Shamarah Gianetto was 46 and a mom of a 5-year-old when she experienced a Pontine Ischemic Stroke. Listen to her story here.
Highlights:
01:06 Introduction
02:24 The initial pontine ischemic stroke Symptoms
14:55 What’s changed since the Pontine Ischemic stroke?
24:28 The physical, mental, and emotional recovery
29:33 Keeping track of your recovery
34:27 The Benefits of Yoga for Stroke Recovery
44:27 Dealing with mental fatigue
51:32 A Recovery mindset is a gift
1:04:51 The importance of time management
1:10:51 Becoming more observant and curious
Transcript:
Shamarah Giannetto 00:00
And of course, I wasn’t able to parent the same. I’m still not. I haven’t been working I’m set to go back in June. They gave me six months, and again physical recovery has been great physical therapists were wonderful to work with for me, it was kind of a lifesaver and kept me out of depression because I was working toward something. But now it’s the mental part and the brain is, as you know, I’ve listened to your podcast. It’s much slower to recover. And so it’s kind of just, I’m learning to be patient very much against my will.
Intro 00:54
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Shamarah Giannetto
Bill Gasiamis 01:06
Hello, and welcome to episode 255 of the Recovery After Stroke podcast. My guest today is Shamarah Gianneto, who experienced a pontine ischemic stroke as a mum of a five-year-old when she was 46 years old. Shamarah Gianneto welcome to the podcast.
Shamarah Giannetto 01:25
Thank you.
Bill Gasiamis 01:26
Thank you for being here. You are a trooper, thank you for getting up so early. After I’ve mucked up the times, and got you here at the crack of dawn. I know it’s a test. I’m not attempting to test you. But thank you for taking up the challenge.
Shamarah Giannetto 01:43
It is a challenge. I don’t think I’ve been this early since I had a baby.
Bill Gasiamis 01:48
Fair enough. Tell me a little bit about what happened to you.
Shamarah Giannetto 01:54
In December of 2023, December 14, I was at work and was chatting with my office mates. And one of my office mates is an 80s Rock Band. And so we were talking about new songs that she wants to cover. And I was playing a song and kind of bobbing my head like this when I felt a pop in the back of my neck.
The initial pontine ischemic stroke Symptoms
Shamarah Giannetto 02:24
And I had been deadlifting previous days. And so I thought oh my gosh, it’s a neck injury from lifting weights. But my left side immediately went numb. I stood up, I was dizzy, and kind of confused, and my voice changed right away. And I thought something was wrong.
Shamarah Giannetto 02:48
And so I called my husband who was working close by. And he took me to the ER and they did a CAT scan and they did an evaluation. And while I was sitting there I was slowly losing speech it kind of felt like a migraine and I get migraines.
Shamarah Giannetto 03:08
And so I thought like is this a migraine is this you know, something like that? Did a CAT scan didn’t show anything? And so she thought, Oh, you have a pinched nerve. And so she gave me some shots for steroids to reduce swelling, and some painkillers and sent me home.
Shamarah Giannetto 03:29
Throughout the evening, I lost more and more speech, it was becoming more slurred. My left side was completely useless. I was dragging it around. And I wasn’t able to sleep that night. So I stayed up all night just kind of googling my symptoms. And none of my symptoms matched with a pinched nerve they all matched with stroke.
Shamarah Giannetto 03:54
And so I called my sister the next morning who was a nurse, and she heard my voice and immediately could tell something was wrong. And she said you’re having a stroke, you need to go back to the ER. So I did. This time when I walked in, I said I thought I was having a stroke and I listed all of my stroke symptoms, and they initiated the stroke protocol.
Shamarah Giannetto 04:20
And I got an MRI and they could see that I was having an ischemic stroke in the pontine region of my brain. So then I was admitted. And they gave me all the blood thinners and all the things and started that process. So yeah, I had a stroke.
Bill Gasiamis 04:38
What was the pop?
Shamarah Giannetto 04:39
The pop. So when I was doing my deadlift, and I’m not like I’m not a gym rat, I’m not that person. I was just trying to lift weights. And it was part of a routine I was doing. The pop was I had a bulge just on my C4 and C5 that something happened, and I haven’t yet been able to consult with a neurologist to find out if that’s what, you know, maybe caused the clot to happen. But that was the pop and because there was the pain and that injury happening at the same time, it was very difficult to get that diagnosis the first time around.
Bill Gasiamis 05:33
Yeah. So you’re just bobbing along during the music.
Shamarah Giannetto 05:39
Yeah. And listening to music, bobbing my head, had no previous indications that I had any health issues. I’m 46. And, you know, fairly healthy probably could lose 10 pounds like everybody else that I know. But, you know, I’m active. I was mountain biking two to three days a week working out. Doing not deadlifts all the time, but doing weights and higher intensity training, is that what it’s called? HIT?
Bill Gasiamis 06:17
How old are the kids?
Shamarah Giannetto 06:19
I have a six-year-old. She was five at the time.
Bill Gasiamis 06:23
Yeah. I’m just, you know, once in a while I just try and get my head around the whole situation that happens, you know, out of nowhere. I’ve had people come on the podcast because they’ve cracked the neck and caused a tear in one of their arteries, and it’s caused the stroke.
Bill Gasiamis 06:43
I know a person I think, sneezed. I mean, just some bizarre, strange scenarios, and you’re just sitting there bobbing your head, and you have a result like that. And it’s just so many ways. There are too many ways for people to have strokes, let me tell you. So how did you get help? What happened with the people that were around you? What did they do?
Shamarah Giannetto 07:17
So half of my office was away at lunch. It was me and another office mate who was in the office. And I remember just telling her something was wrong. And she said, what do you need? And, I said I needed to call my husband.
Shamarah Giannetto 07:31
So I did, and again, what I was noticing was, you know, I’ve had migraines since I was 15. I know what a migraine feels like. And I think I kept trying to tell myself Oh, this is you know, pretty migraine coming in. Because it was like this tingly feeling on my left side. And my speech was weird, which has happened before when I’ve had migraines.
Shamarah Giannetto 07:56
But I’ve never had it concentrated so much on one side. And so when I talked to my husband I was kind of telling him, you know what was going on he said, I’m gonna come to get you and I’ll take you to the ER. But really, it was it kind of happened all within 10 minutes. And then he was there five minutes later, and I was going to the ER, so it all happened very quickly.
Bill Gasiamis 08:22
Can I ask a silly question? Why did you feel the need to call your husband and not an ambulance?
Shamarah Giannetto 08:29
I didn’t want to pay for an ambulance.
Bill Gasiamis 08:32
Okay, that’s legit.
Shamarah Giannetto 08:35
Yeah, and I work on a college campus, the community college campus and I didn’t know if they’d be able to find me, you know, so it was kind of, you know, my husband knows exactly where to go. I knew I couldn’t drive myself. I was already feeling like, I should not be driving.
Bill Gasiamis 08:51
And the people that were with you did they argue with the train and insist on getting an ambulance did they just go with what you were saying?
Shamarah Giannetto 08:59
I don’t think they knew what was going on. Because I was in my cubicle. They were in theirs as I was kind of going through all the motions and I decided within five minutes to call my husband right away. And then he was on his way so then the hospital that we have is a stroke recovery.
