Recovery After Stroke

Recovery After Stroke

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Recovery After Stroke episodes

  • 10 Years of Stroke Recovery – Stephanie Ho

    After experiencing a ruptured AVM in her early 20’s Stephanie Ho has now been on the stroke recovery journey for more than 10 years. In that time she has had to overcome a lot of obstacles including readjusting with her new self and dealing with lost friendships and discovering new ways to be herself.

    Socials: www.instagram.com/stephho88/

    Highlights:

    01:07 Introduction

    04:22 The waking stroke
    11:23 Stephanie’s Deficits
    19:11 Dealing with stroke recovery and isolation
    26:45 Being a young stroke survivor
    42:28 Reinventing yourself after a stroke
    50:37 Lack of emotional counseling
    01:04:36 The more we do it the easier it gets

    Transcription:

    Stephanie Ho 0:00

    I particularly love the word that you use, which is reinventing yourself. I think that’s very true. And it could be the single difference between how well you recover. And I don’t just mean physically I mean, mentally, being able to face yourself and look yourself in the mirror and realize that the person that you once were the one that everyone still identifies you with, because you still have the same face needs to be reinvented.

    Stephanie Ho 0:39

    When you go through a life-altering event, you are shaken up to the core and it’s only natural for you to kind of shift everything, your values, what you believe in, what you care about out the window, and start rebuilding from scratch.

    Intro 1:01

    This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.

    Introduction


    Bill 1:07
    Bill from recoveryafterstroke.com, this is Episode 102 and my guest today is 10-year stroke survivor Stephanie Ho. Stephanie was in her early 20s when an AVM in her brain bled out. Stephanie has a very lovely way of approaching stroke recovery that I am certain you’ll get a lot from.

    Bill 1:27

    And I believe that you will love this episode. Now when you get to the end of the episode, whether you are watching on YouTube or listening on your favorite podcast app, please do me a favor and share the episode with other groups you hang out in.

    Bill 1:41

    This will help someone who is going through a tough time at the moment feel better about the journey that they are on, and perhaps give them a sense that there’s light at the end of the tunnel. Also, if you feel that this podcast is a five-star podcast because it is I would love it if you spent a little time giving it a thumbs up on YouTube.

    Bill 2:01

    Or a five-star review. on your favorite podcast app, you’ll be making me smile from ear to ear. also recently, I’ve put everything that I learned about what is important in stroke recovery into a course called the 10 Steps to Brain Health for Stroke Survivors, and module one is now available at recoveryafterstroke.com.

    Bill 2:22

    This is a course that is included as part of my recovery after stroke coaching program that you get automatically when you become a member of the recovery after stroke podcast. Now this course will help you overcome fatigue, reduce anxiety, and support your memory amongst other things.

    Bill 2:42

    This 10-step program has been created to complement any medical interventions and works in conjunction with other physical therapies that you are undergoing. So if you are a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety.

    Bill 2:57

    This is the cause for you If you feel like there is not enough support after you leave the hospital and you are afraid that your recovery will go backward, then this is where I can help. While you are participating in this course, I will coach you and help you gain clarity on where you are currently in your recovery journey.

    Bill 3:18

    I will help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to help you overcome what’s stopping you from getting there. Now right now, for anyone interested in learning what recovery, after stroke coaching is about you, get a seven-day free trial to decide if it’s the right fit for you.

    Bill 3:37

    The price though will be increasing on July one by more than double. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching if you are listening online, and now it’s on with the show. Stephanie Ho, welcome to the podcast.

    Stephanie Ho 3:57

    Thank you for having me.

    Bill 3:59

    Yeah, thanks for being here. I love that we connected a little while ago, we had an amazing chat offline, probably about a month ago now. And some of the things that we spoke about, I felt like we should have had a podcast episode about and I’m glad we’re getting together to do that. Now, just before we get started, can you tell me a little bit about what happened to you?

    The waking stroke

    Stephanie Ho 4:22

    Sure. And thank you for having me again, Bill. So when it all started, my stroke happened 10 years ago. I was very, very young. I was still 22 I had just finished uni. work was like, feeling pretty, ready to take on the world. And yeah, after a few months of full-time work, one day I just woke up feeling fine.

    Stephanie Ho 5:00

    I remember hearing my phone ring, and I got up and I checked a message. And I remember thinking I must be so out of it. Or maybe I had too many drinks the night before because I couldn’t decipher the words or the letters in that message. And yeah, I think what was happening was my hemorrhage my stroke was, at this time, already bleeding out.

    Stephanie Ho 5:32

    So my stroke was the Broca’s area in the language center of my brain. And then yeah, I remember going to the bathroom next. And luckily my mom was there. She asked me how my night was before and at this point, this is when I freaked out because I came out to reply with just a jumble like just blah blah of a no sound.

    Stephanie Ho 6:11

    And I freaked out, I walked downstairs, and my brother likely was still at home and he opened the door. And I’m just trying to muster some words, which is not working out. And he thinks I’m still drunk. at this point I should mention that my brother is a very, very intelligent guy, very, very smart, and goes to show that you know, even he didn’t know what was going on.

    Stephanie Ho 6:44

    Maybe lack of public awareness or educational strokes, but I typed can’t wait. So I knew that something was wrong. But because there are no pain receptors in the brain I couldn’t feel the pain. So I typed can’t wait. And he’s like, can’t wait for what? And that at this point, my right-hand side collapsed.

    Stephanie Ho 7:10

    And then he got very worried. And he googled a few things and then a stroke came up. And then yeah, hence began the long journey from someone in the hospital where I got, I guess assessed moved to Prince of Wales. I stayed there for three months. Oh, no, like a month before my surgery before then going into inpatient for rehab. My stroke was quite severe, which I learned much later.

    Stephanie Ho 7:50

    It was kind of like a golf ball-sized hole in my head and that rendered me unable to speak at all I couldn’t read, write or I could still understand so that was a huge blessing in disguise. I walk or talk or use my right arm I was partially blind for a while and luckily that came back.

    Stephanie Ho 8:21

    But yeah, I often talk about this part and I it’s almost surreal it’s almost like I’m giving a synopsis of a movie because I don’t remember much of it. I certainly wasn’t in a space where I could feel worried or concerned I was just so spaced out.

    Stephanie Ho 8:45

    So I often bring back attention to the recovery, which I think is more important, at least for the person going through the stroke or the recovery process because that’s when your mind kind of like comes back online. And that’s when you do need their support. Physically, you know, mentally, spiritually all that.

    Bill 9:10

    I love what you said there because I was the same, I was pretty spaced out. And I love the similarity. Well, I don’t love the similarity. But the similarity is that mine was a golf ball-sized clot in my head as well. And it was there for a long time because I didn’t have surgery for quite several years.

    Bill 9:28

    And it started to decrease in size. And as it decreased in size, more and more of the things that I’d lost came back on. And I was able to talk again, write an email again, drive again, work again. It took some time, but I did the same thing reflecting on it.

    Bill 9:46

    It was somebody else’s story that I was telling. I wasn’t telling my own story because I was out of it. And I was spaced out and I didn’t have a concern in the world. There was no worry. Everyone else around me was freaking out and losing their minds but I was kind of chill and now that you’re 10 years down the track, do you find that Is there any drama talking about it any sort of issue do you have any does it bring up anything?

    Stephanie Ho 10:18

    Um, not is maybe the short answer. I’m certainly still very passionate about what’s happened you know, it’s been 10 years but I don’t think there’s been one day but I don’t think remotely about that. Not necessarily about the day itself, but rather the whole saga you know, that one fateful day determined, you know, the rest of my life it’s changed me as a person.

    Stephanie Ho 10:56

    It’s changed how I work, what I prioritize, what I’ve planned for just everything. So it’s not painful, it doesn’t run, you know, bring up certain negative feelings but it’s still a very big part of my life every day and I think also people, you know my loved ones around me as well.

    Stephanie’s Deficits

    Bill 11:23

    Yeah, and that’s because you have some deficits Is that right?

    Stephanie Ho 11:26

    Yeah, that’s right so I had a pretty good night’s sleep so hopefully I’m able to speak fairly clearly today. But you know what, I’m tired I slur my words. Like my brains not quite connecting as well. Which is frustrating. If I’m tired, I also can’t spell so well. And never was very good at spelling and then I have like spasticity in certain areas of my right hand, and my legs as well, when I’m cold in particular, the circulation doesn’t run as well.

    Stephanie Ho 12:10

    And then, you know things kind of seize up. I often joke to my family about my right-hand side, especially because My hand is almost like a sea creature that likes to just close up when it senses danger or something that it doesn’t quite like. So that’s the I don’t know, Primal side of evolution maybe.

    Bill 12:37

    So I like what you’re saying there, my left side. And again, you wouldn’t see me and people wouldn’t know that I had a stroke unless they knew about my podcast and heard me speak. But my deficits are not visible.

    Bill 12:51

    But there are proprioception issues. There’s numbness, there’s temperature issues. And when I get tired, my left side gets wonky. And my balance is a little bit off. But I relate to what you’re saying. And I reckon there’d be many people listening that relate to what you just said about how your hand kind of has a mind of its own. It does its own thing.

    Bill 13:16

    I don’t like my hand being touched by anybody. Especially when they do it gently.

    Stephanie Ho 13:23

    Oh, is it overstimulating? Is that why you don’t like it?

    Bill 13:27

    Yeah, when they do it rough and they don’t take care. It’s no problem. But when they try to be gentle. Like my wife tries to be gentle. That drives my senses nuts.

    Stephanie Ho 13:39

    Yeah, right.

    Bill 13:40

    I might act up and she’s trying to be nice and friendly and loving. And I’m being a bit nasty, but it’s not me. It’s that hand. That hand makes me do that.

    Stephanie Ho 13:52

    Yeah, I know exactly. What do you mean, It’s almost like this because it’s so gentle you know, your brain has enough time to receive all the messages from the hair, the tiny hairs in your arm or, wherever it’s almost more distressing. So, yeah, when I go to the dentist, for example, when he’s drilling on my right-hand side, it doesn’t hurt at all. Whereas like, tickles that is torture to me.

    Bill 14:29

    Right? It’s like that anticipation of being tickled. You know, when people are gonna get tickled you’re gonna go tickle somebody, and then they get all this strange feeling. They start laughing and they start freaking out and they haven’t ever been tickled yet and then you tickle them. And it gets worse.

    Stephanie Ho 14:46

    Yeah, it’s a really weird thing. It is. I, you know, we don’t know how the brain truly works and you know, all the things you take for granted like pain and, and pressure, things like that it does all go out the window and is all very unique to everyone. So yeah, like another weird thing after the stroke when I sneeze every, like three times every time I sneeze it’s like three times and something happens when I scratch my nose and my thumb comes out the way that I’ve been trying to, you know, practice in ot exercises for years. So it’s really weird.

    Bill 15:45

    Seems like there’s been a bit of a muddled-up reconnection somewhere and things are firing and triggering in different in different ways.

    Stephanie Ho 15:54

    Yeah, I like to think that there’s a void space in my brain the size of a golf ball. And you know the fact that I’m able to talk to you and have this conversation is a miracle in itself because they tell me that there’s no language center anymore. So whatever way that my brain managed to hodgepodge these, like, connections I’m still very very thankful because it still works, or maybe not perfectly but I’m okay with sneezing three times.

    Bill 16:34

    Of course, except when you sneeze during Corona do people freak out? Oh my god, she’s sneezing.

    Stephanie Ho 16:43

    Oh, yes, Corona. Can you believe we’ve found ourselves in this time? It’s helpful that we’re able to have this conversation across borders because I’m in Sydney. you’re in Melbourne, right? But, you know, I was just, I was just contemplating certain things about this, you know wide-spread pandemic, which now has made it, you know, all these issues, a collective one, everyone’s going through the same thing roughly.

    Stephanie Ho 17:23

    And I can’t help but draw the parallels between, you know, people talking about anxiety and depression and trying to deal with uncertainty. These are all things that, you know, stroke survivors have to go through, and in isolation, there are no other poor people where you can just say, hey, I’m feeling or going through this.

    Stephanie Ho 17:50

    And how about you and having that camaraderie or support? It’s just really hard because, at least for me, I know that this goes for a lot of other people. When you go through a stroke, most people think about the more obvious physical science which is not able to walk or talk or do usual activities, but really, it’s the sense of self that you lose, and that of course makes you feel very isolated.

    Stephanie Ho 18:31

    So yeah, when you’re stuck at home because you can’t do anything else because you have severe chronic fatigue issues. Where you know, going up getting out of bed and and brushing your teeth and having a shower is not to you know, you’re like spent for the whole day. I think it’s just funny because I’m like, you know what, I know that there’s a whole pool of people who, yes, it’s hard but can deal with this. I think we’ve all gone through that before.

    Dealing with stroke recovery and isolation


    Bill 19:11
    I agree with you. I was asked very early on when isolation started, how I was coping, or what was happening to me. And I was like, well, I’ve been here before, I don’t have an isolation issue, per se. I’m not working again. And I know what that’s like. I’m not out and about again, I know what that’s like a limited amount of times where I can do stuff and for short amounts of time.

    Bill 19:37

    And all that stuff was familiar, but I noticed a slight difference in some other stroke survivors, I’m coaching somebody who is going through stroke recovery now and they are very early on in their stroke recovery. They don’t have that distance like you and I have where I have eight years post-stroke. Reflecting on it is an interesting reflection and you have 10 years.

    Bill 20:05

    And you’re seeing the similarities and it’s kind of familiar, but she’s going through isolation from both stroke and Coronavirus. So it kind of made it worse because she was keen to get out and about and get rehab and put an end to rehab. So when I was reflecting on my experience, that’s kind of what I noticed.

    Bill 20:30

    That’s the main difference is that some stroke survivors are going through isolation times too, so to speak. And we are going through that second phase of isolation at a distance reflecting on it and it’s saying that it’s familiar and we’re okay with it and we know that it will pass and things will get better. But people who are right in it now, they haven’t experienced that yet and they can’t reflect that It will pass.

    Stephanie Ho 20:55

    What a what a traumatic point. To imagine because oh my goodness did I miss thinking about during this period, you know, during my initial period of recovery, it was all about just trying to like to squeeze out every single bit of flick of movement or any recovery I could get and to think that she has another huge hurdle to, consider, like let alone stroke is bad enough in itself.

    Stephanie Ho 21:34

    But not being able to access the appropriate services and it’s all about, you know, they talk about the golden windows or like three months to a year to, etc. Not to say that I truly believe in that I think people will continue to recover as much as they, you know, put out but there is truth in that first initial window. Yeah, I wish the best of luck to her because that must be so hard.

    Bill 22:06

    Yeah, what’s good about it is that she’s getting better and things have started so she’s got back to rehabilitation, which was exciting for her. The other issue was minimizing the amount of carers that were coming to her home. She was somebody who was living on her own. So the carers that were coming in and helping her had to minimize all of that sort of stuff.

    Bill 22:30

    So then she started to get back on board, she started to get into rehab again, it started to lift her spirits, so she started to feel better. But of course, you know, there’s the roller coaster ride of emotions, all those things that stroke survivors go through that, we know about our community knows about the people outside of stroke don’t know about and I think it just made matters worse for her and what was good was that at that time, she was really smart to reach out and go help somewhere.

    Bill 23:02

    So, she reached out to me, we began a coaching conversation. And that made a difference it got out of some of those really difficult times where she needed to express herself and get stuff off her chest, and vent and do all those things. And she was able to do that. And then we’re able to have this conversation backward and forwards, even through email, or just messenger or something like that.

    Bill 23:25

    Just to spark a conversation. That’s about something other than focusing on what the problems are. So stroke survivors that are listening would benefit well by reaching out to somebody, whoever it is, and just saying, hey, let’s have a chat, or can we have a chat or whatever, you know.

    Stephanie Ho 23:46

    I’m so glad that she did. But the thing is, I feel to her for many reasons, but one of which is she’s not a part of this what happens you know, most people, when they are beginning the path of recovery, they go into the, the gym and they see other people, maybe similar, maybe dissimilar, but at least you have a bit of a gauge of what other people are going through. Now, as I mentioned before, it’s isolating itself, but to do it, sure you have clinicians and allied health people come in, but you don’t know how you’re going.

    Bill 24:36

    Yeah, you’re missing a lot of information and feedback from people. And continuity in your recovery is sort of all over the place. And I felt really good about knowing that I had continuity of my recovery. So I started a certain day. This is the plan. There’s all the things that we’re going to do and that’s going to continue for a certain amount of time, and that began for her. Everything was going great and then it stopped. So It did interfere with the continuity and the way that she felt about knowing where she was going because like, alright, am I going to get worse? What do I do now?

    Stephanie Ho 25:08

    Yeah, of course, and also just having a benchmark, you know, I had a lot of people around me we had, who had knee and hip replacements. And I’m the single, you know, young stroke patient. So that kind of puts me up as an outlier, which I don’t think it’s true. Yeah, it’s, um, there’s so much value in being able to befriend someone and being able to just ask questions and know that oh, wow, that’s normal. So that kind of puts my heart at ease and I can move on to the next stage or? Yeah, I think me being able to help her through that. It’s going to be invaluable.

    Bill 25:57

    It is invaluable. That’s What I was seeking when I was going through that, and I didn’t have enough people to connect with either because the things on the internet once are happening yet, you know, there were stroke survivor communities that I was getting involved in. I was 37. And those people that I was getting involved with lovely people, there’s no issues there.

    Bill 26:16

    But they were in their late 60s and it was just something that I couldn’t relate to, of course, we related to the stroke recovery side of it relate to anything else. So it didn’t create a great connection for me. But I did make one amazing friend who was another stroke survivor, who I bumped into because it was just before my surgery, and somehow I bumped into him and we got in touch.

    Being a young stroke survivor

    Bill 26:45

    And I asked him if I could speak with him before my surgery just because he was 10 years post-stroke then. And he was what I needed to see going into surgery I needed to see an example of what’s possible, you know, And then Andrew became one of my best mates and he became somebody that made a massive difference to me and inspired me to want to do the most I could do to get better you know? And I was lucky like that but very early on that isolation of being at home on my own, not having anyone to relate to was a big issue. I was 37 like, what’s that like for a 22-year-old?

    Stephanie Ho 27:29

    Yeah, you talking about it just reminds me oh, how crazy it is to navigate every single part of your life. And I really mean every single part because, you know, people think about, you know, work on relationships and friendships I’m talking about, well, I can’t get out of bed without help from my parents. I need to mediate between what kind of clothes I want. I can’t express myself because I quote, I can’t talk anymore.

