Recovery After Stroke

Recovery After Stroke

By Recovery After StrokeEducation
Download on the App Store

Recovery After Stroke episodes

  • My Stroke Recovery Story – Michael Shutt

    Michael Shutt is recovering from multiple ischemic strokes the aftermath of which left him with vision issues and some paralysis. In that time he wrote and recorded the podcast series a lesson in swimming.

    Socials:

    https://www.instagram.com/whmike/
    https://www.instagram.com/alessoninswimming/
    https://www.alessoninswimming.com/alis-radio-play

    Highlights:

    02:21 Introduction

    03:36 The Begining
    11:45 Identifying The Symptoms
    16:55 Refusing To Get Help
    22:55 Slowing Down
    33:30 Finding Ways
    41:43 Stroke Recovery Story
    53:53 The Physical Challenge
    1:01:50 Target Audience
    1:14:10 Check In With Your Five Senses

    Transcription:

    Michael 0:00

    There were a few of them that asked what was wrong with me but not in a way of like, do you need help? It’s more like, come on, get it together what’s wrong with you? And I’m like, I don’t know, like, and even the people I worked with like everyone saw it. But none of us knew. None of us knew what it was.

    Bill 0:20

    Maybe Is it a mindfulness thing?

    Michael 0:23

    That was part of it for me, I think because just with that job like I’m, I was constantly multitasking, I was taking care of, you know, 10 people individually while making drinks for 200 people in the restaurant while you know, being quizzed by a manager while having servers like asked me to make change for them or charge their phone or, like it was nonstop. And like I was constantly moving and doing something. And so I was never really present.

    Intro 0:58

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:11

    Hello, and welcome to recovery after stroke a podcast full of answers, advice, and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:22

    I’m your host three-time stroke survivor Bill Gasiamis. After my own life was turned upside down, and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before my recovery was up to me.

    Bill 1:37

    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals, and take back the freedom you deserve.

    Bill 1:53

    If you enjoy this episode and want more resources, accessible training, and hands-on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.

    Bill 2:04

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence, head to recoveryafterstroke.com To find out more after this podcast. But for now let’s dive in to today’s episode.

    Introduction


    Bill 2:21
    This is Episode 161. And my guest today is Michael Shutt, who after experiencing three strokes and serious deficits, still managed to create a one person production called a lesson in swimming, which does a remarkable job of raising awareness about the challenges of stroke recovery. Michael Shutt welcome to the podcast.

    Michael 2:44

    Thank you for having me.

    Bill 2:46

    Thanks for being here. I had the pleasure of getting to know you off the podcast, we had a bit of a chat. And I think you’re an amazing guy first, before we start sharing that with everyone who’s listening because I think it’s the work some of the stuff that you’re doing is really important for people to share, to know about a little bit about what happened to you.

    Michael 3:15

    Oh, okay. Well, in June of 2015. I was at work, I was bartending. And I evidently had a stroke. I did not know what was happening. All I knew was that I felt like a jolt of electricity went through me. I was in the middle of it. It was a really busy day, it was graduation week in Beverly Hills, and the place was packed.

    The Begining

    Michael 3:36

    And I was the only bartender so I was not just making drinks for 250 people in the restaurant. I was also waiting on everyone at the bar top and stuff like that. So I literally had a moment where I felt this jolt of electricity go through me. I was like, Whoa, what just happened?

    Michael 3:52

    And I just kept working because I didn’t have time to stop. And probably about an hour later. I went to say something to someone and words wouldn’t come out of my mouth. Like what’s happening? And I kept trying to talk and I literally could not get the word I knew what the words were that I was trying to say, but as I say in my show, which I know we’re going to get to but I couldn’t get the words that were in my head out of my mouth.

    Michael 4:22

    And they literally just would not come out. And a friend of mine said to me, she goes what’s happening to you? And I being a smartass I go, I don’t know, maybe I’m having a stroke. And she just looked at me. She goes, Oh my God, you’re so dramatic. And, I was like I know, I know.

    Michael 4:38

    And I just kept going with my day and I worked the whole shift and I couldn’t talk to anyone which makes bartending really hard when you’re taking care of people. I couldn’t talk to anyone. And I went home that night and came in worked again the whole next day.

    Michael 4:58

    Again, not able to talk I went a couple days, that would have been Friday, Friday night, I went to a fundraiser Saturday, I directed a play reading in the morning where I pissed off an actor because I couldn’t form words to give him notes. And he just kept saying to me, if you think I’m a bad actor, just tell me I was like, No, it’s not that, because he thought I was being so careful with what I was trying to say.

    Michael 5:24

    And he’s like, just tell me. And then I went right from there to pitch a kickball game. my team’s championship kickball came like I pitched. And then that night, I made dinner with a friend and so none of these other things concern me. What concerned me the most was when I was making dinner, I wanted to open a bottle of wine, and I couldn’t figure out how.

    Michael 5:49

    And I’ve been bartending for 20 years, like, I know how to open a bottle of wine. And it wasn’t that I couldn’t physically do it. I didn’t understand how to do it. And that’s when I was like, I think something’s wrong. And so this was that was Sunday night.

    Bill 6:03

    How many days later?

    Michael 6:09

    It happened on Thursday. So Thursday, Friday, Saturday, Sunday, so Monday, I went to urgent care.

    Bill 6:14

    So it took you four days to work out that something might be wrong?

    Michael 6:18

    Exactly. And I forgot that after I played kickball, while I played kickball, I’ve been a pitcher on my kickball league for four or five years. And I’m without bragging. I’m one of the I was one of the better pitchers in the league.

    Michael 6:35

    And I walked the first four kickers. That day I pitched strike after I mean, ball after ball after ball and everyone’s like, what is happening to you? What’s wrong with you? I’m like, I don’t know. Like, and they were like talking about my arm flopping. I’m like, No, it’s not. I’m pitching perfectly straight there.

    Michael 6:53

    It’s gotta be something with a ball. The dirt must be off for something. I couldn’t figure it out. Yeah, so it’s like, all these things happen. And then I went home that night, and I took a shower, and I went to get dressed. And I couldn’t lift my leg to put my pants on. And that was another little like, red flag moment, or what should have been a red flag moment that was just like, Oh, well, like in my head. I was like, Oh, you’re just being lazy, you need to stretch more.

    Bill 7:22

    I can relate to that. Okay, I’ll tell you what I was working on a job site because we had a property maintenance business. And I’m trying to get on a ladder and my left foot won’t go on the first rung of the bottom of the ladder. So I leaned down, picked it up from the knee and put it on the ladder, and then walked up and didn’t think there was anything wrong with it.

    Michael 7:44

    That’s exactly what I had to do to get dressed. I literally had to pick my leg up and put it in the pants. And I just kept blaming myself going, Oh, you, you know you’re getting older, you need to stretch more. And then with the not being able to talk. Now, I’ve been an actor for so long.

    Michael 7:59

    And I was like, you know, you should be doing vocal warmups, you need to be doing vocal warmups. So I got up every morning started doing vocal warm ups and stretching, thinking that was going to fix everything. So then I finally went to urgent care. And, I told them, I Well, I tried to tell them, I said, I can’t talk and I can’t lift my leg and they’re like, we’re going to send you to the ER, what they said was, and this is something I’ll never forget, they said, we think you either have a bleeding brain tumor, or you’ve had a stroke.

    Michael 8:28

    I was like, oh, like you need to go get an MRI. So that’s all I hear. And so I get over to the ER. So I don’t know what came first the chicken or the egg here. I don’t know if it was the stroke that caused this. If this is what caused the stroke, or if it was just getting that news like that I either had a bleeding brain tumor, or I had a stroke. But when I got to the ER and they took my blood pressure. It was 244 over 156 which I don’t know if you guys have the same numbers.

    Bill 9:00

    That’s pretty high. Yeah we do.

    Michael 9:01

    Or what it should be. And they like immediately got me into an IV drip of medication and then got me into an MRI. And next thing I knew I was in the intensive care unit and a doctor came and said you’ve had a stroke three or four days ago.

    Michael 9:22

    And this is the thing they said that will haunt me. They said there’s also evidence of a previous stroke. And did you know about that? I was like, no. And then they started like berating me like asked me why I waited so long to come in. And I was like, I didn’t know like I didn’t I like when they said you’ve had a stroke, the first thought in my mind was, am I about to die because like all I knew of strokes were like I knew like people in their 80’s had strokes.

    Michael 9:54

    And that’s was usually the last time it happened before they die so I literally did not know what a stroke was I it wasn’t within my frame of reference. I didn’t have I’d never known anyone that had a stroke. I yeah, it was not part of my world. And that’s, well, that’s one of the biggest reasons I ended up doing what I did.

    Bill 10:21

    I dislike it, to be kind, I dislike or when medical people say that to somebody who’s having a stroke. One of the reasons they didn’t do anything about it is because they were having a stroke.

    Michael 10:35

    Exactly. Exactly.

    Bill 10:37

    That’s one of the reasons.

    Michael 10:39

    Yep. And because, as you know, I’ve written a whole little monologue about this in my show, and one of the lines in there is like, maybe the stroke screwed up my brain and I didn’t understand what was happening. Like, I’m not thinking clearly I clearly was not thinking clearly.

    Bill 11:00

    But you’re not thinking clearly, you don’t have any skills to know what a stroke is to understand it to talk about it to recognize it. Everything is working against you. And then the people around you also don’t know what a stroke is. They also don’t know what the signs are. They trust you. They believe you when you say there’s nothing wrong with your hand when there clearly is they doubt themselves.

    Bill 11:23

    And then they just go on with everything. And they reckon that you’re bad pitching game is just an anomaly. Oh my gosh, Michael’s had a bad day, you know, we’re gonna have to work out what it was. And that’s just the way it goes. That’s, the challenge of having a stroke. How do we generate awareness?

    Identifying The Symptoms


    Michael 11:45
    Yeah, how do you identify it? And how do you claim it? Because it wasn’t just me, like, I wish it would have been one thing if I had been alone for four days and just been afraid to go to the hospital. Like, I was having these red flags, but I was around people the whole time.

    Michael 11:59

    And they saw them to like, and like none of us knew what a stroke was, like, I was just being a smartass, when I said, maybe I’m having a stroke. I didn’t know what that meant. Like, that’s just like a sarcastic thing to say.

    Michael 12:12

    And sure enough, I was. So anyway, I had that one. And I was in the hospital for, I want to say like three or four days. And they let me go. And I had a follow up with a doctor that was sort of assigned to me and the hospital he was not part of the neuro team, or part of the stroke team he’s just like the doctor on duty.

    Michael 12:35

    And when I got to him, and I asked him, it’s funny, it goes back to your questions that you tell people to ask. I wish I had seen that. I wish I’d had that list at the time. But I sort of intuitively knew to have some of them.

    Michael 12:49

    And I said to him, I said, what kind of stroke did I have? And what caused it? And he literally looked at me and said, Oh, I have no idea it’s like our Internet’s down here in the office, and so I can’t access your charts right now.

    Michael 13:02

    And I’m like, you called me in here for follow up, and you don’t have any of my information? So I left there and I immediately went and got a new doctor. So I got a new doctor, everything was going great, they had me on blood pressure medication, I was working out every day I was eating healthy, I had lost like 30 pounds, like I was, want I say was in the best shape of my life.

    Michael 13:28

    And I think I was and I was at the gym one night, so that was June. This was in September of that same year, I was at the gym, and I just finished like a chest and arms workout and like, got on the treadmill and started running. And I did a three mile run, I’ll never forget this.

    Michael 13:34

    That night, I don’t know if this will resonate with you being in Australia as much as it does here in the States. But the night that I was working out and that I was at the gym, we have TVs in our gym. And I was on the treadmill, I looked up at the TV, and the presidential debate was on.

    Michael 14:04

    And I was like, Oh, you’ve got to be kidding me. Like I was listening to them. And I was like, please just turn this off. Like I cannot, like it was not a good presidential debate. It was the primary so it was all the people that don’t get elected. It was like all the for lack of a better word.

    Bill 14:29

    People that don’t get elected, I know the ones you mean.

    Michael 14:32

    Yeah exactly. All of them spouting off and throwing each other under the bus. I was like, Oh, I cannot listen to this. And so I turned on Kelly Clarkson and I started running to her like anything to drown out the debates.

    Michael 14:46

    And I finished my run and I turn off the treadmill and I stepped off and my gym has an upstairs and downstairs and the door out is in the downstairs. So I was going down the stairs to leave and as I was going down everything changed like I was going down, and then all of a sudden, like, it was like I stepped into a surreal world.

    Michael 15:05

    Like, my vision went, my senses changed, to cut to the chase, I had another stroke. But this one was massive. And I was on my way down the stairs from my car. And that was what was in my head. I was just like, get to the car, just get to the car, just get to the car.

    Michael 15:24

    Like, I don’t know why I didn’t want to let anyone know. Like, I don’t know if it was embarrassment, or I don’t know if it was pride, or I don’t know if like, I didn’t want to disturb anyone or what but like, my thing was like, just get to, you’ll be safe in the car.

    Michael 15:36

    Like because I didn’t understand what was happening. Because it was such a completely different experience from my first one. And like it was literally like walking through, like a kaleidoscope that’s turning. And like I said, like, I could see sounds and hear colors.

    Michael 15:55

    I didn’t know how to make it to my car because I couldn’t see anything. So I just kept hitting the unlock button on my keychain. So the lights on the car would flash and the car would honk, so I knew which way to go.

    Michael 16:12

    And I got another car and I started to back up and I was like, I don’t think I should be driving. So I pulled the keys out of the ignition. I threw them over my shoulder into the way, way back where I couldn’t get to them. I was like, okay, now I can’t drive even if I think to I can’t get the keys.

    Michael 16:31

    And I knew I had to call 911 because that was the one thing. The one thing that I got out of my first hospital stay, was they impressed on me like if this ever happens again, do not wait. Like, do not wait four days, do not like don’t wait for someone else to take you just call 911 tell them that you’re having a stroke. And we’ll have the stroke team assembled by the time they get you here.

    Refusing To Get Help


    Bill 16:55
    Do you reckon that there’s a disbelief situation going on there? Because I did exactly all that I did a lot of those things. So the first time I ignored it for seven days, the second time I ignored it for half a day. Went to hospital but got somebody else to take me didn’t call emergency services.

    Bill 17:17

    The third time I drove myself to the hospital. Like is it what do you think it is? Like is it complete denial? Or is it a missing some kind of like a instinctive thing is missing? Or is it an overthinking head that doesn’t want to ask for help annoy people? What the hell is it? Because it’s such a serious thing that happens a lot. I hear about it from a lot of stroke survivors.

    Bill 17:50

    How is it that we just don’t ask for help? How is it that we don’t say I need help if we couldn’t walk, we’d look up and go, I need help somebody helped me walk. But because we can kind of stumble and bumble and mumble our way through, we try and push through in the worst possible time.

    Intro 18:09

    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 18:33

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called the seven questions to ask your doctor about your stroke.

    Intro 18:52

    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.

    Michael 19:12

    Well, I certainly can’t answer for anyone else. But I know for me, like asking for help is that was harder than recovering from the stroke and like having to learn how to ask for help. That’s like I’ve I have prided myself my whole life on taking care of myself like not that I didn’t have my family is incredible, I mean they have taken very good care of me throughout my life.

    Michael 19:38

    But I like to do things on my own I like to be independent and I like to take care of myself I don’t want to rely on other people. And part of it is I don’t want to be a burden to other people but yeah, asking for help is that was not easy for me. That was something I had to learn I think I’m still learning it, I’m still not great at it. I’m not adept at it. But yeah, that night like, I didn’t know what was happening, but I knew I would like, somewhere inside me. I knew what was happening, but I had no understanding of what was going on. If that makes any sense.

    Bill 20:23

    It doesn’t but it does, because that was me. And I completely relate to that. But it’s a topic for a much deeper conversation, or it’s a much deeper like, research project, or something I don’t know what it is. But I imagine that very few stroke survivors, you have a stroke, go, I think I’m having a stroke, or something’s happening to me, let me call for help immediately.

    Bill 20:54

    I’ve never heard of anybody that did that. Not a single person. And you went back to work. And this is the real bizarre thing about all the people that were around you, you’re in a bar, there’s people around you all the time. And it’s okay, that the guests are having a drink. So they’re not really paying attention to you. You’re the guy who gets them the drinks, and they’re paying attention to their friends and their groups and whatever.

    Michael 21:18

    Wait, let me clarify that. I worked Tuesday through Friday lunches, so in Beverly Hills, it’s a very, like business oriented area. So all the people sitting at the bar people sitting having lunch, but they’re all regulars. They all come in every day. So they all know me. They all know me very well.

    Michael 21:40

    And they like they come in and they expect to be, you know, taken care of very well. I know what they like, I know what they don’t like, I know what their drink is. I know what they have for lunch. I know what they’re allergic to, like, I know if that’s there is somebody in their seat, like I know everything.

    Michael 21:56

    And they expect me, to be there. And but they also come in for conversation. You know, like, they have one hour a day where they can just like forget about everything else. And they just want to, you know, just talk. And so I’m there to talk to them. And that’s part of my job. And I know all their stories. And, that was a day where like, I couldn’t talk to them.

    Michael 22:20

    Like they would talk to me like, I’d be like, one was like, what is wrong with you? What like, there are a few of them that asked what was wrong with me, but not in a way of like, Do you need help? It’s more like, come on, get it together what’s wrong with you? And I’m like, I don’t know, and even the people I worked with, like everyone saw it. But none of us knew none of us knew what it was.

    Bill 22:47

    Maybe Is it a mindfulness thing? Is it never being really present to where you are and who you’re talking to? And what you’re with?

    Slowing Down for Michael Shutt

    Michael 22:55

    I think so yeah, that was part of it. For me, I think because just with that job, like, I was constantly multitasking, I was taking care of, you know, 10 people individually, while making drinks for 200 people in the restaurant, while you know, being quizzed by a manager while having servers like asked me to make change for them or charge their phone or, it was nonstop.

    Michael 23:25

    And like I was constantly like moving and doing something. And so I was never really present. And that was years of that, like years of just multitasking constantly. which ironically, is one of the things I cannot do now. That was one of the things that was taken away from me a little bit and and I’m okay with that. I’m okay with slowing down and doing one thing at a time.

    Bill 23:52

    Yeah, if there’s one thing that multitasking, I think leads you into, at least me when I’m speaking for myself is it leads into easily being distracted from stuff. So multitasking makes it so that when the phone notification goes up, I have to look at it when the email notification comes through, I have to look at it.

    Bill 24:13

    And there’s so much junk coming through my emails and phone and messages and some good stuff as well. That I can be forever distracted and in sitting in front of my desk for an hour to focus on some work, probably takes an hour and a half longer than it should have.

    Bill 24:33

    And it did at the beginning it used to tire my brain and it used to tire my mind by having too much going on at the same time a lot of stroke survivors talk about that as well. So it was good not to do it but I found myself back in that space where I am getting distracted.

    Bill 24:53

    But those days usually other days where I’m least productive and I don’t feel So good about it. When I get to the end of the day, as you know, I feel like I haven’t achieved a lot. And I feel more tired and more exhausted on those days than other days where I’ve just had a one track bind, for example, to sit down.

    Bill 25:15

    And for three or four hours to do one task and do well and get finished. There’s none of that going on. So yeah, so you’ve lost a little bit of that multitasking. So that means that, are you better at being able to get other stuff done one at a time? How do you do that? Do you make a list?

    Michael 25:37

    Absolutely. I make lists. It’s right in my well all three of my strokes were in the right hemisphere of my brain. So I became very left brain oriented, I think. And so things like lists to do lists or bullet points or things that are very clear, and structured. That works for me now. Like big concepts, and like, just overarching things like, that tends to overwhelm me a little bit, but as soon as I break it down into a list of bullet point. Then it’s much more manageable.

    Bill 26:17

    How long ago was the stroke? How old were you?

    Michael 26:22

    It was 2015. And I was 48.

    Bill 26:29

    And no work at that time. You weren’t working?

    Michael 26:36

    After the stroke? No.

    Bill 26:38

    How long were you out of work for?

    Michael 26:40

    I’m still out of work. I mean, I’ve been well, I’ve been creating. I’ve been busy doing that.

    Bill 26:54

    We’ll get to that in a second. But you haven’t gone back to the bar job?

    Michael 26:58

    No, I don’t think I could. My left arm still isn’t as strong as my right. So I don’t think I can even pick up a bottle with my left hand and pour anymore. And I’ve lost almost all of my vision. I’ve lost three, quarters of my vision, three quarters, my visual fields. Plus, I have double vision and no depth perception. So pouring drinks is that’s not going to be that’s not coming up for me anytime soon.

    Bill 27:34

    People will be wearing most of the drink rather than receiving a bit in their right glass.

    Michael 27:39

    Well, I either be the worst bartender in the world, or the Best Bartender in the world, cuz I wouldn’t be able to see how much I had in there. So people could just keep going, keep going, keep going.

    Bill 27:47

    Yeah. Okay. But like you said, so in that time you got creative, you were always creative. Beforehand, tell me a little bit of the stuff that you used to do in the arts?

    Michael 27:58

    Well, I’ve been an actor my whole life, I have my master’s degree in acting, I spent a year in London with the Royal Shakespeare Company studying with them. I’ve got my undergrad in acting. And I’ve been involved in theatre out here in LA for almost 30 years now. So I’ve always been doing something like like that.

    Michael 28:21

    And I worked with a theatre company out here called Moving Arts. And their mission is we only do original works. So we foster new playwrights, and help develop new plays that will then move on to something bigger, but we help starting off and help nurture it and help it grow.

    Michael 28:47

    And so I worked with them for almost 20 years, and I had been an actor, but I’ve also been a director for them and a producer. And at the time of the stroke, I was running a program for new play development, where we took six playwrights each year. And help them develop a play from the ground up over the course of the year.

    Michael 29:12

    We would do, you know, they would have so many weeks to write a first draft and then we would do a reading of it and get feedback from the actors and everyone, then they’d go back and do another pass at it and we do another reading to get more feedback. And then we would end with a public presentation of the piece.

    Michael 29:35

    And I co-founded it. And I’ve been running that for about I think I ran it for three or four years. And I was it’s funny when were talking about the texts and multitasking. When I had the stroke at the bar, I was actually getting texts from one of the playwrights who was angry that what was happening with his play.

    Michael 29:56

    He wasn’t pleased with the way his play was being supportive. And he was texting me non stop, like yelling at me about it. And I was like, I can’t talk right now. Like, and that was like, that was another like thing that was pulling me away from paying attention. So I always like to tell him that he was the cause of the joke, but he wasn’t.

    Michael 30:22

    It’s just something that I like to hold over his head. Because he said, to me one day with real concern, he’s like, did you ever find out what caused your stroke? I was like, Yeah, you did. But yeah, so I had been working in theater for a long, long time.

    Bill 30:43

    So then how quickly did you switch from, okay, so I’m at home, I’m not working. I’m struggling with depth perception and all these types of things. I’ve got this skill in theater, I’m not doing that anymore. How long did it take for you to go? I think I’m going to share my story and tell my story. Was it always there for you to do something of your own? Or did it just come from this thing that happened, that stroke?

    Michael 31:17

    It evolved. I’ll say it that way. When I was in graduate school, this was back in the early 90s. Instead of doing like a graduate thesis paper, whatever, we all had to do a solo show. Everyone to graduate had to write and perform their own solo show. And I’ll never forget our like, we all grumbled about it.

    Michael 31:40

    We’re like, we’re not writers. We’re not playwrights, we’re actors, and the head of our program said to us very specifically, I’ve never forgotten this. He said, you’re going to spend the rest of your life as actors telling other people’s stories. Like, this is the one opportunity you have to tell your own. What’s your story?

    Michael 31:59

    Well, I was 25. At the time, I didn’t have a story. I hadn’t had a story. But I told one, and it was fun. But at the same time, solo shows gets such a bad reputation. Because to be fair, a lot of them are just vanity projects. They’re people trying to showcase themselves trying to get seen on their sort of ripe for comic fodder and satire.

    Michael 32:29

    In fact one of my friends wrote a solo show that spoofs solo shows and one of the funniest things I’ve ever seen in my life. But it you know, it’s sort of like a trope in sitcoms and even movies, like they pop up like, Oh, God, probably one of the most cliche things you can say to someone is come see my solo show.

    Michael 32:50

    Like, of course, so I sort of always resisted it. I was like, Oh, god, no, I don’t want to do one of those. I don’t want to do one of those. But then, as I was sitting there, you know, there’s this old saying that like a writer writes, when they have a burning question that needs to be answered.

    Michael 33:09

    And to me, I was sitting in the hospital, and I couldn’t explain to anyone what was going on in my brain? And no one understood like, friends, family, I would say even the doctors didn’t understand what was going on with me, you know, a brain injury is an invisible injury, you can’t see it. We don’t necessarily understand what we can’t see.

    Michael Shutt Finding Ways

    Michael 33:30

    But I wasn’t wired the same anymore. And I wasn’t responding the same to things. And but I didn’t know how to explain that. So my burning questions sort of became, How do I explain what’s going on in my brain, when I don’t understand it myself. So I started writing.

    Michael 33:47

    And I just started writing little stories, to help to find the words to explain things, part of it was also that I had aphasia at the time. So even if I did know what I wanted to say, I couldn’t say it. I couldn’t get the words out. But I found that the weird thing to me was I couldn’t say the words, but I could write the words. So I started writing things. And it just started with like sentences and paragraphs.

    Bill 34:17

    When you’re writing words, that you can’t say is it flow? Is it like, nothing’s in the way of getting those words on the paper. Is it just happening, as it always did?

    Michael 34:33

    That’s a good question. I’m gonna say, yes, but maybe at like 85% if that makes any sense.

    Bill 34:41

    Okay, and if that’s at 85% where is the speaking words? What percentage is that?

    Michael 34:47

    Oh, maybe it’s like 15%, I really struggled getting words out. But, writing them that that was that that fascinated me. And so I started working with writing prompts. Like, just because part of this was also, I’d lost one of the things happened to me was I lost a lot of my memory.

    Michael 35:15

    And the main reason I started writing, because there was one day I called a friend of mine that was in the hospital, I called a friend of mine. I said, if you have any time this week, can you come visit me? I haven’t seen you in a while. And he literally Michael, I was there a half hour ago?

    Michael 35:33

    What he’s like, Michael, I was just there. It’s like I was there a half hour ago. was are you messing with me right now? I was like, yeah, I’m just kidding. I’m just kidding. Thanks. So I literally started writing down, everyone that came in, and what, like, what time they came in when so that I could go back and look.

    Michael 35:53

    And so just doing that like writing that down, like triggered things. And so then I thought, like, oh, if I start writing down some some other things that are happening to me, I might remember them. And it might trigger something else. So with the writing prompts, I started taking this was after I left the hospital, just because I needed something to do.

    Michael 36:15

    I started taking up writing class and the writing class, it was like a personal essay and memoir writing class where the teacher would work specifically with writing prompts, where we would start in class, and she would just give everyone the same prompt and you just start writing, and probably write for about eight minutes, then we’d stop and share what we wrote and get feedback on, like, where did it how to develop and stuff like that.

    Michael 36:41

    But I found that, like, as she was asking, like giving these prompts, it was unlocking memory for me that I didn’t even know that I had, and all sudden things started coming back. So that’s what that’s why I kept reading and sorry, I’m all over the mountains right now.

    Michael 36:41

    But when I was in the hospital, a few different people had recommended, they’re like, Are you writing all the time, you should turn this into into a one man show? And I’m like, No, no, I have no desire to to do a solo show. And I’m like, in that the thought of doing that was so daunting. I was like, I can’t write a whole play. I can’t even get through five minutes, you know, without needing a nap, let alone writing the whole play.

    Michael 37:26

    But then once I started doing these rank ups, I thought, okay, I can’t do a play. But I can do a five minute story. And a friend of mine was doing a storytelling night and asked me to go so I went with her and to support her. And I watched all these people get up and tell these five minute stories all in the same theme. And I thought, Oh, I can’t do a show.

    Michael 37:26

    But I can do that. I can tell a five minute story. And so when we left, I said, Okay, I’m going to commit. I’m going to come back next next month. This is a show that happens once a month that I don’t know if you guys have it out. And that’s why it’s called the math. It’s on NPR. It’s a storytelling show. And they’re every month they have it, they have a different theme. And you write a story on that theme.

    Michael 37:26

    And I went home and I looked up to see what the theme was for the next month and the theme was broken. And I I had my notebook open. I just wrote down, my brain broke my closing up book, and I went to bed. I got up the next morning and I picked it up and I walked over to Starbucks, and I just started writing.

    Bill 38:29

    Good stuff happens in Starbucks.

    Michael 38:33

    The coffee, I guess. But that that was the first the first line I ever wrote. For any distance was my brain broke. And it was all because the theme of that show was going to be broken. And so with this show, you go to these, they’re like story slams, and if you want to get up, you put your name in a hat and they pull out you know, 10 names over the course of the night people get up and tell their stories.

    Michael 39:03

    And so they did the first one they did the second one. The third one they pulled out a piece of paper and they go our next storyteller is Michael and I went and it was somebody else our next storyteller is Michael somebody else, seven Michaels in a row and I was not one of them everytime they would say michael I would like start to get up and sit back down, start to get up and sit back down.

    Bill 39:30

    How popular is the name Michael?

    Michael 39:32

    Oh my God I did not. I knew it was popular, I didn’t know it was that popular? But so but that sort of like lit a fire under me. I was like, You know I’d written the story I’d memorize it I that was another thing where I’d lost my memory I in the stories I’ll have to be you can’t bring notes up with you can’t bring papers on with you at all. It has to be done off the top your head so I memorized it and I worked really really hard to memorizing it and I didn’t know if I was gonna be able to do it because I also had lost a lot of active memory.

    Bill 40:05

    And speech.

    Michael 40:06

    And speech Exactly. I was like, but I was determined to do it. And I have a friend who is a stage manager. And I was like, He’s the perfect person to work with me because they have to come in at under five minutes. If you go a little over five minutes, I think you have a little bit of a grace period.

    Michael 40:21

    But if it goes into the sixth minute you you get cut off. So I had him there with a stopwatch and I made him tie me and I kept like doing it and doing it doing it. We, we drilled it and drilled and drilled it. And so that’s why I was so ready to do it. And then I never got called to do it. But I was like, Okay, I did this, I got this, I can do another one. And so I did another one, then I did another one.

    Bill 40:47

    You prepared more stories? Or you actually got to present them?

    Michael 40:50

    No, I didn’t present them. I kept writing them and preparing them. And then I finally end up taking a writing class where the teacher works on story specifically like this, like, sort of gathered a bunch of content. And then she teaches a solo show masterclass. And she’s like, Michael, I think you’re ready to do a show.

    Michael 41:13

    So I took her class and sort of like, I had got probably 25 stories about the stroke, and put them all together and tried it out. And it was a six month class. And we ended with a public presentation of our work. And it was, you know, we all had an hour time slot to share stuff.

    Bill 41:35

    So in the timeframe. So you had the stroke? How many years later, are you doing this? Now?

    Stroke Recovery Story


    Michael 41:43
    This would have been I want to say maybe two years later, might have been 2017 or 2018. I’ll have to do the backwards math at some point. It was relatively early because I was processing as I was writing, like, one of the things that she says is writing our stories helps us figure out our place in the world.

    Michael 42:19

    And, that’s what I was doing. I was thinking like, why am I still here? Like what why? Like, why did I live? What do I have to offer? And that’s what I was learning as I was writing and to go back to something we talked about before like that whole not knowing and not knowing that I had a stroke and not understanding what a stroke was.

    Michael 42:41

    That started to become a passion of mine was to share, not only share my story, but to share it so that people would understand what a stroke was like. Explaining strokes to people that have never had them explaining a brain injury to someone that has never had one is not easy.

    Michael 42:59

    Because like I said before, you can’t see it. So you have to find a way to make them understand. And you know, there are a lot of us that are doing things like this. But we’re all as I like to say we’re all doing it in the way that we know how. Like, I have one friend that is doing artwork, like she’s creating pop ups of art displays of like interviewing stroke patients about their experience, and then creating an art piece that expresses what that was so that people have a visual of it.

    Michael 43:32

    Then there are people like you and I have other friends that are doing podcasts that are getting the information out there. That wasn’t the way that I was going to do it for me. I did it the way that I knew how I knew how to tell a story. And I knew how to make a play that was the big thing for me was I did a bunch of these storytelling nights and I sort of came alive at them I was like, Oh, I can still do this.

    Michael 43:57

    But then when it came time to turn it into a play, I was like, okay, but I don’t want an evening of storytelling. I want it to be theatrical, I want it to be like I’m an actor. I’m a producer, I’m a director, I know how to put on a play. Like I don’t want to just stand there and tell a story I want to like, give the audience an experience that they won’t forget.

    Bill 44:19

    Yeah, well, let me tell you about that. So I’ll tell you about my experience with your play in a moment. But before I do that, so I think one of the really important things about telling your story, or anybody telling this story, it’s purposeful. And if you’ve ever contemplated what am I doing on this planet? What is my purpose? And you’ve tried to work that out in your head, you very rarely come to an answer.

    Bill 44:48

    But when you start doing something, it becomes purposeful and that starts to fill in the space of why am I here? What am I doing on this planet purpose is not thinking thing, it’s not something that you create in your head, and then you go about doing it. It’s something that you start, and then it evolves into becoming part of your life’s work part of your purpose, I found myself saying that, after X amount of episodes of the podcast that I didn’t realize.

    Bill 45:20

    I had got into that purposeful phase of my life, I just thought I was doing it to find out what other people were going through, so I can get help, so I can make me feel better. So I don’t have to talk about it with my wife all the time. So, you know, so because it was driving a bananas, you know, and I need to talk about it all the time. And I don’t know why.

    Bill 45:39

    But I think it’s part of how my therapy, you know, comes about and what helps me heal. And then I don’t want to burden people who think that I’m sharing with them. Because I’m struggling, I’ve got problems, I don’t want them to think that. So what I do is, I don’t talk to the people who can’t handle the constant conversation about it. I do I do like this, which is much more purposeful, useful, and actually helpful to other bunch, a whole bunch of other people around the planet.

    Bill 46:11

    So there’s purpose in life is in the action. And then the purpose comes about. So whatever you’re thinking of doing that you haven’t done for a long, long time, that’s been sitting under the surface bubbling away, and you’ve always been afraid, or you’ll do what laid out or you’ll get around to it, life’s bloody short, just get get started and do it now.

    Bill 46:34

    And what I love about people who I speak to, on the stroke recovery pathway have taken on a big project. So early on in their recovery is that it helps them recover in their own way. It helps them overcome barriers, test their ability, work out where their deficits are, find ways around those deficits, ask for help get other people in on the project, you know, be supported.

    Bill 47:03

    And then what ends up happening is you break through these pain thresholds, these fatigue, tolerances, and all these different things that therapy, a therapy session in rehab, or in outpatient rehab, or wherever I won’t go there, it won’t go there, because they give you the mundane boring stuff.

    Bill 47:25

    But if you have a passion about this, you can push, you know, it’s mind over matter, you can push beyond these, these physical and, and physiological barriers that were dealt with, after a stroke, you can push through them. And there’s kind of joy in pushing through them, because you’re creating something at the end of it.

    Bill 47:51

    So that’s at least my way to try and motivate people to get to the next point of their recovery, which is find your purpose, but don’t do it in your head. Just take action, right. And then I was gonna say that I did listen to your entire podcast series, which is your play, and we’ll talk about that in more detail. You’ll talk about it for me in more detail.

    Bill 48:18

    But I don’t have a lot to compare that to, other than I’ve been to three shows in my life that were one person shows. And one of them was with my mum, and my mum’s a, she’s nearly I think she’s 75 76 somewhere of there. And she’s conservative, she came from a little village in Greece.

    Bill 48:43

    And when she came to Australia, she went about raising a family is working, you know, the usual stuff. And she’s not very broad minded. And I took her there for her birthday with my wife. And the topic discussed wasn’t a topic that my mom and I really spoke about, which was sexually oriented. And most specifically, it was a lady sharing a story about how her lesbian experience and coming out impacted her life and the people around her.

    Bill 49:18

    And I’ve taken my mom there for a birthday. And that’s the first time my mom and I have ever had a conversation like that ever. And all I was doing the whole time because she’s from a Greek background and doesn’t completely understand all of the English is I’m forever sharing with her what the protagonist is saying all the time, like through the show, I’m just whispering in her ear.

    Bill 49:41

    So that was my first experience with a one person show. And it was really difficult to get through that with my wife and my mom and tried to navigate this new experience, right. Anyway, we got through it. And then the other two shows that I went to were One person shows by a lady called Amanda Muggleton who is a renowned Australian actress, she’s an amazing actress.

    Bill 50:07

    And she did a one person show called masterclass. It’s the story of Maria Callas.

    Michael 50:12

    Oh I’ve seen that.

    Bill 50:14

    Oh my God, man, I was floored. I was just in awe, front row, right next to Amanda. She was just going through this moment, it was just like, absolutely being in her in this, you know, Time Warp back in this masterclass of Maria Callas telling people how to be the most amazing opera person in the world, you know?

    Bill 50:38

    And then, a couple of months ago, Amanda Muggleton did another show, which was called, which is going around the traps now, which is called Coral Browne: This Fucking Lady. And that was another amazing experience for me to sit through this show and experience Amanda Muggleton, representing in the best way possible, this lady Coral Browne, who I had no idea about, but felt when I left intimately connected to and I knew her when I left the show, you know, it was amazing.

    Bill 51:20

    The other three experiences that I’m comparing your show to, and your show blew me away.

    Michael 51:26

    Thank you.

    Bill 51:27

    So I really wanted to paint the picture of what I thought is the standard. And then when I got to hear your show, it’s like at a standard like it’s above and beyond that. So now that I’ve set it up and made it sound, like it’s amazing, because it is and it’s a story for every stroke survivor to listen to, and then share to other people, because it gives an insight into what the heck is going on for a stroke survivor during those times. Tell me a little bit about what the story does, is meant to do for the listener?

    Michael 52:08

    Well, okay, so first of all, what you heard was that you heard the radio version or the audio version correct? So we had workshopped the the actual play, like after I did the first public reading of it, it went on, it was almost two hours, it was over two hours long. And I knew I had a lot of work to do, and I know how to cut it down.

    Michael 52:29

    So I started working with the director and dramaturg. And we chiseled away at it and really like honed it down, like figured out what it wanted to be like what the story actually was, as opposed to just a whole bunch of short stories strung together. We carved it out into like, what’s the arc of the story? What’s the journey of this character, like, what, happens? And so then like, once we figured that out, a lot of stuff dropped away.

    Michael 52:58

    So then we have that. And we did another reading of that. And we’ve gotten a lot of great feedback. And then we workshop it for about three and a half weeks, we got a rehearsal room and started rehearsing it and putting it up on its feet, got a lighting designer, a sound designer, and really made it into a play like and so we performed that for two weeks in front of an audience and I thought maybe we’d get like, five or 10 people a night to kind of like who wants to come see a workshop of one person shows no one’s gonna see it.

    Michael 53:31

    We sold out every night, we were on a waitlist for people to get in, we had to add chairs. And I mean, it wasn’t very huge theater. But still it was a nice feeling to like, be completely sold out. And where the producers were like, Can we extend? I went no, no, we don’t extend the workshop, what we’ll do is do the production, like now we’ll make it a show.

    The Physical Challenge


    Michael 53:53
    Because we were on somebody else’s set, like I was rewriting every night, like every night, the show was different because it was a different script every night, like based on feedback we’re getting from the audience. But so I did get to put it up on speed. And the the main thing for that, for me was, I wanted to see if I didn’t know if I could still physically do it.

    Michael 54:12

    Like I knew that I could write the show. I knew that I could stand in front of a music stand and read the show. But I didn’t know if I could still physically perform a show and maintain that energy for what is now like an 85 minute play. Like, just me like no other actors. Like that’s a lot of energy to put out there. And as someone that deals with neuro fatigue, like I was like, is this gonna wipe me out? Like am I gonna be able to do this?

    Michael 54:43

    Like we had to, we learn things during the rehearsal process that we had to like, Diana, my director who’s incredible. She learned that I have a really good solid two hour window of like, intense work the third hour is okay, by the time we get to the fourth our diminishing returns, like, I don’t understand what she’s saying to me, I’m not retaining anything.

    Michael 55:12

    She tells me to do something and I go, Uh huh. And then I go to do and I say, wait, what? What am I doing again? So we learned like, okay, so instead of like, you know, 10, six hour rehearsals, we’re gonna do 15 two and a half hour rehearsals. So we workshopped it, we had it ready to go, we the company, it might my Theatre Company, Moving Arts, they were amazing.

    Michael 55:41

    Like, they gave me this opportunity to workshop, the show, they gave me the space, they gave me the designers, they gave me the director, they like, most solo artists, when when they’re doing their own show, it’s all out of pocket. I didn’t spend a cent, they did everything, they covered everything for me, because they believed in it, they believed in me, and they wanted to support me and but they also, I would like to think, saw that it was a good show and show that they could produce.

    Michael 56:07

    So we did that and got a lot of feedback, I went back to the script, made some more changes. And then we were getting ready to open the show, like we had a, it was gonna be a six week run, we’re going to do 30 performances of it at a big theater. We were getting ready, we’re going to open on May 9, it was really important to me to open in May, because may is National Stroke Awareness Month out here and I wanted to do it to raise awareness for stroke.

    Michael 56:36

    And we had our very first rehearsal, we’re at at the table with all the designers, the producer, the director, the stage manager, me, did the table read, everyone’s throwing out ideas, and all sudden all of our phones went off. California went into lockdown. Everything shut down because of the pandemic. So we never did get to open the show.

    Michael 56:59

    Or I should say we have not yet opened the show. But when that happened, and what like at first we thought it was gonna be a couple of weeks. Then when we realized this is gonna go on for a while. Dianna my director found a grant from the National Arts and Disability center that was giving grant money to people that could produce something during the pandemic, in a pandemic friendly way, like and what’s the word socially distanced in a virtual way?

    Michael 57:30

    So she came up with the idea of doing it as a radio show, and recording it. And so we use this our sound designer, he was both the sound designer and the engineer and the composer. She directed, and I performed it. And we were, we were all in different places. She was in Oregon, I was here in this office, he was in his studio down in Long Beach.

    Michael 57:53

    We’re all on headphones like this and a microphone like this. And just we took it bit by bit. And I think over the course of two weeks, recorded the whole show. And then he edited and edited it together. And I know I drove him crazy because he would send me rough cuts. And I’d be like, Can we take the volume of that effect down a little bit raised this can that crack come in just a beat later.

    Michael 58:18

    Like, I would almost do it like music like bum bum bum crack, and like, and it’s like, Okay, and so we’ve really, like really meticulously went through those recordings, and really wove in exactly what we wanted it to be because I wanted the experience to be as if I wanted the experience to be as strong for a listener, as if they were sitting in the theater and watching the show live.

    Bill 58:46

    Let me tell you I listened to it from the beginning to the end, however long it took about an hour or so. And it felt like I was at a theater because I had all that whole stuff going on in the background. And because I’m not theatrically aware and I don’t understand about backgrounds and all that kind of stuff noises and all that type of thing.

    Bill 59:10

    I just released a one dimensional audios it’s me talking and somebody else talking and I don’t understand all of that stuff. So when I listened to that it did feel like I was at a theater listening to a felt like a proper theatre production that had been recorded onstage. And then it had just been plugged into a into a podcast kind of format. And those sound effects.

    Bill 59:34

    Actually, I related to those things that you experienced that were where I think how you’re going to bridge the gap between the stroke survivor and the non-stroke survivor, the person who goes in there and doesn’t have a clue what stroke is, but then they do know what are lightning strike experience might be like, and how that rattles the body and the rest of it.

    Bill 1:00:04

    So, it was a sensational overwhelm of my senses like everything and not in a bad way. It didn’t overwhelm it crazy. It was like I’m hearing that. And then I’m getting all the layers, the layers in the background, and I’m relating to it immediately. So it was so well produced and so well put together. I just thought it was fabulous. Like, I don’t know, am I telling you that I think I liked it enough?

    Michael 1:00:42

    Thank you. I sincerely appreciate it. And I have to credit both my director Diana Wayne and my sound designer John Zalewski, because John is amazing at what he does, and Diana has such a good well I was gonna say good eye but obviously, a good ear too, like even right from the very first day of recording.

    Michael 1:01:02

    We started with the first story. And she said, okay, Michael, no, she stopped me and she goes, we’re not in a theater, you do not have to project to the back row, like you’re talking to one person, like people are going to be listening to this probably on headphones, you’re in their ear, just talk to one person and really draw them in.

    Michael 1:01:25

    And that was so foreign to me, because I’m so used to being on stage and like having to like I don’t wanna say be big, but at least like get it all the way off the stage and all the way to the back of the theater. And so she like when she heard it like she heard it day one, like like minute one. She’s like, okay, no, we have to reel this in. And it wasn’t just about being smaller. It was in fact, it wasn’t being smaller at all.

    Target Audience

    Michael 1:01:50

    But she hit the nail on the head where she was like, pick one person that you want to tell the story to? And really, really bring them in. And so she said to me, she goes, do you know, do you know who you’re telling the story to? And I said I do. And so I started again, she goes, nope, it’s not working. She asked me who I picked and she goes, that is the exact wrong person to be telling this story to.

    Michael 1:02:13

    And she goes, I want you to pick someone else, someone that you really want to charm. And I went, Oh, easy. And so I picked someone else. And I started doing it. And she goes, That’s amazing. She like so whatever you’re doing you is right on, like, Who did you pick? And I went, Timothée Chalamet. And she’s like, what? I’m like, Timothée Chalamet.

    Michael 1:02:38

    I don’t know him. I’ve never met him. But his work in Call Me by Your Name blew me away. And like, as soon as I saw him I was like, that’s someone I have to work with someday. So in my mind, I was like, This is why you should work with me. Like, but yeah, I mean, obviously, he doesn’t know this, but like, someday he’ll find out like when he hears that the whole show was sent directly to him.

    Michael 1:03:02

    But like that changed everything for me. And the two of them together. Well, the three of us made well, I think made a really good team. But we’re all pretty detail oriented, I guess is the right way to say it. Like, we were like, having like long conversations about like, one beat in there like, Is it this? Is it this is this? But like we would I would throw out ideas like, can we do this? And john would be like, I think we can.

    Michael 1:03:37

    And then Diana would like what I love is they both let me throw out any idea that I had. And then they would reel me in if need be. But I it was really important to me. Like Like we said that the people experienced this I wanted, I wanted people to walk away feeling like they experienced having a stroke without actually having to have a stroke.

    Michael 1:03:58

    I had one friend call me after listening to one of the episodes and this is my favorite bit of feedback that I got. He said I felt like I was inside your brain as it was breaking I was like that’s what I wanted to hear.

    Bill 1:04:13

    See I use way too many words to tell you how amazing it was that person did a fantastically good job of explaining.

    Michael 1:04:22

    He used all the right words.

    Bill 1:04:25

    So the show is called A Lesson In Swimming. Tell me why the show is called A Lesson In Swimming it doesn’t seem to relate at all.

    Michael 1:04:37

    It is called a lesson in swimming because I am one of the most stubborn people you will ever meet on the face of the earth. I had decided at one point that that’s what all of a sudden I was like, oh that’s the name of the show like because it all hinges around. I don’t want to give too much away for people that haven’t heard it yet. But there is a moment where my dad teaches me how to swim.

    Michael 1:05:02

    And it comes at a very crucial point in my story or in the experience. And there is a lesson that I learned while I’m swimming. That is when he says that it’s about swimming. But to me, I apply it to my life and about the stroke. And that’s when a wave crashes over you and knocks you down and you’ve got two choices, you can sink or you can swim. And, and what’s important to me in that sentence, like a lot of people focus on the sink or swim.

    Michael 1:05:43

    To me, the crux of that is you have a choice. And, in that moment that that’s happening, I have the choice to sink, which is easy or to swim. And I decide to swim and I push and I push and I swim. And that’s probably why I’m still alive. And so that, to me, was was where the title came from.

    Michael 1:06:09

    Everyone told me to change it. They all wanted me to have stroke in the title. No, like, it should be called my stroke of luck. I was like, there are five different plays and books called my stroke of luck. No, it should be called this should be called this. I was like, it’s it’s being called what I’m what I say it’s being called.

    Michael 1:06:25

    But so then we finally compromised. I don’t wanna say compromise. I came up with the idea of the subtitle is every stroke is different. And that is another important line in the show. Like we’ve all had you and I both had strokes, we’ve had different strokes, they’ve affected different like they’re there. Many different types of strokes or hemorrhagic strokes are ischemic strokes.

    Michael 1:06:54

    There are strokes that affect the left hemisphere, the right hemisphere, the like I had a, one of my strokes was they called the bilateral, which I guess means it affects both sides. There are so many different types of strokes, and you can’t compare yourself to other stroke patients. You can only help yourself. I bet that’s not the right word. But but you know what I’m saying?

    Bill 1:07:17

    Yes, your journey is a slightly different journey than the other person’s, although it’s a similar path, in your journey.

    Michael 1:07:24

    And we can we can commiserate with each other. I don’t think that’s the right word. But we can we can, we can thank you that that’s where I’m thinking, I’ve had a patient, we can relate to each other. But But everybody’s journey is different. And so that’s why the subtitle, every stroke is different was important. I mean, so and when you see it on the posters, like a lesson and swimming, every stroke is different. You’re like, you’re thinking swimming strokes, but then you’re, oh, no, it’s actually a stroke. And so I like the time. But I did get a lot of a lot of pushback on it. But But I think we’ve, it, we’re settled on that now.

    Bill 1:08:07

    I think so I think it’s a good choice. And because it is meaningful in the story, when you hear that part of it is you go Okay, that makes sense. you relate to it. And then every stroke is different. You know, I love the play on words, you know, it’s a guy swimming, but then the stroke, you know, takes people to this other place. And then I think they get pleasantly surprised as they go through it.

    Bill 1:08:35

    Because they experience your whole the hard part of your experience, like the early days, and then as you come through it and express, you know how this has changed your life in a positive way. So it’s a real amazing way to, I think, grab people and lovingly shock them into this other ending that they no chance would have expected, I think right? So I’m it’s available on Spotify, and it’s available for free on Spotify.

    Bill 1:09:16

    So it’s really easy to get a hold of and listen to and it’s a quick listen in that. You’ve even broken it down in chapters, which I love because it’s four of them. They’re about 20 minutes long each and the whole thing in its entirety is about an hour 36 right. And it’s there’s no boring bits. There’s no bits where you need to stop and you’re in and any of that stuff. It’s just punchy, right through it just takes you on the journey.

    Bill 1:09:42

    And it’s, you get through it fast and you think Well, I’ve already finished it and man it’s like it’s such a, you know what it is it’s a very lovely, a succinct way of telling a stroke story and then the other side and as you can see, I overuse words. So I struggle to do that. And this just does it so well. And it’s a combination of all the people that worked on it.

    Bill 1:10:11

    And I think your conversations with can we make that, you know, sound effect just a little bit later or a little bit earlier, those conversations were well worth having. Because it’s not maybe something that the that the amateur like me is going to pick up.

    Bill 1:10:32

    But the fact that the only thing that I’m getting out of that is the story. And the whole thing is just the whole sweet transition from one phase to the next means that it’s just been done flawlessly, really.

    Bill 1:10:45

    And I hope that it actually gets to do the live shows, because that’ll be next level. That’ll be another experience altogether. Now, with COVID, sort of coming to this different phase, is it possible? Is it looking like it’s going to be available in a theater?

    Michael 1:11:10

    I’m going to say optimistic, cautiously optimistic, Lee, yes, we’re talking about it. We’re discussing this coming may so that way we can still tie it in with National Stroke Awareness Month. They originally wanted me to do it in September, which is now like, that’s, that’s too soon. Like, I’m, I’m personally not ready to be in a theater yet.

    Michael 1:11:35

    Especially with the new variants coming out. But hopefully, my may like things will have calmed down a little bit. And we can we can gather again. And we’ll get to do this. We have it’s, I’m itching to do it. I actually watched the videotape of the the workshop last night.

    Michael 1:11:58

    Just in preparation for this. I was like, I’d forgotten how fun it was like they’re like, you know, I don’t think you go into a show about a stroke expecting it to be funny. And there’s lots of I like to disarm people with humor. And and I had sort of forgotten about that. I was like, Oh, yes, it’s not just like, oh, poor me, I had a stroke. There’s, actually a lot of comedy in it which it was fun listening to the laughter lastly.

    Bill 1:12:29

    Yeah, that I like what you just said there about fun. His stroke isn’t always fun. Like, there’s a lot of hard yards in that. Does that fun helped make the recovery better, does it? Because you’ve been on this journey to develop this product, or this show for a while now. Like in that time, was it fun the whole time? Was it hard? What was it like to experience doing? Trying to develop this? Did you have doubts? What was it like?

    Michael 1:12:59

    Oh, yeah, oh, tons. Um, it’s weird. Like, there were times I was completely overwhelmed. And then there were times where I like, it would be like a light bulb moment, or like, the sun would shine like, it’s gonna go back to something we were talking about before about, like, finding purpose.

    Michael 1:13:19

    But writing the show, like physically writing the show, I had completely lost use of my left arm and left hand. And I was told that I probably wouldn’t get it back. And as soon as they said that, I was like, No, I’m going to. So I started typing, because at first I was writing everything longhand with my right hand because I couldn’t use my left hand.

    Michael 1:13:36

    I was like, like, put the pen down. Like I’m not gonna write longhand anymore. I’m gonna force myself to type. And I started typing like just five minutes a day where I had to literally like, take my right hand and move the fingers on my left hand to the keys. And after five minutes, I would need to take a two hour nap.

    Michael 1:13:53

    And then but I did that for a couple of weeks, and I built up to 10 minutes, then do that for a couple of weeks that I built, up to 15 minutes, and then finally got to where I was typing an hour a day. And now I’ve got both hands all from writing these stories. The other thing I did was it, like I said before, it unlocked a lot of my memory.

    Check In With Your Five Senses

    Michael 1:14:10

    I lost so much memory and just writing these stories. It was like opening Pandora’s box, almost like it was like, Oh, I forgot about that. And I forgot about that. Because I had a good friend who was an incredible playwright recommend to me so whenever you get stuck writing something check in with your five senses.