Shamarah Giannetto 09:21
It’s, you know, that’s kind of their specialty. Which is I’ve been working through your stroke center and I was at home I’m having a stroke. But you know, things can be misdiagnosed and I understand that so yeah, right. But we’re, we’re within you know, about five minutes from the hospital so I was logistically close and so I knew once I had arrived, I would be fine.
Bill Gasiamis 09:52
Or they don’t want to make you feel bad because I made that decision twice. I had two brain hemorrhages and both times. The first time I didn’t go to the hospital for seven days. The second time, I drove past the hospital, to go home to tell my wife to take me to hospital. So I’m not saying it to make you feel bad.
Shamarah Giannetto 10:12
I don’t know. I’ve never had one. I do have insurance through my employer. But I believe it’s around the same.
Bill Gasiamis 10:12
I’m just curious about the thinking that goes on in the thing that you said about the cost. That’s legitimate because I hear it a lot. So because I’m in Australia I’m not sure what an ambulance ride costs in the United States. For us, I think it’s about $3,000 or $4,000. If you haven’t got insurance, what does it cost for you guys to have any idea?
Bill Gasiamis 10:45
So with the insurance through your employer, does that then cover you for the ambulance ride? Would it normally cover you?
Shamarah Giannetto 10:54
I think you have a copay for an insurance ride. And I’m not sure what it is. It depends on your level of insurance. We have tiers that you can pay for. And so I think I know that like when I go to the ER, I have a $250 minimum copay that I have to pay when I go in.
Bill Gasiamis 11:17
Yeah, so I just did a Google search while you were talking about the cost of a hospital ride in the United States. And I’ve got it listed here at about an average of about $1,300. So I can see why some people would try and avoid getting a bill because then it’s expensive to be in hospital as well.
Shamarah Giannetto 11:41
Yeah. And what’s interesting, the next day when I called my sister, she was working in a hospital. And she answered my call because I rarely call her while she’s at work. And she said You need to get an ambulance. And then she called me back in two minutes and said, I’m going to call an ambulance for you.
Shamarah Giannetto 12:02
And I said, no, you know, my husband, Mark is on his way. He’s taking me right now. And she said, Okay, if he’s not going to call you again, in two minutes, if he’s not there, I’m calling you an ambulance, like Time is of the essence was what she just kept saying.
Shamarah Giannetto 12:17
And so even when we were going through the ER process, and they were admitted me the second day, as soon as I said, stroke, you know, I wasn’t putting triage, I was immediately brought back, they had a, you know, doctors on me, they, they took me to the MRI, and didn’t know MRI right away. And then about 30 minutes later, it was confirmed I was having a stroke. So those are the magic words, if anybody thinks they’re having a stroke, when you say, I think I’m having a stroke, and you start listing some of the symptoms, you will not have to wait two hours.
Bill Gasiamis 12:59
Yeah, you get the red carpet treatment, I did the same thing. The second blade, I went into the hospital, and I said to them, I said, why I didn’t go in, they collapsed. So that was I got a and then a collapsed black. They didn’t know who I was, or anything. The third time I went to the ER. And I said I’m having a stroke.
Bill Gasiamis 13:26
And they said to me yeah right, what are you talking about? I said I was having a stroke, and they said, give us your information, your name, and all that. I said there’s no time for that. Just get me straight in. And they’re going, no, hang on a sec, just give us all your details. We’ll bring you up on the system.
Bill Gasiamis 13:42
They were trying to get my history up so they could diagnose who I was or what I was talking about and what the details were. And then, of course, I went into CT. And then it was confirmed that I was having another bleed. But yeah, it was the red carpet treatment. And usually, it is, you know, waiting for 8 hours or 10 hours or whatever it takes.
Bill Gasiamis 14:14
And there’s probably no worse, and better place to wait because if you’re in hospital, at least you’re waiting in hospital. And that’s probably one of the better places to be. But then at the same time, it’s, you know, you’re so close and you’re waiting and then that’s sometimes also missed, while they’re triaging you and trying to get you the help and then trying to help all these other people. Look, I wouldn’t want to be in the medical system. I love what they do, but I just wouldn’t want to be involved in that. It’s just too much pressure as far as I’m concerned.
Shamarah Giannetto 14:49
Especially after the pandemic, I think a lot of people are just at their limit.
What’s changed since the Pontine Ischemic stroke
Bill Gasiamis 14:55
Yeah, absolutely. So what’s changed for you since you had the stroke? So I know five o’clock in the morning wake-up times are not ideal. And thank you for doing that. But what’s, what’s changed?
Shamarah Giannetto 15:15
I feel like it’s kind of like, where do I start? When I was in recovery, you know, I couldn’t move my left side, my speech took a, it took a while, I mean, I feel so lucky, because I’m sitting here talking to you. And, you know, I don’t look like I’ve had a stroke.
Shamarah Giannetto 15:40
So a lot of what’s happened in the last, you know, four and a half months, this physical recovery has gone well, mentally, there’s still a lot happening. And so I would say, the most significant thing that changed for me was I went from being fully employed running a department, community college, work, you know, working being a mom being a wife being very active to being in a bed, and focusing on just doing this with my fingers for you know, every day and trying to wiggle my toes.
Shamarah Giannetto 16:22
And I did when, when I had my stroke, the very next day, I was doing physical therapy, the physical therapists come in and, and I was in a recovery room with three, the two other stroke survivors who had much more severe issues going on, I did. And so the physical therapists were coming in and just moving their bodies, you know, like, manually, I was able to get up and use a walker to walk up and down the hall.
Shamarah Giannetto 17:01
And they had a physical therapist, an occupational therapist, and a speech therapist come in and evaluate me the very next day. And everybody kept telling me, you know, when, when they were coming in, why are you here? Or they kept asking, Why are you here. And, you know, so I had to repeat, I had a stroke, and a stroke and a stroke. And that was helpful because it kind of helps you accept what’s happened to you like, on the surface, at least, you know, for the time being.
Shamarah Giannetto 17:36
But that was all new to me, I had never had any kind of physical limitation, I’ve broken my elbow, I’ve broken my foot, you know, I’ve, I’ve done things. But never had that kind of, you know, not being able to live my arm. And so I was a special education teacher before I moved to the community college world. And I just started observing, you know, what’s different now? Who am I now?
Shamarah Giannetto 18:08
Like, what do I want to go back to? And the physical therapist kept talking about, you know, what was your baseline? What were you doing? What was your average life? You know, what was your life like before you had the stroke? And that was going to be their goal to get me back to that if they could. And so that my focus shifted. And of course, I wasn’t able to parent the same. I’m still not. And I’m, I haven’t been working, I’m set to go back in June.
Shamarah Giannetto 18:41
They gave me six months. And then, again, physical recovery has been great physical therapists were wonderful to work with me, for me, it was kind of a lifesaver. kept me out of depression, because I was working toward something. But now it’s the mental part and the brain is, as you know, I’ve listened to your podcast. It’s much slower to recover. And so it’s kind of just, I’m learning to be patient very much against my will.
Intro 19:19
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. How long will it take to recover? Will I 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, so you probably don’t know what questions to ask.
Intro 19:43
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.”
Intro 20:03
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, recoverafterstroke.com and download the guide, it’s free.
