Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • Anatomy Of The Brain – Hilary Helt

    Understanding the anatomy of the brain is something that stroke survivors may benefit from when trying to comprehend how a stroke has impacted their body and personality and their health.

    Socials:

    www.instagram.com/theanatomynerdpodcast/

    Highlights:

    02:41 Introduction

    03:30 Hilary Helt
    06:09 What Is Kinesiology
    09:01 Anatomy Of The Brain
    16:52 Change In Personality
    28:48 The Brain Is Changing
    32:54 The Parietal Lobe
    42:28 The Occipital Lobe
    46:42 The Cerebellum

    Transcription:

    Hilary 0:00

    So the parietal lobe is really interesting. I like the parietal lobe because it has to do with touch. So like we have these different neurons that like the very tips of our skin, that senses touch.

    Hilary 0:13

    And they just have like, these really crazy names and like, there’s all these weird shapes, like one is kind of like a funny little oval, and it just like gets smaller and smaller and smaller.

    Hilary 0:23

    Like there’s different neurons that sense, pressure. And there’s different neurons that sense pain. And that all goes to your parietal lobe when you’re sensing all of that. And then there’s others that sense temperature.

    Hilary 0:37

    So like if you’re going to, you know, touch that hot stove, right? That’s always the example why does everyone always use that example?

    Bill 0:43

    Because it’s so true.

    Hilary 0:47

    Yeah, and then your neurons are gone to that parietal lobe. Don’t touch that. That’s hot.

    Intro 0:55

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

    Bill 1:08

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

    Bill 1:19

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

    Bill 1:35

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

    Bill 1:54

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

    Bill 2:05

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

    Bill 2:21

    This is Episode 151, and my guest today is Hilary Helt the host of the anatomy nerd podcast and in today’s episode, we discussed the different lobes of the brain and how a stroke in one of them may impact your body and your personality.

    Introduction


    Bill 2:41
    Hilary Helt Welcome to the podcast.

    Hilary 2:44

    Thank you so much, Bill. It’s so exciting to be here, thank you for having me.

    Bill 2:49

    Exciting to have you here. Now that I know that you’re very proficient in cleaning up spills and solving problems and fixing things. Did you need to go and get some more kombucha?

    Hilary 3:03

    I’m okay. I’ve got a sip left. But you know, yeah, right before we press the record button kombucha everywhere. I’m used to cleaning up spills, I’ve got a toddler. So just another one to clean up.

    Bill 3:19

    Your you’re the founder of the anatomy nerd podcast. But before we talk about that, tell me a little bit about you and what you do.

    Hilary Helt


    Hilary 3:30
    So I am a podcaster and a mom, those are my two big roles for right now. But my past is a little bit more telling of how I came to be a podcaster I fell in love with the human body and how it works several, several, several years ago in undergrad.

    Hilary 3:50

    And I decided to get my degree in kinesiology. And kinesiology is the study of human body movement. And that was getting me on the path to become a physical therapist. So I studied that for several years and was getting into PT school and all that jazz.

    Hilary 4:08

    And in the interim, I was in PT clinics and hospitals and all that jazz and just working with patients with several different things going on needing rehab. One of them being strokes.

    Hilary 4:25

    And then you know, a really common one is like knee replacements and shoulder surgeries and all that stuff. But you know, my love for the human body had kind of started then and has never really gone away.

    Hilary 4:41

    A little bit of what happened with PT school as I got in, but I decided not to go. And so that led me to other avenues in my life. One of them being this podcast. So I am the host of the anatomy nerd podcast and I really just love that it’s just an educational piece for anyone.

    Hilary 5:02

    You don’t have to have a degree in kinesiology or, you know human anatomy or you know biology or what have you to tune in and learn a little bit and nerd out a lot a bit about the human body. So that’s what I do.

    Bill 5:21

    In a little bit we’re gonna nerd out on the brain. But first, we got to talk kinesiology. Because what is that? It seems really weird and bizarre. I’ve been the recipient of Kinesiology sessions, I suppose.

    Bill 5:34

    And it’s so weird and bizarre, I do not understand it at all. But I really enjoy it, I enjoyed, and I appreciate it. And what’s really weird is that, you know, there’s a guy or a girl depending on who you go and visit who you know, they touch something at some part of your body and it changes something at another part of your body, proving the concept of you know, the hip bones connected to the thigh bone, the head bones connected to that bone, and all that kind of stuff.

    Hilary 6:05

    It’s all connected in like a really funny way.

    What Is Kinesiology – Hilary Helt


    Bill 6:09
    Tell me about that. Tell me about Kinesiology and what it is if we can give people an understanding of what it is and then how it helps, because I’ve definitely benefited from it. Since the stroke and even before the stroke.

    Hilary 6:22

    Yeah, so at its very basics, kinesiology is just the study of human body movements. So we’re talking about, like, what goes on, in your body, when you take your arm from slack to moving it up, and you have a cup in your hand, and maybe you’re knocking over a cup on the table.

    Hilary 6:40

    It’s studying, like the force that your your bicep and your tricep are using to lift that arm up, and that the nerves that are coming through down your brain to your spinal cord out into the muscles to fire those muscles to make those muscles move and all that jazz.

    Hilary 6:56

    So it’s a study of how your body is working to make all of that stuff happen. And you can get really, really deep into like the biomechanics side, like studying exactly like the amount of force, it’s going into the muscles to lift that glass.

    Hilary 7:13

    Or you can go you know, into the major, like biochemistry part of it, like studying the actual you know, chemicals and hormones and all the little nitty gritty bits like that, that go into, you know, making that muscle move and like making, you know, your calcium channels open and all that stuff.

    Hilary 7:34

    Like it gets really complicated in that avenue. So the specialty that I went into for kinesiology was Exercise Science, because, you know, like I said, I was going to be a physical therapist.

    Hilary 7:48

    And so with all of that study that is mostly just kind of just focusing on how the body moves, and how the body doesn’t move when something is wrong. So that kind of ties into our theme for today’s episode talking about strokes, right? Because when you have a stroke, that’s when kind of things go a little bit off.

    Bill 8:13

    A lot of people seem to get the impression, and it’s the way they talk about it is that my hand doesn’t work or my leg doesn’t work, but it’s actually not the hand or the leg that’s not working.

    Bill 8:24

    It’s the brain that’s impacted, that’s causing that connection to be different. And therefore the feedback isn’t going to the brain, it’s not that the hand and leg don’t work, it’s that the information is not getting back to the brain, so the brain doesn’t know what to do with that arm or leg, is that accurate?

    Hilary 8:43

    That’s 100% accurate. Yeah, so when you have a stroke, you know, it’s often a brain bleed, or a brain like a blood blockage and so that means that like the brain isn’t going to work as it should, it’s not going to be able to send those messages.

    Anatomy Of The Brain


    Hilary 9:01
    So you have your brain and your nervous system is kind of divided into two parts, you’ve got your central nervous system, which is your brain and your spinal cord. And then you have your peripheral nervous system. And that’s like all of the nerves that come out of your spinal cord and like down your limbs and down to your to even to like that very down to the very tip of your toes.

    Hilary 9:21

    That’s your peripheral nervous system. But it all kind of starts with our big, beautiful brain, you know, and when you have a stroke, depending on where you have the dysfunction in the brain due to the stroke, it’s going to kind of affect how you know what’s going on in your body.

    Hilary 9:39

    So say you have a stroke in your frontal lobe. So like right here, so let’s kind of, you know, describe the brain a little bit so it has lobes. So the frontal lobe is right here kind of makes sense front.

    Hilary 9:54

    And then you’ve got your parietal lobes kind of right behind it. So like right kind of here, you can kind of see, and then you’ve got your temporal lobes on the side, kind of right behind your ears, and then your occipital lobe right in the back.

    Hilary 10:09

    And then, so like the brain is connected into its two sides, and then it’s connected in the middle. And then you have your brainstem and your cerebellum in the back this like little like mini brain, it’s called like that the baby brain in the back, and that’s kind of like tucked right on in there.

    Hilary 10:27

    It’s like, right at the nape of your neck. And then it goes down to the brainstem into the spinal cord, the spinal cord is like that big, you know, mother lode, that’s like, we’re all of that the direction is happening, that’s like the big four way stop, you know.

    Hilary 10:42

    That’s where everything is happening where all the direction start going, and then all of your spinal nerves that come off, and then go down, you know, down to your arms and your legs.

    Hilary 10:54

    So but so the different lobes, the frontal lobes, and the parietal and all that jazz, that’s kind of what we’re talking about when we’re talking about injuries involved in brain injuries involved with strokes.

    Hilary 11:07

    So for example, if you have a stroke in your frontal lobe, the frontal lobe is mostly involved with like your personality, your behavior, you know, your mood, and stuff like that. So if you have a stroke, right there in the front, those kind of things are going to be really changed and really affected.

    Hilary 11:30

    And, it’s kind of wild, because it’s really, really different for everyone. one stroke in one person is going to look, even if it’s in the exact same spot, which is very rare. But if it’s in the exact same spot in two different people, it’s going to present differently. So it’s kind of wild.

    Bill 11:50

    So when the stroke happens in the frontal lobe, is it the frontal lobe on the left of the head, and the frontal lobe on the right of the head do different things, or do they do similar things, but differently?

    Hilary 12:04

    That’s exactly it, that’s more accurate. I’m glad that you mentioned that, because that’s actually a really important detail that I left out. So we have our left and right lobes. But and they do so like your, you know, the lobes work similarly, but differently, if you have a injury on the left side, your right side is going to be affected.

    Hilary 12:26

    Because one half the left side of your brain controls the right side of your brain. And the right side of the brain controls the left side of your brain, or the left side of your body, excuse me, I may have said that on but just think of it as it’s switched, which is really kind of funny.

    Hilary 12:41

    And that happens that the brain stem in the back. And it’s just, it’s just like, No, I don’t recall the explanation of why that is right now. But it’s just just kind of how we’re built. So if you, if you have an injury in your, you know, your right side of your brain, you’re likely going to have you know, something going on, on your left side, just remember that, which is weird. It’s not something that you that’s not how you would imagine it happening, right. But that’s how it is.

    Bill 13:08

    So that happens at the brainstem?

    Hilary 13:14

    That switch it’s like a neural pathway. So like, neurons are really interesting, right? It’s like there’s a, there’s a million neurons in the pathway that goes from like, the action in your brain to your fingertips or your toes, or whatever it is, you know, there’s a million neurons that are all connected, that, you know, make that actually happen. And that switch happens between some neurons in your brain stem right back here. It’s interesting.

    Bill 13:43

    Okay, so that, so then, people who experience a stroke in their frontal lobe, it might impact their personality. So for people that are listening, who are caregivers, or even stroke survivors, what are some of the changes that might happen if somebody has a stroke in the frontal lobe? As in how does their personality change? I know there’s a whole bunch of different you know, there’s probably, limitless ways, but give us a bit of a couple of examples of how that might change.

    Hilary 14:23

    Yeah, no, that’s a really, really great question. Especially since it you know, as you said, it can be different for everyone. It could be as simple as you know, let’s say Jane had a stroke. And she used to be a really easy going down to earth gal and you know, you would throw something matter and she’s like, okay, cool, let’s go.

    Hilary 14:42

    And then suddenly, after her stroke, you know, she’s just not, you know, it’s however much time after her recovery, and she’s just kind of not as easy going. She’s kind of, you know, really wanting to stick to a schedule. You know, she’s like a little thrown off if her schedule is thrown off.

    Hilary 14:59

    You know, she’s just really kind of not as easy going, you know, it could be something like that. Or it could be somebody who was more high energy is just kind of has like a more flat effect, it could be something like that, too. So it really, really is so different for everyone. I don’t think that I can stress that enough.

    Hilary 15:21

    And I think that, you know, your listeners who have experienced strokes before can definitely, definitely let that you know, that will resonate with them. And you know, that they’ve probably have spoken with others who have had a similar stroke to those and like, well, yeah, I felt this way and this way, and then you feel that way, in that way.

    Hilary 15:36

    And it’s just, all, it’s all different. You know, that’s, it’s kind of what’s really tricky about the brain. And what kind of fascinates me is that, you would think that it’s all the same, right? Like this part makes you feel that it’s, and this part makes you taste that and this part moves your right leg.

    Hilary 15:50

    And you know, you would think that, okay, if I have a brain bleed I’ve had burst blood vessel that it would just kind of shut that off, like a light switch, right? But it’s not, it’s tricky.

    Bill 16:02

    Yeah, and people who experience a change of personality. Often, the family members or the loved ones think that they’re doing it on purpose, or they’re being lazy, or they tend to label that it tends to be a really difficult thing to overcome, because fatigue might be causing a change in personality alone, let alone an exact challenge in the frontal lobe.

    Bill 16:29

    And then it’s hard for people to express themselves as well as to why they’re behaving a certain way, they might not even have an idea that they’re behaving a certain way, it’s quite complex. In that, I have a lot of caregivers who contact me and say, you know, my dad, my son, brother, whoever is had a stroke.

    Change In Personality


    Bill 16:52
    And now they won’t do this. And they won’t do that. And they’re behaving like this and they’re behaving like that. And I really don’t understand it. And it’s frustrating, and it’s annoying me, and they don’t realize that just as a result of the stroke, that person may not be doing it intentionally.

    Hilary 17:07

    It can be really hard when your loved one is completely different after a stroke, right? Especially if you’re, I mean, you know, you your loved ones have been the same way that same person for as long as you’ve known them, right? And then suddenly, they’re a different person.

    Hilary 17:21

    And it’s an it can be really challenging. And the biggest thing for the, you know, stroke survivor, and for the family member, or the caregiver to remember is to just to be patient, you know, every day, even Every moment is different in stroke recovery.

    Hilary 17:38

    And those differences, they might be temporary, and they may not be and you just kind of have to remember to be really patient with yourself and be really patient with, you know, your family and that, you know, it’s gonna get better. It is, you know, but also just accept that man, it’s friggin hard. It’s just hard, you know, and gave yourself a lot of grace for that.

    Bill 18:08

    Yeah. Right tips. So what does the temporal lobe do? What’s the point of that?

    Hilary 18:14

    Yeah, so the temporal lobe is a little bit different. So it is involved in like, understanding memory. And then understanding language. So that can be like, there’s a part called the wernickers area. And if that part is affected, and like your ability to like, you know, convey and and like, understand, communication is affected and is really difficult.

    Hilary 18:45

    Hearing is also proud of the temporal lobe, depending on where that stroke is. And then sequencing and organization. So like, getting that like, this piece goes here, and then this piece, versus this piece goes here. And then that piece, if that makes any sense.

    Hilary 19:01

    So like, maybe organizing a phone book would be challenging, or maybe organizing your kitchen or like, Oh, wait, where does this cup go, you know, something as simple as that is like a, you know, a stroke survivor trying to just empty the dishwasher, you know, they’ve grabbed that cup out of the dishwasher, and they’re like, cool, I don’t remember where this goes.

    Hilary 19:22

    You know, something is hard. And as you know, just challenging is that it can be what happens and it’s just a it’s a funny little area of the brain because it covers a lot like, there’s how a lot of different things like language and memory and hearing like that’s all very different.

    Hilary 19:40

    And it all can be affected when you have a stroke in that area. Memory is a tough one because, you know, you’re already kind of dealing with like the confusion and the fuzz. After after a stroke.

    Intro 19:53

    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 20:10

    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 20:33

    It’s called the seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke will 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.

    Hilary 20:55

    That’s kind of what the temporal lobe does. It’s really interesting.

    Bill 20:59

    So as a PT, or a therapist, you guys don’t really get involved. If you were to go down that path, you don’t really get involved with supporting memory and that type of thing. That’d be a different person wouldn’t it?

    Hilary 21:13

    Yeah. So your PT is really just going to get you walking again, get you moving your arms again, get you, you know, they’re going to be focusing on your body movement, your occupational therapist, maybe that individual that focuses more on, you know, getting some memory stuff back getting like that, you know, that organization back, like giving you tools to get through your day, as the new individual that you are, you know, and that’s really important.

    Hilary 21:45

    So like PT, and OT, occupational therapy, and then speech therapy. And those three individuals working together in like a Recovery Team for a stroke survivor is really important, especially if that individual has lost some, some speech due to, so that speech is also in the frontal lobe.

    Hilary 22:10

    So if the individual had a stroke in the frontal lobe, and it affected their speech, then a speech therapist would be really, really helpful to be able to get that back. So and that the good thing is that is that you know, it can come back, that’s, that’s something that’s really, really important to remember is that you can recover after a stroke, it’s, it’s different for everyone.

    Hilary 22:31

    Like we’ve said, 50 times, but, and the duration may be different somebodies recovery may be faster than another person’s, but that’s definitely not anything to read into, or to compare or whatever, that’s just the fact of the matter.

    Hilary 22:46

    But, working with those three individuals, your physical therapist, your occupational therapist, and your speech therapist, you know, if needed, that’s going to be able to really help, what’s going to be the most helpful, you know, and then whomever you kind of feel, I feel like, the bigger your recovery team is, the better, you know.

    Bill 23:04

    Yeah, it’s true. Sometimes though, it does get overwhelming when you have a lot of appointments, I remember having three or four appointments in a week, and then just domains that you can’t do anything else, you can’t get back to work.

    Hilary 23:16

    I’ll be pretty tuckered out after that.

    Bill 23:17

    Yeah, and if you’ve got to get to an appointment, my outpatient appointments were maybe, you know, a 15 minute drive from home, but getting ready to get to that appointment, because I wasn’t driving at the beginning, meant that I had to travel for an hour.

    Bill 23:37

    And then be there for an hour and then travel home for an hour. So you lose three hours. And that was a long, a long, whole three days a week, four days a week, out of your day. It’s really tough.

    Bill 23:49

    So I think I would have benefited from having them alternate. So one week, I would have had say PT and then the following week might have been better to have OT and instead of having three or four appointments a week, I only have one or two appointments a week that would have made a huge difference. But I know that the medical professionals what they like to do is make the most of that early recovery phase, and then cram in as much as they can there.

    Hilary 24:20

    That’s that’s really important, that sort of rash of like, let’s keep as much as we can. We’re gonna bombard you. And I do wonder, you know, I’m not versed in the current research, but I do wonder if we will maybe later on, you know, dive more into the research and figure out if that heavy of an intervention is as helpful as we as we believe it is because it is it’s very energy demanding on a an injured brain.

    Hilary 24:50

    You know, the brain requires so so so much energy, excuse me, and when it’s injured, it’s just It’s like expecting your arm, your broken arm to lift a milk carton, right? Like, that’s a lot it’s hard, you know.

    Hilary 25:08

    So if you think about it with your brain, like, you know, you’re bombarding it with all of this, these activities and these drills and all of this stuff from your, into your PT, you know, to your st. You know, when you haven’t done that before, and you’re injured, you know, it’s, it’s hard, but there’s definitely a reason for it. Right? Like, I’m not getting that, but it is hard.

    Bill 25:27

    Yeah, I think the reason is legitimate at the same time, I think it’s well worth re looking at that. Because when, when often they bombard you with that amount of therapy, and then pull the pin on it, and then it stops. Because they feel like okay, well we’ve done the three months worth of therapy in that window is when you’ll see all the recovery.

    Bill 25:52

    And then after that, we don’t expect to see too much more recovery. I think that’s very limiting. And slow and steady wins the race type of recovery, I think is the best one. And you can’t recover from stroke in the first three months, you just can’t it’s not possible, you can achieve a lot.

    Bill 26:11

    But I think that achievement of those things happens. Kind of regardless of how much effort you put in it, because it’s it’s kind of the window that it’s like the golden window of opportunity to get a lot back. And I think it just happens anyway. It’s really what I find stroke survivors struggling with is, you know, being 12 months and 18 months down the track when they are left alone.

    Bill 26:37

    And they want to recover, they use the fine motor movement of one of their arms or their leg or whatever, that’s when there’s no support. And I think that’s when it’s needed the most, because now those people are back in life most days in every day. And if they can’t get that back, they can’t experience the fullest version of themselves.

    Bill 26:58

    So I feel like, it’s great that recovery is bombarded at the beginning. But it starts and stops too abruptly, in my opinion needs to just smoothly and effortlessly kind of roll on. And if that means that the hours that you’re getting saved, in the first few months, you’re getting four or five hours a week, if those hours dropped to one or two hours a week, and then they were able to extend further along down the path.

    Bill 27:30

    That’s better, because in my opinion, like the brain still needs regular feedback of what to do to get better down the track that’s kind of my opinion. So I think it’s you know, it’s too abrupt, it’s too much. And then it’s too little. And that’s where the gap is. That’s what stroke survivors talk about often when I talk about there’s a lot of gaps when you leave hospital or therapy. So that’s interesting.

    Hilary 28:00

    It’s like left hanging, just like wondering what to do next afterwards.

    Bill 28:04

    Yeah, and there’s not a lot of information, there’s no information at all. That’s what I was struggling with, I was struggling with getting information, I was struggling to understand what part of my brain was impacted, because nobody told me what it was and what it did and what it meant.

    Bill 28:21

    And I didn’t think about looking it up, to be honest. But I’ve got curious about that later on. But, that’s the thing, they’re the gaps that I’m trying to fill with these interviews and the podcasts so that somewhere, somebody might get lucky and find that and find an episode that’s useful to them at the time, right? So you never know, things change.

    The Brain Is Changing – Hilary Helt


    Hilary 28:48
    Yeah, definitely. I mean, and you’re 100% right about that it doesn’t happen in recovery doesn’t happen in just three months. It’s not, it’s not like when you stop, you know, PT or OT, that you’re done that you’re just like, okay, cool, like that, my brain is 100% back to normal, or my brain is just going to be whatever it is for that day, your brain is healing.

    Hilary 29:09

    I mean, I haven’t had a stroke, but my brain is changing every single day like that is how our brains are your neurons are either rebuilding or they’re breaking down, or your brain is changing every day.

    Hilary 29:19

    And it doesn’t matter if you’re in you know, therapy or not. And especially after a stroke when your brain is rebuilding and is, you know, figuring out how to make those neural connections again, to get basic body function back. You know, it doesn’t stop at that three month mark.

    Hilary 29:37

    So I think you nailed it on the head there. You know, it needs to be longer than three months. So we’re in different countries. I’m in the United States and you’re in Australia and our healthcare systems are a little bit different.

    Hilary 29:51

    But I know that in the United States, you know, they’re just gonna want money but also Insurance companies will only pay for some much. And so that’s kind of I think, where you’re really going to bump into the troubles of getting that. More therapy that’s definitely needed to move forward. You know?

    Bill 30:15

    I think it’s a conversation about you can still do therapy without paying for it, you know, if you just watch YouTube videos about therapy, exercises, all that kind of stuff you could still do, and that’s the thing, right? If you’re motivated enough, and funds are an issue?

    Bill 30:34

    Basically, my message is recovery doesn’t stop when they say it stopped, or when they say it’s done, when they say it’s over. It continues, It’s ongoing. And emotional recovery is also important. And so is physical recovery. And so is the mental recovery. Right? So there’s three pronged approach and perhaps more, but if you’ve left therapy, and all they focused on was getting you walking, and moving, and that type of thing, and they didn’t deal with the emotional impact than that, and that’s a problem for you.

    Bill 31:07

    Well, then that’s something that you need to also take care of. And so is the mental recovery, you know, counseling, all that type of stuff. And I understand that counseling might be a bit harder to obtain, because there’s a cost associated with that. But nonetheless, all these things need to be continuously sought after. And perhaps you need to get curious about what’s available for free, online, if for free is your thing.

    Hilary 31:30

    There’s alot available for free online, too. And, I mean, and I echo that 100%, I mean, you do need to have that little bit of a, you know, a starter in yourself to that motivation to get that information in that. Go in yourself. But there is so much information out there, a lot of it is really, really helpful, you know, stick to reliable sources, but you know, it’s all out there and a lot of it is free.

    Hilary 31:33

    And in each prong, too, right? So not just the, the mental but the physical, like different activities you can do to move on. So say you’ve, you’ve gained some mobility back and you’re ready for the next step. Well, that information is out there, you know, and then say you’re really struggling emotionally in recovery.

    Hilary 32:16

    There is a lot of resources out there too, that are free, or, you know, some reasonable cost, you know, it costs nothing to journal. Yeah, it’s nothing to you know, reflect go down, go down to the river or the lake or, or the, the woods or whatever, and just sit and just god man, why do I feel this way?

    Hilary 32:35

    And just kind of turn in, you know, that doesn’t cost anything. But, you know, it is tough, like, that’s easier said than done. And I do not mean to minimize that. But yeah, I just want to echo, you know, what you’re saying that, you know, all of that stuff is really important, and that it’s really, really available. If you need it, you know, it’s there.

    Bill 32:54

    Yeah, I think so. What does the parietal lobe do?

    The Parietal Lobe

    Hilary 32:59

    So the Prado lobe is really interesting. I like the parietal lobe, because it has to do with touch, and the inch, so that we have these different neurons that like the very tips of our skin, that senses touch, and there, they just have like, these really crazy names. And like, there’s all these weird shapes, like one is kind of like a funny little oval, and it just, like gets smaller and smaller and smaller.

    Hilary 33:22

    Like there’s different neurons that like sense, pressure, and there’s different neurons that sense pain. And that all goes to your parietal lobe when you’re sensing all of that, and then there’s others that sense temperature. So like, if you’re going to, you know, touch that hot stove, right? That’s always the example why does everyone always use that example?

    Bill 33:42

    Because it’s so true, because it has that issue.

    Hilary 33:46

    Yeah. And then your neurons are gone to that parietal lobe, don’t touch that, that’s hot. And then so your prior to lobe is also going to interpret language and words, you know, so the parietal lobe and the temporal lobe kind of work together, you know, language wise.

    Hilary 34:02

    And then your product lobe has to do with your, your vision as well. So like, you know, if you have an A stroke in your product lobe, your vision may be affected, which is really kind of strange. That’s, that’s a hard one.

    Hilary 34:16

    I didn’t see any patients in my clinic with any vision problems after a stroke. But I would be interested to kind of, you know, hear how a stroke has affected somebody, his vision would be, I mean, that’s gonna be a hard one, right?

    Bill 34:30

    Yeah, I interviewed on the podcast, I interviewed a stroke survivor who had some serious vision issues. One of them was Maggie Whittum, and it was Episode 47. And the episode is called The Great Now What?

    Bill 34:45

    And Maggie’s vision is she has what how do I describe it like vibrating eyes?

    Hilary 34:55

    Like rapid eye movement?

    Bill 34:58

    Yeah, they just move up and down. All the time, and it creates blurry vision, it creates double vision. And then she sees, two of everything but very close together. So it’s kind of like a blurry version.

    Bill 35:11

    So that’s Maggie, Maggie is amazing. She’s in the process of writing and putting together a documentary about her experience. So that’s going to be a really cool documentary when it’s ready. So that’s Episode 47. The Great Now What with Maggie Whittum.

    Bill 35:28

    And so that was quite a while ago, still very relevant, obviously. But then most recently, there was an episode with Gloria Morgan, who had a brainstem pons stroke, Episode 117. And Gloria has some vision issues as well. So that’s an interesting episode to listen to, as well.

    Bill 35:54

    And she has also experienced tinnitus, which is an issue with the ear or the ringing in the ear. And some people will can actually make it a little better, I think, with some people with without drinking caffeine, so decreasing the amount of caffeine decreases the impact of tinnitus, and also there are hearing aids that can get rid of the tinnitus.

    Bill 36:22

    So I have a client. I have a coaching client who has tinnitus, and recently discovered that there was a hearing aid that he could put in his ear and it puts off a frequency that basically makes it go away, helps the hearing and also.

    Hilary 36:39

    So it kind of cancels it out?

    Bill 36:40

    Cancels it out, and then it’s gone completely. So there’s a couple of ways to help sort that out and help overcome it and get curious about that. If you’re somebody who’s experiencing that right now, I couldn’t recommend that enough, it was really cool to hear that he found a solution for that because it was really bothering him.

    Bill 37:03

    So the the parietal lobe is, sounds like a part of my parietal lobe was impacted, because I have those sensory neuron issues. So hot on the left side is a bit harder to register. And then sensation on my skin is a little bit of an issue. I feel a burning sensation and tingling all the time.

    Hilary 37:27

    Yeah, that sense of touch that got a little wonky, you know those neural pathways got affected in your parietal lobe.

    Bill 37:34

    Yeah, sounds like they got mixed up or wired differently or interfered with or something like that. So that’s like that, and also my left side is colder than my right side all the time.

    Hilary 37:48

    Oh, my gosh, how strange. How do you deal with that?

    Bill 37:51

    Yeah, well, you put your jumper on and you take it off every three minutes.

    Hilary 37:56

    On and off, on and off.

    Bill 37:57

    That’s what it is. And the left side gets really cold and sometimes hard to warm up. While the right side si doing quite well. And I’ve previously perspired on half of my body and not the other half.

    Bill 38:14

    So perspiration on my right side, but not on my left side.

    Hilary 38:19

    Wow, that’s wild. I haven’t heard of that one.

    Bill 38:23

    Yeah, that’s pretty wild. So when that happened, there was a bit of a shock. And I kind of realized I was perspiring, but didn’t know exactly that it wasn’t happening on my left side, until I went to wipe my forehead and it felt quite dry on one side. And then on the other side.

    Hilary 38:42

    Wild. Oh, my goodness. That is so strange.

    Bill 38:47

    That is really bizarre.

    Hilary 38:48

    Probably was, you know, the most fun thing to realize, right?

    Bill 38:54

    Kind of gets a bit fun at some point. Like at some point there’s so much.

    Hilary 38:59

    You have a good sense of humor about things.

    Bill 39:01

    You have to because there’s so much that you’re dealing with. And then when that happens, like, Man, that is nuts. That is crazy, because you’ve never experienced that before.

    Bill 39:10

    And no one knows what the body’s capable of doing. So it is regulating temperature differently at the same time on both sides of my body. And I don’t know why not. I can’t describe it.

    Bill 39:23

    But it’s cooling part of my body down while the other part is cool enough. I mean, that’s pretty intelligent. Even though it’s messed up, it’s intelligent, right? It’s still doing an amazing job of keeping me alive and and running all the regular functions. It just does it in a different way.

    Bill 39:42

    And if both sides of my body felt like my left side, then it would be normal. I wouldn’t notice the difference. But they’re difference so the right side is quite normal as it’s always been. Yeah, and the left side is different. So one of them is not worse than the other, it’s just that they’re different. And that therefore they get really, really noticed.

    Bill 40:06

    And I’m comparing, I’m always comparing, and I can’t avoid comparing, because it’s that part of, Okay, I’m feeling cold on one side, I need to warm that side up. But I can’t warm it up on its own, I’m going out, over, over warm up the other side. And it’s just this constant communication and Battle of balancing it and managing it. So you can wrap your head around it. And if you let it get to you it can be annoying.

    Hilary 40:33

    Yeah, you can’t let it get to you. But it’s, I can say that it’s that would be hard. But I do love that you brought that up books. That’s a really, really great example that just kind of talk about like, how just absolutely fascinating how just deeply integrated nervous system is.

    Hilary 40:50

    So there are so many neural pathways doing so many different things that, you know, you’re you’re feeling different temperatures on each side of your body. So it’s not like there’s one neuron one neural pathway that’s doing like that one thing that’s like, Okay, keep it cool, but you know, it’s not, it’s not one, it’s, there’s billions of neural pathways in our body.

    Hilary 41:09

    And you know, if just a few are a little wonky or messed up because of, you know, your stroke, then it’s going to have, an effect of, you know, one side of your body being one temperature on the other side of your body being another temperature because that one neuropathways, healthy and fine and was not affected, and the other is injured.

    Hilary 41:29

    So I think that that’s a really great example, to explain just how absolutely integrated our neural pathways are, how integrated our nervous system is into our body. It’s, it’s in every micro scopic, tiny speck of our bodies, it’s everywhere, you know, it’s controlling everything.

    Bill 41:49

    Yeah, and I imagine that the parietal lobe, my parietal lobe, therefore, in that area, it’s probably closer to the cerebellum, where it’s impacted. Because my, my bleed was near the cerebellum. So I imagined that and it was four centimeters in from my right ear, that the bleed happened, which is about two inches, I imagined something like that.

    Bill 42:12

    So the other side of the parietal lobe hasn’t been affected. So perhaps the fact that it’s on my left side of my head, the unaffected part of my head, therefore, it’s just running its regular neural pathways for the right side of my body.

    The Occipital Lobe

    Bill 42:28

    So the left side of my head is not affected, the right side of my body is not affected. And it’s just, you gotta remember that switch. The regular routine, right? So anyway, that’s interesting. Yeah, so what does the occipital lobe do?

    Hilary 42:46

    So the occipital lobe is straight up, just vision. That’s what it takes care of, you know, just seeing color and light, and, you know, understanding movement and all that stuff. So that is vision, very simple for easy. The occipital lobe has the easy job. I mean, that’s saying that with a lot of just but yeah.

    Bill 43:06

    Yeah. So, if the stroke has impacted vision, and that’s happened elsewhere? I imagine there are more parts of the brain that are supportive or running, you know, pathways towards vision or something like that, if it’s not all just sort of happening there, because the occipital lobes in the back of the head and how does it like, go through all the parts as well?

    Hilary 43:38

    It’s kind of funny, right? It’s a strange way to think about it. So like, if you were to look like if you were to pull up an image of the brain and like look at like the, the nerves that go to your eyes, they’re kind of located a little bit farther back, they’re not like right here at the front of the brain that go like right to the eyes, they’re located kind of further back into the brain.

    Hilary 44:01

    So it’s not as much of a way as to travel if you think about it that way, because the very, they’re like in the far back and so like, they go straight into your eyes to say, anyway, I’m not very good at explaining that without like, giving like a picture.

    Hilary 44:16

    But pictures are very, very telling if you were to just Google like you know your nerves, nerves of the brain or nerves of the eyes, you would find it very easily and you would see what I’m talking about. It’s the occipital nerve. And it’s located a little bit further back in your brain.

    Hilary 44:32

    And if you look at the brain kind of as if you were to take it straight out of your head like this, and then look at it like that kind of like turn it down and look at it like that. You’d see the optic nerves right there a little bit further in the back of the brain and they and then they got their travel fourth into your eyes. Okay, you’re staying there long. They’re like a kind of like the longer too long pathways to the eyes.

    Bill 44:56

    So they can be there for impacted by him. Reach in a different part of the brain, or a blood loss supply in a different part of the brain could be peripheral damage of a different part of the brain, right?

    Hilary 45:12

    Yeah, so like, that’s what’s kind of tough about strokes, right is like say, like you have, you know, a blood vessel in the brain, you know, like in your parietal lobe that burst, but then the blood that that is like, you know, in your brain, and is kind of like just kind of trying to go, it has to go somewhere, right?

    Hilary 45:29

    So it could, you know, be pressing on to the other parts of the brain, and then affect those parts of the brain, even though, you know, they’re, they’re still getting blood supply from a different artery in your brain. But it’s affected because, you know, they’re getting that pressure from that, that blood pressing in, right.

    Hilary 45:49

    So strokes are just complicated in that way, right? Like, maybe you didn’t have your stroke there, but the blood traveled there and affected it in that way. So it’s hard strokes are hard, they’re, they’re tough, you know, and how you heal because that is a different injury.

    Hilary 46:07

    Because that part of the brain actually did continue to get blood supply, but it was just kind of squished, and it may heal better, or it may heal differently, because it actually still got that that oxygen from the blood supply so it’s tricky.

    Bill 46:22

    So that could be possibilities of peripheral damage, even though the occipital lobe is quite healthy and doing well. It’s just the other part of the brain that’s impacted. Therefore, that nerve coming from that occipital lobe to the eyes, is what’s impacted but down the road, it’s not impacted at the source.

    The Cerebellum

    Bill 46:44

    Cool. All right, we are learning a lot. And this is probably one of those episodes that we’re going to need to listen back to a couple of times, I would say, what does the cerebellum do? And what’s its role?

    Hilary 46:59

    So the cerebellum is kind of like your, your baby brain, right? And, and it has to do with a lot really, the cerebellum is responsible for the maintenance of posture and balance. And then the coordination of voluntary movements, motor learning and cognitive functions.

    Hilary 47:20

    And we’re talking about things like like language again, right? Like you would think that like things are just kind of covered in the other parts of the brain. But the cerebellum has a part of language as well. So the cerebellum is kind of considered the part of the brain that like, Is Your Life source, right? But just because it is. It’s doing so much sound and I kind of leave it light like that.

    Bill 47:47

    Yeah. Okay. So the stroke, the bleed that I experienced, was near the cerebellum, I’m not sure which lobe it was near. So I’d say it was probably near the temporal lobe as well. Kind of makes sense. When I look at the brain 4cm in from the year.

    Hilary 48:05

    It’s like right they’re next to each other?

    Bill 48:06

    Yeah. Somewhere there. So definitely fine motor movement was an issue for me, I had to learn how to use my arm again and get it to come to my mouth so that I could put food in my mouth. Posture was a bit of an issue because I had to learn how to use to how to walk again and use my left leg again, and how to stand correctly how to run.

    Bill 48:30

    Not that I run marathons, I just run, for example, to get across the road if I need to that type of running. And you mentioned cognitive functions, I was really cognitively affected. Especially after the second bleed, I didn’t know who I didn’t know my name at one point and who my wife was.

    Bill 48:52

    I was unable to type an email would sit down and think that I’m typing an email. And it might have taken me a whole day to write three or four lines. And I wasn’t aware of the amount of time that I’d spent sitting there looking at the screen trying to put that email together.

    Bill 49:11

    I laugh now but it wasn’t funny at the time. You know, it was tough at the time.

    Hilary 49:15

    I’m sure, it must be so frustrating at the time.

    Bill 49:17

    Yeah, so it definitely makes the most sense. It was the one for me that was impacted the most. And yeah, cognitively I was, I’d start sentences and then not being able to finish them. And even today, sometimes I get stuck on certain words, like Where, where, where and where.

    Bill 49:41

    I don’t know which one goes where and when. So I know but I have to think about that I’m using the right one. And that wasn’t previously something that I did, I would quite easily find the correct way to use We are all, you know, where are you? Or where are you going? That type of thing.

    Hilary 50:05

    How was your balance afterwards. So the cerebellum is so you know, integral to balance, how is your balance?

    Bill 50:11

    Yeah balance is still a little bit off because of the sensation that I have on my left foot. And when I’m tired, so if I’m tired, I’ll find myself walking into doorways a little bit, you know, misjudging the distance between me and the doorframe.

    Hilary 50:29

    And that explains, you know, the knocking the glasses off of the table, too. That’s, you know, in your that’s controlled in your cerebellum as well. That’s all back there.

    Bill 50:39

    If I had bad run, I might knock over every second glass at the table. It’s not that bad. But it was at one point, we were going to lunch with some friends regularly at one point, and I was doing it almost every second time we were there.

    Bill 50:55

    And at some point, they just kind of got used to it. Oh Bill’s dropped something again.

    Hilary 50:59

    Like he’s made another mess. Okay, let’s just mop it up.

    Bill 51:02

    Pretty much, pretty much the fine motor movement again, you know, that makes sense. Because perhaps that I couldn’t grasp the glass correctly.

    Hilary 51:14

    Yeah. So that let’s differentiate the two, right. So for our listeners, unfamiliar with the difference between like your gross motor movements and your fine motor movements, your gross motor movements are just like moving a limb. And then your fine motor movements are like the very intricate movements that like your fingers.

    Hilary 51:31

    And your, you know, your feet to use to like, be able to grab that glass are able to just be able to pinch something between your two fingers, or just like move something with one fingers like that. Those are your fine motor movements.

    Bill 51:44

    So yeah, that’s the cerebellum. And then there’s the brainstem, right? So is the brainstem part of the brain or not?

    Hilary 51:53

    It’s part of the brain, but it’s like, it’s really kind of leading right into that spinal cord. So it’s just like the very tippy top of the spinal cord. But yeah, the brainstem is just kind of like that, you know, kind of, like I said, that, like, four way traffic stop, you know, it’s kind of like where it’s like really starting to direct that message.

    Hilary 52:09

    If it’s going to go to that, you know, first cervical nerve, or it’s going to go like thoracic mirror, you know, into like, telling your lungs to do something or, you know, going down to like your, you know, your abdominal nerves and stuff like that, you know, telling your guts to like, Hey, move that food down into the large intestine.

    Hilary 52:28

    So we can, you know, continue digesting or if it’s going to go down to a motor neuron and your leg cuz you need to walk forward, or what have you, you know, that’s kind of where that brainstem, the brainstem is at the start of it.

    Bill 52:44

    Okay, so it’s the brainstem is kind of the gateway, the bridge between the spinal cord and the brain. And it doesn’t have does it have any is it a blood flow thing? It’s a, what does it do? Does it have blood flow through a like a vein? Or is it just literally nerves? a pipe of nerves?

    Hilary 53:08

    You know, that I’m not super familiar with? I’m not sure. I know that every part of our body has, you know, blood supply. I am not sure about that exact answer.

    Bill 53:23

    Okay. That’s cool. So if I understand correctly, is the brain stem has also the pons and the medulla and a couple of other things. Are they part of the brain? Are they also part of the brainstem?

    Hilary 53:40

    There are the brainstem and there is the brainstem is kind of considered its own thing, really, but it is the beginning of the spinal cord.

    Bill 53:48

    Okay. Well, I think we’ve covered a lot. And I think this is a really full on and complex.

    Hilary 53:55

    Oh, and there’s so much you could have an entire podcast on the brain. The brain is exceptionally complex. And there’s a lot to it. It’s fascinating. It’s really great stuff. But yeah, we covered a lot.

    Bill 54:07

    Yeah. Fabulous. Thank you so much. I really appreciate it. So the anatomy nerd podcast is fairly new. Tell me a little bit about the type of people that you’ve interviewed so far. Yours truly.

    Hilary 54:18

    I know. You weren’t episode number five. Number four, number five. But yeah, it was really wonderful to have you on the podcast because, you know, the brain is part of our anatomy.

    Hilary 54:30

    And it’s interesting to cover the human body when it’s, you know, functioning well and then also when it’s not doing so great. So your episode was really wonderful. And also, you know, really helpful to just get stroke information out there.

    Hilary 54:45

    But then I’ve also interviewed some anatomy illustrators, that was a really, really fun episode. I’m just kind of talking to somebody who’s in the field about you know, when you look at these textbooks and websites and information, people pamphlets that your doctor has given you.

    Hilary 55:01

    All of those pictures, somebody drew them, somebody created them. So I interviewed a gal who is a medical Illustrator, she kind of, you know, described her path and her educational background and all that stuff, and what it all entailed to become a medical illustrator and that was really amazing.

    Hilary 55:18

    The episode that I had a lot of fun with was interviewing Frank Metter’s daughter. So for those of you who don’t know, Frank Metter was a surgeon and medical illustrator again, and he composed the anatomy Atlas, that pretty much the majority of medical students use to learn anatomy and physiology and all that stuff.

    Hilary 55:44

    I know, I used it to learn anatomy in college, and I had the pleasure of interviewing his daughter, and she wrote a book about Frank Metter, and told his story told about, you know, his, career at Cedars Sinai, and all of his medical illustrations and all of that, and that was really amazing. I really enjoyed my conversation with her.

    Bill 56:10

    And is his work still relevant? Was a really well done that it’s still current?

    Hilary 56:16

    Yes, yeah. 100%. Yeah, it’s still used today. Yeah, it’s pretty great. And they’re really beautiful images. I think that one of the things that I just loved about Frank Metter is that, you know, it’s accurate. It’s, and it’s still used today, because it you know, who is only only drawing these, illustrations, you know, maybe a couple of decades ago, not, it’s not like he was doing it, like, hundreds of years ago.

    Hilary 56:44

    And he didn’t know anything about the body, like, no, they’re definitely recent enough that they’re accurate. But he just had this really amazing way of putting, you know, that human emotion and that human personality that the human element into the illustrations, and it goes a long way.

    Hilary 57:01

    You know, it kind of teaches that student, it reminds them that, hey, you know, your patient, whatever that may be in whatever medical field, you’re working in, that you’re working with people, you know, not just a medical illness or what have whatever you’re dealing with.

    Hilary 57:19

    You’re dealing with a person and remember that and that, you know, everyone deserves respect and all of that. So he conveyed that in every single one of his illustrations. And it’s amazing that he was able to do that. It’s pretty cool.

    Bill 57:32

    Yeah, sounds interesting. So where can people find the podcast if they want to, to reach out and connect?

    Hilary 57:39

    On every podcast platform and app so you name it. It’s in Apple, it’s in Google. It’s on Spotify. It’s on Stitcher, it’s on all those things.

    Bill 57:53

    On the socials? Where will they find you on the social medias?

    Hilary 57:57

    I am on Instagram, mostly. I’m mostly active on Instagram.

    Bill 58:00

    Fabulous. Well, Hilary Helt thank you so much for being on the podcast and explaining to us a little bit about the brain are really appreciate it.

    Hilary 58:10

    Thank you so much for having me, Bill. It was really, really wonderful to get to talk to you and nerd out about the brain a little bit.

    Bill 58:16

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

    Bill 58:28

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

    Bill 58:46

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

    Bill 59:03

    And there is a better way to navigate your recovery and build a fulfilling future life that you love. I’ve created an inclusive supportive and accessible membership called recovery after stroke. This is an all in one support and resource program and it is designed to help you take your health into your own hands.

    Bill 59:25

    This is your guidebook through every step in your journey from reducing fatigue, to strengthening your brain health to overcoming anxiety and more. To find out more and to join the community just head to recoveryafterstroke.com See you on the next episode.

    Intro 59:45

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

    Intro 1:00:02

    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 1:00:25

    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 1:00:40

    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 1:00:53

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    Intro 1:01:17

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    The post Anatomy Of The Brain – Hilary Helt appeared first on Recovery After Stroke.

    1 hr 2 min
  • A Night For Aphasia – Olivia O’Hare

    Held annually, a night for aphasia is the brainchild of speech pathologist Olivia O’Hare. The event is designed to educate Australia about aphasia.

    Socials:

    https://www.facebook.com/anightforaphasia/
    https://www.instagram.com/anightforaphasia/
    https://www.nowweretalkingspeech.com.au/

    Highlights:

    02:28 Introduction

    03:14 A Night For Aphasia
    12:24 Different Types Of Aphasia
    18:42 Giving The Right Motivation
    22:56 Family Involvement
    28:28 Procedural Memory
    33:53 Starting A Night For Aphasia
    37:31 How To Interact With People With Aphasia
    42:22 Invisible Disability
    48:13 A Night For Aphasia 2021

    Transcription:

    Olivia 0:00

    I think it’s really important to also acknowledge that it’s not just the client that you’re working with, it’s very much the support network. They’re just as important because they’re obviously going through it all as well. So to be able to assist the client, but also work with a family in an end-user really collaborative approach, I think, yeah, it makes all the difference.

    Bill 0:23

    How do you equip the family? Are they usually involved in the sessions? Do the sessions all happen in clinic? Or do that happen at home? How does that work?

    Olivia 0:31

    With the clients that I have, most of them come to the clinic, and it’s with their partners. So as much as I can do it in an hour session really the rest of the time, every minute of every day, they’re with their carer. So I want essentially, to be able to train them to be a mini-speech pathologists that’s specific to the client because they’re gonna do most of the work. I’m just teaching them how to do it.

    Intro 1:02

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

    Bill 1:14

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

    Bill 1:26

    I’m your host three times stroke survivor Bill Gasiamis. After my own life was turned upside down, and I went from being an active father to being stuck in hospital. I knew if I wanted to get back to the life I loved before, my recovery was up to me after years of researching and discovering or learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible.

    Bill 1:51

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

    Bill 2:11

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

    Introduction


    Bill 2:28
    This is Episode 150. And my guest today is Olivia O’hare, a speech pathologist who is also the founder of the annual event A Night For Aphasia. Olivia O’hare, welcome to the podcast.

    Olivia 2:42

    Thank you. Thanks for having me.

    Bill 2:43

    My pleasure. Thank you for doing the work that you do. And I’m gonna let you explain what that is. But you’re the kind of you’re my favorite kind of person because you guys, like many other people around the planet, you know, and Australia and our communities help out other stroke survivors, you look for ways to support stroke survivors from the different ailments that they have. So tell me a little bit about the kind of work that you do?

    A Night For Aphasia


    Olivia 3:14
    Of course, it’s a very nice compliment. Thank you. So we have only just started putting together an awareness campaign called and that for aphasia. And so I suppose there be lots of questions coming through about specifics.

    Olivia 3:29

    But essentially, it is an event and night that we raise awareness for the condition aphasia and help the wider community as well as allied health professionals, and general public students, whoever wants to come along, learn a little bit more about what aphasia is.

    Bill 3:49

    So how did you get an interest in that space, though?

    Olivia 3:53

    Yeah, so it was in my final year of speech pathology. As a student, I was working at a hospital rehabilitation center, and I was given this client on very last minute, which I think is just very, very ironic, fantastic way that it all happened.

    Olivia 4:14

    And I’m really, really thankful for this last-minute patient that I got, and there was very limited information provided. So it was really a matter of sort of jumping in and getting to know this patient and their partner. And we were going through some initial rapport and trying to get to know each other a little bit better.

    Olivia 4:38

    And the file that I was reading with the presentation that I was given just something just wasn’t brash. So going down the track and sort of doing a little bit of research and a bit of investigation, we actually discovered that this person does have aphasia and wasn’t accurately diagnosed.

    Olivia 4:55

    And I’m sure you’re well aware of the whole element of spontaneous recovery. So that real initial curve where post stroke, you do see some really fantastic gains. And this poor patient wasn’t able to have or make those gains because their diagnoses wasn’t necessarily accurate.

    Olivia 5:17

    And it’s no fault of any of the doctors or speech pathologists, I think it’s purely just to do with the awareness around what aphasia is. So that didn’t sit well with me. And that’s essentially how ANFA wass born.

    Bill 5:30

    Wow. You know, you talk about it, it was nobody’s fault. And I kind of understand that there’s a possibility for people to fall in between cracks. And there’s so many reasons why. But did that person have a traumatic brain injury? Do they have a stroke? How did they get to be in front of you?

    Olivia 5:51

    Yeah, of course. Great, great question. So they did have quite a large stroke. And they’ve gone through the process of this particular hospital, obviously, in acute care, and then moved to inpatient rehab, and we were then a part of my role was part of ex-patient may have so they’d come in, and we’d work with them.