    Michael 1:14:29

    Say what can I see? What can I hear? What can I taste? What can I touch? What can I smell? And I don’t know if you look back you’ll notice there like probably three or four different parts of the show where I actually do that I go through the five senses where I have the second stroke in the car and I think I’ve died.

    Michael 1:14:49

    I think I’m actually dead. I went wait. I can’t be dead I can touch the steering wheel can touch the window. I can taste the tears coming down my face like I went through all the five senses and then I do Again, when I come out of the the anesthesia, like, what do I see? What do we do? So that like, just that little exercise would start unlocking things for me.

    Bill 1:15:12

    love that. I love that the other senses because your memory is one of the senses, like it’s one part of you. But the physical feeling, and the emotional feeling might still be there. And the feeling in your gut about that experience might be there recruiting those. I love how they support bringing back that memory, like think about people that have Alzheimers that we hear about all the time, who sit in the chair all day at the nursing home, they don’t do anything, they don’t move.

    Bill 1:15:42

    And then all of a sudden, they hear a piece of music, and they’re up on their feet dancing. Okay, so this is what we’re doing. We’re recruiting all these different senses. So there’s a great tip for somebody who’s having some memory challenges, maybe. Maybe they can ask somebody to prompt them in that way. Or maybe they can ask themselves those questions about what was I feeling at the time, rather than what did I just say? or whatever?

    Michael 1:16:10

    It’s interesting what we just said, What were they feeling at that time, because the other thing that it did for me, the writing, it was really healing. Emotionally, because it’s I was talking to a friend of mine one day, I’ll never forget this. He was talking about the experience of having my parents lived with me after the stroke and, and he said to me goes, were you allowed to have your feelings at that time? And I went, Oh, no, I wasn’t.

    Michael 1:16:42

    And all of a sudden, like, when I started writing, I started telling the truth about what I was feeling about things. And that was the first time that stuff was coming out. And it was I remember someone asking me if it was hard to relive this experience on stage. And I said, No, it wasn’t because I relived everything when I was writing it. Like that’s, that’s when that’s when I really dug back in to what was going on. It wasn’t just the, the physical stuff that was happening, it was the emotional stuff.

    Michael 1:17:14

    And there was a lot of emotion in there that I didn’t know how to express and I mean, even, you know, my, my regulatory functions is that what they’re called, like, the, the part of your brain that regulates your emotions, that was all out of whack. So like, I was all over the place, but actually, like stopping and getting present, like, how did I really feel at this time, like that, that got a lot deeper.

    Michael 1:17:40

    And I was actually able to, sort of heal through some of that by writing this. So the writing became physically like it became physical therapy, became occupational therapy became emotional therapy. It was, it was one of the greatest things. I yeah, it was, uh, I’m really glad I did it. Let me put it that way. It’s funny, what one of the one of the things that happened to me, and I’m sure, I was not sure I don’t know if you’ve experienced something like this.

    Michael 1:18:16

    But, after the stroke, I started getting identified as you know, a stroke survivor or stroke patient. I even had one of my doctors come in, and I was in a teaching hospital. And he came in with a whole gaggle of students behind him. They went here is the stroke guy, I went the stroke guy? Are you kidding me? And I’m like, and that was, when I said that this all goes back, everything goes back to choice. I refused in that moment, I was like, I will never be defined by my stroke.

    Michael 1:18:51

    Instead, I’m going to use the stroke as an opportunity to redefine myself. And I clearly, you know, what was before was fine. I’m on a different path now. And that’s all been through the writing like my whole life. I supported other writers and telling their stories, I produce their plays, I directed their plays, I acted in their plays, I help tell their stories.

    Michael 1:19:17

    And now I’m like, you know, what, back to what my teacher in grad school said, Now it’s time for me to tell one of my own and luckily, I have 30 years of experience of helping other people do theirs, that I know how to do it. And, it’s been it’s been an incredible experience.

    Bill 1:19:36

    Yeah. And it’s a story worth telling, because there’s 30 years of experience and depth, to your knowledge to your understanding. I imagine you feel a little bit easier now telling your story now, because early on, like you said at 25 you didn’t have a story, which is not true. You really did have a story even at 25.

    Michael 1:19:54

    Well, I should clarify say I didn’t have a story that I was ready to tell or willing to tell at 25.

    Bill 1:20:00

    Yeah, yeah, which is fine, right? And that’s probably everybody. And well, that’s a lot of people. And there’s some people who feel like they do have a story of at 25. Because that story relates to the people that are 25 and younger. And that’s what it’s about. It’s really about relating. So we get to this age, and we think about, like, I’ve got more years, and therefore I probably relate to more people. It’s like, well, that’s not it anymore.

    Bill 1:20:31

    You’ve overcome your fear story, you’ve overcome your self doubt story, you’ve overcome all that stuff. And basically, now it’s like, well, I nearly wasn’t here. So everything from here for me, this is me list is everything from here on is a bonus. So in this bonus, period, I’m doing whatever the heck I want. And I’m not really gonna care what anybody else thinks, I’m just gonna do it for me, whether they like it or not, is irrelevant.

    Bill 1:20:58

    If they like it, it’s a bonus that they liked it and it helped them. But I’m doing it for me, I had a similar kind of feeling about the book writing a book, people told me, you should put this in a book Bill. And I’m like, Okay, well, Bill had a stroke. The End, big deal. Like, who wants to hear about me, having a stroke, there’s so many people that have had a stroke, it doesn’t mean anything, you have to make the story relevant.

    Bill 1:21:29

    And it has to be, too, like you’ve you’ve said, You’ve picked your avatar, and you’ve got to speak to your avatar. And for me, my story in my book is going to be, there’s going to be that much in it about me like nothing. And the reason is, because it’s not what uh, it’s not what happened to me, it’s about what I learned and what I discovered, and therefore, what might help other people who have a stroke, discover about themselves and learn about themselves, and then hopefully help them heal. That’s a better story, then, Bill, you start a story based stroke.

    Bill 1:22:03

    That’s a way better story. And I feel like your story does that he gives a lived experience of what it’s like to go through an experience stroke gives a lived experience of what’s happening in the aftermath of that, and how you get through it, and how you overcome it. And what the aha moment was at the end.

    Bill 1:22:28

    You know, so that is the one that I relate to, and I get sucked in on but whoever is listening on here, you’re not going to find out unless you jump on Spotify, and do the search for A Lesson In Swimming. It’s free, download it, listen to it, you’ll love it and leave some feedback, get in touch with Michael on Instagram, and I’ll have some of your links, Michael, for people to get in touch with you.

    Bill 1:22:56

    Let him know what you thought of it. And also give it a review. If you can on podcast or wherever you listen to your your podcasts, because the more views it gets, the better it will. It will be found by other strike survivors who really need this sort of stories. they they they really need this because it offers hope. You know, it really does.

    Bill 1:23:21

    I have thoroughly enjoyed getting to meet you on our previous chat offline. And then expand my appreciation for you in this episode. So thank you so much for being on the podcast.

    Michael 1:23:38

    Thank you so much for having me.

    Bill 1:23:39

    My pleasure, mate. My absolute pleasure. Just before we wrap up, where would people find you and get in touch with you online?

    Michael 1:23:52

    Well, I’m on Instagram, as @whmike, then alesund swimming also has its own Instagram page. So it’s just a lesson in swimming. And then my website is www.michaelshutt.com. And on my website, there’s a contact place where you can email me directly. And you can also find the radio show is actually on the website as well. If you don’t have Spotify, although I don’t know who doesn’t have Spotify. But you can listen to it directly on the website if you’d like.

    Bill 1:24:33

    Thanks for being on the podcast.

    Michael 1:24:35

    Thank you so much for having me. This has been awesome.

    Bill 1:24:37

    Thanks so much for joining me on today’s recovery after stroke podcast. You ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:24:55

    This road is both physically and mentally challenging from reclaiming your independence together. Getting back to work to rebuilding your confidence and more. The symptoms don’t follow a rulebook and as soon as you leave the hospital, you no longer have medical professionals on tap.

    Bill 1:25:09

    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you’re not alone. And there’s a better way to navigate your recovery and rebuild a fulfilling life that you love. I’ve created an inclusive, supportive and accessible membership community called recovery after stroke.

    Bill 1:25:30

    This only one support and resource program is designed to help you take your health into your own hands. This is your guide walk through every step in your journey from reducing fatigue to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community. Just head to recoveryafterstroke.com See you next time.

    Intro 1:25:50

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:26:07

    All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:26:30

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.

    Intro 1:26:52

    If you have any questions or concerns about your health or medical condition please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be called triple zero in Australia or your local emergency number immediately for emergency assistance for Go to the nearest hospital emergency department medical information changes constantly.

    Intro 1:27:12

    While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post My Stroke Recovery Story – Michael Shutt appeared first on Recovery After Stroke.

    1 hr 35 min
  • Finding Purpose After Brain Injury – Gary Kearney

    After he was hit in the head with a plank of wood Gary Kearney was left with two subdural hematomas and a subarachnoid hemorrhage amongst other injuries. Today he is a disability advocate in Ireland.

    Socials:

    https://www.instagram.com/explore/tags/purplelights19/
    https://www.facebook.com/gary.kearney.507

    Highlights:

    02:21 Introduction

    03:22 Drugged And Mugged
    12:33 Reconciling With The Present
    18:43 Dealing With Anger
    26:17 Recovery During Lockdown
    33:41 Like No Other
    42:06 Purple Lights 19
    58:10 Viva Vox Ireland
    1:01:48 Accessibility For Disability
    1:08:15 The Reminder

    Transcription:

    Gary 0:00

    Oh, sweet God, it took me about eight years to be fully happy with who I am now. Because you go through the original shock, then you go through the bargaining process, where I’m okay if I can get this back, or I’m okay if I can get that back, or I’m okay if I only have this.

    Gary 0:25

    And you go through the whole process and then you go through the angry mode and the morbidly depressed mode. Morbidly depressed mode can stay there quite a lot of time that’s a horrible experience. I thankfully didn’t last too long in that one. And then you get the angry mode where you hate everybody. And that can come and go well on a regular basis depending on how you’re feeling.

    Intro 0:53

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:06

    Hello, and welcome to recovery after stroke, a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future. I’m your host three times stroke survivor Bill Gasiamis.

    Bill 1:21

    After my own life was turned upside down and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before My recovery was up to me. After years of researching and discovering, I learned how to heal my brain and build a healthier and happier life than I ever dreamed possible.

    Bill 1:40

    And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve. If you enjoy this episode of want more resources, accessible training and hands-on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.

    Bill 2:03

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence, head to recoveryafterstroke.com to find out more after this podcast but for now, let’s dive right into today’s episode.

    Introduction – Gary Kearney


    Bill 2:21
    This is Episode 159. And my guest today is Gary Kearney. Gary was assaulted in his early 40s and the attack left him with multiple head injuries and lifelong deficits these days. Gary is a disability advocate and activist presenter and producer of Viva Vox the disability show with a difference at Dublin City FM, and is the founder of the hashtag Purple Lights 19 Gary Kearney Welcome to the podcast.

    Gary 2:53

    My absolute pleasure. And I mean that, it’s my first podcast, I’ve done radio, I’ve done TV, I’ve done press but never did a podcast. So this is my first, you have my basic first time ever.

    Bill 3:06

    I feel honored and blessed. Thank you so much mate. We have tried to connect a couple of times before but we haven’t made it happen now we have this time, which is good. What I want to know is what happened to you? Tell me a little bit about it.

    Drugged And Mugged

    Gary 3:22

    Well, I was 45 years old. I was on holidays. I was on leave from work. I finished work on the Friday and I had a week off I was going fishing. I went in to see a friend of mine. She was okay and we went to have a couple of pints nothing mad like if I was blind drunk. I would’ve said I was blind drunk and I’d walk in front of a car or fell over but unfortunately that wasn’t the story. I was roofied, and then I was mugged for my wallet.

    Bill 3:52

    Your roofied and mugged?

    Gary 3:55

    Yeah. Unfortunately, as you can see not exactly a leprechaun Irish I’m the joint Irish. And I’m six foot two so like they were robbing the man even out to my face I was able to recover and I got away.

    Gary 4:14

    So I have a plan. My last conscious thought was it’s half nine I walk home 25 past nine coz I was at the park right? So I’ll walk home, I’ll get a pizza and then I’ll go home. So this was about half 11 of the stage I’ve lost two hours somewhere in between.

    Gary 4:33

    And I walked in to the pizza place and I didn’t pack the our robot toy. I ordered the take-home pizza. He said to me afterwards you just look likely you’re long drunk. Wich sometimes a possibility I could be but I wasn’t this time. Started to travel, blood everywhere and collapsed.

    Gary 4:59

    Doctor was there because the nearest hospital is only four minutes away. He was in collecting pizzas for the staff. So he dragged me outside screamed out get this man an ambulance This is not doing he’s seriously in trouble.

    Gary 5:11

    I had an ambulance in four minutes and I was in the hospital for the night. I had oxigen within five minutes, which I think is personally I think one of the big reasons why I recovered the way I recovered.

    Gary 5:24

    I had two subdural hematomas, and a subarachnoid hemorrhage, multiple factures of the base of my skull which is the hardest bone in your buddy to break it’s so strong, but mine was shattered, and nerve damage to the left of my face causing profound deafness on my left side.

    Gary 5:46

    Punctured eardrum and damage to my right 50% deaf in my left ear right ear. So I have hearing aid in my right ear. And people come and shout in my left ear and I think why are you doing that? That doesn’t work at all, it’s only good for headphones, sun glasses and things like that. It’s not good. You know? I can’t hear.

    Gary 6:05

    So that was five and a half years ago. And I got palliative care. Because there was no point in sending me to a neurological specialist hospital. Because there was no point I was going to die.

    Gary 6:22

    Or if I did survive I was going to be in a wheelchair in a nursing home. I didn’t as you can see, I woke up the next day I think or maybe day after, with a hell of a bad headache.

    Gary 6:39

    And only people that have had brain injuries know what a brain injury headache is about? It’s a whole different level of headache. And I’m seeing double, I couldn’t hear properly, and I thought okay, I’m breathing that’s a good start. Okay yeah, I can move everything. That’s okay. Let’s see what I can’t let’s just keep focused on that. And that was the start of the journey. Here I am five and a half years later. And I’m proud of myself to be honest. I am very proud of myself.

    Bill 7:12

    Yeah. So your bleeds in the brain were caused due to the mugging was it assault?

    Gary 7:23

    Yeah, I was assaulted, the neurosurgeon, my consultant said to me, they must’ve hit you with a wooden bat they must’ve hit you with a piece of wood. I said why is that? Did you find sprinters? So I think what’s happened he said no, he said, because there were some given reward. If it had to be in metal, the amount of times that you were struck, you were dead.

    Gary 7:49

    You were just lucky they have wood because there’s a bit of flexibility in wood it doesn’t give it puts all the pressure through to steel object. So it was enough of a cushion from it being wood rather than iron or steel to kill me. So I got with my dad, you know, you’re still looking for splinters back there and I’m gonna start to crack.

    Gary 8:11

    As I’ve said I have a dark sense of humor and I do have a tendency to laugh in the face of let’s be honest danger. You know, it’s you wake up you haven’t got a clue where you are, you haven’t got a clue what’s going on you know everything hurts.

    Gary 8:27

    So you freak out, I do. But then I started laughing like how the hell did I end up here? What the hell happened to me? And go from there? Because they’re normally true. So I get worried about it, and upset about it’s not gonna make it any better.

    Bill 8:43

    Yeah, no, absolutely. What did I steal Gary?

    Gary 8:46

    Nothing.

    Bill 8:48

    They just gave you a beating?

    Gary 8:51

    No they were gonna steal my watch, they were gonna steal my wallet because there was about 800 euro in it and my credit card and all the glass and plastic and all the rest and you know, anything they could.

    Gary 9:03

    Unfortunately, even though I was out of my face, I’m a big lad. And I know how to mix it up when I have to, and I was a lot younger than I am now. But I mean, I have a lovely shiner which I’m trying to hide politely because I walked into a punch.

    Gary 9:17

    But I’m a big fella, I know how to defend myself. And the other thing was somebody said to me, you were drunk and they whacked you on the head I said, yeah, but the survival instinct of you don’t understand the survival instinct until you actually needed it. Like you see, you hear stories and you see videos a woman claim lifting cars off her children and that’s a basic instinct. That’s the most basic instinct you’ve got is to say keep yourself alive. So I fought like hell and I fought them off.

    Bill 9:53

    Since you mentioned it, did you walked into a punch yesterday?

    Gary 9:58

    Yes I did.

    Bill 10:00

    Does trouble follow you around? Or do you look for trouble?

    Gary 10:03

    No trouble follows me around. And I come from a very lucky family. And people say the opposite to us. We’re very unlucky, my brother, one of my brothers had just passed away, he broke his neck in a car crash.

    Gary 10:18

    My other brother broke is back in the car crash, I’ve been attacked, and you know, if it’s gonna happen, it’s going to happen. But our attitude is the opposite our attitude. Well, you know, okay, we’ve been dealt a tough one, let’s get on with it.

    Gary 10:33

    And we laugh, like, the slagging, I get over my brain injuries the tease I get over my brain injuries were rough from my own family, but then I tease them about their stuff. So like, it’s, I found myself that the worst thing for me is, like, I’m invisible, right, I’m six foot two, I’m a big fella, big rowdy pony guy, and a big loud voice, you know like there’s nothing wrong with him.

    Gary 11:02

    And I’ll be talking to somebody like you you know, we don’t look disabled, you know, invisible type. And I say yeah I have multiple disabilities, I’ve brain injuries, I’m deaf, I have this and that.

    Gary 11:14

    And you can see their eyes change, you can see the look in their face. And they stand a little further back, and they start talking slowly, and opening their mouth, closing it. And I’m thinking I shouldn’t have said that, let them think I’m an idiot rather than, you know, they have to do this.

    Gary 11:35

    So we don’t my family you get empathy, you get support but you don’t get sorrow, and you get sympathy for the mess you’re in. But that’s it. And it’s let’s get on and get it fixed. And the attitude was always that attitude was coming from my parents from probably from my grandparents, it’s you’ve got dealt with cards, and now deal with it.

    Gary 11:58

    And that’s been my attitude from the very first, not saying ofcourse that it doesn’t go belly up a lot of times, you know, it goes belly up all the time. And that’s the joy of being brain injured is that. Never sure quite sure what it’s, as I say about brain injury. It’s always surprising. It’s never boring. Because you never know what the hell’s gonna happen next, because you can’t remember what happened. So something happens, it might’ve happened before but I can’t remember it. So it’s, you know, I never get bored.

    Reconciling With The Present

    Bill 12:33

    Did you ever do the whole compare yourself to before your injury and after your injury and find it hard to reconcile?

    Gary 12:46

    I found it hard to reconcile.

    Intro 12:49

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 13:13

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

    Intro 13:32

    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.

    Gary 13:51

    Oh sweet God. It took me about eight years to be fully happy with who I am now. Because you go through the original shock, then you go through the bargaining process. Where I’m okay if I can get this back, or I’m okay if I can get that back, or I’m okay if I only have this.

    Gary 14:17

    And you go through the whole process and then you go through the angry mode and the morbidly depressed mode. Morbidly depressed mode can stay there quite a lot of time that’s a horrible stretch. I thankfully didn’t last too long in that one. And then you get the angry mode where you hate everybody, and that can come and go well on a regular basis depending on how you’re feeling.

    Bill 14:41

    And who it is.

    Gary 14:42

    And who it is yes. And how sensitive you were at that particular day. Because it’s got a Why? In it or something there’s no reason rhyme or reason why we have to be in particularly good or bad form. It’s just it’s sunny. I’m in bad form. It’s it’s raining. I’m in good form. It’s raining I’m in bad form.

    Gary 14:59

    There’s no no logic in it, but there is an arrowhead. Because we’ve seen what’s wrong and we’re upset about it. And the other thing during the course is, you’re trying so hard to be who you used to be, but you can’t be who you used to be. It’s like, a friend of mine said to me one day when I was trying to do what I did when I was 25.

    Gary 15:20

    And he says Gary, you’re 35 years old. You’re not 25 anymore. You cannot do those things, you know, you’re not the same person. So why am I trying to be the person I used to be? So I stopped. I didn’t think there was any point because one, I can’t do it, amd two I like who I am now. I created this person. How many people can say they got a second chance?

    Gary 15:47

    I mean, I got a chance to start with this person, and be who I am. And I’m happier within myself as a passion now than I was before my brain injuries because I had to sit down and look at my life and decide where I was going, what I was doing, how I was going to do it.

    Gary 16:09

    Fall flat on my face repeatedly. Repeat, rinse, repeat. But slowly, but surely. And it took eight years. I got through to trying to be who I was for me. I got through. And this is a subliminal one. This is a nasty one because you don’t see it. I stopped trying to be who I was for other people.

    Gary 16:33

    Because I look to the same, you don’t look disabled. Yeah, you don’t look stupid but looks deceive. I did say it to my boss. So I mean, I wasn’t supposed to, no wonder wasn’t working there much later. And, you’re trying so hard to be what everybody wants you to be it’s like the big swan on the water who gracefully going upstream.

    Gary 17:01

    But that’s like us on top of water, where we look like we’re dealing with everything above ground but then our legs are going like, inside our head, we’re trying to balance the 101 million things we’re trying to balance the function and an able world which wants us to be able to, and we’re trying to be able to make them happy.

    Gary 17:20

    And I honestly think what most of that does is it makes us miserably unhappy and it’s awful. I talked about this to a friend of mine. And she said to me, Gary, it sounds like when I came out. She said you came out as person with disabilities. I said yeah, I have them, I own my disabilities they don’t own me.

    Gary 17:40

    They are a part of me. But they are not me. And once I owned my disability, it stopped controlling my happiness, my sadness, my wants. I came to terms with okay, this is it this is what’s happening. I can do this. How am I going to make it better? How am I going to make myself happy? How am I going to make new friends?

    Gary 18:10

    Because the first thing I saw, well the last thing I saw was the back of everybody running away from me after I got hurt after about two years they kind of run from me. Cause I was in angry mode still. I think I lasted in angry mode for about four years. And so nobody, nothing. So I built my life. And I built it up and built it up and four or five years it started to go better and better. And it started a snowball since then.

    Dealing With Anger

    Bill 18:43

    You know the angry face. That’s interesting. Who were you angry at the was it somebody was it something what was it?

    Gary 18:53

    I was angry well, in my case I was attacked. So there was two people that attacked me so I had somebody to be angry with. I had friend to have had strokes and they’re saying it shouldn’t have happened. You know, they’re angry at God they’re angry at life they’re angry at everybody around them that they’re angry at a person.

    Gary 19:14

    Hell, some people are angry at me because I had three brain injuries and they only had one and they’re feel a little worse than I am. So you’re in pain and you’re frustrated. And you do lash out. Because the first thing is you can’t understand why you’re feeling so bloody angry.

    Gary 19:33

    You can’t understand why everything is upseting because this is a whole new brain in here. This is a whole new way of thinking and it’s all new. I mean, if a three year old throws a tantrum people go oh well you know, they throw tantrums. I’m only 12, 13 next year, I’m a teenager God forbid I feel like the first time I went through that one either. ooh nasty.

    Bill 19:58

    Okay, I just got that your humor is wittier than mine. So you’re only 12 because you’re kind of starting again from that new version of yourself after the injury. And, you’re learning about your brain again, and you’re kind of learning how to navigate everything. And I get it. That makes sense.

    Gary 20:19

    I was I spoke in the Irish Parliament supercommittee education, employment, and house committees all in just one big super committee. And I introduced myself and I said that I’m six years old, oh I’m 54 years old, depending on how you look at it. Just me, as I am now is four years old, the body and the sickness 54.

    Gary 20:54

    And that’s what it is, because what are you, what you think you are, what you feeling you are inside your head. And what people need is to you that you project and what you say and what you feel. But when the thing that does all that the brain gets cobbled about a bit shaken and not stored, new neural pathways though, parts die parts get damaged.

    Gary 21:23

    So it’s not the same brain anymore. So if it’s not the same brain, you’re not the same person. There’s a lot of you still there. But there’s bits done. There’s new neural paths, like between my fourth and few cat scans. My neuropsychologist explained it to me.

    Gary 21:39

    So she said, I can show you but you won’t understand it. Between my fourth and second CAT scans, which was 12 hours apart, there was new neural pathways being formed by my brain. The brain is very selfish, it wants to take and it wants to work. So I give my brain every opportunity to fix to set to make new neural pathways to do more.

    Gary 22:05

    I’m constantly doing cognitive exercises, doing mindfulness doing CBT you know, all sorts of things that I’ve got done over the years, to constantly keep my brain active, and to try and make it as fast and as sharp as possible. So you know, I try and keep myself brain fit.

    Bill 22:25

    Yeah, I love what you said you do. CBT. You do mindfulness, you do everything that you can to keep your brain changing, and growing, and getting better. I love the sound of that. You don’t look like somebody who does mindfulness though. Because on the internet, people that do mindfulness look way different than you man, you know.

    Gary 22:55

    You see, that’s the other thing. One size doesn’t fit all. I’ve never fit in any of those. I do little snippets. I take little bits that I can use with the process. And I put it into my own, the doctor said to me when I was coming out of recovery in the first two weeks, 16 days in the hospital, he said to me look before, some doctors will tell you six months, some doctors 12 months, some doctors will push it two years so many even say three years.

    Gary 23:25

    You won’t know where you’re going to be till you’re that far along. He says I don’t believe that, he says before six months are important before years are important, you will reach milestones and your therapy will plateau at stages but never ever stopped working at your recovery.

    Gary 23:43

    And I took what he said and I’ve okay admittedly in COVID I couldn’t. I mean, we have severe lockdowns in Ireland for 18 months. I left this flat to go shopping. My Google map thing is about I mean, my steps I did 300 steps around the little flat over here so like it’s, that’s been my life for the last 18 months.

    Bill 24:07

    So what you’re saying to me is, you’re 12 years past the injury. And what you’re telling me is, you’re still actually it’s in the front of your mind to do things, to continue the recovery to continue healing to continue working your brain still in the front of your mind.

    Bill 24:27

    And what you just said was because of COVID you found that difficult to continue doing that people who are having strokes now are saying how hard it is to get access to services. And they are 12 months in and they really need it and you’re 12 years away, and there’s no doubt you need it but you’re not at that acute stage you don’t really you don’t miss out like they are in that real acute phase.

    Gary 24:53

    The quality of the medical system over here to HSS is if you have a stroke, the hospital side of it, the initial recovery side of it is great. It’s the long term rehabilitation services. Now, I’m a client of Headway Ireland, I’m a proud client of Headway Ireland. they saved my life two or three times at this stage.

    Gary 24:53

    And at the moment, they had to close down the day services where out of all those services and they had to put them online, which people found difficult and zoom at the time wasn’t great a system or the easiest system to work with, it’s gotten much better. And and it’s the service the support wasn’t there.

    Bill 25:40

    What is it like Gary?

    Gary 25:43

    Headway Ireland is a brain injury support services, they provide the support services for the government for the health service, They’re a service provider for the health service, for the Irish health department. So we don’t go to a hospital. They don’t do the cognitive training or all of that stuff I’m on a cognitive rehabilitation program at the moment with my neuropsychologist.

    Recovery During Lockdown

    Gary 26:17

    Because I needed it because we knew locking down was easy. It was unlocking was gonna be the hard part. See lockeding down, I did years ago when I got hurt. I stopped going out I stopped seeing people I couldn’t do anything I wanted to do yeah, I did that well, years ago.

    Gary 26:39

    A lot of the things, it was easy to pull myself back into the wrapped into my own little bubble. But the last time I came out of my little bubble was very hard. So I knew this was gonna be difficult. So that’s what I’m doing at the moment with my neuropsychologist, we’re working with where I’m going wrong, where I’m going, right, why am I going wrong? Why am I getting this wrong? Why am I getting this right? It’s constant work. You can’t give up you can’t stop trying because if you do, you switch off.

    Bill 27:09

    You know, I’ve not spoken to anybody. And maybe it’s just a lack of asking the right question, but I haven’t spoken to anyone who’s 12 years out and still seeing a neuropsychologist.

    Gary 27:24

    Why shouldn’t I? You know, that’s the way I look at it. Funny thing is I met her when she was in training. So I’ve known her for 10 years now, she’s great but that’s where the support is needed. Because I walk into Headway headquarters down the road, in black hole square, and it’s not just about what they say to me or what I do.

    Gary 27:59

    I might go in and sit there at the men’s shed and just drink tea and slag people with love. Often that’s what I do, but it’s Headway the building gives me a hug. I don’t have to be Gary Kearney disability advocate. I don’t have to be Gary Kearney radio host. I don’t have to be Gary Kearney. I’m just Gary.

    Gary 28:20

    And I can have a bad brain day and not be paranoid. I can be having a bad day or a good day. And they’ll be happy for me they’ll still be talking to me whether I’m having a bad brain day or good so it’s the one place in the world that I can breathe out and not have to try and present myself as a more able person than I actually am.

    Bill 28:47

    Is that what led you to that point where you just said before you said that they saved your life a couple of times like, did they did you really get to that point where it got that serious?

    Gary 29:00

    I wasn’t gonna commit suicide, but I was going to end up dead because I wasn’t taking care of myself. I was taking risks. I was drinking heavily. And, I wasn’t caring for myself. And there’s other things you’re not supposed to do when you’ve got brain injuries and I was doing them all, because I didn’t care.

    Gary 29:24

    I lost everything. You know, I rang them up I said I’m at the bottom of my rope and I’m on a piece of string and I really need help. Everything I touched, I’ve lost my job. I’ve lost my friends, I’ve lost my family, I’ve lost some if not most of my family, I lost my life savings. I lost everything. I was just about to become homeless.

    Gary 29:50

    So I was just gone, It wasn’t I was gonna try and I don’t quit. Well, I was living too recklessly, I was living so recklessly because I didn’t care about myself.

    Bill 30:09

    Was that part of the anger?

    Gary 30:12

    Yeah, part of the anger, I was angry at myself for not doing better than I’ve done which is God knows, how often do we beat ourselves up over about, you know, certain goals, our brain lets us down or we forget something and we beat ourselves up again.

    Gary 30:27

    And it was like a flash. Until one day I said, why am I still beating myself up? I’m helping to sods that did this to me in the first place, I’m mad. That’s the only thing I thought I was going insane as well. Because I couldn’t express myself. Oh, that’s called aphasia. That’s okay. This is what you do. You mean, this is normal?

    Gary 30:53

    That’s why I love my neuropsychologist, because she put me in, I have a lot of different issues. Well, I wouldn’t have them extreme as a lot of people. But my whole brain I had massive sub cranial pressure, and they couldn’t release it. So I had a head like the size of a mellon, and my eyes were full of blood. And I was like, my brain was being squished down with neck and all sorts of stuff.

    Gary 31:20

    So all of my brain in different different stages was getting serious pressure on gray matter and white matter was getting damaged and all sorts of stuff. So you know, you go to your fourth classes, you now have brain injuries, welcome to brain injury club, this is a brain, this is a skull, and then they open it and they show you all the bits and you know, it’s great.

    Gary 31:52

    And then they give you a list which tells you which parts of the brain does what and what does which and if you’ve got a problem just and then you match them with your own brain parts that you’ve got damaged. And you go that makes sense. I couldn’t because I don’t know I go to different parts all over the place.

    Gary 32:15

    But when I met Elaine, she said to me, Well, this is what he just did. She did the neuro psych assessment, which I of course took as a test and attacked. supposed to take eight hours. I did it in three and a half. Well, I didn’t know. I just went for it. And she went through it and she went to the top neuropsychologist, she explained it they came down and told me and I swore I told him that wasn’t true.

    Gary 32:45

    They diagnosed me with ADHD 47 and a half. Now looking back on it, she then proceeded to read my life backwards to me how long my relationships were jobs were friends were family were everything she read my whole life completely backwards. And so with everything that happened, they said your unique brain chemistry and brain set from your ADHD may have probably has something to do with why you’re still here because you shouldn’t be.

    Gary 33:17

    But your brain was fairly odd in the first place. So, you know, that’s how you survived we think but we can’t be sure, you can never be sure with brain injuries, you know that, again, my surgeon Connor, he said to me, Gary, we know more about the dark side of the moon that we do about the human brain.

    Like No Other

    Gary 33:41

    And it’s just, you know, we can work with life hearts, we can work a little bit with live brains. But we can’t do it like we can the rest of the body. Because once your brain is dead, it’s dead, you can’t see how it works. You’re mapping and you’re doing everything.

    Bill 33:58

    That’s a profound statement actually. Because they can dissect the heart and see what happens in there, how it’s made valves, they can see all of that and they can see the damage to a valve or to an aorta or wherever but you are right once the brain stops working, there’s nothing to see because it still looks the same as it did when it was working.

    Bill 34:21

    And those little bits of cells, they’re not like any other part of the body so that for the first time ever makes sense to me now as to why the medical research in this space is still so what do we call it? So early on like they’re still, we got hardly nothing we know what certain things do but.

    Gary 34:52

    Barack Obama before he left he set up a team in the US called Brain and he called it man’s Final Frontier our own brains 30 billion they’re gonna invest over the next 20 years. And I thought that was great because spinal injuries, only became a big issue after world war two and then Vietnam.

    Gary 35:20

    Amputees was World War Two spinal injuries were World War Two, but particularly in the US after Vietnam. And now with the last few wars, it’s all traumatic brain injuries. And so many of us has trauma, billions and billions of dollars of traumatic brain injury at understanding it.

    Gary 35:40

    And it’s getting better. I mean, I might want to have a stroke, my mother died of a stroke. All my uncles on her side of the family died of stroke, some of my cousins on that side of the family died of stroke we’re genetically, my sister found out she got a test that we are genetically susceptible to strokes. So I had a traumatic brain injury because I couldn’t follow the rest.

    Gary 36:07

    The advances being made are great. But I reckon that we’re the best people in the world to teach people about brain injuries. And to help doctors understand this more when we tell them what’s wrong, what’s right, what’s working, what’s not working. We’re the only guinea pigs they’ve got.

    Gary 36:28

    But we’re the experts because we live it. He can tell me that this neuron’s doing that and that neurons do that and I can tell them that but actually, I don’t know what we’re doing so but they’re having a fight at the moment, because I’ve got terrible pain right here.

    Gary 36:41

    I can’t feel that I’m getting stressed out because of this, boy that’s why I like neuropsychologist because they can say, well, that could be this and they’ll work it out with and we’ll work out my triggers. Like I’ve done to develop more triggers as time goes on.

    Gary 37:00

    That’s why I have a support service as time goes on. Because you don’t recover from brain injuries. you survive, and you carry on. And it’s a constant. It’s a never ending process. It’s not like your leg can heal. The brain doesn’t heal, you don’t get better from brain injury. The brain doesn’t grow back. It changes and adapts and does whatever it has to keep itself functioning.

    Bill 37:29

    It adapts. I love that. That’s exactly what it does. That’s what neuroplasticity plasticity is. It’s just adapting it’s like humans when I’m not sure where we emerged from or which part or which part of the planet we’re on and what that was like, but we’ve adapted to be able to live in the snow, you know, in the coldest conditions in the hottest conditions. In the wettest conditions in most humid condition we’ve adapted to be able to survive everywhere. And that’s what the brian tries to do it tries to adapt and survive under duress under any circumstances whatsoever.

    Gary 38:04

    The brain is the most selfish organ in the body. Because it’s it I encounter I have me and I have the brain my subconscious. I just need to consciously wants to do things, but the subconscious mind is not having none of it. So I’ll make deals I say, Okay, look, let me get all this tool.

    Gary 38:22

    And then you can talk me down for a week if you want to do say, Well what he did, I said look, there was a French pop over, right, I don’t know if you know potholing where they climbed down with holes in the ground. And they didn’t have them caves and other sort of suffering. And this friend potholder went down with his famous set of caves.

    Gary 38:43

    He got lost, he tried to find his way out, and he couldn’t so he laid down and he laid down besides water. So he could at least keep hydrated. And she later on he later on he later freezin called like total darkness and he later turkey two days later I think it was they found him and his brain was still working.

    Gary 39:10

    He was complete muscle wasting. The brain has taken all of the energy it took down each part of his body one after the other afternoon or to keep whatever energy that but the body was keeping to keep itself alive. It was actually starting to eat the heart muscle to keep the child from live keep taking the energy that should have been counted the hack to keep itself alive.

    Gary 39:35

    Now he got better and he got he recovered and all the rest. But like that’s what the brain the brain wants to look after itself. So I try and give it every opportunity. I try to feed it as much as it wants to be fair, I might try and make it work just you know you check exercise the more you exercise the fitter you get. I find the more I push myself, the more I try mentally to do things I get a little bit better now.

    Bill 40:07

    But you’re not perfect. You’re not perfect at it either, are you?

    Gary 40:10

    No God. People say, well, you’re so great. I said every morning I wake up, I think, great. What do I do next? I said yeah when I wake up. You get out of bed? I don’t, why not? Because I can’t remember. I have to think about what I’m doing. Everything I do, I have to think about it before I do it.

    Gary 40:33

    If I’m going somewhere, I have to have a plan on how to get there. But because I’m so conscious of things going wrong and aware when things are going wrong, I have three different ways to get there and three different ways to get home. I have multiple setups and backups, somebody said belt and braces I said gaffa tape string and everything else I can think of I plan for things to go wrong. So when they do I don’t freak out.

    Bill 41:02

    So when when did you become interested in disability support and being an advocate in that space because I see a couple of hashtags in that background there. You got #disabilityGE2020.

    Gary 41:22

    GE2020 was a general election. It was a general and local elections and general elections. We use it for both. And Make Way Day is on the 24th of September. It was we started in Dublin but now it’s across the entire country. And it’s about keeping the footpaths clear, it’s about keeping the footpath accessible.

    Gary 41:45

    It’s about not parking on footpaths, cutting hedges it’s about disability access in the in the urban realm I’ve since learned the last one, that one that one there.

    Bill 42:03

    #purplelights 19.

    Purple Lights 19


    Gary 42:06
    Now that’s very special. Purple Lights 19 was my idea. Friend of mine said building was going purple on December the third for un International Day of Persons with Disabilities. I didn’t know we had day talked so if they can go purple. So I have a tendency I just throw it into the back of my head going into this the answer is there I just can’t draw it out like I used to like I was known as the brain because somebody say Gary watch this they go that’s that what will we do when get that or we were there and we did this.

    Gary 42:46

    Gone right that’s short term memory problem and the long term and medium term are good. But the retrieval system is very bad. It’s like when I once had a had just for brain of a filing system it’s now a big manual filing system that I’ve thrown with hundreds of stairs so it can take some time for the answer to come in.

    Gary 43:10

    So throw the Idea into the back of my head and I let it bounce around in there for a while and it’ll come to me so Purple Lights was why can’t I do this? Why can’t they do this? How can they do this? See change not why can’t why they don’t but how can they? why will they? How can I get them to?

    Gary 43:32

    And with about a month to go three weeks I decided to start ringing people, so I rang the national concert hall in Dublin then I rang Dublin city council and I disability federation of Ireland were mentioned started pushing it and pushing it to the college in Dublin I got the Bank of Ireland and college brain which is the same opposite declutter and we started getting bits and bobs and soon it started to get a bit life was a great success because we have a thing called The Rock of Cashel.

    Bill 44:16

    Let me just paint a picture i’ve just Googled it the Rock of Cashel is an amazing old Gothic building at the very top of some kind of a hill or something right? And it’s sensational brick solid you know it’s man it’s what we see in you know those movies about you know, William Wallace or somebody like that.

    Gary 44:47

    It’s large heritage site and I got them to turn it purple.

    Bill 44:51

    Wow. So yeah, they lit it up with lights.

    Gary 44:55

    They have lights there that they can light it up and they do light it up for Patrick’s Day for Pride, for different things but I never knew about it. The group themselves found out contacted disability federation of Ireland I said do you mind if we light up purple?

    Gary 45:12

    So they rang me and said Gary The Rock of Cashel wants to light purple I said whoever wants to light up purple can light up purple this is great they lit up The Rock of Cashel, and that was amazing. It was on the Nine O’Clock News to six o’clock news the main news broadcasts in Ireland.

    Gary 45:28

    There was purple lights, the celebration of UN International Day of Persons with Disabilities a world first The Rock of Cashel was lit up and I did it. A brain injured guy from Dublin. And it was exciting, and you know, like I said I was 47 years old. I was traveling on the scrapheap I just did sort of hang around till I die and I refused to do that.

    Gary 46:05

    And I’ve gone on and I’ve lit The Rock of Cashel purple and Cork City Council, Limerick Galway all over the country, lit in purple, the Irish Embassy in London in purple. I’m hopefully trying to get the Polish embassy or the English embassy in Poland, because the ambassador is a cerebral palsy and survivor person, and he lit up the British Embassy I lit the British Embassy in Dublin purple. They’re big things for a working class lad for cooperation house to be going it’s not a certain thing I’d be expected to do.

    Bill 46:43

    They are brilliant things to do to achieve. But also the underlying cause is really benefiting from this. So how does it help the cause the disability advocacy cause? When you do that, what does it actually do? What does it change? What does it create?

    Gary 47:05

    Purple Lights did, when I’d ask people to turn things purple, I put it in this way. I say look, you light up green for Patrick’s Day. You light up rainbow for pride. So you light up purple for people with disabilities. It’s the same thing. What do you mean? I said we’re 20% of the community.

    Gary 47:27

    We’re asking you to celebrate the day that is designated our UN International Day. And people will ask you why everything’s turned in purple? It’s access it’s an awareness campaign. It gets people thinking, why is everything purple, it gets in the newspapers, it gets to the TV, it gets on the radio, especially on my show.

    Gary 47:51

    They’ve gone very heavy on a show. But people other presenters will go hey folks everything’s turning purple, companies say boy, how was it? I didn’t know. And they’re becoming aware then of people with disabilities. And it gives you the chance to say look, you help us with corporate life? Could you help us? Did you know this? Could you support this? Or could you help this group brings them into it without the sympathy vibe.

    Gary 48:24

    These poor sods, you know, God bless them, you know, you have to help them. They’re disabled, you know, none of that. It’s not the Oh, look at us, we’re helping you disabled, like, you know, the companies go out and paint a few walls and they all come out they get the T shirts, and everybody’s there.

    Gary 48:40

    There’s photographs for the staff magazine that nobody ever thinks will ever go till the next year when they do in the workplace. And you’d say, Well, what would this it’s getting to the end at the top level for two more years. And that’s what we need this morning.

    Gary 48:55

    We need jobs. When you tell us we need education, we need support. And we get it in at the top level. And that trickles down and then people in the staff are saying why we don’t work with this. It’s because of this. Oh, that’s a great idea. Yeah, I’d love to help.

    Gary 49:11

    And they may have people in their family or disciple they may be disabled themselves and struggling to stay afloat because they’ll forget especially with loss. We hide in plain sight people will have brain injuries and I can come people that are not brain damaged that they’re not disabled because they’re embarrassed by it.

    Gary 49:32

    Like I said, I came out with purple lights turns everything purple. Like Patrick’s Day turns everything green all over the world. So if you imagine if the entire world turn purple on UN International Day disabled people every day, every day us celebrating us as a people as a community. And not like the Paralympics, oh look they’re superstars because they can do this.

    Gary 49:59

    No the person going down the road with a guide dog or with a long cane or in a wheelchair with cerebral palsy or with brain injuries especially with brain injuries. And I’m biased. And we have to try and live to a standard of able life the people don’t understand that I explain it as I’m working at 150% of what I should be working at just to look reasonably okay in an abled world where in headway, I could go the same way when you’re around people with disabilities.

    Gary 50:36

    You don’t have to try and not be so disabled to make the abled people feel uncomfortable because to get comfortable with it, you know that they get guilty and feel bad and that they want to help people that they don’t want to help you because you to try and help with the problem. And so because coffee shop like I try and get rid of all that.

    Gary 50:57

    I said, Look, if I’m having a bad day, I’ll tell you, if you want to know ask when somebody will say any if somebody asked you answer it, tell them the truth. Because they’ll appreciate it. Because they will appreciate it because they have to because they asked the question. Don’t hide don’t be afraid. I stopped being afraid of being a person with disabilities. I stopped being afraid of admitting that I’ll be in the middle of a show and I’ll forget the name I’ll forget something and I’ll go blah blah.

    Gary 51:43

    Well sorry for that’s an aphasia mode the word has just left the building. All the way home as I’m talking. My brain is gonna crack a clapper clapper trying to figure out where I was, what I meant to say and how I can get back to it. And I get back to it and I carry up. What I don’t hide it anymore. I don’t try and get the studio, the engineers to quote it, match it and do it. You know, make it seamless.

    Gary 52:08

    I’m not seemless. I don’t want to be seamless. And I want people to see my mistakes. I want people to see me fall on my ass. Because it’s human. And they have this sort of image of us is either poor sympathetic victims are disability part. Where it’s their superstars, look at them they can do anything we’re not we’re people you know, with not special needs but different needs. Purple Lights is a way of introducing them to 20% of the community. They don’t know how to get you to think about it a bit more. And awareness works like that.

    Bill 52:50

    I’m looking at the images on Google. All you have to do is type purple lights. 19 and you get a whole bunch of images of the event and you’re standing in front of a bus.

    Gary 53:02

    Haha, yeah. My dad used to drive and Dublin was right. And they wrapped one in purple for me, they wrapped a buss they did it two years in a row I guess we’re going for 3rd one this year. Yeah, they wrapped a giant double decker bus in purple that drove around the city for seven months, and would have been seen by millions and millions of people celebrating UN International Day of persons with disabilities.

    Bill 53:31

    And it’s massive the buses massive the riding is massive International Day of persons with disability. I mean, it is, a sensational thing to see because buses are on the road all day every day. People get on them, they get in them. They sit behind them, they sit next to them in their car. And it’s pretty amazing. I can see there’s a distant picture of another building that has been lit in purple from across a river. I see that.

    Gary 54:07

    That’s I think that one’s Limerick. And we got Dublin county council City Hall, the Mansion House, we got Cork City Hall. We’ve got colleges all over the place. And the corporate community got behind us and beautiful their buildings all the way down the river was purple.

    Gary 54:28

    Some of the bridges were purple. And it makes people think of the thinking about people with disabilities not as simply and not as heroes just as people. And that’s that’s half the battle is to take us. It’s like the social model of disability rather than the medical model that you’re right about it just thinking of us as people because that’s what we are for people.

    Bill 54:53

    So the International Day of persons with disability is the third of December every year is that right? I’ve never heard of it, Gary, I can’t believe I’ve never heard of it. I know that the Stroke Foundation in Australia has a purple day or something like that. But it’s not really that well associated to the day that you describe it. I’m not sure if it’s on the right on the same day. That’s really strange.

    Gary 55:23

    The group I used to group by I picked it up I picked a lot of the information above is an Australian group. I can’t remember the name I’ll send it to you when I find it. And because UN have a very, official, but typical Australian they got passed over and created a fun day and created very important messages but with a little bit of kick to it.

    Gary 55:52

    And as you know, somebody said to me, Gary, you’re not Australian, but you sound very Australian. I said, Well, actually my sister lives there for 30 years. I said but no it’s the attitude. It’s a real, you know, get giddy and get it done and have fun while you’re doing it.

    Bill 56:07

    I’m looking here. There are some other days that are purple days, and one of them is Make Purple for stroke. Yeah, so it seems to have been used in that way. And it’s that is the that’s the Stroke Association. I think that’s a UK organization.

    Gary 56:27

    Purple is a particular color for neurological conditions, right. Or purple is the overall color for disability. That’s why I have the purple lights because I am an ex roadie. I’m an ex technician, whatever you want to call Stage and Stage Manager. So I knew the simplest thing to do was to turn lights purple with LEDs.

    Gary 56:54

    I mean, the light just there. It’s a simple matter of getting an LED light in your room turn in to purple. I think the color change light bulbs by the LED is two strips of LED is around the TV and you’re car or whatever you want to be flashing, turning purple. And that’s all I’m asking people to do. And people going in except they were like when they get to DPO my old job. The most historic building in Ireland, the Dublin Post Office where the rebellion was started in 1916. turned purple.

    Bill 57:33

    I think you’re right. The purple is the color that’s used in a lot of those spaces. The Epilepsy Foundation has the 15th of June, it is a purple day as well. So okay, I’m starting to see the purple is being used generally, across those types of organizations. So it’s good to see. It’s really good to see. So mate youre doing great work. Tell me that work. Seems to also be a part of what you do on the radio show. What radio show is that? How long have you been doing the radio show?

    Viva Vox Ireland


    Gary 58:10
    I’ve been doing the radio show. Technically, for four years, I’ve about 160 shows. So I had to stop for 40 or 50 shows at the start of the pandemic because I couldn’t get my head around it be quite honest. I had it. I tried to do two of them on zoom and they failed.

    Gary 58:26

    And you know what it’s like when you try something that’s very important to you and you fail, you run away from it, and they’ll come here ever again. You don’t really tear up doing that again. That didn’t work. That’s my brain injury. It’s my brain injury. It’s my fault. I’m a terrible person and boy am I trying to do you know, downright horrible spiral.

    Gary 58:44

    So I fought my way back out and I started again, I’ve been doing the show now. I have about 160 shows Don Weaver walks the disability show what a difference on 103 point two diversity FM. It’s available on ww that Dublin City FM w it’s every Tuesday afternoon at 12:30am. So it’d be half midnight for us. And polished. All of the shows are online.

    Gary 59:13

    All of the all the shows are a podcast. We were on SoundCloud. We’re now on a new one. But they’re all available on the website. And my plan would direct the show was to advocate and educate. And there’s a short one that I didn’t say at the time because a lot of people will take it Oprah but also to entertain.

    Gary 59:35

    Because if people if you have a show about disabilities, it’s only a part of pitty. And I didn’t want that. And it’s not a show for people with disabilities. It’s a show for people. It’s a show about people. It’s a show about people with disabilities. Sometimes our people like today’s show was with Dr. Suzanne who’s the head of transport infrastructure Ireland safety.

    Gary 1:00:05

    She was talking about shared space and shared cycle lanes and cycling two foot, you know, things that affect our day to day stuff. And she was very positive about where I’m positioned myself on the issues. And it’s about educating people about the issues that we have that they don’t notice, as you’re trying everybody Commedia doors, and you can do this.

    Gary 1:00:29

    You don’t have to drive everywhere, as some of us do. Oh, everybody can walk 500 meters, no, everybody cannot walk 500 meters. And this is what I’m trying to get out there. But rather than no shouting, screaming, I try and bring it into the conversation. And the shot was is I’m crowded there somewhere, I won an award for it.

    Gary 1:00:52

    And the fourth year, which was really good. And it’s all about trying to educate people about the reality of being people with disabilities and living in the disabled world. Because it’s not, it’s like I said, all the time, we are strangers and enable loud, because it’s not designed for it. What if you listen to us, and do what we ask, you will design a better world for everybody.

    Bill 1:01:24

    You can service everybody, rather than just the majority of the population, the conversation of ableism is something that’s really big at the moment. And people are starting to understand the difference between, you know, having a city or a public transport system organized for people who are on two feet and walking normally, and all that type of thing.

    Accessibility For Disability


    Bill 1:01:48
    And how that limits a lot of the population, a lot of people from actually actively participating in that community in Melbourne, where I live, and I’m certain it’s like that in most other cities in Australia, I haven’t been to all of them, but I’ve been to a few of them.

    Bill 1:02:03

    If you’re in a wheelchair, you there’s nothing stopping you from getting anywhere, not on a bus, not on a tram, not on a train. And right now, they’re still finishing off a project to raise all the platforms of the trams, so that people can just roll up and roll into the tram with their wheelchair.

    Bill 1:02:24

    It’s the most amazing thing abled people are getting pissed off about it because it’s taking away car spots, and it’s decreasing the width of the road. But they’re not understanding the massive difference that it’s making to people who are in wheelchairs. And I didn’t really I took it for granted in Melbourne because it’s been like that for many, many years.

    Bill 1:02:45

    All the footpaths, or have have ramps that go down. There’s no curb stopping you from driving your wheelchair off of that. And I went to Greece after my after my brain injury after my strokes. And when I was in Greece, it was just after my surgery, so I had to spend some time in a wheelchair and I realized how difficult it was to get around some places.

    Bill 1:03:15

    But when I went to Greece, I realized that in Athens, if you’re in a wheelchair, you’re pretty much stuck at home, you’ve got nowhere to go, nothing to do because you can’t get out of a building, let alone use your wheelchair on a footpath and down the road. It’s just not possible. There’s even trees planted in the middle of a footpath in Athens.

    Bill 1:03:37

    And, most buildings. Absolutely. Most buildings not even one or two. I didn’t even say one or two have ramp access to the elevator of their building to the left of the building, not not a single one of them that I saw. And I was there when my cousin broke her foot. And she had to climb up on her but she had to sit down and drag herself up with a freshly plastered foot.

    Bill 1:04:07

    She had to get up about 15 steps to get into the elevator. And then I had to go into her apartment, grab a chair with wheels, like a computer chair and somehow get her onto that chair, roll her into the elevator and then roll her into her apartment where she spent the majority of her six weeks recovery. Because getting out of that building was impossible.

    Bill 1:04:33

    So I love what you’re doing. I love the way that you’re raising awareness. I love the fact that this conversation is happening and if the city of Dublin needs an example of how to go about planning a city around all the population, not just the abled people, all they’ve got to do is do one of those, you know, public paid flights to Melbourne and have a look around.

    Gary 1:05:01

    Well, I was hoping to get to where to Belvoir but a car Stein went, by the way when one of the pandemic, so you never know, we might be able to meet up yet. But we were the first city in the world to have fully accessible public transport. And we see very good things like that. But we have some very bad things as well.

    Gary 1:05:27

    So it’s trying to keep the gourd or keep the process moving forward. I started to say this thing, and it’s driving planners, absolutely not practical, not crazy. I said, that’s the way you have to design your designing pretty, not practical, and gone mad. But that’s what it is.

    Gary 1:05:50

    But it’s up to us as people to Okay, sometimes you have to kick off and complain and more female in your local counseling, your local MP or local senator, whatever, when something’s bad, don’t kick up and scream, don’t ignore just right off and complain about it. It only takes five minutes.

    Gary 1:06:11

    But if they get enough complaints, they start to listen, because politicians aren’t gonna know what the problem is, for a person with a stroke. what a person is with limited mobility, to transport infrastructure, you’re avoiding suit available in Germany, to gransport.

