Recovery After Stroke

By Recovery After StrokeEducation

Recovery After Stroke episodes

August 29, 2022 Pontine Stroke Recovery – Ginn Thompson
Ginn Thompson is on the road to Pontine Stroke Recovery which occurred in March 2022 when she was age 38.
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Highlights:
01:20 Introduction
01:39 Pontine Stroke
04:33 Another Case of Misdiagnosis
17:19 Post Stroke Deficits
23:18 Light Sensitivity After A Pons Stroke
32:02 Educating People
41:45 The Art of Imperfection
50:04 Being An Introvert
59:06 Pontine Stroke Recovery
1:11:13 It’s A Marathon
Transcription:
Ginn Thompson 0:00
From when I had my stroke on a Thursday, to even when I was in the hospital, I was either breastfeeding or pumping, which isn’t an easy thing to do when you’re okay. And that can be really draining, and I don’t know how I did that. I think when I look back on it was a really incredible thing. And I am proud of myself for doing that.
Intro 0:35
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill 0:49
Hello, and welcome to episode 212 of the recovery after stroke podcast. If you are a stroke survivor with a story to share about your experience with stroke, and you have been thinking about reaching out to be a guest on the show but we’re waiting for the right time to reach out, this is it.
Bill 1:04
If you go to recoveryafterstroke.com/contact, you will find a form that you can fill out to apply to be a guest on the show. 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 to meet over zoom.
Introduction

Bill 1:20
My guest today is Ginn Thompson, who was breastfeeding her newest baby boy and recovering from a stroke at the same time. Ginn Thompson welcome to the podcast.
Ginn Thompson 1:29
Thank you for having me.
Bill 1:31
My pleasure. Thank you for being here and reaching out and agreeing to be interviewed. Tell me a little bit about what happened to you.
Pontine Stroke
Ginn Thompson 1:39
Well, back in February of 2022, I had a baby, my third son every single week, pretty well as expected. And then about six weeks later, I went to follow up with my doctor. I think it was a Tuesday I got cleared, all was good and two days later, I had a pontine stroke.
Bill 2:04
Did they know the cause of the stroke?
Ginn Thompson 2:10
They have not figured out the cause. I have no underlying heart issues, I’m not on birth control, I just had a baby obviously. The ultrasounds of all my arteries everything have been fine. So no history of it in my family. Nothing that would indicate that I could potentially have one.
Bill 2:36
And you are only 38 years old.
Ginn Thompson 2:39
Yeah, it was the day before my 39th birthday.
Bill 2:43
Wow. That’s a heck of a way to be spending your 39th birthday.
Ginn Thompson 2:48
It was I was sitting on the couch feeding my son. And I stood up and all of a sudden, my eye was very hot. Like I had touched a jalapeno and then touched it and all of a sudden I got very dizzy. And I don’t remember a lot of my birthday this year. But somehow we made it through and I continued to feed him until I went into the hospital on a Monday afterwards.
Bill 3:25
Okay, so how many days lapsed between that incident and then when you went to hospital?
Ginn Thompson 3:33
So my father is a physician he lives in Ohio. My mom was actually here visiting us on that Thursday night when it happened. It happened about 7:30 Central time I believe. When it happened she immediately FaceTimed him to look at me and make sure he thought we shouldn’t go straight to the hospital because I could not stand up.
Ginn Thompson 4:00
He said, let’s sit down and I did not have a lot of the symptoms that you normally see on a stroke survivor I had no drooping, I could raise my arms fine. So we stayed until about 24 hours later. And by the middle of the day she FaceTimed him again and he looked at me and said you need to go to the hospital.
Another Case of Misdiagnosis
Ginn Thompson 4:33
We went to the hospital and they sent me home. They thought it was a migraine. Because I just had a baby they thought it was something related to that they did a CT, showed nothing. By Sunday when I still couldn’t talk I sounded like my four year old little boy, just slurring my words.
Ginn Thompson 4:59
We decided we needed to get someone to order us an MRI pretty quick. Monday morning, we tried my family doctor here where I live, we tried my OB, and we did not feel like we should go back to the hospital that sent me home. So we went to a hospital in the nearest big city, which is about an hour away. And they didn’t believe me either. That that’s what I thought I’d had. Triage took about an hour to even take me back to a room. It was quite frustrating the whole process.
Bill 5:42
That whole thing, it’s the one thing that irritates me so much when I hear people saying the doctor didn’t believe me. I mean, if somebody comes in and says, I think I’m having a stroke, wouldn’t it be better to rule it out, rather than assume it’s not there. I know, they’re human so I’m gonna give them a break, and because of them, we’re here and all that kind of stuff.
Bill 6:10
But the assumption that you know what it is just because that person has walked into your hospital, and you already know what it isn’t, or what it is. He’s just insane that they do that without any information without any proof. One way or the other. I can’t get over it. I hear it’s so often, I would have thought it was a thing of the past, you know, I’ve been going on this journey for 10 years myself, I would have thought by now it was a thing of the past, but it’s not, it’s so common to hear that people get turned away from the one place that they go to for help.
Ginn Thompson 6:51
Well, it’s very frustrating, because that’s what was going on. I told them, that’s what I thought was going on. And it’s almost like they didn’t even listen to the symptoms that I was presenting. I felt very alone. The medical community wanted nothing to do with me, because I had no warning signs, I had nothing that could put me in the category of having a stroke.
Ginn Thompson 7:29
I was young and healthy, I’m not overweight. It’s just it was very, very frustrating. Because I feel like I’m pretty literate in the medical community because my father is a doctor, and we’ve been around the medical world. And just to be kind of pushed aside like that is very frustrating. And it wasn’t until they diagnosed it that things started moving a little bit quicker. And even then I don’t think what was done was done fast enough, if that makes sense.
Bill 8:10
Yeah, it completely does. So you’re a mum of two, then soon after you’ve become a mom of three. And in a very small amount of time between the birth of your third child and you being at home. With that third child, you experience a pontine stroke.
Bill 8:33
And then you’re in hospital. And I imagine at that time, you have to leave the kids at home, and you’re being treated for a stroke. What’s that? Like? What does it feel like to be taken away from your children, and as a result of that situation at the same time being treated for something life-threatening? How did you navigate that?
Ginn Thompson 9:07
Well, I my family was here to help on with the kids fortunately. So I knew they were in good hands while my husband and I were at the hospital. But you feel very helpless on every end because I knew I could not, there was almost no way shape or form that I could take care of the kids.
Ginn Thompson 9:34
I was still in the days leading up to me going to the hospital was still breastfeeding with after having a stroke and I’m not quite sure how I did that. But then being at the hospital, you I couldn’t throw a ball. I couldn’t use my right hand. So how am I supposed to make them a peanut butter jelly sandwich? It was a main point of focus for me. And my recovery was getting back because I knew that I had to be able to take care of them. And that wasn’t going to be an easy thing to do by myself anymore.
Bill 10:24
Yeah. How long did it take for you to leave hospital?
Ginn Thompson 10:28
I was only in the hospital about 36 hours, maybe not even that, and they sent me home. I was told to follow up with a neurologist. But the neurologist didn’t have an appointment until the end of July, which was another extremely frustrating thing, because you think they’re going to give you answers. I was able to start therapy the next week.
Ginn Thompson 11:07
But I was told from the beginning, though, the doctor is only going to be with you a couple of minutes in your appointment, and your therapist is only going to be with you an hour, maybe once a couple times a week at most. So most of the time, you’re going to be by yourself or with your family. And no one is going to care about your recovery as much as you are. And I think that really helped me stay focused on the fact that I had to get better and most of it, I was gonna have to figure it out by myself.
Bill 11:48
And that’s so sad, but it’s so true. It is so true. It’s the reality, most of us end up getting patched up and sent home and then then you’re left on your own to work out the mental health issues, the physical issues, the emotional issues, and then all the economic issues, and the feeding issues, and just being normal human issues. It’s just such a dramatic shift in your life experience that you can’t happen to manage all those things at once.
Bill 12:25
You don’t have the skills to because you’ve never been taught how to you all you knew was what, what it was like before that. And you’re a mum, before the strike, and you’re a mum after the strike, and you’re dealing with little children. How much harder was motherhood or parenting? After the stroke compared to before?
Ginn Thompson 12:47
I think the hardest thing was to come home and have my seven-year-old say, I know you had a stroke. And you go do you know what that means for Mommy? I need you to help me. Can you help me walk up the stairs and to have to rely on them for some of the things and you try to be positive about what’s going on and get them to help in your recovery.
Ginn Thompson 13:22
My dad was drafted into the NFL, out of college. And I remember calling him in the hospital. And the first thing I said to him was, I can’t throw a football anymore. Because we used to do that a lot. And so getting the football out when we were at home or the baseball and having my son throw it to me and practice catching or practice throwing to him and making my recovery part of being a mom really, really helped me.
Ginn Thompson 13:55
Like I said, I’m going to practice getting you a peanut butter and jelly today or pouring the milk into your cup and it going all over the place and then say okay, I’m going to try it again and get it right this time. Them helping me do that made it a lot easier because I’m teaching them those things already. My four-year-old can’t do a lot on his own sometimes, so you have to help them and I think keeping in mind that I met that same level now. I have to practice just like he does really helped me get better quicker.
Bill 14:43
That’s amazing, isn’t it that you’re at the same stage at 38 that your son is that for with pouring the milk into the glass for example. You both are not completely capable of doing it without spilling some milk.
Ginn Thompson 14:57
Yeah, he thought it was funny.
Bill 15:00
So from his perspective, it would be, I’m not the only one in this situation.
Ginn Thompson 15:06
Yeah. And I found it extremely frustrating. And I remember going in another room and crying just because I couldn’t get all of it in the glass and just not wanting him to see that I felt that emotion even though it was really real in the moment, obviously.
Bill 15:27
Yeah, it’s fairly new for you. Because this only happened in March of 2022, which is just a few months ago, we’re in August 2022 now. So has this been the hardest few months of your life so far?
Ginn Thompson 15:48
Oh, by far, it’s sort of frustrating, I do marketing and communication for school district for a living. It’s hard to be a good communicator of your message in the school district if you can’t communicate. So I’ve had to work really hard to be able to try to work.
Ginn Thompson 16:19
Fortunately, I always say the way the pontine stroke hits your router and not your CPU it’s very global. But fortunately, you know, everything I’ve learned about marketing, I still know about marketing, it’s just harder for me to execute the things I need to do. But there’s things that people will say to me at work, I haven’t seen a teacher for a while, and she’ll come in and say, Wow, you look great, you’re doing great.
Ginn Thompson 16:54
I look the same. If you just look at me, My smile is different. You know, there’s things that I know will never be 100%, again, that are very frustrating to me. So you kind of put on that brave face for people to say, thanks, thanks for asking how I’m doing.
Post Stroke Deficits
Ginn Thompson 17:19
But it’s actually a very frustrating thing to go through when you’re in the moment. I’m still finding things that I didn’t know, were wrong. There’s been such big kind of milestones in the recovery along the way. And like, for example, I just realized the other day that my right eye doesn’t close all the away. It sort of flutters. I hadn’t noticed that yet. But you kind of gotta get some of the other stuff off the docket before you get to it.
Bill 18:00
Let me shed some light on something that I just realized. So in the episode before this one, episode 211, I interviewed Will paring wood and Will’s in the UK. And he’s had some challenges after his stroke, one of them being that he’s highly emotional, etc.
Bill 18:16
And he was talking to me about all the things that he’s experienced, or the deficits etc. And I’ve spoken about my deficits for 200. And something episodes, as well, to almost everybody that I speak to what I what occurred to me literally this week, was that when I’m facing the sun, and I put my sunglasses on in certain lights, my eye does this weird spasm contraction thing that you can’t see, it’s kind of happening in turtle.
Bill 18:47
And it’s been doing that for years. And I just realized today that it’s also on my left side where the majority of my deficits are, and therefore, it’s probably got something to do with the stroke and the deficits that I had on the left side. It only occurred to me last week when I was driving, and it was like a big aha moment.
Bill 19:07
It’s like, ah, no wonder that thing does that on that eye, and it doesn’t do it on the other eye. So my vision is okay, but it has this real weird response to sunglasses and certain positions of the sun when I put my sunglasses on. So don’t feel so bad that you’re still discovering what it is that you’re lacking.
Bill 19:07
Well, that makes me feel better about discovering things this week, but also makes me wonder what I’ll discover years down the road.
Bill 19:39
Yeah, you might discover some things that are definitely explainable by what it is that you’ve been through and you just weren’t aware of it or you didn’t pay enough attention to it or like you said, there was so many other things in front of mind that you just are not as aware of those little things as you are of the other things.
Bill 20:01
So for me, my biggest issue is balanced, when I’m tired and the way my left side feels and the hypersensitivity and also. And then the muscle stiffness and pain that I feel in the imbalance in the way that my left side feels a lot tighter than my right side. So they’re the ones that are kind of playing on my mind on a daily basis, that’s what I noticed.
Bill 20:31
And only is in this very small window, when I’m sitting down driving the car, in this direction facing the sun and putting my sunglasses on that I get this spasm in my eye, so I have to really be conscious of it. And when you’re driving, I’m really I’m focusing on the road and the traffic and the pedestrians. So it was just a big Well, Oh, okay. I was bit shocked by that noticing.
Ginn Thompson 21:05
That’s so interesting. I also just noticed that on my right side, which is the side that was affected, I only get patches of goosebumps on my skin when I get cold. I knew I did not feel temperature really on this side. I just felt like air or whatever. But I didn’t realize that my skin was that kind of disconnected still, so that kind of makes me laugh a little bit. I think it’s sort of freaky.
Bill 21:41
It is freaky. In summer I will perspire on my left side, and not my right side.
Ginn Thompson 21:48
Me too well, opposite. But yeah, it’s, so interesting. I’ve had a lot of trouble with my vision, and stimuli. I work in an office with big windows and I have fluorescent lights, and then the computer screen in front of me. And I almost have to wear my sunglasses the whole time I’m at my desk. It’s really affected my my left eye, oddly enough the right side of both of my eyes, but the right side of my left eye quite a bit.
Ginn Thompson 22:32
So that seems to be the main challenge I’m overcoming at the moment. But you know, stress, I just feel stressed so much more. And it doesn’t even have to be real stress, it can just be walking in my house and hearing the TV on and the kids yelling. But I immediately kind of get tired and cramp up. And I just have to keep you know, there’s so much more energy that goes into telling yourself reminding yourself to walk right or to use your hand correctly, you’re to relax your shoulders and keep your shoulder blades back and it can be exhausting.
Light Sensitivity After A Pons Stroke
Bill 23:18
Yeah, and to breathe. Now. I was working in an office for a little while as well before. So probably that finished in 2019, from 2016 to 2019. And we had fluorescent lights and a big window. And I would often wear my sunglasses in the office. And one of the things that happened by chance is the light globe on top of me blue.
Bill 23:51
And they were going to get it replaced. And just as they were going around counting all the light globes, I just asked Is it possible not to replace that light globe. So the rest of the room had the light bulbs replaced. And but I didn’t have my one replaced. And that made a massive difference to the way that I experienced that sensitivity to light, especially fluorescent light.
Bill 24:15
And it eased my fatigue levels and it decreased the levels of my fatigue. So perhaps it’s a suggestion that you can make about just removing any fluorescent light that’s directly above you or very close to being directly above you. Just so that it can ease the amount of I’m not sure like, what the word is, but the intensity perhaps of the light that’s hitting you from above. It really will help. fluorescent light is one of the worst lights for anybody especially for people who have got a brain injury that they’re so early on in the recovery.
Ginn Thompson 24:58
Yeah, it’s funny the maintenance guy came in today. And I said, Is there any way you could take out just like one bulb, so I could try it, I just have power the one over my desk. And see if that makes a difference. Immediately I could tell a difference. You know, so hopefully that will continue to make me feel better. Because by about one or two o’clock in the afternoon, I would be so fatigued, I couldn’t even look at my computer anymore, I was just worthless.
Bill 25:31
Yeah, that’s the same experience that I had. Also, what I do at home, is all my overhead lights don’t go on especially, well, we might have them on for dinner. And then as soon as dinner is over, if it’s in winter, when we’re still on a very short day, we’ll switch on the lamp.
Bill 25:52
And then the only overhead lights that are on, we have our kitchen, our meals and our dining and then our little sitting area nook area where we watch TV or whatever we do. So the only lights that are on are the ones at the far end where the kitchen is, so that it illuminates the room, but it’s nowhere near me and nowhere near above my head.
Bill 26:16
And then the lamps that are switched on have got those really warm LED globes that make it feel like it’s an old day globe. And then that just allows my brain to just unwind as well. At the same time, rather than being constantly bombarded by this sensation above my head.
Bill 26:44
And from time to time, we’ll have people come over and then we’ll switch all the lights on because people are over. It’s really uncomfortable to sit in my underwear in my house with overhead light projecting, especially at night, it’s just really difficult.
Bill 27:00
The sun no longer impacts me negatively, like that, where it used to. But definitely, the overhead lights do. And what I also noticed is that on cloudy days, where it’s got, you know, the weird, hazy kind of sunlight where you don’t really get the sun but you get a lot of brightness that glare that really impacts me. So on a really hazy day, or cloudy day I’ll wear my sunglasses as well.
Ginn Thompson 27:38
Yeah, that’s so interesting. Because in my living room, here, where we spend most of the time, I don’t have any overhead lights, we just have a couple on the wall that you can see. And shutters on our window. When we moved in. It’s just been here ever since. And this room is just dark enough that I didn’t even realize I had anything wrong in my eyes until I started back to work, which was probably about six weeks after my stroke. So I’ve had the same experience so far.
Bill 28:14
Yeah, what does your employer understand transitioning people back to work after a stroke? Do they have any concept of that? I know that you didn’t beforehand, neither did I. But do your employer have any concept of that?
Ginn Thompson 28:31
Yeah, they’re awesome. If I need to go home, if I need to work from home, they’re very, very understanding. And I can’t thank them enough for being such a big part of my recovery because they’ve allowed me to do what I need to do. I always feel terrible because I also had a baby right before that.
Ginn Thompson 29:04
And I had a pretty sensitive pregnancy. So I would go home about two every day, I would only stay half days because being pregnant was really a strain on my body. So I would work from home in the afternoons do different things. And I always am so afraid that because I look the same even though I’m not the same, but they’ll mistake that for like me taking advantage of the situation.
Ginn Thompson 29:43
And I think they completely trust me at this point that I’m just doing what’s best for me. And I’m trying to kind of redefine self-care for myself. Because it’s not always like let’s go get your nails done, or these things that I used to think were self-care.
Ginn Thompson 30:06
Now it’s like putting an ice pack on my neck or my eyes for just five minutes. So I can calm everything down. It’s taking a walk to get away from my computer screen, just 10 minutes around the block. It’s so different than it used to be. And that’s something I still am having a lot of anxiety about and working through.
Bill 30:32
Wow Ginn, you’re so needy. Really, you know, I mean, come on. So tell me about that anxiety part of it, though, because that’s interesting. Clearly, you’re self conscious. Clearly you’re you care about what other people’s perception of you are. But if people are responding in a negative way to that, and I’m speaking by example, okay.
Bill 31:01
Because I was a complete idiot. Before then I didn’t understand anything about anything. So I had all the answers in my head conclusions that I would come to about people and the way that they went about their life and why they were doing certain things. But if they’re doing that, that says more about them, and their ignorance than it does about you. But does that still affect you? Does that still bother you and make you feel bad?
Ginn Thompson 31:33
Well, I want to say I don’t care what people think about me. Because I don’t, but I also worry about them comparing the old me to the me now, even though I feel like I’m actually a more well-rounded person, because I had my stroke. I know that people don’t understand that and won’t understand that.
Educating People About Pontine Stroke Recovery

Ginn Thompson 32:03
I had a guy come into my office. Gosh, this must have been two months ago. And he was just a painter. That was painting one of the schools in our district. And he came in and dealt with some people and on his way out, I of course, had my sunglasses on.
Ginn Thompson 32:24
And he’s like, “Why do you have your sunglasses on?” In this just rude tone. And I said, because he was so rude. I was kind of like, because I had a stroke is that okay? He said, Yeah, and just went on his way. And I’m sure he didn’t think twice about it.
Ginn Thompson 32:44
But I replayed that conversation in my head every single day. Because it’s very frustrating for people I know, people notice that, that they come in and I have my sunglasses on or that the light’s out over my head. But I don’t want it to affect anybody else, if that makes sense. So I don’t want someone to feel uncomfortable, because I’m talking to them with my sunglasses on instead of just, you know, normal like I normally would have before my stroke.
Intro 33:19
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 33:43
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 the seven questions to ask your doctor about your stroke.
Intro 34:02
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 34:22
Screw them! You know I’m seeing you getting emotional over this and, you know, shedding a few tears about this. And it’s like, honestly, I mean, I took it as an opportunity to educate people because I was such an idiot and so uneducated beforehand. And I say that in a loving way to myself. It’s not that I feel bad about who I was.
Bill 34:53
I just was who I was but I think what it is it’s an opportunity for you to do lovingly if the situation allows for it, to save you, because of my brain injury, my eyes really hurt when there’s too much sun, or too much light. And that’s why I need sunglasses. And what that’s done is tied in your sunglasses to your brain injury, and your needs all in the one little sentence, you know, and then it’ll make that person think twice, perhaps it’ll make them less judgmental.
Bill 35:32
And if it does, fantastic, and if it doesn’t, who cares? Like really, it’s a person, you’re never going to come across again, they’re never going to really get to know you, they don’t really care about you, they just feel the need to run their mouth. And then somehow, impress upon you, their noticing of your weirdness or your strangeness.
Bill 36:03
But the reality is, none of us are all the same, none of us are all able to conform or comply to the same rules and requirements as everybody else. We’re all individuals, we all have individual needs, etc. Imagine if we were all arrogant and rude and abrupt as that guy.
Bill 36:24
I mean, it would be so boring and terrible, some of us need to be nice and polite, and he feels the need to be rude and arrogant and abrupt. So, because I don’t know you, well enough to understand deeply how this comment from this person has impacted you. All I can say is they don’t know any better.
Ginn Thompson 36:52
Yeah, those types of interactions are still something I am working on in regular therapy as one of my steps. And it’s something that I think I’m aware of, and I just have to fix it in me. I do struggle with recall. So I’m very conscious of my interactions with others.
Ginn Thompson 37:33
And even in that situation, well, with all situations, if I have to deal with someone I always play it back in my head to think about, okay, did you say that the right way? I remember, this was soon after my stroke, my boss and his wife came to see us and I said, Oh, your hair looks nice, or something to that effect. And I met, she looks very pretty that day.
Ginn Thompson 38:04
And that still bothers me because I just didn’t say the words the right way. And those are the kinds of things that I’m like, you’ve got bigger fish to fry, you need to get over that. But for some reason, they sort of hang on. So you know, it’s not just like the physical therapy and the speech therapy and everything. I’m still working through a lot of it with my therapist every week, my regular therapist, just trying to get my mind wrapped around all the anxiety and everything that comes with it, there’s so much to unpack.
Bill 38:48
Yeah, absolutely. And it’s early days. So let me give you a little bit of an ability to sort of breathe a sigh of relief a little bit, it’s early days, it will improve, you’ll absolutely get better. And a lot of these things will settle down. So keep that in the front of your mind that it’s early days.
Bill 39:09
It sounds to me maybe I’m wrong, so you’ll correct me if I’m wrong. It sounds to me that you’re a bit of a perfectionist before the stroke. And you’re trying to apply the same methodology to yourself after stroke, except you’re actually not the same as you were before stroke you’re completely different after stroke.
Bill 39:29
So you’re going to find that having new ways of processing thoughts in your head about what something means applying a new meaning to these things might be more helpful than keeping the old meaning and trying to superimpose it onto this new experience that you’re having.
Ginn Thompson 39:54
Yeah, I am type A, like the deck finition of it. And it’s interesting, this whole process, you know, I’m trying to apply the same thing to like, being a mom. Like, you don’t have to be a perfect mom, because you can’t be you couldn’t be before. But you definitely can’t be now, that you’ve had a stroke.
Ginn Thompson 40:28
And it really motivated me a lot to try to get as much of my house in order as possible for them, in case something ever happens again, because I know, that is common with pontine strokes. You know, they can’t tell me why the first one happend.
Ginn Thompson 40:52
So who’s to say there’s not another one down the line. So I feel like my perfectionist mentality may come into handy with all these other pieces of my life, but it’s certainly something that I mentally have to work on. And that it’s gonna take me a while.
Bill 41:23
They’re just new skills to learn and apply and new awarenesses that you need to have, a new aha moment that you need to experience so that you can start this new transition this new approach to life, which as a type A personality that you are, let me tell you you’ll work it out, you will apply it you’ll find a way.
The Art of Imperfection

Bill 41:44
So there’s a there’s a beautiful word or I want to call it a word for lack of a better explanation. There’s a beautiful word in Japanese called Wabi-sabi. And Wabi-sabi is the art of imperfection. So what they’ll do is they’ll make a perfect item, piece of furniture, whatever, and they’ll intentionally create an imperfect place somewhere on that piece, whether it’s visible or not, I’m not sure that it matters.
Bill 42:29
And that is specifically put there to give the person that’s building it and the person that’s experiencing this probably closer to truth, thing where the fact there is no such thing as perfection, there is no perfect thing, there is always imperfection, somewhere and that if we’re good at experiencing imperfection and having imperfection in our life, in some way, shape, or form.
Bill 43:02
And embodying that you have a better experience or a better not sure if it’s life overall, but a better experience in life in that, you know, you have an acceptance of things that they are as good as they are. And then they’re also imperfect in some way, shape, or form.
Bill 43:23
And that’s how we all are, doesn’t matter how much we strive to be well, or to be perfect, we’re always going muck up. And we’re always going to do things wrong. And we’re always going to upset people that we didn’t know that were gonna get upset, et cetera.
Bill 43:39
And, together with that word wabi-sabi comes the art of Kintsugi, which is, again, in Japanese pottery, they’ll repair a pot that might get damaged or broken, and they’ll glue it together and then they’ll align all the cracks with gold leaf to take the crack, that should make that vase or that pot useless or render it not useful anymore.
Bill 44:14
And they will make it not only useful but they’ll enhance it and they’ll make it look more fantastical fabulous than it used to be just because it has gone through this life experience of getting broken and then repaired. So many maybe there’s some little things that you can reflect on about how some cultures approach, supposed imperfection and then how they also approach what’s considered damaged by some people is considered enhanced by others.
Ginn Thompson 44:52
That’s so interesting. I will tell other people this I don’t know if I believe it myself yet, but I will always say I was super human before and now I’m just human. I had to be like the rest of you someday, so it’s just happened now. Yeah, I love that. Thanks for sharing that.
Bill 45:22
Yeah, when you get an opportunity later, as perhaps if you’ve got time when we finished the podcast, just Google wabi-sabi, and then Kintsugi and we’ll chat about that after the episode briefly. So I can give you those that information. But for the people that are listening, it’s a proper art form this wabi-sabi to accept imperfection and to incorporate it in the creation of something.
Bill 45:57
It’s kind of this is as good as it’s going to be. And let’s just move on with the next project. And whatever that is. And even in that, this is as good as it’s going to be, is so good. That is so amazing. That is so fantastic. You know, you’ve achieved so much. You delivered such an amazing pace or whatever you want to call it even then, but you know, it has a little flaw. Big deal.
Ginn Thompson 45:57
I like that a lot.
Bill 46:12
That could be a big deal you have a little flaw.
Ginn Thompson 46:37
Right. I have to think about that. And I’ll have to talk to my therapist about that.
Bill 46:47
And this is the other thing I’d love to ask you about is would you like it if your children were as perfectionist, as you were before your stroke? Would you be comfortable with seeing them be like that?
Ginn Thompson 47:05
I think I have one that’s like that. My oldest son is very much like that, I think what I’ve tried to do with them is not be so hard on themselves. They can be a perfectionist, but just getting so upset with yourself is something that I know he struggles with. And I really try to, you know, it’s okay, if you got a 98 and not an 100 on your school paper or something.
Ginn Thompson 47:44
And, you know, just teach them kindness and understanding, especially for people that are different, because that’s something we have experience with now. And I think, I think we’re getting there. I don’t think he is going to be take ultimately not take himself as seriously as I feel like I did before my stroke. I’ve had to learn to accept help, and ask for help.
Ginn Thompson 48:26
For example, carrying the baby in the baby carrier is almost impossible for me. He’s a big baby. He’s like 20 pounds already at six months. And so trying to lift him up into the car and different things is impossible. So I’ve had to tell my husband, I need you to do this for me.
Ginn Thompson 48:50
Where I think before part of my perfectionist personality was not asking for help when I needed it and just powering through and making sure I could do it all myself because that made me feel better or tougher about who I was. And that’s how I ended it totally is and I think with my son tub, I’m trying to teach him that it’s okay to ask for help. It’s okay to accept help. And that’s something you’re allowed to and you’re going to need to do throughout life.
Bill 49:31
Yeah. So your husband, their dad, is here the polar opposite to you, what’s his personality like?
Ginn Thompson 49:39
Oh, I’m such an introvert and he is such an extrovert. He’s a college wrestling coach or was a college wrestling coach and now is during the pandemic we left the college sports world and he’s now teaching physical education for the school district that I work in as well and coaching wrestling there.
Being An Introvert

Ginn Thompson 50:04
He’s so good with the kids, he’s so hands-on, and just is happy all the time and, just a joy of a person to be around. And I feel like I’m the complete opposite of that. I don’t like to see people I would just stay in bed all day and watch TV, he has to be out among the crowd.
Bill 50:30
So is it easy for an introvert to get onto a podcast then?
Ginn Thompson 50:40
I’m part of a couple of stroke support groups online on Facebook specifically. And I found your podcast and have listened to it quite a bit. And one thing that I noticed, in all these communities that I’ve tried to become a part of, is there was no one like me.
Ginn Thompson 51:09
And so I wanted to put myself out there a little bit to make sure that someone didn’t feel like me. And there was someone that knew what they were going through as a young mom I’m 39 I don’t know if that’s young, but having a new baby, being a mom of a couple of kids, just trying to get back to a normal life after a life altering event.
Bill 51:38
Yeah, good on you, truth is that a lot of people will relate to you that are listening, perhaps a lot of them won’t reach out to be on the podcast. And that’s the beauty of it. I I love that almost every person who I’ve interviewed wants to help out other stroke survivors.
Bill 51:56
And they can spend an hour doing that, and they get so much reward for that, because this episode will go to YouTube, it’ll go to all the the other platforms for streaming podcasts, and it can be really listened to by person after person after person. And so many times one hour goes a really long way to supporting a heap of other people, that’s just fantastic.
Bill 52:20
And we have had a few mums that unfortunately also experienced a stroke either just before, just after or during their pregnancy. And that is, you know, you’re sharing similar concerns that they did about how they went around, being stroke survivors, managing all of that stuff, and then the best month that they could possibly be in, you know, experiencing guilt, and all these things simply just because they were unwell and they had to take care of themselves.
Bill 52:59
And, have to be the first priority when they really want to be the priority, the first priority what they want, their child or their children or their family, you know, so it goes towards the lesson that we all have to learn is that we have to be priority number one, if we’re well and healthy, and we can manage all the things we need to manage then, and only then can we be the best we can possibly be for the other people that need us like our family and our children.
Bill 53:37
So that’s what I’ve got out of listening to a lot of mums that went through that as a dad, who had teenagers. When I had my stroke, they were all boy, they were 16 and 12. They were at the worst time in their lives as far as humans go when they’re just terrible teenagers.
Bill 54:02
And I didn’t know the language of teenagers before my stroke. So I was really struggling with trying to bring them in line or, you know, make them better humans or listen to what we said or obey our rules or all of that stuff. I was struggling with all of that. And then I was struggling with all of that plus, trying to explain to them how I’m feeling and what I’m experiencing because of the stroke and how they need to help out more.
Bill 54:32
And still, they refuse to help out because I appeared normal that I looked normal, and they couldn’t understand it. So I struggled as a parent going through stroke recovery. And I’m just a dad, you know, I’m a little bit more removed from what a mom is from a child and I’m not downplaying my role or dad’s role, but still, I was not the person who gave birth to their child and I don’t have that level of emotional connection that mums do with their kids.
Bill 55:13
It’s just a little bit more special, intense, or it’s a greater bond. I’m not sure what the word is and that’s why I love having mums on on the podcast, because many of them need to feel better about all of the challenges that they’re experiencing and how harsh they are on themselves for being unwell. While they have kids, God forbid, you know. So it’s interesting.
Ginn Thompson 55:49
From when I had my stroke on a Thursday, to even when I was in the hospital, I was either breastfeeding or pumping, which isn’t an easy thing to do when you’re okay. And that can be really draining. And I don’t know how I did that. I think when I look back on it was a really incredible thing.
Ginn Thompson 56:16
And I am proud of myself for doing that. I couldn’t get the contact out of my eye, but somehow I could breastfeed my son. And you know, that’s just the way it goes. But I never want him to feel like things were not given to him. Or he was slighted because of my health. At least not when he’s young. Maybe when he’s older, but you know.
Bill 56:47
He wouldn’t know anyway, if you were less than perfect.
Bill 56:52
That’s true.
Bill 56:54
He would think oh, well, she’s pretty perfect. I get fed when I need to get my nappy change when I need to. Things are pretty good.
Ginn Thompson 57:02
He’s the perfect baby, he’s been a joy to deal with. Even through all of this.
Bill 57:11
They say that about the third.
Bill 57:15
Must be true.
Bill 57:17
Because they tune into the world differently, you know, they’re not first, they’re not needy, they don’t need all of the attention. They’re not second and always competing with their sibling, their older sibling to be bigger, better, stronger, or whatever. And mums and dads usually have less time for the third one, because there’s another two that they’ve got to care about.
Bill 57:37
So you fuss less over them. So I feel like the third one has the opportunity to become a little less needy and more self reliant is kind of how I feel about them. I know a few third child’s I’m a second child. And there’s only two of us, my older brother and me. And the second child seems to have that issue, you know, middle child syndrome if there’s a third. So I’m wondering whether you’re noticing that with your middle child has he stepped into the middle child syndrome routine?
Ginn Thompson 58:14
Oh, yeah, he’s like, as needy as they come. He needs a lot. And he wants to do a lot by himself. So you’re trying to give him that freedom. But yet, you know, the perfectionist in me, I don’t want you to try on 40 pairs of pants, because you want to I want you to put on the pants I’ve pulled out for you today.
Ginn Thompson 58:43
So he has definitely fit that role. And yeah, with the third one, you know, I hate to say it, but you kind of don’t care as much anymore as you did about the small thing. So, he’s either going in the middle one for mess, and the first one is my perfectionist.
Pontine Stroke Recovery
Bill 59:06
Yeah. Wow. That’s interesting. So what are you hoping for in the months and weeks to come? What are your aspirations about this whole situation that you find yourself in?
Ginn Thompson 59:24
Well, I kept telling myself, you can’t get back to normal or back to 100%. But you can get close. So I think I thought there for a while I was closer than I was. So my goal is just to try to gain a little bit every day and it may just be walking around the park that’s by my house and not having to think about my foot going the right direction sometimes.
Ginn Thompson 59:59
But that’s a small win. Not feeling like I have recall issues when I’m more tired or more stressed. Or even being able to handle situations with some of my colleagues, and not feel nervous about the situation or feel like they’re looking at me different because I’ve had a stroke now.
Ginn Thompson 1:00:28
So I think it’ll all take a while. But if my doctor had said, what you gained back in the first year is really going to be the most significant progress. And after that, a lot of it will be compensatory. And I set my goal immediately that I was going to try to work as hard as I can in that first year, to gain as much back as possible.
Ginn Thompson 1:00:59
Just so I felt normal, even if I’m not. And then, you know, work to tweak things along the way that still needed work. And just keep working hard. It may be something so simple to someone on the outside, but it’s really significant to a stroke survivor. And I think that’s really important to notice all those small things.
Bill 1:01:24
Yeah, you know, you have to notice the small wins, and you have to celebrate them. And the thing about doctors and deadlines, 12 months, six months, whatever is such a terrible thing to tell the survivor in my opinion, forget, Forget him. Forget deadlines, forget that the first 12 months and all that stuff. It is true and scientifically true that there is a part of the brain that is impacted. That is not part of the actual spot where the injury occurred.
Bill 1:01:26
So it’s called the penumbra. It’s the part after the damage, and the Penumbra is kind of been taken offline. But it’s not damaged. It’s not injured. And it’s been taken offline because of inflammation and other reasons. And then what happens is, the penumbra comes back online the quickest.
Bill 1:02:12
And you notice the penumbra coming back online because things kind of accelerate in their improvement to a certain extent. And it’s obviously different for a lot of different people. And then once the Penumbra is done, doing its healing the part around the damage, then there’s a slower recovery to getting back and rewiring parts of the brain that are that have been taken offline because of the injury.
Bill 1:02:39
So the rewiring is what seems to take a bit longer and the reskilling of your brain in memory recall, for example, or in being able to deal with light or being able to deal with noises and sound and lots of people and all those things. That takes a little bit of time to readjust to for some people, they adjust to it more than others. When you’re neurologically tired, you’ll you’ll be impacted by more than other times.
Bill 1:03:09
For example, I never went to concerts, football matches loud gatherings for many years after the stroke, but I can go to them every so often now 10 years out, and not be as significantly anxious or impacted by it. So the thing that the doctors are talking about is that Penumbra coming back online. And that’s why you why you notice a lot of improvements early on.
Bill 1:03:34
That being said, I speak to stroke survivors every single day who say to me that they’ve had an improvement, 5, 6, 7, 8, 9, 10 years down and even beyond, so you never stop getting better. And if you’re doing other things like looking after your nutrition, and you’re not drinking, and you’re not smoking, and you are doing self care, and you’re working less and you’re sleeping better.
Bill 1:04:03
All of those things come together to create the perfect storm of recovery. And that’s when you start getting these little bits and pieces of wins that perhaps eluded you early on or appear to take longer to get so don’t do deadlines, don’t to by 12 months this is that.
Bill 1:04:26
And if I haven’t achieved that, that’s terrible. And also don’t do by 12 months, that’s the most I can expect and if that doesn’t come well then nothing else will come. That’s it’s not true. So it’s a bit of a lack of clear, explaining by doctors as to what one should expect.
Bill 1:04:51
And my job here is to sometimes try and dissolve those myths of times and deadlines so that people listening and yourself can just be okay with constant and never-ending improvement like you were before you had a stroke, if that’s the kind of personality that you sound like you had.
Ginn Thompson 1:05:15
Yeah, I will, I think that goes back to how the whole process was sort of managed. I mean, you know, they didn’t believe me from the start. So why should I believe them type of thing. You had to have your own experience. And I have read that just the other day, someone six years down the road from their stroke, had some sort of breakthrough.
Ginn Thompson 1:05:46
And I thought, wow, that’s interesting. But, I guess in my head, it’s like, a deadline or not a deadline. But it’s like a point where I can check in and see, okay, what have you done this year, and in a year, when you feel like things are falling apart, I think that’s a really good point in your head to just stop and look around and say, Okay, I have accomplished a ton. And I think I should celebrate that. So even again, just the little things, being able to walk the stroller down the street or something. It’s a big deal.
Bill 1:06:30
Congratulations. On that mindset, I love it. Now, one of the other things that happens, why and why people might recover use of an arm or start to get better with their hand movements or their leg movements. There’s, this thing called learned non-use, it’s when the person’s had a stroke, and that part of their body has gone offline.
Bill 1:06:54
And legitimately because of the stroke, so the arm might not be working. And then what they do is they use neuroplasticity, but in a negative way, so that it unlearned how to use the arm because it’s currently injured and currently not working.
Bill 1:07:12
And then it becomes a habit to not use it because you’re compensating with the other arm and the other hand. So sometimes what happens is the learned non-use is as much of an impact to the person’s arm as the brain injury is. So the significance of both of them can be serious or can be consequential.
Bill 1:07:33
And so then what happens is, for some people, they overcome the learned non use 567 years down the track, because the recovery in the brain has occurred. So now it’s rehabilitation to teach the arm, just how to work again, perhaps not exactly the same way or with as much mobility as before, but in a way that is meaningful and useful and helpful.
Bill 1:08:03
So there’s also that aspect which doctors don’t talk too much about where they assume that the reason why a limb isn’t working is because of the injury to the brain, which is partly true. But for some people, it could be this other part where it’s learned. It’s the if you don’t use it, you lose it kind of scenario.
Bill 1:08:25
And then they start for some reason focusing on it or using it, and it comes back online. So that’s also that. That’s one other thing that other people listening and watching and yourself can consider about what the future might hold. And that might not be the case for everybody. But it might be for some.
Ginn Thompson 1:08:45
Yeah, I was a I was a multi sports athlete growing up. And during basketball, I remember my dad just harping on me to use my left hand to dribble I’m mainly right handed. So when this all happened, and I couldn’t use my right hand, I just started using my left hand for everything and credit to my therapist, they were very strong to say no, you need to use your right hand, use the fork and use all the things.
Ginn Thompson 1:09:17
And I’ve been able to gain the most of that movement back. Not a ton of the fine motor I’m still working on that, but that’s that’s so interesting that that can be such an issue because I can see someone having the same problem as me and not even knowing if it’s a problem.
Bill 1:09:43
Yeah, it is. It’s multifaceted. This stroke recovery thing. It’s really that part of stroke where you need to educate yourself. Like you said at the beginning, you are on your own to an extent and you have to educate yourself, learn from other people that are going through what you’re going through.
Bill 1:10:01
And just see what’s the question everything? I suppose that’s the best way to think about it in that, is this really what’s happening? Or is it possible that something else is happening, you know? And whatever the answer is, or whatever the solution you get to his, well, that’s okay. As long as you’ve worked it out and ruled that out, you could potentially move on from that.
Bill 1:10:26
And you might also learn something that you didn’t know, that was the case, I really want to thank you for reaching out, and going out of your comfort zone as a person who prefers to be an introvert to get on the podcast and share your story and make it so that other people going through what you’re going through, feel like they can relate to somebody and that they’re not going about it alone. I really, really want to thank you for that.
Ginn Thompson 1:10:57
My pleasure.
Bill 1:10:59
And I hope your recovery continues to go well. And, I know that you’ll see a lot of improvements, because you are just very early on in your recovery, there’s a lot of recovery to go.
Pontine Stroke Recovery Is A Marathon
Ginn Thompson 1:11:13
Yeah, I think it’s important. And I have to remind myself this all the time that it’s a marathon and not a sprint through this, and it’ll be probably for the rest of my life. So you just, you got to take it one day at a time and win the day and move on to the next one and see what it brings.
Bill 1:11:36
I feel like you’ve got a real good foundation to have a great recovery, whatever that means or looks like because you know about wins and losses as an athlete, you know about what it means to get back up and try again and improve your form and to keep going and to never give up.
Bill 1:12:01
And they’re really amazing traits that you could apply to stroke recovery. They are, you know, the mindset of an athlete is such a useful mindset to overcoming your own obstacles, the things that we put in our own way, so that we can continue on with our recovery. So I think you’ve got a good foundation for a really successful outcome.
Ginn Thompson 1:12:31
I appreciate that I’m in the mindset that practice definitely makes perfect. They tell you that all the time as an athlete, but I think it’s true in stroke recovery, I think it’s true in motherhood. And, you know, I’ll never be the athlete that I once was, just because I am a different person.
Ginn Thompson 1:12:58
But I think learning to be a different athlete and a different mom and a different person overall it’s kind of fun to challenge yourself and see what you’re capable of becoming. So it’s I don’t want to say stroke recovery is fun, because it’s not but it’s hard work. And it’s so fun to see what you’re capable of.
Bill 1:13:30
Yeah, sounds like you’re up for the challenge.
Ginn Thompson 1:13:34
We’ll try, I don’t really have a choice.
Bill 1:13:39
And on that note, thank you so much for being on the podcast.
Ginn Thompson 1:13:42
Thank you so much for having me.
Bill 1:13:44
Thanks for joining us on today’s episode to learn more about my guests, including links to follow them on their socials and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you would like to support this podcast, the best way to do it is to leave a five-star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill 1:14:08
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Intro 1:14:40
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:14:57
All content on this website at any linked blog, podcasts, or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:15:19
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Intro 1:15:34
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Intro 1:15:59
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1 hr 17 min
August 26, 2022 Pseudobulbar Affect And Stroke – Will Perringwood
Living with Pseudobulbar affect and uncontrollable emotions after a stroke is one of the things Will Perringwood has lived with since the 2013 subarachnoid hemorrhage he experienced.
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Highlights
01:31 Introduction
02:10 Subarachnoid Hemorrhage
07:50 Living An Unhealthy Lifestyle
14:14 Pseudobulbar Affect And Stroke
19:37 Short-Term Memory Loss
25:40 Finding The Right Balance
33:41 It’s About Freedom of Choice
58:46 The Meaning of Disability
1:05:41 Routine To Help Memory
1:16:12 Remembering The Emotion
Transcription
Bill Gasiamis 0:00
So you know the situation with your emotions that you’re not able to manage sometimes. How do other people you met that don’t understand deal with that? because I reckon it would make a lot of people feel uncomfortable at the beginning before they get to know you.
Will Perringwood 0:16
And that’s exactly the right word uncomfortable. Because me, for example, like always the most emotive situations that when it rears its ugly head so for example, when I got married, I mean, I’ve never been so dehydrated in my life. I literally wept throughout the whole ceremony and when our son was born I wept so much.
Intro 0:46
this is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:58
Hello, and welcome to episode 210 of the recovery after stroke podcast if you are a stroke survivor with a story to share about your experience with stroke, and you have been thinking about reaching out to be a guest on the show. But were waiting for the right time to reach out, this is it.
Bill Gasiamis 1:15
If you go to recoveryafterstroke.com/contact you will find a form that you can fill out to be a guest on the show. As soon as I receive it. I will respond with more details on how you can choose a time that works for you. And may to meet over zoom.
Introduction

Bill Gasiamis 1:31
Now my guest today is Will Perringwood, who in March 2013 experienced a subarachnoid hemorrhage that amongst other things has left him with pseudobulbar affect and uncontrollable crying. Will Perringwood welcome to the podcast.
Will Perringwood 1:50
Thank you. Nice to be on here.
Bill Gasiamis 1:53
Nice to have you here mate all the way from the United Kingdom. Which part are you in?
Will Perringwood 2:01
I’m in a place called Leicester which is in the East Midlands
Bill Gasiamis 2:06
Of England?
Will Perringwood 2:08
England. That’s right.
Subarachnoid Hemorrhage
Bill Gasiamis 2:10
Yep. And tell me a little bit about what happened to you.
Will Perringwood 2:15
So in 2013, I was living in a place called Gloucestershire, which is in the southwest of England working as a sports journalist absolutely loving life. And then I’ve been on a night out with a few friends the night before. And I parked my car, bizarrely, really strangely at an old flat that I used to live at, which happened to be located across the road from my work.
Will Perringwood 2:49
Friday night, I’ve been out for a few drinks. And Saturday morning, I thought to myself, I know, I’ll just go for a run and go pick up my car. So I went for a run and went to pick up my car and bizarrely, I just collapsed outside my car. And it was found fitting when old next door neighbor which still to this day, I’ve never ever met before.
Will Perringwood 3:01
But I’m so so grateful to them. And they found me fitting and they rang an ambulance. And the ambulance came pick me up and found that I’d had a subarachnoid hemorrhage, which is a bleed on the brain. And I was rushed to hospital immediately for surgery to have the damage removed from my brain. But the diagnosis was I’d never move the left-hand side of my body ever again.
Bill Gasiamis 3:27
Intense when was that?
Will Perringwood 3:32
That was back in 2013. So that was nine years ago, march 2 2013. A date that’s forever etched on my brain now.
Bill Gasiamis 3:41
And your how big was your drinking session?
Will Perringwood 3:48
I do connect the two because sports journalism was definitely an industry where there’s a lot of drinking involved, say for networking, for connecting with people. And I did go out with a very good friend of mine that night, actually. So there were quite a few drinks shared, shall we say it was a good night.
Bill Gasiamis 4:10
You’re 30 years old, right? So you’ve got no idea that there’s something going on in you that might be putting your life at risk. Was that the first time you realize there was an issue you found out there was an issue? Was there anything in hindsight that gave warning signs?
Will Perringwood 4:34
Not really, no. Because obviously so many appointments, so many hospital appointments and doctor’s appointments afterward, they found or they told me and my family, they found that I was born with a birthmark on my brain and they described it these are their words the ticking time bomb, that at some point in my life, it would just go off just like that, and I would not be pre-warned I’d have no idea when it would happen. And it just happened to be that day march 2 2013.
Bill Gasiamis 5:08
Well, was it an arteriovenous malformation or was it a cavernoma?
Will Perringwood 5:14
It was called a subarachnoid hemorrhage.
Bill Gasiamis 5:17
But the blood vessel wasn’t described any further beyond this supposed what was it on your brain?
Will Perringwood 5:25
So it was bleed on the brain but the medical term is a subarachnoid hemorrhage.
Bill Gasiamis 5:33
But what did they describe it as?
Will Perringwood 5:36
They just described it as a bleed on the brain?
Bill Gasiamis 5:38
But didn’t they say it was something else? They said it was a scar on the brain or something on the brain or a birthmark.
Will Perringwood 5:46
Birthmark on the brain, so potentially, I could have been living with it all my life, just waiting to go off at some points in my life was a birthmark. So it could have been born with it, could be born with a birthmark on my brain, I would have no idea that I was walking around with this ticking time bomb all of my life.
Bill Gasiamis 6:03
I’m gonna give you a bit of because I’m a qualified neurologist and I know these things. Yeah, absolutely. In my dreams. It sounds like it was an arteriovenous malformation. So that’s what I had, I had a bleed in the brain. That was as a result of a blood vessel that was malformed that I was born with, that was a ticking time bomb, that could have bled any time and just happened to bleed when I was 37.
Bill Gasiamis 6:39
So it’s the same story that I get from everybody who’s had an arteriovenous malformation or cavernous angioma, which is also known as a cavernoma. So it’s interesting that they’ve given you guys the I’m going to, quote-unquote, the “dumbed down” version of the description by describing it as a birthmark on your brain. It’s far from a birthmark. I mean, there’s no resemblance to a birthmark.
Bill Gasiamis 7:11
But I suppose it does provide a picture of what the difference between that part of your brain looks like and perhaps another part, but it sounds like it was a blood vessel that was sitting there and some people have them burst many, many years into their lives some very early on in their life that can be properly deadly. And then there is a weird cluster of people that I’ve interviewed that had this issue, who were all in their mid 30s to mid 40s, when it happened.
Living An Unhealthy Lifestyle Before The Subarachnoid Hemorrhage

Bill Gasiamis 7:50
So that seems to be the sweet spot. And I’ve concluded again, because I’m a professional researcher, I have concluded that it’s got to do with our lifestyle, having ramped up to the point of stress excetera. And a lot of other factors coming together in a negative way to create the perfect storm to give this thing, an opportunity for it to bleed. Does that description fit your lifestyle at all? What was your lifestyle like at that time?
Will Perringwood 8:30
I’ve got to say you absolutely hit the nail on the head there. 100% it’s amazing that you phrased it like that it was absolutely spot on. Because in so many aspects, like I was told I was working in a very, very stressful job as a sports journalist, which had been my dream all my life. So I had achieved that big tick. I loved it, but it was incredibly stressful.
Will Perringwood 8:57
So for example, at the time of my bleed, I had worked, I think an estimated 30 days consecutively straight, no day off whatsoever and it’s a very, very stressful job because you’re working to daily deadlines every single day you under the cosh you are under pressure to get everything done.
Will Perringwood 9:17
And so to cope and live and work with that pressure every single day, that is going to have an effect on you. Definitely. So I can definitely see your point about lifestyle. 100% I agree with you that is absolutely spot on. Thank you.
Bill Gasiamis 9:34
I can understand why it’s necessary to work 30 days straight in any career. I know that people do it and I certainly wasn’t a person that worked 30 days straight, but I did work a lot of hours and for many days in a row but never 30 days.
Bill Gasiamis 9:50
So I thought that sports journalism is really cool. You get to go to a lot of sports events. You get to interview your heroes. You get to chase down BEX and see what they’re up to, and all that kind of stuff. Explain to me how it becomes so ridiculous that you have to work 30 days in a row, because clearly it didn’t start that way. Is it you or them? Or was it a combination of both?
Will Perringwood 10:18
I think it’s a bit of both. I mean, I do think and this is absolutely no disrespect to the profession and industry whatsoever. But I do think and whether it’s more this country in Britain than it is in America, I don’t know, because I’ve never worked in America, but it just seems like they take advantage of people like myself, who have a massive love and passion for the industry.
Will Perringwood 10:39
So no, you’re completely right. So I mean, for example, like I have reported at three Rugby World Cups in my life and my career, which is a huge privilege. So for start, I reported at the 2011 Rugby World Cup in New Zealand, which was just a huge, massive experience for me.
Will Perringwood 10:57
And then I had my brain injury in 2013. And I never thought I’d come back from it. I never thought I’ll work ever again. But then I’m so lucky and grateful that my work, were willing to accept me and take me back in 2014, and they started me on a graded return to work.
Will Perringwood 11:16
Start by working a couple of hours a week, and then gradually build it up, up, up, up. And eventually the 2015 Rugby World Cup was around the corner. And I was lucky enough to report on two matches at that, which was just a huge privilege against that was my second World Cup.
Will Perringwood 11:33
And then in 2016, or something called the junior or under 20 Rugby World Cup. And that was in Manchester in England. And I got to report at that. So that was my third World Cup, even though it was horrendous what happened to me in 2013. And the kind of outlook I’ve taken for me, is you’ve got to look at the positives. And positives with me that since my brain injury, I’ve still managed to report at two World Cups, which is incredible.
Bill Gasiamis 12:06
I agree. Absolutely. You sound like Mike Smith, guy who I interviewed on Episode 198, who was a reporter in the United States. And he was doing ridiculous hours as well, just non-stop. And then he had a an issue with his heart that caused the stroke.
Bill Gasiamis 12:06
And that stopped him from going back to that profession, because he did not want to go back into those types of conditions. And he was a reporter who was doing the nightly news reporting, and what he was reporting was a lot of the negative stuff, a lot of the, fatalities and car crashes and all that type of thing.
Bill Gasiamis 12:56
So he didn’t go back to it. But he’s teaching now. And he’s feeling a lot better about the fact that he doesn’t have to work seven days a week and he’s not always on the clock. Did you adjust your hours so that they are more reasonable? Did it go back to what you were doing before?
Will Perringwood 13:20
Well, I mean, unfortunately, in 2017, the chance came up to take redundancy to lose the job. Because with the sports journalism industry, unfortunately, A is quite cutthroat and B is contracting as well. So they’re losing a lot of jobs.
Will Perringwood 13:39
And unfortunately, I lost my job. But again, one thing I’ve learned is not to dwell on the negative but to focus on the positive. And at the same time, 2017 my wife’s teaching contract was coming to an end. And she was eight months pregnant.
Will Perringwood 13:57
So we saw it as a, perfect storm, I think was a phrase you used earlier and it was just a perfect storm of I was not enjoying it, I saw it as the cause of my brain injury. The fact we’re bad start to family, the fact that her teacher contract was coming to an end.
Emotions After Stroke

Will Perringwood 14:14
So we just took the decision just to basically move away from the place we live in, which is called Gloucestershire in the southwest of England, and move down south to the very south coast, which is where my wife is from originally. And moving with her family have our little boy.
Bill Gasiamis 14:34
Awesome you’re an emotional feller.
Will Perringwood 14:42
Well, this is one of what’s called the hidden aspects of brain injury is a part of my brain that was affected a part of the brain that controls emotions. So because of that I often can’t control my emotions.
Bill Gasiamis 15:08
And is crying the one that expresses itself the most? Or other emotions as well?
Will Perringwood 15:15
Yeah, definitely crying.
Bill Gasiamis 15:17
And is that usually when you’re talking about something that’s emotional? Like your little boy? That’s emotional.
Will Perringwood 15:26
Yeah.
Bill Gasiamis 15:29
It’s a pretty good reason to get emotional and cry.
Will Perringwood 15:32
Just my little boy, or my wife those two.
Bill Gasiamis 15:42
And were you an emotional guy before?
Will Perringwood 15:46
Sorry about that.
Bill Gasiamis 15:46
No it’s all cool man. Don’t apologize. We’ve all been there. I know all about it. Don’t worry. Most people listening have been there. And I think most of them try to cover it up or hide it or whatever. Is it difficult for it to express itself in situations where you prefer, it didn’t.
Will Perringwood 16:13
Yeah, definitely. So I mean, I remember there was a television program, which could sound weird, but my sister had watched one night, which was an audience with Michael Bublé. One of the audience members asked him, you know, Michael Bublé, a great international singer, surrounded by an audience all asking questions, and said, you know, like, Michael, you know, on a first name basis.
Will Perringwood 16:48
You sing and you write such emotional songs and such emotional lyrics, how do you sort of hide or control that emotion? Or how do you stop that emotion being released? And he said something like, I sing, or he said to me, like, I find if I sing these things, and it manages to control it.
Will Perringwood 17:13
And that was really interesting, because one of the biggest impacts of my brain injury has been my memory, particularly my short term memory. And again, like this, to throw it a boring statistic at you, but one that I learned that doctors or medicine have only discovered or only know 80%, about the brain, which I find absolutely fascinating.
Will Perringwood 17:36
So therefore, there’s there’s still 20% left to discover for them for modern-day medicine, which just absolutely crazy, it just absolutely baffles me it really does. So how I liken it to is, so therefore they only know 20%, about brain injuries in general as a field. And so therefore, there’s 80% left to discover about them about recovery, about courses, about plight, about everything has to get better so 80% left alone, which is a big number, I think.
Will Perringwood 18:15
Anyway, coming back to Michael Bublé. So one of the biggest impacts to my brain injury is my memory, so my short-term memory is not very good. So I can remember, bizarrely, having worked as a sports journalist for 15-20 years, I can remember obscure, useless sporting information from the 1990s. But I can’t for example remember what I had for breakfast this morning. And that’s the crazy thing about brain injuries people often don’t appreciate the difference between short-term and long-term memory.
Bill Gasiamis 18:49
Yeah, yeah. So if I asked you, what did you have a breakfast, any chance that it will come to you or is it not there until later on?
Will Perringwood 19:01
Well, this is where you have to develop what’s called strategies in speech marks, you have to develop strategies basically to navigate your day. And one thing I have to lean upon very much, so is my phone calendar. So I remember a couple of years ago, so you have to develop a strategy of writing things down.
Will Perringwood 19:19
I remember my wife saying to me, like she’s just randomly going through, well not going through my phone calendar. That sounds wrong, but she was like, I was mentioning my phone calendar, and she was kind of commenting.
Short-Term Memory Loss Caused By Subarachnoid Hemorrhage

