Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • PFO And Stroke Recovery – Yvette Adams

    On the road to recovery after an Ischemic stroke which was caused by a Patent Foramen Ovale (PFO) Yvette Adams shares her stroke experience and her recovery 8 months from the date she ended up in the hospital.

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    Highlights:

    00:44 Introduction

    02:23 It’s Not A Stroke?
    09:24 Diagnosed With A PFO
    17:30 PFO And Stroke Recovery
    21:25 Time Management After A Stroke
    25:12 Emotional Lability
    31:50 Managing Multiple Businesses After A Stroke
    42:42 Sensory Overload And Fatigue
    51:24 Having A Long-Term View
    58:54 Stroke Support Groups
    1:09:29 Importance Of Sleep

    Transcription:

    Yvette Adams 0:00

    And then finally I had the neuro-psych assessment. I knew in myself that I was affected cognitively. But I didn’t know how to articulate it or what help I needed. So finally I had that test and then it’s a really long time to get the test back and explain it. And for me, it’s my working memory is impacted. I was telling you about my short-term memory because I literally couldn’t remember what I did yesterday, or where I parked car once I got driving again after a month, of course.

    Intro 0:31

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

    Introduction – Yvette Adams

    Bill Gasiamis 0:44

    This is Episode 231 of the recovery after stroke podcast, my guest today is Yvette Adams, who instinctively knew she was having a stroke, but was convinced out of it, not by one, but two medical professionals. To learn more about my guests and to get links to their social media and other relevant links, and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

    Bill Gasiamis 1:12

    If you’d like to support this podcast, the best way to do it is to leave the show a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice.

    Bill Gasiamis 1:35

    Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke.

    Bill Gasiamis 1:52

    Yvette Adams, welcome to the podcast.

    Yvette Adams 1:54

    Thanks for having me.

    Bill Gasiamis 1:56

    Thank you for being here under trying circumstances.

    Yvette Adams 2:00

    Yes, we all have them right.

    Bill Gasiamis 2:03

    While you were at the beach, and then you got distracted with a friend of yours chit-chatting about amazing stuff, probably. And then you got home and you’re locked out of the house.

    Yvette Adams 2:13

    That’s right, that’s how my morning started but I did do a 6k walk so that’s good.

    Bill Gasiamis 2:19

    Awesome, awesome. Tell me a little bit about what happened to you.

    It’s Not A Stroke?

    Yvette Adams 2:23

    In regards to the stroke, I presume you mean so it was this year in April 30. One of those dates we don’t forget, I was at a yoga class one on one. She’s actually a registered nurse. And it was right at the start of the class. And she went to hand me a small ball with spikes to put under my hip and roll it out.

    Yvette Adams 2:41

    And I just couldn’t take it or my coordination went. And the ball dropped to the ground. And I thought that’s weird. And then I went my arm feels really disconnected from my whole body. And I remember feeling all along here was pins and needles.

    Yvette Adams 2:56

    And then I must have looked funny because she said, are you okay? And I meant to go back and say I feel funny. But the words didn’t come out right, they were quite garbled. And then my vision went on the side. And then the headache started on the side.

    Yvette Adams 3:11

    And I thought something was wrong. But she’s a registered nurse. So actually even the next words I spoke did come out. I said you don’t think it’s a stroke do you? I actually thought to say that because we’ve had strokes and my family. And she said, can you do that and stick your tongue out? And I couldn’t and then she said can you raise both arms and I could.

    Yvette Adams 3:31

    She said it’s not a stroke then even though she’s a registered nurse, and I actually continued to do the rest of the class quite gently for an hour with a cracking headache and my vision not quite there. But just thinking must be like a bit of a faint episode or something.

    Yvette Adams 3:47

    Then I drove home, which isn’t very far but the vision in one eye was still not great. And I told my partner what had happened. And I said what do you reckon? What should I do? He said we’re going to the hospital. So thankfully he said that but to be honest, the hospital overlooked it too.

    Yvette Adams 4:03

    So I was there all day. They said maybe my brain my face was a bit droopy on one side, I slept a lot of it because the headache was just too bad. I wasn’t hungry. I felt sick all the signs of stroke but no one really took it as that took them till about 5pm that day to do a CT scan and they turned up nothing.

    Yvette Adams 4:24

    So they sent me home and said follow up with your GP. So that night I came home and was full of liquid from the CT scan rushed into the toilet, cracked my foot because my spatial awareness was completely out and actually broke my foot.

    Yvette Adams 4:39

    So stroke with a broken foot now still wasn’t recognized. Monday I rang the doctor diligently couldn’t get until Thursday. All that week felt pretty rubbish, irritable sight, just not myself, went to the doctor. He ordered an MRI and it was another 24 hours before we got the results of that.

    Yvette Adams 4:58

    He said you’ve had multiple strokes. So that was three almost points of failure, he nearly didn’t get the MRI. So we will, we won’t, but they did a CT scan already. And then he said straight to hospital. And yeah, then it was along all sorts of tests. And people, I think feeling a little bit embarrassed, they didn’t pick it up earlier.

    Bill Gasiamis 5:20

    I’m just sitting here, every time you say the next thing, I’m just thinking, Oh, my God, the next thing Oh, my God. Your instinct was to say it was a stroke, but then you go to the experts to get confirmation or help or support. And they tell you it’s not so you kind of have to go with them since you’re not a nurse or a doctor.

    Bill Gasiamis 5:39

    And it’s a really difficult thing. So are you going through these difficult physical times, like for that whole week? And are you thinking, Man, I should have done something more about this, or I still think this is a threat, like what are you thinking? What’s going on in your head? Even though they’re telling you it’s not.

    Yvette Adams 6:07

    Well, I am thinking, I feel really frustrated because I feel like something’s wrong. And you guys are the experts, and you’re telling me it’s not. I mean, they’re saying have you had a migraine before? And I said no. And I said, well why do you think it’s a migraine?

    Yvette Adams 6:22

    And then I had to question it and say but would you face go droopy with a migraine? And they said, Oh could be Bell’s Palsy. So okay, what’s Bell’s Palsy? like googling it and stuff. But I knew in my family, there was stroke. So my great-grandmother who I think I’ve got some of their genes on kind of look like that side of the family.

    Yvette Adams 6:43

    She actually died instantly at 37 of a stroke. And then her daughter, my grandmother, same thing, very strong connection too, she died of a stroke, although she was 69. So that was the only reason I thought maybe a stroke because of that sort of family history.

    Yvette Adams 7:01

    But yeah, I guess I had a registered nurse or hospital and a doctor, pretty much the doctor, to be honest, belittled me, you know, I said, I was talking funny. He said, Yeah, but all Kiwis talk funny. And I was sitting there thinking, this isn’t real funny. Like, I feel like rubbish. And when I looked back, it was so obvious.

    Yvette Adams 7:19

    You know, I went into the MRI and it’s like, I knew something was very wrong, because I actually burst into tears in the MRI, like my body just went you’re about to discover something that’s going to blow your mind. And then even coming out of there and I driven myself there by myself.

    Yvette Adams 7:35

    I walked into the reception, and I forgotten to put my bra on I’ve forgotten to put my jewelry on I was so not with it. Yet here I was driving a car because I didn’t know I’d had a stroke. So I guess the lesson on that is if you feel like something’s wrong, yeah, keep going to medical professionals until you feel like you are getting the diagnosis that sits well with you or that seems right.

    Bill Gasiamis 8:00

    It’s such a hard thing. You did all the right things and it still didn’t turn out right. I’ve interviewed heaps of people who have been down the same road. And, unfortunately, waited way too long. Well, didn’t wait way too long. Got help way too long after they should have and as a result that left them with deficits that they could have avoided.

    Bill Gasiamis 8:22

    And a road to recovery that’s way longer than necessary. And all the issues that come with that. You kind of got to give the doctors and the nurses and all them a break a little bit but still to say things like but all Kiwis talk funny because you’re from New Zealand and you happen to be living in Australia as a way to justify not doing something is such a weird thing. Like his next question should have been your speaking funny how?

    Yvette Adams 8:59

    I know. He was very embarrassed, actually, I think as well, because of what I had. I had multiple infarcts. So I had them all over my brain and I’d actually been having them for two weeks. Unbeknownst to me. I’d been to New Zealand after all the COVID lockdowns to visit my family and friends and I was you know, desperate to go possibly the air pressure and possibly doing more exercise than usual.

    Diagnosed With A PFO

    Yvette Adams 9:24

    But as it turned out, I had a hole in my heart which is how I was having the strokes but when I said my symptoms, they didn’t add up for him the GP because I said my vision went on my left but my pain was in my right temple, but my arm on my right side went so that’s where I think he went. It can’t be a stroke because it would all be on one side right? But when the diagnosis came out, it made complete sense would lose your vision because it is one over on that side as well as on the right side.

    Bill Gasiamis 9:56

    Okay, yeah. But still though droopy face, talking strange, weakness or sensation like, you know they are the three of the four face and arm well, one is enough and face and arm speech. The last one is time. It’s just time. It’s not anything else. It’s just do something.

    Yvette Adams 10:26

    Yeah, I know. They were really onto it once I got to the main hospital. But yeah, I just wasted about five days. And who knows whether I’ve got some cognitive deficits that could have been avoided now, maybe. But I mean, yeah, they diagnosed the hole in the heart.

    Yvette Adams 10:43

    And it still took another month before I got surgery to close that. And so I did feel like a bit of a ticking time bomb walking around thinking, Will I have another one? Because there’s nothing stopping and other clot going through my heart right now. So that was quite a scary month and a half and anxious time.

    Bill Gasiamis 11:03

    They would have put you on blood thinners I imagined during that time?

    Yvette Adams 11:07

    They did immediately. Yeah, high dose and they put me on clopidogrel as well. And they wanted to put me on a third thing. And I guess something I learned was to question everything because I went what is each of these for? Like, you know, if you’re the medical experts, fine. But of course, I’ve lost a bit of faith from this experience and some others.

    Yvette Adams 11:28

    What is this for? And they said it’s for high cholesterol? And I had to say, but I don’t have high cholesterol. And I think they just did it standard stroke procedure, but I said but I’m not a standard stroke patient, you know, I’m not older, overweight, you know, got high cholesterol. So why would you prescribe that to me? So I negotiated them from three medications to two immediately. And I’ve since negotiated down to just aspirin because I just didn’t feel it was right for me or necessary.

    Bill Gasiamis 11:59

    So the cholesterol medication. And then what was the third one going to be?

    Yvette Adams 12:03

    Clopidogrel was an anti-platelet drug of some kind. Yeah, but I mean, it seems, if you read all the side effects, headaches, fatigue, all these things, which I definitely had post-stroke, and I just wanted to eliminate the medication and try and work out what am I left with? Or how am I really feeling without this medication. And so I questioned the cardiologist as to whether it was absolutely necessary. And he said I could come off it.

    Bill Gasiamis 12:32

    I was speaking to somebody in a coaching environment years ago. And one of the first things in the initial stages, the conversation and coaching, was just trying to get a bit of a background understanding the health and well-being of this person.

    Bill Gasiamis 12:47

    And I got told that they were taking a medication. I’m pretty sure it was a birth control. And they’ve been taking it for about 15 years. And it wasn’t for birth control purposes back then it was to settle something else. I think it was a hormonal thing.

    Bill Gasiamis 12:47

    And, and then I just asked like, so what’s the situation about this medication? What are you going to be doing moving forward? How are you speaking with your doctors about it? She goes I haven’t spoken to my doctors about it for about six years. And I was like, okay, any reason why? I just haven’t been and I just take it. And I’m like

    Yvette Adams 13:36

    Question everything right? You have to.

    Bill Gasiamis 13:40

    Yeah, do you have this issue anymore? I don’t think so. And it’s like, wow, so detached from anything else, that you’re just still swallowing this medication that you’ve been doing for 15 years, because somebody told you 15 years ago to do it. And you haven’t followed up and you haven’t done any of those things.

    Bill Gasiamis 14:01

    And nobody has also thought to go. Maybe we should be looking at following up these people and every so often see how they’re going and what they’re doing, send them a notification to maybe do a checkup or an appointment or something. So the first thing that happened after that conversation was she made an appointment saw her GP, they both worked out that she doesn’t need to take it anymore and she stopped taking it.

    Yvette Adams 14:24

    Yeah. Did it helps at first?

    Bill Gasiamis 14:30

    Yeah, the process eliminated one thing out of the many things that needed to adjust or change or resolve or whatever you want to call it. And it’s one less thing that you need to do and swallow and impact your your biology with right? And I’m not against medication, absolutely not against it.

    Bill Gasiamis 14:54

    But cholesterol medication when the reason you had a stroke was PFO. Of course I would question that as well, that’s ridiculous. And then, and then another medication for platelets, because sometimes platelets cause clotting. And it’s like, again, you know, why was the clotting occurring, and for them their prevention medications, but I know people that have been on cholesterol medication forever.

    Bill Gasiamis 15:25

    And they’ve never had to really be on it. But they’re told to do it, and they just do it. And then they just go through this process. There are long-term side effects of all medication, and you need to know what they are. And I’m not advocating for anyone to stop medication based on what I’m saying. But if you’ve been taking some medication, and you’ve just been doing it, go and get some advice.

    Yvette Adams 15:57

    Yeah, if it doesn’t feel right for you, and you’re having bad side effects, question it, explore it.

    Bill Gasiamis 16:05

    So how long were you in hospital? And what did you leave hospital with what kind of challenges after the first stay with a stroke and the clot symptoms.

    Yvette Adams 16:18

    I wasn’t in hospital long at all, because it was a 24 hour diagnosis. I mean, I felt pretty poked and prodded. I had a lot of blood tests, a lot of all sorts of tests. And then they went, we think it’s this hole on your heart. Once I did the bubble tests, they call it where they throw a bubble through your heart chamber and it goes through, there’s a hole.

    Yvette Adams 16:39

    So they do a little OT test on me to see how I made tea and toast in the kitchen and how I was sort of functioning with my daily living. But at that stage I mean, I’m really very lucky, I can talk I can well, I wasn’t walking then because of the broken foot, they gave me a nice Moon Boot, which really helped because I was in a lot of pain, it was fully displaced my toe.

    Yvette Adams 17:04

    And they sent me home with the medication said, you know, your book, and for the heart surgery publicly pretty much. Just take it easy. So that was it. So at that stage, I hadn’t had any I guess we’d call it neuro psych assessments or anything like that. Then just because it was still a little bit COVIDy and just getting into the system and these huge demands, and there’s delays.

    PFO And Stroke Recovery

    Yvette Adams 17:30

    It took a while to get into rehab and get assessments done. And to be honest, that was fairly bumpy, not saying, you know, I’m angry at the system, it’s just the journey, it was for me, I think I had three OTs in over three months, so you’re not really getting any continuity of care. And then finally, I had the neuro psych assessment, I knew in myself that I was affected cognitively.

    Yvette Adams 17:53

    But I didn’t know how to articulate it or what help I needed. So finally, I had that test. And then it’s a really long time to get the test back and explain it. And for me, it’s my working memory is impacted. I was telling you about my short term memory because I literally couldn’t remember what I did yesterday, or where I parked car once I got driving again, after a month.

    Intro 18:15

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

    Intro 18:40

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

    Intro 18:59

    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.

    Yvette Adams 19:18

    Little things like that. So my working memory, which affects my planning and organizing, my attension overall. So concentrating on things is difficult. And I actually almost wonder if I was perhaps a bit ADHD before this happened, and now it’s really exacerbated as well.

    Yvette Adams 19:41

    So I could lose my train of thought and things quite easily. So, I mean, I think I was pretty high functioning before so I’m sort of average or poor in some areas now and they gave me some stuff to work on. But for me I really notice the difference.

    Yvette Adams 20:00

    And I get quite frustrated. Fatigue and pacing is also an issue for me and headaches. So they’re all invisible things. And, again, I’m so grateful and lucky. And I don’t want to sound like I’m, what’s the word? You know, hard done by because I’ve, I’m very aware, I’m really very lucky.

    Yvette Adams 20:19

    But by the same token that’s changed everything in my life, it’s been a very difficult adjustment for me from what I was doing to what I do now is very, very different and been hard to accept emotionally. And then, life adjustments very, very difficult. The fatigue for me can be debilitating, I can be laid up on the couch for three days in a row, I can’t even sit up. So I feel like I’ve got this little battery.

    Yvette Adams 20:46

    And every morning, I wake up and go, what am I going to do with it. So just now I’ve done the walk, and I’ll probably make dinner soon, first thing in the morning, because that’s how I get it done. Work out any tasks I need to do that need my concentration, filling in forms or things or organizing myself for the week thing on Sunday. And then that’ll be it. I’ll be laid up on the couch probably later this afternoon because that’s just the way it is for me at the moment. But I still like seeing myself as being in recovery. Six months.

    Bill Gasiamis 21:19

    You’ve got people that are saying they’re in recovery, 10 years out I’m one of them.

    Yvette Adams 21:24

    Yeah, really?

    Time Management After A Stroke

    Bill Gasiamis 21:25

    You know, because everything you describe the things that I still go through, they’re not as bad as they were at the beginning, at the acute phase, it’s a little worse. But as your brain heals and gets better and better and better, you get back to yourself more and more and more. And then what you find is every once in a while, you just get wiped out. And it’s like, oh, I remember this, I don’t like this and you go through the process of okay, do nothing for the next two days, cancel all the appointments have nothing to do.

    Bill Gasiamis 21:59

    And I was the same I love what you said about your battery, you know, it’s that big. And what am I going to allocate it to. And that’s what I used to do as well, I used to have a real it was really important for me when the kids when I was when they were younger in school, that would come home from school and my wife would come home from work, I would have a meal ready for them.

    Bill Gasiamis 22:24

    So I would do almost nothing to make sure that I could get the ingredients and that meal cooked and ready for dinner when everyone got the big. Yeah, whenever I was in the house at 6:30pm. And then and then I would be what wiped for the rest of the day. And I haven’t done anything the whole day leading to that anything compared to my previous version of me.

    Bill Gasiamis 22:53

    And the other thing you said about the car, and not knowing what’s going on and you need a neuropsychologist to test your cognitive awareness and your cognitive deficits actually to see where they’re at. And because you’re the stroke survivor, and you don’t know how to articulate that you’re just in the lala land in this spaced out zone. You don’t know you can’t articulate that help that you need.

    Bill Gasiamis 23:25

    Like the exact thing that you need is to say I need help with these things. But I actually can’t get it out. And it took me it took me my think maybe within about six or seven weeks of counseling with my psychologist, after the first and second blades, she said to me Have you had a neuro psych assessment? And I said, I don’t know what that is. She could tell that I was talking differently, I couldn’t string sentences together, I couldn’t remember what I was about to say, even though I was about to say it would go in the middle of the conversation.

    Bill Gasiamis 24:10

    I would just lose my train of thought exactly what you said. And because she said that my wife and I then made an appointment with a neuropsych. Because we didn’t. Again, we’ve never been through this before we didn’t know to go and just pay a neuropsych the $500 it takes to get an assessment.

    Bill Gasiamis 24:29

    Because I didn’t know that we waited nine months to see a neuropsych in the public system. And by the time nine months came, a lot of those things had come back. And therefore my assessment had been inconclusive. And they didn’t recommend anything afterwards.

    Yvette Adams 24:53

    But you’ve also had nine months of frustration and lack of help which is just so difficult for you.

    Bill Gasiamis 24:59

    Really hard really, really hard. So all the things that you mentioned, very similar to what a lot of stroke survivors have mentioned. And then you’re going through all these changes all these weird things, and then you’re dealing with the emotional side.

    Emotional Lability – Yvette Adams

    Yvette Adams 25:12

    That’s difficult. I actually think it was my psychologist, you learn all these new terms, don’t you? Who said I think you’ve got emotional lability. And I’ve had to go, what’s that? So yeah, she explained it to me and anyone can Google it, but it’s when the part of your brain that’s affected affects your emotional regulation. And for everyone that can present differently it can be anger can be outbursts, it can be laughing uncontrollably, and weird places for me it sadness.

    Yvette Adams 25:43

    I can just burst into tears for no real reason. And I’ve always been a bit of a tomboy, and I’m quite a strong person. I’m not that kind of person. But one example from last week is I went for a swim in the ocean with my partner, I love the ocean, I love my partner. I think I was just tired. So tiredness then connects to the emotional lability. And I just burst into tears.

    Yvette Adams 26:04

    And he said, what’s wrong? And I’d say, I don’t know, I just can’t help this. And it’s a horrible feeling not being in control of your emotions, and that can stop you’re socializing, because you’re worried that that will happen. And that will be embarrassing. And yeah, if you don’t know the people that well, and they can’t see you have any deficit. So know that you’ve had a stroke, they just go, what’s wrong with this girl? She’s just crying for no reason, is she drunk? And I don’t even drink and all these things. So then the socializing gets tricky as well.

    Bill Gasiamis 26:35

    Pseudobulbar affect, that’s another name for it Pseudobulbar affect. And it’s very common, and you hear about it from most stroke survivors. And I had that, and I’m a blokes bloke, and then all of a sudden, I’m a crying ball of a mess. And over nothing over the cat tripping over or I don’t know what, sad movies immediately. And recently, even though I thought kind of, I’ve also done it on stage presenting, chatting to 200 people.

    Bill Gasiamis 27:20

    And I always sort of told myself before the beginning of the presentation, I’m not going to do this today. It’s not going to happen today. And I prepare myself and I get to another point in the presentation that I’ve never cried at before. And bang, sure enough, I have to compose myself and go again, it makes it okay in a presentation. Because if you’re talking about stroke and stroke recovery and overcoming adversity, it kind of brings the crowd in, and you have them.

    Bill Gasiamis 27:55

    It’s not ideal. But recently, I thought I was beyond it and over it and had moved on my team, which you may have heard of in the Australian Football League is Collingwood. And they had a cracking season. And we went to follow them in interstate for the last game of the season in New South Wales.

    Bill Gasiamis 28:19

    Were in and saw them play against Sydney Swans. And they lost they lost by a couple of points. I was crying in the stadium. But because everyone was so in their own emotions, some of them are going crazy because they won. And the others, me and all my people were all depressed in their own way.

    Yvette Adams 28:44

    You looked like a really passionate supporter.

    Bill Gasiamis 28:47

    I just turned around, looked down and just stopped making eye contact with everyone and cried. And the two weeks leading up to it because I couldn’t get to the game. I was watching it at home on the TV. And we had one again by just a few points just got over the line. I was so emotional, my wife was laughing at me because I was crying at the football.

    Bill Gasiamis 29:14

    And then the following week. She said to me, so the second last game of the season when that game, they just scraped that alone. And she just looked at me and she said, You’re gonna cry today? And I had already started crying. I had already started. I told her to get lost and leave me alone. And we had a laugh about it. But over the football over a win and a loss at the football. It’s something that I couldn’t care less about 99.9% of the time. I just couldn’t stop myself anyway.

    Yvette Adams 29:47

    It’s good that your wife makes a joke of it. And my kids do too. They’ve started calling me Dory because I forget things. And I don’t know what it was the other day we walked out, and I overheard my daughter saying to my son, she’s just Dory. Like, she just forgets everything now, but it’s kind of cute. I’m okay, if I worry. At least I’m still alive.

    Bill Gasiamis 30:10

    Yeah, absolutely. With my memory, I’ve got this weird memory thing. So I’ll prepare myself in the morning. I’ve got to get this and that. And then I got to leave the house. And I’ll walk out the door, the threshold of the door. And then I’ll remember, Oh, I forgot this and that, and then I’ll go back and get it. And again, it’s become a thing that my wife has noticed. “What have you forgotten now?” And I’m like “I haven’t forgotten anything. I’m just going through my process.” My process is I’ve got to go through the threshold of the door. Take two steps down.

    Yvette Adams 30:44

    Remember what you actually need.

    Bill Gasiamis 30:48

    I’ve got to get my stuff in the moment of preparing my preparation cycle is completely out of work. I can’t do it. It doesn’t seem to work, the things that I need to do and one day it might be I forgot my son, the next day might be I forgot my hat. Or just weird things, my food that I make for lunch, I might leave it on the on the counter and not take it, my water bottle every day it’s something, every single day. And she’s just like, she’s just used to it.

    Yvette Adams 31:18

    My partner sits in the car with the engine going and the garage up waiting for me. Because I go out. I come back. I go out. I come back. And I’d make lots of apologies and say I’m really sorry. It just takes me ages to plan and organize now. I’m sorry. He’s always like, it’s alright. It doesn’t matter. But yeah, I can’t just leave with everything I need.

    Bill Gasiamis 31:41

    So bizarre. Is it your own business? You’re involved in your own business?

    Yvette Adams 31:48

    Yeah.

    Bill Gasiamis 31:48

    Tell me a little bit about that.

    Managing Multiple Businesses After A Stroke

    Yvette Adams 31:50

    Technically, I’ve got three businesses but once quite an established one. And you know, largish, there’s 20 staff and about 40 contractors. And fortunately, I had a 50% shareholder business partner. And she’s been very wonderful. She’s very wonderful person, great friend, she’s actually due up here tonight, I’d had a senior manager start only a month prior to the stroke. And rather than, you know, a nice, easy onboarding, it was kind of a swim or sink now.

    Yvette Adams 32:21

    And at the same time, he also hired another guy who had experience running his own agency came on as an account manager, that’s a creative marketing agency. And he was a real blessing. So I guess between those three, they took my rather large workload, it wasn’t a one-person job.

    Yvette Adams 32:38

    And I was pretty concerned about that. In hospital, I remember, crying, you know, saying, I don’t know how this is going to work, like who’s just going to take over myself, but nothing like a good old crisis for people to somehow figure it out.

    Yvette Adams 32:53

    And yeah, it worked out really well, I guess, in a really strange way, the strokes made me realize, I have actually got the business to a point where I can retire or semi-retire. But I’m in this weird zone of having to decide, what do I want to do? Am I trying to get back to work? Do I not? I want to make it even because if I’m out or semi-out, I want my business partner be out, because we’re both getting the same wage.

    Yvette Adams 33:19

    So anyway, there’s ongoing discussions. And yeah, I think we’re big enough now. And things are going well enough that we’ve set it up really well. Thank goodness that happened, I guess now and not 10 years ago, when we were in the earliest stages of the business. So yeah, thankfully, I had those things in place, and the business still operates. But I’ve had to, I’ve used the opportunity to simplify a lot of stuff.

    Yvette Adams 33:19

    So get out of stuff of, you know, it’s not essential kind of thing. My other business or training business, we’re actually on this week, merged it with the current business, because then I’ve got the support of all of those staff. And it was a training business. So through COVID, it really suffered, we couldn’t run the in person training anywhere in Australia, like we had the past few years.

    Yvette Adams 34:05

    I was doing a lot of public speaking as well. I was a trainer for Facebook until startup last year. So yeah, I have done some speaking things I would like to get back to speaking, I think because it’s short burst and doesn’t take too much energy. And I’m trying to figure out how I use my story and my journey to you know, hopefully inspire others or help others along the way.

    Yvette Adams 34:30

    I do think that’s what I’m here for. And I also love property. And that’s another thing. It’s not as time sensitive as say client work and things. So I’ve been doing kept doing property stuff, but I definitely need help with forms and organizing. And that’s not an easy thing and it can be frustrating. But yeah, that’s, I guess how I’ve pivoted for now and but I’m still trying to find you know what makes me happy.

    Yvette Adams 34:58

    That’s all brings the money in but you’ve got to find happiness. So next year, we’ve got some travel plans, I’ll get married. And travel used to bring me a lot of happiness. So I really hope that I can get back out in the world and my body will allow me to keep walking around and not be lying down and stuff because we plan to tackle Europe. So my goal right now is to just get as well as I can and figure out my limits and get the help of professionals as well to really know myself as well as I can, by the time we leave. So yeah, that’s all my work stuff I guess.

    Bill Gasiamis 35:35

    Wow there’s heaps going on there. So I had a similar experience with work, before the strokes, I was whinging and complaining that something wasn’t right with the business. You know, I couldn’t run it the way I wanted, I couldn’t present myself to clients the way I wanted to.

    Bill Gasiamis 35:56

    I was running it from home, and how could I possibly be running it from home, it was before working at home was a thing, right? But I was doing it thinking that it’s not a thing. And it’s so weird. And then I got sick. And we’re at a painting company, a property maintenance company.

    Bill Gasiamis 36:14

    And I had work to do. And I thought I couldn’t run my business from home, because it wasn’t professional life and all that type of thing. And then I was running it from a hospital bed that week while I was in hospital. And for the first time I was working on the business instead of in the business, right, and I had, again, my guys, everyone just seemed to just step up and do everything that I thought they were never going to be able to do.

    Bill Gasiamis 36:42

    And they just blew it out of the park. And my clients were just cool. And we went with it, and it worked. And then it stopped working after the second bleed, which when you’re trying to kind of drag everyone along with you, and things are going okay for a while, it’s okay.

    Bill Gasiamis 37:02

    But when you’re not there all the time, the wheels can fall off, right. And that’s what happened and then I had a third blade, you know, so and then brain surgery. So over, it dragged out over three years for me. So eventually the kind of business fizzled out, and things weren’t the best. And then after the third bleed the fatigue it was more debilitating, and the recovery was a lot longer because I had to learn how to walk again, and all that kind of stuff.

    Bill Gasiamis 37:33

    But it gave me that wisdom. And that lesson of I can not grow this into something unless I’m removed from it, like unless I am one step removed from it, and I’m observing it and I’m putting it in motion rather than trying to do everything and be everybody, everything to everyone. And that’s still happening now like I’m still battling with how I’m going to refine it and refine it and refine it.

    Bill Gasiamis 38:04

    And now we’ve just got to the point where instead of offering seven or eight services, we’re offering just one service, simplifying and niching, and niching, and niching, and it’s made it a lot easier for me to get my head around all the stuff that I need to do, and to be motivated to do it. And in Melbourne, as soon as I got back on my feet, after about six or seven years from all the stroke stuff, then COVID kicked in.

    Bill Gasiamis 38:34

    And then we had two years of pretty much locked-down in Melbourne, and we couldn’t do much. So you know, then we have to deal with all of that. But we also traveled and then travel became a priority family so that we could have some memories and great experiences and all that kind of stuff and not put things off until we can’t do it later because we’re too old or whatever.

    Bill Gasiamis 39:04

    And I think what, you’ll find is that, if you overthink this, it’s going to probably be really difficult. What you got to do is you just got to book in, whatever it is that you’re going to do, plan that trip and say it’s happening, this is when it’s happening. And then build yourself up as much as you can and do what you have to do to get to the airport. And then you’re off.

    Yvette Adams 39:31

    Deal with that when you’re there. I have booked I’ve booked booked one way at the moment I’m having the book and chance because booking the whole lot is just too big of a task. And just even getting the first booking was tricky because I had bonus pass like a credit from a previous trip that didn’t go ahead. I’ve got points, I’ve got all these things and I can’t just go to a travel agent and say book it for me please.

    Yvette Adams 39:55

    Because they don’t want to deal in points and passes and stuff. So recently I did book over there, but I’m just doing it in chunks. And then another day, I’ve got the accommodation and Dubai enough to use points. And then the next day, I’ve booked Amsterdam, in points but I do have to book the rest of the trip at some stage. But that’s how I’m dealing with it just biting down into small chunks, but we’re going now, I got the trip over but there’s no trip back at the moment.

    Bill Gasiamis 40:22

    Well, that’s good. And then the other thing is just get the best insurance you can while you’re going to be overseas. And that’s the only thing that we did, like we got the best, most expensive insurance we could possibly get. Because we were going to the United States, and I didn’t want to be in a situation where I end up in a hospital. And even though I may not have or well I didn’t.

    Bill Gasiamis 40:43

    But we kind of thought well, why risk it? We’re going to be so far away from home, we want to be in a position where we can just feel at ease about that one thing, if not everything else, and we’ve got it over the line. And it was hard. I often said to my wife while we were there.

    Bill Gasiamis 41:03

    Forget about tomorrow, I’m not doing anything tomorrow, I’m going to be wiped out. We’re not going to go anywhere, see anything, you can go on your own, I’m just going to rest for the day. And then come the morning, I’d be good. I would have had a good sleep. And I’d say Oh, I’m actually good, I’m good to go we’re gonna go.

    Yvette Adams 41:18

    And did you find that travel energize you too, because you’re in a different environment having new experiences.

    Bill Gasiamis 41:24

    I did and because we were doing a lot of walking and I wasn’t doing a lot of cognitive stuff, or my fatigue was different. It was kind of physical fatigue. And there was a lot less kind of cognitive fatigue. Because the exercise really does help the brain the physical movement, and that really helps the brain. You know, you’re getting dopamine, you’re getting endorphins, you’re getting serotonin happening, everything’s happening.

    Bill Gasiamis 41:51

    And I was really getting energized, but then being extremely exhausted at the end of the day and wiped out. And I think that also helped because then I’d sleep really well. And then I’d wake up really fresh. So it was this really unexpected, strange, real obvious cycle of up up, up, up, up, down, down, down, down, down, down and around.

    Yvette Adams 42:21

    I think if you’re away from all your day to day and your to do list like that, you know what, to cook dinner, I’ve got to do this thing with the kids school, whatever. I’m hoping when I mean, I did travel for seven years in my life and was very free. I didn’t have any responsibilities in that time. I didn’t need insurances. I didn’t have a car you know, I just travelled.

    Sensory Overload And Fatigue – Yvette Adams

    Yvette Adams 42:42

    So I’m hoping to get back to that where all you’ve got to worry about is where you’re going to eat breakfast and what sites you’re going to see today. I’m hoping that I do have the energy because like you say there’ll be less cognitive impact. But I do get sensory overload too. So I’ll worry about that. I went to a concert recently. And that just wiped me out.

    Yvette Adams 43:03

    And sometimes big crowds, I think for whatever reason may be because you’re looking and trying to not bump into them or make sure if you have to engage that you’re saying the right thing or whatever. I mean, I speak Spanish, but there’s a lot more languages, going on in Europe.

    Yvette Adams 43:19

    So that’s probably going to anyway, I’ll see. But at the moment, even I went to my team lunch on Friday, and I was absolutely exhausted afterwards. But there’s like, you know, 13 of us here on the Sunshine Coast. And I guess because I haven’t seen them. And I’m really interested in what they’ve been up to. And but I came home and I was wiped out. Just from that conversation concentrating, I guess.

    Bill Gasiamis 43:42

    Yeah, sensory overload. It’s a huge thing. And you’re very early on in the recovery process, like you really are really early.

    Yvette Adams 43:50

    Doesn’t seem really on six months, but I guess you’ve got the wisdom of time.

    Bill Gasiamis 43:55

    Yeah, 12 months will be early 18 months will be early 24 months will be early, you’ll be getting improvement and improvement and improvement, it will continue to improve. But when you’re at 24 months, you’ll be going he was right, Bill was right.

    Yvette Adams 44:12

    I’m just not a very patient person.

    Bill Gasiamis 44:15

    Well, you’re going to learn patience it’s going to teach you to be patient and to have a long-term view. That’s what’s weird about me is I’ve got this long-term view that I never had before. And I wasn’t like, you know, there’s a generation, which is instant gratification all the time and everywhere. But it was impatient. And I never had the long term view on anything.

    Bill Gasiamis 44:39

    But now I’ve got a long term view on so many things, you know, an investment. Yeah, we’ll sit on that. We’ll see what happens in five years. And if five years isn’t the best thing. We’ll see what happens in 10 years. And then it’s like with a book I’m writing a book so I never knew that a book is gonna take me two and a half or three years to write but it is it’s simply because of all of those challenges that you have, that I also have.

    Bill Gasiamis 45:05

    which is I cannot sit down and concentrate on a daily basis for a long time to write a chapter on the book, I can push through the timeline, so I could sit there and force myself to be there, but I’m not writing anything, I’m not achieving anything.

    Yvette Adams 45:24

    And you’ll be wiped up, and you won’t be able to write for a few days.

    Bill Gasiamis 45:28

    And it’s a waste. So if I’m not feeling it, I don’t sit down. But when I am feeling it, I might do three or four hours, and then I get a good chunk done. And then I feel really good about it. And I’ve just tried to see where those chunks are and squeezed them into my routine. And they usually on a Saturday or a Sunday. And, and even though it’s been so fragmented my time sitting down and writing, even though it’s been fragmented, um, eight and a half chapters into a 10 chapter book.

    Bill Gasiamis 46:01

    So, you know, we’re getting there. And that’s one of the things I’ve gained from how long things take to change after stroke, like how long it takes for you to get back to, your “normal” life, or your new life, or the new you or your new identity, you know, because it’s got to emerge. And it’s got to emerge in this weird stage of life, which is recovery, time to recover, you know.

    Bill Gasiamis 46:39

    And I tell people that you’ve got a 40, 50, or 60, you’ve had a stroke, and you haven’t been unwell in all that time. You know, you’ve had your broken foot and your damaged knee and all that kind of stuff and some heartache and some tough times and challenges, but you physically haven’t been unwell until you had the stroke. Well, you’ve done all these other things all this time, and you haven’t had to stop and rest and look after yourself. Now, it’s just the season for rest and recovery.

    Yvette Adams 47:12

    I’m very philosophical like yourself. And I guess patience has never been my virtue. And whenever something difficult happen in my life, and there’s been plenty I’ve always gone rather than Oh, poor me, because there’s no point in that. I’ve gone. What’s the lesson in this? What who’s trying to teach me what lesson and maybe patience is the lesson in this one, quite possibly is also, I guess, letting go and it’ll be okay with the business because that’s working out fine.

    Yvette Adams 47:43

    And you have enough and yeah, it is rest. But it is hard doing that stick, change that gear change, whatever you want to call it. When you have gone your full tilt personalities, live life to the fullest. You’ve done a lot where I have in my 45 years, it’s difficult to go. Am I satisfied every day just do my walk and my gym and my tiny bit of work or cooking a meal? And that’s it like am I happy with that? So I’m still trying to figure out yeah, what I’ve got to do to Yeah, find that satisfaction.

    Bill Gasiamis 48:18

    Yeah, it’s fair enough. I completely understand I was there as well. But then one day, you’ll look back and you go, Oh, my God, five years have passed?

    Yvette Adams 48:30

    Yeah, yeah. I’m also got the double whammy of got the four teenagers my partner’s got two and I’ve got two my youngest is about to turn 16 Next month, and it’s kind of like, almost empty nesting as well. There are nights where you do go, hang on a second, noise. I’m on a recording. There are times where we go. There’s no kids, what do we do with ourselves? So double whammy because for some people, stroke or not, that would be a lot in itself. Just figuring out who the new you is, once you kids are all grown up and don’t need you all the time.

    Bill Gasiamis 49:07

    Absolutely. Middle age is kind of where I’m at. And that’s exactly what’s happened. The kids have moved on. And we’re both trying to work out who the hell we are and what we do. And I’m reinventing myself every three minutes because I have to because I can’t be doing the things that I’ve always done because my physical limitations don’t allow it. And it’s not fun.

    Bill Gasiamis 49:31

    Some days, you know, my deficits really cause me pain and suffering and I don’t want to be in a physical situation at work doing, you know, that type of stuff. So I try to find ways to reinvent myself. That’s part of the reason for the book. You know, I did a project for that I interviewed people I came up with a hypothesis. I tried to prove it. I got chapters out of it. Now I’m writing to those chapters in Hopefully this book is going to end end up with another book.

    Bill Gasiamis 50:04

    And that’s going to sell and people are going to like it. And they’re going to want the one read the second one. And it’s going to lead to public speaking, you know. And I wanted this 10 years ago, I wanted all this stuff 10 years ago, when I had no hope, in my stroke brain to have been able to commit to it to anybody and anything. And it’s taken 10 years to get to this stage.

    Bill Gasiamis 50:27

    And I’m thinking, man, if I just get this over the line now, I’m going to be set in 10 years from now. And I’m 48. And that’s kind of what I’m thinking. So an all the stuff I said, to motivate you just now to get it over the line. And now you tell me, you’ve got four teenagers, it’s like, okay, hat off you’re doing an amazing job, congratulations, well done. You’ve come so far.

    Yvette Adams 50:54

    Well they don’t all live with us. But you know, you think of your kids, and you help them anyway you can, wherever they are, whatever they’re doing. But yeah, and I’ve written a couple of books too before, so I know your pain.

    Bill Gasiamis 51:07

    It’s like somebody I don’t know who it was. It’s like cutting yourself and bleeding all the time, when you’re writing a book, it just hurts. It’s painful. It’s difficult the whole time, it’s just so hard.

    Yvette Adams 51:18

    It’s a marathon. You got to keep going.

    Having A Long-Term View

    Bill Gasiamis 51:24

    And I’ve never done anything physical long-term to understand what it’s like, my work I don’t see as being the long-term thing that I’ve done. It’s just me like that, that happens easily work stuff happens easily. But I’ve never run a marathon. I’ve never played sport for decades and decades, I’ve never overcome something, you know, that I made myself overcome that I didn’t need to do like a physical challenge or anything like that. I’ve never done anything like that. So this is really testing my resolve.

    Yvette Adams 51:57

    It’s your first big one. Yeah, I didn’t have a background in sport and climbing mountains and all sorts of stuff. But yeah, this is hard. This is up there with the hard stuff, the stroke recovery.

    Bill Gasiamis 52:10

    I remember my brother, because I’m not an academic person, either. My brother had been right. And I remember saying to my brother, you know, degrees and University, who needs all that shit, you know. And he’d say, to me, it’s not about the degree and the university, it’s about sticking to something for four years, and then seeing it through to the end and getting the result now he probably won’t even remember telling me that I’ve never forgotten that.

    Bill Gasiamis 52:34

    And this is what this book has become. It’s become my degree, my four years or three years at the moment, roughly, of putting in time and effort every single day, as much as I can to get a result out of it. And it started with the research. And it started with the finding people and it started with, I had built a podcast before that.

    Bill Gasiamis 52:58

    And it’s like, wow, I get it now I totally get it. So long-term view people, anyone who’s listening, you know, we’re gonna be around for a little while longer. We’re all meant to be here. So focus on the long-term view. So tell me about those physical endurance things that you did in the past? How physical were you?

    Yvette Adams 53:22

    I used to play age group, water polo for New Zealand. So that was pretty physical stuff, boot camps, and you know, swimming, basically, swimming, surf, lifesaving competitively, you know, at national level, as well. So, yeah, I was a very fit teenager. And I had to balance that with trying to be a teenager and go out and get my grades and work and work to get the money to play the sport.

    Yvette Adams 53:49

    So weren’t funded sport. So I actually am so grateful for those experiences. Because when ever I’ve had difficult things happen in my life, I do think I’ve got a lot of resilience from those times of just, you know, getting through it, because you had to kind of thing. And then I’ve, yeah, I’ve like, walked the Inca Trail and done lots and lots of travel that was hard.

    Yvette Adams 54:14

    You know, your altitude and you’re thinking I’m absolutely buggered, and are we setting up camp now and then the guides going see this mountain here? We’re going to do that now. And you’re like, now, we’re not done. I’ve got nothing left in the tank, but somehow you’ve stopped flooding and next one that you’re going up the incline and next minute, you’re nearly at the top and and then it’s all on the downhill.

    Yvette Adams 54:34

    So yeah, I’ve got all those reference points. But gosh, I mean, it’s a difficult journey at 45 is what I am the stroke recovery. And I can totally see how people have a choice. You can just choose to sit on the couch and eat unhealthy food and not work again and get down in the dumps and go down a really dark hole with your emotional state easily. You can easily just do that. it.

    Yvette Adams 55:00

    So it does take an enormous amount of resilience to just go Oh, no, that’s not what I’m going to do. I’m going to push through and you’ve got to have people around you who are supporting you for when those moments sure lights really aren’t. I can’t do it, blah, blah, blah, because it’s, yeah, plenty of them.

    Yvette Adams 55:16

    But I’ve gone back to some of those old sports friends, probably they’re still my friends, because we shared so much together the good things for travel, the bad things, that they’ve been a good support for me, but unfortunate for me, a lot of them are overseas, I don’t have so many locally, yeah, in my life, pre COVID was always on a plane for work, seeing them whichever town I was in.

    Yvette Adams 55:39

    So I’ve definitely felt a bit lonely at times lying on the couch, because I can’t do anything for a while there. I couldn’t walk, I couldn’t work, I couldn’t drive, I couldn’t do anything. And I remember my partner, people were saying to my partner, what can we do to help? And he said, Just come visit, she just wants company, cup of tea. But then everyone’s in such a busy life. Lots of people didn’t come like they just, I think they meant to and they had good intentions. But they just, I get it. They’ve got kids, they’ve got work they’re busy. They’ve got their own priorities and things like that.

    Bill Gasiamis 56:14

    Not many people know how to deal with people who had a stroke or a heart issue. It’s really confronting. You’re in it right. So you’ve got no choice, you’re in it, you’re going through it. But the other person who’s not in it doesn’t want to confront the possible mortality via you don’t want to confront what it means for me to see Yvette like that.

    Yvette Adams 56:41

    They had plenty to say to me, it’s been a big wake up call Yvette, you have a healthy one, like I’m the one who’s always kept my fitness a priority and ate pretty well. And sure, I used to like a drink. I haven’t drunk for six months now really odd wine, but very rare.

    Yvette Adams 56:57

    And that, you know, some of them are party hard. And they’re like, if you’ve had a stroke, you’ve made me really stop and think and I’m like, Well, if that’s what the outcome is, that’s good. But you should think about Yeah, you know, none of us are getting any younger, and none of us are getting out alive. So do what you want with your body. It’s your choice. But think about it, think about it hard.

    Bill Gasiamis 57:21

    Yeah, it’s really confronting. At the beginning, I used to kind of take it negatively as well to hear about people who didn’t come visit or whatever and is like, Okay, now, I’m a little bit more forgiving. And it’s like, I get it, I totally get it. It’s, it’s really confronting, I’m the opposite. I’m the kind of person who likes to help out if I can, and see people and I’ll do what I can. Usually your offer is not taken up anyway, usually when you know what you want me to do, most people will just thankful that you made them the offer.

    Bill Gasiamis 57:57

    But I did feel isolated, definitely felt isolated, and lonely. And that’s why I went to the National Stroke Foundation and became an ambassador. So that I could at least have in all the downtime that I had, I could always have something to look forward to and go and do guys to speak on their behalf and raise awareness about stroke prevention. So I’d get I’d know for a month or two that was booked them planned.

    Bill Gasiamis 58:26

    And I would do everything that I had to do to make sure that I got there for that particular hour. And even then, sometimes I missed them because I forgot or because I couldn’t understand how the calendar worked and how reminders worked on my iPhone and all that kind of stuff. But that made me feel less alone when I found more people who understood me and what it’s like.

    Stroke Support Groups

    Yvette Adams 58:52

    I really started realizing the value of like the stroke support groups. And I have run the stroke line more recently, I think, first six months, a bit in denial a bit like, I’m alright. I can walk and talk. A lot of them can’t, I’ll be right. And I just sort of be this linear journey of recovery like a broken leg. But I’ve realized now it’s not linear at all. It’s round and up and up and down and back here.

    Yvette Adams 59:21

    And so I more recently did go to a stroke group. I did get the timing wrong. Like, it’s hard to keep appointments and stuff. But now I’ve applied for another one. And then I found out about a woman who’s a stroke survivor locally, and I plan to have a coffee with her because I think it’s so important, isn’t it? Like, if you were to make new friends, you’ve been through such a big thing. It’s part of who you are now. It’s kind of hard. I’m I’m such an authentic person.

    Yvette Adams 59:21

    I can’t just sit there and talk about the weather and small talk when that’s not really who I am or what I’m interested in. I’m into the deep stuff and the real stuff. So I I think it’s helpful to connect with people who know what you’re on about in that regard. Like, you don’t have to have a stroke to be friends. I’m not saying that. But you have to be a good listener and empathetic when you’ve someone who’s had a stroke, don’t you like, it’s too big of a thing to just pretend that never happened. And it doesn’t impact on your daily life.

    Bill Gasiamis 1:00:20

    Yeah, there’s nothing worse than being with somebody who’s ignorant to stroke. And I’m not having a go with them. Like, because they’ve never had one. And they don’t know anyone who’s ever had one. And it’s really not their fault, right. But there’s nothing worse than that early stage in my recovery, when they would say to me, how are you going? And I’ll tell them how I was going. And they would be looking at me going, Oh, shit, how do I get out of this conversation now? They’re in far too deep, and then it’s like, I think I’ve got to go to the loo.

    Yvette Adams 1:00:50

    Don’t you love as well. When you go, I suffered quite a bit of fatigue and they butt in and go, I’m so tired at the moment, as well. It’s not the same, or well you know, I forget everything. Oh, me, too. It’s so bad old age. It’s like, I think it’s a little different. But okay, let’s run with it.

    Bill Gasiamis 1:01:16

    Another thing that happened to me, I was away on a trip on a holiday. And we’re walking up the stairs, you know, it’s an old ancient Greek village, you know, the stairs are a mess. At the best of times, and I have my left leg doesn’t do what the right leg does, it doesn’t come up every time I lift it as much as my right leg. And if I’m tired, it’s a bit lazier and the rest of it. And I’ve tripped over the steps, you know.

    Bill Gasiamis 1:01:45

    And my cousin was there who I see once a decade, and I fell over the step going up. And I cursed and complained about my leg. It’s my leg it missed the steps, she goes I miss the steps to every once in a while, it’s all good, don’t worry about it, She’s trying to make me feel better. And I’m thinking what you’re thinking no it’s not that version of it. But yeah, everyone tries to kind of make things better.

    Bill Gasiamis 1:02:17

    And I used to not pick my people well, at the beginning, when they’d say, how are you? Whereas now I’m a bit nicer to people who I know, are ignorant about stroke, and I don’t want to put them in an uncomfortable situation where they have to now listen to me blabber about all my problems and all my challenges. So, you learn, you learn who are the listeners, and who are the ones that you can engage with.

    Yvette Adams 1:02:49

    That’s very true. I talked to a psychologist and they said, put people on trial, which sounds like heavy. But what they mean by that, and it really resonates for me is try them out, share a bit, see if they really listen. And if they really care. And if they really don’t, then maybe they’re not for you.

    Yvette Adams 1:03:07

    But yeah, you have to put a few people on trial. So you get to the good ones, that there is actually a two way thing going where you can. It’s not all about me, but you can give to them and they are actually actively listening to you. And yeah, being empathetic rather than breezing over it with. I get tired too all the time. Just the same for me. You’re like, no, that’s not the case.

    Bill Gasiamis 1:03:31

    I had some weirdo friends who I thought were just terribly non-emotional, and I thought they were never going to be able to step up and they were the ones that blew me away. They come out of nowhere. And then I was like, this doesn’t compute for me.

    Bill Gasiamis 1:03:49

    I cannot understand how this person who has behaved and acted and spoken this way for the entire time I’ve known in my entire life has now come and been the guy who decided that he was going to set up a exercise regime for me, take me to the swimming pool, have a sauna with me, and it’s like, who are you? You weirdo like what did you do to the old person that I used to know like what happened and it was such a lovely surprise.

    Bill Gasiamis 1:04:24

    Maybe you were the catalyst to change?

    Bill Gasiamis 1:04:23

    So there was both sides of it. There was people who couldn’t deal with it and then there was there people who could and stepped up big time. And and that’s okay. For either one of them. It’s okay that some couldn’t. The ones that don’t. Who, who? I think that’s another blessing because I think then they give space for other people to actually be there. So I think instinctively they’re doing the right thing. They know that they can’t support the way that I need support. And instead of trying trying and failing. They’re just going. Let me give space to other people to turn up.

    Bill Gasiamis 1:04:41

    That’s a good philosophy to some people just don’t have the capacity. I’ve been in phases of my life where I’ve wanted to support someone, but I had so much of my own stuff going on, I just really couldn’t. So I do understand that as well.

    Bill Gasiamis 1:05:17

    If you’re not emotionally intelligent, and you don’t know how to practice it, and how to express it, and how to allow people to be vulnerable, and how to be vulnerable yourself, it’s going to be a difficult thing to go to a stroke survivor, and then try and, you know, work it out.

    Bill Gasiamis 1:05:35

    I think the best thing that people could do if people were listening now, and they wanted to know what to do is just like you said, turn up, have a cup of tea, bring a plate of food. And that’s about it. There’s not much more as necessary.

    Yvette Adams 1:05:48

    Listen, crack jokes share. Make it a two way conversation.

    Bill Gasiamis 1:05:52

    Yeah, yeah, for sure. So tell me about the kids that are at home. How old are they?

    Yvette Adams 1:06:01

    At the moment, and it does change. It’s a bit of a revolving door. And there’s only the nearly 16 year old at home, my daughter, so she’s been with us ongoing. But at times, we’ve had my son, and we’ve had my partner’s kids for, you know, five months, or three months since in the last 12 to 18 months as well. So it changes all the time. If they want to come they’re welcome, basically.

    Bill Gasiamis 1:06:30

    Yep. So what’s been the hardest thing for you in this journey so far?

    Yvette Adams 1:06:36

    Oh, that’s a big question. What’s been the hardest thing. I think, just accepting the adjustment to my life. I’m just a very driven person, I’ve always gone and done a lot of stuff with a very full plate. And realizing I can’t just do what my brain wants to do now that I have to work within the limitations of my cognitive deficits. And my physical abilities right now is hard pill to swallow. But I just try and keep positive and think like you say, it’s six months in.

    Yvette Adams 1:07:13

    And I feel like I’m putting too much pressure on myself walk a bit of a tightrope, like sleep well eat well, don’t drink alcohol, the whole lot, because I do feel like if I take one step wrong, usually I go that late night, what happened, you know, so I feel like keeping that strip can be a bit hard, too, because you want to live a bit more fluidly.

    Yvette Adams 1:07:36

    And say, I mean, I went to that concert that really didn’t work out well, because in the sensory overload, I got offered another concert ticket the next day, and another the next day, free, completely free, and I love concerts. But that’s made me go, I don’t think you can go to endure very loud concerts for a while, like don’t test that one out for another six months.

    Yvette Adams 1:07:36

    And so just keep doing the recovery, which makes me a bit sad, because I’ve always really loved live music. That’s part of who I am. But for now, it’s not what I can do. So I’ll work on, do other stuff that makes me happy. It’s finding that other stuff that you can do was a bit tricky.