Shamarah Giannetto 20:22
You know, with myself, and one of the doctors that the acute rehab center was describing to me the fatigue I was going to fill, he was trying to sort of prepare me for it. And he said it’s going to be unlike anything you felt. And it’s gonna come out of nowhere, you’re gonna be humming along feeling okay? And boom, you’re gonna hit a wall.
Shamarah Giannetto 20:45
And he was exactly right, and he said, You know, it’s kind of like when you’re pregnant, and you’re building, all of your energy is going into building this baby. And so I said, Oh, I’m my baby. And he said, yes, you’re your baby now. And you have to kind of treat yourself like that, like you, your brain is going to be re-rebuilding and reconnecting and you just have to go with it. And I’ve never been a person who can go with it. And so I’m learning to go with it.
Bill Gasiamis 21:19
You’ve got a pretty good grasp of the whole situation, and you’ve got a good understanding of where you’re at, and what needed to change. And they’re really good things because you’ve, you’ve, you’ve your identity shifted, and it’s only been early, it’s early days in the shifting of your identity. So you can’t expect that to kind of just flick the switch and go to this new version of your patient, and all these things, right?
Bill Gasiamis 21:48
And it’s not that you’re not patient, it’s that you’re, you’re re-evaluating your life and how things are. And what your thinking is, is, if this thing wasn’t like this, and if it stops being like this, then I can just go back to what I was doing before I can go back to life. And wouldn’t it be good if that wasn’t there anymore, because that meant that would mean that I’m okay? And I’m just back to regular life.
Bill Gasiamis 22:15
And all I got to do was worry about raising my, child, and then back to go back to work and run my department. And then if that just went away, that means I can go back and do all these things. And the thing about it is it never goes away. Now, the condition improves the fatigue decreases emotional resilience, and mental resilience improves with work. The physical recovery also continues to improve.
Bill Gasiamis 22:48
And, and I’m talking generally now so that anyone who’s listening regardless of your deficit levels in between, you know, six months post-stroke, you reflect. So if you get beyond, say, the five or six-year mark, and you reflect, many, many, most people will report positive results in that period, doesn’t matter what the deficits are, like, they come to terms with things differently, they find new ways to get around things, they adjust.
Bill Gasiamis 23:21
They find, you know, new things that they occupy their time with, and they find new hobbies and new friends and they heal emotionally, you know, so there’s always some kind of an improvement happening moving forward. So where you’re at is you’re at that acute phase, you’ve had a stroke, and it’s like, you just broke your leg. It’s, it’s just like that. I mean, it’s not. It’s not any further beyond that, because what six months is, is just like, I mean, it’s not even the tip of the iceberg.
Bill Gasiamis 23:55
It’s just like, you know, it’s just like, the first couple of drops that happened on top of the iceberg, you know, and it’s like, there’s the rest of it. And I don’t say that to make it sound daunting. Why I say that is because what I’d like people to do is be kind to themselves and give themselves time to heal. This is a moment for you to heal. So you’ve had 46 years, or wonderful years, whatever they’ve been. And what I’d like to say to you is now and this is like a very eloquent way of saying it.
The physical, mental, and emotional recovery
Bill Gasiamis 24:28
Six months is like pissing in the ocean. I mean, it’s not going to make a difference. But this is where you now work on yourself. That stroke is a three-pronged approach. You’ve got the physical recovery, you’ve got the mental recovery, and you’ve got the emotional recovery. And beneath that, there might be some things that you’ll pick up in your physical that you know make up that recovery hole for you and then the in the emotional and might be a whole bunch of things.
Bill Gasiamis 24:57
For me the emotional side was apologizing to a ton of people in case I kicked the bucket. It was making things right with my wife, my children, my brother, and my father, all those people, you know, that mattered who I wasn’t, in a bad relationship with, I just felt like, I could be doing better in that space.
Bill Gasiamis 25:19
So I made a point of making that stuff better, then in the emotional recovery is also how I’m responding to the thing that happened to me emotionally, you know, how do I feel about it? What kind of work do I need to do to understand and allow my emotions to express themselves and then not make a negative meaning about my emotions, what does it mean for a man to cry?
Bill Gasiamis 25:46
You know, a 37-year-old man who doesn’t show emotions, you know, what does it mean for that to happen? And, how can I reframe that, so I can start feeling like this could be a good opportunity to teach people to lead people to show them, you know, how you approach recovery, you know, to be a good example for my kids, and for all the dumb men that I know and love that hang around with me, but just not able to do emotional stuff, you know, and always hold it in and bottle it in.
Bill Gasiamis 26:19
And then with the mental recovery, that’s the only thing that I had that I was good at because I had started counseling when I was 25. So by the time I got to 37, I was 12 years in, and then I continued counseling. So what that did, was it gave me a really good platform, to think correctly, to have a good way to think about things that were serving me, and not causing distress and harm.
Bill Gasiamis 26:47
So instead of thinking, Oh my God, my lifesaver, I didn’t think that I had a mindset that was about, oh my god, what can I do to take control in this situation where there’s no control, sort of taught, technically outsource all that control to medical professionals to help you to heal you to recover you and all they’d send you home. And it was like, okay, so what can I do, to take the burden off them, but also to feel like I’ve got a little bit of control in the matter.
Bill Gasiamis 27:14
And if I’m not improving it less, I’m not making matters worse. You know, so it’s the gift that I would love to give people, those things that I mentioned, would be the gift that I would love to give people is say to them, you know, just give yourself the ability to just feel like this is an opportunity to learn and ask yourself that question.
Bill Gasiamis 27:43
What can this moment teach me? What can I learn from this? And how can I grow from it? Even though it’s hard and terrible. So with regards to your mental health, were you somebody who had mental health challenges before the stroke? Or it’s something different now? How are you experiencing it?
Shamarah Giannetto 28:03
I think it’s gonna sound weird, but I feel like I was very well prepared for this. Yeah, it’s weird. If, this was gonna happen at any moment in my life, now’s the time. I would say my mental health has always been I am a pretty positive, optimistic person. I have had challenges, and I did therapy a few years ago, I did EMDR therapy, which is a form of therapy that they do a lot for people who have PTSD.
Shamarah Giannetto 28:40
So it’s Eye Movement Desensitization and Reprocessing therapy. So I did some intensive EMDR for about, I think, a month. Um, and it’s the kind of therapy where you kind of have a couple of things that you want to work through, and then you’re done. So you kind of identify these moments in your life that you want to work through, and you go back and you work through them.
Shamarah Giannetto 29:10
And then it’s not talk therapy, it’s very, like goal-driven. And that’s the kind of therapy I like. So I am doing well, I did reach out to a therapist after I graduated from physical therapy, and I thought, Okay, now it’s time to start working on this again. And we’re doing more coaching.
Keeping track of your recovery after a Pontine Ischemic Stroke
Shamarah Giannetto 29:33
So it’s very forward-thinking. And, I like that approach because really, that’s what I’m trying to do. I am in that transitional phase that you’re referring to earlier where I’ve accepted that this has happened. I feel like from the day that I got home.
Shamarah Giannetto 29:58
My family really, I’ve always been a journaler they bought me this notebook. And I just kind of started writing in it, you know, like, what was going on what my fears were, what my goals were. And what’s interesting is you can see my handwriting from like, the beginning.
