Recovery After Stroke

By Recovery After StrokeEducation

Recovery After Stroke episodes

August 31, 2020 Carotid Artery Dissection Recovery – Emily Hoffman
Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day.
Socials: www.instagram.com/emilybemily1014/
Episode 28. Running After Stroke – Donna Campisi
Episode 85. Carotid Artery Dissection – Marcia Moran
Episode 106. Weight Training After Stroke – Kelly Studebaker
Highlights:
01:04 Introduction
03:24 The Signs of Stroke
09:38 Stroke caused by Carotid Artery Dissection
13:44 My Stroke of Insight
23:19 Stroke recovery timeline
32:57 Proprioception issues
41:12 The stroke carer
44:36 Recovery Awareness
53:14 Taking responsibility for your recovery
Transcription:
Bill 0:00
Are you aware of how you’ve taken your recovery? And you’re doing this physical part, you’re doing this cognitive part where you talk about your goals, your process, and then you do this other part, which is in pictures and images. And to the point where you’ve got the Emily Strikes Back on your T-shirt, are you aware of like how imagery is important in supporting recovery as well as the words and the actions?
Emily Hoffman 0:32
Absolutely. The reason why he started the Instagram page was so I could look back at my progress so that when at the end of the day when he came from after work and was reading me to sleep at night, he said, What did you do today? How was your day? And I would say, Well, I did this thing when I couldn’t do this, and I couldn’t do this. And the keyword is always yet I couldn’t do this thing yet.
Intro 0:56
This is the recovery after stroke podcast with Bill Gasiamis. Helping you navigate recovery after stroke.
Introduction

Bill 1:04
Bill from recoveryafterstroke.com This is Episode 112 and my guest today is Emily Hoffman. Emily experienced a stroke caused by a carotid artery dissection in May of 2019 and has been on the road to recovery ever since.
Bill 1:20
Has your recovery had to take a backseat due to COVID 19 restrictions. If you’re feeling a little disconnected from your support team due to restrictions from COVID-19, shutdowns, and lockdowns, and you’re looking for more support, you may want to consider recovery after stroke coaching.
Bill 1:36
People that have already signed up for recovery after stroke coaching get 12 months of unlimited access, a private one on one coaching thread with myself via a private forum, Inside the coaching area. You have instant access to online training materials that can only be accessed by coaching clients.
Bill 1:54
You get access to courses, monthly training, and challenges made by stroke survivors for other stroke survivors. You also get expert interviews that are only available to coaching clients. And mp3s you can download for listening on the go.
Bill 2:08
All training are transcribed to PDF. For people that prefer to read and take notes or highlight important bits for reviewing at a later time. You also get two live hour-long coaching calls per month, where you can ask questions and get answers. You can access the site 24 hours a day, seven days a week, and complete training at your own pace without ever having to leave the comfort of your own home.
Bill 2:31
To find out more simply go to recoveryafterstroke.com/coaching. And now it’s on the show. Emily Hoffman, welcome to the podcast.
Emily Hoffman 2:41
Thank you, Bill. I am honored to be here.
Bill 2:44
Thank you for being here. It’s so good to have you here. All the way from New York, New York,
Emily Hoffman 2:52
Brooklyn, New York. Not bad.
Bill 2:55
Do you live near a place called Clifton Hills or Clifton Hill?
Emily Hoffman 2:59
We live in a neighborhood called Clinton Hill. Close, you’re very close.
Bill 3:06
When I read that, I thought it was Clifton Hill, because there’s a Clifton Hill near my place. And I thought, well, we both live near Clifton Hill.
Emily Hoffman 3:13
We actually live in Australia in Clifton Hill. fooled you. Haha.
Bill 3:19
Hey, Emily, tell us a little bit about what happened to you.
The Signs of stroke
Emily Hoffman 3:25
I was at work one day on Friday, May 10, 2019. I don’t know what the date is Friday, May 10, 2019. I had started a new job and I was literally on the third day of my onboarding. I started the new job on Tuesday, the seventh on Friday the 10th I was at work doing an onboarding course I started to get a horrible migraine.
Emily Hoffman 3:49
And I have had migraines since I was a kid since I was about six years old. It was another migraine-like any other I texted Matt, I said I’m going home from work early. I have a horrible headache. And he said, Do you want me to come home early from work and look after you? I was like, What are you talking about? It’s a migraine.
Emily Hoffman 4:06
You see me have a million of them. I’m going to go to bed. I’m going to take my medicine. I’m going to go to bed. I’m going to go to sleep, turn the air conditioning on. I’m going to sleep the rest of it. What are you going to do sit next to me in the bed and like brush my hair off my face?
Bill 4:18
That’d be romantic though.
Emily Hoffman 4:20
Yeah. So I said don’t be silly. He had plans to go out with his cousin that night. I said go out. Have fun. Go to the show. Have a good time. I left work at about two o’clock I took the train home. I got home at about four o’clock I walked home. So no stroke yet. Other than the headache, I was totally fine. Everything worked normally.
Emily Hoffman 4:45
This is the this is a gross part. We’ve already talked gross things but it gets grosser, when i get migraines I throw up. So I have a designated puke bowl, and I took my puke bowl into the bedroom and went to sleep. That was the end of it I went to sleep and managed to fill the puke bowl in the interim, woke up sometime around six o’clock I think I don’t remember looking at the clock but my memory of what it looked like light wise outside it was about six o’clock pm.
Emily Hoffman 5:19
So I’ve been home for a couple of hours, looked at the bowl and said oh, that’s disgusting. I can’t possibly have Matt come home and find me in bed with a bowl full of puke next to me. That’s awful. So I got up I carried the bowl to the bathroom, still no stroke carried the bowl to the bathroom, dumped it flush it went back to bed.
Emily Hoffman 5:38
And next thing I know he got home from the show with his cousin like 1 am I think something like that. Tried to wake me up. And I had been I guess continuing to throw up while I was asleep and when I get migraines I also go into like a cold sweat. I was drenched and had been throwing and you woke me up like clearly that’s not normal.
Emily Hoffman 6:02
That’s not a normal thing. You don’t find somebody asleep in bed with vomit in a cold sweat. It’s disgusting. I’m sorry. Sorry listeners. That’s disgusting. He woke me up and his cousin luckily he worked in hospitals. So he saw me and he said, something’s not right. You gotta call 911 they call 911.
Emily Hoffman 6:27
He sat me up to get dressed, I sat up and I reached forward with my arm to grab my leg to help him help me get dressed, couldn’t reach my leg, my whole left side was totally loose. And that was when he knew something is very wrong here, the ambulance came the EMTs put me on the stretcher, wheeled me out to the lobby of our building.
Emily Hoffman 6:51
And there’s like four stairs to go down. I remembered being wheeled through our living room. We have two cats and I just cleaned out their litter boxes. I didn’t throw the bag full of litter away. And I remember being wheeled through the living room and thinking, Oh, this is disgusting. There’s a bag full of dirty cat litter on the floor. I can’t believe there are people in my home and I left that here. That’s disgusting.
Emily Hoffman 7:14
This is what I remember. And I remember going to clunk, clunk clunk down the stairs in the lobby. And being in the ambulance, there’s a highway in New York the FDR, the Franklin Delano Roosevelt highway that takes you up the East Side of Manhattan Island. And it’s very bumpy it’s notoriously bumpy. And it was so bumpy that I remember waking up and asking Matt are they doing a CT in the ambulance I thought it was in like a like an ambulance with a CT because it was so bumpy.
Emily Hoffman 7:52
And next thing I remember is waking up in the hospital bed a couple of days later. With a horrible, horrible headache again, they had shaved my head. And because there was so much swelling in my brain, I got a Hemicraniectomy that took up the right side of my skull. And I had obviously when they mess with your skull, you’re going to get a little bit of a headache.
Emily Hoffman 8:16
So I had a horrible, horrible headache all over again. And I remember, I woke up and it was not one of those moments like in a movie where you wake up and go, why am I what am I doing here? How did I get here? There’s nothing like I wish it was dramatic and interesting like that.
Emily Hoffman 8:32
I woke up and that was it. And I was in the hospital bed and there was people around me and I had a horrible bandage around my head and my hair. I had just finished growing my hair out from having short hair the year before, my hair was finally long again. And I was so excited that it was finally long again. Then they shaved it all off. And now I’m stuck with this thing now.
Bill 8:54
And that’s probably not the worst thing you’re stuck with.
Emily Hoffman 8:57
No, it’s not the worst thing I’m stuck with if I have to choose the hair is good. And I was in acute rehab for the first two months and then I was from acute rehab. I went to subacute. And the subacute rehab was the next step before going home. So I had two months in acute and then another two months in subacute. So this all happened in May I came home September 18, 2019. So I’m approaching the year of being home the year mark of being home.
Bill 9:34
Wow. What was the underlying cause of the stroke?
Stroke caused by Carotid Artery Dissection

Emily Hoffman 9:38
It was a carotid dissection or right side of carotid dissection. But it was interesting. I listened to the other episode of the other woman who had a carotid dissection also months ago, and I was really interesting to hear that somebody else I had because you know, I’ve speak with lots of stroke survivors. The Instagram page has put us in touch with other people. She was the first person I heard of who also had a carotid dissection?
Bill 10:02
Yeah, I think that was who was that?
Emily Hoffman 10:06
I forgot Marcy. Maybe.
Bill 10:08
Marcia Moran?
Emily Hoffman 10:09
Yes. Marcia Moran. That’s the one.
Bill 10:12
Yeah. So that is quite common. I met people who have had carotid artery dissections nice down low in their neck. And as a result of that, that’s caused stroke. And that person who’s one of my son’s friends had surgery to repair both carotid arteries.
Emily Hoffman 10:36
Luckily, I did not have that. That’s awful. That’s even worse.
Bill 10:40
Yeah, on each side, but he didn’t actually end up having the kind of strike that you had because it somehow didn’t get to his brain that dramatically. It didn’t cause a problem up there that dramatically so he was up and about and doing really well, quite quickly. So it’s not uncommon. But what’s fascinating to me is the amount of different ways people can get to have an experience with a stroke.
Bill 11:07
That just completely blows me away. Because if I’ve ever heard of somebody having a stroke, it’s always been an ischemic stroke. And very rarely did I hear about people experiencing brain hemorrhages. And then very rare that I hear about people having a stroke due to a hole in the heart, which is called the Patent Foramen Ovale, which creates incorrect blood flow and then that causes a stroke. It’s just so many many different ways that people get there. So you wake up in the hospital and it’s not a dramatic awakening, but Matt’s around. Are you wondering at least like what happened like how did I get here?
Emily Hoffman 11:51
I honestly don’t remember that moment whatsoever. I remember that my sister lives in Spain. My sisters in Spain. My mother goes once a year. for about a month or two to spend the summer with my sister in Spain, and my mother was this was the month that my mother was in Spain with my sister. I vaguely remember my sister was there when I woke up.
Emily Hoffman 12:13
I vaguely remember being on the phone with my mother while she was in Spain, and her saying, Well, I’m coming home and I said, Don’t come home. It’s just a stroke. I’m not dead. It’s fine. It’s just a stroke. I’m not dead. And she told me that I did that but even before she told me I have really this very vague memory of doing that. saying, I’m not dead. It’s just a stroke. Fine, so you don’t have to come home.
Bill 12:37
How did the conversation with Matt go?
Emily Hoffman 12:43
I don’t remember it was just kind of it just sort of like there was never a conversation about it. What are you going to have a conversation about? Well, what do we do now he just kind of swooped in and just kind of took control the situation, kind of saw what needed to be done and started doing it.
Bill 13:07
Yeah, that’s common. I mean, and I can relate to that because we, Christine and I, we didn’t speak about anything, either. It was kind of, okay. This is happening or this is what I need to do today, I need to go pick up the kids need to go do the shopping, and it go see my mum and dad.
Bill 13:21
And I’ll come back and see you in a little while. And then she’ll come back and see me then she had to go to work and life just went on. And there was this little bit of added complexity that we didn’t know how it was going to unfold. And she basically did exactly what Matt did. She just kept going and kept doing whatever he needed to be done.
My Stroke of Insight

Emily Hoffman 13:44
He somehow managed to continue working full time and be with me every day at the hospital. And the entire time I was in the hospital. He was there every single day. When I was in the acute rehab He would come after work every day stay there until 11 or 12 o’clock you would read to me. As I went to bed he would read to me we read my stroke of insight.
Bill 14:09
Jill Bolte Taylor.
Emily Hoffman 14:11
Yes, so good. So good.
Bill 14:13
Amazing book, one of my favorite books. I’ve tried to get her on the show. I’ve tried so many times. It’s so hard.
Emily Hoffman 14:22
I’m sure. A friend of mine actually a former coworker of mine just had a stroke last week. I got her a copy of it.
Bill 14:30
Yeah, It’s one of the best books because it gives that insight from a neuroscientists perspective, as well as a stroke survivors perspective and they come together and she’s our voices how I sort of describe it in that she gives the medical people an unbelievable understanding in a medical kind of way. What stroke survivors go through and we don’t have that often.
Emily Hoffman 14:58
I was almost a little jealous of her experience. I was like, I want to know, the way she described the filing cabinet getting washed away, and it just being out of reach. I was like, I want to know what that was like, why didn’t I get to I just went to sleep and woke up. I got cheated.
Bill 15:17
Yeah, she had like a LSD moment there. It sounds like yeah, it’s describing a more of a kind of out of body experience with her having an awareness of what was going wrong with her brain at the same time that it was going wrong. And also not knowing a lot of the things that were going wrong. But having this awareness, which is just so strange, bizarre, and beautiful, and amazing, and horrible, and terrific, all at the same time.
Emily Hoffman 15:48
Exactly. Exactly. That’s the experience. Horrible and terrific. That’s a perfect way to sum it up. It’s horrible and terrific. Yeah. It’s horrible that this is all happening to any of us. But it’s terrific that we survived it, though. You know, many people don’t survive this. But we survived it for whatever reason, and we keep going and we make the best of it.
Bill 16:11
Yeah. What was it like when you started to get beyond the first few weeks of recovery and realized, there’s certain things you can’t do? How did that affect your psychology?
Emily Hoffman 16:24
That’s exactly what my friend asked me the other day when I went to see her on Friday. That’s the exact question. She’s struggling right now. She said, How are you doing psychologically? It’s not an easy thing. As somebody, I’m a personal trainer. My life is my body and being fit and sporty. Not that people’s lives aren’t their bodies outside of personal trainers, but no, my career is my body.
Emily Hoffman 16:50
I have to be fit, I have to be strong, and I’m used to being fit and strong. And all of a sudden, I’m not able to do the stuff that I was used to doing and that’s been a strange experience is like trying to figure out if I can’t do that stuff, then what am I? Who am I? And how do I get strong in a different way? If I can’t do those workouts, what can I do to be strong?
Emily Hoffman 17:20
Like what is the driving force? That’s kind of what I had to realize, what is the driving force behind who I am, let’s say as a trainer, as an athlete. And the whole point was always to be the best version of what I always tell my clients is I’m going to teach you to be the best version of yourself that you’re able to be. So I got to teach myself to be the best version of myself that I can be. That doesn’t mean deadlifting 180 pounds that doesn’t mean squatting my body weight. It means taking what I’ve got going on now and making the best of it.
Bill 17:54
Yeah, that’s pretty fair. Kelly Studebaker is somebody I interviewed for Episode 107. And she started weight training after the stroke. And to the extent that she wanted to be a powerlifter, not just a regular kind of, I’m gonna push a couple of weights up, she wanted to do powerlifting.
Emily Hoffman 18:12
I used to power lift I loved it.
Bill 18:14
Yeah. And she got to the point where she was able to with one side of her body, do all these amazing things and lift really heavyweight. And you can see one side of her body is really jacked and muscular. And it’s huge. It’s a powerlifter’s body. So she moved into that space afterward, just because I think she was challenged by somebody in a gym, somebody in the gym said to her look, I think you can do powerlifting if you want to, you just have to adapt like you’re saying, and be a different version of yourself and use what you have got, instead of thinking about what you can’t do and what you haven’t got.
Bill 18:49
And it took her five years to get to that point where she was able to, I think compete or be in a position where she was able to do some type of competition. And that’s really what it’s about, isn’t it? It’s about putting as much time and effort in into something that you’re passionate about to get a result, a different result. But still to get a result.
Emily Hoffman 19:11
It never even occurred to me to do it. one-sided. That’s embarrassing that it has never occurred to me, but it should happen. It never did.
Bill 19:21
So you’ve got this opportunity to really learn from stroke. And I know this is almost painfully annoying to hear, but what has you know, for some people that is, what are some of the lessons that you’ve learned from your experience? And I’m not talking about Emily needs to behave herself or not those kind of lessons, you know. life lessons.
Emily Hoffman 19:46
I never had one of those. I never had like a post stroke epiphany of, I could be this person now or this is my life lesson I’ve learned I haven’t had one of those moments really, What I have learned is I need to be patient with myself. And that I need to wanting to set realistic goals. And the other is that when a goal is set for me, I do whatever it takes to get to that goal.
Emily Hoffman 20:26
My physiatrist said that she wanted me out of my wheelchair by the end of February. So February 28. I sat in the chair and never sat in again. My next goal is to get rid of my cane by my birthday on the 14th of October. I see no reason why I won’t be there. Mostly I say my life lesson is that I am very goal-oriented.
Bill 20:52
And the goal is something that you set at quite a distance into the future does that timeline that somebody sets for you help you? What kind of goals work for you? Because for me, if somebody gave me a timeline, it would probably not work for me in that if I didn’t make it by the timeline, it would upset me or frustrate me or whatever. What kind of goals work best for you?
Emily Hoffman 21:19
Um Well, I think I trust people I trust the experts. I’m only an expert in a very small area of the fitness world but when it comes to physical recovery, it’s a different thing. You know, being a physical therapist and being a personal trainer are two very different things. I’m sort of in the same genre, but different. So if the experts say we’re going to get you to this place by this timeframe. Of course, if you think I can. Of course, I can.
Bill 22:03
If the expert said that you can’t do something, how would you respond to that?
Emily Hoffman 22:09
I’d say you clearly don’t know me. I have my old boss actually, it’s funny. So I went back to work sort of went back to work. I’m teaching an online polities class once a week. So going back to work, it’s not in the studio, but it’s still going back to work.
Emily Hoffman 22:28
And I was talking to her when I was just about to go back to work and was telling her about some workouts I had been doing, workouts I wanted to get back to doing and she said, be careful. Don’t overdo it. And I said, have you ever met me? She said that’s exactly why I’m telling you to take it easy and be careful. So if you if you know me, you know I don’t do anything half-assed. Sorry, to all the children listening.
Bill 23:00
Yeah, no children are listening. It’s all good. So what you’re saying is that once you’ve decided on a goal, you’re pretty much going after it no matter what.
Emily Hoffman 23:11
Yep, pretty locked in on it. That’s once it’s set, once I’ve decided I’m gonna do it, it happens.
Stroke recovery timeline
Bill 23:19
Yeah, that’s a pretty cool thing and the timeline doesn’t seem to bother you. It doesn’t seem to be an issue about time. So it’s great to have a timeline, but then not necessarily bother you. If you don’t get to that time.
Emily Hoffman 23:35
Right. I’m not going to be horribly devastated if I don’t get to my birthday and I’m still using my cane. Or if I do get to my birthday, and I’m still using my cane, I’m not going to be crushed or devastated. I’m just gonna say all right, well, I’ll figure it out. I’ll do it again later. I’ll get rid of it another time.
Bill 23:52
Yeah. Recently you made a post where you walked nearly a mile.
Emily Hoffman 24:00
Yes. Without the cane.
Bill 24:01
How long has it taken you to get to that point where you can walk almost a mile without a cane?
Emily 24:07
When did my no-cane journey start? I think probably in the spring still, we’re deep into August and we’re deep into summer in New York. So I think probably maybe in March or April, I did my first couple of steps without the cane. I called it Franken steps. I looked ridiculous. So I did a little Franken steps tours around the neighborhood every like, you know, a couple of blocks.
Emily Hoffman 24:41
And then I’d rest, I was exhausted. One block and I would rest. So I’ve gotten serious about it. They really in the past week or so, going out every day doing what we call sprints. It’s not a sprint, but it’s a sprint. It’s a no-cane sprint. It’s going there. We have a courtyard next to our building with a fence. So I sprinted, the length of the fence.
Emily Hoffman 25:06
I see how long it takes me to get from 1 corner to the next corner. The first time I did it, it took one minute and four seconds. Today I did it. It took me one minute and six seconds I’m going in the wrong direction. But it was the practice run. I’ll figure it out tomorrow. I just have to practice it. Once I’m able to do it I can do it again. I told my friend the other day I said there’s no regressing and stroke recovery. You do it once you can repeat it. It’s only moving forward.
Bill 25:41
Yeah, absolutely. So what about the things that do get in your way from feeling motivated on a particular day? Do you ever have those days where you’re feeling unmotivated and you say stuff? I’m not doing anything today.
Emily Hoffman 25:53
Absolutely. Well, I never have a day where I don’t do something. either. I try to do something new every day. one new thing. De. There are days of course, when I just want to be lazy. I want to sit around and fuck around on my phone. I want to watch something online. But I don’t have that luxury. And I have the luxury of just doing nothing. Yeah.
Emily Hoffman 26:17
I have to I have to do something every day.
Bill 26:20
What’s the thinking behind that? You don’t have the luxury. So is it because you’re concerned about going backward? Is it because there’s so much to do? There’s so much still to achieve. Like, what? Why don’t you have the luxury to do nothing?
Emily Hoffman 26:36
There’s so much left to achieve. There’s so much more than I want to be able to do.
Bill 26:42
Yeah, and it’s early days. I mean, it is still early days in your recovery. You’re not Yeah,
Emily Hoffman 26:47
it’s only
Emily Hoffman 26:49
it’s only been a year and a half. Yeah. It’s nothing.
Bill 26:53
Yeah, the brain takes ages to heal properly. Even after the damage has been incurred. It’s still interrupted and into a feud with around the damaged site by other bits of inflammation and things that are sorting out and getting better. And then that takes a couple of years on its own to settle down and heal.
Emily Hoffman 27:14
Good. Okay, good. That’s good to know. I didn’t know that my doctors had not mentioned that.
Bill 27:20
Yeah. So what happened to me was I found myself being technically free from the issue in my brain, the blood vessel, that burst was no longer there, it was gone. But then I started to heal in this other way, which was an internal kind of brain healing. That was different from the trauma of the surgery and different from the trauma of the bleed in the brain.
Bill 27:44
It was different from all of those traumas. And there’s kind of like, an onion you know, there’s multiple layers of different versions of healing and they all happen at different paces and at different rates. So people that are listening who are early on, they might have a kind of like aha moment, a little bit down the track going, Oh my gosh, I can do something that I didn’t realize I hadn’t done for a long time or I remembered something or, my focus has changed.
Bill 28:15
And I had that just recently, probably in the last six weeks if I’m honest, my brain has switched on to a point where I can focus and concentrate for a lot longer. In front of a computer, especially now that we’re in isolation. I’m stuck at home and I’m doing a lot of online, building my online courses and my offerings to the stroke survivor community.
Bill 28:37
I haven’t been able to sit down and focus for eight hours a day. And being on a computer was the worst thing that you could have done to me. Whereas now, I’ve had this next kind of level of my brain switching on again. And it’s really profound because I haven’t experienced it for eight years and I mentioned it to my wife literally a couple of days ago and told her, I’ve been so productive in this downtime. I’ve never been so productive in the last eight years.
Emily Hoffman 29:11
That’s amazing.
Bill 29:14
Yeah. So what I’m trying to illustrate is that the perception for some stroke survivors, when they’re in the thick of it is that oh my god, this is hard. It’s always going to be hard. I’m never going to gain anything. I’m never going to achieve anything. But then there are those light bulb moments where things come on and you go, woah, that’s new or that’s different or That’s better.
Emily Hoffman 29:35
I think that’s part of it I want to do something new every day. Because I don’t want to feel like I get to a point where there’s so much more ground for me to cover in my recovery that I think there’s plenty of room for something new every day. Yesterday something new was doing heel lifts in the kitchen. Tomorrow, my new thing will be to walk farther than I have before without my cane. That either seems like something is so simple that you do the same walk you did without the cane before. Of course, I can do that again. I just added another block. I can do that. That’s easy.
Bill 30:26
And do you experience spasticity and left-side proprioception issues and numbness and all that kind of thing?
Emily Hoffman 30:34
My proprioception has gotten much better lately. I don’t have numbness I have tons of spasticity. My hand right now is a little fixed (inaudible). My hand is I’ve been doing a lot of mirror box. So I’ve been doing about a half an hour mirror box every day for the past week or so. And my left hand has seized up dramatically. So the mirror box is working. In that, my hand is getting another bigger message to work, but it’s overdoing it so I have to stretch it a little bit more. My leg seems to be okay, not less spasticity in my leg, for a while my toes were gripping, not so much anymore.
Bill 31:16
So they’re getting better.
Emily Hoffman 31:18
Yeah, that’s getting better. And I tend to roll my ankle on my left foot. Even before the stroke, I did that like a few months before the stroke. I’d had a small I rolled my ankle at work, got a very small fracture, and I never really fully rehabbed my ankle. I was just about a hundred percent with my ankle and then I had the stroke and so the whole leg went to shit.
Bill 31:45
Yeah, such a thing, but it has such a major impact because it’s so low and your ankle being just a fraction out, impacts your entire, you know, musculoskeletal system and puts you out of whack at the top. Which bikes with your muscles tense up and tighten up, and then not support you correctly.
Emily Hoffman 32:05
Absolutely. And that’s something that as in the classical lobbies world, we talk about all the time, you know, that the hip bones connected to the foot bone and blah, blah, blah, and so on and so on. Every bone is connected to something else and your body, say, if one thing is off, everything’s off.
Bill 32:24
So how do you rectify the ankle? Do you brace it? Do you do something with it?
Emily Hoffman 32:28
I have a hardcore AFO that I wear a custom AFO for my left foot. And it holds me in a nice stable position. There was a period where I was stepping on the side of my foot and rolling my ankle during recovery. And that was a proprioception thing because I just had no idea where my foot was. And that sense by appropriate obsession has gotten much better. That I know where my foot is landing when I’m walking now. I take that as a win.
Proprioception issues
Bill 32:57
Yeah, my surgery was in November 2014. So it’s been nearly six years. And my proprioception is much better than what it was when I first started. But when I get tired, I will run into the doorway with my left side or my right side because my proprioception kind of starts to fade, the quality of it starts to fade a little.
Bill 33:25
And then my ability to judge distance, compared to you know, where the doorway is, and where my shoulder is, also becomes irrelevant, almost like it just kind of goes away. It’s not there. And I often find myself just bumping into the doorway. And when I walk in the city with my wife, or we go for a walk for exercise, and she’s next to me, I’ll forever find myself just walking into her path.
Emily Hoffman 33:52
That’s something I did before my stroke
Bill 33:57
And she thinks that I’m trying to hog, you know, the footpath or the walkway. And she’s constantly telling me to just get out of my way, stop walking into me.
Emily Hoffman 34:08
When I was a kid, that’s funny. You say that when I was a kid, I would do the same thing. I’d be walking down the sidewalk with my mother. She says, stop walking in my way, get out of my way you’re walking. I would just kind of veer into her path. I had crappy proprioception even before I had a stroke.
Bill 34:25
So it’s interesting that you’re getting better. You’re finding that things are improving. Slowly, slowly, you’re noticing that your ankle is supporting you better just because your proprioception deficits are changing and they’re evolving. And you’ve got a brace that supports you. How does your knee work? Do you get a really good response from your knee or does it sometimes lose the ability to hold you up I used to stand up and then find myself doing the one-knee dance, you know, these ducking and weaving routines.
Intro 35:04
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 now how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, you’ve never had a stroke before, so you probably don’t know what questions to ask.
Intro 35:28
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you, it’s called Seven Questions to Ask Your Doctor about Your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website. Now recoverafterstroke.com and download the guide, it’s free.
Bill 36:06
How’s your knee doing?
Emily Hoffman 36:09
My knee is okay. The knee is the least of my worries and he is pretty good. It didn’t buckle underneath me anymore when I was in acute rehab in the very early days. It wouldn’t do it. It just it just came right underneath me. I would also get would as I was on the treadmill getting noticed they say just get the reps in doesn’t have to be pretty just do it. I was walking on the treadmill, my knee would start to hyperextend and snap backward it got really painful. It’s fine now it’s gotten used to working again.
Bill 36:43
Yeah, you sound like a headstrong determined person.
Emily Hoffman 36:48
Yes, you can ask anybody who knows me That is how they would describe me probably I’ve heard that many times before in my life.
Bill 36:55
Independent. So what was it like when you, realize that some of your independence was gone?
Emily Hoffman 37:05
That’s been the biggest struggle for me. And I was just talking about that today with Matt. Matt has, I don’t know how he does it. He’s been with me every single day. He is a true hard worker in this situation he’s been with me every single day. He takes care of the house. We have an apartment in New York. So it’s not much it’s not that big, but he does all of the household chores.
Emily Hoffman 37:29
And it kills me that I can’t help it drives me crazy. Drives me crazy that I can’t just go out for a walk on my own. I can’t just go to the gym when I want to. I can’t just go for a bike ride when I feel like it. So that’s been the thing that most frustrates me is that I’m not able to participate anymore. I can’t help out around the house. I can’t just go where I want to go when I want to. So I’ve had to learn to sound so corny and be nicer to myself. Sounds so hokey, but I’ve had to just kind of let it go. There’s nothing I’m you know, I’m doing everything I can to get past that stage. I can’t speed up recovery.
Bill 38:12
Yeah, it’s something that we spoke about with the OT sisters who are on a podcast episode that I am going to release just before this one. And one of the tips that they give stroke survivors to support themselves is to be kind and to have compassion for themselves. Allow yourself to stuff up and not achieve something and not do something and then forgive yourself or be okay with it and be your best advocate rather than being your biggest critic.
Emily Hoffman 38:49
Absolutely. Because there’s only so much I can do to get better and I’m doing everything I can to get better.
Bill 38:57
Are you at the stage where you can comfortably go into the shower and bathe yourself and do all of those types of things?
Emily Hoffman 39:04
Yep, that stuff I’ve been able to do for a while I have a Shower Bench at home. And the hardest part of getting dressed is the bra. I just lost my hand speaking of proprioception, my hand just slid right off the armrest. I, the hardest part of getting dressed is putting my bra on. Everything else I can do is that stupid bra clasp. So stupid. So I had to figure out a kind of problem-solving technique. So how do I put a bra on myself? I had to buy a whole bunch of pullover bras and figure out the ways to make it happen.
Bill 39:46
Yeah, I think there’s a multimillion-dollar invention in there for somebody because every time I speak to a woman, every time I spoke to a woman who’s had a stroke, the bra is, a very, very big issue and I reckon if somebody could solve that problem for them. That would be amazing. And I think it needs to be a woman who’s had a stroke. Not a man who hasn’t had a stroke.
Emily Hoffman 40:11
Yeah, there’s one little toy that I found on YouTube. I’m not going to say the name because it’s total crap. It’s such a waste. I was so excited about it. I was so hopeful. I got it and it just didn’t work. And I was like, Okay, well, there goes that that ship has sailed. I guess that’s not happening to me. And then I just started buying the pullover kind. If I want to be able to do something, I have to figure out a way that I can do it.
Bill 40:39
Yeah. So the pullover kind is like a sports bra?
Emily Hoffman 40:43
Yeah, like a sports bra.
Bill 40:45
That you would wear at the gym or going for a run or whatever?
Emily Hoffman 40:49
Exactly. Yeah.
Emily Hoffman 40:52
And I do it the same way. I learned to put the T-shirt on pull the sleeve up and over my shoulder, and spin it around. Duck my head through and spread my other arm in. The only way I’ve been able to do it, and I’ll take it, it works. It’s worked so far. And it’s the last piece of the getting dressed puzzle.
The stroke carer

Bill 41:12
Are you consciously aware? I know the answer is yes. But how did you become consciously aware of what Matt might be going through? And are there some things that Matt your carer is holding out on you and not telling you about?
Emily Hoffman 41:30
I don’t think so. We’re pretty honest with each other. I don’t think he’s holding in for any information from me. If he’s stressed, if he’s tired, he’s exhausted and he tells me he’s exhausted and it’s understandable if he’s is exhausted. He’s doing an impossible task all by himself.
Bill 41:55
Is he hard on himself as well?
Emily Hoffman 41:58
Yes, he is. Hard on himself. And I think it’s been a learning process for both of us that sometimes I have to say, you know what, I want to be able to do that myself. But I can’t like today in particular. He cooked dinner tonight. I’m not cooking dinner anytime soon. I sometimes do try to cook. I used to cook dinner every night.
Emily Hoffman 42:24
But I can’t do that every night now. So he cooks every night. And after dinner, he joked, he said, Are you going to wash the dishes? And I said, Yeah, I’ll go put the dishes in the dishwasher. He said, No, you’re not. I said, What do you mean I could put the dishes in the dishwasher? He’s like you’re not putting the dishes in the dishwasher.
Emily Hoffman 42:46
So I want to help he knows I want to help but there’s a limit to how much help I can be. And he also as much as he wants me to help is realistic and knows that there are some things I can’t do. So I know when he’s frustrated, I know when he’s tired. It’s a stressor. It’s a big stress on the relationship. But you figure it out. You figure it out, you have to have open and honest conversations. If something is bothering you, and you don’t talk about it, it’s just gonna turn into resentment. And that’s poison.
Bill 43:27
Do you hold out on him and from the perspective of I know I do with my wife? So what I hold out on is some days when I’m feeling shitty, again, which is all the time or whatever. I maybe don’t share it with her again and all the time so that she doesn’t have to hear about it all the time. In the beginning, she was getting it 24 hours a day, seven days a week. And then as it started to progress, I stopped sharing all of the juicy bullshit.
Emily Hoffman 43:57
He knows he knows when I’m not feeling off the shelf, he says, Are you alright? I go yeah. He goes are you sure? And then I start to think, wait, maybe I’m not okay. does he see something I’m not aware of? Why is he asking me maybe I’m not okay. And I just don’t realize it. But he knows he knows me better than anyone else. He can read me better than anybody else. It’s amazing. It’s kind of creepy, but it’s pretty amazing. He knows when I’m feeling a little crummy. And he knows how to get the information out of me when I’m feeling a little crummy. And he generally knows why I feel crummy too.
Recovery Awareness
Bill 44:36
Are you aware of how you’ve taken your recovery, you’re doing this physical part, you’re doing this cognitive part where you talk about your goals, your process, and then you do this other part, which is in pictures and images, and to the point where you’ve got The Emily’s strikes back on your T-shirt.
Emily Hoffman 45:05
I had to be on-brand.
Bill 45:09
When I saw that on Instagram, I automatically liked your page and said hello or something like that or commented on your post. Are you aware of like how imagery is fully important in supporting recovery as well as the words and the actions?
Emily Hoffman 45:29
Absolutely. The reason why he started the Instagram page was so I could look back at my progress so that when at the end of the day when he came from after work and was reading me to sleep at night, he said, What did you do today? How was your day? And I would say, Well, I did this thing when I couldn’t do this and I couldn’t do this and I couldn’t do this.
Emily Hoffman 45:47
The keyword is always yet I couldn’t do this thing yet. And then he’ll say we’ll look back at this video. That’s how the video started. Look at this video of this thing you couldn’t do a week ago. You’re doing it now. You couldn’t do it today. Look at what you couldn’t do a month ago. Now you can do this other thing.
Emily Hoffman 46:06
That was always the point of it was always to reflect to see my progress. And that’s really what that means that’s how it started. And now it’s become this other creature in and of itself at people from all over the world I mean you’re in Australia. We’ve got got Lena Elfsborg in Denmark. And how glow does it now in Texas?
Emily Hoffman 46:31
There are people from all over. Fe the girl who survived we’ve got Fe in the UK people from all over who have reached out we have one woman in Peru Qualia. Everybody’s wonderful people who reach out to us and say the things you’re doing I find inspiring. That’s amazing. And it was for me It started something for me and it’s turned into something else different.
Emily Hoffman 47:01
And it’s amazing. And my friend who just had a stroke as well, now I can at least use my experience to help her through this. So if I can turn this into a positive experience for somebody else into a help to somebody else. Absolutely. That’s, always something that’s been a thread running through my entire life. If I can help somebody else, then it hasn’t been worthless, then there’s been something valuable behind it.
Bill 47:32
How good is it to be in that position where you can be the confidant or the advisor or the emotional support to somebody who’s just been through a stroke, somebody that you know, so closely that if you hadn’t had a stroke, you would be? Well, for lack of a better word, almost helpless, you know, to do anything for but now, you’ve got this thing in common and it’s come from the shittest experience, but how good Is it to be the person who can automatically bridge that gap for your friend who, you know who without you would have experienced the same kind of gaps that you experienced.
Emily Hoffman 48:14
I’m thrilled, I’m thrilled that I’m able to. It’s one of the few things that makes me happy now. There’s not a lot that makes me very happy. That makes me happy that I can you know, I’m not unhappy. I’m not miserable. I’m not an unhappy person. But there’s not a lot that makes me go, Oh, yay, this is great, that I can help somebody else makes me think this is pretty good.
Emily Hoffman 48:40
What makes me happy is helping somebody else. And that new thing I do every day, one new thing a day, and if that one new thing is helping my friend kind of have a better understanding of what she’s going to go through. Then it’s good. That’s a good thing. There’s a point to all of it.
Bill 48:56
Yeah, there is a point isn’t there? We should give her a shout-out. What’s her name?
Emily Hoffman 49:00
Barbel. I sent her a link to the show. And tell her I’m going to be on this guy’s podcast. It’s about stroke recovery, you should listen to it. So I will tell her I’m gonna tell everybody when the episode goes up the Barbel. Big kiss to Barbel. We love you.
Bill 49:21
Awesome. So yeah, this is the thing like many stroke survivors do what you have done. And I found myself in a similar situation because I had learned some things that I thought would be helpful. I did start to share them that was about me at the beginning, because, you know, I wanted to feel good about myself.
Bill 49:39
And, it started as the podcast, it was called the transit lounge podcast, and that was in 2015. I had a lot of ideas. I needed to download those somewhere, get them out into the world so that they’re out of my head and they’ve captured some way in case I forgot them. I could go back and listen to them. And then I started to get feedback from people again saying the same thing.
Bill 50:06
Thank you. I needed to hear this episode. This was a great episode, I’m going to share that with somebody. And then it became this thing that was impossible for me not to do anymore. It was because I had often thought, Oh, I’m not gonna do this anymore. I’m over it. I don’t want to do this. And then it became, I can’t do this. Some so many people are going to go through stroke, that they’re going to need as much information as possible. Yeah, wow, I can’t stop. I feel obliged to do it in a good way.
Emily Hoffman 50:32
Well, I feel a little in a way I feel obligated to get better. There are so many people watching me. It’s one of the things that makes me continue to want to get better. I feel like I can’t fail. I can’t fail for myself. It might. I’m my priority. I can’t fail for myself. And I can’t tell all the other people who are watching from the sidelines.
Bill 50:59
Yeah. I hear you. It’s like putting it out there and creating an expectation and then people are kind of waiting to go, alright, let’s see if he gonna trip up, is he gonna get to the end? What’s gonna happen with this guy? And I’m like that too. I don’t want to let people down or disappoint them. Not that I care if they’re disappointed, but from that, no, I want to show you that it is possible. And I want to be an example of how it’s possible. I don’t want to just talk the talk. I need to walk the walk.
Emily Hoffman 51:28
Yeah. And it’s not a matter of I think disappointing other people. I’m not afraid I’m going to disappoint them. Because in the end, in the long run, they don’t matter. I matter. They matter in the sense that I know they’re back there. And I know they’re cheering for me and I know they’re rooting me on. But they aren’t going to live the rest of my life for me.
Emily Hoffman 51:55
I have to live the rest of my life and I have to make the best of the rest of the life that I have. And the best of the rest of my life means not walking with a cane for the rest of my life. It means being able to tie my shoes. There’s a whole laundry list of things that I want to be able to do. And it’s because it’s for me, not for other people.
Bill 52:20
Yeah. But that’s gonna help other people because they’re gonna go alright. Emily did it, then maybe I can do it too.
Emily Hoffman 52:27
Absolutely.
Bill 52:29
Yeah. And I think we need that. And I think hearing these conversations in the way that they, you, and I are having it right now. We’re talking about ourselves. And what we need to do is, you know, these are things that people need to do for themselves as well. So that people listening need to go, well. Oh, okay. So I need to do this for me, not for Mom and Dad or not for another person, whoever. And then the fact that they get better for themselves means that everyone else gets to benefit regardless. So that’s like the bonus
Emily Hoffman 52:59
Oh, Speak of the devil Look who just popped in the door. Where is he?
Bill 53:06
Is that all we’re gonna get? Hey, Matt.
Emily Hoffman 53:11
He can’t hear you. I’m still on the headphones.
Bill 53:14
Oh, okay.
Taking responsibility for your recovery

Emily Hoffman 53:14
He’s just checking on me. He’s always checking on me. No, I have a lot of responsibility to myself. I used to say a lot in the beginning, I said, I would say to Matt, I said, I have to get better for me, for you, and for us. He would say you’re not getting better for us. You’re getting better for yourself. And it’s true.
Bill 53:41
Yeah, that is so true. And it’s responsibility for yourself. Like it’s taking responsibility, isn’t it?
Emily Hoffman 53:50
Right. And I thought it was saying it would be flattering to him. He’s got so much unnecessary responsibility on himself. Yeah, that’s just me putting more responsibility on him. Yeah, that’s not very fair.
Bill 54:05
Yeah, it comes from the right place, but I understand that it could be a little bit of a burden on him. And, and having the awareness about how not only how we are impacting our well-being by having the types of thoughts that we have we also impacting the well-being of the people who care for us the most, and the people who are doing the most for us and supporting us the most
Unknown Speaker 54:31
And it’s a way of showing appreciation also, I think.
Bill 54:35
Yeah, and carers do get a bum rap. They don’t get the full extent of what they don’t get any support who do they get support from? Unless there is a carers support group somewhere, which most stroke carers can’t get to? Because they’re too busy caring for the unwell person.
Emily Hoffman 54:56
That’s what he says. He says, Well, how am I supposed to go see my shrink? To go see my shrink that leaves me home alone for an hour plus the hour it takes to get there and the hour it takes to get back. So that he goes to take care of himself. I’m the one who gets in if we don’t have a home health aide is what they’re called here in New York, a home health aide HHA.
Emily Hoffman 55:23
If we didn’t have an HHA, he would never be able to leave the house. We only have her Monday through Friday, during the daytime hours. And luckily, he’s been working from home all through Corona. So he’s been home the whole time since March. I am doing all of it on top of working and I don’t want this to turn into the Matt appreciation hour. But he does need to get recognized for all the work he puts in.
Bill 55:53
Yeah. It was Matt who sent me a postcard.
Emily Hoffman 55:58
Yeah, you had our postcard?
Bill 55:59
I did. And I thought, oh my god, like, that’s one of the last things I expected to happen to me. That’s somebody from the other side of the planet who would think you know what we need to do we need to send a postcard to this guy in Australia in Melbourne. And it was so lovely to receive it. Because it meant that what I was doing had purpose, it meant that what I was doing made a difference. It meant that what I was doing, helped people it created support for people and all the things that I imagined that it would do in that car that came in the mail was just like it’s cemented in my mind exactly what I thought I was doing this for. He’s such a cool dude who likes to come up with that idea.
Emily Hoffman 56:49
He is a cool guy. He’s incredibly thoughtful.
Bill 56:55
He sent it around the world to several people, right? I wasn’t the only one who received a card.
Emily Hoffman 57:01
We sent it to Lena Denmark. And we sent to you in Australia was sent to Lalia and Peru. What else did we send to? Oh, he can’t hear me now.
Bill 57:19
That’s fine.
Emily Hoffman 57:20
But yeah, we send a couple to different places we send to you. Lena, Lalia, I forget who else. There were a couple of others. But his idea was that we should, say hello to these people. When he was a kid. He had a pen pal. From like a music magazine. He had a pen pal. And they wrote back and forth about music and all sorts of nerdy things Dungeons and Dragons. And I guess he carried that over into his adult life. It’s a lot of fun to get mail from somebody to get real mail.
Bill 57:55
It is these days it’s far better than an email. Absolutely. It was such a treat to receive it. So tell me what’s on the horizon for you. What are you thinking about doing? And what are your next few short-term goals and long-term goals? I know one of them is to walk without a cane. What else is on the list?
Emily Hoffman 58:15
Yeah. I want to go for a jog I’ve never wanted to be running in my entire life more than I do right now. I want to be able to go out for a jog. I want to get a new dog. I want to be able to go out for a walk with my dog. I used to have an 80 lbs Pitbull.
Emily Hoffman 58:37
It’s a good thing. We didn’t have him anymore when the stroke happened. What would we have done with an 80 lbs dog? So I want to get another dog and take him out for a walk. So go for a jog. Get a dog and go for a walk. It’s all I wanted to be able to go to the gym on my own and do a workout on my own. To be able to travel again. Get back to work. Just get back to my life.
Bill 59:02
Yep. all the amazing things. Can I challenge you to do that to take the jog and then expand that a little bit and do a marathon?
Emily Hoffman 59:13
Ah, I appreciate the suggestion. But after two spinal surgeons and spinal fusion surgery, I’m not doing any marathon. My distance running got me into the first spinal fusion surgery, so I’m not doing any long-distance running.
Bill 59:32
All right, okay. I won’t hold you to that then. And I didn’t realize there was another underlying reason I mentioned that because, you know, in one of the episodes, really early on in the podcast I interviewed a friend of mine, Donna Campisi. It was Episode 28.
Emily Hoffman 59:49
Yes, I remember that episode.
Bill 59:51
Yeah. And after, man, she had a stroke when she was eight. So she’s in her 40s now, and so it would have been after three years, Donna ran a marathon because she went to a physical trainer, somebody like you probably, and said, I just want to run a little bit or something. I don’t know what. And that guy goes, Yeah, well, we’re not doing this, you know, five-kilometer run. He goes, we’re doing a marathon and she was like what are you talking about?
Emily Hoffman 1:00:20
Oh, that’s a very good trainer. I take that back.
Bill 1:00:22
I’m never running a marathon. And sure enough, they put in all the work and Donna’s a pretty amazing lady. And they went through all of the training and all the effort for her to finally run this marathon and she wears a big like a brace as well. And she adjusted, you know, her technique, the way that she was landing and walking and doing all sorts of things to finally get across the line after a marathon. And I just thought she was amazing because I’ve never gonna run a marathon. Whether I was able-bodied or not, it’s just not anything that ever crossed my mind to do. But the fact that she did it after a stroke.
Emily Hoffman 1:01:06
Unhealthy for you.
Bill 1:01:08
It’s not?
Emily Hoffman 1:01:10
No as a trainer. Running is not good for your body.
Bill 1:01:15
Is it too much impact?
Emily Hoffman 1:01:18
Yes, too much it’s not good for the joints. I explain it to people as Imagine you’re a Jenga tower, and you’re just slamming the Jenga tower over and over again on the table. Jenga tower crumbles. It falls apart.
Bill 1:01:35
Yeah, right. So it’s best avoided. So I think I did the right thing to motivate myself in the opposite direction and not to ever run a marathon.
Emily Hoffman 1:01:44
Yeah, it’s not good, especially if you’re running. I used to in high school. I used to run 12 miles a day for the fun of it. No reason just because I wanted to. I even wrote my college entrance essay about running, and I used to love it but I was diagnosed with this this is going off the track off track a little bit. At 15 years old I was diagnosed with a spinal defect called spondylosis thesis, which ties into actually my carotid dissection.
Emily Hoffman 1:02:16
I was told that I have a soft tissue disorder and it explains why spondylosis thesis is a moving your spinal column moves. So my spinal column shifted, it was all stacked up and then it moved forward. So my soft tissue just doesn’t work properly. I’ve always been very mobile in my joints. So the carotid dissection makes perfect sense and stays right in line with all the other soft tissue not working properly.
Bill 1:02:50
So now you’re all about trying to heal yourself and get better and recover and not put your body into undue stress and make matters worse.
Emily Hoffman 1:03:00
Exactly, get strong as the goal gets strong and capable.
Bill 1:03:04
Yeah. So it’s interesting because a lot of stroke survivors go the other way and Donna isn’t one of those people who has completely gone the other way and that she’s always going to run marathons. It’s just a challenge that somebody suggested and she took up the challenge. And then she achieved it. And she does amazing things in other parts of her life.
Bill 1:03:25
But I know there are a lot of stroke survivors who go from being very low effort and low risk-taking and then they go next level, and they start pumping weights in the gym even more, and they push themselves even harder. And to me, that doesn’t feel right personally because I feel like I don’t want to wear myself thin or, or wear myself out sooner rather than later. You know. I just want to get stronger as well. But then there’s this other extreme level of effort that people put in Because of the way that they’ve comprehended what life’s about and what happened to them. Who knows?
Emily Hoffman 1:04:08
Everybody does it in their own way you have to get better. And the only way you know to get better your physiatrist can set a goal. But you’re the only one who knows how to get yourself to that goal. They’re like I said, the experts who have a plan. And they set the landmarks and the goals for you to reach at a particular time. But as a trainer and a blobby teacher, I’m in a unique position to understand body mechanics and understand what muscles need to go into which movement patterns.
Emily Hoffman 1:04:48
So I know my foot turns in like this. I know what muscles I need to work on to straighten it out. And so if and if I want to go out for a jog My foot needs to be straight. So to go off for that jog, I need to get those other muscles strong so my foot doesn’t turn in. It’s simple things like that. And if you want to be able to if you have a goal you want to get to if you don’t know how to do it yourself, you talk to the experts.
Emily Hoffman 1:05:16
Talk to the physical therapist, talk to the resources, and the people you have available to you. Everybody who has a stroke has a physical therapist who has an occupational therapist somewhere in their recovery. Asked those people I want to be able to I want to be able to play the piano again. But my fingers just have not joined the party yet. They’re still hanging off they’re still wallflowers they’re not ready to do anything yet. They will be and the keyword again is yet.
Bill 1:05:48
Yeah, it’s a very powerful word. We spoke about it in the last episode, as well, is an amazing episode or interview on YouTube. I think It’s a presentation actually, on YouTube by Carol Dweck. And Carol Dweck is the person who put a book together called. I think it’s called something about The Growth Mindset.
Emily Hoffman 1:06:15
Carol Dweck, you said?
Bill 1:06:17
Yeah, Carol Dweck, I think. And she talks about the power of “yet” and she’s up on stage. I think it’s a TED talk. And she delivered that presentation. And it’s so fascinating. And it’s so great to hear that they are starting to teach that power of the word to children at school so that they understand that if they haven’t achieved something, it’s not a fail or a pass. It’s just they haven’t got to that point yet. And it’s a really powerful message for stroke survivors as well.
Emily Hoffman 1:06:59
It’s one of the first things I said to Barbell something you can’t do today. It’s just a matter of yet. You’ll figure out how to do it. You just haven’t done it yet. One of the first things I said to her.
Bill 1:07:17
Emily is an amazing way to end the podcast. Thank you so much for joining me. I appreciate it. My pleasure. I appreciate the role that you play in the community online and in the Instagram world.
Emily Hoffman 1:07:33
Yep. Glad I can be part of that community. I’d rather not be part of that community. But if I’m going to be part of that community, at least be a positive presence in it.
Bill 1:07:45
I know it’s a community that none of us wanted to join.
Emily Hoffman 1:07:48
It’s a community I could’ve done without being part of.
Bill 1:07:51
Yeah, didn’t want to join it. But now that we’re here, I’m glad that you’re involved to the extent that you are And, I’m happy I’ve got to know Matt and I appreciate receiving the card. Because everything that you guys do has made a difference to me and my recovery as well.
Emily Hoffman 1:08:11
Excellent. Thank you. I’m glad. I’m honored. I told you this I’m honored that you would ask me to be on the show. I’m just some weirdo in Brooklyn who had a stroke.
Bill 1:08:26
I’m a similar weirdo on the other side of the planet.
Emily Hoffman 1:08:29
Good. weirdos unite. That’s how Emily strikes back started. Cuz a friend of mine was like saying, You’re a badass. And I could have thought of a million better ways to show that I’m a badass. You’re a badass the stroke had its chance. Now Emily Strikes Back.
Intro 1:08:58
Discover how to heal your brain. After a stroke go to recoveryafterstroke.com
The post Carotid Artery Dissection Recovery – Emily Hoffman appeared first on Recovery After Stroke.
1 hr 12 min
August 25, 2020 8 Of The Best Stroke Recovery Tips – OT Sisters
Learn 8 of the best stroke recovery tips as shared by the OT Sisters, Jaimee Perea, and Suzy Burns who between them have more than 20 years of experience helping people recovering from a stroke and other neurological conditions.
Socials: www.instagram.com/o.t.sisters/
Episode 87. Occupational Therapy and Stroke Lecture – Bill Gasiamis
Highlights:
00.53 Introduction
03:13 Suzy’s background
03:50 Jamie’s background
08:42 Stroke recovery tips from OT Sisters
11:13 Be Intentional
14:44 See The Possibility In Things
16:46 Set Goals
23:39 Repeat Repeat Repeat
32:52 Build Your Team
36:47 Educate Yourself
42:01 Be Your Advocate
46:54 Be Well
Transcription:
Jaimee Perea 0:00
I heard a quote one time and I thought it resonated but I may not get this one hundred percent on but they had said, would you be friends with somebody who talks to you the same way that you talk to yourself? And I thought that was super powerful. You know, just be nice.
Jaimee Perea 0:18
Make friendships with yourself, you know, and it’s easy for anybody to focus on the negative and, just be kind to yourself. It’s okay if you work hard one day and the next day, all you want to do is take a nap all day. That’s okay.
Intro 0:40
This is the recovery after stroke podcast with Bill Gasiamis helping you navigate recovery after stroke.
Introduction