    Gary 1:06:31

    What is simulate old age, but one of the simulations is a simulated stroke. And roads loaded stroke was the picture with the arm with the false with the mobility problems of all side. And even they’ve got five different pairs of glasses that chose different types of blindness, or visual impairment or different types of visual impairments.

    Gary 1:06:55

    As she said, she said, I’m gonna put all the senior planners into this to the left, and she wrecked her, she’s going to polish students and make them understand. And it’s not simply that will create empathy.

    Gary 1:07:10

    That’s not going to create sympathy they’re going to only ever realize and that’s the most wonderful word you’ll ever hear what as an advocate, is when somebody goes, I never realized Yeah, because that means you’ve got Yeah, now understanding of last.

    Bill 1:07:26

    Gary, thank you, mate. I really love that man. Look, we have struggled through heaps of technical issues. And before we have another one, I’m going to wrap it up. But I really want to thank you for reaching out for the work that you do for the, for overcoming your own adversity, for continuing your recovery for going out of your way to continue recovering.

    Bill 1:07:49

    And I think you’re a great example of what’s possible, what’s possible to be really shitty and low, and in a dark place after a brain injury. And then it’s also possible to come out of that, and make a massive difference to other people’s lives. At the same time making a massive difference to your life. Because I feel like you doing this stuff is giving you purpose and meaning.

    A Reminder for Gary Kearney


    Gary 1:08:15
    That’s it completely that wall there is not about ego, that’s to remind me when I’m having a bad day that I make a difference that I count. Because we’ve all been in that hole of self pity and self hate.

    Gary 1:08:28

    Where nobody cares. I wouldn’t matter if I wasn’t here. I’m useless, I’m this, you know, that self hate, that’s to remind me I make a difference what you’ve said to me, has really got to me, and I really appreciate that.

    Gary 1:08:42

    That’s what makes doing what I do worthwhile. I’m helping other people. And that in turn helps me. It gives me a reason to get up and to go. And knowing that I’m helping somebody is the greatest feeling in the world for me.

    Bill 1:08:58

    On that note, thanks so much for being on the podcast.

    Gary 1:09:02

    My pleasure.

    Bill 1:09:04

    Well, thanks so much for joining me on today’s recovery aftershock podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:09:24

    This road is both physically and mentally challenging from reclaiming your independence, to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave the hospital, you no longer have medical professionals on tap.

    Bill 1:09:41

    I know for me it was as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you’re not alone. And there is a better way to navigate your recovery and build a fulfilling future that you love.

    Bill 1:09:58

    I’ve created an inclusive and supportive, accessible membership community called recovery after stroke. This all in one support and resource program is designed to help you take your health into your own hands. This is your guide walk through every step in your journey from reducing fatigue, to strengthening your brain health, to overcoming anxiety and more. To find out more, and to join the community, just head to recoveryafterstroke.com see you on the next episode.

    Intro 1:10:29

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:10:46

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:11:03

    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 1:11:24

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:11:48

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post Finding Purpose After Brain Injury – Gary Kearney appeared first on Recovery After Stroke.

    1 hr 13 min
  • Stroke Recovery And The Gut-Brain – Dr. Michelle Eisenmann

    Michelle Eisenmann is a chiropractic doctor and has a master’s degree in clinical neurology. In this conversation, you will get an insight into why gut health matters in brain health.

    Socials:

    https://www.instagram.com/thebrainfluencer/

    Highlights

    02:15 Introduction

    05:15 From Chiropractic to Neurology
    07:32 Functional Neurology
    13:40 The Brain and Gut Connection
    21:26 The Gut-Brain
    29:19 Gut Functions
    37:14 The Advertisements
    47:15 What Is Leaky Brain?
    57:42 Unhealthy Consumption
    1:05:07 Neuroplasticity
    1:12:10 The Great Influencers

    Transcription:

    Bill 0:00

    The nutritional advice was, you know, I think it was, drink eight glasses of water a day. And it’s okay if some of those eight glasses are coffee or tea, because they liquid and therefore part of that eight glasses. I made you laugh why did you laugh so much?

    Michelle 0:21

    Because I just remember hearing that myself as well. And, you know, we know that coffee caffeine can dehydrate as well. So, it’s just funny that that was, you know, one thing that we all talked about you know drink coffee like for hydration,

    Bill 0:38

    It sounded like a good idea at the time. And the thing about coffee, it was probably a coffee company that gave us that information, drink eight glasses of water a day and make sure one of them’s a cup of coffee or a cup of tea. I’m pretty sure that’s how we were educated it was the corporation’s educating us.

    Intro 0:58

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:11

    Hello and welcome to recovery after stroke a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:22

    I’m your host three times stroke survivor Bill Gasiamis. After my own life was turned upside down and I went from being an active father that’s being stuck in hospital. I knew if I wanted to get back to the life I loved before my recovery was up to me.

    Bill 1:38

    After years of researching and discovering alone how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:54

    If you enjoy this episode and want more resources, accessible training and a hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers, this is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence.

    Introduction


    Bill 2:15
    Head to recoveryafterstroke.com To find out more after this podcast. But for now let’s dive in to today’s episode. This is Episode 158. And my guest today is chiropractic Dr. Michelle Eisenmann.

    Bill 2:30

    In this episode, we’ll be talking about the link between gut health and brain health and how a healthy gut is important in stroke recovery. Dr. Michelle Eisenmann welcome to the podcast.

    Michelle 2:44

    Hi, thanks for having me.

    Bill 2:45

    Oh my God, thank you for being here. Your Instagram is one of my favorite channels. And we’re gonna get into why in a little while. But before we talk about what made me contact you. Tell me a little bit about the work that you do.

    Michelle 3:02

    Yes, so I am currently a chiropractor in the great state of Texas. I have a master’s degree in clinical neurology. And I have fellowship studies also with traumatic brain injury patients.

    Michelle 3:15

    I work with the military population. Mainly I’ve worked with civilians as well. But I focus a lot of my work on blast injury, traumatic brain injury patients, I’ve worked with post stroke as well and vestibular and dizziness.

    Michelle 3:30

    And now I have started and that I do that all clinically in a clinical setting. But I have now also started a side business for myself, called brain charge. And I have created that business because I noticed that there’s a big gap in between people going to different clinics, whether they be traditional medicine or whether they be more alternative types of medicine.

    Michelle 4:00

    That you don’t really get a handbook after a brain injury as to how to reintegrate back into life. And quality of life really suffers from this. And although a lot of people have the sentiment of being very happy with their symptoms, decreasing after experience or experiencing certain treatments, we don’t really have that transition to going back home.

    Michelle 4:26

    And so with that side business that I call brain charge, on purpose as a brain in charge, you are in charge of your brain. I do teach and I coach people on how to do habits, sleep, you know any supplements that they need toxins, exposure, exercise pretty much anything more lifestyle oriented so that people can get a good handle on themselves. And then just keep moving on and improving with quality of life but that’s a big gap that I saw in in every single aspect of healthcare.

    Bill 5:04

    So you’re a chiropractor? And then you did a master’s in neurology.

    Michelle 5:13

    Correct?

    From Chiropractic to Neurology


    Bill 5:15
    And then how did you have the time to do all of that kind of stuff? I mean that’s too much study for one person. What led you from chiropractic to neurology, I kind of get the link, but tell me why you moved from that path to neurology?

    Michelle 5:34

    That’s a great question. When I was younger, when I was in college, I shadowed a neurologist and physiatrist. Here in Dallas, Texas, they were very reputable. And I, my desire to help people with brain injuries really come from my mom.

    Michelle 5:55

    She is a three time cancer survivor. Chemotherapy did a number on her and her brain too as many other cancer survivors. I have a grandfather that served in the military and had blast injury exposures.

    Michelle 6:11

    And so I really wanted to help people like them improve quality of life. As I was shadowing these doctors, I thought that my only option was to become a neurologist or a physiatrist.

    Michelle 6:25

    And they sat me down one day, and they said, Hey, just to let you know, if I could retrude my profession I would. That was pretty shocking to me. At the time, I was a little immature.

    Michelle 6:37

    So I didn’t think that that was coming from a loving perspective, I immediately thought that I was like, Oh, they just don’t want me to be successful. But after I started listening a little bit more, I started realizing that there are different ways to help people, and there’s not just one singular way.

    Michelle 6:58

    And so from there, I always knew that I wanted to go into neuroscience, I always knew I loved neurology. But that’s how I found a chiropractic. I started finding people that were doing functional neurology and these functional aspects of neuroscience that really were in tuned with quality of life, which is what I saw a decrease and from my mom, from my grandfather and myself after some experiences I’ve had as well. And that’s how I went into chiropractic really.

    Funcional Neurology For Brain Health

    Bill 7:32

    Okay. So tell me about what Functional Neurology is, that’s a new term for a lot of people. So give us an explanation on what that is.

    Michelle 7:44

    So there is a lot of back and forth on the name functional neurology, some people have a good connotation or bad connotation with it, I can tell you what it means to me. It’s not just clinical neurology, functional neurology is seeing different symptoms and tracing them back to the function of the brain in the function associated in that brain area localization.

    Michelle 8:09

    Really good example of this is eye movements. So I know a lot of people are very in tune when it comes to speech or eye movements in these specific functions that are actually tied to specific areas of the brain. And so as a functional neurologist or clinical neurologist, however you want to name it, if you’re more on the rehabilitation side of neurology, something that you do a lot is pinpoint symptoms, two functions of the brain and find ways to rehab it while using neuroplasticity as a basis and a foundation for it.

    Bill 8:45

    Okay, that seems logical. One of the biggest issues I think that people face is that they have a brain injury, they don’t know what causes their brain injury. So a lot of people also don’t know that they can go and see a neuro psychologist, and at that neuro psychologist, appointment or meeting, they can get diagnosed with specifically what the cognitive impairments are, what the actual issues are.

    Bill 9:11

    And therefore, what are they related to, but often in that, at least in my experience with neuro psych assessment in Australia, the issue was that even though I had the evaluation, the report was handed over to, say, a rehabilitation hospital where they rehabilitated me but they never had the conversation with me.

    Bill 9:37

    Which was, these are the results, and it says that the issue with your speech is coming from this part of the brain, which has been affected and this is how it has been affected. And this is how we can retrain that to get it back, for example. There was none of that deep dive into the challenges that I’m facing and why I’m facing them and how to recover them.

    Bill 10:00

    So I like that functional approach that you’re talking about. I think it’s really useful, especially for caregivers who need to understand what’s going on with their loved one and don’t understand why they’re doing something or how something is happening and how they’re going to retrain it.

    Bill 10:21

    They know that they’ve got to do rehab, but they don’t know the purpose of rehab. They don’t know what’s behind it. And that’s, I think, another conversation that would perhaps motivate people to rehabilitate (inaudible) or their speech in a more nuanced, fine tuned kind of way I think, feels like it’s more informative.

    Michelle 10:49

    Yeah. So that’s funny that you say that I actually really encourage caregivers, spouses, any kind of person involved, to be a part of the clinical aspect, or this more lifestyle driven online business I have, because I always say this to my clients and patients like knowledge equals understanding. And when you understand you can actually properly heal.

    Michelle 11:12

    And I do agree with you that most of this aspect of funcional neurology really comes a lot with understanding how the brain functions, and just doing things for it. Because there’s no monopoly on health, there’s no monopoly on brain health. Everyone has a brain. I don’t know anyone that doesn’t have one. So everyone can learn how to use their brain, and especially in the brain injury community that has a specific interest in optimizing their brain function.

    Bill 11:42

    My brother used to tell me, I didn’t have a brain. And I had to have brain surgery to prove to him that I did.

    Michelle 11:52

    Sounds like a sibling thing though.

    Bill 11:54

    Yeah, he’s wrong. You know, it’s not true Harry, I’ve got a brain. He was older than me. So it made sense that he would say that I didn’t have a braid like it was, you know, standard stuff.

    Michelle 12:10

    So got like the younger brother stuff.

    Bill 12:12

    Yeah, yeah, I showed him, let me tell you. Okay, I’m loving that. So one of the big challenges, that people face is they don’t, up until recently there hasn’t been a lot of information about actually, what the brain is actually linked to.

    Bill 12:35

    And it’s on your head, it’s discussed in medicine, as a specialty. You know, we’re going to speak to the neurologist about your brain, we’re going to speak to a cardiologist about the heart, the gastroenterologist about gut. And it’s kind of been separated from the rest of the body, the head in a way, which I think has created misunderstanding in the general population about how they’re all linked.

    Bill 13:07

    Now the brain is linked to the rest of the body via the vagus nerve, and via the spine and the cerebral spinal fluid, and all those things that are necessary for the brain to actually take part in running things in our body.

    Bill 13:25

    I call it the supercomputer, it has the responsibility to modulate and run and send signals and messages and receive signals and messages and process them and do all sorts of things.

    The Brain and Gut Connection


    Bill 13:40
    And one of the things that I noticed immediately, after I became unwell with my brain, was that my bowels started to really change the way that they were working I had a real problem with going to the toilet or not being able to go to the toilet or having bloating conditions and all that kind of stuff.

    Bill 14:10

    What’s the link between the gut and the head and why does the gut get impacted after a stroke? And after brain surgery? How is that a thing what goes on there because I’m sure there’s a lot of people that have had gastrointestinal issues and haven’t realized that they’re connected.

    Bill 14:32

    And that I haven’t also realized that having a bad gut situation or a difficult gut situation or an unhealthy gut is going to decrease the neurological recovery after an event like a stroke. Can we dive into that?

    Michelle 14:51

    100% you say something really key by the way, I don’t know if you’ve ever heard of Dr. Lisa Moscone. She’s a fantastic doctor that is studying women’s brains after menopause, specifically, and she actually said something similar to that people have this understanding that the brain is like, in a box like a black box that’s separated from the rest of the body because it’s just centered in the skull.

    Michelle 15:20

    But that’s actually not true. It is kind of like a supercomputer. It does communicate with everything. That is one of the things that I actually learned heavily in my chiropractic school is that the spinal cord and the nerves that come from the brain do communicate with the rest of the body.

    Michelle 15:22

    It’s one of the things that got me really interested in it. But on the side note of that, you are correct in the sense that you also mentioned the vagus nerve, there is a specific link in between your brain and your gut. And there is an actual physical link.

    Intro 15:55

    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, or doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 16:19

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called the seven questions to ask your doctor about your stroke.

    Intro 16:39

    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.

    Michelle 16:58

    In between your central nervous system and your enteric nervous system, which is more than ever system that regulates gut motility and ghrelin secretion to tell you if you’re satiated or not, permeability is something that can happen as well. One of the things that I want to dive into a little bit more is the area from which that nerve actually comes out of is called the brainstem.

    Michelle 17:23

    One of the things that happens often in strokes and brain injuries is first if you have a traumatic brain injury, whether it be like a physical one, whether it be translational or rotational, there’s usually always an issue in the brainstem, always. Also, if you have a stroke, sometimes you have a lot of brainstem involvement.

    Michelle 17:46

    Even if it may be hemispheric. There is something called maybe butchering this but called diastasis or diathesis, one of those two, I’ve heard both terms. I don’t know, I knew two languages, but maybe not that one. The issue with that is that if one area of the brain is damaged, the other area that has a connection to it may also suffer damage, because it’s no longer supplying information to that area as a connection, as feedback.

    Bill 18:20

    I’m going to feel that I’m going to interrupt there because that’s a really key important point. So what you’re saying is there’s communication pathways through the vagus nerve, which is it’s called the vagus nerve, because I think in Latin that represents the wandering nerve, because it goes to all parts of the body, to all the organs to the eyes, to every aspect of the body.

    Bill 18:45

    So what happens is, there’s damage up in the brain, the communication pathways, via the vagus nerve, are interrupted, and the fact that one of those pathways of communication to that specific organ or part of the body gets interrupted, and because that other on the other side that information can’t get through. That impacts that organ.

    Michelle 19:12

    Correct. Very, very correct. And, that happens within the brain itself. And with that communication highway as well. This is what how we were talking earlier about eye movements with similar function in that areas of the brain that are involved in eye movement are then having issues and difficulties potentially with the nerve or the muscles that supplies to move them.

    Michelle 19:36

    It’s the same school of thought when you’re talking about the gut. Now, here’s the super interesting part about it. That is very different from eye movement, when we’re talking about the gut. There is bi directional feedback in between your brain and the gut.

    Michelle 19:50

    Which means and I love saying this if your brain is on fire your guts on fire, if your guts on fire, your brain is on fire, I actually took a little bit of notes here on the side from specific studies that talk about this just to quote a few, but it says, you know, most studies on gastrointestinal dysfunction after a TBI focused on the upper gastrointestinal tract, including delayed gastric emptying, and esophageal reflux.

    Michelle 20:19

    We also talk about how we show decreased motility in the small intestine, decreased intestinal contractility activity, which can actually be an issue with voiding. And something else that I wanted to talk about is, the microbiome is now being observed through the gut, to activate the vagus nerve back, as well.

    Michelle 20:45

    So I know that’s a concept that, at first, it’s difficult to understand, because we’re thinking microbiome, we’re thinking more chemical orientation of things versus nerve, which feels more physical orientation of things. But that is where these worlds collide.

    Michelle 21:02

    And so then you have inflammation, which is just a fancy word to say we have an immune response in our body, that can be propagated through different pathogens, toxins, micro organisms, mold, toxicity, parasites that can then influence back up through the vagus nerve and give incorrect or correct feedback to the brain.

    The Gut Brain

    Bill 21:26

    Yeah, it makes complete sense to me, I’ve spent a lot of time since about 2012 looking into this and learning about it and seeing what I can find online about it. And we’re starting to talk, the medical community starting to talk about the gut as the second brain.

    Bill 21:42

    And a lot of people don’t realize that the gut has neurons, it has about the same amount of neurons as a dog’s as a cat’s brain, which is several 100 million. And therefore, if you just take that little bit of information and get curious about what could that mean, to me, when I heard that what it means is it has a level of intelligence.

    Bill 22:03

    And that’s the part that refers back to those comments that we make in our conversations such as you know, I’ve got butterflies in my stomach, or I followed my gut instinct, or I didn’t have the guts to do this. And in those moments of conversation, if you ever catch yourself talking about your gut, in your conversation, it would be good to step back and go, Okay, why am I saying that?

    Bill 22:35

    What does that actually mean? What am I trying to elicit here? Is it some kind of a spell that I was under? How did I get to that point where I’m using part of my body to describe in a sentence that describes how I was feeling like, the other conversation that we have sometimes is, I’ll wear my heart on my sleeve, we say stuff like that I followed my heart.

    Bill 23:01

    But what does that even mean? Did the heart guy for a walk? And you thought you’d follow it? What does that mean? So I love the fact that science is moving in that path of describing the gut as more than just a tube where stuff goes in and poop comes out. It’s not that at all, it is such a bad it had been given such a bad rep, you know, all these years.

    Bill 23:29

    But the reality is, is that what’s in your gastrointestinal tract is in fact, not in your body, because it’s supposed to be extracting nutrients, and getting rid of the waste. But the permeability, which is something you touched on a little bit ago, actually is starting to allow some toxins in some ways to enter into the body causing challenges like rheumatoid arthritis, causing challenges, like, all sorts of things.

    Bill 24:04

    And, a path to healing some of those conditions is healing the gut. At the same time, if you’re healing your gut, you’re actually healing your brain. So let’s talk about what permeability is, what happens to the gut that makes it permeable. How that also interferes with those signals. And let’s give people a bit of an understanding of why it’s important to take nutrition seriously. And to stop eating certain foods after stroke or after some kind of a neurological condition.

    Michelle 24:42

    Yeah, so that’s great. That’s what I feel like a lot of people have heard the term leaky gut. So I love and hate those words. Love the fact that it’s becoming common knowledge, hate the fact that sometimes we have an association to it that may be incorrect.

    Michelle 25:03

    So what I want people to understand is that if you look at my fingers right now, and you think of them as the internal lining of your gut, this is the protective barrier that you have in between your absorption of good nutrients and the toxins that can then flow out.

    Michelle 25:23

    Well, we have these tight junctions that are regulated by, you know, different channels and tight junctions literally in between every single cell that forms the gut lining, and things like and I’m not anti medication, just let you know, but things like consistent and overuse of antibiotics, potential birth control, that processed foods, high fructose corn syrup, all of these undigestible types of materials, even products we use in our skin.

    Bill 26:00

    Gluten.

    Michelle 26:01

    Yeah, that can all really affect our gut lining. And especially after a brain injury, which the bi-directional feedback through the vagus nerve may not be going as well, that influences our gut microbiome. Now, what really harming it so now we’re seeing how lifestyle factors and brain injury factors can cause just a perfect storm into these tight junctions to start opening.

    Michelle 26:27

    And these zonulin channels are no longer very good. And that’s why it’s called leaky gut because things can leak through. And what happens is, as things leak through that they’re not supposed to, the most common ones talked about are gluten and casein, for dairy and wheat, which is why it’s usually recommended to avoid and may not be a forever thing for everyone.

    Michelle 26:51

    But some people depending on your antibody response, like TPO antibodies or surveiller antibodies, you may need to that makes an immune response. And then you start seeing things like abdominal distension, then you start seeing things like constipation, diarrhea, now it no longer becomes just a secular brain, you know RA, eye issue, brain issue, now all of a sudden, we have a connection and with everything, lo and behold, everything works together.

    Bill 27:25

    The whole system gets impacted and thrown out of position. And, and if anyone has ever had a gut issue, and let’s just say it’s a diarrhea incident, you can’t think straight or you’re thinking about during that incident is to make sure that you’re somewhere where you can extract that stuff out of your body.

    Bill 27:46

    And hopefully that is a toilet somewhere where, you know, it’s safe to do so and private, right. But if you’re out in public, and you’ve got that going on, and you know, you need to find the toilet and you can’t get that think about how hard it is to actually operate your brain in any capacity in any other way other than to find some way to extract that stuff from the body without you know, having to stop somewhere inappropriate to do that.

    Bill 28:22

    When the gut is involved in dealing with an issue bloating or constipation or something like that, it impacts the way the brain works. It impacts what you can do. It impacts how you think it impacts your booth, it impacts everything. And it’s a real great way to counteract mood dysfunction to counteract energy levels to support all the things that we need to get better after a neurological event.

    Bill 28:56

    And people miss it. They miss it because of that conversation that we had earlier where head is separated etc. And they don’t understand deeply that it’s connected with the head and the heart through the vagus nerve. And they don’t understand any of those connections, and they don’t understand how the gut helps to support the immune system.

    Gut Funcions

    Bill 29:19

    And it also helps to create neurotransmitters, the ones that we need in our head to feel good, you know, like dopamine and serotonin. So can we discuss a little bit about some of the things that the gut does that people have been associated with good health and good mood and good neurological function? What are some of its core tasks that it does other than take food processor, get the nutrients out and then expel the waste?

    Michelle 29:56

    Yeah, so that’s, that’s great. I mean, one of the things But I really already touched on that, for me is the most important one is the aid in being able to create neurotransmitters. That’s honestly neurotransmitters is a fancy word for saying hormones. They’re just a different area of the body so we have named them something else.

    Michelle 30:18

    But being able to have that ability of being satiated, of being happy of maintaining energy levels, when it comes to mitochondrial health, I think is the number one thing that we can talk about our guts specifically about your mitochondria are really the building blocks of everything that we do.

    Michelle 30:37

    And I don’t think people understand how important constipation diarrhea specifically are as a sign of mitochondrial health, that comes directly from gut health in itself. So might, what people need to understand is that in order for your nerve cells to actually function properly, they need to have specific things, one of them being glucose, which comes from an absorption of nutrients.

    Michelle 31:05

    So I think that and I was talking to someone about this the other day, too, there has just been such a mess marketing model out there in the world, that for a specific point in given time, I didn’t even realize, and I, you know, have done this, I used to drink a cherry coke a day.

    Michelle 31:24

    And I used to not really understand how that really affected me because it just was a normal thing. I never thought about what I was doing to my gut. Now that I understand the difference into it, I can actually feed it things to give me proper mitochondrial function, which is the number one thing other than a neuro transmitters.

    Michelle 31:43

    But I think people need to understand how important it is to feed yourself healthy. Because if you don’t have good mitochondrial function that immediately goes into brain fog immediately goes into fatigue, immune susceptibility, autoimmune disorders, and so on really.

    Bill 32:01

    Yeah. You drink Cherry Coke, used to drink a Cherry Coke a day, one can of coke a day. And two, and three and four and one liter and whatever, you know, it didn’t ever stop, it was just the go to it was always the thing that we got. And I haven’t had one for I don’t know how many years but if I drink a little bit, every once in a while, and I’m talking about a little bit, I feel it entering my body.

    Bill 32:31

    Like I feel it entering my blood, my veins, I can actually feel it coming through. Which is something that I find really strange and bizarre, because I never noticed that before. But now I noticed it if I have a high fructose drink or sugary meal or something like that, I immediately notice it and I can feel it going into my brain. It’s such a strange thing to notice.

    Michelle 32:58

    That’s my favorite part about this stuff, though. It’s, you don’t know until you know, you really don’t. And your brain will not understand what life is like without it. Because I hear that often too, with people that leave gluten for a long time that do have gluten sensitivity or non celiac gluten sensitivity.

    Michelle 33:19

    They say well, now I eat gluten. And that’s a big issue that I have noticed to push back on. Well, now I gluten and now I would get symptoms I didn’t used to get before. No, no, you were chronically chronically inflamed before. And now your brain knows what that side of health is of less inflammation. So now you notice the difference between it.

    Bill 33:42

    That’s such a profound statement that you just made. If I took a piece of sticky tape and stuck it on your forehead, and it was there for 20 years, it would just become part of your forehead, you wouldn’t know the difference. It was always there. And you would look at it and go yeah, it’s always been there. I mean, if you haven’t noticed it, or it doesn’t bother me, it doesn’t get in the way.

    Bill 34:05

    And then one day you take it off, and that part of your skin is a different color to the other part of your skin because it’s never seen the sun. And then you notice it. And that’s basically what it’s like. And it’s like, well, there’s a bit of skin under that piece of tape. What is that doing there? It’s always been there and I’ve never noticed that before?

    Bill 34:25

    That’s the kind of analogy that I use to explain that. It just takes a moment to remove something. And then you start to see what’s really going on underneath what is really happening. And with food sensitivities is exactly what you said. I had food sensitivities my entire life. I just didn’t know that there were food sensitivities because my mum described that differently.

    Bill 34:49

    She called me sensitive. She said my stomach is a little bit off that type of thing. She always downplayed it because they that my parents never wanted to conclude that their food, which was all healthy, my mum never ate out and she never made us let us eat out and any of us suppose she wanted to conclude that her food was healthy food.

    Bill 35:12

    And it was quote unquote, healthy. But some of those foods didn’t agree with me and one of them was gluten. 100% didn’t agree with me and wheat used to bloat me. And then on top of that, I used to drink sugary, high fructose corn syrup drinks. And I was just throwing so much stuff in there that were causing that were running amuck and causing problems that I couldn’t pinpoint which one it was because I never really paid attention to the order in which a symptom occurred.

    Bill 35:45

    I didn’t realize that our I had a really soft, fluffy white piece of bread. And then I had a coke. And then something happened. I always blamed it to the thing I had before that, because I never saw bread as problematic when it was looked at and thought this thing could be impacting my health.

    Bill 36:05

    How do you conclude that every time I’ve ever heard somebody speak about bread, though I spoken about it in an ad, which was about how amazing it was, it was as soft as anything. And, you know, you could have eaten a sandwich or you could toasted or you could do this with it, and how can this thing be terrible for me?

    Bill 36:26

    But in fact, it was and removing them from my diet, not only decrease the inflammation and help me lose weight, it also led me to switch my brain on my brain so I call it like it probably switched on. And it was one of the key things that I think progressed my recovery.

    Bill 36:44

    Now, when I say progress, my recovery, it didn’t make some of my deficits go away. But it made the rest of my brain operate to be able to overcome those deficits, where the deficits are still there. They’re noticeable. But they are not at the front of my mind as being oh my Lord. I have a deficit, I have a deficit. Thank you. I see you’re clapping. Tell me why you’re clapping with those statements?

    The Advertisements

    Michelle 37:14

    Because this is exactly why I started the online business that I’m doing. Because people and I don’t mean this to dog on people at all. If anything, I think people are the victims in this situation. I think large corporations tend to include different advertisements that also provide misinformation.

    Michelle 37:34

    That brainwash Pun intended people literally into thinking that health and lifestyle are secular. And that’s, not true. And for you to say, hey, it didn’t tear me. But it gave me the ability, something that’s in my control, to do. And that’s an empowering, that is so empowering, to know that you were able to do something for yourself to be able to overcome certain aspects of your life.

    Michelle 38:06

    Well, that’s what I was saying in the beginning of the podcast too is that some people don’t realize that after they leave a clinic or a treatment, or a rehab facility or a hospital, what they do at home, can really severely undo or worsen some other factors, or it can really give them that boost that you just perfectly explained right there.

    Bill 38:29

    They don’t realize that they’re going to undo the good and go back to the harm that they were creating for the body themselves in the past, but now, it’s actually more serious harm that you’re creating, because you’re intervening in the recovery of your brain health in a negative way.

    Bill 38:49

    And you have to be responsible for the part that you play, and that’s the only way you take control back of your life. And it’s not only what you consume food wise, it’s also what you consume. on social media. It’s what you consume, on the television on the news.

    Bill 39:06

    Because if you’re consuming things that make you stressed, and stress you out, that is also impacting your body in a negative way, and it’s impacting your brain in a negative way. And it’s impacting your gut in a negative way. We know that stress impacts the gut, if you’re having a very stressful moment, I can ask you to describe how you feeling in the gut and you’ll say it’s tight, it’s full of knots, all sorts of things.

    Bill 39:29

    So we have to become involved. After brain surgery. We already physically evolved because of this thing that happened in our head. But then we’re also going to become spiritually emotionally and more knowledgeable. We have to shift all at the same time but not together.

    Bill 39:57

    But one thing at a time. The thing that you’re Become aware of right now, the thing that triggered you in this podcast episode might be the one thing that you just start off, do that focus on that, learn about that, understand how that’s impacting you, and then take the next thing that comes up in your journey.

    Bill 40:15

    And then focus on that. And slowly, slowly, you add all those little bits of pieces of the puzzle together. And now instead of creating an environment that can cause harm, you’re creating an environment that can cause wellness.

    Bill 40:28

    And that’s what I did, I was responsible for part of my issue with my head, which was a bleed from an arteriovenous malformation, I was responsible for part of that, because my lifestyle didn’t support keeping that faulty blood vessel as healthy as possible for as long as possible.

    Bill 40:47

    My lifestyle included smoking and drinking, and included a lot of stress and consuming foods that were not appropriate for good health. So shifting that and doing the opposite of those things meant that now I was actually contributing to good health. And I was supporting my brain from healing.

    Bill 41:08

    And I was supporting my blood vessels, so that they’re all strong and healthy for as long as I possibly can. Because I didn’t want to be responsible again, in the future, or play a part in another bleed or another health condition, I got away with this one, a beauty. As far as I’m concerned, I could have been dead, but I’m not. So I’m not going to be the one who contributes to my disease, or my ill health on my death in the future. That’s the way I see it.

    Michelle 41:38

    I just I love that, that is 100%, exactly how I feel about it to you just you have a part to play in it. And why not? If it’s under your control who you going to trust with your help yourself. So that’s really good.

    Bill 41:54

    And it’s under your control. Because you can do it from home, it doesn’t cost anything, all you have to do is transform the type of food that you eat and understand that what you’re doing is nourishing your body. It’s like a car, we put terrible fuel in our car, it’s not going to get the result that we want, it’s going to stop working, and it’s not going it’s going to blow smoke, and it’s not going to sound right.

    Bill 42:13

    So we have to operate that car with the fuel that was intended to go into that car. So that operates optimally. And then through the year, we have to replace things we have to replace the things that were out. But most importantly we have to change the oil. If we don’t do that, it won’t run optimally.

    Bill 42:30

    So we spend in Australia, anywhere between, you know, 20 and $150,000, or $200,000 on a car. And no one I know has spent $200,000 on their health. You know, and they have a great looking car, and they get it washed every week and they get it polished and they clean the tires and the wheels, and if it gets damaged, they get it repaired and all sorts of things.

    Bill 42:59

    And I don’t know anyone that spent $200,000 on their health, except the people that are sick. And now have got no other option but to spend money that they would rather have put into a car. And I’m one of those people because just being at home for the seven or eight years before I was able to fully get back into work.

    Bill 43:21

    If I’m being conservative, if I’m being conservative, it cost me half a million dollars. Just being at home. And that’s not what it would have cost if I was in a medical system like you guys have in America, which meant that the insurance runs out a certain point in time. And then I’m stuck with a massive bill. I’m lucky in that part. So I can’t believe how expensive it is to actually have a neurological issue.

    Michelle 43:53

    It is, it’s so expensive to to get to that part. Which is why I love when people like you were talking about the things that you can do at home because I mean you sunlight, if there’s some like outside that UV rays, those are good for you those, you know what you decide to put in your mouth, like how much water you’re drinking.

    Michelle 44:18

    And I know it can be super overwhelming because they’re I love talking about the Simplicity’s and the complexity. I said what are you doing what Simplicity’s and the complexities of brain injury because very simple things lead to help in very complex situation, which is where some of that miss connect and some of that urgency doesn’t really come through to sometimes.

    Michelle 44:45

    I feel like that people look at it and they’re very overwhelmed, there’s environmental toxins, and mold, and you know, the physical side of the brain injury and the micro organisms and the food and the toxins in it. There’s just so much But if you really take a step back and look at it, you can do simple changes that make big effects. Now, where I see that some people can be successful with it depends on their level of urgency that they feel to enact on those simple things.

    Bill 45:17

    Yep, I feel that some people feel also powerless to actually change because they don’t know where to start. So knowing where to start for them, is the most important thing. And like you said, the start place could be I’m going to the sun in the morning, and I’m sitting there for 10 or 15 minutes every day.

    Bill 45:34

    That’s it, not long enough to get cooked by the sun, but just long enough to feel the warmth, and to take in those ultraviolet rays through your eyes, because they’re going to support your sleep. For one, they’re going to support your vitamin D levels, which is a hormone for two.

    Bill 45:51

    So if you just know that going into the sun helps you sleep, and then also helps your vitamin D levels. That’s it, that’s an intervention, you’re really doing more than most people. So congratulations. That’s all you need to do. It takes you however long it takes you to get outside, and then 15 minutes in the sun on a daily basis and you’re done.

    Bill 46:12

    We, also spoke about auto immune responses because of leaky gut. But there’s also such a thing as leaky brain. And let’s talk a little bit about leaky brain. And, and then also see if we can explain how it’s linked to leaky gut and what the two things are and how to resolve both of those things.

    Bill 46:34

    So I know that resolving leaky gut starts with the nutrition, taking out those inflammatory foods, taking out things that are not digestible, like gluten, decreasing the amount of sugar for me was also decreasing caffeine, it was also taking out alcohol. And it was also decreasing dairy or taking out dairy.

    Bill 46:56

    And when I say taking out we can swap a lot of those foods, so that people don’t feel like they’re missing out on for example, a coffee with their friends, if they used to drinking full fat, cow’s milk in their coffee, they might have an almond, decaf coffee.

    What Is Leaky Brain?

    Bill 47:15

    So that they can go through that process of having a coffee with their friend and in Melbourne, Australia. That is very, very important part of our culture, having coffee, and being with our friends. So you can swap things out. But how do we get to the point of healing the brain from leaky brain? And Firstly, what is leaky brain?

    Michelle 47:37

    Well, that’s actually very interesting that you say that, because I think there are two different kinds of leaky brain going around the world right now. So leaky brain can be an a.k.a also for cerebral spinal fluid leaking out of the brain as well. So not to confuse that with what I think you’re saying leaky brain being more of a blood brain barrier issue.

    Bill 48:02

    Thank you very much exactly what I was talking about. Yeah, the blood brain barrier being penetrated.

    Michelle 48:08

    Yes. so the issue with the blood brain barrier is that we’re starting to see and a lot of people are starting to realize that just how the gut can have permeability, the brain can also have permeability, and there was an old school of thought, to think that nothing could actually penetrate that fortress.

    Michelle 48:27

    That’s actually not true. So the same thing that happens with the gut when we’re talking about inflammation, and these inflammatory mediators and this inflammatory cascade and response, the same thing happens with the brain. And so we have these epithelial cells that are part that are connecting different neurons or nerve cells to different vasculature.

    Michelle 48:49

    And they can actually become permeable as well, leaving things to cross the blood brain barrier, whereas they usually normally don’t. And what I need people to understand is that it’s not only a physical response that can promote this blood brain barrier linking, it can also also be a chemical response, that you’re altering and inducing in your in your body.

    Michelle 49:14

    So there is a lot of talk and research about things like this, and we can go crazy, thinking about what leaks my brain? what doesn’t leak my brain? But if we’re gonna take a step back and really go into it and try to do the best thing for our brain is this. There’s only two real principles when it comes to food.

    Michelle 49:35

    It’s either inflammatory, or anti-inflammatory. Really, that’s it. So if you’re trying to help yourself, through the gut to help your brain, that’s a good way to do it. And also, if you’re trying to help yourself through the brain down to your gut, we need to ask how well are you breathing? What’s your oxygen intake? Are you exposed yourself to mycotoxins.

    Michelle 50:01

    Those are things that I can actually cross the blood brain barrier. You know, even certain things like different foods there are berries are actually known to cross the blood brain barrier without it being permeable or destructive, and can actually decrease oxidative stress in our brains.

    Michelle 50:19

    So that’s what I was saying more on, like the simplicity vs. the complexity, because these sound like really big words and really complex mechanisms. But we are designed really, to have everything influence us. And so what activities are you choosing to do is watching TV, like you said, going to be inflammatory or anti inflammatory?

    Michelle 50:45

    Or food inflammatory or anti inflammatory? Our aerobic capacity if you’re going to exercise? Is that exercise why are you doing the exercise? Are you doing it to check it off the list and say, I moved today? Or are you doing it with an intention behind it? And so intentionality comes a lot with with brain health.

    Bill 51:05

    Is a 40k. marathon supportive of your health or not supportive of your health? Yes, it’s a great thing to tick off and say that you did. And it’s a great personal achievement accomplishment. But at some point, perhaps it’s, you’re doing too many marathons per year, and it’s impacting your body in a negative way, whether it’s your joints, or whether it’s your muscles, I’m not sure what your tendons it potentially could be a negative thing.

    Bill 51:35

    Also, you spoke briefly about breathing is part of the breathing that you’re doing, including breathing in chemicals via a cigarette, is that an optimal way to support the brain? It’s definitely not. And we know that about cigarettes now. And also alcohol, I know that alcohol can interfere with the gut, the balance in the gut, because alcohol, just by its nature, it kills bacteria.

    Bill 52:04

    So if you put a lot of alcohol in your gut, you’re impacting the bacteria that’s in your gut, and you’re throwing the balance off, and then the gut balance, if it’s getting impacted by dairy at the same time, and if it’s getting impacted by gluten at the same time, well, it’s going to bounce back from three different types of things on a regular basis that are happening to it to put the balance out to throw the balance out.

    Bill 52:32

    So I love what you said that there’s two types of food, there’s either inflammatory food, or there’s anti inflammatory food. And there’s another little thing that people can do is they can do a little bit of research on a computer, and find out whether the food they’re eating is inflammatory, or anti-inflammatory.

    Bill 52:50

    And if it’s inflammatory, or has the tendency to create an inflammatory response, there could be something that you swap out for something that is not inflammatory. I previously interviewed a nutritionist and a performance coach, a husband and wife team.

    Bill 53:09

    And I called the interviews the fun five series. And in those interviews, we took out the fun five, and unfortunately, they are fun foods, but we had to take them out. And they are dairy, gluten, alcohol, caffeine, and sugar. And like you said at the beginning, because I really want to bring this back to the beginning part of the conversation was some of those things may be better if you took them out permanently.

    Bill 53:41

    Like no alcohol, in my opinion, okay, it’s just my opinion. So don’t want anyone to get annoyed about that. But some of them might be temporary, especially when you restore the balance, and you give your gut heaps of time to recover. And therefore you’re giving your brain heaps time to recover. I didn’t drink alcohol for at least I’m pretty sure was about two years minimum after my stroke.

    Bill 54:07

    And then I had another episode and what I’m talking about drink again, I only maybe drank a bottle of beer a year or something, you know, like I wasn’t really back at drinking, but I had a drink of alcohol. And then I had over three years I had all my bleeds and surgeries.

    Bill 54:25

    So I always reset every time something else happened, it always reset. So for a good five years, maybe I had a couple of bottles of beer in the whole amount of time. And I really noticed how it made me feel when I drank it. It made me feel like I was having a stroke.

    Bill 54:40

    So I started to associate this terrible feeling with it rather than it being good. And everyone else is enjoying it at the table. I’m drinking it and doing it just for them. And I’m not enjoying it and I’m feeling drunk after half a beer. And now I’m the joke of the table and I’m playing to say Hey guys, I’m already drunk, I’m on one drink one day, and I can’t do this anymore.

    Bill 55:05

    And I have to stop. And you know, they have a little bit of a giggle at me. But it’s the excuse that I play on so that I don’t have to drink anymore when I’m with my friends. Now, they know it’s linked to my brain, so that they’re not terrible friends, I try not to hang out with people who are going to give me a hard time for not drinking alcohol.

    Bill 55:24

    They know that it’s linked to my issue, my neurological challenges. So they kind of give me a break now. But it was a bit of retraining on their part, and also retraining on my part, so that I could actually make the decision to stop doing that. And then I knew that I had to have a conversation with them about the importance of me stopping and doing that, bring them on board with me.

    Bill 55:47

    So that they wouldn’t offer me drinks and then feel bad that I would say no to them. Because I don’t know why people get offended when you say no, I’m not drinking, I don’t get the whole concept. But some people take it as a what you’re not, I’m offering you a drink, you’re not going to take my drink, come on, let’s drink. I don’t get that.

    Michelle 56:09

    Some people don’t understand boundaries. And I think that after a brain injury, that’s the one number one thing you really need to be getting really good at is establishing boundaries in our relationships, to not to harm it, but really to just show them hey, this is where I’m at.

    Michelle 56:28

    You can come meet me where I am. And we can both be comfortable with everything. But yeah, people do get very upset when you don’t drink because I’m like that, too. I don’t really drink. I really don’t. It just in my personal opinion, it’s a lot of sugar.

    Michelle 56:47

    It’s a lot. It’s number one is a lot of sugar on dehydrated, after I drink it, it affects my cerebellum, I have issues with my balance already as it is, which then in turn can affect your autonomic nervous system. My heart rate goes like crazy and I have an aura ring that every time you take maybe a glass of something I’m recovering for the next week. So to me the risk does not outweigh the benefit.

    Bill 57:13

    Absolutely not we don’t realize the impact that it has. And of course we don’t because it’s like that sticky type. We used to do it so often that we didn’t associate the way that felt with a negative connotation. We just it was normal. That’s what happens when you drink. It makes you feel like that. And it was like, wow, okay, that doesn’t. We never, never jumped from that’s how it makes me feel to oh my God, that’s how it’s making me feel.

    Unhealthy Consumption And It’s Effects on Brain Health


    Bill 57:42
    I’m feeling different than I feel when I’m not drinking. And that never happened for me, I never had that conversation in my head. It’s interesting, the conversations I have in my head now that are Wow, really noticing that that is really impacting me. And I don’t want to feel that way anymore. I feel like a matter of control. And I put this thing in my mouth. And that’s making me feel out of control. So take control back for me was simple. Don’t put that thing in my mouth. Alcohol crosses the blood brain barrier very rapidly and easily, doesn’t it?

    Michelle 58:15

    Correct? Yeah. It does cross the blood brain barrier. And the effects that I think it has on some people are just not great for kinji cells on the cerebellum, for example, are not easily reconstructed, on like other nerve cells. And so if you specifically have an injury to the cerebellum, I highly recommend people to not do certain activities that will harm their cerebellum, like alcohol consumption, for example.

    Michelle 58:49

    But it does and it just decreases. You know, in tying it back to what we were talking about with the leaky brain and leaky gut. Alcohol specifically, not only does it also harm your microbiome, but it also can dehydrate you. So if you don’t already drink enough water per day, now you’re constipated.

    Michelle 59:10

    Now you have bad your body, your brain and your body are starving for water because our brain is what I think the statistic is around 80% average, made out of water. you’re starving yourself out of water, you’re drinking sugar or you’re screwing up your microbiome and you’re decreasing oxygenation to your breath.

    Bill 59:30

    Yep, I hear. I’m remembering now somebody that I heard in the past. The new nutritional advice was, you know, I think it was in a drink eight glasses of water a day. And it’s okay if some of those eight glasses are coffee or tea because they are liquid. And they are therefore part of that eight glasses. I made you laugh alot. Why did you have so much?

    Michelle 1:00:00

    Because I just remember hearing that myself as well. And, you know, we know that coffee caffeine can dehydrate, as well. So it’s just funny that that was, you know, one things that we all talked about about you drink coffee like for hydration.

    Bill 1:00:20

    It sounded like a good idea at the time.

    Michelle 1:00:23

    Yeah, I mean, I’m a coffee lover, I’m from Puerto Rico. So it’s a big cultural thing yes.

    Bill 1:00:32

    It sure is. And the thing about coffee, it was probably a coffee company that gave us that information and released that, drink eight glasses of water a day and make sure one of them’s a cup of coffee or a cup of tea. I’m pretty sure that’s how we were educated it was the corporation’s educating us on how amazing their cigarette was, or how, how amazing their inflammatory breakfast cereal was, and all that kind of stuff.

    Bill 1:01:02

    It’s hilarious that we take that information in the cheapest, most inefficient way for the most efficient way for us is we sit in front of a TV, we’ll let them program us. And then we resist, resist, resist the change the shift from what we were taught all these years from these advertising campaigns, we resist it, some people to the extent with to the extent where it ends up killing them, and food can kill us, as well as nourish us and keep us healthy.

    Bill 1:01:39

    We’ve seen what cigarettes can do. And I used to smoke. So I’m talking as an ex smoker. But my friend, one of my friends who was dead against that, but probably, you know, was the only one who had the guts to say so every time he saw me put a cigarette on my mouth to say that things are going to kill you one day.

    Bill 1:02:00

    And I was like, yeah I’ll worry about it then, he was saying that when I was in my 20s. And at 37, only 17 years later, that thing almost nearly contributed to killing me. And I didn’t realize it was going to come around so quickly. And I probably regret not listening to my wise 20 year old mate at the time, he never put one in his mouth and never considered putting one in his mouth.

    Bill 1:02:30

    But the cigarette ads that I saw the cool people smoke, let’s say we’re all hanging out a beaches or throwing a beach ball around, or they were with the sexy chicks. And it was like, this is the thing for me, this is what’s missing in my life to enhance my life to that level to make me feel sad, amazing. I was so stupid. But that’s alright, I forgive myself for that.

    Bill 1:02:58

    And I’m learning now in my 40s hopefully I’m going to become a little wiser. When I’ll be able to be around for longer, then, you know, 40 odd years, I have lost a couple of friends at the in their 40s. And at least three people that I know in their 40s. And all three of them was smokers.

    Bill 1:03:20

    And they had heart attacks. It’s a bit ridiculous that they’re not around simply because they picked up something and put it in their mouth. And I’m talking about cigarette because everyone understands that and nobody’s gonna say to me yet but cigarettes up as shown on some studies to improve health.

    Bill 1:03:41

    That’s kind of, we need to get to that point with those foods that are inflammatory where people know that know that. I am consuming that I do know it’s inflammatory. I’m doing it from my own free will rather than being programmed and trained by a corporation to consume something I shouldn’t be consuming.

    Bill 1:04:03

    So if I can encourage people to do anything is get curious about what is inflammatory. When we consume it and what isn’t inflammatory when we consume it. It that noninflammatory stuff. And just by doing that, and knowing nothing else, and not going into any time or effort to understand the complexity of what you and I just discussed.

    Bill 1:04:25

    Just do that. And you’ll be impacting your brain health, your gut health, your heart health, your mood, in a positive way, your sleep in a positive way. All these things. It seems so simple and counterintuitive. Why can’t we just be able to do it Doctor Eisnmann?

    Michelle 1:04:45

    Why we can’t do that. I really think it’s because of cultural beliefs. It’s about what we’re exposed to. As something that I really want to talk a little bit about is you said earlier something about you know the things we’re exposing ourselves to, when I go into deep thought I look to the bottom left.

    Neuroplasticity

    Michelle 1:05:07

    And what I need people to start visualizing in their brain is that every single time we expose ourselves visually auditory with any kind of sense, that creates a synaptic response in our brain that does create a synaptic response and that is neuroplasticity.

    Michelle 1:05:24

    Aeuroplasticity doesn’t care whether what your synaptic response is a good or a bad response. It just knows, hey, Michelle is exposing herself to this frequently with this amount of intensity, it means we need to create a neural pathway for it.

    Michelle 1:05:43

    And so that’s where I think that a lot of the issues come from is culturally, we’ve created, maybe passed down generationally on how we eat, how we do things, which creates a neural pathway response. And then what we’re exposing ourselves to, because like you said, I saw these commercials.

    Michelle 1:06:01

    And these were the cool guys, these were the guys that were doing had the chicks and all that stuff. That’s what was missing from my life. That then happened to you because of one exposure that happened to us from exposure to exposure to exposure to exposure, which is then why your brain has been recognizing, yes, in order for an association, happy faces missing link need to do this desire, dopamine reward, then you start doing the activity, reward, reward reward.

    Michelle 1:06:32

    But what people need to do also is take heart, that healthy foods can be really good to, you know, yeah, surround yourself with people that are wanting to create change in their lives. As opposed to if you are a person who is trying to combat brain injury, and you are not currently surrounded by a community or guidance right now, to help you with that you are setting yourself up for failure.

    Michelle 1:06:58

    Because everything is currently designed. Right now we’re not, I’m hopeful that that will change in the future. But it is currently not designed for brain health. And so what you’re exposing yourself, your brain will literally believe whatever you tell it or whatever it sees. So that’s why it’s so important to really be mindful as to choose as to what we expose ourselves to, because it will create a synaptic response.

    Bill 1:07:26

    It’s so powerful that it can override the feedback from my lungs when I was inhaling the cigarette, the feedback from my lungs when I was coughing when I was feeling lightheaded or terrible in the morning and had to clear mucus and all that kind of stuff out of my chest and my throat and all that type of thing. It was that strong that it over wrote that response.

    Bill 1:07:50

    Yeah, I know you’re coughing up a lung, but think about the chicks that you’re going to have. I know you’re coughing up a lung, but think about how good you’re going to look at the beach when you’re running around, throwing a beach ball around the place. It was such a weird thing that for more than 20 years I smoked.

    Bill 1:08:06

    By the time I got to the age of 37, I had smoked for more than half my life. And it was it was never once considered to be something that I needed to stop at all. It never once entered my mind. And we used to talk about it from time to time and i would say i in it. I’m not ready to stop yet. I’ll stop later on down the track. Anyway, I did stop later on down the track.

    Bill 1:08:29

    And I stopped for a very dramatic reason, and I never thought it would be that dramatic. The reason I stopped I thought I was just going to stop when I felt like when I had enough. But I wasn’t even being an avid fan myself at that point where I’d had enough. I love what you said about neurological pathways, and neuroplasticity because it’s so true. It’s whatever we focus on, we get.

    Bill 1:08:52

    So if we have behavioral patterns that keep us in a bad mood, if we have behavioral patterns that don’t support recovery, we’re implanting behavioral patterns that are going to make recovery in a better mood, harder and harder to achieve. And with somebody sometimes people hear about positive response to neuroplasticity, but there’s also negative neuroplasticity.

    Bill 1:09:19

    That’s how I describe it to people. And just be aware whether the plasticity that you’re creating is a positive version or a negative version. Similar foods are the foods inflammatory or non inflammatory. Now, not to say that you’re not going to, from time to time, create a negative neurological response by doing something two or three times but having awareness that I’m doing that, and that’s not a good outcome.

    Bill 1:09:47

    I don’t want to be doing that going into the future. Let me stop that now early on, so that it’s easy to stop and let me shift that behavior. So it’s easy now that I don’t have to worry about undoing that behavior later. So, this has been a fascinating conversation, it’s really lovely to get somebody on the podcast who deeply understand these topics and can speak to them.

    Bill 1:10:10

    I know we only touched the surface because these are not one hour topics. These are very deep dive type of discussions. But we’ve broken it down very simply so that at the end, we said, if you just go outside and get some sun, that’s going to get you a good response in your sleep, and your vitamin D levels, immediately 10 15 minutes in the sun. And then we also said, if you just learn which foods are inflammatory, and which are anti inflammatory to do that, you’re going to impact positively the whole system. Isn’t that amazing?

    Michelle 1:10:49

    Yeah, it can be just as simple as that. And then from there from some of these people, that feel okay, well, I do that already know, I already eat all the anti inflammatory foods, well, then that is just a stair step into working with someone to try to figure out a root cause for something. So for those people that may feel discouraged about that, because they feel like they’re already there. Just know that that is just the starting point. That’s not the end point.

    Bill 1:11:17

    That’s it. And you’re doing good work already, you’re supporting the person who’s going to help you take it to the next level. So on that note, where could people find out a little bit more about you or get in touch with you from?

    Michelle 1:11:31

    Yes, so honestly, right now, the best way to reach me is through my Instagram page. We talked a little bit about it. It’s The Brainfluencer. There’s a reason and a rhyme for that name. And I guess people are just going to have to go to my page to figure it out. But yeah, that’s the best way to reach me right now.

    Michelle 1:11:52

    I really use Instagram as a tool and a medium of communication with people. And until then, I’m working on a website, and I’m working on some other things to be a little bit more accessible. But as of right now, that has turned out to be one of the best tools I’ve ever had.

    The Great Influencers On Brain Health


    Bill 1:12:10
    Yeah, your influence your, your, your real call doctor is when you’re going to be influenced in the brain space. I mean, cuz the Kardashians have already got influencing people on that other stuff already done. So there’s no point doing that anymore. Your your Instagrams, really very cool, I’ll have the link so people can find that easier.

    Bill 1:12:34

    If they go to this episode on recoveryafterstroke.com. They’ll be able to get to your links, but you post some real simple things. You know, you’ve got a photo of the brain that changes itself by Norman Doidge.

    Michelle 1:12:48

    Great guy.

