Recovery After Stroke https://recoveryafterstroke.com A Community And Podcast For Stroke Survivors And Carers Tue, 04 May 2021 07:59:04 +0000 en-AU hourly 1 https://wordpress.org/?v=5.7.1 A podcast for stroke survivors and carers of stroke patients. This podcast interviews experts in all matters related to recovery from stroke, as well as stroke patients to help you go from where you are to where you would rather be. Recovery After Stroke clean episodic Recovery After Stroke billgas@gmail.com billgas@gmail.com (Recovery After Stroke) Hosted by Bill Gasiamis Recovery After Stroke https://recoveryafterstroke.com/wp-content/uploads/2019/01/Podcast_1400x1400.png https://recoveryafterstroke.com 141. Paige Keely Foundation – Gina Keely https://recoveryafterstroke.com/paige-keely-foundation/ Mon, 03 May 2021 13:59:30 +0000 https://recoveryafterstroke.com/?p=6039 https://recoveryafterstroke.com/paige-keely-foundation/#respond https://recoveryafterstroke.com/paige-keely-foundation/feed/ 0 <p>Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/paige-keely-foundation/">141. Paige Keely Foundation – Gina Keely</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6.

Socials:
https://thepaigekeelyfoundation.com/
https://instagram.com/paigekeelyfoundation/

https://mayoclinic.org/diseases-conditions/hht/symptoms-causes/syc-20351135

01:07 Introduction
03:45 Arteriovenous Malformation
16:29 How Stroke Can Affect Our Way of Living
26:27 Gina Keely’s Advocacy
37:06 Ignoring The Symptoms
46:34 A Voice For The Paige Keely Foundation
56:32 Hereditary Haemorrhagic Telangiectasia
1:01:27 The Emotional Toll
1:10:37 Being Vulnerable

Bill 0:00
How are you guys? How are you going? How’s things?

Gina 0:05
Very difficult. It’s almost like I can’t even explain it. It almost feels in a way like, we just live two separate lives. You know, we sleep in the same bed, we go through the motions, but it feels like we’re going through the motions of life. We’re going through the motions to raise our other two children to the very best of our abilities without screwing them up with our sadness. We try to laugh, it has just, rather than bringing us closer, it’s brought us apart.

Intro 0:54
This is the recovery after stroke podcast, with Bill Gasiamis helping you navigate recovery after stroke.

Introduction

Paige Keeley Foundation
Bill 1:07
Bill from recoveryafterstroke.com This is Episode 141 and my guest today is Gina Keely. Gina is the mom of three children and in 2018 Gina and her family had to deal with suddenly and without warning losing their youngest daughter Paige, due to a ruptured AVM while she was at school.

Bill 1:27
Paige was just six years old. This emotional episode of the recovery after stroke podcast Gina and I discussed the day of her daughter’s death, what the loss has done to her family and how Gina is determined to make something good come from this tragic situation.

Bill 1:44
Gina created the Paige Keely foundation to raise money and awareness about AVM and open an AVM screening clinic where people can go and have a low-cost MRI of the brain to detect AVM and other neurological conditions early and save lives.

Bill 2:04
When you listen to this episode, make sure you have some tissues handy. And when it finishes, please share and like this episode on whichever platform you are listening or watching. Sometimes I forget why I started this podcast. But after this episode, once again, I am reminded it’s to raise awareness of the plight of stroke survivors and their families and to honor those we have lost.

Bill 2:28
If you can support the foundation that Gina Keely has created. In honor of her daughter, Paige, please visit the paigekeelyfoundation.com and make a small donation. All links to the Paige Keely Foundation and the donation pages will be available on the show notes. Thanks for listening. Gina Keely, welcome to the podcast.

Bill 2:55
Thank you. Thank you, Bill. Nice to meet you.

Bill 2:57
Lovely to meet you too. Thank you for being here. The reason I contacted you is because, you are the founder of the Paige Keely Foundation. And it’s something that I assume is not something that you would have preferred to be associated with ever. But you are now. How did you come to be the founder of the Paige Keely Foundation?

Bill 3:29
Well, I never thought that I would ever do something like this. never, I never even thought I just never even knew other than donating to foundations, and what they were all about.

Arteriovenous Malformation


Gina 3:45
So I lost my six-year-old daughter Paige to an unknown brain a VM, which is, as most of us in this area know is arteriovenous malformation of the brain. And I don’t know if you want me to go into what happened with her and how we came to be.

Bill 4:10
We’ll do that in a moment.

Gina 4:14
So, after losing Paige, it’s almost sink or swim. I have two other children and I am married. I have a home. I had a wonderful life. I had the most beautiful, amazing life anybody. It was like, you know, for the most part a dream, a couple fights here and there but I had everything.

Gina 4:36
And I lost it that day. And it was either. I just felt myself sinking into a really bad place. And I knew that I wanted to make a change and a difference because we were told that what took page’s life if we had known sooner, it was treatable and she would have survived and she’d be here today and most likely quite healthy. And coming up on her 10th birthday.

Bill 5:04
So how long ago did you lose your beautiful daughter?

Bill 5:10
We just had the third anniversary, it was January 8 of 2018 that it happened.

Bill 5:19
Yeah. So what was that day? Like? How did it start out? What was going on?

Bill 5:27
The day was great, I had the three kids all my kids were at that time they were six, seven and eight years old. So we always have a little bit of a madhouse, and I was always kind of crazy in the morning, you know, I just kind of like let stuff roll, we would put music on and just dance around.

Gina 5:49
And usually they eat a lot of pancakes just I’m a bad mom, I sugared them up before school then would make a mad run to the bus. And Paige was always my firecracker, my wild third child. And I don’t know what it was, I always just let her beat to her own drum.

Gina 6:02
And I always just would say, Oh my God, you’re so cute. You’re only six once. I don’t care what you wear. And do it. It’s so cute. And sometimes she’d wear makeup to school. And I just thought it was really cute. I was like, go ahead wear makeup, crazy outfits.

Bill 6:31
You would have been a terrible mom for letting a six year old wear makeup.

Bill 6:35
It was so cute, though. So cute. And, you know, we ran to the bus Paige was happy, healthy. Perfect. All three went to the bus. I went out about an hour later, did my food shopping. And I pulled into the driveway. And I got a call from school nurse that said Paige was in the office and she’s really upset, she has a really bad headache.

Gina 7:08
And like I think you should come down. And Paige was not a frequent flyer to the nurse’s office. So it was very out of character. And no sooner did I pull out my driveway. And I made it not even to the end of my block. And they called me back and said we called 911 Paige is unresponsive.

Gina 7:30
And I was like what? What are you talking about? Like, she has a headache. You know? And I was like I’m right here. I was like three minutes from the school. So I got right to the school. And I pulled up the ambulance had already arrived. And I walked in and everybody’s faced was just like, they looked like they died or something.

Gina 8:01
And I walk in and I look at page and I’m like, Paige, you know, and she was out. She was not speaking, she couldn’t even look at me, she was having seizures. You know, I described it as her body was like flailing around and like what’s happening to her? And as a mom, you want to freak out and go completely insane.

Gina 8:34
But I wasn’t thinking like anything. I said, All right, I’m gonna be really calm and cool. And I don’t want her to feel my energy. And they got her in the ambulance. And she just she was, never looked at me never responded to my voice and she was having seizures, the whole way there.

Gina 9:01
I knew something was really wrong because the ambulance drivers, they seemed like very rattled, like, what the F am I going to do it because I was just like, stop making her have seizures like stop this. And the ambulance ride was relatively quick. But by the time we got to the hospital they were on top of her doing compressions.

Gina 9:30
And I didn’t know at that time that she was about to code for the first time. So they got her in a room. Got her somewhat breathing. And it took a long time to get her I guess to stay alive long enough to get a scan to see what was going on. They determined that they thought she was having a stroke or a brain bleed.

Gina 10:00
And she coded several times. She was intubated, obviously. And they got her strong enough to where they said, we’re going to go in and try and operate. And the doctors looked at my husband and I and said, the situation is extremely grave.

Bill 10:24
We really can’t tell you what the outcome is going to be. But either way it may not be very good. And by that time, my husband, I don’t even know how he did it called our family, because we knew something was so wrong, and she didn’t survive surgery. We were put in that room that they put you in, in the hospital, you know, to keep you calm, keep you quiet, keep you with your family.

Gina 10:55
And I remember, like, I was just like flailing around. It was an out of body experience. I felt, like something was happening. And I heard the hospital, like announced like a code. And I saw they had assigned a nun to our room. And I saw her looking at her phone. And I knew, and I remember I said horrible things to her too I was like, screaming at her.

Gina 11:34
And I felt so bad. But she was so wonderful to me. I mean, I called her like everything under the sun. And I couldn’t help it. I didn’t know why. I was just like, leave me alone, you don’t know. And they came in, and they said that Paige didn’t survive. The doctors were crying. They couldn’t control themselves it was horrible.

Gina 12:03
The staff in the hospital, I mean, people were just walking out. Because they couldn’t take it. It was just so awful. And my mom came after that she doesn’t live so close. And it was I still don’t believe it. I really don’t, like I keep myself so busy till I’m just exhausted.

Gina 12:38
Because if I stop to think, then I lose it. And, so after she died the doctors you know, I asked them like, what happened? And he said she had this brain bleed, and she was likely born with it. And this disease, if it’s not detected early, and they rupture, you know, you have usually one of two ways to go.

Gina 13:17
And he had said the way that hers ruptured, and where it was. He said that even if she did survive, she would have been, you know, what they classify as like a vegetable. He said she wouldn’t have been able to breathe on her own, she wouldn’t have been functioning.

Gina 13:37
But you know, at that time, I wouldn’t have cared what she’d look like. And he had said that she was most likely brain dead by the time I got up to the school. He said it was so severe. So yeah, it’s ripped my family to shreds.

Bill 14:01
Yeah, makes sense were the children with you at the hospital?

Bill 14:04
Thank God no. My girlfriend she was with me the entire time. And I often just feel horrible for her. Like, as another mom and she watched the whole thing. And her husband went and I asked her, you know, please pick up Maive and Ronan from school and take them back to your house.

Gina 14:28
And we had them come home. Later that night, they drove them home. And you know, telling them that their sister was gone and they had made cards for her and said get well Paige we love you and their friends did. And the school was making little cards and you know it was it was horrible, horrible.

Gina 15:04
And it’s so horrible for them now, because they were so young. And now you know, they see what’s happened to our family, they see what’s happened to me and my husband, and we’re just really different people. We live very different lives.

Bill 15:28
Very different lives. We’re extremely unconventional, we let anything fly within reason. We don’t really eat dinner at the dinner table, we kind of eat in the den or wherever. And I just, I care less about stupid, stupid shit. I really just, I’m like, just live. I try to avoid myself of any thing that is not worth it. And my focus is my kids, and trying to continue to be a good person.

Bill 16:10
Man.

Gina 16:22
Do you have children?

How Stroke Can Affect Our Way of Living

Paige Keeley Foundation
Bill 16:29
Yeah. Such a tough thing. I mean, I don’t think I would comprehend at all, what you’re going through, if I hadn’t had what you’re daughter had. And I contemplated the possibility that I wouldn’t be around. And then I contemplated the possibility of, you know, what are my kids gonna think of me if I die, and how do I make good on relationships that I’ve stuffed up or been, you know, short, about, or whatever, and amended, had all that time, to mend stuff, and to do all those things.

Bill 17:22
And to constantly strive to put my foot down in what I want to do and how I want to do it, and what I want to leave, and then, and then I’ve got other people in the way or part of that part of my life, who they’re not in the waste, per se, but you know, they’re living their own version of their life, and I’m trying to live my own version, and my own version is a little bit more, like you said, it’s a little bit more different than it used to be.

Bill 17:51
And I have a lot more expectations about not having expectations and bullshit stories, and I haven’t got time for rubbish conversations and any of that, and the people that are going through that, with me, are struggling around me, because I’m not letting them get away with being ridiculous.

Bill 17:51
And it’s causing problems like causes problems for me. And I’m living it from somebody who had the experience of the AVM, the surgery, the bleed all that stuff. And you’re living it from the person who doesn’t have the person around that went through that. And the person that you knew was your daughter, you gave birth to her, you raised her you created her you gave her life, and then something so ridiculous took that from her.

Bill 18:18
And you were never to know. And neither was I and neither are all the people that I’ve interviewed who have AVMs or had AVMs that have burst. And it’s the ones that I’ve interviewed, only the ones that survived, I haven’t interviewed, the ones that haven’t. So it’s such a shit thing. And we went through, it took me about nine years to get back on track, back to my old life and all that kind of stuff and other people take longer, and they struggle further.

Bill 19:26
And that’s the survivors, that’s the AVM survivors. Then what happens to the families and this is what we don’t get. We don’t get the stories from the families who are impacted by this. So it kind of gets glossed over that it’s a life and death thing. It kind of glossed over that AVM is not something that you know, I used to wear it as a badge of honor.

Bill 19:53
And it’s not really something that’s a badge of honor. It’s something that has taken a lot of lives and just suddenly without any idea and I reckon about three years after I started going through all the dramas. I was at a funeral for a guy who was sitting in his chair. He was a friend of one of my wife’s friends. Sorry, he was the husband of one of my wife’s friends.

Bill 20:17
And he was sitting in his chair, and they found him in the chair, the way that he was sitting. They left him there watching TV, while the wife took the kids swimming, and they came back. And he was in the same position when they spoke to him. He didn’t respond, and they said, stop playing games.

Bill 20:45
What are you what are you doing, and he was gone. So I’ve had a little bit of time, only a small amount of time to think about, like what really AVM means. And what it means is for a lot of people very different things for some it’s permanent disability for their entire lives, for some of the invisible disability which messes with you and stops you around like it does with me all the time.

Bill 21:07
And for others, it means losing their loved ones. And that’s such a serious thing. So I’m glad we’re talking about this, because this is the only thing we can do. We can only talk about it. And I don’t think anyone has done what you’ve done. They haven’t gone down the path of problem-solving, I suppose I don’t know what it is. And I don’t know why you do it. I don’t really care why you do it, I’m just glad that you’re doing it.

Bill 21:32
Because this is why I do the podcasts to raise awareness, bring stories together, connect people make them feel like they’re not alone. And also spread the word, the good word of the work that they’re now doing after their experience, because a ton of people are doing amazing work spreading the love, so to speak and making about other people and trying to not make it about them. So does it help you that you’re now making it about other people and saving other people and making it less about you, although it definitely is about you and your family. How does it help you do that?

Bill 22:15
It does. Bill, it’s interesting, because I just actually got asked that question earlier today from someone, you know, how, you know, are you okay to? And I said, Yes, it’s almost like, I feel like this is just what I do now on in a sense. It makes me feel good that I can give comfort to someone. For an example so a girl that I went to high school with we graduated together.

Gina 22:53
And she reached out to me just over a year ago. And she said my daughter just had an AVM rupture. And I was like, what, you know, and she said, Gina, I hate to ask you, you know, but she’s alive. And so basically, her daughter 160 days in the hospital. She clung to life, multiple times. I mean, and hers, it was so bad, they couldn’t even operate for a long time. She was completely immobile, not speaking, just horrific, horrific.

Bill 23:38
And 160 days, she finally made it home. And I communicated with the mom the whole time. And she shared with me pictures. And you know, that was like, people need to see that. And you don’t want to I’m not looking to make a spectacle of people that survived. But for people to see the children that this happens to that are fortunate enough to survive, or in some cases, unfortunate because their quality of life is destroyed.

Gina 24:21
And there are a lot of them that I mean, they can’t speak they can’t breathe. They can’t do anything on their own. My girlfriend’s daughter, thank God. Her speeches is very off her physical limit. She’s very limited to what she can do. But hopefully she’ll be stronger and stronger, and she’s home and she’s alive.

Gina 24:47
I get messages from usually moms a lot all over the world, all over the country. You know, I found your page, I saw your videos and can I talk to about my kid’s AVM? Can you know? And we share the same story? What, what happened to you? What happened to your kid? Where were you? And my biggest question that I asked everybody is, what did the doctors tell you? And they’ll say, and they’re like, What do you mean? I said, we’ll what did the doctors say? How did your child get it? or How did you get it?

Intro 25:24
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I’ll make matters worse?

Intro 25:42
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

Intro 26:08
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. head to the website. Now, recovery after stroke, calm and download the guide. It’s free.

Gina Keely’s Advocacy


Bill 26:27
And they’ve only told us we’re born with it we’re born this way. And I said, Did they say anything else? Like was it curable? And said, yeah, if you detected it early, and I’m like, how, in this day and age, are doctors, and just accepting the fact like, Okay, you know, it’s horrible for them. Sure, you lost another patient. But you know, we have a disease right here in front of our faces, that a simple scan, and awareness can detect and I get these fights suck. It sucks to do this. It’s really grueling, you don’t get paid.

Gina 27:13
But I know it will be so rewarding. Once I get to that level, you know, once somebody really hears what we’re doing, and finally he comes back and was like, you’ve saved my life. I’m alive. Because I forced my doctor to give me an MRI scan, or now that this is approved, and it’s talked about, I went into a screening facility, and I’m here, or maybe they found brain cancer, or maybe they found an aneurysm or there’s just so much stuff.

Gina 27:52
So I’m so so passionate about this, like, you know, I’m like, where the Mothers Against Drunk Driving started, you know, to that one mom, whose kid was killed. And you either lose it, or you go after the person that murdered your kid until your death. And that’s where I look at this, it’s a murderer.

Gina 28:17
It’s just, it’s a serial killer, that we know where it is. But nobody’s tackling it, nobody’s killing it. And I have been so fortunate to start this foundation and learn how to do this on my own, mostly because of COVID. Because I had nothing else going on. And I learned how to do a website, how to set up the bank accounts and the 501C3 and all that.

Gina 28:50
And I went up, getting in touch a local mom here reached out to me who works in a stroke and brain aneurysm center. And she heard that I want early detection. And the doctor that she works with she goes I walked in and I said hey, you know, she goes, this woman lives in my neighborhood and just I think we could do something.

Gina 29:16
And the doctor was like, yeah, we can. He said, let’s talk. And within a couple of days, I was on the phone with him. And I just never thought I’m like really? Is this possible? I said, I know it is but are you really talking to me? You know, like, I’m like a no one. I’m just like a really sad, pissed off mom. And they’re amazing, like, amazing what they do.

Gina 29:45
They take time out of their schedule. They don’t take any money from my foundation. They’ve developed a screening program where they screen people for free. And they because I’m not a doctor. They fight like hell to get MRI scans approved for people. Because as you know, that’s the key to this. A screening will only take you so far. But we got to get the scanning done.

Bill 30:18
Now that you say it, it sounds so obvious because when you’re scanning someone’s brain, there’s so many things that catch people unaware that often get too late that could have been prevented just by knowing. And in Australia, there’s free breast screening for breast cancer for women above a certain age, there’s free prostate checks for men above a certain age, the government sends a parcel in the mail when you are above 50 years of age where you put a sample of your poo, so they can test for bowel cancer.

Bill 31:01
There is ovarian cancer screenings, there’s, you name it, the amount of screenings that we have that are for free, in this country. That it’s all for free. Because we pay for our, in our taxes, we pay for our, you know, our Medicare system, similar to what Obamacare was trying to achieve something like that. We pay for a percentage of our tax dollars go directly to the Medicare budget, and there’s free Medicare for everybody.

Bill 31:37
So for me, my brain surgery, my three years in and out of hospital, all my scans, every single thing was absolutely free and not a single dollar out of my pocket. So it’s impossible to even put to comprehend that because, for me, it’s just normal. But I know that I speak to a lot of people in the US and other countries, and they’re like this cost me $100,000. And now I’ve got to come-up with the money, and I’m half, you know, half stuffed, and I can’t get back to work and all this kind of thing.

Bill 32:07
And I’m like, wow, I get it, I totally get it. So for us, this all just happens. It’s part of the process. And there’s a lot of amazing foundations doing work raising money. In Australia, it’s the Stroke Foundation, their job is to, they have a mandate to prevent stroke, increase quality of life for stroke survivors, and to raise awareness.

Bill 32:33
So they have that job. They are funded by partly the government, and then partly by other supporters of the nonprofit. So people from corporations, or perhaps they are, you know, other people that have been affected by stroke, they do regular drives to raise money through the community.

Bill 32:57
So that stuff is happening. But no one has thought ever, I’m pretty sure to add screening of the brain to this list of free stuff that’s getting done. Because if we did, we would save a ton of money, lost productivity, and save lives. That’s exactly what we will do. And this is what you’re trying to do, you’re going this is going to reduce harm, it’s going to decrease trauma, it’s going to save lives, it’s going to put you in a position of power and in a position of control of your ailment or your issue in your head. You’re gonna know more about it it’s not going to catch you off guard. It’s not going to tear families apart.

Bill 33:44
Yeah. And in this day and age, it’s we do so it’s preventative medicine, that’s what everybody supposedly strives for. Why are we opening all these tools up, the faster that we find all of these diseases that are just killing people? Like, it’s right there in the back, you know, it’s in your back pocket it’s right there.

Gina 34:12
And it just doesn’t get approved here in the United States. And it’s, you have I mean, you literally have to you have to go to either a great doctor that’s willing to help you. Okay. And that will has the staff that’s able to sit there and fight with insurance companies for hours on end.

Gina 34:34
Or you have you know, doctors that they’re so busy and inundated they don’t have time for this. Their staff does not have time to sit there with your insurance company to fight for a scan. They didn’t want to approve my other two children to get scanned. Like why they don’t have that there’s nothing wrong with them like you don’t know that I just lost a child and you’re telling me no because You don’t know what’s wrong, with my kid, you have to find something wrong. And then it’s too late. In most, you know, whatever.

Bill 35:08
Yeah, it’s too late because if it bleeds, then it’s lifelong after that it’s too late. Even if the person survives, it’s too late because you already been through all this shit you already ended up in hospital, you already traumatized everybody. It costs so much time, money and effort and productivity and everything out the window, you got to crawl for the rest of your life to get that back.

Bill 35:29
You you got to go kicking and screaming to just get back some productivity and the rest of it, it’s already too late, even if they survive. So, you know, I went to hospital 18 months before the first bleed with a crazy, weird, wild, ridiculous headache. And they did a CT scan. They didn’t do an MRI. And the CT scan didn’t reveal the AVM.

Gina 35:57
I hear that so often?

Bill 36:01
So what I didn’t know is that in Australia, an MRI cost about $560 or $600, depending on where you go. What I didn’t know is that you could pay for that I could just pay for that privately. If I can afford it. I can say, go to my GP, a general practitioner asked for a referral, go to a radiography clinic and say, here’s my money pay for me to do this scan.

Bill 36:27
I could do that. So I would have paid anything to know what I found out 18 months later, when my entire left side went numb, and I ended up in hospital. And then at about midnight, the doctor said to me, oh, by the way, we found there’s a shadow on your brain. We don’t know what it is. And then it took them. And then six weeks later, it happened again after they told me to go home. Because they couldn’t see beyond the shadow, which was a blood.

Bill 37:00
And they didn’t say like they knew that there was blood that they were calling a shadow.

Ignoring The Symptoms

Bill 37:06
Yeah, they knew it was blood they knew was a shadow. They didn’t know what was causing it. They thought they said to me, it could be a tumor cancerous, it could be a faulty blood vessel, it could be all these things we don’t know. And right now the risk of going in there is pretty high that we’re going to cause additional damage because we don’t know what we’re dealing with.

Bill 37:24
Go home and we’ll see you in in six weeks. Because for me, the numbness spread from my big toe to the entire left side over seven days. So the bleed was happening very small amounts like it was a microbleed. So that was what kind of lead them into this false sense of security.

Bill 37:50
And then what happened was about six weeks later, I started to get dizziness. And I started to feel nausea and felt like vomiting and, the room was spinning and everything. And I got to the hospital and my wife dropped me off into emergency and she was going to go park the car.

Bill 38:12
And then in that time where I walked on my own 50 meters, I got to emergency and I don’t remember anything after that, I didn’t know my name, who I was what I was doing. None of that stuff. I just remember waking up my wife was at the end of the bed. I didn’t recognize her I didn’t know who she was and I spent another three days in hospital.

Bill 38:33
And now the bleed had gone from being this small shadow probably the size of a dime, to a golf ball size, like it was huge. And then that stayed in my brain almost for three years by the time it slowly, slowly, slowly decreased in size. By about the two and a half year mark.

Bill 38:58
I was being monitored the whole time, it bled again. And this time I was in the city driving around and I felt a burning sensation on my left side. And I drove myself to hospital, I made all the wrong decisions. But I did them and somehow it got me there. I drove myself to hospital got there. And when I got there, I went into the emergency I said to them I’m having a bleed in the brain right now.

Bill 39:23
And it’s tough to do something about it. And they were doing the poor doctors and nurses they were just doing the whole alright, no worries. Tell us about yourself. You know, this crazy guy telling us he’s having a bleed in the brain. And I’m like, just give me a scan straight away right now. Anyhow, I eventually got them to I’ve convinced them to get me into the MRI.

Bill 39:59
They went through the process of course, they brought up my details, they found my history. And then the room was full of radiographers, and they were all wanting to see who’s this crazy guy that came and is telling us he’s bleeding in the brain. So anyway, then they found that and then we had surgery about a week and a half, two weeks later, my surgeon finally said, look, we’re going in, we have to go in, we’ve got to remove this thing, it’s dangerous, you know that it’s dangerous.

Bill 40:27
Your risk of becoming sick and dying from this and unwell while you’re driving or working, or whatever is really high now it’s higher than what it was before. So are we doing this? You know, are you up for it? And I said, Yeah, I’m up for it. Let’s do it. I trust you, I believe in you.

Bill 40:46
By now I had done enough, I had enough time to prepare my body, prepare my head counseling, coaching, meditation, food, the whole lot, like I had done so much so that I could be really ready for this surgery should it need to happen. Last thing I did was when I went into surgery, I told the doctors Look, you’ve got the best patient you ever gonna have. I’ve prepared myself for this, like you get the best body, the best thing, everything’s gonna get perfect for you guys, because of all the work that I’ve done in three years to get here.

Bill 41:26
They were like, who is this crazy person, let’s open his head and shut him up, you know. So when I woke up, I wasn’t able to use my left side, and I had to go to rehab, learn how to walk again, use my arm, again, all this type of thing. But that’s just an example of this is all these are all the things that I had time to do, because even though it bled, I now knew what I had.

Bill 41:52
I now knew what was in my head, and I could plan and I could strategize, and I could put things in place. And in that time, I mended relationships. I told people, I loved them, I hugged them. I apologized. I did so much. And this is what you’re giving to people. This is what happens when you do this and find something wrong and someone’s brain years before it does anything to them. Gives them time to do stuff. And I’m so grateful that I had that time because most of the people that I’ve interviewed that had an AVM had no time.

Bill 42:37
Yeah, no, I can’t believe that. You were walking around like that, for that long. I mean, that’s like, that’s wild. That they didn’t want to operate or try any radiation or something. I mean, that’s like.

Bill 42:58
Yeah, it’s crazy. And the thing about it is that makes the people around me feel like it’s not as serious as it is.

Gina 43:07
Yeah, cuz you’re walking, you’re talking, you’re like oh. Right they don’t.

Bill 43:13
How could they, and I get it. It’s no problem. But that’s what happens. It allows you into this false sense of security. But then when it bursts, the third time, I was like, Man, this is serious shit. Like, can’t stop this happening. It’s just happening. We’ve got to get rid of it. And whatever I wake up with after surgery, I would rather wake up with that, than this thing, just going one day, and that’s it all over. And I’m not around, and I can’t speak to people that I love and all that kind of thing.

Bill 43:46
So when I came across your page, it took me a while to get in touch with you. It was so difficult to know how to respond to your posts how to even put a comment on it because I wanted to put a comment on it. And then I thought I have to find a way to overcome all of my stuff to get you on here because what you’re doing is so important. And I want to make sure that as many people as possible, hear about this and learn about this. And I feel like that I feel like we have an opportunity to grow this thing beyond your state, your place where you live and take it global.

Gina 44:26
Oh, we have to I have to.

Bill 44:28
I don’t know how but I think this has to be an it can be one of those things. You know, we hear about Red Nose Day. You know, we hear about stroke week we hear about stroke month, we hear about wear red for stroke. We hear about all of these causes that are amazing and they’re raising awareness for this specific little challenge that they’ve got in life.

Bill 44:53
You know, and I think we need to take it to the next level and do something about this because I’ve been passionate Since 2015, when I started this podcast, not really knowing what the hell I was doing it for what the purpose of it was, and I think I just realized what the purpose was.

Bill 45:09
Yeah, it takes time. And it takes an army and, patience and determination. I remember when I started this, you know, I’m still learning how to use Instagram, I still screw it up constantly, I lose messages. I’m all over the place. But I had somebody reach out to me from one of the biggest organizations, and this was before. I don’t have a lot of people like following me now. But I am getting well known, you know, I have been in the press.

Gina 45:48
And they were like, so you really think that you’re going to be able to do this? I’m like, of course. And they said, Well, what are you gonna do it the money that you raise, and I said, I’m not gonna do anything. It’s going to sit and I have complete control, until my vision and my dream of opening a screening center or, you know, a facility, perhaps buying a machine.

Gina 46:12
Once that’s done, that’s where my money goes. And I said, If I fail, I’ll call you. And I’ll give you a donation. Otherwise, this is what I’m going to do. And it’s great, because I don’t have anybody telling me, you know, I never heard from that person again. They never called me.

A Voice For The Paige Keely Foundation

Gina 46:34
And they a were very big organization. And I was like, a deer in headlights. I’m like, Oh, my God, they’re on the phone with me. And they respectfully, so they wanted me to partner with them. Because this is a really uphill battle. It’s very hard. And if you don’t have big money behind you supporters and big voice that’s why I keep trying to find a celebrity voice. You know, just keep getting out there because people listen to them.

Bill 47:11
Some of them shouldn’t even speak, but yeah, they do.

Bill 47:15
But everyone listens to them. But I did find a celebrity there is. There’s a country singer, Great White. I’m not a country fan. But I love music. So his music is pretty cool. Seems like a super cool chill dude. And he did have an AVM rupture. And he spoke very openly about it. And he probably thinks I’m some psychopath insane person, I’m gonna get arrested one day. He’s like, she’s cyber stalking me or something.

Gina 47:49
But I messaged him.

Bill 47:51
Did you get him on a phonecall?

Gina 47:53
No, I’m like, could you call me please? I promise I’m a normal person. I said, I just need help. I need a voice. And I hope he probably well, he must not think I’m that much of a psycho because he hasn’t unfollowed me. But that’s how stuff happens. Like, you know, we get all these big people behind these foundations.

Gina 48:17
And, you know, or a celebrity to sing a song about something or someone. And then it raises attention and people like, Oh, I know someone who had that I know someone who had that. And it just, but I don’t have that. We don’t have that yet, we will.

Bill 48:35
Well, we can get this interview to Drake, and he can see what we’re all about. Right? He can see what the hell is going on. And you can understand how he is not alone. Like we are also part of his tribe. We’ve been through what he’s been through, and maybe he hasn’t expressed that yet. But I’m sure he’s got some of the feelings that we’ve felt. And maybe, it’ll touch his heart. And that’s it all we want. And if it doesn’t, it’s okay as well.

Bill 49:06
Yeah it’s cool it’s for everyone, but like him, like, you know, he’s a young guy. You know, he’s, young. I’m probably the oldest one here. But like, you know, he had like the stroke effects on one side and he said he had to learn how to play guitar again, and, you know, all these things.

Gina 49:28
But I think also, a huge thing is, you know, I would like my girlfriend’s daughter to be an advocate for us and be like one of my or our top spokes people because, you know, I have a video clip I recently posted of her and she’s just such an amazing girl, what she went through and just so so young, and she just, she kicks ass, and she’s awesome.

Gina 49:59
Sadly, I know a couple of kids that are survivors. Jenna did go through the worst, the worst of it. But all the ones that went through it, had grueling surgery had to have after surgeries. They’ve had to learn how to rewalk learn how to walk again. I know one little boy who can’t speak. He learned how to walk again. And he can type in text. But when he goes to speak, it doesn’t come out.

Gina 50:33
Can you imagine, like, be a child, and you go from this normal, happy, bouncy, crazy kid. And then you wake up, and you can’t move. But you’re typing and you’re texting. And then you go to say words, and you hear what’s coming out like? And, that’s, I think, going to go, you know, be with them like that for a very, very long time. The brain heals, but it’s, it’s horrible.

Bill 51:01
Yeah. How many people have had a free screening so far?

Bill 51:07
So far, I think we’re at 60. So we’ve had 60. With the screenings, we’ve had two or three go for the MRI, a scan. So the numbers are kind of low. But I’ve only been part of the screening program, say, eight months. Seven months, and this was during COVID. So I don’t think it’s that bad during COVID. You know, and just getting it out on social media. That was it.

Bill 51:44
Did anyone find anything that they needed to address?

Bill 51:50
Nothing yet. Thank God, you know, they’re not the doctors cannot, you know, they can’t divulge anything, but most of the people that go for the screening will like reach back to me, a lot of them have a family history of this or aneurisms. I’ve had a couple of friends that have history of aneurism, which is so much more common.

Gina 52:19
But it’s only a matter of time. And once people get past, like, the, I guess, the fear of it, you know, they’re like, what are you more afraid of? Are you more afraid of being a parent in my shoes, or I’m giving you something that could prevent that. It’s not like, you know, you send your kid out on a bike.

Gina 52:40
And, God, my biggest fear is them getting hit by a car. You know, we put helmets on them, but here we have something that, you know, if we find it soon enough, you know, your child can hopefully live a beautiful long life.

Bill 53:00
Yeah. I had that conversation about prevention, for lots of things with people in my family, and so many of them would rather not know. I don’t know, I don’t get it.

Gina 53:12
I’ve had so many people say that. Like what do you mean you don’t want to know? Like, do you not go to the dentist, and they automatically give you an X ray and check for cavities? Do you not want your teeth in your mouth? You know, we have the breast cancer screening you don’t wanna go through cancer?

Gina 53:32
You know, if I have it, take it out, take them. And then it’s like, what I I don’t understand that, which, you know, and we do so many things like for our kids, you know, this all these things when they’re like first born, you know, all these tests and all these vaccines, like, we don’t even think about it. It’s like kid has to have this kid has to have this. If it becomes part of the new norm, why not?

Gina 54:01
And it doesn’t even have to be just AVMs. Like, I think it would be good for younger children to have an upper scan. Because I mean, look how many kids have the pediatric brain cancer. I know two moms that lost their children two, and then other kids that have it. And that is that’s just become like rampid and what are they all told? If we found it a little sooner, we probably could have treated it more effectively or more aggressively. It’s like, in this day and age, we shouldn’t have to hear that.

Bill 54:38
That’s interesting. That connection doesn’t happen. If we found that a little sooner… Well, why didn’t you find that a little sooner? What is preventing you from finding it a little sooner. Scans. Oh, there you go. So yeah, it’s such a strange and bizarre thing. And even me like Now that you say it’s so bizarre that that’s all we have to do is just scan people earlier. That’s it.

Bill 55:06
Yeah. And people like, Oh, I heard that you have to have dye injected into you. And you have to, like, if the doctor thinks that you do other than that, no.

Bill 55:19
You don’t even feel it anyway. Like, it doesn’t really even feel like anything.

Bill 55:23
Yeah, I’ve had it done. I had, you know, but for my own just MRA scan to check to see if I had an AVM you know, being that, you know, even though I lost a child to that, I don’t have any signs or symptoms that they say. So mine was just a straight up, scan. I think mine was like seven or 10 minutes long. And I’m like, oh okay, I’m good.

Bill 55:50
That’s it. What’s interesting is that my cousin who lives in Greece, she’s about the same age as me, somewhere mid 40s. Somewhere the late 40s. She had seizures. And what they found for her around the same time that it happened to me about 10 years ago, it’s almost 10 years for me is that she has an AVM in her head as well. She’s on my dad’s side.

Gina 56:19
Oh my god.

Bill 56:21
Yeah.

Bill 56:22
So this leads me to have you ever had the test for HHT?

Bill 56:29
No I don’t know what that is.

Hereditary Haemorrhagic Telangiectasia

Bill 56:32
Really? We have to do this. Oh my god. So I’m not even to try and say it. Some days. I can pronounce the whole thing, but I’m not going to try it. HHT. It’s like Hereditary Haemorrhagic Telangiectasia.

Gina 56:49
So it’s a rare bleeding disorder. It’s the only genetic type of a link to showing a family history of AVMs. Only disease so few people know that it, the neurosurgeon that did Paige’s surgery, you know, they didn’t even tell me about it, nobody, because it’s so uncommon.

Gina 57:20
How I found out when Paige died, a reader read her obituary, and sent me an anonymous letter telling me about this disease, and said it could have a link to Paige’s AVM. So I looked into it, and I was like, holy crap. So I started talking to people all over the world about it.

Gina 57:44
And almost every person I talked to with this disease, I asked them, anybody ever mentioned HHT, I would say the percentage is so low. And then the ones that did they were like, oh, immediately, we got tested and it turns out that my grandfather has it. So like, you and your husband, have a kid. And somebody on your side, you know, both sides, one can carry this gene, but it can skip generations.

Gina 58:18
But if you have this gene in your genetic makeup, someone in your family will develop an AVM. But knowing that you carry this gene, you would then know. Okay, you have to have your children, their children so forth scanned. So if you have this disease, this genetic carrier, the doctors that find it will tell you, there is a chance that you could have a child that has developed an AVM or they are children or their children or their children.

Gina 58:54
So that’s another huge battle to this disease that I’m trying to fight but because it’s a genetic piece, that’s crazy, because tests for that is a swab in your mouth. That’s it. So if you think of every parent that is either trying to conceive a child and going to the doctor’s for all this stuff, and you do all these tests, I mean, they have a test where you can actually remove the gene for autism.

Gina 59:26
Prior to having a child I have a friend that did it. Yes, you can choose to you have your child made in that little thing or whatever. And they like take out that genetic piece. And the baby grows and they’re born without that gene frickin insane.

Bill 59:51
Wow. So tell me about this. How do you say it again hereditary?

Gina 59:55
Hereditary Haemorrhagic Telangiectasia HHT. So now you’re going to start reading about this and you’re going to be like, Oh, my God. So HHT and the doctor that I do work with.

Bill 1:00:16
Google Do you think because I know what I’ve spelt there it didn’t find anything.

Gina 1:00:25
Yes.

Bill 1:00:28
Oh my god, here we go. Bang hereditary hemorrhagic telangiectasia. Why don’t they just name it something simple. All right. So, guys, whoever’s listening, watching wants to know more about that, I will have links to some of this stuff on the show notes of the podcast, so that you guys can just look at it, and we can talk about it. I’m gonna get obsessed with it now. And I’m gonna start looking at it.

Bill 1:01:12
You’ll be like, Oh, my God. Oh, my God. I’m still obsessed with it. But it takes away from my other time because I have to pick battles to fight right now. But this is wild. This HHT thing.

The Emotional Toll

Bill 1:01:27
Okay, cool. I’m gonna look at it. So thank you for that. Now. Can we go back a little bit about I just want to touch base with family and see how you guys are all doing and how your husband is doing and how you guys are doing together? That would have been a really difficult thing. Nothing ever, you never get married expecting any of that stuff or planning for any of that stuff. How are you guys? How are you going? How’s things?

Gina 1:01:57
Very difficult. It’s almost like I can’t even explain it, it almost feels in a way. Like, we just live two separate lives, you know, we sleep in the same bed, we go through the motions. but it feels like we’re going through the motions of life, we’re going through the motions to raise our other two children to the very best of our abilities, without screwing them up with our sadness.

Gina 1:02:34
We try to laugh. And it’s not easy. It’s not we don’t blame each other for anything, because there’s nothing that we could have done. But it’s just, there’s such a sadness in our house. And it has just, rather than bringing us closer, it’s brought us apart. But we still come together, you know, when we have to but it’s been very, very difficult on us.

Gina 1:03:17
I think we’re just so broken. We’re so so broken. And we just focus so hard on not screwing our other two kids up. And he just throws himself into work. He worked so so hard. And if he’s not working, he’s very involved with my son’s baseball. And then that’s it. And he works out. And that’s his thing.

Bill 1:03:52
Coping mechanisms.

Bill 1:03:54
Yeah, he so we respect that about each other. You know, you do find yourself you drink more. You find vices. I would love to sit there and like just drink all the time or now I understand how and why. People do these drugs to numb their mind. I don’t do drugs or anything like that. I’m not an alcoholic. But I get it. I would love and my husband says the same thing. You would love nothing more than to be numb and not think.

Bill 1:04:34
And not feel.

Gina 1:04:36
Yeah, I just don’t want to.

Gina 1:04:39
So we don’t really talk about page that much together. It’s too hard for me. We do with the kids and my husband is very open with You know, he’s not afraid to cry. And he cries with them and me, I think I am just so on the defense, and I just, I’m such like a protector, you know, I just never, never let my guard down. I just never want to I can’t stand for my kids to see me upset.

Bill 1:05:27
Have you guys done the counseling being down that route managed to speak about?

Bill 1:05:32
I tried it. And I can’t say I failed because I never did it for more than two visits. I think he’s, doing some individually and counseling on his own. And I did try again to do some counseling on my own. But it just pissed me off because it made me upset. And I was like, I feel shittier than when I walked in. So I know, I don’t want to go anymore.

Bill 1:06:01
But you jumped on a podcast with me, and we’ve been speaking for an hour solid.

Gina 1:06:06
I know. But that felt good. But I can’t sit in a room and like. I don’t know.

Bill 1:06:14
Yeah, I love it. Okay, but I just wanted to throw that out there. Because the way you just said was weird. And I understand you because I completely understand you. And I’m not gonna judge you or any of that stuff. And you guys have your journey. That whole because part of what I do is I coach people, I coach people to overcome the challenges that stroke causes.

Bill 1:06:36
And most people think that what they’re being coached for, and overcoming is what the stroke did. And it’s a load of bullshit, what they’re overcoming is what they were before the stroke, difficult, you know, in connecting with people, arguing with people, stopping themselves from achieving their best off fears, anxieties, all this rubbish that we do in our lives.

Bill 1:06:59
And what happens is, stroke happens and then it gets amplified, all those things get amplified. But the problem is, it is now I’ve got an excuse I had a stroke. So I’ve got an excuse for all the reasons why I’m anxious, upset, emotional, why I won’t go there, why I won’t do this.

Bill 1:07:20
And what happens inevitably, with the guys that come on for a couple of sessions, and then don’t want to feel the feelings is those feelings will remain and they persist. And one of my amazing coaches and she probably got it from some amazing guru around the world, I don’t know where she said to me what you resist persists.

Bill 1:07:41
And it’s with you a longer and causes more trauma for a longer period of time down the track. And what she was encouraging me to do was go there, go where the pain was, and talk about the pain because once you’ve done that, and you’ve opened the door, and it releases, yeah, it’s a shitstorm at that time, but then later, once a shitstorm is gone, you can’t go back to that same painful place again, you kind of have dealt with that little bit of it, and it’s gone.

Bill 1:08:11
And one of the things that frustrates me dramatically, is, when I’ve been to counseling on my own, that frustrates the hell out of me, I would rather be in that room with the person that I love that I’m married to that I’ve had children with that says to me, that says to me, all the things that I can say all the things that I want to say from no judgment or anything just I’m being a human, I’m just interacting, I’m just talking.

Bill 1:08:39
And then what the miracle that happens is that perhaps in my mind, the miracle that happens is she goes somewhere where she has resisted to go from 50 years, and it releases something and then we can move on, we can let that one go. And then we can move on. And once you get good at going there where it’s hard and releasing it, you get better and better at it.

Bill 1:09:01
And it feels better and better. And the other side is much nicer. And the trauma that you experienced stays in the past, and you’re not reliving it in the future. All you’re doing is remembering it for what it was. you’re addressing it for what it was. And then you’re moving on with it. It doesn’t change the way that you love your daughter. It doesn’t change the way that you interact with your children now, it doesn’t change anything about anything.

Bill 1:09:26
It just takes it out of that place where you’ve locked it away. That it reminds you from time to time that it’s still there and it just releases it and it just sets it free and along it along with that it sets you free. So this is the beautiful thing about podcasts is I get to interfere in people’s lives in this beautiful way by ringing them or sending them a message or a podcast interview or request or whatever and going come on my podcast complete strangers like you come on my Podcast, they bear this soul.

Bill 1:10:05
And I cannot understand how then that complete stranger who bares their soul some of them have said to me, I’m the first person in 10 years that they have spoken to about their stroke. And then that person won’t go to counseling. And it’s like, Guys, this is what we’re doing. This is a counseling session, you just haven’t worked it out sucked you in. And what we’re doing is at the same time, we’re creating the counseling session goes out there to all the 4000 people a month, who download this podcast.

Being Vulnerable


Bill 1:10:37
Yeah, I almost feel vulnerable. In a sense when I have done counseling, I feel like because then I walk back in. I’m like, they know my weakness. They saw me weak. And then it bothers me, and then I get uncomfortable, or I get uncomfortable. That I cried. I think that’s a big problem for me, too. I don’t know why I’m very uncomfortable crying in front of people.

Bill 1:11:12
Remember all those rules that you just relaxed after you lost your daughter?

Gina 1:11:17
Yeah.

Bill 1:11:18
This is one of them. Just let it go.

Gina 1:11:21
And I say it all the time. I’m the biggest one. Let it go. Let it go. But I would explode. That’s probably why I have so many stomach problems. Because I’m exploding inside.

Bill 1:11:34
Yeah. I get it.

Gina 1:11:36
I kill myself.

Bill 1:11:37
Yeah, I’m so glad I’m so privileged to have you. Let me tell you these things. And you’re understanding where I’m coming from, I am so grateful that you let me do that. And that that’s kind of a little gift that I give you some people don’t take it as a gift. Some people get really shitty, that I give them my opinion and my thoughts.

Bill 1:11:58
And I love you for listening and copping it on the chin and not hating me forever about it. But some people need to just hear it. And that’s I’m grateful that you let me and I’m going to leave it there. And I’m going to let you go down your own path. I don’t begin to know the first thing about anything. I don’t believe that I know the first thing about anything, especially in this situation, I’ve got no idea.

Bill 1:12:22
I don’t want to ever know what you feel and what you really are going through because no parent does. No human does. And it’s unfortunate that there’s some people that do and you guys are my heroes. That’s why I reached out because I needed to make sure that I did my bit and make something good out of the shit that I’ve been through to help you make something good out of the shit that you’re been through.

Bill 1:12:47
And together, maybe we can make a difference. And maybe we can change things. Or maybe we can fix things and overcome things. And I know we’re not going to fix everything and change everything and solve all the problems. But if we just make one person’s life a little bit different, it’ll all have been worth it.

Gina 1:13:03
Yeah, that’s what it’s all about. Just start with one. Just one.

Bill 1:13:08
Yep. And then we’ll take any others as a bonus after that.

Gina 1:13:13
Yes. Yes. Complete.

Bill 1:13:16
So how are you raising money? What are other things that you do to raise money? How can people support your cause?

Bill 1:13:25
Well, we we have our website, which is thepaigekeelyfoundation.com We have a donation link right on there. And during COVID we were very restricted to what you know, any outside fundraising events, etc. But we were able to do a couple and I live in a wonderful community that still treats it like it was yesterday.

Gina 1:13:56
The businesses, the customers 1000s of dollars are donated constantly just by we have bracelets that we do for the foundation that local shops carry. We have these like signature stickers that go in storefront windows, and then that just turns into a fundraiser that they’ll do and we have a baseball tournament that I’m so excited we finally got to do and we’ve got some incredible sponsors, companies that donated hundreds of dollars worth of products that get raffled and that goes right to the foundation.

Gina 1:14:44
We recently were awarded our first grant, which is going to be between $1000 to $2,000 and this was all done social media. It was a Facebook group 100 women who care and The girlfriends that work with me is that you got to join this group. And it’s great. It’s men and women that get together that run foundations. And every quarter, we donate 100 bucks.

Gina 1:15:09
And then we nominate a foundation. And it’s just it’s a win win. I’ve done online fundraisers on Facebook, where I’ll raffle something off, you know, like something really cool. And you get like, hundreds of dollars. Just from the other things that we do. I have car dealerships that help. It’s really through the sponsorships.

Gina 1:15:36
And I gotta tell you, the community, the town that I live in, it’s, I still don’t believe, I don’t know where the people come from. But they just treat it like it happened yesterday. And they’re like, yeah, we’ll do a fundraiser. Of course we will. And it just trickles to where we’re under a year. No, no, what am I saying? We just had our year anniversary. And we are just under 50,000 that we’ve raised.

Bill 1:16:09
Wow.

Bill 1:16:10
And I haven’t had like anything big yet.

Bill 1:16:15
So great.

Gina 1:16:16
I think that’s huge. That’s a lot of money like a lot.

Bill 1:16:21
That’s a lot of money.

Bill 1:16:25
And it’s just, I’m collecting and collecting. Because I’m dreaming of opening that center. And if I am able to save up, or get enough money and funding for our machine, I just need one. The doctor that I work with, it will open the door to you come in for a screening, Hey, would you like to scan because I own the machine and nobody can tell me no.

Gina 1:16:52
That’s what it’s gonna do. And nobody can tell us no. And I would like to open it to the community where maybe we could do, you know, 50, free scans a month, maybe we’ll do 100, maybe we’ll offer it to this school, everybody in this school who took part in our program, your family comes in on such and such a day. And just doing that. That’s it, that’s where it’s going.

Bill 1:17:22
How much does the machine cost me.

Bill 1:17:25
I heard that they can go anywhere from like 100 to 500,000. to millions. There are companies that donate them. I just haven’t gotten that far to like, do the research, you can get like grants, but there are like medical supply companies that actually give them to foundations, as long as you have the place to house the machine, which we do.

Gina 1:17:56
It’s just because of COVID, I haven’t been able to do that. But now the COVID is kind of lifting a bit here in the States. We have a gala that we’re planning in October, you know one of those like big Fufu, which I’m very nervous about. But we’re expecting to invite a lot of people that can help us and it’s really going to get the word out. And hopefully open a lot of doors for us, the doctor will be there. We’re expecting some some really great things.

Bill 1:18:36
So brilliant. That is such an amazing thing. 50 grand in a year. So at this rate with no effort of increasing it or doing anything in 10 years, you’ll have raised half a million dollars. That will be amazing. But of course it sounds like it’s going to go way beyond that, and that’s great.

Bill 1:18:55
So all you need is a room, you’ve got the room and now all you need is a machine and then you can just get people in and you can get doctors to volunteer and donate their time. And radiographers, etc, they’ll be definitely people that will be up to doing that. And you could screen as many people as you want, whenever you want, and it can cost nothing and that’s all you need. And then the people that could offer a little donation, they believe 10 bucks or 20 bucks and they can help.

Gina 1:19:25
Yeah. And even you know, if we have to, we have to increase like, staff I’m just saying you know, hypothetically staffing or something like that, you know, all right, we have a Mrs. For 50 bucks for 100 bucks for 200 something like that, you know, but it just opens the door to so so many things and it’s possible.

Bill 1:19:50
Anything’s possible that people

Gina 1:19:51
Can’t go back in time yet.

Bill 1:19:53
Yeah.

Gina 1:19:54
That I know of. But this is possible.

Bill 1:19:59
I wish you could That would be a really good reason to go back in time.

Bill 1:20:05
Wow, man, this is such a heavy podcast. I didn’t want it to be heavy. But I knew it would be so I just accepted the fact. Look, I’m really grateful that you are on the podcast I really appreciate it. I wish we never met. And this never happened. And I wish you well, and I wish your family well, your children and your husband, and I wish you guys healing and growth and all the things that you guys need to move on and expand.

Bill 1:20:51
And remember Paige, who was perfect in every way like your other children. I wish them well. So what I’m gonna do is I’m going to get off this podcast in a little while in a second, I’m going to go to the donate page and then donate 100 bucks. And anyone listening hopefully it converts Aussie to US, I want to donate 100 US dollars.

Bill 1:21:20
So hopefully people listening can go and donate some money 10 bucks a buck, five bucks, 50 cents, whatever they want doesn’t matter. Just please, that is the call to action for this podcast episode is listen, learn, and then go ahead and donate and support this amazing cause.

Bill 1:21:40
And I feel like what you and I need to do is we need to combine because I really want to be behind raising awareness for you on Instagram. So if maybe we can get together and do a maybe every two months, catch up or every two months, Instagram, Instagram, video or do like we’re raising money or awareness for this thing. You know, maybe we can, every couple of months do something so that we can continue some momentum and bring followers to your page.

Bill 1:22:20
So the website is thepaigekeelyfoundation.com. And the Instagram is also paigekeelyfoundation. And I’ve got 4000 followers and I’m no one special. So what we want to do is we want to increase your 1158 followers right now 200,000 followers worldwide. So go ahead and follow the page, paigekeelyfoundation. Go ahead and make a small donation. And reach out and send Gina a message and let her know that you’re there. How’s that sound?

Gina 1:23:17
It sounds amazing. And it was such a pleasure to speak to you. Again, I’m sorry that we did meet. But we met and here we are across the world. And we found each other. So we’re not such needles in the haystack. And joining forces to make change. No matter where you are. You don’t have to be in you know around the block.

Bill 1:23:51
No, you can be on the other side right at the bottom of the planet. And that’s where I am.

Bill 1:23:56
We’re all people breathing the same air just at a different time.

Bill 1:24:01
Thank you very much for being my guest. I really appreciate it.

Gina 1:24:03
Thank you and bless you and your family and have a wonderful, wonderful day.

Bill 1:24:14
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Bill 1:24:41
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

Bill 1:24:58
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Bill 1:25:19
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Bill 1:25:43
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The post 141. Paige Keely Foundation – Gina Keely appeared first on Recovery After Stroke.

]]>
Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6. Gina Keely is a mother of 3 children, her youngest daughter Paige passed away in 2018 due to a ruptured AVM aged 6. Recovery After Stroke 1:26:10
140. Brain Stem Tumor & Stroke Recovery https://recoveryafterstroke.com/brain-stem-tumor-stroke-recovery/ Mon, 19 Apr 2021 13:38:07 +0000 https://recoveryafterstroke.com/?p=6023 https://recoveryafterstroke.com/brain-stem-tumor-stroke-recovery/#respond https://recoveryafterstroke.com/brain-stem-tumor-stroke-recovery/feed/ 0 <p>Neale Mahon experienced an ischemic stroke nearly 30 years after radiation treatment to deal with a brain stem tumor.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/brain-stem-tumor-stroke-recovery/">140. Brain Stem Tumor & Stroke Recovery</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Neale Mahon experienced an ischemic stroke nearly 30 years after radiation treatment to deal with a brain stem tumor.

Socials:
https://facebook.com/neale.mahon
Strokefitinc.com

Highlights:
00:45 Introduction
02:15 What happened to Neale Mahon
11:27 They can make mistakes too
13:43 Brain Stem Tumor & Stroke Recovery
24:13 Mortality
31:36 Covid vaccine having a risk of blood clots
40:46 Stroke recovery timeline
52:03 Being afraid is something to be afraid of
57:20 The biggest disconnect
1:03:56 Future plans for Neale Mahon

Transcription:

Neale 0:01
Yeah, you know, I think fear can be a very powerful thing. You know, being afraid is something to be afraid of.

Bill 0:18
Oh, man, hang on a sec say that again.

Neale 0:23
Being afraid is something to be afraid of.

Bill 0:27
That’s deep man that is real deep.

Intro 0:33
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

Brain Stem Tumour & Stroke Recovery
Bill 0:45
Bill from recoveryafterstroke.com This is Episode 140. And my guest today is Neale Mahon. Neale is no stranger to health challenges born with a cleft lip and palate, dealing with a brainstem tumor as a young child, and an ischemic stroke in his 30s has given this middle child some lessons in resilience.

Bill 1:07
Now, just before we get started, if you enjoy the recovery after stroke podcast, and you think that others should hear the amazing stories of these excellent stroke survivors, please tell others about the podcast and share it on your favorite social media app.

Bill 1:23
Also, leave the recovery after stroke podcast, a five star review on iTunes, or your favorite podcast app. And if you’re watching on YouTube, click the thumbs up button and subscribe to get notified of new episodes. Thanks so much for listening. And now it’s on with the show. Neale Mahon Welcome to the podcast.

Neale 1:45
Thank you Bill it’s an honor to be here with you today. And an honor to have people listening to what I have to say.

Bill 1:54
Yeah, it’s great to have you here. Thanks for reaching out, I really appreciate it when somebody reaches out and asks to be on the podcast. That’s exactly what it’s about. That’s exactly what it’s for. It’s about stroke survivors sharing their stories. So tell me a little bit about what happened to you.

What happened to Neale Mahon

Brain Stem Tumour & Stroke Recovery
Neale 2:15
Well, I’ve got an interesting medical history, to say the least. But specifically for my stroke happened back in May 21. of 2018. Actually, three days before my 31st birthday, and so now I’m 34.

Neale 2:40
So I was on my way driving to a just a normal kind of doctor checkup. And while I was driving, I put my arm out the window, really nice day in May. And my arm went numb. But I figured you know, it’s done that before because I usually pinch a nerve when it’s at a weird angle.

Neale 3:08
So I just figured I pinched a nerve. Well, it didn’t go back to normal. Until like a half hour later, an hour later. I noticed it was still numb and I had just gotten into my doctor’s appointment.

Neale 3:26
And I got up on the exam table. And my left leg went numb, literally that second. And I was like, you know, that’s really weird. And I told the, whoever the doctor was checking me out. I was like, Hey, you know, weird in my arm and leg feel numb. You know, what could be going on there.

Neale 3:50
And to me, I was like, Oh, it’s just really weird. It’s probably I pinched nerve again. You know, they did all the checkups on me blood pressure was great heart rate was great. I knew I didn’t have high cholesterol or anything like that. So there’s really no marker to give anybody an idea what was going on.

Neale 4:15
But I noticed after I got off, the table and started to walk out. I was kind of disoriented, and I have been to this doctor, this is my family doctor. So like I know my way around the building. And I was disoriented in the lobby. And I was like, well, that’s weird I started to walk outside.

Neale 4:39
And then I realized I was veering towards the left. So as I was walking, I was walking straight in my head, but I was actually walking to the left. And then I ended up kind of walking off the sidewalk. I didn’t hurt myself or anything. I just walked into the grass.

Neale 4:57
And then I said you know that’s really weird. That should’ve sent me off right away, first of all, but it didn’t. I said, well what the, you know, if I can jog to my car well then I guess I can drive home. If I can jog to my car, I guess we can drive home.

Neale 5:19
So I jogged to my car and I make it. I don’t know how pretty it was or not pretty, but I felt like I was okay. So I said, I’m gonna get in my car, go home. And I figured I was just really dehydrated, you probably heard that a ton of times.

Neale 5:38
I went home, I chugged a big 32 ounce glass of water. And I was just still tired. So I was like, I’m gonna lay down for a nap. Right before I layed down for my nap, I texted my wife who was at work, I said, Hey, you know, say a prayer for me. I’m not feeling too hot, or you know, not feeling very well.

Neale 6:03
You know, I layed down for my nap. And about 45 minutes later, I woke up from that nap. And I felt world’s worse. I was dizzy, I was really disoriented. But in my own home. That didn’t make sense. And so I called my wife I said, I don’t know what’s going on.

Neale 6:28
And, she works at the hospital. So everybody was like, Oh, my God, he’s having a stroke or something heart attack, or, you know, we didn’t really know what was going on at that moment.

Neale 6:40
But she knew that I needed to be, you know, at an emergency room. And luckily, my niece, who I credit was saving my life was living with me she was living in our house at the time. And so I called her and they’re like, Hey, can you drive me to the hospital? I don’t know what’s going on.

Neale 7:00
And she drove me to the hospital. The crazy thing is I went back I had her drive me back to the not the ER, but had her drive back to the family doctor. The wrong place, the place I didn’t need to go. Like they couldn’t do anything for me.

Neale 7:25
So on the way there. I just, you know, I realized that I really go downhill kind of quickly. And I called an ambulance and had the ambulance meet us at the family doctor to rush me to the ER, which is right down the street from my house.

Bill 7:47
I’m listening to you. And it reminds me of me. I just met you but I’m gonna be completely totally blunt. I did the same stupid things that you did. Thinking that I was doing the right thing. But that’s what stroke does. Like it messes with you in so many ways, and it makes you make decisions that you would not normally make.

Bill 8:17
At this time. When you’re feeling these strange symptoms. Your head is going no no it’s okay. It’s not that it’s nothing serious. It’s probably something else. I’ll tell you what I did, just so you know that I’m not lying.

Bill 8:32
For a week. I ignore the numbness in my left side for a week. I had numbness in my foot, it spread to the entire left side of my body. I was arguing with my wife with my doctor with my chiropractor about why I shouldn’t go to the hospital.

Bill 8:54
One other time because I had three blades one other time. The numbness came back as sunburn on my left side, and my way of fixing it was to get out of my car and walk around the car and if I walked around the car and it went away, then I was good. So I got back in the car and then it happened again.

Bill 9:20
I drove myself to the hospital. I mean, everything you say are the same crazy things that I did and tried to convince myself that something else was happening and it wasn’t serious. And it wasn’t life-threatening. And one other time. I was being driven home feeling sick being driven home.

Bill 9:43
We stopped outside of the hospital where I threw up and we got back in the car so I can drive to the hospital near my house. I didn’t drive somebody was driving me but he was an hour away from the house. hospital I was outside of when I was throwing up.

Neale 10:05
That’s crazy.

Bill 10:06
That’s crazy. That’s the same stuff that you did. And then you go to the hospital and then what happened then? like you’re at the hospital and then what?

Neale 10:17
So, you know, in the ambulance on the way the hospital, they were like, you know, asking me all these questions, and I felt cool. And awesome because I could answer them. I was like, ooh, a challenge. Yay. I like challenges.

Neale 10:31
Like, what’s your date of birth? I’m like, ring ring, you know, I said everything real quick. And they’re like, well, we think you’re having a stroke. But we don’t know, if you’re having the stroke, we can’t really tell what’s going on. because number one, that when I had my stroke, I was 31 years old.

Neale 10:51
So they don’t see a lot of 31-year-old stroke survivors or stroke patients in general. But, but so they take you to the nearest emergency room, which is actually a stroke-certified hospital.

Neale 11:08
And then they continue to do the stroke protocol here in the US, on me, you know, the MRI, CAT scan, blah, blah, blah. And they come back and they go, we’re pretty confident you’re not having a stroke.

They can make mistakes too

Neale 11:27
In that, you know, I’ll never ever ever forget that. Yeah, I sat in that hospital for eight hours in the ER with nothing, no. intervention, no, nothing. For eight hours until I got sent to the Cleveland Clinic. And in that eight hours, I went from having strength in my arm and my leg, slowly going away.

Neale 11:58
I could feel it, like slowly getting harder to open and close my hand. My strength was leaving me. And I was like, Oh, here we go. You know, I still didn’t know what was going on. You know, we all have so much faith in doctors and medicine and hospitals that we forget that they’re also you know, they’re human, they can make mistakes, too.