Bill 0:53
Bill from recoveryafterstroke.com This is Episode 111 and my guests today are Susie and Jamie The OT Sisters. Between them, they have more than 20 years of supporting people with neurological challenges relating to stroke. In our chat, we will discuss their list of 8 tips stroke survivors can use to help during recovery.
Bill 1:14
These 8 tips are not complex at all, and they sure don’t cost any extra, but they can make a profound difference to the way recovery occurs. Now if you’re feeling a little disconnected from your support team during restrictions and COVID-19, shutdowns, and you’re looking for more support, you may want to consider my recovery after the stroke coaching program.
Bill 1:36
People who have already signed up for recovery after stroke coaching get 12 months of unlimited access to a private one-on-one coaching thread with me by a private forum thread inside the coaching area. You have instant access to online training materials that can only be accessed by coaching clients.
Bill 1:56
You get access to courses, monthly training, and challenges made up by stroke survivors, me for stroke survivors. You also get expert interviews that are only available to coaching clients and mp3 you can download them for listening on the go, or training is transcribed to PDF.
Bill 2:14
For people that prefer to read and take notes or highlight important bits for reviewing at a later time. You also get two live hour-long coaching calls per month where you can ask me questions and get answers. You can access the site 24 hours a day, seven days a week, and complete training at your own pace and without needing to leave the comfort of your own home.
Bill 2:36
To find out more about recovery after stroke coaching with me, Bill Gasiamis go to recoveryafterstroke.com/coaching and now it’s on with the show. Okay, the OT Sisters, Susie and Jamie, welcome to the podcast.
The OT Sisters 2:53
Thank you. Hello. Thanks for having us.
Bill 2:56
Thank you so much for being here. I am excited because you guys are fairly early in this Ot Sisters game I feel. Tell me a little bit about each of you, whoever wants to go first and go first.
Suzy’s background

Suzy Burns 3:13
So I am Susie. I have been an occupational therapist since 2012. I started in home health care and rehabilitation and decided to go on and get a Ph.D. in occupational therapy as well. I specialize in stroke and brain injury rehabilitation now. And then I do a lot of research in stroke recovery, specifically looking at cognition and thinking skills and then ways to use mobile technology to improve everyday life.
Jamie’s background

Jaimee Perea 3:50
And I’m Jamie I have been OT for about five years, and I work at a neuro clinic. So I purely work with people who have had acquired brain injuries and I specialize in brain injury as well. But I like vision and so I specialize in vision after brain injuries specifically, specifically after brain injury and more recently I have an interest in a concussion for getting a lot of I think with the most recent trends and you know, everybody’s seeing new stuff with concussion lately and all the new research we’re starting to see more clients come in with concussion so that’s where I am.
Bill 4:33
Are you guys real sisters?
The OT Sisters 4:35
Yeah.
Bill 4:37
Thank god cuz you look so like. I would have been doing the whole you guys need to have a look into that if you’re not real sisters because something is going on there that you’re not aware of. I love that people become so passionate about helping other people and then specializing in these fields of stroke and neuro-rehabilitation and all that kind of thing, what drives somebody to become an OT or somebody that helps another person overcome a brain injury Suzy tells me?
Suzy Burns 5:13
I think a lot of people who go into occupational therapy have been touched personally. And maybe they know somebody who survived a stroke. My grandfather specifically had several strokes, they were, “mild strokes” that aren’t so mild. And, I think that influenced me to reach out and try to help people going through similar things as he did. So, I think a lot of people are drawn by themself, those experiences that they have.
Bill 5:47
Jamie, is that your experience too? Is that what motivated you?
Jaimee Perea 5:52
Same man. The same grandpa had gotten in a car accident quite a while ago. It was probably 15, or 20 years ago, and he had a severe injury to his hands. So they had to surgically reattach his fingers. And I thought I wanted to be a hand therapist. And so when I was in school, I did one of my internships in the hand therapy clinic. And then I did my second internship at the clinic where I currently work.
Jaimee Perea 6:17
And I quickly found interest in stroke and brain injury. I didn’t know I liked vision at the time, I thought it was going to be like hands-on like a hands-on kind of interest, but it just emerged and I fell in love with the population and seeing people who worked so incredibly hard and then tying that like, you know, like Suzy was saying to some of my family and their personal experiences, it drew me in quick and I fell in love with it and I stuck around.
Bill 6:47
Yeah, that’s interesting. That’s a great way to get involved. Because there’s an underlying emotional reason. And I think if you’re going to be an occupational therapist or any kind of therapist, there needs to be the underlying emotional issue and I’m not just talking about the one where you feel sorry for somebody that has experienced something, and now they’re unwell, I’m not talking about that.
Bill 7:09
I’m talking about that connection to having lived the experience of somebody that you know, or yourself. Now, I hate saying that because obviously, I don’t want any of my therapists to have ever gone through a stroke. But if there is one that makes a really good occupational therapist, do you know what I mean? Because they have that next level of understanding and I hate it for them to become a great occupational therapist in that way.
Bill 7:43
But it does help and I find that when I’m talking to people about stroke, on the podcast, they take me more seriously because they know that I have had a stroke and I can relate to them. And I’m not making stories up and I’m not misrepresenting it, and so on. So I love where you guys have come from is your granddad now taking credit for making these two amazing ladies who have studied this field and are doing great things?
Jaimee Perea 8:17
Unfortunately, he passed away, um, a few years ago, but we know, he’s proud of us. And we know he’s looking down and, really excited to see where we’re at. We talked about it and I wish that I knew before some of the stuff that I knew now. Like he had vision changes, he had changes to his shoulder to motor function, and I wish I could have helped more then I just didn’t have education. I didn’t know.
Stroke recovery tips from OT Sisters
Bill 8:42
Yeah. So today, we want to discuss a little bit about some of the tips that you guys can share that will help stroke survivors. I think stroke survivors need all the help they can get. Do you guys have some tips that you can share that we can talk about?
Jaimee Perea 9:01
Yeah, we came up with a list of 8 tips to support recovery and recovery means something different to everybody. And we were talking about that before this podcast. So recovery, to one person might be completely different. Someone else you had a good example of that.
Jaimee Perea 9:19
I work with a gentleman in the clinic, and he was a janitor, and he lost arm function completely. He regained a majority of it however, it wasn’t perfect by any means. It was functional. There’s an assessment that I do with some people called the motor activity log and you rate how well you use your hand on a scale of zero to five and how often you use your hand on a scale of zero to five.
Jaimee Perea 9:44
And so this man he raised himself a 5 out of 5, all the way down the list and, you know, just looking at it from an outsider perspective. You would think, you know, there’s some kind of you know, it’s not perfect, so I don’t think he’s going to rate himself 5 out of 5, but he saw that he was able to, you know, sort the bottles he was able to wipe down the board’s like you would at the school.
Jaimee Perea 10:03
So, and I think that’s a perfect picture of how recovery is so different for everybody and (inaudible) is good. And if he can get done what he needs to get done, you know, he’s an example of somebody who’s (inaudible) a little differently.
Bill 10:17
Yeah, I can relate to that because people would ask, me how I was coming along, and I would always say 95% The first time I said 95%, that was nowhere near 95%. But in my mind, I was 95% better. But then I realized, reflecting a year later, reflecting my original comment of 95% better, I realized then that I was nowhere near 95%.
Bill 10:41
But that thing that I used to tell myself in my mind made it enough for me to feel really good about the fact that I’m back at 95%. Like, that’s pretty good. I was struggling so much, but I associated my recovery with being further along than it was. And I think that’s a good thing if I can confuse myself or trick myself into thinking that I’m better than I am, why not? Share with me one, the number one, or the first tip that we can share with stroke survivors.
Stroke recovery tip 1. Be Intentional
Suzy Burns 11:13
So the first tip we came up with was, to be intentional. One thing I always tell people is that maybe everything’s not as automatic as it was before the stroke. And so that can be, I always give the example because of my background in thinking and cognition. And so, many times, we’ll go on autopilot and just go, and we’re not intentional about what we’re doing.
Suzy Burns 11:36
And one example I give is, you know, I’m going to the grocery store, I’m going to go to a different grocery store than I usually go to and then it’s on my way to work, but then I end up going into my regular grocery store that I go to every week, and then it’s 15 minutes out of the way this direction.
Suzy Burns 11:57
Someone gave me that example one time and it was just a perfect example of what autopilot might look like. So being intentional, like taking that extra time to be intentional about what you’re doing in your everyday life.
Jaimee Perea 12:09
And I think about it too is you know when you’re using your hand that may not work as well now as it did before you know your affected arm is used to be intentional when you use it, because it’s not automatic. You know, your left arm might be the one that’s now your dominant, and taking over it’s quicker and it’s easier and so it’s going to be automatic. And so like Suzy was saying, we just have to be intentional and plan out those times really when you’re going to use it and make it a more effortful but more intentional.
Bill 12:38
Yeah, that things both of those things that you said I can relate to. So when I finally was allowed to drive again after several months after my brain surgery, I went and picked up some groceries at a local shopping mall. And I parked in a spot where I normally don’t park the car and then I could not find the car.
Bill 13:00
And it took me about an extra half an hour to 45 minutes to walk around the entire parking area, so I could finally find my car. And I just couldn’t join the dots as to where I parked my car and my memory. I can’t say that my memory was that badly affected by everything that I had been through.
Bill 13:23
But it was such a drama to get back to the car and talking about, you know, which hand you’re going to use for what things I remember early on, one of my therapists said to me, when I wake up in the morning and brush my teeth and do all that stuff, I always use my left hand which was my affected hand always use my left hand to do all of those things with even though I don’t normally use them.
Bill 13:49
So I would try to eat with my left hand. And it was a massive challenge because I don’t normally eat with my left hand. And now I had to use it. I couldn’t get it some food was going everywhere. toothpaste would end up on my eye, I would poke myself in the eye so often rubbing my eye instead of getting it to my eyelid or just under here, I would get it into the eyeball. So it was a bit of a drama.
Suzy Burns 14:13
That’s a good point though like somehow embedding it into the routine too, and being intentional about what that routine might look like. So like you, for instance, use your left arm to help you get ready in the morning. So being intentional about like, well, this time of day, I eat breakfast and I’m going to use my left hand or whatever that might look like to each person is going to be different for everybody. But I love that example.
Bill 14:40
Yeah, tell me about tip number two.
Stroke recovery tip 2. See The Possibility In Things
Jaimee Perea 14:44
Seeing the possibility and things and knowing that you just because it’s something you know, taking out the word I can’t. I think and doing things that are still meaningful to you, and identifying what those you know, those roles are that you want to get back to. Those routines or those patterns, whatever it is that you want to get back to and knowing that you can do it, it’s it may be finding the right supports, it might be finding a different way to do it. It might be finding some equipment that helps you achieve it. But it’s possible.
Bill 15:15
Yeah, I came across this author Carol Dweck who writes about a recovery mindset or a growth mindset. And she talks about the power of yet. And that really sort of changed my thinking in that, okay, so I can’t do that yet. which sets us up or sets the brain up for maybe with down the track, we’ll still be able to do that then.
Bill 15:46
And we’ll get to there at some point. So the power of Yet and I found that with coaching people, as a coach as a, somebody who coached people before stroke and now also stroke survivors. I talk about, okay, you can’t do that yet. And what will it look like when you can do that in the future so that there’s an idea there’s a picture in their head about what that might look like, going forward, you know, so I love what you said.
Jaimee Perea 16:18
I like fat yet. I think that’s special because, you know, you see that being such a limiting factor, like a self-limiting factor to saying, well, I’m not going to remember anyway. We’ll try. You know, you’re not gonna remember unless you give it a shot and you find a way to remember, have some things in place to help you.
Bill 16:37
Yeah. And if you tell yourself, you’re not going to remember, you’re more than likely not going to remember but if you tell yourself you might remember you might.
Bill 16:46
All right, next, step number three.
Stroke recovery tip 3. Set Goals

Jaimee Perea 16:53
And the next one we wrote down was setting goals. So even if they’re small, many steps It gets challenging sometimes because sometimes after a stroke, it feels like, especially in the beginning phases, you’re taking these huge strides and making these huge, you’re just making so much progress but then some days It feels like you’re taking steps backward too and like I’ve said this so many times already on this podcast but every stroke is different to everybody’s injury is different.
Suzy Burns 17:26
But just making those small goals and tracking those goals even as you’re into the chronic phases of stroke recovery is just tracking where you’re at and keep making those goals to keep progressing because you can still progress you still progress so much beyond when therapy when you still have access to therapy.
Jaimee Perea 17:29
So in comparing it, you know taking where you are today and always looking back, like that reflective piece is so important because if you get stuck looking at today and you’re like looking at all the things you can’t do you know, yet, hopefully.
Jaimee Perea 18:03
But looking back at where you were yesterday, what do you do differently today or looking back three years ago, you know, what was hard them that’s a breeze now, and I think recognizing too that recovery isn’t linear.
Jaimee Perea 18:15
And so setting goals will keep you moving forward. But you know, a lot of people when they think after stroke, that their progress is just going to go in a straight line when really, like Suzy was saying, you know, it’s ups and downs and backs and forward, and it’s all over the place. And sometimes you wake up and you feel like you took a year back, you know, and, but then you’re okay. And so I think just recognizing that there are good days, bad days, good times, bad times. But overall, there’s a general trend better.
Bill 18:42
Yeah. I love that. You know, one of the issues that stroke survivors I think have in recovery, especially when they’re doing occupational therapy and they’re in the acute phase is that often we’re being helped and supported by occupational therapists, who are very young and early on in their learning. And this is a big drama because of course with age and more hours in the job and more learning and more studying, etc, they’re better overall, occupational therapists.
Bill 19:15
And it takes time for them to get this, I get it. And the people who have been around for 10 or 15 or 20 years in the administration office, they are sending, you know, the orders out to the floor, you’re working with that person, you’re working with that person, this person is doing that today, whatever they’re setting the timetable and managing the budgets and all that fun stuff.
Bill 19:36
And I think we miss out on the opportunity to, you know, to recover with those amazing brains with 20 or 30 years experience behind them and setting goals. I was lucky because I had amazing occupational therapists, all the people who helped me were amazing. But setting goals was a crucial part of my recovery.
Bill 20:04
And one of those little goals that I set was the ability to run across the road. And one of my therapists asked me, What do I want to do in my recovery? How do I want my recovery to proceed? Right? I just said to him, look, I’ve come to a fairway. But I do want to be able to run across the road in case there’s a car coming, and I don’t want to get hit by it.
Bill 20:28
Oh, then he goes all right. So not a marathon. None of that stuff. I said, I just want to run 150 meters. I’m not sure what that is in yards or feet. I just want to run 150 meters to get across the road. And that’s it. I’m done. So we walked we worked on that and he did exactly what you just said. He filmed me walking fast and then attempting to run because I had this perception in my mind that I wasn’t running correctly.
Bill 20:58
Therefore I was afraid to fall. injure me, so I didn’t do it, I needed somebody to show me otherwise. And then he showed me the video and he said, Look, you have a very good running technique. Your technique is not an issue, it’s just about the proprioception issue, which is your leg does not understand where it is.
Bill 21:20
And we just got to teach it a little bit about what the difference is between running, what that feels like, and what walking feels like. That’s exactly what we did. And then we compared a month, two months later, to the first one. And then I felt comfortable with even getting on a treadmill and starting to run again. And I never ran for more than just a few minutes on a treadmill. But that was enough to make me feel like I had accomplished this goal, which seemed little, but was massive.
Intro 21:52
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 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 22:17
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke.
Intro 22:41
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.
Jaimee Perea 22:55
Yeah, it’s interesting seeing those comparisons I think it raises the insight into it because You know, when it’s just left up to you, you think about like you’re saying, Oh, you know, it wasn’t very good or even now you might have said, like more recently after all of that therapy, oh, it’s still not very good. But then you see it from an outsider’s perspective. You know, it brings a whole new, perspective to it.
Bill 23:16
So we do need, other people’s eyes reporting back on what’s happening for us because we don’t know, I’m not sure the best judge of where we’re at. That’s just the way that it goes. And that’s not a bad thing. But that’s great that we have this support there. So tell me what’s the next step?
Stroke recovery tip 4. Repeat Repeat Repeat

Jaimee Perea 23:39
We put, repeat, repeat, repeat. Everybody’s favorite, you know, we think you know, our brains love repetition. And if you think back to all those beautiful principles of neuroplasticity, and how our brains change and grow and how those neurons relearn and fire, repetition.
Jaimee Perea 24:03
And the more repetition we can get, the better. So, we’re talking a lot about embedding stuff in the daily routine, like we were talking earlier with, you know, being intentional, but putting things in your daily routine so that you get more repetitions just like it sounds like you did not have you brush your teeth and eat just to get all those repetitions of lifting your hands to your mouth and grasping onto things and you know, what better time than our daily routine when we pinch about 50 things in the morning, that’s 50 repetitions of exercise right there and our brain is just firing.
Jaimee Perea 24:36
But you know, and it could be something small, it doesn’t necessarily have to be, you know, brushing your teeth every day, could just be focusing on bringing your arm up to the table every day. You know, getting those types of repetition or remembering a couple of things from your grocery list rather than writing them down every day. Or every week and just getting in those little repetitions as you’re able.
Bill 24:56
Yeah, but Susie, how do you make it fun? Because it’s so boring.
Suzy Burns 25:03
We’re talking about a research study that looked at like how many repetitions people get during therapy, and how many are required to improve their function for art use. And it’s such a dramatic difference between the number you do when there are versus what these animal studies are showing you need to have done to improve motor function.
Suzy Burns 25:26
But to make it fun, do things that you love to do. Do something that you enjoy. Maybe it’s painting, maybe it’s I don’t know, whatever is important to you. Just make sure it’s important to you. You don’t want to feel like you’re repeating something mundane and just trying to get these exercises because if it’s embedded in your routine, I mean, that’s the last thing you want to do. I’d cross that off of my routine if it wasn’t fun.
Bill 25:57
I love what you said because again, this is all triggering my time back in rehab, I spent a month and a bit there. So one of the things that my OTs asked me was, what would I like to do again, and it was around me, they potentially picked up that I was bored with the usual stuff. And one of the things I said I didn’t know if they had to pool, in the facility was do you guys have a swimming pool?
Bill 26:22
And they said we do. Can I use that to work in and they said, yes. So that’s it. That’s why I’d love to do that. And why I did that was because A, I love the water. I had never been back in the water. I hadn’t been back in the water. And it was summer. So I was kind of feeling like, man, it would be nice to be able to get back in the water.
Bill 26:43
And then it made it possible for me not to be afraid of falling. And that was a big deal because of course, everything else that I did. I risked falling and I had to have people next to me the whole time. Getting in the pool gave me that first glimpse of independence and I’ve got nobody around me and I can’t fall and it won’t matter.
Jaimee Perea 27:06
Sometimes, you know, it’s those things that you like doing and you get lost in doing and you don’t realize you’re like, oh, I’ve already gotten 50 reps in, and I was spacing out because I was just having so much fun doing the activity, you know, you probably are doing laps and walking around in there, and you’re in there for, you know, good 30 minutes, whereas if you’re on the treadmill, I’m pretty darn bored. You know, it’s finding those little things that people love doing and kind of injecting the therapy in there, you know, injecting the skills in there, to make it fun.
Bill 27:36
Yeah. And then I was looking forward. I was looking forward to going to therapy. And even though I was sitting in my you know, in the ward and my bed and just, you know, staring at the walls all day and watching terrible TV, and all that kind of thing.
Repetitions for Neuroplasticity
Bill 27:52
I would have preferred to not get out of that little cocoon to go and do a terrible exercise or something boring. I would just say no I’m all right over here you know, I’ve picked up a series of shows or whatever, and I don’t need to go anywhere. But I’m fascinated about the work that you looked at or you spoke about Suzy with regards to the repetitive, what’s required for neuroplasticity to start to take hold. So, how many repetitions are required? And what do you see like in the animal studies and give us a little bit of info there?
Jaimee Perea 28:30
I wish I had written this down. I had it in memory. I don’t have it offhand. I want to say that the number of repetitions that happen during a session is less than 100. I even want to say it may be less than 50. Whereas in a lot of these animal studies, they’re showing over 1000 repetitions per day. So, I can get back to you on that with the exact numbers.
Bill 28:57
Yeah, that’ll be great. I’ve seen video footage of neuroplasticity happening in the brain. So there’s some on YouTube, you can just type in neuroplasticity. And then, there’s micro. I don’t know what the terms are, but you know, really, really powerful microscopes that zoom into neurons and they’re firing and how they’re firing and all that kind of stuff.
Bill 29:20
And I think that’s amazing. And there is this understanding that neuroplasticity is something that happens and it’s easy, and it’s, you know, really good, but it’s the analogy that I like to use is, it’s like an amazing tennis player, you know, the world’s best tennis player. They’ve been playing tennis for the entirety of their lives.
Bill 29:42
You know, they probably picked up the racket when they were first three or whatever. And they’re still training at 35 to be the best tennis player because they realize that if they don’t use it, they lose it. And it’s a lifelong process. Isn’t recovery after an injury from a stroke or any other neurological injury, not something that you do for 10 minutes, and then everything’s good?
Jaimee Perea 30:08
It is a long-term process. I like the example you gave when we were just talking about something with tennis we were just talking about musicians earlier too, and how there’s a lot of research coming out that’s talking about these musicians who are just practicing and practicing and practicing because it’s what they do and playing their instruments and it changes the whole makeup of their brain.
Suzy Burns 30:31
You know, they have a cerebellum that is extremely complex. It’s kind of you know, there’s an interesting is about neuroplasticity, but there is a study out there that was looking at the difference in brains between a taxi driver and a bus driver. I don’t know if you’ve heard about this, but I know it’s interesting, right?
Suzy Burns 30:46
But they were talking about how the parietal lobe which is where like a lot of our spatial relationships, all the information is processed. Well, bus drivers, you know, they go back and forth. They go back and forth. They go back and forth. They don’t vary where they’re driving, and so their parietal lobe is a lot less complex than a taxi driver, especially probably one in New York. Driving all over the place. And you know, taking different turns taking shortcuts, you have to know the lay of the land, there’s a car accident here, let’s take this back road. So their spatial perceptions and all of that parietal lobe is just firing all the time. And so their makeup, the physical makeup of their brain is different and much more complex in different areas.
Bill 31:27
Wow, that’s fascinating stuff. We could talk about this for hours and hours. to five and I’m sensing multiple episodes coming in the future. Because I could talk about this for hours. And there’s not enough talk about this type of thing because I think stroke survivors gloss over the importance of these topics that we discuss.
Bill 31:48
And that’s understandable because they’ve got other things on their plate, right? But if the curiosity is there for stroke survivors that are listening or watching right now then these are really important things to understand. Even though it seems trivial, that a bus driver’s brain looks different from a taxi driver’s brain, it’s not trivial.
Bill 32:07
Like it’s a really important thing. And you could potentially adapt that knowledge to support your stroke recovery. Because if I had a stroke survivor, and I was an occupational therapist that I was teaching how to walk again, and now we’re a taxi driver, I would be using that to talk to them in a language that they understand about, alright, so you can’t lift your cup with that hand in this way. How can’t we go around the roadblock to find another way to lift that cup, you know, and just let them work it out? And I’m sure that they’ll come up with ways to work it out.
The OT Sisters 32:47
Exactly.
Bill 32:49
Tip number five.
Stroke recovery tip 5. Build Your Team

Jaimee Perea 32:52
Tip number five is to build your team. So we’re more familiar with healthcare in the United States, but Something that we found interesting is that in the United States and I know other countries as well, we emphasize independence. And you have to be able to do this independently, you have to be able to do this independently.
Suzy Burns 33:13
But there are a lot of other countries and regions out there where they rely a lot more on families and the families there to support you after you’ve had a stroke. And so, one thing that we would say, especially to the population that we work with here in the United States is it’s okay like use your family, use your friends, use your church community, use these people build that team to help you and support you and your recovery. It doesn’t all have to fall on you being independent in whatever it is like and maybe it is important to be independent in this task to you but, use your support.
Bill 33:49
I love that, build your team because my parents are amazing people and they helped me so much. But if I had to use them for everything, thing in my recovery, I would become a terrible son. Because I couldn’t deal with it I couldn’t deal with it and I talked about it lovingly and with a bit of fun. I talked about my dad, he was my driver for the most part, you know, when I was not allowed to drive, he was my driver. And I just talked about how he couldn’t do anything. So he dropped everything to be my driver. And that was such an amazing thing. But the fact that he was my driver drove me bananas because he’s such a shit driver.
Jaimee Perea 34:33
Like you in the passenger seat either go slow down. Stop there. Why aren’t you turning this way?
Bill 34:39
I couldn’t tell him he was a shit driver. I just thanked him every day for everything that he did for me. But you’re right. It’s about building a team of finding other people to bring in to also help with some of those challenges, right?
Jaimee Perea 34:53
It’s also a gentle balance, too. We were talking about this too, that you know, but not to rely too much. You know, there are things that you can do on your own. Do it Because like you’re saying, if you use it, if you don’t use it, you lose it. And so you want to keep getting better and keep inching toward where you want to be. rely on people, but don’t over-rely on people.
Bill 35:10
Yeah, I have a little course that I’m gonna make available to some people it was done as a webinar a little while ago, it was called The Road Back From Stroke. One of those steps is that build your team.
Bill 35:25
And I found that that has been something that people have related to actually understanding what the team looks like. It’s not just medical people. It could be non-medical people. The church is a really handy one. And that’s just for the emotional stuff, you know, all of that. Why am I alive kind of conversation?
Bill 35:43
So, I think for me building my team was helpful. I had in my team, obviously, my neurosurgeon, who I dealt with on a very professional basis. I had my occupational therapists that were in my team for probably eight or nine months, and then I was able to move away from that part of my team, I had my parents, I had my friends who would come out and take me to places that I wanted to go to that I hadn’t been to for a while, of course, I had my wife and my children, every part of those, every one of those people was my team.
Bill 36:15
And I didn’t burden one person with all the tasks, which is another important thing that carriers do so tough, and what you don’t want to do is give them the task of being everybody in that team because most carriers will say yep, okay, I’ll do that as well and out of guilt or whatever it is, and then they’ll end up neglecting themselves.
Jaimee Perea 36:38
It’s true. You know, there’s there’s a lot of studies and things on burnout too. And so caregivers need to take care of themselves.
Bill 36:45
Tip number six,
Stroke recovery tip 6. Educate Yourself
Jaimee Perea 36:47
Educate and advocate. We put educate because, you know, educate yourself. And that’s the foundation of so much. We know that the more that, do you even know what type of stroke you had? Is half the battle and knowing where it affected your brain? That gives you so much power in just your knowledge and being able to advocate, you know what medications you’re on, because that’s how you can advocate for being on different ones or lowering your doses or advocating for more therapy, or, you know, it is the foundation of a lot of the recovery is seeking out those resources.
Suzy Burns 37:28
Even myself, and I mean, I haven’t had a stroke, but when I go into a physician’s office, a lot of times I automatically even though I have a healthcare background, and I have a lot of knowledge around it, I still will fall back into that patient mode and listen to what the physician has to say. They’re like that kind of hierarchy. Like all-knowing I’m the patient, I do what you say. And so coming equipped to those visits with maybe taking notes or writing those questions out ahead of time, and just bringing a teammate with you.
Bill 38:05
Yeah, the teammate’s things are important. And doctors annoy me so much sometimes. And without him, I wouldn’t be here. So credit where credit’s due no problem. But what is it with doctors and you guys, I would hope you get cranky. Like I get cranky. What if it was doctors who say stuff like, they probably won’t walk again?
Suzy Burns 38:34
That’s hard because I think a lot of times, they’re asked really hard questions too. And, I had so many people who have come to me and I know you have too Jamie that has said, well, I’ve been told that I’m not going to walk again or I’m not going to be able to use my arm again. And then months and years later, they like I find it almost motivating to some people like I’m going to prove them wrong and I’m going to do it.
Suzy Burns 39:02
So, I mean, I hope that people can turn that around. But I know it can be so disheartening to hear that. But I hope it’s also motivating too.
Jaimee Perea 39:15
I don’t like the time stamp. That one is the hardest one for me to hear when people come to me and say, hey, it’s been three months since my stroke. That’s it, my windows closed, I might as well not try and I’m like, stop, stop right now. I had somebody come to me the other day and say that my student was in the room, and he got partial through his sentence I said no, it’s not real.
Jaimee Perea 39:37
And my student looked at me like, how did you know what he was gonna say? I was like, it’s because of the time-stamping it’s, it’s overused and it’s not true. You know, people have the potential for so long to keep getting better. It’s not a three-month six-month year window. You know, there are, like you said strides in the beginning it may slow down, but you still have great potential. And so that’s one of the hardest things that I hear is the time stamp.
Bill 39:59
Yeah. I am going back to what Suzy said earlier about educating and advocating. Like I’ve got a download people can come to the website, and they can get a free download. It’s called seven questions to ask your doctor after your stroke.
Bill 40:12
And it’s about that it’s about taking and I don’t know if those questions are even helpful, right? I assume they are. But it’s about just going there and having something that you can do as a stroke survivor, that you couldn’t do before because you don’t know what to ask or where to start and that might jog in their memories, something else they want to ask and create a conversation that wasn’t going to happen before.
Bill 40:35
People can go download that for free right and print it off and just take it in and just ask the doctors those questions. And the thing about the doctors going back to that is the timestamps and the generalized responses to hard questions is that they spend so much time, money, effort, and resources to plug our brains back up to get us back on our feet, to get us out of the hospital, and then to say, you probably won’t walk again?
Bill 41:12
No, no, no. That’s the last thing you want to say when you’ve spent so much time, money, effort, years studying. The last thing you want to do is give your patient as they’re wheeled out of that hospital you want to do is undo all your good work by saying you probably won’t walk again.
The OT Sisters 41:33
Yeah, crushing someone’s home. Yeah, they’re on their way to rehab.
Suzy Burns 41:40
It’s hard. It’s hard for me to hear stories like that.
Bill 41:43
Yeah. So it’s just like something that I’m gonna keep saying and keep saying in the hope that one day, one of those doctors has turned into one of our episodes and can just go oh, okay, I won’t do that anymore. What is step seven?
Stroke recovery tip 7. Be Your Advocate
Suzy Burns 42:01
Well, our step number seven is to be well, and so be well be healthy, not only thinking about preventing another stroke, especially like if you’ve had a stroke, you are at risk for a higher risk for a second stroke. And so different ways to prevent that.
Suzy Burns 42:21
So, nutrition, and physical activity, not only help with prevention, but they also can help with recovery too. So a lot is coming out lately on the benefits of physical activity and cognitive function. And even if you’re starting to think about cardiovascular health and brain health and what that might be, be well as far as nutrition, physical activity, and.
Jaimee Perea 42:47
Going back to sleep Is something that a lot of people overlook, and that’s something that we put down as one of the main priorities on our Instagram was a section about sleep because it’s something can and a lot of times heavily medicated and there can be little things that you can do to help with sleep and your sleep quality.
Jaimee Perea 43:07
And then of course mood and knowing that, you know, you might have changes to your mood like depression, you might feel down you might feel blue, you might feel anxious, stressed, and finding some good solid ways healthy ways to cope with that. And you know, speaking with your physician or, or counselor, or something is needed for that as well.
Bill 43:26
That’s brilliant. I love it to be well. And by being a well, that means looking at your nutrition, looking at your sleep. Those two I think are probably the two biggest things that made a difference in my life. And in my recovery, when I was able to get to sleep for longer amounts of time, I was able to feel way better when I woke up the next day which would, as a result, support me in overcoming fatigue, further along in the day, like you know, after a few hours or four hours or whatever it was later on in the day.
Bill 44:07
And then eating well also supported me to help to overcoming fatigue. Now, the diet that helped me the most, which is something that I’ve benefited from greatly, is combined with, you know, getting more sleep was a low carb diet, a diet that didn’t include highly processed bread, and sugars and processed cereals and all that type of thing.
Bill 44:29
So that made a massive difference to the way that I was able to feel after that meal. I wasn’t getting those food coma experiences, which as a result helped me get further along in the day as well with decreasing the amount of fatigue.
Suzy Burns 44:45
Yeah, I would agree with that. And I’ve heard good things. While I’m not a nutritionist, my background is actually in nutrition and dietetics that’s what my bachelor’s degree is in. So I’m very passionate about nutrition and healthy eating and how it can help with recovery too. But yeah, a couple of diets. Of course, the low carb has been really helpful for a lot of people. I always hear about the DASH diet too.
Bill 45:12
Tell me about that one.
Suzy Burns 45:13
Yeah, that one is a big recommendation, at least here in the US. It’s more about lots of fruits and vegetables. Similarly, lots of whole grains, lean meats, and dairy, they used a lot to prevent or reduce hypertension. That one’s kind of foundation of that one. And then another one that we see a lot of is that anti-inflammatory type diets, like a Mediterranean type diet is another one that they tend to recommend.
Bill 45:44
Yeah, awesome. Combined, you guys have got in my mind, the ideal combination of things that stroke survivors need to get on a really good path to recovery. When I first started going through my stroke journey in 2012 there was no information out there about what anyone could do to heal, recover to overcome. And to get that information if there was some you had to spend a lot of time researching.
Bill 46:16
I spent tons and tons of hours researching and trying to find people to help me because my doctors couldn’t answer simple questions like this because it’s not their thing, right? That’s not what they do. And I used to get frustrated. So combined. I feel like you guys have got a very good foundation and sort of broad depth of knowledge, that all those things bringing them together make a massive difference to stroke survivors. So well done for that. Also, then, what’s the next step are we up to number seven?
Stroke recovery tip 8. Be Well
Jaimee Perea 46:54
Eight. We must be kind and patient with ourselves. We saved that one the best for last because we agreed it was most important because it’s a journey and it’s not a couple of steps that will get you better it’s a journey and being kind to yourself along the way is important and we know that it’s not a smart thing to there are so many things out there where you can compare yourself to other people or see somebody getting better at a different rate than you are but you know, be patient with yourself and set those mini goals and you know, just continually strive to better yourself and but also be patient with yourself along the way.
Bill 47:33
Yeah, being kind and compassionate to yourself is such an important one I was hard on myself before the stroke into that, you know, I had all these goals, always compared myself to other people doing better in business or making more money or doing this or doing that and it just made such a difficult life it made for such a stressful life that was caused by me.
Bill 47:56
I thought it was external people or things causing it but it wasn’t, it was me. And when I was able to stop being kind to myself and realize that, that process, the way that I used to go about life wasn’t going to support me going forward because I had to deal with all these other complications. You know, memory issues, fatigue, all that kind of thing.
Bill 48:15
I started to get comfortable with the fact that if I’m nicer to myself, and I wasn’t my harshest critic, then I’ll be able to flourish in that space and allow myself the ability to screw up and the ability to be wrong and the ability to take the wrong step. And giving yourself a break, I think makes a massive difference. In the way you feel physically, the way you feel emotionally, and the way you feel mentally.
Jaimee Perea 48:46
I heard a quote one time and I thought it resonated, but I may not get this hundred percent they had said, Would you be friends, with somebody who talks to you the same way that you talk to yourself? I thought that was super powerful. You know, just be nice. Make friendships with yourself, you know?
Bill 49:09
Yeah.
Suzy Burns 49:11
Yeah, focus on problems and it’s easy for anybody to focus on the negative and, just be kind to yourself. It’s okay. If you work hard one day and the next day, all you want to do is take a nap all day. That’s okay.
Bill 49:33
And it is, it is. And it’s not only is that okay because it’s okay. It’s also okay because it’s probably really necessary in your healing. It’s how we heal, right? And that means if you’re wasted, and for one day, you’ve got to do nothing. That’s well done you are doing a lot to help yourself recover. I remember about two or three weeks into my rehabilitation after brain surgery.
Bill 50:01
So November 2014, was brain surgery rehab until about December 20 something and I’m not sure if it was week one or week five or week four out I can’t remember, but there was a guy in there and he was in his job. And I talked about this in a 10-minute presentation that I did here in Melbourne a few years ago.
Bill 50:22
And I talk about the way we speak about ourselves and the language and this guy I named him Ivan because I can’t remember his name. He had the job of moving an empty toilet roll picking it up with his affected hand grasping it and then moving it over to the right side of his body. But his affected hand wouldn’t do that in an ideal way.
Bill 50:47
And what he was doing was he was calling his hand a bastard. And as he was doing that and getting more and more frustrated, he was failing to pick up that empty toilet roll more and more and he was failing to put it down where he needed it to go. And because I had been a coach and I had done coaching for many years before that I couldn’t resist, right?
Bill 51:09
So I just chimed in and I said to him if your hand did what you wanted it to do, what would it be Ivan? He said it’d be my friend. And I got him to talk to his hand in that way and call it his friend. And he goes, okay, friend, let’s do this, something like that. And he picked it up within a moment after calling his hand a friend, he picked it up for the first time, held it on the other side, and let it go. It was the most profound change that I’ve seen in a human being ever.
Bill 51:45
And in this most difficult time, he had a massive win just by changing one word to another word, you know, so I’ll share that with you, and in the show, notes will be the link back to that episode because it’s an episode of the podcast so you can see it. And I hope that people who listen to our interview, understand that what you’re suggesting, is not really that complicated.
Bill 52:13
These things are not things you have to pay extra for, or you have to do anything more for. You said they have to be intentional. They have to see the possibility in things. They’ve got to set little goals. And they’ve got to, repeat, repeat, repeat, or that could be a hard one. But we understand it’s important.
Bill 52:35
They’ve got to build the team around them. And that’s just a couple of phone calls, calling in favors to people that you’ve done favors for before. And they’ve got to educate themselves and be their advocate. I love that one. That’s awesome. And they’ve got to be well by looking after their diet. Then look after their sleep.
Bill 53:00
And just doing some things about being kind to themselves. So tell me about what’s in the future. For the OT sisters, I know that recently you guys have come together on Instagram, as this team of amazing OT knowledge. What do you guys have in store for your practice going forward?
Suzy Burns 53:28
So I think just both of us working so closely with people who’ve had stroke and brain injury, we know that there’s a lack of information and a lack of resources for people. We’ve had people come up to us and just say, hey, you’re an OT, like, can you answer this question for me? And so, what we hope to do is to help survivors of stroke and brain injury become more confident feel empowered, and take an active role in their recovery.
Suzy Burns 54:01
We just started on this venture with our Instagram account about a month in is so very new to OT Sisters but, our goal is to create something and we’re working on defining that right now. But create something helpful to people. And they can use this as a resource.
Jaimee Perea 54:24
They can access it because that’s pretty limiting too. For people who don’t have access to therapy or don’t have access to ongoing services.
Bill 54:32
Well, I’m gonna take credit for discovering you then. That is awesome that you guys are so early on in this combined joint venture type thing. That’s what we need. We need combined knowledge coming together to see patterns and then bring information out to people uniquely and differently because there’s nothing more boring than sitting here on my own doing that all the time every day.
Bill 54:58
No one wants to listen to me talk about myself and how amazing I am, even though I am. And I see you guys are high energy and that’s required and important because stroke recovery although it shouldn’t be overwhelming for somebody who’s going through it, should be something that’s energetically charged in a bit of a positive way you know, that’s full of life, etc.
Bill 55:24
Rather than dull and dreary your post on Instagram to prepare for this podcast was what excited me about meeting you. Because you guys are doing all the crazy stuff in the background. So I thought I’d met your energy with my technicolor poncho.
The OT Sisters 55:42
I love it.
Bill 55:47
I looked everywhere to find this poncho. When I finally found it. I had to have it. So thank you for doing what you’re doing. Thank you for going on this joint venture and bringing more information to stroke survivors, we need it, especially in this time of isolation where we can’t go out and be with our OTs as often as we would like, especially when we can’t be with our family as often as we’d like and all those other things. We need more people advocating for us and doing this kind of work. So from me to you and from all the stroke survivors thank you.
Suzy Burns 56:23
Thank you for inviting us to speak with you on this podcast today this has been great.
Bill 56:29
My pleasure. Now before we go, if people want to find out more about you guys get in touch with you guys. Or where would they go on Instagram?
Jaimee Perea 56:37
@O.T.Sisters
Bill 56:43
Okay. And is there a website?
Suzy Burns 56:46
Not yet but it is something that we’re working on developing.
Bill 56:51
Alright, perfect. When it’s up, let me know. So I can send them a link if they ask but thank you so much for being on the podcast.
The OT Sisters 56:58
Thank you.
Intro 57:05
To discover how to heal your brain after a stroke, go to recoveryafterstroke.com
Bill 57:15
Medical disclaimer, podcasts courses, webinars, and website. Importantly, we present many podcasts, courses, and webinars designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast course or webinar, are the individual’s own experience and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.
Bill 57:47
All content on this website and any linked blog, podcast, or video material controlled by this website is created and produced for informational purposes only and is largely based on the personal experiences of Bill Gasiamis.
Bill 58:02
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.
Bill 58:21
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.
Bill 58:42
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 you might be called triple zero if you’re in Australia, or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Bill 59:04
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. If you choose to rely on any information within your content, you do so solely at your own risk. We are careful with the links we provide. However, third-party links from our website follow your own risk and we are not responsible for any information you find there.
The post 8 Of The Best Stroke Recovery Tips – OT Sisters appeared first on Recovery After Stroke.
1 hr 1 min
August 17, 2020 All The Signs Of Stroke – Jason DePetris
The last thing Jason DePetris expected when eating breakfast one morning before running a marathon was that the numbness he was experiencing on his left side was one of the signs of stroke.
Socials: www.instagram.com/thebeherenowcollective/
Podcast Episode 108 with Dr. Michael Merzenich: https://recoveryafterstroke.com/rewiring-the-brain-michael-merzenich/
Books
Grain Brain
Eat Fat Get Thin
Highlights:
00:55 Introduction
02:06 The signs of stroke
07:47 Saved by a stroke
12:56 Worried about the deficits
18:10 Dealing with uncertainty
26:19 Taking responsibility for stroke recovery
32:55 Touch base
37:53 Dealing with emotions
43:27 Post-stroke diet
56:34 Be Here Now
Transcription:
Jason 0:00
That there was a period of time where I was afraid to do anything on my own, especially after the craniotomy. So I had a lot of family members sort of rotating babysitting duty. Because I was afraid to you know, I legitimately wasn’t capable of doing certain things, but I also was afraid to be alone too.
Jason 0:19
And what quickly developed was a sense of frustration at I was frustrated at being treated like I was helpless, but I also felt like I was helpless. And so what quickly developed was I would get mad at myself for feeling like I was helpless and feeling like I needed the help. And then when family members would try and step in and help, I would be like, I don’t need that. Leave me alone.
Intro 0:44
This is the recovery after stroke podcast, with Bill Gasiamis. Helping you navigate recovery after stroke.
Introduction