Shamarah Giannetto 30:17
And even though my left side was affected, and I’m right-handed, the writing is different than it’s like, I’ve even seen an improvement in my writing. But just to kind of track, you know, like, what was going on then. And this turned into a gratitude journal because I was feeling, you know as you said, a moment, I’m almost five months into recovery.
Shamarah Giannetto 30:44
But I was feeling frustrated with how slow things were going. And so I made the executive decision to write down five things I was grateful for every day, and just really work on it. And to come from, into recovery from a place of gratitude, and which, you know, is easy on some days and difficult on other days.
Shamarah Giannetto 31:13
Let’s so helpful to do, because, you know, even just being grateful for like, it’s sunny outside and can go walk, you know, I can go walk to the end of the driveway and back. I can do these things. And then can you sleep for two hours, because I’m exhausted from that.
Shamarah Giannetto 31:31
But, I do think that doing that EMDR therapy, kind of wipes the slate clean for dealing with this. Yeah, and feelings that I had around this. So I, I do think that’s a really important part. And when I found your podcast, I was kind of in this place. I was three months into recovery.
Shamarah Giannetto 32:02
It’s been hard for me to get doctor’s appointments. I still haven’t met with a neurologist, I haven’t met with a cardiologist. My neurology appointment has been rescheduled three times. And it’s set to happen next week. We’ll see if that happens. I hope it does.
Shamarah Giannetto 32:21
But you know, just feel like, I’m not getting the answers. I don’t know why this happened. I’m supposed to go back to work. And they still don’t even know how to treat me. I don’t know if I’ll ever get off blood thinners.
Shamarah Giannetto 32:35
I don’t know if I’ll ever get off these meds I went from taking zero meds to taking like six. I don’t like that. But you know, that’s keeping me alive. And I’m grateful for it. So maybe, you know, because I don’t know, this could be a cryptogenic stroke. It could be there could be no known cause.
Shamarah Giannetto 32:53
Or maybe there was a correlation with the, you know, popping and, you know, so but we just I don’t know. And I’ve had to become comfortable with living with that. Not knowing, which is difficult. You know, we’re so used to having all the answers.
Shamarah Giannetto 33:13
And when you don’t have the answers, you kind of it’s a struggle, you know. And I think, for me when I was in the early stages of recovery, and I’m probably still in the early stages of recovery compared to somebody who’s the, you know, 12 years out. But I remember the physical therapist thing.
Shamarah Giannetto 33:38
Because I was asking, What can I do, you know, like, what can I do? And they said, you should try yoga, you know, just do some really basic poses, on all fours, just lift one arm and lift the other arm and, you know, do load bearing things to just reconnect your, you know, neurons to your body.
Shamarah Giannetto 34:01
Which is a really I know, that’s probably not the right way to say it, but it’s close enough. And I do think, that that approach of just kind of observing and not judging has been helpful for me. Just observing, observing, wow, this, you know, this is harder for me to do today.
The Benefits of Yoga for pontine ischemic stroke recovery
Shamarah Giannetto 34:27
And then another day, Wow, I did that I did a full downward dog without kind of tipping over. And so I’ve been doing that several days a week. And so when you interviewed Rachel I heard that podcast with the stroke recovery yoga.
Shamarah Giannetto 34:45
I was excited because that was what was working for me and I felt like you know, this is how come nobody’s talking about this. This is wonderful.
Shamarah Giannetto 34:55
And because it does help with somebody like me who’s been used to kind of more active activities like mountain biking and kickboxing and, you know, weightlifting, to go to yoga. That is not me. But it is now. And I’m grateful for it because I think it’s helped me.
Bill Gasiamis 35:16
Did you reach out to Rachel?
Shamarah Giannetto 35:18
I did. She and I are doing a chair session tomorrow, I think.
Bill Gasiamis 35:23
Oh my gosh, that’s so fantastic to hear. I’m so glad you reached out. So yoga for stroke recovery. That was episode 249, Rachel Jarmusz. And she was hoping that people would reach out to her. So I hope that more people are other than just you, that’d be great. She’s a stroke survivor.
Bill Gasiamis 35:47
So she gets it. She knows exactly what we’re going through. And, interestingly, you mentioned yoga because I tried yoga as well. And I got a little bit disheartened by it because I’m very function functioning. But the yoga reminded me of where my deficits were.
Bill Gasiamis 36:09
And because it wasn’t being run by somebody, like Rachel, I couldn’t integrate myself into that class and feel like I was going to kind of get a lot out of it, you know, it was being run by amazing, brilliant young, 20-year-old girls, who I’ll have to bid for the fact that they’re up there doing that kind of stuff, but it just wasn’t going to be for me, you know.
Bill Gasiamis 36:37
I need to find the right kind of space, and there isn’t one around where I live. So I kind of let it go. But I did see the benefit of all I also did in the interview, which I did with a NAT Baniel. Who was a therapist who doesn’t do yoga, but what she does is put a lot of people with neurological conditions on the ground.
Bill Gasiamis 37:05
And she makes them for lack of a better word, roll around and get used to feeling the ground under their body so that they can go back to kind of retraining the brain and the sensory neurons and all the neurons to connect to the body like you described earlier.
Bill Gasiamis 37:31
And she has a great approach because it’s, it’s founded in kind of back to basics kind of stuff, where you don’t get somebody who can’t walk after brain surgery up on their feet to walk, what you do is you get them on the ground.
Bill Gasiamis 37:50
And you teach them all the skills so that they can engage every muscle the way that in engaged, you know when they want a baby and then slowly get them up and you roll them and she manipulates them in a very gentle way. So it’s yoga makes complete sense to me when I hear about it.
Bill Gasiamis 38:09
So it’s good that you can find another way to be physical in this gentle way, which is also therapeutic to the body. And I mentioned it’s therapeutic to the mind, because it’s a kind of a calm, relaxing, kind of mid, you know, practice.
Bill Gasiamis 38:35
So it allows you to bring your blood pressure down, your stress levels down, your cortisol levels down, it allows you to come into a bit more of a balance to be more mindful at the moment to connect with your body and pay attention to what it’s doing. So we’re glad you found that.
Shamarah Giannetto 38:56
Yeah, and a lot of what and I didn’t go to class as an I go to very few classes, I found videos online and I just did, I did restorative yoga, I did therapeutic yoga. So I started small. And a lot of it was just, you know, there’s like these mantras that kind of go through it’s just observed this, observe this.
Shamarah Giannetto 39:18
And I think it is just helpful to kind of, you know, a few you are your baby. You know, like we see our children, we go, Oh, I think they’re hungry, you know, and it’s not they’re screaming about it, but okay, they’re hungry. We observe and we don’t judge, you know, and that’s hard to do when it’s ourselves. But what a gift to give yourself just observe.
Shamarah Giannetto 39:44
You know, this was hard for me and so I think, I don’t know if being a special education teacher again prepared me for this. But just that ability to say like, wow, you know, like we need to work on this specific behavior or we need to work on Under skill, that’s kind of just how I treated myself as I need to work on this skill.