    Bill 1:12:50

    Yeah. Have you met Norman? You have well, I need you to help me meet him as well, hopefully online, but we’ll talk about that later. And then we can also you’ve also got another book out there, how to feed a brain. So one of my favorite authors, Dr. Datis Kharrazian , my absolute one of my most favorite authors, because he knows the link about thyroid disorders and brain health, brain fog, and I had a thyroid disorder, which was impacting my brain health and my brain fog after brain surgery.

    Bill 1:13:27

    And I thought that the fatigue was as a result of the brain surgery. And it had been 18 months or so. And we discovered that through his work, I discovered that in fact, the condition was a thyroid condition. And I went and got that resolved. And I decreased my level of fatigue.

    Bill 1:13:46

    So I was being impacted by fatigue by these two pathways, that brain injury and my thyroid at the same time. And the thyroid issue only became apparent after the brain issue. And Datis Kharrazian is an absolute genius in the way he describes things to simplify it down for people like me, who at the beginning of the journey, you don’t know the words and you don’t know how to absorb this information.

    Bill 1:14:14

    And I also see Dr. David Perlmutter’s name on that book, as well. Wow and Dr. David Perlmutter, was one of the first books I read, which was, I think he wrote Eat Fat Get Thin. Or was that Mark Hyman? Dr. David Perlmutter wrote Grain Brain.

    Michelle 1:14:37

    Grain Brain yeah, that’s the one he wrote.

    Bill 1:14:40

    Yeah. And, Dr. Mark Hyman wrote Eat Fat Get Thin. So just by going to your Insta page, people actually going to be able to see things there that are really helpful and beneficial tools that they can buy, have delivered to their home and if they’re reading kind they can read them if they have neurological problem.

    Bill 1:15:00

    They’ll find those books. So if they have reading issues, they’ll find those books on audio as well. I’m pretty sure they’ll be able to get them on Audible or something like that. And it’s a really great Instagram, it was what made me reach out to you because very few people post about the link between gut and brain.

    Bill 1:15:22

    And I think that’s the next place to take the conversation. It really needs to go there. I can’t stress how important it is. And on that note, I’m going to stop talking about it because we’ll be here forever. thank thank you so much for being on the podcast. I really appreciate you sharing your your knowledge with us.

    Michelle 1:15:43

    Yeah, I appreciate you here too. And honestly, I love talking to you. So that was really fun for me too.

    Bill 1:15:54

    Thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish there was just one place you could go to for resources, advice and support in your stroke recovery?

    Bill 1:16:05

    Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need. This road is both physically and mentally challenging. From reclaiming your independence to getting back to work, and to rebuilding your confidence and more.

    Bill 1:16:22

    Your symptoms don’t follow a rulebook and as soon as you leave the hospital, you no longer have the medical professionals on tap. I know for me It felt as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you’re not alone and there is a better way to navigate your recovery and build a fulfilling life that you love.

    Bill 1:16:44

    I’ve created an inclusive, supportive and accessible membership community called Recovery After Stroke. There’s only one support and resource program is designed to help you take your health into your own hands. This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety and more. To find out more and to join the community head to recoveryafterstroke.com See you next time.

    Intro 1:17:11

    Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:17:28

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:17:45

    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 1:18:05

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be, call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:18:30

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post Stroke Recovery And The Gut-Brain – Dr. Michelle Eisenmann appeared first on Recovery After Stroke.

    1 hr 20 min
  • Nerve Pain After Stroke – Luis Diaz

    Luis Diaz says that gang life in LA was worse than experiencing a stroke. His leg is in so much pain because of the neurological deficits that stroke caused, that he is seriously considering having his leg amputated.

    Socials:

    https://www.instagram.com/chito_wla/

    Highlights:

    02:13 Introduction

    06:05 Waking Up In a Pandemic
    10:21 Nerve Pain After Stroke
    20:05 Foot Infection
    26:19 Short-term Memory Issues
    30:56 The Gang Life
    40:01 Settling Down
    52:45 Acquired Mindset
    1:01:24 We All Want The Same Thing
    1:07:23 Stroke In The Middle of a Pandemic
    1:14:15 Taking Responsibility For Your Own Recovery

    Transcription:

    Luis 0:00

    My left side is my bad side. Yeah, that side is my leg is constantly on fire it’s like a match. Like, you don’t turn it off. You had a podcast where there was a lady that had her leg cut off.

    Luis 0:21

    And it was very interesting. Because, I’m to the point where I would rather them take my leg, then give me a fake one. That’s how much pain that is, you know, I’m up in age, I really don’t want to be struggling. But I’m only out of the hospital six months. So you know I’ve got to give it some time to work at it and see where it’s at.

    Intro 0:54

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:08

    Hello, and welcome to Recovery After Stroke a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future. I’m your host three times stroke survivor, Bill Gasiamis.

    Bill 1:23

    After my life was turned upside down and I went from being an active father to being stuck in hospital, I knew if I wanted to get back to the life I loved before My recovery was up to me.

    Bill 1:35

    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:52

    If you enjoy this episode and want more resources, accessible training and hands on support, check out my recovery after stroke membership community, created especially for stroke survivors and caregivers, this is your clear pathway to transform your symptoms, reduce your anxiety, and navigate your journey to recovery with confidence.

    Introduction – Nerve Pain After Stroke

    Bill 2:13

    Head to recoveryafterstroke.com To find out more after this podcast episode. But for now, let’s dive right into today’s episode. This is Episode 157 and my guest today is former gang member Luis Diaz.

    Bill 2:30

    Stabbed at 13 and living the gang life until his early 20s. Luis is very comfortable saying that stroke is not the worst thing that has happened to him, gang life was. Luis Diaz, welcome to the podcast.

    Luis 2:46

    Thank you. Thank Bill.

    Bill 2:48

    Thank you for being here. Tell me a little bit about what happened to you Luis?

    Luis 2:55

    Well, I had a stroke. I don’t remember when, May of last year. And I woke up in the hospital well, actually, I woke up in daycare but I was a couple of months, I was on life support. So all that happened, I woke up in daycare. Time has just gone by my kids get bigger. Daycare was it wasn’t nice. I didn’t have good experience.

    Bill 3:45

    Is it daycare in hospital?

    Luis 3:49

    Was it was in a hospital. I’m glad I had another stroke coming to the hospital. Because the hospital really took care of me.

    Bill 4:00

    Okay, so how old were you at the time?

    Luis 4:03

    46.

    Bill 4:08

    So you were 46 at the time?

    Luis 4:11

    Correct.

    Bill 4:12

    And you had a stroke. But did they not realize that it was a stroke at the beginning? What happened like how?

    Luis 4:21

    No, from my experience, I know they took a lot of blood samples. So they were trying to figure out why I had the stroke or what gave it to me. So a lot of doctors have told me that I was hyper syphilis.

    Luis 4:44

    Some doctors think it’s something I ate, others think It was an infection in my brain. So they took a lot of blood samples from me to the point where they couldn’t find a vein anymore stick blood. They were taking it from my head.

    Bill 5:07

    So they couldn’t work out what caused the stroke. So they have no idea still to this day that you’ve had a stroke for this reason or that reason?

    Luis 5:19

    No, I mean, I have some doctors that right away would tell me it’s hyper syphilis. But to this day, I haven’t been told, this is what caused it.

    Bill 5:31

    Okay. On the day of the stroke, what were you doing? Were you just going about your business per normal? And then you started to notice some problems? What was that like?

    Luis 5:45

    I was on my ex’s house. But honestly, I don’t remember having it. I don’t remember getting picked up. I don’t remember going to the hospital. I don’t remember nothing till like two months later. I woke up at daycare.

    Bill 6:02

    Two months later?

    Luis 6:03

    Yeah.

    Waking Up In a Pandemic

    Bill 6:05

    Wow, man. And when you woke up there, two months later, who’s in the room with you? Is your family there? What happens?

    Luis 6:14

    No, actually. The pandemic has just started. So I woke up in this pandemic, they wouldn’t allow family members to visit me. Everything has to be done through FaceTime.

    Bill 6:30

    Did you wake up and wonder where am I? What am I doing here? Did anyone give you any information that made you feel better about where you were?

    Luis 6:39

    No, It was just waking up. And I was like where am I? In daycare I could talk, when I got to the hospital I couldn’t talk. Yeah, I couldn’t walk, I couldn’t talk. And they were feeding me through my stomach.

    Bill 7:02

    First time you know about anything is you wake up at two months later, there’s tubes in your stomach? You don’t know how you got there. Man what was going on in your head at the time? Are you, I don’t know. I’m just trying to understand like, what is that like? It sounds like it would be pretty scary or be crazy.

    Luis 7:25

    Yeah, it was pretty crazy. Yeah. I mean, the the hospital was really, really wonderful. I couldn’t say much more about them. But they took real good care of me. Daycare was just like he’s here, they’re paying us and we’ll just take care of him. But Daycare was horrible. At least the one I was at. It was just I’m glad I had another stroke, I’m glad I ended up at the hospital.

    Bill 8:01

    So you had another stroke. How soon after the first one?

    Luis 8:06

    I think it was almost 14 days, It was two months later, but when I got out of life-support. I was at daycare for almost 14 days when I started getting another one. And then that’s when I woke up in the hospital.

    Bill 8:26

    And you still didn’t know. No idea why the second one happened. Also we didn’t know why the first one happened still?

    Luis 8:36

    No, the nurses kind of told me a little bit but it had to be done through FaceTime everything. Everything was through computer everything. So I couldn’t see my family can talk to them. Everything was facetime if I wanted to talk to and I’m lucky that my brother’s wife is she just billing so she was very familiar with it. She helped me out a lot. They helped me out tremendously. And I thank them for that.

    Bill 9:19

    So when you woke up did you have some things that you couldn’t do anymore? Did you have deficits was there issues with your body physically? What were you dealing with?

    Luis 9:32

    I lost a lot of weight. They were feeding me through my stomach. So I was getting real skinny. They were basically give me shakes in my stomach. And then I couldn’t move. I couldn’t walk, I couldn’t talk I had a tube right here.

    Bill 9:57

    I think they call it a tracheotomy or something.

    Luis 10:01

    I had to get trached. And they put that on there. But, you know, time goes on. I mean, I’ve been on about six months. So, you know, I’m walking now I’m talking. And I thank God for that.

    Nerve Pain After Stroke

    Bill 10:21

    Is there anything that still bothers you every day because of the stroke things that it caused, like, do you have numbness anywhere or any issues?

    Luis 10:31

    Yeah, my left side is my bad side. Yeah, that side is my leg is constantly on fire. It’s like a match. Like, you don’t turn it off. You have a podcast where there was a lady that had their leg cut off and it was very interesting. Because I’m to the point where I would rather them take my leg, then give me a fake one. That’s how much pain it is.

    Bill 11:09

    Louis, that’s dramatic. Man, that is really dramatic. Because I never expected to find one person on the planet, that would say, I decided to cut my leg off because it was too painful. And now here’s a second person that seriously considering it. Are you seriously considering it? Or is it just something that is interesting to you? Because you heard it on the previous episode?

    Luis 11:32

    It’s interesting to me, because I heard it on your podcast. And you know, I’m up in age, I really don’t want to be struggling. But I’m only out of the hospital. Six months, so you know I’ve got to give us some time to work at it and and see where it’s at does. But I’m definitely considering it.

    Bill 11:54

    Does the pain stop you from you living a full life? Does it get in the way of your daily activities?

    Luis 12:02

    It does, but I’m used to the pain though, I have a high pain tolerance. It doesn’t mean I like it. But you know, mine is higher than somebody else’s.

    Bill 12:17

    Does it mean that you’re struggling to walk with it? Is it bad when people touch it? How does the leg feel?

    Luis 12:26

    Yeah, my daughter slaps it once in a while. I call it my dead foot. But sometimes it just doesn’t feel good. You know how when you sit on your leg or your arm and it falls asleep? It’s how it feels 24-7.

    Bill 12:47

    Yeah, that’s my leg and my left side, that’s all my left side feels like that. And the burning sensation is not that bad. All the time, sometimes it’s really bad. And, you know, if you drive the car, and I’m next to my wife, and she’s on my left side, and you know how sometimes in the car, you know, you touch your wife’s knee or you touch her hand or whatever.

    Bill 13:13

    But if she does that, to me, and she touches my left side, I have to tell her to stop touching me. So I say it because she’s trying to be gentle and nice. But if that’s extremely painful to me, so I have to remind her, that she’s actually causing me pain and she doesn’t like it because she’s trying to be gentle.

    Bill 13:32

    But that’s just how it is. All the time. 24 seven, and at night, I sleep on my left side. Because if I slip on my right side, the left side touches the sheets and the sheets because they’re light and they shift a little bit.

    Bill 13:48

    They actually interfere with my sleep, they cause pain and they wake me. So if I sleep on my left side on my numb side, what happens is I kind of squash it with my bodyweight. And then it doesn’t send pain signals. For some reason. I can’t understand it. But that’s how it works.

    Luis 14:09

    I sleep on the left side. I just being on the left side. It’s mostly numb. So to me, it’s just dead weight.

    Bill 14:24

    And when you get out of bed at night, if you go to the toilet, or in the morning, do you have to pay attention and be really careful when you get out of bed to make sure that you don’t fall over?

    Luis 14:35

    Oh, I fell on my brother’s once. And ever since that day I promised to myself on so I knew he had to pick me up, heard me. And sure enough, he picked me up. I’m a tall guy. So him picking up dead weight was tremendous.

    Bill 14:56

    How tall are you?

    Luis 14:57

    I’m six foot and I weigh like 240 so for him to pick me up dead weight, it was not easy for him. I promised myself since that day, I will never fall again. And I never have.

    Bill 15:13

    I hope so man, I hope you never fall again. The lady that we were talking about earlier was on episode 136. Sarah Curley, and yeah, she had spasticity in her leg, which was so bad it was causing her so much pain.

    Bill 15:30

    I think she did the amputation, I think it was below the knee. I’m not sure I can’t remember exactly. And she said it changed her life for the positive like for the better completely changed our life.

    Luis 15:42

    I follow her and, she hikes and she does a lot of the things I like to do. And I definitely don’t want the leg to get in my way. I would rather them take it and me continue in my life than struggle with it. That’s just my opinion.

    Bill 16:04

    Yeah that’s a fair enough opinion. Is it getting in your way? Is it stopping you from going on those hikes? And doing those types of things with your family and your friends?

    Luis 16:14

    No, I mean, by now I manage myself where I can go, or how far can I walk? What’s going to get me tired? So I go to the gym it takes me about 20 minutes to get there. I do about an hour at the gym, another 20 minutes back.

    Luis 16:35

    And I feel fine. So that tells me I could go a little longer. So you know, that’s where I’m at right now. And we’ll see in about a year. I’m taking medication for the leg. If it helps, I’ll continue. If not, then I’m really considering just take the sucker.

    Intro 17:01

    If you’ve had a stroke, and are 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?

    Intro 17:18

    Doctors will explain things. But obviously, because 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 find yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 17:40

    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 18:01

    Yeah, you’re considering everything. Okay that’s fair enough, man. To be honest, it’s a bit shocking to hear that but I am not in that situation. So I don’t understand but I have a friend who lost both his legs due to a disease called meningococcal when he was 19.

    Bill 18:34

    But before, so he lost one of them above the knee. And then I think it was about five or six years later, he decided to go back and have the other one removed as well because it was so damaged after the disease kicked in when he was 19 that it was stopping him from being able to live a full life and to be really free.

    Bill 18:55

    And he had the awareness in his head. He kind of said when they took my my first leg off. That one is not stopping me from doing anything because he had a you had a middle leg and all that kind of stuff that made it perfectly fit fit him and all that type of thing.

    Bill 19:12

    And then he realized that it wasn’t the amputated leg that was causing him problems. It was the one that wasn’t amputated that was making his life extremely difficult. And he went back and he got it cut off at the same location. And now he is balanced. Now he can run on his prosthetic legs, he can play golf, which he loves to do.

    Bill 19:34

    He can do everything that he couldn’t do before when he had one prosthetic leg and his well, his sick leg because his leg was really sick at the time. Right so I I’ve had this conversation with a few people before.

    Bill 19:51

    And it’s I’m starting to understand what’s behind it rather than just get shocked by the conversation and go Yeah, well man that sounds dramatic. You know, it’s serious stuff behind that it’s not just, I’m gonna cut my leg off and that’s crazy.

    Foot Infection And Nerve Pain After Stroke

    Luis 20:05

    Yeah. I like to be outdoors. I like to be out there and just experience life, and I don’t want my leg bothering me. And the other thing is during the pandemic, they wouldn’t cut your nails.

    Luis 20:28

    So my feet got real bad. They just wouldn’t cut them. So I was forced to have, like if I would get an ingrowned toenail, I had let it pop out to the side. It was very painful, and that was because they just weren’t allowed to trim you.

    Luis 20:49

    And yeah, so when I would go on walks, like my feet will bleed and I would have to wait a day or two for them to heal and my left side is my bad side. So that foot got really infected.

    Luis 21:10

    So I was just like, I mean, I get them trimmed professionally, you know, my daughter takes me, but in the hospital they wouldn’t do that. That was about four to five months of just you’re nails growing. So if you had an ingrown you just let it pop out to get some kind of relief.

    Bill 21:35

    That’s so bad, because I’ve had ingrained before exactly what you’re saying. And trying to let it do anything is really hard and you can’t sleep at night. You can’t put the covers over you because it stings.

    Bill 21:48

    And if it’s on the left side, my left side that makes it worse. 10 times worse. And I’ve got to get a trim those nails. You can’t You can’t do that. I’ve never heard somebody tell me that because of the pandemic. They couldn’t get the nails cut, man.

    Luis 22:01

    Yeah. They wouldn’t even allow nail clippers in there at all. No nail clippers. I would ask to have my nails I remember the first time I asked if I can have them trimmed. Nope, we don’t allow them in here.

    Bill 22:18

    That’s so weird.That is the strangest thing I’ve ever heard. But I’m continuously being surprised by new things I hear about this pandemic.

    Luis 22:27

    Yeah. And you know, I woke up in it. So I guess to them, it was new, to me, to my daughter’s right now. It’s all new to them, You know I have a shunt in my head, I have a big bump in my head.

    Bill 22:41

    Oh, that’s a nice one.

    Luis 22:43

    Yeah. There’s a machine in my head it drains into my stomach, keeps me alive.

    Bill 22:53

    So that was one of the results of whatever happened to you, whatever caused the stroke, you therefore needed a shunt to keep the the cerebral fluid, not creating pressure in your head and expand and causing more problems.

    Luis 23:10

    Yeah, so the extra fluid just drains to my bladder.

    Bill 23:19

    Does that mean you have to go to the toilet more often?

    Luis 23:22

    Exactly the kids always telling me drink more water but I don’t want to go to the bathroom. It takes some issue to go to the bathroom. You know, I just haven’t got it all down yet. You know? Like when I take a shower to rely on the wall, when I change, you know, you know, putting my shorts on. So I have to rely on all that.

    Bill 23:57

    You may have got a lot of things in common because when I take a shower, it’s really dangerous. It can be really dangerous. Yeah. Because you know, in the shower before you know you lift one foot and you wash between your toes and you’re standing on the other foot, right?

    Bill 24:10

    Well, I can’t do that anymore, either. And I have to lean on the tiles on the cold tiles. And make sure that when I lift my foot to wash underneath it with the soap that I’m not going to fall over like it really it’s very scary actually. I never feel comfortable in the shower.

    Luis 24:27

    You know what I don’t either. And my left foot I hate cleaning it, that’s the most painful part is my foot. So having to wash it and clean it. It’s annoying. It’s just it’s painful. So I definitely don’t enjoy that at all.

    Bill 24:53

    I agree with you

    Luis 24:55

    And it’s not like more frequent, before I used to take a shower, like three times a day, if I would sweat, I would be in the shower. But now you know, I go to the gym and you know before I go to bed, I go to shower. So that’s two showers a day. It’s just, I try to avoid the foot as much as possible.

    Bill 25:20

    Yeah, I understand. Do you ever walk barefoot?

    Luis 25:25

    Yes.

    Bill 25:26

    Is that good for you? Or is it weird because I can’t walk barefoot. It’s really strange.

    Luis 25:32

    No, I mean, I’ve kind of learned to deal with it. You know, but being barefoot doesn’t bother me. You know, if it goes away the pain later on mostly. But right now it’s fairly new. But I don’t want to be in pain. You know, for the rest of my life. I don’t want to be like that.

    Bill 25:55

    And are they giving you pain medication for that?

    Luis 25:59

    They’re giving me they say I have nerve damage. So they’re giving me something for it. But if that doesn’t help, you know, I have to make a decision down the roadr?

    Bill 26:12

    Man, that’s a pretty full on decision. Tell me how old were the kids when you had the stroke?

    Short-term Memory Issues From Cryptogenic stroke


    Luis 26:19
    I think my oldest is 22, 20. She’s 19 when it happened. My little one was 14, and I just had Newborn and he was three months old. So it was all new to me. I mean, I remember the kids. I can’t remember short.

    Luis 26:50

    I mean, I remember you, but I could forget.

    Bill 26:55

    Short-term memory issues?

    Luis 26:57

    Yeah, exactly. I need to take notes now. My daughter has put my email, phone number, and code in my notes. So I’ll forget that. I’ll be like oh, damn, I forgot that. I’ll come back later.

    Bill 27:16

    Do you remember your home address?

    Luis 27:18

    Yeah, I remember that.

    Bill 27:19

    Yeah, okay.

    Luis 27:21

    Yeah. But the kids that was one of the first things they asked me was about my kids. And how old were they. And so I go on old rolls. It’s always the oldest to the youngest. And then, you know, it goes from one, two, the three. And then the nurses looking at me and I’m like, shit that’s right I have the son.

    Luis 27:49

    And it really wasn’t that I forgot. It’s just he was so young when it happened. You know, when it when it when I woke up in the hospital? I mean, we’re learning to walk together. Me and him are no, ha ha. He just slept. Yeah. So me and him are like, like, he knows who I am. And I’m grateful for that. But for a while, I didn’t want anything. I couldn’t walk. I couldn’t talk. I didn’t want the mother to see me that way. I didn’t want my son to have a father way. So that was very difficult. But for me, it was just like, I don’t want I don’t want my son assuming like this. My kids are working. When my son was three, four months old. I just didn’t want to have him around me. Yeah, me being like that. But the mother’s real good about telling them who I am and always reminding them that that’s your dad and that she drops him off every week. So tomorrow will be our first tip over tomorrow. So okay,

    Bill 29:03

    that is awesome. Man. That’s so good to hear. So, who’s walking better? Is he better at walking at the venue? Or are you better than him? Well, I had back surgery. So yeah, I have to keep up with a good Yes, all this energy hasn’t had that so good. It’s a good motivation, isn’t it? It’s something to really motivate you to get better.

    Luis 29:26

    It’s really good motivation. Yeah. Like I know, I’ve got the Zilla take off. Yeah. Yeah. But it’s all over the house is here. They’re up and over. Yep. He keeps me on my toes.

    Bill 29:44

    The other kids live with you.

    Luis 29:47

    My daughter’s daughter take care of me. My middle daughter lives up the street. So she’s always

    Bill 29:54

    over here. So if you need a babysitter, everyone’s close. You can get them to yeah

    Luis 30:01

    Yeah. Well maybe not my son, my son don’t really like my daughter’s only like one of them. But he has his reasons.

    Bill 30:16

    Yeah for sure they probably don’t let him do whatever he wants. And he gets upset with him. They give him a hard time.

    Luis 30:24

    Something like that. You know, he doesn’t like to be told no. We tell him no, it’s drops his bottle or whatever he has in his hand he drops and starts crying. He just doesn’t wanna hear it.

    Bill 30:41

    You know what’s interesting Luis? Is you sound like stroke sounds like it’s been pretty bad to you, right? In the beginning especially it always is most people don’t really have a good thing to say about stroke. And I completely except that there’s always the same, right.

    The Gang Life


    Bill 30:56
    But on my Instagram. A couple of weeks ago, I asked a question, which was “Is stroke, the worst thing that ever happened to you?” And you said, No, it’s not the worst thing that ever happened to me. You said the worst thing that ever happened to you was being involved in gang life.

    Luis 31:15

    Yeah, that was much worse.

    Bill 31:17

    Man, stroke is pretty bad. That’s one of the worst things that I’ve ever experienced in my life. But you reckon it’s not as bad as gang life? Can you give me a bit of an insight into how old you were when you got involved with gang life?

    Luis 31:33

    Well, I was always around. It was just, that was the way I was brought up. My dad was murdered when I was young. My neighbors, that was like the drug house, the gang house. So I grew up watching him. So it was normal for me. But if I was gonna walk to your house, I’m gonna get shot going to your house. And that was the way life was then. It was just that was much harder than this.

    Bill 32:04

    So you’re constantly looking over your shoulder making sure that you’re not being tailed?

    Luis 32:10

    Oh, yeah, most definitely. I’ll take the stroke any day compared to that.

    Bill 32:20

    What’s the point of gang life? Is there a point to it? What’s the reason that people get involved and do it? I know, it’s more complicated than me asking a silly question like this, right? But what do you feel like is what is the point of it? Why does it even exist?

    Luis 32:37

    A lot of the kids are, either they don’t have parents or just grew up that way. For me it was just they were there. They treat you more like family. But my brother never wanted it for me. My brother has always looked the way my brother was always cautious.

    Luis 33:05

    But, you know, you get into it, then it just, it consumes you. Because when you get old, because when you’re young, you don’t think of it but when you get older, you become a father. You really don’t want those problems.

    Luis 33:23

    You know, the problems that come with gang, if you’re where I’m in now, there’s gangs everywhere. You got different Mexican gangs, black gangs, whatever. I mean, they don’t bother me, but it’s definitely when I walk into the store. You know, be prepared. So, I’m always prepared. I always have a knife on me or I’m not going without a fight.

    Bill 33:56

    So even now, you’re not in gang life anymore. But even now, it’s still an issue for you and you’re still prepared.

    Luis 34:05

    Where ever I go It’s gonna be an issue. Yeah.

    Bill 34:08

    Is that because of who you are? Or is that because of the area you live in? Or is it a combination of both?

    Luis 34:13

    It’s a combination of both.

    Bill 34:15

    Okay. Okay,

    Luis 34:19

    I tell my girls, my girls know, I don’t lie to my kids. But yeah, it’s been a rough one.

    Bill 34:30

    So with the gangs, they get together because they are lacking family members of parents, whatever it is, they find each other. They create a community. They belong somewhere. They don’t necessarily have anyone guiding them in a different direction is that it? Is it also very difficult to be guided out. Your brother didn’t get in. But at that young age, could anyone convince you to get out of that?

    Luis 35:01

    No, it was just, it was there. It was easy for me. You know, when you’re that young It was. It was kind of what I wanted. It’s okay yeah. You know, I was stabbed at a very young age I wa like, 13 or 12 when I got stabbed, but then I looked at it more like, this is a badge of honor. You know, the homies are gonna talk about it. But I look at it now and it’s totally different. But yeah, that was much harder than this. You know, I’ll take the stroke any day compared to that.

    Bill 35:51

    When you’re not in gang life, you got no idea. We’ve got no idea what that could be like. And it’s, it would be very difficult. It’d be very stressful all the time. You’re always more than likely looking to prove yourself and make sure that people didn’t think there was weakness.

    Bill 36:10

    Make sure that people didn’t think that they could, you know, get one over you in any way, shape or form. You probably could never back down. You could never be vulnerable. You could never show emotion. Is that accurate? Are you never able to really be anything other than this gang member? And also between your own gang members can you be emotional? Vulnerable? Any of those things?

    Luis 36:36

    Maybe to your close friends, they know you the longest but showing your weakness? No. It’s it’s not acceptable. That’s something you can’t do. Yeah, you’ll be looked at different. You have to have this Darth Vader shield on all the time. And it just had to go with you. Because you will be looked at different. You don’t want to be that guy.

    Bill 37:18

    When I hear about gang life in America, the only things I’ve ever heard of are what they show on TV on movies, that kind of thing. Is it involved? Do you guys get involved in colors? Is that how you identify each other is a different particular type of color or patch or something that you wear to identify who is from which gang?

    Luis 37:41

    Well, definitely in the neighborhood I was in. Everybody had their colors. So my neighborhood would be like considered the four corners. So it would be brown, black, blue, and red. So they definitely knew. Okay, that guy’s wearing that color so it would go that way. For sure. Like my friend is a browns fan and I tell him you’re not a Browns fan. You only like the Browns because it’s your gang color.

    Bill 38:17

    The Cleveland Browns?

    Luis 38:18

    Yeah, the Cleveland Browns. You don’t like them? You like them because of the gang. Yeah, I’ll make fun of him. But, you know, I’m already defensive. And that’s my worst enemy’s colors. So for me, it’s okay.

    Bill 38:43

    Is there any older guys like you 46 years old still involved in gangs? Or is that a young man’s game?

    Luis 38:51

    It’s mostly a young man’s game, but there’s a lot of older homes that the owners Aiko still wanting? And, you know, they want to live their life. That’s their life. I don’t want to live that life. You know, but, you know, more power to them if that’s what they want to do.

    Bill 39:15

    Yeah, fair enough. And is it easy to step away from it? Can you just say one day, I’m done with this. I’m out of here. Is that possible?

    Luis 39:22

    Yeah, it definitely is. If you want to start a family or something. They’re not gonna bug you. At least where I’m from I know, some places, you can’t. You know, they want you to choose this or everything. And, you know, my family to me was very important and I caused so much damage to my youth that, by my 20s I want to settle down and have kids which I did. Thank God for that.

    Settling Down


    Bill 40:01
    Yeah, man, thank God true. So by 20 you you were that wild. You’re such a wild kid that by 20 you felt like you had done everything you needed to do and you needed to settle down that is interesting in itself.

    Luis 40:15

    I needed to settle down. I was just like, start your family and becaus at that age I was bored. I was like, I’m just doing the same stuff every day. I don’t want to do that. Work do a family, that was more for me.

    Bill 40:37

    How old were you when you lost your dad?

    Luis 40:40

    I was one.

    Bill 40:44

    So you didn’t know him at all really?

    Luis 40:49

    No idea.

    Bill 40:50

    Yeah. So not a lot of guidance. It was you your brother. Who else?

    Luis 40:55

    My sister I have a stepbrother now I don’t like saying stepbrother, but I have a little brother. And my family. My brother has a family. And I have a big family. I come from a big big family.

    Bill 41:12

    So there was a lot of support. Was there a lot of support still in the family when you were growing up? Or wasn’t that support there? Did they distance themselves from you? What happens there?

    Luis 41:27

    No, we lived in a separate area. So I mean, that was the style I chose. You know, I remember I got sick one time and my mom wanted to put rubbing alcohol on me. And I wouldn’t let her do it. Because I had a big tattoo on my stomach.

    Luis 41:48

    And like let me rub it on you and I’m like no no no I’m all good. But I had the big tattoo in my stomach. And I didn’t want them to see it. And yeah, they eventually, see me now. And you have tattoos everywhere? I’m like, yeah, you know.

    Bill 42:10

    What is it with that man? And you’re in a gang, you’re real tough, you’re fighting people all the time. Who knows what else you’re getting up to? And you’re afraid to let your mom see your tattoo? What’s all that about?

    Luis 42:23

    Mom don’t mess around. That’s one woman right there that will mess you up for sure.

    Bill 42:33

    That’s the funniest thing you just ever said to me. I’m thinking we’re gonna be talking about you know, all the tough stuff you did. And then you tell me you couldn’t show your mom your tattoo? Because she’s one mean lady.

    Luis 42:46

    My grandma, saw my tattoo once on my arm and she told my mom right away. Mom got the kitchen knife and was trying to cut it off. She doesn’t play around. I have so many now that she just gives up. But back then they meant something, back then you get a tattoo they kind of represent your status.

    Luis 43:21

    But now everyone would just get some to get them. Back then it was more of he got this because he did something or he was in jail or I mean, I never been but those what that meant back then.

    Luis 43:36

    So today a lot of kids just get them on the face on their hands. And for me and it kind of defeats the purpose. Cause your tattoos to someone at my age would understand what that mean. Yeah the youth today. They don’t understand.

    Bill 43:59

    My sons have got tattoos everywhere. My sons are 25 and 21. At the moment, They’ve got heaps of tattoos. And they didn’t care, there was nothing, you know, we’re fortunate we don’t live in an area where there was gangs and we didn’t have those types of issues.

    Bill 44:16

    But as soon as they were allowed to legally when they turned 18 and go to a tattoo parlor and get to tattoo, they were covered in tattoos. It was just what you do, right? And my mum, was like their grandmother was like that. And they didn’t want their grandmother to see their tattoos.

    Bill 44:34

    Because she was gonna give them a hard time. And even now, now that they’re 21 and 25. If they walk past her without their top on, she does the head shake, you know, she whats this stuff and why have you got this stuff on your body? Your body was beautiful and she just goes on and on and does not let them get away with it.

    Luis 44:58

    I bet but you know, back then you didn’t think like that. Back then that my friends had to hold batteries together. Hey’d get tattooed with a guitar string. Or one needle sharpened down. One needle will do everything.

    Luis 45:24

    And it was very painful. Compared to now you’re getting tattooed with a machine that has 16 needles. So it goes by much quicker. But back then it was your friend holding a battery set getting a tattoo. Yeah, it was not fun.

    Bill 45:48

    And if you’re getting it for a reason if you’re getting it because it says a story about your gang life. Can you back out of it? If it’s too painful? Can you show that it’s too painful? Or you just have to cup it.

    Luis 46:02

    Oh, well. Yeah, I actually did. My stomach was just way too painful. It was to the point where I told him to just do half of it. So like when I was 14 I already have this tattoo in my stomach. But I told them no it was just too painful.

    Luis 46:25

    Were you lucky that you did end up in jail?

    Luis 46:28

    Yeah. It probably would have been good for me, but I’m glad I didn’t. I went to jail once for like, two days. And I regretted it, it wasn’t for me. I’m like, Nah, I don’t want to live like that.

    Luis 46:50

    Some guys like that lifestyle, or they’re in the cell you know, in general. It’s like being outdoors. You know, you get high in there. You can you know, you sit in your cell then you get loaded. Some guys like that lifestyle.

    Luis 47:07

    I didn’t want the lifestyle. So for me, it was either work, family. That was it for me.

    Bill 47:19

    Isn’t an interesting what you just said? You know, the supposedly the justice system puts people in jail to punish them. But what you’re telling me is some people don’t see it as a punishment?

    Luis 47:33

    No, some people actually prefer to be in jail, because you get fed. Some people prefer to be in there. Because they’re troublemakers. They constantly get in trouble. They’re in there with other people they’re in trouble. It’s basically a college to learn more criminal activity.

    Luis 47:56

    Thats what it is, you don’t go there to rehab. It’s a big waste of money. You go there to be a better criminal. And that’s what they teach you. It’s no life, if you like being indoors all day long, eating out of stove, a makeup stove? Yeah. that’s your life, but if you don’t wanna go back there, don’t go back there.

    Bill 48:31

    So when you were in your 20s, you wanted to settle down? It sounds like you had kids pretty young like me as well. I was 22 when my first son was born. I’m 47 as well. Now. I was born in 1974. Sounds like you’re born in 1974.

    Luis 48:44

    Yeah, same here.

    Bill 48:49

    So were you still involved in the gang life when the kids were very little? Or had you moved out of it?

    Luis 48:57

    No I mean, you kind of always going to be involved with it. It kind of sticks with you. As you get older for me anyways, it’s, you see what’s real, what’s not. So that’s kind of what you got to take from it. There’s good friends and there’s bad friends. You know, there’s friends today, they won’t say nothing. When I was growing up, a friend would do your time. And we’re not seeing that. today it’s the opposite. There’s the guy facing football numbers and they’re quick to tell. So I seen it all. I’ve been around it all.

    Bill 49:42

    You reckon that is what has made you be able to manage with something as serious as a stroke and did it make you that tough, that stroke is difficult, but in your mind, it’s like whatever. I’ll get over it like did it prepare you for stroke? What did it do? Like it sounds strange.

    Luis 50:06

    In a way did you know I’ve been through a lot worse. You know, I don’t like the stroke. But it definitely it’s a reminder that I’ve been through a lot worse than this. And it’s new to me, but I can definitely get to a point in my life where I can enjoy life and my kids, and go hiking maybe later on next year.

    Luis 50:35

    But, yeah, it prepares you definitely. Because I’ve been in that, you know, position when I was young. And it kind of prepares you for it, because right now it’s more like whatever but I’ve been through a lot worse.

    Bill 50:59

    This is gonna be an interesting question. Would you change your upbringing? Would you change your life in the gangs? If you could go back would you erase it? Would you make it that you never did it and took a different path? Like your brother or not?

    Luis 51:16

    No, I wouldn’t do it. I’m happy with my life. You know, I got to experience something at a young age, you know, there’s something when I had the stroke, I was in a coma, then I got to live a real rich life when I was on life support whenever I want. So I have that experience of living both lives, rich, poor whatever. So no, I wouldn’t change it.

    Bill 51:55

    So what you’re saying, and correct me if I’m wrong, is are you saying that the spectrum of life that you’ve lived is very extreme one to the other, you’ve seen rich poor, you’ve seen coma, you’ve seen being awake and alert, you’ve been stabbed, you’ve seen all these things, and it’s a big spectrum and you feel like you’ve lived a very big part of life or a lot of life is that?

    Luis 52:21

    Yeah, I definitely kind of see a lot as a young kid. Stuff that you wouldn’t want to see you know, you don’t want to go to school and you being shot at, or you’re being chased, you don’t want that. But there’s things that you have to do you know, to survive.

    Acquired Mindset


    Luis 52:45
    Always pay attention always be alert. And I had shortcuts, I had shortcuts everywhere, everywhere I went I had a shortcut if I had to hop to your house I’ll hop to your house, but I always had that. shortcuts shortcuts saved my life is I was aware. I’m not gonna walk down the street and get shot at.

    Bill 53:12

    It gave you tools that you could use? Did it give you tools that you could use for this next big challenge? Did it give you stuff that you can take from that old life and maybe a mindset or determination? Or did it give you stuff that you’re using now?

    Luis 53:36

    It’s definitely your mindset. You know, that if I can overcome my youth, I can somewhat overcome this as best as possible. It’s still new to me, I haven’t been out that long. But I’ve been in worse positions.

    Bill 54:00

    That it’s really fascinating. I asked that question. And I thought everyone was going to say stroke was the worst thing that happened to them, but very few people, well, it was about 5050. And most people thought that it wasn’t the worst thing that happened to them.

    Bill 54:14

    Some people weren’t grateful that it happened to them. All sorts of strange things came back and I was just stunned about it. I was stunned. Personally, I didn’t expect that. But it makes sense. We’re all different. We all have different life experience. We all have different challenges that we have to face.

    Bill 54:31

    And all the stroke is everyone has a different stroke. No one has the same stroke all the time, because we’re all different. It happens in a different part of our brain. It affects different parts of our body. So I was really stunned. But your comment, really, your comment of the gang life was worse.

    Bill 54:50

    That makes sense to me. Now that we’ve spoken, but I’ve never experienced gang life and it was a very interesting concept to hear you say that and it felt like even from You’re, even from your comment, it felt like you were the kind of guy because you had a stroke because you had this gang life.

    Bill 55:08

    But stroke was just another challenge, and you were going to find a way through it. Even though it’s early days, I actually believe that you will, and most people do. And I feel like you’ve got a really good baseline, a really good skill set of things because of your life that are going to be really helpful and useful to make your recovery as best as possible.

    Bill 55:31

    Yep, you’re going to have to deal with the shunt in your head. For the rest of your life, you’re going to have to deal with the numbness and all that kind of stuff. But me being in my position now for nearly 10 years, I don’t think about all the things that bother me on a daily basis.

    Bill 55:46

    I don’t think about them all day, every day, I only think about them when it’s being annoying. It feels to me like I didn’t think about the stroke all the time and what it’s done to me, I only think about it when it bothers me when it annoys me when I’m in the shower and account balance.

    Bill 56:02

    Or when I get out of bed in the morning to put my foot down. You know, with gang life, you said that you’re switched on, you’re thinking about it all the time. You’re watching your back all the time, or you’re doing the same thing with stroke, or are there moments where you forget about it and you’re not paying attention? And you’re just being present in the moment like when your child is over or when you’re doing something you enjoy.

    Luis 56:23

    Now you have to be on your toes, especially when my child was here, I know I had to be 100%. The mom asked me, I told her if I could have him, one day I told her if can have him an extra day and she was all can you handle it? And I was very grateful for that. Because she’s watching over me.

    Luis 56:48

    She’s saying well I don’t mind you having him but him but. How are you gonna feel? So that made me feel good? Because it is hard. It is hard to you know, I’m dealing with this. And it’s new to me. But experiences, but when the kids are here, I definitely have to be on my toes.

    Luis 57:13

    My two oldests are here, they’ve got boyfriends, but they just run all over me. You know, I’m not allowed to go outside. Well I could go outside, but they want me to have a stroke when I’m at the store or something? Because I take a lot of medication. They just they prefer it to happen here. But it’s new to them, it’s new to me. So I don’t say nothing.

    Bill 57:48

    Yeah, that’s interesting. It’s new to them. They’re dealing with it as well. They’re trying to work out what’s going on with their dad.

    Luis 57:56

    Cuz I went from being the Hulk to being Mickey Mouse. it’s like, yeah, I remember they used to call me the Hulk. But I feel more like Mickey Mouse now. And it is what it is, you know, I have to they’re here. They take care of me. And I used to tell them before, who’s going to take care of me when I’m old.

    Luis 58:26

    But, you know, they take care of me now. And it’s funny, I think about it, sometime. But I’m glad that they said you know, we’ll take him in and they work hard. And I’m thankful for that. They’re here and they’re watching me and they’re make sure I take medications, I have a mask.

    Luis 58:54

    They’re always watching me. When I go to the gym it’s like, be careful. Get out your phone. They always make sure that I’m 100%. My brother always checked up on me my niece’s tell my mom, of course, my mom is she’s constantly here bringing me my mail or food. But my mom is huge. You know, she’s a big, big anchor in this. Even though our feud when we were younger. I wouldn’t change it mom is an amazing woman, you know, she can raise a knife to me anytime.

    Bill 59:41

    You keep finding ways to give her a hard time. You know, when you were a kid you in gangs, then you had a stroke and she’s like.

    Luis 59:50

    Oh, yeah, I kept her on her toes for sure.

    Bill 59:55

    I see what you’re saying, man. I know what you’re saying is that the stroke recovery right now is Front of mind for you. And it’s front of mind for everybody, everyone wants to make sure you’re, well, everyone’s checking in with you, and then make sense. It’s very early days, I wish you a speedy recovery, I want to, I want to encourage you to keep doing what you’re doing.

    Bill 1:00:14

    And consider all options, whichever ones work for you, hopefully they can manage the pain and things will settle down and be better. And I really appreciate you responding to my question. And then being kind enough to come on the podcast and have this conversation with me about a topic that I’ve only ever seen in the movies that I’ve only ever, you know, seen on TV shows from America.

    Bill 1:00:38

    And I’ve got no idea what it’s like. So I’m constantly learning about stroke. And one of the things I’m trying to do is just create as much awareness as possible and use as many stories as possible from different backgrounds as possible. Because not everyone had the same background, upbringing, stroke, life as me like nobody had that.

    Bill 1:01:02

    And I find it fascinating when people connect with me, from a completely different part of the world, completely different cultural background and upbringing. And we have so much in common, you know, that just, that just drives me. So it makes me so happy to connect with people that we have a lot in common with.

    We All Want The Same Thing

    Bill 1:01:24

    Now what I’m realizing, after nearly 160 episodes, I think this is going to be 157 or something like that is doesn’t matter where you’re from, doesn’t matter what your upbringing is, whether you’re rich or poor, or whatever. Everyone wants the same thing. They just want to be safe, and they just want to be healthy. That’s all they want

    Luis 1:01:45

    Exactly. I wanna be able to walk with my son go hiking with him, everybody, you know, my nieces, my daughter’s, but you know I have to work with it. And it’s still early you know I got time to work at it and mess with it. And okay, this is working for me, this is not working for me. And kind of just go from there. But, you know, I’m thankful. It happened. I can’t cry about it. It happened and I just got to make the best of it. I can’t sit around and mope around.

    Bill 1:02:34

    How good is it to be around obviously, for your entire family. But for your baby.

    Luis 1:02:40

    It is really good, it is really good. He was here awhile ago causing trouble. And yeah. But when he’s here, I gotta be on my toes. 100% because he’s all over the place he’s a handful.

    Bill 1:02:56

    And it’s the simple things in life, isn’t it that life doesn’t need to be more complicated than that really, does it?

    Luis 1:03:02

    No, it doesn’t. It’s simple things in life that people take for granted. You know, like, when I was in a coma. I experienced that life experience being very wealthy. I experienced being very poor. I experienced it both that it just makes me more grateful. Because I experience a lot of life and I was in a coma. So yeah, it makes me feel I lived that life. Even though I wasn’t awake, fully. I kind of experienced it. And no one can ever take that from me.

    Bill 1:03:50

    Were you working before the stroke?

    Luis 1:03:53

    Yeah, I was. I was going to school actually. I was going to school to be a bus driver. And that’s when it happened. You know, I actually call my teacher. His number was just on my phone and I decided to call him and just to say thank you.

    Luis 1:04:15

    But he wasn’t there no more. But I told him, thank you. He’s someone who remembers me. You know, but he was telling me if I want to go back to go. I’m not allowed to drive right now. I have a brand new car and I can’t even drive it.

    Bill 1:04:38

    And therefore it’s not looking likely that you’re going to get back to work, at least in the near future. You’re not going to be working for a little while?

    Luis 1:04:48

    I would do so. I mean, right now. They’re talking about going back to work. Well, I’m just trying to survive. I don’t know about you wanting me in such a hurry to put back to work? I’m just trying to learn to walk talk, function. You know, it’s all new to me. And I don’t see it either. But here where I’m at in California, it’s different. There’s just like, a year you’ll be okay. You’ll be back to normal. I don’t see it. I don’t see a one bit.

    Bill 1:05:25

    They look at you wearing your hat. If they can’t say your shunting your head. Do you look normal.

    Luis 1:05:33

    Yeah I think so.

    Bill 1:05:36

    They look at you and they go, Luis looks good, man. You know, he’s okay. So they assume that because you look okay. You must be okay.

    Luis 1:05:47

    Yeah, but you know, getting brain surgery. You just, yeah, you have to stop when they come and stuff. You know, it should this guy just got to think about it a little bit. This guy needs help, you know, not, not rushing back to work, this top discard that too many people are in there, too.

    Luis 1:06:15

    Just started back in the woods. I’m just trying to get better and walk and talk better my speeches is not that great. You know, I had a machine that spoke for me. But you know, I had to learn, you know, have these things have to learn to get up and in, you know, and I and I’m grateful for that.

    Luis 1:06:40

    When my brothers took me home, and my sister in law, I was so thankful I was the cat out. I can’t wait, leave this hospital. But then when I got to his house, I realized what the hell I can walk. You know, I barely talk. And he was just like, yeah, I’m such in a hurry to leave when I can barely walk. And staff for me at those kind of quick.

    Bill 1:07:12

    So would have been a little better to have more time in rehabilitation, more time in recovery at hospital, so that you don’t come home with such difficulties.

    Cryptogenic Stroke In The Middle of a Pandemic

    Luis 1:07:23

    Well, I don’t know about the recovering this pandemic because they had everything shut down. So I was stuck in a room, most of the time. You know, I was really allowed other people. They only have one or two nurses at a time on Fridays the Doctor would come. But they get everything really shut down. I really just wanted to eat. I was getting fed to my stomach and all this food would come by and I was like just let me eat. I just want to eat.

    Bill 1:08:07

    And then when you eat when you did eat for the first time. It was a risk of choking yeah?

    Luis 1:08:13

    Exactly, they had to X ray need to make sure I could swallow or what my swallowing was like. So they did that and they decided well you know he could eat this type of food, but whatever man they gave it to me I eat it I couldn’t wait. breakfast lunch and dinner.

    Bill 1:08:44

    What was the food that you’re really dying to get your hands on?

    Luis 1:08:48

    Oh, man. I could have gone for good good burger. Yeah, burger pizza. Something. The hospital food was not great, but I haven’t needed in three, four months. So it was great to me. It said the mashed potatoes mashed potatoes were horrible. But everything else was I just take it down. There you go. Boom, boom.

    Bill 1:09:19

    Is the tube in your stomach still or have they taken the tube out at that point?

    Luis 1:09:23

    No, they actually took the tube out the day I was gonna leave. It was hanging but they weren’t using it. They weren’t feeding me but it was still in me. So it had a rubber piece on the end. And the doctor put it in was like it’s gonna be painful. And sure enough, it was oh it’s only gonna hurt for like 10 seconds but he pulled it out and oh my god. It was so painful. 10 seconds my ass that’s hurting forever. It was horrible.

    Bill 1:10:03

    So you know, when the tube is in your stomach and you’re not eating, are you allowed to drink through your mouth or no drinking either?

    Luis 1:10:09

    No, everything got fed through tubes. Everything.

    Bill 1:10:14

    Are you thirsty? What’s happening in your mouth?

    Luis 1:10:17

    They’re giving you ice chips. Yeah. So when they came in sort of for the first time, I was like, Yes. I’ll take it. There was this there was this orderly that always gave me my neighbor’s food was extra. Or he had extra food. And he would give to it. Can you eat this? And I’ll be like, yeah, it says here that you can’t, but he would give it to me anyways. sandwiches. I’d be like yes I was happy. Yeah, eating was yeah, getting fed to the stomach was no it was horrible.

    Bill 1:11:04

    Sounds like you really missed it. And, again, I’ve never been in that situation. So I can’t understand it. But it sounds like you’re passionate to eat again.

    Luis 1:11:14

    Oh, my God, I couldn’t do it. In the morning, there was this. It was like the cart that will come by every morning to feed the workers, or the workers get by whatever they want. One day, I was like, stop in my room. I have no money. But I was like, stop in my room.

    Luis 1:11:37

    And yeah, I just wanted to eat some food. And I would tell him all the time, what are you gonna eat? Not sure. But yeah, eating was a huge part let me eat.

    Bill 1:11:57

    Did you put on more weight after you came out of hospital? Are you back at your old way? Are you still a bit lighter than you were before the stroke?

    Luis 1:12:04

    I’m a bit lighter, but I had to put on the way back. And then get down. Because when I came out, I was like a dude. I was just skin. I didn’t want to be that way. So it was just more for me to put the weight back on to what happens. And then this next year on my birthday, see where my dessert will be about six months in the gym. So that will tell me where my legs at.

    Bill 1:12:45

    Was the gym hard at the beginning was difficult to get back into the routine of pushing your body?

    Luis 1:12:52

    Pushing my body was very difficult. Yeah, because you could barely walk. But I always enjoyed working out or playing. So that for me was okay. It was good. So when the recovery just came to my house. It took me for a walk and stuff I didn’t mind. It was like, Okay, we’ll do this. Let’s do it now.

    Luis 1:13:29

    But I learned that the best way to do it is by yourself. If you’re going to do it here is go out by yourself. go the gym by yourself. Because therapy here is a big joke. My insurance only covers a couple of weeks at that. And by then they’re only there to teach you to walk when I’m doing a walk up and down go down the street go up the street. So in my eyes, I could just do that by myself. I want to work out I’ll go to the machine I want to walk out just take a walk.

    Taking Responsibility For Your Own Recovery

    Bill 1:14:15

    I think you’re very lucky in what you’re able to do. I think you’re blessed a little bit in that way. A lot of people can’t do any of that stuff by themselves. But yeah, it’s important to take responsibility and do what you can do. And be as independent as you can. So if that works, that works that that’s what I did.

    Bill 1:14:33

    I got annoyed because to go to rehab to get better at walking. I had to do a one hour trip there. By the time we get there and stay there for an hour. I’ve got to come back and it takes an hour to get back. That’s three hours. Three days a week. And it was too much and I just said Look guys, that’s enough.

    Bill 1:14:56

    I’m not coming back again. I’m gonna do this by myself. I said exactly. Do the same thing. I’m going to take responsibility now. You’ve done a great job so far, but I can’t spend three hours every second day. Coming to rehab. I haven’t got a life. I can’t do anything.

    Bill 1:15:11

    So I did it at home, I started to go for a walk. And, and when I was afraid to walk on my own outside, or I didn’t want to walk in the sun because it was too hot. I would go to the shopping mall near our house, and walk in the shopping mall on my own while my wife was at work, and my kids were at school. I would just go to the shopping mall, air conditioning, you know, have something to eat, and walk around for one hour, I felt like it.

    Bill 1:15:38

    And then I just went home because the shopping mall is only five minutes away by car. And by that time I was allowed to drive again. Some days Well, I wasn’t really allowed to drive. They didn’t actually tell me I can drive but I do drive now. I do now. Yeah, I felt better. I felt better after about six or so months to start driving on a drove. But yeah, that’s what I used to do to get exercise instead of trying to waste my time. You know, my other hours of the day getting there and coming back from my head. It was a big issue.

    Luis 1:16:14

    Yeah, same for me. I mean, I had to wait for three caretakers on it worked me out on to work me out. One or two persons should be on the phone all day, or do puzzles. And now I do the puzzle on my phone. But yeah, for me, it’s easier if you do it. You know, do you want to get healthy you want to walk it’s best for you to go get it yourself.

    Luis 1:16:47

    Because they’re not going to give it to you here. There’s too many people here. Trying to get the help or getting the help. It’s just you’re not going to give you’re not going to get it. Go and get it yourself don’t depend on all to somebody’s gonna come. And, you know, my daughter’s my caretaker my daughter cooks for me cleans for me make sure I take my medicine.

    Luis 1:17:15

    The only thing I won’t allow her to do is to ever change me. You know, I’m just like my grandfather. I’m stubborn. You know I don’t need help in the shower. I don’t want help in the shower. Maybe that’s why they had an alarm in my bed. I couldn’t go nowhere at the hospital even though couldn’t walk.

    Luis 1:17:39

    They had an alarm on my bed. I must have been doing something that they didn’t like for them to put on an alarm on my bed. I had to be doing something. I’m like my grandfather, my grandfather was vicious. He liked the hospital. But you know, he didn’t want to because of his age. He had to be there all day. And he didn’t like that. So they were fighting at the elevator in his pajamas. Elevator here. Like, no, you can’t go not yet. He didn’t like that at all. I’m the same way.