Will Perringwood 19:37
Why have you got this written down in your phone calendar? Why you possibly interested in what you’ve had for breakfast, and when you’ve had breakfast? And I said, pure and simply because my brain doesn’t allow me to remember it.
Will Perringwood 19:51
So it’s very, very sad. But every day on my phone calendar I write. Every single meal I’ve had throughout the day. And it came about because I literally could not remember what meal I’d had for breakfast, lunch and dinner, and therefore I wasn’t sure when to eat again.
Bill Gasiamis 20:21
Okay, so you remember to write it down. But you don’t remember what you ate. So nuts, I get what you’re saying everyone’s fascinated about their brain after they realize they’ve got one when they have a blank a brain bleed, or when they have a stroke from an ischemic attack.
Bill Gasiamis 20:45
So it is it’s just completely ridiculous. But I get what you’re saying, I like that strategy that you do write it down. And as a result of that, is that the only thing that you have to strategize to write down, I have a friend of mine, I asked, because I have a friend of mine, who’s 48. Now, when she was 21, she had a aneurysm burst in her brain.
Bill Gasiamis 21:10
And as a result of that, still today, she writes down things every night before bed that she needs to remember in the morning. And she just puts it on her nightstand. And she kind of laughs about it. And she tells us, I still write things down and all that type of thing. And this is what I had to write out that and might be the most bizarre, strange, obscure things.
Bill Gasiamis 21:33
Sometimes she has to make sure that when she wakes up, she knows she’s waking up next to her husband. And it’s just in that moment, just in that moment. Once she knows that in the morning, again, it’s fine. But she did on her honeymoon, they were in the United States in Hawaii, she woke up next to a stranger. And she was losing her shit, not realizing. Now this guy’s meant to be here, and it’s all good.
Will Perringwood 22:02
Now, I can completely understand and relate to that, because one example I’ll pull out is the film The Guy Pearce, film momento. Such a brilliant film, Christopher Nolan directed, it was one of my favorite films, anyway, I loved it. But then when how my brain injury and the whole, I guess the journey or exploration of memory became more and more prominent.
Will Perringwood 22:29
And it just became more and more fascinating about the sort of different types of brain injuries and therefore the different repercussions that you can have of a brain injury. Because I think, whether it’s in America or in Europe, everybody, it’s a bit of a blanket term brain injury, like people think it covers just one thing or one disability or one visual effect.
Will Perringwood 22:52
And it’s such a wide-ranging spectrum of effects. And that’s what’s so amazing about the brain, it’s like depending on whereabouts in the brain, even like the left-hand side, the right-hand side, the front, the back. It just affects you in so many different ways.
Bill Gasiamis 23:10
Yeah, absolutely. It’s not like saying “my hand was injured.” It’s a completely different thing. Saying my brain is injured, which part, where, how severely, how long, it just doesn’t end and then everyone’s lobes, generally doing the same thing. However, some lobes are slightly operating differently at one point than another point while the other person so there’s never, you know, what do they say about strokes? I think they say they’re like snowflakes not one of them are alike.
Will Perringwood 23:46
Snowflakes, yeah.
Bill Gasiamis 23:50
Yeah. So that’s interesting. So what is your new career?
Will Perringwood 23:59
Well, I’m now working in a supermarket, which is not to be critical or downplay, first, I’m just incredibly grateful to be employed, and have any job and have any income whatsoever. And that’s one thing. I’ve definitely taken or learned through my brand-new journey. It’s just gratitude. Because it’s like to be trusted.
Will Perringwood 24:24
To do a job is massive. One word I would kind of use or point out now is closure in terms of like, because like I said, I took redundancy. I chose to take redundancy in 2017 at the time, because all the factors came together at the same time. But because I’m still an ambitious person, and the fire within me of ambition still burns, to try and be a sports journalist. Now, whether that is advisable or not, I don’t really know.
Will Perringwood 25:05
Because I said my wife, very much, there are times when I agree with her about this, she believes that my brain injury was caused by my career, which I completely take on board. Because as we’ve just discussed, you know, having working so many days and so many hours constantly, is going to have an effect.
Will Perringwood 25:23
So she can’t really understand why I’m still chasing this unobtainable dream, if that makes sense. And I completely respect that viewpoint. But still, it’s an individual thing, like you’re still chasing, you can’t really shelve, or put to bed a dream that you’ve always had.
Finding The Right Balance
Bill Gasiamis 25:40
I’m gonna throw my hat in the ring, give you a little bit of my thoughts on that. I know your wife’s concerned, she says, and if he goes back, he’s going to do 30 hours a day again, and he’s gonna work seven days a week again, and he’s gonna get unwell, and he won’t be with us. And it’s like, she’s thinking, well, that’s not worth it.
Bill Gasiamis 26:03
Pretty cool, I get that. And then on the other hand, you’re going, well, it’s my career, it’s my dream, it’s my love. It’s my this my that. And that is legit too. The question is the balance, can you find a balance to do it, and if you don’t do it as a career, maybe you can just become a sports journalist on Tiktok, there’s a ton of people following their dreams on Tiktok in the sense that they’re reporting obscure things, or important things or whatever they want.
Bill Gasiamis 26:33
Some of them are bloody reporting things that are not necessary for humanity to know. But a Tiktok that you’re doing, that expresses your love for one of the sports or for multiple of the sports is a great way to express yourself and do that, and interact with people in that way, at your pace with your own content, without anyone going, “Wow, that’s not good enough, do it again.” Or “this is not enough, do it again.”
Bill Gasiamis 27:05
And you know, the best part about it is, you could do it from your armchair, you could just watch the bloody thing, and then report on what you saw from your TV. And I’m like “how is that?” You know, that would be amazing to be able to do, so that you’re expressing yourself in that creative way that reporters can get to do about your passion without putting yourself at risk. And you just never know what might come of it, I think it’s just a gentle way to do something and keep yourself in the loop of that industry.
Will Perringwood 27:41
And it’s strange. And this is again, connected to my memory issues. Because if I watch a football match, or sorry, a soccer match, or a rugby match on television, I obviously cannot remember what happened or the final score, or who won, for example. And like I said, before I live and die by my phone calendar, I really do.
Will Perringwood 28:05
And I even still, I’ll be watching the game, and I’ll be making notes about who scored first how they scored, when they scored. So I’m kind of doing like a detailed match report in my calendar. I’m just not doing it to be paid. That’s all, but I’m only doing that as again, as a memory strategy kind of thing. But I think what’s difficult is, it’s this classic, what they call looking over the garden neighbor’s fence. Analogy, because my best man, who I went to university with, he is now a fantastic sports journalists.
Will Perringwood 28:37
And he’s doing really, really well. And it’s that classic, you know, looking over the garden neighbor’s fence like, “oh, well look what they’re doing that.” And because we trained at the same time, we got the same qualifications at the same time. And if you think of like two trains that leave the station at the same point, that same time, they’ve just gone on different paths, a different journey.
Will Perringwood 28:57
And it’s very unfair to compare the two situations and say, well, I should be here, I should be at the same point he’s at, because there’s been various differences, you know, such as having a brain injury, but I just think it’s human nature to just compare two similar situations.
Bill Gasiamis 29:14
It’s definitely human nature, it’s not useful in your situation to compare to him. Your gratitude probably serves you better and supporting him in his dreams, and getting him to express himself in that way. And you kind of living a part of your dreams through him would be great.
Bill Gasiamis 29:36
But also, there’s no reason why you can’t convert those memories that you’re writing down into a sports report and just report them into a Tiktok account, like absolutely no reason and I know you’re not getting paid for it, but it’s allowing you to express yourself. I compare myself, I lost 10 years of income. You know, before I was able to get back to work in the capacity that was making me a decent income.
Bill Gasiamis 30:02
My incident, the first one happened in February 2012. And to lose 10 years of income in my prime is hard thing to get my head around because I also sometimes when I’m having a shit day, compare myself to somebody else and go “oh look how far they’ve come and look what they’re doing, look what they’re running and look how much their business has grown.”
Bill Gasiamis 30:33
And it’s such a stupid place for me to be in, it does nothing for me except make me feel worse. And it’s like, I’m kind of doing this, I’m not happy for where they are, because I’m not there as well. And it’s such a terrible thing as if I’m not happy for my mates doing well. And having an amazing business of getting rewarded for the effort that they’ve put in. I was getting rewarded too and I was flying.
Bill Gasiamis 31:01
And thankfully, they don’t have something in their head that bloody caused them to be unwell. I did. And that’s really, I find myself there. But it’s like, it’s not really me, when I get into that state, it’s somebody else who I don’t recognize and I do not like. And I have to remind myself that, again, I’ve got a lot to be grateful for, I made it to the other side, I’m still living with my deficits quite functionally and quite well, they do impact me every single day.
Bill Gasiamis 31:37
And that should be all that I’m focusing on this new version of myself. And, you know, I had this desire to express myself for very many years before I had a podcast. And I was always afraid to say what I thought because people would criticize it. And then I felt like what I had to do was defend myself. But you don’t really have to defend yourself, you just have to speak your truth, and allow that to come out.
Bill Gasiamis 32:15
And if you notice something, bring it up, have the guts to bring it up. And to defend your thoughts from a point of view of like, they’re my thoughts, what you think matters, too, we don’t have to agree. But I do have to express them, especially if I’m expressing them in a positive light. And I’m not just shitting on somebody for the sake of shitting on them, I would never do that.
Bill Gasiamis 32:44
So the podcast allowed me to be that guy that I’m describing to you on Tiktok, it allowed me to be the guy who gets to express himself every single week with people from around the globe, who I’ve never ever would have had the opportunity to meet before, who have got a lot of things in common with me. And it’s bringing me a sense of satisfaction that I cannot describe. And I will never would have had it if it wasn’t for the stroke.
Will Perringwood 33:18
Yeah. I mean, one of the many, many cliche phrases that have come to my mind or that I use is recognizing achievement, or appreciating achievement. So something for yourself personally that you will see as huge, as massive, might not be as big or as important to somebody else.
It’s About Freedom of Choice

Will Perringwood 33:41
As Joe Bloggs in the street, you know the stranger you just met something might not be as important to them but it is huge to you. I mean such as for example, like you know, I was told I’d never walk again, so therefore, I now do quite a lot of running, and in 2018, I ran the London Marathon.
Bill Gasiamis 34:16
That’s awesome. I would never bloody do it, but congratulations.
Will Perringwood 34:23
Thank you. But in the last week or so I’ve genuinely signed up to more half marathons or full marathons. Because it’s that kind of like it’s not just stubbornness. It’s not like somebody saying you can’t do ABC. Therefore you’re going to do it out of spite and stubbornness, it’s not that at all.
Will Perringwood 35:06
It’s about choice or freedom of choice. I mean, I take no pleasure in the fact that it’s gonna sound really arrogant to say, I’ve defied doctors.
Bill Gasiamis 35:26
That’s a good statement mate
Will Perringwood 35:29
By them saying you will never walk again, and I’ve run a marathon. So therefore, I mean, for example, like this last week, I’ve been out for three big runs, you know, sort of 5k 10k. And I say you just appreciate it. So much more.
Bill Gasiamis 36:00
Yeah, I never appreciated running when I could properly run. I did do because of fitness and all that kind of stuff and trying to stay healthy. I did used to run 5K’s every Sunday on the treadmill, because I hated running outside. So when I got to rehab, one of the first things they asked me, was what you wanted to do, you know, what were the goals that I had, and one of them was to run.
Bill Gasiamis 36:32
But my run was to be across the road, so that I don’t get hit by a car. That’s as far as I wanted to run. I never once said I want to run a half marathon or a marathon, or get back on the treadmill. But I know why you appreciate it. Because your legs weren’t working properly together beforehand. And it’s like, man, they do now. So yeah, this is really cool. Of course, it’s cool.
Bill Gasiamis 37:02
And that’s great, I do have a similar feeling of gratitude about all the things that I can do. Absolutely. And I think that’s important. And if you can be grateful, that really helps to shift you from focusing on all the things that happen, that strokes done to you or taken away from you. Because there can be a lot of those. And I think, although they need to be focused on from time to time, I think they shouldn’t be at the forefront of someone’s mind all the time.
Bill Gasiamis 37:41
There should definitely be something that we go to every once in a while, from the perspective of trying to improve the situation. That’s my reason for going to those places. And when I start comparing my life to somebody else’s, I have every blessing. And it’s like, why would I focus on the one thing that they have that I don’t to make myself feel bad about it? It’s nuts. So when’s the next marathon?
Will Perringwood 38:18
Well, I’ve got two half marathons I’ve signed up for which, once you’ve done a full marathon, the half marathon’s nothing, really. But no, it wasn’t just me, like, my sister-in-law, who’s amazing. She ran a marathon for the same charity. And one of my wife’s friends run a marathon. In fact, she ran two, she ran London and try New York as well. So because of me, and that’s not to try to be big-headed. But like three other marathons have been ran.
Bill Gasiamis 38:54
Why are there crazy people?
Will Perringwood 39:00
Like X, Y and Z, thousands of pounds have been raised? Because of my story, because my clients, which is just fantastic.
Bill Gasiamis 39:12
That’s a great way to express gratitude or, you know, the meaning behind your ability to walk or to run. That’s a great way to channel that energy. And to make it not only about you, but also about other people. That’s awesome. I love it.
Will Perringwood 39:35
It’s this phrase my wife came up with which, if I’ve said it already, then I apologize for repeating it, which is, “don’t, focus on the positives. Don’t dwell on the negatives.” That really occurred to me because it’s that kind of haves versus have nots kind of thing.
Bill Gasiamis 40:01
Yeah. So you know the situation with your emotions that you’re not able to manage sometimes. How do other people that you’ve never met that don’t understand deal with that? Because I reckon it would make a lot of people feel uncomfortable at the beginning before they get to know you.
Will Perringwood 40:25
And that’s exactly the right word, uncomfortable. Because I mean, for example, like, it’s always the most emotive situations that when it rears its ugly head, so for example, when I got married, I mean, I’ve never been so dehydrated in my life, I literally wept throughout the whole ceremony.
Bill Gasiamis 40:51
Is that a risk of being highly emotional, you get to dehydrate from crying?
Will Perringwood 40:56
So it’s anything to any emotive situations like getting married, which is obviously a once-in-a-lifetime situation, oh, and when our son was born, I wept so fast.
Bill Gasiamis 41:15
I hope it is a once-in-a-lifetime thing for you, mate, because I know people that have been married four times. And could you imagine how much a liquid they would lose if they’re in your situation?
Intro 41:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 41:51
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 42:10
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.
Will Perringwood 42:31
Really interesting you raise to other sort of side tangent because like we as brain injury survivors, I don’t know if you find this Bill, but we become focused and almost bordering on obsessed with certain things like statistics or facts that you learn or hear about brain injuries. And my current one at the minute is that 85% of marriages involving brain injury break down, I seem to be very, very focused on it. And that is just absurd.
Will Perringwood 42:59
I mean, like, we’re always hearing in the media or TV programs about how 50% Or one in two marriages don’t work, whether that’s in America or the United Kingdom or wherever. And that’s high on its own, then you throw in a brain injury involved until it shoots up to 85%. That’s just easy.
Will Perringwood 43:18
And once I had heard that statistic, that fact, it then made me look at all the people I’ve met through my brain injury journey because this fantastic charity that I ran the marathons for called Headway UK, the national brain injury charity who are amazing. All the brain injury survivors I met through them.
Will Perringwood 43:40
I kind of, it sounds patronizing, say I kind of looked around the room, I love talking to them all. But a lot of them were sort of telling me the tales of broken marriages or separated marriages and just kind of thought it’s just such a shame.
Bill Gasiamis 43:57
Yeah. I don’t know, I have a theory on that, is that the marriage is probably on the way out. Anyway, it’s just that the incident that needed to trigger it hadn’t happened yet. And then it happened. And it’s like, I met a few people who have gone through that over the years as well. And one of the examples was, this wasn’t somebody who I interviewed.
Bill Gasiamis 44:23
One of the examples was that, that person who left the stroke survivor, the wife, left because he was an asshole anyway. And she was sure as shit not going to be around to wipe his ass for him. Her words and that’s like, okay, I can kind of grasp that, I can kind of get that situation. And then the other unfortunate situations of it being so triggering to the spouse.
Bill Gasiamis 44:58
That the spouse doesn’t have the the resources, the skills, the tools, the resilience, to hang around and deal with such a dramatic situation, because it would negatively impact their life and they decided to leave. And I think that that’s a great reason to leave a marriage. Because if you’re going to be that bad at going through what the other person is experiencing, you’re not going to be offering any support or help, you might as well not be there.
Bill Gasiamis 45:27
So some of it, I think, is positive, absolutely positive. Although it appears not ideal. The last thing you want to be is in a marriage where one person resents the other, and then one person doesn’t have the skills to support their partner or to manage to deal with it themselves, you know, so many marriages are not dealing with day to day life. Imagine throwing in a brain injury, and all the stuff comes with that.
Bill Gasiamis 46:13
And if some people don’t see it, as their responsibility or their right, or their role to be the caregiver for another person for the entirety of the rest of their lives, and putting everything that they’ve ever dreamed of on hold. So, at the beginning, I was like, yeah, I was very shocked by the statistic. But I was also concerned about how can somebody be so harsh or so cruel? Or, but sometimes, I think it’s the best thing that they can do is decide not to hang around there.
Will Perringwood 46:54
I mean, I think not just us as brain injury survivors, but the general population just don’t appreciate what, how can I phrase this, the strain it will put on a marriage, because, for example, the way it was explained to me was you literally change overnight into a different person.
Will Perringwood 47:13
So there’s a great online, i think it’s another podcast, or something else I follow called the identity thief, really interesting blog. So you have a brain injury and your identity is stolen. And I can completely relate to the fact that somebody, male/female, has fallen in love with a certain person. But then suddenly, overnight, that person is literally dead, or is literally not there anymore.
Will Perringwood 47:38
And they wake up the next day, and there’s a pretty completely new person that they have to not only get to know, but somehow try and find a way to fall in love with again, and it’s just a complete different person. So I can completely understand why so many marriages have failed involving a brain injury because it’s literally a different person.
Bill Gasiamis 47:58
Yeah. And the person on the other end of it, the person who hasn’t had that injury has to grapple with their own identity, the identity of the person who’s changed the joint identity of what it was like to be married, and what that meant, and what their combined dreams were and all that type of thing. Yeah, it’s such a tough thing. And I’d like to make people feel better about it.
Bill Gasiamis 48:26
If people listening and watching this have been through a divorce after the stroke, hopefully they haven’t taken it personally, it says more about perhaps the strength of the marriage anyway. And then maybe it says a lot about where the other person was at. So I think for some people to leave, I feel like it’s like a selfless decision as well, because they’ve put themselves first.
Bill Gasiamis 48:58
And so if you caregivers do that, and then they become collateral damage. And it’s so terrible, to be involved and to see people who need help and support and their caregivers pass before them or become mentally unwell as a result of what it is that they have to step up, supposedly to do. So marriage is one of those things I know that in the Greek faith, the Orthodox Christian faith, you know, we don’t get up and say, till death do us part or any of that stuff.
Bill Gasiamis 49:39
And I don’t know if that phrase till death do us part makes it harder on people who have gone through a marriage ceremony that makes them say that during the vows, because that’s all they say. They just say till death do us part, they don’t say till death do us part and for disability and for all this other stuff. I feel like that those words can potentially impact people to stay in a marriage where perhaps they would rather not be there and then they become a lesser person.
Bill Gasiamis 50:22
And that impacts everybody negatively. I’m not saying that in my marriage just because I didn’t say till death do us part, we didn’t take it as seriously. But I just feel that adds another layer of complexity, although, in our situation, we got married for the same reasons. We just didn’t say those words, we didn’t have to say them because it’s not part of our ceremony.
Bill Gasiamis 50:56
So it’s a real, it’s a conundrum man. And I’m just hoping that people feel okay about doing the best that they can with the resources they have, and the information they have at the time, you know, you cannot, not everybody can navigate this beautifully. That’s just not possible.
Will Perringwood 51:14
I mean, I’ll just pick up on one word in particular, which is spot on, which is caregiver. Because it’s about roles, the roles you play in life and the roles you play in a relationship. And suddenly, you’ve gone from being a, you know, for example, if it’s a female, girlfriend, or fiance or wife, and suddenly you’re thrust and you’re thrown into this chasm this world, you’re now suddenly, not just a girlfriend, fiancee, wife, you’re now a caregiver.
Will Perringwood 51:43
And that is such a massive, heavy term, that is, where you’ve literally got to the responsibility lies with you to look after absolutely everything to do with this other person. And sometimes this other person, your boyfriend or husband might be older than you, for example, they might be more successful than you, they might earn more money than you.
Will Perringwood 52:02
But suddenly you’re the caregiver of that person, you’ve got to look after them in every single aspect of life, which is quite daunting prospect. And that’s going to weigh heavy upon the caregiver, I think.
Bill Gasiamis 52:19
Yeah, absolutely. It’s a statistic 85% of marriages, you know, that don’t work out. But I think, we can make statistics look as bad as we want them to, and we can make them tell the story that we want to tell them. I think that’s a far more deeper and complex conversation about that. One worth having but a statistic generally, that seems that high in potentially being a negative thing.
Bill Gasiamis 52:52
I think it’s still worth sort of paying attention to and pricking our ears up, you know, and kind of getting us to the point of saying, Okay, why is that? How can we improve that? Do we need to improve that? I don’t know. It’s such a complex topic. I don’t think there’s enough resources, governments wouldn’t have the resources to allocate to every illness that humans can have, and say, okay, cancer, guys, they get this much for marriage counseling, and stroke survivors, they get this much for marriage counseling.
Bill Gasiamis 53:34
I don’t think there’s enough support in any way, shape, or form. And the worst part about it is the stroke survivors usually don’t have enough resources to put towards all of the services that they need to get through or to come out of it less and less impacted, I suppose. How can you? For me, it was such a terrible way for me to find out that I am incapable of managing my day-to-day.
Bill Gasiamis 54:11
And now I’ve got to manage my day-to-day with stroke. And I say I mean, I was incapable is because all I knew was how to work a lot of hours. And I hadn’t yet mastered the art of being a better father, being a better husband, being a better son, a better brother, a better friend. It was something that I aspired to, but I wasn’t doing a lot of work to get to that point because I didn’t know where to start.
Bill Gasiamis 54:41
And I felt like I was lacking some life skills at 37. I was trying to improve myself and be better. But then when you’re lacking just life skills, generally speaking, because you’re still a bit naive or wet behind the ears or are afraid to take on new challenges or do things differently. And then you’re thrust into the stroke world, then you really work out how inadequate you are and how unable you are to navigate life because no one’s ever taught how to navigate stroke. And God forbid they ever get to find out.
Will Perringwood 55:19
I don’t know if this is a phrase that’s used much in America. But over here it gets used a lot in ranger, which is sink or swim. So you literally get like you say, you get thrust into a situation and you have the choice. You can either sink or you can literally swim you can either thrive, well one thing we came up with was thrive not just survive.
Bill Gasiamis 55:45
Yeah, yeah. That’s a great thing to aim for. Something a little bit about your son. I’ll see if I can make you cry a little bit more.
Bill Gasiamis 55:53
I knew I could get you to cry. I’m so mean. How old is he?
Will Perringwood 56:11
Well it’s his birthday in two days.
Bill Gasiamis 56:16
Wow, that’s awesome.
Will Perringwood 56:18
He’s gonna be five.
Bill Gasiamis 56:20
It’s such a cool age 4 5 6. It’s such a brilliant age.
Will Perringwood 56:27
But it’s the thing like the brain injury is, how can I express this correctly? Brain injury is obviously the hardest thing you’ll ever go through. But then that is met or confronted with like the best thing which is parenthood. And being a parent is hard enough for anybody. But to do it with a brain injury is even harder. And like, I’ll give you the most obvious example, which is changing nappies.
Bill Gasiamis 57:13
Uh huh. Yeah. You got out of it, right?
Will Perringwood 57:15
Well, no, my wife was incredible. I mean, I would say hand on heart, I’m sure she’d agree, she changed the majority. But I did my best, you know, the messy nappies. I never shied away shall we say. But it was I mean, because, and this is another thing about brain injuries is how they affect you in two different ways, both the mental or hidden ways, or the physical ways.
Will Perringwood 57:49
And it’s, again, what I found really interesting, like, this is absolutely no disrespect to anybody else that’s had a brain injury. But like, if you’re in a wheelchair, or if you have a cane or something like that, somebody can look at you or see you.
Will Perringwood 58:04
And they can see there’s clearly a physical disability, where someone like me, and to use this phrase, again, Limbo, or purgatory, where you’re in the middle of two worlds, but in the middle of the able bodied world, and the disabled world, and you’re right down the middle of it of like either one or the other. So it’s like, this word, with such a heavy word that we’ve discussed a lot, which is disabled.
Will Perringwood 58:30
And my wife’s often said to me, and we’ve talked about it, it’s like, do I consider myself disabled? And it’s like, because it’s such a big definition. It’s really difficult to sort of say, and that’s not even taken into the consideration, you know, the governmental benefits aspects and things like that is purely a personal thing.
The Meaning of Disability
Will Perringwood 58:46
Like, do I consider myself disabled? And it’s like, well, on paper, yes, because I’ve technically had a brain injury, I’ve technically had a stroke, as in I’ve had a blockage to my brain, there’s been a blockage of oxygenated blood reaching my brain, which is on paper, the definition of a stroke.
Will Perringwood 59:05
And so, again, the definition of disability is that, but it’s just like maybe it’s a personal thing. I don’t know maybe it’s just me. Because it’s such a heavy-loaded word or heavy-loaded term. It’s all of that that encompasses and incorporates.
Bill Gasiamis 59:23
Yeah, the thing about the word disability, it’s just inability. And and that’s the part that I don’t like about it, because there’s lots of people who are very, very abled in wheelchairs, you would know, participating in sports all over the world.
Bill Gasiamis 59:41
There’s an amazing lady who I’ve interviewed on the podcast, who is a somebody who experienced a stroke, and she lives with left side or right side, one on one. Well, perhaps it was hemiplegia, I don’t know exactly the term, but it means that her left leg or one of her legs, I’m going to call it the left because I forgot which one it was, her left leg and her left arm, she’s unable to use them fully.
Bill Gasiamis 1:00:19
And yeah, she’s a powerlifter, she doesn’t use that side of her body to lift these ginormous boulders and pull trucks, and semi trailers and all that kind of stuff. But she’s doing it. So she has, if you look at her, you know, the definition of disability applies, you’d be able to say, well, you know, she appears disabled.
Bill Gasiamis 1:00:50
But she’s far from that she has found a completely different way to do that. And then the wheelchair basketball guys, or the wheelchair tennis guys and girls, and even the athletes in the Paralympics, that run, track and field and all that kind of stuff, that whole bunch of people are so abled.
Bill Gasiamis 1:01:15
And yet, the word the best word that we came up with as a society is disabled. So I but I know what you’re saying about where you sit, you sit from that space where people recognize that you’ve got a challenge, and you’re struggling with a physical limitation.
Bill Gasiamis 1:01:38
And that other place where you appear like you don’t suffer from a physical limitation, like as if the physical limitation is the only thing we can suffer from. There’s also that mental limitation that people experience in life, generally speaking, you know, through mental health issues. And then what a stroke could do to somebody’s mental state.
Bill Gasiamis 1:02:04
And they’re invisible disability side of that is the part that I think you’re describing, it’s that we, I appear normal on the outside, and everyone concludes, or assumes that I am. And that’s okay. But I live with my deficits every single day, just nobody can see them.
Bill Gasiamis 1:02:27
That’s pain on my left side, that’s tightness. That’s a limp when I get tired, and not on a limp that anyone can see only the one that I can feel, and notice it dragging me to the left. And I have lately, I’ve become aware that I have a vision issue, a very small one, which my left eye does something weird, sometimes at certain amounts of sunlight, when I’m wearing sunglasses.
Bill Gasiamis 1:02:55
It kind of flickers in the top left-hand corner, and it makes my eyeball feel weird. I’ve only just maybe now associated it to perhaps it’s part of the left side deficits that I have. And that’s how it’s being expressed in my eye. So it’s a real conundrum is does it really matter that people don’t understand and that we have to re-educate them all the time? Do you try to re-educate them? Do you try and bring people on board to get a grasp of what you’re experiencing? Is that necessary?
Will Perringwood 1:03:35
Well, this is one of the reasons why we did I mean, I started a blog. I mean, I’m far too old to understand or really know what a an online blog is really, I was never really there was never really my thing but because my wife who’s younger than me.
Will Perringwood 1:03:50
And a lot of cooler than me, you know she has a finger on the pulse of this modern, I guess technology, whether it’s online, whatever, and she really into a blog and vlogs, which is fantastic. She encouraged me to start a blog, which was great.
Will Perringwood 1:04:27
Because of my memory issues, and like a touched upon before that I couldn’t remember that day. And we do this thing where like, we’d get to the evening, and we get into bed and kind of looking back on the day that it just occurred.
Will Perringwood 1:04:42
And as strange as it sounds. It’s really difficult to understand or comprehend for anybody that doesn’t understand this world of brain injury. I could not remember, like we said before I couldn’t remember what I had for breakfast. I could remember much of that day.
Will Perringwood 1:04:54
So she encouraged me to do an online diary. And that’s how it started basically became an online diary. And also because we were living the part of the country that was far away from my family, and they’d often be ringing us or contacting us and saying, Well, what have you been up to this day? What I’ve been up to recently, and it was just like, no disrespect, it was like a really easy way of saying, well, have a look at the blog.
Will Perringwood 1:05:23
It’s a good idea. If they wanted to find out then look at the blog. And it’s a good way for them to touch base with us in a way. But no, I mean, it also helped me because another phrase that was stressed upon us by doctors and specialists with brain injuries, love routine.
Routine To Help Memory
Will Perringwood 1:05:41
So your your memory is really poor. But what helps it is by having that structure having that routine, and like I was always somebody that I wouldn’t say our rejected routine, but it’s like, for example, like, I didn’t like having the same meal every Monday night, every Tuesday night.
Will Perringwood 1:06:00
I like to have a bit of variety. Well, I wouldn’t say routine was boring, but I wouldn’t say I embraced it as much as I do now whereas now is crucial. So I do tend to be like, Oh, what did I have a breakfast? I can’t remember, therefore have the same thing for breakfast every single day, because therefore it trains your brain into remembering what you’ve had for breakfast, because it’s that routine again.
Bill Gasiamis 1:06:27
I see what you’re saying. So your blog is From Reporter To Supporter or is that the one?
Will Perringwood 1:06:35
Yes fromreportertosupporter.com.
Bill Gasiamis 1:06:37
Okay. I’m trying to bring it up. It’s not coming up.
Will Perringwood 1:06:45
No, we stopped it a few years ago. And basically when other things took over, like becoming parents. It was a great way of chronicling or detailing our lives and my life with a brain injury. But it got nominated for an award which we was blown away for because we never went into it to search or seek out awards or recognition.
Will Perringwood 1:07:09
It was just purely an online diary to keep track of my memory really, any attention to you the word we got from it was hugely appreciated. It really was. I really enjoyed doing it because I struggled to remember what I was doing each week. It was like, if I did the same thing every Monday, then that somehow got ingrained into my brain.
Will Perringwood 1:07:33
So we used to set aside whether it was Monday or Tuesday became like write my blog day kind of thing. And that became set in the routine it was those little strategies or techniques was really, really helped with my memory.
Bill Gasiamis 1:07:44
Yeah. So me, suggesting that you get onto Tiktok and do a Tiktok thing. That means you actually didn’t know what I was talking about earlier. You got no idea what Tiktok is, if you don’t even know what a blog is, you wouldn’t know what Tiktok is. You don’t do social media, do you?
Will Perringwood 1:08:04
No, I do social media. But I would say at the age of 39, turning 40 this year, I’m far too old for Tiktok.
Bill Gasiamis 1:08:13
You know, I get what you’re saying, you don’t have to do the other things that other people do on Tiktok, but I love what you’re saying I think you’ve got a lot to offer is what I’m saying, you’ve got a lot to offer. And the fact that you’re a reporter and you have a way with words anyway. So you’d be able to express things that other people can’t express or don’t know how to express as effectively as you, you’ve got that skill. Were you a live TV reporter? Were you a newspaper reporter?
Will Perringwood 1:08:43
I was a newspaper reporter. That’s very kind of you, the things you said. That’s very appreciated. Thank you.
Bill Gasiamis 1:08:53
Yeah, absolutely true. I mean, I say that because I’ve started to write a book recently. And I realized how terrible I am at putting things in words. It’s not that I don’t know how to express myself, it’s that I can’t concentrate long enough to put a good effort in on a daily basis, so that I can have it done by a period of time. I can’t meet a deadline if my life depended on it. But I’m seven chapters into a 10-chapter book.
Bill Gasiamis 1:09:19
It’s going to get edited and read by other people, and they are going to help me out with it because there’s no way I can do it on my own. And that’s cool. That’s all good. But I learned a lot because I now read books. And when I read, I’m not reading as a reader. I’m reading them as an author to see how other people have written.
Bill Gasiamis 1:09:44
And I learned something interesting about Hemingway and how he revolutionized the world of books by providing a similar approach to writing a book or telling a story to the same way that he used to write for a newspaper because he was a newspaper reporter. And he would use the same format of writing a newspaper article, he would use that for writing a book.
Bill Gasiamis 1:10:12
And that made the book extremely easy to read, extremely easy to understand, and engaging because his words and sentences were all short, sweet, and to the point. And I think he described it as there was never a wasted word in his books.
Bill Gasiamis 1:10:33
And one of the things that he did was he would go back, and proofread and read and reread and rewrite again and again and again, until it was just a really amazing combination of passages to express what it was that he was trying to express about his character, or about any particular scene.
Bill Gasiamis 1:10:59
So I think what I’m saying about you is that you would have that ability to really get a message across whatever that message was. So when you’ve got nothing better to do, and you’ve got heaps of time up your sleeve, maybe get back onto the world of social media or blogging, you know, who knows?
Will Perringwood 1:11:18
Yeah, definitely, I’d love to do that. Because like, for example, so many journalists, newspaper journalists, go on to become authors. So for example, like my favorite writer was George Orwell who wrote 1984. And he started off as a journalist for the newspaper in this country called the observer in the 1940s. And yet, he went on to be an author, as well do 1984 and do Animal Farm, and I’d say he’s always been my favorite writer as well.
Will Perringwood 1:11:43
And I think when you have that skill set of writing of learning how to write, then it’s obviously gonna lend itself or transcend itself to another world, such as writing books, and I would love to write. This was kind of my idea for a book. And this, if it sounds stupid, by all means, say it’s stupid. But like, I was always really interested in the kind of the world of brain injury in terms of like, there’s a patient in a bed.
Will Perringwood 1:12:11
And yet, there’s this whole world going on around them. So there’s like a family and friends playing on this idea of, you know, brain injuries don’t just affect one person, they affect lots of people. And yeah, all these people around this bed, all these lives going on. And I liken it to the planets in the solar system, how they’re sort of circling or orbiting the sun, and the sun is like the patient.
Will Perringwood 1:12:34
And that’s not to be sort of big headed or egotistical or anything like that. But how all these paths are going on around. And they’re all following and treading these paths. And I find it really interesting. There’s always sort of lines or train lines of journeys are going on.
Bill Gasiamis 1:12:49
I love it mate. I love it. I’ll tell you why I love it. Because it’s exactly what I’ve thought about a lot of times how life still occurs around the stroke survivor, regardless of what they’re going through, and how terrible their time is. Life doesn’t get to go on hold and you don’t slow things down. Things just get remain frantic. And they continue around you.
Bill Gasiamis 1:13:12
And I say that because we had that experience, I had a bleed in 2012 in February, and then I had one in March 2012. And then in 2014, I had a third bleed. And that bleed led to my brain surgery. And two weeks before my brain surgery. My mother-in-law passed away.
Will Perringwood 1:13:33
Ah, so sorry.
Bill Gasiamis 1:13:35
Yeah, thanks. So it’s that thing that you just described is that thing that I’ve thought of, a lot of times, it’s how in the periphery, people are still going through life every single day, the ups, the downs, the joys, the sadness. And it’s often an opportunity missed to share what it is that they’re going through while dealing with the stroke survivor.
Bill Gasiamis 1:14:10
Because you’re coming from a Greek family, we had 75,000 People that hospital every single day that I was unwell calling, ringing, checking in, and then going back to their daily lives. And then at the same time having me in their thoughts all the time. And then having my wife in their thoughts all the time and then my children and it’s exactly what you described.
Bill Gasiamis 1:14:35
The idea that you described in my mind is what I’ve often contemplated is how do other people coexist with a stroke survivor in that moment, and I think it’d be a brilliant story to tell
Will Perringwood 1:14:57
Or we should work on it together if you’re up for it.
Bill Gasiamis 1:15:00
I’m up for it. I’m not sure what I’m going to offer, but yeah, you tell me and I might be able to assist let me get through this book, which I’ve been writing for about a year now. And it’ll be done soon. And I hope that when it’s done, it’s really going to be successful not from the point of view that it needs to make money that I feel that it’s actually valuable.
Bill Gasiamis 1:15:29
And it’s good to read, and it’s worthwhile and that somebody’s going to pick it up and go, “Oh, my God, what a great insight.” And as a result of that, it supports other stroke survivors is the main reason why I wrote it, you know? And once that’s done, you never know, I might take you up on that offer. We can co-write something or create something, that’d be lovely. How good would that be?
Will Perringwood 1:15:29
That’d be brilliant. Because it’s kind of the voice of strokes or brain injury survivors coming from brain injury survivors? Who’s gonna know brain injury better than brain injury survivors themselves?
Remembering Emotions After Stroke
Bill Gasiamis 1:16:12
Yeah, I completely agree. So tell me about as we come to the end of this podcast episode, tell me about your strategy after this interview. So we’re going to record this interview. And then we’re going to edit it and I’m going to get it up in a couple of weeks, by you’re going to remember that this was recorded. And will you listen back to it, to remember what it was that we discussed?
Will Perringwood 1:16:29
I’m gonna have to because for example, with all the best intentions, I’m sat here right now with a pad of paper and a pen, fully intending to write notes on everything that’s going to be said tonight, but for some reason, I’ve just not felt compelled to write anything.
Bill Gasiamis 1:17:02
Yeah, maybe because you’ve got a recorded version of them.
Will Perringwood 1:17:08
I guess that’s true. But like so when I look back on my days from the day before, I’ll again live and die by my phone calendar. So I’ve had a pretty full on day today, which has been fantastic. As I said to my mum earlier, I love having busy days. So I’d rather be busy than not busy. I’d rather be doing stuff than not doing stuff.
Will Perringwood 1:17:28
And so I will look back on my phone calendar tomorrow and see oh, I had a podcast interview last night. That was really cool. You see the event in your calendar, but what it doesn’t convey is say, for example, feelings or emotions. So it’s pretty blank, you know, oh, podcast interview, 10 o’clock till 11:15. But I’m tempted to write in now actually, when it’s finished and say, I really enjoyed it I had a really, really good time. And that’s where the kind of blurring of the lines or the black and white is interesting, because it doesn’t convey emotion.
Bill Gasiamis 1:18:05
It’s just matter of fact, there was a podcast interview that we participated in. So when you hang out with friends, at the local pub, or at dinner or at a restaurant, do you take a pen and pad with you there as well?
Will Perringwood 1:18:21
When I have my phone, I do tend to write a lot of phone notes, even if it’s just conversations or jokes inside jokes, or a lot of it is like dates not anniversaries but like if I need to remember something, I will write it down in my notes in my phone notes.
Will Perringwood 1:18:40
And like, again, it’s something my wife picked me up on before about why have you written this phone note about this? It’s so irrelevant, but in that particular moment, it may have been relevant or important to me, I won’t be able to explain why it is important. But in that moment, I felt it was.
Bill Gasiamis 1:18:58
Yeah, I love it. Absolutely love it. I’ve absolutely had a blast chatting to you get to know you. And hearing your story. Thank you so much for agreeing to be on the podcast reaching out. And coming on man. It was really cool to have a chat with you.
Will Perringwood 1:19:17
Thank you. I really appreciate it. I hope people find it useful.
Bill Gasiamis 1:19:20
I’m sure they will. Absolutely. We spoke about some seriously deep stuff. And we spoke about some stuff that wasn’t so serious. So I think there’s going to be something there for everybody. And best of luck for your son’s birthday celebration in the next couple of days and is it going to be a big party?
Will Perringwood 1:19:44
Well, we’re all going down because they live in the south coast and we live in the Midlands. A lot of my family we’re going down and on mass about nine or 10 of us are going down so we’re gonna bombard them with so many people and I’ve got literally just to my right now I’m just looking at the pile of birthday presents I’ve got wrapped for him.
Bill Gasiamis 1:20:08
He’s getting a pile of birthday presents.
Will Perringwood 1:20:11
And it’s all dinosaur related cuz he loves dinosaurs.
Bill Gasiamis 1:20:15
Awesome mate. Thank you so much for being on the podcast Will, I really appreciate it.
Will Perringwood 1:20:19
Thank you.
Bill Gasiamis 1:20:21
Thanks for joining us on today’s episode to learn more about my guests including the links 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 is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:20:44
And if you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe and hit the notifications bell. Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier and that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Thank you again for being here and listening or really appreciate you and see you on the next episode.
Intro 1:21:16
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.
Intro 1:21:33
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:21:50
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes, or as a substitute for the advice of a health professional.
Intro 1:22:11
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:22:25
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 in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.
Intro 1:22:48
If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Pseudobulbar Affect And Stroke – Will Perringwood appeared first on Recovery After Stroke.
1 hr 25 min
August 22, 2022 Living With Fatigue After Stroke – Carolina Aguilera
Living with fatigue after a stroke is how Carolina Aguilera describes life at the moment. A previously undiagnosed AVM was behind the brain hemorrhage that bled when she was just 26 years old.
Instagram
Highlights:
If fatigue is the thing stopping you doing everything else, I recorded a session on the three changes that made the biggest difference to mine: 3 Things That May Improve Fatigue After Stroke.
01:17 Introduction
01:51 Arteriovenous Malformation (AVM)
05:59 Life Before AVM Rupture
16:23 Thinking About Mortality
29:22 Managing Fatigue After A Stroke
44:55 Managing Your Emotions
57:43 Renewed Faith
Transcription:
Carolina Aguilera 0:00
I hate the fatigue. It’s the one that is leading my life. So there is no other option here. So sleep is the only thing that is gonna recharge. So now I do need nine hours of sleep. And it’s not necessarily a priority, but it’s the body, it’s the one that is asking for it. So there’s no other choice here.
Intro 0:30
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:43
Hello, and welcome to episode 209 of the recovery after stroke podcast. If you are a stroke survivor have a story to share about your experience with stroke. And you have been thinking about reaching out to be a guest on the show But were waiting for the right time to reach out? This is it.
Bill Gasiamis 1:00
If you go to recoveryafterstroke.com/contact, you will find a form that you can fill out to apply to be a guest on the show. As soon as I receive it. I will respond with more details on how you can choose a time that works for you, for us to meet over zoom.
Introduction
Bill Gasiamis 1:17
Now my guest today is Carol Aguilera, who in September 2020, was only 26 years old when she experienced the bleed in the brain. It was a previously undiagnosed arteriovenous malformation that was behind the cause of the brain hemorrhage. Carol Aguilera welcome to the podcast.
Carolina Aguilera 1:40
Thank you so much. Nice to meet you. Thank you for having me.
Bill Gasiamis 1:44
My pleasure. Lovely to meet you, too, thank you for reaching out. Tell me a little bit about what happened to you, Carol?
Arteriovenous Malformation (AVM)
Carolina Aguilera 1:51
Okay, so maybe two months after my 26th birthday, I had the rupture of an aneurysm. So, yeah, that happened. And well, it was in the middle of the pandemic. So that was also great for everything that happened. And well, it turns out that I had a malformation that I didn’t know about.
Carolina Aguilera 2:18
So with everything that was going on in my life, the pandemic work life, my body couldn’t handle it anymore. So I suffered a rupture. And at that time, I was just feeling the headaches, nauseous. And I passed out, and then 20 days in the hospital, amazing surgery, great time.
Bill Gasiamis 2:49
So you had bad headaches? How long? Did you have the bad headaches before you actually knew there was something wrong?
Carolina Aguilera 2:59
Well, my friends told me and my family that I complained like two weeks before about headaches, which I thought it was maybe just a regular migraine. I’m just taking ibuprofen, something to kind of pass it through. And while that was happening, I never thought it was something else. So we didn’t even go to the doctor. Just the quick fix, take something for it and move on I guess.
Bill Gasiamis 3:27
Yeah. And how bad were you before you went to the hospital? To what extent had the condition deteriorated before you went and got help?
Carolina Aguilera 3:37
Well, no one knew. It was just in one day that I had a migraine. I thought it was because I haven’t eaten lunch at that time. So it seems like maybe it’s just because I haven’t ate anything. So I went for lunch. And well I didn’t even get to my bedroom. I just passed out in the hallway.
Carolina Aguilera 3:59
And then they needed to call the paramedics because I was out. And then on the same day, we have the intervention, the blockage of the rupture, and the brain surgery all in one day. So I didn’t have time to go back and forth. Look for a possible diagnosis. It was just spontaneous. Yeah. Immediate.
Bill Gasiamis 4:24
Which part of the world do you live in?
Carolina Aguilera 4:27
I’m actually based in Panama. So you know that little land that connects North America and South America. There I am.
Bill Gasiamis 4:35
And is that a place where the medical system supports you? And you can get good medical care?
Carolina Aguilera 4:49
Not really, the public system is not that great. And again, it was in the middle of the pandemic so if we weren’t going to choose for a public solution, it was just out of possible hands. So I was really fortunate that, first of all, I was at home. So we were able to do something.
Carolina Aguilera 5:12
At the beginning, of course, we didn’t know anything about my possible conditions. And I was also lucky because my neighbor was at home. So he was able to help with a diagnosis. He’s a doctor. So he was taking out options like a diabetic shock or something else. So they were able to diagnose us really fast what was happening to me.
Carolina Aguilera 5:39
And other thing, because in my country, we choose for a private ambulance, a private hospital, and not all hospitals are stroke centers. So my neighbor also helped select the hospital. That was really a game changer.
Life Before AVM Rupture
Bill Gasiamis 5:59
Yeah, that seems like it was really helpful. So your rupture happened in September 2020? What was going on for you in life? What were you up to? How busy were you? What kind of things were you doing? It sounds like you think that the way that you were living your life did impact this situation? And perhaps make it occur or support it occurring? Is that accurate?
Carolina Aguilera 6:37
Of course, well, first, the pandemic was really awful all around the world. For us, I took more responsibilities within my home, so that I didn’t do before. Well, we were in almost completely locked down here. So the stress of maybe needing to go out to do something was not that great. I actually worked in a freight forwarder.
Carolina Aguilera 7:04
And I worked in the department that was handling the movement of vaccines all around the world. So I was the supervisor of a 24/7 team, working in the pandemic, doing the part of the work that it was needed. So I was doing maybe 18 hours, chipped. More or less, I didn’t have to stop. Also, you know, people take some hobbies in the pandemic, and here, it was becoming a bartender.
Carolina Aguilera 7:41
So I was testing all those options, my dad was into the hobby, becoming the back bartender and doing drinks. So I think that I drank too much at the time. And the stress levels of course were up high in the sky. Instead of maybe sleeping or resting, I was going until maybe 200% of my energy.
Bill Gasiamis 8:12
And was that just to keep yourself occupied? Were you having difficult mental health issues at the time, because of all of those things that were going on? It’s very familiar story that I hear about people drinking more during the pandemic and increasing the amount of stress that they had and decreasing the amount of time they took to look after themselves.
Bill Gasiamis 8:35
And they often say that it was because of the mental health situation that they weren’t aware of at the time, and they needed something to cope. Is that what happened to you?
Carolina Aguilera 8:46
Well, I guess so. Definitely, before I didn’t pay that much attention to mental health. At some point, I think that it was not just to keep me busy. But because you have the pressure that you need to do things at the time that were consider important for my work. And of course, for my family.
Carolina Aguilera 9:13
Well, you didn’t want to lose your job in a pandemic, you still need to try to make time to do the other things that you didn’t do before. So it was something. I think that maybe I did find some other ways to reduce my stress. But at that day, the couple of things that I remembered was a tough one.
Bill Gasiamis 9:39
Yeah. I found myself struggling during that time with a lockdown in Melbourne, where I’m from, in Australia. We had the biggest lockdown of any city around the world. We were locked down for more time than anyone in the world. So in the first two years, we were more than a year in lockdown. And it was just intense, and people were stressed out. And they were really struggling with all the things that they weren’t able to do.
Bill Gasiamis 10:19
Because we weren’t also allowed to travel out of the house, we weren’t allowed to go more than five kilometers from our home. We weren’t allowed to be out after dark. It was pretty serious stuff, you know. So I find out this conversation brings back those memories that were definitely all unpleasant.
Bill Gasiamis 10:43
And even though I had been through difficult times before, like stroke, and recovery from that, and all the things that stroke takes away from you. To me, it felt a little bit different because, even though the stroke took a lot away from me at the beginning, I still had the freedom to move around if I was feeling well enough to move around and go places and see people.
Bill Gasiamis 11:10
And this restriction was far more difficult, especially in the second year of the pandemic, when we had been going through it for one year already. They weren’t allowing us to work. They were paying everybody to be at home. So did the government support anybody in Panama? If they weren’t working? Was there any way that they supported people, workers or organizations that had employees to stay at home?
Carolina Aguilera 11:45
Yeah. But again, it was not our case here at home. So we were lucky enough to have two different incomes. And at some point, the pandemic and the lockdown, it may sound really tough, maybe some people really had hard time. But for us, it was actually a blessing. I could even say use that word. For us. As a family, I live with my parents, my two brother and my sister.
Carolina Aguilera 12:18
We didn’t spend that much time together before. So it was a really a great environment that we had here at home. And well, even though I’m from Latin America, I’m not that person that needs to go out that much. It was not that much of an impact to being at home.
Carolina Aguilera 12:39
And if I bring that to what, Eric, what, oh, everything that happened with the stroke, the surgery and my recovery, I think it also had a positive side in me. Definitely being in lockdown, and with everything that happened. And working in my recovery, had the positive thing that I didn’t have that many people around me, which at some point, yes, you need that for your, your skills to not lose that.
Carolina Aguilera 13:09
But for me, it was creating a safe environment, I was able to focus on me not having that much of noise. And not many things in my surrounding. I don’t know how it happens. But at least here, as we are really close in terms of family, and not only my core. But here you have a big family, almost everyone. So imagine being in a recovery with everyone here, calling you every day, it’s a blessing.
Carolina Aguilera 13:41
Don’t get me wrong, but for me, the noises was too much. So it was a positive thing. I had the opportunity to also have private therapist, my parents went to the next level with that. So everything was at home, really safe. And going out was a lot of stress. Going to the doctor and to those appointments was I don’t know, it was really crazy.
Bill Gasiamis 14:11
Was that difficult. Neurologically, you’re saying was overwhelming for your brain and for your energy levels to go through the process of seeing the doctors on the appointments?
Carolina Aguilera 14:24
Yes, of course it took a lot more time. So you need to select the right doctors. Not only that, but to the right center. That day, we didn’t want to go to COVID hospitals. Where they were working with COVID patients or where the main centers of those.
Carolina Aguilera 14:41
So we choose other type of clinical centers here in Panama. And also, we took the opportunity of hiring private therapists, the ones that are the psychological part of it. We were using Zoom as a tool for physical therapy, he was coming here.
Bill Gasiamis 15:06
Okay, so you had a little bit of a mix, some physical therapy at home, some zoom, and then some appointments, that sounds like it was really good. And overall, you enjoyed the fact that well, locked down came at the right time for you so that it could decrease the number of people that were coming to see you, I understand what you mean from a Greek background.
Bill Gasiamis 15:26
So the family is also very over-concerned, and they expressed their love by coming and seeing you and hanging around and wondering what they can do for you, and all that kind of stuff. And like you said, it’s useful, but it’s also very draining.
Bill Gasiamis 15:48
When they don’t understand what it is that you’re going through, they can see that you’re unwell, but they don’t actually understand what’s happening inside because of the invisible part of the challenges that are associated to a stroke.
Bill Gasiamis 16:02
So yeah, it is a little bit of a blessing that you were in lockdown, and you didn’t have to experience all of the family coming to see as much as you love them. What was your mindset like, during recovery? Did you end up reflecting on the serious nature of this event?
Thinking About Mortality After an AVM
Bill Gasiamis 16:23
Did you feel like, wow, this nearly took my life or that it ended? Or that it could have ended? Did you have any shift in your thinking about mortality and those types of things?
Carolina Aguilera 16:39
Of course, well, first, the fact that I was a ticking bomb, if you think about the malformation, so at any point in my life, that rupture could happen. That’s the first thing and of course, it’s a life changing accident experience, that of course it makes you think a lot.
Carolina Aguilera 17:04
For me, I did change a lot after my stroke. And it happened that, I don’t know if it was your experience. But after you are in a recovery, you really get to be with the people who are really going to stick with you, in anything that could happen. So it was having that realization, that these are my real people, the path or the goals, objectives that I had in life, change confidently.
Carolina Aguilera 17:40
So really briefly, let’s say I was this millennial who had this plan for her life, I need to finish college, I’m going to take a master, maybe a doctorate, I’m going to be dispersed in the logistic world, which I worked on, but everything lost that value or that sense of importance in me. So I was able to say I don’t want to do any of that. I need to change my priorities. I want to do something else. And well, it has been almost two years. I haven’t found it yet. But hey, that’s the joy right? Trying to find what I’m doing.
Bill Gasiamis 18:25
Yeah, so your work, working logistics is just one of the things that you do. It sounds like in Panama, a lot of people would be involved in logistics because of the Panama Canal. I expect that as a big employer in that area. So did you end up there by chance? Or was it a career path that you wanted to follow before the stroke?
Carolina Aguilera 18:53
Thanks, gents. My experience, I always thought I was going to be an engineer. I was going to continue with my parents company. But that didn’t happen. So I ended up there by chance. I ended up loving it. And well, I think my career path was mostly into administration and more on business management than anything else.
Carolina Aguilera 19:18
So I did those two things together. So I was kind of working in the logistics transportation industry. You can get more focus on being a manager trying to really help others. But yes, well, I think one of the most shocking things was that question that the therapists asked me a lot like how you want them to remember you, those characteristics that will define myself.
Carolina Aguilera 19:55
And there were almost everything about work, about my studies. I mean, they have some good things but I think that you don’t want people to remember you because you were great at school or you were someone smart. I wanted more.
Bill Gasiamis 20:17
She was very good in logistics, she was the best logistics person in the industry.
Intro 20:23
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 20:47
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 21:06
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 21:25
It is a good thing for people to say about you when you’re employed there. If your employer believes that and the people that you work with believe that, that’s a great thing, because that helps you get promoted more money, or it makes your job easier, or it makes other people’s jobs easier. That is a good title. She’s the best at logistics.
Bill Gasiamis 21:45
But it doesn’t go towards a fulfilling life, does it? There’s more to life than just logistics or just work. And what people think of you at work, it’s really important to get to know what you love, and to practice that and to do some of that.
Bill Gasiamis 22:03
So that you can experience joy at a different level, not just one that’s about performance of work or performance as an athlete or performance as anything. So what are some of the things that make your heart sing that makes your heart smile and come alive?
Carolina Aguilera 22:26
It’s actually helping others. I found that as the most gratifying thing ever. And well, by working one of my lists, it was a flop. But I took care too much about my teammates, and working to make sure that everyone was doing okay. So it was that kind of style of management that I used to have. That was kind of my label on it.
Carolina Aguilera 22:58
Now after the stroke, one of the things was that my emotions were heightened. The part of my brain that was mostly affected was the frontal lobe. So it was all emotions, or not able to control a lot of my reactions. So unfortunately, I was not able to continue on that role as supervisor as manager. So they took up that responsibility of having people under my wing.
Carolina Aguilera 23:27
So after the stroke, and coming back to a little bit of normal, I needed to find something else to do. So I’m going through the path of maybe working with foundations, I now do a lot of work or try to connect with more in the church, more instance of the community of healthy.
Carolina Aguilera 23:49
But definitely, through that, I found out that I’m the one creating the limitations. I’m the one who thinks that I’m not able to help that much, or that I’m the burden. So that’s still ongoing project. And to find that place where I feel better about it.
Bill Gasiamis 24:08
I think you’re gonna find that, it doesn’t come straight away. It’s part of finding your purpose. And people think that with purpose, you need to work it out before you start going towards your purpose, but you don’t. I think it starts from helping people just like you described that. Now your mindset has shifted from being somebody that helps people work better in an organization to people being better in themselves.
Bill Gasiamis 24:34
And emotional intelligence is part of that because you need to be able to connect to your heart to be able to reach other people at that level, so that they can feel like a similar connection. That’s not about productivity. That’s not about shipping or work or any of that stuff. It’s just about connection, for the sake of connection sometimes, and that’s going to start changing your identity.
Bill Gasiamis 25:01
And as you do more and more work in that space, you’re going to find that people will come to you. And they’ll start sharing how helpful your support was, or how helpful the things that you did were. And I’m speaking from my own experience, because that’s what happened to me with the podcast, people would reach out to me and tell me that they thought it was amazing what a fantastic job, I’m doing all that type of stuff.
Bill Gasiamis 25:01
And I never expected that when I started the podcast. And that started to fulfill me, because nobody ever told me that the work that I was doing before the stroke was amazing. And it was fantastic. And it was what the world needed. And it’s going to change lives, it was just work, no one really taught me about that. So it didn’t have that feeling where other people valued what I was doing.
Bill Gasiamis 25:56
In that part of their life, that’s going to make a difference in the life, it was just a task that I was doing, that they needed to be done that I was getting paid for. So very, very different. And as your identity shifts from being the person that you were before the stroke to somebody who helps other people, you’re going to find that that’s fulfilling.
Bill Gasiamis 26:25
And once you understand the level of fulfillment that you get from it, it’s going to be very difficult to stop going down that path, I certainly can’t see myself stopping the podcast anytime soon. There’s about 200 episodes, and there’s going to be a lot more because it is what I needed when I was unwell, which wasn’t available. And I still need it.
Bill Gasiamis 26:53
Now that’s why I reached out to connect with people from all around the world that’s been through something like I’ve been through because you’re helping me. Hopefully, I’m helping you. And we’re both helping other people. And that’s when I realized that I was starting to fulfill my role on the planet, the reason for why I’m around not just to go to work and make money for somebody else.
Carolina Aguilera 27:22
I think it’s really beautiful when you try to redefine everything that happened to us. Well, I don’t know if I’m ready there. But I think you are and you’re talking by experience. So definitely, they ask those questions at the beginning that it’s something positive, with your grief trying to see the positive side of it. And that’s difficult on the first month. Definitely.
Carolina Aguilera 27:51
But that comes like, out of nowhere. And mainly by telling my story, it has come to that point. And well, people will say that they don’t know that I had a stroke. So they’re always shocked about that part. But every single time I tell my story, have a better outcome on what’s going on. And you never know when you’re helping.
Bill Gasiamis 28:21
I think you’re helping a lot. So you didn’t have good sleep routine, because you’re working way too many hours. So if you’re working up to 18 hours a day, was that seven days a week? How many days a week you’re doing that?
Carolina Aguilera 28:41
Well, I did try to sleep from Monday to Friday. But my schedule was really crazy. I didn’t have an official schedule. So at least those 18 hours were not that common. There was maybe something that required my attention, then I will do that. And I will do that mainly because at that time if I fall asleep, and then try to work, that didn’t happen for me. So I prefer to stay up in that period of time. But yeah, mainly it was not that much.
Managing Fatigue After Stroke
Bill Gasiamis 29:22
Yeah. And have you made sleep a priority now? Do you spend more time asleep or making sure you get to sleep on time? What do you do now?
Carolina Aguilera 29:32
I hate the fatigue. It’s the one that is leading my life. So there is no other option here. So sleep is the only thing that is gonna recharge. So now I do need nine hours of sleep. And it’s not necessarily a priority, but it’s the body, it’s the one that is asking for it. So there’s no other choice here.
Bill Gasiamis 30:00
There’s no getting away from fatigue, once the fatigue kicks in, then it’s time to rest. So, is that getting better? Or are you still getting fatigued a lot during the day? How often do you feel very drained and very fatigued?
Carolina Aguilera 30:15
Well, it’s getting a lot better. Now I’m working eight hours at the beginning, maybe eight months ago, I did need to take resting time, maybe three hours of sleep, and then the rest of the day. Now I can go through my day completely without needing naps, or those power rest.
Carolina Aguilera 30:42
And I’m often asleep by 10pm maximum. Well it also varies according to my day. Because if you want me to go and do a whole lot of walking, I’m going to be tired. So I will need a nap. So again, it will vary it according to my day, it did get better. Whenever I increase my activity, I need to keep that up. Because then the fatigue is going to take you away one day of rest, you’re gone, you can keep up the next week.
Bill Gasiamis 31:20
Yeah, I recall all of those difficult days, after pushing myself beyond my limits. And then struggling the next few days, you really quickly learn your lesson to stop before your limit or near your limit or just after your limit not to exceed it for too long. Because then you pay a big price the next couple of days, I used to be like that as well.
Bill Gasiamis 31:48
And I think that’s improving for me. So it doesn’t happen now. But I’ve been on this journey for 10 years now. So things are changing all the time and improving for the better. So immediately after the bleed, I imagine that you stopped drinking alcohol, you weren’t in a position to drink alcohol. Where are you with your nutrition now? How has that changed?
Carolina Aguilera 32:17
Well, the nutrition is the topic. And mainly because as I mentioned, my emotions are going crazy and anxiety was up to the sky. So believe it or not with me on a diet, I was angry all the time, I was not able to do much in my physical part in physical therapy of my arm, which is the one that is the most affected of my left arm.
Carolina Aguilera 32:46
So I was so angry that I was not able to improve on my arm. So we needed to take decisions there. So it’s all about that changing my lifestyle, not necessarily being on a diet, it’s about the choices that I made. The goal is to make sure I’m stable as in my mood, because my hand is 100% emotion, even thought that I was having spasms or any type of really low epilepsy in my arm. But it was just my emotions. So it has been quite a few months, trying to figure out why I was not improving. Not as fast but as I should have been doing with my arm.
Bill Gasiamis 33:37
As you should have been doing according to you, or did somebody tell you that you are going to be recovering better?
Carolina Aguilera 33:44
My therapist. So again, your recoveries never aligned, right? I’ve learned that the hard way. But it was so frustrating that my hand will not open. So he knew that I could do some level of movements. But it was not making sense that I was completely stuck at some point during the session.
Bill Gasiamis 34:09
So it was a little bit difficult to understand?
Carolina Aguilera 34:14
Yes that’s why they recommend that to deep dive and see what’s going on. Is it the muscles, the brain, or any electric part that we need to maybe help you a little bit with medicine. So yeah, the tests show that I’m just a big emotions bin and that my hand is reflecting everything. If I’m angry if I’m upset.
Bill Gasiamis 34:43
Right. Okay. I know that when I am angry, my deficits are worse. If I’m less angry, my deficits are better. So I noticed that as well. The performance of my body changes Depending on how I’m feeling and how I’m behaving and what emotional state I’m in, so I can relate to that.
Bill Gasiamis 35:06
I know there’ll be a lot of people listening who can also relate to that. I also noticed some foods make my deficits worse, like foods that are high in sugar, like breads, or sweets, or pasta or something like that will make my deficit worse and the numbness worse.
Carolina Aguilera 35:26
On the contrary it does make me happy. So at some point, they even bad joke, they call me the Hulk. So they try to bring me down, at least with food, like, go on, relax, come back.
Bill Gasiamis 35:41
Yeah everyone’s different, I wouldn’t be able to tell you what’s going on with you. But yeah, I know that food does impact people differently. So maybe for you it helps, but for me. Some foods help, but some foods don’t. And I avoid them that’s all. So you mentioned that also, now that are you’re more physical with exercise than you used to be before stroke? What’s that like? How has that shifted your amount of exercise level?
Carolina Aguilera 36:12
No, actually, before, I think I’d had this crazy scheduled before even pandemic. So besides working, I went all mornings to the gym, then college, or university, whatever you any call it. So before I had so many more activities. Now of course, with the fatigue, we needed to find something that helped me. So I found Pilates I think it’s pronounced that way.
Carolina Aguilera 36:47
The main activitie is Pilates, three times a week. But I do some cardio. Of course, our for some people, they recommend you to do daily walks, maybe 30 minutes, try to relax yourself with yoga, things like that. But guess what, for me, it was the country I couldn’t stand the walks, I couldn’t stand the yoga, I will get mad.
Carolina Aguilera 37:11
So yeah, The crazy part was that I didn’t know how to deal with that, with all the motions happening. So that was a topic for me. I don’t know how to say it, definitely I came from a person that before the stroke was considered to be controlled, really focused. After that, I’m just a teenager again. So that was fun for my parents, I guess.
Bill Gasiamis 38:00
All emotional things all over the place. So yoga didn’t help you at all? You didn’t enjoy yoga.
Carolina Aguilera 38:06
No, I was so mad. Like, I need to breathe. I was mad, all sessions. Like, no, it’s okay, maybe you should not do that.
Bill Gasiamis 38:19
How is Pilates different?
Carolina Aguilera 38:23
You do the breathing exercise, but for me, they do something personalized, where they try to push me a little bit more. And that’s something that happens through all the different type of therapist that I have. For me does not work the relaxing part or trying to sugarcoat me through the sessions.
Carolina Aguilera 38:46
More like, I need that challenge, I need to make sure that we are doing important things are not important, but I can see that I’m working for it. That’s what I need, that they don’t treat me softly in Pilates. I don’t believe that Pilates is easy or yoga is easy, but I needed that a little bit more of speed.
Bill Gasiamis 39:25
Yeah, I understand they are different Pilates sounds to me like it’s more of a rehabilitation therapy in a way. And yoga is more of a spiritual quiet thing you know, where as well as stretching and moving your body and connecting to your body. You’re also going internal. Does that sound like it? Does that sound similar to what your experience was?
Carolina Aguilera 39:56
Yeah so maybe that’s that’s part of the focus that I was not that into the mindfulness or the spiritual part of the yoga that maybe that’s why it didn’t work for me. And of course, they recommended maybe to be connected with nature, but didn’t work at all for me. And hear in Panama I do live in a city, but like, go to the park and see the forest, the trees, that doesn’t work. It’s great but not for me.
Bill Gasiamis 40:39
Not for you. Yeah, it’s great. Whatever, everyone’s different. That’s the beauty of this, it doesn’t have to be the way that somebody else did it. And that’s what’s good about you making the recovery the way that you prefer, you know, because if it’s, if I’m trying, if you’re trying to recover the way I prefer, that’s not going to be useful, that’s not going to be supportive.
Bill Gasiamis 41:02
And isn’t it interesting that you hear a lot of talk about mindfulness about going in about meditation, and how important that is for a lot of people. And it is important because it is helpful, but for you, you can’t go there? Is your mind is racing? Or it’s too quiet? Too stilll? What is it that’s unsettling for you about that?
Carolina Aguilera 41:28
So I’m my worst nightmare. So the noise, I’m creating the noise. So that was not helping at all. So usually, those two options that I mentioned, make you create the silence, but I never was able to reach there. So let’s say for my therapy, and in terms of my mindset, my psychological and mental health.
Carolina Aguilera 41:56
Instead of trying to make it quiet, we always try to accept it, that it’s okay that I had the noise that I am always, maybe using that negative part. But accepting that it’s there using it more as a fuel, instead of making it stop me. So I mean, it’s been two years. So it’s a lot of work, instead of trying to, maybe that’s something that I never felt related with, that you need to see the positive side of things and trying to maybe accomplish or focus more on that.
Carolina Aguilera 42:35
For me, the path was I do have the noise, I do feel angry, I do feel sad. It’s never going to go or at least not right now. But I’m going with it. And that’s my partner at some point. And it’s to find a way to live with it. And this is the funny part because not only the disability, everything physical, that is the challenge that you mostly focus on. But understanding that also how you work how my mind change from before and after.
Carolina Aguilera 43:13
And the challenges of talking with someone making the difference that how your energy is always drowning, with some, activities. And besides that, of course, exposing yourself, it’s really difficult, whenever you have that noise in your head that maybe they are seeing how I’m doing or, or you know, all the things that go through your mind, especially during the recovery. So that was a tough one.
Carolina Aguilera 43:51
Accepting that part, there’s always a payment on everything that I was doing. I mean, the process of accepting that I had the noise, that it had all these challenges that I needed still to continue, but not only with my physical things, but my thoughts that was not helping. As I mentioned, my hand how I was always angry.
Carolina Aguilera 44:23
So at some point, it’s making the decision that you’re still going to be doing your work on the recovery. And now you have this amazing partner of yourself telling you bad things. So yep, now it’s your decision what are you going to be doing? Are you going to stop yourself or are you going to still do it? Are you gonna still go out? I don’t know that’s always the challenge.
Managing Your Emotions
Bill Gasiamis 44:55
Yeah, I like what you said about what you’re doing is you’re recognizing that you have these emotions, happiness, sadness, anger, frustration, and they are all just part of your life every single day, they’re part of everybody’s life normally.
Bill Gasiamis 45:12
And what you’re doing is instead of letting them define you, or letting them control you, what you’re doing is you’re using those emotions to channel them in a direction that is going to be supportive and useful for you. And it sounds like, for example, in Pilates, it’s, you need the challenge, you need somebody to tell you, we’re going to do this, and you have to challenge yourself, and you have to push yourself and you have to go further.
Bill Gasiamis 45:40
So it sounds like you’re channeling that energy from those emotions into this thing, which is getting you a good outcome at the end. And at the same time, you’re not making yourself feel bad about having emotions that are not always supportive, like anger, or frustration, you’re just going well, I’m a person, and I’m experiencing these emotions. And I’m not going to worry about them or stress about them, I’m going to accept them. And I’m just going to use them in a positive way, even though they appear to be a negative emotion.
Carolina Aguilera 46:15
I think it’s a lot about the perception that they were usually bad emotions, nothing is bad, but you should not be feeling or focusing that much. If you’re trying to recover. I don’t know if you have experienced that, that you need to be positive during your recovery, you need to think positive, you need to think that you’re gonna overcome it. And definitely the words that people often tell you, it’s not that they do it with a bad intention.
Carolina Aguilera 46:52
But it’s just the norm, I guess, that they prefer to tell you that everything’s gonna be okay, that you need to be patient that you need to see the positive. But for me, it was making me feel angrier all the time. And I guess for anyone who is feeling that way, it’s not bad, not good. But it’s what works for you. Right?
Bill Gasiamis 47:15
Yeah, I certainly didn’t appreciate when some people told me to be patient. Because I’m not sure what that means. How do I be patient, I can’t walk, I can’t use the left side of my body, I can’t remember who came to visit me. You know, it’s a bit difficult to be patient for all of that stuff to come back.
Bill Gasiamis 47:35
It makes sense now that I look back on it, patience would have been supportive. But at the time, I didn’t know how to be patient. At the time, I was new to not knowing why my left side of my body doesn’t work? You know, I’m brand new at it. I didn’t have 37 years of experience of not knowing how to use my left side of my body that just happened overnight.
Bill Gasiamis 48:01
After brain surgery, I couldn’t use my body. So I’m learning about it. At that time, I’m trying to learn what does this all mean for me? How am I supposed to exist in the world with half of my body not working that for 37 years did? What do I do now? How do I be me? And how do I go about business?
Bill Gasiamis 48:26
But not only that is I’m learning about how to ask for help, what kind of help I need to ask for. And when I want to go to the toilet, and I can’t go there on my own patience isn’t going to be helpful. It’s something else that’s going to be helpful. It’s determination, maybe it’s anger, put in the right direction, or maybe it’s something else but I was in the toilet calling the nurses.
Bill Gasiamis 48:55
I was in my hospital bed calling the nurses to come and help me but because they were busy, they weren’t able to come. I couldn’t be patient with them. I dragged myself with half of my body out of my bed into my wheelchair and tried to push myself to the toilet until they finally came and saw me on the way to the toilet. And they told me you can’t get out of bed. You can’t do this type of stuff. It’s too dangerous, etc.
Bill Gasiamis 49:23
And I said, Listen, I don’t know about you. But I did not want to be in a position where I couldn’t hold on any more. I had to go. And if I have to go and you don’t come, I have to find the way to do it. And I can’t be patient for you to come and see me so I understand what you’re saying about patience. It’s not necessarily always essential to 100% of the time be patient because other people prefer you to be patient.
Bill Gasiamis 49:56
Right now I don’t prefer to be patient. I prefer to be impatient and angry and crazy mad and all these things, and if it helps me to achieve something. And that’s the only place I know to go, to get energy to achieve this thing, I’m going to go there. And if it’s not the right thing to do in the long term, if it’s not going to be the right way to do things in the long term, I’ll stop doing it at some point in the future, and I’ll find a new way. But right now, it’s also new. I’m so overwhelmed and frustrated by this new version of me. Impatience is the only way.
Carolina Aguilera 50:40
You mentioned something so important. That I will find later, maybe after a year that I didn’t like the part that we are strong. I consider we are survivors, we adapt to every day. And again, we were some way before. Now we need to adapt to what’s happening. And definitely in our recovery.
Carolina Aguilera 51:06
There are so many changes, ups and downs, that for me, the word that describes us is survivor, we just adapt to what’s happening. And what you feel, what you use to get to that point. And again, if it’s healthy for you, it’s the way that works for you. It’s okay. But it’s about finding the way, that that’s the way to define your recovery process.
Bill Gasiamis 51:35
Yeah, finding the way, I agree with you, and me, I wasn’t strong all the time. Sometimes I was physically very weak. Mentally, I was very weak, emotionally, I was very weak. And I’m not sure if I take the word of somebody who comes to see me, “you’re so strong, you’re gonna get through this.” I’m not sure if that’s always supportive to hear that I’m so strong. Sometimes I want to hear “sometimes you’ll be strong, sometimes you’ll be weak.”
Bill Gasiamis 52:07
Sometimes you’ll be frustrated, sometimes you’ll be all these things. It’s more accurate than I’m so strong, and I don’t want to be strong. When I feel emotional and want to cry. I want to cry, I don’t want to stay strong and pretend that everything is okay. And make you feel happy or make you feel okay that I’m doing okay. Sometimes I want to cry. And if that makes you feel bad. Sorry. That’s your problem. I can’t do anything about that.
Carolina Aguilera 52:38
I get it. Definitely, I don’t know. I understand the feeling. I’ve been there. And maybe it’s because I’m so close to them. But in my recovery, it was me doing both the physical work, the mental work, but there’s my family, my core, that were still around me that at some point, if you’re recovering, you’re fortunate to have one person close to you. So it’s definitely the communication on that side is going to be a key point to it.
Carolina Aguilera 53:17
It happened to me, and I’m grateful for it. My support system, were able to identify what I needed at the time. Because definitely, it was not all the time that I was angry, all the time that I was trying to find that solution. But they were able to find this balance I took with me to bring that push or that medicine what I needed at the time.
Carolina Aguilera 53:46
So definitely if you’re feeling sad that time they were able to find a way to either be there with me, or, I think of this funny story one time, my sister told me “okay, you want to cry, go cry five minutes, come back, let’s find a solution.” So it’s a journey that you are not alone. And if you’re grateful to have a person that is with you, that you are able to communicate to find that balance, because definitely you’re going to need it.
Bill Gasiamis 54:20
Yeah, I love what your sister said it’s about going through that emotion for a little bit of time, getting it out of your system, and then refocusing and seeing if we can focus on the solutions rather than the problems. Stroke Survivors can sometimes focus on all the problems because there are a lot of them for a lot of people. So it’s understandable, but focusing on problems is just going to give you more problems.
Bill Gasiamis 54:44
And I feel like focusing on solutions. Most of the time, will give you more solutions than you knew were available. Because sometimes we don’t know what’s available when we have focusing on problems because man there can be so many after stroke. And then you’ve used your energy already focusing on all the problems, that you don’t have any energy to focus on solutions, that’s the other thing.
Bill Gasiamis 55:11
So you really have to be careful with where you put your energy or the majority of your energy. And for me, it was definitely on solutions. But in order to have solutions, you need to know what your problems are. So it’s okay to know that they are there. But which ones are the most important ones right now is the most important problem that I can’t work? Is it that I can’t stand?
Bill Gasiamis 55:37
Is it that I can’t drive? What is the most important problem and which ones are we going to start to work towards first, so we can achieve a few goals. And then keep going forward, instead of finding the biggest problem trying to solve that one, and then not having any success, and then feeling a bit bad about everything.
Carolina Aguilera 56:03
Great. And definitely, we need to know, our limits, our energy, and it’s about the decision of where you’re going to focus. I think with time you get an expert on making that choices. So everyone who is a newbie in the stroke recovery, then you’re going to be making those rash decisions. And I want to try to walk just on the first day, or trying to push yourself.
Carolina Aguilera 56:33
So definitely the first step is knowing that limit, knowing that you’re going to make the decisions every single day. And it’s your energy. So it’s about what’s going to work for you. Yeah, so definitely, that’s our days. And the sooner you accept it, the sooner you embrace what you can do, instead of what you can’t. That’s gonna be the key for a healthy recovery.
Bill Gasiamis 57:04
A little earlier, I think you mentioned the church and becoming more involved or helping out at the church what kind of involvement you have there now and how has that helped you and supported you to go to that space?
Renewed Faith After An AVM
Carolina Aguilera 57:44
So those were one of the things that I did without thinking. It’s not like I planned to go maybe deep or having more interaction. But definitely whenever we have these accidents, you get mad and you start thinking why this happened to me, if you believe in God, why did you make this my life and for some reason I had that hole in me that I was knowing that something was missing.
Carolina Aguilera 58:20
I thought of when I was feeling better in the previous years, so it was definitely when I was closer to God, to my community, going to church, so I decided that maybe this could help me a little bit more. So there are several, I don’t know how to say it in English. After the baptism, you need to go through several stages. So I was spending the last one where you reconfirm your faith.
Carolina Aguilera 58:53
And you say yes, I believe in this and I believe in my church, so that’s what the process that I did. And it actually helped me connect a lot with people having been in lockdown, just focusing on work, I didn’t have that many connections, beside my friends, really close friends. So I was not exposed to telling someone that I didn’t knew me from before what happened.
Carolina Aguilera 59:27
So that was kind of a test or a really great experiment that turned out in great. So they encouraged me to either help in terms of different groups. If you wanted to make donations if you wanted to help. Here, mainly they were building these bags of food for people who lost their jobs, that was one option. And that’s when I discovered that I was the one that was holding me back.
Carolina Aguilera 1:00:03
So I stopped from going to several of these things, because I thought that I was going to slow them down. Because my hand was not working, that I couldn’t help that much. So I tried to find other ways, definitely connecting with some other members that were having struggles. That was one of the things I found out about this lady who had a stroke before, she’s older than me. So I connected to what she was doing at the time, given this type of support.
Carolina Aguilera 1:00:38
And definitely, I had this group of people that we try to make either donations or do something regularly. And not only with them, but with my family. Doing an activity with some kids in like community, a little bit far. But we give them support during their days. And they’re usually families with a lot of violence. So we did something silly as a Christmas party, so they were able to go there enjoy giving them gifts.
Carolina Aguilera 1:01:21
So that was a really awesome experience, even with my hand trying to build this little gifts for them. So those are the things that definitely it’s creating that connection. And not only connection with people with your present, knowing that you’re doing something else, and it’s meaningful.
Bill Gasiamis 1:01:49
It sounds like you reconnected with your people. And you found a way to overcome some of your own negative self talk. At the same time, you found some amazing sides of the experience of helping other people and doing things for other people that were less fortunate, especially during lockdown and all the challenges that the country was facing and all your community was facing at the time. So that sounds like it was very rewarding and supported your recovery.
Carolina Aguilera 1:02:28
Yes. And actually with them, they were the first one who I told what happened, that didn’t know me. So at least personally, that was one of the most amazing experience. I was not expecting the outcome from that, standing in front of everyone and telling them I’m a stroke survivor. I don’t even remember the emotional part of it. I am trying to find my way and having people to welcome you back. And definitely that’s really credible and not only rewarding, but you feel the appreciation and the love of everyone.
Bill Gasiamis 1:03:22
It sounds like it’s been an interesting journey. And hopefully it’s going to be a journey of growth for you, going forward from here on. It’s only been a few years. So I hope your recovery continues. And I really appreciate you connecting with me to share your story. Congratulations on everything that you’ve done so far. And thank you so much for being on the podcast.
Carolina Aguilera 1:03:46
Thank you for having me. Thank you. It’s really great what you’re doing, you actually got to inspire some someone in Panama, all the other way around. So it’s really amazing. Thank you.
Bill Gasiamis 1:04:02
Well, thank you so much for joining us on today’s episode. To learn more about my guests including links to the full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. If you would like to support this podcast, the best way to do it is to leave a five star review and a few words about what the show means to you on iTunes, or Spotify.
Bill Gasiamis 1:04:28
If you are watching on YouTube, comment below the video, like this episode and get notifications of future episodes by subscribing to the show on the platform of your choice. Sharing this show with family and friends on social media will make it possible for people who need this type of content to find it easier.
Bill Gasiamis 1:04:50
And that may make a massive difference to someone that is on the road to recover after their own experience with stroke. Thank you so much again for being here and listening, interacting, leaving reviews and loving my show I really appreciate you, see you on the next episode.
Intro 1:05:09
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:05:26
All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:05:48
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:06:03
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Intro 1:06:28
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1 hr 7 min
August 17, 2022 Recovery from A Type A Aortic Dissection – Theo Koutalos
Theo Koutalos author of the book Loshi and The Battle of The God Stones joined me for this lovely chat about the two dissections he has had to recover from, one at age 38 and the most recent at 45.
Instagram
Loshi and The Battle For The God Stones
Highlights:
00:52 Introduction
04:53 Ignoring The High Blood Pressure
08:14 Ischemic Attack Experience
15:35 Blood Pressure Spike
21:16 The Open Heart Surgery
29:41 Recovery At Home
36:44 Living With Life-Long Deficits
44:51 Loshi and The Battle Of The God Stones
50:11 Learning About Empathy
57:03 Being A Dad After A Stroke
1:05:50 Pay It Forward
1:17:34 Publishing The Book
1:30:49 Rebelling Against The Culture
Transcription
Bill Gasiamis 0:00
Survivor’s guilt. Did you get that?
Theo Koutalos 0:01
Yeah. A little bit, I was kind of in between of not understanding what happened and trying to realize, “Am I alive because of the surgeons or am I alive because my wife, and her mom in Africa have like 1000 people praying for me.” Like, is there a reason? I’m alive right now.
Intro 0:39
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Theo Koutalos