    Stephanie Ho 28:07

    I don’t. It’s very unfair to compare because I think it’s just that everyone’s too unique, their strokes, and their personalities. But as a young stroke survivor, there’s the added layer of misconception or just lack of knowledge. You know, I think for example, if I can draw parallels between cancer and stroke, there’s a lot of public awareness of what cancer is, you know, cancer is a thing that affects a lot of people. There are multiple types of cancer people know this, but you have heatstroke and you think, Okay, I know it’s it’s a bad thing.

    Stephanie Ho 28:53

    I think it’s like a grandma and grandpa, you know, old older disease but People don’t even know what the science of his stroke is, let alone know what the recovery process would be. So I think it’s just crazy to think that once the doctors are so great at keeping us alive, and then they gave us some rehab for a few months, and they just bid you farewell and you know, best of luck to you.

    Stephanie Ho 29:27

    And I’m not saying I am trivializing it a bit, but essentially I think it won one way or another, you one day find yourself at home sitting there and just thinking what next I’m just freaking out. And people, you know, they’re very kind and very lovely to say things like well, you must be very, very brave or, you know, very inspirational to get through all this together.

    Stephanie Ho 30:00

    To be completely honest, what is more, truthful is I was so desperate I was just so desperate to get as much as I could back. I remember telling myself one day to put my feelings aside like all my emotions one day aside because I just needed that this is the golden period for me to just give everything I had and then I would I’ll allow myself to wallow and cry at the end just case like it doesn’t work out but yeah, I was just like, almost staring at down the barrel of a gun and going for a quiz that was my time.

    Stephanie Ho 30:47

    And then on top of that very so you had this like make or break mission of life. And then I have lovely friends. Of course. Trying to be as supportive as they could. And it was a whole mess of just me not caring about all this other stuff that we used to care about, you know, like fashion, or like going out to parties and things like that like I had a job to do. And then yeah, on top of that was the lack of communication expression.

    Stephanie Ho 31:29

    Just physically not being able to go to parties knowing that I couldn’t go to the beach because my balance was off balance. I couldn’t trust myself. I remember like going and going away once and it’s my fault, but I kind of went out into the ocean and everyone else was out there and I just thought, you know what, I’m gonna see how I go, and of course, I stumbled I got, you know myself a bit cut with oysters and yeah, I, I just knew that I had a new benchmark of things that I could achieve. And that was okay because I am now in you know, new goals for myself.

    Bill 32:19

    Yeah, we remember you reminded me of a couple of things that happened to me going back into the page and the water. And again, I mean, I even had my misconceptions about stroke recovery. Even when I was two or three or four years down the check. I thought everything just goes he’s gonna go back to normal.

    Bill 32:39

    You know, and it’s like, I’ve gone into the water I remember at the beach this one time and I couldn’t stand up because some waves were coming through and they were just knocking me over. And it was like, far out man. This is so difficult. Trying to walk into the sand is so difficult because the waves make me Visually lose my balance as well as physically lose my balance.

    Bill 33:05

    So that was strange to experience that. And then the other thing that was happening was the sand and the little shells and all those things that normally don’t bother my other leg. Oh, hurts my leg. And I’m going, Wow, this is way too painful. I’ve got to get in quickly and stop floating.

    Bill 33:25

    Because it hurts and I don’t have another way to get into the water. I’m gonna have to suck it up a little bit and get you know, experience some pain, right? Wow, that was interesting. And now when I go to the beach I wear you know, beach shoes or whatever they call them. Yeah, rubber soles. I can walk into the water with otherwise. It’s no fun.

    Stephanie Ho 33:47

    So that was the first time you went back to the beach?

    Bill 33:51

    First time back and it was just something that I never expected. And it reminds me of a time when I did when I was I danced again for the first time with my wife, you know, we went to this ball and we just did this little dance. And I was way out of my comfort zone. I couldn’t talk about two lifts fit. Oh my gosh, like, it was terrible

    Stephanie Ho 34:14

    for dancing the first place

    Bill 34:16

    I tried and then I was like, Well, no, no, I can’t do this. I’m not going to do this because I’m going to fall over. I don’t want to be embarrassed when I fall, but I don’t want to hurt myself and hit my head and that’s what made it concerning.

    Stephanie Ho 34:30

    Well, you caught the dancer beforehand,

    Bill 34:32

    not really. I wouldn’t call myself a dancer. But you know, just gonna have one of those things that men do that hold their wife and they just do this thing and they’re like, yeah, just get one of these things, you know? But those two experiences now that you’ve reminded me were almost traumatic to go and do again, but fun.

    Bill 34:55

    Once I got past all the trauma, but there were a little bit scary and then I remember we ran out to this amazing waterfall just near where we live a couple of hours drive away. And it’s a waterfall. And of course, at the bottom of the waterfall, there’s a big lake. And people go there and they climb down all these stairs and they get to the bottom of this, of this waterfall, and then they just swim in the lagoon and it’s amazing.

    Bill 35:19

    It’s beautiful. But the difference is, it’s. Freshwater, you don’t float like you do by water. Of course, I didn’t know that. So I decided it’s nice and flat and perfect for swimming. And I was gonna swim from the shore to underneath the waterfall. I was about halfway in and I became extremely immediately and I couldn’t swim.

    Bill 35:48

    And I was like, go under and I thought I was gonna drown. So I got I was with people and I grabbed on to the person who was next to me just to get my breath and I told them to help me get back out. But that whole misconception, my misconceptions about what recovery was. And imagine somebody who’s never had a stroke, like, the misconceptions that just through the roof, they’ve got no idea.

    Stephanie Ho 36:18

    Yeah, I think it’s, um, I would be more surprised if a person had a conception for me to prove wrong. I think stroke is so ill. I understood that people wouldn’t know where to start. And I often get cranky. When I hear or see, like, even in TV shows, American TV shows, they’ll often use stroke as the butt of the joke of like, you having a stroke or you know, are you talking something wrong or there though it doesn’t add to, to the public awareness at all, I think it’s fairly high because once you get to a point where you recover well enough to essentially reinsert yourself into normal society and then there’s no rulebook, there’s everything you used to do.

    Stephanie Ho 37:31

    And then you just have to kind of like I say, you know, don’t think about a 200 and see how far you go make sure you have someone around you but it is incredible to, to kind of go through the same thing used to do day in day out, it’s almost a muscle memory and then for you to experience it all again for the first time.

    Stephanie Ho 37:57

    And I think it’s it’s doing Wanting and scary, but it can be very rewarding and immigrating. If you give yourself that chance. I think there are a lot of people who have that this is a whole other topic but of self-identity where, you know, most people assume that there is a certain person where they derive value in what they do with their friends because they drive, you know, all these portfolios, external factors.

    Stephanie Ho 38:36

    And then when you find yourself in a hospital bed, unable to talk walk or even use your phone, you start you start becoming fairly, very keenly aware of the person you are. And I think it’s, it’s very daunting when you go back out into that world. And you have to rediscover yourself and that at that world and how that intermingles and whether that works still. And that can be very hard to swallow when you realize that you can’t quite do the same things you used to do.

    Bill 39:20

    And you’re discovering that while you’re recovering from a stroke, it’s not an easy thing to reinvent yourself, rediscover yourself, and then have to recover from stroke, overcome fatigue, all that kind of jazz. And it’s like, I’m going to talk about needing to dig deep and understand yourself and discover who you are.

    Bill 39:41

    And I think that’s a great point that you made is it’s also difficult for people who discover what they are after the show because sometimes they might discover that and he is you know, and I’m speaking from experience, who they are is sad. Somebody who’s just stupidly focusing on Work, Work Work many, many, many, many, many all this stuff.

    Bill 40:07

    And then when I don’t have any of that stuff, it’s like, alright, what the hell else do I have? Like, who am I? What do I do with my life? Other than work? Who do I connect with and talk to other than people who I go to work with? How boring is my life like, that’s kind of how I was thinking. And then I just went on a journey to find people that were amazing people to be with and had nothing to do with work, or all the other stuff that I used to do cars going out any of that stuff.

    Bill 40:35

    They only had to do with stuff that was related to actually helping me grow and have an example of how to be a work guy, but also layer in some other amazing things that I could be not just a work guy. I could be a caring person. I could be a volunteer, which I am. I could be a podcaster which I am And all these things started to come into my reality as in, you don’t have to just be the guy that goes to work and does that and nothing else. And then when that’s gone, you’re nobody.

    Stephanie Ho 41:11

    Yeah, that’s right. That’s right.

    Intro 41:16

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

    Intro 41:41

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

    Reinventing yourself after a stroke


    Stephanie Ho 42:28
    It’s really interesting how you say that I particularly love the word that you use, which is reinventing yourself. I think that’s very true. It could be the single difference between how well you recover and I don’t just mean physically I mean, mentally, being able to face yourself and look yourself in the mirror and realize that the person that you once was the one that everyone still identifies you with, because you still have the same face needs to be reinvented.

    Stephanie Ho 43:12

    And I think, not to be too corny but it is true. When you go through a life-altering event, you’re shaken up to the core and it’s only natural for you to kind of shift everything your values what you believe in what you care about out the window and start rebuilding from scratch. I think it’s a blessing and could be a curse, depending on how much you’re able to accept what’s happened.

    Stephanie Ho 43:50

    And I know that it’s all very different from other people because, for example, I had my stroke from AVM. So Arteriovenous Malformation which I was born with. So, it wasn’t lifestyle-driven. It wasn’t my fault per se. It was no one’s fault either, it’s a random tangle of veins, which one day ruptured. And from that, point, I think I was able to draw a line in the sand and realize that’s what that’s happened. And I can progress past that. But even before you asked me, whether talking about this, you know, did conjure up maybe feelings are not. I think that helps, you know, going through that grieving process grieving the past self of the person you once were whereas some people yeah, it’s not as easy and I think.

    Bill 44:57

    Yeah, and I think mindset comes into it. And I know people talk about mindset a lot. But there’s, you know, the work from Carol Dweck, she talks about the fixed mindset and the growth mindset. And if you’re going through stroke, and I’m talking to people who are listening and watching now if you’re going through stroke, and you don’t like who you are after stroke, as in the thinking back, and you’re going, I did this, and I did that. And that’s all I ever did. And now I can’t do that. So who the heck am I? If you’re gonna try and get back to who you were, you’re going back to the person you were before you had a stroke.

    Stephanie Ho 45:41

    That’s a good point and we know how that ended up.

    Bill 45:43

    Yeah, right. You maybe don’t want to go there exactly you know. And if you remain fixed in that previous mindset, you’re going to struggle and you’re going to suffer. The pain that it takes to go back to something that you can’t get back. Once you step in a river and then you step out of that river. If you step back in that river, again, that river has changed, it may be in the same place and look the same.

    Bill 46:08

    But you’ve done something and you disturb the rocks in that river, and they’ve gone elsewhere. And slowly the banks are eroding, and the river is widening or shortening in some places or becoming more narrow. That’s how we are when things happen and we change, that change has occurred. And now we have to find a way to evolve with the changes that are occurring. And that’s where the growth mindset comes into it and what does a growth mindset mean?

    Bill 46:37

    I’m not going to give you a definition, but from my perspective, it’s just being able to accept that things are going to change, allow them to change, and see what I gained from that change. If I gained something, even if it’s knowledge, that I’m shit at change, that’s still good because I learned at the moment, I’m not good at change and soon If I allow more change to occur, I might get better at it.

    Stephanie Ho 47:03

    Yeah, absolutely. I think it’s, um, it’s so real internal Invisible war against yourself. You know, I think our brains are, of course, hardwired to be quite effective in being lazy, you know, that’s why we have motor muscle memory, but when you like completely just hide and nothing else is what you used to know or believe you kind of are forced to survive by going with the change otherwise.

    Stephanie Ho 47:49

    To me, the opposite is not even an option because I wanted to be happy I wanted to be fulfilled and be a different version of what I used to imagine myself to be living but you know as cheesy as it can be I am happier and more content and at peace with myself but only through having gone through the hard work of you know grieving the whole five stages of grieving is a real thing like the denial the anger all that in a certain wasn’t easy and I think I don’t know why in the hospital we are not given that option to talk to a counselor or psych.

    Stephanie Ho 48:49

    I never got offered that chance until much later. You know, I just feel like I should maybe even just chat with someone to make sure that I’m dealing with things. I have not forgotten something. And then I think what frightens me is, so far I’ve had a fairly good journey. But one day, I would hate to think that I had this, I would have this thought. And then I would break down, you know, in this puddle because I just had this huge blind side, which I’d never thought about. So yeah, I think it’s just can be very difficult that way.

    Bill 49:39

    I love what you said there about counseling. I mean, I went to counseling seven days after the first bleed in my brain, just because I was already seeing a counselor. And she’s a smart lady. So I thought, Oh my gosh, like I need to go and tell her about what’s happened to me so that we can talk about it and blah, blah, blah.

    Bill 49:59

    And that was good. But you’re right. Not one time. Not one person came and said to me, like, how are you dealing with what you’ve just woken up from? And not in the sense of like, what’s your body doing because they focus on your body, It’s like, what about your emotional well-being and your mental well-being? Stroke survivors are crying at the drop of a hat all the time. And not one person says, maybe part of the stroke recovery journey needs to include counseling.

    Lack of emotional counseling

    Stephanie Ho 50:37

    It’s just baffling to me because yes, yes, we have between you and me, we have 18 years of experience, but I think it is baffling. Because it’s so ironic. You know, we’re talking about the brain. You know, where every decision every muscle movement, it all starts from one big mass of an organ. And I am I’m so passionate about this particular point.

    Stephanie Ho 51:08

    And I kind of like hop on and on about this in different rehab and stroke boards because I think people forget that again. You might be very good at saving my life but what kind of life are you letting me live if I’m not fully okay to still own my life I mean that by knowing you when you wake up, people would give you meals they tell you when to shower, they tell you when to exercise, and then you just get dropped back home thinking yeah, off you go and I don’t think it’s very fair.

    Stephanie Ho 52:00

    Or reasonable to expect that a person will just pick up where you left off? And for me to be completely autonomous or feel empowered enough to have been educated, and that’s a whole other thing to keep going, you know, neurological conditions are very like literally the hardest thing to get better. It’s often a lifetime kind of maintenance thing.

    Stephanie Ho 52:30

    And you just expect me to know what I’m doing whereas you know, when I do my sit-to-stand thirty times every day you have not explained to me why I’m doing them all kinds of muscles you’re trying to ask to activate it’s a missed opportunity. And luckily between I guess when we had our strokes, you know, good 10 eight years ago, now It’s a lot better, I’m so pleased and relieved to know that there is a new shift to patient-centered care and they are now beginning to realize that the patient can be an asset, let alone also the subject matter experts themselves, they just please do ask them. Ask them what goals they want, because you’d be surprised. Even though we might be strict about work attire. We have, you know, us behind us, we do have our brains and knowledge, please use that asset as well.

    Bill 53:45

    Yeah, it’s interesting. , I did get asked by two people what I wanted to achieve in rehab. And imagine how many people I saw like we saw we always see heaps and heaps of people at the beginning. There were only two people who asked me what I wanted to achieve one-on-one in outpatient rehab, and that was when I wanted to get to the point of running and not running a marathon but just running off the road, for example.

    Bill 54:09

    Yeah, safety running. And that person asked me, What would you like to achieve? And I said that and that’s what we worked on. So that was amazing. Then another person asked me, What would I feel comfortable doing, and what kind of exercises because I was at a facility that had a swimming pool, when I was learning how to walk again, I asked them to let me use the swimming pool to walk.

    Bill 54:33

    And that was amazing because I felt safe. It was warm. It wasn’t heavy, you know, I was being you know, I was kind of floating. And I was just feeling I felt completely safe. And those two things made such a massive difference that that I had a choice. And be that I will then actually they had the insight to ask me whereas before that the whole process where they evaluated me Included only.

    Bill 55:02

    This is what we’re going to do, these are the exercises that we’re going to do. And it came a lot later when they asked me what I wanted to do. So it meant so much to me to be able to give them my version of what I wanted to do. And, of course, then I was more motivated, I was happier to be there. I was gonna, by default, create more neuroplasticity and get better results just because I was motivated.

    Stephanie Ho 55:31

    Of course, I just think that you know, it’s been so long ago, but those still spot that sparkle in your eye. Just like can you imagine if they did that throughout your recovery? You know, can you imagine how much better and how much less stress or heartache you could save? I’m always saying that you might be exercising your foot or an arm.

    Stephanie Ho 56:06

    And that’s a physical result. But what we’re exercising is the brain. And it’s not like a broken bone where if I just left it would just heal by itself. It is the cruelest and most boring thing you will ever go through, you know, doing 50 100 mundane exercises, but that’s what I call the nugget of gold, where you need to kind of, I often use the example of rehab needs to be as difficult as almost like a hard math problem.

    Stephanie Ho 56:52

    If you’re doing an exercise, that it’s challenging and it’s just making your brains scrambled because it’s so hard. You are shedding those synapse fires between the brain and the part of the brain of the body you’re trying to move. And I hope, I wish I wish a therapist had told me this much, much earlier because until I realized the difference, it’s not like I’m going to the gym to be like a, you know, a meathead gym junkie.

    Stephanie Ho 57:29

    It’s I’m trying to do a really hard math problem like with my body. So having that education, I think is key. Having that bringing that person along, the ride of their recovery, explaining why things are happening. They are, why they are, and how we should be doing them brings up that you know, motivation that you mentioned, but also the empowerment and autonomy that comes along with that.

    Stephanie Ho 58:03

    So when you know, put them out to the real world they’ll feel confident enough to continue with that, and then using those principles of goals and also what you were trying to achieve they’ll you know Westmont so we’ll be able to slightly fine-tune in different aspects or activities, you know, ultimately rehab is really about being able to function in day to day life and I try to do that with everything I do when I went back to work. That was the ultimate speech therapy, you know, in every way. So, yeah, I wish we had more autonomy, you know, and less that’s kind of wrapped up in Cornwall.

    Bill 58:30

    I remember you said some things that triggered my memory again. And I remember when I was playing soccer as a 27-year-old or something like that. You would get ready for the game, the first game of the year, and you would do a whole bunch of training and then you would go and play the game and you would realize, no matter how much training I do, I’m not a game fit. I am still not able to sustain myself for a whole game.

    Stephanie Ho 59:30

    I understand that.