Shamarah Giannetto 40:04
And I don’t know what my benchmarks are going to be or when I’m going to reach them. But that’s my goal is going to be to stand on my left foot and, you know, close my eyes for two seconds.
Bill Gasiamis 40:20
The thing you said, I need to work on this behavior. That’s, I think, really insightful on the show if you picked up on how insightful that is. Because if your behavior is getting in the way of you, healing and recovering, you’ve got to work on that behavior.
Bill Gasiamis 40:36
If you’re getting shitty at yourself, because you’re not further along, and if you’re getting angry at yourself, and if you’re being irritated when you can’t do the downward dog that day, that’s getting in the way of your recovery. And you do have to change your behavior, how you behave to yourself.
Shamarah Giannetto 40:57
Yeah, yeah, you do. And be kind to yourself. I mean, I think I think that is a hard thing to do.
Shamarah Giannetto 41:06
And again, like just observing that behavior, you know, when you’re, and I think that’s where the journaling helped me be and turning it into gratitude when I was getting down in the dumps about things and just realizing that things may be tough now.
Shamarah Giannetto 41:22
I’ve had a good life, and I plan to have a good life, you know, like, I’m in the middle right now, and can’t kind of see the forest for the trees that, you know, soon I will, I’ll get to the top, you know, and be able to look around and go, Well, I was right there. But I know for everybody, it’s different.
Shamarah Giannetto 41:40
And I was when I found your podcast. I was feeling like, man, they told me six months. And that’s all I have, like I’ve six months to get to this part. And I’m not getting there. And then when I started hearing other stroke survivors talk about their, you know, experiences and how they are still seeing improvement after years and learning things.
Shamarah Giannetto 42:07
That brought me peace. And so I do think for anybody who you know, is in this situation, just seeking out other stroke survivors. And so I’m so glad you have this podcast. Because for me it is like the day that I found it. I remember coming home, and I was so excited.
Shamarah Giannetto 42:24
And I was like, I found this podcast, and there are other stroke survivors. And they’re young. And, you know, they’re, you know, it was like, Oh my gosh, there are other people like me, because I didn’t see that when I was in the hospital. And I didn’t see that.
Shamarah Giannetto 42:40
You know, a lot of the doctors, I feel like now it’s hard for me to get appointments or to be not taken seriously. I mean, they have to I had a stroke. But I’m young, and that’s what they all keep saying is like, Oh, you’re so young. And it’s like, Yes, I’m young. And I had a stroke. And I’d like to, like see my daughter graduate. You know, I’d like to see her do whatever she’s going to do in life and help me get there.
Bill Gasiamis 43:09
That’s a beautiful request. That’s a beautiful request. I love that. Just help me get there. I love it.
Shamarah Giannetto 43:16
Yeah, that feels
Bill Gasiamis 43:17
wrong into perspective. You know, that just puts it all into perspective. It’s like, just help me get there. You know, what you’re saying is, I’m not expecting you to be perfect. I’m not expecting you to solve all my problems. Just help me as much as you can to get me closer to them. I love that.
Bill Gasiamis 43:36
Is it a reality? Yeah, that’s a lovely way to say it. So um, you spoke about your emotional your mental recovery, and your physical recoveries? Are you the kind of person who’s able to separate the mental recovery and the emotional recovery? Do you have a sense of where that’s at? How’s that? How that’s going?
Shamarah Giannetto 44:00
I think so. I think it’s it’s felt so separate, just because one has been so much more rapid than the other. And so the mental part that I’m dealing with right now is what now? You know, I’m expected to go back to work. I don’t know what capacity if it’s going to be part-time. I don’t think I can do it full-time.
Shamarah Giannetto is dealing with mental fatigue
Shamarah Giannetto 44:29
I’m still at the stage where my mental fatigue is kind of controlling my days. You know, it’s just the way it is, is Rachel and I were talking it’s stroke gives you like this direct line of communication to your body and your brain, right?
Shamarah Giannetto 44:45
Like I don’t have a choice but to listen because when I hit a wall, there’s no second wind coming. I have one wind and that wind when it’s gone. I rest and that surrender has been hard. Because we, you know, for 46 years, I kind of spent ignoring those cues, right?
Shamarah Giannetto 45:11
And so now it’s just being very tuned into that, like, Okay, I’m tired, I’m gonna go lay down in a dark room. So making that transition back to work and kind of thinking about, what I want to do. What about what do I want to be when I grow up?
Shamarah Giannetto 45:30
Can I go back to being that person that kind of looks at it, like, there’s before structure, Mara, and now I’m post-stroke, Mara, and post-stroke Shamarah, may not be able to have the same level of patience, or the same critical thinking skills or problem-solving skills that you know, the rapid kind of decision making that’s required?
Shamarah Giannetto 45:56
And I don’t know if I want to go back to that, you know, it’s like, I admire who I was before what I was doing. But I think, I think I might have to do something different. And that is scary.
Bill Gasiamis 46:13
So gorgeous, and beautiful to hear. That’s the thing about it, right? So I am a completely different version of myself, my wife still gets the shits, because I look at her with the same look. Or, you know, I always put my foot in my mouth in the same kind of way.
Bill Gasiamis 46:30
But that’s like exterior surface kind of stuff deep down inside, I’m a completely different version of that person, who, who was heading into stroke and had no idea what it was heading into, you know, completely different.
Bill Gasiamis 46:46
And what you suggested is that this is an opportunity for you to wipe the slate clean, and find a new way to do your life away that serves you and suits you better and is more gentle, and is less pushing and more flowing, just going with the flow.
Bill Gasiamis 47:05
The old me wasn’t a podcaster not only wasn’t a podcast, but I also didn’t know what a podcast was, you know like had no idea. And the old me didn’t have a public face. A public persona, especially not a global one. And the old me never spoke about serious topics like stroke, and stroke recovery, and emotional recovery, and mental health, and all that kind of stuff.
Bill Gasiamis 47:32
I did all that stuff, in some kind of way on my own without mentioning it to too many people. I certainly didn’t have a following audience a topic of passion. I certainly wasn’t an author, I never wrote a book. You know, the old me never did any of that stuff.
Bill Gasiamis 47:49
So the new me has had the opportunity to go, you know what, I’m going to transition from my old way of life to a new way of life. And I’m going to bring you the skills or the things that I learned to push through and overcome this new part.
Bill Gasiamis 48:05
But I’m not going to do the tough through the brick wall kind of way, I’m going to take one brick off at a time, and I’m going to create a cavity that I’m going to walk through, I’m not going to just smash through the damn thing, and I’m just gonna give myself time.
Bill Gasiamis 48:19
And then what’s happening is that’s more gentle. And one of the biggest challenges is right now, literally a couple of hours ago, I received an email from the person helping me write the book. And they’re not writing it for me.
Bill Gasiamis 48:31
But they’re coaching me to get through all of the down parts of the writing, which is the first frustrating, hard, difficult part. And, you know, she has timelines and deadlines, and she has all that stuff that she tries to make me stick to, I just can’t stick to them.
Bill Gasiamis 48:47
Because I’m not writing it for anybody else. Under those circumstances, I’m going to write it in my own time. And it’s going to take as long as it takes, and I’m sorry, if we’ve, if I’m stretching the friendship, but I am at that point where I can’t just wind it up.