Bill Gasiamis 0:52
Hello, and welcome to episode 209 of the recovery after stroke podcast, if you are a stroke survivor with a story to share about your experience with stroke, and you’ve been thinking about reaching out to be a guest on the show, but were waiting for the right time to reach out. Well, this is it. If you go to recoveryafterstroke.com/contact, you’ll find a form that you can fill out to apply to be a guest on the show.
Bill Gasiamis 1:16
As soon as I receive it. I will respond with more details on how you can choose a time that works for you. For us to meet over zoom. Now my guest today is Theo Koutalos and author of the book Loshi and the Battle for the God Stones, and a two-time stroke survivor who experienced his health scares seven years apart. One at age 38 and one at age 45 Theo Koutalos. Fellow greek welcome to the podcast.
Theo Koutalos 1:16
Thank you.
Bill Gasiamis 1:37
How long has the family been in Canada? And when did they immigrate to Canada?
Theo Koutalos 2:02
My mom and dad roughly came around the early 50s. My dad fought in the Greek civil war right after Germany left. The civil war broke out and he ended up fighting. And then, after the war was finished, my dad moved to Canada. And my mom. I believe she came in 56. And they met at church, they met at a greek church.
Bill Gasiamis 2:36
The perfect place to meet back then.
Theo Koutalos 2:39
Back then. That’s how they met.
Bill Gasiamis 2:41
Fantastic. And which part of Greece are they from?
Theo Koutalos 2:46
My mom’s from Rhodes. And my dad is from Tyrnavos much close to Olympia. He was from the villages out there.
Bill Gasiamis 3:02
Yeah. Awesome, man. Have you been back?
Theo Koutalos 3:04
You know what we went in, like the late 80s, I believe. And it was very “village” still. And I think it’s very different now. I think everything’s paved. And there’s a lot of stores and a lot of tourists. When we went there wasn’t very much tourism there. Now, I don’t think you can go anywhere without being bombarded by tourism.
Bill Gasiamis 3:31
Fair, you got to get there. Go back to Greece, and enjoy it, man because I go back to Greece as often as I can, which is not that often. But at one point, we were going back every two years for about six or seven years. And it was so much fun. We had an amazing time. And you get to see where the family is from, my wife’s family is also from Greece.
Bill Gasiamis 4:00
So we had a really amazing experience learning about our ancestors and getting a better feel for all of the stuff that they went through. They put up with they had to do, it’s very different to having the experience with my parents when they’re in Australia. And then going back there with them and then seeing them interact in their old villages with the people that are still there, you know.
Bill Gasiamis 4:33
So it was such an awesome experience. And then of course, we did the touristy things, and then we sat on a beach for as long as we could, in Greece, it’s full of them.
Theo Koutalos 4:43
Yeah, absolutely.
Bill Gasiamis 4:45
But tell me a little bit about you man and what happened to you?
Ignoring The High Blood Pressure
Theo Koutalos 4:53
I think before the 2015 stroke I had, I was battling with the blood pressure for about four years. And I think my doctor, I was going to what we call here a family practice. So what it is, is my doctor is a doctor who trains students to become GPs, general practitioners. So every time I would go to the family practice, I would have a different doctor.
Theo Koutalos 5:30
And I think they had a hard time keeping track of my blood pressure. And I was not really taking it as seriously as I should have. Because they tell you the same thing. I feel like everybody kind of hears the same thing. Don’t eat too much salt. You know, don’t be too stressed out, try to exercise, and I was on, I don’t know if you guys have the same meds in the UK or Australia. But we were using Ramipril.
Theo Koutalos 6:04
That’s what they had for me, and it wasn’t really doing anything for me. So I think the blood pressure thing bing as old as I was and not taking it in a mature way, it got me. I got bit like you would get bit by a shark or something.
Bill Gasiamis 6:04
Yeah. 38 years old at the time. And what was the onset like? Firstly, did you have any feelings that you had high blood pressure? Was there anything that happened in your body that suggested it?
Theo Koutalos 6:46
Nothing. It was literally out of nowhere, I woke up in the morning, I went to the bathroom. And it just happened like that. My whole left side just went dead. And I almost felt like I had like a glass box over my head. It was very muffled. Like that sound if you were to cover your ears, that’s what everything sounded like even my own voice.
Theo Koutalos 7:20
So I remember banging on the bathroom door, and I couldn’t talk. And I was just like, kinda yelling. And my wife jumped out of bed, saw me and she was in utter shock. And she called 911 right away. But I didn’t know what a carotid arterio dissection was. I had no idea.
Bill Gasiamis 7:44
You didn’t know what a carotid artery was. You didn’t know anything.
Theo Koutalos 7:48
And, I really didn’t think anything like that would have ever happened. It was really scary.
Bill Gasiamis 7:55
No. So you’re in the bathroom? In the middle of doing your business?
Theo Koutalos 8:02
Yeah, like in the middle of urinating, and it just happened, like that.
Bill Gasiamis 8:08
And then were you able to get out of the bathroom? Most of the bathrooms I imagined are small.
Ischemic Attack Experience
Theo Koutalos 8:14
I pretty much. So the day before I had what they call an ischemic attack. I was on my computer, and my left arm just went dead. I went to move my mouse on the computer, and I couldn’t. And my brain was saying move the mouse. And then it picked up my hand and it just went dead. And I’m like, “what?” So I ended up getting up, falling.
Theo Koutalos 8:48
And then about, I would say 15 minutes, everything kind of came back. And I got up I took a shower. And I went to the family clinic. And the doctor was just like gets nothing, don’t worry. So then the next day, I woke up in the morning and I had my stroke. And my wife helped me get to the bed, put on clothes. And the ambulance was here.
Theo Koutalos 9:19
I live actually very close to a hospital. So I was very lucky. They got me to the hospital right away. And they put IVs in me. They brought my blood pressure down. And it was a two week experience of fragment. It’s a blood clot
Theo Koutalos 9:41
Thinner. Had to do that for two weeks and just a lot of doctor’s appointments. And it was interesting. It was an interesting experience.
Bill Gasiamis 9:56
Did your family lose this shit like my family?
Theo Koutalos 10:01
Oh yeah. My mom was freaking out. She’s Greek. And she was like, “Oh my God, my son and my son, what are we going to do with my son?” And my sister was a little bit nervous and scared. And yeah, it was my brother in law was like crying. He’s like, “what’s going on?” So it was kind of scary. Greek mothers, man. They take things very hard.
Intro 10:32
They take things to the next level of seriousness. My biggest job when I was unwell, was trying to keep my family calm, trying to keep them all calm. I’ll tell you. It’s not only is it hard, it’s impossible. So I was in hospital, the first bleed. And I’m in there for seven days, and the family is coming to visit me. And I’m supposed to be in my bed lying down and doing all the tests and all that stuff, which I am.
Bill Gasiamis 11:01
And then this one particular date. And I’m not supposed to be walking anywhere or getting out of the ward. And there’s one particular day my mom comes up to the ward. And I said to her “Where’s Dad?”. And she said, “Well”, “What do you mean? Well, where is he?” “Well he’s downstairs” “What’s he doing downstairs?” “Well, he collapsed at home, as we were leaving to come to see you. And the ambulance picked him up and brought him here.”
Bill Gasiamis 11:30
“What are you talking about? Where’s my dad?”, and she goes, “I think he forgot to take his medication. Or he took it on an empty stomach. He did something wrong in the morning.” And my dad is six foot and beyond. And he’s massive, right? Wide shouldered like overweight a little bit. There was no picking him up. So when he hits the ground, like he hits the ground hard, you know.
Bill Gasiamis 12:01
So the ambulance picked him up, they took him to emergency. And I go downstairs to visit my dad in emergency in the same hospital that I’m at, when he was supposed to be there to come and visit me, right. So that was my dad. Now. I had another blade six weeks later. And then I had another one in 2014. So move forward almost three years. At brain surgery, I’m in recovery in brain surgery.
Bill Gasiamis 12:38
And a couple of days later, they’re pushing me around in the wheelchair because I can’t walk. And I met lunch in the cafe of the emergency ward of the hospital. And my wife starts to go gray, and she’s kind of like passing out. And I’m like, “are you alright? What’s wrong with you?” You know, we’re trying to get her roused up and get her going and everything and we can’t.
Bill Gasiamis 13:07
So, we take her to emergency. There were some people with me think we took her to emergency. They got her checked out. And then they’ve taken it into a bed and they’ve connected her up to all the monitors and everything. So here’s me now, I’m downstairs with a scar on my head, fresh out of surgery, sitting next to my wife in the hospital. All the machines.
Bill Gasiamis 13:36
And my surgeon, one of the guys that was on the team on my surgery, he walks past and then he stops and he does a double take and he looks. And he goes “What are you two doing here?” I don’t know. “Something’s wrong with my wife.” Can you guys do me a favor and like look into it for me or something? That’s what we went through amongst all the other shit.
Bill Gasiamis 14:05
So I get what you’re saying about dramatic. And basically both of them weren’t looking after themselves. During that time. My wife was dehydrated. And my dad didn’t do the right thing about his medication.
Theo Koutalos 14:21
To be honest with you. My wife was really the only one who wasn’t worried. She is probably the most positive person I know. And she’s extremely faithful in her religion, her Christianity. And she was praying and praying and she’s like, “You’re gonna be fine. Don’t worry about it.” And on my mind, I’m like, “Are you sure you want to get married?”
Theo Koutalos 14:47
I’m like, I don’t know if I’m gonna die young, you know, you have your whole life ahead of you and she goes “Don’t worry, buddy. You’ll be fine.” It was pretty funny. She’s got a funny outlook on the severity of my condition. And, you know, she’s kind of like my soldier. She’s the one that’s making sure I don’t eat any salt.
Theo Koutalos 15:12
She’s the one that is very strict on how she cooks. And I’m pretty lucky, I’m pretty lucky because I don’t know if I would have been as healthy afterwards. If she wasn’t like so militant on the way I was supposed to eat, in the way I was supposed to exercise.
Blood Pressure Spike
Bill Gasiamis 15:35
What do you think’s behind that Theo?
Theo Koutalos 15:38
I don’t know, they don’t know, either. They’re a little bit shocked, especially with what just happened a couple months ago, they’re a little bit not understanding of my condition. They keep on saying that it’ll probably be smart for them to kind of log everything that I’ve been going through, because they can’t really pinpoint a cause for the blood pressure.
Theo Koutalos 16:11
Especially right now, my blood pressure is the best it’s ever been, ever. And they don’t know whether it’s because they fixed whatever the problem was. Or it could be a lot of things. I’m not the type of person to be stressed out. I’m not that kind of person. And I don’t know if it was really my diet, I think a lot of it might have been my cannabis use.
Theo Koutalos 16:41
In some cases. I know, smoking does raise your blood pressure. I was trying the DASH diet and all these diets, and it wasn’t really going down. I even quit smoking and it wasn’t going down. And they were kind of confused, from 2015 post stroke, to 2018, I was on seven or eight different drugs, trying to figure out how to lower the blood pressure. Because my average was 189 over, 88. And that was my average for years.
Bill Gasiamis 17:29
Wow, which means it’s so much higher a long time.
Theo Koutalos 17:32
And I’m like, I felt great. I feel fine. They were like, “You shouldn’t feel fine.” And I’m like, “I feel great.” And they’re like, “oh, man, something’s gonna happen.” They’re worried, right? They’re like, it’s too high. And especially with what happened four months ago, my blood pressure was over 200 over 99. And they were like, “what’s going on?” So it’s really weird.
Bill Gasiamis 18:00
Yeah. You come across as mild-mannered, pretty calm, pretty chill.
Theo Koutalos 18:08
I have the Greek anger. Don’t get me wrong. We all have it, It’s inside. Right? It doesn’t come out very often, but when it does, people are like, “Oh, he’s Greek.”
Bill Gasiamis 18:18
The fury.
Theo Koutalos 18:20
Yeah, but honestly, I have a good outlook on life. I don’t worry about anything. I don’t know. I don’t have anxiety. I don’t have depression. They’re really after my incident. They’re really worried. You’re like, “you might need to talk to somebody.” And I’m like, “no no, I’m good.” I’m not worried about that.
Bill Gasiamis 18:43
So are you really good, though? Really?
Theo Koutalos 18:46
Pretty good. Especially with what just happened? I’ve never been that close to death. And I didn’t have the feeling I was gonna die, even though I think they were expecting me to die. I should have been more nervous because well, might as well talk about it. So four months ago, I had a Type A dissection. So I was watching TV. And my dog started barking at me for no reason.
Theo Koutalos 19:31
And she started nipping on my arm. And I’m like, “whoa, whoa, whoa, what’s going on here” and then I suddenly got a crazy pain in my neck. And then I felt it shoot to my leg. My thigh started aching, and my leg just went dead. My foot started turning blue. And I called my wife. I’m like, I think I’m having a stroke. I’m not sure, I’m in a lot of pain. She rushed home. She looked at me and I was sweating. And she’s like, “we got to call 911.”
Intro 20:13
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 20:38
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 20:57
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
The Open Heart Surgery

(CLICK THE IMAGE FOR MORE INFORMATION)
Theo Koutalos 21:16
Called 911. They came. The second they looked at me, they picked me up and like ran downstairs and got me into the ambulance. Because they’re like we don’t have time. So, brought me to the hospital, straight down to CT scan, did the scan, brought me back up to the cardiac unit, and they did put IVs on both arms, which I’m like I’ve had hundreds of these by now.
Theo Koutalos 21:46
So yeah, go ahead. And they shot me with Fragmin again. And they got my blood pressure. So my blood pressure was 201 over 103 or something like that. They brought it down. And I think by the time it got to 174 over, I think 82 something like that.
Theo Koutalos 21:46
A nurse came in she’s like, “you’re gonna need open heart surgery.” And I’m like, “what? I thought it was my leg.” She said “No, no, no, no. Right now we have two surgeons on their way. They’re going to be here any minute. And they’re going to come talk to you and you. You are going to have surgery in about 20 minutes.” And I’m like, “whoa, whoa, whoa, whoa, what’s going on here?”
Theo Koutalos 22:44
And so the surgeons came, they’re two young guys, really nice guys. And suddenly I had forms on my chest. And they’re like, “sign these right now. We don’t have time.” And I’m like “what’s going on?” And the one guy pretty much said you’re aortic valves peeling like an onion. And he’s like, “if we don’t open you up right now it’s going to burst.” So I signed them, they left the nurse, looked at me like grave.
Theo Koutalos 23:16
I was so nervous for a second. I’m like, “am I going to die?” And all she said was “you should call your family.” And I’m like, Oh my God. And I’m thinking, what am I going to do here? I can’t call my mom, she’ll just die. I can’t call my mom, so I called my sister. My wife is freaking out because she thought it was my leg. She’s like, “what’s going on?” And I kind of explained everything, and I called a couple of friends.
Theo Koutalos 23:49
I’m like, “watch my mom, if anything happens.” And then before I knew it, I was moving towards the hallway into the elevator. They were cutting my clothes off in the elevator. And I got to the surgical room. They strapped my arms. And they covered me in pink stuff. And I woke up six hours later, or no actually, apparently I woke up six hours later, like bursting and moving. They brought me back down, the kept my chest open for another four hours in case of stroke.
Theo Koutalos 24:26
And they pretty much told my wife that if I stroked I would have died. And I think after that I woke up and I looked like Frankenstein. I have like a massive incision. I have an incision going this way and then had a hole in my stomach with wires poking out. And that was it. And I was like wow, I didn’t see a light so I’m pretty good. So I wasn’t that nervous because I didn’t see the light.
Bill Gasiamis 25:03
Isn’t it amazing what the human body can endure. But to think that you know that dissection, which is bloody minor that is so small. It’s not a very big thing that puts your life at risk. But these guys can open the chest up, open your arm up, open all these things, do all these things, and then the body’s going I can deal with that no problem.
Theo Koutalos 25:28
And honestly, these two young guys, they’re looking at me like, I was like a roast beef dinner, they couldn’t wait to get me open, I can see it in their eyes they were so excited you know, and I’m like, I think I made their day.
Bill Gasiamis 25:47
They’re the kind of surgeons you want on your team.
Theo Koutalos 25:51
They were so excited.
Bill Gasiamis 25:53
They’re ready to go on the field to do a touchdown to do whatever or score goal.
Theo Koutalos 25:58
Oh, they were like the champions of the day. They conquered a huge, mountain that day. Especially everybody that I’ve talked to since I’ve had to go to the Vein Clinic. I’ve had a million doctor’s appointments in four months. And everybody’s so surprised I’m alive.
Theo Koutalos 26:22
I get treated so differently by doctors. Don’t know if I’m a ghost. They don’t know if it’s like a sixth sense, like a Bruce Willis thing where like, Are you dead or alive? I don’t know. Because you’re looking at my paperwork. And they’re like, holy shit. You know, like, I can’t believe you survived this. And I’m like, Yeah, I think I have really good surgeons.
Bill Gasiamis 26:47
You have amazing surgeons. I mean, modern medicine is next-level amazing. Forget it, none of us would be here.
Theo Koutalos 26:54
20 years ago, RIP, gone, both of us 30 years ago, we both probably wouldn’t be here.
Bill Gasiamis 27:04
100%. And then we’ve got 200 or more people on my podcast that would not have made a podcast. If, this was happening years ago, you know, when my parents arrived from Greece, for example. That’s unbelievable. So I’ve actually Googled what a type A dissection looks like.
Bill Gasiamis 27:30
And the it’s not a big deal. When you look at the amount of the artery that gets damaged, like it’s a small amount. But yeah, that being said, that’s a small amount creates a catastrophic leak out of the artery. And therefore there’s no proper circulation, and then all sorts of issues. So the fact that they got that sorted, that’s amazing. So how long did it take for you to get out of hospital after that second surgery? Four days?
Theo Koutalos 28:10
Because the COVID they’re worrying, I tested positive the day after my surgery, but I had COVID a month prior. And I also had my second vaccine a month prior as well. And in Canada, they kind of let go all the nurses that didn’t want to get vaccine. So the amount of nurses working in that ward, were I think it was four nurses for like 50 or 60 patients, something like that.
Theo Koutalos 28:49
And those nurses were run ragged. They were exhausted. You can tell you can just see it in them that they were they were so tired. And they’re trying to take care of everybody. And like, honestly, those four days were brutal. They had me on hydromorphone. I was seeing spiders molding out of the walls, I was high. And I pretty much said I need to get out of here. Like, I’m afraid I’m gonna get sick.
Theo Koutalos 29:21
And they’re like, You need to get out of here. So they said pretty much if I do physiotherapy, as long as I can get in and out of my bed by myself they’ll kick me out. So I started physiotherapy right away. I’m like, I gotta get out of here. I didn’t like the food. They wouldn’t let me shower.
Recovery At Home

Theo Koutalos 29:41
And hydromorphone makes you sweat. And I had people coughing everywhere. And I’m like, I gotta get out of here. So like four days, and then recovery at home was an absolute horror show. It was brutal.
Bill Gasiamis 30:07
Were you dealing with pain?
Theo Koutalos 30:11
The pain was actually not good. And especially with a surgery like that they kind of remove your lungs and then they put them back. So I had to deal with a collapsed lung on the left the first week, and then collapsed lung on the right. And there’s this fluid that comes out and they make you cough. So you have to hold a pillow and cough. The cough feels like somebody is kicking you in the lungs with a boot made out of razor blades.
Theo Koutalos 30:47
It’s horrible. And, I thought that was bad that I think that was one of the worst was the coughing was terrible. I couldn’t sleep. The second that would lay down like we bought pillows to to help us and go myself a certain way nothing really worked. I had to sleep sitting up. And it was just a nightmare. For like two weeks. It was a nightmare. I couldn’t eat. I was pretty much just eating like bananas and oranges. And then the painkillers, they bind you up. So you have a hard time going to the washroom. It was just the first two weeks were really bad.
Bill Gasiamis 31:31
Hardest two weeks of your life.
Theo Koutalos 31:34
I think so. It slowly started getting better. I think after the first month, everything started getting better. I had to stop taking the pain meds because they put me on Tylenol threes. And I had to poop. Blake, I’m like, I can’t take these drugs anymore.
Theo Koutalos 31:55
And then I finally went to the washroom. But it was like I gave birth to like a farmer’s boot. It was just a nightmare. So I’m taking these drugs anymore. I’ll take my protozole and everything they need me to take for my blood pressure, but I’m not taking the pain meds. So I just toughed it out.
Bill Gasiamis 32:21
Yeah, that’s what I did. I stopped taking pain medication. And I don’t recommend anyone does anything that I say or do. I started taking pain medication the second day after brain surgery. And they were telling me you should take it. I’m like, no, no, I want to know what I’m feeling. I want to feel what I’m feeling I don’t want to not feel. And I did it Because I wanted to be connected to my body.
Bill Gasiamis 32:52
So if something was happening, I could say hang on a sec, this is not pain of surgery or anything like that, this is what it is. And even now, I’ll come home, I’ll have a headache every once in a while or really bad migraine. And my wife’s going to say take something for it and I go nah don’t think I’m going to take anything, I’m just going to wait it out. See what it is.
Bill Gasiamis 33:15
Because I feel like if I take pain medication, it disguise as the made disguise, something that I don’t know is happening. And I don’t want to do that. I want to just be aware of it. So I do what we’re supposed to have done. And what people 1000s for 1000s of years before us did. They probably went and rested, they did less they lie down. You know, they go into a dark room.
Bill Gasiamis 33:41
They do all these things, and they just get through it. That’s how I deal with it. I don’t put up with it. However, I do know that it is important for a lot of people. That’s why I’m saying don’t do what I do. It’s important for a lot of people to take medication especially pain medication, because when you’re in excruciating, say debilitating pain for some people, it can cause high blood pressure and then other issues and decrease the recovery rate and make the person worse. So that’s why I say don’t do what I do.
Theo Koutalos 34:16
Honestly, coughing was giving me PTS to be honest with you, I was so scared to cough that I would hold it in and my body would be trembling. Because I’m like, if I cough, I know what it’s gonna feel like and it’s just terrible. And I just had to like tough it out. And I’m like, That’s it. I’m just going to cough my brains out and try to get it all out. Get all the fun that I can get and eventually the time came when like the coughing just stopped.
Theo Koutalos 34:50
But a month. But they don’t really explain like the recovery to you. They kind of tell you a little bit, but they don’t tell you the amount of like torture, that it is on your body, and especially like the torture that it has on my wife. Because she had a hard time. Honestly, after surgery like that I had to be showered, I had to be fed, I was not able to take care of myself. And it really makes you wonder how people that are alone are capable of taking care of themselves after an incident. Like what I had, I don’t know how they would do it. And I felt so thankful that I had her.
Bill Gasiamis 35:52
Look out for you.
Theo Koutalos 35:54
Yeah, I don’t know how you would do it on your own. It’s impossible.
Bill Gasiamis 35:59
You know, I know a lot of people who become caregivers, also they don’t get, a rule book, or they don’t get trained, or they don’t get support. And think about it. You know, there’s stroke survivors who become incapacitated permanently. And then they’re sent home to a loved one. And then their loved ones got to do what your wife did for years. And then no one thinks to check in on that loved one and go, Hey, how are you going? How you doing? Do you need some support? It’s I know, some family and friends do that from time to time, but then they go back to life that they’ve got to get back to. And the caregivers do it really tough, they do really tough, sometimes harder.
Living With Life-Long Deficits
Theo Koutalos 36:44
I have a lot of respect for people who do that for a living. Because I think you’re you have to be a very special person to take care of people like that. You know, it’s a hard job and it’s tough. I feel bad for people who have long-lasting effects. You’ve always known growing up people who have had strokes, and they have a little bit of a drop, I think a friend of mine has her dad lost the use of his left arm or right arm.
Theo Koutalos 37:26
And he was never the same. He couldn’t do the smallest tasks at home and more burden was on his wife. And I think he eventually passed, but I think he passed almost in the sense that like he almost passed with broken heart in a weird way. Because he lost the life that he was so used to living. And he just became such a miserable old guy.
Bill Gasiamis 37:57
It is tough. I mean, most of the people that come on this podcast have their life has changed dramatically. It’s completely different. And they do have the ability to redirect the identity does evolve, and it emerges into something new. But the people that I’ve found that have struggled the most other people who have been a certain way, say for 80 years.
Bill Gasiamis 38:25
And they feel like or they believe that their near death or there’s not a lot of time left. So they don’t try. They don’t put any effort in and they get depressed about this is how my life is going to end or whatever. And I think it’s just a mindset that people have, because sometimes you’ll come across older people who are in their 70s and 80s. Who go stuff this, you know, my leg doesn’t work, my arm doesn’t work, let’s jump out of a plane.
Bill Gasiamis 38:49
And it’s like, they have the same idea that, you know, they might not be around for a long time. But instead of sitting at home wallowing for no reason, they decided, well stuff it. Let’s jump out of a plane if the plane doesn’t kill me, then it’s a bonus. So I get it. I get some people really get down. I remember seeing my dad had knee surgery. My dad’s probably going to be 80 next year.
Bill Gasiamis 39:20
And it was about three or four years ago. And for the first time in his life, he was really unable to be mobile, just because he had knee surgery had to rest six weeks, 10 weeks, whatever it was gonna be. He was so depressed. He became instantly depressed and he was a shadow of himself just because he couldn’t walk and drive the car. And it’s like, dude, just let it rest and heal and sit on your bum for a little bit.
Bill Gasiamis 39:49
In in your 75 years, you’ve had awesome health, everything’s fine. You got a knee that’s worn out. That’s all it’s done. It’s just worn out. They’re gonna replace it. And you’d be back on your feet, try get him to see the positive in that and that six weeks is going to fly by or 10 weeks is gonna fly by and then he’ll be okay. Absolutely some people, you just can’t get him out of it.
Bill Gasiamis 40:16
And he’s so used to being well, that surgery that he did, which was his choice to do it. Because it was painful to not do it, I still he wasn’t able to grasp the concept of this is short term. That’s what what it was. And he was thinking that this is how it’s going to be forever, I won’t be able to walk. Every other person that’s had knee surgery, knee replacement surgery, they’ve all walked. That’s what happens. That’s the next stage. He was mess.
Theo Koutalos 41:00
My dad worked at Ford Motor Car Company, and he ended up getting injured at work. And he broke his wrist, but it was a type of break that they couldn’t really fix and operate on at that time. So he ended up retiring early getting disability, and he kind of lost the use of some of his hand. So he just did everything with the other hand. He’s like, I got two.
Theo Koutalos 41:32
My dad was very positive and he’s like, Yeah, I got this one, I’m okay, I could do everything with this arm. So I kind of grew up with my dad kind of being in a positive state, anytime he would ever hurt himself and he hurt himself a lot, trust me. I’ve seen my dad trying to fix a fan and it fly across the room and come at him and slice his arm. My dad passed a year ago at 95. And he died with tools in his hands. He just never stopped. It’s just the mindset.
Bill Gasiamis 42:10
That’s it, that’s what my dad is and to make him stop was a hard thing, but also stroke, you know what stroke does Theo? It actually interferes with people’s ability to have positivity sometimes, sometimes it also interferes with the brain to the point where they can’t be happy or positive. So depends on where it gets you. So you can understand it as well as it’s difficult to see.
Bill Gasiamis 42:38
But you know, sometimes you can understand it, it’s the people around the person who’s unwell, that’s a sign that they need to step up, and, and grow personally, and develop a different understanding a different way of approaching things. And being devastated is not helpful for anybody, it’s not helpful for the person who’s unwell. It’s not helpful for the person who’s caring. And that’s what I love what you said about your wife, it’s like, you’ll be right, everything will be fine, we’ll work it out.
Theo Koutalos 43:18
I think some people may not know that they’re depressed, or that they’re down, they might just, you know, not notice the change in them. My wife did notice a little bit with me after the surgery, and she’s like, don’t worry about it. Everything’s gonna be okay. Because not working after a surgery like that, and like in Canada, if you’re self-employed, you don’t get help from the government.
Theo Koutalos 43:52
So, we’re lucky because she works. So I was able to, take time off and not really worry too much really, really fortunate. But it happened at such a weird point because like, I wrote a book and it was getting published. And my type A dissection happened a week before my publishing day.
Theo Koutalos 44:23
And I’m like, Oh, my God, I’m like, there’s all this stuff I need to do with Instagram and Facebook, I got to promote my book, and I couldn’t do anything. So the book came out worldwide, every single bookstore, like Amazon, everything, and I was not able to do anything. So things happen.
Loshi and The Battle Of The God Stones

Bill Gasiamis 44:51
Tell me about the lead-up to that. Therefore, it’s taken you some years to get to the point of writing the book.
Theo Koutalos 45:00
Yeah, it’s (inaudible) process for me to write the book. It’s a it’s like a preteen coming of age story about a princess, whose kingdom gets overthrown by underground like slave king. And it’s kinda like Lord of the Rings meets like, Mean Girls in a weird way.
Theo Koutalos 45:23
But all my characters are insects. And it’s my way of kind of talking about, classism and racism. There’s like white beetles and black beetles. And there’s magic and there’s these magic stones and there’s brutal villains, and there’s war scenes. And, so I wanted to do something kind of epic.
Theo Koutalos 46:02
Loshi and The Battle For The God Stones. I think the ring light is making a ring on the cover.
Bill Gasiamis 46:09
Yeah, it looks awesome. The cover is awesome.
Theo Koutalos 46:13
Thank you. So I don’t know, I think life just throws you curveballs. And, my wife, just like don’t worry about it. You know, she’s like, the books gonna do well, because this is the most original thing anybody’s ever seen. Nobody’s ever made something like this. And people will get attracted to it. And her positivity just made me kind of not so nervous about everything.
Theo Koutalos 46:43
And I’m like, yeah, what am I gonna do? I have to recover. But I’m sure there’s times when like, I was down, there’s no way you can go through something like that and be happy. I have a lot going on. My dad was a hoarder. So before all that I was trying to clean up my mom’s house. And as hard for my sister to take care of my mom completely without me because we do everything 50-50. And it was just timing is never good for anything, health-wise, right?
Bill Gasiamis 47:24
And life, just goes on around you, no matter what you’re not gonna pause it, and then get back to the stuff you need to get back to, people’s lives go on, everything happens.
Theo Koutalos 47:35
I was really lucky. I feel really lucky. I have amazing friends, I had people bringing us food. You know, I had friends bringing jello, because it’s the only thing I can eat at the hospital because of lactose, and they kept on bringing me milk.
Theo Koutalos 47:52
But honestly, I was very fortunate, I had friends constantly coming and visiting and, if anything, in a small way, I feel like this incident kind of made me feel better about living in a small way. I don’t feel like I take things for granted as much. I’m more cautious about making sure that I talk to certain people more often. I don’t know, it makes you think a lot.
Bill Gasiamis 48:36
I can relate to that man, I have this thing I can relate to how easily things could have gotten a lot worse for me. And I could have been on the other side because I was on the other side for a little bit the part where, you can’t walk, you can’t do this, you can’t talk, you can’t think, you can’t remember, I went through all of the things temporarily the majority of those things temporarily that some people go through for a lot longer or permanently.
Bill Gasiamis 49:05
And I see people in the street asking for money and all that kind of thing. And I can relate to them. I was so close to being in a position where I was that desperate, you know, that my normal world would have changed whatever that was, you know, like so completely and totally, that it’s not unfathomable that you could end up in that situation. A lot of people that are on the street end up being there because of you know, mental health issues or all sorts of things.
Bill Gasiamis 49:41
So one of the things that I do now is I speak to people that I never would have spoken to before, especially people on the street every once in a while. I’ll stop, have a chat, whatever. Just give them a bit of an opportunity to talk to somebody under normal conditions or I don’t know what amongst other people that I know that I love, who I make sure I reach out to and that are on my mind and all that I just ring and if they’re on my mind, I just go and see them and that type of thing.
Learning About Empathy
Bill Gasiamis 50:11
So it has made me more aware of the other humans on the planet that are around me. And it’s not just about me. And it does feel good to acknowledge somebody who gets no acknowledgement all day, who gets walked past all day, every day, and is just hoping for a few dollars or somebody to say hello, or whatever, it feels good to just do that hoping, in my mind thinking that I don’t want to be, say I find myself in that situation in the future, I don’t want to be looking back and going shit, I should have spoken to all those people when I had the chance. And now look at me, no one’s speaking to me, etc. So I get what you’re saying most people listening to this have a massive shift in their perspective about what’s important and what’s not important in life. You know?
Theo Koutalos 51:02
How can you not? Especially like, when I was in the hospital, I think it was the day after my surgery. And I believe somebody actually had passed in the ward I was in from the exact same thing like type A. And I could kind of see the nurse talking to the wife, and she was bawling her eyes out. And I’m like, that could have been me.
Theo Koutalos 51:40
And it’s just, it’s weird how there’s no aura or anything that happens before something like that incident happens. I didn’t have like a weird feeling in my head. I didn’t have anything. It just happened. There’s no warning. So I’m sure they were just living their normal life. And then maybe he collapsed, or he started feeling his arm went dead or who knows. I felt so bad for her.
Bill Gasiamis 52:19
I have a friend of mine who passed away last three months. And he was in his late 50s. And he’s a pretty healthy guy, tall, strong, fit healthy. All that stuff, you know, doing all the things we always did. And then and then I find out that he’s in hospital. And they didn’t explain it like you did. They didn’t say it was a dissection. They might not have known the words yet.
Bill Gasiamis 52:52
But they said that he had a tear in one of his arteries leading to the heart. And it caused a heart attack. And the heart attack was what got him to hospital. And when he got to hospital, they brought him back they’ve sight they’ve saved him, but his heart was really injured as a result of the heart attack. So it was not working optimally, you know?
Bill Gasiamis 53:18
So I found out that he was unwell. And I sent him a message saying, Hey, mate, you know, video message. Hey, it’s Billy. And everything’s just ringing to say, just sending a message, say hello, the rest of it. And I want you back. And when you get back, you know, we’re going to have some to eat. And we’ll talk about stuff and whatever. It’s a guy that I used to see a couple times a year. And because of a painting company, we had just finished painting his house maybe a couple of months earlier.
Bill Gasiamis 53:48
And then it sends me a message back saying, Yeah, we definitely have to talk about some things, you know, my heart, whatever. And he says, it’s been really beat up, you know, it’s been really beat up. I’m afraid I may have damaged it what he said in his message. And I said, you’ll be right. You know, we’ll see you in a little while. Three days later, his partner posts on Facebook that he’s passed away.
Bill Gasiamis 54:17
And it was something like that. There was no sign there was no idea that there was something going wrong. And he passed away. So that’s exactly what you’re saying. You know, you’re the guy who didn’t, which is fantastic. And then you’re thinking about the other people who did. And I don’t know about you, but I did go through a fair long amount of time where I was like, Why did I survive? Like what’s so special about me? Survivor’s guilt. Did you get that?
Theo Koutalos 54:49
Yeah, a little bit. Yeah, I was kind of in between, of like, not understanding what happened, and trying to like realize, like, am I alive because of the surgeons? Or am I alive because my wife, and like her mom in Africa had like 1000 people praying for me? Like, is there a reason I’m alive right now? Almost like, is there something I’m supposed to do now?
Bill Gasiamis 55:29
That’s a great question, man.
Theo Koutalos 55:31
You know, like, is there something? Am I supposed to keep on writing books? Am I supposed to change a career and go into like nursing? Like, what am I supposed to do? And I still don’t know, to be honest with you. I don’t know what I’m supposed to do. But I think if anything, it’s given me a better idea of faith.
Theo Koutalos 55:59
And I’m learning a bit more about faith. And we grew up Greek Orthodox. So like, we’re very traditional were my wife is like a more modern version of Christianity. And they really believe in the power of prayer. And, I think, in the back of my mind, I just feel like there’s got to be something I’m supposed to do. I just don’t know what it is.
Bill Gasiamis 56:27
I think I know, I think you need to write a trilogy. There’s got to be more to the story of the Loshi and The Battle For The God Stones and then, at some point, some directors gonna go, maybe we can make this into a movie, you know? Animated version. So I think that’s what you’re supposed to do now.
Theo Koutalos 56:54
To be honest with you, like, I think three months after my surgery, my wife got pregnant.
Bill Gasiamis 57:00
Yeah, there you go.
Theo Koutalos Being A Dad After A Stroke
Theo Koutalos 57:03
So I think that’s kind of a miracle, too, because we were trying for a really long time. And then it just worked. We’re doing IVF and it just wasn’t working. And we were spending a lot of money on IVF. And then I had my incident, and fertility doctors like, trauma and hormones make magic. I’m like, oh my God, I’m gonna be a dad now. And I’m 45. And we’re planning our life to not have kids. Like, I spent all my money on records. She’s in Rwanda right now. We travel all the time. And, now I’m having a baby.
Bill Gasiamis 57:54
It doesn’t change much, man. My son’s are 26 and 22. I’m 48. So I was a young dad, I was 22.
Theo Koutalos 58:08
You look great.
Bill Gasiamis 58:10
It’s the greek genes, man. It doesn’t change much. Having kids doesn’t change much. There is a routine that you have to get into, especially when they go to school, and maybe preschool. And there’s a little bit of work. But we took them everywhere. We dragged them to parties, they were sleeping in the corner, on a chair, underneath table. Like, you know, we just took them they were full of energy we were as well, because we were so young.
Bill Gasiamis 58:42
And it’s like, let’s just go, let’s just not miss out on stuff. And the kids are resilient. They survived. You know, we had a routine 99% of the time, but when it came to doing stuff, we just went and did it. Like if you guys need to travel, there’s nothing better than traveling with a little kid. The plane ride might be terrible, but after that it’s fine.
Bill Gasiamis 59:07
It’s okay after that. It’s not a big deal and the child becomes so well adjusted so well rounded, they get to see things that you never saw when you were growing up, you know, you haven’t been to all these places with your parents. Like I never went anywhere with my parents that wasn’t local. You know, so I think you’ll be fine you know, it doesn’t really change your life. It changes your priorities and how you think about things but the order in which you’re doing things I think is cool.
Bill Gasiamis 59:44
Because you’ve got so much life experience, you know what’s important about life, you’ve had that lesson the hard way. I got it the other way around. So I worked like a donkey for decades and too much and too hard and too fast and not enough sleep and not enough looking after myself and missed out on those younger years with my kids.
Bill Gasiamis 1:00:07
And when I was sick, one of my biggest regrets is that I was sick in their teenage years where they were in the zone for camping, fishing, all that stuff, and I was too sick to go. And I can’t get them back to do that with me now, because they are in that phase anymore. Your way of doing it not that there’s a perfect way to get well and become better, but your way of doing it, I think is okay, because you have the really wise lessons that you’ve gained from your experiences, and so does your wife, and you guys know what’s important. And what a great place to take a child, you know, to Rwanda. Is that where your wife’s from?
Theo Koutalos 1:00:55
Yeah. They were there when everything went really bad in 94, came to Canada through refugee status. Brought up here, and now they go there. And it’s remarkable there. I have to tell you, it’s such a great place to travel. I haven’t had so much fun. Like, I go to Hawaii, I go surfing in Hawaii once a while. Rwanda’s just so friendly, and it’s so it’s so futuristic thinking. Their leaders are always thinking about how can we make things better. So everybody can have jobs. They have Volkswagen there, they have beer factories there, they have malls of stores, everything’s evolving so quickly. Very impressive. I have to be honest, going there so much fun.
Bill Gasiamis 1:02:03
And then experiencing a new culture as well, the way they do things a bit different, and it’s a bit quirkier, and you’re not used to it. And that’s why it’s going to be awesome, you’re gonna have a kid and it’s going to be like, what a great thing, you know, to be able to have those massive cultural differences and to expose your child to the vast range of all that stuff from the Greek background and Rwanda background. Man, it’s huge. It’s awesome and the thing is, you’re never ready for kids. There’s no such thing as I will be ready. In 2015. No, you’re never ready for it.
Theo Koutalos 1:02:42
I feel that
Bill Gasiamis 1:02:44
They come along, and they mess up everything. So you’ve got to really just go with the flow. And you’ve got to be really comfortable with, being about somebody else, and not about you.
Theo Koutalos 1:02:57
I’m more excited than anything. I feel like, you know, this is like a new chapter. You know, I’m ready. My dad was 50 when I was born. So my mom was 40. And, so like, I don’t even remember my dad not having white hair, to be honest with you. So I’m on my way. But, both of us lost her dad’s within three months last year. And we both have our values from our parents, but more of our dads, my dad was like, very strict.
Theo Koutalos 1:03:42
And he was always the first to make everything good. If something wasn’t good. If somebody needed help, my dad was the one that helped them. If somebody needed food, my dad was the one that always went grocery shopping and bought that family food.
Theo Koutalos 1:03:58
My dad was always that guy just like her dad, her dad. I think he’s paid for so many people’s University. He’s just one of those guys. You know, and they have a foundation in his name in Africa. And that giving aspect that’s what I want to be like, I really want my book to do really well. So I can create an education fund for people to like go to school, because without school, life’s hard. You need education.
Bill Gasiamis 1:04:33
There you go, man your “What am I supposed to do with my life” is starting to evolve. There’s a child that you need to be responsible for and grow and give good values and pass down those values that you’ve been raised on and that your wife has been raised on.
Bill Gasiamis 1:04:49
And then you’ve got this way to speak to the world, the community, the population, through books in your story, writing You’re telling of stories that, as you know, you know, like through books like Harry Potter and Lord of the Rings, it just drives creativity for the entire planet. And it’s such a massive way to reach so many people. And that’s what we need. We need creativity, and imagination.
Bill Gasiamis 1:05:25
And that comes out of a book that somebody, you know, JK Rowling wrote when she was in hard times, and she didn’t know how it was going to go, and she puts this book out and then captures the whole entire world’s imagination. And that’s what you’re supposed to do, man. If that’s what you’re good at, do that. There’s no better way but through a book.
Pay It Forward