    Bill 59:31

    Yeah right? And isn’t that what stroke recoveries like I did, probably four years of rehab recovery, all those things? And after surgery, I was probably out of action, maybe for about another two years. So maybe five years, where I was doing a whole bunch of stuff that was related to me. Recovering and healing where I was focused on it a lot. And then I went to work in an office behind the computer for the first time after five years. My lord. Oh my god, no match fitness. I could not get through three minutes of sitting behind that screen, you know?

    Stephanie Ho 1:00:19

    Yeah.

    Bill 1:00:20

    Slowly slowly. That ramped up over three years, it ramped up to where I was more capable, but still not fully comfortable with being behind the computer for many, many hours without breaks and all that kind of thing. I was always up and about. So that’s what reminds me of match fitness doesn’t come from just going to rehabilitation because it doesn’t create real-world situations, does it?

    Stephanie Ho 1:00:45

    Yeah, I love that analogy. Particularly maybe because I’m also a football supporter. Maybe I don’t want to know, who you support we’ll talk about that later. But I think I’m the brain it’s so effective that you know the term or the saying use it or lose it is well in effect. But the thing is when we do rehab exercises in the hospital or at home those are very controlled environments you know you are not distracted you do not get stressed because you know that you’re not being watched by another person.

    Stephanie Ho 1:01:31

    Once you’re out there there’s only so much we can do before you know matchday but that’s the point like put a date and then go out there and just see how it goes. Make sure you have those safety nets of you know, a person you can call at any time, or for me it’s always like a bottle of water and a bit of sugar because that oh, you know, the brain loves the carbs.

    Stephanie Ho 1:02:00

    So I had that, that fix, but I think I think when I went back to work, which was two years after I had, you know, I didn’t know what had happened to me, all I knew was it was really bad. And I couldn’t wait one more moment to just not try and get better that I just work and work and work. And I used my rehab to become my new nine-to-five job. I had seven doctors, you know, every day, I had seven hours or something.

    Stephanie Ho 1:02:40

    Yeah, I had three boxes to take every day and that was PT, OT, and speech and, you know, I just make sure that I was just, you know, covering all my ground. But then on the day that I go back to work which is, you know, two years on It was just so it’s almost comical because I like geared myself out so much. And then at the time I still living with my parents and they lived back in the Shire into the city on the train that’s like 45 minutes at a time and no Express services at the time so that’s two hours just traveling.

    Stephanie Ho 1:03:30

    And then I think I started with just two hours for the first day going back and I was just wrecked. I’ve never been so wrecked, because your brain A like first of all, first of all, you’re in this unknown environment, you’re completely bugged, you’re fully engaged. You feel like everything is weirdly attacking you because It’s also very new. So your concentration is to, you know, maximum 100% just ready to fight and flight, just in case.

    Stephanie Ho 1:04:10

    And then. And then of course, when you go back to work, I work for a financial services company. At the time I was in consulting and there were a lot of young new people, two years on of course, half hold on for I didn’t know, and also meant people didn’t know me or what’s happened to me.

    The more we do it the easier it gets


    Stephanie Ho 1:04:36
    So everything was a challenge. Everything was hard. And I think I’m not until you kind of do as much as you can. In terms of prepping and then you go out and just test it. Yeah, it’s A it’s gonna be very exhausting. It’s gonna be daunting, but the good news is, the more we do it, the easier gets, it’s just like anything else practice does make it so much easier.

    Stephanie Ho 1:05:09

    I went from working three days a week, two hours a day to increasing that to three hours, four hours, and then so on and so forth. And I’m so relieved to say that that’s happened. Because fatigue is just another thing too, you know, you can either make it or break, whether you can or not increase those hours. But, I hesitate to share this part, but I’ll just say it anyway, but this has worked for me. So there’s a caveat.

    Stephanie Ho 1:05:46

    But I remember thinking, you know, if the brain is the muscle, which it is, I’m going to, you know, I’m going to test myself and push myself a little more each day. So there’s this moment where you feel completely just, you are a zombie. You are like less, you know, it’s like you’ve had 10 beers kind of thing, and you’re just really out of it.

    Stephanie Ho 1:06:14

    And I just remember, you know what, I’m gonna work for an extra 10 minutes and see how long ago and I kind of apply that every day. And like, sometimes he had this like buzzy headache where your body is telling you you’re new. You need to shut down. I went through that. And then yeah, somehow it kind of just got better and easier Shoal. Everything else was getting easier as well. So maybe I was refocusing that energy on those 10 minutes, who knows? But it all kind of worked. I think pushing yourself within reason. did help me at least for my fatigue.

    Bill 1:07:02

    Yeah, it’s one of those lessons learned. You have to, it’s like anything, you’ve got to overdo it to work out where your limit is. And then you know, okay, I overdid it for only five minutes and I achieved something and it didn’t bother me and it was okay. But overdoing it for half an hour wiped me out. that’s not for me to do. I’ll just take it easy. And I’ll be gentle on myself and I want to give myself a hard time. If I don’t succeed, you know, I’ll just say easy.

    Stephanie Ho 1:07:32

    That’s the fact that you would try and you would be brave enough to risk, you know, humiliation or to ask for help. That in itself is something to be congratulated and to celebrate. So you should be very kind to yourself, you know, you know that saying of, you know, half of the battle is turning up. So people who have had strokes are even more so. Because we work so much to get back to like, you know, like that I, I have to do all that stuff. You know, we should kind of um take the time to, to appreciate that because of all people we should be able to know just how much we’ve gone through.

    Bill 1:08:30

    Yeah, one of the lessons I learned was if I thought about something challenging, like being in a place where there were going to be a lot of people at a party or family gathering or something. The simple response was, no, I don’t want to go, I’m not going and then and then that was easy to fall into that routine and then end up nowhere and then always be isolated.

    Bill 1:08:54

    So it became Alright, I’ll go and then when I went It wasn’t about interacting or hanging out or talking rubbish or drinking beers or anything like that. It was just about getting there the task was to get there. And then everything else that came was a bonus. So if it came to it I got to stand up by the barbecue and turn around like men do, but then that was a bonus. If I didn’t have the energy to do that, I sat there with the chair.

    Bill 1:09:25

    I kind of allowed myself to do to not talk myself out of something. Because previously if I had gone there, I would have done all these things and participated in this way. And in that way, this was now just about turning up and that’s it.

    Stephanie Ho 1:09:41

    Absolutely, Oh, I love the way that you reframe that. Because it is about taking you one thing at a time. But to me, it’s also a missed opportunity. You know, we talked about rehab ultimately being us going out back into the world. The one thing that I struggled with was not being able to communicate and therefore express myself, not just, I need this or I want that I want to express my humor, I want to connect with people.

    Stephanie Ho 1:10:23

    That was very, very hard. So, as I said, I could have as a 22-year-old, you know, it’s all about being cool. And you know, I’m still with no, but the thing is, I realized that if I, if I started saying, No, it was, oh, I would most likely start having that habit. So I found a little hack actually, for anyone who is suffering from aphasia, which is Probably one of three people in jail after having a stroke.

    Stephanie Ho 1:11:03

    So you’re not alone. I enjoyed going to bars because I’m a people is pretty tipsy anyway, so you’re forgiven if you have to repeat yourself. It’s very loud. So you’re, also forgiving them because you’re talking slower. After all, you need to enunciate. And I’m telling you, it’s the most. It’s almost counterintuitive, but it’s a very safe space to do that because no one cares about that.

    Stephanie Ho 1:11:42

    People don’t care too much about what you say, or what you’re not saying. Turns out people are fairly self-centered in general. So if you’re struggling, you’ll be surprised how much people will quickly you know, step in and say you must be like, oh, they’ll try and finish your sentence for you. So, yeah, for me, that was a nice hack, but also kept my confidence up, you know, it allowed me to maintain my friendship circles. Sure. I was like, oh, applying an overlay of rehab lens of rehab, which helps.

    Stephanie Ho 1:12:33

    But you know, it’s so important to still go get out there and just not be too worried about how other people see you. Because ultimately, if they don’t see the value or the beauty of the person that is still within you, then maybe they’re not the right friend you need anyway. So yeah, having a strike is weirdly great as sifting good, and not-so-good friends.

    Bill 1:13:04

    There are a lot of good things that came out of my stroke okay, that looks like it is an awesome way to end the episode. Thank you so much for coming on and sharing your insights into stroke. I think it’s gonna make a world of difference. These types of episodes do make a difference. People listen to them. They don’t feel alone. They don’t feel like they’re the only ones thinking about the stuff that we spoke about. As a result of that, maybe some of the things that we said can trigger their mind and make them think about perhaps how they go about their stroke recovery and what they could do differently. So thanks for doing that. I appreciate it.

    Stephanie Ho 1:13:42

    No, my pleasure, Bill. It’s been a pleasure and I enjoyed it. Thank you so much.

    Intro 1:13:48

    To discover how to support your recovery after a stroke go to recoveryafterstroke.com

    The post 10 Years of Stroke Recovery – Stephanie Ho appeared first on Recovery After Stroke.

    1 hr 14 min
  • Beyond Trauma – Deborah Stathis

    Deborah is the author of the book Beyond Trauma and although she is not a stroke survivor she knows a thing or two about recovering from a brain injury. Her message is going to resonate with stroke survivors.

    Instagram: www.instagram.com/tragicopportunities

    Website: www.tragicopportunities.com/
    Facebook: www.facebook.com/deborahstathis.author.speaker.coach/
    Linkedin: www.linkedin.com/in/deborahstathis/

    Highlights:

    00:40 Introduction

    05:12 The highway incident
    16:05 Outsourcing rehabilitation
    21:40 Growing up too soon after the trauma
    30:36 Managing Post-traumatic stress disorder
    40:21 The decision to write a book
    48:02 What is there beyond trauma?
    53:12 Experience and recovery from trauma

    Transcription:

    Deborah 0:00

    Something that you were saying before, I think it’s important here, which is that always been about facing the painful, ugly truth is somewhat cliche saying, but the only way out is through, you know. So that is, feel the pain. Go through it. That’s how you’re going to learn. That’s how it’s not going to hurt anymore. The only way to not experience the trauma is to experience the trauma so to speak, get through it. Otherwise, it’s still there.

    Intro 0:32

    This is recovery after a stroke with Bill Gasiamis. Helping you go from where you are to where you’d rather be.

    Introduction


    Bill 0:40
    Bill from recoveryafterstroke.com. This is Episode 101 and my guest today is Deborah Stathis. Although Deborah is not a stroke survivor, she knows a thing or two about brain injuries after recovering from a motor vehicle collision when she was just 19 years old.

    Bill 0:57

    Amongst other great milestones and achievements. Deborah has written a book called Beyond Trauma: Turn Tragedy Into Opportunity. And that is why she’s a guest on the show today. Now with this episode, you might notice some static or noises that interfere with the interview. But I’ve done my best to remove this interference as much as possible.

    Bill 1:18

    Unfortunately, the stability of the internet varies in every location. Sometimes it’s better to persevere with the interview, because the message my guest has is far more important, and therefore rescheduling does not become a consideration. Because of these issues from time to time, I have arranged it so you can now download every episode of this podcast as a PDF.

    Bill 1:43

    It’s perfect if you are like me and like to take notes or highlight parts of the interview for future reference. Or if you prefer to read rather than listen. Just go to recoveryafterstroke.com click the image of the episode you just listened to, and scroll down until you see the orange download transcript button.

    Bill 2:03

    Click the button and follow the prompts and the download will begin. You should also know that recently I put everything that I learned about what is important in stroke recovery into a course called 10 Steps to Brain Health for Stroke Survivors, and module one is now available at recoveryafterstroke.com.

    Bill 2:24

    This is a course that is included as part of my recovery after stroke coaching program that will help you overcome fatigue, reduce anxiety, and support your memory amongst other things. This 10-step program has been created to complement any medical interventions and works in conjunction with any other physical therapies that you are undergoing.

    Bill 2:47

    So if you’re a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety. This course is for you. If you feel like there is not enough support after you leave the hospital and you’re afraid for your recovery we’ll go backward, then this is where I can help.

    Bill 3:04

    While you are participating in the course, I’ll coach you and help you gain clarity on where you currently are in your recovery journey. I’ll help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal. Right now for everyone interested in learning what recovery after stroke coaching is all about, you will get a seven-day free trial to decide if it’s the right fit for you.

    Bill 3:32

    So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching. If you are listening online, and now it’s on with the show. Deborah Stathis. Welcome to the podcast.

    Deborah 3:49

    Thank you. Thank you so much.

    Bill 3:52

    I’ve been following your work for a little while and every time I saw one of your posts on social media, I thought wow this, I’ll be honest, I thought this chick has a similar point of view to me, and has a similar kind of idea.

    Bill 4:09

    And I don’t think you’re a stroke survivor, but I was intrigued by the stuff that you do. And then, at one point, I saw you post your book and talk about this concept of yours beyond trauma. And it started to resonate with me because I always talk about stroke, for me as being one of the best things that ever happened to me.

    Bill 4:32

    And I talked about post-traumatic growth as a concept and in the context of growth and learning I’ve never done so much growth and learning in my life until after my 37th birthday, you’re going to want to experience the first of three brain bleeds and then brain surgery. So can I take you back on the journey that got you to writing the book what happened to you that created the beyond trauma process that you went through that allowed you to get to that point to write the book?

    The highway incident

    Deborah 5:12

    Well, I was involved in a severe car accident. The short version of the actual accident itself is that I was driving home from work a week to the day after my 19th birthday, so I was quite young. The short sort of version is that it hadn’t rained since my birthday day was in January. It hadn’t rained for a long time it was hot in Melbourne and it started raining so it was pretty oily all part of the road up and highway.

    Deborah 5:49

    And I went around a bit of a bend on an old part of the road and I hit an oil slick in my old car, my first car, and I probably don’t remember anything of that. It took a long time to even remember that day. However, following the police report and the witness accounts, It seems that when I hit the oil slick, I lost control.

    Deborah 6:17

    I hit the gravel on the side of the road and did a 180 and I’ve been on and around. Hit the driver’s side in a 1985 Toyota Corolla, which had no airbags. So of course, the steering wheel was in the middle of the car with me trapped there, no airbags so ouch. So I sustained what was a severe head injury. So that was multiple facial fracture breaks.

    Deborah 6:50

    The skull base, you know, skull base, had multiple breaks within it and through the sinuses. CSF leak so a brain leak brain fluid leak, spinal brain fluid leak as well. So acquired brain injury is part of that. Yeah, so that’s the shorter, short version of it. So straight airlifted into the off-road and multiple surgeries, facial reconstruction, and brain surgery to prevent bacterial meningitis and patch up the puncture. So the break throughout the skull base in my forehead punctured the first layer of the membrane around the brain at a time, and, that required patching up to prevent secondary infection. So having bacterial meningitis which of course if it got that in the brain, well, see you later.

    Deborah 7:59

    Yeah, so I’ve had my face reconstructed, I’ve had multiple surgeries and implants and all sorts of things they put in my face, metal, there’s pins there’s all sorts of things in my face, and lots of surgeries to help assist with the movement of my eye. And of course, the brain surgery to ensure that I don’t get back to meningitis, which is the time frame passed now, so I won’t get that.

    Deborah 8:27

    And yeah, so that’s that’s the short version of the of what happened to me. In the part where we’re focusing on what we said, the journey to be on trauma started straightaway. And when I came to enough, I tried to escape the hospital. See my hands and my butt hanging out with my gown too Deborah where are you going?

    Deborah 8:58

    Where am I going? I’m going home. Now, of course, I was out of it, head injury medicine having brain injury, you name it right and face is out here, bruises, you name it. However, in my mind, maybe it’s a core instinct of mine or something that I was not going to be a victim. That’s not me. So that all the talk around me that I could hear around she’ll never be able to do this never be able to do that.

    Deborah 9:26

    Doctors came in and asked me what my name was, who is the person next to me was, of course, my mother what time is it what, and who am I. You know, that was I had enough recognition to understand that these people around me didn’t think I knew what was going on. And I suppose part of me didn’t because I was drugged off my face, and of course, a head injury. That said though, straightaway, I was like, no, this isn’t me. I’m not going to be this person. I’m not going to be this person here who gets poked and prodded at and who’s gonna live like this not happening?

    Bill 10:03

    Very cool. I like that defiant, 19-year-old, you know, think they know everything about the planet and the world and all that kind of stuff and I like that. I like that because that’s what’s good about being a teenager, you think that even though you have half your heads missing, you’re still bulletproof, and you’re going to continue this fight and you’re going to go down this path.

    Bill 10:25

    So when you woke up from surgery, what was it that you couldn’t do?

    Intro 10:30

    If you’ve had a stroke, and you’re recovering, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things, but obviously, because you’ve never had a stroke before.

    Intro 10:52

    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 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 11:14

    These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, 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.

    Deborah 11:43

    Okay, so initially, my first waking moment was my first clear moment. Clearish moment was sort of looking around and thinking where on earth am I and I saw these brown curtain things and I was thinking wow, I mean hospital. I know that sinking feeling now could move everything. Thankfully, I remember thinking I could move that’s good. And then I think it was my mom that somebody asked me, you know, Deb do you know where you are?

    Deborah 12:17

    And I said, I think I’m in a hospital she said yeah, you know what happened? I got hurt I knew I was hurt because ow I was told you know you had a really bad car accident and my first the first thing I said was, did I hurt anyone? Thankfully, I didn’t but you’re hurt kind of figured that.

    Deborah 12:42

    I kind of figured that out. I was very forgetful initially. So most of my injuries were my head. So most of the injuries were in my head I broke to be blunt I smashed my face and punched in the first layer of membrane around my brain and had an acquired brain injury. That was the impact was mostly on this side impact there so I’ve got metal pins and plates throughout my face.

    Deborah 13:14

    Initially, this eye was closed, fixed, and dilated so I couldn’t move it I couldn’t control my eyelid and my jaw was broken so we had to minimize movement speaking, and I was quite confused. I was very drugged and I had a brain injury and swelling in the brain so of course, I was a little bit delirious, I hallucinated a little bit as well I was seeing war scenes and all sorts of things.

    Deborah 13:42

    I remember some of it was quite bizarre physical movement, though I couldn’t move. I had panic, kind of like panic attacks where I was. I thought I was still trapped in the car. So I would thrash about they ended up having to put me on the floor because I was a danger to myself. So yeah, so physically wise initially I was, it was more cognitive than anything else. So I was, you know, a bit confused, very, very tired, and not able to speak as clearly because my jaw was broken and my eye so initially they thought I couldn’t see at all.