Bill 0:55
Bill from recoveryafterstroke.com This is Episode 110. My guest today is Jason DePetris. Jason was preparing for a marathon. And one day before the event he started to feel the classic symptoms of stroke, including speech issues of facial droop, and numbness on his left side.
Bill 1:15
Now when you get to the end of this episode, whether you’re watching on YouTube or listening on your favorite podcast app, please do me a favor and share this episode in other groups you hang out in. This will help someone that is doing a tough at the moment perhaps feel a little better about the journey they are on.
Bill 1:30
Also, if you feel this podcast makes a massive difference to the stroke community, please do me a favor and give the show a five star review on iTunes or wherever you download your podcasts from. Now it’s on with the show.
Bill 1:43
Jason DePetris. Welcome to the podcast.
Jason 1:46
Thank you. Thanks for having me.
Bill 1:47
It’s always lovely to hear from a person who wants to be on the podcast and reaches out to me it really makes a massive difference actually because I don’t have to do all the work to fiind people, so thank you as well. Mate tell me a little bit about what happened to you.
The signs of stroke

Jason 2:06
So I’m relatively new to the recovery journey. In October of last year, so October of 2019, I was traveling in Chicago. I’m from Los Angeles. I was traveling in Chicago and I was actually there to compete in the Chicago Marathon. And the day before the marathon we were sitting in a restaurant having breakfast. And it started with my hand went numb, and I dropped my fork on the ground.
Jason 2:35
And I didn’t immediately think that there was anything super unusual about that because I’ve had issues with a pinched nerve in my neck for years, had seen a chiropractor for years, and I had gotten numb hands before so it was kind of annoying, but I wasn’t alarmed. So then the numbness started to spread up my arm.
Jason 2:55
And shortly after that my speech started to get slurred my face started to droop and when I really started to get scared as I was traveling with my spouse and my mother. My mom looked at me and she said, she goes, your faces drooping, go look in the mirror. And when I got up to go to the bathroom, my leg wasn’t working properly.
Jason 3:15
I was sort of half limping half dragging my leg, that’s when I got scared. And then by the time the paramedics arrived, I was fully paralyzed on the left side and I was actually kind of sliding out of the chair, my head was walling back, I was kind of sliding out of the chair. And I never really completely lost consciousness, but I was definitely not all there.
Jason 3:39
So by kind of dumb luck, the restaurant we happen to be eating at was just a couple blocks from the hospital. Just by chance, so I arrived at the hospital very quickly. I was very fortunate that they were able to administer the TPA right away the part that my family sort of still teases me about it still kind of, it wasn’t funny at the time, but it’s kind of funny now.
Jason 4:05
With the lack of oxygen to my brain and you know, I was, not all there. I was so focused on the marathon and all the training I had done that in the ER when they’re telling me you’re having a stroke. I was actually arguing with my family saying, I gotta get out of here I have to run the race tomorrow. And they were like, Jason, you’re having a stroke, you’re not going anywhere. So yeah, so I just chalked that up to lack of oxygen but and then during the CAT scan, they also discovered a large fusiform aneurysm in my belief it’s called my MCA. My right MCA?
Bill 4:41
So not only did you miss out on breakfast now they we’re going to stop you from going to a marathon?
Jason 4:47
Exactly. I was not happy about that.
Bill 4:51
What were you having for breakfast?
Jason 4:53
I was having pancakes.
Bill 4:58
So you can have some energy for the marathon, I love it.
Bill 5:01
Some interesting thing, the thing that you said about trying to convince people to let you go to the marathon that is so common people having a stroke, oblivious to the seriousness of what is happening to them, and they think it’s just business as usual.
Bill 5:17
And you’re not the only person I did the same thing. I had a bleed in my brain three times. I had it once in February of 2012, once in six weeks later, and then once in November of 2014. And the first time that it happened, I went to work for seven days with the same sensations that you had that you experienced.
Bill 5:41
And walked with a numb foot got on ladders with a numb foot made no difference to me whatsoever. My wife even told me I was walking strange. I ignored her. I went to the chiropractor instead of the doctor, the chiropractor told me to go to the doctor to the hospital. I ignored him I argued with him as well, like it’s so unbelievable how we minimize things that are happening to us just so that we can do work or I don’t know what achieve running in a marathon.
Jason 6:14
This happens to other people not to us, right? I mean, that’s the way we think. This doesn’t happen to me.
Bill 6:21
Yeah, indeed exactly right. I was 37, how old were you?
Jason 6:26
I was 41 when it happened.
Bill 6:28
Other than that incident at the cafe while you were eating, was there any signs before that, that maybe something is going on? In hindsight.
Jason 6:40
In hindsight, possibly, so we think the doctors presumed that it was actually the brain aneurysm that caused the clot to dislodge or lodge or whatever you want to call it and cause the stroke. We think that I probably had the aneurysm for many, many years. Also because it’s a very large brain aneurysm. I had never had any medical incidents before that looking back there were some kind of odd symptoms in the months leading up to it that I didn’t pay attention to at the time that were not severe enough for me to go to the doctor, but I think maybe something was happening.
Bill 7:20
So, you know, the aneurysm that was found later, but your stroke seemed to be because of a clot. Do they know the underlying cause of that?
Jason 7:32
They believe although there’s really no way to know for sure after the fact but they believe that a clot formed in sort of in the base of the aneurysm and something caused it to dislodge and get sort of stuck in the artery.
Bill 7:47
Wow so this clot that almost killed you has also quite possibly saved your life because now they found the aneurysm that maybe caused it right? So what did they do to the aneurysm to treat it?
Jason 8:03
So yeah, you’re absolutely right. That’s pretty much what the surgeons told me is that that’s probably in a strange way, a good thing that this happened because the aneurysm had the aneurysm ruptured, I very likely would not have survived that. When I returned home from Chicago, I saw a team of neurosurgeons here in Southern California, and they ended up doing a craniotomy and an attempted cerebral bypass.
Jason 8:32
So they harvested an artery from my arm and they attempted a bypass around the aneurysm and they were going to clip the aneurysm, but that was unsuccessful. So basically what happened was, during the surgery, the blood vessels began to spasm. And so they were unable to get blood to flow into the bypass and I also had a seizure on the operating table as well.
Jason 8:57
So they were unable to complete the bypassing. Clip, they completed the bypass but nothing was falling into it. And they after many, many tries and about double the amount of time that I was planned for the operation, they finally just closed up all my incisions because it was safer not to proceed any further.
Jason 9:16
So, about for almost exactly four weeks after the craniotomy I underwent a stent and coiling at another hospital for the aneurysm and that ultimately did work. Although that was successful and the stent uncoiling did work. Although, ironically, on July 21, just a couple weeks ago, I did experience a TIA and I was hospitalized again, and they discovered during that hospitalization that the stent is almost entirely blocked with blood clot. So we’re now at the stage where we’re trying to figure out what the next steps are and why that happened.
Bill 9:56
Okay, so treating that blood clot with blood-thinning medication, I imagine at the moment?
Jason 10:05
Yes.
Bill 10:07
So how does it make you feel going through all of that, and then getting to this point and then having a small episode a little while ago, what did that experience make you feel?
Jason 10:20
It’s been quite a ride for a long time, after the original stroke, the sort of elephant in the room for me for a long time was the aneurysm not the stroke. I was much more afraid of the aneurysm than I was having another stroke. And frankly, again, with the whole this happens, other people not to me kind of mentality, frankly, hadn’t even occurred to me that oh, this could happen again.
Jason 10:47
I thought, well, it’s been dealt with, it’s been solved. I was much more afraid of the aneurysm. This was a reality check. A lot of the fear and the anxiety that I thought I had dealt with and that I thought I was sort of past has now come screaming back into the picture. So that’s been fun.
Bill 11:07
That’s interesting, isn’t it? I went in, I was told somebody is so dramatic. There’s a blood vessel in your head that is leaking. There’s blood coming out into your brain. And for me, the initial experience wasn’t dramatic enough to concern me about what the future might hold. It was, Oh, well, it’s just something that happens, you know, they’ll fix it up whatever they said, is unlikely to bleed a second time.
Bill 11:42
So I ran with that part of it. And six weeks later, when it happened again, it became so dramatic. I couldn’t recognize my wife and then when I came out of hospital that time, I had to go through a whole process of learning how to type an email again, memorizing, driving, all those things that just went out the window immediately. That’s how dramatic it had to get for me to start taking notice that this thing was serious, and that I might not be around in a few months time. Those things cross your mind. Did you have the mortal conversation with yourself?
Jason 12:24
Yeah, yeah, this, TIA really scared me because the for a few reasons. The first time this happened in Chicago, I didn’t know what was happening as it was happening. The second time when I had the TIA it looked, felt, sounded, identical to the original stroke. So I knew exactly what was happening. And it was terrifying. Because my first thought was, I really kind of dodged a bullet the first time. I came away with relatively minor deficits compared to a lot of stroke patients.
Worried about the deficits

Jason 12:56
And my thought was, what deficits am I going to have this time? That’s what I was thinking as I was waiting for the ambulance to arrive. And it did actually create some deficits. Luckily, again, I was very, very lucky. But the deficits are more severe than they were before. I’m starting physical therapy, I didn’t have much in the way of physical deficits the first time. Now I’m much weaker on that side, my knee buckles underneath me. It’s you know, so it is definitely more noticeable. It is more scary to me This time for sure.
Bill 13:32
Is that left side or right side?
Jason 13:35
Left side.
Bill 13:36
Yeah. So the knee-buckling, that’s something that I had, and it continues, from time to time when I’m tired. It sort of gives way and you’re so early on in the process, and uncertainty is normal, feelings that you have are quite normal. So what will happen is, as things start to progress, and you start to resolve some of the challenges the underlying challenges that are there, you’ll start to feel better and better about it.
Bill 14:03
And then they’ll become things that you just live with that don’t really get in the way of the majority of the things that you do. But running might be something that you don’t get back to for us for some time right? Your need to run in marathons. What was behind that? What was the reason you decided to start running marathons?
Jason 14:27
That was sort of it was kind of my form of meditation. I’ve always been a very, very active person, I’ve always been a workaholic. I have always had trouble sitting still. And the marathon running was my form of meditation. That’s how I would turn my brain off. And that’s how I would process information and things like that.
Bill 14:55
So the big question is, how do you turn your brain off now?
Jason 15:03
That’s something I’m still working with and learning about. I do a lot of mindfulness meditation. I do a lot of journaling. I enjoy writing. I’m writing a book right now. That’s kind of my form of doing that now. It’s definitely been a learning process. And I’m trying so hard. I mean don’t get me wrong. I wish that none of this had ever happened. But if it was going to happen, I’m sort of glad it happened on the timeline It did.
Jason 15:37
I’m glad that the TIA was nine months after the stroke because I had some time to process and kind of learn how to deal with this stuff. I definitely have the fear and the anxiety and all of those things that I’m sure you know, I have, but I’ve had some time to learn how to manage those. So it is scary, but I’m much more prepared I think this time to accept it as you know what setbacks happen, they’re inevitable. That’s part of recovery. That’s what recovery looks like. And that’s not a reason to just quit.
Bill 16:10
So do you think that your previous process of preparing for marathons is serving you right now?
Jason 16:22
100,000,000% Yes absolutely. It’s a very parallel or analogous kind of process, I think.
Bill 16:33
Yeah. And what kind of work were you doing? Before you had the stroke? What kind of work involved in?
Jason 16:41
I’m in the financial services industry?
Bill 16:45
Is there a lot of problem-solving in that space?
Jason 16:48
Yeah, definitely.
Bill 16:50
Yeah. And it seems to me that you brought problem-solving, you’ve brought, marathon running and all the things that are associated with getting to the finish line, you’ve brought that to your stroke recovery in that I’ve got these skills that I’ve used in the past to overcome challenges, issues, problems at work on the track, running, practicing.
Bill 17:17
And therefore, I can bring those into this stroke space and become curious about how to solve my problems in this space, how to occupy my mind, what else are you doing other than occupying your mind? I went into straightaway into nutrition like, okay, so I’m probably eating terrible food, I’m smoking, I’m drinking, I’ll stop all of that.
Bill 17:38
Let me do what I can do with as little effort as possible to control something. And for me, I could easily control my food, and controlling my food wasn’t about control. It was about doing what I could, with as little effort as possible, which meant that I ate less things that weren’t good for me. And I just increased the things that were good for me. So do you relate to that type of method of solving problems?
Dealing with uncertainty
Jason 18:10
Yeah, I think so I think if I’m understanding what you mean, yeah, I mean, I, one of the things that I’ve tried, I’m trying to be open, I don’t know a clear way to say this I’m trying to be open to what this experience has to teach me. Clearly, it’s not done. Clearly, I don’t know everything. And I can’t control everything. So I’ve really tried to be open to learning to worry about just the stuff that I can control.
Jason 18:38
I’ve always been sort of high strung and a warrior before and this really has been a lesson in there’s a million things on my list now that I could worry about, that are legitimate things to worry about, but it’s all wasted energy. So I like what you said. I try and just now worry about what I have control over. And not one of my best friends she calls it future tripping.
Jason 19:05
And so I tried to stop future tripping stop worrying about what might or might not happen. Stop worrying about what has happened. I mean, I told you I had a pinched nerve and for years I was going to the chiropractor, I can’t tell you how many times I have second-guessed myself and thought, did that contribute to this event? Did all of that net cracking did that cause the stroke?
Jason 19:24
The truth is, I don’t know. There’s no way to know it may have it may not have at this point, it doesn’t matter. I am where I am. I can’t control that what I can control is what I do today. Like you said my diet what I eat, whether or not I follow the doctor’s orders, whether or not I take time for self-care and to reflect and to slow down my life.
Jason 19:48
Another way that I do kind of what you were describing is I prioritize. Strokes are not uncommon and aneurysms are not uncommon but I’ve been told by several doctors my specific combination of facts in my case is very unusual. I have a literally have a team of doctors treating me I have so many doctors, I can’t even remember all of them.
Jason 20:12
One of the things that I’ve done is prioritize. And I even reached out to a doctor today and said, Do I really need to see this other doctor? I already have three different neurologists, they’re treating me already do I need 4 neurologist? You know what I mean? So I’ve tried to pare that down to and say, okay, what’s reasonable? What makes sense? I’m not going to ignore the doctor’s orders. But if I follow everything, the doctor said, my medical file is 500 pages thick at this point. I need to figure out what actually is reasonable and makes sense and is, you know, can I handle?
Bill 20:45
Yeah, it sounds like it’s time for focus. Rather than having everything going on at the same time. It’s just narrow the focus and just go for a couple of things that you can do that are going to support A, your physical well being, B your mental well being. So that’s really, really important for me. I did similar, I had doctors come into my hospital bed, the first hospital that I was taken to, and they would talk about me, and they wouldn’t include me in the conversation.
Bill 21:20
It used to frustrate me. So I left that hospital and basically sacked that team and hired another team, so to speak, went to another hospital, found another group of doctors who worked the way that I needed them to work, which was very small amounts of information, but very focused and narrow communication style in that this is what happened, this is what we’re exploring.
Bill 21:44
This is what we did. This is what didn’t work, this is what we’re going to try. None of the other stuff mattered. I just needed to know the details. I just needed to know the outcome or the goal that they had in mind. So then what I did is prepared myself so that I could support them, in them reaching that goal, which was to learn to remain still, I meditated, I changed my diet, I changed what I drank, I changed my relationships and how I behaved.
Bill 22:14
And what I did with the family and friends that perhaps loved me but I used to piss off all the time and yell and scream at and all of those things all that time that I had enabled me to step into this space that was calmer, therefore, my blood pressure would be lower, therefore, my stress hormone would be lower, therefore my heart rate would be better.
Bill 22:36
Therefore all these other things peripheral things would be impacted by me making this small changes. And that allowed me to be the best patient and I told this to my surgeon, and her team on the bed that are preparing before for surgery. I said to them, I am going to be the best patient you’ve ever had. I’ve done all the preparation work for you so that you can have to just deal with the problem in there, not this whole problem with a guy who’s losing his shit and is, you know, all over the place.
Bill 23:08
And whether they paid attention to that or not doesn’t matter, but it made me actually turn up in a better place. And therefore, I wasn’t getting in the way of any of the process. And it took me three years to get to that point. I had been at all the personal development courses that you could imagine up until that day.
Bill 23:38
But nothing really mattered until I took responsibility for me. And I started to change my life in very small ways that had massive, massive impacts. So it sounds like you’re very similar in the way that you’re approaching this. And I think that’s going to serve you really, really well especially going forward. Because stroke doesn’t go away the damn thing happens. And then for some reason, it never leaves people’s lives.
Bill 24:09
You know, people talk about their stroke their head 30 years ago, and they talk about it like it just happened. Some people talk about it, like it was the best thing that ever happened to them. That’s me I can get. I can say that now, but it wasn’t at the beginning. Some people talk about it like, it’s completely ruined their life still.
Bill 24:30
And it’s 20 or 30 years down the track. So you may as well if you’re going to be talking about your stroke, 20 years from now, you might as well be talking about it. From the space of this is what it taught me. This is how I change. This is how I evolved. This is how I adapted. This is how I became curious about new things I didn’t before and the fact that only it seems what only 11 or so months or 10 months into your process. You’re already on a stroke podcast who would have thought a year ago that you would have been talking about the topic of stroke on a stroke podcast.
Jason 25:06
Yeah, agreed, agreed. And I absolutely relate to what you’re saying. And it doesn’t mean that I’m like there yet. I mean, I have a lot to go through and a lot to learn, I’m sure Still.
Intro 25:16
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 25:40
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. 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.
Taking responsibility for stroke recovery

Jason 26:19
But I relate to what you’re saying. And one of the things that you said that I connect with is the taking responsibility for myself. There was one particular moment and early on in my recovery that was sort of a turning point. Which was when I first came home from the hospital after the craniotomy, I mean I was not in good shape. I was using a walker. I was literally so weak that I could not recline the recliner that we had bought.
Jason 26:46
So my husband and I bought a recliner because in anticipation of we knew I wasn’t going to be able to sleep in the bed. And I was so weak I could not even pull the lever to raise the recliner and I was literally being waited on hand in foot because I physically was that weak, but I also had it in my head that I couldn’t do anything.
Jason 27:11
And one of the early turning points for me was that there was a day where I realized my pill case was empty and it needed to be repopulated, and my spouse was working and was on a call. And I was gonna go get him to do it. And then I was like, no, I can do this. And so I got it. You know, I had visual issues from the stroke and whatever. So it’s hard for me to read the labels and stuff, but I was like, no, I can figure this out.
Jason 27:37
And I sat down, I lined up all the pill bottles and I lined up the pill case and it took me a long time, but I repopulated all the pills. And he came into the room. He’s like, do you need me to fill the pillowcase? And said no I did it. And he was like, oh, you did? And I was like, that was like an aha moment for me that like, Okay, this is what it’s going to take is I need to step up and even if it’s something that’s simple, I need to step up and start taking care of that myself, I need to be the one to call the doctors. I need to be the one to send the emails, it might take me longer to do it. But that’s part of the recovery.
Bill 28:12
It’s the marathon analogy. I mean, you don’t start the marathon thinking about the last step on the marathon that’s gonna get you over the line, click, there’s the time. That’s not the how you start them out. You start it with the first step. And you’ve just got to make each next step. And you’ve just got to get to the end of the marathon. And in Episode 108, which is the one that I released a couple of days ago, I released it because I recorded it I think for Episode 27, which was a number of years ago.
Bill 28:47
I interviewed a gentleman called Dr. Michael Merzenich, who, he’s the one of the founding fathers of the current research that studies that have gone into neuroplasticity. And we speak about neuroplasticity there’s this positive thing that we can use neuroplasticity in our favor, we can use it to benefit us to learn to rewire the brain.
Bill 29:10
But neuroplasticity also works in the opposite way, we can rewire the brain to support negative thoughts and support negative processes and physical actions. So that thing that you did, it could have gone one way or another for you. If it went the other way. It meant that you were learning how not to do things. You were learning how difficult it was, you were learning how not to struggle through your learning how not to take responsibility.
Bill 29:40
So that is one of those things that people don’t understand they are in a vulnerable state, their brain is changing rapidly trying to adjust and it’s gonna take the path of least resistance and if the path of least resistance is the one that you chose to not do anything, it’s going to go fine. We’ll do that one. Then you were not being able to do things and then that stays with people and sometimes that gets in the way of recovery way more than the physical ailments.
Jason 30:12
That’s fascinating. I never thought of neuroplasticity from that angle. I never thought about the fact that it can go both ways. That’s fascinating.
Bill 30:19
Yeah, we can control neuroplasticity one way or another. What we choose determines the experience that we’re going to have, you know, so 108 is the episode Michael Merzenichis an amazing guy. They invented the world’s first cochlear implant, which was back in the 90s. And, and at some point, they had an aha moment where they realized that the cochlear implant is pretty much useless if the brain doesn’t change, to adapt to listening through an electronic device.
Bill 30:52
And that was what made the cochlear implant successful it was that the fact that that it had the brain on its side and the brain used the electronic devices to listen. So it changed the game for what it meant about how to support people overcoming conditions that were so, serious that hearing was gone, for example, and the guy that Michael worked in conjunction with or at a similar time with, that was also studying was a guy called Paul Bach-y-Rita and Paul Bach-y-Rita was trying to support people to overcome vision loss with mechanical devices strapped to the forehead.
Bill 31:31
And they were able to successfully get a blind person, somebody that’s been blind from a few years after their birth to be able to see a garbage bin on the other side of a room and throw a basketball at that garbage bin and actually get it in and the way they did that was this device on the forehead created different responses depending on where the hand was. And where all the certain things were and somehow created a black and white image in that person’s brain to be able to show them that, in fact, in the distance is this garbage bin, and you’re holding the ball here.
Bill 32:23
And if you do that, you’ll be able to get it towards the bin. And then the more they practice, the more that person was able to calibrate distance and the amount of time they needed and the effort they needed and so on to get the ball and push it in through the air into the brain. So neuroplasticity is amazing. But what people don’t realize is they are activating neuroplasticity when they make a decision that’s not serving them as well. And let’s not wire that stuff in.
Jason 32:52
Yeah, there’s already enough of that stuff in the world.
Touch base
Bill 32:55
Especially now we’re going through the craziest time ever. You know, I have never had so much in common with every person on the planet as I do now, lockdowns, you know, the fear around COVID-19, and all that kind of stuff. And we can get ourselves all worked up and have all that stuff to worry about as well as how we’re recovering from a stroke or we can just worry about recovering from a stroke and what the next solution to our problems are. I’m curious about your family, your husband, and the people that were with you at that cafe when this thing happened. Have you had a conversation with them about what they went through?
Jason 33:43
Yes, we’ve had several conversations about that. I think that was not just a terrifying experience for me. I think it was a terrifying experience for them too. I’ll never forget the look on my mom’s face. When you know when Jeremy pulled out the phone and said I’m calling 911 I’ll never forget the look on my mom’s face. And you know, there’s a lot I don’t remember from that day, but I remember that.
Bill 34:13
Yeah. What are some of the things you mom has said about that time? Has she even spoken about it?
Jason 34:19
A little bit. On the humorous side of things, you know, trying to look at the bright side of things. One of the things that we’ve all kind of talked about since that incident, was that my mom has this sort of curious combination of in the actual crisis moment in the emergency. She’s cool as a cucumber. She handles everything, she just gets it done. But she had several emotional breakdowns throughout the week.
Jason 34:47
Just weird odd times that you wouldn’t expect. So like in the moment when we’re calling the ambulance and I’m being loaded and I’m being taken in for surgery and all that. She was very, very on top of things. But then in just bizarre moments in the hospital room when we’re sitting there, you know, eating lunch talking, she would break down and start crying or the nurse would come in and check on me and she would crying.
Jason 35:12
So yeah, I think it’s I think there’s a lot that went into that. And, I think, you know, it’s hard to see anybody that you care about going through something scary like that. And then I think the combination of that and also trying to stay strong for them, I think is difficult. I have a younger brother who is 18 years younger than me. And, you know, we never lived together because by the time he was born, I was out of the house living on my own.
Jason 35:40
So we have sort of an uncle-nephew kind of relationship. And I had never seen him cry. I don’t think he had ever seen me cry. And I was told by several family members that in the waiting room in the hospital when I was having a craniotomy that he broke down and had a pretty big moment because the surgery wasn’t going well. They didn’t know if I was going to make it out of the surgery. It’s been interesting to see everybody’s reaction along the way.
Bill 36:10
Yeah. Did you find yourself going into allaying everyone’s concern mode? I’m from a big Greek family. everyone loses their shit. Yeah, they pretend that they’re okay. They pretend that everything as well, but they can pull it off like they’re terrible. So I spent most of my time because I was so comfortable in my own approach, my nearly three-year preparation for surgery because I was so comfortable. In my approach, I found myself constantly allaying the concerns of everybody else and saying, you know, it’ll be right, I’m fine and all that kind of stuff. But I really believe that I wasn’t just telling them for the sake of telling them. Were you playing that role as well?
Jason 36:59
Maybe a little bit. I think that what I found myself doing more than what you’re describing is it was such a frightening experience for me, especially somebody who had never had I never had any health issues before that I’d never even spent the night in the hospital before this happened. It was so frightening that there was a period of time where I was afraid to do anything on my own, especially after the craniotomy.
Jason 37:29
So I had a lot of family members sort of rotating babysitting duty. Because I was afraid to you know, I legitimately wasn’t capable of doing certain things, but I also was afraid to be alone too. And what quickly developed was a sense of frustration at being I was frustrated at being treated like I was helpless but I also felt like I was helpless.
Dealing with emotions
Jason 37:53
Yeah, and so what quickly develop those I would get mad at myself for feeling like I was helpless and feeling like I needed to help. And then when family members would try and step in and help, I would be like, I don’t need that leave me alone. And it was this weird sort of circle that it took me a while to get out of.
Bill 38:11
So you’re helpless. You’re happy to have the help, but at the same time you were angry for being helpless and having help.
Jason 38:21
Exactly, which of course, is completely fair to my family members that are trying to help.
Bill 38:29
So it’s such a bizarre space to be in. I remember my dad, and I’ve said it before in other episodes, being my designated driver for everything. And he’s such a shit driver, and I was just so frustrated to be in the car with him. Because, you know, I’m a typical backseat driver, you know, telling people what to do and where to go and all that type of thing.
Bill 38:50
And now I had my dad driving me around, he was doing me this amazing favor. He was just, he couldn’t do anything else but he could drive so he said, you know what? I’ll be his driver, and I just used to get so annoyed and frustrated with him. And I just think back at how terrible that was. But I get it. It’s just loops. You create these loops and you sometimes can’t get out of them.
Bill 39:12
You’ve just got to ride through them. And I remember even yelling and telling my wife, she did the worst thing in the world because she parked in the wrong car space. I mean, I couldn’t drive, I couldn’t do anything. And she parked in the wrong car space, and I told her off about it. I’m pretty sure I brought her close to tears.
Bill 39:32
It was such a terrible time, but it was part of the learning process and she’s so mild-mannered that she put up with most of my junk and most of my stupidity. And then at least I had the ability to recognize later that I had been an idiot, and that an apology was required and sometimes more than one. Had Jeremy deal with all your crazy you know, behaviors?
Jason 40:06
Yeah, I’ve definitely had some of those apologies required moments to Jeremy to my parents to friends around me. Jeremy’s very mild-mannered, very calm and relaxed personality. His most likely response in those moments is to just quietly get up and leave the room and come back when I’m calm. Which is the signal to me that I’m going off the rails.
Jason 40:37
I had one particular moment with one of my best friends who just being kind and wanting to be supportive, came over to spend some time with me and brought a big huge box with all these cupcakes. And I snapped at her and I said, I said something along the lines of like, what are you thinking like I just had a stroke because of a blood clot In my brain and like you’re bringing me junk food, I can’t eat this junk food. And it was like, you know, and it was just completely unreasonable like all I had to do was say thank you I’ll eat it later and then not eat it. It was a completely unreasonable response so I’ve had those moments with my parents as well.
Bill 41:18
Yeah. They just bring food because food is such an emotional thing, isn’t it. That’s how people connect with people over a plate of food over a coffee. So they just do those things that make them feel emotionally a little better. And they don’t realize, but nor should they realize they’ve never had a stroke. We don’t want them to have a stroke. We don’t want them to know what it’s like.
Bill 41:39
So, it’s kind of good when they are so oblivious to it, because that means they’ve never had our experience and that’s what I got. That was the lesson one of the lessons I learned and how I was able to modulate my advice giving at that moment when they would just try to be nice. Tell me about what else you experienced. Do you have fatigue, cognitive fatigue and those types of things are you finding yourself hitting these little virtual walls during the day that you have to stop and rest for?
Jason 42:22
Yes, definitely more so after the TIA, I had it. I had it in the beginning after the original stroke. It was much, much worse after the craniotomy. A lot of the symptoms that I’ve experienced are actually from the craniotomy not from the stroke. At least as far as I can figure. A lot of the symptoms that I experienced are more from that surgery than from anything else.
Jason 42:45
But I did have the fatigue from the stroke as well. It’s much more pronounced after the TIA and I’m only two weeks post-TIA so it’s very early. But yeah, I’m finding myself sleeping a full eight and a half, nine-hour night, and then still having to take a nap during the day and then still feeling tired. I’m still kind of in that stage. I had some damage to my retina from the stroke from the original stroke. I can see I can read I can work on the computer, but it definitely makes me more tired than it did before, staring at the screen, especially, type on the screen is very difficult.
Post-stroke diet
Bill 43:29
So I imagine you’ve already read up to get an understanding of the things that will stimulate the brain, like screens, like sounds like lighting. So if you minimize that, when you’re feeling the way that you’re feeling, it’ll get better. And one of the things is that you need to look into and you need to research is the right kind of diet for decreasing inflammation.
Bill 43:56
And I’ll give you the very basic version of that. It’s very local carb diet, especially people recovering from a brain injury, the diet needs to be high fat. And what I’m talking about fat, not KFC, McDonald’s type of fat, like just, you know, avocado, those types of amazing fats and fats that come from protein from animal fats, if you’re that way inclined, and low carbs, because what carbs do is that they’ll spike insulin, they’ll spike cortisol, they’ll increase blood pressure, they’ll increase all these things in the body.
Bill 44:33
And those things as they spike and increase, they cause the energy high, you get that boost, and then you have that real quick energy drop off when they get used or sorted out. And then that puts people into a greater space of fatigue while the brain’s already fatiguing. It creates this added level of fatigue. So if you want to minimize that, then that’s a good way to go. You look at a book called Grain Brain by Dr. David Perlmutter.
Bill 45:05
And you look at a book called Eat Fat Get Thin by Dr. Mark Hyman. And I know that the book says Eat Fat Get Thin. And it’s not about weight loss, actually, it’s actually about how we metabolize food and how the body deals with certain foods. And then why fat is a good thing to add to your diet, especially saturated fats that come in a form of vegetable or from animals that have been pasteurized and all that kind of stuff. So I’m not sure. Have you had some time to look into that yet?
Jason 45:38
No, you know what I find interesting, and Jeremy has commented on this a few times as well. All of the doctors that I’ve been treated by and I’ve now been hospitalized at four different hospitals. I’ve seen probably 30 doctors of all different specialties. Not one person has mentioned diet to me and I found that interesting.
Jason 46:00
And I didn’t have tons of concerns about that. Initially, because I was a marathon runner, I was already a very healthy eater. But now after this most recent episode and trying to sort out and figure out why it happened, I’m definitely more curious about that because nobody’s mentioned anything about diet to me.
Bill 46:19
I’ll tell you, I’ll give you the hint, I’ll tell you why. I’ll give you the tip of the reason that doctors don’t have that conversation is they’re more interested in keeping you alive and getting you out of the hospital. And they do that well, so they don’t have time to look at diet. However, in Australia, there was a Doctor who, and I’ve interviewed his wife, Belinda Fettke. And I’ll add these links to the podcast show notes so people can find them easily.
Bill 46:47
And I’ll send you a couple of links as well. Basically, what happened is this particular surgeon, Dr. Gary Fettke, was somebody who experienced a brain tumor I think it was somewhere in the front of his brain somewhere there, pituitary tumor. And as a result of him realizing that his time was potentially limited, he started to research how he can support his brain, while he was going through all the treatments, he found that a low carb diet was going to support his brain.
Bill 47:21
There was no guarantees of solutions or overcoming everything. And he started to feel better while he was recovering, also going through the medical process, and a number of years after he started feeling better, he started to tell his own patients who were diabetic patients, and he used to be amputating their, their limbs because they had diabetes, and it got so bad that he started telling them about diet.
Bill 47:48
And as a result of that, somebody didn’t appreciate him as a doctor who was not a qualified nutritionist doing that and they took him to court. And while he was recovering from a brain tumor, and all the things that were associated with that, and also trying to treat his patients he was being vilified and taken to court and sued, because he was giving nutritional advice.
Jason 48:17
Oh, good, Lord.
Bill 48:18
So now you know why that’s the reason why now over the years, he beat all of those charges. He was not sued, and he’s now giving nutritional advice to his patients, and therefore, he’s not amputating as much as many limbs as he used to. And it’s an amazing thing. But that is one of the issues as to why doctors don’t do that.
Bill 48:41
And what that means is that we miss out on really important information very early on in our recovery. And one of those things is the nutritional part of it. And I remember being almost beyond the almost three years into my stroke journey. While I was recovering from brain surgery, the craniotomy and I was in the hospital and I was learning how to walk again. And they were bringing me you know, white bread with margarine, with sugar infested, custards, and all these types of foods that I knew were doing nothing to support me getting out of the hospital sooner, so I stopped eating their food.
Bill 49:25
And I asked mum and dad to create meals for me and bring them in on a daily basis, and that’s what I ate. And when I was in that space, it was a number of years ago. So it was very early on in the whole low carb nutritional kind of thing. And there wasn’t enough information. So I just spent the majority of my time researching and then I created the podcast so I can share this kind of information and bring those types of people in.
Bill 49:53
That is one of the things that we can control the most, our diet. And we can make a massive difference to how we support our brain in the recovery. And that means that we can have better outcomes, get out of the hospital sooner and get back to work sooner, get back to a productive life sooner. So I love that you’re so curious and you’re willing to look at anything. Because these interventions don’t cost us anything to do. We don’t have to employ anybody to pay anybody, we just have to buy less things or different things and put different things in our shopping basket.
Jason 50:34
No, I definitely agree with that. I mean, it is kind of that taking responsibility for your own recovery kind of idea again, and I think, one of the reasons also why doctors don’t necessarily address that issue is I think a lot of doctors, maybe not all of them, but a lot of doctors don’t have training in that area either. They know their specialty, they’re good at their specialty.
Jason 51:00
But I know, one specific neurosurgeon that sort of my main doctor, absolutely love this guy. He’s a fantastic doctor for so many reasons. And one of the things that I appreciate about him is he knows what he’s an expert in and what he’s not an expert in. And we’ve had conversations where I’ll ask, you know, I’ll ask him X, Y, and Z. And he’ll say, that’s not my expertise, I really would prefer you talk to a specialist about that. And then he provides me with the referral to that person. And I appreciate that because if you don’t know the answer, I don’t want you to give me a bullshit answer you know what I mean?
Bill 51:38
I get really annoyed about it because they spend so much time, money, effort, resources, technology, all the things that go into bringing a stroke survivor back to life and back to the world and then they undermine all of that effort with not having this next crucial part of the puzzle.
Bill 52:04
And it’s a similar thing that some of those doctors do, who go out of their way to keep us alive, open our heads up, you know, take parts of our brain out and do all these things. And then they say something like, you’ll probably never walk again. You know, what’s the point of doing all of that? What’s the point of going to that much effort to get me out of hospital alive and then potentially tell me that I’m never gonna walk again.
Bill 52:36
It might be the case, but don’t tell me that. Tell me that with a lot of work and effort. I might walk again, and I might actually achieve that. And that’s kind of where I go on this tangent and get so passionate about it. And you can hear about that. In all my other podcast episodes. I always have something to say about these small bits of the puzzle that they just missed.
Bill 53:00
That could just dramatically improve the lives of a lot of people. But I know they’re doing their best. And I’m grateful for them because if it wasn’t for them, you and I wouldn’t be here.
Jason 53:11
Absolutely.
Bill 53:13
So I want to as we come to the end of the episode, I want to ask you about why it was important for you to get on the podcast. Why did you reach out?
Jason 53:27
I recently, it was very recently, as a matter of fact created a specific Instagram profile that’s just for stroke and aneurism survivors because when I was first diagnosed with this, and I was first trying to figure it out, I had never I didn’t personally know anybody that was a stroke survivor. I didn’t personally know anybody that was an aneurysm survivor.
Jason 53:48
And I was sort of reaching out trying to find information. I couldn’t find anything positive. Everything that I found was scary and negative and horrible. And doom and gloom. So I created an interview. profile that was specifically for stroke and aneurism survivors. And the intent was to be positive and share what’s working and what you know.
Jason 54:09
And then it’s just in its infancy. I mean, I have very few followers because I just created it right before you and I were sort of introduced. And that’s also why I’m writing the book right now about my journey as well to kind of share, because I recognize I’ve been extraordinarily lucky throughout this journey. A lot of people that have been through what you and I’ve been through, are not as lucky as we have been.
Jason 54:32
But there are a lot of things that don’t have to be as scary that can be more positive that can be, you know, they can give you some hope and some future. So that’s why anything that I can do that can if there’s somebody out there going through this that maybe doesn’t have the level of support that I do, that hasn’t had the positive experience with the doctors that I’ve had, and just need some direction.
Bill 55:00
Yeah, I think that’s a great thing. And it’s so, so common you see it again and again and again stroke survivors that, you know, in the community that we’ve got on Instagram. They, go out of their way to support other people. And they might be doing it tougher than anybody. And that’s just so interesting and amazing to me that that is the first port of call for most stroke survivors is to make it about somebody else.
Bill 55:35
And it’s so fascinating and bizarre at the same time and it’s such a beautiful thing that comes from stroke almost immediately people think about okay, what have I learned that would help somebody else. It’s just, it leaves me speechless, and it happens all the time and I still am not used to that fact. I got to that stage as well.
Bill 56:01
But it took me quite some time to get there. And, it was because I had to solve a lot of problems on my own before I could start helping other people. But then when I realized that I had this information, this is not the kind of guy that I was before. I didn’t keep that information to myself. I thought, No, this could be handy for a lot of other people. Let me get it out there. And let me tell them about it. So I really relate to what you’re saying. I can appreciate why you’re doing it. And I think it’s an amazing thing that you’re doing. Have you got a title for the book yet?
Be Here Now

Jason 56:34
I do. In fact, the rough draft is finished. I’m in the editing and revising process. Now. The title of the book is Be Here Now. And the thinking behind that the reason I’ve called it that is because, one of the many, many, many lessons that I’ve learned throughout this whole process. Probably the most important lesson is to be present to not worry about the past. not worry about the future, live right here right now. And that’s why I called the book that.
Bill 57:05
Why is that important? In a few words, tell me why is living here right now important and how does that help you in your recovery?
Jason 57:17
Because I don’t have control over what happened. I can’t change the fact that I had a stroke. I can’t change the fact that I had the aneurism that I had the TIA. So worrying about that is not helpful. And I don’t have control over what’s going to happen in the future.
Jason 57:34
Worrying about what may or may not happen is wasted energy and is probably detrimental to my health. I have control over right here and right now I have control both from the standpoint of my recovery, but also from the standpoint of just enjoying the moment and not wasting the chances that I’ve been given in you know, I’ve been really fortunate. I don’t want to waste it.
Bill 58:01
That sounds like a perfect way to end this podcast episode. Thank you so much for being on the podcast for reaching out for doing all the things that you’re doing for writing the book and for taking responsibility for your own healing journey and your own recovery. And I look forward to the book getting finished. I’d love to have you back on the podcast when it’s done, so that we can tell other people about it and we can talk about it. And I just wish you well ongoing.
Jason 58:32
Thank you so much.
Intro 58:38
Discover how to heal your brain after stroke. Go to recovery after stroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experiences.
Intro 59:00
We do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 59:17
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 59:33
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.
Intro 59:49
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.
Intro 1:00:06
Medical information changes constantly. While we aim to provide current quality information and our content, we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.
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1 hr 1 min
August 10, 2020 The Power Of Suffering – David Roland
David Roland is the author of The Power Of Suffering, a book written after he experienced a Stroke that lead to his career as a Psychologist coming to an end due to stroke and the effects of previously undiagnosed PTSD
Socials:
www.instagram.com/davidjroland/
www.simonandschuster.com.au/books/The-Power-Of-Suffering/David-Roland/9781760850128
www.davidroland.com.au/the-power-of-suffering/
Highlights:
01:02 Introduction
05:50 Life after a stroke
13:34 Dealing with post-stroke fatigue
20:42 The change after surviving a stroke
26:22 The Power of Suffering
36:36 Physical and emotional pain according to David Roland
50:19 Why secrets can cause health issues
1:02:18 David Roland’s professional mindset before the stroke
Transcription:
David 0:00
You know, if we look at the major religions, they’ve all talked about suffering as a means of growing or developing wisdom, or a form of redemption. So this idea is actually as old as the hills. As far as we know, humans have been experiencing this in some way, forever. But certainly, you know, in documented history, there’s plenty of examples of that.
David 0:25
But now we’ve got a title. And we’ve got a research field like scientific papers and so on. So we can actually say it really exists. So but when I was working as a clinical and forensic psychologist, we just saw Post Traumatic Stress Disorder as a bad thing. And the idea was that you had to get back or try and get back to the level you’re at before.
Intro 0:51
This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction

