Discover the power of a holistic approach to recovery and find hope on your journey as a caregiver or stroke survivor. Tsgoyna shares her expert advice, so don’t miss this opportunity to find hope on your own recovery journey
Hope After Stroke for Caregivers and Survivors
01:20 Bill’s guest introduction
04:06 Why Tsgoyna Tanzman wrote the book
16:32 What is the Nocebo effect?
20:33 What’s next now that you’re home?
30:43 What is ICU psychosis?
33:25 Preparing for homecoming after hospitalization.
40:06 The book is for caregivers and survivors
49:57 What is the penumbra? What does it mean?
1:03:30 Finding meaning in stroke recovery
1:18:24 The importance of forgiveness and acceptance in stroke recovery.
1:24:46 The stroke got me out of my head.
Tsgoyna Tanzman 0:00
You talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. Right? Why not? If the end goal is to feel better to do that, and we do feel better. There’s also the nocebo effect. I don’t know if you know what that is?
Bill Gasiamis 0:21
I’ve heard about it tell me.
Tsgoyna Tanzman 0:22
Yeah, well, that is where a person can feel worse because what they’re programmed to hear, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things.
Tsgoyna Tanzman 0:46
So the nocebo effect is that limiting belief that we can internalize by a person, a well-respected person whose words are impacting us, or limiting our own ability to achieve.
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill’s guest introduction – Tsgoyna Tanzman
Bill Gasiamis 1:20
Hello, and welcome once again to the recovery after stroke podcast. This is episode 236. And my guest today is Tsgoyna Tanzman the author of the highly successful book Hope After Stroke For Caregivers And Survivors: The Holistic Guide To Getting Your Life Back.
Bill Gasiamis 1:37
Her engaging and moving stories have also been featured in 15 Different Chicken Soup for the Soul anthologies. She’s also a contributor to thrive global and writes about mental health for I love recovery cafe, the largest online addiction recovery site, Tsgoyna Tanzman, welcome to the podcast.
Tsgoyna Tanzman 1:59
Thank you. It’s great to be here.
Bill Gasiamis 2:01
My pleasure. It’s great to be awake. Instead of slept through our last appointment like I did.
Tsgoyna Tanzman 2:08
Well, you come by it. Honestly, it’s very early where you are. It’s a whole other day where I am.
Bill Gasiamis 2:14
You know, when you’re having one of those beautiful sleeps, and you get to the other side of it. And then when you wake up you go, Oh my gosh, I think I’ve missed something. And then it was about five emails from you going, are you okay? Is everything okay? Are you there? Where are you? And I thought, oh, no, I’ve done the wrong thing I’ve slept through. It’s the first time I’ve slept through a podcast in 235 podcasts. So you’re the lucky first.
Tsgoyna Tanzman 2:42
Well, I’m so glad I was your first Bill.
Bill Gasiamis 2:47
That’s hilarious. Hey, thank you so much for reaching out and letting me know firstly about your book, which we’re going to talk about, Hope After Stroke. But first, tell me a little bit about you.
Tsgoyna Tanzman 2:58
Yeah, so I’m a speech-language pathologist and a life coach. And I’ve worked with stroke survivors and those with traumatic brain injury for well over 30 years at this point now. And, you know, I live in California. And I’ve had the opportunity though, because I have lived in various places in the country in the United States.
Tsgoyna Tanzman 3:26
I’ve lived in New York, I’ve lived in Florida, I’ve lived in Washington State, and California. And wherever I go I see people who are recovering from stroke, recovering from brain injury, and it doesn’t matter where you live. So many of the same questions came up so many of the same concerns. And most importantly, for me, as a speech-language pathologist, but always working in that coaching sort of aspect of it, because quite honestly, your mindset is the most important thing for recovery.
Why Tsgoyna Tanzman wrote the book Hope After Stroke
Tsgoyna Tanzman 4:06
And I really wrote this book because I wanted people to feel empowered. I wanted them to take ownership, and I wanted them to feel smart. So that’s kind of why I wrote the book. I you know, I guess I had gotten to a place in my life. I was just turning 60. And my mother died at 64. My father died at 68. And there was a part of me that said, What am I leaving behind? What can I really leave behind?
Tsgoyna Tanzman 4:41
I would drive around and I’d see buildings built and I could say, well, those people can say I built that it’s here, right? And writing was a skill of mine. I’ve always been able to write. I’ve had a bunch of funny stories and humorous things published in Chicken Soup for the Soul.
Tsgoyna Tanzman 5:00
But what Like, what can I leave, and I got this download in a meditation really, which was to write the book, and I went, Okay, but I’m writing the book I want to write, and that is the holistic guide to getting your life back. And it’s going to be different. And it’s going to be kind of a challenge to people, maybe in my academic community, that I could utter the word holistic, right, as as if that wasn’t scientific enough. So that’s what I decided and I did.
Bill Gasiamis 5:33
That’s a good one, that’s a great thing to decide. So you became a speech language pathologist? Have you been touched by somebody who’s had a stroke in your family personally, that made you go down that path? Or was it just an area of passion or an area of interest that you followed?
Tsgoyna Tanzman 5:53
Yeah, it was actually, because my grandmother did have a stroke. And it was just at the time, where I was starting college, and really not knowing, you know, what I wanted to major in or what I wanted to do. And my mother said, why don’t you take a look and see what this speech therapist is doing with your grandmother, you’re always been interested in communication, you’ve always been interested in speaking with people.
Tsgoyna Tanzman 6:20
And, you know, from the time I was a little girl, I thought I wanted to work in an orphanage and help little kids. And the more I looked at what this speech therapist was doing with my grandmother, I got curious about the topic, the interest, the field. And the more I studied, the more I liked, and it all sort of snowballed from there.
Bill Gasiamis 6:44
Yeah, a lot of people you hear who have been touched by stroke, as a caregiver or a family member, or somebody who’s not had a stroke, do get really encouraged and enthusiastic about helping other people have been through similar thing.
Bill Gasiamis 6:58
And I’m on the same you, you kind of go through that process. I’ve learned a bit, I know a few things, I could pass that down to the next lot of people who are coming through, unfortunately, and who are feeling like they’re in the wilderness at the moment, and it’s something that I experienced, for sure. And then it was, Who do I reach out to to get that information.
Bill Gasiamis 7:21
So I reached out to wherever I could, but when I started on my journey, it was 2012. And it was, in a time where there wasn’t a lot of online resources, there wasn’t a lot of online communities. And the ones that were there were clunky, and not really well run and weren’t run all the time, because the people that were running them were stroke survivors. So they’re all unwell, and they’re all trying to stay on their feet.
Bill Gasiamis 7:47
And there were some books that you could pick up and read, but there just wasn’t a proliferation of different types of books so that you could have a few different ways to approach this, you had a very clinical one way approach. And I think that a lot of information that I missed out on was getting what I thought was, and where I thought I needed to get it from was from the hospital saying to me, Okay, now that you’re gone home, you’re going to do these things, and it’s like, I got none of that information.
Bill Gasiamis 8:19
It was we fixed you up, we patched it up, go home, see you later at the next appointment. And that was a bit of a shock. When I think about that, and when I hear other stroke survivors talk about that, I know that that’s not their role. Their role is not to educate us about what we’re going to do when we get home. That’s become our responsibility.
Bill Gasiamis 8:41
And it’s a big responsibility, because I’ve got to do that when I’m recovering from stroke and dealing with fatigue and not able to work and not able to walk and move my hand and sometimes not able to talk and it’s ridiculous that it’s my responsibility to teach myself how to get better. After all the things that I need to get better, that are necessary after I go home from the hospital. And it was such a struggle.
Bill Gasiamis 9:15
And that’s what a lot of people complain about right now, a lot of stroke survivors who I’ve talked to on my Instagram page, that’s what they complain about. So we do look for other people to give us guidance. And your book is called Hope After Stroke. We will talk about it in a little while Hope After Stroke For Caregivers and Survivors.