    Bill 14:22

    How long were you in the hospital?

    Deborah 14:24

    I was in hospital for about five weeks. And then I went to a rehabilitation center

    Bill 14:30

    And at rehab. What did you do what were the things they were trying to get you back on track with?

    Deborah 14:36

    Well, initially I was skinny because I ate liquid and you know, purified mashed food because of my jaw because it was sort of wired to like it was screwed in my jaw. I think it’s right now. Sorry so yeah, I was very thin post-operative, anemic as well. So skinny, tired, very, very low energy, very dizzy as well.

    Deborah 15:09

    So it’s about getting my physical strength back, and also concentration. So working with my memory. So initially there was a bit of post-traumatic amnesia, especially around the time of the accident. So I couldn’t initially remember the first couple of weeks I didn’t remember my birthday, which was just, you know, a week prior. It was blank. There’s nothing there. But over time, it came back. So there was a bit of physical movement there was, I suppose on the OT side of things. So several things like juggling commitment, and the sorts of exercises to help the brain start to work again.

    Bill 15:52

    Wow, were you just out of school and near uni or going to uni or any of that stuff?

    Deborah 15:58

    Yeah, yeah. I was working in real estate, and I was studying fashion.

    Bill 16:05

    So no more back to school for you for a little while.

    Outsourcing rehabilitation


    Deborah 16:09
    Ah, not for a little while. I’m very proud to say that I pursued rehabilitation outside of the rehab center. So whilst I got the peaks you know from a number of the experts, that stuff and that wasn’t enough for me. So I pursued external advice and support and I researched to the end of the earth to find different ways to help my brain work better.

    Deborah 16:45

    I realized that things were different my brain work differently, which it does at that young age, it rewired itself which is very good. However, it does (inaudible) and goes above and beyond. Find those strategies and create them in a lot of instances as well, to recreate my life and build a future beyond trauma, as I put it, because I didn’t want to be categorized as a victim, and forever living in that bubble of victim. So now you’re limited because you had a brain injury. So it’s like, Well, okay, hang on, what can I do now? What have I learned? How can I be better? What more can I do?

    Bill 17:31

    Were there any underlying fears, though, that interfered with that process of recovery? So imagine at 19 and then at 28 and 21. At the moment, you know, for a little while your life was on hold. And you started to get back into life was it kind of this Were there any underlying concerns about getting back into life before you started to feel like you’re back into it?

    Deborah 18:00

    There was an I remember the confidence issues. Can I do this? And I challenged it. Alright, let’s see if I can do it nothing to lose is better than sitting here thinking I can’t not do anything about it. So I’m very proud to say that I went back to work at the end of that same year. So, and I started, I went back to study a little bit early the following year now I completely remember decided that wasn’t for me in the end both industries decided it wasn’t for me.

    Deborah 18:36

    However, it was a goal. I set myself a goal because I’m thinking, well, the best place to start is to see whether the life I had suits me now. made a few changes. I mean, I was 19. And he was pretty young. So however, it was, for me it was about challenging the limitations, making the decision to challenge limitations, and seeing what I could do and what I was happy with. Confidence was something that was a challenge.

    Deborah 19:05

    Because a lot of the focus in rehabilitation is what you can’t do and then trying to improve on that. Whereas I needed to shift my focus to Well, what can I do? What do I want to do? And how can I as opposed to I used to do this like this, but maybe I can do it a different way now. So, looking at changing that and competence. I will be honest physically, too. I mean, you’re talking about a 19-year-old girl who smashed her face in.

    Deborah 19:38

    I had quite a bit of surgeries since then too.

    Bill 19:43

    So was there a little bit of scarring and bruising and swelling and all that kind of thing that you had to sort of give time to settle down?

    Deborah 19:50

    Yeah, well, initially, even when I left rehabilitation, my right eye was closed so I lost the nerve movement to control it. Opened and my eye was dilated so it didn’t move that partial third nerve palsy and paralysis and over time it started to open. See there’s some vision that doesn’t completely move or go all the way up so I have partial paralysis however, it opened and again pushed the limits as I do I remember you know going out with my friends.

    Deborah 20:36

    I had a shaved head put a hat on put a bit of makeup on my one eye at the time and I went out because I didn’t want to be sad. I didn’t want to sit there feeling sorry for myself. I can’t do this because I’ve got one eye close and I don’t look like I used to Okay, well that’s just gonna make it even worse. So I got stared at a little bit but that’s okay. But I grew from that. I grew from that. It challenged the lack of confidence. Because I’m more than that.

    Bill 21:14

    Did you grow up quicker than you may have at the age of 19, then, you know, life kind of tends to get in the way sometimes of us being adolescents for as long as we can, and being teenagers as long as we can, and being all these things as long as we can. So I know that for me becoming a dad at 22 bloody made me grow up quickly.

    Growing up too soon after the trauma


    Bill 21:40
    You know? I reflect on what that would have been like, what I would have been like if I hadn’t had kids and my son who’s 23 now, but I look at him and I go, that’s the same kind of idiot that I would have been, you know, which is perfectly fine he’s a good kid. But just doesn’t need to have any more responsibility because he’s 23. And he’s, and he’s smart. He’s not a dad at 23. So how did it make you grow up quickly? Like, what happened in the way that you approached life generally after the accident?

    Deborah 22:21

    That’s it. That’s a huge question and a really important one, I think, too. And one of the main things was that mortality lesson we gain as we get older.

    Bill 22:31

    Wow, yeah.

    Deborah 22:33

    I got hit with that. Like poof, oh my god, I’m not invincible, you know, that reality of life and death. As we get older, we gain that kind of acceptance around that, I suppose. At 19. I don’t know that many of us are ready for that, especially when it hit me that so quickly and the fragility of life so, I found what was important to me changed very quickly.

    Deborah 23:09

    So, listening, for example, some of my peers complain about 19-year-old and 20-year-old things, which is relevant at the time seemed like kind of, you know, not important to me because like oh yeah, you worrying about what so and so said, my brain fluid came out my nose. Really? Yeah, you’re worried about having the lightest, whatever jacket or whatever.

    Deborah 23:38

    Like, I’m glad my face is still on my head. Yeah. So to bring into context, that was a massive lesson to realize that not everybody had that insight and to be able to say, Okay, that’s still important it’s just important in a different way, and for me to understand that, you know, not everybody’s gonna have that same perception as I have. I was different you know, my behavior was different for some medical reasons as well for a while, but also because my perspective changed my interest in things changed.

    Deborah 24:27

    And I had to adjust to that. So that was a yeah, definitely a challenge. However, my increased empathy helped to balance that because I hadn’t increased empathy. (inaudible) trauma. So that allowed me to go okay, well, that’s important to you. So alright. But relating that was that could be quite difficult.

    Bill 24:57

    Yeah, that could be at night. Do you mean that it wasn’t traumatic for me to become a dad at 22, it just became a lot of responsibility. And then relating to how the kids at 23 at 22. And all those ages is like, shit, man like you guys have got a completely different view of the world. And I appreciate and understand it because I was there not that long ago, but I can’t be like that anymore.

    Bill 25:23

    I’ve got to be different because I have a different thing that’s going on in my life. Is this bundle of joy that came into my life that is going to become not joyous very quickly if I remain? The 21-year-old version of myself with a child won’t work. So I know what you mean about not being able to relate to people and they couldn’t relate to me. So what that meant was that I lost a lot of those people, they kind of fizzled away and moved into different directions and I get it.

    Bill 25:55

    Maybe I was the one that moved in the direction that was different than they kind of stayed their trajectory, their path to whatever the changes were that they were going to experience in their life later on, you know, marriage or responsibility and all that kind of stuff. Were you traumatized? So we’re going to eventually get to the book but It sounds like from the story that you’ve written. And I imagine reflecting that there was underlying trauma, both physical and then I imagine emotional and the rest of it.

    Deborah 26:34

    There’s a lot of trauma. My choice to focus on beyond trauma and focus on moving forward was because of that trauma and that pain. So, if I talk about if I reflect on the physical trauma. So both the absolute physical agony of having my face smashed in and the worst part of the breaking things skull based I mentioned skull base, multiple fractures and break through there through the sinuses and my face, like lower jaw, upper jaw cheekbone, around the eye or my cheekbone, upper jaw, and my nose, you know, all being smashed in basically.

    Deborah 27:33

    And the surgeries after that, he said that his incredible amount of pain and that’s difficult. Then, from my perspective, you know, I’ve had my face cut open from the inside to reconstruct my face. My face cut off in my head kind of cut open for brain surgery. I’ve had tubes put into my brain I input into through my skull, I’ve had tubes down my throat, I’ve had thousands of scans and whatever done these things are frightening because you don’t know what the answer is going to be the environment itself is frightening.

    Deborah 28:12

    Am I going to be alright? Can I know what’s going to happen? Am I going to get sick? Get meningitis in the brain and Die 10 years later. And then my life will be the same, you know, 19 I’m never gonna look normal. No, I’m the first time and I put this in my book as well and written about this before, you know, in other instances where real pivotal moment for me was in the rehab center, and there’s a fogginess a clear from all the drugs and I went up to the mirror for the first time because they cover the mirrors in the hospital.

    Deborah 28:50

    Yeah, because I had, I have a dreamlike memory of it because I was out of it. swelling and stuff in the brain and all the medicine I have a dreamlike memory of it I did see my reflection and that was when, you know, I freaked out understandably so doctors and nurses covered all the mirrors in the hospital. So one of the first times I looked at my reflection was in the rehab center on my own for the first time. There was a little basin in my room and I looked in a mirror. And I went up and I looked and looked.

    Deborah 29:38

    I cried. You know, half my head was shaved and I had long hair like I do now. My head was shaved. And this side of my face was sunken, lower, and my eyes were closed. Just embarrassing things. And I thought, whoa, okay. What are you gonna do now? This isn’t you what are you going to do now? And that was pivotal because I made that decision and now I’m not giving up on things, either. My instinct was never to give up on my life that was instinctual. That was like I’m gonna fight. That was a dream. I’m escaping. I’m not a victim. That part though that Oh, god, my Yeah, I’m not giving up on that either. That’s not what I look like. And well, that’s not what I look like now either.

    Managing Post-traumatic stress disorder


    Bill 30:36
    Trauma would have been from the accident and then it would have been reflecting from the accident and then it would have been as a result of multiple surgeries and looking at yourself for the first time and coming to terms with all the differences and what you’re noticing it would have been because of the way that other people saw you reacted to you. Spoke to you and treated you.

    Bill 31:03

    Some of these traumas may have been building one on top of the other on the other way you seeking psychological counseling or some other kind of support in those early days to help you through, or did you miss out on that stuff?

    Deborah 31:17

    That’s a good question. And I found that there’s a lot of was a lot of initial sort of support and then you sort of go off to your own like she’s right now tick, you know, and, and again, because I’m very focused, it was very, you know, getting all the things.

    Deborah 31:38

    Things raise their ugly head, so to speak. A little later. So, so busy trying to steam train, getting my life back again, you know, reviewing this and reviewing that and what working in surgeries and all sorts of things, and then it’s sort of so I started to realize changes in my behavior, panic attacks, flashback type things post-traumatic stress disorder symptoms so to speak.

    Deborah 32:15

    So, you know, It started, to interfere with my life so I sought some professional help. Absolutely. And I had different times, did lots of research. I’ve sought some more conventional and unconventional methods as well. So things like an etiology, acupuncture, meditation, exercise these sorts of things as well.

    Deborah 32:44

    For me, a big part of it was getting my research into how the brain works and how human behavior works which consequently led to further study and now my professional career as well. However, that was important to me to understand it understand the trauma, I had an awareness that I was different This was affecting my life. So I sought out ways to work with that and understand it.

    Deborah 33:11

    So as I could improve myself and work with that, and you know, the trauma, there’s so many layers to trauma, so many layers. Emerging after surgery, for example, is fun, and you know, it goes on. It’s not just the accident and recovery itself. It’s what happens after it’s adjusting to my brain working differently. It’s adjusting to my new lifestyle, it’s getting strong again, it’s dealing with that anxiety and flashbacks and dreams and yet, there’s a lot of elements to the actual trauma part.

    Bill 33:55

    A lot of strokes of ours are going to relate to what you’re saying because I know you didn’t have a stroke, but You had experienced the massive trauma that came out of nowhere, everything was okay one day, but it wasn’t okay the next day, and then it continued to not necessarily be okay for many, many days after that years even.

    Bill 34:12

    And in that scenario, that process, that process creates a situation where, there’s so many things that you haven’t experienced or learned about in life, and they’re all coming at you at one time, and it can be overwhelming.

    Bill 34:33

    So when I was a young kid, at 25, you know, four years into being a dad. Having all these dad experiences, mortgage work, and all the stuff that comes with it so young, I lacked resources, and when I would go back to refer to the people that were in my life for support and advice. They couldn’t give me any support or advice. Sure, my dad would say just work more and make more money and do all that kind of stuff.

    Bill 35:05

    And that worked for him. But it wasn’t what I was looking for was looking for something else, you know, more emotional, something deeper. So I went to counseling as well. And I’ve never really stopped going to counseling I’m 46 this year. And I can say that I’ve been consistently seeing somebody about something all the time.

    Bill 35:23

    But early on in those days, I did what you did, I became curious to understand. And the more I understood, the better I felt about things. One of the things I wanted to understand was, Why I had such an inability to communicate with people and feel comfortable with the way that they spoke back to me and communicated with me and why they would use certain words and act up a certain way.

    Bill 35:50

    And think it was okay to treat me a certain way. And I used to go to counseling and ask my counselor, why do people behave in that way. She didn’t know any of the people that I knew. However, she was able to give me a psychological approach to why behavior occurs. And then she was able to give me the layers of underneath that what’s underneath that, you know what, what happened before they walked into the room that I’m not aware of, that may have made them trigger a conversation that made them speak to me like that.

    Bill 36:23

    And when I understood that, it made it better and then I went out and sought out the same kind of approach to understanding what happened, the stroke, my brain bled. What does that area that bleed? What does that impact? What does that mean, On the other, the more I understand, the more I’m able to adjust my life, find ways to get around the problem, and then implement a strategy that’s going to support me in this new way. It just sounds exactly like you did. You know, I like the fact that we are similar in that way. It just it’s just fascinating.

    Deborah 36:58

    It is and I mean, you’re spot on I’m nodding and smiling at you while you’re saying this. Because it makes me think of specifically with myself very much like what you just said there. In my brain injury was the frontal lobe. So that’s the, you know, behavioral part of having the ability to have insight.

    Deborah 36:59

    So a lot of the time with brain injuries. Individuals lose that ability of insight and part of the rehabilitation processes to help them regain that where they can. I’m very fortunate in that. I was so pretty young. So the brain rewired quite well. So I am I still have the (inaudible) which is fantastic. In terms of personality change, people talk a lot about personality change when it comes to brain injuries and the sort of brain injury that I had.

    Deborah 38:00

    And a lot of the time it’s perspective-based as well as the experience itself that changes someone’s perspective and the way they behave. Sometimes it is the frontal lobe with the insight. A lot of the time and this applies to me a little bit is that certain primal traits, your instinctual traits, I suppose, if you think about it that way are exaggerated.

    Deborah 38:25

    So personality traits are exaggerated. So with me, I’ve always had an extroverted personality that became stronger than it was before. So I’m aware of it, though. So I can turn myself down too easily. Perhaps in those first couple of years, or perhaps behavior a little bit like

    Deborah 38:51

    people out there in the face, because my brain is still healing as well. And then having that ability of insight and going I suppose the extra mile you know, kind of hang on some something off here I get overly upset or I get you know, I can be alluded to whatever it is having the ability, thankfully to look at that and then do the research, you know, sought out experts and read and research everything I possibly could to then understand why.

    Deborah 39:26

    And put in the strategies to deal with that and understand what the problem was, I’ve always understood what’s appropriate and what’s not where I can now. Not be ruled perhaps by certain emotional things in terms of behavior.

    Bill 39:47

    How are they you know?

    Deborah 39:49

    Never ask a lady her age, I’m just kidding. Okay. I just turned 40 in January.

    Bill 39:57

    Alright, so you just turned 40 in January. This happened to you 21 years ago. And at what point did you think you’re going to reflect on it in this way by making a book and putting it in writing? When did you get to that stage?

    The decision to write a book


    Deborah 40:21
    It was something that was developing over time. So I sort of became the go-to person for advice from a lot of people. And the increased empathy and wanting to help others just kept, kept growing, and when I’d seen you know, people in hospital waiting rooms because you can imagine I’ve had lots of follow-up comments as to through appointments, not brain-wise, thankfully, which is good. Now, however, in terms of my face and stuff, so that you know, especially a few years, especially the first 10 years, following numerous follow-up appointments and making sure that I was okay and everything was working.

    Deborah 41:09

    Just seeing some of the people in the waiting room and rehabilitation center felt like how can I help? And then people struggling in their lives with other stresses and traumas, and just really thinking, How can I help? You know, with what I’ve been through and looking at? I found that when I shared my story with people saying, oh, my goodness, you’ve helped me so much.

    Deborah 41:37

    If you can get through that, you know, then I can get through whatever it is, and thinking, well hang on. I’ve got strategies I can help you with. So you know that started to evolve over the years and then I started working in professional education, and training.

    Deborah 41:57

    And the more personal and professional development I did on my own accord, you know, led me to thinking well, I’ve got to get it out of my head and into something. So that was probably I started thinking about it probably 10 years ago. We started thinking about it 10 years ago, and it evolved. I had grand plans of writing my book while pregnant with my first child.

    Deborah 42:38

    I was I had my first child 35 I have little ones. That wasn’t I suppose there’s more trauma there and then I had a horrendous pregnancy. hospitalized, hyperemesis low blood pressure couldn’t drive I was throwing up blood. It was not fun. Another trauma with the birth of my first child who I won’t go into but that was another Yes.

    Deborah 43:12

    Very painful thing to go through. She’s, fine by the way, thankfully she’s excellent. I picked up a few things afterward, but of course, I had my second child here. So once 1513 in my late 30s that was another horrendous pregnancy where I couldn’t walk and hospitals and all sorts of things. I could barely walk and barely get off the couch.