    Bill Gasiamis 1:08:11

    I can relate to that part that you said. But you’re right. You’re doing all the right things. Absolutely guarantee you’re doing all the right things, even if it feels like you’re missing out on some stuff that you’ve previously not, you know, you haven’t missed out on, you’re going and getting counseling, you’re not drinking alcohol. It’s really, really, really important for any stroke survivor not to drink alcohol for at least 12 months. I didn’t drink alcohol for five years.

    Bill Gasiamis 1:08:40

    And then even now, I had two beers last night, it took me about three hours to drink them. And it’s not nice, like I didn’t enjoy drinking. What they did to me, I enjoy the beer, but I don’t enjoy what they did to me, but I had it over dinner. So it was kind of better than just drinking without dinner.

    Bill Gasiamis 1:09:03

    So 100%, I think you’re doing the right thing there. Sleep better? Absolutely. Always have a routine to try and get into bed set by a time that you know is gonna get you enough sleep so that when you wake up in the morning, your batteries fully charged now whatever, however big that battery

    Yvette Adams 1:09:23

    Sleeps these days, like 10 to 12 hours, massive. I used to survive on four and six hours normal.

    Importance Of Sleep

    Bill Gasiamis 1:09:28

    Yeah, well see that’s important because that’s when the brain heals. It heals the most during sleep, and new things that you’ve learned and new things that you overcome and new neuronal structures and all that they get. Like, they get a lot of time to really sort of embed when you’ve had sleep. And when you have go through the REM cycle and you actually get that deep sleep that we all need.

    Bill Gasiamis 1:09:57

    It really makes a big difference being physical is gonna help you and avoiding concerts, I did that. I avoided football matches where I had free tickets to Grand Finals and all that kind of stuff. I avoided concerts of I think I’ve only been to one or two concerts in the last 10 years. And both of them were one of them was ACDC. And the other one was Metallica.

    Yvette Adams 1:10:20

    Loud

    Bill Gasiamis 1:10:22

    Really, really loud. But I went with the ear plugs that traders use on site. Because I couldn’t be there in any other way or would not have lasted the entire duration of the concert.

    Yvette Adams 1:10:35

    Yeah, I took my noise cancelling headphones. So I did take precautions. And I did that when the lights were a bit much but yeah, and I felt okay at the time, I enjoyed it. But it was the next day when the heads just like. Okay, it’s not really for that. But you gotta test it, don’t you? And you know that this is where the medical professionals can’t tell you, you’re ready for this or not ready for that. So they tell me go try it, you’ll say no, suffer the consequences.

    Bill Gasiamis 1:11:05

    Yeah, one of the tips that I could give people listening, and maybe you is if you’re going to plan a concert or something that’s going to be out of the ordinary, and you want to definitely go because you don’t want to miss it. And you know, tomorrow is going to be a terrible day. Make sure your calendars clear for two days after that. So you can really recuperate.

    Bill Gasiamis 1:11:24

    And I used to do that a lot is to make sure I’m not missing out on this concert. And I’ve got nothing to do the next day and the day after. And it really made it possible for me to feel like again, I wasn’t missing out on something. You’re doing well.

    Yvette Adams 1:11:39

    The acceptance part, you’re right. Because even if I did say I’ve got the day free, I guess I’m still on this mode of I’m just wasting the day. But you know, you can’t, you just gotta go, this is the Netflix, lie on the couch, or whatever. That’s it.

    Bill Gasiamis 1:11:56

    Six months ago, I went through that, I decided that I was going to do nothing. On this particular day, I was going to wake up in the morning and I was going to sit on my bum on the couch or wherever somewhere around the house and just chill out all day. And then I made a post on Instagram. I decided I’m going to do nothing today and I’m feeling guilty about it. You know? So weird. Like, why do you feel guilty about it?

    Yvette Adams 1:12:20

    Yeah. But that’s also part of it, or was that I made to believe? Yeah, you do feel guilty. It’s all the adjustments

    Bill Gasiamis 1:12:27

    Yeah. And what I’m doing if you later on, if I got the opportunity to philosophize about it, look, what I’m doing is actually I am doing something, that something is recuperating, resting, recovering. I’m actually physically participating in that by sitting on my bum and not engaging in other things that would make my mind busy. All this other stuff going on. So it’s like, okay. I really appreciate you reaching out and connecting and becoming a guest on my show. Thanks so much.

    Yvette Adams 1:13:08

    Thanks for having me.

    Bill Gasiamis 1:13:09

    Thanks for joining us on today’s episode. I hope you enjoyed this interview. If you are a stroke survivor with a story to share about your experience, come and join me on the show. Interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor or care for somebody who is a stroke survivor. Or you are one of the fabulous people that help stroke survivors on the road to recovery.

    Bill Gasiamis 1:13:36

    Go to recoveryafterstroke.com/contact fill out the contact form. And as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.

    Intro 1:14:00

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

    Intro 1:14:30

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:14:54

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehab delimitation 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 called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

    Intro 1:15:21

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    The post PFO And Stroke Recovery – Yvette Adams appeared first on Recovery After Stroke.

    1 hr 16 min
  • Reducing Inflammation In The Brain After Stroke – Professor Stuart Allan

    Professor Stuart Allan is at the coalface of stroke recovery research and is leading a team of researchers working on the next generation of clot-busting medication.

    Professor Stuart Allan’s Profile

    Highlights:

    01:32 Introduction: Professor Stuart Allan

    12:19 Brain Cells Die After A Stroke
    15:49 “The Clot Buster”
    19:59 Bill’s Stroke Recovery
    27:24 Minimally Invasive Surgery
    34:57 General Anesthetic
    38:19 Research Timeline
    42:19 Animal Trials
    51:48 Early Intervention
    57:44 What Is Stroke Fatigue?
    1:06:21 Brain Inflammation Research

    Transcription:

    Professor Stuart Allan 0:00

    Those who have had an ischemic stroke will know that they’ve been given a drug called TPA tissue plasminogen activator. So this is a drug with a clot buster. So it’s the one treatment we’ve got for stroke which is given to people with ischemic stroke not hemorrhagic and it breaks down blood clots.

    Professor Stuart Allan 0:13

    And it’s very good, it can work very well, but it doesn’t always work in all people. It’s one reason we think it doesn’t always work is because of the obviously blood clots are made up of different things, different proteins and different cells come together to form a clot.

    Professor Stuart Allan 0:27

    So therefore, the composition of that clot what it’s made up of determine how it breaks up in reaction to a drug. And so it’s believed that TPA doesn’t break up some types of clot, for example, platelets, or blood borne cells that are particularly present in clots. So we’ve developed a drug a new drug here in Manchester, which is at it’s early stages which will basically break up clot the TPA doesn’t.

    Intro 0:55

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

    Bill Gasiamis 1:03

    Hello, and welcome to episode 230 of the recovery after stroke podcast. If you’d like to support the show, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, please comment below the video like this episode, and to get notifications of future episodes, subscribe to the show hit the notifications bell.

    Bill Gasiamis 1:32

    My guest today is Professor Stuart Allen, a professor of neuroscience in the Faculty of Life Sciences at the University of Manchester, United Kingdom, who is working with people from around the world to find new treatments to decrease the impact of ischemic and hemorrhagic stroke. And it is such an insightful episode because it provides hope for people for better outcomes after stroke all over the world. Professor Stuart Allan welcome to the podcast.

    Professor Stuart Allan 2:04

    Pleased to be here.

    Bill Gasiamis 2:06

    Thank you for being here. We got in touch because on Episode 187, I interviewed Fiona Moss, the sister of Natalie Kate Moss, who passed away due to brain hemorrhage. And in memory of Natalie, her family set up the Natalie Kate Moss trust. And they’re doing amazing work, raising money to fund some research programs.

    Bill Gasiamis 2:36

    I believe, at the University of Manchester in the in England. And a lot of times Stuart, what happens is we hear from all the people doing all the great work, raising money and funneling it down all the correct avenues to get it to people like you to do some research. But we very rarely hear from the research about the kind of research that we’re doing.

    Bill Gasiamis 3:03

    And I feel like we’re missing that opportunity to connect with the people who are at the coalface of discoveries and tried to come up with new ways to support stroke survivors and other people with neurological conditions. And that’s why I’m really pleased to have you here on the podcast. Before we get into the conversation. Tell me a little bit about you and your role at the University of Manchester.

    Professor Stuart Allan 3:30

    Yeah, absolutely happy to do so bill. So I’m Professor Allan, I work here at the University of Manchester, I’ve been here for 29 years, I came to Manchester after I’d completed my PhD in University Aberdeen in Scotland, and I moved to Manchester to continue or to really start researching a topic which at the time in the 90s was poorly understood, which is the contribution of inflammation in the brain to brain disease, particularly stroke.

    Professor Stuart Allan 4:07

    So a that was a John area started back in the 90s. And so over that time, I’ve obviously secured an academic position and now I lead a group. So I lead a group here in Manchester that has a real focus on understanding inflammation. What happens in the brain in stroke, why stroke occurs, and what the consequences of that stroke are to the brain itself and actually more widely, and actually what we are most importantly trying to do is try and find ways to reduce the impact of stroke.

    Bill Gasiamis 4:46

    I’m going to ask a question. I want to interrupt it and some of my questions are just me thinking out loud, and these are the things I’m curious about and maybe you can or can’t answer them because your work may not have led you down that path. What comes first inflammation or the stroke?

    Professor Stuart Allan 5:03

    Very good question. So we think another evidence suggests that actually inflammation probably is a potential contributor stroke happening. So if you look at the reasons, there are different reasons, people have a stroke, of course, and there’s different subjects that store, some are genetic. So there’s some rare causes that are genetic, and in the case of Natalie Kate Moss, you mentioned.

    Professor Stuart Allan 5:29

    She had a particular feature in her blood vessels in the brain that might well have been here since birth, that caused a rupture of the blood vessels. But many types of stroke are caused by risk factors. So for example, if somebody has a hypertension, so high blood pressure, if somebody has a atherosclerosis, where they’ve got buildup of fat in the vessels in the body, and these are all inflammatory, so these are inflammatory conditions, and actually, probably the best evidence that inflammation might cause stroke is infection.

    Professor Stuart Allan 5:29

    So if somebody has an infection, you’re about three times more likely to have a stroke. And actually COVID has confirmed that data. So if you look in COVID, there’s this increased risk of basically a clotting and clots forming and COVID. So we think inflammation may be partly contributing towards stroke, it’s not the total cause.

    Professor Stuart Allan 6:26

    But what’s not in question, I think, is that once you have a stroke, so once there’s a bleed, or a clot forms in the brain, and then there’s processes that take place in the brain and around the body that you would call inflammatory. And some of these are good, to be honest, inflammation is a good thing, and some of these are probably good responses, but some are bad responses.

    Bill Gasiamis 6:49

    Inflammation, which is good for example is when you cut your hand, it gets inflamed, and then it heals, and it hurts and it’s hot, and it’s all weird, but then it gets better, right. So that’s good inflammation, absolutely. Inflammation that happens in the brain, so inflammation before stroke might be happening in a different location, and then the brain gets impacted and then you have inflammation in a nother location where the infarct is or where the hemorrhage was.

    Professor Stuart Allan 7:23

    Spot on Bill the inflammation, pre stroke is probably peripheral, you know, in the body and could be in a blood vessel, and then the stroke happens in the brain. And then there’s local inflammation, we call it local so around, where the brain damage is, you get inflammation.

    Professor Stuart Allan 7:39

    But also more widely again, you know, the body, which sort of makes sense, if something happens in the brain, the body responds to that. So that so the immune, immune cells are produced in the bone marrow, and they will then travel to the brain, because they obviously think something’s gone wrong.

    Professor Stuart Allan 7:54

    And they will move to the brain to do something in the same way they would move to kill a bug, to kill an infection that you have. And we still don’t really know fully how the inflammation, what different, I suppose we could talk about benefits and downfalls of inflammation.

    Bill Gasiamis 8:19

    Yeah, so I feel like inflammation at the acute phase in the brain is really good. It’s kind of trying to support healing and recovery, similar to what’s happening in the finger. But then it seems to be that inflammation with regards to stroke, especially ischemic and hemorrhagic scenarios tends to long-term ongoing inflammation seems to be then negatively impacting the brain over and above what the stroke already did. What already the initial incident did.

    Professor Stuart Allan 8:54

    Yeah, that’s what we think. So you’ve got a great analogy, if you cut your finger, it’s a bit painful, it’s sore, it goes red. But then it’s okay. You know, within a day or two, it’s fine, it’s all healed. That doesn’t tend to happen in the brain. So you don’t get this resolution. So that’s called resolution of inflammation, it don’t doesn’t seem to be that same resolution.

    Professor Stuart Allan 9:19

    Or the response is prolonged. So it’s prolonged and it causes a continued problems, basically. And I think most importantly, it doesn’t allow recovery. And you know, why the brain tissue doesn’t recover in the way that peripheral tissue does is obviously, some evolutionary reason you know, the brain is sort of protected from the rest of the body. So it might just be this fundamental differences.

    Bill Gasiamis 9:47

    Yeah. When I was experiencing the first first hemorrhage as a result of a faulty blood vessel an arteriovenous malformation that burst in 2012. One of the first things they did is they prescribed me with dexamethasone, a seriously serious steroid medication that has 60 side effects, and I experienced probably 20 of them. However, what it was designed to do was decrease the inflammation in the brain that was occurring as a result of the blood that had leaked from the blood vessel into the brain.

    Bill Gasiamis 10:29

    So before I knew anything else about anything, I knew that they were actually trying to decrease the inflammation in my brain. And it made complete sense to me. But that’s kind of all I got from it. Like, that’s as much as I understood about it. And of course, I didn’t know that other people were working in the background, you know, in the universities of the world to find ways to support stroke survivors.

    Bill Gasiamis 10:58

    So once I discovered the Florey Institute, in in Melbourne, in Victoria here, I got really excited that there was a whole bunch of people working to support us overcome these issues and find new ways to do that. Tell me about some of the research that you’re currently involved in, and what it’s aiming to do, and how far down the rabbit hole you guys have gone?

    Professor Stuart Allan 11:25

    Yeah, absolutely. So what I talk about now, very much soon, and you’ll be able to I’m sure relate to this as other stroke survivors will, is about that patient journey, because people, you know, obviously stroke happens in an instant. So it’s an instant event that happens to somebody whether it be in your case on an AVM the ruptured or a clot. And so the journey begins before stroke obviously, if you’ve got a risk, if you’ve got an AVM, that’s identified on a scan.

    Professor Stuart Allan 11:57

    Somebody, a neurosurgeon do something to try and remove that AVM to prevent the blood. So that’s prevention, and of course, prevention, in many ways, is what we really want to achieve. We personally our own research, we don’t do a lot on prevention. And that’s not because it’s not important. It’s just it’s a different ballpark.

    Professor Stuart Allan 12:19

    So where we are focused now is really, when immediately after the stroke happens, so whether you get bleeding in the brain or you have a clot, we’ve spent many years trying to understand what’s happening in that first few hours after the stroke happens, because we know that basically brain cells die.

    Professor Stuart Allan 12:39

    So the consequence of stroke, whether it be hemorrhagic or ischemic stroke, which is a clot is a brain cells die. Unlike many people around the world, we were trying to understand why the cells die. And most importantly, can we stop the cells dying, but at least reduce the number of brain cells that die because the problem is if brain cells die, then you’ll lose function of that part of the brain.

    Professor Stuart Allan 13:02

    And that work has been successful in that we, you know, we’ve identified, and we use different approaches, you know, we use cell culture where we culture cells, in a dish, we can expose them to different things that might be floating about in the brain after stroke to damage cells.

    Professor Stuart Allan 13:20

    We also use a mouse and rat models where we can mimic what happens in a stroke. And we’ve identified as I mentioned, that inflammation is important. So we’ve got two approaches to that. One is to give an anti-inflammatory drug exactly you mentioned not dexamethasone, because dexamethasone, as you rightly say, has multiple different effects.

    Professor Stuart Allan 13:41

    And actually was not successful in trials when you looked at dexamethasone. And that’s largely because it’s a steroid that has multiple other actions. We’ve identified an anti-inflammatory drug, which only works much more focused than dexamethasone and it acts to block or stop the actions of a protein in the body that’s produced after stroke called interleukin 1.

    Professor Stuart Allan 14:08

    So interleukin one is a cytokine, it’s a protein that’s produced by immune cells to fight infection. It’s also a protein that’s produced in the brain when you have a fever, anyone who’s had a high temperature will be experiencing the effects of this protein in the brain because it causes your temperature to rise.

    Professor Stuart Allan 14:29

    So we’ve got a drug, we know that there’s a drug that’s licensed for use in patients for inflammatory disease that we’ve tried in animals that we show it works in terms of reduced brain damage, it makes animals better. And that’s been tested in patients. So it’s been tested in hemorrhage patients and patients with a clot and it basically in terms of it reduced inflammation, so that’s good because it tells you the drug is doing what it’s meant to do.

    Professor Stuart Allan 15:02

    Of course, the important thing that people want to know is does it improve outcome i.e stroke patients better. And that’s been tested now. So the drug is in what we call phase 3 trial. So it’s been tested in hundreds of patients with hemorrhage with subarachnoid hemorrhage, which is a bleed around the brain. So we’ll know in about two years or 18 months time that tail will finish.

    Professor Stuart Allan 15:27

    And if people are better, so three months after the stroke, I think or six months outcome, if people are deemed to be better, who’ve taken the drug versus the placebo, then that drug will have proven to be beneficial. But of course, we don’t know. That work’s been done in Manchester.

    Professor Stuart Allan 15:49

    The other work we’re doing is much more focused around those who have an ischemic stroke many of them will know that they’ve given a drug called TPA, a tissue plasminogen activator. So this is a drug with a clot buster. So it’s the one treatment we’ve got for stroke, which is given to people with ischemic stroke not hemorrhagic and it breaks down blood clots.

    Professor Stuart Allan 16:15

    And it’s very good. It can work very well, but it doesn’t always work in old people. And there’s some reasons why that is one reason we think it doesn’t always work is because obviously blood clots are made up of different things, different proteins and different cells come together to form a clot. So therefore, the composition of the clot, what it’s made up of will determine how it breaks up in reaction to a drug.

    Professor Stuart Allan 16:42

    And so it’s believed that TPA doesn’t break up some types of clot. For example, platelets are blood borne cells that are particularly present in clots. So we’ve developed a drug, a new drug here in Manchester, which is this is early stages, we’ve developed a new drug which will basically break up clots, that TPA doesn’t.

    Professor Stuart Allan 17:06

    So we think it might have benefits, improved efficacy, as we refer to it, compared to TPA. So this is the early days, this has been tested in animals, we the drug has been patented now. Which is important, because obviously you can then try and develop it and get the funding to develop it further. So that’s one other bit of work, which is quite exciting. And then related to that is work on hemorrhage.

    Professor Stuart Allan 17:34

    So hemorrhage is devastating, you know, the statistics for hemorrhage are quite startling, actually. So the number of people who die from hemorrhage has not really changed in about 30 years, or 40 years, which is really quite disturbing, actually.

    Professor Stuart Allan 17:53

    If you consider the improvements in medicine across most areas, and yet, in this particular type of stroke, there’s no improvement in mortality for many decades, it’s a very high mortality, about 40% of people will die within one month. And that’s a few reasons why, you know, it’s obviously you get bleeding in the brain, it causes quite a lot of damage, it causes increases in pressure.

    Professor Stuart Allan 18:18

    And there’s no treatment, there’s really no treatment. So we’re really trying now. And actually the Natalie Kate Moss trust really got us started on working on hemorrhage, we didn’t do much work on hemorrhage before, but they really opened our eyes to the fact that hemorrhage was under researched, and there was a real desperate need for treatment.

    Professor Stuart Allan 18:36

    So we’re doing a lot of work now in the group trying to find ways to help the outcome in hemorrhage. And that can be given in what’s definitely known now is that obviously, when you have a hemorrhage, the big difference between hemorrhage and ischemic stroke is you get bleeding in the brain, so the blood leaks into the brain.

    Professor Stuart Allan 18:57

    Blood is not a good thing to have in your brain, okay, the brain, it breaks down. So the blood cells break down and release iron, for example, that’s toxic, that kills neurons, and it causes damage. So one of the strategies that people think may be important to do is to basically remove that blood as quickly as possible.

    Professor Stuart Allan 19:20

    And that’s been done in surgery, so surgeons can go in and take the blood out. That’s not that has yet been shown to be successful. But there might be other ways to do that. And we think, you know, some of my colleagues are working on research where they think they can, for example, change or make the immune cells in the body or the brain it basically eat up the blood, basically swallow up the blood and remove it. And that happens already that happens anyway. But if we can speed that process up, then it might remove the blood quicker and make the outcome better.

    Bill Gasiamis 19:59

    That happen to me, the first bleed was quite small, about the size of my thumbnail. And the second bleed was about the size of a golf ball. And it started to decrease in size, but it took around about I want to say about 18 months before it got to a point where it was starting to get out of the way and allowing the radiographers to take MRIs and actually see beyond the bleed, beyond the clot.

    Bill Gasiamis 20:39

    And as it started to decrease in size, more and more of my function came on, and came back on and came upon, I started to feel a lot better. But for a good eight or nine months, I was really on another planet, my brain had completely turned off. And I wasn’t operating the same way that I was before that second bleed. At one point, I didn’t know my wife’s name, I couldn’t remember who came to visit me. There was so I couldn’t drive, I couldn’t work, there were so many I had fatigue,

    Bill Gasiamis 21:16

    I’d start a sentence and not be able to finish it. All sorts of issues along that and they kind of started to subside, each one of those issues subsided as the blood clot got smaller. And we’re able to track the size of it by doing multiple scans once a month, to see how much it was decreasing and whether it was still bleeding and getting bigger.

    Bill Gasiamis 21:37

    But the third bleed that happened, which was in November 2014. So almost two and a half years after the original bleed, that bleed ended up me requiring brain surgery. And that was when my surgeon, my neurosurgeon said, look, we’ve got to go in now because this thing is continuing to bleed, it’s going to be risky, it may cause you more harm.

    Bill Gasiamis 22:06

    And it might put you in a situation where you’re driving, and it’s dangerous, and you kill yourself or somebody else and all that stuff. And I was very motivated by now nearly three years in to just have this resolved. And the challenge is that after the brain surgery, that’s when I woke up with deficits that have not gone away.

    Intro 22:25

    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 22:50

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

    Intro 23:09

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

    Bill Gasiamis 23:25

    So I had brain surgery in 2014. And now I live with left side numbness constantly tired and some spasticity that’s not visible, in my function, but muscle tightness and all that type of thing, temperature difference on my left side compared to my right side, hypersensitivity on my left side compared to my right side, my left side gets more tired, much more quicker than my right side and when I have a drink, which is very rare, but if I have one drink, my left side pretty much is already drunk and gone. My right side still wants to have a party.

    Bill Gasiamis 24:07

    So what you’re saying about the surgery option, it seems to be a good resolution and a full stop to this faulty blood vessel that wants to continue to bleed. But it was the thing that made me unwell more unwell than all the bleeds even though the second bleed was very serious. If it got out of hand it would have been far worse.

    Bill Gasiamis 24:35

    But I get excited when I hear about things like research into hemorrhagic strokes now. Again, prevention doesn’t seem to be on the radar of too many people. I know in Australia, the National Stroke Foundation does preventative work. So as a stroke safe ambassador that I am, I’ll go around and talk to people about how to prevent stroke, whether it’s usually around they’re talking about ischemic stroke, but there’s a lot of talk around about going and getting your head scanned, for example, so that you can see whether there’s an AVM in there.

    Bill Gasiamis 25:21

    And then even if you do find an AVM or a cavernous angioma, and there’s like, what do I do with it? You know, do I go in and take it out? When it hasn’t done anything to me for all these decades? Or do I go in and risk brain surgery and get it removed? There the challenge challenges that I find that’s one of the things that it’d be really difficult for me to get behind. I kind of want people to be aware as to whether or not they’ve got a AVM or cavernous angioma in their head.

    Bill Gasiamis 25:53

    But then, I don’t want to be the person who says yeah, go have brain surgery, because I don’t know what that’s going to end up doing to you. So it’s a very interesting situation. But to find out that perhaps we can remove clots in the brain quicker somehow, that’s really exciting. And that would have been amazing for me, because that would have given me back nine months of being in la la land.

    Professor Stuart Allan 26:33

    Yeah, absolutely. And your point about, you know, everyone, because you could argue that everyone has a brain scan and you know, early on and identify an AVM but as you exactly say, the problem is there’s no treatment there. As such, you know, the quandary then is for the neurosurgeon, you know, and the patient is do you operate to remove, but potentially cause a bleed.

    Professor Stuart Allan 26:56

    So that is a quandary in terms of, you know, removing blood. So I think what’s exciting, I think is it’s definitely been recognized that doing surgery, major surgery, so major invasive surgery, where you might remove some of the bone, and I suspect this may have happened for you, we did it quite major surgery, that definitely doesn’t work. And that’s probably due to the complications and the impact of the surgery itself, because it’s not great, opening up the bone in the head.

    Professor Stuart Allan 27:24

    And if you’re gonna dig in and get the blood out, it’s causing damage anyway. But what the neurosurgeons are doing now is actually what they call minimally invasive surgery. So they’re basically trying to be, you know, as carefully as possible to disrupt, to cause as least disruption as possible to the normal tissue. So they’ll drill a very small hole, a very, very small hole and put a very, very fine needle into the bleed, and then try and remove it either by injecting TPA, which I talked about earlier on, which will break down the blood and suck it out basically.

    Professor Stuart Allan 27:59

    Or, and there’s a trial now in Holland just started actually, where they basically I think the device they put in this long needle has a little blade that cuts up the blood, and again, sucks it out, basically. So that definitely holds promise, I think that definitely holds promise.

    Professor Stuart Allan 28:20

    And for me most excitingly as a basic scientist, because one of the challenges in treating stroke is if you need to get the drug, to where the damage is on the brain. That’s not always easy, because obviously, the brain is protected. So, you know, the brain has what we call the blood brain barrier. The brain doesn’t let drugs to get in very easily in other substances.

    Professor Stuart Allan 28:43

    So that’s a challenge. And that’s one of the reasons why so many brain diseases are very hard to treat, because actually, it’s difficult to get drugs designed that will get into the brain. But actually, if a surgeon is going into the brain anyway, to remove a clot, then actually you can go you’ve got to route into the brain directly. So what I think most excitingly for me is that if they do the minimally invasive surgery removes the clot, which I think undoubtedly is a good thing.

    Professor Stuart Allan 29:12

    And at the same time, inject a drug directly into the tissue, then that will promote repair, then you’ve got a double win, basically. And I think that, to me, is the exciting thing, which could be the future treatment, you know, could be the way forward to try and impact hemorrhage. Of course, what we don’t know is what drug we put into the brain to repair a brain damage. I think that definitely has opportunity to do that.

    Bill Gasiamis 29:44

    Are you able to give some kind of a description or explanation about what the blood-brain barrier is? I’ve heard about it I understand what it does. Basically, from my understanding what it does, it stops toxic foreign substances from getting through the blood and into the brain. But is it a physical barrier? Is it inside the blood vessels? Like where is it?

    Professor Stuart Allan 30:14

    Yeah, so it’s so basically it’s the blood vessels themselves. So you know, blood vessels are made up of what we call endothelial cells. So the endothelial cells are the cells that make up your blood vessels throughout the whole body, along with other cells that form alongside them and muscle cells. But basically, the endothelial cells are the main cells. And then if you can imagine the cells joining end on end, so these cells link up end on end.

    Professor Stuart Allan 30:41

    And the big difference is, the key difference is, the cells and other organs in the body that join up but not that tightly. So the join between the two cells is actually quite loose. Which allows movement of substances in and out a bit easier. The brain cells have what we call tight junctions, so it’s simply their referred to as tight junction. So basically, the cell, the contact between two adjacent cells, is very tight.

    Professor Stuart Allan 31:12

    And that’s because it has special proteins and special complexes that formed between the two cells. And that’s what makes it tight, that’s what makes the brain barrier what it is. So it isn’t special, it’s just the endothelial cells are different. And they form this tight barrier. So nothing can move between the sails. So if you imagine trying to squeeze through a gap, you know, if you’ve got a door that’s slightly ajar, then you can get squeezed through that gap.

    Professor Stuart Allan 31:43

    If it gets a bit bigger, you can get more things through it. Basically brain barrier is a door that’s really tightly shot, and you can’t get very much through it. And what’s thought to happen is actually Bill one of the most exciting areas of research, I think that what now seems to be the case is that that barrier is not as good in age, certainly when you age, that barrier becomes less strong.

    Professor Stuart Allan 32:13

    And in many diseases, so it definitely breaks down. So when we say it breaks down, these junctions open up, or even you can believe it or not, you can move things across the cells themselves, basically, you get small, vesicles, or you get little cargos that can get carried across the cell.

    Professor Stuart Allan 32:37

    And that increases. And in stroke that definitely happens, in Alzheimer’s disease, there’s some evidence now that blood-brain barrier is disrupted as well. So it’s quite an exciting area of research. So it’s there, you know, the blood-brain barrier was designed to protect the brain, but it definitely breaks down in disease it might therefore be a contributor towards certain conditions and certain behaviors.

    Bill Gasiamis 33:08

    Are they measuring the blood brain barrier, do people physically able to move that?

    Professor Stuart Allan 33:13

    We can’t do that, and that’s, that’s why we’re beginning to understand more about this, you know, one of the challenges in medicine and science is obviously trying to understand what’s happening in a living organism, particularly in humans. The brain is obviously not easy to study, because it’s trapped in a in a in the skull. Imaging, you know, things like many people listening will have had a scan, a brain scan, and you mentioned brain scans.

    Professor Stuart Allan 33:40

    So if you have an MRI scan, for example. And these, these techniques, increasingly, scientists are improving and come up with new techniques to be able to visualize or see what’s happening in the brain. And one way to do that is to do you can image the blood-brain barrier so what you can do and it’s actually quite simple, when you think about the concept is to inject something into the blood that you can see using an MRI scanner

    Professor Stuart Allan 34:10

    Basically it will cause a change in the picture looks like on an MRI scanner. And if the blood-brain barrier is leaky, that substance will leak into the brain so you’ll be able to see a change in the brain in terms of leakage of substance and that’s what’s now being done.

    Bill Gasiamis 34:31

    Similar to an angiograph.

    Professor Stuart Allan 34:33

    Exactly so if you think of an angiogram you know obviously if there’s leakage of the contrast into the brain then that tells you your blood brain barrier is leaky so people are doing that a lot more to try and understand when there’s blood-brain barrier leakage and where about is that importantly, you know which part of the brain for example might be affected.

    Bill Gasiamis 34:57

    Wow, absolutely fascinating so I have a question that came up in my mind about general anesthetic. How does that put people to sleep? Does that impact the brain? Does it go through the blood brain barrier? I know that again, it might not be an area that you’ve studied or researched any idea simply how anesthetic works? Does it go through a different mechanism to actually put people into a state of sleep?

    Professor Stuart Allan 35:33

    Anesthetics, you know, whatever your local anesthetic or general anesthetics basically or drug what it does is that it binds you so the brain, the whole body is controlled by neurotransmitters. So everything we do is controlled by these proteins, these substances, chemicals that move around the body, and these chemicals must have an act and these chemicals need to interact or bind to a protein on the surface of a cell.

    Professor Stuart Allan 36:03

    So they’ll bind to a protein on the surface of a cell. And then they’ll cause some effect. So for example, when we can be able to speak and produce sounds or to hear is all caused by transmitters and causing changes. So anesthetics basically, block they block signaling in the important parts.

    Professor Stuart Allan 36:29

    A local anesthetic, we’ll do that locally. So it’ll stop the movement. And what happens is when a neurotransmitter binds to its receptor, or it’s putting on cell surface, what typically happens is it causes a change in the membrane of the cell and allows ions to flow in and out. So that will change the cell property, the cell will then change and that will cause a change something that doesn’t seem to happen.

    Professor Stuart Allan 36:58

    Anesthetic stop that happening. They block it, they stop it happening, basically. So local anesthetic will do it in a local a localized way. And a general anesthetic will act in such a way to put you to sleep. And similar to an epidural, if you think if an epidural is where people get, obviously block, a awful lot typically is used obviously in pregnancy, or for lower body surgery.

    Professor Stuart Allan 37:27

    And that’s because you can inject basically the the anesthetic directly into somebody’s spinal cord, and it acts to stop signals, it binds to these receptors and stop signals traveling. It stops a pain basically any pain signals coming up to the brain.

    Bill Gasiamis 37:46

    Right? Okay, it’s it’s a completely different mechanism, it doesn’t require access via the blood brain barrier, it is a very different thing. All right, that answers that. So your research into this, “new version” or new different type of TPA drug? Is work being done in just Manchester University with that stuff? Or is there work being done in multiple places around the world?

    Bill Gasiamis 38:19

    And when you get to the end of your studies of your research of your current program, which is about 18 months away, you mentioned how quickly does that knowledge, that understanding, that new data, enable the next phase to occur? How long does it take to get to be used and adopted by hospitals and doctors around the world?

    Professor Stuart Allan 38:48

    My honest answer Bill is too long. So you know, one of the challenges in research is actually moving things more quickly along the pipeline, as we call it, we call it a translational pipeline. So basically, from the first discovery, to take it into, you know, early studies, and patients, and then trial, in that, and there’ll be no surprise for people to hear that that depends on several things, not least funding, because you’ve got to fund you have to do more research and to do more work needs money.

    Professor Stuart Allan 39:19

    The bottom line is you need money to pay the salaries of the scientists that do the work etc, to buy the drug or to do whatever you need to do. In that process. That process to secure money takes time. It takes a lot of time, because there’s not enough money. Basically, there’s not enough money out there to fund all the research that people want to do. So the process of getting money itself takes time.

    Professor Stuart Allan 39:44

    So you have to write an application to apply for money that can take sometimes a year, it can take a year to apply and get a decision on whether that project will be funded. So that’s a delay and then obviously then you’ve got to do the work. And you’ve got to then convince people that it’s, you know, it’s real, that you’ve actually got good evidence that this is a new drug, for example.

    Professor Stuart Allan 40:09

    And then you’ve got to take it along the pipeline of testing if it’s a brand new drug, it needs to go through very complex safety tests to show it’s not going to cause harm. And you mentioned dexamethasone, and some of the side effects, so you’ve got to be sure your drug is not going to cause harm, that counteracts any benefit, basically. So it takes a long time it can take many years, decades, to get a drug.

    Professor Stuart Allan 40:38

    But I think my hope is, the drug I talked about, they’re the one that’s a new clot buster could be quicker, because we think it’s another form of this drug has been tested in humans before so that suggests it’s safe to use. So it could be quicker, but it does depend on further research, of course, we need to prove we need to do more experiments to prove it works and it’s better than TPA.

    Professor Stuart Allan 41:12

    So it’s hard to predict it really is dependent on a bit of luck in terms of things happening, funding, and having the right people to do research. And that’s where the fantastic support the Natalie Kate Moss trust who kindly you know, have gone on as a legacy to Natalie, they’ve gone on to raise money to fund our hemorrhage research.

    Professor Stuart Allan 41:36

    And that’s been a really fantastic bonus to us. And it’s been really driven our research much faster, because they’re raising money for us basically to do research directly. So it cuts out the bit in the middle where you’ve got to write applications and wait for a year to get decisions. And you’re competing against all sorts of other applications to get funding.

    Bill Gasiamis 42:01

    It seems like a blinding flash of the obvious now when you say it when we can’t penetrate the blood brain barrier, but then we’ve got somebody’s head open. So while we’ve got it open, why don’t we access the area that we need to why don’t we put this particular drug in there?

    Bill Gasiamis 42:19

    And kill two birds with one stone so to speak. Well hopefully kill no one but, is that a gutsy move? Is that something that takes a long time for somebody to say, hey, why don’t we just put it in the hole you’ve already created? And see what happens? How they get to the point where they do that? Or has there been research on rodent populations, and then as a result, they get to this idea?

    Professor Stuart Allan 42:49

    The interesting thing is there’s been a lot of research in rodent models of stroke, where where drugs have been given directly to the brain, because obviously, you know you can do that or use more easily. But you can do it more easily in a rodent in a rat or a mouse than a human because, of course, you know, you’ve got to think about the cost benefit in a human and we’ve talked about that aspect in neurosurgery.

    Professor Stuart Allan 43:16

    And actually, we know these works and actually one of the problems people think because a lot of drugs have been shown to work in terms of stroke in animals, but they don’t work in humans. And the question is why? The reality is in the positions particularly the case maybe 20 years ago in the 90s is that the drugs often were tested in animals by giving it directly into the brain.

    Professor Stuart Allan 43:39

    And then they went into the trial where the drug was given into the blood in the patient and so of course there was no evidence to say that that drug in the blood then got into the brain. So the concept if you give it directly into the brain is going to have benefit is definitely true. So the question just is in humans how do you get that and how do you get drugs into the brain?

    Professor Stuart Allan 44:03

    And one way is through surgery that’s happening anyway. And people have thought about this obviously before not just me. And also there’s a lot of effort being done by research groups around the world to try and find clever ways to get things to try and move things better into the brain.

    Professor Stuart Allan 44:26

    And we’ve got some research we’re doing that same thing so you know, we’ve got some research, so liposomes are basically small packets, they’re basically carriers of drug and one of the Coronavirus COVID 19 vaccines uses the liposome to deliver it.

    Professor Stuart Allan 44:46

    So it basically is a little package that you can put drugs inside it or move around the body. And these are using cancer and actually we’ve got some evidence now that in stroke these liposomes get into the brain better they seem to access the brain after somebody has a stroke selectively.

    Professor Stuart Allan 45:07

    So that gives us the opportunity, we think to give to either attach a drug to the surface of that liposome or to put it inside so a little bag that carries the drug to the brain. So there’s lots of work to get done to try and do that.

    Bill Gasiamis 45:29

    That’s fascinating. So in the in the situation with the inflammatory response, right, so interleukin 1, there seems to be a benefit of interleukin 1. Is it beneficial? There seems to be a benefit to having the response where interleukin 1 is released into the area that’s been injured right?

    Bill Gasiamis 45:58

    And is it possible that when delivering this new drug to decrease the amount of interleukin 1 that you’re causing harm elsewhere? Is it possible that it’s doing too much of the reversal of interleukin 1 and therefore interfering with some other part of the healing response? Or the recovery response?

    Professor Stuart Allan 46:27

    That’s a really good question. Because obviously, interleukin 1 is what we call one of the main inflammatory cytokines. So it’s used to fight infection, for example, it definitely is. So one of the one of the questions we always get asked is if you stop this, if you give the drug interleukin 1 receptor antagonist, to stop a one action and do you cause more infections?

    Professor Stuart Allan 46:49

    Because you know, as a foreign example, there’s many trials being done in terms of use in COVID, it’s been used COVID and shown to be effective and COVID. The trial has been done, show that there’s a very slight, a very slight increased risk of infection, but it’s very low. And these are not common infections.

    Professor Stuart Allan 47:13

    And we’ve done some research here, Manchester, where we think that’s because actually, although interleukin 1 is important in infection, there are other mechanisms, the body has other ways to fight infection they don’t only need interleukin 1, so therefore, by blocking it to prevent damage, you’re not causing an increase in infection.

    Professor Stuart Allan 47:36

    Of course, you know, what we don’t know is, and this is, again, research we need to do is how long do you stop it working for? And that’s a question which is true of any pathway because inflammation, certainly what we know is in the stroke to brain if somebody has a stroke, because there’s definitely ongoing inflammation in the broadest sense, you know, there are what we would call inflammatory processes happening over many weeks and months, if not years.

    Professor Stuart Allan 48:07

    In somebody’s brain. And of course, the key question is, are these inflammatory processes actually trying to do some good? Are they trying to, you know, help the brain to repair to allow new connections to form to make the blood-brain body or better, and until you do the test of course, you don’t know that. So that that’s important.

    Professor Stuart Allan 48:33

    So the time you treat for is important. And that’s why we need more research to try and understand that situation. Of course, the advantage, we think of giving a an inhibitor. So at the moment, all we propose is if you stop interleukin 1 acting very early on in the first day, then that should be at least enough to cause a reduction in damage. So the question is you were only giving the drug for a short period of time.

    Professor Stuart Allan 48:55

    In the acute very acute phase.

    Professor Stuart Allan 49:08

    In the acute phase, and that has advantages in the prevents, it stops any potential side effects. It’s actually relatively cheap. So in terms of the health economics, because of course, any treatment that’s given to patients needs to be paid for and one of the challenges in health services across the world health providers is the cost of drugs can be very expensive.

    Professor Stuart Allan 49:32

    So actually, if you’re giving a drug only once or twice and it’s not an expensive drug, then of course that’s from a health economics point of view. That’s, good because it’s doable. But we are interested in ongoing inflammation in the brain. We’re also very interested in whether some of the things that happen early after stroke.

    Professor Stuart Allan 49:58

    So one of the things we definitely know what happens is when you have a stroke in the brain, the immune cells in the blood change, you know, so if you can imagine the immune system can tell there’s been a damage to the brain, and the immune cells become different they change the properties. We don’t really know why they change their properties. And what that means longer term.

    Professor Stuart Allan 50:23

    And we have funding now across several centers in Europe and North America, to try and understand that more, particularly in relation to and you talk to yourself, Bill about some of the problems you had thinking and just doing things that you normally did before your stroke, that you weren’t as good as doing it as you previously were.

    Professor Stuart Allan 50:44

    And that’s basically called, that’s what we call cognitive decline. You’re there’s there’s a cognitive change that people’s ability to process to do things, whether it be speaking, whether it be reacting to something, whether it be remembering becomes changed, only 30% of people who have a stroke will get cognitive decline. Some will get dementia, about 30% get dementia, and we don’t understand, we don’t know why to be honest, we really don’t know why.

    Professor Stuart Allan 51:14

    But we think, one hypothesis is that actually, some of these changes that happen very early to immune cells have a longer term consequence on the brain to cause changes in brain function. And the exciting thing is, of course, if you prove that, or you can demonstrate that’s true, then you can very early after the stroke you can intervene, and try and reverse these changes to then prevent the consequences of stroke happening.

    Bill Gasiamis 51:48

    I like that idea of early on having the intervention so that you can decrease the damage early on, because it’s early on, when all the damage happens really the first few hours of stroke. And as it remained untreated it’s getting worse and worse but that initial phase that sounds extremely promising, because then we are saving physically the brain in different parts, and we’re restoring function sooner, and that person’s getting back to health quicker back to society quicker back to work quicker back to the family, everything is impacted in a positive way, if we can intervene at the very early phase.

    Professor Stuart Allan 52:35

    We know I think this is a beautiful thing. Although stroke it does have devastating consequences on people. But the good news is there’s been real success in the last 20 years, you know, TPA does work, I think, you know, although we’re trying to find out a better drug that might help more people TPA does work.

    Professor Stuart Allan 52:55

    So TPA has really transformed outcomes in ischemic stroke. And people may be aware over the last three or four years, one of the biggest one of the biggest interventions that works is actually physically pulling clots out. So what’s happening now in many stroke centers across the world is they actually clots that are quite big, and maybe don’t get broken down by TPA, they can pull them out, they can actually physically retrieve them. A and that is whether that works, it’s highly successful, highly successful outcomes are incredible, you know, somebody can go from being really completely, you know, major defects to basically walk out the hospital.

    Bill Gasiamis 53:39

    Here with some certain I’ve interviewed stroke survivors who have had TPA and had interventions like that. And they they tell you, they’ve had a stroke, and it doesn’t look are you know, I’m going to use really terrible words, because I don’t like that. The thing I’m about to say, they don’t look like they’ve had a strike that an act like they’ve had a stroke they don’t tell you that I have deficits, like someone who’s had a stroke, like there’s nothing about them that suggests stroke yet.

    Bill Gasiamis 54:06

    They have actually had a stroke and some of the things that they’re left with some of those people might have some fatigue, or a little bit of, you know, memory issues or something minor that you would say, you know what, that is a great outcome for you, for any person who has an outcome like that, because we know what stroke can do. Everything goes right for that person, you know, they notice some symptoms, they get help they get seen immediately they get given the correct intervention immediately.

    Bill Gasiamis 54:36

    And you know, within a couple of hours, they are back to a level of health that they were very close to before the stroke instead of having nine months of rehabilitation, a lifetime of walking with left side or right side deficits and so on. So I love the idea that this is real the exciting to interview somebody who’s in your role, who does the kind of work that you do, because that’s the kind of hope that we stroke survivors are a waiting for.

    Bill Gasiamis 55:11

    We’re waiting for something to turn up. Because we know how devastating it is we actually a lot of the people who come on this podcast do to raise awareness. So that somehow, what’s happened to us, something good comes out of it, we can potentially help other people have had a stroke, recover quicker, have less impact from it, and so on.

    Bill Gasiamis 55:37

    So even though some of these drugs might not be beneficial to me, I love the idea of the fact that they’re going to be beneficial to other people, because we know that I think the World Trade Organization now has revised the number of people that will have a stroke in their lifetime to one in four from one in six.

    Bill Gasiamis 55:59

    It’s way too many people that are due to have a stroke in the future, it’s just something that I can’t even I don’t even want to think about. So knowing that, that there’s going to be more that we can do for those people, and hopefully, decrease the amount of negative impact. That’s really, really amazing, that’s really exciting and promising.

    Professor Stuart Allan 56:25

    I think it’s fantastic that people like yourself Bill, another stroke survivor, you do so much to raise awareness, because, you know, many of the things we talk about and are being researched, or, you know, it’s terrible to say are too late for people who have had a stroke, because many of these things are about early treatment. But, and I think that’s why we need to research to do that we still need research that’s going to bring better treatments.

    Professor Stuart Allan 56:52

    But we also need to do more research on trying to improve those things that are affecting people’s lives, quality of life. And you mentioned yourself. And actually you mentioned you know, what’s becoming pretty evident now, actually is more people survive, you know, survival rates now are much better for ischemic stroke. So though the major a changes that people will typically relate to so movement problems or speech problems, they’re being lessened because of the treatment.

    Professor Stuart Allan 57:26

    Actually, things like fatigue, and memory problems aren’t. So that in some ways, as scientists, we need to understand we need to turn this on why that is, you know, why is? Okay, so you’re getting blood back into the brain quicker, which is basically what TPA does and thrombectomy. So you’re getting a blood back into the brain.

    Professor Stuart Allan 57:44

    And that’s obviously helping to measure physical deficits. But actually, some of these more subtle, but yet really, really, you know, have major impact on somebody’s quality of life are happening. So the question for scientists is why that is, and fatigue is really one of these ones that stroke survivors often report is being one of the most debilitating things that happen, and we really have no understanding as to what fatigue is in terms of the brain function.

    Bill Gasiamis 58:15

    Yeah, I’m not sure if I’d be able to have a conversation with you about what fatigue is. And I love the nuance in that question, what is fatigue, but there seems to be a lot of work also being done by researchers around the world about the fact that fatigue might be linked to, a gut issue. So there’s an article that I’m reading right now it’s available on neuroscience news and research, I think, the website is technologyworks.com.

    Bill Gasiamis 58:56

    Anyway, there’s a group of American researchers who are looking at the possibility that stroke impacts the gut in a negative way. And restoring gut health could help save brain function. Or it could help minimize the amount of fatigue for example that somebody might experience now in my own personal experience, one of the things that I needed to do as soon as I realized that doctors were trying to decrease inflammation in my brain and they were doing it with dexamethasone, which was horrible.

    Bill Gasiamis 59:33

    I was on dexamethasone for about three weeks, and then had to be weaned off it. When I realized how horrible it wasn’t that I put eight kilos on in about two and a half weeks, that I wasn’t sleeping that I was having hallucinations, that my skin was crawling. I was eating about 4000 calories a day double what I would normally eat because it just made me ridiculously hungry.

    Bill Gasiamis 1:00:02

    I think it was dropped by my blood sugar did all these things. And when I realized that I wanted to not be on dexamethasone anymore, although I didn’t stop taking it, I did whatever doctors told me to do. I thought I’d look into ways that I think I did a Google search that was something like how to decrease inflammation in the brain. And one of the first things that came up was an anti inflammatory diet.

    Bill Gasiamis 1:00:30

    And what I thought was that the anti inflammatory diet was impacting my head. But what I know now, from, you know, what we spoke about with regards to the blood-brain barrier, the anti inflammatory diet wasn’t specifically doing anything to the head, what it was doing was decreasing inflammation in the gut. And as a result of that, I was having positive experiences on the neurological front.

    Bill Gasiamis 1:00:55

    And of course, I’m early on in this whole process, I don’t know what it means. I just know that when I’m not eating sugar, and when I’m not eating certain carbohydrates, like glutinous bread, like white rice, like, we call them soft drinks, you guys might call them sodas, when I wasn’t consuming food like that I was having the less fatigue episodes. And the more and more I got that out of my diet.

    Bill Gasiamis 1:01:26

    And the less I was spiking my insulin, the less I was having fatigue episodes, or they were less dramatic in the way that they impacted me in a negative way. So there is some weird well, it’s not weird. I mean, everything in our body is connected right, in some way, shape, or form. So there’s some amazing connection between how we can treat the gut, how we look after our gut.

    Bill Gasiamis 1:01:58

    And how that impacts our experience after a stroke, a neurological experience. And that is one of the only things that I found comfort from initially was because how do I take control of my situation a little bit? How do I control one part of this crazy thing that’s happened to me, the only thing I can do is control what I want to consume. And of course, the more I look into it, you know, there’s books by Dr. David Perlmutter who’s a neurologist.

    Bill Gasiamis 1:02:31

    There’s a whole bunch of other amazing people there’s this Grain Brain by another guy, like there’s this, there’s all these books, who that talk about how we can positively impact the the brain. But even though I know that it still doesn’t make sense to me after what we’ve just discussed, after the fact that nothing penetrates the blood brain barrier.

    Professor Stuart Allan 1:03:06

    I’m glad you’ve made this Bill, because I don’t want the listeners to get the wrong idea. So the blood brain barrier is a barrier, but it’s not a complete barrier. So things do get in. So things that the brain needs get in. So for example, you have to get glucose into the brain to get energy, and you’ve got to have oxygen to get into the brain, obviously, through red blood cells, and you need other nutrients.

    Professor Stuart Allan 1:03:31

    So you need other busy needs other nutrients to get into the brain to help the brain cells to work. So sorry, I made it sound like it’s a complete barrier. There are special mechanisms by which things get into the brain. So for example, any substance that is lipid soluble, so innocent it can be go into lipids into fat will get across the brain, into the brain very easily.

    Professor Stuart Allan 1:03:57

    And of course, it’s no surprise therefore, that certain dietary products, certain dietary things are absolutely essential to get into the brain to make the neurotransmitters I’ve talked about. So actually, the blood-brain barrier keeps out toxins and bad things. But it definitely lets in good things. And, I think the point you actually have nailed on the head, you know, the gut brain that acts is fascinating, because definitely got reacts to damage in the brain.

    Professor Stuart Allan 1:04:26

    And the gut barrier will break down, you know, obviously basically any lining of the body that is exposed to the outside world is a barrier because of course you need to keep things out. And what we know is the gut has, obviously a very important barrier. If that barrier breaks down, then it will change what gets into the body. So bugs will get into for example, you’ll get microbes come in, but also the ability to extract nutrients from foods becomes changed.

    Professor Stuart Allan 1:04:56

    So the blood-brain barrier is definitely basically a key gateway. So it is a gateway, it’s not a complete blocked off seal. And I think the argument you make is right, and there’s good evidence actually if you eat a diet that’s high, for example, in certain fatty acids, so they will get into the brain and they then help the brain probably to repair, you know, because you need, for example, if you, you know, the brain, most brain cells have myelin wrapped around the brain’s axons to make them work better.

    Professor Stuart Allan 1:05:35

    So, if you need to repair myelin, you need to get things into the brain to help to do that and make the cells work. So the key thing, I think, and think of it more simply is the blood-brain barrier, we need to promote the entry of things that are going to benefit brain function and keep out bad things.

    Bill Gasiamis 1:05:56

    Yeah, lovely. I love it. It makes sense. It’s a great conversation. It’s one that fascinates me. And that’s why I love having people like you on the program, a neuroscientist, who knows this stuff inside and out. It’s just one of my favorite topics, it’s just become one of my favorite topics. And you can understand why.

    Bill Gasiamis 1:06:21

    But as we come to the end of the episode, I know you’re a busy person, you’ve got a lot of things to do. And I want you to get back to your research. I am wondering if you can talk at all about the work that you might be doing or that you are going to be doing with the Melbourne University. So I’m very pleased to hear that you guys have some kind of a relationship, all the way from Manchester University, to Melbourne University. Can you tell me a little bit about that work?

    Professor Stuart Allan 1:06:53

    Yeah, absolutely. And it’s, you know, it’s quite exciting work. So it relates to inflammation. Again, you know, we’ve got a long interest in inflammation. And I mentioned before that one of the challenges in brain research is getting a window into the brain.

    Professor Stuart Allan 1:07:06

    So how can we tell what’s going on over time in the brain, in terms of different processes that might be good or bad after stroke. So what’s fascinating is if you look at the eye, okay, if you look in the eye, the eye is basically part of the central nervous system in terms of development. It’s part of the central nervous system, the retina, in the cornea.

    Professor Stuart Allan 1:07:32

    So with researchers in Melbourne, so some researchers in Melbourne, a Holly Chinnery and Laura Downey they work in the eye, they they’re their researchers who study the eye in terms of a disease. But actually, what they’ve also noticed is that if you, you can use the eye, and it’s a bit of a corny cliche, is a window to the brain. And they’ve got some evidence now that actually things that are happening in the eye, whether that be in the retina, or whether it be in the cornea, actually might reflect what’s happening in the brain.

    Professor Stuart Allan 1:08:08

    So you can use it as if you’d like as a measure of brain inflammation. And particularly they see some certain types of immune cell change in the eye and have shown that this is relevant to some Parkinson’s disease they’ve shown in people who get some cognitive impairment, there’s changes in the eye.