Neale 12:26
So I got to transport to the Cleveland Clinic. Thank God that, you know, I arrived there probably at midnight that night, or at one in the morning. And within five minutes, they told me to stick my tongue out. They said, stick it straight out and they went all the way to the affected side. And they’re like, you’re having a stroke.

Neale 12:49
And then, by that time, I was way over the timeframe for any type of unconventional you know, TPA, or anything like that.

Bill 13:03
Too long, too long and past.

Neale 13:06
And I mean, thank God I was breathing, actually.

Bill 13:10
So, you know, now you’ve been diagnosed, you’re in the hospital, they know you’re having a stroke. Did your condition deteriorate? What happened then?

Neale 13:21
I mean, it got to a by the time I got to the Cleveland Clinic, I couldn’t move anything on my left side, not my toes. My fingers couldn’t move a thing. Probably couldn’t move, I think for about three or four days.

Bill 13:35
And your stroke was an ischemic stroke caused by a blood clot. Do they know what caused the blood clot?

Brain Stem Tumor & Stroke Recovery

Neale 13:43
Yeah, so I was born with a brain tumor, called the Ganglioglioma, which is a brainstem tumor, and back in early 90s, I went through about three years of chemo and radiation. And it turns out that they believe that the radiation that I did back in the day caused by blood vessels in the back of my neck to atherosclerosis. And, that’s what caused the stroke.

Bill 14:12
Was it a dissection or was a part of the blood vessel actually, what caused the clot? Did a piece of your blood vessel come off?

Neale 14:23
No, I don’t think anything came off.

Bill 14:29
It sounds like it might be a dissection. It sounds like something has changed in the inside of the blood vessel. Which makes the blood flow slightly differently, and as a result, just creates a little blood clot just because of the pressure that’s there, and might throw it off somewhere.

Neale 14:49
That makes sense.

Bill 14:51
Wow man so you’re not new to all of this kind of stuff. So this brain tumor. Do you recall what kind of challenges you were facing back then as a child?

Neale 15:05
Nothing really. So I’m lucky in that aspect. I guess when they found it. I was kind of dragging my left leg, I believe it was my brain tumor I guess is slightly left sided or I’m not 100% sure. But basically I, you know, for 30 something years, I had a completely normal life.

Neale 15:35
I didn’t really have anything because we found it early enough and they shrunk the tumor. They couldn’t go in because it’s in my brainstem, they couldn’t go in and get it out. They can only shrink it with chemo radiation.

Bill 15:48
Was your wife there when you found out that you had a stroke? Or were you alone?

Neale 15:53
My wife was there. She met me at the first hospital. So and then, you know, my mom met me there. And you know, my family met me at the other hospital.

Bill 16:05
How did they take it? I know it’s an obvious question right?

Neale 16:15
Like absolute angels and professionals. I mean, you know, my mom, my family has been, you know, I’m the middle child, I have all the so called problems.

Bill 16:30
Of a middle child.

Neale 16:32
Yeah, I got screwed with all the problems.

Bill 16:39
I’m sorry to hear that, man.

Neale 16:41
No, that’s all right. That’s right. They’re all good. Not really, but uh, you know, and I was also you can’t really tell in this picture but I was also born with a cleft lip palate. And so, you know, I’ve gone through what, like, 25 surgeries throughout my entire life to correct that. And, and the tumor, and now I had a stroke. It’s like, jeez anything else to throw at me?

Bill 17:09
Enough already enough?

Neale 17:10
Yeah. But they were amazing, you know, I really couldn’t have done, I wouldn’t be where I am without my family, for sure.

Bill 17:20
You know, your history of medical situations, conditions, whatever you want to call them, does that help you when somebody says to you, you’ve also had a stroke, Neale, like, does it help you with your mindset? Or does it help you with how you’re going to move forward and overcome things?

Bill 17:39
What goes through your mind when now you’ve had a stroke? Like, I know, what goes through your mind is well, I know, part of it might be I don’t want to be in the situation or stroke’s no good, or what I have to do to recover? But is this some of your history that helps you now?

Neale 17:58
Are you speaking of like the mental aspect of that?

Bill 18:03
Yeah, your approach to life and your approach to overcoming? Like, how do you move forward?

Neale 18:11
I mean, I completely understand that because now I’ve had a stroke, you know, strokes, not only affect you physically affect your emotions, and very much.

Intro 18:22
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things.

Intro 18:41
But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

Intro 19:02
It’s called the seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

Neale 19:25
Something I’ve had to deal with now but I haven’t really ever had to deal with it. I’m kind of a full throttle guy, you know, the gas pedal is either down or it’s you know, the brake time.

Neale 19:39
So I always have approached life as like, you know, tomorrow’s tomorrow, just try to be a good person and then if you think you’re being a good person, try to be a better person. And, try to bless those around you with what you can. But you got to bless yourself too. So you got to take care of your own person too.

Bill 20:09
When you’re having a terrible day, how do you be nice to other people? But how? You know, how is it possible to focus on others when you’re having a really bad day? Or is that the time to go? Hang on a sec.

Neale 20:22
I always I understand, what you’re saying I always feel like, you know, it could be worse. You know, I got enough, checkboxes, they have a lot more problems.

Bill 20:35
How long did it take you to get back on your feet, your stroke affected your entire left side. So what happened after your hospitalization and your clot was sorted?

Neale 20:47
So I was in acute therapy for eight weeks at the hospital, so I didn’t leave the hospital for two months, or two and a half months, or whatever it actually was. Thank God for the Cleveland Clinic and their therapists over there, because they’re number two in the planet for a good reason.

Neale 21:09
Because they’re really good at what they do. And I still go to therapy once a month over at the clinic. And I have my own home program that I work on all the time. So if not every day, every other day.

Bill 21:28
Yeah. And how long has it been since the stroke?

Neale 21:32
And it’ll be three years. On the 21st. of May.

Bill 21:40
Sounds like your your approach, has been kind of created from that early days, probably the brain tumor in that you had a brain tumor, you probably did, you might accurate when I say you thought every day after the brain tumor was sorted, that is a blessing and therefore, just keep moving forward, just keep going, just get stuff done, just achieve what you want to achieve live a happy life, just be nice to people.

Bill 22:12
Is it fair to say that that approach was the one that you use previously, and now it’s worked for you then and it’s going to continue to support your recovery moving forward?

Neale 22:25
I would agree with that. You know, I definitely would agree with that. I think, I don’t know, if you’ve seen my website or anything, you know, one thing I have on there is my, my be 100 you know, 100%, mental 100% physical, and 100% diet and nutrition, after you have a stroke, all of those things are affected.

Neale 22:51
You know, your diet, your, your mental state, your physical state. And so I choose every day to be 100% and all those you know, if I’m going to do it, I’m going to do it 100% not 70% 30% 20% and sure I’m not perfect. Nobody is, you know, I’m not the best at diet. I wish I was better. But, you know, everything comes with practice.

Bill 23:26
Yeah. And you strive I believe in striving for the 100%. And if you get 75% that’s better than 60% yeah?

Neale 23:37
You know, talking to Kent. Kent, who was one of the people on your podcast, I was talking to him yesterday, I said the only thing I can guarantee anyone is if you don’t do anything, you have a chance of zero recovery. It’s not just gonna come back if you sit on the couch and don’t do nothing.

Bill 23:57
Yeah, Kent Bragg Episode 138. And yeah, he’s a pretty cool dude.

Neale 24:09
Yeah he’s from Ohio too, so he lives like an hour and a half away from me, apparently.

Mortality for Neale Mahon

Brain Stem Tumour & Stroke Recovery
Bill 24:13
Ah, wow. Okay, that’s great. Isn’t it amazing? A guy from the other side of the planet in Australia, Connected to a dude from my Ohio, man. That’s awesome. So your wife. How has she dealt with all of this? How have you noticed her going through this process with you? Has it been difficult for her? Have you guys discussed serious issues like mortality and all that kind of stuff? Because they’re the kind of conversations I had, you know.

Neale 24:49
Yeah, it’s really funny that you say that because three weeks before I had my stroke, we started our will. And guess what we finished it in the hospital. After my stroke, when I can barely move my left side, I called up the attorney I said, Hey, I’m in the hospital, can you come meet me and he could. I was just like, Man it was bad you know, that’s what it’s for.

Bill 25:22
You guys are hardcore. Doing that in hospital that is hardcore, let me tell you. I completed it about I reckon maybe two years later, or a year later, something like that. But I did definitely complete it very rapidly. I was 37 years old at the time. So I did complete it rapidly as well and made sure that it was done, because I felt relief when I did it. Did you feel some kind of relief?

Neale 25:53
Yeah, I felt like, you know, okay, you know, I don’t have to. It felt like, I don’t have this mental power on like, what if, what if, what if, what if, I kind of have answer for that. You know, now my mental power is how can I best rehab? You know, and then how can I work and make money and you know, I don’t want to be less of a husband to my wife.

Neale 26:21
You know, and I’m sure anyone who has a stroke that has a spouse really feels that way, you know. And there’s also things that I just can’t help her with, you know, that are so mundane. And what just trigger all my neuropathy and just, I just can’t do it, because I’m a grouch. When that happens.

Bill 26:44
What are some of those things because I relate to that I relate to being a grouch when I can’t do things, and what are some of the things that trigger you.

Neale 26:54
One of the things that triggered the pain are like holding, so like, fine movements, too much of that will cause me to not sleep at all that next day or, I’ll get like two hours of sleep, and be a terrible human being the next day. But that’s really the big one. And carrying anything that weighs more than a couple pounds.

Neale 27:23
You know, I really, we were lucky to have Greyhound dogs full grown greyhounds, so I was really worried after I had my stroke, that we’d have to get rid of them because they like to lean on you. And they’re tall. So they kind of hit you right above the knee sometimes, you know, and I’m like, Well, I just need to be like flipped right above the knee when I came home, like fall over.

Neale 27:53
So but I’m able to really do a lot. And there’s been some breakthroughs in medical technology that I’ve really, really been a fan of, like the XTERN AFO, which is a new like exoskeleton AFO that goes on the outside of the shoe. And it’s really allowed me to just step everything up. You know, I’ve only had it for a week and I tell you it saved my life.

Bill 28:24
Yeah, maybe when we’re done, maybe you can send me the link. And I’ll include that link to that product in the show notes. So if anyone who’s listening is curious about this particular AFO where they might be able to find a little bit more information about it.

Neale 28:41
Actually, yeah, I have a bunch of that. I don’t know if you’ve ever met Martin Jackson. He apparently is a Australian, like a championship shot putter in Australia.

Bill 29:03
Well, here we go. Now the person from Ohio is gonna tell an Australian about another Australian. That’s classic.

Neale 29:11
Well, I just wanted to prepare that for you know, information on how to get the brace in Australia.

Bill 29:19
So tell me about Marty, is Marty a Paralympic athlete?

Neale 29:24
You’re probably reading it. Yeah.

Bill 29:26
Yeah. Okay. So he’s a world champion. shot putter and he uses an AFO, and there’s an image here of him with his AFO winding up, ready to launch a shot.

Neale 29:47
Yeah it’s pretty cool. And that’s the exact one that I have. Okay. It goes on the outside of the shoe. So all you need is your shoe size.

Bill 29:57
That’s brilliant good to know, I wonder if it’s widely known. Do you think it’s widely known that this new version of AFO is available?

Neale 30:06
No not really no sadly, no, it should be and I’m working on that.

Bill 30:13
Was it expensive to get?

Neale 30:16
It was 950 bucks I think. So a little bit of money but not like buying a car.

Bill 30:27
So you know about Marty? What happened to Marty? Did Marty have a stroke as well?

Neale 30:30
I have no idea. I just met Marty three days ago.

Bill 30:34
You met him online?

Neale 30:35
Yeah, I met him on the turbo med foot drop group, which is turbo med makes the brakes. So it’s a Facebook group about people with foot drop.

Bill 30:47
Wow. You know, Marty, probably lives an hour away from me. An hour and a half away.

Neale 30:56
Yeah. He said he lives in Ocean Grove. Victoria.

Bill 30:59
Oh man that’s about an hour and a half from me.

Neale 31:02
I don’t know. I’m sorry. I’ve been to New Zealand, but I haven’t been to Australia.

Bill 31:08
You’re missing out. You better get here at some point when COVID and all that junk lifts. You got to get here, man.

Neale 31:13
Yeah, I will. Absolutely.

Bill 31:15
Now let me ask you a question about COVID. Because it’s really controversial, what’s happening at the moment with the vaccines. And I’m not, I’m not one to tell people what to do, whether they should have a vaccine or not. And I’m not an anti-vaxxer, or a vaxxer, or any of those kinds of things.

Covid vaccine and risk of blood clotting

Bill 31:36
But you’ve had a stroke, right, and somebody says, your stroke was caused by a clot and all that kind of stuff. And now they’re talking about a vaccine, the AstraZeneca vaccine in Australia has been recommended for people above 50. Because for people below 50, it’s causing blood clots.

Bill 31:56
What makes this what goes through your mind when you hear that, because I’ll tell you, firstly, I’ll tell you what goes through my mind, I’m, I’ve had a stroke already. And I don’t want to have another one. And I’m not going to do anything that’s going to put me at risk of potentially having another stroke.

Bill 32:12
So AstraZeneca is off the table. For me, there’s no chance I’m getting an AstraZeneca vaccine in any way, shape, or form whatsoever. And that’s even making me reconsider my, you know, my desire to get any other vaccine for COVID. So I’m a little bit concerned and nervous about it.

Bill 32:32
And I’m going to delay getting vaccinated as long as possible, because it seems like, in the end, we’re not going to really have a choice if we want to travel or if you want to go to certain places. We won’t be allowed to go if we don’t get proof that we’ve been vaccinated. How do you feel about this situation that we find ourselves in as a stroke survivor?

Neale 32:56
Oh, exactly the way you feel, you know, I’ve got the Pfizer one. So got one already.

Bill 33:11
Okay, tell us about it was that a long ago?

Neale 33:15
We have like a week or two ago, I have faith in the medical community but not undying faith in the medical community. There are some things that are kind of out of my control. And if Astra Zeneca was the only one to get, I would absolutely not get it. You know, or because they would come in my thought it would be they would come out with rules that say, Hey, if you had a stroke before, obviously, you can’t get the vaccine.

Neale 33:54
You know, because obviously, we can’t put you at risk for a stroke, when a stroke could kill you faster than COVID-19 work. And I’m not a medical person either. I’m either here nor there, but I’m not stupid at all. Just go do whatever sombody tells you to go do.

Bill 34:15
Yeah. With the vaccine that you did get. Did you experience any side effects any of that stuff that they talked about?

Neale 34:22
Nothing? Nope.

Bill 34:23
And is there a second one that you have to get? Do you have to get a top-up or something?

Neale 34:27
Apparently, in a couple weeks, going on vacation with my wife. So we’re just going a couple of states down so I need to reschedule the time. But I’m supposed to get one more but I’m like, you know, do I have to? It’s not like it’s been you know, my only fear is exactly what you know, everybody else fear is, is that it’s not not been tested enough thoroughly enough. You know, What if, in the what if for stroke survivor is a whole different ballgame for somebody who doesn’t have problems.

Bill 35:10
Yeah, we’ve already been there we know what stroke and problems are like.

Neale 35:15
I mean, honestly, my brain can only take so much beating after a while, you know, your brain can only take it so many times till it’s done.

Bill 35:25
Yeah, I agree with you, man. I know, it’s a big conversation. And I don’t hear a lot of people having in the stroke communities that I’m involved in, and not that. Not that I’ve instigated that conversation or not, but it seems like people are just laying low and trying not to have those type of concepts. They seem to be controversial conversations to have, and I’m not sure why.

Bill 35:48
But I know that I haven’t met a lot of stroke survivors that are keen on on having a vaccine and, and I completely get it, I completely understand. So now, are you easing back into work? Where are you at with all the stuff that was put on hold? Because you’re in hospital? Eight weeks in rehab? How long did it take you before you started to get back into? Let’s call it quote unquote, you know, back to normal or normal life or whatever.

Neale 36:22
I’m real far away. Still, I am real far away from normal life. We’re in you know, I’m so easing back into it. You know, I can’t, I can’t honestly say I’m 100% aiming for sure. You know, I give it 100% effort. But my 100% now is like 40 to 50% what it used to be. And then we are stroke survivors, you know, maybe have to like figure out how to live like that, for now. Have to be, we have to be okay, with it.

Neale 37:06
Just Okay, knowing that tomorrow, it’s going to be similar to it was yesterday. The one thing I hate is the word the new normal. You know, I hate that all the time in the stroke community, and all the time outside of the stroke community anyways, now COVID going on the new normal.

Neale 37:25
If yesterday was the same as today, then sure why that. But, but my days are never the same. I you know, one reason I still go to therapy, or one of the important reasons I still go to therapy, I get that statistical readout of how I am doing, how my physicality doing what, you know, if I feel stronger, that doesn’t mean I am stronger. Unless I get a readout of how strong my grip is. I don’t know how strong it really is. or weak, you know?

Bill 38:07
I love what you said about the whole, my 100% now is about 45%. I mean, that’s a beautiful way to describe what stroke survivors go through that is exactly it that’s they’re words that I’ve been lacking for many, many years. My 100% now is 45%. Or, I remember people asking me, how am I and I would say I’m always 90% or 95% back to normal, I would say.

Bill 38:37
But I was nowhere near 95% back to normal. I was nowhere near it. But I didn’t have words to describe where I was at. So I like what you said my new 100% is about 45% of my old 100% that’s created clear to people that there’s something that we’re still trying to gain back that we’re still trying to achieve.

Neale 39:02
I can’t run I can’t lift things to carry. I can’t, you know, can’t walk up and down the stairs without using the handrails. There’s a lot of things I can’t do. And all of those things that I can’t do, I used to be able to do it like 100 miles an hour. And the one thing that upsets me is that some people talk about being 100% back to normal or 90% back to normal.

Neale 39:35
And I think they’re really giving themselves a you know, a shot in the foot when they say that because they’re saying, some people are saying that, hey, this is my new 100% and you can’t think like that. Because you If you think like that, then you won’t get any better.

Bill 40:07
What hear what you’re saying so what you’re saying is, you got to set your sights higher, and, try and get further along than where you are now?

Neale 40:17
Yeah, I mean, I can’t tell you how many times I’ve been to therapy, and they said, Well, you might not get much more bad. I keep coming back, my levels keep getting better, and better and better. And then sometime I hit the dreaded plateau. And when I hit a plateau. It’s, really frustrating. But I know that I just got to keep working. If I stop working, I won’t get better.

Stroke recovery timeline


Bill 40:46
Out of curiosity, did you put a timeline on your recovery, some stroke survivors do the whole and I get why they do it. Kind of frustrates them later, when they haven’t achieved that they kind of give themselves off, in six months, I’ll be back on my feet, or in 12 months, I’ll be back on this or in 16 months, I’ll be doing this.

Bill 41:05
And what is interesting to me is that they’ve I don’t know how they come up with it. Like, I don’t know how they come up with this number that they’re going to use to once they get there, they’ll be better. And what seems to keep happening for people like that is that they get to that number, they’re not better, and it upsets them more than anything, and then they kind of take a little spiral downwards.

Bill 41:32
And to get them out of that. It’s really difficult when they set these goals that they don’t achieve. They get really disappointed. And I don’t know how they come up with these figures. But they start they’ve got to start somewhere. So I suppose that’s how they they start. Did you ever do that? Did you ever put timelines on your recovery?

Neale 41:52
I had a, I would say I definitely had a theoretical timeline. But you know, I went from not being able to lock and use my hand to go, okay. If I all of a sudden, I can move my hand now and have a grip now and walk then there’s progress. And I can’t be upset about progress.

Bill 42:14
Right. So you focus on the small wins. And, keep working towards the big wins.

Neale 42:23
You know, I may have dropped foot for the rest of my life. You know, sadly, that may be the case. But that’s not gonna let me be upset about it, you know, doesn’t mean I stop trying, because the only thing I’m guaranteed is to have dropped but for the rest of my life, if I stopped trying.

Bill 42:49
On Instagram, it’s interesting that you just sent that on Instagram. People who are listening can follow me at recovery after stroke. Is my Instagram. I just my last post was how do you cope with knowing that you are going to have deficits for the rest of your life? That question, just went nuts. You went nuts. And people asked so many responded. heaps. I’m curious about that for you. Like how do you cope knowing that you’re going to have deficits the rest of your life?

Neale 43:25
Well who’s to say I am, that’s my answer to that you know. Am I dead yet? You know, I’m not it’s not the end of my life yet. So I’ll let you know when I get there.

Bill 43:38
Okay, good. All right. Hopefully in about 50 years. We can both have that conversation.

Neale 43:44
Yeah. On some island in the Caribbean.

Bill 43:49
I’m happy to be there. I will, definitely be there. No problem. Tell me about did you do any emotional counseling or psychological counseling or anything like that? Did you seek out talking therapies for support?

Neale 44:05
Yeah, I absolutely. Did. You know, I I find psychology can be helpful. You know, I am I am bullheaded. So that’s just the way I am. You know, I think that has aided me in my recovery, and also done the exact opposite sometimes, you know, I mean, I just hit my head. Like a week ago, I hit my head harder than I have ever hit my head. And I was laying on the ground going, you idiot.

Neale 44:42
I said a lot of other words to myself besides that, but, but I got overly confident about what I was doing. And I knew I shouldn’t have done it. Right before I did it. I did all this could end up real bad, right before I did it. And all I did was I was breaking a stick a big stick at my sister’s house.

Neale 45:05
I was just breaking this stick, I put it in a frame by the tree and I pulled off. It shot me backwards and I ended up blasting my head on the grass, luckily. But I hit my bashed my head off the grass. I told my therapist, he’s like, man, don’t do that anymore.

Bill 45:26
I’m gonna agree with you’re therapist man I’ll tell you what though, I’ve become a little less. I’m not sure what the word is. But maybe I’ve got less awareness about where my head is in the world like something’s missing. Because I’ll tell you what, I’ve smashed my head since the stroke. And since brain surgery because I’ve had surgery now there’s a plate on the side. I’ve smashed my head so many times.

Bill 45:52
And it hurts so much more. Because I associate people touching my head and doing things to my head and impact on my head I associated is a really bad thing, which it is but, but since the surgery in 2014. Like I reckon I do way more. I just don’t seem to pay attention or have enough awareness or vision of what’s above my head? Like, it seems like, I’m not I’m missing something. I don’t know what it is.

Neale 46:27
Yeah, well, you might want to get tested. Correct. That may be like spacial awareness, or, or proximity awareness? Like how close my hand is? That kind of stuff? I think, you know, one technological, interesting thing that has come about is like a virtual reality, and kind of training for that visti role. I don’t know the words like that risky role training, or retraining your brain, how to determine how far and how close objects are.

Neale 47:08
I think that’s a really, really interesting technology. I’m lucky enough myself to have a quite interesting setup that I put in my basement with a virtual reality system, some workout stuff, and I, I, I love now riding a stationary bike, because that’s the number one way I can really get some intense cardio with.

Bill 47:38
Yeah. Do you ever worry about? What if another stroke? Is that issue that you have with the blood vessel that has atherosclerosis? Is that issue resolved? Or what is the approach that the medical team is using to support that not causing another clot?

Neale 48:03
Yeah, it is resolved. And then it took me a while to come to terms with their not so good answer and how to resolve the problem. Basically, like take aspirin and take a take a lift or take, you know, get your LDL down and I’m like, it already is down. Like what’s the what’s the problem?

Neale 48:25
You know, my mindset is always if it ain’t broke, don’t fix it. But it took me for a while to accept that those would be good alternatives. And, you know, like you were just saying, the psychology aspect, I did see a psychologist for a couple sessions, you know, having just really scared about having another stroke and it really, really messed my whole day.

Neale 48:54
After I just had a MRI, which is a, you know, the arteries? And they came back and said, Hey, it looks good. But now it’s like, Oh, here we go again. But we think you have an aneurysm I was like what? Anything else? Any other things you wanna tell me?

Bill 49:29
Was it confirmed?

Neale 49:30
No. My surgeon looked at it said no that’s not an aneurysm. That’s just the weird way to look at the picture or whatever. And so I you know, and I was a mess after that. I was like, oh, gee, here we go. Yeah, it takes. It literally takes 100% of my effort to just put stuff like that aside, you know.

Neale 50:00
I have my life, I have my faith. I have my friends, I have my family, you know? If Now is the time, then let it be, you know, I got no power in that. I don’t do drugs, you know, you know, I’m trying to keep myself fit as best I can, you know, try to eat healthy. Yeah, I try to do what I can do.

Bill 50:28
Yeah, you keep on top of the things that you can influence and you can help out with and you can do and the things that you can’t, you can’t end, there’s power in giving up on trying to control things that I out of our control, we can’t control what’s going to happen.

Bill 50:44
So there’s a real for me, when I’m able to do that I get a real what’s the word, I get a real kind of a burden ease. As you know, the shoulders get lighter, there’s less I have to worry about when I don’t have to worry about the things that I can’t control is perhaps I’ve learned to deal with the fear.

Bill 51:11
And I’m not fearful of dying anymore. And one of the reasons I’m not fearful of dying is because I’ve put things in place. I’ve told my children, I love them all the time. My wife, my parents, my family, the people that I run with, I’m trying to make better, I put my will in place so that if I do get hit by a bolt of lightning, then everything that needs to be in place for them.

Bill 51:40
My last wishes are known, and it’s all sorted. So I’ve done a lot of things. To prepare me for something that I hope doesn’t happen for another 50 years. But in the event that it does, of course, that’s all been sorted. So they’ll be okay. And, and now I can let go of the fear of that.

Being afraid is something to be afraid of

Neale 52:03
Yeah, you know, I think fear can be a very powerful thing. You know, being afraid is something to be afraid of.

Bill 52:20
Oh, man, hang on a sec say that again.

Neale 52:25
Being afraid, is something to be afraid of.

Bill 52:30
That’s deep man that is real deep.

Neale 52:35
Came straight from Ohio to Australia.

Bill 52:38
It’s so true, though. I mean, talk about a real meta version of paying attention to being afraid. Because we know what being afraid of things does, he puts us in a cycle that’s not good, right? So if, if you’re afraid of being afraid, then hopefully you won’t get to be afraid.

Bill 52:59
And therefore, you won’t go into these cycles of stuff that happens that causes problems in your mind, in your body, in your emotions, in your relationships. Yeah, if we can put that aside, then I think the best way to put it aside also is that is that you have to put things in place and work things out and sort things out and actually tackle the hard stuff like the wheel because I know that can be confronting for a lot of people, but it is hard.

Bill 53:31
If you do that. It does it lifts some kind of a burden from the shoulders. For me, it was so freeing that I had done that it just felt great. So that fear has gone and I like what you’re saying how does your faith help you in your recovery as well? Because it seems to me from what we’ve said already, that you are somebody that has faith in something other than what’s going on, on this planet.

Neale 54:03
I’m a Catholic. But you know, I truly believe that. And I heard this from my pastor rather like a month ago. You know, there is no faith without works. You can’t have faith and then not act on your faith. Rehab, there’s no progress without work. You can’t progress without working at it but work, you have to just kind of make money. You know, money doesn’t grow on trees, I’m sure you heared that before.

Bill 54:42
I like what you’re, saying and in recovery, what I find is with the people that I’m coaching and supporting on their stroke recovery, the people who are the most active, get the most results and I’m not talking about physical results or they get results.

Bill 54:59
They just feel better, they feel different, they change, they adjust, they come to terms with things, they find new ways to be themselves, they find new ways to find what they’re passionate about. They learn new skills, the more they focus on the solutions to their problems, the more solutions they find. And I find the people that put less effort into their recovery, they get less results. That’s pretty straightforward, isn’t it?

Neale 55:31
Yeah. I think we got to stop telling people that, you know, you can only go so far, you know, don’t think that you’re gonna get much more back. For me, it’s like a challenge. I go watch me. But for someone else, it’s not that much of a challenge, like, Oh, okay.

Neale 55:58
And, oh, okay to that answer is, you know, terrible, depressing. It’s all the, it’s all the bad stuff. And to make your situation worse, that’s all you got to say to somebody is, you know, well, you know, that, after the first couple months, if you can’t move your leg, you’re probably not going to be able to move it. You know, good luck living 30 years without moving your leg.

Bill 56:25
And they still do that a lot. Even in Australia, a lot of stroke survivors say that, that the doctors still do that. And I have met people who have taken that information from the doctors as gospel, and they lived by it, and then they’ve got no results. And thankfully, I’ve met a lot of people that have said, screw that I’m not listening to you.

Bill 56:47
I’m not taking what you’re saying, as the truth, I’m going to do what I can, and most of them get better results than the doctor expected. And that is great. And why doctors do that? I don’t know, I don’t get it. And if we could get them to stop doing it would be fantastic. I don’t think that we can they judge everybody based on statistics. And then they apply those statistics to everybody. And that’s real harsh.

The biggest disconnect

Neale 57:20
You know, for me, I think there’s a big Avenue. I think that and this is why I created my website and my business is to stroke fit Incorporated. You know, I think that the biggest disconnect is in between when you come home from the hospital.

Neale 57:42
And when you’re home, and how do you rehab if you can’t go to therapy, or even if you do go to therapy, because the therapist gives you stuff to do, but he’s not there with you doing it in your house. And everybody’s got different tools available or different challenges available to do those things.

Neale 58:04
It’s not cut and dry. It’s not like here, this 80 year old guy gets the same thing as you get. I’m like, Why are you giving me the same thing? If it’s hard for me to do that. It sure is hard for that guy to do. You know? It’s just, there’s so much non-medical speaking like therapies or like, things that you can do.

Neale 58:29
There’s so many different things you can do out there that are just available that the doctors aren’t going to tell you about because they’re not FDA certified. Or you know, government certified or okay by the hospital. The bosses you know, everybody’s boss in therapy world.

Neale 58:49
Your last your last. Let me look it up here real quick. Last lady that just talked on your show. Forgot her name. Karen Moorman. Yeah, Karen, and Karen has an Instagram and I looked at Karen’s Instagram, and I saw that she was using a Bosu ball upside down. It was awesome for your hips and everything like that.

Neale 59:24
I got a Bosu ball downstairs. And I’ve had it for about two and a half years. It wasn’t pumped up probably for a year and a half. But I can’t really use it because my ankles not really secure. But in this brace that I’m wearing, it is secure. And so I did exactly what Karen just did.

Neale 59:45
I flipped the ball upside down and did standing squats but in order to like get myself onto the ball safely and kind of stand there. I had a pair of TRX bands. I was, suspension trainers, and I was hanging on I need something to hang on while I’m sitting there. So go down, do a squat, come up, go down do a squat, you know, and then kind of see if I can let go and watch my body work, you know.

Bill 1:00:17
So when you’re describing that ball you’re talking about, it’s a circle and underneath it is a half a, half moon ball, that’s blow up, and you’re supposed to stand on the platform. And then it’s supposed to give you it moves as you move as your weight shifts, and you’re supposed to get a tighter core, and it’s supposed to help balance.

Bill 1:00:51
And Karen is on Instagram, her Instagram handle is @stroke_sur_vivor, and I’ll put the link on the show notes there. So people can find that, but also, Karen was on episode 139. And we spoke about her stroke journey and the stuff that she was doing, that I really loved.

Bill 1:01:23
You know, she had a couple of really good quotes as well, she spoke about being perfectly imperfect, and she’s getting creative as well, just like you’re talking about, you know, doing the things that she can within her own home within her limits, to continue rehabilitation and continue getting better at home in a way that’s really safe and comfortable for her to do.

Neale 1:01:50
Yeah, I’m also a big proponent on like, doing as many research studies as you can, you know, because a lot of the the universities like Melbourne University and Cleveland State here, they have a lot of, you know, federal grant money or whatever it is to do research projects.

Neale 1:02:12
They, they need stroke survivors to do that. And, you know, on my website, in the Cleveland area, I have a registry that the Cleveland Clinic actually made up a registry to put everybody down. So that when the college professors or whatnot, are ready to do a research study, they have a pool of people that fit certain categories that they already know who to call, you know, they don’t have to like, seek them out. Because the more work they got to do. The more work anybody’s got to do the worse.

Bill 1:02:53
Yeah. And it’s kind of an opportunity to get some free support for access some services they could not otherwise get.

Neale 1:03:05
What I’m throwing is like, three months of free therapy, I’ll take it.

Bill 1:03:10
That’s great. That’s great, man. That’s awesome. I love your out of the box, kind of thinking on how to get access to things that some people would not get free. Definitely, universities are always looking for people to support them in their programs and in their research and in their work. So yeah, if it’s convenient, it’s a no brainer. It’s perfect.

Neale 1:03:40
Yeah. And it’s usually like a more unconventional therapy. Or a newer therapy.

Bill 1:03:47
Yes.

Neale 1:03:47
Because, you know, they’re not going to just do the same old job that you’ve been doing. You know, for 50 years.

Future plans for Neale Mahon


Bill 1:03:56
Yeah, yeah, it’s cutting edge. It’s most recent. What’s the as we come to wrap this up? What’s on the horizon for you? What are you hoping to achieve over the next few years as your recovery continues?

Neale 1:04:15
You know, get my get that stroke fit business up and running and providing people the tools and the help they need to really make themselves better and set them up for progress in their life. For me, personally, I still have to run. I still, I’m desperate to be able to run and jog and swim.

Neale 1:04:41
can’t do any of that because I have too much spasticity going on. Too many limiting factors at the moment that I keep trying to power through. And I’ve been I’ve been seeing amazing progress, but it’s just I always I’m almost there, I’m almost there. I’m almost there, you know. And being almost there kind of motivates me also in another way and meeting people like you, learning about podcasts like this.

Bill 1:05:16
The great things to info I am, very, very early on in the podcast, I interviewed a stroke survivor, somebody who had a stroke when they were a child, probably eight years old. And in her early 40s, she has foot drop. And she uses an afo. And in early 40s, she decided that she was going to hire a trainer to get back to running to be able to run again.

Bill 1:05:47
So a long, long time had passed, and she hadn’t been able to fulfill that goal. So she decided that she was going to do it. And she was on episode 28. Donna can peasy. And an episode 28. She talks about how to get back to running after stroke. And she talks about how she was challenged to run a marathon, not just a few kilometres that she was initially wanting to do.

Bill 1:06:18
So in the beginning, she thought, I’m going to go and learn how to do four or five kilometers. And her trainer said to her, no, we need to run a marathon. So she went quickly from being somebody who was just trying to get back into running to becoming somebody who was going to run a marathon. And she ran a marathon, I think back in 2012, or 13, or something like that.

Bill 1:06:43
And it’s a really inspiring story, because it’s what she did, she got back to running after the stroke. But it took her quite a long time. And she fell, and she struggled and she had injuries. And she suffered pain and all these things. But they slowly but surely, they overcame all these little obstacles and all these hurdles and all these problems. And she ended up running a full marathon man. It was slow, but she did it.

Neale 1:07:11
Yeah. My main goal, goal wise is, but by the time I’m 40 I want to do an Ironman for a little bit, but the half Ironman, so it’s not gonna be 30 there’s no way I can do the whole 30. My cousin is an Ironman. So and he is my age too.

Bill 1:07:34
Well done on that. Man. I hope you do get that I couldn’t think of anything worse not before the stroke, that after the stroke, there’s no chance I’ll be doing anything that takes 40 kilometers. And there’s no chance I’ll be doing anything that is a full marathon a full Ironman no chance in the world.

Bill 1:07:50
I don’t enjoy challenging myself like that I never have you know, and I’m inspired by all the stroke survivors who have done those types of things after stroke. Absolutely you guys are amazing. And I take my hat off. I’m never ever gonna do it.

Neale 1:08:08
Well, I’ll get a hat made for you at the end of the line. And maybe I’ll come down in Australia.

Bill 1:08:20
You can do it in Australia. Man, I will be cheering for you at the finish line. There’s no problem whatsoever. I look forward to it. I want to thank you for reaching out. I really appreciate it when people contact me and say, can I be on the podcast? I love meeting new people. I love sharing stroke stories.

Bill 1:08:39
And I just like your approach, man, I think your approach is one that people need to hear about. And I like that you’ve also made it a little bit about other people. It’s not just about you, this recovery that you’re on, is trying to somehow incorporate other people and support them.

Bill 1:08:56
And a lot of stroke survivors do that. And I don’t understand why I did the same thing. I don’t understand why. But that’s what we need, isn’t it? We need to support each other because nobody else gets us. No one really understands what we’re going through.

Neale 1:09:11
That’s absolutely correct.

Bill 1:09:13
Neale, thanks so much for being on the podcast.

Neale 1:09:16
Thank you Bill.

Intro 1:09:21
Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

Intro 1:09:38
The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 1:10:00
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

Intro 1:10:16
Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 1:10:39
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Intro 1:10:55
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The post 140. Brain Stem Tumor & Stroke Recovery appeared first on Recovery After Stroke.

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Neale Mahon experienced an ischemic stroke nearly 30 years after radiation treatment to deal with a brain stem tumor. Neale Mahon experienced an ischemic stroke nearly 30 years after radiation treatment to deal with a brain stem tumor. Recovery After Stroke 1:11:17
139. Cryptogenic Stroke Recovery https://recoveryafterstroke.com/cryptogenic-stroke-recovery/ Mon, 12 Apr 2021 13:26:50 +0000 https://recoveryafterstroke.com/?p=6010 https://recoveryafterstroke.com/cryptogenic-stroke-recovery/#respond https://recoveryafterstroke.com/cryptogenic-stroke-recovery/feed/ 0 <p>The last thing Karen Moorman expected after a Stroke was that the Cryptogenic Stroke Recovery would make her migraine headaches go away for good.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/cryptogenic-stroke-recovery/">139. Cryptogenic Stroke Recovery</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> The last thing Karen Moorman expected after a Stroke was that the Cryptogenic Stroke Recovery would make her migraine headaches go away for good.

Socials:
https://instagram.com/stroke_sur_vivor/

Highlights:

00:37 Introduction
01:43 Migraine leads to stroke
08:23 Post-stroke deficits
16:31 Stroke recovery mindset
23:45 Social media as catharsis
32:38 Years of debilitating migraines
37:09 Life on Cryptogenic stroke recovery
41:24 Perfectly imperfect
53:10 Dealing with cold temperatures

Transcription:

Karen 0:00
I saw that and I thought that that’s just so fitting for all of the stroke survivors that, you know, we don’t have to be perfect. We can be perfectly imperfect. So yeah, that’s my take on it is you don’t have to be perfect. You know, everyone struggles with something.

Intro 0:24
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

Cryptogenic stroke recovery
Bill 0:37
Bill from recoveryafterstroke.com. This is Episode 139, and my guest today is Karen Moorman. When Karen made a return appointment to the chiropractor to help out with her most recent migraine headache, she never would have guessed that she was not destined to walk out of that appointment on her own free will.

Bill 0:55
Now just before we get started, if you enjoyed the recovery after stroke podcast, and you think that others should hear the amazing stories of these excellent stroke survivors, please tell everybody and anybody that will listen to you about it, and share the podcast link, www.recoveryafterstroke.com on your favorite social media app.

Bill 1:20
Also leave the recovery after stroke podcast, a five-star review on iTunes, or your favorite podcast app. And if you’re watching on YouTube, click the thumbs up button and subscribe to get notified of new episodes. Thank you so much for listening. And now it’s on with the show. Karen Moorman welcome to the podcast.

Karen 1:41
Hi, thank you.

Migraine leads to Cryptogenic stroke

Cryptogenic stroke recovery
Bill 1:42
Thank you for being here. I really appreciate it. You somebody who had a cryptogenic stroke, a stroke, where there doesn’t seem to be an underlying cause. Tell me a little bit about what happened to you.

Karen 1:59
Well, I had a really bad migraine. And then all night, and then I went to go to the chiropractor in the morning because that used to relieve my headaches. And I was sitting in the chiropractor’s office when the girl called me up to go to his room and I didn’t answer her.

Karen 2:18
And then the chiropractor came in and he said you know that I was having a stroke. And they called 911. And I was so fortunate that the ambulance was right outside the door of the chiropractor’s office because they’re going for breakfast. And so I was in for surgery within the first hour.

Bill 2:38
Oh, wow. That’s amazing. Now, you did what I did when I was feeling unwell, left side numbness and all that kind of stuff. I went to my chiropractor as well.

Karen 2:49
Really, yeah that’s crazy.

Bill 2:51
And at the beginning, I didn’t have the symptoms that you had, I had a very different kind of lead up to my brain hemorrhage and the symptoms were just numbness in my leg, and then kind of crept up and then by day seven, the entire left side was numb now I was ignoring all those symptoms the whole time.

Bill 3:11
But eventually when I got there, the chiropractor said you need to go to the hospital because this is not neurological sorry he said this is not your back. It’s neurological. And I argued with him and I went eventually after I argued with my wife and everybody else who told me to go. These headaches that you were getting was there any previous signs that perhaps this was a different headache and looking back now you’re seeing those signs and they’re more obvious than they were at the time?

Karen 3:45
No, not like I had a really sharp like I always suffered from migraines my whole entire life. And but about a month before my stroke happened, I had this migraine that only lasted a few seconds, but it felt like it was from the center of my head coming out my ear.

Karen 4:08
And I went to my doctor the next morning and they said something drastically wrong because it scared the pants off me. And he sent me a whole bunch of tests that all came back fine. And then that night that I had my wicked migraine, that was my only symptom. And then I went in and then they told me I had a stroke and you know, the rest was after that.

Bill 4:40
How old were you?

Karen 4:42
45

Bill 4:44
So last thing you expect to hear from hospital or a doctor or anybody when you’re going in for just a bad migraine or migraine that you’ve had forever and all of a sudden it just feels a bit worse. What do you tell your family? So I was in a situation where I had news to share with them that was pretty dramatic and drastic. How do you break the news? When A you’re suffering B there’s this really serious health issue. And now you got to tell your family.

Karen 5:18
Actually, I couldn’t tell my family because I had no speech after my stroke. So they told me.

Bill 5:30
So were you conscious that your speech was gone? And that you couldn’t communicate? Or were you not conscious of that?

Karen 5:38
No, I was in and out of consciousness in the ambulance. And then I went for surgery right away. And then when I came out of surgery, my husband was standing there, and I couldn’t get any words out. So it’s pretty scary.

Bill 5:56
I can’t imagine what that’s like. I was able to speak and communicate the whole time, I was a bit hazy. And I didn’t really know what was happening. Yeah. But everything that happened to me was planned over a number of years. By the time I had surgery, and by the time I woke up from hospital, I kind of had the whole process planned, but yours was really sudden. And then when you woke up, you weren’t able to speak but what else weren’t you able to do?

Karen 6:20
Well, I kept go at that they were trying to figure out what happened to me. So they kept sending me for all these tests, I was in the hospital for seven or eight days. And my whole time there, I spent getting shuffled between, you know, all these different tests being run on me. And then, my speech started to slowly come back when I was in the hospital. And then they got me up and walking and like, I could walk but, I had right foot drop. So my affected side was my right side.

Bill 7:04
So you had right foot drop. And you were rehabilitated straight after that? Was it around the same time? Or was there a delay between you had the opportunity to sort of get back on your feet?

Karen 7:19
Yeah, they had me up on my feet when I was in the hospital. And then, I got to come home after eight days in the hospital, actually happened right before Christmas. So I got to come home and spend Christmas at home. And I went for physio therapy, speech therapy and occupational therapy, for the next following two months after my stroke.

Bill 7:48
How else did it interfere with your life? Were you somebody that went to work? Did you have a job? Did you do all those things?

Karen 7:54
Yeah, I actually went back to work about six weeks after my stroke, very, very part-time, just to get me out of the house. And I love my job. So it’s a great place to work. And they’re really great with me. So yeah, I was happy to be back there. And I wasn’t back to my position for probably four months.

Cryptogenic stroke recovery deficits

Bill 8:23
How did you find that transition of going back to work? Was it difficult? Fatigue? Was there any issues that you were having to deal with while you’re at work?

Karen 8:32
Yeah, well, my speech was my biggest thing. Because I work for a company that we do all the gym equipment, and my job is I build all the jerseys for all the schools in Western Canada. And I have to talk on the phone, and I have to go into meetings. And so that was my hesitancy was going back full time was that I could never find my right words. So that was my biggest thing. And then my typing my handwriting still have yet to come back, but I can make do.

Bill 9:10
It sounds like the speech has definitely come back and hesitancy around that, how long has it been now since the stroke?

Karen 9:18
It’s just two years in December.

Bill 9:24
So things have progressed quite well. What about physically Where are you at with the foot drop and your ability to walk?

Karen 9:32
My foot drop’s pretty minor now. I don’t have to go to physiotherapy anymore for my foot drop. Um, I walk every day. Except today because it’s snowing totally terribly here right now. But yeah, we walk every day and I work out every morning. And so that helps me. Like I can only do so many laps before my foot drop really kicks in but you Yeah,

Bill 10:01
So the fatigue kind of exaggerates the challenges that you have. That’s pretty standard. That’s what most people describe is that they start off looking or feeling quite, you know, normal, I would say, you know, whatever that word is what baseline and then as the fatigue and the tiredness kicks in and the day wears on, then the symptoms start to become more pronounced and more obvious.

Bill 10:27
And that’s exactly me, I have a left side issue with my foot and my leg. And yesterday, we were at the football, our Australian rules football with four big sticks where they run and hold the ball and kick a ball through the sticks. And it was really, really cold, it was really cold.

Bill 10:51
And when I got up, my left leg was completely just out of action, didn’t want to participate, didn’t want to be part of anything. So I couldn’t feel it the whole time and trying to walk without feeling it is possible. But it’s focus, I have to focus on it, I have to concentrate on it.

Bill 11:08
And that is annoying, because when I’m walking in focusing on just my leg, I can’t really be involved in what’s happening around me. But that’s kind of the extent of it. So your foot drop gets worse. Do you then do you have other symptoms that also get a little bit worse? Is there some challenges that come back that are sort of lingering?

Karen 11:36
I’m not with my like, not with my bottom half of my body, my hand. When I get tired, my printing is atrocious. My typing is atrocious. My handshaking is really bad when I’m trying to eat those kinds of things. It makes it a really fun time.

Bill 11:56
Yeah. And you solve that handshaking problem, though, with a special kind of fork. I noticed on Instagram.

Karen 12:03
Yeah I just bought that and it works a lot better. But still, sometimes I’m still shaking and it’s way heavier. Right? So then it’s really bouncing.

Bill 12:16
You were properly showing off. You were really happy with yourself eating with your book shaking a bit It’s so good to see that such a simple thing can bring back so much happiness or joy. How did it make you feel when you found this fork?

Karen 12:39
Well, it feels really good. Because I mean, not that I’m probably going to be taking my fork with me to a restaurant. Like it’s really embarrassing when you’re standing there and you’re shaking so much trying to get your food in your mouth. So yeah, it’s really a great accomplishment. Right?

Bill 12:55
It is. And it’s such a weird thing, that all that had to do to the fork to make it better for people was making it heavier.

Karen 13:04
Yeah. That’s crazy.

Bill 13:06
Who would have thought that the solution was so simple for a lot of people that’s going to make a massive difference in the quality of their life?

Karen 13:13
Well, I am very challenged with my left hand, I’ve never been able to use my left hand for anything. So that’s why me being a right side effect. It really stinks for me, because like, I do photography too. And, you know, with my right hand to have to use the, for pushing the button for taking pictures, right. And so, it’s really quite challenging with that.

Bill 13:42
Does that make the camera then shake a little bit as you’re about to press it?

Karen 13:47
Yeah.

Bill 13:48
You could create this new genre of photography, call it like out of focus genre.

Karen 13:54
That’s right. Yeah, that’s a great idea.

Bill 13:59
I have a feeling that there are cameras that have a remote control now that you could,

Karen 14:05
yeah, yeah, I can do that, too. I have a studio in our basement that I still use at times. But I don’t do nearly as much photography as I used to do.

Bill 14:17
And is that because of the challenges and the concerns that you have around your hand? And is it the stroke that has led to that?

Karen 14:23
I’m a little bit and the economy in Alberta in Canada, drastically changed probably five years ago with the oil and everything. So I that’s why I went to work about five years ago. So I was still doing photography on the side a little bit, but after my stroke, not so much.

Bill 14:46
Yeah. I also see that on your Instagram, which for people who are curious to connect with you, Karen. I’ll have the link in the show notes. They’ll be able to find that and connect with you. Your Instagram here. lucid stroke underscore ser su r underscore Viber.

Bill 15:05
You also have a post there that says, stroke recovery life is not for sissies hashtag warriors. I love that it’s kind of a different way to look at it. You don’t look like you’re a sissy previously, it looks like you’ve just taken this on the chin so to speak, and you’ve become somebody who has problems to solve, and you’re just trying to find ways to solve them. Is that the kind of person you always were? And have you applied those skills to this recovery? How have you approached the recovery?

Karen 15:41
Yeah, I think that’s exactly how I was before. And I’ve never had one day where I’ve gone why me? I’ve just gone What can I do to make this better? So yeah. I always take things I don’t know how to say that. Sorry I never take anything too. Seriously. Like, everything. I just let everything roll, you know?

Stroke recovery mindset

Cryptogenic stroke recovery
Bill 16:31
Is it because your, your mindset is about problem-solving? It’s not about the problem. It’s about the solutions to the problem. Does that accurately describe it?

Karen 16:42
Yeah, that’s right. Yeah. And when I was in the hospital, and I wasn’t speaking, I knew that I would speak I knew that I will walk again. I don’t know why I knew that. Because then I, I didn’t know anybody who had ever had a stroke before. I just assumed that I would be totally fine.

Bill 17:01
Yeah, sometimes that type of assumption could be good because it could just open the path for things to come into your goal to allow you to get better. And thankfully, it all lined up for you that the stroke wasn’t, well, it’s always a serious thing. But it wasn’t that dramatic in that you didn’t end up in locked-in syndrome, you didn’t have all those other things you just rolled with it and whatever came, came.

Bill 17:26
If it was more serious. And I know this is hypothetical and difficult. Do you think it could have shaken your core? You the core person that you are the one that doesn’t sit in the problem doesn’t say why me? If it was worse, do you think it might have been able to shake up that old version of you?

Karen 17:46
Might have Yeah, I’m hard to say because it didn’t happen to me. But, you know, we’ve had a lot of other medical things in our family. And, you know, we all just roll with it.

Bill 18:02
That’s really helpful. that’s similar to me, I didn’t really worry about future strikes. Although I had three brain hemorrhages over three years, I didn’t really worry about them, but I prepared for them. In that I did what I could to make myself as healthy as possible.

Bill 18:18
So if it did happen, again, I didn’t have so far to come to be healthy. And then to heal my brain, I was kind of already in the zone of being really well and therefore, hopefully, minimize the negative side of another bleed. Start from a bit of baseline. And then it happened again, and then it happened again. And then I had brain surgery. And then I had to learn how to walk again and use my arm again, and all that type of thing.

Bill 18:49
I just felt like the only part of the process that I could control was what I did to myself how I managed I my body and also my mindset, are you the kind of person that actively looks at ways of quote unquote, remaining healthy and eating well, and doing all those types of things?

Karen 19:07
Yeah, I mean, like, I was saying, I there was no reason for my stroke. I never have smoked, I never really drink. I’m not overweight, you know, I didn’t have any heart issues, nothing like that. We eat really healthy. So you know, I think that I was doing everything right before so I just carried on with it.

Bill 19:32
Yeah. Well, that is really bizarre and strange and you’re not in the risk category. If you went and did a health check the day before. They would have said you would have had a clean bill of health everything would have been perfectly fine.

Karen 19:45
Yeah. The neurologists kept asking me if I did judo or lacrosse but no.

Bill 19:54
In case that somehow impacted.

Karen 19:57
Yeah, I don’t know. Yeah.

Bill 19:58
Okay. So you got hit on something.

Karen 20:01
Yeah, that’s what he kept thinking was I got hit, but I didn’t.

Bill 20:08
I know you have a family. You have kids? How many kids are there?

Karen 20:13
I have two children. I have a 22-year-old and a 20-year-old.

Bill 20:18
And how do you tell them? How do you have that conversation with them about what’s happened to you? And how do they deal with it?

Karen 20:25
Well, my son was living elsewhere. And he was coming home for Christmas. So my husband broke the news to him. And, you know, they were both quite concerned about me, but they both been super great with helping me my son’s actually, he’s a personal trainer. So he helps me with all my training and everything. And my daughter’s always in there with me working out.

Bill 20:50
Yeah, Sounds like they’re a good bunch of kids to have around as well as they are knowledgeable about what they can do to actually help.

Karen 21:00
That’s right. Yeah, they both are. Yeah.

Bill 21:02
That’s brilliant. How did your husband handle the whole thing?

Karen 21:06
I think my husband took it the worst. Because, like, he said, I’m the rock of the family. Because I’m the one who, you know, knew what was happening within the family. I was the one who kept the calendar. And then when I had my stroke, he’s like, I don’t know how to pay the bills. I don’t know how to do anything, because he never had to. So yeah, he took it probably the worst, but he’s recovered quite well.

Bill 21:34
Has he stepped up?

Karen 21:35
Yeah, he did. He stepped up big time.

Bill 21:38
Does he know how to pay a Bill now?

Karen 21:41
Actually, yes, he does.

Bill 21:43
I know we’re joking about him. And hopefully, if he listens to this, he doesn’t feel like we’re being too nasty. But that is quite common, that whole thing that we have roles within our family, we do certain things that the other person just because we do that thing doesn’t need to do it.

Bill 22:03
And it never gets discussed, and we never cross boundaries, and people don’t do each other’s tasks. So it becomes a real problem. So imagine the biggest problem for your husband being as well as dealing with your wife and who’s unwell. And what does that all look like in mean for the future and all that kind of thing? Imagine the other biggest problem being the electricity might get turned off because I don’t know how to pay the bill.

Karen 22:33
Yeah, that was pretty funny, because he was trying to cancel some appointments for me, and he didn’t know how to phone anybody. And so yeah, he may do very well, though. He enlisted my daughter to help them. Actually, it’s like the password thing. You know, how you always have a million passwords?

Bill 22:57
Yeah.

Karen 22:57
I had all the passwords in my brain. Right. So they were never written down anywhere. So now we have all written down.

Bill 23:05
Yeah, the password thing is real difficult one. My wife and I had that conversation just a few days ago, she said, I don’t know the password to your computer. There’s a bank account. There’s this, there’s that? And I’m like, yeah. And she said, What if we needed one day, you know, God forbid, all that kind of stuff. And I said, Okay, so I think I need to contact the bank and get them to put you on to this particular account.

Bill 23:27
And I need to do this, and I need to do that. And I think that’s a good idea. Because if we don’t do it, if I don’t do it, it creates a real struggle of getting information out of things that could possibly be useful for all sorts of situations, doctors and legal matters.

Social media as catharsis

Bill 23:44
And yeah, maybe something worth considering. For the people who are listening and watching this. Why did you decide to start creating posts on your Instagram that was stroke-related? What are you getting out of posting about this part of your life, this recovery stage?

Karen 24:10
I think it helps me because I’m, like, I was telling you, I didn’t know anybody who’d ever had a stroke before. I didn’t know any of the symptoms of a stroke. You know, I didn’t know any of the recovery processes of a stroke. And after having my stroke, I stayed silent for a long time. Because I was just, you know, getting used to it. All right. And then I decided just a few months ago that I was going to start posting. And yeah, I really like it now, because I think it helps me I think it would help other people.

Bill 24:48
Yeah, it’s a selfish thing. Initially, you do it and you think I’m going to get something out of this and you do, but then you realize there’s a massive loop that happens is other people get a lot out of it. And then it Just create this amazing loop of I’m benefiting from doing this. And so is the other person reading this, and therefore, they’re doing this because I benefit and they keep benefiting.

Bill 25:10
And that’s how I got stuck in this loop of almost 140 episodes of the podcast because I get so much out of it, each interaction with everybody. And they get so much out of it. And then the people listening, get so much out of it. And they respond to me, and they tell me how much they loved a particular episode. And it’s almost impossible to stop.

Karen 25:33
That’s right.

Bill 25:35
And all the people that I interviewed have had a stroke, something really serious has happened to them in their life. They’re struggling a lot of them a lot more than what I might be, or you might be but we’re all thinking about other people as well as themselves.

Bill 25:49
And it’s really strange. I never expected to see that in so many people that they come on the podcast, often to share their story. And also, maybe it will make somebody else feel better. And that is really bizarre to me that maybe it’ll make somebody else feel better. How do you get to that stage, though? Like, why is it so important that other people are also going to be okay, going through something similar to what you’re going through?

Karen 26:23
Yeah, I mean, I’m not really sure how to answer that. Yeah, sorry, I don’t really know how to answer it.

Bill 26:32
That’s okay. I don’t expect you to 100% have an answer to it. But it’s kind of a question that I’m putting out there. I’m somehow, that stimulates something that makes me get an answer to that as well. I didn’t really have the answer to it either but it’s really strange that we’re in that position. So I love it it’s a good thing.

Karen 26:54
I think it’s a great thing. Yeah.

Bill 26:57
So what are your plans? Are your forward thinker? Are you looking into the future about how you’d like things to progress from here?

Karen 27:08
With my stroke, recovering?

Bill 27:09
Yeah, with all things?

Karen 27:12
Yeah, I am a planner. But we like to travel. And obviously, right now, no one’s traveling. But, you know, we love to travel. And that’s my husband’s looking at his retirement soon. And, you know, so we’re looking at that forward thinking, right, looking towards the happiness of getting to be out there in the world and checking things out.

Bill 27:44
Okay. And COVID has interrupted all of that, of course, for everybody, and everyone. So it’s a little bit further away than it was perhaps, before 2019 it happened? Or 2020 really, actually happened. So it has COVID interrupted your recovery in any way. Did you struggle to access services in those days?

Karen 28:13
No, the only I was going to a hand physiotherapist. And that was the only thing that got stuck on me with the COVID thing. But yeah, all my appointments were pretty much done. And I’ve been doing all my doctor’s appointments over the phone. So I mean, it hasn’t really affected me, I know, other people right now.

Karen 28:36
Like my husband was saying, it’s so lucky that I had my stroke when I did. Because I think that if it had happened during COVID, it would have been so much harder to access everything and to be in the hospital. And you know.

Bill 28:51
It sounds like luck has gone your way a few times. And I’m not sure that there’s luck in a stroke. Exactly. But you were at the chiropractor at the right time the ambulance was there at the right time.

Karen 29:06
Yeah.

Bill 29:08
Did you ever think about that? Does that ever play on your mind?

Karen 29:13
Yeah, I truly believe in luck, because I am super thankful that I’m still here. And that the ambulance drivers were in the right place at the right time that you know, that I had made it to the chiropractor’s office because, like I had just walked in the door and I just sat down. I had been driving, you know, 15 minutes over to the chiropractor’s office at seven o’clock in the morning.

Bill 29:40
It could’ve ended a lot worse.

Karen 29:43
That’s right. And my husband was working so I would have I could have fallen at home. You know what I mean? I would have been all by myself. So, you know, the endless things that go through my mind but you think what if what if, what if, but I’m just super thankful and lucky that everything happened the way did.

Bill 30:02
Have you put any thought into your mortality? If this is a difficult question, and you can’t answer it, that’s fine. I started doing that I thought about I might not be here and it just put some things in place and set some things straight. Have you done any of that kind of work? Did you find yourself in that space at all?

Karen 30:20
Not really. No my daughter was always mentioned that, you know, she is super thankful that I’m still here. And the what ifs? Because she’s that kind of kid that she’s always worried about everybody. Right? But no, I, that’s not my thinking typically,

Bill 30:40
It’s not your thing?

Karen 30:41
No.

Bill 30:42
Yeah. I love it, you are actually quite different than a lot of the other stroke survivors, because I feel like what stroke does is it enhances for most people our worst traits in that if we’ve got stuff that’s left over from a lifetime of trauma, or suffering, or emotional distress, or whatever, you have a stroke, and then that just makes it 10 times worse.

Bill 31:11
I went through a little bit of those things becoming a little worse. But I was always on the path of self development and learning about myself and being a better version of myself and all that kind of stuff. So I quickly realized the things that I had to remedy and the and the few things I had to remedy. Were not about me, per se, they were about how I interacted with certain people, my family, the people, I loved that type of thing.

Bill 31:37
So I went about going out of my way to remedy that apologizing when I was being an idiot, which was regular. And just letting people know how I felt about them. And just making sure that I gave people the opportunity to express themselves around me and tell me what I needed to do. So to speak to fix things.

Karen 31:59
Yeah.

Bill 32:02
You’re I’m sensing you’re just a really laid back chilled out kind of person anyway. So you don’t have a lot of that stuff. Is it accurate? Does it feel like it didn’t bring with you a lot of stuff from your past that has exacerbated been exacerbated because of the stroke?

Karen 32:22
No, no. I don’t feel like I did.

Bill 32:26
What do you put that down to? Can you explain why you’re not that kind of person who carries that type of stuff with you into the future?

Years of debilitating migraines

Karen 32:38
No I can’t really explain it. The only thing that I’m really grateful for is, like I was saying earlier, I used to have these bad migraines my entire life. Since I was 16. I had these horrible migraines from a car accident I was in.

Karen 32:59
And now I hardly ever get them. And I used to get them like daily, I would have like, for 25 years I had these wicked migraines almost every day. And I hardly have them anymore. So I think I’m just super grateful. And that I can think without my brain hurting every day.

Karen 33:23
That you know. So I don’t have that pain of my head hurting every day. I do still get like little migraines, but they’re not anything. They’re not the same. They’re like little sharp, zapping kind of migraines now. Like it used to consume my whole head like I would I couldn’t see anything, I’d have to be in a dark room. I’d have to you know, sometimes they’d even lose my hearing on one side.

Bill 33:54
That it would be difficult living the life under those conditions. But somehow you’ve managed to do all of that raise a family, work, be a full time human and live with this condition. And did it get you down? Did it make you feel?

Karen 34:14
Oh yeah, it was terrible. Because every day My head hurts. And you can only take so much medicine before your gut starts hurting and then it you know, it messes with other things right?

Karen 34:25
So yeah, every day for that many years was so daunting on me that now I’m headache free and happy. And all you needed to do was have a stroke to get rid of it. That’s right. And that’s why I’m actually kind of happy I had my stroke because I’m living a life now. Instead of hiding out my bedroom in a black room, right.

Bill 34:50
Wow, that is just intensely nuts. That is such a good thing. It’s so bizarre. You’ve rewritten the book, let me tell you on most things like in our discussion, we’ve only been talking for about 30 minutes or so you’ve just flipped everything upside down and have this outcome from a stroke is just amazing.

Bill 35:16
And ridiculous and great. You know, when you were living with this headache, and you were interacting with people all the time, did they know that you were experiencing this headache from your migraines all the time? Or were they oblivious to you? Because you were really good at hiding it?

Karen 35:36
Yep, I was pretty good at hiding it. I mean, some days, there was no hiding it. Because, you know, I couldn’t see anything or I couldn’t be in a room with people, you know what I mean? But nope, I was pretty good at hiding.

Bill 35:51
Yeah. And that is similar to you know, what’s interesting is you’ve kind of had that similar experience, the stroke survivors get you had it because of migraines. But a lot of stroke survivors have headaches as a result of their brain surgery or the stroke you had?