    Deborah 43:36

    Again, that was fun. So that of course, you know, slow down me better kept going. And yet I eventually got it out. You know, like, like, like last year was finalized and I just kept chipping away at things and kept chipping away and I sort of went what the core of my coaching and mission Just suppose his wishes that you’re finding the lesson within your trauma.

    Deborah 44:06

    And that’s focused on that. I took what I learned in those other challenges and only added to my insight for my book and my workshops and only added to my understanding of even myself, how I operate and how my brain works as well as how the trauma has affected me and where it flares up again, what triggers I’ve got that I didn’t know I had even some additional ones. So that just added to my purpose, my passion, this is what I’m supposed to do.

    Bill 44:43

    Yeah, I love that. I love that it took you this far of nine years from the idea to the end concept, the end product, and why I love that is because that’s a beautiful thing. It’s a great story, and it’s a great thing to tell people who are recovering Don’t put a timeline on something, have the idea and let it just let it evolve and let it emerge.

    Bill 45:06

    And if it’s something that you’re meant to do, it’ll happen whether it takes five years, two years, one year, seven years, it doesn’t matter. What matters is that it’s a goal. And if you put a timeline on it, and you don’t achieve it, you’re going to be disappointed at that timeline. And recovery from trauma, stroke, or anything dramatic, I don’t believe should have timelines I just have a goal that one day I want to achieve. I don’t know when.

    Bill 45:33

    And the reason we don’t want to know when is because we don’t want to feel disappointed when we get there. And if you’re the kind of person who allows yourself to get down about that kind of stuff. Just don’t put a timeline on it. Just say that you will get better and just make it happen whenever it happens. Same with the book, you know, was it therapeutic to write the book did it do more than just allow you to get all your thoughts into pages?

    Deborah 46:01

    Oh, yeah, it was therapeutic in a very painful way. Because I got all the medical records from the Alfred Hospital. And when I read when I read through them, it was worse than I understood prior my injuries were worse and brought back all sorts of things. So looking at all of that, and reading all of that was confronting.

    Deborah 46:37

    However, I grew from that and I gained more insight as well, my injuries also suppose I gained insight about myself where I saw just what I achieved. It was worse when I realized. When I read the actual injury to the brain as well, perhaps I had never really given myself any credit for what I achieved, because I just kept focusing on building up a lot of victims I’m going to rebuild my life and I’m going to learn and I’m going to grow which helped me in a very good you know, very good place.

    Deborah 47:22

    However, I wasn’t stopping to Well, I’ll say smell the roses, but I’m a nice mix after the surgery and brain injury. However, as the saying goes, stop to smell the roses, and subsided, you know, survived a lot. So, that that was Yeah, it was a painfully healing process, which is again at the core of my message and Beyond Trauma and Turning Tragedy Into Opportunity.

    Bill 48:02

    So what is there beyond trauma? What is there?

    What is there beyond trauma?

    Deborah 48:09

    That’s a good question that varies for everybody specific. The way I look at it is the term that I use, which is also the name of my business, which is tragic opportunities. So that is creating opportunities from trauma. So the tragedy is the injury, the pain, the suffering, the stress, whatever that is. The opportunity is what we can learn from that.

    Deborah 48:37

    What insight we can gain from that and how we choose to use that knowledge to make better decisions, improve ourselves, and improve our lives, relationships, etc, how we use that information? So that’s what is beyond trauma.

    Deborah 48:54

    Recognizing what what you have achieved what I have achieved recognizing that looking at the lesson learned, taking that information, and making informed decisions. So I’m not who I was not necessarily who I was going to be the direction and I’m still me I’m Deb, Deb is more than, you know, the label that I had on myself, I’m not big on labels now.

    Deborah 49:18

    You know, I’m more than a fashion student or real estate agent wasn’t an agent then I was too young but at the time, I was doing bits and pieces, a thousand things that I’m not I’m not what I do I’m me. And as me, I can choose to do what I want. I can choose to be the best version of myself. And that’s what’s beyond trauma. Freedom, the trauma was (inaudible) labels have chosen who you are being what you do and things, you know what that doesn’t matter, so I can, I could authentically reinvent myself and just go for it.

    Bill 50:11

    Yeah, I like that. It reminds me of a process that I go through with people at coaching, you know, who are afraid to delve into what’s scary and uncomfortable because they’re in pain. But they have this idea that it’s more painful to worry about how they’re going to go and I get it, it is more painful, but it’s only more painful for a short amount of time.

    Bill 50:36

    Whereas before you go there, it’s painful all the time. So going there gets you an idea to kind of face the beast and then after that, it’s nothing and that’s where this relief exists. And if you get a taste of that, if you allow me to support you so that you can go there once and get a taste for it. Then you’re not to stop, you’re going to continue seeking the relief from every traumatic experience that you’ve had in your life and you’re going to be less afraid to go into that place where it’s you know, scary where it’s dark and where it’s not comfortable.

    Bill 51:18

    I love your answer to what is beyond trauma, you know, relief and this new opportunity to start, anything you want and no labels. That is the most amazing part that’s really what’s there no labels because I came from trauma and in trauma, I was traumatized. I was afraid I was this I was that. And now there’s no labels and now I can create a new, more empowering set of labels that I can use to benefit me and that I’m going to make the most of now that I don’t have this trauma hanging around. Do me a favor, can you grab the book and bring it to your camera so that we can see it close up, it’s a great cover.

    Deborah 51:22

    Is it lying? Okay like that.

    Bill 52:13

    That’s perfect. I love it. Is that a little bit of Terminator? Or is it a little bit $6 million woman like what’s going on there?

    Deborah 52:21

    That is it’s an image I had in my mind for a long time. Because for me it’s symbolic so that’s my skull, obviously with all the I don’t know how much you can see on that with all the metal pins in that 4×10 centimeter hole in my heart, the brain surgery. So that is, you know, that is me. So that’s showing what’s underneath. This is who I choose to be. It’s a lot of assumptions that could be made about the life of someone with these injuries. And this is me going, this is me. I’m just like, everybody else, so to speak.

    Deborah 53:08

    You know what I mean?

    Bill 53:10

    In an evolved kind of way.

    Experience and recovery from trauma


    Deborah 53:12
    Exactly. Yeah, that’s exactly right. So it’s something that you were saying before, I think it’s important here, which is that always been about facing the painful, ugly truth. Because it’s somewhat of a cliche saying but the only way out is through. So that is, feel the pain. Go through it. That’s how you’re going to learn. That’s how it’s not going to hurt anymore.

    Deborah 53:47

    The only way to not experience the trauma is to experience the trauma, so to speak. get through it. Otherwise, it’s still there. And that’s the same that triggers. So with PTSD, when I have certain things that trigger me, I need to work on what it is sometimes it’s not. So it’s not obvious. And I’ve done some additional work on that more recently as well.

    Deborah 54:11

    And some very, very painful things came up. However, the only way to get past that was to sit with it, to sit with the actual memory that was dormant, I suppose, sit with that and remember it and curl up in a ball on my floor and cry my eyes out. Now, when I think about it, it doesn’t hurt anymore and I don’t get triggered like that anymore in certain instances or sounds or visual things.

    Deborah 54:39

    So that’s an example of that, as well. So the cover for me was important. Because for many years, I sort of so much focus on hiding, so to speak, but what happened you know, fix my face was like I used to, I noticed sorts of things and not wanting people to notice.

    Deborah 54:46

    However, by putting that on the cover, I hope to almost well, I suppose, inspire and show others that it’s okay to own your pain, own the ugly truth. And scars make us beautiful. Because that’s where we grow as well. And it’s not something that I need to hide.

    Bill 55:30

    Yeah, Deborah, that’s a beautiful way to end the podcast. Thank you so much for being on the podcast sharing your story and giving us insights into what happens after a traumatic experience and how to get beyond it. Tell me if somebody wants to connect with you. where’s the best place for them to go?

    Deborah 55:53

    Oh, absolutely. So my website which is one place but certainly via emails is a great way of doing it. But certainly, I have a Facebook page, which is Tragic Opportunities by Deborah Stathis. I’m on Instagram as well same title. My website is tragicopportunities.com and of course, email, which we call tragicopportunities.com

    Bill 56:22

    Thank you so much.

    Deborah 56:24

    Great. Thank you so much as well. Yeah, fantastic.

    Intro 56:30

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post Beyond Trauma – Deborah Stathis appeared first on Recovery After Stroke.

    58 min
  • What It’s Like Living With A Stroke Survivor – Christine Gasiamis

    In episode 100 Bill is joined by his wife Christine Gasiamis who shares what it was like for her to go through a stroke as a wife and mum and then to live through Bill’s recovery and experience all the ups and downs that stroke survivors go through.

    Socials: www.instagram.com/chrissy_gas/

    Highlights:

    00:57 Christine Gasiamis

    04:29 Noticing the stroke symptoms
    09:36 The moment of truth
    14:50 A false sense of security
    17:01 Dealing with the drug side effects
    25:24 The second bleed
    40:43 The second post-stroke aftermath
    48:00 The gut-brain access
    58:53 Dealing with things personally
    01:09:12 Dealing with a loss on top of the 3rd stroke.
    01:23:42 The surgery was a success
    01:29:34 Stroke carers tend to neglect self-care
    01:37:22 Appreciation for stroke carers

    Transcription:

    Christine 0:00

    Anyway, I sat down and said hello. And of course, your mom was sitting there with the boys. And she looked at me, she said, so how’s Bill doing? And instead of what I may have rehearsed in my mind how to approach it and say, Oh he’s fine, he’s resting. I looked at her just burst out crying and said, He didn’t know who I was. Well, if there was any way I could have killed my mother-in-law, that would have been the way to do it. I saw the devastation on her face not to mention the boys because they were in there so caught up in my own emotion, fear that I had felt it when I was trying so hard to calm myself down before I went into the house. It didn’t work.

    Intro 0:50

    This is recovery after a stroke with Bill Gasiamis. Helping you go from where you are to where you’d rather be.

    Christine Gasiamis


    Bill 0:57
    Bill from recoveryafterstroke.com this is episode 100 and my guest today is the one and only Christine Gasiamis. Christine is my ever-suffering better half and I changed her life as well as mine quite dramatically when in February of 2012, I was diagnosed with the first of three bleeds on the brain due to a ruptured arteriovenous malformation.

    Bill 1:20

    This is a great milestone episode for me and the podcast. Because as you will hear in the episode, we’ve had to overcome so much heartache to get to this point. And now that we are beyond the eight-year mark post-stroke, and almost six years beyond surgery, there’s been so much growth and personal development. And I hope that our story will give you hope and inspire you and that no matter what you can get through and overcome a lot of what you’re going through and come out on the other side.

    Bill 1:54

    Recently, I have also put everything that I learned about my recovery in the last eight years into a course called 10 Steps to Brain Health for Stroke Survivors, and module one is now available at recoveryafterstroke.com. This course is included as part of my recovery after stroke coaching program. It will help you overcome fatigue, reduce anxiety, and help support your memory amongst other things.

    Bill 2:22

    This 10-step program has been created to complement any medical interventions and works in conjunction with any other physical therapies that you are undergoing. It’s a course that you can take from your own home so you don’t have to go anywhere to participate. You only have to log in from your computer.

    Bill 2:42

    If you’re a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety. This course is for you. If you feel like there is not enough support after you leave the hospital and you’re afraid that your recovery will go backwards then this is where I can help.

    Bill 2:59

    While you are participating in this course I will coach you and help you gain clarity on where you are currently in your recovery journey. I will help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal.

    Bill 3:14

    Right now for everyone interested in learning what recovery after stroke coaching is all about you will get access for seven days free. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching if you’re listening online, and now it’s on with the show.

    Bill 3:47

    Christine Gasiamis, welcome to the podcast.

    Christine 3:51

    Hi.

    Bill 3:54

    How weird is it for me to interview you while you’re in our kitchen I’m and I’m in the study.

    Christine 4:00

    Very weird.

    Bill 4:04

    Every interview starts with me asking the stroke survivor basically to tell me what happened to them but because you’re not a stroke survivor, thank God. I’m going to ask by asking you what happened to me in your own words can you give a bit of a sense of what it was like for you leading up to me being diagnosed that there was a bleed in my brain?

    Noticing the stroke symptoms

    Christine 4:29

    Okay, so that will be at the beginning when you’re experiencing numbness in your left foot. Which that week at the beginning of that week, you weren’t very vocal about what you were experiencing with me. It was only a few days into it when you were having appointments with the chiropractor that I realized that you were having a bit of an issue.

    Christine 4:57

    But it was not until the Friday of that week that you came, I think you had come back from an appointment with the chiropractor and you came to me and you said that the chiropractor suggested you go straight to emergency because you believed that the problem was not your back.

    Christine 5:20

    It was only at that moment when I watched you walk around the kitchen, that I realized that you were dragging your leg and I asked you why are you dragging your leg. And you said no I’m not. But it was pretty obvious that you were dragging that leg. But um, anyway, I did encourage you to go, you know, go to the hospital, they’ll check you out and you’ll be you know, sent home whatever it may be. But you’re complaining that yeah big job the next day.

    Christine 5:51

    And you’re pretty adamant you weren’t too interested in the hospital. But anyway, I did encourage you to go and you did listen, for once. But I also what pushed me to do it is I didn’t feel right about it. It just didn’t feel right. Watching you dragging your leg, your limp was not more of an issue was the fact that you did not realize that there was a problem.

    Christine 6:22

    That set alarm bells for me. And of course, I have to go to Dr. Google. And the worst possible thing to do is go on to Google and search numbness and sore left foot and dragging of leg and all of that and he came up with all kinds of not-so-good things. Anyway. So I dropped you off, I believe at the hospital and I came home back to the boys. And that was the beginning of the stories.

    Bill 6:53

    Yes, that’s sure was you know, how people talk about Dr. Google, and it’s a bad thing for a lot of doctors don’t want us to go there. But in your case, you do tend to go there for every complaint that every one of your family members has. But in this case, it wasn’t a bad thing, was it?

    Christine 6:56

    No, it wasn’t. If anything, it just confirmed in my mind not to ignore it, not to listen to you, you know, and say, no, I’m going to work tomorrow. It just set it in my mind that I had to take you I had to convince you to go and it worked. And wasn’t most of the things that I had read. And I don’t even think stroke was one of them that I read to be quite honest with you. It was more tumors of the spine, tumors have all kinds of things that I’m thinking of tumors the whole way. But, it turned out to be a bleed and that was not what I read, but sure that was enough to convince you to go.

    Bill 8:05

    Yeah. So how good was I at being deceiving when you contacted me at about 9:30 or 10 pm, at night, after you had come home, you were with the boys? And I said to you go home, go with the boys they’re going to take forever. And I said to you, it’s probably nothing. And then you spoke to me and I think by then I had known the results.

    Bill 8:30

    But again, I lied to you anyway, I said, yeah, they came back with something, but there’s no real, sort of information and call me in the morning and we’ll work it out in the morning. Like how good was I at lying to you and convincing you that that was the case?

    Christine 8:47

    Very good, because I had no idea that it was anything and as far as I knew you were just waiting for those doctors in an emergency because it’s usually you know, such a long wait. So to me, it’s normal, it seemed okay what you were telling me. So for me, it was comfortable enough to have my evening at home, go to bed, and wake up in the morning.

    Christine 9:09

    And I think John, our youngest had a swimming lesson that morning, which was close to the hospital where you were. And it was not until that’s right you sent me a message in the morning you said, bring my laptop, bring a notepad, you know, work stuff that you needed. Can you swing by the hospital and drop it off? To me that was oh okay, he’s fine You know, he wants all his work here.

    The moment of truth

    Christine 9:36

    So I remember dropping off John at the pools and then coming to you and as soon as I came where you were I came to you and then you dropped the bombshell on me. And it wasn’t as normal as I thought it would be.

    Christine 9:58

    Just look so my life changed in a moment. And we had no real answers at that point. It was just they gave you three scenarios. And it was one of those like the what did they say it was like a tumor in the brain. Either it was malignant or it was not. Or they said, it was that or a cavernoma at that time, but they could not tell because of the blood that was covering it.

    Christine 10:33

    And because the MRI cannot go see through the blood, they couldn’t see the cause of these bleeds. So we had no real idea what we were dealing with. So that news I was not expecting I truly believed you. When you said, Oh, it’s nothing. It’s nothing. It’s my back. But I guess that’s why we don’t ignore these symptoms in life. You go to the hospital.

    Bill 11:01

    Am I ever gonna be able to say a lie like that again and be believed? Probably not.

    Christine 11:09

    You could say it but I think I might need to follow you this time to the hospital and it might be at each other subsequent time.

    Bill 11:20

    So what you’re saying is honesty’s the best policy.

    Christine 11:23

    Absolutely.

    Bill 11:24

    All right, remember that there won’t be a next time but I’ll remember that just in case there is. So was I any good at telling you dropping the news and not creating concern because as your husband and then somebody who’s had bad news, I got emotional about it as well that night, and then the next morning and the rest of it, but was I any good at calming you and giving you a sense of everything will be okay? Because I thought I was.

    Christine 12:01

    You were your usual self where, you know, don’t worry, and this is something to worry about. We knew there was a bleed, we knew that but it was under control, you were in a safe environment, you were in the hospital. So that made me feel secure. And I suppose you’re reassuring words if we don’t know what it is that we’re dealing with.

    Christine 12:26

    So until we no worry about a thing, I think I had no choice really, but to take that advice on board. When I think back to that time in life, I was very at that moment, I thought my whole world was falling apart and I also knew that what was happening what happened in that moment in that room, I had to let it stay there because I also knew I had to leave you and then go pick up John from the pool and be normal and not to create and extend fear to a young child.

    Bill 12:55

    And John was young John was 12.

    Christine 13:08

    That’s right. So I had to leave and just really take your words on board that we have nothing to worry about until we know what it is we’re dealing with. And I had to believe that so that I can then go and be a mum, you know, go and drive wherever it was and pick up my child feed, then come back to the hospital and then deal with what was happening with you.

    Christine 13:32

    And you were fine in the sense that you were talking you were conscious, everything you seemed completely normal, other than this numb foot that progressed by that stage to I think to your arm other than, which is not normal to come to think of it but you were fine. You were talking you were eating you were your usual crazy self. So to me, there was comfort then.

    Bill 14:05

    Yeah. And then you had to ring my parents and tell them to come in. Oh yeah by the way Bill’s not doing too well, like, how did that go?

