Jack Breitenstein is recovering from a ruptured AVM, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke.
05:27 Arteriovenous malformation
13:01 Speech improvements
20:38 Courage to be on the podcast
28:05 The Pitch
41:31 Being treated differently
Some people who I’ve contacted on the podcast who had aphasia were not interested in coming onto the podcast because they couldn’t complete the conversation in the way that they felt comfortable. I sent you a message. Do you want to be on the podcast? And you said yes. straightaway. What makes you say yes.
Well, I get an opportunity for you and me and a chance to be on a podcast.
So it’s an opportunity for you and me to meet and it’s a good chance to be on a podcast yeah?
Yeah. and challenging.
And it’s challenging you?
This is the recovery after stroke podcast. with Bill Gasiamis, helping you navigate recovery after stroke.
Bill from recoveryafterstroke.com This is Episode 127. And my guest today is Jack Breitenstein. At the age of 15, Jack experienced bleeding in the brain after an AVM he had from birth burst, causing jack to go into a coma and experience seizures after he woke.
Now, this episode is a very special one. And it’s probably my favorite episode for the year, coming up to the end of the year. I know, I’m not supposed to have a favorite episode. Because every guest on the podcast is an amazing person who’s made an effort to come on and share their story in the hope that it’ll make a difference to other people.
And podcast guests and episodes, they’re like children, you can’t really have a favorite one, and you’re not allowed to choose. But in this particular case, I’m gonna make an exception. And the reason being is because Jack came onto the podcast. And you will notice when the interview commences, that he has aphasia.
And it’s quite difficult for Jack to go through the process of having a conversation completing sentences. And it is an amazing thing that he’s on the podcast because I’ve reached out to many stroke survivors that have aphasia who haven’t been able to be guests on the podcast.
And I completely understand the reasoning behind that. But as soon as I reached out to Jack and asked him if he would like to be on the show, he straight away said yes. And we made it happen really, really quick. I just love his enthusiasm, his willingness to participate, regardless of the things that he’s experiencing.
And during the interview, we’ll get to hear about some other ways that he has continued to participate and go out of his way to challenge himself so that he can prove and encourage others. So as we come to the end of 2020, it’s been a very challenging year.
And nonetheless, stroke survivors have turned up to get this podcast to the point of having more than 120 episodes, where you can listen to other stroke survivors talking about what happened to them at the beginning, how the recovery is coming along, and what has happened over the years as recovery has continued.
And it’s really important that you understand the way that each podcast is structured. And the reason being is because I want to make the story give importance to the episode that occurred. But then also, I want to paint the picture of how recovery continues to happen over the months and years post-stroke, regardless of people’s deficits and experiences and the things that they struggle with.
They’re still able to get back into life, they’re still able to become active members of their community, and they’re still able to achieve their goals and fulfill their passions. So thank you for being with me on this journey in 2020. This crazy Coronavirus a year and I really appreciate all the feedback that I get. And I really appreciate having you as my listener.
I really appreciate having you as somebody who has reached out and asked me questions. I really appreciate the people that have come on board as coaching clients. And together I really believe that we can find a way to overcome the deficits and the challenges that Stroke has created for us, and in spite of that, continue to have a really fulfilled life. So thank you once again. And without further ado, it’s on with the show. Jack Breintenstein, welcome to the podcast.
Welcome mate thank you for being here. I really appreciate it.
Tell me a little bit about what happened to you.
Well, I had a stroke three years ago, and well, first week after my birthday.
You had a strike three years ago after your birthday. How did you turn?
Okay do they know what caused the stroke at 15?
Oh, yeah I had a brain injury AVM.
You had an AVM arteriovenous malformation?
And the AVM burst? Is that what happened?
Before burst. Did you have any idea that this thing was in your head? Did you have any symptoms headaches, anything like that?
No this happened (inaudible)
What do you remember? about the time that it burst? Were you with it? Or did you just wipe you out?
Just wiped me out just black.
Just black. Did you have headaches? Or did you feel any symptoms, nausea or anything like that?
Oh, I play soccer. And late afternoon, I had a bad headache. And I fell down in my mom’s room and I collapsed.
You play soccer. You had a bad headache. And you collapsed.
And your mom was with you?
Yeah. My parent’s room.
You’re in your parents room and you fell. You collapsed. And they took you to the hospital?
And then do you remember waking up after that? What was that like?