    Olivia 6:14

    And they had quite significant impairments. So this particular patient was completely nonverbal, and had a paralysis in his left side. So had already done a lot of work. And I’m not sure I’ll kind of explain it, but they, this particular client must be separating a lot.

    Olivia 6:37

    So a lot of repetition of certain words and sounds that made them they were under the impression that they were producing language and sentences that were making sense, but it was the same, same words, the same sounds being repeated. So really difficult, I suppose in jumping in, obviously, halfway through.

    Olivia 6:58

    So as a previous qualified speech pathologist, working with them, and sort of coming in as a student with no experience of what aphasia is, and really trying to figure out where they’re at and how best you can facilitate their recovery and work with them to make some gains.

    Bill 7:15

    How old? Were you at the time?

    Olivia 7:20

    25.

    Bill 7:23

    And what were you are just like a problem solver. I know how I’m going to fix this, I’m going to help. what’s the what’s the, the mindset of somebody who’s in that role? Because I’m a bit of a problem solver and I go after problems.

    Bill 7:38

    And I figure if we follow if we go for the solutions and focus on what the solutions are, how we can overcome those problems. And spend more time there, we’re more likely to get to some kind of an outcome that’s better than where we started. Right? What kind of curious mind did you have?

    Olivia 7:55

    Yeah, great question. So I’m definitely considered a bit of a problem solver. I think it was also really fortunate, obviously, this patient had been through the system, literally from from day doc to, I think was almost seven months post-stroke from when we met.

    Olivia 8:13

    So fortunate to sort of have that holistic understanding and to see him at that point. And not so much from where he started along the journey. So I think that definitely helped.

    Olivia 8:26

    But yeah, it just didn’t seem like the facts sort of matched. So fortunately, being a student, all that research is quite in the forefront and yeah, fresh in your mind. So it kind of it just fell into place. Which was really lucky.

    Bill 8:45

    I had a really interesting experience. I was presenting to the third year occupational therapy students, probably about 2015 I think it was March 2015. And I was presenting about my story, they bring in a real live stroke survivor, and I talk about things that are related to stroke to give the students a understanding of what it’s like to experience a stroke and then go through the rehabilitation phase.

    Bill 9:12

    And then what was done well and what may have been missed, and just to give the students an insight into what a stroke survivor’s experience is. It was brilliant for me to be there. And it was really brilliant for them to have me there. Right was great all around.

    Bill 9:30

    And what was interesting is that out of nowhere, one of the students at the end raises her hand and says, do you have left side numbness or left side what does she say left side temperature difference? Actually something like that.

    Bill 9:47

    And she was sitting I would say a good 15 rows behind where I was like, in front of me but like 15 rows back and I said to her what makes you say that? She goes, cuz I noticed in the different color of the skin tone on your hands.

    Bill 10:09

    And I said to her, well, my gosh, that’s an amazing thing to notice. Because yes, my left hand is a lot colder than my right hand. So it probably appears more pale, as opposed to the the other hand, and that’s because it’s always colder.

    Bill 10:24

    And I’m not sure whether it’s blood flow or whatever, but yes, it is. And I attend to her lecture her and this person, you know, deserves top marks. And it was kind of that thing, it was fresh, there must have been something that triggered that for her that was recent.

    Olivia 10:47

    And I think it’s important with aphasia, too. I mean, there’s so many different presentations. And I think that’s an element of the lack of awareness can be disguised as many other conditions or many other communication disorders. So I think it’s a matter of sort of taking that step back and looking at it holistically and being like, okay, hang on a second. There’s, this which would fit into this category, but there’s actually X Z that would fit into this. And it was yeah, just sort of putting all the dots together.

    Bill 11:16

    Yeah. So what are the presentations of aphasia? What are some of the common ones that people miss?

    Intro 11:21

    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 11:38

    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.

    Intro 11:51

    If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called the seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke.

    Intro 12:09

    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.

    Different Types Of Aphasia – Olivia O’Hare

    Olivia 12:24

    So there’s a lot of different types of aphasia, and it depends on what part of the brain has been affected. And I’m still learning about aphasia, and I’m trying to raise awareness.

    Olivia 12:35

    So there’s still a lot of work that’s being done to understand aphasia, and I think, not only understand that, but but to be able to consolidate it to a point where we can teach the general public or teach someone that might not know as much about the anatomy.

    Olivia 12:53

    I’ve actually written the different ones down. So there’s Anomic Aphasia, which is fluent. So the the output, there’s a lot of verbal output, but a lot of those key words are lost. So it’s a bit of word finding like oh, can you go get that thing, you know, the thing over there, that’s, that’s sort of, there’s lots of language coming out, but it’s not as specific as we might like.

    Olivia 13:18

    And there’s Wernicke’s aphasia, which is where the Wernicke’s part of the brain, that’s obviously where the damage has occurred, which typically presents as low receptive. So the understanding and that comprehension, you can see a bit of an impact there and doesn’t mean that intellect isn’t intact.

    Olivia 13:39

    And I think that’s the most important thing with aphasia is that all people that have an intellect is intact, it’s just their difficulty, to perhaps demonstrate that intellect in whatever way. So there’s also mixed in nonfluent aphasia, which can come across as quite effortful speech.

    Olivia 13:59

    And it’s a bit of a mix of Wernicke’s and Broca’s, which is the next one. Broca’s is reduced expressive language. So we call that nonfluent aphasia. So very, very limited output. And this is the presentation that my patient had. And then there’s Global, which is the most severe, and that is essentially all of the above in terms of presentation. And that’s obviously really, really, life changing really difficult.

    Bill 14:30

    Yeah, in these levels of aphasia, different types of presentations, is the person able to get a pen and paper and for example, complete the sentence with that missing word there instead of trying to say it would that missing word be there or not?

    Olivia 14:48

    Depends on the type of aphasia. So, for I think it’s, yeah, I’m still getting my head around it for Wernicke’s, and Anomic aphasia, I do believe that there is a greater ability to be able to write expressively use your expressive language through written.

    Olivia 15:11

    There are also different levels of that written expression. So it might be more like an elementary level that they can sort of get back up to, compared to obviously, where they might have been pre-stroke, or pre-traumatic brain injury.

    Bill 15:27

    So in stroke recovery, the most overused word is neuroplasticity, in that it has this great has a connotation of like this amazing thing that’s gonna happen, you know, I just rewire everything and everything will come back and it’ll be fine. And I understand how we got to that point, because a lot of it is definitely possible to rewire.

    Bill 15:50

    For example, my leg rewired its ability to walk, even though it has motor sensory neuron issues where it doesn’t exactly know how to send information to the brain that it’s on the ground, just like my other foot is, it sends that information across slightly differently.

    Bill 16:06

    But nonetheless, that’s enough information to have created a new neural pathway helped me walk and appear as if there’s nothing wrong with me or my brain or my body.

    Bill 16:17

    So in aphasia is neuroplasticity something that can be harnessed in that dramatic inability to express can we retrain somebody to learn how to use words again and find ways to make sentences again?

    Olivia 16:35

    Absolutely, yeah. And whether that in terms of the full extent, so looking at potentially global aphasia, where that’s the most severe? And whether there’s research or not, if that can be done? My belief is absolutely, there’s always a way.

    Olivia 16:51

    And I think hope is the most powerful out of everything, in terms of neuroplasticity, but yeah, I do believe that. Yeah, we I mean, we’ve, we’ve had many clients that have worked really hard and gotten back to least some sort of functional language from them.

    Bill 17:11

    So that’s controversial, because doctors might say, well, there’s no research to back that up. And if there’s no research to back that up, you know, there’s some anecdotal evidence but what can really go by the anecdotal evidence, and I feel like roof stroke recovery is all about actually about anecdotal evidence, it’s actually got nothing to do with the research.

    Bill 17:29

    Although the research is good to put in a book and to tell somebody you know, with a, with a really massive head, brain situation, you know, where they overthink is and then perhaps very cognitively intelligent, you know, from a book perspective, if you talk to stroke survivors, like I have, of you know, there’s probably almost 150 podcast episodes now.

    Bill 17:55

    The anecdotal evidence seems to be really dramatic, in expressing the possibility that something is possible beyond what the doctors say, cuz believe it or not, many doctors still give the patients the “This is all you can expect.” Or we probably shouldn’t expect much more from that person right?

    Bill 18:18

    So when somebody comes to you, and they perhaps have been given the bad news, how do you bring them on board? Because I imagine that part of the therapy actually requires you to recruit that person into having belief and hope, just like you have belief in hope for them. How do you bring them on board when they’ve had the bad news?

    Giving The Right Motivation


    Olivia 18:42
    Yeah, great question. So I suppose I’ll start with talking about there is a bit of research around neuroplasticity and reconnecting or re-innovating neural networks typically takes around 400. This is what research has suggested around 400 repetitions to be able to begin that re-innovation.

    Olivia 19:05

    But up to 10, with play. So for me, my approach is very much through high motivation, high enjoyment. And I think that really brings it back to starting off by building rapport and making them feel comfortable and just saying, look, this is what we’re going to do, like we’re going to get there. It’s not a matter of if it’s a matter of when, let’s get going. And let’s have fun while we do it, and then the rest just falls into place.

    Bill 19:32

    Wow. Have you had results where the client was even surprised by what they were able to achieve, say in a couple of sessions, or even, you know, many years down the track. Did you had that type of experience where they’ve been able to say to you I can’t believe I’m talking or?

    Olivia 19:51

    Yeah, so I actually had a client that has been told by multiple allied health professionals Look, this is probably as good as you’re gonna get, which just is heartbreaking to hear and it should never be said even if it might be true, I think there’s always hope and hope is the strongest, the most important part of recovery for anybody.

    Olivia 20:18

    So I have had a client that’s walked through the doors, obviously very deflated being told, that yeah, they’re not going to get any better. And this is as good as it gets. And with aphasia, obviously, and essentially completely nonverbal. And we’ve now gotten to the point where they have improved so much very, very slow gains, but gains nonetheless.

    Olivia 20:43

    So they’ve got two or three words that they’re saying independently, a lot more repetition, in terms of being able to prompt them to get these words out, it’s limited now in terms of what I need to do. It’s a couple of things here and there.

    Olivia 20:57

    And you know, they’re getting there, and I can see it, we’re really, really close. We’re on the edge of a big breakthrough with language. So yeah, and I think that’s all down to just them enjoying it, and being told that they can do it. Human body is amazing.

    Bill 21:11

    It is amazing how does it change their life, because I imagine life’s normal, have a stroke, life’s not normal. There’s a lot of emotional challenges associated to not being able to communicate and express yourself and say the things that are important to you, especially with regards to your care.

    Bill 21:28

    So how have you found your clients respond to that? Like, what do they say about how it’s changed the life? And is it the really big things that changes their lifestyle? Or their life? Or is it a little minor things?

    Olivia 21:43

    Yeah, that’s a really good question. There’s definitely, I mean, just as a speech pathologist, I think we have the best job in the world. And that is very bias. But we, as humans exist to communicate.

    Olivia 21:58

    So even if that’s in a wave, or a hug, or a smile, and anything that we can do to help an individual who’s, you know, fallen so far in terms of their ability to communicate, baby steps, baby steps, it’s the same level of celebration and success. And it’s just, yeah, it’s the best job in the world, I feel really lucky.

    Bill 22:22

    Yeah, I think it’s a really cool job, too, because you’re actually giving people back something that they thought perhaps was lost. And they really use to help solidify their identity as a human being in the planet, and how they go about their community and how they go about their family and the roles that they play.

    Bill 22:41

    So, yeah, it’s very important work. And I can see why you get so excited about helping somebody and seeing them move beyond their condition, and then get better.

    Family Involvement – Olivia O’Hare

    Olivia 22:56

    I think it’s really important to also acknowledge that it’s not just the client that you’re working with, it’s very much the support network. They’re just as important because they’re obviously going through it all as well, in equal, if not sometimes greater implications in terms of their life functionally.

    Olivia 23:19

    So to be able to assist the client, but also work with the family in end-user really collaborative approach, I think, yeah, it makes all the difference.

    Bill 23:28

    Okay, interesting. And I agree with you, 100%. How do you include the family? Are they usually involved in decisions to decisions all happen in clinic? Or do they happen at home? How does that work?

    Olivia 23:39

    Yeah. So with the clients that I have, most of them come to the clinic, and it’s with their partners. So as much as I can do it in an hour session really the rest of the time, every minute of every day, they’re with their carer.

    Olivia 23:58

    So I want essentially, to be able to train them to be a mini-speech pathologist that’s specific to the client, because they’re, you know, they’re going to do most of the work. I’m just teaching them how to do it.

    Olivia 24:09

    And so yeah, I think it’s really important that families involved just to be able to get, you know, progress and move towards your goals as quickly as you can.

    Bill 24:18

    Is that a relief for the family members to come there and get some kind of pathway to supporting their loved one in the frustration or in the challenges when the difficulty of not being able to communicate because I coached them, carers of stroke survivors who are struggling with not knowing how to be a carer specific to that person’s condition that person’s deficits as a result of stroke.

    Bill 24:50

    Because they’ve never been involved in a medical setup anywhere, let alone specialize in stroke and they were just a regular person going about their life and now they’re a carer. So how do the carers respond when they’ve been given these tools?

    Olivia 25:07

    So, so well and so positively and I think, if anything, because obviously, there’s so many tools that you can implement, and you want to find something that works for the family, you don’t want to just say, hey, do this and then trying to adapt to something that just doesn’t work.

    Olivia 25:21

    So I think, in a lot of the initial sessions, it’s really about finding the right tool. And being unbiased individual within that partnership and saying, hey, talking to the client, saying, hey, do you think that this would be useful? You know, tell me yes or no, if they’re non verbal, or you know, thumbs up, thumbs down, nod, shake or verbalize yes or No, tell me, do you think that this would be useful?

    Olivia 25:45

    And they can tell you objectively, yes, this is going to be great or not, I’m not keen. And it doesn’t really impact the carer, they can kind of be motivated by yeah, what the clients wanting to do what the carrier can do, and then kind of working on that more collaboratively instead of it just being pushed upon them. So yeah, I think it’s a really nice, nice way to show the tools work on it together and then go from there.

    Bill 26:14

    Is there a lot of frustration and crying and emotions during a therapy session, or during a session where the clients in a clinic with their family, do you get to see people really sort of in pain or the opposite, really happy with what they’ve been able to achieve. Is there many expressions that you get to see?

    Olivia 26:37

    Yeah, yeah, every session. I also, it might just be the relationships that we’ve created, but I will often get phone calls from carers, just saying, hey, I need a chat. You know, family members might not understand or it’s someone that does understand where this particular client might be at.

    Olivia 26:58

    So certainly a little bit of counseling involved, and just having that really nice relationship. And they’re certainly some of the lows. But also, I get texts throughout the week being like he said this, or guess what just happened. So that’s always really exciting.

    Olivia 27:14

    And I love getting those messages. And so a lot of particular therapy approach that we use for aphasia is called melodic intonation therapy. So it’s through singing, and fluency. And with these particular clients that we work on, there’s always happy tears when they start to sing because, it just comes out.

    Olivia 27:36

    And, you know, obviously, they’re great songs with a kiss and eagles and Elvis, so it’s, you know, just fun as it is. But those emotions that they they feel just to be able to express in whatever way is Yeah, pretty incredible.

    Bill 27:52

    Can you tell me, this is a multimillion-dollar question. Can you tell me why is it possible for people to sing? And why is it not possible for them to just speak? This is amazing and brilliant.

    Bill 28:05

    And you see it in Alzheimer’s patients who are not physical and then they hear a lovely song, and they get up to the dance floor and they dance around like they used to 30 40 50 years ago?

    Bill 28:16

    What happens there? Is there a different pathway that gets activated? How does that work? And then the follow up question is how do we bridge that experience into talking?

    Procedural Memory

    Olivia 28:28

    Yeah, great question. So and a lot of that is to do with procedural memory. So people with aphasia, will be able to tell you the days of the week, Monday, Tuesday, Wednesday, counting, happy birthday, it’s all things that we sort of have learnt and repeated so much over time that it’s just there.

    Olivia 28:49

    And so you’ll find with songs as well, for these particular clients that we work with. There’s the melody to sort of carry it through, but also they’re obviously familiar songs. So they’ve got that long, long, long term memory.

    Olivia 29:05

    Obviously, we wonder how that would translate when it’s words like yes, no, and mine and yours and drink those particular things. But for example, when we sing Happy Birthday, that procedure comes through. And it doesn’t necessarily need a context it’s there.

    Olivia 29:23

    But with yes or no and words we’re starting to receive, we’ve got the word but we’re applying it to a context there’s a few more levels in terms of how we use that language and semantically, how it’s related to the context and the situation.

    Olivia 29:39

    So to answer your question of how to put them together, that’s kind of how melodic intonation therapy was introduced. So it’s using rhythm, but in speech, so that’s sort of an approach that we’re using but I think, repetition as well is going to be a big difference.

    Bill 30:00

    So getting them to sing a song that has the word Yes. In their or knowing there. Is that helping with the inability to say yes or no, individually or separately when they’re just speaking? Is that how you kind of train it?

    Olivia 30:20

    Not necessarily. Because again, it has to be to do with the semantics of the conversation. But it would be something like how are you, or banana. So you’re kind of carrying those syllables across.

    Olivia 30:41

    And you’d find that you’d practice that phrase, and then you’d ask the question, what’s the yellow that monkeys eat, and then they’d be able to go banana, which is just insane. I just still don’t fully understand how it works. But it does work, which isn’t that easy.

    Bill 30:56

    I know that there’s a lot more. I’m not sure what the word is study, feedback research, there’s a lot more information together on the field. And I know that it’s pretty difficult to answer my questions just like that in a really short amount of time. But I appreciate you trying.

    Bill 31:14

    You’re a little bit like me, you tend to get sucked in, right? So somebody sends you an SMS and you think, Oh, my God, like, my day is done. I’ve achieved amazing things. I feel really great about that, because somebody gave you feedback. And that’s what happened to me with the podcast.

    Bill 31:31

    It was never meant to be 150 episodes, you know, I never had any real plans for it. But then somebody on the other side of the planet says, I really enjoyed that episode. Thank you so much.

    Bill 31:40

    That’s just like me, I can’t believe that I found your podcast and then I’m like, Well, I don’t want to do it anymore those days, you know, it drives me nuts. And I’m frustrated, and I’m tired, and I’m having my own stroke recovery issues.

    Bill 31:53

    And I say ah, but that person sent me an SMS so far, you know, that’s not the reason to stop my problems. Not the reason to stop, I should keep going. Because there’s people around the planet.

    Olivia 32:06

    Making a difference.

    Bill 32:07

    Yeah, that want to hear the next episode. And it does make a difference to them. And therefore it makes a difference to me. And the cycle continues that I can’t jump out of the loop right? Do you relate to that?

    Olivia 32:19

    I do. Yes. Definitely. in many different ways, obviously, with ANFA being one of them. But even with clients, it’s more similar in the sense that I can’t say no, if it can help someone. So I have my own private practice.

    Olivia 32:42

    And I get calls, obviously, we’ve got a bit of a waiting list as much most speech pathologists do. But any client that calls and they’re two or younger, and they have a language delay, I just can’t say no, just because it’s that peak developmental times I’m like, Oh, okay, yeah, add them in, somehow I’ll figure out how to help whether it’s just doing a free consult with parents to educate them on how to do it.

    Olivia 33:07

    Or, yes, I’m pretty hopeless in that sense, as well, if you can help. I mean, why not? You’ve got the skill. Or in your case, you’ve got the experience and that really unique perspective and the skill to be able to run a podcast, so you can’t stop.

    Bill 33:22

    Yeah, I love it. So let’s talk about A Night For Aphasia. So not only can you not stop, you also needed to take it to the next level, right? So you’ve got a speech pathology, practice, you help people that you can’t really fit in. And then one day, you decided to create a evening to celebrate raise awareness I imagine to raise funds. Tell me a little bit about why you started A Night For Aphasia.

    Starting A Night For Aphasia


    Olivia 33:53
    Yeah, fantastic. So we had our first event in 2019. And that was the same year that I’ve met this client. So we actually pulled the event together in about six weeks, which was just awesome. And I think, yeah, it was perfect timing, because we had, we were kind of striking while the iron was hot and had some really great responses from peers and larger organizations.

    Olivia 34:19

    So we were lucky to be sponsored by the brain foundation and scope Australia. And they really helped us get things together quickly. And we had 120 guests 10 for the first one. And Professor Miranda Rose, who specializes in aphasia research was able to speak so she gave a really unique perspective.

    Olivia 34:19

    And we had a fabulous or a couple of fabulous guest speakers, one who was a person with aphasia, and she just brought the house down. her speech was just so unique and pure, and it was the perspective that everybody needed to hear. And I honestly think that she’s the one that started the questions of when’s the next event? What’s going to happen next sort of thing.

    Olivia 35:06

    So we’re really, really lucky to be able to do it again, obviously, not last year, because of COVID. But we’ve got an event which I believe you’re coming to, exciting, in July end of July this year. So essentially, the mission of the event is to raise awareness, if we can teach one person in the room, what aphasia looks like, or how they can interact with someone with aphasia to make their life easier in the community.

    Olivia 35:38

    We’ve succeeded, we are really fortunate to start we’re now starting to get a lot of guests that have aphasia come along, and the ones that are comfortable are going to have a name tag and say I have aphasia. Please come and chat come and learn about it from the ones that know the best.

    Olivia 35:56

    So yeah, it’s gonna be a really, really fantastic evening, we’ve got a panel of guest speakers. So we have a speech pathologist who’s jumping on a person with aphasia, and a carer of a person with aphasia. So through really unique perspectives, and some food and drinks flowing and some great raffles and giveaways. So, yeah, it’ll be really, really great night.

    Bill 36:23

    Sounds like I am really looking forward to it. I would love some tips on how to actually interact with people with aphasia, though, because although I’ve had a stroke, and although I went through, not aphasia, but some real cognitive, serious cognitive issues at one point.

    Bill 36:39

    I’ve never experienced aphasia, especially anything long term that impacted my ability to communicate. And I found myself fumbling and stumbling across those conversations. And I’ve found myself saying some things that come from a really naive place about people with aphasia, and it’s not my fault, it’s just that I’ve got no clue.

    Bill 37:06

    So if somebody comes across somebody with aphasia, or if a family member might be listening to this, who has recently had somebody who’s now experiencing aphasia, what are some of the tips that you could give them and me about how to be sensitive? I’m not sure if that’s the word to that person who has aphasia?

    How To Interact With People With Aphasia

    Olivia 37:31

    Yeah, absolutely. And so the things that I’ve learned from my experience so far, and I’m still learning, I think the most important thing is to take your time when you’re speaking, speak slowly. Be patient is definitely something that I’ve learned from many, many reports of people with aphasia over time is that it might take them a bit of time to put their message together, or work out what they need to say.

    Olivia 37:59

    So embrace those awkward silences and just wait, wait for them to say what they’d like to say. I think it’s really important to remember that their intellect is intact. So they might appear differently, or they might sound differently, but you certainly don’t need to dumb down your language to be able to interact with them.

    Olivia 38:21

    And yeah, just speak slowly and you know, be patient. It is difficult because of the different types of aphasia, there are different presentations or different difficulties that they might have. But yeah, just be mindful and patient and wait.

    Bill 38:45

    Yeah, sometimes it’s a little bit difficult for people to wait because there’s some information that you want, and you haven’t got time, and you want it now, and who knows what I don’t know what goes on.

    Bill 38:55

    But I think most people would sort of stumble across it unless I’m speaking from my own experience from just the bad habit of perhaps telling, you know, one of the kids in it, spit it out, or telling, you know, whomever friend of mine, you know, like, what do you want to be? I don’t know what you’re talking about.

    Bill 39:15

    I just find myself going back to those old habits of talking to people who are quite capable of talking but perhaps, you know, distracted or stuck in the conversation or whatever.

    Bill 39:26

    And us just sort of saying, you know, tongue in cheek and spit it out, tell us and that sort of tends to be the place that I might go to and be insensitive as a result of that to somebody with aphasia.

    Bill 39:43

    Have you found does aphasia get in the way of people going back to employment and being fully able to return to work? Say their other deficits have been sorted out or overcome? What does it stop people from doing?

    Olivia 40:02

    There’s definitely a functional impact. And so I mean, the patients that I’m working with, do have quite limited output in terms of their functionality in society and in the community.

    Olivia 40:18

    But having said that, like Emilia Clarke from Game of Thrones, had an aneurysm and had aphasia, and then has fully recovered and finished off the Game of Thrones Season, so you can fully recover.

    Olivia 40:34

    And yeah, she’s obviously back to it, and a lot of people with aphasia have, had it and worked hard and recovered fortunately, quite quickly, a lot of it within the spontaneous recovery, but then some, it might take years to recover.

    Olivia 40:49

    And some might not ever get fully back to where they were previously. And depending on the symptoms, and that level of severity, there’s certainly the possibility of them not being able to go back to work or participate how they’d like to in the community, which is really upsetting.

    Bill 41:10

    Now, I suppose it’s interesting way to go about motivating oneself about whether or not you’re going to do work in this space or not, it’s like trying to give people the opportunity to give back to something that perhaps was lost and, you know, would bring them a lot of joy, just talking would bring people a lot of joy.

    Bill 41:34

    But then that other level of you know, it stops people from being fully active member of the community or their family is difficult, do people does the general public and I’m generalizing, and I’m not trying to pick on anybody, but the general public, make it harder for people with aphasia.

    Bill 41:58

    Now, I’ll tell you why. And I know that in Melbourne, where we both live, I believe, we’ve got one of the best city designs in the world. So if you’ve got a wheelchair, you can skate down a ramp.

    Bill 42:11

    When you’re crossing the road and get up on another ramp when you want to get on a bus, there’s a ramp to get on the bus when you want to get on a train or a tram, the wheelchair just rolls in, and it’s all perfectly fine.

    Invisible Disability

    Bill 42:22

    So there’s a lot of awareness about physical disability that’s visible. But is there a lack of awareness about for lack of a better term, invisible disability, and how we support people that are experiencing things like communication issues?

    Olivia 42:44

    Yeah, absolutely. And I think people are very quick to judge. And this is obviously again, a generalization, but a lot of people are often quick to judge and, and don’t give the time that that person with aphasia might need. Often that judgment just comes from them, being unsure of their own safety.

    Olivia 43:09

    But you can imagine the impact that would have on a person with aphasia, who might be in a therapy session trying to practice their community engagement. So that might be a therapy session out at Bourke Street. And I might be trying to initiate a conversation by saying hello.

    Olivia 43:24

    You can imagine the mental health implications for someone trying to do that when a member of the public would just be scared and walk away or say I wouldn’t do it and get out of here. So yes, certainly, I think, because it is invisible. It is really, really difficult.

    Olivia 43:46

    And you don’t want to go down the path of putting labels on lanyards or ways to sort of label or identify yourself differently. So it’s a really tricky balance. And it’s something where I think ANFA hopefully will fill that gap a little bit, just helping create awareness.

    Olivia 44:05

    I mean, aphasia is more common than cerebral palsy, Parkinson’s, and multiple sclerosis combined. And I can, I mean, I know, I knew about all three of those things before knowing about aphasia, and it’s just the awareness. It’s just the awareness, I think, will make a really big difference.

    Bill 44:25

    That’s stunning. What you just said, that is stunning, because I’ve heard of all of those things. And I didn’t know what aphasia was until I had a stroke. And aphasia was a word that was being used a lot in stroke communities.

    Bill 44:40

    It seems like people who have aphasia, missing the one thing that allows them to be advocates for themselves, they’re missing the ability to communicate. And therefore, if you can’t communicate your challenge, you can’t make anyone pay attention and take notice, especially at the political level and at the level where perhaps, where you can ask for funding for example.

    Bill 45:05

    I know that stroke suffers the same thing. It’s strokes the leading cause of disability yet we hear about all of the fundraisers for cancer, cancer research, whether it’s breast cancer, prostate cancer, you know, any type of cancer, you name it. In Australia, we do awareness about cancer, like no other person, no country on the planet.

    Bill 45:28

    But when it comes to stroke awareness, I feel like even the Stroke Foundation struggles to you to utilize the the resources that are available to all these other I’m not sure, you know, ailments. And then when you have a failure, it could have happened because you’re a stroke.

    Bill 45:51

    And that’s another level removed. From the difficulty that stroke people face, you have now aphasia people who often come from a stroke background, and then they can’t even speak and be their own advocates, I can at least be my own advocate and advocate for stroke survivors.

    Bill 46:10

    But I don’t know how to advocate for aphasia. People who experienced aphasia, I don’t know how to do because I’m not in that space. I haven’t been there. So I find it really disheartening, I suppose. But nonetheless, I’m still doing this part. I’m doing what I can in the way that I can.

    Bill 46:32

    And I love supporting people like you, because you’re being the voice for these people. Do you feel like you’re the voice? Is that how you would explain it? Or express yourself? Or was there another way to explain or express that better?

    Olivia 46:48

    I hope that I’m getting across aphasia and the impact that it has on these people and their families. I think it’s more just advocacy, really, just really trying to advocate for these clients that might not be able to do it themselves, but also supporting the ones that can and providing them a platform to be able to really get the word out there. And I think, yeah, it’s just, it’s so prevalent.

    Olivia 47:18

    And it just needs the light shine on it. So our logo is a spotlight. And I think, yeah, hopefully, the, the amount of a night for aphasias, for all that we can do, the more people we can get on board and, and just raise that awareness. But it is really difficult. And I think, because it is invisible, and it is it presents in so many different ways.

    Olivia 47:42

    And these different ways very similar to other presentations. It’s really hard to sort of quantify or, yeah, it’s hard to help people understand what it what it looks like. So we’re working on on how we can make that happen. But yeah, advocating as much as we can, in whatever way we can is really important and the same as what you’re doing. It’s just fantastic.

    Bill 48:06

    Yeah, is somebody typing in the background?

    Olivia 48:08

    It’s my dogs.

    Bill 48:10

    That’s all right.

    Olivia 48:11

    There pitter-patter feet.

    A Night For Aphasia 2021


    Bill 48:13
    That’s all right. Okay. No problem. So as we get to the end, and wrap this up. Tell me about the event. And is tickets still available? Is it sold out? What’s the situation?

    Olivia 48:29

    Yeah, of course. So the event has now been moved, thanks to COVID to the 30th of July. So we’re in our event month, and it’s at high ground in Melbourne, which is just a stunning venue just in its own record, but it’ll be a really lovely evening at seven o’clock until 11.

    Olivia 48:53

    Ticket’s at $65 and it includes free hour drinks and food package, as well as obviously access to see our amazing panel speakers. And we’ve got some awesome raffle and silent auction items and all of the proceeds will go towards making the event bigger, and getting more people involved for the next event.

    Olivia 49:17

    We’ve also got the Australian Aphasia Association and Aphasia Victoria putting in silent auction item and whatever that sells for they get the full proceeds. So it means that they can get a bit of a boost into their organizations as well which is really lovely. And yeah, tickets can be purchased via our Instagram or our Facebook page. There’s a link to try booking on those.

    Bill 49:46

    What are the Instagram and Facebook page?

    Olivia 49:49

    Yes, so both called A Night For Aphasia.

    Bill 49:52

    That’s it just look it up on Instagram and look it up on Facebook. Well, I am really thankful that you doing the work How you doing. So I appreciate you for that. also appreciate you coming on to the podcast, sharing your story helping me become a little bit smarter about aphasia and understanding more about aphasia.

    Bill 50:10

    I love the work that you’re doing for stroke survivors advocating for them and all the work that you do. And I imagine all the other people not only stroke survivors who have had, who have aphasia, who came from a different background so thank you for that.

    Bill 50:23

    And I look forward to meeting you. I can’t wait for the night I’ve seen the venue. And I think it looks stunning, you’ve chosen very, very well. And as far as the $65 cover charge, I’m a one drink wonder. So if it helps, I’m only gonna have one drink. So hopefully the money that I don’t spend on drinking goes to the community.

    Olivia 50:46

    Thank you, oh, gosh, I think I’ll be in the same boat, as you know, but thank you so much for having me seriously, really, really special to you, you’re a pretty amazing human and the things that you’re doing awesome, I need to go back and listen to more podcasts. I think I was doing a few. Over the weekend. And you’ve had some really fascinating guest speakers. And I’m feeling really lucky to be a part of that now.

    Bill 51:12

    You know what I had, which was really amazing. I had, I actually had people with aphasia on there. And some of the conversations were just so heartfelt because one of the guys was 19. And he came on board. I reached out to him, I didn’t obviously don’t know that people have aphasia when I reach out to them.

    Bill 51:33

    And he just said yes, straight away. And then I think he said by the way, I have aphasia. So is that, okay? And I’m like, Well, how else are we going to get you on if there’s no other way to get you on. So they’re really short episodes of the conversation is really, you know, short and succinct so that we can just get general questions, but it’s not really about what they’re going to share or can or can’t share.

    Bill 51:55

    It’s about just getting the man to speak right? I found that really, really amazing. Because I did try to get on some aphasia I’m going to call them aphasia warriors. And a few people at the beginning 2, 3, 4 in a row said, Look, I have aphasia, I can’t do it, you know, I’m not going to do it.

    Bill 52:18

    And I didn’t completely understand what that meant when they said they can’t I imagine there’s a little bit of anxiety, perhaps that they feel due to the fact that they can’t speak and they are going to go on a podcast, and it’s going to go out to maybe hundreds of 1000s of people.

    Bill 52:37

    I don’t know what right. So I don’t push the thing. I don’t push the why or the why not. I just love to have people on and if they can’t make it, then it’s perfectly fine. But when I get people on who have aphasia, and we go through talking to them, I just, it is next level amazing, because it’s the hardest thing that they are trying to overcome.

    Bill 53:02

    So Jack was on episode 127, and the episode’s labeled Living With Aphasia After Stroke. And, you know, he was, I think 15 years old when he had a stroke and now has aphasia. And now he’s trying to overcome that. And he’s doing some great things. And he’s going back to school, and it’s starting to get back to that part of him his life that he had to put on hold when he was 15 and experience a stroke.

    Bill 53:31

    So that was really great. And then I also interviewed. Yeah, so the other person was Duncan Campling and he was a stroke survivor, locked-in syndrome, hasn’t been able to express himself properly, for quite a quite a long time. And what we did was we pre-prepared the questions, and I sent it to him, and he responded during the episode with the answers that he had pre recorded via his computerized voice.

    Bill 54:02

    And he’s a bit of a English gentleman from his origins. And as a result of that he had a bit of an English accent to his voice. So we had a really good conversation about you know, 15 or so questions and he responded to them in a way that was really useful. And we just edited that.

    Bill 54:23

    So it’s a really great episode for people to listen to, to just get an understanding of how some other people that are experiencing aphasia or difficulties communicating are getting along and they’re not leaving any stone unturned. They’re really are taking every opportunity they can to practice.

    Bill 54:41

    So, just a little bit of inspiration there. Hopefully that people will, hopefully people will resonate with that. Olivia, thank you so much for being on the podcast. I really appreciate it and I look forward to catching up with you in a couple of weeks.

    Olivia 54:54

    Pleasure me too we’ll cheers with a beer. Friday the 30th.

    Bill 55:00

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

    Bill 55:19

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

    Bill 55:34

    And I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker in sight. If this sounds like you, I’m here to tell you that you’re not alone.

    Bill 55:44

    And there is a better way to navigate your recovery and rebuild a fulfilling life that you love. I’ve been creating an inclusive, supportive and accessible membership community called recovery after stroke. This is an all in one support and resource program and is designed to help you take your health into your own hands.

    Bill 56:06

    This is your guidebook through every step in your journey from reducing fatigue, to strengthening brain health to overcoming anxiety and more. To find out more and to join the community. Just head to recoveryafterstroke.com See you next time.

    Intro 56:21

    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 56:38

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

    Intro 56:55

    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 57:16

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

    Intro 57:40

    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 A Night For Aphasia – Olivia O’Hare appeared first on Recovery After Stroke.

    59 min
  • Losing Appetite After Stroke – Tamare Orilus

    Losing your appetite after a stroke is a very rare condition that only affects very few stroke survivors. Tamare Orilus has had no appetite for 9 months and lost almost 100 pounds but is now ready to eat again.

    Socials:

    www.instagram.com/bklynbosslady1/

    Highlights:

    02:01 Introduction

    04:28 Waking Up After A Coma
    08:26 Post-stroke Deficits
    09:20 Losing Your Appetite After Stroke
    14:53 Post-stroke Fatigue
    20:42 Life Before The Stroke
    30:41 Psychological Issues
    38:16 Better Days Ahead

    Transcription:

    Bill 0:00

    Is it a good thing that you lost your appetite? And I’m not trying to be funny or smart or anything about weight gain and weight loss or anything like that, but I’m just curious, like, how have you taken it? Are you seeing it as a thing that you would prefer not to be going through? Or what’s that, like?

    Tamare 0:18

    It’s a good thing for me to lose weight, but I’m like, it’s almost a year. I’m gonna get some kind of upside back. You don’t get enough, I lost over 90 pounds. So I’m ready to eat now.

    Intro 0:38

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

    Bill 0:52

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

    Bill 1:06

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

    Bill 1:26

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

    Bill 1:47

    This is your clear pathway to transform your symptoms or reduce your anxiety and navigate your journey to recovery with confidence head to recoveryafterstroke.com To find out more after this podcast.

    Introduction


    Bill 2:01
    But for now let’s dive right into today’s episode. This is Episode 149. And my guest today is Tamare Orilus, who had an AVM rupture that amongst other things caused her to lose her appetite and shed almost 100 pounds Tamare Orilus welcome to the podcast.

    Tamare 2:20

    Hi.

    Bill 2:22

    Thank you for being here. I really appreciate it.

    Tamare 2:24

    Thank you. So I had an AVM in my head, September 5th 2020, I had three surgeries. I had a Shunt put in on my right side of the head. So I’m still going to therapy. I’m doing speech OT and PT twice a week. I’ve no appetite still it’s a litle bit better, but not as before. I lost a lot of weight. I was 245 and now I’m 152.

    Bill 3:11

    Wow. So how did you first discover that? There was an AVM in your head? What were the symptoms that you were experiencing?

    Tamare 3:22

    Actually, it was a Sunday morning I woke up. It was my day off. I had a headache. bad headache in the back of my head. I told my husband I’m having a stroke.

    Bill 3:37

    You told him straight away. You were having a stroke? You knew?

    Tamare 3:40

    Yeah. And I just know. And I never had a stroke before. So I told him call 911 I’m having a stroke. He said what do you mean? I said I’m having a stroke? So he called 911 they were scared to come because of the COVID-19.

    Tamare 3:58

    So I talked to them. I told them I’m a member of service. I work for the city. So finally they came. They took me in, and that was the last, when I woke up was October 30.

    Bill 4:14

    So when did the stroke happen? What month?

    Tamare 4:20

    September 5.

    Bill 4:22

    You woke up almost two months later was the first time you woke up?

    Tamare 4:27

    Yes.

    Tamare Orilus – Waking Up After A Coma

    Bill 4:28

    Wow. That’s dramatic. So you had a headache and you told your husband you’re having a stroke. He called 911 eventually. And then they eventually sent somebody along. And then you woke up two months later. When you woke up, did you know what happened? Did you remember anything? What was that like?

    Tamare 4:52

    I was having a lot of dreams. My husband said they put me to sleep once they knew I was bleeding in my head. And then, I was dead. My husband told me everything that happened to me. I was like, oh my God.

    Bill 5:17

    So you had to be told what happened? Did you understand the situation that you had found yourself in that when you woke up? Or did that take some time? Was it a little bit difficult to grasp the concept?

    Tamare 5:33

    Well, my husband told me what happened. I had a stroke, and a bleeding in my head. So I took everything.

    Bill 5:43

    And did they operate to remove the faulty blood vessel? How did they deal with the AVM?

    Tamare 5:49

    Yeah, I had three surgeries. I had (inaudible) and I had two other surgeries, so they removed the blood. But, I came home. I’m doing therapy. But some time in November, I had to go to a hospital because I had an infection. When I got to the hospital they said I had UTI. And then a week before thanksgiving I came home ever since I’ve been okay so far thank God.

    Bill 6:27

    How old were you at the time?

    Tamare 6:30

    I was 44. So I had the stroke on September 5th and my birthday was September 19th. So I spent my birthday in the hospital and my kids I have a boy and a girl.

    Bill 6:52

    And how old are they?

    Tamare 6:56

    At that time, they were 15 and 20. The boy 15, the girl 20.

    Bill 7:04

    And how did they deal with mom being in hospital for nearly two months recovering from an AVM bleed.

    Tamare 7:11

    Well my daughter said she cried a lot. And then my son told me the same thing. And, my husband quiet all the time. He said everyday he was fine. But they’re just thankful I’m here.

    Tamare 7:29

    But I’m going through it.

    Bill 7:32

    How long ago did that happen to you Tamare?

    Tamare 7:37

    Nine months ago.

    Bill 7:39

    Okay, so you’re very early on in the recovery. What kind of things did the AVM surgery and the shunt and everything that you experienced? What did it leave you with? What experiences in your body are you still recovering from physical and so on?

    Tamare 7:59

    My left hand is shaking, shaky when I wash the dishes, then my appetite. I have no appetite.

    Bill 8:08

    You have no appetite?

    Tamare 8:12

    Right. And basically that’s it, I had problems with my right leg, but it’s fine now. So it’s just my hand shaky and my appetite really right now.

    Post-stroke Deficits

    Bill 8:26

    Do you have muscle weakness in the hand? Is it just shaky?

    Tamare 8:30

    Just shaky.

    Bill 8:36

    That doesn’t stop you from doing anything. Does it interfere with your daily activities?

    Tamare 8:41

    No, I push myself to do things, I take a shower by myself, I get dressed. I try to clean and do everything by myself. I push myself to things because I wan’t to be better.

    Bill 8:57

    It’s part of your rehabilitation. Do you feel like doing these things and pushing yourself a little bit? Are you doing it to help you with the rehabilitation process?

    Tamare 9:07

    Yeah I do it for rehab. I get sad sometimes.

    Losing Your Appetite After Stroke


    Bill 9:20
    Is it a good thing that you lost your appetite? And I’m not trying to be funny or smart or anything about weight gain and weight loss or anything like that, but I’m just curious, like, how have you taken it? Are you seeing it as a thing that you would prefer not to be going through? Or What’s that like?

    Tamare 9:40

    Well, it’s a good thing for me to lose weight, but I’m like, it’s almost a year. I want to get some kind of upside back. I don’t get enough I lost over 90 pounds. So I’m ready to eat now.

    Bill 9:59

    So, when do you eat? You must be eating because you’re alive. Thank God but I know I understand you’re eating less you don’t have an appetite but how do you go through that process to stay nourished and to stay alive?

    Tamare 10:16

    So my husband he does drinks for me. In a blender he does fresh fruits. Like watermelon strawberries, bananas, and I’ll drink. I take a lot of vitamins.

    Bill 10:32

    Okay, and are you able to swallow and chew regular food? Is that still okay?

    Tamare 10:38

    Yes I’m able to drink, swallow, everything’s good. It’s just, I cannot smell, I cannot taste or no appetite.

    Bill 10:53

    Okay, so you also can’t smell and taste and there is no taste? Does that mean that there’s nothing there’s no feedback. So there’s no you don’t know if it’s salty or unsalty or spicy?

    Tamare 11:07

    Right. No taste at all.

    Bill 11:11

    So you don’t feel chilli or anything like that?

    Tamare 11:15

    No.

    Bill 11:17

    I know it’s strange and odd. But how do you reconcile that? Is that bizarre and weird to you? Does it make food not edible? Or how does that work?

    Tamare 11:28

    Well, if you can’t smell, you can’t taste. You can have no ability to eat. You don’t have the urge to eat. So sometimes I push myself to eat, but I feel gaggy like I want to throw up.

    Bill 11:44

    Do you want to throw up because the experience is not pleasant?

    Tamare 11:53

    It’s not pleasant.

    Bill 11:57

    Wow. And has it changed at all since you woke up after the surgery and the bleed? Has it changed at all? Or is it still remained the same? That lack of sense of smell and lack of sense of taste? Is that still the same?

    Tamare 12:13

    Well before I used to smell really bad the food and stuff but now. I just don’t smell anything.

    Bill 12:25

    Does it stop you from cooking and preparing meals? Or is it just the eating?

    Tamare 12:31

    I haven’t been cooking yet. Because of the shakiness. I’m still waiting. I haven’t been cooking or driving. I’m waiting after the 1 year anniversary.

    Bill 12:50

    Okay, so do you need to get permission from your doctors to go back to driving?

    Tamare 12:55

    Yeah, my neurologist told me to wait for one year to drive.

    Bill 13:00

    Okay. So they’ve resolved the problem in your head as in, the AVM is not going to bleed again. It’s not going to cause problems again, because it’s been dealt with?

    Tamare 13:10

    Yeah, that’s what they said. I should be good. They did another MRI. And they said everything was okay.

    Bill 13:20

    Yeah, so now it’s basically about recovering and getting better and healing the brain is right?

    Tamare 13:26

    Right and I have another appointment in September 21. So they could check my head to make sure everything’s good.

    Bill 13:38

    Yep. How does the rest of the recovery look? Are you experiencing fatigue? Are you having cognitive issues at all? Do you have any other challenges?

    Intro 13:50

    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?

    Intro 14:07

    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 14:30

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

    Tamare Orilus – Post-stroke Fatigue


    Tamare 14:53
    Oh yeah, like I’m out of breath a lot. Like if I (inaudible) I’ll have to go lay down after to take a nap because I get tired I feel exhausted. But I don’t know how long this is going to last. Everything I do after after I have to go lay down to rest. But I’ve been reading a lot. I see people run marathons. I’m like, how do they do it? I’m always tired?

    Bill 15:27

    Well, I’ve got an idea for it. I think they’re crazy people, firstly, for running marathons. Because, only crazy people run marathons, but I love that they are doing it. I think everyone experiences stroke differently, and what you’re talking about the fatigue I can relate to, I had serious fatigue for a long time.

    Bill 15:47

    And when I was doing anything minor or major, I had to plan for rest time after that, whether it was going somewhere and visiting some friends or going to dinner, or just doing some chores around the house. Anything that I did, always had to have some rest time afterwards.

    Bill 16:09

    And I started to get used to planning my day like that. So I knew that if I was going to go to an appointment, to see my doctor, or to do rehab, outpatient rehab, then I was going to come home, and I was going to do nothing for a couple of hours. So it does get better, the fatigue does get better. But sometimes the fatigue is still a problem for me, even nine years later, it still causes days where I can’t do anything.

    Bill 16:35

    And where I need to rest and rest and rest. And majority of the days are better. And the majority of the days I’m quite active. But I wasn’t at the beginning. Also, I was like you is just extremely tiring to do anything. A lot of stroke survivors say the same thing. And the people running marathons are typically not running marathons nine months after the stroke.

    Bill 16:59

    Most of them are not getting back to being that physically active that quickly. And that’s one of the challenges with social media, and even this podcast. It’s very hard to tell the whole story. And you just see what a stroke survivor is doing in a snapshot on one part of the day. And people make assumptions “my god, they’re running a marathon how can I get to that point? How did they get this so quickly?”

    Tamare 17:25

    Yeah, that’s what I’m like, Oh, my God, marathon? I can’t even think about marathon. Like before this meeting I had to take a nap before I got on. Because I need my rest.

    Bill 17:41

    Your voice you mentioned to me that your voice is a little bit different than what it used to be.

    Tamare 17:45

    Right?

    Bill 17:46

    What caused that?

    Tamare 17:49

    The stroke, It was worse before. When I had the stroke. It was getting very tired of speaking. But now my tongue is just heavy.

    Bill 18:03

    Your tongue is heavy?

    Tamare 18:06

    So yeah, it got better though. It was worse before.

    Bill 18:14

    So there seems to be a lot happening there with your nose, your taste your tongue, your speech? It all seems to be connected.

    Tamare 18:21

    Right? Exactly.

    Bill 18:24

    But you’re noticing that it is getting better after time. So it’s nearly been nine months. Almost we’re coming on to.

    Tamare 18:31

    I know but 9 months is a lot.

    Bill 18:35

    You feel like it’s too long to recover? Is that because you’re an impatient person? Or why?

    Tamare 18:45

    Maybe because I’m impatient.

    Bill 18:48

    Yeah. And you want to get back to regular life. You want things to be better. But you’ve come a long way right? You probably weren’t speaking like this. Eight months ago. Would that be accurate?

    Tamare 19:01

    Yeah, you’re right.

    Bill 19:05

    Do you ever look back on your recovery? And see, perhaps some videos of you in a hospital or some photos? And do you ever look back and go well, actually, I’ve come a long way. I’ve recovered quite a lot. And I’m getting better every day?

    Tamare 19:19

    Yeah, my family told me to look at some pictures and see I came a long way, I’m here for a purpose.

    Bill 19:27

    Yeah. And your kids are they’re making life easier? I remember when I had the stroke. My kids were teenagers. They didn’t make my life easier. Yeah, they made it harder. How are your kids doing?

    Tamare 19:38

    My son is very helpful both of them they’re good they’re very helpful. Thank God.

    Bill 19:46

    Yeah. Are they still themselves though or have they changed their behavior around you? Are they are they still themselves?

    Tamare 19:57

    Well my daughter still goes away but my son, he’s here with me. He’s always looking out for me. Mom don’t cry it’s going to be okay.

    Bill 20:09

    Yeah. What’s the hardest part of all of this for you? What have you had to deal with? That’s been the hardest that you didn’t really expect.

    Tamare 20:21

    Being tired.

    Bill 20:30

    That’s okay. Being tired, so what was life like before the stroke? Were you a very active person when you’re working? What were you doing before the stroke?

    Life Before The Stroke


    Tamare 20:42
    I was working. I was very active, I was having brunches at my backyard. I was doing barbecues. I was doing everything now just nothing.

    Bill 21:07

    Is it difficult to explain to people what you’re going through and what you’re experiencing? Are they finding it hard to appreciate that or understand it?

    Tamare 21:15

    Some people don’t understand. But it’s just hard for me to grasp.

    Bill 21:31

    It’s hard for everybody that goes through the experience of seeing one of their loved ones have a stroke. But in also, for the stroke survivor, there’s no doubt about it, that it’s hard. The thing about it is, is that I feel like, the only advice I can give you is that it’s going to get better.