Bill Gasiamis 9:37
The holistic guide to getting your life back, so holistic is one of those words overused by a lot of people, throw it around. I potentially, well, I don’t overuse, but I use it. And for me, holistic is a really important approach to stroke recovery. What does it mean for you to approach recovery in a holistic manner, what does that mean?
Tsgoyna Tanzman 10:03
Yeah, totally means to me that there is a whole human being here. So as a speech therapist working in the hospitals, we have this very convenient way of vivisecting a person, right, the speech therapists worked from the neck up, the occupational therapist worked from the neck to the hips, and the physical therapist worked from the hips down. And of course, we would meet as a group and we would integrate kinds of things.
Tsgoyna Tanzman 10:34
But there was still this overall lack of understanding that we have this whole human being here, right? With a whole life, that they came to us with a whole life, with relationships with spouses, with children, with work environment, with friends, with dreams, with goals, and because it was just so myopic, this approach that we take in the hospital and making sure everybody has stays within their own lane.
Tsgoyna Tanzman 11:14
I think the person behind all of that is the person that suffered. And it was very difficult to integrate all those things. So that’s one aspect of holistic for me, the other aspect of holistic for me, and by the way, I got a lot of pushback from people that said, maybe you don’t want to use that word, holistic, that’s a dicey word to use. That’s like, a scary thing.
Tsgoyna Tanzman 11:43
You know, like your academic, you know, the people in the medical field are gonna, like, maybe not so as all whoo, whoo, and, you know, chickens being swung over your head? Well, you know, even things like acupuncture, which is considered in our country alternative care, well, that’s the standard of care that takes place in China, right, that they do surgeries, they do brain surgeries using acupuncture.
Tsgoyna Tanzman 12:12
And if you speak to people in the stroke community, and you look at a variety of different therapeutic approaches to managing problems, you’re going to see a wide variety. I wanted people to see what other types of approaches, it’s not just like there’s one and done.
Tsgoyna Tanzman 12:37
And if that doesn’t work for you, sorry, good luck, you know, you’re on your own. So holistic to me, meant really being exposed to what other therapeutic approaches are using, what self care tools can we use, that really was a part of the whole process of recovery,
Bill Gasiamis 13:02
For an intelligent, medical community, a really intelligent medical community, they really miss that thing, where they’re not the “be all end all.” I wouldn’t be alive without surgeons, but I would not expect my surgeon to tell me that I shouldn’t be going to see an acupuncturist. It is non invasive. It doesn’t mean you have to swallow anything or do anything, all you’ve got to do is go and attend and lie there.
Bill Gasiamis 13:31
And perhaps just the fact that they put you in a state of calm, safety, relaxed, decreases your blood pressure, decreases your stress hormone, decreases all those things, and maybe the two pins that they put in there, reroute something. And maybe they do that too, why not, even if they don’t reroute something with the two needles that they put in your leg and one in your head, or whatever they do, it doesn’t really matter.
Bill Gasiamis 13:57
What really matters is that when you go there, and you leave some money down, that you leave feeling better and feeling different, even if it’s a placebo, even if it doesn’t work, even if it’s not real. It doesn’t matter. What matters is that I go there and I have the experience.
Bill Gasiamis 14:11
I went to Reiki, I went to acupuncture, I went to massage, I went to you name it, everything that you can possibly imagine after my brain surgery, and before I went to because I wanted to know for myself whether or not it was beneficial or not. And some things were less beneficial than others.
Bill Gasiamis 14:32
So I didn’t go to them anymore. And the person offering that service is potentially somebody who is doing good for other people, and I’m just not one of them. So who am I to judge, but I did get some right if experiences with acupuncture, I really did find that acupuncture did make a difference.
Bill Gasiamis 14:57
And I had this amazing Reiki practitioner who I went to, who I would go and do an hour session with every so often, and I would just walk out there, out of there feeling just like a completely different person, I have no idea what she did, how she did it, I don’t understand Reiki, all I know is that when I walk in there, I feel different to when I leave. And that is just an amazing thing to be able to offer me, this feeling of lightness, and calmness.
Bill Gasiamis 15:32
And without a raising head and things that just, you know, processing better or working better, I still walk out with the deficits that I’m always going to have my entire life and I’m always going to have my left sided numbness, I’m always going to have some balance issues, I’m always going to have tingling in my arms, I’m always going to be sensitive to hot and cold. But when I walk out of Reiki, it all seems to just go away for a little while. And that is such a blessing.
Tsgoyna Tanzman 16:03
It’s a remarkable thing you’ve moved energy in your body. And you’re right, you know, when we can decrease our stress response, we put our body and our cells in the most optimal condition for healing, for optimizing our body systems for creating resilience within our body because our body does want to heal itself, and to recalibrate itself.
What is the Nocebo effect?
Tsgoyna Tanzman 16:32
And the more we can put our body in that ability to do that. It is a wonderful thing. You know, you talk about the placebo effect, right? It’s fantastic. It’s like, oh, if I could take nothing and feel better, hell yes. But wait, why not? If the end goal is to feel better to do that, and we do feel better? There’s also the nocebo effect. I don’t know if you know what that is.
Bill Gasiamis 17:00
I’ve heard about it, tell me.
Tsgoyna Tanzman 17:01
Yeah, well, that is where a person can feel worse, because what they’re programmed to hear. So very often when we have, you know, and like you said, you needed those surgeons to do the surgery. Absolutely. We need our medical profession. Everybody offers a fantastic ability to do what they’re best at.
Tsgoyna Tanzman 17:27
But for example, I can’t tell you how many patients and you’ll know from dealing with your community, the person that says My doctor said I would never walk or talk again. And here I am, you know, and here I am walking, talking, doing all these things. So the nocebo effect is that limiting belief that we can internalize by a person, a well respected person whose words are impacting us, or limiting our own ability to achieve.
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, and 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 recoveryafterstroke.com where you can download a guide that will help you 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, and 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 Gasiamis 19:08
Yeah, I love your approach. It’s so needed, and there’s not enough of it. And the thing about the medical community, the only thing that I have an issue with is that there’s not enough people who are open to at least if not suggesting alternative therapies as part of a approach to supporting what they’ve done the work that they’ve done, like we’ve done our part now, just go and see if there’s somebody else that can help you with another little part.
Bill Gasiamis 19:46
That’s probably my biggest issue, the lack of willingness to kind of say go and have a look. And they’ll use the excuse that I don’t have any evidence for that or I don’t have the time to look into that etc. Well I think they should they should have time to look into that.
Bill Gasiamis 20:01
And they should have time to be able to gently just make suggestions generally about things that other people have done, that have had some support, that have had some positive experiences and just go, look, it’s not my thing. I don’t do that. You know what I do open heads, I do that type of stuff. But there’s other people that help with other things. Just go and seek them out and see who they are. And just be careful, you don’t find the wrong one and give money to people who promise things and offer things that are certainly not possible, you know.
What’s next now that you’re home?
Tsgoyna Tanzman 20:33
And I think that there’s probably they feel a responsibility that a person does not just go for any kind of crazy thing. But there’s a big gap between dismissing the possibility that there are other things, and that people have gotten better, and that it’s important to explore, I think the biggest challenge is when they say, it’s as good as it gets, right now you’re at six months post-stroke, that’s as good as it gets.
Tsgoyna Tanzman 21:11
And we know that’s not true. We just know that from 1000s and 1000s. of people. And that’s the place where, in their desire to protect people, they can also limit people. And you know, you brought up an interesting thing, Bill, when you talked about, you know, once you let go of the hospital, you’re kind of in this wilderness really.
Tsgoyna Tanzman 21:39
And that is one of the reasons why I wrote this book is like, what happened now that was like life in the hospital? What now that you’re home? And what’s next, now that that level of care, even once you’re home, where maybe you’ve got home health care, people coming in, and therapists coming in? That eventually leaves and then what now? Right? Like, what’s the next phase for you? Because life is therapy, then?
Bill Gasiamis 22:13
Yeah, every single day can be therapy every single day has to be therapy. Because you’ve got a massive mountain to climb, you’ve got a hill, that’s so big, that can be overwhelming. Because if you’re looking at the top of the hill, and you’re trying to work out, what are all the obstacles that aren’t going to come across to get there, you are going to be overwhelmed.