Bill 36:10
And externally, they look all, you know, quote, unquote, normal. And there’s the invisible side of the disability that people don’t pick up on, and they can’t possibly understand. Did you have that experience that invisible disability kind of experience, although it wasn’t, per se a disability in the explanation? It kind of was because it’s stopping you from living your fullest.

Karen 36:40
That’s right. For sure it was.

Bill 36:44
Did people misunderstand you and judge you because you had a headache again?

Karen 36:49
Yep. Like my family said, Oh, you have another migraine? Oh, you know.

Bill 36:58
You kind of had all of the stuff that stroke survivors experienced before you strike. You’ve done everything backwards. And now it’s gone because of the stroke.

Karen 37:05
That’s right. Yeah, I’m backwards.

Life after having Cryptogenic stroke

Cryptogenic stroke recovery
Bill 37:09
Wow. That’s good. That’s really good. And, and now, you can go about having this different kind of experience in your life, a different kind of clarity about your head? How has that changed your life? What do you see now that you couldn’t see before? Or how has it impacted your life in a positive way?

Karen 37:30
Well, I can be out in the world and not have my head hurting. It feels great. And yeah, I mean, it’s totally changed my life, though. To think having a stroke has changed my life for the better. seems really weird to say, but that’s what I always say.

Bill 37:54
A lot of people say that even people living with quite serious disabilities, they’ll say the stroke was the best thing that happened to them. Of course, at the time, it’s the scariest. It’s one of the worst things it’s one of the hardest things, but after some time elapses, and they go on some kind of a path of self discovery and healing and learning about you know, how to support themselves and overcome challenges and how tough they really are.

Bill 38:22
They’re not sissies you know, they’re stroke survivors like you say they kind of reflect and some times it just it just enters their mind that oh my gosh, the stroke was one of the best things that happened to me because it led to all these other things occurring.

Bill 38:41
And it sounds like you’re got there a lot quicker than most stroke survivors, but it definitely has led to you discovering parts of yourself that you didn’t know were impossible. Painkillers, paracetamol, any of that stuff did it ever ease the headache symptoms? Did it ever give you some kind of ability to get back to your day and feel okay?

Karen 39:11
No, I mean, I lived on Advil, Tylenol, Tylenol twos, like everything. I would take Imitrex I took all the migraine medicines. They might help for a day or two, but they never cured it.

Bill 39:31
And now, are you taking those medications at all with those little ones that you experience?

Karen 39:35
No.

Bill 39:37
That’s fantastic. And just your pocket as well. You probably gonna have more money left in your pocket.

Karen 39:44
That’s right. Yeah.

Bill 39:47
It’s like a smoker who stopped smoking and all of a sudden they have all this spare cash.

Karen 39:51
That’s right. That’s what we’re traveling on. All my headache medicines we’re going to be traveling on.

Bill 39:59
Sounds brilliant, that is so heartwarming to hear. The other thing that you posted about one day was and I love the words that you use in your posts, one of them is perfectly imperfect. And I think that’s a really important thing. What does that mean for you perfectly imperfect?

Intro 40:21
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things.

Intro 40:40
But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

Intro 41:05
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recovery after stroke, calm and download the guide. It’s free.

Perfectly imperfect


Karen 41:24
I saw that. And I thought that that’s just so fitting for all of the stroke survivors that, you know, we don’t have to be perfect. We can be perfectly imperfect. So yeah, that’s my take on it is you don’t have to be perfect. You know, everyone struggles with something.

Bill 41:48
Be okay with it be okay with not being perfect or normal, or whatever the word is that you use that limits you from getting further along in your journey, because aiming for perfection, I reckon closes the window on other possibilities that we’re not seeing, because we’re trying to get to this one point.

Karen 42:10
Yeah, that’s right.

Bill 42:12
Yeah, I agree with that one, perfectly imperfect. And even before the stroke we’re nowhere near perfect. We were just, I don’t know, stumbling towards some kind of strange version of perfection that we were never going to get to anyway.

Bill 42:26
And now, if that’s the one thing that’s occupying your mind of getting back to where you were beforehand, maybe you just need to let go of that and just live the moment that you’re in and experience what you’re experiencing. Because there’s a real richness in your current experience.

Bill 42:44
Even if it’s a shit one, pardon my French, it’s still a lot of richness there, there is still something you can gain from it. And the way that I extract a good thing out of a really bad time, is by asking if, and by trying to trick myself sometimes in saying stuff. Like, if it was possible for something to good to come out of this situation. If it was possible, what might it be?

Bill 43:14
And that automatically trains the mind to say, Okay, well, I’m experiencing pain and suffering and all this type of thing. But a lovely person came up to me and said, Hello, and spoke to me. And that’s a good thing that came out of that painful situation. The other thing that you did really well was you explain this thing that I can’t explain to people.

Bill 43:34
So my left leg, it becomes really stiff and numb, and it then starts to hurt. And this is where I contacted you because you posted a post, which says my legs are hungover. And that, to me was I never had the words that describes my legs. How did you get to that? Or did you find that somewhere else in Pinterest?

Karen 44:01
Yeah, I think it’s on Pinterest. But yeah, I found that and I thought that was so fitting because, you know, we had walked along that day, and we had bike ride and yeah, my legs were totally done. My right leg was totally done that night. I wish I would put my leg is hung over but those legs.

Bill 44:21
I knew exactly what you meant, though. Like, I totally understood that when you’re riding a bike, is it easier to keep the effected leg on the pedal? Because I really struggled with that for a long time.

Karen 44:31
Yeah, I really struggled with that. In the beginning my husband kept saying to me that I was just using my toes to pedal my bike on my right side. And but this year, I’ve only been bike riding a few times because we just lost our snow but we’ve just gained it all back today but yeah.

Karen 44:55
The bike rides that have gone on this year. I can place my foot on the pedal properly.

Bill 45:04
And how quickly does your leg get tired? Because what I noticed about my leg was I might start off the first few minutes or fine, even 10 minutes. And then if I do one, even just a minor incline or a small hill, then it gets really tired. And then my right leg is out of the picture. My left leg is out of the picture. And my right leg is trying to do more work to keep it going.

Karen 45:31
That’s right. Yeah, that’s me, too.

Bill 45:32
Yeah, I solved that problem with at the beginning with a stirrup before my left foot. So, you know, the pedals have they have straps to hold fit in for bike riders who are more serious than us. And I used to put my foot in the stirrup and then forget that it was in the stirrup, and then go to try and put my foot down.

Bill 45:54
And of course, I couldn’t get it out quick enough. And I’d fall over. And that was really challenging. Because I was trying to solve the problem of my foot not staying on the pedal, and I solved that problem. And then I created another problem. And I got sick of it. And I gave the bike away for a little while, I stopped riding. And then somebody said to me, have you ever tried an electric bike?

Bill 46:16
And I always thought that was a bit weird on No, I don’t know what they do. Like, I don’t get it. And I went and tried one. And what I realized was the electric bike in those first early parts of the of the pedaling process. So in the first, I’d say, the hardest part of the pedal. In the hardest part, it assists you with the electric motor. And you don’t feel that strain, and therefore my leg doesn’t get fatigued. And I can ride for an hour or more, and I just come back and everything is okay.

Karen 46:51
That’s right. So my husband, we were in Hawaii a year, just over a year ago. And we rented electric bikes. And it totally impressed my husband so much that he’s buying us electric bikes. Well, at least me so then I can keep up with him. Because he always does like a nine or 10-kilometer bike ride every morning. Yes. And there’s no way I can keep up with him. But if I had my electric bike, then I could.

Bill 47:18
Yeah, so ours are pre-programed to support you up to 25 kilometers an hour, and then the electric motor switches off. But which by then you’re cruising along. And it’s really a comfortable sort of speed to be riding, it’s not too fast, and it’s not too slow. And then as you get a little bit fatigued or tired, and you drop under 25 kilometers, it kicks in again.

Bill 47:43
So you don’t really need to actually put a lot of effort into staying at 25 kilometres an hour. So I rediscovered my love of bike riding with that electric bike, and it can do up to up to about 100 kilometres, or if I put it on the very high level of support or help or whatever they call it, it does maybe 30 or 40 kilometres, which is way more than I’ll do on a single day.

Bill 48:12
And I just crank it up to the full level of support so that I don’t have to get tired at all really? So you’re going to love that when you get it. And that’s going to mean that you’re going to be able to put your foot on the pedal better it’ll be much easier. Now for people listening who might have given up bike riding, for whatever reason, say that you can’t balance on a bike on two wheels.

Bill 48:36
And maybe if you get a three wheeled bike with two wheels at the back, one of the fun and you can get an electric motor that will really help. But also, I think they’re available on those bikes where people lie down. And they sit in a seat and they look like they’re almost lying down. You can get it in those bikes as well. So what I find is that, although I can drive, it gives me a sense of independence. That’s a little different from getting in a car. It’s more freeing. It’s a more spiritual independence.

Karen 49:06
Yeah. That’s awesome.

Bill 49:11
Were you not able to drive for a while? And how did you experience that? How did you feel about that?

Karen 49:18
Well, I don’t know what it’s like in other countries, but in Canada, automatically when you have a stroke, you lose your license for a month minimum. And so I got my car after my one month to the day and I said to my husband and my allowed to drive like I was so nervous. And my husband’s like yes, you’re allowed to drive. Just get in the car and drive so I drove around our area and yeah, you just pick it up like no problem but it was really nerve racking for the first little Little bit but no problems after that.

Bill 50:03
How about the right foot on the pedal? Were you able to get back to being able to work out how much pressure to put on?

Karen 50:10
Yeah. I don’t know what it’s called. But my right three toes are I think it’s called spasticity or? So that was my big struggle, in the beginning, was how to put my toes onto the pedal. So I actually use my cruise control quite a bit in the very beginning, because my toes kept cramping up, and then my foot would cramp up, and then you know, I’d have to stop my car and get out because I have to put my foot flat to get the crap out. So yeah, that was probably my biggest hurdle with driving.

Bill 50:56
Well, you’ve come such a long way, you’ve actually had a fair amount to overcome. We make it sound like you got there really easily. But I can’t imagine that this was all just as breezy as you make it sound.

Karen 51:13
Yeah, it’s not as breezy. But it was pretty. Like I look at other people’s Instagram stories, and I think I have it so much easier. I have nothing to complain about.

Bill 51:24
So you’re in which part of Canada?

Karen 51:30
Alberta

Bill 51:32
Is at the top?

Karen 51:35
So Canada goes like this. And we’re over the next province over to BC. British Columbia, Vancouver. So we’re in Edmonton.

Bill 51:47
Is that near the border of the United States?

Karen 51:50
No, we’re North probably about seven hours from the border.

Bill 51:59
How does the weather impact your stroke in any way? Does the cold bother you and annoy you?

Karen 52:09
Yeah, that creates some fun times. Because it’s, I mean, it’s beautiful it’s cold. Some days. We didn’t have that much cold weather. This winter. We had a really nice winter this year. We had only a couple of days of 40 below, which is totally fine with me if it’s only a few days.

Karen 52:37
But yeah, it’s been a great winter. We’ve had we’re heading into our spring like this is actually spring now but yeah, we still get snow and probably till May. We’ll have on and off snowstorms. We were outside in the yard today. We were raking it up. It was beautiful all day today.

Bill 53:01
How much snow?

Karen 53:02
So probably three inches out there.

Dealing with cold temperatures

Bill 53:10
Yeah. That’s a fair bit. And does that impact the stroke recovery? Does that make you feel colder on one side or the other side?

Karen 53:19
Oh, yeah, for sure. My right side for my first winter after my stroke. I was under like four blankets every day, because I just couldn’t warm up and my right foot would freeze instantly. So and my right hands. So yeah, it definitely impacts that. I don’t know if it’s like that for you. Was it?

Bill 53:44
That is very common that one side of the body is colder than the other for a lot of strokes. If I was I’m not sure why that is. But it’s so common. Here we don’t get to minus 40 which is four degrees Celsius that often where I live in Melbourne. We do get Arctic winds coming up from the South Pole.

Bill 54:08
And our weather is we’re kind of stuck in between the desert of the majority of our country, which if there’s a northerly wind brings hot temperatures and hot conditions. But then in winter when things switch around, we get the subtleties and those subtleties are ice cold I imagine it’s similar to what you guys feel from the North Pole, right?

Bill 54:34
And I can tell you that I can be like you under every kind of blanket is so warm and then feel the chill still penetrating all those layers and getting to my skin and somehow making that part of my body feel freezing. And you can actually measure the difference in the temperature with a thermometer on one side of my body to the other.

Bill 55:01
And it’s usually a couple of degrees lower or one and a bit degrees. So it’s very common. And I never really liked the cold. And I love summer. And I don’t know how anyone lives in a part of the world where it snows, I don’t know how they do it all power to you guys, but I can ever imagine myself doing it. And my wife made me go. And I say made me go, we traveled to New York for new years in 2012, 2013.

Bill 55:38
And it was around 40 below every day. It was around 40 Fahrenheit every day. So it was about Okay, so we’re Celsius.

Karen 55:50
So 40 below is like

Bill 55:53
40 Fahrenheit

Karen 55:54
40 below is like 40 below Celsius.

Bill 55:58
Oh, oh, not zero, not near zero degrees Celsius.

Karen 56:03
No. 40 below.

Bill 56:06
And you think that’s okay for a few days? So 40 below minus 40 Fahrenheit?

Karen 56:15
Celsius, 40 below Celsius and 40 below Fahrenheit would be about the same. Here it is right here. Yeah, 40 degrees below zero is 40 degrees Celsius and Fahrenheit is exactly the same.

Bill 56:37
So we’re talking about freezing.

Karen 56:39
The freezing point is zero degrees Celsius means 32. Fahrenheit. Is our freezing.

Bill 56:49
Okay? So are you talking below 32 Fahrenheit.

Karen 56:56
I’m talking 40 degrees below.

Bill 57:03
Oh, my gosh.

Karen 57:04
And we used to live nine hours north of here. And if we get to 50 below. And one day, it was like 52 below zero. And I said to my husband, it’s time to move. I’m done with this. We need to move we moved down here. And it’s way better here.

Bill 57:26
We need to move to a warmer climate where it only gets to 40 below. Everything is relative that is absolutely crazy. I cannot imagine. I don’t know why people do. But isn’t that amazing how it’s a great example of how humans can adapt to anything. And if you can adapt to those types of temperature decreases, then you can adapt to anything and stroke should be one of those things that we can somehow find a way to adapt to we’ve got no other choice. So we’ve got to just adopt to it.

Karen 58:01
My mum and I moved from Vancouver BC. Have you ever checked out the weather in Vancouver? It’s quite rainy. And it’s just north of Seattle. So it’s kind of that wet, rainy, it hardly ever gets below zero there. It’s you know, it’s pretty mild. And my mom and I moved to Fort St. JOHN BC, which is I think it’s 18 hours north of Vancouver.

Karen 58:32
And our first winter there. My mom said that’s it, we’re moving because all the windows froze up. Like we had thick ice on every window. And it felt like it was 40 below in our house. But my mom had turned up the humidifier. So we ended up staying but.

Karen 59:02
So, yeah, we’ve learned a few rules of the way right so.

Bill 59:06
Yeah, good on you. I don’t know. How you do it, have you ever dreamt up? I’m gonna go to Miami, Florida and spend a year there one day?

Karen 59:16
No. I would like to probably go if I’m dreaming of somewhere probably be Hawaii. We love going to Hawaii. We’ve been there many times now. That would be my dream location to live.

Bill 59:28
Yeah, I’ve been to Hawaii. And the temperature there was amazing. It was pretty consistent. And from what I hear doesn’t fluctuate a lot, does it?

Karen 59:34
That’s right. Yeah. It’s awesome.

Bill 59:36
Yeah. Okay. So somebody like you that comes from such a cold climate could really settle into something like.

Karen 59:43
Oh, I could totally leave the cold weather in the dust. No problem.

Bill 59:49
All right. I’m glad to hear it. I’m glad to hear I didn’t want you to be one of those crazy people who loves the cold.

Karen 59:55
No, I don’t love the cold but I can live with it. Right? And you know, it makes you appreciate the warmer days because we’ve had this great winter here. And, you know, I have this lady at work, who loves to complain about everything. She’s like, Oh, it’s so cold and like, it’s a really beautiful day. It’s up 50 below. So you know it’s great.

Bill 1:00:19
Sounds like she’s living in the wrong part of the world.

Karen 1:00:22
That’s Yeah, I think she’d probably be one to live in Miami, right?

Bill 1:00:26
So about three-hour plane flight north from where I live. So around 3 and a half thousand kilometers from where I live is the Gold Coast, the Sunshine Coast is the Queensland and it’s where all the Victorians and Melburnians leave in winter to go to to get away from the cold weather.

Bill 1:00:52
I could really see myself just finding a little shack somewhere near a beach over there and just plunking my butt there and being there for the rest of my life like quite happily because it gets warm, but it never gets below about 20 degrees Celsius. And when it does get below that it’s quite cold for them. They whinge about it. But in Melbourne, 20 degrees Celsius in winter would be just unbelievable that would be amazing.

Bill 1:01:19
And I remember traveling there one year, and it was winter in Melbourne and I went up for a conference. And while I was there, it was about 22 degrees Celsius. And I took I was in shorts and a T shirt and flip flops and everything was amazing. And this guy walks past me with a jacket and a scarf. It was cold. And I was in shorts. And I was looking at him thinking, what are you doing? Like, why are you wearing a scarf? It’s 20 degrees Celsius, the sun is out. It’s a completely amazing day.

Karen 1:01:54
We went down to Los Angeles to Disneyland when our kids were young. And the day we got there, our kids are, you know, in their shorts and tank tops. And it was like, I don’t know, maybe April, we were looking at these people that were from LA. They’re wearing a winter coats.

Karen 1:02:19
And we’re like, why are you wearing your winter coat? Like, this is so stupid because it was so beautiful. They’re like, Oh, this is so cold. We’re like, we just left 40 below like we’re wearing shorts and T shirts and tank tops and sandals. And that’s all we took. Right? So it’s really funny.

Bill 1:02:39
That’s fair enough. Yeah. I really appreciate you connecting with me and agreeing to be on the podcast.

Karen 1:02:46
No problem.

Bill 1:02:47
It’s really lovely to hear your story and how some strange thing called the cryptogenic stroke has created a few problems for you but solved some other ones for you. That is rare and wonderful to hear about. And I wish you all the best and I hope everything goes really well for you in your recovery. From here on.

Karen 1:03:09
Thank you very much.

Intro 1:03:15
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individuals own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:03:42
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 1:04:05
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:04:20
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Intro 1:04:44
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The last thing Karen Moorman expected after a Stroke was that the Cryptogenic Stroke Recovery would make her migraine headaches go away for good. The last thing Karen Moorman expected after a Stroke was that the Cryptogenic Stroke Recovery would make her migraine headaches go away for good. Recovery After Stroke 1:05:11
138. Anxiety After Stroke – Kent Bragg https://recoveryafterstroke.com/anxiety-after-stroke/ Mon, 05 Apr 2021 13:45:58 +0000 https://recoveryafterstroke.com/?p=5988 https://recoveryafterstroke.com/anxiety-after-stroke/#respond https://recoveryafterstroke.com/anxiety-after-stroke/feed/ 0 <p>Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/anxiety-after-stroke/">138. Anxiety After Stroke – Kent Bragg</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life

Socials:
www.facebook.com/kent.bragg.14

Highlights:

01:10 Introduction
02:23 Before the stroke and anxiety
12:52 How to get home
18:47 Post-stroke deficits
24:48 Expect the best, prepare for the worst
29:29 Dealing with Anxiety after stroke
39:29 Seeking help
44:08 Three elements to recovery
50:48 Helping others after stroke
1:00:00 Being a stroke survivor

Transcription:

Kent 0:00
But I have a question for you Bill because you had the reoccurrence of the brain bleeding like what’s been told to you what could you give feedback to somebody like me and say this is what they told me this is what to avoid is there anything?

Bill 0:21
I’m kind of the guy, I love the motto expect the best prepare for the worst and i’m just preparing the whole time for the worst-case scenario so I went through that process of changing my diet, of course, stop smoking stop drinking i wasn’t exercising because i couldn’t exercise and then when it happened again basically I was the fittest healthiest best version of myself when I went into surgery I was able to I said to the doctors be the best patient they’ve ever had.

Intro 0:58
This is The Recovery After Stroke Podcast with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

Anxiety After Stroke
Bill 1:10
Bill from recoveryafterstroke.com this is episode 138 and my guest today is Kent Bragg. Kent was chillaxing on his hotel bed naked when he experienced the strange symptoms in his head and when he tried to stand up he collapsed to the floor with his left side paralyzed due to a brain hemorrhage.

Bill 1:33
You’ve got to listen to this episode to see how it turned out for Kent it’s pretty funny and serious at the same time now if you enjoy the recovery after stroke podcast and you think that others should hear the amazing stories of these excellent stroke survivors please tell others about the podcast and share it on your favorite social media app.

Bill 1:56
Also leave the recovery after stroke podcast a five star review on itunes or your favorite podcast app and if you’re watching on youtube click the thumbs up button and subscribe to get notified of new episodes thanks so much for listening and now it’s on with the show. Kent Bragg welcome to the podcast.

Kent 2:17
Excellent thanks Bill.

Bill 2:19
Hey tell us a little bit about what happened to you Kent.

Before the stroke and anxiety


Kent 2:23
So 2020 I had a pretty unusual year in addition to the pandemic that everyone else experienced and the lockdowns and shutdowns I was working out in California I’m from Ohio and i had my own I was self-employed at a construction management company and i was working out in california in January i went out to California for a couple months just to get some work in and head back home.

Kent 2:51
But while i’m there i’m working for a small automotive company maybe you’ve heard of named built electric cars Tesla but I’m out there and yeah so excellent experience my wife flies out for valentine’s weekend you know it’s it’s a great overall experience pandemic hits and so we get through the pandemic I come home and the company called me and said hey Kent you’re one of the few people that’s willing to keep traveling during the pandemic which was already stressful enough and you’re trying to balance whether it’s the right decisions but you still want to make an income for the family and keep everything in balance.

Kent 3:32
So I took an assignment to go to Hermosillo mexico on a foreign project and I got to Mexico and things went well before we had to go to Mexico we had to get a full physical as part of the package my vitals checked out well I was the kind of guy that like I was 49 I was an ex-military veteran like in shape and no issues like no health issues at all.

Kent 4:00
So we’re really only worried about COVID nothing else there’s no other like health concerns or reasons to be scared as soon as i get down there we become more isolated from the us border they create some closures across the border they classified us as essential workers i’m not too sure how essential we were we’re automotive trying to keep the economy moving for nothing else right so get down there working hard the motto we developed Bill was let’s work hard and get out of here.

Kent 4:40
And so we kept the pedal to the metal it was about 115 degrees felt fahrenheit every day 45c all the time and on august 14th normal day i felt fine actually we called it early that day i went to the hotel and I was laying actually, it’s part of the whole story. So kind of my introduction I talked to people is what I’ve learned is stroke is not discriminatory in any way.

Kent 5:11
It does doesn’t matter what age race, what sex you are. The only thing I think is kind of unique and interesting was my story was kind of unique because here I am in Mexico working. And I had stripped off all my clothes to get ready to lay down and relax for a little while before going.

Kent 5:29
So I’m laying on my bed naked, reading Google News laying on my back. And I felt this quick it felt like a little dizziness, like a quick twinge, but no pain. And I really had nothing leading up to that moment. And my instincts, for some reason, were to try and stand up.

Kent 5:49
So I swung my legs over the edge of the bed and stood up and instantly, my left side was just paralyzed. And I collapsed Tim to the headboard to my left. And then part of my story, I have like three elements of my story is luck, great people and hard work. The luck part was when I fell back to the right, I hit my cell phone, it was on the edge of the bed.

Kent 6:13
And it fell beside me to the floor. So that was I didn’t know at the time, I thought is, have you ever seen like YouTube videos and athletes and they’re crossing the finish line and everything’s going kind of haywire and you can’t control your body and your muscles are spasming.

Kent 6:32
So I thought I was in some sort of dehydration. When I hit the ground. That’s what I thought. Then as I lay there, of course, I think my first instinct, I realized I was naked, and I was in trouble. So that kind of crossed my mind.

Bill 6:47
Hang on, hang on, you’re in trouble, because you can’t walk or you’re in trouble cuz you’re naked.

Kent 6:52
Because I was naked.

Bill 7:00
You can’t walk. Mate you’re not in trouble cuz you’re naked. You can’t walk my friend.

Kent 7:07
That’s right. So it’s like we’re young. Our mother would say make sure you have clean underwear in case you got in an accident. You didn’t want to have dirty clothes, right? So I’m on the floor.

Bill 7:16
Quickly deleting your iPhone, Google search history as well.

Kent 7:21
Yeah, so I haven’t picked up my phone yet. It didn’t really register. So I’m staring at this door across the room. And I thought, I’ll drag myself to the door and kind of yell for help. Well, in Mexico, I knew enough Spanish. I use Google Translate 99% of the time. And I knew just enough Spanish to maybe yell for someone, maybe order some food. So like I knew enough, we had an interpreter there actually, that was helping us.

Kent 7:46
So I thought, well, if I can get to the door and yell, I can find some help. Bill, my right arm was strong. As everyone knows, it was a right frontal, my left side, nothing was happening. And I couldn’t, process it at first. So I pulled on the bed, which was beside me so hard, it actually pulled off the casters like on those I got this mess now.

Kent 8:09
And then I just laid my head down and I thought, I’m going to die here. I can’t, something’s wrong, really bad. I thought it made me a heart attack. And I just laid my head on the floor. And as I did that phone was right in my peripheral vision right beside me.

Kent 8:23
And so I got my phone and I dialed I had one other co-worker in the same hotel. And normally I think this is the other part of the story. He never answers the phone after when we’re out of work because he doesn’t wanna be bothered, right? He’s one of those guys, which is okay, I respect that.

Kent 8:38
And this time, Bill, I heard Hey, Ken, what’s up? I was like oh I said, Steve, I’m in trouble. Something’s wrong. I don’t know what can you get the hotel manager and come to my room. And with the COVID situation, everyone was kind of leery about how you interact with people in Mexico, they were very cautious about who could go to rooms.

Kent 8:59
So it seemed like forever and I’m still laying there naked thinking about Okay, now these people are coming to my room I have no clothes on. So they come to the room. I mean, I asked my friend Hey, buddy, can you pick me up, put some shorts on because I don’t want to be like encountered by some Mexican paramedics or go to the hospital naked to the lobby.

Kent 9:17
So anyway, the hotel manager calls 911 the paramedics show up and the English the translation was a big issue right? I couldn’t communicate. They couldn’t understand what I was experiencing. I think I didn’t really know how to communicate what I was experiencing.

Kent 9:35
I just kept drinking water over and over and over I was dehydrated. So we got a hold of the translator they were going to take me to the public hospital she said absolutely not please do not take this gringo from Ohio to the public hospital we’ll take them to their to the hospitals sponsored by the university.

Kent 9:55
And so I get to the hospital and the doctor walks in and so luckily, from my neck down, I was okay. And I didn’t have any facial paralysis, but from my shoulder down, couldn’t move hands fingers. And the doctor looks at me and he says it’s probably a vascular problem.

Kent 10:13
And I was like, what’s a vascular problem? I had no idea. Um, and he explained to me something’s probably ruptured in my brain or maybe an aneurysm. And so they right away took me in for a CAT scan, I had a hemorrhage about one centimeter in, and it was about a half-centimeter in diameter, hemorrhage.

Kent 10:37
He, was very optimistic we could get this under control, we just needed to relax. So at this point, I call my wife in the US. And all I said to her, because I didn’t know actually, it was right before they told me was I didn’t know what was wrong. And I’m like, Hey, I’m in the hospital. I don’t know what’s wrong, I’ll call you back. And, geez, I got a million questions. And at the end the morning like, I don’t have any answers, I’ll call you back. And I kind of hung up then you reflect on all those things you’d like.

Bill 11:06
Terrible.

Kent 11:07
Yeah. So then I ended up in the ICU for the rest of the night. They got me on medication and got me up to a room. Yeah, so that got me in the room. I sort of just allowed myself to relax, I wasn’t scared and got into the moment of it too much. Because I don’t even think I really understood what it meant to have cerebral hemorrhage.

Kent 11:36
I didn’t, I didn’t contemplate it, I don’t think and my wife is behind the scenes at home. She was she’s, you know, googling and talking to people. She realizes, you know, the high percentage of mortalities and long term effects. So they allowed me to rest on Saturday, Sunday, the nurses came in, we’re using Google Translate talking to each other.

Kent 11:57
I said, I would like somebody to put me on a handicap chair, I would like to shower, I want to try somehow, the only way I can get out of here and get home is to start moving and try to get out of this. And they’re like, No, you know, try to stay calm. You have an MRI on Monday.

Kent 12:13
But then my physical therapist, Alberto, he started big, very big man came in, young guy, but he had a very gentle touch. And he was very good with me. And not just teaching me some static exercises, but breathing and cemetry. And the things I needed to do that he knew I needed to be able to get out of the hospital and attempt to get back to the USA. So at that, like at that moment, Bill, my mission wasn’t like the stroke like this paralysis. And that kind of fear gripping me it was how do I get to the USA? Like how do I get to that point where I can go home?

Bill 12:52
Wow that’s the first thing in your mind is how do you get home?

How To Get Home

Kent 12:55
How to get home. Because I’m five hours south of the border. There’s no air, there’s no flights. I can’t move. And people started calling me. You know, I’m getting messages from friends in the US. They’re like, why doesn’t someone just throw you in an ambulance and drive you across America, I was like no.

Kent 13:12
First of all, I don’t want that because I wasn’t comfortable with the ability to try and get into something like that again, if you know something. So I call my wife and I pretty much concluded, I have to get to the point where I can become at least mobile enough to get into a vehicle and be able to manage myself to the US and get on an airplane and fly to Ohio. Right?

Bill 13:33
That’s delusional, though. Like, how could you possibly be in that state where all you’re trying to do is work out how to get home, you got a brain hemorrhage. You shouldn’t be going anywhere doing anything, because it could get worse very dramatically. And very quickly. Did anyone explain that? Or was it lost in translation?

Kent 13:54
So it was explained to me. I had some excellent I had two neurologists, and they were excellent. And they did explain to me the dangers and it even came down to the very last so in the end Bill, I ended up a week in the hospital and a week in a hotel was way how I ended up two weeks of like this trying to get well enough to like travel, right.

Kent 14:17
So I ended up there, for two weeks. And, every day, the neurologists they would come and sit and talk to me and they were excellent doctors. And the very last day, before I left, I had to go see the neurologist and he explained to me the risks of flying but he what we’re all trying to balance is the recovery, what we should be afraid of, I mean, we got COVID going on, we got border shutdowns. We got like, how do we balance all these facts?

Kent 14:47
So it was pretty crazy. But during the day, while I was in the hospital night, my therapist would come for an hour in the morning, an hour an evening and all day I would sit on my bed lifting my dead arm and my dead leg and the nurses would look in there say, Kent, do you stop? I said, I got to figure this out somehow, right? I just, you know, I was just trying to figure out some way to be able to recover.

Bill 15:17
So what caused the hemorrhage? What caused the blood vessel to burst?

Kent 15:24
So I never did get a real good answer. Initially, everyone says blood pressure, but then even when I was in the hospital, everyone’s taken by, they’re like, your blood pressure’s good, you’re healthy. You know, I was a runner. So I naturally had a pretty mild 117 over 65 ish, 52 heart rate, resting.

Kent 15:49
They think maybe it was environmental, too much of heat too much of like the work like working that much in the heat. When I came to the US, they asked me about any bacterias because that can contribute to something to happen. I was checked in MRI and three CAT scans for any deformations in the vessels.

Kent 16:09
Bill to this day, nobody can firmly tell me this is why it happened. Hmm. And part of my longer story is I think that and I’m sure for lots of stroke victims. And you know, from Facebook being parts of different groups and blogs. It’s a big, it’s a part of the fear for people is how did it happen? Right? Why did it happen?

Bill 16:29
Yeah. So with your blood vessel, a burst, and then did it stop bleeding? Is it confirmed to have stopped bleeding? And did I need to open your head operate any of that stuff?

Kent 16:41
So they did not have to open my head. So it went until Monday. So I happen on Friday night. On Monday night, I had to go for a second MRI. I had one on Sunday. And then Monday night, they had to make the decision whether they had to go in. And at that point through medication it had slowed down enough, they decided they did not have to go in into my head. So it did stop on its own.

Bill 17:06
You’re being monitored now for potential further bleeds or anything like that. Are you still going to MRI?

Kent 17:15
Yeah, so now it’s down to CAT scans, they monitor the size of the area. And so yeah, so now it’s down to about four months of monitoring the beginning it was every month for two months. And then now it’s kind of like a quarterly, you know, check. CAT scan.

Bill 17:36
So there’s still blood in your brain, there’s still a clot of blood that has leaked out of the blood vessel that’s still sitting in your brain?

Kent 17:44
That’s right, it’s about the size of a walnut about one inch in?

Bill 17:50
Yeah, well, that’s quite big. So mine was about the size of a golf ball at its peak. And it was there for about a year, and then finally got better and then went away, and then it bled again. And then there was another surgery and then there was surgery in 2014. So almost three years after the first bleed. I had a third bleed, and then I had to have surgery.

Bill 18:15
So at the moment, you’ve got away with it. And it’s a good outcome. And I remember feeling amazing and really, really well. Before the third bleed. And then not understanding exactly what stroke was because I kind of I had a very mild version of it. And I didn’t even experience any left side issues, no numbness, no loss of mobility, none of that until after my surgery.

Post-stroke deficits

Bill 18:47
So up until there for three years, I was a little bit naive about what stroke really was. And then when I woke from surgery, I had to learn how to walk again and use my left arm and all that kind of thing. So it sounds like you, got a really big shock. You couldn’t walk you had the massive impact from the bleed in the head. And then this seems to have slowly gotten better. And you’re walking, you’re moving around I’m seeing are you left with any other residual issues. Do you feel any numbness or altered sensation or memory problems? Anything at all?

Kent 19:26
So I actually so now I’m actually like. I am jogging now like I do some physical running. But I still have and it’s funny bill when I first when I first went to the hospital, I’ve had nerve pain right here in my left shoulder and my upper bicep. And when I was in the hospital, they would ask me what my pain levels were. And it was always just this nerve that was a high pain.

Kent 19:51
And to this day, I have real limited rotation in this left arm and the left shoulder. It’s funny I can move in a linear motion no pain but in a rotation or extension it like to put a coat on it’s like a tremendous amount of pain so that’s kind of and then when i was trying when i was learning to walk again from the drop foot i got a hyper extended left knee and i almost because that foot just kept hitting in odd positions and hyperextending and then i was real close to a stress fracture on my left foot because the drop foot in my foot constantly impacting incorrectly.

Kent 20:31
So i ended up going i had a different orthotic shoe with a higher arch that would kind of try and force my foot to land flatter i did i was in that for for about a month and that resolved itself but yeah the residual is in the left but but i have a question for you Bill because you had the reoccurrence of the brain bleeding is like what what do you think what’s your advice what’s been told to you what could you give feedback to somebody like me and say this is what they told me this is what to avoid is there anything?

Intro 21:14
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be? You’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things.

Intro 21:32
But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

Intro 21:57
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

Bill 22:16
Yeah, there is so my feedback would be, we didn’t know what caused the bleed in my brain for about I reckon about two and a half years. And then as the blood in my head started to decrease in size, and the MRI was able to see behind the blood because the blood creates a magnetic effect because there’s iron in blood so you can’t see MRI is not effective in diagnosing the actual cause.

Bill 22:47
What happened was when it got small enough the bleed in the head, they were able to see the blood vessel was actually faulty or, or it was an arteriovenous malformation, which is a malformed blood vessel. And under high blood pressure episodes, and I didn’t have high blood pressure either. But there could be a bit of dehydration running stress, whatever.

Bill 23:09
The thinnest, most weak blood vessel basically just gives way. So we learned that at about two and a half years in that that was the issue. And what I was told was that most of the times that these bleed once in a blue moon, and then sometimes they never bleed again, they heal and they never bleed, it’s very rare for them to bleed a second time, extremely rare for them to bleed a third time.

Bill 23:35
But their advice was let’s monitor it and then let’s see what happens. So we used I used to get a monthly MRIs, and then bi-monthly and then quarterly and then every six months and then by the time we got to two and a half years, everything started to look really good.

Bill 23:53
And then by about just about by about 24, 25 months some of the I’m not sure exactly what it was maybe beyond the actually just approaching the three year mark. I wake up in the morning and I felt numbness in my left side. When I was going to work I was in the car and I felt like it was also burning like there was sunburn on one side of my body only.

Bill 24:21
And I went to a hospital and they said it bled again and then my surgeon said we’re probably in a situation where we need to remove it now because leaving it is riskier than operating. So what they said to me was you need to pay attention to body your changes anything you notice that you’re not comfortable with a headache, whatever, take evasive action you know go to the hospital get it checked out immediately.

Expect the best prepare for the worst

Bill 24:48
And then from there it was me just kind of sitting not waiting for another bleed. I’m kind of the guy. I love the motto. expect the best prepare for the worst. And I’m just preparing the whole time for the worst-case scenario. So I went through that process of changing my diet, of course, stop smoking, stop drinking, I wasn’t exercising, because I couldn’t exercise, because I was told not to exercise.

Bill 25:19
But I was walking, and I was being active, and I was back at work. So I was doing a lot of those things. And then when it happened again, basically, I was the fittest, healthiest, best version of myself. When I went into surgery, I was able to, I said to the doctors be the best patient they’ve ever had, you know, delivered them a really good person or body or whatever you want to call it for them to operate on. And there wasn’t going to be a lot of complications with a guy like me is basically what I was saying to them.

Bill 25:53
So we had a really successful surgery, except when I woke up, I couldn’t feel my left side. And it had nothing to do with anything, it had to do with just the location of the faulty blood vessel that I had to remove. Right. So my suggestion would be, I think you’re doing the right thing you’re on the right track, always consult with your doctors and neurologists.

Bill 26:15
And if you feel uncomfortable or uncertain, get them involved more often make more appointments, even if you have to pay for them, even if they’re not covered by insurance, even if whatever just find a way to make it happen. So that you can have peace of mind and your wife can have peace of mind.

Bill 26:30
Because when we had peace of mind, we went about life differently more calmly, and we did a few things, particularly few things off the bucket list. And I because I did consider my mortality, I did think that this thing might kill me. So I started to just be as informed as possible by the medical world. And then with that information, I made decisions about how I’m going to approach my life, my day, my year, whatever.

Bill 27:01
And it worked really well for us. It was my decision to have the surgery. In the end, my surgeon still gave me the option to not have the surgery. But I decided to go for it. And then what’s happened now is that blood vessel is no longer there. And it can no longer bleed, there is no way that it can bleed again.

Bill 27:21
So I’ve resolved the matter once and for all, even though I live with residual side effects fatigue, left side tingling, numbness, balance issues. The whole kit and caboodle the left side, you know, is tensor more tight, more cold. Although nobody can tell, no one else can tell. So it’s a bit of a strange situation to have this experience and not be able to express it in a way to other people. How does that resonate for you?

Kent 27:58
I like that, and I appreciate you giving me that guidance. Because I think in my mind, I think you’re exactly right. I need to shift a little bit more into my regular follow ups and make sure that’s a priority. I think that’s an excellent advice. I did right away just out of fear. I cut out alcohol. I haven’t had any alcohol or caffeine. I never smoked. But we’ve my wife was already on a good path I got on her path.

Kent 28:32
And it’s like, I’ll try anything to not have that happen again. The paralysis was so debilitating. Every time I read a story or I see what’s happening to somebody or someone is on Facebook expressing how they feel. It’s a it’s a it’s it’s unimaginable and to avoid that alone to do anything, right. So exactly what you said that advice that even if it cost you money, if it costs you time if it cost you to sacrifice, I appreciate what you said because I definitely want to hold on to that as much as my internal grits of jogging and changing lifestyle.

Kent 29:08
So I really appreciate I did change. So I ended up stop. I worked for myself, I ended up in October. I was okay, so I only like 10 weeks and I was already like my doctor said hey, you know you’re clear, you can do things. So I already got like back into traveling and going. I went out to Phoenix for a project.

Dealing with Anxiety after stroke

Kent 29:29
And Bill the anxiety became overwhelming. And I couldn’t explain it. I had emotions that I never had before. Like I felt impatient. I felt anxious. When I was in a hotel. I wouldn’t go anywhere, even the bathroom or the shower without a phone in my hand because of that fear. It took me down so fast. It wasn’t like a sprain and you know firsthand. I don’t need to explain to anybody.

Kent 29:55
It’s a stroke victim listeners. It wasn’t. I’ve tried to tell people this wasn’t like a sprained back, or a sprained leg or a twinge in your neck paralysis took me down. And then I started replaying only scenarios in my head what if I like you said what if I was driving? What if I was by myself somewhere? What if I was in the shower? What if I didn’t have an all this started to grip me?

Kent 30:18
And I gave it all up in my wife’s even like just stop, stay home find a job close to the house. Come home every day for lunch and take a nap. I never used to be one of those. I don’t need a nap guy. You know, I don’t need a nap. I don’t need this. I don’t need water. If people that take naps are wimps and they don’t work hard enough. Now I come home with every day. And I take like a 15, 20 minute nap. Because that I’ve learned it. That’s what when we go to heart, even me now, I feel it very directly right here, right in right where it happened. And that’s when I know to slowed down.

Bill 30:49
And you know you’re not supposed to have any nerve endings in your brain. You’re not supposed to actually have any feelings in your brain. So don’t ask me how but I also feel my brain hurt when stuff is happening. And I can’t process it. I feel it hurt. But it’s not supposed to be possible. You don’t have any nerve sensations there any nerve endings. So I don’t know what it is.

Bill 31:09
But what you said about coming home and napping, napping is the best way to heal the brain like it is what the brain needs to recover. And there’s an amazing book by Matthew Walker called why we sleep. And that talks about all the reasons why we must sleep and his fascinating 20 year life story. You know, he’s been researching it for 20 years.

Bill 31:34
So he’s got an amazing insight. And sleep is your best friend. So if you can squeeze in naps, it’s going to recharge your batteries. But be it’s going to actually recharge your brain cells and how they operate and how they move. Right ration obviously, makes sense, you know, you need to read your hydrate. So that’s really important because that’s going to impact on fatigue and driving short distances and traveling less, I think it’s a great move, you guys did really the right thing.

Bill 32:03
And if it helps at the same time to reduce your anxiety, that’s a bonus. My, my wife decided that in 2013. So the first bleed happened in March 2012. And then in beg your pardon in fed 2012. And then in March 2012, the second bleed, and in 2013. And in 2013 The New Year’s my wife decided to leave Melbourne, Australia and fly all the way to New York to have new year’s in New York.

Bill 32:36
And I’m losing my shit can I’m going I didn’t say no, but internally, I was losing my shit. Or how am I going to be in the US, all I ever hear about the US is how bad the medical system is. The flight is 20 hours if I have another bleed in the airplane, that’s all over. You know, what the hell am I gonna do? Why am I leaving my comfort zone? Why am I leaving being five minutes from hospital to being? Probably a half a day from hospital? Why am I doing that? And if that happens in the US, it’s gonna cost me my house, my car, my everything, I’m stuck.

Bill 33:18
Nonetheless, you know, I didn’t let the fear control the decision. So I just let her I said to her, you organize everything. And I’ll turn up if you can do that. I’ll turn up. And that’s what she did. And we’re in the US. I paid for the most expensive insurance. I made sure that it covered for previous medical history issues. I made sure that it was going to cover for hospitalizations, all that kind of stuff.

Bill 33:48
So it became when we got to New York, and we were in there and we were experiencing, you know, December 26 in Manhattan. And then we were working our way up to the first of January 2013. All that stuff went away because I was there. And I was I knew there was a hospital nearby and our house was covered and all that type of thing. Every time we’ve traveled since then, it’s been the same for me. I can’t seem to get myself over that part of the why am I leaving my safety net? Why am I leaving my cave?

Bill 34:26
Now, it makes sense. And it’s logical. your body is going to you you they’d be stupid mate. Like you’ve got to stay home to you’re near help. I mean, that’s logical. So it’s a conversation that you’ve got to have with your head, your heart and your gut and your whole body and you got to go Okay, what are you telling me? Why is that important? Okay, what’s really important to me right now, where do I need to really be?

Bill 34:51
Okay, what action do I need to take and what do I not need to take? And you have to have this kind of internal dialogue and negotiation which is and make sure that it’s not just in your head. And also, you have to be completely comfortable with the fact that you’re anxious about this shit. Because you know what? It’s something to be anxious about.

Kent 35:11
Yeah. That’s all excellent points it when I first was traveling to Phoenix, as soon as I were getting a hotel bill, I was I felt like I needed that, like my blood pressure was I went bought one of those blood pressure risk things, I was so nervous about it. I’m like, reading my blood pressure every 10 minutes.

Kent 35:30
And it was always normal. And I think it was some attachment, right, some connection to being alone when that happening. And and since I’ve been home, in fact, it was funny when I was out there working. When I would get stressed, my left leg would feel heavy again. It scared the hell out of me.

Kent 35:51
And that’s when I told my wife, so I’ve been home now for about four months straight. And I’ve had no issues like that none. And it’s the environment and in, like you said in your head right in my head, something’s going to happen. I’m not home, all these factors, right? My doctor is not here. My family’s not here. It’s COVID. There’s restrictions. And separating myself from that helped tremendously.

Bill 36:19
My coaching clients often go through this, and they often work themselves up and then notice the symptoms are worse than they work themselves out more than the symptoms get worse, and so on and so on. So what’s happening is, when you’re stressing, you’re tensing your muscles, you’re decreasing blood flow, you’re decreasing, oxygenation of your body and you’re on your cells, you’re increasing perhaps your heart rates, your bloods pumping faster.

Bill 36:51
And of course, under those circumstances, you might as well be running a marathon, and fatigue is going to kick in. And then you’re going to notice your deficits more. And the best way to reduce your deficits is to breathe, calm down your breathing, that will open your blood vessels and increase blood flow that will increase oxygenation, and it will start to put you in an autonomic balanced state rather than a autonomic stressed state.

Bill 37:29
And that’s basically what you’re doing is a lot of people don’t realize that their head is in control of the process that’s occurring in their body because they’re overthinking something. And their body’s going, I better do what my head is telling me to do. Because my head is telling me that shit’s going wrong, I need a ramp up, I need to jump into fight and flight because my head’s telling me that stuff’s going wrong.

Bill 37:55
So you can intervene at that level by becoming aware of that, and then breathing, and then kind of circumventing the head and just getting into your body? Because then the head has to follow the body.

Kent 38:08
Right? Yeah that’s true. I think the other so the other part of all is Bill, so my 50th birthday was Christmas Eve last year, right, so all of a sudden, you feel like, I just had it, I’m getting ready to enter those years where I feel like now we’re gonna, like, we’re just gonna take off and you’re kind of at the end of the workings and then boom, you have this cerebral hemorrhage that is, like shook up our world.

Kent 38:36
And I think that was another big element of, you know, like, in my case, you stop feeling like a man, like a man of the house, like a man that’s there to take care of his family and like a leader in your industry, like, all of a sudden, you just feel like something else, right?

Kent 38:56
And I’m sure it’s not just stroke victims as people that have cancers or anything else that occurs to them that it got a lot better for me, but to be honest, at first, like five months, I probably had more I was dealing with psychologically. Then my physical part, I was real proud of myself.

Kent 39:18
But psychologically, I was dealing with a lot of different fears. I think, a lot of fears. I never really had fears in my life. And all of a sudden had these fears, right?

Seeking help


Bill 39:31
Did you seek out anyone to help you?

Kent 39:34
Not professionally, um, it was hard. When I came back from Mexico I no one would see me because I had been in Mexico, right? So even just to get into the neurologist took me three weeks. And my first neurologist was only going to see me via video six weeks later, and I said no, I’ve already been instructed by the neurologist I need to have another CAT scan at that four week mark.

Kent 39:56
So that was going to be mid September. They weren’t gonna see me till October. video I can’t do this on my wife kept calling, calling, calling and finally found somebody in a different city that was willing to see me and, and physical therapists wouldn’t see me. It was five weeks from the time I got home before I could get into physical therapy.

Kent 40:15
So if I wouldn’t have had like my guys in Mexico. So in Mexico when you talk about cost, when I stayed in the house, they were going to discharge me, like on a theater on Thursday, on Friday and industry, I asked him, I begged him, I said, Please, can I stay till Friday because I’m scared. I told the doctor straight off. I said, I’m scared. I don’t know what to do. I have some friends here. But, you know, I said, I don’t really know what to do.

Kent 40:38
So I arranged to go to a hotel and get a handicap room. And I arranged with the hospital to send nurses to the room in the morning. And a physical therapist, the same physical therapist would come visit me at the hotel. Bill, the nursing was $6 us an hour to come to the hotel to help me. And the physical therapist was $30 I come back to the US my first visit with a copay for physical therapy and occupational therapy when I finally got to was over $500 right.

Kent 41:09
So luckily, when I was in Mexico, I could keep paying for the people to come every day, every day, every day, like we were just playing screwball stuff being the nurse guys would play catch with a ball a little bit, you know, we would do little agility things. The physical therapists he knew I was trying to get enough agility, strength, whatever. It wasn’t much strength, but more balanced control.

Kent 41:30
So he was pushing me hard. Like he’s got me in a hotel room doing swimming moves I want I couldn’t even move my arm, I can’t do it. He’s going stronger, stronger in Spanish. go go. So I come home. And I told my wife I said, I read a book I was calling it up. When I was talking to you The Brain’s Way of Healing by by Dr. Dodge its was the as a good book, I read that when I was on Google Books, while I was in the hospital, I called my wife I said, buy me a 10s machine off Amazon the best we can get off Amazon obviously not medical grade, but still.

Kent 42:03
And one of those under desk bicycle things because Alberto in Mexico was teaching me a lot about symmetry everything I had to do with him with some with symmetry. It’s all symmetrical every single exercise, right? And nothing was without symmetry. So my theory was if I could stimulate these muscles, they weren’t doing anything on their own. And I could get on this symmetrical bike and keep doing the static exercises. At least till I got the physical therapy, I would be at a good foundational base.

Kent 42:29
And then Luckily, the weather was good enough, it wasn’t winter here. My wife would take me to our local college, I would do steps getting the wheel, I would step with my cane. But again, to seek help, it was hard because I couldn’t get him license. And yeah, luckily and I think it’s you know, a lot of caregivers, I read about that you’re on different Facebook sites. Luckily, my wife, like she bought into it wholeheartedly. Like this is a mission of ours, not just mine to try and rehabilitate, and food and rest and you know, I blow my stack and we went for a walk and in time and I got upset threw my cane across the park.

Kent 43:14
And you know, things all happen, right? Sometimes we have a little wacky about I couldn’t walk I was frustrated and I you know, would fall down and but but luckily, I think a huge part of it. In my ability that learn to grip with it was I had someone on my side that was going through with me. And the fact that we decided together like look, this professional stuff going on broad is going all over is not going to work. So to answer your question, no, I didn’t get professional help. I don’t wanna make any excuses for it, because I think there is value in it.

Bill 43:30
There’s value in it but you had a stroke at the worst time. And you can’t really do anything about that. I know, lots of people had stroke during COVID. And unfortunately, they all went through the same kind of terrible time trying to access support help anything.

Bill 44:08
And it’s one of the big issues about strike at the moment. It’s that it’s delaying people getting support and getting help and getting therapy. And therefore it’s making the recovery more challenging. So, you know, it’s a real issue. And look, it’s not something that you can’t do. It’s something that you can do any at any time. And why I’m saying that is because stroke recovery is not just about the physical part.

Bill 44:31
It’s an emotional recovery. It’s a mental recovery. And it’s a physical recovery. There’s three elements to it. And if you’re just doing one of them, they’re not paying attention to the rest of the recovery. It’s really important that you’re not just doing one of them and not paying attention to the others emotionally.

Three elements to stroke and anxiety recovery

Anxiety After Stroke
Bill 44:49
My biggest recovery I think was the emotional one. And it still is and I spoke about it on Instagram blog posts I did the other day you know, which was about about emotions that just come out of nowhere. And I started crying, I’m at a party. And I’m with people. And they ask a lovely question, or they’re curious to know about me. And I started telling him a little bit of a story.

Bill 45:14
And then before I know it, I’m, you know, crying all over the place, and it still happens, and it’s nine years out. So that’s kind of where my, the majority of my ongoing recovery is sort of focused. Mentally, I did the counseling, psychology, all that kind of stuff, and I still do, I still get counseling and coaching. Because I don’t believe that I’m going to do all these things in my life on my own.

Bill 45:39
You know, I’m trying to have a podcast, and run a podcast and run my life and run my family and run my work and all that kind of stuff. Imagine trying to do that all on your own, and not knowing how to do any of it, and really learning how to do it. I mean, it’s just not something that everyone should take on their own alone, it’s something that you should reach out for support with and the support doesn’t need to be dramatic.

Bill 46:03
But somebody taught me how to record an audio in an interview, and then how to put that on a podcast page. If I had tried to work it out myself would have taken forever, and I don’t have forever to try and solve every problem on my own. You know, when you’re working with Tesla, they’ve got people to help with everything. And there’s a reason for that is because Kent Bragg, he cannot work out how to make a Tesla car work on his own.

Kent 46:28
Yeah. That’s right. And I think I think that’s why when I was going through recovering, I started like jogging and running again, get replaced, like some some of my profession like, well, how I used to be 100 miles an hour in my profession. I think it’s replacing that because psychologically, it’s a way for me to measure progress. I’m that kind of person, right? I have, it’s a way for me to fill that void.

Kent 46:57
And for a while, my wife thought I was getting wacky, because like, two, three times a day, I’m getting on my treadmill doing a mile or two. And she’s like, I think you’re getting addicted to this. But I think kind of like what you were saying, it was a way for me to feel like I was making progress and measured, right? Because I changed gears in my professional life.

Kent 47:19
And another thing back up, and I’m sure people can relate with this. I go back in the professional world. And all of a sudden, there was like some simple things I couldn’t figure out, like some simple math things. And that was my thing before. And like somebody asked me something in a meeting, and I said something like crazy, it wasn’t even accurate.

Kent 47:37
I’m thinking after the meeting, as it were like it wouldn’t, I couldn’t like process it immediately. And so, like the exercising and the fitness became a way for me to measure some progress. What’s kind of scary is what happens if you don’t want to do that anymore? Like where do you keep finding the way to know you’re okay, like after the stroke?

Bill 48:00
Curiosity? That’s it, just get curious and notice little things. I asked the other day, you know, on the Instagram page, what are some of the little things that people have had a wind in recently? So in order to try and get people focusing on the little wins? So not the big ones? Not I can run a marathon again. That’s kind of what the question was about.

Bill 48:25
And I have a listen to what some of the people said, my mom woke up and cooked a meal for me. Better balanced to ride my bicycle. My five year anniversary is coming up. Since my stroke two years ago, I lost my appetite. And now I have my appetite back. I was able to wiggle my toes in my left foot haven’t been able to do that since the stroke and put flip flops on.

Bill 48:55
Went back to where I was two months ago. With my family. I was snowboarding, I can tie up my running shoe laces. We are tied over those, you know. So that’s how you measure it, you measure it by the little wins. Of course, you measure the big wins, I’m walking again, or I’m moving again or I’m working again.

Bill 49:22
But you measure all those little things as well. And when you haven’t got anything that’s obvious, just become grateful for what you’ve got. And gratitude means he’s going to take you to the next level, even though you’re not really noticing changes or anything like that.

Bill 49:39
But just noticing that you’re grateful about stuff is a really good thing. I just started to become grateful about things that I could do. After I wasn’t walking or couldn’t walk. I was just grateful that I had opportunity to be in a hospital where they could teach me how to walk again. Oh, my God.

Kent 49:56
Yeah. So I developed a, I think for the future, I want to study like some physical therapy kind of education, like try to get into more that have a deep empathy. A lot of people I read on different sites, they all of a sudden you have an empathy for people to go through this.

Kent 50:20
Because in the US, and maybe other places I can’t expect, speak for everywhere, but if you don’t have access to the medical care, or the or the father, there’s a huge gap between where people can, what you can get. And for some people that may not have been naturally athletic or naturally want to work out or, you know, they may not be able to get that same sort of traction, I think that I had.

Helping others after stroke

Kent 50:48
So, you know, part of my passion as I get older now, and as I move forward in my life is I want to be able to work with people and possibly help their physical kind of coaching level, it’s one of my passions now.

Bill 51:04
Beautiful passion, mate and it’s for a great cause. And guess what’s going to happen as you’re helping other people get physically more active and better, it’s gonna help you get physically more active and better. And it’s just a matter of time. And that’s kind of what happens to me, you know, when I’m coaching people, of course, I’ve got to practice what I preach, otherwise, I can’t really take them through.

Bill 51:26
And I can’t be the guy who, you know, says, do this and do what I say not what I do, you know, I can’t be that guy. So it helps you stay grounded to your core values, your core beliefs. And really, it’s like, all these people listening to my podcast and keeping me accountable. There’s 4000 downloads a month, nearly. So you know, I’ve got to walk the walk and talk the talk.

Bill 51:54
Because what’s the point of doing it if I’m not, and that’s what you’ll find? You’ll find that when you support somebody, and you see somebody overcome something or achieve something, you’re gonna feel so good about that. So I really encourage you to do that. Now, I realize also that you’re only about a year out. You’re not that far out from stroke.

Kent 52:13
Yeah, no. It’d be eight months in April.

Bill 52:17
Just give yourself time, mate. Allow yourself the time to just get you right first, do you first and then worry about everyone else. So I didn’t start my podcast until 2015. And that was a full year after my brain surgery. But it was almost three and a bit years after my initial experience.

Bill 52:40
And even then, I wasn’t really into it fully. I was interviewing people haphazardly, and not too much and not with too much focus. So I was just doing it just to meet people all over the world. And it was great. Give yourself heaps of time to just get Kent right. And then start focusing on everybody else. But if that brings you joy, if it brings you joy, helping other people when you can, when you feel up to it, then do that as well.

Kent 53:11
Yeah, yeah. As I’ve been so my new jobs and is it a university that’s real close to our home. So that’s been a real rewarding change coming out of primarily, I was an automotive my entire life. So now it’s a real nice transition into a different way of thinking a different way of prioritizing. Like my efforts and where they’re going and, and that larger perspective of, you know, why do I get up every single morning and go do something?

Kent 53:41
So it’s been pretty neat and and you know, I think that’s a again the beginning of my story is luck great people on hard work is kind of how I structure my story. And I you know, I think kind of luck at the end there is also still because I still have great people and things have worked out well.

Kent 54:05
And but I really it’s funny, I never knew anything about a stroke ever. I didn’t know anything about anything really medical to be honest with you. I was kind of like nuts and bolts like I said, industrial entrepreneur dude. And now I’m like learning about sites like yours.

Kent 54:22
And talking to people online. And you know, the experience. People have lots of different types of stroke, obviously, you know, some that you know, what affects the speech and memory and it’s, there’s so many elements of it. And there’s so many parts of it that are really scary, right?

Kent 54:41
There’s so many different ways and in in types of strokes that can happen. But going through I definitely developed a strong sense of empathy for people going through it people. You know, I never really thought a lot about ADA, American Disabilities Act until I was 18. in a wheelchair, and I’m in this hotel in Phoenix before my the night before my flight fans like a Radisson hotel real fancy, well, the carpets too long, I can’t wheel, I can’t get in the door.

Kent 55:12
I couldn’t, you know, it’s like, all sudden you start to think about these things that are important to people that are that are handicapped in that situation. And so that it definitely changed my life. And, and it’s I don’t feel that gripping fear is starting to not be the gripping fear, but it’s still a respectful feeling of like you said, walk the walk and talk the talk.

Kent 55:39
Because you know, I now even people in other conditions that I work with or encounter, they have things that have nothing to do with a stroke. But I say, Hey, you know what, what’s going on with your diet? More? Hey, you know, how’s your hydration Look, I used to be that guy. I only got coffee from water and beer. That’s it. That’s where I got my water from, right?

Kent 55:59
So but now, all I drink is water all day. And I find it refreshing. It took about six months and for about the first five months after the stroke. And every night, I would dream about having a beer with guys and hanging out. Right. It was like this psychological thing.

Kent 56:15
But now, you know, like, I’m reminded of it and I, you know, remind people like, Hey, you know, what’s your diet look like? You’re having some blood pressure issues, what’s your diet look like? You know, you’re having strains in your knees, like, you know, what can you do from a physical standpoint to help with that? So those were some of the things that beyond the physical part.

Bill 56:39
You know, the thing you mentioned with the beer with the mates, you know, it’s also an emotional thing. Because if you think about it, you know, having a beer with your mates, talking junk, and just having a laugh and relaxing, it’s got a lot to do with the emotional aspect of that, you know, that’s how we connect with people. And I don’t know about your mates, but my mates struggled when I stopped drinking alcohol and going out with them to bars or clubs or wherever.

Bill 57:06
And then drinking water or asking for an ice to water to make it look in the same glasses of vodka to make it look like I was having a vodka, you know? Yeah, they really struggled with that, you know, it was a bit of an issue for them. More so than it was for me, because for me, it was a no brainer was no chance I was having alcohol, especially in that critical period where things could go seriously wrong, you know.

Kent 57:33
I’ve even had some people challenge me and say, they told you you can’t have alcohol and no one. Bill they like flat out told me. Nobody said you can’t have coffee. No one said you can’t. And I still have decaf coffee sometimes. Right? Just for the flavor. Yeah, so no doctor specifically said it. But the more I read, like number one thing was keep blood pressure down. Right? So anything that was a blood pressure increaser became a priority.

Kent 57:58
And, my response to them always is somewhere along the lines. Not exactly, but no one told me. But that paralysis was my scared straight program that fast. No, hey, I mean, if you wanna scare someone straight? Yeah, that was it. Because to be in that situation, again, I’ll do whatever I have to do to avoid it. No matter what it is.

Bill 58:21
I hear you and I also say to them, you don’t want me to be sick again. Do you? I do a little bit of the emotional blackmail on them? You know? Because they they mean well. And I know why they’re saying what they’re saying. It’s just, you know, we can’t i can’t be the same like I was because I’m not the same anymore.

Bill 58:41
Things changed that day. And I’m not willing to go back to that. And I tell them now that, you know, when I drink I feel like I’m having another stroke. I mean, that’s not fun anymore. Like it doesn’t feel nice. I know, I’m not having another stroke, but that’s what it feels like. I’m not interested.

Kent 58:57
Yeah, that’s what I told my wife, and she supports me 100% In fact, I joke with her all the time. I mean, we get modelos tonight, right? So it’s our kind of the joke because we know we’re not going to but that feeling of not having control again. I don’t want to deal with it. It’s scary to me. And as I as I’m talking to Bill, you notice I touch right at that spot. It’s still psychologically that like, it’s still an impact.