Theo Koutalos 1:05:52
Very true. I just feel like you’re, you’re put into life situations for a reason. And eventually, things just kind of smack you in the face. Like, everything you’ve been through, and with your podcast, I’m sure you’ve helped more people than you probably know.
Bill Gasiamis 1:06:22
It’s impossible to know. And it’s so good that I can’t even contemplate how, big it is, because I never intended it. Let me tell you, I was like you like, what am I going to do with my time now and all that stuff. And I did the podcast for selfish reasons in a nice way. As in, I didn’t have enough of a community around me. And I needed to create one. And I didn’t know how.
Bill Gasiamis 1:06:48
But I do love the sound of my own voice. I love talking. So what I thought was is I’ll meet people all over the world, there’s got to be more than one stroke survivor, that will talk to me. So I did that. And then I thought, I’ll just keep going. And at the beginning, it was really hard. 2015 is when it started. And I didn’t put a lot of episodes in, I didn’t have the health, the energy levels or anything like that I wasn’t organized enough.
Bill Gasiamis 1:07:19
I’m still recovering a year out of my brain surgery, you know, so it wasn’t, it wasn’t that spectacular back then. But it was just one thing after another one little step after the other. And this is how I be creative. This is what enabled me to be creative. But what I didn’t know Theo was that it was going to lead to other things that I had no idea about, I couldn’t have imagined that I would A. have 200 episodes, B that I would be getting invited to speak on podcasts, from people all around the world.
Bill Gasiamis 1:07:53
And also didn’t realize that it was going to spawn a book, which is the book that I’m writing now, which is the work I talk about almost on every episode now, because it’s coming closer. I’m at chapter seven now out of 10. The book’s, working title is Stroke Is The Best Thing That Ever Happened To Me. And how could I possibly have imagined a book title like that before the stroke? Like, how is that even possible?
Bill Gasiamis 1:08:25
And then to find that the book actually came to be because when I was saying that some people sent it back to me. And I reached out to the Instagram community. And people came back to me and said, Yeah, that’s me, too. And I was like, Well, let me interview you. And then I found out that we had these things in common. All of us had these 10 things in common, and that’s gonna make the 10 chapters.
Bill Gasiamis 1:08:49
And I’m not an author of any kind. But I’ve got this thing that’s emerged from something else that I’ve done. And it feels like my purpose now. But I wasn’t setting out to find my purpose. I was just doing amazing things and going, what the hell, I’m here for a short time. I may as well do it.
Theo Koutalos 1:09:12
I think when it’s meant to come out, it spills out. And to be honest with you writing this book. I don’t even read books, so for me to write this book that is so different than anything I’ve ever done. It just came out like it was meant to be. It’s probably what you’re going through. It’s just meant to come out. It’s meant to be on paper, and it’s meant to be read. That’s all it is. I feel like most things happen that way. Where if it’s meant to be it just happens.
Bill Gasiamis 1:09:56
I’m going with it. I don’t mind it. It’s the hardest thing I’ve ever done is write this book, it messes with my brain every single day. And when I’m not writing about it, it’s the only thing I’m thinking about. Far out, it just occupies so much of my brain and I need to get it done. You know, and I do do it as much as I can.
Theo Koutalos 1:10:17
I keep a notepad, like piece of paper in my pocket. And I’m always running down ideas, because I’ll forget so quickly. And, it’s funny how things happen, right? I really believe when something’s meant to be, you’d almost don’t have control in it. It’s just gonna come out. I felt that way with some of the art that I’ve created, especially with Loshi It’s just meant to be.
Theo Koutalos 1:10:20
I was meant to write the story. And it’s weird I found myself diving into something that I had to do almost six months of insectology. To understand insects, all my characters are so many different insects. And I had to figure out like, names, create a language. And I wanted the language to represent certain insects and like names have to represent certain insects. And I was very influenced by my wife’s African family. So I copied a lot of like African names. But there’s a connection to everything. My book is like a big quilt of ideas, and connections, you know, and it’s just meant to be, it just came out.
Bill Gasiamis 1:11:34
Books tend to be there, they grab things from everywhere, and they reorder them in a way that’s unique to your version of it. And then they create this thing with words, that’s never been created before. Because there’s an infinite number of ways to reorder words and to tell the story. And that’s what you need. You need life experience to bring them all together, or you need an amazing imagination and creativity. I never had any of that. But now I’ve got life experience.
Bill Gasiamis 1:11:50
Like a door has been open inside of you. And it’s all coming out. It’s like a gust of wind of ideas that just kind of get blown through a window. And you’re just trapping it somehow. That’s how I felt when I was writing.
Bill Gasiamis 1:12:43
And with your art. Is that your cover then? Is that your artistic work on the cover?
Theo Koutalos 1:12:49
Yeah I have a bunch of different stuff scattered. I have nowhere to put it. So it has to go on my walls until I sell stuff. I have separation anxiety. So I have a hard time selling my art.
Bill Gasiamis 1:13:02
Wow. So you create it. You love it? And then you can’t sell it? Because you love it. I want it.
Theo Koutalos 1:13:08
Yeah, yeah. Pretty bad for that. But my wife’s made me sell some stuff. She’s just like, we’re running out of room. So I have, we have a university in our city McMaster University, and they have an Innovation Park. So I have a big piece there. And think it’s there till October. And I’ll probably sell that, unfortunately. But it’s good to have the money.
Bill Gasiamis 1:13:38
So you look sad about it?
Theo Koutalos 1:13:41
Yeah, I don’t like selling my art. I get very attached to my art.
Bill Gasiamis 1:13:47
Some people have a problem selling their art because they think it’s no good or who would want to buy it?
Theo Koutalos 1:13:54
Also having people have my art because I’ve sold about maybe 150 pieces. And I guess my biggest fear might be that it’s going to be in somebody’s closet. And not on a wall. I’ve always had that fear. But like, I see people posting pictures on Instagram and in the background. I see my painting and I’m like, okay, it’s okay, it’s good.
Bill Gasiamis 1:14:29
Maybe you have to have terms and conditions with the sale of your art, if it ends up in a wardrobe, or in a cupboard, please pass it on to another person who’s going to appreciate it.
Theo Koutalos 1:14:41
I can’t live with that. That’s brutal. Like somebody baring my book. Like what are you doing?
Bill Gasiamis 1:14:49
That’s hilarious. Do you know that books do have to live on a bookshelf for some time though, after they get read, right?
Theo Koutalos 1:14:54
Yeah, of course.
Bill Gasiamis 1:14:57
But you’re looking at the book cover and you think that’s a piece of art as well.
Theo Koutalos 1:15:01
Yeah, of course, I got published by book baby. And this took about a month of us, like, disagreeing and agreeing and they were getting very frustrated with me. And I’m like, it’s got to be perfect. And then they gave me a different artist and he hit it out of the park. He did a great job.
Bill Gasiamis 1:15:31
Okay, so you were advising on the cover?
Theo Koutalos 1:15:34
Absolutely, I’m like, it’s got to be perfect. And book baby is owned by Amazon. Right? So it’s still being self-published. But they do all the distribution. And they get it in every single book store. Barnes and Noble target. Everybody’s carried it right. So but Amazon’s probably the number one way people I think buy books these days. I think most of my sales have been Amazon. And I think I’ve sold more digital copy than paper copy, which is normal. I think these days?
Theo Koutalos 1:15:45
Well, it’s 10 bucks for a digital copy and 24 bucks for a paper copy. And I mean, everyone’s got a tablet these days. And on your tablet you can carry around hundreds of books, and it doesn’t get heavier.
Theo Koutalos 1:16:33
I’ve had people read my book on their cell phone.
Bill Gasiamis 1:16:39
Yeah. And is there an audio version coming out?
Theo Koutalos 1:16:43
Um, I’d like to get on that. Actually, I would, I would love to do that. I had a friend who actually passed away from COVID. Three years ago, his name was Nick Cordero, he was a Broadway actor. And he was supposed to do audio for my book. And it’s really sad, because I really wanted him to do it. And so I will plan on doing that audibles contacted me. And they want me to kind of get going on picking a voice for the book. So I’ll probably do that. Pretty soon.
Bill Gasiamis 1:17:18
How come I heard about Nick Cordero when he passed away?
Theo Koutalos 1:17:22
It’s all over the news he was everywhere. He is maybe one of the first celebrities to get COVID and pass away.
Theo Koutalos Publishing The Book
Bill Gasiamis 1:17:34
Yeah, I did hear about it some time ago, that rang a bell when you said it. I know. We’ve spoken before. But that is sad. So this book, was it something that you pitched to Amazon? Was it something that you just wrote and then sent it to them? Was it finished when they saw it?
Theo Koutalos 1:18:01
I had a very hard time getting it published. I think because they couldn’t really take my book and say, Yeah, this is a kid’s book. Because there’s war in it. There’s battle scenes, and they’re like, I don’t think this is for kids. This is more for teens. And so like, publishing companies had a really hard time trying to figure out how are we gonna make money from this?
Theo Koutalos 1:18:32
And I’m like, how are you gonna get it, if you don’t read it? They don’t read your book, nobody reads your book. So I thought to myself, if I’m gonna get this published, I’m gonna have to do it myself. I’m gonna have to spend my own money. And I saw an advertisement for BookBaby.
Theo Koutalos 1:18:51
And I’m like, I’m gonna just do it. And it was probably the best decision. I would love to have been published by a company, but they’re bombarded by submissions every day. So, I give myself six months of trying to get published. Even now, I’m getting emails of publishing companies denying me still because I went to so many.
Theo Koutalos 1:19:25
And now they’re just like contacting me saying, we don’t think this is the right fit for us. And I’m like, I’m already to published b**** so it’s like, yeah, whatever.
Bill Gasiamis 1:19:38
Yeah. I know. There’s so many people putting out really good work that these guys would have an unbelievable time picking the best book.
Theo Koutalos 1:19:49
They want to make money. And if it’s not self-help, or it’s not like something involved with like the woke culture, they don’t wanna touch it. That’s what’s happening now. I was told by a couple do you think you would be smartest? Maybe you made some of your characters this way or that way? And I’m like, No, I don’t know what it’s like to be like that. So how am I gonna write that perspective? Then I’m lying.
Bill Gasiamis 1:20:29
Yeah, then it’s not your best work anyway, you can’t write something that’s not yours.
Theo Koutalos 1:20:35
It’s not true. I don’t want to do it.
Bill Gasiamis 1:20:38
I’m researching every day, I’m researching the different things that I need to understand and learn before I put it into a chapter. And sometimes I have to rewrite a paragraph three, four or five times because when I research it, I’ve still got the words that I read from the other person, or the interview that I heard in my head, and it doesn’t go on the page. Like it can’t go on the page first. It’s not ethical, right? But also it’s not me, it would not sound like me, if I did something that wasn’t my words, or wasn’t me or my thinking that I’ve got to attach my thinking process to it, and my expression to it. And if I just try and plug it in, it doesn’t work.
Theo Koutalos 1:21:23
You know, what, I didn’t have a hard time picking, like my story to have a female hero. I love female heroes. You know, and I could write the perspective of a girl because I have nieces, I have sisters, and like, I’ve been surrounded by strong women my whole life.
Theo Koutalos 1:21:46
So it was easy for me to write that. But I don’t know what it’s like for somebody to be trans or like gay, or because I don’t have that in my life. So like, I can’t write that perspective, because it wouldn’t be lying. I was annoyed by them trying to hint at me to change characters, like gender. And I’m like, they’re insects, I was getting kind of frustrated, and I’m just gonna do this myself, if I want it to be true to what I need it to be. And to get my message across. I need it to not be changed.
Bill Gasiamis 1:22:29
And what shits me about that is corporations taking advantage of a situation, or a movement or something like that and monetizing it. They’re the worst at it, you know, it’s like, come on, like seriously.
Theo Koutalos 1:22:44
I’m not into politics, I’m not into that stuff. I kind of stay away from that stuff. And if I like somebody, I liked them because of who they are. I don’t care if they’re this or that it doesn’t bother me. And nothing really bothers me.
Bill Gasiamis 1:23:03
That’s it. I was listening to a podcast by one of my favorite authors, a guy called Ryan Holiday. And he was talking about how after Mark Manson, who’s a friend of his, wrote a book that was titled something about not giving a fuck, or you started to see a plethora of books coming out with the word fuck on the title. It’s like originality, you know, these guys are going well.
Bill Gasiamis 1:23:36
This is interesting. Somebody’s had the audacity or the balls or the guts to put the word fuck on a title. And what we’re going to do now is we’re going to put it on every second book that comes out. You know, it’s a bit silly, I think it’s like that he was like, be original. Just come up with your title, whatever it is, and you don’t have to capitalize on the movement of swear words on the book title.
Theo Koutalos 1:24:03
Publishers look at trends. They make money. That’s how they make money, as they follow trends. So right now, there’s trends going on. And eventually, it’ll change and there’ll be something else. And we live in North America. So we’re bombarded by media. It’s almost like we’re drowning in American media constantly with the whole left and right, Trump and I know it’s suffocating.
Bill Gasiamis 1:24:34
It’s something that happens here in Australia. Other than local news. The majority of our news comes from the United States. It’s just ridiculous. I swear to
Theo Koutalos 1:24:46
I swear to God, if there’s another school shooting, I’m gonna lose my mind because for some reason, these people are constantly talking about guns. And it’s not just gun, there’s no help for mental health. That’s the biggest problem that I see in the States right now, is that so many of these kids come from a horrible environment. And they don’t get help. But they can go to Walmart and buy a gun.
Bill Gasiamis 1:25:20
I’ve got my views about that as well. But I don’t want to upset anybody, because I’m not particularly about upsetting people’s specific beliefs. Like if you enjoy using guns or whatever you do with them, like, that’s fine, I’ve got no issue with that.
Theo Koutalos 1:25:36
My dad took me hunting, all the time. We grew up with guns. But my dad also was in a war and used guns for different and he always didn’t like, I wanted to join the army. When I was in high school. He would not let me go, he went on Monday, go to cadets, he wouldn’t let me do anything. Because he didn’t want me to have the problems that he had
Bill Gasiamis 1:26:01
The trauma.
Theo Koutalos 1:26:01
Trauma, right and understand more now, I kind of resented him because I really wanted to go. And now I get it, I get it. We didn’t know what PTS was when we were young, he would just throw the couch across the room or smash the TV. And then we just have a brand new TV.
Theo Koutalos 1:26:20
You know, we didn’t really understand PTS. And now I understand and I look back and I think like, oh my God, my dad has severe PTS. You know, and he saw a lot of bad stuff. Germany, the Italians were there, the Germans were there.
Bill Gasiamis 1:26:44
Yeah. And they fought against each other. It’s tough, man. Those guys, they did a tough thing and that’s the thing we need to learn from them. And I think it’s great that we have, like I said, those role models that we can take lessons from, pass on to our kids, and then just accept what the cards we’ve been dealt with, and then try and make good with them try and play a good hand with those cards.
Theo Koutalos 1:27:10
I really value where we live. I think we’re really lucky to live where we live. And I know that people don’t really look at things that way, because they may not have that type of family history of having parents lived through war. Even my mom was very young, when Germany invaded.
Theo Koutalos 1:27:37
She remembers the bombings and the piles of bodies, so there’s a different aspect to like living here for us, knowing our parents stories, and I see a lot of kids that are young, that just don’t get it. And they just don’t know how lucky they are.
Bill Gasiamis 1:28:01
That’s kind of a good thing, too.
Theo Koutalos 1:28:04
Yeah, the way it is.
Bill Gasiamis 1:28:06
Yeah, and that’s the thing I try my kids to see, and they’re completely oblivious of all those types of things. They’ve lived in Australia, in Melbourne, and it’s an amazing place to grow up and live. And I’ve never been exposed to any of that stuff. And my parents, and where my wife’s parents came from, war torn Greece, they were born in the 40s. So they lived in poverty, and then they saw all this stuff that the kids, nobody should ever see, right.
Bill Gasiamis 1:28:39
And then they come here, and they haven’t got resources. And I’m struggling as 16 17 18 year old to relate to my dad or my mom, and they’re raising me in the 1960s style of Greece, where they got raised. I mean, none of that shit applies to me. And I don’t know how to tell you nicely. We live in Australia, it’s a completely different world.
Bill Gasiamis 1:29:03
We don’t have the trauma that you guys have. And I really struggled to relate to them for a really long time. Until somebody said to me, you know, “they did the best they could do with the resources they had available to them.” And it’s like, “wow, that’s huge.” But I let it affect me for too long, because I wasn’t smart enough or educated enough about that stage to understand what their troubles were, how they struggled to bridge the gap between the culture that they left in the 60s, and that I was being raised in the 80s.
Bill Gasiamis 1:29:46
There was not only was there a generation gap, that was a cultural gap that they were trying to bridge and they had no idea how to bridge, so the only thing they taught us was what they knew which was, you know, the Greek church way, the family way, which I never regret. That’s awesome.
Bill Gasiamis 1:30:03
We never hung out with other people because they couldn’t relate to them. So they will always hang out with 25 million Greek people. And it was strange when I started to go out into the world at 16 17 18 and come across people that weren’t Greek, and how they do things differently.
Theo Koutalos 1:30:21
I’ve kinda rebelled against it. I didn’t want Greek friends. I didn’t want to go to church anymore. I didn’t want that lifestyle. I was kind of like, I don’t want to go to church anymore. I want to hang out with people who are into Metallica, Guns n’ Roses, that’s what I wanted, you know. And then once 91 hit and Nirvana got big and the whole grunge thing. I was so anti Greek man, I was coloring my hair blue.
Theo Koutalos Rebelling Against The Culture

Theo Koutalos 1:30:49
So I really rebelled against it for my younger age. But as I got older in my 20s, then we started going to the Greek festivals again. I started understanding my dad a bit. Like, honestly, I must have been the only eight-year-old that I knew was busting out bullets out of rabbits. Because we went hunting, none of my friends were gutting rabbits at eight years old. I guarantee you. I was the only one of my friends that know that smell, that gutting smell.
Bill Gasiamis 1:31:26
Yeah, man, that would be unique for sure.
Theo Koutalos 1:31:29
And my parents never let us sleepover in anybody’s house. I wasn’t allowed. And really, I have two older sisters. And they weren’t allowed out until they’re 21. I was going out till four or five in the morning in high school because my parents were exhausted. I was going to Lollapalooza. I was going to raves. They’re tired. I just lucked out. You know, I was so lucky.
Bill Gasiamis 1:32:01
And the girls did get treated differently even in our family. Not in my family because it was two boys, but in the extended family that had girls, girls really did it tough, especially the firstborn.
Theo Koutalos 1:32:17
Oh, yeah. Very different
Bill Gasiamis 1:32:19
Overprotective, not trusting, they used to make them feel guilty over just being normal human beings liking boys or putting a poster on their wall or all sorts of things. They struggled so much to break the old 1960s mentality and what shit me the most. And I still raise every once in a while is that my parents in their teenage years or early 20s left Greece, and everyone behind came to Australia with nothing, nobody to tell them what to do, how to do it, where to sleep, who to sleep with. They got no one looking over their shoulder. And then they did the exact opposite to us. They just went next level.
Theo Koutalos 1:33:21
So true. At that time. You either went to Australia or you went to Canada. And by the time my dad was ready to leave. Australia had closed their border. So my dad ended up going to Canada. And all I remember my dad saying one of the first thing he did, was he went to the farmers market because he wanted to try all the food that he’d never seen before.
Theo Koutalos 1:33:52
So he ate a banana for the first time, he had all these melons for the first time. And he was in heaven. He was like food heaven. He’s like, I didn’t eat lamb or goat for years. I just ate steak and chicken. It was like a dream come true. Oh, so funny to listen to his stories.
Bill Gasiamis 1:34:19
I’m gonna tell you a story of my dad. This is so far off the podcast topic, but doesn’t matter because I think people will appreciate our stories. So my dad arrives in Australia as a young kid in his 20s and his mate say to him, “let’s go hunting.” So Melbourne is a very small city back then, maybe there’s a couple of million people in the entire city. And there’s tram services.
Bill Gasiamis 1:34:42
So the Trams run throughout the Melbourne Central Business District and into the outer suburbs in some, some lines run into the outer suburbs. So he gets on the tram with a rifle. And he just gets in and walks on the tram and sits down goes to buy a ticket from the conductor. And then sure enough, a couple of stops down the road. Two police officers enter the tram, and they approach him. And they asked him in English.
Bill Gasiamis 1:35:17
“What are you doing? Where you’re going?” but he doesn’t speak English. So they’re pointing at the gun and he’s trying to explain to them what he’s doing, where he’s going with a gun, right? So what he does, he sticks his fingers on the top of his head to imitate a rabbit. And he starts waving his fingers to say “I’m going rabbit hunting.”
Bill Gasiamis 1:35:50
They grab him off the tram, and they throw him in the back of the police car, take him down to the local station to interrogate him. But they’re getting nowhere because they can’t communicate with him. Because he speaks Greek only, you know. So they get this other Greek cop to come in and do the translation.
Bill Gasiamis 1:36:08
And he reckons the Greek cop ripped shit through him. Where do you think you are? In the village? You can’t just take a gun onto a tram, and the rest of it, he was dumbfounded and devastated anyhow. Because now they had taken him to a police station somewhere where he didn’t know where he was. He couldn’t get home, he didn’t know how to get home.
Bill Gasiamis 1:36:29
So he made the coppers drop him off back to his house. And that’s how he got away with it. And he never ended up going hunting with the guys that day. And he has a story to tell. So that’s what they were dealing with, you know, so I relate to a lot of the stuff that you’re saying and the difficulties that they went through. And that’s why what we spoke about earlier, you know about your wife, refugees, and all that kind of stuff, they come to another country, they come for a better life, they try different things.
Bill Gasiamis 1:37:01
They don’t get it right all the time. But, man, some of them have been through hard times. And I think compassion is such a cool tool to use to sort of help people just get through, you know, the tough stages and, and settled into something completely different man that they’re not experienced with or they’re not used to.
Theo Koutalos 1:37:22
My dad came here and did a lot of different jobs. My mom came here and did different jobs. And they didn’t have the education. They learned these jobs and made it work. You know, and I don’t know, it’s funny, like my dad was a very, very, very intelligent man. He didn’t have the education to prove it. But you can give my dad any math equation. And he got it like that.
Theo Koutalos 1:37:52
He just had that that intelligence naturally. And almost makes you wonder what would have happened with him if he did go to university and he didn’t grow up in the war. And he wasn’t a soldier. You know, because my dad could like build a car with his hands.
Theo Koutalos 1:38:10
My dad roofed the house himself. My Dad fixed everything himself. He would never pay somebody to fix something ever. You know, he did his own oil changes himself. He did everything himself. You know, and he never eat at restaurants. If him and my mom didn’t cook it, he wouldn’t eat it. He lived here for so many years and he never had a Big Mac. Like he’s just so strict in his ways, you know?
Bill Gasiamis 1:38:41
And it’s a great thing to emulate to a point because you can see how healthy he was for such a long time right? He had longevity because they ate clean food that was cooked at home it was always probably fresh ingredients. And they never outsourced their nutrition to other corporations who don’t have your best interests at heart. They just want to sell you a Big Mac and convenience.
Theo Koutalos 1:39:06
She prefers tomatoes were always growing in the backyard. It’s just the way that they lived.
Intro 1:39:14
Yeah. And how much time they seem to have time to do everything these people. There never was not enough time to do the backyard. My parents entire backyard is a garden. Now that we’re not living at home, they just converted it all into a veggie patch. And they’re in there every single day, all the year, every season. We’re always getting fresh fruit and vegetables given to us so we can take home and eat. And it’s a great thing to see and try to emulate although I don’t succeed.
Theo Koutalos 1:39:55
I’m not as good as my dad either.
Bill Gasiamis 1:39:59
It’s time consuming. Theo man, it’s been really awesome getting to chat to you, learning about your story and sharing the things that we have in common. I really appreciate it. I love the fact that you got here, and you’re doing what you’re doing. And, that you’ve overcome what you’ve overcome. You’ve written an amazing book, you got a kid on the way, man I look forward to following your journey and making sure that you’re releasing awesome things and doing great stuff. And it’s great to connect with you, man.
Theo Koutalos 1:40:38
Yeah, man, thank you. I appreciate this. This has been great. I love learning about you too. And I love having what we have in common. And it’s great to actually talk about it and talk about something that somebody else has experienced, because I think it’s easier to talk about anything related to stroke and surgery, ywith somebody who knows what you’ve gone through, you know?
Bill Gasiamis 1:41:08
Yeah. And that’s why I put it out there on Instagram a little while ago, why I said If you’re somebody that’s had a stroke. Please reach out, because I’d love to interview you just thinking that nobody would respond I didn’t really think that I would get a lot of responses. But I got 30 or something responses, which is more than I expected, so I became overwhelmed. But I’m good with it now. That’s what I’m hoping it’s going to do is I’m hoping that it’s going to allow people to have the courage to reach out to, if not me, somebody else and say, you know, I’ve had a stroke and can we talk about it, because I know that you might have had one or whatever.
Bill Gasiamis 1:41:58
I think that’s what the purpose is. That’s why I did it. Because I needed that. And I wasn’t finding them in my backyard in my next door. So I just did that. And the world’s pretty small now we can bridge massive spans of ocean and land just with Zoom, you know, so reach out. You know, there’s plenty of people doing podcasts these days that are talking about these types of things, and they’re always looking for guests.
Bill Gasiamis 1:42:23
So if you reach out to them, they’re gonna say, yes, they’re gonna want to hear your story. Because every story is unique. It’s worth telling. And it does something for you, when you tell it like it feels good when you tell your own story, and somebody listens. And then you receive an email and somebody says, shit. Thanks so much for sharing your story. You know, it made me feel like I’m not alone or whatever. That’s what it’s about for me. Be well, thank you so much.
Theo Koutalos 1:42:54
You too thank you so much. Thanks for having me.
Bill Gasiamis 1:42:57
Well, thanks again for joining us on today’s episode, I hope you enjoyed the chat with me and Theo about all things stroke, and then you’ve got a little bit of an insight as to what it’s like to be A first generation Australian, and in his case, a first generation Canadian from a Greek heritage.
Bill Gasiamis 1:43:21
It’s unbelievable how much people that are, in my situation, and in Theo’s situation have in common about their upbringing, and all the things that they have learned from their parents. And I find that that’s a very common theme. A lot of those themes are very common in discussions that I have with people from all backgrounds that have parents who immigrated from their home country to a new country for a better life.
Bill Gasiamis 1:43:50
Now to learn more about my guests, including links and to download a full transcript of the entire interview, you can go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:44:10
If you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. Sharing the show with family and friends and social media will make it possible for people who may need this type of content to find it easier.
Bill Gasiamis 1:44:31
And that may make a massive difference to someone that’s on the road to recovery after their own experience with stroke. So if you would do that, that would be really amazing and fantastic. Thanks again for being here and listening. I really appreciate you and I am looking forward to bring with you on the next episode.
Intro 1:44:50
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments protocols discussed During any podcasts are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:45:07
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:45:30
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:45:45
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:46:09
Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Recovery from A Type A Aortic Dissection – Theo Koutalos appeared first on Recovery After Stroke.
1 hr 47 min
August 15, 2022 Transient Ischemic Attack (TIA) Recovery – Kevin Snit Fitzpatrick
Life-long musician Snit Fitzpatrick experienced a transient ischemic attack at age 64 and is helping to raise awareness about the situation he found himself in the hope that others will be more prepared than he was.
Snit’s Dog & Pony Show
Instagram
Highlights:
01:32 Introduction
06:48 Transient Ischemic Attack (TIA)
09:16 Time Management After A Stroke
12:02 Asking The Right Questions
19:07 The Follow Up
28:31 A Life-Changing Situation
34:57 The Snit Show
44:30 Fear Of Driving Long Distances
47:00 Wrong Medication
Transcription
Snit Fitzpatrick 0:00
We have another drummer friend. And unfortunately, he did the “I’m gonna lay down and take a nap” routine. And he called Mark like three days later, and it was way too late. So obviously, I know it’s preaching to the choir for people to go, you have to act fast. But if you go to the hospital and it wasn’t a stroke, they’re not going to berate you for coming in there.
Snit Fitzpatrick 0:26
They’re going to say, Well, luckily, you’re okay. But it was good that you came in. And I was at the dentist today and my dentist was talking about I guess it’s a male thing like no, I’m okay. I’m not, you know, I don’t need to do anything.
Intro 0:46
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:59
Hello, and welcome to episode 208 of the recovery after stroke podcast. If you are a stroke survivor with a story to share about your experience with stroke, and you have been thinking about reaching out to be a guest on the show but we’re waiting for the right time to reach out? This is it.
Bill Gasiamis 1:14
If you go to recoveryafterstroke.com/contact you’ll be able to find a form that you can fill out to apply to be a guest on the show. As soon as I receive it, I will respond with more details on how you can choose a time that works for you, for us to meet over zoom.
Introduction – Snit Fitzpatrick

Bill Gasiamis 1:32
Now my guest today is Kevin “Snit” Fitzpatrick, a lifelong musician who noticed something weird happening to his arm and went to the hospital within one hour of the first symptoms presenting themselves. Kevin Fitzpatrick, welcome to the podcast.
Snit Fitzpatrick 1:49
Thanks for having me.
Bill Gasiamis 1:50
Thats a very good Irish name. Kevin Fitzpatrick.
Snit Fitzpatrick 1:55
Yes indeed.
Bill Gasiamis 1:57
Kevin, thanks so much for reaching out to be on the podcast, tell me a little bit about what happened to you.
Snit Fitzpatrick 2:04
Well, in April 2018, it was a Tuesday night. And I just got home from work, I play in a band, and also work retail in a music store guitar shop. I had a real busy weekend, worked on Saturday, I had a long show with my band Saturday night, I had a long drive Sunday to play at a place I played out a lot which goes to what something I read on your website.
Snit Fitzpatrick 2:33
But by Tuesday afternoon, I came home from work, it was uneventful, I felt fine. Probably turned on to the Braves game and next thing you know, I started to feel some numbness in my arm. And my first thought was like what’s going on here? Something’s going on here.
Snit Fitzpatrick 2:52
And then I got up and it got worse. And my first thought was call 911. So I called 911, and I said, I think I’m having a stroke. And I’m very fortunate Bill that I live about 10 minutes from the Houston Medical Center, which is one of the best medical centers in the world.
Snit Fitzpatrick 3:19
So the EMT showed up, there’s gonna be some humor in here too, because some of it’s funny now, but where I live is behind a place where I was sitting right where I’m talking to, you know, when I had to stroke.
Snit Fitzpatrick 3:37
The place in front when the EMT showed up, I was struggling to get dressed. And I could see the lights flashing because it was dark and literally fell down once and then finally got like some shorts on and a shirt. And I kind of crawled to the door and open the door and I said I’m back here.
Snit Fitzpatrick 3:58
So they come inside and one of the guys said you should probably get a posted sign with your with your address closer to the street. I said fine, we’ll stop at Home Depot on the way to the hospital. So they hooked me up, they started taking my blood pressure and at the time Bill in 2010 I had an incident where I woke up one day and felt dizzy I went to the ER my doctor put me on blood pressure medication then.
Snit Fitzpatrick 4:33
But eventually he kind of weaned me off of it, when I had the stroke I wasn’t taking any blood pressure meds at all. So when they got me to the hospital it was just straight out of a movie they wheeled me in there’s a bunch of people looking down while you’re looking up and they’re this that the hour and they wheeled me into this room.
Snit Fitzpatrick 4:55
And the first person that came in was a doctor and She said, you’ve had a stroke. And I was hoping that a friend of mine was going to join us. He is actually a neurosurgeon at the hospital, where I was taken to. And we’ll get to his story more later as we go along.
Snit Fitzpatrick 5:16
But this doctor, she immediately told me that I mean, Memorial Hermann is a great system. I’m not saying anything bad about them, because they took care of me and you could see I was fine. But she gave me some information and made me feel that it wasn’t correct. She said, we’re going to train you to walk in three months.
Snit Fitzpatrick 5:36
And she said, we’re going to give you a medication, which turned out to be TPA, which I didn’t know anything about if we can get your blood pressure down. So I was laying there, and the gentleman next to me had fallen off a roof.
Snit Fitzpatrick 5:52
And he’s in agony, and I was just sitting there, I was proud of myself, because I’m pretty A personality. But I was proud of myself, because I was pretty calm. And I was just basically, feeling well, I thought about the last song that I played, I thought about how am I going to feed myself because I’m a bachelor, I live by myself.
Snit Fitzpatrick 6:13
And I just laid there. And eventually, it was about 9:30 at night when they took me into the room. And when it first happened, it was probably I got there within an hour, I got there quick, real quick, because I’m close. I knew it. Like I said, if it would happen two days before when I was 50 miles from here or driving home. There’s no telling what would have happened. I’m so lucky that how it happened was right here.
Transient Ischemic Attack (TIA)

Snit Fitzpatrick 6:45
So yeah, they took me to the emergency room. And I’m pretty well aware of the timeframe and how it went. But eventually, I guess they had given me the TPA, but didn’t tell me because another doctor came in a couple of hours later, and I started to get feeling back, and it was this side, it was all this side.
Snit Fitzpatrick 7:12
And she said, how are you doing? I said, better, I’m getting feeling back. And she says, that’s great. That means the drug worked. I was like, what drug? And she said, we administered this drug called TPA, I said well, the first doctor never told me that.
Snit Fitzpatrick 7:28
She said, we’re going to try to get your blood pressure down. So then it was about three or four in the morning, they took me to have a CAT scan and all that. And then checked me into the room early that morning.
Bill Gasiamis 7:44
Wow. So you know, when you were lying down there in the hospital, and the guy’s in agony, and he’s freaking out, and you’re sitting there. And you’re thinking about how you’re going to feed yourself and how you’re going to go about your life? Were you doing problem-solving? You were thinking well, my arm doesn’t work, I’m gonna have to find a new way to do this? What was the thinking process?
Snit Fitzpatrick 8:08
Well, going back to it, like I said, it was more reflective about what happened, I’ve been a relatively healthy person. I was a smoker, but I quit 10 years in 2012. So at that point, I’ve quit for like six years. Like my barley pots and I play in a band, but but I did have a pretty rigorous schedule.
Snit Fitzpatrick 8:39
There’s another real important thing I’ll get to in a minute about what they thought might have caused it. But no, Bill, I was being more reflective on what had happened other than questioning myself going, how am I going to do this, but I didn’t have any answers at that moment.
Bill Gasiamis 8:53
Yeah. How long have you been playing in bands? What kind of music do you play?
Snit Fitzpatrick 8:59
I’m 68 now, I was 64 when it happened, I started when I was 15 or 16. I was a drummer for years. On a road with bands coast to coast. I grew up in New Jersey, I lived in Atlanta. I call Atlanta, my spiritual home. I’ve been in Houston for 28 years.
Time Management After A TIA

Snit Fitzpatrick 9:16
When I got here I joined a road band and we played literally everywhere. We were like one of those “almost made it” bands, you know, real popular around town. And then around 2000 I started my own band as a singer guitar player. And I kind of do both now. But believe me I’ve slowed my schedule way, way down because I had to.
Snit Fitzpatrick 9:38
When I try to do too much now I’m still working a full time job. Retail guitar store, but I can tell when I’m pushing it too hard. Recently I have work on Monday. Have a gig Monday night. Work on Tuesday have a gig Tuesday night.
Snit Fitzpatrick 9:56
I told the Tuesday night guys I said I can’t do that. That’s pushing too much. And they understood it. So sometimes I think I can do more than I can. But, you know, I’ve been a pretty much a life have been playing music, mostly professionally for my whole life.
Bill Gasiamis 10:14
Did you lose the ability to play for that short amount of time when the injury first occured?
Snit Fitzpatrick 10:21
This happened on Tuesday. I think it was April 17. I walked back into work on Friday. And the people I work with thought they saw a ghost. They were like, what? And I’m like, I’m good, I’m good. And I had a gig that Saturday.
Bill Gasiamis 10:38
Wow.
Snit Fitzpatrick 10:40
And at a place that was quite a bit of ways, but my drummer drove and it was one of those low-key kind of gigs. And the guy that ran the place had health issues, too. But yeah, I mean, people that saw me were like, wait a minute, didn’t you just have a stroke?
Snit Fitzpatrick 10:56
I was like, yeah, set of transit, ischemic attack. And before I did, that gig, probably why I did it. While I felt good about doing it. I told you about my friend, his name’s Mark Tannenbaum. He’s a neurosurgeon at Memorial Hermann, he came over here and I think you’ll find this really fascinating because when I read your your story, it seemed like you wish you had gotten more information about one of the things that happened to you.
Snit Fitzpatrick 11:24
Well, Mark, being in the Memorial Hermann network, was able to come over to my house, get his laptop out and go, here’s your brain. Here’s what happened. And he explained to me a lot more than they did at the hospital, because I guess they just figured, well you’re fine, see you later.
Snit Fitzpatrick 11:42
And, he pointed out what, as far as I can recall, just a lot of things that he saw that were positive. He told me not to worry, he said that I was lucky. But at the same time, he didn’t anticipate me having any more issues. Certainly not then. And he was right.
Asking The Right Questions
Bill Gasiamis 12:02
That’s brilliant. I love that. Because one of the things that you can get from my website, if you go to it recoveryafterstroke.com is you can download a guide, that’s called seven questions to ask your doctor about your stroke.
Bill Gasiamis 12:16
And the purpose of it is exactly that. It’s so that people when they go to their doctors, and they have a conversation, they can hopefully trigger their GP or their neurosurgeon or their neurologist to show them the brain, where inside specifically, the impact has been.
Bill Gasiamis 12:40
And as a result of that, what gets affected so that they have a visual of that. And then they have more understanding. And hopefully what that does is reduce the frustration and the challenge that I remember facing, which was.
Bill Gasiamis 12:58
I know that this thing has happened in my head, but I don’t know why I’m experiencing the things that I’m experiencing, are they another stroke? Or are they because of the thing that happened there and therefore I’m currently missing this function, or I am currently have this function being impacted.
Bill Gasiamis 13:16
So that’s the beautiful thing that you’ve done there. And recently, unfortunately, a friend of mine has contacted me in Melbourne here to tell me that one of their friends was in a car accident, he was hit by a car, this particular gentleman, and he was announced brain dead and clinically dead pretty much a few hours later, and they needed the family’s permission to switch off the life support.
Bill Gasiamis 13:46
And of course, the family initially said no, we don’t want to do that. And the only way that they were able to get them over the line to convince them that unfortunately, he’s not in a state that’s going to be survivable was to ask the neurologists, to see a scan of a healthy brain and a scan of his brain.
Bill Gasiamis 14:11
And their visual, unfortunate as it was, was able to paint the picture as to the seriousness of the situation or where the damage was. And I think having that third layer of understanding, okay, you’ve been told, you’re experiencing it, and then you see it.
Bill Gasiamis 14:31
Having that third layer of information, I think, makes for a far better understanding of what’s going on in your own brain and then I think allows for better questions to be asked and for you to approach the whole situation in a different light, at least that’s how I see it. Sounds like you got a similar benefit.
Snit Fitzpatrick 14:59
Oh, Well, I mean, first of all, this friend of mine, Mark is also a drummer, he’s a customer of mine where I work. So we were friends for a long time. So it was like, gee, how convenient. He’s a wonderful guy. And sure the fact that the whole thing Bill, the whole incident from beginning to hopefully end, which it did for him to be able to come over exactly he showed me what you were just talking about.
Snit Fitzpatrick 15:28
And he was able to go through the whole process of what had happened. And give me that much more information. That’s like, obviously, what you’re trying to do. And I will say one more thing about that is, recently, a friend of mine had suffered a stroke.
Snit Fitzpatrick 15:50
And matter of fact, he was in the same stroke ward that I was. Now he’s okay. But he’s not doing as good as I am. And but he’s not incapacitated. He’s not shut down. So I’m not really sure what happened to him. I’m gonna try to hook him up with my friend so we’ll see. But so yeah, so you asked me, when did I start playing again, it was literally that next week, I was back to work. And it was like nothing ever happened.
Bill Gasiamis 16:21
Was it too early? In hindsight, do you think you should have given yourself a bit of a break?
Snit Fitzpatrick 16:26
I don’t think so. I mean I think I took a couple extra days off if I remember correctly, I had to pulled out my journal from that, which I had a record and as I recall, it was pretty much how I’m telling you now it wasn’t any more like, Oh, my God, it was like, I had a stroke, this happened, I’m okay. And thank God for miracles and luck and friendship.
Bill Gasiamis 16:54
And modenr medicine.
Snit Fitzpatrick 16:56
Yeah. And modern medicine for sure. So, the only time I ever came back too soon from something I had throat surgery, 2016. And I tried to sing sooner than I should have. So that was a mistake. And like I said, in hindsight, that everything had happened, the whole process and the issues that had happened now, I didn’t feel like I was pushing myself, I mean, I was fine.
Bill Gasiamis 17:28
Music doesn’t seem like it’s your job, though. It seems like it’s something that is just your life part of your life. It sounds like it’s in your blood. And you can’t do without it either way. So it doesn’t sound like it’s like something you have to motivate yourself to go and do. It’s like, what you do?
Snit Fitzpatrick 17:49
Well, yes or no certainly is my passion for life. But as I get older, you know sometimes, some nights are harder than others to go, alright come on, you know, but what I find interesting is I’ve never gotten home from a gig good, better or ugly, where I felt like, I wish I wouldn’t have done that.
Snit Fitzpatrick 18:11
Or even if it was bad, I felt I always feel like okay, I accomplished something. I played my songs. I did what I was doing, or I played my drums with somebody else, or whatever I did. Yeah. I mean, it’s what I’ve done since I was a teenage boy.
Snit Fitzpatrick 18:24
And that’s another thing. I mean, I kind of wound up in Houston. Not by accident, but I followed a lady down here that I knew and my dad was here to time. So a lot of things turned around for me, musically, when I got here in 94. That probably wouldn’t have happened for me. If I had stayed in Atlanta. That’s just the way it turned out.
Bill Gasiamis 18:47
Yeah, right. So your bad days at a gig are what? As a guest, who’s watching the show, do I pick up that you’ve had a bad day on the instruments or anything like that? You’re the only one that knows.
The Follow-Up – Snit Fitzpatrick

Snit Fitzpatrick 19:08
No, I that’s part of being a pro. You know, you got to suck it up. And, you know, like I said, there’s days I mean, I was like I said it really struck a nerve when I was reading your story about how you said pushing yourself too hard could be a factor because I know that had to be a factor. But there’s something else that before I forget, I want to tell you the follow up.
Snit Fitzpatrick 19:35
So when when I they followed me up with a neurologist, and the day that I want to see this neurologist I’m 5 6″, about 155 I’m not overweight. And I went to see the neurologist and I didn’t sleep well. And I was cranky and went to see her and she was you know from probably from India or Pakistan or something.
Snit Fitzpatrick 20:02
So the conversation was strained at best. But she said something about sleep apnea. And I thought, there’s no way in the world that a guy my size has sleep apnea. Here’s where it gets interesting. I’m glad I wanted to make sure I remember to tell you this part of the story. So guess what they did? They sent me for a sleep study have you ever had one of those?
Bill Gasiamis 20:28
No, my wife has.
Snit Fitzpatrick 20:30
Okay, well, there you go. I mean, they had all these note things and then they say, go to sleep. Now I’m pretty much a night owl. So this is like, I don’t think I fell asleep till about four o’clock in the morning. So at six o’clock in the morning, they wake me up, get up, I’m like what? And they said, we’ll show that there were some sleep apnea incidents during your sleep.
Snit Fitzpatrick 21:01
And I thought, well, great. So then I go back, and I talked to the doctor, and she says, we recommend that you get a CPAP machine. So I went back. And the second time I went back, they gave me the CPAP machine, and it was the one like, there’s an octopus on your face.
Snit Fitzpatrick 21:20
And the machine is making a lot of noise. And I’m like, and you want me to go to sleep with this thing? So after a couple hours, I said, you know what, forget it. I can’t really if I left or whatever, it was horrible. So I came home and I called the neurologist, so we’re going to send you to another place that specializes in different kinds of equipment.
Snit Fitzpatrick 21:48
And sure enough, they gave me the I thought I had a here hold on. This is the one I’ve been using for almost four years. It’s the one it’s just a pillow sits in your nose. So I’ve been using a CPAP machine since August of 2018. And I use it every night. So they’re saying, you know, like I said, that could be a reason.
Snit Fitzpatrick 22:17
Like I said, when I went back to the neurologist this past April. I said, Do I really have to keep using this thing? And she said open your mouth? And she goes, Okay, exactly. She said, What I have is a very thin windpipe. So it was, but it’s interesting that it took that far in my life for me to realize that there was an issue with sleep apnea.
Bill Gasiamis 22:46
Do you feel like you’re sleeping better with the sleep pillow thing at the bottom of your nose?
Snit Fitzpatrick 22:51
I used it for so long that I don’t really experiment. And there’s been a couple of times where I didn’t have it. I think I went out of town and I forgot it. And I don’t recall really remember at this point if it has helped. But you know, I wasn’t about to say no if that’s what they thought the problem was.
Snit Fitzpatrick 23:14
Now what I thought the problem was. I’m laughing because it’s funny wasn’t funny when it happened. I had a jealous ex-boyfriend punch me right here. Boom! And this is 20 years ago. So one of the things I talked to the doctors about when I’m asleep on this side, because I sleep on my side. When I sleep on this side, I was okay.
Snit Fitzpatrick 23:45
When I sleep the other way around sleep on this side. I wasn’t okay, because this is the side that I thought was blocked. Now, I’m scheduled to see her again next month because I have the app on my phone, that every morning is the first thing I check that tells me you know the AHI and the times has come off it has.
Snit Fitzpatrick 24:09
But for the most part does it help? I think I will have to say that it does. I mean like I said I don’t want to experiment and say I’m not going to use it for a week or a few days. Because to me I wear a bite guard because I grind my teeth I put that in and put that thing and I go to sleep.
Snit Fitzpatrick 24:31
You know very seldom when I first got it oh yeah, the first month was horrible. Most of the nights it was screw this and I take it off and throw it on the ground. So it does even with the pillow setting. Because the first time like I said the first time with the fighter pilot mask and the machine made horrible noises it was it was not good.
Snit Fitzpatrick 24:52
The machine I have now it kind of ramps up the amount of pressure at blow so you can set it where it doesn’t blow real hard and I’ve gotten used to it. So I’ll continue to use it till they tell me I don’t have to.
Bill Gasiamis 25:04
Yeah. So what it does is just pumps air into your airway right?
Snit Fitzpatrick 25:09
Right. So it’s supposed to help your breathing. And like I said, when you know what, interestingly enough, I’ve had a primary care physician since 1996. Now, when I went to see him after I got out of hospital when I was ok, and the first thing he said to me is what happened?
Snit Fitzpatrick 25:34
And I was like, you’re supposed to tell me that you’re my doctor. You know, so I told him what was going on and when I’ve mentioned this CPAP thing he just says, well, if the neurologist keep telling you to use it, then keep using it.
Bill Gasiamis 25:48
Yeah. Was this your first major scare, healthwise, in your 64 years?
Snit Fitzpatrick 25:56
One other time when I was 45, I had eaten something at a truck stop that was tainted with bacteria, and within a few days, I had a raging fever, not knowing that’s what it came from. So my doctor put me in the hospital. And they said that I was severely dehydrated and they told me at hospital they said that I had hepatitis B in my liver, which that was wrong.
Snit Fitzpatrick 26:31
That was not what happened. But I remember that I had a road band. This is one of the stupidest things I’ve ever done in my life. And it was a four day trip with a long drive. It was like the first one was from here to Oklahoma City, which is about eight hours. And then from Oklahoma City to Denver, no Santa Fe, New Mexico, these are long drives, four or five 600 mile drives.
Snit Fitzpatrick 27:01
When we got to the first stop, in Oklahoma City. I dried up there was I was laying in the back of the van thinking I was gonna die. I really did. And the other guys in the band were like nah, shut up, you’ll be ok blah blah. You need help driving. It’s the kind of guys they were that’s why I don’t talk to him anymore.
Snit Fitzpatrick 27:23
But, the gentleman that was in the headlining act was also our manager. And he was aware of what happened, what’s going on. And he said, We’re gonna get you your own room and get some rest so you could feel better. So I remember walking into the room that night, and everything was gray. Because my liver was whatever the bacteria had gotten into my liver.
Snit Fitzpatrick 27:48
And even the doctors told me, Don’t you don’t need to go on this trip. But I did it anyway. And by whoever’s looking out for me, the next day, we drove from Oklahoma City to Santa Fe, New Mexico. And by the time we got there, I was fine. Those were the two in my lifetime, the two incidents or health issues that I would say, I can’t recall anything else other than, some gum surgeries or whatever, but nothing that was brought on by something going on in my body.
A Life-Changing Situation

Bill Gasiamis 28:31
Okay. So it’s interesting, though, has this been impactful? Has it made you change the way you do things, think about life or that kind of stuff. Because you came across me and I came across you on my Instagram page, where I put the call out for people to come onto the podcast that have had a stroke and want to talk about it.
Bill Gasiamis 28:50
So I imagine you were following me for some time or if you weren’t, you were following some hashtags that are related to stroke. So it’s done enough to get you into the zone of kind of connecting with other people and being aware of some communities about stroke. So what has it done? Has it changed your mindset and the way you go about things?
Snit Fitzpatrick 29:14
Well, that you know, you kind of asked me two questions at once at the beginning of that. Has it changed the way I live my life? Probably somewhat Yeah, sure. Because I was blowing and going, you know, before like, just way too much. I mean, it was it was a wake up call, you know, as far as I mean, when I came across your Instagram and it was like wow, this is great because you could get on the, on the internet or whatever.
Snit Fitzpatrick 29:43
And I haven’t really looked into like support groups or anything like that because in my mind, I was okay. But also one of the main reasons I wanted to be here today with you is to help other people and to let them know because I’ve had this, first I told you about my doctor, neurologists budy.
Intro 30:04
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 30:29
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 30:48
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Snit Fitzpatrick 31:07
We have another drummer friend. And unfortunately, he did the “I’m gonna lay down and take a nap” routine. And he called Mark like three days later, and it was way too late. So obviously, I know it’s preaching to the choir for people to go, you have to act fast.
Snit Fitzpatrick 31:27
But if you go into the hospital and it wasn’t a stroke, they’re not going to berate you for coming in here. They’re going to say, well, luckily, you’re okay. But it was good that you came in. And I was at the dentist today and my dentist was talking about I guess it’s a male thing wher “No, I’m okay I don’t, I don’t need to do anything”.
Snit Fitzpatrick 31:52
I wouldn’t call myself a hypochondriac. But there’s there’s a few other things that have happened in my life that I think have stayed with me. First of all, my aunt on my dad’s side, my dad’s sister, when she was about 42. And I think I was about 10 or 12 years old, she had a stroke, and she was in a wheelchair.
Snit Fitzpatrick 32:12
And it was very much a memory of my childhood. Also, not to sound morbid when my mother passed away when I was seven, she had brain tumors. And I remember as a little boy with her dizzy spells and freaking out now, of course, that was the number one question that I had for doctors, my friend Mark was this hereditary? Could that what caused it?
Snit Fitzpatrick 32:40
And my friend Mark, the neurosurgeon said no, it was not a factor and it wouldn’t be a factor. Those two helped me know that when I had the stroke that I needed to act quickly. I needed to know I needed to call 911 I need to get to the hospital. And it wasn’t one of those like, you know, I have a slight headache or there’s a pain in my arm, it was a major incident going on, where I knew I had to do something quickly.
Bill Gasiamis 33:13
So in the last four years, has this become common knowledge in your circles? Does the because you will back at work so quickly and back in the band so quickly? Does do the fans to the people that listen to your music know that this happened to you? Did they become aware of that?
Snit Fitzpatrick 33:31
The time, sure. Now, like I posted something tonight about being on your podcast, because I want my friends to see it when it’s aired. And my close friends were my girlfriends, certainly. But you know, when you’re in playing with a bunch of people around, there’s people that are your friends that of course know and there’s people that are just basically I don’t share that with everybody. But I mean at the time, sure, at the time, anybody that was around me or saw my band or work with me or whatever. It was a story that I told often.
Snit Fitzpatrick 34:10
But it’s great. It’s very therapeutic. And great for me to talk to you about it now. Because having gone through what you’re going through that stuff that I hadn’t done, other than this friend of mine recently that what’s happened to him, but I certainly hadn’t talked to somebody who’s put as much into it as you have.
Bill Gasiamis 34:34
Yeah, fair enough. I appreciate that. So you’re going about life a little differently. Today you’re reflecting on what it is that you’ve been through and you’re changing a few things and you’re doing things a little bit differently. Tell me a little bit about The Snit Show? Did I say it right?
Snit Fitzpatrick 34:55
Yeah there’s no snitch.
The Snit Show – Snit Fitzpatrick