Bill Gasiamis 22:34
And this is the thing about these little offerings, there’s beautiful offerings, that Reiki give that acupuncture, give that all these different things give is I think what they do for me, what they did for me is they give me the next step, even though if it’s not the entire journey, and if that next step is showing me that it is possible to calm my nerves, it is possible to feel great for a little while it is possible to get out of my head.
Bill Gasiamis 23:06
Then that is something that is a great thing to teach me because what I need to do then is go okay, if I’ve done it once, and say I don’t want to do it with a Reiki person again, but how can I do that again, on my own? Where can I do that? It’s going to cost me nothing. Maybe there’s a YouTube video I can download where somebody is going to guide me in a five minute meditation where I can get out of my head. And that’s what those things did for me.
Bill Gasiamis 23:34
They created curiosity about where else, I can go and experience that thing. But do it on my own so that I don’t have to travel an hour to get there an hour to get home. And so that I can become self sufficient at some point. But then also, if I can’t get myself over the line, what I can do is go Hey, Deb, my amazing Reiki practitioner. Can I come and see you? And then she says yes, come and see me. And I’m like, great.
Bill Gasiamis 24:04
Thanks for that you gave me another beautiful gift that hits a head start another path that I can go down and begin my journey again, because it’s not about doing it alone. Clearly, we cannot do this alone you know, we can’t do this alone or we can’t rely sometimes. It’s not sometimes a lot of the times on our loved ones at home because they’ve never been through stroke with us. They’ve got no idea how to do it. And we don’t listen to our loved ones anyway.
Tsgoyna Tanzman 24:37
Right? It’s like being taught to drive from the person that you love most are taught to play golf. Both are not so recommended.
Bill Gasiamis 24:44
It’s not gonna happen. So I want to encourage people about that thing that you said. Where we’re lacking people, the doctors don’t do that they don’t encourage and I’ve spoken about it. I had an amazing interview. For world stroke day, 2022, last year with a guy called Dr. J Mocco. And he was part of the world stroke organization amongst other things. He’s just an amazing guy. He’s a surgeon, he’s a neurologist.
Bill Gasiamis 25:17
He’s a researcher, he does amazing things. And just a couple of days ago, I posted a clip from the video that we did the interview that we did, where he’s just encouraging people that you can recover after one year, two years, three years, you can still get back little bits of movement or something that you lost because of stroke.
Bill Gasiamis 25:41
There’s a lot of reasons why recovery continues to happen and is just going on for about a minute as to why that is the case. So for anyone listening, and watching, you can just go watch episode 222. And listen to that, because that is the most encouraging doctor I’ve ever come across in my life. And I’ve come across some amazing ones. But he’s next level amazing.
Bill Gasiamis 26:04
So hopefully what that does is gives us a bit of a head start into now sort of moving in towards and talking about your book, because I open the first couple of pages and automatically I got stopped. And I’ll tell you where I got stopped. I got stopped when you mentioned the name Peter G. Levine.
Bill Gasiamis 26:25
Can you please tell me how you knew Peter? Because I interviewed Peter for episode 135. And Peter is an amazing guy. And I know that he’s passed away. And I was so shocked. And I couldn’t believe it. Can you tell me a little bit about Peter and how you got to know him.
Tsgoyna Tanzman 26:45
I got to know him through email because I read his book, of course, and found it to be incredible. And I knew that I studied his work I knew where he got his training. And I was really very fascinated to speak with him. So I emailed him, I never met him personally. But we had a very lively back-and-forth email correspondence. And it’s really interesting because I shared something with him.
Tsgoyna Tanzman 27:16
And he was pretty emphatic about making sure that I labeled it Levine’s stages of recovery. And I was happy to do that. I was really, really happy to do that. I felt like we had a great spirit of connection, and professionalism. But that was friendly and useful to further this idea of helping patients.
Tsgoyna Tanzman 27:51
And I too, was utterly shocked to hear on another podcast that he had passed. And quite honestly, I looked to find out any information. And I really couldn’t find any information. He was a phenomenal researcher, very dedicated to the field. And his work is long lasting in this community.
Bill Gasiamis 28:17
Yeah, I think he passed from ALS, or motor neuron disease. And it seemed to be very quick, very rapid. It wasn’t that long after I interviewed him that he passed away and somebody on the video on my YouTube channel where I’ve got the interview with Peter.
Bill Gasiamis 28:38
Somebody said, Do you know that Peter Levine passed away? I was stunned. I didn’t know. So it’s great that we have that common connection I really love that. Now, tell me about the structure of your book. How is your book structured?
Tsgoyna Tanzman 28:59
Well, I decided that I wanted people to have sort of a roadmap so to speak. Because like you said, you get to the hospital right? That’s the first place everybody ends up is in the hospital. And that’s like, Oh, my God, what happened? I mean, I tried to keep it very simple. Because I’m a really simple person. I wanted it very straightforward. And the first question I thought I would have is like, Oh, my God, what happened?
Tsgoyna Tanzman 29:30
And so the first part of the book is literally what happened? It talks about in, you know, as simplistic terms as possible, not because anybody’s dumb, but because anybody that’s trying to read this right now is probably in an overwhelmed state. The good news is that you seem to be in such a readiness period to consume the information because it’s so important and so relevant to you.
Tsgoyna Tanzman 29:59
So The learning curve is like, fantastic, you’re going to absorb that really quickly. I wanted people to have the facility of communication with their practitioners, with any of the hospital personnel so that when they’re throwing all these medical jargon terms at them, that they are really understanding what that is.
Tsgoyna Tanzman 30:20
So that first part is just really kind of generally explaining what happened, you know, the difference between a block and a bleed in terms of a stroke, but also all the acronyms that we just so easily throw around the OT, the ST, the SLP, the physiatrist, that goes like, what are you talking about? Right?
What is ICU psychosis? – Tsgoyna Tanzman
Tsgoyna Tanzman 30:43
So, given all the terms of who are the people on your team, typical things that happen in the hospital, in ICU, what to be on the lookout for in terms of ICU psychosis? I mean, that is a scary thing for people, and sometimes can be just knowing that in advance, somebody’s prepared for that somebody can have a dialogue with their doctor with their nurse.
Bill Gasiamis 31:15
What is that?
Unknown Speaker 31:16
What is ICU psychosis? So very common thing that happens when a patient is in ICU. And it can happen for a couple of reasons. What it looks like, is a person who is physically aggressive, combative, defiant, is ripping out their tube, pulling things out of their nose. And it can happen for a variety of reasons, right? The brain is, in a hypersensitive state, people are terrified. Now, you put them in an ICU thing where they’re separated from any familiar face.
Tsgoyna Tanzman 31:53
If they’re having any kind of speech impairment, they can’t communicate, so they don’t know what’s happening. It’s exacerbating their fear response, their stress response, then you’ve got all the noises from all the machines, the disorientation of time and place. Frequently, there are no windows in an ICU unit. So there is no access to understanding day from night.
Tsgoyna Tanzman 32:23
It’s very confusing all of this, and it’s very upsetting to the family to see a loved one in restraints, that is, you know, like, why are they doing that? Well, they’re trying to keep them from pulling out these tubes, because that person just is not aware of what it is they just feel like things that are annoying them. So it’s a natural response. So helping to understand why that can happen. It can even happen from dehydration, right?
Tsgoyna Tanzman 32:55
That’s causing a urinary tract infection, which is causing a very different, almost stroke like response that’s going on. So that’s one thing that can occur. But then the next part of that is, like you said, once they are, you know, released from the hospital, typically within about seven to 10 days. I don’t know what it’s like, how long were you hospitalized for you went in for a surgical procedure, right?
Preparing for homecoming after hospitalization
Bill Gasiamis 33:25
Yeah, first time I was in hospital for seven days. That was the first bleed, February 2012. Then the second time, march 2012. I was in there for about three or four days. And then I had brain surgery. And then I was in hospital from the 25th of November in 2014 to a couple of days before Christmas.
