Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • How To Manage Setbacks After Stroke – Bill Gasiamis

    7 Tips to help manage setbacks after stroke by Bill Gasiamis will give you some ideas that may help you navigate stroke setbacks

    Socials:

    www.recoveryafterstroke.com
    www.instagram.com/recoveryafterstroke

    Highlights:

    00:53 Introduction

    01:29 Stroke recovery setbacks
    04:09 Tip 1. Rest
    07:11 Tip 2. Reassess
    09:46 Planning ahead
    10:27 Tip 3. Change something
    15:30 Changing your diet
    17:20 Tip 4. Get out of your head
    20:33 Tip 5. Ask for help
    26:47 Tip 6. Wait it out
    30:17 Tip 7. Practice gratitude

    Transcription:

    Bill 0:00

    My week. So for example, if I’ve got somewhere to go on a Saturday night, and then I make sure that I’m not going to go out on Friday night, and I make sure I don’t do anything too massive on Thursday night because if I do go out both those nights that by the time I get to Saturday, I will have overexerted myself in my brain.

    Bill 0:19

    And if I go out on Saturday, it might be a really terrible Sunday. So I want to avoid doing that. So I try to reassess often about what I need to do to get through my week to get to the event that I want to be at and be feeling the best and feeling great about being there and enjoying myself while I’m there.

    Intro 0:40

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

    Introduction


    Bill 0:53
    Bill Gasiamis here again for recoveryafterstroke.com This is Episode 132. And today’s episode is a solo episode. Today, I wanted to bring to you my seven tips to navigate setbacks while on the road to recovery after a stroke.

    Bill 1:10

    So like me, if you’ve probably had setbacks during your stroke recovery and, I believe that you’ll find these tips helpful. It’s taken me three days to get to the point where I can actually record this podcast episode because for the last three days, I’ve had a massive headache.

    Stroke recovery setbacks

    Bill 1:29

    And I haven’t been able to sit in front of the computer properly, especially in front of bright blue computer lights. And that is one of the things that I consider to be a setback. And I think it’s really important to have this discussion because people can take setbacks in a bad way.

    Bill 1:49

    And I used to, but I want to talk about how I started to change the way that I looked at setbacks and change the way that I went about doing things so that I could recover and overcome them sooner.

    Bill 2:02

    Because I’m nine years post-stroke, and still the setbacks come that don’t come as dramatic as they used to, but they still come. Now just before we get started, if you have enjoyed the recovery after stroke podcast, I wonder if you would do me a favor and go ahead and give the show a five-star review on the podcast platform that you listen to your favorite shows on.

    Bill 2:28

    Now, this will make a huge difference to the ranking of the show. And we’ll make it easier for other stroke survivors to find and hopefully, it will help them feel better about their stroke as well.

    Bill 2:39

    Now if you have a favorite episode of the show, go ahead and share it on your social medias. And like it on YouTube, leave a comment and let me know which episode it was and how it helped you and why it resonated with you.

    Bill 2:54

    Now also, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own computer.

    Bill 3:06

    I too am a three-time stroke survivor I’ve built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 3:16

    Support packages give you access to a variety of tools 24-hours a day, seven days a week so that you can also work on other areas of stroke recovery, like adjusting to your new normal, even managing the grief that you may be feeling from your former self.

    Bill 3:30

    With tailored support available from $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you, you will get the first seven days free as well as a 30-day money-back guarantee no questions asked.

    Bill 3:49

    As a bonus, you will get to face to face zoom support calls with myself to take your recovery to the next level. So go to recoveryafterstroke.com/momentum to sign up, it won’t cost you anything for the first seven days. And you will get a full refund if you are not happy after 30 days.

    How To Manage Setbacks After Stroke Tip 1. Rest


    Bill 4:09
    You have nothing to lose and everything to gain. And now it’s on with the show. All right. So here is tip number one. And this is the only tip that it’s my go-to tip. It’s the one that I do the most. And it’s the one that I’ve been doing the last three days trying to overcome this setback called a headache, a constant headache, and that is rest.

    Bill 4:30

    And the way I go about resting is to actually do less and to sleep more and try and go to bed a little bit earlier. Now, doing less for me is a really important thing because I’m a high achiever and I can’t normally sit still. So my idea of I’ve got nothing to do today is a to-do list of about 10 or 15 steps.

    Bill 4:57

    So in order for me to get to do less, I’ve got to really put the to-do list aside and not worry about what has to be done today and do that tomorrow. I mean, there’s nothing urgent that’s on those lists. And as a result of that, I don’t really need to worry about doing any of those things urgently.

    Bill 5:22

    I can put them off until tomorrow. And what’s most important about that is that I’ve stopped feeling guilty about putting things off and not doing the things that I had in my mind, to do on a particular day, and feeling bad about the fact that I haven’t done it and feeling like I’m not being productive.

    Bill 5:44

    It’s really okay. If something is urgent like you need to cook, and you’re so tired that you can’t even get up to cook. But because you’re feeling guilty about other things not being done, for example, around the house, you might get to that point where you do all those other things that you feel guilty about. And by the time you get to the end of the day where you need to cook, you haven’t got enough energy to do it.

    Bill 6:07

    So what I say is, the most important thing to me, for example, is I would prefer to cook a lovely meal at the end of the day. Which means if I have to do nothing all day, to get to the point where I am comfortable to be able to go buy a few ingredients and bring them back and make a nice meal for me and the family, I prefer to do that.

    Bill 6:25

    So that’s my to do list, it’s definitely different than what it used to be I do a lot less. And I spend as much time on the couch as I need to or I sleep longer and I stay in bed for later, when I wake up in the morning, now I might be awake, and I might not be doing much, and it might feel for some of you like that’s boring.

    Bill 6:50

    But for me, I just put on a little meditation track and allow myself to stay in bed a little longer, it’s a great way to start the day, it really eases you into starting your day. And it does go about reducing stress, and then also just feeling a little bit better about getting out of bed. And it’s just a tip that works for me.

    How To Manage Setbacks After Stroke Tip 2. Reassess

    Bill 7:11

    So the other thing that I do so tip number two is to reassess to take some time, and reassess the things that are working for me and the things that are not working for me. And what I do is then work out what those things are and do less of what’s not working for me and do more of what is working for me.

    Bill 7:33

    So in the last three days, what was working for me was spending more time in bed. And having a conversation though with the people that needed to know that I was doing this. So that they wouldn’t think that there was something else wrong, more dramatic, also that they wouldn’t think that I’m just being lazy or feeling down or depressed or something.

    Bill 7:56

    So first to have a conversation about it and then spend a little more time in bed. That means you wake up a little bit later, you go to bed a little bit earlier. And even in the middle of the day, if you need to do something like go to sleep for a little bit longer, in the middle of the day, then do that as well.

    Bill 8:14

    So I reassessed that what was going to be important for me to help my headache go away will sleep more, what was going to be less important for me was to spend more time on the computer.

    Bill 8:24

    So I put off not doing this work for three days. The other thing that’s really important for me during my reassessment process was that I worked out that going out and about and being in places that were full of noise and a lot of overwhelming things that are going to overwhelm my brain is not important.

    Bill 8:44

    And I made the assessment that it was going to be okay if I did hardly nothing over the last few days over the weekend and yesterday, which was Monday. And one of the habits that I’ve been able to find myself in lately is to reassess before I get to this point and hit a wall for three days.

    Bill 9:07

    Now, sometimes these fatigue situations or these headaches situations, they just come and I don’t notice that they’re around the corner, and therefore I don’t change my behavior and I don’t reassess. And as a result of that they catch me a little bit unaware. But I found myself to be able to get out of a lot of these long term setbacks by reassessing often and making decisions about what’s going to happen in three days from earlier on.

    Planning ahead

    Bill 9:46

    So I start planning my week so for example, if I’ve got somewhere to go on a Saturday night, and then I make sure that I’m not going to go out on Friday night and I make sure I don’t do anything too massive on Thursday night, because if I do go out both those nights that by the time I get to Saturday, I will have overexerted myself in my brain.

    Bill 10:07

    And if I go out on Saturday, it might be a really terrible Sunday. So I want to avoid doing that. So I try to reassess often about what I need to do to get through my week to get to the event that I want to be at and be feeling the best and feeling great about being there and enjoying myself while I’m there.

    How To Manage Setbacks After Stroke Tip 3. Change something

    Bill 10:27

    So tip number three is to change something. Henry Ford once said, If you always do what you’ve always done, you’ll always get what you always got. And this was very difficult for me to grasp that concept nine years ago before stroke, I used to have the definition of insanity, which is doing the same thing and expect different results.

    Bill 10:51

    And it used to make my life really, really difficult. And I didn’t know how to fix the problem, because I just had only one way of attacking a problem or solving a problem. And I didn’t look for other opportunities to solve problems and overcome problems because I had no experience I didn’t know who to turn to or where to go.

    Bill 11:16

    So it’s really important to get to that point where you realize that if something is not working for you, you need to change something. If you’re constantly getting into the same setback over and over again, he needs to stop doing what you’re doing, and you need to make a change.

    Bill 11:38

    And one of the main things that I did to make a change was I change the people that I used to hang around the people that were not good for me energetically. So going back to the fatigue that I was feeling. If I was feeling fatigued, and really rundown, and I had a terrible couple of days, the last thing I wanted to do was hang around with those people who I would call the drainers.

    Intro 12:00

    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’ll make matters worse?

    Intro 12:18

    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 12:40

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

    Bill 13:03

    And as a result of that I saved the energy for me rather than other people who weren’t really serving me well by being with me. So I changed the people I hang around with I didn’t make them my enemies and I didn’t make them feel bad about the situation.

    Bill 13:21

    I just chose the times when I would hang out with those people. And I really made a point to say, Look, I’m not feeling quite well right now. So would it be okay if we just take a pass. And these are generally good people, they just have different needs when you’re around them.

    Bill 13:38

    And I’m not always up being able to serve the needs of those people. Sometimes I need to serve my own needs. The other thing I would do is change my routine. So sometimes I’m really good in the mornings. And sometimes I’m really good in the evenings.

    Bill 13:58

    And it’s really hard to tell, but the majority of the time, I’m good in the morning. So I’m recording this podcast episode in the morning. And I’m feeling very productive. And I’ve done a lot today. And I’ll probably be finished doing my work at about one o’clock in the afternoon and that’s it. I’m done for the rest of the day.

    Bill 14:17

    But last week, I woke up really badly a few times. And as a result of that, I couldn’t get through the morning routine. I couldn’t do the things that I was doing in the morning and I needed to get through lunchtime in the afternoon to start feeling a little bit better.

    Bill 14:34

    So I’m not sure call it I took a long time to wake up. But it took quite a while for me to get to that point on this particular few days. So I changed my routine around. I did nothing in the morning. I eased into my day and then after dinner when we had some lovely food to eat.

    Bill 14:53

    I excused myself and I went into my room and I did the work that I needed to do for about two or three hours productively. And then I settled into the end of my day and went to bed.

    Bill 15:05

    So it was really helpful for me to change my routine and change the type of work that I was doing. And when I was doing it, so that I was getting really good results, or I was being adaptive so that I could get results, where perhaps previously, I would do work and push through those hard hours.

    Changing your diet


    Bill 15:30
    And the quality of work wouldn’t be that good, and it will take a lot longer, so it’d be a little bit more energy draining. I also changed what I eat. Now, this is a really important one, if you change what you eat, you’ll notice a massive difference. You know, sometimes you eat some foods, and those foods will give you a food coma.

    Bill 15:52

    Usually the high carb foods. And usually, if I eat foods at the wrong time, or the right wrong kind of food. But I’ve got some really important work to do on a podcast episode, for example, and I’m going to need to sit in front of the computer, if I have a really high carb meal.

    Bill 16:11

    But the time I get to sit down on my computer and do that work, I’ll be falling asleep during the recording of the podcast episode, and it will make it really difficult for me to focus and concentrate on what I need to do. Now, I would recommend doing a lower carb diet most days when you’re recovering from a brain injury.

    Bill 16:33

    But that being said, it’s okay from time to time to have carbs, I really still enjoy pasta. And from time to time, very rarely, I do have a bowl of pasta, but I know what’s going to happen after I eat it. So I make sure that I’m going to have it at a time where I don’t have to worry about getting any work done or doing something that’s important.

    Bill 16:54

    So there’s some of those things that I would change to get me through those times when I’m feeling a setback. Now, I’m talking about my setback of not feeling well for the last few days from a headache, but your setback might be more dramatic. So hopefully you can take some of these tips and change them and evolve them to suit you and apply them in the way that you need them to be applied.

    How To Manage Setbacks After Stroke Tip 4. Get out of your head


    Bill 17:20
    Now, tip number four. One of the things that really helps me to overcome setbacks is to stop having that head conversation with myself about all the things that are going wrong with their setbacks and all the things that they’re stopping me to do and all the problems and dramas that they are causing me.

    Bill 17:41

    And getting out of my head really helps for me to stop having those cyclical conversations that get you nowhere other than into a crappy loop of feeling annoyed and upset and sorry for yourself. So the first thing that helps me get out of my head is to take a few deep breaths.

    Bill 18:02

    And it’s well researched. And it’s well reported on that breathing differently can really change your mood and your mindset. And it can help you navigate those moments where you’re feeling overwhelmed by a setback that you’ve had. Breathing deeply helps you to connect to your heart and your heart is where what’s really important lies.

    Bill 18:33

    It’s where you go to to actually get answers about what’s really important to you. And if you haven’t had the pleasure to connect with your heart recently, I ask you simply to just put your hand on your heart. Take a few deep breaths.

    Bill 19:01

    And as you breathe, just connect to your heart and ask your heart. What’s most important to it right now. And perhaps you’re sitting somewhere. And you can do this and contemplate and if you’re not sitting somewhere where you can do this and contemplate right now.

    Bill 19:18

    If you happen to be listening to this while you’re driving, do not do this right now. But when you get to a place where you can sit comfortably and you can be safe and you can contemplate on what’s important to your heart. Close your eyes. Take those deep breaths, put your hand on your heart and ask your heart what’s important to it right now.

    Bill 19:37

    And if you sit quietly, you’ll start to notice that something will pop up and it will tell you what the most important thing to you is right now. And if you take action on that and do what your heart desires, you’ll start to feel like this setback is not such a big deal and it will help you reduce stress, and it will help you restore your balance, and it will help you navigate the speed hump or navigate the wave if you’re in the bottom part of a wave, it will help you navigate it.

    Bill 20:13

    And just be patient so that you can wait for your trajectory to change. So that’s a really important thing. Give yourself the opportunity to connect to your heart and ask it what’s really important to it right now.

    How To Manage Setbacks After Stroke Tip 5. Ask for help


    Bill 20:33
    Tip number five is ask for help. In my times of setbacks, I really did go out of my way to do this, I did ask for help. And at the height of my challenges with stroke, I connected with a counselor, I connected with multiple coaches, I went out of my way to see other doctors and get second opinions.

    Bill 20:59

    And most importantly, I didn’t seek help from people that are qualified to help me. So what does that mean? That means that in the past, I used to find myself getting frustrated by going to people that didn’t know how to help me or how to answer my questions.

    Bill 21:16

    And that would really annoy me, it would really make me feel even worse about my situation. And it felt like my situation was even more hopeless. And the reason being is because I was just going to the wrong person to ask for help, and they don’t know how to help me.

    Bill 21:32

    For example, if I’m going to somebody who’s never had a stroke and ask them about my stroke, and what I can do to help myself get out of a setback, they’re not going to know how to answer the question. And it’s unfair for me to expect them to have an answer, or make me feel better.

    Bill 21:47

    And just because we’re out for a tea or a coffee, and we happen to do a catch up, it doesn’t mean that I want to be putting that person in a position where they’re feeling like they don’t know how to support me, or how to help me and they’re feeling sorry for me or finding it difficult for me.

    Bill 22:05

    What I would rather do is go out with my friends and family and just do friends and family type of stuff. That can be slightly related to stroke, but I’m not about seeking help from them.

    Bill 22:18

    And you might seek help differently for me, but what I used to do was just ask them for advice on a situation. And it might have been something silly, like, you know, what would you do if you had a headache after your stroke, and they wouldn’t know how to help me they wouldn’t know what to answer, they’ll say go to the hospital, go to the doctor that would get really concerned.

    Bill 22:36

    And then I would transfer my stress and my anxiety onto that person. And then that interaction wasn’t a really good interaction. So when I was hanging out with mum and dad, and my brother and family and friends, I tried to really minimize my conversations about the stroke, to some very basic answers.

    Bill 22:55

    And when people asked me, how you coming along, I’d say really good, thank you, or I’ve had a bit of a rough week, but I’m getting better. And I would just generalized so that I wouldn’t get into a conversation that turned into a discussion about how I was needing help, and I was needing help from them, and I was holding out for this help from them, and I wasn’t getting that help.

    Bill 23:22

    So I outsourced the help that I needed to a coach and a counselor now a coach helped me overcome things that I had never done before and learn how to do things that I’d never done before. For example, if I wanted to go back to the gym and learn how to lift weights with an arm, that wasn’t able to really hold the barbells properly, or the dumbbells properly.

    Bill 23:47

    I would get a coach to have them help me, guide me through that process. So that I could once again feel comfortable with using my arm. And I wouldn’t be afraid that I was going to drop the weight. I also remember being coached to run again. And I got somebody to stand with a recording device with a phone and record me running so that I could see what it was like when I was running.

    Bill 24:14

    And then I asked him to run with me or to observe me and tell me what I was doing differently with my foot because my foot wasn’t working properly. And then tell me how to slightly adjust it on my run so that I can get a really good result from running and feel better about running.

    Bill 24:35

    Not that I ever ran again and did a marathon or anything like that. But just so that I could get across the road if a car was coming in, I needed to get to a safe part of the footpath or the sidewalk as my friends in the United States would say. So I would get a coach and a coach who would guide me through the steps to achieve a certain goal or an outcome that I would see a counselor for things that were around emotional challenges and issues.

    Bill 25:03

    And they would help me overcome what I was feeling, my anxiety and my feelings of feeling down. And we would have therapy sessions that were based around cognitive behavioral therapy. And we would use techniques, I would be advised of techniques that I could use to help get me for example, as I said before, out of my head and connected to my heart, and decrease the cycle of anxiety, and take it away so that I could get clarity and then approach life in a different way.

    Bill 25:38

    Because clarity is a hard thing to get when you’re recovering after stroke, because you could be suffering from your neuro fatigue. And you could be suffering from other cognitive issues. So I didn’t want to also be working and making my clarity less clear, I didn’t want to be in the way of clarity, I wanted to try and minimize my negative impact on clarity.

    Bill 26:05

    So asking for help also came from doctors by getting a second opinion. If I didn’t like what a doctor had to say to me about their approach to my care and my well being, I would get a second opinion. And I would continue getting a second opinion until I found somebody that was going to work with me in the way that I wanted them to work with me.

    Bill 26:25

    Now, it’s not that I argued with people, it’s that sometimes I didn’t feel comfortable seeking help medical help from certain medical professionals. So I found medical professionals, that I preferred to get medical help from and I continued seeing them rather than the other people.

    How To Manage Setbacks After Stroke Tip 6. Wait it out

    Bill 26:47

    So hopefully, those few little bits of wisdom, I suppose from me regarding asking for help will help you as well. Now, tip number six is wait it out. Now often waiting, just waiting, and doing nothing will bring positive change, because things go in cycles, they’re going in waves.

    Bill 27:11

    So when you’re at the bottom of the wave, if you just wait it out, you’ll eventually catch the wave, and you’ll get to the top of the wave. And waiting it out, kind of coincides with do less, and also coincides with rest. So it’s a good way to do less than rest. And you can have this conversation with your family and friend, if they’re asking you what’s going on? How are you feeling? or Why aren’t you up and about? or Why aren’t you doing the things that you were supposed to do?

    Bill 27:42

    You can say look, I’m not feeling well at the moment. And I’m just going to wait it out. And I’m going to get to that point where I’m going to feel better, because the cycle will move from a low part of the cycle to a higher part of the cycle. I’ll ride the wave out. And eventually I’ll be on top of the cycle. And I’ll be able to get those things done.

    Bill 28:02

    So you have to be patient with me apologize and say, you know, just give me some time. And I’ll be alright, I’ll get there. Now, what’s really important when you’re waiting it out is that you’re remembering the cycle, you’re remembering that recovery is a cycle, it is a wave, and you will get to the bottom of the wave and you will get to the other side of the cycle, you just need to wait it out.

    Bill 28:28

    And why you need to remember that is because as you’re going into the cycle, you need to prepare for the next one, you need to get yourself to that point where I’m at the top of my game right now I’m feeling the best I’ve felt in a little while. And I’m going to enjoy this time and I’m going to make the most of it.

    Bill 28:46

    But I’m not going to overdo things and stop paying attention to how my body is responding and what feedback it’s giving me. I’m going to wait to notice when the cycle is starting to dip again from a high to a low. And when I’m starting to find that I’m riding the wave from the crest to the trough again.

    Bill 29:08

    And then that way I’ll be prepared for the next one and I’ll be able to put more things in place to give people a lot of notice that I’m coming to that point where I’m going to be experiencing perhaps some low days or some down days and that they should be aware of that and then it’s okay that I’ll be there. But if they know about it, then they can also be comfortable with me being there and not be too concerned.

    Bill 29:36

    And especially that was a good one for family and friends especially partners that are in the home around you or with you all the time and children as well because children will get negatively affected by mum or dad’s mood and energy levels. So it’d be really good if we could educate them at that time.

    Bill 29:59

    And then what that does That brings everyone into an awareness and an understanding. And then that reduces stress and anxiety. And it helps people to just feel better about some of the low times that are coming. And it’s a good lesson in life anyway, for those children and for other people in your family.

    How To Manage Setbacks After Stroke Tip 7. Practice gratitude


    Bill 30:17
    Tip number seven, and one of my favorite tips is to practice gratitude. Practicing gratitude is such an easy thing to do, and it gives back so much. So when I’m getting to that point where I’m in a setback or experiencing a setback, or trying to get out of a setback, I just practice gratitude.

    Bill 30:42

    And I’ll take note of the things that I am grateful for, at the beginning of the day, three things that I’m grateful for, I might do it while I’m in bed, sometimes without a notepad without actually writing it down.

    Bill 30:57

    So as I wake up in the morning, it helps me to just feel grateful and have this different kind of vibe when I’m getting out of bed. And also, at the end of the day, I am practicing gratitude, because again, it helps me to take this really cool and children really comfortable and happy vibe to bed.

    Bill 31:16

    And I think it sets me up for sleeping well at night. So, practice gratitude, write three things down at the beginning of the day, and three things down at the end of the day. And do it for as many days in a row as you can. Now, technically, you can do it for 365 days a year, because it’s not a big thing to ask, or it’s not a big thing to do in your head, it’s a very easy thing to do so.

    Bill 31:43

    But if you get bored of it, I’m going to do this, I’m going to set you a little challenge and do it for at least seven days straight. And at the end of those seven days, read your list. Make a note of all the things that you’ve written there, at least six things every day, for seven days.

    Bill 32:03

    And then you’ll be amazed at what it is that you’ve noticed, and that you’re paying attention to now that you weren’t paying attention to at the beginning of the seven day challenge. And that’s a really easy challenge. If you do it, you won’t get any reward from me, but you will get a reward from yourself, if you don’t do it there’s no such thing as failing this challenge, do it once and you’re a winner to twice and you’re a winner, it makes no difference.

    Bill 32:31

    So if you start it and stop it, don’t feel bad about it. Just get back to it when you can, it’s really, really important. Now, if you do complete the seven days, and you really appreciated the or you’re grateful for the experience of going through practicing gratitude, then just give yourself another seven day challenge and start again from the beginning.

    Bill 32:56

    And just keep adding to that list. And it’s okay if you add the same things on multiple days, it’s really perfectly fine. But you’ll find that you’re adding a lot of different things that you’re not grateful for.

    Bill 33:09

    So to wrap up this episode, one of the things that I’m grateful for at least one of those things that I’m grateful today is that I can actually sit here and do this podcast episode, it’s taking me three days to get to this point. But now that I’m here, I’m really pleased to be able to get back to this space where I can concentrate, give you my undivided attention for more than half an hour.

    Bill 33:35

    And hopefully give you some tips that are going to make your setbacks a little smoother, and less concerning and worrying. Now, if you’re having a setback that’s related to your health and well being and you think that it’s got something to do with your stroke or your condition, do not hesitate to go back and see your doctor.

    Bill 33:56

    And absolutely straightaway tell them that you are worried if your setback is serious enough, and if you’re concerned enough, and if you’re worried enough, go and see a doctor do not hesitate. And this guide or these seven steps or seven little tips to how to navigate through setbacks is for those general setbacks, those life setbacks that stroke interferes with that makes us feel a little bit down and makes us feel a little bit concerned about how our recovery is going and how long it’s going to take.

    Bill 34:36

    So just to wrap up, let me say this. So just to wrap up, let’s do a quick recap. So tip number one is rest. Do less sleep more. Tip number two was reassess. Reassess what’s working, do more of that and what’s not working and do less of that.

    Bill 35:01

    Tip number three was changed something, changed the people you hang around with or the type of work that you do or what you eat and when you eat it. Tip number four, get out of your head. Take a deep breath connect to your heart.

    Bill 35:16

    Tip number five was ask for help see a counselor or a coach, get a second opinion. And don’t necessarily hang out with people and then make them feel like you need them to answer all your questions, especially when they’re not qualified to do so.

    Bill 35:36

    Tip number six is waited out, wait for the cycle to end. And then tip number seven was practice gratitude. Now. I really hope that you enjoyed this podcast episode if you did, I would really appreciate it if you give it a thumbs up on YouTube if that’s where you’re watching.

    Bill 35:54

    If you give it a five star review on your favorite podcast app, if you would like to share it, please do share it with somebody on your social media. And if there’s anything that I can do for you just reach out, you can send me an email at [email protected] I enter all my emails personally. And thanks for being a frequent listener to my podcast. I really hope that this episode is going to help you in your recovery after stroke.

    Intro 36:31

    Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 36:58

    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 37:14

    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 37:35

    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 37:49

    If you are experiencing a health emergency or think you might be called 000 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 and our content we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

    Intro 38:12

    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 To Manage Setbacks After Stroke – Bill Gasiamis appeared first on Recovery After Stroke.

    39 min
  • Losing Your Independence After Stroke – Ruth Carroll

    Ruth Carroll gave birth to her son on March 31 2017 and the very next day experienced an ischemic stroke which was a result of complications from a brain tumor.

    Social:

    www.instagram.com/ruthie_carroll84/

    Highlights:

    01:08 Introduction

    01:46 Ischemic stroke caused by a meningioma
    07:18 Doctor’s predictions
    13:45 Losing Your Independence After Stroke
    19:07 Grade 1 meningioma
    28:58 During the early stage of recovery
    34:43 Neuro fatigue
    45:18 Motherhood during stroke recovery
    56:06 The hardest part of the journey
    1:00:19 Supporting stroke survivors

    Transcription:

    Ruth 0:00

    You know, for example, my husband, we were newlyweds really, when this happened, we weren’t married quite a year at that stage coming up to a year. But for him, for example, you know, he married a very independent woman, and you know, within the space of a few hours, I was completely dependent on him, for everything to stand up to use the bathroom to move an inch, I mean, he had to do everything.

    Ruth 0:31

    The stuff that a newlywed husband shouldn’t have to do. So, all the little mechanics of standing up from the wheelchair, Dave had to physically lift me up and, you know, taking down my trousers, for example, I couldn’t do it. I didn’t have the stability in my body to even bend down.

    Intro 0:54

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

    Introduction


    Bill 1:08
    It’s bill from recoveryafterstroke.com. This is Episode 131. And my guest today is Ruth Carroll. Ruth had to give up her independence as a result of an ischemic stroke caused by a brain tumor just one day after the birth of her son in 2017. Ruth Carroll, welcome to the podcast.

    Ruth 1:29

    Thank you Bill.

    Bill 1:30

    So is it Ruth or Ruthie?

    Ruth 1:34

    It’s Ruth.

    Bill 1:35

    Okay. Instagram has Ruthie. And sometimes I don’t know whether the Instagram name is the real name or not the real name.

    Ruth 1:43

    Yeah, course. No it’s Ruth.

    Ruth Carroll had an Ischemic stroke


    Bill 1:46
    Tell me a little bit about what happened to you?

    Ruth 1:50

    So yeah, in 2017 April 1st actually April Fool’s Day. In 2017, I suffered a stroke. I was nine months pregnant initially with my first baby. And in my ninth month, I just started to get some swelling in my right eye, and my pupil became quite dilated. So I went to Specsavers to get that checked out.

    Ruth 2:16

    And I was advised to go into a&e to get an MRI scan. So of course, I did that. And I was diagnosed with a brain tumor called a meningioma. So we very quickly had to have a C section to get my baby out. So my little baby boy, Bobby was born on the 31st of March 2017.

    Ruth 2:36

    So he was perfectly healthy thank God the very next day, then it was less than 24 hours, it wasn’t quite a full 24 hours, I was back in his ward visiting him. And that’s where I suffered an ischemic stroke, essentially, because of the pregnancy hormones. It grew my tumor very quickly. And tumor growth blocks the flow of the blood flow to the brain. And that’s what caused the stroke. So I was left side paralyzed.

    Bill 3:09

    That’s too much for a new mom, a new baby, that’s just too much. That’s not supposed to happen, is it?

    Ruth 3:17

    No, not at all. It was a crazy time.

    Bill 3:22

    How do you manage the emotions that are related to that? Because there’s this amazing, beautiful reason to be happy and joyful. And then there’s this other stuff that’s happening. What do you do that? How do you manage?

    Ruth 3:39

    Yeah, you know what I don’t think my mind allowed me to take in the seriousness of it. You know, I just went obviously, I was very emotional, very upset, my family were distraught.

    Ruth 3:54

    But I just went day by day. My world was in the hospital beds that I was in, the nurses who were taking care of me, the doctors coming and going. And that’s all that I was able to focus on.

    Ruth 4:08

    You know, I couldn’t really stand back and think, Oh, my God, I’ve just had a newborn baby, I’m paralyzed, I can’t move. I wasn’t able to take in all of the trauma that was happening. And I just kind of let it go over my head really, and just survived day by day.

    Ruth 4:26

    That seems a common thing. When I’ve interviewed people who have had multiple life events happen at the same time as their stroke. It really is just let it pass through to the keeper and don’t worry about everything at once because it’s impossible.

    Bill 4:46

    Also, stroke survivors are not sometimes capable of creating those types of worries and connections because the brain has been switched off or is partially not working or there’s other stuff going on. Who took care of the baby?

    Ruth 5:02

    My, my husband poor Dave, my husband. I mean, he never held a newborn baby, you know, never change in nappies. So it was very traumatic for him as well as me and everyone else.

    Ruth 5:17

    Well, we live next door to my in laws. So Dave’s parents live next door. And they were a great support they took in Bobby, for a couple of months, I think, maybe two or three months. So Dave was able to go back and forth and be with Bobby. So that was a huge help and a huge relief for me as well, obviously, knowing that he has been taken care of so well.

    Ruth 5:40

    Did you have any challenges connecting with your baby? Because, you know, they talk about those first. few moments are really important. And then the next few months are extremely important for mom and baby to connect. Did you find later on any of those issues reflecting back on your connection with your baby?

    Ruth 6:03

    Yeah, you know, I was lucky, it didn’t impact our relationship. When I kind of stand back and look at everything that happened, it was the hardest part to deal with. Because Bobby was seven months old when I came home from hospital.

    Ruth 6:19

    So I essentially had missed the first seven months of his life, which, you know, is obviously very upsetting. But a lot of consultants in hospital, I saw a few neuro psychologists, I think, you know, had said to me, look, it’s probably likely that you will suffer from postnatal depression, after such a trauma the day after birth.

    Ruth 6:43

    So I think everyone’s expecting that to hit. But luckily, thank God that never happened. I think it was the support that I had, from family and friends, everyone, I was just surrounded with love, and support.

    Ruth 6:59

    My Bobby was brought into me every single day in hospital. So I did get to hold him in my head and on my chest. And that helped. Even though to be honest, I was out about half the time, and I was very fatigued. So it was you know, it wasn’t a lot of engagement with him.

    Doctor’s predictions

    Ruth 7:18

    I get I get cranky when people tell me what’s going to happen to me. When doctors are trying to predict the future and all that kind of thing. They never normally try to predict the future in a positive light, they always try to predict the future in a negative light. What’s it like for you to hear that at that point in time? And did you pay attention to it? And then reflecting on it now, what are your thoughts on these predictions that doctors make?

    Ruth 7:46

    I can see why they made that prediction. You know, now that I’m so much stronger, I often find myself looking back going, Oh my god, I can’t believe that happened to me. And I can see how someone would slip into that postnatal depression.

    Ruth 8:01

    But I can see why. But I completely agree with you, in terms of doctors, focusing more on the negatives and the positives. One experience I had Bill when I was in our rehab hospital here, my left arm is still non functioning. The hand is completely paralyzed, but I am getting some movement back and the arm.

    Ruth 8:23

    But I did have a physiotherapist actually sit me down and say, Ruth, you’ll never ever get movement back in this upper limb, you need to just go away and learn to live life one-handed for the rest of your life, you need to understand that.

    Ruth 8:39

    It was heartbreaking at the time when I was told that and looking back now I’m like, you know, a positive slant would have been so much better. You know, for example, Ruth, there’s hope work hard and you’ll get this arm back. I can’t understand why they focus on the negative so much.

    Ruth 9:02

    In hospital, I put a lot of doctors in their place, especially when they spoke to me in this kind of way. If a physiotherapist told me to do that, I would have reported that person to their superior. And I would have told their superior that this person is not worth the salt, not worth their salt.

    Bill 9:22

    They’re not worth having, in an organization that’s supposed to encourage people to be rehabilitated and set an expectation of a long road forward fine set an expectation of very small gains, and maybe no gains for a few months and maybe no gains for few set all those expectations but never create the expectation that something is not going to get better.

    Bill 9:45

    I just think that’s the most terrible thing that somebody who’s helping is supposed to do and if any one of those types of people are listening whether there’s a doctor or nurse or a physiotherapist listening now, it is not your job to try and predict the future for your patient. It’s your job to help them right now.

    Ruth 10:05

    Absolutely, we should know, but nobody can predict the brain is so complex. And so plastic as well the whole neuroplasticity side of the brain. I mean, nobody no matter how amazing or educated they are, they can’t predict what each person’s individual brain is going how they’re going to react to the paralysis, whatever the trauma was.

    Ruth 10:29

    Another thing about It is what do they base their response on or that answer on? I know that they’re in their job, and they say lots of things. But they don’t have the data for every single person’s version of their stroke and outcomes.

    Bill 10:47

    So instead of knowing instead of just going based on I don’t know their version of the world, I think they just need to take a breath and just stop before they speak and just smile and encourage rather than the opposite, but I don’t blame them. But it really frustrates me and I don’t take it to heart anymore. But I could see how people would and then also set themselves up for failure.

    Ruth 11:18

    Absolutely. Because it demotivated me for quite a long time I found myself before she said those words to me, I was like, right, let’s go. Let’s work hard and physio every single day.

    Ruth 11:30

    And then she, you know, those words were said to me, and I found myself going off, why bother getting up early in the morning? You know, and work trying to work hard if there’s no hope. So really, it’s a really awful thing to do to someone.

    Bill 11:44

    Yeah. I going through the stroke journey that I’ve been through, at some point, I stop and reflect on what my experience is doing to the people around me. And it’s fair to say that the people around me, were losing their shit. While I was going through my stroke experience, how’s your stroke affected the people around you?

    Ruth 12:11

    You know, I think it’s actually worse for friends and family a lot of the time than it was for me, because as I said, just there earlier, you know, a lot of time, especially in the acute stage of stroke recovery, I had no awareness of what was going on or when I was in ICU and I was just out of it.

    Ruth 12:34

    You know it’s fine for me to just lie there while medics take care of me, but I mean my family where there watching all of that, they were completely distraught. So it impacts so many people. You know, for example, my husband, we were newlyweds really, when this happened, we weren’t married quite a year at that stage coming up to a year.

    Ruth 13:00

    But for him, for example, you know, he married a very independent woman, and you know, within the space of a few hours, I was completely dependent on him, for everything to stand up to use the bathroom to move an inch, I mean, he had to do everything.

    Ruth 12:16

    The stuff that a newlywed husband shouldn’t have to do. So I mean that’s had a hugh impact on his life, my parents had to give me alot more support now than they would’ve had to. So it impacts alot of people.

    Bill 13:38

    With regards to using the bathroom, forgive me for asking, but for the lung, or just to get you there.

    Losing Your Independence After Stroke


    Ruth 13:45
    For everything, I mean, I was so bad I couldn’t hold my upper body up, I was just bent over to the left, absolutely zero movement. You know, so we have to get a commode into the sitting room in the house because there was no physical way that I could get out of the wheelchair and sidestep into our downstairs toilet, which is quite small.

    Ruth 14:09

    So all the little mechanics of standing up from the wheelchair, Dave had to physically lift me up and, you know, taking down my trousers, for example, I couldn’t do it. I didn’t have the stability in my body to even bend them.

    Intro 14:26

    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 14:43

    Doctors will explain things but obviously you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation? Stop worrying and hit recoveryafterstroke.com, where you can download a guide that will help you.

    Intro 15:05

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

    Ruth 15:29

    So nothing, absolutely nothing was possible to do on my own. So he did have to step up and do everything.

    Ruth 15:36

    That’s dramatic. And I remember being out of I think it was out of surgery and being in hospital and needing to go to the toilet, but the nurses weren’t answering my buzzer. And I couldn’t walk, I couldn’t use my left side at that point in time. I hadn’t been to rehabilitation yet I was waiting to get to rehab.

    Bill 16:02

    And I was using a wheelchair and they weren’t coming. And I needed to go because they’d given me laxatives after surgery to get the bowels moving and working and everything running again. And the laxatives kicked in, and there was nobody there. So I dragged myself with my right side of my body into the wheelchair to start pushing myself towards the toilet, which was maybe five meters away.

    Bill 16:32

    And by the time I got to the toilet, the nurse came and said, What are you doing? And I said, well, I just want to get to the toilet because these laxatives have kicked in and I need to get there. Let’s not talk about it. Let’s just get me there.

    Ruth 16:47

    Exactly.

    Ruth 16:48

    They finally got me there. And when they got me there, they wanted to stand inside the room while I did my business. And I said to him, No, you can’t please, you can’t do that you need to get out. And they wouldn’t get up for safety reasons. And I was having argument with these people, amazing nurses at the toilet.

    Bill 17:08

    And eventually I convinced them to go I told them I promise I won’t move. I won’t get up. I won’t try and do anything. I just need you to get out. Because I couldn’t imagine what it would be like for me to have them in there while I was doing my business not to mention, what do you talk to somebody when they’re watching you in the toilet?

    Ruth 17:26

    I know. It’s awful. I’ve been through all of that. It really, I just found I had to switch off. You know, and really not focus on the fact that, you know, there was it could be a male nurse standing next to me while I was on the loo chatting about the weather. I mean, embarrassing stuff.

    Ruth 17:44

    But it was just it was reality. You know, there was no other way I wouldn’t have been able to be left alone. You know, I would just flip over to the left hand side and be on the floor.

    Bill 17:57

    Well, you understand, have you spoken to your husband about those times? Have you guys reflected on that time?

    Ruth 18:05

    Yeah, he mocks me. You know, he’d always say you owe me big time. We can look back and laugh about it now. But at the time it was upsetting. Which has it’s funny now.

    Bill 18:19

    How old were you both at the time when this all happened?

    Ruth 18:23

    I was 33. Dave was maybe 38, 39?

    Bill 18:34

    Did you both take vows that said something like in sickness and in health and all that?

    Ruth 18:39

    Yeah, we did. So yeah, we really stuck to that.

    Bill 18:43

    Poor guy. He never knew what he was getting himself into when he said those vows.

    Ruth 18:48

    Exactly. Yeah. I’m very lucky to have him. No, he’s great. very supportive.

    Bill 18:55

    Sounds like you guys are gonna get through this difficult time. Where are you at with the diagnosis and with what was discovered in your brain?

    Grade 1 meningioma

    Ruth 19:07

    Yeah, so they basically discovered it was called a grade 1 meningioma tumor, which is actually my neurosurgeon said to me, if he had to pick a tumor to get that would be the one he would pick. It’s not a very dangerous tumor itself. Not that anyone would be picking that but the problem for me it was the location of tumor.

    Ruth 19:32

    It was wrapped around my optic nerve behind the right eye. And it was going right through the carotid, the internal carotid artery, which is a very dangerous and very important artery to supply blood to the brain. So the location of it was a big problem.

    Ruth 19:49

    So there was a lot of conversation between my family myself and our neurosurgeon, and he kind of bounced ideas and procedures with us. They’re neurosurgeons not just in Ireland, but in Europe and America. I think he said he went as far as. So it was a lot of a lot of discussion about that before the surgery took place.

    Ruth 20:11

    So I had a craniotomy, then, in April 2017, and that removed the tumor pretty much removed about 98 point something percent of the tumor. I still do have little crumbs left, but there are luckily fine. They just have to be monitored every six months. Yeah, to make sure they don’t grow.

    Ruth 20:36

    How’s your emotional state leading up to that next appointment? Do you find yourself being cool, calm and collected about it? Or do you have a different experience?

    Ruth 20:49

    When those MRI scans are coming up every six months? I’m nervous. You know, my neurosurgeon is great guy, Dr. McNally. As in, he’s really relaxed and casual. Like the last time I went in, you know, you’re waiting there. And he comes in Hi. And I’m, like, no, no chitchat just say yes, how is everything?

    Ruth 21:10

    You know, and he’s like, it’s fine. Everything’s fine. There’s no problems. He’s really relaxed about it. And, you know, he said to me, the last time Ruth if those crumbs were going to grow, you’re looking at 10, 15 years for those crumbs to grow.

    Ruth 21:25

    So, you know, he was like, I wouldn’t worry about it. We just keep an eye on it. So he’s a very relaxed kind of person, which helps to relax me. But yeah, quite nervous, though. Coming up to it, just in case. You know.

    Bill 21:40

    How do you enjoy being in the tube of the MRI scanner?

    Ruth 21:45

    You know what, initially, I hated it, the noise and I was quite panicked. But now I have had so many, it doesn’t faze me at all. The last two scans that I had, I actually fell asleep. I was coming out. And you know, I was woken up to Ruth tap, tap tap.

    Ruth 22:04

    I was like, Oh, that was quick. I mean, they were laughing at me going. It’s not often people fall asleep. I actually found the noise quite relaxing. I’m a pro now. I’ve done so many of them.

    Bill 22:16

    Interesting how many do you reckon you’ve done?

    Ruth 22:20

    Like, I don’t know, I was in about four different hospitals here in Dublin, and Ireland. I mean, I don’t know 50, maybe. I mean, I honestly spent my time being transferred from my wards or my room, to the MRI, or a CT scanner, back and forth, back and forth. I felt I was doing that every every few days.

    Ruth 22:45

    Now, that’s quite the record, I reckon that’ll be up there. I think I’ve done maybe over the five or six years that I was getting scanned, I think I’d probably done at least, I’d say maybe 15, something like that. And by the end of it, I was doing the same thing. And because you can choose your own music, I was choosing meditation, kind of music.

    Bill 23:08

    So I’d go in there and meditate. And that would get me through very quickly and make it feel like it went fast. And also, that was really it was almost putting me to sleep. But I’ve got to say that’s awesome. What you’ve been able to achieve. I’ve never felt asleep.

    Ruth 23:26

    I did have one scan, and I came out and there was two guys and a girl and they were giggling when I came out. And they were like that was some good singing Ruth. I was like what? They were like obviously they can hear everything through the speakers. I didn’t realize I was singing away that was embarrassing.

    Ruth 23:46

    Yeah, I found you on Instagram. Where is the most amazing place where I’ll find all my guests and other people who would discuss things that are stroke related. It’s become kind of a community of a lot of familiar faces and new faces coming in and out. How long? How long have you been on Instagram? And why did you choose to get on there and do what you’re doing?

    Ruth 24:16

    I joined Instagram, I think it was last summer sometime. And before that I was absolutely clueless when it came to social media. I did have a Facebook page. And when I was traveling, I threw up pictures, more for my family and friends to see. But I just wasn’t glued into the world of social media and I had no interest in it really.

    Ruth 24:38

    Until all my friends and everyone I knew started going on it. So someone said it to me a friend of mine said you know you should talk about your stroke experience. And you know, there could be someone out there who you might help. So then I was like that I like that idea instead of just posting you know, when I go out for dinner, what I eat and all that kind of stuff.

    Ruth 24:59

    I though, there was a reason why I should do it. So I just set it off last summer. And it is amazing. There’s a whole community of people out there who have had strokes, like young people. I’m, really enjoying Instagram, I must say, the amount of messages I get from people if I post a video positive, and then no, no, no negative comments, really.

    Ruth 25:24

    But people looking for further information. And it’s great. It’s a good feeling to be able to help someone, a lot of people, you know, would come on to me going, Oh, I never knew that you could do that exercise for your arm, for example. You know, so it’s nice to share what knowledge I have. So I’m really enjoying it.

    Ruth 25:46

    Yeah, it was selfish. When I started this whole journey. It was selfish, it was about me. And I quickly realized it wasn’t really about me, it was about other people. And what I say it was about me was, I found that as a way of expressing myself made me, you know, ease the burden and get things off my chest.

    Bill 26:08

    And then it started helping other people. And then that completely changed the the type of satisfaction that I was getting from posting. It was a twofold It was a two way path. It wasn’t just me getting things off my chest and making it about me. And the other part of it is the more addictive part of it.

    Bill 26:33

    It’s when somebody says thank you, or I needed to hear that or asks another question. That is something I can’t stop doing. Because I never knew that what I had to share was important enough for other people to, to hear.

    Ruth 26:51

    To connect with. Yeah, and the exact same. I remember a moment I was in a hospital called St. James’s hospital here in Dublin. And I was in the stroke Ward, it was quite early days. And I just remember I was turned on my right hand side, you know, probably in my queue, I needed three nurses, or healthcare assistants to actually turn me on the right hand side while protecting my left shoulder.

    Ruth 27:16

    But I just remember lying there, and I have my phone up to my face. And I was thinking, I thought I was the only person in the world at 33 years of age who has had a stroke. And I typed into YouTube, I just said, you know, young stroke survivor girl, and a video came up of this girl, she was 33 as well, when she had her stroke, really a beautiful girl with long brown hair.

    Ruth 27:45

    And she came onto the camera, you know, and she started talking, she was kind of she was normal, she was happy. And she was like, Look, you know, this is awful what happened, but it’s not the end of the world. And then the next video from her was her walking in the park with her mom.

    Ruth 28:04

    And I can’t explain to you the hope that that gave me. I was just so happy to see that. And so hopeful. So I often think you know, if there’s some girl or guy out there in the hospital bed, if they could see me on Instagram, you know, doing well. And just, you know, to be able to help them the thought of that is amazing.

    Ruth 28:27

    That’s the point of this podcast. It’s the point of it is, you’re gonna be 131 episode. And that’s the point of it. The point is it to have, I’m not sure if it gets to 1000 but 1000 ways that people can find other stroke survivors who are post stroke at some point. And they can just say, this is how far I’ve come even though I’ve got all these dramas and problems and things that haven’t been resolved yet.

    Ruth 28:55

    There’s still life after stroke.

    Ruth Carroll during the early stage of recovery

    Ruth 28:58

    Yeah, I’m still doing stuff. I’m still on an interview. I’m still meeting people. I’m still getting back to work. I’m still recovering all those things. I mean, it’s so important your mindset in hospital, was it doom and gloom? And if it was, that’s fair enough, is how would you have described your mindset when you’re in that really early stage of recovery?

    Ruth 29:24

    It was it was doom and gloom and it was fear was my main feeling. I was just so afraid. Like I couldn’t foresee I couldn’t get my head around the fact that I was paralyzed. It was just such a crazy thing to me, looking at my body and trying to move it and not being able to so it was a lot of tears, a lot of crying. I was completely in shock as well as my family.

    Ruth 29:52

    But my mindset is stronger than I thought. You know, I still luckily have a lot of motivation and drive. You know, I was the type of patient who, you know, was saying, I want more physio, come on, can I have another ot session and bring it on, you know, I don’t want to just lay here in the bed. So I was driven. I was like that before the stroke as you know, in terms of work and in my personal life.

    Bill 30:24

    What kind of work did you do?

    Ruth 30:27

    I worked in marketing as a brand manager. For McDonald’s. I was there for 10 years. So it was a busy, stressful, fast paced job. In a way, this brain injury was one of the best things that happened because I’m no longer working, I’ve been advised not to work for for a good few years.

    Ruth 30:49

    So I’m enjoying this new way of living, you know, stress free. And, you know, I’m getting great quality family time in that I know I wouldn’t have got if I was still stuck in that crazy world of stress and work. So there is a positive in every negative situation. I’ve learned that it’s just about making yourself focus more on the positive and the negative.

    Ruth 31:16

    Yeah, and give yourself enough time to see the positive as well, because sometimes it’s hard to see when you’re in that acute stage. It’s interesting that lockdown has been similar for me in that again, when we were in COVID lockdown here in Australia in Victoria, we were locked down for six months solid, we had nightly curfews we weren’t allowed to work almost under any circumstances.