    Christine 14:16

    Without actually setting alarm bells. That was a bit difficult. But I think we did it together and they spoke to you and they heard you so I think they were fine about it. In the sense they came to the hospital, they saw you but look they were concerned, and it was not an easy thing to watch parents look at their son and wonder what is going on with him. But I felt better that it was shared. It wasn’t just between you and me, I felt that they had to know you’re their child.

    A false sense of security

    Bill 14:50

    Yeah. And then, the week progressed and you kept coming to the hospital. And then that was pretty cool because I was up on my feet. I was out and about I was running the show that doctors and nurses were always looking for me and were wondering where the heck is this guy. He’s supposed to be lying down. Did that give you guys a false sense of security? Because we had no idea. We’re only seven days in we had no idea what was to come. Did it give you a false sense of security?

    Christine 15:22

    It did, because I remember you said, the nurses and doctors were looking for you and you were downstairs at the cafeteria in the hospital. And I remember coming up to your room to visit you at some stage and of course, you would know a near the bed where you and I’d go, I went to one of the nurses Bill somewhere. Do you know where he is?

    Christine 15:44

    They said no, he’s missing as per usual like it was normal. I said, try the cafeteria. And sure enough, you were in the cafeteria. I think every day almost every day that I had come to see you. You were either downstairs. You’re walking around the ward, you would just not be in that bed so yes it did. Yeah, you were normal as far as I was concerned you were normal. You know, you were annoyed when they kept postponing your angiogram because they had fasted you all day and there was an emergency.

    Christine 16:19

    And then they say it’s canceled for the day, you had to have it the following day. And I remember you were very annoyed because you were downstairs again, in the foyer of the hospital wanting to eat something. So, look, there were some funny moments, I must say. But yeah, which sets this false sense of security that everything’s fine. You know, nothing’s wrong. It was a bleed. It’s a funny thing that happened, you’ll be fine. Whether I forced myself to believe that but the proof I felt the proof was there in how you were behaving and acting normal.

    Dealing with the drug side effects


    Bill 17:01
    Yeah. And then as the hospital stay ended, I came home. What was it like sleeping next to me during that time when I was on dexamethasone and couldn’t sleep and couldn’t do anything that drug was designed to help me with inflammation in the brain to save brain cells, but it had a whole heap of side effects and one of them was hallucinations. What was that like?

    Christine 17:30

    It was pretty frightening. I remember one night that I could feel you moving around and then all of a sudden you just sat upright staring ahead of you I was asking you Bill, what is it? What is it? And you would not respond you just kept looking ahead. It was pretty scary and think Oh my god, he’s possessed what’s going on with him?

    Christine 17:57

    But I did realize it was the effects of the drug and I believe it has a whole range of side effects and you probably had 80% of them every single thing that could have possibly been a side effect that you experienced some way or another. The eating, oh the grumpiness.

    Bill 18:25

    The grumpiness. So tell me about the grumpiness because there were some really serious grumpy situations right? So we’ll talk about that because really what I want to do is capture the carrier’s perspective, right? And we were a regular couple, we argue, we fight, we yell at each other, we scream at each other, and then we’re nice, we’re lovely. We’re caring, we’re loving. We do all those things, we’re kind of a little bit, you know, all over the place sometimes.

    Bill 18:52

    But there are usually underlying things that are going on that cause us to act out and misbehave. And then I’m getting better at misbehaving less and apologizing more is my aim in life. And you’re getting better as well at knowing what is something that you need to get cranky about and something that you don’t need to get cranky about what you can ignore when I’m being silly.

    Bill 19:19

    And then what you can take seriously. And then there was this situation where do you maybe want to tell the story? Because I’ve told it from my perspective a couple of times, but remember that time when I was weighing myself and noticed that I put on like eight kilos in the space of a couple of weeks, and I wanted some ice cream.

    Christine 19:42

    Yes. Okay. Well, I did. I thought we had no ice cream in the house at that time. So I went off to the, you know, the supermarket to get some ice cream for you. Me being me I thought, Okay, he’s putting on a fair amount of weight let’s go get him a diet ice cream, same you know vanilla brand that we would normally get, but I found the light version.

    Christine 20:12

    Same thing you won’t notice but it will be a lot fewer calories would be better for him. Wow. I think that was the biggest mistake I ever made because when you saw the light Ice cream you did go you were very upset to put it very mildly it was not violent or anything you were just very annoyed how dare I buy you diet ice cream? Why would I do such a thing?

    Christine 20:47

    And I just realized at that point, okay, this is not an argument for me to have with you because I realize I made the biggest mistake ever but I think I just confirmed to you that you putting on weight. I would normally just buy the normal regular ice cream, but I went and thought I was doing you the biggest favor but it was not.

    Christine 21:08

    It was the worst thing I could have done it should have just bought you what you would normally have. It would have affected you. If I think about it on so many other levels things were changing. And this was just another thing that I threw at you gave you a diet ice cream. And you were upset and it wasn’t anger. I think you were just truly upset that I would not get you what you wanted.

    Bill 21:34

    Yeah, it was I think me reflecting on it was that you decided without consulting me A and especially about ice cream and I don’t know why ice cream became the most important thing in my world at the time. But it did and when I didn’t realize it was light necessarily at the beginning. I think maybe I read it on the package. But then when I tasted it, it didn’t taste nice. And then I thought oh my god, this is disgusting. I’m not even going to eat it.

    Bill 22:00

    So I had worked myself up to eat it and then I couldn’t eat it because it was disgusting. So I thought, Nah, stuff it, I’m going to just get upset with her and yell and make the point that I don’t want you to ever do that again, make sure next time when I say give me my stuff you give me my regular stuff and there’s no you’re making decisions for me, you know? And I don’t know what made that happen to the extent that I did. But you thought at the beginning you thought I was joking. You thought I was kidding.

    Christine 22:35

    I thought it was because I thought it was such an odd thing to just get so upset about. I think, first of all, I wasn’t with you, to be honest going back to that time. You must have gone to the fridge when I wasn’t home and it began with a text message. I looked at them and wow ha ha he’s joking with me. So yes that’s right, I thought it was a joke to begin with until I came home and saw you and realized this is no joke, he’s great he’s upset.

    Christine 23:13

    And you know, I had to think I wouldn’t normally, you know, say get over at all what’s your problem it’s just ice cream, eat it or don’t eat it at all. But I knew not to go down that path. I knew that this was not right. That behavior was not normal. I thought so I let it go. I just took it on board. Okay, I’ll get you the proper ice cream next time and leave it at that.

    Bill 23:46

    Yeah I know, you poor thing.

    Intro 23:48

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

    Intro 24:18

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

    Bill 25:00

    So let’s move forward a little bit right to that time when we came home after seven days, I came home after seven days, and the prognosis was pretty good. The angiogram showed that there wasn’t going to be the bleeding had stopped. The angiogram kind of revealed that this thing was probably going to pass, it wasn’t going to bleed again. And then six weeks, we had the follow-up appointment.

    The second stroke

    Bill 25:24

    And just before that follow-up appointment, I’m pretty sure it was one or two days beforehand, I got bored and went to work on the way and while I was at work, I wasn’t working, but I was watching my employees work painting away and all that kind of stuff. And then I started to feel dizzy. And like I needed to throw up and I realized that something was going wrong. Eventually, I convinced one of the guys to pick up what it was that they were doing and bring me home because I hadn’t driven I wasn’t allowed to drive they brought me home, and on the way home I called you and said hey, I’m not feeling too well, I’m on the way home. Can you be home and be ready to take me to the hospital? So what’s it like to receive that phone call?

    Christine 26:12

    Well, I remember that day was a Friday night. So it was on a Friday that you went and it was the Monday that you’re going to have the appointment. So, to get that phone call, it was like, here we go again. But then I thought, hold on, it could just be because you said you felt nauseous. So I was sort of thinking well, maybe he’s got a stomach bug, you know, he was out there, maybe got something ate something.

    Christine 26:42

    The symptoms were completely different from the first incident, where you just experienced numbness and no actual, you know, feeling sick, or having a headache as such, but this time was different. But again, the concern and alarm bells set off. So I remember waiting for you I got in the car and waited for you to be dropped off. You know not to waste any time I suppose. And I saw you get out of the van, you know your co-worker’s van and I saw you walking across to the car and you were as white as a ghost.

    Christine 27:22

    You just look so pale and you weren’t right. Anyway, you came in the car and you said we’ll just go straight to the hospital. So we’re driving there and you were nauseous, and you kept saying that you felt like throwing up. Luckily the hospital’s about 10 minutes away. And it was Friday. We managed to get there at a reasonable time. And I remember because you just looked like in that short time you looked like you were just getting worse, you know, you were not feeling well.

    Christine 27:55

    So drove you to the front door of emergency and I said, Bill, just go in. Rather than waste time looking for a car space to leave the car and then try to walk you, it’s best to just drop you off. So I would say by the time you walked into the doors of emergency by the time I found a car space to leave the car and get back 10 minutes maybe had lapsed.

    Christine 28:24

    I remember going to triage where the emergency desk is and I said that I just dropped my husband off about 10 minutes ago. And she asked what’s his name. I said it was Bill. And she said, okay, go straight through the doors. He’s in bed. I can’t remember the bed number I went straight there so I thought that was quick that he got in there, you know right away. Usually, there’s such a long wait to get through those doors. So went in and you were lying down, I remember there was a nurse there you know, attaching things on you and getting you all ready.

    Christine 29:05

    So you well, you had just I think gone downhill very quickly. And you weren’t responsive to me even though I came to you and you seem to be like you realize that there was someone else in that room. You weren’t right. And I just had that sinking feeling in my gut that I knew this was not just a stomach bug because of the way that you were responding or not responding really.

    Christine 29:38

    And I remember at the time, the nurse, she after she attached, whatever she was doing to you put the blood pressure cuff on you and then she asked you, she goes Bill, can you please touch your chin and you looked at her and then looked at me and you said who is the chin. And I looked at the nurse and the nurse just ran out of the room and here was I left alone with you a person who did not know what a chin was and I thought, oh my god and I went close to you I remember coming close to your face and I said Bill nowhere is your chin? Where is your chin? And you looked at me so blank (inaudible) and it was the most devastating moment because I thought how could he not know who I was?

    Christine 30:38

    And I remember I just looked at you and I said, oh my god, there is something seriously wrong here. I ran out of that cubicle to look for this nurse who just abandoned me with this person who didn’t know who his chin was or what his chin was. And sure enough, she was running back with the doctor so she ran off to get the doctor because I think she realized at that point that you were not in a good place they felt something seriously wrong with you.

    Christine 31:05

    So the doctor, came running and they said we needed, to take him to CT. So in the process, it was just mayhem. You know, they’re pushing your bed out to, you know, take you straight to CT. And I said to the nurse, he doesn’t know who I am. And she said, It’s okay, we’re going to get a CAT scan of his brain. We’ll see what is going on.

    Christine 31:05

    And I remember they’re wheeling you and I had to be locked out of the room, of course, and just waiting for those moments just to find out and remember the doctor opened the door. He came to me and said, there was another bleed and is bleeding at the moment, but they said that there were it was a slow leak, but it was a fresh one. So here we go again. And I was thinking but it was never meant to happen again. They said it was rare to happen again. So sure enough, these rare things tend to happen. And he was bleeding again. And that was the beginning of the journey.

    Bill 32:09

    It was chapter two, wasn’t it? And for me, my version of that is I remember walking to the triage nurse and that’s it. And everything else that you tell me. I, it’s like their memories, but they’re not I don’t remember being in that situation. I was out of it. And I think the only reason why I kind of tell people, what may have happened is because I’ve heard it from you several times now. But then I was in hospital for three days and I honestly only remember a very small amount of those next three days. What was that like? What was it like when I was in hospital in that next three-day period?

    Christine 32:56

    Well, to me this incident felt like the most serious one because we knew it was another bleed. So we realized there was another level of seriousness because it was something that was not supposed to happen a second time. And this just showed that whatever was there in your brain was quite volatile. He had its little planning place, I guess you could say. In that time, I remember that evening. And I suppose this is the moment where I realized it was going to maybe get out ahead as well after you had your CT they brought you back. They put some drugs into you. I think they gave you a whole lot of anti-nausea because you kept throwing up and I’m not very good with people throwing up.

    Bill 33:53

    You’re the worst with people throwing up.

    Christine 33:56

    And I remember the nurse had given me one of those bags so that I could help you. I didn’t (inaudible) help you out. But I remember that you were dry reaching and I swear I felt that I needed a bag for myself. Say I could think back and laugh at it now, but it would have looked pretty funny. I’m pretty sure if anyone else was watching. And soon after that, I remember a lady came into the room and she had this clipboard with forms. And I remember she went to one of the last pages and gave me a pen and she said you need to sign here. And to this day I have I didn’t even read it. But she made me sign it so I signed the paperwork and she said this is in case you need emergency surgery.

    Christine 34:47

    So they were preparing for their while they’re trying to get in contact with the neurosurgeon that you were supposed to see for the follow-up appointment and all of that. So they were trying to work out what I guess you know, Get all the paperwork for, I suppose the possibility of having to open up yourself that night and I remember signing those documents and leaving and I said, I just signed these documents. I didn’t even read them properly and I’m a person who needs to read but under those circumstances, always forced into it.

    Christine 35:22

    And I was hoping, oh my god, I hope he does not need surgery. Not now, you know, I just didn’t feel like it was the right thing that I did. Signing them I don’t know why that’s how I felt at the time. But that night they found you a bed in the special units as high dependency unit. And I remember I was there till it was late at night by that stage.

    Christine 35:51

    And I remember the nurse said you know, he’s resting easy by that stage you were communicating with me you remembered who I was again so I think after all the drugs whatever they had given you, calms you down. Maybe even helped your brain I’m not sure if they gave you any anti-inflammatories at the time. I’m not too sure about that. But you did start to recognize that you were talking more so again, when the nurse said you know, go home and rest you know, we’re here with him all night. We’ve got your number. If anything happens, we’ll call you.

    Christine 36:27

    So I sort of felt all right. Okay, I’m leaving, because I have to go collect the boys from your parents because they picked them up from home that evening. So I remember leaving the hospital and just feeling I did know, to be honest, when I think back I don’t know. I’m not too sure what I was feeling or thinking. I just thought it was an uneasiness.

    Christine 37:00

    I thought, here we go again. But this one did not feel the same. It did not feel the same as the first one the first time, I think I was more optimistic this time around, but I did not feel optimistic because you didn’t recognize me. And I thought in those moments that that’s it I had last year, I lost you. You know, it was the same. You didn’t know who I was, you didn’t know your chin. I thought, can this just keep happening? You know, when we’ll remain that way.

    Bill 37:35

    To make you feel better, I was really good. I wasn’t concerned or worried about anything. And that’s one of the things that a lot of stroke survivors talk about like you’re in another world. You’re just spaced out there’s no fear or concern or worry or anything like that. So that comes later. That seems to set in later. Remember, I’m gonna just track back a little bit. Remember when we told my parents I was in the hospital and they got ready to come and see me for the first time?

    Christine 38:06

    Yes.

    Bill 38:08

    Remember what happened to my dad?

    Christine 38:09

    Oh my goodness. Yes, I do remember what happened to your dad. Those about two days after you were in the hospital you were upstairs in the ward. And I was supposed to come and visit later on that afternoon. But I think it was your brother who had called and said they’d taken Dad to the hospital because he fainted or he collapsed at home. I could not believe it. Anyway, they had brought him to the same hospital for an emergency. And we had you on one label in the ward and then we had you know your dad downstairs in emergency. And it was like you kidding me? You know, I think we had taken you downstairs.

    Bill 39:08

    I went for a walk. I went to find him in an emergency. And I said to him, what the hell are you doing in here? And he looked at me, and he was so upset. And I remember him telling me, you know, you need me for the first time in your life, you know, really serious stuff. And look at me, I can’t even I can’t even be on my feet. Now. Dad was in his early 70s by then more late 60s. And he was on some blood pressure medication and he would need to eat and he hadn’t eaten or something. And that made him dizzy and he fainted and he fell into the backyard. Now, dad weighs 150 kilos. That’s probably double what I weigh. My mom couldn’t lift him so they had to bring an ambulance to the house to bring him to the hospital.

    Christine 39:52

    Yeah, so that was a bit shocking because look after they did all the tests on him and it just so happened to be the fact that he had no food it was from my memory a hot day, as well. So those two things, so he had a bit of a fainting spell, but couldn’t get himself back up again. And I guess that was the most concerning thing. You know, his blood pressure was probably all over the place. But it all turned out well for him. He was discharged later that evening if I remember correctly, but it all worked out well for him. So I think it was more of a lesson that he had to look after himself and not he was so stressed and worried about you that I think he forgot to eat and do all the right things for himself.

    The second post-stroke aftermath

    Bill 40:43

    Imagine being my mum like, at the time imagine being my mum. And you’ve been there because we’re going to get to that in a minute, right? And then what was it like because I started to go on this I took the approach so I remember coming out of hospital that second time and then being a little bit fuzzy about my memory, I wasn’t able to concentrate type fatigue had kicked in. I couldn’t go back to work I couldn’t drive I couldn’t do all those things. What was it like for you to experience me being in that situation?

    Christine 41:25

    Well, see you did become pretty dependent for you to whether it was not a choice, you know, that was taken away from you. So it’s just having to do more things for you. You know, if you want to go somewhere, I will take you there. If it wasn’t me, it was your dad who would take you if you needed things, you know, your appointments. I took you to most of them if not all of them.

    Christine 41:59

    Yeah, you have to give up going to work so that was a big one that was quite hard to watch because that was taking away all just the basic driving you know driving from here to there to get milk when needed in the house. And you couldn’t do that because it wasn’t safe to do that. And I remember the frustration in you, you know, as the time went by that you just wanted to drive and I think that’s where you had had enough of the hospital that we went to initially because you weren’t getting your answers and I think a lot of it was driven by your lack of all having your independence taken away from you.

    Christine 42:50

    And you wanted answers you wanted to drive again you wanted to go back to work. You wanted us supposed life to be normal again. That was really at a it was at a standstill. So it was hard to watch you go through that I, to watch you go through it, but I can’t imagine what it was that you felt. You know, at that time, you know how difficult it would have been?

    Bill 43:22

    Yeah, stroke survivors talk about it as being a difficult time because you become reliant on other people and when you’ve been independent you don’t want to rely on other people. On reflection. I think it’s good to be able to rely on people and ask for help. But at the time, you’re mourning your old life and people are telling you this might be your new life forever.