Bill Gasiamis 49:04
And it’s because I’ve got to use a stroke brain to write a complicated book about the 10 steps. 10 steps to make people feel like a stroke is the best thing that ever happened to them. But that is not an easy thing to do. And I can’t apply my brain the way I used to apply it.
Bill Gasiamis 49:24
And when I could apply I never did. So I’m learning not only how to apply this new, weird, strange brain, but also I’m learning how to write a book and do something that 31 We’re talking about. Like that 45 years of my life never happened. You know, I wrote an essay.
Bill Gasiamis 49:48
I never wrote a blog post. I never did anything you know. So what what this has done has given me a new sense of who I can become and what I can achieve. Dave, and, and, and how long things need to take and that it’s okay to have long-term goals.
Bill Gasiamis 50:07
And to just move through them step by step, week by week, month by month and just see how far you get, instead of getting frustrated with, Oh, my God looking at a book and going on never fill 250 pages with text and then giving up on day one, how can the ad people do that? And just putting it away?
Bill Gasiamis 50:25
Right? Yeah. So you’re saying is an amazing thing that you’re saying? You’re already talking the way that I’m talking? And I’m 12. And I’m approaching, you know, beyond? Yeah, I’m approaching. We’re just past the limit of 13. I’ve just passed in the past 11 years, out of the first stroke, right? So yeah, it’s brilliant. You can kind find a new way to be you’re going to connect with people differently.
Bill Gasiamis 50:58
And you’re going to have a better insight you’re going to gain wisdom from this thing. And wisdom only comes at certain times in your life. Having a parent is one of them, serious health scares, and otherwise, perhaps losing a loved one is another one. And you know, all these different things. So I love how you’re thinking and how you’re tracking.
A recovery mindset is a gift
Shamarah Giannetto 51:32
I’m trying. Yeah, but, the thing that I just, and I haven’t spoken to a whole lot of other stroke survivors.
Shamarah Giannetto 51:51
And so hearing the stories, I think, is helpful. And I know that there are networks that I can go into. But when I’ve spoken to other stroke survivors, you know when a lot of us are? Well, when and even hearing people on your podcast, it does feel like a gift.
Shamarah Giannetto 52:16
But it feels like a gift that doesn’t have strings attached, but it has grown attached. And so you have to, you know, you have to do the work. And I think I’ve heard you say this is like you have to advocate and be that recovery mindset for yourself. And getting into that recovery mindset. I didn’t even know that was the thing.
Bill Gasiamis 52:44
So I told one of the books, recovery mindset, that’s it. If you get that you’ve won a big part of the battle. Because underneath in a recovery mindset comes a ton of things. It’s like having a gratitude journal. But it’s a recovery mindset. So what do i Is this helping me recover or not?
Bill Gasiamis 53:03
Is this helping me heal or not? Is this serving my recovery or not? That’s what basically recovery mindset is, it’s not, I’m going to recover, I’m going to recover, I’m going to recover. It’s not that it’s just checking in with yourself. What if I go to bed at one o’clock in the morning, and then try and wake up my child and take her to bed? Is that going to serve me? Is that going to serve my child?
Bill Gasiamis 53:24
Is that going to serve my husband? Is that going to serve my family? My recovery? That’s when you ask those questions, and that’s a recovery mindset. It’s really simple, right? But people have a lot of people like, hopefully, what they do after stroke is reassess the way they approach life.
Bill Gasiamis 53:43
Because if they bring old habits and behaviors to stroke recovery, that didn’t serve them, they’re going to 10 times not going to serve them. Yeah, going forward, you know?
Shamarah Giannetto 53:58
Yeah, I had to make a list early on about things I could control in my recovery, and what I couldn’t. And that was helpful because I was dealing with this timeline in my brain that doesn’t exist in reality.
Shamarah Giannetto 54:17
And so just go into that, making that list of what I can control and a lot of it was just, I can control me, I can control my responses I control. You know, that question of whether is this serving me I quit drinking alcohol about a little over a month before my stroke. Because it wasn’t serving me.
Shamarah Giannetto 54:37
I didn’t have a problem drinking. It just wasn’t serving me. I didn’t know. I was getting headaches. I was not sleeping. Well. That’s not a great way to go about life. And so luckily, at this end of recovery, that wasn’t something I had to give up. You know, and now I have an even better to no better reason to never drink again. But it wasn’t serving me to begin with.
Shamarah Giannetto 55:07
And, it is something that I’m asking a lot about, you know, I need to make an income. I need to bring in money. We live in California, it’s very expensive here. A lot of people don’t live on one income. And I’ve had my career I had my daughter late in life.
Shamarah Giannetto 55:26
And so I already had a career, I’d had all those things before. And so it was just like, now I’m a parent, and I have a career and I do these things. And then finding I just really unloving being a parent. And I’m getting this time to be her parent, which I’ve never really had.
Bill Gasiamis 55:45
That’s a blessing. It’s a gift.
Shamarah Giannetto 55:48
Not I mean, and, and I think for her, she’s seeing me have to say, hey, I need to stop, my brain is tired. I need to take a break. My brain is tired. I need to rest. My brain is tired. So she’s learning things for me. And she might be joining us now. Yeah. Hi. That I never saw my parents do you know, because they didn’t have a reason to?
Bill Gasiamis 56:18
Oh, yeah. Did I make your mom wake up way too early? Sounds like I woke up the whole family.
Shamarah Giannetto 56:30
No, she’s this is her normal time. Okay, six, it’s 6 am. Here.
Bill Gasiamis 56:35
Yeah. So that’s brilliant that you’re, you’re doing exactly that you’re leading by example, right? So you’re able to sit at a different example than most of us do. Now, I know that I didn’t set a good example for my kids when they were young. Now. But I was 22 when I had my first son. So I didn’t know any better.
Bill Gasiamis 56:55
I was just, I was just guessing. And I was getting really bad. But what’s cool is that I got the opportunity when they were 11, and not 10, or something, you know, when I had the stroke, that 11 and 15, I got the opportunity to redress some of those things that I knew that I was doing wrong.
Bill Gasiamis 57:21
But I knew I was doing wrong even back then. But I couldn’t make the changes that I had to make because there wasn’t an urgency around. Or it wasn’t as serious as I thought it was, or, you know, I played it down, right?
Bill Gasiamis 57:35
So then when we got them being nearly teenagers, one of them was a teenager, the other one, nearly a teenager, and I realized I might not be around and I was concerned about what my legacy might be in their minds and their hearts. You know, I had that time, I had exactly that time to set a good example of how to overcome adversity to know how to take responsibility, how to have the right mindset.
Bill Gasiamis 58:00
And, they’re not they haven’t necessarily gone with it and just ran with it. But what I hope is when they get older, and maybe when I’m not around, they’ll go.
Bill Gasiamis 58:12
And if they have to struggle with a health condition they might go in, I remember how my dad went through this, you know, I might take a couple of things out of that book, and maybe apply them to my recovery. That’s all I can do, we can only do that. And sometimes I enjoyed having all my time at home alone when my wife went back to work.
Bill Gasiamis 58:33
And then I enjoyed being home when they came home from school. Yeah, that was cool to be home at like four o’clock or whatever time it was that they were coming home from school. And I was able to just attend to them in a way that I normally couldn’t attend to them.