    Bill 21:55

    And you just have to give it time and this thing, you have to give it more time than anything. It’s not like a broken toe or an injured hand. It takes a long time, because the brain is very complex in the way that it heals. And it’s often the brain is often always easily made to feel worse.

    Bill 22:19

    So it’s sensitive. And as a result of that sensitivity. We can very easily give ourselves a hard time and create a setback. Do you know what I mean? But have you noticed that your fatigue and your setbacks are getting smaller and shorter?

    Bill 22:36

    Because at the beginning, it would have been very difficult, but the timeline should have decreased those setbacks and your recovery time should be increasing or should be getting quicker. Do you notice that?

    Tamare 22:50

    Yeah, I do notice. I do notice a lot of changes. I used to waste it before. But I’m getting better as time goes by. It’s just the speaking it bothers me.

    Bill 23:08

    The speaking bothers you because of the difference in your voice and the way that it’s different to speak in the way your tongue feels?

    Tamare 23:15

    Right, right.

    Bill 23:19

    Has the COVID locked down, and all those things made it harder to access services.

    Tamare 23:26

    Well, actually I go to PT, I go to OT, I do zoom speech.

    Bill 23:36

    So Zoom speech therapy, and then you go to OT, occupational therapy, and PT. So that happens at a location outside of your home?

    Tamare 23:49

    Yes.

    Bill 23:50

    And how often are you doing that?

    Tamare 23:53

    Doing twice a week, OT and PT. I’m doing Speech Zoom once a week.

    Bill 24:03

    So do you appreciate being able to speak like this on a podcast? Does that help with your recovery?

    Tamare 24:12

    Well, before I had the AVM I never heard of AVM before. Yeah. So I just wanted to come on because I want it to be out there. AVM, cuz a lot of people don’t know about AVM, I didn’t.

    Bill 24:28

    Yeah, it’s very common. Arteriovenous Malformation is what it stands for. It’s supposedly quite rare. But the amount of people that I’ve met has been a large number of people. I’ve been blown away. And I of course also didn’t know what an AVM was beforehand.

    Bill 24:46

    Have you had some conversations with your husband? about your experience and was there some real difficult conversations there? What was that like? How did it impact you guys?

    Tamare 24:59

    Well I tell him alot, I told my sister she’s an NP Nurse Practitioner. So she understands what the AVM. So I talk to them alot about AVM.

    Bill 25:19

    Yep. So you talk to your sister. I think your sister contacted me on Instagram. She wanted to see an interview live, but it’s pre-recorded. So we’ll get a copy to her. When it’s ready to go. So it was Miriam. Is that your sister?

    Tamare 25:41

    Yeah.

    Bill 25:43

    So she’s been really good. And I imagine a really great resource during this time?

    Tamare 25:48

    Yes. She told me alot of information about this. AVM she’s really good.

    Bill 25:59

    How’s your memory after all of this? Is it okay, or are you struggling sometimes?

    Tamare 26:05

    My memory was bad before, but it’s better now.

    Bill 26:13

    It was bad after you woke up?

    Tamare 26:16

    Yeah.

    Bill 26:20

    But it’s better now. So what kind of work were you doing before the stroke?

    Tamare 26:30

    Okay, so I was a Correction Officer. So I work on Rikers Island.

    Bill 26:41

    So that’s a tough job.

    Tamare 26:42

    Yeah. But I’m gonna do early retirement.

    Bill 26:49

    Yeah. That’s a difficult career, and therefore it’s not an easy career to go back to. Is that right?

    Tamare 26:55

    Yeah. Some people asked me to go back but I don’t want to, too stressful.

    Bill 27:05

    And is being a correction officer easier or harder than being a stroke survivor?

    Tamare 27:14

    I feel it’s stroke survivor. Cuz I never did it’s my first time to experience this so I’m new to this.

    Bill 27:25

    Hopefully it’s your last time too. Of course. You’re a tough lady, though, to be able to work in a corrections facility and deal with all the stuff that goes on in the place like that. Do you do learn some skills from that job that you can bring into your stroke recovery? Is there a way that you can transfer what you’ve learned there into the way that you recover?

    Tamare 27:53

    Just to be a strong person, consistent that’s it.

    Bill 28:01

    Just to be a strong person, and is it okay for you to not be strong sometimes? Do you have times where you can’t be strong where you’ve had enough?

    Tamare 28:13

    A lot of time. I cry, why me? You know?

    Bill 28:23

    Did you seek out any emotional counseling or psychological counseling since then?

    Tamare 28:30

    Yeah. I was having depression, anxiety attacks. So I used to go for a walk in the park. So now like every two weeks. And I’m on pills to sleep at night.

    Bill 28:56

    Yeah, what do you think was behind the anxieties anxiety of another episode? Or, you’re not certain what the anxiety is about?

    Tamare 29:06

    I just felt hot, I need some air. It just came on. I’ve never had that before.

    Bill 29:20

    Does it feel like a buddy gets overwhelmed and you need to get some fresh air and you need to move and go outside? Is that where you get that from?

    Tamare 29:32

    To go out and stuff like that.

    Bill 29:36

    And then it dissipates and it gets better quickly, or how long does it take to recover?

    Tamare 29:41

    Well my husband takes me to the park, I walk, and I come home then I feel better. But now I’m on medication every night. I take towards sleep to calm me down.

    Bill 29:58

    Medication is anti-anxiety medication to help you sleep or is sleeping tablets to help you sleep?

    Tamare 30:06

    Anti-depressopn pills.

    Bill 30:08

    Okay. And that’s the first time you’ve been on that type of medication?

    Tamare 30:19

    Yes. Well, my sister told me I was on that when I was in the hospital, but I don’t remember.

    Bill 30:26

    Right. Okay. So these are all new challenges for you. You haven’t been on this type of you haven’t had this type of experience at all before. Did you take any types of medication beforehand?

    Tamare 30:40

    No.

    Psychological Issues

    Bill 30:41

    Yeah. And is that the entity depression medication because you’re feeling emotions that are full of sadness? Or what’s the reason behind that? Do you know?

    Tamare 30:56

    Sadness. I’m feeling sad. I’m thinking too much. Yeah, sometimes I feel something in my my throat. But I know it’s in my head in my head.

    Bill 31:14

    You feel that sometimes it’s in your throat, did you say?

    Tamare 31:17

    Yeah, like, I have food in my throat blocking me from eating? But I know it’s on my head.

    Bill 31:26

    Okay, so there’s some kind of a loop happening of connection. That’s telling you that there’s something interfering with you here and therefore, that plays on your mind. And you overthink that?

    Tamare 31:40

    Yeah.

    Bill 31:40

    And how do you find yourself getting out of that loop? What happens that you eventually stop thinking about it and you get over it?

    Tamare 31:48

    Sometimes, I just go and lie down, take a nap.

    Bill 31:55

    Okay, does that explain why your husband makes a lot of smoothies or, or liquid type of foods? Is that why? Because of this situation where you’re feeling like things are getting stuck?

    Tamare 32:09

    Yeah. Sometimes I tell him to make me a little drink so I can feel better.

    Bill 32:21

    So what are you hoping to do on this podcast? What’s the point of being on this podcast? I know that I reached out to you and asked you to come on and share your story. I was very curious to meet you because you said that your issue was one of the issues that was the inability to eat and no appetite and no smell and no taste.

    Bill 32:48

    That was the reason why I contacted you. I’m sure there’s a lot of stroke survivors going through that. But what are you hoping to get out of this? Is it somehow therapeutic to be on an interview podcast? How does it help?

    Tamare 33:06

    Yeah, like I was saying before, a lot of people don’t know about AVM. So I’m gonna, you know, put it out there. That God forbid this could happen to you you know, you never know. Cuz I was fine. On Saturday I was fine, and then Sunday, This happened to me.

    Bill 33:30

    Yeah. Just Just out of nowhere.

    Tamare 33:32

    Out of nowhere, Saturday, I got up. I went out, I went to eat and came home, cook, went to sleep and then suddenly went this is it.

    Bill 33:47

    Before the stroke or before the first bleed, do you recall at all had you ever had any signs that maybe there was something wrong with your head? Any bad headaches, any difficulty? Anything like that?

    Tamare 34:02

    Well, I had the headache in my left side. They had called neuralgia. They say I had bad so I was taking medication. But that was that. They did an MRI but they never told me anything was wrong. But my children told me told my husband I had this for a while. It was waiting to rupture. They said I could’ve sneezed and it would’ve burst in my head.

    Bill 34:42

    You’ve had it since birth. Actually, you’re born with these things. In the head since birth, and they are quite rare compared to the people in the population that had them. There’s not a lot of them. But you were born And then from a lot of people, nothing happens, it doesn’t actually do anything.

    Bill 34:46

    So a lot of people might have one and not know that it’s there. And it may never burst. Yeah, but for the lucky ones like you and me, yeah, it decides to rupture for some reason, and then cause those issues. And what I’ve found is a lot of the stroke survivors I’ve spoken to that had an AVM have been between the ages of 30 and 45, and 50.

    Bill 35:30

    Somewhere there. So there’s this window. In later in midlife, I suppose best way to sort of describe midlife, you know, around that age, somewhere around 40, where they rupture for a lot of people, there’s, that’s a very common thing that I’ve found.

    Tamare 35:50

    Wow.

    Bill 35:52

    And lots of people, you know, struggling with and overcoming it and finding it difficult because they’ve never been in this situation before. They never knew about it, they never understood. But what I’d like to tell you now that we’re chatting, tomorrow, and you’re on my podcast is that you’re very early on.

    Bill 36:14

    And I know that impatience is one of those things that we all go through, but you are very early on in your recovery. And based on what I’m hearing, and how we’re chatting, I feel like you’re going to come a long way. And it does get better. And I’m nine years out speaking like this, but of course, I wasn’t speaking like this nine months out, nine months out, I didn’t know who had come to visit me my memory was terrible.

    Bill 36:43

    I couldn’t work, I couldn’t drive. I couldn’t talk like this on a podcast for such a long time. I couldn’t exercise. You know, fatigue was really, really bad. So it was a lot harder nine months after my stroke after being released from hospital than it is today. But that’s the most important thing that I need to share with you is that I’ve been doing this recovery now for nine years, and I have a lot more symptoms, than you have.

    Bill 37:18

    It’s a long time. Yeah, it doesn’t ever really stop, you know. And it gets better, though. Like, it’s definitely better. It’s not as bad as it was. And I don’t feel as terrible as I did at the beginning. So that’s really my message, I really want to make sure that you understand that. And hopefully that makes you feel a little bit better about this better days ahead.

    Bill 37:41

    And that you will get better and better every single day. And at some point, you’ll look back and you’ll go well, I’ve come a long way further and further than I ever thought, you know, your speech will improve. Your ability to cook a meal for your family will come back at some point, you’ll find a way to express yourself and to go back to work and to do all those things. You you will achieve all those things. It’s just gonna be a matter of time.

    Tamare 38:14

    You had an AVM too?

    Better Days Ahead


    Bill 38:15
    Yeah, I had an AVM. And it was near the middle of my head near the cerebellum. And it was about two inches in from the ear. It was a really hard one to get to and it bled three times. And I had brain surgery to remove the faulty AVM and I had to learn how to walk again and use my left arm again.

    Bill 38:40

    So I had to go through lots of things that you’ve been through. And I’ve come out on the other side and a lot of stroke survivors who are in the very beginning of it suffer and struggle because they don’t know future holds, you know, and I was the same I was like you so you’re not any different to anybody else.

    Bill 39:03

    You know, my relationship suffered. My ability to have a good experience with my children suffered, I became angry and cranky. I was crying a lot. It was a really difficult time. You know, I was questioning everything and I was 37 when it happened.

    Tamare 39:26

    Wow.

    Bill 39:29

    There’s brighter days ahead, there really is and you’ll find that you’re getting better and better.

    Tamare 39:38

    Okay, thank you. Just wait.

    Bill 39:43

    That’s all you can do. You can just wait and do your PT like you’re doing you know, do your OT and do your speech therapy. That’s it. If you’ve got heaps of time on your hands, and you’re not tired. Just put that time into rehabilitation and even if that means doing chores like you said, chores are a great way to do rehabilitation.

    Bill 40:06

    Even though it could be seriously boring and all that kind of stuff, it’s still good to be able to do the things that you get to be good at home, you know, if you can do those things at home that you need to do well, they’ll help you with other things outside of home.

    Tamare 40:23

    Thank you.

    Bill 40:25

    You know. So, look, I’ll wrap it up. It seems like I don’t want to have you on here for too long and tire you out too much.

    Tamare 40:34

    Okay. Well I’ll come back later on, once my voice is better.

    Bill 40:39

    I’d love to have you on again. Absolutely you keep in touch. And I really appreciate you coming on and sharing your stories so that other people going through what you’re going through can relate to you and understand you. And also, I love the fact that you wanted to raise awareness and make it about other people. That’s an amazing thing. I wish you well, and a speedy recovery.

    Tamare 41:07

    Thank you for having me.

    Bill 41:08

    Yeah. My pleasure.

    Tamare 41:11

    I will keep you up to date.

    Bill 41:13

    Yeah, I’d love to, I’d love to see your posts on Instagram. And I look forward to hearing how your recovery is going and you know, maybe maybe soon, things will shift for you and start to improve.

    Tamare 41:30

    Okay, thank you. Thank you so much.

    Bill 41:32

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

    Bill 41:51

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

    Bill 42:07

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

    Bill 42:29

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

    Intro 42:50

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

    Intro 43:07

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

    Intro 43:24

    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 43:44

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

    Intro 44:09

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

    The post Losing Appetite After Stroke – Tamare Orilus appeared first on Recovery After Stroke.

    45 min
  • Young Stroke Survivor – Izzy Hurst
    Izzy Hurst was at the Manchester Arena in England the day a terrorist detonated a bomb at the completion of the Ariana Grande concert. This began a series of health events that would lead to Izzy Hurst experiencing a stroke aged just 17.
    1 hr 14 min
  • Young Stroke Survivor – Izzy Hirst

    Izzy Hurst was at the Manchester Arena in England the day a terrorist detonated a bomb at the completion of the Ariana Grande concert. This began a series of health events that would lead to Izzy Hirst experiencing a stroke aged just 17.

    Socials:

    www.instagram.com/beyond_a_brokenbrain/

    Highlights:

    02:18 Introduction

    03:02 Acquired Brain Injury
    10:50 Cerebral Venous Sinus Thrombosis
    20:02 Young Stroke Survivor
    23:59 Drinking Alcohol After Stroke
    28:37 Drug Side Effects
    35:07 Better After The Stroke
    45:19 The Recovery After A Stroke
    54:33 Recovery With The Help Of Family
    1:03:08 Future Plans Of Izzy Hirst

    Transcription:

    Izzy 0:00

    Really, I was just not happy for a long time. And when you’re not happy, what you should do is change something. But I was doing the complete opposite. I was like resisting any change that wanted to happen.

    Izzy 0:11

    I didn’t move forward with my new self, I was looking back on my old self and just comparing and like, you know, I want to be doing that. And I would have been doing this right now I would be going to uni right now.

    Izzy 0:21

    And just I always kind of comparing, and then I think what I’ve kind of learned without realizing I was learning it was. If you didn’t like the situation that you were in, it doesn’t matter what’s happened. The three things that you can do I really like this saying.

    Izzy 0:39

    Three things that you can do, you can either leave it, change it or accept it. Obviously, after you’ve had a stroke, you can’t change it, it’s happened. You can’t leave it because you live in it. There’s only one thing that you can do if you want to move forward and that’s to accept it.

    Intro 0:58

    This is the Recovery After Stroke Podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 1:12

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

    Bill 1:23

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

    Bill 1:38

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

    Bill 1:54

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

    Bill 2:05

    This is your clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence, head to recoveryafterstroke.com to find out more after this podcast.

    Introduction

    Bill 2:18

    But for now let’s dive right into today’s episode. This is Episode 148. And my guest today is Izzy Hirst who was at the Ariana Grande concert at the Manchester arena on the 22nd of may 2017 when a terrorist detonated a bomb as fans were exiting the building at the end of the concert.

    Bill 2:37

    This event started a cascade of events that would end with Izzy in hospital recovering from a stroke at 17. Izzy Hirst, welcome to the podcast.

    Izzy 2:47

    Hi, thank you for having me.

    Bill 2:49

    My pleasure. Thank you for being here. You are living with an acquired brain injury. Tell me a little bit about what happened to you how that came about?

    Acquired Brain Injury

    Izzy 3:02

    Okay, so there’s kind of a bit of a backstory to it. I acquired the brain injury in December 2017. But the story kind of starts in May that year. And so my family and I and my best friend, we were at the Manchester arena, I’m not sure if you’re aware when the attack happened.

    Izzy 3:21

    And that we weren’t physically harmed, we were really lucky in that aspect. But it caused quite a lot of sort of mental problems in terms of like the stress that it caused, and things like that.

    Izzy 3:35

    And that May time is around when exams would typically be. And so because I couldn’t sit the exams. And because of the stress that that event caused, it was arranged that I would sit them when I went back into September.

    Izzy 3:47

    And so that happened and that was all, you know, it was all fine. I was dealing with that. I thought, that’s fine. I’ll go back and do those in September, you know, I’ll be all sorted because my plan was to go to medical school.

    Izzy 3:58

    So those exams were quite a big deal to me. And sort of over the summer with the stress of that event. I started to just get just really minor like abdominal symptoms like stomach pain, I wasn’t eating a lot of just pair after eating and things like that.

    Izzy 4:15

    And I just didn’t think so much about I thought it was all linked to Manchester and it was just a stress about sort of physically manifesting. And then in the September when the exams rolled around, obviously the stress just sort of went from here to here.

    Izzy 4:29

    Because I had these exams that I was putting a lot of pressure on myself for revising until like 3am. And yeah, the symptoms just sort of match that and it went from just sort of stomach pain and not eating so I was going to the toilet I think about maybe 15, 20 times a day.

    Izzy 4:47

    I was passing blood, and what happened sort of across of time from September to December was the symptoms just got worse. And I also developed neurological symptoms.

    Izzy 5:00

    So it started with a really awful headache on the left side, and just couldn’t cope with scenery. I was just in a dark room for about two weeks before the actual stroke. And I couldn’t deal with any noise I couldn’t eat I was throwing up.

    Izzy 5:15

    And so at this point I was I was getting really dehydrated because of whatever was going on with my stomach. And I wasn’t eating, couldn’t drink, couldn’t keep fluids down or anything so I was, you know, getting really dehydrated.

    Izzy 5:28

    And in that sort of three month period as well, we went to doctors about four times, we went to a&e four times, and my parents paid for me to be seen privately. That was actually the night before my stroke, because it just couldn’t get any answers or help from anyone.

    Izzy 5:43

    And so the night before my stroke, the doctor that we saw, he said, I think that this is colitis. And it’s sort of there’s something going on with dehydration that’s causing the neurological thing.

    Izzy 5:55

    But I can’t admit you here because that was in a hospital private hospital that wasn’t in my hometown. So they wanted me to come back home and be seen here. And to travel back the next morning.

    Izzy 6:08

    And quite early on, because I couldn’t sleep anywhere. So we thought we might as well get home and see if I can get admitted to the hospital. And I collapsed in like as I came in through the front door and it wasn’t a stroke or anything.

    Izzy 6:21

    This was I think just the traveling with that, like pain and fatigue. And I just collapsed because I sort of had enough and my mom, she said she’d had enough of waiting and she rang an ambulance. And it’s a really good job that she did. Because maybe within an hour I was at the hospital and I was having my first seizure. And what turned out to be a stroke.

    Bill 6:42

    Gosh, so the event in Manchester you’re talking about is the terrorist attack at the Ariana Grande concert. That’s the one right?

    Izzy 6:52

    Yeah.

    Bill 6:53

    So where were you in regards to the vicinity of that particular blast? How far away were you? Did you hear it?

    Izzy 7:02

    Yeah, so we were lucky. Again, like I said, we weren’t physically harmed. But the blast sort of happened in the kind of the reception like the foyer area, we were still in the stadium at the time, the concert, literally just it was like seconds after the concert finished that it went off.

    Izzy 7:19

    But we were across the other side of the stadium. And we had it go off. And then just heard the screams, the chaos stack, see people sort of mourning and piling back into the stadium. And that was when your heart just used to go to like survival mode. And it was just like run, and I was 17.

    Bill 7:38

    Yeah, that’s so young to have to deal with something so traumatic and unexpected, and without real reason, with no real reason other than for craziness. And then you’ve gone through quite a difficult period of time after that as well. It looked like we’re things at all settling down? Did you have issues with the way that you were coping with what happened after the blast? Did you get support for that? What was that like?

    Izzy 8:12

    It’s been quite a long journey with that, to be honest, because that happened. And it was sort of a cross period of time. Oh, well, I’ve just had an EMDR I’m not sure if you’re familiar with what that is.

    Izzy 8:26

    These eye movement, rapid desensitization. And you sort of talk through it, what you do for me, because it was on zoom, I couldn’t do the eye movement started tapping, like this instead, it allows you to talk through it without getting sort of re-traumatized.

    Izzy 8:41

    So I’ve sort of dealt with that. Now I’ve put that to one side, because I’m feeling a lot better about it. But for like, up until my stroke I was just not sleeping because I’d have flashbacks and nightmares.

    Izzy 8:55

    I would be constantly hearing the bomb going off in my head. And things like music events, I did go to what I would not enjoy them. I’d just be looking around thinking someone’s gonna do something, someone’s gonna attack me.

    Izzy 9:06

    And before I went to bed on a night, it sounds crazy. But I check my cupboards and under my bed, I thought there was a bomb in there. I’d wake up and see the attackers face. And yeah, it was really awful. And then it was maybe in the September, I started counseling for it.

    Izzy 9:23

    So I felt sort of ready to talk about it and you know, deal with all those things that were going on. But unfortunately, partway through that counseling, I became ill and I couldn’t go anymore. And then the person that I was seeing, she moved down to London, and I’m in the north, so I just couldn’t continue with that.

    Bill 9:40

    That’s been a tumultuous time now. Is it coincidental to you? Do you feel it might be coincidental at the time when you were doing the counseling and perhaps reliving some of those experiences that you also got this other symptom in the gut? Do you feel like there’s a coincidence there or what’s your instincts telling you about that?

    Izzy 10:05

    You know, I never really thought about how it could be linked to that, obviously, it kind of started off with that, but really minor. And I guess it was the exams, which was stressed, but then that would have been really stressful as well. So probably it was just a combination of things, really, I definitely put the, it’s all sort of colitis, I put that down to stress 100%.

    Bill 10:26

    Your levels of stress would have been more dramatic than regular stress in that if you were just studying for your exams, that’s a certain level of stress. But if you’re dealing with this other incident, and then that on top of it, it’s pretty understandable that somebody of your age 17 hasn’t got a lot of resources to work out what’s going on in their mind in their body and take big action.

    Cerebral Venous Sinus Thrombosis

    Bill 10:50

    Not only a 17-year-old hasn’t got those resources, most adults don’t have those resources. And it’s understandable that you would find yourself in this situation. So that led to dehydration which led to a cerebral venous sinus thrombosis and a hemorrhage. And that’s a lot of words. Tell me about what that is?

    Izzy 11:13

    Yes, so what happened is sort of the wrong time of dehydration it led to see, when I thought of a blood clot in the brain, I was thought of just one small thing, taking a blood vessel. But when I’ve seen my scans, it was kind of spread all around. And that’s I think that’s what a venous sinus thrombosis is. And how that led to the hemorrhage, we think, is that it can cause sort of like a build pressure in the blood vessels become leaky. And so yeah, it was it was the colitis that ultimately led to the stroke.

    Bill 11:48

    So how did you present what were the symptoms? How was it obvious that you were having this neurological event? What was going on?

    Izzy 12:00

    It wasn’t that obvious at first, obviously, when I was not in hospital, I just had the headache. And I think because of my age, doctors said oh it’s sinus problems. It’s this it’s that just wasn’t really taken seriously.

    Izzy 12:13

    And then it was when I actually went into hospital I was taken by ambulance. And at this point, I was just I only had the pain, I had absolutely no other symptoms. But I did start to get pins and needles in my right arm didn’t think anything of it. Because I was holding my mom’s hand in the ambulance, I thought it was just from holding my hand up.

    Izzy 12:31

    And then I was taken for an X ray. And I was getting onto the extra bed that my right side just went completely heavy. And I was trying to pick my leg up with my hand didn’t move and it just felt like a like a bag of bricks. I was just like, I can’t move my leg.

    Izzy 12:47

    And I started screaming out and I was the only person in the room I started screaming out, I can’t move my leg. It’s just as like a movie. When I play it back in my head. I just started to like, tip off the bed, feel everything hit the floor, I could see the lady sort of running back towards me.

    Izzy 13:03

    And then my head hits the floor and everything just goes black. And when I woke up well what an extra member is being in a room with my parents. And at this point, I couldn’t move my right side. But I had no idea because I was just like lying in bed. No idea what’s just happened.

    Izzy 13:19

    I was quite happy at this point, you know, I was just like delusional. And I couldn’t move my right side. And my mom said I was kind of shuffling around on the bed. She had no clue why they had no clue, I was like paralyzed on the right side. I had no clue. And it wasn’t I guess until I maybe tried to have a drink of water or something that we actually realized what was going on.

    Bill 13:40

    Oh, what a crazy time for everybody, especially you what’s it like when you wake up and you realize what’s going on and what had happened to you? When was the first time you knew that what had happened to you was quite serious. And now there’s, you know, there’s a recovery that you’re going to have to start and go on or what was that like? What’s that all about?

    Izzy 14:04

    It’s really weird about that first day, I know that I think my auntie and my sister came to see me. And I couldn’t move this side. But I started to get movement in my fingers and toes.

    Izzy 14:15

    And I just was kind of like accepting it. Like I wasn’t questioning why can I not move. I was just like. But look how good this is that I can move these. And then the next day I woke up and I was completely paralyzed again.

    Izzy 14:28

    And that was when sort of the longer recovery started. But I don’t think there was a single point that I thought at that point anywhere that I was I called this is worrying. I can’t move. I just sort of did what they told me to do and went with it.

    Izzy 14:43

    And I just didn’t really question it. Which is weird looking back because I was definitely frightened. But I think I was more frightened about the fact I had something going on with my head and I could go at any second than I was about the paralysis.

    Intro 14:56

    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 15:13

    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 15:36

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

    Bill 15:59

    Not overthinking it by the sound of things. You were just going with it.

    Izzy 16:02

    Yeah. Which is weird, because I should have been very more worried than I was definitely that side for me came more when I came out of hospital and looked back and realized and realized how different my future was going to be. Because I think when I was in hospital, I couldn’t quite comprehend it. I thought I’ll stay here. I’ll do what they tell me to do. I’ll get out and then I’ll be back to normal, that’s what I thought.

    Bill 16:27

    But how long has it been since you were “back to normal?”

    Izzy 16:32

    Well, I mean, I came out of hospital. And I could walk with it. And I was using a wheelchair. And for longer distances. But back to normal, I think I realized doesn’t, it doesn’t happen.

    Bill 16:46

    Yeah, there isn’t really a normal after stroke is it? It’s just dealing with whatever you’ve been left with, and then constantly trying to overcome and get better and better so that you are not impacted so much by the condition that you’re left with.

    Bill 17:02

    But there isn’t going back to what it was like before that it just doesn’t seem to happen for anybody that I’ve met, it improves and symptoms get less. And sometimes, for some people, they ease-off, and they’re not so debilitating.

    Bill 17:18

    But most people that I’ve spoken to about stroke, still say to me that, you know, after 10 15 20 30 years, they still consider themselves a stroke survivor, and they’re still recovering from it or trying to overcome an aspect of it.

    Bill 17:31

    And a lot of people go back to living full and normal lives. But your life was put on hold literally, because of this episode. How did you go at your exams? Did you manage to get through your exams before the stroke or not?

    Izzy 17:48

    And I think yeah, I did I sat them. Obviously I was really ill when I did sit them and cannot remember how I did at all? Probably not very well. And then what happened when I came out of hospital? Well, one of the first days I was in hospital, I said to my sister, can you get me my books and things because and start revising I’ve got exams coming up.

    Izzy 18:10

    And then it was when I came out of hospital and I went to a local brain recovery charity. And they said to me, no, you’re not doing any exams or any hard cognitive work for at least six months. And so that was when I realized I was gonna have to take that year off college and go back the next year.

    Izzy 18:29

    And so that was what I did. And I did sit them in the end, I sat them in 2019. So it was a year after I would have sat them. And I had to change my plan as well. I wanted to do medicine. But I ended up doing biomedicine, because I just know that I wouldn’t have been able to cope with that the stress of doing medicine, after going through all of that.

    Bill 18:49

    Next level amount of study and all the issues that are associated with the pressure of doing well in those exams, because it’s such a difficult industry to get into. And fair enough. So you did biomedicine and how did you go? Did you end up achieving the marks that you needed and get through?

    Izzy 19:08

    Yeah, did I ended up doing better than I thought to be honest. Because what happened was in that that 2018 was really difficult. I sort of felt like I didn’t have a purpose for a long time I was in that early stage of recovery where everything’s really confusing. And then in the September it was like our family, I’ve got college like I’ve got something that I can do.

    Izzy 19:28

    And I just put my absolute all into it. And because of the brain injury, I can struggle a lot lot more with my memory, I used to be quite naturally just struggle to get the grades, whereas now I have to really work hard for them. And so I just basically locked myself in a room for a year with like flashcards and stuff like that, and I came out with and three A’s and a B.

    Izzy 19:49

    Which was enough to get into the well more than enough to get into the biomedicine and I was just so pleased with it. Because I think a lot of people really doubted that I would get to where I need to speak and get those grades after what happened.

    Young Stroke Survivor

    Bill 20:02

    Fair enough that they had those doubts, I imagined that they just doubts from concern for you. And they didn’t want you to to overdo it and make yourself further unwell. Did you struggle with fatigue with issues like that concentrating? And then did you see those as you got better and better at studying and brought yourself into that did, did they ease off or were you constantly going through that same struggle for the entire time that you were studying?

    Izzy 20:31

    And I think for me, the fatigue was definitely not as worse when I was in hospital, and then coming out like that first six months, which is why I’m really glad now that they told me not to do anything for six months.

    Izzy 20:43

    Because I feel like it gave my brain a lot of chance to heal. And because when I first came out of hospital, I would have say, like a walk for an appointment or just like a 10 minute appointment, and go in there waking up getting dressed, having a shower, go in there in the car, having the appointment and be asleep in the car on the way home.

    Izzy 21:01

    And and I would sleep most of the day, I would have so many naps. And it became normal after a while just to sort of schedule in these naps not to do too much in a day. And then, like over the past three, three and a half years, I’ve just sort of built up my sort of scene where my tolerance is.

    Izzy 21:21

    And then when I found it, I just stick there, because I think I used to try and fight it a lot. Because obviously I’m young, my friends are going out and I want to be doing all those things. And I can’t do those things, just not to the amount that they also do them because it just end badly basically.

    Bill 21:36

    I love that what you said about you’ve discovered your tolerance, and you go there and then you don’t go beyond that, that’s a really smart thing to do. Because there’s no point going beyond, I used to find myself when I’d go beyond my tolerance, the next day would be terrible, it would be a ride-off, which meant that I kind of had fun. And then I would regret it the next day, and maybe the day after that.

    Bill 21:56

    And then it wasn’t worth going through the pushing through the tolerance and then dealing with the aftermath. So at the beginning I very rarely did I go out beyond say 10 or 11 o’clock. And I just couldn’t I was falling asleep on the couch, I could feel wherever we were, for example, even if we were at dinner, I could feel my left side really starting to ache and hurt.

    Bill 22:18

    And it would be really difficult to walk. So I would wind up my wife as soon as we could to get home so that I could rest. And that meant that I had to say to people look, I’m going home early, and they just had to deal with it. Not that they were giving me a hard time for leaving early.

    Bill 22:34

    But you could tell they wanted us to be there. And we couldn’t be there. And we just couldn’t explain it in any other way other than I’m really tired. And I’m going to go home and rest. So that’s what we did as well. And to be honest, it’s not what I would expect from a younger person like you now, I sound like an old man.

    Bill 22:55

    But most of the younger teenage people. And if I remember back, you know, in my time, there wouldn’t have been almost anything, stop me from doing the things that I had to do go out with my friends catch up and do all that type of thing. And one of the things I think I would not have done was stopped drinking alcohol. Did you find yourself drinking alcohol? Or did you stop? What was that experience like?

    Izzy 23:21

    And so I wasn’t allowed to drink alcohol for two years. And I just turned 18 about a month after my stroke. And that means we’re allowed to talk out to nightclubs and stuff here and drink. And I didn’t drink I stuck to that I didn’t think I drank until maybe my was it I think I drank on the results day when I got my exam results.

    Izzy 23:41

    And then I started drinking when I went to uni, which was about two years after. And that was just because I was just terrified of something happening again. I didn’t want to put anything going on up here at risk. And so yeah, so I did stick to it. Minus about maybe two months.

    Drinking Alcohol After Stroke

    Bill 23:59

    And then how did you feel afterwards? Did alcohol cause any issues? any concerns about that you might be triggering something off in your head because I know that when I drink now, even nearly nine years yeah, it makes me feel like I’m having another stroke like the left side goes numb again.

    Bill 24:17

    And it’s no fun. I can’t stand properly. I can’t walk properly. So there’s no point in really doing it and if I do, I’ll make sure that it’s at dinner with a meal and it’s maybe one drink over many hours. What’s it like for you when you drink?

    Izzy 24:34

    It really depends on the environment but at first it definitely did cause a lot of problems. so it was when I started going to uni obviously typical uni student drinking and just trying to keep up with everyone because I’ve been waiting for this for so long, like an extra year to go to uni I wanted it to be the experience that I had in my head.

    Izzy 24:55

    And so I was going out and drinking that you know keeping up With all these new people that I’ve met, and but then there was a couple of times where I’d get home and, and I’ll have no recollection, it wasn’t that I was drunk, because I didn’t need to drink a lot. I don’t know about you, but I always feel a bit drunk anyway after my stroke, everything’s always a bit thingy anyway.

    Izzy 25:17

    And so I didn’t necessarily drink a lot, but it would cause what we thought were actually more seizures because I would just kind of wake up somewhere and be like, how, you know, sort of like as if I’m passed out or something, and have like a headache, which, fair enough people say it could have been hangover, but I felt you know, you have that like feeling, or something has happened here.

    Izzy 25:39

    And so we spoke to the neurologist about it. And he said, the things that are probably triggering your seizures is lack of sleep, the alcohol, and sort of together especially, they’re going to be really bad for you, like different people have different triggers. And that was what they were for me.

    Izzy 25:54

    So now I just really watch it. I think, obviously, nightclubs have not been open here. But when they do I would just be careful with the amount I drink and make sure I’m going out with people that know me and kind of watch out for signs of anything happening.

    Bill 26:08

    Yeah, good move. I always also feel kind of drunk all the time. And that’s, that impacts my balance, and it impacts all sorts of things. And then, as a result of that, drinking makes it next level, and I’m a cheap date. You know, I’m just a one drink wonder. What was the hardest thing for you to go through after the stroke?

    Bill 26:31

    Because I imagine at your age, not only are you putting your life on hold, but there’s a lot of other things going on? In your mind? Did you do the whole? Oh, my God, this could be it. Have you contemplated that? Or is that something that’s not in your head? What has been the hardest thing for you?

    Izzy 26:50

    What do you mean by this could be it? What do you mean by that? Sorry.

    Bill 26:53

    As in that this could seriously impact your life. And you could pass away? Did you have that conversation with yourself?

    Izzy 27:01

    I didn’t realize how serious it was definitely in the very, very start. Just because I think I didn’t have that, like awareness. I wasn’t like kind of I was conscious, but not really with it. But it was maybe about a week instead of being in hospital. When I googled and chances of surviving a brain hemorrhage or something, I saw the 50/50.

    Izzy 27:23

    And at this point, even though was set up in bed and talking and laughing, and it was still very likely neurosurgeons were on standby was still very, like she can go any second kind of thing. And I didn’t think it hit me until I saw it there on my screen. And I was like that’s scary.

    Izzy 27:41

    And, and then that was when the thing with my head and sort of our to get scared to even for someone to even touch my head. Because I thought that someone touching my head would set something off. And I got really obsessed with that. But I think the hardest thing, probably just stem from that is more, I feel like you’ve got your physical, your cognitive and then your mental recovery.

    Izzy 28:02

    And I think for me, it was definitely the mental side of it, which sort of stems from that I had a lot of anxiety around my health, a lot of anxiety in general, because of Manchester and the stroke, I just always thought something bad was going to happen.

    Izzy 28:15

    And then with body image as well. And I struggled quite a lot with that, which I don’t know if that’s something you had. I was wondering about this, because I feel like it’s not directly people speak about a lot. And if it’s just my age, and you know, the fact that I’m a young girl, I don’t know.

    Bill 28:29

    Tell me about that body image thing, what kind of issues around that did you have? And how do you think it was related to what happened to your brain?

    Drug Side Effects

    Izzy 28:38

    So after my stroke, I was on obviously, I’d lost a lot of weight with the colitis. And then I was on steroids, I was on weight gain and drinks, obviously in bed paralyzed can’t really get off into a class or anything. So I gained a lot of weight, not necessarily loads of weight, but just sort of you get the hamster cheeks with the steroids.

    Izzy 29:03

    And I did get some negative comments from people that weren’t really great in my recovery, and they’re not in my life anymore. I didn’t realize you don’t really see yourself changing. And now I look back and I was like Oh, is that what I look like? Like I don’t recognize my face anymore.

    Izzy 29:21

    You know, seeing pictures of yourself and friends and you’re like, Is that me? sort of thing. And then I just got this, I’ve just got this image in my head all the time of sort of my post-stroke self. And it’s like, it was kind of like for a long time no matter how much I watch my food or my exercise or anything. I would just always see that person in my head and it was like I could never do enough to sort of get away from it. And so I was really hard on myself for quite a long time but I’m doing a lot better with that now.

    Bill 29:52

    Yeah, good on you look it is an issue for all sorts of people and I’m not sure if you have any ongoing physical this abilities that is obvious that you’ve had a stroke I don’t. But when I was, my stroke happened when I was 37. So I had three bleeds in the brain and then brain surgery, and for the first bleed they put me on dexamethasone, the steroid to decrease inflammation in the brain.

    Bill 30:15

    And that did exactly to me what it did to you. And let me tell you, I wasn’t happy about it, because I felt like I had lost control of my body. And it wasn’t that that was my main issue in life. My main issue in life was that my head was bleeding. But I figured that if I’ve got to be on this medication for longer than, you know, a few months or whatever, I’m going to be seriously overweight.

    Izzy 30:37

    I was on it dexamethasone I was on as well.

    Bill 30:40

    Yeah, right dexamethasone, and it’s a really good drug. It does a lot of things, right. But what it does also is it put on eight kilograms, or 17 pound in literally three weeks, and none of my clothes fit. And it made me have hallucinations, it made me feel like my skin was crawling, I couldn’t sleep. It made me eat hours a day, seven days a week, I could not stop eating.

    Bill 31:05

    And it was a very difficult day, one day when I went to buy new clothes, new t shirts, and everything. And none of my clothes fit literally in three weeks, I had to go buy new clothes. It was such a devastating experience. But what it did for the first time is it made me realize that there’s other people around us who are struggling with weight issues and body image issues.

    Bill 31:28

    And 99.9% of them won’t be happy about that. And there might be so many reasons why they are at that weight. Whether it’s because of bad eating habits or whatever, I think we’re all the same when we put on weight that we don’t want to have. It’s not something that we’re happy with.

    Bill 31:47

    And somebody who is overweight, for say, let’s say nutritional issues, might even feel that they’re overweight, is that whole situation is out of their control. And I felt just like anybody else who had ever spoken to who was overweight and feeling bad about themselves, I felt exactly the same way.

    Bill 32:04

    So it inspired me though, to find out how I can decrease inflammation in my body without drugs, not that I was going to stop taking them if the doctors told me that I must. But I did everything I could to support reducing inflammation in my own body.

    Bill 32:20

    And as a result of that I went to I went on a really strict diet regime and got rid of all the inflammatory foods out of my diet and went back to basics, you know, steak and three vege, and a whole bunch of sellers and some fruit and all that kind of stuff, no dairy, no caffeine, no alcohol, no sugar.

    Bill 32:39

    And that really helped me to feel like I had some control back in my life, it wasn’t an easy thing to do. And I didn’t do it all. In a short amount of time I took one what I consider inflammatory foods out of my diet. Slowly, every few months or so every time I ramped up. And I was able to feel comfortable to try and take the next one out.

    Bill 33:02

    But the main one that I took out that a lot of stroke survivors talk about is gluten and bread. Because that one increases the fatigue after you eat it. So people eat it, they get a real spurt of energy, and then the body releases insulin. And then it decreases that energy very dramatically. And then the brain thinks, oh my gosh, we’re running out of energy, and it starts to go into a shutdown mode and you get fatigued then you’ve got to sleep it off.

    Bill 33:31

    That was the cycle that I was on with dexamethasone. And that’s when I was eating all day, every day, my mom would make me a bowl of pasta. My wife would be making me past everybody would be making pasta, and I’d be eating maybe 4000 calories a day where before I was eating less than 2000 a day. So absolutely I understand how you experienced body image issues.

    Bill 33:55

    And yes, it’s partly tied to your age at the time, of course, right. But like I said to you every person that I’ve spoken to has had a stroke, who has a physical disability, has now had that issue and many stroke survivors who I’ve interviewed on the podcast will say you know, I wonder you know, what’s my partner gonna think of me now that I look like this or what other people gonna say.

    Bill 34:18

    And it’s a terrible place to have to find yourself. But what I feel like is, if other people are judging you for that it says more about them than it says about you. It means that they can’t grasp the concept of not being well and they’re lucky that I haven’t got to that point yet. So you learned some lessons really early in life and I wish you didn’t have to learn them like that, but it sounds like you had no choice did you?

    Izzy 34:49

    No and it’s weird to say because I’m not. I’m not glad that the stroke happened. But because I do always wonder what I would have been like, if it hadn’t happened and what life would have been like. But I am really grateful for all the things that I’ve learned.

    Better After The Stroke – Izzy Hirst

    Izzy 35:07

    Because I do think I’m a better person for it, not for the stroke, because for a long time that put me in just really bad place mentally and feeling sorry for myself stuck in the same place, not moving forward. But then when I finally kind of accepted it, and I did start to learn and grow, that was when I really did i do think I’ve become a better person for it. Yeah, definitely.

    Bill 35:33

    I said the same thing. And I’ve got to that point where Lauren years out. And before that, I say, you know, the strikes the best thing that ever happened to me, and people, some kind of reconcile that. And I understand when people can’t understand how somebody could say that, but it is my live with physical disability that you can’t see every day.

    Bill 35:53

    My left side is weak and numb, and it bothers me and my balance is an issue and my fatigue catches up with me sometimes, it’s the best thing that ever happened to me, I was a complete moron before the stroke. And I’m not talking about my personality. I’m not talking about how I, how I treated people and how I behaved. I mostly was a good guy, but I was stupid.

    Bill 36:14

    I had no idea what life was about, even at 37. And, I had to go on this. study this crash course to study to work out what the hell am I doing? What’s the point of life? What am I here for? What what am I trying to achieve? And I’m here to answer all the questions, but I’m well on the way to understanding that, like, it’s not really about me, this whole life thing.

    Bill 36:41

    It’s about other people. It’s about making a difference. It’s about sharing experiences. It’s about teaching other people what it is that we know that’s important, that’s going to help them if they are so interested to find out. And, and it’s also about being the best version of yourself that you can be and constantly strive for that constantly strive to be better than I was yesterday.

    Bill 37:06

    And that was not me, I wasn’t that guy at 37. I had no idea who I was. And I’ve learned a lot. So that’s why I do the podcast now. And it’s helped me find my purpose, which is a real thing that people struggle with after stroke. It’s like, what’s the point of life? What is my purpose? And it didn’t come to me day one, when when I woke up, you know, it took me three or four years to struggle through that.

    Bill 37:32

    And it didn’t even come to me after I started the podcast, it came to me Well, after that when I realized the podcast is making a difference in helping people. It’s kind of like, Oh, my gosh, this might have something to do with my purpose, why I’m on this planet, and how the podcast is making a difference. So that’s kind of what I got out of it.

    Bill 37:55

    Now. You spoke about that too. A little earlier, you felt like at the beginning of the recovery, there was no purpose. Have you shifted? Do you have a purpose? Are you kind of finding it? And it’s okay, if you don’t, but it’d be lovely to hear what a young person’s purpose in life might be?

    Izzy 38:15

    Yeah, I mean, I think I’ve found maybe not the purpose. But I found reasons, you know, purposes since then. I think when I first came out, because I’ve made that physical and cognitive, not necessarily the greatest forms of recovery, but definitely physically Yeah, I’m the same as you, I look fine.

    Izzy 38:36

    But I’m not necessarily you’ve got things going on that people don’t see. But because I didn’t, I wasn’t working, wasn’t at college wasn’t driving, I just felt, you know, and you feel really alone when you don’t have a purpose because you need one, that’s what we all need one.

    Izzy 38:52

    But now kind of similar to you. I do a lot of work with the local brain recovery charity, I have my Instagram page, I’m doing my university course I’m really loving, just connecting with other survivors. And I’ve started volunteering as well at the hospital on the rehab ward.

    Izzy 39:10

    And literally only done one shift so far, but I really enjoyed that. And, I think obviously, it’s great because in the future, that’s what I want to go into is working in a hospital. but I think, obviously, I wanted to be a doctor before. I really know why I wanted to be a doctor. I didn’t have reasons why it was what I wanted to do.

    Izzy 39:30

    Whereas now I’m like, No, I’ve been there. I’ve been on the other side. And I’m not going to be a doctor anymore. But I can certainly work in hospital and make I think make a difference and help people and connect with people because I feel like that’s what you want when you’re in there.

    Izzy 39:46

    Because all the time when you go to appointments and things it’s like people are speaking to you. And it’s as if this isn’t a really big day in your life and this appointment is not something massive that you’ve been waiting for for months. You It’s just another day at their job.

    Izzy 40:01

    Whereas I’d love to be able to sort of connect with people in the future, and make them feel like you’re being like listened to. And I understand the symptoms that you’re going through. And I understand that it’s impacting your life. Do you know what I mean? Like everything I’m doing now is to help me eventually get to that point.

    Bill 40:20

    Yeah, it’s weird to say this, but there’s nothing better than another doctor who’s had a stroke. Because they’re the only people who get it. And there’s few of them. And I understand that, and I wish there was none, to be honest. But when you go into a hospital, and you deal with somebody who’s been on the other side, and understands.

    Bill 40:39

    That makes just a massive difference, the way that they go about explaining things, the way that they go about understanding what you’re struggling with. So it’s really amazing to see that, you know, one of the people who I looked at for some information and trying to get a better understanding of what was going on in the medical fraternity that I’ve had, of people who are helping stroke survivors was a gentleman who I interviewed on the podcast, who was a psychologist, who had a stroke.

    Bill 41:14

    So what that resulted in is that he’s several years like me, I think he’s maybe eight or nine years beyond the stroke, and he’s learnt a lot. And he wrote a book that was designed to give an insight into what it’s like being a stroke survivor, so that now, other counselors, other psychologists are reading this book, and applying that learning into their counseling sessions.

    Bill 41:42

    So that there’s this different level of understanding now where there wasn’t before so that was a really good thing. And then the other person was Dr. Jill Bolte Taylor, who was one of the first videos I ever saw, which was, she was a neuroscientist, a researcher, she was researching the brain because her brother had schizophrenia, when they were kids, and she was just trying to understand then I suppose help her brother and her family.

    Bill 42:09

    And then she had a stroke. And she had a conversation about what it was like as a clinician, or as a neuroscientist, to experience her own stroke. And she spoke about this weird situation where she was observing the stroke happening as a clinician, while it was happening to her as well.

    Bill 42:29

    It was the craziest thing. And I got a lot out of connecting to people like that and learning from Dr. Jill Bolte Taylor through her book, and also through my guest on the podcast, and I’ll get his name in a moment, who shared this amazing version of stroke from the eyes of a psychologist, which when I went to my psychologist, after the stroke, I couldn’t get to that point where I was able to explain exactly what was going on.

    Bill 43:01

    And I knew that she knew she was amazing, but she just didn’t know that what I was saying to that extent, right, it didn’t matter much, but it mattered. And the person that psychologists name was David Roland, and he wrote a book, recently, his second book, The Power Of Suffering.

    Bill 43:18

    And he also wrote another book, his first book was called How I Rescued My Brain. And his second book was called the power of suffering. So when I met David on Instagram, I was, and then I chased him up, and then I followed him. And then I asked him to be on the podcast, I was so amazed that somebody had been a psychologist, and now they’ve had a stroke, and they’ve put that experience to work to make a difference to stroke survivors.

    Bill 43:48

    So I get what you’re saying, like, it makes a big difference, you’re going to be an amazing person in a hospital, especially if you work anyway, in some kind of a neurological environment or in a ward like that, or in a stroke ward. I think that’s one of the beautiful things of having people with experience in that space. And of course, I’d rather you never had that experience. But since you’ve had it, you might as well make the most of it.

    Izzy 44:14

    Yeah. No, you never think about people, they’re professionals. You can see doctors a bit invincible, or at least I do, you don’t think really about the things that they might have experienced. And actually they could have, had a stroke. I don’t think I’ve ever met any of my health care professionals who have gone through something like that, but it would have been obviously not nice for them to have gone through that but nice for someone in the room to have kind of understood a bit deeper.

    Bill 44:42

    Nobody ever shared with me that they went through something similar or that they hurt their toe or anything like that. You never hear about them. So they do put on this brave face of it’s not about them. They just make it about you in some way. Because they’re trying to get you better and get you out of hospital.

    Bill 45:00

    But I think that’ll bring the thing that doctors are missing. And it’ll bring that human touch, you know, that little bit of additional layer of support without going too far, they don’t really need to do too much to say, I’ve been in your shoes, or I know somebody who’s been in your shoes, and I think that’ll make it better.

    The Recovery After A Stroke

    Bill 45:19

    But yeah, that’s okay. I’m alright with them doing what they do, they did a really good job with me, they fixed me up, they got me home. And then there’s a point where the recoveries then the responsibility for that has to be on us. So you seem like somebody who’s really taking responsibility for how you’re going to recover? Is that how you’ve always been? Or is this just something that you’ve been really motivated about?