    Bill 43:45

    And we haven’t adapted our identity to be this new version of ourselves. Our identity is still the one that was before the bleed in the brain before the stroke, what we were able to do what we were able to participate in we how we worked. We form our identities around I am, for example, that that was a painting business of mine, I was a painter. I went out and I did these things and those things, and I was a dad and I went to sports and I did all those things with my kids and I had all these ideas of what I am based around the things that I could do now that I couldn’t do them who was I what type of person was I?

    Bill 44:25

    And a lot of stroke survivors struggle with that transition. And it’s fair enough because you’ve got to give up a lot if you become, you know, severely incapacitated. If you can’t do stuff, you’ve got to give up so much. And it’s not gradual. You can’t give it up slowly and then feel like okay, I’m getting used to this new me. Just, it’s immediate, and then how the heck are you gonna deal with that?

    Bill 44:53

    So that was one of the challenges now. Part of me wanted answers then I started doing research it was started to what I do to support myself to heal my brain. I found that the best way to do that and this is what I coach a lot of people about now is to take control of the things that they can and one of the things that I did that I got a lot out of was I think my mindset was pretty cool because

    Bill 45:20

    I’ve done a lot of counseling and coaching work up until that time just because that was the kind of guy I was. But then I took I took diet was my thing I became obsessed about what went into my mouth. And I started to notice some cool results. observing that from your perspective your husband going from this place of not being able to do too much after that second incident to being able to take a lot of control back what was that like?

    Christine 45:50

    That was good to see. So with your so you were learning a lot you got on to the internet you would read anything that you know to try and find the information you know about stopping the consumption of sugar was a big one, you know, doing things that were like cutting out gluten and you became pretty obsessed with that to the point where you would, you know, maybe drill those sort of things to me and I love my sweet so that was a bit hard.

    Bill 46:24

    Sugar and gluten went away.

    Christine 46:29

    But it worked for you, you seem to become a lot clearer. And I guess it did help you on a physical level because, after that second incident, I guess you were having your very, you know, your checkups pretty often after you had changed doctors and everything. But you had cut out all of those nasty things and you had lost quite a bit of weight.

    Christine 46:59

    And if you seem, we’ll be clearer about everything that you were doing, and pretty determined to get yourself fitter and better and stronger. And I guess it gave you a sense of purpose, you know, you found something that made you feel better. And I guess, you weren’t as foggy in the brain, you know, because you, would say at the beginning that you would try and type up an email and you’ll be staring at the screen for so long and maybe type two words, something like that.

    Christine 47:35

    So you, all of a sudden, we’re able to start doing things that you weren’t able to. So I noticed a lot of that sort of thing and I guess I didn’t know where there was focusing on something that was working for you. They gave you more of I guess, the passion to follow through with it because you found something that was working for you.

    The gut-brain access


    Bill 48:00
    Yeah, you know what I found? I found something that nobody else told me about. No Doctors, no physiotherapist. And I think it was very early in the technology in the discussion in the papers that were available of the gut-brain access, the connection between a healthy gut and a healthy brain, and how to influence the healthy brain.

    Bill 48:20

    And I thought, well, like in the past, I would have had to go to a neurologist and give my life to them and tell them to tell me what I needed to do right now I can go to the neurologist for the doctor stuff. But for that other stuff, I can do it on my own, and I could prepare my brain so that it gets better and better and better as long as I can, you know. And basically, that’s what it was. And the diet was something that I was able to give up foods that I was addicted to.

    Bill 48:49

    To be honest, I think. I used to drink a can of Coke, almost every single day and sometimes more than one and sometimes more than two. And that was my go-to for everything and then so was bread, bread was 90% of my diet instead of, you know, like putting one piece of salad in there one piece of cold meat, and one piece of cheese wasn’t nutritious for me it was just you know layers of bread over bread over bread.

    Bill 49:19

    And when I got rid of that stuff, I felt like I was lighter, less bloated. My clarity came back and I discovered that what I was doing, which I didn’t understand at the beginning was healing my gut and that was helping to heal my brain. And then that was pumping me with all those neurotransmitters that endorphins and dopamine and serotonin.

    Bill 49:41

    And that was helping my brain and my mindset to become one of men let’s get focused on what I can do to impact my life. And I was also a little bit worried about the fact that I had maybe intervened in a way to make myself unwell because I used to smoke from time to time, more often than not, you know, like I used to smoke more than one or two cigarettes a day when I’ve, you know, felt like it. I used to go to the gym but not really to get fitter to make muscles so I could feel like I was a muscle man so you could love me more.

    Bill 50:20

    You know, and all that kind of stuff and it wasn’t ever about. I didn’t understand what health and well-being were. I thought that it was something that you get when you buy a program from somebody who’s trying to sell you their service and that’s about it. Right, and I get it some of those programs are a great way for people to start getting curious about what health and well are used for them and there’s a place for them, but for me, it was very superficial.

    Bill 50:47

    There wasn’t a lot of detail or depth about it. And then I started to lose weight and thought this is the first time I’ve lost weight without needing to go to a gym and exercise and pay for membership. And then it became my mantra just don’t eat gluten, don’t eat sugar. And that’s 90% of the job done. The rest of it is to eat heaps more veggies, heaps more fresh food, and less processed food, and then eat protein.

    Bill 51:01

    And it was simple, simple to do simple to follow. And it just made a world of difference. And it’s roughly, it’s basically how I eat now. And I always talk to other stroke survivors on the podcast and say something along the lines of like, I’m healthier than I’ve ever been. Even though I’m living with all these symptoms of stroke, his left side numbness and the burning sensation that I feel on my skin.

    Bill 51:19

    And then when I get tired when I get wonky and can’t walk, like exactly 100% I start to feel a little bit wonky right? So what what kind of conversations were you having with the boys though? Because I don’t remember having too many of them. Maybe they avoided it, but were you having convos with them?

    Christine 52:08

    We did. It was mostly. To be honest, I think I spent most of my time protecting them in the sense of not saying anything that may scare them. But of course, I would let them know that if you were (inaudible) incident, the second incident when I went to pick up the boys from your mother’s house that evening after you didn’t know who I was, by the time I reached your mom’s house, you know, I tried so hard before going in to get the kids to be normal, you know, not look upset or fazed.

    Christine 52:50

    Anyway, I sat down and I said hello, and of course, your mum was sitting there with the boys and she looked at me, she said, oh so how’s Bill doing? And instead of what I may have rehearsed in my mind how to approach it and say, oh, yeah he’s fine, he’s resting. I looked at her just burst out crying and said, he didn’t know who I was, well, if there was any way I could have killed my mother-in-law, that would have been the way to do it, I saw the devastation in her face, and not to mention the boys because they were in there so caught up in my own emotion, fear that I had felt when I was trying so hard to calm myself down before I go into the house. It didn’t work, you know, it just didn’t work.

    Christine 53:41

    And all I remember is your dad got up from the kitchen table and walked out of the room. I thought, okay, but then I just realized, okay, I’ve got to change this, I said, but he’s fine. He remembered me afterward, you know, try to make them feel better. But it was just all that fear. I felt my devastation and then I looked at the kids who had their eyes so open wide horrified so I think from that point I was I made myself very careful what I said in front of them and how I approached them.

    Christine 54:22

    Because of my fears, I think I’d devastated the whole lot of them and at the time maybe I needed it was my release but you know, I spent that night telling them you know, I did say sorry, while we were driving home I didn’t mean to, you know, say it like that. But Dad is a lot better now. He was talking to me before I left and he knew who I was. So that was okay. And I believe the next day I brought them there they saw you. You recognized them luckily then it was okay but yeah.

    Christine 54:59

    They were young and you know what, even though whatever we said to help them feel comfortable or not worry about it and only tell them things if you weren’t coming home because you’re in hospitals need to explain that and they were fine about it. But I do believe to this day that they have you know, the emotional baggage because of it.

    Bill 55:32

    Yeah, for sure. And they still go to counseling and they’ve been to counseling. They’ve got the emotional baggage because of it because so much other stuff happened during that time right? And you became my spokeswoman like you had to answer for me you had to speak on my behalf to everybody. My brother who’s probably not the easiest person to talk to about emotional stuff because he’s an emotional guy, but struggles to have the emotional conversation, or at least back then did more so than he does now. Then you had to tell your parents you had to tell your sisters you had to, like become like my media person. What was that like?

    Christine 56:21

    Not nice actually? Yeah, having to drop all these bombshells each time you know, but I felt it was better coming from me just let them know not to upset or stress you out in having to do it. So I’ll just say it but everything’s all right he’ll be all right and don’t worry about it that was my attitude sort of thing because I found it was hard enough dealing with my uncertainty of what was happening, to have to deal with everyone else’s worry and stress was also very hard to deal with. I knew it had to be that disconnect from it so that I could survive. I felt, you know, I would maybe make things sound better out when I told other people than what I believed myself. Just so that I didn’t have to deal with the worry, concern, and questions I had no answers for. So I guess I sort of always had a rosier twist to the story when I was relaying what was happening to others.

    Bill 57:38

    Now that I’ve got you on a podcast, I can ask you questions that I can ask you in private. I want to know like, you don’t do much talking about what’s going on in your life, what your problems are, and I’m the forever talker. I talk about everything, right? Would it be accurate to say that I’ve dragged you to counseling sessions, and we never had like marriage counseling? But we had just counseling sessions where I would involve a third person so that I could say things that I didn’t know how to say to express myself.

    Bill 58:17

    So it’s fair to say that I dragged you to those. What is it about you I’m not trying to be facetious or nasty or anything like that. But like, curiously, what is it about you that you can’t have those conversations with a third person because they’re so helpful for me, and I kind of wanted to force you to go because I thought if it’s useful for me, it’s going to be useful for you. So just go and speak to the counselor. Like, how come you couldn’t bring yourself to do that and still are reluctant I feel like doing that kind of stuff.

    Dealing with things personally

    Christine 58:53

    Okay, well, first, let me just elaborate on the point you made that you had to drag me to see a counselor well, yes, for the first one you probably did. But thereafter, I think I was a pretty willing participant because, after the first one, I realized, okay, this is not so bad. And I’m getting a better understanding of how you’re feeling about things or how you process things. So it is helpful, just to put it out there.

    Christine 59:27

    So anyone listening who is afraid to get a counsel to please go. But for me, I am a person who feels I need to process things in my mind. First, maybe whether it’s to get a good understanding of what it is that’s going on whatever the issue may be, I feel a need to process it on my own. And if I then need further help, then I’m more than willing to reach out for it, so by the time that may happen, my issues are gone, or I’ve forgotten about and I move on. So I guess that’s how I work. So I do process, I guess, internalize a lot. And I guess that’s just my way of doing things.

    Bill 1:00:21

    Is it then not accurate of me when I say stuff like that that puts you at risk of being the kind of person who sweeps things under the carpet, so to speak, and then they catch up with you later on in life? Does therefore you forget about it and move on, potentially creating that situation where later it’s overwhelmed because there’s too much stuff that you’ve forgotten about or haven’t dealt with?

    Christine 1:00:48

    I’d say in some instances, yes. I guess it depends on what the issue is that you’ve swept under the carpet. Yes, things do come up and they can bite you on the butt when you least expect them? I guess for that it depends what the problem is or what the issue is that you ignore. You know, but as I said, I try to process things in my own way my mind. And, you know, I won’t say that I’m perfect with everything because I am not. And things have come up that have come out at a later stage and I find it difficult to deal with. And it could be because I never dealt with it, to begin with.

    Bill 1:01:41

    You’re not perfect as if I’m not perfect I think I’m perfect. Why would you say that? You’re not?

    Christine 1:01:49

    Oh, no reality.

    Bill 1:01:51

    Yeah, all right. I’m not perfect either. So our stroke journey has been interesting. And then there’s a lot of people involved we’re Greeks, right? So we don’t do things on our own. I don’t have a stroke on my own. I involve the entire family. My dad collapses. A whole bunch of stuff goes on. And we kind of, we kind of take all that stuff for granted. And then as life continued to go on, I got to nearly three years, it was just before the three-year mark from the initial bleed, and it was November of 2014 when I had another blade. And in that time, if I remember correctly, everything had kind of gone back to normal.

    Christine 1:02:47

    Yeah, it did they almost became a distant memory. You know what you have gone through.

    Bill 1:02:55

    Things started to come back on board. I was back to work. You were back to work. Not caring for me at that level.

    Christine 1:03:02

    I started Uni. Remember I started my psychology course on it was May of 2014 when I started my course so is that Yeah, yeah. I thought well and well and secure in our lives that I was able to, you know, start doing something that I felt motivated to do. So yes, that was a very big year 2014 That’s for sure.

    Bill 1:03:31

    Yeah. I remember during that time, the one thing that I struggled with was the amount of time that I put into my studies you’re a great student compared to what I ever was, but that meant that I had to do more around the home and then I started to notice the fatigue and started to notice some of those issues, and I started to act up a lot. Do you remember that time as, like the way that I just described it I started to act up and kind of be a little bit more.

    Christine 1:04:01

    Yeah, a lot more frustrated with your wanted things, I guess, well organized so that you didn’t have to put too much brainpower into thinking like for you was what food would you like so I don’t have to think for you. And I’m quite easy just don’t cook me meat, I’m fine. But I was the type of person that once I got onto my computer to start doing my studies, I could have been there all day and the whole day could pass by and I wouldn’t realize that it was dinner time. So yes, you were getting pretty frustrated that I, you know, didn’t put any thought into certain things. And that was supposed to bother you quite a bit.

    Bill 1:04:51

    Yeah, and you not only that you were you’re looking after the boys. Yeah, you’re going to work you were studying, I mean, and you weren’t studying until, you know, 9 pm you’re studying until one or two in the morning, and then you were going to work first thing in the morning.

    Christine 1:05:13

    Yeah, there was a lot I did take on a lot. But I guess for me, it was something that I enjoyed. And if you’re going to do something, do it right, I guess, maybe to the point where I was burning myself out, but I loved it. And I felt more productive during the, you know, the nighttime hours when everyone else was asleep. I was able to get work done. It was incredible.

    Bill 1:05:38

    And it was the perfect distraction because you’d been through a lot. Now, a few months into that November 2014. So you started your course in May, June, July, August, September, October, and November. That’s six months later, I had another episode so I was at work, and I experienced numbness in my left side burning sensation on my left side like I was in the sun, like I’d been sunburned, dragged myself to the hospital rang you and said, Hey, I’m feeling a little bit weird. I’m on the way to the hospital. Meet me there at some point is that how you recall it?

    Christine 1:06:14

    Yeah, I think at that point you were walking towards emergency and you said I could tell from your voice that you weren’t quite right. You sounded concerned and said I’m thinking that there’s something that I’m having another stroke because I feel a funny sensation on my left side again I’m just walking to emergency. I just want to talk to you until I get there.

    Christine 1:06:41

    And I remember you said I’m at the desk. I heard a lady speak to you, you said I’m going now come to the hospital. And I thought, here we go. Take three. So it was in the morning. I don’t even think it was even nine o’clock. I remember I was having my breakfast on the couch and a Monday is my day off and I work. So it was morning having my coffee and breakfast and I got that call.

    Christine 1:07:09

    So it’s like, Alright, get up, put some clothes on and go. So I did that. And sure enough, by the time I got there, you had already done your scan and all of that. And you know, when I saw you sitting up there laughing away, I think with the nurse or the doctor that was in there. So again, you seemed it was a different experience the third time around again.

    Christine 1:07:34

    So this time, you’re a lot more alert you you were still with it. You just said you had a burning sensation on your left side. But they did confirm it started bleeding again. And it was just unbelievable. And I remember the doctor was looking at your results on the computer and I said I’ll look he goes come and I’ll show you where the bleed is and it was pretty obvious when you saw the imaging It was back.

    Christine 1:08:01

    And I said, oh, that’s interesting because I’m doing psychology and we just finished the neuropsych. And it was, you know, all the structures of the brain. And it was here we go, an actual tutorial right there in front of me. I mean, did not need my own husband’s brain there. But anyway, it was just another blow, because, at that time, I thought we had it behind us. I honestly thought that you were fine.

    Christine 1:08:36

    That it was almost three years. No incident, you felt perfectly fine. I mean, wasn’t it the day before you went on a bike ride? But I’m not even sure how long but you had a really yeah. And you were probably at your fittest, strongest time and then it happened again. So now, it doesn’t discriminate. It doesn’t matter if you know how good you think you are or how you feel it can happen at any stage.

    Bill 1:09:07

    Yeah. And then you have to tell everybody again. And we went through that whole process again.

    The loss on top of the 3rd stroke


    Christine 1:09:12
    Yeah. And that was hard. But again, it was just a normal conversation. And I said, you know, Bill’s in hospital again because it’s bled again. And I remember hearing my mom’s voice and she said, you know, she was saying is he alright? I said, Yes, mom. But I think this time he has to have surgery. And she said I would rather die than have anything happen to him. I said Mom what are you talking about? He’ll be fine.

    Bill 1:09:14

    And you had to tell you’re mum.

    Christine 1:09:52

    But five days, later she died and it was the hardest thing to do after obvious experience but had to deal with what was happening with you I had to deal with the loss but in a way, I think because all were grieving for my mom that what was happening with you just fell almost became I don’t know if numb are the right or appropriate word for it but it just sedated my feelings towards what was happening with you, it made the impending surgery that was scheduled for two weeks later or something like that. As though it wasn’t happening to us.

    Christine 1:11:20

    So the thing it felt was like a total disconnect. You were there with me throughout the whole journey and it made it feel that awkward to cope. Believe it or not. Mourning my mom made me feel that I could cope with you and what was happening with you. I think I didn’t put so much effort into thinking or worrying or stressing about you because not only was I morning my mom, but all of a sudden became a carer to my dad.

    Christine 1:11:58

    So I had to You know, myself and my two sisters had to care for him and because my mum was his full-time carer. So I had concerns for my dad. So they seemed like the most immediate things like I honestly thought, oh my god is my dad going to survive this, how’s he going to survive the loss of my mom there was all that focus there dealing with the funeral dealing with everything that and it was not until I think after the funeral that I had to put some thought towards you.

    Bill 1:13:08

    I couldn’t feel my face. My eyes started to play up. I couldn’t see with my left eye. I said maybe we shouldn’t go home and we were on the way home to my parent’s house. They had cooked some dinner. We were gonna go there we had to ring them and tell them we’re not coming. And then and then we’re sitting there and it probably was the first time I got scared because it started to affect my eye and my vision and it was a little bit more weird.