Bill 1:02
Bill from Recoveryafterstroke.com. This is Episode 109 and my guest today is David Roland. David is the author of the book The Power of Suffering. He has a Ph.D. in clinical psychology and is an honorary associate with the University Center for Rural Health at the University of Sydney. He is a founding member of compassionate mind Australia.
Bill 1:24
And David experienced a stroke and later wrote his first book, an autobiography called how I rescued my brain. Today’s episode is about his experience with post-traumatic growth. Now when you get to the end of this episode, whether you’re watching on YouTube, or listening on your favorite podcast app, please do me a favor and share this episode in other groups you hang out in.
Bill 1:44
This will help someone that is doing a tough at the moment, feel a little better about the journey that they are on. Also, if you feel this podcast makes a massive difference to you, and the stroke community, please do me a favor and give the show a five-star review on iTunes or wherever you download your podcasts from. Now, It’s on with the show. David Roland, welcome back to the podcast.
David 2:06
Thank you, Bill. It’s good to be here. And we’re both still here. How about that?
Bill 2:11
That is an amazing thing that we’re both still here.
David 2:14
We’re doing something right. Yeah, you’re in lockdown, aren’t you?
Bill 2:18
I am in lockdown. We’ve gone into stage four lockdown the last couple of days and we’ve been in lockdown for what seems to be forever but it has gone relatively quickly. This second lockdown has been a little bit more frustrating. A lot of people are going through some difficult times there’s a lot of people that are going to lose their job. And it’s not dissimilar to what we went through as stroke survivors when we had a stroke and couldn’t work, couldn’t earn money and find ourselves in a really difficult position financially.
Bill 2:52
So it’s not unfamiliar to me, but it’s unfamiliar to a lot of other people and I know what’s going to come of it for some people. will be this traumatic experience, we’ll leave some underlying trauma there and, and there’s a lot of talk around about whether or not governments are taking into consideration the long term psychological effects on people who are going through this lockdown and then how they’re going to come out of that. So I think it’s a perfect time for us to have a chat.
David 3:30
Yes. And I think what we want to impart here today Bill and I can certainly impart and you’ve had the experience to of losing everything, being in a very scary situation, and survived and actually grown. And so I think that’s the essential message for today. It’s very scary, very distressful time for many people. But you and I are testament to the fact that you can survive and you can grow from the experience. Even If it doesn’t feel like it when you’re in that survival stage.
Bill 4:04
Yes. And if you’re coming to this podcast and you’re the first person, it’s the first time you’ve listened to one of those podcasts. This is Episode 109. Right? But there’s 108 other episodes of people who have gone through stroke, and overcome great odds and survived and thrived and done a whole bunch of amazing things. So they are all amazing stories, and they’re all at different stages. But I like the way that you organized your story in your latest book.
Bill 4:30
But before we talk about your latest book I want to talk about the last time you were on the podcast was Episode 37. And we spoke about How I Rescued My Brain. The book had just written that I had found in a bookstore in Melbourne that I picked up and as soon as I took it outside, I started reading it was about nine o’clock in the evening. And when I got to the first i don’t know i think it was three pages in I was in tears and crying.
Bill 5:00
And I was with my wife, and she just didn’t understand what was happening and why I was in tears. And it was basically because immediately what I did was, I understood that you were somebody like me, you had been through something similar to me and I related to your story, but at the same time, as I felt some sadness, and sorry for you, in a way, I also really loved my experience.
Bill 5:29
And that reliving of my experience was what I didn’t realize was a little bit of underlying trauma that’s coming to the surface to bubble up and release itself. And then gives me an opportunity to chat to my wife about it and, get beyond it, and it’s an ongoing journey. What are you been doing since then?
Life after a stroke
David 5:50
I guess we’re talking 10 years now since the stroke. And I’ll also add that there was psychological trauma before that which came out of my previous work as a clinical and forensic psychologist. And one of the big losses for me, besides the effect of the brain injury was I lost my former career, I can’t really go back to working how I used to, to work.
David 6:15
And it took me, you know, about 18 months post stroke to realize that I really had to pivot. You know, like you were saying, We’ve done this before, we’ve had to change direction. So I was largely for the first five years after the stroke just getting well, as good as I could be. And that’s when I discovered that writing was autobiographical writing was one of the healing things that you can do.
David 6:41
And in How I Rescued My Brain, I explain a bit of the brain science behind that why that is healing. It helps us to make sense of the experiences that we’ve gone through. But the unexpected thing that happened for me Bill was and it’s not in in How I rescued my brain is that I decided to take up dancing as a new activity for brain health.
David 7:07
Now, I’ve always been a musician, and I used to play in dance bands. But I was always used to being on stage rather than on the dance floor. And I just learned or read that dancing was one of the most effective ways to activate your brain, and particularly, partner dancing. So in the very beginning, a friend told me about five rhythms dancing, which is five different reasons it starts slow, gets faster, and then it slows down again.
David 7:37
And the idea is, with that type of dancing is to take your head out of the dancing, so allow your feet to move first. Or if you like, let your feet or your body do the talking rather than your head. And you know, I had to overcome a lot of self consciousness being in a room for lots of other people that were just very uninhibited and going wild at different points.
David 8:01
But remarkably, what I found as I got used to it and became less self conscious, was that all the grief, the sense of loss, the trauma, despair, you know, all those really strong feelings. I hadn’t realized how lodged in my body they were. And as I would move to the music, so my body’s doing the talking rather than my head saying, I’ll do this move.
David 8:24
It was like a corkscrew of energy just coming out of me. It was so visceral and so real. And I just did not expect it at all. And I would go in a week after week and it was such a healing experience, that after a while, it felt like I’d really emptied out of all that gunky stuff. And I started to experience joy. Joy became the motivation then to keep it up. But I actually wanted at that point, I thought I’d like to start holding a woman again because I’ve been divorced by this stage.
David 9:00
And I wanted touch again, but non sexual touch. And I wanted to do Latin style dancing because I just really love the Latin rhythm. And the first year I went along to the local salsa classes, and it was really, really tough because I could get the rhythm, but I couldn’t remember any of the patterns that we learned. It’s like I would do an hour of class.
David 9:25
And if you told me just name one thing you’ve learned in the class I couldn’t, and I had huge mental fatigue is, you know, stroke survivors we know. So I did that for the first year. The second year, I managed to learn a few paterns. Remember a few paterns. And then the third year, I felt confident enough to go on the social dance floor because I could remember a handful of paterns and very slowly worked my way up.
David 9:52
I mean, you know, the Latin dance, scene they don’t play music super loud, but every now and then I have to go out and give my brain a bit of a relief and come back in again. So now I dance with joy. And last year I went on a trip to Cuba, the dance trip with my local teacher. And we even made a video. I’ve got now a video of me learning some of the Cuban dance styles and then doing a sequence with one of my main teachers at the very end.
Bill 10:25
I saw that video it was a great video. And one of the things that stands out to me, of what you just said is that it took you three years to get to that point. And it’s very similar to a comment that was made on episode 106 by Kelly Studebaker who’s a power lifter and she does powerlifting with one side of her body because the other side of her body doesn’t work so well.
Bill 10:49
She has a deficit on the left side I think it is and therefore her arm can’t grip a barbell, but she talks about how it took her five years years to get to that point where she felt comfortable to compete. And she never thought about competing. She just thought about doing the process of lifting heavier and heavier weights and learning how to do that with half of her body, effectively.
Bill 11:17
And then when she got to a certain point, somebody challenged her, I think it was and it made her go, well, okay, maybe I can compete in some way, shape or form. And she did. And that was a real big moment for her. So I want to emphasize the time that it takes and it took you three years. So what was it like to go to Cuba, and finally, put the cherry on top of this whole experience?
David 11:45
Where you got to understand that Cuba was another challenge in itself. I hadn’t done long haul international travels since the stroke. And it’s a big trip from Australia to Cuba with a stopover in Canada. And I knew that Cuba would be noisy Because they, they love their music, they play music everywhere. And it’s a Latin society, so they stay up really late.
David 12:10
So what would happen is, you know, we would have dance classes for two hours in the morning. Now, there’s no way I could have done two hours of dance classes at all, let alone once a week, you know, in the beginning one hour, it just completely knocked me out. So amazing that I could do two hour dance classes almost every morning, the three weeks that we were there.
David 12:34
But then in the evenings, you know, you’d go out at 10 1030 because that’s when things kick off and go to a show or a dance or dance club or a live concert. And, you know, dance away. Well, I just couldn’t keep that schedule up. But I made sure I did the dance classes in the morning because the teachers were just so superb.
David 12:55
You know, the quality of teaching I knew would be rare to find in australia so I made the most of that. And I would go out in the evenings, you know, every second evening, something like that, you know, others in the group, we’re going out more often. So that was the big challenge for me was the mental fatigue and every now and then particularly towards the end, I get real overload and I would just have to hibernate in my room. And the dance teacher understood that you know, I needed some quiet so she often made sure I had one of the quieter rooms where we were staying in people’s houses.
Dealing with post-stroke fatigue
Bill 13:34
Yeah, that’s amazing. I go through the same kind of experiences with fatigue and the fatigue sometimes interferes with my progress in that I want something to progress quicker, and it doesn’t and then I get frustrated and annoyed. And, and then that creates a little bit of a loop of you getting stuck in feeling sorry for myself again. How do you deal with fatigue? And how do you come to terms with what is your process of dealing with it?
David 14:08
Look, it’s a difficult one, isn’t it Bill? You know, because, you’re the same as me, I think, you know, you’re achievement-oriented, curious, you like getting out in the world and doing things. So it doesn’t come naturally just to pull back. I have to pull back more often than I did pre-stroke. So I recognize my patterns of fatigue.
David 14:32
I know which activities to do, which time of the day, like last year, I was pretty much writing the whole year. And I would start work, you know, sort of around nine in the morning, and I clock off. I have a big lunch break with an afternoon nap. That afternoon nap really, really helps the clock off, you know, around 334 in the afternoon, and I’m totally mentally shattered by that point. So I felt That managing my mental energy cycle is one thing.
David 15:05
And then the other thing is keeping up intensive exercise. So whether dancing is actually very intensive. But also I would go to the gym or I do a lot of swimming, sometimes swimming squads or swimming in the ocean. And for some reason, I don’t understand the biology of this, but if I do intense physical activity, and it doesn’t have to be for a long time, it seems to clear my head quite a lot and get rid of quite a bit of fatigue. But typically in the evenings, I can’t do anything that requires a lot of concentration. So it’s really just getting to know yourself and finding those handles or leavers, which lift you up, you know, when you come down.
Bill 15:50
I can relate to that being able to get through a certain amount during the day and then almost being completely wiped out at night is very familiar. I’ve got things to do and there’s a to do list. And, the things early on in the day get done on the to do list but then some of them have to creep over to beyond that four or five o’clock mark, they just don’t get done. They have to get done the next day and no matter what.
Bill 16:15
So I never have big to do list but I have noticed myself being in a space of something not getting finished for 2, 3, 4 or five days just because it just can’t get done. And it’s not because for lack of trying or I don’t want to do just absolutely, positively physically cannot get done. So that’s familiar. The exercise thing is interesting because before COVID I went and joined a gym, and I thought that I’m doing it for the social part, but also for the exercise part.
Bill 16:48
But I don’t want to commit to a gym membership or long term thing or three days a week only half an hour. A week on a Saturday morning because That was going to give me, that physical version of exercising. And it was going to give me all of the benefits that I get from that and then the interaction with other like minded gym kind of people.
Bill 17:14
But then it would take me three or four hours to recover from that physically, but my head would be okay, as in my head would be okay for that day and the day after no problem. It was this very different version of experiencing my body one way, half an hour of pretty intense exercise would wipe me out physically, but not mentally. And then other days. sitting in front of a computer would wipe me out mentally and physically.
David 17:44
Yes, So I think you’ve found a pattern that’s working for you. with how things are, I mean, you know, cuba showed me how much I’ve advanced. You know how much I could handle noise And, you know, I’d have sort of mini breakdowns as I say, I just have to withdraw. Which is almost impossible in Cuba because there’s music, or they talk really loud as well.
David 18:14
But I, you know, you asked me, you know, is that the cherry on top it was, it was the cherry on top because I did that challenging thing. I’ve always wanted to go to Cuba. Originally it was to play the music, learn the music, because I played a lot of guitar. But now it’s more the dancing and the social interaction. You know, I learned a bit of Spanish and I was trying to practice my Spanish so that it was achieving that goal. But it was also the joy of dancing and learning from just amazing dance teachers and being around a culture which celebrates music and dance and the arts more generally.
Bill 18:55
Yeah. There’s a lot of work being done. I know people are searching and studying the area of music, in rehabilitation and in therapy, as well as dancing and all that type of thing. So I know there’s a lot of positives to come out of it and it makes sense because dancing releases endorphins and you know other feel good hormones.
Bill 19:23
And I imagined so does music listening to it evokes memories and pleasant times and amazing things. So it just makes sense that these things help and I get a lot from music and sometimes when I can listen to music, I like to listen to the music that I used to listen to when I was a kid that is high in energy, you know, really something that I would have been doing at a nightclub while I was dancing, although I’m not able to specifically dance right now because I don’t often dance alone at home.
Bill 19:53
I might with my wife, but I don’t alone at home is not where I used to do that. But the music still puts me in that place, and allows us to allows me to release some of those feel-good hormones, you know, and I might do some crazy moves like this from time to time. So it makes sense. I’m glad that you did that. And you went on that trip. Because it does remind me of some of my experiences as well, which is that big goal that you create out there in the future, and then you just somehow work towards to get to, and I think stroke survivors should have that big, long, distant goal that they focus their energy to get to, even though it might take them a long time to get there.
The change in David Roland after surviving a stroke

David 20:42
Yeah, and I would point out that the Cuban goal wasn’t a goal. In the beginning. It was just about getting Well again, and you know, it’s an exercise to do with brain health and but it led into this new direction, which I hadn’t expected. So I think that moves us on then to the new area that I’ve just written about in my new book, The Power of Suffering, growing through life crises.
David 21:06
Is that we do change. After we survive the intense suffering that we’ve been through, we do change. And we can change in a lot of positive ways. It’s remarkable. The number of people I’ve spoken to who’ve had some sort of loss, whether it’s a physical loss, or it’s a social loss, or it’s a financial loss, or it’s a loss of health.
David 21:30
They’ve lost something that I never expected to lose. And it’s devastating in the beginning. And for some people, they, you know, for many people, it feels like how am I going to survive this. And my, you know, my simple tip there is really just point your nose in the direction that you think you need to go in that day. And put one foot in front of the other and give yourself you know, do it gently.
David 21:55
So give yourself Pat’s on the back and allow the fact that you don’t always have a great day. And you know, that was like that for quite a few years. I’ve started to value relationships a lot more like with my daughters, with my friends with my family, I realized how important they had been, you know, the social connection through my survival period.
David 22:24
And I just valued them a lot more. And I also noticed that I was enjoying just simple pleasures, a lot more than expensive pleasures, like it wasn’t like I needed to go on an expensive holiday. Not that Cuba was cheap, but that was the first expensive thing I’d done. But it was for the experience of connection and the joy of learning and you know, the music and then also that opening to new possibilities, like I was saying, you know, now I’m a full-time writer and speaker and I could not have imagined that 10 years ago.
David 23:03
So we opened up to new possibilities. And we also sometimes grow in spiritual ways. You know, I know that I’m much more value-driven now. I think it’s the greater good, I think of myself in the bigger picture. You know, my sense of spirituality is thinking of growing the way and shrinking the eye. And, you know, for some people, you know, religion and Orthodox religion is really important.
David 23:33
But you can have other forms of spirituality, which help guide you. One of the stories I’ve got in my book is of the senior chaplain of the New South Wales Ambulance Service. And I got to know him and tell his story. He went through major trauma and became a minister of religion and then wanted to help paramedics.
David 23:56
I wanted to interview him because he said, You know when chaplain turns up to the scene of horrific accident or suicide or death of a child or something like that. What can you offer people at that moment? And really, it boils down to human presence, just bringing your human presence. And you don’t have to say anything wise, you don’t have to say anything smart.
David 24:21
And often what we do is we hold back because we’re afraid of saying or doing the wrong thing. But you know, as I show in, when I tell that story, and he gives a few examples of, of incidents that he came across, you just have to turn up and you just sometimes just need to sit with a person and it could be in silence.
David 24:43
And then you know, after time, you know, you can have a bit more input when you’re helping somebody go through a major crisis. So there’s about five or six ways that this is in this area of post-traumatic growth research that I discovered which typically people can grow in might be just one thing, or it might be the whole lot.
David 25:06
And what I’d also like to add is that you can grow in these ways, but there still can be difficulties in your life. It’s not like magically, everything is really hunky-dory. Like you can still have some aspects of trauma, you can still experience periods of distress or despondency. Or, like you said, and like I experience we get frustrations because we’d like to do more than we can.
David 25:31
So it’s like we walk alongside those things, rather than them being like a wall in front of us. We can still grow, and we might still have this difficulty that’s alongside us, you know, like the weightlifter you were describing earlier. She still got one side that’s partially mobile, but she works with what she’s got. Rather than thinking I can’t do anything because of this, you know, physically mobility that I’ve got
Bill 26:00
Yeah, it’s fair if she thought that as well, it would have been fair. Yeah. Except she just decided that she’s not gonna allow that to get in a way. And she also needs amazing things. And she’s worked out a way to create some kind of a process that allows her to still knit even though one of her hands can’t really do the job of holding a knitting needle correctly.
The Power of Suffering

Bill 26:22
So she finds new unique ways to overcome challenges that a lot of people have and it and she brags about the stuff that she does, which is really cool, because she’s not bragging about it from the point of view of I knitted this with my one arm that works well. She just brags about the fact that she made a hat that’s out of wool, or whatever it was. So it’s pretty amazing now. That’s the book The Power of Suffering.
David 26:57
Growing Through Life Crises.
Bill 26:59
I love your book covers, there’s a lot of thought that goes into them. The last book cover was that one there, which shows the ancient Japanese art of repairing things with gold. Because often, the way the Japanese see it is, is that when something is broken, and you repair it and you make it a pretty repair, it makes it even better than it was before. And that is the experience that I had with my brain. And tell me a little bit about this book cover because it’s got what looks like a maze on it.
David 27:33
Yes. So if you can just take your finger away from the bottom there Bill, you’ll see that that plant has been pulled out of the ground. And so that’s the experience you know, when we get hit by a major crisis or life upheaval, it feels like we’ve been, you know, taken our roots have been taken out of the ground where we were.
David 27:55
And then you know, this is maze of trying to get through life which you know, we’ve never had any training for these things that happen to us. And sometimes people around us or often, They don’t know what to do either. So there’s this maze that we go through. And once we get through the maze, we start to blossom in new ways.
David 28:17
So that’s the idea of the book cover. The cover designer came up with that, once knowing the message with the book, and I think it’s a great illustration of the main theme of the book, which is, there is the survival, which is really, really hard. Then there’s the recovery period where you start to make sense of things. You develop new routines and new ways of supporting yourself and those around you get used to that as well. And then you start to blossom in some new ways that you never expected.
Bill 28:49
You talk about post-traumatic growth, intimately right now, as a psychologist in your working life in the past. Were you aware of that concept? And were you able to have those types of conversations with people that came to see you for support?
David 29:06
No, I wasn’t Bill. And I think this is what’s so exciting about this relatively new field, as a research field, you know, if we look at the major religions have all talked about suffering as a means of growing or developing wisdom, or a form of redemption. So this idea is actually as old as the hills. As far as we know, humans have been experiencing this in some way, forever.
David 29:36
But certainly, you know, in documented history, there’s plenty of examples of that. But now we’ve got a title. And we’ve got a research field like a scientific papers and so on, so we can actually say it really exists. So but when I was working as a clinical and forensic psychologist, we just saw Post Traumatic Stress Disorder as a bad thing. And the idea was you had to get back to the try and get back to the level you were at before.
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? Doctors will explain things but 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. 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.
David 31:07
One of the founders of this research field is Professor Richard Tedeschi is a psychologist in North Carolina, or North Charlotte, in the US. And he uses a really good example. He says, you know, if a city has been hit by an earthquake, and buildings are broken and infrastructure is destroyed, but people still need to live, they need still need to exist.
David 31:35
And if this city is in an area where earthquakes have happened or could happen, it doesn’t make any sense once you know it can happen to rebuild the city exactly the way it was before. Like try and create the buildings the way before the infrastructure the way they were before you actually now know that you have to build it in a new way so It becomes resilient to future shocks.
David 32:03
And this is the idea of growth where growth is transformation. It’s not bouncing back to how things were exactly before, but growing in a new direction. And I think this is going to be the big lesson coming out of the pandemic, is, you know, we use this expression new normal, is we’re not going to go back to how things were, we’re going to transform in some ways, and some of those transformations are going to be really good.
David 32:32
But unfortunately, we have to go through the struggle first. Because the struggle opens us up, you know, creates vulnerability. We realize how uncertain life is. Unfortunately, the way it works is we have to experience the emotional pain to try you know, be motivated to find new ways of being. And one of the things we need to understand is that life is inherently uncertain. There’s an element of fragility to it. We can control everything that happens to us.
Bill 33:03
The Buddha talks about suffering as being as having a large component of ignorance associated to it. So my ignorance of not understanding how I can ride a bike or not seeking out how to learn how to ride a bike again, allows me to suffer the feelings of never being able to ride a bike again. So, putting away becoming curious about what might come, what I might be able to achieve with regards to getting back to riding a bike will allow me to have some successes in that area and therefore I am less ignorant and therefore my suffering will decrease.
Bill 33:50
That’s the way at least that I took that story from the buddha and I brought it into my life so that when I hadn’t ridden my bike for four years after the stroke, because every time I got on, I couldn’t feel my left side, I would fall over and injure myself and hurt myself. I found new ways to try and overcome that. And one of the ways was to get a potentially a bike that had two wheels in the back, so that balance wasn’t an issue.
Bill 34:21
But what I found was that my left leg, when I was pedaling, would get really tense and tight and fatigued. And as a result, it would be very difficult to get home so I might get to my destination, but getting home would be really painful. So that wasn’t working. And then of course, electric bikes were invented. And the battery operated pedaling system allowed my left leg not to get fatigue and also to have a greater amount of support on the way home.
Bill 34:52
And that made me getting back on a bike without two wheels in the back just two wheels possible again, and after about five years I overcome the challenge of how do I get back on the bike. Now, if that didn’t work, I might have got a bike that takes me on shorter trips, or a bike that I have to lie down in. What I’m trying to get at is that initially, I avoided the whole thing for about four years, and I suffered the entire time, little bits of suffering.
Bill 35:22
But every time I saw somebody riding a bike, and I remembered that I couldn’t do it, it caused a little bit of tension, a little bit of anxiety. So then I’ve overcome that ignorance in how I could do something was what was getting in the way. I overcame that by learning and becoming curious about how to move on and continue the passion or continue that thing that I used to do from my childhood.
Bill 35:55
Regardless of what all was experienced on my left side, you know, and that and Kelly, the weightlifter is the epitome of that as well. She reminds me of that kind of way of overcoming. It’s just about getting curious. There is I felt there was more pain before the overcoming of that problem, it’s better after you overcome that problem or find a solution to that problem. How do you talk about that to people, which is that they’re scared that they might not find the answer, therefore, that will be painful. But there’s sort of existing in a world of pain because they’re afraid.
David 36:36
Yeah, it’s great, great question, Bill. And I really wanted to address that in this book, you know how people can stay stuck in their suffering and not move on. But first of all, I just want to touch on the difference between pain and suffering. So we know that physical pain, we’ve got pain receptors in our body is necessary for survival.
Physical and emotional pain according to David Roland

David 36:56
Because we step on something sharp and it cuts us we need that pain sensation go to our brain say you’ve stepped on something, you’ve got a cut, you need to fix it. And it’s the same with emotional pain. You know, we’re designed to have grief. Because we can only have grief when we love somebody or we connected to somebody, or we love our job when we lose our job.
David 37:19
That’s part of how we’re made. So we need to accept that there’s a level of pain which is going to come from loss or hurt, you know, like being heartbroken is a very physical experience as much as an emotional one. So this pain is quite normal and you know, it can take some time for that pain to ease up. If we’ve lost a loved one. It may be that we never completely lose the grief. But we can move on and develop maybe new connections.
David 37:52
So the second thing is acceptance. So when you had the left-sided, paralysis or immobility or loss of strength, you got stuck in your suffering because well, I can’t ride and you stay stuck in your suffering around that. And riding for I think you said four years. So we need to accept, this is how it is now. So if I’ve got left-sided weakness, I’ve got to say, okay, it’s been around for a while.
David 38:23
So this is how it is now, what can I do, given that I’ve got left-sided weakness, and in your case, you really wanted to get back to cycling. So you found ways of doing that and that eased your suffering. It hasn’t necessarily fixed up your left side of weakness, although I mentioned that strengthen, but we ease our suffering through acceptance and then saying, okay, that’s how it is now, what can I do with that?
David 38:51
And it could mean you find a new way of doing the sort of things you did before like you with your bike riding, or Kelly with the weight lifting or in my case, you know, I found something completely new, which was dancing. So, and I was able to get back to ocean swimming after a while as well, because in my case, I had trouble with my balance.
David 39:13
So lifting my head up and down in waves actually made me incredibly dizzy. So we can find new ways, or we can find adaptations. And that’s how we start to release our suffering. So we might have the limitation which is real. We’ve got to accept that and say, okay, this is what it looks like, this is what it feels like. This is what it sounds like. What can I do now?
Bill 39:39
Yeah, that really strikes a chord. That’s amazing. It’s exactly what you said. It’s that adapting that makes sense now, but it’s the first time that somebody has said that to me that it’s about how you adapt. It’s not only about how you evolve and how you grow, but it how you adapt and allow yourself to adapt and also experience joy in doing things that you haven’t potentially done before, that you didn’t think could be joyful.
Bill 40:09
And I found a lot of those things. And I do a lot of those things. And one of them is podcasting. And that’s a classic example of me diverting my energy because I’m a very highly energetic person diverting it into something else. That also creates this, where it’s more about, like you said, it’s about we rather than just me, and it’s about how do I create this podcast that’s going to make a difference to all stroke survivors.
Bill 40:39
And then what came of it was, you can also make a difference to people that release a book about recovery, that I can interview and then that will help other stroke survivors as well as me and then this thing just grew out of nowhere and it came to me in the most bizarre place you know, came to me in the hospital going from surgery to a month-long stint in rehabilitation so I can learn how to walk again. So, I’m not sure how it came to me while I was sitting in that place called the transit lounge. But it did and it never ever went away. And I didn’t know how to do a podcast. What it was how you get it online? I had no idea. I just knew that that’s something that was going to happen.
David 41:25
You’ve said two great things there. Bill. If I could just comment on that. The first one is, you’re a bit crazy for doing Podcast I mean, you got in before everybody started to do podcasts, so good on you. But now you’ve open to new possibilities. And exactly that point. We don’t know what that new possibility is going to be. Why on earth did it come to you this idea of doing podcasts and when you’re in the transit lounge, I don’t know. You don’t need to know either. So that’s the first thing.
David 41:59
The second thing Is that, what was the second thing? I still got some of that memory issue. I forgot what I was gonna say now, I got so excited about you deciding to do podcasts, oh the second thing. The second thing, another way in which people often grow is and it actually helps them move through this suffering. So it’s both a strategy and also an outcome is to offer personal service as some form of personal service.
David 42:35
And you know, all the stories that are in my new book, every one of them and I didn’t know that we’re going to do this now offer personal service because of what they’ve been through. So one of the stories is Steve Gallic, who was in a motor vehicle accident where his wife and one young son died. And his second young son Steve was in about 28 when It happened.
David 43:01
His second young son had a very severe brain injury was in a coma. So Steve became his son, Peter’s carer. And Steve himself got a fractured neck. So he wasn’t well either. But now he rehabilitates native wild animals who are injured. And he’s a professor of economics. And he is working his way up through the federal government service.
David 43:26
And he was like one of the hard men. He had no idea he was gonna go out and rescue animals. and to see him feeding baby Joey’s with a bottle, which I got to do. And I got some video that just really, really moving. And he says animals have given me so much. He said he didn’t have a lot of support after his accident. And he said, I want to support animals in ways that I wasn’t supported and I get more from them caring from them and that feels like a gift to them.
Bill 44:02
Wow, that is just amazing. I said exactly the same thing. That’s partly why the podcast exists because I wanted to bridge those gaps for people who didn’t have the information that I needed. You know, in 2012. In 2012, there was no information about how you can support yourself. It was sort of starting to emerge. And there was new areas of research about neuroplasticity, and all that type of thing was happening. But there wasn’t a lot of information out there about it.
Bill 44:28
And I just struggled with not knowing and not being able to find unique solutions to really challenging problems. And I thought, if I put it together in a podcast, and I bring enough stroke survivors on and they share all their one unique thing, but there’s going to be a massive database of unique ways to overcome really complex problems by the experts, the people who have done it themselves and have been through it themselves. It’s so fascinating to hear, that he experienced that same emotional recovery that I did. And he did it with rehabilitating animals that is just fascinating.
David 45:15
Yeah, yeah. And, you know, he just it just happened that he remarried and they were driving along a country road. They live outside of Cambria in the countryside. And they thought they’d run over an Echidna. Because it seem to be struggling on the side of the road. Turns out they hadn’t. But then they picked up the Echidna and took it along to you know, a place to be rehabilitated.
David 45:41
And it just started from there, that you know, they’re on a country property and his wife is a GP so she’s got those medical skills. And they’ve just developed an amazing rehabilitation facility for native animals mainly kangaroos, wallabies, wombats. And now does research into koalas and stress in koalas. And during the recent, like summer bushfires, they were getting inundated with, you know, burnt animals, and they were featured on the news and all that sort of stuff.
David 46:15
And they got a lot of donations. So you know, there’s remarkable stories like that, where you just don’t know what this new thing is going to be. But often, it’s a sense of mission, or a sense of personal service. And I want to emphasize that, offering your help to others, even when you’re feeling fragile, or uncertain, actually lifts you so it’s altruistic, but at the same time you benefit from it.
Bill 46:46
Yeah, that’s what I’ve found. The podcast has given me way more than I feel like I have given to the podcast and each episode takes about three or four hours to get done, and costs money and does a whole bunch of different things. So even then the investment seems to be just absolutely worth every single time and moment and dollar that it costs to get to that point. After doing it since 2015, I’ve got better at it. And as a result, it’s more efficient. And therefore, the podcasts get out a lot easier, but they still take a little bit of time, and I’m very comfortable with that. It’s all good. Now in your book, you’ve got about what is it about seven or eight stories?
David 47:30
No it’s 10 or 11 stories, 11 if you include myself, yeah, I put some of my anecdotes in them new anecdotes that weren’t in the old book. But each chapter has got a story. You know, a different story. So I take you through these different stories. So you enter these people’s lives. You sit there with them and me, and we hear their story, we hear how they survive, we hear how they’ve grown.
David 47:59
And there’s a huge range of stories. I mean, one of the ones I like was the African refugees that I interviewed and sat with in their living room into lumbering Queensland. And they came out as refugees from Chad in Africa. Another one is in Roberts, the Rugby League Football, who is an amazing individual in so many ways.
David 48:23
I wanted to spend time with him because I wanted to know what it’s like when you hold a secret, a deep secret and you’re afraid to let that secret out. And in his case, if listeners don’t know. He was like one of Australia’s best rugby league football, has represented Australia. And he was homosexual in the days when, you know if you came out as homosexual, especially in sports, you would be vilified.
David 48:55
He got death threats and all sorts of things. So he eventually came out with that secret and you know, suffered some negativity, but actually mostly positivity, that he also had another secret that I wasn’t expecting. And that was illiteracy was illiterate. So it wasn’t until he would go to his 30s that, you know, and his football career was over and he was running a sportswear business.
David 49:23
He happened to be walking past NIDA, which is the National Institute of Dramatic Arts in Sydney. And he always had this idea that he liked acting. And he just went in there and said, you know, like, I know I’m a bit all but you know, do you think I could do some acting classes, and one of the main teachers came out and spoke to him and said, well, let’s see. You come and do a private class with me, you know, one hour a week, and after a six weeks or something, we’ll decide, and he ended up getting into NIDA and then developed an acting career in Hollywood. So there you go.
Bill 50:04
Wow. Isn’t it amazing? So in your mind, what’s the problem with holding a secret that nobody knows about, that’s yours for life? What’s the problem? What does it do?
Why secrets can cause health issues

David 50:19
There are two things we might as well use as an example. He actually always felt, you know, comfortable with being homosexual. He didn’t, himself feel anything wrong with that. So, you know, there’s lots of people that have got something that they see could be wrong with him. And they try and keep it secret or try and keep it hidden. So he’s homosexuality, for him wasn’t a problem, or is a problem for a lot of other people.
David 50:46
You know, like when he would go on tour. You know, he had to share a room with another teammate. And it had to be a teammate that was you know, comfortable with being with Ian and there always was one because he’s a hell of a nice guy. And but the second secret was the one about his illiteracy. Now he experienced shame because of that.
David 51:12
Now, this is where secrets are really bad for our health, our physical health, because it decreases our immunity, our immune system. And it’s also bad for our mental health because shame makes us feel bad. It makes us feel less of a person. It makes us feel like we can’t fully fit in. And it makes us feel like we can’t be our authentic selves.
David 51:36
You know, you and I know, Bill that when we’re with other stroke survivors, it’s really easy just to be ourselves and to laugh about, you know, the challenges that we have and the mishaps and so on. So, what would it be like if you or I had these strokes and we could never actually talk to people about it. We had to hold all those difficulties or uncertainties we had because of our stroke to ourselves.
David 52:04
So that’s, that’s why secrets are bad. Now Ian says now that he should have spoken out, told somebody about his literacy much earlier. But it was when he went to acting school, that he learned how to sound words, because the teacher said, Oh, you’ve got to be able to read to do an acting course. And they showed him about you know, phonemes how, how, you know, words are made up of sounds, he never knew that. And I tell the story, in the book about why that was why he missed out on all of that.
Bill 52:35
Yeah, that is just fascinating. I have started reading the book and it is gripping it really is because you do such an amazing job at setting the scene and then making me want to know more. So for anyone that’s interested, check it out, just google The Power of Suffering by David Roland, and you’ll get a whole bunch of opportunities to go and buy it from somewhere and find it somewhere.
Bill 53:00
Especially from online.
David 53:02
It’s also an audiobook Bill. And it’s read by Lewis Fitzgerald, who’s an actor, so he does all the voices so amazingly well, like these times I listened to it, it feels like it’s somebody else, his story, and it just sends shivers up my spine. Sometimes he does such a lovely job.
Bill 53:22
That’s a relief because David, I can’t read books really well. So that’s a big relief. And I really enjoy listening to audiobooks, especially when I’m in the car driving. So that’s cool. Now, I just wanted to touch on a couple of things before we sort of start to wrap up and tell me if you can give me your insight or your thought into the process of post-traumatic growth and the power of suffering because I have this experience that I’ve voiced a couple of times and it’s that stroke is the best thing that ever happened to me.
Bill 54:01
And that comment can really upset people. Some people will listen to those who are going through stroke or had a stroke or have deficits because of stroke, whether they’re one year, five years, 10 years, it doesn’t matter. And they will completely push away from that comment, and they’ll want to have nothing to do with it. I put it out there, and found that there was a lot of other people that say that, and I interviewed them.
Bill 54:26
They’re not interviews that are available on the podcast, they’re interviews that were done offline. And there are some similarities and a pattern to how people get to the point of being able to say, stroke was one of the best things that ever happened to them. And of course, it reminds me of the power of suffering. So do you find that telling people that it’s okay to suffer can polarize an audience and why? Why does it do that?
David 54:58
Well, I think
David 55:02
I think you’ve touched on some great things there. Walter Mikac who launched the book for me, at our local bookstore just before COVID shut down, because all my public events got canceled after that, but he said, How brave is David Roland to write about the very thing that most people do not want to experience.
Bill 55:26
Now let’s talk about who Walter Mikac is because coming from him. That’s a big comment.
David 55:33
Yeah, so Walter was a young man with a wife and two girls. And when we had our last major gun massacre in Australia, which was at Port Arthur in Tasmania, both his wife and two children was shot dead. And so Walter wasn’t actually at the site when it happened. He was near by playing golf. So he came to find his loved ones dead.
David 56:02
Now, Walter. The next day, he went back to Melbourne. The next day he wrote to the Prime Minister of Australia. Just thought, I’ve got to write this letter. It’s really bugging me on his flight back to Melbourne. And the Prime Minister of Australia that time was John Howard, and said, we’ve got to do something about guns.
David 56:25
We’ve got to stop this happening again. And the Prime Minister rang him the very next day after receiving a letter and said, I agree with you. So Walter then became one of the faces of increasing changing the gun laws in Australia so that we would be far less likely to have the gun massacre like that. And he now says, you know, hundreds of thousands of lives are probably been saved because of that changing gun laws.
David 56:56
So Walter knows suffering. So I think You know, it seems so counterintuitive. And when people going through intense suffering, I don’t think they want to, or they can’t comprehend the message that there could be good outcomes from this. In that early stage, we just really have to keep them safe. We need to provide their basic needs, you know, like you were saying, we need to provide information, there wasn’t information, you know, do practical things that were going to help the person stay as well as they can be.
David 57:31
And then after, that is when we can start talking about, okay, you might want to open up to new possibilities. Or you might gain some wisdom that you didn’t have before. At that same book launch, where Walter launch the book, there was another man who’s just a few years younger than me, and he had a brain tumor and survived. And he said, David, you’re just telling my story.
David 57:58
He said, I now feel like I’m in new person, I don’t feel like I’m the person I was before is this I am so grateful I had that brain tumor and survive, you know, and his wife has had to adjust to the new him. You know, everybody’s had to adjust to this idea that this man is really pleased he had a brain tumor. He’s actually a painter. He’s a very, very good painter.
Bill 58:25
It’s just fascinating. It’s such a lovely thing. It’s such a great topic. I love the fact that you’re a psychologist. I love the fact that you’ve chosen to bring this type of knowledge from your background, and with your stroke experience into the world so that other stroke survivors can benefit from knowing these things. And it just to me, it’s made a massive difference knowing that you exist in that way. And I reckon you would have been an awesome guide beforehand because it seems like you took your work personally and that affected you personally.
Bill 59:03
And now you’ve found a way to harness your previous skills in this new direction. And you’ve taken your life’s work and you’ve just transformed that into this other place and making a massive difference. So, thanks for that, and well done for doing that. Tell me how has this experience made you less likely to be traumatized in the future because you spoke about in the past, you’ve spoken about being traumatized by all the years of listening to traumatic experiences that other people have gone through. So how have you been able to override this because I imagine that every time somebody buys your book or you sign a copy, somebody shares a traumatic story with you again,
David 1:00:01
I think the thing to say is that I’m much less afraid of suffering, much less afraid of traumatic experiences, other people’s experiences. So if somebody’s been through something terrible, I don’t feel afraid of their distress, like I might have before, you know, before I had a professional ear, but now I think I just bring just a greater sense of humanity to other people’s suffering or their distress.
David 1:00:31
And one of the reasons why it’s easier is that I know I survived. And I can see that they can survive, and that they can even grow from it. Even if they can’t see that there’s the possibility of growth at the time. And I think when we bring that type of presence to other people, they feel it doesn’t have to be spoken. It’s not like we need to say, Are you going to grow from this? Don’t worry.
David 1:00:56
No, we just say, you know what do you need? you know, there’s a certain presence that we bring when we’re a survivor of intense suffering. And we don’t need to fix it for them that’s really important, they can be going through distress, there may be nothing to be fixed there and then, and we don’t need to try and fix it. Sometimes we just got to ease off and say, yep, you’re really distressed. I get that.
Bill 1:01:25
I learned to be a coach. Somebody who helps people achieve stuff basically is what a coach is, and they can help them achieve lots of different things before stroke. It didn’t matter what they came to me with. It was about creating space to allow that person to explore how are they going to achieve the thing that they wanted to achieve, or stop doing something that wasn’t serving them or learn new skills or change their job or whatever it was.
Bill 1:01:52
And I remember early on in my coaching career, I used to try and solve their problem for them by giving people advice, do this or just do that. And maybe if you do this, you’ll fix your problem. But of course, that was my filter on how problems get solved. And at the beginning when they never achieved the outcome, I would get frustrated thinking that I wasn’t doing anything.
David Roland’s professional mindset before the stroke
Bill 1:02:18
And it was really difficult to be a coach of that nature. Because most people won’t achieve an outcome in one session or in three sessions or in five sessions. Sometimes it can take a lot longer, and there’s a lot more things to overcome. Is that something that you used to maybe do knowingly or unknowingly? With regards to when you were early on in your career? were you hoping that you were going to solve people’s problems as a psychologist?
David 1:02:49
Yes. And you know, as a mental health professional, that’s what you’re trying to do is to fix people’s problems. Only we accept that people are not going to change unless they want to change You know, that’s that’s the first step. But you know, given that they come to see you for some difficulty, we think, Okay, I need to sort this out, I need to get them, you know, well get the maintenance done and get their engine fixed up.
David 1:03:14
And you know, they can go back to how they’d like to be. And as he say, it’s not always as easy as that. And in fact, we’re not always the right person for that person either. So yeah, we can create a lot of suffering for ourselves by having this high expectation. And now I don’t have that expectation. And I think, you know, I talked about the book in the book about being an expert companion.
David 1:03:40
So it’s more about being a companion to someone and the expertness is about when not so much offering advice, but asking good questions. You know, like, what do you need or, you know, how’s what’s happening now for you, affecting you? So they need to discover the answers. And there’s a sense of timing in that too, you know, when you ask questions, and sometimes you can make an observation, you know, we always need somebody that we trust, to make observations.
David 1:04:12
There’s a couple of friends when I was going through my stroke recovery, they’d say, gee, you’re looking good today. And I knew they really meant it. And I knew if I said that it was real I thought oh good I’m making some progress. So it’s making observations, asking good questions, and sometimes offering new perspectives. Yeah, so you can’t do what you used to do. Okay. There’s some other things that we might be able to do. Just posing that idea that there could be other things that you could do.
Bill 1:04:46
I remember early on, when I was probably 24, 25. I was seeing a counselor, psychologist, she’s an amazing lady from Melbourne. And one of my things that I used to cause a lot of suffering in my own life, about was how everybody else was an idiot, stupid, rubbed me up the wrong way caused me drama has caused me problems. And after seeing this lady for I imagined a number of years, and I still see her. So it’s been a 20 year relationship. And I don’t go for the same reasons. But of course, it still really helps me to go because she’s amazing. And she asked me this most amazing little question, and it changed my life. And she said to me, is there any chance that it’s not them, and it’s a you?
David 1:05:37
I never thought of that.
Bill 1:05:38
I had never thought of that. And I did not want to accept that at the very first moment when she said it. I swore at her, and I pretty much walked out. And then when I went back a couple of weeks later, I had come to terms with the fact that that was one of the most biggest gift and biggest blessings that I had ever experienced from somebody in that kind of environment. And I asked myself that question many, many times now, and it has saved me a lot of suffering and a lot of heartache. Though it’s been fascinating, catching up with you and talking to you again. It’s always a pleasure. I’m so glad that you’ve got this second book out. If somebody wanted to get in touch with you or find out more about the book, where can they go?
David 1:06:27
Well, if they just search the name of the book, or my name, and Roland spelled R O L A N D they’ll find lots of online sources, I’ve got a website, which has got quite a few things on it as well in a YouTube channel. So, you know, I’m on most of the social channels. And that’s the best way for people to contact me or through, you know, the publicist or the publisher, you know, which is all that detail is on the website. So just my name, DavidRoland.com.au.
Bill 1:06:58
Awesome. I’ll have all the links for everybody who’s listening so that you can find them really easily.
David 1:07:04
Thanks Bill.
Intro 1:07:06
Discover how to heal your brain after stroke go to recoveryafterstroke.com Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:07:46
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries. circumstances or health objectives do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:08:11
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Intro 1:08:35
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1 hr 10 min
August 02, 2020 Rewiring The Brain – Michael Merzenich
Neuroplasticity and rewiring your brain with Michael Merzenich
Today’s interview is with Dr. Michael Merzenich – If you have had a similar experience with stroke as I have, Rewiring the brain may be just as important to you as it is to me. After I experience 3 brain bleeds between 2012 and 2014. I have left no stone unturned while on the search to recover the deficits that I gain after brain surgery to save my life and stop a faulty blood vessel from bleeding.
You can listen to some of my stories here.