    Bill 1:18:32

    Luis, thank you so much for being on the podcast. I really, really appreciate it. And I look forward to following you on Instagram and I’m wishing you well and hoping that you have a really good recovery, man.

    Luis 1:18:47

    Likewise. Likewise, thank you for everything you’re doing. I definitely learned a lot. You show me a lot. And I’m grateful. Thank you.

    Bill 1:18:59

    My pleasure. My pleasure. That’s a wrap dude. I will edit this. I will get it up and running. I will send you an email with the finished version. I will put it on Instagram. And you can share it with whoever you want and tell whoever you want about it as well.

    Luis 1:19:16

    All right, thank you very much.

    Bill 1:19:17

    Whose that? Is that your daughter?

    Luis 1:19:19

    My oldest. Hello, hello and my second daughter.

    Bill 1:19:24

    The whole family. Awesome. Beautiful. Thank you guys I appreciate it. Thanks for setting this up for me.

    Luis 1:19:30

    Thanks for talking with him.

    Bill 1:19:33

    My pleasure. Thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how different It can be to get the answers you need.

    Bill 1:20:02

    The road is both physically and mentally challenging from reclaiming your independence to getting back to work, to rebuilding your confidence and more. Your symptoms don’t follow a rulebook, and as soon as you leave the hospital, you no longer have medical professionals on tap.

    Bill 1:20:18

    I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you’re not alone. And there is a better way to navigate your recovery and build a fulfilling life that you love.

    Bill 1:20:34

    I’ve created an inclusive, supportive and accessible membership community called recovery after stroke. This only one support and resource program is designed to help you take your health into your own hands.

    Bill 1:20:47

    This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety and more. To find out more and to join the community head to recoveryafterstroke.com see you next time.

    Intro 1:21:02

    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 individuals own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:21:19

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:21:35

    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 1:21:56

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:22:21

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide however third party links from our website or followed at your own risk and we are not responsible for any information you find there.

    The post Nerve Pain After Stroke – Luis Diaz appeared first on Recovery After Stroke.

    1 hr 22 min
  • Vision Problems After Stroke – Candice Vogel

    Candice Vogel is working to overcome vision problems after a stroke. Ironically before the stroke, Candice was employed as a reading and vision therapist helping children do better at school by addressing reading and vision issues.

    Highlights:

    02:09 Introduction

    03:31 Stroke and Vision Loss
    15:40 Dealing With The Symptoms
    22:46 Ischemic Stroke
    31:32 Vision Problems After Stroke
    37:44 Emotional Recovery
    41:57 The Post-Stroke Deficits And Therapy
    48:36 Finding Somebody To Relate With
    56:06 A Better Therapist
    1:03:10 Level Of Empathy
    1:12:16 Emotional Challenges

    Transcription:

    Candice 0:00

    I would oftentimes have to by three, four hours in, close the door, turn the lights off, and sleep in my classroom with the lights turned off and hope that no one came to the door.

    Candice 0:13

    Because I just couldn’t go one more minute. Teaching, looking at a computer looking at print, my brain was just hurting. And I’d set an alarm and about 25 minutes later, the alarm would go back off and I would wake up and I would get a cup of tea and I would go about the rest of my day.

    Intro 0:41

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 0:54

    Hello and welcome to recovery after stroke a podcast full of answers, advice, and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:05

    I’m your host three-time stroke survivor, Bill Gasiamis. After my own life was turned upside down and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before, my recovery was my responsibility.

    Bill 1:21

    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:39

    If you enjoy this episode and want more resources, accessible training, and hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.

    Bill 1:52

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence into recovery after stroke.com To find out more after this podcast. But for now let’s dive in to today’s episode.

    Introduction – Vision Problems After Stroke

    Bill 2:09

    This is Episode 156. And my guest today is vision and reading therapist Candice Vogel. Somewhat Ironically, the stroke of Candace experienced caused her the same kind of vision problems that she had been working a lifetime to help others overcome.

    Bill 2:30

    Candice Vogel, welcome to the podcast.

    Candice 2:33

    Thank you for having me.

    Bill 2:35

    It’s my pleasure, thank you for reaching out and being willing to share your story, I know that it’s taken you some time to get ready to be able to share your story more publicly. And I think it’s a big step in recovery, because it does help to get things off your chest and put it out into the universe and see what comes back. Before we talk about your journey. From here on, tell me a little bit about what happened to you?

    Candice 3:11

    So it was a Sunday on January 12 2020. I was with my husband at my parents home. We were meeting with a contractor they had had some water damage. Prior that weekend, we had done a lot of trying to get water out of the home.

    Stroke and Vision Loss

    Candice 3:31

    And looking back it was a stressful situation. But I certainly didn’t expect a stroke to come out of it. I it was early in the morning at 10am. And as I was listening to the contractor speak and looking back and forth from my husband to my parents, and their reaction and taking in the information, I noticed what I thought was just the sun in my eyes, or my hair in my eyes and kind of brushed it aside.

    Candice 4:02

    And as I looked closely at my husband from across the room, I noticed that there was a very sudden loss of the vision and what I thought was just my right eye. He describes the look on my face as sheer panic. And he and I left the room and went to the laundry room and my parents home.

    Candice 4:25

    And I was you know, this close to him. And as I looked at his face, to me, what I thought was just my right eye, the left side of his face was completely gone. As if there had been a line drawn from the top of his head right down completely the center of his face.

    Candice 4:49

    It wasn’t dark or black. My husband had actually had a torn retina a few years prior and we were concerned that it was something like that and he kept out Asking me, what does it look like? And it was just completely blurred out.

    Candice 5:04

    I describe it as white like looking through an opaque shower curtain almost. And it was gone. And I was extremely frightened, but truly believed that it was an ocular event something that was, you know, wrong with my eyes, not a neurological event.

    Bill 5:29

    Is that the only symptom that you had?

    Candice 5:31

    Yes, I was the only symptom. So when I think about signs of stroke and the FAST acronym, I had no facial paralysis, I had no paralysis, no facial drooping, no problems with my speech and language, nothing cognitively.

    Candice 5:47

    It was just this sudden loss of vision, or this blurred vision. It was a Sunday I called my optometrist and, in December, the month prior, I had had an episode, which they called an optical migraine where there’s almost like an aura or you’re looking through a kaleidoscope.

    Candice 6:11

    And that was almost exactly a month prior. The doctors say now that they really don’t think that it had anything to do with my stroke. But when I called the doctor on Sunday, he said, I really believe it’s another optical migraine, I want you to lie down, rest, you know, take it easy, which was great advice.

    Candice 6:33

    And so that’s what I tried to do. Again, I was at my parents home, not in my own home. But it was a home that I grew up in and carefully made it to my bedroom. At that point, I started to get a headache and felt nauseous. But again, very much like migraine symptoms, kind of tried to just sleep throughout while my husband was finishing up with my parents.

    Candice 6:59

    As soon as he could, he came to get me and we just decided to drive home. Our home is located about 10 miles from my parents house. And the drive itself was the worst thing I’ve encountered in a very long time, the movement of the car, the speed, even though my husband wasn’t speeding, just the feeling that I had as if I were on a roller coaster and I were upside down.

    Candice 7:30

    Again, continued to feel so nauseous, my head was pounding, got home, and I really was unable to walk into my home. upright, I kind of hid behind my husband, my children were sitting on the sofa, and we’re concerned but I really felt like this is the worst migraine I’ve ever had. I need to get to my bed, we need to close the blinds and I need to sleep. You know, I still no other symptoms of stroke at all. And I at that point didn’t know that the vision that I was experiencing or that was related to stroke, either.

    Bill 8:13

    How could you I mean, you’ve never met anybody who’s had a stroke probably. And if they did, they didn’t have a vision issue with it maybe and they were probably older and all the things that we associate stroke to wouldn’t be you. And how old were you at the time?

    Candice 8:30

    53 I was training for a half marathon with my daughter. People would describe me as very health conscious. I’m very aware of my body and really felt like at that point in my life I would have known if something you know traumatic was happening. And I didn’t and honestly looking back at that time, there are times when I struggle with the feeling of I should have known.

    Candice 9:00

    I should have known that this wasn’t right, I should have gone to the hospital. And and I didn’t I treated it as if it were a migraine and honestly trying to you know my my family was helping me with ice pack on the front of my head heating pack on the back of my head. And I really feel like the amount of time I took to sleep.

    Candice 9:26

    Kind of because my eyes were closed I didn’t even realize I was still suffering with the vision issues. Sleeping was a way to escape from the pain. And, from you know, I wasn’t aware of the loss of vision or that it wasn’t coming back.

    Candice 9:46

    So I kind of just hold up like you would with the migraine and stayed in bed for most of the day and about this five-hour mark. I woke and actually felt like I could get out of bed like I was hungry.

    Candice 10:05

    My son made me a grilled cheese sandwich, I came into the living room, the other big concern for me at that point in time was the light sensitivity and the sound sensitivity. My husband and my son were watching television, it was much too loud for me, visually, I asked for the lights to be turned off.

    Candice 10:28

    But again, looking back that presented as a migraine to me. So I went to bed that night. I’m a school teacher. I’ve been a teacher for for 30 years. And ironically, I am a reading specialist. So I help children who struggle with reading and the visual processing skills that they struggle with.

    Candice 10:57

    So the next day was a Monday and of course, I had to go to school and said to my husband, I know I can’t drive but you have to take me to school I, I greet children as they arrive, I walk children to their classroom, it’s Monday morning, I have to be there. So chose not to put myself first.

    Intro 11:16

    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?

    Intro 11:32

    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.

    Intro 11:55

    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, they’ll help you take a more active role in your recovery. head to the website. Now, recovery after stroke, calm and download the guide. It’s free.

    Candice 12:18

    I showered and got dressed and tried to look in the mirror at my face and get ready and went to my husband and my daughter and said do I look okay? My visions kind of coming back, but I still had these deficits.

    Candice 12:32

    And he drove me to school, and as I walked about and did my daily activity, as I did every single morning in you know, smiling and getting children in and out of cars and greeting them.

    Candice 12:51

    I felt I just kept saying I feel off, I just feel off, I still had a headache, my vision was still not good. And I would notice some balance issues and just felt off. So after about 5-10 minutes, I said we’ve got to go to the eye doctor.

    Candice 13:16

    When he had said come in at any time. You don’t need an appointment, come right to my office. And so that’s what we did. And honestly, that is the point where I really started to feel concerned that something was wrong. But that was the 24-hour mark basically, about almost 24 hours to that point.

    Candice 13:38

    Arrived and he was wonderful. And he ruled-out a torn retina, any kind of optical issue. And he said I really want to do some further testing with you. And he did the it’s a test a visual test of your peripheral vision.

    Candice 13:56

    Basically, you look at the screen and you click a button every time you see a white flash of light. It’s a very long test. And it proved that I had no peripheral vision left at all, it was completely gone.

    Candice 14:18

    And when he showed us the results, he said I just need to let you know that this is not an ocular issue, your vision, your eyes, I had 20-20 vision at that point and maybe needed a reader a cheater, you know to read in from printed information.

    Candice 14:35

    He said this is a neurological event that has already happened and you need to go to the emergency room immediately. Do you know a good neurologist? And I didn’t know a good neurologist.

    Bill 14:50

    Who does?

    Candice 14:51

    At that point, I really still never thought stroke immediately thought it’s either an aneurysm or it’s a tumor that’s pushing on an optic nerve or something like that. That’s where my head went.

    Candice 15:06

    And again, you know, to back up, my mother in law had had a stroke in 2015. And so again, she was in her 80s presented itself with this call issues, some speech and some cognition.

    Candice 15:20

    My grandfather, you know, in his 80s, had had a stroke. But like you said, other than that, I just didn’t think that at 53, that I would go into the emergency room and be diagnosed with a stroke. So that still never came to mind when we were on our way to the hospital.

    Dealing With The Symptoms

    Bill 15:40

    And fair enough, I mean, there’s, it’s very fair enough would it make you feel better if I told you that I had numbness on my left side for seven days. And instead of going to an eye doctor, I went to a chiropractor, because I assumed that the numbness on my left side was as a result of my spine.

    Bill 16:02

    Because of the kind of work that I did, and because of the way that I was always at the chiropractor never really paid attention to his advice of be careful lifting this and stretch and do this and do that I never paid attention to him.

    Bill 16:15

    So I was just going there to get him to fix my problems with my back and what I used to do. So I just assumed the same thing. It was a chiropractic issue, the first test he said, okay, it’s not really obvious where the stuff is coming from the numbness is coming from. It was four days after I first noticed the numbness.

    Bill 16:38

    And then I made another appointment to see him on the eighth day after I noticed the numbness. And he said to me, whatever is happening to you is not related to your back. He didn’t say it’s neurological, but he said, you need to go to the hospital to get them to check it out.

    Bill 16:58

    And I said to him, I’ve got to work tomorrow, like I can’t go to the hospital. I got a really important, massive big day at work, and there’s no way I can miss it. I went home. And then my wife said, what what did the chiropractor say? I told her, he said, I should go to the hospital.

    Bill 17:15

    And she said, why didn’t you go to the hospital? Because I got to work tomorrow. And then she said, look, I’ll take you to the hospital, they’ll tell you there’s nothing wrong. And then you’ll get to work tomorrow and everything will be fine. I agreed with her. That sounded like a great idea.

    Bill 17:30

    And of course, when I got there, they found a bleed on the brain. And there was something seriously wrong. But like you, I couldn’t, have imagined in the world that there was a neurological issue A in my head and B, I’d never met any single person that had a neurological issue, that was my age, younger or even older, I’d never ever met anybody.

    Bill 17:55

    So I had no reference point to go. It’s similar to what that other guy said or what that other gal said, I never had some way to create a story that perhaps this was more serious than I thought. So I did that, and then even six weeks later, when now I knew I was unwell, I had another bleed, and I avoided going to the hospital again, because I was at work against doctor’s orders.

    Bill 18:26

    And I needed to finish this particular job before I made somebody drive me to the hospital. And that took four hours the second time to get to the hospital. And when I got to the hospital, I didn’t know my own name, I couldn’t recognize my wife, It was really serious, right?

    Bill 18:45

    So what we’re discussing is not uncommon in lots and lots and lots of stroke survivors, especially the ones that don’t get the symptoms that are associated to the FAST message because even if they’ve heard the FAST message, they do what you do they look for the closest similar person that they knew that had an issue that sounded like theirs.

    Bill 19:14

    And like you did you went straight to your husband’s ocular issue with his nerve. And migraines are such a massive thing in the world. They’re very, very common. And it presents like every other migraine you’ve ever had fair enough to assume that it’s a migraine.

    Bill 19:39

    The thing about it is like how can you have such amount of data to go back to and reference and then also, to make matters worse, you put other people first it’s the other thing that we do, it’s what you said it’s like the children need me.

    Candice 20:00

    That’s what I’ve always done. I’m an expert at putting everyone else first. And myself at the very bottom. I’ve done it, you know, for a very, very long time. So yeah, and so looking back on things, of course, being at a point now year and a half out and reflecting that I need to be able to release myself and give myself a little bit of grace for not, it seems so stupid now to not have known that something was severely traumatic.

    Candice 20:33

    And, that I should have addressed it in a different way. But again, I had no point of reference. And I do know now that I’ve recently in my education through this journey, have heard that they’ve added the BE FAST, B for balance, and E for eyes.

    Candice 20:52

    But that’s very recent. And I don’t even know that people know enough about the FAST acronym on its own in relation to stroke. But especially with this new, let’s add the B E, so that people will know that I do appreciate it now.

    Candice 21:08

    But so I live in a small rural community, and we were about 40 minutes from the hospital, my sister in-law worked at the hospital that we decided to go to and so she went ahead and logged me in so that they knew that I was coming in the ER, which made my the travel there knowing that they were going to receive me and get me in quickly, which is exactly what they did.

    Candice 21:36

    And my hospital is in St. Louis, Missouri. And so, upon arrival, they got me right into the emergency room and immediately did a CAT scan. I was really suffering from a pretty significant headache at that point. But they did the CAT scan and said, you know, we’ll just kind of see what happens.

    Candice 22:02

    And if it warrants an MRI, that’ll be the next step. And so, of course, it warranted an MRI. And when he came back, he did say, to the three of us, myself and my husband and my sister in-law, that it appears that it was a stroke. And I just, you know, again, couldn’t comprehend that that’s what they had found.

    Candice 22:24

    But and then he said, you’re going to have to have an MRI and I’ve had MRIs in the past, and I was more nervous and scared and apprehensive about having to have an an MRI in the head and neck because you have to be in that little cage. Than I was about just hearing that I had a stroke.

    Ischemic Stroke

    Candice 22:46

    And I started to cry. And he said, Oh my gosh, what is wrong and I said, I’m just really bad at an MRI, I’m really worried about the MRI. And of course, knowing also that I was internally afraid of what the results were going to be and everything that he had just told me but he had to give me something to take so that I could because it was an hour and a half long MRI with contrast and everything had a neck to check everything but and so I had that and it was an ischemic stroke.

    Candice 23:21

    So there was a clot that formed and it was it occurred in the occipital lobe of the brain. I had never heard of the occipital lobe of the brain. And in again, in my education and research through this journey. I’ve learned a lot about the occipital lobe. And many people think that it is just related to like color and shape and but honestly the occipital lobe, you know, it’s located at the base of the brain. It’s a you know, it’s very large, and it is responsible for all of the visual information that we take in all forms of visual information.

    Bill 24:09

    So it says on Google, it says the occipital lobe sits at the back of the head and are responsible for visual perception including color, form and motion. Damage to the occipital lobe can include inability to recognize the movement of an object, difficulties with reading and writing. Does that sound like you?

    Candice 24:31

    Yeah, and it’s everything. So for me, it’s visual processing, visual perception, visual memory, figure ground depth, perception distance, and primarily again, being unable to read. I was completely unable to read and I had no peripheral vision.

    Candice 24:57

    So it says if you have blinders on and if someone were standing next to me, I could feel them and sense them, but I could not see them. Once I returned home from the hospital part of my husband, you know, he would hold up. Okay, how many fingers am I holding up, just off to the side, completely gone can’t see any of that.

    Candice 25:26

    So I was in the hospital for three days. I had every test that they could possibly give vials and vials and you know, pints and pints of blood to draw every heart and cardiac test that I could, that they could give me, the bubble test, the echocardiogram and into scopic at echocardiogram to look at the heart from the top, you know, through my throat and on top.

    Candice 25:58

    Every single test was negative, every test was negative. So my stroke is cryptogenic. And after three days, and all the MRIs, and all of the cardiac testing and all the blood, even to test for something like an autoimmune disease, or a clotting disorder, I went in and did not have high cholesterol did not have high blood pressure, had no risk factors of stroke.

    Candice 26:26

    After the three day mark, the doctor came in and said, you know, unfortunately, it’s cryptogenic. And we will probably never know why you had it. Which is frightening. It’s frightening to have a stroke anyway. But for me, if they would have said it was your blood pressure, that’s something that I could control.

    Bill 26:50

    You could address it.

    Candice 26:52

    I could address it and and easily address it, but to continue to hear, we have no idea why it happened. And then at the same time, say, okay, you know, you’ve been released, there’s nothing more we can do for you Good luck. Basically, I passed every physical therapy assessment that they could give every occupational therapy, assessment, speech and language, cognitive evaluation, everything.

    Candice 27:23

    And as thrilled, as the therapists were to say, Oh, my gosh, you’re great. I was still left with these huge visual deficits. You know, the evening that I was admitted, my husband left the hospital and my sister in law stayed with me and my husband left the hospital to go and get some things, personal items for my stay, and, of course, had to tell my children and my parents.

    Candice 27:52

    Which was very frightening for him, because, of course, I had just been admitted it was all we knew at that point was I’d had a stroke.

    Bill 28:01

    How old were the children ?

    Candice 28:02

    My daughter, Alex’s 24, and my son was 18, at the time, at senior in high school, and my daughter is was in college, and then to tell my parents, you know, who are in their 70s and 80s, that their daughter is in the hospital and has had a stroke and share with my you know, my brothers and friends. And it was, just bizarre to share that information.

    Bill 28:31

    We tried to lie to my parents about that. I told my wife, so I was admitted to hospital late on a Friday evening. And I’ve been lied to my wife, because they did the CT scan, they revealed the blood clot. And because it was about 11pm, when they got back to me with the news, and I had sent her home to be with the children who were at the time where 14 and 11.

    Bill 28:57

    I said to Christine I said, look they haven’t done a scan yet. And they’re too busy. So they’re gonna do it tomorrow morning. And they just want me to wait until the morning. So do me a favor. When you wake up in the morning, drop off the kids and mom and dad’s.

    Bill 29:15

    But don’t tell them where I am. Just tell them that you need the kids looked after. And then come to see me at the hospital. And then she came to the hospital. And that’s when I said to her look, I wasn’t honest, I didn’t tell you last night because I wanted you to sleep or something like that.

    Bill 29:33

    And in fact, they found a issue on my brain and you we need to do another scan and an MRI and work out what it is. But of course by then she wasn’t able to really properly be dishonest to my parents. They could tell that she was not telling the truth. So we kind of let the cat out of the bag, but that was a really hard conversation to have with anybody.

    Candice 30:05

    Yes. And, of course, I didn’t have to have the conversation my husband did. But and then my children came, he brought them to the hospital. And of course, I was still having tests done. And they were doing a bubble test. And I was so sick from the pain medication that they were giving me for my headache.

    Candice 30:28

    My husband stayed with me the entire time, the three days that we were in the hospital and my children came to visit when they could. But again, after the three days, it was determined that it was cryptogenic.

    Candice 30:42

    And they were social worker came and said, Okay, we’re going to release you to go home, they did put a heart monitor on my chest that I would wear for six weeks to monitor in case that was an undiagnosed AFIB.

    Bill 30:44

    Atrial Fibrillation.

    Candice 31:00

    Yes. Which I have never had any issues.

    Bill 31:03

    Or maybe did they also tried to rule out the hole in the heart the PFO?

    Candice 31:10

    Yeah, and that’s what the bubble test will do. They put a fluid or water, it’s not water, saline into to see if it bubbles, and if it does, then everything was clear. So I did go ahead and have a heart monitor, and I was to wear it for six weeks. And so I did leave the hospital with that.

    Vision Problems After Stroke

    Candice 31:32

    The other thing that we had to really fight for and advocate for was addressing my vision, I really feel like that my end my you know, reading in particular, because it was as if I was just going to go home. And that was going to be it. As a reading specialist, which is my job, I oftentimes encourage parents to take their children for vision therapy. And we had to advocate for that for for me now.

    Bill 32:04

    So you left with the same symptoms, and there was no addressing of them?

    Candice 32:08

    Nothing, nothing. And so we asked for a prescription for vision therapy, before I leave the hospital just like you would for PT or honestly, they would prescribe that if I had left side paralysis, they would prescribe, you’re going to do physical therapy, you’re going to do occupational therapy, you’re going to do speech, language, cognitive therapy, even cardiac therapy, if you had a heart attack, get therapy for cardiovascular therapy.

    Candice 32:37

    I left with nothing unless you know, because we asked for it. And they were very, they’re like, we don’t even know a vision therapist in our area. And of course I did, because I recommend parents take their struggling readers. So there are three centers in our area. And they I don’t want to say reluctantly, but you know, we were pushing for it.

    Candice 33:02

    And my husband had done tons of research in the three days that we were at the hospital, and said that that was my best course where recovery was to get vision therapy, it’s neuro vision so again, I tried to explain to people, this is not an ocular issue, this is a neurological issue. It is how my brain perceives visual information, and makes sense of that. And that’s really difficult for people to understand.

    Bill 33:32

    I mean, they had the CT scan, they have an MRI scan that proves that something was happening in your head.

    Candice 33:38

    Neurologically, it has nothing to do with my eyes. It is how the brain interprets all and 80% of what we take in is visual information on a regular basis. 80% of what we take in regularly is visual information. And my brain could not make sense of visual information.

    Bill 34:02

    I think this is gonna be a really important part of this interview. Because that is one thing that people get stuck with, they leave hospital, they go home, and then there’s there’s that massive gap of okay, what do I do now? And I was one of those people I even missed out on the opportunity to have neuropsychological assessment when I left I had massive cognitive issues after the second bleed.

    Bill 34:25

    I mean, it started off with not knowing my own name and not knowing who my wife was. And then I couldn’t type an email, I couldn’t drive. I couldn’t finish a sentence. I couldn’t remember who came to visit me. And that was like that for about nine months, 10 months and nobody suggested, you need to have a baseline of where you’re at.

    Bill 34:50

    And then you need to know how the recovery is going in the future. You need to be able to look back and determine how far you’ve come.

    Candice 35:01

    And that’s hard to see when you’re going through it. It is hard to do that. So we left the hospital being true advocates for myself. And that is something that I am very passionate about is I’ve always been an advocate for children. And now I feel that I need to be an advocate not only for myself, but others who who suffer with stroke or whatever health crisis they may encounter.

    Candice 35:39

    Because it was what was best for my recovery, it was the only way and and I am such a firm believer in my I ended up going to two different locations for assessments, visual assessments, neurological vision assessments, and ended up with a woman who designed so she did my initial assessment and to see where my strengths and my weaknesses were.

    Candice 36:04

    And it was, so it was so affected that you know, percentile rankings go from zero to 99 percentile. So the 99 percentile is outstanding. And, and then age equivalencies, so for some of my visual perception and my skills, when they initially tested, my highest area was visual memory. And it was only at the 50th percentile, my lowest area was at the 5th percentile. And the age equivalent for that was nine years of age.

    Bill 36:47

    So you had a lot of ground to make up before you go anywhere near being where you were at the start of the.

    Candice 36:54

    And those numbers are what I deal with, I do a lot of testing on children and visual issues. And so I couldn’t read the report, obviously, because I couldn’t read anything. I couldn’t read a text message. I am a researcher and a questioner by nature, not only because I’m an educator, but that’s just how I process information.

    Candice 37:18

    And so I couldn’t come home and research on the internet, I couldn’t check out a library book, I couldn’t go to the bookstore, because I could not read any visual information. I couldn’t take in anything. And I have always known I was a visual learner, but especially after this process, because then I had to become an auditory learner.

    Emotional Recovery After A Stroke And Vision Loss

    Bill 37:44

    I’m curious, how do you deal with that emotionally? Like you’re talking very clinically, right now, there had to have been an emotional aspect to this for you most stroke survivors say, you know that it was very difficult emotionally.

    Bill 38:04

    And what most stroke survivors do is they focus on the physical recovery, because that’s the obvious recovery right? So you’re also then going I need to focus on my visual recovery, because that’s the part that is obviously missing. But how does the emotional part of it play out in your stroke?

    Candice 38:22

    I think that the emotional part, the thing was, it was so ironic. It was so ironic that I had this stroke and where it occurred, and what my line of work is. And again, I’m always advocating for children who struggle with reading and not just that they don’t like, they haven’t found a book that they like.

    Candice 38:44

    Honestly, with many, many children it’s a processing issue, it’s how their brain is processing, you know, printed information. I have BD reversals. Now. It’s as if you know, you think about people who have been diagnosed with dyslexia, I transpose letters from the end of a word to the beginning of a word, I look at a line of print, and it’s gone there are only three words on that line of print.

    Candice 39:11

    I have to use tracking, I have to use all of these modifications, but emotionally, I think that I felt just like any other person who suffers a health crisis I had complete and utter fear that it was going to happen again. And that next time, it would be debilitating, or it would kill me.

    Candice 39:36

    I had so that fear, the fear of the unknown. You know, in the hospital, I told my husband, well, I’ll go back to work. I’ll go back to teaching just even if it’s half days, in about four weeks, you know, just minimizing what had happened, and I think for me minimizing it because it wasn’t physical. It wasn’t a speech language, I need to recover from this very quickly.

    Candice 40:03

    Because this is not like when my mother in law had her stroke, and she had to learn how to, walk again and use her fine motor skills. And so I was telling myself and I believe minimizing how the severity of it and comparing it to other types of strokes and then probably perhaps mine was just not so bad.

    Candice 40:29

    But fear and uncertainty and then the irony of it all, and then feeling that lack of that sense of being out of control, because I couldn’t figure out why it had happened. So I had no control. So for me, then it was, you know, a huge change in my diet was already really good. But that’s the direction I went, because I could control my diet, I could control going outside for physical movement.

    Candice 41:06

    With my stroke, and I hear this on your podcast with people all the time. Mine is very hidden. It’s a very hidden disability, you can’t see that I have left side paralysis. You can’t see what’s going on in my brain. So even a year and a half out, oh my gosh, three days after I got home from the hospital, people would come to visit.

    Candice 41:27

    They’re like, well, you look great. And you sound great. And they had no idea what was going on neurologically in my head, the headaches, the fullness, the ringing in my ears, all of the neurological symptoms that from a brain injury that we all experience. I struggled with all of that. And on top of it, I had the vision.

    Bill 41:53

    So right now, what are you left with? What do you still have?

    The Post-Stroke Deficits And Therapy

    Candice 41:57

    So I am a year and a half out. I did vision therapy, even though again, it wasn’t covered. I had to fight. And I had to write letters of appeal. My doctors wrote letters of appeal for me, vision therapy is not covered.

    Candice 42:17

    And again, my fight was and I’m advocating for the fact that this is a neurological issue. if I needed PT they’d write me a prescription if I needed any of that. But they would not cover it, insurance would not cover any vision therapy.

    Bill 42:34

    So do you still have vision issues?

    Candice 42:38

    Oh, yes. Now I’ve made huge progress. But I’ve made huge progress because of the work that I’ve done. So I started therapy in January about two weeks after my stroke. And I continued that for eight. Basically, eight months, I did vision therapy in my home five days a week, every single five days, I would work for roughly an hour on my own with the protocols that had been provided.

    Candice 43:13

    And then I would go see my therapist, one day a week for an hour. And every time that I thought oh, I have that this, she would give me another activity. And that would prove to be that much more difficult. And I would feel like I don’t have this simple things like throwing a beanbag into a bucket or a basket that she held, being able to touch my nose and touch it that on a on a poster board. My midline had shifted, we all have an imaginary midline.

    Candice 43:46

    And my midline had shifted so everything was off. I had no figure ground. So you know, the I Spy Books that maybe your boys had, where it’s an it’s all of those pictures and you’re supposed to find the shovel? I couldn’t do anything like that, because visually, I could not distinguish between all of those shapes.

    Candice 44:10

    I did a lot of large print crossword puzzles, large print, word searches. mazes that you would give a kindergartener, you know, with a crayon or marker, and I couldn’t stay in the lines. And all of that was I had to do so much work. I couldn’t drive obviously, because of my visual deficits.

    Candice 44:36

    But so now a year and a half out, I am able to drive short distances, I don’t drive at night. I don’t like to drive in the rain. But I really thought that I would read and read well before I would drive, and that isn’t the case. And it’s because when you drive, you’ve got all of your vision to use and when you read, it’s just what is right in front of you.

    Bill 45:01

    So you’re a visual learner, the amount of your identity that is stuck around vision, obviously because of the work that you’re doing, and because of what happened to you, is pretty extreme. I’ve never come across anybody who will talk about vision to the extent that you can.

    Bill 45:20

    And it’s fascinating that you had to have that condition to you. I’m going to chuck woo woo comment out there, maybe the universe is telling you something about the next level of your learning, of your level of understanding of what it takes to perceive information.

    Bill 45:42

    So if you’re struggling reading, and that has been one of your biggest skills and teaching people how to read and overcome reading challenges. Do you get a lot out of listening to books because I have always struggled to read, I just never enjoyed it. I was boring, especially when you’re looking at black and white words, or black words on a white page. And I get a lot out of listening to books. What’s that like for you?

    Candice 46:14

    So it’s the exact opposite. I have had to really learn to train myself to be an auditory learner. I just recently listened to a podcast that you did. And you mentioned I can’t think of her name. But the book was My Stroke of Insight.

    Bill 46:36

    Jill Bolte Taylor.

    Candice 46:37

    Yes, yes, yes. So in when I came home from the hospital, all I wanted to do was soak up all the information I could about stroke. And again, I couldn’t went to the bookstore with my husband, who was very dear and kind enough to say, what about this, and there’s really not a lot of great books out there, honestly.

    Candice 46:53

    And I didn’t feel like it pertained to me and my individual story. But, we found that she had a book at our library, which had five CDs that you could listen to. And so my husband checked out the book, and I listened to the CDs. And that was my first education into what I was going to experience had experienced.

    Candice 47:21

    And the first person that I could connect with, as far as her story goes. And I had to do that auditorily. And all I wanted to do, I would listen to it. But I just wanted to look at the book and follow along. And I couldn’t do that. So turning to audible people were like, get audible get audible.

    Candice 47:42

    I can listen to it. It’s just not my mode of learning, but I am getting better. And again, in my email I mentioned to you your podcast, being able to find your podcast, and listen to people’s stories was transformative for me. And the first time and I really wanted to go back and be able to reference this young man, the first time I ever heard anyone on your podcast speak to a visual issue like I have.

    Candice 48:12

    He was a young man, maybe in his 20s. And he was at work one day, and he had this issue with his vision. And my husband and I were outside and I had to stop it. And I said, Oh my gosh, there’s someone on the podcast, who has vision issues like me. And that was just everything for me. It truly was everything for me.

    Finding Somebody To Relate To

    Bill 48:37

    Why was that everything for you? How is somebody else having vision problems good for you?

    Candice 48:42

    I know. And it’s the same thing. So my hope is that my story and sharing this with you today will help somebody, whether it’s a caregiver, or someone who’s experienced it, because I was able to connect and identify. That’s why that helped me. I was able to identify with someone else who had experienced something like me.

    Candice 49:03

    Because I didn’t know anyone every stroke story that I heard or read about or I wasn’t able to read it, but you know, my husband was sharing with me, everyone’s was and they are all different. It doesn’t matter. neurologically, if you’ve had a neurological event or not all of our stories are different.

    Candice 49:23

    But that having someone who had their vision affected even though it sounds terrible to say, Oh, I’m so glad that he had that stroke and it occurred there and affected his vision that resonated with me and and helped me.

    Bill 49:40

    You’re not saying you’re glad you found that because you’re glad they had a stroke. You would prefer not to have ever found a stroke podcast you would prefer never have anything in common with people who have had a stroke and you prefer nobody ever had a stroke.

    Bill 49:54

    So I totally get that because it was the podcast that made me feel Okay, normal. I don’t know what the word is. But I started it because I didn’t know enough people that had overcome what I was going through. I had been through what I went through, and no one understood me. So now I have more than 150 people who understand me, that I’ve spoken to directly. So it is some kind of relief that I’m not alone and I wish none of us were in this group.

    Candice 50:28

    Right. And I hear you say that, and it is. So when I felt when I came home, and people in my family had to go back to their reality. I felt so isolated, and so alone. And again, I couldn’t even watch television to distract myself. I couldn’t get on the internet. I couldn’t research and Google, I was supposed to be resting and sleeping and I know that now.

    Candice 50:53

    But I do believe that I pushed myself through so that I could feel some sense of normalcy. I couldn’t drive. I couldn’t, you know, that independence was taken away. And at the same time, again, I still find that I minimize my stroke, because I’m comparing it to other people.

    Candice 51:15

    And I think, well, it’s not, you know, it’s not as bad as but then I’ll hear someone who has a physical issue, and they say, Oh, my gosh, but at least I could read, you know, I’d never be able to not read. So that’s something that I chuckle about. And I think that that’s interesting that all of our perspectives are so different.

    Bill 51:36

    Any stroke is a bad one. Any stroke is not a good thing. And, that’s unfortunately, the way that we judge lots of things in life is how it looks on the outside, you know, there’s very little reflection on what’s going on in the inside. And people don’t know enough to ask the right questions about what’s going on on the outside, you know, they don’t know about neuroplasticity, like we become so aware of and we learn about.

    Candice 52:04

    I’m an expert about neuroplasticity and I am as such a firm believer, I was someone who every time I went to a neurologist appointment or a neurological ophthalmologist, I and you speak to this all the time. Is that timeline, that recovery timeline, and I’m against the idea of a recovery timeline.

    Candice 52:28

    I feel very strongly about that. Are there times when I feel like I’ve hit a plateau? Yes. But then I also believe, okay, what can I do now to get Oh, maybe it’s just a plateau. That doesn’t mean that my recovery has stopped. I believe that I will continue to build new pathways and reconnect and heal my brain. Sometimes I think all my gosh, it’s been a year and a half. And other times in the same breath. I can say it’s only been a year and a half.

    Bill 53:03

    Yeah, that’s right. Yeah, that’s exactly right. And that’s the thing, when I’m coaching people to get through this is I really tried to get them to say, do not place a timeline on it, you’re sure to be disappointed with stroke. Unfortunately, if you’re basing your how far you’ve come on the data that you get there, that’s going to be disappointing.

    Bill 53:23

    Just don’t do that if you can avoid it, you know. And then the other thing I like to tell people is, is that, you know, with neuroplasticity, you can adjust and overcome, even deficit even if you’re not walking correctly. It’s still neuroplasticity that’s helping you become more mobile or find a way around that inability.

    Bill 53:43

    So even with your vision, if it doesn’t get back to 20-20 and have all the peripheral vision or whatever. It’s neuroplasticity still finds a way to help you get along or get around with the way your vision works now and the brain adjusts, the body adjusts and everything eventually adjusts.

    Bill 54:05

    It’s not to say that it’s the same or perfect or back to normal, it adjusts and you make do now, I don’t know whether that’s comfort enough for some people. But like that’s, what sometimes we’ve got to hope for we’ve got to hope for finding a way to overcome the deficit in a way that still gets an outcome which is supportive.

    Candice 54:27

    So I do use a lot of modifications. And again, these are modifications that I would put into place with a struggling reader. You know, I would suggest these things to teachers in the classroom. I would suggest these things to parents I have to use magnifiers line guides to help me go line by line.

    Candice 54:48

    It’s really important to me, I have to not get lost on a page. I have to practice a lot. But if I were just unable to Say, you know, just pick up a magazine and read it. I can’t pick up a textbook and just read it. It takes me a lot of time on a computer, I have very large font size, I have a colored cursor that is huge.

    Candice 55:17

    I use a lot of text to speech. Because the amount of neurological fatigue that I feel in just reading three emails where I would have just knocked that out in my classroom on a regular basis, it takes forever. So modifications highlighting text, as it’s read to me, had been vital. For me getting back to the things that I was used to doing before.

    Bill 55:45

    I’m curious, so the one of the reasons Jill Bolte Taylor is so special, is because she’s a medical person that’s had a stroke, and she’s applied her craft, to stroke recovery, because it was ironic for her as well. She was researching the brain because her brother was unwell.

    A Better Therapist After The Stroke And Vision Loss

    Bill 56:06

    And she wants to understand how to support people with neurological conditions like schizophrenia and that type of thing. So you sound like, you’re going to be a better vision therapist, because of you experience, does that resonate? Is that, right?

    Candice 56:30

    It does. And people say to me all the time, I can’t believe that you are, you know. So just to fast forward a little bit I stayed home this, that my stroke happened in January, and I stayed home through COVID. And you know, secretively, I say that I was not thrilled with a pandemic and a shutdown.

    Candice 56:54

    But for me, my family was home with me during my recovery, which just warmed my heart. And even though they were all doing their own things, whether it was schoolwork or our work, I could go outside in my garden or go tinker about. And we were all here. So that was during my recovery. I stayed home against everything in my being, I chose not to go back to school.

    Candice 57:22

    And again, I’ve been teaching for 30 years it’s what I do. And I felt as if I was disappointing, everyone, I was disappointing. My principal, my administrators, the children, the parents, I was letting everyone down because I was not returning. And that decision to do so was a heart wrenching for me. Initially, I thought, oh, I’ll go back half days, it won’t be a big deal.

    Candice 57:51

    And I had to, again, put myself first I would tell a friend to put themselves first I would say, you know, you’ve had a health crisis, all the things that you would tell a friend to do in a very meaningful way. But I would never tell myself to do that. But I did choose to stay home and I did not go back for that school year.

    Candice 58:13

    In August, once school rolled around again, even with COVID. And going back, we were full in person. I was bound and determined to at least try. I was eligible for retirement two years prior. And but and we talked about and and discussed a lot. But I decided to go back to school.

    Candice 58:35

    And a lot of people said, You know, I don’t know that that’s a good idea. Maybe you’re not thinking about your health. And all I had done was think about my health. But I had I at least had to try. So I went back it was very difficult. I I would oftentimes have to by three, four hours in close the door, turn the lights off, and sleep in my classroom with the lights turned off and hope that no one came to the door.

    Candice 59:07

    Because I just couldn’t go one more minute. Teaching, looking at a computer looking at print, my brain was just hurting. And I’d set an alarm and about 25 minutes later, the alarm would go back on off and I would wake up and I would get a cup of tea and I would go about the rest of my day. And I do feel like I pushed myself and there were times I would come home and just the look on my face. I would just have to go sleep.

    Bill 59:44

    I’ve got to say that I’m going to talk about that you say you push us up that is really important. I know. There’s a time when you shouldn’t be pushing it pushing yourself in stroke recovery.

    Bill 59:54

    But then there comes a time where you have to push yourself and you have to break through the barriers that you have set for yourself, either mentally, or a doctor has said for you emotionally, or you’ve got to get to those barriers, and you’ve got to push them. And you’ve got to see, what happens when I do? Do I suffer? Do I suffer and then recover a little bit? Do I gain some ground? Do I have a setback? If you don’t do that, you’re never gonna know.

    Candice 1:00:21

    Yeah, and I’m glad to hear you say that, because it validates because there are many times when I second guess and I’m like, I pushed myself too hard. I had, you know, my neurological ophthalmologist, who did my vision therapy said, I do not want you to get to the point where you redline and you, you push, push, push, push, push, and then you have a complete setback, because you’ve pushed yourself too hard.

    Candice 1:00:46

    But you’re exactly right, I had to determine I had to figure out on my own, what was too much. And then step back, some days, I would go and have a great day at school, and I’d be able to come home and have dinner with my family. And other days, I wouldn’t be able to function.

    Candice 1:01:03

    It came to a point then where I felt like for a long period of time, I was spending my weekend recovering, to get ready to go back five full days and do it over again and then put myself in this cycle. So I started taking half days on on Wednesdays just to break my week up a little bit.

    Candice 1:01:20

    And that really helped me get through the remainder of my school year. In February, I did announce my retirement, I think prior to stroke, I would have gone maybe two more years, but really felt that it was time. And I also know that I went out of my you know, career as an educator.

    Candice 1:01:41

    At the height of my career, I wasn’t a teacher who someone said, Oh my gosh, she really should have retired five years ago, you know, I wasn’t that person. But again, perspective, giving myself perspective, I had gone through this, I was finally putting myself first I had come this far, I had done all of these, you know, remarkable things in my recovery.

    Candice 1:02:05

    And so I did retire and then that was in May, with the end of my just just past May retired. And about two weeks later, I signed a contract to continue teaching part-time at a different school. So now I am officially retired, but I call it this soft retirement. And yesterday for the very first time I presented in front of an audience of other teachers, because I help teachers teach the best way to teach readers.

    Candice 1:02:41

    20 new peers colleagues of mine, and presented a full presentation on reading and what it will look like during the school year. And at the very end, I just ended it by saying on a personal note, and told the group of individuals that I had had a stroke, which was huge for me. And of course, immediately the audience is like, Oh, you know, they’re gasping and no one knows it’s very hidden.

    Level Of Empathy

    Bill 1:03:10

    I’m gonna give you a little bit of advice first. But before I do that, and not advice that this is not me preaching to you how you should go about your life, but something that I think would be amazing in those presentations. But before that, I want to go. So I want to I want to ask you to reflect back on your time helping other people learn to read and overcome reading difficulties. Did you really, really deeply know how much of a struggle it was for them? Or did you have a good idea? And did this stroke condition really enhance your deep understanding of how they were suffering?

    Candice 1:03:53

    I felt like I did only because the training that I have received has in reading and helping a struggling reader has been centered on the brain and the processing. But and again, I’ve said it so many times advocating for children and teaching others about children who struggle was I really able to I feel like I was able to recognize and help analyze information and diagnose reading difficulties with children.

    Candice 1:04:33

    But to clearly feel what they were feeling with reversals and seeing words as they see words. No, not until I was and I shared that with a child, which was also very enlightening. You know, I was gone for a long time and my students would say, Where is she and when is she coming back and I have one student who I had worked with.

    Candice 1:04:57

    He was a third grader. When I had my stroke, and he kept saying, When is she coming back to school? And a friend of mine said, Well, she’s having some difficulty with her eyes. And he said, well, why doesn’t she just eat more carrots and come back to school. But the following school year, he brought an assessment down to me that he had done to share with me and he had done remarkably well on it.

    Candice 1:05:22

    And he just wanted to share his success. And I said, You know, I know how much you have struggled when I’ve worked with you. And I need to share something with you. Now, that issue that I had with my eyes, I now am a struggling reader just like you. And the look on his face was just priceless, of course, you know, he’s a child.

    Candice 1:05:42

    And I said, I know what you are going through when it’s difficult, I know that you’re not just giving up. And you’re not just avoiding the task, I understand. Because I’m unable to pick up a book and read it unless it is, you know, large print, or I have to read it and reread it and read it again.

    Candice 1:06:06

    Because now as a reader, instead of just relying on my meaning, which I have meaning because you know, I’ve been a reader for a very long time, it is so visual, because I’m trying demystify the code of print and text, and I read, and then I reread, and then I reread again, and to hear me read aloud is painstaking, because it is word by word.

    Candice 1:06:36

    And that’s all very, very new. So to share that with this group of individuals that I shared with yesterday. That’s a new platform for me to really talk to people as a person who struggles with significant visual deficits in reading. So it is again, ironic, and new perspective and, interesting.

    Candice 1:07:05

    So my hope for the future is that I can continue to share that message, you know, I’m not on Instagram, I’m not on Facebook, I would love I can look at pictures on Instagram, but I can’t read the caption. So even if I had an Instagram page, I talked to my daughter, you know, or my son about getting an Instagram.

    Candice 1:07:26

    I’m not able to navigate that world like others are. So I add a point where I’d like to share my story, as I’m doing with you, I don’t know how I will continue to do that, you know, I’ve never participated in a support group.

    Bill 1:07:47

    You’ll find a way. Now, that was gonna be my advice/idea me planting a seed in your head, it was basically what was going to be And, look, there are people that are completely blind that are using the social medias, and the internet and all that kind of stuff.

    Bill 1:08:08

    And, therefore, I, I feel like you’ll be able to find a solution to overcome that. And you can do video presentations, just short snippets that you can get somebody else to post for you. And then they could read back the comments to you. And you could respond to those comments in exactly the same way.

    Bill 1:08:28

    So if you if you really wanted to do that, there’s definitely a way to overcome it and it’s early, and I understand. So there’s no timeline on this. But it’s just me planting seeds. And the reason being is because my community wants to hear from people like you. Because you have both perspectives, you have the I used to help people in this area, and now I’m one of those people that needs help in this area.

    Bill 1:08:52

    It’s very rare, and it’s much needed. And your version of the way that you would tell the story would be completely different to a therapist who’s never had a vision problem telling the story and not to minimize what they do because you are one of them, and that’s amazing work.

    Bill 1:09:11

    But it is a completely different story when the therapist is also experiencing the same problem. So from that little perspective, if I can do anything and encourage you to do anything, is at some point in time, is find a way to share this gift that you have which is both insights of both ends of the spectrum.

    Bill 1:09:34

    And and you’re going to be able to make a massive difference in people’s lives and enhance your, your purpose. Uplift people take your career to the next level and become a real leader. Not that you already weren’t but become a real leader in this space.

    Bill 1:09:49

    And it’s bizarre and strange, but that’s really where it’s at. And I tell you because there’s gifts in Every stroke survivors stroke and one of the most amazing things that stroke survivors do, which I find bizarre, and I was one of them is that they immediately want to help other people. And that’s what we need.

    Candice 1:10:13

    Right. And that’s been my, my profession, you know, I’m in a helping profession. So I think it was just the time and again, telling the story and hearing it. Again, from that perspective of being a reading teacher is interesting. But, you know, I just, I, I just wasn’t at that point yet.

    Candice 1:10:39

    But I do feel like I am now you know, it’s interesting, one year after, you know, on my anniversary, I had told myself, Oh, my goodness, it’s coming up on a year, it’s gonna be a year, and I told myself to take the day off and take some time for myself.

    Candice 1:10:56

    And, you know, January 12, came, and I went to work like any other day and then realized in my classroom, Oh, my gosh, it’s January 12. And I was in tears. And I called my husband and said, I was going to take the day off, and I didn’t even realize it was today.

    Candice 1:11:15

    And in a way, I think that’s a good thing. But that shows, again, recovery and rehabilitation, I think, mentally and emotionally, that I wasn’t so fixated on the day that I was some healing that, yeah, it’s a day to day, I’m a projector into the future. Or I like to live in the past and mull over and overthink every decision that I made.

    Candice 1:11:48

    And why, you know, there was no answer to why had a stroke. So it must have been something I did myself too much stress or, you know, something, because otherwise, they would have found an answer. But I really am trying very, very hard. And it’s so difficult to stay present, and just live each day and do the things that I love to do and enjoy things that I can do.

    Emotional Challenges

    Bill 1:12:16

    You’ll get better at that, it does take time to really learn how to become yourself again, and how to get out of the habits that you’ve had before. And, you know, we hear about the emotional challenges that stroke creates. So that can be a distraction from being present.

    Bill 1:12:39

    Because if stroke does anything it brings to light all the stuff you have never dealt with in the past. So that’s easy to distract you from the present, right. And then you actually have physical proper deficits that brings you into the present, but it brings you into a not so nice present, because I can’t do this, and I can’t do that.

    Bill 1:12:57

    So that takes it away. So then, you know, you might not have had a good night’s sleep. So that interferes with your present and being able to stay present you know.

    Candice 1:13:07

    I really struggle with sleep.

    Bill 1:13:09

    Yeah, right. And then, if you can’t be physical, and you can’t do all these things that struggles with your present, you’re looking for ways to distract yourself. But what does help to bring you to be present is doing a gratitude practice and practicing what you’re grateful for today.

    Bill 1:13:28

    Today’s been a shit day. But I am grateful for these things that lifts your mood, that changes your heart rate, that decreases the cortisol level in your body that actually starts training your brain to start focusing on what’s good about this, even though there’s lots that aren’t.

    Bill 1:13:45

    But then you you shift from being constantly focusing on stuff that’s not supporting, and you actually go into stuff that is supporting and you start to see the light at the end of the tunnel of this emotional roller coaster that we go on. So gratitude on a daily basis supports that and what is a gratitude practice?

    Bill 1:14:03

    It’s just, I do it at night before I put my head on the pillow or while I heads on the pillow. I’m grateful for the work that I did the people that I met my family, my friends, and whatever comes to mind that I’m grateful for which the true gifts in life and none of it is I’m grateful for the opportunity to do more hours at work or win the lotto or do any of that stuff. Like it’s all about just the simple things that come to us that are free, that really make life better if you focus on them.

    Candice 1:14:13

    And for me it was so again you said like the physical being able to go outside and just breathe in fresh air. Or, you know, I couldn’t go for a walk by myself because what looked like cracks on a sidewalk. Just normal cracks to you, to me looked like it was elevated and dangerous to walk on, my husband would have to get down with his hand and go over the crack and say, Okay, this is just a normal crack in the sidewalk.

    Candice 1:15:07

    But to me, it was scary because I thought I was going to trip and fall. So to get to a point where I could walk on a regular basis, that I walked four miles every single day with my dog. That was so therapeutic, I listened to podcast I did things that brought me joy, the simplest things that I could find that would get me out of my head, and really, truly help with that recovery. Because there’s just so much to recovery. It’s not just the vision. It’s not just the physical. There’s so much to the recovery process.

    Bill 1:15:47

    I call recovery three tiered. And in those tiers, there’s other levels. But in the top tiers, there’s the emotional recovery. There’s the physical recovery, and then there’s the psychological recovery.

    Candice 1:16:01

    Absolutely I agree with that.

    Bill 1:16:02

    And if you’re focusing on one, only, you’re missing out on the other two, but you can’t be just focusing on two and missing out on one. It’s not a complete recovery, you’ve got to focus on all three. And this is what happens when I asked people about where they’re missing out on.

    Bill 1:16:16

    And obviously, like, obviously, they’re doing the physical stuff, they’re recovering the stuff that’s important. And that’s why I asked you, well, that’s obvious. And that’s why I asked you about your emotional state early on in the pieces, because I could tell the first thing that you focus on is what’s missing? That’s, that’s obvious is my vision. If I get that back, things will be okay. But what if you don’t get it back? And then what? what are you going to do then?

    Candice 1:16:42

    Exactly. And I still, you know, I still get overwhelmed, I still have many moments where, you know, I just cry, not because just because it’s an overwhelming emotion. And I was a crier before my stroke. So I’m not just going to blame that on stroke, but it’s still an emotional journey, you know.

    Candice 1:17:08

    So and that’s just something that I’ll continue to try to heal and feel. But I am a firm believer also, that if I have those feelings, whatever those feelings are, if they’re a if it’s anger, or sadness or happiness, to feel it in the moment, but not let it hinder me from moving forward.

    Candice 1:17:30

    You know, again, a cryptogenic stroke, I could have been curled up in a ball and not wanting to leave my bed or leave my home because of that crippling fear of what if it happens again, and I don’t know why it happened. So I would have to make a list of things I can control and things I’m unable to control, and focus on that.

    Bill 1:17:53

    Yeah, focus on what you can control. That’s the perfect antidote to anxiety and it’s and depression. And that’s what mindfulness is, it’s doing in the moment what I can do, and doing that as best as I can. Because that’s a path to recovery as well. It’s not about, I can’t do that, and therefore I need to worry about what I can’t do, just do what you can do.

    Bill 1:18:15

    And then other things might come in the future, there might just appear one day, as being something that you’ve overcome that you didn’t realize you were overcoming, because you were focusing on overcoming whatever it was, whichever deficit it is, this conversation for me is quite fascinating.

    Bill 1:18:32

    And I’m really glad that you reached out and connected and made a point of talking about vision because even though I’ve touched on vision, as you know, there’s not a lot of people in my podcast, who have been able to really share stories of vision, I could probably think of about five or six episodes where vision is an issue.