    Izzy 45:45

    And I’ve always been quite an independent person since before the stroke. And, and then in terms of taking responsibility for my recovery, I think I kind of ignored it for the first six months, because I was still kind of a bit in denial. And I was trying to keep up with everyone.

    Izzy 46:05

    And kind of just, I was just really not, I was just not happy for a long time. And when you’re not happy, what you should do is, is change something. But I was doing the complete opposite. I was like resisting any change that wanted to happen any of that.

    Izzy 46:21

    I was like instead of moving forward with my new self, I was looking back on my old self and just comparing and liking I want to be doing that. And I would have been doing this right now we’re going to uni right now.

    Izzy 46:32

    And just always kind of comparing, and then I think what I’ve kind of learned without realizing I was learning it was if you didn’t like the situation that you were in, it doesn’t matter what’s happened, the three things that you can do I really like this saying. The three things that you can do, you can either leave it, change it or accept it.

    Izzy 46:55

    Obviously, after you’ve had a stroke, you can’t change it, it’s happened, you can’t leave it because you live in it, there’s only one thing that you can do if you want to move forward. And that’s to accept it. And it was when I started to accept it, especially when I went back to college because I had a new purpose, I felt a lot better for that.

    Izzy 47:14

    And then especially in the past six months only, and when I started doing the therapy and stuff, and I really started to accept it that sometimes we’re not going to get all the answers. And these things just happen. And if I can’t change our car, leave it. I’m in it. So I might as well stick with it and do the best I can.

    Izzy 47:31

    And it was when that kind of clicked that I started to really take responsibility and be like, these are the deficits I have, I’m going to have them but I can at least maximize my own potential and do what I can with them. Do you know what I mean?

    Bill 47:47

    Yeah, I completely get it. Because I think I accepted it like right at the beginning. When I woke up from surgery, and I couldn’t walk. I didn’t know if I could walk again, I didn’t know if I was going to be able to walk in, I had no idea what that was going to end up looking like.

    Bill 48:05

    But I just accepted everything I just didn’t like it. I wasn’t happy about it. I wasn’t keen on being there and trying to learn how to walk again. But I just accepted it. And I felt like that is my mind to a point it decreased some of the stress. And therefore it allowed me to put my energy into other things like recovery, and like actually walking as best as I could.

    Bill 48:29

    I just didn’t do the whole I didn’t feel the I didn’t do the Why me at all. I never ever did the Why me I just got on with the job. And I suppose I’ve done the Why me from time to time in the past on other things, but I’ve never done it with this. And one of my coaches anyway, maybe it’s because up until 37, I had been going to counseling since about the age of 25.

    Bill 48:53

    And I’ve been going to coaching and all sorts of things. There’s definitely a lot of things I wasn’t happy about. And that’s that thing I was talking about earlier. Like I wasn’t completely satisfied with my life. But I wasn’t smart enough to understand what to do different. I didn’t do the thing that you said which was change something and do something different.

    Bill 49:11

    I did the same thing whinged about it forever, hated it forever, but I didn’t really achieve anything. And one of my coaches actually says, and I’m sure this is you know, some super guru that says this somewhere. She said, you know, what you resist persists. And I resisted everything up until that point.

    Bill 49:30

    And it persisted. All the things I resisted change and change was telling me man, you’ve got to change something, you have to do something different. If you don’t do something different. You’re going to suffer and struggle with this and it’s going to annoy you for the rest of your life. But no matter how much he told me, I didn’t want to hear it right?

    Bill 49:48

    And from a lot of the people that I coach at the moment, you know some of the people that our coaches struggle with acceptance and one of my one of the strengths of ours I’m catching at the moment said this, I won’t reveal his name. And I won’t reveal any of the other issues.

    Bill 50:04

    But the challenge that he has is with his leg similar to my leg, but his leg feels numb in just one position in just one part of his leg. Okay, so it’s not his entire leg. And it feels strange when he runs. So I totally understand what that’s like. And in one of his comments, you know, he said that he refuses to have it feel like of that for the rest of his life.

    Bill 50:31

    And he hasn’t come to terms with the fact that it’s not up to him as to whether it feels like that for the rest of his life. He just may feel like that for the rest of his life. And he’s struggling to believe that somebody out there can’t fix it. And I’m like, no they can’t do everything yet. Like, doctors cannot fix everything.

    Bill 50:51

    However, they did save your life. That’s a pretty big deal. You would think that that’s a blessing. And I’m not saying that this person doesn’t sometimes go to that place where he’s blessed. But he’s definitely putting a lot more time into the feeling in his foot. He was somebody who was up and about much sooner than most people I’ve ever heard.

    Bill 51:14

    And, sometimes he just struggles to go through that place. And I feel like the more he stays there, and it’s his journey, I’m just there to guide him and support him. It’s his journey. But the longer he stays there, the more he’s going to struggle, the more he’s going to waste energy on this part of his recovery. And the less he is going to be able to focus on things that are more important, because I’m sure there are things that are more important than his foot.

    Izzy 51:43

    Yeah. What you said about the things that, like the blessings, and then I guess the things that we don’t like, and we don’t want to accept, the kind of is a skill, and I guess, maybe early on in recovery, you’ve got a lot on this side. And not a lot on this side. It’s kind of like this. And as you go through, you need to be grateful for more. And these things you realize you can’t change and it one day tips. And that’s just the point that you kind of want every survivor to get to.

    Bill 52:15

    If you could get all the stroke, survivors to get to that point where they tip over to the point of more gratitude than anger, more gratitude than resentment, more gratitude than comparing, you know that certainly does help. And there’s a time for anger. Absolutely. There’s a time for comparing, there’s a time for all those things, I think you have to go through every part of the recovery.

    Bill 52:38

    It’s just how long do you want to stay there, it’s the way that I saw it, I didn’t really want to stay in those unproductive places for too long, because I at 37 realize that life can be very short, which meant that I might be spending the rest of my life doing all that junk, and not living my life.

    Bill 52:56

    And then also, what kind of an example Am I setting for my kids who hopefully won’t go through anything serious or dramatic for a long time? But if they do, and the only example that they’ve got to go on is somebody who’s angry and mad and resentful all the time, while then how is that going to support them in having an alternate view?

    Bill 53:20

    So yeah, it’s a really interesting conversation. It’s really interesting to have this conversation with somebody who was 17 at the time of the stroke, and is now 21. And you’re talking with somebody with a lot more wisdom than most other 17 and 21 year olds, of course, you know, you know what I mean?

    Bill 53:38

    They haven’t been where you’ve been, and they don’t have that kind of wisdom. And that’s kind of a good thing. But there’s also something lovely. When I hear you talk with such I’m not sure what the word is, it’s wisdom, it’s definitely wisdom. You know.

    Izzy 53:57

    I don’t know if I’ll say I’m wise for a 21 year old, but that’s really nice. Thank you. I’ve learned some things at least I’m still learning.

    Bill 54:07

    Yeah, we all are, but you are wise. You’re wise in that aspect of life not saying that you’re, you know, the epitomy. But you’re on your way.

    Izzy 54:18

    Yeah. Not quite yet.

    Bill 54:21

    But you’re on your way. So how’s the rest of the family coping with all of this? Do you have siblings mum and dad like What’s all that like?

    Recovery Of Izzy Hirst With The Help Of Family

    Izzy 54:33

    Yes, so when I was in hospital, so my kind of close family immediate family was my mom dad, my sister and my auntie came to the hospital a lot. And she’s always one of the first people kind of on hand if something happens, but it kind of every day at hospital my mom would stay from morning till night and my dad no my dad would stay morning till night my mom would be there for me all through the night.

    Izzy 54:58

    So they really didn’t see each other for it was about a month I was in hospital and they were just kind of pass each other. But having them there, I just feel like that made such a difference to my recovery. And I wish it was something that everyone could have obviously because I was 17, I was allowed someone with me.

    Izzy 55:13

    And what it meant was that when I got to a point in my physio where I could kind of walk independently, maybe not the best walk back and do it. And I’ve gotten used to, you know, if I had a bit of rubbish on my desk at hospital, someone else would pick it up for me.

    Izzy 55:27

    Whereas my dad would be like, I’d be like, can you put this in the bed? And he’s like, no, you can do it, you can get off and do it. And he would make me do these little things. And he’d walk me up the corridor and back and things like that. And we would play games as well.

    Izzy 55:42

    So I’ll get my hand movement play like what’s the game, where you’ve got is it connects for and things like that. And all of that, I just think I didn’t realize it helped at the time, it just seemed like fun. But it did. And I wish that something that every survivor could have.

    Izzy 55:58

    Because it does make a difference. Having people with you 24/7, and then being able to help you move versus being lied in your bed waiting for one hour of physio. Do you know what I mean? But yeah, my family and my sister as well, obviously, she kind of kept everything together while my parents were coming back and forth. And she came to see me and yeah, everyone was really great. I’ve got a really good support network.

    Bill 56:23

    Yeah, lovely. What you said was interesting, I often found myself waiting for that one hour of rehab. And I was expected to just do nothing for the rest of that time. And I found that quite strange. And I didn’t, I was on YouTube, YouTubing, you know, you know, searching how neuroplasticity works and I was doing all that kind of stuff, but they were expecting you just to be there, watch the TV that’s in your room and not doing too much more than that.

    Bill 56:51

    And I found that quite bizarre, but I’m sure they’ve got other things to do. And that’s okay. Like, again, I just took responsibility on using that time productively, so I could learn about how to help myself get out of there quicker. And, that was a good approach now as a young girl, who was 17 and now couldn’t move half of her body. That would have been difficult going to the toilet, showering all that kind of stuff. How did that impact you? And your I’m not sure your emotional state or your mental state?

    Izzy 57:25

    Yes, and obviously, as well, I needed the toilet a lot because I still have the gastro stuff going on. So what would happen is I just had a call button. And every time I needed the toilet I would press it. But there’s a real urgency when you’ve got to stay close if you need to go, you just need to go.

    Izzy 57:44

    And I would get really stressed out because I’d be pressing this call button. And obviously you’ve got other jobs to do. But I’ll be pressing it and I’d get really angry. And they would come. And then I’d obviously be all smiles when they were in the room and I would have two people sort of lift me and put me I couldn’t walk to the bathroom and back. So that would just lift me onto there.

    Izzy 58:08

    And then to be washed. I think one time I just I got really upset and I was just like, I don’t feel clean. I just started crying Whilst this someone was in the room. And then these two health care professionals, I don’t know what who they were just came in, sort of took my gown off wash me didn’t say anything to me, dressed me.

    Izzy 58:31

    And I was like 17. And I was like what just happened? Like what just happened a week ago, I could walk and I was just a normal person. And now someone else is washing and dressing me. Yeah, it was really strange. I imagine you really went through quite similar.

    Bill 58:49

    So going to the toilet. I remember, straight out of surgery. I was laying waiting to go to rehab. So there was about three or four day delay before I went to a rehab facility. And I was waiting. And they asked you have you been after surgery have you moved your bowels yet?

    Bill 59:07

    And I said no. And I think it was day two or something like that. And what they do is they give you a laxative and they give you laxative day 1 and it hasn’t happened. Nothing’s happened, they give you laxative day 2, nothing’s happened.

    Bill 59:19

    And then you’ve got this buildup of stuff and you’ve got a build up of laxative. And then it happened. And I was sitting in the chair realizing in my bed realizing I’ve got to get to the toilet right now. And I did exactly what you did. I press the button, nobody was coming.

    Bill 59:33

    And I couldn’t use my left side. But the wheelchair was next to my bed. And I dragged myself off my bed. I dragged myself into the wheelchair, which was dangerous, but whatever. And I started pushing myself towards the toilet and just when I got to the toilet door, the nurses caught me or came in caught me and said to me, what are you doing?

    Bill 59:55

    You know, I and I said to him, listen, I had to go you ain’t here. What was I gonna do? There was two options either get myself to the toilet or you’re cleaning my bum for me.

    Izzy 1:00:07

    Oh my goodness that must’ve been really difficult?

    Bill 1:00:07

    It was tough, right? It was tough. And they started kind of laughing. And also they said, they appreciated the fact that I thought of them, which had nothing to do with them. You know, of course, I didn’t want that to be in that situation at all. But, we’re arguing now and we’re at the toilet door.

    Bill 1:00:12

    And I said to him, I just got to get to the toilet. Can you please help me up there? That helped me up onto the commode. Now, when I got there, I noticed they weren’t leaving. And I said to him, What are you guys doing? And they said, well we have to wait here because it’s too dangerous for you to be at the toilet on your own, you might fall.

    Bill 1:00:41

    And I said you must, you have to get out you need to leave. Because I’m not doing this with you here. There’s no chance and I’m busting and you’ve just got to get out and they wouldn’t leave. So eventually, I said to him I promise, I will not move. I will not try and get up. I won’t do any of that stuff. When I’m done. I will call you in.

    Bill 1:00:59

    But not while I’m not Now. No you can be here now. So they eventually left and I said just wait behind the door to please wait behind the door. they close the door. They’re way behind the door. All right. And as I said, I promised I did what I promised. And then I called them in. But then I was kind of trying to work out like what do you talk to somebody about when you’re on the toilet doing your thing and they’re in there watching you?

    Izzy 1:01:22

    Yeah, well, I had similar experiences, but I had just a curtain so I just had to put the curtain up. And but it was really funny because most of the time during the day, it would be my dad. And it would just be really funny to be honest. So we just jerk about it. Yeah, luckily, I didn’t have any like strangers watching me on the toilet.

    Bill 1:01:46

    And, of course, that never occurred to me until that moment that that was a possibility that that had to happen. Like that. And then it’s like, no, you’ve just caught me unprepared. And I can’t go through this right now. I haven’t worked it out in my head. how it’s supposed to go.

    Bill 1:02:02

    All I know is it can’t happen the way you’re saying. So it was quite stressful. And then I’ve talked, I’ve spoken to a lot of other stroke survivors who have been through exactly what we’ve been through and the left side, or the deficit on one side of their body was more dramatic.

    Bill 1:02:18

    And they had to deal with a lot more than that. You know, one of the ladies I spoke to Clodah Dunlop, she was locked in, and she wasn’t able to move anything other than her eyes. And there’s a number of people I’ve interviewed like that.

    Bill 1:02:31

    And Clodah was telling me that as a 30-year-old, you know, female, she really worried about her safety and her well being when she’s in a hospital and she can’t move and all these other people around her and she doesn’t know any of them.

    Bill 1:02:43

    And all she can do is blink her eyes and she can’t speak.

    Izzy 1:02:47

    That must be so scary.

    Bill 1:02:48

    So scary. And it’s, you know, super frustrating and traumatic, and I can understand, you know how that could leave an impression on people. So I take my hat off to everybody who’s been through that situation, and worse, and come out the other side now to talk about it.

    Future Plans Of Izzy Hirst

    Bill 1:03:08

    And to overcome and to move on. And I think you’re doing a really good job of that. What is the future? Looking like for you now? So I know you’re at uni, what year uni Are you in? And how soon do you hope to graduate? And what do you hope to try and get yourself a job in what field?

    Izzy 1:03:27

    Yeah, well, I just finished my second year. And, I got FS. So that was good. And so I’m going into my third year in September. And then I’ll also be applying for physicians associate and postgraduate.

    Izzy 1:03:44

    And that’ll be two years. So I’ve got another three years to go hopefully if all goes to plan. And then yeah, I’ll be working in hospitals and physician’s associates quite a new role here. I don’t know if it’s something where you are, but essentially you work underneath the doctors to help diagnose and treat.

    Izzy 1:04:01

    And hopefully they’ll get the powers to prescribe soon as well and do minor treatments and surgeries. So yeah, basically essentially following the route that I wanted to do still, but in a different way and under a different sort of role.

    Bill 1:04:16

    Okay, so kind of like a role where you’re reporting to a doctor and supporting them with their work.

    Izzy 1:04:22

    Yeah, yeah.

    Bill 1:04:23

    That’s beautiful. So you get to get really intimately involved with the patient and support them, but perhaps a bit a little bit more connected to them, than be at that level with a doctor is where they’re a little bit more disconnected. Does that sound right?

    Izzy 1:04:39

    Yeah, yeah, possibly might give more opportunity for that because you are working under them. So you’re the one that’s kind of going to the patient taking history doing the examination, things like that. You’re the one with the patient contact and then going back to them and check in, you know, does this sound right? And you’ve definitely got that patient contacts there, which is what I really want.

    Bill 1:05:04

    Your Instagram is beyond_a_brokenbrain. And I saw a couple of your posts. And that’s why I contacted you I saw your post where you were talking about the stages that you went through from the age of 17, to the age of 21. Now and how you’ve changed and evolved and moved on.

    Bill 1:05:25

    And that really was I think, an inspiring post, it’s really good to see. And that’s kind of the message that I’m trying to raise, it’s that message of we went through a really bad time, things were tough. We didn’t like it, it was a lot of things we had to learn and overcome.

    Bill 1:05:41

    And one of the challenges that some stroke survivors face early on is they hear me speak, who’s nine in so many years down the track, and they jump to the conclusion that oh, my God, like he’s a stroke survivor, and he’s perfect. I need to be like him, and I need to be like him really quickly.

    Bill 1:05:57

    And I really want to create an understanding of a path that people have to follow. It’s gonna take some time for some people, it’s gonna take longer than it will for others. What inspired you to put together that little bit of history for yourself?

    Izzy 1:06:17

    I think, because I would have quite liked to have seen that when I was in hospital. I remember, there’s a boy in my town, actually, he had a stroke, and hearing that he’d had a stroke and seeing what he was doing after. And that was like I’m not the only one someone else has been through this and look where he is now like there is hurt kind of thing, I think hurt, is really important now in recovery.

    Izzy 1:06:41

    And, yeah, but also, at the same time, like you said, you have to be quite careful with it. Because then people can be like, people will message me and say, oh, when did this? When did your arm start to move? When did your leg start to move. And it’s definitely it’s not the same for everyone, the way that things have happened for me, like everyone is different, every stroke is different. So you do have to kind of have a balance of these are the good part of my recovery, but also this these bad parts.

    Bill 1:07:09

    I think your instincts have guided you. Well, with regards to the way you go about things and what you’ve just described, did it serve as a bit of a reminder to you as well as to how far you’ve come? Did you look back on that? And go? Well, actually, I’ve come quite a long way.

    Izzy 1:07:24

    Yeah, definitely. I do like to look back, I have quite a few videos from when I was in hospital. And if I ever am feeling sort of doubting myself a bit or anything like that, I will look back, and I will remind myself, like no, actually, you’re doing really well you know what I mean?

    Bill 1:07:40

    Most of what you’re going to experience from now on is just general life. So the stroke survivors tend to have this thing. And I’m generalizing. So if you’re a stroke survivor, and you’re watching or listening, and this is not about you, that’s perfectly fine. But they did they tend to have this thing that you know, what they’re going through is unfamiliar, perhaps it’s got to do with the stroke.

    Bill 1:08:04

    But it’s, most of the time, it’s really not what I feel like is most people who are struggling with life, emotional problems, mental issues, all those issues tend to be there before the stroke. And the stroke kind of makes it a little bit more heightened, or it makes it a little bit more obvious because stroke has its own complications.

    Bill 1:08:27

    So I think my message to you is that what you’re going to experience from now one is life, just general life, you have your ups, you have your downs, you have your good days, bad days. But if you can have the attitude that you have, which is to look back, and then try and ask yourself, what’s good about this? Or what can I learn from this? Or how can I grow from this that’s going to really support you.

    Bill 1:08:50

    And if you’re in a tough time, and you’re feeling low, ask for help. And at the same time, when you’re in a tough time, and you’re feeling low, just know that it most likely will pass allow yourself to experience all the range of emotions, because they’re really important. All the emotions are telling you something, they are giving you information.

    Bill 1:09:11

    And you have to pay attention to that information and do something about that. When you’re feeling unwell. That’s information that’s feedback, something is not going right. And you need to pay attention to something and you need to take some action on something. Does that resonate? Does that ring a bell?

    Izzy 1:09:29

    Yeah, I think because especially with the colitis that’s ongoing. And I can tell if I’m letting myself get stressed out or upset about something, that would be a reminder. So in a weird way, I am grateful to have it because it’s like my biological thing. That’s like take a step back with what’s going on. But sometimes rather than noticing it up here first, like I’m feeling this way, I’ll get problems with my stomach. And that will make me think, oh, is there anything going on at the moment that I need to watch.

    Bill 1:09:59

    On that note. Thank you so much for being on the podcast. I really, really appreciate it. And thank you for sharing your story.

    Izzy 1:10:07

    Thank you for having me. It’s been lovely and I think it’s great what you’re doing as well. I think it’ll help a lot of people and that sort of scale that we talked about. I think you’ll help a lot of people get to that point. Yeah, I hope so.

    Bill 1:10:20

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

    Bill 1:10:37

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

    Bill 1:10:52

    I know for me It felt as if I was teaching myself a new language from scratch with no native speaker inside. If this sounds like you, I’m here to tell you that you are not alone. And there is a better way to navigate your recovery and rebuild a fulfilling life that you love.

    Bill 1:11:07

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

    Intro 1:11:35

    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 1:11:52

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

    Intro 1:12:15

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

    Intro 1:12:30

    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 1:12:43

    If you are experiencing a health emergency or things 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.

    Intro 1:13:00

    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 or follow that your own risk and we are not responsible for any information you find there.

    The post Young Stroke Survivor – Izzy Hirst appeared first on Recovery After Stroke.

    1 hr 15 min
  • How Neurofeedback Can Take Recovery To The Next Level – Louloua Smadi & Dr Lynette Louise

    Louloua Smadi is the author of the book from client to clinician a book about neurofeedback and her experience with how neurofeedback improved the lives of all the members in her family.

    Socials:

    instagram.com/louloua.seh/
    clienttoclinician.com/

    Highlights:

    02:17 Introduction

    06:52 Dr. Lynette Louise
    15:47 Fully Recovered
    19:10 Louloua Smadi
    24:10 Different Brain States
    31:21 Depression And Anxiety
    41:10 Recovery With The Family
    43:00 Neurofeedback
    52:18 The Seven Questions
    57:48 From Client To Clinician

    Transcription:

    Bill 0:00

    But there’s an emotional recovery, there’s a mental recovery, and a physical recovery. So you take a little bit of this and a little bit of that. And when I say I’m fully healed, I’ve done a lot of emotional work.

    Bill 0:11

    I’ve recovered in that space, more than the physical space and the space that I’ve recovered in more the emotional side is what has allowed me to take my stroke recovery to the point of saying, I’m fully healed even though I’m living with these things.

    Bill 0:25

    I’ve come to terms with the possibility that I might die tomorrow, I’ve come to terms with the possibility that my dad wasn’t actually terrible when I was a kid when he stopped me from doing something I shouldn’t be doing, that he did the best he could with the resources he had available to him at the time, you know.

    Bill 0:42

    So I’ve done a lot of that work, and dealing with the challenges that stroke creates. For me today, I’m not dealing with all the other unresolved challenges that I had in the past as well as my stroke recovery.

    Intro 0:58

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

    Bill 1:11

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

    Bill 1:23

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

    Bill 1:39

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

    Bill 1:58

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

    Introduction


    Bill 2:17
    Head to recoveryafterstroke.com To find out more after this podcast. But for now, let’s dive right into today’s episode. This is Episode 147. And my guests today are Louloua Smadi and Dr. Lynette Louise, who are both working to support people that have neurological conditions to thrive and move beyond the diagnosis with neurofeedback.

    Bill 2:44

    Louloua is also the author of the book From Client To Clinician, but for right now let’s dive right in to the show. Lynette Louise, aka The Brain Broad and Louloua Smadi. Welcome to the podcast.

    Louloua and Lynette 3:02

    Thank you for having us.

    Bill 3:04

    Well, this is a really cool opportunity to connect with some people who have had done a lot of work in the space of neurorehabilitation and supporting people with all sorts of different brain we’ll call them disorders.

    Bill 3:21

    And what I want to understand is the kind of work that you do and how that helps people. Now, I’ll give you a context. Before the conversation starts. The context is that I’ve had a stroke, three brain hemorrhages, brain surgery, I had to learn how to walk again, use my left arm again.

    Bill 3:40

    And what’s interesting is that I think I feel like and I talk about the fact that I’ve made a full recovery. But what that means for me is different for everybody else. And when I say I’ve made a full recovery, that means I live every day with left side numbness, sensory neuron issues, and fatigue some days, and overwhelm and all those issues in the head.

    Bill 4:06

    And a lot of the people that I speak to they can’t connect the dots when I say I’ve made a full recovery and then they hear me talk about my symptoms. They go that’s not possible. So Lynette, can I start by speaking with you about the kind of work that you do briefly? And how would you respond to what I said about my recovery?

    Lynette 4:30

    Well, first thing I would say is you never think in the same brain twice whether you had a stroke or not. You’re always changing whether you’re degenerating or you’re progressing and your brain’s healing whether you know, we’re always adjusting we have traumas, we have things that happen to us.

    Lynette 4:47

    We have pandemics we have you know we have stuff and so would someone emerging from this lockdown time then say they’re few I’m all way back to where I was, or would they say I’m someone new. And yet, I’m free again and healed again from this sort of locked down state.

    Lynette 5:11

    That’s true inside your brain to. So you can have a stroke, and go through a process of healing, and hit a place where you say, you know what, this is the new me. And this is a healed me. So I had a stroke, and my stroke was on the right side. And it gave me you know, vertigo, and all kinds of symptoms and issues, not as severe as yours, you had more than me, you are the winner.

    Bill 5:43

    I aim to please, and I aim to outdo everybody else’s stroke.

    Lynette 5:49

    But I don’t have those major symptoms anymore. And I’ll tell you about, you know, the work I do in a second. But the important piece here is, that doesn’t mean I’m not different. I’m different as a result of having had the experience of the learning that I got from it.

    Lynette 6:08

    I’m different as the neural therapist when I go to someone’s home, and they’re struggling, and I listen to them. So we’re always changed by whatever happens to us. So we’re always changed by what happens to us. But I like what you said, you can be fully healed and still have remnants of difference.

    Lynette 6:27

    Now, on the traditional sense of fully healed, you’re not right, you still have symptoms. But I’m sorry, I agree with you. I think that a person has to reach a point in their life where they put behind them whatever’s come and take on the new them, and do that with some kind of passion, and move forward and call that done.

    Dr. Lynette Louise

    Lynette 6:52

    So what do I do? As a professional, I’m Dr. Lynette Louise. I’m called the brain broad because we travel all over the world and I’m a little tough sometimes. So I’m abroad. I’m a broad while I’m abroad.

    Lynette 7:05

    And I work primarily with neurofeedback, I work with families as a general rule, I like to heal whole networks of people as opposed to try to help one person who then is having to interact with others. And I’m gonna let Louloua, because I’m actually at work, and I’m sneaking away on a break to talk to you.

    Lynette 7:31

    So I’m gonna let Lulu do all the neurofeedback talk to you. She’s just written a book. It’s really awesome. She’ll tell you all about it. But I’m gonna tell you a little about stroke and neurofeedback just from my own experience.

    Lynette 7:43

    So I could talk about me, but I prefer to talk about a client who is much more impacted by the stroke that he had. And it’s a good example. So, stroke has sort of an S curve of healing, when you first have a stroke, you have like this big swooping healing period, first you get hit by it, and then you sweoop and heal, it’s pretty fast and pretty dramatic.

    Lynette 8:07

    And then it slows and it seems to plateau. And you think that nothing’s getting better. And the world’s got some pretty good, not the whole world. But you know, US for example, has a lot of really good support systems and responses to stroke. So they’re helping you in this part.

    Lynette 8:26

    And then you kind of plateau. And they’re saying, I don’t know, maybe you hit that point, but let’s give it another try. And, you know, try to keep it going in whatever you’re doing, whether it’s occupational therapy, or whatever, speech therapy, whatever.

    Lynette 8:39

    Because I mean, depending on where your stroke is, you can have all kinds of symptoms, right. So now it does another little swoop, and you get this little bump of healing again, I don’t come into the picture, usually, till you hit that point till you’re finished with those two, because I’m just going to take all the credit for what nature was going to do anyway, and what all of the medical professionals are set up to do for us anyway.

    Lynette 9:05

    So let them do their job, do the traditional mainstream stuff. And then when you hit this plateau after those two big swoops, as long as you don’t have another brain hemorrhage or something else to show off.

    Lynette 9:20

    Then you go okay, how do I get more out of this? Where can I turn to get a real big change and keep this healing going and not be told that’s all you get? And that’s where you want to talk about neurofeedback and some other neuro therapies they use but I primarily use neurofeedback for this and behavioral training. And as I said, I’m gonna let Louloua do that I’m talking a little fast because I’m on limited time. And I wanted to make sure you had a sense of that.

    Bill 9:51

    That’s fine. I’ll definitely get a lot out of Louloua about that. So before we do that, I want to ask you about that. bump those bumps that you spoke about those curves, that you spoke about recovery, because a lot of stroke survivors will experience that recovery, they’ll get excited.

    Bill 10:09

    And then they’ll get down in the dumps when the supposed plateau happens, or somebody says to them, you’re plateaued, or some, well, meaning doctor or nurse says, that’s about all you can hope to get, you know, don’t set your expectations too high, and all that type of thing.

    Bill 10:26

    And that’s really frustrating to hear that. Doctors still today, say that to people, you know, you’re probably never going to walk again. And all that stuff, what do you say to somebody who’s listening, and has been told that? And they kind of brushed it off but really, it’s affecting their recovery? What would you say?

    Lynette 10:47

    You know, I think that it really depends, I can’t give you a straight up answer. Because a lot of the time, Doctor, I’m going to sound like a politician, and I don’t mean to, but a lot of the time doctors give the advice they give, or the response they get from their own life experience, gee, I, you know, I had that patient before, and they were so full of hope.

    Lynette 11:06

    And they followed, you know, they went all over the world spent all their money they bought, you know, the tale of a serpents, and they stuck it in their eye. And they like they did all these things, right? And, they’re trying to save you from that they’re trying to say, I want you to get on with your life.

    Lynette 11:22

    And some of them say it because they’re exhausted. And they don’t have any other tools. And they’re, you know, they’re just saying it, just to get rid of you as a patient because your insurance ran out. And some of them say it, because they haven’t taken the time to get to know your family, and that you’ve got a kind of support system that would really help you.

    Lynette 11:44

    So there isn’t an answer to your question. But I would say to the person hearing it, that if you listen to all my answers, just now you can take what they say with a grain of salt. And you can decide what that means for you, in your life experience, what you want to do, if you want to stick the tail of a serpent in your eye, you go ahead, but it’s probably not going to make you walk again.

    Lynette 12:10

    I get why we tell people to stop hoping, because we think that’s going to free them from this, sort of passion they have for healing. But what are we leaving them with no passion? What’s that for? I mean, the idea is to have a goal in life and a passion for it. So if yours is to get better then you know, that’s fine, do that and take it with a grain of salt.

    Lynette 12:36

    That’s what I would say to that and that patient I wanted to tell you about is kind of a good example. So he had a stroke. And his wife is a nurse. And you know, they called me and because she and the way she said it, which is interesting, because she was a psych nurse, right?

    Lynette 12:50

    And she’s like, I just want him to have his confidence back. I just want him to have his confidence back. And I’m like, so he had a left hemispheric stroke, and you’re just worried about confidence. It’s an interesting thing. What do you mean? Nevermind, wait till I get there.

    Lynette 13:05

    So I like to not know too much other than some mirror imaging stuff, because then I’ll sort of reinforce the problems in the home, I want it to be sort of new to me. So I get there and he’s been crying since he had the stroke he can’t stop crying.

    Lynette 13:21

    This is something that happens to stroke victims not all depends on where the stroke is. And it doesn’t always happen the whole time. Sometimes it gets in that moment that you’re talking about.

    Lynette 13:30

    And then he just cry and cry. But he could not stop. He just cried and cried and cried. And to her. She’s thinking psychologically he just needs his confidence back. I’m like, Well, no, it’s a little more than that.

    Lynette 13:44

    So I get out my equipment. And he’s crying and crying. He’s gone through all these hoops have been told. That’s all they can do. They’re offering all these psych meds and everything and I come in, I swoop in with my equipment.

    Lynette 13:56

    I stick the sensor on his head. I say, I’m not going to ask any questions. I got to get you to stop crying first. And he’s like (sobbing) and 10 minutes later he’s no longer crying ever again.

    Lynette 14:11

    Unless somebody’s grief for normal crying. And now we can do some work. Well, that looks pretty magical, doesn’t it? You know, somebody’s sitting there and they’ve watched their husband go through all these things. He lost his math ability was a math genius that was his job.

    Lynette 14:29

    He was he’s lost some ability of one arm. He’s like he’s got issues, right? But he’s the thing that’s tearing her up is he’s crying and crying and crying. And in 10 minutes, I fixed that. And I literally could have packed up and flown away and they would have still thought of me as an angel of mercy.

    Lynette 14:49

    But there was much more that could be done. So it kind of goes to what you said you know you’re on this journey when the you get off. When do you say that’s enough? Feeling for me time to get back to my no longer the same life. But the life that’s presenting itself to me.

    Lynette 15:10

    I don’t know that you even ever have to do that, to be honest, you know, I mean, you’re also going to age, you’re also going to be degenerating and, and having life happen to you while you’re healing. So it’s a moving target at all times, kind of like the wave that’s coming in while the other ones going out.

    Lynette 15:30

    So I think you can just say, this is what happened to me, whether it’s a physical trauma or, you know, a stroke, or emotional trauma. And what am I gonna do with that? And how am I going to live today?

    Fully Recovered

    Bill 15:47

    Yeah, love it. That’s fair enough. I mean, most people that struggle with that concept that we’ve spoken about briefly, that whole plateauing situation is they think that the whole recovery has to be the stroke recovery, but there’s an emotional recovery, there’s a mental recovery and the physical recovery.

    Bill 16:05

    So you take a little bit of this and a little bit of that. And when I say I’m fully healed, I’ve done a lot of emotional work, I’ve recovered in that space, more than the physical space. And the space that I’ve recovered in more. The emotional side is what has allowed me to take my stroke recovery to the point of saying, I’m fully healed, even though I’m living with these things.

    Bill 16:26

    Because I’ve come to terms with the possibility that I might die tomorrow, I’ve come to terms with the possibility that my dad wasn’t actually terrible. When I was a kid, when he stopped me from doing something I shouldn’t be doing, that he did the best he could with the resources he had available to him at the time, you know.

    Bill 16:44

    So I’ve done a lot of that work. And I’ve dealing with the challenges that stroke creates. For me today, I’m not dealing with all the other and resolve challenges that I had in the past as well as my stroke recovery. So I can ask you a question. Yeah. Are you better today than you were before? I’m better than I’ve ever been. And I’ve got that ever had?

    Lynette 17:09

    Yeah. That’s why you’re calling it fully recovered. Because just because you had to take some different pathways, right? I used to say to my, I adopted a bunch of children that were mostly handicapped. So one of my sons, I said a lot, very often, too. I said, Look, yes, you have all this against, you have tourettes, you have technical retardation, you have (inaudible) syndrome, you have autism.

    Lynette 17:34

    But everyone else is going to hit about 18. And they’re going to start going to the bar, and they’re going to stop thinking too much. And they’re going to stagnate. And if you don’t do that, you can be like the tortoise and the hare. You can just keep on keeping on.

    Lynette 17:50

    So he’s 30 32 now Oh, gosh. And he did that he followed that advice. They didn’t all. But he did. And it’s really played out to be exactly that. And it kind of reminds me of your story. You so yeah, you trade it in maybe some some numbness for some emotional maturity.

    Lynette 18:12

    You trade it into, you know, so in the end, are you a better cocktail, human? Yes. And that was what I could say about that man that I worked with in the end. And there was some really dire things that were going on in his life. And he would never have addressed them. Had I not shown up and had I would never have shown up. Have you not had this?

    Bill 18:33

    Yeah. Lovely. Well, it was meant to be and it seems like I think we’ve come to that time where you need to scoot off. I want you to pass the baton to Louloua.

    Lynette 18:44

    Okay, so I apologize for not wearing makeup and doing all that right stuff. But here I am taking my break, and I gotta go. I’m Dr. Lynette Louise. And Louloua is going to tell you all about me because her are book’s about me too see you later bye!

    Bill 18:59

    I’m not wearing makeup either.

    Louloua 19:01

    Yeah, me neither it’s 1am here so.

    Bill 19:05

    Wow, thank you for being here. I really appreciate it.

    Louloua and Lynette 19:08

    I love doing this.

    Louloua Smadi


    Bill 19:10
    You’re the author of the book From Client To Clinician. So at one point you were a client of some sort. Tell me a little bit about what led you to be a client of Dr. Louise Is that right?

    Louloua 19:24

    Exactly. So we were first a client of Lynette because of my brother who has autism. So that’s how we met her and that’s how we got introduced to neurofeedback therapy. And she has a way of working with the whole family. So I got to do neurofeedback as well and my primary issues when I was young, I was 15 were depressive tendencies and attention issues.

    Louloua 19:50

    I was failing at school, I was a typical, you know, ADD team, who was sad all the time. And that’s how I started as a client. And then what happened is that I saw really good changes not only within me but with my brother. And she also helped my younger brother and my younger sister.

    Louloua 20:12

    And I just got so fascinated by this that I decided to pursue it professionally. And then I became a clinician. And I work primarily with children with disabilities, autism, and cerebral palsy special needs. So that’s what I do now. And I trained under the supervision of Lynette and she has tremendous experience she has eight children and has adopted four multiple handicapped.

    Louloua 20:46

    And my book is kind of my way of learning with limits. And so it has interviews with her. And it really is just about her specific approach that is very holistic and loving, in a way and full of, you know, she’s full of knowledge, and she knows her neuroanatomy really well.

    Bill 21:08

    Firstly, how does somebody have 12 children and still able to get on to a podcast? That’s amazing.

    Louloua 21:14

    Sorry, 8 not 12.

    Bill 21:18

    Even so, well, how does she managed to still do that work and do all these things? I’m gonna have to ask her about that on another interview, I think but for right now, I’m curious to know about your 15 year old self. So what were you like, and how was that impacting your life?

    Bill 21:36

    And then, a little bit later, what we’ll do is we’ll talk about what neurofeedback is, and how it supports, altering the way that the brain works. So, what kind of person were you like it 15? What impact was your condition, causing to you?

    Louloua 21:55

    And the main issue I was having really is I wasn’t able to focus in study. And I had when it came to communication. So it’s very ironic that I wrote a book, I had horrible writing skills. You know, my teachers were not nice to me at all these, you laugh on my face and say that I couldn’t write anything, and that I would basically be a failure in my future.

    Louloua 22:23

    That is a very French way of teaching. And obviously, the whole environment feedback that you’re getting doesn’t help. And it kind of encourages that, which I’m sure is the same when you’re dealing with stroke. If you don’t have the right environment next to you, you just end up believing what people are telling you.

    Louloua 22:42

    And what was fascinating to me is when I learned about the brain, and that it wasn’t my fault that I was feeling that way, or that I had, you know that I was lacking certain abilities and skills. I was mind blown, and I felt so good to know that there was something in my brain that was causing this.

    Louloua 23:04

    And in my case, it was a lot of slow brainwave activity that was just making everything more difficult for me to do so even socially, it was difficult for me to be in a large group of people and friends, I just got very overwhelmed. And I usually just prefer to stay home. And I usually just had a couple of close friends. And that was it.

    Bill 23:29

    What you just said sounds like what strikes survivors say. So, you got overwhelmed, and you prefer to be at home. Not a lot of people and not a lot of stimulation at the same time so that’s very interesting.

    Bill 23:43

    So it sounds like what you’re describing is what I’ve described about my own brain in the past, and what other people are describing about their brains. But until the age of 15, this was normal for you. You didn’t know any different. Explain to me what the slow, What was it that you said about the neurons? Was it that they were working slowly? So explain that. What does that mean?

    Different Brain States

    Louloua 24:10

    So your brain has chemical and electrical energy and that’s how neurons communicate. And your brain states, your states when you’re asleep, or when you’re very nervous, or when you’re focused on an exam or you’re doing a surgery on brain surgery. Your mind and body and brain need to go through several states and that’s your states are reflected in your brainwave activity.

    Louloua 24:38

    So if you put sensors on your brain, same way you can shake your your heart with an ECG, we do the same with an EEG. And by measuring the brainwave activity, we can see what’s actually going on. So when you’re asleep, you have very low brainwave activity so it’s slow.

    Louloua 24:58

    So your brainwaves are just slow when it comes to each second. And then typically, and I’m really simplifying this, the more tense you are, or the more active you are, let’s say, the quicker your brainwave activity will be.And your brain needs specific amounts of those frequency groups. Depending on where you are looking in the brain, depending on what state you’re in, depending on your environmental factors, so many things.

    Louloua 25:32

    And a lot of disorders and psychological issues. And any brain challenge really will, you’ll be able to see what’s happening in your cortical activity. So really, when you’re looking at EEG, if it’s not, invasive, you’re only looking at the cortical, but you could also put electrodes on the actual brain. And that’s much more you can actually see what’s happening.

    Louloua 25:58

    When you’re just cortical, it’s on the scalp anyway so very effective. So let’s say someone with depression would usually what has been shown is usually if you’re depressed, you will have a lot of slow brainwave, if you have lots of anxiety, you’ll have a lot of high brainwaves fast.

    Louloua 26:20

    So what happened with what was happening with me, that’s true, I had no idea it got worse when I was in high school, because there were more challenges thrown at me so and I started seeing the lag I had with my classmates. And that is something that also happens with stroke, you basically have a slowing of your brain activity after it.

    Louloua 26:46

    Especially in certain areas, maybe where the stroke happens, or maybe ends up being a compensation, depending on the case. And so actually that slowing of the activity of the brain ends up creating so many symptoms because of it. So if you just think about your energy, in general, if your brain is running at a very slow pace, but the world around you is going faster than you are.

    Louloua 27:18

    Then you end up not being able to do anything. And you end up being the one who you know, you get those labels of you don’t want to try, you’re not motivated. You’re just slow, or you’re kind of an idiot, you don’t get it. And it actually happens you also have the reverse effect.

    Louloua 27:37

    So if you have someone who’s running at too fast frequency in their brain, things outside are slower. And actually, they get the opposite, which is usually you don’t care because you’re maybe too hyper, or you don’t care because things are going so slow around you in your head, you just cannot stop thinking of everything that’s happening, then you end up not wanting to do anything either, because you’re just overstimulated, but in a different way.

    Louloua 28:09

    So that’s an important way of also understanding Okay, am I and the way we call and I talked about it in the book, it’s you can use the word of arousal, how aroused you are. And you can be under aroused or over aroused? Or are you both? Or do you compensate?

    Louloua 28:25

    Are you under aroused, and so you have to compensate. And then you end up looking like you’re over aroused. So maybe you’re this hyper person who’s running around, but you’re really just doing that to compensate for how you’re actually feeling which is low.

    Bill 28:38

    Right. Interesting. You mentioned anxiety, and you mentioned depression. But very often, when you speak to people who have anxiety, or depression, or have one, they seem to be looped together, they seem to be combined a lot by a lot of people.

    Bill 28:54

    So you hear about people talking about after the stroke, they have anxiety and depression, they might have depression about certain issues. And they might have anxiety about certain issues. So typically, stroke survivors will say they’re anxious about the possibility of another stroke, they’re anxious about the possibility of what their life is going to look like in the future.

    Bill 29:12

    And they’re also depressed about what the stroke has done to them. And they’re also depressed about what the future might look like. So how can you be both things at the same time? Is it possible?

    Intro 29:22

    Yes, of course, of course you can. And it can be from two different things. First of all, your brain can have different states. So you know, my frontal lobes can be low, so maybe I can feel more depressed when I use my frontal lobes. But my parietal lobes could be running on a faster pace.

    Louloua 29:42

    So maybe when it comes to using as you know, spatial orientation, I’m going to get all revved up because I just can’t use those skills. And so then I get anxious about that. So you have the brain side, but you also have like, I was just saying explaining about your arousal, a lot of the time, anxiety possibly comes from depression.

    Intro 30:08

    If you’ve had a stroke, and during 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, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 30:33

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

    Intro 30:52

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

    Depression And Anxiety

    Intro 31:21

    As a way of compensating in a way. So if I’m very depressed, and it’s very hard for me to put on my clothes and start my day, I want to, I’m very sad about my life. I want to but I’m very sad. But when I think of putting on my clothes, it gets me anxious. So you’re sometimes anxiety comes from depression.

    Louloua 31:48

    And that’s why it’s important and it also happens the other way around, you could be anxious, and then you get depressed because of that anxiety. But most of the time, it’s the latter. And that’s why it’s so important to actually figure out which one has the bigger presence.

    Louloua 32:06

    And maybe a quick way of understanding that is, if you had to pick between the two things that happened to you the most you get mostly sad-depressed or angry-mad. And usually you’re so your body tension and your arousal state. You usually have one that happens the most. And that’s what you’ll usually work on the first because you really like she was never mind sorry I was gonna mentioned Lynette but we’ll talk later about her.

    Louloua 32:40

    It was an example. That if you’re crying, and you can’t figure out if you’re crying because of your depression, or because of how anxious you are. Maybe you can take a step back and figure out okay, is it crying? Because you’re not able to do the things that you want to do? Or is it because you’re trying to do those things and just thinking about it is making you anxious?

    Bill 33:09

    I love it. It sounds like what you’re saying is you’re trying to identify the root cause of the main imbalance in your emotional state or mental state. Right? So you’re getting to the root cause if we go to the root cause and we address that we might intervene better and quicker, than if we were trying to intervene from the other angle, because we hadn’t stopped to think about it or the clinician, that we’re seeing the counselor, the psychologist or whomever hasn’t been able to ask more in depth questions to get you to that point to really understand what is the root cause.

    Bill 33:48

    Now I can understand how depression might be the symptom of a root cause that comes from somewhere else. And that makes complete sense to me in that I’m depressed. But then trying to fix the depression without addressing what made that person feel depressed, is not going to really do anything other than mask symptoms, for example, it’s the way that I feel sometimes, antidepressants are prescribed the prescribed to deal with the symptom.

    Bill 34:21

    And very rarely does the person who’s taking the antidepressants get the opportunity to address the actual root cause of that issue. So I think it’s a key thing that sometimes is missed when people are prescribed antidepressants, and I’m okay with people getting prescribed with any depressants for a period of time to help get through some rough stages to help intervene in a very critical moment in life.

    Bill 34:52

    But there needs to be a discussion around Okay, what’s the root cause of that and let’s address that and see if the depression then goes away because the root cause was dealt with. So I think that’s a valuable conversation that we just had the people who are watching and listening and going to really, perhaps take their treatment of depressive symptoms to another level, they’re going to have the opportunity to ask more questions.

    Intro 35:21

    And maybe just to, wrap that up, when when I was younger, and I genuinely did feel like I had, I don’t say I had depression, it wasn’t clinical at all. But I did have tendencies and, and it’s important to also know you’re right 100% of what you just said, but also if your brain is creating activity in certain areas that are going to make you feel depressed, it’s also going to be very hard to figure out what it is that is bothering you, if you can’t just change that thing that is happening.

    Louloua 35:58

    So and the problem that usually happens with antidepressants, and that’s where it’s different from neurofeedback, is that it with neurofeedback, you’re actually teaching your brain to change versus medication where you could also be adding other, let’s say maybe numbing effects or side effects that would be coming with it. And then you don’t actually know what’s actually going on anymore.

    Louloua 35:58

    So you could with antidepressants also add some sort of anxiety. With neurofeedback, where I feel like I got lucky is that from the get go, we dealt with those brainwaves. And that was it. And then I got to understand how my world was and I got to understand you know, as a young teenager, you want to understand who you are and who you want to be and, and how are people accepting you and viewing you?

    Louloua 36:55

    And so then I was able to work through all this and no, I’m great. And now I do sessions on myself whenever I feel like I’m in a little slump and I need a little boost of motivation or I feel very foggy or I can’t focus I’ll do a session.

    Bill 37:14

    Brilliant. So were you a curious kid at 15 say before your experience with neurofeedback, were you a curious kid? Did you always want to know more? How did you get started with the neurofeedback?

    Bill 37:32

    So, first again, we’ll talk about how you got started. And in a minute, we’ll talk in a little while we’ll talk about what neurofeedback is. Lynette came over to chat with your brother and the family about your brother’s condition. But then some way you got involved, how did you get involved?

    Intro 37:51

    So that’s her way of of treating. She believes that healing happens within a family. And I love that I thought it was, you know, you can’t single out one person who has a disability and not think that it affects everyone else and not even think that maybe our brains were also affected, you know, we don’t know is some of my slowing, because also my brother has autism, we will never know, we still don’t know even how autism comes about.

    Louloua 38:23

    So it was also important for the family to know that they had work to do on ourselves too. And that’s one of the biggest lessons that we had to learn is you can’t fix others, but you can fix yourself. And if I hadn’t done that work on myself and same for my parents and my siblings, my brother would have forever been the boy who does those therapies.

    Louloua 38:53

    So even me speaking right now to your audience. neurofeedback is also good for all of the carers, you know, it’s difficult for everyone around as well. And it’s, you know, if you’re going through something and it’s just difficult to do all this neurofeedback is a great tool for everyone.

    Louloua 39:11

    And so that’s how we got started really all together. And the way that we did it was we got our own system at home. And so then Lynette trained my mom, and she gave her protocols. She looked at all of our brains told her what to do, she taught her how, and then it was my mom who did most of the sessions when I was still in high school. And then Lynette would come back home and check on us and train us again.

    Bill 39:44

    Right follow up. So what you said sounds exactly like a stroke survivor at home. That impacts well, let’s just assume it’s, you know, two children and a spouse, and, you know, in two partners in a partner relationship there. And there, I came home, I’ll talk about myself, actually, that’s much easier.

    Bill 40:12

    I came home and my stroke had impacted my head, my body, my emotional state, my mental state, my physical state impacted everything. And it did exactly the same thing to my two kids and my wife. And they were thrown into this world of stroke. My kids were children, they were 15 and 12, or 11, or something like that.

    Bill 40:36

    And my wife was not a nurse, she was not a doctor. And all of a sudden, we’re dealing with this whole complex situation of stroke. And they’ve got no idea how a brain that is impacted by stroke, how that looks outside. Because inside, they can see that there’s a blood clot there and it’s causing interference with the brain, they see a picture of that on the screen, but outside they don’t understand how that manifests in the world, for the person who’s going through it.