I had a seizure and three weeks comma.
So you were in a coma for three weeks?
Wow, man. And then you woke up from the coma? And were you aware of your situation where you were? Did you know that you were in hospital or?
As well as not being able to speak. Did you have challenges not being able to move as well?
Yeah, two after the coma after two and a half months at the hospital. (inaudible)
So you were in the hospital and then after you woke up from the coma, you had multiple seizures?
Yeah. No. No. Two days at the hospital
Two and a half days at the hospital.
That’s all just two and a half days?
Wow. Ok so you were at the hospital, in a coma. And then you also experienced seizures. Is that right?
And then you did rehab to learn how to walk again and use your arm again?
Learn how to wheelchair, and then cane and then walk by yourself.
And now I saw you before walk to the back of the room there with out any trouble. Is there any other issues associated to your walking?
And no. I walk by myself.
How long did it take you before you went back to school?
September six months?
Was it difficult going back to school?
What were some of the hardest things for you to adjust to when you went back to school?
Oh I had my cane and walk and elevator and crowd in the hallways.
So going back to school was quite challenging, was it difficult getting back involved with your friends and starting where you left off?
Yeah, my friends, I had a friend. Same friends. (inaudible) And stroke is hard.
Stroke is hard yeah?
How long has it beens since you had the stroke? How many years ago? Was that?
Three and a half.
So now you’re nearly 18 years old?
Yeah. But it was awesome.
Speech improvements with Aphasia After Stroke
When you went back to school, did you have the ability to communicate like you can now? Or was it less of an ability at that time when you’re still recovering?
Well step by step. Like, three days ago, talking was difficult, but in a long way I’ve done speech therapy all the time.
Yeah. And is your speech improving all the time and still improving?
Yeah, and you’re happy about that?
When does speech become difficult? Is there times during the day where your speech becomes more difficult. Say then at the beginning of the day do you get tired and then does that make it harder to get words out?
Yeah, sometimes. Speaking sentences and long words (inaudible)
What some of the most difficult times I’ve tried to communicate to people do you find some people struggle to understand you? Does that make them impatient and how have you managed those types of scenarios?
Um, well, friends, I know before I know it’s hard Before, but friends three, years long was someone talking and talking more now.
You’re talking more now?
And with aphasia, it’s not a problem understanding me. It’s just a problem making the words come out of your mouth. Is that how you would describe it?
So it’s just getting the words out is the hardest part is that the words are here, but they don’t come here. How is it for you?
Speaking languages is hard. (inaudible)
So the information is here. Sometimes getting it out of your mouth is a little bit hard.
Okay. So when you went back to school, were you able to focus and concentrate on your studies? Did you find it easy to go back and learn the things that you were learning? As a 15-year-old and 16-year-old?
Well, no because I’m speaking, more speaking now. Because before speaking one word or two words. But now, there’s a speaking now at school.
So you went back to school? Did you complete your schooling? Have you finished that now? Or are you still at school?
Still at school freshman year.
So you missed one year of school because of the illness because you’re in hospital? And then you went back and you’re continuing with your studies? Are you nearly finished? When do they finish?
Oh, so another year.
Another year or so?
Do you have any thoughts about what you might do when you finish school? Are you going to continue studying? Or are you looking for opportunities to work?
In college speaking sentences is hard to but yeah, I’m thinking college.
So you’re looking at college. Awesome. And do you have some tools that help you communicate with people to speak? Is there some kind of a piece of software or an app or a machine that helps you get words out that you can’t get out?
Yeah, apps that can read aloud.
Like a translation app that speaks the words that you’ve typed in into the app? Is that right?
So you have some ways to overcome some of the challenges with getting words out of your mouth. That makes it a lot easier because people before you many years ago, they didn’t have all these tools that are available.
Yeah. This is how, because speaking is hard but through apps can make a change.
Yeah, you got the apps and they help you. So what will you study? When you go to college? What do you hope to study?
I don’t know now but, now I’m hoping to math and I don’t know.
Are you good at numbers?
Courage to be on the podcast
That’s awesome, man. So some people who I’ve contacted on the podcast before, I’ve contacted some people who had aphasia, were not interested in coming on to the podcast because they couldn’t complete conversation in the way that they felt comfortable. And I sent you a message. Do you want to be on the podcast? And you said yes, straight away. What makes you say yes?