Bill Gasiamis 33:53
So around the 23rd of December. So the first few days we’re in ICU in acute care, and all that type of thing. And then after that it was in rehabilitation. So it took about after brain surgery about four days to get to the rehabilitation hospital. And then I was there all up. My entire stay in hospital was about a month.
Tsgoyna Tanzman 34:16
Yeah. And everybody’s course is going to be somewhat different. Sometimes they’ll release somebody and they’ll say, Well, you can be treated in an outpatient setting. Sometimes they’ll go to a skilled nursing facility, if they’re not even ready for rehab, but they still have acute nursing concerns.
Tsgoyna Tanzman 34:38
But at some point when people are released from the hospital, that next phase of what’s next is all about the homecoming really like preparing for homecoming one of the things that I would see with patients, you know, we all have this belief there is better than here, wherever I am.
Tsgoyna Tanzman 34:57
There’s got to be a better there right And so people would say, as soon as I get home from the hospital, it’s like, it’s gonna be great, it’s gonna be great. And it’s not all of a sudden, coming home has its own set of challenges, I see you laughing.
Bill Gasiamis 35:15
It sure does. Falling over, not being able to get to the toilet quickly enough, not being able to get up the stairs. Now, they do in Australia, at least do some preliminary work to ensure that your home is safe, the occupational therapists do that, to ensure you’re going to be able to get into your house and into your bed and all that type of thing. So there’s a bit of work that goes into it.
Bill Gasiamis 35:40
But still, nobody tells you about your specific way that you’re going to trip over. So for me, sitting at the couch, eating some breakfast with a plate in my hand, and then deciding like normal to just get up and walk and take the plate to the kitchen. And not realizing that my leg doesn’t work the way that it used to before all of this saga. So I get up and instantly, my leg just collapses and I fall over and I end up on the ground.
Bill Gasiamis 36:12
I think I didn’t break the plate, I think I managed to save the plate. But smashed my hip and smashed my ribs. And then was in pain from the impact of the fall to make matters worse, so yeah, so there’s a little bit of a discussion about what I can expect at home. And then I’m on my own when that happens. So it’s emotional, so it’s scary.
Bill Gasiamis 36:40
And then you don’t want to tell your loved ones that you fell over because then they’re worried because they’re not going to be with you all the time. Because by that stage, my wife had to go back to work. So it’s a real big challenge getting home was the place I wanted to be.
Bill Gasiamis 36:57
And then it was the most at one stage it was the scariest place to be because of the uncertainty of what was to come while I was there. But it was good to be around in familiar surroundings, that was definitely good.
Tsgoyna Tanzman 37:19
Yeah, and it is there’s great things about it, and really some scary and uncertain things about it. And despite going in and doing a home assessment, they’re not going to be able to get every, you know, concern taken care of and every situation taken care of. And, you know, we of course we try as best as possible to prevent a complication like yours. And most of the accidents occur in a bathroom. Those are typically where most of the really bad injuries can occur.
Tsgoyna Tanzman 37:56
A slip or a fall in a bathroom on a hard surface can end in another head injury, which is the last thing we want to have happen. But even just the routines of being at home. And like you mentioned, your wife went back to work right we’ve got to sort of create the ways in which you have support systems in place for you for safety, in the event that you’re home by yourself, even exiting the house, in terms of a fire or all those safety awareness things that we often just don’t think about.
Tsgoyna Tanzman 38:36
And so that was the second part of this book. And you know, even a caregivers guide I really address in that second part of that homecoming you know the caregivers guide to rewarding routines and understanding why a routine for anybody conserves really important brain real estate, like if we do things on an automatic basis, we don’t have to decide and we decide all over again. So creating structure to a day. Facility facilitates growth in other ways.
Tsgoyna Tanzman 39:16
And as you recover, you know better than I there are certain activities that require more cognitive demand, and certain activities that require more physical demand. And, you know, if you have to make a phone call or if you have to manage some aspect of your business, you’re going to need to have padded time on either side to recover and reboot.
Tsgoyna Tanzman 39:42
Because you’re not up to the same level of complicated cognitive function that you were prior to being hospitalized prior to having the surgery as part of your recovery. It doesn’t mean that you can’t get there. But you’ve got to really conserve and utilize your energy in a really appropriate way.
The book is for caregivers and survivors
Bill Gasiamis 40:06
I’m going to make a suggestion, I love the fact that you actually have said that the book is for caregivers and survivors, it really sounds like it’s for caregivers first, because you’re talking about the things that my wife was asking that nobody had answers for, you’re talking about the stuff that I couldn’t help her with.
Bill Gasiamis 40:27
And that she had to just what do we do now? And it’s a whole bunch of what we do now is we’re coming, and we were like, I don’t know, we just had to work it out and guess and make mistakes of the rest of it. And if you’re somebody who’s listening to this, and you’re a stroke survivor, and you’re curious about the book.
Bill Gasiamis 40:49
Check it out as a potential gift that you could give to one of your caregivers, somebody who needs to know what the hell is going on, and how to manage this and tackle this journey, because this is where my wife lacked information, I lacked my own certain types of information. And then my wife left a whole bunch of her own information, and it would have made a big difference, I think if she had somebody guiding her like this in this way, so this the sense that I get from it.
Tsgoyna Tanzman 41:24
It’s so funny, you should mention that too. Because when I was writing this, and I said, the caregivers guide to, you know, the holistic guide for caregivers and survivors. And again, I have a lot of feedback. Well, who is it for? Is it for the caregivers or for the survivor? And I kept saying, it has to be for both. Because even if you live by yourself, now you’re both your caregiver and your survivor. Yeah. But it’s it’s kind of like a dance at the beginning. The caregiver is leading more.
Tsgoyna Tanzman 41:57
But that caregiver eventually, we hope, anyway, that the survivor is taking more and more responsibility, more and more action towards his or her own recovery. But in the beginning, yes, you are relying on a caregiver and in the book, I answer a lot of the most common questions like why is my loved one behaving so erratically? Why don’t they trust me? Why do they sound like they’re drunk? Why are they crying all the time? Why are they… right? You’re laughing. Do these sound familiar?
Bill Gasiamis 42:34
Oh, my gosh, every one of them tick, tick, tick, tick, tick. It’s so ridiculous. I was really angry at one point, and I used to really lash out of my wife, then I would be very emotional and cry a lot. And there’s a lot of what the hell’s going on here. And then I’d be, you know, a different level of ridiculous, and then she would just be trying to work it all out. And she had no idea. No idea.
Bill Gasiamis 42:59
And we found out eventually, but it took sometimes months and years to find out that there is such a thing as the pseudobulbar affect, and some people will laugh uncontrollably at a funeral from now on. Other people will cry when they see the kitty cat trip over or something. And I say, oh my gosh, how do you navigate it?
Bill Gasiamis 43:21
We didn’t we just accepted it as being how I am now. And without explanation. It’s because of the stroke. We don’t know why there isn’t a label. There’s not a word to it, but you know, whatever. And then all of a sudden, six months down the track. Someone goes Oh, yeah, I used to do that. i It’s called this. Oh, I wish I knew earlier, but I’m glad to know now.
Tsgoyna Tanzman 43:47
Yes, absolutely. Like, and so being able to look at those and go okay, all right. There’s this feeling of like such aloneness, such powerlessness that I think people have in not knowing and you can’t possibly know what questions to ask.
Bill Gasiamis 44:08
Yeah. You don’t know, what you don’t know.
Tsgoyna Tanzman 44:10
Yeah, exactly. Like I know when I go to talk to a web designer about doing a web thing. I look there and my mouth is open. Because I don’t even know the questions to ask
Bill Gasiamis 44:21
You know a web designer, you tell me.
Tsgoyna Tanzman 44:24
Like what am I supposed? I don’t even know what I don’t know. Right. And so that’s definitely part of why I put those in there. And you know, I will talk about in the homecoming thing, this is one area I thought that nobody ever addressed. I will say that there’s a lot more holistic stuff coming around now. But I will say that nobody talked about sex. Nobody talked to the people who had had strokes and said anything about sex?