    Recovery With The Family


    Bill 41:10
    And then they also don’t understand how they’re supposed to respond. When they go through this. And they struggle, they struggle just as much as I struggle. So what you’re saying is this whole beautiful thing about the recovery involves everybody, everybody’s got something to learn about that.

    Bill 41:30

    And it’s just as important to address the issues of the caregiver, the other people that are in the house that are affected be children or other adults, because giving them the tools to deal with that enables them to calm themselves a little bit and get better at dealing with this situation that they’ve been thrown into.

    Bill 41:53

    Which then makes it easier for the stroke survivor, to also have to just worry about dealing with themselves rather than like I was at the beginning, I was worried about myself, but I was also worried about my wife and my kids, and how I was going to keep them calm and keep them feeling okay about this whole situation, even though it was difficult.

    Bill 42:20

    So I think you’ve touched on a beautiful thing there. And, now that we’ve got to that point, I want to fast forward a little bit. Because you were 15. Today you are how old if you don’t mind me asking 28, 29.

    Bill 42:38

    Thank you. So, moving forward 13 years, you’ve written a book, From Client To Clinician. Tell me about what neurofeedback is, let’s understand what that is and how that impacts the brain.

    Neurofeedback


    Louloua 43:00
    So neurofeedback is a brain therapy that improves brain functioning, by training individuals to control their own brainwave. And very simply, but the way we do that, it’s technically done with EEG you can also do it in an FMRI machine. But let’s not get into that. So with EEG you would need either people use, you know, the full cap things, I’m sure you’ve seen them before, or just.

    Bill 43:28

    Like a silicon cap.

    Louloua 43:30

    Yeah.

    Bill 43:30

    It has electrodes on it and wires attached to it.

    Intro 43:33

    Yes, but you don’t need that necessarily, you can also just use three to four electrodes. So you know, it’s not that invasive, if that’s something that they’re not comfortable with. Because I know my brother wouldn’t have been able to do that.

    Louloua 43:49

    So you put the sensors wherever you want them to be depending on the case, usually you’ll start in the middle of the of the brain. And the sensors are connected to a computer. It’s very simple. It’s just one or two laptops.

    Louloua 44:03

    And we are seeing and measuring the EEG as we’re measuring the EEG you as a patient are getting feedback about your brainwave activity, and you’re getting feedback based on how we want it to perform. So every time your brain performs the way we want it to and that desirable direction, you’ll get a reward.

    Louloua 44:26

    So this is not an intrusive therapy where you get electricity in the brain. That is something else. Here. It’s pure feedback. It’s pure information. It’s a binary code. It’s reward punishment. It’s operant conditioning, it’s classical conditioning, where you’re basically just asking the brain to go in a certain direction.

    Louloua 44:48

    And whenever it does that, you get an an audio reward. So a beep and you also get a visual reward. It would it could be a pac man that’s you know, eating the dots. It could be a puzzle piece. So every time it beeps, every time you do the right thing, you get a puzzle piece popping up needs to be very simple.

    Louloua 45:10

    And it’s really just asking the brain to change and simply put, you have the EEG, you know, the normal ad that you would see, and then we filter it. And we asked to look at that in more detail.

    Louloua 45:24

    So we look at the slow brainwaves, the maybe the middle ones, the fast ones. And we ask, okay, we want more brainwaves that are faster here. We want less brainwaves that are slower here. And each time that your brain does that, simultaneously, you get a reward.

    Bill 45:43

    So it sounds like it’s actually taking advantage of neuroplasticity?

    Intro 45:48

    Yeah, that’s what it is. It’s self regulation is neuroplasticity at its best.

    Bill 45:54

    And there’s a visual aspect to it. So for once, what you can do to the person is, instead of trying to get them to imagine what neuroplasticity looks like, you’re almost demonstrating neuroplasticity on the screen. Because they’re getting this instant feedback, your brain is doing this right now, when it does that, and it feels better, and it does better.

    Bill 46:16

    This is what it looks like, and now you have a visualized way to bring your brain over from this pattern to this pattern. And when you do that you’re getting a reward. And as you do that the neuroplasticity into that space, that new space, that supportive space increases the neurons fire more often they connect more often.

    Bill 46:39

    And when they connect more often, you start to decrease the other neurons that are not supportive, just as a matter of they get filtered out and the new ones come on. And then as a result of that, you also able to practice that, which is like practicing anything. The more you do it the better it gets is that right?

    Louloua 46:59

    Yeah, I don’t even need to be here. You got it.

    Bill 47:04

    It’s lovely. I’m glad that I got it because it’s really important for me to get it. Because we can have multiple conversations like this down the track to the people who are listening and watching so that we can truly get people to understand what neuroplasticity is because I know what it is I interviewed Dr. Michael Merzenich about neuroplasticity, but it’s very difficult to explain it to somebody.

    Bill 47:29

    And when you can visualize it, and you can show them an image on the screen, it makes it much better. So how soon do you start seeing now we’ll talk about how quickly it can work? How soon do you start seeing spikes of the new neuronal patterns and the new response in the brain waves? How soon does it happen?

    Intro 47:53

    So technically, so it’s the temporal resolution of EEGs don’t know how many milliseconds it’s very, very fast. So if you’re actually looking at the EEG data, you can see changes happening instantly. Now, you have brainwave change, and then you have behavioral change, right?

    Louloua 48:17

    So behavioral change, if you got a good assessment, and hopefully a good therapist, you should feel a difference after one session. A session typically lasts between 20 to 30 minutes. And it really depends on what you’re after. So and the best way to really explain the neuroplasticity here is your your brain is constantly changing.

    Louloua 48:42

    And it has to do with all of the factors that are happening around you, you’re getting constant feedback from your world. You know, if you’re entering a room that is dark, and there’s no lights, you’re getting feedback that okay, it’s a silent room, maybe you’re not supposed to be very active here.

    Louloua 49:02

    And maybe people are about to go to, I don’t know, I’m making this up. If you go to a supermarket and you see something traumatizing, these are all sorts of feedback that are changing your brain as you go. And this is a form of neuroplasticity, it’s really just the art of changing the brain.

    Louloua 49:23

    And in our case, we’re using very simple communication tools, which are just the beeps and visualization to say yes, yes, yes, yes. Keep going. We want you to go over there, this way, this way. And the more you go that way, you start feeling things. You start actually feeling differently.

    Louloua 49:47

    You have people who maybe are you know if whether you’re trying to go after communication language or memory or you know, motor functions, maybe the first thing you’re feeling when you You’re sitting on that chair doing a session, maybe you’re feeling anxious.

    Louloua 50:04

    Hopefully, throughout the session, you start feeling a bit more comfortable, okay, and I’m okay, it’s not so bad. And then what you’re really first after the first few sessions is really making sure that you have everything kind of stabilized cognitively, that you’re okay that maybe you’re not anxious about the session and that you have trust in the process.

    Louloua 50:27

    And that is really neuroplasticity. You want to trust your ability to heal at the end of the day. Because if we try too hard, we’re also going to counteract, you know, we have to believe that we were made a certain way, and that we can recover and that we can heal in a certain way and sometimes doing it too much and not believing in that ability of neuroplasticity, and being too nitty gritty about what’s going to happen, you actually end up doing the opposite.

    Bill 51:06

    Yeah, I love it. And that kind of reminds me of negative neuroplasticity, everyone talks about neuroplasticity is this amazing thing. It’s always a positive discussion. But neuroplasticity can happen in the negative way. When people take behaviors that are not supportive and repeat those behaviors, then they use neuroplasticity for evil instead of good.

    Intro 51:29

    Yeah. And even you can minimize neuroplasticity and say, I’m going to do those. Not minimizing It’s okay. But if you do like those apps, and you’re trying to train your brain and your mind performance, those are good, they’re fine. But you know, it’s so easy as a marketer to say this is good, you know, neuroplasticity.

    Louloua 51:52

    No neuroplasticity is also much more than that. And neurofeedback is a great example of being able to be site-specific. So knowing where you want to target what areas of knowing what you’re actually after. And it’s non-invasive, and you can do it in a comfortable environment. And it’s effective.

    The Seven Questions

    Bill 52:19

    That’s beautiful. So this is one of the reasons why I have a PDF, download on my website, people can go to recoveryafterstroke.com and download a document that is called Seven Questions To Ask Your Doctor About Your Stroke. And one of those questions on there is where in my brain did the stroke impact? And what does that do? Because often people don’t know where in the brain and impact is.

    Bill 52:51

    And often they don’t know as a result of that. What does that do? And what therefore do they need to work on? And at what you’re saying is that if they do know, those two things, and then they allocate the neurofeedback to that part of the brain, we can go really, we can very much get a narrow view of what’s happening in the specific place where their stroke happened, and then deal with that specifically.

    Intro 53:17

    Yeah, yeah, sometimes, it’s also possible that sometimes going on that actual spot is too much for the brain. So we actually go next to it. Or if you know, if there was lots of damage, sometimes we’ll work with the opposite side just to see how things are going. But yes, it’s the fact that you can have that flexibility of picking and choosing and doing your trial and error and figuring out who you want to be also recovering.

    Louloua 53:50

    You know, you could also pick if you feel like recovering in a way that is making you feel a certain way. It’s also about the emotional side and the psychological side of it. We all want to heal happily. We don’t want to heal, feeling like we’re miserable either. And having that flexibility of choice is important.

    Bill 54:13

    Wow what a concept healing happily. Man that would be such an amazing thing to add on to recovery, healing happily, instead of begrudgingly and angrily is such an amazing concept. That would be fabulous. If you could add that to any recovery. I love that.

    Bill 54:34

    So let’s talk about how easy is it for people to access neurofeedback services, like the ones that you provide? If people can’t get in contact with you directly? Is there a network around the world which enables people to access this service?

    Intro 54:51

    There are several networks. I know there is the BCIA the board certification Have neurofeedback and they usually have providers. But really, you could also just do a Google search of neurofeedback therapists around you, I would recommend, strongly recommend that you look for people who have a board certification.

    Louloua 55:15

    Or who, at least are using clinical systems because there are lots of systems that are, you know, the whole brain computer interface are very popular right now to do things with the brain. So you just want to make sure it’s something clinical, especially when it comes to stroke patients.

    Louloua 55:33

    You don’t want to be playing around with something that you calf, you know, reverse, because at the end, you could do a session and then it could also turn out that you didn’t like how it made you feel. So you want to be able to reverse it as well.

    Louloua 55:49

    So yeah, just to know just looking for neurofeedback therapists and some sort of board certification. You’re in Australia, right? Yeah. And Australia has great, great resources over there. So I wouldn’t be concerned. I’m sure it will be easy to find.

    Bill 56:10

    Yeah. Where are you located?

    Louloua 56:13

    I’m in France.

    Bill 56:15

    Okay.

    Intro 56:16

    So a Dr. Lynette Louise my mentor is in the US. And we’re right now working on creating a online platform that is about, you know, everything we’re talking about and kind of our approach and but in the meantime, we work, you know, locally and but really what I’m hearing is just to really spread awareness about neurofeedback.

    Louloua 56:41

    I want it to be part of any all recovery programs, you know, the brain is a brain. Yeah, that’s what Lynette always says, and I always love it, whether you were diagnosed with whatever disorder or whatever trauma we had, a brain is a brain and most of the healing principles apply, you know, with me with my brother with autism, I’m able to speak that way with you, because of my clients, but really to be very honest, it’s because of my personal experience.

    Louloua 57:13

    Where we go through something personally, it just hits you differently than just, you know, working with clients, because at the end of the day, you’re not home with them. And Home is where things happen. And Home is where the healing truly happens.

    Louloua 57:30

    You could be going to all the best therapists in the world. But if you don’t come home and feel strong and balanced and supported. It won’t help that much. And you want to have the most impact you can as possible.

    From Client To Clinician


    Bill 57:48
    Yeah, I agree. So you were inspired to write a book, from client to clinician Tell me a little bit about what the book is about.

    Intro 58:00

    So it’s essentially about my story from client to clinician, and it goes through also the story of my brother with autism, and how we believe he’s, you know, fully I don’t like to use the word recovered for autism, but he’s made so much progress and has grown so much.

    Louloua 58:20

    Some people may look at him and say, no, he hasn’t. He’s very autistic. What are you talking about? But considering where he was and where he started and what he’s doing with his life right now, he’s earning a certificate to become a chef pastry and he is doing so many beautiful activities.

    Louloua 58:42

    He just grows and grows year by year. And he’s amazing. And so it’s a lot about his story. And really, it goes into detail about what it’s like to live with neurofeedback because if you look up what neurofeedback is it’s very technical, and it’s kind of scary to read about it.

    Louloua 59:01

    And I wanted to offer a personal story of neurofeedback. And so it’s our stories along with an explanation of neurofeedback kind of goes into the field. And you can get so what I didn’t talk about, for instance, is you can get a brain map of your activity and see actually what’s going on.

    Louloua 59:25

    There’s so many ways of doing neurofeedback at the end of the day, even if we have a certain way of doing it. Just starting it and doing neurofeedback as long as you’re happy with your provider and with how your healing is going. It’s just good for your brain. So that’s what the book is about. It’s made to be very simple and friendly to anyone who’s interested in neurofeedback.

    Bill 59:52

    Beautiful, and it’s easy to get? Can people buy it online? Where can they get it?

    Louloua 59:57

    It’s on Amazon. So Just Amazon order.

    Bill 1:00:03

    Fabulous, I’ll have all the links there. If somebody wanted to reach out to you directly after this podcast, what’s the best way to find you online? Where would they go and best way to reach out?

    Intro 1:00:14

    So the my website, my book website is clienttoclinician.com. And you can find me on Instagram, it’s Louloua.seh. And that’s also my email if anyone wants to email me, [email protected]. And yeah, and my book is on Amazon, and I just hope it reaches the hands of the people who are in need and just want to learn.

    Bill 1:00:44

    Yeah fabulous, I think it will. And it’s a great way to do a case study. It’s your own case study, it’s about you, it’s about your family, your experience your brother, and you’re sharing a picture. And this is what I love to hear about these stories that have been in the process for 13 years is that you’ve gone from things were different and not so good, potentially, they were bad for the family, for your brother, for you for everybody.

    Bill 1:01:15

    And now we are down into the future. And we’re looking at how things have evolved and shifted for the better, even though we’re not completely free of the thing that happened to us. And that’s one of my greatest challenges as a podcaster as somebody who coaches, other strike survivors, and as somebody who’s been around stroke now for nine years or more.

    Bill 1:01:40

    People see me, and they compare themselves to me, and they want to be where I am. But they don’t realize that it’s taken some time to get there. And that’s what’s possible in the future. But for right now you have to go through the stage you’re at now. And then next week, you’re gonna have to go through that stage.

    Bill 1:02:00

    And that could be a bump in the road, and there could be.

    Louloua 1:02:03

    So many ups and downs.

    Bill 1:02:04

    Yeah, a little bit of a down and either way, you have to go through it. And then at some point, the ups will be more than the downs. And if you can continue getting more ups than downs, then you’re making progress doesn’t matter how long it takes. So that’s what I love about the fact that you’ve written a book.

    Intro 1:02:23

    Yeah and it’s very honest, it’s exactly what you just said, This isn’t a miracle story.

    Bill 1:02:30

    Yeah, it just is what it is right. And you’re talking about it from both perspectives. You’re talking about it from a family perspective, your own experience. And then you’re also talking about it from a clinical perspective, where you’ve actually had lots of years to practice and see the results for yourself.

    Bill 1:02:47

    So you know, it’s not just a one off, it didn’t just happen to your family. It’s happening to multiple people out in the world, all over the world, from different backgrounds, from different experiences and different issues, different challenges, but uniquely being supported in the same way.

    Bill 1:03:04

    And this is what I love. I love that, that story of hope, because that’s what I think doctors who deal with us in our recovery fail to do is they fail to give us the long term view because they just want to get us home, their job is to get you to keep you alive, and then send you home.

    Bill 1:03:25

    That’s what their job is. So don’t take anything that they say to heart, other than the fact that they’re doing the best they can do to get you home alive, and well. And the rest is up to you. And at some point, we have to take a little bit of responsibility for our own recovery. And it sounds like your entire family took responsibility for their entire recovery as a unit. Is that a good way to describe how they approach the issue?

    Intro 1:03:56

    Yeah, of course. And my parents learned an important lesson, which is to surround themselves with the right people. And you seem to be one of those people for many of your most of your audience. I believe you’re you know, that’s what Lynette was to us. But, you know, a lot of doctors and teachers, you know, we’re not nice to my brother.

    Louloua 1:04:24

    And but to block this out and to understand that they’re just doing their job and they don’t know the future because that’s not their future. We can’t expect them to give us hope about a future that they’ve never lived or even seen. You know, how many of their patients do they even see again?

    Louloua 1:04:42

    We’ve never seen the doctors of my brother again. They probably don’t know who my brother is right now. But they learn that okay, you need to just have a really good team and to focus on building on healing and on creating new experiences. And you seem to be doing just that for your audience and that’s just great just being with the right team. And that’s how you handle your, your recovery.

    Bill 1:05:15

    I have a similar outlook to you. And that’s why I think I got excited when I received the email to connect. And I love what you do. I love how you go about it. I think, it’s in the most caring way to taking everybody into consideration. And you’re part of my team.

    Bill 1:05:34

    And that’s the beauty of we’ve created our own teams. And here we are, our team has just come together so that we can share knowledge across our own communities. And here we go. This is how it’s done. So I want to thank you so much for coming on to the podcast sharing story.

    Louloua 1:05:53

    Thank you.

    Bill 1:05:54

    My pleasure. And I know it’s very late in France right now. So I’m going to let you go to bed. So thank you for being on the podcast.

    Louloua 1:06:01

    Thank you so much Bill. I really appreciate it.

    Bill 1:06:05

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

    Bill 1:06:28

    From reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave the hospital you no longer have the medical professionals on tap. I know for me It felt as if I was teaching myself a new language from scratch with no native speaker insight.

    Bill 1:06:51

    If this sounds like you, I’m here to tell you that you’re not alone, and that there is a better way to navigate your recovery and rebuild a fulfilling life that you love. I’ve created an inclusive, supportive and accessible membership community called recovery after stroke.

    Bill 1:07:07

    This is an all in one support and resource program. And it is designed to help you take your health into your own hands. This is your guidebook through every step in your journey from reducing fatigue to strengthening your brain health to overcoming anxiety and more. To find out more and to join the community. Head to recoveryafterstroke.com See you next time.

    Intro 1:07:33

    Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individual’s 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 1:07:50

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

    Intro 1:08:07

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

    Intro 1:08:27

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or things you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:08:52

    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 How Neurofeedback Can Take Recovery To The Next Level – Louloua Smadi & Dr Lynette Louise appeared first on Recovery After Stroke.

    1 hr 10 min
  • Overcoming Foot Drop – Emily Knosher

    Overcoming foot drop thanks to some amazing technology has inspired Emily Knosher to join the board of the Freedom To Walk Foundation.

    Socials:
    www.instagram.com/knosher_average_recovery/
    www.instagram.com/freedomtowalkfoundation/
    freedomtowalkfoundation.org/

    Highlights:

    02:09 Introduction
    02:35 Brain Tumor
    10:58 Having A Positive Recovery Mindset
    18:27 Conversation Before The Surgery
    24:35 Seek The Right Kind Of People
    27:15 The Six Months Deadline
    36:42 Coming Home After Rehab
    42:29 The Small Steps
    47:32 AFO For Foot Drop
    50:07 Running A Marathon With A Foot Drop
    53:57 Freedom To Walk Foundation And Bioness
    1:03:14 Meeting People With Foot Drop
    1:12:37 Repurposing Walking Aids

    Emily 0:00
    But I didn’t know anybody when it happened to me right? Until I started looking online.

    Emily 0:07
    I lose my train of thought sometimes. Which we probably all go through the advocating for ourselves.

    Bill 0:25
    Let me take you it’ll come back to you.

    Intro 0:44
    This is the recovery after stroke podcast with Bill Gasiamis, helping you navigate recovery after stroke.

    Bill 0:57
    Hello and welcome to recovery after stroke a podcast full of answers, advice and practical tools for stroke survivors to help you take back your life after a stroke and build a stronger future.

    Bill 1:09
    I’m your host three times a stroke survivor Bill Gasiamis after my own life was turned upside down, and I went from being an active father to being stuck in hospital. I knew if I ever wanted to get back to the life I loved before, my recovery it was up to me.

    Bill 1:24
    After years of researching and discovering I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible. And now I’ve made it my mission to empower other stroke survivors like you to recover faster, achieve your goals and take back the freedom you deserve.

    Bill 1:40
    If you enjoy this episode and want more resources, accessible training and hands on support, check out my recovery after stroke membership Community Credit especially for stroke survivors. This is a clear pathway to transform your symptoms, reduce your anxiety and navigate your journey to recovery with confidence.

    Bill 2:00
    Head to recoveryafterstroke.com to find out more after this podcast. But for now let’s dive in to today’s episode.

    Introduction


    Bill 2:09
    This is Episode 146. And my guest today is Emily Knosher who experienced a bleed in the brain age 25 due to complications from brain surgery, Emily has learned to overcome hemiparesis, foot drop, and many other challenges stroke survivors face.

    Bill 2:26
    Emily Knosher, welcome to the podcast.

    Emily 2:29
    Thank you very much.

    Bill 2:31
    Thanks for being here. Tell me a little bit about your story. What happened to you?

    Brain Tumor


    Emily 2:35
    My brain injury happened when I was 25. It was 2015. I was in my fifth year of teaching public school. I was a chorus, teacher, and piano and theater and all the active stuff. I was even coaching on the cross teams.

    Emily 2:52
    Because the girls were just desperate. I guess they found that I played the cross. So they knock on the door, the chorus teacher to do that. So I did but I wasn’t heavily involved in a lot of stuff.

    Emily 3:02
    And one night, I was going to sleep. And the next thing I know I woke up. And my fiance at the time, told me I had a seizure. A grand mal seizure a big one.

    Bill 3:15
    He noticed you were having a seizure. And the first time you found out about it was when he told you?

    Emily 3:22
    Yes, so it happened in my sleep or right as I was going to sleep or something, but I was definitely unconscious. And that was scary, so you know, I wake up, and there’s just EMT in my room.

    Emily 3:37
    And they’re taking me to the hospital. So they did a CT scan. And for me, my story is a little unique. I actually doctors told me I had a brain tumor in my temporal lobe on my right side.

    Emily 3:51
    And it was that night where it looked really big on the scans. And the neurosurgeon was like, I’m just gonna take that out the next morning, right? So I went under for a brain tumor resection and during the surgery at some point or they mentioned shortly after they closed me up or something they’re not sure.

    Emily 4:12
    I had a hemorrhage. And I woke up paralyzed on my left side a lot of brain fog, a lot of confusion. Nothing was right. So I relate to the stroke community. I know. It’s not exactly a lot of strokes are different.

    Emily 4:35
    It’s not the typical experience. But the experience it seems that we all share is the being one person and then waking up the next day and being someone totally different.

    Bill 4:49
    Yeah, It’s really interesting is that you relate to stroke survivors. The thing is, I went for about nearly three years. before somebody said to me, you’ve had a hemorrhagic stroke, because it wasn’t typical.

    Bill 5:06
    And because a bleed is not considered an ischemic stroke, it’s not really dealt with in the stroke ward, in the same way it’s dealt by a different specialists group of people. They kind of don’t tell you that what’s happened to you. It’s different from a blockage or ischemic stroke or a blood clot in your head or whatever.

    Bill 5:29
    But it makes you feel the same, and you have the same impact and your brain goes out of action in a similar way, and then you have to recover in a similar way. No one did tell me any of that.

    Bill 5:39
    So I felt like you and I was kind of wondering like, did I really have a stroke? Or didn’t I like, was it the same? Can I say that? And it turns out that it was a hemorrhagic stroke. And that’s the best way that they can describe it.

    Bill 5:55
    But it’s not dealt with in the hospital by the same group of people that deal with the ischemic strokes and makes kind of sense, because we’re dealing with blood vessels that have burst rather than rather than a blood vessel that’s blocked.

    Bill 6:11
    Now, the tumor was that the first time that you sensed that there might be something going on in your head? Did you ever get massive headaches or, you know, all those challenges?

    Emily 6:25
    So something I do like to speak about, on the rare occasion I get to, is that I was experiencing short focal seizures for years, but we didn’t know what it was and pediatrician didn’t know what they were.

    Emily 6:45
    So what my pediatrician told me was that they thought they kind of miss diagnose it as a headache. Right, you’ll hear headaches or seizure you have any kind of seizure activity can be very diverse way of presenting itself with brain tumors, or any kind of seizure activity.

    Emily 7:06
    And my mother had a history of migraines. So my pediatrician at I think 17 or so said, oh, they’re probably just mini migraines. And so for me, it felt like I knew they would come on because I had an aura.

    Emily 7:21
    And they lasted nearly 30 to 60 seconds, I would feel like a warmth wash over me from the top of my head down. And I would have a little involuntary muscle movement, like swallowing was the thing I get kind of hot.

    Emily 7:35
    And then it would go away. I was driving through these. I was teaching through these at 25. I just lived with them for years just thinking oh, I’ll get migraines one day, that was the only sign that I have this tumor growing larger and larger in my brain.

    Emily 7:51
    Until finally, it presented with a grand mal seizure just out of the blue and I’m really lucky and really blessed that it happened in my bed on a soft surface with someone with me, because that’s not the case for everybody.

    Bill 8:05
    No. How big was achievement by the time it was discovered?

    Emily 8:10
    It was about the size of a golf ball. I have a few scans I post every year on my Instagram that assigns a golf ball. It’s a pretty rare tumor. It’s called the ganglioglioma. Mostly benign, but mine happened to be a grade two, just a little more aggressive.

    Emily 8:28
    So but because of the nature of it, and how big it was, and how close to the surface of my skull, it was I suppose the neurosurgeon was like, let me just get it. Let me just go in there and take it all out.

    Emily 8:41
    And what do I know? I’m scared. You know, nothing. When you get to hospital and someone gives you bad news like that. Nobody wants a brain tumor. So you’re like, do whatever you got to do to get it out of me. And so it goes, oftentimes, I do want to say, through my own healing and research, brain surgeries aren’t a death sentence.

    Emily 9:03
    They don’t typically happen the way it happened to me, there are plenty of safe and fine brain surgeries that happen and the patient just walked out the next day. I’ve actually had two so my second one went fine. But yeah, but to me, I was a little I’m lucky.

    Bill 9:22
    Not that you’ve got a door there that they can just open whenever they feel like and go in.

    Bill 9:26
    Wouldn’t that be nice.

    Bill 9:30
    Did they go in from the same spot? Or was it a different spot?

    Emily 9:32
    It was the same spot because it was a little regrowth of the same tumor five years later. Another shock but teeny tiny they had to go in there and get it. But believe me, I held my same neurosurgeon to the wall and he said, I can’t do it again, man.

    Emily 9:49
    Like I’m so inspired by you because you’ve had three experiences. And I have to tell my neurosurgeon like you’re not going in there. Unless you can promisee that’s not going to happen again, because I could do it once. I don’t know how I did it. But I know I can’t do it twice. So just know that.

    Bill 10:09
    That’s fair enough. He, or she?

    Emily 10:13
    He.

    Bill 10:13
    Yeah, my neurosurgeon was an amazing lady. She was the second neurosurgeon that I consulted with and when I met her in, so it happened in 2012. Then it happened in March 2012. And then it happened in 2014, in November 2014.

    Bill 10:31
    And when I met her, in November, 2014, she came up to me, she says, Are we going in? That’s it, we’re getting it out. And then I said, Okay, you know, whatever, Kate, you do whatever you like, you know.

    Bill 10:41
    And by now I was over it, I just wanted it out. And then I said to her, and then she came back and said, are we going to take it out? Is that what you want? And I said yes, please, please, I trust you do whatever you got to do, and I’ll deal with the stuff that happens later, whatever happens happens, you know.

    Having A Positive Recovery Mindset


    Bill 10:58
    And I was good, I didn’t do the fear. I didn’t do any of that stuff. I was really, really well prepared emotionally and mentally. And physically, I had just decided that it was going to be an experience that I was going to have, and I was going to just deal with anything.

    Bill 11:18
    I’ve never been so focused and so comfortable with somebody opening up my head, you know, ever like it was just so amazing. And the issue for me was that when I woke up, I had left side numbness, so it wasn’t paralysis, per se, but it was more sensory neuron issues.

    Bill 11:44
    Therefore, the neurons are kind of a little bit sleepy, they don’t know when my foots on the ground, I don’t know where my hand is in space, and all that kind of stuff. So I had to learn how to walk again, and all that kind of stuff.

    Bill 11:55
    And I’ve got a little bit of left side atrophy and all the stuff that most people had a stroke talk about with one of their sides. And for me, I didn’t even think about it for a minute as if I shit now I’ve got this atrophy stuff. It’s like, Okay, this is just the next part of the process.

    Bill 12:16
    This is just the next thing that I have to get through and overcome. I’ve never thought about, I can’t walk again, I never thought about I might not walk again. It just did not enter my mind. It was just like, what’s the next job? This is the next job I get on to it. Let’s get that done.

    Bill 12:30
    So perhaps I would have had a different outcome or outlook if I did end up being permanently in a wheelchair or for a longer period of time. But I don’t know, it just didn’t occur to me. When you were preparing for that second surgery. I know you put him up against the wall on that. But what were your feelings, saying and doing to you like? What was the feeling like?

    Emily 12:58
    So something I think we have in common, which I like about you is the acceptance, but also a little bit of the kind of fed-upness with what resources we have out there, which are very limited.

    Emily 13:12
    And just being in this position. And we really have to advocate for ourselves to get anything done. So the first time was surprise and grief happened years went by five years went by I didn’t expect to have a recurrence of the brain tumor, right.

    Emily 13:30
    So that was a big shock when I got the yearly scan and they saw a little something. I was very cool in the same kind of way you’re describing because it’s like, well, I guess I’m just a brain tumor person. I didn’t avoid it, I almost avoided that. But if that’s just not my path, now I need to monitor it for the rest of my life.

    Emily 13:51
    Like that kind of gravity hits you. But what do you do? You know, like, that’s just how it is. And again, through all of this, I’ve found myself and with all the stories shared online, I’m so grateful for Instagram, which is a funny thing to say. But I had no I didn’t know anybody when it happened to me right until I started looking online.

    Emily 14:15
    I lose my train of thought sometimes. Which we probably all go through the advocating for ourselves.

    Bill 14:34
    Let me takeover, it’ll come back to you.

    Emily 14:36
    I knew this would happen. We’re just dealing with it. At this point. We find a place of peace with it. So I was fueled that way. I went to I’m now a cancer patient. Oh, that’s what I was gonna say, I feel so lucky, after hearing everybody else’s stories, that I still feel like I got it a little better than others.

    Emily 15:18
    Maybe because my brain tumor is practically benign. It’s not an aggressive cancer, it could always be worse, right? So, always remembering that and realizing that I was given this because I can manage it, kind of as a perfect person to give this stuff to.

    Emily 15:41
    That’s what kind of hit me the second time that I realized that I have to have my brain cut into again. And however, when I did leave the consultation, because I was at the consultation, I saw that man for the first time in years. And yeah, we never really talked about it. I don’t know if that happens to other people.

    Emily 15:59
    But your neurosurgeons, if something goes wrong. Sometimes we don’t hear a lot about what happened. And you’re kind of left to wonder, and I didn’t get closure for a long time until that day. Like we’re not there anymore. Like if you’re gonna go back in there, I need to trust you.

    Emily 16:15
    So in consultation with my mom and dad. I was like, okay, what’s going to happen? Blah, blah, blah, like, how are we going to do it? And then when I drive home from the initial MRI, when they’re getting ready to map out my brain surgery, I have a complete freakout.

    Emily 16:29
    All the walls crap crumble down. And I was like, how could I possibly let someone into my head? Like are there possibly other options? I can’t like what if it happens again, I was scared. I had a big freakout moment, I think I was just crying on the drive home.

    Emily 16:46
    So that’s what I called him and not sleeping backwards advocacy thing. Because it’s really unfair that neuro patients don’t really get an in-depth explanation to what is about to happen to us. What did happen to us, right?

    Emily 17:04
    So before I told him, I was gonna rip that surgery off the schedule. Unless he treated me with the same respect as what a colleague and explained to me with technical terms where he’s getting into, I mean, you know, like all of us stroke survivors are basically neurologists, at this point, we are brain experts, we can be doctors.

    Emily 17:25
    Like, it’s not like we’ve studied ourselves, because nobody tells you anything. So I was like, you’re gonna use technical terms, I want to know where you’re cutting in, I want to go beginning to end process, I want you to tell me this part of the brain, nothing happens there.

    Emily 17:37
    Like what, you know, if it were to bleed again, what am I looking at? And he respected that. He walked me through it, just like a med student. And he confirmed that that little interior part of my temporal lobe basically has no purpose. So if something were to go wrong, there’s like no chance it can bleed somewhere else.

    Emily 17:59
    So I’m like, okay, we’ll do it. But that’s the confidence and like the power I’ve come to build over time, with not getting any answers in the medical community much. you’ve explained in other podcasts like you feel like nobody, like people don’t know what to do with you. Half the time, there’s not the resource that we need. Especially if you’re a young stroke survivor, we just thrown for a loop.

    Conversation Before The Surgery

    Bill 18:27
    Because it’s all the people dealing with you. And when you’re a younger stroke survivor, they can’t relate. Most of them are neurosurgeons and doctors, they can’t relate to normal people anyway.

    Bill 18:39
    Almost impossible to relate to a young patient, you have to be a really unique person, you know, my surgeon, what you just described that you needed is what I needed. She had me an hour before I was in surgery, in the room in the consulting room with all her team, all the guys and gals who are going to cut me open at some way shape or form.

    Bill 19:03
    And asking them in front of me with my scan on the screen. Show me where the entry points gonna be. And the guy, one of the guys goes here, and then she goes no, and hits him, like gives him the elbow and he goes, no, that’s not the entry point. We’re not going in through there.

    Bill 19:23
    We can’t go there if we go through there, what are we going to get to or what’s gonna happen? And he’s freaking out in front of the patient and, you know, his colleagues and everybody, and he got it right. He fumbled through it and he got it right.

    Bill 19:36
    And I just looked at her and she looked at me, and I thought, Oh-oh hopefully she’s gonna be there telling him No, no, no, that you got to go around the corner go the other way. Don’t go that way.

    Bill 19:46
    So I got that was great. I had a insight into what they were doing, how they were doing it. What I didn’t know was, what the impact might be because of course, they can’t breathe. addicted, so they don’t really tell you. And then when I woke up, I realized that I had these issues.

    Bill 20:06
    And from the, the, and what happened to me was like, Hmm, I wonder that part of the brain and they’re part of the brain? What does it do ask the same questions that you asked.

    Bill 20:16
    And then I put that in a PDF. So somebody can go to my website and download and download a document, it’s free called Seven Questions To Ask Your Doctor About Your Stroke.

    Bill 20:28
    And it’s those questions that I wanted to ask, which was, okay, so, you know, where that stroke happened? What does that do to a person if they get affected there? And a couple of other questions.

    Bill 20:39
    So I feel like maybe there’s only that we’re unique, there’s not a lot of people that are as curious as we are, and need to know all the answers, I certainly have seen that lots of people just put all the faith in the doctors. And that’s kind of okay. When you’re not sure about how to approach things, perhaps, and you’re scared or whatever.

    Bill 21:05
    But I don’t trust people a lot, you’ve got to earn my trust. And if your approach is wrong, then I don’t care how gifted you are, and how amazing a surgeon you are, and how much they say you’re the best in the planet, like, I’m not going to rate you if I can’t trust you, I’m not going to rate you. So that’s my approach. It sounds similar to you.

    Emily 21:29
    I, I truly think those resources will make a big difference. Because I think it’s fear. It’s not always just, oh, maybe, you know, we just grew up more curious, or we read more books or something, you know, on our minds just go there.

    Emily 21:49
    But there is that? Well, I trusted my doctor too the first time because truly I know nothing at that point. You know, brain tumors are not on my list of things to research. So, but the fact that we’ve learned from that, and if we even have a one chance of changing somebody’s recovery, because we empower them to ask the right questions to not be afraid. Doctors are very intimidating.

    Intro 22:16
    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse, or doctors will explain things.

    Intro 22:35
    But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you, it’s called the seven questions to ask your doctor about your stroke.

    Intro 23:00
    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition. And they’ll help you take a more active role in your recovery. head to the website. Now, recoveryafterstroke.com and download the guide. It’s free.

    Emily 23:19
    There’s some real sad stories out there of people that do not get the care they need. Because they don’t know how to ask they’re too afraid to ask. So I think it’s really important work you’re doing.

    Emily 23:30
    And that’s one thing that really breaks my heart connecting with other, you know, survivors online. Some people are right at right at Ground Zero. And I just talked them all night. Until you gotta do this, you got to do that.

    Emily 23:44
    Like don’t let them tell you that. Like, we just have to take what we’ve learned and give back because that’s really heartbreaking when someone falls through, you know, and you know, they could have had a good recovery.

    Bill 23:56
    Yeah, that mentoring kind of role is really useful. And that’s basically what I try and do now after stroke, because you very rarely get to speak to somebody, as they’re about to go into surgery or before surgery, you very rarely get to speak to somebody about that.

    Bill 24:11
    But I definitely feel like we need to mentor more people that are seeking support and answers because we know we’ve been there, right? So that’s what it’s for. So you know, I went into I was afraid and all that kind of stuff. But I went into my first few meetings with my doctors and said, these are not the right people for me.

    Seek The Right Kind Of People


    Bill 24:35
    So I left that hospital six weeks after my first and second bleeds and I went into another hospital and I found somebody who did suit me who did speak to me the way that I needed to speak to. He taught me what I needed to know about my procedure rather than turn up at the end of my bed, talk about me and not involve me in the conversation.

    Bill 24:57
    It was just wrong and it was old school. And things are changing, and they’re moving on. So I feel like people that are listening to this who feel like they need to be more empowered, just seek it out, seek it out from wherever you can and don’t listen to people tell you things you don’t want to hear.

    Bill 25:18
    If you’re being ridiculous, and they’re telling you something that you have to hear, but you don’t want to hear it, that’s different. But if you’re not feeling them, you know, if they’re not your kind of person, don’t go down that path.

    Emily 25:34
    That’s very good advice. There have been a few times on my grief journey, you know, after 2015, where I’ve looked at other hospitals that have this new like, kind of brain surgery, this new device, or this whatever, they’re on the West Coast I’m in, I’m on the East Coast, you know, I’m like, oh, man, if I just said, can I think about it?

    Emily 26:02
    That night? Of course, that just wasn’t the environment I was in it was an emergency. He said, I’m going to take care of it in two hours. See you in the morning, you know, and we’re just at the mercy sometimes so. But if I knew, because I heard other people talk about this, then I might have said, like, I’m gonna think about is it gonna kill me tonight?

    Emily 26:25
    Like, well, but we don’t know. But if I could have had another minute, I wonder if it might have gone differently. However, I also regret nothing. Because I really have found the journey, irreplaceable, and I love where I am today.

    Bill 26:45
    Yeah, a bit weird journey to find the replaceable, you’re supposed to go on a trip to a beautiful island with crystal blue waters. That’s unbelievable and amazing journey.

    Emily 26:59
    We could still do that, though. With the right attitude.

    Bill 27:04
    Yeah, I love it. It’s really cool. So when you woke up from surgery, you had to overcome some physical deficits, what were they?

    The Six Months Deadline


    Emily 27:15
    So I had just classically presented, hemiparesis face arm leg, everything on the left side of my body, my tumor was removed over on my right side here. So they noticed as I was waking up that I wasn’t moving. And I was transported to the nearest Rehabilitation Hospital.

    Emily 27:43
    And I spent a month there, just getting back on my feet. Walking came first, you know, they try to get you up on your seat. Which I also think my age made a difference, thank goodness. But I spent about a month in the hospital. And that’s where I learned other things that made me frustrated about hospitals and stroke recovery.

    Emily 28:07
    Like wanting the answers, then when you’re in rehab, and you’re learning about your new body, and you’ll have people telling you exactly what to do or what not to do. And you just trust them. And years go by for you and I right and I’m reading more things about the complete opposite that you could have tried. Or, you know, you’ve heard the dreaded six months deadline, right? Don’t you hate it?

    Bill 28:37
    I hate it with a passion. It’s so bad. What is gonna happen, you’ll probably be like that for the rest of your life. You’ll never walk again. All that stupid shit that your doctors say it’s just, it is pathetic. I can’t believe it. It still happens. It happens every day. If I make a post on Instagram and ask did your doctor last week say this? I’ll probably get a million responses saying yeah, they did. Don’t believe them.

    Emily 29:04
    Nothing is more depressing when you’re already dealing with. I don’t even know the word for what that is. When you wake up and you realize your body left you in a way and you suddenly can’t walk and it’s an it’s a? I don’t know. Maybe you have a word for it.

    Emily 29:23
    But I don’t um, but the depression sets in motion the shock? shock? Yeah. So nothing more depressing after the shock factor of someone telling you. Oh, by the way, if you don’t get better in six months, that’s all you’re gonna be. To which I’ve learned by example, and by seeing so many beautiful people just kick stroke strokes ass. Like that’s not the case.

    Emily 29:49
    Why is that still the narrative? And I’ve spoke on this a few times, like a few times when I ever get to share my story. I let people know that just the average crowd. That that’s what People with stroke or history, brain injury, anybody with paralysis get this death sentence, which is why I’m so passionate about helping people get up out of bed.

    Bill 30:12
    I tell people, don’t tell me what I can and can’t do. Please don’t give me your limitations. I’m not interested in hearing that. I’ve had other people who I’ve coached to have said that to their, rehab therapists, you know, and when they’ve referred to, for example, the arm has the bad hand or the bad leg, or as I don’t call it bad.

    Emily 30:35
    It’s fine it’s beautiful.

    Bill 30:40
    It’s what we’re working on things, but don’t call it bad it hasn’t done anything bad.

    Emily 30:46
    Gosh, I mean, there’s got to be a, they have to do better. You know, we all have to do better with how we talk to stroke patients.

    Bill 30:59
    Part of it is their own. Well, firstly, they’re not a stroke survivor. So I get that part they don’t understand what we’re going through. Secondly, they, just kind of, in order to understand what they’re doing is they’re saying a word, to get feedback for the word, they say, to understand like, how to try and approach the situation.

    Bill 31:24
    For example, you know, it’s like, it’s like, when you tell a child, it’s like, you tell the child, instead of hold the glass tightly. So it doesn’t fall, when you’re walking with it, you tell the child don’t drop the glass. And in order for the child to actually understand what the hell that means, because they probably never heard that conversation before, they have to drop the glass.

    Bill 31:53
    And now they know what don’t drop the glass means because they have to have the experience to be able to respond to it appropriately. So the people who are caring for us, they’re on the other side, I’ve never had this experience. They’re saying, Look, you’re not walking now.

    Bill 32:11
    And I hate to tell you, I don’t want to be the one to tell you. But I don’t want you to get disappointed in the future. But you might not walk again. That’s like, no, no, that might be the case. But still, you don’t need to tell that story, you don’t need to be the one who takes the responsibility to give me that information.

    Bill 32:35
    You need to say to me, that here are your challenges. And here is how previous patients have overcome them, and choose the ones that had a good outcome to set me up for a good outcome. Don’t choose the ones that didn’t have a good outcome, because they are completely different than me that are completely different strokes, they have completely different resources, all sorts of things. So don’t do that.

    Emily 33:01
    These words, that the doctors and nurses and physical therapists and some of them use, and of course, I have much respect for our nurses and doctors. And you know, they kept us alive, they changed my bed sheets and stuff. I love them. But the words the education, the continuing education on how far people go after stroke these days, like needs to be integral in the hospitals.

    Emily 33:35
    Because the more people I see or meet or talk to, especially when I see them not walking, yet, they’re still in a wheelchair because I want to get them maybe on board with the freedom to wealth foundation and get them a device or something. When I see that I talked to them.

    Emily 33:52
    And they just some people just take the sentence they’re given, you know, and maybe they don’t have the full family support, you know, carers have a hard time or maybe there are no carers. And I’ve talked to people young people like in a nursing home, because that’s the only option they had. And they think like that’s it for them because someone told them that.

    Emily 34:18
    And we have to undo that. Because you could have a device, you could not have a device, you could have medication, no medication, whatever, you could have access to anything. But if someone tells you like no, that’s the end for you. It doesn’t matter what access you have, because you’re not even going to have the spirit to use it. And it’s so heartbreaking.

    Bill 34:38
    Yeah, to not have to undo that that work. Then it is to set a very cool, lovely intention and a great possibility and provide hope. You don’t have to undo providing hope. But you do have to undo the shit that somebody implants that’s not real. And when the person as well is that their most vulnerable? They just came out of surgery. You know, they’ve got a hole in their head, you know?

    Bill 35:09
    Give them a bit of time to overcome some shit. You know, they just got out of surgery.

    Emily 35:16
    Absolutely. I’m so glad we can curse by the way, I’ve been holding myself back.

    Bill 35:19
    Yeah we can say a little bit of shit. This one is a real passion of mine like I do I get really frustrated about it that annoys the heck out of me. And I don’t to mince my words about it. There’s no point because people don’t appreciate, you know, when we’re being polite people think, Oh, he’s alright about it.

    Bill 35:38
    No, I’m not alright about it at all. I’m really annoyed about it, it happens too much. And it happens to too many people. And I’m here to tell you that you need to not do that. And it’s you that needs to change not that person that’s in the room, that’s there for you to help them.

    Bill 35:54
    You need to advance your intelligence, so that you’re a better therapist, so that you do not implant negative thought patterns of your own into your vulnerable patients.

    Emily 36:10
    100%.

    Bill 36:11
    And if I have to say shit, while I’m talking to you, I’m gonna say it. And if you get offended, that’s your problem. So that’s my little rant over. So yeah, okay, so you had to, you had to do a fair bit of rehab. So, you’re in rehab for a month, and then you went home was ir outpatient rehab? What was life like when you went back home? Because that was completely different?

    Coming Home After Rehab

    Emily 36:42
    Well, I’m 25 years old, living in my own apartment or condo at the time, I went home to mom and dad. So that I mean, if I didn’t have my family for support and being the positive cheerleader, then I don’t know where I would be.

    Emily 37:02
    So I was very blessed to have that family. That was, you know, happy to go on with mom and dad and try not to think about that. I’m a 25 year old with a cane. And I just got the call every once a while my where’s my cane? It’s just funny. You gotta laugh.

    Emily 37:16
    Yeah, I mean, when you go home when I finally deem you, not a fall risk, right, I left with a cane. And I fo brace just the type of getting in the hospital, I got a better one and outpatient to start kind of walking a little more. It was a little stressful. My cares, my wonderful, sweet parents had to watch me 24 hours.

    Emily 37:43
    And I’m not in a good mood, of course, because there’s all sorts of things happening. I’m teaching. My goodness, I was like, What am I students doing right now? As if I needed to care? I didn’t need to care. But it’s in, you know, it’s ingrained in you of like, How can I be away from work this long.

    Emily 37:58
    So it was a lot of just being helped to the bathroom, being helping fed, going to outpatient rehab. And really just kind of understanding this new part of existence. I didn’t know how long it was going to take. I didn’t know. Everyday was kind of a, you just go through the paces right?

    Emily 38:22
    But something and I love to hear these stories about folks with their carers, is that for me, I was sick of it very quickly. I knew I could walk with a cane. So I’m like, what’s with this 24-hour watch thing. And pretty shortly, to my mother’s dismay, I was taking calculated risks for myself that I think you mentioned earlier, which is about kind of just empowering yourself trying things, to find out if you can do it.

    Emily 39:01
    That’s how we’re going to recover. It’s not by someone telling us what we can and can’t do. You have to find out for yourself in the safest way possible. I do. Even though, even though I like to say that I had a big dose of F this, I’m going to do what I want. I still made sure I was doing it either observed or safely, I wasn’t being too reckless.

    Emily 39:22
    So it wasn’t very long before I told my mom, I’m like, I’m gonna make my own breakfast today. And I walked over with a cane and I hung out on the counter and I just had like a bowl of cereal.

    Emily 39:35
    But I tell you, when you make that first bowl of cereal for yourself, and you take a piece of your independence back, that is the start of it. If you can do that, you start thinking about well, maybe I will wheel myself to the bathroom. Maybe I will walk with my cane to the bathroom and then suddenly you’re on this snowball of like did it did it, did it.

    Emily 39:59
    It’s not that’s scary, it is scary. But once you achieve these little things, they start to add up. And before you know it, I walked down the stairs by myself. And my mom yelled at me had a heart attack. But I ended up on the bottom floor without anybody knowing about it.

    Emily 40:22
    But that’s such an integral part for me, because that’s when I knew I had to not limit myself because of everyone else’s fears around me. They fear out of love, of course, they don’t need me falling down the stairs after a brain injury.

    Emily 40:42
    But sometimes, listening to those voices and reading that material, and just will prevent you from trying, and then it’ll prevent you from having this having an amazing recovery that you might not have gotten to have. If you listen everybody else.

    Bill 41:00
    It’s like the old days, isn’t it? when you were growing up when you were little, you know, you go to climb a tree, and mom and dad would sit at the bottom of the tree the first few times and make sure you didn’t fall in the third fourth 10th time. They’d say look just be careful, you don’t fall.

    Emily 41:16
    Yeah, also gave me a heart attack, I’m sure.

    Bill 41:19
    But that is, it’s not that they’re scared for you, because they love you or like, they’re scared because they’re scared, because they can’t relate to the whole situation. And they don’t know what it’s like, again, and they see you as vulnerable and they see you as you know, injured or whatever they see you as and then they try and go.

    Bill 41:48
    We don’t want her more to have more of that, you know, we want to have less of that. So if she doesn’t go down the stairs, then should we Okay, well, how long am I not going to go down the stairs for? How many years I’m gonna sit at the top of the stairs and look at them, you know, it’s not how it works.

    Bill 42:04
    And and you’re right, that’s what you do, you kind of have to go against authority or against, you know, the emotional blackmail, or whatever it is, and you got to put your toe in the water and you got to see is it gonna burn? Is it gonna? What’s the situation? And then if you overcome it, then you can go well, how can I do that again, next time, or what is the next biggest risk.