    Professor Stuart Allan 1:08:30

    So we basically are going to combine with a team in Melbourne to study and compare changes that are happening in the eye to changes are happening in the whole body, the changes are happening in the brain in terms of inflammation, and try and understand more about these responses across the whole organism over time.

    Professor Stuart Allan 1:08:52

    And it comes back to that time thing, that sort of temporal window of a stroke as an immediate event. And then there’s consequences that will go on for years, actually. And so that’s it. So it’s exciting. It’s very exciting research for us to use expertise in Melbourne to link it with our expertise in stroke.

    Bill Gasiamis 1:09:13

    It’s totally amazing. I’m blown away. I could go on and on but I won’t. Thank you so much for doing the work that you do. Firstly, you guys are the unsung unknown heroes in the background, your whole team, everybody who’s involved and all the other people involved in helping people who you don’t know who haven’t yet had a stroke in case they have a stroke.

    Bill Gasiamis 1:09:48

    I think that’s just fascinating thing to be doing in your life’s work. Like I think that’s just amazing. I just love that there are human beings doing that for other human beings they’ve never met before, in case they get sick. I love it. So thanks for that. Thanks for being on the podcast. I really appreciate your time. And yeah, just giving us an insight into that I think it’s going to be a really fascinating topic and something that the stroke survivors and their caregivers who are listening will take some comfort from.

    Professor Stuart Allan 1:10:24

    Thanks Bill for getting the chance to speak about research which I care so passionate about, and making a difference.

    Bill Gasiamis 1:10:31

    Thank you for joining us on today’s episode, I hope you learned something valuable and important. I certainly did. I absolutely love talking to the people who are behind the scenes doing work for people they’ve never met. And that they don’t know, in the hopes of giving them a better result in case they have a hemorrhagic or an ischemic stroke. I mean, it’s just fascinating and amazing that people choose to do that and I’m grateful for them.

    Bill Gasiamis 1:10:59

    And I probably have, and many of you listening have already benefited from people that have devoted their lives to making our recovery, and the seriousness of the condition that we had to deal with less impactful, it’s just unbelievable. So I hope you got a lot out of it, and you can tell how much I got out of it. To learn more about my guests, including links to their social media and other pages.

    Bill Gasiamis 1:11:32

    And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke.

    Bill Gasiamis 1:11:53

    If you’re a stroke survivor with a story to share about your experience come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor, or care for someone who is a stroke survivor or be one of the fabulous people who help other stroke survivors.

    Bill Gasiamis 1:12:12

    Go to recoveryafterstroke.com/contact fill out the form and as soon as I receive it, I will respond with more details on how you can choose a time that works for me and you to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.

    Intro 1:12:31

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

    Intro 1:12:48

    All content on this website at any length blog, podcast or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, 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 1:13:10

    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 1:13:32

    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 medical information changes constantly.

    Intro 1:13:52

    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 Reducing Inflammation In The Brain After Stroke – Professor Stuart Allan appeared first on Recovery After Stroke.

    1 hr 15 min
  • KRUSH: ER & The Strokes – Keith “Krusher” Rush

    Keith “Krusher” Rush experienced several strokes at the age of 27 which caused significant deficits. He wrote a book that he hopes will help cover some of the medical bills he and his mother need to cover.

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    KRUSH: ER & The Strokes

    Highlights:

    00:54 Introduction

    02:52 Keith “Krusher” Rush Had An AVM
    10:34 Life After Stroke
    17:13 KRUSH: ER & The Strokes
    23:04 Life With Humor
    28:36 Wrapping Up

    Transcription:

    Keith “Krusher” Rush 0:00

    It’s about me and my mother, when I was disabled my mother was my caretaker she took care of me. Nowadays she’s kind of disabled, she doesn’t want me to put her business out there like that, but she is on declining age every day I’m the one that has to take care of her now.

    Intro 0:42

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

    Introduction – Keith “Krusher” Rush

    Bill Gasiamis 0:54

    Hello and welcome to episode 229 of the recovery after stroke podcast. My guest today is Keith “Krusher” Rush, a survivor of multiple strokes, age 27 who is living with deficits that limit his mobility and make it very difficult for him to hold down a job.

    Bill Gasiamis 1:12

    With his mum in ailing health, Keith has had to find new ways to earn a living. And he joins me on the podcast today to tell his story and promote his first book titled KRUSH: ER & the Strokes. You can get a copy on Amazon and it’s available in paperback and on Kindle.

    Bill Gasiamis 1:33

    Please listen to the interview to the end and if this interview moves you and you can manage 12 US dollars please purchase a copy of the book. All funds go to support Keith and his mum cover some of their medical bills. To learn more about Keith including links to his social media and the Amazon link where you can purchase the book.

    Bill Gasiamis 1:55

    And to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes and if you are watching on YouTube, you’ll find all the links to Keith and the link to the book in the description of the video below. Keith “Krusher” Rush welcome to the podcast

    Keith “Krusher” Rush 2:19

    Thank you sir I’m right here I’m waiting on you buddy.

    Bill Gasiamis 2:23

    Thanks for being here man. You overcome some most massive challenges. We couldn’t work out the audio. We couldn’t work out the video at one stage but we made it we got here and I’m glad to have you here. Tell me Keith a little bit about what happened to you man?

    Keith “Krusher” Rush 2:39

    Well first of all Bill you’re a wild one I’m wild too.

    Bill Gasiamis 2:49

    I’m gonna be Wild Bill, I’m Wild Bill am I?

    Keith “Krusher” Rush Had An AVM


    Keith “Krusher” Rush 2:52
    You’re Wild Bill, okay I’ll give you a brief tale about me. I have three strokes, I had an AVM arteriovenous malformation, a stroke on the brain at the age of 27, now 13 years later I’m 40 and I just wrote a book called KRUSH: ER & The Strokes. Wherever you get the book platform and everything, it’s all the way live.

    Bill Gasiamis 3:45

    We’re gonna talk about it in a minute, we’re gonna talk about it. So you had an AVM you were 27 years old, and the AVM ruptured and bled and as a result of that you ended up in hospital?

    Keith “Krusher” Rush 3:59

    Well I was already in the hospital. I had one stroke one week. And they couldn’t find out what was goin on. Then I had a second stroke, they found it in my MRI and by the time I had the third one I was already in the operating room table.

    Bill Gasiamis 4:31

    Okay, so you were in the right place to have this other situation.

    Keith “Krusher” Rush 4:43

    Then I had the strokes there.

    Bill Gasiamis 4:46

    Right. And then they opened up your head to remove the arteriovenous malformation right? To get rid of it. Yeah.

    Keith “Krusher” Rush 4:53

    Yeah that’s right I don’t know what happened if they got rid of it or they untangled it because it was a big tangle like a golf ball size. And what they did was they had to go in to untangle it. But it leaked 2.1 centimeters of blood on the brain. Yeah. So, you know, I had the third stroke. The third stroke was there on the operating room table.

    Keith “Krusher” Rush 5:09

    I was in a coma for about four and a half months. I was in the hospital for about seven months. I did tell it in my book though. I tell all about everything, about my diagnosis, and everything there’s Krush ER and The Strokes. It’s the highly anticipated book that just came out this month shout out to the publisher EBL books, they published my book and everything. So we got it rolling and got it going.

    Bill Gasiamis 6:31

    Okay, let’s talk about that. So you have a publisher. And they’ve supported you to put this book out. Your book is about recounting the story of the strokes and what you went through and what you overcame, right?

    Keith “Krusher” Rush 6:49

    Well, yeah, my book is about recounting recovery after stroke. But it’s not necessarily just bad. It’s about me, and my mother.

    Intro 7:03

    If you 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 7:21

    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 7:43

    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

    Keith “Krusher” Rush 8:03

    When I was disabled my mother was my caretaker, she took care of me. Nowadays she’s kind of disabled she doesn’t want me to put her business out there like that but she’s on declining age everyday. And I’m the one that has to take care now.

    Bill Gasiamis 8:41

    Okay, so your mom was looking after you but her health has declined because she’s older.

    Keith “Krusher” Rush 8:47

    Yeah she looked out for me when I went through it, now I’ve got to return the love and look out for her as you see I was just trying to figure out some kind of way possible to make some money because right now it’s hard everywhere across the world. But I was just trying to make a little money and everything and so I had a good idea to tell my story once I got the writing on that one that should go down the road for me finding some other stuff, that’s to be continued though.

    Bill Gasiamis 9:40

    So what you’re doing is you’re supported by mom, mom’s health is not the best because she’s aged. And now you’re returning the favor. You want to look after your mom and help raise some money and help support your mom and yourself.

    Bill Gasiamis 9:41

    So you wrote a book, in the hopes of selling the book, so that you can raise some money to go towards your medical bills and daily cost of living and all the usual things that are related. And you’re a stroke survivor. But let’s talk about your situation. You’ve overcome stroke to an extent, but you’re also living with what it did to you. So tell me a little bit about your situation. How are you able to get around? What deficits hasn’t left you with?

    Keith “Krusher” Rush’s Life After Stroke

    Keith “Krusher” Rush 10:34

    Well, I was 27 years old in the bottom of my career when this happened, I was thriving and surviving basically all in, I guess I was just young and doing my thing and I was really stubborn, I had my own house, I have my car, I have my job.

    Keith “Krusher” Rush 11:09

    And next thing you know, I have the stroke. But I’ve been living with this stroke for 13 years now. And because of that, the cause of living with it. I didn’t even think I was gonna make it past a certain age cause like I said, I was 27 when they happened I’m 40 now now so there is life after stroke.

    Bill Gasiamis 11:41

    Yeah. Tell me about your challenges. What challenges do you need to overcome every day? Are you physically mobile? Are you able to work what’s the situation?

    Keith “Krusher” Rush 11:53

    I’m not able to hold down a full-time job because I have constant fatigue and everything. And so beause I get so tired easily, I’m not able to hold a full-time job. That’s what my daughter told me but I have a wheelchair it’s a motorized wheelchair to get me around because if I do for a long period of time I get tired.

    Bill Gasiamis 12:39

    Working is difficult and therefore you can’t earn steady income?

    Keith “Krusher” Rush 12:47

    I can’t earn a steady income so I figured why not just write? So I’ve been writting since the pandemic in 2020 so I’ve been writing over the last two years. I can get around from A to B in my wheelchair. But it doesn’t last really. I need some help, I need like more I guess financial help with stuff and I need to take care things for me myself and I and my mom. You know I just got bills bills bills. They’re all around.

    Bill Gasiamis 13:58

    Tell me about your your home life so you live at home with your mom at the moment?

    Keith “Krusher” Rush 14:04

    My mom lives with me. She lives with me for about 10 years or so. She lives in my house. So basically she stays with me and everything. I have the have I guess 24-hour care because she is fixing my medicine. It’s just the daily cost of living that’s a burden for us. Man I swear, healthcare is crazy in the United States, but I don’t wanna dwell on the bills too much. I know we just signed the bill over in the United States, pharmaceutical bill and everything. But that doesn’t get to me until the beginning of the year.

    Bill Gasiamis 15:29

    Okay, so you’re at home, you’re not working. You have a lot of medical bills.

    Keith “Krusher” Rush 15:37

    Well I am working, I’m earning cheques by writing these books.

    Bill Gasiamis 15:44

    Yes, yes, but you’re not working a traditional job. And you’re caring for your mom at the same time. She’s also trying to care for you. But her health is failing a little. And, now you’re in a wheelchair because of the stroke so you can get around and you can achieve most things that you need to achieve on a daily basis.

    Bill Gasiamis 16:11

    But you guys together you guys need some support. You need to raise some money. You need to become financially independent or work towards that. And you’re writing the book in order to support you and help you with that.

    Keith “Krusher” Rush 16:25

    That’s right. Well I’m just gonna say, speaking on behalf of my mother she doesn’t like the business idea, but I do you know when I say that we need help, I must say my mom is a proudful she is very proudful. I am too at a certain extent though. Because when you need something you need it.

    Bill Gasiamis 17:03

    Yeah. Tell me how old is mum?

    Keith “Krusher” Rush 17:06

    I think she just turned 65.

    KRUSH: ER & The Strokes


    Bill Gasiamis 17:14
    Okay, so you have written a book, it’s been a bit of a challenge. Mum is not necessarily keen on this kind of request for support, in this way, she’s a very proud woman. But you definitely have, I think, in my opinion, a great idea here. Because the books going to be useful for other people, it’s going to be helpful for other people. And it’s going to also support you guys and be helpful and useful for you guys.

    Keith “Krusher” Rush 17:42

    That’s right, I’m gonna do whatever to me is necessary to support me and my mama.

    Bill Gasiamis 17:50

    Beautiful. And you’ve already overcome so many obstacles. Well, all the stroke obstacles, all the other challenges you’ve written a book, you found a publisher. You’ve published it. It’s now live on Amazon. You got an awesome cover. And basically I’m going to hold that up to the screen right now. That’s the cover, that’s what the book looks like.

    Keith “Krusher” Rush 18:15

    That lady in the picture. I don’t know who she is. But that’s my Cinderella right there if you notice in the top right-hand corner shout out to my Cinderella she was a lady by the name by Gabriella. Let me tell you a story real quick.

    Keith “Krusher” Rush 18:41

    When I was in the hospital, I was unconscious coming back from my coma you couldn’t say nothing to anybody but you can hear what people whispering in your ear. And a lady by the name of Gabriella came up to me whispered in my ear and I saw her walk away. And next thing you know she turned around and was looking back at the time. I swear she was my Cinderella, she is my Gabriella whoever she is, if anybody knows her, have her to read out to me.

    Bill Gasiamis 19:42

    What’s her name again?

    Keith “Krusher” Rush 19:45

    I think her name is Gabriella. I call her my Cinderella

    Bill Gasiamis 19:53

    Gabriella your Cinderella. Okay, so she’s made it onto the book cover, you’re in the book cover.

    Keith “Krusher” Rush 19:59

    She’s made it on to my book cover and she would just holler at your boy that’s all she got to do let me do the rest of the talk. I just wanna talk to her and get to know her a little bit so whoever she is, Cinderella, Gabriella, whatever it doesn’t matter I’ll know who she is when I see her, I just gotta see her one time. But that’s her on my book cover.

    Bill Gasiamis 20:39

    Okay, so the book is available is it a hard copy? Or can you just get it on Kindle at the moment?

    Keith “Krusher” Rush 20:46

    You can get it everywhere with books available. You can go to Amazon, eBook, Kindle, book stores. I believe it’s coming in paperback, it will be available in whatever book stores you go just ask for KRUSH: ER & The Strokes. It’s a funny thing they came out to my name too. My name is Keith Rush okay we’re gonna call it KRUSHER you put the K in the RUSH and you add ER.

    Bill Gasiamis 22:03

    Okay. Now I know how that happened. Awesome. Well, it’s an awesome name. It’s an awesome cover. I want to read a little bit about what Amazon says about the book.

    Keith “Krusher” Rush 22:14

    It tells my whole diagnosis. It’s about 55 pages, 10,000 word memoir.

    Bill Gasiamis 22:26

    Nice, nice. So this is what it says on Amazon. It says Keith “Krusher” Rush’s memoir recounts the trials and triumphs of a young man who suffered a stroke in his late 20s and must rely on his mother for care. The Account provides insight into the difficulties he and his mother have had to face to make ends meet and survive. Rush approaches his life story with good humor and optimism without shying away from addressing the more distressing parts of his life. That’s what it says on Amazon about your book.

    Life With Humor

    Keith “Krusher” Rush 23:03

    You know you have to approach every day with humor man, you just got to laugh to keep you from crying sometime. I had a cry for one day, one-day ever since the stroke. I’d cry about me but I had no pity for me, I wasn’t pityful. Faith without words is dead. You know what they say? And I’m not dead, I’m still here. So tell the Devil or whoever. Ha ha.

    Bill Gasiamis 23:56

    Yeah. You’re, approaching life with humor, you’re just doing life, you’re just looking forward, you’re not feeling sorry for yourself, you’re just getting things done, you’re publishing books, you’re naming me you’re giving me a name a Wild Bill. I mean, it’s awesome.

    Keith “Krusher” Rush 24:15

    Wild Bill that’s right.

    Bill Gasiamis 24:17

    I love it, man. I absolutely love it. So what we’re going to do is now we’re going to tell people what we want them to do. So anyone who’s listening to this podcast, what we would like them to do is go to amazon.com. When you go to amazon.com you’re going to type the words, Keith “Krusher” Rush, that’s the author’s name.

    Bill Gasiamis 24:51

    That’s going to bring up the title of the book. It’s going to bring up KRUSH: ER & The Strokes, the awesome book is going to look like this. That’s the cover of the book right there. And for $4.12, you can buy the Kindle version, it’s less than a cup of coffee.

    Bill Gasiamis 25:13

    And most people buy two or three coffees a day. So if you go to amazon.com, and you type in Keith “Krusher” Rush, and you see the book and you buy the book, that money is going directly to help Keith and his mom pay their medical bills, correct.

    Keith “Krusher” Rush 25:34

    That right I’m just trying to think of something creative. I was thinking outside the box, what I should do. I know that you know, my mother doesn’t want me to be in her life. To be in pain but people need to know people need to hear people needs to know my story. And that I’m out here I’m not begging, I’m just earning a right. I’m just earning a living, where it’s not is not come get me come get your boy. I’m just out here trying to get in.

    Bill Gasiamis 26:38

    Lots of people writing books. And the whole purpose of writing a book is to sell it. It’s got nothing to do with begging. It’s got to do with earning a living and you’re doing exactly what everybody else does. They write a book, they put it online for sale. And then they wait for people to buy it.

    Bill Gasiamis 26:55

    And there’s nothing wrong with that, man. That’s exactly what everybody else does. Who’s ever written a book, it’s about telling a story but also it’s about turning a profit if possible. And your cause is an awesome cause you want to be independent to support your mom so that you guys can pay your bills and go about life.

    Keith “Krusher” Rush 27:17

    That’s right, you got the right story Wild Bill.

    Bill Gasiamis 27:22

    I am, I’m writing a book. It just takes a while you know, it takes a long time Keith to write a book, I am writing one and I’ll get it out there one day. But for right now it’s about you, we want to make sure that we get your story out there and we tell people about your book. So that’s exactly what we’re doing. And I’m going to share the link of your book and it’s gonna make sure that people can go and have a look at it and buy it and support you.

    Keith “Krusher” Rush 27:52

    I want everybody in my family I’m gonna give a shout-out to everybody in my family I just want them to believe in me, believe on what I’m doing and see what I’m doing I’m not trying to tell anybody or nothing. I’m just trying to make something happen and be creative.

    Bill Gasiamis 28:25

    Make something happen instead of waiting around for things to happen you’re being actively involved in trying to make something happen.

    Keith “Krusher” Rush 28:32

    That’s right you already know man.

    Wrapping Up


    Bill Gasiamis 28:35
    Yeah, I love it. So man, thank you so much for joining me on the podcast I am going to let people know about this people will support it and we’re looking forward to hearing about the hardcover version which is going to be a little later on down the track.

    Keith “Krusher” Rush 28:55

    Yeah that’s why I only get a couple of dollars on royalty because I might not let the cat out the bag yet but you go beat him for me again really. I’ve got a couple of other projects at work and now everything is in the process right now.

    Bill Gasiamis 29:25

    Yeah, so your publisher is supporting you with this right?

    Keith “Krusher” Rush 29:28

    They are, EBL books. I forget the editor’s name but I EBL books. They come through for me. They’re working it out for me.

    Bill Gasiamis 29:54

    Awesome man EBL books. So, Keith, thank you so much for connecting with me. Reaching out thanks for doing what you’re doing. Thanks for looking after your mom and supporting her.

    Keith “Krusher” Rush 30:03

    Yes sir, and shout out to my girl Chrissy Mathews she’s helping me out. She told me about your podcast. And I said I need to jump on it immediately. I need to jump on right away. I think it was on Thanksgiving.

    Bill Gasiamis 30:36

    Yes. So that’s Chrissy Matthews, your friend?

    Keith “Krusher” Rush 30:39

    Chrissy Matthew she’s a friend of mine, I’ve called my sister aid. She lets me know by ear for now. She’s my right hand lady.

    Bill Gasiamis 30:54

    Okay, Chrissy Matthews, thank you for putting me in touch with the “Krusher” over here. We’re gonna raise some awareness, we’re gonna get this out. And we’re gonna see if we can sell a few copies of this book.

    Keith “Krusher” Rush 31:08

    I can do what they do brother.

    Bill Gasiamis 31:11

    All right, well, you keep in touch. Let me know when the hardcover is when the print version is available. In the meantime, we’ll let people know about this book, and we’ll let people know about how they can support you. And we’ll see if we can maybe sell a few copies. We’ll see if we’re going to be able to do that.

    Keith “Krusher” Rush 31:40

    Sounds like a plan to me Wild Bill.

    Bill Gasiamis 31:43

    Awesome mate. Well, thanks for the new name as well. I really appreciate it.

    Keith “Krusher” Rush 31:48

    Alright, no problem sir.

    Bill Gasiamis 31:53

    High five man, high five. Thank you all the best!

    Keith “Krusher” Rush 32:00

    I love you already Bill and I don’t even know you.

    Bill Gasiamis 32:05

    Thanks, man. I love you too. I love your passion. I love your energy. I love your creativity. I love the way you’re just taking it on man, and you’re just going for it.

    Keith “Krusher” Rush 32:17

    You already know bro. You the man Wild Bill.

    Bill Gasiamis 32:25

    All right. Keith thank you, man. Thanks for being on the podcast. Well, thanks again for joining us on today’s episode. I hope you enjoyed this episode. I certainly did. “Krusher” is an amazing person. He made me laugh when he renamed me and gave me the name Wild Bill. If you can play support the crusher, if you can, our royalties from his books will go to covering his mum’s and his medical costs.

    Bill Gasiamis 32:54

    So that will be a really amazing thing if we can help support him in a little way. This is exactly why I do the podcast, I love the opportunity to promote people’s books and give people shout outs and plugs. And this is one of the first times I’ve asked for somebody to be supported like this. And I hope that you will consider it because it is a really important cause.

    Bill Gasiamis 33:20

    And I think it’s going to make a massive difference to supporting the stroke survivor. And if we can, that’d be great. Now if you’d like to support this podcast, the best way to do that is to leave a five star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice.

    Bill Gasiamis 33:46

    If you’ve subscribed on YouTube, be sure to hit the notifications bell so that you can get notified of future episodes. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier, that may make a massive difference to their recovery.

    Bill Gasiamis 34:06

    And that will support them to feel better about the journey that they’re on and overcome some of the struggles that they are challenged with. If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor care for someone who is a stroke survivor.

    Bill Gasiamis 34:35

    Or you are one of the fabulous people that help other people who are stroke survivors. Go to recoveryafterstroke.com/contact Fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next Episode.

    Intro 35:01

    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 35:18

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

    Intro 35:40

    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 35:55

    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 triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 36:20

    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 KRUSH: ER & The Strokes – Keith “Krusher” Rush appeared first on Recovery After Stroke.

    37 min
  • Overcoming Multiple Hemorrhagic Strokes & Brain Surgery – Kyle Johnson

    A hemorrhagic stroke at age 33 and 3 additional bleeds in the brain at 34 seriously challenged Kyle Johnson. Listen to his story of recovery.

    Instagram

    Highlights:

    01:44 Introduction

    02:47 Pontine Cavernous Malformation
    09:24 Getting Into Surgery
    15:19 Dealing With Self-Esteem After A Stroke
    23:10 Being Able To Walk Again
    30:22 Exposure Therapy
    34:45 It’s Okay To Offend People
    43:24 Self-Awareness
    50:16 Stroke Humor
    57:31 Life Before The Stroke
    1:03:22 The Perpetual Pirate
    1:11:19 Falling Out?
    1:25:18 The Recovery After Stroke Podcast

    Transcription:

    Kyle Johnson 0:00

    The first one I got the nickname in the hospital of a really bad word idiot because I actually drove myself to the ER because I was home with my son alone. Like I went home I fed the dogs drove myself to the ER with an eyepatch on like I do these days, and it was just a bad thing.

    Kyle Johnson 0:19

    And I developed these tics that you would notice I’d rub my hand my thumb across my forehead because right down the center, I could feel a difference. Or I would raise my hands up above my head all the time to make sure I still could, because that was one of my symptoms was I couldn’t raise my hands above my eyeline. So I developed the nervous habit of constantly raising my hands above.

    Intro 0:51

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

    Bill Gasiamis 1:04

    Hello, and welcome to episode 228 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages and to download a free transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

    Bill Gasiamis 1:21

    If you would like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video. Like this episode, and to get notifications of future episodes, subscribe to the show and hit the notifications bell.

    Introduction – Multiple Hemorrhagic Stroke

    Bill Gasiamis 1:44

    My guest today is Kyle Johnson who experienced a brain hemorrhage at age 33. Three brain hemorrhages at age 34. And then brain surgery, Carl has overcome a lot and is still dealing with some of the things that stroke has left with him. Kyle Johnson, welcome to the podcast.

    Kyle Johnson 2:04

    Thank you for having me Bill. I appreciate it.

    Bill Gasiamis 2:06

    My pleasure. Thank you for reaching out and being on the podcast. You are somebody who I can relate to a lot because one of the questions that I asked people about before they jump onto the podcast just to determine that there’s some kind of a stroke survivor is what kind of stroke did you have? And when did you have it? And how old were you at the time? And you’ve got here you were 34 times three? And then surgery at 34? And they’re all hemorrhagic strokes. Tell me a little bit about what happened to you?

    Kyle Johnson Pontine Cavernous Malformation

    Kyle Johnson 2:48

    I didn’t know any of this, obviously, until I was 33. But I was born with what’s called the pontine cavernous malformation of the brainstem. I don’t think they could have made it any harder to say or pronounce remember, but they did.

    Kyle Johnson 3:03

    So when I was 33, pretty much what happens. What I understand, I’m sure someone out there is going to correct me if I’m wrong, is the blood vessels I like to call it they get really close and they hug really tight and then they explode.

    Kyle Johnson 3:17

    So inside my brainstem, I had one of these malformations, and it just started bleeding one day. And so that was in, I think it was July of 2016 was my first one. And then I had three more in 2017. I was 10 months, 13 days later was my first one.

    Kyle Johnson 3:40

    And then a couple of weeks later, or sorry, two months later was my third one. And then I’m not sure that between my third and my fourth one ever really healed. And then fourth one is when he got really bad where, I couldn’t move and I was just constantly throwing up blood.

    Kyle Johnson 4:00

    So I got rushed to the ER for that one. And of course, you know, all the nurses and everybody, they already had my bed made up and they knew me and their ICU at that point because I’d pretty much lived there. And then they put me in pretty much a chemical-induced coma for about a week while they figure out what they’re going to do.

    Kyle Johnson 4:18

    And what they ended up doing was a week later, they cut me down the back of my neck and took out a piece of my skull, put a tube in there, cleaned everything up on the inside, pulled it out, put a piece of titanium in there and sewed it back up and sent me on my way. So yeah, those 18 months were give or take 18 months are pretty wild to say the least.

    Bill Gasiamis 4:44

    Yeah, you bring back so many memories, not pleasant ones. Oh my god. I had a bleed in Feb. 2012 in March 2012 in November 2014 And then Brain surgery in November 2014. And it’s kind of the same thing they sort of said to me, it may have never really healed and that’s why it continue to bleed out.

    Bill Gasiamis 5:11

    And mine wasn’t a cavernous malformation. Mine was an arteriovenous malformation, which is just in a different location, but it’s a similar kind of thing. And I didn’t find myself particularly doing the anxious thing of worrying what about the next one?

    Bill Gasiamis 5:29

    Or if I have a next one, but what I did do was I did do the whole is this another one for many years? Because I was having weird sensations, feelings, etc. Did you have the whole is this another one? And then you were well, surprised or whatever to find out that in fact, it was. How did that happen?

    Kyle Johnson 5:56

    It’s actually a question I get a lot was, you know, knowing what the first one felt like because the first one I got the nickname in the hospital of really bad word idiot, because I actually drove myself to the ER, because I was home with my son alone. Yeah, exactly. I like I went home, I fed the dogs, I drove myself to the ER with an eyepatch on like I do these days, and it was just a bad thing.

    Kyle Johnson 6:22

    And I developed these tics that you would notice I’d rub my hand, my thumb across my forehead, because right down the center, I could feel a difference. Or I would raise my hands up above my head all the time to make sure I still could, because that was one of my symptoms was I couldn’t raise my hands above my eyeline.

    Kyle Johnson 6:46

    So I developed the nervous habit of constantly raising my hands above my head, because I was always scared that it was going to have it again. And so much so that one of my buddies and I got together. And he’s a back end programmer.

    Kyle Johnson 7:03

    And we built an app this is not a plug or anything, because it’s not available anymore. But it was for me, where it was an application where it could go in there and make it sit on the phone to say, hey, every duration of time, like two hours or an hour, you have to push something on your phone, like a medical alert to say, yep, I’m still alive, right.

    Kyle Johnson 7:27

    And if you didn’t push the button or acknowledge it, it would give you a countdown. And then if you didn’t do it, still, it would then reach out through text message through people you set as your contacts and show them like, Hey, Kyle needs help this is there’s last known location from GPS on the phone.

    Kyle Johnson 7:46

    That’s how nervous I was. Because I was, you know, I think you’ve been through it, you know, it’s a scary situation. When it actually happened again, it was of course, a bunch of denial, where I was downstairs doing something and I was sort of feeling really weird.

    Kyle Johnson 8:07

    And I was like, I’m just really hungry, right? It’s like, ran upstairs and started eating. And the best way I could describe it was that I was the balloon and the water. So I was a water balloon. And somebody took a needle and just popped the balloon.

    Kyle Johnson 8:24

    And this felt like rushing water out of my body. And that was the strongest indication besides my eye because it did fix itself the first time and then it just stayed. But so that was a really strong indication for the second one. And then the third one was just, I was really dizzy and didn’t feel good.

    Kyle Johnson 8:47

    So I called up the doctor. She’s like, yep, come in. And I was like, are you sure? And I remember her response was you’re bleeding through your brain. You, might want to come in. I was like, Okay, because, as you know, it’s kind of expensive.

    Kyle Johnson 9:03

    And then the last time was, I’ve been thrown off. I couldn’t lay flat or sit up. So if I did any of those movements, I would automatically throw up and I just started throwing up blood a lot. And I called my buddies and he came and picked me up. And I’m glad to say I didn’t vomit in his car the whole time.

    Kyle Johnson Getting Into Surgery

    Kyle Johnson 9:24

    Huge win for me. And part of that was, well, we got to the hospital and they’re just like, you’re back. I was like, Hey, guys, I just missed you so much let’s go. So yeah, it was trippy. And I know I’m sure you felt this too it was one of those where you want something to be done so bad about it because you have no life at a certain point.

    Kyle Johnson 9:48

    But at the same time, you want to be invited to the dance, which you don’t want to go. So when they’re like hey, we’re going to do surgery. It was like a sigh of relief but at the same time like oh my God, what is actually happening type of situation?

    Bill Gasiamis 10:05

    That was scary. I remember exactly that third time I was avoiding the surgery, you know, we can probably get away, can we get away with it? Can we get away with it? And third time my surgeon came in and said, We have to go in now.

    Bill Gasiamis 10:19

    And she said, are you up for it? And that was a sigh of relief yes let’s get it done and dusted. She came back and checked up on me the second day and said, Are you still on board with surgery? And I said, Well, yeah, I’m on board I am.

    Bill Gasiamis 10:35

    And I wasn’t confident that I didn’t respond confidently, but I was. And then we went through all the pre op procedures, and the pre op procedures included, you know, going into get assessed for surgery. So it’s a different kind of assessment.

    Bill Gasiamis 10:51

    And then the day of that assessment, which was about less than a week before surgery, as we were leaving the hospital, and we’re going through the emergency area exit or whatever it’s called the ER. I started to feel, all my left side just just go in my eyes, I couldn’t see and I was freaking out, and I was really scared.

    Bill Gasiamis 11:20

    And I said to my wife, I’m experiencing all of this stuff right now. And we cannot leave, we’ve got to go back to the ER and get somebody to look at us. And I’ll remember, we’re heading to my parents house. And they were just waiting for us to go for dinner.

    Bill Gasiamis 11:36

    And we rang them and said, something’s wrong, we have to stay here, we’re not leaving. Anyway, I’ve got cleared after about another three or four hours and it was, you know, well into the late hours of the night. And then we got sent home. And then a week after was surgery now what made it even worse for us, and I’ve mentioned that on a couple of previous podcast episodes is that my mother in-Iaw had passed away and been buried literally a week before that.

    Bill Gasiamis 12:06

    So we were just at our wits end, like we didn’t know what the hell was going on. And my wife broke down on the way home in the car, crying and having just a panic attack about what the next few days are going to be like, and what’s going to come of it, what’s going to happen. So it’s pretty safe to say that I was relieved one moment, and then I was shitting myself for the rest of it.

    Kyle Johnson 12:32

    100% Yeah, I mean, I don’t remember a lot of the week in between that what you’re saying is 100%, right. And it’s just one of those situations where it is relief of like, alright, they’re gonna attempt to at least do something. But at the same time, because I wasn’t coherent to a certain point, right?

    Kyle Johnson 12:57

    It’s all this stuff that they’re talking at you and with your family and stuff, like, well, he could die, or this or this or this right. I don’t remember a lot of that piece. But I do remember the emotions that came with it. And I do remember the feeling of I don’t know if the word is dread or despair. But, you know, you’re adults, your parents, your significant other, your caretaker at the time is there.

    Kyle Johnson 13:30

    And, you know, you it’s a hard situation to kind of wrap your head around unless you’re in that situation, which I want to be very clear. I don’t wish that upon anybody, because it is asstastic situation to be in. Just, it’s not fun. So yeah, it’s been, it’s been a journey. And I think, it’s taken me, I guess five years, almost six years, to be able to at least open up a little bit more about it in general.

    Kyle Johnson 14:02

    Just because I don’t know about you, but like, I was mad for a long time, I was upset with my body. I was you know, the whole like, why me situation and genetics thank you so much for that one. But, you know, it’s hard to kind of wrap your head around. And, you know, I have more respect for my wife than I probably ever could.

    Kyle Johnson 14:25

    She’s done more for me than any other human. She’s what I call my superhero without a cape, we’ve been together 23 years now. And she’s, she’s been there through all of my stuff and all the ups and downs and yeah, it’s a weird situation. So I can see that 100% of just that feeling of what is going to happen?

    Bill Gasiamis 14:59

    Only one way to find out is get through and somehow see later, like, if you have the opportunity to just see what comes of it. I mean, that’s not a shallow conversation. You can’t just say, Oh, let’s see what happens. Well, it’s actually really deep.

    Dealing With Self-Esteem After A Stroke

    Bill Gasiamis 15:19

    But that’s kind of where it starts, it starts Oh, well, let’s just see what happens tomorrow and the next day, and then in three months, and then six months, and then we’ll see what continues to happen. Tell me a little bit. Let’s go back to that section, where you said that you didn’t like yourself. So what specifically about yourself, didn’t you like? What were you angry at?

    Kyle Johnson 15:43

    I felt like my body betrayed me. In a way. You know, we’ve been working out a lot doing the healthy thing. And I always joked that I was probably in the best shape of my life. So now I joke where I’m like, I don’t want to be, I’d rather be in the middle most shape of my life, just to deter some of these chances again, because inadvertently, they found a second malformation when they were doing the surgery.

    Kyle Johnson 16:09

    So there is a second one in there. But I get MRIs and everything, nothing’s going negative so far. So high five on that one. But from not liking myself, it was a piece of anger, that I couldn’t believe that I had something like this or that something like this could happen to everybody always thinks that why me? How did this happen?

    Kyle Johnson 16:33

    And then it became, like a, I think it’s people always talk about the 12 steps, right? Like anger, denial, whatever it is, and that I went through the dial, but I went through, you know, researching just tons and tons and tons and my specific piece, there’s not a ton out there about it. And then just disbelief, and then the acceptance of just losing that part of me. And that’s, I think that’s the piece that, like, if I had any advice to anybody, it’s just be nice to yourself.

    Intro 17:08

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

    Intro 17:38

    If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoveryafterstroke.com. And download the guide. It’s free.

    Kyle Johnson 18:11

    Because you being mean to yourself and you hating or being angry is not going to help at all. And I know it’s hard to to listen to someone and be like, oh, yeah, that makes sense. I’m just going to wake up tomorrow and snap out of it. But that’s the piece like I’m on a couple of groups. And you know, people ask for advice. And I’m always my response is, Well sleep, because you need it. And to be kind to yourself, because if you’re not kind to yourself, no one else is going to be. So to me, it was just anger, just like how could I do this to myself?

    Bill Gasiamis 18:50

    Just going about trying to come to some kind of terms of acceptance. And then you have to ask those crazy questions, which are not really real, you didn’t really do anything to yourself, it’s just that that’s the stage of the process, you got to ask yourself that question and then determine whether or not is it really wasn’t really me. And if it was, well, then how do I feel about myself?

    Bill Gasiamis 19:18

    And then what am I going to do about it? And am I going to do something about it? Or am I just going to dive into the pits of depression? But in your case, it sounds like you went through the process of that they and they helped you get an answer whether you liked it or not. And the answer helps you move forward in to the next stage, you know, beyond denial and anger. You know, it’s kind of like grieve the whole grieving process. Did you do the bargaining stage where you were? If I get through this, I’ll do this. Did you do any of that?

    Kyle Johnson 19:52

    I can’t even tell you how many times I did that. I think the first one was the worst by far because so our son Ryan I was he had just turned to like, right when my first stroke happened, and I lost my father when I was right around two. So of course, my mind is going absolutely insane. And I, there was a couple things I did in my mind that I think they’re insane now, but they helped me at the time. So one was, in my mind, this is really strange. So I apologize to everybody out there.

    Kyle Johnson 20:27

    But like, I would imagine my brainstem, like a clothesline is real tight, I match my brainstem, and I would literally put stakes around it with caution tape. In my mind, it’d be like, nobody touched this unless you’re going to help fix it. And then I would say to myself, three things, get better get home play with Ryan. And obviously, Melissa, my wife who’s like, I’ve already said the best person ever.

    Kyle Johnson 20:56

    Besides that, you know, being with him. You know, it’s understanding I hadn’t realize my why really fast of what am I in here for? And what do I need to get out of here for, and that was probably something that I may have done inadvertently, but focusing on why I want to still be here and focusing on why I need to be out so I can be with my family and make sure that they’re taken care of and you know, they don’t see me with tubes and all the fun stuff inside me.

    Bill Gasiamis 21:29

    Yeah, you’re a really cool, dude, I’ll tell you why. Because the symbolism of what you said, about placing stakes around your brainstem and then putting caution tape around that, I’m not sure if you actually realize how much of a positive influence impact that makes, because it’s creating neural pathways around protecting self-protection of that zone, and telling your body to be careful with it, that is actually something legitimate that’s happening. So when I was waiting to learn how to walk again, I was imagining myself walk again.

    Bill Gasiamis 22:09

    Exactly the same reason creates a neural pathway, a neural process that is the same as if I was walking, even though I hadn’t got back on my feet yet. So that when I got there and started walking, my body was familiar with walking, even though I hadn’t physically done it, because it had already created the pathways.

    Bill Gasiamis 22:30

    So what you’re doing is saying, with the rest of your body, you’re going, you guys that are handling, you know this part of me my brain, you guys need to take caution there. And you need to not create a negative impact in that space. And I’m not sure if you realize, but that is actually doing a world of good in your space visualization, and having that kind of approach to it. And that kind of care that you’re giving yourself in that space in your head is next-level amazing.

    Being Able To Walk Again After Multiple Hemorrhagic Stroke

    Kyle Johnson 23:10

    I appreciate that. Thank you very much night. I didn’t know that it was just, I thought it was something weird that I was doing to get through all the shenanigans that I was going through at the time. If you don’t mind me asking you a question. How long did it take you to regain your ability to walk and stuff like that?

    Bill Gasiamis 23:28

    Within four, four weeks, I was walking again, I wouldn’t say I was walking confidently or well, or anything like that. But to anyone who knew me, I was upright, I was walking. As far as they were concerned, the job was done, you know. So but after that what came was the knee, my left knee would collapse on me every so often. And give them multiple times a day. So when I’d be standing still in one spot, it would collapse when I’d be walking or collapse.

    Bill Gasiamis 24:01

    And that would make me feel like falling over. It was always numb and it still is numb. So when I was getting used to being on that leg again, I wouldn’t know where the leg was in the world like in space. And I’d put my foot down without thinking really like my old version. And then I’d be find myself on the ground because my leg hadn’t woken up to being on the ground yet my right side had but my left leg didn’t know that it was supposed to be in the same situation and it would just collapse.

    Bill Gasiamis 24:41

    So I didn’t feel good about walking probably for many years, although nobody would have been able to tell and what I find myself doing is leaning. I find myself off balance and leaning to the left a fair bit. And as I do it, which is even stranger when people are new Next to me, I find myself walking into their path or pumping into them with a wife.

    Bill Gasiamis 25:05

    Continuously it gets annoyed at me because stop walking in front of me would ya. So, it took the best of a month for me to walk again. And away from the wheelchair where I said to them, I’m going to walk without the wheelchair today. But then, yeah, there’s still rehab, and still outpatient rehab and still training to get it better.

    Kyle Johnson 25:33

    Yeah, I know I had the same thing. I wobble when I walk. So for you, it was your left side. For me, it was my right side. So during my surgery, my right side stopped working completely. And they came out and told my wife, my mom and everything, they’re like, Well, you know, his right sides not working. And his face is palsy on this side, you know, he’s probably going to be in a wheelchair, and he’s going to have a feeding tube and all that stuff. And that was like halfway through the surgery.

    Kyle Johnson 26:02

    And that’s what my family got to hear. So coming out of it, like, I guess it was a half hour or an hour, before the end of the surgery, my arm just started doing this. And they’re like we’re done. So that’s when they patched it back up and do exactly what you said, I had to, I think it was four or five different times was restarting with speech. I know I see double vision and my eyes bounce.

    Kyle Johnson 26:31

    So I haven’t seen a static 3d image in like six or seven years. And that exactly like what you said was, so I had a walker, because I lived in the hospital pretty much with rehab speech, OT PT, all that super awesome, great stuff. And I left with the walker. And I remember one day just being like, I’m either gonna build confidence or reliance, there is no in between.

    Kyle Johnson 26:54

    And to be able to show my son, hey, adults are fallible, I have to correct myself to learn how to talk again, to understand language to understand sounds, and to walk in, it’s my fault. Guess what, dude, let’s get backed up. Let’s go. And that was a really good, I hate to say it. But that was a really good takeaway for him to be able to see people struggle and to understand it’s okay.

    Kyle Johnson 27:18

    And so to your point, it’s, it’s, people don’t know, but But you know, you know that when you’re a little wobbly, or, like, my wife knows that she needs to walk on my right side, because I’m gonna bump into her first of all, and then I can’t hear out of my left ear anymore. So it’s kind of like it, she just holds real tight, you know, and I just bumped into her and walk into a wall or something.

    Kyle Johnson 27:41

    She’s like, You okay, I’m still here. We’re good to go. So I fully understand that. And, you know, it goes back to the people that understand it a lot that you’ve been around, or that we’ve been around that I probably say thank you too much to them. Just because what they’ve done and what they’re able to do versus a stranger on the street that they don’t know.

    Kyle Johnson 28:03

    You know, they look at you and they’re just like, I’m sure you’ve heard this a million times. It looks fine. Right? Well, I can always pull the card and like half. So I got that going for me. But yeah, it’s That’s crazy to think of. And do you ever look back and just thinking in amazement, almost of where you come from, in a way? So my wife makes me do this, she like pulls out her phone.

    Kyle Johnson 28:35

    And she’ll make me watch a video of like me trying to move my hand or something. Or talk skills, look how far you’ve come? And I’m like, I don’t want I don’t want to see this. Like, I just don’t want you to watch it at the goodness. Do you ever get that sense of wanting to go back and watch or seeing stuff? And you’re just like trying to process it again? How do you get through some of those things?

    Bill Gasiamis 28:59

    So at the at the beginning, it’s traumatic. And yeah, I do think back and I don’t have a lot of, you know, 10 years ago, there wasn’t a lot of reason to. And I didn’t know any better to record myself doing any of that stuff. And post it on social media and you know, share an inspiring story, like a lot of people do nowadays, which I think is amazing. So I don’t have much to look back at.

    Bill Gasiamis 29:24

    But we do have a lot of memories, and my wife and my kids remind me sometimes when things come up, but yeah, that gratitude that whole, super grateful for the fact that we’ve come through an amount of it, and we somehow unskilled pretty much, you know, we were in our 30s But we were very childlike. You know, we had never really faced adversity. We were very naive to the world still.

    Bill Gasiamis 29:52

    And then we get to the point where we’re dealing with this stuff and without having the skills from past experiences, we found the skills and, you know, we we found a way through, we made some good decisions, we made some bad decisions, majority of them were good. And we came out the other side. The thing about going back and reviewing the footage of you talking, or you’re in hospital and all that kind of stuff, it’s traumatizing.

    Exposure Therapy

    Bill Gasiamis 30:22

    And I know a lot of people would like to avoid reliving the trauma. But what that is, is there’s a psychological process in counseling that people that a counselor will take you through, which is specifically to expose you it’s called exposure therapy to expose you to the trauma that you have experienced more than once regularly. And what happens is, then it becomes a memory of the exposure, not of the trauma. So it kind of separates you from the trauma and leaves the trauma in the past.

    Bill Gasiamis 30:22

    And then you talk about it and remember it from the next stage of the trauma, which is the memory of it. And then every memory that you’re going back and remembering is a memory, you’re not remembering the trauma. So what it does, it’s it’s how you heal, and leave trauma behind. And that’s why I say counseling, counseling, counseling is the most important thing. It’s not the most important thing.

    Bill Gasiamis 31:26

    They’re all the most important thing. But in this context, because what counselling does is expose, it allows you to talk about it regularly, to a point where you eventually I kind of got sick of talking about the bad part of it. And then I kind of made all these came up with all these conclusions and changed my opinion of what his conclusions were at the beginning. I’ll never be able to have a good life. I’ll never be able to do this all the I’ll nevers.

    Bill Gasiamis 31:56

    And then it was like, what are you doing now with your stroke? I started a podcast oh you started a podcast? Ah, okay, that’s it. Tell me about that. And then it’s like, would you have ever done that before? And I said, No. Why did you start a podcast about stroke? I don’t know, it was about this. And about that. And then you get to this stage where you’re doing these things that are because of the experience that you had.

    Bill Gasiamis 32:24

    And you’re trying to reconcile your new identities who the hell am I, you know, why am I doing this? And why did that have to happen for me to do this? And then I started reflecting back on that trauma positively. Because it led to all these other things. All this growth, that’s like, shit, that was a really bad experience. But oh, my gosh, look, how much good has come of it?

    Kyle Johnson 32:55

    Yeah, that’s something that my wife, like, I just keep going back to her. Because she’s the one I kind of kept me in line, let’s be real. And she’s probably the most positive person I know. And is exactly right. I mean, you obviously said it way more eloquent than I ever could. But that’s exactly right. It’s how do we, how do we look at the experience?

    Kyle Johnson 33:19

    Because like I said earlier, I wouldn’t wish this on anybody. But at the end of the day, what positives can we take away from this? What can we share with people so that, you know, I get a lot of questions inadvertently, about the stroke process, or what I went through or even, you know, some of the people I work with, they know that I’ve had things, and they’re asking how they can ask, right?

    Kyle Johnson 33:46

    And which I think is really cool, that they’re at least engaging, and they’re trying to understand because, you know, being on this podcast is, I’m an open book, right? You asked me a question, I’m gonna answer it. And they know that about me. And we build those relationships. And it’s really awesome for them, to be able to hear the experiences and the things we went through and the things I went through.

    Kyle Johnson 34:05

    And then be able to say, with somebody else that had something similar or something else that cancer, whatever it may be, how do you approach them without them feeling weird about it, and then trying to engage in how to address the very touchy subjects is really cool. Because then, you know, that makes them feel like they’re part of a solution too. And, you know, one of the things that I’ve taken away is I mean I’ve always been the best person, let’s be real.

    It’s Okay To Offend People

    Kyle Johnson 34:37

    So it’s one of those things where now it’s like, okay, I can help other people learn to have a basic conversation about a human. And that’s really, really neat to see is people wanting to understand how to have those conversations without, you know, the word offending or whatever.

    Bill Gasiamis 35:07

    I think offense is necessary. I think it’s okay to offend people. Because I’ll tell you why. Because if your intention is not to offend, and you’re offended, well, your intentions were really cool. So that’s all right, I’ve got no problem with people coming to me being afraid that they might offend me saying the wrong thing, and me getting offended.

    Bill Gasiamis 35:28

    Because I know most people actually aren’t attacking me specifically, because I’ve done something wrong to them, or they’re coming after me, what they’re doing is that they’re trying to navigate this situation, and they’re learning how to, and they have the unfortunate experience is that every survivor of something is always going to respond differently to every other survivor of something.

    Bill Gasiamis 35:52

    So they’re never going to get it right. And what they have to start with is, just ask a couple of questions, like, is this something you’d like to talk about? And if it’s not, that’s it, end it there. And if it is, well, what is there something that you prefer we didn’t discuss? And that, you know, and then that person might answer? Well, I’ll let you know when we get there, if we get there.

    Bill Gasiamis 36:14

    But what I’ve found is, although some people are in the, in the denial phase, and they’re still not ready to talk about it, really, they’re looking for the opportunity to talk about it to the right person in the right context. And, and they are, and they just don’t know who that’s going to be or who they can open up to.

    Bill Gasiamis 36:35

    That’s why I love counseling, because when you go to counseling, you’re paying that person, but also they’re creating a space where it’s safe for you to be able to talk about it and express it and perhaps start moving through the stages, so that you can start putting them behind you like, you know, the stages of grief, for example.

    Bill Gasiamis 36:54

    And denial, and, and anger and frustration and all that stuff. That’s kind of what I see, I’ve had people on this podcast, who hadn’t spoken to anyone heard about their stroke for 10 years, and thought that the first person on the planet that they should speak to about it was me.

    Bill Gasiamis 37:40

    Well, graduations for that.

    Bill Gasiamis 37:17

    Thank you. But like, I’m not sure why me but whatever, I’ll go with it. And then also 10 years, I’m sorry that you had to wait 10 years. But I’m glad you got there. So that’s cool. And what they did is they put on a perception to the rest of the world that there was nothing wrong, that everything was okay. And I’m like you I’m an open book, I can’t do that. I can’t pretend that something’s okay.

    Bill Gasiamis 37:43

    Because you see it all over my face that it’s not okay, my behavior, the way I speak and respond and talk. So what I’d rather do is when somebody says, Man, are you alright today, you’re not acting yourself, or you’re behaving inappropriately, or whatever, I’m like, I’m not alright, today, you know, and thanks for picking me up on it. And I’m sorry, I’m gonna have to apologize for my behavior. And, hopefully, I’ll be better tomorrow, but I might not be I might just be the same shit tomorrow that I was today. And I’m not intending on being that way. It just might be that.

    Kyle Johnson 38:16

    100% I mean, I think it’s, I don’t know if it’s harder to mask it now than it was like, when, you know, when I had a bad day before, it was like, Alright, I can put it behind and whatever it is. Now. The smallest thing can just make me irritated or whatever it may be. And I have these conversations all the time. Like, yeah, I just need a minute, I can’t fix it. It’s not something I can just snap out of.

    Kyle Johnson 38:50

    It’s something that I have to just deal with. And you know that I appreciate you bringing it to my attention and I will do my darndest to not continue to have that but because I don’t notice it. You know what I mean? Like, that’s just the way it is for me at this point. And those people that bring it up, it’s like, oh, man, you got a booger in your nose. You got something in your teeth.

    Kyle Johnson 39:13

    Well, thank you for telling me so I can fix the situation. But for this one I don’t know if it’s gonna get fixed at its same timely manner as picking something out of my face. So that goes with that gratitude of getting to getting those people on your side that are willing to tell you hey, you’re being kind of a jerk, or you’re being kind of a deck let’s let’s fix this. And you’re like, Well, I’m gonna do my best, bye. So yeah, those people are super helpful and in your life as well.

    Bill Gasiamis 39:44

    Yeah, it’s a two way street. You know, you got to take responsibility for when you’re being an idiot and not blame the stroke. Although it’s caused by the stroke. I don’t think you need to blame it forever in a day, it’s impossible to continuously blame an outsource the responsibility of your behavior on the stroke? It’s not it’s us. So it’s part of us now. And we’ve got to find the way through. And sometimes there doesn’t have to be a way through there just has to be a really good apology.

    Kyle Johnson 40:14

    Yeah, I mean, I think it’s just acknowledging that yeah, guess what? Your right. Perception is reality, and I’ve been a piece of crap today, I apologize, I will do my best to be better. But I own my actions. And, you know, I’m gonna try, that’s all I can say is I’m going to try. And I apologize, I’m not Yoda. Like, it’s got to be a try situation.

    Bill Gasiamis 40:39

    Yeah. And the thing about it is you’re gonna you’re living with a neurological condition, we do get irritated, a lot easier, light sound, too much sensory overload. And especially if you’ve got an eye condition like yourself, you’ve got nystagmus that is going to cause you know, a level of discomfort and irritation to your brain.

    Bill Gasiamis 41:02

    So you’re kind of already irritated without having gone into the public domain yet. And what that’s doing is, it seems like you’re short fused, or whatever, and it’s getting you over a small kind of get you over the line quickly. But it’s like, no, I’ve already had my irritations already today, like as many as I can handle.

    Bill Gasiamis 41:25

    And this was the straw that broke the camel’s back, for example. And it’s like, okay, I know you don’t get that because there’s no way you can get it. Because you have to be like me, and I don’t want you to be like me. But what I’m saying to you is just, you know, this is it, we’re different people, we appear the same, but we are very, very different people.

    Kyle Johnson 41:47

    I had a co-worker at one point that, you know, he broke his foot. And whenever anything happened, he’s like, Ah, he’d get really frustrated really quick. And this is after my, everything happened. And he looked at me, and he’s like, I never even thought about, like how all because like, I used to have really bad headaches all the time. And you know, just trying to push through some stuff.