    Bill 31:46

    We had nowhere to go, nothing to do. We weren’t allowed to meet with people anywhere. And Australia being an island has been able to really maintain, maintain its ability to decrease the number of cases of COVID through these really severe lockdowns, which people hated and I hated.

    Bill 32:08

    But as a result of that, we’ve come to that point where there are very few daily cases and almost no cases from community transmission. And I was going through that lockdown at one stage thinking this reminds me of my stroke. Recovery when I came home from hospital and my wife went back to work and my kids went back to school. I was alone at home doing not much most of the day.

    Bill 32:37

    And that was a really good time for me. Because when I came home, the noise was too much for me to handle. The business was too much for me to handle. My brain really needed recharge time, I needed to not be overwhelmed so that I could manage for the three or four hours before bed, and before dinner and all that type of thing.

    Ruth 33:03

    Yeah, absolutely.

    Bill 33:04

    What kind of things do you have to deal with now that are related to the stroke that you have to pay attention to and be careful of?

    Ruth 33:14

    Yeah, so for me, it’s mainly physical, you know, the, I can walk independently now. But for a long time, I needed a cane and I was in a wheelchair for a long time. It’s my left arm and hand that is my main physical disability really, cognitively, I was quite lucky that I wasn’t too impaired.

    Ruth 33:36

    I suppose in the early days, like you mentioned there Bill, my brain was very sensitive to noise or to distraction. You know, I remember I was being wheeled down to the patient’s canteen in one hospital. And there was definitely over 100 people in the canteen eating, you know, the noise of the cutlery people walking past.

    Ruth 33:59

    And I mean, I had to scream to say get me out. It was so overwhelming. My brain just couldn’t, couldn’t deal with it. Even you know, if I was sitting in my wheelchair and someone walked past I was like, Wow, it made me dizzy and made me feel sick. Everything was just so overwhelming in those early days.

    Ruth 34:20

    But naturally, that just seemed to improve over time, thankfully, but I had problems initially, with concentrating. I found it hard to concentrate for a long period of time. You know, I could be having a conversation and I might just kind of switch off because that’s improved as well.

    Neuro fatigue

    Ruth 34:42

    But my main issue from this whole brain injury is fatigue. This neuro fatigue I find really, really difficult. From day one. It’s been my biggest struggle, and now four years on, it’s my biggest struggle. It’s, crippling is the word I would use. I mean, it impacts every minute of every day.

    Ruth 35:09

    But, I’m learning to, to tackle it better. You know, I’ve come up with a few strategies to make life a bit easier. Like, you know, I have to plan out my day now, even before you and I spoke today, as the most recent example, you know, I went out for a walk with my husband and son in the park.

    Ruth 35:30

    And we went to the playground and a lot of people there, you know, talking and catching up with a lot of people. But I knew that I had to do that early on. So I could come home and relax, and go up and get my 40 minute nap. And then I’d have the energy to sit here and talk with you.

    Ruth 35:47

    But, you know, if, for example, I had done that a couple of hours ago, I would find it very hard to to sit here and engage with you. So I just have to be smart. And I have to plan out the day, I have to plan in my naps. So I do get at least 140 minute nap in. And once I can lay down and switch off the brain, I’m energized then. You know, which is great.

    Ruth 36:11

    Yeah, that would be very familiar to a lot of people listening. And the fatigue to me, although was debilitating was one of the hardest things I had to put up with as well, was a really good way. It was something that taught me to pay attention to my body for the first time and to listen and to respond not only just know that I’m about to get tired, but also respond and do something about it.

    Bill 36:41

    I did all the same things that you say that you do, which is plan my day. And I would often we have some plans for the weekend with my wife. And I’d say, Listen, don’t make any plans for tomorrow. Because I don’t know if I’m going to be up to all the things that you want to do. And that was about me, don’t make plans for me. And then I would wake up that Saturday morning. And I said to remember that thing that I said yesterday about Mike my plans. I’m feeling great. Let’s go for it.

    Ruth 37:13

    Yeah, you just never know. I mean, the days that I should be exhausted, and say I went out for dinner with friends for four or five hours talking. And when you think the next day, next morning, I’d be exhausted, I could be bursting with energy. And vice versa when I should be alert. I mean, I could read on the floor with exhaustion, it’s really hard to figure out fatigue, I find you just never know when it’s going to hit.

    Ruth 37:42

    And I can just hit like that, you know, I could be absolutely fine one minute, and the next minute, I would struggle to hold my head up myself, it would just take so much energy to do that. And people don’t see how difficult fatigue is.

    Bill 38:04

    One of the things that I found that was making my fatigue worse was my thyroid function. The neurological fatigue that occurs from the thyroid gland that is not working optimally, is exactly the same as neurological fatigue after they had been my head.

    Bill 38:21

    And I developed a thyroid condition a few years before my brain issue. And it was an ongoing issue after the brain surgery. And we hadn’t done anything about the thyroid, because I was still fresh from a brain injury. And I got to the point where I didn’t know that my thyroid was causing the neurological fatigue, I thought it was related to my head until I went to a chronologist.

    Bill 38:50

    Who said by now the fatigue that you’re experiencing is more likely related to your thyroid challenges rather than your head challenges. So one little tip that may or may not have anything to do with what you’re going through is for people listening is to get their thyroid checked out just as a general thing that gets them some blood tests get a urine test.

    Bill 39:15

    That’s the best way to get the thyroid checked out. Because sometimes if the thyroid is underactive, and it’s under duress, or you’re not consuming enough iodine, sometimes what happens is the brain needs more resources than it used to, to get us through the day. And going everywhere, it’s going everywhere to try and get resources and if the thyroids not working optimally, it might struggle a little bit.

    Ruth 39:49

    Yeah, I never heard of that. That could really be another problem. That definitely contributes to my fatigue is anti-seizure medication that I’ve had to started taking, I developed focal epilepsy after my craniotomy just due to a tiny scar that was left on my brain while with the surgery.

    Ruth 40:10

    So as a result of that I have to be on and I will have to be on for the rest of my life anti-seizure medication. The first medication that I was on was called Keppra. And that the main side effect of that, and supposedly every anti-seizure medication is fatigue, I had to come off Keppra.

    Ruth 40:30

    I mean, it was I couldn’t function. I couldn’t get through the day fatigue wise on that. So I did switch over to another one that I’m currently on called Lamictal. And I did see a slight improvement initially, but then it got bad again and back and forth. But my neurosurgeon said to me, you know, what, one time I was talking about the different strategy strategies I was putting in place for fatigue.

    Ruth 40:56

    And he said to me, Ruth, at the end of the day, your brain is damaged as a result of the stroke and the tumor. You know, no matter how many good strategies you have in place, you are going to have neuro fatigue, until the brain fully recovers.

    Ruth 41:13

    Yeah great advice. And I feel like my fatigue is mostly gone. But then it still comes I’m nine years post my first stroke and brain surgery was in 2014. So I’m nearly on beyond six years after brain surgery. And I have those days where I’m having a great day, and then the wall just turns up out of nowhere, I hit that wall.

    Bill 41:40

    And then it’s just tools down and has nowhere to go or do anything and it’s just relax and rest and go to bed early. And then I fully wake up the next day feeling better. But some days, if I don’t get a good night’s sleep, then then the struggle lasts two or three days.

    Bill 41:58

    And I’m supposed to be online every two or three days doing things. And if I go quiet, I go quiet. There’s nothing I can do about it. I’m not worried about it. I’m not concerned about it. I just go quiet and gather myself and then I get back to doing what I have to do.

    Ruth 42:16

    Yeah. And so people handle fatigue better. What I mean by that is, you know, my family, for example. They are well educated on neuro fatigue. And you know, they’ll know, you know, if I go home down to South of Ireland, where I’m from County Cork, you know, my parents and my sisters will say to me, okay, we’ll do this, we go shopping, we go see the nieces and nephews do everything that I love to do.

    Ruth 42:44

    But you go you sleep, and then we’ll do this. So they get it and they encourage it but I find other people don’t understand this and kind of like why aren’t you coming here? Why aren’t you doing that? Why do you need to go home and rest? What’s it’s other people’s understanding of it is different I find my experiences are.

    Ruth 43:06

    It’s just ignorance and not in a negative, bad way. Like they’re ignorant about fatigue and stroke. And why would they know about fatigue and stroke? You know, fair enough, better they don’t ever know what that’s like. But if they want to be less ignorant, they can just read a little bit about it. Someone just do a Google search and you’ll find enough information to explain what neurological fatigue is.

    Bill 43:31

    Lights used to make my fatigue terrible if I’m sitting on the couch, you know, watching some TV, I cannot have the lights over my head. Because it just makes me suffer. I can’t do it. It hurts my brain. And people don’t understand when you explain to them that my brain is hurting. How? How is it hurting me? How is that even possible? But it does hurt I don’t know how.

    Ruth 43:58

    Yeah, it’s like a physical pain almost. With me I find people with different energy affects my fatigue, you know, you might come across a bit like you and I barely seen, you know, we don’t know each other very well. But a relaxed kind of person. But there’s some people out there who are hyper and want a lot of energy from you.

    Ruth 44:22

    How are you tell me what you did yesterday. Give me all the details and the information. You know that happy, loud, bubbly people. But I find that exceptionally draining, so I’m more comfortable hanging out with chilled out kind of not quieter people but people who don’t demand as much energy. Does that make sense?

    Bill 44:43

    Yeah, completely. I know exactly what you mean. And those people are the I call them the woo woo people, you know, the ones that just go nuts and they go off all the time. And they’re lovely but.

    Ruth 44:57

    Yeah, exactly. You have to learn to walk away and switch the brain off. You know, and come back refreshed then.

    Bill 45:08

    Yeah. How is your, how you manage now coping with running around after a toddler?

    Motherhood during stroke recovery


    Ruth 45:18
    Yeah, I’m it comes back to support. Again, I’m lucky we have a childminder, who helps to drop Bobby and my little boy to school. And she collects them afterward and brings them home to me a bit later in the afternoon. So that allows me time to get to my physiotherapy and my hydrotherapy.

    Ruth 45:37

    And I do my home exercises here, and I get my nap in. So I’m ready for him when he comes in. And that makes such a difference. If I didn’t have those few hours to prepare, and to get my work done, and to get out and get a walk in fresh air helps with fatigue as well. And so it can be difficult at times.

    Ruth 45:59

    And it makes me feel guilty a lot of the time, because if I didn’t have this, nauro fatigue to be battling every day, I would be engaging with my son a lot more doing more things with him. A lot of the time, I have to almost not ignore him but not engage with him as much as I’d like to do you know, so that I can survive until the evening until my my husband is home. You know, so there’s that battle to deal with as well.

    Ruth 46:28

    Most normal people try not to engage with their kids as well, for various reasons. So you’re just using your health reasons as the reason to not engage at the moment. And it’s pretty legitimate. It’s not, it’s not terrible. I mean, you’re not doing it because you’re a terrible person. It’s legitimate.

    Ruth 46:51

    Exactly. And he’s at the stage now he’s three and a half. He’ll be four in March, that he understands it. Now, you know, he might say to me, are you going to go up for a nap mommy? And you know, he gets it and he knows when I’m, you know, getting a bit tired, Or, you know, he knows Mommy’s going up for a nap now, he knows that. It’s not strange to him.

    Bill 47:18

    Children are very smart. Does he ever asked you about your hand? Have you had a conversation with him about what’s going on there?

    Ruth 47:25

    He does it actually, initially, it definitely has affected him. You know, I’d say about a year, maybe a year and a half ago, he started to get almost obsessed with my arm, you know, and he’d get a bit angry with it. You know, he’d come over and be like, slapping us pinching advising us.

    Ruth 47:48

    You know, I’d be like, stop and he’d be like, your sore hands Mommy, and it would just became a thing to him. So that was something my husband and I were a bit concerned about. You know, he’s clued in he knows little things like, I’m not able to zip off his clothes before we go outside and he gets pissed off.

    Ruth 48:07

    He’s like, come on, zip up my clothes. I know you have a sore handy but come on, you know, there’s things that I can’t do that, you know, all other moms can do. You know, I’ve never been able to pick him up with two hands, for example.

    Ruth 48:22

    And he did go through a phase where I he’d pick me up mommy. So he’s very clued in. He knows that there’s something not right there. So he just gets annoyed and peed off with my hands. And my arm but he’s coming around that now.

    Bill 48:38

    Yeah. When he’s pinching and biting your hand, can you feel it?

    Ruth 48:43

    I can yeah, sensation is wrong. When I say that, you know, like, someone could be hurting my shoulder. But to me, I feel like the pain is on my wrist. So like the pain receptors to the brain are all wrong. I’ll give you an example. Early on in my recovery when I was in my wheelchair.

    Ruth 49:05

    I remember going outside the front door of the hospital and it was raining. And the raindrops hitting my left arm. It was as if every droplet was stabbing me, the pain I was like get me inside quick cover me up. So this sensation, is I can feel but it’s all wrong. If you know what I mean. I’m screaming when he’s pinching and biting me.

    Ruth 49:31

    Shower, me sometimes causes irritation on my left side. And when my wife is gentle, say if I’m driving the car and I have my left hand on the gearstick and she leans over, reaches over to put her hand on my hand, just gently.

    Bill 49:51

    I can’t do that that’s really painful and it does it instinctively and I rip my hand away and appears to be the meanest thing you could possibly do, but she started to understand that it’s not me being mean, it’s seriously painful. But if you grab my hand with force, it doesn’t hurt. It hurts when you do it gently.

    Ruth 50:17

    With me sometimes. And I mean, it sounds crazy. But I have sometimes found myself going, where’s my left arm? I, like I’ve said to Dave, I’m like, Can you see my left arm? I can’t find it. I mean, how crazy is that? But perception of where the limb is has always been a problem.

    Ruth 50:37

    You know, like, I might wake up in the morning, and my arm is under my bum or under my legs. And I wake up going, Oh, God, something is wrong. There’s pain somewhere. But I don’t know. My arm could be up there. It could be down here. Trying to figure out where the arm is in space. It’s quite difficult for me. So people laugh at me when I say Did you see my arm? I can’t find it that’s weird.

    Ruth 51:06

    We went to the beach yesterday in Melbourne, it’s summer at the moment, we had a quite a hot day it was you know, 35 or something. And I sit under a beach umbrella and make sure that I don’t get too much sun because I don’t really enjoy getting sunburned or any of that junk had a swim.

    Bill 51:24

    So I had my shoes off we’re sitting on the sand under the shade it was fine. And then a friend of mine came to the beach, to let me know that he was there. So I went to find him. And I waited without shoes. And because it’s the sand, I can normally walk on the sand fine without shoes.

    Bill 51:41

    Little pebbles of rocks on concrete. Feels like I just stepped on the most jagged rock. And it was the size of the moon. And it just destroys my foot is what it feels like. So I very much avoid it however, I was walking on the sand and it was all fine. And I realized that my feet were getting hot, too hot for me to continue walking on. So I was trying to find a cooler place to step on.

    Bill 52:09

    And when I came home about two hours later, I realized that on my left side, I actually had burnt my foot and had blisters underneath it. Which I didn’t notice at the time, I didn’t feel the pain. Didn’t know that that was burning to the extent that it was causing blisters. So I have that thing as well. Where hot doesn’t register quickly enough. But cold is more painful than hot for me.

    Ruth 52:41

    Yeah, I’m similar enough I’d often have the sink on upstairs and you know I’d get a nice and hot for my good hand. But without realizing it. I might have my left baby finger in the water. And the pain is incredible. And it might just be maybe lukewarm. To me it registers like I’ve just dipped my hand and lava you know, it’s it’s just all the sensations are wrong.

    Bill 53:11

    How do you manage the shower?

    Ruth 53:14

    Yeah, we had to get a walk in shower when I came out of hospital because the previous one we had had the most humongous step. You know, which is very difficult, which was very difficult to would be stepping in and out of that without my footstool.

    Ruth 53:29

    So we basically got a walk-in shower, and we did get a rail put onto the wall. So that’s been a lifesaver. So I depended on that alot in the early days, but it’s there now just for a bit of security. But I don’t need to hold on to it for dear life anymore.

    Bill 53:47

    Yeah, that’s a relief when you don’t have to do that anymore in the shower. I remember that as well. That phase of thinking I’m gonna slip and hit my head, especially with a craniotomy was that was a real concern of mine.

    Ruth 54:01

    Yeah, oh, yeah. We had to get that gripped tile everywhere as well for safety. But then I remember when I was in the rehab hospital, praying for the day to come when I could stand in a shower. You know, I have to sit down like I’m sure you did at some stage as well.

    Ruth 54:21

    You know, to have a shower in one of those horrible shower chairs that are in every hospital. But I just I never thought the day would come that I would be able to stand up and shower at the same time. So I often think that in the shower, that I’m just grateful that I can do this. I genuinely never thought that day would come.

    Bill 54:42

    Adjusting the water and getting in and I know that one of your sides is thinking this feels amazing. This is the perfect temperature. The other side.

    Ruth 54:50

    Yeah, exactly. Yeah, it’s it’s weird because I would say right down the middle of the body. This sensation on the left is just complete dulled compared to the right. So yeah, I do find myself having to adjust, it’s perfect on the right and oww turn it down and turn it off on the left. So it’s a bit of a longer process, having a shower, really trying to balance out the temperature and all of that. But you get used to it.

    Bill 55:20

    Have you ever found yourself sweating on one side of the body and not the other? So I’ve done that where one side of my body is perspiring, usually, I think it was my left side was perspiring and my right side wasn’t. interesting.

    Ruth 55:35

    No, I never, I wasn’t aware of that. But I look out for that now. Like with my, feet, for example, my left foot, which is the affected side, like, I mean, it can be like a block of ice, compared to my right foot. And that could be roasting hot. So there’s temperature can be very different. And same with my arms, like at the minute, it’s quite cool to do in the room. And my left arm is freezing, whereas my right arm is normal, you know, but it’s different.

    The hardest part of the journey for Ruth Carroll

    Bill 56:06

    That’s so strange. I’m just aware of coming up the time. And I want to ask you what the hardest part of your journey has been so far.

    Ruth 56:18

    I would say, Bobby, and missing those seven months and coming home to a seven-month-old baby. And just knowing when I was in hospital, that my newborn baby is at home and that I wasn’t at home with him. Even though like, you know, he was bought into me in my hospital bed for a few minutes. It wasn’t things so that was definitely the hardest. out of everything. I had to take paralysis and brain surgery over that.

    Ruth 56:45

    Wow, and did you seek out counseling and support for coming to terms with the types of issues that you had? Because that’s not what you expected? until, you know, you’re nine months into your pregnancy? Everything, you know, this is what’s going to happen when I give birth. And that’s what’s gonna happen when we come home. And this is how it’s all gonna go. And then that was all gone. Did you find you needed to get help to come to terms with that?

    Ruth 57:17

    In the I didn’t find I needed help. But I was advised to get help. When I was in the rehab hospital. They referred me to a company called headway. And it’s basically they I don’t know, what do you have them in Australia? I don’t know. Yeah, so they’re great. They basically offer all the different services for anyone with a brain injury in Ireland. So I was referred to them.

    Ruth 57:42

    And I did see and I still am seeing fabulous lady there. She’s a psychologist. So she’s great initially, three Irish thing. I was like, No, I’m grand, I don’t need to go talk to anyone. But I totally see the benefits of therapy now of sitting down and just talking about how I’m feeling.

    Ruth 58:05

    And as you said, there, you know, what I expected life would be like after having a baby versus the reality of what it is. So it’s beneficial. So I know, initially, I was kind of in there going, Oh, talk about how I’m feeling I hate this. But now I actually look forward to going in and just talking, you know, you come out feeling much lighter.

    Ruth 58:27

    And there’s also kind of a group session that we go to, in their cognitive behavioral therapy, I think it’s called. And that’s great. You’re sitting in a room with people, everyone in there has been through the exact same, you know, experiences as myself. So we literally just bounce ideas off each other. And that’s, I find that a lot more helpful and impactful, really than one on one. But it’s great to have that service here in Ireland.

    Ruth 58:59

    I was in counseling, I think, at day 10 or something like that. But I had a good, track record of being in counseling, I’m the kind of guy who I don’t do well with not resolving things in my mind. So not that everything needs to be resolved. But I need to at least turn the cogs of the discussion on and get another perspective and express my perspective in a way that it doesn’t get judged, etc.

    Bill 59:32

    And I would recommend to everybody who has thought about it to just do it and it’s not about going and solving a particular issue or problem. It’s just about going there. And then whatever it comes from it because you don’t ever really know what you’re going to get from it. Something just comes up and you realize, Oh, I didn’t think I was gonna talk about that or I didn’t understand that or to learn that.

    Ruth 1:00:00

    It helps with your awareness. I often find myself going Oh, yeah, I wasn’t aware of that. No, I didn’t see that. I didn’t understand that, but I do now. It’s great. It’s very therapeutic to me. But yeah, it’s something I would really recommend anyone to do as well.

    Supporting stroke survivors


    Ruth 1:00:19
    Yeah, I also support stroke survivors through coaching. And some people, all they want to do is have their questions answered. So they, they’ll send me, you know, three, four or five questions. And all I’ll do is answer those questions, whether it’s me in a video chat scenario, whether it’s one on one or via zoom like we are now, or whether it’s just via a message through an app or whatever.

    Bill 1:00:48

    That ability for a stroke survivor to answer their questions rather than going and asking that question of a doctor really changes the game because they’re not asking me medical questions. I’m not responding to medical questions. I’m responding to personal experience questions related to exactly what their experience is.

    Ruth 1:01:14

    That’s what I was just thinking, I have two good friends who have had strokes as well, who I met during the stroke journey. And, you know, they’re the best I often was just sent a message God has this happened to you? And we kind of bitch with each other.

    Ruth 1:01:29

    That happened to me, how did you handle it? And that’s actually the best way to get advice I find. And you can be knowing that someone has experienced what you have experienced. And I find that very comforting. So I talk and I engage with those, those two friends of mine. Alas,

    Bill 1:01:52

    that sounds short talk. But it sounds like why you jumped at the chance to be on the podcast when I sent you a request?

    Ruth 1:02:02

    Absolutely, yeah. As I said earlier, it’s if you can help one person I often think of someone being in hospital upset, feeling afraid and alone. Like how amazing would it be for someone out to listen to you and I talking here? You know, it would have to give hope to the person. So I think it can’t be that.

    Ruth 1:02:25

    And it does. Ruth, I get messages every day. And it gets downloaded at least 3000 times a month, this podcast now. So it reaches a lot of people, a lot of people listen. And you would think that after 130 episodes that they will starting to sound the same. They’re not every episode is different, even though we’re talking about stroke all the time, because every human is different.

    Bill 1:02:50

    Every lesson that I’ve learned, has been learned in a different way, for different reasons. So I think, this is really an ideal way. And we’re blessed to have a technology that wasn’t available even 10 years ago, and five years ago, nobody really paid attention to it. And that’s when I started my podcast.

    Bill 1:03:13

    It’s been about five years. At the beginning of the episodes were few and far between because I was unwell. But in the last five years, there’s at least another three or four podcasts related to stroke that I’m aware of. And, some people have told me that they were like you are very early stages of stroke lying down on a hospital bed or even at home and googling stroke podcast, and then bang, they come up. And their prayers have been answered because all of a sudden, they start to feel like you and I feel which is okay, I’m not alone. And people understand me.

    Ruth 1:03:54

    Yeah, I wish I had found you in this podcast in the early days, I could totally see the benefit that would have been so it’s brilliant. fairplay to you for doing these podcasts. It’s great.

    Ruth 1:04:05

    Thank you for being a guest on the recovery after stroke podcast. I really appreciate it. I know you want to connect with people on Instagram so what is your Instagram handle? I’m gonna of course put it in the show notes for people to find easily but where would people find you?

    Ruth 1:04:23

    Yeah, so my Instagram account is Ruthie_Carroll84

    Bill 1:04:31

    Ruthie_Carroll84.

    Ruth 1:04:35

    Yeah, that’s exactly it.

    Bill 1:04:38

    All the best on an amazing ongoing recovery. Enjoy your family and give yourself heaps of time to get better. Thanks so much for being on the podcast.

    Ruth 1:04:50

    Thank you Bill.

    Intro 1:04:54

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:05:04

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

    Intro 1:05:21

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

    Intro 1:05:44

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

    Intro 1:05:59

    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 called triple zero if in Australia or your local emergency number immediately for emergency assistance.

    Intro 1:06:20

    Or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information and our content we did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

    Intro 1:06:36

    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 Losing Your Independence After Stroke – Ruth Carroll appeared first on Recovery After Stroke.

    1 hr 7 min
  • Cryptogenic Stroke – Andy Dobinson

    Andy Dobinson is an ultra-marathon runner and an endurance bicycle rider who experienced a cryptogenic stroke

    Socials:

    www.instagram.com/andyd2574/
    www.instagram.com/andy_stroke_of_luck/

    Highlights:

    00:55 Introduction

    03:17 The stroke symptoms
    09:38 Andy Dobinson was fit but not healthy
    17:29 The first few weeks after stroke
    21:39 Underlying cause of depression
    31:02 Fear of demonstrating failure
    40:09 What a stroke can give
    44::08 The brain, the heart, and the gut.
    53:28 The mountain analogy
    1:01:48 You’re not alone

    Transcription:

    Andy 0:00

    Yes, I did. And I was kind of wracked with guilt. Although the stroke wasn’t quite well, I thought, have I caused the stroke? It was a cryptogenic stroke. So we have no idea why it happened. It was a massive clot at the back of my head and affected both sides of my body.

    Andy 0:14

    So the conversations we had were will I ever be the same? And how can I work again? Can we work as a team? And you know, I remember thinking to myself, I’m not the guy she married will she want to split, which she was mortified that like oh my God no!

    Intro 0:42

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

    Introduction

    Bill 0:55

    Bill from recoveryafterstroke.com. This is Episode 130. And my guest today is Andy Dobinson, and he is an ultra-marathon runner and an endurance cyclist who experienced a cryptogenic stroke in 2017.

    Bill 1:10

    Now before we get started, you may notice that the audio of this episode is not that amazing, and this is due to technical difficulties we had with the zoom connection between Australia and the United Kingdom.

    Bill 1:22

    I’ve done my best to remove the background noise and tried hard to level out the volume. But the sound quality is far from perfect. I ask you though to persevere as this interview will give you an insight into how important mindset is during stroke recovery.

    Bill 1:39

    Also, if you ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:49

    I too am a three times stroke survivor and I’ve built for you what I was missing when I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 2:00

    Support packages give you access to a variety of tools 24 hours a day, seven days a week so that you can also work on other areas of show recovery, like adjusting to your new normal, even managing the grief that you may be feeling for your former self.

    Bill 2:15

    With tailored support available from $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you, you will get the first seven days free as well as a 30-day money-back guarantee no questions asked.

    Bill 2:35

    As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. You won’t cost you anything for the first seven days. And you will get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. Now it’s on with the show.

    Bill 3:10

    Andy Dobinson, welcome to the podcast.

    Andy 3:13

    Thank you very much Bill. Good to meet you.

    The Cryptogenic Stroke symptoms


    Bill 3:17
    Yeah my pleasure. Good to meet you too. Tell me a little bit about what happened to you?

    Bill 3:23

    Oh my goodness. It was quarter to five in the afternoon. I remember it well on the 9th of February 2017. I was sitting right here because I work from home. And I was on a conference call. And literally out of the blue with no warning nor precursor, no symptoms, nothing at all.

    Andy 3:51

    That was if somebody had them lit a blowtorch at the back of my head and pressed every single pin into the back of my head and instantly the beads of sweat appeared and started dripping onto the desk. And then you see what happened to me at that time I didn’t have a clue, I didn’t know.

    Andy 4:14

    So I was on a conference call. So I put myself on mute because I thought it would be very tricky to dial off the conference call. Then I started feeling a bit oh my goodness, I don’t feel very good.

    Andy 4:26

    So you know you do the usual, you start with Google dizziness and leaning to the left. And then it came up with this thing called peripheral vertigo. So I thought right, that’s it. I have peripheral vertigo.

    Andy 4:42

    I’m wearing an earpiece I must have an ear infection of some sort. What to do? What to do? Now I’ve started feeling quite confused and cloudy and just this pain is intense pain paracetamol, nurofen, so I stood up, and I just thought I was holding on to my desk swaying about thinking, what is going on?

    Andy 5:08

    And someone is still on the call, went downstairs and by the time I’ve taken the paracetamol and dropped to the bottom of the stairs, I couldn’t walk. So I kind of climed up the stairs. And by this time I started thinking, a bit concerned here.

    Andy 5:26

    So luckily the call have finished and I’ve plucked my earpiece and throw them in the office then I was leaning against the wall. I thought I’m going to go in lie down, because I was starting to feel a bit scared. I was by myself at the time.

    Andy 5:39

    Then I was leaning against the wall because I was on my own two feet, but I was really unsteady and I laid down not knowing that apparently lying down flat can help recovery, I didn’t know that at the time.

    Andy 5:52

    And then I rang my wife and I said, Nikki, I don’t feel too good. She said what’s wrong? I think I’ve got a migraine, she went you never get migraines. You’ve been working too hard, I just lie there. I’m going off my fitness class, I’ll see you at six o’clock.

    Andy 6:09

    And I’ve drifted off to sleep luckily but feeling a bit funky is the best way I can describe it. Confused, scared, clouded. Next thing I know, I hear this voice Andy it’s me where are you? I said lying on the bed.

    Andy 6:26

    And as my wife opened the doors, her words were, oh my god, when she said I look gray. And we still don’t know what the hell was going on. And she flipped the lights on and I didn’t react to it.

    Andy 6:42

    So she thought that’s not a migraine he’s not reactive to the light. So she says, right. And she’d actually seen the FAST acronym on Facebook. So she went look, I don’t know if this is a stroke but let’s just double check so I swung my legs off the desk.

    Andy 7:02

    And she said say chicken soup. And I had a sticky mouth and I couldn’t talk properly. And I was internally thinking, What’s happening here? She said raise your arms, and I was a bit lopsided and she said I think we need to get an ambulance.

    Andy 7:18

    And I was like, No, no, no, it’s fine, I’ll be fine. And I don’t wanna be a burden on anybody. So I wouldn’t allow a 999, so that was a number in the UK 111, which is advice. And based on what my wife said, he said I think we need to get you an ambulance.

    Andy 7:38

    So these two big paramedics arrived and came in and hooked me up to all sorts and the words were “not the best but it’s not the worst”, but I think we need to get to the hospital. So maybe I may have tried to get up, but I couldn’t walk that was it, I couldn’t walk. So I was like this across two guys and dragging my feet along the ground and in the ambulance.

    Bill 8:03

    And that was it was getting late to the hospital screaming. And next thing you see these faces looking down on you. And that was the start of them trying to work out what happened and it took them over a day two establish it was a stroke they thought it was chronic fatigue.

    Andy 8:23

    And you know, they go through morphine, which was just crazy, and horrendous sickness and they just didn’t know what was going on. And so they put me to the critical illness unit, and I was writhing about, and being sick, just beyond scared.

    Andy 8:46

    Then they give you a lumbar puncture, which is the most unpleasant thing in the world. And then they said okay you got a lumbar puncture, just lay there and get comfy and I felt like, I can’t walk where the hell am I gonna go?

    Andy 9:02

    And then an MRI. And that was still we don’t know what’s happened. And it wasn’t until five o’clock the next day to give me a CT scan. And I remember being in a wheelchair, just being stick. There’s a junior doctor walking up to me and like Mr. Dobinson. I was like yeah? Okay, so you had a stroke. I’m like, what? And it was just like my world ended.

    Andy Dobinson was fit but not healthy


    Bill 9:38
    What kind of lifestyle were you leading before this episode in your life? What type of bloke were you? How did you live your life?

    Bill 9:51

    I was fit. But I don’t think I was healthy, which I’ve now learned because I was a fanatical cyclist where I would do, my speciality was 24-hour bike races. And I would do 250 to 400 mile.

    Bill 10:12

    Hang on a sec 24-hours straight?

    Bill 10:17

    Yeah, yeah. So, example, I did a mountain bike race from 10 o’clock on Saturday morning, you finish at 10 o’clock on Sunday morning, and you just go round and round. So I did quite a lot of the 24 hour races, and I used to do big endurance race, like 2, 3, 400 miles.

    Andy 10:42

    And I did a lot of team trailers. So I love cycling and I just started trail running which has kind of become a passion. But yeah, I was hugely active, hugely active, but was I healthy? I don’t know.

    Bill 11:00

    How did you get to the point where you, I’ve got a bike, and I’ve always had a bike. And one day, I wake up in the morning, and I go for a ride, it takes about an hour, and then I come home and I’ll put the bike back. How do you go from riding the bike like that to eventually getting to the point where you’re riding it for 24 hours?

    Bill 11:20

    Like did that just happen in your head? One day, I’m gonna do this 24 hour thing? Or is it a slow burn? And then eventually, you look back one day and you go, Oh, my God, I just ride my bike for 24 hours.

    Bill 11:33

    I think it’s kind of in you. I’ve always loved the challenge, love the challenge. And I’ve always, if somebody said to me, that can’t be done, I’ve always thought okay, I’ll give it a try.

    Andy 11:48

    But I’ve always been kind of, I like the really challenging stuff. And you know, a 50, 60 mile bike ride was the norm on a Sunday 24 hours. And I think I just thought you know what, I’m going to give this a try. And I went and tried one is because it’s a team, and I thought I think I might try this myself.

    Andy 12:09

    And it’s actually a hugely lonely thing to do. You’re on a bike by yourself for 24 hours. But then once you’ve done one, you immediately say to yourself, I am never doing that again in my life. And then the next day you think, when is the next one becomes quite addictive.

    Bill 12:28

    Tell me about that day. Tell me about that entire day. Now, for stroke survivors. The reason why I want to go into this is because it’s gonna give us an insight into your mindset.

    Bill 12:40

    And I’m really intrigued about that. But tell me about that day you wake up in the morning, you jump on the bike at 10 o’clock? And how many times do you stop? How do you go to the loo? How do you eat, what happens?

    Bill 12:55

    Usually, it’s a lap event. So I’ll give you an example of a one that I’ve won a couple of times, it was actually a race circuit. So you can just ride around the race circuit, it makes it even more boring, and mind numbing actually, you come through every single lap.

    Andy 13:15

    So I would say I’m going to lay for two hours, then I’m going to come in for 20 minute, 10 minutes, stop, hit stop change of clothes, toilet, food, out which becomes a challenge in itself, because you’ve got a pit crew the stall, food, comfort chair, and you could be in the depths of the night in Scotland, that’s where I live.

    Andy 13:39

    And wonder where I could get enough water It was freezing. You’re coming in at three, four o’clock in the morning, we’ve got the sleeping bag, comfy bed, tent with all the pit crew sleeping and the challenges coming in and then getting yourself back in the saddle.

    Andy 13:59

    And I always have this goal of I want to achieve so many miles I want to achieve so much elevation and by sitting in a chair in the pit crew, you’re not going to do that. So it’s more mental than physical. And I think anybody’s got it in them physically, mentally. And definitely mentally.

    Bill 14:23

    I imagined myself on a bike. And I’ve never had the idea to ride for 24-hours but I imagined myself on a bike and at some point your legs start to hurt. And for you, how long does it take before your legs start to hurt and for how many hours are you riding with your legs hurting?

    Bill 14:48

    About 18 hours that you’re hurting. But I think this is why I enjoy Ultra Trail Marathon running which I’ve become since my store. So now I run 50 mile trail marathon and that’s since my stroke so I can be running for 13 hours.

    Andy 15:09

    So I’m lucky that I’m able to do this kind of stuff post stroke. But it’s still in me something I’m wired a certain way, I think that I loved. I don’t love the pain, because that sounds really odd, but I love challenging my mind and my body to say at the end of it I did it. It’s even more special now that I had a stroke.

    Bill 15:43

    Is it egotistical?

    Bill 15:45

    Absolutely. Totally. Because at the end of it, you put a post on facebook I did a 24 hour race, and you’re on this place, and you go, Oh, I’m fantastic. Which is what I’ve searched for pre-stroke but post-stroke is completely different. Totally different.

    Bill 16:05

    Tell me.

    Bill 16:05

    There’s not one bit of ego, it is so personal to me now. So give you an example. Pre-stroke, I would choose times, speeds, power numbers, elevation, mileage, were in September, I struggled to start laying 50 mile ultra trail marathon a couldn’t walk in February 2017.

    Andy 16:32

    And I don’t care how many people beat me, I don’t care. I stopped for photographs and stop when I got tired. I stopped to rest, stop for feed stations. And it was the adventure and the journey. I believe that so much I’ve got a memorial tattoo on my ribs about the journey and adventure with a stroke survivor symbol I’m passionate about that now.

    Andy 16:58

    But you know, you think I’ll do it in 12 hours, or 12 hours comes into make it 13 they might do it in 14, I don’t care. What I care about is getting to the end. And that is so much different to try and cheers, please and cheese there. I don’t care about that anymore. I’ve got nothing to prove.

    The first few weeks for Andy Dobinson after stroke


    Bill 17:30
    The way you look to me is that most people wouldn’t know that you’ve had a stroke, but what was it like in those first few weeks of stroke? How bad did it get?

    Bill 17:45

    I’ve never, ever experienced, and I hope I never experienced again. And I hope nobody experiences the darkness of a stroke, it was horrendous, horrendous. And I called my stroke phase one, phase two. So you know from being a 24 hour cyclist to sitting on a hospital bed and getting knife, a fork, and a hairbrush put infront of me and say, show me that you can feed yourself.

    Intro 18:17

    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 18:34

    Doctors will explain things that obviously you’ve never had a strike 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 18:57

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

    Bill 19:26

    Oh my God it’s horrendous. So a week after I got back from hospital, I was told my dad had acute myeloid leukemia and he was gonna die. So I just had a stroke, I’m recovering, I’m learning to walke, and learning to be independent.

    Andy 19:46

    And I thought my dad’s gonna die and all I could think about is when I’m gonna carry his coffin. I don’t know what happened but by May. I could walk I was lucky enough to carry his coffin but the day after his funeral, it was like my body and mindset, like enough is enough. And I went, I couldn’t walk again.

    Andy 20:02

    And I was back in hospital back in hydrotherapy back in physiotherapy, and I started 18 months of counseling, depression tablets, which I labeled as anxiety tablets, because I wouldn’t take depression tablets, I haven’t got depressed it was horrible. And that was the hardest two years of my life, the darkness you experience when I ride and in marathon is nothing compared to darkness in stroke. And nobody sees that because physically I look okay.

    Bill 20:45

    For sure stroke makes it possible for you to relate to people who, quote unquote, have mental health issues. The question though is, you were depressed? I know, the stroke had a role to play there.

    The underlying cause of depression of Andy Dobinson

    Bill 21:01

    But what’s the underlying cause of the depression at the time? Have you been able to reflect on that? I know it happened, sort of during the process of stroke and all that kind of stuff. But it’s not the stroke that did it. There’s an underlying, cause it’s something else that’s making you depressed. What was it? Do you feel that was creating emotions that you described as depression?

    Andy 21:29

    Yeah, I think there’s an element of dealing with my dad’s death, because I had a very complicated relationship with him really complicated, which I think fed the pre-stroke craving for (inaudible). But that’s a whole different conversation.

    Andy 21:45

    But what probably fed it, was that in my mind, and I was weak, I wasn’t good enough, I was disabled, I was brain damaged, I wasn’t the guy, my wife had married. And I struggled with, confidence, and cognitive thought.

    Andy 22:10

    And I just thought that I’m a poorer version of what I was and it really locked me. And I didn’t like, I didn’t like who I was right now who I was, who I am. And now I can see the stroke the best thing that ever happened to me, but it’s taken a long time to say that.

    Bill 22:31

    Interesting. Okay, so I say that, and I’ve interviewed many, many people that say that, and they’re all in different various levels of recovery. They have different physical symptoms that have deficits, but they can say that.

    Bill 22:54

    How do you get to the point where you know that you didn’t like who you were, or you didn’t like parts of yourself? What happens where one day you go, I don’t like that anymore about me, or who I was or how I behaved, what’s the aha moment? How does that happen?

    Bill 23:11

    I don’t think there’s been like an epiphany or an aha moment, I think my counselor, Luise took the lid off the box and help me verbalize everything that I kept inside, everything needs to be in boxes for me mostly in boxes. Still has to be but I’m learning to leave those boxes open.

    Andy 23:42

    And if something falls out the box, I throw away but but she made me question what I used to do and what my wife’s been through without my wife (inaudible) but she questions, the whys, how, would you think, what about, and I’m still going through that process.

    Andy 24:07

    So you know, I’m not saying that look how I am and I’m fine. You never recover from the stroke, you adapt and you live with it. And you have reminders every day some tablets morning and night, I still got physical things I live with, I’ve got mental challenges, my thought process gets really mumbled at times but, what made me realize is that maybe the way that I’ve rewired myself and I’ve always had this visual picture that I need to feel right to get the wiring right in my head.

    Andy 24:44

    And I try to live by this place “Be kind to yourself”. If I’m kind to me, I want to be kind to other people and I’ve developed a more thoughtful process where I could be really selfish before, quite short.

    Andy 25:02

    And it’s really hard to explain because there hasn’t been an aha moment, it’s kind of a developing this more rounded pebble that used to be quite a jagged rock. And I’m just a bit more yeah I’ll just kind of move on. But I’m still hugely anxious.

    Bill 25:25

    Let me explain how I feel about what you just said, because I relate to that. Being somebody that’s growing up in Australia, and our culture is very similar to the culture in Glasgow. We blokes don’t talk about problems, feelings, that type of thing. We take the weight of the world on our shoulders, and then we blame the world for it, like we’re the ones being impacted by everybody else.

    Bill 25:55

    But it’s not really everybody else. It’s our own thoughts and processes. And then I realized after the stroke that what I wanted to do was, if I did die, I wanted to just make it so that my kids didn’t think I was a complete idiot afterwards, and that, you know, dad was a good guy.

    Bill 26:15

    And he taught us a lot, and we respect him and all that kind of stuff. Because before the stroke, I didn’t feel that, but I never contemplated that, because I never needed to, it never entered my mind that I might die at 37. But then afterwards, I contemplated that and the goal of having my kids look at their dad in a positive light, in remembrance of their dad, not just because he was dead, but because he really was a good guy is what set in motion, all the other changes that needed to happen that I didn’t know they needed to happen.

    Bill 26:59

    And it’s like that bike ride that you do, or that run that you start, you know, where the goal is, you don’t know, on the track, what are the obstacles are going to be? Yeah, if you have to think about all those obstacles, you’re never going to solve those problems, because the obstacles are potentially endless.

    Bill 27:18

    But what you actually do get is you get problems that pop up that you were unaware of, and with the help of somebody like a counselor, psychologist, coach, whatever, they give you the permission to open the box. And when they open the box, and something comes out, you address it when it comes out.

    Bill 27:42

    And once it’s addressed, you close the box, and then it’s kind of done. It’s been addressed. It might not be solved totally. But the fact that it was addressed, kind of enables for that hurdle to just be moved beyond and then working towards the next hurdle, which you’re completely not expecting the next hurdle again.

    Bill 28:06

    But then it just pops up. Does that resonate with you? That’s how I got to stroke’s, the best thing that ever happened to me, it just happened one day. But when I look at all the things that I addressed, there was 10 specific key things that I addressed that other stroke survivors who say that also addressed, but they didn’t set out to address them, they set out to be a better version of themselves in the future.

    Bill 28:37

    Yes. I can relate to that, because I think I am a beter version. It’s a really difficult one, because I think I was a nice guy before my stroke. Otherwise, why would my wife had married me? But I just think I’m a much better version of myself, for example I’ve learned to open up and allow people in.

    Andy 29:05

    So pre-stroke it would be a case of No I’m find I’ll deal with that, I don’t need your help, where now, I’ve got no qualms about you know what I need some help. And hat’s how my counseling started, I broke broke down, and my wife said, we need to get your help.

    Andy 29:22

    And I rang the counselor up and I said, help me, I need help. I’ve never done that before in my life, ever. But now, I don’t have a problem showing my emotions letting people know you have a fail, ask them for help, letting people in. And I think I’m a lot more considerate in my approach.

    Andy 29:43

    And yes, I have opinions where instead of giving them and saying this as the correct way I kind of offer just this is what I think. You know, do with it what you want, but this is what I think, and I’ve found now that people oftenly, not ask for my advice, but I’ve probably got quite a conservative approach because my attitude now is, if I can deal with the stroke, and survive a stroke and come out a positive human being.

    Andy 30:23

    I can deal with anything so if somebody comes to me with a problem always in the back of my mind going it isn’t a stroke. So it’s not as bad as a stroke. So I’ve got a kind of coping mechanism for lots and lots of stuff. So you have a system to go through. And, you know, my box and my visualization, and muddy, murky, water and all these systems in my mind. It’s just made me a more and not sensible but level headed.

    Fear of demonstrating failure

    Bill 31:02

    What were you afraid of in the past, when somebody offered you help? Or when people were trying to get in to your psyche? Or to your emotional side? What were you afraid of? Why was this such a barrier around letting people in?

    Bill 31:20

    Demonstrating failure, I didn’t want anybody to know that I ever fail or I needed, it was quite a northeastern mindset. My dad asume where you’re only a man, if you’re strong and dependable, and you don’t cry, you don’t show your feelings, and you’re not a failure. You know what? I do all that stuff now. And I’m fine with that. But I think the overriding thing was that I was petrified of anybody thinking I was a failure.

    Bill 31:57

    And where did you get the definition of failure? You got it from your dad, who was afraid of anyone thinking that he was a failure. In fact, the opposite is true when you cry, when you express your emotions, when you apologize for acting like an idiot. When you can just experience raw emotions, for just a short amount of time.

    Bill 32:21

    You’re actually the opposite of a failure, you’re a winner. Because that’s what life is supposed to be these ridiculous ideas of what winning, and losing, failing, and succeeding are, come from a stupid place.

    Bill 32:43

    Some people, well not some people with me, I would put myself under so much pressure to perform, whether that be at work, my bike, or anything, where in the grand scheme of things. There’s far, far more important things and you know, what’s important to me now is time with my wife, time doing things that I like and I love love for the right reasons.

    Andy 33:12

    And like I said before, I don’t have to prove anything to anybody. Some people say that you’ve won ultramarathons now, will you still do it? No I don’t. I do this stuff for the absolute passion and love that I have for it. I like putting stuff to me but I still can’t get rid of the fact that I had a stroke prove that I can still challenge myself. But if I don’t do it one day, and I’m gonna say, you know what, I’m not gonna finish this race this ride this run. It doesn’t matter at all.

    Bill 33:48

    Yeah, I got to that point of being able to get to a stage where I know, my body’s saying rest, relax, don’t do this anymore. And that was something that I hadn’t been able to do. In the past, I had to push through and I had to find a way. And I used to also do it begrudgingly, you know, those difficult things that I knew that I didn’t want to do, but I was still doing, I still do begrudgingly.

    Bill 34:21

    And I used to find myself getting cranky at the world around me for you know, supposedly making me do these things that I didn’t want to do. And what what I realized was that I was focusing on the problem all the time.

    Bill 34:36

    I was focusing on the problem, the amount of problems, how many problems there were the impossibility of solving the problems. I focused all my time on all that stuff. And then at some point, I had to focus on solutions because I had you know, day, the day before stroke, I had a million problems, the day after stroke, I had 20 million problems.

    Bill 34:58

    There was no hope in being able to put all my effort into focusing on solutions. And that is kind of what moved me through that whole pushing through barriers that I didn’t want to push through. Because there was no enjoyment out of it. Forget about pushing through a barrier of an ultra marathon.

    Bill 35:21

    I know at the end for you, there’s some kind of a pleasurable experience from it. But for me, I wasn’t doing things that I loved. I was doing things that I hated for other people. And it was terrible. So where are you at with other parts of your life? Because at some point, I imagine you had to go back to work, you had to do all those things. How did that go? But before you answer that, let me just go and get a tissue for a sec.

    Bill 36:31

    Yes, so straight after my stroke, I was obviously off work. And my time was spent walking 30 seconds on a treadmill every day and Bosu balls and all that kind of stuff. But I went back to work far too quickly. Because I still had a bit of a pre-stroke mindset where I need to demonstrate I’m okay.

    Andy 36:57

    When I went back and graduated, then I worked in Vodafone at the time, who were hugely supportive they were really, really good. And I kind of changed roles. And I went back and I graduated the term, but I’ve never experienced higher (inaudble) the mental drain was huge.

    Andy 37:16

    But then in the May when my dad passed away, and I feel I just crumble beyond belief, it was off work for a month. And, that’s when it hit me where I thought, I probably rushed the first part of my recovery. This time, I’m going to really get it right. But even now, I’ve got to be very, very conscious for tiredness. And I manage my tiredness very, very cleverly, because I recognize it now.

    Andy 37:45

    And like you said, If I’m tired, I stop, I don’t push through anything, I stop.

    Andy 37:51

    I still work in Telecom. So it’s hugely demanding on laptops and projects and costings and all that kind of stuff. But I’ve learned now that I have to work in a different way. And if I don’t finish something, that’s fine. And if I do, great, that’s a win. If I needed to take a rest my goodness, I will take a rest.

    Andy 38:19

    But the rest of my life is, as I want it now. You know, I don’t do anything for the sake of doing it. I don’t do anything because I feel I should. If I want to do it, I’ll do it, if I don’t I don’t. And my life is hugely different now, because it’s not this I must ride my bike, I must do this, I must prove x, y and z. And me and my wife are so much happier for it as well, but I’ve learned how to read the signs because a stroke survivor has signs all the time. And if you ignore them. If I ignore the signs I’m game over for a few days I’m done.