    The Small Steps

    Emily 42:29
    And that’s the best so that mastering of my own house and testing the waters and saying sorry for upsetting my because she’s my mother. I’m not sorry for taking the risk, but I’m sorry, she got upset so much. And just you know, balancing your household with your carers and keeping open communication of what you need and what you need to do is very important.

    Emily 42:59
    So what that led to was being trusted with more movement. I had my AFO at that point. And my cane. And I started with a walk around the block, a hobble around the block, you know, whatever. But at that point, I had enough fed upness and kind of anger in me.

    Emily 43:20
    I was like, I don’t care what I look like, I’m gonna get walking. So I took my little cane, and they walked around the blocks, you know, I was going by myself. And soon I was going without the cane. You know, and that’s that level up that stroke survivors can do, just by testing the waters, like you said, and not being afraid of upsetting anybody. not being afraid of your own body. You know your body better than anyone else, no matter who they are.

    Bill 43:49
    And did you ever fall?

    Emily 43:50
    You know, the only falls I’ve ever had was one in the hospital where the nurse drop me. And I have had one or two falls. Only when I started practicing jogging. Because I got there. After taking these baby steps. I was like well I can do that. I had my dad with me the first time I did it safely.

    Emily 44:23
    It was more of like a old man shuffle you know in the beginning, but it’s something and the more you practice, I mean practice makes permanent in the brain injury world. So yeah, I’ve gone a little cocky and years later and tried to run on maybe a little tired left ankle, and I’ve definitely eaten pavement but and then I stopped so I reel it in and make sure I’m being as safe as possible. That’s it. I didn’t fall.

    Bill 44:53
    That’s not too bad. I got dropped by nurse in hospital as well. Probably four hours after surgery,

    Emily 45:03
    Oh my God the paperwork, imagine.

    Bill 45:06
    I don’t know that there was any. It was really bizarre, right? So my left side’s out of action, and then they, come to get you up to take you to the toilet for the first time, all that kind of thing then when you’re moving straightaway, and they haven’t assessed me yet nobody knows what the impact of the brain surgery has had what impact that’s had, and she was, I’m not quite six foot, but maybe 10 or something 5 11″.

    Bill 45:36
    And she’s maybe five foot. And she said to me, have you been to the toilet yet? And I said, no, she goes, Oh, let me help you out. I get out on the left side of the bed because she happened to come to the left side of the bed, I put my left foot down. And she says, I’ll hold you and she does the whole you can put her arm around me.

    Bill 45:56
    I’m 84 kilos or something, and she’s 50 kilos. And I just, we took one step and I just went bang straight on my arm. And I screamed my head off. And it was shock horror. Everyone was just shocked. And I’m not sure what happened. But they must have all swooped me up and got me back in the bed. And then they brought me a pan or a bottle or something like that. It wasn’t gonna happen any other way. So was your fall in hospital? Was it the first surgery or the second one?

    Emily 46:32
    The first it was the first surgery the first surgery led to the stroke. My second surgery was great. I walked out. hours later. Thank God. Yeah, it did go as well as it was supposed to. It was just a normal brain surgery. But no, that was the first one it was in the rehabilitation hospital.

    Emily 46:50
    And it might have been like, it was like a new nurse maybe or something maybe not my first trip to the toilet in my room. But it was somebody Oh, you know what it was like, we’re bending down to get graphic. We’re, you know, bending down because that’s tough. And she’s taking your weight. And she said 123 but like I went on three and she went on two or something.

    Bill 47:16
    You didn’t discuss the number count beforehand. So we’re gonna go 123 and then go or we’re doing.

    Emily 47:23
    It was a soft fall. Thank goodness, it was definitely like I had, you know, my right arm was on it and stuff. And I was like, Okay, here we go.

    AFO For Foot Drop

    Bill 47:32
    So you told me that you got back into jogging. So you’re going to really appreciate Episode 28 you’re going to be Episode 148 or something. 147. Episode 28 was Donna Campisi. And she’s a local and she was a friend of mine from Melbourne, came and saw me when I was in hospital.

    Bill 47:57
    And she had a stroke when she was a young kid. And she ran a marathon about 30 years later. And she wanted to jog and run she has an AFO okay, so for those who are listening, an AFO is an Ankle Foot Orthosis. So it supports the ankle from dropping down. Because she has foot drop.

    Bill 48:20
    And she runs a 40 kilometre marathon full marathon. She She trained and trained and trained, she got injured she got she went through the wringer to get there and she finally got there. And when she got there, it took her forever, you know, compared to everybody else who was running, but she made it she ran the whole marathon.

    Bill 48:39
    She’s just one determined gal. And you’d love that episode. You’d relate to that a lot. I’ll share the link on the show notes. And I’ll send you the link as well. So you can have a listen. But how far have you gone from you know, if you’re jogging? How much has it evolved?

    Emily 49:00
    Well, I started maybe a year after I really kind of got a pace going. And there was actually in 2016. There. I’m near Washington DC, currently. So there was a race for a cure for brain cancer research. But what a perfect reason to get my butt up and be able to complete free miles.

    Emily 49:33
    So that was my goal. I also saw a few others on Instagram that took two running after their stroke or they have a history of stroke and their runners and ultra-marathon runners and marathon runners. Oh my god, oh my god. So I did talk to a few of them. I was like, does your ankle hurt?

    Emily 49:52
    Do you ever fall like and of course they say Oh, it hurts all the time. Just go. Just do it. And that’s where I adopted the whole If you feel something, then it’s good. Like this is just muscle growing, you know, it’s got to grow back, it’s got to get strong, you got to test it.

    Running A Marathon With A Foot Drop

    Emily 50:07
    So that was my attitude. And, I did successfully complete a 5k no walking, no walking, you know, just that shuffle sometimes after my stroke in 2016. And that was incredible, because, that was one of the things I was dreading was never being able to run again.

    Emily 50:33
    And taking that for granted, just like being able to move your body in that way. And I still, you know, it’s very careful, I don’t run regularly, because I found bodybuilding, which is much more static and so, so I really enjoyed that. But, um, I was worried about that.

    Emily 50:54
    And I still, you know, years later, part of a little grief moment comes when you can’t just sprint, you can’t just go run for the sake of running, you have to think about every step you take, you have to be careful, you have to, you know, and that’s a bit sad. But that’s me being picky.

    Emily 51:17
    Because I know that me running at all in any sense of the word, and whatever it looks like because you know, my arms flopping around all over the place, and I’m limping mostly, it’s such a beautiful achievement to have done after going through a stroke. And I’m so grateful for that.

    Bill 51:35
    Absolutely. I know what you’re saying I I was asked recently, you know, don’t you ever think about the fact that you’re always feeling your left side feels weird and colder and, and burning? and all that kind of sense. Like, most days, I don’t think about it, but sometimes I wake up and I think Yeah, I wish it didn’t bloody happen. You know, I wish it just felt normal today, because it’s bothering me or annoying me.

    Bill 51:59
    But that kind of wishes, like doesn’t achieve anything. It’s fruitless. Like you don’t get anything out of it. You just wish something that’s never gonna happen. So you get frustrated. So you have to accept that as well. And some days it’s okay to not accept it and to be crappy about it and to, reminisce on your old self. Absolutely. I mean, there’s nothing wrong with that. I’ve been there.

    Emily 52:21
    You know I heard a really great saying from one of my colleagues, she has a pastor for father, right. And he said to her, and I love this regarding these pity moments, we’re allowed to have for sure, but we don’t want to get trapped in it for too long, right? She said, her dad would always say you’re allowed to have a pity party. But it has a beginning and an end time.

    Bill 52:50
    That’s perfect, isn’t it? I mean, that’s it. Thank you for the permission for me to go down that path. And thank you for giving me time to get to my in time and I’ll eventually get there and then I’ll move on and be fine.

    Bill 53:03
    You found bodybuilding. But were you a you were you a bodybuilder beforehand? Did you do any of that?

    Emily 53:11
    No.

    Bill 53:13
    So you’d really also then appreciate and get along with Kelly Studebaker who was on episode 106. And she’s a powerlifter. And this girl she is jacked on one side other side is not so jacked.

    Emily 53:30
    That’s the life.

    Bill 53:32
    And then she got sucked in as well because somebody said to her oh you know, you could probably still do it with one hand, just give it a go, whatever. That’s it. She just got into it. And she was off and running. So now on episode 106 I interviewed Kelly and that is a really cool episode as well so I can’t remember exactly how she ended up having a stroke but it’s a really cool episode check it out now.

    Freedom To Walk Foundation And Bioness


    Bill 53:57
    You’re still a real busy person. He doesn’t sound like you’ve slowed down at all You picked up a cheeky directors role or Board of Directors role at the Freedom To Walk Foundation, which is on Instagram as well @freedomtowalkfoundation. And I’m so glad I connected with you because I didn’t realize this until today. But this is really cool because of the Freedom To Walk Foundation supports people with foot drop. Tell me about it.

    Emily 54:31
    So I met the Freedom To Walk Foundation because when I was getting my newer AFO device at a Hanger clinic in Baltimore, Maryland, they handed me a pamphlet and they said you know you’ve seen some pretty good ankle movement. At this point we can tell you’ve been walking. So you might be a good candidate for the walk aid, which is one of the two leading competitors of a functional electronic stimulation device, FES device.

    Bill 55:04
    Who are the competitors, because I reckon people have heard of them.

    Emily 55:07
    The ones that we help people we subsidize the cost for is the walk aid, which is actually owned by Hanger at this point. And Bioness, Bioness has all sorts of fun things, they have a cuff for walking and foot drop, they have arms attachments and all sorts of things, which is really cool.

    Emily 55:28
    So, yeah, so I got in touch with the freedom to walk foundation. And at that time in 2015, and still, insurance, major insurance does not cover these devices, it is a travesty. That device was $5,000 out of pocket, when I was able to grasp it at that time. And I couldn’t tell you how devastated I was to hear that price tag.

    Emily 55:53
    Because what else could go wrong? Like at this point, you know, it’s like that’s, like I could get some physical therapy, or I could take a chance on this walk aid or, or I don’t need to pay my bill, I can move in with my parents. And it’s just the kind of decisions that people don’t need to be making when they’re vulnerable.

    Emily 56:12
    So I can’t hide the freedom to walk foundation. They have an amazing founder, her name is Daisy Vega, and she is an MS. Warrior. So when she developed MS, she developed foot drop, which we might have said earlier is where your ankle muscles are weak, and you end up dragging your toe and you might trip over yourself.

    Emily 56:35
    And you’ll see people walk with kind of a funny gait where they kind of lift their leg real high to avoid your foot dragging on the ground and happens with a lot of neurological chronic conditions. So her, I think it was her husband, who was able to just afford it straight out, he got her walk aid, and she’s such a giver.

    Emily 56:55
    She’s such a great woman, she decided to create the foundation to try to reach others that need assistance at this walking and subsidizing the cost. So because she doesn’t want anybody to go without it. So I got to call her and we fundraised, we did a just a typical GoFundMe type of fundraiser I shared with just my family and friends and I was really embarrassed about it.

    Emily 57:20
    And I didn’t want to do it. But she, you know, asking for help. Suddenly, you’re put in this vulnerable position, not me, not Emily, like never before. And asking for money is the worst, you know, but what we do is, we really encourage folks to try it. And what almost happens 99% of the time is that their device is funded within two days, by their community, their family, and the love around them they never knew existed.

    Emily 57:55
    And that’s what happened to me. My friends and family and schoolmates all helped me subsidize that cost. And I had a walk it and I tell you, that’s what I attribute to getting me to the jogging point. It was, if you’re not sure what a walk aid is, it has I mentioned in my little stimulation kit over here, so I could show the camera, but I did it. It just has two electrodes that will sit in a cuff is very discreet, it’s not huge, like a AFO, you don’t have to wear it over your clothes, you can wear it under your clothes.

    Emily 58:26
    Which is a cuff that sits right below your knee, and it stimulates the right muscles. But what’s great about the technology is that the clinician will program it to your gait. So with the swing of your affected leg, it will buzz on with this kind of weight teetering system.

    Emily 58:44
    And suddenly, with every step, you take the electrodes just lift your ankle for you. And you can set it on Max, you can set it on min, because the point is, you want to think it through you know, we’re always thinking about every step we take. So you want to help sink it into existence.

    Emily 59:03
    But over time, it’s like you’re taking physical therapy with you everywhere you go. And you don’t have to think about physical therapy. So the fact that these people don’t know about these, first of all, there’s I don’t have access to them. They’re way too expensive, is just heartbreaking.

    Emily 59:18
    And that’s what Freedom To Walk Foundation helps remedy. So yeah, so I was a recipient, it got me to running a 5k I believe in them. And I did some testimonials at the Freedom To Walk Foundation gala in Florida. They’re Florida based, but we help everybody around the US.

    Emily 59:38
    We’d love to go international too. It’s just who we meet, you know. And by last year, they were looking for more volunteers on the board. And I was elected a board member. So now I help direct the operations of the foundation as community outreach. I’m a big advocate. I find them on On Instagram, I have a great eye for foot drop, in the grocery store and out in the world I’m like hi have you ever heard of a walk aid? Sorry to bother you.

    Bill 1:00:09
    You know what they look like? They look like a strap that people put their iPhones in. When they go running and they’re listening to the music. That’s exactly what they look like.

    Emily 1:00:28
    It’s just a little cuff and a battery pack. It’s really incredible technology.

    Bill 1:00:33
    And these days, I think it’s cool to have stuff attached to you when you’re doing things. Makes you look like you’re with the times or something. The website is freedomtowalkfoundation.org. And they’ve got a really cool looking website, easy to navigate a lot of pictures of the product.

    Bill 1:00:54
    And then can either talk about their purpose, and they asked him for donations there. And they also have a really cool little statement that says changing lives one foot at a time. Isn’t that lovely? Yeah, it’s rewarding, isn’t it?

    Emily 1:01:19
    You know, we were talking about this, before we started how I’m so inspired by people who take the shit that happens to them. And they turn it around to help others. They learn from it, they accept it, and they don’t want other people to go through the same thing they did.

    Emily 1:01:41
    And I think that’s a really beautiful part of the healing process. It can be and it’s just it, it gives them purpose, maybe you know, to what happened to you. Some people like to think of it that way like it gives, instead of wondering why why why me, you may be able to formulate an answer to that, as you realize that you’re a key. You might be key in somebody else’s recovery is really beautiful thing.

    Bill 1:02:10
    That’s a pretty cool, why me I mean, that’s better, nothing better than that. If you’re supporting somebody to go through what you went through, because you’re further along the line, and you know what it’s like on the other side, then that’s a real good reason to get involved and help people and it is really rewarding.

    Bill 1:02:29
    I find the same thing when I do these podcasts and chat to people from all around the world like you and everybody else. One, of my biggest challenges is the lack of men who come on the podcast, that’s one of my biggest challenges is I asked a female to come on and she Yeah, no worries, they’re falling over themselves, you know, I can’t keep them away, which is not common in for me in my life.

    Bill 1:02:53
    Normally females repelled you know, except for my wife, she’s stuck with me, but the others just repelled. And men getting them online is so hard A there’s not a lot of them on Instagram doing the kind of stuff that you know, a lot of other stroke survivors are doing.

    Meeting People With Foot Drop

    Bill 1:03:14
    Or if they are they do it in the background. So I’m curious about your experience with meeting people with foot drop, is there a difference to the way the men handle the situation? Or talk about it? Are they a little bit more reserved? Do they? Do they do the stiff upper lip routine a little more?

    Emily 1:03:37
    Well, I like to think that I’m very charming in person. So I don’t think I give them a chance to stiffen up about it. Especially if I if I meet them in person. I first of all, catch them off guard by saying, hey, do you have foot drop? Me too. Cuz they’re like, Who knows? Who knows about that? You know so I do find that after I get that kind of sensitive question out of the way.

    Emily 1:04:04
    And like, I’m Emily, and I want to tell you about this. Then, it’s like, Okay, and then I might give them Freedom To Walk Foundation information. Just sometimes I asked if they’ve ever heard of a walk aid kind of thing. And we might exchange information to get them to the website. But no I’ve never had an issue with talking to someone about it.

    Bill 1:04:28
    I’m not charming enough is what you’re saying. That’s why the men won’t come on board, because I’m not charming enough.

    Emily 1:04:36
    I mean, I feel like that might just see the inherent nature. You know, society has just made poor guys you have to ignore feelings and not fess up to emotions when it comes to mental health and emotional health. They’re already starting behind. And I think that’s probably adds to it. The few folks that runner I initially talked to was a man.

    Bill 1:05:04
    We’re always running away from shit. That’s why men run because they’re running away from everything.

    Emily 1:05:10
    You just got to put them on a treadmill, so they don’t go anywhere. But you know, once you break the ice So yeah, that’s interesting get some kind of recruitment kind of said you got to maybe talk to them privately. First give your spiel.

    Bill 1:05:30
    No I have a podcast I’ve spoken to them enough they listened to the podcast, they just don’t do much about it. If there’s any men listening to the podcast and they’ve got to the end of this one. Hit me up for an interview. Just come on board. Let’s have a chat about what’s going on in your life. I promise I won’t ask any probing questions that are too uncomfortable.

    Bill 1:05:51
    Emily, you vouch for me? I did all right?

    Emily 1:05:54
    Absolutely. It’s been a pleasure.

    Bill 1:05:58
    On the freedom to walk Foundation website as well. There’s some testimonials little Zoey regaining her independence. She’s a little girl. And then is there is George in the walk aid. George Kosinski, his new walk aid. So there’s some real cool ways to get to understand what it is that walk the walk aids do and how they help, especially when you get to see videos of people and you get to see how they are attached to the leg below the knee.

    Bill 1:06:31
    They look like they’re going to be very comfortable for most people I don’t see it being an issue at all. And they’re available. You can follow the freedom to walk foundation on Instagram and Twitter and Facebook as well have all those links there.

    Bill 1:06:45
    So it’s a really cool foundation. I didn’t know it existed. So I’m just so glad. And you need to get somebody from the foundation onto the podcast so I can interview them. Other than you because I know, we’ve brought you on for a different reason. But I can bring on somebody and really give them a lot of time.

    Emily 1:07:07
    Yeah, I could absolutely speak to our founder. It’s a very small nonprofit. It’s run by her and me. And there are four other board members. And that’s it. And so, growth plan, you know if, like, if we’re able, it’s a humble nonprofit, helping, being able to reach a lot of the community in Florida because Daisy is such a networker, and she’s lovable.

    Emily 1:07:35
    Everybody in Clearwater knows about her, I think I’ve, you know, poached people off of Instagram, and we’ve gotten blockades to California and Pennsylvania and things like in Texas just recently. So it’s like, it’s just a little it’s like, just piece by piece. We’re trying to make a difference. So that’ll be one, but she’s really lovely. So that would be fun to get her on.

    Bill 1:07:57
    Yeah, How so? How many people have you guys helped? Do you think with this? How many people a year received support in some way?

    Emily 1:08:04
    Well, last year, we did. I got those folks I mentioned California, Pennsylvania, Texas. We’re also thinking of expanding into any walking aid. Because there’s still folks especially in Florida, which have a higher population of senior citizens might just need a walker, I think Daisy have gotten has gotten a few of those out walkers and canes and things that make mobility more comfortable.

    Emily 1:08:32
    So we’re thinking of maybe expanding to that, say about five, just ad hoc over the over the year last year. And then at our gala, every year, we do identify, usually a child, we try to get a family who’s in crisis with their child that sometimes have a diagnosis of stroke, or cerebral palsy, which the blockade absolutely helps as well. kind of keeps things straight allows them that Zoe on the website, she’s a CP patient.

    Emily 1:09:04
    And so before she couldn’t walk very well around, but with that walk it it really streamlines things and she’s just running. So our main goal every year on the side is to fundraise to have a walkout to give away at the gala per year to a child in need. And then we do what we can on the sides with our small workforce, just as we can.

    Emily 1:09:30
    And I do want to say, I did tell you in 2015 walk aids were going for $5,000. Some good news for all of us is that the walk aid and probably Bioness meeting their cost as well. The walk aid has definitely come down to $2,950 which is still prohibitive for families. So we still want to help and do that work.

    Emily 1:09:56
    But just in case someone’s listening and like you said never heard of it. I think everybody should have one. It’s, it’s game changing for recovery, it is ridiculous that people don’t know what it is that you’re not hearing about it in the rehab hospitals that you know, it’s still privatized.

    Emily 1:10:13
    So I do want to let everyone know that that the cost has come down if you were hearing it, and then you heard $5,000, and you feel sad about that, so down to 2950, on average, and they do include unlimited adjustments, once you get your clinician at hanger, you know, your patient for life, as long as you need it.

    Emily 1:10:33
    I do want to say that I don’t use it anymore. I am a client’s free. Nothing’s perfect, but but you know, through my acceptance and just loving my body, as far as I could take it, and this is me, I wanted to drop all the AIDS at one point, I felt confident that I can get about safely. And so I stopped using it maybe after two years or so. And I said, Well, let’s see what my body can do now that I’ve thought it and the electrodes helped it for two years, I do pretty well.

    Bill 1:11:09
    Can they be repurposed?

    Emily 1:11:12
    You know, that’s something I’ve asked before too, which is frustrating, because I asked, Can I recycle this to somebody? And, of course, it’s not that easy. Because it’s pharma, you know? Or else we’d all be sharing $5,000 stuff like our netflix accounts, right?

    Bill 1:11:28
    It’s like a phone I mean, is if you can’t just give it to somebody else and give it a new strap.

    Emily 1:11:33
    I still have it. Yeah, it just needs to be programmed, I still have it, I keep it because one day, as these things develop and costs and all the insurance crap, and all that stuff happens one day, I hope to recycle it and just give it back to hanger.

    Bill 1:11:47
    I feel like there’s a opportunity there massive opportunity there for all the ones that are out and about that aren’t being used. They can be repurposed for people who can’t afford three grand or five grand. And who could get it for 1000 bucks or whatever. But there’s surely there’s got to be an opportunity anyway.

    Bill 1:12:06
    Look, that’s me just doing my problem solving stuff again, and solving problems and all that kind of thing. And you could harass the manufacturer about that I think you should harass. And if you don’t want to I will, because I think that’s what should happen.

    Emily 1:12:24
    I know one of the top salesmen in the US because he’s come to speak at our gala before, so I know him personally on Instagram. And I should check in. He’s not the CEO, but you know.

    Repurposing Walking Aids

    Bill 1:12:37
    Yeah it’s a good question you know, with all these corporations that want to do better things for the world these days, here’s a better thing that they can do, here’s a something that they can do, that’s going to make a difference in people’s lives.

    Bill 1:12:49
    And they could get a real, you know, little ticks for achieving not just an amazing product and selling it for a shitload of money, but also for having an amazing product, and repurposing the ones that aren’t being used for people who can’t afford it.

    Emily 1:13:06
    I’m gonna take that idea. I’m gonna do at least one action with that and see, see how far I can go.

    Bill 1:13:11
    I love it. We’ve achieved a lot today, we’ve solved problems. I’ve put you in touch with people who are power lifters and marathoners and your we spoke about the freedom to wall Foundation, I really appreciate you being so keen to jump on and share your story and tell us about some of the things that you’ve been through. Thank you so much for being on the podcast. I just truly appreciate it.

    Emily 1:13:39
    Absolutely. Thank you for the platform. This is so important the work we’re doing it really is it’s gone through my head. I know it goes through other people’s heads that, gosh, we should do so much. We should write a book we should get resources on but some of it Yeah, I didn’t do it. But you did and I really thank you for that.

    Bill 1:14:01
    I love what you said thank you for that. I really appreciate it for you acknowledging me, but you did what you did, and you’re on the board of something and you’re doing that and somebody else is doing something ever so simple, which is even responding to an Instagram post that you might not think means a lot and it’s not that important.

    Bill 1:14:24
    But the fact that somebody did do that for me one day years ago, makes a massive difference. And we don’t all have to do podcasts because they’re bloody time consuming and no one’s got that much downtime. Believe me, I don’t either they they take about eight hours an episode to get live.

    Bill 1:14:24
    Like it’s just a huge amount of work, right? So don’t feel bad. If you can’t do that. Do something little something that you can do. Just be nice to somebody just send them a message on insta just touch base with them, just do those things. You’re volunteering in this Foundation, I’m not going to do that, that means I’ve got to leave my house, I’m going to go somewhere else to do that and meet people in person.

    Bill 1:15:07
    And that takes way too much. I’d rather be recording a podcast from the comfort of my own home with heating or air conditioning. You know, I’m that kind of guy. So everyone can participate the way that they feel. And some of us don’t have more limitations than us.

    Bill 1:15:22
    So they don’t have the ability to be so proactive and make it a bed in one hour. And you know what, it’s also really important sometimes to just make it about you and stuff everybody else.

    Emily 1:15:34
    Yes especially at the beginning.

    Bill 1:15:39
    And that’s you and me, giving permission to people to just make it about yourself every once in a while, but have that party, at some point, it starts and at some point it ends. So when it ends, kick in and bringing other people into your world, because what that does is that is also rewarding, isn’t it? And that really makes recovery. And the experience that you had, it does make it a little bit kind of worth it. Would you say?

    Emily 1:16:05
    I said I have no regrets. I love my life. And I know that’s hard for some people to understand. But I know that other survivors like us can understand what I mean when I say that.

    Bill 1:16:17
    Thanks, Emily. I appreciate it. Thank you so much for having me. Thanks so much for joining me on today’s podcast. Do you ever wish there was just one place to go for resources, advice and support in your stroke recovery? Whether you’ve been navigating your journey for weeks, months or years, I know firsthand how difficult it can be to get the answers you need.

    Bill 1:16:39
    The road is both physically and mentally challenging from reclaiming your independence to getting back to work to rebuilding your confidence and more. Your symptoms don’t follow a rulebook and as soon as you leave hospital, you no longer have medical professionals on tap.

    Bill 1:16:54
    I know for me, it felt as if I was teaching myself a new language from scratch with no native speaker inside. If this sounds like you, I’m here to tell you that you’re not alone and there is a better way to navigate your recovery and rebuild a fulfilling life that you love. I’ve created an inclusive supportive and accessible membership called recovery after stroke.

    Bill 1:17:18
    It’s all in one support and resource program is designed to help you take your health into your own hands. This is your guidebook through every step of the journey read from reducing fatigue to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community. Just head to recoveryafterstroke.com See you on the next episode.

    Intro 1:17:44
    Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments, protocols disgusting any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:18:01
    All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to complement your medical treatment and support healing.

    Intro 1:18:18
    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 did not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

    Intro 1:18:38
    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:19:03
    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 Overcoming Foot Drop – Emily Knosher appeared first on Recovery After Stroke.

    1 hr 21 min
  • Living With One Arm – Kate Ryan

    Kate is a childhood stroke survivor and disability advocate. Kate experienced a life-changing stroke at 10 years old, completely paralyzing the entire left side of her body. Through her will to recovery, she developed an inner strength beyond her years, a compassion for others, and a personal desire for recovery. These three qualities gave precedence for Kate’s will to give back to others.

    She is using her unique strategies for everyday living skills to assist others with limited arm movement reach independence.  Kate has an internationally acclaimed book and fun and educational Youtube videos.

    Links:

    Book: Beyond Stroke: Living Independently With One Arm

    Youtube: One Handed Living
    Instagram: instagram.com/onehandedliving/
    Facebook: facebook.com/beyondstroke
    LinkedIn: Kate Ryan

    Highlights:

    00:56 Introduction

    02:33 Stroke At The Age Of 10
    10:45 Post-stroke Challenges
    17:39 Being Treated Differently
    24:20 Today’s Advantages
    34:07 The Power Of Acceptance
    42:30 Living With One Arm
    52:29 Sharing Your Story And Helping Others
    1:00:25 Look For Solutions

    Transcription:

    Kate 0:00

    I don’t want to live like this anymore. I don’t want to live with, you know, being isolated and depressed and just grieving this old life. I don’t want to live like this anymore. And it was like butterflies just lifted away and I just saw the world in a different way.

    Kate 0:20

    And then I was like, far out. I’ve just accepted everything. And I’ve reached that, you know, the grief stage that goes in stages, and I’ve reached acceptance. And I was like, wow, that’s bloody unbelievable, and I did it all myself.

    Intro 0:43

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

    Introduction


    Bill 0:56
    Hello, and welcome to recovery after stroke, a podcast full of answers, advice, and practical tools for stroke survivors. To help you take back your life after a stroke and build a stronger future. I am your host three times strike survivor Bill Gasiamis. And after my life was turned upside down, and I went from being an active father to being stuck in a hospital.

    Bill 1:16

    I knew if I wanted to get back to the life I loved. My recovery was up to me. After years of researching and discovering, I learned how to heal my brain and rebuild a healthier and happier life than I ever dreamed possible.

    Bill 1:30

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

    Bill 1:49

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

    Bill 2:05

    This is Episode 145. And my guest today is Kate Ryan, who experienced a stroke at a young age of 10. And has lived with the inability to use one of her arms since that day. Kate has overcome a lot in the last 34 years and some of the lessons she learned ended up in her first book “Beyond Stroke: Living Independently With One Arm”. Kate Ryan, welcome to the podcast.

    Kate 2:32

    Thank you.

    Stroke At The Age Of 10

    Bill 2:33

    Thanks for being here. I really appreciate it. Tell me a little bit about what happened to you Kate?

    Kate 2:39

    So my stroke happened on June the 9th. So coming up to my anniversary, June the 9th 1987. Where out of the clear blue sky, I was 10 years old and I’ve been in school during the day, and that afternoon at about 3:30 I sort of had a headache.

    Kate 3:13

    And it was quite a bad headache more than usual. And I said to my mother, cause I very young, I said Mom, I’ve got a really bad headache. And she must have noticed something that was unusual. And she said, well just stay at home. Because I was on my way to a ballet class.

    Kate 3:35

    And she said to stay home from ballet tonight. And I said no, no, no, I really wanted to go, I was a very driven child and like to achieve a lot of things and said no I’m going to go.

    Kate 3:48

    So I went to the ballet class, which is only 10-20 minutes away. And I had I just got progressively worse and was only five minutes into the class. And we were doing neck exercises.

    Kate 4:04

    And I was like, I’ve got this headache. I’m going to try extra hard today. And I went over really really far on the right side. And I’m not sure if that has something to do with it or not.

    Kate 4:19

    But yeah, I straight away we were doing floor exercises after the neck exercises. And the teacher said, are you okay Kate, do you want to get a drink? And I said, sure I said yes. And I went up to get a drink, and the next moment I found myself in the chairs at the front of the ballet class.

    Kate 4:54

    From then I was fishing, I was fishing because my

    Bill 5:04

    From the seizure.

    Kate 5:06

    No, I wasn’t having a seizure, I found out later that oxygen wasn’t getting to my brain. So the blood wasn’t going through to my brain and the right side of my body was jumping up and down and, and there’s a secondary ballet teacher, and she was actually holding my body down.

    Kate 5:24

    And that was the absolute worst thing she could have done. So in these times, they didn’t bring an ambulance and they didn’t ring my mom this was before mobile phones, which is crazy when you think about it, because with a stroke, the time it can make such a difference that they didn’t think, you know, a 10-year-old girl was having a stroke.

    Kate 5:25

    So yes, so I laid on these chairs and was just in absolute agony. I described it to my doctors into friends and family as an axe, just going in and out it just felt like an axe was going in and out of my brain.

    Kate 6:05

    After about an hour and a half, they didn’t call an ambulance, but one of the little girls in the class knew the home phone number and they called my mom and mom just came straight.

    Kate 6:18

    And I just remember just going so fast went to the hospital, and local hospital was taken by ambulance to Prince of Wales, which is now called Sydney Children’s Hospital. And I have had a stroke.

    Kate 6:35

    SoI had lots of awful, very, very painful tests where they injected hot dye into the blood supply to see what happens to my brain. And yeah, so I’d had a stroke and hemorrhagic stroke to the right side of my brain affecting the full left side of that body, which included my face, everything completely paralyzed. So yeah, pretty terrifying, and heartbreaking thing that happens to a child.

    Bill 7:15

    How old are you now?

    Bill 7:17

    I’ve just turned 44 embarrassingly so.

    Bill 7:19

    I’m older than you. So don’t worry about it too much. But you talk about it so vividly like if it’s still fresh.

    Kate 7:35

    Absolutely. I think about it every day. I think about it every day, I remind my children how lucky you know, my daughter was complaining about a wobbly tooth. And I was telling her how lucky she is to have healthy teeth.

    Kate 7:48

    And I think about it all the time, I think about all the memories I have of my childhood of you know, being a ballet dancer or having fun on my bike riding to my friend’s house and all those things I wasn’t able, have never been able to do over again.

    Kate 8:07

    My left side of my body, you know, I lost my balance. So I remind myself, so I have kept those memories alive. Because if they fade away that would be awful to me. They’re very vivid, and I like to keep those memories alive.

    Kate 8:24

    And it was such like giving birth for example, I’ll never forget the moment that I gave birth to each of my three children, I could remember those times vividly. I still remember lying on the table when I was having the CAT scan.

    Kate 8:49

    I remember feeling like I was going to fall off the table because I couldn’t feel one side of my body. And I remember you know, them saying don’t move Kate and I remember feeling angry when they were saying don’t move and I was lying as still as I could, I remember the feelings and of course the pain of it. So yes, certainly I kept those alive.

    Bill 9:22

    Is the memory distant? Or is it still fresh in that are you re-experiencing that? Are you traumatized by that? And therefore you re-experiencing the trauma? Or is it just a situation that you remember? And you have a vivid memory of that situation? So basically, I’m just trying to see if there’s separation now of time between 10 and 34 years have passed? Is it in the distance in the past or is it still in the current time?

    Kate 9:52

    Yeah, it’s in the past now. And I’ve sort of separated the pain. I’ve gotten past the anger and the frustration and the grief of it all. But I mean, certainly that’s taken a very, very long time to get there.

    Bill 10:18

    Yeah. So, I contacted you, because I saw the post that you did with one of your daughters about some of the challenges that you’re experiencing, and some of the problems that you have, using just one of your arms because the other one isn’t able to be used to do up shirts, and to do all that kind of stuff.

    Post-stroke Challenges for Kate Ryan


    Bill 10:45
    Tell me a little bit about the thinking behind that post on Instagram, what’s the purpose of you sharing a post where you’re chatting with your daughter about how you go about buttoning up your shirt or putting on clothing?

    Kate 11:00

    Yeah, so being a childhood survivor of a stroke, is probably different to these days. But back in my day, there really wasn’t any help. And I just had to learn how to do everything, again, very, very, very quickly.

    Kate 11:19

    And I had to learn how to do things with one hand, and I had to pick them up, pick it up, like doing buttons up with one hand or how to make toast with one hand. And I found that as I was getting older, I found out that speaking to other stroke survivors, especially older people, they were just not able to do these activities.

    Kate 11:43

    And I had a wealth of knowledge, in my mind that I thought, wow, all these people could benefit from the things I know, there are so many even little things that I lived in a house that had double door handles, and I worked out, I couldn’t get out of the house for the first couple of months until I learned how to do double door handles.

    Kate 12:06

    Which for anyone is who’s struggling. It’s you hold the bottom one. And you turn that and then you turn the top handle with the upper part of your forearms. I learned how to do that, and just so many things.

    Kate 12:23

    So I just started now that there’s so much social media and opportunity to tell people I thought what a great way to present it in an entertaining format, or you know, in an educational format my daughter has been helping me, make them fun.

    Kate 12:42

    And we did that one on how to do up buttons with one hand. Because once you know how to do it, it’s quite simple. Really, you know, we don’t need to use all little fancy tools or, you know, velcro tops, things like that once you know that a quick little knack you can live just like anybody else.

    Bill 13:09

    That’s important. You’ve got no choice really attend, you need to be a problem solver, don’t you? You just need to find ways to solve all these problems. And it doesn’t seem to me that a 10-year-old really gets caught up in the problem they get caught up in the solution. Would you say that’s accurate? Is that how you would describe your path towards overcoming the challenges that you would face as a young kid after especially after before the stroke, you were able to operate as most people and use both arms?

    Kate 13:44

    Yeah, well, I was an like I said I was an extremely driven person and still am. But never came into my mind that I would you know, have had a stroke or I’ve not been able to do things with two hands. But I just found that occupational therapy, in fact, it wasn’t very helpful to me and my, you know, a child’s brain can adapt very quickly.

    Kate 14:18

    And, you know, that’s where we go to school. And we’re young, because we’re learning we have the ability to learn new skills really quickly. So you know, if I was trying to get on, you know, for a little while I couldn’t get upstairs. So I had to learn how to get upstairs by myself because there was nobody there to show me how to I couldn’t wait until Monday when my occupational therapy class was.

    Kate 14:48

    I had shared it with 20 other school children trying to get up the stairs pushing me out of the way but I had to learn away how to how to do it. So it was just a matter of adapting so that I didn’t get left behind.

    Kate 15:04

    So, whereas an adult could you know, might have certain adjustments, they could stay at home, or they could have time off work. And you know, certainly, I was really angry and depressed and frustrated, and all those things just like anybody else, but at the same time, my brain is forming new patterns quickly and in different ways.

    Bill 15:40

    Yeah. What was it like being at school? And going through the teenage years with the challenges that you faced? Did you feel left out? Did you feel isolated? Was any of that an issue? Or did you just blend in and we’re one of the regular kids?

    Kate 15:57

    Yeah, no I didn’t feel left out or isolated. I was pretty lucky in that way. But I did feel misunderstood. People just didn’t understand and didn’t care. I went to an all-girls school, and some of the girls were really, really hurtful.

    Kate 16:22

    And, I also developed epilepsy as a result of the brain injury. And even though they told me that I was putting a seizure on or, making it up or leaving school early. And no I have lots of tears and lots of hurt feelings.

    Kate 16:38

    I mean, it’s pretty awful the things that they said, but I never really felt alone. The only times that I was feeling alone was in the initial stages when I had my stroke when I was in year five at school, was in those early stages where I found it hard to play with other children.

    Kate 16:38

    So that was when everyone played and did skipping, or whatever I did, and I wasn’t able to do that. And I didn’t feel that I could bond with my own friends. Because I couldn’t do those playing activities.

    Kate 17:19

    And a lot of the people a lot of my old friends did actually didn’t want to be around me and couldn’t relate to me anymore, because I look different, or that sort of thing. But yeah, it was a lot tougher as I was in my high school years.

    Kate Ryan Was Treated Differently


    Bill 17:39
    High school kids can be so cruel. I know what little idiot I was when I was at school, and how cruel I could have been to other people, for all sorts of reasons. And I didn’t think twice about it, like you just misbehave and you just treat people badly. And you wouldn’t even think about the impact that you’re having on them.

    Bill 18:00

    Nobody ever really stopped to say to you, this is the impact that you’re having on me. And even if they did, I don’t think I would have taken it seriously, I don’t think I would have listened. So I wouldn’t have considered myself a terrible person. But in my group, when you know, the other group of, you know, kids was giving us a hard time, we would just give it back just as hard and if not harder, you know, everyone will try to outdo themselves as to how terrible you can be to each other.

    Bill 18:31

    So I can imagine when you’re a teenager, and you’re not thinking about the feelings of the other person, I can imagine how they might mistreat somebody who’s doing it tough.

    Bill 18:43

    And who’s an easy victim, they may have seen you as an easy victim, and therefore, some kids would go after that, because they get an easy win some kind of an easy ego boost or something like that. Did you ever bring that up with your parents and raise it with teachers? Or is it just something that you dealt with?

    Kate 19:03

    I think as part of the times that it was I tried raising up with the school counselor but she definitely wasn’t helpful at all. She used to say to me, you need to see the glass is half full, not half and just like are you serious? You know, look at the situation and I was struggling you know, she’d helped me with my reading or something and I’d say and I was struggling at home as well you know, my family certainly didn’t always understand about what I was going through.

    Kate 19:42

    Which is I here is a common scenario with a lot of families after they have a stroke after the person has a stroke. To receive advice like that, I would often get upset with my friends but really didn’t get any support. from anybody, but I think that might be a part of the times, I’ve noticed that just looking back at my school, they’ve changed a lot.

    Kate 20:08

    And that might be a part of the times that at high school in the early 90s. So no, and from my family, not a lot of support, I think they were struggling with their own difficulties in accepting how much I’ve changed and their own problems within marriage and the marriage thing, being the older brother or someone who’s had a stroke.

    Bill 20:43

    Did you have siblings?

    Kate 20:45

    Yeah, I have an older brother.

    Bill 20:48

    Did he treat you differently? Or did he treat you the same give you a hard time?

    Bill 20:52

    Yeah, very differently.

    Bill 20:53

    Okay. It’s just interesting to hear what happened and how people react and respond because every stroke is different. Every person is different, every family unit is different. And I think that’s what makes it difficult for stroke survivors is they don’t seem to have a regular cookie-cutter thing, I fit into this, and this and this, and this and that.

    Bill 21:19

    And I can relate to all of that. And it’s not a great experience that I’m experiencing. But at least I know what I’m going through is similar to somebody else, or the same as somebody else. And part of what we get in the community that we’re on Instagram, and the conversations that we have online is we get people for, you know, from time to time finding some similarity in what happened to them to what happened to somebody else.

    Bill 21:47

    And they go, Oh, okay. It wasn’t just me. And I’m not sure how, but that makes it better. That seem to make it better that you’re not in it alone. Did you have anyone else that was similar to you, when you were growing up that you could relate to?

    Kate 22:02

    There was absolutely nobody. And there was absolutely nothing? Absolutely no one for me to relate to. And absolutely nothing. There was no social media, because people have to remember, I had a stroke in the 1980s.

    Kate 22:20

    And there was no mobile phones, there was no internet, there was no social media, there was only the Yellow Pages and the white pages. I used to go to adult physiotherapy and adult rehabilitation centers.

    Kate 22:40

    And when I said, I think in the 2000s, late 2000s, they said, Oh, there’s a stroke group, in about and hour away, an adult stroke group. And I’m not going to an adult, I was in my early 20s, and interested in going to nightclubs and things like that. And I said, I am not doing that.

    Kate 23:06

    And forming an identity Finally, and there was absolutely nothing for me. So people were having strokes now really have it lucky, to be quite honest. And with that there was zero, there was such little understanding about strokes back then I had no friends who understood there was absolutely nothing.

    Kate 23:34

    When the internet first started coming about, I was looking online for you know, people that have had strokes as kids and stuff like that. And there was like a little bit in America, but I couldn’t contact them. It was really just so isolating so alone.

    Kate 23:52

    And also I had epilepsy. And I was stuck at home a lot because of having seizures and also the side effects of the medication. It was extremely isolating and heartbreaking and confusing. And that was probably the worst part of everything is the isolation. So it’s far far worse than what people experience today.

    Today’s Advantages

    Bill 24:20

    I can’t imagine even in 2012 when I had the first bleed in my head and then in the subsequent years, there was nothing because it seems like it wasn’t that long ago, but it might as well have been 20 million years ago because in 2012. Instagram wasn’t booming. There wasn’t a lot of people online podcasts were up and running. But there wasn’t a lot of conversation on podcast around these types of topics.

    Bill 24:48

    And if they were they weren’t specifically around stroke. So when I did my podcast, there was nobody else talking about this online at all and getting people on To the podcast was really difficult, it was so hard to find people to talk to. And then I started to get really serious about it maybe about three years ago.

    Bill 25:09

    And I started to notice a big turn a big wave of people actually reaching out to be on my podcast, which wasn’t ever happening before, there wasn’t really something like that. Now, I know that other people have had podcasts on different topics for many more years before me, but there just wasn’t that much about stroke.

    Bill 25:29

    And at the moment, there may be a three or four other podcasts on stroke. And that’s about it. And yeah, there’s people that talk about neurological challenges. And there’s people that talk about overcoming, you know, brain injuries, and all that type of thing. But there’s just not specific stuff around these topics.

    Bill 25:50

    Now, maybe it’s because stroke is one of those things that messes with people’s brains. And it’s harder for people to put stuff like that together, I don’t know. And fatigue obviously causes a lot of issues. And for me, it was really difficult to overcome all the challenges of fatigue, and all that kind of stuff.

    Bill 26:08

    So I think stroke survivors kind of have to work a lot harder to get to the point of, quote, unquote, being in a normal world. And I and I used to find myself, getting myself fatigued, just trying to get through a regular day.

    Bill 26:31

    Because to get through that regular day, I had to really overcome a lot of challenges, a lot of stuff that was going on in my head and in my body. So that lack of energy, the fact that we get so diverted away from our tasks, and the fact that we get so diverted away from our energy gets drawn to different places. It doesn’t surprise me that there’s not more going on.

    Bill 27:02

    But what I love about it is there’s enough going on, so that people who are, man, so that, unfortunately, if 10 year olds have a stroke these days, at least their parents can come online, and they can find a group of people and go, Hey, this just happened to my daughter, which I get all the time.

    Bill 27:23

    And what can I do? Just one of my posts that I put up recently, somebody asked about their four year old daughter doesn’t allow mum and dad to touch one of her sides, I think it’s her right hand or something like that. And it’s because it hurts. And that’s exactly what happens to me, my wife still forgets, and she goes to touch my left hand, and I’ll pull it away, because it hurts when she does it.

    Bill 27:49

    When I touch my own hand, it doesn’t hurt. And when I use my hand to pick up a tea or a coffee or anything like that, it’s all good. But you can’t touch my hand. It’s really annoying, right? The skin is really impacted. What’s great is that mum has probably had that in her head for ages, and or going online and finding a community.

    Bill 28:17

    She asked the question and got an answer immediately. And that was amazing that I could do that for her and totally relate to it immediately. So yeah, we definitely have got it a lot better than we had. And that’s a blessing in the whole situation, isn’t it that you think it’s a great little blessing?

    Bill 28:36

    And I do thank technology for my ability to have this format, because I honestly don’t know what kind of person I would be if I didn’t have this format where I could speak to stroke survivors from around the world. And I’ve spoken to more than 145 at this stage. I don’t know what I would have done if I couldn’t have done it. And if I wouldn’t have reached out to you and have you on my podcast today. I don’t know what what I would have done.

    Kate 29:04

    Yeah. Yeah, I didn’t have any of that. Yeah, that would have been a blessing is you know, just you’ve known one other person that had had a stroke as a kid would have been. One thing that I used to do. When I was young was I used to look everywhere. I just used to look everywhere for someone that had had a stroke, look at someone under like 15 and once I found one, he was like 15 or something.

    Kate 29:45

    And that was just something and I spoke to him and that’s been when you have your stroking but and I was like 18 by then but it took me eight years to just I used to just so I could and I went up and spoke she was on train Yeah, it was really, really, really hard for me.

    Kate 30:07

    Being so isolated, and having no support and no idea of, anything like I can’t even imagine, what having a stroke would have been like if I had had some, some kind of support.

    Kate 30:27

    Because there was no counseling, there’s no social work, there was nothing. As a child, they didn’t even come. If they did come to me in the hospital, I certainly don’t remember any impact that it made within my hospital stay. Yeah, there was no counseling, nothing.

    Bill 30:47

    It sounds like a million years ago, it sounds like you’re talking about, you know, the 1500s It’s so ridiculous, that it’s only been 34 years. That’s not a bloody long time that we were lacking all that support. All I can say is I’m grateful for the support that people get nowadays.

    Bill 31:08

    And it’s improving, and it’s getting better. And even still, it’s not enough. And people tell me often that they don’t have enough support. And I get it because you know how much support people need is different compared, you know, for every person because every person stroke is unique, and every person’s needs are unique. That being said, Are you then relieved? Are you online and going, Oh, my God, I can relate to that person? Oh, my gosh, this is unique. Did that happened to you or not?

    Kate 31:39

    No, it doesn’t. Because I don’t spend a lot of time online. Because I was forced to work on my own recovery. Because I found that I just went into, I’ve talked to in some of my speaking engagements, I’ve talked about this, I just went into the depths of despair, I went down into depression.

    Kate 32:16

    Like I said, After that I was so angry, it was constantly Why me? Why me? I was so angry at the world, I was looking for somebody to blame something, anything to blame. so frustrated, not being able to do anything, you know, my sports, my ballet, I was playing musical instruments, all that sort of thing.

    Kate 32:41

    And I just wanted my old life back. So I was kind of forced to do everything myself. And I was all by myself doing it. And I found that I progressed through a kind of recovery and my grief. And, when I got into it, so that was all sort of through my teen years. And, and with no support whatsoever, I just fallen away at this.

    Kate 33:15

    And, then and then in my early 20s I am still being really depressed. And that sort of thing. I started sort of playing with the idea of I’m gonna have to start moving on with my life. But how am I going to do that? And I don’t want to move on and what am I going to do now?

    Kate 33:40

    And I started playing with my identity and I want my old life back? And how am I going to do that? How am I going to get my old life back and then in my 30s I had my three children, pretty close together. And I had twins.

    Bill 34:05

    Lovely and cruel at the same time.

    The Power Of Acceptance


    Kate 34:07
    Yeah a package deal. And I had my daughter as well. So and shortly after that a couple of years later I was just sitting in my car and after speaking to someone on the phone, and I was just like, I don’t want to live like this anymore. I don’t want to live with you know, being isolated and depressed and just grieving this old life. I don’t want to live like this anymore.

    Kate 34:37

    And it was like butterflies just lifted away and I just saw the world in a different way. And then I was like, far out. I’ve just accepted everything. And I’ve reached that you know the grief stage that goes in stages and I’ve reached acceptance. And I was like, wow, that’s bloody unbelievable. And I did it all myself.

    Intro 35:07

    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 35:32

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

    Intro 35:51

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

    Kate 36:10

    When I go back online, and people talk about, you know where they’re at. I’m like, I’m not there anymore. I’m not feeling angry, or I’m not. I don’t want to talk about certain aspects of my stroke, because I don’t feel that way anymore. I’ve passed it. And the good thing is, I got there myself.

    Kate 36:34

    And yeah, I don’t need to go there anymore. I know, some people are doing like, informal chats and groups on other forums and in groups and things. But I just don’t need it. Because I’ve sort of healed within myself. And I’ll tell you what this acceptance stage doesn’t last, you know, like three weeks or something.

    Kate 36:59

    It continues to grow. And I’m like, oh, my goodness, I’m healing in so many other areas. And Wow, you know, I’ve had a pretty awful relationship with my mother ever since I had the stroke. As soon as I had a stroke, our relationship just took a nosedive and just became really bad.