Tsgoyna Tanzman 45:02
Absolutely not. And there are tons. It’s like, okay, you are still a human being, you are going to have sex or want to have sex, or maybe you don’t want to have sex. But if you do want to have sex, you’re probably thinking like, oh my god, is this safe? Am I gonna have a stroke having sex? You know, like, all these questions that nobody ever wanted to address.
Bill Gasiamis 45:27
Let’s talk about sex.
Tsgoyna Tanzman 45:31
Got a chapter in there called Let’s get physical. Yep, I’m talking about sex.
Bill Gasiamis 45:35
Awesome. Absolutely love it. Now, I’ll tell you why I want to talk about sex. Because when I was in my very first appointments with all my doctors, and then they sent me home after the first seven days, of course, the first question, one of the first questions asked was, am I going to be able to have sex, and they told me to refrain from everything. And sex was on the refrain list, because I had a active bleed and a blood vessel that was potentially going to bleed again.
Bill Gasiamis 46:08
And they didn’t know why it bled, and they couldn’t get exactly worked out what the issue was, because there was, the blood clot was interfering with the MRI, so you couldn’t see the cause on the bleed. They said, No sex. So my wife kind of rolled her eyes. And she kind of thought, well, of course, the only thing after a bleed in the brain, he’s going to be asking about whether he can have sex or not, right. Now as a stroke survivor, who knows that that’s a sensitive issue.
Bill Gasiamis 46:43
I haven’t been able to get anybody on the podcast to talk about that. Not with their own experience about the lack of intimacy, after stroke, or the challenges with intimacy, I haven’t been able to get to that point. If anyone’s listening and wants to come on the podcast to talk about that. Please reach out, go to recoveryafterstroke.com/contact, fill out the contact form. Tell me you want to talk about sex. And I’ll have you on the podcast.
Bill Gasiamis 47:12
So it’s kind of still taboo. But I do feel like it’s taboo from a stroke survivors perspective, because maybe it’s embarrassing, or maybe it’s difficult for the caregivers to hear their partner talk about or for their loved one or their wife or husband to hear about them talk about the lack of sex perhaps, or all the things that are associated with it. I’ve never come across anyone who’s spoken about it. So I’m glad that you’re doing that.
Tsgoyna Tanzman 47:47
Yeah. And I’m certainly not the expert in it. But I did reach out to some experts, and got some great information. One of them came from Mitchell Tepper, who is a spinal cord injury survivor. And he gave me really the most information that I thought was really, really useful. That could be applied, but then I did a lot of other research around that. But I think it’s still an area like you say, that really needs to have some frank conversations.
Tsgoyna Tanzman 48:26
Because it is a source of emotional concern for a lot of people, and shame, and embarrassment and frustration. And these are all part of it. And there’s, you know, from both parts from the from each partner has their own different perspective. But they’re all part of your whole emotional mental well being.
Tsgoyna Tanzman 48:53
And that’s why I think it is so important to really at least peel back the layers and begin to have some conversations with your caregivers and ask some of those questions. So good for you for being able to ask that straightforward, right. A lot of people might want to but be afraid to and, you know, one thing I found that was fascinating, the literature was that actually having an orgasm, only elevates your heart rate to about the level of climbing stairs.
Tsgoyna Tanzman 49:28
And I thought, Oh, well, that’s interesting. Right. And there were some other research in there that was funny about sneezing and drinking coffee and, and how those can, you know, potentially what the risk factors are associated with that compared to having sex. And I think in my book, I went okay, well, I think I’d skip coffee, and have sex. That was my takeaway.
What is the penumbra? What does it mean? – Tsgoyna Tanzman
Bill Gasiamis 49:57
I could go without coffee any day and I’ll leave the next part up to you to think about. I love it. So yeah, that’s a great thing that it’s in there. I’ve highlighted a few other things now. Tell me, so part of, I’m going to set it up before I tell you to talk about this. But I’m going to set it up first for the people listening and watching, which is part of the reason why recovery happens. Two, three, a little while later, whatever you want to call it years later.
Bill Gasiamis 50:34
Part of the reason that happens is because of this thing called the penumbra. And it’s not very widely known or spoken about, and I didn’t hear about it from my doctors. I heard about it online somewhere. And then I did some research into it.
Bill Gasiamis 50:51
And I found out what the amazing Penumbra is that what they’re thinking about the preliminaries and the fact that a lot of people won’t be able to access the brain cells in the penumbra until a little while later, until certain conditions change to allow those brain cells and allow those neuronal connections to come back to life.
Bill Gasiamis 51:13
So can you just give people a bit of a guide as to what the Penumbra is? And why it’s important to know? And how that then supports getting some things back some? What do we call it? Some? I don’t know what to call it. You tell them about the penumbra.
Tsgoyna Tanzman 51:35
Some connectivity, right, some connectivity? So like, if you imagine kind of what a bullseye looks like a target, you know, outer rings, and then inner rings. Typically where the stroke has occurred, right, there’s a core that center point, but all surrounding that. And I think of it like this, again, I like to think of analogies when, you know, if you imagine that there’s an accident on the freeway, we call them freeways here, I don’t know what you call them there.
Tsgoyna Tanzman 52:12
So there’s a point where the cars crash, right, that’s like the area of insult. But there might be debris in a wide scattered area around that, that is still problematic. And when the you know, when for the people that are on the freeway, well, traffic comes to a halt, right, everything comes to a halt, and then they might reroute you off of that freeway.
Tsgoyna Tanzman 52:39
So you’re going around it, and that’s kind of like the slow pathways in your brains of, you know, you can get to an endpoint, but it’s going to take longer, and it’s going to be slower. Well, The Penumbra is that area where all the other debris is. And it’s not the actual area of insult, but there’s a lot of toxic almost like a toxic soup, as your body is trying to recover. And until that area really clears.
Tsgoyna Tanzman 53:10
It’s kind of like they’re stunned, the cells are stunned, they’re not dead, but they’re stunned. And it takes a bit of time for that recovery to occur for, you know, the good aspects of inflammation, right, all the things that are trying to help your body recover is still kind of toxic. And it’s that area where the cells are stunned, but they’re not dead.
Tsgoyna Tanzman 53:38
So they’re coming back on line. Again, if we were trying to use an analogy, if you’ve ever dropped your phone in the toilet, I’ve been there. You don’t want to do that. But then you rush to put it in the rice to let it dry up, right? And the connectivities. Like, oh, it’s starting to glimmer, it’s starting to show up a little bit. It requires a period of time for the cells in your brain to get back on line.
Tsgoyna Tanzman 54:08
And so there is recovery, there is neurogenesis, new neurons are building their grow growing. But it does take time for that to happen. So yes, recovery can take place, we typically see recovery, the most amount of spontaneous recovery, we see is in that first three month period, it slows down a little bit to six months. And that’s where very often the doctors will say, six months, it’s as good as it gets. And that’s just not true. It’s just not true.
Bill Gasiamis 54:47
I love the analogy of the bullseye because it’s like the dartboard you know, it’s everyone’s going for the center. They’re trying to hit the center so it’s often on the dartboard, it’s where the most dots are, it’s where the most holes are from the darts that have hit there, right. So it’s where the most damage is, but then as you go to the next ring out, there’s less and less damage as you continue to go out in the rings.
Bill Gasiamis 55:14
And the fact that there’s less and less damage there means that the healing happens. And there’s more intact neurons and connections there because there’s less damage there. And as a result of that, those areas come back online quicker, they make new connections, they reroute better, they do a whole bunch of things quicker.
Bill Gasiamis 55:33
And that’s where people get those little 1% 2% 3% gains, that they didn’t realize they could get down the track, or one, two or three years down the track, and that the doctors don’t really pay attention to but those little one and 2% gains, if you pay attention to those, and you add them up over a year, or over 18 months, or every two years, they actually are a lot.