Bill Gasiamis 34:58
The Snit Show and how did you end up with the name Snit?
Snit Fitzpatrick 35:02
Okay, I’ll be happy to tell you that I’ll keep it short. When I grew up as a kid, when my mom passed away I was living in northern Minnesota, and I got sent to live with my dad. God rest his soul, and it’s a series of horrible stepmothers.
Snit Fitzpatrick 35:19
Luckily, they’ve not made me women hater, I love women. But when I finally got to the point where I was on my own, I lived in a little house out in the woods, in a town called Rancocas woods, which is near Philadelphia, between Philly and New York.
Snit Fitzpatrick 35:34
So we could make as much noise as we wanted, and nobody could hear us. Now the only thing that was close to where I lived was a liquor store called Martin’s Liquors . Now, what we did back then was, we would read everything backwards.
Snit Fitzpatrick 35:52
So the town I lived in sounds ridiculous, but where it came from, was called Rancocas Woods backwards that Sacocnar Sdoow Martin’s Liquors backwards is Srouqil Snitram. So shorter the story here, they started calling my house Snitram’s Palace, we’re gonna go to Snitram’s.
Snit Fitzpatrick 36:14
And then they started calling me Snitram, and they shortened it to Snit. That’s where it came from. That was 1975. So that nickname kind of stuck around. And ironically enough, I’m a huge Atlanta Braves fan. That’s my team. They won a World Series last year, and their manager’s name is Brian Snitker. And he goes by Snit.
Snit Fitzpatrick 36:39
Now it was just a coincidence. It doesn’t have anything to do with that. And nobody knows that. But here’s where the meaning of the word Snit or whatever it slang or whatever. In the south, where I live. “Don’t get yourself in a Snit” is an expression, meaning don’t get your panties in a wad.
Snit Fitzpatrick 37:02
So I’ve had to live with that, too. So when I started my band, in 2000, I was on the road with this other band called The Hollisters. And we had a really good run. It was kind of alternative country, honkytonk, Texas, blah, blah, blah, which I’d never played before, but it was fun.
Snit Fitzpatrick 37:20
So I decided I wanted to start my own band. And I was hanging out with some people one night and said what have you been doing? And I said, I’ve been dragging this dog and pony show around the country, meaning The Hollister my old band. I thought that’s a good name for a band. So there you go. I came up with the name Snit’s Dog And Pony Show and 22 years later, still going.
Bill Gasiamis 37:44
Still going? And that’s awesome. So would there be people who don’t actually know your real name, and they only know you by the word Snit?
Snit Fitzpatrick 37:53
Oh, yeah lots of them.
Bill Gasiamis 37:55
I remember playing football club. Soccer, I remember playing in a soccer team. And the majority of the guys I actually did not know their real names. I knew them only by their nickname. And it’s because I came into the club late and I was introduced to them by their nickname.
Bill Gasiamis 38:30
So two or three years down the track, I’m learning their real names, because somebody will refer to them by their real name. They’ll say, you know, Peter, and I’m like Peter, who? We don’t have a painter at the club. That’s like, yeah, we do that guy. And they’ll give me the nickname.
Bill Gasiamis 38:45
And then it’s like, ah, that guy’s name is actually Peter. So I find it really interesting how nicknames evolve. And then how the group changes it and makes it something so that it’s easy for them to say and pronounce. And you just have to go along with it. You can’t do anything about it. You can’t change it. You can’t make them stop saying that. It just sticks.
Snit Fitzpatrick 39:11
Well, it’s funny too, because like somebody will call the store where I work. And they’ll ask to speak to Kevin, and a couple of guys that work there that were new, somebody’s looking for Kevin I said, Oh, that’s me. That’s my real name. So yeah. As far as on the gigs, and as far as the world, whatever it is what it is, and you know, I’m destined to be Snit. So there you go.
Bill Gasiamis 39:39
Yeah, fair enough. It’s not a bad thing. So living at home when you got back from hospital, did anything have to change at home to kind of help you settle back in or was any of that stuff happening? Or was it all kind of just back to the usual routine?
Snit Fitzpatrick 40:00
And as far as I can recall Bill, it was back to the usual routine, other than the changes I had to make, you know, in a few months to get used to the CPAP machine. And I don’t recall really changing anything. I mean, I’d have to look back and read through the process of what happened.
Snit Fitzpatrick 40:21
But as I recall, no, it wasn’t. Because I was so lucky. That everything, I mean, obviously my case, is the ultimate result of what you’d like to happen to somebody that had happened to me, obviously. It was funny, because the day they got me up to do, they wanted me to walk toe to toe and do all these things, and had four hour sleep.
Snit Fitzpatrick 40:50
And I said, I didn’t get any sleep. That’s nothing to do with why I can’t do this. I mean, what happened to me? The fact that I can’t really do what you’re asking me to do is because I’m tired, but as far as anything else goes, No, it was just, like I said, a medical miracle, for sure.
Bill Gasiamis 41:10
Yeah. That’s why I’m probing because the more than 200 people that have already been on this podcast, nobody has had that version of a stroke before nobody has reported your version of it. And it’s hard to contemplate. It’s hard to get my head around it.
Bill Gasiamis 41:28
And it’s great that I can’t get my head around it. Because I’m glad that that’s what happened. It’s just so interesting and bizarre, but awesome, and amazing and fantastic and blessed. You know that’s the way it went. Good on you, well done.
Snit Fitzpatrick 41:44
Well, I mean, that hits home really hard now to hear that you’ve never had anybody else that’s been as lucky as me.
Bill Gasiamis 41:55
I know, they’re out there. But I haven’t had them on the podcast. And I normally get people who have been impacted in some way shape, or form and are still living with the impact of it many years later, or a few years later.
Bill Gasiamis 42:08
And, they’re living a new version of themselves and a new way of life. Or they’ve adjusted a lot of things or, you know, they can’t do things they used to do, I’ve met some musicians who haven’t been able to go back and play their instrument anymore. So it’s like, wow, this is such a great outcome. This is such an amazing thing. It’s great to hear it really is.
Snit Fitzpatrick 42:29
Well, it’s great. I feel course, like I said, I have friends, a friend of mine, who is a very well-known jazz drummer in Houston, that unfortunately, I mean, he’s fighting the good fight. But, you know, he waited too long. He waited too long.
Snit Fitzpatrick 42:47
And I realized that, you know, all the things I had to have happened, after the whole thing was done, when I realized what had happened and realized that the TPA has a one in three shot that works. I had to get there quickly, that works.
Snit Fitzpatrick 43:04
And, everything that needed to happen for me to carry on my life, like nothing happened. happen. So I mean, yeah, that’s why it’s so important that was the main reason I told the story before, but that was the main reason why I wanted to talk to you other than, you know, sharing my stories to let people know that if something happens, and anything you feel like this is, like you said something I’ve read about you said something like numbness in your toes are.
Snit Fitzpatrick 43:37
I got a pinched nerve in my back. So my right toes are numb constantly. But it was either deal with that, which is just nothing or have somebody slice by backup, and I didn’t want to do that. But any kind of numbness or any kind of loss you’ve got to move quick.
Snit Fitzpatrick 43:57
There’s a refrigerator magnet says FAST, you know, it’s like, I know one of the words afterwards, basically, the message is, act quickly the fact that I was so close on that particular night, like I said if it happened two days earlier, when I was 60 miles away from here, loading my gear, you know, huffing and puffing or whatever driving home or something.
Bill Gasiamis 44:28
Different situation.
Fear Of Driving Long Distances After TIA
Snit Fitzpatrick 44:30
So that part brings me to something else. The one thing I’m a little bit I wouldn’t say paranoid or scared. I was I don’t like to take long trips by myself in a car. I just went to Atlanta three weeks ago to visit friends. It’s a two-hour flight, but I am a little bit queasy about like, you know, so we got a gig that’s 80 miles from here about driving there by myself. So that part of what happened is probably the biggest thing that sticks with me as far as being concerned about stuff to happen again.
Bill Gasiamis 45:13
And you most likely been given the “all clear” to drive and do all that stuff anyway, and you look very capable of doing that. But I know what you’re saying. It’s kind of a thing that you’re thinking about. And you’re thinking about what might happen if something happens and when you’re driving and you’re doing a rapid speed, it could be a serious thing.
Snit Fitzpatrick 45:32
And there’s something else I’m gonna remember this in 2019. About a year after I started using the CPAP, around summertime, I was having moments where I felt like something wasn’t right. And I get to work now I’m okay, I’m okay.
Snit Fitzpatrick 45:53
And one day I came home from lunch, I live very close to where I work, and I didn’t feel okay. And I took an Uber to a urgent care center not close, not far from here. They checked me in they ran a bunch of tests, they said, we need to take you to the hospital.
Snit Fitzpatrick 46:12
And I was like, Okay, here we go again, but I wasn’t having any stroke symptoms. I was just lightheaded and spacey, and something wasn’t right. So they checked me into the hospital. And I was there for two or three days. Bill, they ran tests on everything. Every blood test imagine every cat scans this, that the other and they said, there’s nothing wrong with you.
Snit Fitzpatrick 46:40
So the cardiologist told me to come see him. I went to see my regular doctor who said no, I think it’s called I can’t remember what exactly it’s a heart specialist. I mean, cardio physiologist maybe I think it’s something like that.
Wrong Medication
Snit Fitzpatrick 47:00
When I went to see him. Obviously, after the stroke, I was put on another blood pressure medication. So I told you earlier in the story that I hadn’t been taken when I had the stroke. Obviously, that was probably a mistake. Well, when I went to see this cardio physiologist, I hope I’m saying it right, somebody will correct me, I’m sure.
Snit Fitzpatrick 47:25
He said lay down. And he took my blood pressure. He said in a sit up. It’s about blood pressure. Again, he said now stand up. And he took my blood pressure again. And he said, your blood pressure just dropped 30 points when I put you through that.
Snit Fitzpatrick 47:42
And he asked me what I was taking. And I can’t for the life of me remember what it was. I know what I’m taking now. But he said, Oh, that’s your problem. We’re taking the wrong blood pressure medication. So all that, something’s wrong with me. Oh, shit, you know, blah, blah. That put me in the hospital. All that was because I was taking the wrong blood pressure medication.
Bill Gasiamis 48:03
Wow. So that’s really important. Actually, that’s a really important message, if you’re noticing symptoms, could be related to medications that don’t agree with you.
Snit Fitzpatrick 48:12
Absolutely. So obviously, they switched my meds and you know, there you go. But that was a little over a year after the stroke. So, you know, somewhere in my subconscious was telling me something’s not right here.
Bill Gasiamis 48:25
Sounds like you’re really in-tune. In tune to that internal voice or something. I ignored my subconscious, my conscious my everything, I completely ignored everything with the numbness that I experienced. And the numbness that I experienced was new, I had never had it before I was 37 years old. And I had work to do, I was too busy to pay attention to it. So it sounds like you’re actually very well in-tune with, with what it is that you’re noticing in your body. You’re paying attention.
Snit Fitzpatrick 49:00
Well, yeah, it was just certainly that, having a stroke and knowing what that was about and knowing that, there was times where I hadn’t felt well, but there’s a difference between not feeling well and like I said, when I had the stroke, my first thought I remember was like it just happened. I was like, What the hell’s going on here? You know, this isn’t right. This is not like, my arm hurts. This is like, whoa, something major is going on with my body right now. So I was lucky that I didn’t act like I’m sure a lot of people did andt do nothing.
Bill Gasiamis 49:37
Yeah, I know that a lot of stroke survivors often over well, I did it I did it for sure. I kind of I was over anxious. So every time I noticed the headache bit, you know, between stroke one and brain surgery. I was at the hospital all the time. And and I was saying look, you gets probably I was going there and kind of apologizing at the beginning thing. Look, it’s probably nothing but you know, I’ve had these things happen to me and I’m feeling weird, and you need to check it out.
Snit Fitzpatrick 50:10
I’m sure that any professional medical person was fine with you coming in and checking you out again. That’s the message. Feel like well, I don’t want to bother him BS it’s your life. It’s the only one you got.
Bill Gasiamis 50:25
Yeah, they were always lovely. And always tried to make me feel better about going in and checking in and a couple of hours later or say the next day, they would send me home and say, Look, everything’s okay. You know, just keep coming back in if you need to. And that makes you feel relieved about about the fact that, you know, they want you there. That’s what they do. They’re supposed to prevent stuff. And prevention is better than cure, you know if they can.
Snit Fitzpatrick 50:51
One more thing, I’m glad I didn’t forget this. When I was 21, I was getting ready. I was with a band in New Jersey, we’re getting ready to move to Atlanta, we’re going to be southern rockers, and here we go. Right before that happened, I started having anxiety attacks, panic attacks.
Snit Fitzpatrick 51:10
And man looking back at it, it was scary. real scary, because my first thought once again, was going back to my mother with the and so a couple of times they took me to the emergency room. And by the time I got there they were about this a long time ago bill but I remember them saying there’s nothing wrong with you got the flu.
Snit Fitzpatrick 51:36
There’s nothing wrong here. So luckily, that was an hour thing because I had a similar situation years later with hypoglycemia, which is low blood sugar, which is something which caused the same kind of effect, Whoa, you’re dizzy. Now, this was about 25 years ago. And I went to the doctor and they did where they take your blood. And they said, Well, yeah, you have low blood sugar.
Snit Fitzpatrick 52:02
So easily fix just eat, you know, eat something. So now I know if I haven’t eaten. And I started to feel like that. That’s the cause of it. So I’m glad I remembered those things, because those were before the stroke. But they were also things that happened to me that needed to be addressed. And were similar. As far as how I felt like something like this happening. That’s not right.
Bill Gasiamis 52:32
Similarly, you know, I’ve had a few people on the podcast tell me about when they’ve had their stroke. And say, the day before that, or a week earlier, somebody said to them, man, I’ve got a massive migraine, you know, and that person is a migraine sufferer.
Bill Gasiamis 52:49
And they automatically did a scan in their own mind, then they went back and they tried to work out what was happening to them. That massive headache that they had the worst headache in the world they’ve ever had. And they went back to their friend and said, I and my friend had a migraine, it’s probably a migraine.
Bill Gasiamis 53:08
And they then reported safe, for example, to the doctor with that type of information. And then they kind of took the potential time to diagnose what was happening and make it last longer. And then, of course impacted more dramatically with a stroke, you know, so that’s kind of what what I was doing as well, in my mind, I was going I’ve got a numb toe.
Bill Gasiamis 53:33
Well, that means there’s something wrong with my back. And because I had a relationship with my chiropractor, because I had a property maintenance business where I would be lifting heavy things all day, putting my back out or twinging muscles or whatever. I outsource the responsibility to have good physical health to my chiropractor, base to go to him and say, look, you sort it out, get me back on my feet again.
Bill Gasiamis 53:56
And that’s what happened with the numbness. I went to my chiropractor and I said to him, I’ve got a numb toe or numb leg by the time I got there. I’ve done some time back, you know, check it out. He checked it out and said there’s no numbness there. And then it took him and then it took me a few more days to go back to him again and say look, the numbness has now spread to my entire left side.
Bill Gasiamis 54:16
And then when I got there, he said to me, you need to go to the hospital. This is not a chiropractic issue. And what I was doing when I went to him the first time was I was downplaying the seriousness of the situation or how bad it was affecting me. Because I didn’t want to end up in hospital. I didn’t want to be away from work. I didn’t want to be out of action. And it’s just so ridiculous.
Snit Fitzpatrick 54:40
I got stuff to do.
Bill Gasiamis 54:45
And that’s that’s the whole reason behind it. And even when he said to me, you have to go to the hospital that Friday, and I couldn’t feel my entire left side. I argued with him even then I said, Am I gonna go to work tomorrow I told my wife the same thing. And I wouldn’t and I wouldn’t comply anyway, eventually went to the hospital. And then I found that it was a strike. And then I felt like a bit of an idiot. But how could you have ever predicted that a numb toe is a bleed in the brain?
Snit Fitzpatrick 55:11
I’ve never heard that before. There you go. This friend of mine I was telling you about, you know, he was on the floor with food. So he thought was food poisoning for two days before he finally got to the hospital and they said no you have a stroke.
Snit Fitzpatrick 55:26
So that part of it too is, what I found out obviously, what’s happened to you I’ve never heard I’ve heard “yeah had a mini-stroke or transient ischemic attack or a major hemorrhage”. I didn’t I didn’t realize there was more situations or more things that could happen to
Bill Gasiamis 55:56
That cause a stroke.
Snit Fitzpatrick 55:58
Yeah, that cause it and the results of what afterwards? What’s going to happen to you. So I didn’t realize that.
Bill Gasiamis 56:05
Yeah. And the thing about some people that have a TIA is they don’t take it seriously, it sounds like you definitely have, but some people they’ll be back at work a couple of days later. And they didn’t take it seriously, they don’t pay attention to what the doctors are saying. And then they have another stroke down the track. And that’s because the TIA is a warning sign and saying, Hey, there’s something wrong. You need to pay attention and do something about it.
Snit Fitzpatrick 56:32
When I got to the hospital, they were like, they said you had a stroke. They didn’t say, Well, you might have had a stroke. They said you had a stroke. And it was like, okay, yeah, I guess I did. And, the follow up. And once again hitting home I can can’t say enough, it’s, acting quickly. That’s the most important thing. I mean, it’s not 100%. But it’s certainly not going to get any better on its own.
Bill Gasiamis 57:05
100% Yeah, very much so. So tell me about the next gig that you’ve got coming up with the next gig? And, and just be aware that this interview will probably be out in about three weeks from now, because we’ve got a few in the pipeline now that everyone responded and said they wanted to be on the podcast, which is great.
Snit Fitzpatrick 57:27
Friends of mine were like, When can I see it? And I said, well I’m sure you’ll send it to me and I can share when COVID hit, we were very lucky, there was three or four places that we played out, they were outside, or, you know, covered up mostly outside, where we were away from people.
Snit Fitzpatrick 57:51
And we were able to continue to work and do what we do. So now, I mean, at this point in my life, travel is not as much as it used to be by any means unless I get a chance to go to Europe. And that hasn’t happened in a long time.
Snit Fitzpatrick 58:06
But, you know, tomorrow night, I’m doing a little thing in Houston, a place that we play it normally with just playing acoustic and electric guitar and bass. And I play drums with a guy and we play every Monday night, a little place just outside just on the west side of town.
Snit Fitzpatrick 58:27
So I’m doing enough to keep my chops up drum, singing, and guitar, and I know how I am to save my day off. And usually, the first thing I do is get my books out and try to book more gigs and, you know, stay busy and stay in the game, you know, when it’s like, I don’t know how much more I get to stay in the game because it’s like, at 68 there’s always somebody coming up behind you.
Snit Fitzpatrick 59:00
And as long as I can do what I do and make a few bucks, have some fun, I keep doing it. And the website is snitshow.com and all the posts on there as far as the links and everything as far as what I do.
Bill Gasiamis 59:16
Yeah, we’ll definitely send everybody if they want to catch up with you or find out how to follow you or do any of that stuff. They can go to recoveryafterstroke.com/episodes and they’ll be able to see the episode with your name in it.
Bill Gasiamis 59:34
And it’ll be Kevin (Snit) , and then we’ll finish it off with your the rest of your name and we’ll be able to get people to see that. I really appreciate you coming on the show. Reaching out and sharing your story. And I especially love the fact that you want to do it to raise awareness for others. People. That’s brilliant. That’s exactly what the show is about. And I wish you well, man, and I hope you keep playing to your 100.
Snit Fitzpatrick 1:00:07
Yeah, and I’m really happy, thanks for having me first of all, and if I can help somebody out there in the world, it’s like when I help kids quit smoking, there’s a kid that I work with, at ike 22, and it finally got her to quit. I said, Sunday, when I’m dead and gone, you’re gonna remember me, I was the one that help you quit smoking?
Snit Fitzpatrick 1:00:28
You know, because it’s hard. It took me a long time to do, like I said, I’m really glad I came across your Instagram, and it’s immediately got my attention. And the fact that the first time I had a chance to really share my story with somebody that is so aware of it, and just doing so much to help people in our position.
Bill Gasiamis 1:00:31
I’ll tell you why I got overwhelmed with the response, I put it out there, just off the cuff, just not thinking too much about how many people would respond. And I think I got 30 or so responses. There’s 52 weeks in the year, I release one episode a year, I mean, that’s the majority of one of my years, you know, filled with podcast episodes, if I continue to release one a week.
Bill Gasiamis 1:01:25
So I’m gonna have to start releasing a couple more a week. Because I don’t want it to be such a long delay between recording and then releasing that’s too much of a delay. But I was so overwhelmed. And it’s amazing that there is so many stroke survivors that want to do exactly what you want to do. They want to share their story, and they want to help other people. And I just love that about our community. I think it’s amazing.
Snit Fitzpatrick 1:01:47
Right? Well, it’s great. It’s great that it’s something positive for our social media site really positive, what you’re doing other than just frivolous, nonsense, which a lot of it is.
Bill Gasiamis 1:02:01
Thanks so much. I really appreciate it.
Bill Gasiamis 1:02:03
Well, thanks again for joining us on today’s episode. If you would like to learn more about my guests, including links to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, and I would really appreciate it, the best way to do it is to leave a five-star review, and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 1:02:29
And if you’re watching on YouTube, leave a comment below the video, give it a thumbs up, subscribe to receive notifications of new episodes so you can get them as they come out. Now, sharing this show with family and friends on social media, we’ll make it possible for people who may be in need of this type of contact to find it easier.
Bill Gasiamis 1:02:29
And that may make a massive difference to somebody that is on the road to recovery after their own stroke experience. So thanks again for being here. Thanks for supporting me and doing all the things that you do to make this show what it is I really appreciate you for listening I really appreciate the listeners and I really appreciate the the guests for coming on. See you on the next episode.
Intro 1:02:53
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:03:38
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:03:50
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.
Intro 1:04:06
Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or is 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.
Intro 1:04:22
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Intro 1:04:45
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The post Transient Ischemic Attack (TIA) Recovery – Kevin Snit Fitzpatrick appeared first on Recovery After Stroke.
1 hr 6 min
August 08, 2022 Life After Brain Hemorrhage – Rodrigo Sanmar
Rodrigo Sanmar was living an unsustainable life as a film creator in Mexico when too much work and not enough downtime led to a brain hemorrhage that change his life for the better.
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Highlights:
01:48 Introduction
03:33 Hemorrhagic Stroke
13:55 Thanks To The Stroke
19:22 Sooner Rather Than Later
27:45 The Power Of Choice
34:37 Switching Mindsets
53:22 Life After Brain Hemorrhage
59:07 Finding Solutions
Transcription:
Rodrigo Sanmar 0:00
There is this amazing, I love it, this North American saying that people in the US they say this phrase that I love is, “The angrier I am, the more a**holes I meet. I mean, if you concentrate in this bad mood and of course, bad things will happen to you all day long. I mean, what you were just saying, I you can’t achieve something because it’s too big, you only have to get a team and the resources you have to put together to create it.
Rodrigo Sanmar 0:33
But the important thing is, will you allow yourself to take the first step on the direction that you want to go? Because that’s where everything starts, or you keep in the fear that you won’t be able to achieve it, because everything will go wrong and you don’t start anything, never.
Intro 0:57
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:10
Hello, and welcome to episode 207 of the recovery after stroke podcast. If you are a stroke survivor with a story to share about your experience with stroke, and you have been thinking about reaching out to be a guest on the show. But we’re waiting for the right time to reach out? This is it guys.
Bill Gasiamis 1:27
If you go to recoveryafterstroke.com/contact, you’ll find the form that you can fill out to apply to be a guest on the show. There isn’t much to do with regards to the application. Basically you have to be a stroke survivor, or care for somebody who’s a stroke survivor, or be somebody that helps other stroke survivors.
Introduction – Rodrigo Sanmar

Bill Gasiamis 1:47
So not much to do to qualify. As soon as I received the request, I will respond with more details on how you can choose a time that works for you. So that we can meet over zoom at a time that’s convenient for both of us. My guest today is Rodrigo Sanmar, a film creator and hemorrhagic stroke survivor at the age of 28.
Bill Gasiamis 1:47
Rodrigo is my first guest living in Mexico. And I’m so excited that the podcast has been able to reach so many different countries around the world. And so far we have been listened to in 68 countries. It is absolutely amazing. Thanks, everyone for tuning in. It is so amazing. And I really appreciate it and I just can’t believe it. Anyhow, now it’s on with the show. Rodrigo Sanmar welcome to the podcast.
Rodrigo Sanmar 2:42
Thank you, thank you for having me. It’s a pleasure.
Bill Gasiamis 2:47
Man, thank you for being on the podcast all the way Mexico, it’s the first time I’ve had somebody from Mexico on my podcast.
Rodrigo Sanmar 2:55
How nice.
Bill Gasiamis 2:56
It is, it’s very nice, actually, because that’s amazing how the podcast goes all around the world. And all the people that I interview are stroke survivors, or helping a stroke survivor in some way, shape, or form. And that’s the unfortunate thing is stroke does not discriminate. It goes to every part of the world, e very kind of person, every nationality doesn’t matter. And unfortunately, there’s too many of us, but at least it has brought us together. Tell me a little bit about what has happened to you.
Rodrigo Sanmar Had A Hemorrhagic Stroke

Rodrigo Sanmar 3:33
Thank you, I suffered from brain hemorrhage when I was 28 years old. I was living in how can I say this, like I was on a rat wheel running faster than I could but not knowing where I was going. And I can say this now to you I was completely lost. Even though at that time, I wasn’t aware of that.
Rodrigo Sanmar 4:07
Not myself, but not everyone around me, my friends, my family, everybody was like, completely shocked when they realized what I was going through because it exploded as a hemorrhage because I was you know, working really hard, making a lot of noise around my life not listening to the real thing inside me and not taking the time to stop and realizing where I wanted to go or what I was doing.
Rodrigo Sanmar 4:40
I’m a filmmaker and I was creating a film at that moment about freedom of speech in Mexico about violence against journalists, and activists. I was traveling all around the country and at the same time, I was running an advertising company. And I was also trying to lift an association to help people who was living in the area of a dumpster.
Rodrigo Sanmar 5:14
So, you know, I was trying to fix the world, everything at the same moment. And plus, I was not having good how to say this food habits, I mean, I was eating really bad, sleeping really bad, or sometimes not even sleeping, you know, the amount of sleep, minimum. And everything was more important than myself, my girlfriend, my friends, my job, my community, everything was first. And I was the last in my list.
Bill Gasiamis 5:54
Sounds very common from stroke survivors to say something similar to you, at 28 years old. Not many 28-year-olds are interested in so many serious topics, and they’re not really going after making a big difference in the world, how did you get to the point to be so concerned and so interested about topics like freedom of speech?
Rodrigo Sanmar 6:21
I think I have always been like that. I, at that moment, as I was mentioning, I was trying to fix everything around me. I mean, we produced that same year. I mean it was 2012. And that year, I was, you know, with this association with the advertising company, and I was also making the design for the G20. Who happen in Mexico that year, and, you know, I was trying to eat the whole world in one bite.
Rodrigo Sanmar 6:58
And, in my film company, one of my closest friends, was working for article 19, which is an international association NGO, for freedom of speech. And they realized that in Mexico, there was a huge growing problem in freedom of speech, not only from the crime people, but also from the government, which was even worse, you know, for the journalist.
Rodrigo Sanmar 7:29
And I was like, yeah, we have to show the study, we have to give voice to journalists that have no voice or that they’re gone, or their families or, crying and, worried. So I was inspired by that, but I went like deep bound in the problem, and I was like, very close contact with violence and with people in the government doing really bad things.
Rodrigo Sanmar 7:55
So suddenly, it wasn’t only like, a huge amount of work, but also being, you know, a little worry about my team, and, you know, and the people who were working on the documentary, and as I was mentioning, plus not taking really care for myself, I mean, not eating well, not sleeping well, going out and going to party after all the work during the day, instead of going to bed, and drinking alcohol, to calm all that noise that came from the outside.
Rodrigo Sanmar 8:33
So that delivered me to my brain not being able to handle the whole situation. And suddenly I woke up in a hospital bed, after 16 days in coma and not knowing what happened at all. And I was completely paralyzed from my left side of my body. And the doctor explained to me like, Okay, you were about to die and I need you to be really come down, you’re safe now.
Rodrigo Sanmar 9:06
But I need your brain to come down to not be in are in a rush right now. Because it healing and peace now. But it’s funny, because before the stroke, I that if I missed a day in the office, the world would fall apart, right? That if I wasn’t there, everything else wouldn’t work and then suddenly. I realized that it wasn’t that way. I mean, I was two full weeks in the hospital in a coma, and the world kept going around, you know.
Bill Gasiamis 9:47
I had a similar experience. I thought that I was the only one that could do the work that I was doing properly, or as good as me, nobody else could do it. I couldn’t replace myself because my customers always wanted to see me. And I couldn’t find people, it was too hard.
Bill Gasiamis 10:09
There was so many not true stories that I was telling myself about why I couldn’t replace myself before the stroke and why I couldn’t do the work to find the right person to give me some time off and some rest. So I’m not working six and seven days a week.
Bill Gasiamis 10:28
So I’m not working 16 hours a day. And then I was in hospital. And I wasn’t allowed to go back to work for a minimum of at the beginning, it was a minimum of six weeks, but then all the brain hemorrhages that I had happened over three years, so for three years, I was in and out of work all the time.
Bill Gasiamis 10:53
And my, I found people to do the work, my turnover increased, we were busier than ever, and I was hardly ever at work. I was doing it from home. And it’s the one thing that made me realize the stories I was telling myself was all just not true, just bullshit that I was making up. And I think I thought I was more important than I actually was at work.
Bill Gasiamis 11:24
But I was 37 years old. And I had started my business when I was, say 26, or 27. You know, so I did put a lot of hard work into getting there. And, becoming somewhat successful. And then being able to support my family was starting to happen, all these things were happening. But I was pretty like you, tired, angry, didn’t sleep enough, didn’t eat well, worked too much, never did things that I enjoyed, that I loved always had problems at work.
Bill Gasiamis 11:59
So fixing them was always a hassle. It was such an all-consuming situation. And it just changed overnight when I had a brain hemorrhage as well, mine was from an AVM that I was born with that burst. And then while I was in hospital, everyone who I thought wasn’t capable of stepping up to help out, stepped up and they did an amazing job.
Bill Gasiamis 12:27
And all I had to do was give them the opportunity. But I never knew that that’s what I had to do. The opportunity was created when I was in hospital, and I couldn’t go to work. And we had work to do. And my clients still wanted us to do it. Even if I wasn’t there. They still wanted to work then. So it’s interesting. How big was the team that you were leading?
Rodrigo Sanmar 12:49
It wasn’t that big. Because we as a film company, we you know, we grew with the project, and we got small with no project. So we weren’t that big. But we were I mean, we were a little bigger than usual because we were making this documentary thing, which was like a big thing. And we big budget, big interest, and it’s amazing.
Rodrigo Sanmar 13:17
I mean, just listening to you right now, it’s almost unbelievable that we can’t realize this without having this stroke. I mean, this hit, I mean, it’s always there. But we live in an illusion that we are, the only one who can do the job or nobody else can do it the way I do it, or the world would fall apart. If I don’t step in the office one day, I mean, one day, it’s almost, I mean, now I can see it, but in the moment, it’s your legs talking, you know, in the world, and you can’t have perspective.
Thanks To The Stroke
Rodrigo Sanmar 13:55
And I suppose you went through a similar thing, but I’m so thankful that I went through that experience because it completely opened my perspective. And it gave me this connection with myself to be able to know that I’m even bigger if I’m not working that hard. I mean, I can create even more things if I open myself, and I give the job to other people and I allow people to do things, and I trust people to create things. And I only direct them or you know, or supervise them. But it’s a laugh, but it’s really sad that you can realize that in that moment.
Bill Gasiamis 14:39
I agree. 100%. And what I learned was that is you actually have to get good at replacing yourself. You have to start moving away from the business and working on the business, not in the business. And the more you work in the business, the more it can grow and you can bring people and give them the opportunity to step up.
Bill Gasiamis 15:00
And to take more responsibility to earn more money to work more. And then you can free yourself to do the things that you need to do. For me, what I really needed to do was get clients, my job was then how to get more clients to do more work, so I can employ more people, so that we can grow the business and it can offer better services or more services, charge more money, whatever the situation was.
Bill Gasiamis 15:26
But when I was in the business, and, and doing all the work, every aspect, quoting, working, picking up materials, meeting clients doing everything, when I was doing all of that I was missing opportunities that were there. Because I didn’t actually have the resources to help out in other areas, when people contacted me and said, We need you to come and potentially do this work for us.
Bill Gasiamis 15:55
So I was always missing out on opportunities, thinking that I was stuck inside the business simply because I was too afraid to allow other people to take responsibility and step up and do some of the jobs that I was going to do. And what was interesting. After the stroke, I became really into personal development.
Bill Gasiamis 16:17
And I had more time than ever to go to courses, to go and meet new people to get coaching to get counseling to get all these things that I didn’t know were possible before. All of a sudden I was unwell, recovering from three brain hemorrhages, recovering from brain surgery, but I had time to run a business. I had time to get personal development training, time to see my counselor, I had time to do all these things. Before I had none, it was ridiculous.
Rodrigo Sanmar 16:55
It’s unbelievable. How mindset can change your whole world. And that’s one of the blessings we have with these strokes we experienced. Because it gives you in my case, I suppose you’ve shared some things as well. But it’s a completely different perspective.
Rodrigo Sanmar 17:22
I was worried all the time, worry, worry, worry all the time for the things that had to be done. And for things that wouldn’t even happen. I mean, imagining things that could happen and when I woke up in a hospital bed, and the doctors told me like, you were really about to die. I was like, everything that was worrying you in the future. And these things that takes your sleep away, doesn’t even happen.
Rodrigo Sanmar 17:50
I mean, you were about to die. And those things were an illusion. I mean, they were never supposed to happen. And you were spending your whole day worrying about nothing. I mean, things that couldn’t even happen. I mean, that’s why I feel very thankful for the experience I had, I mean, at the moment, it was very hard, especially for my family because I was in a coma.
Rodrigo Sanmar 18:10
But for my family it was really hard because they were day by day, you know, like fighting the circumstances and dealing with the fact that I could probably not wake up the next day. So for me when I came back, it was like a rush of happiness and consciousness and love and it was like an orgasm for me when I came back from the coma. I was like I can’t believe how peaceful I can feel now I mean, it was like a baggage relief you know, from years and years of being holding on to things that didn’t even matter to me.
Rodrigo Sanmar 18:50
And and now I’m very thankful to you not only for this space to chat with me but also for creating this podcast will share so many insights and wisdom from the people who went through these things because I’m convinced that we don’t have to get to that point you know, to realize and to wake up to the life that we have now.
Sooner Rather Than Later
Bill Gasiamis 19:22
I’m convinced to it’s possible to get there before we had a stroke or a bleed in the brain and nearly died. It’s something dramatic has to happen to change for people to do that and I’m not sure what it would have been for me this is the weird thing is sometimes people ask me about the stroke and asked me you know, with all the things that I’m doing what I change anything? etc.
Bill Gasiamis 19:48
I would definitely not want to have a stroke. But if I didn’t have it and survive it and then go through all the trouble of rehabilitation learning how to walk again, brain surgery, recovery, if I didn’t go through all of that, maybe I would have been 10 years down and something more dramatic would have happened, my health would have been less looked after I would have been more unhealthy, and I would have died from a heart attack or something else.
Bill Gasiamis 20:15
And I don’t know, if I could have had any lessons that were as dramatic as the stroke that would have woken me up before I got sick Do you know, it’s really, really difficult for me to put myself in a position with the kind of mentality that I had, the kind of negative mindset that I had, whether or not I would have got to a situation in my life and a light would have come up, gone on.
Bill Gasiamis 20:48
And it would have said, It’s time for you to change Bill, before things get worse. I think in the past, I was so thick, that something really hard had to happen for me to actually wake up, I think that’s the only way that I would have woken up. So I’m grateful for it as well as preferred not to have it. Absolutely.
Rodrigo Sanmar 21:11
I completely agree with you. And I have thought about this so many times, because you have to put in the balance what you gain. And what you lose, from before and after. And, and in my case, as I was telling to you I’m very, very thankful for having went through that experience. I also tell so many people that I would love for so many people who would be able to go through an experience aside from this, but only the good part.
Rodrigo Sanmar 21:42
I mean, of course I don’t want everyone to have a stroke and to have two weeks in a coma and a hospital and people suffering of course not. But I would definitely would love to everyone could have access to the connection I have now with myself after the stroke. I mean, as you were saying, I mean, it’s better if you don’t have it.
Rodrigo Sanmar 22:04
But in my case, in the analogy that you were making earlier, in my case, what would have happened, if I wouldn’t have the stroke, it will be really, really terrible. Because I would have spent the rest of my life sleeping as I was before my stroke. And I wouldn’t change it there is no chance I would like to go back to who I was before the stroke. I don’t know if I’m telling this great or you get it
Bill Gasiamis 22:37
Perfect. I’m curious, right? So, right now, I think there’s a bit of a situation in the world and the entire planet. All the countries in the world where freedom of speech is under attack, I feel like we are being censored by governments. We’re being censored by social media giants.
Bill Gasiamis 22:58
We’re being censored by corporations and a whole bunch of different people including, and of course, I’m referring to the last few years, the COVID outbreak and all the things that we could and couldn’t say all the things that we’re being controlled in Melbourne, in Australia, where I’m from, we were in lockdown for two years, two entire years.
Bill Gasiamis 23:23
And this situation has become crazier in the last few years than I ever remember in my life. So right now, how are you still passionate about the fact that we still have these issues in society, like freedom of speech? And are you as motivated as you used to be to raise awareness in that space while you’re doing other things?
Rodrigo Sanmar 23:53
What a beautiful question. I definitely don’t want to go so close to the violence I did with that documentary that I was making when I had the stroke. I mean, it wasn’t only that it wasn’t only the documentary it was a bunch of things that were happening that year. As I was mentioning, I was trying to do everything in 2012. And as the result, I burned myself literally.
Rodrigo Sanmar 24:23
But I’m still passionate about telling stories. I’m still passionate about making films. I love it. I’m still very, very passionate about impacting or creating impact in people’s lives. I mean, I do love to create messages that can transform people’s life for the better. But the only thing is, I don’t want to film the violence and then put it in a film. I mean, I’m now writing fantasy and fiction and stories that I think that it can also create a huge impact.
Rodrigo Sanmar 25:00
But not putting myself in the in the road that I was because that definitely I can tell you, I don’t want to keep going in that same way. But I do feel very passionate about trying to wake people up. I mean, I don’t want to sound show off or things like that, but I do think that there’s a lot of people sleeping. And I also feel blessed to have that this hit from reality, to be able to reconnect with myself to be able to befriend myself again, and to reconnect and to give myself priority before everything and everyone else. And that takes me out of bed every morning.
Bill Gasiamis 25:49
I think Rodrigo, you nailed it, you said exactly. The right response, it was that there’s still a way to tell stories, without making yourself unwell in the process of developing that story and finding the information for that story and helping people to wake up.
Bill Gasiamis 26:09
Because that’s what your documentary about freedom of speech does, it helps people to wake up and it’s not that you’re more awake than they are, we’re not talking about that we’re not saying that you’re better than them, what we’re saying is, let’s bring some awareness to certain situations that maybe people need to know about. Because the more information people have, the better decisions about their life they can make.
Bill Gasiamis 26:37
And the more we can influence what happens in society, and the more we can influence what happens in governments. And the more we can hold on to our freedoms and our values and create a situation where all of the people that live with us and around us are hopefully coming together so that we can live a very meaningful life.
Rodrigo Sanmar 27:04
Absolutely. I feel incredibly powerful after my stroke, I feel like I can also reach anything that comes to my mind. I mean, I am still doing films as I used to do films before my stroke, but I know that I can now do films and now I own a sustainable housing company here in Morelia and I am creating like, different things at the same time, because the limitations of my mind went away.
The Power Of Choice – Rodrigo Sanmar

Rodrigo Sanmar 27:45
I mean, as was saying I was worried all the time, and oh my god, what if this goes wrong, but when you wake up in a hospital bed, knowing that you were about to die like this close to the cliff. I mean, you come back like, I mean, oh my god, I’m still gonna die I mean, why not to give it a try to all the things that I care about. And I’m trying to create a message with my life.
Rodrigo Sanmar 28:14
By creating my projects, I’m creating two fields now. One is fiction. And another one is a documentary film. But this documentary is not about violence. And it’s not about bad things I’m creating a documentary film, I would love to tell you a little bit more about this is that it’s a film that explores the theory that we as human beings, all of us, as human beings, just by being alive, we have the huge power of decision of choice.
Rodrigo Sanmar 28:47
And we have the power of choice at every single second of our lives. And we have the power to choose if we react to situations in life from fear, or from love. And you know the results. If you act from fear, you have terrible life, you worry, you’re always mad at everyone because you are reacting from fear, you’re scared, and that won’t allow you to live a pleasant and beautiful life as we can.
Rodrigo Sanmar 29:20
And in the other hand, if you react from love, you will have such a beautiful life because you will have beautiful relationships, you will have beautiful projects you will have. But that’s the main target of the documentary film, trying to tell everyone that it’s only a choice that you can take to change and transform your entire life.
Bill Gasiamis 29:44
It’s so interesting, acting from fear is actually a really difficult thing to do because I’ve done it before and I try not to do it as much as I used to and I try to become aware of myself when I’m doing it. So acting from fear, is your might you’re using fear to motivate you. Because you’re afraid of something. And you’re doing most of that in your head.
Bill Gasiamis 30:13
That’s where you’re creating the majority of the fear and the action, to take action, on fear and because of fear, you’re taking action with your gut, and your gut is fearful. That’s what’s happening. When you’re taking action from love. And you choose love, you’re basically going to your heart, that’s where the decision is being made.
Bill Gasiamis 30:35
And, if you can choose love, and go to your heart, you’re making decisions that are best for you and best for the world. But there’s difficult decisions to make that sometimes that are best for you, and best for the world that other people are going to be upset about. And that sometimes can cause fear for some people.
Bill Gasiamis 31:01
And it’s this loop that if you’re just in it, and you’re not noticing it, and you’re not aware of it, you become all consumed by it. And your whole life is a reaction, none of your life becomes a conscious decision-making planned-out process, it all becomes I’m responding to other elements around me and none of it is about what I want, or what I want to achieve, or what I want to plan for, or focus or work towards.
Bill Gasiamis 31:39
And I think there you go, I think that’s a beautiful story to tell people and to give them the opportunity to understand the difference between acting out of fear and acting out of love. And what’s required. acting out of love is not easy. What’s required is to put yourself first and to put yourself in a situation where you have to now tackle some difficult things. And some of those things might be when you act out of love that might upset other people.
Rodrigo Sanmar 32:10
Absolutely. And there’s some people that question themselves, like, Why do all these terrible things happen to me? And then the meaning of this story, I’m trying to create is that they can change it. I mean, it’s a daily process where you have to recognize where are you reacting to life from, I have five characters in this documentary. They’re all women.
Rodrigo Sanmar 32:43
And they’re all women that have been through very, very difficult situations in their lives, different kinds of situations, all of them. And they all live in different countries, but they are women that choose not to play the victim, and not to sit down to cry because of what happened to themselves.
Rodrigo Sanmar 33:01
But instead, they choose to learn, grow, and became powerful women after the situation. So if they can, and if we could get up from the hospital pet, and you know, and do what we had to do to continue our life not only continue to our lives but improve our lives and to live the lives that we want to live. I mean, I think everybody can do it, because we all have the power to choose.
Bill Gasiamis 33:33
I’m curious about the men you say your documentary is about five women, do men find it harder to go to this place of acting out of love instead of fear?
Rodrigo Sanmar 33:49
Amazing question. Nobody asked that before but it’s great. No, it’s really casually they were all five women, I didn’t decide that they were going to be women. They just showed up. The first girl showed up and she motivated me to tell the story. But then came the second one and the third one and then I ended up having five women and there’s no reason of gender you know, it was just the situation and I’m gonna tell you that the only man figure or character that will probably not appear but participate in the study will be myself.
Switching Mindsets
Rodrigo Sanmar 34:37
I mean, I was able to see these characters these women, I think only because I went through a difficult situation by myself. So I have a very clear view in front of me. I have it very graphic in front of me. I had to take the decision when I was in a wheelchair after the accident. I was depressed I was mad, I didn’t want to eat, I didn’t want to speak to anyone, I was in my darkroom I wanted no contact with the world because I was mad at the world and myself and everybody.
Rodrigo Sanmar 35:10
So it was a process, a complicated process. But suddenly, something happened. That made me realize that that was the only way that I wasn’t going out of the situation I was stuck in. So I had to make this switch in my mindset. But it was, I have it very clear in front of my mind, it was switched my mindset that allowed me to start eating a bunch of food, making exercising the very first second in the morning, I was able to get up from the wheelchair, and, and in my mind was able to do that I think everyone’s mind is able to create the life they want to live and to get unstuck.
Bill Gasiamis 36:01
You know, that dark space you were in where you didn’t want to see anyone talk to anyone be around anyone? Did you know that that was necessary for your next phase? Or were you there unwillingly worried about being so withdrawn and in such a terrible state. For me when I was in that dark stages, initially, I didn’t realize that it was necessary for me to be there, because there was something to learn there.
Bill Gasiamis 36:32
And at the beginning, I didn’t enjoy it. I didn’t like it, I couldn’t do it. Not that I enjoyed it later. But later, I took a different mindset to what it was about. Okay, this is part of the cycle, it’s part of the down part of the cycle, if I stay there for a little while, and I allow it to go through the cycle and pass by itself, I’m going to be out of it soon and I’ll learn something.
Bill Gasiamis 36:59
And usually when I did that, I was out of it quick, and I learned something sooner. When you were in that dark time. How did you respond to that? Like, were you okay to be there? Did you feel okay being there? Or was it something that you needed to shift?
Rodrigo Sanmar 37:20
I was leaving a nightmare, I had this huge battle inside my head. I’m not gonna tell you never, never, never happened to through my mind, the word suicide never, never never. But I was really having a terrible time. And it was unbearable, the situation in my head, because I was like, I was convinced that my life was over that my world fell apart.
Rodrigo Sanmar 37:48
I mean, I was in a very dark place, as you were saying, but I think the community around me, my family, my friends, they never allowed me to go deeper in that dark hole. And, that energy around me realize made me realize that I wasn’t alone, that there was an energy full of love surrounding me.
Rodrigo Sanmar 38:13
And that I could take advantage of that to you know, to leave that dark place where I was. So there was a hit something hit me one day, and it was like, Rodrigo! Stand up you can’t get close in this thing. Because you keep digging.
Bill Gasiamis 38:34
Yeah. And, you know, that something that hit you? Do you know what it is? Can you describe it?
Rodrigo Sanmar 38:41
It’s very difficult to mm, I haven’t been able to describe it yet. I keep working on that. But there’s, there was a clear vision, as I told you, right now, there was a very clear vision, that that place would only take me deeper, I mean, that if I could, that if I could go and take this switch. I mean, this switch of mindset, I would probably end up in a very, very bad place.
Bill Gasiamis 39:20
Yeah, I think there’s gonna be a lot of people who recognize what you’re saying, maybe they’re in that situation right now. And maybe they’re having a moment where they’re about to switch over from one way to the other way. I think it’s very valuable to do that and to just get curious about it. So for me what I tried to do what I learned after I did a lot of personal development, training.
Bill Gasiamis 39:44
What I learned was that I could get curious about what I was experiencing rather than overthinking and worry about it. I could just ask different questions about it. You know, something like, why am I in this situation? Or what can I learn from this? Or how long is this going to last? Or instead of I hate being here, I don’t want to be here. I don’t want to do this.
Bill Gasiamis 40:11
It’s more empowering to just ask questions out of curiosity, than make statements of fact, like, I hate this. I don’t want to be this, this is too hard. That might be the case. But for me, I think it was better that I just became curious about, here’s somewhere I’ve never been before. This is interesting. Wow, I wonder what I’m going to learn from this.
Bill Gasiamis 40:37
So that’s kind of the approach that I took. And it didn’t work straight away. Don’t get me wrong, I wasn’t good at it all the time. But I have got a bit of a habit now. And I can now go through the process of being in a tough time. And then, just kind of sitting in it for a little bit. And then getting comfortable being uncomfortable, and not minding that I’m uncomfortable.
Intro 41:05
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 41:29
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 41:48
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Rodrigo Sanmar 42:08
Was thinking about something listening to you. Probably less than a year after my stroke, I found out that a friend of the family went through a similar situation. Exact same situation brain hemorrhage. And my first instinct reaction was like, Please take me right now to where she is. I mean, like in this moment, I have to be by her side. Because I know how dark it will get for her right now.
Rodrigo Sanmar 42:43
And it doesn’t have to be that way. I mean, if someone would tell me, you know, the process and experience and that the world wouldn’t completely fall, it would be a lot easier for me. And so I went there and I was able to talk to her and firsthand, right after her accident. I mean, when she was awake, obviously. And I spent the whole day just speaking with her, and trying to calm her down and letting her know that the world would still go around. And her life wouldn’t end at that moment, you know?
Bill Gasiamis 43:24
Yeah. And it’s possible to live a really fulfilled life. Even if you have serious, visible or invisible disabilities, it’s really possible we see it all the time. That’s the Paralympics full of people who have physical disabilities that are living the best life they can possibly live, you know, and overcoming a lot of difficult times.
Bill Gasiamis 43:46
And I’ve had so many people on this podcast that are going through things that I can’t imagine, because I’ve never had them, you know, vision problems and hearing problems and all sorts of issues. And yet they still doing amazing things, they still willing to come on to a podcast, they still willing to you know, they’re raising their families still somehow, some of them have got one child, some of God’s three children.
Bill Gasiamis 44:13
They’re still doing all the things that we all do. They just go about it a different way. And of course, they would prefer not to be in that situation where they’re doing all those things after a stroke. But a lot of those people are not letting what the stroke did to them or caused to them. Get in the way of living a full life. Of course, they do need to do things differently, right.
Bill Gasiamis 44:38
So they need to when they’re tired, they need to rest now. They need to not take on too many things. They need to be able to speak out and say I’m tired. I can’t do this. They need to be able to do things that they love and brings joy to their lives so that they’re experiencing some joy and some perhaps passion projects.
Bill Gasiamis 44:58
They need to do all sorts of things, what I find is a lot of people after a stroke, they get creative, and they find some way to get some creative energy together and to express themselves in a way that perhaps they haven’t expressed themselves before. And that’s me, that’s classic me. I never knew about podcasts, and you never knew about anything before the stroke, you know.
Bill Gasiamis 45:22
And all of a sudden, now, you know, I’m a podcast, I’ve done 200 episodes. And I’m talking on a topic I never knew about or never would have talked about before. But through my own experience, and through the amazing community, as soon as I asked them, would you like to be on my podcast? Everyone says yes. Through that we can do this thing that I never, in 100 years would have done if it wasn’t for what I went through. It’s just unbelievable. And I’m talking to somebody in Mexico now. You know, it’s amazing.
Rodrigo Sanmar 46:01
That’s amazing. Congratulations for having the mindset because also in the other in the other hand, you probably know this. Well. I mean, there’s this beautiful site where people come up, and they get up from the circumstances, and they grew up and they get better, and they get creative.
Rodrigo Sanmar 46:23
But there’s also, the other hand, and that’s why I found really, really helpful, your podcast, and I’m going to share it with as many people as I can, because I’ve seen in this world, I’ve seen so many people sitting down crying their losses, and their shames and their victim roles.
Rodrigo Sanmar 46:43
Oh, no, this happened to me. I mean, my whole life is you know, down I mean, off. And they were like, Dude, we’ve been through the same thing. I mean, what’s making you sitting down on a wheelchair to cry for your situation, and the rest of us fighting to get back our lives and to prove them even better lives? I mean, there’s two perspectives, as we were saying, You have always two choices.
Bill Gasiamis 47:13
Yeah, that’s exactly what the podcast is about. I was talking about it yesterday to a friend of mine, is the 200 people, or more that have been on the episode on the podcast already. They are the ones that are like us, they’re the ones that have moved beyond that really terrible stage. And they are attempting to learn something and share something from what they’ve learned.
Bill Gasiamis 47:36
Did you need to head out for a minute, do you need to check something? And as a result of that, what I am very aware of is there’s at least another 200 people in the world that are listening to this podcast that are perhaps not at the stage that we are. And what I didn’t have when I was going through the tough times at the beginning, 10 years ago, I didn’t have a podcast that I could tune into and listen to, there was none of that stuff.
Bill Gasiamis 48:10
So what I’m hoping that the podcast is doing is it’s finding those people, and they are coming to our stage a little bit quicker than they would have if they didn’t find it.
Rodrigo Sanmar 48:24
Absolutely. And I think it’s an amazing thing. Really thank you for doing this because I would love to have had this earlier. I mean, I’m on a couple of communities on Facebook or Instagram where stroke survivors are in Spanish as well. And you can see these two poles, mean people fighting, making exercise, creating, working, surviving and there’s always stories like “oh my god, what am I going to do my life is over I can do it.”
Rodrigo Sanmar 48:59
So we have a responsibility, you and I, and the people who were able to not only survive, but thrive with a different mindset and to be able to build new things. And we need to share this with the people because it will make their road a lot easier than usual.
Bill Gasiamis 49:22
In the English world, I’m noticing that there are more and more people coming online now presenting podcasts in this space. And that’s awesome. That’s amazing because that means that they’re going to reach so many people in the Spanish-speaking world. Is there a lot of content? Are there places where people that only speak Spanish can go to, to listen to podcasts and that type of thing about stroke recovery?
Rodrigo Sanmar 49:49
I haven’t research in the podcast area. But there is a lot of information reading in articles and communities, as I was mentioning, groups in Facebook in Spanish. Because you know, in my case, Mexico and Latin America, I mean, it’s like, huge amount of people.
Rodrigo Sanmar 50:14
And yes, there’s a lot of information. Probably there’s a little bit more in English. But I have a lot of information in Spanish. And it will be a good thing to research and to try to help to increase the community about maybe a podcast in Spanish. Do you see yourself like, making your content, subtitles or you know, translated or something like that?
Bill Gasiamis 50:47
It will be lovely
Rodrigo Sanmar 50:48
Because it will increase your community.
Bill Gasiamis 50:51
Yeah, it’s such a massive job. As you know, producing, recording, editing a podcast is such a massive job for me, I need help to do it all. So what we do is, we record an episode, it takes usually about an hour, and then I edit it, and then I have somebody transcribe it into English only. And those subtitles go on to the YouTube version of the podcast. And then if somebody wants to get the transcription, they can go to the website recoveryafterstroke.com/episodes.
Bill Gasiamis 51:27
And they can click on the podcast episode that they choose. And then at the top, they can actually see that entire transcription of the entire interview and download a PDF version of it if they want. And that takes about eight or nine hours per episode to do, and I have somebody helping me doing that, right. So if I had to do it in another language, which I have no clue about, I don’t understand Spanish. If I had to do it another language. It’s very resource heavy.
Bill Gasiamis 52:01
So unless perhaps there’s somebody out there who is Spanish speaking and English speaking, and is happy to volunteer and do that for me, that will be fantastic. But at the moment, it’s really difficult to do. And I think, I felt like it was really important to at least have the English transcription because I know that people learn and listen in different ways. So some people enjoy the video. That’s why it goes to YouTube.
Bill Gasiamis 52:33
Some people enjoy listening in the car, or on the train or wherever they are, that’s why I put it on audio. And then some people and I do sometimes I like to print out things on PDF and circle things that I like, sometimes I’ll put that on my bookshelf, a PDF that I printed. So I thought that it was necessary to have at least three ways to consume it differently. But never considered another language.
Rodrigo Sanmar 53:02
I was just thinking about it, because probably, I mean, I’m gonna do some research about if there’s someone making a podcast about these issues in Spanish, and there will probably be some kind of collaboration but I just imagined this in my head and I would let you know if that happens some time
Life After Brain Hemorrhage

Bill Gasiamis 53:22
That will be fine, that will be perfectly fine. So how long were you in rehabilitation for and doing all the recovery stuff after your stroke?
Rodrigo Sanmar 53:33
Okay, I spent six months on a wheelchair after the stroke, then I was able to get up and I started walking with I don’t know how you say (inaudible) not one stick but two sticks.
Bill Gasiamis 54:05
Yeah some kind of like a cane or something.
Rodrigo Sanmar 54:09
And then I started walking with a stick and then I decided to take the stick away, only it was a decision of myself because I realized that I was hanging myself into the stick, all the weight of my body. So I decided to drop it. And when I started walking by myself, I started also making a little exercise, like jogging a little bit. Then I started jumping in the pool and I started making little movements to swim.
Rodrigo Sanmar 54:54
I think it was about an intense one year like very, very, very intense. But until today, I keep doing rehab almost every day. I mean, the first years always in a clinic and with specialist people and trainers and therapists. But then I learned so much over the years, from taking a lot of therapies and different techniques that I’m now able to do my rehab and my exercises and my therapy every day by myself.
Rodrigo Sanmar 55:31
And I still go to the pool, and I still go jogging up and I do a little Pilates and I do a little Yoga and I have tried, pretty much everything. A funny story I used to live in Madrid 10 years ago, before my accident. And my best friend, when I was living in Madrid, he was a guy from Chile. And he was a doctor, well, a master in neuroscience therapy.
Rodrigo Sanmar 56:08
And it was pretty funny, because at that moment, we didn’t realize that I was going to need that, that specialty that he was studying, right? Then I came back to Mexico. And he went back to Chile. And when I had my stroke, when I was able to be independent again, after a lot of rehab, I took a trip to Chile, and I was on a workshop with him that he created he and a yoga teacher created a workshop for me.
Rodrigo Sanmar 56:43
And we created this thing that was called Urban therapy, we went to travel through South America, and you know, jump in a plane, jump in a boat, jump into the taxi, run to get the bus. And then he was correcting every single one of my moments on the road. And I love that urban therapy, we name it.
Rodrigo Sanmar 57:05
I mean, there’s always a way to get up, to recover, to work, to create your life. It’s only if you’re willing to do what it takes to get up. I mean, I’ve been reading a lot of coaching and self awareness and self growth since my accident, and it gets me to a point where I now feel unbreakable. I mean, I feel like I can actually create and reach everything I want and everything that happens through my mind.
Bill Gasiamis 57:44
Yeah it’s true. You can, I mean, if people have built airplanes and created cars, and built roads, and built massive buildings and bridges and everything like that, if people have done all of that stuff, well, there’s no reason why we can’t do something that’s smaller scale than that.
Bill Gasiamis 58:06
And what that demonstrates though, is that nobody can build the airplane on their own, they need a team of people specialists in many, many different fields, to create that, to bring that airplane into a situation where it’s possible to fly, you know, and to create that bridge to go two kilometers or 10 miles over water. You have to bring people together, you have to create a community and share the skills that other people have that you don’t have.
Bill Gasiamis 58:39
And this is a collaboration, the whole thing is a collaboration. Doing it on your own is not possible. You have to collaborate with other people, offer them something that you can and have the ability to accept something that they are offering you and not to be embarrassed or ashamed that you have to accept some help or that you don’t know everything and you don’t have all the solutions. You never will have this too many things to know.
Finding Solutions
Bill Gasiamis 59:07
There’s no way we’re going to know them all, we need to ask people for help and collaborate. And together we can achieve a lot more. But definitely, in the mind, is where our biggest weaknesses are, in the mind is where our biggest obstacles are, if we can focus the mind on solutions rather than problems, you will get more solutions. If you focus on problems, you will get more problems.
Rodrigo Sanmar 59:35
Absolutely. And in every area of our lives, there is this amazing North American saying that people in the US, they say this phrase that I love that is “The angrier I am the more a**holes I meet”. If you concentrate in this bad mood then of course bad things will have happened to you all day long. I mean, like what you were just saying. If you can’t achieve something because it’s too big, you only have to get a team and the resources, you have to put together to create it.
Rodrigo Sanmar 1:00:13
But the important thing is, will you allow yourself to take the first step on the direction that you want to go? Because that’s where everything starts, or you keep the fear that you won’t be able to achieve it because everything will go wrong, and you don’t start anything, never.
Bill Gasiamis 1:00:33
Yeah, I completely agree. So in Mexico, what’s the medical system like? I know in America, it’s a decent medical system, but they have some challenges with a lot of people if you don’t have insurance, you don’t get good support, you have to pay a lot of money to become healthy and you live with a debt.
Bill Gasiamis 1:01:00
In Australia, our medical system is paid by the government, through our taxes, but it’s all done by the government. What’s it like in Mexico, how does the medical system work there?
Rodrigo Sanmar 1:01:14
Not that good. In my particular case, I didn’t have an insurance at the moment. So my family had to pay for everything. And it was very expensive, thank God, my brothers and my family got together and they were able to went through the situation and to keep me alive. It sounds hard, but it was like that.
Rodrigo Sanmar 1:01:46
There’s many people that can’t have what I have, especially with private doctors, private hospital, because when my accident happened, my friends took me to a public hospital that was closed from where we were. And kept me on the waiting floor for so many hours, I spent 36 hours with my brain hemorrhage in the hospital. And they didn’t know what to do. I mean when situation was coming like really worrying.
Rodrigo Sanmar 1:02:26
My brother traveled from a different city, and he moved everything he needs to move to put me in a private hospital and get me a private doctor, and they saved my life that way. Because I have no idea what would happen if my family wouldn’t have put the resources and the energy and the efforts to keep me alive, I wouldn’t be here talking with you right now.
Rodrigo Sanmar 1:02:49
That simple. And there’s a public health system, but it’s not that efficient. And also, not everybody has access to it. I mean, it’s not universal. So there’s this new government, well, not that new, it’s for four years now. I’m not gonna get political, but it’s kind of unusual regimen, here in Mexico.
Rodrigo Sanmar 1:03:19
We’ve been through probably 80 years of, of the same regimen or political system, that it’s kind of right wing. And there was a lot of corruption, a lot of bad people doing bad things in the government and we’re very used to it. I mean, all my life has been like that, until I’m not sure because it’s working on it right now. And I’m not sure if this government is going to change it, but I think they’re trying to change things.
Rodrigo Sanmar 1:03:54
They’re trying to break corruption, like, totally. And they’re trying to care more for the people and for the people who have less money, and not trying to protect corporates and to allow them not to pay taxes, just because they are friends with the politicians. And so I’m trying to trust that things are changing a little bit right now.
Rodrigo Sanmar 1:04:20
And they are putting an effort on making Universal Health System free for everyone. And I hope they can make it. I mean, you can change the whole thing in three or six years, because it’s been bad for 80. But I hope that could change a little bit.
Bill Gasiamis 1:04:40
Yeah. Fair enough. I understand how difficult it can be. So when do you expect your current project that you’re working on to be complete and available for people to review the documentary that you’re doing?
Rodrigo Sanmar 1:04:57
I hope it becomes civilized next year, because it’s been on my head for more than a year now, but I’m working also on. Look, I’m gonna show you real quickly, this house where I am now, I built it. This is the one of my sustainable housing projects. Look at the view.
Bill Gasiamis 1:05:18
Aha, wow. Yes.
Rodrigo Sanmar 1:05:22
And these are houses with low impact, completely solar powered energy. And some factories make them more sustainable than our regular house. But it was a huge success. This small project, it was like my pilots, to see if there were planes. And I was doing construction, and it was sold out already.
Rodrigo Sanmar 1:05:55
So there’s a lot of people who wants these kinds of houses. So I’m starting now a project that is 10 times bigger, now I’m building 100 houses. So that has delayed my documentary film a little bit , but I’m committed to finish the script this year, and probably 50%, to be able to release it next year if possible.
Bill Gasiamis 1:06:21
Fantastic. Well done. Congratulations. Thank you so much for being on the podcast. And I look forward to following your growth and your path, man. It’s really lovely to hear from you. And to get somebody reached out from Mexico, you’re the first person in Mexico to contact me to be on the podcast. So it’s really amazing. I really am grateful.
Rodrigo Sanmar 1:06:52
Thank you for the time, I’m grateful too, I mean, it’s very fulfilling to have these conversations and you look like an amazing person, like very connected and conscious and I thank you for the time and for the sharing, the energy. Let’s keep in touch. I’ll keep you posted on the documentary. And if I find some someone who could be good for collaboration with Spanish podcasts about the related topics, it will be amazing to let you know.
Bill Gasiamis 1:07:23
Thanks, Rodrigo.
Rodrigo Sanmar 1:07:25
Thank you for your time.
Bill Gasiamis 1:07:28
Well, thanks so much for joining us on today’s episode. Rodrigo is an amazing guest. He’s doing great things. And he’s an example of how much you can do and achieve after stroke. Now he’s been on the journey for 10 years, similar to me. But that doesn’t mean anything, it means that you can work towards your goal, and you can move towards achieving something every single day just by focusing on solutions, rather than problems.
Bill Gasiamis 1:07:56
To learn more about my guests, including the links to find them on social media. To download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you would like to support this podcast, the best way to do it is to leave a five star review, and a few words about what the show means to you, on iTunes, and on Spotify.
Bill Gasiamis 1:08:20
If you are watching on YouTube, comment below the video, click the Like button. Click the subscribe button. Click the notifications bell so that you can get notifications of future episodes as they become available. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier, and that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Thanks so much for tuning in. I look forward to seeing you on a mixed episode.
Intro 1:08:56
Importantly, we present many podcast 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 and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:09:30
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 is a substitute for the advice of a health professional.
Intro 1:09:51
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 things you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:10:17
While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Life After Brain Hemorrhage – Rodrigo Sanmar appeared first on Recovery After Stroke.
1 hr 11 min
August 01, 2022 Living With Aphasia After Stroke – Shannon Nelson
Shannon Nelson is a young stroke survivor who has achieved great results in overcoming aphasia and other deficits caused by stroke.
Instagram
Highlights:
01:50 Introduction
05:19 Patent Foramen Ovale (PFO)
08:24 Initial Stroke Deficits
14:04 Dealing With Apraxia
25:49 Living With Aphasia
31:07 Asking The Right Questions
39:52 Therapy After A Stroke
46:21 Aphasia And Alcohol
54:51 Recovery During Pandemic
1:00:22 A Night For Aphasia
Transcription:
Bill Gasiamis 0:00
Is your aphasia is it worse at some times of the day? Is it better at some times of the day? When is the best time for it?
Shannon Nelson 0:08
At the end of the day, particularly if I’ve worked and when I’m tired when I’m stressed, when I’m excited. So yeah, so anytime, but particularly at the end of the day, so I worked three days a week now. And I work three days in a row by Thursday, my Aphasia really plays up.
Intro 0:54
this is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:06
Hello, and welcome to episode 205 of the recovery after stroke podcast. Thanks to everybody who’s reached out so far, and asked to be a guest on the show I really appreciate it just makes my life a little bit easier when people reach out and offer to be on the show. And actually, it’s a really good experience that people do come on the show share their story makes a massive difference to them and their recovery.
Bill Gasiamis 1:31
And maybe to be able to share your story, it will be a good thing for you too. So if you are a stroke survivor with a story to share about your experience with stroke, and you’ve been thinking about reaching out to be a guest on the show, but we’re waiting for the right time to reach out. Or for the right sign this is it.
Introduction – Shannon Nelson