    Bill 1:18:59

    And those people are challenged by it on a daily basis. So this one is going to really make it possible for a lot more for those people to relate to somebody else again, to to relate to somebody else, somebody from your background, I think is even more special. So I know you’re not on social medias, but some people might want to choose to reach out to you.

    Candice 1:19:24

    Oh, absolutely. I would love that.

    Bill 1:19:27

    Is there a way that we could get them to reach out to you?

    Candice 1:19:30

    Yeah, if email is okay. My email address is [email protected]. And I have all the modifications I need on my computer as far as my email is concerned, I’d be so happy to correspond and connect with people that way and again, hopefully as I continue my recovery, and my journey, maybe one day, I’ll have an Instagram page or something like that.

    Candice 1:20:06

    Again, if I feel like I’m finally at a point where I feel as if my story is something I’d like to share, again, even if it helps one person, just as that young gentleman did on the podcast that I mentioned before, it was as if just a light bulb, the emotion that I felt over hearing him say, it affected my vision was just, it just meant the world to me.

    Candice 1:20:37

    And so and again, it’s so validating just to hear about other people’s stories, and even if they’re not really like a division, and still, the neurological aspect of it all, helps connect. So I’d be happy to, to correspond with anyone who wanted to, to reach out and I can’t thank you again, enough for doing what you do and and having a platform in which to share stories, because I think those personal encounters can make all the difference in recovery.

    Bill 1:21:17

    My pleasure, thank you for saying so. And thank you so much for being on the podcast.

    Candice 1:21:22

    Thank you.

    Bill 1:21:23

    Well, I hope you enjoyed that episode. Thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish there was just one place you could go to for resources, advice and support in your stroke recovery? Whether you’ve been navigating the journey on your own for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:21:45

    This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms do not follow a rulebook and as soon as you leave hospital, you no longer have medical professionals on tap.

    Bill 1:22:01

    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you are not alone. And there is a better way to navigate your recovery and build a fulfilling life that you love. I’ve created an inclusive, supportive and accessible membership community called recovery after stroke.

    Bill 1:22:23

    This all in one support and resource program is designed to help take your health into your own hands. This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety, and more. Now to find out more and to join the community, just head to recoveryafterstroke.com See you on the next episode.

    Intro 1:22:48

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:23:05

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:23:21

    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 1:23:42

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:24:07

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Vision Problems After Stroke – Candice Vogel appeared first on Recovery After Stroke.

    1 hr 26 min
  • Life-Long Stroke Recovery – Jo Ann Glim

    Jo Ann Glim experienced a hemorrhagic stroke at age 52. She is the author of the book Trapped Within which was written to help and encourage other stroke survivors no matter where they were in their recovery.

    Socials:

    https://www.joannglim.com/
    https://www.facebook.com/JoAnnGlim.Author/

    Highlights:

    02:20 Introduction

    07:00 A Hemorrhagic Stroke
    13:40 Memory Challenges
    18:28 There Was No Fear
    26:48 Attitude Change
    34:14 Always Recovering
    40:28 Don’t Limit Yourself
    45:35 Don’t Count Me Out
    46:58 Trapped Within
    53:45 Importance of Exercise

    Transcription:

    Bill 0:00

    How long did you say your stroke recovery took? Or are you still chasing better health or a better outcome? What’s that like?

    Jo Ann 0:10

    I think you’re always recovering. There’s things that I know I can’t do but like you said, life gets in the way. The way I look at myself right now is I’m a million-dollar woman. I’ve got a pacemaker, I broke my hip and had a hip replacement. My husband told me I was a high-maintenance woman and he said why don’t you just go to the store and go shopping.

    Bill 0:45

    Do something low-risk.

    Jo Ann 0:48

    Yeah exactly.

    Intro 0:52

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:05

    Hello, and welcome to recovery after stroke a podcast full of answers, advice, and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:17

    I’m your host three-time stroke survivor Bill Gasiamis. After my own life was turned upside down and I went from being an active father to being stuck in hospital when we if I wanted to get back to the life I loved before my recovery was up to me.

    Bill 1:31

    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:49

    If you enjoy this episode and want more resources, accessible training and hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.

    Bill 2:02

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence into recoveryafterstroke.com To find out more after this podcast episode. But for now let’s dive right into today’s episode.

    Introduction


    Bill 2:20
    This is Episode 155. And my guest today is Jo Ann Glim. Jo Ann experienced a hemorrhagic stroke aged 52 and wrote her book trapped within to help other stroke survivors. Jo Ann Glim, welcome to the podcast.

    Jo Ann 2:36

    Thank you.

    Bill 2:38

    My pleasure. Thank you for being here. We finally made it we had one attempt a week ago. And it just goes to show that if at first you don’t succeed, try try again.

    Jo Ann 2:53

    Absolutely right. You never give up.

    Bill 3:01

    Exactly right. And we weren’t gonna let technology get in our way of catching up. Jo Ann, can you tell me a little bit about what happened to you?

    Jo Ann 3:16

    I was 50 years old. No actually I was 52. And my husband and I had just moved to Florida. He had retired earlier that year. And so we had known all along we’re going to move to Florida we just could not take those cold Chicago days anymore.

    Jo Ann 3:42

    And so we did. And for six months, it was wonderful. We’d get up in the morning say okay what are we gonna do today? And we would just go out and have a good time and travel all over and see different things there was one night we sat and watched the news and they said that there was a launch going up over Kennedy Space Center.

    Jo Ann 4:08

    And that’s totally on the opposite side of where we are. We’re on the Gulf side of Florida. And this is on the east side. Well, Florida is so narrow it only took us an hour and a half.

    Jo Ann 4:23

    So we went down to connect got up around 10 o’clock drove over there found a place to park 20 minutes later this amazing rocket took off the sky looked as bright red as my background.

    Jo Ann 4:39

    And the earth shook under our feet. We said wow and it was going and we came home. but those were the things that we could do that we looked forward to doing for all these years.

    Jo Ann 4:52

    But then in February we decided that maybe we need to start getting back into the routine of real life again. And I have worked for Kelly services for 16 years, started off just as a file clerk, took all their classes and worked my way up to management.

    Jo Ann 5:17

    And spent about 9 to 16 years working as an on-site supervisor at Baxter Health Care, which I just love the whole experience. And so anyway, when I was down here, I took a one-day assignment and got over there in the morning and ready to go, kind of going through my checklist of everything I needed to do.

    Jo Ann 5:51

    And by noon the woman who had that position had forgotten to order the sandwiches for this conference where there was about 12 or 13 people I said don’t worry about it I’ll take care of it. So I did and went down to this place that they usually use. I really kind of coerced the guy into doing all these lunches because it was last minute.

    Bill 6:24

    You coerced him to make lunches? Wow, that’s terrible.

    Jo Ann 6:27

    I got down there, and I sat rand waited for him and watched all these boxes piling up, and went up to pay him. And I asked him how much do I owe you? And he came out sounding like Russian.

    Jo Ann 6:45

    And he was from another country. And he just looked at me, like he thought I was making fun of him. I felt bad about that. So I swallowed hard. And I asked him again, it sounded just as bad.

    Jo Ann Glim Had A Hemorrhagic Stroke


    Jo Ann 7:00
    So I just handed him the credit card. And I took the boxes with me, a couple of boxes started to walk out to the car. And I felt my legs turn to jello, and I just sat there and just willed myself not to fall. And not that you can do that the stroke is always going to lead wherever you do.

    Bill 7:30

    You couldn’t convince your stroke to stop you from falling. That’s interesting.

    Jo Ann 7:36

    Anyway I got up to the car and someone else had brought all the other sandwiches and put them in there. I knew I couldn’t talk to to him so I just blew him a kiss and off I went. Well, I found that with my right hand, where I was trying to drive back, and I was working at Tropicana for the day, if you like orange juice, you know Tropicana.

    Jo Ann 8:08

    And so I was driving back over there. And I kept putting my right hand up on the steering wheel, and it kept falling off down on to the seat of the car alongside me. And no will power was getting it to do anything except that.

    Jo Ann 8:28

    So I drove a line. I’m always one, especially in a crisis situation that I tried to plan, you know, two or three things, if this doesn’t work, how about this? If this doesn’t work? And there had been a market that was absolutely huge, that had burnt down it was just ashes.

    Jo Ann 8:53

    And so I thought, well, it was on the way back and that if I do get worse, I’m just gonna pull up into that field and eventually somebody will find me. And so I didn’t need to do that, I made it back to Tropicana.

    Jo Ann 9:12

    And when I walked in there, and I knew I was really getting seriously ill. And in my mind, I knew I have had a stroke. And the only thing I’m wanting to do is to be able to tell my husband one more time that I loved him before I died because I knew I was going to die.

    Jo Ann 9:33

    My mother had passed away from a stroke when I was 14. And so I didn’t see any possibility of living through this that’s just the way strokes happen. So I called my husband and he answered the phone.

    Jo Ann 9:55

    And I tried to tell him what was going on, and there was just a long pause. And finally he said, I’m sorry, but I think you had the wrong number. And I just burst into tears going no I’ve got to tell him, I’ve got to tell him.

    Jo Ann 10:13

    And so the only thing I could get out was October, 19, which was our anniversary. And so what’s wrong with you? And all I could say was, I’m sick and I hung up. And I went to the hospital of course, I looked around, and there’s all these people at lunch time they’re walking back and forth, because they’re coming in from lunch.

    Jo Ann 10:48

    And the car was out in front, the motor was still running. And I tried to convince myself that it would be a good thing to call 911. And I decided, I don’t like doctors. And I just don’t like doctors.

    Jo Ann 11:08

    And so I chose Plan B, and got in the car and drove myself the extra maybe 10 blocks to the hospital. And when I got over there, I drove into the parking lot, and there was no place to park, the place was full.

    Jo Ann 11:29

    So I parked in a place for ambulances. And by this time, my mouth is dripping . I didn’t know if I’d be able to walk or not. And there’s this men they came up on a golf cart who was security.

    Jo Ann 11:45

    They came up on a golf cart and told me I’m sorry ma’am but you can’t park there. And I looked at him and I said, I think I’m having a stroke. And he looked at me, he said, Don’t worry about your car, I’ll keep an eye on it for you. And then he put it off. I was like it’d be nice if you would help me.

    Jo Ann 12:11

    I got myself out but by this time my shoulder’s drooping, I’m limping, my jaw is to the side, then I walked in and with my last little bit of nerve. I just stood right there in the entryway because nobody was looking up there they always used to double shut the doors.

    Jo Ann 12:16

    And so nobody’s sticking up and I just said that I think I’m having a stroke. And one of the nurses turned around, she walked in here? And all of a sudden people came running from everywhere. And I don’t remember anything after that.

    Bill 12:50

    Wow, that’s dramatic. I mean, it’s such a survival story, isn’t it? I mean, you’ve gone out of your way to survive and get help find a way to be safe, tell the people that were important to you what was going on, and then get medical help and get somebody to treat you seriously.

    Bill 13:14

    It’s a very common story from stroke survivors. It’s a very common story where people don’t take them seriously or they go to a hospital. And they get misdiagnosed as being drunk or on drugs or something else. But you finally got there. You don’t remember anything after that moment when you announced to them that you were potentially having a stroke? What’s the next thing you remember?

    Memory Challenges

    Jo Ann 13:41

    I had little flashes. I can’t say I don’t remember anything I had little flashes, like the back of the wheel on the gurney as they were rolling me down for x-rays. And just a couple of things. I remember Bill coming to the room and having a chance to talk to him before you know those things were kind of blurred but, I spent I’m guessing because I don’t recall but I think it was about two weeks in the hospital.

    Jo Ann 14:17

    And then I was sent over to a rehab place and spent about three months in there. And when I got to rehab is when, I started having bits and pieces of memories. My brain was totally (inaudible) Tell me something it would just slip in one side and slip out the other. So it took a while before I was able to recall a full day.

    Bill 14:47

    Yeah, I had a very similar story to your getting to the hospital story. It was very interesting. So I had a bleed in February of 2012. And then I had a bleed six weeks Later. And then I had one in November of 2014. So in the three, almost three years between the first bleed and the second bleed, I experienced different versions of stroke.

    Bill 15:16

    And the second version, the second bleed, meant that I didn’t know my name. When I got to hospital. I didn’t know who I was, I remember going there with my wallet to try and tell them, I need help. My wife had dropped me off. And we were talking in the car minutes earlier, with no issue.

    Bill 15:38

    And then by the time I walked the 100 yards to get to the emergency screening area, I didn’t know who I was. And then I remember waking up a little later on, and my wife was at the end of my bed, and I didn’t know who she was, I didn’t recognize her.

    Bill 15:57

    That was that time, and then the third time, I was in our central business district here in Melbourne, on some business. And I started to notice the burning sensation on my left side, and I figured that it was a stroke after doing some things that were quite strange. I got out the car or walked around the car to make sure that this thing, whatever it was, was going to go away, it didn’t.

    Bill 16:25

    So I jumped back in the car. And then I drove myself to the hospital, there was nowhere to park. So I parked in an illegal spot. I rang my wife on the mobile phone and told her on the cell phone and told her I’m on the way into hospital right now. I’m feeling unwell, etc.

    Bill 16:42

    And then I got to emergency and I went to emergency and I said, I’m having a stroke, get me into the x-ray right now or something like that. And of course, they didn’t believe me because nobody does that, people don’t just turn up and tell them what condition they have and how to deal with it.

    Bill 17:01

    So they finally worked it out and they got me through into x-ray or into CT I imagine. And when we got into the CT scan area, usually there’s one or two radiographers that are hanging around there to take the photos this time the glass room behind the scanning room was full of people, everyone came to have a look and see who this weirdo was that turned up to say, I’m having a stroke.

    Bill 17:28

    So I can really relate to that survival story that part of you that is just I don’t know what was it like for you? For me, it was like it was, I don’t know whether it was instinct, or I’m not sure how to describe it, but there was nothing going on other than something else was pushing me to overcome all of the neurological condition, the barriers, everything that was happening, the cognitive issues that I was having, somehow, I drove myself to a hospital while I was having a stroke.

    Jo Ann 18:08

    Don’t do this.

    Bill 18:12

    Just ring emergency services 911 in the US 000 in Australia, whatever it is in any other country. How do you describe that journey? Is it like I said or was it different?

    There Was No Fear

    Jo Ann 18:29

    There was no fear. I wasn’t scared. I knew there was something that needed to be done and had to be done right now. And there was nobody else to depend on except myself. So I just felt that I was thinking very logically and very clearly, obviously dragging yourself to the hospital is not a clear way to think not in that situation. And a lot of people I’m sure, do that. But you and I can attest to the fact that that’s just not the best thing to do.

    Bill 19:06

    Well, it’s really dangerous because you can have a stroke and die while you’re on the way because there’s nobody to treat you and you can have a car crash, and you can injure or kill somebody else on the way to try to get help for yourself.

    Bill 19:28

    So it is the worst thing to do. But I was so unaware of anything else, like I said is something else kicked in. And I had no concept of what’s right or wrong. I just needed to get help the best that I could.

    Bill 19:47

    And believe it or not the best way that I could wasn’t to pick up my phone and look up at the street sign which I was under and tell the ambulance that I’m under this street sign and I’m having a stroke, and I’m in my car, that did not occur to me and that ambulance being in the central business district is not far away, it’d be minutes away, if anything.

    Bill 20:11

    But I just couldn’t do it, it never occurred to me. So I was driven by another, I have to say, instinct, I don’t know what the word is, I was driven by something else to get to that particular location, which was a hospital.

    Jo Ann 20:30

    Well I think it sounds like you’re very similar to me, we’re independent people, we’ve been driven all of our lives to make decisions and to make choices and to do it wisely. And this was just another situation where, okay, we’ve got a real serious problem here. Let’s take care of it as quickly as possible.

    Bill 20:58

    Sounds like it’s a problem-solving challenge and let’s just work out a way to solve it get to help. And whatever has to happen has to happen. So you were 52?

    Jo Ann 21:14

    Yes.

    Bill 21:15

    And you think you got out of hospital about two weeks after your situation occurred? What kind of stroke was it?

    Jo Ann 21:26

    It was Hemorrhagic it was left side so was paralyzed on the right. It was in the southern exterior of my brain, which I happen to be (inaudible) the most I have had to drink in my whole life was half a (inaudible) 1921. There was a rite of passage to have a drink on your 21st birthday.

    Jo Ann 21:57

    Found I did not like the taste of or anything about it. But with this happening in the thalamus, the thalamus is like a one-size gland within your brain. And it’s on both the right side and the left side. And it’s also the area that controls your inhibitions. And so with that being damaged, I was like I had no inhibitions I had to learn manners all over again. Yeah, I did some things that are kind of funny but were not proper.

    Bill 22:46

    Are you going to share those?

    Jo Ann 22:48

    No, yes there’s one in particular I will share with you. When I had gotten to a point that I was pretty mobile and pretty close to the time of coming home. I was getting day passed here and there to come home for few hours and so our neighbor called and said why don’t we all go up to this favorite restaurant of ours for dinner.

    Jo Ann 23:16

    So we did, and while we were up there it was very crowded. I was still using a cane but I chose not to bring the cane in with me. I didn’t like to walk with it if I didn’t have to. And there was an area there where you could look at cards.

    Jo Ann 23:38

    And so there was a couple people on one side, and this huge monsterous guy he had to be 6ft 8in, I mean he was huge he looked like a Pillsbury Doughboy. Here was just kind round he had a New York accent, which I love.

    Jo Ann 23:54

    And he had this big white legs that was just protruding from me these like daisy made shorts I mean they’re really obscene. And so they called my name now my husband told me, he said, stay right here. Don’t move, he’s gone up to let them know that we needed a table for three. And then I guess he decided to go to the washroom before he came back to me.

    Jo Ann 24:26

    But in the meantime, they called our name over the PA and then I didn’t see our neighbor and I didn’t see my husband and I thought I was hungry and I got to get up there and get that cable.

    Jo Ann 24:41

    So I started towards this gentleman and he looked at me and I looked at him and smiled and he looked at the cards. So I walked a little closer to him and I went (clears throat) he kind of glanced at me looked back at the cards he didn’t move.

    Jo Ann 25:00

    And so I thought this is not right. So I backhanded him I just go whack right on the back of his bottom he jumped straight up and there was an isle right next to him and he spun around the isle. And I just walked back and past him and proud I was so happy he moves so I can get that table.

    Bill 25:32

    You smacked him on the buttocks?

    Jo Ann 25:34

    Yes. Like you do with a kid, you know when you tell your child to do something and they’re not listening to you? Hey, this message is for you. So anyway, the next day I was sharing this message with the occupational therapist, at the time I was 52. She must have been about 35.

    Jo Ann 26:06

    And I was in my mood I’m so proud of myself and she sat down. And she said, Mrs. Glim you know I love you, but we need to talk about your manners.

    Bill 26:22

    That’s hilarious.

    Jo Ann 26:24

    Whoever this man is, I’m sorry.

    Bill 26:29

    Yeah, it’s kind of very benign. Look maybe you couldn’t get away with it in 2021? I don’t know maybe because the world’s going mad who knows?

    Jo Ann 26:42

    Oh no, I’d on the ground for sure.

    Attitude Change

    Bill 26:49

    Possibly. But it’s interesting. Because I felt like I became like that as well. But not because of what the strike did just because my attitude changed. I wasn’t going to pussyfoot around things that shouldn’t be anymore.

    Bill 27:08

    It was a mindset shift. It was like, I’m just going to go down a particular path, and I’m going to address it, and I’m going to get an outcome. I’m not sure if that’s going to be a good outcome or a bad outcome. But I’m gonna go for it.

    Jo Ann 27:21

    There’s no time for drama. After you’ve had a stroke, you really, really filter through your mind and figure out what’s important in life. You know? And yeah, I know exactly what you’re saying, because I felt the same way. You know, don’t involve me in the pettiness of life, that’s not what’s important.

    Bill 27:47

    Yeah. Now, Kelly services, I’m pretty sure is a recruitment agency, wasn’t it?

    Jo Ann 27:53

    Yes. For short-term assignments.

    Bill 27:57

    Yep. And you were involved with the people that you had recruited on behalf of Kelly services, and you would go to work to the particular location they were at and check in with them and check in with your client is that the kind of role you had?

    Jo Ann 28:16

    But then after working with them for about a year, six to seven years, I had been chosen to work at Baxter Healthcare, they wanted to set up an on-site supervisor for temporary employment.

    Jo Ann 28:34

    And they had like at least 25 to 30 different agencies and all of them were vying to do their business for them. And it just got to be unwieldy for Baxter. So they invited Kelly services, to bring someone out there and put together a program and use maybe about five or six different agencies because we hired everybody from light industrial, all the way up to engineers.

    Bill 29:11

    So were you able to get back to the work after the stroke? And if so, how long did it take for you to get back to work?

    Jo Ann 29:20

    I didn’t go back to work in that way, that pretty much was over. I did a lot of volunteer work, then one of the doctors at the rehab center had asked me to work with the hospital for helping stroke survivors that were new to the experience, to help them to know what was available to give some insights to both them and their family. So I did that for about almost 9 years.

    Bill 30:07

    So, your work life had to change because of the stroke?

    Jo Ann 30:13

    It did. But it was still just as demanding. I wasn’t getting paid for anything I did. But I loved everything I did.

    Bill 30:23

    Yeah. Now I know that recently you’ve had some personal tragedy, and I know that your beloved Bill passed away. What was he like, during that time when you were at your worst, and you needed to be supported and guided? How did he go about supporting you? How did it affect him?

    Jo Ann 30:59

    He was amazing, he was just a very kind, very gentle soul. And he kind of would just watch from a distance, he would just let me just do my thing, and if I got in trouble, he kind of reel me back in.

    Jo Ann 31:30

    After 47 years, I will say he just really is an amazing man, he’s always been like that during our relationship. So both of us were kind of introverted, in different ways, but we’re both kind of introverted. But when it came to each other, we just, we could finish each other’s sentences.

    Bill 32:06

    Stroke tends to happen. While people are experiencing life, their regular part of life I raised Bill, because I know that you want to honor Bill and you want to do all the things that you set out to do. And part of what helped you get there and overcome that was his support and his love.

    Bill 32:31

    I also wanted to raise it because a lot of stroke survivors will have a massive stroke, a dramatic experience with their health, and then they’ll recover part of the way and then life will happen in between, they’ll lose a loved one. Or often, somebody else they know becomes unwell. And life doesn’t get to go on pause so you can do the stroke recovery. And then once you recovered, you could go back to life. You were 52 at the time, how old are you now?

    Jo Ann 33:08

    I’m 77.

    Intro 33:11

    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?

    Intro 33:29

    Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation? Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 33:51

    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, recovery after stroke, calm and download the guide. It’s free.

    Always Recovering – Jo Ann Glim

    Bill 34:14

    How long did you say your stroke recovery took? Or are you still also forever in recovery? Are you still chasing better health or a better outcome? What’s that like?

    Jo Ann 34:32

    I think you’re always recovering. There’s things that I know I can’t do. But like you say life gets in the way you know, the way I look at myself right now is I’m a million-dollar woman. I’ve got a pacemaker. I broke my hip and had a hip replacement. My husband told me I was a high-maintenance woman and he said why don’t you just go to store and go shopping?

    Bill 35:06

    Do something low-risk?

    Jo Ann 35:09

    Yeah exactly, but yeah, you get to a point as you age where you just don’t know if you can say that these things are happening because of the stoke, or if they’re happening just because you’re aging. Yeah, it’s all a part of the life process.

    Bill 35:35

    I was gonna say, what are some of the things that you can’t do? What are the things that you lost because of the stroke that you haven’t been able to regain?

    Jo Ann 35:46

    And I still struggle with aphasia. It’s not real prominent, like with some people, but there’s times like we could be in a middle of a conversation, and I’m like oh what’s that word? You know I’m just having a hard time coming up with it. Or my words will slur, especially if I’m tired.

    Jo Ann 36:13

    So I do practice with that, I used to be a disc jockey back in another life. And so at that level, you really, I mean, your words have to be really sharp, and you have to be able to speak very quickly. And you have to think very quickly in those two things I’m not backcast ready. I’m just me now, and when it came to a point where I was asked about doing a podcast, I really kind of hesitated because I didn’t think I could do it. And then I realized how I speak, isn’t as important, as the message I have to share with others.

    Bill 37:12

    I think how you speak is really important actually, I actually enjoy it when I get aphasia, I’m going to call them warriors, aphasia warriors on the podcast, because what it does is it encourages other people with aphasia to get on a podcast or do something that is so global, right?

    Bill 37:36

    It’s potentially going out to millions of people forever. And I think it’s important to break the barrier of I have aphasia, I can’t speak or I have aphasia, I don’t want to, or I’m embarrassed by it, or whatever.

    Bill 37:51

    Now, I don’t have a aphasia. So it’s not for me to tell you what to do by any stretch. But that’s why I encourage aphasia warriors to come on because if they don’t, and they miss this opportunity, and they miss the next opportunity. I feel like it’s a setback in their recovery.

    Bill 38:09

    And I think that that mindset of not doing stuff is not going to help them improve one bit. So I’ve had a number of people who experienced difficulty speaking on the podcast, who perhaps have a different voice than what they used to. And I even had a young kid Jack. I can’t remember which episode it was. I’ll check that up while we’re chatting, who couldn’t speak at all almost.

    Bill 38:39

    But he was 19. And as soon as I reached out to him and said to him, Jack, do you want to be on the podcast? He said yes, immediately. Now, I didn’t know that he had aphasia to that extent. And he told me via email, he said, I have aphasia. And he tried to basically let me know the situation where he was at.

    Bill 38:59

    The episode I think took us about 20 or 30 minutes where he was speaking, and I was listening and just confirming whether or not what he said, was what I heard. And we just went backwards and forwards. And I edited that episode, so we didn’t have all the quiet bits in between and all the stuff where it was a bit awkward.

    Bill 39:21

    But we’ve got to the end. And we’ve created a podcast and jacket 19 was on his first podcast after having a stroke and having serious aphasia. So I think there’s a there’s a place for me intervening when you said what you said you didn’t think you could do it, etc.

    Bill 39:48

    And this is not a typical podcast. It’s not about being the best episode. It’s not about presenting yourself in the best way having the best audio and the best background, it’s not about that.

    Bill 40:01

    This is about showing stroke, the way that it is in every way, shape or form I think, and jack was on episode 127. He’s an amazing kid. And then a few months later, his mum sent an email and said, thanks so much for having jack on the podcast, it was a real big deal that we had him on there. So that’s the way I see it anyway.

    Don’t Limit Yourself


    Jo Ann 40:28
    I think there’s two things that we miss in the opportunity. And one is like to say Don’t, don’t limit yourself, try things whether you have a hard time with it or not just try. Right after the stroke, after I’ve gotten home. I spoke with a slur, and Bill and I have gone to a picnic at his sister’s church and they did it every year, it was a big deal.

    Jo Ann 41:10

    There was this one table, where there was like, three people that were sitting at this one end. And they were saving that table for somebody it certainly wasn’t us or anybody else, and they were just drunk I mean really really drunk. And I was having a hard time standing, I was getting very tired, I knew I either sat on the chair, or sat on the ground, but I was going to sit I didn’t have a choice.

    Jo Ann 41:49

    And so I brought it up to the woman that was there and asked her if she minded if I sat there and when she heard my slur, that was just as bad as hers. She put her arm around my shoulder, she went tell the rest of your family come on over. You never know where it’s going to lead to.

    Jo Ann 42:14

    And that was the other thing that I wanted to mention. As traumatic as a stroke is and as devastating as it can be. And the work that you have to do if you want to come back, and sometimes unfortunately, some people have damages that cannot be repaired and we have to respect that they are what they’re going to be. But the thing is, is that no matter what the situation is you can always find humility.

    Bill 42:54

    Yes, I agree with you. And on episode 133, I interviewed Duncan Campling and Duncan was a locked in syndrome person. And when I think he reached out to me to be on the podcast, I can’t remember, I’m pretty sure he reached out to me. And again, I didn’t know his condition, I never know anyone’s condition really.

    Bill 43:22

    And then when Duncan decided to come on board, and do the interview, he actually couldn’t speak at all he was using a machine to speak. He pre-recorded one of those computer generated voices, where he would punch the words into a keypad. And he prepared the sentences, to questions that I sent him previously.

    Bill 43:47

    So that when I spoke about it in Episode 133, and asked him the question, he just pressed Enter, and he gave me the answer to the question that I was going to ask. So this is the thing like, I think it’s about I think, for me, what I’m trying to encourage is engagement.

    Bill 44:07

    Just get engaged in some way, shape or form, participate however you can. Nobody’s actually thinking, look at this guy, gal, weirdo, stupid person, nobody’s actually thinking that that’s just in your head. What they’re doing is looking at you in or going oh, my God, how tough is this person?

    Bill 44:31

    And how much effort are they putting in? And that part of the story that you said where you found this connection with this person. Most of us have been through something traumatic, believe it or not. And therefore we have a lot more in common with that person that we don’t know sitting next to us than we think.

    Bill 44:54

    And it takes an engagement situation you need to engage with them. You need to connect with them. You need to have some kind of a conversation with them. And you might just discover something you didn’t expect.

    Jo Ann 45:08

    It’s funny, you should mention this about a gentleman that had locked-in syndrome, we just did a show with Ikati and Henny Van Der Hoven. They lived in Finland. And she had been a model. She’s absolutely gorgeous.

    Don’t Count Me Out – Jo Ann Glim


    Jo Ann 45:35
    But she can’t move at all. There’s nothing that moves on her. And we just did a show of with her in regards to wheelchair travel, she travels all over the world. And I look at her and thinking you can do it, I can do it. And she always has a smile on her face. And the two of them are just amazing people.

    Bill 46:01

    Now, is that your podcast?

    Jo Ann 46:04

    Yes.

    Bill 46:05

    And what is it called?

    Jo Ann 46:07

    It’s called Don’t Count Me Out.

    Bill 46:09

    Don’t count me out. And it’s I know it’s available on YouTube. Is it available on Apple podcasts and all those places as well? Or is it just in a couple of spaces?

    Jo Ann 46:19

    It’s on there and it’s on Resilience Talk Network. It’s also on my website at joannglim.com and I am going to see if they’ll set me on Apple sometime this weekend.

    Bill 46:39

    Fantastic. So anyhow, I will make sure that links that we do have wherever it is available at the moment, I’ll make sure that we link our podcast show notes to that. So anyone who comes along who is interested can find it there. Now you also wrote a book.

    Jo Ann 46:57

    I did, yes.

    Trapped Within Book


    Bill 46:58
    Now how long ago did you write that book? And tell me what it’s called?

    Jo Ann 47:06

    It’s called Trapped within. And I wrote it probably four months after I had a stroke. Because I really felt like when I read about you know there wasn’t anything that we should find to help get through, once you were past the hospital and the rehab and they deemed that you were miraculously cured, you’re on your way and that was it.

    Jo Ann 47:47

    And so for you to find things to do that would help you. It was difficult to do. And the other thing that I wanted people to realize is that there’s certain stages that you go through in the process. You know, I mean, we can sit here and talk and kind of laugh about some of the things that happened to us.

    Jo Ann 48:15

    But in the beginning, I know for myself, I have the doctors and stuff that were trying to prepare me for life of living in a wheelchair. You know, you may never walk again, you may never do this. But you’re still you. I heard that so often, in fact I wrote a whole chapter about that because don’t tell me that I’m still me. You know I can’t garden. So don’t tell me I’m still me.

    Bill 48:54

    No we’re good. I thought I lost you there for a moment. And you’re back, so go again. You can’t garden?

    Jo Ann 49:03

    Yeah, I couldn’t garden, I couldn’t. I couldn’t do anything that I did before I only had one hand that work. I couldn’t walk, my eyesight was impaired. You know so don’t tell me I’m still me. You know, I used to ride horses. I was learning how to jump. There’s a lot of things that I did. I was very physical. And I couldn’t do them anymore.

    Bill 49:30

    Yeah, your identity gets challenged dramatically. And if your identity is wrapped up, which for most of us, it’s wrapped up on the things we do daily. If we can’t do them again, there is a real crisis there’s like Okay, so what do I do? What am I, I’m not doing anything, I’m not going anywhere, I’m not myself and you need to learn how to get beyond those feelings at the beginning and rediscover yourself or recreate yourself, how would you put it?

    Jo Ann 50:04

    I would say recreate the reason that seems to be more appropriate in my mind, is because we create ourselves all the time. Ever since we were very, very young, we’re always learning new things, we’re always trying new things. And for some reason, some stroke survivors get stuck on wanting to get back to who they were and why they were.

    Jo Ann 50:36

    And they wouldn’t in my estimation, be there now, 10 years later, anyway, they would’ve moved on, they would have found new experiences and new things to do. So I think if we can kind of open that door, and let ourselves walk through it, or wheel through it if we have to but go through it somehow, we might find that we may not be the same, but we may be better.

    Bill 51:10

    That’s profound, what you just said is profound that if we go back 10 years before the stroke, we had things we did, which would no longer do, which were taken away from us, either by choice or by circumstances, or by other situations. And yet, we didn’t stay stuck in the moment of, Oh, I want to go back to those days where I was, I’m not sure what it was, you know, knitting or whatever it was.

    Bill 51:37

    And now I can’t do it. So my life is over and everything is terrible. I love what you said that, that’s a really profound statement. And I’ve never thought about using that in that way and explaining it in that way. So you rediscovered yourself, you found that there was things that you couldn’t do? And then how did the evolution occur? I imagine it happened sometime after you went home from rehab, etc. How did that evolution occur?

    Jo Ann 52:12

    Well, one of the things because my walking was very bad. But by the time I got out of rehab, I was back to walking supposedly with a cane I used to use my husband’s arm, instead of a cane, but and then I would always leave the cane in the backseat of the car, I just happen to forget it.

    Jo Ann 52:38

    But I didn’t walk real steady. And I had been a line dancer before I had my stroke. And so my sister and I, because you know you can hang on to somebody’s arm, or you just have certain steps to do you learn those. We ended up going line dancing once a week. At first I started off just by sitting in the chair, and letting my legs follow the steps until I got the steps down.

    Jo Ann 53:15

    And then I would hold on to my sister and do it. And so the teacher talked to us and found out what my story was, she would come over and grab my arm and take me up in front and had me go through it with her. And I felt so comfortably confident with her. It just started to roll and I did it for years.

    Importance of Exercise

    Bill 53:45

    Yeah, exercise is really good for helping to repair and heal the brain. It also supports making new neurons that supports your fitness. I mean, exercise is really important. any way shape or form that you can get exercise is important. And that’s awesome that you did it at the beginning was just in the chair, and you’re just wiggling your legs around until you got the steps, right.

    Bill 54:05

    That’s exercise. That’s really all it takes. It’s amazing. That that you did that. Now, the book, trapped within a true story about survival, recovery, love and hope. It’s an awesome cover. I love the cover. There’s a little paragraph on the front page says and I’ll have an image of it as well for anyone who wants to have a look at it in the show notes.

    Bill 54:30

    That there’s some words there that say Trapped Within is a powerful and intimate story about the endurance of the human spirit during a time of life-threatening crisis by Richard Paul Evans, number-one New York Times bestselling author.

    Jo Ann 54:47

    Yes.

    Bill 54:50

    Who’s Richard Paul Evans?

    Jo Ann 54:52

    Richard Paul Evans is a very dear friend of mine. And he just went through some surgery. So anyone who knows who he is, him well right know but Richard, if you ask him to describe the types of books he writes, he says I write books that make women cry, he writes love stories, they’re not sexual, they’re stories about relationships.

    Jo Ann 55:28

    Something that someone is working on to make their life better. Maybe it’s a broken relationship between a father child. And he just writes beautiful stories. They’re sensitive, they’re loving.

    Jo Ann 55:49

    And there’s something that both men and women enjoy. He wrote a series of books called Michael Day. That are for young boys. And I’ve not read them yet but I want to and it’s about character that’s a teenager that’s flawed he has Tourette syndrome. But he does some amazing things. And yeah, Richard is a very special man.

    Bill 56:24

    Yeah. And what’s your book about? I know, it’s a true story about survival, recovery, love and hope. But what if I asked you what your book is about? Why did you write it? What was it about? I know you wrote it because there wasn’t much going on at the time. But what’s it about? What message Are you trying to get across?

    Jo Ann 56:44

    What I wanted to do is to help other stroke survivors no matter where they were, in their recovery, to look and see that some of the steps that they may be going to that others have been there as well. And so just keep going, just go through the process, I found after the last edit that I did on the book, and read through the whole thing, which I did about 70 times, but that’s another story I found that it actually is a grieving process.

    Jo Ann 57:33

    It’s very close to Elisabeth Kubler-Ross, and what she has written about grieving, and all of the steps that you have to go through. And we may go through more than once. And so it helps me to be able to say goodbye to the me that I had been before, and I was able to do it with a great deal of love and fondness for who I’ve been I worked on hard to become the person I was.

    Jo Ann 58:11

    And so you have to go through that. “How dare you take me away”? And I think that was the hardest option for me to face was that my body actually betrayed me, you know you rely on your body to take care of you. And it didn’t, that was the hardest one for me to forgive.

    Bill 58:39

    We take it for granted that our bodies can do that internally. But it doesn’t because it’s not meant to. And then we’ve got to come to terms with it. When you have that awareness. That’s the real hard part. Some of us are oblivious to life until life happens.

    Bill 58:58

    And then it’s really tough to come to terms with it. And I get it. And it’s a journey that we’re all going to go on no matter who you are a condition or something a life event is going to make life happen to you too. And I think it’s meant to that’s the thing. That’s the part that I got out of my experiences. Life’s meant to be happening to us. It’s not meant to be all roses and just non-events of achieving greatness and amazing stuff and doing all the things that you love and always having calmness and that’s not life.

    Bill 59:38

    That’s, I think that’s the complete opposite of life that’s not being alive at all. At least now I feel like I know what it’s like to nearly not be alive. And I prefer whatever I’m dealing with, even though it’s not pleasant, because it’s not always not pleasant.

    Bill 1:00:00

    The part that’s not always not pleasant is the part that I create that is really an important message is that what’s important is that we look for things, to balance out the terrible parts in our life, that and create those good moments and good memories, because we’re responsible for those, they’re not just going to happen to you.

    Bill 1:00:23

    It’s very rare that somebody is going to turn up and give you the amazing experience that you want exactly the way that you want it, you have to create that. That’s our job. Our job is to create balance between the things that happened to us that we can control, like life and flip it so that the balances in the favor of the good things so that when terrible things happen, we can deal with them quite easily. Does that resonate?

    Jo Ann 1:00:57

    Absolutely. Yeah. And I also think, I don’t think people gain compassion without having challenges. How would you ever know what compassion is? You wouldn’t recognize it if it past you on the street, if you haven’t experienced something devastating in your own life?

    Bill 1:01:24

    Jo Anne, I really enjoyed our chat. Thank you so much for being on the podcast. I look forward to keeping in touch with you. And following your ongoing journey. I am truly sorry that you lost your beloved Bill recently. And I wish you well, from here on and I hope that you’ll remember him fondly, like I’m sure you do.

    Jo Ann 1:01:37

    I feel his pressence around me all the time.

    Bill 1:02:01

    Thanks so much.

    Jo Ann 1:02:03

    Thank you for having me. I’ve enjoyed this so much. And one of these days, I’m gonna have you on my podcast too.

    Bill 1:02:13

    Anytime.

    Bill 1:02:16

    Thanks so much for joining me on today’s recovery off the stroke podcast. Do you ever wish there was just one place that you could go to for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:02:36

    This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook, and as soon as you leave hospital, you no longer have medical professionals on tap.

    Bill 1:02:52

    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you’re not alone and there is a better way to navigate your recovery and build a fulfilling life that you love.

    Bill 1:03:07

    I’ve created an inclusive, supportive and accessible membership community called recovery after stroke. It’s all the ones support and resource program is designed to help you take your health into your own hands. This is your guidebook through every step in your journey, from reducing fatigue to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community. Head to recoveryafterstroke.com See you next time.

    Intro 1:03:35

    Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:03:52

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

    Intro 1:04:15

    The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.

    Intro 1:04:37

    If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:04:54

    Medical information changes constantly while we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Life-Long Stroke Recovery – Jo Ann Glim appeared first on Recovery After Stroke.

    1 hr 8 min
  • Emotional Changes After Stroke – Sam Hanes

    Sam Hanes Experienced a bleed in the brain due to an AVM, he is also dealing with 4 aneurysms, has had a craniotomy and gamma knife treatment and 5 years since this saga started he is now raising awareness about stroke

    Socials:

    www.instagram.com/brokenbrainsurvivors/

    Highlights:

    02:25 Introduction

    05:51 The Begining
    14:39 Back To Work After A Stroke
    18:24 Emotional Changes After Stroke
    23:24 Memory Challenges
    34:27 Pseudobulbar Affect
    42:25 Possible Effects of Gamma Knife
    49:47 Losing A Loved One
    58:07 Sensory Overstimulation
    1:03:55 Stroke Recovery Timeline
    1:06:40 Stroke Advocacy
    1:13:00 Breaking Barriers

    Transcription:

    Sam 0:00

    I used to be able to block all this from seeing so much death in my career, people would say I was cold because like if I went to a funeral, I wouldn’t shed a tear. Now if I think of something, I get a little emotional.

    Sam 0:19

    And eight months after my stroke and everything. I would always call my dad whenever I would go to the doctor’s office, and he would call me vice-versa. He just lived right down the street from me.

    Sam 0:38

    So we were always working on cars or stuff like that. We had old classic cars and everything and I was in the shower about to go to my doctor’s appointment that morning.

    Sam 0:48

    My phone rang and I opened the curtain seeing it was him. I said, I’ll call him back in the second and something said pick it up, I picked it up and I heard, somebody say my dad was on the floor.

    Intro 1:00

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:13

    Hello, and welcome to recovery after stroke, a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future. I’m your host three times a stroke survivor Bill Gasiamis.

    Bill 1:29

    After my life was turned upside down and I went from being an active father to being stuck in hospital, I knew if I wanted to get back to the life I loved before the recovery was up to me.

    Bill 1:40

    After years of researching and discovering I’ll learn how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:56

    If you enjoy this episode and want more resources, accessible training, and hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers.

    Bill 2:09

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence, head to recoveryafterstroke.com to find out more after this podcast. But for now let’s dive right into today’s episode.

    Introduction


    Bill 2:24
    This is Episode 154 and my guest today is medical professional Sam Hanes. Sam has spent 20 years plus as a medical professional helping in hospitals. He has five years ago experienced a hemorrhagic stroke from an AVM, he has had four aneurysms, and part of his treatment required a craniotomy and gamma knife was also used to manage the inoperable AVM.

    Bill 2:52

    Sam Hanes, welcome to the podcast.

    Sam 2:55

    Hey, how you doing, Bill?

    Bill 2:57

    I’m doing really well. Thanks so much for reaching out. I’m glad to have you on here. You know, we don’t get a lot of men on the podcast. And I’m not sure why that is. Men don’t seem to want to talk about this stuff too much.

    Sam 3:12

    Well, I’ve kind of found out 20 years of working in the medical field, I always tell patients where our work, you know, men wait five days before coming in when they knew they should have came in the first day.

    Sam 3:25

    And women will go for help. So that’s probably part of the reasoning behind. You don’t want to show weakness and stuff like that. But with the brain injury, it don’t matter how big you are, who you are. It’s debilitating in so many levels, you know. So that’s probably the reason why you don’t have that many men come on here.

    Bill 3:49

    It’s tough. Tell me a little bit about the work that you do.

    Sam 3:51

    So I’ve been a respiratory therapist for 20 years, I’ve worked in the ICUs, I actually worked the last pandemic, or I don’t think was classified as a pandemic, it was the swine flu.

    Sam 4:06

    I was working at Vanderbilt in 2009. And so I’ve seen a lot of deaths from that, you know, and so this virus is kind of hit in the same way dealing with the lungs, but it’s just a different beast in this virus, you know.

    Sam 4:23

    And I know we’re in the whole world in the middle of this political divide, and then you throw a virus in there with a pandemic and then make people go broke. And so it is just, there’s so many levels to this virus.

    Sam 4:43

    And because the hospital is on lockdown. The people are not actually seeing people die, you know. And so, as a respiratory therapist, unfortunately, my job I mean, we save many lives in my career. I’ve seen so many miraculous recoveries.

    Sam 5:01

    But unfortunately, this one right here is just this year, I’ll say 2020 was the most deaths I’ve seen. From a respiratory point of view. I mean, unfortunately, the end of life, people don’t think about, you know, the doctor writes the thing, take the patient off the vent, because that’s their wishes.

    Sam 5:24

    But there has to be a person go take that person off the vent, and watch them take their last breath. And that actually comes back into my first few months of recovering Oh, like I told you in the email. Are you ready to peel back the onion? Because there are so many levels?

    Bill 5:45

    Yeah, tell me about what happened to you first, let’s do that. And yeah, we’ll dive into it. That’s what it’s about.

    The Begining Of Emotional Challenges After Stroke


    Sam 5:51
    So I was in the gym, August the 14th 2015. Like I said, I’ve worked respiratory for 20 years now. But at that time was about 15. And I had a routine, my routine actually saved my life. Because I had this AVM that I did not know about, it had gave me signs and symptoms before this, but nobody picked up on them.

    Sam 6:17

    And so they just said it was you’re just probably lifting heavy weight, you got some nerve damage under that right arm because it didn’t affect nothing, on my right side except my arm. And it would only affect it like three times a year for about a minute.

    Sam 6:33

    And so unfortunately, our great medical system here in the United States, an MRI of your brain, or CT, if you ever looked at your bill, other than the insurance, picking up a big portion of it, if you have insurance, it’s $5,000. And the reason I know that number is because I’ve had so many scans after my Gamma Knife every three months, every six months, and I do it every year now.

    Sam 7:02

    And so I see those bills. So the average person is not going to spend that much and the average ER doctor has somebody over them saying, Do not order anything that is not need. So if you don’t go in there with a massive headache, you’re throwing up, they’re not going to scan you if they would’ve scanned me.

    Sam 7:23

    I would have been a controlled surgery, another life flighted surgery, you know, and all the other ordeals I had to go through. But fortunately, I had that routine. Like I said, I would get up, I will always work night shift. So I would go get up at 2:30 go to the gym workout for an hour, hour and a half go home to shower and go to work.

    Sam 7:44

    I’d done that religiously whatever city I worked in because I was a traveling respiratory therapist. So I got to work in a lot of major medical centers, Vanderbilt University, Cincinnati, Georgetown University that kind of traveled around, I’d done that actual routine, every city I was in.

    Sam 8:03

    And so this particular day, I was two days into my seven days in a row that I would work. I work seven on seven off at the time. And I remember I went to just warm up on some overhead presses. And next thing I know I dropped down and I started projectile vomiting.

    Sam 8:26

    Now I don’t I don’t really remember this I got a little bit I say I got 15 seconds a memory several months after my injury because I actually lost two weeks before my injury and four weeks after my injury.

    Sam 8:40

    I’m pretty much memory lost. And so there’s a lot of key factors at play in that it is kind of comical some of it but like I said, ruptured the little bit of memory I got back I was hanging on, luckily this gym was a private gym and my one of my good friends owned the gym.

    Sam 9:04

    And so my thought was when I’m throwing up, I gotta get the hell off here and clean this up or Joey’s gonna be pissed. And then I realized I’m holding on now, I had earphones in and there was one this day there was one person across from me, but he was doing hack squats and he had his back towards me.

    Sam 9:25

    They say that’s the guy that actually started the chain reaction to get me help. He came over I kind of vaguely remember him asking me Do you need help? And I don’t remember anything else but I know they said he took me to the garbage can I threw up there and then he took me in the bathroom and laid me down.

    Sam 9:44

    And ran next door to get the process of 911 called and get some help to me go get the owner that has other business. And in that short little time I actually called my mother and I call my girlfriend. Now I accidentally FaceTime them only reason I know I’d done this because there’s a blurred kind of eerie picture of me.

    Sam 10:08

    I accidentally took a picture of myself. And there was a light behind me. So my face is kind of blurred. But it gave me the exact time and date that I basically passed away because I actually called them and because I butt-dialed them every day in the gym.

    Sam 10:27

    I didn’t answer them. So they hung up on me. And so, ofcourse, probably about 15 minutes later, they got an emergency call saying he’s in the back of an ambulance going to the hospital.

    Sam 10:40

    And so they took me to the local hospital. It was like, the perfect storm to hospitals in the major cities around me were tied up the neurosurgeons in New Orleans and in Alabama. And so this ER doc that I was in this local hospital, said we got to get him north, this major medical center in Jackson, Mississippi.

    Sam 11:04

    So they airlifted me up there. But I don’t have no memory of that place. I went back and talk to him. But that kind of started a chain reaction of, well, he’s got this AVM for aneurysms, and we don’t think he’s going to survive.

    Bill 11:25

    How old were you at the time when they discovered it?

    Sam 11:28

    I was 44.

    Bill 11:30

    Yeah, so the four aneurisms were separately located to the AVM?

    Sam 11:39

    They were kind of in the cluster. I know they went in and so this is kind of where I got paralyzed on my right side temporarily. When they airlifted me up there, the only reason I know this, and I went back.

    Sam 11:51

    And so when I was able to read again, I read every one of my medical notes, I read the surgery notes but I didn’t know a word. I looked it up, you know, so. But I mean, I’ve been in the medical field for now 20 years at that time 15.

    Sam 12:12

    That was my blessing in disguise, is that I understood what the doctors were saying. When my family didn’t, you know, my family was just like any other family, oh, my God, he’s got this mass, you know, or he’s got these vessels what he’s gonna die?

    Sam 12:29

    They you know, I mean, I see it all the time and the hospitals. And the anxiety from the families causes a lot of turmoil and the critical first parts of a saving a life, you know. And so that I know, in my notes, it said that they went and glued me.

    Sam 12:50

    So they stopped my bleed. They tried to do me with the two-glue, Black Onyx, and the second glue and they done. My mother said that I came out. And I couldn’t move my right arm.

    Sam 13:05

    And unfortunately, I’ve talked to several neurosurgeons they said, believe it or not, that happens more often than you would think. Because you got glue, and if they don’t backfill those vessels and clear the catheter, before they come out, now you got a glue clot, a clot to clot, they don’t matter for blood cholesterol or glue.

    Sam 13:28

    So I was a hemorrhagic stroke, and I’m still weak in my right arm. I seem to go to the gym they’re like, Oh, you got muscles. I said, Yeah, I had a stroke. And I’m weak in my right. You know, I just have that lingering effect and I’m right handed. So I’ve had to learn to do things with my left more than I do with my right.

    Bill 13:51

    You know, the aneurisms, they’ve been clipped? Did they go in through the skull? Or did it all get done through your groin?

    Sam 14:00

    So I’ve actually got a scar from my ear. All the way to my forehead. And you can kind of see that screw right there. You see that bulge in my forehead? I acutally got 18 little screws.

    Bill 14:17

    Put your head a bit lower.

    Sam 14:18

    I’m sorry. There’s my screw. The scar goes here. Unfortunately, you know, I told my surgeon I said, you know, you could have grind the screw off or something. You know, I’m bald.

    Bill 14:38

    Do you make people touch it?

    Back To Work After A Stroke

    Sam 14:39

    Yes actually taken care of patients. So I was fortunate enough to go back to work eight months later, and actually use it as a tool. You know, I’ve had so many patients say you don’t know what pain is, oh, let me just turn a little bit. And when I show them this, then they’re like oh, man, I don’t have it so bad or, you know, it kind of just breaks the ice.

    Bill 15:05

    Yeah, nothing better than a medical professional completely and totally understanding you not that we want them to, we would rather they were oblivious to our issues. But I do the same thing when people talk to me about stuff and you know, I want to mess with them a little bit.

    Bill 15:23

    Usually my hair is a lot shorter. It’s usually a number one so you can see my scar. I do that I say to them, give me your hand, to touch, touch this, feel my screw. And that messes with them.

    Sam 15:36

    If I shake my head, I can feel it, you know, I can feel my forehead kind of rub cross that screw up. You know, I always wear hats. Most people didn’t know I was bald. And that’s what I told the surgeon I was like, you could have at least but screw a little bit lower. Because I can’t wear a hat. Except if I tilt it. You know? That’s actually tender, you know? I mean, it’s a piece of metal under there. I’ve learned to embrace it.

    Bill 16:04

    Are you constantly afraid that you’re going to get hit on the head? This is my biggest fear. Now my biggest fear is that I’m going to have an impact on the side of my skull where the plate is and where the screws are. If somebody comes near my head, they get the whole, you know, don’t touch my head get away from my head.

    Sam 16:26

    I’m not scared. I don’t know. I mean, I just got a this is I used to see it as a curse, because like I said, mines and layers. So at first, when I was brain injured. I had the medical experience. I couldn’t read the written word. I know you just had somebody on there talking about the parietal lobe.

    Sam 16:49

    So my AVM is actually in the middle of my primary motor cortex. It branches from my parietal to my frontal lobe. So I had lots of side effects. You know, so I remember the surgeons, they saved my life, they stabilize me, and they said, You know what, we’re gonna send him to a rehab.

    Sam 17:09

    So I stayed up there for 12 days, and then they sent me to a rehab for 15 days. And due to insurance purposes, we figured we would save my rehab stay for after my craniotomy.

    Sam 17:22

    But that’s where I kind of have some memories sitting at that rehab. I knew everything the nurses were saying, but I couldn’t read the written word. So my parietal lobe had me I can kind of picture them now. Words like cat, dog hat, stuff like that, and I couldn’t read them.

    Sam 17:44

    And it was so frustrating. And then I had the I call it a skip in the record. I talk like this and the frustration was, I knew everything I wanted to say, but I couldn’t get my brain to tell my mouth to say those words.

    Sam 18:03

    They just would not come out. And so I remember sitting there with a speech therapist, and they had a one in training. And I told her, I said, I know all the medical field. I have been in this. I know what’s in front of me. I just can’t read it. And it would make me so frustrated. You know?

    Emotional Changes After Stroke

    Bill 18:24

    Are you frustrated that you can’t read it? Are you frustrated because you you’re a medical professional, and therefore you should know better or be doing better? What’s going on in your brain? Because I wasn’t frustrated? I had no idea what the hell was going on. And I just went with it you know? So what’s going on with your brain?

    Intro 18:44

    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, or doctors will explain things but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 19:09

    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

    Intro 19:28

    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, recovery after stroke, calm and download the guide, It’s free.