    Kyle Johnson 42:13

    And you know, he would bump his toe on something he’s really frustrated. And one day, he did it. And I was just looking at him. And he’s like, I never even think about how you deal with stuff. I can’t imagine having, what you all have, what you’re dealing with all the time and then having an injury. I was like, well, it takes it up a lot. Like when you get hurt, or like you said anything, unfortunately, can become a trigger.

    Kyle Johnson 42:41

    It’s just how do you identify that and then try to mitigate it the best you possibly can to where, you know, people around me know, like, Hey, I just need a minute, I just need to go away and lay down for a minute in a calm, dark place and just get myself back.

    Kyle Johnson 43:01

    And, it’s that whole piece of like, I appreciate you people for understanding that this is going to happen, and it’s not a might, it is going to happen at some point in time. And if it does, I apologize. And I’ll apologize after too. So yeah, it’s it’s been a trip to say the least.

    Self-Awareness After Multiple Hemorrhagic Strokes

    Bill Gasiamis 43:24

    Yeah, you know, but what’s been good about it, it sounds like to me, it sounds like that what’s good about it is you’ve become more self-aware. Your sounds like your self-awareness has just gone through the roof. And that can be positive. That’s only a positive surely.

    Kyle Johnson 43:42

    Before, people that are gonna watch this and know me, you know, I was, I apologize to all you out there that do know me ahead of this. And would agree with me on this when I was probably I knew myself very well, I was very confident in who I was as a person. Let’s be real, maybe a little overconfident and looking at everybody else out there.

    Kyle Johnson 44:04

    And what this has done is had to teach me to look inside more and really understand what I’m putting out is what I deserve back. And that’s a weird way to put it. But to your point, you do become more self aware to a certain extent because I know when I’m walking down a hallway or a street or something with my wife or my son that if I am wobbling, where my gait my walk is off.

    Kyle Johnson 44:33

    I know people are gonna watch me, right. So you become that self aware of like, what am I doing? How am I acting? Are people gonna think I’m weird? You know, whatever it may be. Or, you know, a lot of myself comes from humor, because as we all know, that’s the best way to deal with bad tragedies. So plenty of conversations with my wife and like, that wasn’t quite where it needed to go with the conversation, with dark humor.

    Kyle Johnson 45:04

    So it’s having to understand and get repeatedly corrected, to truly understand yourself a little bit more, that’s what I found for me is that I’d say these things, and I’d be corrected. And that would become something I’d be more mindful of. And I’ve had to build my own filters instead of naturally having them. Which is probably bad for me in the long run. Let’s be real. Because I’m not sure my filter system was great to start with.

    Bill Gasiamis 45:32

    Yeah, it sounds like it’s you by design this time instead of you by default?

    Kyle Johnson 45:37

    Absolutely. That’s a really fantastic way to put it actually. Before it was, you know, like, everybody could blame it on whatever you could say, like, I grew up that way. I’m just blunt, or whatever it is. Now it’s, it’s understanding that I need to understand what’s coming out my mouth, because I expect that to come back in a certain way. So it’s been a lot of learnings.

    Kyle Johnson 46:04

    And you are absolutely correct, that you become decided, I think it sounds like you did to becoming more self aware of what you’re saying what you’re physically doing, you know, all that kind of stuff. So it’s been a great learning experience.

    Kyle Johnson 46:21

    Probably getting on with it, at some point, let’s be real at the end of the day. But still, you know, it’s been interesting to have to relearn all those different types of things of who you are as well. And maybe things that you didn’t want to acknowledge about yourself as well.

    Bill Gasiamis 46:42

    You got no choice now.

    Kyle Johnson 46:44

    Exactly.

    Bill Gasiamis 46:46

    One thing about humor that I like about humor is if it triggers you, it’s worth exploring it, you know, that whole situation, dark humor, whatever. And I follow, obviously, a lot of stroke survivors. And one person commented about a show that they were at. And it was a comedy show, and the comedian made a joke about stroke.

    Bill Gasiamis 47:11

    And the response on that person’s social media profile was, you know, I went and saw this comedian, and he made a joke about stroke, stroke is no joke, you know, he’s an absolute disgrace, and all that kind of stuff. And that person got really offended that there was somebody on the other side of it, who made a joke about stroke. Now, I would have loved to have heard the joke about stroke, I reckon I would have found it funny and laughed.

    Bill Gasiamis 47:38

    But some people aren’t in that stage, where they’re able to have a laugh at themselves, or about their stroke, or whatever, and, are focusing on the negatives instead of the positives more often than not, and it is really serious. There’s no doubt about it. It’s really serious.

    Bill Gasiamis 47:56

    And so what I mean, the fact that it’s really serious, and it’s really hard, and it’s really terrible, and all that kind of shit. So what, like, and what are we going to do? Like, just get depressed because it is really serious? We may as well have a laugh about it, because it’s serious. To kind of turn it on its head and say, as serious as you think you are stroke? No, I’m gonna have a laugh about it.

    Kyle Johnson 48:22

    You got to own it. And like, I’ve actually a lot of people I know, like I make on it, maybe inappropriately, but I make jokes, a lot of like, hey, the strip stuff, and I’ve had people come up to me and be like, Hey, man, you shouldn’t talk like that. And I’m like, yo, I’m owning this one that I’m allowed to, to joke and laugh. Because if I don’t, other things are gonna come out that are gonna be worse.

    Kyle Johnson 48:49

    So I’m all for, you know, people that are able to bring a humor aside to the situation because as you said, it’s a shit situation. But to at least have something unique come out of it, even if it’s a joke, or even a bad one, whatever. But I just don’t want to understand the whole I like, okay, maybe when a third half that I’d be a little bit pissy, but I wouldn’t, you know, raise about it. It’s more of a, you know, now, I used to joke with my friends all the time.

    Kyle Johnson 49:25

    Like, oh, I remember when I was younger, this is actual saying I used to say was, you know, I hope I brought my helmet because my head my brain might explode. And then it did. And so, so now, it’s not like the funniest joke anymore, because it was a reality thing, but I still say it. Or, you know, I don’t know.

    Kyle Johnson 49:45

    It’s just one of those things where if you can’t laugh at yourself and the things that are going on around you, then I think you kind of needs to reevaluate, because one, you’re still here. And that is huge. Right? You may have deficits you may have whatever it is, but at the end of the day, just, we gotta be happy with it. And some things might offend you, I get it. But at the same time, it’s a joke. That’s a whole other comedy conversation, I guess.

    Stroke Humor

    Bill Gasiamis 50:16

    It’s a huge conversation, but it’s a really important one. I’m not particularly qualified to have it. But I know just from my perspective, the thing about it is, with my mates, I was kind of the clumsy kind of guy. And I end up finding myself falling over often. And, of course, they would laugh at me.

    Bill Gasiamis 50:45

    And just because I had a brain surgery, and had to learn how to walk again, if they were with me in my house, when I fell over, they would laugh at me. Just because it was as a result of the the stroke or my clumsiness. I would like to think that, even though it hurt, and I got injured, you know, bruised, battered, like not kind of broken or anything. I would like to think that they would still laugh at me.

    Kyle Johnson 51:18

    Yeah, it’s not malicious.

    Bill Gasiamis 51:21

    It’s their instincts. It’s their response.

    Kyle Johnson 51:24

    People falling, it’s funny. I’m sorry, it is. I mean so I have a pair of pants that I will never get rid of, that are like these. It’s like a weird, almost like a jogger material. Not like a fleece or something like really slick almost. And I remember one day after PT, I was sleeping and my father in law was at the house. And I was wearing these pants, and I want to get up, and I swung my leg over the bed.

    Kyle Johnson 51:54

    And I slid off the bed, and straight into the nightstand and hit my head. It was the first time I’d fallen since I got out of the hospital. And he here’s a huge dud, because, you know, I’m an adult male, and I’m laying on the floor, and you might as well just paint a chalk outline around me. And he’s like, Dude, are you okay? And I was like, I had no idea what just happened.

    Kyle Johnson 52:19

    And I was like, I seriously think my pants just slipped me out of bed. And we just started laughing, because what are you going to do? And then I told my PT, my physical therapist, that I fell in what happened? Because she was like, you know, as you know, they ask you all the time, like, and he falls in a whatever. And I was like, Yeah, I fell out of bed. And we kind of go over sort of laughing. She’s like, How in the hell do you fall out of bed like that? I was like, I don’t know.

    Kyle Johnson 52:47

    But I’m never wearing these pants again. I’m like, 1% sure they’re haunted. And it was a joke. It just turned into something that became relatable to her too. And that’s, that’s the piece that I think a lot of these people don’t understand is these jokes come from a place to where I know that unit makes me feel more normal.

    Kyle Johnson 53:09

    Because when they’re making fun of everything else, but I’m the one left out group, like Yeah, no, I, I want to be brought into the fold. I made dumb decisions, and I did dumb stuff. Yeah. So I don’t know, I think it’s a way to, to relate to a person and in order to make people feel more comfortable and to be involved, you know, to acknowledge that that actually happened.

    Kyle Johnson 53:40

    And there’s a comedian. He has cerebral palsy, I think it is. And he talks about how he’s disabled. And my gosh, I think it was like America’s Got Talent or something. He was talking to Simon he’s like, we’re the only minority group that you can join at any point in time. You’re just one bad bicycle ride away from joining our side. And when I heard that, I just started laughing they know people that got mad at the joke and I’m like, one ah, nope, you cannot say that like, Are you kidding?

    Kyle Johnson 54:15

    I guess but like you can’t be offended by something that literally has no impact on you at all. besides making you laugh on the inside because you know that was funny. And that’s the case it’s you know, it’s the people that want to protect you are protect others from that kind of stuff, but at the same time, like, I don’t need protection. I know what salami I know what I find funny, I don’t like it. I’m gonna turn off. And I maybe this is that dark humor, please.

    Bill Gasiamis 54:45

    I love it. I love it. Because you just reminded me of a comedian that we used to have here. He was popular in the 90s his an Australian guy his real name was Christopher Widows and his stage name is Steady Eddie. And he has cerebral palsy.

    Bill Gasiamis 55:06

    Okay, and the guy’s not steady. It’s, a sick aussie humor thing that we do when somebody is short we call them stretch or tall when somebody is tall we call them small. So Steady Eddie was on stage breaking down those types of barriers in the 90s. And he was just tape hanging it on himself the entire time, he was talking about things like dating about driving about public transport, you name it, he was talking about everything. And we, because we didn’t, because I was a lot younger in the 90s.

    Bill Gasiamis 55:42

    And I didn’t have a filter of how people might get hurt or offended or whatever. I just took this guy, at his word, whatever he told me coming from his perspective of the world. To me, it was absolutely hilarious. And I know, some people might have got upset with him or whatever. But I thought he was amazing. And he was the only disabled person, whether they were on TV or movies or wherever that I had ever seen.

    Bill Gasiamis 56:11

    Being himself on stage in front of sold-out crowd saw that shows. So it’s like, how can we take that away from this guy? How can we decide what is or isn’t funny? And how can we not allow him to express himself in a way that helps him get through all the stuff that he’s got to get through? Every single day of his entire life from the day he was born.

    Bill Gasiamis 56:38

    He’s had to break down so many barriers to overcome the condition his you know, his his upbringing sounds like it was amazing. But his physical abilities were not even with the majority of the people. So he had to work harder, much, much harder to get to that point where he was actually being his authentic self and living his life.

    Bill Gasiamis 57:04

    So I’m not going to take away his dark, sick jokes about cerebral palsy, not in a million years. I love that. So that’s kind of the way I see it, you know, I think everything is potentially open for a little bit of, like, everything’s open for criticism. Everything’s open for comedy, I think.

    Kyle Johnson – Life Before The Stroke

    Bill Gasiamis 57:31

    It’s lovely to have a conversation with you, and go so deeply into the conversation. I love it. So just to move along a little bit, because I want to get to know a bit about you. What were you doing before all of this stuff? And how are you going about life under “normal” conditions?

    Kyle Johnson 57:51

    It was, you know, I picturesque would be a good word for it. You know, my wife and I, we’ve been together since high school type of situation. And we had moved out to Minnesota for work. And we were there for a couple of years. And the company, we both worked for the same company. And they went through some layoffs. So I was part of it, went to another company, and just things were not going well with the company itself.

    Kyle Johnson 58:27

    So I voluntarily left I was doing my own thing. And we’re working out we’re doing the right stuff for our bodies, and we’re just being 30 year olds, you know, we had a kid and we were trying to raise on the best serve ability. And, you know, to your point, we had a few things that had gone wrong in our lives that we both struggled with at one point.

    Kyle Johnson 58:47

    But, you know, it wasn’t like anything absolutely insane, you know, that we’d had to deal with. And, you know, when all this started happening was really, I look back at it, I’m like, I also see that, like, my wife had to go to Portland or something for work.

    Kyle Johnson 59:09

    So I was home alone with our son. And we’re working out a lot, like I said, and we are on our D load week where we lower weights just to do that kind of stuff. And I remember, you know, used to throw in the air like every dad loves to do is throw their kid and make their wife freak out. So I was doing that and I realized I couldn’t get my hands up. And I just like, Well, I gotta tensioner my back. I don’t know, whatever because nothing else is really wrong.

    Kyle Johnson 59:37

    And then she left and you know, just kind of perpetuated and then which just kind of continued on. And I remember waking up that Monday to take him to school. And I could only see like, you know, 20 feet in front of me without it being crossed and I was like us. It’s weird. I must have just slept wrong. I don’t know. So I took him to school came back and you know, or daycare or whatever it was that I picked up later.

    Kyle Johnson 1:00:10

    And the next day it was like I could only see like, two feet or three feet. I’m like, What is going on? And I thought I literally put an eyepatch on from his Halloween collection, and joven School. And on the way back, I called my wife and I was like, Hey, I’m not feeling real good. You know, I feel like my face is numb. noises are freaking me out. Like, I can’t hear bass. Like it just couldn’t understand certain things.

    Kyle Johnson 1:00:36

    So she called, her company had a nurse line. And they’re like, hey, the things you described haven’t call us right now. So she called me back. And she’s like, Hey, they want you to call her I was like, Come on, man. So I pulled into the gas station, still got my patch on. I’m pumping gas, and I’m talking to the lady, I’m starting to slur. And it was one of those things where she’s like, get off the phone. Get to the hospital right now. And I was like, whatever, I’m home alone, who’s gonna feed the dogs, right.

    Kyle Johnson 1:01:09

    So for this, let me guess, go home, feed the dogs. And at that point, I realized that like it couldn’t really see very well. And my right side was doing not like it was just a lot of things just like something might be wrong. So luckily, there there was not that far from where we lived at the time. And I remember parking, stumbling into the hospital. And then like falling in the admissions chair.

    Kyle Johnson 1:01:41

    And lady just looked at me and I couldn’t understand her. I couldn’t do anything. She was looking at me. She’s like, we’re going back when I got a wheelchair that didn’t MRI. And by the time I came out of the MRI couldn’t talk, couldn’t see nothing. But my wife knew that I was going to hospital. So I just handed the doctor my phone. And she called my wife.

    Kyle Johnson 1:02:05

    My wife is expecting me on the other end. And so Doctor being like, well, he doesn’t have anything, but he’s having a stroke right now. And he’s bleeding in his brain, and we don’t know what’s gonna happen and all this stuff. So that was interesting, you know, kind of knocked it out for a while. We were just kids. I know, this is weird to say but like going to concerts going to plays doing normal family stuff. And now it’s been a challenge.

    Kyle Johnson 1:02:39

    You know, we used to love going to, like Minnesota future concerts for music and stuff like that. And we’ve tried to go to concerts all the time. And now like, I have to wear headphones. If it’s too loud, like, you know, I’m an old person. I’m like, God, it’s too loud. I can’t do this. So it’s the overload. You know, I don’t like being around a ton of people around me all the time. It’s just, you know, little things you learn. And now I work from home. So this is literally my office in my bedroom. So this works out perfect for me.

    The Perpetual Pirate

    Bill Gasiamis 1:03:17

    Yeah, I hear you. Perpetual Pirate is your Instagram name. And can you tell us why you’re the Perpetual Pirate? Because for people that are watching on YouTube, they’re listening to this. Why are you the perpetual pirate?

    Kyle Johnson 1:03:39

    when I first started my Instagram account, it was no I like everyone. It was just like, whatever type of social media account and after my first stroke, I love cars. I mean, you probably seen some of them. I love cars. I love Chinese. I took a little hiatus this driving was a little bit challenging to get back to but I loved it. And when my when my I refused to turn back to being normal.

    Kyle Johnson 1:04:10

    I wear an eyepatch everywhere I drive. And I was like, You know what, I’m gonna own this. This is me. I am the perpetual pirate. I’m never getting rid of this eyepatch. I’m in this forever as they would say on the Instagram taglines and reels and all that stuff. And it just is something I got to own right.

    Kyle Johnson 1:04:31

    You own what’s happening around you. And that’s one of those things where I’m taking it back. It’s mine. I’m owning it and if somebody asks, absolutely, let’s talk about it. So gives you Yeah, exactly. I’m not gonna let it on me. I’m voting on it. It may take me down at some point but the whole time I’m gonna fight. So yeah, that’s just where it comes from. It’s just more of a little poke at it.

    Bill Gasiamis 1:05:00

    A lot of people struggle when they look in the mirror and see the way that their face has changed. And I’m looking at the photo on your Instagram, the profile photo, it’s you and your wife and your baby. Yep. And, you know, there’s an obvious change between that photo and now. Yeah, how did you come to terms with that? Have you come to terms with it? What’s it like when you look in the mirror?

    Kyle Johnson 1:05:32

    I hate it. So, I mean, just to boil it down to that I absolutely hate looking at the mirror, still, I mean, I’ve gotten past all the anger and all the jazz but at the same time. So like, even at work, right? Like, I have my reading glasses that are reflective. So that way, when I put them on, you can only see the screen through my eyes. So people don’t really tell them eyes are weird, or differ, I should say.

    Kyle Johnson 1:06:05

    So I am not a superfan looking at myself in the mirror. Although, you know, I tell my wife that, you know, she’s got a good blessing, because half my face is going to be wrinkle free when we’re like 80. So I’m going to be looking like a new baby, right? The at the end of the day, I don’t like looking at my face.

    Kyle Johnson 1:06:24

    And people are like, Oh, I don’t understand why I’m like, Well, it’s hard to explain. I know what I know what I want to look like, I know what I used to look like, but it’s never coming back. So, you know, as long as my teeth are clean, and my nose is clean, you know? And was once in a while I don’t know. It’s just not something I walk into the mirror I’m like, aroused you this type of situation.

    Kyle Johnson 1:06:51

    So I’d say that’s probably one of the biggest lingering effects is, you know, I would say my eyeline tends to naturally just go down when I’m in front of the mirror versus looking straight at myself. That’s a really good question, actually. Because you’re absolutely right, there are certain things that I keep that photo, and actually it’s right back here, right there.

    Kyle Johnson 1:07:20

    And that’s one of my favorite photos. That was when we were working out a lot. We just had Ryan, things are going well. And then you know, 18 months later, whatever it was, just kind of took it out. So that’s one of my favorite family photos of that is when I can look back at it and be like, I love that time period. Just sort of one, you know, you’re in shape. You know, just happy memories from that point.

    Bill Gasiamis 1:07:53

    Oblivious to the real world, arent you? You’re still kind of really oblivious all the problems that you’re living with, you probably created in your own head up until they actually occurred. And then it’s like, okay, these are a completely different set of problems that I’m not prepared for.

    Bill Gasiamis 1:08:09

    And I didn’t know, were part of my life. For sure. So do you feel like there will be a time where you’ll have fond memories, just like the ones that you describe from that time? Do you feel like you’ve made some of those now, in this new stage?

    Kyle Johnson 1:08:31

    Oh, absolutely. I mean, you’ve probably experienced this and if you haven’t, please tell me you haven’t. But there has been muster with this part. And then it kind of leads into it, which there’s been a shift in relationships, from friends, family, whatever it is to what it was, to what it is now. You know, the people that if somebody is watching this, you’re going to watch it, I apologize if this hurts your feelings, but at the same time, it is what it is, right?

    Kyle Johnson 1:09:03

    Where it’s, you know, the people that are like, Oh, I can be there, whatever you need help with, just let me know. And then you ask them, and they’re just like, Oh, I’m cleaning my eyebrows, that day, like, cool. So that piece is something to kind of think about as the relationship pieces that are moving forward to where those are the happy memories that are focused on right is meeting the new people that I become friendly with.

    Kyle Johnson 1:09:29

    And, you know, I can be myself at this stage, where it’s not they remember me from what I was, and all the things I was able to do and I could do at that point in time. But these are people that know me now. These are people that understand what I’m capable of now and appreciate that. And those are the memories that I remember of joking around and having a great time and watching our kids play and all the little things that you would do normally.

    Kyle Johnson 1:09:58

    But they only know me as this sort of allows them to not have those biases, preconceived notions of like Kyle used to be able to do that, or he used to maybe say this instead. But now they know me as this. And that’s how I’m accepted as this. And that. That is those that that’s the building blocks of the memories for me is knowing that people that accept me for who I am, and will actually be there and have fun.

    Kyle Johnson 1:10:29

    Like you said earlier, I have plenty of people that we took around all the time, about my face not working or my eyes being silly, or whatever it may be, because it’s funny. And a lot of young people I do guess wouldn’t necessarily have those kind of jokes, or the people that knew me at this stage, fair game man.

    Kyle Johnson 1:10:51

    And it’s okay. So lucky looking back, it’s looking at those memories that mean more to me, than a lot of the older ones that people I don’t talk to anymore, or relationships that may not be there anymore, either. So, like you said, it’s almost like remembering the memories to overtake the old ones, in a way.

    Falling Out?

    Bill Gasiamis 1:11:19

    So you know, the previous people who were kind of in your life, and now they’re out, for whatever reason, you think about it, like they’ve gone through a trauma too, they’ve gone through the trauma of seeing their friend, who was well looked like this, who was unwell, looks like that. And they’re grappling with their own mortality because of your potential mortality.

    Bill Gasiamis 1:11:41

    And they’re grappling with the identities change that they’ve had, just by seeing that how your identity has shifted, they used to relate to you in this way, and they don’t know or they’re not capable of expanding the way that they relate to people beyond say, going to the football or going to the pub, or whatever it was. And then it’s like, what do I do now? And yeah, I want to help the guy because he’s a great guy and he’s worth helping.

    Bill Gasiamis 1:12:09

    But when he asks, I hope he never asks, because when he asks, that’s going to be a really difficult time for me, because I’m not going to feel comfortable being there, because I’m not well enough, or I’m not strong enough, or I don’t have the capacity to support him emotionally, or in these other ways. Yeah I can lift a box and move it and I can push it, you know, push a chair or, you know, pick up a bed and relocate it or whatever.

    Bill Gasiamis 1:12:38

    But I don’t have the emotional capacity to be around that guy. Because he’s evolved. And I’m not evolved to that extent yet. I’m still the guy who’s appears like an adult, appears like, he has some life experience, but really is 35 36 37 and hasn’t really had any life experience because everything’s been picture perfect so far.

    Bill Gasiamis 1:13:05

    And they’ve only ever lived with the perception of problems that they created in their head, because they didn’t have any problems. And they probably felt left out and they thought they should have some. So they went about creating some. Do you know what I mean?

    Kyle Johnson 1:13:17

    100% And I think that’s the other piece that comes with all this learning is that one of the things I’ve had to do, and I did this a lot when all this stuff first happened. And it took me a little bit to realize I was being a total dick while doing it, which is comparative, or be comparing.

    Kyle Johnson 1:13:41

    Because at the end of the day, the stuff I went through sucks. And you know, I think for you, me and people that have gone through this, it’s easy to do that one up, or you’re like, Well, you had what I had for, but I don’t know what to tell you. I got to tell you, though, to where it’s like I had to learn and understand that. That what people are going through that is their own stuff.

    Kyle Johnson 1:14:06

    And that may be the worst thing that’s happened to them. And you know what, I’m happy that that is the worst thing that has happened to them. And that is what’s thrown you through a loop is you stepped on a Lego, and you think you’re dying, man, express yourself, do what you need to do. I’m not comparing anymore. I’m not. I mean, yes, do I get judgy let’s be real, I’m human.

    Kyle Johnson 1:14:32

    But at the end of the day, it’s your experiences and what you’re going through on your own and I wish you the absolute best getting through it. And you know, being that I have gone through some of these things. If you need help, let me know I don’t know what I can’t lift boxes for you or move the bed.

    Kyle Johnson 1:14:53

    But I could help you do something else maybe. So, yeah, it’s that honest In case of like, yeah, I may have gone through some shit. But whatever you’re going through is most important to you. And I have to I don’t have the words appreciate, but understand it, I guess be the the bit, the better word for it is at least understand that what you’re going through means more to you than what might mean to somebody else.

    Bill Gasiamis 1:15:24

    Yeah, absolutely. That’s a really wise way to say it. Because what that does is it doesn’t make hopefully, the other person feel guilty. And you’re not doing that what you’re doing this guy, Hey, you do you all do me. And if if we come to cross paths, again, we cross paths again, and we’ll work it out. Then I had a friend of mine who I was really tight with for many years.

    Bill Gasiamis 1:15:48

    And then when he got married, you know, and I was married, you know, we kind of continued on and we did all that stuff. And then, and then he got divorced. And then we never heard from him again. And we didn’t hear from him again for a long time.

    Bill Gasiamis 1:16:03

    And I hear that a lot because people don’t know how to relate to you without their partner at a family gathering or a function or whatever. And it’s like, okay, I appreciate that to an extent. And then he found out that I was unwell. But he still didn’t make it contact, they still didn’t reach out or anything like that. And then we ran into each other at a local venue one time.

    Bill Gasiamis 1:16:30

    And then he said to me, man, I’m sorry, I haven’t called and all that kind of stuff. And I’m like, Whatever, man, you need to apologize for it, you know, I know you’re really unwell and sick it’s all good. Don’t worry about it, you know, no big deal. And then, to me, it just felt like, even if we kind of rekindled our friendship or tried to do something for him, it still would have been uncomfortable and bad.

    Bill Gasiamis 1:16:56

    And I think it’s nicer to just let him go. So that he’s not perpetually feeling uncomfortable and bad about what he has or hasn’t done or how he has or hasn’t behaved. I forgive you, I don’t really mind I’m not holding a grudge, but also don’t have the desire to hang around and be with you while you’re going through that phase.

    Bill Gasiamis 1:17:18

    Because I’m done with that phase. Like, I don’t have that. So I’ll just do may you could do to you. And I’ll always say hello to you if I sit on the street and chat to you and find out how you’re going and all that sort of stuff. But I just don’t really feel like we’re at the same place to hang out together and spend time. So it’s all good.

    Kyle Johnson 1:17:38

    But you know what, that’s okay. And the people that say it’s not have never had a falling out, let’s be real. I mean, you hear these things all the time, like, oh, we just grew apart or whatever it is, yeah, people grow apart, it just happens to be that you and I had something that snapped us apart. And it that’s just the way the world works. And you’re absolutely right, to the point where now, this is me being selfish, and I’ll admit this all day long. But I don’t have or want to have the energy to put forth on something like that.

    Kyle Johnson 1:18:21

    Like my wife and I are the same. Like, it’s something I don’t want to see we make snap judgments. But we evaluate situation and we’re like, you know what, I do not have the emotional capacity to deal with whatever you are going through, I apologize, I will be here on whatever you need. But at the same time, you know, I had to own my own shit. Like, let’s step in. And if we need to get through it, let’s get through it. But at the same time, like, I just don’t have the emotional capacity I used to have to spend on that.

    Kyle Johnson 1:18:59

    And like, to me, it’s, I deeply apologize, and I’ll be there to help you. But at the same time, I want to go hang out with my son, I want to go take him somewhere do mini golf or play video games or something. And, you know, no offense, but I want to do that. I mean, I’d love to help you but at the same time, jog on. And that’s harsh. And I get it. That’s also me being so selfish, to protect my own self from getting wrapped up there involved in the next level, whatever.

    Kyle Johnson 1:18:59

    Yeah, and you’re prioritizing your time, which is amazing, because we don’t do that right? We often don’t do that. And now you’re going hang on a sec. Let me say what I value more I value that more, that’s going to bring me more joy, more happiness, it’s going to be better for my long term, well being it’s going to do better for what I’m trying to put out in the world or how I’m trying to raise my son, all that kind of stuff.

    Bill Gasiamis 1:19:54

    And it’s like, Well, okay, I know what my values are. That’s where I need to put my energy because that’s Ultimately, why I was put on the planet why I decided to have kids. The rest of it is up to you to your journey, you work that out. And you will, you’ll get through, you’ll find a way. There’s no doubt about if you keep searching for answers, you’ll get answers. If you keep looking for problems, you’ll get problems. So it’s so good.

    Kyle Johnson 1:20:20

    Yeah, I mean, I apologize. I don’t remember his name. But one of the what are your other podcasts, there’s a guy that started with he loves the American saying, if you’re an asshole, you’re gonna keep finding problems, or something like that. And I love that line. Because it’s so true. And you can extrapolate it to so many different types of scenarios, where, you know, it’s cliche, like, oh, put the positive out in the world, and, you know, you can manifest that’s it, well, I can’t manifest a brainstem.

    Kyle Johnson 1:20:55

    I can want to do all these things, and put all these positives in the world. But at the end of the day, my actions have consequences and my actions that I get to send with my son, and I get to teach him to be the right person, or perceivably, the right person, or you know, all those different things is, you know, communication is key, as long as it leads to action, as far as I’m concerned, because we could talk about all this stuff all day long.

    Kyle Johnson 1:21:20

    But if you don’t go out in the world, and make it a better place on your own, or if you don’t do all these things on your own. Again, what are you doing man? Let’s step it and let’s do this, and you’re doing a podcast where people can truly understand and express and you give them the platform to do these things.

    Kyle Johnson 1:21:36

    And have people listen, and maybe learn a little bit about what you’ve gone through from a caretaker perspective, or, you know, from an actual survivor, whatever it may be, I think that’s an absolutely beautiful thing to do. And it sheds light on something where, you know, not every stroke survivor is 65 or 70. You know, it’s, it can happen to anybody.

    Bill Gasiamis 1:22:04

    And 70-year-olds are going through the same thing we’re going through and the 83-year-olds, they’re all going through the same thing. The guy who you mentioned was Rodrigo Sanmar. He’s a Mexican film maker. And he was episode 207. And he was such a cool dude to speak to. And if anyone is curious about that line, what it is, as soon as you go and listen to the podcast, it’s literally the first minute I’ve clipped it and put it at the beginning.

    Bill Gasiamis 1:22:36

    Because it’s such a good line. And yeah, it’s true, that’s kind of you get what you focus on is basically what he’s saying. But he has a beautiful way of expressing that I had a really good time chatting with Rodrigo. And he’s like you, he’s physically and spiritually, spiritually and emotionally altered from this, and he is making the best of it. And he’s doing amazing things in Mexico, as well as filming, doing, you know, documentaries, and all the stuff that he used to do.

    Bill Gasiamis 1:23:09

    He’s also building some amazing, sustainable home and all this kind of stuff in a really economical, very eco friendly, and it’s like, wow, you go man. And all this sort of started after the stroke for him. And it’s like, what an amazing thing. I’m not sure I didn’t ask you if it would have been the case anyway. But it seems to be his new passion project. You know, he’s going all out trying to get this thing off the ground.

    Bill Gasiamis 1:23:37

    And I think they’re going to be building hundreds of homes for people with this different idea. So, yeah, that’s Rodrigo. I’ve really enjoyed chatting with you, man. I like your philosophy. I love the way you’re going about your recovery. And I really appreciate you reaching out and connecting with me and asking to be on the podcast. I love it when people contact me to be on the show. It makes me feel like it’s better than dragging people along to the show. You know what I mean?

    Kyle Johnson 1:24:09

    No, absolutely. And that’s why I said earlier, just like I really appreciate the platform to allow people to do this and allow people to express different facets that I think you said earlier, if you haven’t gone through this, the thought process of the random things don’t come into play with the normal person. The normie as you know, cool kids these days a Handi capable.

    Kyle Johnson 1:24:37

    But you know, I think that you doing this alone and allowing people to express themselves, which is hard. Let’s be real. It’s not easy to come out here and to share your story all the time. But it is wonderful for people to hear the emotion that comes out of it in my story is not the same as anybody else’s. But I’m not saying it’s worse. I’m not saying it’s better. It’s just an experience of the human collective that people need to hear, or if they want to totally up to them. So yeah, no, I appreciate you having me on. And I appreciate the time very much.

    The Recovery After Stroke Podcast

    Bill Gasiamis 1:25:18

    You’re welcome. And that thing about the podcast is I’ve done it for my family to hear. They don’t listen. But I’ve done it. Because what I’m thinking is, if they choose to listen, instead of me telling them, which is something I used to do a lot. They can come themselves, instead of taking the merhaba to the mountain, or what is it moving mountain or something like that.

    Bill Gasiamis 1:25:19

    There’s a saying there about, you know, like, not pushing it onto people. It’s just about creating the space for it. And then if people want to come, they’ll come when they’re ready, you know, and I’m really good with that. Really good with that. I have no problem with that plenty of people are coming, you know, this month, we’re on track to get 6000 downloads of the podcast.

    Bill Gasiamis 1:26:07

    Oh, wow. Yeah, that’s never happened before. So I’m pretty excited that we’re going to probably crack the 6000 downloads for the podcast, which means that, perhaps is not 6000 people listening simultaneously. But there’s more than 210 episodes now. And then there’s a whole bunch of content that I can go to. So wherever stroke survivors are in their journey, wherever they are on their journey, they’ll be able to relate to different people throughout the podcast, I want to make it the biggest podcast for the number of stroke survivors that have been interviewed in one place ever.

    Bill Gasiamis 1:26:51

    That’s kind of my goal now. So there is, unfortunately, too many of us, or one in four people are going to have a stroke in their lifetime. And if you think about the size of the population of the planet, where there’s something like 7 billion of us, that’s more than a billion people, at least, are going to have, you know, nearly 2 billion people are going to have a stroke in their lifetime.

    Bill Gasiamis 1:27:17

    So and when I was going through this, there was nothing, I couldn’t go anywhere to get information, there was some amazing communities locally that were doing good things, but there wasn’t enough the way that I like to consume. You know, this type of content about stroke, it was, this to me can be very passive. Because if I’m, if I’m driving up on an episode on or if I’m in the train, I can put an episode on.

    Bill Gasiamis 1:27:44

    And I can just pull on on in the background, if nobody’s home, and I’m not bothering anybody, I can just listen. So that’s kind of the beauty of it, you know, it can be real passive. And how lucky am I to speak to 210 or more stroke survivors, and tell me their version of it just so I can become better about myself and feel better about myself at the same time? I mean, it’s such a gift and a blessing and everything either way, you know, and I know it goes both ways, everyone thanks me.

    Bill Gasiamis 1:28:16

    And it’s like, you’re the same, like, I feel the same for you. This just may as well have been the first episode, it doesn’t make a difference to me, it’s so amazing. I don’t know how much you have to talk about your stroke. But I haven’t got enough about it yet. I’m turning 10 episodes in and I still haven’t stopped speaking about it, I still feel the need to continue speaking about it.

    Bill Gasiamis 1:28:39

    So this is more of a gift because of the other people that are helping me. So that’s not more of a gift. It’s just as much of a gift to me, you know. So thank you, and be well and have an amazing recovery. And enjoy the rest of, you know, the next chapter of your life.

    Kyle Johnson 1:29:04

    I appreciate that. And anybody who’s listening out there is more than welcome to reach out to the person around them and make sure that they’re doing okay, I think that’s one of the pieces we talked about earlier is just making sure that you know the person next to you. So if anything does come up, you can make that decision, that quick decision that could possibly save a life.

    Kyle Johnson 1:29:27

    Because that’s where it all just starts is having those human contexts where you know each other well enough to understand something’s right or wrong. So no, I appreciate it. Thank you very much. And, you know, have a wonderful night and obviously, I’ll be listening to the next ones, the next one after that. So thank you very much.

    Bill Gasiamis 1:29:47

    Thanks for being on the podcast. That’s a wrap. What a cool chat man oh my God.

    Kyle Johnson 1:29:54

    I appreciate it.

    Bill Gasiamis 1:29:55

    What a really cool deep chat. I really appreciate it too. Thanks for watching. Hang on, it’s just a lot of fun being here all the way in Australia and having a chat to somebody from the other side of the planet who I felt like I’ve known for ages. Who I’ve just met and know nothing else about, you know, it’s unreal.

    Kyle Johnson 1:30:15

    Yeah, no, I said before I said on that is like, I know, it’s not just me, I know, you’re getting stuff out of it, too. But at the same time, you know, I think that I’ve been able to talk about it. And maybe express on like, little micro doses here and there. And recently, at that the company I work at, I did like a whole presentation to like 60 or 70 people about, it wasn’t necessarily directly about me, but it was about my experiences and how it can be translated to what we talked about the very end is knowing the people around you.

    Kyle Johnson 1:31:03

    And knowing if something is wrong, you can make that quick decision. And it’s just awesome to be able to, like you said, have these conversations to people around the world at this point in time. And it’s beautiful to have these shared experiences or shitty experiences. Don’t get me wrong, but to have that network of shared experiences is a beautiful thing.

    Kyle Johnson 1:31:29

    And I agree with you. There is not a lot out there for us to research. There’s not a lot out there to listen to. I mean, there’s people on Instagram, there’s, you know, things like that. But to your point that, like, I remember just researching and finding nothing. And asking doctors and they’re like, I don’t know, yeah, go to a PT. Okay, cool. Thanks. So no, this is wonderful. I appreciate it very much. And yeah, that’s the easiest way I can put it.

    Bill Gasiamis 1:32:05

    Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people like you who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. Also, if you are stroke survivor with a story to share about your experience, come and join me on the show.

    Bill Gasiamis 1:32:28

    The interviews are not scripted, you did not have to plan for them. All you need to do to qualify is be a stroke survivor. Care for somebody who is a stroke survivor or be one of the fabulous people that help out stroke survivors. Just go to recovery after stroke.com/contact fill out the contact form and as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you and see you on the next episode.

    Intro 1:33:04

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their 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 1:33:21

    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 1:33:44

    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 1:34:06

    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 medical information changes constantly.

    Intro 1:34:25

    While we aim to provide current quality information in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within 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 Overcoming Multiple Hemorrhagic Strokes & Brain Surgery – Kyle Johnson appeared first on Recovery After Stroke.

    1 hr 35 min
  • Thunderclap Headache and Stroke – Georgie Hennah

    Georgie Hennah experienced a thunderclap headache and stroke due to an Arteriovenous malformation that ruptured when she was 22 years of age.

    Highlights:

    02:26 Introduction

    03:33 Thunderclap Headache And Stroke
    09:01 Possible Symptoms
    19:18 Recovery Support
    27:09 Independent At 15
    34:21 Accepting The New You
    43:28 Stroke Closes And Opens Doors
    56:06 Improvise, Adapt, And Overcome
    1:05:26 You’re Not Alone

    Transcription:

    Georgie Hennah 0:00

    On a smaller scale in relation to like my relationship with exercise. So I was, as I mentioned, like super sporty and into my fitness pre-bleed. And I think in the beginning I unfollowed I mean, I came off Instagram for months whilst I was just, you know, focusing on myself, but when I redownloaded it, I muted everyone that posted that they were going to the gym I unfollowed like so many fitness accounts because I was so envious, that I couldn’t move my body in the way that “normal” people could.

    Intro 0:40

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

    Bill Gasiamis 0:53

    Hello, and welcome to episode 227 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recoveryafterstroke.com. If you would like to support this podcast, the best way to do that is leave a five-star review and a few words about what the show means to you on iTunes, and Spotify.

    Bill Gasiamis 1:19

    If you’re watching on YouTube, comment below the video like this episode and to get notifications of future episodes, subscribe to the show and hit the notifications Bell. Now if you do leave a five-star review that’s going to increase the ranking of the show on the search engines. And that’s going to make it easier for other stroke survivors to find the show.

    Bill Gasiamis 1:42

    And that’s going to help them overcome some of the challenges that they’re going through, especially if they are earlier on in the recovery compared to where you might be. And if you remember how good it was for you to come across this podcast and find it and the relief that you felt and the ability to get some answers to your questions that it managed to cause for you.

    Bill Gasiamis 2:11

    Then that’s exactly what other people are going to feel and this podcast is about making it easier for other people to recover from stroke, not feel so alone. I would really appreciate it if you did leave me a review, hopefully a five-star review.

    Introduction – Georgie Hennah

    Bill Gasiamis 2:26And also if you share the podcast and let people know about it. Now my guest today is Georgie Hennah, who experienced a thunderclap headache and a stroke due to a ruptured AVM age 22. She has had to learn how to walk again and has a great approach to living with deficits that you must hear. Georgie Hennah, welcome to the podcast.

    Georgie Hennah 2:49

    Thank you for having me.

    Bill Gasiamis 2:52

    My pleasure. Thanks for being here. Tell me a little bit about what happened to you.

    Georgie Hennah 2:56

    So, for context, I’m 25 years old, I live in London. But in May 2020 when I was 22 I completely out of the blue had a brain hemorrhage which was caused by a ruptured AVM I had no idea that the AVM was there. This all came out, you know, they kind of suspected it but it took about 24 hours to actually realize that it was due to an AVM because the variety of scans I’m sure you know you’ve done lots of podcasts and I’m not sure what your cause of stroke was.

    Thunderclap Headache And Stroke
    Georgie Hennah 3:33

    But with the AVMs the bleed shows up on CT scan and things but I’ve had to have an angiogram which is shot the blood vessels which then showed the AVM so anyway, completely out of the blue. It was my sister’s birthday, it was during the height of the pandemic and it was towards the end of the day and I was just going to bed and then out of nowhere just had like this massive what I soon discovered to be called a thunderclap headache.

    Georgie Hennah 3:55

    And quickly wanted to rush out of bed to be sick. But then as I went to get out of bed, my left side was gone. This all is like a bit of a blur. Like I was conscious throughout the whole thing, but obviously I had absolutely no idea what was happening. And I had had a few drinks in the daytime I was pretty much sober when I went to bed.

    Georgie Hennah 4:29

    But I think because I’ve been drinking in the day I kind of was like, Oh, am I all of a sudden really drunk again? Like it was very, in a way I actually think that was a blessing because I think that kind of softened the whole blow of it. I think I was more like, oh my god, I’m just really drunk all of a sudden.

    Georgie Hennah 4:47

    Anyway, my boyfriend was with me. He knew that that wasn’t the case. And I mean I was being sick everywhere and yeah, like said my left side had gone. I was like a rag doll basically. And my mum came rushing in. And within about 20 minutes the ambulance arrived. And yeah, went off to my local hospital.

    Georgie Hennah 5:08

    Again, that was all a bit of a blur. I just heard, you know, phrases being like all the medical terms being thrown around. And it was just all like, what is going on and a bit of context as well, I had never really been to hospital before, apart from when I was about, I don’t know, like, nine, I’d broken my arm skiing.

    Georgie Hennah 5:27

    So that was ages and ages ago. And so yeah, it was a complete blur, and then complete shock to everyone. But in the ambulance. That’s when I kind of realized, like, Okay, there’s something about the nature of paramedics, they’re just so calming, and I’m every paramedic I’ve ever met, has just been so lovely that I felt really safe.

    Georgie Hennah 5:56

    But equally, you know, the things that they were saying, I was like, oh my God, this is really serious. But they said, like, bleed on the brain. And my nanny had actually had a bleed on the brain. And she’s no longer with us. But she had one about I don’t know, like 12 years ago, when I was really young.

    Georgie Hennah 6:16

    And that phrase bleed on the brain, like I’d never really had hemorrhage before, you know, when I was that young and stroke. So when I heard them say bleed on the brain in the ambulance, I instantly felt close to my nanny, and it was really comforting. And I think, you know, she didn’t die as a result of the bleed.

    Georgie Hennah 6:37

    She only died a couple of years ago. But I just kind of felt like her presence with me, which was really comforting in that moment. So yeah, anyway, there’s so much going on, but I then 24 hours later got transferred to another hospital, which is really well known for its neurology department.

    Georgie Hennah 6:59

    And it was there that they discovered that it was an ABM had the angiogram. And then they decided that I didn’t need emergency surgery. So they were like toying up between what was the best way of operating, whether it be you know, like Gamma Knife surgery or craniotomy, and they decided craniotomy.

    Georgie Hennah 7:21

    So two weeks post stroke, and I went into surgery, which was terrifying. But the buildup was, obviously when you’re in there, you just get put to sleep, and then you wake up and it’s over. I think it was worse for my family and friends because it was like a seven-hour operation or something crazy. And so then I spent five weeks in hospital and then was moved to another hospital, which is known for its neurorehabilitation center.

    Georgie Hennah 7:52

    And I spent nine weeks there. So I was in hospital for about three months in total. And, I did mention that my left side went but I basically had to relearn to use my left hand or whole left side walk on everything. So that sort of came back very, very slowly up until the operation, I was completely no sensation, no feeling whatsoever. And then I had the operation and then a few days later, that’s when the spasticity started to set in. And then yeah, I’ll stop there.

    Bill Gasiamis 8:32

    It’s alright, I wanted to let you go because basically, you just described my experience. I had an AVM, I had brain surgery, I had to learn how to walk again, use my left side again.

    Georgie Hennah 8:47

    I didn’t realize you had an AVM I follow you on Instagram and I love all your posts and your questions and everyone interacts with it, but I didn’t realize it was an AVM.

    Georgie Hennah’s Possible Symptoms

    Bill Gasiamis 8:57

    I was at 37. So I’ve got a question for you though. So in hindsight, I think there was some incidences before my AVM rupture the first time it bled. I think there was a few incidences that I know now we’re probably caused by the AVM playing up or letting me know it was there other than the thunderclap headache. Do you think now that maybe in the past there was some things that were happening to you that are oh my gosh, that was probably the AVM playing up?

    Georgie Hennah 9:35

    Well, I have thought about this and the only thing that I have sort of thought like right, that must be it because the kind of headache was similar but like not intense. I started like occasionally wasn’t all the time but Only very occasionally, after a really heavy night at uni with friends, I would sometimes wake up with like, I know headache, everyone experiences headaches, but like to the point where I actually couldn’t move my head.

    Georgie Hennah 10:19

    And it wasn’t a migraine or anything like that. But like it was in the exact same space where I had the thunderclap headache. And it was just so intense and it felt like if I moved my head, my whole brain was like, getting bashed around. I can’t really describe it. And at the time, I just thought, oh my God, I’ve got a really, really bad headache.

    Georgie Hennah 10:39

    But after paracetamol and some sleep it went and then you know, I never struggled with headaches, it wasn’t one of those because, you know, some people have headaches all the time. They don’t really know why. You know, I’ve never been like that. So I’d say maybe there’s like a few times at uni where I had this really, really bad headache after a heavy night.

    Bill Gasiamis 11:03

    A heavy night on the drink, right?

    Georgie Hennah 11:05

    Yes. Yeah.

    Bill Gasiamis 11:10

    Your headache was weird. In that, like it was kind of isolated, there was a very weird, isolated spot that would kind of make you aware of it.

    Georgie Hennah 11:22

    Yeah, it was different to other headaches. Put it that way, it’s easy to say now, it probably was to do with the AVM at the time, I just thought it was really, really bad, really bad dehydration, and sleep with a paracetamol, and then it would be gone. So never thought twice about it, really.

    Georgie Hennah 11:46

    But I can like, remember significant moments, you know, particularly, like moths, that kind of thing where they’d be your day where it would be really bad. But I’ve never mentioned it to anyone because apart from like, whoever I was with, might say, look, I’ve got to bang my head, I’ve got go back to bed kind of thing. But I was never worried about it.

    Georgie Hennah 12:07

    Just the day after.

    Georgie Hennah 12:11

    Exactly. So, yeah, but apart from that, I genuinely, genuinely had no free symptoms, like, I’ve always been really healthy, never really been to the doctors that much. You know, I’ve been super sporty, like, you know, not to toot my own horn, but like, I had sports scholarships, and throughout school and college. And, you know, loved the gym a lot of netball and did athletics and things like that. So yeah, it was it was just a complete shock.

    Bill Gasiamis 12:44

    Fair enough. I’ve got kids your age my oldest is 26, my youngest is 22. So you’re kind of in the middle there somewhere there. And your generation, the millennials have this bad reputation for being, you know, kids that are on social media, you know, they’re not in the present time. All these generalizations that hear about kids that are kind of your age.

    Bill Gasiamis 13:14

    And, a lot of those kids are also described as having a lot of personality issues, a lot of psychological issues and all that type of thing. I don’t say that with you, right. But I’m curious about how this thing that happened to you at 22 for this supposedly, snowflake generation. Okay, although there’s all the labels that you hear get thrown around.

    Bill Gasiamis 13:45

    How does it impact your emotional, and your mental health? When one day your quote unquote, normal 22 year old, going to uni, getting smashed with your friends, and doing all the things that everyone does at around that age. And then one day, they’re still doing that, and you’re doing this completely different thing, which is, like you’re kind of fighting for your life, how does that impact you?

    Georgie Hennah 14:16

    Well, a lot, and I feel like there’s been different stages, because it’s been two and a half years now. And I feel like, you know, recovery it’s an ongoing journey will be until, you know, however long I live for. And there’s definitely been sections to it all so far.

    Georgie Hennah 14:39

    And I think in the beginning, I think it was a blessing. And it was really hard as well. But overall, I’ve decided that it was a blessing that it happened during COVID because it meant that, everyone was in lockdown so when I was in hospital, no one was doing anything, so I didn’t initially get that kind of I mean, the longer I was in hospital for rules were starting to relax, it was summer, I remember my friends going to the beach and things like that and feeling envious that like I was stuck in hospital and, you know, my world had been thrown upside down.

    Georgie Hennah 14:39

    But then at the same time, when your life is literally put on the line in front of you. I think it put a lot into perspective for me. And it made me I don’t know, that was sort of like the last thing on my mind. And I was also in this stage of survival mode the whole time I was in hospital.

    Georgie Hennah 15:41

    And I remember thinking and saying to my family, like, don’t get me wrong, there were times I call my family crying. I just missed them so much because I wasn’t allowed visitors. But equally, I was handling it really well. To be honest, everyone was like, Are you Are you okay? Like you are in really good spirits you’re handling.

    Georgie Hennah 16:01

    And so I felt this huge sense of gratitude. Like it really made me realize how many people care about me and like love me like the amount of messages and cards and things like that. So I just felt this overwhelming sense of gratitude. And also like pre-stroke a bit of context of, you know, the kind of person that I was pre stroke, but also still am today.

    Georgie Hennah 16:28

    Is you know, I love traveling. So I’ve been I’ve done a lot of Asia. The summer prior, I’d gone to Bali with my best friend for three weeks, you know, I’ve been scuba diving, love skiing, like I’ve done so many adventurous things. And I was always one, being the kind of person that when I started working, I was 15 I’d save up all my money to go away in the summer.

    Georgie Hennah 16:51

    And so over the years, you know, that kind of built up, and I just had this huge love for travel. And I think that when I was in hospital, it made me realize, you know, okay, I don’t know what my future looks like. Because at one point, the neurosurgeon didn’t think I’d be able to walk again, let alone like, move my hand and things like that.

    Georgie Hennah 17:14

    So, you know, at one point, I remember having a conversation with my boyfriend about, like, Oh, my God, what, you know, okay, I might be in a wheelchair forever. And I remember him, like just being so great. And being like, well, we can, we’re talking about, you know, going, like, he’s got a camper van, he’s like, well we can make the camper van, like accessible.

    Georgie Hennah 17:32

    And we were really like planning for that kind of thing, but being quite positive about it all. And I think when you’re in that survival mode, obviously, everyone has different survival modes. But for me, that’s what it looked like. And then it was when I came out of hospital. And, you know, the reality of what’s happened moving back home to where I previously was, you know, I was this fully abled person.

    Georgie Hennah 17:57

    I remember specifically, like, the first time going down the stairs, when I left home, I actually wanted to run down them. Because that’s what I wanted to do when you’re in hospital, there really aren’t that many stairs because it’s just so accessible and easy.

    Georgie Hennah 18:14

    And so, obviously, the good thing about moving home is that it is more challenging. So your brain’s being, you know, challenged constantly. And, you know, I found that in hospital, I was distracted by the recovery in the sense that that’s where my biggest sort of visible progress was made was in those first nine weeks, because I went from being completely paralyzed.

    Georgie Hennah 18:14

    To then Oh, my God, it kind of felt like each day, there was something new that I was like, Oh, my God, movement, and even the spasticity, like, I had no idea what that was. And even when they explained it to me, I think I was a bit naive.

    Georgie Hennah 18:59

    And so when I’d yawn, and I don’t know if you had this, but like I’d yawn and my arm would like, move. And I’d be like, movement. And they’d be like, That’s just normal. But I’d be like I don’t care, like my arms moving. And so any sort of glimmer of movement, I was like, right, like, we can work with this.

    Recovery Support For Georgie Hennah


    Georgie Hennah 19:18
    And in rehab, you know, the team of physios, the staff, like the occupational therapists, everyone, there was just so supportive. You had this like bunch of cheerleaders around you, basically, that really believed in you. And I think when you see experts who work with people, like yourself and I, day in, day out, when you see the hope that they have in you, that makes you believe in yourself.

    Georgie Hennah 19:43

    And so yeah, it’s just like recovery, recovery, recovery. And then you get home. And then it’s like, Oh, my God, I’m in this by myself now. And even though I had physio, I think had a few weeks gap. I And then I started physio and although I was doing it once or twice a week, you know, I went from having this timetable in rehab where I was having like, four hours of rehab a day.

    Georgie Hennah 20:13

    Seeing different people working on different things, you know, using different equipment to then being at home. And I, obviously, I like, didn’t have a job at the time, like I work with my work really great. And, and so that pressure was removed, but then I had all these hours in the day. And I felt like when I wasn’t doing anything, I felt guilty, I was like, I need to be doing as much as I can to make this recovery better.

    Georgie Hennah 20:38

    And then there was definitely this whole stage of, and I feel like in the grand scheme of things, I actually accepted what happened pretty quickly. I feel like, and I think that’s what’s enabled me to kind of get to where I am today mentally, because I think, accepting what happened enabled me to just kind of let go of a lot of things and focus on what I needed to.