    Bill 39:14

    Yeah, I’m the same. You can create more suffering during stroke recovery by being as stupid as you were before the stroke. And the stroke causes enough pain and suffering and problems just on its own. You exacerbating that is not helpful in any way, shape or form.

    Bill 39:42

    And it’s really important that you take responsibility for the part of the suffering that you’re creating. And stop being a martyr and stop being somebody who needs to have the upper hand on stroke. You’re not going to get it. It’s not possible, stoke is going to win every single one of those battles. And I think you can work with stroke.

    What a stroke can give


    Bill 40:09
    And I think that’s one of the gifts that stroke gives is that it gives a lot of information about when it’s time to stop. And when it’s time to rest. Where before mind over matter, we push through the body’s pains. We push through the biting signals and information that it’s telling us and we just get to the point of feeling really crap for a certain amount of days.

    Bill 40:35

    And we haven’t become aware of how we got to that point. But if we paid attention, there was plenty of information available, that concept that we’re talking about is still bizarre that I’m speaking to you about it, because you still do push through pain barriers, and you still do things that most people don’t do, even though if you decide to stop an ultra marathon race at mile 30 you’ve still run 30 bloody miles to get there.

    Bill 41:08

    Yeah, I know it’s quite, it’s quite an odd concept. And some people see they do what? I’ll follow you around? But again, it kinda goes back to the mindset I’ve now got, I’ve got no agenda, no agenda whatsoever.

    Bill 41:29

    It’s like Forrest Gump. Just start running.

    Bill 41:32

    Yeah, exactly. Do you know why it’s really quite liberating. It’s fantastic. Because you could put your stuff on an oil, and I just kind of roll with it. It’s fun. It’s great I’ve got from last, 1st, 7th, a million, doesn’t really matter. But that’s kind of how I approach everything now.

    Andy 41:55

    Strokes, kind of give me this helicopter view. Because I’m still quite anxious. I’m hugely anxious, right. And I’ve got loads of these mental processes. And I can be quite obsessive, and useless in making decisions but I’m aware of all this. So, you know, if I obsess about something, it’s like, I can remove myself and go I know I’m doing that.

    Andy 42:20

    But I’ll be fine in a couple of days. So I allow myself to be obsessive about something. And that will just kind of fall away. I’m like oh, my God, I’m obsessing over something. I kind of go I’m watching myself being obsessive. But yeah it’ll pass in a few days.

    Bill 42:35

    Nice. That’s so good. Instead of obsessing, that you’re obsessing. And making it more complicated, the obsession, one part of you says, I’m going to allow that obsession to occur. And when it goes away, it’ll be gone. And that is how I describe to people who I’m helping with stroke recovery, in coaching to do about emotions, like, allow, you observe yourself to be an idiot, let yourself, be an idiot, and then apologize for being an idiot when the time comes.

    Bill 43:06

    And then that way, you’re giving the other person permission in your life to also be an idiot. Because they are normal, and we’re not special, just because we’ve had a stroke, they’re normal, they’re gonna have a bad day. And if you can do the same helicopter view for them, you’re going okay, they’re being an idiot, they’re gonna get over it. And eventually, things will get back to normal. That’s a really good approach.

    Bill 43:27

    I’ve always had a good guy and a bad guy, and pre-stroke, the bad guy ruled everything. So the bad guy comes knocking quite often. But now the good guy has a real voice, most of the time the good guy, I;ve got a real go with this guy. But I allow the good guy to communicate with the bad guy.

    Andy 43:50

    And this might sound like I’ve gotten mental. This is just a really good, I don’t let the bad guy rule me anymore. The good guy negotiate for the bad guy. And I listen to the good guy now but they’re always there they’re never going to go away.

    The brain, the heart, and the gut.

    Bill 44:08

    Let me ask you, if you can identify in your body, which organ does the bad guy reside in?

    Andy 44:19

    Here. (Brain)

    Bill 44:20

    And which organ does the good guy reside in?

    Andy 44:25

    Heart.

    Bill 44:26

    So that is not a coincidence that I said that and that you pointed there the head is a neural network. It has billions of neurons. And it does thinking it does making meaning it does creativity, It does all that sort of stuff.

    Bill 44:46

    The heart is also a neural network. People don’t realize that it has between 30,000 120,000 neurons. It has memory. That’s why you hear that song and you remember a loved one from 10 years ago, or 20 or 30 years ago. And not only is the heart and neural network, that’s where your emotions are.

    Bill 45:09

    That’s where you touch when you say I love you to somebody that’s on the other side of the planet, and you’re doing a zoom call. But your gut is also a neural network, it has the same amount of neurons in it that the cat’s brain has. So it’s a full level of intelligence.

    Bill 45:29

    And when you ask people, if I ask you, where do you take action from? Where do you take action from?

    Andy 45:39

    Depends on who’s talking to me.

    Bill 45:42

    But what makes you move forward? What makes you give you the push to go forward? Most people will point to the action center is that gut, I took gutsy action. And that’s a neural network and dopamine. And a lot of the neurotransmitters that the brain uses actually are created in the gut, the immune system is supported in the gut.

    Bill 46:09

    And if we’ve got a healthy gut, we’ve got a healthy brain, because there’s more ability for the brain to take those neurotransmitters from the gut and use them when they need them.

    Bill 46:19

    Dopamine, serotonin, all that sort of stuff, right? So it’s very interesting that you have identified these good guy and bad guy kind of concept. And that’s how you describe it, but they reside somewhere in your body. And it’s really easy for you to point to them. So when you listen to your heart, your life expands.

    Bill 46:40

    When you listen to your head, you become anxious when you overthink. But your head, really Its job is to analyze things like my heart desires a bike ride your head’s responsibility is how am I going to make that happen? And give me the creative solutions to the problems that my gut is telling me it’s not difficult for me to overcome for me to do this, because the gut is telling you, I’m feeling like there’s knots in my stomach.

    Bill 47:15

    I’m feeling uneasy in my stomach about making this decision, right? And the head’s going, No, don’t worry about that we’ve got solutions, we’ll ride there’ll be a guy at the 30 kilometer mark, or mile mark, who’s gonna give us food he’s going to do this he’s going to do that.

    Bill 47:30

    If something bad goes wrong, you know, we’ll be able to repair that fix that puncture, fix that chain. Whatever the problems that the gut comes up with to stop movement from happening, the head does the solution. So you make business decisions at the head, and at the gut, but the head does the calculations.

    Bill 47:52

    If the numbers work. Then we move forward, if the guts happy, and we solve the guts problems, we move forward. But you don’t make business decisions with the heart, you don’t buy a company because I would love to buy that without looking at the numbers.

    Andy 48:07

    Yeah.

    Bill 48:09

    So this is resonating with you, right? And we’re doing this every day. But sometimes they get the mix, they get the method incorrect. So they use their head to make heart based decisions. And they use the gut to make head based decisions. And they don’t work.

    Bill 48:26

    And when you’re using the head to make decisions of the heart and of the gut, you’re over analyzing, and you’re causing anxiety, and you’re causing inability to move forward. So all of that, that I just said, is to ask you, what do you get anxious about? What does your head make you anxious about? And how do you do anxiety?

    Bill 48:53

    When I get anxious about decision making, that possibly affects other people. And I actually get anxious about general decision making, which stems back to confidence still growing It’s not what it was, which is a different type of confidence I’ve got I’m hugely more confident in some areas than others.

    Andy 49:23

    I get quite obsessively anxious about things could go wrong. And I get OCD kind of anxious about things that just aren’t right and not in the right place I’m anxious about that. It’s quite trivial things that I get anxious about. And then that anxiety turns sort of obsessive OCD kind of, action.

    Bill 49:55

    It kind of does so. Do you give yourself the same Helicopter opportunity when you’re anxious to view yourself being anxious and allow yourself to be anxious, knowing that it’ll pass. Do you do that?

    Bill 50:10

    I try to because I know that if I don’t it will escalate, then it will stick. And it will break the processes I have in my mind. And I need to go through those processes to put things in place for me.

    Andy 50:35

    And it might not be a place for you or my wife or anyone else. But if it fits in that place in my mind, then, you know what that’s okay, it might be the wrong place. But it can live there for a while. And I’ve learned to allow it to live there for a while. But yes, I do take that view, because if I don’t, I don’t know quite where I’ll end up.

    Bill 50:59

    So I asked you specifically so that people listening can go, Ah, maybe I’m not taking the third person view, and I am stuck in the problem, rather than observing the problem. And if you’re stuck in the problem, you’re the problem, you’re causing the problem, you’re making the problem worse.

    Bill 51:18

    If you’re observing yourself being stuck in the problem, you’ve separated yourself at one level, and you’re giving yourself the opportunity to a observe yourself and be being the problem. And as you’re observing yourself, you’re able to pay attention to how stupid it is this problem that you’re potentially creating unnecessarily, but from a good cause, perhaps, but realistically unnecessarily.

    Bill 51:47

    And then, as a curious person observing yourself being stuck in the problem, you can go, how is that serving me? And why am I even doing it? And can I find a way to alleviate the need to do it? Because all you’ve done is create neural patterns and pathways to support that. What are the opposite neural patterns and pathways that you can create, to replace that?

    Andy 52:12

    There’s another thing that goes along side that Bill, for me it’s so pre-stroke, I would focus on the end result. So whatever I’m doing whatever decision is the end result. And that’s all I focus on.

    Andy 52:27

    I’m not able to deal with the gravity of that now, whatever it may be, could be a small journey, big journey, big desicion, whatever. There is an end result. But what I’ll do now is to compliment the potential anxiety and the view I’m taking towards the first little step? Then okay win I’ve done that one, that leads to the second one, it will eventually get me to that big end result that is there but I’m not focusing on that.

    Andy 52:57

    Because you know what? I might not get there this time and if I don’t, I’ve done A, B, C, D, E, and I might just manage F to do. Where before, if I don’t get to Zed the world’s gonna crumble. But if you tie in that step by step by step by step with okay, I’m aware of that. And I’m going to allow that to happen, oh my God that is so liberating it just kinda smoothes things out.

    The mountain analogy

    Bill 53:28

    It’s the mountain analogy that I like to use, it’s like Everest is there. If we try to get to Everest and think about every possible thing that can go wrong to get to Everest, you might as well not even start, but if you set out on a walk, and when you get to Basecamp you’ve achieved all these things that you never knew you could achieve.

    Bill 53:52

    And now you’re at Basecamp. And you reflect on all those new experiences, new solutions that you found new barriers that you push through all these things. If you focus on everything that is better and different about you for just getting to Basecamp then there’s no point, getting to Everest is not necessary.

    Bill 54:12

    Because there’s so many, so much gold and so much beauty in what you’ve already achieved. And now, if you think that Basecamp was really easily doable, take the lessons that you learn that helped you get to Basecamp and just use them on the next journey.

    Bill 54:30

    And allow you to get a little further beyond base camp and a little further up the mountain. Always without the mountain, the peak being the must do. It’s just wouldn’t it be great if I could get there and reflect on all the lessons and the journey and all the amazing things in the path.

    Bill 54:53

    But you know what, as well, I’ve learned and it’s taken me years to get where I am it’s a huge journey is I’ve learned not to fight what it does for me, because you know what? You can’t change a damn thing. I had a stroke, the facts are part of my brain has died and it’s never coming back.

    Andy 55:18

    I can’t change that. So did I accept that at the start? No, do I accept it now? Yes, and things are different. And the minute any one who suffered a stroke can start to may not fully accept that will accept all of that and said, You know what, there’s no point of fighting it because I’ve wasted energy.

    Andy 55:42

    And this goes back to you just got to kind of roll with it because I can’t do anything about it. That I can’t, it’s happened. So what’s the best path to follow instead of this fight, fight, fight, I’ve had a stroke. That’s just a waste of energy. It’s a long time to get there.

    Bill 56:03

    It can, it can take a long time. And it can take a short amount of time, it just depends on who you are, and how willing you are to be flexible now. I’m building a course it’s called 10 steps to brain health for stroke survivors. It’s not really about brain health. But one of the modules that I’ve just done recently is mindset.

    Bill 56:21

    I’ve been planning this course, for four years, I cannot build 10 steps to a course, in 12 months or 18 months or six months, I just don’t have the capacity to do it is going to take as long as it takes. And when it’s ready. Even if it’s in 10 years, it’s going to be valuable because lessons two stroke recovery don’t change. They’re always the same lessons.

    Bill 56:46

    One of the modules is mindset. And with mindset, I really talk about, I try and talk about whose mindset are you? What do you have? Whose mindset are you running? Is it your parents? Is it your teachers? Is it your doctors? Is it your brothers? Is it somebody else’s mindset that has been combined over these years, and you’ve taken on as your own mindset?

    Bill 57:13

    And it’s not serving you and you haven’t become aware of that? Because you just haven’t asked, no one’s asked you the right question about like, whose life? Are you really leading? Are you running? Yeah. And for me, that was one of the big revelations in my life was I realized that I was running fears, anxieties, and all that kind of bullshit from other people. And they came from various parts of my life.

    Bill 57:38

    And now I recognize when I’m running those patterns from other people that they’ve instilled in me. And I stopped a lot sooner than I used to. And I have that awkward conversation with Well, that’s just my dad’s pattern. I don’t need to run that anymore. He ran it because it was useful in the time that he grew up in to get him through a problem that he had.

    Bill 58:01

    And he didn’t realize that he could stop doing that. He just continued doing that. I’m not going to continue doing that till I’m 80. There’s no point there’s no chance. And that’s how I feel like people who are ultra marathon runners, and all this kind of stuff, even you, you’re running somebody else’s mindset to keep a part of it to keep you running to 60 miles, you’re running somebody else’s mindset.

    Bill 58:28

    And that could be the guy that did it before you. And that’s okay, because that’s part of a run that is part of a marathon that is part of an ultra marathon. But that is not part of stroke recovery. That mindset is the correct one for running an ultra marathon. It’s got nothing to do with stroke recovery.

    Bill 58:46

    Because if you keep pushing, and you keep trying to get the 60 mile mark of a stroke, recovery, it’s going to fail, it’s not gonna succeed. The mindset needs to be flexible, and applied to each individual situation of your life. appropriately.

    Andy 59:02

    Yeah. I agree.

    Bill 59:06

    Tell me about when it happened. What was some of those conversations real serious ones that you had with your wife? Did you have them?

    Bill 59:18

    Yes, I did. And I was kind of wracked with guilt. Although the stroke wasn’t my , well I thought, had I caused the stroke? It was a cryptogenic stroke. So we have no idea why happened. It was a massive clot at the back of my head and affected both sides of my body so the conversations we had were, will I ever be the same?

    Andy 59:40

    And can I walk again? Can we work as a team and you know, I remember thinking to myself, I’m not the guy she married will she went to split? Which she was mortified at, like, Oh, my God, no, whoever, whatever you are your still Andy, I love you, and I’m never going anywhere.

    Andy 1:00:03

    And that was like Oh my God thank God for that, I’m not going to be stuck in a home somewhere getting fed. But yeah, there were some pretty harsh conversations. And when you’re in the depths of anxiety and depression, you can be a really nasty person to be around unconsciously.

    Andy 1:00:30

    Because, you know, going on that depression tablets are great, nobody tells you coming off them is the worst thing you’ll ever do in your life. Apart from having a stroke. I was a horrendous person, because it took me about five, six weeks to come off them from that period of time.

    Andy 1:00:47

    At the time, I was horrible, just horrible. And nobody tells you that part. And that was some really brutal conversations about that period of time the person I’ve become. And when it happened, yeah, there’s some quite a life changing conversations you have because you know, there’s an element of you feeling sorry for yourself.

    Andy 1:01:18

    How am I the husband that she had. (inaudible) I’m here struggling to verbalize it. Because it’s just so horrible. I sometimes struggle to get the words out that was just horrible.

    You’re not alone

    Bill 1:01:47

    I really appreciate the way that we’ve had this conversation because you verbalize some things that I can’t verbalize. And the reason why I have podcasts is to give people the opportunity to say all those things about stroke that I want to, but I don’t know how to.

    Bill 1:02:08

    And I find that every person that I interviewed, there’s gold comes out of their mouth, every single episode, this is going to be Episode 130. So if you ever thought you were alone in stroke recovery, if you ever thought that you’re the only one experienced something, just pick up one of those episodes, and listen to it, you’re not going to feel alone anymore, you know, you’re not going to feel weird, strange, different.

    Bill 1:02:34

    And hopefully what that does is that creates an opportunity for people to question everything they’ve ever done or ever been, and in ever thought so that they can start from scratch, and redefine their life and redefine who they are and how they can go about their life, even after they are completely their identities completely tested, change the whatever you want to call it.

    Bill 1:03:05

    And they can’t recognize themselves again, like it’s an opportunity for rebirth. And I say, I say that, from my perspective, and you as a stroke survivor might not be there yet. But one day, I hope that stroke survivors get there, I know that you’re well on your way of redefining who you are, and and completing the rebirth. And that makes me really excited. That makes me really happy to have this conversation with you. Because I think it offers hope for other people.

    Bill 1:03:40

    And you know what Bill, that puts a huge smile on my face. Because you know, I feel hugely privileged to have been able to chat to you and, tell a story. And you know, if one person was gonna listen to this podcast, and it helped one person, that’s a huge tick in the box for me.

    Andy 1:04:01

    Because nobody can write down on paper, the challenge of a stroke, you can’t define that place. And if it helps one person even find a glimmer of hope or get on a slightly different path, you know what? That would make me so happy. And any help that’s offered to anyone that’s going through this is absolute gorgeous.

    Bill 1:04:31

    That’s a beautiful way to end the podcast. Andy, thank you so much for being on the podcast. I really enjoyed our chat.

    Andy 1:04:38

    Thank you very much Bill.

    Intro 1:04:43

    Discover how to heal your brain after stroke, go to recoveryafterstroke.com

    Intro 1:04:53

    Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other animals. visuals, 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 1:05:10

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

    Intro 1:05:23

    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 1:05:38

    Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.

    Intro 1:05:55

    If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be? Call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.

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    The post Cryptogenic Stroke – Andy Dobinson appeared first on Recovery After Stroke.

    1 hr 7 min
  • Changing Perspective After Stroke – Jennifer Chapman

    Jennifer Chapman is recovering from an ischemic stroke which was caused by blood clots that occurred because of a vertebral artery dissection

    Socials:

    www.instagram.com/justcommitcoaching/

    Highlights:

    01:13 Introduction

    03:07 Ischemic stroke caused by Vertebral Artery Dissection
    09:41 Expressing emotions
    13:55 Change of perspective for Jennifer Chapman
    26:21 Meant to do something more
    34:53 Creating the stress
    40:10 Post-stroke deficits
    53:53 Intimacy after Vertebral Artery Dissection
    1:02:39 Nutrition after stroke

    Jennifer 0:00

    Having a stroke for me has changed my perspective in the sense like, yeah, I hope and still want all those things, you know, in 10, 15, 20 years. And I’m also much more focused on today.

    Jennifer 0:12

    You know, the moment we’re in what we’ve got? What’s our goals for tomorrow and this weekend? And so our perspective is different in that regard for sure. I think the scariest thing for me was honestly accepting this new version of me working to find acceptance in this new version of me and because you’re really grieving the old you is what I’ve come to realize.

    Jennifer 0:38

    Like, this may be a better version of me, but it’s taken me you know, two and a half years to get there and I still continue to do daily work on myself and my mindset, to feel confident enough in knowing that that’s who I am now. This is who I am and I am more than okay with it.

    Intro 1:01

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

    Introduction Jennifer Chapman


    Bill 1:13
    Bill from recoveryafterstroke.com. This is Episode 129. And my guest today is Jennifer Chapman. Jennifer didn’t know that she had a vertebral artery dissection that unfortunately created multiple blood clots, which caused an ischemic stroke.

    Bill 1:29

    In this interview, we discuss how her perspective on life has changed since the stroke. Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:44

    I too am a three-time stroke survivor and I have built for you what I was missing. When I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 1:55

    Support packages give you access to a variety of tools 24-hours a day, 7 days a week so that you can also work on other areas of stroke recovery, like adjusting to your new normal, or even managing the grief that you may be feeling for your former self.

    Bill 2:10

    With talent support available from $8.50 per week, or recovery after stroke support packages and bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you, you will get the first seven days free, as well as a 30-day money-back guarantee no questions asked.

    Bill 2:30

    As a bonus, you will also get to face to face zoom support calls with myself to help take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. It won’t cost you anything for the first seven days. And you will get a full refund. If you are not happy after 30 days. You have nothing to lose, and everything’s again. And now it’s on with the show. Jennifer Chapman, welcome to the podcast.

    Jennifer 2:57

    Thank you so much for having me.

    Bill 3:00

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

    Ischemic stroke caused by Vertebral Artery Dissection

    Bill 3:07

    Yeah, so I spent my career in corporate sales. And was in this position, you know, hustling and grinding every day and feeling the stress, but I guess I didn’t know how much stress I put myself under. I was switching roles and positions within the company. And literally, the next morning I woke up and was prepared to start my new role and was getting ready to leave for the day and felt overwhelmingly dizzy out of nowhere.

    Jennifer 3:46

    Who hit you know very fast and was sweating profusely through my clothes and was like this can’t be right. So I lay down for a minute and it didn’t subside. So I called a family member and told her I didn’t feel right. And she said you don’t sound right. And I could tell that I was starting to struggle to swallow.

    Jennifer 4:06

    And my voice was changing. So I was humble myself. So I called 911. And the ambulance came to get me and I got to the hospital very quickly. I mean, within 15, 20 minutes, but unfortunately, it took them gosh, probably 12 hours for them to determine that I had suffered a stroke at 34.

    Jennifer 4:28

    And I think it was because maybe of my age that was not the first thing on their list to consider. I think they thought it was vertigo. So I think that time was crucial right? looking back.

    Bill 4:39

    Yeah, absolutely crucial. So what kind of stroke was it?

    Bill 4:42

    It was an ischemic stroke. So I had a clot but they didn’t find that right away like I said, so it took quite a few hours and once the second MRI showed a picture. It had happened in three different places in my brain.

    Bill 5:03

    So three different clots in three different locations?

    Jennifer 5:08

    Correct.

    Bill 5:09

    Wow. And do they know what was the underlying cause of the clots?

    Bill 5:16

    So Bill, it took 18 months for them to figure out how this happened. And in between that time, they ruled out a lot of things. You know, I wore heart monitor to make sure there was nothing, no heart issues.

    Jennifer 5:30

    I had gone to a hematologist, for any blood disorders, they took quite a bit from me that day, but nothing really stood out to them as far as why would cause a stroke. So I went to several specialists throughout that 18 months, but we finally did another CT scan and an angiogram.

    Jennifer 5:49

    And that’s where they determined that I had a dissection in the artery in the back of my neck. It was so small, they didn’t see it for clearly quite some time, but and then over time it had scarred over and is healing on its own. So I didn’t have to have surgery or anything. But yeah, talk about anxiety and fear until they found the answer.

    Bill 6:13

    Yeah, so anxiety that it’s gonna happen again, fear that you might die. What was the what were the emotions around that?

    Bill 6:20

    Yeah, it was emotional instability, for sure. I mean, I was crying every day, questioning every single move that I make in every pain that I felt. If I even remotely felt dizzy for a split second, right? Or if I stood up too fast and fell off.

    Jennifer 6:40

    It’s like, is this is this another one? Is this going to happen again? And is it going to be worse this time? Am I going to be able to recover and heal like I did this time? I mean, all those questions run through your head all the time.

    Bill 6:53

    And who’s living with you or you’re living on your own? Or do you have family around you?

    Bill 6:57

    I am married to my husband of 11 years. We have no children. We do have a chocolate lab who has our child. So he has really been a tremendous support system for me, you know, he wasn’t home that day. But he was at the hospital before I could even get there. And it’s stayed with me by my side every single day since so.

    Jennifer 7:22

    So you know how you’re experiencing anxiety and fear around the possibility that there might be another stroke. How’s your husband coping with that? What is he experiencing? Or is he different from you in the way that he handles these types of situations?

    Bill 7:39

    He’s completely different than me. And I think, I think it’s hard. I can only imagine how hard it is. And maybe it’s different from men to women, you know, as the caregivers as the caretakers, how they handle it, I think that if it were to happen to him, I would be I would still feel anxiety and stress with him and for him.

    Jennifer 8:01

    But because it was the opposite way. And it happened to me, he came across as an extremely strong person and didn’t show any, you know, fear or weakness or stress or anxiety. If he did, I wouldn’t know it.

    Jennifer 8:22

    And I know he did within the hospital this first couple of days. You know, my friends and family expressed that to me, but I never saw it. I was never aware of any emotion that said that otherwise, aside from he’s got me he’s gonna take care of me.

    Bill 8:38

    Yeah, caring, how many years ago was it?

    Bill 8:44

    I will have my fourth anniversary at the end of March this year. So March 30, of 2017.

    Jennifer 8:53

    Okay, so have you had a chance to speak to your husband about it since? Have you maybe gone down there and had that conversation with him to actually see what was happening, what the underlying concerns that were even though he was behaving like a duck, call and calm and collected on the water? Probably doing some stuff underneath that you couldn’t see?

    Bill 9:19

    Yes, we’ve talked about it. But he’s not one to get overly deep on his feelings and emotions. You know, he still comes across it’s pretty surface level. I know he was concerned and worried and I heard that from his parents and his mom was an extreme support system to me as well.

    Expressing emotions

    Jennifer 9:41

    So I’m sure she had those conversations with him pretty early on too to see how he was coping and dealing But since then, he just shows me that he cares and is concerned versus talking about it.

    Bill 9:57

    Yeah, that’s a typical man thing and I find.

    Bill 10:01

    Yeah I don’t think I’m saying anything surprising to anybody.

    Bill 10:04

    No, I keep raising it though, because I think if men do listen to this podcast, I just want to raise it as a point of, we know what you do we know what you’re like, we know what you’re not expressing and not sharing.

    Bill 10:16

    And they might be the things that you need to share and express at some point in time in your life. And you don’t have to do it now. Just do it when you’re ready. But when the time comes, don’t then.

    Bill 10:26

    And I say that, as a man who went through stroke, the first episode was nearly nine years ago, in February, it’ll be nine years. And I struggled a lot with the emotional side of it, and expressing myself and being more willing to go to those, you know, deep emotional places that a lot of work needed to be done, there was a lot of work.

    Bill 10:55

    So then finding myself being a little bit strange in a group of other men who wouldn’t necessarily go there. And that it was odd that I was going in there, and I was the odd one out, but they appreciated when I spoke about it, they just didn’t engage in the conversation.

    Jennifer 11:17

    I believe that,

    Jennifer 11:18

    Yeah, and then, and then just seeing how my brother reacted as opposed to how I reacted, and then how my dad reacted. So it’s a very interesting conversation. Most of the people who approached me to being a podcast are not men, it’s women.

    Bill 11:34

    And most of the people who are prepared to have coaching are not men, they are women and most by my little basic version of the way that I sort of judge a situation or things that are going on, you started to show a pattern of men tend to just sit in the background and process things by themselves and do the stiff upper lip kind of thing.

    Bill 11:59

    So it’s good that he’s got his way of doing it. And that’s really important, too, that you appreciate that it’s his way. And his way, it doesn’t have to be your way, or it doesn’t have to be the way that somebody else does it.

    Bill 12:12

    100% That’s right. And it’s taken, you know, like I said, we’ve been together 13 years, it’s taken time for me to understand how he does cope and deal with certain things versus the way I do with with a lot of things in life, right? Serious situations, not so serious, we handle things completely different. And it’s understanding and accepting how each other handles it. And being okay with it.

    Bill 12:40

    Yeah. So you guys were quite young when you got married? How old were you when you married?

    Jennifer 12:47

    27.

    Bill 12:49

    Okay, that’s not that young. It seems like you said you guys were together for 11 years or longer?

    Bill 12:58

    I got married at 27. So we’ve been married 11 years been together 13.

    Jennifer 13:05

    Okay, so at 24 you guys got together, was there any idea of planning about the future about how your life was going to pan out and what you guys were going to be doing together and achieve and all that kind of thing?

    Bill 13:27

    Yes, we definitely had created a vision together. As far as what we wanted our lives to look like. And we knew early on, children was not in our by choice, we decided not to have kids, we were both just on the same page with that and wanted to enjoy our lives and, work until we could, you know, retire and enjoy travel and the things we wanted to do when we wanted to do them.

    Change of perspective for Jennifer Chapman

    Bill 13:55

    Had stroke, interrupt your plan for the future? What does it do at the time when it happens in that first, say, 12 months? And now that some time has passed? How has that changed again?

    Bill 14:12

    Yeah, great question. I think that first year for both him and I, I know but speaking for me in recovery, like my brain didn’t process any of that. It was much more short term. Like you I’m just focusing on, you know, rehabbing and recovering and getting better every day.

    Jennifer 14:34

    It was definitely day by day for me for the first year. And I think that’s how he thought of it. But he’s always been much more of a long term goal oriented person, whereas having a stroke for me has changed my perspective, in the sense like, yeah, I hope and still want all those things, you know, in 10 15 20 years, but I’m also much more focused on that today. You know, the moment we’re in, what do we’ve got? What’s our goals for tomorrow and this weekend? And so I our perspective is different in that regard for sure.

    Jennifer 15:09

    When I had the first episode, the first bleed in the head, I didn’t consider that my life was going to be potentially lost. I didn’t think about that, then. Then six weeks later, I had another bleed. And that was the one that made me feel like, you know, the next one could be the last one.

    Bill 15:36

    That was one of the scariest things for me is that I wouldn’t have enough time with my family to tell them what I needed to tell them to make things right to be a better version of myself all that stuff. And I considered my mortality for the first time. What was the scariest thing for you?

    Bill 15:57

    That’s a good question. I think the scariest thing for me was honestly accepting this new version of me. Really, it was working with a life coach that I hired about 18 months after I tried therapy, and that there’s a place for therapy, no doubt about it, it just didn’t work for me.

    Jennifer 16:26

    So I heal through working with a life coach, and working to find acceptance in this new version of me and because you’re really grieving the old you is what I’ve come to realize, right? Like, this may be a better version of me, but it’s taken me you know, two and a half years to, to get there. And I still continue to do daily work on myself and my mindset, to feel confident enough in knowing that that’s who I am now, this is who I am, and I am more than okay with it.

    Intro 17:01

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time and can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse.

    Intro 17:19

    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’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.

    Intro 17:41

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

    Jennifer 18:15

    That was the scary part.

    Jennifer 18:17

    Yeah, that’s an interesting scary part. And you know, most people go into very different places when they have a stroke. But they’re scared about so many other things. And that’s okay.

    Bill 18:26

    For me. I like what you said about the therapy side of it, and what got you through. So I’m a coach. And I’ve been a coach for probably 10 years, and I’ve coached people in a whole bunch of different areas in their life. It seems like regardless of why they are attracted to me, they’ve all got the same problems.

    Bill 18:44

    But I was going to therapy for 20 odd years, 21, 22 years. And at the beginning, it was useful. And then after a few years, I kind of got this is getting old, I’m getting annoyed with this. It’s not working, I’m not solving my problems.

    Bill 19:01

    What I didn’t realize was there was a level of responsibility that I needed to take to solve my own problems. Me going to therapy and just talking about it forever, wasn’t going to achieve anything. And my therapist was an amazing lady. And she was encouraging me to do all those things.

    Bill 19:18

    And the reason I continue to go after that first initial block, and that hurdle in the first few years of therapy was because I had great rapport with her. And I could go to her and just have one of those real amazing conversations that I couldn’t have with anyone else.

    Bill 19:39

    That wasn’t about fixing me it wasn’t about making me better or any of that stuff. It was just about me going and not being judged and having a conversation and sharing myself. And then she had no reason to question what I was saying. And she made me feel validated that how I was thinking and the things that I was doing.

    Bill 20:07

    Were okay, and they were on the right track. So then I found a life coach who said, what you need to do is unravel the path towards achieving that particular goal that you want to achieve.

    Bill 20:22

    What is that path? What does it look like, and what’s stopping you from getting there? So combined with the therapist, me going then, and just expressing myself and finding somebody who wouldn’t judge me and who would appreciate me for me, meant that I could free myself up from not having like minded people around me, and then I could seek them out by going down this other path of coaching and overcoming my lack of skills.

    Bill 20:51

    And that’s what my biggest concern was, when I was growing up, it was I didn’t have the skills to achieve these goals. And I thought it was too difficult for me to do. So I love how you also got to that point with therapy being useful for one part of your life? And then actually, am I saying it correctly, you needed coaching to get you through the path or the process to wherever it was that you want it to go?

    Bill 21:20

    Correct, that’s exactly right. I felt like therapy. You’re diving into your past. And like you said talking about it, which can very easily become just mentally and emotionally draining just talking about it every time. But with coaching, it was like, let’s accept the current situation. Let’s understand it. And let’s learn how to move forward. And I’m like, yes, that resonated with me. That’s exactly what I wanted to do.

    Jennifer 21:50

    That it. And what’s the future about, and how do we get to the future version of you, which is the one that has a new career potentially, or the one that has had some amazing experiences that you never thought you might have like traveling? Or playing, you know, a part in some kind of a theatre production, whatever it is that your heart desires, that gets you moving.

    Bill 22:15

    That’s exactly right. It was an incredible experience working with her to define what this new version of me is going to look like. And not only that, rebuilding my confidence in myself, I was really struggling with, with the belief in myself that I am capable of whatever it is that I want to do.

    Jennifer 22:41

    And I felt like she believed in me before I could believe in myself. So I was really struggling to wrap my head around. You know, taking these big leaps that before I knew I could take without a doubt. But now what’s stopping me? No one else but me that was it. Getting out of my own head.

    Jennifer 23:03

    Yeah, pretty much. And taking action, you know, gutsy action to move forward, and finally connect with that person, finally do something about that thing. And finally, you know, risk of being rejected, finally, overcoming your monkey brain. And the ideas that it’s thrown out there about why it’s so difficult or what’s not possible.

    Bill 23:27

    What labels had you given yourself before the stroke. So I was a guy who was self employed, who worked 24 hours a day, seven day a week. And even if I wasn’t at work, I was always thinking about work or doing something that was related to work. And I never had enough time for myself.

    Bill 23:46

    And I always whinged about that and always complained about that. And I thought that it was the world that was at fault. That was the kind of way that I labeled myself. And I quickly realized that that version of me wasn’t going to help me in my recovery. What kind of labels have you given yourself that had to shift?

    Bill 24:08

    That I was more than just a sales rep. And it was a massive organization, but knowing that I was more than the title of a sales rep. And that was me giving myself that right. No one else did. I mean, anybody did, I didn’t care about that. I had the support before for sure.

    Jennifer 24:34

    But in wanting to stand on my own two feet, aside from being a wife to my husband, that had a great job, no doubt about it, but I was at that point, establishing myself as a career, you know, sales professional. So that’s been a total shift for me. Now knowing How much more I am giving myself that value and that worth as a person.

    Jennifer 25:06

    Yeah. When stroke happened did you find that that conversation happened quickly? Or did it take some time before you had to go back and reassess.

    Jennifer 25:24

    Not a lot of conversations happened too quickly. After, to be honest, it was much more about just the physical action that I had to take to work on myself from a physical recovery standpoint for the first 6, 7, 8 months. And even before that, I rushed back to work, I was asked, you know, I came back, so I wanted to feel normal, and think that I could just jump right into where I left off and continue to meet those high results and expectations.

    Jennifer 25:59

    And they weren’t asking that of me. That’s what I wanted out of myself. But it, you know, after a few months of thinking, I was back to normal, it wasn’t, you know, is figuring out having this conversation of, okay, you’re no longer fulfilled selling this or that.

    Meant to do something more

    Jennifer 26:20

    What, do you want to do? What is your sole purpose telling you to do here? And that’s when I, had conversations with leadership team, and they were super supportive with me. And we’re willing to make something work if we can make it work as far as being in a role. But I knew I had to step away because I knew I was meant to do something more.

    Bill 26:44

    Yeah, I like it. I was a bit thick. Like, I didn’t realize that I was meant to do something more. I just realized that I had to stop doing things the way that I was doing them, because obviously, it wasn’t working. And I wasn’t enjoying my life. I didn’t. Isn’t it weird that I didn’t even realize that I wasn’t enjoying my life, I just was really angry about it. And used to take it out on everybody else interesting.

    Jennifer 27:13

    I had no idea. So my coaching is what helped me understand that there’s some joy to be had, at some point down the road somewhere. And again, it wasn’t an awareness that I had, it was just a path that I was following, because somebody was guiding me beautifully down that down to that path.

    Bill 27:35

    And I remember getting to about 2000, and, you know, 15, or something like that, which was just a few months after. Maybe it was a year after brain surgery or a few months after brain surgery. And I thought, why don’t I just do a podcast where I interview people and talk about strike because I think what I was lacking was the connecting with people that will like me now.

    Bill 28:05

    And that I understood and who really understood me. And I had that podcast going for about 20 or so episodes. And I hadn’t interviewed many stroke survivors. And while I was doing the podcast, I was just interviewing people who are recovering from different ailments and different health issues.

    Bill 28:28

    And I related to them to an extent. And we had some amazing conversations, and I called it the transit lounge podcast. And it took me about a year or more to do those 20 episodes. And then as I continued to understand what podcasting was about, and why I was doing it.

    Bill 28:47

    It happened I reckon two years later, where the light bulb moment occurred when I realized that what I’m doing is actually helping me in my recovery, and at the same time is helping other people. And I might, could it be possible that that’s part of my purpose in life is to really connect with people who I can help, and then also have those people help me in this really loving two way relationship that just came.

    Bill 29:19

    And if I had to think about that, and try and find a way to get to that, I don’t think I would have got there. But the fact that I was just doing and being and enjoying this process is what made me reflect four or five years later and go well, that’s one of the best things I ever did was just do something even though I don’t know what it’s going to mean in four or five years.

    Bill 29:46

    And even though I don’t have to commit to it, just do it and see what comes of it. Do you find yourself being down the road and then turning back and going Well, if I never did that thing or if I never had that experience that never would have led to the next one, and then never would lead to the next one, and then I wouldn’t have had this amazing 12 months of growth or expanse, or whatever, is that familiar?

    Bill 30:16

    It’s amazing to think that if I, if I hadn’t had the stroke, I would like to think that I was still at that company, you know, thriving and, you know, being a successful leader at that company and have worked my way up, you know, but almost four years ago, my life completely changed.

    Jennifer 30:38

    And working with my coach to realize this happened for me, not to me, that this happened for a reason and really understanding what the reason is, and why? You know, looking back, I have no other thing to say, but that I’m thankful that it happened because it’s brought me to where I am now.

    Jennifer 31:02

    And it’s brought me to what I look forward to doing moving forward, which is serving others and being able to coach, others that are still stuck. They don’t necessarily have to be stroke survivors, obviously, although that is who I resonate the most with. But I feel like there’s lots of people out there that are looking to overcome these mental and emotional challenges after a life changing event or trauma.

    Jennifer 31:26

    And they’re just trying to figure out how do I accept and adapt and embrace the new me? So yeah, it’s crazy that it’s taken time, and that someone can say they’re thankful, but it’s truly a blessing.

    Jennifer 31:42

    I say the same thing, and many people can’t yet say that. And that’s okay. I also relate to what you’re saying about, you know, helping others and supporting other people. What I realized was that stroke survivors had the same problems before stroke that they have after stroke.

    Bill 32:05

    But now they might have a few extra ones that are, actually because of the stroke. So when you’re coaching a stroke survivor, it’s not the stroke, that you’re coaching them to overcome or get over, you’re actually coaching them to overcome the shit that came before that, that has now reared its ugly head again, and in a bigger and more urgent way, because now life for me, it could be over, or, oh, my God, I haven’t done all this stuff that I was supposed to have done, because I made all these ridiculous excuses.

    Bill 32:39

    And now look at me now. Now I can’t walk, I can’t use one of my arms. And here I am, with extra problems. And now I really have problems. Whereas before, it was just in my head, it was just stories. So when I come across somebody who needs help, stroke is my platform.

    Bill 33:02

    It’s what I use to connect with people. If I didn’t use stroke, I wouldn’t know how to connect with you. We wouldn’t be able to connect. Right? So now I use this weird word I call a stroke. And now all of a sudden, people connect. Now with other people, it might be a hobby, they might be into drone photography.

    Bill 33:25

    And what they find from drone photography isn’t other people who know how to take photos with a drone. It’s somebody who they can relate to who shares their pain, their passion, their ideas, their creativity. And the drone is just this weird thing that we squeeze in the middle to make a connection.

    Jennifer 33:45

    Right? Yeah, I totally understand that. And I’m on the same page with you on that. I feel like the problems that I thought I had before that I thought were big deal. aren’t that big a deal anymore. That’s what I’ve come to realize. Like, really I feel like I’m so hyper aware of everything now.

    Jennifer 34:10

    Good, bad or indifferent. But what problems am I really sweating here? Is it was I really sweating over you know, traffic that day, which used to, you know, I could really have gotten worked up about some thoughts on the road all the time, like, now, it’ll be okay. I’ll get to where I need to get what I need to get there.

    Jennifer 34:32

    You know, like, really trying to manage the stress level. And making sure I’m in a calm state of mind as much as I possibly can be because the stress isn’t worth it. It’s really trying to how to manage that right? It’s the the mental health piece. That’s so crucial in recovery.

    Creating stress


    Bill 34:53
    Do you feel like the stress is something that you created bad habits around and weren’t aware of it. So the reason I asked that is because I truly feel like my stress when I create stress it’s, again, I just said it like I create it. I know there’s an environment around me. I create it, do you feel like you fell into some bad habits just because of life? Or I don’t know what not paying attention enough.

    Jennifer 35:25

    So yeah, growing up, always, I’ve been an extremely competitive person. So whether that was playing sports growing up, or any type of competition, you know, at work, you know, since I’m in sales, there’s always competition to hit numbers. And because I was a competitive person and cared so much about winning, that was the stress I put on myself.

    Jennifer 35:54

    You know, thinking that I was competing with other people, and I would put these ridiculous expectations on myself. Yeah, there was corporate expectations. But ultimately, if I was going to win, I was going to do what I you know what it took, but I put all that on myself.

    Jennifer 36:11

    Which isn’t worth it at the end, to feel the way you’re gonna feel to try and win what? I mean. So it was just that shift in mindset for me, because the competitive side of me helped in recovery, I will tell you, because I was trying to be what I accomplished the day before, and an athlete and competitor me, that’s where I thrive, no doubt about it. But yeah, from a mindset standpoint, taking that level, you know, knowing how to manage and take that level of stress down because like you said, we put it on ourselves.

    Bill 36:50

    As an athlete, if you’re preparing for an event, and you’re stressed how well are you going to achieve that? in that event?

    Bill 37:03

    It depends. It depends on where I grew up, tennis was my sport of choice.

    Bill 37:10

    So if you’re stressed about what happened in the car park, or what happened on the way to the game, how much is that gonna help you with the game? If you don’t let that go?

    Bill 37:24

    Yeah, typically not well, I’m going to beat myself before they’re gonna beat me. Like, it’s what I’ve done, right? My preparation, what I’ve put in my head before I stepped out onto the court. You know, if I was in a good headspace, it would go so much better. Looking back, you know, being able to process all this now. It’s like, oh, man, I got myself into all kinds of trouble. And I did a lot of damage to myself, let alone the competition that was out there.

    Jennifer 37:56

    And isn’t it interesting that as somebody who had been coached for a long time, in tennis, your you knew that when you’re stressed, and you take that onto a game onto a court into a game, that that’s going to impact your performance? There’s so many people who participate in sports that know that yet, we don’t do that. In life, we don’t have that conversation.

    Bill 38:23

    We don’t know that about our life. So we’ll leave the stress behind when we go on the court and have a great game. And we’ll say yeah, I was in the zone and everything went right for me today. And I was feeling great, etc.

    Bill 38:35

    And, you know, all the steps that you took to get to that point to be great in the game, you probably meditated or ate well, the day before, you probably did all these amazing things. You had your preparation, and your process. And then you go into regular life and you’ve got no process, no preparation, nothing just just turn up and use or just play out all the crazy habits.

    Jennifer 39:01

    That’s right. It’s, incredible. You know, what can happen in your life if you just know how to properly take care of yourself in all aspects mentally, emotionally, physically, spiritually, all the things, if you if you have if you can put a routine in place, you know, every day, every morning, whatever that looks like knowing to get good regular sleep at night.

    Jennifer 39:30

    Eating great meals, drinking a lot of you know enough water, getting your your 30 minutes of exercise. Maybe practice gratitude journaling, which I didn’t do until after all this had occurred. But what that can do to shift your mindset as well but just to be in a good headspace. How much more productive and successful you’ll be that day versus the self sabotage you can do to yourself.

    Bill 39:55

    So good. What was the hardest thing you’ve had to overcome? So far, so whether that be cognitive or physical, what are some of the things that you’ve had to overcome, that were caused by the stroke?

    Post-stroke deficits

    Bill 40:10

    Yeah, so I’m blessed physically, that if you saw me on the street, no one would ever know, I’ve had a stroke. So I am well aware of that, and incredibly thankful that I was able to overcome the physical challenges, the biggest deficit that I have, that no one can see is that I lost lost my left peripheral vision.

    Jennifer 40:35

    So I don’t have about 40% of my vision. So I don’t mean there’s like a straight line looking versus the left side of my, my body over here. So I adapted that every day, I’ve gotten better, right over the over the years of knowing that’s not going to change, there’s nothing we can do about that. I’m blessed that I got my license back a few months later.

    Jennifer 40:57

    And I’m able to drive where I know, there’s so many people that you know, they, they lose that freedom. But that’s still a challenge. And it can still mess with you mentally, to know that you don’t have 40% of your vision. And then the other deficit that I had to overcome, which was also extremely challenging, that no one can see is my vocal cord was paralyzed.

    Jennifer 41:23

    So not only did I have the speech therapy to get the strength in my voice back, but it affects my ability to breathe. So it doesn’t affect it on a daily basis, or when I’m sleeping or anything, but as a girl that used to do boot camp style workouts five to six days a week, and push myself to the point of exhaustion and exertion every day, and I couldn’t leave the gym without you know, being completely drenched in sweat and that was a de stressor for me, right?

    Jennifer 41:53

    I can’t do that now. Because I have to be able to catch my breath. So I can’t really do any cardio or anything. And so I’ll get winded extremely easily. So overcoming that not only physically figuring out another way to work out, but as a de stressor, how am I going to de stress mentally, knowing I have to change such a big part of my life. So that’s been that was challenging. I found a new way and I love it, but it took some time.

    Bill 42:23

    So what’s the new way?

    Bill 42:27

    Pilates is my passion. I never would have considered that before not judging anybody that did it. It just didn’t seem like the type of workout for me that was going to accomplish what I wanted to accomplish. But now.

    Bill 42:41

    Let’s face it, it seems weird Pilates whatever.

    Bill 42:46

    Yeah, what are we doing? Are we stretching and doing abs? No, it’s hard every single time.

    Bill 42:55

    But it’s amazing I know. So Pilates. So you do that a few times?

    Jennifer 43:03

    Oh, yeah. I probably six days a week. I take one day off.

    Bill 43:08

    I can see you don’t do things by yeah.

    Bill 43:14

    I love it. It’s continued healing and therapy too to do Pilates. Right. I mean, it’s, I’m consistently working on my balance still, and breathing, and, you know, just stretching. And it really is such a great form of exercise and therapy for me.

    Bill 43:36

    So have you tried to play tennis again?

    Bill 43:42

    Not really. I have not stepped on a court in a while. And here’s the thing, I wouldn’t want to get out there and get frustrated. Because I know I’m not even close to where I was before. So that’s the competitive side of me knowing like, if I’m not gonna be able to, you know, do what I used to be able to do on the court. I’m good, I’ll walk away.

    Jennifer 44:08

    All right, that’s your challenge, your challenge is to put that out of your head and just go on to the court and just be there. And even if you can’t win a game, because you’re not going to actually be there to play a game, you’re just going to have a hit. That’s what my challenge for you is just go back to the tennis court, and just feel it and see what it’s like. And if you don’t like it, that’s fine. But you might be like.

    Jennifer 44:31

    It would feel good I know.

    Bill 44:33

    Yeah. Give yourself that let yourself do that. And it doesn’t matter that you aren’t going to be as competitive as you were before because you’re trying to evolve from being that kind of person anyway, you don’t really want to be in that space because that’s not the space that you’re in. Now you’re in a different space.

    Jennifer 44:53

    I can do that.

    Jennifer 44:57

    It’s not for me to tell you what to do or give advice unsolicited especially, but it just to me, it sounds like man like that’s what you must do, for me and I say that because there’ll be a lot of other stroke survivors going, ah, I couldn’t possibly go back and try that again or do that again.

    Bill 45:15

    And for me it was riding a bike. And I got on a bike and my balance is affected. And as a result, you know, I would feel a bit less sturdy on my left side. And then also I can’t feel my left side of my body. It’s very numb, and that meant that my foot wouldn’t.

    Jennifer 45:35

    That’s how my right side is.

    Bill 45:37

    Yeah, right. Okay, so my foot on the pedal would fall off the pedal, and the pedal would scrape my shins. And, and it was a real difficult thing for me to ride a bike and I stopped doing it for about four years, I got sick of it, and I couldn’t do it anymore. Because it would be very tiring to turn the pedal, my leg would fatigue.