When I woke after Brain surgery in the Royal Melbourne Hospital, complications meant that I could no longer feel my left leg and arm. I studied everything I could find about what I could do to help me in my recovery. That’s when I came across the work of Dr. Michael Merzenich.
Often referred to as the father or Neuroplasticity, in his early career Dr. Michael Merzenich was part of the team that developed the early practical prosthetic device models that later became commercially known as the cochlear implant that helps deaf people hear.
Rewiring the brain offers hope – Michael Merzenich
In the early 1990s Dr. Merzenich set out to find applications of his team’s research findings that the brain was in fact able to change and devised a program to help neurologically struggling children and adults.
Dr. Merzenich is the founder of Brain HQ the brain training application helping people enhance their brain function and
his most recent book is called Soft Wired – How the science of brain plasticity can change your life.
In the interview, I will ask Dr. Merzenich about how Neuroplasticity can be used to support people that are recovering from brain injury and specifically after stroke.
We also discuss the matter of how General Anaesthetic can create premature aging of the brain, particularly for people that have not had a brain injury as well as people with a compromised blood-brain barrier.
Transcript:
Bill: [00:01:30] I actually didn’t realize that you were Lebanese.
DR Merzenich: [00:01:33] Well I’m not Lebanese. I don’t know where I’m from Lebanon Oregon. And that’s a strange way of being Lebanese. Was named Lebanon because there were cedar grove trees down by the river which of course Lebanon is famous for.
DR Merzenich: [00:01:49] But my wife did spend two years at the University at American University in Beirut so I’m sort of Lebanese by adoption.
Bill: [00:01:58] I found it very interesting when I was reading your bio. I thought it was a really funny thing to start the interview with a pinhole people call that thing. Okay so your early research apprenticeship was at the time with one of the world’s strongest auditory groups at the University of Wisconsin Madison. The at hand was to define the fundamental nature of functional organization of the central auditory and since somatto sensory nervous system. Back then what. Why do you feel that this was an important definition to achieve. What were the lead researchers thinking.
DR Merzenich: [00:02:37] Well I was interested in the agents of the higher functions of the brain and at that point the understanding of the basic way that brain systems were organized was so primitive that it was very difficult to understand how to get to the real questions which are the basis of perception the basis of sensation based cognition and so just to understand how the machine was working how the machine how the brain was operating encoding information and translating information into action was was so poorly understood that we knew we needed to have a better grounding and so these studies did lead to a better understanding of how the brain was actually taking in information from the ear from hearing or from the skin from Madison sation and translating it level by level and interpreting it and then basically using it to control its action the production of speech of the production of vocalizations and animals for the control of actions fed back from information from the body. In the case of semantic sensations so we did contribute to making that first level developing first level understanding of how the brain is actually organized to do what it does or very important and you know you can say some of the implications as a result of that work.
Bill: [00:04:02] You know what that led to it is just amazing. It’s really fascinating to me that somebody was thinking about those things and trying to come up with solutions. It seems so obvious there but at the time it would have been groundbreaking right.
DR Merzenich: [00:04:18] It was wide open in the sense that science was very primitively developed. We really had to know how the brain was organized. For example, there was a fundamental misunderstanding about the plasticity of the brain. Historically it was imagined that the brain could change when you were a baby and it grew up and matured reached a mature state when you were maybe a year or two or three years of age and from that point forward it is like a computer on your desk it was hardwired every element was fixed in its function and the really only way it had changed from that point forward was to go downhill because it had grown to a mature state and it turns out that that that was an incredible error. So we now know that the brain and we see one thing that we contributed to the appreciation of the discovery of the brain is in fact continuously changing itself. In fact, it’s big it is continually remodeling itself as a function of how you live your life you engage it. But at that point, our understanding of it was so limited so primitive that we did not understand that.
Bill: [00:05:28] Yeah.
Bill: [00:05:28] Fair enough it’s such a great thing that the brain changes itself and we’ll get to that in a while. It’s just that it’s my big thing but I’m enjoying knowing about my brain. In the 70s and 80s, you led the research team that developed the early practical prosthetic device models that later evolved into a commercial multiple-channel cochlear implant.
DR Merzenich: [00:05:53] Right
Bill: [00:05:53] When you helped to feel some knowledge gaps for the surgeon. Robin Mikkelson in his understanding of the coding of sound and speech in the inner ear or auditory brain and as a result hearing was recovered for deaf people. Were you aware that these achievements at the time were challenging the broadly held conclusion that the brain was hard wired or did that come later.
DR Merzenich: [00:06:21] Well we really did think of it in those terms what we were trying to do and I must say there were two other efforts in parallel. One was in Australia by scientist associated at the University of Melbourne and one was in Austria and in parallel we each develop different strategies to encode speech and our notion was that we could represent speech well enough so that we could have a primitive level of understanding. Mike might expect that if everything worked well but we were really trying to just deliver information into the brain the way the normal ear dead in an accurate enough way so that the individual would understand that information even though we knew that our ability to duplicate what normal intact ear delivers to the brain would was very crude. I liken it to playing Chopan with your fist.
[00:07:19] And in fact people didn’t understand it initially and it took plasticity and the brain basically to make the devices work.
[00:07:27] So they are often thought of as a sort of miracle of engineering but actually they’re a miracle of engineering in the plastic braid and the plasticity and right is absolute critical contributor to the successful application of cochlear implants because they don’t understand usually what that information is at all initially. And the brain changes in a way that confers understanding and so we began to appreciate as we are doing is these experiments the only way we can really account for what was happening in these individuals was if their brain was plastic throughout life on a large scale.
[00:08:08] And we began doing experiments that demonstrated that other than other venues
Bill: [00:08:14] Yeah Fabulous or is it neuroplasticity or neuroplasticity.
DR Merzenich: [00:08:18] Well you can go either way and sometimes we call it plasticity neuroplasticity and well it’s irrelevant
The godfather of neuroplasticity
Bill: [00:08:26] Awesome you’ve been called the father or the Godfather of neuro neuroplasticity for good reason. I wonder who were some of the scientists and researchers that you learned from and based your research on.
Michael Merzenich: [00:08:42] Well actually it’s a little unfair because around you know if we look to the early part of the 20th century it in fact even in the late 19th century the predominant belief was that the brain was in fact changing itself as you acquired ability as you learned. And then we sort of lost sight of it in the mainstream of science.
[00:09:02] But there was always scientist from physiological psychology from the psychology side of science that believe that the brain was plastic it’s just that in the medical mainstream that notion was abandoned because you know you can say when people are doing the most careful experiments they develop this religious idea that the brain was in fact hardwired. And so certainly we helped. You could say make this correction we did a very specific simple experiment that demonstrated the brain was changing itself if you manipulate its inputs in inputs from the scanner impulse from the ear that when you train an animal in any skill and it improves that ability that you account for this improvement by changes in its brain. So you know that led to the understanding that the brain was continuously plastic and we very early did experiments Bill in which we looked at animals near the end of life. Ok this this animal is expected to pass from this mortal coil within a few months or a year. It just as changeable or is it. And we found to our.
[00:10:16] Delightful surprise that it was just as easy to modify its brain almost as easy as in an animal in the prime of life or an early and you just had to make the conditions appropriate for the brain the machinery of the brain because what happens when the brain grows up in early childhood is it matures in its ability to control that change and what it’s doing is it initially it doesn’t have that much control because it still primitive and once it has control you could say it can limit change to the conditions in which the change is going to be good for it but it’s still powerfully plastic throughout life.
Bill: [00:10:57] I love what you said there is you’ve got to make the right conditions to allow for the right type of change to occur.
[00:11:03] Right now no the brain only changes when it matters to it is a simple way to think about it and it changes it very much as a function of how you’re evaluating it and how engaged you are and how intent you are how how how important it is to you because that’s actually controlling the machinery of the brain which is controlling the rate of change and the extent of change.
[00:11:29] So in the case of somebody recovering from deficits after a stroke if it’s not important to them to recover it’s likely that they’re going to have a longer more withdrawn drawn-out rate of recovery.
[00:11:42] And it is one of the biggest problems they have because the brain is damaged and it weakens the information that is fed to areas that are controlling your motivation. So you could say you are commonly demotivated as a function of the injury. And so it’s a special struggle for such an individual they have to make a very special effort and you know we have strategies in which we’re trying to help them increase their motivation.
[00:12:15] But it’s a struggle for them often to just get up for doing what they need to do to get better.
Bill: [00:12:21] So I wonder if somebody had was able to be encouraged via things that they enjoyed doing so something that their heart was in so to speak right their heart being in a process of recovery or a version of their recovery if it was something that their heart was in
Michael Merzenich: [00:12:39] Right
Bill: [00:12:40] That would sort of could that possibly overcome those areas or support those areas of the brain that were damaged on the motivational side.
DR Merzenich: [00:12:49] That’s a really important question. Well, people have discovered in rehabilitation in fact that if you go to things that are important to you maybe things that relate to your former life’s work may be things that relate to your the things in your family or in your extended relationship or friends that are the most important to you or you go to the hobbies that are the most important you most developed that this is a very favorable avenue for you to begin to restore your ability because and your reinforced by all of those other things that we’re contributing all of the richness of that historic experience and bringing power to bear you can say and trying to drive change positively. So yes that is a strategy that can be very helpful and can make a big difference and somebody trying to recover from brain injury.
Bill: [00:13:43] Amazing. I wonder early on how was your research received by your peers early on in your career.
Michael Merzenich: [00:13:50] How was it?
[00:13:51] I didn’t understand your question
Bill: [00:13:53] So the research findings that you were publishing how around neuroplasticity how was that received by your peers? Was it a difficult area to gain recognition in?
Michael Merzenich: [00:14:06] Well initially there was skepticism because the overwhelming belief in neuroscience was that the brain was just not plastic and as it grew up and it was so deeply embedded in fact a Nobel prize had been awarded in the 1970s around this issue that it was regarded as one of the settled issues in science and it was broadly adopted in medicine. So in fact many neurologists today will tell you that plasticity is powerful in a baby and not powerful in an adult and they still misunderstand its powers.
[00:14:45] I might say in their lack of understanding it in fact is harmful.
[00:14:55] Many people could benefit from it but initially, there was dismay I mean you were a challenge at scientific meetings.
[00:15:02] People are very skeptical that quite quickly the evidence came to be overwhelming and in fact, one of the easy experiments that do Bill in the universe of science is to engage a human or an animal in a learning progression in which they acquire a new ability or they improve that ability.
[00:15:24] And if you do that all the appropriate expression of the brain has to change and it is if you do the exam in an appropriate way you will witness that change and the change will account for or relate clearly relate to the improvement of the ability. So it turned out that over a period of five-six seven years, the evidence became overwhelming and now it is pretty universally agreed that the brain in fact is continually changing itself and we understand the processes by which it changes itself in great detail.
Bill: [00:15:57] Yeah, what’s really amazing is that I’ll talk about my experience with a brain hemorrhage as we continue as well was that when I went to rehab the nurses and the physios and all the people that were involved in my recovery. One of the first things they said to me was I, by the way, do you know about this thing called neuroplasticity. And if people didn’t which there were many that didn’t that was the first thing that they told you about
Michael Merzenich: [00:16:26] Yeah yeah, I found that a fascinating approach because it was four years between my first experience with a hemorrhage and surgery. So I had already read up on it and understood about it but I was really great to hear that that’s the approach they were taking when first coming across their new patient.
[00:16:46] Right. No no that’s great. And that is, in general, there’s a general broad understanding that this is in play and this is a path to restoration and recovery now an increasingly intelligent understanding of how to drive change.
[00:17:02] You could say to the benefit of a patient that an individual needs an individual struggling and that’s revolutionizing how we think about rehabilitated medicine.
Bill: [00:17:13] In the early 1990s your research findings began to be applied to help neurologically struggling children and adults. What kind of challenges did you seek to apply neuroplasticity to in the early days?
Michael Merzenich: [00:17:28] Well we looked for a model we know first love we knew that this had broad practical implications for it that they were you know millions of hundreds of millions of people could benefit by the application of science. So we looked for a target. I met a wonderful psychologist who studied the deficits that children have when they struggle at school and she focused on deafness Paula Talau was her name and she’d focused on deficits and language and reading skills and she saw that most children that had that struggle to learn to read had deficits in language and that reading because reading is a translation of listening to the sound part of words that are meaning and works to their representation by letter. She appreciated that the majority of the children that struggled in school had inadequate representation in the listening domain and that needed to be clarified for further translation by letter and reading to make sense.
[00:18:30] So being aware of her work there knowing that the kinds of deficits that she described as applied to these children could certainly be impacted by training. We develop the model training program that took a series of these children’s laboratories that were in New Jersey and trained them and these children are all you know not reading if they were reading it was way below grade level. They all had language impairments we trained them and after training all of them were normal or above normal. And we realized that this would have a very wide practical application of course. So I went to my university I said look we have something that can potentially up many millions hundreds of millions of children in the world.
[00:19:21] So how do we get it to them in the world?
[00:19:24] And they help me contribute to the foundation of the business and that business which is called scientific learning Corporation has now trained quite a few million children in the world who wouldn’t be effective readers in a way that an assured that they were effective readers and basically trained them as listeners and they’re listening accuracy. That was the beginning. So it was always imagined by us to be the beginning because we realized that there were many other applications of the science and that there were many people that struggled for all kinds of reasons with psychiatric illness.
[00:20:02] People that had brain wounded, people were losing it as they got older for all kinds of reasons. By engaging your brain to drive changes in your brain to its benefit, how managing your brain health was possible by using these strategies and so that’s what I’ve been up to ever since I’ve been trying to understand how to translate the science to the benefit of people that struggle and God knows Bill there’s plenty of those, that’s about half the human race.
[00:20:39] Yeah.
Bill: [00:20:40] Look I think it’s amazing that specifically, the approach that you took was where you came from understanding that the brain is physically changing, and as a result of that it will adapt and allow for these new structures to occur and therefore anything that we need to enhance or.
[00:21:00] or create for somebody or help somebody create in their own brain is possible.
Bill: [00:21:05] So I think that was like a novel way to approach a problem like somebody can’t read in the past people like that were just given the pop them on the shelf kind of treatment. They’re never going to learn they’re always going to be that way. So it’s amazing that this approach of neuroplasticity got to that result. How did you track the progress? Obviously they went from not being able to read to being able to read etc. and communicate properly, but in the brain did you guys have access to FMRI at that time in the early 90s that could show the changes.
Recording the brain and how it operates – Michael Merzenich
Michael Merzenich: [00:21:45] Yes did Bill.
[00:21:47] We recorded from brains in a number of ways and FMRI and using evoked response strategies and using positron emission tomography where you’re looking with radioactive tracers of activity and we could see the brain physically and functionally changing as we train it.
[00:22:05] So this is, you know, we now know in a rich scientific basis that when you engage a brain and train it first of all you can define a assigned brain of someone struggling for whatever reason you can record their weaknesses their limitations in both behavioral terms and in terms of the physical and functional brain.
[00:22:27] They can document the specific bases of their problems and then that defines a plan of attack for helping them for guiding them to be better and stronger again to move in a normal direction. And unlike medicine that’s dependent upon gross for example chemical manipulation or shocking the brain in some way which is a sort of high standard of current neurological medicine we don’t have very crude strategies they’re based upon the principle that you’re going to do something that distorts the brain in some way that will help you on the path to recovery and that’s crude in relation to identifying the faults and using this great natural asset the plasticity of the brain to drive the brain back in a normal direction. You can see if there’s ever a true cure for any logic or psychiatric condition. That will come from engaging your brain to naturally drive it in the correct direction.
[00:23:42] So it’s not that this is easy to do. You might have to train a lot and maybe you can’t get the role to play in practical terms in every person. Certainly not when the brain is damaged but you can make large-scale differences in the corrective direction and almost every individual that’s struggling and this is what we’re trying to do inpatient cohort after patient cohort
Bill: [00:24:09] It’s really amazing stuff I was in the hospital recovering from my brain surgery as a result of it when I woke.
[00:24:20] My left side was numb. I had motor neurons on sincere and urine challenges. I had to learn to walk again and reuse and learn how to use my left arm again and in the time that I was waiting for the different rehab exercises to occur and to be called down to rehab I was watching videos of you delivering your speeches and I was watching Paul Bach-y-Rita and I was watching a whole bunch of other people. And it occurred to me that if I meditate and imagine myself
[00:24:58] Walking and using my arm again will begin the process and it will be then not unfamiliar. When I get down to the floor and the walking
Michael Merzenich: [00:25:08] Right right.
Bill: [00:25:09] How does meditation and imagining oneself walking actually change the brain? Does it actually change the brain?
Michael Merzenich: [00:25:16] Well it was a wonderful insight that you had Bill because actually the machinery involved is engaged by mental practice is no different from the machinery that she is involved in physical practice. It’s exactly the same machinery. I mean it just doesn’t lead in the end stage. In other words, if I practice I’m actually driving changes in my brain just as I practice them and when I’m in action people can imagine playing the piano and imagine playing a piano piece without ever moving their fingers. And then when they get down and put their hands on the piano keys they’re advanced because they have all of the benefits of that mental practice, people can watch somebody juggling balls in front of them and watching them juggling balls in front of them, of course, advances them substantially and actually picking up the balls and juggling. In fact, you get at least as much advantage in managing it as you do and actually playing, actually juggling.
[00:26:26] So so people think that mental practice has the power of physical practice but it does of course I mean you’re sitting there you’re working on the solution of a problem you’re exercising your brain in a very systematic and simple way, of course, your driving changes in the brain and just in the same way you’re advancing it as if you’re engaged in any physical activity.
Bill: [00:26:54] Wow. So it’s a great tool because it means it doesn’t cost anything. It means you don’t have to go anywhere to do it
Michael Merzenich: [00:27:01] Exactly.
Bill: [00:27:01] All you have to go into your own mind and if you have somebody facilitate that in a guided meditation for example it’s even easier you can get one of those off YouTube for free.
Michael Merzenich: [00:27:11] You know actually one of the sorts of shocking things about brain training in whatever form is that it’s almost free so it’s because it’s supported by technology and you can sit in front of a computer in front of an iPad or a phone and you can and you can exercise your brain and brain HQ which is one of the programs that we apply widely in clinical populations. It’s so inexpensive that people don’t take it seriously. They say well you know you’re telling me that I can have this intensive training that could fix this for 30 bucks. you know so come on! if we said well this is 5000 dollar treatment we’d probably convince them that it’s really worth their time. But the fact is that it cost almost nothing to deliver it and it’s inexpensive to make and cheap to deliver.
[00:28:04] You could say so that’s another thing that ultimately this will enable the delivery to everyone in the world. You could say there needs help and this is not that this is everything persona has to and this is part often a part of the solution.
Bill: [00:28:20] Yeah with brain HQ I played those games early on as well and the great thing about that is that it’s able to calculate where I’m at and it shows me how far I’ve come and given me some information that you can’t get
Michael Merzenich: [00:28:37] Yeah
Bill: [00:28:38] Which I found was very helpful because I forgot to ask my family my loved ones to pay attention to how far I’d come in my process and I often wasn’t noticing that I had regained you know fine motor changes in the ability of how I grabbed the fork etc.. So having somebody be able to remind me even if it wasn’t my relatives was great because then I felt good about myself I’d achieved something. I’ve come a long way.
Michael Merzenich: [00:29:07] Well one of the hardest things is the calibrate yourself and it helps you calibrate yourself. I mean you really want to know how you doing when you start and you want to know how things are progressing. And sometimes it’s not totally positive. I mean everyone reaches limits in whatever they do. But it’s honest. It’s an honest calibration and how you doing. And that’s a critical part of getting the most out of your brain.
Michael Merzenich: [00:29:36] Yeah many people talk about neuroplasticity in a positive light but there’s a negative side of neuroplasticity as well. Can we talk about negative neuroplasticity if a little bit about what you’re saying?
Michael Merzenich: [00:29:47] Well first of all plasticity is bi-directional so it’s a little bit of a complex thing to talk about but you commonly do things in life that are self-destructive from a neurological point of view. An example is as many people as they get older develop very stereotypical behaviors and actually plasticity in sustaining the richness in their performance abilities requires that you perform with significant variety and how you do things. So the more stereotyped you are the more you sort of burn in. A simple way to do things that is not healthy for you neurologically an example of this is let’s say I’m the person and I fall and I realize that I’m sort of in danger of falling. So I adjust the way I walk I’m going to walk more carefully maybe I’m going to look down at my feet more often.
[00:30:43] And so and so you’re adopting a shuffling step that’s more stereotyped and you’re commonly looking down because you’re worried about hazards in front of you. Well, you’re stereotyping you’re walking when you’re older is exactly the wrong thing to do because it’s that surprise that bump you know that little bit of the event that’s unexpected that you need to adjust your posture too. Looking down at the ground means that you’re going to see things and near vision and if you are bumped things are going to race in front of your eyes and it’s going to carry it right to the ground.
[00:31:26] People do all kinds of things and then you know you might, your walking with your knees bent a little bit, walking is more exhausting you’re doing all kinds of things that are sure that within a period of a year or two or three, you will not walk anymore. And people do all kinds of things like this that are self-destructive. Another important aspect of this Bill is that we’ve studied the characteristics of the brain its physical functional chemical characteristics near the end of life and we’ve contrasted those look at about 35 things that we contrasted with the brain in the prime of life.
[00:32:06] Let’s say you’re 30 versus 85 and you can ask well how many of those things are different then answers are all different well how many of those things advantage the 85-year-old brain? None of them do, on a statistical average younger is better in everything you measure. And then you ask the question well how many of those same 35 or so things can you reverse like training? And the answer is all of them. Everything is reversible. Or to put it another way, the progression to that 85-year-old state was plasticity, you couldn’t call it positive. But I can now say well I’m going to train my brain when I’m 85 and I drive everything in a positive direction. And it’s because these processes are designed by the creator of the universe or Mother Nature to be bi-directional. And we struggle with why it would be designed this way.
[00:33:06] Why are all of these things can we move them in a growing positive direction or do they all slide back into a negative direction I think what it’s all about is that the brain adjusts its machinery as a function of the noisiness of its operations and when it is really refined and really sharp. It’s got very little noise and it’s a function of how you live your life.
[00:33:33] In the early part of life coming up to the prime of life you’re in a learning phase you are continually advancing your abilities and you reach a sort of high-speed high-performance peak and then you sort of rest on your laurels, like you’re spending more time just using the skills and abilities you develop when you’re young and you’re taking it easy quite a bit you’re not engaged very much in learning and learning you’re not really sustaining her abilities very well and it’s a noisiness creeps in everything slows down and slowly deteriorates. So you got to live life with a certain level of energy Bill. I mean you got to, use it, or lose it.
Michael Merzenich: [00:34:18] Yeah. And, so it’s I think what we’re trying to understand now is how can we help people manage this.
[00:34:26] So you know from a young age you’re basically paying attention to. That’s one of the things that I think the calibration on Brain HQ is helpful.
[00:34:35] I tell an older person look, go to Brain HQ and then see how your performance relates to the performance of the average 30 or 40-year-old If it’s substantially deteriorated from their performance get to work and spend a little time and try to get there because 30 or 40-year-olds are very seldom moving directly into the home. They’re not so likely to be demented. So there’s no promise that you’ll be protected from that but you’ll in all likelihood you will be safer and you will be functionally more effective.
[00:35:16] And anyway
Bill: [00:35:19] It’s about moving in the right direction in some way shape or form.
Michael Merzenich: [00:35:22] Exactly. Yeah exactly. That’s a good way to put it moving in the right way. Would you ever choose not to move in the right direction?
Bill: [00:35:29] And then it’s also about changing the stereotype of oh well as you approach your 70s these things start to happen as you approach your 80s these things that happen and so on and it’s just changing that stereotype being different for somebody who is in the eighties.
[00:35:44] We talk about that a lot though. Dr. Merzenich because you know I often hear people say you know now 50 is the new 40 and 60 the new 45.
[00:35:56] So I feel like we’re actually making some progress in changing the stereotype as to what you’re supposed to do when you get to 65 which in Australia is the retirement age. People are going I’m not going to stop working because I get to 65. They’re looking for other things to occupy their time with and I think that’s a really good way to combat you know early-onset dementia or Alzheimer’s or those types of things.
Michael Merzenich: [00:36:22] I agree. I think it is beyond that. Let’s really your brain is really asking you to do is lead a life or continuously new learning. It’s asking you to continue to continuously elaborate your skills and abilities not to go into retreat.
[00:36:38] It’s asking you to be continuously active and lively and not moving onto the path and just taking it easy. You know it’s asking you to remain engaged and interested and with your eyes, wide open and you are you know smiling and enjoying the world in front of you and asking you to basically maintain your connectedness with the world.
Bill: [00:37:01] Yeah fantastic as we get to the end of the interview. When I met you earlier this year at I can change my brain in Melbourne in Australia. I pulled you aside for a moment or two and we spoke about general anesthetic. The reason why I’m interested in the topic of John anesthetic is that I experienced a second surgery about 18 months after my brain injury and after the brain surgery and when I woke from surgery the deficits on my left side the numbness the motor-sensory motor neurons and the sensory neurons. The deficits had increased and the numbness was worse and it was a big challenge to sort of understand what was happening to me and I asked a lot of people a lot of questions including my doctors and nobody could really give me any.
[00:37:58] Of course I need a definitive answer but I came to the understanding from some of the stuff that I studied and researched online that potentially anesthetics can influence the aging of the brain, especially after brain surgery. [00:38:12] Can you give us some insight into how it is that anesthetic causes some challenges in those areas and is there some work being done to help combat that?
Michael Merzenich: [00:38:22] We’ve been extremely interested in this because they’re a rich variety of conditions in which that and some of them in which the brain is injured in surgical procedures or by natural a whole variety of natural disasters or commonly people just go into surgery for whatever reason maybe it’s an operation on their kidney or their heart or their whatever then they go into the ICU after surgery and as a consequence of this their brain takes a big hit they’re very substantially impaired cognitively and in fact, if you go into surgery go into the ICU spend a day or two or three in the ICU and when you’re out of it when you’re hallucinating and when you’re that this is a manifestation of damage to what’s called the blood-brain barrier [00:39:14] it’s a manifestation of the fact that the brain normally keeps the blood compartment sealed off from the brain tissues themselves. [8.5]
[00:39:24] And when the seal is broken there is an increase in excitability of tissues in the brain and that’s what the hallucinations are all about it’s basically the brain beings being stimulating itself in this artificial way then to make a long story short you can both recent studies show that you can both increase the resilience of this barrier. Before the surgery. So there’s an indication that we could have trained you in a certain way before the surgery to increase the strength of this barrier and its resilience before the surgery and reduce the probability of these things happening to you. And also that we can train an individual after the surgery and substantially reduce the effects of the anesthesia and the surgery the trauma that’s occurred that’s reflected in your brain.
[00:40:20] So we’re working hard on both these issues primarily with the research group at Vanderbilt University and in the United States of Tennessee which is a wonderful medical research university and there have been leaders in this area. But we’re trying to sort out how to help people not have this. Well, we think that we can see we’re going which might be achievable. We have completed studies in which we train people that have gone through what you’ve gone through and very rapidly return them to normal not just in their behavioral science but we appear to have restored this barrier separating blood from the brain.
Bill: [00:41:03] Is this a physical barrier or is it something that I can look at and touch or not?
Michael Merzenich: [00:41:08] Well it is physical in the sense that every little blood vessel in your brain has a seal so that nothing can significantly sized.
[00:41:18] And one of the reasons the brain has this wonderful system of keeping the blood out of the brain is that the brain is very subject to infection. And when the barrier is strong no virus no bacteria can enter its own blood. The brain is especially vulnerable to infection when the various leaky then bad elements from blood that can infect the brain can enter the tissues of the brain. And what the brain does is it has a strategy of walling them off it coats them with a chemical that we call amyloid and it creates what’s called an amyloid body which is a forerunner of Alzheimer’s disease.
[00:42:08] So you do not want to go through this process especially when you’re a young guy like you have on credit conditions which this barrier is leaky and they have all these bad things leak into your brain and your brain created to go through this process which is really trying to protect itself.
[00:42:23] Right now you’re stable now so you’re beyond this but a lot of older people are not very stable and or people that are more fragile and you do not want this to happen if it’s avoidable.
Bill: [00:42:38] It reminds me of the conversations that you hear people talking about the blood-gut barrier.
Michael Merzenich: [00:42:44] Yeah right. And how you can get a leaky gut. So are we talking about a leaky brain? It’s a very similar set of effects, a very similar set of effects.
Bill: [00:42:55] Right.
Michael Merzenich: [00:42:55] That’s another really not very good thing to have happen to you.
Bill: [00:42:59] I think I experienced a little bit of that leaky gut scenario.
[00:43:04] Because as I healed my gut I found that my recovery started to accelerate so my head recovery started to accelerate the sharpness of my mind all those things came on board. Now I know that the gut has neurons in it as well. Quite a lot of you are out now are we talking about neuroplasticity happening in the gut? And I understand my heart has neurons as well
Michael Merzenich: [00:43:31] Right.
[00:43:32] The primary, I mean there are changes that can occur in innervation in the gut or the or the brain but they’re also very strong are influences from the autonomic nervous system and it it’s strongly influenced by other areas in the brain that are monitoring their receiving information from the gut and they are monitoring it and in some ways, they’re controlling this sort of end-stage manipulation of the nervous system from the nervous system to the gut. So you don’t think of the brain as being involved in the health of the gut but it is plasticity primarily in the brain.
[00:44:16] It’s receiving information it’s feeding back information. It’s in the other autonomic nervous system receiving information and feeding back information but it’s plastic it can be stronger it can be weak and one of the things that we’ve been actually doing is we’ve done this a lot in animals experiments we are very limited in what we’ve been doing in humans.
[00:44:39] We actually trained the brain in ways that increase the integrity and the level of control of the other autonomic nervous system on the Cardiovascular system and the gut.
[00:44:49] So we’re doing experiments now which are trying to change the biome in the got for the benefit of individuals by changing the brain so it’s they’re all linked together. No one told the brain and the body no one told the brain in the gut that they’re not part of the same machine.
Bill: [00:45:12] I can there is some anecdotal evidence from me at least that you’re on the right track. I love hearing that the research is going down that path because it needs to be a lot more understanding, of the challenge.
[00:45:25] One of the challenges, when I was in the hospital, was the food that we were served food is not normally any good in the hospital anyway but I don’t think it was supportive of the brain healing. For example, we were being served you know sugary high sugary desserts and carbohydrates and you know it was just very challenging to sort of be able to understand how am I going to eat this and it’s going to make me get out of rehab quicker and free up the spot for somebody else that wasn’t doing that so I was getting mum and dad to bring food in for me specifically so that I wouldn’t have to eat it.
Michael Merzenich: [00:46:05] Well I can tell I can but I know from my conversations with you that you’re a man of insight.
Bill: [00:46:12] I wouldn’t have insights if it wasn’t people like you doing the work that give me these insights.
Michael Merzenich: [00:46:17] Yeah but you’re pretty consistently on the right track. It’s good.
Bill: [00:46:23] I’m trying hard it’s all about moving in the right Dr Merzenich
DR Merzenich: [00:46:29] Right it sure is For life, Bill.
[00:46:30] Yeah I agree. When I was researching you for this interview I found a photo of you online with the Dalai Lama.
DR Merzenich: [00:46:40] What do you tell the Lama about? Well, I’ve had the pleasure of being invited to have a conversation with them a couple of times and I find it find it to be astounding. It’s a wonderful experience. I tried and I’ve tried to explain to people that if you imagine that you’re in a room in which there were a thousand people everyone would know where he was and it wouldn’t be because he’s saying anything you just know. So I found it to be a very wonderful and inspirational experience and of course, there’s probably nobody that I’ve met who is more good-hearted than he is. You know he defines good-heartedness he’s honed this empathy towards other people and you know it’s one of my own ideas of life is that we’re here as for to not just live our life to the benefit of ourselves but that we’re actually designed to be with others and helping them. And We’re designed to be helping everyone in our tribe and beyond that we can. So he embodies that to me so that’s a wonderful experience and then you know the thing about him as great as is that he’s open he listens. You know he would say that, and he seeks an understanding of science. He would say that if science contradicts his beliefs he’s got to reconsider how he’s thinking about things. It’s a pretty enlightened way to think about your approach to your understanding of the deeper things and most important things in the world and beyond.
Bill: [00:48:27] Yeah, That’s fascinating are so glad that you shared that part of the story.
[00:48:33] We’ve touched on the heart a number of times in our conversation. And when I met you earlier this year I bought a copy of your book, soft wired. It’s a great name by the way and I asked you to sign it and you signed it for me and you. Your message was quite profound and it said Enjoy and take to heart.
[00:48:59] Now you know for me that was really interesting when we’re talking to somebody who talks about the brain all the time. Your message was to enjoy what you’ve written for me to take to heart.
[00:49:12] You know I think that’s a really powerful message
Michael Merzenich: [00:49:15] And it seems to me that maybe you have.
[00:49:18] That’s good.
Bill: [00:49:23] So I hope that the people listening and watching will look more into what it means to take something to heart and if it’s a positive thing that you take it to heart it’s going to enhance and accelerate you know good feelings and great times on the planet if you’re taking negative things to heart you’re going to potentially accelerate feeling of pain and other things so you want to make sure we take the right things to heart.
Michael Merzenich: [00:49:50] Absolutely. Absolutely. Why would you live your life in misery and why would you leave your life accepting in a sense that a downhill slide when you can continue to grow and be a better and stronger person?
[00:50:05] You know everyone can have a better life next month or next year because they’ve been endowed with a plastic brain they can actually be stronger and more effective and have a deeper understanding and ultimately greater wisdom or they can continue to slip and slide into increasing insignificance.
[00:50:30] So I strongly recommend a life of personal growth and self-development and with a happy spirit. I strongly recommend it.
Bill: [00:50:40] Thank you so much for your time I really appreciate the opportunity to chat with you and learn from you directly. It’s just amazing the work they do. I really thank you for doing that work.
[00:50:49] I thank not only you and all the teams that you’ve worked with and all the people that have done that work because without them I don’t think that we would be anywhere near being able to at least kind of explain what it is that we can do to help ourselves and know it as a patient. know know what I can do rather than just be told by Doctor to do this or do that
Michael Merzenich: [00:51:14] It’s Wonderful wonderful the see you again Bill and see that you’re going so well
Bill: [00:51:19] Thank you so much and are you in Melbourne or in Australia again anytime soon?
Michael Merzenich: [00:51:24] Well not not not in the next months but I’ll be back.
[00:51:29] I love Melbourne so you know I’ll be back and actually and I have Melbourne visitors staying with me in my house today so it’s part of my life.
Bill: [00:51:41] Excellent say g’day to them for me.
Michael Merzenich: [00:51:44] G’day. I will Well.
Michael Merzenich: [00:51:45] Nice to see you, Bill.
Bill: [00:51:46] Thanks so much.
The post Rewiring The Brain – Michael Merzenich appeared first on Recovery After Stroke.
55 min
July 20, 2020 Better After Stroke – Sheri McIntyre
Sheri McIntyre believes that she is better after a stroke. Sheri feels this way even though the bleeding in the brain due to an AVM (arteriovenous malformation) that ruptured when she was in her early 50s has caused deficits including vision issues, balance issues, and speech issues.
Socials:
www.instagram.com/compassionate.snob/
www.facebook.com/CompassionateSnob/
Highlights:
01:02 Introduction
05:36 Stroke caused by AVM rupture
14:35 How the stroke happened
17:43 I’m better than I used to be
25:49 Dealing with the changes after a stroke
33:26 Raising kids while recovering from a stroke
44:37 Positive recovery mindset
55:25 Not enough support for stroke survivors
1:02:00 Washing off the fake
Transcription:
Sheri McIntyre 0:00
Not like how we used to be I think I’m better than I used to be. And I also think that the doctor made my brain better.
Bill 0:11
How can you say that? How can you be better than you used to be? You’re dizzy, you can’t talk properly, and your eye doesn’t work the same. How can you possibly be better? What kind of thinking happens for you to get to that stage? That’s weird.
Sheri McIntyre 0:26
No, it’s good. It’s a good thing. Because I see things so much differently now. And I’m also about education. And so I wasn’t before, it’s probably because I was Going to go all the time working. And so when I stopped, I just saw things that I didn’t pay attention to before probably.
Intro 0:54
This is recovery after stroke with Bill Gasiamis helping you go from where you are. To where you’d rather be.
Introduction

Bill 1:02
Bill from recoveryafterstroke.com this is Episode 107 and my guest today is AVM stroke survivor and compassionate snob, Sheri McIntyre. Even though the bleeding in Sheri’s brain causes deficits including balance issues, vision issues, and speech issues, Sheri believes that she’s better after stroke. Sheri describes her new voice as sounding like actor Matthew McConaughey’s accent.
Bill 1:28
Now when you get to the end of this episode whether you are watching on YouTube or listening online on your favorite podcast app, please do me a favor and share this episode in other groups you hang out in, this will help someone who is doing a tough at the moment perhaps feel a little better about the journey that they are on.
Bill 1:44
Also, if you feel that this podcast makes a massive difference to you and the stroke community please do me a favor and give the show a five-star review on iTunes or wherever you download your podcasts from. Part of the reason I make these podcast episodes is to share stories of stroke recovery, and the aim is to share all parts of stroke the good, the bad, and the ugly.
Bill 2:06
In the more than eight years since the first bleed on my brain, I’ve spent a long time discovering what supports stroke survivors to heal their brains. All this information is going into a course called 10 Steps to Brain Health the Stroke Survivors. Module One is available now and module two will be released just a few days after this podcast goes live.
Bill 2:26
This is a course that is included as part of my recovery after stroke coaching program that will help you overcome fatigue, reduce anxiety, and support your memory amongst other things. This 10-step program has been created to complement any medical interventions and works in conjunction with any other therapies that you are undergoing.
Bill 2:45
So if you are a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety, this course is for you. If you feel like there is not enough support after you leave the hospital and you’re afraid that your recovery will go backward then this is where I can help. While you are participating in this course I will coach you and help you gain clarity on where you are currently in your recovery journey.
Bill 3:09
I will help you create a picture of where you would like to be in your recovery 12 months from now and I will coach you to overcome what’s stopping you from getting to your goal. To find out more go to recoveryafterstroke.com/coaching. And now it’s on with the show.
Bill 3:24
Sheri McIntyre welcome to the podcast.
Sheri McIntyre 3:27
Hi, how are you, Bill? Thanks for having me. It’s so nice to be here.
Bill 3:34
It’s lovely to have you here too. Now, you’re the first guest I’ve ever had who wears two pairs of glasses at the same time. And I thought it was just a joke, but it’s not a joke. It’s serious stuff. Tell me why you need two pairs of glasses at the same time.
Sheri McIntyre 3:54
Yeah. Okay, well, I have a prism and one of these Right? And so I wear these over them to read so I can see close up. So I wear them a lot when I text on my phone or computer and things like that. But I have to wear them. I never wore glasses before, but one eye is not even a little off. So I need a prism lens. So, we have these two.
Bill 4:24
The first pair fixes that prism, it fixes the eye being out of the right height. And then the other pair helps you read like a normal person supposedly.
Sheri McIntyre 4:38
It just magnifies they’re only magnifiers. I put over these so I can see better. Like when I text.
Bill 4:49
Yeah, there’s an amazing invention waiting for some smart optometrists to create a single pair, that fixes all those issues for us.
Sheri McIntyre 5:02
Yeah, so I sometimes forget that I have them on and so I talk like this because of the stroke. I had to learn to talk all over again. So I sound like I’m from South Carolina. But it’s not that, people ask me, where are you from? I go. You don’t want to know. Wrong question.
Bill 5:33
So what happened to you?
Stroke caused by AVM rupture

Sheri McIntyre 5:37
I had an AVM rupture and a brain bleed, right? So they gave me a craniotomy down the back of my head that I don’t even know how gruesome it was. And so, I have a big (inaudible) back here. They shaved my head. There were a lot of things that they did to me, but I came home and everything was different everything. What I’m kind of upset about is that there is not enough knowledge out there.
Sheri McIntyre 6:18
That’s why you do what you do. Right? Yeah. And I wrote a book. I have no idea how I wrote that by the grace of God. That’s how I wrote that. I don’t know how I wrote it I don’t know. I got home and I kept saying I’m gonna write a book. No one believed me mind you, they just appeased me. They said okay, okay, yeah. I’m gonna write a book.
Bill 6:53
How old were you when you had the AVM burst?
Sheri McIntyre 6:57
51 I think, yeah 51.
Bill 7:03
Wow, how many years ago was that? Do you mind me asking?
Sheri McIntyre 7:06
Four?
Bill 7:08
Awesome. Well, you have one of the most impressive scary I’m not sure scars that I’ve ever seen of a stroke survivor. That scar on the back of your head is one of the biggest I’ve seen.
Sheri McIntyre 7:19
Yeah. It was very brutal. I’ve been told because my cousin works in the hospital and some girl was in, the operating room. And she said that it was gruesome. So I don’t know why he chose to do some of that. But he did. I don’t want to hear it.
Bill 7:46
Have you seen it?
Sheri McIntyre 7:50
What is my scar?
Bill 7:51
Yeah. Have you seen the photo?
Sheri McIntyre 7:54
Yeah. Oh, yeah. Because in my book, Anyway, they shaved my head. And I have a scar right from here down the back of my neck. So I used to say to people who wanted to see my elephant because I thought it looked like an elephant trunk. But, I thought that it had pink rhinestones for staples.
Bill 8:32
What do you mean by pink rhinestones? Like Is that what you thought?
Sheri McIntyre 8:36
Yeah, I thought that I didn’t know where that came from. I’m not blingy at all. I’m not that type of person. But, I thought I go everywhere I go want to see my elephant? And I’ll show them my scar and I thought because I could not see it when it happened I saw the pictures much later because as I saved the drugs, I was on very heavy medication right in the beginning, so I don’t remember a lot, but I do remember saying to people wanna see my elephant? And I thought it was pink rhinestones. But it wasn’t it was staples as someone asked me how many staples I had in there and I don’t know. I don’t know it was a lot though.
Bill 9:34
It was seriously a lot now other than your speech you had your speech affected what else affected your eye we know about what else was affected.
Sheri McIntyre 9:44
Well, like my equilibrium is very, very off. I’m like dizzy it’s so hard to describe. I’m dizzy all the time. Like you know how a kid when you take your kids and give them an airplane ride, you grab their leg, their ankle and you spin them around? And then you put them down. That’s how I feel all the time. That is the only way to describe it. Or I also feel the other way I describe it. It’s like a cinderblock on my head like imagine carrying that around all day, every day. And that’s what I do.
Bill 10:34
Yeah, that’s interesting.
Bill 10:37
Yeah everyone has different symptoms I know.
Bill 10:41
Yeah, you and I, had a couple of discussions about you and what happened to you before you came on the podcast in Messenger on Instagram. And one of the things that I mentioned was that study by Paul Bach-y-Rita a scientist, that’s Passed away now, who discovered how to retrain the tongue to become the center for the balance.
Bill 11:09
And the person that he was helping was somebody who had damage to the inner ear. And as a result of that their balance had been gone. And then they were able to retrain this person to use the tongue to take over that task. It’s neuroplasticity. It was amazing, right?
Sheri McIntyre 11:26
Yeah. That’s wonderful.
Bill 11:29
Have you spoken to somebody about helping you to overcome your balance issues further? Has there been anyone that can help in that area?
Sheri McIntyre 11:38
Not really. I don’t know. I haven’t looked into that. I go to a chiropractor, and she can help me but she doesn’t do neuro chiropractic, right? And there’s a place but it’s hard for me to drive I pass around town I couldn’t drive before. So for me to drive is a big, huge thing. So I drive a little bit around. I don’t go far though, and the place that I have to go to is far and I’m working, and it’s a couple of days that you have to be there.
Sheri McIntyre 12:22
So, it’s hard for me to do that. But I want to, but I will someday because now, I am learning more and more and more about this. And that is why I wrote the book because there wasn’t enough information given to me. I don’t feel like but it’s about it’s for everybody. I don’t think there is enough information given to other people either.
Bill 12:50
Yeah, absolutely. There isn’t. I mean, there is a very common lack of there’s concern by all people whom I speak to in stroke recovery, whether they have been recovering for 10 years or 20 years or five years, there is a concern that there isn’t enough information out there. And that people have to go on their search for information, how to heal, how to recover.
Bill 13:15
And I suppose maybe it is our responsibility to do the kind of work that we’re doing so that we can help because if there is a problem, and you can’t solve it, because there’s nobody else helping out, then we’ve got to take responsibility for that and create communities that are easy to find and easy for people to come to. And I think that’s starting to happen now.
Sheri McIntyre 13:41
And guess what, that is how I found out that information, but when I was able to look at myself, I had to rely on my family to help me and they were so overwhelmed with everything right and they did the best they could. But what’s hard, it’s describing, what you feel like and what your symptoms are. So they had to go back to their jobs. So I was alone. I’m on disability, I can’t work and I hate that. And so I’m finding out a lot of things because now I can use technology to find out before I couldn’t. And that is a big, huge thing.
How the stroke happened
Bill 14:35
Yeah. So, you know, when you had the stroke, what were the circumstances around that? Were you alone? Were you with some family? What happened there? How, did you discover that you were about to have a stroke?
Sheri McIntyre 14:48
It happened I didn’t even know no one knew I had one. I went to the bathroom it was New Year’s Day. I went to the bathroom. And so I guess I didn’t feel right or something. And my daughter knocked on the door. I didn’t want to scare her. I said, Go get your father, because I knew something was wrong. Right. And I came out of the bathroom, and my hands started going like this uncontrollably I said call the ambulance and that was when I fell and I was out.
Bill 15:25
That was it. Wow. So suddenly before that, did you have any idea that maybe something was going on in your head, no headaches, no nothing?
Sheri McIntyre 15:37
Nothing it’s weird it says an AVM you know grows into the artery veins going and it just couldn’t handle it anymore the veins couldn’t handle it. The flow of blood flowed so they ruptured, and it happened in my cerebellum.
Bill 16:05
It happened in your cerebellum, I had an AVM that was near the cerebellum, and it affected lots of things at the time. So how long did it take for you to recover your speech and be able to talk again?
Sheri McIntyre 16:20
Well, I could talk a little bit but I didn’t know. Like, because I was on such heavy medication. And so I used to have no filter, none, I would say whatever to whoever and that was a little bit of a problem. Cuz as you see, I have a big mouth. Like I love to talk. And I will say things like I don’t like you to people and now I wonder why I don’t have many friends. I probably pushed them all away.
Sheri McIntyre 17:05
I’m a brat. But you have to be to get where you want to go. No, you don’t have to be. But I’m fun. I should say, I’m laid back. I’m a brat. But, in a fun way, I would never hurt anybody’s feelings on purpose.
Bill 17:24
Yeah, I understand. And you’re still in recovery mode, your brain not working properly. So it’s not your behavior is probably due to a lot of the stuff that’s going on in your head. And it sounds like your personality was affected for a certain amount of time.
I’m better than I used to be

Sheri McIntyre 17:43
Yes, it was, but now it’s back. I know right from wrong, all that kind of thing. But neuroplasticity, I didn’t have it before. So you know, it’s getting better. And one thing I want to stress that I did not know is that it takes so long for the brain to heal, to get better. So, like, you know, be able to be normal if there is normal, I don’t think there is. But back to the way not like how we used to be I think I’m better than I used to be. And I also think that the doctor made my brain better.
Bill 18:36
How can you be better? How can you say that? How can you be better than you used to be? You’re dizzy, you can’t talk properly. Your eye doesn’t work the same. How can you possibly be better? What kind of happens for you to get to that stage? That’s weird.
Sheri McIntyre 18:52
No, it’s good. It’s a good thing. Because I see things So much differently now. And I’m also about education. And so I wasn’t before, it’s probably because I was going, go go all the time walking. And so when it started, I just saw things that I didn’t pay attention to before probably.
Intro 19:20
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 recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 19:44
If this is you, you may be missing out on doing things that could help speed up your recovery. If you 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.
Sheri McIntyre 20:32
And so now, I’m like, oh, I have a lot of experience.
Bill 20:40
Sheri, could you do that beforehand? Did you have to have a stroke to get to that point?
Sheri McIntyre 20:46
Yeah, I guess I do. Yeah. So not that it’s a good thing, but it is a good thing. I am a better human being for it and that is why, I named the book Compassionate Snob, I found out a I’m much more compassionate than a snob which I never really was a snob. But that is a play on words, right? Because I tried to act like I used to work at a high-end hair salon and all these women come in right? And so I acted like no, I’m better than that. I don’t care. But everyone when they go out, I find wears a mask and they kind of not like the two selves and so I was like that. But now I’m not.
Bill 21:57
Yeah, I know what you mean I can relate to being a better version of myself after the stroke because I started to do things that I hadn’t done before that I always wanted to do. You know, I apologize to a lot of people. I said, Sorry, a lot. I did all those things, you know, and I made sure that I became somebody who I think my kids could look up to, and they could trust and they could be proud of because I wasn’t terrible before. But when I reflected, I wasn’t maybe 100% living my truth. And I didn’t like that.
Sheri McIntyre 22:36
That’s how I was with my daughter. I would do things a lot differently than what I did. People think that material things are what matters, but it’s not just the other way around. It’s not about what I always said, this is about what kind of person you are. Because that is why on Instagram, I’m like, I don’t care. I don’t wear makeup or whatever. I’m real. I’m real. And a lot of people, I think aren’t that way. And so, it’s about what kind of person you are, not what you have, not makeup, hair, all that. That’s ridiculous.
Bill 22:38
Yeah, I agree. I think there’s a place for it as well. But it depends on why you’re doing it if you’re doing it to impress other people, or to fit into a particular group or a crowd. It’s not an enjoyable thing. And I’m talking about it from my experience, you know when I used to try and pretend I was somebody that I wasn’t to hang out with to fit in the group of people. I felt like well, you know, my head was giving me all this information about how amazing it was to be there. But deep down, I knew that that was no fun. And those aren’t real friends.
Sheri McIntyre 24:03
Oh, I learned. You’re right. I learned I can’t point at people that not nice. I learned that through this whole experience. who your friends are, real friends are, did you?
Bill 24:21
Yeah, absolutely. Some went missing. A lot of them went missing and the ones that I wasn’t expecting turned up and they did the most they helped the most. They were the most amazing. And they were people that were around for a long time, but we just never used to see each other a lot. But yeah, they stepped up in a big way. And I didn’t ask them to they just did and it was so refreshing. And you know, they are always great people. And now I know why.
Sheri McIntyre 24:53
Yeah. Oh, yeah. And so I see people so much differently now and now I’m like, I have a big thing always go by now, actions speak louder than words because you can say whatever you want. But action I go by people’s actions, even for myself. If I say I’m gonna do something, I’ll do it. It’s about your integrity as a person.
Bill 25:27
Yeah, I agree. You know, when you woke up from surgery, and you started to get better, and you noticed your voice was different. Did you have any concerns about that? Were you embarrassed by that? Or did you feel any kind of strange stuff going on because your voice sounded different?
Dealing with the changes after a stroke