    Georgie Hennah 21:05

    But we can come to that in a minute, but was gonna say was, there was definitely a period where I was like, I can’t be happy until I’m better. And I think it took a bit of time to realize that, you know, first of all, I didn’t actually go and look on Instagram, it took me about a year I created it like my journey account when I was in hospital.

    Georgie Hennah 21:31

    I didn’t actively go and seek other stroke survivors for about a year because I personally, I think I just like wanted to make my recovery my own. And, you know, no doctor could tell me, like, what my future was gonna look like. So I was like, right, I’m just gonna write my own future kind of thing. And I know everyone has different ways of coping, and I met some lovely people in hospital that I was in touch with.

    Georgie Hennah 21:55

    But yeah, at the beginning, and I’m a very motivated person, very disciplined. And I think, you know, that has its pros and cons. That’s been my biggest strength throughout this recovery journey. But it’s also been, like my biggest. I don’t know, yeah, maybe weakness, or I don’t like the word enemy. But sometimes it’s been my biggest battle is myself. And how hard I can be on myself,.

    Bill Gasiamis 22:24

    I think there’s a really good side to being hard on yourself for the right reasons. If you’re being hard on yourself, just because you want to give somebody hard time and it happens to be you well, and there’s no real outcome for it. And then that’s really hard to overcome. And that’s a cycle that people if they get stuck on that it’s destructive, right? But if you’re hard on yourself from the point of view of, you know, I’ve been sitting down and watching Netflix for four hours.

    Bill Gasiamis 22:54

    What am I doing? Get off your ass and go and do something, and then you do something, and then that’s something makes you neurologically tired or fatigued or whatever. I think that’s good, because what you’re doing is you’re pushing yourself to get back to neurological fitness, and to achieve overcoming all the things that you need to overcome, and it takes time, and you have to push the limits.

    Bill Gasiamis 23:19

    If you don’t push the limits, you don’t know where they are, and you don’t know how far you’ve come and you can’t fine-tune, your recovery. So I think that kind of being tough on yourself is good. I’m not motivated, but I’m gonna get up anyway. That’s really good. But other people who hate on themselves by saying you’re an idiot, you’re stupid, or they hate the fact that they found themselves in the situation, and they blame themselves and all that type of thing. It’s really, really destructive. And that’s not going to help anybody in any part of the recovery at all. I like your approach to the doctors.

    Intro 24:06

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

    Intro 24:31

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

    Intro 24:50

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your Recovery, head to the website now, recoveryafterstroke.com and download the guide, it’s free.

    Bill Gasiamis 25:09

    No one’s gonna tell me what I am and what I’m not going to do, how far I’m going to go and what I’m going to achieve. I love the fact that you’re working at 15, a 15, you’re getting schooled by people who really don’t give a shit about you, other than they want to make the most money out of you, the 15 year old who they’re paying the least amount of money, you know, they want to make profit off you.

    Bill Gasiamis 25:38

    So what they’re doing is they push you, they train you, they teach you. And they’re taking advantage of the fact that you’re 15. And they’re paying you a small amount of money. And that’s forcing you to learn what the world is about. It’s forcing you to grow up, it’s forcing you to learn the kind of people you want to look up to, it also gives you the opportunity to create boundaries from people that you don’t like.

    Bill Gasiamis 26:08

    And people’s ideas that are not aligned to yours. And it seems like a trivial thing to get a kid a job at 15. But it’s such a massive way to bring kids at 15 from being an adolescent from being a teenager, to beginning that evolution and the growth and the wisdom that comes with interacting with people a lot. And it makes you less naive.

    Georgie Hennah 26:41

    For sure, and I remember it was my dad, we live really close to a pub. And, you know, because we live just up the drive from them. We knew the owners quite well. And I remember my dad, as soon as I turned 15 he was like, right, go down there and ask for a job. And I’d obviously being 15 like oh, no, I put it off. I’d call them they wouldn’t answer. And then I’d be like, okay, they didn’t answer and but like, call them again.

    Independent At 15 Georgie Hennah
    Georgie Hennah 27:09

    And he really pushed me to go and get a job. But you know what, like, it started off as I just worked like four or five hours on a Sunday, serving roast dinners, and you know, but you just meet so many different people, and it got you out of the house. And I really, you know, learn I really didn’t earn that much money. But when you’re 15, you know, getting 20 quid on the weekend, you know, that’s huge.

    Georgie Hennah 27:31

    So, you know, I learned the value of money. And obviously, at that age, you’re not paying for any bills or anything like that, and not even really spending money on, you know, anything expensive at all. So I would just save most of it for them the summer. And you know, at the time, I had a friend who had a holiday home, so I’d saved to like, you know, for flights to go there and things like that. So yeah. And then it was kind of like, right, that summer was great. I want next summer to be just as good. So that was keep the momentum going. And so I have my dad to thank for getting me out of the house to go and get a job at 15.

    Bill Gasiamis 28:08

    Yeah, it’s kind of like independence, right? It starts building the understanding of what independence is about. And then when you end up being home, well surrounded by family, but alone in your recovery. That’s when your skills that you learned a few years ago, start to come into application, and then you go, Okay, I have to be I have to drive myself, I have to be self-motivated. I have to use the skills that I did when I was at the pub because at the pub.

    Bill Gasiamis 28:40

    If I wasn’t self motivated, the last thing you wanted was somebody telling you 15 times a day go to the counter, pick up a meal and serve it. You just needed to know that. That’s what you had to do. So it’s kind of like an instinctive thing that you have to develop. That’s not really instinct, you have to think about it or the first few times and then later, you can apply it to other things in life.

    Bill Gasiamis 29:07

    I wanted to focus on this part of the conversation because I mean, it’s a weird thing. You’re an adult at 22. But it’s such a young age to have to go through something so life changing. And I remember how dumb I was when I was 15. Although I worked and did all those things are still the you know, the gap between 15 and 22.

    Bill Gasiamis 29:33

    That’s not a lot of time to grow a brain and be able to handle dramatic things. Maybe it’s different for girls. I don’t know if that actually applies. But I just love the way you’re talking about how you went about your recovery and what you were thinking and your mindset seemed to be really solidly grounded in this foundation that I think played a massive role.

    Georgie Hennah 30:04

    Yeah, and I think, you know, I’ve never really made the direct correlation between, you know, having a job so early, but I’ve always been, and I think I’m very similar to my dad, in this sense, you know, I’ve always been get up and get things done in the morning. You know, I’m a planner I’m organized, you know, get my clothes out the night before, you know, just always been quite routine focus.

    Georgie Hennah 30:32

    And my friends are always telling me anyway, before all of this, that would always be, you know, the friend that would look on the brighter side, or have that kind of mindset. And I don’t think I just magically, you know, had this stroke, and then all these qualities appeared, they were actually a part of who I was, but the stroke has enhanced them and actually put them to really good use, and they were being obviously use well, throughout going to uni, and things like that.

    Georgie Hennah 31:02

    But I feel like it’s really brought out qualities within me that, you know, yeah, have just completely got me to where I am today, which has been a benefit for sure. We’ll do that. Yeah. But it’s not to say, you know, it’s bought out, it bought out those qualities, but then there’s obviously the whole topic of, you know, feeling well, the grief that comes with it as well, and losing parts of your identity, as well.

    Georgie Hennah 31:36

    And, I mean, that’s a whole lot. I could speak for hours on that as well. But I feel like that’s been a whole journey. And it still is, but equally, I’ve definitely I moved out again, while I had to move home. When I had the stroke, I was living at home anyway, because the pandemic, I was in London before then moved home had the stroke was there for two years.

    Georgie Hennah 31:59

    And then I actually had moved back out to London, only about seven weeks ago. And I feel like, you know, and I went traveling round Borneo in June with my boyfriend, I’ve basically just been like, you know, stepping out of my comfort zone, and my stroke comfort zone, and have actually come to realize that parts of me that I thought were dead, or thought I no longer had access to have actually been reignited in situations that you don’t get when you’re just sat at home or, you know, in everyday life.

    Georgie Hennah 32:37

    And so, you know, obviously I mentioned that I was really into travel. So then when I went abroad, and especially somewhere like Borneo, where it’s so stimulating, you know, the culture, the wildlife, the temperature, like there’s so much going on and being with Richard, it was just so freeing, and it made me realize that no matter my physical abilities, which you know, I mean, I don’t see myself as disabled, because I feel very able with what I can do.

    Georgie Hennah 33:06

    But my I still have muscle spasticity on my left side, so my arm gets really tense. And I’ve got a bit of foot drop, so I can’t actually lift my foot up and outward. So I use electrical stimulation. And so I have to be steady. And so despite the physical restrictions, you know, I realized that I could still go to Borneo, and I can still experience this new culture and all these amazing things.

    Georgie Hennah 33:33

    And, ignited feelings that obviously I hadn’t felt in a while because of COVID. And because I’m stuck at home. And so I was like, Oh my gosh, there’s parts of me that are still there. And so since then I really been just, you know, leaning into stepping out of my comfort zone and it was actually Borneo that made me realize like, Okay, you’re way more capable than you realize.

    Georgie Hennah 33:56

    Let’s move out. And so that was what got the ball rolling. And then it was in Yeah, that five weeks before I actually moved out. We found a place. And then since I’ve moved to London and just been living independently, again, well, for the first time since the stroke. It’s just again, it feels right. It feels normal. There’s still things I have to think about this still, you know, rehab that I do.

    Accepting The New You


    Georgie Hennah 34:21
    And it’s just adapting. And I feel like there’s Yeah, been parts of me that have been reignited. And I’m like, I just feel like I’ve got this new lease of life again, which is really promising. And I feel like, you know, that’s kind of the message I’m trying to put out there on my Instagram and what I help other people with is, you know, whatever. I think there’s, you know, we’re not the same person that we were pre-stroke.

    Georgie Hennah 34:47

    We’re not. And that’s okay. And it’s coming to terms with what’s happened, but also realizing and I know everyone’s situation is very different, and I’m speaking on behalf of my own situation, but I also see it within other people as well. It’s coming to accept and then adapting when necessary. But realizing that, you know, there are still parts of the old you that you can access and reignite.

    Georgie Hennah 35:17

    And the ones that you can’t, that’s because you’ve grown out of that. And it’s time to like, step into the new you. And so making that connection, and it’s been like a, you know, a journey, like it’s ongoing, and it still is, and don’t get me wrong. You know, I was only a few months ago, where I had a whole period of grieving again, which really took me by surprise.

    Georgie Hennah 35:41

    So like, I haven’t felt like this in ages. But at the moment, I’m feeling really, really comfortable in my own skin and just kind of feeling really good. And it’s sort of it’s all been through stepping out of my comfort zone and reigniting parts of me that I thought were long gone.

    Bill Gasiamis 35:59

    Is the comfort zone surrounded by fear when you’re there. It sounds like it’s, you know, they say, the comfort zone, it sounds warm and fuzzy and cuddly and all that, but it’s not really. It’s actually, I feel like if I’m in my comfort zone, I’m overthinking the next step. I’m fearing what’s out there. I’m anxious about what’s out there. That comfort zone is not comfortable at all, it’s so freakin uncomfortable.

    Bill Gasiamis 36:28

    And the release from all of that anxiety and fear and concern and overthinking happens when I crossed the threshold, you know, and that’s kind of like, I look back and go, ah, actually, that wasn’t that bad. No, no, no, I ever thought that or why did I take so long? And oh, my gosh, I’ve learned something new. What you said about identity is people put their identity to rest, like they completely totally put it to rest when they’ve had a stroke, because they’ve got a new thing that they have to grapple with.

    Bill Gasiamis 37:12

    And, and they’ve got to merge it into their, “old identity”, which is not their old identity. It’s just still their identity. But they also take a short term view. And they see that pause that’s happened right now as being forever, and there’s no light at the end of the tunnel. And it’s not true, right. So I’ll give you a classic example. My dad’s been really healthy his entire life.

    Bill Gasiamis 37:41

    And he’s still is he’s 80 next month. And he’s got some usual health issues in at 80, the standard stuff. And he had a knee surgery probably about six years ago, seven years ago. And he was off his feet because he had to recover and rest his leg just for that three, six month period, because he had a new knee.

    Bill Gasiamis 38:10

    And he couldn’t come to terms with the fact that now it was time for sitting down resting and not doing all the things that he always did. But that drove him nuts. And you could see his mental health really declined rapidly, just simply because of this time of rest and recuperation so that when his knee is better, he can be back to normal.

    Bill Gasiamis 38:36

    But trying to bring him out of that kind of funk. And, and out of that headspace was really hard. He used to get really emotional and upset about it. And he thought he’d never walk again, when every other person who’s ever had a knee surgery, like his has walked again. And it was really difficult to kind of shift.

    Bill Gasiamis 38:58

    But he had such a long time of experiencing his body in a certain way that this new thing he couldn’t come to terms with and he couldn’t say to himself, I’m a granddad, I pick up kids from school. I do these tasks for my wife and for my sons and for whatever. And I rest and recuperate when it’s necessary.

    Georgie Hennah 39:30

    No, it’s so true. And I think it’s so complex. And I think people do it subconsciously without even realizing that they’re like, I specifically remember looking at pictures and videos of me pre-bleed, and there would always be this like, pre-bleed post-bleed me.

    Georgie Hennah 39:56

    But now I actually see myself as just this continual like, I’m still the same me, I feel like that separation is actually, there’s no separation anymore, I just see it as different stages of my life. And it’s so freeing to get to that realization, because before I look at videos and photos of me pre bleed, I would feel so detached from it, that I would look like, I feel like I’m actually looking at a completely different person.

    Georgie Hennah 40:22

    And that was what was really upsetting. Because you just want to like, click your fingers and go back to that time. But then, you know, as time goes on, and again, as much as you have to do your own self work and things like that time does also play a massive part in it, because over time, you experience more things, you’re exposed to more things which slowly boat, you know, piece by piece, help you rebuild.

    Georgie Hennah 40:47

    And, like, you know, there’s so much to it, but it helps you sort of get to where you are today. But I feel like as I mentioned that over the last, I’d say even probably this year in particular, because a COVID is not as prominent, you know, society’s got more freedom now anyway, you know, I’ve been abroad again, since which sort of reignited that spark of travel, which, by the way, I was super anxious about beforehand.

    Georgie Hennah 41:15

    And going back to that comfort zone thing. Yeah, I think when something to do with your health happens to you, you know, there’s no one can tell you, like, no one can calm you down when you’re feeling anxious about your health, because your health, like, you know, someone say all the chances are so smaller, but given the chances of a 22 year old having a ruptured AVM.

    Georgie Hennah 41:38

    And it happened to me. So, of course, I’m gonna worry about X Y, Z. But you know, so I just gone off on a complete tangent, I think, why was trying to say was this separation between like pre-stroke, post-stroke I think it takes a lot of a lot of coming to terms with but the more you can put yourself out there, the more you can continually step out of your comfort zone, the more you’ll realize you’re capable, which will then you know, make you want to keep going and going out your comfort zone.

    Georgie Hennah 42:13

    And then before you know it, you are doing things and experiencing things that you would have pre-stroke, I think some people right off completely, and they think they will never be able to enjoy anything again, because they’re now in this box. And it’s like, you know, obviously everyone has different relationship with labels.

    Georgie Hennah 42:35

    But for me having a stroke is just something that’s happened to me. And it’s a part of, you know, this big journey. And, yeah, it’s a crazy ride. It’s scary to let go of, you know, pre bleed, and like that sort of, for me, obviously, I was so young.

    Georgie Hennah 42:35

    So I hadn’t, I had a really smooth upbringing, and, you know, great friends and great relationships and things like that. So I really did have a smooth ride up until I had the stroke. And so I was clinging on to that for for a while, but I think I quite quickly realized to let go of that, because that was causing me more pain. And that was stopping me from enjoying life for what it was and being present and all those things.

    Stroke Closes And Opens Doors

    Bill Gasiamis 43:30

    Stroke closes doors, 100%. There’s no doubt about it. But it also can open doors. And for me, I mean, and I get people who are listening and going well, but your strokes not like mine, or you’re not as bad as me or all those things. Well, I’ve been going through this for 10 years. And I could have had mental health issues.

    Bill Gasiamis 43:55

    I could have had emotional issues. I could have had all sorts of issues about fear and not overcoming, not facing my fear I could have, but I wouldn’t got the help I needed. I went and got emotional support well and got counseling. And I still go to counseling, I still speak to people who support me emotionally properly, not people who don’t understand what emotional support really means in his right.

    Bill Gasiamis 44:18

    I’m talking about people who, who can guide me through my emotional turmoil as well as my mental health turmoil, right? So for me, it’s opened the door of this podcast that never ever would have existed if I didn’t have a stroke. No, ever, I would not have in a million years thought that what I should do in my life is find a topic and start a podcast about it. I didn’t feel like I had experience in anything that I was qualified to talk about.

    Bill Gasiamis 44:52

    And I never thought I would so I did it. I didn’t do it until I now I’m qualified to talk about my experience with something that is really dramatic, that makes a real difference when other people hear me talk about it. And as a result of that, it allows me to then also close a gap that I felt that it existed when I left hospital when I went home, which was why the hell is nobody talking about this?

    Bill Gasiamis 45:25

    How is it that I don’t know other people have had a stroke, and how they’re overcoming that and what they’ve learned from it, and how they’ve grown and evolved their identity from it. And it’s, for me, this is a ridiculous idea that I had to go through something so dramatic to get to this side. And this side is all pushing through all of those barriers of I’m going to speak about stroke, what are people going to think of what to say? And oh, my gosh, they’re going to harshly judge me. And they’re going to who knows what.

    Bill Gasiamis 46:04

    And I paused the podcast for a little while, because I was afraid to record new episodes. I was afraid to get rejected from people who I reached out to to be on the podcast. And it’s like, well, how weird is that? Why would I be afraid for somebody to say no to a podcast, it’s not a date, I’m not 14 and asking the girl that I am in love with, to come on a date with me.

    Bill Gasiamis 46:33

    And if she says yes, I’ll be heartbreaking for the rest of my life. It’s a podcast, it’s a conversation, we get to learn. And we get to therefore help each other and then help other people who are listening and learning from us. And that’s stroke opened up all those possibilities for me. And I don’t know what your problem is, and how bad your stroke is and what it’s caused for you.

    Bill Gasiamis 46:55

    But if you just get curious about what doors can be opened, and you open them, and just peek through them at the beginning, not even go there, just open it a little bit and just have a cheeky look in, you might be amazed at what it can do.

    Bill Gasiamis 47:14

    And it sounds like for you going and having their first trip after stroke, which was really hard for me too, because my wife and her amazingness decided that our first trip was going to be the other side of the planet Melbourne to New York. And we had to travel for almost a day to get there. And I felt like if I’m traveling a day to be away from my hospital, and my doctors and all that kind of stuff.

    Bill Gasiamis 47:42

    And I’m in this other country where I don’t know anybody. And something happens to me. What the hell like it’s going to be terrible. What am I going to do? How am I going to manage that? How are we going to keep me healthy and well and alive. Last thing I want to do is die overseas, you know. But that can happen to a normal person, you can get hit by lightning overseas, anyway.

    Georgie Hennah 48:06

    Exactly. And that was exactly the thing with me. I mean, when we booked the trip, we were originally going to Sri Lanka, but then literally a week before we were due to fly, see, there’s been a huge economic crisis over there, and the government has actually advised not to travel there.

    Georgie Hennah 48:21

    And we had, you know, booked this for a while, and we really still wanted to do a big trip and go sort of Asia way. And we looked at like, cheapest flights and flights at the moment are just crazy everywhere. But Kuala Lumpur was, you know, our sort of like, next best thing and my boyfriend’s got family in in Borneo. So that’s why we chose to go there.

    Georgie Hennah 48:41

    Obviously, that is far from the UK. And I haven’t mentioned this yet, but about nine months after surgery, I actually started getting focal seizures. And so I mean, that for me was actually more traumatic than the whole stroke itself. And, and that that is something that I think is caused biggest anxieties around my health because I feel like with the AVM I’ve seen on scans, it’s been physically removed, and I’ve had that confirmation that it’s gone.

    Georgie Hennah 49:17

    Whereas seizures, obviously, they’re unpredictable. And so Touchwood I’ve only had two and since I’ve been on tablet like medication, haven’t had any, but going to Borneo, which was eight hours time difference. And I’m taking this medication at set times morning and night.

    Georgie Hennah 49:35

    You know, there was that whole anxiety as well but I can’t, you know gotta make sure that I adjust my timings before I go and this, that and the other but I realized that the first time you do anything, especially that big is gonna be scary. And if you don’t do it, then you know, your world just stay so small but like you said, You’ve got to lean into these things because you don’t know what’s out there.

    Georgie Hennah 50:00

    When you open one door like more doors open, so for me obviously going to Borneo and then it opened a whole new door of like moving out. And, you know, that’s opened a whole chain of doors. But also, I’ve just lost my train of thought. But yeah, stepping out your comfort zone and, the worries are managing that.

    Georgie Hennah 50:20

    But that’s one thing that I kept telling myself was, right, you’re not the only person in the world with a health condition, you’re definitely not the only person in the world that has to take medication that travels, like the doctors have said, you can travel. So you know, and I just did everything I could to prepare.

    Georgie Hennah 50:40

    So I spoke to like an epilepsy clinic got their advice on, you know, take, like adjusting my timings of medication. You know, they were super chilled about it on the fence. I was like, Okay, this is, you know, not that bad. I printed out every document that I needed to just in case and, you know, it was fine.

    Georgie Hennah 50:57

    I wrote about this on my blog, actually, because I wrote about my travels. But I remember getting on the plane and just as soon as we were in the air, and I realized that my head was gonna explode because that was another just like, catastrophic anxiety is like, Oh, this is my head going to be okay, like going up in the air?

    Georgie Hennah 51:18

    But as soon as we get up in the air, I was so excited. And I felt like I was literally living the metaphor of it’s not even about the destination. It’s about the journey. And it sounds really cringey. But just the whole I’m on a plane, and also forgot to mention, we just so happened to fly on the two-year anniversary of my stroke.

    Georgie Hennah 51:47

    So that was a coincidence. And yeah, so I was in the air. And I was like, Oh, my God, two years ago, you know, my whole world has flipped upside down. And today, I’m getting on a plane and going across the world, you know, and I was able to go snorkeling and, you know, obviously, take precautions.

    Georgie Hennah 52:07

    And don’t get me wrong, maneuvering on the boat and getting on and off the boat was not pretty or elegant. But I was like, I’m gonna make this work. And, you know, I got to experience some amazing things. And I think, yeah, you just got to trust yourself, because you’re always more capable than you think.

    Bill Gasiamis 52:26

    Yeah, I think people notice people who are physically abled notice disability more, when somebody is not confident, like you said in their own skin. And, and has, you know, trepidation about being exposed on, for example, in your perfect situation, like on a boat, where your physical limitations make it a little more whatsoever, like, you got to take a different approach to getting your gear on and getting in the water and then getting out of the water.

    Bill Gasiamis 53:09

    It’s kind of different. But I think when you’re the person that’s overthinking that and concerned about that. I think you make disability more visible to other people. And I’m not saying you shouldn’t be cautious but I feel like there’s a mindset to that as well. I feel like how you hold yourself and express yourself and think about yourself and talk about yourself, even though your body is different than what it was before stroke.

    Bill Gasiamis 53:50

    Allows the person to make a more awkward for themselves in that situation. And I say that because one of my favorite and I love everyone who I’ve had on my podcast, okay, so please, nobody take it the wrong way. But one of my favorite episodes was way at the beginning like very, very early. It was episode 47 with Maggie Whittum.

    Bill Gasiamis 54:17

    And Maggie was an actor, and I think a model and she had an AVM and it bled when she was 33. And it impacted one side of her body really dramatically. And she went through all the hell that we all went through all the emotional or the mental anguish all that stuff.

    Bill Gasiamis 54:42

    And she has probably pain and suffering from past spasticity and all the stuff that we hear about that’s common. But in her identity was is real desire to be an actor to still do the stuff that she always does. And she found near where she lives the most amazing organization, it’s called The Phamaly Theater, I think it’s in California, somewhere, it might even be in Los Angeles, that put on productions, and all the people, are people who are somehow physically disabled.

    Bill Gasiamis 55:32

    And she’s done a documentary. And she has done all these things that are related to how she experiences the world. And even though, if you listen to the episode, you know, she’ll explain the difficulties and the challenges and all the problems and all the stuff, even then she still goes about participating in life fully.

    Improvise, Adapt, And Overcome


    Bill Gasiamis 56:06
    And that is what I’m kind of saying like, and that makes it so much better when you have to deal with all the physical limitations of what a stroke has done to you. And it’s not easy for her to physically participate in those types of things. And in life, to that extent, it probably was easier physically. But within her, there’s this innate need to continue to do that.

    Bill Gasiamis 56:38

    And she’s just found a way to do it. And I had the pleasure of viewing her documentary before it was released. And I’m not sure if it’s actually released yet, like, properly. And she asked me to review it and tell her what I thought about it. And it was so amazing to see that and it’s such an important message that needs to be said, and it can’t be said by “abled-bodied person”.

    Bill Gasiamis 57:11

    Before stroke, I could not represent this community, I had no way of doing that. And now we can, so she’s doing amazing work, really important work, and she’s living life fully. And she has a desire to help other people. And that helping other people has kind of made projects that should be impossible for her possible, and that’s doors that open for her. But other ones were closed her career in the able-bodied acting world has ended. But she shifted it.

    Georgie Hennah 57:51

    Yeah, I feel like, you know, you’ve just got to be able to get over the idea that, for me, I realized, as soon as I realized that I can still do things, but okay, they might not be how I pre-stroke envisioned, but I’m still able to do them, that my body, you know, there might be different, like limitations in my body and things, but it’s letting go of the idea of like doing things perfectly.

    Georgie Hennah 58:25

    And enjoying them for what they are and with, like, on a smaller scale in relation to like my relationship with exercise. So I was, as I mentioned, like, super sporty and into my fitness pre-bleed. And I think in the beginning, I unfollowed I mean, I came off Instagram for months, whilst I was just, you know, focusing on myself, but when I redownloaded it, I unfollowed I muted everyone that posted that they were going to the gym, I unfollowed like so many fitness accounts, because I was so envious, that I couldn’t move my body in the way that, you know, “normal” people could.

    Georgie Hennah 59:05

    But then I’ve managed to I kind of had this realization because I decided one day to just put on a hit workout. And, and just kind of give it my all I had to make adaptations. I couldn’t do the exercises properly. But you know, the music was going I was just getting my heart rate up. And you know, left, my left arm was trying to get involved in it. And it probably looked hilarious for anyone. No one was watching, thankfully.

    Georgie Hennah 59:30

    But I then realized that I could get this same physical biological reaction from just moving my body vigorously. Like no matter what it looks like, I can still get the same physical effects that pre-bleed Georgie could have got and I realized that I then shifted my whole focus on you know, obviously I’ve still got goals and things within my recovery. But when I do exercise, I think about moving to feel good.

    Georgie Hennah 1:00:00

    Rather than to look good or whatever, you know, because there’s a whole societal, you know, I think, bad relationship with exercise and stuff anyway. But I think, yeah, focusing on how it makes you feel, really removes that sort of awkwardness and lack of confidence in how, you know, the way my body moves now. And since I moved to London, I’ve joined a gym.

    Georgie Hennah 1:00:24

    And, you know, I think, if I’d have let my fear of how my body moves, well, I wouldn’t be at a gym, if I’d have let that fear completely take over and going to the gym as part of my weekly routine. I see people I’m, you know, and so I think again, that’s something that breaking through that fear. And also, yes, it’s going to be scary going to the gym every day, to be honest, before I’d even had a stroke, right?

    Georgie Hennah 1:00:47

    Joining a new gym, I’d feel scared because you go there, and you know, you don’t know where the equipment is, and things like that. So, yeah, I think, definitely that lady sounds super inspirational and I love I can completely resonate with her mindset and how she’s doing things, because I think I’ve just always thought, you know, there’s no one.

    Georgie Hennah 1:01:07

    And I think this is where denial can come in handy at the beginning. Because I was in a bit of denial at the start is like right, you know, recovery, like Sony and take a few months, then we’ll be back to normal. And but I was like, I’m gonna write my own story. And yeah, and it’s just opened doors and, and here we are today.

    Bill Gasiamis 1:01:27

    I love the gym thing, because self doubt at a gym. I mean, that happens to most people. Especially when you’ve got the, you know, the meathead in the mirror, you know, doing these runs, and you know, looking amazing and whatever. And then you realize, in order for me to be like that, I’ve got to put in seven hours a day, seven days a week and stuff that I’m not doing that I can’t be doing that I’m doing it to gain.

    Bill Gasiamis 1:01:52

    For me, before I go to the gym, I’m doing it to gain strength. That’s it, it’s just muscle strength. And everything else that comes with it is a bonus, right? So I don’t enjoy going to the gym like I used to either because my left side is weaker. So I don’t, I feel uncomfortable, especially when I’m doing dumbbell bench press, bench press or dumbbell presses, right. And it’s like, my left side doesn’t want to hold the weight there.

    Bill Gasiamis 1:02:22

    But my right sides going well. Come on, let’s go again and the left sides game, stop, stop, you idiot, stop. So it’s really understand, I understand, like, there’s a lot going on, when you go back to the gym safety is an issue. If you, if you compare yourself to other people, that’s going to be an issue.

    Bill Gasiamis 1:02:45

    But if you change the reason why you go because exercise is really important for a healthy brain and a healthy body and to keep everything flowing and working in your system. If you change the reason, then you stop comparing yourself and stop looking and stop trying to achieve something that’s always been unachievable for you because you’re not prepared to do the work anyway. And, and you get out of that kind of negative application, I suppose of the gym, and you start doing the gym, for what its purpose is to keep people healthy, and physically strong.

    Georgie Hennah 1:03:30

    I think I think even, you know, before I had the bleed, I’ve kind of got bored at the gym. And when I was running a bit more. And I had to remind myself, before you had the bleed, like you weren’t even interested in the gym anyway. And I think when the choice is taken away from you, and I’ve only just started going back to the gym, because the last couple of years, I’ve been really working on my fine tune movement to make sure that you know, form because obviously, there’s no point in going to the gym and trying to build your strength if you’re doing it completely wrong.

    Georgie Hennah 1:04:06

    And so I mean, patience is something that had to really work on as well. But I’m now at a place where I’ve got a gym program, it’s been approved by my physio and stuff. And, you know, again, I’ve had to kind of like, put my ego to one side and get over the fact that you know, I’m not lifting as heavy, anywhere near as heavy as what I used to. But again, don’t for what it makes me feel.

    Georgie Hennah 1:04:27

    And also when you actually remove like the weights and things like that, at the end of the day. I’m doing what everyone else down to the gym is doing, I’m going with a bit of a program going there to feel good to move my body and I leave it that’s what everyone else is there to do doesn’t matter. You know, everyone in the gym is focusing on themselves anyway, because everyone there is you know, regardless of you know, what you look like or how strong you are, everyone is only focused on themselves.

    Georgie Hennah 1:04:55

    And so when you start thinking like that, that can you know work wonders. And like I said the first few times it feels a bit scary and daunting. But you know, I’ve been going there for a couple months now. And yeah, I just, you know, If anyone looks at me funny or realist, they might not even it’s just your interpretation. I think a lot of the time, how you think people think is actually just a projection of how you feel about yourself? Yeah. So yeah, but no, it’s been good.

    You’re Not Alone

    Bill Gasiamis 1:05:26

    One of the other awesome people I’ve had on the podcast is Kelly Studebaker, she was on episode 106. And she’s a powerlifter, but she has rightside spasticity. And she’s very much unable to lift weights with her right side of her body. Her arm is very tense, her fist is clenched, and her walk is affected, right.

    Bill Gasiamis 1:06:01

    So she can’t do the regular stuff. But she’s a one sided powerlifter. Her left side is jacked, it’s like, huge, and her right side is not. And it’s a completely different physique on each side of her body. And she has been recovering from a ruptured AVM from the age of 11. And she’s just gone stuff it, I’m going to become a powerlifter. And she also knits scarves.

    Georgie Hennah 1:06:39

    Knitting is really good for the brain.

    Bill Gasiamis 1:06:41

    Yeah, and hats and stuff like that. So you kind of, there are people out there that are doing this, and you’re not alone. It’s not, you’re not just the only person on the planet that’s going through this. And if you search, you will seek them out, you’ll find them. And, and they’ll teach you there. And I and so many people that have been through what we’ve been through, want to help, and they’ll teach you how they got over it over their issues or how they overcome those challenges.

    Bill Gasiamis 1:07:13

    But to see, like, I can’t imagine powerlifting ever in my life, not before stroke, not after stroke. And then to see somebody doing it the way that Kelly does, it is so cool. It’s impressive, even, like it’s just impressive, just full, full stop and forget about all the other stuff. But then when when I think about, you know, my deficits, then it’s even more impressive. Like it’s super impressive. I love it. And it’s one of those things that certain people told to short and be able to do.

    Georgie Hennah 1:07:52

    Well, and do you know what? That’s the biggest? I think a lot of people I’ve spoken to stroke survivors who have been told by doctors, by health professionals, you know that you’ll never be normal again, or whatever phrase that you know, and I think sometimes we forget that they’re speaking to, they don’t realize how much influence they have on someone’s belief, especially in the early stages.

    Georgie Hennah 1:08:21

    And as I mentioned, I felt fortunate that the physios that I was surrounded by like I they believed in me when I didn’t believe in myself, which then fueled you know, the whole thing and my physio since I’ve been out of hospital. My god, there’s she’s having me doing things that I genuinely like laughed at her. I laughed in her face when she told me to start running.

    Georgie Hennah 1:08:42

    I couldn’t even walk properly yet. And she was like, right, we’re going running today. And I literally was like, Are you joking me? But because she believed in me. I mean, I was terrified. But because she believed in me, I was like, right, okay, I’m so scared.

    Georgie Hennah 1:08:55

    But like, I’m gonna do this, because, you know, and again, that’s just helped my recovery so much, because, you know, I can’t necessarily run properly, but it’s, you know, gets your I don’t know the science behind it, but it gets your neurons and like taps into those more sort of like rhythmic natural patterns which are stored in our central nervous system, I think as opposed to our actual like, cognitive thinking.

    Bill Gasiamis 1:09:24

    First it increases your dopamine levels, it increases your endorphins, it increases all the positive things that you know and hear about about you know, what makes you happy and what makes you feel alive and what makes all your organs work and what makes you have a good night’s sleep and what gets your digestive system going like impacts us in so many positive ways.

    Bill Gasiamis 1:09:49

    It’s just ridiculous. And there’s so much written about it. It’s so important for brain health. It’s the most important thing. It doesn’t matter how fast you are, you could just be somebody that’s fresh out of stroke in a wheelchair, you can only move one side on your body. And what you’re doing is you’re in your wheelchair and you have attached just and you grab the pole with, with your other hand, and you’re just pushing and pulling yourself away to and from that pole.

    Bill Gasiamis 1:10:17

    And whatever way the wheelchair rolls, you’re just resisting and pushing and pulling forward and backwards. And that’s it, that is supporting lung function, heart function, you know, the kidneys, the liver, everything in your body, as well as your mental health and your emotional health. So, I mean, it’s a no brainer, it needs to, it needs to be something that we focus on.

    Bill Gasiamis 1:10:47

    And, it’s so useful and beneficial at small levels, that there is no excuse for anybody. Everybody can do it. And there you go, I’ve just hopefully opened some doors for people that they thought was impossible, because they don’t see pushing and pulling yourself on a pole in your wheelchair, they don’t see it as being exercise. But it definitely is.

    Georgie Hennah 1:11:12

    For sure, and just to kind of like on that point. And there has been a common theme, you know, stepping out your comfort zone and things. But one thing I’ve come to realize is that the biggest limitations are the ones that I put on myself. Not my physical limitations, and I think it can be easy to blame, you know, are like, you know, my left side can’t move anymore.

    Georgie Hennah 1:11:40

    For me, it’s been my left side, my foot can’t move and things like that, and spasticity and seizures and all this worrying. I think naturally, you know, we bought kind of strikes, we put ourselves into this box of had a stroke crime, you know, disabled, I’d really don’t like that word. Because I do think that, you know, this being in brackets, because it’s like, everyone’s able to degree and yeah, and I feel like, it’s dropping that that expectation of what it looks like when you’re doing something and being open-minded, being curious, like you said.

    Georgie Hennah 1:12:19

    Because where there is a world that is a way and, you know, if you’re going to be pedantic about and be like, well, I can’t run exactly how I used to then, you know, obviously, that is fact and that is the truth, but equally, that holding on to that is just stopping you from, from enjoying so much. There’s so much out there for people to still enjoy, you know, even if, like, I feel like I’ve gained so much since the AVM rupture.

    Georgie Hennah 1:12:48

    Even though I’ve ironically lost mobility. You know, and I mean, part of the work I do is helping people to thrive again, after stroking and you know, help with their mindset and things like that, because, and I’m aware that everyone has different upbringings and is exposed to different, you know, things and, you know, some people aren’t even aware that there is this alternative way of thinking and yeah, when you’re able to be more curious and open minded and stop comparing yourself to others. It’s really liberating.

    Bill Gasiamis 1:13:26

    I 100% completely agree. I love the wisdom in your young years, in your 25 years. It sounds like you’re kind of old soul anyway, and quite wise, even though you hadn’t gone through the stroke yet. But now, it sounds like you’re somebody that, that I think you’re setting a great example. And people can learn from your recovery, all people of all ages, right.

    Bill Gasiamis 1:13:58

    And I really appreciate that. I really appreciate that there are younger people like you who are doing this type of stuff at your age, because there’s a lot of other younger people having strokes that might not relate to an older bloke like me.

    Bill Gasiamis 1:14:17

    And even though I’ve been through similar things that they’ve been through, they might be going well who is this old bloke from Melbourne that I don’t know, or can relate to, or see themselves relating to so it’s really good, and it’s really important, and I’m wondering, here’s something that I’m gonna throw out there see, weather this little seed germinates, and I wonder when the books gonna be written.

    Georgie Hennah 1:14:41

    Oh my gosh, so many people have said that to me. I definitely. It is on the agenda. But I feel like I feel I’m like collecting the chapters. You know, I think when I’ll know when the time is right, I think yeah, I’ve got a blog, and I’m not as active on it as I used to be, but I do keep record of things that are going on, you know, so who knows some point in the future hopefully.

    Bill Gasiamis 1:15:12

    Georgie, thanks so much for being on the podcast. I really appreciate it.

    Georgie Hennah 1:15:15

    Thank you so much for having me. It’s been a pleasure to be here.

    Bill Gasiamis 1:15:19

    Thanks for joining us on today’s episode. Sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke.

    Bill Gasiamis 1:15:37

    If you are a stroke survivor with a story to share about your own experience, come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor, or care for someone who is a stroke survivor, or be one of those fabulous people that helps stroke survivors overcome deficits and get better.

    Bill Gasiamis 1:15:58

    So basically, you just have to be involved in stroke some way shape or form to get on the show. If you go to recoveryafterstroke.com/contact, you can fill out the form and as soon as I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Now thanks again for being here and listening. I really appreciate you and see you on the next episode.

    Intro 1:16:26

    Importantly, we present many podcasts 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 1:16:44

    All content on this website at any linked blog, podcast or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, 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 1:17:06

    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 1:17:28

    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 medical information changes constantly.

    Intro 1:17:48

    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 Thunderclap Headache and Stroke – Georgie Hennah appeared first on Recovery After Stroke.

    1 hr 19 min
  • Stroke And Atrial Fibrillation – Peter Cass
    Peter Cass lived with Atrial Fibrillation which caused a stroke at age 60. In our interview, we discuss his journey and how his recovery is coming along 5 years on.

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    Highlights:

    01:27 Introduction

    02:20 Stroke And Atrial Fibrillation
    08:07 Prescription Medication Caused The Stroke
    14:49 Peter Cass’s Post-Stroke Deficits
    23:47 Vision Problems After The Stroke
    30:05 Stress-Related AF Instances
    40:55 Post-traumatic Stress Disorder
    48:35 The Emotional Recovery
    56:14 Restoring the Gut Walls Could Help Save Brain Function After Stroke
    1:04:20 Recovery Rate
    1:12:09 Rest Management

    Transcription:

    Peter Cass 0:00

    This neuropsychologist, she said, Has anybody ever talked to you about post-traumatic stress disorder? And I looked at her like are you crazy? I’m not a Vietnam War vet. I wasn’t in Afghanistan, having to deal with IEDs the whole time. She said, when you have a stroke when you have a heart attack when you have something like that, it’s a trauma it’s a significant trauma, and you need to do things in a therapy that also helps you cope with that trauma.

    Intro 0:38

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

    Bill Gasiamis 0:50

    Hello, and welcome to episode 226 of the recovery after stroke podcast to learn more about my guests, including their links to social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

    Bill Gasiamis 1:08

    If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video, like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.

    Introduction – Peter Cass


    Bill Gasiamis 1:27
    My guest today is Peter Cass, who had a stroke that was linked to atrial fibrillation. Five years down the road to recovery, Peter has had to overcome much and is getting help with anxiety as well as emotional recovery from stroke. Peter Cass, welcome to the podcast.

    Peter Cass 1:46

    Thank you very much Bill. Nice to be here in virtual world, so to speak.

    Bill Gasiamis 1:51

    Nice to have you here all the way from Switzerland. What time is it there now?

    Peter Cass 2:00

    It is just after nine o’clock in the morning.

    Bill Gasiamis 2:04

    Okay. And here, it’s 7pm on Thursday. And that’s quite a time difference.

    Peter Cass 2:12

    Certainly is, it’s a lot of fun when we do projects in Australia.

    Bill Gasiamis 2:16

    Tell me a little bit about what happened to you.

    Stroke And Atrial Fibrillation


    Peter Cass 2:20
    What happened to me was, it’s the beginning of 2017, I was diagnosed as having atrial fibrillation. And as you know, if you have that, your chance of having a stroke is increased by fivefold, I think something like that. So I was given some regular medication.

    Peter Cass 2:43

    And in March 2017 on a Monday lunchtime, I just started to feel really bad. And noticed that my atrial fibrillation was bad and my heartbeat was all over the place. So I drove home, excuse myself, and thought that the rest would sort that out.

    Peter Cass 3:08

    The following day, on a Tuesday, I spoke to my GP. And he then spoke to the cardiologist, the local hospital department that was dealing with me. And he said, there’s a possibility that we can give you what’s called a pill in the pocket, which is a medication that will you know, break the cycle with your AF and bring you back to normal.

    Peter Cass 3:37

    So he said, Okay, come in tomorrow, and we’ll sort that medication out for you. So I went in, in the morning, took the pills home with me and took the pills. But I was still kind of you know, working from home, so in the afternoon of the Wednesday I was actually hosting a web conference and suddenly I’m looking at the screen and I can’t see the cursor when my mouse cursor is moving to the right when I was presenting.

    Peter Cass 4:07

    And my first reaction being an IT person was thinking oh, the driver’s messed up or something doesn’t work. So I didn’t really you know, think about it. And then the meeting finished and I really noticed that I couldn’t see so well without of my right eye.

    Peter Cass 4:26

    So I sat down, had a rest and I thought to myself this is interesting because I know these tablets that I was given and taken strong. So I just took it easy really. mate of mine was coming around to watch the Champions League. So I decided that beer wasn’t on the menu for me that night if I was feeling a bit dizzy.

    Peter Cass 4:53

    And when he came around, I got him to read the instruction of the leaflet that comes with the drugs which is printed so small, it’s hard to read, and I really couldn’t read it. Though my eyesight is pretty good. So he read it, and he saw that it said, you could have as a side effect blurred vision, and you could also have slurred speech.

    Peter Cass 5:19

    So I didn’t think too much about it. The next day, I called the doctor and I said, now I’m having these problems. Do you think it could be the side effects of the medication or something else? And he said, that sounds like the side effects of the medication. And he said, then on the following day, if you’re not feeling better, then come to the office, I won’t be there but someone else could look at you.

    Peter Cass 5:46

    And my wife at lunchtime said to me, you know, your speech is slurred sometimes. And I speak two languages. Obviously, mother tongue is English, but I’m also speaking German. And with her, I speak English and her English is very good. And I thought, yeah, this is interesting. I’m really looking forward to going to the doctor the following day, which I did.

    Peter Cass 6:15

    And I was seen straightaway, saw another doctor who did some tests with me, you know, the typical stroke, things like balance and that kind of thing. Right! You’re going to hospital now to emergency I think you’ve had a stroke. And of course, in my mind, I’m thinking stroke, you know, half the body on fire, terrible pain, all these other things, because that’s my kind of layman’s knowledge at that point of what a stroke is like.

    Peter Cass 6:43

    So I’m thinking, how can I? I can’t have had a stroke, that cannot be that I had a stroke. So I went to the hospital. And I had a scan. And then the neurologist showed me the damage on the pictures. And indeed, I had had a stroke, probably on the Wednesday after I took those tablets.

    Bill Gasiamis 7:10

    Wow. So how old were you at the time?

    Peter Cass 7:15

    How old was I? I’m 65 now, so I would have been 60.

    Bill Gasiamis 7:22

    Are you doing in your mind after that amount of days elapsed when you finally found out? Are you kicking yourself? How are you responding to the fact that you waited so long to do something about it? You’re giving yourself a hard time. How does that go?

    Peter Cass 7:41

    I think I was giving the doctors a hard time. The first opportunity, of course, I said to myself, well, I should have insisted on going to the doctor earlier, as soon as I had those symptoms, but, you know, you tend to trust healthcare professionals. And I thought, if he says this is a possible side effect, and then it probably was.

    Prescription Medication Caused The Stroke

    Peter Cass 8:07

    And of course, actually, I met the cardiologist some months later. And he knew when I walked through the door, I was going to ask him, I said, could the medication you gave me has caused the stroke? And his answer was in German, of course, but it’s basically, Mr. Cass, you were very unlucky because on very rare occasions, this drug can actually cause problems and loosen up, let’s say an embolism that you have in your heart. So I would say the likelihood, which is positive and negative, was that the medication caused the stroke, but I would never get that from the hospital or from the cardiologist.

    Bill Gasiamis 9:01

    In hindsight, do you wish that they had said that and you think that would have made a difference in your decision to take the medication? If they’d made you aware of that potential risk?

    Peter Cass 9:15

    It would have been a consideration. I mean, if I believe what I’ve read afterwards about that drug, it is a very, very rare occurrence, you know, less than one in 1000. So everything is a gamble, when it comes to it, especially with medical treatment and with medication as you know.

    Peter Cass 9:34

    I tried to keep myself informed. I’m probably a pain in the rear end for doctors because I have worked for pharmaceutical companies years ago. So I consider myself to have quite a good knowledge level. But yeah, maybe I’d have havening I’d have thought about it. But I guess at that point in time a stroke was a million miles away from my thoughts, you know, it wasn’t really something that I could consider would happen.

    Bill Gasiamis 10:06

    Had you ever known anybody to have had a stroke?

    Peter Cass 10:11

    Actually, no. And of course, the funny thing is, well not funny,but in the last five years, you start to network with people, actually, a very good friend of mine has had a very, very bad stroke. So I thank myself, I’m grateful every day, of course, that I didn’t have anything serious.

    Peter Cass 10:35

    However, on the other hand, what I feel is that, you know, a lot of people who have long lasting physical problems as a result of having a stroke. You know, it’s much more serious. But when you have one of these silent strokes, the problem is no one understands it.

    Peter Cass 10:54

    Because, you know, when I called at work and said, You know, I’ve had a stroke, and it was like, can you walk? You know, and when people came and visited me in hospital, I’d go and walk to the coffee area with them. And I think they found it hard to believe I’ve had a stroke.

    Peter Cass 11:09

    And to be honest, in the beginning, before I understood more about it, I found it very difficult to believe that I’ve had a stroke, because I’m in hospital in the stroke unit, you know, wired-up, monitored and everything. And besides a few problems with my heart and my blood pressure, I didn’t feel you know, bad.

    Peter Cass 11:29

    I felt like a fraud, if that makes any sense, you sort of thinking, well, you know, it has, this really happened. And, of course, the evidence was there that it had happened. And then I started to notice what the problems were at least in short-term.

    Bill Gasiamis 11:44

    Yeah, well, I can completely relate to that part. So my first incident was a bleed in the brain. And it took seven days for me to go to the hospital. And I was walking differently. And my wife noticed that and she told me about it, and I ignored it. And my chiropractor told me and I ignored it. But when I finally went there, and they gave me some medication to decrease the inflammation in the head, I was up and about and walking normally. And you couldn’t tell I was in my football gear.

    Peter Cass 12:20

    When you say football, which kind of football? Because you have so many different types.

    Bill Gasiamis 12:25

    Round the ball. And of course, I wasn’t in boots or anything, but just shorts and a T-shirt and running shoes. And then people would come to visit me and I would be down with them in the cafeteria. And I’d be walking all over the hospital telling them what they’re doing to me and all that.

    Bill Gasiamis 12:48

    And people you could tell they couldn’t compute it, because there was no visible signs. And I was being told constantly stay in your bed, Do not wander around the hospital, by the nurses, the doctors, they kept looking for me, they kept trying to bring me back. But I just didn’t feel like I needed to be there.

    Bill Gasiamis 13:06

    And I didn’t realize how serious it was until six weeks later, when I was supposed to go to the follow up appointment a day before I had another bleed, which was a little more catastrophic, a little more dramatic, where it was at the point where I didn’t know who my wife was, I didn’t know my name.

    Bill Gasiamis 13:25

    So I had a long winded recovery from that portion of the bleed. And the other thing with me was they never called it a stroke, because it was an arteriovenous malformation, which is technically a tumor, which is inside your head, which bled, it’s technically not an ischemic stroke, and it’s not an exact hemorrhagic stroke.

    Bill Gasiamis 13:52

    So for many years, they actually didn’t call it a strike. And I wasn’t traded by the stroke department, if you like or wasn’t in the stroke ward. And, I couldn’t relate to anybody because I didn’t know where I fit in. I had all the neurological symptoms that stroke people had, I had fatigue, I had all these things, the first time I realized that, I could say that I had a stroke for lack of a better label.

    Bill Gasiamis 14:22

    Was when I when I read it on the Stroke Foundation. Australian Stroke Foundation page, that I had a brain hemorrhage and they classify that as a hemorrhagic stroke. So when you’re saying you felt like a fraud. I felt like I was explaining myself to people who weren’t believing me who downplayed the seriousness of it. And I couldn’t convince them otherwise.

    Peter Cass’s Post-Stroke Deficits

    Bill Gasiamis 14:49

    And it was a really challenging thing to bring people on board so they can understand what neurological problems I was facing cognitively, emotionally, mentally, a whole gamut of issues, right? But I couldn’t get people on board. So what were you left with? When you were discharged from hospital? How long did it take to get discharged?

    Peter Cass 15:20

    Well, I was in hospital for six days. Of course, I’ve mentioned the vision problem. But within two or three days, I was still using my iPad, I was using my phone, sending texts and things straight away. But the right half vision on my right side, it was like someone just cut the screen about 20%. And that last 20%, I remember watching football.

    Peter Cass 15:49

    And whenever the ball got played, from the left to the right, I was having to turn my head to follow the ball. You know, it’s normally you sit in front of the TV. And so there was definitely a vision problem. What I began to realize forever soon after, and I didn’t hear about aphasia for probably two years after my stroke, was that I was writing sentences, in text or whatever, missing out words using the wrong words.

    Peter Cass 16:21

    And that became very apparent. And also, I was struggling sometimes to read. I’ll give you an example, I was probably two days in, I was reading the BBC News on my phone. And I came across a word, which I didn’t understand. And that word was M A, R, C, E, L. Marcel. It’s a person’s name, a very common name here in Switzerland, actually.

    Peter Cass 16:48

    And I found myself reading M A, R, C, E, L, what does that mean? M A, R. C, E, L, about the third time, Marcel. And then I realized I had problems with certain words, let’s say where the pattern is, you know, when we read, we don’t really look at every letter. So through, thought, trough words with similar patterns, I was having to think consciously about the context of that word, if I was reading something and which word it was.

    Peter Cass 17:27

    Which is completely stupid when you think about it, but then I realized that, you know, the linguistic center of my brain had been affected, and it still is today. So if I write an email, I will check it more than I used to, I think anybody who doesn’t check what they write is an idiot sorry. So you should check it at least once.

    Bill Gasiamis 17:50

    Thank you.

    Peter Cass 17:52

    But, you know, I found myself checking it three times, when I look back at some of the texts I sent, which I still got WhatsApps on my phone. When I was in hospital, I’m surprised at how few errors there were actually, but missing out a word completely.

    Peter Cass 18:08

    And if I may, I’ll give you a bizarre example. Later, when I was back at work. We had decided to give me less responsibility in the business and to hire a successor because I’m just about now going to retire fully. And we had a meeting with our I’m in it, and we do software projects, we implement software throughout our companies.

    Peter Cass 18:37

    And I had to introduce the guy who was taking over my department. And his name is Maxim. And I introduced him as Sasha. Now, I know two Sashas, they don’t look anything like him. Totally bizarre, where the hell does that come from? And people looked at me like, really weird, you know, are you drunk or what’s going on?

    Peter Cass 19:05

    And then we had a good laugh. And actually very kindly, he adopted Sasha as his nickname. So we know him in the company that people that work closely to him refer to him as Sasha. But it was just bizarre things like that. And that still happens, I will use the wrong word. And have no clue. So I left the hospital with a vision problem and an awareness that I had these linguistic problems.

    Peter Cass 19:39

    All the tests I had, I passed quite well in mathematics, and you know, on screen testing and eye coordination, everything was pretty good. But I left hospital after six days with still a vision problem. And with this linguistic problem, and vision got better After two or three weeks, but the linguistic problem is still there, from time to time, Fred Oh, sorry. It’s Bill.

    Bill Gasiamis 20:11

    Yeah, I understand, I got left with. I struggle with wear, where, and ware? Yeah. And sometimes I can spend way too long on trying to work out when to use which word. And then other times, I won’t spend any time on it. And I’ll completely get it wrong. And I’ve done that a fair few times on Instagram where I ask questions of people. And I’ll use the wrong (where), and then I’ll post it. And then my wife will notice it after I’ve posted it. But 10 people have responded to my question. And then I can’t take it down I’ve got to leave it there.