    Kate 37:22

    And she was just angry at me. And just in the last, about months? It’s gotten really good. And I’m like, wow, where did that come from? And there’s a few other things. And I’m like, that’s because of the acceptance.

    Kate 37:40

    So the acceptance stage is like, such a growth stage. So I’m actually writing a book on the grief process after having a stroke, or any kind of injury, because it’s, it’s been such a powerful experience for me. And it’s such an area of growth, but it’s a process and it’s bloody worth it.

    Bill 38:11

    Before we talk about the book that you’re going to write, we’re going to be talking about the book you’ve already written so but just before we talk about, “Beyond Stroke Living Independently With One Arm” before we talk about that, I want to go back a little bit to the overcoming grief part. And becoming fully accepting of your situation. How long ago did that happen? I missed on the timing. When did that happen?

    Kate 38:46

    Five or six years ago, 6 years ago, yeah.

    Bill 38:49

    Okay. And it took you 25 years to get there. But you’ve got there, right. So this is the brilliant part of it, you did it all on your own. Now, why I wanted to mention that was because imagine if you had some support, and you were able to go through a different process towards fully accepting things, you might have got this sooner.

    Bill 39:13

    So what I’m saying to the people listening and watching is that you can get to acceptance sooner with support and with counseling and with some kind of a therapy that works for you. So I’m not sure what that is. I’m not sure how you’ll find that. But just know that with support, that timeline can shrink.

    Bill 39:35

    And for me, I got to acceptance pretty quick. I think, well, the one thing that I really, truly needed to accept was that I might die. And once I had done that, I had that shift as well. And I was then able to see the world differently, and then other things became possible.

    Bill 39:53

    Podcast, speaking about it, all the things that I’m doing now all began possible because of the acceptance part of it. So I didn’t stay in my poor me space very, very quickly. But I was also at counseling on day seven, pretty much I think, or day 10 after the first bleed in my head.

    Bill 40:15

    So I was really proactive. And before that I was at counseling for a good number of years, I reckon I started counseling about eight years before my stroke. And that was just something that I felt like I needed to do. Because all the stuff that stroke survivors talk about not being understood and not being able to explain what they’re going through and all that I felt like that pre-stroke I was unable to have people understand me or I just felt alone.

    Bill 40:47

    Like weirdly alone in the world where I had everybody around me and everything. And it was everything was amazing. So I went and got myself into some counseling so that I could come to terms with all the challenges and all the stuff that I was feeling.

    Bill 41:02

    So you took 20, odd years, 25, 26 years to get to that point, we can shrink that time down with a bit of focus, and a little bit of support. Kate, the beauty of the fact that you did it on your own and say later on, you write a book about that stage for you. That’s what it’s going to do that book, when people read it, it’s going to shrink the time that it takes for others to get to your stage sooner.

    Bill 41:32

    And that’s gonna be amazing to read. And I’d love to see that book, you know, available, that’d be great. But let’s talk about the book that you have already written Beyond Stroke Living Independently With One Arm. If you got a copy in there, can you just hold it up to the camera?

    Bill 41:58

    That’s it a bit higher. Perfect that’s it. I’ll make sure there’s links and everything and an image of it. On the show notes. It’s awesome. How long ago? Did you finish that?

    Kate 42:11

    I finished that. 2016.

    Bill 42:24

    Awesome. Tell me a little bit about what people can expect to find in the book. What’s it about?

    Living With One Arm


    Kate 42:30
    So the book, in the beginning part of the book, I talked a bit about the reality of stroke, because sometimes people don’t tell you exactly what’s going to happen. So the doctors might say, oh, physios might say, you know, this is gonna happen when you leave.

    Kate 42:48

    But it’s not exactly real, because they haven’t been there. So I talked a little bit about living with stroke. And then sort of the reality of strokes or what the what how the world is going to react to you having a stroke, and how important it is to get your independence.

    Kate 43:06

    Because the carers aren’t always going to be there and your families might be frustrated with you. Or, you know, you’re not always going to get the help that you need. Then I go into a series of different topics, which I’ll just go back to the contents of doing things, one, tasks one handed.

    Kate 43:31

    For example, we’ve got things in the kitchen, personal care, opening containers, food containers, specifically, by jars. You know how hot jars are to open. Things like that. I’ve got, like twist top leads and things like that. I’ll show you how to do that with these one hand and seals on bottles.

    Kate 44:05

    Okay, I’ve got around the house. Things like right, keeping a book still or writing on a piece of paper. So the paper doesn’t move to simple stuff like that. And I’ll give you really simple techniques. I’ve got children and babies in there. All different things like swaddling a baby and doing buckles and my boys you still like square so I’ve got some really great ideas and lifting large.

    Bill 44:34

    What about changing nappies?

    Kate 44:36

    That’s all in there that I’m lifting large objects. So we got that in there and just some recreation bits and pieces. So I’ll show you a bit I’ve got here. So I’ve just got some ideas of zippers and putting on a jacket is put On a jacket, me and they’re just really simple pictures. I haven’t gone to town with fancy stuff. And then what I do on the opposite page is I just put a really simple breakdown of description, which goes next to the pictures.

    Bill 45:17

    Yep. Yeah.

    Kate 45:19

    And there’s tons of them. I got, I got a whole book. Here’s the nappy swell. So I’ve got a describe about the pullups. Yeah, and I talked to people about kids in pull ups, as soon as I can eat, we’ll just you’ll change your life. Yeah. And unless the description which goes next to it.

    Bill 45:40

    Yeah, fantastic. It’s such a, it’s such a great idea. It’s such a handy thing. And I can see that it’s really easy to read the text is quite a good size. There’s not a lot of texts not overdone. It’s just really, step by step seems like procedural manual.

    Kate 45:58

    I thought because I know, I had a lot of problems with with reading, after strokes, the following words and texts. So that’s why I’ve kept that quite simple for anyone with with reading, and challenges understanding words after they’ve had a brain injury. Yeah, I’ve had the same problem.

    Bill 46:17

    Now the same problem with reading. So books that are very spaced out and the writing is quite big, it tends to make my brain not get so tired. Yeah, I really appreciate that

    Kate 46:30

    part of it. Oh, the other thing, so it’s got nice big words, nice big text on the front. Not too many colors. Last year must be words and point form. And the other thing is, it’s spiral bound, spiral bound. So it’ll sit nice. Oh,

    Bill 46:49

    I love we thought of everything you showed me was awesome. Since I spine to worry about it’s going to fold back and it’s going to be really comfortable to hold in one hand and read and

    Kate 47:04

    Yeah, well, you don’t even need to hold it. With one hand, you can just put it on the kitchen table. Why can’t you run about? Or whatever.

    Bill 47:11

    You can stand it up?

    Kate 47:13

    there anything, whatever you want. You don’t have to hold it. And then you stop because you’ve only got? No. We thought of every trick.

    Bill 47:22

    Fantastic. It’s such a great idea. And it’s available online. Where do people buy it if they want to grab it?

    Kate 47:29

    Yeah, so it’s available in two forms. So you can buy it off ryanpublishing.com.au. And I’ll give you the link to add for that. And that’s the hardcopy version. And for E-Book, you can buy it off all the normal platforms like booktopia, and Amazon. So far, I’m not sure what the other ones.

    Bill 47:55

    What I love about ebooks is again, you can get it, you can print it off, and you can take it down to your local binding store, whatever they’re called in Australia, it’s office works. I’m not sure what they called overseas.

    Bill 48:08

    And they can just pull one of those ring binders on it for you as well. And you can use it in the same format.

    Kate 48:15

    I don’t know. I don’t know about any of that technology stuff.

    Bill 48:20

    All right. Well, if it does work, well there you go, it works. If it doesn’t, well, it doesn’t I don’t know, because I’ve done that before for some books, where I’ve bought a PDF version, and then bound it in that way. And it really makes a big difference to me as well when I’m using it.

    Bill 48:37

    Not that I have trouble using both my arms, but it just makes a big difference when I’m using a book. And I don’t have to worry about destroying, you know, the binding. I don’t know. It’s weird. I hate getting a brand new, perfectly crisp book and then bending it back.

    Kate 48:54

    I’ve got some tips for that in my book as well.

    Bill 48:57

    Awesome. All right brilliant! How long did it take you to put together?

    Kate 49:05

    It took me about six months to write it. Probably because I was going slow pretty slow and just enjoying my freedom because the kids were at preschool and stuff like that. I took my time and then probably took about two months to take the photos but again, I was just taking my time with that as well.

    Bill 49:30

    So you got through it. And it was Ryan Publishing was the publisher. How good was it or easy was it to find the publisher for a book like that?

    Kate 49:43

    It was pretty straightforward because the publisher is actually my father.

    Bill 49:50

    So basically, was your publishing this book, mate?

    Kate 49:54

    No, I actually looked around for a lot of different publishers I forgot I kind of forgot that.

    Bill 50:02

    That your dad’s a publisher?

    Kate 50:04

    Yeah.

    Kate 50:06

    I just, I thought, Oh, you know, I want someone young and savvy and everything. And then my dad was visiting me and the kids and he said, I’ll do it for you make it look great. It’s been the best thing ever. And he’s in Melbourne.

    Bill 50:26

    That is hilarious. I’m in Melbourne, I’m gonna go and look him up. And when I go into his website, he’s got some really cool books on there, and some of them are very Australian, you’ve got Beauregard of Ballarat. My God, I can’t believe that. I’ve never heard of this before.

    Bill 50:48

    But it’s really amazing to see. So he was able to take you through that process where you got your book up and running within around six months and get it published. And now it’s also available online. And that’s really a helpful tool for people that are going through life, either because of a stroke or some other reason with not being able to use both arms.

    Kate 50:53

    It could be anything this book are directed at people that have had a stroke, because you know, that’s my experience. But I mean, it can be for anybody.

    Bill 51:27

    Amputees.

    Kate 51:28

    Amputees we’ve sold a lot to the Amputee Association in Queensland. It can be someone with arthritis, MS, carpal tunnel syndrome, people post-surgery, sports injuries. There’s another condition I forgot what it’s called, but it affects the fingers.

    Kate 51:45

    You know, I’ve had a lady who had an injury to her thumb, who bought my book, and it was only very minor, damage to her nerves. And I mean, the list is endless, you know, broken arms.

    Bill 52:01

    Yeah. Okay, that was really helpful, actually.

    Kate 52:04

    Yeah. So um, and that’s the purpose of the videos as well. So there’s, you know, someone who’s had a brain injury, which only affects their arm or their hand or something like that. So yeah, that’s the purpose of the video so it can reach a broader group of people, rather than just people that have had a stroke?

    Sharing Your Story And Helping Others

    Bill 52:29

    Isn’t that amazing? When you think of a solution for a problem, you always think about how it will solve your problem, and you’re in your situation. But then everyone else says, Oh, my God, that can help me and I can support show that to somebody else who I know who is not a stroke survivor.

    Bill 52:44

    And that’s the beauty of it is you do this, really, it sort of stems from your need to solve your own problems. And then it’s like, hey, by the way, these problems are solvable. How about, I write this book and put it in a format that everyone can get to it. And maybe you can apply it in your life, it’s brilliant.

    Kate 53:04

    almost every single person that has heard about my business says, I know such and such a person, or my mother has had a stroke, or I have a wake-up, almost every single person has said, they know someone who could who has an injury to their arm, it’s an it’s absolutely amazing. Or I know three people that could use this book.

    Bill 53:29

    How does it make you feel?

    Kate 53:31

    Oh, it makes me it makes me feel that I’m on the right track, because when I was writing the book, I had a friend in my life. And I said, I don’t know if anybody’s going to read this. And, and the only way of keeping me going was having friends in my life, just to bounce ideas off and say, just give me the confidence to keep going.

    Kate 54:04

    So okay. Just do one bit, as much as I can, with just the idea that maybe one person will buy it. And then I have 500 people buy it. And you know, two more people buy it, and 34 people buy it. And it’s just great that it is changing people’s lives. I wrote the book because I had a lady who was working with us and she was saying how much her husband would benefit from the book.

    Kate 54:34

    And she said, it really needs to be this kind of resource really needs to be out there for people. And I was like, if this one lady is saying how much it’s needed, he’d had a stroke. Or then it needs to be needed for other people. And my mother is actually a physio therapist, and she was originally the person who said to me, about 15 years ago, I cannot undo this jam jar can you do it? Okay, and I just went bang, bang with a knife.

    Kate 55:17

    That’s how you do it you open it, turn it upside down and use a knife to flip the lid open. And she said, if you put that in a book, it would sell. And I just kept that in my brain for 15 years. And she was right and this lady that was working with us was rad as well.

    Bill 55:44

    Absolutely. Doubt’s the bigger killer of ideas than anything really. I mean, that we have to overcome. I almost didn’t do the podcast, I started it. And then I stopped it and then didn’t commit to it. And that because I was doubtful that people listened to it. I thought I was gonna get judged and given a hard time and all this kind of stuff.

    Bill 56:06

    And I was like, what an idiot. Looking back now, what it was, was just me being afraid to put myself out there, I’d never really done it before. I was afraid to have to respond to people if they came, if they decided to be negative, I was afraid that that would happen. And then what would I do? Like how would I overcome that when all I’m trying to do is something good.

    Bill 56:32

    So I almost didn’t do it. But I also couldn’t bear the thought of not doing it because I used to get messages from people going, that was a really helpful episode, or I still do every day. And that just makes it impossible for me not to do this podcast. So forget about the doubt, overcome your fears.

    Bill 56:51

    And just push through anybody listening? Who’s had an idea to do something, just do it anyway. And then put it out there. And don’t worry too much about what you think people will say or do because it’s probably wrong.

    Kate 57:04

    I think that was my biggest barrier as well. I was thinking people say, Oh, the pictures are bad. Are this is stupid, this book? And I haven’t had one single negative comment. They’ve all been positive. It really amazed me actually. It’s been a blessing.

    Bill 57:24

    Yeah. Well done good on you. And I just had a thought. Do you reckon your mum has also got to that point of acceptance? And that’s why you guys have had a good turn in the relationship?

    Bill 57:38

    Possibly? I’m not sure maybe.

    Bill 57:45

    Yeah. Just put it out there. You didn’t have to have an answer for that. It’s just something that popped up into my head. And I’m thinking about parents, how little resources you had as a child who was going through that, imagine the lack of any support or help that they also, didn’t have.

    Bill 58:03

    And they did the best they could with the resources that they had available to them. And that was still wayfully short of actual any real true support. And then your mom was angry at you thinking, maybe, you know, I’m not sure that she was angry at her daughter for being unwell.

    Bill 58:27

    But she was probably angry at the situation just like a lot of people experience anger in their own challenge. And she wouldn’t have had any idea, any clue how to actually deal with that whole situation. And imagine that being a parent because I’m a parent. And imagine that, I mean, you just don’t want to even go down that path.

    Kate 58:49

    Yeah, yeah. The whole family. Even friends, exactly. It’s kind of a what’s the word? It’s sort of self, is that a word? Self combusts? And, and like an oven.

    Bill 59:15

    Yeah. It’s a lot of pressure. A lot of stuff going on, and it just bursts and that’s it that people aren’t coping and then they can’t.

    Kate 59:24

    Yeah. People turn to alcohol and all the other things like hurtful feelings, remarks, that sort of thing. Abuse, not that we really had that, but because they can’t cope with the reality of what’s happening.

    Bill 59:42

    Yeah, it’s emotional. All of it is emotional. And it plays out in these other weird strange ways. And if you’re drinking, and if you’re taking drugs, or if you’re playing out these things in a hurtful way, maybe you’re just trying to mask or process, we’ll deal with emotions that have been dealt with really.

    Bill 1:00:04

    And that’s why I kept sort of going back to the counseling part and why it’s important for people to look for solutions to things like anger, and try and decrease the amount of time that they stay angry. Because just similarly to what you said, there’s a lot of time that’s kind of wasted in that space.

    Look For Solutions

    Bill 1:00:25

    Like, if you’re sitting there being angry, and cranky, and all that kind of stuff, you’re not really able to see what else is possible, just like it lifted for you, when you had acceptance, you saw all this stuff. So I think what I’m just trying to get at is encourage people to look for solutions, rather than staying the problem, the solution is really going to set them free isn’t it?

    Kate 1:00:51

    Well, I think the solution is just to keep going. And, I also found that rather than trying to force their recovery, I found that it, I didn’t have to do much. It, you know, I didn’t have to try and get better. I didn’t have to try and heal myself. I didn’t have to try and you know, a lot of people that think I noticed on some social media groups.

    Kate 1:01:30

    What are they saying? They’re saying things like, Oh, don’t stop, I can pick myself up. But I but my opinion is actually Yes, stop, have a break, if you’re feeling down, because they’re sort of saying, if I’m feeling sad, I’ve got to pick myself up straight away. And, and I’ve always got to be try try try to like, work on my recovery. But I’m like, No, give yourself a break. But that’s my personal opinion. Because that’s what I did.

    Bill 1:02:09

    That’s also working on your recovery, giving yourself a break, and doing nothing.

    Kate 1:02:13

    Right! That’s what I did. It didn’t mean that I stopped doing physio therapy, or, because I’ve done physio therapy the whole way since having my stroke up until basically, when I had my kids, when I had my twins, since having the twin boys, we haven’t really had a lot of time.

    Kate 1:02:37

    But like a lot of people are saying, No time for a break, gotta gotta keep moving, keep doing the recovery. But I’m like, just give yourself a break. And that’s that’s when the healing occurs. And I found that in getting through that depression, anger stage. Sort of, it happened by me really not doing much.

    Bill 1:03:02

    But that’s the counterintuitive part of it, it’s looking for the solution. That doesn’t mean the solution is to do more or be more fixed more, it’s sometimes the solution is do less, be less active, be less out in the public, sometimes that’s the solution.

    Bill 1:03:21

    So it’s exactly what you’re saying. it’s counterintuitive. It’s not always what you think it is, it might be something that you didn’t expect. So give everything a try. And every feeling is valid, right? Every feeling is necessary to experience and go through the upset the anger, the crankiness the depression.

    Bill 1:03:42

    And some of them are not pleasant, but they are valid they need to be experienced and expressed and then kind of given the attention that they are suggesting that they need from you. So once you allow yourself to have those feelings and express them and feel them for all the good or all they’re bad. That’s what the purpose of them.

    Kate 1:04:07

    If you feel like eating a packet of Tim Tams and crying and getting into bed just bloody well do it don’t go out and and exercise for like go around the block and or catching up with friends for dinner. Like if you have to take care of yourself because you have grief coming up do it go to bed have a packet Tim Tams and watch some Netflix or cry cuz you feel like crying.

    Bill 1:04:41

    But don’t do the Tim Tams a lot? Not a lot because you’ll put on a heap of weight.

    Kate 1:04:46

    Maybe not always.

    Bill 1:04:47

    Or once in a blue moon yeah eat a whole pack of Tim Tams if you have to.

    Kate 1:04:53

    But you know what I mean? Like it’s about caring for yourself as well.

    Kate 1:04:58

    Because there’s so much innocence Sorry. Now where are we, where we got to look good. We’ve got to have the great photos for Facebook and if you look at my photos, I rarely post on Facebook, I might post a couple of my kids doing something great. I’m most of the time just caring for myself because I’m I know what that amazing stuff that has has achieved for me.

    Kate 1:05:27

    So yeah, I really encourage anybody that’s listening to I don’t know if counselors are saying that to do this and that, but it’s not about like the process after having a stroke is not about getting up and doing more exercise or trying to heal. It’s just about taking care of yourself one day at a time.

    Bill 1:05:49

    Yeah, I love that. Kate, on that note, I think we might end it here. Thank you so much for being my guest on the podcast. Thank you so much for the book that you’ve written. I’m going to have the show notes for everybody with the links so that people can find that and get a copy if they need to.

    Bill 1:06:05

    I’m looking forward to the next book. Make sure you let me know when it’s done so that I can get you one or we can talk about that. Good luck on your recovery on your ongoing recovery and well done on getting through that barrier and finding acceptance.

    Kate 1:06:22

    Yeah, thank you so much, Bill. And yeah, hope we speak again soon.

    Bill 1:06:27

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

    Bill 1:06:39

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

    Bill 1:06:50

    From reclaiming your independence to getting back to work to rebuilding your confidence and more. The symptoms don’t follow a rulebook. As soon as you leave the hospital you no longer have medical professionals on tap.

    Bill 1:07:02

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

    Bill 1:07:19

    I’ve created an inclusive, supportive and accessible membership called recovery after a stroke. This all in one support and resource program is designed to help you take your health into your own hands.

    Bill 1:07:32

    This is your guidebook through every step in your journey from reducing fatigue to strengthening your brain health, to overcoming anxiety and more. To find out more and to join the community just head to recoveryafterstroke.com. See you next time.

    Intro 1:07:47

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

    Intro 1:08:04

    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 1:08:26

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

    Intro 1:08:41

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:09:06

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

    The post Living With One Arm – Kate Ryan appeared first on Recovery After Stroke.

    1 hr 11 min
  • The Signs Of Stroke – Stacy Quinn

    Stacy Quinn was Fit, healthy, and full of energy at age 41, and never associated the signs of stroke with someone of her age so she avoided getting the help she needed.

    Socials:

    www.facebook.com/stacyq1
    www.instagram.com/mystrokeofhope/
    www.mystrokeofhope.com

    Highlights:

    01:11 Introduction

    04:11 Ignoring The Signs Of Stroke
    08:08 Carotid Artery Dissection
    14:40 Rushing Recovery After A Stroke
    19:47 Possible Carotid Artery Dissection Causes
    23:48 Why Me?
    29:40 Road To Recovery And Finding Purpose
    35:17 Stacy Quinn Taking Time To Heal
    42:21 My Stroke Of Hope
    50:58 Bill’s Upcoming Book
    1:04:30 This Is Who I Am

    Transcription:

    Stacy Quinn 0:00

    I remember there were days afterward when I’d have to lay under my desk and one of my colleagues that worked for me said, can you please cover? I just need to close my eyes my head hurts.

    Stacy Quinn 0:09

    And I would actually lay under my desk for 15 minutes and close my eyes and then go back to work. I really should have taken time off and that’s something that I would advise anyone that goes through something like that, but I was in this mode where I needed my normal state and I needed to be next to those doctors just in case.

    Bill 0:25

    Did you use to lay under your desk to sleep? That desperate you were that desperate to calm your brain to keep it chill and quiet for a little bit. And then you actually even got them to cover your desk with what?

    Stacy Quinn 0:43

    Oh, someone would cover for me while I was under my desk if something came up. I didn’t have a tent or anything. But yeah, someone would, cover for me.

    Intro 0:58

    This is the Recovery after Stroke podcast, with Bill Gasiamis. Helping you navigate recovery after stroke.

    Introduction


    Bill 1:11
    Hello and welcome to recovery after stroke. A podcast full of answers, advice, and practical tools for stroke survivors to help them take back their life after a stroke and build a stronger future. I’m your host, three-time stroke survivor, Bill Gasiamis.

    Bill 1:25

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

    Bill 1:37

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

    Bill 1:54

    This is Episode 144 and my guest today is Stacy Quinn who experienced a stroke at age 41 due to a carotid artery dissection. Recently, Stacy became aware that she is more grateful for life and has implemented some changes that have enhanced her life and supported her recovery.

    Bill 2:12

    Now if you have enjoyed the recovery after stroke podcast interviews, please share your favorite episode on social media and give the show a five-star review on iTunes. And if you’re watching on YouTube, please give this episode of thumbs up and subscribe to be notified of new interviews.

    Bill 2:27

    Your support with this will make it easier for other stroke survivors to find the show, and perhaps feel better about the situation that they find themselves in. Thanks so much for listening. And now it’s on with the show.

    Stacy 2:38

    I have to say I’m so excited to meet you. I have like followed you and your work and you do amazing work. And I wish I would have known you after I had my stroke because I struggled to find someone who could help me. So I found you a little late in the process. But, yeah, I wish I would have known.

    Bill 2:55

    Look lots of people said that when you had your stroke in 2015, I wouldn’t have been in any state to help anybody. I could barely help myself, I was probably just coming on to 12 months after surgery, brain surgery so I was a bit of a mess.

    Bill 3:12

    I did have the podcast, but it didn’t really hit the mark, because it was being done infrequently. I didn’t know who my audience was, and the stories I was sharing, you know, I wasn’t really good at understanding why I was sharing their stories. And now that I know. It has made a big difference to a whole bunch of people.

    Bill 3:33

    And that’s the strange part. I didn’t start it for you guys have started it for me. And the cool thing about it is, is that lots of other people now are now saying that it really makes a difference. It gets downloaded three and a half 1000 times a month I mean, it’s been insane.

    Bill 3:52

    And I remember the first few episodes, I was getting, you know, maybe three or four people listening and they weren’t really listening. They were just checking it out to say that they did. So they can make me feel better. But anyhow, tell me a little bit about you and what happened to you.

    Stacy Quinn – Ignoring The Signs Of Stroke


    Stacy Quinn 4:11
    Sure. So what happened to me was, I was in one of the best shape of my life. I was working out with a trainer I had recently lost a little weight. I wouldn’t have thought Bill that anything more could happen to me than maybe getting the cold or the flu.

    Stacy Quinn 4:28

    But that changed in the blink of an eye. I was working in New York City at the time and I was on the train to my job. I live in New Jersey. So I take a train and I was like I just got this headache. It was the worst I would describe it as the worst headache of my life and I thought wow, you know what, it’s around the holidays, I was going to holiday parties, I was shopping I had a lot going on and it was the end of the year at work.

    Stacy Quinn 4:51

    So things were really hectic. So I thought okay, it’s just stress right? So I went into the coffee shop, got a shot of espresso and I said I’m going to go about my day, this is going to go away.

    Stacy Quinn 5:02

    So I get to my desk, and do some work. And then it was time to meet with my new boss and I like my head is throbbing. But I said, I got to get through this. She’s my new boss, I’ve got to make a good impression.

    Stacy Quinn 5:12

    So we’re having a meeting. And suddenly, for the first time since I was a little girl, I couldn’t string together a sentence. It was garble. And then I stopped for a second because you know, it kind of scared me.

    Stacy Quinn 5:24

    And then as soon as it happened, Bill, it went away. So blah, blah, blah. She’s like, are you okay? I’m like, I’m great. go about it. The same thing happens again. But as soon as it happens, is it as fast as it goes away?

    Stacy Quinn 5:37

    So she asked me if I was okay. And I said, Yes. And then I went back to my desk. And I consulted Dr. Google, because that’s what we do, right? I’m like a severe headache. I get migraine, you know, and then I like, emailed my mom and I said, listen, I had this weird experience, and she goes, go to the hospital, you’re having a stroke.

    Stacy Quinn 5:55

    I said, no, I’m not having a stroke. I’m a young woman, I’m healthy. So she’s like, begging me. And I said, no, but I said, I’m going to go to Urgent Care after I’ll go to Urgent Care after work. So I honored that commitment. And the doctor looked at me, he’s like, you’re fine.

    Stacy Quinn 6:11

    You just have a migraine and you’re stressed out, give me a prescription sends me home, I take the medicine a couple of days later, and it’s not getting any better Bill, it’s like headaches getting worse, I went back to urgent care, because it was around New Year’s Eve, and went to the same Center, the woman looks at my record, she’s like you have an ear infection now.

    Stacy Quinn 6:31

    Gee, okay, I did eardrops. Take those. And I’m like rubbing on my neck, my neck is starting to hurt now taking the ear drops. And then now we’re like, 10 days since the slurred speech, the onset of the sudden, severe headache. And I said, I can’t take this, I’d almost rather die than have this headache.

    Stacy Quinn 6:51

    So I googled online neurologists near the office, and I begged the receptionist to get me in that day. And she did. And I went into him. And he looks at me, and he’s like, Ah, you know, I think you’re okay, but we’ll just send you for an MRI of your neck and your brain just to be sure.

    Stacy Quinn 7:09

    And I said, Doctor, I’m really busy. I don’t really have time to make the appointment and go, I have personal training tonight. So can I go the next day, or later in the week, and he’s like, you can delay the day, but that’s all.

    Stacy Quinn 7:22

    So I’m at the gym, lifting, the head’s pounding. And I go and get the MRI of my brain the next day. And then within hours, my cell phone rings, and it’s the doctor, you know, and I thought Bill, this isn’t good. I have an appointment with him later in the week, they found something and I originally thought they probably had a brain aneurysm or something.

    Stacy Quinn 7:45

    And he’s like, where are you? I was like, why? He’s like, you need to get to the hospital as soon as possible. And I said I don’t understand. He’s like, you’re going to have a catastrophic stroke. Get to the hospital.

    Stacy Quinn 7:57

    Yeah, I start packing a bag. I don’t know what I’m thinking. I’m thinking I might be there. While I call my dad like, Listen, I got to go to the hospital. And he said there was a team of people waiting for me.

    Carotid Artery Dissection

    Stacy Quinn 8:08

    And there were they shuffled me back as soon as possible. And that’s where I learned I had a carotid artery dissection. My blockage at the time was at 90%. And I was probably hours away from what would have been a stroke that left me extremely disabled or would have taken my life.

    Bill 8:28

    You are one crazy girl. Oh, my God, you sound like me. I did exactly what you did kind of like I argued with the chiropractor, he told me to go to the hospital, because he said, Whatever I am experiencing on my left side, he said, it’s not your back. It’s not anything like that going to the hospital.

    Bill 8:52

    I argued with my wife, she told me I looked funny. It was seven days before I went to the hospital and finally saw somebody about it. And then they found a bleed on the brain. But what’s interesting about you is you wanted to go to the hospital, you wanted to get a diagnosis. And then when you got the opportunity to go, you didn’t want to be there because it was inconvenient. What the hell’s going on in your mind?

    Stacy Quinn 9:16

    I don’t know, Bill. I mean, I learned so much from this experience, right? Like I always say you need to be the CEO of your own health. if something isn’t right, you need to act on it. But I honestly just think that we don’t believe something like that can happen to us and our mind goes a different way.

    Stacy Quinn 9:34

    And I really don’t know why I was being so I was stupid. And I think after this at my episode and my stroke and everything I was very angry with myself for not recognizing the symptoms of stroke, but no one really taught them to me, and when I googled images of stroke were old guys.

    Stacy Quinn 9:55

    They were old guys. There was no sign that there was some young woman that this happens to and then I learned through all of this that more women have strokes than men. And we’re commonly misdiagnosed. But that wasn’t anything I learned until it was almost too late, unfortunately.

    Bill 10:10

    A female is at greater risk of dying from stroke than she is of breast cancer. And breast cancer is one of the worst is one of the best-known issues that women face. And we talk about it and we raise awareness.

    Bill 10:24

    And there’s in Australia, there are events every second minute. And you know, it looks like they’re getting all the money from everybody for everything. But yeah, strokes like that. It’s one of the reasons why I became a stroke-safe ambassador in 2013, after the first and second bleeds.

    Bill 10:41

    And it was to just raise awareness because again, I was 37 I had no idea what stroke was, and I only ever considered, I only ever again pictured old people like my granddad type people who had a stroke, you know, and we were all caught by surprise, the whole family was shocked that this was happening.

    Bill 11:06

    What was it like for your family? Because there’s seven days or 10 days that you’ve done nothing about it? And then all of a sudden you’re in the hospital? What’s the conversation you’re having? What happens?

    Stacy Quinn 11:18

    You know, I think everybody was just shocked as this happened to Stacy. Stacy goes to the gym five weeks, Stacy, that’s a vegetarian. I mean, and I was adamant about my wellness checks going to the doctor, I just think there were a lot of shocks that it happened to me.

    Stacy Quinn 11:37

    And honestly, I don’t know how some people knew how to react. I found after this experience that people that you thought would be there for you suddenly weren’t. And I felt like some people avoided me like I was a ticking time bomb in some ways. And then people that I hadn’t talked to in years, some people came out of the woodwork.

    Stacy Quinn 11:58

    So that to me was really interesting. And what I found afterward was because I left the hospital. And because I looked like the same Stacy before, and granted, all of my scars were invisible. And a lot of my symptoms were, you wouldn’t know that I was exhausted my head hurt for months after the fact, I was told I was likely that I could have another stroke within the first 90 days.

    Stacy Quinn 11:58

    So every time I went to bed, I thought am I gonna wake up? So I think that while I was having that I think a lot of people in my life were like, oh, we’re a little afraid of her right now. I mean, my family was great. They were supportive. But there were people that were like, Oh, no, is this contagious, or it was just some reactions really surprised me.

    Bill 12:49

    It’s common. And the thing I had the same experience, the people that came out of the woodwork that saved me. And I’m not talking about the doctors and those guys, their next level of heroes, but the people who saved me emotionally were not people who I expected.

    Bill 13:09

    They came from nowhere, people that I knew, just every once in a while. And as a result, we became really, really close, the people who kind of moved away, I feel because they don’t know how to act around somebody that is unwell and that they know how to make it about them, about the person who’s unwell instead of themselves.

    Bill 13:30

    So you know, when those I had people turn up to the hospital, they do the whole Oh, my God, you had a stroke. But you know, I stubbed my toe the other day, oh, my God, it was so bad, you know, my toe this, and my toe that, and it’s like, hang on a second. It’s not about you, this time it’s about me, shut up and don’t talk.

    Bill 13:48

    And those people were better off just turning up and giving me a hug and saying, Here I am, and not feeling anxious or nervous or worried about what to say. Just tell me they love me and hug me, and that’s it.

    Bill 14:02

    So I was kind of glad that they kind of went away because I didn’t want them around anyway, they were just negative energy or they were bad energy. And they didn’t know they were being that way. They just were that way.

    Bill 14:16

    So I kind of figured that. What I’m feeling from them not being here is they’re doing me a favor, actually. They’re giving me the best gift they can give me by not not being around. Because intuitively somehow they know them being there is no good for me. So I went with it. Can you relate to that?

    Stacy Quinn – Rushing Recovery After A Stroke

    Stacy Quinn 14:40

    Yeah, yeah, absolutely. And then, you know, some of the people came back after you know, I was a bit better and you know, that was fine, too. I just think that people I think also when having a stroke and a lot of your scars are invisible. I mean, I remember going I went back to work way too quick.

    Stacy Quinn 15:00

    But I needed a sense of normalcy. And then I had these panic attacks that I needed to be near my doctors, which were in another state in New York. So if I was in the office and something happened, I can get there really fast.

    Stacy Quinn 15:13

    And I remember there were days afterward where I’d have to lay under my desk, go, one of my colleagues that worked for me, I said, can you please cover? I just need to close my eyes, my head hurts.

    Stacy Quinn 15:23

    And I would actually lay under my desk for 15 minutes, and close my eyes, and then go back to work, I really should have taken time off. And that’s something that I would advise anyone that goes through something like that, but I was in this mode where I needed my normalcy and I needed to be next, those doctors just in case.

    Bill 15:40

    That’s for the highlight reel, what you just said, You used to lay under your desk to sleep that desperate you that desperate to calm your brain to keep it chill and quiet for a little bit. And then you actually even got them to cover your desk? With what?

    Intro 16:00

    If you’ve had a stroke, and you’re recovering, 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 16:18

    Doctors will explain things. But obviously, because you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you find yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 16:39

    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 the stroke. They’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.

    Stacy Quinn 17:13

    Oh, someone would cover for me while I was under my desk if something came up. I didn’t have a tent or anything. But yeah, someone would, would cover for me like I just say I need 15 minutes if anyone’s looking for me because it was just crazy.

    Bill 17:31

    But this is common, right? This is exactly what people don’t understand the fatigue, the overwhelming of the brain, even the bright lights from the fluorescent globes above your head. Tell me about it.

    Stacy Quinn 17:42

    Thank you for saying that, I afterward would go to certain stores. And I’d have to walk out because of the lighting, I would start to get a headache. And then I get nauseous and I thought I was going to throw up.

    Stacy Quinn 17:43

    And I think people thought I was crazy. I would walk out of stores because of that exact reason. And it’s all these little things that I don’t think people realize that you’re going through afterward like having, I mean, I went back to work sleeping under my desk, I can’t go into certain stores because of the light.

    Stacy Quinn 17:43

    You know, having to manage stress, because stress isn’t good. not sleeping at night because like, Am I gonna wake up? Is this gonna happen again? I don’t know. And I’m six years later, and I’ll have to stay. I still have those nights where I lay down and I’ll think, am I gonna wake up? Because I’m lucky. This all happened to me while I was awake. Had I not had that moment when I might not have known.

    Bill 18:38

    Yeah, yeah. What was the underlying cause of the dissection? Do you know?

    Stacy Quinn 18:45

    No. So there are two ways that you can have a dissection. One is it’s traumatic. You have a car accident, you fall, something happens and mine was deemed spontaneous because we can’t connect it to a moment.

    Stacy Quinn 19:00

    But then in my head, I rewind, did I lift a weight wrong? I remember being in the parking lot of the supermarket and having a cart, and they had these things that stopped the cart, so you can’t go far with it. And I remember it stopped and my neck went back.

    Stacy 19:14

    Was that the moment? It’s just something that I’ll never know. And that was something that was tough afterward, too, because if we can pinpoint something I did, I’ll never do it again.

    Stacy Quinn 19:24

    But I really will never know why it happened. I’ll never know if it was partially caused by stress. I was under a lot of stress. I wasn’t sleeping. I go through my mind. It could be 100 things that cause that I’ll just never know. And maybe it was the wake-up call. I needed to slow down because I was probably on a bad path.

    Possible Carotid Artery Dissection Causes

    Bill 19:47

    So many people say that look, the dissection it’s most likely a trauma-related dissection because the trauma doesn’t have to be dramatic like it can be a minor trauma. Some people that I’ve spoken to, will tell me it was the most minute thing that they did that cause other people will say it was a car accident, and it was whiplash.

    Bill 20:08

    And there’s a whole bunch of different reasons. So I reckon it was a trauma, you just might not have noticed that. And a trauma could be just stretching in the wrong direction, it could be anything.

    Bill 20:17

    And unfortunately, the artery decides that it can hold or bind together. And, and that’s what loosens is some people have a blood vessel disorder where they have, you know, atherosclerosis very early on for another unknown reason, I’m not sure what the reasons are.

    Bill 20:35

    So there’s a ton of reasons. But I think, all in all, if you’re somebody who is healthy, “healthy” we don’t really know what that really means. But if you’ve been a vegetarian, and if you’re have exercised, and if you’ve paid attention to what you drink, and whether you smoke and all that kind of stuff.

    Bill 20:58

    You are unwittingly supporting your body and helping yourself to get to that point where if in the event that you have a life-threatening situation arise, you’re in a better position to recover from it and recover from it well and maybe minimize the trouble.

    Bill 21:16

    And even people who are say, not vegetarian, but eat some protein, but go about life, the way that you go about life, which is you do everything else, and you eat a little bit of protein, but you refrain from, you know, the McDonald’s burgers every second day and all that kind of stuff, you’re very likely to be very well balanced, and in a really good shape to recover from that.

    Bill 21:40

    So I think you’re doing all the right things, you’re exercising for all the right reasons, probably to look good, feel good, you know, be healthy. And here you go, it paid off. This is a classic example why exercise is really important. And the rest of it is just randomness.

    Bill 22:00

    That’s kind of where I’m at the blood vessel in my head burst. It was an arteriovenous malformation. It’s kind of a malformed blood vessel. So it didn’t need trauma to burst. It just needed time. And because it’s a lot thinner and not fully formed, it just kind of wears out a little bit quicker, and it pops.

    Bill 22:08

    So I did the same thing that you did, I thought about all the stuff that I had done. And I did end up saying I was overworked. I used to smoke. I used to drink, not heavily drink, but I used to drink. But I used to smoke, I would still work too many hours. I never knew what it was like to go in the wood and meditate and calm myself down.

    Bill 22:47

    I never had the signs from my GP that I had high blood pressure or cholesterol or any of that stuff. There was none of that. But there was this underlying cycle of me just burning candle at both ends and just not being right.

    Bill 23:04

    And that’s kind of one of the things I was able to do was go, Okay, all right, time to reset. If I get through this drama, then I’ve got to make some serious changes in my life. And I went about doing those and putting that in place. Right. So it sounds like you’re on a similar path.

    Stacy Quinn 23:22

    Yeah, you know, I think though, after everything happened to me, I was angry Bill because I did everything right, when I look back, I didn’t do all right for myself. And then this like happens to me. And you know, I went from being able to plank for 30 minutes, I could do all this to being told you can go back to the gym, but you can go on the treadmill starting back at five minutes.

    Why Me?


    Stacy Quinn 23:49
    I went from being in perfect health to starting all over again when I had done everything right. So I will say that was something I battled afterward like I was pissed off about that. Like, why me? I did it all right.

    Bill 24:04

    So how did it work out for you? Why me?

    Stacy Quinn 24:08

    You know, I am very grateful I had I’ve had a good outcome. I have some residual side effects. I’ve some things I can’t do. But I am grateful that I had the outcome I have. I’m still here. Part of me thinks that it happened to me One, is the sign is like a girl you got to slow down and Two, I’ve been able to take my story and educate people and I didn’t want to do it at first Bill.

    Stacy Quinn 24:33

    One I was embarrassed a little bit and I don’t know why I didn’t want to admit that this happened to me. And I was also afraid could it affect me getting a job down the road that I’m like I have a blemish on me. So I really didn’t want to share my story or get into the stroke awareness area.

    Stacy Quinn 24:48

    But I went to an event that a friend dragged me to because I think she saw I was struggling where there were other women stroke survivors and heart attack survivors. And I stood in the corner and didn’t want to talk to any of them stood there. And then one by one, they started sharing their story and talking to me.

    Stacy Quinn 25:07

    And then it was kind of like the eye-opening moment I shared my story, the tears are flowing. It’s like, it was like the moment I started to heal. And I thought, you know what, I can do some good with this. And this is what I’m going to do.

    Stacy Quinn 25:20

    So I don’t know if in some way, if it was, Hey, this is going you can help other people and do something with this, which I certainly hope through the work I’ve done over the past several years that I have been able to help people.

    Bill 25:33

    Yeah, I think you have. So Curiously, though, I want to try and take you back to that time. Do you know when you’re doing that, why me? And you’re pissed off and you’re angry? At that time? When you’re doing the Why me? Is that making it any better? Or is it making your feelings worse? How is it impacting you when you’re doing the self, what’s the word?

    Bill 26:00

    Like, when you’re feeling sorry for yourself? Is that helping you? Or not? Does that make it worse? Is it harder to break out of that? What’s going on in your head? Because I never really did the Why me? So I don’t get why people do it. And I’m not saying they should or shouldn’t I just don’t get it. How does it play out?

    Stacy Quinn 26:20

    I think it was part of mine. Because no matter what I changed as a person, the moment that happened, I think was part of my grieving process. I think I needed to go through the Why me blah, blah, blah.

    Stacy Quinn 26:33

    And to get to where I was today, I really think that was part of my kind of grieving of the old me because I am much different than the person I was before that. And I like I’m much happier with the person I am today.

    Stacy Quinn 26:47

    But I think that was part of my grieving process. And maybe a way, I don’t know, some weird way of dealing with the stress. I mean, I was a mess. I tried a therapist, and the guy just kept going back to my childhood. I’m like, dude, I almost died. That’s what I need to deal with right now.

    Stacy Quinn 27:04

    Past whatever I need to deal with. The fact is, I almost died and why am I here? And I struggled with that just trying to find the right person to talk to and help me and actually ended up finding a personal coach, who I don’t know, he just ended up connecting with me and really helped me kind of process everything that had happened to me, coaches are different.

    Bill 27:23

    So counselors are really important. I went to see a counselor as well. But I’ve had coaches, I’m a coach, as well. So coaches are different because they deal with helping you solve that little problem that you have right now the one How do I get over this? How do I get better or whatever?

    Bill 27:39

    And it’s supposedly focusing, you want that task. And that sometimes is the trigger for people to then go back and deal with the emotional trauma that psychologists want them to deal with, which is really important as well.

    Bill 27:53

    It’s why I call stroke has three pillars to recovery, it has the physical, which gets the most work, and then it gets mental get some of the work. And then the emotion hardly ever gets any work done to it right?

    Bill 28:08

    So they’re the three pillars of stroke recovery. And if you neglect one of them, well, your recovery is not going to be the fullest. Son, I think if you get the order, right, you try it out one way, and the order was wrong.

    Bill 28:21

    But for you, it needed to start with right here right now. I nearly died, how do I deal with the anger and get over that you’ve done that? And then your counselor says you go back to your counselor can deal with some of that emotional stuff from the past, which is what I dealt with.

    Bill 28:38

    And that made me create better relationships with the people that I wanted to heal my relationships with Mom and Dad, not that I had bad relationships with them. I just felt like if I craved it, then maybe I didn’t say I love you enough.

    Bill 28:53

    Or maybe I didn’t get over their shortfalls or, you know, and my brother and my kids and all that kind of stuff. So dealt with the coaching, dealt with psychology, and also then did the physical work just as part and parcel of the recovery from the hospital. So that’s why I think a lot of people get a lot of results with coaches because coaches don’t give a shit about your past much.

    Bill 29:17

    They just care about what you want to achieve right now. It’s like a tennis coach, you know, he wants to make sure you get the ball into the net. Not into the net above the net on the other side of the court. That’s all.

    Stacy Quinn 29:32

    Exactly.

    Bill 29:33

    So how long did it take you to get over yourself?

    Road To Recovery And Finding Purpose


    Stacy Quinn 29:40
    You know, gosh, I mean, I still have moments right? But um, I would say it was a good two years, a good two years and I think when I started volunteering and sharing my story and using it to make a difference was when things got a lot better for me.

    Stacy Quinn 30:00

    Although there is a flip side to that, because reliving the worst moment of your life and retelling your story, it’s not an easy thing to do if I learned first starting out, but it got a little easier over time, but I still choke up, and I would still It depends, like, I could tell my story, and I could cry. It just depends on where I am emotionally.

    Stacy Quinn 30:20

    But I’ll say it, you know, it really was a good two years, and I still to this day have like, I like had my moments. And I think I’m always fearing. So I miss symptoms of something before. And now I felt like afterward, I was a little over too much. It was like, Oh, my gosh, I got a headache.

    Stacy Quinn 30:38

    Like, I started panicking with everything. I’m much better about that. But I’m also I’m more aware of my body. And with these doctors, I asked the questions, I do my research, and I advocate for myself, which I probably should have done with those two other doctors, but I didn’t know any better.

    Bill 30:54

    Yeah, you don’t know how to you know, you’ve never been in that situation before. You’re not a stroke expert. If you’re a person who just had something happen to them. I mean, how do you suppose to know? I had, I had episodes on stage where I’ve fully broken out in tears, and had to take moments, you know, plenty of time to compose myself and get back to the story. But you know what that does, that just makes the audience gets sucked in for you even more, and they just love you even more after that.

    Stacy Quinn 31:24

    It keeps it real. It’s my real emotions. It’s my story. And it’s, you know, it’s something that’s very close to my heart that I share with people.

    Bill 31:34

    Yeah. And I’m the same I’ve been, you know, nine years down this path. And I was at a party. I think I mentioned this in a previous podcast episode as well. I was at a party. A friend of mine, one of my most amazing friends is a female. And she has a group of friends that she hangs out with, she calls the soul sisters.

    Bill 31:56

    And it was her birthday, and she decided to have this birthday party. But her other friend, one of her soul sisters decided to organize the party on her behalf. And it wasn’t a surprise party, but she did all the organization or the planning for it. And Robin asked Louise, how many do you know, who would you like to invite?

    Bill 32:18

    And Louise said, my soul sisters and Bill, right? So I went to this party is 11 other females, my wife included me, right? And it was a really strange place for me to find myself in Normally, you know, there’s men and there’s talk about football and all this rubbish. But this is a really emotionally heavy party.

    Bill 32:41

    And just from a loving, kind, girly kind of space. Right was really cool. So I found myself in conversations with women, who I’ve done plenty of times before. But this one particular lady came to sit next to me she started asking me questions. I was crying for about an hour solid. I couldn’t get a bloody word out.

    Bill 33:01

    I was just in tears. I was whatever. But of course, I was in the perfect group of people because they don’t care. Girls love it, you know, and they were supportive. And they were hugging and they were telling me all these things and it was a really lovely way to just find without knowing it was the perfect time to express myself and get another layer of trauma or something off my chest. Is that how you feel it? Do you kind of feel that as these layers come off?

    Stacy Quinn 33:32

    Yeah, it’s somewhat therapeutic. I mean, I feel like I mean, I can get through my story now pretty well without, but it just depends on where I am or if there are other people speaking about their stories and their survival. But yeah, there is something about that. And I was really lucky that I found this group of women who all have one thing in common they survived these health crises.

    Stacy Quinn 33:59

    And when I was talking with them, and they were so brave and sharing, I’m like, what’s my problem? Like they and they had I mean, I’ll say a lot of them had much worse stories. I mean, being you know, being revived, actually dying and being brought back to life. And I’m like, what’s my problem? I mean, it wasn’t that bad compared to this. So yeah, definitely.

    Bill 34:20

    Yeah. Sometimes comparisons are healthy, isn’t it? How old were you? I was 41. Yeah.

    Stacy Quinn 34:29

    41

    Bill 34:31

    It’s too young. I hear you know, there’s so many people and then you hear children had strokes and all this stuff. And it’s like, everybody’s too young. There’s no such thing as if you’re about the right age to have a stroke or the right age to nearly die. There’s no such thing is there? It doesn’t matter how old you are.

    Bill 34:50

    So when you’re at your worst, like what’s working for you and what’s not working for you sometimes people We’ll go through this cycle of being into a little bit of a low spot. What did you find? Or reflecting back now? What do you notice wasn’t working for you, with regards to the way that you were trying to move forward?

    Taking Time To Heal After A Carotid Artery Dissection

    Stacy Quinn 35:17

    What wasn’t working for me, I don’t? Well, I think the one advice I’d give is, you know, give yourself the time to heal. Jumping back to work was a big mistake, I had a stressful job. And adding to that was just not that much better. So I think that that was something I really learned. Um, and I think you can’t over-expect too much from people, like we discussed, people are going to react to you differently.

    Stacy Quinn 35:43

    And that’s just their way, it doesn’t mean that they don’t care. But a lot of people just don’t know what to do with that when something like that happens to them. So I think that that’s something really important. And I think, you know, I just, I think I put too much stress on myself to get back to where I was not knowing that I never really will be back to where I was like, is different.