Bill 59:26
So it is your I know I know because I do that with my side You know, I always do this, you know, like I always tried to, I don’t know massage it or calm it down or something. I don’t know what it is, but I find my hand going there. Especially when I’m having that you know head stress moment, you know, that stressful moment or whatever, you know, my head’s over doing some story and I need to bring things down and I’ve got to go there and touch it and stop it and you know, do all these things and massage my own head and I don’t know what the hell I’m doing but it works yeah.

Bill 59:59
People would think that I’m bizarre and weird, which I am. But even more so, one of the things I wanted to give you is a bit of a gift. And this gift is a gift of a particular word to shift you from being a stroke victim to being a stroke survivor, the community talks about us as being survivors.

A Stroke Survivor

Anxiety After Stroke

Bill 1:00:28
And I like that, because what it does, it will shift your perhaps it’ll shift your, your state of victimhood and it will turn it into survivor. And the difference is massive a victim is somebody who is at the whim of this thing that happens to them, a survivor is somebody that’s going to become better because of it. So I’m going to give you that gift of you have earned the right to call yourself a stroke survivor.

Kent 1:01:01
Excellent. That’s great. Thank you. Yeah, well, I really appreciate this opportunity to talk to you. And when I put my story on the American Heart Association, I redid it when I want to do my podcast with you just like it kind of reframe like, the whole sort of story a little bit. But really, the and I, you know, when I talk to people on that work on the streets or out running, or whatever we do.

Kent 1:01:30
I want to encourage them to, I want to encourage them to to, you know, look at their life and if they are having health issues to to do a self assessment, right? Maybe, maybe, because I gotta be honest with myself, sometimes maybe it wasn’t just some crazy fluke of too hot to this, too. Maybe it was a part of us because of what I was doing. Right? My life.

Kent 1:01:55
And, and now, the ability to take a self-assessment is very valuable to me. And that’s what kind of what I like to share on my story is take a self-assessment. If people in your life or you need to talk to them, maybe you’ll give them a little bit of that take away from your assessment. And so so it was pretty crazy. But now I think I have a different way of looking at life for sure.

Kent 1:02:28
The years the days you count out seem to be more like you put it in perspective, right? Yeah, you put it there. And I I’ve had a lot of good positive things that have happened because of this, that there since this happened, that it’s hard to quantify, right? It wasn’t all bad. I there’s been a lot of good my life. Now. That’s a result of what happened.

Bill 1:02:51
Yeah, absolutely. And if you can focus on that, that will help. But also when the the terrible difficult things come up, deal with them as well. I did what you just said as well, I also took responsibility for my own part, the role that I played in making that blood vessel bleed, there’s no doubt about it. I was born with that. So it wasn’t technically not, you know, my fault that it happened.

Bill 1:03:14
And if I wasn’t born with it, maybe I would have gone through life without a stroke, but perhaps a heart attack. You know, because I was smoking, I was drinking, I was working too much. I wasn’t taking care of my body. I was stressed. I was yelling and screaming. And I was a mess. Like, there was so much shit that was going on.

Bill 1:03:34
That it makes sense that the weakest part of my body said, I’ve had enough I’m giving up on this guy, I’m not taking it. I’m going to bleed or lake or whatever it was doing. And then. And then if I wasn’t born with that thing, like how many years because I was 37? Kent. So how many years longer? Would it have taken for something else more dramatic to happen?

Bill 1:03:58
If that did happen, could it have been catastrophic, and then we’re not around to talk about it. And how much more time was going to go and live my life in that stressed-out crazy way. Because there was no enjoyment there. What was the point of living that kind of life, I was making everyone around me miserable.

Bill 1:04:17
So a lot of good has come from it. I’m the kind of guy I’ve managed to get to the point where I can reflect back on as many people that can say the stroke was one of the best things that ever happened to them. Lots of people can’t and I accept that as well. And I’m okay with that.

Bill 1:04:34
But I don’t know maybe there is a way for everybody to move towards that path regardless of the wheelchair that you’re in, regardless of the hand you can’t move or the job that you’ve lost and all that kind of thing. What are the gifts and what are the lessons that we can take out of it because we are not just our job and we are not just the kind of people that we when we walk or when we can use our we are most much more than that, and we have to find new ways to identify.

Bill 1:05:06
And that is our responsibility to do that. It’s no one else is going to help you find a way to be in the world with the deficits that you have. You’ve got to find a way that you know, you know, I’ll say this and I’m gonna say the only way I know how to be crass or be crude, is that you know what shits me is that the guy that wins a gold medal in the Paralympics, perhaps waited until he was a paraplegic before he decided to put it out there and be the best in the world at the sport that he chose. But I’m glad that he did that after that.

Bill 1:05:48
That shits me that he waited that long, but I’m glad he did it eventually. You know, I don’t know why we do it. Because I’m that guy. Like, I know who I am. Like, I’m not talking about other people here. I’m talking about me. So I waited that long to do a podcast. I waited that long to go to New York. I waited that long to do all this stuff. Yeah. And really, if it wasn’t for my wife making me do those things, so that I can brag that I’ve been to New York. New Year’s Eve. Yeah, I wouldn’t have gone I wouldn’t have done it. I would have gone back into my shell. Yep.

Kent 1:06:19
Yeah, I burned up the last decade my 40 and burn it up on the road, car plant you know, all these high profile stuff I’ve you know, I’ve rattled off the people sounds incredible. I’ve worked in aerospace, I worked in mining, I worked in audit, all these incredible things my entire 40s is burned up by 30s. My 50s would have been burned up exactly the same because I wouldn’t have stopped because it was the it was the lifestyle was the money it was the everything.

Kent 1:06:49
Well, now all of a sudden, I’m not gonna die. Now all of a sudden, I’m enjoying life. Now all of a sudden, me and my wife got the garden supplies out last weekend we’re ready to do last year, she did it all by herself because I was off doing car plans for other people, right?

Kent 1:07:02
So now, it’s funny when I start changing gears in December and decided to stop going on the road. I told Donna, I said, I’m going to burn up this year 2021, just like last year, and we’re getting going further back as he gets too depressing. But all of a sudden, now we’re living a different life.

Kent 1:07:23
And one of the most catastrophic things that maybe not, to me it was you know, lots of things happens, different people that maybe there’s more still happening. I don’t know that it took a catastrophic event to get me to this good spot I’m at. And I’m very thankful for that.

Bill 1:07:42
That is a great way to end the podcast. Kent, thank you so much for being my guest.

Kent 1:07:47
All right BIll, thank you.

Intro 1:07:51
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:08:17
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

Intro 1:08:34
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:08:55
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:09:19
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website or follow that your own risk and we are not responsible for any information you find there.

The post 138. Anxiety After Stroke – Kent Bragg appeared first on Recovery After Stroke.

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Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life Kent Bragg lived a full paced life when a bleed in the brain caused a stroke that shut down his left side and slowed down the pace of his life Recovery After Stroke 1:09:46
137. How A 12 Inch Blood Clot Caused An Ischemic Stroke https://recoveryafterstroke.com/a-12-inch-blood-clot-caused-an-ischemic-stroke/ Mon, 22 Mar 2021 15:41:39 +0000 https://recoveryafterstroke.com/?p=5948 https://recoveryafterstroke.com/a-12-inch-blood-clot-caused-an-ischemic-stroke/#respond https://recoveryafterstroke.com/a-12-inch-blood-clot-caused-an-ischemic-stroke/feed/ 0 <p>Tracey M. Brown was fit healthy and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/a-12-inch-blood-clot-caused-an-ischemic-stroke/">137. How A 12 Inch Blood Clot Caused An Ischemic Stroke</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Tracey M. Brown was fit healthy and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected.

Socials:
instagram.com/bodytracefit/

Highlights:

01:11 Introduction
03:26 Ischemic stroke
08:16 Ignoring the symptoms
13:54 Left side neglect caused by Ischemic stroke
24:38 Pre-stroke lifestyle and mindset
31:08 Tailored rehabilitation by Tracey M. Brown
40:29 Saving your energy
49:17 Post-post stroke fatigue
59:17 Helping others
1:05:19 Nutrition advice

Transcription:

Tracey 0:00
So I always tell people, so a couple of people in the beginning once asked me like, why are you so positive? Why are you not mad? Because of the simple fact that you had your stroke? A nd a lot of people reached out to me I’m mad, and you’re always smiling, you’re not mad.

Tracey 0:14
I said I had to deal with the fact that I had to sit with the fact that I honestly don’t believe. And even I think I said earlier, my sister, somebody I honestly don’t believe the stroke was for me, the stroke was for me to now be able to relate to a whole nother community of people that I never would have.

Tracey 0:29
Because of the simple fact. Yes, I was always in the health and fitness world. But in health and fitness world, everything I’ve done was in relation to where I am now health and fitness where I was actually a chef, went to culinary school, had my own catering company did all of these things.

Tracey 0:44
And everything works out on one, nutritionist I have a love for nutrition, supplements, things like that. So everything comes together. So I had all of these things. But it was like I didn’t have this one piece to help these people that were less fortunate.

Intro 0:58
This is The Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction – Tracey M. Brown

Tracey M. Brown
Bill 1:11
It’s Bill from recoveryafterstroke.com This is Episode 137. And my guest today is Tracey M. Brown. At the beginning what caused a 12-inch long blood clot to form in Tracey’s leg wasn’t that obvious. It was only after she woke up from a three-day induced coma, the doctors put the pieces of the puzzle together.

Bill 1:36
Now, if you enjoy this episode or other episodes of the recovery after stroke podcast and you think that others should hear Tracey’s story and the other stories that I’ve shared so far, please share the episode your favorite episode on your social media, and leave the recovery after stroke podcast, a five-star review on iTunes, or your favorite podcast app.

Bill 2:02
And if you’re watching on YouTube, click the thumbs up button and subscribe to get notified of new episodes. This is going to make a massive difference in helping other people who are searching for stroke podcasts on iTunes or the internet or wherever it is that they go to find good quality content about stroke recovery, it’s gonna make it a whole bunch easier for them to find that type of information.

Bill 2:33
So I would really appreciate you doing that for me, it would really make my day. Now, thank you so much for being here and listening. I really do enjoy making these episodes and they are so much fun. It is so nice to listen to a stroke survivor talk about their journey, where it started, how it evolved from being about surviving and overcoming and recovering, to getting on with your life and moving forward.

Bill 3:02
And for a lot of people finding a future and something meaningful to come out of the stroke. This episode is no different. So please do enjoy. And now it’s on with the show. Tracey Brown, welcome to the podcast.

Tracey 3:19
Thank you.

Bill 3:20
Thank you for being here. I really appreciate it. Tell me a little bit about what happened to you.

Ischemic stroke

Tracey M. Brown
Tracey 3:26
January 25, of 2019 traveling to California for Fitness Expo I passed out sometime in between there. So I actually made it to California and one of the mornings to actually get ready to go to the show, passed out and boom, wake up three days later. And they put me in a medically induced coma but woke up three days later they say Oh, do you know what happened? No. I have no idea why I’m here, you had a stroke and boom.

Tracey 3:54
So where were you getting to? What event?

Tracey 4:07
Now I can’t even think of the name of it. I don’t know one of those fitness shows and the Lord have mercy I can’t think of the name of but it was a fitness show. So long story short, after they bunch of tests because I had no previous health issues they found out it came from trauma that happened in 2018 where I had 400 pounds dropped on my knee.

Tracey 4:23
I know it sounds excruciating, but the simple fact that I was a bodybuilder and the way I lift and did everything previous it didn’t kill me and I didn’t break my knee. What happened was I ended up with three small tears in my knee.

Tracey 4:37
And it was two options. The surgeon was like, you get the surgery, it’s gonna hurt like hell rehab it back where the knee brace is gonna hurt like hell but he was based how the three tears were his suggestion was how you work already. I think your body will heal better with just going ahead and doing the rehabilitation first and get surgery to recover the tears.

Tracey 4:58
So we did the rehab and wore knee brace for approximately 16 to 20 weeks. So that’s what ended up finding out was in the process of me wearing in that knee brace and rehabilitation must have formed a blood clot that we were unaware of. So when I went to California to travel took the knee brace off, and boom, then this unknown blood clot traveled and that’s what caused the stroke.

Bill 5:22
Ah, wow man that’s crazy.

Tracey 5:26
Beyond crazy, because it was even funny with talking to all the doctors and they’re like, tell me about this, tell me about that. And I’m like, wait, you guys have me on 14 different pills, run my lipids. I am totally fine. I don’t have any of these issues. No, no, no, when people have stroke, they have all these issues.

Tracey 5:41
So it was crazy that they literally just put you on all these things, because you had a stroke. So once they ran the lipids, I will say they were like, oh, okay, now we got to run some more tests, because we don’t know why you’re in here. And that’s when they did brought us a specialist and kind of figured it out. But needless to say, I was able to get off everything. I’m like, Yeah, I don’t need your It was a bunch of nonsense they had me on everything you could think of. So I mean, I got off of that.

Bill 6:06
I was gonna say to somebody who is not as physically active as you isn’t paying attention to her health and wellness and her fitness and all of those things for somebody who’s not doing that, then it’s probably likely that other lifestyle factors, so the opposite of what you’re doing is maybe causing them to be in a situation where cholesterol and high blood pressure and all those things are an issue. Right? So medication makes sense, but they didn’t obviously see your Instagram, they didn’t know.

Tracey 6:40
Exactly. And you know what, it’s funny, you said that because was my family finally got that they were like, let me show you who she is. And they were like, wait, that’s why she looks like this they’re like, well I’m not sure why she’s in here. We’ve been trying to figure out with running all these tests, and we can’t find anything.

Tracey 6:55
And they literally brought some specialist that does all this. I don’t know. I took a million head test. And she goes, have you had any trauma in the body? And I’ve totally forgotten. And that’s when someone says one of my friends says yes, she had 400 pounds dropped on her kness last year.

Tracey 7:11
But she thinks is nothing and the lady goes, you’re insane. That’s exactly what caused it you have a 12 inch blood clot in your leg and I’m like, What the hell? So boom, it went from we have no idea how it happened to the trauma and your body in the leg which caused it.

Bill 7:28
12 inch blood clot?

Tracey 7:31
Yes.

Bill 7:32
Tracey, that’s massive.

Tracey 7:35
That’s what I’m saying. Like, I guess it didn’t really register as when they were saying it because she was just like she was talking. I don’t know. It’s funny because thinking about and telling the story now.

Tracey 7:45
Like I was in the hospital looking at them like, okay, but I’m fine. Like you guys and it was even funny because the Occupational Therapist comes in, he says, so you’re fine. Can you get up? I say yes. That’s when I fall down okay, what’s going on with my left side. I will say needless to say, I did stand up but I didn’t know that I will be off-balanced. So that’s when I was like, Okay, now we’re talking about some issues happening here.

Tracey M. Brown ignored the symptoms

Bill 8:16
So let’s check back a little bit. We know it’s a 12-inch blood clot. We know that now. You didn’t know beforehand. But did you not have any signs or symptoms, anything?

Tracey 8:28
I say absolutely nothing. I will say the only thing is when I say completely healthy. Previous to that I have one of my best friends. She’s a nurse. And she goes I do remember you say it a week before like have a random headache and because I don’t ever have headaches. I didn’t take anything.

Tracey 8:47
And she had remembered she was like you said it for about a week and a half you had a headache. And she kept saying well maybe you need some sleep but I just brushed it off like yes, I have a weird headache and the day before I actually when we got to California the day before I passed out. I was talking to her and she goes hey, you still sound like your head hurt. I was like yeah, it is weird.

Tracey 9:06
She was like well you need to eat and I still threw it off like yeah, I think I just need to eat. It was a long plane ride, I think that’s what’s going on. I was like, I’ll call you tomorrow. Let me eat and I’ll go lay down still so I guess that was my only symptoms was the headaches, but I threw it off as like this is weird because I never get headaches but I ignored it.

Tracey 9:26
So it wasn’t any excruciating headache or any migraines. So I mean, needless to say, after going through the stroke for a shoot a month straight, it was horrible with migraines, but I never even had them before so that week and a half to two weeks previous my girlfriend remembered that I said I had a headache but it was just I was brushing it off. So that was a sign of me had this random headache trying to tell him about and knew nothing about it.

Bill 9:52
Wow. So you know that clot was in your knee or in your leg and then did it travel up or did a portion of a travel up? What traveled up into the brain what was it?

Tracey 10:02
I don’t know what portions so that was funny so on the plane ride I’m like this plane ride sucks well the weather was bad and our plane ride ended up being rerouted for something because of weather so instead of it being like a four and a half hour it was almost like a six and a half hour plane ride.

Tracey 10:22
So again, me not having any health issues not thinking of anything. I’m brushing everything off like, Oh my gosh, I have this crazy migraine. Why do I feel like this? Talk to the store this Oh, you guys are just tired. The plane. everybody’s having a nap. And I’m still like, yeah, then I go from my legs feel heavy. Literally all of this is happening. My legs feel heavy. Okay, let me sit back.

Tracey 10:45
My legs feel like they’re 200 pounds. So I literally went from sitting regular to turning upside down. So that’s why I say this funny like thinking about all this. I did not know the guy next to me. He never said anything. I literally had my head in his lap and my feet up.

Tracey 11:00
So thinking about it now. Like, I wish I knew this guy and wish he could like it’s totally insane. But everybody was kind of like, we hate this plane ride? Like we were on the longest play right ever. So the guy was kind of laid out with one of these. And I ended up turning it over with my head in his lap and had my feet upside down.

Tracey 11:19
So I’m now sitting upside down on the plane. So nobody thinking, hey, is something wrong with you? Because I don’t think anything was wrong with me. I rode the rest of the plane ride like that. Probably about two hours.

Bill 11:31
How did you not get arrested on the airplane and have the police waiting for you at the airport?

Tracey 11:38
Everybody was kind of like having one of those like, this is horrible. Like, this is a horrible plane ride, like, I didn’t know this guy I literally boom like I was tripping out like, I tried to lay like this. I was like, I’m so uncomfortable. I was doing all this. And something was like oh my gosh, my legs but like they’re 200 pounds.

Tracey 11:55
I was like, I can’t sit here and I literally turned myself up, put the legs up in the chair, head in the guy’s lap. And sat like that. It was still weird. I got off the plane cuz it didn’t happen. So the next day I got off the play, going to get rid of car and I’m still like, you’re still just brushing it off. It’s really crazy how I completely ignore it. Like, I’m still feeling a little off. But whatever. I think I’m tired. I think it’s the play ride? So I blame you know, everything, everything else.

Tracey 12:21
But what was possibly happening, plane, ride? Go get the rental car. I’m sitting there waiting got the rental car went home. Everything was just weird, just but it didn’t register to me that something was going on. It was just like, I’m just having an off day. That’s really what it was. I’m having an off day. I wake up tomorrow and it’ll be okay.

Bill 12:43
I couldn’t register anyway. I mean, you’ve got no idea how is it ever going to register that something catastrophic could be happening?

Tracey 12:50
Exactly.

Bill 12:52
It never really, it’s the funniest lead up to a strike I’ve ever heard. And we’re laughing about it. Exactly. Serious outcome. Right? You let it walk you out three days later you woke up? And then what Where did you notice you were gonna struggle with what were the issues that you had?

Tracey 13:15
I still never allowed my brain to realize like, yo, you just had a stroke. I mean, yes, I’ve been in the fitness industry, as a trainer and health and nutrition everything for 18 years. But stroke? The general like me, I think of overweight, out of shape, over age, I had a stroke at what am I? 39 I had a stroke at 37.

Tracey 13:36
Like, who thinks of that and me the health that I was in. So I’m like, okay, I think I know a stroke is but maybe you guys need to tell me more, because this isn’t understanding there goes, well the stroke affects your right side of your brain. So your left side isn’t working I’m like, What do you mean?

Left side neglect caused by Ischemic stroke

Tracey 13:54
So completely. It was funny because I totally did not even recognize the left side. And so they were telling me this, but I don’t know why I still never registered but I remember one particular time I must have fallen asleep. And I woke back up. Nobody was paying attention to me and I woke up and I freaked out.

Tracey 14:12
My arm was on my stomach. So I didn’t know about the disconnection of the brain and your body. My own arm was on my stomach. I woke up, picked it up and tried to toss it. And going through all that I’ve caused a whole nother issue with my shoulder because I literally woke up like, what is this? And it kind of freaked me out like what is this on me? I picked my arm up and swung it completely to the other side.

Tracey 14:39
So for months, they had to give me a shot I had this horrible scapular issue that they I guess I must have thrown it out or somehow like I had to sleep on my right with pillows behind me because anytime I would try to lay back my arm would completely be behind me.

Tracey 14:56
I completely tossed it so I had the weirdest thing. going on, it was just me not recognizing the body. But at the same time, I’m not one of those people that like to sit down and do anything. So I was driving them crazy too because I kept trying to get up and they’re like, Ma’am, you can’t walk.

Tracey 15:13
Hello, give me a chance. Yes, I can get me out of this bed like to sit down. I still to this day, I’m not a person not to sit still. Like I’m always moving about or doing things. So sitting in the bed and things like that. I was driving them crazy, but they were driving me crazy.

Tracey 15:27
Because I’m like, Hello, somebody get me up. All I know how to do is work out somebody get me up to work out. So eventually, they got me two wonderful therapists. OT and his assistant came in and they were like, Oh, we heard she likes to work out. Yes, I do.

Tracey 15:41
Let’s work out. Because this is bed is driving me insane. So I will say I had I ended up at Keck Hospital had wonderful therapists there. And then they transferred me to Casa Colina in Pomona, California.

Tracey 15:59
So that was about an hour and a half away from LA. So that there I was in. I was there I think two months in-home rehabilitation center. Which they were excellent. I mean, when I say excellent. Around the Clock, I had OT, PT and speech therapy when I say and it was funny because they got the message from hospital, like this girl’s a riot. She likes to get up and workout, she’s not gonna sit in the chair.

Tracey 16:30
So when I finally met my PT person. She was like, Oh, I keep hearing that you’re complaining because the workouts too easy, and they’re not giving you anything to do. So I’m like, yeah, so they sent me this one girl, which is funny because I still keep in contact with her via social media.

Tracey 16:44
And she goes I heard you keep telling everybody to let you walk. Yeah, I keep telling everybody let me walk. She pushes me out of the wheelchair and says go. I’m standing like is she crazy? Because I thought I could but not knowing that I never took my first step.

Tracey 16:58
I was like, I guess I don’t know how to walk so eventually, I started taking a step. But I was moving too slow and her hand stayed on my back. Like go go, and she just literally kept pushing me. But when I say absolutely loved her, it was Teresa. That’s how she started my therapy, like get up and go. And I was like, dude, that’s exactly what I needed.

Intro 17:19
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse?

Intro 17:36
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation? Stop worrying, and head to recovery after stroke.com where you can download a guide that will help you.

Intro 17:58
It’s called the seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website now recoveryafterstroke.com and download the guide. It’s free.

Bill 18:21
Yeah, it’s lovely. She kind of figured out the kind of person that you are. And just ran with what was going to be perfect for you. And the other people are going how are we going to contain this person from getting up and injuring herself more and the risks and all the stuff that’s associated with not being able to walk after stroke because I was 37 when I had a stroke, I woke up from surgery, and my left side was gone as well.

Bill 18:50
And when I tried to get out of bed, I wasn’t a gym person like no chance. But when I tried to get out of bed to go to the toilet for the first time I came out on my left side, I stepped down with my left foot and of course my left foot doesn’t work out of surgery, like not even 24 hours out of surgery. I ended up on the ground in the hospital screaming because I fell straight away the first thing I ever did was fall out of bed.

Bill 19:20
So that’s what they we’re trying to avoid with you they we’re trying to prevent re-injuring you somewhere else, you know. So how was that first step? What did it feel like? For me when I did it? It felt like my foot wasn’t even there. Although it was on the ground. I could see it It didn’t feel like it was there and there was nothing coming back. So what was it like for you?

Tracey 19:47
Oh, definitely. It was weird because it’s like, you think you should know how to do this but it was like I’m trying to move but I’m really not moving. So it was really like you said, your foot wasn’t there. But it was almost like I wasn’t there. Like what the hell’s going on? Like, I’m not, I’m moving in, I’m telling myself, I could do it. And that’s what she was like, well, another thing they said, they were like, the funny thing is about the place where I had my stroke, I forgot where but they said, that particular area was one of those places that make you get up and make sudden movements.

Tracey 20:18
And my sister when she came, she was like, Oh, that’s not good, because she’s always been one of those people. So they said, now you’re working with somebody that has it twice per stroke here, there. And she was naturally that person that just jumps up without thinking.

Tracey 20:29
So it’s like me to do it. It’s like, Hello. I know, I’m supposed to do it. So I would try to do things without thought. And then my body will react. And then sometimes we react that sometimes it wouldn’t. So it was good that I had those therapists there that pushed me like, No, you said you could do it. So get them to do it. You don’t get to stop.

Tracey 20:46
You don’t get to run. And I’m like run? That was the weirdest thing ever. I didn’t think I would ever like it felt when I say absolutely insane. To run, you’re only using one side of your body. And the other side is like in your head is moving. And even still, to this day, even though everything works. If I don’t pump that arm correctly. I’ll ask people around me my hand was I moving? They’re like, no, it was just sitting there.

Tracey 21:11
I’m like what do you mean it’s just sitting there? So imagine the first few steps, and somebody tells you run and walk and oh, and another thing was before I learned how to run, the skipping was crazy. I’m like everybody knows how to skip. No, I could not skip. Oh my gosh, I think that was so hard to skip. So all of those things. It really was I guess it was like my mind was there. But then my mind wasn’t like, is this really happening to me? Like how am I supposed to move from either this place? So it was totally weird.

Bill 21:44
You were physically fit? I imagine you can run for a long time. And you could pump iron and you could do all those things. How exhausting though was it when you were trying to think about walking and think about running? Did you find yourself being in this weird state of fatigue and tiredness? And I imagined much quicker than normally than you would fatigue normally.

Tracey 22:09
Yes, definitely. But it did. But at the same time, like because I said I still never allowed my brain to say Yo, you can’t do this, my mind was still fighting with the reality of what was happening like you can do. So even they will be like, Hey, I think you need a break. No, I don’t think you need a break. You don’t want to sit down who I was just what else was like, No, I don’t need to sit down, I need to keep going. And they’re like, Well, we’ve been up we’ve been moving for X amount of time.

Tracey 22:34
And I’m like, I’m fine. So I don’t know, it was just I constantly kept fighting my brain in my mind. Like Go go go move, move, move you want to get up out of here. You know what you used to look like you know what’s happening. Because everything was hitting me like the more I laid in bed. Like I’m losing it. I couldn’t by this time. I’m in there about a month, I couldn’t fit any of my clothes.

Tracey 22:54
Lean mass had eaten completely eat and everything I had. So I went from I don’t know, it was like, I went from Gordon hospital, I was probably 116 to about 110 in a matter of like a month. It was insane. But it was just how the muscle works. Because Another thing I wasn’t eating didn’t have anything to fuel. And then when you’re not physically moving your body everything which is depleting.

Bill 23:15
Use it or lose it.

Tracey 23:16
Yeah. So I don’t know it was my I would say my case is pretty weird. But it was cool at the same time because everybody kept saying it was weird because I kept trying to push myself. And then it was funny. They had all these new machines and new things they were using like neurological machines from just a robotic-type things.

Tracey 23:38
So they were like, Hey, we have this new thing coming in. They asked us we have anybody that thinks could take the pain or take whatever. And everybody goes, Yeah, we have somebody that’s pretty crazy, right? So they were trying me on all these weird things.

Tracey 23:50
And I will say one thing in particular was, I mean, pretty dog on paper. Because they would turn up the dial with this electricity going through the body to try to get it to move. But at the same time my body has reacted to it. They’re like, wow, like you’re actually taking that pain because my thought process was, this is how it feels when you work out. So yeah I can take the pain. So it was just like, keep it coming. I don’t know, it was definitely weird.

Bill 24:13
Thresholds for pain would have been larger than the average person who hasn’t. Yeah, through that ninth or 10th Rep. You know, on the third or fourth set. Not many people know what that’s like what painful it is and how you’ve got to do the mind over matter thing. You got to tell the body. Just forget about it. It’s just pain. Just move on. Like Don’t worry about it.

Pre-stroke lifestyle and mindset – Tracey M. Brown

Bill 24:38
Your approach up until your stroke. So you’re 37 years old. You’re in fitness for 20 years. Do you think that training has held you in good stead for the type of recovery you’ve had and the type of effort that you’re actually able to put into rehabilitation because you’re talking about rehabilitation like nobody I’ve ever spoken to before, and I’ve done 137 episodes, nobody has spoken to me about rehabilitation like you. What do you think all those things that you did for 20 odd years beforehand, helped you with?

Tracey 25:23
Oh, it definitely did like so my motto previous to this was making a lifestyle and then make it a lifestyle is in relation to anything that you do anything that you do, make it a lifestyle, make it work for you. So yes, my level of fitness may not be your level of fitness, but figure out what it is for your level, what’s going to help you get to the next level. So if my mind state was always there as guess what this is my lifestyle, my lifestyle previous to this was this, I know how to get up, I know how to make things happen, it’s mind over matter.

Tracey 25:48
That’s just the life that I’ve always lived mind over matter, you can get up and make it happen, get up and make it done. You want your body to do this your mind once you get your mind to that state to say, Hey, I can do this, your that mine is stronger than the body at times, because and that’s what they kept saying, like, we understand what you’re saying, because your mind is telling you to do it. But we got to get your body to catch up.

Tracey 26:07
So I had to actually start because I was trying to do so much. And I appreciate the therapist, they would really try to figure out like, hey, she’s a different type of person. We got to figure out what’s gonna work for her. So when more people that was coming, I ended up coming to California that knew me, they were saying things like, she’s not gonna stop, you’re gonna have to get up and do like, it was one particular thing. With my speech therapist.

Tracey 26:30
She was trying to get me to get back into motion because she was like, Oh, she was like, I heard you coach you classes and things like that. She was like, well, we can’t get your pitch out. Which because I totally forgot my pitch will go. And we took one of my so what have come from a big family. So one of my students came, she goes, why are you talking like that? And I’m like, beat me.

Tracey 26:50
She tells my therapist, that’s not her voice my therapist goes I don’t know her voice. We just met her. So they played some old videos of me teaching some one of my youth programs. She goes, excuse me, that is totally not your voice. And I’m listening like, what did I get this voice from? That’s not me.

Tracey 27:07
So it was great, because that’s what she was like, Okay, now that I know you were a coach. Now I know that you were a dancer, you were all this. So let’s relate your therapy to that. So we went from she kept trying to get me to speak. It was like, nope, let’s turn on the music and teach this fitness. But I saw what the funny thing is 30 days into my in home therapy.

Tracey 27:28
I taught a fitness class for all of the therapists at the facility. Because they’re like, she’s she’s totally different. We got to get her out of this. We got to get her a speaker, we got to get her engaging in exerting her voice. So it was like so the first one we did was my speech therapist says, We’re going to do a line dance, do you tell us how to do the line dance.

Tracey 27:45
So it took me a minute. And I’m trying to clap at the same time trying to dance because I’m a dancer trying to dance class, say the mind gas and it wasn’t coming out. And my sister comes in and she goes if you don’t speak up, and I’m like I’m trying but there’s no pitch.

Tracey 27:59
So we kind of just get into the mode. And we’re going so I said I just had to, I had to turn my back to them. I said, Let me turn my back and just act like nobody’s here at my time doing this. And it started the speech started coming up. Then I started speaking and dancing and moving at the same time she goes, that’s what I needed. We didn’t know, this is what we were working with.

Tracey 28:16
So went from there. So that’s what she was like, do we say she goes, I want to talk to the head, I think we need something else to do for you. And so they’re like, we’re gonna have you teach a fitness class. And even in the midst of the fitness test, because how my brain works because fitness is life.

Tracey 28:29
I don’t even think about it. So therapists kept saying, hey, maybe you should write out the workouts to get ready. And I was like, Yeah, I write out the workouts, we’ll play a music listening. But even though I did, it was kind of like how my brain even works and how it worked previous. I’m not a person, I write that workout. It’s just I see people in my body in my workouts relate to what their body’s like, Okay, this person needs to work on bath buster, this person needs to work on legs.

Tracey 28:50
So even though I wrote it out, it was as the class got started the engagement, I started changing up the workout and like different stuff, like that’s not what you have on a paper but I just do it right in and I went from not paying attention to where I run on the paper, start doing the total different exercise.

Tracey 29:05
And before I knew what people my arms, I they were trying to one of the things they were trying to get me to do was a lateral raise before I knew it in the middle of the workout. They already know the difference. Tracy, your arms, but I’m just doing I’m just doing my natural.

Tracey 29:17
My natural thing and they’re looking at me like you haven’t done that since you’ve been here. But it didn’t register. I’m just boom, I got into the motion. I’m playing the music. I’m dancing, I’m teaching a class, then it was one thing I go, let’s get on the floor. We got to do the bath and like you can’t get up. I get on the floor. They’re freaking out. Like you can’t do that. I just did it. It’s like it was one of those things that I didn’t once I’m in my mode boom, my body takes over. And that’s what it was. I had to figure out something that related to what I was used to doing.

Bill 29:49
Have you reflected on that what you just said to me all this stuff that just came out? Have you ever reflected on that and said what the hell is going on with me like who is this person what is this thing? Like haven’t you ever gone what’s going on here? How does it freak you out? Doesn’t it amaze you?

Tracey 30:11
Yes, that I know now that you’re saying it That is crazy to think about it like that. That is crazy. Because literally it went from So say, for instance, so even we’re now that I’m working with and stroke survivors, I’m trying to tell them that when I say give them back to their independence is what were you doing before this? What is it that you’d like to do? What is what was your hobby?

Tracey 30:31
What was your something that you could do with your eyes closed? Me mine was fitness. So they turn on the music, we get me back into fitness, they say, hey, Tracy, we couldn’t get you to Oh, that was one thing. I’m going to skip this and say, so when they kept trying to get me to open my hand, I had the hardest time they’re trying to give me put a rag in my hand, try to put towel, pick up a piece of paper, guess what my hand open to they grabbed the weight and put in my hand my hand said boom, I picked up the weight.

Tracey 30:53
And then it was insane. So it’s like one of those things. So like when I work with people, I’m like, Okay, what were you doing before? Are you a hairdresser, okay, so let’s grab a wig or dial or something, let’s do something that you could do with your eyes closed.

Tailored rehabilitation by Tracey M. Brown


Tracey 31:08
And like that’s, so I’m using myself as how I went through the therapy, how I get my recovery as to help other people like Hello, there’s something that the brain does recognize, even though we had that disconnect, there’s something that it recognizes as a natural being to our body.

Tracey 31:22
So because it was a natural being, it’s not like, so it’s like another doctor, I reached out to me from a YouTube video idea. He was saying, he likes the way that I was going through a YouTube video showing something because he said a lot of people understand that general rehabilitation doesn’t relate to everybody, we got to figure out a lifestyle of something.

Tracey 31:40
And hey, this relates to you, this relates to us. So you tell the person in general therapy, hey, do this, open the finger lift the total lift, we can do something else that’s going to get them because within that’s what I ended, that’s what I had to understand for myself, because we have to disconnect with the brain.

Tracey 31:56
That’s why we can’t everybody can’t do general therapy, we still have to disconnect with the brain. We have to figure out another way that’s not general therapy that our brain somewhere along that thought process that happened before so in our life, that we can relate to the saying, Hey, I know what you’re trying to do.

Tracey 32:12
As far as the therapy move, I can’t I don’t know that I could do that. But I know I could do this because I used to do this. Like I used to pick up weights. So you’re telling me to open up the hand, that the whatever fifth digit of your head do X, Y, Z? Yeah, my brain it related to that right now. But pick up that way, guess what? Both my brain relates to that.

Tracey 32:31
So it’s I don’t know, the correct way to explain it. But it’s just, it just works like that. So the general therapy was not necessarily my friend. It was, hey, let’s take you outside of the box less. If you want to, like I kept telling the girl you take me to the gym, I heard you guys have a gym taken to the gym, I guarantee you I put them away. And eventually she got tired. It’s like, Okay, let’s go over here because I don’t know what else to do.

Bill 32:55
I think it’s about what motivates people, isn’t it? I because I did get asked what do I want to do when I was doing out of hospital rehabilitation. And basically what I wanted to do, one of the things was to run again, but not to run marathons just to run across the road from a car, that type of thing.

Bill 33:14
When I got asked, I felt really good about being asked, way different than being told what to do. So I think what you’re talking about is the opportunity for you to do what motivates you anyway. And what you love is going to have a bigger impact than if I told you Okay, I know. I know you’d like to lift weights, but you don’t like to ride a bike.

Bill 33:42
We’re going to focus on bike riding today. Whoa, whoa, whoa, what are you talking about? Why would I ride a bike? I don’t like riding a bike. It doesn’t benefit me. You know, I hate riding a bike. Why are we doing this? You would? Most people would do because the therapist asked them to or said Sir, exactly. They would hate every minute of it.

Bill 34:00
And if you’re trying to rehabilitate yourself and you’re hating every minute of the rehabilitation, it’s not going to have that beneficial effect that we want from rehabilitation. What the lesson is for you, and now applying that to the hairdresser who you know, has cut hair or loves fixing hair or doing things to hear.

Bill 34:25
That is a really good way to really get them motivated, yes to do the things that they need to do, because they’re not thinking about the rehabilitation. They’re thinking about cutting out Okay, I’m going to cut here that the problem with hairdressing is getting a victim in front of them who’s messed up by somebody who can’t use the seasons yet.

Tracey 34:50
It’s funny because the lady I’m talking about her daughter, she has a teenage daughter and I say hey, can you let her she goes no. I said but you have a lot I hear at least just let her do something. She goes, No, yeah, I’m not gonna do that. I said, Well, then that’s what she has to go to get her wigs and let her stand there and do her thing. I said, but she’s been your hairdresser for the 16 years of your life and you’re not gonna let her.

Bill 35:17
Too dangerous?

Tracey 35:18
Yeah. But I mean, in relation like, that’s honestly, I think, I think that works for so many people as to figuring out instead of because we rack our brains trying to see like, why can’t the hand open, we don’t know why the head that doesn’t open. And we have to go back to the whole mode of I always tell people even with once I’ve had to go back to the mode of if they never knew how to open their hand, they never knew how to pick up a bar or anything.

Tracey 35:43
So over time, they train themselves by trying by reaching and grab it. And that’s what happens. That’s the same thing with us, after our recovery coming out of his post-stroke, we have to do the same thing that it does, try to pick it up or missed it, try it again, I missed it, try it again.

Tracey 35:57
So eventually, after those 30 or 50 100 misses, eventually your hand is going to open up, you’ll be able to grab that bottle, the same thing. That’s how the kids that’s how the infants learn, like to hold their own bottle, we have to keep trying these things. But what the problem is, as adults that are having strokes, they’re like, Why do I have to relearn how to pick up a bottle? Like, it’s, it’s like, we know we shouldn’t because it doesn’t work anymore.

Tracey 36:22
But it’s almost like, it becomes tedious that it’s like, Why do I have to keep doing this? Why can’t it just work? Like why do I have to do facial exercises, make all these funny faces to get my lips to be even so all these things that which if it has no choice, that’s a part of their process of living. For us as adults, once we went through this, the issue is with us becoming?

Tracey 36:48
What is the word I’m trying to becoming? I don’t know what us is setting our new norm to say, Hey, this is where we are now. And unfortunately, we got to take 10 steps back to do all of these things that we did as infants to get ourselves better. Yeah. So I believe that’s the fight that we deal with his I know, I need to be doing these hand exercises a million times.

Tracey 37:11
But I don’t feel like, I wish my head were in, we might get to the point that I don’t feel like it because yes, the fine motor skills are not 100%. But I can pick up. I could do XYZ that I need to so we kind of push that to the wayside. And I honestly believe and I’m just thinking from my experiences because we still have that like why I don’t want I don’t want to have to do this all the time. But in reality, we have to do it in order for it to work.

Bill 37:38
Its way repetition. It’s the training, isn’t it? The training, the training, the stuff that the fundamentals, it’s the, you know, the foundry blocks, or whatever they’re called the foundation blocks, it’s stuff that you must do, because that does create a rewiring in the head.

Bill 37:55
And if you do that, and you’re really good at doing that, then the other things may come right. Do you look like somebody who would have been able to be to push themselves and as a result of pushing yourself, you’ve achieved great things in your sport. Do you find yourself comparing Oh, I used to be able to do this and now I can’t?

Tracey 38:23
Yeah. It bothers me. So I wanted those people but I’ll still do it. It’s funny because I don’t tell people if I go to a public gym now, which was the times I work out at my job, but if I go to a public gym, people that know me and know my reputation, like this little bitty girl can squat 400 pounds to do XYZ can leg press 1500 pounds.

Tracey 38:47
Some people look at me they haven’t seen me in a while, especially since we just coming out of quarantine and look like why is she moving that slow when she picks up this 45 pound plate? It’s funny just the other day. This big gym guy goes if you want me to pick the waist up, I cannot my natural self wanted to be like, I can pick up my own weights but I was like, you know what? Go for it.

Tracey 39:12
Now it’s like, I’ll only put on, I don’t know, maybe 400 pounds because my hand gets too tired for picking up the other 800 pounds. Well guess what? If you’re gonna tell me you can pick them up 800 pounds. Guess what, I could probably push 800 pounds but I always thought myself because I’m like, if I put all these weights on here, now I got to take them off.

Tracey 39:31
So I’m that does bother me because that’s my favorite thing to do is to do lens but I definitely play the mind game with. If you put all these on, you got to take them off or they’re gonna be a danger you because you didn’t put your weights back in the gym. So I cut myself off with half of the things that I’m doing because I don’t want to go through that process or I want somebody sitting up there like, why are you moving so slow? or Why did you almost drop that 45-pound weight?

Tracey 39:48
Because once I pick up 10 of those, my hands are tired down to all these things. So I do Do you want to know, I do go back and forth myself, like, Oh, I used to be able to do this, I used to be able to do that. But then I have to tell myself, whatever it is what it is you’re doing this.

Bill 40:09
You’ve become a softy you let.

Tracey 40:16
That’s exactly what it is. And it’s funny because some of the guys just still messing me in the gym. Like, that’s not even doing that you can lift that one leg, I know I can. But we’re doing this process. Now I’m trying to I’m stepping back and I’m doing.

Saving your energy

Bill 40:29
I like that though, that’s a really smart thing that’s saving energy. So what you want to do is you actually want to be able to push the weights in the exercise in the motion, lifting the weight onto the bar is actually taking energy away from you, to be able to do the things that you love, so let’s not take that energy away. Before you get to the thing that you want to do, let’s get somebody else to help you with that.

Bill 40:58
Because for them, it’s no big deal. And that’s a really smart way to remain able to have the enough energy to do what you love. You know, that’s like one of the episodes I made a couple of weeks ago, I was talking about some of the things that are important to me, for example, if I’m at home, or I’m not working one day, is that at the end of the day, dinner is ready for the family, my wife might come home from work at 6, 6:30 in the evening, the kids come home a bit sooner.

Bill 41:26
Now my kids are adults, but there’s still my kids, right? Yeah. And it’s really important for me to have a meal ready so that we can sit down and eat together. Now, if I have a my if I’m having a low day or fatigue day, there’s things I won’t do on purpose to make sure that at the end of the day, I can do this one thing that I want to do.

Bill 41:48
So I might not sit in front of the computer and edit that podcast or I might not send that email or I might not go for that drive and do that chore or whatever I’ll do absolutely as little as possible so that I can get to making sure that the thing that’s most important to me gets done. And that way, I still feel like I’ve accomplished something for my day. Even though all these other things haven’t been done. It sounds like you’re using a similar approach of in a very different way.

Tracey 42:17
Definitely I am it sucks indeed because there’s another thing I do well, which I took off, I said, I think I will take off for the rest of the month, I do meal prep as well, because I’m a chef. So I do meal prep for people, sometimes I may have 200, 250 meals to prepare, which asks, which is easy to me because cooking, that’s second nature to me.

Tracey 42:39
So boom, I can do things I can knock it out. But I will say something that should possibly take me 5 hours to do 250 meals takes me 10 to 12. Because my hand gets tired, I have to put the pot down instead of me picking up this big pot. Now I’ve got to split it in three pots, because I’m not going to be able to pick up the bigger pot. Once I get all the hot food in there. I can’t pick up the bigger pan.

Tracey 42:39
So it actually kind of sucks because I’m always like, so it’s like, I love doing this. But it takes up so much of me. So to the point that I said I need to take a break right now before I go to the fact that I hate doing it because I will literally that will take up my entire weekend because I started prep on Saturday, I got to finish up on Sunday with prepping and packing all the meals and everything is portioned all of these things.

Tracey 43:26
So because of this having a stroke, so post is like, Yes, I can still do these things. But now my time has doubled. And if I want because I’m a my OCD kicks in, I’m a perfectionist at the same time, everything has to look like this. And I want to move fast. I want to take in more I want to do 500 meals but 500 meals now gonna take 20 for all these things happen. But I have to literally tone it down as I could make this go so much faster by using this one big pot, but I can’t pick up the one big pot. No, I got to switch it into three pots so therefore I can maneuver with it therefore I can make it happen.

Bill 44:04
Tell me about rest days because you would have been at the gym a lot of days of the week and then you’ve definitely allocated rest days to make sure that your body gets the opportunity to hear and recover. So applying what you used to do in the gym to now you to your life outside of the gym because there is a big portion of that that’s outside of the gym. How do you apply your rest day and how do you know you need to rest when you’re at home and when you want to cook 300 meals and you decide I’m not going to cook them like how do you know?

Tracey 44:39
The craziest day, I honestly almost don’t know I think my body just shuts itself down. Like it completely shuts itself down like I think you would ask I think it was last week. When you put up a post to say something about poststroke do you guys find yourself staying up late or something to that.

Bill 44:57
If you’re a morning person or a night person.

Tracey 45:00
Oh, yeah, so I’m up all night. And I have the biggest struggle a The clock is like, I’m crying like, Oh my god, I got a client, Jesus, how did I do that to myself like I’m struggling to get myself out of bed where pre-stroke my hours of my fantails first one was for him I was done with everyone by 11 am or I am to 11 is to schedule work now.

Tracey 45:23
It’s like, if I don’t have to present to 11 like Thank You, Jesus. And guess what? And people used to say, hey, you’re not taking my class? No, I’m not taking my class. Now you call me and say, Hey, can I come at 10 o’clock? 11 o’clock? Absolutely. Cuz I’m awake. It’s like, I have no idea what the heck, and I’m trying to.

Tracey 45:40
And there’s another thing I was a person that my body naturally lived on for four to six hours. Now it’s like, four to six hours. And that’s a whole nother thing that my body is screaming, like, I’ll be up and try to get out of bed. But I can’t. But it’s unusual to me. Because for 37 years, I’ve been Boom, boom, boom, four to six.

Tracey 46:00
And now it’s like these last two years. And I’m in it’s funny, because I’m talking to people that nobody talks to my clients and like, and there’ll be laughing at me sometimes it was my first one. She’s like, Hey, did you just get up in the wife? She’s like, oh, four babies. I’m sorry, you were probably up to five in the morning. And I’m like, but I was like pushing myself because I’m trying to do it.

Tracey 46:22
Even though I may be up to 5am I’ll still take the 8am person cuz I’m trying to get myself back. But when I say it’s a complete struggle, and because I it’s just it’s it’s, it’s it’s been abnormal, because I’ve been doing it for so long. Because a natural person needs what I don’t know. What do you guys usually do? six, eight to 10 hours? To me, I never did. So it’s unusual that my body won’t let me get.

Bill 46:50
I love it. I love it. Normal people. Yeah, they do about 789 hours, I’m about seven and a half. If I get seven, seven and a half, I’m pretty good. Okay, if I’ve had a bit of a wake up in the middle of the night, then I need to add that time onto the, you know, it’s onto my sleep at the other side of it. So that’s seven, seven and a half. If I find myself if I have half an hour less a night, then by the end of the week, that’s too much. And then I’ve wasted by the end of the week. I can’t cope, you know?

Tracey 47:21
Really?

Bill 47:22
Yeah. But I always hear people say I have four to six hours sleep and I’m thinking that’s got to be unhealthy for you. But obviously, there’s a extreme there’s, you know, that there’s the normal, we’re gonna there’s the middle of the range where most people sit, and then there’s the extreme, the ones that need to weigh more, and then the ones that need a little bit less and it’s fine.

Bill 47:46
If you only had four to six hours of sleep a day, how busy was your day? How many things but What did it look like? Because it sounds like you squeezed so much into 24 hours if you’ve got 24 hours a week? What? out of 24 hours? What are you doing for all that time?

Tracey 48:05
And the craziest thing I’ve just always been one of those people that gotta be on the go I’m gonna do this I’m gonna work a little bit the gym from 4am to 11am I’m gonna come home want to cook these meals, I’m gonna dance I’m gonna go work out myself. I’ve always had to do 15 different things then. I’m not doing that. Then I’m teaching a new class. I’m doing this. I’m teaching the cookbook, but I’ve always be one of those people that go global 20 things for me to sit down.

Tracey 48:29
I don’t Oh, yeah, that whole 2019 and recovery. I was like, thinking of going crazy like to sit down and not do anything. It was I was like, Can I go to somebody said can I like hello guys I’m fine, like I had to literally get myself out of because even now these days, My days are a lot slower. The days that I sit here is still kind of bothers me like you never done this before to sit here and not do anything, which everybody around me is like Hello, Tracy, this is what you need to do.

Tracey 48:58
Sit down. And it’s funny because they’ll say God set you down because you never would sit down. So everyone keeps saying I don’t care what you say. And we’re thankful that you okay, but your stroke was not for us because God said you won’t listen to me. I keep telling you sit down but you won’t sit down everyone around you says.

Post-post stroke fatigue

Bill 49:17
And I get it like I get it because I didn’t really like spending time doing nothing or just watching TV or anything like that I don’t really enjoy it. It does bother me but some days that’s all I have to do. I can’t not do, I can’t do the opposite, I can’t push through, do you even do you even Tracey do you have days where you’re just wiped out and you must do nothing?

Tracey 49:40
I do have those days and it drives me insane. I don’t think it’s normal it drives me insane I’m like, Oh my gosh, I was horrible. I did nothing today but literally I’m out. I couldn’t if I wanted to but my body said goodbye. You think you got to get up and do it and you can’t do it. I do have it’s funny.

Tracey 50:02
I have a more than often it’s like, why is this another day and I caught myself trying to test myself. I think it was last week. Regardless of the fact that what time I go to sleep, I still wake up probably right about 4:45 to 5am to go to the bathroom all the time. So I said this time, if I wake up, I’m getting up and I’m going to the gym. I’m not let myself go to sleep.

Tracey 50:25
But I was so proud of myself that I got up and went to the gym. Even though I moved, it was ridiculous because I stayed up at 4:45. However, so I was moving. I didn’t get to the gym at 6:30. So I was still happy, like, wow, I got to the gym at 6:30 had energy did a workout went through the rest of the day, two days straight.

Tracey 50:44
I was wiped. I’m like, What the heck? How was that possible? Because I got up that one day at 5:30. It was like, I was wiped out for two days. Like I was like, Oh gosh, yeah, I guess my body can’t take it. That was last week. I was like, I just gotta accept the fact that I just can’t do it.

Bill 51:04
And you’re proud of yourself that you’ve got up and I love that you push yourself and you got up. You learned something that I didn’t need to learned that that’s probably not the right thing for me at the moment.

Tracey 51:15
No, is that definitely because last night? Yeah, I was so happy like, Oh, this is good. That mean I can get up. When I say no two days in a row. I was like, Oh my gosh, I have no energy. Oh my gosh, I can’t I can’t make take it up. No, it’s like, yeah, that’s not good. I can’t do that. And then the how one day in two days of nothing, that ain’t gonna work.

Bill 51:33
Yeah, that’s it. It’s like, I’m going to take, I’m going to take the enjoyment out of that day that I did get up and I’m going to have two days on my back. And that’s what planning about what you want to do is like, if it’s important for you to get to the gym, sure, just get there so that when you’re recuperating, you’re only recuperating for half a day, or even eight hours, not for 48 hours.

Bill 52:00
I know that I went back to the gym just before all the COVID lockdowns in Australia and all the crazy stuff in gyms was shut. I went back to the gym, literally for half an hour on a Saturday morning. And that’s it. And so accomplished that I got to the gym, that I did a half an hour, just like a just like a second like a fitness circuit.

Bill 52:23
I push through some of the challenges that I had, you know, I lifted some very lightweight, and it was real quick, like it’s a real whirlwind. And I remember reflecting back on my recovery having decreased from the entire rest of the day. So the gym session would be at nine or 10 in the morning. Instead of spending the entire day recuperating, my recovery decreased and it got shorter and shorter.

Bill 52:49
So I was about a half a day worth of recovery after that half an hour of quite full on effort and energy. So it was good to reflect on how quickly I was getting over that half an hour Jim shifted session and it started to become something really lovely to do. And then we had the lockdown and I got out of the routine. How has lockdown affected you? Did you guys have a big lockdown?

Tracey 53:19
Yeah, I was gonna say that that part sucked. Because I would say what are we going to lock down March. So between about March when I say I was back full throttle, like I was in me full throttle. Like I had a goal for myself to get back up to. I wanted to deadlift 500 pounds by March, I was at 350.

Tracey 53:38
So I’m like, Oh, I’m on the right path. I’m going boom, shut down comes. I finally get back to the gym. It’s like, I didn’t 20 pounds What the hell’s going on? By No, it’s like my body completely reversed. Like, after I worked myself up all of that time, get a shut down kick me out of my routine, which I was back running, doing everything timing myself with scripts.

Tracey 54:02
And now I was like, wait, and watch my arm was working. Now you’re telling me is not moving when I’m running everything like when at home. So it was like it is first of all it sucks, basically because it completely pushed everybody at home to stop everything they were doing. And myself. I know that made a huge difference. I mean, yeah, I was able to start doing things at home but still not the same.

Tracey 54:26
Not the same motivation not the same push. And when you hit that hole, it kind of just went into a slump. Like there’s nothing for us to do. We’re stuck in a house. So what are we doing? Like I tried the whole thing with social media. I kind of had the interview in the beginning like You know what, I don’t want everybody go into a rut. I started doing a virtual 7am and 7pm workout live workouts for everybody did that got kind of tiring? And I said okay, no, I do a workout. I record it, but you got to do it later.

Tracey 54:54
So I find myself doing that. And to me, I’m like these are too easy for me. So it’s not really challenging my body. The ones that I Generally, the workouts I usually record for social media is an easy workout, it’s not a really challenge to myself, so I could do those. But at the same time, I was in a slump, because I’m like, I did that for everybody else. But it’s not for me, because that’s not taking me to the level where I need to be or where my body likes to go.

Tracey 55:18
So that right, there was more of a mental thing for me mental challenges, like, Yo, I was doing all this work to get myself back up, got myself back up. Everybody, the whole world is at a halt. We can’t move, we can’t do anything. And so that’s what it’s had to tap in to figure out ways to still be able to do the things that I was doing before. And also because I knew I was going to ask, there’s so many other people are going through the same thing.

Tracey 55:41
So that’s why I start reaching out to people saying, Hey, who’s sitting at home not doing therapy XYZ. As far as survivors, you need help. And boom, there you go. I started doing virtual therapy, Helping Survivors. And it’s funny, because somebody will say, hey, the lady that you posted on social media where she lives, I’m like, I don’t know. I know, she’s somewhere in the world. I just we connected, I started helping her and she started getting results.

Tracey 56:05
And I posted, like, like, I’ll guess like, I don’t know, maybe she’s in New York, maybe or whatever. But it was just, it’s something that ended up happening. And I love doing it. Because it was to me, it’s like, and it’s funny, because, like thinking about doing it. And just because of from my religion, and based up my father was a pastor Christian background.

Tracey 56:25
So I always tell people put so couple people in the beginning once asked me, right, so why are you so positive? Why are you not mad? Because of the simple fact that you had to stroke? Where are you and a lot of people reached out to me, I’m mad, I’m just mad, you’re always smiling. You’re not mad. I said, I had to deal with the fact that I had to sit with the fact that I honestly don’t believe.

Tracey 56:44
And even I think I said earlier, my sister, somebody obviously don’t believe the stroke was for me, the stroke was for me to now be able to relate to a whole nother community of people that I never would have. Because of the simple fact. Yes, I was always in the health and fitness world.

Tracey 56:58
But in health and fitness world, everything I’ve done was in relation to where I am now health and fitness where I was actually a chef went to Coventry school, heavy metal catering company did all of these things. And everything worked on in one, nutritionist, I have a love for nutrition, supplements, things like that. So everything comes together. So I had all of these things.

Tracey 57:16
But it was like I didn’t have this one piece to help these people that were less fortunate and less fortunate being because less fortunate because of the disconnect they have with their brain but less fortunate as they don’t have to wheel them to drive to be able to do these things. And also the less fortunate being because they don’t have the knowledge to do these things. Okay, I had the knowledge. I sleep on eat drink and sleep fitness.

Tracey 57:37
Like it’s To me, it’s it’s like how I tell people, they’re like how are you thinking that workout? I didn’t think some of the stuff I do. I don’t think it’s names, but I just love doing it. So I know how the body works. I know it moves. I’m one of those hands on people fitness, all those types of things that I can look at a person say, hey, let’s try this. I may not know exactly what the time is called.

Tracey 57:55
But let’s try this. And then you say, oh, it does work. I’ve just always worked like that. Even with it’s funny when I really now I’m talking about even in relation to cooking. People say Hey, you got a recipe? No. Why did you cook it? I don’t know. I just do some things together.

Tracey 58:11
But then even going back, I brought in for 15 years, they’ll come up to me say hey, what’s that drink? You just make? I don’t know. So I’ve always operated like that. I don’t know, I figured out what this one particular thing tastes like in my brain just says, Hey, calculate both these things go together make it and they will come back to me and say, Can you do it again? I think I can, but I have no idea what it was called. I don’t know the recipe or anything. I just made it happen.

Tracey 58:35
So it was funny. It’s really funny. Because how I’m saying these things. It’s a relation to everything I’ve always done from my fitness, to cooking to bartending, I really don’t know, it’s just how my brain works to put these things together. And at the end of the day, it works.

Tracey 58:50
So the same thing is happening with this fitness in relation to if I had the fitness I had the nutrition background. Now the Lord said, Hey, I want to put you through a process of having a stroke. So you can now have a different understanding. You knew how to put all these things together, but having a stroke and actually going through this. So I always tell people, it’s a difference as a doctor to say, Oh, yeah, I studied this, I studied this. This is how you should react. But until the doctor actually went through this, yeah, you’re the neurologist.

Brown helping others


Tracey 59:17
So you understand that, but you did not physically go through this. You did not have to relearn how to move your fingers, make your mouth work, make your talk, speak, all of these things you have to have to think about and how your brain process all these things. So yes, you know that part, but you don’t know this part that we went through. So it was like I knew all of that.

Tracey 59:35
But the Lord was saying you don’t know this part. So now actually, haven’t you go through this gives you another thing that you can use to help people get and it really does give me a better understanding as to what I’m looking at people and I’m doing I see them struggling.

Tracey 59:49
As I’m trying to show them an exercise with moving the finger. I have the patience for that I have which a therapist in that field. There are therapists they may not have the patient say okay, you can’t get that. Let’s move on to the next one. No let’s not move on to the next one, let’s figure out how to get this person to do this. You don’t have the time, but you don’t have the patience if you think we should move at this level, but you don’t understand that we’re trying to, and we really can’t.

Tracey 1:00:10
So it’s I don’t know, it’s just weird because I obviously think, Okay, boom, now that I have this, I wanted this with you. And so when I work with people that I follow, have a word that I felt pressured, you frustrated for what I was frustrated to, but I understand why you’re frustrated, we’re going to be frustrated together until we get. So your frustration, I’m totally fine with your frustration, your frustration is going to help you get you invited to the next level.

Tracey 1:00:32
Because if you were frustrated, and I didn’t know where you were coming from, with your frustration, I wouldn’t be able to help because I know where you’re coming from, from your frustration, I’m going to talk you through this, and I’m going to work with you until we can get ourselves out of this midst of frustration and help our body physically get to the next step.

Tracey 1:00:47
So I don’t all of these things, I honestly believe, for whatever somehow somewhere that it was written that Tracy, I need you to go to having a stroke. So you can help all these other people because you have fun figuring out the science of the body and figuring out how things work, like I promise you, I’ll get on the phone with somebody, when somebody reaches out to me, I say, hey, let’s get on a FaceTime or zoom so I can see what you’re dealing with.

Tracey 1:01:10
And I get people all the time with a fist might be a hand or wrist. And literally I’m looking at them. I’m trying to think they’re like, hey, try this. And over time, it’s like, I may shock myself, but I’m like, oh, it actually does work. But it’s just the process of figuring things out and how the body works, how the mind works, and just try it out, figure it out and make it work. It works at the end of the day.

Bill 1:01:34
You’re the worst kind of person, how did you just did it, you’re the worst person. I disliked people like you because sometimes, especially if you made that perfect meal, and I want it again, and I want to taste it again. And I want you to take me back there and you cannot take me there it’s like damn Tracey come on get back there you know I love what you’re saying your reframe is amazing your reframe like, it’s a pretty dramatic thing that happened to you living with it every day.

Bill 1:02:09
It’s not something that we’re going to wake up with, and it’s going to be gone, it’s not going to go away. The fatigue is going to be different from now one of the your abilities are different from now on your your your time has shifted and changed, you know the times that you’re able to be up and the compared to the times when you’re sleeping, everything has changed.

Bill 1:02:31
And yet you’ve taken it as a opportunity to get more life experience so that you can relate to more people and help more people. And it seems something similar to how I ended up becoming a podcast host, you know, and deciding I’m going to do a stroke podcast.

Bill 1:02:51
The guy before stroke, had no idea what a podcast was, and would never have bought a microphone and put himself out there and made an effort to meet people from all around the planet and learn all these amazing things from my 137 guests so far, and then put it out there and create something that is actually making a difference in the world.

Bill 1:03:13
And also, I found that it’s honed my purpose, and it’s grown my passion. And because of it when I’m feeling really really shitty and really, really having a tough week. I don’t think I’ve ever canceled on somebody who has recorded a podcast with me and had to reschedule because I was too tired to bored too sick to whatever never did I cancel it.

Bill 1:03:40
I cancelled it because I couldn’t make the appointment time because something came up unexpectedly. But never ever for any other reasons. So it’s just, I’m relating to what you’re saying. And I’m reflecting my life back and I’m going man, I can see how I did that as well.

Bill 1:03:57
And now a lot of stroke survivors take it as a even if you don’t believe in God, in that sense that you do and that I do because I believe in God and I think I’m a Christian but I’m not a practicing Christian or anything like that. I still feel like somebody something gave me this opportunity to learn in a deeper way and to connect with people in a deeper way. And, it made it worth it made the stroke worth it.

Tracey 1:04:05
It is crazy, but it is. It’s crazy. But at the end, like I said, but you asked me earlier, you have those times it’s like oh, before I could do that. Yeah, I had and I have I randomly but it’s like, okay, you figure it out. But like say for instance my gym thing, okay, now 15 people are forced to pick up the weight for me. So get over that I’ll be they’ll be okay.