    Peter Cass 20:48

    Yeah, sure. And I think the other thing is that in today’s world, especially with AutoCorrect, which probably you should switch off because the AutoCorrect, I wrote someone the other day and didn’t notice, in a WhatsApp, I basically wrote a sentence that was pretty much nonsense, or didn’t understand, and I wasn’t careful enough, checking it.

    Peter Cass 21:17

    So then there are some things also long-term, which could possibly be a result of having a stroke, where no one’s really willing to sort of nail it down and say, that’s absolutely because you had a stroke. And that is when I go walking. Or when I went walking originally, and the back of where I used to live was very nice hills and woods, go up there. And I started to be more breathless.

    Peter Cass 21:49

    And then they did an angiogram. And I think the cardiologist in my hospital had to go somewhere else for the angiogram, for whatever reason, the cardiologist in my hospital, thought that, you know, he’s going to find clogged arteries, and that we’re going to put a stent in or something straightaway, actually, it turned out that I was in quite good shape, much to my surprise and amazement for someone who’s overweight.

    Peter Cass 22:15

    At that time, still middle aged. But they didn’t really find anything wrong. And the cardiologist at that hospital, said to me, he’d had a number of stroke patients who had similar experiences, where he believed it was to do with the dilation of the capillary arteries in the lungs, and they needed some help.

    Peter Cass 22:39

    So that you didn’t get breathless, and I’ve had medication since then. And sometimes, for no apparent reason, this kind of, you know, challenging breathing, pops up. But my rehab lady really showed me some deep breathing exercises that helped me get more oxygen, even when I’m walking around, you know.

    Bill Gasiamis 23:05

    So, a result of the stroke, it’s impacted your ability to take a proper breath. Is it a neurological issue?

    Peter Cass 23:16

    I think that no one knows. And I wouldn’t say that I know better than the doctors. If you ask one cardiologist he would say basically, that’s rubbish that that could have impacted that. And asked him the other cardiologists was the guy who suggested it to me. And I found that there’s a lot of research, interestingly, there’s research in Australia about it, to try and measure the correlation between these kinds of breathing difficulties afterwards for people who’ve had strokes.

    Vision Problems After The Stroke And Atrial Fibrillation

    Peter Cass 23:47

    So, again, you know, and I think I mentioned to you once we were chatting, I recently had my prescription changed on my right eye. And I’ve always felt that since the stroke, I didn’t see so well in the right, which was the one that was affected immediately. And actually, the strange thing is when the opticians measured it or the eye doctor measured it didn’t find really anything wrong until recently, when they said yeah, there is a weakness there. And we have to change prescription.

    Bill Gasiamis 24:21

    Yeah, I know that it we can’t blame everything to the stroke and it might not be related. The interesting thing though, is that well, the heart is part of the autonomic nervous system in that it beats kind of independently of us. It doesn’t really need us to be it beats on its own, however, you know, communicates with the rest of the body and then there’s a part in the brain that creates communication between the brain and the heart and that kind of says, you know, okay, we’re beating and do that and if that part of the brain is damaged or is not there anymore.

    Bill Gasiamis 24:59

    Then the heart stops. And that’s, you know how, for some people, you know, brain challenges, whether they are ischemic or hemorrhagic strokes can cause the heart to stop. So, to me, it kind of makes sense that there is a plausibility to your condition that it might be related, but at the same time, we don’t know, maybe it doesn’t matter if we know or don’t know.

    Peter Cass 25:26

    This is exactly what the cardiologist said, you know, all these things be linked together, and you could have an impact. And we just like, I will never know whether the medication really caused the stroke or not, I will probably never know about the other things.

    Bill Gasiamis 25:45

    One of the things about medication I know with a lot of my female guests I’ve had on the show, or who have been taking the pill, the, you know, for a few a few times, you know, for medical reasons, yes, some of the ladies are taking it for, you know, birth control reasons. And, often, and they’ve had a stroke, for example, and then often, they later learned that the birth control medication can potentially put women at greater risk of ischemic stroke. And all of them will go back to their doctors, if they ask the question, you know, the doctor says, look, it’s a risk, you know, it’s a very low risk and all that. But again, they just rule out the possibility that it was that or definitely that, or something else. We’re talking about young women who are having ischemic stroke.

    Peter Cass 26:46

    And let’s be honest, if if you read every leaflet that comes with every drug that you’ve ever taken, you’ll never take anything, and you know that there is going to be a risk of side effects. And it’s not like the nasty drug companies are making things to make you ill or have strokes. It’s just a fact that everybody’s different. And like you said, we’re totally interrelated. All these systems in the body. And, taking medication or a combination of medications can cause problems.

    Bill Gasiamis 27:24

    So what was the hardest part of this stroke journey for you to experience?

    Peter Cass 27:32

    I think, the thing we’ve already talked about the fact that other people don’t understand that there can be strokes that are less dramatic, that was difficult for people to understand. And like you’ve mentioned, you know, you have to explain to people what it is, and you have the feeling that they don’t treat you the same as they probably would, if half of your body was paralyzed.

    Peter Cass 27:59

    So we’ve discussed that, I would say the other thing is, you know, like the anxiety, because, you know, it could happen again, I can remember the first time I went home, I had great difficulty in going to sleep, because I thought I would just would never wake up again. And that anxiety stays with you.

    Peter Cass 28:24

    Tried to address that to a certain extent, by having some therapy and learning to do yoga nidra to on a regular basis to you know, help you relax and whatever. I think fatigue is is one thing, and also probably coping with stress. I gave up some responsibilities was, which was exactly the right thing to do.

    Peter Cass 28:50

    I have still a lot of responsibility. But, you know, I found I couldn’t deal with stress. And it’s interesting that since the stroke, I’ve had three instances with bad instances with atrial fibrillation, where I’ve had to have a cardioversion, which is they put you out, put a defibrillator on special one and give you a shock, kick everything back.

    Peter Cass 29:16

    And the first time I had that done, of course, I was terrified when I had experienced it and had it repeated, you know, I was comfortable with it. But you know, those instances could happen. And you know, when those instances do happen, that then possibly it would, you know, create the right circumstances or conditions to have another stroke.

    Peter Cass 29:42

    And the interesting thing is those three instances, they have always been kind of stress-related. One was the day that we moved apartment. Another one was on a very rough flight from the UK back to Zurich. Really bad turbulence and I was sick, had some sort of fluid type thing.

    Stress Related AF Instances

    Peter Cass 30:05

    And so mostly the the AF instances were related to stress. So I haven’t had one now in three years, but they adjusted my medication. But again, you know, these things are all linked. So you’re thinking, if you have one of these instances, you’re thinking, you know, now I’m prime territory for a stroke again.

    Peter Cass 30:27

    So of course, that’s very worrying. But I’d summarize in fatigue, coping with stress. And these long term linguistic limitations or instances, I think, it’d be very helpful to talk to other people in support groups and read other people’s experiences.

    Peter Cass 30:52

    Because that helps you also understand, you know, you’re not alone. And there’s lots 1000s Millions of people around the world who have same experiences. But yeah, I think I’ve also changed certain things in the way I behave. Probably kind of quite a while I think I’m probably quite a direct person, and also a chatty person tend to talk too much. But I, I would say I don’t suffer fools gladly.

    Peter Cass 31:22

    If I see a situation in a conversation in a business or in a meeting, and I see that someone is stressing me out, because we’re discussing something for the 50th time, then I tend to be less tolerant, and just say, Come on, look, we’ve discussed this enough, let’s make a decision. Let’s move forward. And I think my threshold, if I’m allowed to say, my bullshit threshold has changed, it’s a lot lower than it used to be.

    Intro 31:50

    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 32:15

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

    Intro 32:34

    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.

    Peter Cass 32:54

    You could say that I’m less patient, perhaps. But I just realized every minute that I live is valuable. And going round and round in circles in a business context is not valuable. Let’s get on with it. And let’s make decisions. And yeah, so that’s affected me a little bit. I think in the way I conduct meetings, because I have to conduct a lot of meetings.

    Bill Gasiamis 33:21

    What kind of level is your role?

    Peter Cass 33:28

    Well, when I gave up some responsibilities, the responsibility I gave up was people management. So I’m a program manager, I have several teams working for me. But they’re not people that work for me, in a line relationship, people from different teams.

    Peter Cass 33:47

    So I’m coordinating those projects, and guiding people see something going off track, and also have net responsibility. We have steering committees with members of our board. So yeah, but I don’t know whether that’s also getting older and closer to retirement that you tend to say things that you perhaps wouldn’t say in front of board members 10 years or 15 years ago when you wanted to keep your job with the company.

    Bill Gasiamis 34:21

    Get some feedback from the doctors see what they think maybe it’s linked maybe it’s not linked to stroke.

    Peter Cass 34:25

    Yeah exactly. But I think it’s just you want to get on with things and you want to keep things straightforward, and focus. And, of course, you have to do that because you’ve had a stroke. I don’t know whether you’ve found that you have to focus more. When you do something. You know, your attention span can be a problem. Your mind can come wander so you want to try and because of that you try and keep everybody else focused and I don’t think that’s necessarily a bad thing.

    Bill Gasiamis 34:59

    It’s definitely all about resources and energy and the lack thereof. And the there’s not an infinite amount of it. And I get short towards the end of the day, because towards the end of the day, I’m running low on energy. And it’s very different to what it was before my bleeds.

    Bill Gasiamis 35:20

    Until then I could go on and on and on. And after that I couldn’t, I had a Alea wall that I would hit. And when I hit it, it was just lights out. So if I needed to get stuff done, and you’re fluffing around, in and getting in my way to get that stuff done, before I hit the wall, then I didn’t want you to be in my way, I did want to hurry you along, I wanted you out of my way.

    Bill Gasiamis 35:46

    And I wanted to get to my destination so that when I did hit the wall, I could sit down, rest, recuperate, and get ready for the next day. So a lot of other stroke survivors report that they don’t suffer fools as much as they would have previously.

    Bill Gasiamis 36:06

    And they also report that whole Well, perhaps that lack of patience, but I think it’s more fine tuned than being impatient. I think it’s them being totally aware of the fact that they’re running out of resources, and you’re, and that interaction is chewing up valuable resource, and I need to keep moving.

    Bill Gasiamis 36:31

    And I think the more we get better at talking to other people about our stroke and telling them what happened to us and how we’re different compared to them, or how it’s changed. I think we could get away with decreasing the amount of time it takes to get to the next part of the conversation. And people, most people will come on board, and they’ll appreciate that. But if you’re also coming across differently, and people are experiencing differently that might set other people off to think oh Peter’s being a bit of an ass.

    Peter Cass 37:06

    Yes, absolutely.

    Bill Gasiamis 37:07

    Did you get any of that pushback? Did people misinterpret your lack of well, time with them as you having changed as a result of your stroke?

    Peter Cass 37:24

    I think that, you know, incidents that I can remember very clearly was that of course, I’m talking in two languages. So if I’m talking in German, maybe I have more of a struggle to find a word. But I have people finishing sentences for me. And that just really annoyed me and pissed me off to be honest.

    Peter Cass 37:47

    And I remember saying once to quite senior people, hey, please just give me a few more seconds to think and process. Don’t finish off my sentences. But I know that the bad habit I had before the stroke was sometimes finishing off other people’s sentences, not people who have had strokes.

    Peter Cass 38:08

    So yeah, I think fundamentally, you’re not changed. And I have to say, this may sound weird, but there are some benefits. Because I found when I had the stroke and was going through recovery, I learned from the professionals that I was working with, but also from studying and reading much more about the way that the mind works.

    Peter Cass 38:36

    And that was a curious thing. But we never really we take it for granted. And suddenly you start to think more about mind, and emotions and that kind of thing, and how that’s all connected. I don’t know whether other people experience it.

    Peter Cass 38:55

    But right after the stroke, I found that my dreams, I was very often dreaming about my late childhood formative years. You know, they talk about when you die your life flashes past before you. And it was almost like when you have some kind of trauma, that you have a similar thing and you dream about when you were younger.

    Peter Cass 39:17

    And I think one thing is very important was when I think during the pandemic, I said to my doctor, I said, look, I’ve had no assessment. I’ve had no follow up. I had nine months of going to a rehab place. We’re lucky to have a very good one close to us. People come from all over the world. 7:30 on a Monday morning, I went there on my way to work, spent an hour with my therapist.

    Peter Cass 39:45

    She was excellent. And suddenly at the end of the year, it’s like okay, now with health insurances. you’ve recovered. I don’t you don’t need that anymore. And then after a couple of years, I was asking my doctor hey, isn’t someone gonna do some kind of assessment to see what’s going on.

    Peter Cass 40:06

    And he sent me to a psychiatrist who the first meeting said, I can’t believe they haven’t done an assessment on you. And he sent me to a neurophysiologist. And I spent the day with her doing all these kinds of tests. And what was encouraging, because I had a kind of benchmark, you know, she said a lot of things for your age, you’re better than average.

    Peter Cass 40:28

    There’s a lot that’s in the zone for your age. And there are one or two things like particularly hand-eye coordination, which I’ve never been good at which scores are a bit low. But that gave me kind of a benchmarking. Because I think it’s very difficult for you yourself to judge, you know, where you are in the journey. You need something to hold up, you know, like a map and say, Okay, I’m there, and they’re in there.

    Post-traumatic Stress Disorder

    Peter Cass 40:55

    And that was really useful. But this neuropsychologist, she said, has anybody ever talked to you about post traumatic stress disorder? And I looked at her like, Are you crazy, you know, I’m not a Vietnam war vet, I wasn’t in Afghanistan, having to deal with IEDs the whole time. And she said, when you have a stroke, when you have a heart attack, when you have something like that, it’s a trauma, it’s a significant trauma.

    Peter Cass 41:26

    And you need to do things in the therapy, that also helps you cope with that trauma, which is actually how I ended up doing yoga nidra, she sent me to someone to do wellness based stress reduction. And she said, people who have strokes, people who have heart attacks, people who have terrible car accidents, there are a lot more people who are traumatized than anybody realizes. And so that was actually helpful to understand that. And that certain of these behavioral things were very typical.

    Bill Gasiamis 42:07

    My wife would say, after the second bleed, I couldn’t finish sentences, I was vague, a lot of the time I’d start a sentence and then not even know what I was talking about. I couldn’t type an email, I couldn’t do calculations. You know, there’s so many things that I couldn’t do after the second bleed. And I had I had a counseling session with my den psychologist.

    Bill Gasiamis 42:35

    And she said, has anyone suggested a neuropsychologist? And I said, No, I don’t know what that is. And it was because of her that I then went and asked for an appointment for Neuro Psych. And that’s the only reason why I got one and followed up. And like you, it seemed like, it wasn’t even worth mentioning to me, it wasn’t a priority for my doctors to allocate me one or to make an appointment for one.

    Bill Gasiamis 43:05

    But they also didn’t feel the need to tell me. And I’m not sure why that is because I clearly struggled with a lot of things after that second bleed and for many, many months, nonetheless, I went to the neuro Psych. And it’s exactly the relief that I got, I got to learn where I was at. And then I’ve got to be able to reflect. And my counselor, my psychologist would say to me, Hey, also, do you remember, when you came in last time, you couldn’t complete a sentence or you couldn’t do this, or you didn’t do that.

    Bill Gasiamis 43:38

    And now you’re doing that really well. And that might be three or four sessions down. So she was doing a lot of that reminding me of how far I’d come, as well as my wife and all the other people that were around me. But yeah, how do you know, I mean, and you also got a brain that’s dealing with stroke recovery. How do you know to be your own self advocate, but you do have to be your own advocate.

    Peter Cass 44:06

    You can’t just sit back and say, I’m surrounded by these people, and they’re gonna take me along the journey. You have to get the map and get the compass and point your feet in the right direction. I think one of the things that I’ve learned is that it was important for me to take over control of the recovery process, and not rely on other people. Now you could say, well, that’s a weakness with the healthcare or something.

    Peter Cass 44:36

    Healthcare is excellent in Switzerland. But you, it’s you, it’s your brain, it’s your mind, and you need to take control and talk to the right people and do things, but you also have to listen, you know, to your partner and close friends and people like that.

    Peter Cass 44:53

    Don’t push yourself. I don’t know. You know, a lot of people in groups. I was saying to someone the other day you I’ve never been a sporting person, though. I love sport, football. I used to coach it. I see people who have had a stroke. And suddenly they’re doing half marathons and marathons and swimming across the English Channel, and they’re doing all these kinds of stuff.

    Peter Cass 45:20

    And I understand that because doing these physical things is a confirmation back to them that they’re recovering and going in the right direction. But sometimes you think you just need to rest a little bit and relax and not do so much. And that’s sometimes the message I’ve had from other people. You know, my wife says that, you don’t have to do that now, you know, you’re not feeling that great, because I had a bad virus over the summer wasn’t COVID.

    Peter Cass 45:50

    And after that an infection, give yourself a break, give yourself time. You know, probably with the fatigue, like you mentioned later in the day, you can’t do so much. So schedule your key activities for the times when you you know you’re at peak performance. But give yourself a break as well. And I think we want to reassure ourselves that we’ve got back to normal or as close as we can, and probably we push ourselves too far.

    Bill Gasiamis 46:19

    Yeah, I couldn’t agree with you more. Look, I’ve interviewed people that become ultra-marathon runners, Episode 130, I interviewed Andy Robinson. And he got into ultra-marathon running so more than 40 kilometers in one day, and just absolutely thrives on it and loves it. And it’s where he finds his meditation time, is where he, you know, uses all the skills to overcome the pain and suffering that he’s feeling in his muscles.

    Bill Gasiamis 46:53

    It’s helping him mentally, physically, emotionally, and all power to him. But I tell you what, I could not think of anything worse now. Maybe Andy hasn’t got some of the deficits that I’ve been left with. So you know, running is definitely difficult for me, and I don’t feel comfortable running. So all power to him. But I felt like also telling Andy like, kind of just rest up a little more.

    Bill Gasiamis 47:21

    Maybe it’s helping him avoid things like post-traumatic stress. So maybe that’s why Yeah, some people are doing it. Because I know movement. And exercise really does help the brain overcome. Well help with the managing of post-traumatic stress disorder.

    Bill Gasiamis 47:36

    You know, I interviewed Dr. John King, for episode 162. And, you know, he’s somebody who deals with post-traumatic stress disorder, not because of a stroke, because of a different life experience. But he talks about the whole process of going through an episode and all the things that help him.

    Bill Gasiamis 47:59

    And he didn’t know how to deal with it, he didn’t know how to get help. He didn’t know what was happening. It ruined his life, it ruined his marriage, it ruined all those things. And slowly, he’s had to take control where he could and claw back to a life that was stable, to a job to all the things that normal, quote unquote, normal in somebody’s life. But again, he didn’t come from stroke to post-traumatic stress disorder.

    The Emotional Recovery


    Bill Gasiamis 48:35
    But he had to be his own advocate. And he knew what he needed. He also had to have the courage to go and get the help. Because if they’re an emotional recovery after stroke, a lot of people won’t go and get help. I know men are less likely to get help than women.

    Bill Gasiamis 48:50

    And that’s the thing that’s going to help your recovery. I spoke about it in the last episode where I did a solo episode it’s part two of my, my solo episodes, where specifically I spoke about the possibility that if you missing out on the emotional recovery from stroke, then you’re missing out, in my opinion on 1/3 of the recovery that’s required.

    Bill Gasiamis 49:18

    Underneath emotions, you can put spiritual, you can put all sorts of different things under that bracket. But if you’re doing the physical recovery, and you’re doing the psychological recovery, or the mental recovery, and you’re changing the way you’re thinking about your life, and you’re thinking about, you know, the negative sides, and you’re thinking about the future.

    Bill Gasiamis 49:38

    If you’re able to bring that around, but then you’re not doing the emotional recovery, which is heart centered work, and you’re going to be kind of behind and if you’ve never done that kind of work, because you never thought you needed to do it. Well, here’s the time where you really, really need to do it besides struggling it’s gonna take To do more than anything, and it’s going to bring all those demons that we thought we had swept under the rug, it’s going to bring everything into the surface.

    Peter Cass 50:09

    Yeah, because I think the physical recovery is very measurable, you know, you have metrics, it’s very visible. And I think that emotional, psychological recovery is something that’s more elusive, it’s more difficult to pin down. And I think you’re absolutely right, you need to talk to people. You know, I can think of situations where I’ve had just lost it, you know, emotionally and burst out crying and whatever.

    Peter Cass 50:38

    And, my wife would say, What’s the matter? And I would just say something like, I just can’t cope at the moment thinking about that. Because, you know, you have these phases where you are weaker emotionally and psychologically. And yeah okay, I haven’t had too many physical deficits that I’ve really had to concentrate on. So I’m very fortunate in that sense.

    Peter Cass 51:08

    So I’ve had have concentrated on the other things. But yeah, I think it’s the recovery spans a whole lot of areas in your life, doesn’t it? And, you know, there’s lots of different aspects to it. And everybody’s different. That’s the other thing. I’m sure there are people who, who just said, Okay, get on with it, I’m more or less okay and that’s it.

    Peter Cass 51:36

    And there are other people like me who think about things a lot, you know, and think about, where am I? And is that linked to the stroke or not. And, of course, we don’t want to make our experience a crutch, an excuse for things. But I think it’s very important that the wider community has a better understanding of brain injuries. And that’s why, you know, I’m happy to come and talk to you.

    Bill Gasiamis 52:12

    Yeah, I appreciate that. And hopefully, the people that know you will listen to this and get a better insight as well. And that will be really fantastic. I wanted to ask you about your friend who, you know, had a serious stroke. How are you interacting with that person now? That you’ve been on that side of stroke. And he’s been there, where are you guys at?

    Peter Cass 52:40

    I’m not interacting with him really at all. Because his brother is interacting with his friends and social media and emails and stuff like that. Because as a result of his stroke, and I don’t know the exact medical condition, it’s kind of his 48 is brought on like an early dementia. So he’s not only had terrible physical problems, and he was like the guy who was running half marathons while he was living in New York.

    Peter Cass 53:10

    I think he even ran the New York Marathon. And he’s really been hit him like a railroad train physically, mentally, or whatever. So I react with his brother. He’s a Filipino, he happened to be home visiting when he had a stroke. So at least he’s with his family, rather than in New York. So I can’t interact with him directly. And that’s, of course, frustrating.

    Peter Cass 53:37

    But it’s nice thing was he went on Facebook a few weeks ago and wished his mom happy birthday. And that was the first post probably in nine months or something. So I hope that I’ve helped, you know, his brother asked me a lot of questions. So I’ve tried to support his brother with some some interaction there, because he’s really in a tough space, mentally and physically, and making progress but slow.

    Peter Cass 54:06

    And I think he’s brother appreciated, having someone to talk to or just ask, you know, how did this work for you? How long did it take? And then, of course, I had to say, look, it’s very different. And with your brother, and it’s really a lot more serious in many ways. And you have to just stick with it and encourage him and be positive.

    Peter Cass 54:33

    And I think that hasn’t been easy been months since it happened. But I hope that maybe in the future he’s able to communicate more, I would love to be able to support him in and have a call with him and just really help him more. But at the moment, that’s just not possible.

    Bill Gasiamis 54:50

    Sounds like he’s still in the very acute stage.

    Peter Cass 54:53

    Yeah, absolutely.

    Bill Gasiamis 54:55

    He might be able to come around a little later. The fact that I’ve had a stroke, and I can answer questions for family members of other people who have had a stroke, is really an amazing thing that’s come out of stroke for me, to be able to iterate to them, something that they cannot possibly understand in any way, unless they have a stroke, which we would prefer they never ever did is something that’s amazing for me.

    Bill Gasiamis 54:57

    And I really get a lot out of the interactions that I have with people who are desperate, who need some light at the end of the tunnel. And that’s what the podcast is about, it’s about shedding some light and giving people the before the middle, and then the after, and then the mutch after if that’s possible.

    Bill Gasiamis 55:47

    So that, you know, there’s, we can, we can offer hope. And then as a result of that, I keep receiving emails from amazing friends who say, Oh, I read this article, and it’s related to stroke recovery, you know, check it out, tell me what you think. And I just received one yesterday, and one of the ones I received that it’s from an organization called technology networks.

    Restoring the Gut Walls Could Help Save Brain Function After Stroke


    Bill Gasiamis 56:14
    And they’ve got a subheading of neuroscience news and research. And it’s an online publication, and the article is restoring the gut wall could help save brain function after stroke. And I get encouraged, because now I hear about things and read things that are related to stroke, recovery and, and improving recovery after stroke via the gut, which is a part of stroke recovery that I’ve known about for quite some time, but there wasn’t a lot of research on.

    Bill Gasiamis 56:50

    So now I’ve got this group of people who know me, as soon as they come across something that’s stroke related, they share it with me immediately. And I get to increase my database of knowledge and get excited about the possibilities of this. So many people looking at stroke recovery in all these different and amazing ways. And these guys are a team of researchers at Texas a&m University School of Medicine.

    Bill Gasiamis 57:22

    And they’re pioneering research into the connection between stroke induced gut permeability or leakiness, and cognitive impairment. So what they’re finding is potentially that people who have a stroke also get impacted at the gut level. And many stroke survivors will report having constipation, or having some kind of an impacted bowel after stroke, and not realizing that the two are linked.

    Bill Gasiamis 57:51

    And then it also brings on gut permeability or leaky anus, which is exacerbated by gluten and casein which is found in milk and all sorts of other things. And now, we actually got the opportunity to support those people. Because a we have this information about a lived experience from stroke, of stroke.

    Bill Gasiamis 58:18

    And then we also have, I also have this beautiful network of people continuing to update me and inform me of things that I can share with other stroke survivors. So I’m going to make a link so that people can find this article, if they go to recovery after stroke.com/episodes. Find this episode. And then from there, they’ll be able to see the link and read the article. So I get that that’s the good part of stroke. And for me, stroke recovery.

    Peter Cass 58:51

    You reminded me of something that maybe I can share. You know, where you you have a stroke, you go into hospital, you cause you want to drink water until they know that you can swallow probably you don’t get anything? Well, during the pandemic, well, I’ve had a lot of throat problems. And during the pandemic, I went to see a specialist and he said, you know, the back of your throat where you have your vocal cords, the vocal cords are supposed to kind of fully close and they didn’t.

    Peter Cass 59:29

    And although at the time all the checks were done. Because that can be something that’s impacted by a stroke. And he said, well, you know, you had a stroke that could be as a result of that. So who would have ever thought that having persistent and chronic sore throats, which are related to the vocal cords could have been also a result of the stroke.

    Peter Cass 59:57

    So I went to like a therapist who deals with all this, you know, talking and singing speech therapists exactly, and went to her during the pandemic, which was very difficult because we’re doing all the exercises with a big screen. And then I found, for example, I can talk better, I played a guitar and sing for fun. And I found that also doing these exercises that my voice was stronger.

    Peter Cass 1:00:31

    So even two or three years down the line, maybe you trip up over something, and it could be related. On the other hand, you don’t want to say every time you sick every time something’s wrong, the stroke is to blame. But I think educating people like you just did you know, these problems with the gut and whatever. We don’t want to make them more hypochondriacs, but we want to make them aware that probably having a brain injury has a lot more peripheral damage than perhaps we’ve realized.

    Bill Gasiamis 1:01:04

    Yeah, absolutely. I mean, my brain was messed up by the blood clots that were in my head for nearly three years before brain surgery. And then it was fiddled with because of brain surgery, you know, that had to move, go into my head for about four centimeters deep, so almost to the cerebellum.

    Bill Gasiamis 1:01:25

    And that’ll go kind of behind my ear, and in there, on actually above my ear, and in and down and in. And they would have had to wiggle stuff and push stuff out of the way. I mean, it’s been physically it’s been handled and poked and prodded it makes sense that something that happens under conditions of surgery, that’s not at the spot of the stroke could impact, you know, the way that you experience your body afterwards.

    Bill Gasiamis 1:01:57

    I’ve had an eye condition, which I cannot describe, and an ophthalmologist can’t see it. But I’ve had this weird kind of flutter. In my eye that feels a bit strange. Pretty much since the brain surgery, and my entire left side is numb and I experienced it differently to my right side, it’s numb, it has pins and needles, it’s colder, it has more tension. So it’s kind of it has a little bit of spasticity, although you can’t see it anywhere.

    Bill Gasiamis 1:02:32

    And when my eye flutters, I just kind of put it off, I didn’t know what it was. And I couldn’t get anyone to explain it to me. And then one day only, only about five or six months ago, it occurred to me that it’s on the left side of my body where everything feels different. And if my eye feels different, that could explain it.

    Bill Gasiamis 1:02:54

    And there isn’t anything wrong with my vision or my eyeball, but it just makes this weird thing that I feel from time to time, especially at night. So yeah, it takes a while for things to sink in as well, sometimes that it could be related to the stroke. So I’m just I’m nearly 10 years out. I mean, I’m discovering these things all the time tomorrow. In Australia, it’s going to be Friday, it’s going to be the 25th of November.

    Bill Gasiamis 1:03:27

    And that is the day the anniversary of my brain surgery in 2014. So it’s been eight years, and I’m still discovering things that I’m going through. And on that note, not only am I discovering things that I’m going through that are related to the show, I’m also noticing improvements in my abilities, capabilities, my fatigue levels are decreasing, still, my energy levels are increasing still. So I want to share that as well, that eight years down after stroke surgery, more than 10 years since the first bleed, I’m noticing minor incremental changes for the positive you know.

    Recovery Rate After Stroke And Atrial Fibrillation


    Peter Cass 1:04:20
    That’s fantastic. And I can remember at hospital the neurologist, told me one of the very frustrating things about having a stroke can be that you’re immediate recovery like my vision, I couldn’t drive straight away three weeks later, I did a test and I was able to drive.

    Peter Cass 1:04:38

    So right that weekend after you know when I was in the stroke unit, things began to improve. I started watching TV playing games and he said one of the frustrating things can be the rate of recovery will go from superfast. To very very slow. And that that can be frustrating.

    Peter Cass 1:05:00

    And you shouldn’t think as someone who’s had a stroke or brain injury, that it’s going to be like, you know the brain is rewiring itself like crazy in the first few days. And it’s not going to be like that. And I think it’s also important, like you just said, dwell on the positive as well and sort of say, you know, what is good? What can you do now that you couldn’t do maybe six months, two years ago?

    Peter Cass 1:05:28

    Whatever. Because of my age, you know, I’ve got the aging process going on. And that’s also a challenge, which you think, Well, you know, how much of this is just getting older, or if something pops up, you know, how much of it is to do with, with with getting older, and I think that’s, that’s also a challenge. And, yeah, of course, staying positive is, is very important. It’s not always that easy.

    Peter Cass 1:05:59

    I’m not a person who is really I remember years ago, when I was a salesperson in the UK, we all had to stand on the desk and say, we are the best sales person in the world. You know, it’s one of these rah rah rah all kinds of seminar events, and I just got down off the desk, and then the guy, the facilitator said, how you’re feeling.

    Peter Cass 1:06:21

    And I said, well, we can’t all be the best salesman in the world, you know, that’s mathematically not possible, unless we’re all equally the same. So, you do have to have a dose of reality, and be realistic. But having that positive mindset, it is also a battle to maintain that you’re going to have your good days, you’re going to have your bad days. And I think that that’s where we can gain support from the community. And people who’ve had similar experiences.

    Bill Gasiamis 1:06:53

    Yeah, to help bring you out of one of those difficult days, like positive mindset is not a permanent thing. Hopefully, a positive mindset is something that you do more often than not, but really recognize that it’s okay to not have a positive mindset as well, because you’re gonna go through the gamut of emotions and mindset feelings, and you got to go through it all, you got to have the ups and you’ve got to have the downs. And you got to find the balance somewhere in your own experience, because having a positive mindset all the time is not viable. It’s absolutely not doable.

    Peter Cass 1:07:34

    Causes you’re allowed to have a bad day as well. Sometimes you have a bad day, don’t do anything. You know, read a book, play guitar, listen to music, whatever it is, watch some crap movie. You know, give yourself a break. And you cannot maintain that level of positiveness. If it’s such a word, positivity. But you know, the whole time and if you try and persuade other people that you’re up there the whole time, come on, get real.

    Bill Gasiamis 1:08:17

    And that’s gonna set a false expectation. I know, there’s a lot of people that went back to work too soon that I’ve interviewed who pretended that everything was okay. And there was nothing wrong. And they really struggled to keep up appearances and pretend that everything was okay. And then only fall into a heap leader, you know, down the track.

    Peter Cass 1:08:38

    Yeah, I mean, I was back at work, from home 50% within two weeks, and then I guess, probably about after six weeks. it was a Monday morning, and I had my therapy. And then I agreed to meet my boss, we had a nice relaxing lunch somewhere in the shopping center.

    Peter Cass 1:08:59

    And then I went back in the office. And the difference I felt of being back in the office to working from home. I stayed there about two hours, and I went home. I could, and then I realized it was far too early to go back in the office. What’s nice about the home office, which we’ve all experienced during the pandemic, is that you can control things better.

    Peter Cass 1:08:59

    You know, at that stage, I was very vulnerable. Someone comes into your office, you have five minutes, Peter, and they’re there an hour and a half later, then you wanted to get on with something else. You were struggling to stay focused on a particular thing. What’s nice about the home office, as you can see this person is trying to call you on teams or whatever.

    Peter Cass 1:09:46

    And you can just ignore it and finish what you’re doing stay focused and then call that person back. Because I think that when you’ve had a brain injury, what’s very important is being organized certain patterns of doing things, they’re really helpful to you, at least I find that they’re very helpful to you. And you know, when you’re home office environment, you have much more control over that.

    Peter Cass 1:10:18

    Whereas, you know, you’re back in the office, and then, of course, especially because you have this invisible brain injury, then people Oh, I thought you were going to be sort of limping along or something like that. And then because people see that you appear to be normal, they interact with you normally, but you’re not ready for it, actually. And that’s, I think that’s absolutely important. You know, make these small steps going back into your work environment, don’t do it all at once.

    Bill Gasiamis 1:11:00

    Through just sheer ignorance, you know, I had those experiences oh you look fine. And it used to annoy me at the beginning listening to somebody say, You look fine. Well, I actually get know annoyed at that person for being ignorant about stroke and what stroke feels like, well, it’s like, come on, that I had to be okay with the fact that they were ignorant.

    Bill Gasiamis 1:11:22

    That’s how they were meant to be, they couldn’t possibly know what it’s like to have had a stroke. But I do love that opportunity that you had to do part of your transition back to work from home, in an environment that you could control, when you stopped for a quick rest, or when you were overwhelmed, or you can control the lighting the noise, you didn’t have to travel and therefore get fatigued in the just in the task of traveling to work and then having to try and find a way home. You know, that’s a really lovely transition back.

    Rest Management – Peter Cass

    Peter Cass 1:12:09

    Yeah, yeah, you know, and we’re fortunate in our company, we have a quiet room, which has, you know, where you can lie down with your head slightly raised. And when I did go back in, I found that was very good. After lunch, to just be able to go there for 30 minutes, lie down, say meditate, you know, but just be quiet, not go to sleep, necessarily, but relax.

    Peter Cass 1:12:36

    And I found that really invigorated me to cope with the rest of the day. So I found I’ve kept that habit of having short, relaxing, breaks, or especially after lunch. And I even noticed that if I don’t have that after lunch, power, nap, meditation, break, whatever you want to call it. And whenever you want to do that I struggle then more as the day goes by.

    Peter Cass 1:13:05

    So I think it’s really good to do that. And I tell you, what’s, what’s great. doing that. And having that quiet time is usually where I get the best ideas and creative ideas or solving solving a problem. Suddenly, it will come to me Oh, yeah, we could do that.

    Peter Cass 1:13:25

    And, you know, I think we all rehearse things in our minds. We have a playbook in our minds, if something’s coming up a meeting or something like that. And those periods of quiet, especially, I think, if you’ve had a brain injury, are really valuable.

    Peter Cass 1:13:43

    They’re like recharging, but also, you know, you get a dose of creativity. I mean, I get my best ideas. When I wake up to go to the toilet, at three o’clock in the morning. I’ve always kind of had that. It’s weird, isn’t it? Because when you’re able to relax and you know, it’s usually then the best.

    Peter Cass 1:14:03

    I remember years ago, we’re reading about the Top UK businessman and he, someone said to him, in an interview said that you’re always on the golf course. He says whenever we say You know, you’re always on the golf course. He says, I have my best ideas on the golf course. If the people I’m having problems with play golf, I don’t play golf, I’ve given up trying to learn.

    Peter Cass 1:14:24

    He says if the people I’m having problems with play golf, we go out on the golf course and we solve those problems. So just changing the environment. And I assure you, you’re gonna say the same thing, just going for a walk in the forest, by the lake, on the beach or whatever, those things are so important.

    Peter Cass 1:14:46

    Or go for a walk around the factory at lunchtime outside, you know, those things are so important and anyway, but they become much more important when you’ve got a brain injury and I think by most of us have had that experience, you know, we value more, going for a walk, going for a walk, you know, looking at the woods, looking at the lake, whatever very important I think.

    Bill Gasiamis 1:15:12

    The benefits of exercise on the healing brain are just, I mean, I’ve written a whole chapter about it in my book. It’s just never ending when you could write forever about the benefits to the brain from exercise, and we’re talking about mild exercise, even if it’s not standing up, even from a wheelchair, you know, anything like that, really suppose the brain to recover.

    Bill Gasiamis 1:15:38

    With regards to what what I love is the applying kind of in my mind, I see the stagnation of being stuck in a problem. Usually, when there’s a problem. If you think about the physiology of most people, when they’re in the problem, they’re stuck, they’re scratching their head, they’re not moving, nothing is really turning over.

    Bill Gasiamis 1:16:01

    And then when you get them moving, and you get them actively, kind of getting out of their head, because now they have to do walking and paying attention to, you know, the path or the rocks or whatever, wherever they might be, then you’re getting out of the way of the brains getting out of the way of itself, and then allowing for things to start moving again.

    Bill Gasiamis 1:16:25

    And for those ideas to emerge or pop up wherever they are living, and to come into your awareness so that you can utilize them, I find that in the middle of the night, I get some ideas, etc. And you know how some people will talk about them, they’ll say they’ve got a piece of paper next to their bed, and they’ll write it down. I’ve never done that yet. So in the morning, I forget about them.

    Bill Gasiamis 1:16:53

    And, they’re gone. And sometimes they reemerge, they pop up. But usually I’m not cognitively awake enough to go, Okay, actually, what I need to do is go down and write it down. And sometimes, if I have gone and written it down, I’m getting, I get too excited about what I just realized. And then I can’t go back to sleep.

    Peter Cass 1:17:16

    Yeah, I’m a musician. And I write songs and play the guitar a lot. And after the stroke, probably only a week or so afterwards, I dreamt that I was playing with a band that I played when I was a teenager, or early 20s, probably more accurately. And I actually dreamt some words to a song. And I actually drempt a guitar riff.

    Peter Cass 1:17:43

    And I couldn’t be bothered to get up in the night and write that down. So I got up, it was still very present in my mind. But I was hungry. So I had my breakfast. And I of course forgot it. But what was interesting is, fortunately, it all came back to me about 10 minutes later, because I remembered enough fragments of it to do it, and then it came flooding back.

    Peter Cass 1:18:08

    And that developed into a song. You know, I mentioned earlier about dreaming a lot about my youth immediately after the stroke. So yeah, I think it’s creativity is very important. And whether it’s physical exercise, playing golf, playing a musical instrument, whatever it might be, those things are, of course, very, very important for the brain and also for the physical side.

    Peter Cass 1:18:37

    But you know, my first reaction to being told that I had a stroke was can I play the guitar or not a year before I injured my arm. And that was exactly the same reaction then. But you know, I was really concerned and I was thinking, okay, I can move I can, everything’s fine with my hands and whatever. But I was wondering, when I really start to try and play again, is something going to be limited or something I was very fortunate not to be but I think getting away from the normal environment is good.

    Bill Gasiamis 1:19:11

    I did an interview with Vinnie Valentino, very accomplished guitarist in the United States on episode 168. That’s a cool one. And he had an ischemic stroke. And then he struggled to get back into playing the guitar. He’s back there now. But he mentioned that he is not at his best and it doesn’t feel like he’s at his best like it was previously. But he’s managed to rediscover, you know, playing the guitar after the stroke and it was one of the things you’re worried about.

    Bill Gasiamis 1:19:49

    I also have a friend of mine who’s had a stroke who I met many years ago at the beginning of my journey, who actually was a guitarist and lost the ability to play guitar Because of the spasticity on, I think his left side or his right side, and then and then it took up playing the keyboard one handed. So you couldn’t really stop him from being a musician, he just evolved and adapted.

    Bill Gasiamis 1:20:19

    So they can still play in a band and they can still perform and write music and do all the things that he love to do he’s just doing it in a different way. Peter, thanks so much for coming onto the podcast. Mostly, thank you for reminding me that I had forgotten to get you on the podcast and to allocate time in my diary. And in my calendar. I say that because there’ll be people who reached out and want to be on the podcast, probably listening, who I forgotten to get back to or in amongst all the messages that I received, I missed out on getting back to somewhere.

    Bill Gasiamis 1:21:01

    So if you’re one of those people, and you’re listening, or watching, reach out, and let me know that I’ve forgotten. I’m very happy to receive your reminder. And we’ll do it. And we’ll definitely get on the podcast. In the meantime, Peter, I really appreciate your time and best of luck with your continued recovery. And thanks for choosing to be on here.

    Peter Cass 1:21:25

    Thank you very much. And I appreciate very much what you’re doing. You know, I stumbled across somewhere in social media, and I haven’t listened to all of your podcasts. But I certainly listened to some of them. And I think it’s very valuable. And I’m sure I’m not the only person who appreciates it. So thank you. And I would say good evening. Now I have to start working.

    Bill Gasiamis 1:21:48

    Yeah, enjoy. Enjoy the rest of your day. Thanks, Peter. Thanks for joining us on today’s episode, sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone that is on the road to recovery after their own experience with stroke. If you are a stroke survivor with a story to share about your experience, come and join me on the show.

    Bill Gasiamis 1:22:12

    The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor, or you are one of the fabulous people that helped stroke survivors in their recovery. Go to recoveryafterstroke.com/contact fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.

    Intro 1:22:44

    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 1:23:01

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

    Intro 1:23:23

    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 1:23:38

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    Intro 1:23:52

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    Intro 1:24:05

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    The post Stroke And Atrial Fibrillation – Peter Cass appeared first on Recovery After Stroke.

    1 hr 26 min
  • Your Stroke Questions Answered (Part 2) – Bill Gasiamis

    Get your stroke recovery questions answered. The host of the recovery after stroke podcast answers questions from other stroke survivors about the ongoing challenges after a stroke.

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    Highlights:

    00:39 Introduction

    03:53 How Can We Continue To Improve?
    10:32 How Do I Stay Motivated?
    12:36 Fatigue And Emotional Recovery
    22:14 The Burning Sensation In The Head Post-Stroke
    27:18 Steps To Improve Your Deficits
    31:50 How Long Neuro-Recovery Takes?

    Bill Gasiamis 0:00

    If you want to improve your emotional recovery after stroke, you have to go to where the pain and suffering is. You have to go to your heart, you have to understand what is causing pain and suffering there. And you have to face it and tackle it. And only when you face it and tackle it, can you take control of it and reduce its effectiveness on keeping you stuck emotionally.

    Intro 0:26

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

    Introduction


    Bill Gasiamis 0:39
    Hello, and welcome to episode 225. And part two of the solo episode I recorded for Episode 224, where I answered stroke survivor’s questions. Now if you haven’t listened to Episode 224, go and check it out and listen to that. Because there’s some really cool questions that I had that I responded to.

    Bill Gasiamis 1:01

    And they were about things like psychological recovery, the emotional recovery after stroke, the fact that recovery doesn’t stop even though you might be a number of years post-stroke. I briefly spoke about and gave my thoughts on long COVID and fatigue caused by COVID and the similarities to stroke recovery and why it doesn’t really matter whether you’ve had a stroke or you have fatigue for a different reason.

    Bill Gasiamis 1:32

    That the approach to healing and overcoming that is by repairing the gut and supporting the gut. I also spoke about how to keep the motivation going after stroke. And then after the recovery process, which can be difficult and can be you know, long-winded.

    Bill Gasiamis 1:52

    I spoke about a politician in America John Fetterman, who had a stroke before his political campaign to run for office during the midterm elections, and I spoke about what my thoughts were on what the Trump’s had to say about the fact that John Fetterman had a stroke, and also spoke about confidence drop.

    Bill Gasiamis 2:18

    So go check that episode out and then listen to this episode because this is the follow-up episode, where I answer the rest of the questions that I didn’t get a chance to answer last episode. Now to learn more about my guests, including their links to their social media and other pages.

    Bill Gasiamis 2:38

    And to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review, and a few words about what the show means to you on iTunes and Spotify.

    Bill Gasiamis 2:53

    If you’re watching on YouTube, comment below the video like the episode, and to get notifications of future episodes, subscribe to the show and hit the notifications bell. Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier.

    Bill Gasiamis 3:13

    And that might make a massive difference to someone that is on the road to recovery after their own experience with stroke. So, in today’s episode, I’ll be answering more of your questions. And this is a follow-up from the post that I made on my Instagram page, which is @recoveryafterstroke.

    Bill Gasiamis 3:31

    Come along there. Have a look at the page follow me there. And I’ll give you my thoughts on the rest of the questions that I was asked that I didn’t get a chance to answer last week. Now my good mate Vinny Valentino asked a question, and Vinny was a musician and still is a musician.

    Stroke Recovery Questions Answered – How Can We Continue To Improve?

    Bill Gasiamis 3:53

    But at the time of his stroke, he was playing live shows with his band. And Vinny had a stroke and that compromised his ability to play. And the question he asked was how can we continue to improve when doctors and therapists say you have progressed enough?

    Bill Gasiamis 4:22

    So Vinny, what they’re actually saying is that you’re progressive enough for them to not make your recovery, their responsibility anymore. You’ve gone down the path of using the resources they were able to allocate to you. And now you’re on your own is what they’re saying.

    Bill Gasiamis 4:46

    So, if you’re somebody who has been an athlete or you’ve played guitar for many years, you know that training and coaching and recovery from all the things that you go through during your career doesn’t ever stop, if you want to be able to continue to perform at an optimum level during your career as a musician, or as an athlete.

    Bill Gasiamis 5:12

    You still have to go after the improvements to your form, after the improvements to your understanding and your knowledge about how to get the right tune out if you’re a musician, or if you’re a sports person is how to be a little bit better than your opposition players so that you can be successful.

    Bill Gasiamis 5:38

    And there is a certain point where your coach says, you know, come to training and do your coaching. And we’ll give you a rough idea of what we expect from you and what to do. But then you have to be self motivated, you can’t rely on somebody else being the center of your ongoing improvement and your ongoing achievements.

    Bill Gasiamis 6:03

    And you’ve kind of have to be your own advocate for continuing recovery. Now, what I would suggest is that you go out of your way to find a way to not be the person who gets in the way of your own recovery, whether it’s your mindset that you have to work on whether you have to have psychological counseling, because you’ve never really spoken about or discussed the things that come after stroke.

    Bill Gasiamis 6:34

    Like your mortality, or your the fact that you’ve been incapacitated, whatever it is that you have to do to get out of your own way so that the recovery can continue, you have to start doing and you have to become your own advocate.

    Bill Gasiamis 6:49

    So the best way for me to encourage people to get on with stroke recovery, without looking like they’re trying is to really nail down the nutrition and to make sure that their gut, and their brain is not being further inflamed by the stuff that we’re putting in.

    Bill Gasiamis 7:10

    So if you can find a way to decrease inflammation in your brain, you’re going to create the right environment for healing. And when you’re creating the right environment for healing for the longest period of time, or for as long as you possibly can, you’re just creating the right opportunity for any changes any recovery to continue to happen.

    Bill Gasiamis 7:36

    And I also want to remind you that it’s in, in athletics in high level athletics or sports or playing at a high level, in the music scene, whether you’re an instrumentalist or a vocalist, people work a lifetime to get to the point where they’ve achieved a 1% gain somewhere down the line, because they’ve always put in the effort that’s required to get those 1% gains.

    Bill Gasiamis 8:08

    And we know that most of us can get to playing guitar reasonably well by doing 80% or 90% of the work. But just like a Formula One car to get that extra one second around the truck, there’s a ton of money that needs to be spent to get that car over the line and make it one second faster.

    Bill Gasiamis 8:25

    The basic car as it is with the motor, and the aerodynamics, and all the things that go along, to just put that car on the track will make a car reasonably competitive, and it will take it around the track. But the big teams that actually continue to win championships spend a lot of additional time and money, the majority of their resources to get the minimal amount of return like to get that 1%.

    Bill Gasiamis 8:51

    And that’s what recovery from stroke is like you have to put in a lot of resources, a lot of time and energy to get those incremental improvements. As time goes by now, I have been on my journey for about 10 years. So I’m noticing incremental improvements all the time.

    Bill Gasiamis 9:08

    And most of the time, I’m doing the right thing, and I’m keeping out of my own way. I’m eating well. I’m not contributing to inflammation. And as a result of that, I’m noticing that I have more good days if you like, then I do bad days. But the bad days are still there.

    Bill Gasiamis 9:25

    It doesn’t mean that I have had a setback and my recovery isn’t on track. It just means that I’ve had a bad day I have to reassess what I did, how I went about it, whether I got enough sleep or not whether I ate correctly, whether my emotional state was being supported.

    Bill Gasiamis 9:42

    And from there. I have to just continue looking forward and continue going after the wind. Regardless of whether or not I have a destination that I’m actually going to ever arrive at. I don’t think you’ll ever arrive fully healed after stroke. But I think you can always work towards making those 1% incremental improvements.

    Bill Gasiamis 10:05

    So that’s my thought, I hope that goes some way to explain how to continue to progress after, you know, your therapists and doctors said that they’ve done enough for you, and then they can’t do anymore. Become your own self-advocate, and get curious about what else you can do to support your stroke, recovery and the healing of your brain.

    Stroke Recovery Questions Answered – How Do I Stay Motivated?

    Bill Gasiamis 10:32

    So I’m not sure if I answered this question previously. But I think the question was, how do I stay motivated? Well, I stay motivated, because it won’t work to be anything else other than motivated. And I’m not actually always motivated, I’m sometimes motivated.

    Bill Gasiamis 10:51

    And the rest of the time I’m pushing through being unmotivated, I’m pushing through the difficulties of not having motivation, if I wait to be motivated to get things done, or hardly ever get anything done. So I just do things because I need to do them, and I need to get them done.

    Bill Gasiamis 11:06

    And I don’t wait to be motivated to do things, I just do what’s necessary, the hard part is starting once I’m into the task, but I’m not motivated to do once I’ve spent some time moving forward on that task, I have momentum, and then once the momentum kicks in the motivation is not really necessary.

    Bill Gasiamis 11:27

    But I am trying to take care of other things like my levels of fatigue. Because if I am fatigued, if I am feeling like I’m having a bad head day, well, then I’m not going to be motivated, I’m not going to be able to achieve what I want to achieve. So therefore, I can park the stuff that I want to do, because I’m not feeling well.

    Bill Gasiamis 11:48

    And I need to take care of my health, my well-being, and I need to take care of my brain, and I need to rest more, for example. So some days, there are tasks that no matter how many there are and how urgent they are to get done, I just simply cannot get them done. And that’s got nothing to do with my motivation, it’s got to do with the fact that I physically can’t get them done because neurological fatigue gets in the way.

    Bill Gasiamis 12:09

    And once neurological fatigue gets in the way, there’s no point pushing through that. What I benefit from is resting and then attacking my task when I am in a better condition to do so. So I pick my battles. And if I’m losing the battle, well, I just retreat and go into rest mode.

    Stroke Recovery Questions Answered –
    Fatigue And Emotional Recovery

    Bill Gasiamis 12:36

    And then when I’m feeling energized enough, I go after whatever it is, that’s outstanding, but I haven’t done yet. So hopefully that gives you a little bit of insight into how I stay motivated. Now, I had a question as well, that was around fatigue and emotional recovery, I find that when I’m emotionally distraught fatigue in the head actually increases and becomes worse.

    Bill Gasiamis 13:00

    And if I haven’t dealt with my emotions, because I’ve had an argument with somebody or my wife or my kids or whatever, and I’m still stewing on those negative emotions or that negative interaction, then I can actually get nothing done. It makes my fatigue worse, and it makes my neurological symptoms worse, and it makes my deficits worse.

    Bill Gasiamis 13:21

    So I do a lot of work to try and improve my emotional state by going and seeing a counselor. I’ve been doing that for decades. And I’ve been doing that more so after my stroke experience. And I feel that when I get to the end of an argument, by apologizing or by explaining myself or by having somebody go through that stage with me so by bringing forward the into an argument or an emotional outburst, what that does is that just gets me moving into feeling better, both about myself and then physically, emotionally and mentally quicker.

    Bill Gasiamis 14:05

    And then therefore I can get on to just going about my normal life as I prefer to rather than being stuck in negative emotional states. So emotional recovery gets overlooked by physical therapists and doctors because that’s not their job. They don’t understand how to deliver emotional support other than by perhaps being caring and loving and really good at their job.

    Bill Gasiamis 14:34

    But they don’t know because they’re not skilled and they’re not part of they’re not educated to deliver emotional support. They’re educated to deliver occupational therapy and to get you out of hospital into plug your leaking brain or to you know, to restore blood flow to an ischemic event.

    Bill Gasiamis 14:56

    So, emotional recovery is something again that you needs to take responsibility for, you need to make it your job to heal yourself and become emotionally more stable, and increase your level of EQ your emotional intelligence. And you can do that by just simply going on and Googling emotional intelligence support emotional intelligence upgrade, what is emotional intelligence, and you can go and do some heart-based work.

    Bill Gasiamis 15:32

    Because at the heart is where the emotional recovery comes from. Now, if you’re somebody who has been traumatized, or been through a breakup in the past, and you’ve built barriers around your heart, emotional recovery might be a little harder to begin and a little harder to get some traction on. So what do I talk about creating barriers around your heart?