    Sam 19:49

    So all these people in medical uniforms. I’ve been around medical uniforms, you know for 15 years at the time. And so these are like co workers to me even though I didn’t work at this particular rehab, this was the frustration, I’ll do everything the doctors were saying, and, but I couldn’t speak real well.

    Sam 20:10

    And, you know, here I am sitting in a wheelchair, so I can’t walk at this time. So I always say it’s like, I had two computers. When one was on, I knew everything, medical heard everything, I know what the doctor is saying.

    Sam 20:30

    And then I was to this other side, at other times, that I can’t read plain words, I can’t get up and walk. And see, I didn’t know that they’d glued me and kind of paralyzed me on my right side. So I remember them pushing me up to a table, putting breakfast in front of me, and I can’t reach for the spoon.

    Sam 20:51

    And so I tell patients, and I tell family members that I’m around the hospital all the time. I said, Go brush your teeth with your non-dominant hand, go feed yourself with your non-dominant hand, let’s see if you can put that spoon straight to your mouth.

    Sam 21:05

    See now I can do it perfect. But back then I remember I was chasing the spoon to try to get a bite of grits or whatever I was eating. And I just couldn’t imagine why this was, like I said, I was kind of online sometimes. And I was offline the other time. And it was a bar to me.

    Sam 21:28

    And I mean, I remember some of it. I can remember like, and my family can’t understand this. Most people can’t understand that. Unfortunately, my dad has passed away now but at that time, he was on oxygen COPD or stuff like that. I remember being that rehab, and a notary public coming in sitting in the chair in front of me, I’m sitting in the wheelchair, my dad came down the hall, he’s huffing and puffing sitting in the chair next to me.

    Sam 21:57

    But there’s three other people in the room with me, my mother, my stepmom, and my girlfriend, because they were on my right side. I had no clue those people were even there. So I have memories of my father. And this guy that was doing the notary public. I have no memory of my mother being there. And believe it or not, people get their feelings hurt.

    Bill 22:23

    I know that they make it about them.

    Sam 22:25

    They get their feelings hurt from a stroke survivor, because like I can remember a few people coming to see me. And those people are like, Oh, he remembers me. Unfortunately, the girlfriend I was with at the time used to get mad at me, because she said I was right there in the room with you. And I’m like, she thought I was making it up saying I don’t remember her being there.

    Bill 22:48

    This is more about them than it does you and that’s an interesting situation. It really frustrates me when I hear about people visiting stroke survivors making it about them, you know, you hear about, oh you had a stroke or yeah you’ll be right, yeah, you know what happened to me.

    Bill 23:04

    You know, I had my little pinky got stuck in a jar or some stupid, silly thing. And they try and minimize your experience. And they also tried to somehow relate to you, and they just go about it in a terrible way. And they have no idea how to really do it and what an impact it makes.

    Memory Challenges


    Bill 23:24
    I was forgetting people all the time as well. I was forgetting who came to visit me and I did the opposite. I was complaining to my wife that his sister didn’t come to visit me. Why hasn’t my sister in law come to visit me? And she said, but she did. She was one of the first people that were there.

    Bill 23:42

    But that was one of the most acute phases of my of my recovery. After the second time my AVM bled. I mean, I had no idea that people came from interstate to come and visit me. And a year or so later, they were telling me about the visit that they made.

    Bill 24:01

    And I’m like, you came to visit me you traveled 1000 kilometres and you came to visit me? I don’t remember a thing. So if they’re going to get their feelings hurt. There’s something wrong with them.

    Sam 24:19

    Well, that’s like when I initially got flown airlifted to that hospital. I had a co worker that came he’s not from the coast down here. He was from another state and he didn’t have nothing to do that weekend. So he drove up there to see me and he said my whole goal was to go see if you were brain damaged, and if you forgot your profession.

    Sam 24:42

    So he said he came up there and gave me some bits sentence and a scenario of a patient and gave me a blood gas and I answered how to correct that blood gas. The blood work through the ventilator you know, and so he came back down here told my other co-worker he remembers all of his respiratory and that’s what is the crazy part.

    Sam 25:06

    So I remember him, but I don’t remember any of my family being next to me or my girlfriend at the time. I had like five best friends that came and took a picture next to me in the bed. I remember the only friend that came to see me. I have a friend that’s paralyzed from the waist down. I remember him sitting at the end of my bed in his wheelchair.

    Sam 25:30

    I had no clue the other ones were there. And now they said I had a talk with him and everything. But that’s what people don’t get with a hemorrhagic stroke. You know, we talk, you know, and that that’s my biggest advocacy thing, when I go to speak to people, is a majority.

    Sam 25:49

    So they teach you about extreme IQ strokes, facial droop, paralysis, hate speak. My family said I was actually time traveling back to places I worked. They said they actually my younger brother would ask, each day I was in Jackson for the first 12 days. Where are you at?

    Sam 26:11

    And they said, I would say clear as a bell. Where else I’m in Nashville with a new, okay, he’s in 2009 to 2010. I was living with a bandmate. In three doors down. I was up there working at Vanderbilt. And so they gave me my phone. And I was actually texting that bandmate like I was still living with him. But the very next day, he would ask me where I was at.

    Sam 26:36

    And I was in Cincinnati. Well, they knew Okay, I worked in Cincinnati in 2007, and the first part of 2009. And so somehow, I was starting over Facebook, in the ICU or my phone. And I went back months later and looked on my Facebook that I had at the time. And I wrote downtown Cincinnati trying to break in hospitals to work as a therapist.

    Sam 27:01

    And a lot of people came in and asked questions underneath me and said, I thought you are in the ICU yourself. Of course, I never answered them. But I was I say this part of my brain was damaged. This part was functioning and I was just doing stuff. But they said I would be laying in bed and at the hospital, they would call Code Blue.

    Sam 27:22

    Well, I’m a respiratory therapist, I go to every code blue in the hospital. They said I would raise my hands. I’ll be there in a minute. So I was and I tell people I had bells and whistles around me I was used to the monitors. I was used to the pulse ox. I used to blood pressure cuffs, how we used to all these bells and whistles. So yeah, part of my brain was injured. But there was a part that had clarity of the place I was in or the environment I was in. So I would react to the environment.

    Bill 27:56

    I had a really good friend of mine. He also lives in Melbourne, Australia where I live. And in the early 1990s we had a underworld gang war and there was a brand 30 murders over a period of a few years related or related to this particular gang war or whatever it was.

    Bill 28:23

    And it was in the news and then the front of the newspapers all day, every day. That’s all we ever heard. And then my friend had a stroke. He had a aneurysm that person the back of his head, I think it was the the vertebral artery I’m not sure which one of his burst, but one of them burst or one of his carotid arteries, I’m not sure.

    Bill 28:48

    And when he was coming around and started to talk to people, he was telling them stories of how he was involved with the leader of the gang that was responsible for a lot of these deaths and how he was dealing drugs, and he and how he was best mates with him.

    Bill 29:09

    And it was an amazing man and all this kind of stuff. And he was telling the story. And people didn’t know whether he was making it up, or really truly believing it. But he was not making it up. He was truly believing that it was the most bizarre story that he could come up with.

    Bill 29:28

    And he was telling it like, it was his life. And this is a person has never done a cricket thing in his entire life, you know? And it was so strange to hear him talk about that and his family were just forever bewildered by hearing their stories and they were trying to gently tell him that that’s not the case you’re in hospital. You had brain surgery, your head’s half mangled, and it’s got nothing to do with what’s happening in the drug war so bizarre.

    Sam 29:59

    But to him it was real.

    Bill 30:01

    Real, properly real. Yeah, he wasn’t making it up.

    Sam 30:06

    That’s like me so there was a, so I had a rupture. And then they let me rest for a month and a week. So I remember they sent me to that rehab stayed there, like set for about 15 days. Which that was so bizarre, because, like, I don’t remember why I got up out of the bed.

    Sam 30:30

    If it was to get my phone on the bedside table or what, but I ended up falling fallen in about hitting my head. I didn’t know I couldn’t walk, and it was nighttime. And so when the nurse came in, I told him immediately he said, what are you doing? I said, I don’t know but you better not trust me, you better put me in that bed and lock me down, or I’ll get you in trouble.

    Sam 30:55

    By the way, you’re gonna have to fill out a lot of paperwork for this, because every time a patient falls, the nurses have to fill it. So there’s the part, okay, there’s the medical experience coming in. But then I don’t even know why I got up out of the bed. I didn’t know I couldn’t walk, you know.

    Sam 31:11

    But when he put me back in that bed, again, I was back. I call it time travel now because I was actually when I live with that bandmate I was actually texting him while I was in this hospital, just like I was living with him back in 2000 to 2010. And so I would write him long paragraphs, and I remembered I accidently deleted that thing.

    Sam 31:37

    And that upset me. And so then I started, the nurse was sitting there, it was a male nurse, he was sitting at the door watching me. And I was telling him, all the trips I ever went out. So three or down started, like back here in 2000, our 1999 or something like that.

    Sam 31:55

    So every year as a little time off, I would go out with my best friend at the time and go on tour with him for like 10 or 12 days, and then come back to my normal job. I was telling him stories that were supposed to stay on the road, you know. And I remember telling him after he said I would talk and then I would fall asleep. And then I would wake up and pick right back up where I started the store left off.

    Sam 32:23

    And I told him that morning I said whatever I told you, you should have wrote it down because those stories have never been told anybody you know, he said, Man, you would pass out. And you would, it’s almost like you pick right back up on the next word like you were reading the sentence, you know.

    Sam 32:39

    And so I remember leaving there as us. That’s where I kind of come up with this. The first part of what I call the three phases, three phases of stroke recovery. And so I was in that first phase where I repeated myself every five minutes. I had that five minute repeat all the time, and then I would realize I’m repeating myself, but I couldn’t stop it, you know.

    Sam 33:07

    And so I got more clarity when they went up there and cracked my skull. When they took me back up here and they cracked my skull. Then I recognized everybody around me, even my son. And they told me that’s when they after the surgery. I say that I told him that my surgeon I said he talked to me a lot because I was in the medical field and his nurses even said he talks to you well, a lot more than any other patient. He said. He said, he said It must be because you understand what he’s saying.

    Sam 33:42

    Well, when he woke me up from the craniotomy, he said, I got some good news and bad news. And I said, what you cracked my store gave me the scar. And then you got some bad news because he told me I said I was able to get one of your aneurisms. But I couldn’t get to the other three.

    Sam 34:01

    And we’re going to send you in six weeks to get Gamma Knife 90 minutes a gamma knife. We’re going to try that option. He said, If I would have took your AVM out, you would have lost your walk your talk and a combination of both. So we’re going to roll the dice with the radiation now and so six weeks later, I had to go get screwed into Halo, which Hello, I had a screw I had just been freshly cracked.

    Pseudobulbar Affect

    Sam 34:27

    So they actually had to shift the halo over and put it a little bit off. Oh man, I was just I was lucky that the three doctors could not agree to go to 90 minutes. They but I remember they stopped at 55 minutes. And at this time I was I didn’t know I was having pseudobulbar affect. I don’t know. Do you know what that is?

    Bill 34:52

    No. What is it?

    Sam 34:54

    Like I had the part where it was. I just cried. I just cried if the wind blew wrong, I cried.

    Bill 35:04

    I know what that is. I didn’t know what it was called. But I know what that is.

    Sam 35:08

    Well, luckily, I actually was, I was sitting on my after my craniotomy and it might have been before, but yeah, it was before my Gamma Knife. I remember sitting on my couch, and I had the flat effect. So, you know, I didn’t smile, the flat effect it, you can have it for long periods of time. I had it maybe for a couple months.

    Sam 35:32

    So my family would come over and thought I was depressed because I didn’t smile. I was flat. And I recognize patients that I take care of that have flat effect. I’m at because these patients before they had their craniotomy, they smiled. And also now they’re a bit straight, no facial expression.

    Sam 35:53

    You could go joke with them. And they, hahaha, just be flat. I mean, just no facial expressions, you know. And so luckily, there was a here in the States, there was a Danny Glover actor, he had a commercial, it was about a medication. But he said, I’m an actor, and I can laugh, and I can cry.

    Sam 36:17

    But if you have pseudobulbar affect, and it had a box up there, and the first one was brain injury, it was several listings in there that could call pseudobulbar affect. The first one was brain injury I recorded that took it to my local doctor.

    Sam 36:32

    And of course, I had that broken speech at the time. I was like, this is what’s happening to me, you know. And so he put me on, not the medication the commercial was for, but he put me on a medication that kind of tone my emotions down. And it did help, even though I had that crying for a long time.

    Bill 36:52

    Yeah. It was that bad that you needed it dealt with?

    Sam 36:58

    Yes not a tear. I’m talking about sob. and I’ll tell you a funny story.

    Bill 37:06

    All the time? Any time? Every time?

    Sam 37:09

    Yes it even happened when I went back to work. And we had a running joke with the nurses. Because I I was educating them on what I was going through. And so I said, If I say it’s about to rain, that means I need to walk off. I need to exit immediately.

    Bill 37:27

    It’s about to rain. I love that.

    Sam 37:32

    Every so often, a new nurse will be like, it’s sunny outside. I said, Nope. The other nurse was like, No, that’s his code word. He’s got to leave right now. Because I’d get in there with somebody that was passing away.

    Sam 37:42

    And I was emotionally all over the place, you know? And I can relate to these patients, you know, being on a deathbed. And so I would have some great conversations, but then they would trigger the rain.

    Bill 38:00

    So what’s it like for you now that was sounds like a really tumultuous time. You don’t really have a succinct way of explaining it. You’re all over the place. It sounds exactly like you were back there. That’s kind of the feeling that I’m getting from listening to it. What do you like now? have things settle down a fair bit? Have they changed? Are you the same as you were before stroke? Or are you a different little version of yourself?

    Sam 38:35

    Oh, I’m definitely a different version of myself. You know, we all all survivors, their old life back but I say you can never get 100% you might get 80% but is it really? 80% because man is so has so many layers, man. It’s eat totally different things now, things are actually hated for 44 years.

    Sam 39:00

    Coconut my mom used to always try to slip down into cookies or cake. I can bite it. It wasn’t so much the taste. It was the texture. Nope, it’s got coconut in it. I can eat a bag of coconut right now. You broke it open, man. I mean, I eat coconut all time. That don’t freak my family out. But they’re like, Whoa, this is kind of strange. You know?

    Sam 39:22

    You never had coconut in your cabinets. Coconut water. You didn’t ever have anything coconut. I used to love coffee, which most medical people do. I keep standard coffee. It don’t matter how much sugar I put in. It’s bitter. I try once a month and I can’t stand it.

    Bill 39:42

    It’s affected your flavor and your taste sensation and bitter is way more bitter than it has been.

    Sam 39:50

    It’s extremely bitter. I mean, that’s the best way the only way I know to explain coffee and it don’t matter what flavor it is when I drink it. It’s bittersweet be, you know, yeah, it is what it could have been from the Gamma Knife I meant my Gamma Knife experience. Whenever I would talk to other survivors, you know, they were either AVM unruptured, they were AVM that ruptured or a stroke.

    Sam 40:17

    But most of them didn’t have the layers that I had the stroke, the craniotomy, that clip in the glue and the Gamma Knife. And when I say I had some, I was lucky to have these three doctors, all three doctors had to agree to keep giving me radiation. I question that at first, when they stopped at 55 minutes, I was like, you got to think part of my brain is medical.

    Sam 40:43

    And so I’m thinking how many open hearts have ever taken care of that went in for a five hour surgery and came out for never? They come out on time or later? Most surgeries don’t come out early. Why is my radiation stopping at 55? And I’m not giving them 90 minutes, you know, am I gonna have to go through this again? And it was a blessing in disguise.

    Bill 41:07

    Why were they doing it? What were they trying to avoid? Were they’re trying to avoid something?

    Sam 41:12

    So where I’m at, you know, when AVM ruptures, they say, you know, you have like a 30% chance of re rupture within the first year. Every year it goes up, I have these multiple aneurisms. So yeah, I beat one odds of actually pulling through this. Am I going to be another one.

    Sam 41:32

    So the Gamma Knife was to close that AVM off. And they told me it would be two to three years. But when they backed off at 55 minutes, I just, again, my part of my brain that’s medically saying, and why didn’t you give me the whole 90 minutes, you know?

    Sam 41:49

    And because I remember I can remember early on like, the first month after gamma knife, they say, Oh, it don’t kill one hair follicle. Look, it was like I drank the biggest gallon of hot coffee and it burnt my mouth. Everything I couldn’t taste nothing. It felt like my mouth was scalded. Couldn’t smell nothing. It just it wiped out all my senses, you know?

    Bill 42:19

    So it sounds like they tried to minimize the harm of the radiation. Is that what they were trying to do?

    Possible Effects of Gamma Knife

    Sam 42:25

    Yes. And so jumping, kind of forward? Just to answer your question. I have to wear one of these now. AFO two and a half years later after my stroke. So I used to go not too far from where I am right now and run this two and a half mile bridge. But two and a half years later, I was in the hospital one night walk in and thought I had gum on the bottom of my shoe. It wouldn’t go.

    Bill 42:59

    Was it dog doo doo?

    Sam 43:01

    No, it was nothing. Oh, it was the radiation killing the neurons from my foot. And I was losing. I was starting to have drop foot. Yes, due to the location on my AVM. And now I get it. My neurosurgeon told me this, he said, Look, you’re going to lose something from this gamma knife.

    Sam 43:27

    What’s in those sales around the AVM? We don’t know, you could lose a function. You could lose taste speech, you could lose anything. It was the control of my right leg. So for two and a half years, I can run I mean, I worked out I’d done everything I could I just couldn’t speak real well. And my emotions were flipped upside down, you know. And I started having foot drop, and I didn’t know I had foot drop for about a month or so. I just kept falling. I’ve completely fallen and fallen hard.

    Bill 44:01

    You didn’t notice your leg moving differently or didn’t notice it. You weren’t aware of it?Or you were just what was it? How did you not notice it? And especially when you’re falling heaps?

    Sam 44:16

    Well, I was like, it’d be I’d fall when I’d get groceries out of the back of the car. And I’d fall completely backwards. Boom. Like what in the world? Where’d this come from? And so I actually walked into a new doctor that took over my case, just a local doctor that does my meds and stuff.

    Sam 44:36

    And when I turned the corner seen him I said hey man, I need a knee brace. I’ve just unstable for some reason. He said no. When you turn the corner I noticed you have foot drop. And so I tell people, you know you unconsciously walk heel to toe. You don’t think about it.

    Sam 44:52

    From the day you start walking you just walk but you make one of your feet. If you tied a five pound weight to the toes, One foot and tried to walk that would give you foot drop. And that would throw you off. It would just it throws you off completely.

    Sam 45:06

    I mean, if I don’t wear my AFO I’m gonna fall you know, I mean, I fall all the time. When I’m around the house, I don’t wear it. So I’m blessed. Man, I can talk giving if you gave me the option to run or talk. Forget running. I’m gonna talk.

    Bill 45:28

    Yeah I understand. And I, I kind of feel the same way I’ve got left side numbness, the entire left side feels numb, and it’s colder, and tenses up and it gets all messed up and naughty, and all that kind of stuff. And I need, you know, multiple massages, and all sorts of things.

    Bill 45:46

    So I can talk and I can get along with my life. And it’s really, really good. I don’t actually pay attention to any of my deficits, unless they’re causing me pain on the day, which is often but I don’t really care about them. Like, I’m not interested in giving them the time of day. Do you know what I mean? I’m not keen on dwelling on them and giving them any energy, it’s just, I’m gonna get on with it.

    Bill 46:18

    And if my balance is off, while my balance is off, if I stumble, which I do, often I stumble, no big deal. Of course, it’ll be a big deal if I stumble, and then fall and hurt myself. And I don’t want to be in that situation. But until that happens, I’m not putting any thoughts in my mind about what my future may be like, right now. It’s good.

    Bill 46:41

    And I’m going to do everything I can to put myself in the best situation so that I don’t end up tripping over later on in life, when it’s really important. And a hip fracture, can mean you know, can mean the end. Oh, God, you don’t even want to bring in the heel. I know, I know. But it’s a real issue. Because I’ve met a lot of stroke survivors have fallen, after they’ve been released from hospital to recover from the stroke, they’re doing well.

    Bill 47:12

    And then the fall makes it a massive setback, and really impacts their mental health. And it impacts their ability to have a cognitive recovery. And I didn’t understand how the two could be connected. But I’ve seen it a number of times now. And it’s definitely connected.

    Bill 47:29

    And that’s the thing. So I try not to give these things that I’m left with the time of day. I try not to give him any energy. It’s my way of going. Screw you. I’m getting on with it. And I’m gonna do the best I can. But but it but they, they don’t want to let me get away with it.

    Bill 47:49

    You know, they they remind me every once in a while, you know? You’re not as you were, you’re not normal. You’re different now. So it’s interesting to hear your perspective on the AFO and the foot drop and the way that you go about it. And that you’re blessed because we are blessed. And let’s face it, a lot of people are doing it worse. I hate saying that.

    Bill 48:13

    But everyone can say that about somebody else. So if you feel like you’re doing worse than me, and you’ve heard this, there’s somebody doing worse than you and it’s not a competition who’s doing better. It the company, that the comment is about focusing on what the blessings are. And I know stroke is shit. So hopefully I haven’t offended anybody. Right now in this last few minutes.

    Sam 48:41

    Well, that’s like so I jokingly say this, but I’ve been on many trips to try to bring awareness to stroke. So I went and met Kyle from share your stroke of genius up in New York.

    Bill 48:56

    Kyle Mengelkamp. Yeah, he’s a cool dude. I had him on the podcast.

    Sam 49:01

    Early in my recovery. So I’m talking about like, the first year so kind of speed past the Gamma Knife. I was stuck in a disability system that here that said, that we’re basing my disability off of my gamma knife and not my stroke and my craniotomy. Yeah they just looked at my last procedure, which was gamma knife and you can have gamma knife and go back to work the next day, you know.

    Sam 49:31

    But if they read deep enough, they would see like six weeks before, he was having a craniotomy and six weeks before that, he had the stroke. And so I was stuck in a disability system that would not help me I was gonna lose my house, my car and everything.

    Losing A Loved One In Relation To Pseudobulbar Affect

    Sam 49:47

    And unfortunately, this is where my brain injury will kick in. That I used to be able to block all this from seeing so much death in my career. People would say I was cold because like if I went to a funeral, I wouldn’t shed a tear. Now, if I think of something, get a little emotional.

    Sam 50:13

    And eight months after my stroke and everything. I would always call my dad whenever I would go to the doctor’s office, and he would call me vice versa. He just lived right down the street from me. So we were always working on cars or stuff like that. We had old classic cars and everything.

    Sam 50:39

    And I was in the shower about to go to my doctor’s appointment that morning that my phone rang and I opened the curtain I’m seeing it was him. I said, I’ll call him back in a second and something said, pick it up, picked it up, and I heard somebody saying my dad was on the floor.

    Sam 50:55

    And so jeans over a wet body out the door, I was hauling ass up there. And needless to say the one person I know I tell people, I put my hands on 1000 people and a 15 year career at that time. I mean, sometimes I go to code like, at Vanderbilt, I might go six times a night, you know, you might go to and you might save can lose five, save five, it’s just a you’re doing a job to save a life.

    Sam 51:25

    This is the one life I should have been able to save. And me and that fireman, we tried our hardest, but the therapist in me said, we’re going to save him and the son of me said come back Dad, you know, needless to say he passed away. And I’ve pushed against my family.

    Sam 51:46

    Because now I’m a brain injury survivor in my world has been rocked. And I need some normalcy in my life. And so I went to the doctor that has known me since I was a kid and I went to him and said, I promised you the rarest case at the end of your career. I need you to write two sentences for me.

    Sam 52:09

    Can return to work cannot do chest compressions. He wrote it. I went to the hospital where I work. I said I want to come back to work. They said whoa, we got to we got to test you. This was my way of trying. I said forget the disability. I don’t care what back money they would pay me. Money is not object come take my house. I don’t care. I want some normalcy.

    Sam 52:33

    And my normal life was the hospital. I knew these people would understand what I was going through. Yeah. And so they let me come back to work. But then they drilled me and this was the crazy part of my injury. I could look at a blood from a blood gas and tell you what to do. I was intubated patient, but then I couldn’t get my own locker. Yeah, or I would forget my password every day and have to call it it’s me again. I need a new password.

    Bill 53:01

    How long did it take for you to get back to work?

    Sam 53:06

    I went back to work a week after my dad passed away. I’m determined.

    Bill 53:11

    How long since that Gamma Knife though?

    Sam 53:15

    So my dad passed away. March the 30th I believe it was of 2016 I had the Gamma Knife on October the 30th. So my rupture was August the 14th. My craniotomy was September the 21st. My Gamma Knife was October the 30th.

    Bill 53:37

    All in 2016?

    Sam 53:39

    That’s 2015.

    Bill 53:41

    Oh, wow. Okay, so you we’re back to work about a year later?

    Sam 53:46

    It was less than a year I went back to work. I want to say maybe April the 15th of that year.

    Bill 53:54

    Okay. Did you feel I know that you got back? I know you were in the Did you feel confident? Were there times where you said I don’t know what the hell I’m doing?

    Sam 54:06

    I was confident about my ability. So that’s the crazy thing. I could look at a blood gas. I knew what the workload I need to do the breathing treatments. If I was intubating patients two weeks after I got back, you know, I was having to prove myself again.

    Sam 54:22

    And I had no problem with that. But then I had to ask help to get in my locker are calling it all the time or what’s the passcode to this simple little things that I should have been able to remember, were just and they’d say well put in your phone. I said oh behind the password. That makes sense.

    Bill 54:43

    I was at home recovering on my own because I was good enough to be at home alone after the brain surgery. Probably maybe two or three months after it was still quite warm and because it was quite warm in Melbourne, it was summer, I didn’t want to go for a walk outside, because the heat was really affecting me.

    Bill 55:08

    So I was allowed to drive at that time, and I would drive to the local shopping mall, park the car, and then walk in the shopping mall was my way of getting exercise. And I did it because it was air conditioned. Try, getting back to the car. Oh my gosh, I often spent many, you know, half an hour or more, walking through the car parks just trying to remember which car park I had parked in, and having no idea and then just walking around in circles trying to find the car. It was like a Seinfeld episode.

    Bill 55:45

    I mean, it was terrible. But I could do all the things that I needed to do to get there. I could drive I could, you know, walk, I could do some browsing, I could do all those things. And it just as soon as I had to turn my attention to getting back into the car, and no idea where it was not that single inkling of where it was. In fact, if it felt as it felt like it had been stolen.

    Bill 56:11

    Like that’s how bad it felt it was just terrible. And no matter what I did, It wasn’t getting better quickly. It got better, but it wasn’t getting better quickly. So I know what you mean about being able to do really complex tasks. And then the one thing that’s meant to be well, that appears to be simple, becomes really difficult.

    Bill 56:41

    I have another friend who was in Melbourne and also had a stroke. And she couldn’t find in her car, the volume button on her radio. So she could do everything else, but had no idea where the volume button was. Even if she was staring at it.

    Sam 57:03

    Wow, whenever I go speak to like groups or families often asked them, because because of my frontal lobe injury, I was real blunt at first. So I was like, so what would you do if you couldn’t wipe your ass or brush your own teeth? I mean, that’s a blunt statement, you know, but it pull somebody into the conversation.

    Sam 57:25

    Uh, whoa, I’ve never thought about that. I said, that’s two things you do behind closed doors, that’s private. But if you have a stroke, because I’ve talked to a lot of diabetes or CHF a lot of patients and I try to tell them, there’s so many things that can cause a stroke.

    Sam 57:44

    I said, there is no reset button on a stroke. There’s no Mulligan, you know, we’re not playing golf, and you get to let me pull the ball back here and hit it again. Your life changes from that moment that happens. And you know, I mean, but I would also ask them stuff like, so if I asked you this question.

    Sensory Overstimulation


    Sam 58:07
    If you had a choice of one sensory, what would you pick? Sight? Hearing? Taste? Smell? the feeling of air conditioner. He hit me on top of your head, you know? I said because any too will overstimulate you.

    Sam 58:22

    So I would get overstimulated. I’m so bad. I had to go to listen to I would drive down the interstate or to work. Listen to meditation music. Because what I listened to all the time and used to go take pictures of rock bands with I could hear things in the music I’ve never heard before. You know? I never heard that high hat.

    Bill 58:48

    Did you ever get over stimulated while you’re at work and had to take time out and rest? Because that’s a pretty full on environment. There’s noises, there’s really bright lights, there’s a lot of information on the paperwork that you’re reading.

    Sam 59:02

    Yeah, so I would get overstimulated and then the pseudo bulb effect would kick in. And oh, it would just I’d be I’d have to go hide in a room and catch my composure. It’s embarrassing. I got to where when I go to talk to a stroke group.

    Sam 59:19

    Because there’s always that one stroke person sitting in a wheelchair that has a frontal lobe that lashes out at you because I’ve, I’ve experienced that and I’ve had to tell him, yeah, I used to be like, you or this person over here that’s sitting in the wheelchair that can’t speak.

    Sam 59:35

    And I said, you’ll are going to see what my brain injury brings to me, because I’m gonna cry right along with you, as I bring my memories that I can pull back up. I remember myself sitting in that wheelchair. I remember a lot of that stuff. You know, the there’s a big gap of my recovery that didn’t it still don’t come to me to this day.

    Sam 59:58

    Here’s a funny little tid bit. So I was in a relationship. So I lost two weeks before my stroke. And me and my girlfriend split up. But first person I asked for was her. So my family didn’t know if we got back together or not. So who did they bring them up beside her.

    Sam 1:00:25

    And she tried to call the shots, which calls a bunch of family drama, you know, but yeah. I lost that spanned the time of us actually breaking up. And how I knew it was true was my dad, he loved this girl, or, you know, he really liked her. And he said, Yeah, you brought your convertible Mustang to my shop and said, I’m done. He said, your car sits at my shop. And so I knew my dad wasn’t gonna lie about it. And that’s the only reason I would have took my car back. So I had to go through a new relationship.

    Bill 1:01:08

    And a breakup again.

    Sam 1:01:10

    Yeah, it eventually ended because I had to tell my family, I don’t remember breaking up with her. And if she goes back to doing whatever she done, the causes break up. Then it’ll play out, you know, eventually. But I learned so much from her. And I actually taught her a lot of stuff.

    Sam 1:01:31

    I was dealing with a brain injury patient. She just never talked about her, she had a VP shunt in her head. And I had to teach her. So when I got back to where I could read the written word, I was like diving into my medical field, my medical records. And then I’ll have a dive into heart VP shot. And I told her, I said, You’ve had your VP shot for 12 years.

    Sam 1:01:54

    Do you know those things only last, they have a warranty of six months to 10 years, you’re going to have to have another brain surgery in your lifetime. And she would she was one of those ones that denied her injury. You know, it, if I don’t speak about it, it don’t exist. But it gave so much clarity to me, of our up and down relationship. You know, when she didn’t hydrate well, when she didn’t eat the right amount of food.

    Sam 1:02:24

    People don’t realize you don’t hydrate guess what? You still had the same amount of blood cells and fluid in your body. If you have a VP shunt, it’s because you have overproduction of cerebral spinal fluid. And I would try to educate her. But again, that was just a little tidbit that my two weeks of lost memory actually lost a breakup. So I had to go back and relive all that stuff. Like I said, this onion has many layers, man.

    Bill 1:02:56

    It certainly does. I mean, that’s what strikes survivors often find that’s one of the hardest things to convey is that stroke recovery is not, you can put a timeline on, it’s not like a broken ankle, or broken foot or broken arm, it doesn’t have six weeks, and then you take the cast off, and then it’s better.

    Bill 1:03:13

    And then you go through a little bit of rehab, and you go back to your normal life. It’s not like that. And that’s one of the hardest things. And I’ve got people who I coach through their own recovery. And it’s, but but it’s been nine months. Why am I not better? It’s been around.

    Bill 1:03:29

    And so how do you get the message across to somebody that it’s, I’ve been 10 years nearly, and I’m still recovering. And the recovery has changed a lot. It’s different, but I’m still recovering, I might be in my emotional phase of my recovery, or my psychological phase of my recovery, whatever it is, it’s still ongoing, it hasn’t stopped.

    Bill 1:03:55

    So I hate doing that to people who are so early on. And potentially giving them the the news that sorry, this is going to continue for far longer. And I’m going to have to disappoint you and tell you that in 12 months, you’re not going to miraculously get better. It would be great, but it’s very, very rare.

    Sam 1:04:15

    Well, I found out, I said can I get exposed to so I mean, I seek out every brain injury and every stroke survivor that comes into my hospital. And I found out that I mean, we as humans. We don’t realize it took us a year to learn how to walk. But when we get it taken away from us, we want it back tomorrow.

    Sam 1:04:40

    And it just don’t work that way. You know, but we want it now. Now now and it’s hard. It’s hard for a stroke survivor. Like I said, the first two years, I was so focused on bringing light to the world about stroke, you know, so I traveled across 10 different states and went back to every hospital that I worked in.

    Sam 1:05:03

    Walked in with street clothes and tattoos, always say, because you get judged by the your first sight. And I would go in there and say, Can I speak to a stroke advocate? And you wouldn’t believe how many hospitals fail at that one question. Most of them, small hospitals don’t have a stroke advocate.

    Sam 1:05:26

    But so I went back to Vanderbilt, and they were spot on. I mean, I went and talked to two stroke advocates, I actually, so when I worked at Vanderbilt, they didn’t have a neuro residency there. But I’d done my research and they had started when in 2013. So as I was talking to the head stroke advocate, she requested, they just hired a new person, I went up there to talk to him, she got called to income and stroke into the ER at that moment.

    Sam 1:05:56

    And so I went and talked to him for a while. And then I said, Hey, let me go, where’s these residents at and crazy how I used to work there, when I walked in, there was a totally different place. But as I walked the halls, I started getting memory back. And so I went and found those residents.

    Sam 1:06:13

    And I mean, to me, residents in the hospital, always say, like a cobia, quail. There’s one dominant one and the rest, follow wherever they go, you know, so I wouldn’t seek them out. And I showed him my scans and everything. But they got called to that stroke that was coming into the ER, but I was glad to see that they had an advocate they had, because the one question I asked is, okay, you save the stroke survivor.

    The Stroke Advocacy


    Sam 1:06:40
    When you send them home what do you tell their family, because if you don’t educate that family, you’re sending them home with a, what they think is a little Chihuahua on a leash, but they really got a rock wall or a bulldog on that leash. And eventually, after about the 10th time of them, tell him their strokes of average, you’re so blessed, they’re going to get bit because that stroke survivors go lash out.

    Sam 1:07:08

    It’s just that’s and so my early on thing was, if I go talk to stroke survivors, they’re going to forget me. If I talk to the families, yeah, that’s the best way for me to help the stroke survivor, I can get them to understand that they might repeat themselves every five minutes, they might cry, they might lash out, but they might not remember it five minutes later.

    Sam 1:07:33

    It’s a tough pill for the family to get cussed out. And they’re taking care of this person, and then they leave out and come back in and the survivor act like nothing happened, that still staying that family member, it can be hard for them to cook food at night for that person, you know.

    Bill 1:07:52

    And make a tasty, yeah, they’re not gonna make it, they’re gonna make a terrible.

    Sam 1:07:57

    And so when I went to these hospitals, I went back to some major medical centers, I’m not going to call their name out, but I walk in there. And I let one I love working at the hospital. And I let them pass me around for two hours. That’s Oh, go here and see this person, go over here and talk to this person.

    Sam 1:08:16

    And finally, this lady came to me instead. Who are you looking for? I thought I had a stroke. She said, Oh, we have a great stroke team. I said okay, I survived. I’m going home, who talks to my family? And they had no clue. And that’s where the break in the link is.

    Sam 1:08:35

    If you don’t teach a family, look, they have a frontal lobe injury, they’re gonna cuss you out. They’re gonna do all kinds of stuff. They don’t have a filter, that’s a set up for failure. Or, hey, they got memory problems, you know, or like me, I couldn’t read the written word for a good amount of time, you know. And so that was frustrating for me. And you come in, tell me I’m blessed. I can’t read.

    Bill 1:09:04

    Yeah, and it’s fresh. It’s just happened. You’re in the hardest part of the recovery, the very early phase and you’re navigating it you don’t know what’s going on. It’s all new. Well, you perhaps more better equipped than most people but you’re right. The rest of the families and the survivors with no idea. I didn’t know what I had to deal with when i was going to come home and my wife had to cop the brunt of that. She really copped it.

    Sam 1:09:34

    If you go on the support groups anywhere on Facebook, and you type in this question, how many people are still with their partner that they were with? When they had their stroke? Yeah. 80 to 90% of those people will say they’re not willing. They walked away.

    Bill 1:09:52

    That’s a great question. I’m gonna ask that on my Instagram one day.

    Sam 1:09:56

    There’s there’s some up there that you know, they they stuck in there. with them, but they are the few, you know. And so I get on there and try to help people, man. I try to answer questions, but there’s also low, there’s people on their height, say there’s people in some of those support groups that are pissed at the world and try to start fires.

    Sam 1:10:18

    And you know, no matter what your belief is, when you go on there like this one guy, he goes on there every year, and he has this one question and man, it makes the fire flame. Yes, this simple question. Is there any atheist stroke survivors only? Oh, my God, everybody believes in any religion comes on there.

    Sam 1:10:44

    And I thought I believed in God, but what God would do this to me and just Oh, they. And that’s what this guy’s wanting to do. He’s wanting to start the fire. I’m pissed at the world. This happened to me. I want a bunch of people to be pissed.

    Bill 1:10:58

    That’s fair enough that people are pissed at God or whoever. It’s fair enough. Like, I totally get it. And I had this exact same thing happened on my Facebook Recovery After Stroke. Where I asked the question, the question was, was stroke the worst thing that happened to you?

    Bill 1:11:19

    And some people said, they found God. And God helped them through, which is an amazing thing, whether they found them or whatever, I don’t mind. Yeah, whatever helped you through. And then this other person said, What God? You know, God does terrible things to people and blah blah.

    Bill 1:11:37

    So what he was trying to do was school them on their experience of finding God. And that’s not nice. If he said, if the question was, did you find or lose God during your stroke experience, then his comment was relevant, and I’m happy to hear it.

    Bill 1:11:54

    But in this instance, he was trying to minimize somebody else’s experience. And he did not want to listen to me, or read my comments. When I said to him, it’s just not appropriate. Like this is not a religious page. This is a stroke page. A religion is another page.

    Sam 1:12:12

    On that note, I had to actually, it took a long time for me to not take it personal when people would do that, because I hadn’t realized, Hey, I’m talking to people with a brain injury. What do I expect? Is though, yes, I mean, myself, I have a brain injury, I have to convince people. Look, I am a stroke survivor. I have, I don’t tell people my challenges outside of the hospital. I know I struggle here and there a little bit.

    Sam 1:12:42

    And I told him, I said, when I can’t do my job, I went and told my boss when I can’t do my job, I’ll personally turn in my resignation. I will not put anybody at harm’s way. Yeah, you know, and I told her that early on, I tell her every year but yeah, it’s I tell them, these people have a brain injury.

    Breaking Barriers


    Sam 1:13:00
    You go in there. And because we have so many patients come in and they don’t. Some nurses will come and tell me there’s a brain injury patient in this room. Go see if you can give them some insight, you know. And man it’s like, I tell people that a brain injury crosses all race, religion, all that stuff.

    Sam 1:13:23

    You can walk into a room with a total stranger. If they see your scar, or you see their scar is like instant connection. This person knows where I’ve been knows what I’ve been through. So it’s a community that like, there is no barriers to it. Except we have brain injuries, and sometimes we lash out.

    Bill 1:13:45

    Yeah. And we speak inappropriately, but that’s okay. That’s why we’re good at forgiving as well. We’ll forgive. Sam, thank you so much for being on the podcast. Thank you so much for reaching out. Thank you for sharing your story. I’m always saddened to hear when life continues to happen during stroke recovery, and we lose loved ones, and people pass away.

    Bill 1:14:08

    It’s the nature of it, like things don’t stop because you had a stroke. And it complicates recovering. It makes things harder, and it makes people feel a little bit more overwhelmed. I’m glad that you cried on my podcast because that’s the clip I’m going to use to show everybody that men can cry, and that it’s okay.

    Sam 1:14:32

    Hey, I have no problem with it. The people that are around me know that it can come at any time now. It’s not as bad now but if I go talk to people or if I’m there’s a patient pass away or I’m talking to the family members. And I have to say, you have to excuse me, I have a brain injury. I can’t control this. You know.

    Bill 1:14:55

    But isn’t it accepted that medical professionals I will cry every once in a while, especially around patients. Isn’t that a good thing?

    Sam 1:15:05

    So your new nurses usually do. But as you’ve been in it 10 plus years? It hardens you. Well, you have to be able to do the job, you know, this patient passes away, but you got four or five other patients you got to take care of. So, you know, my family didn’t know what I’d done for a living.

    Sam 1:15:30

    I mean, they knew but they didn’t really know, you go ask the average person about a respiratory therapist. And they did give breathing treatments, their treatment jockey, they call us, you know, yeah, they don’t realize we go to every code, we, when the doctor writes this on the piece of paper, or send it across on a computer, pull the patient off, we have to do that.

    Sam 1:15:50

    And that was part of my, when I had Gamma Knife. My family thought I was seeing spirits. Because I was talking about these people. And they said, Oh, he’s I mean, he’s way out there, something’s going wrong with him. And it wasn’t. So a lot of times you go to a code, if you’re in a big hospital, you don’t know this patient, it’s on another floor, you’ve never seen this patient, you go in there and do the job and either save them or you don’t.

    Sam 1:16:23

    And then you got to go right back to work. And so I’ve seen little babies pass away, I’ve seen just, I’m godly amounts of people. But when after my gamma knife, when I would try to go to sleep, the best way to describe it, and I’m describing like this before to a group.

    Sam 1:16:43

    When I close my eyes, it looked like an old nine millimeter film reel going. And it was every code that I’ve ever been to. I’ve talked about vivid, like it was a movie, back to back to back to back. So of course, I didn’t want to sleep. And so I went for like three days without sleep.

    Sam 1:17:03

    And then I was really hallucinate and thought people was trying to break in my house and stuff, you know, but finally, I gathered across to my family, what I’d done and what it has seen, so this part of my brain being injured, those little Flashpoint memories of not even memories, not something that you can actually pull back up into memory, Oh, I remember that code.

    Sam 1:17:26

    When you do 200 or 300 codes in a year, you’re not going to remember every one of them. And so I was seeing these people like I was in the room doing the actual event. And I did not want to close my eyes. I’ve wrote about that before. It just, it was a memory that I I would have never thought I could pull those people back up. I mean, remember six year old kid passed away from undiagnosed diabetes, you know, I’m it just so much clarity, I could hear his mother cry.

    Bill 1:18:02

    And if you have to have that with you every day at work, you’re not going to be able to work really are you so you do have to separate yourself. You do have to switch that off, and you’ve got to put it behind you otherwise you’re going to be unable to help anybody else. It’s going to be terrible.

    Sam 1:18:18

    Yes. And it is not that we’re cold. We have to do a job and to be able to do that job. You have to go clear your mind and do the job. Hoping the best outcome but bring a brain injury into it. It turns the movie reels on, you know.

    Bill 1:18:35

    And what did you call it? It turns the rain on from time to time.

    Sam 1:18:39

    Oh, yeah. It’s about to rain.

    Bill 1:18:44

    Sam, thank you so much for being on the podcast. I really enjoyed our chat. Thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years now I know firsthand how difficult it can be to get the answers you need.

    Bill 1:19:06

    This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave the hospital you no longer have medical professionals on tap.

    Bill 1:19:22

    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you’re not alone. And there is a better way to navigate your recovery and build a fulfilling life that you love.

    Bill 1:19:38

    I’ve created an inclusive, supportive and accessible membership community called recovery after stroke. This only one support and resource program is designed to help you take your health into your own hands.

    Bill 1:19:51

    This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety and more To find out more and to join the community head to recoveryafterstroke.com see you next time

    Intro 1:20:06

    importantly we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments, protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:20:23

    All content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:20:40

    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 1:21:01

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:21:25

    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Emotional Changes After Stroke – Sam Hanes appeared first on Recovery After Stroke.

    1 hr 22 min
  • Developing New Tools For Stroke Survivors – Elizabeth Vasquez

    Elizabeth Vasquez from Stanford university is looking for stroke survivors to participate in her stroke recovery research project which aims to support people at home with a low cost physical rehabilitation solution.

    Email: [email protected]
    Sign Up: www.stanforduniversity.qualtrics.com

    To take the survey follow this link https://elizabethvasquezresearch.weebly.com/“To be eligible you must:
    ● Speak English or Spanish
    ● Have had a stroke before the first COVID-19 lockdown in your town/city/etc
    ● Have trouble moving your hands, arms or legs because of the stroke
    ● Be 18 years of age or older
    ● Live in the U.S.A”

    Highlights:

    02:12 Introduction
    10:44 Language issues
    13:10 Dedication to helping others
    13:31 The Ph.D. Project
    16:51 How to get involved?

    Transcription:

    Elizabeth 0:00
    And so the project is really all about being able to ask people what it is that they need. And then based off of that information of what people say that they need for specifically physical therapy, I want to be able to provide some sort of, at-home low-cost rehabilitative stroke technology.

    Elizabeth 0:19
    To help people so that they can get as much therapy as possible, regardless of their socioeconomic status, or how much money they have or if they’re in a rural area. So that’s kind of the long-term goal is to be able to create physically build something and then test it.

    Elizabeth 0:35
    So make sure that it’s like clinically valid. That’s the goal for the next three years. And so the first step of that is going to be this survey that I’m currently doing right now, which is what I am seeking participants for.

    Intro 0:50
    This is the recovery after stroke podcast, with Bill Gasiamis help helping you navigate recovery after stroke.

    Bill 1:03
    Hello, and welcome to recovery after stroke, a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:15
    I’m your host three time stroke survivor Bill Gasiamis. After my own life was turned upside down and I went from being an active father to being stuck in hospital. I knew if I wanted to get my life back to the life I loved the for my recovery was up to me.

    Bill 1:30
    After years of researching and discovering learn how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:45
    If you enjoy this episode and want more resources, accessible training and a hands on support, check out my recovery after stroke membership community created especially for stroke survivors and caregivers. This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence to recoveryafterstroke.com To find out more after this podcast.

    Introduction – Elizabeth Vasquez

     
    Bill 2:12
    But for now let’s dive right into today’s episode. This is Episode 153 and my guest today is Elizabeth Vasquez. Elizabeth is a mechanical engineer and a third year PhD student who is right now recruiting stroke survivors to her research project which aims to develop technology that will help with rehabilitation of limbs, and most importantly will be low-cost so that it can be accessed by stroke survivors that did not have the means to afford expensive solutions that are on the market already.

    Bill 2:48
    So please listen to this episode and reach out to Elizabeth if you would like to be interviewed and helped with this project. All the links will be available in the show notes which can be found by going to recoveryafterstroke.com/episodes.

    Bill 3:06
    Elizabeth Vasquez welcome to the program.

    Elizabeth 3:09
    Thanks for having me.

    Bill 3:10
    Hi, thanks for reaching out. Because I love helping people and you’re somebody who’s studying. And you are looking for people to help you do some research and further your studies. And you reached out to me because of the podcast and because of the fact that I speak to stroke survivors. But before we get into that part of it, tell me a little bit about you and how you got to be researching and studying in this field?

    Elizabeth 3:41
    Yeah, so my name is Elizabeth Vasquez. I’m from a small border town in South Texas. Oh, Brownsville, Texas. Basically, this is kind of an underserved medically underserved area. So I grew up around less affluence than other areas.

    Elizabeth 3:58
    I went to undergrad at MIT. So I went from South Texas to Boston, it was a big cultural shock for me, I learned a lot of wonderful things and decided that I was really excited about research, I really wanted to help people, and so I came to Stanford University, and I’m currently a rising third-year PhD student here at Stanford.

    Elizabeth 4:19
    And the reason I’m interested in stroke in particular is because actually, when I first started here, someone in my family had a stroke. And it was in that moment that I realized there isn’t really a lot of support that at least that I felt, particularly for people who might not have the resources to be able to afford therapies, there isn’t really a lot that’s available to them. And so I kind of decided to make this my PhD project is kind of to make low cost rehabilitative technology for a stroke survivors.

    Bill 4:49
    You came to study in this field, in a similar way to a lot of other people that I’ve spoken to who study in the field of supporting stroke survivors in some way, shape, or form. Who was the person that, you know, that had a stroke?

    Elizabeth 5:04
    My father, actually.

    Bill 5:06
    Wow. Okay, so that would have been a big shock for the family. How old were you when he had a stroke?

    Elizabeth 5:13
    I think I must have been it was very recently. So I think it was two years ago. So I was 21 or 22.

    Bill 5:20
    Right. Okay. So what are some of the feelings that you felt when your dad had a stroke, and you didn’t have the tools and resources to support him? What does a child go through when their dad has a stroke?

    Elizabeth 5:35
    Well, I’m at this point, like I said, I was in my 20s. So I was a little bit older, which I think was nice. But I think it’s just very shocking and scary, because strokes present very differently.

    Elizabeth 5:50
    And I think you always hear Oh, you know, your face starts going numb or something, that’s a stroke. But for my father, it was the case that his vision started to blur up. And so it wasn’t clear that it was really a stroke, until we found out that it was, it was really scary because things like for example, in his case, he was very forgetful.

    Elizabeth 6:13
    He was forgetting things, he didn’t know who I was, or I guess where he was. That’s a very scary thing. And I think, for me, one thing I didn’t mention in the intro is that I’m a mechanical engineer. And so I like solving problems. I like being able to find a solution. And it’s really hard to sit there and feel helpless, like there is no solution to this that I can come up with right now.

    Elizabeth 6:38
    I just have to wait and hope that it gets better and hope that, you know, in the moment, when he’s in the hospital, we have no idea if it’s going to get worse, if it’s going to get better. No one can tell you how long it’s going to be. It’s very ambiguous. And it’s very unclear what’s going to happen next. And that’s very scary.

    Bill 6:55
    And it’s disempowering, isn’t it?

    Elizabeth 6:57
    Yeah, exactly, exactly. Especially I think as an engineer, I like to be able to, you know, I can solve it, I can fix it. But that’s not necessarily the case. In the moment, I really couldn’t.

    Bill 7:10
    Yeah, it’s not about applying logic to that problem and getting a solution that follows a natural path. And there’s a step to it, or there’s a process to it. There’s a chart you could follow. It’s not like that at all stroke is really, really challenging to handle. Does your dad live in the same border town in Texas that you did?

    Elizabeth 7:33
    Yes, Yes, he does. So he lives with my mom. And yeah, so they’re there together? I think the I suppose somewhat nice thing about it is his stroke kind of did not manifest in too many physical afflictions. But I think in a sense, that’s also additionally difficult because people might look at him and say, Oh, he’s totally fine. But he’s not.

    Bill 7:59
    Yeah. So as a result of the stroke a couple of years ago, has your dad been able to get back to work at this point, or get back to being himself in some way, shape or form? Or is he still having some challenges that he’s needing to manage?

    Elizabeth 8:16
    Yeah, he definitely still has challenges that he’s trying to manage. But he’s gotten to a state where he can go back to work, which is really, really incredible. But yeah, he definitely has difficulties with certain things.

    Elizabeth 8:33
    Some things take a little bit longer than they used to. And I think some things are frustrating, because when you look back at what you used to be able to do and what you can do now, it’s really hard, I think, to sometimes be able to see the progress. So I think that’s something he struggles with as well.

    Bill 8:48
    Now, how old was your dad at the time?

    Elizabeth 8:54
    He was in his 60s. And hopefully he doesn’t see this and not know that I don’t remember his exact age, but he was definitely in his 60s.

    Bill 9:04
    60s is fine. I mean, he’ll appreciate that. Sometimes people forget things. So it’s all right, don’t worry about it. So he’s in his 60s and what services did he have available to him in this border town near Texas? Sounds like there wouldn’t have been too much. Because it sounds like it’s a rural area. Would that be right?

    Elizabeth 9:27
    And so technically, it’s semi-rural. But so he actually had his stroke here at Stanford when he was dropping me off in grad school, which was, I guess, a blessing and a curse at the same time. So he got to come to Stanford hospital, and it’s one of the best in the country, which is really great.

    Elizabeth 9:47
    But I think once he got back to South Texas, there isn’t really a big Stroke Center, for example. And one thing that I think is troubling, I think one thing that I realized is he needed to go to someone who focused on neurology.

    Elizabeth 10:05
    And in order to do that he has to drive all the way to Houston, which is a multiple hour drive just to see a doctor who can kind of see him for that, which I think, luckily, my family is in a situation where like, that is possible. But I think for some people, a lot of people in my community, that’s not really an option.

    Bill 10:25
    It definitely isn’t. Oh, we’re from a Greek background. So the people that are come across if you have had a stroke, or from a background that English is not their first language really also then struggle with communicating their needs, or understanding the issues that they need to overcome.

    Language issues


    Bill 10:44
    And then the doctors also have a hard time getting the message across. Does your dad have English as his first language? Or is there also a information sort of issue there because of English not being his first language?

    Elizabeth 10:59
    Yeah, so English is not his first language. Spanish is his first language. But he’s speaks English very well. I think he speaks English better than Spanish at this point. So he’s been okay in that front.

    Elizabeth 11:11
    But I know that the large majority of people in the community where I come from Spanish is definitely their primary language. And I think a lot of kind of what you’re speaking to is that a lot of the services that are available are available in English primarily. And even if they do translate it, translation is not always great.

    Intro 11:31
    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 actually recover? What things should I avoid in case I make matters worse, or doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 11:55
    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

    Intro 12:14
    These seven questions are the ones bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide, it’s free.

    Bill 12:33
    Not only is information lost in translation, it’s also lost because the stroke survivor is going through a neurological problem. And it’s sometimes extremely difficult to take information on. And to put that into memory and to remember what it is that you’re being told or that you need to know about your condition.

    Bill 12:55
    So you’re really motivated, right? You’ve got a lot of motivation to help out in some way, shape or form, obviously, it’s gonna hopefully benefit your dad, but then it’s going to benefit the greater community as well.

    Dedication to helping others – Elizabeth Vasquez


    Elizabeth 13:10
    Yeah, yeah, definitely, the plan here is to basically dedicate the next three years of my life to making something that is useful and helpful to people. And so that’s why the goal here is to make something that’s useful to kind of everyone. So focusing on lowcost at-home rehabilitative start technology.