Tracey 1:04:47
So those things like that. We may say, Oh, I used to do or I could do or what if I or Yeah, but all right right now we’ll figure out how to make your work at With us figuring out how to make it work, we’re gonna say, rather 137, whatever I mean, 1037 people to help them change their life, as to looking at how we operate and how we figured out how to keep moving about with the new norm of us now.

Nutrition advice by Tracey M. Brown

Ischemic stroke
Bill 1:05:19
As we’ve come to the end of this, I really want to touch on one thing that I think you’re going to be perfect at describing and telling us about is food nutrition, what is obviously important in the gym forever, right? It’s important because the way you eat the way you feel your body, it gives you suppose you get the results that you want to get after stroke, nutrition is also so important. What are the things that you will not eat that are out of the question things that you do not do? Because they will impact negatively on your ability to get better or recover?

Tracey 1:05:56
Well see, I can’t necessarily say that, I have so many things that I’m allergic to, so you can’t really use me. So like, I’m allergic to tomatoes, corn, whey like all of these things that so many of those things, especially whey is huge in the fitness world, it’s like that. So always have to look for other supplementation to take to eliminate those things.

Tracey 1:06:17
But so I can’t say nothing necessarily. But I do have a model that I look for. And I always tell people you want to bind to within your nutrition to have a sufficient amount of protein, carbohydrates, and vegetables. Like everybody looks at these things as carbohydrates are negative, figure out what your actual goal is.

Tracey 1:06:36
And you got to figure out what works for your body. So carbohydrate is not a negative in the sense of you know what your goal is, my goal is because my metabolism is so high. And I’m constantly working out constantly doing many things like that, I have to take in a higher portion of carbohydrates than anything in order for me to maintain my body stature.

Tracey 1:06:53
So another person in a sense of you may be trying to maintain lose weight, or just be healthy overall, then I’ll put you, I’ll give you a standard base as to have a sufficient amount of protein. And then for a person that doesn’t want to be technical with counting calories, I tell them look at a smaller plate, look at a softer plate and have your portion of your protein in your palm size of your hand.

Tracey 1:07:16
Having your carbohydrates being coming down to the bottom part of the palm. And so many people say but I’m still starving, okay, to open up your whole hand open up your entire hand, that’s your vegetable. So your vegetable being your nutrient of your grains and everything that your body feels and feeds itself off, there really shouldn’t have a negative effect to the body.

Tracey 1:07:34
I don’t know anybody that can’t eat vegetables, but there’s so many people that may not be able to eat beef, chicken, pork, whatever those things that so you look at their protein, okay, we’re going to do that as monitor your protein here that carbohydrates, so many people can’t do so many of those carbs so that we looking at our body does need that to sustain extra energy and things like that.

Tracey 1:07:53
So we’re looking at the smaller portion there. Now your vegetable who in the world can’t eat a vegetable? So there’s so many people that don’t like the vegetable. So people say, I was so hungry, so I needed more carbs. Okay, what was actually your fitness goal here, you didn’t need more carbohydrates you needed to portion everything else up correctly.

Tracey 1:08:11
And instead of a lot of people do the thing where it was funny, because somebody just said it to me the other day, I’m not sure why I’m not losing weight, I do good, I eat one meal a day and keep going Hello, the metabolism does not work like that you’re eating one meal a day, it’s like your body’s saying you’re not feeding me at all, because your body does not know, it cannot recognize when the next time you’re going to feed them.

Tracey 1:08:31
So what they do is they take that one meal, hold on to that and say, Hey, I don’t know when the next day you’re gonna feed me. So instead of your metabolism working up and say, Hey, you got to feed me at 10 o’clock, you got to feed me again at one o’clock, you got to get at five o’clock.

Tracey 1:08:41
And habit metabolism works is it revs up to say, you’re gonna beat me at 10, I got to rev up and get rid of this energy so I could take in this field because you got to feed me again and one, then you got to pick me again and five, I got to read this up, get rid of this energy, they’re taking this meal at five. So that right there is helping to metabolism where this other person that thinks my one good meal a day is going to help me and I should know your body says I don’t know when you’re gonna feed me.

Tracey 1:09:01
So your body’s holding on to that your body stores that and then now turns into fat because it’s feeding off of that for 24 16 hours based on how long or how long you go without feeding your body and meal. So really, I can’t really use myself because and I’m just as natural, it’s easy for me to think about fitness. So everybody is different. But with anybody out there, just do a moderate amount of carbohydrate, protein and vegetable and whatever your goal is, as far as before your body goes, just try to do that.

Tracey 1:09:30
Eliminate a bunch of processes, especially if you are a person who had health issues with stroke, high blood pressure, sodium salt, things like that. You definitely want to keep that under control. Stay away from your processed foods and things like that, that are not natural to the body.

Tracey 1:09:44
And then another tip to be something I always tell people, the thing to look at when you’re looking at service is people say, Oh, I did good. This only has six grams of sugar. But how many servings Did you eat because that’s six grams of sugar per work service. And that one server probably was for us. 24.

Tracey 1:10:00
So now you have six times 24. So things like that people don’t take into consideration. That’s nutritional facts, they give you an event as per served. So when you’re doing something that’s already processed or packaged like that, that’s how you can pay attention. Just just being aware of the things that you’re putting in your body that are natural and that are not needing.

Bill 1:10:17
Eat fresh. Eat what’s in the grocery store, in the fruit and veggie section.

Tracey 1:10:24
Yeah, it’s the outside. So the thing we used to and I actually, that’s funny, I used to do grocery store tours for people to grocery store terrorists to teach them the correct way to shop. And we literally stayed around the outer edge. So the best way to shop is the outside going through the aisles, so you have all your processes that they like that that are not natural to the body, and most people don’t pay attention to how they take their consumption. And that’s when they end up having the issues.

Bill 1:10:47
Yeah, this has been a really high energy. Episode, thank you so much. I felt like you, I felt like you’re a breath of energy, like you’re just this whirlwind of energy and containing you is going to be almost impossible.

Tracey 1:11:04
I know. It’s horrible.

Bill 1:11:07
And I’m not saying from that person, it’s not horrible, it’s a great thing. Because it’s a great demonstration of what is still able to be done. Like, you’re still able to experience all these downtimes and struggles and all that kind of stuff. But be yourself, you’re still able to be yourself.

Bill 1:11:25
And that’s really important to demonstrate that being yourself doesn’t mean that you must go to the gym at 4am. It doesn’t mean any of those things, it means that you can be flexible and adjust everything in your life and still be you and not really have a massive impact on how you identify in the world, you can still identify as Tracey, the person who’s always been full on energetic, always gone to the gym, always helped people and they are here. You’ve just reframed that and change that and made it a little bit different.

Tracey 1:11:58
Well Bill, I had took me a minute to learn that I needed to just reframing that change because I can’t, I did find myself going back and forth. Like I used to then it was like, okay, that’s realistic right now. So you can still do this, but just change it up a little bit so it did not happen overnight.

Bill 1:12:15
Yeah, understand? Look. Thank you so much for being on the podcast.

Tracey 1:12:19
Yes, thank you for having me.

Intro 1:12:26
Discover how to heal your brain after stroke, go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:12:52
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 1:13:15
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:13:30
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:13:54
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The post 137. How A 12 Inch Blood Clot Caused An Ischemic Stroke appeared first on Recovery After Stroke.

]]>
Tracey M. Brown was fit healthy and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected. Tracey M. Brown was fit healthy and had spent 20 years of her life taking care of her body and working out in a gym, an ischemic stroke is the last thing she expected. Recovery After Stroke 1:14:21
136. A Successful Solution To Leg Spasticity https://recoveryafterstroke.com/a-successful-solution-to-leg-spasticity/ Sun, 07 Mar 2021 14:00:00 +0000 https://recoveryafterstroke.com/?p=5923 https://recoveryafterstroke.com/a-successful-solution-to-leg-spasticity/#respond https://recoveryafterstroke.com/a-successful-solution-to-leg-spasticity/feed/ 0 <p>Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/a-successful-solution-to-leg-spasticity/">136. A Successful Solution To Leg Spasticity</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem.

Social:
www.instagram.com/sarah__nickel/

Highlights:

00:48 Introduction
03:06 What happened to Sarah Curlee?
10:49 Dealing with spasticity
17:02 Leg Spasticity lead to amputation
21:10 Sara Curlee’s life after amputation
28:19 The birth control factor
33:56 Overcoming difficult times
43:43 Sharing your story
54:25 Helping other people
57:42 What’s in store for Sarah Curlee
1:04:51 There are better things to come

Transcription:

Bill 0:00
You made a decision to have the amputation though, like how do you make that decision? How do you make such a serious decision to have part of your body removed? How do you get to that? I imagine, was it a quick decision?

Sarah 0:18
It was a really quick decision. It was like instantaneous, like, I mean, like I woke up my foot start spasming in this hard cast and had to deal with it for so long. I was like I’m gonna cut it off. I didn’t do it quickly.

Intro 0:34
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction – Leg Spasticity

Leg Spasticity
Bill 0:48
Bill from recoveryafterstroke.com this is Episode 136 and my guest today is Sarah Curlee. Sarah experienced a stroke at age 27. That might have been caused by birth control, or a hole in the heart, also known as a PFO. And a few years after the stroke, Sarah decided to have her foot amputated.

Bill 1:11
This is a fascinating interview. So make sure you listen to the entire interview and get to the very end. Now, if you enjoy this episode, and you think others should hear Sarah’s story, please share it on your favorite social media platform. And also leave the recovery after stroke podcast, a five-star review on iTunes, or your favorite podcast app.

Bill 1:37
And if you’re watching on YouTube, click the thumbs up button and subscribe to get notified of new episodes. By doing this, you will make it easier for other stroke survivors to find The Recovery After Stroke Podcast and it may just be making huge difference for them, especially if they’re in that early phase of stroke recovery where they’re feeling alone, and like nobody understands them, and like they don’t know anybody else who’s been through what they’ve been through.

Bill 2:10
So it would be very much appreciated. If you did leave us a five-star review so that the show can get ranked higher. And also so that other people can find it. Now, thanks so much for listening to the podcast. And for encouraging me to get to Episode 136. It’s a lot of work, but when I meet amazing people like Sarah, it makes it all worthwhile.

Bill 2:37
While the more while and when people reach out and tell me how much they enjoyed a particular podcast or a particular episode, it really makes the whole thing even more worth it. So thank you for being here and listening. Thank you for the amazing feedback. And now it’s on with the show. Sarah Curlee, welcome to the podcast. Thank you so much for being here. Tell me a little bit about what happened to you?

What happened to Sarah Curlee?

Sarah 3:07
So I had a right hemisphere stroke in August of 2013. And I kind of wanted to know if you’ve ever heard anyone else have this backstory just because that’s kind of why I want to do this because it’s weird. So no one else has ever heard of this happening before. So please let me know if you know someone who’s got this.

Sarah 3:27
So the stroke was on Monday, I was at work. I was caught very quickly. Luckily, I had a friend come up and talk to me. And I thought I was answering him but apparently, it wasn’t. And then he walks off and I’m like, dude, like where you going? We’re talking and then comes back with like a small army of people and like they sit down with me and they get me to stop working.

Sarah 3:46
And like, apparently my face is like really droopy? I don’t know, no one took a picture. So I don’t know what I was saying. I don’t know what prompted and all just like, everyone just go full like, get her to the hospital mode. But I was lucky, and I got to the hospital within about 30 minutes of the stroke onset.

Sarah 3:49
I got TPA. So in the doctor’s words, they took the blood clot size from a 9 out of 10 to 6 out of 10 when I had the TPA, and then the neurosurgeon removed the blood clot later that day, and I remember waking up on the operating table fine I was totally okay.

Sarah 4:31
Like I remember asking the doctor questions. We’re like, hey, like what’s going on? Like, if you clued me into why I’ve been here all day, that would be really great. And the doctors just like kind of stared at me and didn’t really know what to do with that because apparently it’s not common first stroke survivor to wake up, like fully cognizant.

Sarah 4:49
And so I was on a Monday like I said, and then for the Tuesday and Wednesday, we did all the tests. We did the push-pull tests, we did all the cognitive tests which speech was fine, everything was fine. Like I passed every test with flying colors. And I remember like EMT would pop their heads in and they’d be like, are you really a stroke survivor, a young stroke survivor who’s fine? Like no one could believe it.

Sarah 5:17
So I was out of the ICU by that Wednesday into the general ward. And then I left the hospital on Thursday. There’s like nothing. There’s no rehab you ever heard of that before?

Bill 5:31
Never heard of that before. So anyone who is listening to this episode, whoever is on Instagram, however, is anywhere in social media will do us a favor. Get in touch with Sarah, at Instagram, and let her know if you’re one of those people that had a stroke and then woke up and went home and everything was back to normal.

Sarah 5:57
Well, not back to normal, but we thought it was gonna be I was supposed to be okay.

Bill 6:05
They missed, your diagnosis wasn’t complete, and then they sent you home. And you missed out on all of the opportunities to go through rehab and all those types of things?

Sarah 6:15
Yeah, I never got any of that. Um, my brother’s actually his wedding was like a week later, I went to that I was in it and everything. And then, so everything was fine. And then I got doctor permission to start working out again two weeks after my stroke, and he had no reason to say no.

Sarah 6:34
So I started kickboxing again two weeks after my stroke. And then it took about two or three sessions before I started, actually, I am saving my foot and that’s why we’re talking because I am TMF. I will get to it at some point in this but my arm was actually the first one to start to, like feel residuals, like, I’ll hit the bag, and my left arm was dragging, I described as like having a bunch of tiny little rubber bands just like holding it back.

Sarah 7:00
And so I started working again, about a month after my stroke, again, no clue what was going on. I met analytical chemists. So like, I reviewed that all day. So I’m at a computer a lot. My hand was not working for the typing or anything like that. So I just stopped typing with it. Like I just stuck to my right hand.

Sarah 7:22
I went and I saw, I had tons of follow up appointments to like figure out what caused the stroke. Birth control and a hole in my heart are the two main contributing factors is a PFO, PFO got fixed and can’t be on birth control anymore. So theoretically, we should be fine in that aspect.

Sarah 7:43
But I remember showing everyone my hand, like, I would play piano like I do like piano. And I like, it doesn’t do it anymore. It did it better back then. But I’d be like, do a little piano was like slowed down quite a bit. And like my neurosurgeon like literally shrugs his shoulders.

Sarah 8:03
He’s just like, Oh, okay. And then I had another follow up appointment with my GP that I was assigned. And by then my foot did start to take over, my foot started to, I don’t know how to describe this in words without having a visual. So for the podcast sake, supposed to be flat, it started to turn on its outside, and then turn it inward, and then my toe is a hammer, so like becoming a clubfoot.

Sarah 8:31
And my ankle would start to give and it would start to give. So whenever I saw my GP, we focus mainly on that because I couldn’t really not walk, like I needed to be able to walk, I could function without pain coming into walk. So she actually referred me to an orthopedic surgeon.

Sarah 8:50
And I’ve met with him. And he wanted to do surgery on me. I mean, that was the solution to fixing the foot and we did some rehab molded the section over him, but it’s in physical therapy in the meantime. Because it spasming like it was like a foot spasm like all day every day, like constantly and so it took about a year before I finally walked myself in stress fractures.

Sarah 9:14
And I’ve been a walking cast. I was like, alright, let’s do surgery. Let’s do it. It’s gonna fix everything right because Google even said that I was gonna fix everything every other orthopedic surgeons that it was gonna fix everything I was alright, well, let’s do it. That’s fine. And then I’ll be okay. And I wasn’t at all actually made like 10 times worse.

Bill 9:32
So the surgery made it more painful and more?

Sarah 9:39
Yeah. It made it way worse. I’ve never really found a good way to describe the pain but it hurt. And then so what he did was to help control the spasticity and this one I don’t know that’s what it was yet. I hadn’t had a diagnosis yet so I haven’t even seen a neurologist yet.

Sarah 10:00
To control the specificity, what he did was he cut the tendon that goes down the outside of my left leg and cut it into reattach half of it where it was on the outside of my foot, and then took the other half and attached it to the inside of my foot to help like straighten it back out.

Sarah 10:20
And then he did that same thing with the tendon going down the front of my leg, cut it in half, put half of it backwards, where it started and the other half on the inside. And so I woke up from the surgery and hard cast and as I looked down, okay, okay, this is okay. And then a spasm really badly for like, four or five months.

Dealing with leg spasticity

Bill 10:50
What’s that like? Because people go through this and there’s not a lot spoken about what it’s like to feel spasms and to feel spasticity. How do you cope with it for four or five months after you thought you fixed it? What does it do to you emotionally and mentally?

Sarah 11:07
It’s demoralizing. I mean, it was I don’t think I coped with it at all. I mean, physically, I would take my toes to the hard cast to try to get to stop spasming mentally, and emotionally. I don’t think I ever I still, to this day I’ve really processed how much pain it caused.

Sarah 11:29
But I do know, I woke up in spasm and I was like, I’m gonna cut it off. Like, it’s just gonna have to go. It was like, I mean, everyone at this point has had a muscle spasm in their life. Imagine that like all day, every day, 24/7, 365 like, you can’t get it to stop. You don’t know why.

Sarah 11:50
And so finally, the hard cast came off, and the orthopedic surgeon saw my foot and saw that was actually like back to being crooked. And then I got my neurologist referral. So that’s when I found out that it was spasticity and dystonia, those are my post stroke diagnosis.

Bill 12:09
I’ll give you a little bit of a, I did get misdiagnosed or not treated properly, I felt after the second time my brain bled, so it bled in 2012 in February, and then it bled in March. And in March, I went home, and I didn’t know who had visited me, I couldn’t type an email, I couldn’t finish the sentence.

Bill 12:37
You know, I was getting stuck with words, I couldn’t drive, I couldn’t do anything. I was extremely fatigued. And the only thing I knew to do, because I had been seeing a counselor before that was to go and see my counselor and continue those appointments.

Bill 12:53
And when I got to the counselor, I think it was about a month after I’d been discharged the second time. My counselor, my psychologist said, have you seen a neuropsychologist? And I said, What’s that? Like I don’t know what that is. And she said, well, it’s somebody that’s going to assess you to see where you’re at cognitively and what you can and can’t do.

Bill 13:17
And I said, oh no I didn’t know that they existed. All right, I’ll go and we tried to make an appointment and the appointment. It took about six months to get an appointment with a neuropsychologist because, again, I didn’t realize that I could pay upfront to go and see somebody instead of waiting through our public hospital system to get a referral and go see somebody, but didn’t realize that I could just go and pay.

Bill 13:43
So we waited, so in that time, I was zoned out, I was zonked out, I didn’t know what was happening to me most of the time, had a lot of fatigue. I had a lot of spaced-out moments where I didn’t know where I was in the world and what was happening. I was kind of in this kind of like a drugged phase of my life, like it was really bizarre.

Bill 14:07
So that’s the most that I can relate to what you’re saying that you went home and everyone thought, you’re perfectly fine. Whereas when you went back to kickboxing, and all that kind of stuff, I went home and they thought I was perfectly fine. They didn’t refer me to anybody.

Bill 14:23
But I struggled a lot with just being normal and being able to be in the world. So I think that’s part of why I do this podcast. It’s so that other people whose loved ones have had a stroke and when you’ve had the stroke you’re not the one that can make the decision the rational decision or the correct decision about your health and well being.

Bill 14:48
So that loved ones or caregivers can perhaps stumble across one of these episodes and go well I need to ring this person or I need to follow up on this. I need to do that for my loved one. So is that similar to how it happened to you? Do you feel like they just, you kind of slipped through the cracks and missed an important conversation somewhere?

Sarah 15:12
Yeah, thats probably the best way to describe it. I mean, once you’re out of the system, at least where I was living, once I was on a system I was never able to get in. Like, I never. I mean, I told doctors constantly what was happening, and I was constantly looking for questions.

Sarah 15:31
And I was actively seeking out answers from the people that I thought had the answers, and no one could ever tell me what was wrong. Like, no one could ever tell me what to do. I mean, they were all more than willing to open my foot back up, and keep doing surgeries on it. But every single one, I gave them the same questions like, Can you take the pain away? None of them said, yes. So I was like, I’m not doing that again. I’m not putting myself to that kind of pain again.

Intro 15:59
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, or doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 16:23
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

Intro 16:43
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

Leg Spasticity lead to amputation

Leg Spasticity
Bill 17:02
And you made the decision to have the amputation though, like how do you make that decision? How do you make such a serious decision to have part of your body removed? How do you get to that? I imagine was it a quick decision what was that like?

Sarah 17:19
Oh yeah it was a really quick decision. It was like instantaneous, like, I mean, like I woke up my foot started spasming in this hard cast and had to deal with it for so long. I was like I want to cut it off. I didn’t do it quickly, so my stroke was in August of 2013. And my mom was diagnosed with cancer in October of 2013. So she had to fight for her life and all that.

Sarah 17:47
And I wasn’t gonna put myself in a position where I could possibly ruin my life and not be able to get to her whenever I needed to because we lived two states away. So like I wasn’t gonna venture down that road until I was ready until she was ready. And ultimately, what made her ready was she did pass away in December of 2015.

Sarah 18:10
So she passed away in December 2015. So in between September ish of 2014 and December of 2015. I did all the research I did the botox that is apparently very common, it didn’t work. I talked to all the orthopedic surgeons, they all gave me the exact same answers.

Sarah 18:32
I did a lot of research on amputation. And what was out there, and what all, I really want to know if anyone else had ever amputated because of something like that, and I couldn’t find anything. So I didn’t really have any knowledge base for if it would work. And it was a huge risk. And I knew the huge risk. But once she passed away, I went ahead and just blindsided my whole family and all my friends with the decision to amputate the foot.

Sarah 18:58
Because I didn’t talk to anyone about it. Like I didn’t tell anyone like I was supposed to be okay. Like I wasn’t supposed to have to be dealing with that kind of stuff. And like, I don’t share. Well, you’re actually the first person I’ve ever talked to about this seven years later. So yeah, yeah, so like, it’s just like seven years later just now and like actually, like sharing any of this.

Sarah 19:22
So I blindsided everyone, like, my whole family was just like, what, like, you’re gonna do what? And I mean, they were all supportive. They’re totally okay with it. And when she passed once my mom passed, and I got through all that. I got back into Nashville and actually met, I met someone at the gym and we bonded through our crutches.

Sarah 19:47
Because I was on crutches at that point in time just because like I was on and out of crutches I was on and out of air cast I was in and out of AFO I was doing all that. And he was like he told me his story and I told him my story and he said he’s like, but I’m gonna cut mine off. I’m like, who, what, when, where, why and how I want one.

Sarah 20:05
I was like, I’ve been wanting this for like over a year now. And he gave me his doctor’s name and number. And this was like two seconds after I got back in Nashville life going again. I met the doctor, and he was a great guy. He’s a vascular surgeon. He gave me my options.

Sarah 20:21
And it just everything he was saying made so much sense. And everything was just so aligned with what I was wanting out of my life, I wanted my life back. And, it is unfortunate that my mom had to pass away to be able to start the journey. But once she did pass away, I was able to start looking for ways to get normal again, to get happy, again, to get out of my depression, funk and just the hate of life.

Sarah 20:50
But I met with the prosthesis. He actually runs a charity out in Nashville. I got very lucky with that as well, I talked to him, I was like, can I wear heels again? And I was like, can I run? Not again? But can I really don’t because you always want we can’t have you know, I was like, I can’t run now I want to he unfortunately remember that, that I asked that question and made me run.

Sarah 21:15
I amputated in May 9th of 2016. And, in hindsight, there was a lot of morphine involved in my happiness at the very beginning, but I had no pain, like I was pain-free. Like I was just like, so happy and so relieved. And like, once the morphine were off, it took a little while to get back to that point.

Sarah 21:36
But like I was just so relieved that I didn’t have anything spasming like the pain was gone. Like that you have to do inpatient rehab for two weeks, whenever you amputate. That’s the first time we ever even focused on my hand. Like, I was so ready for the amputation. Like they didn’t have anything they had to do with me for the foot. Like I was already like, Pelican, like Flamingoing whatever.

Sarah 22:00
More often not anyways, like I already took myself off on my left side as it was so I was so prepared for it just naturally, that we spent the whole time focused on the hand and working with it and trying to figure out how to, like get it stretched out and how to figure out how to like, get it functional again, if we even could. But yeah, it was the most insane I think I’ve ever experienced in my life.

Sara Curlee’s life after amputation

Sarah Curlee
Bill 22:23
Wow. It’s absolutely fascinating that the thing that has made a difference to your life more than anything, after all these experiences that you’ve had is the amputation. And that improved your quality of life, I’ve got a friend who is double amputee.

Bill 22:39
And he was about 19 and experienced a condition that was called I can’t remember right now, but I will remember it in a little bit. And as a result of meningococcal, and as a result of that, the bacteria attacks, the extremities of the limbs, he’s lost a couple of fingers, and it impacted one of his legs severely and he had to have amputation.

Bill 23:09
And then it impacted his other leg as well, but not severely enough to need an amputation, but severely enough to cause a lot of pain and a lot of problems. So you had one leg, which was amputated, and had a prosthetic and the other one was just really painful and not really supporting him and able to allow him to get back to his life.

Bill 23:37
So he decided that he would also have that one amputated. And now he’s a double amputee at the legs. And as he arranged it so that he was amputated, his leg was amputated in the same spot, so that he has really good balance. And now he’s able to use amazing prosthetic limbs and walk properly and have no difficulties getting around and being active, and playing golf and doing all the things that he loved to do.

Bill 24:12
I interviewed him for the podcast a few years ago. And what I’ll do is I’ll put a link in the show notes of the podcast episode with Mike Rolls. And if anyone’s interested and curious about Mike, they can check him out at mikerolls.com.au. But all those links will be in the show notes.

Bill 24:39
He’s a fascinating guy and he does some public speaking and it goes around Australia teaching helping other amputees survivors and it just a great guys. It’s an amazing guy. Absolutely amazing. He was the first person I met who said that he was, you know, made the decision to have one of his own limbs amputated.

Bill 24:59
You’re the second person, so it seems like it’s probably rare. And it’s not many people doing that. But it’s great that both of you have had an amazing, positive outcome after doing something so drastic and what other people would say is really dramatic. And how could you possibly cut your own leg off?

Sarah 25:22
Yeah, it’s kind of interesting because I don’t have a percentage or anything, but a lot of empties are elective, like, a lot of us had something happen in life that we obviously didn’t want to have happen. And we had the choice of keeping the limb and keeping the lower quality of life or removing the limb and having a higher quality of life. It’s not as uncommon as I think most people realize.

Sarah 25:47
And I really realized that until I started meeting other amputees and they say, like, they could have kept their limb and they chose not to, it’s actually quite common, I actually know a double amputee as well. And he was born to a genetic defect. I can’t remember but he ended up amputated both of his legs as well.

Sarah 26:07
And his quality of life went through the roof as well. I mean, it’s kind of, it’s all about the mindset. You know, I mean, it’s, no one ever wants to have a stroke. No one ever chooses to have a stroke. So it’s a very depressing mindset. Like, it’s really hard to come back from it’s really hard to, to move on with life knowing what life was before. And it’s just not something that you would ever wish upon anyone. You’d never wished the invitation upon anyone.

Sarah 26:36
But if you choose to amputate, it’s just completely different set of rules on the whole. That’s in the power. Yeah, it is. It’s very empowering. It is. Yeah. It’s just like, when it works. It’s a huge muscle release. I mean, huge, huge commercial, and then you can move on with life and prosthetics are great nowadays.

Sarah 26:57
We’ve come a long ways from the wooden legs. So I mean, it’s just it’s so impressive. I have three feet now. Actually, I have one for heels because Aaron. And then I have one for like everyday usage, it’s got good ankle flexing. It’s so I do get like a bit of an ankle. So I have that kind of.

Bill 27:24
Movement.

Sarah 27:25
Yes, thank you words. And then I have a running blade. He did remember I asked about running. But actually after I amputated I started walking a month after my amputation and I started running two months after my amputation, I ran two half marathons in a Ragnar all within a year and a half of amputating I have confirmed I’m not the biggest fan of running.

Sarah 27:49
And I actually did a lot of damage to my upper limb. Like my arm, I lost a lot of more mobility that I was already losing. And it’s just so it’s not worth it for me to keep running. I still use it at the gym a lot to like do like sled poles and stuff like that. And anything that requires like a little faster movement. But I don’t run much at all anymore. But I mean, it’s I couldn’t have ever done any of that with my real foot. I could barely walk without a cane and with my real foot.

The birth control factor

Bill 28:19
I get it, it makes sense. I totally get a well done for doing it and going down that path. Have you ever stopped for a moment to consider the birth control issue, I know that you’re about the fourth a woman or fifth woman I’ve interviewed who has seemingly been completely normal and healthy.

Bill 28:43
And at a very young age below 30 or even somewhere near 30 had a stroke. And the only thing that they could put it down to was that they were taking birth control. Is that something that plays on your mind? Is it a conversation that you’ve had with more people to get to the bottom of that?

Sarah 29:05
I think it is an incredibly important piece of information for everyone who’s ever going to because birth control I’ve got found I was like 12 all for the same thing that most people that age get brought on. I mean, I’m a I’m a preteen with hormones I get it’s just periods are incredibly painful.

Sarah 29:22
So they put you on birth control at such a young age. I was 27 I had the stroke. So do the math how many years it is I can’t remember. But like, and it’s just it comes with the warning labels, but we don’t know to read them. Like we’re kids. Our parents don’t know that read them because they just want us to not be in pain once a month like and they’re happy at the results that they see.

Sarah 29:43
And obviously, we’re not trying to get pregnant if we’re on birth control. So like it has so many benefits, but you never realize that the risks are high. And as actually, there’s actually an episode of Oprah Winfrey Show I’ve never seen it but, she has like a ton of stroke survivors on her show all had strokes and their main reason was birth control.

Sarah 30:10
So I don’t, I used to know the percentage, I can’t remember percentage of birth control cause strokes, but it’s higher than it should be. And then having that hole in my heart as well, the, the general theory is that the clot started in my legs, and instead of going down as my lungs, like I should have it pushed through the hole and went up into my brain.

Sarah 30:34
And I mean, that could have easily been solved with a bubble test, so a bubble test is whenever they shoot sailing into your heart, and then as the sailing stays where it’s supposed to, you don’t have a whole of the sailing moves into another chamber, you have a hole, but I’m just like, at least like, do some, like, check a poor little girl who’s about to start on birth control and make sure that she doesn’t have any kind of pre-existing condition that could cause further problems down the road.

Sarah 31:06
It’s just, really unfortunate how much it’s not talked about. I’ve never really talked to him about it. But I don’t really know how to talk to I don’t know who to talk to, I don’t know how to talk to people in general.

Bill 31:19
You’re doing all right for somebody who doesn’t know how to talk to people.

Sarah 31:23
Yeah, I wrote up a rubric. So I have my talking point.

Bill 31:29
That’s all good. Look, I thought I’d ask just, I’m just so stunned about it, I keep meeting more and more women who have said the same thing. And I just, I can’t believe it, I just cannot believe it. And I figured that somebody needs to do something about it or say something about it.

Bill 31:44
And I’m very surprised, I didn’t know that there was an Oprah special on it or something like that. And that was done, though. Just Google that here. It was done in October of 2011. That was when she made a point of it, and did this particular show about it. So it’s been a while.

Bill 32:07
And I dare say that there wouldn’t be too many people moving to make any kind of change, because the perceived benefit of birth control, I’m assuming in society is far greater than the perceived risk of stroke. And even though people who have a stroke and were on birth control, it’s still not definitive that they had the stroke because of the birth control.

Bill 32:34
And that’s how they get out of saying, well, lots of things cause strokes, we don’t know, and not necessarily the birth control. Although there is a warning label on birth control that does say it does increase the possibility of stroke.

Sarah 32:49
Yeah, and I mean, every environmental factor can be thrown into what can cause a stroke, a lot of strokes are perfect storms, I mean, you have everything fall into the right spot to have a stroke. Like if we go down farther down, like dehydration was a concern of the for the stroke.

Sarah 33:08
But they tried to say kickboxing was part of the reason I had a stroke. Like there was a laundry list of reasons why I possibly had the stroke. It’s just those were the top two. But you’re right. I mean, with so many other different factors that can be put that can play into having a stroke, you could never pin it on just birth control.

Bill 33:25
No, you can’t.

Sarah 33:26
But it really should come as a red warning label instead of like a tiny like in the middle of a word. warning label.

Bill 33:34
Yeah, I agree with you. So your mum passed away at the same time when you’re recovering from stroke when you’re suffering and struggling through all these other issues as well, that I’m gonna make a bloody obvious statement. But obviously, it was hard. I know it was hard.

Overcoming difficult times


Bill 33:56
How do you get through it though? Like how do you overcome all the shit that you’ve got to deal with at the same time in your life and you’re fairly young and like most people who are below 30 don’t have a lot of experience in overcoming such emotionally difficult times as well throw a stroke into the mix. But how did you get through what did you need to do to overcome and get through?

Sarah 34:24
I kept busy, I cried a lot. I have a dog. I know it’s not the same but my dog is like, literally the definition of an emotional support animal. Like she was like the sole reason that I ever even remotely wanted to continue trying. Because I mean my mom was failing daily.

Sarah 34:51
And she was actually the only one I ever really talked to about anything. So like it was really great to have her support. So just sit there and talk about our failing bodies and like so I at least had her to talk to about it. I’m gonna talk to you what else about it, especially my family, I don’t want them to know what I was going through whenever we get hurt or worry about, I just a lot of crying.

Sarah 35:14
And I’d be that threw myself back into work, I was working like 70 hour day, that not days, what, like 70 hour weeks, whenever I was needed, I would just work a lot, I would try to get out there and be normal, I stayed active in the gym for sure. To this day, the gym is easily like my happy place.

Sarah 35:36
If I’m on the top bowed mountain, or headed to the top of a mountain with with Caya. I just I tried not to think about it failed more often than not, but try not to think about it. And pre amputation, I didn’t have any other option, but to just ignore it as much as I could, because I had no solution to the problem.

Sarah 36:03
And then once I amputated, or once well once my mom had passed once I amputated i was able, that’s whenever I was finally able to figure out how to be happy again. But I definitely spent the two-ish years just in a funk, like depressed, anxious, like I didn’t know anyone to talk to had no one to like, tell what’s going on didn’t even have an answer to what was going on.

Bill 36:39
You seem like a pretty outgoing person I can’t believe you didn’t have anyone to talk to Is it because you chose not to? Or because you’re not that kind of person. How is it that you didn’t have anyone to talk to I find that amazing that people say that I get that they say it, and I understand how they say it and how they might get to that point.

Bill 37:01
But I find it fascinating that of, you know, you’re one person, and you’re surrounded with people wherever you live, unless you’re in a remote location. And you felt like you had no one to talk to about it? Was it just something that you imagined that you didn’t have anyone to talk about?

Sarah 37:22
I isolated I’m not gonna say willingly, but it is probably more subconscious than anything. my significant other time was a rock, he was great at the whole thing. The stroke ended up causing a lot of arguments, because he wanted life to go back to normal.

Sarah 37:40
And again, I was supposed to be fine. So life was supposed to go back to normal. So a lot of arguments about that, because I couldn’t go back to normal. I couldn’t go back to like being a social butterfly while I was overseas, like going out, like going out places with him and like doing all these things that we were doing pre stroke.

Sarah 37:56
So I followed up on that end, and then the stroke ultimately ended up ending us because I kind of talked to him about it and then work again, I was supposed to be fine. So no one knew what was going on. And once I there was actually one time that I had a cane, I love my cane, I think she’s awesome.

Sarah 38:19
And I would break her out whenever I needed to back when I had my real foot because it would hurt. And so there’s one day I needed my cane back. And so I broke it back out and I was at work with it. And like one of my co-workers like literally pointed at it and laughed.

Sarah 38:35
Like, actually that day, I just found out that my mom got diagnosed with stage four cancer like so it was a really bad day. Like I didn’t leave the bathroom for like two hours, like I was in there crying for like two hours. But like I would hone in on things like that. And I would hone in on my behavior and my attitude and how like I was just so unhappy. And I would get snippy because of it.

Sarah 38:59
And like so I just opted to not talk to anyone like it was easier that way. It was easier to not share than it was to share, especially since I still didn’t know what was wrong. I still didn’t know how to fix it. And I wish I had sought out answers on how to make it better before knowing how to make it better. That makes sense?

Bill 39:23
Makes sense, complete sence. And that’s why I question you on, how do you feel alone and I kind of knew what you were gonna say but people listening and watching this are gonna definitely feel alone and they might recognize something in you that they haven’t recognized in themselves.

Bill 39:42
And they might be able to say, okay, I’ve got to do something about this situation that I mean, and maybe the feeling of being alone is just a creation in your own mind and I get how rude could somebody possibly be by pointing at your cane and laughing.

Sarah 40:03
The rudeness was not intended, I know that.

Bill 40:06
It’s still rude. And, that makes sense that you would retract from interactions with people because you’re trying to protect yourself and you’re trying to keep yourself from being further emotionally impacted. Not only you’re going through a stroke, your mum’s unwell, and there’s people laughing at your cane like ridiculous how stupid?

Sarah 40:34
Yeah, in hindsight, actually, if I had known it was gonna be like a social study amputating my foot, I really would have documented this better. But back when I was in my air cast, strangers would walk up to me like all the time, like, Oh, my gosh, what happened? What did you do? How did you hurt yourself? And I never had an answer to that.

Sarah 40:51
I was always like, I had surgery. But no one ever cared about my answer to is they always wanted to tell me their story on how they ended up in air castle how they ended up with two air casts how they like, fell off a mountain skiing and how they ended up breaking both their feet.

Sarah 41:03
Like everyone just wanted to tell me their story because it was so relatable, right? And I amputated the foot, very rarely do I get asked what happened? Like, more often than not, I get people who stare at me for sure. And it’s kind of funny, because now I want to talk about it.

Sarah 41:17
I’m like, Oh, ask me I want to tell you, I’m ready to tell you. But I wish I had used that time and that air cast as a chance to talk about it. Like I wish I had been honest and been like a stroke. Like, I had a stroke. And I’m not like, I can’t walk without this or I can’t walk out the AFO and I could have at least practiced on strangers.

Sarah 41:42
What to say to people that I knew and people that I cared about. And then instead of I was pushing them away. Instead I was actually like avoiding them because I couldn’t talk about it. Like I really wish I had practiced on strangers I guess.

Bill 41:58
But now it’s a great thing to reflect on and to share now because people listening right now might go Okay, let me test out my sob story on somebody I don’t know and I’m never gonna see again.

Sarah 42:12
Exactly so random person in a grocery store and tell him your whole life. I mean, it’s good practice.

Bill 42:18
If they’re keen enough to ask, they’re gonna have to listen to the answer.

Sarah 42:24
That is true. I had to listen to their stories. They have to listen to yours. It’s true. Very true.

Bill 42:29
And isn’t it amazing that questioning is a way to open up an opportunity for them to tell you what happened to them so that they can get it off their chest. And they don’t really give a shit about you.

Sarah 42:40
Yeah. I would always say um, I would always say I’m just gonna like say like something funny. Like I saved a calf from a burning building or something like that, like some so I’ve never actually did it because I don’t know. I just I couldn’t ever get the words out because not that eloquent with words.

Sarah 42:58
But, but now that I actually tell the truth on the rare occasion, someone will ask me what happened to my foot more people ask me my hand in general, but like, I’ll always answer with I had a stroke. And that’s weird enough. Apparently. Everyone’s just like, Oh, I don’t know what that means.

Sarah 43:14
I was like, Oh, you were so young. I’m like, yeah, I was 27 when I had it, and then it’s just awkward silence. And then I walk away from the stranger. And but I practiced. So yeah, so I mean, it’s just such a strange answer as it is. So it never it very rarely leads to follow-up questions I love it when it leads to follow-up questions. And those are some of my favorite conversations. But it just doesn’t happen that often. So apparently, I had the weird story all along. I just never knew it.

Sharing your story


Bill 43:44
You should do just before my surgery, I was really eating really well. No sugar, no gluten, no dairy, no alcohol. And of course, when you go to a party and you’re not having any of that stuff, and people are offering you cake and alcohol and all that, they ask you unknowingly Oh, how come you’re not drinking? or How come you’re not eating cake or whatever.

Bill 44:10
And then I got to that point where at some stage I started telling them and they you could tell they regret asking me about 45 minutes later and their trying to be polite and not get out of the conversation. And they asked you had a stroke. Yeah, and I bled and and this happened and that happened and they cut my head open and they did all that stuff.

Bill 44:31
And people are just sitting there going geez I wish I’d never asked that question. They’re not gonna tell that their thinking that but they’re too polite to walk away and they’re people that I kind of know through other people. So it was you know, not the right time for them to walk away and get out of it but I didn’t do it to annoy them or upset them or anything like that.

Bill 44:55
I did them because I felt I think like you I felt like it was time to start sharing. I think I felt like they were old enough to have a stroke that people that were asking me, so maybe I was kind of raising awareness about it. And I wanted to tell them that I stopped smoking. And I wanted to tell them that I stopped drinking, because, like you, I did have the perfect storm, but I think I created the perfect storm myself.

Bill 44:55
So I did all these little things that did lead to that weak blood vessel in my head finally going, we can’t cope anymore, I’m gonna bleed out, you know. And then I started to take control back of my health and well being, and I was proud of that. So I wanted to tell people that that’s what I was doing.

Sarah 45:43
You should be proud of that. You have such a positive mindset as well, that’s so great. It’s hard to have a positive mindset after having something like that happen. It’s so much easier to just fall in a black hole.

Bill 45:57
Yeah, well, I did. I shared that story as well, on episode 100, I interviewed my wife, you know, and, at the time, a week or two before my surgery, her mom passed away. So we were going through her mom’s passing, and then we were preparing for the funeral. And at the same time, we were preparing for potentially life altering brain surgery.

Bill 46:23
And it was just a real shit time, in every way, shape, and form. And if you didn’t have a positive mindset, even, even in the midst of all the distress and the depression, and the anxiety and the you know, bad feelings and the bad emotions. If you didn’t have a positive mindset, I don’t know how we would have got through it.

Bill 46:44
We had two kids, you know, you can’t just collapsed in a heap. And it doesn’t work, there’s too much going on to do that. So what’s the solution? The solution for me was just to find ways to have a positive impact on my own life. And for me, it wasn’t an amputation, but I can so relate to what you said about how you chose amputation, it seemed like the harder path, but it was the path that gave you back your life.

Bill 47:13
And that’s kind of what I did, I chose what appeared to be like the harder path. And for some people, some people would appreciate this stopping alcohol is a hard path for some people. But for me, that was easy. Because now that that’s done, I can just go back to not having to worry about am I again, creating the perfect storm to have another stroke? And if I have another stroke, how much worse is it going to be than what it is now? Because it’s not gonna be better?

Sarah 47:45
How old were you when you had your stroke, or your bleed?

Bill 47:50
I was 37. You know, and working 16 hours a day and two kids and wife and mortgage and cars and all that shit, right? And then it was like, everyone I know, around me is doing exactly what I’m doing. Like they are a candidate for having the same experience that I’m having.

Bill 48:12
And maybe by me sharing my story, they’ll just pay attention a little bit and reconsider a couple of things on it. I don’t know what but maybe they won’t, but maybe they will. I don’t know. It’s kind of where I was coming from. And also, I was getting used to being public about it and getting used to my next phase.

Bill 48:36
Getting prepared for my next phase, which was to do the podcast and to do you know, recovery, stroke recovery coaching and to do YouTube videos and to do Instagram lives, you know, so it was kind of my proving ground. It was I got those suckers involved and practice my message or story or whatever.

Sarah 48:57
Yeah. And how long ago did you start this podcast? I’m trying to find out, I can’t really get an answer.

Bill 49:03
I started it in 2015. And I didn’t do a lot of episodes back then I was only doing probably, you know, maybe three or four episodes every few months. And it really ramped up in the last three years or so where I’ve been doing about an episode a week. So we’re on close to about doing 50 or so episodes a year. And at the beginning it was called the transit lounge podcast and I was just interviewing random people about different things that they ever come.

Bill 49:35
And then there was some cancer survivors and then there was a lady who overcome multiple sclerosis. And there was Mike Rolls who I mentioned earlier who had the double amputation.

Bill 49:49
So I was just interviewing people about having overcome things but then I realized that actually my real passion and my real community and the people that are related to who related to to me the most was stroke survivors. So I changed it about a year and a half ago, two years ago, and I called it The Recovery After Stroke Podcast. And, it took off from there.

Sarah 50:12
I’ve tried my hardest after my stroke to find something like this, or find a support group or anything like that. So I never found one. So what you’re doing is really very impressive. I mean, everyone has been through something like we’ve been through wants to find someone out there who they can talk to and relate to and know that they’re not alone.

Sarah 50:35
And it’s great that you have a platform that you’re reminding us and letting us all know that we’re not alone or telling us in the first place that we’re not alone. Because it’s a very, it’s scary in of itself. But the idea that you think that you can’t ever talk to anyone and have them understand what you’re talking about makes it scarier, trying to get life back on track. So it’s great that you’re doing this.

Bill 51:00
I was seeking out anyone near me that had a stroke, or I could relate to but the people I was meeting were all older than me. And then I did meet a few locals that were younger than me. And we kind of did relate. But then I think the main reason I did the podcast was so I can meet other people that I related to.

Bill 51:18
So I wouldn’t feel alone. And so I would feel like somebody understood me and knew what I was going through. Even though they were on the other side of the planet, it didn’t really matter. So now I’ve met 130 stroke survivors who have shared their story on the podcast who are, like me, similar to me understand me, and I don’t feel so alone. And when I reach out to them on Instagram and ask, you know, silly questions, I get a heap of answers, people respond.

Sarah 51:48
I love those answers. I love that you asked those questions. I’ve spent more time reading your comments than any other comments on Instagram.

Bill 51:56
It’s fascinating to me that people A would want to respond, and I’m glad that they do because it then makes Instagram worth being on. You know, just today, I put another post there and I asked, What is something that stroke caused that you would pay anything to make better or go away?

Bill 52:16
I’m really looking forward to what people have to say about that.

Sarah 52:20
I’ll answer it when we’re done with this.

Bill 52:22
And they’re already on there, you know, I only posted it 10 minutes before we got on to this episode. And they’re already on the leaving, you know, comments like neuro-fatigue, it’s hard to explain to somebody, and I guess to someone it sounds made up, but it’s very real similar to a migraine, I often feel like, I need to lie down in a dark room with no external stimuli to feel better.

Bill 52:46
People are just posted, there’s like, already 10 comments on there. And I just posted it 40 minutes ago, 50 minutes ago. So I love that I can do that. And I get a lot from it. But the people who comment get a lot from it. And I’m so glad that you’re one of them.

Sarah 53:04
Yeah, mine’s chronic pain, to answer that. I really wish the chronic pain will go away your questions. I mean, they’re just they’re such great conversation starters. And it’s this there’s a stroke survivor support group in Nashville now I actually found them because I ran a 5k for them after I amputated obviously.

Sarah 53:31
But it’s called Seriously Awesome Stroke Survivors. But she was Trista is actually, she’s never had a stroke. She’s just, few last podcast with Peter, he was talking about something that I can’t remember what it was. But it made me think of Trista. Oh, on how she’s never had a stroke. But she’s sitting there trying to help everyone who has and how she’s just like this most selfless person and like want to help someone which doesn’t actually personally know what they’re going through.

Sarah 54:01
But I met a lot of stroke survivors through them. But yeah, same thing. They were all older, I still never met many younger stroke survivors. But they were all such amazing people, though, it is great to be able to share the stories on a personal level. But that’s actually why I started my Instagram was to find other stroke survivors as well. So I think I guess I probably found you about a year ago. I just started on tiny change sort of recovering from a stroke.

Helping other people

Bill 54:25
Yeah, something like that. It makes sense. That’s when it kind of really took off. Peter G. Levine was Episode 135. So his the episode just before you, I just released that today. And it’s gonna go live. It’s live already. And he’s a clinical researcher, and he and his family and his wife and I don’t know how many people he knows are all involved in helping other people overcome brain injuries and recover from stroke and all that kind of stuff.

Bill 54:56
And I’m like, why would you do that? I think it’s so fascinating. That’s the path that they choose, and they go down. And when I met people like that in Melbourne in my hometown, I again didn’t feel like I was alone. Because there was thousands of researchers doing work. At these institutes and at these hospitals to help people like us. It’s such an amazing thing. I find it fascinating.

Sarah 55:25
I didn’t realize that until that podcast that, I know Australia had the Stroke Foundation, I follow them on Instagram, but I didn’t realize that Australia was so passionate about strokes and figuring out what causes them how many people better after them? And I don’t know if that I don’t know if the US has much like that honestly if they do I haven’t ever heard about it. So I think the US is still stumbling through most of it.

Bill 55:49
Yeah, there are a lot of researchers that are working and doing amazing work in the US. And especially the I think it’s the Heart and Stroke Foundation in the US that does really good work in that space. But there’ll be a ton of bodies that really focusing on neurological interventions, or how to help people having neurological issues, you know, what’s really bad about what they do, they don’t do a real good job of advertising themselves.

Bill 56:17
And of letting people know that they exist. Because they’re so focused on rehabilitation and learning new things. And, you know, discovering new discoveries, they’re not really good at telling people about the things that they’ve discovered. And when they do discover them, their version of Instagram or whatever is some medical journal that only doctors read.

Sarah 56:41
Yeah, trying to get through those is impossible, like, like, I didn’t even know what neuro plasticity was until, like, within the last few years. And that’s something that they’ve apparently known about forever. And they didn’t ever put it in an easily read Instagram post, like our attention spans are like, shorter and shorter, the more modern day becomes more overwhelming with all the information out there, our attention spans are too short to read that long post.

Bill 57:12
So that’s pretty much why I would say we don’t know about them. And, you know, I’ve never really been interested in neurological stuff until I had a stroke. And then I needed to know all about the neurological stuff. So I started to really focus and try and research but back then, when you and I had our stroke, it was early days, it was really early days, 2012 there was nothing around and I was looking everywhere for that stuff.

Sarah 57:39
I was too yeah, there was nothing.

What’s in store for Sarah Curlee

Bill 57:42
So that’s kind of what instigated me to get my act together and get the ball rolling on my podcast now I’m curious, though. How’s the future looking for you? What’s, you know what’s coming up, that’s exciting that you’ll be doing or going to continue to do how things evolving now.

Sarah 58:04
So I moved to Utah to do the things that I want to do. Nashville is great. And I loved it. It’s just like, I had to drive three hours for a hike and ABR Amputee Blade Runners were phenomenal in getting me up and running. But Utah has this place out here called the National Ability Center.

Sarah 58:20
And what they do is they work with people with disabilities or PTSD and help them either get into outdoor rec or get back into outdoor rec and so pre-stroke. I dabbled in snowboarding sucked at it dabbled in mountain biking terrified me. But now that I know that I’m poststroke and post-amputation like I can start doing these things and I’m like I want to go out and do this.

Sarah 58:42
And so actually the double amputee that I saw earlier, posted has experienced that and I already want to move out to this coast anyways because humidity is like the worst thing ever like Nashville has. So actually targeted Utah so that I could work with them and I started snowboarding with them.

Sarah 59:01
I found out I can’t do that because my upper limb but I got to try at a much cheaper rate than I would have if I had gone out and bought everything and tried on my own. So I also got to try mountain biking with them. Same issue with upper limb like it just since my left side so tight, everything that I do especially with an adrenaline rush like my left side like immediately like tenses up and then I just fall over.

Sarah 59:27
But I still get a trial this which is really fun. I went cross country skiing like week or two ago. That was really fun. I’m going to try that again because I actually I only fell because I really get excited and then I fall but like my strokes I was fine with that. So I’m excited to try that again.

Sarah 59:44
Hiking, I love to hike I love that I can hike again. My significant other and I we go on hikes as often as we can, you know seasons out here so like it’s not like just constant like rain or hot or like I just wanna go outside and play. That’s all I want to do that’s all I wanted to do, like I have two dogs now and I have my significant other, we just come out here we just go outside to play and we’re in such a great area for it.

Sarah 1:00:15
And the NAC is just like such a good resource to like, let me try it like, I’m gonna try Archery with them. I’ve never done it, but I’ve always wanted to try it. And so I’ll do that and like horseback riding and like all this stuff and like, my upper limb is definitely the constraints.

Sarah 1:00:30
But now that I have amputated my lower leg and remove that, I mean, there’s so many new things that I can do, like so many things that I can do. And the amputation itself is called ertl amputation, I guess I checked on this a little bit because I have had people reach out to me before about the amputation and stroke all that. So it’s an ertl amputation, it’s not conventional.

Sarah 1:00:54
So conventional amputation, they amputate the foot and they leave the two bones, the tibia and the fibula. And they just leave them free floating. So they basically are just there to like tear up soft tissue. So the ertl does is it takes one of the bones that amputated and it reconnects them. So they use tightline and reconnect them so I can like impact. Like I have a stump that I can just beat.

Sarah 1:01:25
And I actually literally had to beat it with like roll up magazines to desensitize it. But because of that, I can be more active than a lot of conventional amputees because I have that support in my stump. And with that, I’m able to go out and try all these things and not get like the like the skin breakdown as easily and not get the Phantom pains aren’t nearly as bad as they can be.

Sarah 1:01:52
Phantom Pain is a really common thing for amputees. I always feel the foot I’ve my toes are always tingling, it hurts sometimes if most part it’s just a phantom sensation. But the ertl helps avoid the phantom pain as well. Going off on tangents now.

Bill 1:02:09
You were just talking about why you’re so active and how that particular amputation is helping you because and you wanted to share that because people ask you about it.

Sarah 1:02:20
Yeah, I have had quite a few people ask me about amputating their foot because of their stroke. And I’m never like yes, do that. But I do share them my story because it’s not the perfect solution for everyone. And it’s not, I just got very lucky that my residuals were for the most part located in my arm and my foot.

Sarah 1:02:41
So like my left leg doesn’t move as well as it did, like I do have limited mobility. And I do have limited mind muscle connection, but it’s not as severe as my foot was. So I have had quite, so every time I talk to someone about it, I just make sure that they know that it’s not necessarily going to fix everything didn’t fix everything for me. But it did it would make life way better.

Sarah 1:03:01
And I strongly encourage thinking outside of the box for how to get your life back. A stroke survivor the other day reached out to me about amputating his arm because he saw how I was on amputating my foot and I was like, dude, I would have cut that thing off. I would have asked for Bogo if I could cut that thing off easily. But it’s really hard to replace an arm unfortunately.

Bill 1:03:27
So you couldn’t possibly have known how good a decision there was going to be to amputate a leg, I didn’t think you knew how much it was gonna change your life for the better. You just wanted to get rid of the pain and if that was gone, and that would have been fine.

Sarah 1:03:43
Yeah, it was a huge risk. I mean, it was a huge risk. I owned a house in Nashville with the significant other at the time. And after we ended our everything, I sold the house, and I paid off all my debt, all my student loans, all my medical bills, everything just in case, I have made a really bad mistake and could not go back from it.

Sarah 1:04:03
So like I set myself up to possibly have to move back in with my dad and have him be my caretaker. I mean, I obviously didn’t tell him all this because I wasn’t gonna like scare him. But like I said, I set myself up to where like I was ready for the risk. And I was ready for it to go wrong if it did, but every finger and toe and everything was crossed, it would go right and it went right. So we’re very lucky with that.

Bill 1:04:31
You sure that you got lucky after being unlucky a few times. So you know what, I think you deserve that and you earned a little bit of luck and a little bit of things going your way. I mean, it’s a great message to people listening that are going through really hard time because stroke makes things a bit worse.

There are better things to come

Bill 1:04:51
Even if you know, the stuff you’re going through is still there and then you got to deal with stroke and everything gets compounded. So it’s a great message for people listening to that. You know, there’s a bit of things to come there is a light at the end of the tunnel, you can focus on what you want to do and what you want to achieve and you can get there.

Bill 1:05:08
And yeah, I’m just stunned that what you’ve been able to go through and achieve, and I just hope that you continue to do well and play, you know, go outside and play and have fun with the dogs and enjoy a full a full life, you know, whatever that means for you. I really hope that that’s how it goes for you.

Sarah 1:05:33
Well, thank you. I appreciate it. So far, it’s been pretty good. If work would stop having to pay me to be better, go outside and play more, but I’m just happy that I can still work and do everything that I wanted to do.

Bill 1:05:49
Yeah. Sarah, thank you so much for being on the podcast. If anyone wanted to reach out to you, I’ve got a feeling that a few people might reach out to you. On Instagram, what’s your handle? Where are they going to find you?

Sarah 1:06:01
It’s Sara__Nickel. There’s two underscores between Sara and Nickel and I don’t have anything else besides Instagram.

Bill 1:06:09
Cool. I’ll make sure that your Instagram link is there so people can find it as well.

Sarah 1:06:14
Just keep doing what you do you’re already doing so much.

Intro 1:06:21
Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:06:48
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 1:07:10
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Intro 1:07:25
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The post 136. A Successful Solution To Leg Spasticity appeared first on Recovery After Stroke.

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Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem. Sarah Curlee had constant leg spasticity in her leg as a result of an ischemic stroke at age 27 and by age 29 she made the dramatic decision to have her leg amputated to solve the problem. Recovery After Stroke 1:08:17
135. Stronger After Stroke – Peter G. Levine https://recoveryafterstroke.com/stronger-after-stroke-peter-g-levine/ Mon, 01 Mar 2021 14:59:18 +0000 https://recoveryafterstroke.com/?p=5904 https://recoveryafterstroke.com/stronger-after-stroke-peter-g-levine/#respond https://recoveryafterstroke.com/stronger-after-stroke-peter-g-levine/feed/ 0 <p>As stroke survivors in rehab reach their plateau they are often discharged. Peter G Levine a clinical researcher says that this is when the real work starts</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stronger-after-stroke-peter-g-levine/">135. Stronger After Stroke – Peter G. Levine</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> As stroke survivors in rehab reach their plateau they are often discharged. Peter G. Levine a clinical researcher says that this is when the real work starts

Socials:
https://www.amazon.com/Peter-G.-Levine/
https://recoverfromstroke.blogspot.com/

Highlights:

01:14 Introduction
03:09 Stronger After Stroke
11:11 Mental Practices
19:24 Functional Magnetic Resonance Imaging
21:57 Constraint-Induced Therapy
29:27 Repetitive practice
39:45 Safe in negativity
50:48 Clinical Education Talks
1:00:07 Keeping track of progress

Transcription:

Peter 0:00
Discharge from therapy is not the beginning of the end, it’s the end of the beginning. After a stroke, you have this area that’s dead. And then there’s this area that surrounds it, it’s called the Penumbra and it heals.

Peter 0:14
And as it heals, there’s originally some swelling around it. And that makes the neurons not work very well. They’re still alive, but they’re not working. They’re said to be stunned. It’s called cortical shock, there’s a technical term for it.

Peter 0:30
But as that all the swelling goes down over the first three months, usually, those neurons start to come back. And as they come back, the person makes quite the incline in ability gets very intense, they get really good, but at some point, all that Penumbra is back online, and they naturally and it’s an occurrence, it happens to everybody they plateau.

Intro 1:01
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction – Peter G. Levine

Peter G. Levine
Bill 1:14
Bill from recoveryafterstroke.com This is Episode 135. And my guest today is Peter G. Levine. Peter is the author of the book Stronger After Stroke, which is in its third edition. And he’s also a researcher, clinician, professor and science communicator.

Bill 1:32
He has spent his career reporting on the best systems for driving post-stroke brain plasticity. Today, we’ll discuss what you must do when you’ve reached the plateau in your recovery, and you have been discharged from rehabilitation.

Bill 1:49
If you enjoyed this podcast, and one of the episodes has impacted you in a positive way, please leave us a five-star review on iTunes or your favorite podcast app. If you’re watching on YouTube, click the thumbs up and subscribe to get notifications of new episodes.

Bill 2:06
Also, please share your favorite podcast episode on your social media. This will help other people that might be going through a tough time right now feel a little bit better about what the future may hold. And it may offer them hope that there are better days ahead. Thanks for tuning in and listening. And now it’s on with the show. Peter Levine, welcome to the podcast.

Bill 2:31
Thanks, Bill. I appreciate it. Thanks for having me.

Bill 2:34
My pleasure. Thanks for reaching out your handle and your blog and everything you do is called Stronger After Stroke. And I love the sound of that. It potentially can be controversial for somebody who’s had a stroke to read that and I’ll tell you why.

Bill 2:51
Because some people don’t feel stronger after stroke, and they’re going, What do you know about it, Peter? So with that, in mind me playing devil’s advocate, tell me about how you came-up with the name stronger after stroke?

Stronger After Stroke


Peter 3:10
First of all, I love the devil’s advocacy going on. And it’s a good thing. It’s been pointed out before that it’s probably not the best name. Some people think, because you’re at your worst right after your stroke.

Peter 3:26
But I think that was my point was that if the bottom of it is the stroke itself, then you’re hoping to increase after that. So you would be technically stronger after a stroke unless the stroke kills you, which, unfortunately, it does a lot of people or it leaves them in a vegetative state, or they’re completely dependent in a nursing home.

Peter 3:52
But for most people, the bottom of it is something that they can jump off of and become stronger after that. How I came up with the name I have no idea. I don’t even remember that far back. The first edition was 2008 probably started writing it in 2005. I don’t know.

Peter 4:14
Here’s what I will say it’s been plagiarized so much I should have probably bought the copyright or whatever you call it on that. Because there’s all kinds of groups major universities here have groups that are major neurological journals have named articles stronger after stroke.

Peter 4:35
So it’s been plagiarized a lot but I think it does have a catchiness I’m hoping that people can get stronger after stroke. I will say that you’re right. The blog is called Stronger After Stroke. The book is called Stronger After Stroke. And my email is strongerafterstroke@yahoo.com. So it’s like a one size fits all catchphrase.

Bill 5:02
It’s a good one. I like what it potentially could inspire in somebody. And I don’t necessarily feel stronger every day after the stroke that I had, but I do feel like I am better for it. And that stroke is one of the best things that ever happened to me, and that’s something that I am working on.

Bill 5:24
And I’m finding, there’s a lot of stroke survivors that can say that, and there is a lot of similarities in the, how they get there, I’m doing my own little research project on how was that people managed to get there, and I feel like, soon we’ll be able to take people through a process to teach them how, what the steps are, to be able to say, stroke’s the best thing that ever happened to me, regardless of the deficits that they live with, or experience.

Bill 5:49
So your heading does inspire me to be stronger after stroke, as well, as potentially seeing myself in those early days as somebody who would say, you know, what, do you know, Peter? As if you can be stronger after stroke. So I love how it plays, at least in my mind, it plays games of context, and where I place it and how I talk about it.

Bill 6:16
Now, you’re a clinical researcher. So I’m going to make the assumption that in 2008, or whatever it was that you came-up with the name or wrote the book, I’m going to make the assumption that you saw that some people are experiencing a stroke and then coming back stronger. So tell me a little bit about your background and the kind of work that you do and how you ended up in stroke work?