    Bill Gasiamis 15:52

    Well, if you’ve ever heard somebody, or if you’ve ever said, I’ll never let anyone break my heart, again, that’s a good chance that you’ve created a barrier around your heart, an emotional barrier so that you can avoid pain and suffering.

    Bill Gasiamis 16:10

    If you want to improve your emotional recovery after stroke, you have to go to where the pain and suffering is, you have to go to your heart, you have to understand what is causing pain and suffering there. And you have to face it and tackle it. And only when you face it and tackle it, can you take control of it and reduce its effectiveness on keeping you stuck emotionally.

    Bill Gasiamis 16:34

    Only then you’ve got to go there, you got to do the work, do it in a safe place with a coach or a therapist or with somebody that can do some heart work. And then from there, understand whether these emotional traumas that you’ve had, are worth holding on to because they may have been things that happened decades ago, when you were a teenager, or when you know when you went through a difficult breakup with somebody.

    Bill Gasiamis 17:01

    But if that was such a long time ago, and it’s still impacting your life today, and it’s stopping you from moving forward, and it’s stopping you from your stroke recovery, you really have to deal with it, you really have to go there. And you have to make sure that you face it head on, because that’s how you’re going to slay the beast.

    Bill Gasiamis 17:20

    If this thing is causing you pain and suffering, it’s contributing to your lack of stroke recovery, it’s contributing to making you remain unwell, there’s got to be more than just the physical recovery after stroke that’s a really good part of it.

    Bill Gasiamis 17:39

    But I also see stroke recovery has been three-pronged and under these particular three prongs there’s lots of other things that you can put there that fit in this particular categories. But definitely, the physical recovery is number one, it’s the one that gets focused on the most.

    Bill Gasiamis 17:54

    Emotional recovery gets overlooked, but I think it should be a quick number two, and psychological recovery, how you go about thinking about your stroke and your stroke recovery, how you think about things in general, how you think about life, how you do your thinking processes, and methods, all those things also need to be taken care of.

    Bill Gasiamis 18:18

    If you’re only doing the physical recovery, you’re missing out on 66% of recovery after stroke. If you’re doing physical recovery, and psychological recovery, then you’re missing out on 33% of your stroke recovery. You’re missing out on the emotional recovery you must do those in conjunction with each other.

    Bill Gasiamis 18:44

    You cannot do a psychological recovery. I know and I mentioned this, about what psychology actually means and how you define psychology and the origin of the word psychology from the Greek “psyche” which is soul, “psychologia” logic of the of the psyche of the soul. I mentioned that in the last episode, go check that out if you haven’t heard that yet.

    Bill Gasiamis 19:15

    Or if you need to refresh. If you’re doing only one recovery, say in your head, and you’re not going to your heart or you’re going to your head and you locate your heart, well, then you’re missing out on a big chunk of recovery. Physical recovery is really important. It involves being able to get people back on their feet somehow, whether they’re walking with devices that are supporting them or they’re walking unaided.

    Bill Gasiamis 19:41

    That’s really important and that’s where the majority of the resources are placed. That does support our emotional and physical recovery. Because if we are becoming mobile again after stroke, that goes some way to offering hope and making us feel better about ourselves. So they do work hand in hand but specific recovery of of the emotional side of stroke is targeted at the heart. And specific recovery of the way we think about stroke is targeted at the head. And you got to do your head, heart and gut support.

    Bill Gasiamis 20:16

    Your gut is part of your physical body as well, it is linked to your head. And if you avoid putting the right food in, and you’re putting in junk food and sodas and heaps of carbs, you’re going to be getting in the way of your emotional and psychological and your physical recovery. So all these things have to work hand in hand. That’s how I would describe emotional recovery after stroke to somebody.

    Bill Gasiamis 20:49

    And look, this is not something that you have to completely understand immediately, you can reach out if you want more information on this, but also let it ruminate for a little while, let it sort of sink in and kind of see what pops up in the next few days or in a week from now, about what the emotional and physical recovery after stroke mean.

    Intro 21:11

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

    Intro 21:36

    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 21:51

    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.

    Stroke Recovery Questions Answered –
    The Burning Sensation In The Head Post-Stroke

    Bill Gasiamis 22:14

    So to you what it means to you. So that’s my thoughts on that. Hopefully, I’m not rambling too much, and you do understand what I’m on about. Now, there was a comment as well. That was the next thing I want to briefly talk about, which is a burning sensation in the head post-stroke.

    Bill Gasiamis 22:31

    Now, I’m not sure what that means. But if you’re experiencing a burning sensation in the head post stroke, I would encourage you to go and get it checked out. Just in case, there’s something going on that you’re not aware of. If the burning sensation is something that you had checked out, and it’s kind of like a deficit that you’re left with.

    Bill Gasiamis 22:48

    Then perhaps what you need to do is some work to kind of try and reconcile what’s going on what might be behind it, and how much the burning sensation is interfering with your daily life. If you’re putting a lot of time effort and thought into the burning sensation, you might be contributing to making it worse by creating neural pathways that are noticing it more often.

    Bill Gasiamis 23:11

    And you can decrease how it impacts you by decreasing the amount of neural pathways that you’re creating about it and coming up with strategies to not think about it. Now, if that’s a medical question, burning sensation in your head post stroke, well, then I’m not answering the question in a medical way.

    Bill Gasiamis 23:29

    Because I’ve completely no skills to do that. But also, I can’t speculate specifically on what’s going on for you and your head. So I would go and get some advice from the relevant people about that. But they’re just my few thoughts of that. I’ve had people that I’ve coached after stroke, who have had a problem with say, the way their foot feels, and that got in the way of the way they go about thinking about things.

    Bill Gasiamis 23:59

    So the difference on the foot, the deficit that was left on the foot after their stroke was so obvious to them that they kept noticing it and kept looking at it and kept paying attention to it and kept thinking about it. Now I have a lot of left side deficits.

    Bill Gasiamis 24:15

    My left side is numb, it is tingly, it’s colder than my right side, it cramps up more than my right side, it makes me feel unbalanced. If I focused on that stuff all the time. Then you could see how easily you could get your brain overwhelmed with noticing the difference between my “good side” and my “stroke side”.

    Bill Gasiamis 24:42

    And that would really make life difficult. I tend not to focus on my deficits. I do notice them and it’s important to notice them from time to time, especially when I’m tired because I want to make sure that I don’t get too tired and ignore my deficits and then end up falling over. But I try not to create thought loops about the fact that I have these deficits all the time, every single day, I just go about life living with them.

    Bill Gasiamis 25:11

    And I try to give them thought, or my time and energy only when it’s important, only when it’s going to potentially interfere with my well-being, whether I trip over or whether we need to sit down and rest something along those lines. And this goes into the next question which I was asked, which was how to cope with deficits after having had a stroke, at a young age like 26.

    Bill Gasiamis 25:37

    Counseling, counseling, counseling, you have to change your identity from the person you were before the stroke. And you have to develop a new identity, to include your old identity, all the things you love to do, that you were passionate about in your life. And you have to go down the path of evolving your identity so that it includes all the past stuff that you appreciated doing, that you loved, and you have to somehow evolve into your new identity, that includes stroke, and your deficits, etc.

    Bill Gasiamis 26:16

    And, basically, that is a really difficult thing for people to do sometimes, because one minute, they’re “healthy” their body feels normal. And the next minute, they’ve had a stroke, and now everything’s changed. And there could be a transition time where it takes some time for you to get, well I’m not sure if the word’s comfortable but to get accustomed to or to adjust to whatever it is that you’ve experienced after stroke.

    Bill Gasiamis 26:48

    Specifically, if the majority of your life until now, everything has been “normal”. So if you’ve had a stroke at 26, everything before 26, the majority of your life’s been normal. Now, you’re in this very early stage of things being completely different. And you haven’t had enough time in that stage, to be able to integrate a different way of life, or a different version of life, into your identity.

    Steps To Improve Your Deficits

    Bill Gasiamis 27:18

    And as a result of that, you know, you’re really struggling with deficits. Or perhaps you’re not coping with them emotionally. You see the themes in these questions and conversations always go back to the same thing, you can improve your deficits by taking care of your nutrition, resting more, being well hydrated, you can improve the deficits by doing the emotional work.

    Bill Gasiamis 27:46

    And you can improve your deficits by doing the psychological work, and they all work hand in hand. They’re all a loop, everything that you put in, impacts your stroke recovery, whether you’re consuming terrible news on the morning show, that shows how many people died around the country. And pretty much nothing else. Whether you’re focusing on politics, or you’re focusing on who won the election or what it means if the party that you didn’t vote for gets in, whether you’re focusing on that stuff.

    Bill Gasiamis 28:20

    All of these things, what you’re consuming, whether it’s through a visual part of that, like through the TV, through Instagram, through ticktok through all these social medias while you’re consuming in the form of food, what you’re consuming in the form of the people that you hang around with the most, all these things interfere on how well you can cope with the things that stroke has impacted you with.

    Bill Gasiamis 28:52

    So you need to go back to basics. You need to stop hanging around with people who are not supporting you and your recovery, drama, people that make it about them. You need to find a community of people that will support you in a caring way that’s not about them. You need to change your nutritional intake and get curious about what you should and shouldn’t be consuming after stroke.

    Bill Gasiamis 29:24

    You need to get emotional support through a counselor or a coach you need to get psychological support again through a counselor or a coach. And you need to perhaps even do some personal development courses, something that’s going to provide you with some new ways to think about things and some new ideas to implement and put in towards your life now that you’ve had this life-altering experience at 26.

    Bill Gasiamis 29:52

    It is too young. Absolutely and I feel for you. But that being said it’s never good for any Ready to have a stroke at any time. But at 26, you have an opportunity to have some real life-affirming experiences, now that you’ve had this really life-changing experience, so go after it become your own self-advocate, again, go after finding the things that support your coping mechanism.

    Bill Gasiamis 30:31

    And just get really passionate about being your own urine advocate. Hopefully, again, that gives you an insight. And I’m not babbling on too much. I’m feeling a little bit off myself, I’ve got a little bit of a head cold at the moment. And I’m not in the same headspace that I was in when I recorded the first episode. So you can see that things change, they go up and down.

    Bill Gasiamis 31:00

    And you’re not always your at best game, and you’re not feeling the best. And even though most people listening might say that, it’s all good. And they’re not noticing me having an off day, I’m feeling it. But it’s not getting in the way of what I’ve got to get done. I’m not waiting to be motivated. I’m not waiting to feel 100% I’m still getting it done.

    Bill Gasiamis 31:21

    Because this is more important than my head cold at the moment. So yeah, maybe you’ll get a few more apologies for me as the episode continues. But it’s not because I’m feeling terrible about myself or self conscious or anything. It’s just that I’m not feeling my best. But that being said, after this is recorded and uploaded, I will definitely be taking care of myself and resting.

    Stroke Recovery Questions Answered –
    How Long Neuro-Recovery Takes?

    Bill Gasiamis 31:50

    So this little next question goes, no one conveyed to me how long neuro recovery will take I had a cerebellar stroke and suffered from ataxia, and balance issues, I still use a wheelchair and maybe I always will. Everyone always talks about making a good functional recovery. But I don’t know what that means. Well, that’s a really interesting thing, you don’t know what that means. Perhaps you need to find what that does mean for you.

    Bill Gasiamis 32:22

    And then implement some strategies to achieve that good functional recovery for you or to continue to work towards it. Even if you’re not going to achieve it, you must continue to walk to work towards it. And then that person continues to say, I think it’s defined differently by everyone. Absolutely. A good functional recovery is 100% defined differently for everyone.

    Bill Gasiamis 32:51

    And some people are going to be able to achieve more than others. And it’s got nothing to do with anything other than the fact of where the stroke happened and the particular circumstances of that stroke and the amount of damage that was done to the brain. So you have to define it yourself. And you have to think about it deeply. And you have to redefine it when your definition comes up short, and you have to continue to evolve it so that you know exactly what you’re going after.

    Bill Gasiamis 33:19

    Now that might take some time and might take years, but come up with some kind of a definition and work towards it. And then when the definition doesn’t fit anymore, adjusted later on down the track. But don’t overthink iit now and overthink that you have to work it out specifically right now. And you have to know exactly what that looks like for you. You don’t you just have to get started, and you have to move towards it.

    Bill Gasiamis 33:46

    And with a lot of coaching, counseling, talking again, you know, and years and time, and as you grow and evolve and emerge from this, it will mean different things down the track before right now just work out what it means to you and go for it. That person also continues to say at some point, I have brackets or wants to get back into life. It was not communicated to me that recovery would move as fast as tectonic plates.

    Bill Gasiamis 34:20

    Yeah, it wasn’t communicated to you because these people who deal with us in hospital when they get us home, don’t know that they don’t appreciate that. Because they very rarely have the opportunity to check in with stroke survivors, many years down the track to have a good database of understanding of how long people take to recover. They don’t have that constant communication to their patients down the track.

    Bill Gasiamis 34:48

    Especially if you’re a physical therapist or an occupational therapist. You see that person until they’re back on their feet and then you get them home and then you’re pretty much done with that person so they wouldn’t know that it takes so long to recover from a stroke. And, anyway, who would they be to say, how would they possibly know because it could be as fast as tectonic plates for you.

    Bill Gasiamis 35:14

    It could also be for other people faster and quicker. And we can’t give one answer to every stroke survivor, and they won’t be able to all fit into that particular version of recovery. And this is the hard thing about it. And this is why the podcast is so interesting, because every stroke survivor that I’ve interviewed, you know, there’s more than 200 now, I have all had a stroke.

    Bill Gasiamis 35:42

    But they’ve all had a different version of it, they all have recovered differently, they all have been left with different deficits, they’ve all been able to continue improving their life in different ways. And they’ve all had to accept a lot of things. And some of them have had to accept different things and other people each stroke is like a snowflake, it’s completely different.

    Bill Gasiamis 36:07

    And we cannot give people accurate information about how stroke recovery will occur. But I do appreciate your frustration with that. Because, yeah, you’re probably looking at five years down the track, and then you’ve gone well, how much longer is this going to take? Well, I don’t want to be the bearer of bad news. And I don’t want you to take this the wrong way. But it’s going to take as long as it takes.

    Bill Gasiamis 36:33

    And I’ll go back to what I said at the beginning about those athletes, or you know, the Formula One teams, they work forever in try to get an improvement, and it might be decades, it might be years, it might be forever learning and forever trying to grow. And in the space of a lifetime, five years is not that long. And if you’re going to be around, you know, into your 80s, which is the average lifespan of a male and a female in a Western country.

    Bill Gasiamis 37:07

    If you’re going to be around into the 80s. And you’ve had kind of five years on the sidelines, where things haven’t been right, which is exactly what I went through, I went through at least man, at least about six or seven years, where I was trying to get back to life, I was trying to get back to some kind of regular routine. At the time, it’s hard. And seven years goes by quick and missed out on a lot of life. It’s like a prison sentence, almost, you miss out on a lot of life.

    Bill Gasiamis 37:35

    But in the space of a lifetime, it’s like and I’ll be a bit crude. And I’ll use this saying that I like to say it’s like pissing in the ocean, it doesn’t really have a major impact in your life overall. So I’m not sure how old you are. I’m not sure how long it’s been.

    Bill Gasiamis 37:57

    But all I can do is encourage people to no matter what it is that they’re going through, continue the good fight and continue working towards improving their situation and continue to not be the person that gets in the way of your own recovery by doing some personal development by by getting some counseling, some support by surrounding yourself with the right people.

    Bill Gasiamis 38:24

    You know, by doing some amazing things for other people, actually, you’ll find that you get a lot of benefits when you actually go about doing things for other people supporting them in their stroke recovery, I find myself getting a lot of emotional support and emotional benefits from the work that I do with the podcast. And as a result of that, it’s kind of how I don’t need motivation it just kind of loops.

    Bill Gasiamis 38:54

    This positive loop of doing things for other people gives me a lot of good stuff back. It’s helped me discover my purpose. And it helps me to get curious about all the things that I can continue to do one thing at a time to support myself in my stroke recovery. It sounds like I might do a lot but I haven’t done a lot. What I’ve done is small things over a long period of time, and they all add up.

    Bill Gasiamis 39:27

    And I haven’t had a lot of energy at the beginning of my journey to do a lot of these things. I’ve had more energy at the later part of my journey to do all the things that I’m doing. So I’m just making the most of it when I can. And I just want you to be calm. It’d be great if you could be compassionate to yourself and feel like not only are you the person who’s responsible for your recovery and not getting in the way of your recovery.

    Bill Gasiamis 40:04

    That you’re also your best friend, and that you don’t give yourself a hard time for not having achieved, supposedly, all the things that you had to have achieved by now. And to not put deadlines on yourself and to not talk negatively about yourself to yourself, to not call yourself, you know, stupid or useless, or any of those things, because I mean, let’s face it, you wouldn’t do that to one of your best friends, you wouldn’t give them any feedback that makes them feel bad.

    Bill Gasiamis 40:45

    So I would encourage you to not give yourself feedback that makes you feel bad. And, also to pay attention to your wins to all the little wins and to celebrate them and to make sure that people know that you’ve had a little win. Even if it’s the fact that you know you did an extra step or two steps or 10 steps in your regular walk is to just celebrate the wins and brag about them and let people do because the more you celebrate your wins, the more you’ll be looking for all the positives that have come out of this rather than just the negatives.

    Bill Gasiamis 41:17

    Because let’s face it, stroke can have an endless supply of negatives. But it is also positive to have possible to have a lot of positives out of this terrible experience that you’ve been through. You know, you could also be setting an amazing example for your family and friends, about how how to go about recovery and how to chase getting better and how to chase getting back to work, and how to chase getting back into life, you know, you can be a great example to other people just by going about your stroke recovery in a different way, in a way that’s more supportive and more positive and more affirming.

    Bill Gasiamis 41:56

    So I hope that this particular episode has given you something to think about. And I hope that you’ll tune in, if you haven’t already listened to the previous episode 224, you’ll tune in and have a listen to that. And I hope that you’ll get something out of this, that’s going to start to make your brain think in a different way, and go down a path you’ve never been down before and get curious about what might be down that path.

    Bill Gasiamis 42:23

    And I hope that you can feel comfortable to get the support that you need to overcome your emotional challenges and your emotional problems and to overcome your psychological problems or challenges. And to understand that they all work hand in hand. And you can’t achieve a full stroke recovery without taking care of all those things, and recruiting people to help you take care of the things that you do not yet have the skills to take care of.

    Bill Gasiamis 43:07

    Because you’ve never been in a situation where you’ve had a stroke before. And this is all new territory. So you’ve got a lot of learning to do. So hopefully, you’ve enjoyed this episode. And I really appreciate you for asking the questions, and helping me create content that’s relevant to you. If you are a stroke survivor with a story to share about your experience, come and join me on the show.

    Bill Gasiamis 43:37

    Reach out via the website recoveryafterstroke.com/contact. There’s a contact form there that you could fill out and you can request to be on the show. You only have to be a stroke survivor or help somebody who’s a stroke survivor or be a family member of a stroke survivor to qualify.

    Bill Gasiamis 43:57

    The interviews are not scripted, you do not have to plan for them. All you need to do is turn up. If you reach out to me, I’ll send you some details so we can create a meeting and we can meet over Zoom and I really look forward to your feedback on this episode. Thanks again for being here and listening. I really appreciate you and see you on the next episode.

    Intro 44:16

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals their 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 44:33

    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 44:56

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

    Intro 45:18

    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 medical information changes constantly.

    Intro 45:37

    While we aim to provide current quality information and our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within 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 Your Stroke Questions Answered (Part 2) – Bill Gasiamis appeared first on Recovery After Stroke.

    1 hr 9 min
  • Your Stroke Questions Answered (Part 1) – Bill Gasiamis

    Get your stroke question answered. The host of the recovery after stroke podcast answers questions from other stroke survivors about the ongoing challenges after a stroke.

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    Highlights:

    02:25 Psychological Rehab In A Stroke Survivors Recovery

    11:15 Emotional Recovery
    20:00 Recovery Doesn’t Stop
    21:03 COVID And Stroke Recovery
    24:35 How To Heal The Gut
    30:46 How To Keep The Motivation Going?
    37:54 Will I Ever Gain More Mobility?
    47:16 What About John Fetterman?
    54:37 Confidence Drop After A Stroke

    Transcription:

    Bill Gasiamis 0:00

    When I’m fearful, that’s usually in my head that’s causing issues to stop me from trying something or doing something. And the reason is because my identity has been impacted. So I’ll explain something to you, your identity resides in your gut, in your belly.

    Bill Gasiamis 0:16

    So when your belly has been impacted by stroke, that’s right when your belly, your gut has been impacted by stroke, because remember, the head and the gut are connected, and you look back on your life and you go, I used to do this, and I used to do that.

    Bill Gasiamis 0:32

    And when you’re comparing your new self, to your old self, what you’re noticing is that you can’t identify with this new person, you haven’t been living in this new version of you for long enough and you choose things to identify with that are related to how you used to do things in the past, so for you in the past, walking looked a certain way, and now walking looks a different way.

    Intro 0:57

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

    Bill Gasiamis 1:10

    Hello, and welcome to episode 224 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

    Bill Gasiamis 1:28

    If you would like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes, and Spotify. If you’re watching on YouTube, comment below the video like the episode and to get notifications of future episodes, subscribe to the show and hit the notifications bell.

    Bill Gasiamis 1:48

    Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a massive difference to someone on the road to recovery after stroke. In today’s episode, I’ll be answering your questions.

    Bill Gasiamis 2:04

    So the way that this came about I was I made a post on my Instagram page a few days ago, which went “Do you have stroke related questions that you would like my thoughts on?” And I had a lot of responses. And today I will answer some of those questions in the hopes of giving you an insight into another point of view for you to consider or not.

    Stroke Questions Answered – Psychological Rehab In A Stroke Survivors Recovery

    Bill Gasiamis 2:25

    So here goes, it’s going to be unscripted. It’s a little bit all over the place. It’s different from my usual format. So hopefully you can come along and enjoy the conversation that I’m going to have with you. So the first question, and we’re going to start off with a cracker we had amazing questions but this is an awesome one, because I’ve got a lot to say about this one was from my friend Greg AVM superhero who would like my thoughts on psychological rehab in a stroke survivors recovery.

    Bill Gasiamis 2:57

    Now, this is huge for me, because stroke recovery, in my opinion, is three-pronged and one of those things that get missed is the psychological. And another one of those things that gets missed is the emotional recovery. Now, a lot of stroke survivors, they actually do attend to the emotional and psychological recovery by going and doing after they’ve been released from physical rehabilitation, they go and do counseling, or they do some other work to try and get their emotional state sorted, or their psychological state sorted.

    Bill Gasiamis 2:57

    And if quite frankly, if you’re not going to a counselor, after a stroke, I think you’re missing a key part of your recovery. Now, clearly, the reason why there’s so much emphasis put on the physical recovery is because just like the people who love you and see you and care for you, family and friends, etc. co workers, when they see you and they say, Hey, you look great.

    Bill Gasiamis 4:17

    And because you look well, they haven’t been able to associate the seriousness of what’s happened to you and how much you’re struggling. They can’t reconcile it, they can’t deal with that because they can only judge you by the way you look. And they’ve never had a stroke experience before so they don’t know what it’s like to really have all those challenges in the brain and then the invisible disabilities that come with stroke.

    Bill Gasiamis 4:45

    Just like them, physical therapists, like occupational therapists also, unfortunately use the same filters many times to judge and diagnose whether or not you’ve made enough of a recovery to be sent home. And they’re also then don’t have the resources to take recovery to the next level.

    Bill Gasiamis 4:45

    So they don’t have the resources to allocate to your emotional and your physical and your psychological recovery. So, when I’m talking about emotional and psychological and physical recovery, let me tell you what I’m talking about. So psychological recovery, okay, according to today’s world, is happening here.

    Bill Gasiamis 4:45

    That’s why we go to the shrink to the counselor, to the psychologist, to use our head to get through and reconcile some of the things that have happened to us, perhaps to change our way of thinking, to discover our thinking patterns and to overcome negative thinking patterns and to implement new ones perhaps, at least, for me, that’s why I started going to counseling.

    Bill Gasiamis 5:55

    Pretty much when I was 25, almost 25 years ago, I went because I didn’t like the way that I was thinking and the way that I was reconciling things that were happening around me. And I needed skills to uncover what was happening around me so that I can have a different way of looking at things so that I could work out whether I was the center of my problems, or whether everyone else was the center of my problems, well, works out that I was probably the center of my problems.

    Bill Gasiamis 6:25

    Now, I worked on my psychological processes and my psychological health. But there’s a big thing that’s missed in counseling and psychological therapy is the emotional part and that happens in your heart. Emotions are things that occur in your heart, and they are also part of your psychology and I’ll explain why.

    Bill Gasiamis 6:55

    Because if you go back to the origins of the word psychology, the origin of the word psychology is very different from the definition that you get when you type in defined psychology, for example, on Google. So when you type in define psychology on Google, the answer that you get is the scientific study of the human mind, and its functions, especially those affecting behavior in a given context.

    Bill Gasiamis 7:25

    And then there’s many more, but the next one I’ll mention is the mental characteristics or attitude of a person or a group. Now, I’m not sure how we got there. But have a listen to the complete difference of what psychology means today, and what the origins of the word psychology are.

    Bill Gasiamis 7:47

    So the word psychology was formed by combining the Greek word psych, which in Greek is pronounced psyche meaning breath, principle of life, life, or soul, or a combination of all of them, with Logia, which comes from the Greek word logos, which means speech, word, or reason.

    Bill Gasiamis 8:24

    Now, when we talk about in Greek when I have a conversation, because it’s my background, when I have a conversation with somebody, and I’m referring to my logos, I’m talking about things that are coming from my head. So it’s a conversation that I’m having with my head, but I am talking about my psychology, my psych.

    Bill Gasiamis 8:53

    So when I’ve been to counseling sessions before, and I’ve been in front of counselors, psychologists, coaches, who whomever they are, in the past, most of the conversation is happening from the head up. And we’re missing that connection with the root cause of the problem.

    Bill Gasiamis 9:18

    And it’s like going to the doctor and getting diagnosed with rheumatoid arthritis. And instead of trying to work out what the cause of the rheumatoid arthritis, inflammation in the knuckles are, what they do is they give you a medication to make the pain and suffering at the knuckles disappear and go away temporarily, so that you think you’re okay you feel okay because the medication is doing its job and making your knuckles feel better.

    Bill Gasiamis 9:51

    But the actual root cause may be getting worse, because you may not be aware of what it is and you may be contributing to it more So, when you’re going to a counselor talking about psychology, a psychologist or a psychiatrist, they are using words to describe the profession, but their profession doesn’t do exactly what it was intended to do.

    Bill Gasiamis 10:20

    When psychology became a thing with the philosophers of the ancient times, were talking about 2000 years ago, where they were discussing things. And using the term Psych and Logic to discuss things of the heart matters of the heart, they were doing that we are discussing matters of the head, we’re using our overthinking head to overthink solutions.

    Bill Gasiamis 10:54

    And you cannot solve problems in the same format that you created those problems in the first place. I’m not saying that we created our stroke problems, the stroke created that. But the way that we comprehend how to go about our own recovery is definitely happening in the head for most people.

    Emotional Recovery

    Bill Gasiamis 11:15

    And if you want to really know where recovery takes another level where it goes to the next level, it actually goes to the next level when you get into and connect with the heart. That’s the kind of coaching that I do. My coaching is about getting people to connect to the heart.

    Bill Gasiamis 11:36

    Go where it’s difficult to go because some people don’t want to experience emotions, because it’s hard, because it’s painful, because it’s difficult. But when you experience emotions, and you go there and you visit them, and you get curious about them, and you feel the pain, what happens is inevitably the pain goes away, your brain starts to stop thinking about all of the stuff that you’ve been overthinking.

    Bill Gasiamis 12:04

    Because it doesn’t need to comprehend stuff of the heart, it cannot comprehend stuff of the heart, the brain’s job is to come up with creative ways to support the hearts desires to achieve the heart outcomes. That’s what it’s for. It’s not to come up with logical conclusions to things that it has no insight in, it has simply no insight, in the emotional part of the recovery.

    Bill Gasiamis 12:36

    You have to go to the heart, you have to do emotional counseling, not psychological counseling only. You can do psychological counseling, and learn new ways to think about your emotional problems, because that’s going to be useful. But trying to solve emotional problems with the head is never going to happen, never, ever, ever.

    Bill Gasiamis 13:00

    So that’s why I think a big gap in stroke recovery is the emotional recovery after stroke. If you’re missing, that you’re missing 1/3 of the recovery, if you’re missing the emotional recovery, you’re missing 1/3. The physical recovery I like that the people who support us OTS physical therapists, all the people who support us to get back on our feet, if we can.

    Bill Gasiamis 13:31

    I think that is good because it does give wins it gives people the opportunity to feel like they can get around that they can move, they can be somewhat independent, and that does cause a good impact on the logic on the logic on the psych on the thinking brain, it causes a good thing to happen on the thinking brain where the thinking brain can get the opportunity to go, Hey, I’m back on my feet, that’s a win.

    Bill Gasiamis 14:05

    I’m going to feel good about that, or relief or whatever you want to feel about. Or I can move around in a wheelchair, I’m going to feel relief about that. I’m going to feel good about that. Or I can walk with a crutch or with a walking stick. Or even if I can’t walk properly, I can still move somewhat nd I can get to a destination even if it takes forever for ages, I think that’s a win.

    Bill Gasiamis 14:33

    Even if it’s hard. It’s still a win because it’s different from not being able to move at all. Even people with hemiplegia for example, who might not be able to get to be as freely moving as some of the other stroke survivors who haven’t been left with hemiplegia.

    Bill Gasiamis 14:52

    Even those people who for example, find an amazing technological device, apparatus, wheelchair, electric bike, whatever it is to get moving even, that’s great for the psychology, but not the real psychology the one that we talk about these days, the psychology of the brain, okay, so it’s really good for that.

    Bill Gasiamis 15:15

    But what is it doing really? Really what it’s doing is effecting the emotional state. So if you pay attention to the psychology, when you have a win after stroke, and you have some relief, and you tune into your heart, and you connect to your heart, and you pay attention to it, you will notice there has also been a shift in your heart.

    Bill Gasiamis 15:36

    A lightness, some kind of a heaviness that’s disappeared, some kind of more freedom in that space. So it’s really interesting, when you have a physical win, that you’ve been supported to achieve by your occupational therapist or your physical therapist, it’s really interesting to notice what happens in the heart.

    Bill Gasiamis 16:00

    And just to pay attention, bring your attention there, close your eyes, and just put your hand on your chest and just think about, wow, what is my heart having to say about the fact that I am now more mobile than I used to be, even if it’s taken 12, 18 months, two years, whatever it is.

    Bill Gasiamis 16:18

    When you solve one of those problems, your heart has a lift. So when your heart has a lift, think about now how your head is feeling about that your head, you’ll notice has had a different experience, as well, it might be more focused, less clouded, less painful up there, just on that particular one topic on that one topic.

    Bill Gasiamis 16:46

    So what people don’t realize is that the head and the heart are connected, they are connected physically inside the body, and they are connected by your thoughts. If your thoughts are negative, they affect the heart negatively if your thoughts are positive. In the most difficult times, if you just have positive thoughts that you believe in, it affects the heart positively, when it’s affecting the heart positively, it’s affecting the head positively.

    Bill Gasiamis 17:14

    When those two are being impacted, in a beautiful circular loop positively between each other because they’re supporting each other, the body gets impacted positively. Your cortisol levels drop, which is your stress hormone that drops, your blood pressure drops, your anxiety levels drop.

    Bill Gasiamis 17:34

    All the things that make your muscle tone changes and becomes more relaxed and enables you to move more freely. Everything starts to work in a positive direction. So your body, your heart and your gut. And your head. Well, they’ve got to be connected, right? Because they’re all in the same shell so one impacts the other.

    Bill Gasiamis 17:58

    Now, I hope that goes some way in answering the question that Greg asked, which was my thoughts on the psychological rehab in stroke survivors recovery. Psychology is huge. But let’s reframe what psychology means. It means psȳchḗ psych of the heart, logia logic, how you apply logic to healing the heart.

    Bill Gasiamis 18:30

    Do that. And you’ll have a completely different experience when you go to your counselor. In fact, if you go to a counselor who says they’re a psychologist, ask them if they can tell you what the meaning of the word psychology means. I’ll bet you they won’t.

    Bill Gasiamis 18:46

    I did that recently with my most current newest psychologist, and she had no idea and she was really surprised that the origins of the words, psychology were psȳchḗ of the heart logic logia working at the logic of the heart, completely blown away. I loved that we had a great conversation about it.

    Bill Gasiamis 19:08

    And I’m a bit of a veteran when it comes to going to counseling. It’s the best thing I’ve ever done. One of the best things I’ve ever done, and it started before I was a stroke survivor. So by the time I got to stroke recovery, I was a good seven years into my psychological counseling. And as a result of that I really took care of my psychological health. I wasn’t on the backfoot I was really taking off my psychological health.

    Bill Gasiamis 19:39

    And I had a massive advantage on other stroke survivors if I was competing with them, which I’m not where my physical therapy, they had taken care of that for me, but I had all already taken this other step so I could support my own emotional recovery.

    Stroke Questions Answered – Recovery Doesn’t Stop

    Bill Gasiamis 20:00

    Okay, so let’s move on now. Recovery doesn’t stop, someone made a comment, which was about recovery and the fact that it does stop, it doesn’t really stop. I’ve been on this journey for nearly 10 years. And I’m continuously getting either in the way of my recovery or supporting my recovery.

    Bill Gasiamis 20:26

    And oftentimes, I am getting in the way of recovery, because I’m human. But when I am doing that, the important thing is to notice when you’re getting in the way of your own recovery, when you’re your own worst enemies, which we often are, and rectify that do something to be better, so that you’re getting in the way of your recovery less.

    Bill Gasiamis 20:45

    And you’re not the person that’s causing all of your grief, pain and suffering, at least that way, if I’m not the person causing it, but my stroke has caused these things. Well, at least I didn’t feel bad about myself, making matters worse. And that’s all I’ve got to say about that.

    Stroke Questions Answered – COVID And Stroke Recovery

    Bill Gasiamis 21:03

    Now, I had another question, which was around the effects of COVID. Many people talk about getting tired brain fog COVID, Making matters worse, or increasing brain fog. And I’ve heard a lot about that, I’ve heard a lot of people who have had COVID, who are not stroke survivors, who will then suffer from long COVID and have physical brain experiences that are different from what it was like before COVID.

    Bill Gasiamis 21:38

    So that their brain may be inflamed. And as a result of that, they are experiencing brain fog fatigue, or not being able to think clearly things like that. Brain fog is often caused, believe it or not, and started and starts in the gut. And it’s one of those things where if you’re going to the head to solve the problem of brain fog, what you’re actually doing is the problem is in the brain, but you’re filling it in the brain, in your eyes, in the way you’re perceiving the world in the way you’re experiencing the world.

    Bill Gasiamis 21:48

    But that’s not the root cause of the problem. That’s not where it started. So going there to try and solve it isn’t going to fix it. The reality is, is that brain fog actually begins in the gut, it’s a sign of an inflamed gut. And there’s a lot of ways for you to support your brain health by decreasing inflammation in the gut. If you attend to your gut, and you go about decreasing inflammation there that benefit, the side effect or the positive effect, will be experienced both in your gut and also in your head.

    Bill Gasiamis 23:09

    Now, what are the things that decrease brain fog in the head, avoiding certain foods that are inflammatory, and it doesn’t matter the cause of why your brain fog occurred in the beginning, the gut gets impacted by most things before anything else in the body. And it’s secondary things that are happening in the head that have occurred or started in the gut.

    Bill Gasiamis 23:40

    And usually, it’s been a long process to get to the point where you experience fatigue, because the gut has been doing all the work, it’s been coping, it’s been trying to get rid of all of the all of the toxins, all of the things that are going on there. It’s been trying to work on that for a long time.

    Bill Gasiamis 23:56

    So by the time you get to brain fog and brain fatigue, the guts been under duress, under attack for a long time. So if you avoid certain things, so that again, you’re not making matters worse, and you’re not contributing to your own brain fog, you will be having a positive effect on your brain.

    Bill Gasiamis 24:17

    And if you’re also doing that, you’re going to be seeing a positive impact on your joints. And you’re going to be perhaps shedding some weight. And that will be a side effect of looking after the gut. So how do you look after the gut? I’m going to make this real simple because this is a massive conversation.

    How To Heal The Gut

    Bill Gasiamis 24:35

    And it’s not for this particular podcast episode. But how you heal the gut is you stop consuming sugar. And I’m talking about the stuff that’s added in foods, the white stuff, the raw sugar, you stop consuming honey, you stop consuming anything that gets metabolized by the body in the same way and sugar gets metabolized and broken down the same way as honey, as sodas, as white bread, or brown bread or any kind of bread.

    Bill Gasiamis 25:14

    Anything that is wheat based or gluten based or something along those lines gets broken down in the same way. And that break down what it does is it spikes your insulin levels. And insulin in the blood is used to get rid of sugar out of the blood.

    Bill Gasiamis 25:33

    Sugar is highly toxic to the body. And that’s why people who have high blood sugar high risk of serious health complications. So if you decrease the sugar levels in your blood, you’re decreasing the inflammatory part of the sugar going around and impacting your blood vessels, your gut, all of your extremities.

    Bill Gasiamis 25:58

    And if you decrease grains, like wheat, and other gluten based grains, what’s going to happen is you’re going to decrease the amount of inflammatory response that your body has. Now while you’re having a brain injury, what’s happening is your brain is already under attack because of the stroke, it’s already inflamed because it’s been deprived of oxygen, or it’s had a brain hemorrhage. And foods will either increase inflammation or decrease inflammation, the wrong foods are going to increase inflammation and grain is one of those things.

    Intro 26:38

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things.

    Intro 26:57

    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 27:17

    It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

    Bill Gasiamis 27:40

    Now, I am not going to do an amazing job of describing this because it’s not my expertise. It’s something that I know about and that I’ve done. And I have to put more time and effort into explaining it better. But if you want to know about how to get a better understanding of this, you need to go check out a book by an amazing guy.

    Bill Gasiamis 28:04

    The book is called Grain Brain. And it was written by Dr. David Perlmutter. And it was co-written or edited with Kristin Lohberg, David Perlmutter and Kristen Lohberg. The book is called Green brain. And it describes what grains, sugars and things like that do to the brain. So it’s really important that, again, we get our own recovery.

    Bill Gasiamis 28:34

    So it doesn’t matter why you’re experiencing brain fog. It doesn’t matter why you experience all that kind of stuff. I’ll tell you something. If for one week, you just cut out grains, and sugar out of your diet and grains includes pasta, bread, any of the stuff that you buy that’s prepackaged from a supermarket.

    Bill Gasiamis 28:55

    If you stop consuming sodas, stop putting sugar in your coffee, if you stop eating sweets, if you stop doing that just for one week, you’re going to notice a difference in the way that your gut feels, it’ll feel flatter, you’ll feel less inflamed and bloated, and you’ll start to get some clarity around your head.

    Bill Gasiamis 29:13

    Now I’m not a nutritionist, and I probably haven’t done an amazing job describing this. So don’t take my nutritional advice, get somebody else who’s an amazing nutritional coach or person to supply you with that information. But make sure it’s that they are trained appropriately and they have the correct approach to recovery of the gut and the brain.

    Bill Gasiamis 29:43

    Because we don’t want people to just tell you to take something to get rid of the symptoms. We want to deal with the root cause. So hopefully that goes into giving you some insight into my thinking about this. I think about things completely differently to a lot of people so hopefully This is gonna make you think a little differently.

    Bill Gasiamis 30:03

    So the book Grain Brain was a game changer, I found that in like, the first six months of my stroke recovery, and my fatigue went from debilitating to much, much better. And sometimes I make my fatigue worse by eating things and doing things that I shouldn’t do, or I shouldn’t eat.

    Bill Gasiamis 30:24

    But hey, I’m human. And sometimes I find myself in that situation because it’s too fun to eat something that’s weight based, like a doughnut, and have a coffee, when I’m around my friends or with my friends. So think about that. Now, the next question, I love these questions, by the way.

    Stroke Questions Answered – How To Keep The Motivation Going?

    Bill Gasiamis 30:46

    I was asked, How do I keep most of the motivation going year after year? So I don’t. And I’m assuming that question is related to the motivation for potentially, you know, doing the things that I do, recovering the way that I’m going about recovery, doing the work that I do, getting on with life, even though it can be tough some days where my left side is really hurting me.

    Bill Gasiamis 31:17

    When I haven’t slept well, when I haven’t eaten well, I’m not really motivated, to be honest with you, I don’t have motivation. I do things regardless if I’m motivated or not. And the thing is, because the work that I’m doing is too important to not do.

    Bill Gasiamis 31:34

    So even when I’m not motivated, even when I feel sick. If you sometimes go back to the other 220 episodes, there’ll be some where I’m really sick and unwell, nasally congested, and feeling terrible. But if I’ve booked an interview, I find it really difficult to cancel the booking because it takes such a lot of effort.

    Bill Gasiamis 31:56

    And I appreciate the effort that stroke survivors put in to get to an interview. So when they do, I really don’t want to be getting in the way of missing out on that particular interview. So I do it regardless of how I feel and motivation does not even come into it.

    Bill Gasiamis 32:17

    I found my passion. So at the moment, I’m working from a hotel room, you can’t see it in the background, because I’m using the zoom filter, I’m away, we went to a family wedding. And I’m doing this recording from the hotel room because I’ve been busy, and busy not being at work, busy not being at home, busy catching up with family and friends and doing things that I love.

    Bill Gasiamis 32:54

    So I went about spending as much time away as possible in this particular break, and the excuse was going catching up with family and friends. And let’s see if we can extend that a little bit. So that’s what we did. But the whole time, I’m thinking about podcast interviews that I haven’t done. And I’m thinking about stroke survivors that need support and need help.

    Bill Gasiamis 33:20

    And all I really needed to do in this break, which has been about two and a half to three weeks. All I really needed to do was find an hour to record this particular episode. And then before that, all I needed to do was asked a question on my Instagram. And by the way, if you’re listening to this, and you want to follow me on Instagram, Instagram, just the tag, the Instagram page is at recovery after stroke, no spaces all together, all lowercase.

    Bill Gasiamis 33:50

    So it’s inconvenient to record now because I had to get my wife to leave the hotel and go out and about without me and be with everybody else without me and I had to do it on my own. So it’s inconvenient. I had to carry my laptop with me. I had to edit this and upload it and get the person that supports me to get these podcasts up and running every week. When my mate Lance hey Lance, thanks for doing the stuff that you do. I had to get this ready and get it up to Lance so he can edit it and get it out to you guys by Monday.

    Bill Gasiamis 34:35

    So man I could easily be unmotivated because it’s so much effort and but I want to be doing this on what I call my holidays and on my leave. So it’s my passion. That’s what it is. I’m passionate, I have another purpose for my struggle for my stroke for the three or four years of pain and suffering before my brain surgery, for the suffering that I experienced after the brain surgery, for the pain, for the discomfort, for the loss of income for the not being able to drive, the not being able to work, I have another purpose for it. And the purpose for it is not about me, it did start off selfishly about me.

    Bill Gasiamis 35:21

    But the purpose is about other people, it’s to help other people. And you don’t have to help other people like I’ve chosen to do, your motivation might be to just go down to the local Rotary Club in Australia, we have a club called the Rotary Club people get together. And they support community projects, you might have something similar to you at home, you might have a book club at your local library, you might have a stroke group that you catch up with online, you might do anything that brings your heart alive.

    Bill Gasiamis 35:54

    We spoke about the heart earlier talk about emotional recovery. That’s how you help heal the heart, you do things for other people, you support them. And then that just creates the motivation, you don’t have to actually become motivated, you just actually take action because you get so much out of doing things of the heart things that you love. So this is something I never experienced before stroke, a podcast, connecting with people all around the world, 5000 downloads of my podcast, every month.

    Bill Gasiamis 36:28

    People coming to my website and downloading the PDF, the 7 questions to ask your doctor about your stroke, I never had any of that stuff before stroke. And it’s really great to have it available. Most of it’s for free. But if people want to pay, they can pay. If they don’t want to pay, all they have to do is listen to my podcast, and I’m contributing in a positive way to a community that I’m part of that I never wanted to be part of, that I never would have chosen to be part of, but I found myself being part of.

    Bill Gasiamis 37:01

    So now I’m just working on doing work and supporting other people. Because as I support other people, that supports me, that makes my psychology, my head feel better about itself, less concerned about all of the things that I’m going through, it lifts my heart and it makes my head feel lighter and less cluttered.

    Bill Gasiamis 37:29

    It’s full of oh my God, you got stuff to do. But it’s not full of crap. It’s not full of shit that’s bugging me that’s messing with me that I’m looping in and out, in and out in and out, that’s messing with my head, I don’t have those types of thought loops, my thoughts begin and end. And that’s because I’m actually doing things of the heart. I’m using my head to take action on my heart’s desires.

    Stroke Questions Answered – Will I Ever Gain More Mobility?

    Bill Gasiamis 37:54

    I’m finding creative ways to implement what my heart wants out of my life. That’s what the head’s job is. And that’s why I don’t need to be motivated. It just happens. So hopefully that gives you an insight into that particular question. Now, I’ve also had a question which goes, it’s been four years now from a stroke. I have gained some mobility, I go to occupational therapy and physical therapy in the last year I see little to no improvement. How come?

    Bill Gasiamis 38:24

    Will I ever gain any more mobility? That’s a question I can’t answer the last part will I gain any more mobility. But the fact that you can’t see improvement means that you’re only looking at one place, it means that you’re looking in the mirror, for example.

    Bill Gasiamis 38:42

    And things look the same as they did 12 months ago, externally, they look the same, but you’re not paying attention more deeply. And you might be using your head to create problems about the fact that you’re not seeing with your eyeballs any difference. And you might be judging your success by whether your hand moves or doesn’t move in a particular direction that you do or do not want it to do.

    Bill Gasiamis 39:15

    If you didn’t have such specific goals that were about my hand must do this by this time for me to feel successful and feel good about myself. You’re going to feel bad about yourself. You’re going to feel bad about how your recovery is going. But what I’d encourage you to do is to look inwards, to go calm, to breathe, to go into your thoughts and to have some time to think with your head to think about what other positive changes that you have seen since the first day that you had a stroke, to make a note of those things.

    Bill Gasiamis 40:00

    And once you know what those positive things are going, check with your heart, put your hand on your heart, connect to your heart, check into your heart, and ask your heart to give you some feedback on what’s most important to it right now. And I’ll bet you notice that the most important thing to your heart right now, is not what your head thinks is the most important thing. I’m not saying that it’s not important for you to get more movement out of your arm, that’s clearly important.

    Bill Gasiamis 40:38

    But I don’t believe that that’s something that is the top priority of your heart right now. If you check in with your heart right now, and ask it, whether you’re the person who asked this question or not check in with your heart right now put your hands on your heart, and just ask your heart what’s most important to me right now?

    Bill Gasiamis 41:04

    You’ll get an amazing question. And the relief that it will bring will allow you to think differently about the challenge that you’re facing as to whether or not your arm has improved in the last four years. Now. That’s the emotional part of the recovery, that’s the part that makes it okay, perhaps, might make it okay if your hand is not doing what your head wants it to do, check in with your heart and see what it says.

    Bill Gasiamis 41:49

    Now, the practical side of that, though, is I’ve known people who have experienced movement in the arm, which hasn’t worked or hasn’t moved properly, or hasn’t done what they wanted it to do or hasn’t healed after stroke. I’ve known of people who I’ve interviewed, and I’m not sure which interviews they are.

    Bill Gasiamis 42:10

    But I’ve known of people who I’ve interviewed and spoken to that have had improvements. After many, many, many years, of seeing no change, supposedly no change to the way that their hand worked on mood, there could be a number of reasons for that it could be issue with neurology with the actual neurons in the brain and the connections between the brain and the hand, it could be that those neurons might be impacted not working properly.

    Bill Gasiamis 42:42

    It could also be a thing called learned non-use. So if you haven’t heard of learning non-use, I’m going to try and explain it briefly. But you might want to look it up as well. So learned non-use is when you can’t use your arm because of the stroke initially, because the neurons are impacted, and you stop using it.

    Bill Gasiamis 43:08

    And because you aren’t using it while the neurons are inactive or not firing properly or not working properly. It just becomes a habitual thing. And you use negative Neuroplasticity. I’m not sure if it’s a real term, but it’s a term that I kind of coined or invented, I suppose in my own mind, in my own world, you use negative Neuroplasticity, to teach the arm to not move.

    Bill Gasiamis 43:33

    And if you have tought your arm to not move, it may not be the impact of the stroke that’s causing the arm to not move, it may be the fact that it wasn’t working at the beginning. And you’ve just reinforced it by not moving it early on. So these are questions to ask perhaps, of your neurologist or your occupational therapist.

    Bill Gasiamis 44:02

    In the event that you’re one of those people who have been impacted by learned non-use, you might be able to see some improvement by creating new neural pathways to rewire movement in your arm. So it’s worth a shot it’s worth asking about it’s worth working on. It’s worth contemplating.

    Bill Gasiamis 44:28

    You might also be getting in your own way of getting your arm moving again. So you might be the person that’s responsible for not having movement in your arm. And by that I’m not saying that you should be punished for that or anything like that. I’m just saying is that I was kind of getting in the way of how I was walking because I was favoring one side of my body and therefore the my my weak side, my left side what wasn’t getting the movement in the same way that it needed to get it so that it could be as strong as possible.

    Bill Gasiamis 45:10

    Because I was preferring one side of my body, the side that felt the strongest and the most stable. But the work that I needed to do was on my left side, so I was getting in the way of my left side in rehabilitation, and after that, and even sometimes, still, just out of habit.

    Bill Gasiamis 45:30

    So it might be that you’re getting in the way of your own recovery in some way. Now, with all of that being said, it also might be that your arm may be impacted and never move beyond what it’s doing right now. Because there might be physical changes specifically in their part of your brain that impacted your hand and they won’t move anymore.

    Bill Gasiamis 45:54

    But who the hell am I to say that? How the hell do I know? How can anyone say that to you, even a neurologist with a lot of great years of study and research and knowing and meeting other people and having similar experiences, even somebody like that might not be the right person to make such a definitive comment.

    Bill Gasiamis 46:21

    So who the hell am I to say that I reckon just go for broke, you got nothing to lose, go for it. If it comes back, it’s a bonus, it comes back. If it doesn’t, well, you know, different to where you started. But I reckon you should go after as much recovery as you can get.

    Bill Gasiamis 46:40

    So hopefully that gives you some insight into what I think on that particular topic. Now this episode is going really well. I’m loving the questions, and I’m going to keep going. And it seems like it’s going to take a lot longer than I thought, because there’s still quite a few more questions.

    Bill Gasiamis 46:56

    So what I might do is, answer a few more and then end this episode, and then do another one to answer the rest of the questions. So if you’ve asked a question, and haven’t had your questions answered, look out for part two of this particular episode.

    Stroke Questions Answered – What About John Fetterman?

    Bill Gasiamis 47:15

    So now the next question. This is a really cool one, because it’s already come up in a conversation. And because I’m in Australia, I don’t know much about the politics in the United States. However, I have heard about Fetterman, who is from Pennsylvania, John Fetterman.

    Bill Gasiamis 47:48

    And he is a politician that is running, I think for the Democrats. And he had a stroke as he was coming up to his campaign or during the campaign process at some point I’m not sure exactly when. And what was surprising was to find out that John Fetterman was still going to run for office, and he was still decided that he was still going to go for it.

    Bill Gasiamis 48:27

    Now when I was asked about it before I knew who John Fetterman was, and I had a brief look into it, I was concerned that perhaps it was naive to have a stroke survivor go into something as so serious and so challenging as a political election campaign.

    Bill Gasiamis 48:52

    I can only imagine what that’s like, how taxing it is how tiring it is. So I imagine there’s a big team of people around him, but still he is the center of attention, right? So he’s the person who wants to be in office. So he’s going to be front and center. I think it’s endearing to a lot of people to have somebody who’s gone through a stroke, and then overcome a lot of the challenges of stroke, and then become a politician or achieve his goal.

    Bill Gasiamis 49:24

    Because that’s what we encourage people to do. We in this community, encourage stroke survivors to get better overcome things and get back to life in some way, shape, or form. So I was concerned that it’s a bit early and perhaps for the sake of political reasoning, they disregarded the seriousness of John Fetterman’s situation and they just went after achieving their outcome of having a politician in power.

    Bill Gasiamis 49:56

    So that’d be my first concern. And especially his minders and carers around him wouldn’t know what it’s like to experience stroke. And I imagine he’ll be struggling with brain fog, fatigue, emotional issues, concern about life, whether he’s going to be alive or that kind of stuff. And maybe he’s also even gone shit, I might be dead so I might as well go after this and do the best I can while I’m alive.

    Bill Gasiamis 50:21

    Who knows? And then the next part of the question about this John Fetterman situation was that Eric Trump called him brain dead. And actually, I love that. I love that because if John Fetterman happens to win, then he can come out and say, I did alright for a brain dead person we won our race to be elected in Pennsylvania, and a brain dead person beat the Republican candidate.

    Bill Gasiamis 50:58

    So I don’t lean one way or another. I don’t mind who’s running America because I don’t live there. But how good would it be if John Fetterman won and then quoted Eric Trump and said to him you know what? We did it brain dead people beat you guys. Imagine how silly you guys are.

    Bill Gasiamis 51:20

    Now. That was me, that’s what I would do. I’d be petty like that. Maybe John Fetterman is better than me, and wouldn’t do that. But it’s what I would expect a politician to say. It’s definitely what I would expect a Trump to say. And it’s definitely what I would expect people who have never experienced stroke to say, it’s definitely divisive, it’s definitely unnecessary.

    Bill Gasiamis 51:45

    It’s cruel, it’s not necessary to be an asshole in politics, although politicians seem to become assholes very, very easily and fall into the role. I think it’s not right. But as a stroke survivor who has heard that about John Fetterman, I’m thinking that is one of the best things that they could have said to him. If John Fetterman loses, he can say, well, you guys won Pennsylvania.