Bill Gasiamis 55:57
And then you notice how far you’ve come rather than how far you have to go. If you’re noticing how far you’ve come, then you’re going to feel better about that in your head in your mindset. And then you’re going to be more encouraged about continuing the journey
Tsgoyna Tanzman 56:12
100% and this is where that life coaching comes in. Right? Wherever you put your focus and your attention that expands right, you can look at how far you have to go, or how far you’ve come, right. When you look at how far you have to go, it seems overwhelming seems impossible seems like you want to get up, we give up.
Tsgoyna Tanzman 56:35
But when you look at how far you’ve come, how much progress you’ve made, that thought of making progress creates that hopeful or curious or determined condition, which then stimulates the various actions that come from determination. Versus when you feel overwhelmed, we tend to spin not do anything give up. But when we feel determined, because we’re seeing and believing that we’ve made progress, then we continue to make progress.
Tsgoyna Tanzman 57:10
And connections. It’s so interesting that you said that because we found out that the connections between neurons are more important than the number of neurons that have been damaged. But it’s that connection. And I think it’s a great metaphor for for recovery all over the place.
Tsgoyna Tanzman 57:28
Because connections outside in human connection, isolation is probably the worst thing that can happen. And it’s a very common thing that can happen because of stroke, particularly if their communication deficits. But we can be isolated. And we need to connect not only with other stroke survivors, loved ones, our connections mean more than anything
Bill Gasiamis 57:57
I wrote about that recently in my book. So and by the way, I love the amount of overlap between your book and my book. My book is still not out yet. But I finished the last chapter just about a few days ago. And the chapter is about building a supportive community. And I talked about in that community, it’s about really bringing people into that community. It’s not, I use the analogy.
Bill Gasiamis 58:23
It’s not like a suburb, or a locality where you buy a place or you rent a place and you go there, and you don’t get to choose who’s around you. And nor should you. When you go there. Everyone who is there is there and you have to work out who they are and you have to navigate that. But a recovery community is people that you choose to bring in. And they only come in if they’re serving your recovery.
Bill Gasiamis 58:46
And I’m not saying that you don’t talk to people who don’t serve your recovery. Of course you do. You don’t separate yourself from the people that you’ve been around, but you bring in people that are going to be part of your recovery team.
Bill Gasiamis 58:58
They can be doctors, occupational therapists, acupuncturists, they could be Reiki healers, they could be a whole bunch of people that you go to, or that are around you, that are motivating you that are helping you that are bringing you a bowl of soup that are doing everything that is about just having an amazing experience when you’re around them.
Bill Gasiamis 59:25
And it may not be specifically stroke-related, but you just feel good when you’re around them. I know that I chose to hang out and spend the majority of my time with people who made me feel like that I was uplifted when I was there. So they were part of my stroke community recovery community even though they didn’t know that they were part of it.
Tsgoyna Tanzman 59:47
100% and I really make a point of saying in there, you know, PPO of positive people only, you’ve you’ve got to kind of connect with the people that have your vision, that share your vision that share your optimism for recovery, and that are of that same genre, but like, it’s very important.
Tsgoyna Tanzman 1:00:13
What you put into your mind what you put into your body, what you put into your energy field, it is the people that you get to lovingly be with or to lovingly dismiss, you know, like, that doesn’t work for you, you know, and that’s fine. You’ve got to find that support community that furthers your support.
Bill Gasiamis 1:00:38
It seems to be what you talk about in Chapter 13. Right? Which is help is not a four-letter word. Learning how, who, and when to ask.
Tsgoyna Tanzman 1:00:48
Yeah, and that’s for caregivers, as well as for survivors, it really is.
Bill Gasiamis 1:00:58
Caregivers, especially, who often go out of their way to make sure that they’re doing everything for the survivor and neglecting themselves.
Tsgoyna Tanzman 1:01:09
And there’s a huge risk for burnout, and premature, you know, problems, physical problems that happen from caregiving.
Bill Gasiamis 1:01:20
Death, often the caregivers, passed before the person that they’re caring for, they’re doing such a great job on them, that they’re not looking after themselves.
Tsgoyna Tanzman 1:01:31
Right. And I’ve always said, you know, you must fill your own tank first before you become that caregiver. And people really struggle with this, like, how do I do that, I don’t have the time, I can’t do that. And it really becomes a mindset shift to, of finding a way to care for themselves, so that they can be a better caregiver, because you are a human being, we are all only human beings.
Tsgoyna Tanzman 1:02:00
And, we’re all subject to being overtired, over-hungry, over-frustrated, right? We have basic human needs. And we must be able to care for ourselves, if we have any hope of trying to care for another person.
Bill Gasiamis 1:02:21
it’s definitely put on your mask first, in the aeroplane, before put on the mask for somebody else, you can’t help anybody if you’re not around to help them. It’s simple as that. Now, one of the things that are really difficult for some people to do after stroke, and because stroke is so varied in the way that it impacts people, and some people have we’ll call it a minor impact from stroke, which I don’t believe there’s such a thing when the brain is impacted, there’s no such thing as a minor.
Bill Gasiamis 1:02:56
But then deficits wise, some people are impacted a lot more dramatically. And, it’s difficult to get them thinking in a way that’s going to support their recovery. So they might be unable to get up and walk around, they may be unable to go back to work, there might be a whole bunch of issues that makes their identity feel completely different to what it was before they started down the stroke journey.
Finding meaning in stroke recovery
Bill Gasiamis 1:03:30
And we often talk about finding meaning, you know, what’s the point of all of this, you know, where’s the meaning in this? You know, what does it mean? And you can understand somebody who’s been seriously impacted by stroke and has a lot of deficits going well, there is a meaning it doesn’t mean anything and going into a negative spin. But I feel like there is a way to even in that situation, find meaning.
Bill Gasiamis 1:03:57
And for me, my version of meaning kind of came from this. I’ve been down this road now for five years, I’ve learned some things I’m going to share them in hopes that somebody who’s going through this is not going to have to struggle the way that I did. And as a result of that. What that did is it allowed the meaning of all the stuff that I’ve been through to emerge and the purpose of my life to emerge. And I had no idea that that was happening.
Bill Gasiamis 1:04:35
And I’ve just spoken about this in my book as well. Because that is part of my hope for people is that they are going to be able to somewhere find meaning. And in order to do that the first thing that you have to do I think you tell me what you feel, I think is you have to do something for somebody else without wanting anything in return. And keep doing that as often as your resources allow you to.
Bill Gasiamis 1:05:08
And then out of nowhere one day, meaning and purpose will emerge. And for me, my meaning is pretty clear. Now, it’s about stroke recovery. It’s about a podcast, it’s about other people and all that type of thing. But it’s become my purpose in life.
Bill Gasiamis 1:05:25
My purpose is to have the biggest database of interviews with stroke survivors and other people who help stroke survivors so that nobody ever has to go through this journey alone ever again. And we, you and all the other people that I’ve had on the podcast are helping me fulfill that. So tell me about your thoughts on meaning and how to help guide people towards meaning and purpose.
Tsgoyna Tanzman 1:05:56
Yeah, I think everybody, as you say, finds their own way to meaning. And I think your discovery of what that was, came from all of your circumstance, not your circumstances, but all of the changes that you made that naturally and spontaneously evolved for you. I’ve seen people so there were I worked with a man who had had a spontaneous carotid artery dissection.
Tsgoyna Tanzman 1:06:31
It was on New Year’s Day. He had spent the morning surfing with his buddies, his wife, and one of his four daughters was on the way to college his eldest daughter that was on the way to college. And he went to go help his mother move a very heavy piece of furniture. And he had this sudden onset of illness that manifested like throwing up and dizziness, and nobody really knew what it was. And he didn’t get any medical help.
Tsgoyna Tanzman 1:07:08
By the time I met this man, he’d already been hospitalized, maybe three weeks. He had the most extreme as far and I’ve seen a lot of stroke patients. He had no usable language whatsoever. He was paralyzed on one side. The sounds that he uttered didn’t even sound like English sounds, they literally sounded alien. But he would look at you. And one gesture he could do, he would put his hand to his heart, and he would close his eyes.