Bill 6:42
Yes, so I started out. I got a bachelor’s degree when I was supposed to after high school. And it was in communication, something completely unrelated. My real area of interest when I was getting that degree was I was a drummer in rock bands. And so I was very interested in bands, the bands I was in.

Peter 7:07
But when I graduated, I moved to a town here in the United States called Austin, Texas, which is very well known for its music. And I was living in Washington, DC at the time, and the music career just wasn’t going anywhere. So I graduated from college, I made that commitment.

Peter 7:25
I moved to Austin, Texas, got into a band very quickly after that, then very quickly got signed to a major label. So MTV, I don’t know if you guys have that. But MTV touring major label albums, the whole thing. And in a lot of ways, that ability to understand what it takes to be a good, maybe better than good musician is the same thing that stroke survivors have to do, in order to get stronger after stroke to get better after their stroke.

Peter 8:02
It’s the same, absolutely the same process. And I’ve gone back and watched a few of your videos about your sort of obsession with neuroplasticity. That’s what it’s all about. That’s what athletes know well, that’s what musicians know well.

Peter 8:17
In any case, you know, I was on the road for quite some time with this band, and then we parted ways because it wasn’t a great lifestyle for me, really had nothing to do with sex and drugs and rock and roll as much as it had to do with dietary things and not getting enough sleep and all that stuff.

Peter 8:37
So I went back to school, got a degree in physical therapy, and worked clinically for a few years, worked with stroke survivors, and then got an offer for a job in clinical research at the Kessler Institute, which is a big hospital here and in the states that has a very big research arm.

Peter 8:55
And I had three bosses at the time, something I would definitely suggest to anybody to not have more than one boss. Maybe one boss and one wife, and that’ll do it, anything more than that is too much. I had three bosses at the time. One was the chief vascular surgeon in New Jersey, one was a PT, PhD Sue Ann Sisto, who’s still in clinical research.

Peter 9:21
And then my boss and then a colleague and now a friend of mine, a friend the whole time. Stephen Page, who is an occupational therapist now, but was somebody that was working on his PhD anyway, it’s a long story, but what I’m trying to spit out here was my friend Steve, who was getting a lot of the money for our research into stroke was a very high-level swimmer in college.

Peter 9:50
So when we got we started in 1999, and we started in this small portion of this very large lab, and we had an athlete and a musician looking at stroke recovery. And Kessler was funding some studies, the NIH was funding some studies, we got some other funding.

Peter 10:10
And the question became, what the heck do we look at? So for a long time, therapists have thought that if they put their hands on you in a certain way, and they handled you in a certain way, they’re called handling techniques, that was the zenith that was the best that you could do for stroke survivors.

Peter 10:32
You would handle them, and then somehow, that would transfer into great movement. To an athlete, that makes absolutely no sense. Because you never have a coach handling you, you know, that coach would get punched in the face after a while. That’s what I’m saying, coach don’t touch me.

Peter 10:51
Musicians are the same way, you don’t have a piano teacher with their hands over the hand of the student. So we didn’t think there was a lot there. But what we did find some traction on was what athletes did, to get better at their sport.

Mental Practices

Peter 11:11
And my colleague, Steve had been a very high-level swimmer. And the first thing he wanted to look at was mental practice. Mental practices like mental imagery. So if you’re going to be a swimmer, or you’re going to be a gymnast, or you’re going to be a musician, you would mentally practice the song, or the swimming, the stroke, the routine, whatever it is. And that would do something in your brain and make you better at whatever that skill was.

Peter 11:41
And he came to me in 1999, and said, Look, I want to do mental practice and stroke survivors. And I said, you shouldn’t do it, Steve, because you’re going to end up wrecking your career. Because if you do it, you’re going to take this very soft thing, mental practice, whatever the heck that is and you’re going to put it up against dense hemiparesis.

Peter 12:03
And it’s going to get its butt kicked, and your career is going to end before it ever starts. So about a couple months later, he came up to me and he said, look, I really want to do mental practice in stroke survivors. And I said, Steve, we talked about this, you’re going to wreck your career don’t do it.

Peter 12:19
And he said, well, we got funding. And I said, let’s do it, it came down to funding. So we looked at mental practice. And here’s something that I’m sure people that have stroke would be very interested in. If you mentally practice something, some movement that you know, well, the portion of the brain that lights up is exactly the same portion as if you actually do it.

Peter 12:43
Not only that, but the muscles involved in that movement will fire their fire, very minutely, but in the same order and for the same duration as if you actually do it. So let’s review, you don’t even have to do the movement, all you got to do is think about the movement, the muscles fire, and that portion of the brain dedicated to that movement lights up.

Peter 13:04
The new research now says that you don’t even have to go that far. If you observe somebody doing a movement, and they’re doing it well. The portion of the brain, if you’re watching them, that portion of the brain that’s dedicated to that movement in you will light up and those muscles will fire in the same duration in the same order as if you were to do it.

Peter 13:30
So let’s review. If you imagine doing a movement, if you see somebody else doing a movement, or if you do the movement, yourself, all three of those drive brain changes, and help recovery. So that was our launching off point athletes and musicians. Thanks for listening Bill that was long.

Bill 13:53
It was good. There’s a lot of information in there. Basically, the long and short of it is is that. And this is the challenge I have with the sciences is that they take something that we know to be true in nature, and then they take 20 years to explain it and then prove it before it can be applied.

Bill 14:14
And one of the issues is that think about every child that has ever been born, that has walked. It has done that by seeing every other person around them walking and it’s going, I can do that. Or I want to do that or how do I do that. And it drags itself and it uses its arms and it uses legs and it does all these things and eventually, from its knees or from its belly or from its butt wherever.

Bill 14:41
It gets to its knees and then from its knees. It has this next transition which is to walking and somehow it knows to get to the knees before it gets to walking but somehow it knows when it gets on its feet, what has to happen? If you fall over what you have to do is you have to get up again and you have to just find a new way to do it, strengthen the muscles do all those things.

Bill 15:03
So I dislike that about science. But also I like that about science because for the majority of us we’re a massive head on shoulders, and we need to be convinced at the head level that something is possible before we can take it and embody it and actually take steps and do it.

Bill 15:22
What I love about what you said is that it’s the lazy man’s way to get better at stuff, it’s you don’t even have to do anything you don’t even have to put any effort in. All you got to do is imagine yourself. And if you can’t imagine yourself, get somebody else to help you imagine yourself by talking you through, you know, the process of for example, I do this with people that I coached, close your eyes, imagine yourself doing this thing, pay attention to your leg, pay attention to your arm, pay attention to your gait, your body, your position, where you are, how it’s feeling.

Bill 15:56
Breathe, and then from there, take them out of that. And I know that what I’ve done is lit up or created new neural pathways that they can then access when I’m not around to achieve the same task. And I put a lot of time and effort into that myself when I actually couldn’t walk after my stroke.

Bill 16:17
And what happened to me was, I had a AVM that started to bleed in February of 2012. Then bled again in March of 2012. And then it bled again in November of 2014. And then my surgeon said, we have to have surgery, you’re at risk of this thing bleeding out and causing a lot of damage or death, it’s safer to have, the risks are lower if you have the surgery and then we’ll deal with whatever it is that you have to overcome after surgery.

Bill 16:50
So when I woke up from surgery, I couldn’t feel my entire left side, my proprioception was out and I had altered sensation on my left side, which I still live with, I still have. And I was waiting for at least a week before I could actually get into the physical rehabilitation room where two therapists would hold me up or they would attach me with the crane to the ceiling to make sure I didn’t fall over.

Bill 17:17
And in the rest of the time, while I was waiting, I was using guided meditation to imagine myself walking, I was in the bed, in my ward, lying down with my eyes closed, going through this process of imagining myself grabbing the the rail with my left arm, and my foot going in the position that I needed it to go.

Bill 17:41
And it taking over and walking and supporting me and holding me up, I imagined how my knee would not buckle under my weight, and it would support me, imagine how my muscles would interact with my knee and my ankle and my foot. And I just started playing this over and over and over in my head.

Bill 18:01
So that when I got to the first opportunity to actually be supported and guided through this with a physical therapist, I had a baseline I had somewhere to start from and it wasn’t all brand new. And I had a week’s worth of I’ll call it self therapy before I get into actual therapy. So I really love that somehow your athletics and music background.

Bill 18:34
The people that were involved in your, in your team, who had those types of backgrounds, transferred their skills and their knowledge from their other career that seems totally irrelevant when it comes to stroke and applied it in stroke. And that’s one of those beautiful things that people who have come from different backgrounds and have had a stroke, already have the skills, they don’t realize that they can transform and adjust and apply to stroke recovery.

Bill 19:06
And it’s just about getting a little bit creative and perhaps having some guidance into how to do that. So what did you guys learn after the study began and after it was funded and allowed you guys to gather some data?

Functional Magnetic Resonance Imaging

Bill 19:24
Right, so our data really had to do with functional magnetic resonance imaging. It’s a way of scanning the brain and seeing if a portion of the brain lit up that didn’t light up right after the stroke. One of the interesting things that we found was, as you know, your left side is is the weaker side. So the AVM the malformation, the surgery was on the right side of your head. You have a scar there now is that true?

Bill 20:00
Do it’s not visible today because my hair is longer than I

Bill 20:03
see it, I think I see it, it runs from about the crest of your ear to the crest of your head.

Bill 20:08
That’s it. Yeah.

Bill 20:12
So, that was on the right side of your brain, and it affected the left side of your body. Now typically, if you have neuroplastic change, it will happen, what they call it in a Peri infarct area right around the area of infarct. So you have the area that’s dead, and around that area is the part that comes back and where the neuroplasticity happens.

Peter 20:41
And we certainly saw that with mental imagery, mental practice. But the weird thing that we saw was that the ipsilateral side, so usually it’s the contralateral side that controls so the left side of my brain controls the right side of my body, and vice versa. But what we saw was, if it was a left hemiparetic person, often, the left side of the brain would control the left side of the body completely backwards.

Peter 21:09
And yeah, and if you think about it, it kind of makes sense. Look, the brain, we always talk about the mind and the brain, the mind is you, your ambitions, who you love, what you’re trying to accomplish, the brain is just the machine that carries it out. We don’t have to care about what the machine, how the machine does it and where the machine does it let it worry about that it’s good at that.

Peter 21:32
All we got to do is present a situation where we’re so over-stressing the affected side that something takes over if it happens to be the ipsilateral side, my right hand is has a problem. It’s the right side of the brain. Why not? It’s all good neurology there. We know that neuroplasticity is not about the number of neurons, it’s about the number of synaptic connections between neurons.

Constraint-Induced Therapy


Peter 21:57
So let the brain do it on the wrong side of the brain, what do we care? Typically, what happens is it may initiate in the ipsilateral side, but then it migrates to where it’s supposed to be. But that happens further down the line. The other treatment option I should talk about that our lab was sort of well known for was I’m sure you’ve heard of constraint-induced therapy.

Peter 22:25
Have you heard of that Bill? Yeah, so it’s exactly what it sounds like, if you had left hemiparesis. So your left side, it was weak. The clinician or really the stroke survivor themselves would wear a mitt on the good side, and then have to live their entire life with their bad side, whatever that they were trying to do, they would have to do with their bad side.

Peter 22:54
Now, obviously, you have to have some movement to jump off because otherwise you’re tying up the good arm and they can’t do anything with a bad arm and that’s just mean. But if you get the right kind of person, you drive huge amounts of brain changes. Because they’re forced to do it.

Peter 23:11
It’s literally called forced use. We call it constraint induced therapy because we constrain the good side force use of the affected side. And that is well is very much like an athlete would handle things. So I played basketball for a long time, I was never really great, but I love playing it, how I broke my nose and broke fingers and all kinds of.

Bill 23:33
Sounds like you were terrible.

Peter 23:35
It was terrible, it was a disaster. But no, I was good in some ways. One thing I was really bad at. I don’t know how it is in Australia. But here in the United States, if you can’t do something with a pickup game of basketball, there’s people on the sidelines that will say he can’t do this, he can’t do that he has no hops, they’ll yell at you, and it’s just like, it’s a great fun.

Peter 24:00
Anyway. So one thing that was very clear about my game is I couldn’t go left, I could use my right hand and back in the 70s, you could get away with just dribbling right handed. But then every you know, all these great basketball players now everything is bilateral. So I spent about a month doing nothing but constraint induced therapy on myself and only dribbling with my left hand.

Peter 24:24
And I gotta say I got better with my left hand. It still wasn’t as good as the right hand, but we’re not trying to make stroke survivors perfect. We’re just trying to get them better. I think this very high bar that a lot of clinicians set up or that stroke survivors set up on themselves.

Peter 24:41
Every day is a challenge for everybody. We’re all getting older, you’re just trying to chip away at your present abilities, just like a high level athlete would just like a high level musician would. So those two things started our path, mental practice and then this other forced use constraint induced therapy, both steeped in athletic training in a lot of ways.

Bill 25:05
Absolutely, and again, it makes sense as athletic training is being used to support recovery of a body part, a leg, an arm, whatever it’s part of the body like that’s what athletics does is it trains and works the whole body. And if you’re applying that type of training to stroke recovery, I think it’s a very simple inroad into giving people an insight into remember when you used to play football, or when you used to play basketball, how you trained, and you did a certain thing and you went through a certain process?

Bill 25:40
Well, stroke recovery is just the same. There’s a couple of differences in the way that your arm works now. But the idea of coaching and therapy, it’s basically the same idea, they name it something different. And that’s one of the interesting things about the mindset and getting people switched on to taking recovery down a different path.

Bill 26:04
Is that they think that recovery begins and stops, there’s a start, and then there’s a stop. When you get to the stop, you’re done, you’re recovered, and things are better. I’ve got a coaching client, a stroke survivor, who’s a person that I coached through his, you know, troubles and tribulations that stroke has caused, and we’re moving towards a better outcome for him and helping him get better.

Bill 26:33
And he has a deadline of seven months out why aren’t I better yet? And just yesterday, I asked him, How did you get seven months as being the dates or the timeline by when recovery would be done and complete? Where did you even come up with that? And he doesn’t have an idea as to where he came up with that. But many stroke survivors do that they don’t understand that coaching in basketball, you could be Michael Jordan, and the best in the world.

Bill 27:04
And when you’re playing for the Chicago Bulls, and you’re going for that next championship, and the next one, and the next one, the next one, coaching hasn’t stopped, because you won the first one, coaching continues. And it continues to get refined and pick up things that you forgot about, for example, from when you were first starting basketball when you were just a child.

Bill 27:29
And we keep reintroducing ideas and refining and refining, so that when you’re 20 or 30 years into your basketball career, you’re still getting supported and coached and talk through things. And people are paying attention to what you’re doing. In case you’ve missed that you’ve slackened off on your approach to the ring, or the way that you’re defending, you know, your zone.

Bill 27:57
And, and that’s the thing, like it’s really bizarre that stroke survivors have a deadline, a timeline, and anything that’s got to be done by that date. And then I can just go back to life as normal and not have to worry about anything. Roger Federer is in his 40s. He’s one of the best tennis players in the world, and he still as a coach sitting in the stand with him every single game.

Bill 28:17
And the coach doesn’t not go to one of those games, because Roger will be right from now on, you know, it’s really fascinating, the whole mindset around how when I go to recovery, I’m going to get discharged from the hospital, and I expect to be okay, and if I’m not, they’ve let me down.

Bill 28:38
But no, that’s when strike recovery becomes your responsibility. And you need to be the person who says, Thanks for getting me to this point. Now, what do I have to do? Who do I have to recruit? How am I going to go about getting to the next milestone and then the one after that?

Bill 28:57
And it’s just a really lovely way for you guys, your team and clinical researchers to get to this point of helping people get stronger after stroke by focusing on things that we all do as humans is we just have these things that we’ve always done, and now we’re just applying it in a new way to recovery from an ailment.

Repetitive practice – Peter G. Levine

Peter G. Levine
Bill 29:27
Yeah, I think what you’re headed towards, and it’s where you should head is simplicity. Why do we have to make it so complicated? If we know that repetitive practice makes you better at something, of course, it’s going to happen in basketball, and of course, it’s going to happen with stroke recovery.

Peter 29:54
And I think that that’s like been a great asset that I’ve had that I’ve worked with really smart people. And really smart people have helped me come to the conclusion that it’s the simple stuff, the stuff that we’ve been doing for 250,000 years as human beings to be really highly skilled at different things.

Peter 30:14
So the other thing is, the other point that you made is that discharge from therapy is not the beginning of the end, it’s the end of the beginning. What they do is kind of a little sneaky, though clinicians. So here’s what happens. After a stroke, you have this area that’s dead. And then there’s this area that surrounds it, it’s called the Penumbra.

Peter 30:38
And it heals, and as it heals, there’s originally some swelling around it. And that makes the neurons not work very well. They’re still alive, but they’re not working. They’re said to be stunned. It’s called cortical shock, there’s a technical term for it. But as that all the swelling goes down over the first three months, usually, those neurons start to come back.

Peter 31:04
And as they come back, the person makes quite, the incline in ability gets very intense, they get really good. But at some point, that all that Penumbra is back online, and they naturally and it’s a it’s an occurrence, it happens to everybody, they plateau.

Intro 31:24
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 31:48
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

Intro 32:07
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

Bill 32:26
That plateau. I don’t know how it is in Australia, but in the United States. What they do is they discharge you when you plateau. The thinking is, if you’re not getting any better, why are we spending money on you? Why are we spending time on you?

Peter 32:41
The thing is, though, that they discharge them. And then the person usually goes home and gets worse. Why? Because they’re sitting around not doing their exercises the way they should. They’re kind of stunned by the whole process. Oh, no, I’ve been discharged. I guess that’s all I’ll get. She told me that I’m done recovering, I’ve plateaued.

Peter 33:03
And she’s the expert. So now what am I supposed to do? So they go home, they relax, and they actually get worse, there’s a declination. So at that point, yes, it’s not the beginning of the end, it’s the end of the beginning, the gains get very much harder to get. There’s no doubt about it. You don’t have this easy ride of the brain coming back online. Now you got to start to work the same way. As you pointed out, Michael Jordan worked. Did you see the series about the Bulls that was on Netflix?

Bill 33:40
I haven’t seen it yet. But yeah, I do know the one.

Bill 33:42
Yeah. So I mean, like, he went through this process of okay, now he couldn’t jump through the roof anymore. So he had to lean on this jump shot. And then he realized that he had to be more of a team player, there was all these things he had to go through to grow.

Peter 33:58
Yes, he was a brilliant basketball player that’s discharged. Okay he was already brilliant when he got out of college. Now, was he going to do the hard work that takes him just a little bit more, and then stroke that just a little bit more of the difference between, you know, holding on to relationships, getting back to work, getting back to school, getting back to a sport, it’s those little things at the end that they do themselves that are super important.

Peter 34:27
I happen to be lucky in that a lot of our research had to do with people that were chronic, that was after their plateau. See, if you do a study, during the part in which the brain is coming back online. How do you know if it’s something you did? Or if it’s just the brain coming back online?

Peter 34:45
The way we typically do that is we have a control group. And then we have an experimental group, and we see who gets better. Now if it was something we did, then the experimental group will get a little bit better than the control group. But a lot of our studies were in chronic people. So they It already plateaued, they were not supposed to get better.

Peter 35:03
Clinicians were convinced they wouldn’t get better. And I’m not just talking about therapists, I’m talking about physiatrists, I’m talking about neurologists, they all kind of believe for a very long time, you couldn’t get better after that three months or six months, or as your friend says, seven months.

Peter 35:20
Now, we know that that’s not true, the brain is incredibly plastic, we don’t even know what the parameters are. So now you got to chip away. And just like a really high level athlete, or really high level musicians, you’re not having these great, I wasn’t walking, now I am walking, my arm wasn’t working, now what is working, it’s not going to be these big fancy things, it’s going to be these little things.

Peter 35:41
And often stroke survivors are not really good at measurement. Because they’re not good at measurement. They can’t tell they’re getting better. One thing I would suggest that any stroke survivor does is videotape yourself, if it’s going to come down to a nuanced change, then videotape yourself over months and see if you’re honest with yourself, because you may be getting better, but you don’t see it.

Peter 36:05
Maybe other people do, who haven’t seen you for three months. But if you have a videotape, if it’s a speech deficit, record your voice, whatever it takes to show that yes, you are getting better, or you’re not. Because if you’re not getting better, you got to change something up, you got to get got to do something else.

Bill 36:23
Yeah, I completely agree with that a lot of the people that I speak to will tell me, they’re not doing better, or things are worse or not as good or whatever. And one might be having a conversation with them. And three months earlier, I wasn’t able to have a full on conversation with them or I wasn’t able to talk with him for beyond 20 minutes and now I’m talking to them for 30 or 40 minutes.

Bill 36:48
And there’s all these little bits and pieces that they missed, because they’re focusing on what they can’t do, rather than what they can do. And if they simply shift their focus on what I can do, and do more of that, they will be able to get a better outcome. And they’ll be able to feel better about themselves, because they’re constantly reinforcing oh, my gosh, I did that, and wow, I did that, and now I’ve done that, and now I’ve done this.

Bill 37:17
And if you go back and reflect on all the things that you’ve done, those things that will far outweigh all the things that you haven’t done, because if you can’t walk, because you have a particular problem with one of your legs, and three months down the track, you still can walk, nothing’s really changed. It’s just I’m not walking, and I haven’t walked.

Bill 37:36
But if your leg, also, at the beginning of that three months, didn’t have feeling and now it does. And if you like also at that three months, at the beginning of that three months, couldn’t move your toes. And now you can it kind of is irrelevant, that you can’t walk it, what’s relevant is that you have feeling back on your toes are working.

Bill 37:58
And now you’re closer to being able to use that leg when you were three months ago. And we need to focus on those things, we need to focus on the things that are going to give us the boost.

Bill 38:10
And if you have somebody that’s trusted, that loves you, that’s caring for you, that’s helping you a friend, that’s telling you those things pay attention, they’re not just saying it because they want to make you feel better, they’re saying it to you because maybe you’re not paying attention, and they want you to have an awareness of it.

Bill 38:30
And they want you to focus on what you have been able to achieve rather than what you can’t. And I think that we’re also as humans, even before stroke, our own biggest critic and our own worst enemy. And stroke just makes things a little bit more detailed or complicated or difficult when it comes to exacerbating or highlighting our weaknesses or our problems or our challenges.

Bill 39:00
And if we let it, it could really take that conversation of I’m not good enough or I’m not able and it could really spiral out of control. It’s really important that what we’re doing is using our way of being and thinking in the opposite way and using it against the negative side, then trying to turn it and convert it into the positive side. It’s the same amount of energy that we use to have negative thoughts.

Bill 39:29
We could just switch it and have positive thoughts. It’s the same amount of time and effort and in fact, it’s less emotionally draining so therefore it’s going to take less energy to have a conversation that’s positive and going to make you feel better.

Safe in negativity

Bill 39:45
So why do you think we feel safe in the negative because I find this in my own life. It’s just easy to go I can’t accomplish that, It’s too hard, I can’t see the force through the woods kind of deal. What do you think? I wonder if it’s, it’s a safety thing, it’s a safety valve, I’ll just go to where I’m safe, but negative, rather than this uncharted territory that has potential.

Bill 40:12
I think because, and I’ll speak personally, I can’t speak for everybody. But for me, I think it was growing up when I was probably starting to first interact with children in a big way, which was at a school, you know, perhaps I listened to children highlighting my differences or highlighting the things that they weren’t aware of.

Bill 40:35
And I picked up a little bit of information from them once and then it happened three weeks later, and I took that on board. And that became the theme of what I continue to hear. And then sometimes, my older brother who wanted to exert his authority, as three years older than me, you know he said, you can’t do that, or you’re not going to do that, I’m not going to let you do that, or whatever, you know, just being a child.

Bill 40:59
And that grew and grew, and became this thing that I didn’t realize was happening to me, because it was happening every day. It’s like, it just creeps up on you, it just happens slowly, but surely. And we don’t have enough self awareness or somebody hasn’t jolted us into showing you how those incremental steps have shaped your life.

Bill 41:24
And now you’re an adult, and you haven’t reflected on that ever. And you’ve never had somebody coach you or guide you or support you. And reverse some of that, I’ll call it a spell, reverse some of that spell that was placed on you over those years. And that’s what I feel like coaching does, people eventually get to the point where they get fed up with feeling like they can’t, or they won’t or they shouldn’t or they’re not up for it.

Bill 41:54
And then a coach will say, yeah, you can, yes, we could. And yes, we will overcome it and watch on the other side of that fear is relief and growth, and a new experience and new emotions and all these amazing new things. And I know it’s unfamiliar, so because you’re not certain or sure about what’s on that other side, you’d rather stay with the devil, you know, than the devil you don’t.

Bill 42:20
And why don’t we put that devil that we do know, why don’t we put them on the back foot for once and send them elsewhere and go to somewhere else where there might be an angel on that other side, not a devil. And then life changes and switches. And I’ve noticed that for myself that I was also going to the wrong people Peter, for advice.

Bill 42:45
And as a 25, 26 year old, I would go to people that were not business inclined, and ask them for business advice. Now, it was because they were older than me or the people that I lived with, or that were around more often than others. So of course, when I didn’t know who to seek out, I would seek out people that were unqualified to answer.

Bill 43:06
And I would get their advice. And then I wouldn’t get the advice I wanted, I’d be frustrated and upset with them, I would blame them for telling me that I wasn’t capable of doing something because they were projecting their experience onto me. And I had no conscious awareness of how that interaction was my fault, I was the one that was creating that by just going to the wrong place.

Bill 43:31
And when I finally got sick and tired of getting the wrong feedback, I started to seek out people who had done what I wanted to do. And asked them to tell me what I needed to do to get there. And that changed my world. And that’s why as my podcast suggests, recovery after stroke, I’ve taken this position nine years after my experience first started to say I am where you want to be.

Bill 44:05
And if you ask me, I will tell you how to get there. And if you’re afraid I will hold your hand. And if nobody has ever told you that it’s okay to be afraid, but do what you have to do anyway, I’ll be the guy. And if you want to ask a million questions, just ask. So I’m now offering this part of me in a way that I was hoping that I would find in another stroke survivor.

Bill 44:35
And I must say there wasn’t anyone specifically that I could reach out to when I was in my acute phase to give me hope and to give me support and guidance and I sought out other people in other parts of the world like you who are researchers like Dr. Michael Merzenich. You know, who’s considered the godfather of neuroplasticity, you know?

Bill 44:55
Yes, he is. Have you interviewed him?

Bill 44:59
I interviewed him years ago and I re-released the interview for Episode 108. And we spoke about rewiring the brain and we spoke about all those things because I didn’t know who else to turn to. And I figured who best than the Peter Levines of the world and the Michael Merzenichs, of the world to hold my hand and tell me that we’ll be okay I’m going forward.

Bill 45:22
Don’t put me in the same league as him. You know what he created? He created the cochlear implant. So, it was through that research that he was one of the first to measure neuroplastic change the guy’s a Nobel Prize winner just waiting to happen.

Bill 45:38
We spoke about the cochlear implant on that episode. And in fact, this year in Australia was the anniversary of the invention of the cochlear implant because the team that actually took it to market was an Australian team of scientists who was also working in conjunction with, and collaborating with Dr. Michael Merzenich and his team in the States.

Bill 46:02
I’m pretty sure there was another team in the UK, who all collaborated to come up with the data the proof that neuroplasticity actually occurs. And Dr. Michael says in the interview, he says that they created a device. And they had no idea that it was the brain that made the device able to work.

Bill 46:26
Because if the brain wasn’t plastic and wasn’t able to adjust and learn to take information in from this electronic device to create a new path towards hearing, then the device would be completely useless. So it’s a fascinating conversation. fascinating topic.

Bill 46:45
Anyone who hasn’t had the opportunity to go back and listen to the episode with Dr. Michael Merzenich needs to do that, it’s episode 108. He’s an amazingly generous man. And his work is changing the lives of people that have neurological deficits in all aspects of life.

Bill 47:08
That’s right, posit science. I mean, it’s dyslexia. He thinks that dyslexia is actually an auditory issue. And then if you throw quick, you know, the whole system, but posit science, definitely, I think, first of all, I should point out to you, Bill, that, I think would be a good idea and I don’t know if you have this, but we should stick an ad on my blog for your coaching.

Peter 47:35
Because I think, you know, people may not know that that exists. They may know life coaches exist. But stroke recovery life coaches, that’s a whole different thing. So let’s talk about that. Then the other thing is, isn’t it interesting how the resilience that you develop, because something that happened at school, and your brother and all the things that led up to the stroke are the same things that you brought to bear?

Peter 48:01
Isn’t it interesting that, you know, when we talk about what works seems to work in clinical research is the simple stuff that we’ve been doing for hundreds of thousands of years as human beings anyway, we end up in the same place, it’s all the same thing that works for any kind of challenge in your life certainly works word, this monumental challenge of recovering from stroke.

Bill 48:25
It does. And you know, what’s interesting is that, you know, stroke creates anxiety, and it creates depression. But if you get a stroke survivor, and you ask them about their anxiety and the depression after the stroke, they’re likely to be people who experience stroke and who experience anxiety and depression before stroke.

Bill 48:42
So there’s never been a bigger reason to get to the bottom of what is causing your anxiety of depression. Now that stroke has occurred and forget about stroke recovery, if you’re experiencing anxiety, and depression, and you can get to the bottom of that your stroke recovery is going to take a turn for the better on its own.

Bill 49:03
And we’ve got to overcome all these little things that we’ve never overcome in life, and we’ve never dealt with in life. Because if we get those out of the way, then we can really put all our resources and energy into stroke recovery.

Bill 49:20
And we can harness the information that you and your team and the thousands of other researchers in the world provide, which is proof that we can positively impact our own recovery. And I think clinical researchers, people that haven’t had a stroke that are working in that field, are the most amazing people on the planet.

Bill 49:46
And I love them more than anybody. Because if you were a stroke survivor and you thought you’re alone, you are completely wrong, because there’s thousands of people like Peter working for a lifetime. To help people they’ve never met before and don’t know, what do you say to that Peter?

Bill 50:07
You know, I do a lot of clinical education talks. So I go around the country when I’m lucky, I go overseas. And I’ve done hundreds of these talks. These are boring six-hour talks to occupational therapists. And do you guys call them physical therapists or physiotherapists?

Bill 50:25
Physiotherapists? And also Yeah, we have occupational therapists as well.

Bill 50:29
Right, so a physiotherapist. So that’s who I do most of my talks to. My wife is actually what we call a physical therapist, a physiotherapist. And it was interesting. She came to one of my talks, and it was probably the scariest experience I ever had. She was also a clinical instructor of mine in school.

Clinical Education Talks

Peter G. Levine
Peter 50:49
So it was interesting. But here’s what happens. You know, during a six-hour talk, you have a couple breaks, and somebody will come up to me a therapist. And they’ll say, Can I ask you a question? I go, sure, and they say, I got this guy, they always had it start out with that. I’m working with this guy. I call them I got this guy questions.

Peter 51:15
Okay, tell me about the guy. Well, he has so much spasticity. I don’t know how to get the hand open. And then when he goes to walk, he lurches, and he has terrible balance, and he’s falling over. And he’s very impulsive, and I don’t know what to do. And I look at this person, this therapist, and there’s tears in their eyes.

Peter 51:37
I’m like, is this your dad? Are we talking about your dad here? Is this well, family members? Is somebody is this a good friend, because this is insane that you are this emotionally invested in this, my daughter is going into this pre-speech therapy, she’s 20 years old.

Peter 51:55
You know, my son’s going into athletic training, which is related. My wife’s a PT. I’m on the PT side of things. It’s, it’s an occupational hazard. Look, here’s what I’ll say, you will not do well, in the business of rehab. If you don’t give a crap, you will get eaten up, you’ll get chewed out by the patients themselves, who will sense that you don’t give a crap.

Peter 52:22
And they won’t give a crap about you and I’ve seen people try to do it. But they all end up very unhappy. They just got in the wrong business. But most of them, I agree with you there. They do pretty monumental things. There have been mistakes that clinicians and rehab have made, I think, discharging people on upon plateau.

Peter 52:45
I think in the United States. The average length of stay in the hospital is 5.5 days after a stroke. In most of Europe, it’s about 20 days in the Netherlands, it’s like a month. That’s a mistake to discharge somebody from the hospital to go back home or to go into a nursing facility or work or a rehab hospital. It’s a it’s cruel behavior, to discharge them to a totally new environment that early after the stroke.

Peter 53:19
Other mistakes that clinicians have made, but I agree with you their heart is in the right place. And I think it’s up to people like me to just harness it in a way that allows them to leverage the great neuroscience that we have. Michael Merzenich’s work. I’m sure I’m pronouncing his name wrong. Alvaro Pascall Leoni, Edward Tabb, all these guys that have done the great neuroscience on this stuff, and help therapists leverage it. If they can just get that in there. I think they’ll do even better than they already have. And they’re already doing a good job. You’re right.

Bill 53:54
They’re doing a great job I feel so supported and so grateful for the fact that in Australia, we have the National Stroke Foundation, who supports research and funds, some programs to support stroke survivors. And associated with them in a big way is the Florey Institute, which is a brain research institute.

Bill 54:21
You know, the Florey Institute has offices, I’m sure it’s all over Australia. I’ve been to their lectures in Melbourne where Michael Merzenich first spoke and I first heard about him and learned about him. And then stroke survivors, perhaps aren’t that curious about what’s out there and what they can learn themselves with regards to the cutting-edge research that’s being done in the new findings that we’re discovering and the breakthroughs that are happening in brain health and recovery.

Bill 54:57
And previously, it was this strange world that non-academic people like me wouldn’t go to I wouldn’t go there. Because I wasn’t an academic. I didn’t know anything about academics, I didn’t know how to behave, or act in those scenes. Not that I needed to actually all I needed to do was turn up. But I had this idea in my head that I shouldn’t be hanging around there.

Bill 55:20
And when I finally went there, I just realized, Oh, really passionate, cool, amazing people helping other people. And now what the beauty of it is, is now I get to take people like yourself, out of the lab, into my podcast into the ears of around 4000 people a month who download my podcast.

Bill 55:38
And there you go, we’ve bridged one of those challenges that we had, which was taking new information and new ideas to people. And I really appreciate the fact that you’re so keen to, not only because isn’t that the most important because not only do you need to learn these things, about how to help, you need to tell people that you’ve learned them and that they exist, and how they can apply them to their daily life.

Bill 56:09
That’s the flip side. And we struggle a lot with that in our lab, we would have long discussions, big, long arc discussions, what we’re doing this great work, but we’re publishing in a peer-reviewed journal article that probably clinicians won’t even read, let alone people who have had a stroke.

Peter 56:28
How do we get to these people have had a stroke? And my answer was, let’s do a lot more talks. Let’s write a book, I wrote a lot of articles, I got a blog, I do what I can. And I’m actually going to follow your lead. And me and an occupational therapist here in the states are going to start a podcast specifically about brain injury and what therapists can do to sort of stay up to date was some of this stuff.

Peter 56:54
But I agree with you, I mean, there’s nothing, a really good researcher should be able to explain their work in a way that makes sense to everyone. Same with therapists, same with life coaches, if you can’t make it simple, it’s it doesn’t help anybody.

Bill 57:11
Let’s talk a little bit about as we come to the end, before we wrap up, let’s talk a little bit about the book Stronger After Stroke. It’s the third edition. And its subtitle is your roadmap to recovery. Tell me a little bit about the book.

Bill 57:27
So I was writing articles in a trade magazine, physical therapy trade magazine, and I had a monthly article, it’s called from the lab. I didn’t name it, somebody else named it don’t blame me, well I worked in a lab, so it made sense to them. So one of the articles I wrote was 10 things that stroke survivors can do to drive their own brain towards recovery.

Peter 57:53
And, then I thought, well, you know, I’m doing these talks to clinicians, I wonder if I can come up with 101 things, you know, how they write, like, 101 things you can do to fix your home or 101 things you can do to make your self happier, whatever it is, so but I got, and I started writing this book, and this was in 2004, or so.

Peter 58:14
And I got to about 40. And it was hard like, I don’t have anything else. There’s like, I’m looking at all the research, not just from our lab, but from other labs, and I just couldn’t find more than 40 things. So that’s about the time I changed the name to stronger after stroke.

Peter 58:32
I originally wrote it for clinicians to sell in my talks, you know, I would go to these hospitals and do talks. And they were like, what do you have a book, you know, you’re supposed to be selling a book, right? Yeah. So I self published it. I went to Kinko’s, which is our local, you know, the place that will, you know, bind a bunch of papers into a book.

Peter 58:32
And, I sold it, and it did well, and then wrote a couple of emails to some publishers and, and one of them was interested, they said, We’d like your book, we’d like the idea. Here’s what we want you to do. rewrite the whole book, because right now, you’ve written it for clinicians.

Peter 58:32
And it’s a little technical for us, we need to sell to stroke survivors. In the United States alone, there’s about 800,000 strokes per year. That’s the market we want to hit. And so I spent about three months, just shortening the sentences, making everything simple. And bringing it down into a simple format, which is, how do you do it? How do you set it up?

Peter 58:32
And then what are the precautions and then just going through mirror therapy, constraint news therapy, imagery, mental practice, all these other paradigms that we had used in that we had done research on and others had done as well. And so it was really just an outcropping of trying to make things simple and try to bring the research to the people. And a lot of clinicians read it as well, because they want simple to everybody wants simplicity.

Keeping track of progress

Bill 1:00:07
Yeah, it’s complicated is too hard for most people, let alone stroke survivors who challenging the body to start to relearn how to do things that used to do without any thought whatsoever. And I found that too much information or too much-complicated information was just, it would just, you know, glaze my eyes over and that was it.

Bill 1:00:31
No more, information about that was going to go in my ear didn’t matter how long was spent looking at the page or listening to somebody talk about it. So it’s definitely going back to the basics, it’s definitely going back to those first things that we did when we were just learning how to get up on our feet, learning how to walk again, learning how to do all those things from babies, it’s just really going back to the bare bones, bare basics, and then just improving on the things that you’re already good at.

Bill 1:01:07
And doing those even better, and I suppose being aware of what you’re not go that. And then just focusing and then just noticing how that changes through that advice that you gave, which was record yourself talking, record yourself walking, and just look back on it regularly to make sure that you’re noticing the improvements.

Bill 1:01:37
Yeah, yeah, I think you made a good point in there. It was like in the third sentence, work on stuff that you’re bad at. Because the stuff that you’re good at, you can do. And you know, any musician, a guitar player will pick up a guitar and they always first thing they play is their favorite riff.

Peter 1:01:56
But it’s the challenge outside of that stuff that you’re already do well, that’s where the real pot of gold is. And that’s where measuring videotaping, audio recording all that stuff can be really helpful to give you a sense that you’re getting better, you may not see it day to day, but month to month, there may be some big changes in there.

Bill 1:02:19
But I really appreciate you reaching out and asking me to be a guest. I really love it. When people do that. It excites me that actually people are interested in being on my podcast. But more importantly, I’m glad that you did that. Because the work that you’re doing is really important.

Bill 1:02:38
And people need to hear about it, and people need to know about it. So if anyone wanted to find out a little bit more about you, I will have all the links in the show notes so people can find you easily. But just remind us where can people find more about you and your book? Where would they go online?

Bill 1:02:57
So probably the best portal to everything is the blog and you get on Google at google.com incase can’t find it. And you put in Google you put in Stronger After Stroke blog, you get those four words in there. I promise it’ll be the first hit. The book is called Stronger After Stroke. There’s a link to the book there. Although I guess it’s a link to amazon.com not your guys or wherever you guys buy stuff. You know, it’s the middle of the summer for you, isn’t it?

Bill 1:03:32
Well, it should be but we haven’t really had much of summer we’re experiencing the the La Nina, which is supposed to be a colder version of summer. So I can’t say that we’ve been to the beach more than about three or four times this year. We’re normally we might go 15 or 20 times so it’s been a very mild and not summery summer.

Bill 1:04:02
Well, we’ll look forward to that going into summer because we’re having the polar vortex right now we’re very cold air from the Antarctic from Canada is just sweeping down. We’ve had crazy weather events. Actually, I forgot what my point was. Anyway, so the book is easy to find it just goes stronger after stroke you’re gonna find me no problem. And my my email address is strongerafterstroke@yahoo.com and feel free to ask me any questions that you have and I’d be glad to do my best to answer them.

Bill 1:04:33
Thanks for being on the podcast.

Bill 1:04:35
My pleasure.

Intro 1:04:41
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatments, protocols discussed during any podcasts are the individuals own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 1:05:07
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

Intro 1:05:24
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:05:45
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 1:05:58
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Intro 1:06:15
We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

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As stroke survivors in rehab reach their plateau they are often discharged. Peter G Levine a clinical researcher says that this is when the real work starts As stroke survivors in rehab reach their plateau they are often discharged. Peter G Levine a clinical researcher says that this is when the real work starts Recovery After Stroke 1:06:36
134. From Anxiety To Calm In Just A Few Sessions – Bill Gasiamis with Scott Stevens https://recoveryafterstroke.com/from-anxiety-to-calm-in-just-a-few-sessions-case-bill-gasiamis-scott-stevens/ Mon, 22 Feb 2021 12:14:00 +0000 https://recoveryafterstroke.com/?p=5881 https://recoveryafterstroke.com/from-anxiety-to-calm-in-just-a-few-sessions-case-bill-gasiamis-scott-stevens/#respond https://recoveryafterstroke.com/from-anxiety-to-calm-in-just-a-few-sessions-case-bill-gasiamis-scott-stevens/feed/ 0 <p>Scott Stevens is a father and husband who had a stroke at 44. Listen to how he went from anxious to calm in just a few coaching sessions</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/from-anxiety-to-calm-in-just-a-few-sessions-case-bill-gasiamis-scott-stevens/">134. From Anxiety To Calm In Just A Few Sessions – Bill Gasiamis with Scott Stevens</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Scott Stevens is a father and husband who had a stroke at 44. Listen to how he went from anxious to calm in just a few coaching sessions

Socials:
https://recoveryafterstroke.com/coaching/

Highlights:

00:40 Introduction
01:19 Cryptogenic stroke
07:54 Positive impact on Scott Stevens
12:08 Post-stroke challenges
13:45 Help from Bill Gasiamis
17:25 Tough love
21:55 Steps that Scott Stevens take
29:42 Scott Steven’s advice
36:08 Time management

Transcription:

Scott 0:00
Yeah, what choice have you got? I mean, you’re the guy who knows what he’s talking about. And if you’re saying, like a bit of tough love is good for you, then, of course, you know, I’ve got no choice but to take it on the chin and, in retrospect, take it on the chin and listening to what you had to say to me, was a really important part of me turning this journey around to a more positive approach.

Intro 0:27
This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

Bill Gasiamis
Bill 0:40
Bill from recoveryafterstroke.com This is Episode 134. And in this episode, we will be talking about overcoming anxiety, how stroke affects your identity, nutrition that supports the brain, the benefits of sleep, and plenty more. And my guest today is Scott Stevens who was a fit and active 44-year-old who experienced a cryptogenic stroke about six months ago before this recording. Scott, welcome to the podcast, mate.

Scott 1:11
Thanks, Bill.

Bill 1:12
Scott, tell us a little bit about what happened to you how you became a stroke survivor.

Cryptogenic stroke

Scott 1:19
Well, my stroke happened in August 2020, just to cap off a wonderful year for everybody. But I returned from a bike ride early one morning and I was sitting down having coffee, and then all of a sudden became confused and all those classic stroke symptoms.

Scott 1:37
Weakness down my left side, and I pretty quickly realized that I certainly was not right. And I suffered from an ischemic stroke. So I had a clot, which I still don’t know what it was caused by.

Scott 1:49
So I guess I was very unlucky, I guess you can call that a cryptogenic stroke. But yeah, I was just really unlucky. And so after hospital, I spent three weeks in hospital, and slowly during that time I regained my movement. And had been working on eversince. So that’s basically the story.

Bill 2:11
So it’s February 2021. Now. So you’re about six months beyond stroke, what were some of the things that you had to deal with, and still are dealing with, beyond stroke, what they leave you with what kind of deficits and challenges?

Scott 2:29
Well, I think I mean, you and I had this sort of we messaged about this during the week, but I guess I wouldn’t really call them a deficit at the moment. But I do have some odd feeling on my left side, which doesn’t leave me at all.

Scott 2:41
And certainly fatigue is an issue, as I noticed with a lot of people. But that’s what it basically was like let’s be very careful of managing my fatigue. But I’m back at work and operating in that regard.

Bill 2:58
And sometimes you say that you have these kinds of zoned-out days can you describe those a little bit?

Scott 3:05
Well, I think they’re sort of they pass now. But the period of three or four months after the stroke was perhaps the time when I had that feeling of being zoned out, I guess you’d call it really bad brain fog, where I would feel like I was in a room with everybody.

Scott 3:20
And I was like watching a movie, but not a particularly good one. really odd feeling in retrospect, I guess I can put that down to anxiety related to the stroke. And not being particularly well, in a mental health space, which is certainly become a lot better now. I sought help and yeah.

Bill 3:45
So you were pretty healthy guy, you’re active. And all of a sudden, you’re recovering from an ischemic stroke. What’s at stake for you, in the time after your diagnosis and when you’ve come home from hospital?

Scott 4:01
Well, I guess yeah I was a healthy guy, I was right into my cycling. And I play a lot of sport. I’m a PE teacher. So I really that’s what was at stake was my livelihood, my identity as a PE teacher and as a guy who was pretty fit and active.

Scott 4:17
And all of a sudden that’s been taken away. And I’m sure that will come back because I’m headed. I think I’m tracking the right direction. But there certainly is a period of time where there’s a lot of uncertainty, and you don’t know what the future brings.

Scott 4:30
And that in itself creates anxiety and the anxiety really feeds on itself. And that was my period of time when I got home. I was always very uncertain about what the future would bring for me.

Bill 4:43
You did a lot of work with the doctors you had a lot of support. You had people that you’re seeing regularly about the mental health challenges in that time because it’s pretty common for people to struggle through stroke in the physical but also emotional and mental way.

Bill 5:03
At some point, but you kind of noticed that it was necessary to make some kind of a change in the way that you were approaching things. Why was it important for you to make a change in the way you’re approaching things?

Scott 5:17
Well, my family is really important to me, because my mental health was spiraling, really, I wasn’t engaging with my children in the way I would like and I really think if I’m honest, it was impairing my ability to recover.

Scott 5:30
Because I wasn’t sleeping, and I wasn’t resting effectively. And, I just wasn’t thinking clearly and I knew that if I wanted to recover, or make some recovery, I needed to look after my mental health.

Scott 5:30
So I spoke to my wife, and we sought help. And I think actually, Bill, what you were a capital, say, because you remember getting in touch with you via my occupational therapist. And he, I remember you suggesting that perhaps I would benefit from seeking some help around the mental health space. Yeah. And that was the real catalyst for me. So as soon as I saw that, things turned around. Yeah,

Bill 6:12
I know, you’d started to turn around what? What I’m curious about was, you know, in that moment, in the moment, or the days or months before you made a change, was there something preventing you from making that change to start thinking about this as a holistic kind of recovery, rather than I’ve just got to get my ischemic stroke sorted?

Scott 6:33
Yeah, well, I think because, I mean obviously, I’ve never had a stroke. And this is really uncharted territory for me. I mean, I thought I would just sort of spontaneously and naturally recover.

Scott 6:47
And then I became aware of your approach. And that was a more holistic approach. And then they to really get everything in line, and then the recovery can get some momentum, and that was the turning point.

Bill 7:04
Did you have a time in your head about when that’ll needed to happen by?

Scott 7:12
Well, the trap I fell into is because I thought I wanted a definitive answer around when I would be better. And that was the mistake I fell into because every stroke is different. And I would ask people who I knew had strokes, I would ask them, how long does it take you to recover? When did you get this back? When did you get that back?

Scott 7:32
And of course, They can’t give me an answer that relates to me, because every stroke is different. And all I knew that was that I needed to start looking after those things that would contribute to recovery and talking to people as the only way you can develop that knowledge. And I guess in many ways, I’ve developed that knowledge by talking to, you.

Positive impact on Scott Stevens

How to manage setbacks after stroke
Bill 7:54
What does it mean to your life, when you make that kind of a change? When you shift your perspective from going I’m just going to get my head sorted to I am going to look at the whole me and work on the entire me. How does that impact your life in a positive way?

Scott 8:16
Well, I think it starts to embed behaviors. I mean, forget about the stroke where you start to embed behaviors into your life that you can carry on beyond recovery, I guess, I mean, I guess the recovery doesn’t stop it continues, It’s a bit of a journey, isn’t it? You’ve indicated this you’re nine years out is that right?

Bill 8:35
Yeah, I’m 9 years out this month. Yeah.

Scott 8:38
Yeah. So as you well know, it continues I just get to 12 months ago right on fixed and I think I’ve got behaviors in place now where already I’m seeing a difference in like the way I relate to my family the way I approach things and certainly de stressing and relaxing and and building in meditation and effective sleep habits and sleep hygiene and good dietary practices. And they’re things that have already made a difference. Stroke aside.

Bill 9:10
Well done, how old were you had the stroke?

Scott 9:14
44.

Bill 9:15
Too young. There’s never a right age for stroke is there? 44 is too young man.

Scott 9:22
Yeah.

Bill 9:23
What was your typical day filled with?

Scott 9:27
Pre-stroke or post-stroke?

Bill 9:29
Yeah, pre-stroke.

Scott 9:30
Pre-stroke well pre-stroke I would. typical day would be getting out very early in the morning, heading out for a bike for some exercise, and then I would return breakfast with a family and my wife and I both teachers and our kids go to the same school that we teach at so we would all head off together.

Scott 9:50
So it was a busy, busy schedule. So that was a typical day for me. So it hasn’t changed a whole lot. Like I’m not teaching it the moment I’m in another role at the school, which has been great for my recovery, but my great hope is to get back to teaching, but not to get back to a sort of life where it’s just so high paced that you can’t keep up. And you don’t know what’s going on.

Bill 10:14
So how long were you in China before the stroke happened?

Scott 10:19
Bout two years.

Bill 10:21
You’re coming to us from China. So it’s a little different. Do you feel like it’s a little different in China than it would have been if you’re at home in Australia? Do you have a different kind of process towards the way you’re looking after yourself? Because you’re not home, around family, friends, all that kind of stuff?

Scott 10:45
Yeah, well, I think isolated is actually not far from the truth. I mean, I went to hospital they did a great job of saving my life. I mean, it was a serious stroke was a massive stroke. But what’s really interesting is that you don’t have that ability to relate to the doctors in a way that you would in Australia.

Scott 11:03
And ask to get answers to the questions that you want answers to. I mean, their approach was certainly I made a pretty good recovery in the first month or so. And I went back for my follow up, and my neurologist, I must admit, I will give him credit, he did a great job in saving my life, the day of the stroke, get all the right things. But he certainly didn’t fill me with encouragement when it came to my recovery. He was particularly pessimistic. And that seems to be the way that things happen here.

Bill 11:40
Yeah. And that’s the one thing you need when you’re recovering from a stroke. You want a little bit of hope at the end of the tunnel, is that not right?

Scott 11:48
Oh, yeah, absolutely. And I think you have to provide that hope yourself. And I guess that’s what my recovery looked like, or still looks like it’s I’m doing it myself. Because you don’t have access to the allied health that you would in Australia.

Post-stroke challenges

Bill Gasiamis
Bill 12:08
So you know, post-stroke. And this is probably a bit of a difficult question in that there’s maybe a lot of challenges. But what was the single biggest challenges you faced post-stroke, do you feel and bearing in mind now that you’re six months out now, but it wasn’t that long ago that you only one month out and two months out? So I’m probably keen to hear about what it was like at those first couple of months.

Scott 12:36
Well, I guess my biggest challenge was having been used to having complete control of my body, I was having to rebuild from almost scratch, from the ground up. And I’m not a particularly patient person. And I think that has been my biggest challenge is being patient forcing myself to be patient, and know that this was like a long time trying to find positives along the way and not get mired down in the doom and gloom.

Bill 13:07
There was there’s a lot of talk around, you know, delaying gratification, and the benefits that people experience when they delay gratification, are you somebody that perhaps previously didn’t really delay gratification?

Scott 13:25
Well, I guess I could, because it certainly wasn’t at stake what’s at stake now? Because I ration now and I’m too full on there, I’m just going to fatigue and it impairs my recovery. So I’ve certainly learned that there’s nothing wrong with delaying gratification and just being patient.

Help from Bill Gasiamis

Bill Gasiamis
Bill 13:45
Yeah. What would you say? I help you with the most?

Scott 13:51
Well, certainly, I mean, Bill, you probably got sick of me sending you messages in that third and fourth month, because I mean, I was terrified. I’m not afraid to admit that I was scared.

Scott 14:02
And knowing and talking to you, and being able to say to you, listen, I’m feeling like this, and this is what I’m really tackling at the moment. And for you to say, don’t worry, mate, that’s quite normal, you’ll work your way through it, there’s better days ahead, was really reassuring.

Scott 14:20
And that actually got me through a fairly dark period. And that enabled me to sort of sort through the mess. Now, I don’t know whether you recall there’s a period over Christmas just where I got in contact with you quite a bit because I was really struggling.

Scott 14:34
And I think that’s so important, being able to talk to people about what’s going on and connect with people who know, I mean, I know, I’m realistic enough to know that you can’t give me an answer in terms of my recovery. But just for you to be able to say listen, it sounds familiar, and you will get through it. That hope. I mean, I guess you offered me hope that things would improve.

Bill 15:02
Why was it important for you to have somebody there that can answer your questions, if not immediately? Because I never answered them immediately, always but.

Scott 15:12
You were pretty close.

Bill 15:13
Yeah. As close as I can possibly be to? Why was it important to have that there? How does that change things for you?

Scott 15:23
Yeah. Well, I think I’ll preface that a little bit, it’s important to have somebody who’s slightly removed from the immediate situation, which I guess you are in a way. Because I was just saying, a colleague yesterday, I’m almost at that point where I feel like I’m talking about the strike too much.

Scott 15:38
And, you don’t want to be bombarding people with stroke chat. And it’s not really good for me either. Because all it means is that I’m dwelling in the stroke, and I’m not moving forward. Whereas when I’m speaking to you, I can tell you how I’m feeling you give me an answer.

Scott 15:56
And to be really honest, it’s been a couple of times where you’ve fired back at me and said, listen, things could be absolutely worse mate, you need to be a bit more grateful. And now you’re smiling but I think there’s value in that as well.

Scott 16:12
Because I mean, this could be a lot worse. And I think having that gratitude, whether it be developed via something like you telling me really mate, you need to have a look at yourself, you’re being a little bit negative.

Scott 16:29
And if I developed like, just having that gratitude, it helps you understand that there is hope. And but you need to work for it. You can’t woe is me and speaking about how unfair this is, just does not work in this situation. And that’s what you’ve taught me?

Bill 16:48
I was doing the soft love, soft love, soft love, tough love.

Scott 16:52
Yeah, that’s right.

Bill 16:53
Every once in a while, you need a bit of tough love. And that’s only because what needs to happen is we need to get you thinking about all the good things that have come, all the positives that have happened, all the things that you have overcome and stop focusing on the things that haven’t.

Bill 17:09
Because focusing on those tend to get you’re stuck there. And what I liked about you was that you’re really comfortable in me giving you that tough love, and that you didn’t take it personally. And you knew that it was about me just trying to jolt you out of one of your states.

Tough love by Bill Gasiamis

Bill Gasiamis
Bill 17:25
And, and I think it worked well. And I’m glad that you didn’t take it personally and didn’t feel he’s another person who’s not listening to me or annoyed by me or whatever. So it was really good that you also took it on the chin so to speak.

Scott 17:42
Yeah, what choice have you got? I mean, you’re the guy who knows what he’s talking about. And if you’re saying, like a bit of tough love is good for you, then, of course, you know, I’ve got no choice but to take it on the chin and, in retrospect, take it on the chin and listening to what you had to say to me, was a really important part of me turning this journey around to a more positive approach.

Bill 18:08
That’s what I love about it. It’s that opportunity for you to get your curiosity sorted you, and then in the really difficult times actually get some really good answers. Because that’s how I become curious about what I can do to support myself and then curiosity evades me, and then I get stuck in in a really difficult time.

Bill 18:32
And if I don’t seek out help, then I can’t get that answer, or I can’t get that puzzle, the piece of the puzzle to move forward and I get stuck there. And then when I do get the piece of the puzzle to move forward, then curiosity kicks in again.

Bill 18:47
And then when I’m curious, then I’m in control of the recovery rather than me and sort of relying on somebody else. Who else did you go to before you got to me that kind of helped, but not really, with what you specifically needed from me?

Scott 19:05
Yeah, well, I had a good friend who I went to school within Australia who had a stroke around the time that you did, I think year 2012. So it was around the same time. And I guess there was a bit of a disconnect between what I needed him to tell me and where he was coming from.

Scott 19:27
I mean, he was well removed from the stroke like you are, but he certainly gave me tough love, but probably at the wrong times when I was really in an emotive state. Whereas Bill, you just need to have that timing the tough love was when I needed it, and when I was in a frame of mind to be able to handle it. And I think I may have relayed that to you that I really felt like the people I was talking to back home did not understand what I was going through.

Bill 20:00
It did sound to me like your friend kind of had a very different experience to stroke than we did and kind of got away with it a lot easier than we did. I know that stroke is serious either way, but it seems like he made a different recovery and therefore, was not able to relate to the type of recovery that you’re making.

Scott 20:20
Yeah, but his recovery was quite quick, really, compared to yours and mine. And I think maybe if I’m really honest, it was a little bit of not jealousy, but a little bit of, why can’t my recovery be quicker? And yeah, I got to hospital quickly and I’m just you know, I got my problem is, I got what fixated on you know, I got to hospital quickly, and I got treated quickly. So why am I not making a really quick recovery? And that’s not how it rolls.

Bill 20:55
That’s alright, remember early on when we were connecting after we got introduced by David. And we were chatting a little bit, and then I kind of put the hard word on you. And I said, maybe you should take up one of the coaching packages. What do you think about that? What made you feel comfortable to connect with me?

Scott 21:15
Well, I think certainly the fact that when I reached out to you this is prior to me taking on a coaching package that you were quick to get back to me. So let’s have a chat. And I think just the similarity between our stories and the fact that you understood where I was coming from.

Scott 21:32
And the fact that you knew that perhaps I needed some one on one help was, and you had that insight that sort of resonated with me quite a bit. And I thought, well, there’s nothing to lose here. And nothing to lose, and is plenty to gain by, you know, using your experience and your approach to recovery.

Steps that Scott Stevens take

Bill 21:55
What were the three things that you are taking action on to achieve your milestones?

Scott 22:03
Well, I guess I’m making sure I look after myself physically. And my approach is, if I look after myself, physically and get my fitness back and my love of movement, I mean, I’ve just actually come back from a run. But so that’s one thing. So making sure I continually moving and rewiring those pathways and trying my brain to move again.

Scott 22:27
And so that’s one thing. The second thing is certainly and I’ve got this from you is nutrition. And just avoiding all those things, which that brain doesn’t need, like grains and gluten products and alcohol. Well, we’ve had this conversation.

Scott 22:47
Well, yeah, certainly alcohol and sugar. I’ve avoided sugar, based on the conversations I’ve had with you. And attending to my need for sleep has been really important. And I find that if I don’t get enough sleep, and I don’t attend to my fatigue, then I really noticed a flare up of the symptoms. And I don’t feel well. And when I don’t feel well, I start to get negative again.

Bill 23:16
So you become aware of the cycle that gets you into that bit of a negative zone?

Scott 23:20
Oh yeah, absolutely.

Bill 23:21
Yeah, that’s brilliant. Getting sleep, if I could make anyone do anything, if I could make them do anything, it would be to get them to go to bed and sleep more. That would be the one thing that I would make them do. Because that does do that. It breaks that circle of the negative spiral. It starts the circle off for the positive spiral.

Scott 23:40
Yeah.

Bill 23:42
I love the sound of the things that you’ve done. What was the big aha moment? Have you had one?

Scott 23:47
Well, I don’t know whether they explain one moment because I don’t think there is one there’s not singular moments in recovery like this. I don’t think I’ve found that out already. But what I did notice, during the Christmas break, we’ve just had a Christmas break like a month ago, I went away with my family and we spent time together.

Scott 24:08
And the aha moment, I guess, if there was one was, I can still do the things that I really love. And I did them like running and cycling and spending time with friends and family. Yeah, it feels different but I can still do it. And at that point, during that time, there was a three-week period where I just started to feel a lot better.

Scott 24:31
And I went back to work after Christmas and people were saying to me, Listen, you look a lot better, you sound a lot better. And I recon this is a real confidence thing. So I gained confidence and then you start to keep doing those things that have contributed to that better feeling.

Scott 24:49
Since I’ve gone back to work, I’ve really started to make sure that I’m sleeping well, eating well, hydration is huge as well. I know you asked for three there’s a fourth, hydration is huge.

Bill 25:06
What were some of the fast wins that you got when we first started chatting, you know, those little things that got the momentum going, what were some of those little easy ones to tick off.

Scott 25:20
Well I think keeping a diary of what the good things that was a really positive thing that I did. So I started listing things I couldn’t do yesterday, and things that I can do today. And very quickly, it starts to build up to a bigger picture. And I think very early on when we spoke you talked about maybe keeping a journal or a diary of where the recoveries tracking.

Scott 25:46
And I still do that. Yeah. And my colleagues at work have started helping me out. So I’ll go into work. This is really quite good, actually. And they’ll get post-it notes, and they’ll ask me, okay so this week, what have you achieved, and I’ll tell them, and then I’ll go in on the Monday, and then my computer screen will be full of post-it notes. It’s like my wall of positivity. And it sounds really corny, but it works. Because I can’t help but see the things that I’m achieving.

Bill 26:20
Often stroke survivors don’t start noticing the positives, they notice all the things that they can’t do. And Fair enough, there’s probably a lot of things that stroke survivors can’t do so you can understand that.

Bill 26:31
But that takes away from the wins that people have had. And it’s really good to get reminders wherever those reminders come from and if you can make a habit of reminding yourself, it’s even better, but the fact that your colleagues are getting involved. Thank them for me.

Scott 26:48
It’s great. It’s really good.

Bill 26:50
So before stroke, you had a reality, you had a kind of a life reality and the things that you did, then you had a stroke. And then you had a new sort of substituted reality, of uncertainty of challenges. Since coaching started, what’s your reality, like now?

Scott 27:09
Well certainly a lot more positive. And I feel like, I mean, nobody can take me back to pre-stroke, I now understand that that can’t happen. I mean, and to battle that to create friction there, keep wanting to go back to pre-stroke, I was talking to a guy last night from England, actually, who’s a running coach and his back running, and he had a strike two years ago, very similar to mine.

Scott 27:36
And he was saying that he feels like if he keeps going back to wanting to be like he was before stroke, and battling that, marry that up against his new reality, it’s almost insanity, it would drive you nuts.

Scott 27:53
So I’m trying to be comfortable with my new approach to life. And, I mean, who knows BIll I might get back to a point where this recovery takes me to a point where I’m really comfortable with my new normal, and I think that’s okay to be comfortable with the new normal.