Sheri McIntyre 25:49
No, I didn’t. And I used to say to people, I used to, like fix my pants like step on them and talk a little bit and go I’m like Matthew McConaughey, he is an actor, you know him. He, like has a twang right? So I sound like that. And so if you don’t like it well, sorry, your loss.
Bill 26:21
Yep. Have you had people respond to you differently because of the way that you talk? Do they make assumptions about who Sheri is?
Sheri McIntyre 26:33
I don’t know because I don’t see that many people. So I’m not concerned with like, how they think? I don’t have time for that.
Bill 26:45
Yeah. What do you have time for?
Sheri McIntyre 26:50
Learning stuff. Learning and writing and music and my family and that type of thing. And not enough hours in the day, because I have to learn everything over again. And I cannot write with my right hand. So I learned to text or type or whatever with my left hand. So I am trying to learn technology, but I have a hard time learning something so it’s a lot slower for me to do. Everything is slower. But I try like hell to keep up.
Bill 27:34
Yeah, you sound like you’re a go-getter for sure. Tell me about your husband. Like what kind of a man is he? Is that alright did he do a good job helping you out?
Sheri McIntyre 27:49
Oh, yeah, yeah he did. And, everyone in my family did, but after what I think They didn’t know because I was always the type to be strong for them. I knew that if I laid back and like, I could do that if I wanted to but it’s not fair to them. You have to be the best person you know, it’s not a fear to make someone else take care of you. I do things and stuff. I said, No, no, no, I’ll do it myself. And that is the only way you’re gonna learn how to do things. Because I have gone to things I say I’ll do this, oh, no, no, go sit down. Other people do that to me. And I don’t like that.
Bill 28:49
Yeah, I know what you mean. It’s about regaining your independence and not having people assume that you’re not capable of something and coming from a lovely place they’re trying to be, you know, loving and caring and they don’t want the worst for you. And they’re doing all these things for the right reason, potentially, you know, but I, know what you mean, because when I go somewhere, and there’s escalators, the stairs that move, then on the and then on the left side or the right side of those, there’s actual stairs.
Bill 29:23
I’ll go to the stairs and walk up the stairs. It’s harder. It’s more annoying, it hurts more, but I do the stairs because I can because one day I couldn’t. And now I can. So I’m going to make sure that I’m not going to go up the escalator the lazy way. I call it lazy now. I talk about it as being something that I can do. So I’m going to do it. I’m not going to miss out on doing that. And if I get tired, I’ll stop.
Bill 29:50
And if I need to hold on to the rail I’ll hold on to the rail, like I know exactly what you mean there’s an easy way to do things and there’s a hard way to do things and I don’t like to take the easy way out. But if I’m tired, really, really fatigued. I’m not silly. I’m not going to do something that’s gonna make it difficult for me. or dangerous. I’ll do the right thing. But, but I know what you mean.
Sheri McIntyre 30:16
Yeah, you know your limitations. Like the other day, I thought, Oh, well, I just took it easy. And like steam bed and Putz around, right? I didn’t do much. That was the wrong thing to do. Because the next day I suffered for it. So you always have to move and have to keep like I exercise. And I go for walks and things like that. I’ll never do that again. You have to move you have to move. You have to because if you don’t use it, you’ll lose it. You know that thing.
Bill 31:01
Very true use it or lose it. I know. And it’s true. I had lost a lot of those things. And I used to struggle reading and typing an email and all that type of thing. And my words would be mixed up when I was typing the email. The letters would be all over the place.
Bill 31:17
But I just kept doing it. And at one point, a couple of lines of email might take me five or six hours, because I didn’t have a sense of time. So I’d be sitting there typing an email. What was important or not important, didn’t matter. And then the whole day would be gone. And I didn’t even finish the email yet.
Sheri McIntyre 31:39
Yeah, not funny. It’s not funny. Well, it was kind of funny.
Bill 31:45
Yeah, it wasn’t then but it is now. And then I could have given up and said, This is too hard. I’m not gonna do that anymore. can’t be bothered sitting here for a whole day to type three lines on an email. What I’m going to do though, is practice and practice and practice and that is what slowly made my brain recover the ability to do that. And I didn’t get concerned that I couldn’t do it. It was frustrating. But it was like, Oh, well, I can’t do it. I’m going to try again. And I’m going to try again and we’ll see what happens.
Sheri McIntyre 32:17
Yeah, and that’s what I did. You have to try. That’s the only way you’re gonna get better. But to a better place you transform. Right? So that is the only way you’re going to get to a better place. Or I could stay where I was. But that is no fun. Who wants to do that?
Bill 32:43
Yeah, I agree with you. Did you have children?
Sheri McIntyre 32:48
Yeah. One she was 16 at that time and so my book I wrote a little bit about her but I don’t put people’s names in there because they did not ask to be written about and I don’t think it’s fair to them. So I don’t put names.
Bill 33:12
Yeah, fair enough.
Sheri McIntyre 33:14
I don’t mention them a lot, I don’t talk about them a lot.
Bill 33:18
Yeah, how did she deal with her mom being so unwell?
Raising kids while recovering from a stroke
Sheri McIntyre 33:26
Awful. And that I think was the worst part. But now she’s alright. But I think at that time, cuz I did everything for her. But this is now what I learned. I wouldn’t do as much for her because they’re not doing anything to help them. You have to let them do it themselves. And even though they struggle. Let them do it themselves. That is the biggest mistake I made as a mother, but now, I know.
Bill 34:06
So you’re one of those mothers, the helicopter parents.
Sheri McIntyre 34:11
Oh, yeah. And now I’m not.
Bill 34:20
And now how is she transitioning? She’s becoming a different version of herself. She’s gone from someone who didn’t have to lift a finger to somebody who has to do some things.
Sheri McIntyre 34:29
It’s hard for her, I’m sure. But I think that she sees that me and my husband are go, go, go, right? And so she’s coming along.
Bill 34:51
I was gonna say she’s a teenager. My kids were teenagers at the time. And they’re terrible 10 agers are terrible all the time regardless of whether their mom’s well, the dad’s well, or not well.
Bill 35:03
They play that role. And then every once in a while, you do have to stretch them and give them some additional responsibilities. And my kids weren’t keen on having additional responsibilities. They just wanted life to be normal.
Sheri McIntyre 35:18
Yeah, It’s very hard. I think to them. They are in a phase that stage where they’re all self-consumed everything about themselves, and then they have a sick parent. That means hell I needed a lot of help at the beginning.
Bill 35:45
Do you experience fatigue? How are you doing these days as far as energy?
Sheri McIntyre 35:51
Well, the one thing I thank God for is that I’m not in any pain. I don’t have headaches. But I do get fatigued but not like, I don’t know, because some people talk about this wicked fatigue. There’s my New England accent. Wicked. And I get tired yeah, but like I have to lie down, but I’m not like, I can’t move but I know when I’m getting fatigued. I don’t talk as good.
Bill 36:32
Yeah. Have you noticed the recovery continuing slowly? Year on year, month on month? Have you noticed it all the time?
Sheri McIntyre 36:39
Yes. Cuz I would not get to be at this point. If I hadn’t pushed myself. Cuz I do a lot of things now that I didn’t before. But in my book, I wrote about that. What I learned and I want people to like I want to help people learn what I didn’t know. And so I think it’s so important for caregivers, I think to know because no one can read my mind, simple things, simple things that we didn’t know. But I could take care of myself. I had to rely on everybody else. Because I couldn’t do anything I couldn’t even think correctly.
Sheri McIntyre 37:35
So I had to rely on others. And a lot of the people now they’re using technology, which is wonderful. And but the other generation like my parents and things, didn’t use it. So there’s a big gap. Oh, this is what I want to say. I got excited. This is a good tip for people, I go to exercise at the senior center. So my sister is a social worker.
Sheri McIntyre 38:08
And so she said to me, she goes, Sheri why don’t you go to the local Senior Center and exercise there? They’ll come and get you because I couldn’t drive. So they would come and get me and drive me to exercise and drive me home. And so, Oh, God, you have no idea how important that was? Because that’s my social life. Not only is it because it’s physically isolating. And you can get very isolated. And, but that was my outing. Exercise. I went to the Local Senior Center, and I still go there.
Bill 38:54
Yeah, good on you. You seem very upbeat, and very positive. Do you have bad days? Do you have those dark days?
Sheri McIntyre 39:03
Oh, yeah.
Bill 39:06
What happened? What do you feel like what do you notice?
Sheri McIntyre 39:13
Just I’m moody something like that. But I just stay away from a big party. But I don’t the one good thing is I don’t have many bad days. And I don’t know why. I’m lucky. I’m very grateful for that. Because I hear of so many people having bad days. And I don’t. Of course, I do sometimes, but not often.
Bill 39:47
That’s great. I know what you mean. I’m mostly upbeat. I think it was my personality always to be upbeat and to be always glass kind of guy and I think that helped me In my stroke journey because that meant that I was already primed in that way I was already looking for those good things. And the mindset that I had made it very possible for me to overcome all the challenges that I experienced, and still I am experiencing.
Bill 40:20
But I still did have my bad days. And I think I get worse when I get tired. When I get tired, my brain is in really dark places, and I can behave inappropriately, and I could be nasty. And I could do all sorts of things and it’s thought who I prefer to be. So it’s really about resting and taking time to recharge and then get back to my full energy level. So do you miss driving and all those things that you can’t do? Do you focus on any of that stuff at all?
Sheri McIntyre 41:02
I choose not to, because why go back? Why do that to yourself? So I just go forward. I do not like driving, far I don’t like it, but that’s where it is right now. And so like we had to drive into Boston, all right, for a few appointments, and I can’t do that. And I feel so bad for people. I have to go with them. I can’t believe it anyway, but I feel bad for people. And that is the problem because I’m more compassionate thinking about people than myself.
Bill 41:48
Uh-huh. So you need help you want somebody to drive you for example to your appointments, but you don’t want to ask
Sheri McIntyre 41:55
Yeah, yeah.
Bill 41:56
Yeah. I understand.
Sheri McIntyre 42:01
I don’t want to be needy, like, I need you. I’d rather do everything myself. But I know sometimes you have to but I’ll ask if I have to, because I am going I have an appointment to go see a cerebellum specialist. And that’s in Boston. And my sister took me I don’t know now, with this whole awful shutdown thing. That’s another thing. Like, are you doing that too?
Bill 42:40
Yep.
Sheri McIntyre 42:42
And but I think people that are stroke survivors, they kind of used to it. So they did the isolation thing beforehand.
Bill 42:57
Yeah, that’s interesting because I was asked about that, and that’s what I said, I’m used to it. It wasn’t anything strange or different. I know it’s going to end. I know that we’ll get back to work and all those types of things. However, some people who are having to recover from a stroke right now don’t have the experience that we have and haven’t got the distance and the learning that they got from five years ago. They’re going through isolation and stroke isolation at the same time. So it’s been really difficult for some people.
Sheri McIntyre 43:31
Yeah, I understand that. I already went through that.
Bill 43:41
Yeah. Especially if I can’t get to rehab.
Sheri McIntyre 43:45
Yeah. It’s hard. A lot of people who are stroke survivors have already been through that. So we’re good on that end I think that a lot of people now are learning. Their eyes have been open because they stopped. So now that same thing that they didn’t do before.
Bill 44:10
Yeah, I agree with you. I love your approach to recovery. I love your approach to life in general, with the fact that why look back, just look forward. I think it’s important for some people to look back to be able to perhaps heal some wounds, some challenges that they’ve faced that are causing them problems in their present so that they don’t take that to their future.
Positive recovery mindset
Bill 44:37
But I just love the way that you go about your recovery. It’s all about you know, how we get better by overcoming and stopping focusing on the things that aren’t helping us and focusing on the things that can support us because when you focus on something negative, you can’t focus on something positive or something helpful, and that takes time away from you being able to put into this positive thing that you can do.
Sheri McIntyre 45:04
Yeah, because I have to learn a new skill all over again. Because I can’t I used to be at work in a hair salon, and I used to be a stylist. But I can’t do that anymore. Because I can’t use my hand well. I can’t cut hair and stand all day and zip around.
Bill 45:32
Imagine they let you go back to work with the scissors in your hand what could happen to that person’s poor head?
Sheri McIntyre 45:40
I don’t want to know they’d have an elephant truck. No, I don’t know what would happen. But it probably wouldn’t be good. But what I am good at is I’m creative. So I just harness that energy and do something else. Like I wrote this book, and I decorate well. I’m in the process of decorating my area, my deck, and outside for summer because you know, that’s going to be where I’m going to be all summer.
Bill 46:20
It might as well look pretty. I agree. Make it as comfortable as possible and make it feel a little bit different if you can because if you’re spending a lot of time there, you might as well enjoy it. If it’s dry, then it won’t be so enjoyable.
Bill 46:37
Yeah, I have a little courtyard in my house. And because of isolation, we can’t go out as much and we can’t be in cafes and restaurants and all those things that we used to do to hang out with our friends. So I’m going to put up some little outdoor lights to make it feel like those fancy cafes so that when I’m out there just feels like a fancy cafe in my backyard.
Sheri McIntyre 47:02
That’s what I do too, well my husband did for me today. outside.
Bill 47:12
Well, there you go.
Sheri McIntyre 47:14
Yeah, that’s good.
Bill 47:15
Yeah. I love it. It makes you feel like you’re somewhere else not at home because we don’t normally see that in people’s homes.
Sheri McIntyre 47:23
No, not at all but that’s good. Because you have to have a little fun. And like, what you can do? I just, mess around with things that I always found things to do. Always, people who say they’re bored I’m like, What? You have a million things to do now with technology you can go on, you can learn you could exercise you can learn this and learn that that’s a whole bunch of things to do.
Bill 48:00
Yeah, there are more things to do now than there ever was. And that’s for some people a problem as well because there are too many things to do. But I know what you mean. Yeah, absolutely. I’m always finding something to do. And even if it’s something minor, like just repotting a single little plant, you know? Just putting some new seeds in the ground or something like that anything, it doesn’t take a long time. It doesn’t cost a lot of money. And it gives me something to do at every day every day, I have to go back and make sure it’s got water and do all that.
Sheri McIntyre 48:34
Yeah, it’s good. You can watch it grow. That is a big thing. Like people, you have to grow. You can’t stay stagnant, but you should grow. So that’s what we’re doing.
Bill 48:54
Yeah, absolutely. I agree. Hey, when you were in recovery, what was it like to learn how to walk again? Was that easy? Or did you have some challenges trying to get back on your feet?
Sheri McIntyre 49:07
Oh, it was hard. And yeah, it was scary. In this book the reason why I write think think, right? I have a bookmark because now I can a lot of people don’t use their brains as their human computers. So you have to use it well, you don’t have to use your brain you can just zone out, I guess. But, my physical therapist came over here. They did a home evaluation, and she put down duct tape everywhere I should go right? And I was a good patient. I wouldn’t do what I wasn’t supposed to I went by the rules.
Sheri McIntyre 50:06
But there was duct tape everywhere I had a wheelchair and a walker and then a physical therapist came over to my house right a different one. And she said now we’re gonna practice not with the walker because I could get up right but the walker but I remember going to rehab with a walker, right? I would hold on to it for dear life cuz if I didn’t have that, all bets off.
Sheri McIntyre 50:47
And so then they switched me from a walker to a cane. I remember my physical therapist took me outside and gave me a cane and said okay, now we’re gonna practice I was like, Ah, no. She goes yeah, I go no. Right. I was so scared to do it. I was afraid to fall. But it took me a while to walk. And so I just recover but it’s just like a baby. I’m a baby.
Sheri McIntyre 51:26
I think a lot of people who have strokes or babies, they’re back and have to learn everything over again. But like you said, neuroplasticity you can learn. But it’s scary because you know, the ramifications if you fall or hurt yourself with something. As a baby, I don’t think you know it. And so I had to learn everything over pretty much.
Bill 52:00
Are you comfortable getting around the home now quite safely?
Sheri McIntyre 52:03
Yeah, I can walk. It’s cuz of exercise. But sometimes if I’m dizzy, I’ll hang on to the wall. I went into my daughter’s bedroom to check on her. She goes, why are you leaning up against the wall? I was in a corner. I go because the wall is right here. And I’m leaning up against it for my balance. Because I think what happens is, a lot of people forget that you have a stroke. Because you look like you’re fine. You probably have this too all the time. And so, um, it’s an invisible illness, right?
Bill 52:54
Yeah, for a lot of people that is if you’re not in a wheelchair or wearing a prosthetic or something. People don’t see it. And it’s kind of good. And then it’s a little bit difficult because you have to continue to explain to people what the issues are.
Sheri McIntyre 53:11
Yeah. That’s why I wear this all the time Brain Aneurism Foundation. They endorsed my book back here, right? But I wear this all the time to tell people because I’m not shy about it. I talk about it all the time because I’m trying to educate other people right? Like, for instance, I was at a grocery store, and I was getting something printed at kinkos from my book across the street, right? And the lady in the ticket line said to me, (inaudible) something from my book.
Sheri McIntyre 54:03
She goes, oh what are you writing about? I go brain aneurysms and stroke and that kind of thing. I go, Why? She goes, that is what my brother died of. And she goes I have a brain aneurysm also. Yeah. So everywhere I go, this has happened to me more than three times I think at different places. And because I talk so much to other people, I think it’s much more prevalent than what people think it is. They don’t talk about it. Well, I do. I talk about it all the time.
Bill 54:51
I’m good on you. I think the stats about the amount of people who have a stroke worldwide is one in six people will have a stroke. in their lifetime, like it’s huge.
Sheri McIntyre 55:04
Yeah. And I don’t know why. Well, people are starting to talk about this community now. People are doing things by that. And what we have to do is educate people about it. Plain and simple.
Bill 55:23
Yeah, there’s not a lot of education.
Sheri McIntyre 55:24
And you’re doing that.
Not enough support for stroke survivors
Bill 55:25
Yeah, you too. And there’s not a lot of education happening. In Australia. There are a lot of bodies who are trying to do great work, and they are doing some great work. But there’s still not enough about it. You hear about multiple sclerosis getting spoken about all the time. There are fundraisers, and annual fundraisers, which are great. And then you hear about cancer survivors. They do fundraisers for every kind of cancer and that’s great.
Bill 55:52
But you don’t hear about a stroke one you never hear about a stroke one and it’s a real challenge because there are so many people affected and stroke affects people forever. And 30% of people who have a stroke will have a psychological challenge, mental health issue challenge, you know, 20% of people will pass away like, the statistics aren’t that good, but for some reason, there’s not a big conversation about it. And that’s what I’m struggling with.
Sheri McIntyre 56:25
Yeah, and I don’t know why. There’s not enough information out there because people need desperately, this information, and they don’t have it. And that is what I get upset about.
Bill 56:43
Yeah, one of the things I think of is because it’s invisible in a lot of cases, and a lot of people don’t notice it. And the same with mental health issues. You know, we are starting to hear people talk about it. But the reality is, is that for people with mental health issues, you can’t see it and when you can’t see If you make assumptions that they look fine, they must be fine.
Bill 57:03
You know, and it’s not sexy to talk about mental health issues. And I know that cancer is not sexy either. But, you know, it’s mental health issues are completely invisible and people can’t relate to them at all. And they’re still afraid to talk about mental health issues. Because there’s a big stigma.
Sheri McIntyre 57:26
I don’t have mental health issues. I’m forever grateful for that. But I know that people that do and it’s awful, what they have to live through. It’s awful. And so I am a big, big believer in talking about it. Don’t hide it and talk about it because that is the only way and I’m a big team player because I learned that it’s the only way you’re gonna impact other people is by being a team.
Sheri McIntyre 58:06
You can’t do it alone. Just like people let the stigma of brain health, TBI, or whatever mental health we need people to talk about it. Don’t be so isolated everybody. But I think it’s changing because I think people like the older generation, how we were raised by parents was keep quiet about that thing. And now we’re like, uh-uh.
Bill 58:45
That doesn’t work well. Just makes things harder.
Sheri McIntyre 58:48
No. And then, when you feel alone, and I don’t want anybody to feel alone.
Bill 58:57
Yeah, fair enough. How long did it take you to write your book?
Sheri McIntyre 59:03
Two years. and look at this.
Bill 59:08
How many pages?
Sheri McIntyre 59:10
100?
Bill 59:11
Well, that’s okay. That is like, wow, that’s like 50 pages a year. That’s one page a day, though. If you think about it, that’s one page a week.
Sheri McIntyre 59:22
Yeah, it took me a long time to do. It took me a long time because I would go with this. And I didn’t know how to use a computer well. But I have a pretty funny story.
Bill 59:22
Yeah, that’s one page a week. And at the end of that, you had 100 pages. And it just goes to show you if you start and you just keep being consistent, you get to the end, and you look back and you go, wow, I’ve done this. It’s taken two years, but I actually physically have done it and there’s a book and now people can buy it. Where can they buy it from?
Sheri McIntyre 1:00:05
Amazon it’s in my link on my Instagram. And I am reading it on Instagram. I’m reading it by two people, not a lot. It’s only a couple of pages.
Bill 1:00:26
But it’s an easy read. It’s called Compassionate Snob: Washing off the Fake by Sheri McIntyre. Is it Sheri or Sheri?
Sheri McIntyre 1:00:39
Sheri.
Bill 1:00:49
I love it. At Amazon people can buy it for $9.28 this is not a promotional video, but I feel like I need to tell somebody on Kindle It’s only $9.28. Anyone can buy that hardcover is $19.99. And paperback is $12.34. Now, if somebody wanted a signed copy, can they get one?
Sheri McIntyre 1:01:17
If they want, well what I did do? Yeah, I guess I don’t know. I’ll sign it, but I had a book launch. And I had a raffle in which I gave all the money to the Brain Aneurysm Foundation I tried to raise money for them. And what I did I have a stamp, and I stamp it. Yeah, because I can’t write well. That’s pretty good.
Bill 1:01:51
That’s a very quick way to sign books without having to worry about getting tired.
Sheri McIntyre 1:01:57
Yeah, I just stamp it, stamp it.
Washing off the fake

Bill 1:02:00
But yeah, fantastic. You know, it’s really good I love your cover, I love the way that you’ve created this idea about washing off the fake because a lot of stroke survivors need to do that they need to wash off the fake it makes it very difficult to continue life being the way that some of us walk. And I know that if I had continued to be the kind of person I was before, this whole experience would have been a waste there wouldn’t have been anything for me to grow from and learn from.
Bill 1:02:25
And I don’t want to be that stupid. I want to be a little bit smarter than that in my life, you know. So I love the fact that you’ve put so much effort into getting a book out to just also be a great example for other stroke survivors that if you put your mind to something and you put the effort in, it doesn’t matter how long it takes. You didn’t have a timeline on it did u right?
Sheri McIntyre 1:03:01
No. But guess what, this is a funny thing. I said to my sister, I go, Well, wanna know what my next book is? Does she go to your next book? I go yeah I’m gonna learn a lot more which I don’t know if I’ll write another book ever. I have a lot to do. What I don’t know, but I’m pretty creative. I’ll find something to do.
Bill 1:03:31
Yeah, well, I’m looking forward.
Sheri McIntyre 1:03:32
I want to help other people.
Bill 1:03:34
Yeah, you are doing a great job you are. I’m looking forward to continuing to follow you and learn from you and also seeing what your next project is. And I’ll make sure that everybody who’s listening can go to the link to find the book on Amazon very easily. And also connect with you on Instagram. If they like I know that you’re a good person on Instagram.
Sheri McIntyre 1:03:58
Yeah, and guess what? My name is? On Instagram is Compassionate Snob,
Bill 1:04:03
Compassionate. snob,
Sheri McIntyre 1:04:04
Compassionate Snob, but I don’t think people understand they’re probably like, oh, she a snob blah blah. No, not at all. I just do it because I used to kind of be but it was fake.
Bill 1:04:25
So being a snob was fake.
Sheri McIntyre 1:04:30
Yes. But I just acted like everybody else in the business. And then when I was pulled away from that when I was alone, I realized I’m much more compassionate. I’m not like that.
Bill 1:04:50
Were you a snob away from work, so did it come home with you the pretend snob did that come home with you.
Sheri McIntyre 1:04:58
Yeah, but when I was left alone my brain started coming back to me. I was like why did I act like that that’s stupid. Why wasn’t I? I think if you’re nice though people do tend to take advantage of you. So you have to be a little bit not mean, but like, forceful but I want to explain some I’ll be honest with them, but I feel like a lot of people don’t want to hear the truth.
Bill 1:05:44
A lot of people don’t wanna hear the truth, the truth can hurt.
Sheri McIntyre 1:05:49
Yes. And, but people can tell me the truth. I try to be nice. I try. But sometimes it doesn’t always work. Sometimes I have to be a little forceful.
Bill 1:06:06
I agree. I was gonna say there’s a post I made on Instagram just a few days ago. It was something apparently that the Greek philosopher Plato said and he said, most people are not just comfortable with their ignorance, but hostile to anyone that points it out.
Sheri McIntyre 1:06:26
Ah, that’s a good one.
Bill 1:06:29
That’s true, isn’t it? Like if you tell somebody they’re being a little bit silly or ignorant or most people don’t want to know that they just want to continue to believe what they believe and act, how they want to act, but don’t want to be told.
Sheri McIntyre 1:06:43
No, that is wrong. Because I get so upset when people say something about someone I’m like, that’s not nice. It’s not nice. I’m like that in my mind, this is what I didn’t think of before. I think like, oh, if they’re saying that about someone that makes me look at them differently. I should say that did not like someone I wanted to be around. And I think what you’re around influences you.
Bill 1:07:30
Yeah, And you were around all of that stuff because of your work. It’s is that the place hung around is that the type of people you used to normally hang around with? Or is it just because of work?
Sheri McIntyre 1:07:41
It was, but work became my whole identity. So there wasn’t, there was just work, and now used to socialize with people from work.
Bill 1:07:57
I see what you’re saying.
Sheri McIntyre 1:07:59
And everybody is about how they look. And that is why sometimes I’m like, I’ll go on Instagram and no makeup. And I hate that. Because that is not a true person.
Bill 1:08:16
Yeah, I know what you mean. Well, as you can see, I go on Instagram on YouTube. I go everywhere with no makeup and no hair care. No nothing. When isolation happened I haven’t shaved since then becoming a bit crazy so soon I’m going to get rid of it. And not because I’m trying to impress anybody, just because it’s starting to annoy me.
Sheri McIntyre 1:08:40
It’s itchy?
Bill 1:08:42
Yes, itchy? It gets really dirty this whole beard gets dirty when you eat all your food goes around it. It drives you crazy. So it’s not for me. I’ll get rid of it soon. Sheri McIntyre. Thank you so much for being on the podcast. I appreciate it.
Sheri McIntyre 1:09:06
Thanks, Bill it was nice talking to you.
Intro 1:09:09
To discover how to support your recovery after a stroke go to recoveryafterstroke.com
The post Better After Stroke – Sheri McIntyre appeared first on Recovery After Stroke.
1 hr 10 min
July 13, 2020 Weight Training After Stroke – Kelly Studebaker
Kelly Studebaker has been recovering from the challenges of a ruptured AVM from the tender age of 11. In the years that followed she has overcome many of stroke life’s challenges and achieved so much.
Socials: www.instagram.com/thiscriplife/
Highlights:
00:32 Introduction
02:01 Arteriovenous Malformation
11:35 A snowball effect
16:29 The importance of counseling on stroke recovery
26:01 Never say never
34:45 Deficits and challenges after stroke
39:45 However long it takes
47:59 Emotional issues
Transcription:
Bill 0:00
You know what? I want to highlight this I want to highlight that it took you five years to get there. And I think that’s an amazing feat because you know, stroke survivors need to know that if you can put something in your mind, it doesn’t matter how long it takes, you can most likely get there, just work towards it every day. Small steps and you’ll get there.
Intro 0:24
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Introduction

Bill 0:32
Bill for recoveryafterstroke.com This is Episode 106 and my guest today is Kelly Studebaker. Kelly became a stroke survivor at age 11. Due to a ruptured AVM and almost 40 years old now, she has recovered so well that she decided to become a one-armed powerlifter.
Bill 0:51
Now just before we get started, if you’ve just found this podcast, you might not know that you can download the full transcript of this episode from recoveryafterstroke.com. Simply go to recoveryafterstroke.com/episodes, scroll to find the name of the episode you just listened to click on the link, and scroll down until you see the orange download transcript bottom.
Bill 1:15
Click the Download Transcript button. Enter your name and email address and your download will begin. Also when you get to the end of this episode, whether you are watching on YouTube or listening on your favorite podcast app, please do me a favor and share this episode. In other groups, you’re hanging out in.
Bill 1:31
This will help someone who is doing it tough at the moment perhaps feel a little better about the journey they are on. If you feel this podcast makes a massive difference to you and the stroke community please do me a favor and give the show a five-star review on iTunes or wherever you download your podcasts from. And now it’s on with the show.
Bill 1:49
Kelly Studebaker Welcome to the podcast.
Kelly Studebaker 1:53
Hello.
Bill 1:55
Tell me a little bit about what happened to you
Stroke caused by Arteriovenous Malformation
Kelly Studebaker 2:01
So I was 11 I’m 39 now I had a cerebral hemorrhage, which was an AVM arteriovenous malformation. I hope I’m getting that right. And they rushed me to the hospital and I had my first brain operation, just to stop the bleeding and, you know, for them to get in there to see what was wrong. And then I waited for three weeks because they wanted to see if I would survive.
Kelly Studebaker 2:47
During that time I had a coma and then that lasted for 10 days and then they titrated me off medication so I could wake up because they didn’t want my brain to swell. And then I pretty much started physical therapy. I don’t know the timeline because I was so out of it drugged up.
Bill 3:24
And you were young you were only 11 years old. Were there any signs before that, then I imagine you spoke with your parents about it was there any type of sign that might suggest that this little innocent 11-year-old was about to have a bleed in the brain?
Kelly Studebaker 3:42
So I would get these headaches, which now I know that headaches are pretty, you know, substantial to having a stroke but it was the 80s. So you know, if I had a headache, I would just lay down it was probably a migraine just because. I wouldn’t like light.
Bill 4:28
So where do you sound sensitive as well? Or it was just light?
Kelly Studebaker 4:32
Yeah. Now that I’m looking back on it. I mean, I didn’t have headaches all the time, but when I had them they were pretty intense.
Bill 4:54
And when you wake up, perhaps can you recall all that you had to learn and how to do again what you had to regain. So you would have been 11 years old until after surgery, what was it that you lost?
Kelly Studebaker 5:12
I had to learn basically how to do everything over again because my right side was paralyzed. And that was my dominant side. So I couldn’t talk because of my stroke. So my mom found out that I could write, but I was writing with my left hand, so it was scribbled. Just so she could, you know, communicate with me. They didn’t know if I would ever be able to speak again. Because the part of my brain where it happened that part of the brain really speech is that part.
Kelly Studebaker 6:16
And my right hand It’s like, behind my left ear. So I don’t know what section that is. But yeah,
Bill 6:28
It’s an important section.
Kelly Studebaker 6:30
Yeah, for sure.
Bill 6:34
So then at some point, you would have gone back to school. Did you have to? Was that a big struggle? Do you recall what kind of challenges you faced when you went back to school after this experience where your body was not working the same way that it was before the bleed?
Bill 6:54
So I had when I got shipped down to Children’s in Cincinnati, Ohio, which I probably don’t know where that is, but it’s a very good hospital and I had my second operation to fix the brain bleed. Because I knew I was surviving. And then they had physical, occupational, and speech therapies and I did that. every day.
Bill 7:41
I was in the hospital for about three months. And then when I went home from the hospital, my mom and my dad were working at the time. My mom would drive me down there two times a week. Just for physical, occupational, and speech therapies.
Bill 8:06
When I went back to school, like getting on the bus. That was a whole new experience for me because half my body didn’t work. I walked with a cane for a while. I don’t think that I went to school with a cane. I don’t. I’m pretty sure that I didn’t but I was a lot slower because of the stroke, because I can’t run you know, I can’t even now I can’t run.
Bill 8:46
So like, I had an aide and she would give me like five minutes. The school would give me five minutes. So I could get out of class, I could go to my other class and then, you know, all hell would break loose and all the kids would come out of the classes. And then, you know, it was a big change. But my family and my friends protected me. I wouldn’t be where I am today, without them.
Intro 9:31
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 recover? What things should I avoid in case I make matters worse, doctors will explain things, but obviously, because you’ve never had a stroke before. You probably don’t know what questions to ask.
Intro 9:56
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. 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 10:43
In the 80s, when you went through that, were there a lot of support services for a child who had experienced such a traumatic event? Did you have counseling was it therapy was anything to help you?
Kelly Studebaker 10:58
So I had it in 92 and there were physical, occupational, and speech therapies. I didn’t go to a counselor to deal with my head stuff. I have been to two of my counselors to deal with my head stuff, like mental stuff a couple of times just because it’s a lot
Bill 11:28
Do you mean it’s a lot to deal with, or there’s a lot to overcome? What do you mean by that?
A snowball effect
Kelly Studebaker 11:35
Well, I’ve had an interesting life. Four of my friends have passed away and my dad has passed away and stuff. So after those, you know moments of hell. I didn’t know where to turn and I would go inward and like, freak out. So that’s when, like, after my dad died and after actually, I had a tragic experience with a boyfriend of mine. And after he died, I had counseling just because I didn’t know how to deal with it. And like anybody, like nobody knows how to deal with stuff.
Bill 12:39
Do you find that there are unresolved things that also come into play? So, life goes on. Everyone has a traumatic experience like a stroke experience. And then life goes on normal regular life, things happen. Did you find that when those other things happen, then it kind of added to what you’re all already gone through in life? And perhaps too much to deal with because you hadn’t dealt with other issues?
Kelly Studebaker 13:08
It was like a snowballing effect. Like, I have all this other stuff to deal with because every day that I live is like a recovery day. And nobody goes over that with you. But every day when I wake up, I realize that half my body is kind of screwed up. So yeah and then adding on, things that I’ve had to go through during my life.
Kelly Studebaker 13:52
It kind of shocks the system, it is kind of like you don’t know what to do with it. didn’t know what to do with it.
Bill 14:02
By counseling, or talking therapy helped? How did you find that helped you?
Kelly Studebaker 14:10
It was, you know, I went to a grief counselor, and they just talked me through scenarios and stuff like that just because I went to two years of grief counseling when my dad died and two years of grief counseling when my boyfriend died.
Bill 14:41
So it helps talking about it helps and getting another person’s perspective helps. And did you feel better when they kind of made it normal? In that people die, you don’t feel well you don’t know how to deal with it. Did it kind of make it feel better for you that you know that okay other people go through this thing as well? And I don’t have the skills to deal with it. But now that I’ve been to counseling, I have a better understanding of the whole process.
Kelly Studebaker 15:14
I think that early on when I was rehabbing, like my junior high years, that’s when people’s brains started developing, and I didn’t have time to get all that information. I was still at the trauma of my stroke. So I guess I was like, not innocent, but naive, and then when stuff happened, like, I’m like, Hey, I didn’t get I don’t know what to do here. And that pissed me off. Like, I couldn’t deal with it on my own. I’m a very stubborn person.
The importance of counseling on stroke recovery

Bill 16:29
You kind of have to be a stroke survivor and continuously go through rehabilitation, every single day all the time constantly on the road to recovery. So that’s a good thing. But if it’s getting in your way, and it’s interfering with your recovery, then then it’s a bit of a challenge. I reason I asked you about your counseling and your therapy and all that kind of stuff is just for people who are listening and watching to get a bit of an understanding of what happens and why we might have void counseling, and then how counseling might help us move on and move forward.
Bill 17:04
And also the complexity of life. And then, for stroke survivors, there’s a little bit more going on with regular life than regular people who are well, and we’ll call them people who haven’t had a stroke or a serious health issue. There are usually more complicated situations happening when you throw a stroke in the mixer into life.
Bill 17:29
And if people have been avoiding going and speaking to somebody and getting some talk therapy or getting some understanding about what, you know, what their feelings and their emotions are doing, then it’s just gonna sit back there stroke recovery a little. And a lot of the times I hear a lot of stroke survivors say I did a heap of physical therapy. I did that for five years or 10 years and then one day I realized that I never did the emotional therapy that I needed I never healed from all that stuff.
Kelly Studebaker 18:01
Yeah. Like, sometimes I remember stuff even now. And I’m like, I am so angry about that. And that happened when I was 11. Like, it’s so weird. But I guess everybody has to go through what they have to go through.
Bill 18:29
And the fact that you have that realization at some point in your life is a great thing. But how silly is it? And I know what happens. So I’m not, I’m not playing it down. But how silly is it? Because I’m the same I’ve done the same thing. How silly is it to be angry about something that happened when you were 11 and now, nearly 40, and you’re still going on about something that happened at 11?
Kelly Studebaker 18:53
It’s challenging at times and I’m laughing about it because It hasn’t driven me crazy, but it’s been a challenge.
Bill 19:11
Yeah, but now that you’re aware of it, is it easy to let go of that thing that happened when you were 11 and move on?
Kelly Studebaker 19:19
Yes and no. I’m a very physical person. like, I’ve done competitive powerlifting for a while, like five years now I’m out of it. Out of the circle. I guess you can call it but like I’ve done a half marathon on a rower just because I thought I couldn’t do it. So I did it anyway. I’ve flipped over tractor tires like I’ve pulled a car and those things make me happy. I am in ballet. I’ve always been in some sort of dance ever since I was little.
Bill 20:20
So you said that you can’t run or do anything like that, but can you stand and walk?
Kelly Studebaker 20:28
Yeah, I can stand and walk and I do pretty intense workouts because I can.
Bill 20:43
That’s what I do about walking up a flight of stairs. So if I go to a public building, or a big building somewhere where they’ve got escalators, or an elevator, instead of going in the escalator and the elevator, I make sure that I take the stairs and the only reason I do it is because once Upon a Time I couldn’t.
Bill 21:02
Now that I can I’m never taking an escalator or elevator if I can avoid it.
Kelly Studebaker 21:09
So there was somebody in Dayton, Ohio who got a hold of me some of the firefighters, and wanted me to do a 911 stair climb. And that’s like 111 flights of stairs. And I’ve done that. Three years. Last year, I had to take a year off because I had a headache. And, you know, when I have a headache, like, it’s no joke. I’m down for the count.
Bill 21:50
Nothing’s happening.
Kelly Studebaker 21:51
Yeah.
Bill 21:52
So do you think that kind of weirdly, experiencing a stroke at 11 kind of puts you a little bit in a situation where you’ve got a lot of time to create a good recovery? And therefore, you benefited from having a stroke at 11. Because most AVMs rupture in people’s, mid-30s to mid-40s.
Kelly Studebaker 22:22
I think helped me. I was so young and my brain was still developing because your brain doesn’t stop developing until you’re in your 20s. So I had a lot of neural plasticity happening. And then like, my brain was like, Oh, wait a minute. We have to switch gears. And I’m doing so well because I was so young and I know what my body, goes through before like adulthood because as you get older, your knees start to wear out, you know, everything starts to wear out.
Kelly Studebaker 23:21
So you just have to have you have to stay physically active, especially for stroke survivors just because, you know, once you stop, you lose it all. And that’s just horrible.
Bill 23:39
Just keep going. I know I agree with you. So you know, your 11 year experience a stroke and you’re starting to recover. did it affect did the stroke affect you growing up in that critical time when you were a teenager and you’re starting to think about you know, who you liked and dating and all those types of things?
Kelly Studebaker 24:03
Yes, I didn’t have a relationship until I mean, I went out with a boy to prom or whatever, but like, I didn’t have a relationship until college because I was just, you know, trying to get better from my stroke and had homework and, you know, lots of things that just, the relationship wise stuff kind of fell away. Just because I was dealing with a lot of stuff.
Bill 24:52
And then you finish school. Did you go to college? Did you study to do something specific?
Kelly Studebaker 25:01
I went to school. I thought I wanted to be a pastor, but that all changed. But I went to school and I graduated with my Bachelor of Arts degree and communication from Ohio State. And I always wanted to do that. And a lot of doctors said that I couldn’t do that. They didn’t even think that I could finish high school. And I was on a track to prove them wrong.
Kelly Studebaker 25:44
A lot of my accomplishments have been stuff that people said that I couldn’t do. So I’m like, Well, I’m going to prove to you that I can do it. So you know, watch me fly.
Never say never

Bill 26:01
You’re one of those people, I love that I was one of the opposite. Somebody told me I couldn’t do something, I believed them. And it took me a while to get over that in my life. You know, I think I was 30 before I started to get over listening to be able to say something is not possible. Now I had my brain hemorrhage at 37.
Bill 26:20
So I only had just started growing up at 30 when I started not paying attention to people telling me that something’s not possible or I can’t make money working in that field, or I can’t do that, or whatever. So I love the fact that I come across people who do something just to prove somebody else wrong.
Kelly Studebaker 26:47
Did you have your stroke did it happen on your left side, or does it happen on your right side?
Bill 26:54
It happened on my right side.
Kelly Studebaker 26:56
Okay. So your left side is affected.
Bill 27:03
My left side was affected. So on my left side, I’ve got numbness from the top to the bottom, and pretty much from the middle of my chest over. So I can stand, I can walk, I can run, not a marathon, but I can run. I could probably run a marathon if I wanted to, but I don’t want to.
Bill 27:26
And I have a couple of balance issues. So when I get tired, I get a little bit more wobbly. Riding a bike was a real issue because my foot would get tired and it would fall off the pedal. And then I would lose my balance. If I put my foot on the ground. I didn’t know where my foot was. So I would fall over those types of things.
Bill 27:49
But most people who see me wouldn’t know that I’ve done anything wrong. But for me, every day when I wake up my left leg has to kind of wake up as well. And I’ve got to tell it remind it that you’re on the ground you know, make sure you’re paying attention so that I don’t trip over or anything like that. And my left side is cold much colder than my right side.
Kelly Studebaker 28:19
Yes. In the wintertime, it is fierce like I have to wear super heavy socks. And when I go to sleep at night, like this whole side is like chilly chilly.
Bill 28:38
Do you ever get in summer you know what I get? I get perspiration on one side of my body but not the other.
Kelly Studebaker 28:46
Now I don’t have that problem.
Bill 28:52
So my left side doesn’t get sweaty and my right side does so it takes a bit longer for my left side to feel like it needs to be sweaty. It’s like two different people living in my body simultaneously.
Kelly Studebaker 29:06
You have two different sides of your body. And if they’re squashed together,
Bill 29:10
Did somebody challenge you that you couldn’t knit and you thought you decided to start knitting?
Kelly Studebaker 29:17
Oh, okay my sister taught me how to knit on looms about nine years ago. And I’ve done like probably 500 to 600 hats. Like for people just, hey, here’s a hat, here’s a hat you know. And just recently, I have started to do hats with brands. I finally learned how to do that. And then I’m working on a scarf. That isn’t a tube it’s just one. It’s cool. It’s really warm. I like it this winter.
Bill 30:12
I see you wearing it on your Instagram. I’m going through your photos now and I can see the scarf.
Kelly Studebaker 30:18
I love to knit. I just love it. It’s like my peacetime.
Bill 30:27
It’s like your peacetime what does it help you?
Kelly Studebaker 30:30
Just mellow out and just do something creative.
Bill 30:42
Yeah. And it’s not something that you have to go and do anywhere. In particular, you don’t have to put a lot of effort in. You just need to get some needles. Sit down with a couple of balls of wool and go for it right?
Kelly Studebaker 30:55
Now Actually, I have a loom. Oh, circle loom. I do it because my right hand doesn’t work. I mean, it’s just my right hand is just around for you know. I don’t know it’s just hanging out when you see me walk, you can tell that you know something happened.
Bill 31:27
So you know how you’re now nearly 40 and you’ve had almost good age. I was gonna ask you have you been surprised over the years when you’ve noticed something come back or start to work? That took a long, long time to come. Have you had any surprises like that? The years where one day you just noticed something was different.
Kelly Studebaker 32:05
So in what year, my boyfriend died in 2013? And he told me that I couldn’t flip over a tractor tire a month before he died. And like, I didn’t say anything but that was just like bumbling in my chest. I’m like, Oh, no, you didn’t. So I went into this gym, and it was a powerlifting gym. And when I went in there, it was just all Viking dudes with long beards and it was bench night and everybody was looking at me weird.
Kelly Studebaker 33:00
And I’m like, what am I doing in here? I just wanted to flip over the tractor tire. And I went in for a boot camp class, and it met like three times a week. And that’s what I told the instructor and little did. I know, she was a physical therapist. So she had me flipping tire tractor over in four months from that time, so yeah, and it just kind of built on. I’ve gotten much more confidence in myself because I’ve been able to work out with weights know what I’m doing and be confident that I’m not going to hurt myself. Which I have done, but I get back up and I go so it was kind of like our rediscovery of myself.
Bill 34:22
Yeah, I’m looking at one of the photos and you lift a barbell with two yellow on the side. I don’t know how heavy they are. Wearing a brace your right arm is not working and your left arm is.
Kelly Studebaker 34:44
Jacked.
Deficits and challenges after a stroke

Bill 34:45
How do you deal with trying to get balanced, sort of strength or muscles in both sides of your body when you’re when one of your hands is not able to do the weights how do you work that?
Kelly Studebaker 35:05
So I just basically told myself that my right side is going to get stronger without a doubt. But it’s not going to be as well defined as my left side because I’ve been working out my left side, my entire life. You know, there’s lots of times when I’ve carried up my laundry up and down the stairs, you know, so I mean, my right side is, stronger, but not as strong as my left side.
Kelly Studebaker 35:52
I mean, you can tell a difference between my calves just because I’ve been walking with this left side being dominant for 28 years, so it’s going to, I’m never going to match. Like, I’m never going to be symmetrical. And I always use when I was growing up, I would always wear jeans because I didn’t think that people could see my disability through my jeans, which was not true,
Bill 36:38
It helped you.
Kelly Studebaker 36:40
Yeah.
Bill 36:43
That is interesting to me. I don’t lift any weights or anything like that. But my chiropractor noticed that my left side is a lot less defined than my right side and I don’t have that level of disability all I have is numbness and a preference to avoid using one side because if I try and do barbells and or benchpress on the left side gets a bit shaky, I get panicky and of course, my right side can lift way much more than my left side.
Bill 37:23
But it kind of always in the back of my mind that I might drop the left side because my hand might just go to sleep in a second you know sometimes and he’s noticed that there’s a massive difference and I don’t notice that I’m referencing one side over the other. But I can imagine what it’s like for you, especially as a powerlifter lifting with one arm that much weight is a cool thing do you have to do things slightly differently than the regular abled-bodied person because you’re gonna kind of shift your balance somehow, to protect yourself differently.
Kelly Studebaker 38:11
There’s this cool guy that I got to know, early on in my powerlifting, you know, journey, whatever. And he hurt himself in a motorcycle crash, so his right arm doesn’t work. So he lifts with one arm. And I met him, and we just started talking. And he’s like, well, you can deadlift, and that’s what I’m doing in that picture.
Kelly Studebaker 38:54
And I’m like, No, I can’t like how and he showed me like the fee like you have to get your feet lined up a certain way because of my disability. And I just, I started low like, I couldn’t do what I was doing in that picture like that took me like five years to do. And I think I did like 10 reps and 120 I don’t know 121 pounds. But that was when I was, you know, training and stuff. And now with this pandemic going on and stuff, I couldn’t do that.
However long it takes

Bill 39:45
I would say, you know what, I want to highlight this, I want to highlight that it took you five years to get there. And I think that’s an amazing feat because stroke survivors need to know that if you can put something in your mind. It doesn’t matter how long it takes. You can most likely get there and most likely do that thing, just work towards it every day. Small steps and you’ll get there.
Kelly Studebaker 40:09
Yeah, like I didn’t know. I love Tarot. It’s a rowing machine. It’s called the Sea to Rower. You see him a lot in CrossFit. And I love to row it’s something. It’s not. I don’t get the feeling of running, but it’s more. It’s like a full-body workout.
Kelly Studebaker 40:38
So, I would just do it with one arm. And, you know, both my feet are up. And one day last year, I’m like well, why not do it with both my arms and I basically tie my right hand down to the handle, and I can pull back I can row a couple of strokes. But it’s gonna take me a while. But I learned that.
Bill 41:26
So tying it are you putting your hand? Are you kind of wrapping it around the bar and tying it?
Kelly Studebaker 41:35
Yeah, I wrap it around the bar and then I tie it on with the bench strap because that’s what I had in my bag at the time yeah, so it’s really interesting you can do stuff, it just takes a while.
Bill 41:35
You have to be a little bit more creative as to how you go about doing it. I often am fascinated seeing those in Australia, we’ve got the world champion wheelchair tennis player. And I don’t know what happened to the dude. But all I know is I don’t know if he would have been a world champion at anything if he didn’t have the disability that he has. So he kind of just seems to me to be a normal guy, but the fact that he’s got this disability is pushing him further and further than he’s ever been pushed.
Bill 42:03
So he’s in a wheelchair and it doesn’t look like he might be paralyzed. from the waist down. It appears because he’s pretty handy. above the waist, you know, he’s fit, he’s got good arms, he pushes away around his wheelchair around this tennis court like nothing else is the best in the world.
Bill 43:05
I see people who are the best in the world in the Paralympics or other sports. And sometimes I would love to interview them just to wonder to find out like if you didn’t have this disability, do you reckon you would have been that much that motivated and I suppose that’s a good question for you, you know, do you think that you would have been that motivated?
Kelly Studebaker 43:27
Now, probably not. I mean, I probably would have a family with kids and stuff. I’ve never been married, you know. And that’s, I don’t know. That’s just not the way that my life went, so I have other hobbies that I can explore, I guess.
Bill 43:57
Awesome. And they have hobbies. Let me ask you a question about powerlifting and eating when you’re training tell me about how much food you have to hit.
Kelly Studebaker 44:08
I didn’t pick up my eating or whatever, but like, there were people around me that like, you know, they would eat six times a day and stuff like that and I’m like holy mackerel, you know, I eat three times a day, I was eating like, you know, two eggs in the morning and then like, just hearty stuff, you know, but I didn’t go into it.
Kelly Studebaker 44:52
I didn’t go into it thinking like, Oh, I have to eat this and I have to do this. You know, I just kind of It was just like a trial and error. Like sometimes I would get so sore and have to take some time off like a couple of days when I wouldn’t go to the gym just because I would overdo it. I mean, I slept a lot, because my body was just going through changes and wrecked basically.
Kelly Studebaker 45:36
Because when I was competing they would take you through like these 12 or 14-week training cycles and the instructions like do this many reps of this and whatever. Like it was for a normal person, and I’m not a normal person. I’m not a normal person at all. So, when I would do these workouts, and I would do them with the best of my ability when I would come home, I would just crash just because I was so tired. I mean, it’s something that I like to do.
Bill 46:24
Yeah. Do you ever or do you still experience neurological fatigue? Is that something that was part of your life after the stroke?
Kelly Studebaker 46:37
Like brain fog or when I get brain fog, it’s normally because emotional stuff is happening to me. I’m when I’m training. I’m not training right now. But when I’m training like it seems I don’t have brain fog when I’m training. But I’m more physically tired. I don’t know. it’s just something to do.
Bill 47:25
I’m just curious about like how your body reacts to doing that much to putting that much effort. A lot of stroke survivors talk about neurological fatigue and brain fog. However, I love what you said, which is slightly different from what most other people say. And I imagine there’s a lot of people who experience what you just said, which was neurological brain fog, after an emotional, a big emotional experience. That’s interesting. Most people don’t say that.
Post-stroke emotional issues
Kelly Studebaker 47:59
I’ve been through a lot, enough stuff that when I’m challenging myself physically, I feel like it’s mind over matter. Like I can do stuff physically. But emotionally I’m weaker because maybe I haven’t had that much training in it. I know probably.
Bill 48:33
100% You nailed it that’s exactly what people don’t do. They don’t do enough training to deal with emotional issues because it’s a bit scary, you know, and it makes sense. But the thing about when you deal with emotional issues, and you train yourself to go there if it’s hard, is once it you’ve gone to the hard part. It’s better afterward. It’s always better out It’s no different than going to the gym and waking up and being Oh my God, I gotta go to the gym, I gotta go to the gym. And then you make yourself go and then after you’ve been you go, I’m so glad I went. That was amazing, you know?
Bill 49:15
Dealing with emotional issues is very similar at least that’s what I’ve found. And, I know they can be traumatic but to release the trauma. It’s the same as climbing up those stairs, you know, those hundred flights of stairs. There’s only one way to do it. You have to push through the pain threshold to get to the other side. And once you push through, then it becomes nothing.
Bill 49:43
It’s like nah what do you mean? 100 flights of stairs, I’ve done that. It means nothing. You know, it’s not a problem for me. And that’s what it’s like dealing with emotional challenges. And I’ll give you this analogy. Say that it was essential that every year you had to climb 100 flights of stairs. And if you didn’t climb it the next year, you had to do 200. And if you didn’t do those, they were waiting for you the next year, and you had to do 300.
Kelly Studebaker 50:18
Yeah, I would just do 100 every year.
Bill 50:22
Yeah. Right. Because by the time you get to year three, if you’ve got to do 300 flights of stairs, it is such a dramatic issue. It’s such a problem, that it’s really difficult to get to that, right? However, if you chip away at those 100 at a time, then you can still say you’ve done 300 flights of stairs in three years. And that’s a better way to do them.
Bill 50:45
And that’s what emotional trauma is like every time you get traumatized. And you don’t deal with it. It’s waiting there for you next time. The next one happens and the next one and they’re all waiting for that ain’t go away until you deal with all of them. And then when we get midlife in our 40s and before we have our midlife crisis, there are so many of them because we haven’t had the training to deal with it.
Kelly Studebaker 51:10
I’ve been through a lot of midlife crises.
Bill 51:22
Every couple of years is that how often you do your midlife crisis?
Kelly Studebaker 51:27
Yeah, I think so.
Bill 51:33
You’re no different from the other human beings on the planet we’re on this planet, and sometimes things happen to us that we don’t choose. So we’ve just got to become a little braver in tackling them like you tackle your deadlift.
Kelly Studebaker 51:53
I haven’t deadlifted in like six months maybe.
Bill 52:01
Are you looking forward to getting back to it?
Kelly Studebaker 52:08
Right now I’m doing this program. His name is Derek. He’s a military guy. And he’s retired because he has a prosthetic? And he’s a big CrossFit dude. So I’ve been working out like a home workout. And man. It’s intense. Like I couldn’t like my kneecaps were sweating today. Like, my kneecaps were sweating.
Kelly Studebaker 53:09
I couldn’t even finish the workout. I felt like such a wimp. But whenever it happens.
Bill 53:20
Tell me a little bit about the thinking behind your Instagram tag this crip life. What’s behind that?
Kelly Studebaker 53:30
So in America, we have this TV show that was on my so-called life, and I liked that in the 90s. And when I was thinking of a name like it just appeared in my head, I’m like this crip life yeah, I guess it’s like a slogan for people to you know, log on to my page or whatever. And it’s kind of like a play on words like, you know, I’m crippled, you know, but I’m doing cool shit, you know?
Bill 54:25
You are. Thank you so much for being on the podcast and making a massive effort to be on here because the first time we tried to get together it didn’t work, and it seems like you’re in a way better location today. I appreciate getting to know you a little bit and understanding a little bit about what’s behind the person who I’ve got to follow on Instagram keep doing what you’re doing and I’m looking forward to getting to know a little bit more about you and seeing more of what happens in the years to come.
Intro 55:06
To discover how to support your recovery after a stroke go to recoveryafterstroke.com
The post Weight Training After Stroke – Kelly Studebaker appeared first on Recovery After Stroke.
56 min
July 06, 2020 Stroke The Greatest Thing That Happened To Me – Lianne Karla Bigornia
Lianne Karla Bigornia was a registered nurse who then became a call center agent and was working from 9 pm to 4 am. Living an unhealthy lifestyle caused her to have a stroke due to high blood pressure and AVM.
Instagram: www.instagram.com/better_by_stroke?igshid=1hfu20hhv1zkw
Highlights:
00:52 Introduction
04:40 Lianne before the stroke
13:25 Things Lianne had to relearn after stroke
21:11 A skull fragment inside the stomach
28:53 Thinking stroke can never happen
35:38 Post-stroke depression
48:05 Identity after the stroke
59:27 plans
Transcription:
Bill 0:00
Your skull is in your stomach?
Lianne Karla Bigornia 0:03
Yes, doctors are supposed to put the skull inside the stomach, just to make sure that it doesn’t die.
Bill 0:13
Are they gonna put it back one day?
Lianne Karla Bigornia 0:16
Not anymore. They’re supposed to do it three months after the stroke, but then it’s been three years. But my parents and I decided not to put anything into it, I guess. But I just want to make sure that I don’t hit my head or else I die.
Intro 0:46
This is recovery after a stroke. We Bill Gasiamis. Helping you go from where you are to where you’d rather be.
Introduction