Tsgoyna Tanzman 1:07:48
And you knew that it was a sign of gratitude that he was experiencing well, what became this man’s purpose in life, he’s now 10 years post stroke. He went through lots and lots of therapy, I will tell you one short story about it that was like his immediate purpose in life. And you talk about feeling good for a period of time, there was a program called Life Rolls On. I don’t know if you’ve ever heard of it.
Tsgoyna Tanzman 1:08:19
It was a program that was created by a young surfer who had been surfing he was going he was pro, I believe. And he was in a terrible surfing accident, became quadriplegic. And after he became quadriplegic, his purpose in life was that people would surf no matter what, in any condition, he was going to surf again, and he was going to teach other people to surf, no matter what the condition was. Well, I found out about this program.
Tsgoyna Tanzman 1:08:53
And ironically, you know, like I said, this man’s injury came subsequent to the him surfing that day on New Year’s Day. And we were having a particularly challenging session. I could see he was getting super frustrated. And I remember saying to him, do you want to look at this thing about surfing and in his eyes would like he could understand. He could understand some of the time not all the time.
Tsgoyna Tanzman 1:09:19
Well, anyway, we looked at this program, and I went, do you think you want to try this? And he got really, really excited. I said, Well, okay, we have this small problem. We have to get this part of your skull that is now in your stomach. Because, you know, when I don’t know if you ever went through that, but like, did they put part of your skull in your stomach?
Bill Gasiamis 1:09:42
I have had people who I’ve interviewed who told me that and yeah, it was amazing to hear that. In order to relieve the pressure of the brain, they remove the part of the skull, they store it in the stomach for a period of time and then they take it out of the well it’s actually in the belly fat. And then they remove and put it back. I haven’t heard that. But it’s lovely to hear that thing it’s just amazing.
Tsgoyna Tanzman 1:10:11
So we said, well, this would be really great. We got to get clearance from your doctor. And oh yeah, by the way, we’ve got to get that bone flat back on your head, if you want to go in the water. Right? And it was not very far away. Well talk about having a purpose. Right? By the time that we went to do this, we cleared it with his doctor, he did get his bone flat back on. It required so many people to, imagine getting a half-paralyzed body into a wetsuit.
Tsgoyna Tanzman 1:10:42
That’s no easy feat. Anyway, he got on his surfboard, there were three people in the water with him, getting him to surf, getting him and just joy and elation from having achieved that in the short run. So how does this bring me to purpose and meaning, right? Well, he wasn’t able to go back to work, he was a very smart engineer, he ended up becoming very interested in photography.
Tsgoyna Tanzman 1:11:16
And for him, the purpose and meaning of his life came from photographing his family and his growing family. And that’s where he created his significance and contribution. And everybody’s going to have a different way. A different means another person who had been an architect who could no longer speak and was so frustrated by that started doing paintings, he ended up selling paintings. For a real estate person who was looking for things to stage.
Tsgoyna Tanzman 1:11:59
You know, to stage homes exactly. So I never know what a person’s purpose and meaning is. But I think you touched on something important, I can say that the most successful thrivers, as I call them, have some things in common. And one of those things in common is that they found something bigger than themselves. Something that was more important, whether they called it God, higher power, Allah, Jesus, YeHoVaH, it didn’t matter what it was.
Tsgoyna Tanzman 1:12:37
Even those that were total atheists that believed their doctors were a higher power, finding something that was beyond themselves was important. I think that’s when you’re speaking to talking about doing something for somebody else. It’s believing that there is a purpose beyond you. Right? That was one of them. Finding a sense of humor, finding humor in things, in the most ridiculous things was absolutely a factor in being a thriver.
Tsgoyna Tanzman 1:13:15
Those were definitely two factors. I always call them like my, you know, non-scientific, purely anecdotal features, because we’re always looking at, like, what makes person a successful thriver. And we can connect the dots backwards. And those are two of the most important things.
Bill Gasiamis 1:13:36
I agree. The thing about purpose is it’s not something that you’re going to work out in your head, it’s a heart led thing. You know, you hear about these people who say, Oh, you know, you have to find your purpose. And then they tell you, you’ve got to think about it and you got to work at it, you’re not going to it’s not meant to happen like that you don’t plan for your purpose to come forward.
Bill Gasiamis 1:14:00
But that classic example of taking photos for the family of the growing family for that patient, that guy, he’s doing that for them, as much as he’s doing it for him. He’s doing that for them. He’s taking photos, capturing moments, and giving that as a legacy, something that people can reflect on and look back on, in many years to come and say, Our dad did that or our granddad did that or whoever it was that did that.
Bill Gasiamis 1:14:30
And that’s the thing about it is it’s a reciprocal thing you do for other people you get something back from it, as if I don’t get anything out of interviewing stroke survivors, it’s my therapy session every single episode. And I don’t get to pay for it. You know, people come to me and they tell me their story and we share and I get tons out of what they share. My wife does not want to sit through another 235 conversations about me and my stroke journey.
Bill Gasiamis 1:15:03
I mean, it’s in our lives all day every day. She just doesn’t want to hear it anymore. It’s not her job, right? So that’s what I get about it, that’s the gift that they give me. And then I’m paying that forward to the people who are going to receive that down the track who need that information, who are desperate and do that Google search. And they’re either going to do the Google search and go, I found a podcast, or Oh, my God, I found a book, how about this book, or I found a podcast about a book and it’s maybe you and me. And that’s the thing, right?
Bill Gasiamis 1:15:36
I get a lot out of something about following my path and my purpose, and hopefully the person on the other end is getting something out of it. And my purpose wasn’t to do this at the beginning. At the beginning, my purpose was to get back on my feet. So purpose changes and shifts, right. And it’s broad. It’s not just one thing, and there’s, oh, well, this is my only purpose, I’m not going to do anything else.
Bill Gasiamis 1:16:03
No, there’s many different purposes involved in that purpose. If I’m doing this and I’m happy, then my family life is better. If I’m doing this and I’m healing, then my recovery is better. That means that my wife is impacted better, that means that my children are impacted better, that means that my mom and dad are impacted better.
Bill Gasiamis 1:16:21
So if we’re going around, if we’re going towards a purpose, it’s not just so you know, it’s not a selfish thing. Everybody benefits around you, if you’re following your purpose, or trying to discover your purpose.
Tsgoyna Tanzman 1:16:40
100%, and that is so true what I say about my patients, too, is that I learn more from them, right? I get from them. In working with those people, I learned more about resilience than I could ever learn. So you’re 100%, right that as you fulfill your purpose, it affects the next person and the next person, the next person, everybody benefits from you taking care of yourself.
Bill Gasiamis 1:17:15
Yeah. And I’m going to move on from purpose in a moment, but you could tell it’s a passion of mine, to live it to talk it to encourage people to go down there. The thing about purpose is, it could be as simple as even if your purpose is just to be a great example, to somebody else about how you go about tackling such a dramatic, life-changing situation.
Bill Gasiamis 1:17:40
So that in case one of your loved ones has to go through that in the future, when you’re no longer around, they’ve got some kind of a formula, or some kind of an example that they can follow to help them overcome whatever it is that they might go through.
Bill Gasiamis 1:17:56
It’s better than being the version of a stroke survivor, who just gives up throws the hand in the air and leaves that as the example as to how to go about dealing with a serious issue from a disease or, or a condition like stroke. This has been a beautiful conversation, by the way as we continue to chat about one more thing about the book.
The importance of forgiveness and acceptance in stroke recovery
Bill Gasiamis 1:18:24
And come to wrap this up. Chapter 29. And there seems to be a lot of chapters, maybe you can tell me about that in a minute. Chapter 29 is about forgiveness and acceptance. Tell me a little bit about your thoughts on forgiveness and acceptance. Who are we forgiving? What are we accepting?
Tsgoyna Tanzman 1:18:44
Yeah. Well, there’s a lot about forgiveness with regard to stroke, right? Where we start to sometimes were angry at I know, I worked with a man who was angry at the physician who caused the stroke, right when he went in for a surgical procedure. And he stroked out his thought was the surgeon cause this, right? That can certainly happen when you’re having a brain surgery and something goes a muck.