Bill 28:14
Yeah. And going back to what life was like before stroke is the time that stroke was about to happen, it was just before stroke. So it’s probably not a good place to go back to go to, we need to go somewhere else, right?

Scott 28:28
Yes, right. Absolutely.

Bill 28:30
So now that you’ve achieved these things, what are you looking to do now? What else is on the horizon?

Scott 28:40
Well, I’m just really looking forward to continuing to feel good. Because I mean, let’s face it, I mean, post-stroke a couple of months, you you feel pretty miserable, you’re tired, you’re worried about the future. And then when you make a turn, and you start seeing momentum and recovery, it feels really good.

Scott 28:59
And you feel like you can build on something. That’s not to say that I don’t have moments now where I still feel overwhelmed. I mean, I’m only six months out, but I’m sure in the next six months, I’ll feel overwhelmed at stages too.

Scott 29:11
But I think what I want to achieve really is to be able to help people who were in their early phases of their recovery, whether it be talking to them and offering I guess what little advice I can give, given that I’m so early on in my journey. But as you well know, and as I found out, talking to people is so cathartic and so important in the journey. Because it’s a lonely place post-stroke is a lonely place.

Scott Stevens’s advice

Bill 29:42
Yeah it can be man it can be, people don’t understand you and family doesn’t know what it’s like and fair enough. We wouldn’t want them to know what it’s like. So, that makes sense. What advice would you give to somebody who’s in the same position you were in back then?

Scott 29:59
Well, I mean, Now without sounding like an advertisement for your services Bill, I would say they need to make contact with you and try and get that one on one chat going and try and gain an understanding of what they can do to take control because as soon as I felt like I was in control, I mean, it’s really hard to articulate what that feeling was to feel like you’re in control, again of your recovery.

Scott 30:24
And I mean, to tell a little bit of a story, I remember sitting at my desk at work, and just being and my colleagues in the office will tell you, there was a period of time where I was just petrified. Because I was so scared about what was ahead of me.

Scott 30:39
And, even though I had lots of people around me, who understood that I had a stroke, they certainly didn’t understand what I was going through. And it was a very lonely place, so my advice would be to reach out and talk to people, certainly talk to people who are might be just a little bit removed from your immediate situation because then you can really speak your mind and feel comfortable.

Bill 31:06
Yeah, good advice man. Is there anything that looking back now you would have done differently early on?

Scott 31:17
It’s a long time ago, and my head was a bit cloudy to be honest, I think I would have taken like I read early on, even when I was in hospital, I did a lot of reading about what stroke recovery was like a maybe what I could expect. And I guess what I would have done differently is being far more proactive in addressing the mental health side of things.

Scott 31:43
Getting help very early, I mean, matter of fact, with everybody, and I’m happy to share this with friends as well now, I was depressed, and I was so anxious that it was impeding my recovery. I’m sure I probably could have let go of that a lot earlier, my recovery, my turning point would have been a lot earlier as well.

Scott 32:05
But in hindsight, I would have taken that seriously. Because it was I read about it. And because at that immediate moment, I didn’t feel like I was in a bad place. I didn’t take it seriously. And it needs to be taken seriously because it can hamper your recovery.

Bill 32:23
Yeah, it is one of those things that people don’t realize they’re in that state at that time, they don’t realize they might be experiencing a little bit of depression. So if somebody happens to be kind enough to tell you, and risk your wrath, then maybe pay attention and listen to them is basically what you’re saying.

Bill 32:43
And then seek help get curious about why they said that, and then maybe seek help a little bit earlier, rather than later. Because if anything is going to come out of seeking help, it’s just support, that’s all that’s going to come of it nothing else.

Scott 33:00
And reassurance in many ways.

Bill 33:03
Yeah, reassurance is something I can relate to, to it’s what I offer people is what I needed, nine, you know, nine years ago when I was going through it, and I didn’t have it. So I figured there’s definitely an opportunity for people to experience more of the things that you got, and and if they know where to go to get that, then they made a better turning point a quicker turning point in the way they approach their recovery.

Scott 33:32
Well, I mean, there’s I mean, I’ve gained a lot out of, you know, signing up to do one on one coaching with you, because there’s so much more like I think I emailed yesterday about the guest you’ve had on your show. I mean, you really do get exposed to courageous, I mean really brave people.

Scott 33:53
And there’s been moments where I’ve watched your podcasts, and your interviews where I felt like that is perhaps the best approach to recovery that I’ve ever seen, you know, with a range of your guests, because they’ve lived it. And I think the number one thing that I’ve built, we’ve spoken about a lot of stuff, the number one thing that I’ve got from you is reassurance during a very scary time, and I’m really grateful for that.

Bill 34:23
Yeah, my pleasure. We spoke you’re referring to Duncan Campling from Episode 133, who is overcoming locked-in syndrome. And on the interview, I had to speak to him with a recorded voice that he answered my questions and it was all pre-recorded.

Bill 34:43
I asked him the questions and then he pre-recorded them and then sent me the answers because he can’t speak it. He has dysarthria and his vocal cords don’t operate properly. So he has a adapted iPad that has a British accent that talks the way that he would have talked to he said previously.

Scott 35:06
So despite what he’s been through the fact that he was smiling and laughing with you, I found just unbelievable. And that really will stay with me, I think.

Bill 35:17
Yeah he’s a good guy, we had a laugh, so let’s do a little bit of a recap, you went from feeling quite anxious, and quite concerned about what the future holds, you know, you didn’t go through a dark times there experiencing, you know, depressive symptoms, and all those types of things.

Bill 35:34
And you’ve kind of moved from that, to feeling in control of your recovery. You’ve certainly taken your mental health seriously. And you’re continuing to do so you’ve taken care of things like your nutrition, and you’re getting active and moving as much as possible. And you’re sleeping and you’re paying attention to your fatigue and how you’re feeling about your energy levels during the day.

Time management

Scott 36:08
Yeah, absolutely. Well, I certainly know that if I do too much, and I haven’t, well, the weekend is really the time where I bank that sleep. And that sets me up for the week. If I don’t get enough rest, have late nights and I mean, I mean you’ve indicated to me that during your recovery, and this is great advice that you have to be very, you have to prioritize where you can put your time.

Scott 36:33
And that’s what I’m becoming better and better at doing that. Like, you can’t go out every night and have dinner with friends. And you can’t, the risk of losing sleep, you can’t do that. And it might not be forever.

Bill 36:47
That’s right it’s definitely not it does change so early on, we would leave parties and events early. And now we can stay a bit longer, it doesn’t really matter anymore. I just know that that next day, I’m not going to have too much planned or too much to do.

Bill 37:05
Because if I wake up at my regular wakeup time, which is 6:30 to seven o’clock, no matter what time I go to bed, that’s what time I wake up. I know that if I’ve had a late night, that next day better be a light day, it better be a day where I don’t have much to do. So I just plan for that late night. And and it works out well. And the following day, I just chill out and go to bed a bit earlier.

Scott 37:30
Yeah, I think it’s really important there to think about. One thing I’ve learned and certainly my wife has been fantastic with this, she knows that that fatigue is so such a big thing with this recovery that she has helped develop routines, or she has developed routines in our house to enable me I’m really grateful for this enable me to get enough rest.

Scott 37:54
So it means that I’m in bed really early and far earlier than I would have been in the past. And I’m not around to help all the time. But if I can get the recovery, right, I will be in the future. I’ll be as good as I can be. And I think she understands that she’s learning patience as well. That’s huge mate.

Bill 38:22
A test to everybody tests everybody in the families, and mate look, I really appreciate you coming on and sharing your story and your journey with me. It has been and it will continue to be a pleasure to support you and work with you. So thank you so much.

Scott 38:37
No worries thanks, Bill. I hope more people have the chance to engage with you in the way that I have.

Bill 38:44
Thanks, mate.

Bill 38:45
Well I hope you enjoyed this episode. If Scott’s story has resonated with you. And you’d like to know more about recovery after stroke coaching simply go to recoveryafterstroke.com/coaching, where you can find out how you can also get recovery after stroke coaching. And who knows, maybe take your recovery to the next level.

Intro 39:11
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

Intro 39:28
Opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 39:38
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 39:50
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as a health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives.

Intro 40:06
Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 40:15
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 40:29
If you are experiencing a health emergency or think you might be call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information and our content we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

Intro 40:52
If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website I follow that your own risk and we are not responsible for any information you find there.

The post 134. From Anxiety To Calm In Just A Few Sessions – Bill Gasiamis with Scott Stevens appeared first on Recovery After Stroke.

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Scott Stevens is a father and husband who had a stroke at 44. Listen to how he went from anxious to calm in just a few coaching sessions Scott Stevens is a father and husband who had a stroke at 44. Listen to how he went from anxious to calm in just a few coaching sessions Recovery After Stroke 41:07
133. Overcoming Locked In Syndrome – Duncan Campling https://recoveryafterstroke.com/overcoming-locked-in-syndrome-duncan-campling/ Mon, 15 Feb 2021 11:30:07 +0000 https://recoveryafterstroke.com/?p=5779 https://recoveryafterstroke.com/overcoming-locked-in-syndrome-duncan-campling/#respond https://recoveryafterstroke.com/overcoming-locked-in-syndrome-duncan-campling/feed/ 0 <p>Duncan Campling has been in recovery from locked-in syndrome since 2018. The father of two is living in a nursing home and due to Covid has not been outside in 9 months</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/overcoming-locked-in-syndrome-duncan-campling/">133. Overcoming Locked In Syndrome – Duncan Campling</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Duncan Campling has been in recovery from locked-in syndrome since 2018. The father of two is living in a nursing home and due to Covid has not been outside in 9 months

Socials: https://www.instagram.com/duncan.campling/

Highlights:

00:44 Introduction
01:02 Locked-in syndrome
01:37 Living with Dysarthria
04:08 Two brainstem strokes
10:44 Sharing the stroke journey
15:37 Mindset during hard times
18:33 Flatlined in the ambulance
21:31 Lesson from a stroke
26:10 Assistance required

Transcription:

Duncan 0:00
When the first ambulance came to pick me up. I had completely flatlined. So I had no pulse. Also, I was totally motionless and paralyzed. The Medical Technician thought I had died and called my time of death in front of me, I wanted to stay I’m alive, but nothing came out. Shortly afterward, I was worried about being buried alive.

Intro 0:31
This is The Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

Duncan Campling
Bill 0:44
Bill from recoveryafterstroke.com This is Episode 133. My guest today is Duncan Campling. Duncan experienced two brainstem strokes in March 2018, and when he regained consciousness, he was locked in fearing he would be buried alive.

Overcoming Locked In Syndrome

Bill 1:02
According to the website, rarediseases.info. Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of the voluntary muscles except for those that control the eyes.

Bill 1:16
People with locked-in syndrome are conscious and can think and reason but are unable to speak or move. Vertical eye movement and blinking can be used to communicate. Locked-in syndrome may be caused by a brainstem stroke, a traumatic brain injury, tumors, diseases of the circulatory system like bleeding.

Duncan Campling is Living with Dysarthria


Bill 1:37
Diseases that destroy the myelin sheath surrounding nerve cells like multiple sclerosis, infection, or medication overdose. Duncan is also living with Dysarthria, which is a motor speech disorder in which the muscles that are used to produce speech are damaged, paralyzed or weakened.

Bill 1:56
The person with dysarthria cannot control their tongue or voicebox and Duncan will be speaking with me via an adapted iPad, which uses text to voice software to allow him to communicate. His answers were pre recorded to make the interview process much smoother.

Bill 2:13
Now, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

Bill 2:23
I too am a three-time stroke survivor and I’ve built for you what I was missing when I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

Bill 2:33
Support packages give you access to a variety of tools 24 hours a day seven days a week so that you can also work on other areas of stroke recovery, like adjusting to your new normal, and even managing the grief you may be feeling for your former self.

Bill 2:47
With tailored support available and designed for you. You can now try our recovery after stroke catching free for the first seven days and get a full refund if you aren’t satisfied after 30 days.

Bill 2:57
For more information, just send an email to bill@recoveryafterstroke.com. I answer all my emails personally. And now it’s on with the show. Duncan Campling welcome to the podcast.

Bill 3:12
Thank you for being here, man. I really appreciate it.

Bill 3:21
You have been the most keen person to get on the podcast now. I’ve had a lot of keen people to get on the podcast. You have just skyrocketed right through you are the keenest person.

Duncan 3:39
Yeah.

Bill 3:40
I really get excited when somebody goes out of their way to be on the podcast and organizes everything because it means that the podcast is valuable to them, and that I’m doing a good job. I’m gonna get stuck into it. First question that we prepared earlier was tell me a little bit about what happened to you?

Duncan Campling had Two brainstem strokes

Duncan Campling
Duncan 4:08
I had two brainstem strokes in March 2018. I’m 50 now, but I was 47 when they happened, I had a terrible headache. I called my manager at work to let him know I’m going to try and sleep it off as I often worked from home.

Duncan 4:30
I next remember having an out of body experience. from the ceiling. I saw my wife giving me CPR on my bed. My condition was eventually diagnosed as locked-in syndrome.

Duncan 4:46
Mine is from strokes but you can acquire locked-in syndrome from other things like ALS I’m partially recovered, but I still have a lot of progress to be made, locked-in syndrome is where you are completely paralyzed, but 100% cognitive.

Duncan 5:08
I can now move all four limbs, but they are very weak, especially my legs. That’s why I moved around in a powered wheelchair. Locked-in syndrome is so rare, there’s very little research done on it because it would only aid a small population.

Duncan 5:26
I’m often one of the few people with locked in syndrome a medical professional may encounter in their career. As you know, strokes are often caused by blood clots, or blocked arteries.

Duncan 5:40
But according to multiple CT and MRI scans, my strokes were caused by a thin artery in my brainstem. I also have the condition dysarthria. My vocal cords were unscathed from my strokes, but the muscles used for speech in my face and throat are very weak.

Duncan 6:01
People sometimes wrongly assume I’m mentally challenged, because I have issues forming words. Sorry, if my electronic speech is disjointed, and lacks enthusiasm. I drink liquids thickened with cornstarch as I still currently have swallowing issues.

Duncan 6:22
Shortly after my strokes, I took liquid food directly pumped into a tube inserted into my stomach. Now I can orally eat most foods, including my favorite Indian food. I’m currently using an adapted Apple iPad with a speech synthesizer to communicate with you. I also use it to surf the web and post daily on Instagram.

Bill 6:52
Yeah, you do post daily, you’re all over my Instagram feed. I can’t get you off. And that’s a good thing. That I’m not telling you to get off. It’s interesting how I hear this voice and I see you, and even though I’d never heard you speak before, and I don’t know you. I still say that voice and I’m thinking that’s too English for you. Would you agree? That’s a good English for you?

Duncan 7:29
Yeah.

Duncan 7:32
Awesome. How bizarre would it have been for you to have to experience seeing your wife floating above you? When you are having CPR to try and save your life and they were trying to resuscitate you? Very bizarre and strange. And did she come to you like an angel? Or was she just your wife going snap out of it?

Duncan 8:11
Wife.

Bill 8:12
Just your wife sitting there yelling at you telling you off?

Duncan 8:18
Yeah.

Bill 8:21
All right, Question two. How has brain injury affected others in your life?

Duncan 8:31
I lived in a nursing home about 10 miles from my two sons. Obviously, I’m unable to work and provide for my family. However, the biggest effect to other people is not being able to provide life advice in person to my preteen kids, and not being there to shape their future.

Bill 8:56
Yeah, man, that really touches me because when I was going through my own stroke recovery, one of the first things I realized was that my boys as teenagers, they might lose their dad because you’ve got that serious, you know.

Bill 9:09
And because I had time in between bleed one and bleed two and then bleed three, which for me happened over about three years. I spent a lot of time making up for those things that I feel like I hadn’t done properly or hadn’t done enough of.

Bill 9:30
And that most of that stuff was me apologizing and saying sorry for being an idiot dad, or for not understanding you or for yelling and screaming at you when I had you know, not enough resources to express my myself properly. And I just resorted to being a caveman you know? Does the iPad support you in at least beginning some of those conversations and having some of those conversations?

Duncan 10:05
Yeah.

Bill 10:06
Yeah, that’s good. Is that a sense of relief for you? Is it something that you want to continue doing I imagine?

Duncan 10:19
Yeah.

Bill 10:21
Yeah. Good, man. Awesome. I’m so glad. Isn’t it fabulous that iPads exist? Isn’t it fabulous that you and I can connect on the other side of the planet with this machine. And even though your vocal cords are not working properly in your muscles are not working properly. We’re still having a proper conversation.

Duncan 10:42
Yeah.

Duncan Campling sharing his stroke journey

Bill 10:44
That’s brilliant, man. All right. Question three. Why is it important for you to share your stroke journey?

Duncan 10:57
To give some motivation to other stroke survivors, and hopefully give them some energy when necessary. I’m not competing who’s had the worst stroke journey, but daily life is often bleak for me. Telling my story also serves as a great workout motivation exercise, and is a huge mental release for me.

Bill 11:22
Yeah, so you explained that your life is bleak? Is that something that you feel it’s bleak all the time or just sometimes?

Duncan 11:38
Sometimes.

Bill 11:38
So there are days and moments in the day which are not bleak or the opposite of bleak?

Bill 11:46
Yeah.

Bill 11:47
Is talking to me the opposite of bleak?

Duncan 11:53
Yeah.

Bill 11:55
Come on man, I hope so.

Bill 12:01
Brilliant man. Next question. What did you miss the most about the old you?

Duncan 12:09
It saddens me to know my old life is not waiting for me. I was understandably terminated a week after my first stroke as I was by choice, an independent contractor. Also, I’m a 35-year electric guitarist, but only as a hobby.

Duncan 12:30
Playing the guitar post-strokes has not been possible for me as my fine motor skills are still weak and my hands feel very tight. To my horror, my house was sold 10 months ago. My retirement savings were liquidated early and spent however, I miss most not living under the same roof as my wife and boys. That and having an ice-cold coke on a hot day.

Bill 13:03
An ice-cold coke. Are you not allowed to have an Ice-cold coke anymore?

Bill 13:20
Sometimes?

Duncan 13:22
Yeah.

Bill 13:23
Yeah awesome okay. So your home was sold without your consent while you were out of action completely gone in that time? Or was it sold at a time where you were not involved in the conversation?

Duncan 13:37
My consent.

Bill 13:39
You did give consent. Okay, but still difficult and horrible situation. Have you had any other medical complications following your stroke?

Duncan 13:58
Online I’m perfectly normal, but in real life, I am quite disabled. To answer your question. I was hospitalized about two years ago for pneumonia and separately for a gallbladder infection which lead to sepsis, but nothing directly related to my strokes. Also, not that there are serious complications, but post-strokes I’m super sensitive to sharp sounds and low temperatures.

Bill 14:32
Yeah, I can relate to sharp sounds and low temperatures. Sounds are one of those things that kind of makes my brain hurt. And temperatures are annoying because my left side is colder than my right side.

Bill 14:45
And it’s always really challenging. Before I knew about stroke before, it happened to me. When I saw somebody in a wheelchair, I just assumed that they couldn’t walk or move their hands.

Bill 14:57
I never assumed that there was additional issues that I had to deal with that I couldn’t say. I never, for one moment thought there are people who are sitting in a wheelchair are just not able to walk.

Bill 15:11
I never understood that not being able to walk is a serious complication. And it causes its own complications as well. And hopefully what this interview will do for people is create the opportunity for people to have more awareness that people that are in need of being in a wheelchair or an electric motorized wheelchair have other complicated needs as well.

Duncan Campling Mindset during hard times

Duncan Campling
Bill 15:36
And we might not be able to see them. But we need to know that it’s not just what you’re saying. It’s not just somebody sitting down in the chair. How are you managing your mindset to keep positive during the hard times?

Duncan 15:50
I tried to focus myself on making small gains, hoping that one day these minor gains will accumulate to more significant advancements, like walking and effectively talking. I also deliberately distract myself with music and Netflix.

Duncan 16:12
Like everybody.

Duncan 16:15
Yeah.

Bill 16:16
What’s your favorite band?

Duncan 16:26
AC/DC

Bill 16:26
AC/DC Haha, that’s my favorite band. Okay, what’s your favorite album?

Intro 16:40
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid In case I make matters worse?

Intro 16:57
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

Intro 17:09
If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke?

Intro 17:23
These seven questions other ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

Duncan 17:42
Powerage

Bill 17:44
Powerage, nice, old school somebody that appreciates the back catalogue. I love it well done man I love powerage too. They were one of my favorite bands growing up and I’ve been to the Melbourne concerts probably five times or something like that amazing show. What was the hardest part of your journey so far?

Duncan 18:15
One of my biggest shocks was when I realized my multiple medications wouldn’t repair me and we’re designed to manage pain and anxiety. However, the hardest part of my journey was when the first ambulance came to pick me up.

Duncan Campling Flatlined in the ambulance

Duncan 18:33
I had completely flatlined. So I had no pulse. Also, I was totally motionless and paralyzed. The Medical Technician thought I had died and called my time of death in front of me.

Duncan 18:50
I wanted to stay on alive but nothing came out. Shortly afterwards, I was worried about being buried alive. Also, for the first three months, I was totally detached from reality and partially detached for 18 months.

Duncan 19:08
Pointing to letters on a piece of paper. I told my wife I created U2’s sound and I co-wrote Sweet Home Alabama, even though I was four when it was written. I remember telling her all my royalties were directed to an untraceable Swiss bank account and not to worry as we’ll go out for anything.

Duncan 19:35
I’m still amazed. I actually believe that. Also, I thought one of my therapists was shaggy from Scooby Doo. My biggest accomplishment was about one year ago when I could lean forward in my wheelchair. It allowed me to lean over a sink and brush my teeth. My old dentist would be proud of me.

Bill 20:04
That is hilarious. You thought you were the person who co-wrote Sweet Home Alabama a band called Lynyrd Skynyrd. And shaggy from Scooby-Doo was involved with your life? They must have been some serious drugs you were on man.

Bill 20:34
I love it. That’s hilarious. I had a friend of mine who also had a serious stroke many, many years ago. And when he was recovering in hospital, his friends and his wife would read him the front page of the newspaper.

Bill 20:53
And at that time, unfortunately, in Melbourne, there was a big mob war happening. And there was a lot of people getting killed on a daily basis. And he thought that he was one of the people that was involved, the main mobster, and that their job, you know, was to run this war or be a part of this war.

Bill 21:16
And he would tell his friends like he was telling your family, he will tell them that. Yeah, he was with this particular mob boss. And they were, you know, running these scams, and they were doing things.

Lesson from a stroke


Bill 21:31
And he had been in the hospital for six months. (inaudible) It’s so funny that side of stroke and that side of what the brain does, to, I’m not sure to amuse itself, or what does it do? Who knows? What has stroke taught you that you didn’t expect?

Duncan 22:01
I assumed I was invincible before my strokes. I now appreciate being really healthy. Not that I was unhealthy before. I also limit my screen time and try to keep my mind healthy with word games, etc. I’m now on level 1890 of wordscapes.

Bill 22:26
Okay, so you’re trying to limit your screen time? Are you having any success?

Bill 22:41
Sometimes. Yeah, I know what that’s like. So do you still feel that you are healthy? Even though you got all these challenges that are related to the struggle, all these extra little bits and pieces that are there?

Duncan 23:03
Yeah.

Bill 23:07
How has the stroke impacted your feelings and emotions?

Duncan 23:13
I have all my thoughts and memories, pre and post-strokes. But my emotions are much more erratic now. For example, I sometimes laugh and cry at the same time. I assumed I’m losing it. But apparently it’s a common side effect of strokes.

Bill 23:37
Yeah, me too. It’s funny, the emotions, they come on really dramatically. And then they go. So in the beginning my wife couldn’t really deal with it because I would watch a movie and cry at something cute, like a cat or something, you know?

Bill 23:56
And I didn’t know how to tell her that I’m not sure why I’m crying. I’m just crying, you know. So a lot of stroke survivors struggle with that. Especially. It seems to me men seem to struggle with that more because we’ve always been told not to cry, and we’ve always been told to be tough and to get over it.

Bill 24:16
So it’s interesting that it’s a difficult thing for people to handle. But it does get better. I found that it does get better. But sometimes it’s still there kind of just pops up out of nowhere. You have a similar experience. It’s slowly getting better?

Duncan 24:38
Yeah.

Bill 24:39
Awesome. How does intimacy play a role in your life these days?

Duncan 24:46
For me, relationships have obviously been restricted to online contact during the pandemic. Also, I have strained a few friendships post-strokes but I always reach-out to remind them, I’m still here. However, I remain positive about the future.

Bill 25:09
Yeah. COVID complicated stroke recovery for so many people, it completely changed their ability to continue to see people and get out and about and grow their networks or still continue to hold on to their networks. And that’s a big issue. So your friendships with your friends have become a little distant, would you say?

Duncan 25:44
Yeah.

Bill 25:45
It’s a common thing. And it’s something that I went through as well. And I went through the stroke in times when there was no COVID. And still people became distant because they didn’t know how to be around me and how to catch up with me and what to talk about and what to say and what to do.

Assistance required

Bill 26:10
So it’s more about them than it was about me. So it’s about maybe I’m not sure, Duncan, if the right word is their lack of frames or references for how to act around people who are unwell. Yeah, it’s very common. Next question. What help do you receive at home for things like showering and toileting?

Duncan 26:45
I currently require considerable assistance for both. Although I tried to be as independent as possible and brush my teeth with an electric toothbrush and partially shave with a Benjamin, similar to hair clippers. My father, who lives in England also had a stroke last year, but he’s currently able to move from his bed to a wheelchair unassisted. So I assume he’s able to transfer from his wheelchair to a toilet seat on a system too I hope to be that mobile one day.

Bill 27:26
Yeah, that’s a good thing to aim for Man. That is an awesome thing to aim for. Your dad had a stroke as well. Same kind of stroke?

Duncan 27:40
Yeah.

Bill 27:45
That’s interesting. All right next question. What is the best thing that has come from your stroke experience?

Duncan 27:57
The best thing is probably having more time to connect with friends. Although COVID-19 has limited that to Instagram, and email, I like sharing with my friends, my mildly entertaining posts and messages.

Bill 28:17
Mildly entertaining, that’s a good description. No I do enjoy our interaction on Instagram. Obviously, when this conversation goes live, what I’m going to do is put all the links to your Instagram so that people can jump on board and connect with you as well.

Bill 28:45
Because we do have, we ask some serious questions on Instagram, and people do interact. And we have really big insightful conversations. And I think they’re a great place for stroke survivors who are listening to come to to get a little bit of extra motivation perhaps or a little bit of extra understanding and feeling a little bit more normal. All right. Next question. How has COVID interfered with your recovery? I know we briefly touched on it in our conversation about that

Duncan 29:28
As I live in a US nursing home under strict quarantine conditions. All external therapy has been unfortunately halted for me until the scare over the virus has subsided. Internal therapy is also on pause, but that is for medical insurance reasons.

Duncan 29:51
In my experience, therapy dramatically diminishes after one year and next month will be my three year stroke anniversary. I’m my own therapist, obviously, I have no training. But I had an idea of good form.

Duncan 30:10
Apart from video communication, I’ve only seen my wife and kids twice since COVID-19 began. And I haven’t left this building since March of last year. I know the pandemic has impacted everyone, but I’ve only been allowed to leave my room about 10 times.

Bill 30:33
So you’ve only been allowed to leave the room 10 times to go outside and experience fresh air?

Duncan 30:43
Inside the building.

Bill 30:47
Yeah. That would be tough. But obviously, it makes sense to try and keep you guys safe. Yes, we want to make sure that we keep you safe. I get it. Thank you for going to all the trouble and being here. I really appreciate it.

Duncan 31:07
Thanks so much for your excellent interview technique. And of course, your time. I really appreciate it. I’ll say

Duncan 31:21
Goodbye

Bill 31:26
You’re welcome. You know what? How did you know I was gonna be an excellent interviewer? You’re so polite man. Hey, goodbye to you enjoy the rest of your day.

Intro 31:51
Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

Intro 32:08
Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 32:18
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 32:30
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

Intro 32:46
Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 32:55
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 33:09
If you are experiencing a health emergency or think you might be call 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

Intro 33:25
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The post 133. Overcoming Locked In Syndrome – Duncan Campling appeared first on Recovery After Stroke.

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Duncan Campling has been in recovery from locked-in syndrome since 2018. The father of two is living in a nursing home and due to Covid has not been outside in 9 months Duncan Campling has been in recovery from locked-in syndrome since 2018. The father of two is living in a nursing home and due to Covid has not been outside in 9 months Recovery After Stroke 33:47
132. How To Manage Setbacks After Stroke – Bill Gasiamis https://recoveryafterstroke.com/how-to-manage-setbacks-after-stroke/ Tue, 09 Feb 2021 08:25:08 +0000 https://recoveryafterstroke.com/?p=5753 https://recoveryafterstroke.com/how-to-manage-setbacks-after-stroke/#respond https://recoveryafterstroke.com/how-to-manage-setbacks-after-stroke/feed/ 0 <p>7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/how-to-manage-setbacks-after-stroke/">132. How To Manage Setbacks After Stroke – Bill Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks

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Highlights:

00:53 Introduction
01:29 Stroke recovery setbacks
04:09 Tip 1. Rest
07:11 Tip 2. Reassess
09:46 Planning ahead
10:27 Tip 3. Change something
15:30 Changing your diet
17:20 Tip 4. Get out of your head
20:33 Tip 5. Ask for help
26:47 Tip 6. Wait it out
30:17 Tip 7. Practice gratitude

Transcription:

Bill 0:00
My week. So for example, if I’ve got somewhere to go on a Saturday night, and then I make sure that I’m not going to go out on Friday night, and I make sure I don’t do anything too massive on Thursday night because if I do go out both those nights that by the time I get to Saturday, I will have overexerted myself in my brain.

Bill 0:19
And if I go out on Saturday, it might be a really terrible Sunday. So I want to avoid doing that. So I try to reassess often about what I need to do to get through my week to get to the event that I want to be at and be feeling the best and feeling great about being there and enjoying myself while I’m there.

Intro 0:40
This is The Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

Introduction

How to manage setbacks after stroke
Bill 0:53
Bill Gasiamis here again for recoveryafterstroke.com This is Episode 132. And today’s episode is a solo episode. Today, I wanted to bring to you my seven tips to navigate setbacks while on the road to recovery after a stroke.

Bill 1:10
So like me, if you’ve probably had setbacks during your stroke recovery and, I believe that you’ll find these tips helpful. It’s taken me three days to get to the point where I can actually record this podcast episode because for the last three days, I’ve had a massive headache.

Stroke recovery setbacks

Bill 1:29
And I haven’t been able to sit in front of the computer properly, especially in front of bright blue computer lights. And that is one of the things that I consider to be a setback. And I think it’s really important to have this discussion because people can take setbacks in a bad way.

Bill 1:49
And I used to, but I want to talk about how I started to change the way that I looked at setbacks and change the way that I went about doing things so that I could recover and overcome them sooner.

Bill 2:02
Because I’m nine years post-stroke, and still the setbacks come that don’t come as dramatic as they used to, but they still come. Now just before we get started, if you have enjoyed the recovery after stroke podcast, I wonder if you would do me a favor and go ahead and give the show a five-star review on the podcast platform that you listen to your favorite shows on.

Bill 2:28
Now, this will make a huge difference to the ranking of the show. And we’ll make it easier for other stroke survivors to find and hopefully, it will help them feel better about their stroke as well.

Bill 2:39
Now if you have a favorite episode of the show, go ahead and share it on your social medias. And like it on YouTube, leave a comment and let me know which episode it was and how it helped you and why it resonated with you.

Bill 2:54
Now also, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own computer.

Bill 3:06
I too am a three-time stroke survivor I’ve built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

Bill 3:16
Support packages give you access to a variety of tools 24-hours a day, seven days a week so that you can also work on other areas of stroke recovery, like adjusting to your new normal, even managing the grief that you may be feeling from your former self.

Bill 3:30
With tailored support available from $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you, you will get the first seven days free as well as a 30-day money-back guarantee no questions asked.

Bill 3:49
As a bonus, you will get to face to face zoom support calls with myself to take your recovery to the next level. So go to recoveryafterstroke.com/support to sign up, it won’t cost you anything for the first seven days. And you will get a full refund if you are not happy after 30 days.

How To Manage Setbacks After Stroke Tip 1. Rest

How to manage setbacks after stroke
Bill 4:09
You have nothing to lose and everything to gain. And now it’s on with the show. All right. So here is tip number one. And this is the only tip that it’s my go-to tip. It’s the one that I do the most. And it’s the one that I’ve been doing the last three days trying to overcome this setback called a headache, a constant headache, and that is rest.

Bill 4:30
And the way I go about resting is to actually do less and to sleep more and try and go to bed a little bit earlier. Now, doing less for me is a really important thing because I’m a high achiever and I can’t normally sit still. So my idea of I’ve got nothing to do today is a to-do list of about 10 or 15 steps.

Bill 4:57
So in order for me to get to do less, I’ve got to really put the to-do list aside and not worry about what has to be done today and do that tomorrow. I mean, there’s nothing urgent that’s on those lists. And as a result of that, I don’t really need to worry about doing any of those things urgently.

Bill 5:22
I can put them off until tomorrow. And what’s most important about that is that I’ve stopped feeling guilty about putting things off and not doing the things that I had in my mind, to do on a particular day, and feeling bad about the fact that I haven’t done it and feeling like I’m not being productive.

Bill 5:44
It’s really okay. If something is urgent like you need to cook, and you’re so tired that you can’t even get up to cook. But because you’re feeling guilty about other things not being done, for example, around the house, you might get to that point where you do all those other things that you feel guilty about. And by the time you get to the end of the day where you need to cook, you haven’t got enough energy to do it.

Bill 6:07
So what I say is, the most important thing to me, for example, is I would prefer to cook a lovely meal at the end of the day. Which means if I have to do nothing all day, to get to the point where I am comfortable to be able to go buy a few ingredients and bring them back and make a nice meal for me and the family, I prefer to do that.

Bill 6:25
So that’s my to do list, it’s definitely different than what it used to be I do a lot less. And I spend as much time on the couch as I need to or I sleep longer and I stay in bed for later, when I wake up in the morning, now I might be awake, and I might not be doing much, and it might feel for some of you like that’s boring.

Bill 6:50
But for me, I just put on a little meditation track and allow myself to stay in bed a little longer, it’s a great way to start the day, it really eases you into starting your day. And it does go about reducing stress, and then also just feeling a little bit better about getting out of bed. And it’s just a tip that works for me.

How To Manage Setbacks After Stroke Tip 2. Reassess

Bill 7:11
So the other thing that I do so tip number two is to reassess to take some time, and reassess the things that are working for me and the things that are not working for me. And what I do is then work out what those things are and do less of what’s not working for me and do more of what is working for me.

Bill 7:33
So in the last three days, what was working for me was spending more time in bed. And having a conversation though with the people that needed to know that I was doing this. So that they wouldn’t think that there was something else wrong, more dramatic, also that they wouldn’t think that I’m just being lazy or feeling down or depressed or something.

Bill 7:56
So first to have a conversation about it and then spend a little more time in bed. That means you wake up a little bit later, you go to bed a little bit earlier. And even in the middle of the day, if you need to do something like go to sleep for a little bit longer, in the middle of the day, then do that as well.

Bill 8:14
So I reassessed that what was going to be important for me to help my headache go away will sleep more, what was going to be less important for me was to spend more time on the computer.

Bill 8:24
So I put off not doing this work for three days. The other thing that’s really important for me during my reassessment process was that I worked out that going out and about and being in places that were full of noise and a lot of overwhelming things that are going to overwhelm my brain is not important.

Bill 8:44
And I made the assessment that it was going to be okay if I did hardly nothing over the last few days over the weekend and yesterday, which was Monday. And one of the habits that I’ve been able to find myself in lately is to reassess before I get to this point and hit a wall for three days.

Bill 9:07
Now, sometimes these fatigue situations or these headaches situations, they just come and I don’t notice that they’re around the corner, and therefore I don’t change my behavior and I don’t reassess. And as a result of that they catch me a little bit unaware. But I found myself to be able to get out of a lot of these long term setbacks by reassessing often and making decisions about what’s going to happen in three days from earlier on.

Planning ahead

Bill 9:46
So I start planning my week so for example, if I’ve got somewhere to go on a Saturday night, and then I make sure that I’m not going to go out on Friday night and I make sure I don’t do anything too massive on Thursday night, because if I do go out both those nights that by the time I get to Saturday, I will have overexerted myself in my brain.

Bill 10:07
And if I go out on Saturday, it might be a really terrible Sunday. So I want to avoid doing that. So I try to reassess often about what I need to do to get through my week to get to the event that I want to be at and be feeling the best and feeling great about being there and enjoying myself while I’m there.

How To Manage Setbacks After Stroke Tip 3. Change something

Bill 10:27
So tip number three is to change something. Henry Ford once said, If you always do what you’ve always done, you’ll always get what you always got. And this was very difficult for me to grasp that concept nine years ago before stroke, I used to have the definition of insanity, which is doing the same thing and expect different results.

Bill 10:51
And it used to make my life really, really difficult. And I didn’t know how to fix the problem, because I just had only one way of attacking a problem or solving a problem. And I didn’t look for other opportunities to solve problems and overcome problems because I had no experience I didn’t know who to turn to or where to go.

Bill 11:16
So it’s really important to get to that point where you realize that if something is not working for you, you need to change something. If you’re constantly getting into the same setback over and over again, he needs to stop doing what you’re doing, and you need to make a change.

Bill 11:38
And one of the main things that I did to make a change was I change the people that I used to hang around the people that were not good for me energetically. So going back to the fatigue that I was feeling. If I was feeling fatigued, and really rundown, and I had a terrible couple of days, the last thing I wanted to do was hang around with those people who I would call the drainers.

Intro 12:00
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I’ll make matters worse?

Intro 12:18
Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

Intro 12:40
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

Bill 13:03
And as a result of that I saved the energy for me rather than other people who weren’t really serving me well by being with me. So I changed the people I hang around with I didn’t make them my enemies and I didn’t make them feel bad about the situation.

Bill 13:21
I just chose the times when I would hang out with those people. And I really made a point to say, Look, I’m not feeling quite well right now. So would it be okay if we just take a pass. And these are generally good people, they just have different needs when you’re around them.

Bill 13:38
And I’m not always up being able to serve the needs of those people. Sometimes I need to serve my own needs. The other thing I would do is change my routine. So sometimes I’m really good in the mornings. And sometimes I’m really good in the evenings.

Bill 13:58
And it’s really hard to tell, but the majority of the time, I’m good in the morning. So I’m recording this podcast episode in the morning. And I’m feeling very productive. And I’ve done a lot today. And I’ll probably be finished doing my work at about one o’clock in the afternoon and that’s it. I’m done for the rest of the day.

Bill 14:17
But last week, I woke up really badly a few times. And as a result of that, I couldn’t get through the morning routine. I couldn’t do the things that I was doing in the morning and I needed to get through lunchtime in the afternoon to start feeling a little bit better.

Bill 14:34
So I’m not sure call it I took a long time to wake up. But it took quite a while for me to get to that point on this particular few days. So I changed my routine around. I did nothing in the morning. I eased into my day and then after dinner when we had some lovely food to eat.

Bill 14:53
I excused myself and I went into my room and I did the work that I needed to do for about two or three hours productively. And then I settled into the end of my day and went to bed.

Bill 15:05
So it was really helpful for me to change my routine and change the type of work that I was doing. And when I was doing it, so that I was getting really good results, or I was being adaptive so that I could get results, where perhaps previously, I would do work and push through those hard hours.

Changing your diet

How to manage setbacks after stroke
Bill 15:30
And the quality of work wouldn’t be that good, and it will take a lot longer, so it’d be a little bit more energy draining. I also changed what I eat. Now, this is a really important one, if you change what you eat, you’ll notice a massive difference. You know, sometimes you eat some foods, and those foods will give you a food coma.

Bill 15:52
Usually the high carb foods. And usually, if I eat foods at the wrong time, or the right wrong kind of food. But I’ve got some really important work to do on a podcast episode, for example, and I’m going to need to sit in front of the computer, if I have a really high carb meal.

Bill 16:11
But the time I get to sit down on my computer and do that work, I’ll be falling asleep during the recording of the podcast episode, and it will make it really difficult for me to focus and concentrate on what I need to do. Now, I would recommend doing a lower carb diet most days when you’re recovering from a brain injury.

Bill 16:33
But that being said, it’s okay from time to time to have carbs, I really still enjoy pasta. And from time to time, very rarely, I do have a bowl of pasta, but I know what’s going to happen after I eat it. So I make sure that I’m going to have it at a time where I don’t have to worry about getting any work done or doing something that’s important.

Bill 16:54
So there’s some of those things that I would change to get me through those times when I’m feeling a setback. Now, I’m talking about my setback of not feeling well for the last few days from a headache, but your setback might be more dramatic. So hopefully you can take some of these tips and change them and evolve them to suit you and apply them in the way that you need them to be applied.

How To Manage Setbacks After Stroke Tip 4. Get out of your head

The second brain in your gut
Bill 17:20
Now, tip number four. One of the things that really helps me to overcome setbacks is to stop having that head conversation with myself about all the things that are going wrong with their setbacks and all the things that they’re stopping me to do and all the problems and dramas that they are causing me.

Bill 17:41
And getting out of my head really helps for me to stop having those cyclical conversations that get you nowhere other than into a crappy loop of feeling annoyed and upset and sorry for yourself. So the first thing that helps me get out of my head is to take a few deep breaths.

Bill 18:02
And it’s well researched. And it’s well reported on that breathing differently can really change your mood and your mindset. And it can help you navigate those moments where you’re feeling overwhelmed by a setback that you’ve had. Breathing deeply helps you to connect to your heart and your heart is where what’s really important lies.

Bill 18:33
It’s where you go to to actually get answers about what’s really important to you. And if you haven’t had the pleasure to connect with your heart recently, I ask you simply to just put your hand on your heart. Take a few deep breaths.

Bill 19:01
And as you breathe, just connect to your heart and ask your heart. What’s most important to it right now. And perhaps you’re sitting somewhere. And you can do this and contemplate and if you’re not sitting somewhere where you can do this and contemplate right now.

Bill 19:18
If you happen to be listening to this while you’re driving, do not do this right now. But when you get to a place where you can sit comfortably and you can be safe and you can contemplate on what’s important to your heart. Close your eyes. Take those deep breaths, put your hand on your heart and ask your heart what’s important to it right now.

Bill 19:37
And if you sit quietly, you’ll start to notice that something will pop up and it will tell you what the most important thing to you is right now. And if you take action on that and do what your heart desires, you’ll start to feel like this setback is not such a big deal and it will help you reduce stress, and it will help you restore your balance, and it will help you navigate the speed hump or navigate the wave if you’re in the bottom part of a wave, it will help you navigate it.

Bill 20:13
And just be patient so that you can wait for your trajectory to change. So that’s a really important thing. Give yourself the opportunity to connect to your heart and ask it what’s really important to it right now.

How To Manage Setbacks After Stroke Tip 5. Ask for help

My Stroke Recovery Bill Gasiamis
Bill 20:33
Tip number five is ask for help. In my times of setbacks, I really did go out of my way to do this, I did ask for help. And at the height of my challenges with stroke, I connected with a counselor, I connected with multiple coaches, I went out of my way to see other doctors and get second opinions.

Bill 20:59
And most importantly, I didn’t seek help from people that are qualified to help me. So what does that mean? That means that in the past, I used to find myself getting frustrated by going to people that didn’t know how to help me or how to answer my questions.

Bill 21:16
And that would really annoy me, it would really make me feel even worse about my situation. And it felt like my situation was even more hopeless. And the reason being is because I was just going to the wrong person to ask for help, and they don’t know how to help me.

Bill 21:32
For example, if I’m going to somebody who’s never had a stroke and ask them about my stroke, and what I can do to help myself get out of a setback, they’re not going to know how to answer the question. And it’s unfair for me to expect them to have an answer, or make me feel better.

Bill 21:47
And just because we’re out for a tea or a coffee, and we happen to do a catch up, it doesn’t mean that I want to be putting that person in a position where they’re feeling like they don’t know how to support me, or how to help me and they’re feeling sorry for me or finding it difficult for me.

Bill 22:05
What I would rather do is go out with my friends and family and just do friends and family type of stuff. That can be slightly related to stroke, but I’m not about seeking help from them.

Bill 22:18
And you might seek help differently for me, but what I used to do was just ask them for advice on a situation. And it might have been something silly, like, you know, what would you do if you had a headache after your stroke, and they wouldn’t know how to help me they wouldn’t know what to answer, they’ll say go to the hospital, go to the doctor that would get really concerned.

Bill 22:36
And then I would transfer my stress and my anxiety onto that person. And then that interaction wasn’t a really good interaction. So when I was hanging out with mum and dad, and my brother and family and friends, I tried to really minimize my conversations about the stroke, to some very basic answers.

Bill 22:55
And when people asked me, how you coming along, I’d say really good, thank you, or I’ve had a bit of a rough week, but I’m getting better. And I would just generalized so that I wouldn’t get into a conversation that turned into a discussion about how I was needing help, and I was needing help from them, and I was holding out for this help from them, and I wasn’t getting that help.

Bill 23:22
So I outsourced the help that I needed to a coach and a counselor now a coach helped me overcome things that I had never done before and learn how to do things that I’d never done before. For example, if I wanted to go back to the gym and learn how to lift weights with an arm, that wasn’t able to really hold the barbells properly, or the dumbbells properly.

Bill 23:47
I would get a coach to have them help me, guide me through that process. So that I could once again feel comfortable with using my arm. And I wouldn’t be afraid that I was going to drop the weight. I also remember being coached to run again. And I got somebody to stand with a recording device with a phone and record me running so that I could see what it was like when I was running.

Bill 24:14
And then I asked him to run with me or to observe me and tell me what I was doing differently with my foot because my foot wasn’t working properly. And then tell me how to slightly adjust it on my run so that I can get a really good result from running and feel better about running.

Bill 24:35
Not that I ever ran again and did a marathon or anything like that. But just so that I could get across the road if a car was coming in, I needed to get to a safe part of the footpath or the sidewalk as my friends in the United States would say. So I would get a coach and a coach who would guide me through the steps to achieve a certain goal or an outcome that I would see a counselor for things that were around emotional challenges and issues.

Bill 25:03
And they would help me overcome what I was feeling, my anxiety and my feelings of feeling down. And we would have therapy sessions that were based around cognitive behavioral therapy. And we would use techniques, I would be advised of techniques that I could use to help get me for example, as I said before, out of my head and connected to my heart, and decrease the cycle of anxiety, and take it away so that I could get clarity and then approach life in a different way.

Bill 25:38
Because clarity is a hard thing to get when you’re recovering after stroke, because you could be suffering from your neuro fatigue. And you could be suffering from other cognitive issues. So I didn’t want to also be working and making my clarity less clear, I didn’t want to be in the way of clarity, I wanted to try and minimize my negative impact on clarity.

Bill 26:05
So asking for help also came from doctors by getting a second opinion. If I didn’t like what a doctor had to say to me about their approach to my care and my well being, I would get a second opinion. And I would continue getting a second opinion until I found somebody that was going to work with me in the way that I wanted them to work with me.

Bill 26:25
Now, it’s not that I argued with people, it’s that sometimes I didn’t feel comfortable seeking help medical help from certain medical professionals. So I found medical professionals, that I preferred to get medical help from and I continued seeing them rather than the other people.

How To Manage Setbacks After Stroke Tip 6. Wait it out

Bill 26:47
So hopefully, those few little bits of wisdom, I suppose from me regarding asking for help will help you as well. Now, tip number six is wait it out. Now often waiting, just waiting, and doing nothing will bring positive change, because things go in cycles, they’re going in waves.

Bill 27:11
So when you’re at the bottom of the wave, if you just wait it out, you’ll eventually catch the wave, and you’ll get to the top of the wave. And waiting it out, kind of coincides with do less, and also coincides with rest. So it’s a good way to do less than rest. And you can have this conversation with your family and friend, if they’re asking you what’s going on? How are you feeling? or Why aren’t you up and about? or Why aren’t you doing the things that you were supposed to do?

Bill 27:42
You can say look, I’m not feeling well at the moment. And I’m just going to wait it out. And I’m going to get to that point where I’m going to feel better, because the cycle will move from a low part of the cycle to a higher part of the cycle. I’ll ride the wave out. And eventually I’ll be on top of the cycle. And I’ll be able to get those things done.

Bill 28:02
So you have to be patient with me apologize and say, you know, just give me some time. And I’ll be alright, I’ll get there. Now, what’s really important when you’re waiting it out is that you’re remembering the cycle, you’re remembering that recovery is a cycle, it is a wave, and you will get to the bottom of the wave and you will get to the other side of the cycle, you just need to wait it out.

Bill 28:28
And why you need to remember that is because as you’re going into the cycle, you need to prepare for the next one, you need to get yourself to that point where I’m at the top of my game right now I’m feeling the best I’ve felt in a little while. And I’m going to enjoy this time and I’m going to make the most of it.

Bill 28:46
But I’m not going to overdo things and stop paying attention to how my body is responding and what feedback it’s giving me. I’m going to wait to notice when the cycle is starting to dip again from a high to a low. And when I’m starting to find that I’m riding the wave from the crest to the trough again.

Bill 29:08
And then that way I’ll be prepared for the next one and I’ll be able to put more things in place to give people a lot of notice that I’m coming to that point where I’m going to be experiencing perhaps some low days or some down days and that they should be aware of that and then it’s okay that I’ll be there. But if they know about it, then they can also be comfortable with me being there and not be too concerned.

Bill 29:36
And especially that was a good one for family and friends especially partners that are in the home around you or with you all the time and children as well because children will get negatively affected by mum or dad’s mood and energy levels. So it’d be really good if we could educate them at that time.

Bill 29:59
And then what that does That brings everyone into an awareness and an understanding. And then that reduces stress and anxiety. And it helps people to just feel better about some of the low times that are coming. And it’s a good lesson in life anyway, for those children and for other people in your family.

How To Manage Setbacks After Stroke Tip 7. Practice gratitude


Bill 30:17
Tip number seven, and one of my favorite tips is to practice gratitude. Practicing gratitude is such an easy thing to do, and it gives back so much. So when I’m getting to that point where I’m in a setback or experiencing a setback, or trying to get out of a setback, I just practice gratitude.

Bill 30:42
And I’ll take note of the things that I am grateful for, at the beginning of the day, three things that I’m grateful for, I might do it while I’m in bed, sometimes without a notepad without actually writing it down.

Bill 30:57
So as I wake up in the morning, it helps me to just feel grateful and have this different kind of vibe when I’m getting out of bed. And also, at the end of the day, I am practicing gratitude, because again, it helps me to take this really cool and children really comfortable and happy vibe to bed.

Bill 31:16
And I think it sets me up for sleeping well at night. So, practice gratitude, write three things down at the beginning of the day, and three things down at the end of the day. And do it for as many days in a row as you can. Now, technically, you can do it for 365 days a year, because it’s not a big thing to ask, or it’s not a big thing to do in your head, it’s a very easy thing to do so.

Bill 31:43
But if you get bored of it, I’m going to do this, I’m going to set you a little challenge and do it for at least seven days straight. And at the end of those seven days, read your list. Make a note of all the things that you’ve written there, at least six things every day, for seven days.

Bill 32:03
And then you’ll be amazed at what it is that you’ve noticed, and that you’re paying attention to now that you weren’t paying attention to at the beginning of the seven day challenge. And that’s a really easy challenge. If you do it, you won’t get any reward from me, but you will get a reward from yourself, if you don’t do it there’s no such thing as failing this challenge, do it once and you’re a winner to twice and you’re a winner, it makes no difference.

Bill 32:31
So if you start it and stop it, don’t feel bad about it. Just get back to it when you can, it’s really, really important. Now, if you do complete the seven days, and you really appreciated the or you’re grateful for the experience of going through practicing gratitude, then just give yourself another seven day challenge and start again from the beginning.

Bill 32:56
And just keep adding to that list. And it’s okay if you add the same things on multiple days, it’s really perfectly fine. But you’ll find that you’re adding a lot of different things that you’re not grateful for.

Bill 33:09
So to wrap up this episode, one of the things that I’m grateful for at least one of those things that I’m grateful today is that I can actually sit here and do this podcast episode, it’s taking me three days to get to this point. But now that I’m here, I’m really pleased to be able to get back to this space where I can concentrate, give you my undivided attention for more than half an hour.

Bill 33:35
And hopefully give you some tips that are going to make your setbacks a little smoother, and less concerning and worrying. Now, if you’re having a setback that’s related to your health and well being and you think that it’s got something to do with your stroke or your condition, do not hesitate to go back and see your doctor.

Bill 33:56
And absolutely straightaway tell them that you are worried if your setback is serious enough, and if you’re concerned enough, and if you’re worried enough, go and see a doctor do not hesitate. And this guide or these seven steps or seven little tips to how to navigate through setbacks is for those general setbacks, those life setbacks that stroke interferes with that makes us feel a little bit down and makes us feel a little bit concerned about how our recovery is going and how long it’s going to take.

Bill 34:36
So just to wrap up, let me say this. So just to wrap up, let’s do a quick recap. So tip number one is rest. Do less sleep more. Tip number two was reassess. Reassess what’s working, do more of that and what’s not working and do less of that.

Bill 35:01
Tip number three was changed something, changed the people you hang around with or the type of work that you do or what you eat and when you eat it. Tip number four, get out of your head. Take a deep breath connect to your heart.

Bill 35:16
Tip number five was ask for help see a counselor or a coach, get a second opinion. And don’t necessarily hang out with people and then make them feel like you need them to answer all your questions, especially when they’re not qualified to do so.

Bill 35:36
Tip number six is waited out, wait for the cycle to end. And then tip number seven was practice gratitude. Now. I really hope that you enjoyed this podcast episode if you did, I would really appreciate it if you give it a thumbs up on YouTube if that’s where you’re watching.

Bill 35:54
If you give it a five star review on your favorite podcast app, if you would like to share it, please do share it with somebody on your social media. And if there’s anything that I can do for you just reach out, you can send me an email at bill@recoveryafterstroke.com I enter all my emails personally. And thanks for being a frequent listener to my podcast. I really hope that this episode is going to help you in your recovery after stroke.

Intro 36:31
Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

Intro 36:58
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

Intro 37:14
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances or health objectives did not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 37:35
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 37:49
If you are experiencing a health emergency or think you might be called 000 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information and our content we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

Intro 38:12
If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post 132. How To Manage Setbacks After Stroke – Bill Gasiamis appeared first on Recovery After Stroke.