    Bill Gasiamis 52:21

    But you beat a brain dead person to do it. It doesn’t say much about you guys. So that’s the approach that I would take. If you’re a stroke survivor and you got offended by what Eric Trump said about John Fetterman, don’t get offended on John Fetterman’s behalf, he probably doesn’t give a toss about what Eric Trump said, these guys are able to have personal attacks on each other and still go to work every single day and still do what they do.

    Bill Gasiamis 52:59

    By the way, politicians are their own class of people, these guys do it for a living, and then they probably behind doors, catch up and have drinks and talk about playing golf, and all that type of stuff. This is just something that we see on the surface. It’s a way to win votes. And if you’re a politician trying to win votes from people who would vote for you, because you called the opposition’s candidate braindead, well then that says a lot about the people who are voting for you.

    Bill Gasiamis 53:34

    So hopefully, if you’re a Republican or a Democrat, you haven’t been offended by my take on this. I live way, way, way, way away in Australia. I’ve got no idea what’s going on in American politics. And I would respond the same way whether it was a Republican person that was on the back end of some terrible Democrats comments. So in this situation that’s what I think about that.

    Bill Gasiamis 54:09

    And good on John Fetterman. I just hope that looking after him, and that he’s actually doing okay, and that he’s not at risk of another stroke, and that it ultimately doesn’t lead to his demise and stops him from fulfilling his desire to support his community and to be somebody a politician that helps out his community.

    Stroke Questions Answered – Confidence Drop After Stroke

    Bill Gasiamis 54:37

    But yeah, politicians are pretty low at the best of times, so you know, not really a surprise. I think I’m gonna answer this next one and then I might end this podcast episode, and then answer some more questions later on, and the question was, could I talk about dealing with confidence drop post-stroke?

    Bill Gasiamis 55:08

    Well confidence drop post-stroke is something that’s rooted in fear. Basically, if you’re feeling less confident about something after stroke, it’s rooted in fear. Perhaps it’s fear of what other people will think, perhaps it’s fear of failing, perhaps it’s fear of not being able to do something that you used to do.

    Bill Gasiamis 55:46

    Perhaps it’s a different fear, but it’s rooted in fear. And if you check into your body to work out where that fear resides, you might be surprised as to where you discover that fear residing. So when I’m fearful, that’s usually in my head that’s causing issues, to stop me from trying something or doing something.

    Bill Gasiamis 56:17

    And the reason is, because my identity has been impacted. So I’ll explain something to you your identity resides in your gut, in your belly. So when your belly has been impacted by stroke, that’s right. When your belly, your gut has been impacted by stroke, because remember, the head and the gut are connected.

    Bill Gasiamis 56:42

    And you look back on your life, and you go, I used to do this, and I used to do that. And when you’re comparing your new self, to your old self, what you’re noticing is that you can’t identify with this new person, you haven’t been living in this new version of you for long enough.

    Bill Gasiamis 57:02

    And you choose things to identify with, that are related to how you used to do things in the past, so for you in the past, walking or looked a certain way. And now walking looks a different way. And when you’re looking at yourself through walking used to be like that, I have to get back to walking the way that I used to walk in the past to be considered successfully back to walking, then you might feel really bad about your current version of what walking looks like.

    Bill Gasiamis 57:40

    And perhaps this is just me hallucinating, and this might not be your experience at all. But perhaps if you’re walking in this new way, and you can’t reconcile it with the old it’s just fear that you might not ever get back there. Or fear about what people think of you now that they see you, fear about what the Trump’s might say about you, if they see you walking like this compared to how you were walking last time.

    Bill Gasiamis 58:10

    So I think that lacking confidence is fear of some thing, fear that you might get emotionally hurt by somebody who calls you a name. fear about whether you’ll be judged by people. And honestly, I understand that it’s quite normal and common to lose your confidence. But the only thing I’ve got to say about stroke survivors, and recovery, and the losses they experience is that if you’re still alive, you may as well go for all as much life as you can possibly can get out of what’s left in years, and what you can achieve with the particular limitations that you have.

    Bill Gasiamis 59:08

    And why I say that is because I take massive inspiration from Stephen Hawking. And if you haven’t heard about Stephen Hawking, you need to Google Stephen Hawking, but his the, I’m sure he was a physicist or some real smart dude who had a condition which meant that he lost the ability to move every single part of his body.

    Bill Gasiamis 59:32

    He could not speak he could not walk, talk, move, he could not do anything. And somehow he found a way to become one of the most renowned, let me get you the actual details. Let me quickly jump on and tell you who Stephen Hawking was so I don’t do the guy a disservice.

    Bill Gasiamis 59:55

    And I’ll just type here hopefully, you’re hearing the typing. Okay, so according to Wikipedia, Stephen Hawking was an English theoretical physicist and cosmologist, and author, who at the time of his death, was the director of research at the center of theoretical cosmology at the University of Cambridge between 1979 and 2009. He was the Lucasian Professor of Mathematics at the University of Cambridge, widely viewed as one of the most prestigious academic posts in the world.

    Bill Gasiamis 1:00:39

    Now, his health, he was suffering from a condition that most of us could never imagine. His work goes on and on and on his early life, where’s his disability, here we go. Hawking had a rare, early onset, slow progressing form of motor neuron disease.

    Bill Gasiamis 1:01:10

    MND, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease, a fatal neurodegenerative disease that affects the motor neurons in the brain and spinal cord, which gradually paralyzed him over decades. So over decades, he’s slowly lost the ability to walk, talk, move, be physical in any way, he was basically just a guy that sat on his mobility scooter the entire time, until he passed away for decades.

    Bill Gasiamis 1:01:45

    And with his inability to do anything, he was still the guy who was at the center of this particular organization. At the University of Cambridge, he was still the professor of mathematics, he was still an author, he was still all these things that you’re not meant to be when you’re as severely disabled as he was.

    Bill Gasiamis 1:02:12

    And talk about all the things that he overcame, to continue working, and being the head honcho the top of his profession, for all these decades, even though he was unable to express himself, in any way, shape, or form. So if you’re lacking confidence, just find somebody who does confidence really, really well and model how they do conference, why they do it, and get support by a counselor, somebody who’s doing an emotional counseling practice somebody who knows that psychology involves the psȳchḗ psyche, and get them to help you to discover what the fears are, that you are experiencing, or that are stopping you.

    Bill Gasiamis 1:02:18

    Do some work to overcome them in the safety of, say, a counselor’s office or in the safety of a group of people that are going to support you to overcome them so that you truly feel safe, to go to those places where your fear reside, and to push through it anyway. And then you might find some amazing things that you’re able to accomplish and achieve in your life.

    Bill Gasiamis 1:03:43

    And you might find that you’re able to overcome your lack of confidence. And you might find that you are a great example for the people around you who are able bodied and have never had a stroke, but suffer from a lack of confidence. Because they’re letting their head run patterns of fear and stop them from achieving living a full life the fullest life you can possibly live.

    Bill Gasiamis 1:04:14

    So there’s some of my thoughts. And I would like to encourage you to reach out if there’s something you would like help with, if there’s something you’d like to overcome, I can support you, I’d be happy to be there for you. And if it’s not me, I would encourage you to reach out to anyone else that you’re comfortable to get support from and to help you overcome some of the challenges.

    Bill Gasiamis 1:04:45

    You’re on this planet once you’re not going to be on this planet again. You might as well go for broke you nearly died. There’s no point fearing being alive. There is no point in doing that. Thank you for your questions, there is definitely going to be another episode. So look out for that on the rest of these questions.

    Bill Gasiamis 1:05:07

    And in the meantime, if you are a stroke survivor with a story to share about your experience, come join me on the podcast. Join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is to be a stroke survivor or care for someone who is a stroke survivor. Or you’re one of the fabulous people that helps people who are stroke survivors.

    Bill Gasiamis 1:05:32

    If you go to recoveryafterstroke.com/contact and fill out the contact form when I receive it, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Now recently, all my contact forms on my downloads from our website haven’t been working, I am on to rectifying that and most of them should be up and running again.

    Bill Gasiamis 1:05:54

    So if you’ve tried before and haven’t had any luck, please do try again. Thank you for asking the questions and sending them to me. I really appreciate the opportunity to give you my perspective and my thoughts on those questions. If you don’t agree with me, awesome, if you do agree with me awesome, if you don’t like what the Trump’s said, awesome, if you like the way I responded to what the Trumps said awesome.

    Bill Gasiamis 1:06:21

    If you have confidence issues, fantastic. If you’re thinking about I would rather not have confidence issues anymore, go for it, you will be able to overcome it. If you have any questions please feel free to reach out. Thanks again for being here and listening. I really appreciate you and see you on the next episode.

    Intro 1:06:40

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

    Intro 1:07:09

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:07:34

    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. Medical information changes constantly.

    Intro 1:08:01

    While we aim to provide current quality information in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within 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 Your Stroke Questions Answered (Part 1) – Bill Gasiamis appeared first on Recovery After Stroke.

    1 hr 9 min
  • Cryptogenic Ischemic Stroke Recovery at 24 – Anita Hsieh

    Aged only 24 Anita Hsieh experienced a cryptogenic stroke and 5 years on she is on the path to recovery and continues to make progress.

    A Stroke Of Life

    Instagram

    Highlights:

    01:40 Introduction – Cryptogenic Ischemic Stroke

    05:35 Not Knowing The Symptoms
    08:23 The Initial Deficits
    13:22 Too Young To Have A Stroke
    22:27 Family Support
    32:27 Sensory Overload
    38:59 Sharing Your Story
    46:27 Taking The Time To Recover
    55:09 Dealing With Temperature Issues
    1:04:20 Sooner Rather Than Later

    Transcription:

    Anita Hsieh 0:00

    But I did tell a few friends. And then they didn’t come visit. But I still felt embarrassed, I felt embarrassed that they had to push me in a wheelchair, I felt ashamed that they had to do these things for me, I just felt like they’re staring at me if I left my room, even though I was at the rehab or at the hospital.

    Bill 0:28

    Where everyone was in a similar situation as you.

    Intro 0:34

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

    Bill 0:47

    Hello, and welcome to episode 223 of the recovery after stroke podcast. To learn more about my guests, including links to their social media and other pages, and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.

    Bill 1:05

    If you would like to support this podcast, the best way to do that is to leave the show a five-star review and a few words about what the show means to you on iTunes, and Spotify. And if you’re watching on YouTube, comment below the video, like this episode, and to get notifications of future episodes, subscribe to the show and hit the notifications bell.

    Bill 1:24

    Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that might make a massive difference to someone that is on the road to recovery after their own experience with stroke so please do share.

    Introduction – Cryptogenic Ischemic Stroke


    Bill 1:40
    Now my guest today is Anita Hsieh who was only 24 when she experienced a cryptogenic ischemic stroke that she is still recovering from five years on and continues to make positive progress. Anita Hsieh, welcome to the podcast.

    Anita Hsieh 1:57

    Thank you for having me.

    Bill 1:59

    My pleasure. Thank you for being here and making the time to reach out and become involved and be my guest. Tell me a little bit about what happened to you.

    Anita Hsieh 2:12

    I had my stroke five years ago when I was 24. So it was totally unexpected. I didn’t even know what a stroke was. To be honest, I didn’t really think about my health that much. I don’t even know the strokes science or anything like it never crossed my mind as a 24 year old girl.

    Anita Hsieh 2:39

    Like I was just doing my own thing, finishing off University getting into, you know, just applying for jobs and like going into the adult world. I didn’t expect myself to be hospitalized with a stroke.

    Bill 2:57

    I can imagine, what was life like? What were you up to? What were you doing? How are you keeping yourself busy at that age?

    Anita Hsieh 3:07

    I didn’t really think about it, like I was just busy. I was busy with school, I studied and accounting. So I was starting to do my CPA, so my certified public accounting designation. So I was pretty much very busy with studying and just being a 24-year-old going out having fun, just doing that thing.

    Anita Hsieh 3:35

    I didn’t really think about my health, I go to my annual physicals and everything is fine. And I didn’t show any physical signs of being in distress or I was sick. I look normal, I felt normal, And I just do my own thing and it just happened.

    Bill 3:57

    And you had an ischemic stroke. Do you know what the cause of it was? Did they work that out?

    Anita Hsieh 4:03

    To be honest, to this day they don’t really know. In the beginning, I was very frustrated to not know what the reason was, if I knew I could at least prevented or work on trying to, you know, be better than that part of my health.

    Anita Hsieh 4:23

    But they said that they still can’t figure it out. It just could be a spontaneous occurrence. It just happened that I got a blood clot. And yeah, I had a stroke at 24 they were trying out a lot of things and told us they still don’t know. And it’s been five years.

    Bill 4:49

    I’ve heard for a lot of women that I’ve also interviewed who have had a stroke. Often they are taking the prescription birth control pill.

    Anita Hsieh 5:05

    No, they even asked me that too. And I wasn’t at that time either. So I don’t know. Maybe it’s just my own hormones. I have no idea.

    Bill 5:19

    So there wasn’t a hole in the heart, they checked all of that stuff, they ruled everything out. And now you’re in hospital. How did you end up in hospital? What did you notice was happening to you before you actually had to go to hospital?

    Not Knowing The Symptoms

    Anita Hsieh 5:34

    I was thankfully at home. To be honest even though I was feeling the symptoms, I didn’t know I was having a stroke. I just thought like, what is happening to my body? So actually, the morning of my stroke, I had this pain, like on the side of my neck shoulder.

    Anita Hsieh 5:59

    And I was like, okay, maybe I just pulled a muscle or something. I didn’t think about it I just thought, yeah, it’s just a little pain. Because I did go to the dance class that day actually, and then at night, it just started happening, like my ears started ringing.

    Anita Hsieh 6:26

    And everything, just my head was spinning and I just couldn’t speak anymore. I just felt like my whole world was changed. And at that time, my ex-boyfriend was actually there in the house, so I was very lucky.

    Anita Hsieh 6:47

    Because no one else was in the house. And then I just said, there’s something wrong with me, please call my mom. I didn’t think to call the ambulance or the hospital. I said, please call my mom.

    Anita Hsieh 7:00

    That’s my initial thought then he called the hospital and the ambulance came, and they did the whole check while I was still semi-unconscious. And then they took me to the hospital and at that point I thought, in the ambulance, I was gonna die at 24 I was very scared.

    Anita Hsieh 7:24

    I was like, what is happening to me, this is my first time being in an ambulance. Nothing ever has happened to me. It’s not like I broke a leg or anything. Just something weird is happening to my body. And I was like, I can’t die right now I’m only 24 I just finished schooling, I still have a lot to do in my life.

    Anita Hsieh 7:43

    And I was really scared. And I was really scared to close my eyes thinking that if I do close my eyes, like I won’t wake up. So that happened all the way to the hospital. And then, at that time, once I was in the hospital, the doctors did what they had to do but I was unconscious at that time.

    Bill 8:10

    Wow, pretty dramatic. And when you work from being unconscious, and you came around, what deficits were you ou left with that you had to deal with and overcome?

    The Initial Deficits

    Anita Hsieh 8:23

    So I actually couldn’t walk. And it was interesting, because it affected my cerebellum. So I had deficits on both sides, but were very are different. Like I couldn’t feel my left side. And my right side was the one where I had like spasms.

    Anita Hsieh 8:45

    And that like, I couldn’t walk, and had double vision. And I had like short-term memory. I couldn’t really speak I had a little bit of aphasia, and all those things like I just didn’t expect to happen.

    Anita Hsieh 9:02

    I was like, what happened to me? I couldn’t even get out of the bed, I couldn’t even go into the bathroom to the toilet. And I was just like, what happened? And I didn’t even know when I woke up that I had a stroke until my mom eventually told me I was still in quite a shock.

    Bill 9:26

    It’s dramatic for anybody. And then when you’re completely oblivious to being unhealthy as in, when you’re young, and you’re fresh, and you feel like, you’re healthy and everything’s going okay, and then all of a sudden, you’re not, it’s definitely going to be a big shock to the system, and it’s going to challenge every thought, every idea that you’ve ever had about yourself.

    Bill 9:51

    Up until that point in time, it just changes everything. I mean, it did that for me. 37 I can’t say I was feeling the healthiest but I certainly wasn’t feeling unwell or like I wasn’t capable of operating efficiently or being, you know, physically capable of doing all the tasks that I needed to do.

    Bill 10:16

    When you couldn’t feel that stuff, are you thinking about the future at all? Are you just taking it day by day? How do you manage that time in your head? How do you kind come to terms with your thoughts?

    Anita Hsieh 10:34

    I wasn’t even thinking, I thought that it was like a regular cold. I was just gonna get back right into it. And next day, I’ll just be discharged and go do my own thing again. That didn’t happen I was just leaning to my optimism.

    Anita Hsieh 10:54

    But yeah, that was not the case. And, for me, for the first part of things, I didn’t really think that much, I felt like, my sole focus was to walk again, like I just really focused on my physical aspect.

    Anita Hsieh 11:11

    But once I think because the doctors are saying, because I’m young, I have a young brain, not saying that other people like it will be faster in recovery because of being young, but still, they don’t really see young stroke patients like I was so young compared to all the stroke patients in the hospital.

    Anita Hsieh 11:37

    It was hard to relate in general, I was just in my room, I didn’t talk to anyone, I was just like, on myself, because I don’t know what to expect. But once I started, like just even being in a walker like walking, assisted, that’s when it took me a while, like a few months to really wrap everything around my head.

    Anita Hsieh 12:02

    I didn’t want to tell anyone. And I wasn’t ready to tell everyone. So basically, I just was in denial, I guess. And for a bit until I sat down, I’m very thankful I had a whole team working with me in the rehab center.

    Anita Hsieh 12:23

    And that included like a therapist, and they really worked through that mental part of me, because I just couldn’t wrap it around my head. This whole time. I felt like I was just stuck in this, dream world that this did not occur, but it did. And every day it was going by.

    Bill 12:47

    You know the part where you didn’t tell anybody? Is there any shame linked into that? Is that perhaps some cultural shame, etc. Because I know that some of my relatives we wouldn’t know if they were well or unwell. Whereas I talk about everything, and everybody knows everything about me.

    Bill 13:03

    But some people keep all that stuff to themselves, but then it’s a real shock when you find out, you know, three, four, whatever months later, and it’s like, why didn’t you tell me? You know, I could have helped, or I would have loved to have been able to help or ease your burden a little bit. Did you guys have that in your family a little?

    Too Young To Have A Stroke


    Anita Hsieh 13:22
    Yeah, culturally, I definitely felt ashamed and embarrassed being my age and cultural background like, you wouldn’t expect a 20-something-year-old to be in this situation and not healthy, like what did I do? Like I must be really unhealthy to have a stroke happened to me?

    Anita Hsieh 13:48

    And yeah, I didn’t want to tell any of my family members, like only my immediate family knows. So my parents and my sister to be honest, and I couldn’t even tell my friends because even my friends think that oh, okay, like it can be better soon kind of thing.

    Anita Hsieh 14:07

    No one really knew stroke recovery and how the processes or anything, we’re just in our 20s just having fun and doing our own thing right at that time is not the time where we think about our health.

    Anita Hsieh 14:25

    which we definitely took for granted. But at that time, I don’t think I wouldn’t like to think about my health either. I just wanted to do my own thing. So culturally, for sure. It took me about half a year to be able to really open up and talk about my stroke actually.

    Bill 14:53

    In hindsight, and maybe this you’ve never thought about it before but would it have been nice to have some fun friends come to visit you while you’re spending all this time in hospital in your rehab.

    Anita Hsieh 15:05

    Yeah, actually, I did tell like a few friends. And then they didn’t come visit. But I still felt embarrassed, I felt embarrassed that they had to push me in a wheelchair, I felt ashamed that they had to do these things. For me, I just felt like everyone was staring at me if I left my room, even though I was at the rehab, or at the hospital.

    Bill 15:36

    Where everyone was in a similar situation as you. Looking back now, and knowing what you know, now, and having had five years of personal development and growth and wisdom, you see that time as perhaps a time whether you wouldn’t repeat some of those things that you did or didn’t do? Would you perhaps feel better about sharing about a difficult time in your life, rather than feeling embarrassed about a difficult time in your life?

    Anita Hsieh 16:10

    Yeah, I would definitely. Five years ago, I hated my life. I was just so frustrated. I’m like, why is this and now I’m like, that was a bus that in disguise. To be honest, I’ve learned a lot about myself over the five years that I wouldn’t have, like, it definitely did suck, having a stroke.

    Anita Hsieh 16:40

    And to be that young, and to learn a lot. That was great. I got to work on myself. And I wish I shared it earlier, because it was actually very recent, one of my co-workers, she was 21. And she just recently had a stroke too.

    Anita Hsieh 17:03

    And I realized that she was going through the same thing as me. And she felt alone and I realized that if I could share that even before that, too, like she said, it helped a lot. So yeah, definitely, that’s what I would have changed, like I would have been more open about my stroke.

    Bill 17:26

    And possibly help some other people going through similar difficult time.

    Anita Hsieh 17:33

    Yeah.

    Bill 17:33

    Yeah, makes sense. So it sounds like you’ve had a shift in your mindset in the way that you go about thinking about things. And sounds like you’ve let go some of your old beliefs, which were not serving you.

    Bill 17:49

    As a 24-year-old stroke survivor, maybe they were serving you up until that point in time, but as a stroke survivor, it sounds like you needed to dramatically change your perspective and the way you thought about things.

    Anita Hsieh 18:01

    Yeah, like I said, that it was a blessing in disguise so culturally, there’s I come from an Asian background, where school is very important, studies, everything, in general, was just very, like, you gotta be like a straight A student, you had to do this and that.

    Anita Hsieh 18:25

    Like, it’s just the expectations, I had a lot of expectations on myself too like, hold myself to that level and I don’t know what to think about it. I just thought this is what my life is supposed to be, you know, do school, get a really good job, have a family, like the typical whatever society is.

    Anita Hsieh 18:48

    And then with my stroke. Like it was just so different than, like you said, like, my perspective, like my mindset changed so much. I just kind of opened up, I found myself learning more on how different I was, how I want to be different, like, I no longer want to conform into that.

    Anita Hsieh 19:10

    Like, it doesn’t matter. In that sense. Like, I don’t have to be a straight A student or, you know, go for the top of whatever career I needed to find, like, yeah, like, I could just do things the way I want to, because I guess, I did think that I was gonna of die so I felt like a lot of regrets came too like, I felt like, I thought of a lot of regrets.

    Anita Hsieh 19:40

    If I don’t do it now I’m not gonna be 80 and think about it again and be like, I have another chance. So I might as well just start now at 24 where I have plenty of years to really do what I kind of want to do.

    Bill 19:59

    That’s profound shift in mindset. I love that. So you know, your parents, perhaps they did have some expectations of you. And they were letting you know that you need to perform well academically and all that kind of stuff.

    Bill 20:04

    But I imagine when you became unwell, they know, they would have known people that have had a stroke before, because they’re older, and they’ve been around on the planet more. And they would have definitely come across somebody that had a stroke. So when their daughter has a stroke, how did they respond? Like, did they surprise you with how they responded? Did you feel like you saw a different side of them?

    Anita Hsieh 20:38

    Definitely like, the four stages of grief. Like, my mom was definitely like my parents were definitely in denial at first, and then they were angry. Because like, why this happened, no one detected and then like the acceptance, but they took care of me, my mom was my primary caregiver.

    Anita Hsieh 21:00

    She had to do everything for my shade didn’t work. And she was at home, like bathe me that feed me, did everything for me, and I really appreciate that part she just stopped everything and it just reminded me how when I felt on that day, I wanted to call my mom, like, even though they had these expectations.

    Anita Hsieh 21:24

    I still wanted my mom because I knew my mom was going to protect me take care of me and yes, definitely. They also learned and grew with me in that sense of that cultural expectations. And we live in Canada.

    Anita Hsieh 21:47

    So that’s one good thing as there is a bit of both Western and Eastern mindsets. So it was a bit easier. And then they were with me to a lot of things, the rehab and being with me, so they saw a lot too.

    Anita Hsieh 22:04

    So it was the first time seeing me the character I am, and it also must be difficult for them to take care of me too. Because like, they thought they were done taking care of their kids, but now they’re back at it again. Taking care of me feeding me and doing everything.

    Family Support After A Cryptogenic Ischemic Stroke

    Bill 22:27

    That’s definitely a blessing when you’ve got somebody that can step in. I was 37 and my mum did exactly the same thing they were all over us like a rash. And we were completely and totally supported.

    Bill 22:43

    And we were lucky like that. I’m very thankful for that time. And my dad drove me around because I wasn’t allowed to drive. And even though I didn’t like the way he drives, and it was annoying. It was still good to have a taxi driver on speed dial.

    Anita Hsieh 23:03

    Yeah, for sure. They drove me around even though I got really nauseous when they drive because of my double visions. But I’m thankful for like, my parents, even my sister. For her to go through something like that. I have a younger sister and to see me like that too. It probably impacted them a lot too. But I’m very grateful I had them to take care of me and be there for me during that time too.

    Bill 23:35

    Yeah. So five years on are you still dealing with double vision and some of your deficits? What have you overcome?

    Anita Hsieh 23:44

    Yeah, so definitely my double vision went away I had my eyes check with the optometrist, everything was fine. I could drive again and all that stuff so yes I was very lucky, I could walk, I could do most of my mundane things. The only thing is my right hand is my dominant hand I still have a bit of spasm so it’s hard for me to write and really just like mentally too like think faster and all those things especially when I am low on energy my deficits will show like my leg will start giving up I’ll start limping more and my right leg will fail me but I could feel everything now except for a little bit of the feelings a bit different , but other than that, I’m very grateful that most of my deficits are pretty much like recovered. So I’m thankful for that.

    Bill 24:56

    That’s fabulous. So you were in hospital for what about was it six months in rehabilitation and all that? How long?

    Anita Hsieh 25:04

    Around like that, I don’t remember. I just felt like it was a very long time. Probably. Yeah, six months time. And then I was outpatient, so I just had to continue my rehab outside so it can be at home. Just go to the appointments.

    Bill 25:22

    And how long before you ended up becoming mobile again, where you gain some of your independence back and you’re able to, you know, drive again and leave the house without supervision. How long did it take to get to that?

    Anita Hsieh 25:37

    I would say, around the one year mark, I was able to, I could walk, it’s just had a cane that was and then I just got assisted walking. So like I needed someone to hold like, I could still walk slowly. And driving wise, that took the longest they took away my driver’s license until I could pass my optometrist test. I guess they have a test for these things.

    Anita Hsieh 26:11

    And they want to ensure that I’m 100% like ready to do it. So that took a while and first few times I drove it was not fun. It was an interesting feeling I had a lot of panic attacks. It was overwhelming, I guess mentally. I had a lot of trouble with multitasking.

    Anita Hsieh 26:38

    So like a lot of stimulation just makes me go like, yeah, I cannot function with so many stimulation. I still feel like that a little bit. It’s still hard for me to multitask. I need to focus on one thing, which is fine. Like, definitely know how to focus and use my brain as it’s supposed to be right now. Just work for the best for me.

    Bill 27:06

    Yeah so we’re crowds also difficult? Going into crowded locations where there’s a lot of people and noise.

    Anita Hsieh 27:14

    Definitely, I remember the first time I went to restaurant for a family dinner with like, my extended family like my cousins, aunts, uncles, and even just people moving their chair getting cutlery like, oh my gosh, like it was just so overwhelming like I felt sick to my stomach that was just so bad.

    Bill 27:37

    It is something that I can relate to. That’s why I asked and I know a lot of survivors can, even now and I have been on this journey for about 10 years. Even now when I go to a crowded cafe or restaurant, and the certain pitches of certain people’s voices, predominantly female, higher pitched voices are really, really difficult for me to handle to the point where I have been known to sit in a restaurant with my hands over my ears while we’re there, because I just can’t deal with the noise and I can go to those people and say to them stop talking or leave.

    Intro 28:21

    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 28:38

    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 29:01

    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 29:21

    And I don’t want to leave the restaurant that I’m at I want to be there because that’s why we went but I have been known to shorten my stay at a particular venue or restaurant because I can’t manage the noise and it’s excruciatingly painful to be there. So I have to excuse myself and not be there.

    Anita Hsieh 29:50

    Yeah, I definitely feel that sometimes. Well, since the pandemic happened, and there’s not as many people so I actually feel a bit better. But yeah, the noise levels even to this day it’s up to a certain amount of level I could get. I don’t know. But yeah, totally it’s really frustrating.

    Bill 30:15

    And before the pandemic, did you find yourself canceling on people and not going to events where you were invited to because of that reason?

    Anita Hsieh 30:23

    Yeah, like well before that, like, I just shut because I didn’t tell anyone where I’ve been and I just like shut down like I didn’t go anywhere and to be honest, my mom was pretty strict on what I ate. Afterwards, she was like everything, like, really healthy and I just ate a lot of home-cooked meals, because she wasn’t sure what was happening to me. So they just want to be sure, like health-wise, whatever I put in my body. Like, it’s not fat and greasy and whatever.

    Bill 31:05

    She just want to take a little bit of control back and support you the best way that she could and for her it was through nutrition and making sure that you are A, eating and B, probably eating healthy and all the things that moms want to make sure you’re doing.

    Anita Hsieh 31:21

    Yeah. So that limit me a lot but my friends that have actually come to the house and visit me. And in the beginning, my mom had to tell them to leave, like I couldn’t even do it. Because at that point, like, it was just too much. My mom was like, Are you tired? And I’m like, yeah, and she’s telling my friends she has to take a brea like, it’s too much.

    Anita Hsieh 31:52

    But eventually, they just kind of get it and then they come for a short period of time when they visit me just to talk. And then I eventually kind of went out. I went to one of my friend’s wedding, she was moving to the States. So I didn’t want to say no to that. And that was very interesting it was a lot. It was definitely a lot. I would say I don’t think it was ready for that at that time. But I’m so happy I went because she moved.

    Sensory Overload Caused By Cryptogenic Ischemic Stroke


    Bill 32:26
    I remember being at events like weddings, or, you know, full-on parties or something like that. And then needing literally the whole next day to recover and rest. Is that your experience? Does it take a long time to recharge the batteries?

    Anita Hsieh 32:44

    Yes, definitely a lot. Even before my stroke. I was more of an introvert. So I needed to recharge from just being social and going out. And then when my stroke Yeah, it was like, double the time. And one thing that I feel like it’s hard for people to comprehend because I look normal, I look fine.

    Anita Hsieh 33:09

    They don’t think that. But sometimes I just want to know that even though I love normal, I’m still dealing with some of even like the tiredness and stuff and I actually have to work twice as hard just to write or to type or do my job. And that’s one thing that sometimes could get frustrating in that sense.

    Anita Hsieh 33:38

    And even now like I got COVID I feel like I have no energy. But I’m like barely there. But like it’s been once a week and I still feel a little bit and I just sometimes I feel bad for taking so much time to rest. That’s one thing I still need to really work on. I feel guilty for taking rests even though I know that I need it.

    Bill 34:14

    I recently posted about this on Instagram, I had the same issue, I’m 10 years post-stroke. But still some days are really difficult and I can’t do anything. And the best thing that I need to do is lie down and just be there the entire day. If I’m doing that, I do feel the same thing.

    Bill 34:33

    I feel like I’m being unproductive and I could be doing more. I should be doing better and all those crazy things into my head. But the other part of 100% knows that the correct thing to do is the part where you’re lying down for an entire day and you’re recharging your batteries. And my head is what does that other stuff to me like it just messes with me.

    Bill 34:57

    And I try to switch it off but it’s definitely got something to do with, you know, your upbringing and you have to work and you have to do all these things. So I can’t always just shake it and switch it off. I feel good, especially if, let’s say, I was in the middle of doing things or the day that I was unwell, I had some stuff that I needed to do, because they were on the agenda. And I didn’t get them done and then I’m wondering about my God the next day, and what I’m going to have to do the next day to catch up. And it’s like, just get over it and stop and rest five minutes.

    Anita Hsieh 35:33

    Definitely, I definitely still, to this day, I just feel like I’m just having an internal battle with myself a lot. Yeah, it’s pretty hard to shut that. I still try to, but I’m just going back and forth. Like this is the right thing to do. This is not.

    Bill 35:59

    Because I can I’m gonna give you permission to rest whenever you need to. And you can remember that I said that. So next time you feel that way. Just remember that I said it, and whoever’s listening and watching, you have permission to rest, permission granted. Just keep that in the back of your mind, then let that be the thing that you remember during those moments where you’re doubting yourself. So how did your career end up going? Did you end up working in the field that you were studying?

    Anita Hsieh 36:34

    Yeah. So I actually, I am working right now. I just didn’t pursue my destination. I was like, No, I can’t do this right now. And like, even now today, like, recently, I have been thinking about it. And I’m like, I don’t think I could put myself into that much energy. It’s just a lot.

    Anita Hsieh 36:56

    But I’m thankful I have a job like I don’t have to reach for the top as long as I’m earning some income to support myself and I’m actually still living with my parents, I’m thankful for that, culturally, it’s pretty like a norm for like me and like my sister to live with my parents.

    Anita Hsieh 37:23

    So I’m grateful for that. I still live with my parents at this time, so I can really just work on myself. And yeah, and I was very thankful with my job, I didn’t start off full time, like I did a gradual, like, it was an ease to go back, I worked like two days for like, five hours. And then I gradually increased it while I was working with my therapist.

    Anita Hsieh 37:57

    So that was really good. I’m very thankful for that. And even when I started working, I was scared to tell people, my coworkers, colleagues, that I had a stroke too that was also interesting. And that was like, a year, I already told my family and friends.

    Anita Hsieh 38:21

    But I still felt that same way. When I had to tell new people. And it was interesting, but eventually, I did I may have the courage to just talk about I think there was an event about health and like, heart and stroke. And I was like, you know, I’m just gonna raise my hand and tell my experience and I did a lot of them actually had questions, which I’m really glad I did share my experience with them because everyone was just really shocked.

    Sharing Your Story – Anita Hseih


    Bill 38:59
    Yeah, is it good to share it from an emotional perspective? Does it help lift some kind of burden? Do you feel lighter for sharing your story is it better get it out than keep it in?

    Anita Hsieh 39:15

    Yeah, I feel free. It’s like, you want to be a butterfly and or birds like you feel like you just spread your wings. Because even if they don’t have a stroke, I’m pretty sure at least someone knows about someone who had a stroke and just even just telling one person you could spread that stroke can happen anywhere like anytime no matter what age.

    Anita Hsieh 39:51

    Like, oh, it’s soemthing for elderlies and if they’re high risk, no, like it happened to me. So I just wanted that to be out there, that it could happen to anyone. Not that I wish it did, but I mean, yeah, just to be aware that raising the awareness, it felt good. I felt like oh, wow. Now people can see me I don’t have to hide. And they know my situation and I gave them a little bit of information about stroke.

    Bill 40:28

    And, and you’ve got a legitimate reason. If you’re having a bad day, we’ve got a legitimate reason if your deficits are playing up because you’re tired, and you don’t have to worry about people wondering what is going on with her. You can basically tell them I’m feeling exhausted today.

    Bill 40:50

    And now you know, the reason why, and this is what happens sometimes. But I’ll be better with a little rest. Does that make it better? Because I imagined at the beginning, they would have been seeing some things, some of your behavior and thinking what’s going on with her?

    Anita Hsieh 41:10

    Yeah, for sure. I cried at work, because it was just too much one day and other time my manager saw, and he completely was in shock. And he’s like, you know, just go home. And I was like, Okay, I’m gonna go home. Like, I think it wasn’t enough, especially in the beginning, I was just, everything is so new, I’m learning so much information.

    Anita Hsieh 41:37

    And yeah, it was just a lot. And sometimes it gets frustrating, because I just couldn’t be as fast as I used to be. And I had to take my time. But now I’m in a good place where everyone understands that I know, my own limits. And yeah, so that is good. But in the beginning, it was just trial and error, a lot of emotions, were coming out at work that I did not want to show at work, but it did happen.

    Bill 42:13

    I remember working for three years between 2016, and 2019, in an office. Again, for the same reasons I couldn’t participate in life as normal, because I was so unwell. And friend of mine gave me a job in an organization where he was the manager that I would be reporting to. So it was very useful, because he completely knew my situation. But the people around us didn’t know my situation.

    Bill 42:44

    They often questioned my level of contribution and my output because it wasn’t as high as other people. And I wasn’t contributing to the workload the way that they were. And it was quite interesting to be seen as somebody who’s not pulling his weight, because I always thought that I did. And the reason I wasn’t pulling my weight is because I was not capable of doing more than I was doing.

    Bill 43:12

    For example, we had two monitors at our desk and those monitors, would just fry my brain, getting within a couple of hours of being at work, I wouldn’t be able to operate anymore, I’d have to get up and go for a walk for half an hour, and then come back and try and somehow get through the rest of the day.

    Bill 43:30

    And a lot of the stuff that we worked on was spreadsheets all day, every day, a whole bunch of spreadsheets that just used to make life really difficult because I had to think a lot and use my brain way more because of the fact that it was injured, and the effort was greater.

    Bill 43:52

    And numbers and spreadsheets are not my favorite thing anyway. And now they were twice as hard. And it was extremely difficult. And I remember I finally resigned after putting up with it for three years, when my friend who’s my boss came to me and said, you know, this is your level of expertise with a spreadsheet, we’re going to take it to the next level now because we’re going to change a few things around and we need to increase everybody’s skills around the spreadsheets, etc.

    Bill 44:26

    And that meeting ended, the whole team was in there, that meeting ended, there was probably about 15 people in it. And when they left, I waited for everyone to leave the room. And I immediately resigned on the spot. And he said to relax what just happened? What was so bad? I said to him nothing. I just am not going to be able to fulfill the requirements that you have of your team members.

    Bill 44:52

    And I don’t want to make it look bad and I don’t want to be bringing the team down or anything like that. There’s no way I can do this role. And that’s how I ended up leaving, I couldn’t do it to him and I couldn’t do it for myself. And I was just going to be filling space there and actually not being productive enough.

    Bill 45:19

    And maybe I was going to be causing him a problem because I know that he wouldn’t have wanted to get rid of me and sack me because he knew my situation. And he was very lenient, and he was very caring. But I couldn’t do that to him. That’s how challenging it was for me.

    Anita Hsieh 45:38

    Definitely, I feel a lot like that. Like, I’m always thinking about my job. And like what I’m supposed to do, like, even to this day, I’m still trying to find myself. But it’s a growing part of me like, I’m still trying to figure out what I could do what I do best, what doesn’t overtake my energy. I’m still struggling with that to this day, too. But I’m not to the point where like, I’m just going to resign. But yeah, like I could do my job. But I’m still taking the time to figure out myself.

    Taking The Time To Recover


    Bill 46:27
    You need time. Absolutely. I mean, at 2016, I was only two years out of brain surgery. So it hadn’t been a lot of time, things were still healing and recovering. And by 2019, I was still healing and recovering. I wasn’t anywhere near maybe my old self, I don’t know, if I wasn’t feeling like my old self still. And I think things started to work for me started to feel better for me, sort of from about 2020 onwards.

    Bill 47:03

    And then from there, I still have noticed, you know, gradual improvements in everything that I do in my memory, my ability to look at monitors my ability to focus for longer periods of time, it has gradually got better and better and better.

    Bill 47:23

    But there was always those little backward steps, those drops, where I needed to reassess and stop and settle down and do lesson and recover. So it might seem weird for somebody if they’ve just started their stroke journey or their recovery. If I say that five years down the road, it’s just still way early on in your recovery. But I think you’re testament to that and saw my and now I’m another five years ahead of you. And it’s like, it gets better even after that.

    Anita Hsieh 48:00

    That’s good. Like, I don’t know about you, I felt like even though physically, like, well a lot better. Mentally, it’s a lot harder to work hard, like to recover than physical like for myself, like the physical I had so many to work on and exercises. And I feel like I’m still being challenged each day with different things that I don’t know about. What, like some days I do, I don’t know. Like, okay, this is challenging for me. Oh, this is okay for me. Like just stuff that. I don’t know, my brain does that.

    Bill 48:42

    Yeah. And what’s interesting is there isn’t a lot you can do to rehabilitate your mind. When you’re feeling like this. This is a weapon other than rest and sleep. There’s not that much more that you can do for the body. We can go to all sorts of physical therapy, we can go to the gym, we can run we can bike ride, you can do all these things. We can play sports, whether you’re able-bodied or not.

    Bill 49:09

    You can still participate in sports, but for the brain, there’s not that many people coming to you a nd going do this let’s go exercise like this or there’s not that many people got ideas about that I don’t have any and there certainly not a lot of experts that come that there is some ideas about supporting the brain through nutrition and meditation and sleeping more and even exercise does help. But yeah, it seems like we’re lacking some tools and resources to heal a brain. That’s all I can come up with.

    Anita Hsieh 49:55

    Yeah, totally agree.

    Bill 49:59

    So you rest more therefore do you sleep more? Have you improved or changed your sleeping habits? Or have they altered on their own as a result of the stroke?

    Anita Hsieh 50:16

    I definitely. Well, before I was like, sleep is not important. I could pull, like all-nighters go out and stuff, and I definitely take it more seriously. I had definitely have a routine. But after my stroke, I could sleep for days and days, like it just needed it.

    Anita Hsieh 50:32

    But now, I have a very structured like, seven to eight hours of sleep, and it’s like eight hours is like really good. But some days, like, most majority of days, I get between seven to eight hours. When I’m really tired, I used to be so against naps. I don’t know why it’s just like, I feel like I wasted my day. But no, like I do enjoy like, if I’m really tired I will take a nap.

    Bill 51:17

    You know, in a lot of European countries. Napping is part of almost their religion. In the middle of the day.

    Anita Hsieh 51:23

    Yeah. And I was like, Okay, well, other parts of the country. Yeah, they do that. But yeah, in my mind, I was like, Oh my gosh, I’m wasting half my day, like taking a nap and I just didn’t want that or like, if I nap now I’m not going to sleep at night. But I’ve been okay. Yeah, I’ve been okay. I just really am trying to even to say, be aware of my body, like learn to listen to my body.

    Anita Hsieh 51:54

    Because I tend to just go over that a lot. Like I just I burn out really quickly. And I realized I needed to stop that or else I’m just going backwards a lot. I’m taking more breaks than I need to if I know ahead of time like if it’s just rest day or taking breaks. So that’s one thing I’m still working on to acknowledge, my body if I’m really tired or even just a little tired. Maybe it’s time for me to rest.

    Bill 52:25

    Yeah. When I think about the location you live in in Canada, I always shadow with the thought that you guys have a really cold, snowy winter and I can’t deal with I enjoy it. And the cold even where I live in Melbourne, Australia, we have a cold winter. We don’t have a lot of snow in the city where I live, but I don’t like it at all. I don’t enjoy it at all. So I’m wondering about your experience with weather? And how much if any change that you’ve experienced with the cold or the heat? Is it different for you these days?

    Anita Hsieh 53:14

    It’s more like I’m very scared to walk outside. Like I’m scared of falling. Now i’m better, because I have more confidence. After my stroke once it goes really cold and snowy there’s also like hail and ice like you can’t see it. Wintertime sometimes it gets very dangerous, even just for normal people to walk like not just me.

    Anita Hsieh 53:44

    That’s scary and the cold and the heat doesn’t really affect me because I’ve lived in Canada all my life. I was born here so I’m used to half a year being really cold and more than half the year I feel like majority of the year it’s really cold and like three months of summer.

    Anita Hsieh 54:05

    And because I’m home we have heat. So like we have to have heat or else it’ll just freeze everything. But I feel safe at home. One thing I did was more of a transition as I used to like doing a lot of activities. Like skating, skiing and all that stuff. And he couldn’t do those things anymore.

    Anita Hsieh 54:33

    Like last year I did try and it was really tough. It was scary to bounce on just to play this or it was just different and learning to cope with that. Just learning that there’s a lot of stuff that is hard for me to do. So that’s one thing but yeah, temperature-wise. I feel okay. I’m always just warming up to be outside, and in the summer, I want as hot as fire and I also like the heat, but I like both.

    Dealing With Temperature Issues

    Bill 55:07

    I never liked the cold, I can’t still deal with the cold, and it doesn’t matter how much clothes you put on, I never feel warm. And even now, with my left side, my left side is colder than my right side as a result of my stroke and the deficits that I deal with. So when I didn’t enjoy the cold to begin with, now half of my body experiences the cold even more dramatically, and it’s kind of like that’s the worst thing.

    Bill 55:38

    Like I don’t need to move 1000 kilometers north and go closer to go to warmer, you know, and stay there and be there all the time because it gets less cold in the north of Australia than it does where we live. But it’s great that you can still deal with it. And it’s not an issue. I know a lot of people get impacted by the heat predominantly because it seems to drain their energy more. And perhaps they can’t regulate their body temperature. I’m not sure why but stroke seems to cause that challenge.

    Bill 55:38

    Yeah, I guess heat wise it’s not that hot compared to other countries where I live like in Canada like, well, sometimes we get like, high 30s but that’s like the max, I think. Yeah, like it doesn’t get too unbearable. So and because like maybe because I’m always inside. Like I don’t really go out that much so I don’t feel that.

    Anita Hsieh 56:44

    But then it just reminded me that I actually took a trip with my family to Asia, we went to Thailand, and that kind of heat yeah, I definitely felt draining. I was just completely exhausted. And on top of the heat. It was just a lot of people like it was just everything all at once. For me it was a lot like I just wanted to stay in my hotel sometimes. But yeah, I still managed to do things. But yeah, I didn’t realize that part.

    Bill 57:26

    It’s hot and humid in Thailand, isn’t it?

    Anita Hsieh 57:29

    Very, very hot. And it’s just a lot of people because in Canada, everything is so spread out we have so much space like I’m just used to that kind and then when you go to Thailand where it’s super hot and humid. And then there’s so much people. I was just like, oh, this is all pot a lot. But it was fun. It was interesting to see how I managed traveling since it was like my first big big trip after my stroke with my family.

    Bill 58:04

    We did a really big trip to the United States after my stroke it takes 26, 27 hours. It’s intense and then by the time you get there, you haven’t slept properly in the rest of it. And for me, we got to New York and my wife wanted to see all of New York immediately and I want to sleep immediately I don’t want to go anywhere.

    Bill 58:35

    That was the difference in the way that we felt. And I was afraid of that trip because I didn’t know whether I was going to have another stroke or I didn’t know anything about the hospital system out there. I took the most expensive travel insurance policy, were you nervous about doing the trip and are you glad you did it anyway?

    Anita Hsieh 59:00

    Yeah, I was so nervous. I was like what if I had a stroke like you said, I bought like the most expensive everything covered because a lot don’t cover pre-existing conditions and the stroke was the pre existing condition. And like you hear stories that long flights and blood clots and I was like, Oh no, like I had a blood clot and that’s how the stroke happened.

    Anita Hsieh 59:22

    Like, I bought compression socks I was very nervous and even though mine was not 20 something hours of flight to Asia it was like 13 ish because I went to Taiwan first. And it was still long. I remember getting up a lot just to walk around because I was so nervous about my legs. It was just it was interesting. I’m glad I did it, but I also felt really different.

    Anita Hsieh 59:52

    And then beginning when I got there I was super tired. My body felt different like I felt tingly and that freaked me out like I don’t know, it’s just the air like or the heat because I’m not used to that much heat compared to Canada since we went in November like it’s cold here like not that cold yet, but so cold compared to like, it was just a big drastic change within 30 hours maybe.

    Anita Hsieh 1:00:21

    And my body just felt very tingly. And I was really worried that I’m gonna be numb or I’m gonna have a stroke. And I’m in a country where like, I don’t. Yeah, like you said, I don’t know the healthcare system in Asia, I was very nervous, but now that I think about it. I’m back here I’m very happy.

    Bill 1:00:49

    Did you have to get permission from your medical team to fly or to travel? Did you do that or not?

    Anita Hsieh 1:00:57

    No because I waited a while in the beginning. I couldn’t fly, but I didn’t fly anywhere anyways. So after that, I did speak to my family practitioner about it and she just ensured that I have everything ready like medication, and stuff and how to prepare for it because I was really worried.

    Anita Hsieh 1:01:23

    And that’s about it. You know, just compression socks because I am still on blood thinners. So I had to take that every day. And I just continue to do that. And just to make sure that you get a lot. I just registered my name to the Government of Canada just to make sure and like I just said all the things I have to say.

    Bill 1:01:58

    All the precautions. It sounds like you well planned for it. And that’s the thing we did as well. We just planned everything as much as we could to control some of those things that previously maybe I never would have considered or I never would have thought about.

    Bill 1:02:13

    We did a little bit of overthinking about it and a bit of time to plan. And in the end, it was worth it. But I was really unsure if I should go. I really didn’t engage with my wife at the beginning about the trip. And I wasn’t excited. She was wondering why I wasn’t excited. But when we got there, I really enjoyed myself it was New York in winter, so it wasn’t fun, because it was cold.

    Bill 1:02:42

    But I went anyway. But it was just after they had a hurricane back then Hurricane Sandy. And the weather was very settled after that had happened. And although it was cold, the sun was out safe, we were walking in the sun, with a few layers on, it was quite comfortable, you could really easily get around. So So while I was there, I really enjoyed myself, but trying to imagine myself there was really, really difficult.

    Bill 1:03:17

    And I think what I’m trying to say to people listening and watching is definitely if you’re thinking about traveling, if you get the go ahead from your medical team, and you put a little bit of time into the planning of it, and you don’t over think too far into the future and you get there. You might actually have a great experience. And that’s really what I’m doing to encourage people to do that.

    Anita Hsieh 1:03:39

    Yeah. I love to travel. I like to see different cultures, visit different countries. So I was somewhat devastated when they didn’t let me travel in the beginning. But that’s totally understandable. And like you said, overthiking did get to me. I was like, excited for a day then overthinking and I just kept going back and forth because I really wanted to travel but yeah, definitely speak to have medical professionals first but yeah, it’s really worth it.

    Sooner Rather Than Later

    Bill 1:04:20

    Yeah. And I also did the whole thing that you were talking about earlier, which was I might not be around next year. Why don’t I just go this year and enjoy myself? Because I don’t know what’s gonna happen next year. I definitely did that. That was kind of what got me over the line that I better do it now if I don’t do it now I’m never going to do it.

    Bill 1:04:41

    We shouldn’t wait any longer. You know, we waited until we were married for a good 10 or 15 years before we traveled anywhere with our family because it wasn’t easy. Finances and the rest of it and then my wife was like what if we don’t go now when are we going to go? We might not be healthy and well, in the future, let’s go now while we can enjoy it.

    Anita Hsieh 1:05:06

    Definitely, I think of it a lot of I still somewhat have that energy I should go now, because later on, I probably won’t have as much energy as I could. So that’s one thing. I have a lot of things that I was scared to do. Like I really want to do, I always had to remind myself like, if I don’t do it now, I don’t know when I could do it.

    Anita Hsieh 1:05:33

    So that’s one good thing about this stroke set up, like, it really challenged me to overcome a lot of my fears, which is really good, because or else I’ll just be, you know, hiding and be living in a bubble and not experiencing everything the world has to offer.

    Bill 1:05:54

    Yeah, I couldn’t agree more. While we’ve kind of come in to the end of the interview, I want to ask you one last question. And it’s about the fact that you rescheduled a couple of times to get to this particular time, which is pretty cool, people do that all the time and it’s no problem.

    Bill 1:06:14

    But when you wrote me a note as to why you were rescheduling, you said, that you’re really looking forward to this interview. And I’m curious to know, about what was it about being on this podcast or any podcast that you look forward to? What is it about? What did you want to achieve, like coming on here?

    Anita Hsieh 1:06:40

    So there’s a lot of things like talking to you, also a stroke survivor, I felt like in the beginning of my stroke journey, I didn’t have anyone to talk to I didn’t feel like it was relatable. Like I felt like I didn’t belong to anything, I felt so alone. And being able to talk to someone who also been through a stroke, even though there’s so many different kinds of stroke.

    Anita Hsieh 1:07:11

    But still being part of something and just talking like, I really wanted to do that, and it also challenged me, because speaking to someone from across the world, like Australia from Canada, is like for me, even before I’m shy, soft spoken that I like to challenge myself to do this.

    Anita Hsieh 1:07:40

    And I want to do this for myself and for everybody and share my experience too. And the whole time of like, coming out, like spreading my wings, like talking about my stroke to you and everyone who’s listening. Like, it feels great. Yeah, that’s why I was really looking forward to it and I had seen your Instagram and everything. And it just felt like yeah, I really wanted to be, I guest.

    Bill 1:08:11

    Beautiful, that is the perfect reason and any other reason that somebody might have, why they want to be on my podcast, that’s a perfect reason as well. That’s exactly why I do the podcast I do for exactly that reason. I didn’t know any stroke survivors, I didn’t feel like I belonged, I didn’t feel like anyone understood me, and I still feel that now, because the majority of people I know, thank God haven’t had a stroke.

    Bill 1:08:38

    And that’s perfectly fine. But that means that I need to talk about it often I need to talk about it with people who understand me who get me, and I need to do something positive with this terrible situation that I’ve found myself in. So you’re actually doing me a very big service by coming on here.

    Bill 1:09:00

    I really truly appreciate the fact that you did that. And I hope that you’ll feel good about the fact that there is people that are watching and listening now who are going to contact me and let me know that they really enjoyed listening to your episode, they’ll say to me, that I related a lot to the stuff that Anita shared, and that they feel less alone and they feel more understood as a result of the fact that you decided to come on the podcast. So thank you very much for being on here.

    Anita Hsieh 1:09:34

    Thank you for having me, too. This was really great.

    Bill 1:09:38

    Thanks for joining us on today’s episode. If you’re a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted. You do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor or you are also one of the fabulous people that help other people who are stroke survivors.

    Bill 1:10:00

    Go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.

    Intro 1:10:19

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

    Intro 1:10:36

    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 gaseous the content is intended to complement your medical treatment and support healing.

    Intro 1:10:52

    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 1:11:13

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 1:11:27

    If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

    Intro 1:11:50

    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 Cryptogenic Ischemic Stroke Recovery at 24 – Anita Hsieh appeared first on Recovery After Stroke.

    1 hr 13 min

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