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 long will it take to recover? Will I actually recover? What things should I avoid in case I’ll 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. 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.
Well, I get an opportunity for you and me and a chance to be on a podcast.
So it’s an opportunity for you and me to meet. And it’s a good chance to be on a podcast yeah?
Yeah. It’s challenging.
And it’s challenging you. Okay, so you like a challenge you like it when people give you a challenge to make things hard for you so that you can practice and get better?
Okay. So what other things are challenging for you to do that help you get better?
Walking is hard, because walking is fine, but running is hard cause running in soccer and baseball me I don’t run as much as I used to. And I climbed the Sears Tower.
You climbed the Sears Tower recently?
Two years ago.
Two years ago, the Sears Tower is massive man.
Yeah it is.
How tall is it? You know?
104 flight of stairs.
Wow how long did that take you?
One hour and 30 minutes.
One hour and 20 minutes?
That’s huge man. I wouldn’t be interested in climbing the Sears Tower it’s way too tall for me. Which city is the Sears Tower in?
Which city is the city tower in?
What do you mean?
Where is it located? The Sears Tower? The Sears Tower that you climbed where is it?
Wow, man, that’s pretty insane. I wouldn’t be interested in climbing that many flights of stairs. I’m happy to climb two or three. But that’s about it. Now was that a some kind of a charity organized event or how come you’re allowed to even climb the Sears towers? How does that work?
Shirley Bryant affiliate of hospital.
So it’s organized with the hospital.
And do they make it a fun event for people to attend if they wish?
And is it a fundraising event? Do you raise money for the hospital?
How much money did you raise?
How much money? Did you raise?
Man, that’s a good effort. Well done. That’s so good to hear. It’s 110 stories. Oh no it’s not I was trying to find it on the internet here.
Sears Towers height. It’s 422 meters high, and it’s 527 meters to the tip. So it’s quite high wow. So when you go to college, and study maths. What do you hope to do with that? Do you hope to begin work in a particular career? Or is there something that you’re aiming for?
Yes. Math, this is challenging but I’m still yeah, it’s challenging.
Tell me, what are your hobbies? What do you enjoy doing when you’re not studying Or climbing up stairs?
I like to play soccer, and baseball, and I threw out a pitch at Wrigley Field.
You threw out a pitch recently?
Yeah Wrigley Field.
At Wrigley Field?
At the Cubs?
You threw out the pitch at the Cubs.
Wow, man. That’s pretty cool. So how did you get to do that?
Oh, my mom she reached out to the Cubs manager. And yeah.
Well, man, that’s so cool. There’s not many people have done that.
Hey tell me are the cubs any good at baseball?
They used to be the worst team in the league.
And then they won the World Series.
How amazing was that when they won the World Series? How many years did they wait to win the World Series? How long did it take them to get to that point?
Well, 100 years?
100 years? It’s an amazing story for if you continue focusing on your goal, maybe you’ll eventually get there.
Never give up.
Who’s your favorite player?
Well, actually the cubs and cardinals are against each other.
Alright, what? I missed that so say that again? Who’s your favorite player?
Well, I like the Cardinals.
You like the Cardinals?
You like the Cardinals but you through the pitch at the Cubs?
So which is your team? Is it the Cubs or the Cardinals?
So the Cardinals who are they?
Oh, yeah. St. Louis.
Okay. And the cubs, and the Cardinals are rivals, aren’t they?
Okay. So when you threw the first pitch at the Cubs, were they playing the Cardinals that day?
Right. Okay. So, you got to be on the ground with your team, the Cardinals at Chicago?
Okay. That’s brilliant man. And tell me about who won that day. Which team won your team or the Cubs?
The Cubs won?
Well, nevermind, at least you got to throw the first pitch. Who’s your favorite player? Then at the Cardinals?
Oh, yeah. Yadier Molina.
All right. How do we spell that?
Yadier Molina, Y.
He looks like he’s a decent player yeah? He has had so far 2001 hits, he has had 160 home runs, he has runs battered 932, and he has a batting average of 281.
That’s pretty good. Did you get to meet any of your favorite players that day?
Oh, Yadier Molina, I gonna toss up and he caught it and yeah.
You got to meet Yadier Molina?
Fatigue and AVM Recovery
That’s pretty cool, man awesome. Tell me when we have conversations like this that lasts a long time. Does that make you tired?
Well, no, no.