    Bill 46:00

    So then I discovered electric bikes. And I realized that when I get on an electric bike, and pedal, my foot doesn’t fatigue as much. And I don’t ride my bike for, you know, heaps and heaps of time or for very long distances, I just do it so that I can get a feel for this freedom and sense of, you know, the wind rushing by your head, and all that kind of stuff that I used to get when I was a kid.

    Bill 46:30

    So after four years of refusing to get back on a bike, because it was too scary or too dangerous, I found the solution and I got back on it. And now I do it, maybe two or three times a month for a couple of hours. And it just brings me so much joy. And it’s a very gentle form of exercise as well.

    Bill 46:50

    Because like you, I really am not going to run again, I’m not going to do very strenuous type of exercises like I used to do before. So this is just a lovely way. And it took me four years to overcome it and find a solution to it. But most of the four years was made just overcoming my concern with it and my fear.

    Jennifer 47:10

    Exactly.

    Bill 47:13

    So you experience it. You experienced right side numbness. Is that constant? Does it get worse when you’re tired at the end of the day?

    Bill 47:23

    It does. And that’s right, that’s another thing that people don’t see. Unless you tell them is my right side feels completely different than my left. Not that I have necessarily weakness, but the sensitivity to like hot and cold.

    Jennifer 47:39

    I don’t really feel that on my right side. Like I do my left. It’s like literally aligned directly down my body. My right leg is overly sensitive. It’s tingley. And depending on the temperature or fatigue, it gets worse. I mean, there’s days that it’s, it’s definitely more tender than others.

    Bill 47:57

    I try to explain that to people. And there’s only one way that I can it’s like, do I tell them? Have you ever sat on your leg and it’s gone numb, and it feels tingly? And they say yes, I say well, that’s how my entire left side feels. And it starts from the middle of my head to there.

    Bill 48:17

    And, all the way down. And to bring a bit of humor into it. I tell them that it is halfway between every single part of my body you get what I’m going you get what I mean yeah, guys? So yeah, they find it bizarre because I explained to them it’s you know, every part of my body, just get that in your head. You know?

    Bill 48:45

    And I gotta ask on your on your left side, your left side is tingly?

    Bill 48:52

    Yeah.

    Jennifer 48:53

    Does it affect the right side of your brain. I feel like I’ll feel tingly on my left side of my head. But it’s the right side of my body.

    Jennifer 49:03

    Yeah, so exactly that so my bleed was on the right side and the surgery was on the right side. And the left side feels strange and bizarre, although it’s the healthy, quote-unquote, the healthy side or the good side of me. It’s the one that is always tight and stiff.

    Bill 49:22

    And always overcompensating, my muscles are always contracting in weird ways. So the right side feels normal. And sometimes I have the days where I do the comparison. So do you ever do those days where you’re going? Oh, shit, my left side feels weird again.

    Bill 49:40

    I do that and that frustrates me sometimes. Because sometimes I feel and I wish like I wish it wasn’t doing that right now. I wish I was just feeling one. Did you get that you have that experience?

    Bill 49:56

    Totally. I definitely do. I think the part I worry about is feeling sensations in my head. On my left side, I’ll feel sensations and I don’t know how else to explain it. Except I don’t feel tingly or sensitive on the inside.

    Jennifer 50:15

    And it’s being reassured that that’s just the new, you know, it’s your new normal. Like, I met with my neurologist last week, actually, who I enjoy meeting with, and she’s taking good care of me these last almost four years. But it’s like, if you don’t have any concerns, I guess that I need to, you know, be okay with it.

    Jennifer 50:40

    But it’s, yeah, there’s days where I’m like, what, what is that? Do I need to be worried I need to call somebody, I need to just let it be, you know, meditate, calm down. And know that I’m okay.

    Bill 50:52

    That’s fair, because I had that conversation around the four or five year mark as well. And my neurologist said, you’re good to go. And whatever you’re feeling or feeling or whatever you’ve got, you’ve got, but you’re good to go. As far as your head is concerned.

    Bill 51:11

    But I remember even about 18 months ago, I was in the hospital concerned about stroke. So I’ve been I’ve been out of this, you know, risk category for nearly four years now, maybe nearly almost five years. And I had this really strange day where I felt really off.

    Bill 51:36

    And my head was feeling really terrible. And at the same time, I have, do you see this thing on my forehead on my eye here that a little bump? So that’s a blood vessel that has expanded or swollen or something’s happened to it. And that happened at the same time as this really bizarre, strange headache.

    Bill 52:04

    So, for me, it wasn’t silly to go to my hospital where I had been treated and had surgery and say I know it’s probably nothing but I’d rather check it out, than go worrying about it and thinking about it. And it turned out of course to be nothing.

    Bill 52:24

    But when I went there, they took it seriously. They said to me, Look, we’re glad you’re here would rather you come and let’s check it out and let’s get to the bottom of it. And then I went home feeling relieved, and I let the headache just relax. And that was that.

    Bill 52:39

    Yeah. Peace of mind is everything.

    Bill 52:43

    Yeah, it really is. And, I don’t think I’m gonna go through the rest of my life ignoring a headache anymore.

    Bill 52:56

    And I still battle those too, I still get headaches. And that’s what I met with her about recently, I got headaches before the stroke. I mean, I’ve had them since college. I’ve usually been able to manage them if I got a migraine or something with a medicine. But after the stroke, I couldn’t take that medicine anymore.

    Jennifer 53:14

    They said it affected your blood vessels and things so it was a risk to take it. So these last three and a half years. It’s trying to find a medicine that’s going to work as well as the one that worked every single time before which we’ve yet to find the ideal medication, I take a couple preventatives and everything, but I’m getting ready to start something new here soon to see if we can keep them under control.

    Jennifer 53:39

    Which I appreciate her so much and never giving up and always willing to try new things with me to kind of make sure I’m in a least amount of pain as possible and to have as much peace of mind as I can every day.

    Intimacy after Vertebral Artery Dissection

    Jennifer 53:53

    Yeah, it’s important with regards to if it’s okay, can we go for a little bit of time, to intimacy, and not on any details or anything like that. But for me, as a male, it was really, really important that I became intimate with my wife again, as quickly as possible.

    Bill 54:14

    And it was not obviously able to happen for a period of time at least six weeks. My doctor specifically told me because it was one of the first things that I specifically asked, and they said to me for at least six weeks because you’ve had a bleed and you’ve got potentially still a blood vessel that hasn’t healed properly.

    Bill 54:43

    We don’t want to get your blood pressure up and your heart rate going too crazy in case would cause another bleed so you should refrain from being intimate if you can. And of course, we did the right thing and we refrained. What’s the thinking like for you? And I’m asking you because I’ve never specifically gone out of my way to ask somebody. But I’m kind of trying to get the female perspective on how important intimacies and then how you go about navigating that.

    Jennifer 55:20

    A great question that I do not get asked all the time, that’s for sure. I’ve been hesitant. You know, these past three and a half years. I don’t know, I don’t have a good reason why just. Yeah, it’s an important aspect in 97% of the marriages, I’m sure. But my husband and I are in such a great place with our relationship.

    Jennifer 55:52

    And that might not be priority one anymore. But it’s being it’s knowing that we’re more than okay without that being a priority. And he’s respected that and it’s still a work in progress. No doubt.

    Bill 56:09

    Yeah, that’s fine. One of the issues that I had was the touch on my left side. So because my left side feel so different, tender touch really hurts.

    Jennifer 56:22

    Yeah.

    Jennifer 56:24

    And that is a real challenge for me, because I noticed that during those moments, and that might put me off, or that might bother me. And that might take my mind somewhere where it shouldn’t be going at that time.

    Jennifer 56:44

    Right.

    Jennifer 56:45

    It’s even an issue. The tender touch is even an issue when I’m just driving the car, and I have my hand on the shift. And my wife reaches over and she just pops her hand on there. And even that bothers me that annoys me, because she’s being tender.

    Bill 57:04

    And I’m saying to her, don’t do that don’t touch my hand, or don’t be tender. And that’s kind of weird, because (inaudible) to not be something that she’s doing to express, you know, love and connection with.

    Bill 57:23

    That’s hard to explain to because, yeah, there will be times where he, you know, he’ll want to, you know, show a gesture or, you know, touch or whatever that is, or just be simply kind. And it’s more of like a what am I agitated about? or Why do I not want that or, you know, it’s definitely still working with myself and through myself to figure out, you know, the attitude towards it.

    Jennifer 57:53

    And it’s interesting to see the things that didn’t drive me crazy before. But due now, and not just when it comes, not just when it comes to him, but just like the littlest things like, like loud noise or bright lights, or we’ll be driving down the road and like hitting speed bumps or something like that, like that. I’m very sensitive to that type of movement. Those things just drive me crazy. I don’t know why. But I just don’t like it.

    Jennifer 58:26

    Yeah, I can relate to that a little bit. So especially, and a lot of stroke survivors on the podcast, you know, there’s been more than 120 will tell you, that light sensitivity, sound sensitivity and too much stuff going on, for example, in a public place, like a, like a shopping center or a market or something like that is overwhelming.

    Bill 58:49

    And I avoided going out for many months to not experienced those overwhelming situations. But one of the things that makes me cringe is seeing people get struck in the head or, or Yeah, trying to watch the boxing or you know, he really makes me cringe and it makes me feel really uncomfortable about it.

    Bill 59:17

    And I am always kind of finding a way to protect my head if I’m in a situation where we’re not being rough or there’s just, I don’t know, if there’s just a potential hit me on the head. I don’t want to have a bar of it. And if you touch my head, you’re gonna know about it. I’m gonna let you know. It’s gonna be pretty tough.

    Bill 59:41

    I feel that I feel the exact same way about protecting my neck and head but you know, because of this, I don’t know how I got this tear in my artery in the first place. So like even if I go to a salon now with my hair, and you know that you get those sinks where there’s that dip.

    Jennifer 59:57

    It drives me crazy. I hate it. I don’t like it, we try and protect it and put extra towels back there to make sure I’m as comfortable as I possibly can. But like, we’re doing certain stretches. Even in class, there’s things I won’t do something like, it’s not worth me feeling the way I feel, even if I’m not doing anything wrong.

    Jennifer 1:00:20

    I reckon you’re not being too overcautious, because I something triggered when you said putting your head back in the salon. That that is a common cause of creating damage to people’s necks in many various ways. And I’ve never put my head in one of those situations.

    Bill 1:00:37

    But I can imagine that, you know, if you have a sensitivity there, and you put your head in that position that that could cause a problem. Also, chiropractic for some people, has been catastrophic. Yeah, because there’s a sensitivity to a blood vessel that nobody’s aware of not even the chiropractor, and it creates an issue.

    Bill 1:01:04

    And then they have a stroke. And also, one of the people who I interviewed a lady called Clodah Dunlop, I can’t remember which episode she was on, she was a police officer, and she was involved in a collision in the car at work. It wasn’t a dramatic collision.

    Bill 1:01:22

    But that force, that’s more force of her making her move her head backwards and forwards, created a tear, which turned into a clot A few months later, and then cause a stroke later. So the whole idea that you’re going to be protective around the sensitive part of your body is pretty fair. And it’s pretty good way to go about protecting your life, especially if you feel like you have a vulnerability there.

    Bill 1:01:55

    For sure, yeah, I definitely find myself extremely aware of things that maybe I used to be able to do. But now it’s like, it’s not worth it. You know, whether it’s what you know, going skiing, or riding a roller coaster, or some of those more active activities that we used to enjoy doing from time to time, and now it’s like, I’m good. It’s really being okay with that.

    Bill 1:02:20

    Yeah. You don’t miss it do you? I know what you mean. Because there’s certain things I just do not miss, I just will not go there. And it doesn’t matter that I’m not doing it anymore. I’ve experienced that. And that’s it, I’m done with it.

    Jennifer 1:02:35

    Yeah, I completely agree with you.

    Nutrition after stroke for Jennifer Chapman


    Jennifer 1:02:39
    Tell me about you saying like, you’re very proactive in your approach to recovery. As we wrap up, I’d love to ask you about nutrition and what you’ve done different or what you’ve continued to do or what you’ve started doing with regards to your food because I imagine when you’re playing tennis and you’re in the competitive sport like that you are really dialing in on your nutrition. How did that evolve or change or stay the same after stroke?

    Bill 1:03:15

    It’s interesting, not a whole lot I’ve always cared about my nutrition and you know, kind of everything in moderation you know, method but really, this last year through the quarantine that we’re having, you know, the States since last March. It’s really allowed my husband and I to care a little bit more, right, because we’ve just cooked at home so much more than we ever have.

    Jennifer 1:03:46

    So finding the joy in I do more than he does as far as like just cooking and you know, finding better recipes, healthier recipes to eat at the house has really helped us both out so great, you know, and still doing my Pilates and still staying active. And luckily we have a we have a dog who we take out multiple times a day. So finding that balance of activity as well as the nutrition piece. It’s always been important to me, not a whole lot has changed per se on that level. How about you?

    Jennifer 1:04:19

    Yeah, well, at the beginning I did really well and even continued to do quite well. I didn’t drink alcohol for the best part of five years. And I stopped eating gluten and caffeine and sugar.

    Bill 1:04:37

    And all those things that I realized I started to pay attention to when I was eating them will are making me feel unwell or they’ll make me feel sluggish or slow especially with cognitive fatigue. Caffeine gives you a boost but then you have the drop off and that causes fatigue.

    Bill 1:04:57

    Sugar does the same thing and bread, like from wheys and gluten and all that had always interfered with my digestive system. And when you have a sluggish digestive system, you really have a sluggish brain.

    Bill 1:05:11

    So I started to dial in on my nutrition and really took out a lot of the inflammatory foods, and I call them the fun five. And I’ve done a little course around it. And those fun five foods include alcohol, dairy, gluten, sugar, and caffeine. And I just became this most amazing version of myself physically, I had become a far more efficient version of myself.

    Bill 1:05:45

    And I had less bad days as a result of making those changes. Now those changes didn’t happen overnight. And they didn’t happen very quickly. I dropped one of them off, maybe every, you know, six to 12 months, so that I wasn’t being crazy about it.

    Jennifer 1:06:04

    Yeah, I think that would set you up for failure if you did, but I’m interested in your fun five and to learn more.

    Bill 1:06:13

    Yeah. So I interviewed a nutritionist and her partner who was a performance coach. So I got to the bottom of me really understanding from two other people’s perspective, why it’s important to minimize those food items.

    Bill 1:06:33

    And it really reinforced in me what was important to help my brain be optimum. And then we got to that point of being able to take one off just over time, over time. And after three or four years, I had got to that point. But that didn’t mean that when I went out with my friends, and we wanted to enjoy an amazing dinner, or a night out, it didn’t mean that I didn’t indulge, it meant that I just didn’t do those things for the majority of the time.

    Bill 1:07:01

    And then when I needed to catch up with people and have fun and just be normal, then I would be normal. And then I would recover well from that and everything would be okay, so that’s what I did. It’s a real big conversation, we could go on forever and ever, and I really appreciate your time and for being persistent with me and reaching out because we did have a little bit of time there where I wasn’t in the zone of doing podcast episodes, or taking emails from people or anything like that.

    Bill 1:07:35

    And I just want people to know that if you ever get to that point where it’s too much, and you don’t want to take emails and have conversations and you want to step away from life a little bit that you can, and that’s really important for stroke recovery, but your kind way of just reminding me that we still needed to do this podcast is what I needed. So I really appreciate the fact that you did that.

    Jennifer 1:08:05

    Thank you so much for the kind words. Yeah, I was intrigued the first time we had connected I don’t know when that was maybe three or four months ago. But yeah, you know, I got busy too. And I’m you know, working on my coaching business.

    Jennifer 1:08:19

    And so you know, I’ve got plenty on my plate, but I just think to be able to share, you know our stories. And maybe because maybe someone out there hears it needs to hear it and wants to hear it and wants to be in a better place than they are right now. With their recovery.

    Bill 1:08:36

    Thanks so much for being on the podcast.

    Jennifer 1:08:40

    Thank you I really appreciate it.

    Intro 1:08:43

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 1:08:52

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

    Intro 1:09:09

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

    Intro 1:09:26

    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 1:09:47

    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 The medical professional if you are experiencing a health emergency or think you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

    Intro 1:10:11

    Medical information changes constantly. While we aim to provide current quality information and our content we did not provide any guarantees and assumes 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 Changing Perspective After Stroke – Jennifer Chapman appeared first on Recovery After Stroke.

    1 hr 11 min
  • Exercise After Stroke – Lilia Artimenia

    Lilia Artimenia is recovering from an ischemic stroke and recently began sharing her story and adaptive exercises on her Instagram page

    Socials:

    www.instagram.com/stronger_after_stroke/

    Highlights:

    01:01 Introduction

    04:43 Ischemic stroke caused by PFO
    13:23 Memory and speech issues
    20:45 Post-stroke struggles
    28:47 Stroke Exercises
    33:32 Exercise After Stroke
    41:22 Future plans

    Transcription:

    Bill 0:00

    What motivated you to put up your Instagram page? The one where you’re sharing adaptive workouts.

    Lilia 0:08

    I started to look up workouts for stroke survivors. And basically, it was just a bunch of old people like doing this. And so I said to myself, this has to change because not all stroke survivors are old people. And so made the page.

    Intro 0:48

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

    Introduction


    Bill 1:01
    Bill from recoveryafterstroke.com This is Episode 128. And my guest today is Lilia Artimenia. Lilia is recovering from an ischemic stroke, which she experienced at the age of just 17 years and is working to improve her speech, as well as her mobility.

    Bill 1:20

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home. I too am a three-time stroke survivor and a brain surgery survivor.

    Bill 1:34

    And I have built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did. Support packages give you access to a variety of tools 24 hours a day, seven days a week so that you can also work on other areas of stroke recovery that you don’t get the chance to at physical therapy.

    Bill 1:56

    Support packages gives you access to a variety of tools 24 hours a day, seven days a week so that you can also work on other areas of stroke recovery that you don’t get a chance to have physical therapy or rehabilitation. With tailored support available for less than $8.50 a week.

    Bill 2:12

    All recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home to try out recovery after stroke support and see if it is right for you. You’ll get the first seven days free as well as a 30-day money-back guarantee. No questions asked.

    Bill 2:28

    As a bonus, you will get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up, you won’t cost you anything for the first seven days, and you’ll get a full refund. If you’re not happy after 30 days, you have nothing to lose and everything to gain. And now it’s on with the show. Lilia Artimenia. Welcome to the podcast.

    Lilia 2:53

    Thank you.

    Bill 2:55

    Thank you so much for being here. I really appreciate it. I decided to get in touch because Instagram is pretty exciting, or for me to read because you like to share exercises for stroke survivors. And then when I saw that, I became curious about who was behind that Instagram.

    Bill 3:20

    And I was shocked to find out that somebody so young was behind it. And I needed to understand why. What motivated you to do that? Can you give me a bit of a, can you let us know what actually happened to you?

    Lilia 3:37

    Well, I had a stroke. And I was thinking I wanted to work out after the stroke, right. But, my body was unable to like my right side was affected. So the majority of the people who were like, who had a stroke are old so they just kind of like given up at that point.

    Lilia 4:18

    And like saying, I’m not gonna work out at least I think. So I wanted to create an Instagram page where I’m making adaptive workouts for people who had brain injury and so yeah.

    Ischemic stroke caused by PFO

    Bill 4:39

    So what happened to you actually, though, you had a stroke, what kind of stroke was it?

    Lilia 4:43

    Ischemic.

    Bill 4:48

    Do they know what caused it?

    Lilia 4:51

    The PFO in my heart there is multiple causes to this. So I was on birth control. And that causes my blood to form clots. And I had a latent five factor blood clotting mutation, which is the blood runs extra thick and it like clots more easily. And I had a PFO in my heart. And so it’s basically like a whole heart, so to speak. And so I was a ticking timebomb.

    Bill 5:41

    You had a hole in the heart, which is also called a Patent Foramen Ovale. And you had this genetic condition that enables your blood to clot quicker. And at the same time, you were taking the birth control pill, which sometimes causes blood clots for some people and stroke.

    Bill 6:05

    Were you aware of any of those things before you were prescribed the pill? And then when you’re prescribed the pill, were you told that there was this underlying low risk of having a stroke from it?

    Lilia 6:19

    Yes, but I didn’t think that would be me. So, but it turns out, it was me.

    Bill 6:27

    Yeah. And how old were you at the time?

    Lilia 6:30

    17?

    Bill 6:34

    It’s a bit rough, isn’t it?

    Lilia 6:35

    Yeah.

    Bill 6:36

    What happened on the day? What did you notice?

    Lilia 6:41

    The day that I had my stroke, it’s kind of, I woke up really early in the morning to go. I was a ski coach. racer, and I raced for five years. And I decided to coach and it was my second year doing that. And I woke up really early, drove to the mountain, which is like an hour and a half.

    Lilia 7:14

    And I took my pill, which is like at seven in the morning when I got to the mountain. And went ski racing, I coached, and went back, got home made dinner, my boyfriend and I, were staying over at my dad’s place, because my dad was vacationing and later on like, I found, later when I was about to go to sleep.

    Lilia 7:59

    I was really tired, like really tired. And, like, an exhaustion I have only felt like, once in my life and that was that and I had a headache. And basically, that was it. Like, I had a stroke right then and there. And I didn’t know what was going on with me. And like, I couldn’t talk, my right side went numb and my face was drooping.

    Lilia 8:35

    And they told me that, my boyfriend calls an ambulance and the paramedics arrived, the EMTs. Whatever arrived on the scene 10 minutes later, and they said we don’t know what’s going on. They thought it was drugs.

    Bill 9:05

    Yeah. You’re too young you’re with your boyfriend, you don’t fit any of the common criteria for somebody who’s having a stroke. And it’s very common that people who are younger, who are having a stroke get misdiagnosed for being either drunk or on drugs.

    Lilia 9:29

    Yeah.

    Bill 9:32

    So when that was happening, when they were talking to you and telling you they don’t know what’s going on with you. Were you aware of what was happening around you?

    Lilia 9:44

    I was in a semi dazed state, so I could kind of make out what they’re saying. But I couldn’t understand like, my functioning like capabilities in my brain were not there, so I couldn’t make out what they’re saying. My processing information.

    Bill 10:14

    How old was your boyfriend at the time?

    Lilia 10:16

    17.

    Bill 10:18

    So he was 17 and he’s dealing with his girlfriend who’s having this issue?

    Lilia 10:24

    Yeah.

    Bill 10:26

    Have you had a chance to speak to him about it since then, and what that was like for him?

    Lilia 10:32

    We’ve been together for two years now. So, he was there for me the every step of the way, and I did get a chance to speak with him. And he said, it was really stressful. He said, I didn’t know the address of when I was calling the ambulance.

    Lilia 11:09

    So luckily, I looked up a mail lying around, and that’s how I got the address. And so he couldn’t sleep for like the past. Like, when I had my stroke, he couldn’t sleep for the past three days. And it was really traumatic for both of us.

    Bill 11:39

    Yeah. I can imagine. So you went to hospital? How long after you were in hospital did they finally tell you what had happened?

    Lilia 11:47

    Ten hours?

    Bill 11:50

    Ten hours?

    Lilia 11:51

    Yeah.

    Bill 11:53

    And then by then they had done scans on your brain and found out what it occurred?

    Lilia 11:59

    Yeah.

    Bill 12:01

    And then sometime later, did they continue to have you in hospital to discover the PFO? How long did it take before they discovered the PFO?

    Lilia 12:10

    I was transferred like I was rushed to the hospital in Aurburn Lake. And I stayed there for 24 hours. And then I was transferred over to Harborview inpatient ICU. And that’s when they found the PFO like, two days later, I think. Since the stroke, yeah.

    Bill 12:41

    Yeah. And in that time, I imagine your dad was around, he had been notified. What was he going through?

    Lilia 12:51

    Same thing stress, lots of stress. He didn’t know if it was gonna happen again. Or he didn’t know basically.

    Bill 13:03

    Yeah, that would have been tough. And then you’re in hospital. How long before you realize that there was going to be some rehabilitation that needed to occur and what were the issues while you’re in hospital?

    Memory and speech issues

    Lilia 13:24

    I didn’t really remember anything. That week that I stayed in the ICU Harborview. So I was mostly sleeping. And then they transferred me to Seattle, children’s inpatient rehab. And I just kept on going. I was still silent for about two weeks now.

    Lilia 13:57

    So my mom was praying for me, and my dad was praying for me that I would talk again. And that was the first step. And I didn’t know what was going on. I thought it will be fine. And I just kept on going and fighting.

    Bill 14:26

    Yeah wow, that would have been tough. So were there times when you couldn’t speak when you really wanted to say something that was important?

    Lilia 14:35

    No. I couldn’t really process information. So I didn’t have the words to talk. Plus, I didn’t feel like talking.

    Bill 14:51

    It wasn’t so bad. So it was probably worse for mom and dad because you’re not talking. Were you able to respond in anyway? Did they help communicate at all with some board or anything? Was there anything?

    Lilia 15:07

    Thumbs up and thumbs down. But half the time I got thumbs up and thumbs down mixed up.

    Bill 15:18

    They’re all confused even more. Wow so how long was it before you got to go home? How long did it take for you to actually get home?

    Lilia 15:32

    Two months.

    Bill 15:35

    And then the recovery. After that continued there would have been some adjustment period when you’re at home. What was it like to first go back home again?

    Lilia 15:45

    I was relieved. I didn’t feel like staying in the hospital one more night, even though I should have done I should have given them. So I was so relieved. And I was ready to be get back home. And the funny part was I had to go in a wheelchair.

    Lilia 16:32

    And then, slowly, I started making my way to the cane. And then to like, no help at all. And getting in and out of the shower was the hardest thing. I had a chair, shower chair, And so yeah, I was afraid I was gonna fall. But I didn’t.

    Bill 17:09

    Was that a problem? Did somebody have to help you in and out of the shower and help you shower?

    Lilia 17:17

    Yeah.

    Bill 17:18

    That was rough.

    Lilia 17:20

    Yeah.

    Bill 17:23

    Who got the job?

    Lilia 17:24

    My mom.

    Bill 17:26

    Yeah, well, that’s fair enough. Dad was probably relieved that he didn’t have to. Wow, that’s really tough. And what about your boyfriend? What kind of role did he play when you got back from hospital?

    Lilia 17:45

    He helped me out with stuff like zipping my jacket. And like, when I had a gait belt, he would hold the gait belt. Make sure I was steady. And I don’t really remember much about my boyfriend being there so.

    Bill 18:15

    Yeah, he probably was in and out as little as possible. Trying not to you know. Hang around like a bad smell.

    Lilia 18:25

    Yeah.

    Bill 18:27

    So were you at college? Or were you doing any of that kind of stuff before the stroke did that interfere with how did it interfere with your life?

    Lilia 18:36

    It stopped completely I was in senior year of high school. And I was doing running for about two years now. And it was the beginning of the semester, like quarter and winter quarter. And three days into it. I had a stroke. And life completely stopped. I was focusing on rehab and I was taking college classes at Bellevue College.

    Lilia 19:28

    And then once I got released, they were thinking I wasn’t going to graduate because of my stroke. And I needed two more English credits, and I wasn’t talking. But I graduated with a special ed program, and I didn’t want to be in that, but I graduated. And so yeah, and I deferred my admission to Washington State University by one semester. So I’m going to start in January 2021.

    Bill 20:36

    Awesome. So you’re still going to go to uni. And what do you hope to study when you go there?

    Lilia 20:42

    Neuroscience?

    Post-stroke struggles


    Bill 20:45
    What else would you study. Well done that’s awesome. So it does put a pause on life, doesn’t it? And in that time, in the last two years, what have you been experiencing? As far as physical symptoms, I personally went through fatigue, memory problems. I went through the inability to just do normal tasks, like drive, or remember my appointments, that kind of thing. What other little challenges that you struggle with.

    Lilia 21:28

    I was taking a shower. It only happens in the shower, really. And before my stroke, and I would be in and out of reality, like, I don’t know how to explain it, but it felt like my body and, my eyes were like, in different parts. Like, I was looking at my body in the shower. And I don’t like the couple months leading up to it, my stroke. I will always get that.

    Bill 22:13

    So you were getting a feeling like there was something wrong, but you didn’t really know. And it was happening while you’re in the shower?

    Lilia 22:22

    Yeah.

    Bill 22:24

    Every time you had a shower, or just sometimes?

    Lilia 22:27

    Every time I had a bath or shower every time?

    Bill 22:32

    Well, so is it maybe something to do with the amount of heat from the water? Was it like an out of body experience?

    Lilia 22:41

    Yeah.

    Bill 22:44

    And that doesn’t happen still?

    Lilia 22:47

    No, also leading up to my stroke. I had a really fast like irregular heartbeat. And so I was gonna go check that out. And also, leading up to my stroke, I had a wheezing problem. And so they said, it’s probably asthma. Exercise induced asthma, like, go get an inhaler.

    Bill 23:22

    Right. So looking back, there was a couple of things that were happening that at 17, you really don’t really pay attention too much. You tried to get help. You tried to get some advice. But really, it didn’t go much beyond that.

    Lilia 23:37

    Yeah.

    Bill 23:40

    So that wheezing and all those other symptoms that you’re experiencing? Are they things that you experienced still, or are they also not there anymore?

    Lilia 23:50

    Not they’re anymore.

    Bill 23:51

    Not there anymore. Wow. So interesting, did they close the hole in your heart? Or is that still there?

    Lilia 24:01

    And they closed the hole in my heart on January 26.

    Bill 24:12

    But you’re happy that that’s done?

    Lilia 24:13

    Yeah.

    Bill 24:15

    So that decreases the risk of another clot forming because of the PFO.

    Lilia 24:24

    Significantly.

    Bill 24:27

    Almost to zero. So that’s really good. So are you now on blood thinners? Are you taking some kind of medication regularly?

    Lilia 24:38

    Yes, Baclofen, which is a muscle relaxant. Because I have tone in my arm and fingers and the baby aspirin every night.

    Bill 24:55

    Just to keep the blood a little thinner and circulate a little easier. So have you tried to be active since a stroke what has happened with you as far as you’re 17, so you’re probably pretty active, you’re skiing, you’re doing sports, you’re doing all that kind of stuff. What have you been able to do since your recovery?

    Lilia 25:20

    I skied four months after my stroke. And I could only hold the pole in my left hand, not my right. And the challenging part was putting on my ski boots. And so I did that. Plus, I have been working out at the gym. I couldn’t walk for the first two weeks after my stroke, and even more so because I was in a wheelchair when I got home.

    Lilia 26:10

    But I ran a mile in less than 15 minutes last week so yeah.

    Bill 26:28

    So you’re slowly getting back to the things that you enjoy doing? Is running something that you used to do often? Or is it just something that you started recently?

    Lilia 26:39

    I’m running is something that I would do often because before my stroke, I could only take certain links for running because of my asthma. And now I don’t have that anymore. So I can run all links every time.

    Bill 27:14

    Yeah. Wow, isn’t that strange? Now you don’t have asthma. I mean, I’m so glad to hear that. But it’s just so weird that now you don’t. So what was skiing like for the first time since the struggle where you falling over a lot more? How did that go?

    Lilia 27:36

    I didn’t fall over once, but I had to climb up cuz the chairlifts weren’t working. So hopefully I can do that. Once the ski season comes around, and it was weird. It was definitely weird because of my right side, mostly my right leg wasn’t what I remembered. And I was mostly leaning on my left leg.

    Bill 28:40

    So a little bit of a challenge. Something you had to adjust to is a bit different.

    Lilia 28:46

    Yeah.

    Exercise After Stroke


    Bill 28:47
    Yep. How has it been since you’ve come home? Have you had to experience fatigue and all those types of things? Do you get more tired than you used to? And what do you notice about your body? Is it harder to move it when you’re more tired?

    Lilia 29:09

    Yes, my tone increases dramatically. When I’m tired, and I can’t lift like my right like legs towards my back. And it’s completely changed my life because I get more tired more easily. And I get headaches a lot. Almost every day, right now I have a headache.

    Bill 30:13

    Yeah, so it sounds like as your brain gets tired, and you start to notice your deficits a little more, it’s pretty common, I’d say because you’re so young, that your ability to have more stamina will increase your ability to decrease the fatigue will increase, you get better and better.

    Bill 30:36

    And you start to notice things that you can do that you couldn’t do before. I had to stop driving, I had to stop working, I had to stop doing all sorts of things. Are you back driving yet?

    Lilia 30:48

    Yes, I am. I just got my car accommodated, to so to speak. Instead the right gas pedal, it’s on the left because I can drive better with my left, and I have a knob for my steering wheel. And I have to before I can drive solo, I have to get logged 10 hours with my parents. Before I can drive.

    Bill 31:31

    Yeah. Is it tiring to drive now? Do you notice that it’s a lot harder? Because you’re concentrating a lot harder?

    Lilia 31:39

    Yeah, I keep on getting scared, the break is towards the middle, my gas thing is towards the left. So I keep on getting scared that I’m gonna hit the brake and like gas and instead, like, you know what I mean? Like, somebody is in front of you, and you think you hit a brake, but you’re hitting the gas actually so.

    Bill 32:21

    I understand. It’s completely different. And you’ve just recently, you know, you’ve only been driving for a few years. So you’ve just learned how to do it properly. You know, you got to really learn how to do it again.

    Bill 32:33

    I was driving a stick shift beforehand. And because it was my left side, there was effect that I can no longer drive a stick shift, I can feel it. And I can still change gears and all of that. But if I’m tired, then I can’t feel the pedal. And I have been known to instead of press the clutch pedal to press the brake pedal.

    Bill 32:59

    And that’s dramatic. Because if you’re doing any speed in traffic, and you’re trying to change gears, but instead you’re slamming on the brake, the guy behind you is not happy about it at all.

    Lilia 33:13

    Yeah, my boyfriend drives stick shift. And he says, it’s really hard.

    Bill 33:22

    Yeah. And especially that when you can’t feel one of your legs properly it’s even harder. So I gave that away, I got rid of that car, and I changed my car to an automatic transmission.

    Stroke Exercises


    Bill 33:32
    And that makes life a lot easier because my right foot is better than my left foot. And that way, nothing had to change. Nothing had to be different. So it’s a lot easier. So what motivated you to put up your Instagram page? The one where you’re sharing adaptive workouts? How did you come about doing that?

    Lilia 34:03

    I started to look up workouts for stroke survivors. And, basically, it was just a bunch of old people like doing this. And so I said to myself, this has to change, because not all stroke survivors are old people. And so I made the page.

    Intro 34:45

    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 thing should I avoid in case I make matters worse?

    Intro 35:02

    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 35:24

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

    Bill 35:57

    So I noticed in some of your posts, you’re doing push ups and sit ups and all that kind of stuff. And it seems like you have to take a little bit of time to set yourself up. Yeah, so you have to put your right hand down in the correct position, etc. Other push ups easy to do, they’re getting easier as you practice more.

    Lilia 36:22

    I’m not really because I have good days with my toes, and I have bad knees with my toes. And so most of the time, I just do knee push ups. Um, but depending on my toes, it’s not about my core and my toes. You know, when I’m in my coat, your toes curl up, and there’s nothing you can do about it. And so you kind of resort to your knees. So but my arms are getting stronger. So I think that’s because of the push ups and setups and everything else.

    Bill 37:16

    Yeah. What kind of feedback have you had for the page?

    Lilia 37:22

    Keep doing it. I love your workouts. You’re so inspiring. A couple of mean comments saying you had a stroke how true is that? And I know.

    Bill 37:47

    What’s all that about? Like, how does that even happen? What was it from people that were your age? or older than you or?

    Lilia 37:58

    Older than me?

    Bill 38:06

    Because you’re doing exercises or because maybe you didn’t have a stroke?

    Lilia 38:12

    Both I guess mostly because they think I didn’t have a stroke. So why would I lie about that?

    Bill 38:22

    So many other things that you could lie about. Deciding that the thing you’re gonna lie about is having a stroke. Wow, people are crazy. Some people are very bizarre that they would have a problem with you posting exercise videos and saying that you had a stroke? What a strange world. How do you handle that type of negative feedback? You just ignore it or do you respond?

    Lilia 38:54

    I respond saying strokes don’t.

    Bill 39:06

    Don’t discriminate, do they?

    Lilia 39:08

    Yeah, don’t discriminate against age so and I ignore them and block them.

    Bill 39:20

    That’s really interesting. I had an interview I interviewed for Episode 118 Priya Sharma. Who was very young, similar story to you in her 20s like officals 24. She was taking the contraceptive pill at the time.

    Bill 39:40

    And after she took the contraceptive pill and had a stroke, she realized that there may be was a connection and she did go back to the gym and she started exercising and doing powerlifting.

    Bill 39:52

    And one of the things she also said was that people were really negative to her, going back to the gym and exercizing. And that she really didn’t have too much of a stroke or something like they tried to play it down. Like, how could you be back at the gym within a few after your stroke?

    Lilia 40:14

    That annoys me so much.

    Bill 40:18

    And I was so shocked then and I thought, maybe it just happens. You know, in Australia, crazy people say that in Australia, but it sounds like crazy people are everywhere.

    Lilia 40:28

    Yeah.

    Bill 40:28

    I can’t believe it. I can’t get over that. Well. It says more about them that it does you. Isn’t it really interesting that of all the comments that they can make they make that comment.

    Bill 40:43

    And it just goes to show how far we still have to go. To bring awareness to the challenges that people face, you know, whether they are physical challenges, because of stroke or mental health issues that are invisible, then we can’t see.

    Bill 40:57

    We still have a long way to go to bridge the gap between the rest of the community who seems to be completely oblivious, and completely unaware of what people experienced in life and what they go through.

    Lilia 41:10

    Yeah.

    Bill 41:12

    And of all things, why don’t just you be nice instead of mean?

    Lilia 41:16

    I know.

    Bill 41:18

    So easy.

    Lilia 41:21

    Yeah.

    Future plans beyond Exercise After Stroke


    Bill 41:25
    So where do you see yourself? I know, this is a really, you know, weird question. But where do you see yourself in the next five years? Like, what are you trying to overcome and achieve? And what are some of the goals that you’d like to fulfill?

    Lilia 41:38

    I want to go to med school. I doubted myself, because people told me that you have to have two hands to go to med school, and you actually don’t. So I’ll see about that when I get to med school. And yeah, I hope to continue to keep ski coaching once I get back on my feet, I’m taking a year off for myself to get back in the game. And hopefully next year, I will continue to be coaching. And yeah.

    Bill 42:41

    That’s beautiful. If you get to med school, there’s so many things that you can do. That don’t need to handsome, it’s such a silly thing to say. Unless you’re planning on being a brain surgeon.

    Bill 42:55

    Maybe then you really need two hands. But until then, there’s so many things you can do that don’t require two hands in medicine. So it would be awesome to have a stroke survivor, be also a neuroscientist.

    Bill 43:11

    Because, you know, you’ve got a lived experience of what it’s like to have a stroke. And I think you would offer amazing insight. And you would be much lovelier doctor to be around. Because you get it you know, what’s going on? You know what it’s all about. What has been some of the hardest things what’s been the hardest thing for you to deal with and manage during the stroke?

    Lilia 43:44

    My speech is hard. I took see here it goes again. I have spent countless hours of intensive speech therapy to get to where I am now and my arm. My fingers have not yet opened up, and I’m hoping that would with botox injections in my arm. That and intense physical occupational therapy, my fingers will open up, but I can’t braid. I can’t cut.

    Bill 44:43

    It’s not happening yet. I noticed that you’ve used the Saebo glove. Is that something that you use often? Is that part of your kit?

    Lilia 44:53

    Yeah. I have plenty of things in my kit. But Bioness is one of them. Saebo glove is one of them. It lets your fingers like, take a break once in a while because it opens up your fingers with these rubber bands. And you can do grab things more easily. And, yeah.

    Bill 45:37

    And is it something that you use during the day? Or is it something that you use at the end of the day? Or do you just use it all the time?

    Lilia 45:47

    Depends on how my tone is. And also, if I’m working out, if I’m working out at the gym, I don’t use it, because it keeps me from my grip Isn’t that great and so with a Saebo glove, it’s really not that great. So I can’t hold the weights and stuff. But for open exercises like a downward dog, I’ll use it.

    Bill 46:23

    Yeah. It seems like it’s a pretty, it’s not that complicated. Is it? It just seems like you put it on and you adjust it. Put it into any position. Is it terribly expensive? What do they cost?

    Lilia 46:41

    $300. But I got a deal on I contacted Saebo, and they said, Here’s 25% off until July. And that’s expired. So you could get, I could contact Saebo to see if they will give me the 25% off for life.

    Bill 47:26

    You’re saying it’s worth contacting them if anyone’s listening and the thought of getting a Saebo glove worth contacting them and saying, Hey, give me a discount?

    Lilia 47:37

    Yeah.

    Bill 47:38

    Yeah, fair enough. Hey Lilia, I’ve had a real good time chatting with you and learning a little bit about you. I really appreciate you coming on the show. Thank you so much for sharing your story and for creating a page on Instagram, that’s about exercises for stroke survivors.

    Bill 47:58

    There needs to be more about that. All the best with your recovery. I hope everything goes well. And I look forward to interviewing you when you enter into a course to become a neuroscientist.

    Lilia 48:15

    Thank you so much for having me on the show.

    Intro 48:22

    Discover how to heal your brain after stroke go to recoveryafterstroke.com.

    Intro 48:31

    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 48:48

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

    Intro 49:08

    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 49:08

    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 49:08

    If you are experiencing a health emergency or things you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 49:08

    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 Exercise After Stroke – Lilia Artimenia appeared first on Recovery After Stroke.

    50 min
  • Living With Aphasia After Stroke – Jack Breitenstein

    Jack Breitenstein is recovering from a ruptured AVM, which placed him in a coma at the age of 15 and now 3 years later joins the recovery after stroke podcast to discuss aphasia after stroke.

    Socials

    www.instagram.com/jack_breitenstein/

    Highlights:

    01:12 Introduction

    05:27 Arteriovenous malformation
    13:01 Speech improvements
    20:38 Courage to be on the podcast
    28:05 The Pitch
    34:04 Fatigue
    41:31 Being treated differently

    Transcription

    Bill 0:00

    Some people who I’ve contacted on the podcast who had aphasia were not interested in coming onto the podcast because they couldn’t complete the conversation in the way that they felt comfortable. I sent you a message. Do you want to be on the podcast? And you said yes. straightaway. What makes you say yes.

    Jack 0:25

    Well, I get an opportunity for you and me and a chance to be on a podcast.

    Bill 0:46

    So it’s an opportunity for you and me to meet and it’s a good chance to be on a podcast yeah?

    Jack 0:51

    Yeah. and challenging.

    Bill 0:53

    And it’s challenging you?

    Intro 0:59

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

    Introduction


    Bill 1:12
    Bill from recoveryafterstroke.com This is Episode 127. And my guest today is Jack Breitenstein. At the age of 15, Jack experienced bleeding in the brain after an AVM he had from birth burst, causing jack to go into a coma and experience seizures after he woke.

    Bill 1:33

    Now, this episode is a very special one. And it’s probably my favorite episode for the year, coming up to the end of the year. I know, I’m not supposed to have a favorite episode. Because every guest on the podcast is an amazing person who’s made an effort to come on and share their story in the hope that it’ll make a difference to other people.

    Bill 1:59

    And podcast guests and episodes, they’re like children, you can’t really have a favorite one, and you’re not allowed to choose. But in this particular case, I’m gonna make an exception. And the reason being is because Jack came onto the podcast. And you will notice when the interview commences, that he has aphasia.

    Bill 2:21

    And it’s quite difficult for Jack to go through the process of having a conversation completing sentences. And it is an amazing thing that he’s on the podcast because I’ve reached out to many stroke survivors that have aphasia who haven’t been able to be guests on the podcast.

    Bill 2:41

    And I completely understand the reasoning behind that. But as soon as I reached out to Jack and asked him if he would like to be on the show, he straight away said yes. And we made it happen really, really quick. I just love his enthusiasm, his willingness to participate, regardless of the things that he’s experiencing.

    Bill 3:02

    And during the interview, we’ll get to hear about some other ways that he has continued to participate and go out of his way to challenge himself so that he can prove and encourage others. So as we come to the end of 2020, it’s been a very challenging year.

    Bill 3:20

    And nonetheless, stroke survivors have turned up to get this podcast to the point of having more than 120 episodes, where you can listen to other stroke survivors talking about what happened to them at the beginning, how the recovery is coming along, and what has happened over the years as recovery has continued.

    Bill 3:47

    And it’s really important that you understand the way that each podcast is structured. And the reason being is because I want to make the story give importance to the episode that occurred. But then also, I want to paint the picture of how recovery continues to happen over the months and years post-stroke, regardless of people’s deficits and experiences and the things that they struggle with.

    Bill 4:14

    They’re still able to get back into life, they’re still able to become active members of their community, and they’re still able to achieve their goals and fulfill their passions. So thank you for being with me on this journey in 2020. This crazy Coronavirus a year and I really appreciate all the feedback that I get. And I really appreciate having you as my listener.

    Bill 4:41

    I really appreciate having you as somebody who has reached out and asked me questions. I really appreciate the people that have come on board as coaching clients. And together I really believe that we can find a way to overcome the deficits and the challenges that Stroke has created for us, and in spite of that, continue to have a really fulfilled life. So thank you once again. And without further ado, it’s on with the show. Jack Breintenstein, welcome to the podcast.

    Bill 5:17

    Welcome mate thank you for being here. I really appreciate it.

    Jack 5:21

    You’re welcome.

    Bill 5:22

    Tell me a little bit about what happened to you.

    AVM Recovery


    Jack 5:27
    Well, I had a stroke three years ago, and well, first week after my birthday.

    Bill 5:51

    You had a strike three years ago after your birthday. How did you turn?

    Jack 5:55

    Oh 15.

    Bill 6:03

    Okay do they know what caused the stroke at 15?

    Jack 6:07

    Oh, yeah I had a brain injury AVM.

    Bill 6:28

    You had an AVM arteriovenous malformation?

    Jack 6:32

    Yeah.

    Bill 6:34

    And the AVM burst? Is that what happened?

    Jack 6:38

    Yeah.

    Bill 6:42

    Before burst. Did you have any idea that this thing was in your head? Did you have any symptoms headaches, anything like that?

    Jack 6:52

    No this happened (inaudible)

    Bill 6:59

    What do you remember? about the time that it burst? Were you with it? Or did you just wipe you out?

    Jack 7:10

    Just wiped me out just black.

    Bill 7:16

    Just black. Did you have headaches? Or did you feel any symptoms, nausea or anything like that?

    Jack 7:21

    Oh, I play soccer. And late afternoon, I had a bad headache. And I fell down in my mom’s room and I collapsed.

    Bill 7:52

    You play soccer. You had a bad headache. And you collapsed.

    Jack 7:56

    Yeah, yeah.

    Bill 7:58

    And your mom was with you?

    Jack 8:07

    Yeah. My parent’s room.

    Bill 8:16

    You’re in your parents room and you fell. You collapsed. And they took you to the hospital?

    Bill 8:21

    Yeah, yeah.

    Bill 8:24

    And then do you remember waking up after that? What was that like?

    Jack 8:35

    I had a seizure and three weeks comma.

    Bill 8:51

    So you were in a coma for three weeks?

    Jack 8:54

    Yeah. Yeah.

    Bill 8:55

    Wow, man. And then you woke up from the coma? And were you aware of your situation where you were? Did you know that you were in hospital or?

    Jack 9:11

    No.

    Bill 9:13

    As well as not being able to speak. Did you have challenges not being able to move as well?

    Jack 9:20

    Yeah, two after the coma after two and a half months at the hospital. (inaudible)

    Bill 9:56

    So you were in the hospital and then after you woke up from the coma, you had multiple seizures?

    Jack 10:02

    Yeah. No. No. Two days at the hospital

    Bill 10:11

    Two and a half days at the hospital.

    Jack 10:13

    Yeah.

    Bill 10:14

    That’s all just two and a half days?

    Jack 10:16

    No months.

    Bill 10:18

    Wow. Ok so you were at the hospital, in a coma. And then you also experienced seizures. Is that right?

    Jack 10:27

    Yeah rehab.

    Bill 10:31

    And then you did rehab to learn how to walk again and use your arm again?

    Jack 10:36

    Learn how to wheelchair, and then cane and then walk by yourself.

    Bill 10:44

    Right. Okay.

    Bill 10:47

    And now I saw you before walk to the back of the room there with out any trouble. Is there any other issues associated to your walking?

    Jack 10:57

    And no. I walk by myself.

    Bill 11:02

    How long did it take you before you went back to school?

    Jack 11:08

    September six months?

    Bill 11:15

    Was it difficult going back to school?

    Jack 11:20

    Yes.

    Bill 11:24

    What were some of the hardest things for you to adjust to when you went back to school?

    Jack 11:39

    Oh I had my cane and walk and elevator and crowd in the hallways.

    Bill 11:55

    So going back to school was quite challenging, was it difficult getting back involved with your friends and starting where you left off?

    Jack 12:12

    Yeah, my friends, I had a friend. Same friends. (inaudible) And stroke is hard.

    Bill 12:34

    Stroke is hard yeah?

    Jack 12:35

    Yeah.

    Bill 12:37

    How long has it beens since you had the stroke? How many years ago? Was that?

    Jack 12:44

    Three and a half.

    Bill 12:46

    So now you’re nearly 18 years old?

    Jack 12:54

    Yeah. But it was awesome.