Bill 0:52
Bill from recoveryafterstroke.com. This is Episode 105 and my guest today is Lianne Karla Bigornia. Lianne is an AVM stroke survivor. And when I came across her Instagram bio, it wrote, my stroke was the greatest thing that happened to me.
Bill 1:09
This is something that about three years after the first bleed in my brain, due to a ruptured AVM, I was able to say, and I could say this, even though I had deficits and my future health and well-being were somewhat uncertain. Some time ago, I put out a call on Instagram to ask people who felt the same way to connect so that I could interview them and find out if there were any similarities in how they got to be able to say that stroke was the best thing that ever happened to them.
Bill 1:42
Early interviews of the people who related to that statement and agreed to be interviewed revealed that there were similarities in how stroke survivors were able to get to that place where they could say that stroke was the best thing that happened to them, and a pattern began to emerge.
Bill 1:58
The participants demonstrated a growth mindset had an upgrade of emotional intelligence improved their nutrition, began connecting to their internal voice found ways to exercise more, created better sleep habits, connected with their community, and found the purpose for their existence amongst other things.
Bill 2:19
What I’ve learned from these interviews is that there is a way that we can move people from stroke being the worst thing that has ever happened to them to potentially being the best thing that has happened to them, and all they need to know is how.
Bill 2:32
If you want to know how just get in touch, send me a DM on Instagram or Facebook, or just email [email protected]. Now, if you just found this podcast, you might not know that you can also download a full transcript of every episode including this episode from recoveryafterstroke.com.
Bill 2:55
It’s perfect if you like to take notes highlight sections of the discussion that you found interesting or just prefer to read rather than Listen, simply go to recoveryafterstroke.com/episodes, scroll to find the name of the episode you just listened to, click on the link, scroll down until you see the orange download button which says transcript.
Bill 3:19
Click the Download Transcript button. Enter your email address and your download will begin. Also, when you get to the end of this episode, whether you are watching on YouTube or listening on your favorite podcast app, please do me a favor and share this episode in other groups you hang out in this will help someone who is doing it tough at the moment perhaps feel a little better about the journey that they are currently on.
Bill 3:44
Also, if you like this podcast, and you think it makes a massive difference to you and the stroke community, please do me a favor and leave a five-star review on iTunes or wherever you download your podcasts from and now it’s on with the show.
Bill 4:01
Lianne Bigornia Welcome to the podcast.
Lianne Karla Bigornia 4:04
Hello.
Bill 4:06
Hello. Thanks for being on the podcast from the Philippines.
Lianne Karla Bigornia 4:10
Yeah, it’s great. Thank you for this opportunity to finally share my story.
Bill 4:16
Yeah, you’re my very first guest from the Philippines. So I’m really glad to meet somebody from different parts of the world.
Lianne Karla Bigornia 4:26
Oh, that’s great. Thank you. This is awesome.
Bill 4:29
You’re welcome. Lianne, before we get started, can you just tell me a little bit about what happened to you?
Before the stroke
Lianne Karla Bigornia 4:41
Well, before my stroke, I’ve always been super fat. I would just eat whatever I wanted. And I didn’t take care of myself and I also worked as a call center agent so I would work at night. 9 shift, 9 pm to 6 in the morning. And I’ve been doing it for like more than three, four years, I guess. I didn’t know that. I shouldn’t be working like that because I had high blood sugar and high blood pressure, and I didn’t drink my medications as often as I should.
Lianne Karla Bigornia 5:30
And then, I noticed that I would always have a lot of headaches, like maybe every day, but then I didn’t really think a lot about it, but I just, thought just maybe because I didn’t sleep well or you know, something like that. And then one day I was with my friends, and we went to the mall, and we bought some phones.
Lianne Karla Bigornia 6:17
And after that, I was supposed to go home because I was going to go home but then I noticed that we had to renovate our home, so I couldn’t sleep there. So I went to my friend, and because I had a new phone, I always check on the settings and like you know, just check, everything’s fine. So I didn’t sleep well. And then I noticed that I had a crazy headache. It’s not the normal headache I usually have. And then I told my friend that I thought there was something wrong.
Lianne Karla Bigornia 7:13
And the crazy thing was that I couldn’t see from my right side. I couldn’t see anything. And then I wanted to vomit and I vomited twice. And then finally, I told him to call an ambulance and tell them that to call to call my dad. Since my dad is a doctor, he is part of the Emergency Rescue Unit Foundation.
Lianne Karla Bigornia 7:54
So they know us like our family. So they immediately knew that it’s different or like if I say that it’s a call for dad, and it’s immediate, so they called, and I think my dad didn’t answer them the first time. But then the second my dad answered. So they said, Dr. Bigornia, your daughter, there’s something wrong. We’re going to go to the emergency room, which hospital do you want to go to?
Lianne Karla Bigornia 8:32
So they found me in the emergency room, and my cousin my brother, and my dad were there, but I didn’t know what was going on. Because I was going in and out of consciousness. Thank you. After that, we had I think, my mom, and everyone, except my dad was in Cebu everyone else was outside of the outside of city so they immediately arrived. And they were told my dad was told that my blood pressure hit, I think 250.
Lianne Karla Bigornia 9:42
Yeah, and then, the doctor said that all the patients that he had 250 blood pressure would die like they already told him just let you know that all of my patients are in a bad position, but we’ll do whatever. And then actually my dad asked for a priest first before the O.R. It’s a good thing that there was one room that said they could do it.
Lianne Karla Bigornia 10:39
And then I think after that they just thought that I would be in a coma. Like, longer than I should have been. I think I was in a coma for 4 or 6 hours, I think. And then when I woke up, I didn’t understand what was going on. My sister was joking and she just said, Karla, you’ve been asleep for two years. And then I cried. I cried, because two years, I had a boyfriend then.
Lianne Karla Bigornia 11:23
And then she was laughing she said, No, no, no, I was just kidding. But you don’t have hair anymore because they had to remove it. So I didn’t have hair here in the back, except for the front part. So I cried even more because my hair was so long. That was the best part of my body, and my sister said, I didn’t have hair anymore, I cried even more.
Lianne Karla Bigornia 12:11
And so, I didn’t understand what was going on. I just noticed that people were visiting and I didn’t know I was in a hospital. I just kept telling people, hey, you want to eat? You know, what are you doing here? Then they said, we’re here for you do you know what’s going on Karla? I didn’t even know my parent’s names. My sister’s names. I didn’t know anyone.
Lianne Karla Bigornia 12:44
Except for I think I had one friend. A few friends who like I always know their names. But the rest No, so they cried. And I also cried I was just worried. What was going on?
Bill 13:03
Yeah. So how old were you at the time?
Lianne Karla Bigornia 13:05
30.
Bill 13:06
30.
Lianne Karla Bigornia 13:09
I was 30 that’s it that time. That was on November 22, 2016. So, four years, almost four years, I think.
Things Lianne had to relearn after the stroke
Bill 13:25
When you finally realized when you finally got out of the hospital, what did you need to relearn how to do again?
Lianne Karla Bigornia 13:32
Yeah, um, I was in the hospital for three weeks. And then after that, a good thing. I was able to have Christmas with my family and friends. And after that, I immediately had speech therapy. from the hospital until now, or a few months after, I had speech therapy and I was told why I needed to have speech therapy. So I had to go back to ABCs and had to learn ABCs again, numbers, everything. names of people.
Bill 14:27
Did you need to learn how to walk again, or was there any challenges?
Lianne Karla Bigornia 14:38
No, while I was in the hospital. I had physical therapy while there, they let me walk first, slowly, but then they asked, can you still do it? And I said, Yeah, I can do it. So I did it once and then the second time was outside the hospital. And after that, I no longer needed physical therapy. So what I needed was just speech therapy.
Bill 15:23
Did you need to learn how to speak English and Filipino?
Lianne Karla Bigornia 15:29
My first language is English. And everything that I spoke to while in the hospital was all English. So, everyone, I didn’t understand a lot. I didn’t understand what they were saying except for English. So, my friends would text, or like, send me messages when I was in the hospital. I didn’t understand what was going on. Or like what they were saying and my messages? I just like the heart.
Bill 16:10
Yeah, I understand. So when you went home, what was your memory? Like? Did you have some memory problems? Any other issues apart from speech?
Lianne Karla Bigornia 16:29
I didn’t know that I couldn’t sleep. I noticed that one morning. When I woke up, I could see things or places and people and I was on a beach I think, in that dream and then I said It was so weird I could see things so I googled like Google was my best friend the whole time. I googled stroke patients sees things like maybe googled for stroke patient sees things and then I went down, down down, and just checked until I saw the word dream.
Lianne Karla Bigornia 17:49
And then I realized, Oh, I was dreaming. After that I would always write if I dreamt, I would write it down what I dreamt. And what day what time? And how I felt, you know, everything like a scientist. Just to make sure I had everything like even about my speech and things or feelings that I would need to write down. I would all write them down.
Bill 18:31
So what’s the biggest challenge that you have now with regards to the aftermath of the stroke?
Lianne Karla Bigornia 18:38
Now? Not really. Now I’m okay. Although like I’m talking to you right now. And I’m excited. So blah, blah, blah blah. I should calm down and talk to you properly, so that’s my problem. But I don’t think of it as a problem. And also, from my head as a nurse from my head to my, toes. I wrote everything like number one in my head. My skull is still here actually, it’s still soft. My parents decided to keep it soft. And my skull in my stomach because just to make sure that if I have another stroke, the pressure is not that high.
Bill 19:50
So at the moment, you’re missing a part of your skull?
Lianne Karla Bigornia 19:54
Yeah.
Bill 19:55
And where is it?
Lianne Karla Bigornia 19:57
It’s here in my stomach.
Intro 19:59
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 20:24
If this is you, you may be missing out on doing things that could help speed up your recovery. If you find 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, recovery after stroke. Calm down and download the guide. It’s free.
Bill 21:11
Your skull is in your stomach?
A skull fragment inside the stomach
Intro 21:15
Doctors are supposed to put this cell inside the stomach just to make sure that it doesn’t die.
Bill 21:29
Are they gonna put it back one day?
Lianne Karla Bigornia 21:32
Not anymore they’re supposed to do it like three months after the stroke but then it’s been three years but my parents and I decided not to put anything for it I guess. But I just want to make sure that I don’t hit my head or else I die but it’s fine. I’ve gone to concerts with my friends and I don’t need to wear a helmet, but, it’s fine.
Lianne Karla Bigornia 22:13
I just want to make sure that it’s all fine. It’s cool. And then my friends, especially the guys, I would tell them about it. And they always freaked out. Are you sure you’re strong? I asked them a challenge. And then when they try to hold it or touch it, they always freak out.
Bill 22:40
Yeah, amazing what the doctors can do these days. That’s just amazing. And that the skull, the part of your skull is in your stomach. That’s amazing. Do you feel it in your stomach?
Lianne Karla Bigornia 22:55
Not really, at first Yes. But it’s fine. It’s nothing. I don’t feel it anymore.
Bill 23:07
Okay. How big are we talking about? What size is it?
Lianne Karla Bigornia 23:10
It’s like this small.
Lianne Karla Bigornia 23:14
And then after, aside from the head is my hand, it was my hand that everything else is fine. I didn’t have problems with my feet or anything except for my hand. It was this. It was just like this the whole time in the hospital. And then I was talking to my sister one time, and then I said, Tina, that’s her name. Tina, what is this?
Lianne Karla Bigornia 23:46
And then she said, it’s your hand. I said no, this is my hand. I have my hand. She said, no. Karla, you have another hand. I mentioned that I bought a new phone, right? So I put the phone here, and then said, oh it’s for my phone. I thought it was just like a holder or something. And I needed therapy here for my hand.
Bill 24:21
So you didn’t realize that the hand was attached to your body?
Lianne Karla Bigornia 24:25
Yeah, yes, exactly. I didn’t know. I just thought it was like an extra thing. Do you know that something? I can see from this I couldn’t see from this the right side. And I didn’t know that there was a problem. I just I just noticed that there was something wrong with my eye so I asked my sister. I told her Tina, how come there’s something wrong with my eye?
Lianne Karla Bigornia 25:04
And then she told me that this part was a bit blank. So she asked me what could see. Oh, here, here, I can’t see. So everything here is all back then. But now it’s colorful. I can see colors so I can see If people like if someone comes here, I can see that there’s something wrong. like something’s here beside me. Okay, yeah.
Bill 25:39
You can see that there’s something near you.
Lianne Karla Bigornia 25:43
Yes. And this was one of my goals. I’ve never been to a cinema or watched a movie by myself after the stroke. Until last year I think, I put it as my goal, one of my goals was to finally watch a movie by myself and not be anxious because I couldn’t see right for a few years or a few months and then I would be anxious because I couldn’t be sure like, I might hit somebody but after that, I think two years or a year and a half, I was able to go out with my friends all by myself. I didn’t have to ask my sister to come out or go out with me.
Bill 26:48
That’s so good to hear. Right now your hand is yours you know that the hand belongs to you the vision is back. You have some colors. You know, when someone’s around, you can speak well. seems to have settled down a lot. Now you were a nurse. Is that what you were doing?
Lianne Karla Bigornia 27:13
Before that, I was a nurse in the emergency room. That was like three or four years ago oh, five years and then I worked in a call center again.
Bill 27:32
So you weren’t working as a nurse at the time. But as a nurse, you know how important it is to look after your blood pressure?
Lianne Karla Bigornia 27:42
Yes. I know. It was crazy, right? Which is so bad. I know it’s bad. But you know, like when people say that the hardest patient is yourself. So yeah, that’s what happened. And I would always go out with my friends drink smoke because of the stress of work. And I know it’s bad, but I’ve changed everything I no longer smoke and drink.
Bill 28:24
Okay, so you used to smoke as well okay? So you had all the risk factors for a hemorrhagic stroke as a result of high blood pressure.
Lianne Karla Bigornia 28:35
Yes, but my stroke I’m sorry.
Bill 28:37
Go ahead your stroke.
Lianne Karla Bigornia 28:39
My stroke is actually because of the AV malformation I was born with it’s already in my head.
Thinking a stroke can never happen

Bill 28:53
Yeah. So there seem to be a lot of people who have had an AVM on this podcast I had an AVM I didn’t have high blood pressure. I had an AVM that burst and I used to smoke and drink and work too much and all those things. So very similar in the way that you used to live your life. Did you think you were like “It’s not going to happen to me”?
Lianne Karla Bigornia 29:19
Yes, definitely. I did not imagine that that would happen. But actually, you know what? I’m, I don’t know. Have you tried like, you just think that there’s something wrong with my world? I just want to change new I want to renew something. Because at that time, I was praying because of the time when I was in the hospital, before the stroke.
Lianne Karla Bigornia 29:56
I was wondering what my purpose is and what’s going on. Because I was supposed to work again as a nurse, but in a call center. And in that way, I could work in the same company, but then go to America. That was my goal. But then I had a stroke.
Lianne Karla Bigornia 30:29
At first, I did not think of it as something good. I was wondering what was going on. While I was in the hospital while my sister was sleeping, I cried. Because I realized I no longer have a job. I am going to resign or I would never be the same Karla and my boyfriend at that time left me while I was in hospital.
Lianne Karla Bigornia 31:03
So everything was crazy but then, but before that because I was super fat and I was always depressed. I was mad at everybody, and I would just, I would be with my friends or my family, but I wasn’t there. I was always looking for something else, something new something. I wanted to renew everything or reset everything. And then when the stroke happened, and then I had my speech therapist.
Lianne Karla Bigornia 31:47
The craziest thing or the miracle that he told me was Karla, there are only two things you have to do to renew or recover. I said, Okay, what’s that? Two things sing and dance. And I was like, Are you sure? Because singing and dancing are my favorite things. I was supposed to take Theatre Arts. But then I was a nurse. But I realized it was a miracle. The way that God made me recover was through singing and dancing which I love. So yeah, I was oh my gosh, it’s so cool.
Bill 32:41
So you, you do sound like me. I was 37 right and working too many hours. I wasn’t happy. I was always angry and yelling at everybody my friends. I was always wanting something different and something new to happen. I wanted to make massive changes. I didn’t understand how to make those changes. I didn’t have people around me that I could ask questions or get advice from. I didn’t know who they were or how to bring them to me. And I was always stuck in this loop of going and doing things that I didn’t enjoy. I didn’t know what my purpose was I was just working to make money to pay the bills to pay everybody else. And I had no fun no joy in my life.
Lianne Karla Bigornia 33:30
Yeah, exactly. That’s exactly how I felt. And then I had a stroke. And that’s why that’s the best thing that ever happened. And I realized, like, when I was in hospital, right, and while I was crying, I cried, cried, cried, cried, and cried. And then I told myself, Karla, tomorrow, renew and change everything. So I did. I changed everything.
Lianne Karla Bigornia 34:02
When I came home, I would exercise and then I would eat a diet that the doctors told me to take. But then after a few months, I was wondering why I still didn’t lose weight. So I checked YouTube, and my other best friend and I found keto and intermittent fasting. I saw Dr. Eric Berg. So I did keto and intermittent fasting. I lost 82 pounds.
Lianne Karla Bigornia 34:55
But then I also gained it because I had depression and because I would eat my emotions away I gained again but then I realized that I didn’t want to go back to that. And now I’m going back to the beginning and back on keto. I also had an out-of-body experience did you try that?
Post-stroke depression

Bill 35:38
Okay, so before we go there, let me just say 82 pounds is 37 kilograms for people who are in another country that is half my body weight at the moment. That is a massive amount. So congratulations on that. Now I understand why you went back and put on weight because, at the beginning, you’re deciding your health and well-being. And you’re sticking to that and you’re going to get yourself better, but you’re not dealing with emotional challenges that you haven’t dealt with from a long time ago. And a lot of people use food to feel better at that moment when they’re feeling bad.
Bill 36:25
Depression is very common in stroke survivors, because I think the statistic is something like 33% or more of people who experienced stroke will experience depression. So that’s very common and one way that people use food is to overcome those negative feelings at that time. That makes sense why you went there, but the great thing was now you had this tool of how I already lost weight once now you can do it when you deal with your emotional problems and overcome them. And let them free and release them. Then you can go back to this keto or this intermittent fasting diet, which works for you.
Lianne Karla Bigornia 37:15
There’s something else. I don’t know if you felt that or if you tried, but it’s just the past months. I think that I realized that before now. Yeah, a month ago. It’s like I wasn’t in my body. It’s like, I lost the weight, right? I lost the weight. But I was always saying, oh, how come there’s something wrong? It’s like, I’m not in a new I thought it was in my new self. But then I wasn’t me.
Lianne Karla Bigornia 38:00
Like, they’re real, Karla until this month. And then I felt weird. And I was wondering. I looked at the things, my pictures, my videos, and things that make me happy. And then everything that mixed and then that just felt that’s kind of came together.
Bill 38:33
So was it an external thing that happened or did you feel it on an internal of your body?
Lianne Karla Bigornia 38:38
Both. It’s both. It was so weird. It’s like, one day as if ok it’s Karla.
Bill 38:48
So you found your identity? Was it your identity that suddenly became apparent to you?
Lianne Karla Bigornia 38:55
Yes. Like before time I was in the hospital. I just think like when I lost the weight, like, It’s a new Karla. But then where is Karla? Where am I? Like where have I been? Then I looked at my pictures, I looked at my friends and then just, it’s just weird, it’s like it’s not me until this month. And that’s why I wanted to make sure that I talked to you about it. Because I’m not sure if it’s just me or like if other people feel the same way.
Lianne Karla Bigornia 39:39
Wow, other people feel the same way, especially with what you’ve spoken about. Often when I speak to people who say that stroke was the best thing that happened to them. They say almost exactly what you said they talk about. It wasn’t the best thing at the beginning. Then they talk about there was some kind of purpose that needed to happen, they needed to find then they talk about God or some kind of external being or external force in the universe.
Bill 40:15
They also talk about changing their exercise and food. They also talk about dealing with emotional intelligence and they also talk about this identity change that happens they change from being somebody who is not their best self who they change, into who is their best self, and all of the puzzles come together. And they start to see themselves as somebody who has had a great experience and it’s difficult at the time and it caused a lot of problems and some of them can’t walk yet or can’t move their arms and some of them have memory problems or speech problems, but they still think that stroke is the best thing that ever happened. For me, it took about four years as well.
Lianne Karla Bigornia 41:10
Oh, yeah. You mentioned that, so cool.
Bill 41:18
Yeah, to somebody and I didn’t know why I said it or how I came to say it. And then I got really curious, am I the only one saying this? Am I crazy enough to be the only person to say this there must be other people and of course when I asked other people on Instagram, many people said the same thing.
Lianne Karla Bigornia 41:38
Yeah. It’s just so cool, right? Like I don’t know. It’s so awesome. But like, and now I just want to make sure that everything is balanced. Like physically, spiritually, mentally.
Bill 42:02
Yeah. So tell me Karla, how did you deal with the emotional challenges? So did you do some kind of therapy? What was it that helped you overcome those problems?
Lianne Karla Bigornia 42:23
I think it was just a few years ago, I was able to go to a psychologist. I think I did the same thing that she told me to do before. Write your emotions. Write, write, write. And I think that’s what I did. I would write and I just added aside from writing, I would also sing and dance. So I think I just did that.
Bill 43:15
So you started to do a journal about what you were feeling? And when you put that in the journal, what did it do to those emotions? Because if you’re feeling sad or anxious or depressed, putting it in writing, what did that do for you?
Lianne Karla Bigornia 43:32
For me, it’s my way of saying goodbye. I think like, I write the words. Then I would, for example, I would write Dear, blah, blah, blah. And then I wrote something like a, letter to myself five years ago. And I’m writing Dear Karla, do you remember when you. And then after that, I would cry and then let it go. That’s it. I think that’s what I did.
Bill 44:26
That sounds cool. When I coach somebody who’s going through emotional challenges, I try to encourage them to go to where the problems started. So, some people will talk about, you know, I was in a relationship, the relationship broke up, I felt really sad. And then since then, I haven’t been able to have a new relationship again. And usually, it’s because they’ve not dealt with the relationship issue from the past.
Lianne Karla Bigornia 44:55
And going back to the past and checking in with those feelings and emotions. And dealing with them there makes it go away. Like you said, it doesn’t mean that the breakup didn’t happen. It doesn’t mean that the emotion wasn’t difficult. It just means that it’s not anymore. There, and therefore, they had an experience. They dealt with it, and now it’s not affecting them in the future.
Bill 45:22
It sounds like you did that on your own. But was that a tip that you got from your counselor or your psychologist?
Lianne Karla Bigornia 45:29
Yes. yeah. She told me before she told me to just write your emotions, on anything, and always put on the date and the time and why you’re writing this. So I think that helped. And also my friends and my family, of course, but sometimes I would, because I don’t share my feelings. So, I would just keep it to myself until it’s just too much for me. So that’s when I would sing and dance or like, listen to rock. And then I would feel better.
Bill 46:23
Yeah, tell me. How important is it to have a purpose? And what does that mean for you to have a purpose?
Lianne Karla Bigornia 46:32
Oh, that’s awesome. I didn’t have a purpose or didn’t know what my purpose was before. As you said I would just work for the money until the stroke and then I kept asking myself what my purpose and I think this year or a few months that I realized that I think my purpose is to share my story, especially on stroke aphasia, on keto and intermittent fasting, a mix of everything, and depression and you know what you’ve been through.
Lianne Karla Bigornia 47:29
But to just share your story. Anyway, because I’m such a talkative person. I think my purpose is to share because not all stroke patients are in depression. Like you said, some people see stroke as the greatest or the best thing.
Identity after the stroke

Bill 48:05
I understand the people who don’t see it yet. Stroke it’s not an easy thing to deal with. And for a lot of people, it causes a lot of problems. So you have this new purpose, you focus on food and you’re exercising differently. You’ve had this emotional release, where you’ve released a whole bunch of emotional problems that you’ve held on to, and you’ve found your identity. So describe your identity now. So who are you now? And how is that different from who you were before? Like who are you now?
Lianne Karla Bigornia 48:50
I also wrote who is Karla, you know, like, in my core, who am I without the money, not a nurse, no nothing? Like, so who am I? I am someone who has my culture, and then my family everything that my grandparents, my parents, my cousins, and my friends know me as, that’s Carla in my core. But then to add that what things I love that’s in my core right?
Lianne Karla Bigornia 50:02
My culture as a Filipina, family traditions, and what makes me happy. And then love of course faith hope and love. And then after that, but outside that, the things that I’m into like, stargazing, puzzles documentaries. I said that road trips and poetry, you know, I just wrote everything about that and then yeah, and then I would see also this is Karla, this is who I am like whatever happens because before I would always I would be depressed.
Lianne Karla Bigornia 51:07
Aside from that, I would also be anxious. Like, what if someone thinks that I’m, there’s something wrong with me that I can’t see because, you know, because of the stroke, but then because they can’t see that I had a stroke? They can’t, they wouldn’t understand why I can’t see. So I would have to explain again and again, then, or like, I have a stroke.
Lianne Karla Bigornia 51:38
So people say, Are you sure you don’t look like you had a stroke? Like, okay, so that would explain again, what happened. And then I realized that my stroke I didn’t see it as a bad thing. My stroke, as I’m like a super Superman and like Superman now For me, it’s a national. Yeah. Superwoman. Yeah. A super is something additional, instead of a minus.
Bill 52:13
I see what you’re saying. So who you are didn’t change. It never changed. You just reminded yourself and before you weren’t being that person, you knew who you were, but you were being somebody else to make money to have a job to do all these other things. And you forgot who you were and then stroke helped to remind yourself of that.
Lianne Karla Bigornia 52:39
Yes, but before I would always I didn’t. I always wanted to make sure that everyone liked me. Um, but I think like I would always be I was always worried. Like, people might not like me or like, you know, things like that, but then With a stroke now, I would, I wouldn’t I don’t really. It’s bad, but I make like, I don’t care. Okay, I’m I Yeah, I am. Okay, I am fine. I am patient. I mean, I am at peace with who I am. Whatever happens, like, if someone says something bad or something like, what you had a stroke, you know, you mean, like they see stroke as something bad. And I would always say no, actually my stroke is the best thing. And they were wondering why.
Bill 53:43
You know, when did you notice that like what happened? One day stroke wasn’t the best thing and then one day, it was like, how did you notice that?
Lianne Karla Bigornia 53:55
When I was thinking about I will I wrote everything, my story. And then I realized that the way that God just wrote how it started, right the stroke. And then I saw, I like who I was, and then what happened to the stroke? Like what would happen because of the stroke? And then I also realized that the part that the miracle was, um, that the stroke happened. You know, the way that God let it happen.
Lianne Karla Bigornia 54:41
That’s when I realized that Oh, so I was always sad, right? And I was mad at everyone before the stroke and then I was looking for a way to reset and then realized when I had a stroke. And then, I saw that the only two things I needed to recover were seeing and dancing. And then there’s like, also this is God, God’s way of saying, Carla, you wanted to reset. Here it is.
Bill 55:19
I’ll ask you a question. It’s not something that happened. But what if you weren’t able to get back to singing properly if your voice wasn’t perfect? Or dancing properly? What would that mean?
Lianne Karla Bigornia 55:33
Actually when I was in the hospital and then, and then my speech therapist, and my sister said, Karla, okay, sing this song, what’s your favorite song? And then I realized I couldn’t sing it. I couldn’t remember the lyrics. And then I was so sad because I didn’t know how to do it. And then, you know, I was so sad that time when I said this is I have to do it, I have to change it.
Lianne Karla Bigornia 56:11
So every time I try to sing a song. I would try to remember anything about the lyrics. But since I’ve, I’ve always loved learning about the lyrics or the why, why the song is. I would. Yeah, after that I would write the lyrics and then sing. I think that’s the thing that made me stronger. But if I did sing and dance I don’t know. I think I’d be super depressed and worried because like right now I’m talking to I said oh my gosh, yeah.
Bill 57:02
So that’s bothering you that maybe if you didn’t get back to doing that, you wouldn’t have been the best. But do you think there’s another way you can still do singing and dancing? Even if it’s not like before? Is there any other way that you can still have a singer’s identity and a dancer’s identity? If you couldn’t walk? Or if you couldn’t make a beautiful sound with your voice? Can you still be a singer? If you can’t make a beautiful sound with your voice?
Lianne Karla Bigornia 57:37
That’s if I couldn’t know how I didn’t know the lyrics. I would still I can still hum. Although it’s not so nice. But I like let’s say something with my throat. Like I can sing it. Or like, um, yeah, sing anymore. Um, I can sing Listen, I can listen to the song. I guess Yes. So, anything with music I think is the best thing that you need.
Bill 58:08
Fair enough. I understand that it would be difficult if you couldn’t sing and dance, it would be even. But I’ve come across a lot of stroke survivors who aren’t walking yet. And because one of their legs is not able to help them walk at the moment. They still participate even in their wheelchair In, types of events that are similar to dancing or, or being on stage, and they’re still acting and they’re still in the theater.
Lianne Karla Bigornia 58:36
And even if they didn’t get there, the old voice back, they are still able to sing, even if the voice doesn’t sound the same and the singing process, and maybe they’re not singing to create a brand new album or create a brand new record or whatever, but they’re still able to have the experience of singing. So it didn’t go away completely. It’s just different. than what was before.
Bill 59:03
Yeah. What a fascinating story of recovery and stroke. And then this shift from stroke being the worst thing that happened to you to the best thing that happened to you. What do you hope to do in the next few years ahead, what do you hope to achieve in the next few years ahead?
Plans for the future

Lianne Karla Bigornia 59:27
There’s a lot. I have so many goals. I spoke about stroke intermittent fasting and Quito and aphasia. Um, I, aside from finishing my book, I want to also do podcasts, like yours. Yes. And I also wanna I wanted to, I would, I told my friends, I have We have already had it planned.
Lianne Karla Bigornia 1:00:02
But because of this lockdown, you can’t do anything but just sign up, we’re having to have, we’re planning to have a big second stroke, a stroke, like a three-day stroke fast or something like that. They were, you know, all the people who are sharing their diet, like keto and intermittent fasting, low carb, low sugar, and, you know, things like that.
Lianne Karla Bigornia 1:00:40
And then another side besides that, you’d be like gyms, like people from the gyms like we’d have this race, like one for like five people from the race, who are the gym, and then one stroke patient They would it would be like a mix of brain and physical or brain and body. Yeah. And the body with them, of course. And then the brain because I noticed that patients would who were stroke who had a stroke would always think that they would no longer be useless.
Lianne Karla Bigornia 1:01:28
That’s how I thought. And then you would also think that the family just you know, some families would always put that patient put her beside or just in their room, given just food and that’s it. You don’t they don’t take care of her or him. So that’s what I want to do. It’s like a one-on-one weekend. Where spa muscle-up massage and therapy or whatever, and all the patients and also the speech therapists, speech therapists, and speech therapists and physical therapists and everywhere in one place, and all there for the stroke and aphasia.
Bill 1:02:24
Did you also experience aphasia?
Lianne Karla Bigornia 1:02:26
Yes. I had. Yeah, I had to start the ABCs I had to learn ABCs read, and write.
Bill 1:02:35
Awesome. So tell me what’s the book gonna be about?
Lianne Karla Bigornia 1:02:40
My book is gonna be who like before the stroke-like in the middle is gonna be about like my stroke. But before that, like, why I’m like that, like why am I strong? Because of my grandparents, my dad, my mom, my sisters. They’re also pro-strong. I see them as my idols, especially my dad, and my mom, but I’m like, there’s always something that I am, I am who I am, because of them.
Lianne Karla Bigornia 1:03:25
And I made sure that I would read recover because of them, like, um, so that they will not be worried or be depressed for themselves. So yeah. Yeah, that’s what I want for me. And then also the book and also be about keto, intermittent fasting, and how I recovered because that’s what helped. Because of Oh, I’m sorry, I forgot to mention when I had a speech therapist, he had me tested. Like the aphasia was, so, I had a so my score was 77%.
Lianne Karla Bigornia 1:04:21
So I failed, but then eight months later, I hit 97.5%. That was, so it’s 97% and that’s past and I no longer had aphasia. There was like eight months, eight months after the stroke, but then, uh, I think the best thing that helped that was the diet, keto, and intermittent fasting.
Bill 1:04:56
That’s amazing. Karla, thank you so much for being on the podcast and sharing your amazing story. I appreciate you being here. And good luck with your book and everything that it is that you’re going to do.
Lianne Karla Bigornia 1:05:10
Thank you Thank you.
Intro 1:05:11
To discover how to support your recovery after a stroke go to recoveryafterstroke.com
The post Stroke The Greatest Thing That Happened To Me – Lianne Karla Bigornia appeared first on Recovery After Stroke.
1 hr 6 min
June 29, 2020 A New Approach to Occupational Therapy After Stroke – JJ Flentke
JJ Flentke does occupational therapy and is the owner of a Therapy and Wellness Center called Boomerang Therapy Works designed for aging patients and people with neuromuscular disorders which are commonly experienced by people with Parkinson’s Disease and Stroke.
Instagram:
www.instagram.com/boomerangtherapyworks/
Laurie K Mischley:
https://educationismedicine.com/
Highlights:
00:39 Introduction
03:58 Boomerang Therapy Works
13:48 A different kind of approach
23:57 Like a puppet
29:56 The nutrition factor
Transcription:
JJ Flentke 0:00
Parkinson’s disease and dealing with Parkinson’s disease or strokes or any of these brain injuries is you deal with it with exercise and nutrition. And you can’t do one without the other and I do as much as I can I teach a class that has a huge nutrition component. We’re always talking about antioxidants, probiotics, and as many veggie veggie veggie veggies as you can because that’s what helps clean up the brain and decrease the plaquing.
Intro 0:31
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Introduction
Bill 0:38
Bill from recoveryafterstroke.com This is Episode 104 and my guest today is JJ Flentke. JJ is the owner of Boomerang Therapy a physical therapy and Wellness Center designed for aging patients and people with neuromuscular disorders.
Bill 0:56
JJ is a physical therapist who a Master’s degree in public health, health administration, and a doctorate in physical therapy, with an emphasis on the aging process. If you’ve just found this podcast, you might not know that you can now download a full transcript of this episode from recoveryafterstroke.com. It’s perfect if you like to take notes, and highlight sections of the discussion that you found interesting, but just prefer to read rather than listen.
Bill 1:26
Simply go to recoveryafterstroke.com/episodes. Scroll to find the name of the episode you just listened to, click on its link, scroll down until you see the orange download transcript button, click the Download Transcript button, enter your name and email address, and your download will begin.
Bill 1:48
Also when you get to the end of this episode, whether you are watching on YouTube, or listening on your favorite podcast app, please do me a favor and share this episode in other groups. You’re hanging out in, this will help someone that’s doing it tough at the moment perhaps feel a little better about the journey they are on.
Bill 2:05
Also, if you feel this podcast makes a massive difference to you and the stroke community, please do me a favor and give the show a five-star review on iTunes or wherever you download podcasts. Finally, I have put everything I learned about what is important in stroke recovery into a course called 10 Steps to Brain Health for Stroke Survivors.
Bill 2:27
And module one is now available at recoveryafterstroke.com. This is a course that is included as part of my recovery after stroke coaching program that will help you overcome fatigue, reduce anxiety, and support your memory amongst other things.
Bill 2:43
This 10-step program has been created to complement any medical interventions and works in conjunction with any other physical therapies that you are undergoing. So if you’re a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety, this course is for you.
Bill 2:59
If you feel like there is not enough support after you leave the hospital and you are afraid that your recovery will go backward, then this is where I can help. While you are participating in the course, I will coach you and help you gain clarity on where you are currently in your recovery journey.
Bill 3:16
I’ll help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal. Right now anyone interested in learning what recovery, after stroke coaching is about, will get a seven-day free trial to decide if it’s the right fit for you.
Boomerang Therapy Works for stroke survivors
Bill 3:35
The price will be increasing on July 1, 2020, by more than double. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching if you’re listening online, and now it’s on with the show.
Bill 3:52
JJ Flentke. Welcome to the podcast.
JJ Flentke 3:55
Thanks, Bill. Glad to be here. Thanks for having me.
Bill 3:58
I couldn’t resist contacting you because your business being a PT and occupational therapist type of organization is called Boomerang Therapy Works and being an Aussie I automatically related to that.
JJ Flentke 4:13
I think that’s fabulous.
Bill 4:15
These are my people.
JJ Flentke 4:17
Yep, yep, yep, yep, yep. So we named it Boomerang because we’re helping baby boomers boomerang back to their function. But I have been to Australia and so we do have three or four boomerangs, one that I purchased in Australia back in 1988. That hangs on the wall, so I do love my Aussies.
Bill 4:39
Have you ever thrown the boomerang and managed to get it back?
JJ Flentke 4:42
No, but I did buy a left-handed boomerang because I’m left-handed and I tried a lot but I wasn’t very good. I needed someone to teach me I guess.
Bill 4:50
Yeah. I’ve never been able to do it either. So don’t feel bad about that. It’s not something that you can just do. You don’t. It is a skill that I’m sure people have to develop and speaking about skills that people have to develop. What kind of people end up at Boomerang Therapy Works that you guys help?
JJ Flentke 5:10
We help lots of different types of people. It’s interesting, that the practice was built for people with Parkinson’s disease because that was my passion, and still is my passion. But as I have hired more and more clinicians, we have grown to have people dealing with sports injuries. We have people dealing with strokes, we have people dealing with MS.
JJ Flentke 5:33
Of course, I bet just 60% of the people who come here have a movement disorder such as Parkinson’s disease. And then we have your aches and pains. And so we have a couple of therapists that do the ortho thing. There are two of us, three of us who do neuro patients, and one therapist who specializes in pelvic floor rehab.
Bill 5:54
How does somebody become passionate about helping people recover movement, like what happens there I in my wildest dreams would never have considered working in that space ever in my life and didn’t realize the value of it until of course, I needed to learn how to walk again. What happens to people in your field that decide they’re going to work in that space?
JJ Flentke 6:21
That’s a great question. I was an athlete in college. And I think that’s how I got interested in movement. And I was a gymnast. And that’s how I got interested in movement and injuries because, of course, gymnasts get hurt all the time. And so that was my interest. So my clinicians here were also athletes and others had different courses. One was a dancer and the other person was a biologist who wanted to get away from just a cell and work with people.
Bill 6:51
So was there any other interest from any other personal experiences where you came across somebody who was impacted by something like Parkinson’s, or stroke?
JJ Flentke 7:00
Yeah, so when I first started doing therapy, I did all sports medicine and I did a lot of orthopedics. And then I got into balance. And then my sister was diagnosed with Parkinson’s disease. And so that was about 12 or 13 years ago. And so then I switched. And I dove into figuring out what was going on with it. And then the more I met people with Parkinson’s disease, the more I wanted to become a part of what was going on. Because you can function so much better with Parkinson’s disease if you’re empowered by what you can do instead of what you can’t do.
Bill 7:35
Sounds like stroke survivors, a lot of stroke survivors go through that initial process of losing capacity or movement and then getting stuck in Oh my God, I used to be able to do all this kind of stuff. I can’t do it now. My identity has shifted way beyond what I was ready for it was way beyond what I was able to adjust and now I can’t do all the things I used to do before. Who am I?
JJ Flentke 8:01
Yeah, exactly. And with, people with strokes, it’s nice in a way, because the big event happens, and then you start working your way out of it. The problem with Parkinson’s disease is you get this shock and awe with the diagnosis. But you’re not that functionally changed. And so I got to get them out of the mindset that they’re sick and make them realize, look, you can still do this, you can still do this, you can do this. And if we keep doing all these things, you’ll keep this bugger from progressing. And so that’s the shift of everything we do.
Bill 8:35
So your sister was quite young, to experience.
JJ Flentke 8:39
Yeah, she was 50.
Bill 8:42
Right. If she has the early onset Parkinson’s symptoms, what did she start noticing that was different?
JJ Flentke 8:52
She had a tremor in her dominant hand, and she was a bell player, and so she couldn’t keep up with the music and that’s when she started noticing she had a problem. Unfortunately, the first thing that happened was they thought she had a neck injury. So they had to do deck surgery, which was not the problem. But that’s a common thing that I hear in people with Parkinson’s disease less now than 15 or 20 years ago. But then, you know, they finally figured out that was the problem.
Bill 9:23
Wow. It’s interesting, this assumption that people make about even stroke survivors who present with certain symptoms and are told many times that it’s something else. I talk about the lack of awareness of stroke in the community, but there’s also in my opinion, a lack of awareness in the professional community of even doctors and people who deal with stroke survivors because on a Saturday or Friday night, is very common for a stroke survivor to present to hospital with something wrong with them. They are symptoms of stroke that they’re not aware of, but they are mistaken for being drunk. Because it’s a Friday, Saturday night.
JJ Flentke 10:10
Oh, absolutely. And I think there’s also on the other end of the spectrum of misconception of how much to push someone with Parkinson’s with strokes. I find that, you know, when I went to PT school, so I’ve been doing this for 27 years. They said, oh, yes, six months, that’s when you know what you got. That’s a bunch of baloney.
JJ Flentke 10:30
You know, you can keep going and keep going. And we have people who get more function back. And it’s been many years since they had their stroke. But we’re the first clinic that pushes them hard enough for them to get the return. I think that the hardest part for PT is getting enough visits here in the United States, and for people get pushed hard enough to get their function back.
Bill 10:50
We have a family member who experienced a stroke about six months ago and that person has had a difficult time in rehabilitation and the main goal seemed to be to just get him out of there. And the excuse that they kept using them was he’s not recovering quick enough, he’s not meeting the criteria, and therefore we need to get him out of here.
Bill 11:18
And it seemed to be extremely difficult to convince them to keep him in there and to keep persisting with this guy. So eventually, he was with a lot of fuss and difficult negotiations. He was released from therapy with very little progress. He was sent home for his daughter, who is not a personal trainer and doesn’t know anything about rehabilitating somebody who’s recovering from a stroke. She has no experience in that area, to become responsible for helping him recover.
JJ Flentke 11:58
Sorry, my dog, just found me. This is Harper. She’s our clinic dog she found me. She can hear me she came running in here sorry. This is Harper Lee.
Bill 12:15
And this person who is now responsible for her dad, and his therapy results has been able to achieve way more than they did in six months. rehabilitation.
JJ Flentke 12:30
Yeah, that’s the thing. I think. That’s my biggest frustration it’s why we purchased some of the equipment we purchased and all that kind of stuff is basically to get someone so we could push them longer as hard as we can. And I think that’s key. And I think sometimes kids can push their parents better than the clinicians. Can you know what I mean?
Bill 12:52
Yeah, right. So I had a look at your Instagram and that was what prompted me to get in touch so we can have a chat about your approach because your approach seems very different from what I did when I was in therapy almost five years ago now. And my therapy was boring. I could say to you that it was simply boring. And it was therapy done to me, rather than me actively taking part in therapy is how I felt. You guys don’t do that you guys have the person who’s involved in recovery, really recovering. Being involved in their recovery. Have you moved to this type of therapy recently? Or has that been always the way that you guys have done things?
A different kind of approach to occupational therapy after stroke
JJ Flentke 13:48
Oh, so Boomerang is only three years old. So this clinic is relatively young. The reason why I have always been that way is that I have been labeled by clinicians and administrators as having too much fun too much flippancy, and too much joy. I’ve been told all those things. I think it’s ridiculous. So we developed Boomerang and we bring joy here and we bring a healthy atmosphere.
JJ Flentke 14:21
I mean, we give out popsicles when people leave, because they worked hard, right? And when they come in, we’re like, okay, so I want to do this. What do you want to do? What’s the goal? What do you want to be able to do today that you can and then we work on it? So if it’s, I want to be able to go garden we set it up on 3d flooring, do you know what I mean? We put them in a harness we get going.
Bill 14:44
So why do you think it’s important to have fun at therapy?
JJ Flentke 14:50
It drops your cortisol levels so that you have less stress in your life. It helps your neuroplasticity If you make the activity in my world called statiable, which I think is a weird word, it makes it all work better. Yeah, all those things. I agree. You betcha. I don’t understand why medical clinicians aren’t doing more of this is what I don’t understand. If you see the inside of my clinic? Like, if this is we’re in an old warehouse, okay. There are huge windows, we want lights, you know, I mean, like, there are certain things that are part of this, that was strategically planned because you got to bring some hope to everything.
Bill 15:39
I did not expect you and I’m so pleased that you did. I did not expect you to say drops cortisol when you are happy and therefore, how does that impact the muscles and the body people don’t understand why meditation is really important and why being happy and laughing is important. So how does that dropping of cortisol benefit the body?
JJ Flentke 16:03
I think it improves neuroplasticity. So it makes your brain more malleable to change. But cortisol, when you have higher levels of cortisol, you feel pain a lot quicker. And so the lower the cortisol, the better for that goes with Parkinson’s patients, the cortisol is going to not help your movement because you’re already not having enough dopamine, which is another neurotransmitter. So there are lots of reasons that it’s just important to not have things muddying the waters so to speak.
Bill 16:33
Wow. So when you don’t have enough dopamine, even though that gets in the way of your physical rehabilitation?
JJ Flentke 16:41
Oh, yeah, not enough dopamine, that’s what Parkinson’s disease is, which is a lack of dopamine. So if you had too much dopamine, you have schizophrenia and if you have not enough dope, I mean, you have Parkinson’s disease.
Bill 16:52
Wow, schizophrenia is not usually experienced physically. But Parkinson’s is experienced physically.
JJ Flentke 17:02
Right. But to be honest with you Bill, the issues, and then I’m thinking we want to get into this in this podcast, the big issues with Parkinson’s disease aren’t just movement disorders. There are so many non-movement issues with Parkinson’s disease that are far more challenging. I mean, the depression, the apathy, the anxiety, the constipation, you know what I mean? All those things can be almost harder for the person with Parkinson’s disease than the shuffling gait the tremors or the balance issues.
Bill 17:30
Well, that just sounds like a stroke survivor. To me, that doesn’t sound any different.
JJ Flentke 17:34
It’s very similar because these are all problems that happen in the brain. So when people ask what we do we treat people who have a problem in their brain and then we try to make them help them move better. Whether it’s a head injury or a stroke or whatever,
Bill 17:50
yeah, moving better is going to help motility in the gut and it’s going to help them be able to poo better and go to the toilet better. So that’s That’s gonna help there. Because I’m not clinically trained and don’t have medical training in it of any sort. It’s very difficult for me to have these conversations on my own. That’s why I love having them with people like you.
Bill 18:12
But you’re not the usual PT you’re not the usual therapist because the usual people don’t know a thing about cortisol and don’t know a thing about motility issues and how that impacts people in their recovery. And how depression is a bigger issue for some stroke survivors, than the fact that they can’t move their arm and how you need to take an approach that supports them to be less depressed so that you can get better results and when you get better results in helping them move. They become less depressed.
JJ Flentke 18:46
Absolutely. I agree 100%
Bill 18:51
I knew I needed to contact you and I think that what you’re doing is amazing because other people in your industry, are giving you a hard time for bringing joy and happiness and light and fun into therapy. It just goes to show you how far we have to move from old ways of doing things and embrace these new ways of doing things that just make common sense. However, are so embedded in the process and they’re so embedded in theoretical garbage that came from a bygone era. Unfortunately, people who are teaching the young generation are still teaching from a mindset that is 20 30 40 years old.
JJ Flentke 19:38
Yeah, that could very well be true. There are other people like me in the United States. I don’t know. I’m trying to think I don’t. Oh, there is a couple in Australia too. I’ve listened to some great podcasts. I can’t remember their names. I do apologize. But there are other people like me in the United States and we collaborate because we’re getting the word out as best we can. Do you know what I mean? It’s a challenge. I try to help one person at a time versus more of an educational approach. Do you know what I mean? It’s just the way I work best.
Bill 20:12
So I say that I can say real broad general comments like that because that’s what I experienced most of the time. And I’m always talking to people about their recovery and the way that they would prefer to recover. And a lot of the time that’s not taken into consideration. When I was in therapy, there was only one maybe two people who asked me how I wanted to recover and what specifically I wanted to achieve.
Bill 20:39
And, that changed the game for me because I was given one option at the beginning was that I could use the swimming pool to learn how to walk again because then I wasn’t afraid of falling. After all, they didn’t have all the harnesses that you guys have. And that made it safe for me. Then another person who made a massive difference to me asked me, what else I wanted to achieve when I was in outpatient rehab about six months after surgery.
Bill 21:08
And I said to him, I want to be able to run across the road. And so that I can feel safe walking across the road if there’s a car coming, and I need to get off. And that’s not to do a marathon or anything like that. I had some mindset issues around running, thinking that I was not running correctly because the feedback I was getting on my left leg was way different than it used to be. I thought I wasn’t running correctly, and I was afraid of tripping over and falling.
JJ Flentke 21:36
And that’s a great thing. Like we would take people out front, because there’s just run this one street, that’s not too bad. And we would take them across the street because I’ve had people who that’s their thing. I want to be able to cross the street at a light. And I’m afraid I won’t make it in time. Well, let’s go practice and figure it out.
Intro 21:52
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 go through your mind, like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse. Doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 22:16
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions were 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.
JJ Flentke 23:04
Yeah, I we’ve had a spinal cord injury we put in the harness, we played tennis because he wanted to play tennis. Now, he couldn’t develop enough skills to get on the tennis court and be competitive. But we figured out all kinds of ways for him to hold the racket so he could play with his grandson a little bit and it was good. So, you know, there’s all this Yeah, we have a guy right now out there who has an amputation and the things that he’s doing today, I don’t think he expected this close since the amputation.
Bill 23:34
That changes people’s lives and then increases happiness and then increases serotonin and dopamine and increases all those things that decrease cortisol. That makes them happier and gives them a lifestyle that is normal and able to be inclusive and able to be part of life.
JJ Flentke 23:54
Absolutely. I agree. 110% Bill.
Like a puppet