No it doesn’t make you tired. So you don’t experience fatigue or is fatigue also something that you experience?
Like a baseball game. Me I am ready (inaudible)
Okay, so you’re ready to play baseball?
No I’m tired later than usual.
Okay, so at the moment, you’re getting tired later than usual.
So there’s less tired and less fatigue at the moment.
Okay. At the beginning, did you used to be very easily fatigued and tired?
And that’s improved over time?
That’s good. So that should continue to get better and better. Do you still go to speech therapy?
How many times? How many times a week?
Once a week.
Once a week?
Four hours a week?
No, four a week.
Four times every week?
Okay. And do you practice your therapy at home as well? When you’re in your room on your computer? Is there other tools that you use? Or do you just do that at therapy?
Yeah. Physical therapy, We’re not sure but it shows by the stretching and listening. and it helps improve.
And so you do stretching and physical therapy as well?
Are there some things that you prefer to do? Instead of other things? Do you enjoy doing the stretching and the physical therapy? Is that good for you?
How’s your memory? Do you have any dramas with the memory?
No. Well, no.
Yeah. I had a seizure.
Recently, you had a seizure recently?
No, back in the day. Two seizures.
Two seizures. But your memory is okay these days?
Awesome, man. What do you love to do when you’re not playing soccer? What do you do? Do you play games on the computer? Do you enjoy online?
My hand is hard to control. But I play video games yeah.
And which is the affected hand? Is it the left hand or the right hand?
Your left hand is affected.
Yeah. No, the other one.
The right hand is affected. Yep. So your AVM was on the left side of your brain. And did you have surgery to remove it the AVM?
Yes. They took it out.
They did? Was it a big hole in your head?
Yeah, I had similar surgery they made a small hole in my head. Do you have siblings, brothers and sisters?
So when I had surgery on my head, and they opened up my skull it was proof to my older brother that I had a brain because he used to say grow a brain all the time to me. So I proved to him for the first time that I actually did have a brain because we saw it. Other people saw it. So how old was your brother at the time?
He was 33 years younger than you?
Is he a good younger brother? Does he help out?
Yeah. He was pretty well. They were me and father play (inaudible)
Yeah, is he supportive, or does he still give you a hard time like all younger brothers do?
That’s good. That’s his job. What would you like to tell people who might be listening to this podcast? About some of the challenges that you have with aphasia? What is the message that you would like them to have about people who have aphasia?
Well, still smile.
Still smile. Yeah, of course. And it’s just a communication issue. It’s not an issue with the other parts of the brain.
Being treated differently
And do people treat you differently? Because of your voice?
Is that frustrating make it difficult for you sometimes?
Yeah. It’s difficult.
Are some people mean and nasty?
That’s good. Man. I really want to thank you for saying yes to being on the podcast. Man. I really, truly appreciate it. I think it’s an amazing thing that you’ve done by coming onto the podcast.
Thank you for being here.
You’re welcome. And hopefully, what this does is get the message out to people who are listening about some of the challenges that people with aphasia face. And how brave it is for people with aphasia to get onto a podcast like this and have a conversation with me.
I think it’s amazing. I’ve encouraged many people with aphasia to come on to the podcast, but most of them prefer not to and I understand that’s perfectly okay. I think you’re doing a great thing for that community, because they need to feel that it’s okay to be brave. And to come onto a podcast and talk about some of the challenges.
Yeah. It’s hard and but it’s difficult.
It’s difficult, but it’s getting better?
Well done, Jack. Man, I really appreciate it. What I’ll do is I’ll edit this. And I’ll put it together. And I’ll send it across to you so you can have a listen to it.
And tell me what you think. And then I’ll also post it on social media and tag you into the post.
And you can share it and let people know that you are on the podcast, as well.
Yeah. Thank you.
If there’s anything you need from me, if I can help you with anything, I’m in Australia, I’m quite far away.
Yeah. There’s lots of things I can’t help you with. But if there’s something that I can help you with, just reach out and let me know.
Hit me up on Instagram or email.
Enjoy the rest of your, is it nighttime there now?
No. It’s still noon.
It’s daytime or night time there.
Yeah. Enjoy the rest of your night. My day has just started. It’s 10 o’clock in the morning here. All the best Jack, thank you so much for being on the podcast. I’ll get this back to you. In the next week or two.
Oh, yeah. Thank you.
You’re welcome, mate. Thank you. See ya.
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