Shamarah Giannetto 58:50
Where I’m struggling still is, you know, again, with, you know, being so early in the recovery. I just don’t have the endless energy, parenting takes a lot of energy. Parenting and working takes a lot of energy. You know, like, just, it’s so interesting to observe just how much energy goes into having a conversation with a six-year-old, I imagined with a teen as well.
Shamarah Giannetto 59:19
I taught high school I remember, you know, and I wasn’t a parent, I was the teacher, but still it was, you know, there were complexities, you know, involved in that. And so, I think what I have been trying to do is kind of hack my system and figure out like, if I conserve energy mid-day, will I have more in the afternoon? And I’m just finding no, the answer’s no, not yet.
Shamarah Giannetto 59:46
Not yet. Not yet. And so it’s just and it’s, you know, I had a physical therapist, say just notice it and notice that you know, could take for, you know, four to six weeks at that level. And then you’re gonna see He change, or maybe not, you know, but just observe and just when you’re aware of where your energy is, you kind of know how to schedule your day.
Shamarah Giannetto 1:00:09
And right now I have the freedom to schedule my day. But soon I will not have that same kind of freedom. And that feels kind of daunting, like, I’m not ready. And I don’t know, you know if that’s a conversation to have with the doctors just to say, I don’t think I’m ready. Because physically I could do a job. Mentally, I can’t have it with your job, however, with
Bill Gasiamis 1:00:33
your employer.
Shamarah Giannetto 1:00:38
good conversation to have with my employer. Yeah.
Bill Gasiamis 1:00:40
So what happened with me is, I went back to work and all the things that you’re describing, I felt and I went through, and it was hard. So went to, so I had, I had a one hour. And I went and worked for somebody in an office where there wasn’t my job at a property maintenance business.
Bill Gasiamis 1:00:56
So I couldn’t work in my own business, I went for it with a friend of mine to work in an office that he got me the job in, you know, it was a really basic dead-end kind of job. But it was enough to kind of start transitioning me back into working life.
Bill Gasiamis 1:01:13
But when I got there, the first couple of weeks sitting in front of a computer for eight hours, I was wiped out by about 10 o’clock, 1030 in the morning. And then and then I was useless. But because he knew my situation, he was able to cover for me and I was able to get away with doing not a lot, right?
Bill Gasiamis 1:01:30
But then when I came home, I’d be wrecked at home, because then it’s another hour’s drive home. And then I’ve got to get into the mode, the mode for dinner, and homework and all that kind of stuff.
Bill Gasiamis 1:01:44
So that was challenging. So what happened, though, what I noticed is I started to improve my ability to focus and concentrate. So I was there for three years in total. But in that time, I started to see significant improvements in my ability to be able to focus, and that focus came and went, but some days when it was there, it was really good.
Bill Gasiamis 1:02:14
And, that kind of gave me the benchmark for okay, we’ve got this far this time and work towards getting that far again. And if we can go beyond that we can.
Bill Gasiamis 1:02:25
But that also meant that I had to take a lot of breaks, and people had to know what I was capable of and what I wasn’t capable of swept lights above my head, and I needed to have them off because they used to tie me out and then drain my energy even further.
Bill Gasiamis 1:02:43
So happy headphones are on in the office. So if we didn’t need to talk to each other because it was loud, I put headphones on No, with no music, just headphones, just soccer muffle the sound. So that I can get less stimulation in if I can minimize the stimulation, or that type of stuff works.
Bill Gasiamis 1:03:05
And I remember with my naps when you were talking about, you know, your you can rest and have a nap. But with my naps, I remember like, like my children, I remember when there were bits, say between one and two there would be X amount of hours nap during midday.
Bill Gasiamis 1:03:22
And then as they got between two and three, their hours decreased and decreased and then they went napping at all. And that’s exactly what I was doing my naps were taking an hour, then they were taking 50 minutes, and then they were taking 40 minutes.
Bill Gasiamis 1:03:34
And eventually, they decreased and then I wasn’t needing them. But sometimes I needed a recharge at around three, or 230, or something like that. And I would even go into the car, and meditate and sleep and good 15 minutes at lunchtime in the car if I could. So that worked as well.
Bill Gasiamis 1:03:55
So you do anything you can. But six months is a very common thing that I hear people get told by the doctor should be able to get back to work in six months, and they all work for it. Some of them get there. Many of them get there and they hit a brick wall. And then it’s even harder.
Bill Gasiamis 1:04:15
So start that conversation with your employer and let them know what he knows about the unknowns. This is because I don’t know what it’s going to be like, I don’t know how much work I’m going to be able to get done.
Bill Gasiamis 1:04:30
I don’t know how productive I’m going to be for how long for how many hours and so on. So just give him information about what you don’t know. And then you can just send him this is what I do know. I’m happy to come to work if you want me to come but I don’t know anything else.
Shamarah Giannetto 1:04:45
I will be here.
Bill Gasiamis 1:04:49
I’ll turn up on day one.
The importance of time management for Shamarah Giannetto
Shamarah Giannetto 1:04:53
Yeah and even I’ve noticed with myself that you were talking about reading your book and just working with the stroke brain. Time management seems to be something that is just a mystery to me right now. It takes me so much longer to get ready.
Shamarah Giannetto 1:05:14
It takes me, you know, I’m still getting my daughter off to school every morning and things like that. I do not have deep worries about myself. But that combined getting me ready and her ready in the morning because my husband usually goes to work pretty early.
Shamarah Giannetto 1:05:32
It is going to be a new thing, you know, like, we’re both going to be late for a while. And that’s kind of just been my approach even in the earlier days, just getting her to school, I had to tell the teacher she’s going to be tardy, and it’s not her fault. It’s mine.
Shamarah Giannetto 1:05:49
Because like, there’s this weird time wormhole that happens. And suddenly, we’re 15 minutes late, and I don’t know what it is. But it just happened. And so that’s yeah, it’s just, it’s just something that, you know, I’m observing. And it’s like, well, I’m working on it. But at the same time, it just, it’s kind of who I am, right?
Bill Gasiamis 1:06:17
Yeah, getting ahead of it is cool. Like what you do with the teachers and letting them know, that’s cool, because then that just takes the pressure off that says, we’re going to do our best to get here.
Bill Gasiamis 1:06:29
We’re not going to worry about not getting there, we’re not going to scream at each other or rush or do any of that stuff. And then if we get that bonus, if we get there late, well, whatever. Yeah, it’s not isn’t going to change anything.
Bill Gasiamis 1:06:44
You’ll already get into school a few minutes late, and you being a few minutes late and putting in clothes, it’s not going to change anything, there’s no appointment that you need to get to where if you’re three minutes late, then it’s the end of the world, that’s not going to make a difference.
Bill Gasiamis 1:07:01
That is a great thing to learn to just go with URC you aren’t going with the flow. You didn’t realize that you could be with one of those people. But here you are you.
Shamarah Giannetto 1:07:16
Yeah. Yeah. Yeah, and it’s good I feel like it’s a good place to come to. And people when you explain to them what’s going on, and you’ve had a stroke, it gives you this really interesting hall pass. And not that you use it that way.