    Speech improvements with Aphasia After Stroke

    Bill 13:01

    When you went back to school, did you have the ability to communicate like you can now? Or was it less of an ability at that time when you’re still recovering?

    Jack 13:11

    Well step by step. Like, three days ago, talking was difficult, but in a long way I’ve done speech therapy all the time.

    Bill 13:36

    Yeah. And is your speech improving all the time and still improving?

    Jack 13:41

    Yes, yes.

    Bill 13:44

    Yeah, and you’re happy about that?

    Jack 13:48

    Yeah.

    Bill 13:49

    When does speech become difficult? Is there times during the day where your speech becomes more difficult. Say then at the beginning of the day do you get tired and then does that make it harder to get words out?

    Jack 14:05

    Yeah, sometimes. Speaking sentences and long words (inaudible)

    Bill 14:34

    What some of the most difficult times I’ve tried to communicate to people do you find some people struggle to understand you? Does that make them impatient and how have you managed those types of scenarios?

    Jack 14:47

    Um, well, friends, I know before I know it’s hard Before, but friends three, years long was someone talking and talking more now.

    Bill 15:17

    You’re talking more now?

    Jack 15:19

    Yeah.

    Bill 15:21

    And with aphasia, it’s not a problem understanding me. It’s just a problem making the words come out of your mouth. Is that how you would describe it?

    Jack 15:31

    Yeah, yeah.

    Bill 15:36

    So it’s just getting the words out is the hardest part is that the words are here, but they don’t come here. How is it for you?

    Jack 15:50

    Speaking languages is hard. (inaudible)

    Bill 16:08

    So the information is here. Sometimes getting it out of your mouth is a little bit hard.

    Jack 16:14

    Yes.

    Bill 16:16

    Okay. So when you went back to school, were you able to focus and concentrate on your studies? Did you find it easy to go back and learn the things that you were learning? As a 15-year-old and 16-year-old?

    Jack 16:36

    Well, no because I’m speaking, more speaking now. Because before speaking one word or two words. But now, there’s a speaking now at school.

    Bill 17:19

    So you went back to school? Did you complete your schooling? Have you finished that now? Or are you still at school?

    Jack 17:26

    Still at school freshman year.

    Bill 17:51

    So you missed one year of school because of the illness because you’re in hospital? And then you went back and you’re continuing with your studies? Are you nearly finished? When do they finish?

    Jack 18:08

    Oh, so another year.

    Bill 18:17

    Another year or so?

    Jack 18:18

    Yeah.

    Bill 18:20

    Do you have any thoughts about what you might do when you finish school? Are you going to continue studying? Or are you looking for opportunities to work?

    Jack 18:33

    In college speaking sentences is hard to but yeah, I’m thinking college.

    Bill 18:49

    So you’re looking at college. Awesome. And do you have some tools that help you communicate with people to speak? Is there some kind of a piece of software or an app or a machine that helps you get words out that you can’t get out?

    Jack 19:06

    Yeah, apps that can read aloud.

    Bill 19:17

    Like a translation app that speaks the words that you’ve typed in into the app? Is that right?

    Jack 19:23

    Yeah.

    Bill 19:27

    So you have some ways to overcome some of the challenges with getting words out of your mouth. That makes it a lot easier because people before you many years ago, they didn’t have all these tools that are available.

    Jack 19:44

    Yeah. This is how, because speaking is hard but through apps can make a change.

    Bill 20:00

    Yeah, you got the apps and they help you. So what will you study? When you go to college? What do you hope to study?

    Jack 20:13

    I don’t know now but, now I’m hoping to math and I don’t know.

    Bill 20:34

    Are you good at numbers?

    Jack 20:36

    Yeah.

    Courage to be on the podcast


    Bill 20:38
    That’s awesome, man. So some people who I’ve contacted on the podcast before, I’ve contacted some people who had aphasia, were not interested in coming on to the podcast because they couldn’t complete conversation in the way that they felt comfortable. And I sent you a message. Do you want to be on the podcast? And you said yes, straight away. What makes you say yes?

    Intro 21:05

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I actually recover? What things should I avoid in case I’ll make matters worse?

    Intro 21:24

    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 21:47

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

    Jack 22:10

    Well, I get an opportunity for you and me and a chance to be on a podcast.

    Bill 22:34

    So it’s an opportunity for you and me to meet. And it’s a good chance to be on a podcast yeah?

    Jack 22:40

    Yeah. It’s challenging.

    Bill 22:43

    And it’s challenging you. Okay, so you like a challenge you like it when people give you a challenge to make things hard for you so that you can practice and get better?

    Jack 22:56

    Yes.

    Bill 22:58

    Okay. So what other things are challenging for you to do that help you get better?

    Bill 23:03

    Walking is hard, because walking is fine, but running is hard cause running in soccer and baseball me I don’t run as much as I used to. And I climbed the Sears Tower.

    Bill 23:34

    You climbed the Sears Tower recently?

    Jack 23:52

    Two years ago.

    Bill 23:54

    Two years ago, the Sears Tower is massive man.

    Jack 23:58

    Yeah it is.

    Bill 24:01

    How tall is it? You know?

    Jack 24:10

    104 flight of stairs.

    Bill 24:15

    Wow how long did that take you?

    Jack 24:20

    One hour and 30 minutes.

    Bill 24:23

    One hour and 20 minutes?

    Jack 24:27

    30 minutes.

    Bill 24:37

    That’s huge man. I wouldn’t be interested in climbing the Sears Tower it’s way too tall for me. Which city is the Sears Tower in?

    Jack 24:57

    What?

    Bill 24:58

    Which city is the city tower in?

    Jack 25:03

    What do you mean?

    Bill 25:05

    Where is it located? The Sears Tower? The Sears Tower that you climbed where is it?

    Jack 25:19

    Chicago?

    Bill 25:20

    In Chicago?

    Jack 25:21

    Yeah.

    Bill 25:22

    Wow, man, that’s pretty insane. I wouldn’t be interested in climbing that many flights of stairs. I’m happy to climb two or three. But that’s about it. Now was that a some kind of a charity organized event or how come you’re allowed to even climb the Sears towers? How does that work?

    Jack 25:45

    Shirley Bryant affiliate of hospital.

    Bill 25:51

    So it’s organized with the hospital.

    Jack 25:53

    Yeah.

    Bill 25:55

    And do they make it a fun event for people to attend if they wish?

    Jack 26:00

    Yes.

    Bill 26:01

    And is it a fundraising event? Do you raise money for the hospital?

    Jack 26:06

    Yes.

    Bill 26:07

    How much money did you raise?

    Jack 26:15

    How much?

    Bill 26:16

    How much money? Did you raise?

    Jack 26:20

    $1,000.

    Bill 26:21

    1,000 dollars?

    Jack 26:23

    Yeah.

    Bill 26:23

    Man, that’s a good effort. Well done. That’s so good to hear. It’s 110 stories. Oh no it’s not I was trying to find it on the internet here.

    Bill 26:44

    Sears Towers height. It’s 422 meters high, and it’s 527 meters to the tip. So it’s quite high wow. So when you go to college, and study maths. What do you hope to do with that? Do you hope to begin work in a particular career? Or is there something that you’re aiming for?

    Jack 27:35

    Yes. Math, this is challenging but I’m still yeah, it’s challenging.

    Bill 27:59

    Tell me, what are your hobbies? What do you enjoy doing when you’re not studying Or climbing up stairs?

    The Pitch


    Jack 28:05
    I like to play soccer, and baseball, and I threw out a pitch at Wrigley Field.

    Bill 28:27

    You threw out a pitch recently?

    Jack 28:30

    Yeah Wrigley Field.

    Bill 28:33

    At Wrigley Field?

    Jack 28:37

    Cubs yeah.

    Jack 28:38

    At the Cubs?

    Jack 28:40

    Yeah.

    Bill 28:40

    You threw out the pitch at the Cubs.

    Jack 28:42

    Yeah.

    Bill 28:44

    Wow, man. That’s pretty cool. So how did you get to do that?

    Jack 28:51

    Oh, my mom she reached out to the Cubs manager. And yeah.

    Bill 29:16

    Well, man, that’s so cool. There’s not many people have done that.

    Jack 29:20

    Yeah.

    Bill 29:22

    Hey tell me are the cubs any good at baseball?

    Jack 29:30

    Maybe.

    Bill 29:32

    They used to be the worst team in the league.

    Jack 29:35

    Yeah.

    Bill 29:38

    And then they won the World Series.

    Jack 29:40

    Yeah.

    Bill 29:41

    How amazing was that when they won the World Series? How many years did they wait to win the World Series? How long did it take them to get to that point?

    Jack 29:56

    Well, 100 years?

    Bill 30:03

    100 years? It’s an amazing story for if you continue focusing on your goal, maybe you’ll eventually get there.

    Jack 30:13

    Yeah.

    Bill 30:14

    Never give up.

    Jack 30:16

    Yes.

    Bill 30:18

    Who’s your favorite player?

    Jack 30:23

    Well, actually the cubs and cardinals are against each other.

    Bill 31:05

    Alright, what? I missed that so say that again? Who’s your favorite player?

    Jack 31:10

    Well, I like the Cardinals.

    Bill 31:16

    You like the Cardinals?

    Jack 31:18

    Yeah.

    Bill 31:20

    You like the Cardinals but you through the pitch at the Cubs?

    Jack 31:23

    Yeah.

    Bill 31:24

    So which is your team? Is it the Cubs or the Cardinals?

    Jack 31:29

    Cardinals.

    Bill 31:33

    So the Cardinals who are they?

    Jack 31:40

    Oh, yeah. St. Louis.

    Bill 31:47

    Okay. And the cubs, and the Cardinals are rivals, aren’t they?

    Jack 31:53

    Yeah, yeah.

    Bill 31:55

    Okay. So when you threw the first pitch at the Cubs, were they playing the Cardinals that day?

    Jack 32:02

    Yes.

    Bill 32:04

    Right. Okay. So, you got to be on the ground with your team, the Cardinals at Chicago?

    Jack 32:13

    Yeah.

    Bill 32:14

    Okay. That’s brilliant man. And tell me about who won that day. Which team won your team or the Cubs?

    Jack 32:23

    The Cubs.

    Bill 32:26

    The Cubs won?

    Jack 32:28

    Yeah.

    Bill 32:31

    Well, nevermind, at least you got to throw the first pitch. Who’s your favorite player? Then at the Cardinals?

    Jack 32:40

    Oh, yeah. Yadier Molina.

    Bill 32:44

    All right. How do we spell that?

    Jack 32:46

    Yadier Molina, Y.

    Bill 33:06

    He looks like he’s a decent player yeah? He has had so far 2001 hits, he has had 160 home runs, he has runs battered 932, and he has a batting average of 281.

    Jack 33:34

    Yeah.

    Bill 33:35

    That’s pretty good. Did you get to meet any of your favorite players that day?

    Jack 33:42

    Oh, Yadier Molina, I gonna toss up and he caught it and yeah.

    Bill 34:00

    You got to meet Yadier Molina?

    Jack 34:02

    Yeah, yeah.

    Fatigue and AVM Recovery

    Bill 34:04

    That’s pretty cool, man awesome. Tell me when we have conversations like this that lasts a long time. Does that make you tired?

    Bill 34:16

    Well, no, no.

    Bill 34:28

    No it doesn’t make you tired. So you don’t experience fatigue or is fatigue also something that you experience?

    Jack 34:37

    Like a baseball game. Me I am ready (inaudible)

    Bill 34:52

    Okay, so you’re ready to play baseball?

    Jack 34:58

    No I’m tired later than usual.

    Bill 35:06

    Okay, so at the moment, you’re getting tired later than usual.

    Jack 35:09

    Yeah.

    Bill 35:10

    So there’s less tired and less fatigue at the moment.

    Jack 35:14

    Yeah.

    Bill 35:16

    Okay. At the beginning, did you used to be very easily fatigued and tired?

    Jack 35:24

    Yes.

    Bill 35:27

    And that’s improved over time?

    Jack 35:32

    Yes. Yeah.

    Bill 35:35

    That’s good. So that should continue to get better and better. Do you still go to speech therapy?

    Jack 35:45

    Ah, yeah.

    Bill 35:50

    How many times? How many times a week?

    Jack 36:00

    Once a week.

    Bill 36:02

    Once a week?

    Jack 36:04

    Four weeks.

    Bill 36:07

    Four hours a week?

    Jack 36:09

    No, four a week.

    Bill 36:14

    Four times every week?

    Jack 36:16

    Yeah.

    Bill 36:17

    Okay. And do you practice your therapy at home as well? When you’re in your room on your computer? Is there other tools that you use? Or do you just do that at therapy?

    Jack 36:35

    Yeah. Physical therapy, We’re not sure but it shows by the stretching and listening. and it helps improve.

    Bill 36:54

    And so you do stretching and physical therapy as well?

    Jack 37:00

    Yeah. Yeah.

    Bill 37:05

    Are there some things that you prefer to do? Instead of other things? Do you enjoy doing the stretching and the physical therapy? Is that good for you?

    Jack 37:15

    Yeah.

    Bill 37:22

    How’s your memory? Do you have any dramas with the memory?

    Jack 37:28

    No. Well, no.

    Jack 37:37

    Yeah. I had a seizure.

    Bill 37:44

    Recently, you had a seizure recently?

    Jack 37:46

    No, back in the day. Two seizures.

    Bill 37:53

    Two seizures. But your memory is okay these days?

    Jack 37:58

    Yeah.

    Bill 38:01

    Awesome, man. What do you love to do when you’re not playing soccer? What do you do? Do you play games on the computer? Do you enjoy online?

    Jack 38:14

    My hand is hard to control. But I play video games yeah.

    Bill 38:27

    And which is the affected hand? Is it the left hand or the right hand?

    Jack 38:32

    Left.

    Bill 38:34

    Your left hand is affected.

    Jack 38:36

    Yeah. No, the other one.

    Bill 38:39

    The right hand is affected. Yep. So your AVM was on the left side of your brain. And did you have surgery to remove it the AVM?

    Jack 38:57

    Yes. They took it out.

    Bill 39:01

    They did? Was it a big hole in your head?

    Jack 39:11

    No. Small.

    Bill 39:18

    Yeah, I had similar surgery they made a small hole in my head. Do you have siblings, brothers and sisters?

    Jack 39:29

    Younger brother.

    Bill 39:35

    So when I had surgery on my head, and they opened up my skull it was proof to my older brother that I had a brain because he used to say grow a brain all the time to me. So I proved to him for the first time that I actually did have a brain because we saw it. Other people saw it. So how old was your brother at the time?

    Jack 40:02

    Oh 13.

    Bill 40:06

    He was 33 years younger than you?

    Jack 40:09

    Yeah. Yeah.

    Bill 40:11

    Is he a good younger brother? Does he help out?

    Jack 40:13

    Yeah. He was pretty well. They were me and father play (inaudible)

    Bill 40:24

    Yeah, is he supportive, or does he still give you a hard time like all younger brothers do?

    Jack 40:34

    Yeah.

    Bill 40:39

    That’s good. That’s his job. What would you like to tell people who might be listening to this podcast? About some of the challenges that you have with aphasia? What is the message that you would like them to have about people who have aphasia?

    Jack 41:02

    Well, still smile.

    Bill 41:14

    Still smile. Yeah, of course. And it’s just a communication issue. It’s not an issue with the other parts of the brain.

    Being treated differently


    Bill 41:31
    And do people treat you differently? Because of your voice?

    Jack 41:37

    Oh, yeah.

    Bill 41:48

    Is that frustrating make it difficult for you sometimes?

    Jack 41:51

    Yeah. It’s difficult.

    Bill 41:53

    Are some people mean and nasty?

    Jack 42:00

    Oh, no.

    Bill 42:05

    That’s good. Man. I really want to thank you for saying yes to being on the podcast. Man. I really, truly appreciate it. I think it’s an amazing thing that you’ve done by coming onto the podcast.

    Jack 42:17

    Thank you for being here.

    Bill 42:21

    You’re welcome. And hopefully, what this does is get the message out to people who are listening about some of the challenges that people with aphasia face. And how brave it is for people with aphasia to get onto a podcast like this and have a conversation with me.

    Bill 42:38

    I think it’s amazing. I’ve encouraged many people with aphasia to come on to the podcast, but most of them prefer not to and I understand that’s perfectly okay. I think you’re doing a great thing for that community, because they need to feel that it’s okay to be brave. And to come onto a podcast and talk about some of the challenges.

    Jack 43:01

    Yeah. It’s hard and but it’s difficult.

    Bill 43:09

    It’s difficult, but it’s getting better?

    Jack 43:11

    Yeah.

    Bill 43:14

    Well done, Jack. Man, I really appreciate it. What I’ll do is I’ll edit this. And I’ll put it together. And I’ll send it across to you so you can have a listen to it.

    Jack 43:25

    Okay.

    Bill 43:25

    And tell me what you think. And then I’ll also post it on social media and tag you into the post.

    Jack 43:32

    Right yeah.

    Bill 43:34

    And you can share it and let people know that you are on the podcast, as well.

    Jack 43:38

    Yeah. Thank you.

    Bill 43:40

    If there’s anything you need from me, if I can help you with anything, I’m in Australia, I’m quite far away.

    Jack 43:46

    Australia.

    Bill 43:47

    Yeah. There’s lots of things I can’t help you with. But if there’s something that I can help you with, just reach out and let me know.

    Jack 43:55

    Thank you.

    Bill 43:56

    Hit me up on Instagram or email.

    Jack 43:59

    Okay.

    Bill 44:02

    Enjoy the rest of your, is it nighttime there now?

    Jack 44:06

    No. It’s still noon.

    Bill 44:12

    It’s daytime or night time there.

    Jack 44:18

    Yeah

    Bill 44:20

    Yeah. Enjoy the rest of your night. My day has just started. It’s 10 o’clock in the morning here. All the best Jack, thank you so much for being on the podcast. I’ll get this back to you. In the next week or two.

    Jack 44:35

    Oh, yeah. Thank you.

    Bill 44:43

    You’re welcome, mate. Thank you. See ya.

    Intro 44:57

    Discover how to heal your brain after Stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 45:24

    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 45:41

    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 46:01

    Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

    Intro 46:15

    If you are experiencing a health emergency or things you might be called triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 46:31

    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 Living With Aphasia After Stroke – Jack Breitenstein appeared first on Recovery After Stroke.

    47 min
  • Diabetes and Progressive stroke – Joe Cassaniti

    Diabetes and progressive stroke – Joe Cassanitit sometimes didn’t take his diabetes diagnosis seriously. The decision to stop taking his medication resulted in a brain stem, progressive pons stroke.

    Socials:

    www.instagram.com/peppes_pasta/
    www.facebook.com/peppespasta

    Highlights:

    01:02 Introduction

    04:02 No signs of stroke
    09:10 What is neuropathy
    17:26 Complacency
    23:24 Progressive stroke
    32:58 Mental Scars
    39:02 Emotional Scars
    47:33 Healthier than ever

    Transcription:

    Joe 0:00

    This doctor called Dr. Charles. I called him over and I said, I feel like I’m going to pass out again. And he was looking at the machine I was wired to a machine there. And he said to me, Joe, your numbers look fine. And within a matter of seconds, I’ve crashed again.

    Joe 0:21

    So the doctors knew it was actually quite odd for them to have a conscious patient, telling them that I was going to pass out. So as the doctors did gather around, I remember Dr. Charles saying to all the other nurses and doctors if Joe tells you that he’s gonna pass out, believe him because he’ll tell you before the machines do.

    Intro 0:49

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

    Introduction


    Bill 1:02
    Bill from recoveryafterstroke.com This is Episode 126. And my guest today is Joe Cassaniti. At the age of 48, Joe, a father of two and a husband, and a fresh pasta manufacturer experienced a progressive stroke in the pons area of his brainstem.

    Bill 1:21

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:32

    I too am a three-time stroke survivor and a brain surgery survivor. And I’ve built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 1:43

    Support packages give you access to a variety of tools 24 hours a day, seven days a week so that you can also work on other areas of stroke recovery, that you don’t get the chance to at physical therapy or rehabilitation.

    Bill 1:57

    With tailored support available for less than $8.50 per week, all recovery after stroke support packages will bring stroke recovery to you in the comfort of your own home to try out recovery after stroke support and see if it is right for you, you will get the first seven days free, as well as a 30-day money-back guarantee no questions asked.

    Bill 2:17

    As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. It won’t cost you anything for the first seven days and you will get a full refund. If you are not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show. Joe Cassaniti. Welcome to the podcast.

    Joe 2:41

    Thank you. Thank you for having me.

    Bill 2:43

    My pleasure. Tell me a Joe a little bit about what happened to you?

    Joe 2:48

    And let’s see, April 15 2019, my life changed forever, I was at home on a Sunday and I was with my wife doing some work if you do, and we were just sitting opposite of each other.

    Joe 3:06

    And she noticed that my speech wasn’t the best. And I was struggling myself. And we kind of got to the point at the same time. But we didn’t make anything of it. And I thought I was just tired because I was making some pasta the day before. So I went ahead and rest on the lounge and woke up again noticed that I lost my balance.

    Joe 3:36

    And i then said to Antoinette there is a problem, Antoinette is my wife by the way. I said let’s go to the hospital because this is not right. And I’m not feeling at my best so my balance was a problem. My speech was a problem. So we went straight to RPA.

    Bill 3:57

    Royal Prince Alfred Hospital in Sydney.

    Joe 4:00

    Yeah.

    Joe Cassaniti had no signs of stroke


    Bill 4:02
    And did you have up until that day that’s Sunday did you have any signs now looking back? Obviously, this is the recovery after stroke podcast. So I know why you’re here. I know that you had a stroke. Was there any signs leading up to that particular day? that something wasn’t right? Did you feel off at all?

    Joe 4:21

    No. I felt okay. So as I mentioned Saturday I worked, Sunday morning, I’m at home and I was just doing some work on the computer on the dining table. And none, the other thing was that the stroke was incomplete. It was only just the start of the problem. There were several other complications which happened later on when I got in to hospital.

    Bill 4:53

    Okay, so how old were you?

    Joe 4:58

    48.

    Bill 4:59

    48 so you’re in good health mostly. You’re running your own business. It’s a pasta business yeah?

    Joe 5:10

    Yeah, like fresh pasta.

    Bill 5:11

    What are your hours like? Before the April day in 2018, what were your hours like?

    Joe 5:19

    I was working Monday to Friday, I did do occasional Saturdays. And we were busy time. So I had to work Saturday to make some snocky and I went home that afternoon and got around the house. And the next day is yeah, but it’s usually Monday to Friday. 7am to 5pm.

    Bill 5:53

    Yep. So what’s going on with the rest of your life? Children, family, all that kind of stuff. What’s that? Like?

    Joe 5:59

    I’m a dad of three boys. Matthew and Alex 22 years old. And little not so little is 18? And I work not far from home. So it’s just a walk up the street for me to head to the pasta factory. And enjoy life.

    Bill 6:25

    Yeah, nice, man. So life is just a regular standard suburban life, a business kids around the place. Things are generally busy for people like us. Mostly there’s things to do, there’s people to keep happy, and there’s deadlines to meet and all that kind of stuff. Are you the kind of guy that was looking after his health? Would you say that in your 48 years up until then, were you the type of guy that was paying attention to your health and well being?

    Joe 6:58

    That would be a bit negative. I didn’t because time pressures, being complacent, I was diagnosed as a diabetic when I was 30. And I thought I was invincible. So I wasn’t really proactive in looking after my diabetes. My diabetes is a little awkward. It’s not exactly type two. And it’s not type one, but I’m tablet and insulin dependent.

    Joe 7:35

    So I was being a cheeky boy and not taking my insulin when I’m supposed to. So I ran ridiculous sugar levels. And so the stroke is brought on by my carelessness with my health. For me, everything else was going on in my life, my family, my business. So I didn’t get much of a chance to look after myself.

    Bill 8:03

    What is it with that Joe? Because you’ve got time to do all that other stuff. But put a tablet in your mouth and swallow it. You don’t have time to do that. What do you think is going on in your head to say, I’ve got no time for that?

    Joe 8:20

    Well, I thought I was invincible truly. I thought I was invincible. I never ever thought that I would have a stroke. I didn’t know you could get a stroke from out of control diabetes, we learned a little too late.

    Bill 8:41

    So that’s interesting. So what did you know that could happen about your diabetes? So if left untreated and you weren’t on top of it? What were the risks of diabetes? Did you have any idea?

    Joe 8:52

    Sight, neuropathy, obviously drinking a lot of water. I just wasn’t aware that I could put myself at risk of having a stroke.

    What is neuropathy – Joe Cassaniti

    Bill 9:10

    So what’s neuropathy?

    Joe 9:13

    Neuropathy means you start to lose sensation in your extremities, so your feet, your eyes, and your hands. So it’s just losing sensation.

    Bill 9:26

    Did you ever find that you experienced any of that stuff while you were not taking your medication?

    Joe 9:31

    Look, I did. It was mostly my vision. But it fixed itself after I took insulin. So it wasn’t that I wasn’t taking my medication. I just wasn’t taking it regularly.

    Bill 9:46

    How long would you say was the time when you’re being slack on it? That you weren’t taking it regularly?

    Joe 9:53

    Well, there was a time that I was really looking after my health. I go to a gym. I love lifting weights. I kind of kept my sugars at bay, I was being active physically, and that helps with lowering sugars.

    Joe 10:10

    But look, it would get between two and three months that I’ve been on and off, and then I’ll be religious back on. And you can’t have highs and lows, because that’s even more dangerous.

    Bill 10:27

    Yeah. Did you find that time when you were religious, was it less business going on in your life? Was there less deadlines, less things to achieve? Or did somehow your mindset changed that allowed you to be more on your game?

    Joe 10:44

    Look, the business was always there. And I was constantly thinking about work. Even at home, I’d be going home wondering what items we need to make next day, customers placing large orders.

    Joe 11:04

    So you would have busy days, you would have not so busy days, so on not so busy days, or probably pay more attention to my health. You know what, getting up at six o’clock in the morning, sometimes I go down to the gym trying to beat and then hit back into work.

    Bill 11:24

    Yeah, I know that type two diabetes is very much responsive in a positive way to weight bearing exercises. So even if you’re not trying to make muscle or, you know, become Arnold Schwarzenegger, you will get a really good result by converting that energy from sugar into energy to go into the muscles, so the muscles can actually lift the weight, right.

    Bill 11:49

    So I know that’s really good for you. And usually with type two diabetics, they say, change your diet now the science around that is shifting because previously, it was just a what you’re eating and just take your insulin shot. But now we know that diet is really important. So if you are on a lower carbohydrate diet, that supports, keeping blood sugar’s low, now you’re making pasta every day.

    Bill 11:52

    Actually, this is the point Bill, when I was first diagnosed as a diabetic, the doctor said to me, you gotta watch your carb intakes, your bread, your pastas, I think he forgot that A I’m Italian. B I’m a pasta maker. And C, my parents are bread makers.

    Bill 12:44

    Oh my gosh.

    Joe 12:45

    For me, it was an impossible task from the start.

    Bill 12:49

    Now, I know what you’re saying. Like you don’t say that lightly. When you say it was an impossible task. You don’t say it lightly. Because I remember when I was told by an awesome naturopath here in Melbourne, I was taught to go gluten free. It was kind of like you’re testing my history, my lineage, my life for every single day of my life until the age of 37.

    Bill 13:18

    You’re questioning my identity, like, What do you mean? Go gluten free? Does that mean I don’t get to a bread? What am I going to eat instead? Yeah. And there was this idea in my mind that if I’m not eating bread, that there’s some weird part of my life missing because when I go to my mom’s house, or any relative’s house.

    Bill 13:41

    There’s a pile of bread on the table all the time, and you’re supposed to slap everything on it, you know, whether it’s whether you’re making a little tomato, beautiful thing, you know, with oregano and olive oil or putting butter on there, or whether you’re putting cheese on there, it doesn’t matter.

    Bill 13:59

    It goes with everything, whether you’re wiping up the source from the pasta, it doesn’t matter. Bread goes with every single thing, right? And it was a really difficult thing for me to comprehend, not only to actually take action on what she said, but to actually comprehend what that meant. What do you mean I’ve got to stop it? What does that actually mean for my life?

    Bill 14:20

    And then I would go to my parents house. And Dad would say why aren’t you eating bread here have some bread. The nutritionist taught me not to, what do you mean the nutritionist taught you not? What the hell does that mean? And that was really difficult. So I imagine for you it was at least 300 or 400 or 100 times harder.

    Joe 14:44

    It was. Being in business, and also the fact that I eat pasta every day. You know, I’ve been making pasta for 26 years, and I am not sick of it. I enjoy eating pasta. Got my favorites, and I’ll stick to those. But we don’t go a day at the table without eating pasta, whether it’s made with a bolognese source, or a ravioli or tortellini.

    Joe 15:17

    So there’s always pasta on my dinner table. But what I’ve learned is to match the portions. So I’m not a big pasta eater. Like you know, when I was single, I lived at home with my mom, the plates would be so cool that that’d be overflying.

    Joe 15:38

    And you’d have to be careful with the floor because the pasta on the outside of the plate, but at home I’ll probably have four or five ravioli and Antoinette usually cooks the protein. So some awesome chicken, even some fish. So I balance it out now.

    Bill 15:59

    Yeah, I know, I remember those. Going home to my mom’s place, and just having a bowl of spaghetti with a beautiful sauce. And then half a loaf of bread to wipe up the sauce. Man, and it was delicious. It was everything that you could ever wish for, you know. And then you associate that deliciousness that love that connection with your mom and your family.

    Bill 16:29

    All that gets associated to this bowl of food. And it’s more than a conversation about we need to stop eating carbs. We need to find a new way to relate to our family and our friends and our loved ones when we’re told to stop eating bread or stopping pasta, it’s a real complex situation.

    Bill 16:53

    So you’re the stereotypical Italian guy. When people from a Greek background like me teased an Italian guy in the schoolyard. You know, when we were growing up, I used to say, go eat a bowl of pasta mate. And then the Italian guys would say to me go eat a souvlaki.

    Bill 17:13

    And we were supposed to be doing that to give people a hard time. But the truth is, eating a souvlaki is amazing. eating a bowl of pasta was amazing. It was hardly a way to give somebody a hard time.

    Complacency led to Progressive stroke

    Joe 17:25

    Yeah, it is. I mean, it’s part of our diet. And I mean, going back to diabetes. Look, it is one of the most manageable disease. And you don’t know how many people get it wrong, myself included. I think it has a lot to do with complacency, you know, day to day life.

    Joe 17:51

    But the great thing about the disease is there are a lot of technological advances these days. So they make measuring sugar a lot easier. So I’ve got a device that is on my arm, that a waveline on phone, and you tell me what my sugar is at any one time. So I can give myself the amount of insulin that I need. \

    Joe 18:18

    And the great thing is it keeps the history. So if my doctor needs to see what my sugars are like, he or she can log into my account and observe the results. So there are advancements, you know, delivery of insulin these days, especially for type one diabetics.

    Joe 18:42

    Diabetes, New South Wales keep devices to automatically deliver insulin into your body. When you need it, you just total the amount and you don’t have to check. So management of diabetes has come a long way.

    Bill 18:59

    Tell me about the device that’s on your hand because I have seen them before. And I know you attach it for a little bit of time. So it’s there for quite a time and then you replace it every so often. Tell me about the whole process to that.

    Joe 19:12

    Well the device isn’t cheap. For starters, it’s a $99 sensor, and it only lasts for two weeks. There is a fine wire that sits under the skin that’s in contact with blood 24 seven, it only keeps results for two weeks, it expires after two weeks.

    Joe 19:36

    So you do need to have another one replaced. The great thing about our country is that we have the NDIS now because I have a disability and I can’t use my right hand to measure my sugar properly. I get this device as I thought was cool, but it comes to me in a second. But it’s an aid to assist people that have disability and the NDIS pays for it.

    Bill 20:10

    Yeah, the National Disability Insurance Scheme. That’s a pretty cool thing. And when you wave your phone over it, it’s connected to an app?

    Joe 20:20

    It is on my phone, I’ve got the app that comes with the sensor. And it gives me a graph of how my sugars are going, little lights will turn red, if my sugars are too high or too low, and yeah, just keeps the history so that the doctors can see how I’m going.

    Bill 20:43

    Seeing that data, real time for you, is that really helpful for you to know okay, swallow the pill, take the insulin is that better than what it was way back whenever you’re being slack?

    Joe 20:57

    It’s funny how things change poststroke. Because you do pay more attention to your health. As I mentioned, there was some complacency there. But after my stroke, I was told that, you know, I could have another stroke, if I continue with the course of action that I’m taking at the moment without looking after my sugar. So I measure my sugar three to four times a day. I take my insulin I take my tablets. So I plan to live for a very long time.

    Bill 21:32

    Good to hear man. And doing that now doesn’t really interfere into your life, because you can measure your sugar anywhere. You can give yourself insulin anywhere you can, there’s no place where you can’t do it, for example, is there?

    Joe 21:48

    Anywhere I want, and that was part of the reasoning behind the National Disability Insurance Scheme, giving the device to me because I can’t measure my sugar, say standing up because of balance problems. I’m not able to use my hand properly, so all these reasons was for this device for me to wear it.

    Bill 22:17

    Yeah, to make it easy. Awesome. Now tell me a little bit about gonna take you into that place a little bit about the day that it happened. And then after that, because I want to get a feeling for what you guys were going through.

    Bill 22:29

    And whether you were cognitively affected, or whether you were completely aware of what was happening to you. How did the day play out? You started to feel unwell then you went to hospital? And then what happened after that?

    Joe 22:48

    I didn’t know I was having a stroke. So all the usual stuff like facial droop. It wasn’t happening. So I walked into hospital. It was only when I sat down that everybody was rushing. The nurses knew what was going on. But I wasn’t aware I started to lose movement in my right arm just felt heavy, not that I’ve lost control of it just started to feel real heavy.

    Joe Cassaniti had a progressive stroke

    Joe 23:24

    I have what you call a progressive stroke. So it didn’t happen all at once. It happened between three and four days. The third day was the worst. So after I was taken into emergency, they didn’t make it a stroke or my stroke was in the brainstem. So it wasn’t able to be picked up on a CT scan.

    Joe 23:55

    So for days, they didn’t know where but they had an idea that it wasn’t on the CT scan and perhaps it might be on the brainstem. So they did a an MRI scan. This was after I became paralyzed. I was totally paralyzed on one side. And they took me down to the MRI machine.

    Joe 24:22

    I suffered from claustrophobia. So that was question number one that they asked me so I kindly asked them for a blindfold. And they put me into the machine for quite a while. And then they found where there stroke occurred in the pons area of the brain. So paralyzed on one side and then complications with look, I think it’s called bradycardia.

    Bill 25:00

    Bradycardia. Low heart rate.

    Joe 25:08

    Yeah. So because I’ve said it quite a few nerves going around my body, my brain wasn’t making contact with my heart. So look, I was quite fortunate because the first time it happened to me, I had a doctor in front of me, I had my wife to one side, I was in bed in a ward.

    Joe 25:30

    And doctor was in front of me. And I started to explain to the doctor that I was feeling a little queasy, I felt like I was gonna pass out. And he said, it’s not a problem, you’re in a bed, nothing’s going to happen to you. Within a matter of seconds, I close my eyes. I thought I’ve reopened them, but I was out for a little while.

    Joe 25:56

    The same had changed for me, my wife wasn’t beside me anymore. And I had a bunch of doctors and nurses around me somebody hit the emergency button, I think it was Dr. Collin, that did. And when I did open my eyes, I think he looked more pale than me because he was a training doctor and a lovely, lovely guy, too.

    Joe 26:20

    I felt so sorry for him. When I did wake up, because I thought I’d just close my eyes and open them up after a while. So they took me down to ICU after that. It did happen several times in in ICU. So they decided to put in a my arm and start delivering adrenalin.

    Joe 26:48

    And Isoprenaline. And as my heart rate came down, the nurses would pop up the adrenaline for me to keep my heart rate up. The great thing about where I was situated in ICU was there was needy desk, where all the doctors and nurses were at. So if I wanted to grab their attention, I could and I did and one occasion.

    Intro 27:24

    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 27:41

    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 recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.

    Intro 28:07

    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.

    Joe 28:26

    starter code Dr. Charles I called him over I said, I feel like I’m gonna pass out again. And he was looking at the machine knows what to a machine there. And he said to me, Joe, your numbers look fine wrist, and within a matter of seconds, I’ve crashed again. So the doctors knew and was actually quite odd thing to have a conscious patient telling me that he was it I was gonna pass out. So as the doctors did gather around, I remember Dr. Charles saying to all the other nurses and doctors, if Joe tells you that he’s gonna pass out believe him because he’ll tell you before the machines.

    Bill 29:13

    Man that is absolutely nuts. So was that traumatic for you? And what was happening every time you were opening your eyes again? How did that make you feel? What were you thinking about? What were you worried about?

    Joe 29:27

    To tell you the truth, I thought I was going to die. A lot of people beside me in beds, I was in an area in the neurological section so I had a priest on one side of the bed giving somebody the last rites. Another guy in the other side of the bed had to have his skull opened.

    Joe 29:58

    So thought I was gonna die. You know, I really thought I was gonna die. But by the grace of God, I’m still me today, and it changed me. I was already a happy go lucky guy before the stroke, but I think my son put it really well, when he said dad after your stroke, you grew a personality.

    Joe 30:30

    I didn’t know whether to take offense to it. But look, I was even more of a clown after the stroke. In fact, look, he was down in hospital, it was really boring. And people knew who I was. So I’ve spoken to people about my business, and the nurses, they said, we want to come to the bypass, I’d be entertaining them and telling them jokes, when I really should have been resting.

    Joe 31:04

    So it was great that I had that and the nurses, the doctors were great. I don’t recommend having a stroke to anybody ever, so definitely look after your health. Because you only get one chance.

    Bill 31:25

    I know what you’re saying about the blessing of having your ability to make a joke and laugh and talk to people in all of that. I know a lot of stroke survivors in the early part of their recovery they don’t have that yet. Because they’re out of it. And I was out of it a couple of times, because I had three bleeds. And then I had surgery. The second bleed was pretty dramatic.

    Bill 31:48

    It’s the one that took away my ability to remember things and who came to visit me and my wife’s name and my ability to drive and work and all that kind of stuff. The first blade was was just just created numbness on my left side. So I was able to talk exactly as I am now even walk and move, it was all fine. The fourth, the third blade basically created more of the numbness.

    Bill 32:15

    And then the surgery created the ability for me not to walk again. And then I had to learn how to walk again and use my arm again. But it was only the second blade that took away my personality and my ability to be me. Yeah. Whereas the other ones didn’t.

    Bill 32:31

    And that contrast later, I think made it easier for my family and friends when they come to visit. Yeah, my you know, he’s still a smarter, so we still had no, all that stuff was still there. And that was good for them. So what what’s your wife going through? Has she given you some information about what the experience was like for her?

    Mental Scars caused by Progressive stroke

    Joe 32:58

    Well, she was fortunate to be able to film some of my time in ICU. So I look at the video clips and the way I spoke because my speech was greatly affected. So I’ve come a long way from sitting in ICU for two weeks, not moving to now where people have to tell me to sit down and shut up.

    Joe 33:32

    So it’s a big difference. She said, I scared a lot of people, myself included. Scars Yeah, there are a lot of scars, but they’re not physical scars. They’re more mental scars. I had problems with my memory. And I need to be able to have a memory of work. And I know I suffer a lot with my short term memory.

    Joe 34:03

    Sometimes I don’t get my words out, right. I had to do speech therapy for saying a few words. And I needed to be able to greet somebody on the phone at work. So it was good morning pips faster. Good afternoon. pips faster and getting the two words with a P was a struggle for me.

    Joe 34:33

    So I did have a rehab center that that is a speech therapy with me. But thank God, you know, I improved so I can speak well. I’m Tia and I do tend to forget words. And I get unstuck day because it becomes frustrating because I don’t remember the word that I want to say definitely is a struggle and the physical struggles, answering your phone and writing down an order.

    Joe 34:33

    The great thing that the NDISD is keeping an ephah. So it frees my my left hand to be able to speak to customers on the phone and take orders down. I’ve gone a little backwards when it when it comes to what I can and can’t do with that is because of my hands, making passwords a physical thing.

    Joe 35:39

    So to be able to wherever all your machines will fettuccine off the machine is a struggle for me. But the great thing about my business is that I have trained staff there. So I spent three months in the hospital. And, you know, the guys that work, my head Pastor Mike and Mike, my administration lady, they just took over the business and treated like their own.

    Joe 36:08

    So I was just concentrating on recovering. And when I went into work, maybe a few days a week, but she spent most of the time with me in hospital. So it’s great that I have those people there that can do those things. And so now I do a lot of nothing upstairs in the office, in an airconditioned office

    Bill 36:30

    Playing solitaire?

    Joe 36:34

    Not quite. But, I had some phase I did some batter entry. So I had to change the way I work. But I know one day, I’ll be paying for it. If my hand doesn’t improve, and I am making improvements. In my hand, I attend rehab twice a week. And I do physio therapy once a week.

    Joe 37:06

    So I’m very active on my rehab. And over the past few months, I’ve been able to do things that I haven’t been able to do in the past simple things like using knife or being able to move my wrists being able to lift my arm.

    Joe 36:34

    And if I restart, and open and close my fingers. And again, it’s all thanks to technology termination. There’s a little device that I was given in hospital and I was one of the first people in in rehab to use an is called cider glove.

    Bill 37:50

    I interviewed the guys that make the glove.

    Joe 37:52

    You did? You have to thank them for me because I believe a lot of my recovery was because of that device. Because the chains attached to my fingers. It helped me to open my hands I was picking up balls and releasing them into a bucket. And that was a part of my therapy day in day out.

    Joe 38:15

    The great thing about it was that when I was released from the rehab hospital, I went straight into the public system. And there’s a I think it’s called stroke outreach, and they also bought the device. So I continued my therapy at Rockland Safra. So it was great to have that continuation, as well as doing task specific types of things like as a segment using the knife.

    Bill 38:51

    Britain man, you talked about earlier talked a little bit about the mental scars. Is there emotional scars?

    Emotional Scars

    Joe 39:02

    Very much so. I find it hard sometimes to use the right emotions. So an example I’m at a funeral I’ll be having a smile on my face because I can’t control that smile. And if I’m having an argument with someone, I’m laughing or smiling and it’s the wrong use of emotion, but it’s something that I cannot control.

    Joe 39:35

    So I annoy people when I argue with them and I’m smiling while I’m arguing with them. So they get mixed signals and that’s frustrating because I managed to piss them off.

    Bill 39:51

    So is that something Joe? You are able to be angry before in an argument and you were able to be so at a funeral like, that’s new to you. This is like a switcheroo of your emotion.

    Joe 40:08

    Sad movies, I cry. And I never used to, before the stroke, I’d be a tough one in the family and, you know, my boys and Antoinette would be crying on any sad movie. So now I’m crying.

    Bill 40:33

    But you laugh at a funeral or you smile at a funeral? What’s that?

    Joe 40:36

    Yeah. It’s because I can switch off that that facial signal, that smile or the emotion so I’m not sure what it is. But it’s a bag of mixed emotions. I cry at work, and I never cry at work.

    Bill 41:01

    What do you cry over? because I cried and still do for me it’s nearly been next year will be nine years, February will be nine years since the first bleed. So what do you cry about?

    Joe 41:14

    I cry that I see people using two hands on the keyboard. And I remember I was mad. I mean, it wasn’t spectacular, but it was 35 words a minute. And I cry that I cry that I see my staff, maning the pasta machine, and I can’t.

    Joe 41:38

    And when serving customers in the shop, to open a plastic bag. And to put product in it for me was a struggle, and I’m getting better. But that made me sad. I suppose the worst was you’re probably not going to like me after this, but I spent three months in hospital. So I wanted to get out. So I decided with my family and I were going to Italy two weeks after getting out of hospital I already spent three months in the hospital against doctor’s orders.

    Joe 42:20

    The reason why I had to travel was to buy a new pasta machine. Although in hindsight, it would be better to keep the old one because the old one is slower. And I could manage it a lot better. So this new finishing machine does 50 kilos per hour. So I went to Italy spent a couple of weeks there. I actually got the best rehab in Italy. So warping streets of Rome.

    Joe 42:46

    There’s cobblestones, and because I have some issues, had some issues with my dorsiflexion having the cobblestones they made me lift my foot, and hyak. So I got better quicker. And I did some steps while I was walking the street subprime. But the reason why I say that is because the machine is now here in Australia, in my past the factory. We’re operating it and it’s a beautiful machine. But I can’t use it. And that makes me sad.

    Bill 43:25

    Yeah, it was a good reason to go overseas, though. When I was in Rome after my own stroke. But it probably took me about five years to get there about a year after my surgery. We did all those cobblestone streets and we walked for 10 hours a day. Yeah. And like you man, it was really good rehab because it built my stamina and my fitness was up back.

    Bill 43:54

    And really gently while I was being distracted by these beautiful things in Rome. And I suppose I had the same opportunity in Melbourne in Australia. But I didn’t do that here. I just stayed at home here for some weird reason. But of course, when you’re in Rome, there’s no you’re silly to be in Rome and go nowhere and do nothing.

    Joe 44:15

    You want to be out and see things.

    Bill 44:17

    Yeah. So and there’s only one way to see it. And that’s by walking. There’s no point driving anywhere. We did exactly the same thing. So I really appreciate what you said about being in a different place. And then using that different place as a reason to have real subtle therapy. And experience a culture difference and all that type of thing. And I’m not saying that you have to travel like you and I do. I don’t know how many thousands of miles is it to get the one.

    Joe 44:52

    We were originally supposed to get a Canberra. That was the discussion. I remember we were sitting as a family in a Chinese restaurant fresh at a hospital. And I’m saying to my wife, I’ve been in hospital too long. Let’s go Canberra. And from that discussion, it went straight to Italy. And I kid you, not my wife and I, within two days of deciding, we’re on a plane with my sons. And to me, that’s how knee jerk reaction, it was for us two days, and we’re on the plane.

    Bill 45:32

    Man, that’s cool. I know that a lot of people can’t do that. But from the point of view of, you know, how can we make this story useful for the people that have had a stroke, just go to another state that takes you an hour to get to or two hours to get to. And use it as an opportunity to learn something new if you can, and find a way to get there.

    Bill 45:55

    Even if you’re in an electric scooter. Even if you know you’re not totally mobile, do something somewhere else where your brain is preoccupied with amazing things. And you’re not paying attention to the rehabilitation, it’s such a great way to do it. And I wouldn’t recommend traveling 16,000 kilometers, or 9950 miles.

    Joe 46:19

    And it’s the best distraction, you know, you cannot sit at home. And I put us, you know, especially at a hospital. And I remember the first few days feeling sorry for myself about you know, what had happened to me, I still wasn’t walking properly, I wasn’t confident in leaving the hospital. In fact, I was one of the very few that would have preferred to stay in the arena, a bit more.

    Joe 46:23

    But I still had the gait belt on and, and wheelchair a onto a plane. But instead of feeling sorry for myself, at home, I was app seeing the world because I was stuck at home sitting watching TV, you know, I was walking and that contributes a lot to me getting better. And I want to make 100% recovery. And now it’s been two years already. And there’s been lots of recovery. But I want to get back to normal. I want to be 100%

    Healthier than ever after a Progressive stroke


    Bill 47:33
    Yeah, why not? Man, that’s a great thing to aim for. I know that some people get frustrated with that term that I’m going to be 100%. But I can’t use my arm or I can’t use my leg. So for me, I can’t feel my left side the same as I used to, it’s never going to change when I get fatigued. It always goes to sleep before my right side, it always means that when it gets fatigued, I bump into the doorway on the left.

    Bill 47:58

    It means all sorts of things. But I am healthier now than I have ever been. I feel like I am 100% even though I have this ongoing feeling on my side and fatigue. Yeah, like maybe at the end of the day after a really long day, or after a really hot day. And maybe I haven’t hydrated properly.

    Bill 48:19

    But I’m 100% and people find that strange because that’s what I say to them I am that doesn’t mean that my leg works perfectly or my arm works perfectly. It just means that I’m 100% healthy, and back to normal. And I do what I can do. And my body has a really good way of reminding me, I’ve done too much.

    Bill 48:43

    It says we can’t do any more your left side is going to go weak now and you need to sit down and you need to rest and that is a tool that I never had before. Do you. You listen to your body now does it give you a lot of signals?

    Joe 48:57

    I do. I see it I feel it. Unfortunately, others don’t. So by seven o’clock, you know i’d be feeling really tired. I feel fatigued and I’d use my balance. So you know people don’t see fatigue. And that’s the one sad thing because um, fatigue plagues me and it plays with my back my balance and you know I hit a run into walls, and I hurt myself I don’t believe I’ve got a lot of scratches on my on my feet on my arm because I feel tired in the afternoon and all I want to do is sleep.

    Joe 49:47

    There is medication for it. And although it does help me, I find that when the medication wears off, I get this feeling of anxiety so don’t particularly like to take it. And I really need to So, and that’s the drug called modafinil. So I’ve used that to keep me alert in when I’ve had to be awake for longer than normal. But these days, I’m indeed by nine o’clock at night.

    Joe 50:23

    And people wonder why is it going so well, and it’s because the fatigue that, you know, obviously, they don’t see. But I feel because I can’t walk properly, I lose my balance, I’ve fallen over a few times, because I’m that tired, that I won’t need my my foot properly. So that is a problem for me.