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7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks 7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks Recovery After Stroke 38:26
131. Losing Your Independence After Stroke – Ruth Carroll https://recoveryafterstroke.com/losing-your-independence-after-stroke-ruth-carroll/ Mon, 01 Feb 2021 11:30:00 +0000 https://recoveryafterstroke.com/?p=5726 <p>Ruth Carroll gave birth to her son on March 31 2017 and the very next day experienced an ischemic stroke which was a result of complications from a brain tumor.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/losing-your-independence-after-stroke-ruth-carroll/">131. Losing Your Independence After Stroke – Ruth Carroll</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Ruth Carroll gave birth to her son on March 31 2017 and the very next day experienced an ischemic stroke which was a result of complications from a brain tumor. Ruth Carroll gave birth to her son on March 31 2017 and the very next day experienced an ischemic stroke which was a result of complications from a brain tumor. Recovery After Stroke 1:06:51 130. Cryptogenic Stroke – Andy Dobinson https://recoveryafterstroke.com/cryptogenic-stroke-andy-dobinson/ Tue, 26 Jan 2021 05:25:45 +0000 https://recoveryafterstroke.com/?p=5712 <p>Andy Dobinson is an ultra marathon runner and an endurance bicycle rider who experienced a cryptogenic stroke</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/cryptogenic-stroke-andy-dobinson/">130. Cryptogenic Stroke – Andy Dobinson</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Andy Dobinson is an ultra marathon runner and an endurance bicycle rider who experienced a cryptogenic stroke Andy Dobinson is an ultra marathon runner and an endurance bicycle rider who experienced a cryptogenic stroke Recovery After Stroke 1:06:39 129. Changing Perspective After Stroke – Jennifer Chapman https://recoveryafterstroke.com/changing-perspective-after-stroke-jennifer-chapman/ Tue, 12 Jan 2021 01:07:37 +0000 https://recoveryafterstroke.com/?p=5673 <p>Have you ever noticed how your Perspective After Stroke has now changed and what is important, is not what it used to be.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/changing-perspective-after-stroke-jennifer-chapman/">129. Changing Perspective After Stroke – Jennifer Chapman</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Have you ever noticed how your Perspective After Stroke has now changed and what is important, is not what it used to be. Have you ever noticed how your Perspective After Stroke has now changed and what is important, is not what it used to be. Recovery After Stroke 1:10:38 128. Exercise After Stroke – Lilia Artimenia https://recoveryafterstroke.com/exercise-after-stroke/ Mon, 04 Jan 2021 11:49:00 +0000 https://recoveryafterstroke.com/?p=5659 <p>Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/exercise-after-stroke/">128. Exercise After Stroke – Lilia Artimenia</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page Recovery After Stroke 49:08 127. Living With Aphasia After Stroke – Jack Breitenstein https://recoveryafterstroke.com/living-with-aphasia-after-stroke-jack-breitenstein/ Mon, 28 Dec 2020 14:07:17 +0000 https://recoveryafterstroke.com/?p=5644 <p>Jack Breitenstein is recovering from a ruptured avm, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/living-with-aphasia-after-stroke-jack-breitenstein/">127. Living With Aphasia After Stroke – Jack Breitenstein</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Jack Breitenstein is recovering from a ruptured avm, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke. Jack Breitenstein is recovering from a ruptured avm, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke. Recovery After Stroke 46:53 126. Diabetes and Progressive stroke – Joe Cassaniti https://recoveryafterstroke.com/diabetes-and-progressive-stroke/ Tue, 15 Dec 2020 15:06:34 +0000 https://recoveryafterstroke.com/?p=5616 <p>Joe Cassanitit sometimes didn't take his diabetes diagnosis seriously. The decision to stop taking his medication resulted in a brain stem, progressive pons stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/diabetes-and-progressive-stroke/">126. Diabetes and Progressive stroke – Joe Cassaniti</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Joe Cassanitit sometimes didn't take his diabetes diagnosis seriously. The decision to stop taking his medication resulted in a brain stem, progressive pons stroke. Joe Cassanitit sometimes didn't take his diabetes diagnosis seriously. The decision to stop taking his medication resulted in a brain stem, progressive pons stroke. Recovery After Stroke 1:05:56 125. How Emotional Intelligence Helps With Stroke Recovery – Usha Raman https://recoveryafterstroke.com/how-emotional-intelligence-helps-with-stroke-recovery/ Mon, 07 Dec 2020 12:41:00 +0000 https://recoveryafterstroke.com/?p=5602 <p>Emotional Intelligence can help you get unstuck, remove emotional baggage, gain more confidence, and live mindfully and happily after a stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/how-emotional-intelligence-helps-with-stroke-recovery/">125. How Emotional Intelligence Helps With Stroke Recovery – Usha Raman</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Emotional Intelligence can help you get unstuck, remove emotional baggage, gain more confidence, and live mindfully and happily after a stroke. Emotional Intelligence can help you get unstuck, remove emotional baggage, gain more confidence, and live mindfully and happily after a stroke. Recovery After Stroke 1:00:57 124. Vertebral Artery Dissection And Stroke Aftermath – Stephanie Flynn https://recoveryafterstroke.com/the-aftermath-of-a-vertebral-artery-dissection-and-stroke/ Mon, 30 Nov 2020 15:35:44 +0000 https://recoveryafterstroke.com/?p=5581 <p>Stephanie Flynn remembers the exact moment when a sudden movement caused a vertebral artery dissection that created a clot which caused a stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-aftermath-of-a-vertebral-artery-dissection-and-stroke/">124. Vertebral Artery Dissection And Stroke Aftermath – Stephanie Flynn</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Stephanie Flynn remembers the exact moment when a sudden movement caused a vertebral artery dissection that created a clot which caused a stroke. Stephanie Flynn remembers the exact moment when a sudden movement caused a vertebral artery dissection that created a clot which caused a stroke. Recovery After Stroke 1:28:02 123. Muscular Dystrophy And Stroke – Courtney Gabrus https://recoveryafterstroke.com/muscular-dystrophy-and-stroke/ Tue, 24 Nov 2020 02:01:04 +0000 https://recoveryafterstroke.com/?p=5560 <p>Muscular dystrophy is a degenerative condition that increases the risk of ischemic stroke. Courtney Gabrus was living with muscular dystrophy when at age 22 she also experienced an ischemic stroke</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/muscular-dystrophy-and-stroke/">123. Muscular Dystrophy And Stroke – Courtney Gabrus</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Muscular dystrophy is a degenerative condition that increases the risk of ischemic stroke. Courtney Gabrus was living with muscular dystrophy when at age 22 she also experienced an ischemic stroke Muscular dystrophy is a degenerative condition that increases the risk of ischemic stroke. Courtney Gabrus was living with muscular dystrophy when at age 22 she also experienced an ischemic stroke Recovery After Stroke 1:07:10 122. The Brain Injury Solicitor – Laura Barlow https://recoveryafterstroke.com/the-brain-injury-solicitor/ Mon, 16 Nov 2020 14:45:40 +0000 https://recoveryafterstroke.com/?p=5542 <p>When a brain injury is caused by negligence you may need the help of a brain injury solicitor.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-brain-injury-solicitor/">122. The Brain Injury Solicitor – Laura Barlow</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> When a brain injury is caused by negligence you may need the help of a brain injury solicitor. When a brain injury is caused by negligence you may need the help of a brain injury solicitor. Recovery After Stroke 49:43 121. Finding Purpose After Stroke – Nicholas Kemp https://recoveryafterstroke.com/finding-purpose-after-stroke/ Tue, 10 Nov 2020 01:22:11 +0000 https://recoveryafterstroke.com/?p=5525 <p>Finding purpose after stroke is a key ingredient that helps with the recovery process.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/finding-purpose-after-stroke/">121. Finding Purpose After Stroke – Nicholas Kemp</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Finding purpose after stroke is a key ingredient that helps with the recovery process. Finding purpose after stroke is a key ingredient that helps with the recovery process. Recovery After Stroke 1:14:00 120. Art Therapy For Stroke Recovery – Noreen Walsh https://recoveryafterstroke.com/art-therapy-for-stroke-recovery/ Mon, 02 Nov 2020 12:28:32 +0000 https://recoveryafterstroke.com/?p=5470 <p>Noreen Walsh discovered art therapy, 30 years after experiencing a stroke due to complications from Hemolytic–uremic syndrome (HUS) at 18 months old.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/art-therapy-for-stroke-recovery/">120. Art Therapy For Stroke Recovery – Noreen Walsh</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Noreen Walsh discovered art therapy, 30 years after experiencing a stroke due to complications from Hemolytic–uremic syndrome (HUS) at 18 months old. Noreen Walsh discovered art therapy, 30 years after experiencing a stroke due to complications from Hemolytic–uremic syndrome (HUS) at 18 months old. Recovery After Stroke 1:27:23 119. A Brain Aneurysm That Burst At 40 – Claudia Faulkenberry https://recoveryafterstroke.com/a-brain-aneurysm-that-burst-at-40/ Mon, 26 Oct 2020 12:06:00 +0000 https://recoveryafterstroke.com/?p=5396 <p>Albert Rand Faulkenberry was watching TV when he experienced a hemorrhagic stroke due to a ruptured brain aneurysm and that's about when Claudia Faulkenberry became the caregiver to a stroke survivor.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/a-brain-aneurysm-that-burst-at-40/">119. A Brain Aneurysm That Burst At 40 – Claudia Faulkenberry</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Albert Rand Faulkenberry was watching TV when he experienced a hemorrhagic stroke due to a ruptured brain aneurysm and that's about when Claudia Faulkenberry became the caregiver to a stroke survivor. Albert Rand Faulkenberry was watching TV when he experienced a hemorrhagic stroke due to a ruptured brain aneurysm and that's about when Claudia Faulkenberry became the caregiver to a stroke survivor. Recovery After Stroke 1:11:07 118. A Link Between Contraceptive Pill And Stroke? – Priya Sharma https://recoveryafterstroke.com/a-link-between-contraceptive-pill-and-stroke/ Mon, 19 Oct 2020 14:59:40 +0000 https://recoveryafterstroke.com/?p=5384 <p>Priya Sharma was 24 years old when multiple blood clots caused an Ischemic Stroke. There is some suspicion that the stroke, may have been caused by the contraceptive pill.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/a-link-between-contraceptive-pill-and-stroke/">118. A Link Between Contraceptive Pill And Stroke? – Priya Sharma</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Priya Sharma was 24 years old when multiple blood clots caused an Ischemic Stroke. There is some suspicion that the stroke, may have been caused by the contraceptive pill. Priya Sharma was 24 years old when multiple blood clots caused an Ischemic Stroke. There is some suspicion that the stroke, may have been caused by the contraceptive pill. Recovery After Stroke 1:02:25 117. Brain Stem Pons Stroke – Gloria Morgan https://recoveryafterstroke.com/brain-stem-pons-stroke-gloria-morgan/ Mon, 12 Oct 2020 03:08:00 +0000 https://recoveryafterstroke.com/?p=5352 <p>Gloria Morgan just gave birth to her third child when a brain stem pons stroke threatened to turn what was supposed to be a happy time into a tragedy.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/brain-stem-pons-stroke-gloria-morgan/">117. Brain Stem Pons Stroke – Gloria Morgan</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Gloria Morgan just gave birth to her third child when a brain stem pons stroke threatened to turn what was supposed to be a happy time into a tragedy. Gloria Morgan just gave birth to her third child when a brain stem pons stroke threatened to turn what was supposed to be a happy time into a tragedy. Recovery After Stroke 1:02:15 116. Brainstem Cavernous Angioma – Whitney Spotts https://recoveryafterstroke.com/brainstem-cavernous-angioma/ Mon, 05 Oct 2020 12:29:00 +0000 https://recoveryafterstroke.com/?p=5286 <p>Being a mom to a toddler is challenging enough and when you have to deal with a brainstem cavernous angioma causing a bleed in your brain it becomes even harder.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/brainstem-cavernous-angioma/">116. Brainstem Cavernous Angioma – Whitney Spotts</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Being a mom to a toddler is challenging enough and when you have to deal with a brainstem cavernous angioma causing a bleed in your brain it becomes even harder. Being a mom to a toddler is challenging enough and when you have to deal with a brainstem cavernous angioma causing a bleed in your brain it becomes even harder. Recovery After Stroke 1:05:31 115. Showing Kindness Even If We Disagree https://recoveryafterstroke.com/showing-kindness-even-if-we-disagree/ Mon, 28 Sep 2020 15:50:50 +0000 https://recoveryafterstroke.com/?p=5245 <p>Disagreements in 2020 have been on the rise, especially with the COVID crisis and world events that polarize communities everywhere. How can we be kind and still disagree?</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/showing-kindness-even-if-we-disagree/">115. Showing Kindness Even If We Disagree</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Disagreements in 2020 have been on the rise, especially with the COVID crisis and world events that polarize communities everywhere. How can we be kind and still disagree? Disagreements in 2020 have been on the rise, especially with the COVID crisis and world events that polarize communities everywhere. How can we be kind and still disagree? Recovery After Stroke 1:01:11 114. Vertebral Artery Dissection & recovery – Amy Wells https://recoveryafterstroke.com/vertebral-artery-dissection-recovery/ Mon, 14 Sep 2020 14:28:56 +0000 https://recoveryafterstroke.com/?p=5042 <p>A vertebral artery dissection is not what you’d expect at 35 years young. In this interview Amy Wells talks candidly about her stroke and how life has change for the better in the last 12 months </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/vertebral-artery-dissection-recovery/">114. Vertebral Artery Dissection & recovery – Amy Wells</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> A vertebral artery dissection is not what you’d expect at 35 years young. In this interview Amy Wells talks candidly about her stroke and how life has change for the better in the last 12 months A vertebral artery dissection is not what you’d expect at 35 years young. In this interview Amy Wells talks candidly about her stroke and how life has change for the better in the last 12 months Recovery After Stroke 1:23:12 113. Arteriovenous Malformation Recovery – Paul Fink https://recoveryafterstroke.com/arteriovenous-malformation-recovery/ Mon, 07 Sep 2020 14:16:28 +0000 https://recoveryafterstroke.com/?p=4846 <p>While getting ready to go to work, Paul complained of a shocking head, soon after his speech was gone and the next thing he remembers is being cared for by the paramedics.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/arteriovenous-malformation-recovery/">113. Arteriovenous Malformation Recovery – Paul Fink</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> While getting ready to go to work, Paul complained of a shocking head, soon after his speech was gone and the next thing he remembers is being cared for by the paramedics. While getting ready to go to work, Paul complained of a shocking head, soon after his speech was gone and the next thing he remembers is being cared for by the paramedics. Recovery After Stroke 1:05:09 112. Carotid Artery Dissection Recovery – Emily Hoffman https://recoveryafterstroke.com/carotid-artery-dissection-recovery/ Mon, 31 Aug 2020 15:31:35 +0000 https://recoveryafterstroke.com/?p=4721 <p>Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/carotid-artery-dissection-recovery/">112. Carotid Artery Dissection Recovery – Emily Hoffman</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day. Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day. Recovery After Stroke 1:11:17 111. 8 Of The Best Stroke Recovery Tips – OT Sisters https://recoveryafterstroke.com/8-of-the-best-stroke-recovery-tips/ Tue, 25 Aug 2020 12:50:45 +0000 https://recoveryafterstroke.com/?p=4637 <p>Learn 8 of the best stroke recovery tips as shared by the OT Sisters, Jaimee Perea, and Suzy Burns who between them have more than 20 years of experience helping people recovering from a stroke and other neurological conditions. Socials: https://www.instagram.com/o.t.sisters/ Episode 87. Occupational Therapy and Stroke Lecture – Bill Gasiamis Highlights: 00.53 Introduction 03:13 […]</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/8-of-the-best-stroke-recovery-tips/">111. 8 Of The Best Stroke Recovery Tips – OT Sisters</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Learn 8 of the best stroke recovery tips as shared by the OT Sisters, Jaimee Perea, and Suzy Burns who between them have more than 20 years of experience helping people recovering from a stroke and other neurological conditions. Socials: https://www. Learn 8 of the best stroke recovery tips as shared by the OT Sisters, Jaimee Perea, and Suzy Burns who between them have more than 20 years of experience helping people recovering from a stroke and other neurological conditions. Socials: https://www.instagram.com/o.t.sisters/ Episode 87. Occupational Therapy and Stroke Lecture – Bill Gasiamis Highlights: 00.53 Introduction 03:13 […] Recovery After Stroke 59:36 110. All The Signs Of Stroke – Jason DePetris https://recoveryafterstroke.com/all-the-signs-of-stroke-jason-depetris/ Mon, 17 Aug 2020 11:00:29 +0000 https://recoveryafterstroke.com/?p=4486 <p>The last thing Jason DePetris expected when eating breakfast one morning before running a marathon was that the numbness he was experiencing on his left side was one of the signs of stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/all-the-signs-of-stroke-jason-depetris/">110. All The Signs Of Stroke – Jason DePetris</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> The last thing Jason DePetris expected when eating breakfast one morning before running a marathon was that the numbness he was experiencing on his left side was one of the signs of stroke. The last thing Jason DePetris expected when eating breakfast one morning before running a marathon was that the numbness he was experiencing on his left side was one of the signs of stroke. Recovery After Stroke 1:00:34 109. The Power Of Suffering – David Roland https://recoveryafterstroke.com/the-power-of-suffering/ Mon, 10 Aug 2020 11:00:12 +0000 https://recoveryafterstroke.com/?p=4446 <p>David Roland is the Author of The Power Of Suffering, a book written after he experienced a Stroke that lead to his career as a Psychologist coming to an end due to stroke and the effects of previously undiagnosed PTSD </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-power-of-suffering/">109. The Power Of Suffering – David Roland</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> David Roland is the Author of The Power Of Suffering, a book written after he experienced a Stroke that lead to his career as a Psychologist coming to an end due to stroke and the effects of previously undiagnosed PTSD David Roland is the Author of The Power Of Suffering, a book written after he experienced a Stroke that lead to his career as a Psychologist coming to an end due to stroke and the effects of previously undiagnosed PTSD Recovery After Stroke 1:09:02 108. Rewiring The Brain – Michael Merzenich https://recoveryafterstroke.com/rewiring-the-brain-michael-merzenich/ Sun, 02 Aug 2020 00:12:00 +0000 http://thetransitloungepodcast.com/?p=426 <p>Neuroplasticity and rewiring your brain. Stroke Podcast Episode 27 – If you have had a similar experience with stroke as I, Rewiring the brain may be just as important to you as it to me. After I experience 3 brain bleeds between 2012 and 2014.  I have left no stone unturned while on the search to […]</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/rewiring-the-brain-michael-merzenich/">108. Rewiring The Brain – Michael Merzenich</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Neuroplasticity and rewiring your brain. Stroke Podcast Episode 27 – If you have had a similar experience with stroke as I, Rewiring the brain may be just as important to you as it to me. After I experience 3 brain bleeds between 2012 and 2014. Neuroplasticity and rewiring your brain. Stroke Podcast Episode 27 – If you have had a similar experience with stroke as I, Rewiring the brain may be just as important to you as it to me. After I experience 3 brain bleeds between 2012 and 2014.  I have left no stone unturned while on the search to […] Recovery After Stroke 55:00 107. Better After Stroke – Sheri McIntyre https://recoveryafterstroke.com/107-better-after-stroke-sheri-mcintyre/ Mon, 20 Jul 2020 15:21:23 +0000 https://recoveryafterstroke.com/?p=4392 <p>Sheri McIntyre believes that she is better after stroke. Sheri feels this way even though the bleed in the brain due to an AVM (arteriovenous malformation) that ruptured when she was in her early 50’s has caused deficits including vision issues, balance issues, and speech issues.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/107-better-after-stroke-sheri-mcintyre/">107. Better After Stroke – Sheri McIntyre</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Sheri McIntyre believes that she is better after stroke. Sheri feels this way even though the bleed in the brain due to an AVM (arteriovenous malformation) that ruptured when she was in her early 50’s has caused deficits including vision issues, Sheri McIntyre believes that she is better after stroke. Sheri feels this way even though the bleed in the brain due to an AVM (arteriovenous malformation) that ruptured when she was in her early 50’s has caused deficits including vision issues, balance issues, and speech issues. Recovery After Stroke 1:09:21 106. Weight Training After Stroke – Kelly Studebaker https://recoveryafterstroke.com/weight-training-after-stroke/ Mon, 13 Jul 2020 13:20:48 +0000 https://recoveryafterstroke.com/?p=4368 <p>Kelly Studebaker has been recovering from the challenges of a ruptured AVM from the tender age of 11. In the years that followed she has overcome many of stroke life's challenges and achieved so much.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/weight-training-after-stroke/">106. Weight Training After Stroke – Kelly Studebaker</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Kelly Studebaker has been recovering from the challenges of a ruptured AVM from the tender age of 11. In the years that followed she has overcome many of stroke life's challenges and achieved so much. Kelly Studebaker has been recovering from the challenges of a ruptured AVM from the tender age of 11. In the years that followed she has overcome many of stroke life's challenges and achieved so much. Recovery After Stroke 55:17 105. Stroke the greatest thing that happened to me https://recoveryafterstroke.com/stroke-the-greatest-thing-that-happened-to-me/ Mon, 06 Jul 2020 16:20:51 +0000 https://recoveryafterstroke.com/?p=4348 <p>Lianne Karla Bigornia was a registered nurse who then became a call center agent and was working from 9 pm to 4 am. Living an unhealthy lifestyle lead her to have a stroke due to high blood pressure and AVM.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-the-greatest-thing-that-happened-to-me/">105. Stroke the greatest thing that happened to me</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Lianne Karla Bigornia was a registered nurse who then became a call center agent and was working from 9 pm to 4 am. Living an unhealthy lifestyle lead her to have a stroke due to high blood pressure and AVM. Lianne Karla Bigornia was a registered nurse who then became a call center agent and was working from 9 pm to 4 am. Living an unhealthy lifestyle lead her to have a stroke due to high blood pressure and AVM. Recovery After Stroke 1:05:23 104. A New Approach to Occupational Therapy After Stroke https://recoveryafterstroke.com/occupational-therapy-after-stroke/ Mon, 29 Jun 2020 15:32:30 +0000 https://recoveryafterstroke.com/?p=4297 <p>JJ Flentke is the owner of a physical therapy and Wellness Center called Boomerang therapy works designed for aging patients and people with neuromuscular disorders.  JJ is a physical therapist with a Master's degree in public health, health administration, and a doctorate in physical therapy, with an emphasis on the aging process.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/occupational-therapy-after-stroke/">104. A New Approach to Occupational Therapy After Stroke</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> JJ Flentke is the owner of a physical therapy and Wellness Center called Boomerang therapy works designed for aging patients and people with neuromuscular disorders.  JJ is a physical therapist with a Master's degree in public health, JJ Flentke is the owner of a physical therapy and Wellness Center called Boomerang therapy works designed for aging patients and people with neuromuscular disorders.  JJ is a physical therapist with a Master's degree in public health, health administration, and a doctorate in physical therapy, with an emphasis on the aging process. Recovery After Stroke 37:21 103. The Fully Recovered Mindset – Maddi Neibanck https://recoveryafterstroke.com/the-fully-recovered-mindset/ Mon, 22 Jun 2020 15:14:42 +0000 https://recoveryafterstroke.com/?p=4268 <p>When migraine headaches led to a brain scan, the last thing Maddi expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-fully-recovered-mindset/">103. The Fully Recovered Mindset – Maddi Neibanck</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> When migraine headaches led to a brain scan, the last thing Maddi expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever. When migraine headaches led to a brain scan, the last thing Maddi expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever. Recovery After Stroke 48:10 102. 10 Years of Stroke Recovery – Stephanie Ho https://recoveryafterstroke.com/10-years-of-stroke-recovery/ Mon, 15 Jun 2020 12:57:10 +0000 https://recoveryafterstroke.com/?p=4249 <p>After experiencing a ruptured AVM in her early 20’s Stephanie Ho has now been on the stroke recovery journey for more than 10 years. In that time she has had to overcome a lot of obstacles including readjusting with her new self and dealing with lost friendships and discovering new ways to be herself.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/10-years-of-stroke-recovery/">102. 10 Years of Stroke Recovery – Stephanie Ho</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> After experiencing a ruptured AVM in her early 20’s Stephanie Ho has now been on the stroke recovery journey for more than 10 years. In that time she has had to overcome a lot of obstacles including readjusting with her new self and dealing with lost f... After experiencing a ruptured AVM in her early 20’s Stephanie Ho has now been on the stroke recovery journey for more than 10 years. In that time she has had to overcome a lot of obstacles including readjusting with her new self and dealing with lost friendships and discovering new ways to be herself. Recovery After Stroke 1:13:59 101. Beyond Trauma – Deborah Stathis https://recoveryafterstroke.com/beyond-trauma-deborah-stathis/ Tue, 09 Jun 2020 13:51:49 +0000 https://recoveryafterstroke.com/?p=4216 <p>Deborah is the author of the book Beyond Trauma and although she is not a stroke survivor she knows a thing or two about recovering from a brain injury. Her message is definitely going to resonate with stroke survivors.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/beyond-trauma-deborah-stathis/">101. Beyond Trauma – Deborah Stathis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Deborah is the author of the book Beyond Trauma and although she is not a stroke survivor she knows a thing or two about recovering from a brain injury. Her message is definitely going to resonate with stroke survivors. Deborah is the author of the book Beyond Trauma and although she is not a stroke survivor she knows a thing or two about recovering from a brain injury. Her message is definitely going to resonate with stroke survivors. Recovery After Stroke 56:42 100. What It’s Like Living With A Stroke Survivor – Christine Gasiamis https://recoveryafterstroke.com/living-with-a-stroke-survivor/ Tue, 02 Jun 2020 03:50:19 +0000 https://recoveryafterstroke.com/?p=4128 <p>In episode 100 Bill is joined by his wife Christine Gasiamis who shares what it was like for her to go through stroke as a wife and mum and then to live through Bill's recovery and experience all the ups and down that stroke survivors go through.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/living-with-a-stroke-survivor/">100. What It’s Like Living With A Stroke Survivor – Christine Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In episode 100 Bill is joined by his wife Christine Gasiamis who shares what it was like for her to go through stroke as a wife and mum and then to live through Bill's recovery and experience all the ups and down that stroke survivors go through. In episode 100 Bill is joined by his wife Christine Gasiamis who shares what it was like for her to go through stroke as a wife and mum and then to live through Bill's recovery and experience all the ups and down that stroke survivors go through. Recovery After Stroke 1:39:31 99. Ischemic Stroke Recovery At 32 – Kelli Geuting https://recoveryafterstroke.com/ischemic-stroke-recovery-at-32/ Mon, 25 May 2020 15:16:56 +0000 https://recoveryafterstroke.com/?p=4081 <p>Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 to the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/ischemic-stroke-recovery-at-32/">99. Ischemic Stroke Recovery At 32 – Kelli Geuting</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 to the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along. Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 to the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along. Recovery After Stroke 1:19:55 98. High Blood Pressure Caused a Stroke – Joe Borges https://recoveryafterstroke.com/blood-pressure-caused-a-stroke/ Mon, 18 May 2020 12:31:50 +0000 https://recoveryafterstroke.com/?p=4034 <p>In August 4, 2016 Joe Borges. experienced a hemorrhagic stroke caused by undiagnosed high blood pressure. He ignored the signs prior to that thinking he was just having migraines.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/blood-pressure-caused-a-stroke/">98. High Blood Pressure Caused a Stroke – Joe Borges</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In August 4, 2016 Joe Borges. experienced a hemorrhagic stroke caused by undiagnosed high blood pressure. He ignored the signs prior to that thinking he was just having migraines. In August 4, 2016 Joe Borges. experienced a hemorrhagic stroke caused by undiagnosed high blood pressure. He ignored the signs prior to that thinking he was just having migraines. Recovery After Stroke 1:18:12 97. Cavernoma – Ginger Burden https://recoveryafterstroke.com/cavernoma-ginger-burden/ Mon, 11 May 2020 15:25:23 +0000 https://recoveryafterstroke.com/?p=3994 <p>Ginger Burden had a cavernous malformation in her brainstem three years ago that caused her to have double vision in her right eye that eventually required surgery about a year and a half later.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/cavernoma-ginger-burden/">97. Cavernoma – Ginger Burden</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Ginger Burden had a cavernous malformation in her brainstem three years ago that caused her to have double vision in her right eye that eventually required surgery about a year and a half later. Ginger Burden had a cavernous malformation in her brainstem three years ago that caused her to have double vision in her right eye that eventually required surgery about a year and a half later. Recovery After Stroke 1:02:34 96. AVM Recovery – Jessica Lepper https://recoveryafterstroke.com/avm-recovery/ Tue, 28 Apr 2020 12:00:00 +0000 https://recoveryafterstroke.com/?p=3880 <p>Jessica was a 20-year-old nurse on shift in a hospital when she noticed herself not being able to speak due to a ruptured AVM. Since then Jessica has had to overcome a lot to get back to work and is now being monitored due to seizures.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/avm-recovery/">96. AVM Recovery – Jessica Lepper</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Jessica was a 20-year-old nurse on shift in a hospital when she noticed herself not being able to speak due to a ruptured AVM. Since then Jessica has had to overcome a lot to get back to work and is now being monitored due to seizures. Jessica was a 20-year-old nurse on shift in a hospital when she noticed herself not being able to speak due to a ruptured AVM. Since then Jessica has had to overcome a lot to get back to work and is now being monitored due to seizures. Recovery After Stroke 31:30 95. Time To Talk About Stroke – Derek Van Oss https://recoveryafterstroke.com/derek-van-oss/ Mon, 20 Apr 2020 12:00:00 +0000 https://recoveryafterstroke.com/?p=3694 <p>Derek Van Oss suffered from AVM (Arteriovenous malformation) back in 2002. Since then he has struggled with so many challenges but now 18 years down the track, Derek was able to get back on his feet and turn his life around.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/derek-van-oss/">95. Time To Talk About Stroke – Derek Van Oss</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Derek Van Oss suffered from AVM (Arteriovenous malformation) back in 2002. Since then he has struggled with so many challenges but now 18 years down the track, Derek was able to get back on his feet and turn his life around. Derek Van Oss suffered from AVM (Arteriovenous malformation) back in 2002. Since then he has struggled with so many challenges but now 18 years down the track, Derek was able to get back on his feet and turn his life around. Recovery After Stroke 1:43:45 94. How To Reignite Your Passion – Brigette Sigley https://recoveryafterstroke.com/brigette-sigley-how-to-reignite-your-passion/ Mon, 13 Apr 2020 10:00:00 +0000 https://recoveryafterstroke.com/?p=3670 <p>Brigette Sigley was juggling a successful business and family, and being busy led to her missing the warning signs that eventually led to a brain tumour then breast cancer.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/brigette-sigley-how-to-reignite-your-passion/">94. How To Reignite Your Passion – Brigette Sigley</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Brigette Sigley was juggling a successful business and family, and being busy led to her missing the warning signs that eventually led to a brain tumour then breast cancer. Brigette Sigley was juggling a successful business and family, and being busy led to her missing the warning signs that eventually led to a brain tumour then breast cancer. Recovery After Stroke 59:43 93. Caring For A Stroke Survivor – Jim Lanahan https://recoveryafterstroke.com/caring-for-a-stroke-survivor/ Tue, 07 Apr 2020 12:00:58 +0000 https://recoveryafterstroke.com/?p=3640 <p>Jim's mom had an ischemic stroke three years ago. Stroke not only impacted his mom's life but Jim's life also. As her carer Jim had to give up a lot, make sacrifices in his own personal life. </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/caring-for-a-stroke-survivor/">93. Caring For A Stroke Survivor – Jim Lanahan</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Jim's mom had an ischemic stroke three years ago. Stroke not only impacted his mom's life but Jim's life also. As her carer Jim had to give up a lot, make sacrifices in his own personal life. Jim's mom had an ischemic stroke three years ago. Stroke not only impacted his mom's life but Jim's life also. As her carer Jim had to give up a lot, make sacrifices in his own personal life. Recovery After Stroke 56:15 92. Hemorrhagic Stroke Recovery – Clare Coffield https://recoveryafterstroke.com/hemorrhagic-stroke-recovery/ Mon, 30 Mar 2020 16:12:21 +0000 https://recoveryafterstroke.com/?p=3626 <p>Clare Coffield had a Hemorrhagic stroke back in 2015, and while she was in recovery, she suffered a massive set back due to a leg injury. Now 5 years later, having faced so many challenges and adversities, Clare has come a long way in her recovery journey.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/hemorrhagic-stroke-recovery/">92. Hemorrhagic Stroke Recovery – Clare Coffield</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Clare Coffield had a Hemorrhagic stroke back in 2015, and while she was in recovery, she suffered a massive set back due to a leg injury. Now 5 years later, having faced so many challenges and adversities, Clare has come a long way in her recovery jour... Clare Coffield had a Hemorrhagic stroke back in 2015, and while she was in recovery, she suffered a massive set back due to a leg injury. Now 5 years later, having faced so many challenges and adversities, Clare has come a long way in her recovery journey. Recovery After Stroke 56:19 91. Navigating Uncertain Times – Dr. Jim Karagiannis https://recoveryafterstroke.com/navigating-uncertain-times-dr-jim-karagiannis/ Mon, 23 Mar 2020 12:00:50 +0000 https://recoveryafterstroke.com/?p=3452 <p>In my conversation with Dr Jim Karagiannis, we are reminded that navigating uncertain times is something that stroke survivors have done before. If you are a stroke survivor and find yourself feeling uncertain about what the future holds because of corona virus you will get alot from this episode.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/navigating-uncertain-times-dr-jim-karagiannis/">91. Navigating Uncertain Times – Dr. Jim Karagiannis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In my conversation with Dr Jim Karagiannis, we are reminded that navigating uncertain times is something that stroke survivors have done before. If you are a stroke survivor and find yourself feeling uncertain about what the future holds because of cor... In my conversation with Dr Jim Karagiannis, we are reminded that navigating uncertain times is something that stroke survivors have done before. If you are a stroke survivor and find yourself feeling uncertain about what the future holds because of corona virus you will get alot from this episode. Recovery After Stroke 36:38 90. Stroke Fatigue and Thyroid – Dr. Elena Zinkov https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/ Mon, 09 Mar 2020 12:00:52 +0000 https://recoveryafterstroke.com/?p=3429 <p>Dr Elena Zinkov is a functional medicine doctor who is an expert in hormones. In this episode of the RecoveryAfterStroke podcast we discuss the link between the brain, the thyroid gland and neurological fatigue as well as what you should know to help recover from fatigue after stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/">90. Stroke Fatigue and Thyroid – Dr. Elena Zinkov</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Dr Elena Zinkov is a functional medicine doctor who is an expert in hormones. In this episode of the RecoveryAfterStroke podcast we discuss the link between the brain, the thyroid gland and neurological fatigue as well as what you should know to help r... Dr Elena Zinkov is a functional medicine doctor who is an expert in hormones. In this episode of the RecoveryAfterStroke podcast we discuss the link between the brain, the thyroid gland and neurological fatigue as well as what you should know to help recover from fatigue after stroke. Recovery After Stroke 1:05:07 89. Teenage Stroke and Recovery – Eric Hinwood https://recoveryafterstroke.com/teenage-stroke-and-recovery/ Mon, 02 Mar 2020 12:00:49 +0000 https://recoveryafterstroke.com/?p=3399 <p>These days Eric Hinwood is an actor, director, producer, editor, model, & filmmaker but not that long ago he was a teenage stroke survivor.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/teenage-stroke-and-recovery/">89. Teenage Stroke and Recovery – Eric Hinwood</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> These days Eric Hinwood is an actor, director, producer, editor, model, & filmmaker but not that long ago he was a teenage stroke survivor. These days Eric Hinwood is an actor, director, producer, editor, model, & filmmaker but not that long ago he was a teenage stroke survivor. Recovery After Stroke 1:11:45 88. Healing The Brain After Stroke – David Norris https://recoveryafterstroke.com/healing-the-brain-after-stroke/ Mon, 24 Feb 2020 15:05:03 +0000 https://recoveryafterstroke.com/?p=3383 <p>In this episode Bill Gasiamis talk with Occupational Therapist David Norris about the steps he took to heal his brain after 3 brain bleeds and brain surgery. </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/healing-the-brain-after-stroke/">88. Healing The Brain After Stroke – David Norris</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In this episode Bill Gasiamis talk with Occupational Therapist David Norris about the steps he took to heal his brain after 3 brain bleeds and brain surgery. In this episode Bill Gasiamis talk with Occupational Therapist David Norris about the steps he took to heal his brain after 3 brain bleeds and brain surgery. Recovery After Stroke 1:03:53 87. Occupational Therapy and Stroke Lecture – Bill Gasiamis https://recoveryafterstroke.com/occupational-therapy-and-stroke/ Mon, 17 Feb 2020 12:00:59 +0000 https://recoveryafterstroke.com/?p=3362 <p>Since 2013 Bill Gasiamis has been sharing about the early stages of his stroke journey to the third year occupational therapy students at Australian Catholic University. The students were learning about assessment for stroke patients.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/occupational-therapy-and-stroke/">87. Occupational Therapy and Stroke Lecture – Bill Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Since 2013 Bill Gasiamis has been sharing about the early stages of his stroke journey to the third year occupational therapy students at Australian Catholic University. The students were learning about assessment for stroke patients. Since 2013 Bill Gasiamis has been sharing about the early stages of his stroke journey to the third year occupational therapy students at Australian Catholic University. The students were learning about assessment for stroke patients. Recovery After Stroke 40:39 86. What Is Neuroplasticity – David Norris https://recoveryafterstroke.com/what-is-neuroplasticity/ Mon, 03 Feb 2020 12:00:38 +0000 https://recoveryafterstroke.com/?p=3312 <p>David Norris is an Occupational therapist from Brisbane, Australia who specializes in the brain's neuroplasticity to help people recover better from a brain injury. </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/what-is-neuroplasticity/">86. What Is Neuroplasticity – David Norris</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> David Norris is an Occupational therapist from Brisbane, Australia who specializes in the brain's neuroplasticity to help people recover better from a brain injury. David Norris is an Occupational therapist from Brisbane, Australia who specializes in the brain's neuroplasticity to help people recover better from a brain injury. Recovery After Stroke 55:38 85. Carotid Artery Dissection – Marcia Moran https://recoveryafterstroke.com/carotid-artery-dissection/ Mon, 27 Jan 2020 12:00:11 +0000 https://recoveryafterstroke.com/?p=3294 <p>Marcia Moran woke one morning after having experienced a stroke in her sleep due to a carotid artery dissection. Marcia had to drag herself on the floor with one hand to raise the alarm.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/carotid-artery-dissection/">85. Carotid Artery Dissection – Marcia Moran</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Marcia Moran woke one morning after having experienced a stroke in her sleep due to a carotid artery dissection. Marcia had to drag herself on the floor with one hand to raise the alarm. Marcia Moran woke one morning after having experienced a stroke in her sleep due to a carotid artery dissection. Marcia had to drag herself on the floor with one hand to raise the alarm. Recovery After Stroke 56:03 84. Diabetes Can Lead to Stroke – Jessica Tagami https://recoveryafterstroke.com/diabetes-can-lead-to-stroke/ Mon, 20 Jan 2020 12:00:00 +0000 https://recoveryafterstroke.com/?p=3262 <p>Jessica Tagami was not surprised when her husband Phil experienced a stroke. On reflection, they both knew his work and sleep habits were unsustainable. Undiagnosed type 2 diabetes was the last straw.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/diabetes-can-lead-to-stroke/">84. Diabetes Can Lead to Stroke – Jessica Tagami</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Jessica Tagami was not surprised when her husband Phil experienced a stroke. On reflection, they both knew his work and sleep habits were unsustainable. Undiagnosed type 2 diabetes was the last straw. Jessica Tagami was not surprised when her husband Phil experienced a stroke. On reflection, they both knew his work and sleep habits were unsustainable. Undiagnosed type 2 diabetes was the last straw. Recovery After Stroke 1:11:42 83. Cavernous Malformation at age 20 – Kawan Glover https://recoveryafterstroke.com/cavernous-malformation/ Mon, 13 Jan 2020 12:00:00 +0000 https://recoveryafterstroke.com/?p=3210 <p>Kawan Glover was only 20 years old and studying at college when doctors found a cavernous malformation on his brainstem, 3 surgeries in 3 years meant for some serious life lessons at such a young age.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/cavernous-malformation/">83. Cavernous Malformation at age 20 – Kawan Glover</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Kawan Glover was only 20 years old and studying at college when doctors found a cavernous malformation on his brainstem, 3 surgeries in 3 years meant for some serious life lessons at such a young age. Kawan Glover was only 20 years old and studying at college when doctors found a cavernous malformation on his brainstem, 3 surgeries in 3 years meant for some serious life lessons at such a young age. Recovery After Stroke 1:05:44 82. How To Have A Growth Mindset – Marvin Oka https://recoveryafterstroke.com/growth-mindset/ Mon, 06 Jan 2020 12:00:00 +0000 https://recoveryafterstroke.com/?p=3100 <p>Do you have the appropriate attitude, mindset or orientation for what you’re trying to achieve in your stroke recovery? Can you can tell if it’s helping you or not?</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/growth-mindset/">82. How To Have A Growth Mindset – Marvin Oka</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Do you have the appropriate attitude, mindset or orientation for what you’re trying to achieve in your stroke recovery? Can you can tell if it’s helping you or not? Do you have the appropriate attitude, mindset or orientation for what you’re trying to achieve in your stroke recovery? Can you can tell if it’s helping you or not? Recovery After Stroke 1:12:17 81. From Headache To Stroke – Vince Holland https://recoveryafterstroke.com/headache-and-stroke/ Mon, 30 Dec 2019 12:00:39 +0000 https://recoveryafterstroke.com/?p=3097 <p>Vince Holland was 28 years old when a headache he had been managing with over the counter painkillers turned out to be much more sinister than he could ever imagine</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/headache-and-stroke/">81. From Headache To Stroke – Vince Holland</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Vince Holland was 28 years old when a headache he had been managing with over the counter painkillers turned out to be much more sinister than he could ever imagine Vince Holland was 28 years old when a headache he had been managing with over the counter painkillers turned out to be much more sinister than he could ever imagine Recovery After Stroke 59:47 80. Stroke Recovery Mindset – Sally Callie https://recoveryafterstroke.com/stroke-recovery-mindset/ Mon, 23 Dec 2019 11:11:42 +0000 https://recoveryafterstroke.com/?p=3040 <p>Sally's mindset training during her Olympic career held her in good stead for managing her mindset when dealing with the challenges she had to overcome after stroke</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-recovery-mindset/">80. Stroke Recovery Mindset – Sally Callie</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Sally's mindset training during her Olympic career held her in good stead for managing her mindset when dealing with the challenges she had to overcome after stroke Sally's mindset training during her Olympic career held her in good stead for managing her mindset when dealing with the challenges she had to overcome after stroke Recovery After Stroke 1:02:19 79. Young Stroke Survivor at 37 – Erica Wasser https://recoveryafterstroke.com/young-stroke-survivor/ Mon, 16 Dec 2019 07:19:25 +0000 https://recoveryafterstroke.com/?p=3022 <p>Erica Wasser was 37 when she experienced a stroke. Now 18 months after stroke Erica is well on the way to recovery.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/young-stroke-survivor/">79. Young Stroke Survivor at 37 – Erica Wasser</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Erica Wasser was 37 when she experienced a stroke. Now 18 months after stroke Erica is well on the way to recovery. Erica Wasser was 37 when she experienced a stroke. Now 18 months after stroke Erica is well on the way to recovery. Recovery After Stroke 43:16 78. A Stroke Survivor Journey – Bill Gasiamis https://recoveryafterstroke.com/stroke-survivor-journey/ Sun, 08 Dec 2019 18:00:00 +0000 https://recoveryafterstroke.com/?p=2923 <p>In this interview with Mathias Turner from the Chief Life Podcast Bill and Matty discuss the stroke survivor journey from beginning to 8 years and counting.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-survivor-journey/">78. A Stroke Survivor Journey – Bill Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In this interview with Mathias Turner from the Chief Life Podcast Bill and Matty discuss the stroke survivor journey from beginning to 8 years and counting. In this interview with Mathias Turner from the Chief Life Podcast Bill and Matty discuss the stroke survivor journey from beginning to 8 years and counting. Recovery After Stroke 1:18:49 77. Different Types of Memory – Kimberley Meates and Vanessa Bowie https://recoveryafterstroke.com/different-types-of-memory/ Mon, 02 Dec 2019 10:02:15 +0000 https://recoveryafterstroke.com/?p=2878 <p>In this interview with Kimberley Meates and Vanessa Bowie we discuss the different types of memories like, Long Term Memory, Short Term Memory Explicit Memory and Implicit Memory</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/different-types-of-memory/">77. Different Types of Memory – Kimberley Meates and Vanessa Bowie</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In this interview with Kimberley Meates and Vanessa Bowie we discuss the different types of memories like, Long Term Memory, Short Term Memory Explicit Memory and Implicit Memory In this interview with Kimberley Meates and Vanessa Bowie we discuss the different types of memories like, Long Term Memory, Short Term Memory Explicit Memory and Implicit Memory Recovery After Stroke 1:11:57 76. How to Manage Fatigue After Stroke – David Norris https://recoveryafterstroke.com/how-to-manage-fatigue-after-stroke/ Mon, 25 Nov 2019 08:50:34 +0000 https://recoveryafterstroke.com/?p=2705 <p>5Tips to help you manage fatigue after stroke</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/how-to-manage-fatigue-after-stroke/">76. How to Manage Fatigue After Stroke – David Norris</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 5Tips to help you manage fatigue after stroke 5Tips to help you manage fatigue after stroke Recovery After Stroke 44:04 75. Sugar and Brain Health – Belinda Fettke https://recoveryafterstroke.com/belinda-fettke/ Mon, 18 Nov 2019 09:38:16 +0000 https://recoveryafterstroke.com/?p=2572 <p>When Dr Gary Fettke an Orthopaedic Surgeon starting suggesting to his diabetes patients that they would see health benefits from decreasing their sugar consumption, he never expected that it would end in a 2 year court battle.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/belinda-fettke/">75. Sugar and Brain Health – Belinda Fettke</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> When Dr Gary Fettke an Orthopaedic Surgeon starting suggesting to his diabetes patients that they would see health benefits from decreasing their sugar consumption, he never expected that it would end in a 2 year court battle. When Dr Gary Fettke an Orthopaedic Surgeon starting suggesting to his diabetes patients that they would see health benefits from decreasing their sugar consumption, he never expected that it would end in a 2 year court battle. Recovery After Stroke 1:25:43 74. Neofect Hand Rehabilitation – Scott Kim https://recoveryafterstroke.com/neofect-hand-rehabilitation/ Sun, 10 Nov 2019 08:53:34 +0000 https://recoveryafterstroke.com/?p=2486 <p>NEOFECT Home takes tedious stroke recovery exercises and infuses them with fun and interactive games, which exercise your brain & muscles exercise simultaneously to expedite the rehab process.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/neofect-hand-rehabilitation/">74. Neofect Hand Rehabilitation – Scott Kim</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> NEOFECT Home takes tedious stroke recovery exercises and infuses them with fun and interactive games, which exercise your brain & muscles exercise simultaneously to expedite the rehab process. NEOFECT Home takes tedious stroke recovery exercises and infuses them with fun and interactive games, which exercise your brain & muscles exercise simultaneously to expedite the rehab process. Recovery After Stroke 25:51 73. The Fun Five Series – Alcohol https://recoveryafterstroke.com/the-fun-five-series-alcohol/ Mon, 04 Nov 2019 00:39:37 +0000 https://recoveryafterstroke.com/?p=2450 <p>5 Reasons to Quit Alcohol After Stroke is Part 5 and the final interview in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com about the 5 foods to avoid after stroke</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-fun-five-series-alcohol/">73. The Fun Five Series – Alcohol</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 5 Reasons to Quit Alcohol After Stroke is Part 5 and the final interview in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com about the 5 foods to avoid after stroke 5 Reasons to Quit Alcohol After Stroke is Part 5 and the final interview in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com about the 5 foods to avoid after stroke Recovery After Stroke 59:17 72. The Brave Minds Project – Alyssa Carfi https://recoveryafterstroke.com/the-brave-minds-project-alyssa-carfi/ Sun, 27 Oct 2019 03:35:57 +0000 https://recoveryafterstroke.com/?p=2372 <p>Alyssa Carfi founded the Brave Minds Project after a bleed in her brain at age 15 and then brain surgery to remove the cavernoma at age 18</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-brave-minds-project-alyssa-carfi/">72. The Brave Minds Project – Alyssa Carfi</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Alyssa Carfi founded the Brave Minds Project after a bleed in her brain at age 15 and then brain surgery to remove the cavernoma at age 18 Alyssa Carfi founded the Brave Minds Project after a bleed in her brain at age 15 and then brain surgery to remove the cavernoma at age 18 Recovery After Stroke 46:17 71. Living with Inoperable Meningioma – Hannah Derwent https://recoveryafterstroke.com/inoperable-meningioma/ Tue, 15 Oct 2019 05:15:10 +0000 https://recoveryafterstroke.com/?p=2283 <p>Hannah Derwent is a mum of two young children when she had to undergo brain surgery to manage a benign meningioma that was growing in her brain stem.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/inoperable-meningioma/">71. Living with Inoperable Meningioma – Hannah Derwent</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Hannah Derwent is a mum of two young children when she had to undergo brain surgery to manage a benign meningioma that was growing in her brain stem. Hannah Derwent is a mum of two young children when she had to undergo brain surgery to manage a benign meningioma that was growing in her brain stem. Recovery After Stroke 1:15:48 70. Share Your Stroke Of Genius – Kyle Mengelkamp https://recoveryafterstroke.com/kyle-mengelkamp/ Tue, 01 Oct 2019 00:25:19 +0000 https://recoveryafterstroke.com/?p=2130 <p>Kyle Mengelkamp experienced a stroke at 11 years of age and 22 years later is a video producer who enjoy life, loves to enrich others, discover new adventures, and make a difference to other stroke survivors. </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/kyle-mengelkamp/">70. Share Your Stroke Of Genius – Kyle Mengelkamp</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Kyle Mengelkamp experienced a stroke at 11 years of age and 22 years later is a video producer who enjoy life, loves to enrich others, discover new adventures, and make a difference to other stroke survivors. Kyle Mengelkamp experienced a stroke at 11 years of age and 22 years later is a video producer who enjoy life, loves to enrich others, discover new adventures, and make a difference to other stroke survivors. Recovery After Stroke 1:09:30 69. Sagittal Thrombosis & Stroke – Tricia Alexander https://recoveryafterstroke.com/sagittal-thrombosis/ Tue, 24 Sep 2019 20:25:40 +0000 https://recoveryafterstroke.com/?p=2078 <p>Tricia Alexander experienced a Stroke which was as a result of a Sagittal Thrombosis, less than a week after giving birth to her 2nd child</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/sagittal-thrombosis/">69. Sagittal Thrombosis & Stroke – Tricia Alexander</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Tricia Alexander experienced a Stroke which was as a result of a Sagittal Thrombosis, less than a week after giving birth to her 2nd child Tricia Alexander experienced a Stroke which was as a result of a Sagittal Thrombosis, less than a week after giving birth to her 2nd child Recovery After Stroke 52:03 68. Rewellio Virtual Reality Stroke Therapy – Georg Teufl & Andy Gstoll https://recoveryafterstroke.com/rewellio/ Wed, 04 Sep 2019 11:08:36 +0000 https://recoveryafterstroke.com/?p=2051 <p>Georg Teufl is an occupation therapist and the founder Rewellio the virtual reality software that assists patients to get more therapy time during recovery from stroke or brain injury.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/rewellio/">68. Rewellio Virtual Reality Stroke Therapy – Georg Teufl & Andy Gstoll</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Georg Teufl is an occupation therapist and the founder Rewellio the virtual reality software that assists patients to get more therapy time during recovery from stroke or brain injury. Georg Teufl is an occupation therapist and the founder Rewellio the virtual reality software that assists patients to get more therapy time during recovery from stroke or brain injury. Recovery After Stroke 55:11 67. The Fun Five Series | Dairy – Stacey & Matty Turner https://recoveryafterstroke.com/5-reason-to-reduce-dairy-after-stroke/ Tue, 27 Aug 2019 06:40:52 +0000 https://recoveryafterstroke.com/?p=2038 <p>5 Reasons to Quit Dairy After Stroke is Part 4 in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/5-reason-to-reduce-dairy-after-stroke/">67. The Fun Five Series | Dairy – Stacey & Matty Turner</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 5 Reasons to Quit Dairy After Stroke is Part 4 in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com 5 Reasons to Quit Dairy After Stroke is Part 4 in a series of 5 interviews recorded with Stacey and Matty Turner from www.TheChiefLife.com Recovery After Stroke 59:16 66. But You Look So Normal – Chris & Kara Russo https://recoveryafterstroke.com/but-you-look-so-normal/ Sun, 18 Aug 2019 03:10:13 +0000 https://recoveryafterstroke.com/?p=1963 <p>Kara suffered a massive stroke, and Chris was in a coma that left him paralyzed after a bout with meningitis and encephalitis. They met in rehab, fell in love and wrote a book about it.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/but-you-look-so-normal/">66. But You Look So Normal – Chris & Kara Russo</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Kara suffered a massive stroke, and Chris was in a coma that left him paralyzed after a bout with meningitis and encephalitis. They met in rehab, fell in love and wrote a book about it. Kara suffered a massive stroke, and Chris was in a coma that left him paralyzed after a bout with meningitis and encephalitis. They met in rehab, fell in love and wrote a book about it. Recovery After Stroke 51:36 65. Stroke, Pregnancy, And Bad Manners – Emily Sara Gable https://recoveryafterstroke.com/stroke-pregnancy/ Tue, 06 Aug 2019 10:21:00 +0000 https://recoveryafterstroke.com/?p=1941 <p>In 2008 Emily Sara Gable experienced an Ischemic Stroke Stroke During Pregnancy due to a blood clot, while she was carrying her second child.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-pregnancy/">65. Stroke, Pregnancy, And Bad Manners – Emily Sara Gable</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In 2008 Emily Sara Gable experienced an Ischemic Stroke Stroke During Pregnancy due to a blood clot, while she was carrying her second child. In 2008 Emily Sara Gable experienced an Ischemic Stroke Stroke During Pregnancy due to a blood clot, while she was carrying her second child. Recovery After Stroke 1:23:33 64. The Fun Five Series | Gluten – Stacey & Matty Turner https://recoveryafterstroke.com/quit-gluten-after-stroke/ Tue, 23 Jul 2019 03:43:27 +0000 https://recoveryafterstroke.com/?p=1872 <p>How your health will improve if you Quit Gluten After Stroke, is Part 3 in a series of 5 interviews that I have recorded with Stacey and Matty Turner from the Chief Life.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/quit-gluten-after-stroke/">64. The Fun Five Series | Gluten – Stacey & Matty Turner</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> How your health will improve if you Quit Gluten After Stroke, is Part 3 in a series of 5 interviews that I have recorded with Stacey and Matty Turner from the Chief Life. How your health will improve if you Quit Gluten After Stroke, is Part 3 in a series of 5 interviews that I have recorded with Stacey and Matty Turner from the Chief Life. Recovery After Stroke 1:05:09 63. How To Overcome Trauma – Justin Sunseri https://recoveryafterstroke.com/how-to-overcome-trauma/ Mon, 15 Jul 2019 02:34:29 +0000 https://recoveryafterstroke.com/?p=1858 <p>Justin Sunseri is licensed marriage & family therapists as well as the host of the Polyvagal podcast. In the interview about Trauma we discuss, How to recognise Trauma, How to acknowledge Trauma, How to deal with Trauma, and How to move on from Trauma</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/how-to-overcome-trauma/">63. How To Overcome Trauma – Justin Sunseri</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Justin Sunseri is licensed marriage & family therapists as well as the host of the Polyvagal podcast. In the interview about Trauma we discuss, How to recognise Trauma, How to acknowledge Trauma, How to deal with Trauma, and How to move on from Trauma Justin Sunseri is licensed marriage & family therapists as well as the host of the Polyvagal podcast. In the interview about Trauma we discuss, How to recognise Trauma, How to acknowledge Trauma, How to deal with Trauma, and How to move on from Trauma Recovery After Stroke 55:41 62. Recovery from PFO – Heather Leigh Whitley https://recoveryafterstroke.com/pfo-patent-foramen-ovale-stroke/ Fri, 05 Jul 2019 03:49:53 +0000 https://recoveryafterstroke.com/?p=1758 <p>Heather Whitley is a mom of 5, a midwife and a ski coach, who experienced a stroke that was most likely related to a PFO (patent foramen ovale)</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/pfo-patent-foramen-ovale-stroke/">62. Recovery from PFO – Heather Leigh Whitley</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Heather Whitley is a mom of 5, a midwife and a ski coach, who experienced a stroke that was most likely related to a PFO (patent foramen ovale) Heather Whitley is a mom of 5, a midwife and a ski coach, who experienced a stroke that was most likely related to a PFO (patent foramen ovale) Recovery After Stroke 1:02:19 61. The Fun Five Series | Caffeine – Stacey & Matty Turner https://recoveryafterstroke.com/7-reasons-to-quit-caffeine-after-stroke/ Sun, 23 Jun 2019 03:03:43 +0000 https://recoveryafterstroke.com/?p=1726 <p>7 Reasons to Quit Caffeine After Stroke is Part 2 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/7-reasons-to-quit-caffeine-after-stroke/">61. The Fun Five Series | Caffeine – Stacey & Matty Turner</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 7 Reasons to Quit Caffeine After Stroke is Part 2 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life. 7 Reasons to Quit Caffeine After Stroke is Part 2 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life. Recovery After Stroke 50:54 59. I’ll Be Ok It’s Just A Hole In My Head – Mimi Hayes https://recoveryafterstroke.com/mimi-hayes/ Tue, 18 Jun 2019 04:39:19 +0000 https://recoveryafterstroke.com/?p=1698 <p>Mimi Hayes is a New York-based comedian and author of the memoir "I'll Be OK, It's Just a Hole in My Head." and a stroke survivor at the age of twenty-two</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/mimi-hayes/">59. I’ll Be Ok It’s Just A Hole In My Head – Mimi Hayes</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Mimi Hayes is a New York-based comedian and author of the memoir "I'll Be OK, It's Just a Hole in My Head." and a stroke survivor at the age of twenty-two Mimi Hayes is a New York-based comedian and author of the memoir "I'll Be OK, It's Just a Hole in My Head." and a stroke survivor at the age of twenty-two Recovery After Stroke 1:10:48 60. How mBraining Helps In Stroke Recovery – Beth Gray https://recoveryafterstroke.com/mbraining-and-stroke-recovery-beth-gray/ Sat, 15 Jun 2019 07:57:43 +0000 https://recoveryafterstroke.com/?p=1713 <p>In this interview with life coach Beth Gray we discuss how the mBraining helped me resolve the emotional trauma of stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/mbraining-and-stroke-recovery-beth-gray/">60. How mBraining Helps In Stroke Recovery – Beth Gray</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In this interview with life coach Beth Gray we discuss how the mBraining helped me resolve the emotional trauma of stroke. In this interview with life coach Beth Gray we discuss how the mBraining helped me resolve the emotional trauma of stroke. Recovery After Stroke 48:23 58. Positive Impact Movement Interview Part 2 – My Stroke Recovery https://recoveryafterstroke.com/positive-impact-movement-interview-part-2-my-stroke-recovery/ Sat, 08 Jun 2019 12:53:45 +0000 https://recoveryafterstroke.com/?p=1682 <p>Leaving no stone unturned in my stroke recovery.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/positive-impact-movement-interview-part-2-my-stroke-recovery/">58. Positive Impact Movement Interview Part 2 – My Stroke Recovery</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Leaving no stone unturned in my stroke recovery. Leaving no stone unturned in my stroke recovery. Recovery After Stroke 1:01:24 57. Positive Impact Movement Interview Part 1 – Brain Surgery https://recoveryafterstroke.com/brain-surgery/ Mon, 03 Jun 2019 12:53:28 +0000 https://recoveryafterstroke.com/?p=1657 <p>Preparation for Brain Surgery</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/brain-surgery/">57. Positive Impact Movement Interview Part 1 – Brain Surgery</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Preparation for Brain Surgery Preparation for Brain Surgery Recovery After Stroke 50:00 56. Recovery from AVM (Arteriovenous Malformation) Stroke – Jason Gaudette https://recoveryafterstroke.com/avm-arteriorvenous-malformation/ Sun, 26 May 2019 22:23:48 +0000 https://recoveryafterstroke.com/?p=1646 <p>When his wife asked him why he was slurring his words Jason Gaudette had no idea that, that was a sign of stroke. </p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/avm-arteriorvenous-malformation/">56. Recovery from AVM (Arteriovenous Malformation) Stroke – Jason Gaudette</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> When his wife asked him why he was slurring his words Jason Gaudette had no idea that, that was a sign of stroke. When his wife asked him why he was slurring his words Jason Gaudette had no idea that, that was a sign of stroke. Recovery After Stroke 59:58 55. Overcoming Depression After Stroke – Lianne Russel https://recoveryafterstroke.com/depression-after-stroke/ Fri, 17 May 2019 01:08:03 +0000 https://recoveryafterstroke.com/?p=1633 <p>Lianne W. Russel is a mum of two who at 36 bent over to pick up a toy box and when she looked up tore her artery which caused a stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/depression-after-stroke/">55. Overcoming Depression After Stroke – Lianne Russel</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Lianne W. Russel is a mum of two who at 36 bent over to pick up a toy box and when she looked up tore her artery which caused a stroke. Lianne W. Russel is a mum of two who at 36 bent over to pick up a toy box and when she looked up tore her artery which caused a stroke. Recovery After Stroke 1:04:11 54. How I am Dealing with Sadness – Bill Gasiamis https://recoveryafterstroke.com/feeling-sad/ Wed, 15 May 2019 21:26:20 +0000 https://recoveryafterstroke.com/?p=1612 <p>In the last two months I have lost 2 friends both aged in their 40's. I find myself very sad and and confused</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/feeling-sad/">54. How I am Dealing with Sadness – Bill Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> In the last two months I have lost 2 friends both aged in their 40's. I find myself very sad and and confused In the last two months I have lost 2 friends both aged in their 40's. I find myself very sad and and confused Recovery After Stroke 15:28 53. How Drugs Led to Stroke – Stephen Heaney https://recoveryafterstroke.com/how-drugs-led-to-stroke-stephen-heaney/ Thu, 09 May 2019 10:00:16 +0000 https://recoveryafterstroke.com/?p=1572 <p>Stephen Heaney is a long time drug addict whose habit led to him collapsing on the floor at his home after an evening of heavy drug use.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/how-drugs-led-to-stroke-stephen-heaney/">53. How Drugs Led to Stroke – Stephen Heaney</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Stephen Heaney is a long time drug addict whose habit led to him collapsing on the floor at his home after an evening of heavy drug use. Stephen Heaney is a long time drug addict whose habit led to him collapsing on the floor at his home after an evening of heavy drug use. Recovery After Stroke 41:13 52. The Fun Five Series – Sugar – Stacey & Matty Turner https://recoveryafterstroke.com/8-reason-you-should-quit-sugar-after-stroke/ Thu, 02 May 2019 07:00:29 +0000 https://recoveryafterstroke.com/?p=1509 <p>8 Reasons to quit Sugar is episode 1 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/8-reason-you-should-quit-sugar-after-stroke/">52. The Fun Five Series – Sugar – Stacey & Matty Turner</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 8 Reasons to quit Sugar is episode 1 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life 8 Reasons to quit Sugar is episode 1 in a series of 5 that I have recorded with Stacey and Matty Turner from the Chief Life Recovery After Stroke 49:59 51. 5th Annual Stroke and Occupational Therapy Lecture – Bill Gasiamis https://recoveryafterstroke.com/5th-annual-stroke-and-occupational-therapy-lecture-bill-gasiamis/ Thu, 25 Apr 2019 21:46:11 +0000 https://recoveryafterstroke.com/?p=1490 <p>3rd Occupational Therapy Lecture at Australian Catholic University</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/5th-annual-stroke-and-occupational-therapy-lecture-bill-gasiamis/">51. 5th Annual Stroke and Occupational Therapy Lecture – Bill Gasiamis</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> 3rd Occupational Therapy Lecture at Australian Catholic University 3rd Occupational Therapy Lecture at Australian Catholic University Recovery After Stroke 48:20 50. Interview On The Emotional Autoimmunity Podcast – Kerry Jeffrey https://recoveryafterstroke.com/interview-on-the-emotional-autoimmunity-podcast/ Tue, 16 Apr 2019 12:04:23 +0000 https://recoveryafterstroke.com/?p=1409 <p>Recently I was on the Emotional Autoimmunity podcast with Kerry Jeffrey. Listen to my story.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/interview-on-the-emotional-autoimmunity-podcast/">50. Interview On The Emotional Autoimmunity Podcast – Kerry Jeffrey</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Recently I was on the Emotional Autoimmunity podcast with Kerry Jeffrey. Listen to my story. Recently I was on the Emotional Autoimmunity podcast with Kerry Jeffrey. Listen to my story. Recovery After Stroke 1:11:27 49. Stroke and Stress – Darren Walker https://recoveryafterstroke.com/stroke-and-stress-darren-walker/ Fri, 12 Apr 2019 10:03:42 +0000 https://recoveryafterstroke.com/?p=1450 <p>Darren Walker is a father of two who learned the hard way about stroke and stress.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-and-stress-darren-walker/">49. Stroke and Stress – Darren Walker</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Darren Walker is a father of two who learned the hard way about stroke and stress. Darren Walker is a father of two who learned the hard way about stroke and stress. Recovery After Stroke 57:23 48. Stroke Recovery and Sport – Musa Pam https://recoveryafterstroke.com/stroke-recovery-and-sport-musa-pam/ Sat, 06 Apr 2019 01:46:07 +0000 https://recoveryafterstroke.com/?p=1440 <p>Musa Pam is a Stroke Survivor who rediscovered his love of golf even though he can only swing with one arm.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-recovery-and-sport-musa-pam/">48. Stroke Recovery and Sport – Musa Pam</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Musa Pam is a Stroke Survivor who rediscovered his love of golf even though he can only swing with one arm. Musa Pam is a Stroke Survivor who rediscovered his love of golf even though he can only swing with one arm. Recovery After Stroke 1:07:17 47. The Great Now What? – Maggie Whittum https://recoveryafterstroke.com/the-great-now-what/ Mon, 01 Apr 2019 09:31:51 +0000 https://recoveryafterstroke.com/?p=1412 <p>Maggie Whittum is a brain stem stroke SURVIVOR, not a stroke victim. Let's find meaning & beauty in what is an otherwise ugly experience.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/the-great-now-what/">47. The Great Now What? – Maggie Whittum</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Maggie Whittum is a brain stem stroke SURVIVOR, not a stroke victim. Let's find meaning & beauty in what is an otherwise ugly experience. Maggie Whittum is a brain stem stroke SURVIVOR, not a stroke victim. Let's find meaning & beauty in what is an otherwise ugly experience. Recovery After Stroke 1:15:53 46. Young Stroke Survivor – Jenny McAllister https://recoveryafterstroke.com/blink-once-for-yes-and-twice-for-no-jenny-mcallister/ Sat, 23 Mar 2019 22:30:45 +0000 https://recoveryafterstroke.com/?p=1415 <p>At the age of just 21, Jenny McAllister suffered a massive brain stem haemorrhage and was given less than 1% chance of survival.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/blink-once-for-yes-and-twice-for-no-jenny-mcallister/">46. Young Stroke Survivor – Jenny McAllister</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> At the age of just 21, Jenny McAllister suffered a massive brain stem haemorrhage and was given less than 1% chance of survival. At the age of just 21, Jenny McAllister suffered a massive brain stem haemorrhage and was given less than 1% chance of survival. Recovery After Stroke 1:02:24 45. Post Traumatic Stress and Stroke – Travis Cowsert https://recoveryafterstroke.com/post-traumatic-stress-and-stroke-travis-cowsert/ Sun, 10 Mar 2019 22:16:49 +0000 https://recoveryafterstroke.com/?p=1333 <p>Travis Cowsert is a former US Marine who experienced a stroke and nearly 10 years later is still overcoming the challenges that stroke can create.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/post-traumatic-stress-and-stroke-travis-cowsert/">45. Post Traumatic Stress and Stroke – Travis Cowsert</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Travis Cowsert is a former US Marine who experienced a stroke and nearly 10 years later is still overcoming the challenges that stroke can create. Travis Cowsert is a former US Marine who experienced a stroke and nearly 10 years later is still overcoming the challenges that stroke can create. Recovery After Stroke 1:13:10 44. My Husband Had A Stroke – Royce Morales https://recoveryafterstroke.com/my-husband-had-a-stroke/ Fri, 08 Mar 2019 21:36:12 +0000 https://recoveryafterstroke.com/?p=1324 <p>When Royce's husband (Michael) of almost thirty years suddenly had a massive stroke, Royce's world was turned upside down.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/my-husband-had-a-stroke/">44. My Husband Had A Stroke – Royce Morales</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> When Royce's husband (Michael) of almost thirty years suddenly had a massive stroke, Royce's world was turned upside down. When Royce's husband (Michael) of almost thirty years suddenly had a massive stroke, Royce's world was turned upside down. Recovery After Stroke 56:03 43. Aphasia Help After Stroke – Tracey Bode https://recoveryafterstroke.com/aphasia-help-after-stroke-tracey-bode/ Mon, 25 Feb 2019 07:51:38 +0000 https://recoveryafterstroke.com/?p=1309 <p>Tracy Bode is a clinical Speech Pathologist who found her passion in Alternative and Augmentative Communication to provide Aphasia Help for patients after stroke. YouTube LinkedIn Twitter Highlights: 02:20 What Tracy does 13:40 What is Aphasia 22:30 Alternative Augmentative Communication 35:20 Stroke can affect so many aspects of life 39:07 Benefits of support groups especially […]</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/aphasia-help-after-stroke-tracey-bode/">43. Aphasia Help After Stroke – Tracey Bode</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Tracy Bode is a clinical Speech Pathologist who found her passion in Alternative and Augmentative Communication to provide Aphasia Help for patients after stroke. YouTube LinkedIn Twitter Highlights: 02:20 What Tracy does 13:40 What is Aphasia 22:30 Al... Tracy Bode is a clinical Speech Pathologist who found her passion in Alternative and Augmentative Communication to provide Aphasia Help for patients after stroke. YouTube LinkedIn Twitter Highlights: 02:20 What Tracy does 13:40 What is Aphasia 22:30 Alternative Augmentative Communication 35:20 Stroke can affect so many aspects of life 39:07 Benefits of support groups especially […] Recovery After Stroke 54:54 41. Stroke Of Luck – Farley Cadena https://recoveryafterstroke.com/stroke-of-luck-farley-cadena/ Sun, 27 Jan 2019 23:55:06 +0000 https://recoveryafterstroke.com/?p=1282 <p>Farley Cadena is an actor and a stroke survivor who performs a one person show raising awareness about stroke.</p> <p>The post <a rel="nofollow" href="https://recoveryafterstroke.com/stroke-of-luck-farley-cadena/">41. Stroke Of Luck – Farley Cadena</a> appeared first on <a rel="nofollow" href="https://recoveryafterstroke.com">Recovery After Stroke</a>.</p> Farley Cadena is an actor and a stroke survivor who performs a one person show raising awareness about stroke. Farley Cadena is an actor and a stroke survivor who performs a one person show raising awareness about stroke. Recovery After Stroke 1:05:35