Shamarah Giannetto 1:07:33
But it is something that when you share with people what’s going on? They don’t question why you’re not going to go out, they don’t question why you’re not going to be there. It’s like, oh, okay, you know, I mean, eventually, I think that’s going to change as more time as the time continues.
Shamarah Giannetto 1:07:50
But now when I draw those boundaries, or when, you know, I just shared this is why I am the way I am. People are very accepting and understanding. And that’s been a blessing too because it’s kind of a mystery when people don’t, especially if they haven’t seen stroke, or if they have seen stroke, that has, you know, really taken people a while to recover from.
Shamarah Giannetto 1:08:17
And here I am, you know, walking my daughter to school, and I’m doing these things but I’m saying I don’t think I can volunteer for the school carnival because it’s too loud. You know, and I don’t have the energy for it, because that’s happening right in my window of where I need a nap or I need to be resting. But yeah, people are very understanding,
Bill Gasiamis 1:08:41
we turned down a lot of events, I still struggled to go to the football here, because it’s too loud and for too long. And then, also used to leave people’s parties and go and slip on their bed for an hour. I’m not gonna ruin the party for everyone, and I want to be here.
Bill Gasiamis 1:09:02
I just can’t be here right now I’m gonna go lay down on your bed. If you don’t mind for an hour. Go do that. Kind of get a little bit of a refresher and then go back and join everybody. And then often we left early as well. So guys, you know, it’s 11 o’clock, it’s one hour past my bedtime. I’ve gotta go.
Bill Gasiamis 1:09:20
Thanks for seeing it. But I can’t, I can’t keep it up. And, then I also did milk the I’ve had a stroke routine. I did that on purpose a few times and got away with it.
Bill Gasiamis 1:09:34
But then it got old, like you said, after about three years of running that after brain surgery running that line got old eventually because they could kind of tell the extent of my recovery and when I was putting it on, you know. So I’ve stopped doing that now.
Bill Gasiamis 1:09:55
I know that you’re gonna get ready for another day. So what I want to do is wrap this up for you. Thank you so much for being on the podcast. But before we go on ask a couple of questions. One of them is what has strictly taught you?
Shamarah Giannetto 1:10:13
It’s a great question, I think stroke has taught me, again, kind of just that direct line of communication with my brain and body to listen. I read all this the other day because I was worried I would forget
Shamarah Giannetto 1:10:34
to ask for what I need, and to not feel any guilt or shame about it, I need to rest, I need help. That my worth isn’t tied to producing something.
Becoming more observant and curious
Shamarah Giannetto 1:10:51
My worth is just tied to thinking it’s helped me with just being curious and observant with myself and just with others, and decreasing my judgment, you know, sort of just don’t know what’s going on. And I don’t feel like I’ve ever been a harsh, judgmental person.
Shamarah Giannetto 1:11:18
But I think we can get into those routines. But so instead of that, just being curious and observant. And I think it’s taught me that baby steps are, is still moving forward, you know, baby steps or steps. And whatever that is, and, to be aware of, however, I wake up that day feeling that’s going to set the tone for the day.
Shamarah Giannetto 1:11:50
But it can also not be like the harbinger of doom, if I’m feeling tired, I can still have a really good day and be tired. I can still do things and be tired and barely be struggling, you know, struggling like the other day, I was walking around looking for my phone, and it was in my hand. And so it’s like, is this middle age or is the stroke?
Shamarah Giannetto 1:12:17
And, I think I’m fortunate too that the stroke didn’t affect my personality, it didn’t affect my sense of humor and my ability to laugh at myself, and to see the humor and things. And I think that’s important to stroke has reinforced the gift of humor, and just being able to still laugh. I’m still enjoying life.
Bill Gasiamis 1:12:46
Brilliant. You might have answered this next question, partly with that answer as well, because they’re similar questions. And you’re not quite a veteran stroke survivor. You’re just very early on. So you former baby stroke survivor. Yeah, yeah. But I’d love to ask you. What are the some?
Bill Gasiamis 1:13:05
Well, I’m not sure if the right words, advice. But what would be some advice you’d give somebody who’s listening to you now? And you know what? They are just on the very first couple of weeks of stroke recovery because we have some people like they’re fine in the podcast as well.
Bill Gasiamis 1:13:18
And I reckon everyone who’s been in stroke recovery for more than somebody else is going to have something to share. What would be the one thing that you advise people?
Shamarah Giannetto 1:13:32
I know if there’s one thing I think I hope people who are in the early onset stages of stroke recovery, find your podcasts. Because I think it is a very positive podcast when it comes to, you know, like when you’re wrapped up in that hospital world of people checking your vitals checking blood giving you bad news or news, that doesn’t mean anything because it’s nothing new.
Shamarah Giannetto 1:14:04
To just know, that it gets better. And it gets, it can get good. If you want it to. You can take control of some things. And to find something that that you enjoy doing, that you can do, you know, a couple days a week or every day that just will make you feel grounded and happy.
Shamarah Giannetto 1:14:38
If that’s meditation, if that’s prayer, if that’s getting up and moving or you know, petting your dog, just to do it every day. And then do add to it. You know, just keep growing. That’s my baby wisdom.
Bill Gasiamis 1:15:00
That’s beautiful wisdom. There’s beautiful wisdom. On that note, what I’m going to do is I’m going to put it out there, I’m going to say.
Bill Gasiamis 1:15:06
So if you’re a stroke survivor listening to this, and you’ve heard this, and you agree with some of the stuff that Shamarah shared, I want to just bring your awareness to, if you do think this podcast is useful for other stroke survivors, please do share it with people, that’s the only way they are going to find it, you need to share it and let people know you need a comment.
Bill Gasiamis 1:15:32
On YouTube, you need a thumbs up, you need to subscribe because then that makes the algorithm and all that weird stuff work in the podcast’s favor. And then you would do me a massive favor if you went to iTunes and left a review a five-star review if possible.
Bill Gasiamis 1:15:51
Or in review, but not a bad one. Don’t leave bad reviews. And then, and then do the same thing at any other podcast app, whether it’s Spotify, or whatever because it’s just that’s actually what helps people recover.
Bill Gasiamis 1:16:07
And if you remember what it was like when you discovered it, and how you felt when you felt like you weren’t alone, and this wasn’t happening just to you, then that’s the gift that you’re gonna give to other people. So Shamarah thank you for that.
Bill Gasiamis 1:16:20
I appreciate you joining us on the podcast and I look forward to hearing about how your ongoing recovery goes.
Shamarah Giannetto 1:16:29
Thank you. Thank you for having me. And thank you for doing what you do.
Bill Gasiamis 1:16:33
Thanks for joining us on today’s episode. I hope you enjoyed our chat. 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. Go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:16:48
If you’d like to support the show, and I hope you do, please leave this show a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube comment below the video I will respond to your comment.
Bill Gasiamis 1:17:02
I love seeing comments below the videos like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, just come and join me on the show.
Bill Gasiamis 1:17:18
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor. Go to recoveryafterstroke.com/contact and fill out the contact form.
Bill Gasiamis 1:17:32
As soon as I receive it, I will respond with more details on how you can choose a time that works for you and me over Zoom. Thank you again for being here. And listening and commenting and leaving a review and sending me amazing emails. I appreciate you see you on the next episode.
Intro 1:17:53
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