Tsgoyna Tanzman 1:19:17
You know, I don’t know if you’ve ever read the book, Gray Matters. Dr. Levy, brilliant neurosurgeon who worked in the brain and I really looked at his work too, because it was so important. When I first went to hear him speak. He described himself as being the kind of guy that wanted to get warm and fuzzy with his patients as long as they were anesthetized behind a scalpel.
Tsgoyna Tanzman 1:19:46
That was as close as he wanted to get. And he would perform these very high risk surgeries of removing aneurysms and all that kind of thing, and occasionally, he had a bad outcome. And his was all about praying with patients before but forgiveness is there’s so much a patient I’ve heard of, I shouldn’t have lived this way, I should have done something different.
Tsgoyna Tanzman 1:20:16
There’s forgiveness of themself for lifestyle, there’s forgiveness of other people, but when I heard the words taken apart, forgive, as for give, how can you be for giving yourself love? Can you be for giving yourself? Appreciation?
Bill Gasiamis 1:20:42
Tsgoyna Tanzman 1:20:45
I mean, that just put it in a context for me, that still gives me the goosebumps. And understanding, you know, they say that, anger or harboring resentment towards somebody is like drinking poison and hoping the other person will die.
Tsgoyna Tanzman 1:21:03
And there is a degree of peace that comes, especially when we are for giving ourself a new beginning, a new start, the acceptance is a challenge, it doesn’t mean we like it doesn’t mean anybody’s going to choose yep, I’m gonna choose to have a stroke, that’s a great thing. You know, I didn’t put that on my to do list. And I didn’t want that to happen.
Tsgoyna Tanzman 1:21:37
And here this situation is when we come to terms and everybody has to do it in their own time, and in their own way. But when there’s the acceptance of this is where I am right now, doesn’t mean that I’ll be there a year from now or five years from now. But where I am, and to literally except, to move all the way to love, appreciate, what can I appreciate about myself today, today, just as I am. That’s really powerful. Because that’s where we move into that mindset.
Tsgoyna Tanzman 1:22:29
When we resist that, when we absolutely don’t accept it, and we resist it, our resistance grows greater, our stress level goes greater. And any ability for us to really embrace our body’s natural resilience and facility to improve is stifled is dampened. And that is where we do have some power. And it may require working with a professional that can help you get to that place. I’m not saying that it’s an easy place to get to.
Tsgoyna Tanzman 1:23:12
But even the self help that you can get from putting your thoughts down on paper and looking at them out of your head is a place to evaluate them in a better way. Recognizing that any of those thoughts are thoughts that there are people that have had strokes that may have a different like a person like you right?
Tsgoyna Tanzman 1:23:44
At this stage of your recovery again, not that you would choose it. But where has this come in your life? You have found a purpose that is so powerful for you. That had you not had a stroke you wouldn’t be where you are today.
The stroke got me out of my head
Bill Gasiamis 1:24:00
No way. Yeah, I would not be and I hate to think what kind of person I would have been because the path I was going to wasn’t a fun one. I was cranky, I was working too many hours. I had too many negative thoughts. I didn’t believe in myself. I didn’t think that anything was possible. I had never done any personal development. I thought that I had all the answers and nobody else knew anything. I was a great guy to be around.
Bill Gasiamis 1:24:37
But I was my own worst enemy like so terribly bad to myself. But you wouldn’t guess it by being around me or seeing me or hearing me interact with other people. I was just the hardest person on myself and I wasn’t an encouraging of myself. And what the stroke did for me it is it got me out of my head. So I had a really overthinking over negative head and my stroke meant that the head switched off for a few months.
Bill Gasiamis 1:25:12
And that was what allowed my heart to come forward and express itself. And then it allowed me to hone into my heart’s desires. And then to follow them, because my head wasn’t telling me not to. And then that made me find those amazing people and make them part of my community. And then they made me follow and fall into personal development courses, and discover what I’m capable of.
Bill Gasiamis 1:25:47
And then, of course, overcoming the not being able to walk again, and learning how to walk again, was a massive, a massive personal development opportunity that I did on my own, but with obviously, the help of all the therapists, and it just took my growth, my personal growth to the next level, so it just taught me things that it was impossible to learn any other way. And I’m glad that it came at 37 and not 57, because at least the 37.
Bill Gasiamis 1:26:30
It was well overdue, I was well overdue from being in that position of stuck in a stuck mindset. And I needed to move into a growth mindset. And that’s kind of what has continued to happen. I didn’t know that I was in a growth mindset, by the way, and I didn’t know that it was in a stuck mindset. I know that now, because I’ve read a book about it, you know. But it’s what happened, and I can reflect on it really lovely now.
Bill Gasiamis 1:27:03
Yeah, I would hate to think where I would have been, I think I still would have been successful, I still think I would have been a good family man and I would have had all of that stuff. But I feel like there would have been a lot more, potentially a lot more tension, a lot more stress, a lot more unnecessary kind of stuff that doesn’t support happiness, I think is where I would have been. But you wouldn’t know it if you met me on the street.
Tsgoyna Tanzman 1:27:39
Yeah, it’s remarkable to see who you became, what was available to you. What creativity, what wisdom, what genius would come from this, and you’re not the only person I’ve ever heard say, my stroke turned out to be a blessing. You know, I hear that time after time.
Tsgoyna Tanzman 1:28:05
And that’s why it is just so remarkable to me to listen to each person’s story about how and what they learned about themselves, how badass they learn, they became, how resilient. Like really, it’s like, how loved they were so many of those things have occurred to people that I just continued to marvel at each individual story is so remarkable.
Bill Gasiamis 1:28:36
Yeah. Thank you so much for reaching out being on the podcast.
Tsgoyna Tanzman 1:28:40
Oh, such a pleasure Bill, like amazing. And thank you too, for sharing your journey, but also this beautiful new purpose that you have developed over these years and just keeps expanding. And I think I can find somebody that help you talk about sex.
Bill Gasiamis 1:29:00
Please, I want to talk about sex. Get them on, let me know.
Tsgoyna Tanzman 1:29:03
Okay. Take care, thank you.
Bill Gasiamis 1:29:06
Thanks so much. Thanks for joining us on today’s episode. I hope you enjoyed that particular conversation as much as I did, it was really lovely to hear the approach that somebody in the position of Tsgoyna has taken and the benefits that her patients and clients have received over the years because of her amazing way to go about supporting people on the road to recovery.
Bill Gasiamis 1:29:39
Now to learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes If you’d like to support this podcast, the best way to do it the way that I would love you to do it the way that I would really really, really appreciate get you to do it is to go and leave a five-star review on your particular podcast app.
Bill Gasiamis 1:30:06
Whether it’s the Spotify app or the Apple podcasts app or any other app that you listen to your podcasts, that would be fantastic. If you are watching on YouTube, please leave a comment below the video, just two words is fine. Anything to make the algorithm push the episode to more people, way more people need to listen to this episode. And the algorithm won’t do that unless there is interaction with the episode.
Bill Gasiamis 1:30:34
So if you’re on YouTube, please hit the like button. Subscribe. And definitely leave a comment. I answer all comments, whether you have questions, whatever it is, just please let me know what you think about the episode I would love to hear from you. Sharing the show with family and friends on social media will make it possible for people who may need this type of content as well to find it easier.
Bill Gasiamis 1:30:58
And that’s going to make a massive difference in their recovery. It really does. This is exactly what people who are recovering from stroke need just like you. Hopefully you can share this and let other stroke survivors know about it. Now, if you are a stroke survivor with a story to share about your experience, just come and join me on the show. The interviews are not scripted, you don’t have to plan for them.
Bill Gasiamis 1:31:21
All you need to do to qualify as best stroke survivor you need to be a caregiver for a stroke survivor or you need to be somebody who works to help stroke survivors overcome whatever it is that they’re challenged with. So go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive your request, I’ll respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
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 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 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. 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.
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.
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. 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.