    Bill 50:48

    Yeah, it does get better fatigue does get better, one of the things that you’ll find is that it’s similar to a muscle, the more you push it and go over the limit, the more it comes up, you become better at it. Yeah, and I’m not saying that you should push it and crash to the point of no return.

    Bill 51:11

    Because sometimes I used to push it and fatigue would take me a day or two to ever come back then you know. Whereas now if I just go and have a good sleep, then I’m fine. And I’m in bed, even nine years after stroke, if I wake up at 6:30 or seven o’clock in the morning, some days, I can be in bed by 9:30 10 o’clock, because I just the body’s shutting the brain shutting down and I just need to rest it. Yeah. And it takes a while but people get used to you being in bed a bit earlier. It takes a while.

    Joe 51:49

    A The other issue I had, I mean living so close to work, I do get tired quite easily. So midday, one o’clock on might come home and call it a day. And I’ll go to bed for an hour. So wake up and feel refreshed and tackle the afternoon.

    Bill 52:12

    It sounds like the business could run completely without you though. You need to be there for other reasons other than just because it’s there’s an order coming through. Right? It just seems like there’s more to it for you than just selling pasta.

    Joe 52:26

    It is I mean, I’m attached to my business. It’s, I began the business in 1993. But I’ve also had a major shift in that I wouldn’t mind retirement. And the only thing that’s stopping me from resign is income. But given the opportunity, oh, consider selling my business. I have a hobby at home that I thought I would never ever take up and that garden. I was hopeless gardener, I did not agree.

    Joe 53:09

    And that would be to my father’s disgust because he grew his veggies in his backyard. Tomato broth, beans. And I don’t grow things. But I’ve taken on succulents. And guess what, it’s good therapy, potting moving plants around watering and taking weeds out. So I’m learning to keep my balance and to use my hands to plant into pots.

    Bill 53:48

    You’ll probably sell the past a business and then turn your hobby into a succulent business.

    Joe 54:01

    Yeah, I definitely would do that.

    Bill 54:07

    It’s written all over your face, man. I could see it.

    Joe 54:10

    What is it? Is it the commercialist in me? I mean, the entrepreneur in me?

    Bill 54:16

    It’s just you don’t do anything by half. So I know exactly the type of guy you are. I’m a similar kind of guy, you know, I’m looking at.

    Joe 54:23

    I can’t be sitting around. My dad, was 83 three before he retired and sold the bakery. So It kept him healthy. And I was having this discussion with a friend of mine yesterday that’s being active and even playing crosswords or reading a book. It keeps the mind active. So I want to keep active.

    Bill 55:03

    The last few weeks and month or so, so we’re recording this in mid December 2020. The last in Victoria in Australia, you know, we’ve had a really tough time and being at home doing nothing because of the Coronavirus for the best part of six months has been really tough on people.

    Bill 55:22

    And it really paints a picture of what life would be like for me, if I had nothing to do all day, every day, if I was at home doing nothing, and had no hobbies, and no passions and all that kind of thing. And somebody passed away about a month and a half ago, and she was my counselor that I’d been seeing for 20 years.

    Bill 55:45

    So we had moved beyond the relationship of counselor, I go there to be fixed by my counselor for my issues, you know, in my head. It was like that person, that wise woman that you go to for lifelong advice that she’s been on the planet for a long time, and she knows things to teach me to pass down to my kids, you know, that was the kind of relationship we had.

    Bill 56:11

    And one of the things I was never able to find out Joe, in the time that I saw her was her age, because it’s rude to ask some women their age, and I asked her once and she shut me down. Unfortunately, when she passed away, I discovered her age. And that was at the funeral, she was 82 years old and still working as a psychologist in her practice, every day, helping people.

    Bill 56:43

    And for me, that was so inspiring to hear that, regardless of her, ill health or the issues that she had, she rocked up to work every single day, and it kept her healthier, and living longer than if she had just stayed at home doing nothing waiting for the illnesses to go away or whatever it was, you know.

    Bill 57:04

    So hearing your dad’s story is similar to me, it’s that perhaps it had moved on for your dad, it had gone beyond being about making money and all that cause it became about a passion and became about meeting people and seeing people and giving them their bread and having conversations.

    Bill 57:23

    And your succulent business is going to become that for you, you know, the thing that you do that’s not really about money, it’s about passion and a process that you’ve got to get through to get to an end point. And the end point is whatever you want it to be, it’s actually the succulent is just the thing that gets the job done to get you feeling a certain way.

    Bill 57:46

    And now being cheeky and saying that you’re going to turn it. But you know what I mean, for me, I don’t see myself as ever retiring from anything. If I’m not doing the physical work, I’m like you I’m gonna find a bolt to sell something to somebody just for the sake of selling it not for any other reason.

    Joe 58:05

    That’s right, I think it’s an hour. But I mean, I’ve been very fortunate that I’ve had staff work with me for so long, that they know how to run a business. And that was one of the first thing I learned in, in business was to be able to put people in position positions where they decide how things go, and then the power to make the decisions. So I can’t pick up and I can walk away.

    Joe 58:41

    But the thing is, I don’t want to because you know, there’s a 400 meter walk to work. That doesn’t mean it will the good there’s a 20 stairs that I’ve got a walk up to go into my office that has made a world of food. So talking to people having lunch with people communicating, living normal life, I don’t think I could stay at home. You know, I live in a I live in in Western Sydney.

    Joe 59:13

    There are a lot of cafes, friends stop by at work. They come and say they’ll take me out for a coffee. And I enjoy that. It’s not like it’s it’s pressuring me I am at that point in my life where I don’t need to grow the business I can keep at this pace. So I’m happy to continue at this pace for a little bit longer.

    Bill 59:41

    Yeah, sounds like a good thing to do, man. Tell me about the pastor. If people wanted to buy your pastor, where would they go?

    Joe 59:49

    Well if you live in them in Sydney, we’re in a beautiful federation suburb called haberfield. And the business is called Peppe’s pasta. And we’re on Ramsey strip in haberfield. We’ve been there a very long time. And we’ve won a few awards as you can see.

    Joe 1:00:13

    So we enter the roll agricultural societies fine food show every year. Last year, we were fortunate enough to get a gold medal and also the most successful exhibitor at the show. So we’re really proud of that. So it’s a quality product. I do have to say, okay, it really hasn’t affected us, there was a problem with supermarkets running out of pasta.

    Joe 1:00:42

    And we do have a couple of supermarkets around us. So a lot of customers filled into our store and began buying fresh pasta, they liked it, and then are continually buying it. So we haven’t and I know a lot of businesses have passed that hasn’t been one of those businesses.

    Bill 1:01:08

    That have struggled her, you guys selling staples, and people want to eat pasta to feel better during a look down because pasta really makes you feel warm in the heart and all that type of thing.

    Joe 1:01:22

    It does and, you know, a lot of people did take up pasta making and bread making at home. Breadmaking is not so difficult to try (inaudible). If you get the consistency wrong, you might as well for the (inaudible). And so people do try and they may give up and say, okay.

    Bill 1:01:48

    And if you’re not a grandmother, you know who’s been making it for 57 years, you probably got no hope of making really. Your shoulder, it’s gonna be a struggle isn’t it?

    Joe 1:02:03

    Took me a very long time.

    Bill 1:02:06

    Yeah. So you guys are on Instagram and Facebook and all that kind of stuff where will people be able to find you?

    Joe 1:02:14

    So if you look at Peppe’s Pasa. And you find us on Facebook. Same for Instagram. You can call us the numbers are on our pages. We, but one of our most popular products is the lasagna. And we can kind of make it happen. And we do a family sized designer that helps people that don’t want to cook so. And it is a very, very nice.

    Bill 1:02:48

    Yeah. And do you sell online?

    Joe 1:02:52

    And we’re currently doing our website. So that should be up in the next week. We’re finalizing some photography this week. And hopefully by Friday, we’ll be done. And but you can get in contact with us through Instagram.

    Bill 1:03:08

    Brilliant, mate Joe. It’s been a real pleasure getting to meet you and getting to know you and learning a little bit about your story. I’m so glad you reached out I really connected with you when you sent me that first Facebook message.

    Bill 1:03:20

    And I thought this is a guy that we definitely have to have on the podcast. And now that lockdown is over and I love coming to Sydney. I am definitely going to come past and have a plate of pasta with you. Even though I’m gluten free.

    Joe 1:03:34

    You are more than welcome and I guarantee you will not be leaving empty handed we have a saying and I’ll say this in my dialect, (speaks Italian) which means with me, you’ll never go hungry.

    Bill 1:03:53

    I look forward to it man thank you so much for being on the podcast.

    Intro 1:04:00

    Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals that pinions and treatments protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:04:27

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

    Intro 1:04:49

    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 anything disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.

    Intro 1:05:11

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

    Intro 1:05:31

    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 Diabetes and Progressive stroke – Joe Cassaniti appeared first on Recovery After Stroke.

    1 hr 6 min
  • How Emotional Intelligence Helps With Stroke Recovery – Usha Raman

    Emotional Intelligence can help you get unstuck, remove emotional baggage, gain more confidence, and live mindfully and happily after a stroke.

    Social:

    https://usha.club/
    https://www.instagram.com/usharaman8/
    https://www.facebook.com/usharaman8

    Highlights:

    01:07 Introduction

    04:19 Mind full vs Mindful
    11:41 Identity
    19:42 What you practice grows stronger
    29:23 Emotional Intelligence
    42:29 Practice mindful awareness every day
    50:59 Gratitude as a default mode
    56:43 Self-compassion technique

    Transcription:

    Bill 0:00

    So I want to ask you about how does emotional intelligence get, how is that part of mindfulness? Because emotional intelligence seems to be like a different thing, but it does come kind of as a package or a parcel, or are they brother and sister, how does it work?

    Usha 0:17

    It is very much, you know, in a package. So with emotional awareness, one of the first things is, you know, self-awareness and self-regulation. So there’s four parts to emotional intelligence, self-awareness, self-regulation, and then people awareness and people regulation and all of that aspects require mindfulness.

    Usha 0:37

    And now with you know, research, we know that when we practice, things like meditation or mindfulness the logical side of the brain and the emotional centers of the brain actually speak to each other more clearly.

    Intro 0:54

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

    Introduction – Emotional Intelligence And Stroke


    Bill 1:07
    Bill from recoveryafterstroke.com This is Episode 125. And my guest today is Usha Raman. Usha trains people in organizations on how to be more mindful, and emotionally intelligent to build an inclusive, mindful and resilient company culture.

    Bill 1:26

    Now before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:37

    I too am a three-time stroke survivor and brain surgery survivor and I have built for you what I was missing when I was sent home from hospital in the hopes that you don’t have to do stroke recovery as tough as I did.

    Bill 1:49

    Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery, that you don’t get the chance to at physical therapy or rehabilitation.

    Bill 2:02

    With tailored support available for less than $8.50 per week, all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. to try out recovery after stroke support and see if it is right for you, you will get the first seven days free as well as a 30-day money-back guarantee no questions asked.

    Bill 2:22

    As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up, it won’t cost you anything for the first seven days. And you will get a full refund. If you’re not happy after 30 days, you have nothing to lose and everything to gain. And now it’s on with the show.

    Bill 2:44

    Usha Raman, welcome to the podcast.

    Usha 2:47

    Thank you for having me, Bill.

    Bill 2:49

    Thank you for having me, and being on my show. This is your second attempt to get this happening because of technical difficulties. It always is the case when we get together with somebody to have a really important conversation, something else gets in the way. And we have to overcome it.

    Bill 3:08

    My coaching clients who are stroke survivors, and the people who listen to this podcast, often have this idea that they need to make a physical recovery, they focus on their physical recovery, which is very important. But they often neglect a couple of other parts of the recovery, which are just as important.

    Bill 3:28

    And one of them is the cognitive side, which they also get some support for. But the one that very often gets missed is the emotional recovery. And without that they’re missing one third of what’s required for recovery. So I reached out to you because I know that you work in the space of emotional intelligence. Tell me a little bit about what you do.

    Usha 3:53

    Sure so I’m a trainer and a coach. And in my training workshops, be with individual clients, public or corporate. I work with mindfulness techniques, as well as emotional intelligence and just sort of teaching people what mindfulness means and how they couldn’t be more emotionally aware, not just about themselves, but also for other people.

    Mind full vs Mindful

    Bill 4:19

    Okay, so I hear the word mindfulness come into your conversation about emotional intelligence. Firstly, I never connected the two but when I hear mindfulness, I hear that my mind is full. And as a stroke survivor, that doesn’t resonate with me. So is my understanding or my definition of mindful, correct? Or is there’s something else going on there?

    Usha 4:45

    Yeah, excellent way to say that because mind full could be spelled with two Ls or one L. So when you’re full of mind, it means we’re ruminating and there’s always thoughts and we can’t really relax or be present whereas mindful spelled with one L is where we are just directing our full attention on what we’re experiencing, in this present moment right now with all our senses, all our thoughts, all our emotions.

    Usha 5:12

    And not allowing the mind to run off into the past, or to run out into the present, which is what, unfortunately, a lot of time the mind does, you know, it runs away to the past, thinking, Oh, you know, this is what happened to me before, or this is what I used to be like, or it goes to into the future, like what needs to happen next, what am I to dos?

    Usha 5:31

    What do I need to, you know, plan for something happens to me, or this has really happened to me, you know, with stroke survivors, what do I need to do, and that can get into overwhelm. But if we just bring our mind back to what is happening now, and then sustaining that awareness of what is just happening, now we’re able to live with a lot less stress. But also, then we begin to understand what we need to do in this moment. So that it will lead to the next moment anyway, and then do that moment really well.

    Bill 6:06

    So if I understand correctly, what you’re saying is, if I’m practicing mindfulness in the moment right now, and I’ll take myself back to the time when I was in hospital, there was a lot of unknowns, there was a lot of concern about my future, my well being my family’s future, all the stuff that normal people go through when they have a health scare, whether they’re stroke survivor, or they’ve had heart attack, or cancer or whatever.

    Bill 6:30

    And from what you’re saying is, what I’m understanding is if I was in that hospital bed, wondering about what I can do right now, to get me to feel better now or to have a really good physical therapy session right now, that’s more supportive and more beneficial to my long term recovery than trying to solve problems in the future that haven’t happened yet.

    Usha 6:55

    Yeah, absolutely. And, you know, I haven’t had stroke myself. But one little thing that happened with me was that I was assaulted once. And because of that, you know, it was quite a bad assault, and I thought I was going to die that day. And so after that, what happened was, I had some sort of post traumatic stress disorder.

    Usha 7:19

    So whenever I used to walk around the house, I would always think that there was somebody outside the door outside the house, and they’re just waiting. And it’s like, you know, visually, I almost saw someone there dressed in a way that the person was dressed.

    Usha 7:31

    And it was, it takes time to understand that. So I had to understand and ask myself, what is happening now? What is now what is happening now? And look again, okay, I am safe now. So what can I do now to help myself? And then you get those answers, as opposed to Oh, no, if this keeps going on, will I ever recover?

    Usha 7:53

    What’s going to happen to my family, they’re gonna think that I’m crazy, because I’m always panicking. And then you go into all these overwhelming thoughts. But if we come back to, okay, this is me, right now, in this moment, I’m not the same girl I was before.

    Usha 8:07

    And a lot of times, especially with patients who’ve been through the sort of traumatic events, they want to go back to their old self, and they’re in such a rush to get there. Right. And because you’re in such a rush, you have this sense of desperate energy and, you may feel really frustrated with yourself, and you end up frustrating the people around you.

    Usha 8:31

    So recovery, and healing is a journey. And we have to first accept that I am not that person that I used to be anymore. I am this new person. Right. And from there comes that mindful awareness of what can I do now? What can you do now? What can I do now?

    Bill 8:48

    I think you’re right, with the acceptance of the fact that you’re different. Now. I think stroke survivors get stuck on the fact that they focus on the negatives of that difference. So they might focus on I’m not walking, or I can’t use one of my arms or whatever the issue is.

    Bill 9:06

    So that focusing on who they are now, they sort of see themselves as the perfect version of themselves in the past. And what they’re perhaps missing is that they might have played a role in the reason why stroke had occurred. Now, it may be in some cases that you didn’t play a role in why stroke has occurred, and that’s perfectly fine we understand that.

    Bill 9:30

    But for the stroke survivors who smoked too much or didn’t eat healthily or took on too much stress, or too much worry or too much concern, created an environment for stroke to occur. You don’t want to go back and be that person because if you go back to be the person you were before the stroke, you’re gonna have another stroke.

    Bill 9:52

    I mean, you’re just going there for the wron reason, right? And one other thing is and when you have the stroke, you are a different version. And that version is a way more evolved version than the person who you were because now you have an opportunity to learn some amazing life lessons.

    Bill 9:58

    And I’m not saying they’re going to be easy. And I’m not saying it’s not gonna be hard. But what I’m saying is, is that you can use the experience of the person that you were up until that point in time, and enhance that person, even though your arm doesn’t work.

    Usha 10:33

    Absolutely. And that’s so key, isn’t it? What you say was really beautiful, because you really face that experience in such a positive way that, you know, you’re saying all this new experience is going to allow me to learn something. But what I find with a lot of people have gone through trauma that you like to ask the question, why me?

    Usha 10:54

    You know, and that is, unfortunately, one of the most detrimental questions that we can ask ourselves, Why me? Why me? Why me? And that causes the rumination to happen. It could have been anyone, why not you? Right? So it’s then turning that question into, instead of why me, you can say it is me.

    Usha 11:15

    This has chosen me and I’m going through this and now seeing what we can do to heal ourselves. But even on a day to day basis, with or without a stroke, for example, we are constantly changing and evolving, anyway, we’re never going to be the same person that we were, even by the time we finish this conversation physiologically, we’re not the same people trillions, we have trillions of cells.

    Identity – Usha Raman


    Usha 11:41
    And you know, every minute we have 10s of thousands of cells that die and regenerate all the time. But we get so locked into what we think is our identity. And this is why mindfulness is so key, because we want to break free from the locks of our identity. Because yeah, maybe you were an avid swimmer before the stroke.

    Usha 12:05

    But now, you can’t be that swimmer anymore. But you still have the identity. But I’m a swimmer, but I’m a swimmer but I’m a swimmer, but guess what? You’re not one anymore. Wow, what does that mean now? What can I be instead? And understanding that if we stop asking why me? Or holding on to those identities, we then open the door of possibilities.

    Bill 12:27

    Yeah, I feel like identity can be very difficult thing, especially if you have a very narrow identity, it shouldn’t be niche. In business, we talk about find your niche, find the group or organization or people who will buy your services, and aim for them and talk to them and speak in their language.

    Bill 12:50

    The thing about identity is if I identify myself as only a swimmer, and all I ever did in my life was swim and I never associated with anybody else outside of swimming, and would never spoke about anything other than swimming, then it would be very easy for my identity to be challenged not only due to a health condition, but also just because my career might come to an end.

    Bill 13:12

    It might just be that I can no longer swim because I’m 45 years old, and I can’t compete at the level of a 30 year old or a 28 year old so I have to become somebody else. And I have to have swimming as part of the the multiple aspects of myself that exist in my identity and not just my one identity.

    Bill 13:39

    And that’s kind of where I am now I feel like I’m a person who not only has had a stroke, and can talk about stroke and interview stroke survivors and people like yourself about mindfulness and emotional intelligence. But I’m also the guy that used to do all those other things.

    Bill 13:57

    And I’ve just brought them into this new version of myself, and I’m using what I learned when I was only a painting contractor. I’m using it in this version of my life because the skills are transferable. So if I was a swimmer, and I learned something about for example, about stroke, I might not be a coach of a golfer.

    Bill 14:29

    But the concept of around a process that I followed to have the perfect stroke or try to always achieve the perfect strokes I can be efficient in the water is the same conversation I can have with a golfer about what the perfect swing is and how to aim for it and try to get it as many times as we can, so that we can hit the ball perfectly as often as possible.

    Bill 14:51

    Now, I might not know how specifically to hit the ball, but they know because they’ve hit it before perfectly and I could transfer those skills from how I learned to swim with the perfect stroke, we can have a conversation about how to try and hit the ball with the perfect swing as often as possible. Can we not?

    Usha 15:11

    Yeah, absolutely. Is that it? Well, you know, our skills are transferable. And a lot of times when we resist what is happening now, we don’t realize that that door is available, we think we have to make this 180 degree and there’s so much uncertainty. You know, even with this covid pandemic, that’s happened, like it brought up so many people’s fears, and uncertainty breeds fear.

    Usha 15:34

    But I had a lovely mentor that once told me, you know, how successful you are, is completely co-related to your degree of dealing with uncertainty. And I have remembered that forever, you know, how happy I am, how successful I am, is directly correlated to my degree of dealing with uncertainty.

    Usha 15:58

    And there’s always going to be uncertainties, you know, and especially I think with a stroke survivor, you’re suddenly very confronted with your mortality, right? And how fragile life really, really is. Same for me, when I went through that assault, it’s like, in an instant, I could have just not have a breath anymore.

    Usha 16:18

    And now, with COVID, especially the whole human race that understands what’s going on, is confronted with this concept of mortality, right. But mindfulness is something that reminds us all the time when you’re mindful, we are very, very in touch with the concept of impermanence.

    Usha 16:39

    Nothing is permanent. But that doesn’t mean that it’s death. It just means it’s transformation. And that’s such a powerful way to look at it. Like, I’m transforming, I’m transforming, and I’m transforming, I’m transforming. And using each moment to reveal itself to you of who you can be in that moment, it’s a very powerful exercise.

    Usha 17:03

    To say the least, of course, it’s difficult to do, especially if we haven’t practiced a lot. But like with anything, you know, it is a learned skill. And, you know, we now know from some research that our mind wanders only 47% of the time, a lot of people think it’s a lot more they think 80% 90% that’s what I usually hear.

    Usha 17:25

    But it’s only about 47% of the time. So if we can just inch forward and take that 47% today to maybe 48% today, and then tomorrow, we can say let’s see how mindful they can be today. So setting intentions to be mindful is very important. I always talk about activating your environment in my workshops.

    Usha 17:46

    So look around your environment, especially after you’ve gone through a traumatic event. What is supporting you? What isn’t? Do you need more plants around the house? Do you have positive phrases everywhere? What sort of books do you want to surround yourself with?

    Usha 18:03

    And really, like I have a very simple quote on my desktop that I see every day. Today, I am mindful. And that’s all I need to go. Every time I turn on my laptop. Ah, yes, today I am mindful. You know, another one on my desk that says what we practice grows stronger.

    Usha 18:21

    And every time I see myself practicing judgment, I’m going ah unconsciously practicing judgment. That’s not what I want to grow stronger. I want to practice mindfulness and I want to make mindfulness grow stronger. So especially after a traumatic event, I think it’s really important to set up your environment in a positive way for your healing.

    Intro 18:39

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now how long will it take to recover? Will I actually recover? What things should I avoid In case I make matters worse?

    Intro 18:57

    Doctors will explain things that obviously, you’ve never had to strike 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.

    Intro 19:16

    Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, 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.

    What you practice grows stronger

    Bill 19:42

    I love what you just said about what you practice grows stronger. Mindfulness is a practice. And the word actually says what you must do. You must practice it to be good at it. And with regards to if you’re practicing being judgemental. Well what it’s actually doing people who are stroke survivors know about neuroplasticity because we talk about it all the time.

    Bill 20:09

    If you’re being judgmental all the time, you’re using neuroplasticity in a negative way to create neural pathways that are about judgment. And the more you use them, the more neural pathways will evolve, and they’ll get stronger. So the best thing to do is to not practice judgment to practice the opposite of judgment, which I imagine is something like acceptance, or love, or gratitude or something like that.

    Bill 20:35

    And then the judgment, neural pathways will go away, and they’ll be harder to reuse and regenerate because they’ll completely be gone by a period of time after you’ve stopped practicing that. And that’s basically how we can use neuroplasticity in a mindful way as well. What do we want to create neural pathways about? We would not want to create new pathways about things that are not serving us.

    Usha 21:04

    Yeah, absolutely. And it’s fascinating that you said that because, you know, especially with the practice part, the word mindfulness was coined, because that it was actually from an ancient language called Pali. And the word was Sati. Right? So usually, there’s a little bit of stuff that gets lost in translation and retranslate.

    Usha 21:26

    So a lot of times now, when people talk about mindfulness, you hear terms like just be just be just be. But for a lot of my clients, they’ve got how do I do that? You know, how do I just be? But when we look at the, I guess, the translation of Sati, it actually means maintaining awareness of reality.

    Usha 21:48

    And what does maintenance mean? Like what do you maintain in your life, right, you maintain your car, your house, your relationships, and maintenance means there is effort and work involved. So although it is very much a being word, and to be present, but there is some doing involved, and that doing is what you’re talking about with acceptance.

    Usha 22:10

    So every time the mind wanders, you have to very intentionally bring it back with acceptance and compassion. So although it’s being worked there is doing and I think that sometimes gets lost a lot. And people think, okay, I’m just going to be, I’m just going to be and then the mind wanders, like, oh, they get frustrated.

    Usha 22:28

    But the work actually happens when that frustration happens, and when you realize that your mind has wandered off. And mindfulness is really just closing that gap between when your mind has wandered off, and you realizing that it has wandered off, right. So it is practicing and practicing and practicing closing that gap, really, and doing that with that attitude of compassion,

    Bill 22:52

    Yeah, compassion for yourself for the situation that you’re in, the person that you’re talking to, I found that I cannot be mindful when I’m angry, I cannot be mindful when I’m upset when I’m yelling, and screaming, all I’m going to be doing is being yelling and screaming and being upset at that time.

    Bill 23:11

    And in order to be mindful, I’ve got to change something. And for me, what I’ve got to usually change is the breath, I’ve got to usually take a big deep breath. And change my state by breathing differently. And therefore, the cortisol in my body can decrease. And as it starts to decrease, then the mindfulness can come back into the picture.

    Bill 23:35

    And I can start actually becoming aware of what I just did. And if I didn’t like what I just did, apologize for doing that to the person I did it to. And then even apologize to myself and say, look, I’m not going to be hard on myself for misbehaving, I’m going to do the right thing, I’m going to apologize first, I’m going to accept that I’m human, and that I make mistakes.

    Bill 23:59

    And that’s not my ideal behavior, and I don’t want to participate in life that way. And then from there, I can bring things back to right now what’s important right now I’m safe. We have a disagreement, it’s okay to be different. It’s okay to have different opinions.

    Bill 24:16

    I’m not taking their opinion personally. I can bring myself to a point where I can start rationalizing things better. That served me and the situation better than what it did. When I thought I was being, for example, maybe personally attacked or something like that.

    Usha 24:33

    Yeah, there is a lot of I guess, emotions that come up right after a trauma and, you know, things like, what did I do to deserve this or you know, what happens next? And it’s really important, especially with emotional intelligence, to ask yourself if the questions I am asking are useful or not useful?

    Usha 24:59

    And then phrasing those questions in a way that’s going to give you the answers you need. Rather than stuff that’s going to get you to play the victim. Right? And it is, you know, we all go through those phases and having that attitude of compassion is key.

    Usha 25:17

    But we don’t want there is a difference between, I guess, having that compassion for ourselves, and then wallowing in misery, right. So we have to really understand that as much as we want to be compassionate about ourselves, we have to love ourselves enough to transform.

    Usha 25:33

    And you know, having that, I guess, it could be little things that you do throughout your day, that helps you be mindful, like I always believe that daily habits are so important, and how you want to build your world around being mindful. So one of the things I start off with is, you know, sometimes brushing my teeth with my non-master Hand because they don’t want to have toothpaste running all over my face.

    Usha 26:01

    So that’s one very quick habit that we can build into our day. Another thing that I do is, every day, no matter how busy I am, I have a five minutes of a mindful cup of tea, you know, when I have that tea, there is no devices, then there’s no one else around me. And I’m only just enjoying the tea, the tastes of the tea, my mouth and how it feels, how I’m breathing.

    Usha 26:23

    And breath is one of the most important things that you brought up, you know, and having the even breath. So one of the things that I’m passionate about is actually yoga. And I am a certified yoga instructor as well. So there’s a lot of breath techniques that we can use.

    Usha 26:39

    One is the equal part breath. So you just breathe in for four counts, you breathe out for four, and then you breathe in five, and then down for five. And you just try and keep increasing that. The other one that I like is the box breathing. So you breathe in for four counts, you hold for four counts, you breathe out for four counts, and then you hold for four counts.

    Usha 27:00

    And you keep repeating this over and over until, you know, maybe you can even build up from four counts to five cards to six counts. So just little techniques throughout the day to just center ourselves so important, and not get caught up in being mindful all the time.

    Usha 27:18

    Because, you know, how mind like I said, wanders 47% of the time, and just accepting that the nature of the mind is to wander is in itself so powerful. You know, it’s like bringing up a beautiful child or you’re taking your pet dog to the park, it’s gonna wander off, it’s gonna get curious, it’s gonna want to pee on every tree if it’s a doggy.

    Usha 27:39

    But that’s just the nature of the animal have, it’s the nature of the child is to wander off in play and be curious. And if we treat our mind, like a loving parent, or like a loving adult in a child’s life, then we can look at that child, which is our mind and go, Oh, come on, darling, come back here. You know, it’s okay, we’ve got this. And speaking to ourselves in that loving, nurturing way is very, very important for our healing process.

    Bill 28:10

    Mindfulness is something that you probably best not to overthink. It’s something that we do, right. And I love what you said about the breathing. Because if whoever’s listening and watching this only gets out of this, to do a breathing exercise, then that will be being mindful.

    Bill 28:30

    If they just stop for five minutes, and breathe, do a balanced breathing exercise, they will have achieved being mindfulness for the day. And what that does to the body is just so tremendous during the day, it actually helps to just alleviate those anxieties, those tensions, those nervousness, it alleviate the cortisol level, it increases the happy hormone, it does all these things.

    Bill 28:59

    And that lasts for a really, really long time in the day, even if you’ve just done it for five minutes, right? So say, you heard nothing else from this podcast and you wanted to take one thing away from it. What I would say is, if you can just do a practice of breathing for five minutes a day, you will have been mindful, and you don’t have to overthink what mindfulness is.

    Emotional Intelligence and stroke

    Bill 29:23

    So with that, I want to talk about how emotional intelligence is involved in mindfulness because I see them being as two very different things. So I want to ask you about how does emotional intelligence part of mindfulness because emotional intelligence seems to be like a different thing, but it does come kind of as a package or a parcel or are they brother and sister, how does it work?

    Usha 29:54

    It is very much, you know, in a package so with emotional awareness one of the first things is, you know, self-awareness and self-regulation. So there’s four parts to emotional intelligence, self-awareness, self-regulation, and then people awareness and people regulation and all of that aspects require mindfulness.

    Usha 30:14

    And now with, you know, research, we know that when we practice, things like meditation or mindfulness the logical side of the brain, and the emotional centers of the brain actually speak to each other more clearly. So we’ve got our amygdala, which is our flight fight or freeze response that we can go through, and that’s the very reptilian part of the brain.

    Usha 30:36

    And later on, as the brain develop, we’ve got our prefrontal cortex, which is all our logical thinking, and our rational thinking. And, you know, although we can see until cows come home, we can say, Oh, no, I’m doing this logically, this is me doing thinking this through.

    Usha 30:55

    But the fact of the matter is, when we receive electric signals into our mind, it actually goes into the emotional centers first, and then goes to our rational part of the brain. Which is why if somebody jumps up to scare you, you don’t go ah that was nothing, and then feel the fright, you feel the fright first and then you have the rational reaction, right?

    Usha 31:18

    So that’s a very simple example. So we’re never truly fully rational We are thinking and feeling creatures, you know, that’s how we were made. So with emotional intelligence, what was found is, that goes to parts of the brain, there is a connection called the and when we practice mindfulness and meditation, that part actually gets strengthened, like physiologically, you know, so there is physiological evidence now that this is going to help us to react less in life to make better decisions, and for the reptilian part of the brain not to hijack that rational thinking as often, you know, so it’s pretty cool.

    Bill 32:01

    I know that what you said is really important for people to actually pick up in here is that there’s a physical change, when you practice emotional awareness, you actually are physically changing your body, you’re physically changing a part of you so that it gets larger, and therefore takes up more space, and therefore decreases the opportunity for that reptilian part of the brain to take hold and control you and be your master.

    Bill 32:29

    It enables that to go quiet, and this other part, to get better and to enhance itself and to be more active in your life. So that’s why it’s like going to the gym, it’s like doing weights, your muscles get bigger, they physically change, they are bigger they are there you can see them.

    Bill 32:45

    And although people can see that emotional center, increasing or expanding, doesn’t mean that it’s not actually changed and increased. And that’s that part of neuroplasticity, again, that we’re talking about that. It’s what we focus on grows, and therefore, that’s going to help us in our recovery.

    Bill 33:07

    Now one of the things we’re sure is that men, I’m going to generalize, and I’m going to be hard on my fellow men, men seem less capable of being emotionally aware, or they are so emotionally aware, but they are so afraid of going there, that they just don’t do it.

    Bill 33:26

    And therefore they miss out on this really important part of recovery, where as a women, in my opinion, seem to be able to get there a little bit easier and quicker. And I think I’ve always been emotionally aware but didn’t know what to do with it. And I found myself connecting with women better than I connected with men about deep and meaningful conversations men wouldn’t want to go there with me.

    Bill 33:51

    How have you found you’ve been able to tease out the emotional awareness or the emotional intelligence of men? Is that something that we can do in a safe way so we can bring more men to that space?

    Usha 34:09

    Well, what you’re doing is the perfect example of that you’re giving men the space to say, oh, gosh, yes, I can talk about my feelings. So Bill, what you’re doing is amazing, right. And, you know, I have seen in workshops as well, like, there was one in particular that comes to mind where this this gentleman was asking, you know, a lot of tough questions.

    Usha 34:30

    And he was like, really hard on me during the training during the workshop. And I just answered based on what I knew what I’ve read, read and learned, and he could see that Yep, he was thinking he was thinking, but I wasn’t really sure what exactly he was thinking, but I was like, you know, I’m just gonna speak my truth here and own it.

    Usha 34:50

    And at the end of that workshop, he stayed behind for another good 45 minutes just talking and talking and talking and talking and he’s like, I’ve never had a chance. To see all this before. Yeah. And I found that since then that yeah, it is unfortunately, especially I guess, you know, people from our generation, I’m guessing you’re around the same age as me.

    Usha 35:14

    You know, guys have been taught not to show their feelings so much. And same with my dad, my dad never said the word. I love you until, you know, I had to leave the country for good. And then he was like, you know, dad loves you, right? And it’s a shame, it’s a shame, but it is what it is. And we have to accept that this is how we’ve been brought out.

    Usha 35:36

    But that does not mean that this is my conditioning. And that’s where the identity comes in, that we spoke about, we’ve identified ourselves as men, and a man doesn’t show feelings a man strong, a man cannot open up. These are what just false identities that we’ve created for ourselves. But we now realize, Oh, that’s not serving me anymore.

    Usha 36:00

    It may have served you up to a point. But the moment you realize that, that’s your realization of saying, Ah, that’s an identity. And I can loosen its grip. So what can I do next to loosen the grip, and that’s a lot of self regulation that we talked about emotional intelligence.

    Bill 36:16

    Yeah, I was gonna ask you about your heritage, because we’re from a great background, I’m 47 years old, and my parents were children of people who went through who have experienced two wars. And, man, I didn’t even understand the concept or how that even is possible.

    Bill 36:34

    But they became people that basically got on with the job didn’t talk about much. The fact that they were alive was enough. The fact that they had a piece of bread to eat was enough, there wasn’t a lot of other complications in their life, other than really surviving, and learning from their parents how to survive in a country, like Greece that was ravaged by war, and then poverty, and all the things that come after that.

    Bill 36:59

    And for many, many decades, and then they left their homeland, and they came to Australia with nothing. And it’s a cliche, but they actually came with nothing to start again, and learn how to survive. So they did what they were taught well, by their parents, it’s like their parents knew that these kids would have to leave and survive on their own again, in another foreign place.

    Bill 37:24

    And then they started their life in the same way it’s served them, they’re in their 70s. Now, and I’m wondering, as a 47 year old, somebody who lives in Australia, their way of life is not one I can comprehend. And unless we have, unfortunately, some crazy bloody war here, which we’re very fortunate not to have.

    Bill 37:45

    I don’t need those skills, I don’t need their skills, I need different skills. And if I need to access the skills that they had, then things are going to be very different in Australia than they are now. So where did your family come from?

    Usha 38:03

    So I was born in Singapore, both my parents were born in Singapore, but they’re an Indian of an intensive ancestry. So like my grandmother, you know, she lived through the war, my mom lived in a British camp, which is where she met my dad. So you know, they saw all the I guess the effects of war from then and same with you, you know, for them was all about just surviving, and getting through the next day and getting enough bread to eat.

    Usha 38:31

    And it was almost as if there was, like, a fear. Definitely, there was a lot of fear base like on what if we in case, we don’t have enough there was that mentality and also, I guess, of having this glass ceiling that this is as far as we go and that’s it right? So yeah, it’s definitely taken a while to understand that that glass ceiling was only in their minds.

    Usha 39:03

    And it actually doesn’t have to apply to me anymore. So yeah, we’ve, I think one of the best things with emotional intelligence is we are able to step away from our experiences and looking at things from a very observer point of view. In fact, we use the word observer mode in mindfulness a lot as well.

    Usha 39:24

    And we go into that observer mode, and ask ourselves, okay, these are just my thoughts. And I am don’t have to identify with these thoughts. You know, we can think my parents went through that, therefore, I’m like this, or I feel this way because my mom didn’t care enough.

    Usha 39:42

    Or, you know, and this is because I wasn’t taught the right thing. I wasn’t taught how to eat healthy, which is why I’ve had the stroke and then stay in but now taking the observer point and go, Oh, that was my childhood. And that was the conditioning. But what can I do now? Always had coming back to the now is so important, right?

    Bill 40:05

    It’s like a responsibility. It’s like, what can I be responsible for now, I know that that happened then. And that’s how they taught me. And I’m not responsible for that. They are responsible for that. And I forgive them because they did the best that I could do with the resources that they had available to them at the time.

    Bill 40:21

    So let’s give them a break for perhaps not making every perfect decision for me. But now that I know that, and I can continue on with my life, or what are the perfect decisions that I need to make for myself? And when they actually shown to be the wrong decision.

    Bill 40:39

    How can I just get over there? How can I just say, well, okay, I thought it was the right decision, I did that it didn’t work out. And here I am, now I’m going to change my trajectory, and I’m going to try something new. And that glass ceiling that you talked about, that’s such a true thing, because the glass ceiling often is set by our parents, isn’t it?

    Bill 40:57

    It’s set by the generations that have passed. And some parents will say, you can be anything you want to be. But they didn’t do that, by example. They stayed like a factory worker, or they were always an engineer, and they never really followed their passion of being a florist or whatever, you know.

    Bill 41:21

    And they created a glass ceiling for themselves, but they encouraged us to potentially not have one. But even then, they didn’t actually lead by example, they just wanted us to, they wanted to live through us rather than be themselves because they made sacrifices for us.

    Bill 41:39

    So that we can make sure that we have a roof over our head, more bread to eat. And they had, that we were living in a country that’s safer than they lived in, or grew up in, and that hopefully we don’t experience what they experienced. So it’s a really interesting conversation about understanding that perhaps some of what we’re experiencing our life has been given to us as part of the legacy of our generations before us that was from 100 years ago, or 150 years ago.

    Bill 42:12

    And it was relevant then. But maybe it’s not relevant now. And being mindful about that, and aware of how you’re behaving and bringing yourself back to the now you can go. Well, yeah, that’s not working for me like it worked for my Dad, why should I be doing that?

    Practice mindful awareness every day


    Usha 42:29
    Yeah, it takes a lot of mindful awareness. And, you know, my teacher, he says, you don’t even need a lot of time to change that. Sometimes you from having that thinking, to come back to mindfulness, you just need nine seconds. This is just every day, as often as you can, whenever you remember.

    Usha 42:49

    Just breathe in and out with intention for nine seconds. And that’s all you have to do to start, you know, and then later, taking that nine seconds into a minute and a half, because if five minutes of your mind not wandering, it’s actually a lot, you know, to even sit down for five minutes and go, you know, my mind is not gonna wander.

    Usha 43:11

    Which is why monks, you know, even after 40 years in a monastery, they’re still practicing mindfulness, they’re still practicing meditation. It is a lifelong practice, but just start with nine seconds a day, about that’s about three deep breaths, you know, and sometimes you’ll find after the second and a half breath, the mind will go, ooh, that was mindful.

    Usha 43:11

    That’s the thinking. And it’s like always trying to, it’s a little game. If we look at mindfulness and emotional intelligence as a game and not like, like a chore that we have to work through another thing in life. Instead of looking at it that way, just go Okay, this is a game, it can actually be a very fun game.

    Usha 43:50

    Mind you want it come on, darling, come on back. Right, three deep breaths. 1 2 I’m mindful. That’s the mind coming in again. Let’s try again later, in five minutes, take three deep breaths, you know, and constantly pushing through the pain and making a game out of it. That’s really, really important.

    Bill 44:12

    Yeah. I found that when I approach some people to do a meditation, they’ll go I don’t know how to meditate. I can’t meditate. My mind always wanders. Well. That’s exactly right. It’s not meant to not wander. It’s just meant to go wherever it goes. So that you can observe it in its environment and just see how it goes and does things.

    Bill 44:36

    And that will give you a lot of insights into what kind of a person you are and how you react to things and respond to things. And that’s kind of like a visual because when you’re meditating you do see a lot of things happening with your eyes closed, which is strange but true.

    Bill 44:53

    And that when I find myself doing that and seeing all the visualizations and experiencing my mind wandering. That’s a really big insight into what’s happening when I’m not aware of it. So when I’m not meditating, that’s happening to me all the time anyway, that’s how I experience my world.

    Bill 45:14

    But when I am meditating, it’s like, I’ve just gone meta. And now I’ve just enabled myself to see how my mind kicks over and how it works. It’s just for me fascinating that the mind A does that and B that I can be aware that the mind does that. And then that allows me to decode my own mind and go, Ah, okay.

    Bill 45:34

    All right, I thought of that, not useful. Let me think of this. Instead, I thought of that not useful. Let me think of this instead. And that’s kind of how I structured my mind so that I can be positive more often and not positive way. I just say positive words. That it’s actually me embodying positivity and being positive and doing positive, not just thinking positive, you know, from one perspective, it’s from my entire being my entire body.

    Bill 46:07

    And that positivity can be in the face of very difficult times and moments. And when I had the stroke, it’s like, okay, what’s one good thing that’s come of this? What’s something good, that’s happened during all this terrible time. And it could have just been that my mom came in the room at the right time.

    Bill 46:26

    And I haven’t seen her for five days. And now she’s here, you know, so that was enough. And that what’s good about this is also something that I’ve used at the worst times, you know, in funerals, when we got a funeral, and we’re thinking, how can there possibly be anything good that has come out of that?

    Bill 46:45

    And that good thing might be, I was blessed to be in that person’s life. You know, that’s how I trained my mind going in and meditating and being mindful of how it plays games, those games that you talked about. Now I can go, Okay, let’s play the game. My way, the way I prefer.

    Usha 47:08

    Yeah, that’s so powerful, really, really powerful. And in a few things that you said that really resonated, you know, when you said the word meta, that really is going beyond thought. And when we begin to understand that I am beyond thought I am beyond you know, we are beyond the sum of all our thoughts even, right, that’s really going meta.

    Usha 47:31

    And one of the very simple techniques we can use to do that is using language. So if you’re, for example, if you get a recurring thought, you know, if you’re a stroke survivor, and the recurring thought is I will never recover, I will never recover, I’ll never recover, right?

    Usha 47:47

    You take yourself into the observer mode. And you say to yourself, I am having the thought that first you can think of that sentence First, I will never recover, recover. I mean, just believe it as much as you can for 10 seconds. Okay, because stepping into that thought allows you to feel into the emotions, which we a lot of times don’t want to face.

    Usha 48:10

    So it’s facing that as well. Okay, so number one, is saying, you know, I’ll never recover once you believe it for 10 seconds. And then we say, I am having the thought that I will never recover, and be using language to distance yourself. So I’m having the thought that I will never recover, I’m having the thought, I’ll never recover, then take that in and believe it for 10 seconds.

    Usha 48:35

    And then we say I notice that I’m having the thought that I will never recover. I noticed that I’m having the thought that I will never recover. And we keep distancing ourselves and pushing ourselves away from our thought and then we can begin to really see and go, Oh, well, that’s just a thought.

    Usha 48:55

    It’s transitory guess what? I have a new thought now. So language can be very powerful. You know, and like you said, using that positive language and asking yourself, what do I want to choose instead? So choosing language that is empowering is definitely an emotional intelligence technique.

    Bill 49:16

    I love what you said there about distancing yourself and the different steps back. Because if, if you’re a stroke survivor, listening to this, are watching this, and you’ve said, You’ll never recover. Now, imagine you’re in a situation where you are listening to another stroke survivor, say that about themselves.

    Bill 49:37

    And you’re watching them and they don’t know that you’re watching them. Talk about themselves in that negative way. Would you let them say that or would you be bursting out of your socks to go to them and say, Hey, don’t say that about yourself. You might recover. You don’t know that.

    Bill 49:53

    Be more positive, you know, you wouldn’t do that. So if you’re watching your self, re Act. So now if you’re watching yourself, react that way to support another person who thinks they won’t recover, then don’t speak to yourself like that, then be the person who supports you in the same way you would support your friend or another stroke survivor that came to you for advice.

    Bill 50:21

    That’s kind of what I’m getting from that that’s distancing yourself and then going, Wow, do I also behave like that to myself? Because if I do, then I’m getting in my way, just like that person is getting in their own way.

    Usha 50:37

    Yes, absolutely. And what you said about gratitude and I know, it’s set to death, the attitude of gratitude, the attitude of gratitude. But it’s not as simple as we think it is, there is so much research behind the practice of gratitude as well. And why it’s training your mind now to look for the positive so that that becomes our default mode.

    Gratitude as a default mode – Usha Raman


    Usha 50:59
    So there’s some research done about the default mode network. And the more we actually train our default mode to be more positive, then we can do that a little bit more easier. Definitely. That’s, you know, long story short. And coming back to gratitude is not just gratitude for yourself in your day, there was one very, in our research, I always like to quote is, this gentleman he made people write thank you notes to somebody else.

    Usha 51:29

    And give somebody who they thought was, should be thanked maybe was thanked, but not to the extent that you really feel write them a letter of gratitude, post it to them or give it to them personally. And that high that you get from having that letter can last up to a month.

    Usha 51:48

    Yeah, hopefully measured people’s brains, and he realized that gratitude has that much of a lasting effect. So yeah, practicing gratitude is one of the best best ways to, you know, till today, I always say my gratitude, whenever I can, we have a little group, on Whatsapp group, and we actually send each other gratitude. So start something like that, within, you know, your own group of friends even.

    Bill 52:16

    I do my little gratitude practice at night before I go to bed, put my head on the pillow, no one knows I’m doing it, you can’t hear it, there’s no proof. Just in case, you know, I was concerned that people would catch me out being grateful. And it just basically starts off with you know, I’m thankful for the people in my life, the people I met the conversations that I had, the experiences that I had.

    Bill 52:42

    And even in the terrible experiences, like what was good about having that conversation with that person, or that experience or whatever, just so that, even if it was just a lesson for me, even if all i got from that was a lesson of how not to behave, or how not to accept people in the way that they treat me, or how not to engage in, in certain situations, whatever it was, I just am grateful for that. And that makes me go to sleep with a grateful mind.

    Bill 53:12

    And then wake up in a different zone, then, sometimes I used to go to bed in anger. And with, you know, madness and with craziness and wake up in the morning feeling like I haven’t slept and like I’m exhausted, you know. So it really helps with that. And that helps heal the brain that helps heal and recover the brain.

    Bill 53:33

    And it helps to reduce cortisol and it gives your body an opportunity to relax and to be comfortable and to ease. And, it’s extremely useful and doesn’t cost anything, and you don’t need to be anywhere specific to do it. You can just do it when you’re on the bus going somewhere or on the train.

    Bill 53:58

    And it’s so easy. And it helps to support emotional intelligence, it helps to get you to that point where you’re connecting parts of your body that perhaps were disconnected for many years, because you’re just a big head on shoulders, you know, and all you ever did was use your head to get through life.

    Bill 54:17

    And now you’re starting to connect. Because gratitude comes from the heart, it doesn’t come from the head. And you’re starting to connect all these systems again, so that they start working and talking to each other. So that you’re not just a big head on shoulders.

    Usha 54:33

    Yeah, we always have to remember, you know, like coming back to how we are emotional beings as well as thinking beings, you know, one doesn’t really exist without the other and, and if we can embrace that and, and body with more mindfulness and not being too stuck in the thinking, and, you know, just ruminating about things really Yeah, there’s so much we can do for ourselves.

    Usha 55:03

    And especially I think we, you know, people have gone through something as major as a stroke, to not want to rush. That’s the main thing. Like I said, you know, we have this future projection of ourselves. And we think we want to get back in a hurry. And this doesn’t even have to be people with stroke, we see it in everyone all the time. We’re always in that doing mode.

    Usha 55:26

    Yeah, it’s good to have goals, set your goals, and that’s fine. But then later on, enjoy the process of getting there with the knowledge that everything is impermanent anyway. You know, and not letting that impermanence impede your journey, but allowing it to influence your journey more positively.