Bill Gasiamis 1:50
If you go to recovery after stroke.com/contact, you will find a form that you can fill out to apply to be a guest on the show. As soon as I receive the form. I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Now my guest today is Shannon Nelson, an ischemic stroke survivor who at 45 is living with aphasia. Shannon Nelson, welcome to the podcast.
Shannon Nelson 2:21
Thank you for having me today.
Bill Gasiamis 2:24
Thank you so much for joining me. Tell me a little bit about what happened to you.
Shannon Nelson 2:28
So I went to bed as normal on a Sunday night. It was Mother’s Day 2018. And I was fine. And then I woke up at three o’clock in the morning to go to the toilet. And I was fine then. And then I woke up again at 5:30 and I was thrashing around in bed and then I fell out of bed.
Shannon Nelson 3:02
And my husband Stuart tried to rush around the bed and try to pick me up and he couldn’t. And he recognized my stroke straightaway. So I had the facial droop, couldn’t lift my arms, and I couldn’t speak. And I remember him saying to 000 operator.
Shannon Nelson 3:29
I think my wife is having a stroke. So the ambulance officers arrived about 10 minutes later. And they agreed with him. And then they because I was between the bed and the window. They struck me into a proper mat and drag me down the hallway of a house.
Shannon Nelson 3:58
And then I saw Gemma, my daughter holding the dog in the doorway of her room. And I began to cry and I said to myself, I might not get through this. So I arrived at Box Hill, approximately 6am And I was diagnosed I was met by the stroke team.
Shannon Nelson 4:30
And I was diagnosed with the left middle cerebral artery stroke. It was a clot. So I had the clot busting therapy at 6:20 and then I was transferred to Royal Melbourne Hospital for clot retrieval. And the clot was retrieved at 7:35am so lucky Stewart heard me get up to the toilet because I was weak in the four and a half hours of the clot busting therapy.
Bill Gasiamis 5:10
Yeah, pretty dramatic. Do they know what the cause of the stroke was of the clot?
Patent Foramen Ovale (PFO)

Shannon Nelson 5:19
I think later, I had an echocardiogram at Royal, Melbourne at Box Hill. And they found a hole in my heart.
Bill Gasiamis 5:37
Did you have any indication? Did you know at all about the hole in your heart? Did you have any symptoms around that? And stroke was the first symptom that you had that you became aware of the PFO?
Shannon Nelson 5:52
Yeah.
Bill Gasiamis 5:52
Yeah. So you’ve gone to Box Hill Hospital initially. And then did you end up at the Royal Melbourne Hospital? Did they transfer you for some reason?
Shannon Nelson 6:08
So Box Hill doesn’t do clot retrievals. So they transferred me to Royal Melbourne to do the clot retrieval.
Bill Gasiamis 6:21
And a 45 would you have considered yourself pretty healthy otherwise?
Shannon Nelson 6:28
Well, yeah, I had weight loss surgery two and a half years beforehand. So I was under 70 kilos so I was walking most days.
Bill Gasiamis 6:55
So it sounds like you were on a journey a little bit earlier to become healthier. And do you think that that journey that you went on helped you in your recovery?
Shannon Nelson 7:06
Absolutely. I’ve said all along if I didn’t have the weight loss surgery, I would have been dead, or I would have been in a nursing home. Because I was fit.
Bill Gasiamis 7:23
Yeah. So it helped you. So what’s it like, leaving your house going to hospital? Were you aware of your surroundings? And what was happening? Or did you go there in a different state?
Shannon Nelson 7:38
No, I was aware. Yeah. I was fluctuating in and out of consciences. But I was aware.
Bill Gasiamis 7:52
So when you woke up from hospital the first time, did you have an idea that you had a stroke? Were you aware of all of it?
Shannon Nelson 8:08
When my husband said to this 000 operator, I think my wife is then having a stroke. It dawned on me that I was having a strike.
Shannon Nelson Initial Stroke Deficits
Bill Gasiamis 8:24
When you woke up, what were you left with? What kind of deficits did you have to deal with?
Shannon Nelson 8:28
I couldn’t speak and paralyzed in my right side, I was walking in the next day. And I was raising my hand by day three, but I have no usable function in my right hand.
Bill Gasiamis 8:57
Yeah. How long has it been? How many years?
Shannon Nelson 9:02
Four years?
Bill Gasiamis 9:03
And where’s your right hand now? Are you able to use the right hand?
Shannon Nelson 9:07
Oh, yeah, I’m using the right hand I taught at work. I use writing. Six or seven months after my stroke, I write 35 Christmas cards with my right hand. I was determined to get my right hand function back.
Bill Gasiamis 9:30
Do the writing looked terrible or was it decent?
Shannon Nelson 9:32
It was really decent, actually.
Bill Gasiamis 9:38
That’s good. So people on the other end knew that it was a letter from Shannon, and they knew what you were saying.
Shannon Nelson 9:46
And I wrote on each Christmas card I’m writing this with my right hand.
Bill Gasiamis 9:57
Wow. So that was a big deal it sounds like it was a really big deal for you to write those Christmas cards out?
Shannon Nelson 10:04
Yeah. And I address them all with my right hand as well.
Bill Gasiamis 10:11
So, is that something that you were looking forward to? Did that just come up out of nowhere you decided that that’s what you’re going to do and give it a try? Or were you really impacted by the thought and the knowledge that your right hand side wasn’t working, as it did prior to the stroke?
Shannon Nelson 10:31
So I used to practice with my left hand writing before my stroke, so I was able to write with my left hand, so the handy thing they gave me was a whiteboard in the hospital on the first day, and I was able to use my left hand, so I was finally able to communicate with my family and the doctors.
Shannon Nelson 11:05
But I did weekend, Friday and Saturday call it, my aphasia is coming right now. It was sort of like a two tiered course therapy course. So the object it was run by an OT and a physio. And it got me back into handwriting.
Bill Gasiamis 11:58
Okay. So why would somebody practice writing with their left hand? Even though they don’t need to before the stroke? What was going on in your mind there? Just something for fun?
Shannon Nelson 12:15
I don’t know.
Bill Gasiamis 12:21
You’re strange like that. Yeah okay, fair enough. I mean, it’s kind of cool to be able to write with both hands. I get it. I’ve never met anyone that said, I’m just gonna start writing with my left hand one day, just because they felt like it well, their opposite hand.
Shannon Nelson 12:34
Yeah, well, I don’t know. I needed it some time down the track, which I did.
Bill Gasiamis 12:46
It sounds like you were pre empting something and you’re planning ahead?
Shannon Nelson 12:52
Yeah.
Bill Gasiamis 12:54
That worked out good on you. Well done. So clearly, you lost your ability to speak and then.
Intro 13:01
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 13:26
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 13:45
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. Add to the website now, recoveryafterstroke.com and download the guide. It’s free.
Dealing With Apraxia
Bill Gasiamis 14:04
Was that ability to speak lost because of issues with your vocal cords. I know some people who suffer loss of speech as an issue with the vocal cords the strength and the deficits there, or was yours cognitive totally aphasia.
Shannon Nelson 14:21
Apraxia. So Apraxia is defined as having difficulty planning and using the muscles during speech. So I knew what I wanted to say. But I couldn’t get the words out. So I slipped out the F word in frustration at my husband the day before I actually spoke deliberately. So the first words I said was 12345. And the speech therapists I mirrored the speech therapists. So I knew what to say, but I just couldn’t get the words out.
Bill Gasiamis 15:21
Which was the F word again. Can you repeat the F word for me?
Shannon Nelson 15:26
No. F U C K.
Bill Gasiamis 15:33
You got that out? Was that the first word you said? How rude.
Shannon Nelson 15:38
The day before I actually spoke. So yeah, I couldn’t repeat it.
Bill Gasiamis 15:48
You couldn’t repeat it because you didn’t want to?
Shannon Nelson 15:50
Because it was an automatic F***. So I was so frustrated with my husband, because he was trying to finish my sentences.
Bill Gasiamis 15:50
One of my pet hates is when people try and finish a sentence. I know that sometimes with people with aphasia, when they can’t come up with the word, there’s this real urge to finish the person sentence or to give them information that might help them get there. So is it helpful sometimes when people do that? Or is it always better to just let the person go through that process?
Shannon Nelson 16:38
I don’t mind because my family and friends have been patient with me and let me speak. But in the workplace, I just let it go.
Bill Gasiamis 16:58
I get really frustrated when you see adults answering for children. And so I love hanging out with young kids when we get together with families that have got young kids and all that and I’ll go up to them or start a conversation. And then the parents will chime in and they’ll come in and they’ll speak on behalf of the child as if I asked the parent that question.
Bill Gasiamis 17:25
It drives me absolutely insane. I don’t know if it’s my place to say no, I don’t want you to answer the question for your child, I want your child to answer the question, in case they get offended or something like that. I don’t know how to handle it. But I just can’t understand why it’s necessary for the adult to get involved in that conversation. Especially when the conversation is not with them.
Shannon Nelson 17:53
Yeah, I don’t know the answer to that. But yeah, I just in the workplace. I don’t pull them up. But in the community, I say to people, bear with me I’ve got aphasia, I’ve had a stroke, just bear with me I’ll get the words out eventually.
Bill Gasiamis 18:22
At home. After four years, are you still reminding everyone to hang on a sec? Just wait, wait, wait.
Shannon Nelson 18:30
Yeah, well, I say (inaudible) a lot. Because my aphasia is between verbs and nouns, and I say (inaudible) a lot. And my son Shawn, who slept through the whole ordeal, he often reminds me, Mom, I don’t speak strokes. And, yeah, I say to my husband now and then just let me get the words out. So they learned.
Bill Gasiamis 19:19
Yeah. It’s a difficult adjustment for them. I imagined, because they don’t understand stroke. They definitely don’t understand apraxia. They definitely don’t understand aphasia. And they are just going back into the normal mode of the same pace that they always spoke to you at. And the same way you always spoke back.
Bill Gasiamis 19:42
So it’s a real challenge for them to adjust even though it’s been four years, compared to how long they’ve both known you for. It’s only a short amount of time. And often they’re not speaking to people with aphasia, most of the rest of society doesn’t have aphasia. So having to adjust backwards and forwards.
Shannon Nelson 20:08
Yeah. And I think we’re adjusted to a new kind of normal. But I think my children see me in the same way as before my stroke, so they don’t treat me any differently now. We joke, and we’ve laugh so yeah.
Bill Gasiamis 20:40
Does aphasia interfere with writing? So I’m completely oblivious. I don’t know about aphasia. So when you’re trying to speak words don’t come out, you know what you want to say. But when you’re writing them, do they get stuck in the same way?
Shannon Nelson 20:55
No, so aphasia is a language disorder that affects reading writing numbers, and it can be in speech, it can be a combination of the two, but my aphasia is speaking, but my numbers are fine. And that sort of thing. In saying that, I can’t add it up in my head anymore. I used to be really good at math, but I have to write. Whit simple math, I have to write the numbers down now. But my reading wasn’t affected. And my comprehension wasn’t affected as well.
Bill Gasiamis 22:02
So your numbers, when you’re writing them down, they add up correctly, and then your brain doesn’t know that the numbers are correct?
Shannon Nelson 22:10
Yeah.
Bill Gasiamis 22:12
But doing it in your head, you don’t know how to get to the correct number?
Shannon Nelson 22:16
I can do simple. So eight plus five equals 13. But when I get larger numbers, or subtracting, I have to write them down.
Bill Gasiamis 22:35
Okay, so you write them down, you look at that, you know, it’s the correct answer. Because, you know, numbers and basic numbers and math. But when you’re doing, say 27 plus 37.
Shannon Nelson 22:51
I have to write them down.
Bill Gasiamis 22:53
Right to do that in your head, you can’t get to the answer.
Shannon Nelson 22:59
Well, I could. So 27 plus 37 is 64. But I used to do it a lot quicker.
Bill Gasiamis 23:14
Faster than I would have done it.
Shannon Nelson 23:18
Well, yeah.
Bill Gasiamis 23:20
Okay. So there are some numbers just because they’re harder to get to or takes longer to get to. You just prefer to write them down. And then that way, does writing that down also give you any memory issues there? Does it also then give you the memory on the paper?
Shannon Nelson 23:41
No, not really. So yeah, I don’t have any memory issues so I write everything down or I put a reminder in my phone all that sort of thing, but my long term memory wasn’t affected at all.
Bill Gasiamis 24:09
How about people that don’t understand about stroke or don’t know you’ve had a stroke don’t know about your aphasia, and then they come to you to talk to you. Do you often come across people who slow their speech down or think that you’re intellectually impacted by the stroke?
Shannon Nelson 24:31
No. So I’ve worked really hard to get my speech back. So in the beginning, I felt that people thought I was stupid. But now they can’t now. Yeah. And so I did on strike stake ambassador for the strike Foundation, and I was doing a talk last month for a retirement village. And a doctor came up afterwards and he walked in light, because I knew you had a stroke. I could tell. But other lay people can’t. Yeah.
Living With Aphasia

Bill Gasiamis 25:49
Is your aphasia is it worse at some times of the day is better at some times of the day? When is the best time for it?
Shannon Nelson 26:00
At the at the end of the day, particularly if I’ve worked. And when I’m tired, when I’m stressed, when I’m excited, so anytime, but particularly at the end of the day, so I work three days a week now. And, but I work three days in a row by Thursday my aphasia really plays up.
Bill Gasiamis 26:51
Okay, so it even gets worse as the week gets on. Okay, so Monday is your best day, and then by Thursday, we’ll call it at its worst, but it’s when it’s more prevalent?
Shannon Nelson 27:08
Yeah, exactly. But word finding is particularly difficult on Thursday nights. And so it’s fine on Friday, because I’ve had a rest but, particularly on Thursday nights. It’s really bad.
Bill Gasiamis 27:29
Yeah, I’m smiling. But I’m the reason why I’m smiling. Because I relate to that. I don’t have aphasia, or any of those challenges with my speech, although my wife sometimes think I do. And sometimes I do kind of like… and then I kept going again, you know, like, I pause, and then I get going again.
Bill Gasiamis 27:54
And for me, it’s not difficulty finding the words, but it’s just, there has to be like, I have to rest for a little bit in between the previous word. And this word, I don’t know if that’s the best way to describe it. But I know with my other deficits, I’m really good in the morning. And then by middle of the afternoon, or by the end of the day, the deficits are starting to play up.
Bill Gasiamis 28:20
If I’ve missed out on sleep the night before, I’ve had a couple of days of you know, light sleep or not enough sleep, then my deficits on that next third day are really playing up the most. And I noticed that the most, nobody sees them. Still people still don’t see my deficits, but I really feel them.
Bill Gasiamis 28:43
And that’s when they’re on my mind the most. So sometimes, I don’t think about my deficits at all. But sometimes, it’s like, wow, the legs really feeling weird today, or my arms are feeling really weird. Do you have days where the aphasia is on your mind? And you’re overthinking it, or it’s bothering you, and then some days when you don’t?
Shannon Nelson 29:10
Yeah particularly if I haven’t slept the night before, like you and then just I’ll go to work or get up. But I don’t talk much that day.
Bill Gasiamis 29:29
And is that a conscious effort to rest you’re talking part of your brain?
Shannon Nelson 29:36
Yeah, exactly.
Bill Gasiamis 29:40
That’s a pretty good strategy, though, isn’t it because you’re becoming aware of what you need to do to give your brain a rest to give say, the connections or the pathways to your mouth and your brain a rest from being overexerted?
Shannon Nelson 29:58
Yeah, exactly.
Bill Gasiamis 30:02
I like that. And then how do people around you comprehend that? Do they go why isn’t she talking today? Is she sad? Is there something wrong? What do they do?
Shannon Nelson 30:16
Yeah, I had a day like that this week. And they were concerned. And I said, I’m fine. And they said, Oh, will you tell me if something’s wrong? And I said, No, actually, but yeah, I was just tired. And I just couldn’t speak.
Bill Gasiamis 30:44
And would you say it like that? I’m tired. And I can’t speak at the moment.
Shannon Nelson 30:49
Not really. So I didn’t. But yeah, I just said, I’m fine. They said, what’s wrong? And I said, nothing. I’m fine, but yeah, I just got tired.
Asking The Right Questions – Shannon Nelson

Bill Gasiamis 31:07
I know that experience. I think the problem is the question that people ask, because then we default to that standard answer. What’s wrong? Nothing. Because nothing is wrong. Are you okay? Yeah, I’m fine.
Shannon Nelson 31:23
I’ve had a stroke. That’s all that’s wrong with me today.
Bill Gasiamis 31:29
Yeah. Whereas if they asked a better question, like, are you having a tired day today? Or are you having a rest day today? Or whatever the question is, that would allow you to have a better conversation with them about what’s going on?
Shannon Nelson 31:44
Yeah. Exactly.
Bill Gasiamis 31:48
I like that. I like the difference in that part of the question and the answer in the response. It’s, they’re going to, you know, she’s somebody who’s had a stroke, they are remembering that you’ve had a stroke, or they are seeing you behave differently. And they are going, Oh, my God, is it another stroke, what’s happening with her?
Shannon Nelson 32:12
Well, so I went back to work four months, and three weeks after my stroke, I had a graded re-entry to work. And I’d started out five hours a day, three days a week. So I was in nursing allocations at the time. So I was back at work full time, after 10 months. And then I was in an allocation shifts, two days in a row.
Shannon Nelson 32:46
So I work there, Tuesday morning, and then the Wednesday morning. So it’s a lot of speaking on the phone, doing allocations. So you’re ringing up people, to agencies, and bank staff and call staff to tell them their wards or put out bookings. And then buy the next morning, I’ve worked Monday take in my normal job allocations on the Tuesday starting at 5:30.
Shannon Nelson 33:27
And allocations on the Wednesday, starting at 5:30. And by 10am, on the Wednesday morning, I was slurring my words. So I took a phone call from a nurse unit manager. And she said, are you okay? Because I was slurring my words, obviously. And I said, yeah just really fatigued. And she goes, what’s wrong? And I said, you know, I had a stroke 10 months ago, or a year ago, it was 10 months. And she said, No, I thought you were having another one. She was going to ring triple zero.
Bill Gasiamis 34:29
Yeah, and that’s a lovely thought.
Shannon Nelson 34:30
Because I was slurring my words that much.
Bill Gasiamis 34:33
Yeah, that’s a lovely thought, because at least she knows the signs. And she’s checking in with you. And she’s getting a response. And then thankfully, you were able to say, oh, that you were tired. And that would have made her feel better about your situation. It sounds like Shannon maybe what’s a great idea would be is to have like a sign that you put on your computer monitor at work saying today I’m resting my brain or my voice or I’m tired or I haven’t slept for three days just so then you can give people a bit of feedback or updates.
Shannon Nelson 35:13
Yeah, I’ll take that on board.
Bill Gasiamis 35:17
Yeah. And it’s an anxiety that people also have I often talk about with stroke survivors, that their anxiety about having another stroke. But then your colleagues and your loved ones are also potentially having anxiety over the fact that you might be experiencing another one.
Shannon Nelson 35:36
Yeah, but I have the PFO closed before I went back to work. So before I had the PFO closed, I was anxious about having another stroke because I think a clot broke off, traveled across the hole in my heart and quicked up to my brain.
Bill Gasiamis 36:11
After the PFO was closed, how did you notice a difference in your body, in yourself, in your heart, in any way? Did you know like before and after version of you?
Shannon Nelson 36:25
No, I had no idea I had the hole in my heart. And I had surgeries before I had , three surgeries prior I gave birth to two children. And they didn’t pick it up.
Bill Gasiamis 36:50
Yeah, maybe they’re not looking for it. And therefore it doesn’t really come up if you’re not looking for it or something like that.
Shannon Nelson 36:56
The surgeon, the cardiologist who closed my hole in the heart said it’s not the biggest hole I’ve plugged.
Bill Gasiamis 37:12
One of those things. How old was your son at the time?
Shannon Nelson 37:18
17 and my daughter was 16. Shawn was doing BCA at the time.
Bill Gasiamis 37:30
Was he doing the last year of school or?
Shannon Nelson 37:32
Yeah, last year.
Bill Gasiamis 37:35
And your daughter would have been in year 10? Again, yeah, yeah. Okay. How did they cope with it? Or how did they deal with knowing the man was unwell and heading to hospital, etc.
Shannon Nelson 37:49
So Gemma woke up Shawn at seven o’clock. And she’d heard from Stuart, that I’d had a stroke. So Gemma, she woke up Shawn at seven o’clock. And she told Shawn that mums had a stroke. And they went off to school, like normal.
Bill Gasiamis 38:31
Is that because they had no idea what a stroke was?
Shannon Nelson 38:34
Stuart told them to go off to school and act as though it was a normal day.
Bill Gasiamis 38:43
Is that a good move? Did he do the right thing? Or was he in trouble for that?
Shannon Nelson 38:47
I think so.
Bill Gasiamis 38:48
Okay, good. I think that’s the best move.
Shannon Nelson 38:51
Yeah, and they went to school all through my recovery. And so Shawn went to work. Gemma went to work. So they just behaved as though was normal.
Bill Gasiamis 39:16
Okay. Yeah. I like the idea of that because therefore that means that they are going about life as normal. They are probably still concerned, but they’re not being anxious that haven’t got a lot of time to overthink things. And they just dealing with what’s coming as necessary, rather than trying to solve all the problems that might come up going forward that may never come up right?
Therapy After A Stroke
Shannon Nelson 39:52
So I got a mental health plan from my GP About two months afterwards.
Bill Gasiamis 40:03
That’s like seeing a psychologist, right?
Shannon Nelson 40:05
Yeah. So I felt I wasn’t coping cuz I couldn’t say the word monotony I never used it anyway.
Bill Gasiamis 40:19
Say it again?
Shannon Nelson 40:22
Monotony and can’t say it anymore, so I had a meltdown. And so I threw books and that sort of thing cried. And then I went off to get a mental health plan from my GP. So I had three visits by myself, one with Stuart and one family therapy session. And that was, I think that was good.
Bill Gasiamis 41:10
I did something similar after my first episode with a brain hemorrhage I went, I think it was maybe in less than 10 days after I was in hospital. Because the first time I was in for a week, and then released, I was in therapy with my wife. And then after that, I think I went a few times with my kids, etc.
Bill Gasiamis 41:32
But I’ve been going to therapy for since I was 25. Anyway, so it’s not, it wasn’t anything new to me, but it was something that I just did. What about you, though? Was that enough? Therapy? mental health therapy sessions? Do you feel like more would have been better? What were you with that?
Shannon Nelson 41:55
So I joined a sleep and fatigue study in 2019. And I got near a psych therapy through the sleep and fatigue sub. And I continue to see my neuro psych after that. And then I also see the neuro psych once a month or once every six week through NDIS, I have been seeing neuropsych.
Bill Gasiamis 42:40
Yeah, so it sounds like he did put a fair bit of work into making sure that certain things were okay that you were managing and you’re coping with everything. Why did the word monotony? Why was that the word that was the one that sent you over the edge?
Shannon Nelson 43:05
It was. So I was doing word lists. And that’s the word that I struggled with. And that’s the straw that breaks the camel’s back as they say.
Bill Gasiamis 43:25
Everyone has their limits. And yours was monotony.
Shannon Nelson 43:31
Or is it a monotonous task I was doing at the time.
Bill Gasiamis 43:44
Understand. What’s something that has been placed on hold because of your stroke? Or was placed on hold that you’re doing now? Was it interfering with stuff that you were in the middle of doing that it stopped you from doing?
Shannon Nelson 44:06
No, not really. I’ve been overseas since my stroke. So I was an avid walker before my stroke, so five months after my stroke, I walked the five K’s in the Melbourne Marathon with my family and raise money for the Stroke Foundation. And then we decided to do the Melbourne Marathon in 2019 as well. So 10 weeks before I signed up for the 10K, and 10 weeks beforehand.
Shannon Nelson 45:10
I wasn’t a runner before my strok. And I ran the 10K in the Melbourne Marathon with my family. Shawn and Gemma, my children walked and Stuart my husband ran. And then I decided because of COVID I decided that I was going to do the toughest half marathon in 2020 by COVID heat. So, hopefully I’ll do like, this year, I’ll walk and run in Tasmania the Point of Pinnacle. So yeah, that’s the only thing but that’s because of COVID.
Bill Gasiamis 46:12
Is the stroke anniversary? Is it something that you celebrate? Or is it something that you prefer not to mark?
Aphasia And Alcohol – Shannon Nelson

Shannon Nelson 46:21
The first year I celebrated I didn’t drink for a year to allow my brain to heal. So I celebrated with my friends and my family. And I bought a bottle of Cristal champagne and drank that all day.
Shannon Nelson 46:23
That make the aphasia better or worse?
Shannon Nelson 46:51
Ah I think better actually. Drinking helps with aphasia.
Bill Gasiamis 47:06
It helps you with your aphasia is that because you’re not overthinking it or something?
Shannon Nelson 47:13
Yes exactly.
Bill Gasiamis 47:16
So drinking helps me play pool. You know, the billiards or pool. Because when I’m sober, and I haven’t played for many, many years, but when I’m sober and not playing and playing pool. I’m overthinking where I should put the stick. And where I should hit the ball and how much power I should use. So I’m thinking about that process.
Bill Gasiamis 47:41
And then when I’ve had a couple of drinks, I don’t think about it. I just do it on instinct, or more on knowing what I know about pool because I’ve played it for so many years. Never as a professional just with my friends in that. So I’m far better after a few drinks than I am when I have to be completely totally unaffected by alcohol.
Shannon Nelson 48:09
I’m better after two champagnes, but when it gets to 4, no good. I’m slurring my words. I drink it all day.
Bill Gasiamis 48:27
I wonder if anyone else out there who’s had aphasia or has aphasia gets better after they have a couple of drinks. If anyone’s listening and you have experienced something similar, just leave a comment in the comment section wherever you hear this podcast or watch this podcast let me know on Instagram. Anyway your life let me know. What’s something that stroke has taught you has taught you about life about yourself. What has it taught you?
Shannon Nelson 48:57
I don’t sweat the small stuff anymore. So yeah, I’m more relaxed. It’s taught me to be patient with me, and also my family and friends. And I don’t sweat the small stuff anymore. So I go into Shawn’s room, which is at absolute peak sigh. Just my mother visits Shawn when she comes down so they live in rural New South Wales. And my mother said to Shawn, clean up your room. He’s healthy, he’s not doing any harm by I just shut the door.
Shannon Nelson 49:46
You shut the door knowing what’s behind there. Yeah. And now you can just walk past it. And you don’t have to open the door.
Shannon Nelson 50:15
Yeah, exactly.
Bill Gasiamis 50:18
Yeah. Okay, I can relate to that.
Shannon Nelson 50:21
Yeah, I value my family and friends more.
Bill Gasiamis 50:31
Yeah, I can relate to that whole, shut the door and not look into the room. But sometimes when I have to go into the room to speak to my son, then my eyes they go to where all the rubbish in the junk and the clothes are. And I’m trying not to say anything about it. I’m really, really trying not to say anything about it, and have a conversation with them about why I walked in the room. But sometimes I can’t resist. After the conversation, I have to say something like, clean your room, clean your room. And then I’ll walk out.
Shannon Nelson 51:08
I say, every month or so, please clean your room, please just vacuum. And then he puts the washing out. So he’s 22 now.
Bill Gasiamis 51:26
Yeah, I think as long as you and he have the mum and son relationship inside your home, it’s really hard to shift the the dynamics of that I noticed that with my oldest son who moved out about a year ago, about a year ago. Now conversation when he’s at home. And living in the house was the usual conversation that we had for all the 25 years that he was at home.
Bill Gasiamis 52:00
And now that he’s moved out, the conversation has changed, it is different. And the dynamic has changed. So there’s no more me being the dad, asking him to do things in the house that he should be doing in his own place. He handles all of that stuff he does anyway. And I don’t need to go into his house and say Your house is a pigsty, for example, any of that stuff.
Bill Gasiamis 52:31
He’s an adult, and he acts like an adult because he isn’t in that environment where there is somebody who is kind of in the hierarchy of the home is above him in the hierarchy. Whereas now we’re equals because he’s a homemaker, and I’m a homemaker and now we’re equal.
Bill Gasiamis 52:57
And I think that’s what I learned. I appreciate that you would look forward to that. That’s what I discovered when he moved out, which was a really, because even though he was 25 I didn’t want him to move out. Right? Yeah, I wanted him to stay at home forever. But the the part of me that wanted to kick him out was glad that he left. And now that’s what I’ve learned from it.
Bill Gasiamis 53:24
I’ve learned that the dynamic has shifted. And our relationship has taken a different level and we don’t interact like although he’s my son and we don’t interact like father son in the hierarchy. We act like Father Son equals it’s a good experience. And your daughter what about your daughter? What is she like? Is she very different to Shawn?
Shannon Nelson 53:53
Yes. So Sean’s more laid back. Gemma. Gemma’s, Gemma. So she is finding her way I’d say. So she’s 20 now. So yeah, she got into uni last year, but she dropped out. After seven weeks. It wasn’t for her because she did online learning in for the last year of her schooling, and it was all online learning at the start of last year. So she’s working.
Recovery During Pandemic

Bill Gasiamis 54:51
Was COVID a difficult time to do stroke recovery in? Because for the first two years you were doing stroke recovery. Normally, and then COVID, shut everything down, did you miss out on accessing services and the things you needed?
Shannon Nelson 55:07
So I didn’t have traditional therapy for 18 months. So when I went back to work I, so I was in community rehab. So I did so. So I was in hospital for three and a half weeks and then discharge to ESD, early supported discharge program for stroke patient, which ran for four weeks. So I was doing OT and speech one hour a day, Monday to Friday for four weeks.
Shannon Nelson 55:54
And then I think the doctor and the nurse, both center and home based, then I was transferred to community rehab. And I did two sessions of speech a week, one telehealth and one sentence base. And then I do an OT session a week and group a week so once a week. So I was discharged from speech just after I returned to work. And then I was discharged from OT at the end of the year. So I worked on my own speech therapy and OT by myself, and then my OT at the community rehab encouraged me to apply for the NDIS.
Bill Gasiamis 57:22
And so did you do any zoom therapy?
Shannon Nelson 57:26
So yeah. So at the beginning, I was denied, so I didn’t have any traditional therapy in 2019. And then I was accepted in to the NDIS.
Bill Gasiamis 57:26
That’s the National Disability Insurance Scheme, right?
Shannon Nelson 57:51
Yeah. And then I had one session in person and then lockdown hit.
Bill Gasiamis 58:06
Locked down. Did that move to online?
Shannon Nelson 58:09
So I did one zoom session. Oh, one zoom session, a fortnight speech. And mind your site went on to ZOOM. But my OT because I use machines for my OT I had clinic sessions once a week.
Bill Gasiamis 58:37
Did you enjoy the online version of therapy compared to the regular version?
Shannon Nelson 58:44
Well, no difference. Yeah. Yeah.
Bill Gasiamis 58:50
Yeah. I know. My son was also finishing had also finished school just before locked down in 2019. So then his spent, but he finished in 2018. He took a year off and then his spent 2019 Just chilling out and doing the work. And then he really didn’t enjoy trying to do anything for the two years that we were in lockdown in Melbourne, and get some stuff going.
Bill Gasiamis 59:27
So he’s kind of he seems like he’s a little bit been impacted or delayed by the lock downs in the things that he wanted to do. And I know for other children that were still at school, they really didn’t enjoy the online version of schooling and I know a lot of stroke survivors didn’t enjoy the online version of their therapy and felt like they missed out on a lot.
Shannon Nelson 59:54
I think because I had done my stroke in 2018. And then I went without therapy for 12 months. I was just so thankful to get therapy again.
A Night For Aphasia
Bill Gasiamis 1:00:22
It’s been an interesting journey. I met you at the Night For Aphasia. That was being held in Melbourne quite some few weeks ago now. And facia is an annual event run by another guest that has been on this podcast. Olivia O’Hare. Yeah, yeah. And that was a really cool event. She’s a speech therapist, and she has an organization that helps people from all backgrounds with this speech.
Bill Gasiamis 1:00:57
You spoken presented at that event. That was pretty cool you did really well, in front of a group of people speaking about the challenges, and it was late at night. And you were drinking a couple of champagnes. But you got through it really? Well. And you’re going, you’ve sort of taken the this thing, and you’re turning it into a bit of a passion project where you want to raise awareness about aphasia, and all those things,
Shannon Nelson 1:01:36
About strokes. So it can happen to anyone, every anytime, anywhere, any age. I’m a nurse, so and I only treated elderly people who had a stroke. So I’ve worked in the rehab settings. So I didn’t know that strokes can, well I did, but I wasn’t aware of how many strokes happened to young people 25% of working age, people have strokes. So yeah. I wasn’t aware.
Bill Gasiamis 1:02:27
So you were a nurse. And you had been in situations where you were helping people that had experienced stroke, etc. Wow. Okay. So when you went back to work, did you go back to work as a nurse?
Shannon Nelson 1:02:41
No, I was working in nursing administration. So then I left my job last year, and then I work in an OT practice three days a week now and I do one clinical nursing shift a fortnight now for an agency.
Bill Gasiamis 1:03:14
So you work in occupational therapy practice now in what capacity?
Shannon Nelson 1:03:20
Admin.
Bill Gasiamis 1:03:21
Yeah, fantastic. If anyone’s going to understand what you’re going through, or the challenges that you face, it’s going to be an occupational therapy organization.
Shannon Nelson 1:03:35
I went there as a patient. And then I continue to do therapy once a week there.
Bill Gasiamis 1:03:54
And then you decided to work there as well.
Shannon Nelson 1:03:57
Yeah. Well, they offered me a job.
Bill Gasiamis 1:04:02
Fantastic. I love that. Well, I really appreciate all the things that you’re doing to raise awareness. Thank you so much for being on the podcast, and well done on all the stuff that you’re doing to raise awareness about stroke and aphasia, and thank you so much.
Shannon Nelson 1:04:24
Thanks for having me.
Bill Gasiamis 1:04:26
Well, thanks so much for joining us on today’s episode. I hope you enjoyed it. To learn more about my guests, including links and to download a full transcript of the entire episode. Please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:04:52
And if you’re watching on YouTube, comment below the video, like the episode and to get notifications on future episodes, subscribe to the show on the platform of your choice. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier, and that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:05:27
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:05:44
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Intro 1:06:01
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Intro 1:06:22
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Intro 1:06:36
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Intro 1:06:49
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The post Living With Aphasia After Stroke – Shannon Nelson appeared first on Recovery After Stroke.
1 hr 8 min
July 25, 2022 Finding Yourself After Stroke – Letisha Living
Letisha Living was a 35-year-old mum of three when she woke in the middle of the night as a result of the symptoms of an ischemic stroke.
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Highlights:
01:25 Introduction
05:14 The Cause Of The Stroke
09:16 Patent Foramen Ovale (PFO)
14:13 Post-Stroke Deficits
21:41 Pregnancy After The Stroke
35:29 Family Support
39:15 Finding Yourself After Stroke
47:57 Spreading Awareness
54:25 Buy The Book: Finding Yourself After Stroke
Transcription:
Bill Gasiamis 0:00
How was pregnancy different after the stroke compared to the first three times when you were stroke free?
Letisha Living 0:06
I was told that I would probably need to terminate because it was too high that was saying was too high risk to go through with it. So I needed a cardiologist, an endocrinologist neurologist, all talking with the Guinee OB as to whether this is was going to be something that could happen. So they had lots of meetings, I went to a few meetings and I got the all-clear at about 13 weeks God that time they were saying this might not be something that that will happen. So 13 weeks, I’ve got the Okay, and then I had to be monitored every week and delivered by cesarean.
Intro 0:56
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:09
Hello, and welcome to episode 204 of the recovery after stroke podcast. If you’re a stroke survivor with a story to share about your experience with stroke, and you have been thinking about reaching out to be a guest on the show, but were waiting for the right time? This is it.
Introduction

Bill Gasiamis 1:25
If you go to recoveryafterstroke.com/contact you’ll find a form that you can fill out to apply and be a guest on the show. As soon as I receive your request, I will respond with more details on how you can choose time that works for you. And for me to meet over zoom. Now, my guest today is Letisha Living, who had a stroke at age 35. And two months after the stroke, she found out that she was pregnant with her fourth child. Letisha recently launched a new book called Finding Yourself After Stroke, Letisha Living welcome to the podcast.
Letisha Living 2:06
Hi, Bill. Thanks for having me.
Bill Gasiamis 2:08
My pleasure. Thanks for being here. Tell us a little bit about what happened to you.
Letisha Living 2:12
10 years ago, while I was sleeping, I had a stroke. Yes, it woke me up. Totally unexpected. But as a long-term migraine sufferer, I thought I was having a very bad migraine. So I never thought for one second that I was having a stroke. And I had my four-year-old lying in bed with me.
Letisha Living 2:40
So I became more concerned about him and not wanting to wake him up than what was going on with me. So I tried to get up because I thought well, I’ve got this extreme head pain. And I knew that I could walk I had pins and needles on one side.
Letisha Living 2:58
And so I feel like it’s a migraine, it’ll pass. And I waited until morning. And then I realized, oh, there’s something seriously wrong with my vision. So I couldn’t see out of the right side at all. And I still had the pins and needles. So again, not even thinking for one second that I had a stroke.
Letisha Living 3:26
So I went to the medical center, and they thought it may have been a reaction to the contraceptive implant. And so they removed that and gave me some painkillers then go home and rest. Again, just thinking it was a migraine. And next day, no better still had pins and needles head was still pounding vision hadn’t returned. And then so I went to a different medical center still not thinking for one second that I was having a stroke. And that’s when I said I gotta go straight to emergency.
Bill Gasiamis 4:07
So with the migraines did you ever get pins and needles as a symptom of migraines? Was that ever connected?
Letisha Living 4:17
No so I thought it was a migraine because of the extremity of the extreme headache that I was having. And so I thought to myself, Oh, maybe all the migraines that I’ve had before weren’t migraines, and this is the real one but I didn’t have visual disturbances so that’s what I thought was happening but it was just different.
Bill Gasiamis 4:45
How many hours elapsed from when it woke you to when you finally got to hospital?
Letisha Living 4:52
Four days. I had a stroke on Thursday night, and I was in emergency on Monday.
Bill Gasiamis 5:06
So it was an ischemic stroke?
Letisha Living 5:08
It was.
Bill Gasiamis 5:09
Is there an underlying cause now? Do they know what caused it?
The Cause Of Letisha Living’s Stroke
Letisha Living 5:12
Yeah. So when they realized that I had a stroke, and I had a CT scan, and then I had an MRI and that’s when they found it. Tuesday, they did some investigation. So they the toe or I think was the transesophageal echocardiogram. And during that they found a hole in my heart.
Letisha Living 5:42
And so that combined with being on contraception, and at the time, I smoked, gave up right there and then having stress in my life, and being a migraine sufferer. It was like the perfect storm. It wasn’t like, would this ever happen? It was when, when would this happen?
Bill Gasiamis 6:01
Yeah, I know about that perfect storm situations kind of described the situation that led to the bleed in my brain. Although it was a congenital defect in my head, and a faulty blood vessel. I still did a lot of things that didn’t make the situation better. What kind of stress were you under at that time?
Letisha Living 6:28
Post-relationship stress, work stress. I was in quite a stressful work environment. My job description meant I had to be on call 24/7. I didn’t relax. I was just on the go all of the time. I wasn’t making healthy lifestyle choices wasn’t eating properly. I was smoking, drinking too much just not taking care of myself.
Bill Gasiamis 7:01
Were you on call 24 hours a day, seven days a week? And were you the only person that could do that role? How come you found yourself sort of stuck in that situation?
Letisha Living 7:10
I was in a senior management position for an aged care provider. So overseeing all of the management for that facility. So if something happens in the middle of the night, one of the residents, so the fire alarms went off or something happened. I was the person that was notified.
Bill Gasiamis 7:31
Yeah. But did that happen? Often?
Letisha Living 7:36
Yeah, my phone was on 24/7. And I will get calls.
Bill Gasiamis 7:44
And as a mum of a four-year-old, did you have support there for your four-year-old? I know you mentioned that you had post-relationship challenges there. So it sounds like you were a single mum at the time? How did you manage that whole come and sort something out at the aged care facility at like the early hours of the morning?
Letisha Living 8:10
Yeah, so most of all, we had staff on 24 hours, so but they would need to inform me or if they needed direction, they’d have to call me so I didn’t have to go in at night. But if I did have to go in my four-year-old could come with me.
Letisha Living 8:27
And I was a single mom. But I had just recently started seeing somebody after I had come out of the end of this relationship. Then got pregnant about two months after my stroke. So the contraceptive implant didn’t work.
Letisha Living 8:47
And yeah, life just took a totally different direction. But I call it my stroke of luck, because I couldn’t have kept going down that road for long. So and, but it was hard, because it’s very tied to my job and all that that was my identity. So and I didn’t know how to stop because I’d been on the go for so long. My stroke said, Yep, no, you’ve got to stop now.
Letisha Living Had A Patent Foramen Ovale (PFO)

Bill Gasiamis 9:16
Yeah, certainly did do that. And it also revealed other underlying conditions that often people who have a Patent Foramen Ovale or PFO in their heart, don’t know about it. And then in order to, well, not in order to work it out, but they work it out after they’ve had a stroke.
Bill Gasiamis 9:29
And usually that comes with sometimes it comes with brain surgery or complications from stroke, and then they’re dealing with all that stuff. And then they have to have heart surgery. Did you end up having heart surgery as well?
Letisha Living 9:52
I had my heart surgery nine years after my stroke. So I had my stroke they found the PFO, and at that time 10 years ago now, it was still relatively new as to what they would do for post-stroke with a PFO, like they know now, because it’s been 10 years worth of history, they know if you’ve had a stroke and PFO will close it.
Letisha Living 10:20
But back then they weren’t doing that. They were seeing it a little bit too high risk. So yeah, nine years it took for me to get mine done. And, and I’m telling you now I’ve had a lot of anxiety, I’ve had a lot of anxiety in these nine years because I kept thinking, am I going to have another stroke? Would I survive another stroke? Could this happen again at any time?
Bill Gasiamis 10:49
Were they taking any preventative action to stop more clots from forming? Were you on warfarin, for example?
Letisha Living 10:58
I wasn’t on warfarin, I was on aspirin, I still take aspirin. And then in the lead up to the closure part and post surgery I was on. I think it’s called that might not be the right name, I was on some getting medication a little while.
Bill Gasiamis 11:18
Yeah. Which is similar to warfarin, it thins the blood supposed to stop potential formation of other clots. So how did you recover from that? heart surgery? Was that something that you got back to life quickly after? Or did it take a little bit of time, how’s that going?
Letisha Living 11:43
It was, daunting in the lead up, because they go in via your femoral artery with a cardiac catheter that goes up into your heart. And that for me, it just seems so scary. So I just had this massive fear that I was going and prior to even having my stroke, I just always had this vision, this fear that I will die on the theater table.
Letisha Living 12:10
And then the day of it, they put two holes into my femoral and they got it on the third time. I didn’t know this until I read my notes afterwards. I was like, My worst fear actually did come true. But still here. But afterwards, it was quite easy. I mean, they went in they they put the device in, and then your tissue grows over it.
Letisha Living 12:37
I haven’t had any complications. Every now and then I do feel like a little bit of racy heart. But apart from that, and everything’s fine. But I just have to carry a card with me at all time now at all times now and let people know if I need to have an MRI or something. I can only go into special machines or I think I might be good airports. I’m not sure yet. but yeah I carry a card now.
Bill Gasiamis 13:05
Okay, so the procedure, although it’s invasive, there’s not a lot of like trauma to the chest cavity or anything like that to enter and find the heart. They do it all from the inside of the artery.
Letisha Living 13:21
Yeah.
Bill Gasiamis 13:24
Yeah, that means recovery is quite quick?
Letisha Living 13:33
Yeah. I went home the next day.
Bill Gasiamis 13:36
And then where you just supposed to be taking it easy for a few days? What’s the procedure after that?
Letisha Living 13:45
So I spent 24 hours in ICA. And then they just said, Yeah, take it easy. Four to six weeks, you probably won’t even notice that if anything happens, just return for emergency and we’ll see you there. Yeah, it’s been a year now. So it’s been in for a year. And apart from a couple of slightly racy bits. Everything’s been fine.
Post-Stroke Deficits
Bill Gasiamis 14:13
So what did the stroke leave you with? What kind of deficits did you have to deal with?
Letisha Living 14:19
I, the vision never returned. So when I at the time, I thought I was having a migraine I was having the, or the visual disturbance that’s never returned. So I’ve got what they call, right-sided hum. Not even sure if I’m saying this correctly, homogenous hanging OPR or human OCR. So that’s the full visual field deficit loss on both sides of my eyes on the right sides. Okay.
Bill Gasiamis 14:54
And then was there any other physical deficits that you had to overcome walking or rehabilitation on Have any sought to get your limbs working again.
Letisha Living 15:05
So I was so fortunate that the pins and needles didn’t stop. And I didn’t walk for a few days, and then I could return to walking. But my right hand, I still have weakness in that. When I’m tired, I’ll drop things, sometimes I forget that I can’t completely grasp, like I used to do, I still have some spasticity in my hand. But apart from that, everything’s fine. And you probably wouldn’t have notice unless I mentioned it.
Bill Gasiamis 15:36
Is that a good thing that people don’t notice, can’t tell that you’ve had a stroke, or is it a bit of a challenge?
Letisha Living 15:45
It’s pros and cons, because nobody knows unless I tell them. But then in the same time, it’s like, I do have this visual loss. And I sort of have a lot of pride too. So I won’t walk around with a cane, and a guide dog and a badge that says, hey, I’m blind.
Letisha Living 16:05
So when I go out into the, you know, the busy shopping centers and things, people don’t know that I can’t see them. So they will walk straight into me. And I don’t know that they’re there. And they could be thinking, Oh, who’s this rude person and just walking straight into me, I’m not getting out of the way. Apart from that. The perception, like I after my stroke, I went for a walk/run and realized I couldn’t do that.
Letisha Living 16:34
And I fell and hurt my ankle and knee badly. So I couldn’t return to netball, or those sort of contact sports, because I can’t see things coming at me. So that’s probably the biggest thing, and I never got my driver’s license back. So I just believe that independence, and that was a massive thing that took me quite a few years to accept that I probably won’t be able to drive again.
Bill Gasiamis 17:03
As the use of vehicles like Uber or taxis or any of that kind of stuff make that loss of independence better, or is it not the same? Does it not really cut it when it comes to being completely and totally free to travel wherever you want.
Letisha Living 17:22
I’m used to it now so I use Uber. And I’m so grateful for Uber, it’s great, and it’s a lot cheaper than taxis. But it’s still is challenging, because I have to plan everything ahead and rely on other people I love. And I think we all do love that you can’t wait to get out driver’s license and be an independent person. Now you just want to make those decisions and even snap decisions like, Okay, let’s go here now, or what do you want to do? Or let’s stop here on the way home? That doesn’t really happen for me. But I have adapted.
Bill Gasiamis 18:03
Yeah, and you’ve probably got friends who pick you up and take you places and all of that kind of stuff.
Letisha Living 18:11
I’m so lucky to have that.
Bill Gasiamis 18:12
Yeah, I know how frustrating it was for me when I wasn’t able to drive for a few months. I think it was probably all up maybe, you know, eight or nine months where I wasn’t allowed to drive or able to. And I had my dad and different people picking me up and the rest of it. And it was really nice for them to do so. But it wasn’t the same. It was still really felt like I was inconvenience everybody.
Bill Gasiamis 18:40
I was in a way, but they were happy to do it. And then I felt like I just couldn’t do things on a whim where I would have beforehand, I had to plan ahead and find a way to get from A to B. And then maybe in my mind, it felt like it took longer to get to places where maybe didn’t you know, with traffic in in a city like Melbourne public transport is not that much slower.
Bill Gasiamis 19:09
Just this perception that it’s not as convenient as a car. But also there are some places in Melbourne where public transport doesn’t get to. So then that really is inconvenient. And you do have to find another way to get there.
Bill Gasiamis 19:28
A lot of people work towards getting their driver’s license back after shake is one of the big things that they want to get back. And I can see why it changes the way that you’re able to move around and the things that you’re able to access whether they are medical services or or entertainment or any of those things. It just changes the way that you get to access those places.
Letisha Living 19:57
Yeah, it was difficult I mean one minute, I’m dragging my kids to and from school and their sporting commitments, and then the next, I can’t leave the house without relying on somebody else.
Bill Gasiamis 20:12
And you’ve discovered a couple of months after your strike that you’re pregnant. And then you had to go through pregnancy for the second time, you know what pregnancy is like, because you’ve been through before, or was it the fourth time. So you’ve got to go through pregnancy, the fourth time. So you’ve had these other three pregnancies, you know exactly what they like, stroke free.
Intro 20:38
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 21:08
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, 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 21:38
How was pregnancy different after the stroke compared to the first three times when you were stroke free.
Pregnancy After The Stroke
Letisha Living 21:47
It was a shock the same? Definitely wasn’t expecting it. And I was told that I would probably need to terminate because it was too high they were saying it was too high risk to go through with it. So I needed cardiologist endocrinologist neurologist, all talking with the GyneOB as to whether this was going to be something that could happen.
Letisha Living 22:23
So they had lots of meetings, I went to a few meetings, and I got the all clear at about 13 weeks. Yeah, but for that time, they were saying this might not be something that will happen. And so 13 weeks, I’ve got the Okay, and then I had to be monitored every week and deliver by cesarean.
Bill Gasiamis 22:50
Yeah. Was that a massive interruption in your life being required well, for your health reasons, right, obviously, for the right reasons, but being required to bid hospital weekly and going for weekly checkups. Amongst other things, I imagine you’re still also doing stroke recovery. But now you’re going in for this other checkup for how does it impact your daily life and the things that you can and can’t get done? Especially when it comes to healing and recovery from stroke?
Letisha Living 23:21
Yeah, it was huge. And I have to say that it kind of saved me because it gave me something different to focus on. Because I was too busy focused on everything that I’ve lost. I’ve lost my job, I’d lost my vision, I’ve lost my identity, I’ve lost everything. And so he gave me a new purpose and a new direction.
Bill Gasiamis 23:51
Well, kids will do that. Sounds like he came along at just the right time. Because kids don’t really care if you’ve had a stroke or not, they just need you to care for them be the mom do all those things. And I know that a lot of stroke survivors have had kids will complain about the difficulty of raising the child while they won’t complain, they’ll express the difficulty of raising the child while also trying to recover from stroke.
Bill Gasiamis 24:24
But also, there’s the underlying benefit that they get from having a kid at the same time or around about the same time because it does require you to make the most of your opportunities to recover and do all the things that you need to do. And there is a positive element to that for some people, although it can be draining and a lot harder to recover from stroke.
Bill Gasiamis 24:51
I haven’t come across too many people who think that while they obviously would have preferred things to be differently with a stroke, etc. But they wouldn’t have really gone out of their way to change things as far as finding out that they’re pregnant just after a stroke, or they had this young baby to come to after they had a stroke, and motivated people to get well and get out of hospital and overcome their challenges to be home for that child. So it’s a real interesting conundrum and blessing and all these weird emotions and things all wrapped up in the one little bundle that is born and is relying on you, for the majority of its ability to be alive and support and the rest of it.
Letisha Living 25:51
And that’s why he saved me, because I got so depressed afterwards. And he just gave me the new focus. And I knew that I needed to get better. Like, my recovery was mostly mental, emotional, more than the physical having to learn how to walk and talk, and things like that I had to overcome the mental-emotional challenges.
Letisha Living 26:21
And so he gave me that I’d like to stay home, I’d like to be a stay-at-home mom. Prior to that I was a working mom. So my kids actually got to see me, I got to see them. We got to spend time together. Yeah. So I actually got to be the man that I actually always wanted to be. But never was I did change things. But I did have that guilt. I mean, I, I still had the weakness in my right hand.
Letisha Living 26:48
So I couldn’t exactly I couldn’t see. So we would have to sit down and roll the ball to each other. And I’d be rolling it with one hand instead of throwing and catching it because I couldn’t see or catch. So but we just adapted and did things differently. And like you said, they don’t know. Kids just love you for you. You know, I was my own harshest critic, but he didn’t know any of my flaws or anything. So yeah, it’s been good learning.
Letisha Living 27:04
Does he use it against you? Have you told him that he was your savior? And does he use it against you now?
Letisha Living 27:29
No, he doesn’t use it against me.
Bill Gasiamis 27:34
I would use it against my parents, if they said I was their Savior, I’d be going well, you know, I deserve something back now. Like you need to give me more pocket money or you need to be easier on me.
Letisha Living 27:48
Let’s not give him any ideas.
Bill Gasiamis 27:51
All right. Fair enough. So with regards to your emotional and psychological recovery, were you aware that you needed to focus in that area? And did you get support? Was there support available? And did you take up that support?
Letisha Living 28:13
Not at first, I was too in my hand. And very. I think I felt very ashamed around everything that happened to me. So I didn’t want to talk about stroke, I was ashamed of being a young stroke survivor, I was ashamed of having disabilities that I had. And so that was very embarrassing. I did try some counseling for a little while. And it just wasn’t working for me.
Letisha Living 28:40
But that was because I wasn’t open to it. It wasn’t until I had the acceptance of my own stroke and what had happened and that, that healing could begin for me. I could go on and study NLP and other things. I got to learn about my own mindset, my own programming, my limiting beliefs and things like that. And it just, it took me more than anything else to accept me for who I am.
Bill Gasiamis 29:17
Yeah, that’s important. Acceptance is important. And it’s a really good place to start from. And if you don’t get to acceptance, maybe you’re starting your recovery in a different place. And maybe it’s not leading to the outcome that you’re after to feel better about yourself and to get through all the challenges that are to come.
Bill Gasiamis 29:39
I definitely also started that journey of self-reflection, and personal development and all that type of thing after the stroke. I had my stroke in 2012 Also, I was 37 at the time and I had never really done any personal development work. Although I had been to counseling quite a lot. And I appreciated the ability to go to counseling and talk through challenges, problems and all the other stuff that was bugging me.
Bill Gasiamis 30:09
But I never went there with the idea that what I would also do is make some changes personal changes myself about the things that I disliked. And that’s what was different about recovery after the stroke it was that I not only did all the stuff I was doing refered before going to counseling and doing all those types of things.
Bill Gasiamis 30:33
I also took responsibility to change some of the stuff that I was contributing to the problems that I was having, which I wasn’t aware of. Before, I had no awareness that I was also responsible for some of the stuff that I was experiencing that I didn’t like. So that was a huge help.
Letisha Living 30:56
Yes, sometimes we don’t realize how we are actually contributing to our own outcomes.
Bill Gasiamis 31:03
At the beginning of that transformational journey for you, did you appreciate when somebody says to you hey, Leticia, you know that you’re probably the one that’s in your way, they may not have said it like that. But I remember at counseling, my psychologist said that to me, she said, you know, you’ve been going on and on about all these other people causing all these problems.
Bill Gasiamis 31:28
And then she said to me one day is there a chance that it’s you. And of course, I swore at her. I got up and stormed out, we had a great relationship. So it was all within context. And it was okay, you know, for me to respond that way and she knew that I wasn’t attacking her or being quite personally aggressive, or rude or anything, but But it took a while for it to sink in that I was the guy. And I didn’t like other people telling me that I was. So how did you cope with that? Or did you accept that? Or was that okay?
Letisha Living 32:17
It took me some time. I mean, for me, it was really, I was running on people pleasing, and things like that. So it was, why aren’t my relationships the way I feel I deserve them to me. And it’s because of, I’m not putting out strong, healthy boundaries, I’m not respecting myself by saying, This is what I need, or this is what I don’t want, or this is what I expect from you.
Letisha Living 32:45
And so I had to go from doormat to respecting myself first. And unfortunately, that meant pretty well, most of the people in my life disappeared. But now, my relationships are genuine, I can trust the people that I’m with. We can respect each other, I know that they respect me, they don’t see me as a doormat or someone to take advantage of.
Letisha Living 33:13
And, yeah, it’s better when you’ve got people, when you’ve got genuine relationships. And you can see, you know, how you, like you said, how you contribute to these outcomes yourself. But I wasn’t aware of that prior, I had to sort of figure it out by having lots of challenging moments.
Bill Gasiamis 33:35
Yeah, and it’s a challenging moment to get you through to the new awareness or to the other side where you learn something and you grow. And it’s great when you haven’t got people in your life that the people, and it’s really interesting, isn’t it, like, you create those new boundaries. And then you have to be alone for a little while you, you become lonely, you don’t have all these other people, right?
Bill Gasiamis 34:10
And it’s because they don’t relate to you in the same way that they were relating to you before. So they can’t maybe they’re not in this stage of evolving and changing and coming on on the ride with you. And they’re like, I don’t know this person anymore. I don’t relate to them, and they stop hanging out. So then you’ve got to build a new circle of supportive community and a new circle of friends. And that can take some time.
Letisha Living 34:40
Yeah. It did. And I think for me, it was just being more true to who I was as a person. What is it that I’m really genuinely interested in? Who do I want to be? Who do I want to hang around with what do I want my life to look like? And what do I need to do to get there?
Bill Gasiamis 35:04
It’s probably one of the hardest things that I had to go through and understand. And then there’s also some people that you can’t just cut ties with. Because they’re your family, and they’re still great friends, and they’re still great people, they’re just you’re not relating to them in the same way.
Family Support