Bill 23:57
Yeah. Now, looking at your Instagram and for people that are watching and listening, there’ll be links to your Instagram so that they can go and see, some of your patients look like puppets because they are attached to this thing that is on the ceiling, and they are on a floor that moves. And that floor makes them look like they’re completely out of control. They look like a puppet.
JJ Flentke 24:25
They do like a puppet.
Bill 24:26
Tell me about those devices and how they have made a big difference in people in their recovery.
JJ Flentke 24:34
So we have four harnesses, and initially, we had a rehab harness like the one on your website, but the one that I had only wrapped around the waist, and I’m not a very big person, so when I put it on, it would just ride up and I hated it. So we went to Home Depot, which is a big hardware store here and we bought roofing harnesses, and they work better.
JJ Flentke 24:57
And so I got in it and Ari you’ll see Ari in a lot of the pictures and he’s like six feet. And we all got him as hard as we could. And we Peter Pan is what we call it, we flew in them to make sure they were safe and they were 10 times better. We just had to get out of our heads a little bit. And so we use those harnesses, whether just because then it frees up our hands and we can do other things and the person feels safe and you know, we can show them that they can do a lot.
JJ Flentke 25:26
Whether the floor is moving like we bought the equipment we bought, we shipped in and this kind of took us all 18 months to make this happen. It was really expensive. And B it came from Milan, Italy. And there isn’t any of this in the United States. There’s Austin then there’s a couple of places and a place in Connecticut. And so the treadmill goes up and down and side to side, and you’re not going to find that anywhere else in the United States.
JJ Flentke 25:54
So putting someone in a harness and letting them walk on so that they can feel like they’re hiking. It’s great. Or they can feel like, you know, this is what’s going to happen if I step over a curb and I lose my balance oh yeah, I caught my balance or, you know, Ari’s good at teaching people how to turn on it, you know, we can be like those, uh, have you seen those videos where people dance on treadmills?
JJ Flentke 26:17
I keep thinking we’re going to make one of those.
Bill 26:22
So what you’re saying is, just giving people the opportunity to know what it’s like to almost lose your balance and then get it. So what you’re doing is you’re giving them a reference point for when they’re out in the real world. This is not something that they’ve never done before you’ve fallen before. This is how you recovered it. And this is how you fell and this is how you protected yourself, etc.
JJ Flentke 26:43
Yeah, yeah, cuz we’re all gonna trip over stuff, right? I mean, I still trip over things, and I’m a perfectly capable 50-year-old right, but you know what? I catch myself.
Bill 26:52
Yeah, I love it. This is great. Because this reference point is what’s going to make a difference for people. It’s knowing that they’ve been here before. And it’s not unfamiliar unless fear creeps in and more courage kicks in, and then they could go through this process and not be afraid of falling and then adjust their gait to walk more cautiously, which then impacts their life overall in the future,
JJ Flentke 27:17
Right and makes their balance worse, correct? That’s good. Yeah. And then getting them back into a sport that they like helps them stay active forever.
Bill 27:27
Yeah, I love it. So do you guys keep statistics or data about the type of results that you get? And how do you use that information to inform your path forward?
JJ Flentke 27:40
So that’s a great question. And we’re kind of in the infancy scale of that, ever since I opened up I’ve done an outcome form on everybody. And so there’s some PT data that we take. The hard thing with PT testing is it’s not always it’s sometimes a little too easy, to be honest with you, for people who are like high-level stroke patients or high-level Parkinson’s patients.
JJ Flentke 28:07
So we’re developing a test. That’s an old football test. One of our clinicians I said was a biologist and a former we’re working on having her look at that data, but we’re still in the infancy of getting it up and going as the COVID thing is slowing us down. Right. So our goal is to get this stuff out there but right now Instagram is the easiest way for us to get this get it out there. We’re not doing the research yet, but it’s definitely on our path.
Bill 28:36
Awesome, now how old is your youngest client, and how old is your oldest client?
JJ Flentke 28:45
Ah, my oldest client, I don’t know. 95-ish will say give or take. And my youngest is I’d say I think he’s 14 and he has a congenital issue and that’s kind of the youngest we go here. We’re not getting pediatric clinicians. Um, so but that’s kind of what we do. I think 14 I think so. Yeah.
Bill 29:09
And the 95-year-old, that’s what are they hoping to achieve?
JJ Flentke 29:17
They’d like to stay out of the assisted living facility.
Bill 29:19
That’s a pretty good motivation.
JJ Flentke 29:23
Yeah, I think it is the one person I’m thinking of that’s their motivation. And so that’s a big deal. For we have a second clinic it’s actually in an assisted living or senior center. Their goal is usually to stay on the independent side and not have to move to the assisted side. Sometimes their goal is to walk down the aisle with their grandson for their wedding, or perhaps it’s making sure that they can get in and out of the car so that they can go out with their daughter every Sunday afternoon for dinner or whatever that may be.
The nutrition factor for stroke recovery

Bill 29:56
Now, I know you guys are not likely to be trained. Professional nutritionists. However, how important is nutrition in recovering a brain after injury or drinking Parkinson’s recovery?
JJ Flentke 30:11
Huge so in the state of Washington so we’re in the state of Washington. We are allowed as physical therapists to discuss nutrition if it’s something you can find on the internet. With that, we talk about nutrition especially when I tell people about Parkinson’s disease and dealing with Parkinson’s disease or strokes or any of these brain injuries if you deal with it with exercise and nutrition.
JJ Flentke 30:40
And you can’t do one without the other and I do as much as I can I teach a class that has a huge nutrition component. We’re always talking about antioxidants, probiotics, as many veggie, veggie, veggie veggie veggies as you can, because that’s what helps clean up the brain and decrease the plaquing all those kinds of things is key.
JJ Flentke 31:00
If you can stay away from red meat, great fish great, you know those kinds of things. In the land of Parkinson’s disease, there’s a lot of controversy over dairy products. So we talked about that. Red wine is better than beer liquor. So if you’re going to partake in that, keeping them to red wine if they can, and if not beer versus whiskey, whatever, you know what I mean, those kinds of things seem to be better.
JJ Flentke 31:26
There’s a phenomenal nutritionist slash Ph.D. up in Seattle who’s done some nice longitudinal studies that look at people with Parkinson’s disease and what have they eaten. And what have they done activity level and what have they done that makes either their disease process go better or get worse? And so we look at those correlations because I like that kind of data. After all, it’s helpful to see what people are doing that helps them or hinders them.
Bill 31:53
Do you know the name of that person?
JJ Flentke 31:55
Yeah, her name is Laurie Mischley. And she’s phenomenal.
Bill 32:05
All right, we’ll look into getting the correct details for that and see if we can just link to it.
JJ Flentke 32:11
Yeah, she’s great.
Bill 32:13
Yeah. So that’s important. That’s, again, one of the things that there seems to be so much happening, especially in the rehab space that I’ve been involved in. And the people that I know that have been to rehab is that there’s no real discussion about nutrition, and you kind of tend to be fed hospital food, especially when you’re in there full time.
JJ Flentke 32:36
Isn’t that crazy? Like what is that about it’s terrible, and it’s not It’s like feeding our kids crap. Why do we do that?
Bill 32:45
Because there is some ridiculous idea that it costs less or it’s easier to do or I don’t know what, but the amount of highly processed carbs and sugar that I was being fed daily while I was in hospital and rehab, I had to ask mom and dad to bring me food because I wasn’t going to eat that stuff. Because it was going to take me longer to recover because I was eating that food, which was going to cost them more because I was going to be in rehab more.
JJ Flentke 33:16
I agree. That’s one of my pet peeves. And what’s funny about that is my business partner and wife revamped a school system in Arizona. So she and then proved on paper that you could do that and do it cheaper. So kills me when I walk into the hospital and they’re feeding people garbage when it’s not necessary.
Bill 33:36
Yeah. I just love your very well-rounded idea of what therapy of a brain is because it’s not getting people into a place and making them move a lot. There’s so much more, and I reckon by through 10 or 15 more questions about other topics that are not related, you would have considered them and that’s kind of how I felt when I saw your Instagram, I kind of felt these guys are a little bit more switched on than your regular therapist.
Bill 34:06
And I think that you’re kind of work is an example for other people to follow about how to go about rehabilitating somebody and how to include the patient in the process the entire time. That’s what we need. We need to be included. not treated as another bloody person who needs to fix something.
JJ Flentke 34:27
You’re just the stroke patient. Come on, you’re just the old stroke patient. That’s your name. No, I hate that stuff. I agree. Thank you very much for noticing.
Bill 34:36
Did it make it better for you to in your work? Did you become a better PT or a better physical therapist? When did you discover that your sister was dealing with Parkinson’s? Did it somehow change the kind of therapist that you were?
JJ Flentke 34:55
I don’t that’s a really tough question. I’m not sure it’s That that was a turning point. As far as that goes, it made me more interested and take my interest in the brain and balance because I was developing a balanced program. And I did it more with PT. And it got me out of being an administrator. So I was running a home health company at the time. So I decided to go back into seeing patients, but I don’t remember how it all played out. Because I’m always doing a million things. So I don’t know. But maybe.
Bill 35:25
Just from a motivational point of view. It’s somebody close to you, who you love who you want to help. And I know that you, really want to help all your clients and your patients, but still, you know that thing to help your sister seems like it’s a really big cause.
JJ Flentke 35:39
Yep. And It was funny in the beginning because she would call me up and say, Have you heard of this? And I’d be checking it out. So it was fun. Yeah. Or sort of fun, you know, in a weird sort of, odd way.
Bill 35:51
It was a different kind of connection, a different purpose to your relationship.
JJ Flentke 35:55
Oh, absolutely. Absolutely.
Bill 35:58
Well, I just love what you do, thank you so much for agreeing to be on the podcast, I appreciate the work that you do, the ideas that you have, and the fact that you’re uniquely doing this. Believe it or not, I know there are a few people in the United States, but the United States is massive and few and far between.
Bill 36:20
And Australia is probably a little bit behind where you guys are as far as what I think needs to be happening and rehabilitation and rehabilitation shouldn’t be boring. It shouldn’t be non-inclusive. It shouldn’t be about just learning how to walk again, it should be about all those other things that we’ve touched on today. So well done for setting an amazing example and for having an awesome practice. If somebody wants to get in touch with you. What’s the best way?
JJ Flentke 36:53
I would say either our phone number which is 360-258-1637 or Send us an email at [email protected].
Bill 37:07
Fabulous JJ thank you for being on the podcast.
Intro 37:10
To discover how to support your recovery after a stroke go to recoveryafterstroke.com
The post A New Approach to Occupational Therapy After Stroke – JJ Flentke appeared first on Recovery After Stroke.
38 min
June 22, 2020 The Fully Recovered Mindset – Maddi Neibanck
When migraine headaches led to a brain scan, the last thing Maddi Neibanck expected to hear was that she had a ticking time bomb in her head in the form of an AVM. Her decision to remove the AVM at age 20 would change her life forever.
Socials: https://www.instagram.com/maddistrokeofluck/
TikTok: @moneyinniebanck
Website: Maddistrokeofluck.com
Highlights:
00:49 Introduction
07:45 Obstacles are Opportunities
14:20 Stroke at a young age
22:22 Finding your passion after stroke
28:44 Fully recovered mindset
38:01 You’re not alone
42:25 Post-stroke recovery progress
Maddi Neibanck 0:00
To me, I’m not sure if you feel the same recovery is all a mindset like it’s, it doesn’t matter so much like what we can or we cannot do. What matters is the attitude we take in like doing it and if we embrace a fully recovered mindset, which is what I write about and like to me that has been a transformative thing is embracing a fully recovered mindset. Like maybe I can’t do everything like how I used to, but I’m going to find different you know, I just need to find different ways to be able to accomplish the tasks that I want to and that’s okay like it’s fine if I’m not able to do everything the same way like I could before.
Intro 0:40
This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.
Introduction

Bill 0:49
Bill from recoveryafterstroke.com. This is Episode 103 and my guest today is Maddi Niebanck. Maddi remembers her first migraine at age seven and when that happened, she never expected that the cause of that headache was a small birth defect called an arteriovenous malformation.
Bill 1:08
A small bundle of faulty blood vessels that can bleed and cause seizures in some people Maddi’s decision to have the faulty arteriovenous malformation removed from her brain would almost kill her and change her life forever. So stay tuned for this episode. It’s another highly inspiring one.
Bill 1:28
When you get to the end of this episode, whether you’re watching on YouTube or listening on your favorite podcast app, please do me a favor and share this episode in other groups you’re hanging out in. This will help someone who is going through a tough time at the moment perhaps feel a little better about the journey they are on.
Bill 1:45
Also, if you feel this podcast makes a massive difference to you and the stroke community, please do me a favor and give the show a five-star review on iTunes or wherever you download your podcasts. Finally, I have recently put everything that I’ve learned about what is important in stroke recovery into a course called 10 Steps to Brain Health for Stroke Survivors, and module one is now available at recoveryafterstroke.com.
Bill 2:11
This is a course that is included as part of my recovery after stroke coaching program that will help you overcome fatigue, reduce anxiety, and support your memory amongst other things. The 10-step program has been created to complement any medical interventions and works in conjunction with any other physical therapies that you are undergoing.
Bill 2:32
So if you’re a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety, this course is for you. If you feel like there is not enough support. After you leave the hospital and you are afraid that your recovery will go backward, then this is where I can help. While you’re participating in this course I will coach you and help you gain clarity on where you currently are in your recovery journey.
Bill 2:56
I’ll help you create a picture of where you would like to be in your recovery 12 months from now. And I will coach you to overcome what’s stopping you from getting to your goal. Right now, for anyone interested in learning what recovery after stroke coaching is all about, you get a seven-day free trial to decide if it’s the right fit for you. The price will be increasing on July 120 20, by more than double.
Bill 3:20
So take advantage of the seven-day free trial now by clicking below if you’re watching on YouTube, or by going to recovery afterstroke.com/coaching if you are listening online, and now it’s on with the show.
Bill 3:33
Maddi Niebanck welcome to the podcast.
Ginger 3:36
Thank you for having me.
Bill 3:38
Hey, Maddie, before we get into the conversation properly, can you tell me a little bit about what happened to you?
Maddi Neibanck 3:44
In May of 2017. Three years ago, After I had just finished university I had a hemorrhagic stroke well, while I was in the hospital, from an AVM, which is an arteriovenous malformation, this malformation of my brain that I knew had ended up causing a stroke.
Maddi Neibanck 4:03
For me what happened was I was in the hospital because I knew that I had this since I’ve had migraines, terrible debilitating migraines since I was a young child. And I decided that I would go in for brain surgery. When I did, they did a pre-operative procedure, which caused a blood clot, which burst ultimately causing me to have a stroke and emergency brain surgery.
Maddi Neibanck 4:22
And so the brain surgery happened. And when I finally woke up from a coma, I was completely paralyzed on the left side of my body. So I’ve had to learn how to do most things that I once took for granted over again, which has been a process I’ll tell you that much.
Bill 4:39
So you had an AVM that you know about, which is very rare because most people don’t know they have an AVM correct? As a result of the headaches that it was causing. You decided to remove the AVM to decrease the headaches and then you had some operative complications, which meant that complication
Maddi Neibanck 4:57
had a stroke, correct? Yes, I did. So he’s lucky in the sense that I knew about the AVM like going into it. But I didn’t think that it would end up causing me to have a stroke and then have to go through all this intensive therapy all over again. So I didn’t think that I don’t think anyone thought that that was going to happen. But honestly, I am just very grateful for my life.
Bill 5:18
Your Instagram handle is maddistrokeofluck. Tell me what’s the thinking behind that?
Maddi Neibanck 5:23
Well, so funny enough. For the first I would say two years, I was not remotely even considering starting an Instagram and like sharing my story and connecting with other people because I was, I guess you could say not in the best headspace so to speak, and kind of didn’t understand like, why did this happen to me like, I don’t want to have to go through this.
Maddi Neibanck 5:47
The last thing I wanted was to share my story with other people and connect with other survivors who’ve gone through something similar. And then it was it wasn’t until like two years after my stroke. So about a year ago, I decided that I think I would go through a lot of rehab like on my arm just to get my walking back my arm back.
Maddi Neibanck 6:05
And now I feel like I’ve learned a lot of things over these past two years that I kind of want to share with other people and then also in turn, learn strategies from other people who have had a stroke. So I was more willing to interact with other members of the brain injury community then so I guess the Instagram to answer your question was started a year ago. And I started that just because I wanted to share my story and I wanted to connect with other people and in turn, learn from others.
Bill 6:38
Yeah, but you could have had an Instagram handle that said, you know, stroke bad had a bad stroke, bad, you know, stroke is terrible. But you chose that stroke of luck, like, you know, you combined the terrible part of stroke with a lucky kind of experience. So like, how did you get to that point where you feel that it’s kind of there’s a luck element to this? Like, what’s that about?
Maddi Neibanck 7:07
So after I had the stroke, I decided I wanted to connect with people who are already within my network, and who I feel are inspiring. And I want to, you know, just take this time where I’m not working a full-time job to learn from other people who I find, you know, and are an example to me. And so, just like maybe five months after the stroke, I reached out to a friend of mine, who is a crazy ultra-marathon runner who has run the world marathon challenge that world records for running like a super crazy guy, whatever I reached out to him like, we need to talk.
Obstacles are Opportunities

Maddi Neibanck 7:45
And so I told him about what happened. And he told me one of the most profound things I think I’ve ever heard, he said, Maddie, obstacles are opportunities. And I just sat there I was like, oh shit, like he’s right obstacles are opportunities.
Maddi Neibanck 8:02
Like you could view what happened almost dying, all that stuff is like a terrible, traumatic experience, which was don’t get me wrong, but at the same time, like, I also am facing, I have an opportunity to view that kind of as I wish, you know, and like if I choose to turn this into something good to view it as an opportunity like that’s on my prerogative.
Maddi Neibanck 8:32
Every single moment of every single day that we live presents us with a unique set of circumstances and choices to make. And we get to decide how we want to live our lives and I guess I just soon after the stroke, I decided like, I want to make this something good for my life. I don’t want to dwell on you know, the bad things that have happened to me like I want to transform this tremendous obstacle into an opportunity for myself. So I try and view my life as a blessing now.
Bill 9:02
That’s a beautiful way to view your life. I mean, it was a blessing before and I agree with you. It’s about mindset, isn’t it? And it’s about choosing what kind of mindset you want to focus on and then going after that mindset.
Bill 9:16
And the more you focus on a mindset and choose a mindset, like a growth mindset, in your case, there’s an amazing book by Carol Dweck that talks about mindset and it talks about the growth mindset. And then it talks about the negative, you know, mindset. And, if you focus on a growth mindset, you’ll find reasons opportunities, and experiences that help support that growth mindset.
Bill 9:42
If you focus on the other one, you’ll get feedback and information and, lots of data for a terrible mindset. And both mindsets are going to use roughly the same amount of energy to bring to fruition it just depends on which one you choose. So if you switch over to a growth mindset, then what can I do? How can I grow from this? What can I learn from this, then you’ll start learning, and you’ll start growing. And you’ll start finding more and more ways to learn and grow and make this a stroke of luck, rather than a stroke of terrible situations, you know.
Ginger 10:21
Right. It’s all in your perspective. Definitely.
Bill 10:25
Now, just to give people an understanding, it’s difficult for me to convince a lot of people about what I just said because when they look at me, it doesn’t look like I had a stroke. I do have deficits and people can see them. So they judge me as a person who got away with it. And there are no real ongoing issues. But you are somebody that does look like they had a stroke. Tell me about the deficits that it gave you.
Maddi Neibanck 10:51
So for me, I mean, I feel very lucky in the sense that the main deficits that I suffered as a result of my stroke are physical, so they are deficits. You can see, I’ve gotten so much better in terms of my walking like, I don’t use a cane anymore. I just look like I have a minor limp and people will ask me, oh, did you have like a sports injury?
Maddi Neibanck 11:11
You know, like, to me, it’s a big deal that people don’t immediately assume that it was like a neurologic thing. And the fact that they think that it was just like, Oh, she hurt her knee, or she hurt her ankle, whatever. And that’s not the case. So I feel like I’m kind of happy that people don’t immediately assume the worst anymore, but I do.
Maddi Neibanck 11:30
I do walk with them. I don’t use a cane and I don’t need assistance to walk, but it’s just like a little bit of a limp, and then my left arm and my left hand don’t work as well as they used to. So I can do some things with my hands. Like, unfortunately, I was a left-handed person. I am a left-handed person. For me not having my left hand is like really challenging, but I’m doing More exercises and getting to a point where I can use my hand to help with some things like opening doors and jars.
Maddi Neibanck 12:07
And, you know, I’ll practice like trying to write my name with like an adaptive pen or eating with an adaptive fork. So I do, like try and do a lot of things on another main challenge that I guess, that I’ve had, since the stroke for me has been my vision I’ve had bad like, from as a result of the stroke, I lost the majority of the peripheral vision on my left side.
Maddi Neibanck 12:33
So my field of vision is very small. And, so basically, if I’m not looking straight at something, I don’t see it, you know what I’m saying? And so like, that was a weird adjustment for me to make like realizing, oh, a lot of times in therapy or my parents would say like, oh, Maddie like there’s a person over there like you just ran into them like, did you not see them?
Maddi Neibanck 12:55
I’d be like, no, I didn’t see a person there obviously like, what do you do mean? And my mom would always yell at me like, you have to turn your head. A whole world is happening on that left side that you’re just not seeing because you’re not turning your head. And so that was like, probably one of the biggest adjustments for me is having to realize like there is all this stuff going on.
Maddi Neibanck 13:18
And I have to remember like, okay, turn your head and look over there because just because you’re not looking doesn’t mean that there isn’t stuff over there so that, like, apart from the physical like my visual deficits have been huge. And I’ve been to have struggled with double vision. So I had eye surgery to work on that.
Bill 13:40
Has that rectified the double vision?
Ginger 13:43
Yes, I had to wear it after a stroke. I had to wear prism glasses because I had double vision in my eyes. And then like, it was two months, three months, two months ago, I had a surgery which basically was meant to correct the alignment of my eyes and then also fix the double vision and it’s helped tremendously so while I still have a bit of the like the residual a double vision I see much much better and I’m I can work contact. So that’s been a huge advancement.
Bill 14:18
How old were you when you had a stroke?
Stroke at a young age

Ginger 14:20
I was 22. So it was a week after I had graduated from university.
Bill 14:26
So for 22 years, everything has been going relatively well except for these migraines that how terrible where these migraines.
Ginger 14:34
Oh, horrendous, like debilitating. It started when I was I can vividly remember I was seven years old. I was in my classroom with my teacher and all of a sudden I got this hitting pain in my head. I was like, I have to go to the nurse and from then it just started like and I would every month or so I would get at least one migraine, debilitating had to leave school, go home, and just sleep because no medicine helped it.
Maddi Neibanck 15:02
And eventually, it culminated in a migraine when I was 14 years old. That said, 24 days, so I had to go to the ER and finally, the doctors were like, okay, you need an MRI, like, let’s get this checked out and see if something is going on. So we did the MRI, and then that’s when we discovered that I have this arteriovenous malformation in my right occipital lobe, and they didn’t the doctors didn’t say like, okay, that’s causing the migraines. They just said we need to keep an eye on this. Like maybe you should seek some opinions of a brain surgeon and see if you need to do something about this. And then so that’s what I did.
Bill 15:39
So you took quite several years to get to that point where you decided to have surgery, did the migraines persist, and as a result of that, you got to the point of saying it’s most likely this AVM, we should do something about it.
Maddi Neibanck 15:53
So actually, I decided not because of the migraines per se because like I said the doctors couldn’t say off the bat like, okay, you’re getting these terrible migraines because of this thing in your brain. Like, I guess there was no way to know that. But they did all of the brain surgeons that I consulted with, and they all told me that knowing that you have this big AVM in your brain with each year that you live is an increased chance of bleeding and rupturing causing a stroke and you dying.
Maddi Neibanck 16:26
So, I mean, yeah, whatever. I was, like 20 years old when I finally decided that I wanted brain surgery, but basically, that was because I didn’t like the idea of having this ticking time bomb in my brain that could explode and like maybe I could die like, okay, who knows, maybe it wouldn’t do anything but like, maybe it would do I want to run that risk. And so that’s why I ultimately decided that I was going to have surgery.
Bill 16:51
So I had an AVM in my head and I didn’t know that I had an AVM in my head.
Maddi Neibanck 16:56
You didn’t know that you had yours?
Bill 16:58
No, and most stroke survivors who have had an AVM ruptured didn’t know that they had one. What happened was at 37. It just decided to bleed and up until then, I hadn’t had migraines. I hadn’t had any reason to believe
Ginger 17:12
You had nothing to think about it.
Bill 17:14
Nothing there is to believe there was anything wrong. So I just went on with life as normal and then and then it bled and a lot of the people I’ve interviewed have had AVMs there’s been so many of them that have been seriously challenged by the AVM.
Bill 17:33
And of course, I’m only talking to the ones that have survived. So I don’t know if there are a lot of other people out there who have had an AVM bleed and as a result of that, they haven’t survived. I’m sure it’s the case but it is a big deal for a 20-year-old to decide that. Did it solve the issue with the migraines Have they gone away since the surgery?
Ginger 17:55
I am very very lucky in the sense that it did. I haven’t had a minor since like, the migraine and I guess that happened when I had the stroke. So, in three years I have not had a migraine, which leads me to believe that the migraines are caused by the AVM, which I’m lucky enough that it was successfully removed in the emergency brain surgery. So I don’t have that in my brain anymore. I just have a bunch of problems because of the surgery, but I don’t have the AVM and I don’t have migraines.
Bill 18:32
Yeah, so the reality is that the AVM can’t bleed anymore, I can’t catch you out so that is a very important thing. And it’s something that you’ve resolved and that won’t ever happen again. So that is a great thing. And I know this is gonna sound a bit odd or whatever, but at 22 with some deficits, you’ve got a long time to heal and recover from those and work away to get used to how your body now works.
Bill 19:05
So you’ve got a bright future ahead of you. And that’s a really good thing, even though you’ve got these challenges. So I suppose, in a way, I think you did the right thing. You made the right decision to remove the ABM. How do you feel about that? Do you feel like it was the right decision?
Ginger 19:25
I do. So sometimes I think like, okay, if I had decided not to get this removed, like, okay, maybe I would have been fine. Like I would have gone on to do the job that I thought I was going to do and moved after I graduated, whatever, and like, maybe everything would have been fine. Maybe I wouldn’t have had a stroke, but maybe 20 30 40 50 years down the line is when it finally would have ruptured and then I would have, I think less of a chance of recovering as well as I have.
Bill 19:56
Yeah. So what were your plans before the stroke, what were you going to do with your life?
Maddi Neibanck 20:04
I had, like I said, I had just graduated college right before the stroke and I had a job all lined up, I was going to move up. I went to college in Washington, DC, I went to Georgetown University. And I was going to after I graduated get the brain surgery, and then move up to Boston, Massachusetts, and I had a job all lined up there that I was pretty excited about.
Maddi Neibanck 20:28
Ultimately, I wasn’t able to do that. After the stroke, I had to go through intense rehab could not work, and obviously could not move to live on my own. And so I had to reevaluate. I didn’t work for a while. That’s when I ended up writing my first book. And then actually a year and a month ago, I started working full time, so that was like a big step forward for me.
Bill 20:58
What did you study?
Ginger 21:02
I’d double major in Spanish and justice and peace studies with a certificate in entrepreneurship.
Bill 21:09
And the job that you had lined up what kind of work was that?
Maddi Neibanck 21:12
It was in sales.
Bill 21:14
So you couldn’t go to work. And a couple of years later, you’ve done the recovery, and you’re feeling better. So now you are back at work for the first time. What kind of work are you doing now?
Maddi Neibanck 21:25
Yeah, so I started working, as I said a year ago, full-time, and I work in reinsurance. reinsurance is insurance for insurance companies. And so I’m in the underwriting side of that, and I like it for me, what’s cool thing about it is, that it’s a company that is based in Madrid. So it’s a Spanish company. And so my boss is Spanish, so I get to use the language skills I studied at a university daily, which is cool. And like the work gets really good, complex, but good.
Bill 21:59
Yeah. That is great. That’s good that you found your feet in an area where there was some interest. Also, you’ve been busy writing books now. How does a 20-year-old have the focus to write a book, but also, you’re recovering from a stroke? So where do you find the time to write a book? This is cool.
Finding your passion after a stroke

Ginger 22:22
So I’m going to be honest, like, after having a stroke. I had, I told you that I had a bunch of conversations with people who I found to be an inspiration in my life or like people within my network, who I really admired and looked up to. I had one of these conversations, maybe like, three, or four months after I had the stroke with my favorite college professor from Georgetown.
Maddi Neibanck 22:47
I told him what happened, whatever. So we knew about the stroke and he told me, Maddi, you have a very unique opportunity here talking about turning obstacles into opportunities. He said to take this time where you’re not working full time like you thought you would be, you’re focusing on your recovery. Take this time, the free time, you have to learn about something that you’re passionate about. And you know, to turn that into something productive, like writing a book would be the way to do that.
Maddi Neibanck 23:17
And so I did a bunch of brainstorming, and I decided, okay, what are some things that I’m interested in that I would like to explore in more depth, but that I’ve never really had the time to? And I just did that for me was fashion. And so my first book I wrote after my stroke, like, it came out in 2018. So a little bit over a year after the stroke a year and a half per stroke.
Maddi Neibanck 23:40
I interviewed people within the fashion industry, did research on my own, and then eventually wrote, and put all of my findings and interviews into a book, which I have right here. Can you see this Fashion Forward? Today’s culture shapes tomorrow’s fashion. So this is my first book. And the cool thing I think about it is that because I’ve read it after my stroke, I was obviously in that mindset of like, I’m using this book as a tool in my recovery.
Maddi Neibanck 24:11
Like, for me the act of setting up interviews, talking to people planning out my schedule, like, okay, I’m going to write on these days of the week, like the whole thing of planning, executing, interviewing, and writing was like, therapy to me. It’s like a form of cognitive therapy. So I felt, you know, grateful to have been told by my professor like, oh, you should use this time to do something productive and decided to write a book.
Maddi Neibanck 24:39
Honestly, writing a book has been the best form of therapy because it’s helped me in terms of getting back my, ability to plan to organize my day to all of the skills that kind of affected my attention to detail, everything from a cognitive sense that was affected like I got to work on and it didn’t feel like therapy because it was something I was interested in.
Bill 25:02
Yeah, man, that is awesome. I mean, I know exactly what you mean about having something to focus on. That’s why I started the podcast, it meant that I connected with people who were like me, it meant that I started to learn from them, and it meant that I was sharing that information other people will learn. It means so much and it meant that I had something to go back to when I felt up to it and I had energy, it inspired me to keep going and to be a little better at managing my time to bring people on to help me because I can’t do this podcast on my own It takes a lot of time and therefore a lot of money.
Bill 25:39
And it interferes with other things that I do. If I let it can take over my entire life, but it’s caused me to find balance. So the podcast is done in my downtime. It’s done from home, so I don’t have to go anywhere to do it. All the editing is done online, you know, there isn’t anything that I have to do other than go into my room.
Bill 26:09
And therefore it minimizes the amount of effort that I have to put into it. So it’s been fascinating for me to observe myself, eight years down the track, and see how this podcast has formed. And now we’re beyond the hundred episodes. So it’s amazing, you know, so I’m quite proud of it as well. Now, the one thing you don’t have, though, and forgive me for saying that is you don’t have a lot of creativity regarding the book titles.
Intro 26:35
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 recover? What things should I avoid in case I make matters worse, doctors will explain things, but obviously, because you’ve never had a stroke before.
Intro 26:37
You probably do. Don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you find 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 27:21
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 27:49
Your new book is called Fast Forward. The previous one was called Fashion Forward this one is called Fast Forward.
Ginger 28:00
It’s a play on words, you get it because the first one is Fashion Forward. And this one is Fast Forward. Fast Forward a couple of years and see, like, for me, it’s like and see what I’m doing now, like when I wrote my first book to now, which is like, what a year and a half after that, look how much more I’ve been able to so it’s in a way like my second book, fast forward, the fully recovered mindset is in the part memoir of my journey of the past three years now I’ve recovered, and you know, since I work on and, but more importantly than, like, how much I’ve recovered is about, like you mentioned, the mindset that I feel like helped me more so than like, any physical improvements I’ve made.
Fully recovered mindset
Maddi Neibanck 28:44
Because to me, I’m not sure if you feel the same. Recovery is all a mindset like it’s, it doesn’t matter so much like what we can or we cannot do. What matters is the attitude we take in doing it and if we embrace a fully recovered mindset, which is what I write about. And like, to me that has been a transformative thing embracing this fully recovered mindset. Like, maybe I can’t do everything like how I used to, but I’m going to find different, you know, I just need to find different ways to be able to accomplish the tasks that I want to and that’s okay. It’s fine if I’m not able to do everything the same way as I could before.
Bill 28:50
So the fully recovered mindset is an awesome way to approach life, however, that suggests that maybe there was something wrong with your mindset beforehand. Now, I’m not saying there was and when I say wrong, I’m not saying that there is such a thing as a wrong mindset. It’s just a mindset that either serves us or doesn’t. Tell me about your mindset before the stroke. What was that like?
Ginger 29:48
Right. So I mean, to be honest, I’ve always I would say, and I think people who know me would say that I’ve always been like a pretty positive person. I see the glass is half full kind of thing. But I just feel like that since I had the stroke like that, has amplified to an extent if you know what I mean, like, I feel like when I had the stroke, like there was no option for me to be negative and dwell on what it happened to me like, yes, that could have happened. But I decided early on that I wanted to turn this obstacle into an opportunity. I wanted to see what I could do. And then yes, as you mentioned, embrace this fully recovered mindset and see kind of what kinds of things I could accomplish if I worked at it.
Bill 30:48
Yeah, that’s a great way to go about things. Now what is a fully recovered mindset to you I’ll give you my version of what I think that is based on not knowing exactly what’s in the pages of your book. haven’t read it. We’re too far away for me to grab a copy right now. But I’m curious about, for me, a fully recovered mindset is that I can tell somebody, that asks me, how are you? How are you going? Regarding my stroke, my brain surgery, my learning how to walk again, I can say to somebody, I’m fully healed, I’m well, I’m healthier than I’ve ever been.
Bill 31:23
However, I still have left-side numbness when I get tired, I start to lose my balance a little bit. I have fatigue that kicks in, at certain points of the day sometimes, you know, at around 4 pm sometimes after that, if I don’t sleep well, it means I have a terrible day the next day. The one side of my body is numb and colder and has less sensation. So even amongst all of that drama and challenge and issues, I still feel like I’m fully healed. I’m healthier than ever I’m fully recovered. Is that kind of how you see yourself?
Maddi Neibanck 32:05
It is. So actually the reason that my book is titled Fast Forward, the fully recovered mindset is because I had a conversation with another stroke survivor. Her name is Ella. She’s a habit coach and she had a stroke when she was young. She said that for years after the stroke, doctors would ask her, okay, how do you feel how recovered do you feel? And she would say, like, Oh, I’m 97 98% recovered, but like, I’ll never be 100% back to like, how it was before.
Maddi Neibanck 32:41
And then she told me that she realized like, what am I saying, like, why am I saying to people that I’m 98 99 you know, percent recovered when like, I am still living like a very full life. I’m doing maybe I’m not doing it like how I used to, but I’m doing a lot of things that I thought maybe I wouldn’t be able to do again. And so for me that is the embodiment of the fully recovered mindset is realizing you, maybe you can’t do everything like you used to. But if that doesn’t stop you from living your life to the fullest and still getting a lot out of your life, then to me that’s fully recovered.
Bill 33:29
Yeah, I completely agree. I love it. The book took how long to write how long does it take to write a book? And how many pages is it?
Ginger 33:39
So my first book, Fashion Forward, the fully recovered mindset took me nine months. And that is let me just look and tell you, I think it’s 213 pages. My second book, Fast Forward, is about the fully recovered mindset. took me like 10 months. And that’s I think, 222 pages.
Bill 34:08
What’s it like to get your baby that, you know is in pages? Just words all over the place? What’s it like to finally get that copy? You know, the fresh box, the fresh copy in your hands?
Ginger 34:21
Oh, it’s amazing. It’s so nice to see like to have this in my hand and hold and be like, I spent 10 months of my life working on this and like, now it’s a real, it’s a real thing like this happened. And now I want to just get it out to the world and have a lot of people know about it.
Bill 34:41
Yeah. Can you jump to the index and just read to me what a couple of the chapters are about?
Ginger 34:48
Of course. Yeah. So fast forward, let me see. We have the first chapters, obstacles, or opportunities. So talking to chapters called shit happens and then there’s a couple chapters about changing your priorities. So there’s a shift that happens, which is about my shift in mentality from being down on myself, why did this happen to me too? How can I turn this obstacle into an opportunity? And then there’s a chapter, I go into a little bit about, like the various deficits that I had as a result, so there’s, it’s not just for wrinkles, which is about me getting Botox and how the Botox helps with the spasticity.
Maddi Neibanck 35:37
There’s Whack a Mole, which I kind of compare like that game, whack a Mole to like the vision exercises that I would have to do so that’s a fun one. I talk about having positive vibes. There’s a whole section on positive vibes only because when I was in inpatient rehab, I met another fellow patient, this man who would always say like positive vibes only. And so I decided like, Oh, that’s a cool little thing to say. And I had a T-shirt that said positive vibes only. And always reminded me of him. But yeah, there’s a bunch of different chapters like on the various, I guess you could say struggles that I face, like as a result of the stroke.
Bill 36:29
Is it for I know, it’s for stroke survivors, but what kind of person is going to appreciate it’s somebody that needs a mind shift, mindset? mindset shift, what kind of person is going to appreciate that book?
Ginger 36:42
Honestly, so yes, I wrote this book with fellow stroke survivors, and brain injury survivors in mind. However, I think that anyone could stand to benefit from the lessons and the insights that are in there because I mean, especially now, considering we are all collectively living through a global pandemic. Like, I think that mindset is super important, and finding ways to shift your perspective to appreciate, like the little things in our lives because okay, yes, lots of things are closed right now.
Maddi Neibanck 37:16
Like, we can’t necessarily go out to a restaurant or, you know, to a bar, do any of that kind of stuff like we used to. But, you know, what are the things that we can do in our lives that make us happy and give us an appreciation for the things that we do have? So I do think that honestly, anyone could benefit from this stuff.
Bill 37:43
Yeah. You know, one of the numbers that you’ve got on the back cover is that one of the statistics is that 795,000 people in the United States have a stroke every single year.
Maddi Neibanck 37:58
Crazy, right?
You’re not alone

Bill 37:59
That is just staggering to listen to that, to read that, and to hear myself say that shocking, yeah, it’s shocking. And then the other thing about that is, those of us who are around have had a stroke or listening to this episode and watching on YouTube, you’re not alone, some so many people are like you, that you can connect to and that you can learn from and relate to, and you can feel like, you know, there is a way forward, you can see people that are 20 30 and 40 years post-stroke, and you can also meet people that are a few months post-stroke.
Bill 38:40
So it’s a great way to give you the very broad range of what stroke looks like so that if you’re feeling bad about your current situation, you can adapt and you can change and you can shift your mindset.
Maddi Neibanck 38:55
Exactly and you’re not alone.
Bill 38:59
Yeah, that’s important and now you’re not alone you can also connect on social media and use social media for something amazing rather than just saying you know what car the person down the road purchased or you know what their new pair of shoes look like any of that stuff you can use social media for something positive and in a good way, in a great way and we’ve got that going on Instagram, haven’t we? The hashtag stroke survivor, the hashtag stroke recovery the hashtag AVM survivor, brain surgery survivor, all those bring people up from around the world.
Maddi Neibanck 39:38
To unite. Yeah, no, it’s amazing. It’s great. This community that there is social media on Instagram. It’s quite amazing.
Bill 39:53
Yeah, so tell me this book is called Fast Forward. Is there a third book?
Maddi Neibanck 39:58
On the horizon? I mean, who knows? It’s it’s looking like it’s starting to be a series. However, I’m not sure what other way I could tie in the forward idea. fashion-forward, fast-forward. I don’t know.
Bill 40:17
I’m sure you’ll come up with something. Did you notice that the first three letters of both titles are FAS?
Ginger 40:25
I didn’t think about that. But you’re right. Yes. Okay.
Bill 40:29
So maybe there’s another word that says what you wanted to say that starts with FAS. And then you can go with that.
Maddi Neibanck 40:36
Maybe I have to think about that. I’m not currently starting to write another book. But who knows, maybe in like, a couple of years, I would revisit and add another one. For me, it’s like a cool way to look back like, on my journey, because it forces me to kind of reflect on what’s like this first, this one, fast forward. About the first three years of my recovery, like, who knows, three years from now, when I’m six years down the line.
Maddi Neibanck 41:08
I think it’s really important to reflect, as we’re living through something traumatic or just, like challenging. And so I try and journal every couple of days about, like things that have happened in my life. And I just, I don’t know, I think it’s very important. Writing these two books has forced me to take the time to reflect on how I feel about how the past couple of years have gone and like things I’ve accomplished in that time.
Bill 41:38
Yeah, you do get a sense of that. There are a lot of people who post photos before and after a stroke, and then they post photos along the line, how their face has changed, their muscles have developed further right, or they’re walking better. And I didn’t think about doing that kind of stuff. And I wish I had somebody to show me in my recovery how I was improving.
Bill 42:01
I had, I had a lot of issues with speech memory, and cognitive processes. So it would have been good to be able to reflect on that. And the only person who ever said that to me was my, that I was improving was my counselor at the time. My psychologist, said to me, boy, I’ve noticed how much better you’re speaking certain amounts of months, months down the track.
Post-stroke recovery progress
Bill 42:25
So if somebody is out there, and they want to be able to reflect to see how far they’ve come, ask a friend ask somebody who could record you, and then play it back to you in a few months so you can get a bit of a boost about you to know, that you are improving and you’re not just focusing on what you can’t do, focusing on what you’re getting back, focusing on what you can do.
Maddi Neibanck 42:49
Exactly, because it’s hard to I think when you’re living the day-to-day, of going through your recovery and stuff, you don’t necessarily see the improvements as they’re happening. So that’s why when you ask other people who haven’t seen you in maybe a couple of months like, or if you take videos that like, I like to take a lot of videos and pictures of myself, so I can like to look back on those and see like, oh look in this video if you compare this video I took last week when I took like three years ago, like, my walking is way better.
Maddi Neibanck 43:21
And so that like, I’ll look back on old videos and I’ll photos when, like when I’m feeling down or whatever, and then it will remind me and put things into perspective like, okay, I think that I’m like plateauing that I’m not making any progress. However, I’m looking at these videos and I’m like, just remember where you were like a year ago, two years ago.
Maddi Neibanck 43:45
Just think about that. Like, okay, Maddi, you used to not even be able to sit in a wheelchair. And then you walk with a cane-like and look at you now like you’re not even you don’t even need a cane to walk. You don’t even need these Have someone there. So I think that recording yourself or talking to people who haven’t seen you in a while helps the things into perspective.
Bill 44:11
I love your zest for life. I love the way you go about things. As somebody who was formerly 22 years old, I think I was such a non-switched-on person as in I was just going about life, just being a normal 22-year-old but a little less mindful of anything that was happening around me. I certainly didn’t follow my passions. I lived in fear, I was always afraid of failing and what people would say if I failed.
Bill 44:43
And it took me a long time to overcome that, you know, I had to have a stroke and start to take your attitude, but I had to take that 37 onwards and kind of miss out that I’ve missed that opportunity to push myself early on now. I’m not regretting that because I can reflect on that now and say, well, how much have I grown? And look how different I am now. And look how many things I’m doing that I never was before. Right? So. I think as a 46-year-old now, almost 46 years old, I just really want to say, that for 22 you are an amazing person.
Maddi Neibanck 45:22
I’m 25 now.
Bill 45:24
Oh, yeah, right, that’s right for 25.
Maddi Neibanck 45:26
I’m 22 and a half, and I’m 25 so not 22 anymore.
Bill 45:32
But even for a 22-year-old, who’s now 25 you are so well placed to become an amazing version of yourself and make yourself have a fulfilled life, that you’re going to also impact others positively. And I think that is such a great thing and you should be commended. And you should feel very, very blessed to be the kind of person that you are even more so than I already know. That you feel blessed you know?
Maddi Neibanck 46:02
Thank you. Thank you That’s very kind.
Bill 46:06
So with that in mind if somebody wants to connect with you so they can get some of your call inspiration buy your books. Just reach out and touch base with you. How would they go about that? What’s the best way?
Maddi Neibanck 46:22
Okay, so first and foremost, yes, I would love to connect with anyone and ever and I’m always looking to connect with especially other stroke and brain injury survivors. So I would love for anyone to reach out you can find me on Instagram I am Maddi stroke of luck. I’m sure that you can put that in the podcast episode.
Maddi Neibanck 46:42
And on the like in my Instagram bio, I have the link to buy my book. So if people are looking for someone to read my story and also okay if you also have physical deficits like I do in my Book, at the very end of my book, there’s a bunch of exercises that I do that have helped me a lot. So I put both exercises for my leg and arm and like the ones that have worked for me and that I felt have helped a lot. So if you have physical deficits, like maybe you would be interested in reading it in ebook and paperback.
Bill 47:25
Excellent, I will have all those links in the show notes. So anyone who wants to get those links, just go to recoveryafterstroke.com and you’ll see Maddi’s episode from there, I wish you all the best, and have an amazing, continued, and ongoing recovery. And please reach out anytime if there’s anything I can do for you.
Maddi Neibanck 47:51
Yes, no. And likewise, thank you so so much for having me. This is awesome.
Intro 47:59
Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com
The post The Fully Recovered Mindset – Maddi Neibanck appeared first on Recovery After Stroke.
49 min