    Stacy Quinn 36:08

    But I just think I kept putting pressure on myself, I can still do all this I’m going to do, I just don’t think I just wanted normalcy. And it was never going to be the way normal was before. And I wish I would have known that and given myself more time to heal more time to recover rather than rushing back into the life that I used to have.

    Bill 36:27

    Isn’t it interesting? A lot of people do say to me, I just want to get back to life before the stroke. And it’s like, dude, the life you had before the stroke, led to a stroke? That’s the last thing you want to get back to you want to understand how you got there and tweak it so that you don’t go back there again.

    Bill 36:49

    That’s what I would encourage you to do. And it’s really strange when you hear that, but it is the first instinct. It’s like, Oh, actually, you know, I even me it was like, if I just go back there, everything would have been because I hadn’t had a stroke yet. I’ll still be at work and am still making money. You’re still doing this. I was still doing that. But really, it was just that moment before everything turned bad.

    Stacy Quinn 37:15

    Oh, absolutely. I mean, I was working. I think they recently came out with a study that people that work more than 55 hours a week have a 35% chance of having a stroke. I mean, I was like one of those people, it was like, Oh, I’m gonna commute three hours, I’m gonna work 12 hours a day.

    Stacy Quinn 37:31

    And, you know, I look back. And what good did that do me, like, at the end of the day Bill, if I would have dropped dead, they would have replaced me and other people would have taken the job. Like, that’s a hard thing to start to get through your head. But I think there’s a way to do a good job and work really hard. Without going to that extreme.

    Bill 37:52

    Yeah. A friend of mine said that to me many, many years before my stroke, but he described it a little bit differently. He said, You’re on a bridge, and the traffic is backed up for many miles. And there are cars everywhere, you can’t move, and just somehow a crane comes over and picks up your car and just gets rid of it and puts it away.

    Bill 38:16

    Is anyone going to notice the difference? Is it going to change anything? And I was like no. And it was his way of trying to make me understand that I’m not as important as I think I am like, pull your head in and just settle down and just take it easy and enjoy what’s happening right now.

    Bill 38:32

    Because no one’s gonna notice you’re gone in a global scale. No, it’s not gonna really make a difference. So that’s a really hard lesson it is it’s a hard thing to comprehend and then to then take action. Okay, so what does that now mean? What am I supposed to do with that information?

    Bill 38:51

    Well, here we are, unfortunately, both of us down the track, we had to have this dramatic thing happen. And now with that information, we’re going okay, now’s the time to reflect and change some things and do something different now. What are some of the things that you changed?

    Stacy 39:08

    So I definitely think, well, one, I’m an extremely I’m more grateful person, like, I don’t think I appreciated half the stuff that I did before this happened to me. And that’s unfortunate that it took almost dying to realize, well, you know, these things are really important. With work, I work extremely hard, but I’m not going to throw myself into the tailspin of it’s constant. I won’t do it because I somehow think that had something to do with my situation.

    Stacy Quinn 39:44

    So I have to kind of set boundaries which is really hard for someone like me, I’m a type A personality, I want to do everything but I just can’t and I have to realize that I think I take more time for myself to rest before all of this I I wasn’t sleeping that much, maybe five hours a night or so I really take the time to rest.

    Stacy Quinn 40:06

    And I have to because my body now tells me when I’m not, because my headaches will come back. And that’s kind of my body saying, Stacy, you overdid it, you need to take to scale it back. And I will make sure that I take that time to scale back because my body is definitely telling me that, what else? I mean, the volunteers have changed for me.

    Stacy Quinn 40:29

    You know, I’m embarrassed to say I didn’t get back to my community. Before all of this. I never thought about that. Like that wasn’t you know, I’m working. I’m doing this. And I’ll have to say, the volunteer work that I’ve done. And the people that I’ve met have been one of my greatest gifts in life. And it took this for me to get it. But I am so grateful for that. And that’s been one of the bright spots of all of this.

    Bill 40:53

    Yeah. And what about physically and moving around, exercise that kind of thing? Have you gone back to the gym?

    Stacy Quinn 41:01

    I have gone back to the gym, I love the gym. But I have restrictions. So like I can’t lift heavy weights over my head, I have certain weight limitations. I can’t do yoga, I can’t play at plank. Basically, I can’t do anything that’s going to put pressure on my neck because I still live with the 40% blockage and the bad artery.

    Stacy Quinn 41:20

    I have a small pseudoaneurysm that we have been stable and we don’t want it to do anything because that would not be good. So and you know, I can’t skydive, I can’t go on a rollercoaster. But honestly, that stuff that I didn’t really care about before. So I’m a little mad about some of the restrictions at the gym, because I really like to go at it hardcore. But you know, my doctors gave me the instructions. And I followed them.

    Bill 41:47

    Doctors giving instructions to type A personalities, and then just seeing their brain, just go.

    Stacy Quinn 41:55

    Oh, I’ve been lucky. My doctor has been an amazing partner and all of this and reviews my presentations from a medical perspective. And I have to say, you know, I’ve had some scares in the past five years. And he has gotten back to me right away. And we’ve done what we needed to do, just to kind of check on things. So I’m grateful that I’ve really had such I’ve had such great care. Once I got past the people that might have misdiagnosed me I got to the right people.

    My Stroke Of Hope

    Bill 42:21

    Yeah. On Insta, your Insta page is My Stroke of Hope. What’s all that about? Why do you do that for?

    Stacy Quinn 42:34

    You know, I feel like my stroke of hope was something that gave me hope in terms that I can help survivors and I can help caregivers. So I kind of say it is my stroke of hope. It’s something that gave me hope. And I hope it’s something that can give others

    Bill 42:52

    Well, why do you do it?

    Stacy Quinn 42:54

    Why do I do it? Um, because I want to help people, I don’t want people to go through what I went through, I want them to recognize stroke symptoms right away. I mean, Bill had I known my blockage probably wouldn’t have gotten the 90% if I had gotten help right away, my artery probably would have healed I wouldn’t have gotten the pseudo aneurysm.

    Stacy Quinn 43:15

    And, you know, I was moments away from what could have been either a life-changing or life-ending situation. So I don’t want anyone to go through what I went through. And I’ve always said, If I could help one person, it would all be worth it. And recently, I was speaking at an event and someone heard me go over stroke symptoms.

    Stacy Quinn 43:34

    And a couple of days later, they got a phone call. And they said so and so sounds like they’re drunk on the phone. And he’s like, Well, that doesn’t kind of seem like that person. You know, call them back and ask him these questions, call them back. He didn’t really have any of those symptoms, but he had a bit of slurred speech, and they called an ambulance and got it to the guy’s house and he was having a stroke.

    Stacy Quinn 43:56

    So hey, that guy knew that because I gave those symptoms. So I’ve helped one person. That’s all I wanted, but I’m not done. I’m not done by any means I have more work to do. But that’s why I did this. So I at least know of one person that I’ve helped and that makes it all worth it.

    Bill 44:13

    Stacy Quinn. I love you. Oh my god. That’s why we do it. That’s it. That’s why we do it. Right. It’s exactly why you do it. You didn’t know that that was going to happen. you hoped for it. And now every other person after that’s going to be a bonus. What an amazing bonus.

    Stacy Quinn 44:30

    Yeah, I was like when I heard the person tell me that I started to cry. And I was like, you know, I’m gonna get emotional now. But that’s why I’ve done all of this and like I’ve spent my free time I just wanted to know that I could help one person from going through something and thankfully the guy’s okay and is recovering. And that is what’s made it all worth it.

    Bill 44:51

    That’s beautiful. That’s, that’s it. I love it. I am so glad to hear that. I mean, I hear that every day but it just doesn’t stop making me feel amazing and I start getting, you know, the hair on my neck standing up and I started to feel off warm and fuzzy inside. And that’s it.

    Bill 45:07

    That’s exactly why you do it and you have made a difference. And that is part of the recovery, isn’t it? Isn’t that part of the recovery, such an important part? Who would have thought that Stacey Quinn’s types A personality worked 24 hours a day, seven days a week, one day was gonna make it about somebody else? Really?

    Stacy Quinn 45:29

    Yeah. So yeah, that’s, I think that’s why I do it. I mean, I also raise money for research, I think that’s really important. Because without research, I don’t think those doctors would have known what to do with me, because carotid artery dissection is like, every major hospital from my doctor says they only see about five a year, although I think it’s a lot higher, and people are misdiagnosed. But um, without that I wouldn’t have gotten the treatment I had. So the research part is also something I’m passionate about helping with.

    Bill 45:57

    Well. So how do you raise money? What are specific ways that people can help out? Or is it just through the events that you do?

    Stacy Quinn 46:07

    So, in the US, the American Heart Association, and American Stroke Association, I’m on the local board here. So I recently did a campaign for cycle nations. So it’s about riding your bike raising stroke awareness and raising funds. So I did that, you know, every year we have something it’s called Go Red For Women.

    Stacy Quinn 46:29

    And it raises awareness about stroke and heart disease and women. So I chaired the launching a few years ago to raise money for that. So it’s, it’s primarily through the events that I do through the organization that I support.

    Bill 46:41

    Yeah, awesome. So I know there’s Go Red For Women. What about the men?

    Stacy Quinn46:45

    Well, we don’t have there isn’t a specific organization for the men part that falls with I guess, within the American Stroke Association.

    Bill 46:56

    Yeah. Isn’t it interesting, and I didn’t say that to make you feel bad that you’re not helping you obviously are, I say that, because most of the people that I interview are women, most of the people who have causes like this are women. There are some amazing men that are involved in my community that are online and all that kind of stuff that are doing great work.

    Bill 47:17

    But there are not a lot of proactive men out there supporting themselves. In this way, maybe they’re doing it in other ways that I’m not aware of. But I find, and even in the presentations that I did in the times I spoke publicly, there’s hardly ever any men in the room, it’s always women. And I don’t understand that, like, it’s really strange and bizarre. I know that men go through just as much stuff as women do, but they’re not there.

    Stacy Quinn 47:46

    Yeah, and we’ve, you know, we’ve done a lot to try to get men involved as well, because, you know, women have strokes, heart, attacks. And it’s also important for them to recognize the sign so they could help their mother, sister daughter, as well. So we’ve tried some initiatives, also to get more and more men involved in that, because it is really important.

    Bill 48:08

    You have to get a baseball player or football player at that event and tell them they’re coming there to see a baseball guy.

    Stacy Quinn 48:15

    That didn’t work.

    Bill 48:21

    I know, it’s a very interesting theme that’s being that I’ve seen for many, many years now. And I always sort of say that, and I even do a presentation at a university here locally. And I share my story. And it’s a third-year occupational therapy student. So they’re going into occupational therapy, practical lessons the following year.

    Bill 48:42

    Where they’ll be working with patients, I imagine. And even in those rooms, the majority of the people are women, and the men are few and far between. So I always joke with them. And I always tell the two guys in a room of 20 women that they chose, well, you know that they’re very, very smart for being there.

    Bill 49:04

    So that’s kind of what you get. It’s an interesting thing, for me is when I find a really caring, supportive guy, it’s a very next-level, amazing feeling for me, I can’t relate to enough men that do that. And when I get somebody like that, it really impacts me, personally, more deeply, because I don’t know that’s just something about men helping men is just very different.

    Bill 49:33

    And I think we miss it. And I really think we miss it because we’re not brave enough to put ourselves out there because you know, we have to not cry. We have to be tough. We have to overcome everything. So yeah, it’s a really interesting part of recovery that I’ve been missing on being missing like connecting with men.

    Bill 49:55

    So when I get it online, I get really excited.

    Stacy Quinn 50:00

    We have a pretty big following.

    Bill 50:01

    So yeah, it’s getting there. And a lot of guys that do interact but far outnumbered by the women. And I don’t know, there are a lot of men’s organizations doing good work, and they are breaking down some of those barriers, it’s just really hard for me to understand what would make a man want to interact.

    Bill 50:27

    Whereas with me, I just had to, I didn’t think about it, I didn’t worry about all the stuff, I’ve got to pretend I’m not. I just, I had to do this. Like, I just couldn’t not I was missing, and I needed it to help the healing. So what I’m saying this may be because there are some men listening who haven’t stepped up and haven’t gone out of their way to seek help or to be part of a community. And maybe they’re listening, and they’re going, alright, maybe Bill’s giving me permission to maybe I can do this now.

    Bill’s Upcoming Book

    Stacy 50:58

    Absolutely. Maybe, I know. You have a book you’re working on maybe that I don’t know if that’s part of it.

    Bill 51:04

    Yeah, it’s all part of it. The book that I’m thinking of is, yeah, I won’t reveal the name of it at all. But yeah, it is about that. It’s about actually breaking the barriers of all these supposedly things that not only men, but that we’re not supposed to do, because society said we shouldn’t do or whatever.

    Bill 51:27

    And I think we get diverted away from the real way, we need to go about our own lives by all the noise that happens around US media, advertising, you know, all the marketing things that are diverting us and telling us to go to work for 36 hours a day, and all that type of thing.

    Bill 51:47

    So I just want to bring it back to the basics. And that’s what the books gonna be about. It’s guys, all you got to do is the basic stuff. And if you can get out of your head, really. And stop overthinking things, and just go back to basics, you’ll have a much more fulfilled life much more amazing life. I complicated my life by doing this podcast.

    Bill 52:10

    But for me, this was a back-to-basics step because I needed a community that I didn’t have an ear. The only way to get it was to learn all these million things about how to get a podcast live. And once I got it live, I found the community because in my neighborhood, there’s just there isn’t an abundance of stroke survivors, they want to go hang out at the local cafe with the local pub and around the world. Apparently they do. So that’s why.

    Stacy Quinn 52:38

    It is amazing the people that I have a great person I connected with what a carotid artery dissection in Israel, a woman in Ireland like, it’s amazing the community that you develop through through social media and the people that you connect with and how much you have in common with them and their miles and miles away. And I’ve met some really great people.

    Bill 53:00

    Yeah. Have you met Clodah Dunlop?

    Stacy Quinn 53:05

    I don’t think so.

    Bill 53:06

    So Clodah was on my podcast as well. I’ll tell you the episode number while we’re chatting. I’ll scroll through and find it Clodah was a police officer, she was involved in a very minor collision. And in that collision, she experienced some whiplash, and then a headache.

    Bill 53:26

    And then all the things that you’ve described. And that collision created a dissection. And eventually, she ended up in the hospital and got treated, and she woke up with locked-in syndrome. So she’s able to basically just blink our eyes and blink. And that was the only way she could communicate.

    Bill 53:56

    So I interviewed her for Episode 38 way back at the beginning. And she’s a really cool person because she talked about how she used to go into potential sites where maybe, you know, the local terrorist group had set up bombs and that kind of stuff. She was working at that level.

    Bill 54:17

    And then she says, and a little minor collision in a vehicle caused her to be wiped out. So she’s an amazing lady. She’s great online. I’ll share the link of her Instagram feed as well and the link to the episode. It’ll be in the show notes. But I’ll send it to you personally.

    Bill 54:35

    You’re going to really connect with her. She’s amazing.

    Stacy Quinn 54:38

    Thank you. I look forward to that.

    Bill 54:40

    Yeah. And after being locked in and not being able to move or walk or any of that stuff. She eventually went back to work and now she’s back as a police officer. And I’m pretty sure she’s a detective now and she’s going around, doing amazing things.

    Stacy Quinn 54:58

    That’s inspirational.

    Bill 55:00

    That’s That’s it. That’s why we do this right. That’s why we share our story to inspire others who are listening that maybe as time passes and plenty of healing happens, you can get to the other side, right, which is back to life in some way, shape, or form.

    Stacy Quinn 55:14

    Absolutely. You just don’t think it when you’re in it at the time, but that’s exactly.

    Bill 55:18

    It’s hard, isn’t it? You’ve been going through this now for what, six or seven years? So I imagine there was a real lot of low moments as well. Were there times when you had really difficult days, you thinking all the worst things you could possibly think?

    Stacy Quinn 55:37

    Yeah, I think so. Especially in like the first I’d say six months, we’re just like, I just, I had so many sick, I just didn’t, I had so many symptoms that people like you wouldn’t even like realize. And I’m like, do I want to live like this? I did have moments where I thought if this is life, I’m grateful to be here, but I’m not 100% sure that I can live with an ongoing headache.

    Stacy Quinn 56:03

    I can live with my neck pain. I’m dizzy, I’m nauseous, like, Is it ever going to go away? And it does, it gets better. But at first, you’re thinking, if this is the new norm, I don’t want to be. I don’t want to I don’t want to do this. So I did have some moments like that where I was like, I’m not sure I want this.

    Bill 56:19

    Yeah. What are you living with has left you with some deficits and things I know, sometimes you get tired and your body tells you when you need to rest. But is there other things that it’s left you with?

    Stacy Quinn 56:31

    I think you know, really, like the tiredness and I still get the headaches. I cannot I’ve had trouble connecting. Like if you say right, I got to really think about it. You say laughs I got it. And I usually go the opposite.

    Stacy Quinn 56:46

    But I’ve been working out with my personal trainer and doing the stuff I’ve gotten a lot better. And I had a breakthrough actually two Saturdays ago where he told me to do it. I didn’t even think about it. It just happened. And I was like, Oh my gosh, I usually I’ve got to pause and I really have to think hard about it.

    Stacy Quinn 57:02

    And I avoided taking group fitness classes because of that, because I was embarrassed, I couldn’t do it. But during the pandemic, when we locked down, the only option to work out I had at the gym was they were doing outside classes, and I thought I couldn’t do it. I don’t know.

    Stacy Quinn 57:17

    And then I said, you know what I got to get out of the house, I’m gonna go do it. And that was of my, one of my happy moments in the pandemic it forced me to go out and do something uncomfortable. And I was like, Oh, no, these people it’s fine. If I mess it up. And then it’s really helped my brain get that back. So I still have my moments, but it’s definitely I had my breakthrough. And it’s definitely better.

    Bill 57:39

    Yeah, interesting that thing, where, where, and where you tell me to write down one of those words in the correct context, I have to think about it. And on another piece of paper, I have to write all the different ways and try and understand which were to apply to the way to the appropriate way. I mean, it’s ridiculous. But it happens all the time. I can’t. I’ve never been able to just write the correct way. And now it’s the right one. I’ve just, I struggle with it.

    Stacy Quinn 58:07

    It’s crazy, because like my left and right, used to be quick with it. And then I’m like, wait, and then by the time I figured it out, the instructors gone on extra size. So but it’s definitely gotten better. And it was interesting. My eyesight afterward was messed up because I had I guess a bunch of blood vessels messed up.

    Stacy Quinn 58:29

    And I had to go to a neuro-ophthalmologist and you know, my blood vessels grew back and my eyesight got better. The human body is amazing, though. I was like, because when I went back for the test, he’s like, yeah, your eyes are pretty much repaired themselves. So again, being in good shape when something like that happens does benefit me because my body did repair a lot of the issues I had.

    Bill 58:51

    What sort of work were you doing beforehand? And what are you doing now?

    Stacy Quinn 58:55

    So I worked in financial services for a global asset manager in Communications Group,, I decided I really like that job. But when I let myself recover, and then I took a step back and I said, I can’t keep up this pace. This isn’t going to be healthy for me in the long term.

    Stacy Quinn 59:17

    So I ended up going back to where I didn’t have to commute an hour a day to find a job a bit closer to home. in health care, and that’s where I’ve been so I love that job. But I knew for my own well-being it probably wasn’t something I could keep up with for the long term. So that was also a hard part of something that I had to determine was like, I have to leave this job. I can’t do an hour and 15-minute commute each way. Work these hours and sustain my life.

    Bill 59:47

    Yeah. Not enough downtime.

    Stacy Quinn 59:50

    No, not at all.

    Bill 59:52

    So what do you love to do now for downtime? What do you do?

    Stacy Quinn 59:55

    Well, it’s been a little hard in the past 14 months because of the pandemic. But you know, I really love I love working out. going to the gym is one of my favorite things to do. And I love shoes, a shoe shop. I’ve been a very nice collection that I have not been able to wear in 14 months. Actually. I have red heels that I put on to do this just because I was like I gotta wear them somewhere. Oh, I took them off actually they’re in the back.

    Stacy Quinn 59:58

    The girls the ladies watching me see them show us the red shoes. Wow, they are impressive.

    Stacy Quinn 1:00:42

    Yeah, and I can still I’m amazed 14 months into a pandemic. I can still wear these I can still rock them. So I was a little nervous like am I gonna be able to wear them so I can so I love my shoes and now that things are opening back up. I look forward to wearing them again. And then we talked about I spend a lot of my free time doing volunteer work.

    Bill 1:01:02

    Yeah. So are you addicted to shoes? Is that what it is that addiction?

    Stacy 1:01:07

    Well, I have 250 pairs. So yeah. I was like when they gave me the restrictions after my dissection I was like as long as you don’t say I can’t if you say I can’t you shop it’s over. But you know, I can I can get away with not going on a roller coaster.

    Bill 1:01:24

    Wow, I am sure there’s gonna be some people here going. I can relate to this woman. Oh my gosh. Which are your favorite? Is there a favorite? Can you have your favorite shoes?

    Stacy Quinn 1:01:37

    You know, I love all of them and all designers but I love it. I love a good stiletto like this. I like some height. So yeah, and I love red is one of my favorite colors.

    Bill 1:01:50

    Do you ever throw shoes out? Is there a pair of shoes that you’ve worn down completely that eventually had to get thrown out?

    Stacy Quinn 1:01:58

    Well, during lockdown when I cleaned out I got rid of about 10 pair that I was like and you know, and honestly, I didn’t even know I had them. It’s been so long. They were kind of dated. So yeah, I did I do cleanout.

    Bill 1:02:10

    Clean out to make space for the next period.

    Stacy 1:02:13

    Yeah, things are opening. The shoe stores are open again. I got to get out there, Bill.

    Bill 1:02:19

    Well, that’s if that’s your only advice. It sounds like it’s your own advice. Wow, that’s not too bad.

    Stacy Quinn 1:02:26

    Now, it’s fun. I enjoy I I missed that. Because I’ve been working from home for the past 14 months, I miss getting dressed up and going to work and seeing people so hopefully we’ll return to that soon.

    Bill 1:02:37

    That’s a really interesting part of recovery, I think that you said is that being out of the house dressed up feet, you know, feeling the air on your face, you know, the sun, and all that kind of stuff? Are you just as comfortable in your sweats or whatever comfy items of clothing that you wear as you are when you go out and about like was that something that you needed to do that really helped you?

    Bill 1:03:06

    Because I found that the more I spent time out, the more I put a bit of effort into showering and shaving and putting a nice, clean shirt on instead of T-shirt and sweat pants, you know, I felt better. And I know I looked in the mirror and kind of thought, okay, you know, you’re right. We’re doing all right. You know, I did these things. Was that something that was important for you?

    Stacy Quinn 1:03:31

    Oh, absolutely. I mean, I’m someone that’s known for like my dresses and my shoes and like I coordinate everything. So yeah, it just made me feel so much better to be I mean, that’s, that’s a bit of my personality. That’s who I am. And I you know, I think getting dressed up and like that also gives you just so much. I don’t know, I feel more confident when I know I feel comfortable. And I look good.

    Bill 1:03:54

    Yeah. Did you ever worry about your work? Potentially saying, we haven’t got a position for you? There’s no room for you here anymore. Now that you’ve had this thing happen to you?

    Stacy Quinn 1:04:09

    That’s so the job that I had at the time. They were extremely supportive. I will say that they were very good to me. So there No, but I was afraid about when I left getting another job knowing that my social media talks about my stroke like I post up on LinkedIn about what I do.

    This Is Who I Am


    Stacy Quinn 1:04:30
    That’s where I really hesitated when I got involved with volunteerism, but then I said, You know what, this is who I am. And if you don’t want me to work for you, then that’s fine because you know what I feel like I’ve done pretty well considering everything that I’ve been through. And I would hope that someone would look at that as a benefit to me and working for them. So I eventually said you know what, this is who I am and if you don’t like it, then don’t hire me.

    Bill 1:04:54

    Yeah, this is not my coaching, strokes survivors and the podcast is not my full-time gig yet, it’s hopefully going to be one day. But I definitely have had people tell me that they’ve Google searched me because I have a property maintenance business as well. So that’s been happening since 2005.

    Bill 1:05:18

    So it’s the way that I’ve made a living for all these years, and it’s the job I was doing when I became really unwell. And my clients will search for me on Google to confirm, you know, who is this guy? Is there any warrants out for his arrest? You know, why am I bringing this guy into my house? You know, so people have the power to do that now, right?

    Bill 1:05:40

    And they find these things, so some people, for some people, it’s been the reason to have me at the house. And for some people who, when I’ve applied for jobs, in the past, were all started to get back on my feet, they definitely used it against me, they definitely used it as a way to convince themselves that maybe we need to go with somebody else. Now, they didn’t say that to me. And I kind of understand, but now that I’m so public, and there’s so much of me online, there’s no way that I can take it down, like it’s there forever.

    Stacy Quinn 1:06:19

    You know, what, and that’s who you are. So they don’t like it like, then you wouldn’t want to be part of a group like an organization that. That’s how I feel.

    Bill 1:06:28

    Yeah, so that’s where it is at. So I’ve do find that a few people that I’ve spoken to have struggled to get convinced their bosses to allow them to come back to work in a different capacity and ease their way in and one lady in particular, was working in a hospital.

    Bill 1:06:48

    And of all places where you would have thought that they would support somebody being unwell to get back to work, you would have thought a hospital would be the place but apparently not.

    Stacy Quinn 1:07:00

    That’s crazy.

    Bill 1:07:02

    Yeah. So then she found another job in a similar role in another organization, I think it was another hospital. But the stigma, and the challenges that we all face, still are there. And the person who rejected this young lady to go back to her own job, her old job is going to be sick one day in the future, unfortunately.

    Bill 1:07:26

    And she’s gonna want somebody to step up for her and for somebody to help her out in her hour of need. And it’s not her fault, but we’re all so narrow-minded, that we can’t see beyond their own challenges and issues. And some of us just don’t understand that this person needs our help, we need to help them and then we might also need help in the future. And then what are we going to do when no one steps up for us?

    Stacy Quinn 1:08:00

    And that it’s, yeah, and I’m sure I mean, I would have no way of knowing if that really happened to me, right? If someone looked and said, Oh, I Google’s or you know, we’re not going to bring her in for an interview. Like, I have no idea of knowing if that even happens, but I’m okay with that. I’m proud of what I’ve accomplished. And the work that I’ve done so far, and I have a lot more to do. And if you don’t want me, that’s fine.

    Bill 1:08:20

    Yeah. hey, where can people find out more about you? I know we briefly spoke about your Insta, where else can they find out about you?

    Stacy Quinn 1:08:31

    Sure I have a website, wwwmystrokeofhope.com. I’m also on Instagram @mystrokeofhope. And I’m also on Twitter at my stroke of hope. So if you google mystrokeofhope hopefully you’ll find me.

    Bill 1:08:46

    I really appreciate you reaching out and connecting with me on Instagram. And I love the work that you’re doing. Thank you for everything that you do for the people in your community, and for making a difference. It’s really been fun to get to know you. I hope your recovery continues to go well, and I hope you continue to inspire lots of people.

    Stacy Quinn 1:09:09

    Oh, well, thank you so much. And Bill, thank you for everything that you do. You’re amazing and I will be first in line to get the book when it’s published.

    Bill 1:09:17

    Okay, I better get on to it then.

    Stacy 1:09:21

    All right. Thank you, Bill.

    Intro 1:09:24

    To discover how to heal your brain after a stroke go to recoveryafterstroke.com. 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 1:09:51

    All content on this website at any linked blog, podcast, or video material controlled by 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 1:10:14

    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 1:10:28

    Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:10:53

    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 the 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 The Signs Of Stroke – Stacy Quinn appeared first on Recovery After Stroke.

    1 hr 13 min
  • Riding 9000 kilometers for stroke awareness – Tommy Quick

    15 years after the stroke, 27-year-old Tommy Quick decided to ride more than 9000 kilometers or 5592 miles on an epic year-long journey to challenge himself and raise money for stroke research.

    Socials:

    www.the4points.org/
    www.instagram.com/4pointsaustralia/
    www.facebook.com/4PointsAustralia
    www.linkedin.com/company/the-4-points/
    www.youtube.com/channel/UCp56mnEGA3-MfzZPHA7oP8A

    Highlights:

    01:14 Introduction

    03:08 Stroke at the age of 12
    14:28 The ride to raise awareness
    25:15 Four Points Of Australia
    36:00 Funds for the stroke foundation
    46:45 Ride together

    Transcription:

    Tommy 0:00

    Then from there, we go up to Cape Byron to Byron Bay, and then on to Cape York, all in all it’ll be 9000 plus kilometers.

    Bill 0:15

    9000 kilometers. So it’s going to take you from the left of Australia, the west of Australia, right to the right side of Australia. And then it’s going to take you up to the top of Australia once you go down to the bottom of Australia. So man, that just looks really that doesn’t look like anyone should be doing that, under any circumstances.

    Bill 0:40

    I’m looking at that map and just trying to work out how massive it is. That’s like going from California, right down to the bottom of the US and then up to New York. That’s similar kind of route that you’re taking, isn’t it?

    Intro 1:01

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

    Introduction


    Bill 1:14
    Bill from recoveryafterstroke.com This is Episode 143. And my guest today is Tommy Quick. Tommy experienced a stroke aged 12 and has had to overcome a lot of adversity, as well as overcoming aphasia.

    Bill 1:28

    Now 15 years after the stroke, Tommy has decided to ride from the west coast of Australia to the east coast of Australia, and then up to the north coast, in the hope of raising a million dollars for the Stroke Foundation.

    Bill 1:41

    Tommy will ride more than 9000 kilometers or 5592 miles and is expecting that the ride will take more than a year. To find out more and to follow Tommy, you can go to www.the4points.org.

    Bill 2:00

    If you have enjoyed any of the recovery after stroke podcast interviews, please share your favorite episode on social media. Give the show a five-star review on iTunes. And if you’re watching on YouTube, please give the episode a thumbs up and subscribe to be notified of new interviews.

    Bill 2:19

    Your support with this will make it easier for other survivors to find the show and perhaps feel better about the situation they find themselves in. Thanks so much for listening, and now it’s on with the show.

    Bill 2:30

    Tommy Quick. Welcome to the podcast.

    Tommy 2:34

    Hello Bill how are you?

    Bill 2:36

    I’m well, mate thanks for being here. I really appreciate it man. I thought I’d get in touch with you because you’re about to do something crazy. You’re about to do a ride called 4 Points of Australia. And before we talk about that, can you tell me a little bit about what happened to you? And how you got to this stage of deciding that you’re going to ride a bike all over Australia.

    Tommy Quick had a stroke at the age of 12


    Tommy 3:08
    Where to start? That’s a good question. So I’ll go back to the beginning. I had a stroke when was 12 I just woke up one morning. I thought I had a headache, went to see my parents told my mom I have a headache and she went to get some aspirin or something like that.

    Tommy 3:50

    She came back she gave me some, and I drank some probably start (inaudible) like you know, any pills like that tastes like tastes just disgusting. And then five minutes later, I was unconscious and woke up two days later, from an induced coma.

    Bill 4:31

    How old were you?

    Tommy 4:33

    I was 12 I just started High School in 2006.

    Bill 4:48

    So all you remember is you had a headache. You went to mum, she gave you what most mums give to their kids when they say they got a headache like a Panadol which is a paracetamol tablet or Disprin, which is kind of something similar, that you dissolve in water tastes disgusting. And then the next thing you remember is waking up five weeks later out of an induced coma.

    Tommy 5:13

    Yeah, it was very scary, like, just before I was unconsious I was literally screaming my head off, and then I just shut down my body shut down unconscious. And that was probably the scariest point.

    Bill 5:56

    Tell me what caused that headache? What was the reason that that headache happened?

    Tommy 6:06

    The doctors said I had an AVM but I don’t know what caused it, they said it was the size of a golf ball.

    Bill 6:40

    So you had an AVM, it bled, and it caused a blood mass in your head, which was the size of a golf ball man that’s similar to me. I’m familiar, very familiar with that process. It happened to me when I was 37.

    Bill 6:47

    You were 12. And when you woke up five weeks later, what were the challenges that you now had? Because I had issues with my ability to walk, memory, the whole lot. what kind of challenges did you face after you woke up?

    Tommy 7:17

    One believing that it was real. Like, honestly, I thought it was in a video game. Like you press that button, everything goes back to normal. That was probably the first part. Like answering the question why did it happen today? Which is similar to video game?

    Tommy 7:51

    Like why did it happen to me? What reason was that I should have this stroke? And then I had to re-learn everything from walking to talking and talking was the most affected area of the brain apparently.

    Tommy 8:24

    I remember I wanted to talk so that, and I was also very negative. I would say no to everything as well, I will say was no. say well, and we’ll talk tracheotomy. David Burns head up. I got the baby pretty much.

    Bill 9:21

    You have to basically start from scratch and learn how to walk talk. Move your head sit up the works.

    Tommy 9:28

    Yep, the works. Is that similar to you?

    Bill 9:33

    No, I didn’t have that such a dramatic issue with why talking. Walking was an issue. I had to learn how to walk again and use my left arm that got better relatively quickly. I still experienced a numbness and usual left-sided challenges but I don’t have any spasticity or anything like that which is visible, which causes my legs, my leg to cramp up, which stops me from walking.

    Bill 10:06

    I don’t have foot drop, my left arm is not closed over or anything like that it all functions but I do have numbness, altered sensation, I experience temperature differently on the left side. And when I get tired, the left side really struggles. But nobody can see it. It’s not visible to other people either.

    Bill 10:32

    And it’s a bit of an invisible issue that I have. But I had surgery as well to remove the faulty blood vessel, the AVM to remove that. And I see that you had surgery as well. Your surgery was when you were 12 I imagine after you collapsed, they took you straight into surgery and you woke up five weeks later in a hospital bed with your head stitched up and all sorts of things.

    Tommy 11:02

    So according to my dad there was quite some delay on the prognosis. They didn’t know what it was. They spent 8 to 11 hours to work it out.

    Bill 11:48

    Yeah, that’s right. So how hard was it going back to school? How long did it take you to go back to school?

    Tommy 11:56

    So it was in April 6th, I spent four months in the hospital. And on the 1st of September, I went back to home. So I spent four months in the hospital just concentrate on rehab and stuff. And then I went back to school and I did one class in the last term of school.

    Bill 13:09

    So you were almost out of school for the entire school year.

    Tommy 13:16

    But I just picked up you the next year. Interesting my school is really really good at because when I was in the hospital every Wednesday my home group teacher she brought kids in the hospital to see me and talk to me and just chat as far as just like 20 minutes and 10 minutes, which is really, really good. So like I wasn’t as alone, as I probably could’ve been.

    Bill 14:17

    You were 12 at a time. How old are you now?

    Tommy 14:22

    27. I have to think about that.

    The Ride To Raise Awareness


    Bill 14:31
    You’ve gone through this process and you’ve lived with the conditions and the situation that you were thrown into a 12 for 15 years now right? So it’s been a decent journey. And how long ago did you decide that you’re going to start doing something to raise awareness and support the stroke community with the ride that you’re planning and we’ll talk about the ride in a minute, but when did you decide to do something about this situation?

    Tommy 15:13

    Probably starts a fair bit back. It’s like a story. So some reason I can’t remember I started playing table tennis. And like, just in school. I was terrible back then. And I guess my love for sport, and school was one of the main things in my life before.

    Tommy 15:59

    I started playing table tanis at night and my lost for the cricket was devastating. Playing table tennis gave me a little bit of a drive. And then kept going, it gained a bit more drive, I suppose.

    Tommy 16:28

    And then everything’s away on. The drs camp involves snowboarding. I’ve never done the love of the door. Try to remember a guy called Dan j. m. is away calm with a weekend-long camp. He was I asked him. Were there any more terms? Any advising? There were can capacity and that and fun from the eye? This is Jim. I don’t oversee I transition from a participant into a staff member. Because you got to say, but I know. I could send that better. And some I was one of the calves i think is is k kids.

    Tommy 18:00

    And the and Isn’t that how many? And I overheard a conversation about decoder and so I interrupted that conversation. And I said, I’m interested in the sound decoder because (inaudible).

    Bill 18:33

    Yeah. trail or track. What is the kind of trail or

    Tommy 18:40

    kick out a championship?

    Bill 18:42

    Yeah. And it’s something that a lot of Aussies do, we go to Kota trail, which is in which countries that is

    Tommy 18:53

    hopping making it

    Bill 18:54

    it’s in Papua New Guinea and we walk the trail that the Australian soldiers would have walked when they were prisoners of war. With in the Second World War, under the rule of Japan, I believe it was the prisoners of war were forced to work and they were working in this jungle situation in the area called Kokoda. And what Aziz do to commemorate that is they go to Papua New Guinea and they do this track. So, did you end up doing the track or is that something that you were thinking of doing?

    Tommy 19:44

    So, is it kind of a thought process like is the initiate initial stages and like I as an information night in March Two days, four days, which I went to school and yesterday and came back and walk into my house and told my parents aren’t doing. And then like, two months later, my dad jumped on board and it became a my dad. While Tim is rich. So doing

    Bill 20:42

    it, it says here Sorry to interrupt that the Kokoda trail takes between four and 12 days to walk. Yeah.

    Tommy 20:52

    How long did it take you? So it was a joke, my job is to learn and the thoughts on this screw. I taste so we went ahead. And the plan was then to get a job to us. On the 10th day brevity I paid them off

    Bill 21:32

    It’s actually 96 kilometers of land. It’s a decent 60 kilometers in a straight line, but 96 kilometers over hills and turns and bends and kind of stuff. So it’s a very that’s a very decent distance. 60 miles is a pretty decent distance for anyone to do. And you managed to get through the entire 12 days.

    Tommy 22:07

    Yeah. I like blood, please. Poison funfest. Like, is Yeah, I got that up to this day. And that is there was some low points notice and my point that

    Bill 22:37

    The low point, your body aches and pains, blisters, your feet, being in all sorts of terrible conditions. But you got to the end of it. Is that what got you thinking about? I’m going to now do something of my own? Is that how you started to think about your four points of Australia trip, which basically what you mean by the four points is that you’re riding your bike to the most extreme. four points of Australia. So right to the end, is that north, south, east or west? Like which direction?

    Tommy 23:15

    So starting in the West, at the point where which is 43 cases, and then it’s that Nani case of tarnation and, and then it’s smooth ride. And the very first step point towards things from your motions from like, obviously, will go as far as the bike will allow me to go. Yeah, we’ll clarify that is the point I can get through on my walk out to the actual this place or not. Right, that’s an added bonus if I feel up to it.

    Intro 24:12

    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 24:29

    Doctors will explain things but obviously you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery.

    Intro 24:42

    If you’re finding yourself in that situation. Stop worrying and head to recovery after stroke comm where you can download a guide that will help you get called the seven questions to ask your doctor about your stroke.

    Intro 24:56

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

    Four Points Of Australia


    Tommy 25:15
    Then from there we go up to Cape Byron to Byron Bay, and then on to Cape York, all in all it’ll be 9000 plus kilometers.

    Bill 25:34

    443 hours according to the map that you’ve got on your website, it’s going to take you from the left of Australia, the west of Australia, right to the right side of Australia. And then it’s going to take you up to the top of Australia once you go down to the bottom of Australia.

    Bill 25:53

    So man, that just looks really that doesn’t look like anyone should be doing that. Under any circumstances. I’m looking at that map and just trying to work out how massive it is. That’s like going from California, right down to the bottom of the US and then up to New York. That’s similar kind of route that you’re taking, isn’t it?

    Tommy 26:20

    Yeah yeah I’m not good at US maths I’ve never been to the US

    Bill 26:31

    Doesn’t sound like you’re good at thinking about anything man. Who, in the right mind, who in their right mind comes up with this thing and says that’s a good idea. Obviously, you haven’t thought about it at all.

    Tommy 26:45

    I’ve thought about it for quite some time like um like i was it was actually a mate of mine so i got my recovery tracks in late night late 2018. um through ndis um so like not in the is slow to recover and um i wrote it like after doing kokoda i was like what am i going to do like i didn’t really have any drive to do the physical.

    Tommy 27:31

    And I became a personal trainer up to that point inflow. Dr. Like I said, and I will do my best to make up for my coffee to that same night. And he saw me on my bike outside like, Why Why don’t you why around? Right around the Shire? Because I yeah, cool. Do that. And then I, we have obviously refined it to the most extreme point just because some data before.

    Bill 28:27

    That’s mental that is mental. It is. For the people listening or overseas. It’s 5523 miles 1890 kilometers. It’s so so far to go. And I’ve done some long drives from Melbourne, where I live near the bottom of Australia, to the north, you know, along the freeway to Sydney and then to Byron Bay, which is at Cape Byron men that takes in a car in a car that takes 20 hours 22 hours. So how many days do you expect that you will be on this journey?

    Tommy 29:16

    So we set aside a year to do it in. So, but really, I like I’ve mapped it out on that journey. And the way I’ve calculated it is by distance. So realistically, in the day, 4 and a half months, to get from state point two lessons from that four days and then another four hours, I want to get out to Catch your bike. We might have changed the word a little bit. It’s still like to buy, I suppose. Like, realistically It will take about 10 minutes. That’s my thought on it. But who knows it might take a year I might do it in like, two days.

    Bill 30:33

    Yeah. Good on you, man. No way. You’re not doing it in two days. You’re not doing it in two months. You might do it. Hopefully, in a year like you said, I really do. I hope you’ve got a plan to look after your body, your joints, your body, your fate, your shoes, your hair, everything I hope you’ve got people that are going to help you out.

    Tommy 30:56

    So all my bad The good thing is I’m writing Eric coming back. Yeah, so the feedforward kind of thing. So they’re a little bit out of the normal bikes I like to think because it tastes a lot more like you’ve got no momentum going up here and you’ve got more resistance there no I’m sorry, that can take you a little bit longer.

    Tommy 31:43

    And I’ve got a support crew which are my parents man mainly, but the thing is that anyone can come along the journey and they can either ride with me or they can come just be part of the support or help me out. And that’s to promote social inclusion. I just being true mates and helping a mate out.

    Bill 32:21

    And it’ll be bloody boring. Doing a bike ride on your own wouldn’t it?

    Tommy 32:29

    I cuz it’s the lay down bike it goes slower. So like Well, my take someone like john said 6070 Ks all the 345 day 45k Mark every day, every two hours. So, if I go two hours, that’ll be about the case. Okay. But as an all bike there’ll be a 60k

    Bill 33:11

    Okay. So, how many kilometers Do you plan on riding every week or every day?

    Tommy 33:17

    So, like burns state went to the end of the now. So like Miss June or holy cow we averaged about 74 Ks day, three days or one day rest to advance every three days rest and recover. And like in that time I’ll be talking giving hopefully giving talks to anyone or anyone listening.

    Tommy 34:01

    That might experience Yeah, if you can show them how important it is to raise awareness better. And then after us run the elbow. It decreases like by 10 to 20 days. So I will be back. Okay today. Not too bad. So 550 K’s will take like three four to five hours depending how many I cover.

    Bill 34:54

    Depending on the terrain fair enough. So you are aiming to raise a million dollars For the Stroke Foundation, yeah, surely in there, maybe there’s a few bucks there available for you to buy a few beers, new bike tires, something like that.

    Tommy 35:13

    Yeah, well, we’ve got a Stroke Foundation, a million dollars raised towards research and stuff. And then we want to get sponsorship to count is about patients. However, local businesses survive poor money, expand by tires, cars, temperatures, and stuff. And then whatever the ages. foundation afterward.

    Tommy Quick Raising Funds for the stroke foundation


    Bill 36:00
    Okay, so looking to raise a million dollars, you’re looking for support to get people to support the bike, spare parts, tires, food, accommodation, and you’re looking for sponsors, you’re looking for people to basically just get on board at any level that they can just to help you cover the costs.

    Bill 36:21

    And then anything left over from funding, your bike ride, bike, tires, chains, all that kind of stuff, anything left over then gets also supported, folded over and provided to the Stroke Foundation.

    Bill 36:36

    And that’s the Stroke Foundation in Australia, basically, the Stroke Foundation is the main body for stroke research and prevention in Australia. And that are not for profit organization.

    Bill 36:53

    And they are looking for support as well from donations from the public. And they also looking for support from the government where they raise a little bit of money, and they provide services to stroke survivors in Australia. So it’s a really good cause. And it looks like you’re going to achieve a lot and do a lot.

    Bill 37:18

    And then you’re going to make a massive difference to people and their lives. And is this going to make a big difference to your life? how’s it gonna make you feel a bit about the whole situation about everything that you’ve been through, after you’ve completed the ride?

    Tommy 37:42

    It will make a huge difference to me because, when I started the campaign and as I got further along, like, a lot of people ask me why? why I’m doing it? Obviously, to raise awareness, obviously the social inclusion, mainly towards disability, but could we people’s mentality. And all that. But I wanna prove to myself that I can do it, that I’m someone.

    Bill 38:28

    Sounds like it’s a bit of a personal challenge to see what you’re capable of.

    Tommy 38:33

    Yeah, what I was trying to say. And to prove to other people that they can do anything they set their mind to. So it’s on that personal level as well as even I can do it why can’t you do it?

    Bill 39:01

    If you can do it, why can’t I do it? Let me tell you, man, I don’t know. If you can do it. I really, I want to make sure you do I want to make sure you get to the end. That’s why I want to support you in this way. Raise a little bit of awareness, bring people to your page.

    Bill 39:16

    The4points.org is the website. They can donate there, they can follow your journey there. They can keep up to date with your diary and where we’re at. And on Instagram, they can go to @4pointsaustralia they can follow you there.

    Bill 39:39

    I’ll have all the links on the show notes so people can go and find it and come and see you. But let me tell you something. If you do 9000 kilometers. What did we say that was in miles 5523 miles. If you spend a year doing that ride and achieving that goal and raising money for the Stroke Foundation, a million dollars or less or even more.

    Bill 40:04

    You’re not going to make me feel any better about myself, man, you gotta make me feel like an absolute wimp. Like somebody who needs to step up and needs to do more than what I’m doing. That’s what you got to make me feel like you’re gonna make me feel like I need to get off my ass and be more motivated.

    Tommy 40:27

    That’ll be awesome. I’ll be recording all that and really. So that those times in your life where you’re challenged and that’s where you’ve got to overcome it that they kind of oh shoot so don’t worry you guys will see me in my highs and my lows i’m going to film it.

    Bill 40:56

    Looking forward to following your journey. And I wish you well. Now we are recording this podcast episode in May of 2021. And according to the countdown timer on your website, it says you’ve got 90 days, 11 hours and 47 minutes before you start your ride.

    Tommy 41:19

    I just count days. Not so much the hours is on what is that? Like one o’clock in the morning? To get a point? Oh, my praise? Na by the very least for the studying time. Yeah.

    Bill 41:48

    All right, 90 days then. So in around three months time, you’re going to be on the road. How much training are you doing?

    Tommy 41:57

    I’m going to Pete is like when we go just to drive from Melbourne. to state Why not? And is like for both as case and I don’t want to lose physical fitness. So we could do it in five days. We have chosen to do is have practice rounds. Where I will go I my parents are driving. And oh right, like 60 days a day until we get over to the

    Bill 43:01

    So part of getting to stede point which is 4000 kilometers away from Melbourne is you’re going to include some of that time in the training. Yeah, that’s a great idea.

    Tommy 43:15

    Right now i’m training for mainly validation which for the past two weeks have been difficult i could say um because like so i’m just trying to think of the best way to explain it so like one hour if you break it down one hour of heels in the now i’ll get maybe say 190 meters of elevation done.

    Tommy 43:57

    Like that that’s just going in a loop so going downhill and now up downhill and up and down the whole hour and so like this week well the week just gone I did 500 and 508 meters of elevation 33 k’s of one hill going up and down that’s really boring um and um that took three hours and like after that i was absolutely smoked like next day i was so sore and stuff um because like it’s so much stress on the body.

    Tommy 44:59

    If it’s not if it’s a normal ride like i’m riding from here to about it might be 500 meters of elevation but it’s not consistently going down and up yeah it’s a bit a bit easier um and so for the past two well the past three weeks i’ve been finally here 1700 minutes of elevation all right in one week but i haven’t been able to hit that target which has been very annoying.

    Tommy 45:46

    But like I said that 500 salvation last week on a Wednesday that was like i solid session done so like i try and take the positives out of that yeah so this week what this week will look like is two five hundred men efforts and like one thousand four hundred minutes of salvation in total so i’m just like kind of similar less but at the same time it’s a bit more effort required.

    Bill 46:36

    Yeah. Wow.

    Tommy 46:37

    Does that make sense?

    Bill 46:38

    It does, man. It does. And I’m glad to see you doing it and not me.

    Ride together with Tommy Quick

    Tommy 46:45

    Are you sure you don’t want to jump on to a bit of a journey?

    Bill 46:48

    I do. I actually do. I would love to catch you on your Melbourne to Wilson’s prom journey. Maybe I can. If I follow you, and I know where you’re going to be. And when you’re going to be there, I might be able to jump on and do a little bit of that.

    Tommy 47:06

    First question. Do you have a bike?

    Bill 47:09

    I do. I have a bike. I have an E bike because it’s too hard for me to ride a regular bike. I have an E bike that’s going to help me get up those hills and all that kind of stuff. So that’ll be good. Yeah, if you’re in Melbourne at a certain time, and I know you’re you’re coming I can plan for it. And I can jump on and do maybe a couple of days worth of riding with you.

    Tommy 47:35

    That would actually be fantastic. I think that early November, late October from off the top my head.

    Bill 47:50

    Perfect weather for it as well.

    Tommy 47:51

    Yeah, not too cold just right.

    Bill 47:58

    Man, I really appreciate you coming on the podcast. Congratulations on your massive tour of Australia. I hope you achieve your goals and raise money and all the things that you want to achieve. I hope you learn a lot from it and I know it’s going to help a lot of people. So Tommy, I really appreciate it man, what you’re doing for the community. And I just wish you well and I thank you for being on the podcast.

    Tommy 48:26

    Thank you for having me.

    Intro 48:32

    Discover how to heal your brain after stroke go to recovery after stroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.

    Intro 48:48

    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 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 49:11

    The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives.

    Intro 49:27

    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 49:43

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

    Intro 50:00

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    The post Riding 9000 kilometers for stroke awareness – Tommy Quick appeared first on Recovery After Stroke.

    53 min

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