Bill Gasiamis 35:29
And it’s some people you become distance to, even though they’re part of your close-knit family. And that’s also hard in being able to relate to them in a different way, now that you’ve kind of changed or evolved your thinking, you still have to accept them for who they are, and not necessarily disengage with them and get rid of them.
Letisha Living 35:50
I have disconnected or become estranged on my family of origin. So I don’t have a relationship, I haven’t had a relationship for nearly 10 years now with my parents or my siblings, and it was really hard. I was very depressed. So my youngest baby that I’ve had doesn’t know he’s aunties, uncles, cousins, grandparents.
Letisha Living 36:13
And being a single parent and post stroke survivor with the disabilities and not having that support was really, really hard. And that was part of that mental emotional challenge that I had to get past. But I have met people who do accept me and my stroke, who do accept with me and don’t judge me, and are supportive of me who have become that in place of what would otherwise have been that family support.
Bill Gasiamis 36:45
Right? That’s a pretty dramatic change, then. And that’s one that takes a lot of courage. Was it you that distanced yourself? Or did they distance themselves? Or did it happen simultaneously?
Letisha Living 37:00
It was a bit of both. So the dysfunctional patterns were there prior to my strike. But I was just putting up with them, because, hey, they’re family. So you know, but afterwards, when I’d made a decision about, I would just say to myself, if these people weren’t my family, would I accept this from them? Would I want them in my life? and it was either a yes or no. And then that’s where I had to make that decision and stick with it. I mean, I went back and forth a couple of times, but the repeated patterns of behavior are always there. And I made a decision about how I deserve to be treated, and I’ve stuck with it. It’s not about holding grudges or not, my my, my values are very ingrained in family. So that was so hard for me to go against everything that I believed in.
Bill Gasiamis 38:04
But boundaries are really important. Because emotional turmoil, emotional manipulation, any of the things that cause an emotional response in a negative way is requires a lot of energy. I know it’s really difficult for me to get through emotional problems that linger, they just drain your ability to do other things and to participate in the rest of your life. And I can’t leave emotional challenges attended to or unresolved for too long, because I just can’t focus on everything else. I can’t be a person that operates successfully, if I don’t if I don’t get that stuff sorted.
Letisha Living 38:54
Yeah, I’m the same, just unresolved things that will just continue playing on my mind forever. And repeated patterns. Also, I just feel like we can’t keep having same conversations. If we’re not changing anything, nothing’s changing. And then I’m like well, do I want to do this? Or don’t I.
Finding Yourself After Stroke

Bill Gasiamis 39:15
I completely understand that. You’re a bit of a creative person as well. And you tend to want to put things out there that you think are going to be helpful for people. So one of the things that you’ve done recently is you’ve created a book. Tell me a little bit about the book, what it’s called and how it came to be. And who’s involved.
Letisha Living 39:45
I compiled a book, it’s titled, Finding Yourself After Stroke. And very, very proud of it. It features 26 young stroke survivors from all over the world. Because as we know, every stroke story is different. So we’ve got lots of different stories from everywhere.
Letisha Living 40:06
They’ve got authors contributing from America, South America, Australia, Korea, Cambodia, Europe, UK and South Africa. So lots of people coming together, being very open, warts and all telling their stories about the lead up to their stroke. What happened? What caused it? Their life and perception and how things have changed for them during the rehab and recovery post-stroke?
Bill Gasiamis 40:41
And when was the book released? Is it available yet?
Letisha Living 40:48
We had an issue with the printing. So it should have been released by now. And I was hoping that I could show it for you on this podcast, but I don’t have the hardcopy yet that arrives on Tuesday. And so once I see that hardcopy, and make sure the covers has printed properly, that there’s no error on the pages or the page numbers or whatever, we’re ready to go from Tuesday, the book will be published and available.
Bill Gasiamis 41:14
Fantastic. So Tuesday will be July the fifth or something? What will it be?
Letisha Living 41:23
Let me just have a quick look. I think it’s the seventh? Oh no, the fifth you’re right.
Bill Gasiamis 41:30
Yeah. So that will be July the fifth. And we are recording this. Before that. I think it’s July the second today, when we’re recording this. And this interview will go out in a couple of weeks time. So hopefully by the time the interview has gone out, we’ll have already able to send people to the link to find the book that they can get it on Amazon, I believe.
Letisha Living 41:56
Yeah. So if you know one of the authors in the book, reach out to them and purchase a copy through them and support them. If you don’t know any of the authors in the book, you can find us on Facebook or Instagram, which is Finding Yourself After Stroke. Send us a message there, Or yes, it will be available worldwide through Amazon.
Bill Gasiamis 42:19
So what’s the idea behind the book? What’s the reason that you felt that you need to put this book out there?
Letisha Living 42:27
It was on my mind for a few years, and it just wouldn’t leave. So I figured I had to do it. And the reasoning why was I had a very challenging time post-stroke I was so I will say identified by who I was prior to that it was such a hard time for me to mentally emotionally recover.
Letisha Living 42:56
Like I felt like I had to re-find myself like Who was I now? And and it was really isolating. And it wasn’t until I started reaching out into some of the stroke groups and talking to people and connecting with other people that I realized, Oh, hang on a minute. I’m not the only one. There are so many people who say basically what I’m saying.
Letisha Living 43:20
And I thought, How good would it have been to have something like this book, when I had my stroke, because I’m quite introverted, I would never have gone to a stroke meetup group that just there’s no way that would have happened for me.
Letisha Living 43:38
And so if I could have had this quiet space book where I could read or feel connected and slowly reach out in my own time and realize that it wasn’t the only one, I just thought maybe I’m not the only one that this is something that could provide hope to people.
Letisha Living 43:54
So they know. They’re not the only ones that there is recovery head that recovery happens years and decades afterwards, and that they’re really not alone, even though every stroke event and recovery journey is different. And I just hope that when somebody reads it that they can find themselves in there somewhere.
Bill Gasiamis 44:18
Yeah, 26 young stroke survivors whose lives have been suddenly and unexpectedly impacted by stroke. I think that being that it’s such a broad range of people and that they’re from a large range of different backgrounds and ethnicities, etc. I think it’s gonna definitely relate to a lot of different people and give them perhaps a story of at least one of those stroke survivors who are going to really relate to and go wow, like, I feel like that person or I know what that person’s going through or are it’s great that somebody knows what I’m going through.
Letisha Living 45:00
Yeah, that relatability just really just makes things so much different when you feel like you can relate to somebody else. I mean, I do get messages. Now, some people are following the pages on Instagram, and Facebook and people send me messages saying, you know, thank you, this is me. And, you know, thanks for doing what you’re doing. And so I know that we have really done something wonderful. Like I’ve been able to take the most challenging time of my life and turn it into something that is a gift for others.
Bill Gasiamis 45:36
Yeah. Have you had the opportunity to meet all the stroke survivors? One-on-one?
Letisha Living 45:41
Not one on one, because some of them are overseas, but I’m connected to them all. And they’re just all amazing people, all just doing doing their post-stroke life in their own way and changing lives one at a time. I do want to meet all the ones in Australia.
Letisha Living 46:11
So actually I’m telling you something now that we haven’t openly shared or even planned yet, but we want to do an online launch for stroke week. An online launch of the book for during stroke week. And then afterwards, I’ll go to Sydney and Melbourne. I’ll meet all of the authors in South Wales in Sydney, and all the ones in Victoria in Melbourne.
Bill Gasiamis 46:34
And the stroke week is the Australian week of Stroke Awareness. And it’s run by the Stroke Foundation. Is that right?
Letisha Living 46:46
Yeah. The 14th of August.
Bill Gasiamis 46:50
Okay, that’s an annual event that happens. And there’s a whole bunch of stuff going on, it’s probably of the best times to launch a book about stroke, that’s for sure. How long did it take to put the book together? And how hard was it to get 26 stroke survivors to deliver on the shedule that you had given them?
Letisha Living 47:16
Yeah, so it’s been almost a year and a half in the making. So I first went to my publisher about a year and a half ago and put the concept to her. And she said, Yes. And from then we put a timeline together. And I put a call out and I was looking for originally just 20 people who were open to it. It wasn’t that easy. I thought that would be easy to find 20 people who would be interested in it. So it probably took us till about August or September, when we filled all of the spaces.
Spreading Awareness – Letisha Living

Letisha Living 47:57
And we ended up with 26, instead of 20. So all we had probably 30 something but a few dropped out along the way. And now we’ve got our 26. And we did the chapters we’ve done the editing, we went back and forth making sure that their stories were correct that we made a few tweaks to different sentences, so they are more easily easily read. Yeah, it’s been a journey, but it’s been great. It’s been great. It’s a good group of people. Everybody’s there for the same reason to, to raise awareness about your stroke, and provide hope and encouragement and support.
Bill Gasiamis 48:47
Yeah, I think it’s much needed. There’s definitely a need for an abundance of books around stroke recovery, and from different perspectives in different parts of the world so that lots of different people can relate to that in a different way, because we’re all unique in our own way. And I think the lack of resources available in this space, although that’s changing pretty rapidly now.
Bill Gasiamis 49:17
The lack of resources in this space has been one of the hardest things for me, especially early on, when I was first recovering from the first blade and the second blade. You know, nobody even told me, you know, there’s a good book I’ve read about stroke or somebody I know has read a book about stroke or somebody I know has written a book about stroke.
Bill Gasiamis 49:41
There was no conversations at all about that, and the lack of places to go to learn about what had happened to me and how I’m supposed to deal with it or overcome it or whether there were other people going through. So similar things. That was really hard, because I searched and searched, maybe I didn’t know what the right keyword searches were or whatever, I don’t know. But I really didn’t find any information that was tailored to somebody like me, it didn’t feel like it.
Letisha Living 50:18
I totally agree with what you’re saying. When I ended up on the stroke ward. It was just so I felt so disassociated. I was in this. And I’m not saying this to stereotype. But I never thought young people could have strokes. And here I am on a stroke board full of older people. And some of them were not doing as well as I was doing.
Letisha Living 50:44
And I just thought what is going on? Like, I just felt so disorientated disassociated, I couldn’t connect with myself or my surroundings. And then I can’t remember I was given some information somewhere, may have been in hospital, may have been through Vision Australia, I don’t know where it was, but I did get some info. And it had old people on it. And I was like, this isn’t even me. And, it just kept making me feel kind of worse, I guess. So I do hope that the book can bring some peace of mind to other young people who are going through it, that they can relate to it.
Bill Gasiamis 51:29
Yeah, I think it will, it’ll bring at least possibilities for people to connect to a wide range of different people in one book in one publication, which is really good as well, because that’s a lot of perspectives in one place. So you get a lot of a lot of bang for your buck. I suppose if somebody buys, I’m looking through the Insta. And in the Instagram page of it, which is finding yourself after stroke.
Bill Gasiamis 52:02
You’ve got some of the photos of some of the people who have contributed. And it’s just ridiculous how young some of the people are, you know, one of the young ladies is Beth, who was 19. She had a stroke. And then there’s people from all walks of life in all different ages.
Bill Gasiamis 52:27
And seems like they’ve all had different types of experiences. With regards to stroke. Caitlyn collapsed when she was stepping out of the shower. Caleb was 24 at the gym. Brooke’s husband heard her fall and dialled 911, Bob’s stroke changed his life for the better.
Bill Gasiamis 52:51
So much really good information in there. And it’s great. It’s great that this book has come together and that you had this idea that wouldn’t leave your head. So tell me about the fact that it wouldn’t leave your head if it was something. Have you ever had an idea that stuck around for so long? What made it stick around for so long and not go away? What was so special about it or more important that you had to do it?
Letisha Living 53:25
Okay, so this is going to sound really woowoo and out there. But every time I thought about it, I got goosebumps. I was like that’s it? I have to do it.
Bill Gasiamis 53:36
It’s not that woowoo. That’s pretty sounds pretty aligned.
Letisha Living 53:42
It was definitely in alignment for sure. Yeah. The name, everytime I thought about it Finding Yourself After Stroke boom, okay, that’s it. I have to do this. I can’t hide and not get my story out there. I was like, You’re here for a reason you’re here. You know, you survived this. You’ve been through these challenges. You’ve overcome these challenges.
Letisha Living 54:07
Now it’s time to go and help others. Now it’s time to get out there and lift people out of it and show them then a line show them that yeah stroke can change your life. But it doesn’t mean the end of life, you can still have a very purposeful, meaningful connected life.
Buy The Book: Finding Yourself After Stroke

Bill Gasiamis 54:25
Yeah, I completely agree. How much is the book going to be available for what will sell for?
Letisha Living 54:33
In Australia $30 Australian dollars. If you’re outside of Australia, it’s whatever the currency value is. So I think it works out to be about 20 to 22 US dollars. I don’t know where it is elsewhere in the world, but whatever it is on currency dates, $30 Australian.
Bill Gasiamis 54:53
Okay. So $30 Australian, there’s a hard copy that they can get and people can also get the ebook, and verbal is delivered instantaneously. Amazon will arrange the shipping and all the other stuff with regards to the hardcover. And if people want to go and get a copy of the book, they can go to a website as well? Can they go to a website? Or is it better just to go to Amazon and type in the name of the book, by the way, anyone listening, we’re going to have all the links in the show notes. So you can go there quite easily. But in the event that you don’t go to the show notes, where would they go to grab the book?
Letisha Living 55:38
So outside of Australia, or even in Australia, just go to Amazon. If you know one of the authors in the book go directly to them. If you don’t, you can send us a message on Facebook, or Insta.
Bill Gasiamis 55:52
Fantastic. On that note, thank you so much for reaching out a couple of times. I know we had a great chat a couple of weeks ago. I’m glad you’re feeling better after your bout with COVID was it?
Letisha Living 56:09
Yeah.
Bill Gasiamis 56:11
And you had to cancel at the last minute. I’m glad you’re feeling better. And you’re over that. And I really appreciate you coming on to the show.
Letisha Living 56:20
Thanks, Bill. Thank you for having me. I always enjoy talking to you.
Bill Gasiamis 56:25
My pleasure, absolute pleasure. And good luck with the book and good luck with future projects and with your ongoing healing and recovery.
Letisha Living 56:34
Thank you.
Bill Gasiamis 56:36
Once again, thanks for joining us on today’s episode. To learn more about my guests including links 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 is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.
Bill Gasiamis 57:00
If you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes. Subscribe to the show on the platform of your choice. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier and that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 57:32
Importantly, we present many podcast 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.
Intro 57:49
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 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.
Intro 58:18
Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 58:41
If you are experiencing a health emergency or things you might be called triple zero 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 in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Finding Yourself After Stroke – Letisha Living appeared first on Recovery After Stroke.
1 hr
July 18, 2022 Multiple Stroke Misdiagnoses – Angela Michelle
Angela Michelle was unfortunate to have multiple stroke misdiagnoses at 2 different hospitals for blood clots caused by a previously unknown blood clotting disorder which has resulted in lifelong deficits including vision problems.
Website
Instagram
Highlights:
01:42 Introduction
02:20 Misdiagnosed
04:58 Catastrophic Antiphospholipid Episode
13:54 It Gets Harder Before It Gets Easier
22:14 Angela Michelle Had A CTEPH
29:11 Post-Stroke Deficits
37:43 Slaying The Dragon
43:42 A Gift Of Perspective
51:18 Sexology And Boudoir
1:03:31 Stroke Bein Taboo
1:10:13 Chronically Beautiful
1:18:14 A Deeper Connection
Transcription:
Angela Michelle 0:00
So I’ve always been into yoga. But yoga was definitely more of physical practice before my stroke. And it was after my stroke that I turned to yoga to accept and make peace with what had happened with my anger and frustration at the hospitals.
Angela Michelle 0:17
I do notice like with yoga, some of the poses I struggle with, physically, and sometimes it’s my lungs, or sometimes it’s just like the dizziness or balance issues, those kinds of things. But I will say, because I know you have some amazing people who listen to you is that for me, yoga really helped me emotionally, mentally and physically. And it helped me so much that I ended up becoming a yoga instructor myself. And I actually work with stroke survivors now and I teach them how to do yoga.
Intro 1:03
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:16
Hello, and welcome to episode 202 of the recovery after stroke podcast. If you’re a stroke survivor with a story to share about your experience with stroke, and you’ve been thinking about reaching out to be a guest on the show, but we’re waiting for the right time to reach out. This is it. If you go to recovery after stroke.com/contact You will find a form that you can fill out to apply to be a guest on the show.
Introduction

Bill Gasiamis 1:41
As soon as I receive it. I will respond with more details on how you can choose a time that works for you. And for us to meet over zoom. My guest today is stroke survivor Angela Michelle, who is also an internationally published and award-winning photographer, and educator, mentor, certified sexologist, body image workshop facilitator, yoga instructor, public speaker and advocate. Angela Michelle, welcome to the podcast.
Angela Michelle 2:12
Thank you so much for having me.
Bill Gasiamis 2:14
My pleasure thank you for being here. Tell me a little bit about what happened to you.
Misdiagnosis
Angela Michelle 2:20
So it was 2016. And I was going through where I was struggling with my health, I didn’t know why I was really sick. I kept having like chest pain and was coughing a lot. It was in May. And I actually found out I was pregnant the day after Mother’s Day and I was super excited.
Angela Michelle 2:47
We had been trying for two years. But I was really sick. I ended up going to urgent care. They just thought I have like a cold. Two days later, I ended up in a hospital with pneumonia. And I was there for a whole week. And on the last day I was there I woke up with what I could describe as the worst headache of my life.
Angela Michelle 3:13
And it was my head and it went kind of all the way down my neck. I now know that’s my carotid and I kept paging the nurse and I was like something’s really wrong. I just feel it something in my body. Something’s really wrong. And they just kept dismissing me. And then I started having some visual changes just in my right eye like things were zigzagging and not matching up.
Angela Michelle 3:40
And so again, I was paging the nurse and I kept telling them and at one point, the head charge nurse came over and just told me, Oh, honey, you just have anxiety. And they decided, in my opinion, because I kept calling them to discharge me. And they just said you’ve been here a week you need to go home and sleep. We’re going to discharge you.
Angela Michelle 4:05
So they discharged me and my dad picked me up from the hospital. And I have a stroke in the car on the way home. The stroke I never lost consciousness but this I went completely black. Like I have no vision in it to this day. And I was very sick. I was vomiting, and just really nauseous, headache.
Angela Michelle 4:33
My dad took me to a second hospital and they did not recognize it as a stroke either. Because it wasn’t the classic stroke symptoms. It wasn’t the droopy face. It wasn’t the slurred speech. So I sat there for about five hours and I missed my opportunity to get the drug that could have you know potentially reverse some of the damage.
Angela Michelle Had A Catastrophic Antiphospholipid Episode

Angela Michelle 4:57
I made it to a third hospital and then by this time it was the following morning when I got there. And they immediately realized I had a stroke. And they realized that not only had I had a stroke, I had clots throughout my body. And I was in what is known as a Catastrophic Antiphospholipid Episode, it was a caps.
Angela Michelle 5:22
And I didn’t know I had a clotting disorder before this happened. So this was kind of the first I’d ever heard of it the first I’d ever. You know, before this, I had never even been like, admitted to a hospital, I had, you know, gone from my regular checkups, but I had never been hospitalized.
Angela Michelle 5:43
And I was in the hospital about three weeks. And at one point, they asked me if I wanted a priest to read me my rights. Like they did not think I would survive. And I did end up miscarrying my child. And I also lost the vision. And I think I’m very lucky in a sense that I didn’t have a lot of physical deficits. But there has definitely been more cognitive, and, like, the emotional impact of everything that I’ve had to work through. And I think, my anger and frustration at the system for failing me.
Bill Gasiamis 6:29
Well justified, I reckon, definitely. So you’re in hospital for such a long time before you had the actual stroke event? Or, you’re going through it and having it and they missed diagnose, did they do tests? Did they do all the things that needed to be done?
Angela Michelle 6:54
No, I didn’t know better. I didn’t, I didn’t recognize that I was having symptoms of a stroke. And they didn’t either. And, you know, knowing what I know, now, they should have realized they should have put it together. And the hospital I was at, calls himself a comprehensive stroke center. Like they sell themselves as we’re one of the best stroke hospitals in the country. And I had a lot of anger about that. And I had to work through that.
Bill Gasiamis 7:26
Yeah, I can imagine. And how long after you were discharged in time? 30 minutes? Hours? Like, how long was it before you were discharged, left the hospital and got into the car? How long did it take for you to actually have the stroke?
Angela Michelle 7:43
Five minutes.
Bill Gasiamis 7:45
And it didn’t occur to you guys to go back to that hospital and tell them?
Angela Michelle 7:50
No, we were closer to another hospital. At that point, we were in an area of town that’s called the medical center. And there’s literally like hospitals everywhere. So we went to the next the first closest one.
Bill Gasiamis 8:02
Okay. And then you got there, even though you’re actually now full-blown having a stroke. You’ve gone in, they’ve gone it’s not a stroke?
Angela Michelle 8:14
They didn’t even see it as a stroke. They were like, you don’t have the droopy face. You don’t have the slurred speech, you can still walk although I couldn’t walk well, I was in a lot of pain and distress. But yeah, because it affected my eye and my vision. They were like you need an ophthalmologist, and we don’t have an ophthalmologist at this hospital. So we need to transfer you to another hospital. And they made me wait for about five hours to get that transfer.
Bill Gasiamis 8:51
In that five hours, did your condition worsen?
Angela Michelle 8:55
It worsened in that I was vomiting profusely, and I was becoming very weak. I was starting to get disoriented. But like I said, I never truly lost consciousness. I was definitely aware of what was happening. Although it was, to me a state of I think your body goes into like a state of shock. And so I was there and aware, but I wasn’t able to even comprehend what was happening.
Bill Gasiamis 9:31
And how far along was the pregnancy?
Angela Michelle 9:34
So when the stroke happened, it was very early. It was about six weeks.
Bill Gasiamis 9:39
Did you know you were pregnant? You did know I think I heard you say.
Angela Michelle 9:43
Yeah, so I had just found out. I found out the week before I got admitted to the hospital, the first hospital that missed the stroke. And I told them you know, I was like I’m pregnant and I was very scared about you know, everything they were giving me is it safe for the baby? Am I okay, you know, what test are we doing? Is this safe? I was very concerned.
Angela Michelle 10:07
Like I said, my husband and I had tried for about two years to get pregnant. So it was very much a wanted and desire pregnancy. So yeah, I did know I was pregnant. I found out that it was not a viable pregnancy. Once I got to the third hospital, and they ended up doing a vaginal ultrasound, and they determined that there was no heartbeat, ultimately, that gave them the ability to actually save me. Had there been a heartbeat, I don’t know if they could have because it was a state hospital.
Bill Gasiamis 10:47
Because of the abortion issue,
Angela Michelle 10:50
Because of abortion issues. And because a state hospital gets state funding and the state is anti-abortion. So they won’t give funding to any hospital that performs them or even does, like a, I think it’s called like a DC or DNC, where it’s like after a miscarriage and they kind of like clear it out that way you don’t have like sepsis. They won’t even do that for me. So I did have to carry you know, unviable pregnancy for another five weeks.
Bill Gasiamis 11:33
And then they allowed you to have the procedure to remove even then? What happened then?
Angela Michelle 11:44
They wanted me to just naturally have my miscarriage. So I had to wait until and hope that my body would do what it needed to do. It did. I had the miscarriage about five weeks later, because I was already started on anticoagulants, because of the clotting disorder, they wanted me back in the hospital when I was having the miscarriage just to make sure that I didn’t have, you know, too much excessive bleeding. And maybe I needed a blood transfusion. So I had to have my miscarriage at the hospital.
Bill Gasiamis 12:22
And you’re going through, you’ve been diagnosed that you’ve had a stroke at this point in time. You’re going through that and dealing with vision loss and all the other challenges. And also at the same time you’re going through a pregnancy that’s not viable. And then you have to go through the miscarriage all at the same time.
Angela Michelle 12:45
Yeah, I did. It was a lot. It was definitely a lot. And, you know, I know, you like to talk about like the recovery part. And that was, it was huge to me to try to get back what I felt like I had lost and I don’t think I brought this up before. But before my stroke, I was a photographer that had been my career for the last 12 years. And so to lose sight for anyone is devastating.
Angela Michelle 13:18
But I think for a photographer, it’s an extra whammy. And so I was a wedding photographer, and I did other types of photography as well. But I had a wedding scheduled two weeks after my stroke, and I had to call that client and just tell them there was no way I could do it. It was out of state and I couldn’t get cleared to travel. I was having to miscarry. And so it definitely, you know, on top of losing everything with my body and my child. I felt like I lost my career that I had worked so hard for too.
It Gets Harder Before It Gets Easier
Bill Gasiamis 13:54
Yeah. Identities getting trampled on every corner, there’s no getting away from it, you know, everything that you knew and did the day before all of that stuff happened is just completely stopped changed and out of your control, and you’ve got to somehow navigate it and you’ve got no skills or tools to navigate it because you’ve never been through that before.
Bill Gasiamis 14:18
And it makes sense when somebody says what the hell is going on? Like what the frick is going on here? You know, how am I supposed to get through this with no skills and no previous experience in this space? And somehow you do and you do come out of it. And that’s what the podcast is really about. It’s giving people some hope that in time there’s going to be a change in the tough stuff and better things are coming but you got to go through the tough stuff unfortunately we all do with stroke.
Bill Gasiamis 14:58
Yeah, so Let’s just go back to the issue with the pregnancy. It was an unviable pregnancy, they knew that. And you still weren’t able to have that pregnancy resolved or I’m not sure what the word is because of legal issue with regards to the state of Texas, and its rules on abortion and therefore the hospital that you’re at. So is it still considered an abortion to end a pregnancy when it’s an unviable pregnancy? And what do you think about that?
Angela Michelle 15:37
I think it’s a gray area. And I think that the hospitals were scared to lose their funding. So they would rather not step into that gray area. I didn’t realize at the time how deadly that could be for me. I think had I realized I would have maybe gone to another hospital or fought harder, I don’t know, I would have probably done something else. I think the the trauma of the stroke and everything that had gone through. I don’t think my brain could even comprehend that.
Angela Michelle 16:16
At that time, I think I was just doing what they told me. And at that point, I was really trusting that hospital because they were the ones that saved me. And the other two had failed me. So I trusted them. And I trusted that my body would do what it needed to do. But I didn’t realize how much danger I was putting myself in until I learned more.
Bill Gasiamis 16:41
Yeah, glad it worked out. And on reflection. What sounds like it was the right move, because the outcome meant that you get to be on the podcast, and you’re still here. And that’s great. But I know what you’re saying about learning things later and going, oh, gosh, that’s a risk that I took that I didn’t know I was taking and wasn’t an informed risk. Right. And that, that’s a little bit alarming to hear.
Bill Gasiamis 17:14
Because I certainly don’t like making decisions unless I’m completely informed about all the risks, whether they’re good or not. And the decision that I make should be mine in the end, not a doctor’s, in my opinion, I don’t believe a doctor should be telling me what I will or won’t do, or what medical intervention I will or will not have. So I argued with my doctors a number of times, and I sacked a couple of them and went to a different hospital and got second and third and fourth opinions.
Bill Gasiamis 17:47
Because they were going to open my head up, they were going to do stuff in there that I needed to make sure that when they did it that I was not being coerced into any of the decisions that were made on my behalf. Because even though I had the cognitive challenges that stroke causes, I still had enough ability to make important decisions about my life.
Angela Michelle 18:20
And I think that’s really important that you bring up informed consent. And that’s something that I realized is so important. And you know, you mentioned firing doctors, I have since fired many doctors and had to get second opinions and really push back on my doctors who sometimes don’t want to run test or don’t agree. And you know, I like you said,Yes, I have cognitive challenges, but also I’m able to make decisions and I’m able to learn new things and gain knowledge.
Angela Michelle 18:56
And so after this happened, I really learned a lot and all I could about strokes and the disease that I have that caused it. And the more I learned the more I wind to one spread awareness and help others because I don’t want others to go through what I did. But I also wanted to kind of take my power back after feeling so you know, helpless, because that’s what it felt like at that time.
Bill Gasiamis 19:27
Yeah, you give your power over to somebody else and you entrust them with that they are experts because they’re in the medical field and they help people all the time. And there is a little bit of power that you give up knowing that they’re experts and that they do that for a living and that they are able to save you or make life or help you out. So there’s a bit of trust but there’s also that I think there’s it’s healthy to have a little bit of not sure if the word is distrust but a little bit have skepticism about what they’re about to do or say.
Bill Gasiamis 20:04
And not necessarily just take everything to face value and to question and to be your own advocate and to make them prove their case. There’s no reason why they can’t. Well, that’s your thought. That’s what your idea is. Well, why? Prove it to me, show me the evidence. Explain to me how that’s wrong. And I think it should be their job to feel comfortable in answering questions of their patients. Because we’re the ones that are attached to our body.
Angela Michelle 20:38
Absolutely. I say, now, I see my care with my doctors. It’s a collaboration it had to be a collaboration between me and my doctor, because like you said, it’s my body, I know what I’m experiencing. And, you know, if I could turn back time, I would go back to when I first started having symptoms in that first hospital, and I would have demanded a neuro check. I didn’t know when to do that. So I think seeing my relationship with medical professionals now as a collaboration in my care, has really changed how I interact with them in good ways.
Bill Gasiamis 21:19
Yeah, I think if you’re driving the communication with your doctors in, in that manner, if you’re driving it with that outcome to collaborate, then I think you will find the right doctors, and you’ll know which ones immediately don’t fit. Because they won’t be able to understand that concept of collaboration.
Bill Gasiamis 21:43
And then it just won’t feel right. And then you’ll be able to go, Well, these guys are not a good fit for me, we need to find another person who is. Yeah, I love that. And that’s such a great way to look at it. That’s what it’s meant to be. It’s meant to be a collaboration rather than you’re just some body or a body that I that I do stuff to.
Angela Michelle 22:09
That they treat.
Bill Gasiamis 22:10
Yeah. And then they send you on your way.
Angela Michelle Had A CTEPH
Angela Michelle 22:13
Yeah, and I think I didn’t understand that until I have this experience. And it was this experience. And I know this is about stroke. So I won’t go too far off on my other thing, but the clotting disorder also caused a lot of pulmonary embolisms, and it led me to develop a rare form of pulmonary hypertension called CTEPH.
Angela Michelle 22:38
And it took me another year after the stroke to get that diagnosis. I ended up on oxygen 24/7. My doctors didn’t know why. And it took me doing a lot of research it’s actually really interesting. Because of my stroke, and because I had been missed, I became very active on being an advocate and raising awareness. And I started posting on social media. So when I ended up on oxygen, I posted about it on social media.
Angela Michelle 23:09
And it was an old high school friend who realized he put it all together and he realized he suspected I had CTEPH. And he was the one who told me I had to take that information to my doctors. And at first my doctors were very resistant. It’s really rare. It’s, you know, really, it’s just so rare. We don’t think it’s possible. And it took me being my own advocate and saying, I need this test because my friend was telling me exactly what test I needed.
Angela Michelle 23:40
And I was able to get the diagnosis. And I’m sure you can kind of see my scar. So I did have to have open heart surgery on my lungs. When I was diagnosed, they gave me less than two years to live with that particular disease. So had my friend not intervene and helped me I don’t know if I would be here right now.
Bill Gasiamis 24:03
Was your friend a medical expert?
Angela Michelle 24:06
Oh, yeah. He’s a heart surgeon.
Bill Gasiamis 24:09
Oh, okay.
Angela Michelle 24:11
So he’s a heart surgeon. And even though it’s not a disease he treats a lot, he knew of it, and he’d seen it. And so he just put it he’s like, you have a clotting disorder. Now you can’t breathe or ending up on oxygen. I think you have pulmonary hypertension from the clots in your lungs. He put it together.
Bill Gasiamis 24:33
Wow. Okay, great. I love it. And that’s the thing. That’s the issue that we have here. And I’m sure that it’s an issue all around the world it’s people going to doctors with information that doctors don’t take seriously. Like without ever having spoken to you they know better or having ever met you they know automatically when you walk in the door that it’s so rare that you couldn’t possibly be the lucky one who’s got it?
Bill Gasiamis 25:07
Give me a break, give me the benefit of the doubt. You know, we have Medicare here in Australia, where medical is free. And when you go into the online portal where you check all your records, and all those types of things, there is an allowance for certain number of blood tests per year. And it’s like $1 value that they allocate. And most people don’t use it, but some people go and they use it up and then the doctor has to approve all these other ones, if they don’t approve them, you have to pay for them.
Bill Gasiamis 25:49
And, you know, that’s fair enough. But my wife requested some blood tests of our GP recently, and he said, No, we can’t do those, because you don’t have all these things that he thinks that she needed to present with to have this particular blood test.
Bill Gasiamis 26:10
And it’s like, even then, it’s within the allowable limit of blood test she hasn’t had blood tests for a number of years, it’s within the allowable financial cost limit to have that blood test. And yet still, you think that it’s better that she doesn’t have the blood test.
Bill Gasiamis 26:29
So that’s kind of what’s going to give you information as to how to begin to treat this lady anyway, it starts with knowing something, not knowing nothing, and then doing nothing, so that you’ve got no information. So even if we rule it out, we’re a step ahead than we were when I came here at the beginning. And this inability for them to grasp that concept is why I really was my own advocate, and why I went, you know, to the extreme to make sure that my doctors were the right ones, etc.
Bill Gasiamis 27:06
And why people need to go back and question their doctors. 99.9% of doctors are great, but also 99.9% of them make mistakes. They’re having a bad day. Yeah, they misunderstand what you’re saying. And they need the conversation to occur.
Bill Gasiamis 27:29
I think they’re better served by us, if we don’t allow them to just say no, and then we move on with it. I think they’re better served by us insisting and then proving perhaps to them, that may be it would have been the right call to agree to this particular test a little while ago. And even if they’re correct, at least they’ve eased the mind of the person who is coming in with a concern.
Angela Michelle 28:01
One you’re getting more info, like you said, you’re ruling things out. And that’s, that’s kind of science, right? Like, we try things and then rule things out. And then but yeah, you have to be your own advocate. And I did have to push a little bit with my doctors have no, I really want this test. I really think this is a possibility.
Angela Michelle 28:25
And you know, I’m so glad I did. And I think I was so lucky to have that friend who was a heart surgeon. And I really felt like the stars aligned for me, like I knew, this is a hard path, but this is my path. And we say I was dealt some bad hands, but I’m gonna play them. I’m gonna play my hand.
Bill Gasiamis 28:53
Yeah, you have to agree. So after the heart surgery, and the stroke, I know you were left with some deficits as a result of the stroke. And then you had the heart surgery. So what do you live with every day that’s related to those medical conditions and challenges that you went through?
Post-Stroke Deficits
Angela Michelle 29:11
Yeah, so as far as like, cognitive things, I forget words, I forget people’s names, like, people I know. Like people like, I know you know, I’ll still forget your name. And then at three in the morning, it’ll come to me or, you know, it’s random. and sometimes I wonder what was the stroke or what was the heart surgery, or you know, the lung surgery.
Angela Michelle 29:38
The lung surgery is a very intense surgery where they actually put you on a heart lung bypass, and they have to stop it for 20 minutes at a time. So your body’s cooled to like 60 degrees Fahrenheit, and that allows them to stop the heart lungs for 20 minutes.
Angela Michelle 29:56
And so I know that there could be some residual effects from that too, because you medically die. But I struggle with like, just staying on task or, you know, staying focused remembering things, things like that. As far as any physical things, the lung disease definitely affected my ability to move.
Angela Michelle 30:25
Like I said, before the surgery I was on Oh to 24/7, I still sleep with it. And I still have to use it on exertion. So like, I can’t run without oxygen. I can’t do aerobics about oxygen. And then the eyesight that was the big one for me, so people think I can still see on my right eye. I’m like, No, it’s completely black. I might as well be wearing an eyepatch.
Angela Michelle 30:52
And, you know, I’ve learned to navigate that as best as I could. After the stroke, I was driving within three months. And you know it for me, driving has always been like a freedom, I guess, ever since I was like a teenager. And so for me, being able to like get in my car and go somewhere was something I really wanted to do.
Angela Michelle 31:16
And it was important for me to feel like, normal again, I guess to do that. So I got behind the wheel within three months. And I just learned like, I have to be aware I have to really turn my head and look and make sure. So yeah, you know, I always tell people driving is almost easier, especially cars nowadays that kind of beep at you like not other cars like our car.
Bill Gasiamis 31:43
Yeah, they have the sensors etc.
Angela Michelle 31:45
Yeah. So I actually struggle more of walking, because I tend to like walk into things or walk into people because I don’t see anything like if you’re on this side of me, I don’t see my hand until, like, right now I see it. So those are the little things that I struggle with. I guess a balance to I forgot. I’ll say that one thing that helped me personally after my stroke was, so I’ve always been into yoga.
Angela Michelle 32:16
But yoga was definitely more of a physical practice before my stroke. And it was after my stroke, I turned to yoga to accept and make peace with what had happened with my anger and frustration at the hospitals. And I do notice like with yoga, like some of the poses I struggle with, physically. And sometimes it’s my lungs, but or sometimes it’s just like the dizziness or balance issues, those kinds of things.
Angela Michelle 32:52
But I will say because I know you have some amazing people who listen to you is that for me, yoga really helped me emotionally, mentally and physically. And it helped me so much that I ended up becoming a yoga instructor myself. And I actually work with stroke survivors now and I teach them how to do yoga.
Intro 33:17
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 33:41
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recovery after stroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 34:01
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.
Angela Michelle 34:20
Because I tell people if you can breathe, you can do yoga.
Bill Gasiamis 34:24
I love it, I love it, love it, love it. And you know why? Because you said the three magic things emotional, physical, and mental. And I think stroke recovery is a three-pronged approach. And I’ve said it a number of times. And the main three headings are in emotional recovery of physical recovery, and a mental recovery.
Bill Gasiamis 34:47
And if you neglect those, or one of those, you’re doing a pretty good job at recovery, but you’re missing one of the key ingredients. And I think one of the most important ingredients is the emotional Recovery, if I can get anybody to do anything, is get them to do the emotional recovery. Because physical recovery is something that everybody else does to you anyway.
Bill Gasiamis 35:11
So when you go to a hospital, they look at you, they think, Oh, well, this part’s not working, or that part’s not working, we can physically see that make that better for them, make that work for them, and send them on their way. And I know that does also help with the emotional recovery and the mental recovery, it kind of is a byproduct.
Bill Gasiamis 35:38
They’re related. They’re interrelated, I have to be, but that, I know that when people become physically active, or more physically active after show their spirits lift, and all those things get better, and I get it. But it’s not a direct approach to the emotional cover. It’s not actually doing emotional intelligence work, it’s not actually checking in with trauma, from previous experiences about your life that are sitting in your heart and impacting your heart, whether it’s a breakup, whether it’s a loss of a child, whether it’s just the stroke or the other condition that you’re diagnosed with.
Bill Gasiamis 36:17
So you have to do the specific work at the heart level to support you, and take that initial emotional recovery that started from the physical recovery to take it to the next level. Just like the mental recovery, you if you support the emotional recovery, and the physical recovery, your mental recovery also improves. But then there’s some specific things that you need to do.
Bill Gasiamis 36:48
At the head level, that is going to support you in your recovery, how you think about things, or how you take information from people or who you will let impact you and affect you. Or whether you’ve got thoughts in your mind that are not serving you well, because they’re just ill formed, maybe they were formed when you were a child. And you’ve kept those with you.
Bill Gasiamis 37:11
And you’re still continuing using the same method, and you’re trying to get a different result. And you’re going insane, because you’re not getting a different result. And you’re still going back there. You know, I’m describing me here, by the way, if anyone was wondering, Where do I know this stuff from I’m describing the guy that I was, and then the guy I became, and I’m still working to become because of the fact that I’ve gone to those three places specifically to do work that I was afraid to do.
Slaying The Dragon

Bill Gasiamis 37:43
And I just finished having a conversation with some a family member of mine. And he’s nearly 50 years old. And he will not go to the emotional center of himself and do that work where the trauma lies. And he clearly told me that it’s really hard and he’s never gone, then he probably never will. And that’s so bizarre to me that you’re aware of where the problem is, you know that you have to go there.
Bill Gasiamis 38:11
And something stopping you from going there. Let me tell you, when you go to where the problem is, you slay the dragon, it’s gone, that dragon can no longer control you, or influence you, it’s going to be hard, don’t expect that you’re going to go and slay a dragon easily and it’s going to be done. And thus it’s a task. And it’s going to be a big fight.
Bill Gasiamis 38:35
And you’re going to have to take a few blows, and you’re going to have to feel disheartened, then you’re going to have to feel all those things. But then you’re going to have to get up and go back there again. And every time you go back there, you take an inch back and an inch back and an inch back.
Bill Gasiamis 38:51
And before you know it, you’re an evolved human being and you’ve let go of the past. And now as trouble comes your way, you’re dealing with them individually, not the whole list of things that you’ve never dealt with, that are compounding and sitting on your shoulders and making life you know, more complicated and more difficult.
Angela Michelle 39:16
I think you bring up something really interesting because I think what you’re talking about is you’re building resilience.
Bill Gasiamis 39:24
I took all that time to say that.
Angela Michelle 39:27
Yeah, no, I mean, you’re building resilience and it is a mindset thing. So you know, I do multiple things. I was a photographer became a yoga instructor. I’m also a body image coach, and I work a lot with clients who struggle with body image and I always say it’s really about mindset. And we really have to do that deep emotional work in order to slay that dragon right to slay that dragon, that little voice that tells you you can’t wear that or you can’t do that.
Angela Michelle 40:00
And you know, a lot of my clients who have body image issues are everyday people who maybe haven’t experienced anything like we have. But I also get clients who have experienced some physical things, whether it be a stroke or another disease that has taken away parts of them, that I then have to kind of help them to see that we adapt. And that’s resilience is learning to adapt.
Angela Michelle 40:31
And I think when people stay, like so fixed, that’s when we don’t grow. So resilience is growth, it is doing the practice of, you know, like you said, like, you know, you chip away at it, right, and it’s not something you’re going to chip away all at once. And it’s going to be a perfectly formed, you know, statue of something, no, it’s something you constantly work at. But it gets easier with time, because you build that resilience.
Bill Gasiamis 40:59
Yeah, if you’ve been avoiding emotional trauma, and dealing with emotional trauma for 48 years, it’s gonna take some time to get to the bottom of that, and overcome that, you know, and I’ve been in counseling since I was 26, or 27, something like that. And that’s my gymnasium. That’s my repetition, I go to the gym, and do my weights, and I come out feeling better for having gone there, and being the lighter, resilient, stronger, whatever it is.
Bill Gasiamis 41:34
The hardest thing that I’ve ever had to deal with, personally, that affected me, my body was the strokes and the and the brain surgery, and it still affects me every day. And I don’t think I would have been able to remain to be in a positive mental state, I’m not always there, I have bad days as well, all those things. I’m a normal guy. I don’t think I would be this emotionally and mentally, as stable as I am, if I hadn’t done that work before the stroke.
Bill Gasiamis 41:34
So I had my strokes at 37 to 40. But I had already been in therapy for 10 to 12 years before then. And I can tell you that I had a “perfect upbringing” you know, my family life was great. My support networks were great. The people I grew up with, and the things that I experienced were all great, but we didn’t have any thing that I could say was a definite massive bump in the road for me.
Bill Gasiamis 42:37
So because I didn’t have any issues arise in my life, I didn’t have the skills to deal with stroke. If I had continued on my merry way and never been to therapy, I would not have a toolbox to dive into and take out some tools to help me get through stroke. And I wouldn’t have known that I can go back to my therapist immediately on the 10th day after I was diagnosed and begin the healing and the therapy once more, you know.
Bill Gasiamis 43:12
So that’s kind of where it’s at for me. And I hope that people have over who have been overthinking that idea of getting help and support or going to the emotional discomfort and tackling it head on. I think I hope that they stop overthinking it, and now just take action and do it. And then experienced the relief, the amazing relief once it’s done.
A Gift Of Perspective – Angela Michelle

Angela Michelle 43:42
Yeah, absolutely. I think that, you know, for me, seeing a therapist was huge in my healing in helping me to address things as they came at me and the way that I had to adapt. And I know this might sound totally out there, but I see my stroke as a gift of perspective. I know. But for me, it was a gift because I tell people, I learned things about myself. And I was forced to face things about myself at the age of 38 when I had my stroke that some people never face in their whole life, because they’re not forced to go there.
Angela Michelle 44:31
And my stroke forced me it took me way out of my comfort zone. And it forced me to address parts of my life and parts of myself that I needed to dig up. And in that way it was a gift. It was a gift of perspective. And I treat life so much differently than I did before. And that’s when I tell people that’s the gift that it’s given me and I can see I can be mad about the hard parts.
Angela Michelle 45:01
And I think I can personally hold the two truths, because that’s nuanced. I can hold the truth that it’s hard. But it’s also a gift of perspective. Because it’s forced me to think it’s forced me to address these shadow parts of myself that maybe I didn’t want to address before.
Angela Michelle 45:22
And I think if people can see, and hold those two truths, that then that can help them to move forward. Because, yeah, it’s awful. And it’s really like, shooting experience. But this time, there’s beauty, there’s beauty and the community that came out and supported me, the friends who have been there for me, my husband has stood by my side, there’s beauty and all that. And I can see the beauty in the darkness. And I hope that other people can do,
Bill Gasiamis 45:57
You have to have the darkness, you do, to allow the beauty to be illuminated, because that’s how it stands out you. You take it for granted that it’s there when you’ve had a gifted life or the perfect life. And I did, I’ve got to say that I had a perfect life until I was 37. And all my problems were created in my head, they were all bullshit, they weren’t true at all.
Bill Gasiamis 46:22
And, that was my undoing. It could have been my undoing even further, even worse and worse. And it was because I had never had the resistance of the difficulty of life to show me what I think is difficult is actually not true. That’s not difficult. That’s just fear that I’m allowing to control me. What’s actually difficult is waking up one day in the morning, not being able to feel your entire left side, and not having any control about how that happened.
Bill Gasiamis 46:58
And then putting your trust into somebody else to make a better for you. And you don’t know if they can, if they will. And if you’re going to see 38 And then what? And I’m not saying that I would like if I could go back, I wouldn’t change the stroke. I bloody would I would rather not have had it and not had brain surgery and not done all that stuff. But then I never would have gone into the deeper dive of personal development of challenging my beliefs of seeking out new and amazing teachers and people who are going to guide me and support me and teach me new things that were going to help me.
Bill Gasiamis 47:49
And I never would have been able to pass that on to my children. And I never would have been able to be an example of how to tackle something, as shit as stroke, and how to come out on the other side, banged up by it and wounded and a little bit molded by it but still come out victor, in my opinion. And then I would have not been on a podcast with Angela Michelle.
Angela Michelle 48:19
And I wouldn’t be here.
Bill Gasiamis 48:20
Yeah, you know, and we’re doing this thing that I never ever would have done. The before stroke Bill never, ever would have reached out to meet people on the other side of a planet, let alone for something like stroke, who I’ve never met before, there would have been a million reasons in my head that I would have made up to say, that’s not possible. Why would they want to talk to me, etc, etc. It just never would have happened. And here we are. I think this is going to be episode 201 or 202.
Angela Michelle 48:54
That’s amazing.
Bill Gasiamis 48:55
Yeah, it’s been a journey and a half. And it’s been such a good one. And now, you know you’re working in the accessible yoga space. I mean, what a gift, like what another gift for you to be able to A. participate in yoga, actively get a lot out of it, and then have the other emotional part that helping other people gives you because it’s a cycle, right. If you help others, it helps you and so on.
Angela Michelle 49:26
Yeah, I think one of the best things we can do as stroke survivors is try to find ways to be a service to others. And I think you do that with your podcast. And I think I do that through my advocacy work. And through all the other work that I do is of being of service to others. That’s a gift to us too, because it makes us feel valued and proud and like we’re contributing to something that’s larger than us.
Angela Michelle 49:55
And that comes back to the emotional right like we need that emotion Additional sense of recovery. And for me part of that recovery was being of service. And so when I decided to become a yoga instructor, it was because I knew I wanted to work with people like this, like me. I wanted to be there for people who didn’t think that yoga was accessible to them.
Angela Michelle 50:19
And, you know, I used to go teach yoga class, and I would teach like a general open class for everyone. And I was there with my oxygen. And I was teaching. And, you know, I’m like, I’m not here to show you how to do handstands. I’m not here to show you how to do inversiones. I’m here to teach you about yoga and like the emotional aspect and how it can help you transform your life.
Angela Michelle 50:43
And so like you said, you wouldn’t be doing this podcast, I would have probably never become a yoga instructor. And I would have never gone down the route that I have, because of a stroke, I’d probably still be burning myself out doing photography. And I was burning out, I really was, I still love it. I miss it. And I hope to get back to it soon. But it forced me to look for other ways to fulfill my life.
Sexology And Boudior – Angela Michelle

Angela Michelle 51:18
And the other thing I did, and I know I didn’t bring this up, but I do a lot of things is I became a certified sexologist. And because I did a lot of work with boudoir, it kind of fit in really well. And my specialty there is also in helping people with chronic illnesses and disabilities find intimacy in their life. And I think that that is another important element. And when I talk about intimacy, I’m not necessarily always talking to just about sex, it’s about intimacy, as far as like, just even like a hug, or a touch or a deep conversation of someone, it’s opening ourselves up to other people.
Bill Gasiamis 52:02
Let’s talk about that further. Because I never experienced the lack of intimacy, because of stroke, as in, I was able to participate in intercourse with my wife, all that stuff was all fine and normal. So I don’t have an experience in and I haven’t been able to raise the issue of it and the question of it and have the deep conversation about it, because I just don’t know.
Bill Gasiamis 52:36
And I haven’t come across anybody who has been willing to so far, but the only reason I had to refrain from intercourse with my wife intimacy in at that level was because the doctors told me not to. And I remember being at hospital and the first seven days, and then going home, and they said to me, now when you go home, no going, no doing any strenuous work, which meant that I had to stay home from work.
Bill Gasiamis 53:08
No doing this, no doing that. I said, can I go to the gym? And they said, No. And then of course, I asked the next question was, what about sex? Can I have sex? And they said, No. And my wife went all? Yeah, typical, of course, he would ask that question. And so we made sure that we took doctor’s orders and didn’t do that, because the blood vessel in my brain had burst, it was still leaking, and a high blood pressure episode, or elevated heart rate too much, or straining too much could make the bleed dramatically worse.
Bill Gasiamis 53:43
So we took their advice. But then at some point, things settled down. Because I’d say quite a few months later, when things settle down, and I kind of just said to my wife, we’re going to do this, let’s go there, you know. And it’s like, and whatever happens, happens, you know, what a way to go? All that stuff.
Angela Michelle 54:08
And there’s a way to go.
Bill Gasiamis 54:11
So we got through that. And, that was the extent of it. Right. But I know some people then have had serious strokes where they might have hemiplegia and they may not be able to physically get into certain positions or participate in the same way that they used to have you come across people in that space from other conditions doesn’t have to be from stroke, and how do you help? What are they the key things that they need to come to terms with or overcome to help them start to explore that space again?
Angela Michelle 54:52
Yeah, so I think everyone’s different. You know, everyone’s stroke is different, as you know. And so I do think it’s important that we talk to our doctors. I don’t know how it is where you are. But here, doctors aren’t trained much about sex. Which baffles me a little bit. So when you bring it up, sometimes they’re very, like, flustered and they don’t know how to respond.
Angela Michelle 55:19
Like I said, nothing’s taboo for me. And that’s part of why I do this work, because I can talk about these things. So I remember asking a doctor, like, is it okay, if I have sex? And they’re like, why are you asking me? And I’m like, Well, I don’t know. Like, I just had heart surgery, as you know, I feel like I should ask. So I do think it’s important to have a conversation with your doctor first.
Angela Michelle 55:45
And if you’re not comfortable having that conversation with the doctor, I think that you need to address that, whether it’s finding another doctor, or you know, finding another like medical professional, maybe it’s a nurse, or maybe it’s someone else who can have that conversation with you. I also think it’s important that we have conversation with our partner. In my experience, a lot of people who are with someone who’s had, you know, a devastating illness or disability, they’re scared to have sex with you, like, because they don’t want to hurt you.
Angela Michelle 56:23
And so you have to be able to have that conversation. One of the things that I really recommend, is, I don’t know how aware you are with kink, but in kink in the kink community, we do things like green light, red, light, or yellow. And so it’s like, a red is like, stop. A green is like, I’m good to go. And yellows like this is okay, but don’t take it further. And so that allows you and these conversations need to happen before sex before the intimacy because you need to be able to communicate.
Angela Michelle 57:04
And for someone like me, who may be getting shorter breath, right? Like, I need to be able to let my partner know like, I’m still okay, right? Or, hey, I need to back off, I need to catch my breath. And the same thing, if you have any kind of deficit, or pain, you know, you may be screaming out in ecstasy, but your partner may not know that they may think you’re actually in pain.
Angela Michelle 57:29
And so being able to have that communication will really help put your partner’s mind at ease. Because you could be like, No, I’m good to go. But your partner’s like, I’m scared. I’m not really sure. Then the other thing, I think it’s we have to adapt, because, you know, I talk a lot about adapting in the work that I do. But it’s so true. And it’s really true for stroke survivors as we’re learning to adapt to our new body, right?
Angela Michelle 57:56
A new old body. And so yeah, you may not be able to have sex the way you used to, but that doesn’t mean you can’t, right. So there’s other ways. And so sometimes it’s finding different positions, it’s using props, it’s using intimacy devices. It really at the basis boils down to that communication. But there are plenty of things that we can use, like the props like the intimacy devices that can help us to find that level of intimacy we want of a partner, even if our body can’t do what it wants did.
Bill Gasiamis 58:37
Yeah, that does make sense and that and see, I never would have been able to hold a conversation in that space. Because I’ve never delved into different forms of sexual intercourse with anybody about any, I’ve never studied it, I don’t understand that I’ve never helped anyone. So it’s like, how do you begin that conversation? I think that’s where a lot of people suffer, because sex was and always was, like, a certain way.
Bill Gasiamis 59:06
And whatever that way is, even if it’s a unique to you and your partner, it’s usually always a certain way. And then it’s like, how do you mix that up? Like anything? How do you adjust and change and find a different way? And, because sex is so taboo, there aren’t a lot of conversations about in your general, everyday life unless you’re hanging out in those circles. I couldn’t have that conversation with 90% of the people that I know I just can’t have a conversation about how, because what do you do different in the bedroom, you know, tell us so that we can try this?
Angela Michelle 59:49
Because I have these conversations with people all the time. But no, really it is about exploring. It’s about exploring your body, your partner’s body and also keeping a sense of humor. Because bodies, right, they’re weird. And they change. And the thing I tell people is our body’s always in a state of change, it’s always changing, right? Like, our bodies changed much faster, because we had a stroke. And it was like an instant, where our bodies change. Everyone’s body is always changing.
Angela Michelle 1:00:24
So learning to adapt to those changes, and, you know, it’s just gonna look different, and that’s okay. It’s okay, that sex is going to look and feel and be different, you can still find intimacy. And I think it’s important, because sex is a part of the human experience. And if it’s something that’s important to you, then it’s important to you. And it’s something that you need to, you know, for you to have the quality of life that you want, you need to address it if it’s important to you.
Angela Michelle 1:00:58
Now, sex isn’t important to everyone, you know, some clients are asexual or demisexual. And it’s like, you can take it or leave it. And so maybe those people are fine without it. But it’s a very individual experience. And so if it’s important to you, I think it’s important to find ways to adapt and explore, to make it a part of your life in a way that you’re going to enjoy in that is safe.
Bill Gasiamis 1:01:24
Yeah, I had an interesting conversation with Misha Montana, an adult film industry actress. And she was talking about how she had her stroke at 31. And she’s really involved in her films in the, I imagine in the production and the whole range of skills that are required to put a film together, not just in the acting. And she was really concerned that she wouldn’t be able to go back to work.
Bill Gasiamis 1:01:59
And she lived for a little while in denial about the stroke, because she had to go back to work. And she went back to work. And she kind of faked being well. And then she went back to review the films that she had made to see that she actually pulled it off quite well, then people, most of the people around her did a notice. But then X amount of months later, the acceptance or the fact that she had a stroke may have dawned on her or, you know, she has gone through the phases of denial and all those different phases.
Bill Gasiamis 1:02:40
And then people were surprised by her saying, I’m not feeling well, I kind of had a stroke and all that kind of stuff, because they were connecting her behavior at the beginning of the whole process. And her behavior now. And it’s like, you didn’t look like you had a stroke, you didn’t behave like you had a stroke, it didn’t tell us that you had a stroke. And now, you’re telling us that you are and it wasn’t computing, they were getting confused about what she was trying to say about how she was feeling nine months or 10 months later. And it was really interesting that in a taboo industry, like the adult film industry, that stroke is taboo. That was like, weird.
Stroke Being Taboo
Angela Michelle 1:03:29
I think it is taboo in a lot of settings. I mean, I think sometimes, you know, like people don’t know how to respond to it. Right? And I think especially those of us who’ve had stroke in our younger years, right? Like you said, you were 37 You said she was 30? Right. 31. I was 38. And so I think sometimes it is hard because, and, you know, I’m assuming it and she didn’t have a lot of like she didn’t physically look like she had a stroke. You don’t physically look like you had a stroke. I don’t think I physically look like I had a stroke.
Angela Michelle 1:04:16
And because of that sometimes we’re met with, you know, confusion or like are you sure? Like you know, or people like doubting our experience. And that can be really invalidating to us. And so I think it’s important that we, you know, face and embrace, like where we are in our journey. And I think that it’s important that we let those around us know like what our wants and needs are because we have to honor our bodies. We are at the mercy of our bodies. And so we have to be honoring them. And so I’m sorry that she had that experience but I hope that they are now in a place where they are empowered by their life’s experiences.
Bill Gasiamis 1:05:08
Yeah, I think a lot of people most people get there. I say that, well, look, most people that are my podcast get there because I imagine that some people who don’t get there, or are not there yet, and they haven’t been on my podcast yet. And they haven’t expressed that to me yet. So this is the people that this podcast is for those ones who are not there yet in acceptance and are not there yet, in going through different phases and are evolving and emerging from this somehow.
Bill Gasiamis 1:05:40
Misha has made it her thing now to overcome the taboo of stroke in her industry. And I’m pretty sure at some point, she was doing a documentary, or they’re doing a documentary or something like that, which is going to discuss the issues that she faced around stroke, and then having to go back to work in the industry to raise more awareness. So she’s got to the point where she is more determined than ever to tackle this other taboo in an industry that she’s tackling taboo in.
Bill Gasiamis 1:06:22
And she’s got the opportunity to do some amazing work, coz she got at least 50,000 followers on Instagram. And if the statistics are accurate, one in four people will experience a stroke in their lifetime, at least 10,000 of those people either know somebody who has experienced a stroke or has had a stroke, or will experience a stroke. So it’s great place.
Angela Michelle 1:06:50
She can be of service now. And that’s got to be very fulfilling for her to like, be a service, right? Like she’s helping other people. And she’s changing the culture around the tabooness of talking about our bodies, whether it be about sex, or about, like health. And so I think that’s amazing. I’m really excited to check them out, because I hadn’t heard of them before.
Bill Gasiamis 1:07:17
Yeah, yeah. I posted a question on my Insta. And it was as a result of somebody else asking me, has anyone ever been on your podcast that had vision problems? And the question I asked is, How do you manage? Or how have you adapted to vision loss after stroke, and you responded, and that’s what caused me to reach out to you and ask you to be on the podcast.
Bill Gasiamis 1:07:47
And you told me about the fact that you lost vision completely in one eye. And as a result of that, that impacted your ability to be a photographer. And then I asked you, so how have you adapted without your full vision into photography, and you mentioned that you had to step back from it.
Bill Gasiamis 1:08:08
So this is the part where I love to indulge with this little piece of me, which sort of says, I reckon you should get back into photography as a person with your knowledge about photography, and take it or leave it this advice. It’s not really, it wasn’t advice that you asked for.
Bill Gasiamis 1:08:33
So I don’t mind how it gets received. But from your understanding about photography, and with this different perspective that you have now because of the vision, I think you could do some amazing work. And it would be a compelling story. To hear how your photographic life has evolved and changed as a result of this challenge that has been thrown to you that you didn’t ask for.
Angela Michelle 1:09:10
I didn’t stop doing photography. I still photograph I do. I will tell you that the thing that made it the hardest, the vision loss wasn’t the hardest thing about coming back to photography it’s the lung disease. That was the hard part. However, I still photograph I said that God has a sense of humor because he took my right eye. And even though I’m right-handed, I’ve always been left-eye dominant.
Angela Michelle 1:09:43
So when I pick up the camera, I do that. I don’t have to do that anymore. Because I can’t see out of the sight at all, but it’s like muscle memory so my eyes still like does that. I can’t shut just this I for some reason. So I’ve always been left-eye dominant. So I never stopped photographing. Well, I stopped photographing at the start of the pandemic, because I was scheduled for lung procedures out in California.
Chronically Beautiful By Angela Michelle