    Bill 55:46

    Yeah, I love it. And if you’re somebody who’s listening to this podcast, and you’re new into these types of conversations, but they resonated with you have these types of conversations more often, with more people, find out where those people are, connect with them, connect with Usha, connect with myself and have these conversations more often.

    Bill 56:07

    So that you can start getting used to the language and used to the feelings and used to the way that you need to be to experience mindfulness and an emotional intelligence. And that way, you’ll start to grow this other part of you that can coexist with who you already are.

    Bill 56:29

    Because not once did Usha. And I say that you need to stop being who you are. We’re just saying you need to bring in this little other beautiful piece, and enhance who you already are, which is awesome already.

    Self-compassion technique – Usha Raman


    Usha 56:43
    Absolutely, and we spoke about self-compassion quite a bit. And, you know, for a lot of people, that’s could be a strange thing that could be like, Oh, how do I even start, so if you are listening, and you feel that, oh, gosh, I don’t even know where to start with self-compassion. I’ll just share one very simple technique, which I call the labeling technique.

    Usha 57:04

    It’s a meditation technique that I have on my things one of the meditations have on my YouTube, I believe, as well, which I just started to put stuff up. So look for the labeling technique, but I’ll just very quickly describe it is just focusing on your breath. So when you breathe in, you say rising and allow your belly to rise and expand.

    Usha 57:25

    And when you breathe out, you say falling and allow your belly to contract. Okay? Because you’re pushing the lungs out. So you really breathe in your belly all the way you can. And then you breathe in, you go rising, when you breathe out, you go falling, but the mind will wander.

    Usha 57:39

    When the mind wanders, Just say the word drifting. Okay, and we’re not saying that it’s a bad thing, or a good thing. And we just say drifting, drifting, drifting, and then coming back to rising, falling. If darling come back is too difficult for you to say, then just see drifting, drifting, and make sure the tone of the drifting is kind. It shouldn’t be ah drifiting. It should just be rising, falling, rising, falling, drifting, drifting, rising, falling, rising, falling. So that’s a very quick tip.

    Bill 58:16

    On that note, I’m grateful for you and grateful for you accepting to be on the podcast, I really appreciate the fact that you came on not knowing me much, and sharing what you know about mindfulness and emotional intelligence. And that you did that and that’s going to make a difference to the people listening and it’s going to hopefully create curiosity in them to go further with this idea and see how they can benefit from it.

    Usha 58:47

    Thank you so much, Bill. It was such a pleasure to meet you. And I’m glad I said yes. And what a wonderful job you’re doing so all the best to you.

    Intro 59:01

    Discover how to heal your brain after stroke, go to recoveryafterstroke.com.

    Intro 59:11

    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 all content on this website at any length blog, podcast or video material control.

    Intro 59:33

    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 59:51

    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 1:00:06

    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 called triple zero in Australia or your local emergency number immediately for emergency assistance.

    Intro 1:00:27

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    The post How Emotional Intelligence Helps With Stroke Recovery – Usha Raman appeared first on Recovery After Stroke.

    1 hr 1 min
  • Vertebral Artery Dissection And Stroke Aftermath – Stephanie Flynn

    Vertebral Artery Dissection And Stroke – Stephanie Flynn remembers the exact moment when a sudden movement caused a vertebral artery dissection that created a clot that caused a stroke.

    Social:
    www.instagram.com/stephdflynn/

    01:09 Introduction
    10:03 Vertebral Artery Dissection And Stroke
    16:03 Post-stroke mental fatigue
    27:53 Cognitive and emotional recovery
    34:24 Positivity and stroke recovery priorities
    43:36 Depression and anxiety
    46:35 Focus on finding solutions
    54:24 Acceptance
    1:17:30 Knowing when to reach out

    Transcription:

    Stephanie 0:01
    I was not thinking it, but it’s almost as if it really took out all the things that, you know, I really needed that were just kind of noise. And now I can focus on here’s my purpose, here is the reality of it, here’s what’s important, here’s where you need to generate your energy and just be a lot more simple and positive.

    Stephanie 0:25
    It was still difficult though, because, and even still now, I’m really saying I was even speaking with my friends about this recently, because I would say, I have a grasp of the emotions, but it’s still very hard to feel it. And every day that goes by, I feel like it should be a lot further along. But I’m realizing this process takes time, and there is no time limit.

    Intro 0:56
    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 1:09
    Bill from recoveryafterstroke.com. This is Episode 127. And my guest today is Stephanie Flynn. Stephanie remembers exactly when a sudden movement caused a vertebral artery dissection that led to a massive headache and then ischemic stroke.

    Bill 1:27
    10 months later, Stephanie is coming to terms with how life is different. Now just before we get started, if you have ever wondered what I can do to help you with your stroke recovery, you should know that you can get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:43
    I too am a three times stroke survivor and a brain surgery survivor. And I have built for you what I was missing when I was sent home from hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 1:57
    Support packages give you access to a variety of tools 24 hours a day, seven days a week so that you can work on other areas that are important in stroke recovery, that you don’t get the chance to add physical therapy or rehabilitation.

    Bill 2:12
    With tailored support available for less than $8.50 per week all recovery after stroke support packages, bring stroke recovery to you in the comfort of your own home. To try out recovery after stroke support and see if it is right for you, you will get the first seven days free, as well as a 30-day money-back guarantee no questions asked.

    Bill 2:34
    As a bonus, you will also get to face to face zoom support calls with myself to take your recovery to the next level. Go to recoveryafterstroke.com/momentum to sign up. It won’t cost you anything for the first seven days and you will get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything to gain. And now it’s on with the show. Stephanie Flynn, welcome to the podcast.

    Stephanie 3:01
    Thank you. Thank you so much for having me.

    Bill 3:03
    Thank you so much for being here. I really appreciate it. I like to get in touch with people to come on the podcast to share their story about stroke, and about how it’s impacted their life. Tell me a little bit about what happened to you?

    Stephanie 3:21
    A little bit of backstory, I’ve never really had any major medical issues before. But earlier this year, about the first week of the year. Let me give you a little bit more backstory. The end of last year, I had started having a really big headache and majorly just attributed to holiday stress.

    Stephanie 3:48
    There was a lot of things going on my family, we were traveling for a funeral and a wedding and you know, I just kind of brush it off. And then once my family we came home still had a headache. But again, I just thought it was something that was just a residual effect from the holidays and whatnot.

    Stephanie 4:09
    And then it was January 8th. In the morning, I still have that headache, but again, it was nothing different. And then at about eight o’clock, all of a sudden, my whole right side of my body just started going numb and it was extremely intense very quick.

    Stephanie 4:30
    I have two daughters and one daughter was about 10 months old. She was with me at the time and my husband had just went to drop my oldest daughter off at school. Luckily he was on his way back home. I went to go and pick up my phone to call him and realize couldn’t even grip my phone.

    Stephanie 4:50
    So I went and use my other hand to call him and just said hey, something feels weird. He got home in two minutes. And from the onset of the symptoms, it was probably maybe six minutes before we got in the car he said, we’re going to the emergency room.

    Stephanie 5:13
    And luckily, it was only about a less than 10 minute drive down the road. But in that time, my right side was still numb, but I had completely lost my speech and pulled up to the hospital went to go in, I couldn’t even walk in, he had to go inside and get someone to come out with a wheelchair.

    Stephanie 5:37
    And this is about 15 minutes in and of course, you know, they do the whole triage and all that stuff, and I couldn’t even speak, couldn’t move. I was trying to act like everything was okay. Because I am the type of person where, you know, mind over matter, just be strong.

    Stephanie 5:58
    But this just was unlike anything I have ever experienced before. And I of course had my 10 month old with us too. So I could tell she was distressed. So that was kind of making me a little bit more nervous. But they got me back in, they did a CAT scan, initially it looked okay, and then they did a second one.

    Stephanie 6:23
    And then they found a blood clot. On my left side. And it all happened very quickly. This was maybe again, like a half hour after the symptoms had started. And they then told my husband about this medication called TPA. And they said, you know, there’s a risk, there’s a, you know, I think 3% risk that this might not, give us the result that we wanted, but you know, sign these papers, and we’ll start to administer it.

    Stephanie 6:59
    So my husband signed the papers. And I think 10 minutes later, they’re realizing nothing was really happening. So they wheeled me back on into surgery and started to perform a they started to do a thrombectomy to go inside, do the wiring just to clear the clot on their own.

    Stephanie 7:26
    And by the time that the neurologist went to go and finish, the TPA had cleared the blood clot. So he didn’t have to finish with what he was doing. The clot was cleared, and then you know, they wheeled me back into a room. And again, this was maybe an hour and a half, two hours after the very first onset of the symptom.

    Stephanie 7:55
    And I think I was still in the shock factor, not really knowing what was going on. In asking the most incredible nurses, I live in Arizona, and so the hospital I had gone to was a tier one stroke hospital, ironically. So they knew everything that they were doing, they did a phenomenal job.

    Stephanie 8:21
    Every question I was asking, they already knew you know how to answer it next. Even though my processing at that point had already started to slow down, I started to realize not only that I was scared of the physical effects that I could start to be aware of the mental effects.

    Stephanie 8:40
    But then finish the surgery and came back into the room and really just tried to analyze from there, you know, what happened? How did this, you know begin. And I honestly had started feeling much better.

    Stephanie 8:58
    I had an enormous headache. But you know, it wasn’t anything that I felt, you know, was extremely different until I tried to move and I tried to move to my right side and they said, don’t try it yet. You are going to need to stay here, you very clearly are not someone that is gonna stay in one position and being calm.

    Stephanie 9:23
    But we’re going to need to stay here for a little bit. And I realized the severity of it when right before they went to wheel me off. They looked at my husband and said you guys should say goodbye. We’re not really sure how this is going to turn out.

    Stephanie 9:40
    And I think we both were just very much shocked like this is all happening so quickly. I’m grateful that they were so efficient and quick but this was a lot to process very quickly. So after they performed the surgery, then we just tried to figure out what we’re supposed to do next and how this all happened.

    Vertebral Artery Dissection And Stroke

    Stephanie 10:03
    And we narrowed it down to it was about 10 days before I had turned my neck at my grandmother’s funeral. And I will never forget, I had felt the most stress I’ve ever felt before. Everybody were stressed differently. I very much carry it, you know, my shoulders, and you know, I could just feel it.

    Stephanie 10:29
    And I, when I turned my neck, it was just a nothing intense. It felt like, you know, I could not even explain it. It was a pain that was so intense. I tried to ignore it, because it was really in the middle of our my grandmother’s funeral. But you know, I would pinpoint my headaches would always be I’d say, hey, they’re right here.

    Stephanie 10:58
    You know, I could feel it right here. But for some reason, it’s right here. And everybody just said, you know, it’s just a migraine, whatnot. So they pinpoint it back to when I turn my head. Apparently, that’s when I had the dissection of the artery. And the clot had started forming, you know, at that point, and then fast forward 10 days later, and that is when a stroke happened.

    Bill 11:27
    Far out, vertebral artery dissection caused the stroke that caused a clot that went up into the brain that caused the stroke, perfectly healthy woman otherwise. And then all of a sudden, you’re dealing with all of the impact of stroke, in a space of minutes, you’ve gone from Normal to half of your body being gone.

    Bill 11:48
    And then try to understand what it all means and trying to make decisions. It’s a very common experience, the one that you’ve just described, it’s, you know, similar to what I went through, but a lot of stroke survivors have had vertebral artery dissection have gone through similar things.

    Bill 12:06
    And it started from something minor as well. And one of the episodes, I interviewed a police woman who, you know, minor collision, moved her head in a particular direction. And that caused the vertebral area dissection. And then a few months later, I think it was it caused a stroke.

    Bill 12:25
    And she was in her 30s. And it just seems to come from nowhere. And from nothing, and very few people even know, to do anything about the headache that they have, for a long period of time. She kind of felt it in her neck like you she sort of knew where it was. And she would sort of say like, it’s kind of in that spot.

    Bill 12:48
    But in the end, it’s just amazing to be talking to you. And all those other people that I’ve spoken to, you know, 123 episodes so far all those other people that I’ve spoken do have been in that situation. And here we are, we’re talking about it we’re here, we’re able to share. Tell me about what it left you with. So I know you were in hospital and then you were dealing with the immediate issues a TPA, by the way, which is an amazing drug.

    Stephanie 13:18
    Oh, my goodness,

    Bill 13:23
    I had it here. Where is it? It’s called. The oh my gosh, where was it? I just had it open here.

    Stephanie 13:35
    I should know too.

    Bill 13:39
    Tissue Plasminogen Activator. So administered within the first three hours of stroke does for you guys. Like the most amazing thing and saves function saves lives saves all sorts of things, but it does have the risk of causing hemorrhages. In some patients, it can cause a brain hemorrhage.

    Bill 14:06
    So the opposite of what we’re trying to achieve. And then therefore, complications but I’ve spoken to so many people have been administered TPA, and they get away they seem to get away with it with like they get away with I can’t even describe it It’s so phenomenal what me and other stroke survivors go through years and years and years of stroke.

    Bill 14:31
    And then people who have been administer TPA and get a good result within three hours. They kind of dodged a bullet like a major bullet and they don’t realize the seriousness and the dramatic nature of what’s just occurred. So when you had time to come around after all the surgeries What were you left with that you had to recover from?

    Stephanie 14:53
    So I they had done about a couple days worth have, you know, like you said, bloodwork surgery, you know, MRIs, all that stuff. I was begging to go home, because I felt fine. Not realizing, again, I was laying down, I wasn’t aware of my even though I had got my feeling back, on my side, I had lost about, I would say about 75% of my mobility on that side.

    Stephanie 15:35
    And then I once leaving the hospital, my main focus was trying to get myself back physically, you know, I was able to walk extremely slowly, I was not, you know, able to lift any weights or anything like that couldn’t hold my daughter. But I was okay with that. I said, Okay, that’s fine, you know, it’s a traumatic event, I can handle that, you know, I’m going to start to do some physical therapy.

    Post-stroke mental fatigue for Stephanie Flynn

    Stephanie 16:03
    And, you know, trying to get that back. I was very focused on the physical side because it was obvious to me that I completely neglected the cognitive and emotional side, I left the ICU, truly believing that things would just go back to normal, I would just need a little bit of physical therapy.

    Stephanie 16:27
    Because I could think Normally, you know, my, they had given me medication to make sure that this wasn’t going to happen again. And so let’s just focus on the physical side. And I realize, probably within a week, that my cognitive side, my memory, my ability to comprehend my ability to be calm, and be patient, and to not get overwhelmed and overstimulated and I was most surprised with the unbelievable fatigue.

    Stephanie 17:09
    It wasn’t honestly physical fatigue, it was truly mental. Just I could feel my brain trying to get back to normal, and it was exhausting. And they would say, you know, don’t be on your phone, don’t do anything. And I would just lay there and I could sleep all day.

    Stephanie 17:30
    And it was very defeating because I felt like, Okay, I’m exhausted. But let’s focus on this physical side, you know, so any energy that I would get, I would try to get my physical side back, not realizing, even just taking a walk around the block, I came home and had to take a nap.

    Stephanie 17:49
    And I have never been like that before. So I feel like I was left with the obvious physical side that I kept saying, you know, they had told me, hey, you may never get back to 100%. But I’m the type of person where if you tell me, I can’t do something that I’m going to try really hard to make sure that I can.

    Stephanie 18:10
    So it was extremely motivating. But in doing that, the mental exhaustion, and then so I was very aware of the physical side than the cognitive side and the fatigue. And then I started to realize emotionally, I had lost a lot of empathy. I had lost my ability to, you know, be calm and reason and make sense of things.

    Stephanie 18:41
    Things became, as night and day as possible. It’s either A or B, there’s no in between, there’s nothing else because any other forethought just took too much energy. And that was very hard to first of all, explain. And then second of all, deal with because no one can see that.

    Stephanie 19:08
    My dad had said when he came to see me a month afterwards, he said, you know, it’s an invisible trauma that you’re trying to sift through yourself. And you’re trying to reason with the deficiencies that you now have. And I was able to get back physically, I would say about 95%.

    Stephanie 19:30
    And I’m extremely grateful for that I have seen I mean, I have never known anything about stroke until this happened. And of course, after it happened, I started to do some research and humbled. You know, I just was humbled by seeing how first of all many people my age have gone through it.

    Stephanie 19:49
    And second of all, just how different every situation is and how truly grateful you need to be for what you have. So I felt like I was in this bubble of okay. I’m extremely grateful, But the struggle is unlike anything I can explain, it’s hard for me to put words to it, and then it’s hard for me to, you know, become better.

    Stephanie 20:14
    And the irony for me is I actually, I’m a licensed counselor. And so I know all of these things. And it’s like, there’s this filing cabinet in my brain that was just locked, that I could not open. And it was a very trapped feeling, you know, realizing, hey, I can write down the reality as best as I can. But then sometimes it would come back in, you know, it would not make sense sometimes.

    Stephanie 20:47
    So I would say, yes, I feel like I was very blessed physically, to have gotten back with it, but I focused way too much on that, and was not honest enough, was not open enough, and was not realistic with myself enough to understand the cognitive and emotional effects because like I said earlier, I’m a mind over matter, person, but this is very much neurological.

    Stephanie 21:18
    The doctor explained to me, he said, You know, there are brain cells that were lost, that you won’t get back. But your brain will rewire itself, you know, a different way. And so, that was, and still is very hard to kind of come together. And then, as I was realizing all that, the world pandemic started.

    Stephanie 21:48
    And I had already as probably one of the most quarantined people of this year, because I haven’t left my house much at all, since the beginning of everything that happening. But then trying to reason, that layer, I really had to compartmentalize all of that that was going on, because what was even just in my own mind, was very difficult.

    Stephanie 22:12
    And the main thing that I found to truly help me with that was finding a community of other people that have gone through this, because it truly is a situation that you might have a different story. But you can relate in the relearning of yourself, the shock, the so many of the things that came with it, you know, that you’d never would have expected to happen.

    Stephanie 22:43
    And so many people I have never met before have been my biggest saviors, because they were honest. And they would say, it’s gonna take a while, or you might need help, or you might get back. And I had wonderful caregivers, I had an incredible family, and you know, they’re all doing their best.

    Stephanie 23:02
    But it truly is an experience that if you’re able to speak with somebody else, it is the most life giving opportunity, because it really enables a more positive recovery, in my opinion. But I’ve only gone through this once, so I’m not sure.

    Bill 23:27
    You’ve gone through enough. That’s enough. That being said, I think you’re lucky that you’re a counselor, you have the brain to understand and notice things in yourself, you have self-awareness that some people don’t have the ones, the people that are going for counseling may not have the depth of self-awareness, and therefore they need support, they need counseling.

    Bill 23:50
    I’ve been a coach for a very long time. Eight years ago, I had a stroke. And then I needed coaching and counseling myself. So I went and saw a psychologist and a coach. And I did everything I could to understand what blocks I was creating, that were allowing, that I was creating, and getting in my way of recovery.

    Bill 24:15
    So the physical stuff I did as well. But then I realized that my biggest recovery was going to have to be an emotional one. Because I had to come to terms with my health, my well being my almost dying. And my children and my wife and my mom and dad and my family and all the stuff that I wasn’t going to be around to see if I did die.

    Bill 24:37
    And then I had to deal with the cognitive and the mental anguish that that created while my brain was trying to heal and recover. And then I also had to deal with this physical side of it. So it’s a three pronged recovery and people who are just doing the physical recovery, that might be important for them because they’re in a wheelchair or they’re using a cane or whatever, and I get it.

    Bill 25:07
    But they’ve got to do that in combination with the emotional recovery, because that is a massive block for a lot of people. And that gets in the way of the physical recovery, as much as you think that just going to the gym is what’s going to get my physical body back.

    Bill 25:24
    No, the emotional recovery is also going to get your body back, your cognitive and your mental recovery is also going to get your body back, because it’s energy that’s being distributed through those systems. And it’s trying to put some energy there and put some energy there and put some energy there.

    Bill 25:43
    And if you’re got emotional trauma from 30 years ago, that you’ve never dealt with, it’s not gone away, it’s back. And it’s back in a bigger way. Because you’re dealing with the emotional trauma, as well as the stroke trauma. So I really got a handle on my recovery very quickly on the emotional recovery.

    Bill 26:08
    Got that out of the way quickly, I want to say quickly, a year and a half, two years of therapy, you know, I had dealt with a lot of that stuff started apologizing a lot, I love you alot, doing stuff, which was a different version of me that I haven’t really expressed before.

    Bill 26:26
    So that was great. And as that started to resolve itself, then I started to find my cognitive function started to come back. And I started to focus on what I can do to support myself, which was all about nutrition, which was all about meditation and imagining myself achieving my goals and imagining myself walking better and all that stuff.

    Bill 26:51
    And that also then supported physical recovery. So there was this really three-pronged approach that for me started with the heart, that’s where it had to start. And once that process had begun, and I started to clear some of that negative energy around there, then I was able to focus on other things, and it was freeing and relieving.

    Bill 27:13
    And also great to put to rest stuff that have been there my whole life, you know. So what you say about how you’ve understood recovery needs to go. I want to dig a bit deeper there because I want to get a feeling for what were you going through emotionally, what were you thinking about? When, you’ve been diagnosed with this thing, and then also, you’ve come back and you’re not the person that they knew you to be up until that point in time, what were you going through?

    Cognitive and emotional recovery


    Stephanie 27:53
    I would say, first of all, I really appreciate you being honest and open about the importance of the inward-looking at the heart, and then how that, in turn, gave so much more positivity for the cognitive, because I’ve been trying to do the reverse. And I’ve tried to focus on the cognitive and the emotional.

    Stephanie 28:15
    And for me, I was a very outgoing, personable, loving, not perfect by any means, you know, but generally, I have incredible husband and great kids. And you know, we like to be very social and outgoing. And what hurt me the most is the awareness that I am very different.

    Stephanie 28:43
    I am not as excited, or honestly loving at times that my emotional, empathetic side, it had vanished. It was almost like, that’s what the clot went and took from me. Because I would try to find my heart I would try to speak.

    Stephanie 29:07
    And it was terrifying. And then it put me in a place of I used to be really outgoing. And now I’m scared of what people are going to see. Not because I necessarily care as much about what they think but because them seeing this in me shows me the reality of what it looks like. And that was more terrifying to focus on.

    Stephanie 29:37
    I didn’t really want to see a lot of people because I first of all would become overstimulated very easily. And my own kids overstimulated me that was very difficult, very difficult is to try to, you know, a kid doesn’t understand what’s going on. And so, thankfully my husband knew I mean goodness, you get your match during this because they go through a lot.

    Stephanie 30:04
    I mean, but to explain it to a child, you know, not necessarily explain what happened, but you know, mommy’s not as happy or, you know, hey, we just have to be quieter here.

    Stephanie 30:15
    So the emotional side really put me in a position where I had, I remember being in the hospital, I remember them saying, hey, there’s a high chance you’re gonna deal with a little bit of depression. And I said, I know how that stuff goes, I’ve studied it, you know, thank you for letting me know, I really appreciate it.

    Stephanie 30:36
    But you know, I already know how to handle that. So I don’t have to worry about that. And I’ll never forget the look of my husband’s eyes. It was kind of like, Okay, well, just, they know what they’re talking about way better than you do. And I had hit probably, after the second month, a deep emotional place where I had realized, I was shocked, I had almost passed.

    Stephanie 31:05
    There is something now that’s different about me. It’s not like I can dig in there and find it and wake up with it tomorrow morning. I am frustrated, this is taking so long. And it was almost a hamster wheel of negativity that I have really never had an immense amount of before, my self awareness, honestly came more from being aware of other people’s needs.

    Stephanie 31:30
    And that’s how I would go ahead and take care of life. And that’s what made me feel good before. But when that’s stripped, and I can’t take care of anybody, and I need to focus on myself, it was almost like I had started to clean out the mess that I didn’t even know was there.

    Stephanie 31:47
    And then try to recreate a new mentality of how to beware of the negative, but to show the positive and to reawaken, you know, an emotional side that once was there, and then now isn’t, and I mean, I’ve been married to my husband for 10 years. And so we’ve been through a lot and seeing him just kind of, you know, I very much would be attentive to how people would react.

    Stephanie 32:18
    I was very aware of people’s facial expressions and everything they try and say, like, are they seeing something? You know, what do they know? And he was very open with me the whole time, and would kind of say, you know, you’re pretty harsh. And, it’s as if the how would he say it? It would just, it would be, he understood that I was different.

    Stephanie 32:48
    But it started getting to the point where, when we were in the hospital, they’re like, it’s a three to six month recovery. So I was like, oh, three months tops, you know, I’ll be fine. And then when I started to realize that, Oh, my gosh, I’m having a hard time, you know, feeling love for someone, which I never had a hard time doing before.

    Stephanie 33:11
    Where did that come from? You know, I’ve studied and know a lot of stuff. But I didn’t study this stuff. This is something that’s completely different. And it was new territory. And so I would say about a month two to three, I definitely went in to about a depression.

    Stephanie 33:35
    Where I realized that, you know, I was okay with the fact that it had happened, but I was scared of what the future was going to look like, because I didn’t know how much I could control it anymore. And really tried to grasp the tangibles that I could change, you know, just being very simple, okay, just try to give someone a hug, or, you know, try to think more positively.

    Stephanie 34:01
    Try to put more positivity inside me, I realized that the problem is I was, you know, really not filling myself with a lot of positivity, because what I had known to be my love and positivity and, you know, high emotion with other people and being with other people being social, and that’s gone, I had to rethink, you know.

    Positivity and stroke recovery priorities


    Stephanie 34:24
    And so in a weird way, I understand that I have been created to kind of be a different person, but it’s almost, I’m saying this a month 10 I was not thinking it then. But it’s almost as if it really took out all the things that, you know, I really needed that were just kind of noise.

    Stephanie 34:43
    And now I can focus on here’s my purpose. Here is the reality of it. Here’s what’s important here is, you know, here’s where you need to generate your energy and just be a lot more simple and positive and it was still difficult, though, because.

    Stephanie 35:05
    And even still now, I’m realizing I was even speaking with my friends about this recently, because, I would say, I have a grasp of the emotions, but it’s still very hard to feel it. And every day that goes by, I feel like it should be a lot further along. But I’m realizing this process takes time. And there is no time limit. And I need to be patient.

    Intro 35:36
    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?

    Intro 35:53
    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 36:16
    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.

    Bill 36:39
    Yeah, you need to stop saying. And when I say you, everyone who’s a stroke survivor, who is becoming impatient, needs to stop giving themselves timelines, deadlines, goals to achieve by a certain date, because that’s going to be disappointing because you’re not going to achieve most of them.

    Bill 36:58
    And what you need to be doing is looking back on what you’ve achieved, how far you’ve come, Oh, okay. I couldn’t do that a month ago, I’m doing it now. I couldn’t do that two months ago, I’m doing it now. Instead of putting a date and a time on when I’m going to feel this, that and the other.

    Bill 37:15
    Now I know with emotional challenges that you’re experiencing, the heart has neurons in it, the same as the brain has neurons in the heart has around between 30,000 and 120,000 neurons, whereas the brain has billions. And the things that you’re not feeling may have been interfered with for the time being.

    Bill 37:39
    And then you can retrain that to come back in the heart, just like the doctor said, they’re going to retrain parts of your brain that have been missed that are missing, can rewire the same thing can happen in the heart. So be comforted in knowing that it will come.

    Bill 38:00
    And what happens in this moment when people have stroke is before that they were in a team sport called family life, friends and all that kind of stuff. But stroke is like tennis, it’s about the individual. And it’s got nothing to do with anyone else. And the coaches sit way up above the court. And all they can do is go left to right, just watch the game.

    Bill 38:29
    And your husband and your friends are now in the stand watching your game and how you’re playing it. They can judge you as much as they want, they can cheer for you as much as they want, they can criticize you as much as they want. But they are not allowed to talk to you during the game.

    Bill 38:49
    And now you’re on your own man, you got to do it on your own. And when you have the opportunity to make a decision about whether I interact with all those people, or save that energy for me. It’s a very simple decision to make you don’t interact and you save that energy.

    Bill 39:10
    And explaining that to people is the most challenging thing because they think you’re being rude, mean etc. And it’s okay that they remind you of that as well. Because you need somebody to say that was a bit mean, because that allows you to then adjust slightly your behavior so that you’re not coming across as mean.

    Bill 39:29
    And if you do come across as mean or nasty. You can have a conversation and say, Hey, I know that might have sounded a bit mean and nasty, but actually I’m just playing tennis at the moment. I’ve got to do this on my own. Because the energy that I have, I can’t allocate it to this particular place where I did before because that means that I spent three hours in bed.

    Stephanie 39:58
    I think that was a very big pinpoint two was realizing that my energy is not limitless anymore. And that I need to make wise decisions about where I do put my energy. And I think that was also difficult, kind of, like you had said, even just saying, you know, somebody wants to go out to lunch, I can barely keep up with the first couple sentences and realizing, you know what, that wasn’t the best situation for me, unfortunately.

    Stephanie 40:29
    And it sounds very selfish. And there was nothing the person did wrong. It was just the awareness that, I think I had seen a picture at some point when they explained the person, you know, stroke person’s battery life, and how quickly it just goes. And it was so relatable, because it was as if, you know, that was something I needed to learn.

    Stephanie 40:55
    But at the same time, like you said, it makes you very focused on what you do, and don’t put your energy into, and we are actually my husband, he’s been in the military for six years. And so our lifestyle is very, you know, go, go, go, go. I mean, a couple months after it happened, we were supposed to move.

    Stephanie 41:17
    And there was just so many things outside of us that thankfully, he did an incredible job of, like, he would say, just block out all the noise, that you don’t need to worry about anything else, you focus on you. And if that means you read and you sleep, and then you have energy, just to sit and play with your girls for an hour.

    Stephanie 41:37
    So that day, they see that that’s important, and then close the book on that day, and go to the next day. And then maybe we can be one more step ahead. In that part, I appreciated but at the same time, I wish that I would have been more aware, or at least had the guidance afterwards.

    Stephanie 42:03
    This is something I’ve honestly be compassionate about is, you know, everybody recovers much differently. But I had so many questions, and there was so much that was going on that I wished and I looked and I found.

    Stephanie 42:15
    And there’s there is not a lot of resources, or from at least what I could see of people that we’ll talk more about the cognitive and the emotional side, and then just being okay with what it is and then just moving forward every single day, and to look back and say, Okay, I’m better than that day, or you know, what, I’ve plateaued, or I can see I went down.

    Stephanie 42:17
    And you know, that hike, even though I was feeling okay, in the moment, I had to pay for three full days afterwards. And to explain it to someone, again, is a humbling experience for the same time, it’s really become obvious, you know, the people around you that will be on your corners to cheer you on, when they say no, I might not understand it. But we know that you’re not the kind of person to want to sit around and wait to do this.

    Stephanie 43:13
    But to recreate the best new form of you, you need to be as focused and as honest as possible. And that’s, for me taken a lot of writing a lot of writing down my questions, because I will think of something and forget it. I mean, I still get overwhelmed going into a store just to buy things.

    Depression and anxiety

    Stephanie 43:36
    And, you know, I never had explained I had felt, you know, about of depression. And luckily I came out of that. But then something else I had never experienced before was anxieties and being worried. And I used to have a very carefree mind, the things we had gone through. I mean, we had just moved back from Korea a couple of months before and we had gone through a lot.

    Stephanie 43:58
    So, you know, I had never really dealt with, really being worried on a continual you know, not just, oh, I’m worried about this on this day, and oh, the day comes and goes and, you’ll have to worry about it. But no being anxious, first of all, that it’s going to happen again.

    Stephanie 44:20
    I will never forget, at my six month appointment, the doctor had said, Hey, we’re gonna take you off blood thinners because everything looks great. And to be honest, I looked at my husband, I was like, I want to be on them. Because I can’t have this happen again.

    Stephanie 44:35
    I’ve seen it where people have had it again, and the doctor can’t look at me and say it’s not going to happen again. So I would like my guarantee. It’s not gonna happen again. And I’d like to stay on this medication.

    Stephanie 44:47
    And, you know, the doctors they’re way more wise than I am. So of course, I did what he had said to do, but the anxieties after that. Not just that it will happen again. Just all the other things that would come into my mind, you know, just going to the store, and you know, someone getting frustrated if I couldn’t figure out what I was doing.

    Stephanie 45:09
    And it was almost like, being in public was very overwhelming. And I have still, yeah, we’re at over month 10, I’m still extremely limited in my public gatherings, especially with what’s going on world. But realizing that, okay, now that there are anxieties there, now I need to be aware of, you know, how to, how to understand them, but also how to, try to be better.

    Stephanie 45:45
    Always, my motto in life is, you know, every day is a new opportunity, and it’s a new opportunity to get better, and no matter what happened before, you know, it’s a fresh, new clean start. And I think, you know, that’s the beauty in a weird way of the situation is, like I said before, it almost cleaned out a lot of things that weren’t, you know, supposed to be there started to focus in.

    Stephanie 46:08
    But then of course, roadblocks, things come in the way. So, this has been definitely a different situation, I have yet to actually be able to go and I’ve been wanting to go and see a psychologist, I really have, I’ve asked my husband a hundred times, I just wish someone could go in my brain and tell me, what am I missing? Where can I get it from? Same thing with my heart, you know.

    Focus on finding solutions

    Bill 46:35
    I can tell you, you’re in your early days. And anxiety about what might happen in the future is normal. Now, as a counselor, you can better understand and empathize with people who came to you that had anxiety.

    Bill 46:54
    One in three people who have a stroke will have depression, in some form. So you’re one of those, many of those people can overcome it and get support and help, as a counselor, now you understand what it’s like to have depression.

    Bill 47:17
    As a counselor, now you understand what it’s like to feel out of control. You can be a better counselor, as a result of that when you go back to work. At month 10, I was forgetting, who visited me how to write an email, I couldn’t drive, I couldn’t work. By three or four months after that, I started to notice an incremental improvement in my memory, my ability to type that email to write.

    Bill 47:51
    So I focused on that stuff. In that time, I said a lot of apologies, a lot of sorry. In that time, I made a lot of wrong decisions, I abused people verbally, I was rude. I was mean, I was short, I was nasty, and I apologized. So what you’re missing is not anything specific, that anyone is going to be able to pinpoint for you.

    Bill 48:17
    It’s that ability to just go with the flow. And if you go with the flow, and you come to a speed hump, you just deal with that speed hump at that point in time. And whatever you need to get over that speed hump is what you do, just to get to the other side of that.

    Bill 48:35
    And what that’s done is then given you a tool that you now have, say if that speed hump comes up again in the future, you don’t need to worry, work out how to get over it, you just need to access that tool and go for it again. So what you’re doing is you’re just building a little toolbox of things that are going to make you more resilient and able to solve the same problems quicker as they occur in the future.

    Bill 49:01
    And if you take some control in spaces where you can take control, this is what I did. I took control in my nutrition. I took control in how I acted after I misbehaved. And that gave me a part of the equation that meant that I didn’t rely on doctors and other people for everything I relied for them on the medical stuff.

    Bill 49:31
    But I took responsibility for my own stuff. So when I came home, I didn’t worry about the doctors stuff at all. I let them worry about that. I just worried about taking responsibility for my behavior and my action what I put in my mouth and what I focused my mind on so instead of focusing on problems, I focused on solutions.

    Bill 49:54
    The more solutions you focus on, the more solutions you’ll find and you’ll get. I had the amount of problems and more than other people. So I just focused on here’s a problem, what are the 10 Solutions I can allocate to that and which one’s the one I want to actually take action on, which is the solution that I’m going to implement.

    Stephanie 50:15
    That’s really powerful.

    Bill 50:17
    Yeah. Which meant that when I had problems, they weren’t overwhelming, as if there was more problems than solutions, because I’ve got 20 problems. And I don’t know how to solve them at all.

    Bill 50:33
    I just broke it down, one at a time. And I solve that one. And I did have a lot of conversations with people to say, Thanks for the invitation to go out. I can’t do it today. And let me tell you why. Because stroke somehow messes with you in this particular way.

    Bill 50:51
    And I now can’t describe it, but it’s not about you, I want to really be with you, but I can’t, and you’re welcome to come over, and just sit with me for an hour, but after an hour, I might be gone, I might be wasted. So if I am, don’t take offense, might be just a good time for you to go home.

    Bill 51:09
    But just know that I’m not trying to offend you, or annoy you or not be with you, I really, really want to, but I need to reserve my energy. And now that you have a podcast episode, you can refer people back to it and say, Have a listen to it so that you can understand me a little more. And you don’t have to take offense and feel bad about me being different. You know?

    Stephanie 51:38
    I think that has been one thing I’ve also noticed is that a lot of people when this has happened to them, they have been very open. And very, as far as you know, social media is concerned, and very honest and vulnerable about it. And all of those people have encouraged and really helped me, and I have not found that grounding, yet I have you know, as time goes on, I will say okay, I’m going to share a share.

    Stephanie 52:08
    And every single time I almost you know, clam up. And so I’ll do a couple, you know, post here and there, and I’ll just kind of explain it. But it’s just extremely unlike my character, to not just be open and outgoing and honest. And I’ve honestly been looking forward to this because aside from my husband, I have not been able to explain it because I have had a hard time being aware of it. And then as soon as I am aware, I don’t feel like draining my energy. And explaining that sounds terrible.

    Bill 52:53
    I’m supposed to be, so I’m learning from, you know, the internet gurus of the world is how to do this for a living, how to make money coaching stroke survivors, how to sell courses and all that type of thing. That’s what I’m doing. If anyone listening hasn’t worked out what I’m trying to achieve, I want to make this my career my living.

    Bill 53:14
    For three weeks or four, I have not made a post where I talked to the camera about something that I think is reasonable and necessary to share to stroke survivors. And one of those things was the acceptance. I want to make a post about acceptance. And I’ve been thinking about it for about three or four weeks.

    Bill 53:35
    And I can’t bring myself to sit in front of the phone for 20 minutes or 10 minutes talking about acceptance. Now. I’m breaking all the internet marketing rules and all that junk. But I just can’t do it. And I’m not going to I’m not going to do it. Because I’m told by somebody else that I have to do it. I’m going to do it when I’m ready.

    Bill 54:00
    And I can have a lovely conversation with you and all the other guests that I’ve had in the last four weeks. But I can’t do that. And I don’t know why. I don’t know why. I’ve tried many days to get to that point of recording it. And maybe I haven’t accepted something about acceptance that I need to talk about, like, I don’t know. But isn’t it funny that acceptance has made me stuck?

    Acceptance for Stephanie Flynn


    Stephanie 54:25
    It’s powerful too, because it’s like, my first thought, at least for myself is you need to accept yourself, you need to be okay. Even though I will try to say it as much as possible. You know, it’s all good. No being realistic. Am I accepting who this person is now, because there is a lot of positive but there are a lot of things that are different.

    Stephanie 54:48
    But every time I get into that rut, I always come back to the blunt reality that I was given another chance so I need to make that worthwhile. And nobody is guaranteed tomorrow. And I will never forget when it had happened. That Yeah, of course, after that for a while, I had never thought about myself not living until, you know, 60, 65. You know, I never thought about, what it would be like for my husband, my kids, like, was my time to use my time wisely before was I so focused on myself.

    Stephanie 55:29
    Really analyzing my purpose. And not saying that people who haven’t had a stroke don’t have a purpose. I’m not saying that. But to overcome. And, as my husband tells me all the time, and there’s so many gifts I’ve been given, and this has been very blatantly, you know, a traumatic event, but you have had the better side of this.

    Stephanie 55:54
    So we have, I feel an urgency to use that, but kind of like you were saying, you know, I’ve had a hard time just saying, okay, even looking at myself in the camera and saying, you know what, this is how it is. And I’m not just going to say that it’s okay, now I’m gonna have to feel it, and accept it, and keep that reality, keep that momentum going.

    Stephanie 56:16
    Because I know the other people that I have seen that have done that, I know how positively they’ve impacted me. And I’ve never met them before. I know how much I appreciate people’s honesty of the good and the bad. And I think I used to make it look like, everything was good.

    Stephanie 56:34
    You know, if there was something bad, it’s okay, but the reality is, it’s okay to be good. And it’s okay to not be good. But I need to make this worthwhile. And I think that that’s why I’ve been trying to, figure out when’s the most appropriate time to be as honest about this, because I want to be ready for whatever opportunity I’m given.

    Stephanie 56:56
    And like you said, as far as counseling goes, man, I can relate on a whole other level now. Before, I just knew all the textbook answers of how to solve and I had the heart to help, but I have the mind to understand, which is like, Whoa, I didn’t realize that I thought that, you know, people in my profession, which I’ve not been able to professionally practice, because of the military, I’ haven’t been able to do that for a couple of years now.

    Stephanie 57:27
    But just in our lifestyles, you know, we like to have an open door policy, you know, we love people. But now, the, when I hear somebody say the word, depression, anxiety, things are different. I’m different, you know, acceptance, you know, being honest about the bad.

    Stephanie 57:49
    It’s almost like I can get on their level so much quicker than I could before. Because now all the BS is gone. I do have moments kind of like, you were explaining, I will have times that I will see myself lash out or be you know, a form of emotion that I had not really dealt with a lot my life is anger.

    Stephanie 58:17
    And I my impatience, or my anger will happen so quickly, that I’m just like, Who is that person? And I have to I will realize that later. But then it’s, I have to go back to you know, being honest with myself apologizing, realizing it, but also, now I understand people say they have dealt with anger.

    Stephanie 58:39
    And I know, there, it’s on so many different spectrums. But I think just being honest with yourself, and to be real, I’ve had to write it down. And I’ve had to see my own handwriting write it, that has helped me see the reality of who I was in January, who I am now, and being okay with.

    Stephanie 59:01
    I’m so glad you said that about the timeline. Because, you know, you can read that you can recover this time or this time, and my husband even said, We’re about to hit your one year, like, you know, what, there’s not a number dial above our heads of how many more days left, we have until we’re recovered, quote unquote, you know, or maybe this is the recovery is it’s just somebody that is, you know, I’m in the same body but a lot more.

    Stephanie 59:31
    Before I was saying new, but other people have been helping to say renewed and I appreciate that perspective. Because, you know, it happened over the time of having to, you know, hash out why it happened, is it going to happen again, now, I’m on the other side where it’s like, okay, it is what it is, let’s do the best we can.

    Stephanie 59:52
    And, you know, being honest with myself that it’s you know, If I got angry just an hour ago because I was starting to get stressed out about even just doing this, which I’ve been looking forward to so much. But I really wanted to be as clear minded as possible. And my kid just doing something small and it was just like earth shattering. It was not a big deal. It was super small. But I have to be more aware of my reactions where before I would be, yeah, it’s fine.

    Bill 1:00:25
    So it’s interesting for me to try and engage people to come on the podcast and read their comments in the messenger app, or wherever it was that I contacted them all via email about, okay, when will I be on? What will I say? What will I be about? Who will I, and all these questions, you know, your personality comes back in all these ways, which has always been there.

    Bill 1:00:53
    And they’re trying to control what’s going to happen in the podcast. And all I’m saying is because we’re just going together to have a chat, if you’re planning for every chat that you’re going to have every day, which is some work that you need to do on that. And it was interesting to read, yours, will be okay, for that day, you constantly checking in with me to make sure that I was going to be available.

    Bill 1:01:17
    And I’m like, yeah, I’m available, if you’re available, if it works for you, if I can make sure that you’re going to be well enough. And because I understand that stroke survivors have to cancel, or they’re not feeling great that day, or something else came up, whatever. But I see that side of people, and it’s their personality, and it’s no longer serving them, because now they’re dealing with stroke.

    Bill 1:01:41
    And if you’re going to be that frantic about everything, as well as try and deal with stroke, it’s just going to be overwhelming. Again, it’s harder to deal with. And I love what you said about purpose, use the experience of what’s happened to you to find your purpose.

    Bill 1:01:57
    Now, don’t get me wrong. Purpose is not something you think about in your head, and then you find it and then you do it starts in your heart as well, it’s why the emotional healing has to happen. Because then your purpose can come to life. For me, my purpose just started because I thought I’m gonna try and find other stroke survivors. Because eight years ago, there was no podcast, there was nothing happening.

    Bill 1:02:21
    And I wanted to meet people that were like me, so I didn’t feel weird, and strange and alone. And I thought, I’m just going to reach out in this way. And then if they’re happy to, I’m going to share that story. Because I need to be able to really listen to those episodes over and over again if I need to.

    Bill 1:02:41
    And what I didn’t know was that I was discovering my purpose. And then a few years later, I realized that this podcast that started off selfishly, for me was actually more for other people. And the more that they responded positively to it, the more I got out of it, and the more I had to continue doing I couldn’t stop.

    Bill 1:03:03
    And then somebody said to me, wouldn’t it be good if you can make a living from this? And I was like, Wow, I didn’t know that was possible. I’m not making a living from it right now. And I don’t know if I will be in 12 months. But the idea that I can do this, connect with people from all over the world, realize that I’m not alone, realize that I’m similar to all these other people helped me uncover my purpose in life, which was to connect with other people really, and to make their life better.

    Bill 1:03:35
    And to do that, will make my life better at the same time. So in Episode 121, I interviewed a guy called Nick Kemp. And Nick is a guy who looks at this Japanese way of finding purpose, they call it Ikigai. And the Ikigai way is not something that you can actually pinpoint. It’s more of a felt sense. It’s a sense that’s internal, that when you’re experiencing purpose, or you’re experiencing that moment, that’s the Ikigai moment.

    Bill 1:04:13
    And it’s like, it could be at a pub with your mates having a drink, it could be riding your bike, it could be at work, it could be anywhere, it doesn’t matter. It’s kind of all encompassing, and it’s not. My purpose is just to do podcast and release them and speak to people about it. Part of my purpose is to be able to leave my day job and come home and record a podcast where I never used to be able to do that before.

    Bill 1:04:40
    I had to be at my day job all day, every day that sort of at least what I told myself. And now you know part of my felt sense of I’m contributing to the planet to myself to my well being to my emotional state and to other people’s emotional state has come from not really knowing what I started five years ago, it was just starting it.

    Bill 1:05:05
    And then seeing where it evolves from and how it goes, and what it ends up becoming. And then being comfortable with people going, you know, it could turn into this, or it might turn into that and me not holding on to those ideas. Maybe just going alright, well, if it turns into that, it turns into that, let’s see what happens.

    Bill 1:05:24
    And then all of a sudden, I’m five years down, I’ve spoken to 123 people. And it’s an amazing thing that the Bill before stroke, never contemplated this stuff. This was not a guy, not the guy that you’re talking to now, it’s a completely different guy, he was so thick and so stupid, in a loving way.

    Bill 1:05:51
    And here, he’s more aware more evolved, his emerging out of his shell into this different version of himself that people don’t recognize, but they love. And they go, okay, we can now be more vulnerable around this guy who was our friend, and we spoke about the football and we spoke about politics, and we did all this junk.

    Bill 1:06:15
    And now we can talk about emotional stuff. And we didn’t have the ability to talk with him about that emotional stuff before. And isn’t that great to be able to offer your friends that beauty that wisdom, and also my wife, you talk about your husband, I mean, my wife, she went through the wringer man, did she go through the wringer, I interviewed her for Episode 100. And in that episode, we spoke about what it was like for her to go through stroke.

    Bill 1:06:46
    And to have to deal with me, and also what it was like to have to deal with my brain surgery, two weeks after my mom passed. You know, to talk about putting somebody through the wringer. And now me being able to hold the space for her. Because I understand how emotions are important in my life, I can now allow her to be emotional in her own way, with me.

    Bill 1:07:15
    And before the age of 37, before my stroke, I didn’t know how to do that. And we were missing a critical part of our relationship because I couldn’t be an emotional kind of guy and make space for her. So your journey is just beginning. And your learning and your connection to your husband and what you’re going to be able to offer people and not in a monetary way or in a you know, like just your offering as a human being is going to evolve and it’s going to grow and you’re going to be somebody that they may not recognize, but they’re going to fall in love with again, and they’re going to go, Wow, this person is somebody that I can look up to.

    Bill 1:08:01
    And you know, they’ll do the old cliche, you know, you’re so inspiring, and all that kind of stuff they have one word to describe so much more, they don’t know how to articulate it more than you’re inspiring. That’s not what they mean, you know, they mean that they can, they love you more they can be more around you than they could before. Why? Because you had a bloody stroke.

    Stephanie 1:08:31
    Which, I mean, I always thought I was writing my own story and making my own choices. And then the something like that, that completely takes the control away. And for another time, I will say, I have also learned, you know, my recovery has been one thing, but then seeing what my husband has gone through and seeing, the incredible effects that it has had.

    Stephanie 1:08:59
    I have appreciated the people, which is actually just a small handful. I mean, everyone’s worried about how I’m doing. But the people that have asked him how he’s doing has actually helped me more because he has needed someone to talk to, and someone to be honest with because, you know, not only did have I changed, but it’s a daily kind of like, explaining your wife, like it’s a daily thing.

    Stephanie 1:09:25
    And, it’s a journey that you know, of course, if they probably could hit a button and say, you know, I always say I was like, you know, I miss January 7 stuff who was completely fine and January 8 stuff is completely different. And, you know, he has always been so accepting but I would be lying if I said you know and hasn’t put us in positions where it’s like wait, I’m a different person now does this mean are we supposed to still happen?

    Stephanie 1:09:56
    You know, is this a new change? You know, I mean I understand we have kids, and to have him hear me say these things is, he just had to stomach and had to deal with and, again, focus has been on me, but the people that have helped, which, like I said, and not in a bad way, but the small amount that he’s able to speak to, have really given him so much more life and hope, I think, actually, that’s a big word.