    The Ph.D. Project – New Tools For Stroke Survivors


    Bill 13:31
    Awesome. Tell me about the PhD project, what it’s called, and then I know you’re looking for people to come on board to volunteer their time. So we’ll talk about that as well. But tell me about the PhD project first, what is it called?

    Elizabeth 13:47
    Yeah, so I’m doing mechanical engineering PhD. And so we got to get to pick the project that we want to do. Thankfully, I am funded by NSF.

    Bill 14:00
    Who’s the NSF?

    Elizabeth 14:02
    The National Science Foundation in America. So I’m being funded through them. And so the project is really all about being able to ask people what it is that they need. And then based off of that information of what people say that they need, for specifically physical therapy, I want to be able to provide some sort of at-home low-cost rehabilitative stroke technology, to help people so that they can get as much therapy as possible, regardless of their socioeconomic status, or how much money they have or if they’re in a rural area.

    Elizabeth 14:37
    So that’s kind of the long term goal is to be able to create physically build something and then test it. So make sure that it’s like clinically valid. That’s the goal for the next three years. And so the first step of that is going to be this survey that I’m currently doing right now, which is what I am seeking participants for.

    Elizabeth 14:56
    The survey itself is basically the idea is to ask people both well served and underserved stroke survivors, what it is that they want, what it is that they need, and then kind of to be able to from this first work, I’d like to be able to provide recommendations for other people who might be trying to build stroke technology, kind of give them some guidelines, maybe some design constraints about what is important and what matters here.

    Elizabeth 15:23
    And so for the survey itself, I’m looking for people who have difficulty doing the things that they would like to be able to do with either their hands, arms or legs, you do need to be able to speak either English or Spanish. So the survey is available online in either English or Spanish.

    Elizabeth 15:42
    I’m looking for people who had their first stroke before the first COVID-19 lockdown in their area, you need to be 18 years of age or older, as well. And you need to currently be living in the United States. And so if those are the cases, then someone would be eligible.

    Elizabeth 16:01
    And I have a flyer and a QR code and a link to take an online survey to kind of just kind of give me your experiences about what your experience has been with rehabilitation, the kinds of technologies you use, kind of how satisfied you are with all of that. And from that, I want to be able to start building a device that would be helpful and useful for people.

    Elizabeth 16:22
    It’s completely online. So you can just follow the link, it’ll take you to a Qualtrics survey. And you can just fill it out at your own pace, you can pause it and continue it however fast you would like. And then there is an opportunity at the very end to say if you would like to possibly participate in a follow up interview, then you can select that option. And then I’ll kind of randomize the people who said yes, and you may be contacted for a follow up interview, which would also be for this study.

    How to get involved in the Stroke recovery research


    Bill 16:51
    Excellent. And in the first instance, how do people get in touch with you? Where would they go to get in touch with you and say that they would love to be involved in this study?

    Elizabeth 17:04
    Yeah. So you can send me an email to my Stanford email, which is my last name and my first initial @stanford.edu. So that’s [email protected]. And in addition, I have some flyers, recruitment information, social media, possible social media posts. So if you send me an email, I can send you any of those things. And you can get in contact with me and I can send you the link to the survey.

    Bill 17:33
    Excellent. So when you get this information, how many people do you hope to get it from first? How many people you’re looking for?

    Elizabeth 17:47
    Yeah. So I would ideally like to get at least maybe 60 more participants who’d be willing to fill out my survey, the more the merrier. So I will not be as many people as are willing and eligible to participate, I would love to have you. Again, it’s just an online service. You don’t have to come in person or anything like that. You can do it at home, you can do it on your phone, you can do it on your computer.

    Bill 18:22
    And can people zoom with you and meet with you beforehand? If they have any questions? Or if they’re having difficulty filling out the form either in English or in Spanish?

    Elizabeth 18:31
    Yeah, actually if they don’t have internet, then they can also call the number that’s on the flyer itself. And then I can fill it out with them. But yeah, if they have any questions, or they want to know anything more about the survey that I haven’t listed here to help them decide, then they can go ahead and send me an email.

    Elizabeth 18:50
    And actually the phone number that they can call if they are interested in filling out the survey over the phone, or as well, if they have questions is 650-334-3277.

    Bill 19:04
    Fantastic. I am going to have all of that information at the top of the transcript of this podcast episode. So anybody who wants to get in touch with Elizabeth can go there and get those numbers direct, and then get in touch with Elizabeth either via the phone number, the email address, we’ll have a link hopefully to the form as well, where you can directly go and get the form and download the form.

    Bill 19:33
    You can reach out to me if you get stuck in you need any questions answered. And then I could fold them on to Elizabeth. So I think we’ve covered everything. I really look forward to being involved in that follow up and finding out how your project is progressing and how you’re going with the recruitment process and what you’ve been able to achieve and where you might need maybe some more help.

    Bill 20:01
    A little bit of a reminder, perhaps we can do another chat in the future. I really thank you for reaching out to me, firstly, I really appreciate the fact that you’re doing this project and looking out for other stroke survivors, that is an amazing thing to be doing.

    Bill 20:17
    And I appreciate that for you. It’s close to home. So you really want to make a difference for your dad. But you can see how it’s going to support other stroke survivors as well. I think that’s lovely. A lovely space to be working in.


    Elizabeth 20:30
    Yeah, thank you so much. I mean, thank you for answering my messages and for giving me this time to kind of express all of this stuff. I really appreciate it.

    Bill 20:40
    Well, thanks so much for joining me on today’s recovery after stroke podcast. If you ever wish there was just one place to go for resources, advice and support in your recovery. And if you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 21:01
    This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. The symptoms don’t follow a rulebook, and as soon as you leave the hospital you no longer have medical professionals on tap.

    Bill 21:17
    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you are not alone and there is a better way to navigate your recovery and build a fulfilling life that you love.

    Bill 21:32
    I’ve created an inclusive, supportive and accessible membership community called recovery after stroke. This only one support and resource program is designed to help you take your health into your own hands.

    Bill 21:46
    This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community just head to recoveryafterstroke.com

    Intro 22:00
    importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals that pinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 22:17
    All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 22:34
    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 22:55
    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 23:19
    Medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide. However third party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Developing New Tools For Stroke Survivors – Elizabeth Vasquez appeared first on Recovery After Stroke.

    25 min
  • Neuropsychology In Stroke Recovery – Dr. Jennifer Sumner

    The importance of neuropsychology in stroke recovery can not be overstated. Having a baseline of where your cognitive deficits are, helps you to track how far you’ve come and identify areas that need additional resources.

    Socials:

    www.instagram.com/dr.jennifersumner/
    www.kaizenbraincenter.com/

    Highlights:

    02:15 Introduction

    06:01 Neuropsychology in stroke recovery
    12:46 Multi-disciplinary team
    20:46 Tracking progress and tailoring support
    30:04 Food for brain-health
    38:31 Teaching others
    47:41 Giving yourself a break
    59:39 Building a toolbox

    Transcription:

    Dr. Jennifer 0:00

    I think that’s like shooting a patient in the foot. What’s that going to do for their progress to tell them it’s going to be stunted after a while? Because one research shows us that that’s not necessarily true. So communicating the positive gains, and then the fact that okay, well, maybe this isn’t going in the direction you want.

    Dr. Jennifer 0:19

    So let’s tweak it a little bit so that you can get where you want. And there are always things you can do to compensate for something that you’re struggling with, modify something if it’s not working. I’m a big believer in continual improvement, right? People that don’t have strokes are constantly improving. Why would somebody that’s had a stroke not do the same thing?

    Intro 0:46

    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 0:59

    Hello, and welcome to recovery after stroke a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:12

    I’m your host at three times stroke survivor Bill Gasiamis. After my own life was turned upside down, I went from being an active father to being stuck in hospital I knew if I wanted to get back to the life I loved before, my recovery was up to me.

    Bill 1:26

    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take the freedom you deserve.

    Bill 1:44

    If you enjoyed this episode and want more resources, accessible training and a hands on support, check out my recovery after stroke or membership community created especially for stroke survivors and caregivers.

    Bill 1:56

    This is your clear pathway to transform your symptoms, reduce your anxiety, and navigate your journey to recovery with confidence. Head to recoveryafterstroke.com To find out more after this episode. But for now, let’s dive right into today’s episode.

    Introduction – Dr. Jennifer Sumner


    Bill 2:15
    This is Episode 152. And my guest today is neuro psychologist Dr. Jennifer Sumner and in today’s episode, we will discuss the importance that neuro psychology plays in stroke recovery.

    Bill 2:29

    Dr. Jennifer Sumner, welcome to the podcast. Thank you for having me. I get really excited when I see people online that help people who are struggling with neurological conditions.

    Bill 2:45

    And, of course, you know that my background is stroke and the people that listen to this podcast are mostly stroke survivors. But I’m curious about you. What kind of work do you do? What are your qualifications? How did you come to be involved in the field that you’re involved in?

    Dr. Jennifer 3:03

    Yeah, I got my degree, my doctorate in clinical psychology, but I specialized in neuropsychology. Neuropsychology is the study of how the brain impacts behavior, emotion, cognition.

    Dr. Jennifer 3:22

    And so throughout the clinical psych program, you take training and courses in neuropsychology, you begin to see patients that have neurological disease or injury. Then I went on for an internship and fellowship in neuropsychology, mainly working in these populations with stroke survivors, dementia patients, people with traumatic brain injury.

    Dr. Jennifer 3:47

    And then I have done research here in San Diego, California at the University of California, San Diego, for the last 15 years. And then I also work at a center as the director of neuropsychology.

    Bill 4:02

    Awesome. Sounds like a very broad base of backgrounds and therefore, things that you can apply to supporting people recovering from stroke. I’ve got this little document that people can go and download from my website, it’s called seven questions to ask your doctor about your stroke.

    Bill 4:24

    And one of those things suggests that perhaps they need to ask about an evaluation so that they can understand what the deficits are. So that therefore, they can ask their GP or their regular doctor, who else can you send me to? Who else should I be going to see?

    Bill 4:44

    It’s one of the things that I wish that I had known because it took me about, I’d say took me about four or five months for somebody to remind me that perhaps I needed to see a neuro psychologist and the person who did that was my psychologist.

    Bill 5:02

    And of course, when I was saying my psychologist after the first and second bleeds in my brain, I didn’t know what else to ask. I didn’t know what to do. I just went where I could.

    Bill 5:14

    And neuropsychology assessment was really important. Now the challenge was that my assessment because I went through the public system in Australia, which I didn’t realize, as well, because I had a brain injury, it didn’t occur to me that I could just pay for this evaluation.

    Bill 5:32

    It took about nine months for me to get there. By the time I got there, a lot of my deficits in this after the second blade had kind of started to dissipate, things had started to switch back on.

    Bill 5:44

    So that leads me to the question, why is neuro psychology important, especially the evaluation part of it, after somebody is diagnosed with a brain injury or some kind of a brain condition?

    Neuropsychology in stroke recovery


    Dr. Jennifer 6:01
    So that’s a great question. And I think you bring up a good point is, you know, I’m often surprised at how many providers don’t refer patients directly to neuropsychology in the beginning, and that patients do have to learn it after the fact. Initially, when someone has a stroke, they are, you know, going to be in acute care.

    Dr. Jennifer 6:23

    So a neuropsychologist may come in and do a bedside evaluation that is very brief. And what the purpose of that is just to get kind of a baseline poststroke level of cognitive functioning, so we can see where your strengths and weaknesses are, which will then allow us to track you over time.

    Dr. Jennifer 6:42

    So you’re going to have a lot of what we call spontaneous recovery after stroke, where your body’s doing the recovery itself, regardless of what other people are doing. After that acute phase, or your body’s going through that spontaneous recovery, we want to do another evaluation.

    Dr. Jennifer 7:00

    That evaluation is going to tell us how much you’ve improved over time, and perhaps, where you’re going to be for a little while. And a good neuropsychologist should then provide a number of recommendations. So early on, you know, which providers to go to, is it a speech pathologist and OT, PT, another neurologist? any other kind of clinical psychologists, psychiatrists, and then give recommendations as to what those providers should be doing with you.

    Bill 7:34

    The neuropsychological assessment, how does that occur? So give us a bit of an understanding of what what that’s like for a patient?

    Dr. Jennifer 7:43

    Right. So the first appointment you’ll have sometimes it’s the same day as the full evaluation, sometimes it’s a day or two before, but you start with a lengthy interview. So the neuropsychologist is going to ask you a number of questions about your medical history, your psychiatric history, they’re going to talk about your education, your occupation, developmental milestones.

    Dr. Jennifer 8:11

    When you learn to talk and walk, even if your birth was a normal, healthy birth. And all of this gives the neuropsychologist information as to whether how you’re performing is due to your stroke, or is it also due to a history of learning disability, or maybe substance abuse or depression experienced as an adolescent, it all impacts how your current function is.

    Dr. Jennifer 8:39

    So that initial interview is really important. And we’re going to go over your symptoms and what your current complaints are, how it’s a functioning your day to day life, how it’s a functioning relationships.

    Dr. Jennifer 8:52

    So that interview can be anywhere from one to two hours, it’s pretty long. And then after that interview, the neuropsychologist should have a good idea of what needs to be tested. Right are your main concerns about memory, short term memory, is it more about attention and concentration? Is it a combination?

    Dr. Jennifer 9:13

    And from those concerns, we can then create what we call a battery, which is a number of different tests to actually test how you’re doing in those what we call cognitive domains. Compared to other people of at least your age, we try to compare to education, gender, and sometimes ethnicity.

    Dr. Jennifer 9:35

    So you have that one to two hour interview, then you could have a battery of tests that may run two to six hours, sometimes that can be broken up. And then the neuro psychologist takes all that information, compares you to other people, and then interprets that data and writes a report.

    Dr. Jennifer 9:55

    That report is generally pretty long. That report is often given to the Patients, neurologists, primary care provider, whomever else is working with the patient. And then a neuro psychologist will write a list of recommendations, what would help this patient continue in recovery to get the most out of treatment.

    Bill 10:17

    I feel like this is the most underutilized service and part of stroke recovery, because what you just described to me, it’s like when I’m buying a car any analogy I can come up with, and I don’t know who the car belonged to before the current owner. A

    Bill 10:34

    nd there’s a number of issues with that, again, because I’m not a mechanic, I don’t know about it. So what I do is I take it to a motor mechanic and I say to him, or her, I say, you know, tell me what’s wrong with the car. And then what they do is they give me a complete list of what’s wrong with the car.

    Bill 10:50

    And then they tell me roughly what they need to do to fix it, how much that will cost, and I can determine whether or not that car is worth purchasing. And then I can also go through the process of understanding what it’s going to cost to get it roadworthy. So it’s able to be safely driven.

    Bill 11:06

    And I feel like that’s something that we do on a daily basis, around the globe, when we are purchasing a vehicle if we’re purchasing the right kind of way. And we don’t give it a second thought, and we invest in that car so that when we buy it, we don’t buy a lemon, or continue to drive something that is costing us money, because it’s running too rich or whatever.

    Bill 11:28

    And yet, when I was in, in my rehabilitation phase, there was no person like you sitting in the middle of my group or my team that was telling them what my issues were and how they can support me. So when I went to physical therapy, they assessed me for about, I’d say, for about three or four hours over two days.

    Bill 11:53

    And basically, they could see that I couldn’t walk, and they could see that I couldn’t use my hand. And they could say that I had some balance issues. But they didn’t dive into the cognition side of it, which for me, may have been a big issue, I may not have understood that I couldn’t walk, talk, whatever.

    Bill 12:11

    And I might not have been able to join the dots of how therapy needs to go, and what’s going to be best supporting me in therapy. And I try and tell people that what one of the most important things I need to do is send you’re a psychologist for that report on how they’re currently doing. And then they can take the report to be to advise the rest of the team. Does that make sense is that how you see yourself as being involved in the recovery of somebody who’s got a brain injury?

    Multi-disciplinary team – Dr. Jennifer Sumner

    Dr. Jennifer 12:46

    Definitely, I think that the best use of neuropsychology is in a multi-disciplinary team, where you have a number of different specialists so that you talk to each other. because like you said, if you’re going to go to physical therapy, and your PT gives you exercises to perform.

    Dr. Jennifer 13:04

    If your PT doesn’t know that you have a hard time with something called working memory, your ability to hold several pieces of information in your brain at once, and then manipulate it. If they don’t know that, they’re not going to know that they need to break down the steps of exercises for you in a certain way, they’re not going to know that maybe your processing speed is a little slower.

    Dr. Jennifer 13:30

    So having that key information is going to help the PT tailor their work. Not that I know anything about physical therapy, but I know how your brains going to take in their directions. So absolutely, I think it’s essential to have really the best outcome possible.

    Bill 13:49

    That makes complete sense to me. Because when I speak to stroke survivors from all around the world, but even people at home, you know, family people that are related to us, though, they’ll tell me that their loved ones not motivated, or they’re being lazy, or whatever, and there is far from unmotivated, or lazy people before the stroke.

    Bill 14:09

    And there’s not an understanding that the reason that they are exhibiting these types of behaviors is related to the injury in their head. And it could be a fatigue issue. It could be a cognitive issue. It could be all sorts of issues. And they just, they do the best that they can and they just label it really quickly.

    Bill 14:31

    And what I find that does is that frustrates caregivers and it frustrates family members and friends and all those types of people. It certainly frustrates the stroke survivor. But then it’s the excuse that physical therapists and occupational therapists use to get somebody out of their system so that they can make a way for the next person.

    Bill 14:55

    And I feel like that’s such a shame. That is so terrible that That’s happening because they are supposed to be supporting this person in their recovery. And what they’re doing is they lack the depth of understanding that’s required to actually properly assess that person and give them the type of therapy that they need.

    Bill 15:18

    And perhaps PT is not the only therapy that they need at the moment. And they also lack the ability to say, hang on a sec, I think we need to call a neuro psych, to get them involved in our discussion. So we can understand why this person is not progressing further, rather than just kicking them out of the system and making it the caregivers responsibility.

    Dr. Jennifer 15:40

    Yeah, a key component to neuro Psychological Services is education, educating the patient, educating the caregiver, and educating the providers. In an ideal world, educating the community. So that one, the patient and caregiver can be advocates for their own treatment, because knowledge is power.

    Dr. Jennifer 16:01

    And if you don’t have the knowledge, or you don’t know the right course of treatment, or even the right questions to ask, you’re going to get moved out of systems and you’re not going to get the help you need. So if you can have a neuropsychologist to provide that education, give you direction, and then hopefully track your progress. Like I said before, you’re gonna have a much better outcome.

    Bill 16:23

    How do neuropsychologist usually get involved in that conversation? How do people come across you? So I stumbled across my neuropsychologist, because somebody else told me but how does it normally happen, at least in the States?

    Dr. Jennifer 16:39

    Well, it definitely depends on the type of insurance you have, and where you live. If somebody’s in the United States, if someone’s in a managed care organization, they’re going to see probably their neurologist, or whatever rehab doctor, they have an acute care.

    Dr. Jennifer 17:02

    And they may provide a referral to either a neuropsychologist that’s in house on the team, or they may just refer you to outpatient neuro psychology. If that happens, then there might be someone in your network that you have to go to.

    Dr. Jennifer 17:18

    But like you said before, if there isn’t someone in your network, if you don’t belong to managed care, then you can find a private-practice neuropsychologist, where they have their own clinic, they operate their own services. Now some of those will be covered by insurance.

    Dr. Jennifer 17:36

    Some of those you will have to pay for on your own we call it cash pay or fee for service. It depends again, on where you live, what you’re looking for. The cost of that can range depending on the complexity of your case, what kind of services or the extent of the services you need.

    Dr. Jennifer 17:58

    But I tell everyone across the board, one, check with your insurance, if they’re not helpful at all. Google, go online, type in neuro psychologist and the name of your city and see what comes up. Talk to that person, if they can’t provide you with what you need, then they should have suggestions as to where you can get that help what other neuro psychologists may serve you.

    Bill 18:23

    A little earlier, we spoke about, you mentioned multiple stages where you check in with the person at the very early phase of their recovery, and then later on to see how far they’re progressing and what we need to focus on. So how often do you like to see somebody and assess their progression in their recovery?

    Dr. Jennifer 18:44

    If I see someone at the acute stage, let’s say a neuropsychologist is working in the hospital, they will probably see them, once someone is able to engage with the neuropsychologist.

    Dr. Jennifer 18:59

    So depending on the severity of the stroke, it may take a week, it may take a few weeks, it may take a month. If someone has aphasia, and they’re not able to speak, then it may take a little longer or there may be different tests utilized. So that’s in the acute setting. In general, a neuropsychologist will assess once again before a patient is discharged and goes out to outpatient services.

    Dr. Jennifer 19:27

    Now, like I said before, there’s a lot of spontaneous recovery. And you guys are seeing a ton of different providers at once it gets kind of crazy. So in general, people do not have a follow up neuropsychological evaluation for at least six to 12 months later. So that’s just the follow up evaluation.

    Dr. Jennifer 19:49

    But in terms of tracking, it depends on what type of neuro psychologist you see. So some patients will go to an outpatient provider do one assessment, get recommend emendations and never see that neuropsychologist again. Others will see a neuropsychologist in a hospital setting where they track the patient as they come in for follow up services with other providers.

    Dr. Jennifer 20:13

    Some people see a neuro psychologist who also offers cognitive training or cognitive rehabilitation. That’s something I do, where I’m seeing a patient every week, maybe twice a week. And I’ll do periodic assessments every three months, brief tests that look at your progress. Then, as I’m seeing you every week, I’m also checking in with how you’re doing, how your other services are going. And then performing cognitive rehab.

    Tracking progress and tailoring support


    Bill 20:46
    A lot of stroke survivors that I speak to will do the whole. I haven’t done anything, I haven’t been able to recover or achieve anything or do this or not speaking properly at all this and that. How important is it to remind them of how far they’ve come? Is this some kind of a process where you can show them the, this is where we started and look where we are now?

    Dr. Jennifer 21:12

    Absolutely. So anytime you have that baseline neuropsych assessment, and you have any follow up testing, you always put in the progress, like I usually create a graph, or I will compare their scores to previous scores so they can actually visually look at it, and we can talk about it. I think conversation is really key. Because in the beginning, I feel like a lot of stroke survivors are told, look you’re gonna get your most improvement in the first 90 days, and then maybe you’ll get some slow progression.

    Intro 21:48

    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?

    Intro 22:05

    And doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called the seven questions to ask your doctor about your stroke.

    Intro 22:32

    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.

    Dr. Jennifer 22:51

    And I think that’s like shooting a patient in the foot. What’s that going to do for their progress to tell them it’s going to be stunted after a while because one research shows us that that’s not necessarily true. So communicating the positive gains, and then the fact that okay, well, maybe this isn’t going in the direction you want. So let’s tweak it a little bit so that you can get where you want.

    Dr. Jennifer 23:14

    And there are always things you can do to compensate for something that you’re struggling with modify something if it’s not working. I’m a big believer in continual improvement, right? People that don’t have strokes are constantly improving. Why would somebody that’s had a stroke, not do the same thing. It doesn’t make any sense.

    Bill 23:35

    It doesn’t make any sense. But it’s such a terrible thing that continues to happen. And people tell me all the time, and it is that golden time, you know, it’s that three month period where if the person hasn’t made certain improvements, if they appear lazy or unmotivated.

    Bill 23:53

    And if they do all these things, it’s like kick them out, instead of actually having them supported then and there. I think it’s really the wrong time. My opinion about it all. Just an opinion, it’s my thought is that there needs to be less done in that early phase where people are spontaneously recovering, and more than later, because that’s when people really feel the gap in the health care and in the support, that’s when they really need it.

    Bill 24:20

    And in the spontaneous recovery, if we can just focus on getting people on their feet using their arms and legs, the you know, the physical side of it, I think that’s gonna help a lot because we know that physical movement and exercise supports brain health and brain recovery.

    Bill 24:38

    So I kind of see it as a now that we’ve put some time and effort into that. Now let’s do some of this. I was spending three or four hours a week at outpatient rehab after my inpatient rehab, which was a month, which meant that those three or four hours at actually the rehabilitation facility meant that I had to spend an hour getting there and an hour getting home.

    Bill 25:04

    So that was three or four days a week, that’s my entire week gone and I can’t put any time or effort into any other thing that I need to put into, especially when I’m dealing with fatigue. And I’m dealing with all the other things that stroke creates.

    Bill 25:17

    So I think it’s definitely time for the the community of doctors working with stroke survivors to re-look at their supposed standards of support and health of a stroke survivor, because there’s too much being done. And it’s easy for somebody to get in feel unmotivated, when they have completely and totally physically and mentally exhausted because they’re dealing with a brain injury that they have to recover from, as well as supposed to get all these appointments.

    Bill 25:56

    I was writing my appointments in my calendar, I was getting two or three reminders before that. And I still wouldn’t occur to me that I had an appointment that day, in half an hour or in an hour. And I’d often get a phone call. People say to me, you come into the appointment today and I was like, which one’s? The physical therapy appointment?

    Bill 26:18

    And I thought, Oh, okay. Yeah, I did get the reminders. But Sorry, it did not occur to me that that reminder was for an appointment right now. I’m not sure about what your thoughts are on that. And if you have a comment or can comment, but I think that it’s time to reevaluate and reassess the way that acute care is given to stroke survivors.

    Dr. Jennifer 26:42

    It’s a complicated system, depending on where you get the care. Some facilities are far better than others. But I think the majority of them, like you said, Do not streamline care in a way that works for patients. It’s too overwhelming. It’s too stressful. It’s exhausting. And it’s complicated.

    Dr. Jennifer 27:05

    So spending those first few months, like you said, capitalizing on that spontaneous recovery is important. I think there is benefit to introducing some type of rehabilitation early on in a careful, systematic, supported way. But I think focusing on lifestyle management is the most important thing you can do in the beginning.

    Dr. Jennifer 27:33

    Encouraging nutrition that’s going to help you recover, getting the sleep that you need to recover, introducing an exercise regimen that will work for you creating a social support system, those types of rehab tools are going to build the foundation for later recovery, and more cognitive, physical, emotional improvement.

    Dr. Jennifer 27:59

    And then like you said, there needs to be a transition period where you’re not just like dropped on your face. I mean, how many patients leave acute care, and then all of a sudden, you’re isolated, lonely, confused, you have no help anymore, it feels like people have forgotten you.

    Dr. Jennifer 28:18

    And so there needs to be a transition piece. And I hope I mean, I’ve worked in centers where the neuropsychologist and other care providers not only work in the acute stage, but they have created an outpatient system within the center. So there’s a little bit more of a step wise, or a step down approach. And then after outpatient care, it’s long term care. So definitely it needs to be adjusted.

    Bill 28:48

    Yeah, we kind of got sparked by your Instagram, and on Instagram, you’re at Dr. Jennifer Sumner. Yep. And I’ll have the links to that. So anybody who wants to reach out or have a bit of a follow they can do that. One of the what you have all your posts are really cool because they’re all associated to what supports recovery and what supports brain health.

    Bill 29:14

    And one of those things was brain food. And I like this saying that one of my mentors/coaches somebody who I follow says and his is garbage in, garbage out. So with regards to food, there is a very complex idea of what’s healthy depending on who’s selling it and you know, where you pick up that product from.

    Bill 29:43

    But what are some of the brain foods that people can use that support recovery because I love that this is coming from you a neuropsychologist because I think again, that’s missing from the field of psychology and neuropsychology and even psychiatry, this comment session is missing this part of the recovery is often glossed over.

    Food for brain-health


    Bill 30:04
    And especially in psychiatry. It’s just about prescribing, you know, pills and medication, amongst other things. I’m being a little bit cynical, I know. But that’s my experience. Tell me some more what are some of the foods that support brain health and recovery in those early days?

    Dr. Jennifer 30:22

    So a lot of the information about food and brain health comes from studies about neurodegenerative disease like dementia. Now, obviously, stroke and dementia are two very different neurological injuries or diseases. However, the brain benefits similarly from the foods you would prescribe, I guess.

    Dr. Jennifer 30:45

    So one of the common diets suggested is the Mediterranean diet. The Mediterranean diet is rich in fatty oils. So really fatty fish, fatty nuts, any type of like avocados or rich vegetables, a colorful array of fruits and vegetables. I mentioned the fatty substances, because some part of your brain is made up of fat, we call it myelin. And this fat wraps around your neurons.

    Dr. Jennifer 31:20

    And what it does is speeds up the messages between neurons. So the information you bring in gets sent to other neurons more quickly, you process that information more efficiently, and then you can get it back out. So increasing those healthy fats can be beneficial.

    Dr. Jennifer 31:41

    Also, you want to have whole grain foods, I get frustrated with people that want to go on fad diets or feel like they need to get rid of carbs and just focus on proteins and fats, because what we know is our brain needs carbohydrates, we need the glucose and carbohydrates because our brain functions off of glucose. So you want to make sure those carbohydrates are all whole whole grain based, I’m sorry.

    Bill 32:10

    So that means less processed, and it’s less likely to be like a very fine, powdery substance like a flour.

    Dr. Jennifer 32:17

    Right exactly. The more unprocessed your food, the better.

    Bill 32:25

    Yeah. I certainly noticed that when I changed my diet after the stroke, from healthy to actually healthy. There was a big difference in my fatigue, and how it decreased the level of fatigue, one of the things that I used to consume a lot of was bread, and usually white floury bread with no whole grains in it.

    Bill 32:50

    And the purpose I used to consume that was because I always did. And it always was something that I ate to fill one of those little hunger holes that you have through the day. But what was happening was I would experience this potentially, say, a hungry period, I would have some of that I’d have a really massive crash of energy.

    Bill 33:12

    And of course, I couldn’t, at the beginning associate that I didn’t know to associate that with increasing the level of my fatigue and decreasing my fatigue. So it and nobody that I dealt with none of my doctors, none of my counselors or my psychologists, none of my neuropsychologists and I don’t expect everybody to know everything, right?

    Bill 33:35

    But nobody sort of suggested that perhaps that deficit or part of that deficit is being contributed to by the food that you might be eating. So I was still drinking soda. I was still drinking or having sugary cakes and meals like that, all in moderation, but perhaps in moderation two or three times a day.

    Bill 33:57

    And they were all causing this cascade of a massive energy spike and then a massive energy drop off and I was eating pasta a lot, you know with every every second meal was based around one of those highly processed foods. And then what I found was I took out those highly processed foods and what I did they actually paid attention to perhaps what was happening to me one or two hours later.

    Bill 34:25

    And then I really knew that those foods were not for me. So there seems to be a lot of discussion in the stroke community around low carb meals, but low carb meals of that type not like a bigger pattern, high carbohydrate meals of that type low carbohydrate meals and vegetables. And like you said whole grains and other types.

    Dr. Jennifer 34:52

    If anybody says low carb it should be low refined carbs, but high complex carbs and those complex cards cards. Are those whole grains. And I think another important thing to note is that many people that have neurological illness or injury often experienced some type of maybe depression or anxiety because it is a huge life adjustment.

    Dr. Jennifer 35:16

    And food will not only help your cognitive skills, but it’ll also help your mood. And so it kills two birds with one stone if you can make, and I’m not saying a complete overhaul that’s hard for a lot of people that are just trying to get up every day. Start with one thing, maybe add fish once a week, maybe avoid that sugary snack for one meal, make small adjustments and then grow incrementally, it will make a huge difference cognitively, emotionally, and then behaviorally.

    Bill 35:51

    Yeah, because food is responsible also for supporting neurotransmitters like dopamine and serotonin. And if you supporting those types of neurotransmitters, you’re less likely to feel so quote unquote, depressed or anxious, you’re more likely to feel calm and level and relaxed.

    Bill 36:12

    Even if you’re contemplating the serious challenges that stroke has caused, and what your future might look like. You might be able to feel a little bit anxious in that moment when you’re thinking about that. But you shouldn’t be feeling anxious, ongoing, and forever in a day, it should be a very common and useful experience of an emotion. And at some point, it should dissipate and go away.

    Bill 36:41

    So I love that you said that about food and how it supports balance in your in regulating your emotions, it really does, I found that myself and I have bad days. One of the challenges with this podcast is that I’m 150 episodes in this is going to be 151. And I’ve been on my recovery path since 2012.

    Bill 37:04

    And people see me and the way that I come across, and they make the assumption that wow, look at this guy, he had a stroke, look at him, I need to be like him, it’s taken me a long time to get here. And I’ve adjusted a lot of things. And one of those things that I did was food. And I did it very, very slowly.

    Bill 37:22

    You know, the first thing I stopped was taking alcohol. The next thing was refined sugars, no sweets, no lollies, no cakes, none of that stuff, which meant that a lot of the time I cut out a lot of the refined flour, because they’ll combine you know sugary cakes and beautiful meals like that.

    Bill 37:42

    And then slowly, I noticed how caffeine was impacting me, and what a difference that was making to my mood, and how it would make my heart race which increased my anxiety, which made me and at the beginning, I didn’t combine the two, I didn’t understand that they increase the caffeine.

    Bill 38:01

    And making my heart race wasn’t actually my thoughts and my concern about the future. It was this other thing that was impacting my thoughts in the future. So I love that you. You’re focusing on more than just getting people and assessing them and then setting them off and then expecting them in the most difficult time in their life to just do this all on their own. It’s such a difficult challenge.

    Teaching others


    Bill 38:31
    What are your other posts I really loved was you just call the brain health basics. And you say some things in here which really are stunning to read, but they make sense. And they’re stunning because they are so simple. One of them is to teach something to somebody else. How does that supporting brain health?

    Dr. Jennifer 38:54

    When you are teaching information to someone else, you’re using a number of sensory modalities at the same time, right, you’re speaking aloud. So you’re going to hear it you’re using verbal skills, you’re awfully often using visual aids. So you’re also using visual modalities.

    Dr. Jennifer 39:11

    But above and beyond that, when you’re teaching somebody something else, it’s creating repetition. And it’s consolidating that information. So what we know with through different research studies is that if you can repeat and teach it, consolidate is a hard word for for some people, but it will bring that information in and make it stick.

    Dr. Jennifer 39:37

    So that when you go to recall it later, it’s easier and you have reference right you can remember where you were, who you were talking to what the situation was. And when you can add another component to memory, you’re more likely to be successful and recalling the information.

    Bill 39:57

    I love that one of my mentors used to ring me from time to time. And he’d say to me, can I speak to you for an hour, I just learned something new. And I wanted to tell somebody about it.

    Dr. Jennifer 40:08

    That’s awesome.

    Bill 40:09

    And I used to learn something new that was probably not relevant to my life. But it was really lovely to connect with him. And then I would learn from him, but he would learn. And and he did make a point of explaining that to me that he was actually doing that, so that he can store the memory and have it, I suppose more more cemented to that part of him that needed to recall it at a later stage.

    Bill 40:34

    And I found that myself, if you want to learn something really deeply is teach it to others. You know, when you get up onto a stage, and you try and teach somebody, something that you learned, you start to deeply integrate it into your memory and into your being. And then. And then after time, after you do it many, many times, it just becomes second nature, you don’t even have to think about the process of your conversation, it just comes.

    Dr. Jennifer 41:01

    Right. A lot of times when we learn information, we may learn like the surface of the information, it only goes so deep. But if you’re teaching someone, you become more analytical, you take a deeper dive, and so it’s going to consolidate better.

    Bill 41:18

    Yeah, and by becoming more analytical, you’re bringing in other experiences from your life. And you’re relaying them in this particular application. And you’re creating this much wider and broader foundation for that information to hang around that it’s more relevant than just in this one instance, where I’m telling somebody about it.

    Dr. Jennifer 41:39

    Well, and another cool trick that I teach in cognitive rehabilitation is that in order to remember information more efficiently, you want to link it to something else. So if you have to remember an item linked to an experience, link it to something you’ve seen, link it to a story.

    Dr. Jennifer 41:56

    And so when you teach, you automatically link what you’re teaching to something else, right, if you’re going to share an anecdote if you’re going to show a picture, so you’re already using one of the memory strategies, that, you know, I would teach in a cognitive rehab session, so you’re just adding more and more skills to memory recall.

    Bill 42:19

    Yeah, brilliant. I also was told, when I was in my darkest days, I was told to laugh and to watch funny videos or funny shows or things that made me laugh, and you have got here, laughter increases dopamine and reduces stress hormones. Both are great for brain health.

    Bill 42:40

    And I think there’s a lot to be depressed about at the moment. And as well, as well, when you’re experiencing a stroke, and all the rubbish that goes along with that. And here’s a really simple way to shift all of that junk. And to make a massive difference to your health and well being tell me how does laughter support the brain to heal.

    Dr. Jennifer 43:04

    So, when we are feeling stressed, we have an increase of cortisol in the brain, that’s a stress hormone. And a little bit of cortisol is good. You mentioned before, like a little bit of anxiety is helpful, we need a little bit of anxiety, it will either teach us to, you know, leave a situation, that’s bad, fight through a situation that’s hard, or sometimes it stops us in our tracks.

    Dr. Jennifer 43:29

    And that’s okay in the short term, but if we’re experiencing chronic anxiety, chronic stress, that level of cortisol becomes toxic to the brain. And we know that that can actually lead to some atrophy and an area of the brain called the hippocampus, which is largely responsible for memory.

    Dr. Jennifer 43:50

    So if you are chronically stressed, it’s going to interfere with how your brain functions and more specifically with memory. So we want to reduce that stress, stress reduction is really key to recovery. And like you said, one of the ways we do that is through laughter. So laughter is going to reduce that stress hormone.

    Dr. Jennifer 44:10

    And it’s also going to increase a really nice neurotransmitter called dopamine, dopamine, that feel good neurotransmitter. And the more we can have that, the healthier our brain will be to process information, manage stress, increase memory, increase attention, things like that.

    Bill 44:32

    Yeah. I think part of feeling depressed has also got to do with our behavior and our habits. And there’s no doubt about it, that depression is a thing. It’s real, and I acknowledge the people that are experiencing that. But habits and behavior tend to be something that supports depression, potentially, and also the antidote to depression or part of the antidote to depression.

    Bill 44:56

    It’s a very complex thing. So that’s why I love that part of supporting yourself with laughter really makes a massive difference. And the more you laugh, and the more you create those dopamine neurotransmitters by laughing, the easier it is for you to make those neurotransmitters and continue to laugh.

    Bill 45:18

    And, and as a result of that, the less likely you’re going to be in a depressed state all the time. If you’re switching in and out of feeling slightly depressed from time to time, and then having wonderful laughing episodes, that’s a good sign that you’re not potentially going to be always stuck in the depressed state that you can shift yourself out of there.

    Bill 45:41

    And what I like to say is, if you focus on the solution, rather than the problem, you’ll get more of the solution rather than more of the problem. And I think it’s kind of a, it’s pushing the needle towards the solution as much as possible. And then decreasing. The amount of the problem is that way, by focusing simply on that thing that gets you more of the result that you want.

    Dr. Jennifer 46:05

    Well, I think it can also be preventative in nature. I mean, a lot of times we’ll try these tools once we’re already feeling down or stress. But if we’re not there yet, adding laughter to our life can be a good way to keep it up. Keep it away. So even if you’re feeling okay, introduce some laughter into your life, right? YouTube, your favorite comedian, read some of your favorite comics, do things that will keep you feeling a little bit better every day?

    Bill 46:35

    Yeah. Beautiful so simple, cost effective, really amazingly beneficial and helpful. One of the other things that stroke survivors do is they push, so they want to get back to what life was before stroke, they push, they push, they push, they push, they try and fit as much as I can into their day.

    Bill 46:59

    And then they have a crash. And then they struggle to overcome that, that makes them feel unwell, have negative thoughts, etc. And they forget to take breaks. And one of the things that you list on your tips is brain health basics, take short breaks, 10 minutes, every hour, three minutes, every 30 minutes, reduces fatigue increases energy reduces stress decreases errors.

    Bill 47:24

    I mean, it’s such a simple thing. It’s so common, yet there’s a guilt associated to taking breaks and not being productive, and even having a sleep during the day. Do you come across that with your comments?

    Giving yourself a break – Dr. Jennifer Sumner

    Dr. Jennifer 47:40

    All the time, I was just gonna say people don’t give themselves permission to rest. I don’t know how it has become so ingrained in our global culture to just keep going at the detriment of our health, right? I mean, heart diseases on the rise, cancer is on the rise. And so much of this is because we experienced constant stress, and we don’t allow ourselves to rest and rejuvenate.

    Dr. Jennifer 48:06

    We get tired, because we over exert ourselves, then we can help to prevent that fatigue. by just taking short breaks, it’s not a lot. It’s not too much, after sitting in front of a computer for 30 minutes to just stand and do a stretch, look away, go get a drink of water, go to the bathroom, simple things, come back and do what you need to do. Again, we all need to do it not just stroke survivors, all of us need to integrate this type of behavior in our day to day functioning.

    Bill 48:38

    It’s so true I, I do talk about stroke survivors a lot. So therefore sometimes I forget that these skills, actually supportive of the caregiver, for example, who has to deal with this new, new challenge in their life and they’re not skilled to do they don’t have any qualifications.

    Bill 48:57

    And all of a sudden, they’re a caregiver of somebody with a neurological condition. I mean, it’s potentially ridiculous. One of the other things that you’ve got on here is brain health basics is his deck to help decrease error to help simplify your life and to end things and to support using less energy is to establish a routine now I really love that.

    Bill 49:25

    Because my routine used to be wake up in the morning, leave pretty much as quickly as I could put my clothes on, go straight to work, work all day, every day, and then come home, get stuck into preparing a meal because I was the first one home and then sit on the computer and do work to support the day’s tasks to pay the bills to pay my my contract is all those things.

    Bill 49:50

    And there was very little time for me and the only way that I could get time for myself was if by some miracle, there was nothing for me to do during the The day which never happened. So I was always struggling for time. And I didn’t realize I was in a routine that wasn’t supporting my health and well being. Yeah, since the stroke, my returns changed a fair bit.

    Bill 50:13

    So I’m more productive in the morning. But by the afternoon, I might not be productive at all. So by about maybe 1:30pm, or 2pm, I’m done. And I’m really noticing myself fade off. And I’m not helpful as useful to anybody. So I get out of there. And that’s my new routine.

    Bill 50:31

    Now I come home and give myself two or three hours break before everybody gets home after work and school. And then I can support myself to be better version of myself after that to prepare a meal and do all those things. So routine, is something that many of us don’t have, I feel like most of our lives tend to be very ad hoc. How do you find your clients dealing with the lack of routine?

    Dr. Jennifer 50:58

    Well, I think that a lot of people end up reacting, like you said, we don’t necessarily plan and create healthy routines, a lot of our life is spent on kind of a spontaneous reaction to what’s presented to us. And then you would have spending all day reacting and not doing what you would want it to do in the beginning.

    Dr. Jennifer 51:20

    So the differentiation between choosing to act versus reacting, and secondly, picking healthy routines versus unhealthy routines. So creating a positive outlet during the day, if you’re going to create a routine for that one set aside a time, if you decide that you’re going to exercise everyday, maybe you’re going to go for a walk, give yourself 15 minutes, 30 minutes, whatever you can, and say I’m going to do that at 7am, every morning, rain or shine, before after breakfast, what I need to do.

    Dr. Jennifer 51:53

    To make that more of a routine, you’re going to set out your sneakers, your shorts, your T shirt at night, before you get up in the morning, you’re going to set your alarm for the same time, maybe you have a water bottle on your counter every morning, you’re going to introduce things that will keep that routine going and solidify that habit.

    Dr. Jennifer 52:14

    So you want to support that routine, by you know, putting the water bottle out putting your sneakers out, maybe you’re walking the dogs, you put the leash on the counter, whatever you need to do to support that healthy habit.

    Bill 52:27

    Yeah, I love the idea of that one of our close friends had a brain aneurysm when she was 20 or 21. And it burst and she’s now 46, or 47 says quite a few years between that incident and where she is now. And one of her routines is to support her memory in the morning, she has to make a list at night.

    Bill 52:49

    And she has to write it down and put it next to her bed so that when she wakes up in the morning, she has it. So she has some kind of a challenge with memory. Overnight, it seems to be a little bit of a gap there for her. So she still does that. And it’s so many years later, but it actually supported they she could tell me that she does that she could tell me about that routine.

    Bill 53:11

    But she can’t yet get to that point where she doesn’t have to run that routine. So they are really useful. And I think that’s how you fit in the things into your day that you love. I think by me having a routine where, for example, if it’s yoga that I love to do, whether I’m doing it outside of my house, or via YouTube and watching a yoga video.

    Bill 53:36

    Maybe that’s a really good way to introduce it and find more time for myself. And no matter what you don’t interrupt my routine, I don’t respond to your, your ad hoc requests for something until I go through my routine and achieve the things that I need to achieve. Everybody can wait a little longer let’s face it.

    Dr. Jennifer 53:56

    Right. And when you’re establishing a routine, I think it’s really important to give yourself room to experiment. Because sometimes we think, Okay, this is what I’m going to do. And this is how I’m going to make it happen. And then it doesn’t work and we give it up.

    Dr. Jennifer 54:11

    So give yourself a few different ways to try the routine out. And if you need to adjust it be flexible enough to adjust it. You just want to get to a place eventually, hopefully within maybe a week of experimentation, where you can solidify the routine. But don’t just try one avenue, and then trash the idea. Give it some time.

    Bill 54:35

    Yeah, I completely agree with you. Now, a lot of my challenges with dealing with the doctors and the people that are involved in stroke recovery is that and this is a great thing Don’t get me wrong is that they’ve never had a stroke and they don’t really understand and I completely wish they never do have a stroke.

    Bill 54:55

    But it’s a little bit of a interesting thing when you come across a health professional That has had a serious issue. And they kind of get you. Now I know you’ve had your own health scare, and how have has your your training in the fields that you’ve dealt with helped you get through that? Did you feel comfortable to chat about that for a little bit?

    Dr. Jennifer 55:19

    Yeah, absolutely. So I was diagnosed with breast cancer last September, I went through chemotherapy for about four and a half months, I had surgery. And then I did radiation for about two months, and I finished treatment mid May. So I’m in complete remission now. But there is ongoing treatment, I still have things I need to do and I’ll have to do for a number of years.

    Dr. Jennifer 55:47

    But like you said, going through experiences like that, help you get it, right, you get the just endless doctor’s appointment, the waiting, the confusion in communication, different providers telling you different things, the pain, the slower recovery.

    Dr. Jennifer 56:12

    And something I experienced that I’ve started to talk about more is this chemo brain where you have this brain fog. And I definitely experienced moments where I just would break down into tears, because I just thought, what, why isn’t my brain working? And how come there’s, like, it fell out of my control.

    Dr. Jennifer 56:33

    And so thankfully, I had this skill set that I have used with many of my patients where I thought, Okay, well, I need to start applying the same tools that I’ve been teaching other people. And they really saved me this year. I have for young children, I have my work, I have some volunteer service, I had my healthcare, so it was hard to try to juggle everything.

    Dr. Jennifer 56:57

    And so I introduced a lot of my planning and organization techniques, I utilized a lot of short term memory strategies, I focused on some different concentration tools. And all of that helped me everyday to move forward, I think fully have made great progress and improvement.

    Dr. Jennifer 57:22

    But I still use those tools. I think that it will help me continue to get back to where I was, if I don’t stop. And even someone that was healthier before I utilized some of these tools, because I saw how helpful they were. But now I’m using them in a way that just feels so like, integrated into my life. It’s my scaffolding, right. It’s, I’m the building and it’s what’s keeping me going and staying healthy and living in a in a structured way that works for me.

    Bill 57:57

    Yeah, beautiful. I wanted to mention that because I think it’s really important for us to talk about all the things we’re talking about. And then sometimes you get that occasional person who says yeah, but what do you know, you’re not living my life, you’ve never been through what I’ve been through and they use that as an excuse to get out of taking the advice or applying a new learning or a new skill.

    Bill 58:19

    And I’m just here to say, to the people that might be thinking like that, that look, both of us have been in difficult situations, we’re talking about this stuff, because it has helped, it has made a difference. And it could help and it could make a difference to you. And most of what we’re discussed is cost effective, it doesn’t cost you anything to do.

    Bill 58:40

    It’s free. So consider it and consider changing one small thing right now rather than try to implement everything at the same time. Do the one thing that’s the easiest for you. And then then see how you go and reflect back, look back and see what has changed since you’ve implemented that something new what difference you’ve noticed whether it’s positive or negative, and then basically try again, do something else and see what else you get. It’s important for people to take responsibility I feel for their own recovery, as well as be supported by the medical professionals, you still need to take responsibility for your own recovery.

    Dr. Jennifer 59:19

    Right. And everybody does experience different things, right? We don’t exactly get what the next person gets, you know, I had a dear friend, one of my best friends that was going through breast cancer at the same time as me, but she had a different kind of cancer and was treated differently.

    Building a toolbox

    Dr. Jennifer 59:39

    And things that she did didn’t apply to me and things that I did didn’t apply to her. But having kind of a partner in communication, to just run things by and to see if maybe something she tried might work for me was really helpful. And so I think Whether you’ve had one kind of stroke or another, or you’re talking to someone that’s had a different health scare, you build a toolbox.

    Dr. Jennifer 1:00:08

    And you get as many tools in that toolbox as you can, you may never use a saw, you may never use a hammer, but you might need the nails, you might need the anvil. And so you have the toolbox in case you need it. And then you pick what you need at certain times. You don’t have to use everything, but you want to gather as much as you can.

    Bill 1:00:30

    I think that analogy that you’re talking about that toolbox is also how resilience is built. Because having a toolbox of different things that you can go to, at different experiences and different problems and different challenges in your life is what makes you resilient, it means that hang on a sec, I’ve done something in the past that actually might be applicable to this new challenge that I’ve never experienced before.

    Bill 1:00:54

    And instead of getting overwhelmed by each new challenge, you’ve got something that you can use to help you get through that new challenge, or at least start to tackle it, and then also get better at tackling it. I really love what you’re saying about the toolbox.

    Bill 1:01:09

    It feels to me like you’re talking about the foundation for resilience. Yeah, absolutely. And in that time, it’s okay to lose your shit. And in that time, it’s okay to feel unwell. And to be emotional, and to get cranky and to yell at people and to be rude and obnoxious. As long as you can be aware of it and apologize from time to time.

    Dr. Jennifer 1:01:30

    Scream that out from the roof, like give yourself permission to process what you’re going through. It’s crap, right? Like, give yourself a moment to feel your feelings. If you can be responsible with those feelings so that you don’t hurt others. And you can explain yourself afterwards.

    Dr. Jennifer 1:01:51

    I think that’s going to give you the chance to heal. If you bottle everything up, make excuses for other people, or don’t allow yourself to get frustrated or pissed off that it’s happening to you. That’s going to turn into another problem. Right? You want to feel your feels deal with it so that you can process it and move on.

    Bill 1:02:14

    Yeah, I love it. If somebody wants to reach out and connect with you, where would be the best place to go?

    Dr. Jennifer 1:02:22

    So probably my website, which is the clinic I work at that’s www.kaizenbraincenter.com. They can follow me on my Instagram which is Dr.JenniferSumner and really, if anybody has questions, feel free to email me. That’s [email protected].

    Dr. Jennifer 1:02:50

    I know how frustrating it is trying to get ahold of a provider and get their secretary or wait weeks, like shoot me an email if I’m busy. I’ll just respond and tell you to give me a couple of days. But I’m happy to answer any questions you can direct message me on Instagram as well.

    Bill 1:03:07

    I really appreciate your time. Taking an hour out of your busy schedule for children, full on business and all the other stuff that you’re doing. Dr. Jennifer Sumner, thank you so much for being on the podcast.

    Dr. Jennifer 1:03:20

    My pleasure. Thank you.

    Bill 1:03:22

    Well, thanks so much for joining me on today’s recovery after stroke podcast. Do you ever wish that there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years now, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:03:41

    This road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave the hospital you no longer have the medical professionals on tap.

    Bill 1:03:57

    I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker insight. If this sounds like you, I’m here to tell you that you’re not alone and there is a better way to navigate your recovery and build a fulfilling life that you love. I’ve created an inclusive, supportive and accessible community called recovery after stroke.

    Bill 1:04:19

    And this all in one support and resource program is designed to help you take your health into your own hands. This is your guidebook, through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety and more, to find out more and to join the community head to recoveryafterstroke.com See you next time.

    Intro 1:04:41

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this web.

    Intro 1:05:00

    All right any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:05:15

    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 1:05:36

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance.

    Intro 1:05:58

    Or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third party links from our website or follow that your own risk and we are not responsible for any information you find there.

    The post Neuropsychology In Stroke Recovery – Dr. Jennifer Sumner appeared first on Recovery After Stroke.

    1 hr 8 min

About Recovery After Stroke

From the publisher's feed

A Community And Podcast For Stroke Survivors And Carers

More shows like Recovery After Stroke

Hidden Brain by Hidden Brain, Shankar Vedantam

Hidden Brain

43,374 Listeners

The Daily by The New York Times

The Daily

111,764 Listeners

Up First from NPR by NPR

Up First from NPR

56,420 Listeners

Feel Better, Live More with Dr Rangan Chatterjee by Dr Rangan Chatterjee: GP & Author

Feel Better, Live More with Dr Rangan Chatterjee

3,608 Listeners

The Daily Show: Ears Edition by Comedy Central

The Daily Show: Ears Edition

14,173 Listeners

The Dr. Hyman Show by Dr. Mark Hyman

The Dr. Hyman Show

9,143 Listeners

The Peter Attia Drive by Peter Attia, MD

The Peter Attia Drive

7,929 Listeners

On Purpose with Jay Shetty by Perfect Strangers

On Purpose with Jay Shetty

27,844 Listeners

Huberman Lab by Scicomm Media

Huberman Lab

28,981 Listeners

ZOE Science & Nutrition by ZOE

ZOE Science & Nutrition

2,052 Listeners

The Martha Stewart Podcast by iHeartPodcasts

The Martha Stewart Podcast

488 Listeners

The Mel Robbins Podcast by Mel Robbins

The Mel Robbins Podcast

18,838 Listeners

Stronger After Stroke by Norton Neuroscience Comprehensive Stroke Center and Resource Center

Stronger After Stroke

5 Listeners

Good Hang with Amy Poehler by The Ringer

Good Hang with Amy Poehler

12,521 Listeners

Stroke Recovery Rehab by Blair Ames

Stroke Recovery Rehab

3 Listeners