Angela Michelle 1:10:13
And I stopped in order to go have these lung procedures. COVID delayed them about two years. But I actually just have my last procedure done last May. So I’m actually in the process of looking at getting photography back up and running. But in the meantime, I’ve still done personal projects, I still photograph. And my personal project that I’m really passionate about right now, is I photograph people with chronic illnesses and disabilities.
Angela Michelle 1:10:46
And it’s called chronically beautiful. And so I photograph people to show and share the beauty that exists in all of us. And it doesn’t matter if we have, you know, a body that doesn’t work the way that it used to. Like, there’s still beauty in us. And I want to show people that. And I want to show people to invisible disabilities and invisible illnesses. For me, mine is of visible, I think for years to you, it’s probably mostly invisible for you.
Angela Michelle 1:11:20
And so I want to show that too, is, you know, you have worse stroke survivors, we don’t always look like stroke survivors. I’m sure you get that all the time. As do I have like, well, you don’t look like you’ve had a stroke. And I always say, Well, what should I look like to you? Would you prefer? Yeah, how would you? How do you expect me, but I’d like to challenge them and challenge that. So I do still do photography, I stepped back mostly because of the lung disease.
Angela Michelle 1:11:51
The one thing I’ll say is, I can’t do it at the same level I did. And that’s part of the change that I know I have to adapt. I can’t keep up with the number of sessions I used to do because of the amount of doctor’s appointments and blood draws I have to go do my mom have weekly blood draws at the lab. And it would just be impossible for me. And then, you know, the eye thing. I always say when I’m behind the cameras kind of when I feel the most normal, because I would have shut my blind eye anyways.
Angela Michelle 1:12:26
So I feel normal. When I photograph, the hard part for me is staring at a computer editing photos for hours. That’s the hard part for me. And that’s why I say I won’t be able to do it at the same. What’s the word I’m looking for? Not the level. Yeah, I guess like the same, like the amount that I used to, like instead of doing like, you know, 20 shoots a month, I’m gonna probably only be able to do like seven or something like that. So I’m working, how that’s going to work. But the photos you see actually behind me, those are actually my photos that I’ve taken. So yeah, I still do photography.
Bill Gasiamis 1:13:09
And I’m looking at your Instagram. That’s why I mentioned a lot of your photos on your Insta. And I’m looking at him going like.
Angela Michelle 1:13:17
What Insta are you on?
Bill Gasiamis 1:13:18
Hi, Angela. Michelle.
Angela Michelle 1:13:20
Go to ravenredphoto.
Bill Gasiamis 1:13:23
Okay. Yeah.
Angela Michelle 1:13:24
That’s my photography work.
Bill Gasiamis 1:13:26
I think I was there a bit earlier. Yes, that’s it. I mean, I’m looking at those photos, and you’re a talented photographer. And whether you’re doing it for a living or for whatever reason you decide to doing it and go back to doing it. It’s just necessary, though, I think that you’re still doing it, because the photos that you’re capturing are really amazing photos. And that’s kind of where I was coming from. It was about me trying to encourage you thinking that you were discouraged and you weren’t doing it anymore, it was just me reading further into that message than what was actually happening.
Angela Michelle 1:14:08
So when I had my stroke in was 2016. I didn’t stop photographing until like I said, the beginning of 2020. And that was to go have additional lung procedures. COVID just kind of set everything back a couple of years. But no, I continued to run my business for several years after the stroke. And so yeah, it’s still my passion. It’s still what I love. It’s still a part of me for sure.
Angela Michelle 1:14:40
And I think that’s really important, too, that you bring that up though, because I think that you know, as stroke survivors, we have to find our passions and, you know, you can’t, don’t give up everything you love. You just may have to figure out a different way, whether that’s doing less, or doing it differently. Or you know, one of the things I did this year because I knew I wanted to start photographing more is I switched cameras, and I needed a lighter camera, I needed something that wasn’t as heavy.
Angela Michelle 1:15:11
My old camera was a workhorse, and it was heavy. And it was hard to carry around. And the other thing is, you know, because my right eye is gone, my left eye is good on a good day, bad on a bad day. And that’s from the clotting disorder. So I was struggling with focus. So one of the things I did is I went to a camera that’s got a better like, autofocus on it. So that way, I’m not missing shots that are, you know, important to me, because I’m not focusing, right. So finding ways to adapt to still do to what you love is so important, because that’s part of our healing, too. It’s part of our emotional healing, I think.
Bill Gasiamis 1:15:51
And I’ve met stroke survivors, who were musicians play guitar, you know, and the rest of it. And then, of course, they’ve lost the ability in one of the arms or hands or whatever. And at some point, you know, they got down on themselves, because they weren’t able to go back to play the way they used to. But they haven’t, they haven’t unlearned all the hours and hours of learning that they put into that.
Bill Gasiamis 1:16:24
And I just feel like they can still express themselves and just be creative about the way that they re express themselves. And that’s really what I’m driving at, just find a way I had no form of expression before that I just used to do my work and go home and be the kind of regular ordinary, everyday guy, and then I needed to start expressing myself.
Bill Gasiamis 1:16:46
And that was what was also part of how the podcast came to be it was I needed to find a way I needed to learn how to do it, I need to solve all the problems about podcasting, recording, equipment, editing, uploading all the junk syndicating and it’s like if I do that I’ll be able to connect with people have amazing communication with people that I have nothing in common with other than stroke.
Bill Gasiamis 1:17:14
But then we’re going to find similarities and things that we agree on. And things we don’t agree on, which is perfectly fine. And I’m going to be able to express myself. And I’m not doing it, believe it or not, it was a selfish pursuit at the beginning, it had nothing to do with you or anybody else, it was all about me. And then is when I realized that all about me, that’s about other people became this loop of amazing stuff.
Bill Gasiamis 1:17:43
And, I can see your photos. Some of them are just amazing, where you’re taking a photo of somebody, and then that’s a pursuit that you love, right photography, and capturing people images or whatever. And then you hand it over to that person, they look at that photo of themselves. And they go, Wow, that’s just amazing, you know. And I’ve responded like that when somebody’s taking my photo, and they’ve shown a side of me that I never knew was there.
A Deeper Connection
Bill Gasiamis 1:18:14
And it’s like, wow, and I think that you have now you have a greater ability to take even better photos, because of all the stuff that you’ve been through. And you can see things in people that you couldn’t see before. Whether it’s their light, or their mood, or whatever.
Angela Michelle 1:18:41
It’s about intimacy, because what it’s allowed me to do is connect to people. And I think that’s what you do on your podcasts too, is we connect to people, and we connect on this very deep soul level. And I think that that has made me a better photographer. And I think that that has taught me to really look at someone and see, like their soul for a better word, like who they are that light in them.
Angela Michelle 1:19:20
And then I try to bring that out. And so yeah, I think in many ways, it did it changed the way I thought about Absolutely. But I don’t think that’s bad. I just think it’s different. And that’s the thing I think about strokes is that your life is gonna change, but that doesn’t mean it’s gonna be bad. It’s just gonna be different. And we adapt. I mean, we’re so resilient humans, we’re very resilient.
Angela Michelle 1:19:48
And we have this ability to adapt. To me, what gets in our way is just ourselves. We get in our own way. Right. And so I think, you know, like you said that through three prong approach, the mental, the physical and the emotional, and having something you’re passionate about and something that can connect you to other people, you know, you do it through your podcast, I do it through yoga, through photography, all these other things, but finding ways to connect, will really help you in your own journey.
Bill Gasiamis 1:20:23
Yep. And do it about yourself, make it for you then make it for anybody else. And if other people happen to like it, maybe that’s a bonus. Maybe it isn’t, it doesn’t really matter. And I get really not inspired. But I really love the works of Frida Kahlo, the Mexican painter, who painted mostly self portraits of herself. And she was doing, you know, her version of a podcast putting out there things that were taboo to talk about in the 1930s and 1940s, about your illness and your condition.
Bill Gasiamis 1:21:04
And she would have broken down so many barriers by painting and depicting herself in this person struggling with her condition and all the challenges that she faced. And I look at it, I can’t say that she was and I don’t know anything about art. So in my mind, I don’t know if she was a talented or gifted artist or not. But she has amazing art, that tells an amazing story that was really important. And ahead of her time because she was a female in Mexico, drawing about taboo subjects, like living with chronic illness. She was a trailblazer. Nobody was doing that back then.
Angela Michelle 1:21:54
Yeah. And I think that’s what makes her art so compelling, is it connects on this like soul level to people. And, you know, I do think she’s an amazing artist. But I think it was her ability to transmute her pain, her suffering into something else. And I think that that’s part of the gift of for me, is like I’ve been given this, how am I going to transmute it. And, you know, I think you’ve seen like, on my social media, I call myself an alchemist. Because it really is about transformation. For me. It’s about transforming. How we think how we see how we interact with the world, how we connect, it’s about just that transformation that can facilitate so much healing and so much beauty.
Bill Gasiamis 1:22:50
I love it. On that note. That’s a lovely way to end the podcast, I’m going to share all of your social media on the show notes, so people can go and find them, click through to your pages. But just for the people that are listening, if they did want to find out a little bit more about the stuff that you do and connect with you, where would they go?
Angela Michelle 1:23:17
Sure. So I have a website. It’s a ravenredmaven.com. And then on Instagram, my photography is ravenredphoto. And my handle for my personal where I do a lot of advocacy work is HeyAngelaMichelle. And that’s h e y.
Bill Gasiamis 1:23:39
Fantastic. Thank you so much for being on the podcast. I so much enjoyed our chat.
Angela Michelle 1:23:44
Thank you so much, Bill. I really appreciate you and I love what you’re doing. So thank you for doing it.
Bill Gasiamis 1:23:51
Well, thanks so much for joining us on another episode of the podcast and listening to today’s episode. To learn more about my guests, including the links and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes You’ll find the episode in the list there. If you would like to support this podcast, the best way to do it is to leave us a five-star review, and a few words about what the show means to you, either on iTunes, or Spotify.
Bill Gasiamis 1:24:23
And if you’re watching on YouTube, comment below the video, like this episode and get notifications of future episodes by hitting the subscribe button and the notification bell and subscribe on the other platforms of your choice. Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to somebody that is on the road to recovery after their own experience with stroke. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:25:00
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Intro 1:25:17
All content on this website at any length blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:25:39
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Intro 1:25:39
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Intro 1:26:19
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1 hr 27 min
July 11, 2022 Stroke Dialogues – Jeri Goldstein
Jeri Goldstein is the author of the book Stroke Dialogues: Conversations With Dad which she wrote after her dad who was 85 at the time, had his stroke and struggled with aphasia.
Website
Amazon
Highlights:
01:05 Introduction
08:14 Ischemic Stroke
14:46 Dealing With Aphasia
22:02 Post-stroke Deficits
36:25 Stroke Dialogues: Conversations With Dad
44:19 Taking Stroke Lightly
56:36 Self-Care Awareness
1:04:25 Big Bird Story
Transcription:
Bill Gasiamis 0:00
Was he having emotional outbursts? Did you notice any changes in his emotional expression?
Jeri Goldstein 0:09
In the beginning, he was crying all the time. And it was super frustrating because he couldn’t even push the call button for the nurses to come. And then when they did come, he couldn’t tell them what he needed. So that’s why we had to advocate a lot to make sure that he was close to the nurse’s station. Instead of being stuck in the room when they first put him all the way down the hall, so that he would be totally alone. So being right in front of the nurse’s station, he could just call out in some way, shape or form.
Intro 0:52
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Jeri Goldstein

Bill Gasiamis 1:05
Hello, and welcome to episode 202 of the recovery after stroke podcast. Today’s guest is Jeri Goldstein, author of the book stroke dialogues, conversations with dad, which she wrote after her dad who was 85 at the time, had his stroke and struggled with aphasia. In those frustrating, long-winded conversations, the family was able to find some funny moments. And those are the stories that she shares in the hope of bringing some awareness and lightness to what is a difficult situation for many families and their loved ones. Jeri Goldstein, welcome to the podcast.
Jeri Goldstein 1:45
Thanks, Bill. I appreciate you having me at this late hour of the evening for me, but I’m happy to be here.
Bill Gasiamis 1:54
What time is it there for you?
Jeri Goldstein 1:56
10:30
Bill Gasiamis 1:57
And where are you?
Jeri Goldstein 1:59
I’m in Florida and South Florida, north of Miami and South West Palm Beach. So smack dab in the middle there.
Bill Gasiamis 2:10
Sounds amazing. I’m in Melbourne, Australia. It’s 12:30pm here. And it’s one day after you?
Jeri Goldstein 2:20
Yes.
Bill Gasiamis 2:21
So welcome to the future.
Jeri Goldstein 2:23
Thank you. And I know this because I have a coaching client who lives in Queensland. Yeah. And she would always attend my groups, which would happen at three o’clock my time, Eastern and it would be four o’clock in the morning or five o’clock in the morning depending on eastern daylight or whatever’s Eastern Standard. And she would always be getting up very early. And I also have a cousin who’s moving to Melbourne.
Bill Gasiamis 3:00
Well, that’s very cool. Melbourne’s good place to live. It’s an amazing place to do. You’re on the campaign trail to promote your book stroke dialogues, conversations with dad. Before we talk about the book, I love the way that you’ve just set it up in the background there. And you’re making sure that everybody can see it. I love it.
Jeri Goldstein 3:25
Yeah. I thought that since the book, right now, as we’re talking today. I don’t actually have a physical copy of it yet. I mean, they sent me a proof copy, but they have a great big gray banner, right across the title. So it does me no good, but I did my graphic artists and web designer got me a file. So I was able to print it out so that people could actually see it was a fun thing to do.
Bill Gasiamis 3:58
Yeah, well done. You’ve got an interesting background. We’ll talk about that in a little while. But tell me a little bit about the stroke that your dad had and how you became interested in having a conversation with people via a book about that situation that your dad found himself in?
Jeri Goldstein 4:21
Sure. Well, it came about that in 2012. I get this amazing phone call at 10:30 at night from his then girlfriend that said your dad’s had a stroke. And I was not in Florida at the time I was living in Virginia. So having that kind of a phone call late at night was like oh my god, what now and what can I do all the way here not being there?
Jeri Goldstein 4:55
And my dad was an incredibly active, vibrant, creative and, functioned really well in the world. And so the thought of on my side thinking that he had a stroke, I just could imagine all the things he was going to be upset about, not being able to do any longer, depending on what the outcome was, which at 10:30. At night, we didn’t know what was going on. We didn’t know what kind of a stroke, we didn’t know how serious we didn’t know anything. So that started the ball rolling.
Bill Gasiamis 5:44
So how old was your dad at the time?
Jeri Goldstein 5:49
He was 84 going on 85.
Bill Gasiamis 5:55
Okay. So, you know, when I hear about somebody having a stroke at 84 85? It’s like, if that’s the right territory, that’s kind of the right time when you hear about it. And all the young people that I know who have had a stroke, always say, I thought that stroke only happens to older people. And they get really caught unaware. So when you heard that your dad had a stroke, it’s clearly not a nice thing to hear. But is it something like “okay, well, that kind of makes sense” or do you go into the same denial that we went into? Because he’s your dad, you’d love him in regardless of his age, but you’re not connecting stroke to his life?
Jeri Goldstein 6:45
No, I mean, I’m not connecting stroke to age, you know, I’ve gotten a lot of friends and musician friends in particular, who have had strokes very early on in their career, early on in their lives. But the immediate thought was thinking about the people who I personally knew. So that was my grandmother, who had a stroke at 80 something.
Jeri Goldstein 7:15
And it was my cousin who had a stroke, maybe at 60 something, and was very alone during the time when she had her stroke. So it was going to be a 20 to 25 year period, that she would be riddled with the results of the stroke. Because nobody got to her in time. Like they got to my dad. I mean, within seven and a half minutes, he was at the hospital.
Bill Gasiamis 7:54
Yeah, right.
Jeri Goldstein 7:54
You know, getting TCP, and so he was in the prime window of opportunity to make this be as less harsh as possible. If that could be the term.
Ischemic Stroke
Bill Gasiamis 8:14
Oh, yeah. Well, that is a term. I mean, that’s less damaging or less harsh. And what was the cause of the clot that occurred?
Jeri Goldstein 8:26
It was an ischemic stroke. And so, I don’t know that they know where it came from. At least, I don’t know that we ever got that information. But it was left brain, right side of the body. That was affected. Right. Okay, as well as the expressive aphasia.
Bill Gasiamis 8:56
Okay. And then, were you able to get to him rapidly? When you found out, were you able to be with him immediately?
Jeri Goldstein 9:07
Well, it took me a couple of days to get down there because I heard about it on Sunday. We didn’t know what was going on until Monday morning. And then I had to make plans because I had to figure out well, am I flying? Am I driving? How long am I going to be there? What were all the scenarios that I had to figure on in order to possibly stay for a long time?
Bill Gasiamis 9:37
Were you the only family member?
Jeri Goldstein 9:40
My sister did fly down. So it was my sister and myself, we were there, but I got there Wednesday, so it happened Sunday. I had a drive and like finally got there by Wednesday and then my sister flew down and she was there Wednesday also.
Bill Gasiamis 10:04
What’s it like seeing your dad in that situation, the first time that you saw him?
Jeri Goldstein 10:10
There he is, in the room right past where my mom had passed away, in the hospital cubicle. And there was Dad looking small and scruffy not having had his beard shaved. And so that always makes somebody look worse. But he was in good hands. He was in the ICU when I saw him. So intensive care unit. There were lots of people around, so he was being attended to. And then he also had lots of friends that were here in the community, so that he was able to have lots of visitors.
Bill Gasiamis 10:57
Was that a good thing?
Jeri Goldstein 11:02
That was a good thing, because he doesn’t like being alone. And it was a good thing, because people who knew him could advocate on his behalf, they could say things like, well, I know him. He likes this, or he doesn’t like that, in terms of food choices and those kinds of things. And he didn’t feel so alone, compared to how alone he was feeling in his head because he couldn’t express himself.
Jeri Goldstein 11:35
You know, at that moment, words, were not coming out that he was thinking they were all you know, the term that came out was plus. Everything was plus. People were plus, everybody was plus, and there were N numbers. Everything was a number. Except for me. He always called me baby. And I was still baby.
Bill Gasiamis 12:10
Wow. That’s awesome.
Jeri Goldstein 12:12
It was weird. I never was so excited. I mean, I was very excited to know that was still there. But everybody else was plus one plus two.
Bill Gasiamis 12:29
It’s such a strange situation. And I remember my godfather passed away probably two and a bit years ago, and he was in his 80s. And he had a brain tumor. And it was a non-cancerous tumor, but it was just growing and as a result of its growth, and being inoperable, caused every part of him to slowly just stop working. And even though he was on his feet, and able to kind of appear upright, and all that type of thing. He wasn’t able to express himself.
Bill Gasiamis 13:05
And unfortunately, the only word he knew, and the only word he would use for everything was a four letter word that starts with F. And it was kind of interesting, weird, strange, funny, sad, all at the same time having to spend time with him, and get him and hear him somehow try to express himself. And that’s the only thing that came out was just so strange and difficult to hear you know.
Jeri Goldstein 13:47
Oh, very difficult and very difficult to try to steer the person into some other form of communicating. I’m sure.
Bill Gasiamis 13:59
Yeah. And of course, it’s abrasive when you hear that word. I mean, oh, no, I’ll say it now. Fuck is abrasive to hear for everything.
Jeri Goldstein 14:10
Right? Every word, every sentence, everything.
Bill Gasiamis 14:14
Every response, every request that’s made of him for everything. It’s just really abrasive. And it’s shocking to hear that coming from him. And then you kind of have to reconcile that and go hang on a sec. This is not the conversation that’s happened. It doesn’t mean how it’s being said. But none of that is relevant. It’s just a noise that’s coming out of his mouth. And for some strange reason. That happens to be the only noise.
Dealing With Aphasia – Stroke Dialogues
Jeri Goldstein 14:46
Yeah, but I mean, you can imagine I don’t know your experience, were you affected by aphasia?
Bill Gasiamis 14:59
I’m not that kind, not in that sense, I was unable begin sentences and finish sentences. At one point in time, I didn’t know what I was trying to say. I knew what I was trying to say I couldn’t find the words at some point. But it was only for a small amount of time. So my experience was it’s really hard for me to even connect to it. It was that long ago, and it was like for such a small amount of time, but it was in the months.
Bill Gasiamis 15:32
And I would get frustrated with my wife because it was so early on for us and didn’t understand what I was going through. She’d be waiting for me to finish or start a sentence and be going. Yeah, come on. Yeah, cut it out, spit it out. That was really the hard part is dealing with her reaction to me, because she was completely ignorant about what might be happening. And of course, I didn’t actually know what was happening. And what the issue was, because I wasn’t diagnosed, I know that I experienced that now. Because I’ve spoken to so many people about it, and I’ve reflected on my time. But I wasn’t officially diagnosed, because I didn’t actually get a neuro psychological assessment, which is the one that tests your cognitive abilities.
Bill Gasiamis 16:30
And I was struggling for about nine months to a year. Just to understand where my cognitive abilities were. And that meant that I had to deal with the speech issue, I had to deal with not being able to type an email read, drive, work. And it wasn’t through lack of physical ability. It was all at that time, it was through lack of cognitive ability. And nobody recommended anything to me about getting a baseline for where I’m at, so that I can get some help. I was missed completely.
Jeri Goldstein 17:16
Because one of the things that you mentioned is, about your wife, wanting you to finish a sentence or start a sentence. And I noticed that a great deal with visitors, friends that would come, that would want to visit and ask questions, and not really have a sense of how dad was or was not able to respond or complete a thought. And my sister and I was always trying to get him to work at it, to get to his own conclusion, to think it through if he could think through the lack of language capability.
Jeri Goldstein 18:16
But others wanted to just fill in the blank, like, if they would ask a question, and they knew the answer, they would just fill it in for him. And I found myself being kind of a director of like, “no, no, let dad work at this”, you know, give it a few minutes. You don’t have to fill in the answer. So it would be teaching, not that I knew what I was doing. But I would just intuitively think he’s got to work it, he’s got to come to this conclusion. And if it takes a day, if it takes all week, we’ve got to work it with him. And allow that moment of recognition to happen, no matter when it happens.
Bill Gasiamis 19:07
It’s such a terrible habit that people get into, and they do it to children. I know a lot of the people who I hang out with that have young children, and you’ll go over to their home, and you’ll have a chat. And then you’ll see the child and you’ll interact with a child. And then you’ll say hi, how are you? And then the parents answer.
Jeri Goldstein 19:32
Similar thing, yeah.
Bill Gasiamis 19:33
And it’s like, shut up, don’t answer for your kid.
Jeri Goldstein 19:36
Give the kid a chance. Right? Yeah.
Bill Gasiamis 19:39
Then I’ll say how’s school and then they’ll answer and then they’ll say, oh, so my kids a bit a shy, because your kid doesn’t need to speak because you’re speaking on its behalf. You really can’t say that to them, either because that’s a bit rude or whatever, or they might take it the wrong way. So you try and navigate that. And I often get kids on their own, I’ll try and get them just where their parents are distracted for a moment and just interact with them, and even if it takes a long time because they are shy or whatever. Or they don’t know how to answer. Okay, no problem. If you don’t want to chat, then you don’t want to chat.
Jeri Goldstein 20:22
Right. But I know with this situation it was, knowing full well that everything was locked in his mind that he knew all of the questions to ask. And he knew all the things he was trying to get to, but didn’t have the facility of words. And the ability to put the words together because they just weren’t coming out, or the sense of, time or what things were or how do you touch your nose? What is your nose? What are those things?
Jeri Goldstein 21:07
And, for me, it was just sad, but also a challenge to keep working at it, and be there to keep the conversations going. And so that’s when all these funny conversations came out of him just trying to get to his answers for all of the missing links that add missing pieces, and understanding all of this stuff.
Bill Gasiamis 21:42
Yeah. So how long was that in hospital?
Jeri Goldstein 21:48
From about a month and a half, that included rehab, so about a week in the hospital, and then the rest of the time was in rehab and doing the rehabilitation.
Post-stroke Deficits
Bill Gasiamis 22:02
And then when he went home, I imagined he was still left with those challenges communicating, was he dealing with any physical deficits?
Jeri Goldstein 22:12
Yeah, his right hand. He couldn’t use his right hand. And he was right handed. So most of the challenges, he started coming back with the cognitive. And speech started to come back. In the hospital, he regained his sense of time, regained his sense of how to do certain things. I worked with him and other people worked with him all the time, his conversations became more fluid, but he still had to work at it. And he did speech therapy for almost a whole year to get back to the real life situations and what things meant, and how do you say these things, and then learning how to do everything with his left hand.
Jeri Goldstein 23:13
And I’m sure you’ve spoken to lots of people who had to just swap over, and so writing with his left hand eating and then of course, not having the two hands, so having other people do stuff for you, open packages, cut your food, so there’s a part of it, that was also embarrassing, not being able to have a full facility of what you knew before, and to have to constantly depend on people.
Bill Gasiamis 23:52
And does that also mean that he had tell people to shower him and toilet him and all that type of thing?
Jeri Goldstein 24:00
Yeah, we had an aide that was helping like eight hours a day, and to take him to doctor’s appointments and rehab and all of that. So yeah, I was very fortunate that we were able to have a fabulous aide to work with dad, and also helped him with his speech therapy homework. And he worked hard every single day. He worked for hours and hours at both exercises, dexterity exercises, physical exercises, as well as speech and cognitive exercises.
Bill Gasiamis 24:41
So it sounds like he had a really good recovery mindset. He was really keen
Jeri Goldstein 24:49
After a while, I mean, he was very depressed in the hospital and had to actually get him some anti anxiety meds in order for him to be able to do the work because he was depressed and upset, but when he got home, he was determined, and I was in awe of his determination and how enthusiastic he was to do the work that was required.
Bill Gasiamis 25:29
Was he having emotional outbursts? Did you notice any changes in his emotional expression?
Intro 25:36
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.
Intro 26:08
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, 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.
Jeri Goldstein 26:38
In the beginning, he was crying all the time. And it was super frustrating because he couldn’t even push the call button for the nurses to come. And then when they did come, he couldn’t tell them what he needed. So that was super frustrating for him and difficult. So that’s why we had to advocate a lot to make sure that he was close to the nurse’s station. Instead of being stuck in the room when they first put him all the way down the hall, so that he would be totally alone. So being right in front of the nurse’s station, he could just call out in some way, shape or form.
Jeri Goldstein 26:38
Yeah, that’s a good move. Actually. I like that one. And it’s lovely that they that facilitated that. That’s excellent. Yeah.
Jeri Goldstein 27:40
Yeah, I mean, it was an important thing before we even left the hospital first day they moved him to rehab, we definitely had to make that happen. Because it was so evident that he’s just going to be stuck there.
Bill Gasiamis 28:00
Yeah, that’s really good. I like it, I like that’s just a such a different look as a simple thing, but it’s such a great approach, just to solve a problem, it’s a massive problem, you need a really effective and simple solution. And all it went was just moving his bed, so he can physically express that he needs a little bit of help, because he can’t do this other thing, which is press a button or move himself in the bed to get attention that he needs. It’s genius. It’s so simple, logical and genius. And yet, probably overlooked many times.
Jeri Goldstein 28:42
Yeah. I’m sure. And I can only feel for people who might be in this situation, but that don’t have family members. Or don’t have the kind of support system that thankfully dad had. And being alone in that situation. You can’t express yourself to advocate for yourself. And so you’re relying on the medical professionals to help you in whatever way they can. But if you can’t express yourself, they’re doing things as they know, that need to be done, but not necessarily targeted for that particular person’s needs. So that was challenging, but we’ve had to come up with things on the fly all the time.
Bill Gasiamis 29:41
Yeah, I get to coach people on their recovery journey. And one of the people I’ve helped in the past was probably in their 70s. And at that time, there’s a sense for that particular person there was a sense of, kind of life is almost over and what am I working for? And what am I trying to achieve and overcome? Did you get a sense for your dad what it was that he was working towards, in his early to mid-80s? What is he striving to do? And achieve and get back to or recover for, what was his reason for recovering?
Jeri Goldstein 30:30
Well, mom had passed a number of years prior to him having his stroke. And he had gotten into a new relationship, even at that age with his longtime friend who also had lost her husband. So they were together, and they were having a great time. They were playing bridge, they were good at it, they had a whole group of friends. And dad, he functioned brilliantly, he would learn computer programs, he was helpful to all of his friends and neighbors, he did everything for himself, except cook, cooking, not cooking.
Jeri Goldstein 31:20
But he was really able to do math, to do with finances, to do everything. And so there was a period when the therapies were done, he was home, it was kind of going towards March or April, I was still decided to be there. And I sat him down, and then said that, let’s set your goals for full recovery, what does that look like to you? And what would be helpful for us to know, to help you do so you can reach whatever goals you want.
Jeri Goldstein 32:05
And we just sat there for a good couple of hours and he made a list of the things that he wanted to get back. You know, he wanted to get back use of his right hand, he wanted to get back to doing puzzles in the newspaper, he liked to do the word puzzles in this Sudoku. And he wanted to be able to clearly you want to be able to play bridge with his bridge group. That was a big thing. And he wanted to be able to do math, he wanted to use the computer and use a mouse and things that normally, he wanted to be able to do the dishes again, and iron his clothes.
Jeri Goldstein 32:53
So all the things that were, that make up a life that you do on a daily basis. And these were his goals. These were things that we put on this sheet, this newsprint sheet and magic marker with circles, I call it cluster brainstorming. Or that’s the term for it. And I do this with my clients all the time, like coaching clients and musicians, but I just said, this is something that he could do. And then we hung it on the dining room wall when we were finished with the sheet. So that we could we could see it every day. And he could see it every day.
Jeri Goldstein 33:35
And we would check off the things that were being accomplished. And it gave him a sense of purpose. It gave him a sense that he was accomplishing things that were near and dear to him. You know, it wasn’t like, “Oh, Dad, you should do this”. It was what he decided to do. And I thought that, that was extremely important for him based on knowing who my dad was, and knowing how he was clearly driven to get back to himself.
Bill Gasiamis 34:12
Yeah, that’s inspiring. That’s really good. Because, look, I know I mentioned the person that I was helping was in their 70s. And they were giving up hope. But people do that in their 60s and 50s and 40s. So it’s great, that’s a great example. And if anyone who’s watching or listening feels that that might be part of their heading down the giving up path, there’s really no reason to give up.
Bill Gasiamis 34:41
I mean, you might as well go for gold and have the best experience you can possibly have for the amount of time that you’ve got left. And you don’t know how long that is. It could be short, it could be long. It could be a decade, it could be two. So let’s just say assume that it will be and then go for it.
Jeri Goldstein 35:03
Do the best you can.
Bill Gasiamis 35:05
Yeah. You’re a bit of a, well, I wouldn’t say prolific, but you’ve written a few books and the books that you’ve written around the work that you do in the music industry and helping, performing artists in different ways. And I kind of understand the reason why you wrote those other books. So one of them says, going to have to be your own booking agent. That’s a great thing to sell to a group of musicians is how to get gigs, right, I get that part of solving a problem. And that’s your space. And then the other one is get great gigs. And that’s your podcast. That’s something that you do and help out people with.
Bill Gasiamis 35:52
And then you’ve got the tiny guide to huge success. And 100 Business boosting Hot Tips to ignite your performing career. And that title is the one that I like the best, because I relate to it, it says, the tiny guide to huge success. And that’s really what it is. Success isn’t huge, because you’ve done huge things to get there. It’s huge, because you’ve done a lot of little things to get there.
Jeri Goldstein 36:24
Absolutely. Step by step.
Stroke Dialogues: Conversations With Dad by Jeri Goldstein

Bill Gasiamis 36:25
Yeah. And I get how they all are great things for people in the industry that you’re good at, or that you’re working or that you know, like it’s speaking to your niche. Right. But then you wrote a book about stroke. And I know your dad had a stroke, but it still seems a little bit out of the ordinary that books, Stroke Dialogues: Conversations With Dad. And before I get you to tell me why you wrote the book. Okay, what I want to do is, I want to bring up the copy. And I want to read a little bit of the introduction, or read the first paragraph to the introduction.
Bill Gasiamis 37:07
And it goes, you can never plan for the moment that upends your life. As you know it. Having a stroke is one of those life-changing moments for dad. That moment was terrifying. It set him on a path in search of the man he knew before his stroke. For me, it reconnected me to family and friends. Together, we began a journey, not of our own choosing. And without a roadmap, insight or knowledge.
Bill Gasiamis 37:41
We grew to respect each other’s approach to the challenges ahead. Mostly we lived in a state of patience, and a vision for recovery rooted in optimism, and seeded with hope. That’s a really lovely, succinct way to explain what I would imagine most caregivers, family members, partners of stroke survivors go through.
Bill Gasiamis 38:16
Let’s talk about that in a little bit. But now, why did you write the book? What was the purpose of it? What was the need for you to write this book, was it personal? What was it?
Jeri Goldstein 38:28
Well, based on the way that we were interacting while he was recovering, and the kind of back and forth, instead of playing 21 questions, we were playing 21,000 questions to get to the answer that he was looking for, and many of the conversations were hysterical. They were really funny. I mean, they were funny, not because, oh, poor dad, he can’t express himself.
Jeri Goldstein 39:02
They were funny, because he worked so hard at it, and the back and forth was funny, they were interesting. They were intriguing. And then the final answer was, it’s like, we had no idea where the conversations were going. I mean, he would start a conversation like one two, well, what is that supposed to do? And over the course of many hours, sometimes two or three days, we would get to the answer to the question, and I felt really compelled to just keep track of these, because I felt like they were gems.
Jeri Goldstein 39:46
It just felt like they were an interesting journal of his journey to discover the answer to these crazy questions that he was asking. And along the way, we learned a lot about how to communicate, how to ask a question, how to ask one question at a time instead of, so what do you want to do today? And, what would you like to eat and have bunches of questions in the same sentence,
Bill Gasiamis 40:25
Which is what I do in my podcast when I ask a question.
Jeri Goldstein 40:30
But in his case, he couldn’t separate them out. And so it became really clear, really early on, that we can’t ask questions like that, that we had to ask one question at a time. And then the conversations got to be really long, because one question at a time, one answer a time, they get to be long,
Bill Gasiamis 40:57
Open ended questions or like closed ended questions?
Jeri Goldstein 41:00
Well, they may not even be questions that he was asking, they would be statements like, one, two, okay, now we have to figure out what does one two mean? What does it mean to him? And so, “okay, one, two, what dad”
Bill Gasiamis 41:17
A little bit of decryption that has to happen
Jeri Goldstein 41:21
Totally decryption, and then he would start off another conversation would be once a day, every day, seven days a week. Okay. Now, what? We worked on that for three and a half days, coming up with, well, what does one do once a day, every day, seven days a week, and you come up with all the regular stuff. And then because he couldn’t determine, okay, does have to do with this? And well, he doesn’t know, because he doesn’t know what that is. You know, okay, if it’s this point to the place on your face, that it hurts? Well, you know, is it your nose? Well, he doesn’t know what a nose is. Okay, so you can’t point so capturing those questions and answer periods made me think God, there’s something to this, I gotta write this down, I gotta write down these conversations.
Jeri Goldstein 42:30
So first, I simply started writing down the conversation. And then after a while, I realized, we went through this whole process, there’s something here that might be useful to other people who are going through this process, as well. And so that’s what got me to write connective tissue stuff, to write not only the conversations, but more information, but yet, it’s not a medical book. I mean, I’m coming at this completely from, I love my dad, I wanted to see him get better.
Jeri Goldstein 43:13
So that’s ultimately I started writing it very early on, like, the fall after he had the stroke, I started writing these, remembering these conversations before I forgot them, and asking other people to remember the conversations they had with him that I wasn’t there for. And, doing that helped me to pull together all the main dialogue, but then these other little bits and pieces of dialogue to which seemed important, they seemed important to his recovery, and they seemed important for the possibility that other people might relate. And they might benefit.
Bill Gasiamis 44:04
You work in the field of musicians or performing artists, is any of those performing artists, a comedian?
Jeri Goldstein 44:13
Some, I have some comedian. I mean, I have some comedians that I work with, actually quite a few.
Taking Stroke Lightly
Bill Gasiamis 44:19
Yeah. So one of the things that people get offended about is when somebody makes fun about stroke, or makes a joke about stroke, and I never get how people get offended at anything that a comedian says because you’re going to actually experience a comedian’s view of the world in a way that pokes fun at that thing. And that’s what they do. That’s kind of the stick right? That’s what they do.
Bill Gasiamis 44:59
And I found that stroke’s really funny. There’s a lot of funny things that happened in my three brain hemorrhages, my brain surgery. And one of the funniest things was I felt after surgery. I mean, it was hours after surgery, maybe it was two or three hours after surgery. I’m in recovery, I’ve woken up and all that thing. And I’ve got a fresh, zipper on my head, where they’ve got I don’t know 40 staples or something.
Jeri Goldstein 45:40
The new Frankenstein, right?
Bill Gasiamis 45:41
Yeah, it was pretty cool look for a little while. And then I come out of bed, because they’ve asked me to go to the bathroom. And I didn’t know that my left side didn’t work. And the nurses didn’t know that my left side didn’t work. So I came out of bed on my left side, which is what I normally do. But when I put my foot on the ground, my foot didn’t know that it was on the ground, so I collapsed, it couldn’t hold my weight.
Bill Gasiamis 46:10
And that was scary, but hilarious at the same time, like, you come out of surgery, you can’t walk. And the first thing that happens is you fall straight to the ground, and you’re screaming with your butt hanging out onto the cold floor. And your head, could just as easily have been hit again, which would have been terrible. But now that I reflect on it, and imagine it making my brain leak out and all that kind of stuff. And it’s horrific. But it’s hilarious. I think at the time, it was hilarious. And another thing that happened that was hilarious was I was having my pre surgery, admission checkup. And we were going through everything, all the vitals or the paperwork and all that.
Bill Gasiamis 47:01
And we just finished that and we left. And we walked out the door. And as I walked out the door, I started to get a numb face, my entire face went numb. And I said to my wife, my face is numb, and I can’t feel it. And she goes, let’s go back into the hospital. So we turned around and we go back and we go to emergency but because of the procedures that a hospital works by, of course, I’m not just going straight back into the consulting room, I have to sit at the emergency section. And tell them what’s going on. And they’re gonna go through their whole process, and they just don’t get it.
Bill Gasiamis 47:39
I’m a guy who just walked out of a consultation for surgery tomorrow or next week, or whatever it was. So anyway, and I’m sitting there. And while I was sitting there, there was a mum arguing with her son and her son must have been autistic or something like that. Though communicating fine. But she realized that he had gone to the toilet and not washed his hands. For number twos, and he was sitting next to me. So in my concern about me. And all the problems that I was experiencing physiologically from the stroke or whatever was going on in my head on that moment. It still wasn’t bad enough. It wasn’t that bad that it didn’t occur to me that he might have something on his hand that I don’t want to touch.
Jeri Goldstein 48:43
So you’re thinking that yeah
Bill Gasiamis 48:45
I was afraid that as sick as I was, I still had the ability to get up and just get out of there and go to the other side of the waiting room.
Jeri Goldstein 48:54
That’s so funny.
Bill Gasiamis 48:56
I think it’s hilarious.
Jeri Goldstein 48:57
No, it’s totally hilarious. In fact I have a musician friend who very early in her career, had a stroke, and then wrote a book about all the funny things that happened in the hospital. And had to reteach herself how to play guitar, had to relearn all the music, parts of her career, but that book really captured all of these kinds of incidences that go on, the open gown and all those kinds of things.
Bill Gasiamis 49:37
I know I’ve got a podcast and I interview people and there’s nearly 200 episodes and it can be serious.
Jeri Goldstein 49:46
Yeah, it could be serious. But I mean, you look at how eloquent your speech is now.
Bill Gasiamis 49:52
It’s all good. Everything’s great. And I celebrate all those things. But what’s the thing about it is that I could have a really difficult time interviewing every single person about all the terrible things that happened during stroke and how bad it was, and all that kind of stuff. And it’s like, what’s the point of focusing all your energy on how terrible and how difficult it all was? There’s a lot of things that we could look at, if we look for the Silver Linings that we could reflect on, allow us to just ease the stress and the tension a little bit about all the stuff.
Jeri Goldstein 50:27
Which I think is why this made so much sense to me, is because these conversations were hilarious, you know, we would just be rolling after finding the answers. And going through all that we went through to get to the answers. And I really felt like, there needs to be lightness in this, you know, like, you can have so many, okay, do this kind of informational books.
Jeri Goldstein 51:02
But I felt like why not? Why not capture this? Why not share this to perhaps, in some way, lighten the load for some of the people that are thinking, Oh, my God, this is the end of the world as we know it. And so, that’s part of the big reason why I felt like, why not? If one person gets something out of it, I did my job.
Bill Gasiamis 51:36
It helped you dealing with the seriousness of your dad’s stroke, right?
Jeri Goldstein 51:40
Absolutely. I mean, the other piece of the puzzle that became very evident to me was having positivity, being positive no matter what was going on, with any kind of depression or negativity that I felt me and the people around dad, friends, family, we all had to come at everything with being positive, upbeat, to comfort him, to calm him, to make it be more likely that he would continue to recover, as opposed to being depressed by his depression.
Jeri Goldstein 52:31
So I felt like that was so important. I had come up with this, this little catchphrase for him in the hospital. I call it the five P’s, when you’re positive, and patient, what is it? I remember, it was like, so long ago that I couldn’t remember what it was. And I had to, like, write it down, because it was a cool thing that got him out of his stuff. And I felt like that was important. Okay, when you’re positive and patient, when you persevere and practice then anything is possible.
Bill Gasiamis 53:22
That’s terrible thing to say to a stroke survivor who can’t talk. It’s a tongue twister.
Jeri Goldstein 53:27
I know. It’s a tongue twister. And that’s why I did it. Because I was trying to get him to practice his P’s
Bill Gasiamis 53:36
I’m gonna have to write it down.
Jeri Goldstein 53:38
Okay, when you’re positive and patient, when you persevere and practice, then anything is possible.
Bill Gasiamis 53:51
Fantastic. All right. I love that.
Jeri Goldstein 53:55
Go for it, pass it around, but I felt like anytime that I could come up with things that broke his concentration on oh my god, I can’t believe I’m in this place. So I would always come up with these kinds of fun things and play games and try as much as possible to distract him from his stuff to get them to work and to see that maybe it’s not so bad, and look, we’re here, we’re working at it, and having my dog there was a major benefit for him.
Jeri Goldstein 54:43
He loved the dog and I would as often as we could bring the dog to the hospital during his rehab. Couldn’t go in because he wasn’t a service dog even though he kind of was a self appointed therapy dog. But we can go in so dad would meet us, downstairs outside when he was able to do that in the wheelchair. And it just brightened his day all the time. And it was also a really great thing to say he respected the dog, sometimes more than he respected the people.
Jeri Goldstein 55:18
So like we would want to leave, to go home, to eat, or to go to sleep. As long as they said, Oh, we have to walk the dog, then it was okay to leave. But it was just like, I have to go home because I’m tired and I need sleep or I need to eat. He would try to pull up. We always caught him pulling a 8:55 thing where at 8:55, he would ask a big question that would require much time to answer the question. So we couldn’t leave until we figured that out.
Bill Gasiamis 55:58
Wow. See, I like the way that you scammed him out of being there for a bit longer. Nonetheless, though, I’m not sure.
Jeri Goldstein 56:09
He scammed us first for three nights, he figured once he figured out how to tell time, he got it. And again, he would watch the clock is like 8:45 8:50 8:55, boom, here comes the big question. That’s like, “what is the meaning of life” kind of a question. And it took us three nights to figure out oh, man who did it again?
Self Care Awareness
Bill Gasiamis 56:36
I think the other thing that demonstrates is the importance for you to actually take care of yourself, because it doesn’t matter how unwell your dad is, if you’re not taking care of yourself, and you become unwell. There’s no point having two members of the family unwell. And it’s no point, you feeling guilty about taking care of yourself, you’ve got to take care of yourself. And that stroke survivors has to allow other people to take care of themselves and have time to themselves. Because it’s both your journeys, but it’s not your burden.
Jeri Goldstein 57:13
Right. Yeah. I mean, but for the survivor, they might not be thinking that way.
Bill Gasiamis 57:20
Yeah. And they might not have the capacity to think that way either.
Jeri Goldstein 57:23
Exactly. I’m sure that that’s mostly the case. So it was really important for me, being sort of a health nut, to make sure that I got what I needed in terms of exercise, being outside time away, you know, the ability to cook the foods that were going to be healthy for him and healthy for me, and be able to manage my minimal business at the time, but because it was remote and internet based, I could do it anywhere.
Jeri Goldstein 58:01
But it was very important for self care. And I think that that’s a big thing to talk to people about. Taking care of yourself being mentally, spiritually emotionally able to handle the situation because not every situation is going to be as handleable as ours was, many are going to be more difficult.
Bill Gasiamis 58:29
Did you put your life on hold from where you were living to stay with your dad? Why did you hang out and plant yourself there?
Jeri Goldstein 58:39
Yeah. That’s why I took the dog and half of my kitchen, all the things that I thought I could fit in the car just in case I had to stay. Well, rather than answering 15 phone calls in every day from home to try to solve problems. I realized it was just gonna be better for me to be there. I was able to do it. I had my moveable business that I could do anywhere. And I just figured, you know, my house and the old things that I had back in Virginia could be managed long distance. And it was better to take care of business for him.
Jeri Goldstein 59:32
Being there, taking care of the aide managing the household, managing his business, managing my business, it was so much easier to just be there with him to do it. And he appreciated it immensely. Like when I told him that I was going to stay, so I stayed from November to June then I did go back to Virginia for a couple of months to take care of my house and renovating something that I had to do for renting my apartment again.
Jeri Goldstein 1:00:13
And then I came back in November and then just stayed for the next couple of years. Until he passed, but then I just moved down here in preparation to stay with him while he was recovering, and then I moved down here and then a month later, he passed.
Bill Gasiamis 1:00:35
Well, that’s inconvenient.
Jeri Goldstein 1:00:36
It was totally inconvenient.
Bill Gasiamis 1:00:40
What ended up happening? Why did he passed?
Jeri Goldstein 1:00:43
Because of end stage renal disease. Kidney failure. Which was something that he had battled even before the stroke, but he was recovering from the stroke really nicely. I mean, he was back able to play bridge and was as good or better than his other friends. So that was a big accomplishment for him. Then all the other health stuff got in the way.
Bill Gasiamis 1:01:16
Yeah, they tend to catch up with you sometimes. And it’s great that he was able to have a reasonable quality of life, for the amount of time that he had after the stroke, when he had that little win, and that little battle. And, he overcome some things. And he gave you and other people around him a good example of how one should approach these things or tackle these things. So everything about it is really positive and really a good outcome. And it’s worth the fight. Isn’t it? It doesn’t matter what age you are.
Jeri Goldstein 1:01:55
That’s the point, I think, it doesn’t matter, why give up just because you’re older, there’s still amazing things that one could be doing, who knew that, you’re gonna find love again, at 83 84? How do you know that, you don’t know until just happens. So it was worth all of the effort that we put into helping him discover ways of, of conquering his challenges.
Bill Gasiamis 1:02:33
Yeah. As we wrap up, I haven’t read the book, because I get a lot of books, people send a lot of books across to me, and I don’t have time. But I do love going through them and familiarizing myself a little bit with them. And I got stopped at chapter six, the big bird that jumps up and down. Just give me a bit of an understanding of what I’m going to find when I read that chapter.
Jeri Goldstein 1:03:03
Okay, well, sometimes I would have lunch with Dad during his break in the hospital. And where the hospital was, was down the block from where I was going to get my takeout for lunch, and I was going to Chipotle. The one thing he didn’t lose was his sense of direction. So I would tell him where I was going. He could not remember names of anything.
Jeri Goldstein 1:03:34
And so this conversation happens between a nurse Estelle, his girlfriend and dad saying, Where was I going? What was I doing? And so he was using landmarks. And the landmark he was using was the Outback Steakhouse. And he thought, I don’t know if I should give it away, or if you should just read it.
Bill Gasiamis 1:04:12
It’s up to you. It’s only one chapter out of all of them.
Jeri Goldstein 1:04:16
It’s just because it’s too funny. You know?
Bill Gasiamis 1:04:22
Yeah. Just one, just go for it. Let’s do it.
Big Bird Story – Jeri Goldstein
Jeri Goldstein 1:04:25
All right. One day, I planned my lunch visit around an errand to the pet store to pick up some dog food and other supplies. The pet store was a couple of miles down the road from the hospital. So I stopped at Chipotle for my takeout. I told him where I was going and mentioned the name of the restaurant and what kind of food they served. He lost a number of things with his stroke, but not his sense of direction and where things were. He knew exactly where I was going and what other stores or restaurants were in the general area. He just couldn’t remember their names.
Jeri Goldstein 1:05:08
Always excited about my visits and activities he would tell his therapist, staff, nurses and other visitors what I was up to and when I would be coming. On this day, he tried to describe my whereabouts and activities in the following manner to a staff member and Estelle. She’s coming for lunch. “Who’s coming for lunch?” My daughter, she had to get dog food. “Where did she go?” Down the street. Then she’s getting her lunch. “Where is she getting lunch?” Down the street. You know that place? “Which one?” It’s near that other restaurant? “Which one?” It’s near the pet food store. It’s not from here.
Jeri Goldstein 1:05:50
“What do you mean it’s not from here?” It’s from someplace else. “You mean the restaurant is from someplace else?” Yes. She’s not going there. She’s just going near there. “You mean she’s not going to this place for her food?” It’s just near this place. Yes. But I don’t remember her place. My name’s My name’s I don’t remember names. This other place down the block has a big bird. “What kind of Big Bird? Is it outside?” No, it’s not outside. It comes from the place where they have big birds. “What kind of place has big birds? How big?” Very big. They jump up and down.
Jeri Goldstein 1:06:33
You know, the bird that jumps up and down. They carry their babies in their bellies. “The bird that carries babies in its belly and jumps up and down? What kind of bird is that?” Very big. Only in that place. Never here, only in that place. “Okay, the restaurant has a big bird that jumps up and down and carries its baby in its belly. Well, the restaurant come from the same place the big bird comes from. Do you mean a kangaroo? A kangaroo is not a big bird. But it does carry its baby in its belly.” Yes. A kangaroo. That’s not a bird? “No, that’s not a bird. Do you mean Australia? Kangaroos are in Australia.” Yes, Australia. That’s the place. That’s the place the restaurant comes from.
Jeri Goldstein 1:07:27
“What restaurant comes from Australia?” You know they have onions. We’ve eaten there a lot. Lots of steak. “Oh, I know. You mean outback.” Yes, that’s the place that comes from Australia. But she’s not getting lunch there. “Then where is she getting lunch?” Oh, I can’t remember the name. But it’s near Outback? Oy vey, all of that and she’s still not even going there for her lunch.
Jeri Goldstein 1:07:56
Well, we’ll just have to ask her where she went when she gets back. When I returned. Estelle had left and dad and I were all alone to have lunch. “Where did you get lunch?” I went to Chipotle. “Chipo-” Chipotle dad. It’s near the pet food store.
Jeri Goldstein 1:08:15
He tried to say it but had a hard time and didn’t try for very long. But when he tried to explain the recent conversation about the big bird that jumps up and down, we had to rehash most of the conversation, since he had already forgotten Outback. We went through a few minutes of the jumping bird story and when he mentioned that the bird carries its baby in its belly, I chimed in immediately. “Do you mean a kangaroo? Do you mean Outback Steakhouse?”, to his great relief and with a smirk on his face his face he said, “Oh yes baby, yes, outback.”
Jeri Goldstein 1:08:54
I understood that he was using landmarks and he knew to try to describe where he had gone for my steak, my takeout. We both laughed hard when I realized what a crazy conversation this must have been hearing about it later from Estelle I was able to capture the details and we were all hysterical at the retelling, Estelle said that he would not let it go. And he was determined to make his point until someone recognized Outback. I think for dad from then on. Every time he passed an Outback Steakhouse. He thought of that big bird that jumps up and down and remembered his crazy conversation to make himself understood.
Bill Gasiamis 1:09:39
Yeah, that’s brilliant. Absolutely brilliant. So when I first read the chapter headline, I thought it was big bird from Sesame Street. For sure he was going to be big bird and then to see the big bird turned into a kangaroo. And how that was the attempt to describe the Outback, which is a very common thing that we say about our desert, in the middle of our country. Here. It’s just amazing that somehow, even though that seems like a ridiculous way to get to that outcome, it is a great example of how outcomes can be got to, and the importance of the role that the person is playing that’s listening to that conversation and trying to facilitate the memory, or the answer to come right out.
Jeri Goldstein 1:10:35
This is what these conversations are like, similar to that. It starts off with something, and you have no idea where it’s going. And then when you get to the end, you go, Oh, my God, it’s like, I can’t believe that that’s that it started with something so crazy like that.
Bill Gasiamis 1:10:54
Yeah, I think this is going to make a big difference and help a lot of people understand aphasia, and understand what people go through to get to be able to communicate and to share their feelings, thoughts, and whatever it is that they need to express. So that’s where I see it doing a lot of amazing work and stroke survivors that have been through it will also relate to a lot and be able to appreciate.
Jeri Goldstein 1:11:22
I’ll bet, because they know what they were holding in their head and how they were, hard at work trying to make themselves understood if they were going through aphasia. So I’m hoping, I thought I picked out that story to read. And then I went online to just check, to see where is Outback actually from? And it’s from right here in Florida. It’s not from Australia at all.
Bill Gasiamis 1:11:57
But he associates the name to Australia.
Jeri Goldstein 1:12:01
Well, I mean, well, it’s like Australian-inspired food.
Bill Gasiamis 1:12:06
Yeah. And he went all around the world to get that answer. Just for something that was down the road.
Jeri Goldstein 1:12:15
That’s right, exactly.
Bill Gasiamis 1:12:21
I really appreciate you reaching out Jeri and sharing your story and letting us know about the book, I think it is going to be something that does shed some light on a difficult time that people go through and then makes it a little bit funny and allows people to see the possibility for humor, and to embrace it, and to feel good about having a laugh about some really difficult times. And I would just like to ask you, if people wanted to get in touch with you, or find a copy of the book, when it’s available? Where would they go?
Jeri Goldstein 1:12:59
Well, it will be on Amazon, and it will be on Amazon Australia, as well as every Amazon wherever it is. And they can also go right to strokedialogues.com, my website and there’ll be links to get either the PDF, and eventually I’m going to do an audio version. So hopefully, I keep procrastinating on that one. But I’ve got my little studio set up in my closet right next to me here and I’ve got that microphone that you’ve got there. And I’m all ready to go. I just gotta find quiet space when they’re not cutting trees in front of my answer.
Bill Gasiamis 1:13:44
Which is every single moment you sit down to record something.
Jeri Goldstein 1:13:48
Absolutely, but this is a brilliant time, at 10:30 at night, my time, there’s nobody’s doing any work outside. It’s great.
Bill Gasiamis 1:13:57
Well, there you go. Now you know when to sit down and record.
Jeri Goldstein 1:14:01
Now that I know that I can make it to this time, and be lively and bubbly. I can probably go ahead and do it now.
Bill Gasiamis 1:14:09
Yeah, well done. Well, thank you so much for being on the podcast.
Jeri Goldstein 1:14:12
Thank you so much. And thanks for doing the podcast after your situation and thinking hey, I couldn’t talk, I couldn’t think, I think I’ll do a podcast. That’s pretty amazing thing to come to that
Bill Gasiamis 1:14:30
It was a ridiculous idea. I don’t know why I even thought of it or how I got to it. I just felt like I needed to connect with people and I used as an excuse to talk about stroke more often. And it was just like, it was about me at the beginning and then it really rapidly changed and it’s still about me but about everybody else and all that.
Jeri Goldstein 1:14:55
Brilliant. It’s brilliant. I mean I listened to many of your episode. And each one really touches, obviously on different topics with different people’s experiences. But your ability to pull stuff out of people is brilliant and sensitive and lovely, quite lovely.
Bill Gasiamis 1:15:22
Thank you. It means a lot to me, I get a lot out of it. And I always love it when people reach out to me and say they want to be on the podcast that’s even better than me trying to drag them.
Jeri Goldstein 1:15:36
That’s great. I don’t know how I came to it. But I was looking up all kinds of resources so that I can get the word out and so that I can hopefully make a difference. And yours was one of the first ones that popped up, and I loved it. And so I just started listening and paying attention to what you’re doing. And it was brilliant.
Bill Gasiamis 1:16:03
Thank you. Thank you so much.
Jeri Goldstein 1:16:04
You bet. Thank you. Thank you so much for having me on.
Bill Gasiamis 1:16:08
Well, thanks for joining us on today’s episode, please comment, like and share this episode. If you are watching on YouTube, subscribe. Hit the notification bell to get updates of new episodes as they become available. The more interactions with an episode, the more the algorithm will push the episode out to more people that need to see this episode, and the greater the impact that interviews will make. Thanks again for being here and listening. I really appreciate you and I look forward to seeing you on the next episode.
Intro 1:16:42
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1 hr 19 min