    Stephanie 1:10:33
    That it’s going to be okay, and or what she says, You know, I guess this is what true love is when you know, and you make the commitment, for better or for worse, I mean, this is the worst we had not anticipated. But he has always said, you know, but you’re still here.

    Stephanie 1:10:53
    And, that’s something that we have learned to really cherish and hone in and to be more intentional about is we have always been so others focus that inside our own bubble, it’s so fulfilling. And it’s so, just the simple, just the four of us being together has put us at a much different pace.

    Stephanie 1:11:23
    But at the same time, I never realized that, how much we all needed it. And it has been a journey. And I think to be honest, you’re probably out of the 10 months, this has happened, I haven’t begged to spend with like anyone, which is gonna sound so terrible, especially to people who have, you know, if I do one thing with somebody that I’m done for the next day or two, and I think when people see me do something like okay, well, let’s plan something else the next day, the next day.

    Stephanie 1:11:55
    No, please don’t be offended. I used to be a marathoner, you know, like, I could not, as far as physical, I’m not running. But as far as social interaction, like, let’s do this, and let’s do this, let’s do this. And I’m not there right now, who knows if I’ll ever be back to that place.

    Stephanie 1:12:14
    But the place that I’m at right now is just very focused, and intentional and realistic in finding out what the inner feeling of being able to feel the purpose, and I know, like, my heart jumps every time. I see, you know, the reason why I actually found you is because I can’t remember her last name.

    Stephanie 1:12:38
    But Kelly, from Hawaii, she, oh, my goodness, not only very real and open and genuine. But you know, her story was just, incredible. And she keeps telling it, and that’s what I think has helped me is people keep telling their story, or people is keeping open. And if they want to not tell her story for a couple weeks, and then come back and say, hey, it’s because, you know, that was a lot for me to deal with.

    Stephanie 1:13:05
    But this is what I chose. It’s like, you’re getting back the control that you thought you lost when this happened, but you’re really just realizing No, the more I’m aware, the more I can take care of the things that are important. And, you know, we go from there. So I very much appreciate this. This is an extremely great form of therapy.

    Stephanie 1:13:29
    I think, should be charging a lot of money. And I think a lot of stroke survivors would throw a lot at to be honest. Because I think, you know, in speaking from a therapists mindset, you know, I know the word is escaping me. I know, like the cliche, I know, the, what it looks like when people, you know, it looks like to go get help, but it just needs to become more of a realistic thing.

    Stephanie 1:13:57
    So it can reawaken, you know, marriages that, hey, we don’t know what’s going on, but we’re going to seek and we’re going to find out what are the areas that we can learn from this and become better. And, maybe we both weren’t really focused on each other as much before, but now we’re extremely focused on each other and, you know, for better or worse and gratefully, I mean, we’re still here though, and we wake up tomorrow morning, we still have another day.

    Stephanie 1:14:29
    So just trying to run with this as best as I can. But also this is coming off of me coming back from the beach, which I think was the best time I had all year just to be just to let go. And just to relax. I think it’s really understated how much a stroke survivors we’re always trying to figure things out and then to rest and but just to relax and to have that steady pace of just contentment.

    Stephanie 1:14:29
    Was unbelievable and at least for me, and everybody has their own thing that, you know, they feel most comfortable with. But for me and even be with my family, it was just like, we were in heaven. It was. I wanted, I was not kidding when I posted and I said, I want to figure out a way to make her Yeah, I mean, because it, it was incredible. So this timing could not have been more perfect.

    Bill 1:15:31
    I’m glad with regards to, you know, I like to say to people, if somebody who’s doing something that you want to do, it’s possible for you to do it as well, if they’re living by working four days a week, and you want to work four days a week, it’s possible, what you need to do is find out how they did it, and do what they do.

    Bill 1:15:50
    Similarly, the way that’s going to suit you to make it possible, does that mean you have to make some changes or fix few things, that might mean that but there’s no reason why if a human A has done something, human B, can’t do it. And you can get help from somebody to help you find a way to get to that point.

    Bill 1:16:16
    So that you can live the kind of lifestyle that suits you. Kelly was on episode 99, you know, she had an ischemic stroke probably caused by being on the pill medication. And I can’t believe the amount of people that I’ve spoken to in the last 20 episodes that have said something similar.

    Bill 1:16:39
    The great thing about women who have a stroke is they tend to be more open, more likely to share more likely to get out and connect with other people, I struggle a lot to find men to come onto the show. And I don’t know why. And while I do know why, because they’re dumb like me, like I was, and they need to become wise.

    Bill 1:17:06
    And until they become wise, they think they’re going to solve all their problems on their own, and that they have all the solutions and that they can’t be vulnerable. And they can’t do all these things. So that’s why men don’t do it, they feel like you know, they need to be men, and they need to, you know, show this front of how they’ve got everything under control, and everything is sorted.

    Knowing when to reach out


    Bill 1:17:30
    And I tried to push through a number of times these men barriers, and I didn’t have the skills to do it. Because I didn’t seek out the right help. I didn’t go to the right person to guide me. And then I thought I could solve my problems of 37 years in two sessions. I was gonna go twice, or speak to the counselor, then we’ll get sorted, and I’ll move on with my life. And I’ll be better and it never worked.

    Bill 1:17:57
    So I started a lot of things, but never followed through with them. But then after stroke, I had that out of the four years between the first bleed and the third bleed, and then surgery, I had so much spare time because I was at home, the majority of the time doing nothing trying to recover.

    Bill 1:18:17
    And I thought, well, here’s a good time and opportunity for me to focus on fixing some of those things that I’d attempted to fix before but hadn’t really allocated the right amount of space and time to do it, you know. So it’s a conversation that needs to happen. That’s why I’m having it so that you and people like you can come on and have it and begin that conversation and then get curious about okay, what did I get out of that? And do I want more of that?

    Bill 1:18:54
    Do I want to give more of those things that I never thought I would get out of this conversation that surprised me in a loving way in a great way. All right. And if I do want to get more that What do I have to do? Well, I have to have more conversations, but I just have to have them.

    Bill 1:19:11
    And if I have them, more great things will come from that more learnings, more understanding more awareness, more empathy, more sympathy, more kindness, and then more recovery. And that’s what. And that’s what I think begins recovery from anything.

    Bill 1:19:30
    It’s always conversation, whether it’s a trauma from the past or a new trauma. It’s a conversation about it and finding people who are prepared to just hold your hand and say, we’re going to talk about this. It’s going to be hard, but done it it’s going to be easier.

    Stephanie 1:19:48
    Mm hmm. That is so true.

    Bill 1:19:51
    Then you’re going to start to feel freer to explore more things. And once you get into the habit Bit of having hard conversations and loving the other side of that, and going, Wow, that’s really relieving, or that’s freeing or that’s whatever it is, once you get good at that, then it’s easy to go and have more more and more harder conversations. And then there’s more and more space in healing and recovery that happens. So that’s kind of my philosophy.

    Bill 1:20:23
    And I had a feeling that your philosophy was similar when I reached out. But of course, I’d love to hear about your philosophy in the context of stroke. And I just want to reassure you that it’s early days, things are going to get better, you’re going to have hard days.

    Bill 1:20:40
    And when you face them, they’re going to relieve you of something that has been blocking you and being getting in your way. And it’s going to be a better life. For this experience, you’re going to I don’t know, like, you’ve never read a book about a guy who had a perfect life, everything went well. It was fantastic. Awesome, great story. And you know, they died at 110 and everything was perfect.

    Stephanie 1:21:11
    That’s so true. That is so true. And I think there is so much beauty in, you know, being comfortable to speak to people you’ve never met before. And I think it’s so powerful, that there is the space for that, first of all, I mean, that’s most important is that there’s the availability.

    Stephanie 1:21:33
    And then the people that are wise, and that you saying to me them in the early days, I mean, I feel like I’ve passed my expiration date when I was, you know, three to six months, you know, you should be done. So to hear those words are more empowering than what I’ve heard in months.

    Stephanie 1:21:53
    And it’s such a beautiful thing to be able to, like I said, to have this to have this opportunity. But at the same time, you know, it’s almost like a weird euphoric feeling afterwards, because it’s like, wow, okay, here’s someone I’ve never met before, you were just honest about a traumatic situation, you gained incredible wisdom.

    Stephanie 1:22:16
    And then, you know, I promise you, I’m a much happier person leaving this conversation than when I started, not because I didn’t want to have the conversation. But just because, you know, there’s all those uncovered files in your filing cabinet. And one of the biggest things that a lot of people told me to push away, when this happened, I kept saying, this was stress induced.

    Stephanie 1:22:40
    I very, very, very, very strongly believe everyone said, No, that’s implying that you brought it on yourself, you know, it’s not you. And I’m saying no, I’m not saying I brought on myself, I’m saying, I’m aware enough to know, the stress that I was under, and now I’m so passionate to, you know, to have people just be more open and to find a place that, you know, we don’t have to be putting ourselves in those positions, not saying if you get stressed, you’re going to have a stroke, I’m not implying that.

    Stephanie 1:23:08
    But just saying, I’m having to relearn a new life to minimize that, just so that mine and other people’s lives can be better, because not going to help situation if I’m not going to be able to help other people, if I am over stressing myself, and I think I’m really encouraged from the conversation to really explore, you know, this new person that I hope to have a lot to give, because that is the common denominator from the stuff before and the stuff after is I’ve always wanted to give.

    Stephanie 1:23:43
    But now I want to give a little bit more intentionally with a different type of purpose and a different type of relation and understanding that, you know, I never used to look for help or to ask for it. But you and other people have gone through this have been, you know, kind of like the guiding light to say it’s gonna be okay.

    Stephanie 1:24:07
    We thankfully have this platform, and hopefully, it continues to grow. Unfortunately, people keep continuing to have them. But that’s where this platform was so important. Because when the doctor said me, oh, this never happens to anybody. And then, you know, you’re perfectly healthy, this is just freak accident, move on with your life.

    Stephanie 1:24:27
    Well you know, I have met a lot of people that, unfortunately, have been through a similar situation. And not that I want to normalize this by any means, but just to be more aware, and to be good, you know, encouragement, or whatever that’s going to look like so I really can’t thank you enough.

    Stephanie 1:24:50
    I’ve taken so much. I’ve tried to be taking mental notes and I’m going to be I have my notes that I’ve put in here that I was going to talk about, but I’m excited to go into write these things down. Because at the end of the day, honestly, they’re life giving, you know, and it’s very important, especially with the status of our world right now.

    Stephanie 1:25:09
    It’s just crazy and everything as it is, and we need a lot more hope, I guess I’m gonna go back to that word a lot more hope for something better, because it’s definitely there. We just need to find it. And I appreciate the people. You know, my husband’s been with me through this whole entire thing.

    Stephanie 1:25:28
    And he’s been incredible, but I’ll probably come up with conversation he’s gonna say, I’ve been here this whole time and you’ve not been this happy. You know, that’s just because there’s beauty in relating with other people. That’s why it’s called relationships. You’re supposed to be able to relate.

    Bill 1:25:42
    That is beautiful on that note thank you so much for being on the podcast. And when we finish this, just go there and just tell him what you really think of him and give him a massive hug and a kiss.

    Stephanie 1:25:55
    Thank you, he’ll appreciate that. So thank you so much. I really appreciate it.

    Intro 1:26:05
    Discover how to heal your brain after stroke go to recoveryafterstroke.com. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:26:32
    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 1:26:49
    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 1:27:10
    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 called triple zero if in Australia or your local emergency number immediately for emergency assistance.

    Intro 1:27:32
    Or go to the nearest hospital emergency department medical information changes constantly. While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content you do so solely at your own risk. We are careful with links we provide. However third-party links from our website are followed at your own risk and we are not responsible for any information you find there.

    The post Vertebral Artery Dissection And Stroke Aftermath – Stephanie Flynn appeared first on Recovery After Stroke.

    1 hr 29 min
  • Muscular Dystrophy And Stroke – Courtney Gabrus

    Muscular Dystrophy And Stroke. Muscular dystrophy is a degenerative condition that increases the risk of ischemic stroke. Courtney Gabrus was living with muscular dystrophy when at age 22 she also experienced an ischemic stroke.

    Socials:
    www.instagram.com/courtneygabrus/

    Highlights:

    00:44 Introduction
    02:49 Muscular Dystrophy
    07:41 Birth control pills
    11:26 Resilience
    20:13 Reading difficulty after stroke
    28:43 Connecting with someone with a disability
    37:30 Reasons to reach out after a stroke
    46:30 You don’t grow when you’re comfortable
    51:35 Medical Marijuana

    Transcription:

    Courtney 0:00
    Absolutely. Just knowing that you know, you can talk to a million, not a million but you know, thousands of people that I thought I was the youngest that had a stroke. And now I was like, oh, okay, I’m not the youngest, I was just like, so surprised though I was so young. And I thought, you know, old people have a stroke, not young people.

    Intro 0:31
    This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.

    Introduction


    Bill 0:44
    Bill from recoveryafterstroke.com This is Episode 123. And my guest today is disability advocate, Courtney Gabrus. Courtney was already living with Muscular Dystrophy when at age 22, she also experienced an ischemic stroke.

    Bill 1:00
    Now just before we get started, if you have ever wondered what else I can do to help you with your stroke recovery, you should know that you can now get recovery after stroke coaching right from the comfort of your own home.

    Bill 1:11
    I too am a three-time stroke survivor and a brain injury survivor. And I have built for you what I was missing when I was sent home from the hospital in the hope that you don’t have to do stroke recovery as tough as I did.

    Bill 1:24
    Support packages give you access to a variety of tools 24 hours a day, seven days a week, so that you can also work on other areas of stroke recovery that you don’t get the chance to at physical therapy or rehabilitation.

    Bill 1:37
    With tailored support available for less than $8.50 per week. All recovery after stroke packages bring stroke recovery to you in the comfort of your own home. to try out a recovery after stroke support and see if it is right for you.

    Bill 1:51
    You will get the first seven days free as well as a 30-day money-back guarantee no questions asked. As a bonus, you will also get to face to face zoom support calls with myself to help take your recovery to the next level.

    Bill 2:05
    Go to recoveryafterstroke.com/momentum to sign up now. It won’t cost you anything for the first seven days. And you will get a full refund. If you’re not happy after 30 days. You have nothing to lose and everything’s again. And now it’s off the show. Courtney Gabrus welcome to the podcast.

    Courtney 2:26
    Thank you so much. I’m so happy to be here.

    Bill 2:30
    Oh, happy to have you here. It looks like you’re just chillin kicking back lying down. Is that on your bed or your couch there?

    Courtney 2:37
    My bed. I handled my room this week. So I’m just soaking it up.

    Bill 2:45
    Well done. Hey, Courtney, tell us a little bit about what happened to you.

    Muscular Dystrophy and Stroke


    Courtney 2:49
    So, first of all, I have Muscular Dystrophy. Basically, Muscular Dystrophy weakens your muscles, progressive. I have a rare gene that only 50 people have this Muscular Dystrophy that I have.

    Bill 3:12
    In the whole world?

    Courtney 3:14
    Yeah, the whole world.

    Bill 3:18
    50 people that you know.

    Courtney 3:19
    Yeah, yeah. Like in studies, yeah. So I’m a rare one. So yeah, I went to college. In Florida. I’m originally from New York. And my family. My mom moved with me because I had to get caregivers. I’m in a wheelchair. So, I started school. And I was a year in as a junior, I went to community college for two years, and I was a junior.

    Courtney 4:03
    I went home Thanksgiving, kind of caught like a cold or a flu. So it was a stressful semester and I’m sick and doing all things that I shouldn’t have done. And so yeah, I finished that semester. I was so happy. It was such a tough semester with stats and all things.

    Courtney 4:35
    And I was hanging out with my girlfriend and we had a nice time. And my mom is a nurse so she was in the room next to my room. And I thought I was having a party pack. So I called my mom and I have never seen this and feel this you know, pain luckily like the hospital was, like 10 minutes.

    Courtney 5:03
    So my mom works from that hospital. And we got in and it was just, it was gone. And we did x-rays and CAT scans. And I was like, okay, like, yeah, I’m just gonna go home and they’re like, no, you have to stay.

    Courtney 5:20
    And I’m like, why? Like, no, like, I have plans tomorrow. And mom’s like, no, Courtney you have to stay. And I was so mad. So mad, I’m like, okay, fine. So the next day, I had Chinese food, with my brother and my friend in the room just chilling.

    Courtney 5:41
    I’m like, Okay, I’ll be out like, the next day. And they’re like, okay, like, It’s weird. Like, you’re here. I’m like, Yeah, whatever. I’m gonna not think about it. So my mom worked from that hospital. So she had to go to work at like, 5am the next day. So she was like, checking with me, and I was having a stroke.

    Courtney 6:10
    And I don’t remember that part. But my mom obviously was a nurse, and she was like, you’re having a stroke. So they take me into CAT scan MRI, and I had a large, clot on my left brain. So they took it out. But, the damages were pretty difficult to think about.

    Courtney 6:46
    And, you know, we’re flushing about that. I was in a coma for four days. And I woke up with my family that are in New York, in Florida. I was like, I was just so confused. And my aunt was like, you had a stroke. And I’m like, I don’t even know what is a stroke, I was only 22, and now I’m 26.

    Bill 7:22
    Is someone who has muscular dystrophy, more likely to have a stroke, or is that unrelated?

    Courtney 7:28
    Yes. Because my heart weakens when I get older.

    Bill 7:35
    Okay, so Muscular Dystrophy affects everything in the body, every muscle.

    Birth control pills

    Courtney 7:41
    Yep. And we don’t really know, how my genetic like issue that, you know, that rare gene that like, we have no clue about, they don’t really know if it was the Muscular Dystrophy or the birth control. And I have no clue for four years later.

    Bill 8:11
    Okay so the birth control is coming up more and more often in conversations.

    Courtney 8:17
    I listened to that podcast about the birth control. And I’m like, that’s the same, like issue that I had.

    Bill 8:29
    Well, what it’s so common, and I’ve never heard about it before. And now I’m hearing about it all the time. People who are on birth control, getting symptoms of stroke, and they don’t know whether it’s linked to it or not, but they all have been told briefly by the doctor.

    Bill 8:48
    There’s a small increased risk of stroke when you’re on the birth control. And that episode was Episode 118 with Priya Sharma. And Priya was, you know, very young as well.

    Courtney 9:02
    I listened to it like an hour ago.

    Bill 9:06
    So you’re not on the birth control.

    Courtney 9:09
    So, in muscular dystrophy, I got my period so heavy that I was sick for like two weeks. So now I’m not on the whole pill that has estrogen, I think. So I’m on the mini pill that doesn’t have the estrogen.

    Bill 9:36
    So Muscular Dystrophy causes complications with the menstrual cycle and therefore many people who have Muscular Dystrophy also have a requirement to take the pill to help them.

    Courtney 9:51
    Yeah, exactly. It just easier. You know, I was just after the stroke. So I lost the ability to talk and my right body is paralyzed. My right arm doesn’t move. So, when that happened, I was just so taken back, I was just, only 22 I woke up with my, you know, my family, I didn’t speak and I love to talk.

    Courtney 10:29
    So I went to, you know, I think rehab for a month in Tampa. And, you know, they were okay, but not New York standards. And, I just had to relearn everything, pretty much by myself or friends and family.

    Bill 10:56
    Yeah, it’s interesting to hear from somebody who’s so young, who has had a stroke and had some other health issues, like yourself, does muscular dystrophy, kind of make you more resilient when it comes to now dealing with a stroke as well, because you’ve had Muscular Dystrophy all your life, you’re a tougher person than most of us anyway.

    Courtney 11:24
    Yeah. Yeah.

    Resilience after Muscular Dystrophy And Stroke

    Bill 11:26
    How does it help to have that understanding of how do I overcome challenges when now you’ve faced with a stroke as well?

    Courtney 11:37
    So when the stroke happened, I remember that I had a ticket to go to the Red Hot Chili Peppers conference concert with my best friend. And I was like, I’m gonna go like, this is a once in a lifetime opportunity like I’m gonna go.

    Courtney 12:00
    So I really think that like my resilience is like, just going day, like, you know, really, day after day, just bringing a positive attitude. I mean, trust me, there are cries daily. But my mom is really resilient. And really awesome mom, and a nurse and that’s really like, that’s why I’m alive because she had so much more education.

    Courtney 12:40
    That really no one else, but because my mom literally studied like Muscular Dystrophy when I was growing up, because there were not really research about muscular dystrophy. So my mom literally taught the doctors.

    Bill 12:59
    So what you’re saying is that a combination of your mom, and also Muscular Dystrophy is possibly something that can get in the way of everything.

    Bill 13:13
    You’ve got this concert coming up once in a lifetime. And what you’re gonna, you just got to find a way to get there rather than not to go.

    Courtney 13:22
    Exactly. Yeah so resilience and getting through. And I think, once I got through, I was like, that was a long ride. But like I’m speaking, so that’s like, an accomplishment that I’m grateful for.

    Bill 13:50
    When you went to the Red Hot Chili Peppers concert what was it like?

    Courtney 13:54
    Oh my god, I cried. I was just like, I made it, I think it was, February in March. So it’s like, three months at the stroke. And I’m like, I made it like, I was just so I feel like, my brother and me went together, and we’re just crying because that was just like, the only thing that like, pushed me to get out of rehab in the hospital. And I had school. I was like, Oh, I’m gonna go to school in summer. My mom’s like, um hm I didn’t go back.

    Bill 14:00
    But you went to the Red Hot Chili Peppers concert?

    Courtney 14:42
    Of course.

    Bill 14:44
    Is it easy for somebody who’s in a wheelchair to get to a concert and to sit in a good location and all that kind of thing?

    Courtney 14:51
    Yeah, that’s the perks.

    Bill 14:54
    Is there a special place for people who have

    Courtney 15:01
    It’s hard. But now I think now like, two years ago, now they’re like, okay, we have special seating, blah, blah, blah. And it was really awesome. Because I had so much events at that Marina, and they love me and they’re like, Oh my God, Courtney love you like, right here. So it was just a really awesome experience.

    Bill 15:31
    Isn’t it amazing how a concert can be the motivation why somebody needs to get better from stroke or from whatever they’re going through. Because if we can have something to aim for, that we’re passionate about, that we’re really going to enjoy that we’re really going to love.

    Bill 15:50
    Maybe that’s going to be the key to making recovery happen a bit quicker, or put us in a mindset where we don’t have to think about what we can’t do we have to think about how we can get there.

    Courtney 16:05
    Absolutely, I think just powering through it and then coming out and like you are just so mesmerize because you went out, you know, you got through it.

    Bill 16:19
    Many people listening and watching on YouTube will be saying, I was gonna go to that concert, but it would have been not worth the trouble. Or it would have been too hard. What would you say to people like that? Who are thinking of canceling an event because they look different, they feel different, they had a stroke, whatever. What would you say to them?

    Courtney 16:42
    Oh, so I don’t know, just go don’t care about people. You know, when I was younger, I really was insecure about my, braces and my wheelchair. And now like, I have like the best perks, like you’re gonna go in a general admission like Stand. I’m you know, sitting and having like, the greatest time, but it just, you have to be present and just go, I think people are now or thinking Oh, like, I just had, you know, put makeup on.

    Courtney 17:29
    Actually, so after the show they took me off of birth control. And I had literally severe acne that I never had. It was cysts on my like face like, literally hurt so much. And I went, I was like, fuck it like, and that acne stayed for years. And I was so insecure. But now, I’m like, you did so much things that you like, couldn’t have done without the stroke.

    Bill 18:15
    I find that fascinating that some things you’re able to find within yourself strength and resilience and all these things that you found were inside of you. But you had to have a stroke to find it. I mean, it’s such a crazy thing, but you found it.

    Courtney 18:33
    Yep. And it’s hard to tell people don’t worry it. You know, because they don’t have the stroke experience.

    Bill 18:48
    When you’re at the concert, are you like me when I go to a concert? I just forget about everything.

    Courtney 18:53
    Yep. That was me. I was just so in awe because i’ve heard and like play the albums. I mean, probably like 15 years with my dad and he was obsessed with the Red Hot Chili Peppers. So that was like my childhood and I was just this is so worth it. It was just so amazing. Because I you know, I heard them for years just to see them and like after the show and got me through that was just amazing.

    Bill 19:37
    Who’s your favorite Chili Pepper?

    Courtney 19:42
    I think like the whole group it just.

    Bill 19:45
    Choose one come on choose one.

    Courtney 19:50
    I don’t know, I just love all them. I actually have this book Scar Tissue you and I want to read it, this Quarantine so it’s on my bucket list. Audiobooks and books got me through also.

    Reading difficulty after stroke

    Bill 20:13
    Yeah, I love audiobooks, I can’t really focus on reading too much, especially after the stroke, it’s a bit of a pain to sit there and look at words, I think the words on the page kind of make my brain more tired than normally. I love audiobooks. And they make it possible for me to keep up to date with the latest book that I love, which I may have bought it previously just left it on the bookshelf, and it’s a real difficult thing for me to have books on the bookshelf that I haven’t read. I don’t enjoy that.

    Courtney 20:47
    Me too. But yeah, my mom was really, she loves books. And after the stroke, I was depressed in the hospital and she was like, let’s like listen to music and music was honestly the best source of just keeping me positive in the hospital and rehab. I played Ed Sheeran, Coldplay, and, you know, everything that, you know, I grew up with, you know, and I think music and audiobooks was the key.

    Bill 21:29
    Yeah, music. Coldplay, you mentioned is one of my favorite bands as well. They’re awesome. I can see why you would listen to that. They’re inspiring. And they really, the music really, sort of reaches a lot further into your soul, than, you know, external experience. Tell me what your days are like day to day. What do you get up to? How do you start your day? And how do you move through the day?

    Courtney 21:57
    Now in quarantine?

    Bill 21:59
    Well, that’s boring. No, not in quarantine, because we’re all doing the same thing in quarantine nothing.

    Courtney 22:05
    Um, I’m just, yeah, so now, after the stroke. I’m originally from New York. So we actually moved back to Long Island three years ago, after the stroke. And so I go to PT two times a week. I go to speech two times a week. I travel I love to travel. I’m missing traveling. I’m, I just missed being at work. I know people love it. But you know.

    Bill 23:06
    It’s because of the people that you’re with. Not because of the work.

    Courtney 23:17
    I love to go to the beach. Long Island has like all the beaches, 15 minutes like, away. Now I’m doing crafting signing I take classes on Skillshare and YouTube, because I have to do anything about like, the time, and I’m really enjoying it.

    Courtney 23:42
    I think. If there’s not quarantine, I actually would not, do it. And now like so happy. I’m like, I’m creating like pieces that my friends love my family love. And I’m doing holiday cards. So I don’t know, I’m just really content now.

    Bill 24:07
    So you’re creative. You’re trying to find a way to express your creativity.

    Bill 24:14
    So when you’re a kid, and you have muscular dystrophy, do you know that you’re somehow a little different than other kids? Is there a point in time when you go hey hang on a second? I’m a bit different here.

    Bill 24:31
    And how does that play out in your life? What I’m trying to demonstrate to stroke survivors is that we, at some point in our lives, we get made aware that we are now different than that other person. And a lot of us in especially me at the beginning kind of struggle with why am I different? How am I different? Why did this happen to me? How does a little kid growing up with Muscular Dystrophy deal with the fact that They are different, because I know most of us just want to blend in.

    Courtney 25:06
    So I remember. So till middle school, I was walking, like, full time. And I can do like, pretty much everything in elementary school, but I had an aide and braces. So I was very sick, like insecure about my braces and the aid because people like, we’re not bully me, but they were there, they were like, staring in the grocery store, like a mall like why are they looking at me, I’m like a normal, you know, kid in the grocery store.

    Courtney 25:52
    Until I think I was just like, I had so many doctors and braces, um, but I didn’t know that it was progressive until Middle School think that middle school was so large that I didn’t have the capability of, you know, walking and not getting sick every day because my muscles were tired.

    Courtney 26:27
    And I was just so embarrassed about the scooter. And, you know, every, obviously kids stared at me. And I think I was embarrassed and insecure for a long time until I moved to a new high school that was so small. And the kids really loved me, and they’re my actually best friends now. So I think until high school, that was just a really tough time to blend in with braces and scooters.

    Bill 27:13
    So when the school was really large, it’s very easy to kind of, not create strong relationships with people, but when it’s small and intimate, you have an opportunity to create really strong relationships.

    Courtney 27:28
    Yeah. Until now, they’re my best friends. And I’m lucky that my mom moved. And my mom, you know, the last school for high school was four floors, and an elevator. And I did freshman school, freshman year of that school, in high school, and I was just, like, so tired.

    Courtney 28:01
    I had no friends. I was just tired of that life. And my mom sister had a house 30 minutes from me. And my cousin went to North Shore. And you know, they had a really small school that like, I graduated with 125. And so it was so small, and one level no elevator. So I was really independent with that school.

    Connecting with someone with a disability


    Bill 28:43
    Interesting. You’re independent. So what do you think it is with kids that are the same age as you but in school who don’t have a disability who doesn’t understand what disability is like? What do you think is the issue with them connecting to somebody and making friends with somebody that has a disability? I’m thinking back to my days when I was a kid, I never knew anybody that had a disability.

    Courtney 29:12
    Yeah, that’s what I was gonna say. Representation because I really had no one to really share this Muscular Dystrophy experience because I was around so much normal people. And we didn’t get educated about disabilities. Like they had like the autism like, room and we know like autism, but not really Muscular Dystrophy or physical disabilities.

    Bill 29:55
    So Autism is more of something that is Visible like muscular dystrophy. But if you speak to somebody, you might become aware that they have a different way of communicating with autism. But the fact that you are in a school where nobody knows anyone else with a disability, perhaps those other children don’t know how to approach you how to behave. They don’t know how to be friends with somebody who is in a wheelchair.

    Courtney 30:31
    Yeah, I think now, social media has a very component of representation, because I was actually speaking with my girlfriend that has muscular dystrophy. In Michigan, she’s 29. And we don’t really have that representation until Facebook and groups and just Instagram and tik tok.

    Courtney 31:04
    I mean, it’s all over now. And I’m so happy about it. But I think me, you know, me and my friend we’re talking. Like we didn’t even know about social security or disability checks until we’re like, 25. You know, so we had. So minimal education about having a disease, when you’re an adult, and going to college.

    Bill 31:39
    So even you who had muscular dystrophy, you didn’t really know a lot about it.

    Courtney 31:45
    No, until three years ago, because my best friend, her mom is a disability lawyer, and she was like, you didn’t know about Medicaid or getting aid for free. My mom was spending her money to get aid, we didn’t even know that New York pays for aids until I was 25.

    Bill 32:09
    That’s nuts. That does remind me of stroke survivors. Stroke survivors have a stroke, and they don’t know why it happened, what kind of stroke they had, what it affected, how to recover, what to eat, what not to eat, whether they should drink alcohol, or not drink alcohol.

    Bill 32:27
    And it’s so strange, isn’t it that we have this thing, and we don’t know anything about it. And we hoping that somebody else will tell us about it. But they don’t, no one really wakes up one day and says, these are all the things you need to know about stroke. Unless you get curious. You’re not going to become educated about it.

    Courtney 32:46
    Yeah, I was like, after the stroke, really no one told me like after the stroke, like what’s gonna happen. So I literally googled it and YouTubed it. And I taught myself and my mom and the groups on Facebook.

    Bill 33:05
    Isn’t it amazing, we can do that. Now I remember my first blood vessel bleed, the first bleed in my brain happened in 2012. And that’s not that long ago. But even then there was no information. And it was so difficult to get help. And I had to do it all myself. But now, I’m finding people have had a stroke maybe a month or two or three ago.

    Intro 33:47
    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 34:16
    If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.

    Intro 34:35
    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.

    Courtney 34:55
    Absolutely just knowing that you know you can talk to us million, not a million but you know, thousands of people. And that I thought I was the youngest that had a stroke. And I was like, oh, okay, I’m not the youngest, like, I was just so I was just like, so surprised though. I was so young. And I thought, you know, old people have a stroke, not young people.

    Bill 35:24
    Yeah, it’s crazy. People have stroke at every age, and we don’t hear about it. We don’t know about it. It’s not spoken about. But it’s good that we can find people. But it’s terrible shit that people have had a strike a young age or any age. But it’s kind of good that we can find them if they have had one so that we can relate to somebody, right?

    Courtney 35:47
    Yep, absolutely.

    Bill 35:51
    It’s a best time I know this sounds weird, right. But it’s probably the best time if you’re going to have a stroke, it’s the best time to have one because the Help is better than ever. The connection to other communities around the world is better than ever.

    Bill 36:11
    So many positives. But it’s a crap way to find people. I mean, because of stroke or because of muscular dystrophy. It’s so bizzare yeah, I remember speaking to a lot of other stroke survivors on my podcast, that have had a stroke many, many years ago, say, you know, 10, or 20 years ago, and even 30 years ago, where for maybe a decade, they didn’t meet anyone else who had a stroke or didn’t speak to anyone else about their stroke.

    Bill 36:44
    It just something that happened. And that was it, they never spoke about it. Because to find the group was a lot harder than it used to be. So imagine having 10 years of this stuff happened to you and build up in you and you haven’t got anyone to talk with about .

    Courtney 37:02
    They don’t really give you a life coach. Like after the stroke. Like you’re all doing it on yourself like bye, see ya. Like thank God my mom is a nurse, thank God, you know, because I was just so uneducated about strokes.

    Reasons to reach out after a stroke


    Bill 37:30
    It’s one of the reasons why I also coach stroke survivors. It’s exactly what you said. We need people that are going to help us get over the line in those really tough times when we don’t know how to navigate it. And it’s difficult. It was very difficult for me, but I’m very curious kind of guy.

    Bill 37:49
    So I reached out to people everywhere all over the place. But and then I started the podcast to meet other stroke survivors. That’s why I started it. But what I realized was people needed guidance. Questions answered. And they needed their concerns to be heard.

    Bill 38:08
    And that’s kind of what my coaching helps people do. It helps people feel better at a time when things are difficult. And also gives them ideas about where they can start looking for solutions. Because if you don’t know where to start looking for solutions that could be out there, but you might not know how to get there.

    Courtney 38:29
    Lost for example, I was in Tampa, I had homecare for six months, I had a really good speech pathologists loved her. But you know, after I was like, okay, like, I’m doing well, but you know, like, I’m not like hundred percent. So I called every place in Tampa they were like, Oh, no, we can’t see you. I was like, why? They’re like, well, you’re kind of good.

    Courtney 39:08
    Like, they don’t really, like have the techniques to teach you like, okay, I was just so surprised. So I moved back to New York, and I called the speech pathologist, and I was like, I’ll just go back. And she was like, yeah, I don’t know why they didn’t teach you in Tampa like, you can be here forever. I was like, thank you.

    Bill 39:42
    So they kind of maybe didn’t have the resources to support somebody like you who is kind of good. Like, that’s so weird. You’re so well done. Courtney you’re kind of good.

    Courtney 39:57
    Yeah, it’s just so weird. I was like, ok. But you know, I had to learn it myself. And that’s like, you know, not easy when you’re 22 in college, and I had a plan, you know, I was gonna go to grad school and, you know, have my doctorate and therapy, and I was just so dumbfounded that 22 that I had a stroke.

    Bill 40:24
    I don’t blame you at all. Courtney. Tell me about the times that you’ve spent in hospital, your muscular dystrophy. Does that make it so that you’re at the hospital with doctors all the time?

    Courtney 40:45
    Yeah. So after the stroke, my mom was literally like, they’re just not dumbfounded. But like, they kind of put me on muscular dystrophy, not the stroke. And they’re like, Oh, you know, your arm’s not going really, you know, come back. I was like, wow, that’s like, a negative comment, like, 22 college girl, it was just very upsetting that they saw me as a muscular dystrophy, not a stroke survivor.

    Bill 41:29
    Right. So they had always seen you as Courtney, who always had muscular dystrophy. She’s had stroke, and they didn’t adjust the way that they approached your health and well being?

    Courtney 41:44
    Absolutely.

    Bill 41:49
    So do you still have regular appointments now? Extra appointments for both Muscular Dystrophy and stroke?

    Courtney 41:57
    Yes, I do. So unfortunately, in July, I had another clot, a blood clot in my kidney. And I went to the hospital for seven days, and they don’t know why the clot was there. I’m on Coumadin. And it was honestly like a scary situation. It was a pandemic COVID I’m in the hospital. I’m just freaked out like, Oh my god, I have COVID blah, blah, blah. And they’re like, Yeah, I don’t really know why that happen. Like, probably 10 doctors? they don’t know.

    Bill 42:53
    I’m gonna read a couple of the posts that you’ve got on your Instagram first one I’m going to read is you’ve survived 100% of your bad days. What’s that about for you?

    Courtney 43:10
    I think what I told you, just riding the waves and getting out and you know, you don’t know how much you have in life. And that stroke taught me like, you don’t even know if you’re even gonna wake up tomorrow. So after the hospital or the stroke Yes, I was angry and frustrated and I have a muscular dystrophy. That’s so rare that no one knows about. But I think I’m not gonna be sad and angry because I’m wasting a day.

    Bill 44:00
    So is a bad day still a good day? Can a bad day be a good day?

    Courtney 44:07
    Yep, I had a bad day like two weeks ago, and I cried to my therapist. My best friend came over and I was laughing. And I’m like, I just thank God. I was like, I’m just so blessed that my best friend called me. I had a bad day and I’m laughing two hours later of the crying session.

    Bill 44:36
    That’s so cool. That a bad day can still be a good day. At some point, we can turn that around, even if it’s just for a laugh, or a friend or something.

    Courtney 44:48
    Yeah, absolutely. And I think that lesson taught me too. I have bad days, but I’m not gonna weep for my bad days, because I don’t know what happened and no one knows what happened. I can’t change it.

    Bill 45:15
    Can you have a good days that become bad days? And then does that muck you up? Or is that just one of those waves? I’m going to wait until the good comes back into my life.

    Courtney 45:32
    So me yeah, waves, I’m not like a, I have a bad day forever. I have a bad moment for probably like two hours or three, whatever it should be. But I can’t, like keep up with madness and frustration and blaming myself. Because I party and in college and I had a stroke. It, just, it’s a risk for my anxiety and my body to have my so much. And it’s just like, I have to just stay calm. And it’s hard. But you know, you said it. I survived the hardest days.

    You don’t grow when you’re comfortable

    Bill 46:30
    Yeah, you said it’s hard. But you also say in another one of your posts, you said, you don’t grow when you’re comfortable?

    Courtney 46:39
    Yeah. I mean, the stroke taught me, I was just I think I didn’t see myself as a disability advocate. Because I was just so around normal people, and I just forgot about my disability. And I think I was just Oh, that’s good. Like, just don’t, you know, don’t think about it, like the future. But now I’m just so advocacy. And I talk about and I FaceTime, my, you know, friends that had a stroke, and I’m just so like, amped up to just, like, have this conversation and just change one person or just the thought.

    Bill 47:32
    You know, some people who have a stroke think that it’s not growth, they think I had a stroke, I’m experiencing a disability, I’m in a wheelchair, that’s not growth. That’s going backwards. So what is growth during that time, because there’s this idea that growth, look has to look a certain way, like, how do you grow? What is the growth that happens?

    Courtney 48:00
    So moving back to New York, because I had to, after the stroke was a really hard lesson, because I obviously love my college and my friends, and, you know, in Tampa, but and I thought, and it did, you know, New York is a blessing because they have Medicaid, and they pay my aides and, you know, we’re having the not a normal life.

    Courtney 48:37
    But, yeah, and moving was quite of a challenge, because I had to not forget about what happened in Tampa. But I had to love myself to start a new one here. And I think that took several months, I think the summer that, okay, you had the stroke, and you move, this is your home, and you have to get acustomed, you know, to go to a new doctor and explained the whole thing, you know, like, I think, to love myself and not blame myself for that stroke up now. It’s a good lesson.

    Bill 49:30
    So there’s growth there because instead of blaming yourself, to finding a way to just accept what happened, kind of, and then allow yourself to just love yourself. I mean, that’s growth. Is that weird? Have you not loved yourself until now?

    Courtney 49:49
    Yeah, because I, I think what, you know, I had caregivers in elementary and middle school and high school and college and I was just codependent for so long. And I was just so codependent for my friends in Tampa. And I had to move home and just create a new, you know, no personality, but I had to, you know, talk to my high school friends and, you know, tell them the story and what happened and I’m okay, just, you know, remember, like, I had a stroke.

    Courtney 50:31
    But yeah, it was hard. But now I’m just so thankful that I have my high school friends that love me so much and have such an amazing support system here. And I accepted it and I think, to accept that, you know, you have a disability, and you had a stroke. And it’s okay, you know, to cry because I miss my arm, like I you know,I have daily crying because I miss texting, you know, but when I, cry and, and then the next day, I’m so happy and I don’t think about my arm. I’m just okay. I’m okay. Like I have my family. My friends, my dog, a roof over my head food. You know? I’m okay.

    Medical Marijuana helps with Muscular Dystrophy And Stroke


    Bill 51:35
    You have a lot. Yeah. Now, in couple of the photos on Instagram on your Instagram page. You are doing the Snoop Doggy Dog, got a joint in your mouth. Smoking weed. And your comment says under the influence above the ignorance. Tell me about weed and how you use it and how it’s helped you?

    Courtney 52:04
    Yeah. So, freshman year of college before the show, I had a stomach issue. Basically, I was so skinny that my stomach were not moving. And I would throw up every hour. And it was a very, very hard to accept that. And I had food I forgot the thing, the feeding tube.

    Courtney 52:44
    And I was just so embarassed, like, Oh my god, I was actually 20. And my mom is a she loves organic food. She’s like, you know, whole foods nut. And the formula then was not organic, and I hated it. And my brother was a stoner in, high school, and he hated it. And he was like, just smoke.

    Courtney 53:19
    You’ll get the munchies and so I’m like, oh my God. Oh, so my mom’s like, okay, I’ll buy her a vaporizer because we didn’t have like the carts you know now. Yeah. So I was just like, okay, fine, like, all right, that vaporizer was my best friend. Because I didn’t throw up. I tolerated yogurt. The feeding tube came out. I was like, fuck it.

    Courtney 53:49
    Me and my mom went to my nutritionist and he was like, just instapot, the soup, you know, instapot everything, just like blended blah, blah, blah. And I smoked weed for like, probably like two months. And I was well, I literally went to the doctor. And he was like, how, how?

    Courtney 54:17
    I was like medical marijuana. And he was like, Are you kidding? I was like, No, I’m, honestly I’m eating a smokin steak. And he’s like, a steak. And he was just like, so dumbfounded. And I’m like, yeah, and then I was like, I love weed. And I really didn’t have like the education of medical marijuana because there was like, my brothers, you know, buy and like, you know, whatever.

    Courtney 54:50
    But when I got better and moved to Tampa, I was like, Oh my god, this magical you know, leaf helped me to move to Tampa like tolerate steak and you know everything I was just so fascinated that like I was hungry every day because in muscular dystrophy we’re thin because we don’t really tolerate like, whole meals.

    Courtney 55:20
    I was eating like three pizzas like three full-size slices like anything and I was like it was like a miracle and after the stroke, it was just I ate edibles for a while because my mom didn’t want me to smoke for a while and the edibles I take them daily every day. And it really it actually works for anxiousness. But why I really love it is it relaxes my muscles.

    Bill 56:05
    Wow there are so many benefits so does it make you stoned the edibles?

    Courtney 56:11
    Oh yeah, I just watch TV, and movies. Yeah, we watched the Grinch last night.

    Bill 56:19
    Okay, cool. So the edibles make you stoned because they’re basically just an edible version of the extract from the marijuana leaf. But medical marijuana doesn’t make you stoned.

    Courtney 56:32
    No, it does.

    Bill 56:34
    It does too.

    Courtney 56:35
    I just you have to get a card and then in New York, you have to get a card. It’s like $200 and then you have to go to the dispensary. But like the dispensary really pricey. And my brother has a friend in Colorado so he just really hooks me up. And really it just the benefit of smoking. I mean and edibles. I love edibles. I’m like a fan of edibles. Anytime, any type. I love edibles. I went to California last year. Oh my god, I was like, in a candy store. It was insane.

    Bill 57:24
    And so many benefits. I’ve had weed plenty of times before the stroke. Not so much after the stroke. But I did like the way that it does. You know chill me out put me in a really cool wiped out zone, the munchies. I never really needed it to weight or anything but the munchies was something fun to experience, you know, just going nuts and eating everything and anything.

    Bill 57:51
    But I can see how it’s really beneficial for people who have appetite issues, and how much and how much a simple thing like having an edible can change somebody’s life from being really unwell because they can’t eat because of muscular dystrophy and really needs improvement.

    Courtney 58:14
    Yeah. Oh my god, damn, like 20 pounds. My batteries were like, you’ve been at 60 for 10 years. And now you’re, like 75 pounds. Like how? Like, wait, I just thought we’d go. Is it?

    Bill 58:34
    Isn’t it sad that so many people have missed out the opportunity to experience the benefits of that because of some crazy rules around what are what it is?

    Courtney 58:45
    Oh, and you know, I said that the judgement so like now I’m not gonna, I’m not gonna smoke. Like, they’ll judge me. Okay, people drink all the time. All the time. So I just say that. I’m like, yeah, It’s not gonna be judged.

    Bill 59:08
    So 75 pounds is really like those still, isn’t it?

    Courtney 59:13
    Yeah, and I’m still adding pounds, but it’s so hard. And my girlfriend Maria that has muscular dystrophy. She said the same thing. She was like, so thin and she just, like, got a cart of the pen. And she’s been smoking for probably like five years. And she’s got, like, gained weight and has munchies every day.

    Bill 59:45
    That’s fascinating. I just love hearing stories like that where, you know, before people would judge somebody having a joint or a smoke, and they have no idea what they’re really judging and why people do what they do or not and now here we go. There’s so much again, conversation about the benefits of something that’s been so badly treated by governments all around the planet, making it illegal putting people in jail for destroying people’s lives.

    Bill 1:00:17
    And the benefits are so huge and the people who are interfering in our lives with making something illegal, have never had muscular dystrophy, they’ve never had a stroke, they’ve never had issues. And now, they’re the ones making decisions on whether somebody that’s got a condition should or shouldn’t use something.

    Courtney 1:00:46
    Right? And the prices are just jacked up, like, thank God, my mom has the salary to pay, like 85 of like a gram for a pen. But like, there’s poor people that can’t get $90 to get a pen. That’s wild.

    Bill 1:01:11
    Yeah.

    Courtney 1:01:14
    Like $1 like, that’s just it doesn’t make sense.

    Bill 1:01:20
    So people like that would get their own supply through regular so in California.

    Courtney 1:01:31
    Right, and California and Colorado.

    Bill 1:01:35
    So the other states haven’t made it legal yet. So if you live in California and Colorado, it doesn’t cost $90?

    Courtney 1:01:44
    No, oh my god, When I saw that while I went to California, LA and I went to the dispensary, the first one, and they’re like, Okay, this is like, gonna be like 100 bucks. I had like, four pansy edibles. I was like, Oh, that’s like $400. Yeah. And it’s crazy. Because like here, they only sell the oils not the bud in the like dispensary. And that’s like, not there. You know, I don’t know why governments, obviously not smoke, you know, place the rules.

    Bill 1:02:29
    I think it’s a flawed system. But anyhow, look, it’s a decent system. It works most of the time. I don’t know. It’s a big conversation. It’s not for me to have I’m not really that interested in that. But what I’m interested in is just things that are helpful and beneficial, should be made available to people.

    Bill 1:02:48
    And that’s it. And it shouldn’t be up to me who’s never had a stroke before to decide whether you who has had a stroke or has had muscular dystrophy. It’s not. I shouldn’t be deciding on what you should or shouldn’t do. Like, in that situation. I think it’s crazy. But I kind of see that. It may be started with supposedly doing the right thing and helping people and I don’t know what but it seems like the decision to ban marijuana going back however many years ago, 100 years ago, was maybe good for the time, and it’s definitely flawed now. It’s not necessary.

    Courtney 1:03:31
    And we have like the study and the research I mean, it helps so much people.

    Bill 1:03:41
    Courtney, I’ve had such a pleasure chatting and, getting to know you. It’s been such fun. Thank you so much for being on the podcast. I really appreciate it. If people want to get in touch with you. Where would be the best place to find you.

    Courtney 1:03:56
    Actually, my Instagram is easiest place. It’s @courtneygabrus.

    Bill 1:04:20
    It’s all good. I’m gonna post the link anyway, I just thought I’d give you a bit of a hard time by letting you spell it out. Don’t stress our part, I’ll post the link. I’m glad to have found you on. I’m glad to have you on the podcast. You’re an amazing person. You’re a fascinating person and just thank you and keep doing what you’re doing and I love what you’re doing. And that’s why I needed to share your story.

    Courtney 1:05:05
    Thank you and I had so much fun, I can’t believe it’s up.

    Intro 1:05:14
    Discover how to heal your brain after stroke go to recoveryafterstroke.com importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.

    Intro 1:05:41
    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 1:05:58
    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 1:06:19
    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 1:06:32
    If you are experiencing a health emergency or things 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 medical information changes constantly. While we aim to provide current quality information in our content.

    Intro 1:06:48
    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 Muscular Dystrophy And Stroke – Courtney Gabrus appeared first on Recovery After Stroke.

    1 hr 8 min

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