    Bill 1:13:51

    And I was fully conscious. There was no spaced-out or any of that stuff. And it was freakier than anything I had experienced. Previously. And I remember sitting there and while we were sitting there, at one point I forgot while we were waiting to go back through the emergency back into hospital because, of course, once you’ve left all those people doing all those tests that’s got nothing to do with admitting people.

    Bill 1:14:22

    We went back to emergency and told them what the issue was they told us to wait and there was this time when I did forget about your mum’s passing the stroke or my issues. Do you remember when there was? It was when I sat down. Next to somebody whose mum had looked at him and said, Did you wash your hands after you went to the toilet and he was touching the chair that I was touching. And all of a sudden, I had forgotten everything because I think he was an autistic boy and he must have gone to the toilet and not washed his hands. It was just I got up and walked away and I completely forgot about everything. After that brain surgery was nothing. I was touching the chair that potentially could have had other stuff on it.

    Christine 1:15:11

    Yes, remember that I was more concerned than you were making it obvious for the kid and didn’t want the kid to feel uncomfortable because this man just got up out of nowhere after the mother said what she said oh my god.

    Bill 1:15:26

    That was one of the funny things that happened. But before that, I was really upset because, at your mom’s funeral, I realized that she said that, and she had made this most amazing gesture, and then I felt like she did sacrifice herself for me. And I thought, My God, that’s just the most unbelievable thing. How can you make such a statement and then come true? It was far from being flippant, I felt like she did something for me and I had to repay her.

    Bill 1:16:04

    And this is part of what I’m doing every day and living this, you know, the stroke recovery journey and then sharing the knowledge and then having the podcast and coaching stroke survivors like that is as a result of what everybody has done for me but most importantly your mom’s sacrifice how I feel about it, you know?

    Bill 1:16:25

    So I was really upset because I couldn’t be a pallbearer that wouldn’t allow me to put myself in a situation where pressure from lifting anything would potentially make another bleed. So I had to sit that out. So that was a really tough time for me. I know it was a tough time for you. But then we had to go to surgery we had to prepare for surgery. And that was how many days do you remember how many days after your mom’s funeral?

    Christine 1:16:57

    It was close to two weeks. After about possibly less than that, so it was soon after, at least over a week. we’ll just say, close to two weeks after that.

    Bill 1:17:16

    Yeah. And then I went into surgery and we went into the pre-op, I was the first cab off the rank, so to speak. I was going to have my first surgery for the day.

    Bill 1:17:27

    I had a cool conversation with Kate Drummond, my neurosurgeon and, she had a whole team there, and she was quizzing them on. Okay, so where’s the entry point? Where are we gonna go into this guy’s head from when I was there you were listening? And then for the guy that she asked. He said that we’re gonna go in from one angle, and it was the wrong one. She said no you idiot and she started to yell.

    Christine 1:17:58

    But I’m sure that we’re just I don’t know, God I hope she doesn’t normally her younger doctors, but it was, I don’t know whether it was done to relax us or make it a bit comical. But all I remember is, oh my God, do they know what they’re doing? Are they going to do it right? Then I thought surely not as if they would anyway we know that they didn’t do it right and they did a wonderful job.

    Bill 1:18:29

    Did you find that you had any concerns about me going into surgery so we had just been through your mom’s funeral, Did you have any concerns? Was any of that on your mind?

    Christine 1:18:40

    It was. I mean, it was a very busy morning, and being with you I wasn’t going to put any of my fears on you. But all I remember is there was a certain point that I could be with you and then I had to go because it was very early in the morning. Cuz you were one of the first ones there, I think I probably went down to the cafeteria, it was maybe about 7  a.m. or something like that.

    Christine 1:19:09

    So I thought I might as well have something to eat. At that stage, I think I was eating very little, or probably food was not something I needed or wanted, but I thought I’d got a whole lot of time to kill because they said it would be quite a few hours before I got to see you. So I remember going to get a coffee and some of the toast and just sitting there eating and you know, almost fighting my thoughts because I did not want to think about anything.

    Christine 1:19:39

    And I mean anything, not my mom, not you just wanted a blank mind. Because I needed to survive those hours. And that’s what it was it was survival. So I ate and I remember just walking around the hospital and I found a chapel that was in the hospital, just the chapel room. Okay, just go in there. It just seems such a relaxing serene room. There was no one in there. But there were chairs and I had some books in there. I thought you know what, I might just sit here in some peace, you know?

    Christine 1:20:20

    And I did and I was there for a bit of time I picked up a book I was just reading, and then all of a sudden, I think it was about 9. You know, I think I killed a bit of time, about 9 am some people started coming in and there were nuns, and they all coming in and they’ll putting chairs around setting up the room. And I remember one of them coming up to me. They said, oh, I hope you don’t mind but we’re just setting up for our morning mass.

    Christine 1:20:47

    And I thought, Oh, no, that’s fine. And then they invited me to join them. I thought, okay, since I’m in your space, I’ll sit in your circle too. So I sat there with them and I handed out I think it was prayers. And we just started the morning prayer and I was so I believe in God that I can’t exactly claim that I’m very religious.

    Christine 1:21:18

    But let me tell you, it got me through the morning, being in that space and hearing them you know when they’re prayers, so I guess it’s something that they do each morning. I’m not too sure didn’t quite ask. But I remember one of the opening prayers was a prayer for all the patients that are in the hospital for everyone that works there and for the surgeons and to God bless they hads so that each surgery is a success, something along those lines and I just go oh my God, yes, please, please bless they’re hands, you know.

    Christine 1:21:59

    So I think it went on for about half an hour and I remember at the end when it all finished one of the nuns came up to me and she asked me she said why are you in here? You know, why are you here this morning I said that my husband’s in surgery at the moment and I remember she knelt and got my hands and just started praying for you and they did give me strength and I thought you know what he’ll be all right and she just said that you know that I pray for his healing and for everything to go well and I just felt like I needed it. And I guess you needed to we all needed it.

    Christine 1:22:43

    So anyway, then I thought okay, it was getting closer towards you know, the surgery to hopefully start winding up so I went up to the space where the level of the surgery where the level that you would have been I found some couches there. There was a waiting area. So I just waited there for some time, I thought the doctor would call soon enough to let me know that it’s you now that it’s finished. So I just sat there.

    Christine 1:23:11

    And then those thoughts started coming into my mind. I thought, what if it’s not successful? You know, what if he doesn’t make it I never allowed myself to think and not know how that thought managed to get into my brain, but it did. And all I remember was thinking, no way my mom would not want him dead there’s no way and I had to stop it, whether it’s real or not, you know, we all know bad things can still happen.

    The surgery was a success

    Christine 1:23:42

    You know, two bad things have happened already. But I had to your mind does funny things, whatever it is to help you get through it. And I just put that thought aside and I thought they’d contact me soon enough and actually, it wasn’t too much longer when Dr. Leon did call and said that the surgery was a success and that everything went well. And then they’ll go in to send you to recovery, you know, to the high dependency unit. And the nurses will call me when they’re ready, you know, to have you there and I said oh my God he’s alive. And then that’s when I felt the relief.

    Bill 1:24:29

    Yeah, that was pretty cool. Waking up being alive after brain surgery. Let me tell you, having you guys there was nice and all that. And I realized that I had to learn how to walk again. So that was probably a few days later. But in that time in my recovery, you got finally fed up with all of this thing being about me and you had to make it about you. So what would happen now if it’s not my dad doing weird stuff to make it about him when I’m unwell like somebody else has to take my limelight? What happened to you? After I woke up from surgery was a couple of days later?

    Christine 1:25:13

    It was a few days later, it was probably about four days later. Not right away. I didn’t want to take away the limelight from you immediately, just a few days later. Oh, what happened? Well, it started as a normal day and I believe it was a Sunday and I came to visit you as normal. And I remember it was between 12 and two when they wanted the patients to rest in the neurology unit. So I thought I’d just go for a walk. So went for a walk towards the market. I remember walking it but it just turned out to be quite a hot day.

    Christine 1:25:53

    I wasn’t prepared with any water or anything of the sort and it was probably well two hours is the time that you rested for I’d say about two hours of walking with no word and I remember towards the end I thought all my mouths a bit dry so when I got a small bottle of sparkling water that I sculpt quickly, and then continued my journey back towards the hospital.

    Christine 1:26:19

    I remember that day you had a friend come to visit you we brought you down to the cafeteria so you could sit with your friend you didn’t want to be in the room you wanted to be with, even with your head open. you thought, let’s socialize downstairs in the cafeteria. So we went down there.

    Bill 1:26:37

    In the wheelchair, I got pushed out.

    Christine 1:26:38

    Yes, with the wheelchair and we’ll sit there you having a conversation, and all of a sudden I can see the room blacking out. I felt dizzy. And I could feel myself just moving to the side and I said Bill I’m not feeling well. And I remember your friend had some peppermint tea or something. In the water, and he just gave me some to drink. And that sort of helped me and I try to breathe in and breathe out. And I just felt my heart palpitating It was not a pleasant experience, but then it passed. Anyway, we continued. Then we went back up, and I think you had another friend visit you.

    Bill 1:26:39

    I think it was Louise was it Louise at the time, maybe?

    Christine 1:27:09

    No, it was the girl that did the marathon. The other.

    Bill 1:27:33

    Donna Campisi, had a stroke when she was a kid. She was on one of the early podcast episodes around Episode 22 or something. And she had a she had a stroke, and she ran a marathon with foot drop. So she’s an amazing girl. Yeah.

    Christine 1:27:52

    So you were talking and I was just sitting there and again, I started the same sort of feeling, feeling a bit dizzy. So that happened, but then I regained it because I had some water next to me. So I drank because I felt the water was helping me. And then it happened again and each time you pushed your buzzer to get the nurse, the nurse thought there was something wrong with you. And you said, No, No, I’m fine. But someone has to help my wife. She gets fainty. And I thought and they said we can help her here but I remember they sat an orderly or someone with a wheelchair and they wheeled me down to emergency.

    Bill 1:28:35

    They ran a whole bunch of tests to work out what was wrong with you. I remember so vividly. And I’m not sure who pushed me down to the the area where you were but I ended up being in your little cubicle where they were looking. And I remember quite vividly, like just looking at the cubicle in the corridor and then this doctor comes past Doctor Leon, who was part of the surgical team with me only a few days earlier, he looked at me and he kind of thought, I remember that guy’s head type of thing.

    Bill 1:29:08

    And then he looked further around, and he saw you laying on the ground and he goes, What’s going on here? Then I said to him I don’t know something’s wrong with my wife, you know, she’s lying down here. And he was concerned. And he said, and he asked a few questions to try and work out what was going on. But what you had done was neglect yourself like my dad had done. And you had started to faint because you were low in.

    Stroke carers tend to neglect self-care

    Christine 1:29:35

    Potassium. So basically, I was dehydrated, as simple as that. But that caused a lot of havoc in me where my heart was, my heart rate was extremely high. But they ruled out any heart issues because I was on the ECG. The test showed that I was very low in potassium, so I had more potassium they gave me food, which I was quite fussy about because I don’t eat meat, so they brought me meat.

    Christine 1:30:04

    So that was pretty funny. And I remember the young doctor, she looked at me and I sort of told her what I was experiencing. I think I almost made her cry when I told him what was happening. And she said, but you’ve got to make sure you look after yourself. You need to eat and make sure you drink, you know. And, then I thought I was, but you just don’t think, as I said, That’s why I keep saying, I just had to survive each day. Whichever way, however, I could manage it, I did it. But then that scared me because I thought if anything was to happen to me if I neglected myself, anything would happen to me as well. What about the kids?

    Bill 1:30:52

    Yeah, they would have done it tough. And I remember my parents coming to visit me that day, and then again, not finding me and then being brought down to you and then having to explain to them why you were there. And that it wasn’t that serious was only dehydration but it’s such a difficult thing to do.

    Christine 1:31:13

    Yeah. I know it was hard. It was hard and I remember lying there on the bed and with your mom because your mom wouldn’t leave. But just looking at her face and the worry. And I was trying to say it’s nothing. It’s nothing, don’t worry about it. But at the time, I wasn’t feeling that it was nothing. I just felt that everything was I was losing control of everything.

    Christine 1:31:41

    That’s what it felt like and because physically I was losing control, I couldn’t control myself from sitting upright, you know, my body was leaning, you know, to the left. It was insane. You know, all I had to do was make sure I drank some water or had some food but I didn’t even think to do that. Yeah, but I made sure I did after that, that was a lesson.

    Bill 1:32:08

    Yeah. And then I went to rehab and how were you with the fact that I wasn’t going to walk straight away that I needed to learn how to walk again and use my left arm?

    Christine 1:32:24

    You know, honestly, I was grateful you’re alive, and that you were able to move whatever you could do. But I don’t think there was a moment that I didn’t believe for a moment that you wouldn’t be able to, because I know who you are. You know, you’re a pretty determined person. I mean, you couldn’t drive and you’re angry because you couldn’t drive a car when you wanted to. There is no way this guy is not going to walk.

    Christine 1:32:52

    Looking might not be perfect at it. But I was quite certain that you would you know I don’t think I allowed myself I was pretty good at stopping those negative thoughts from entering my mind, they may have entered. But I stopped them from continuing. So I had to because I think it can become a very dark place if you focus on if things weren’t to work out the way you would have hoped. And I took one day at a time, you know, and every day you did improve, and to me, that was amazing. That was amazing.

    Christine 1:33:42

    Compared to, you know, day one after the surgery, when you’re hooked up to machines, and, you know I guess a lot of it would have been the effects of the drugs that you were not responding to although you were you weren’t at your full capacity. So I always thought it was the drugs. It’s all of that. But yes, you fell out of bed and you know when they thought that you would be fine at walking, but you weren’t.

    Bill 1:34:12

    That was rough. That was me trying to go to the toilet for the first time after surgery and getting out of bed, stepping on my left leg, and then like fresh out of surgery ending up on my bum. On the floor in the ward. That was pretty scary for me. You guys weren’t in the room. But then also in recovery. They did that chest scan and they found a lump in my throat you remember what that was like?

    Christine 1:34:38

    Yes. Honestly, how much more can you possibly throw at us? I thought there was more like it wasn’t they didn’t say it was a lump. It was more like you had a deviated windpipe and they ran in they said can you breathe? Can you swallow? And I’m thinking why are they asking such questions? But they had done a chest scan to make sure you did not have pneumonia or something that made sure that your lungs were clear.

    Christine 1:35:07

    Instead, your lungs were clear, but they found that your windpipe and I think your esophagus were all deviated because you had a giant goiter that we never knew about. And remember the doctor said, have you never noticed a lump in his throat? I said, no, never. It was just unbelievable.

    Bill 1:35:28

    Yeah, you hadn’t noticed that? Neither had I there was that lump the size of a golf ball in my throat and I had never noticed it.

    Christine 1:35:35

    It was inwards, the goiter that came out.

    Bill 1:35:40

    Yeah, so that was pretty, nuts. Going through all of that. I finally went home and let’s fast forward like we’ve been through a lot. But then now it’s May of 2020. And there’s been nearly there’s been six years nearly beyond the surgery, November this year will be six years beyond surgery and things are pretty good.

    Bill 1:36:08

    I can’t complain about anything. And I’m so grateful to have had you the most amazing, caring, compassionate person that I know even though I get cranky at you and yell at you and, you know, we do the husband and wife stuff like the truth is that it’s a team effort and I probably could have done it without you but I don’t think I could have done it as well as I had without you because you took some of those other things that you made your responsibility and you ran with those and that meant that I could focus on my stuff. And I think I hit the jackpot You know, when I met you all those years ago and decided to.

    Christine 1:36:54

    I’m glad you recognize that.

    Bill 1:36:58

    Decided to make you an honest lady and I can’t thank you enough I love you. And, now I’m lost for words.

    Christine 1:37:12

    Well, I love you too my darling. And I’m glad you’re well just keep it that way. Please. No more dramas, no dramas.

    Appreciation for stroke carers


    Bill 1:37:22
    You too. This has been one of the most amazing episodes, it’s so good to interview you and get an insight into what a stroke survivor carer goes through because it is, you know, just as traumatic I imagine for the carer as it is for the stroke survivor, the patient and at the same time that I’m going on my crazy journey of illness and you know being unwell and all that sort of stuff you’re going through all your normal life as well as the hurt and the challenges of losing your mom and all that kind of stuff dealing with the children.

    Bill 1:38:03

    And you almost have to put a backseat, you have to put everything on your plate aside and just deal with somebody else and be selfless. And I think, hopefully, stroke survivors will get an appreciation for the carer the person who’s helping them out. And also, hopefully, carers will get an appreciation for the fact that they’re not alone. And that we do think of them and that we do feel for them. And we want to acknowledge them. And I want to say thank you, to you and them. Because stroke survivors can’t do everything on their own. So you did a great job. You still do a great job and, thank you.

    Christine 1:38:46

    Thank you. Thank you for having me.

    Bill 1:38:50

    Yeah, thanks for being on the podcast.

    Christine 1:38:53

    Awesome. Maybe we can do podcast number 200 together.

    Bill 1:38:59

    Absolutely. I would love to do that. Looking forward to it. That’ll be fun. Thank you for being the most special guest on the podcast and all the other guests have been amazing, but you’re the most special.

    Christine 1:39:11

    Thank you. You’re pretty special too.

    Bill 1:39:17

    See you in a second.

    Intro 1:39:20

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post What It’s Like Living With A Stroke Survivor – Christine Gasiamis appeared first on Recovery After Stroke.

    1 hr 40 min
  • Ischemic Stroke Recovery At 32 – Kelli Geuting

    Young Stroke survivor Kelli Geuting experienced an Ischemic Stroke at age 32 the origin of which remains unknown. Learn what Kelli did to help heal her brain after the stroke and how her stroke recovery is coming along.

    Instagram: www.instagram.com/kelliegeuting/

    Highlights:

    00:54 Introduction

    04:20 The first symptoms
    11:58 Couldn’t figure out what caused the stroke
    14:41 Oral contraceptives may potentially cause a stroke
    21:31 The deficits after getting out of the hospital
    32:32 Negative mindset
    41:32 Stroke recovery timeline and expectations
    53:22 Trouble navigating anxiety and acceptance
    01:01:41 The stroke recovery diet
    01:10:24 What’s in store for Kelli Geuting

    Transcription:

    Kelli 0:00

    Honestly, I struggled, in the beginning, a lot with the fact that it was an ischemic stroke and that it was not explained by anything aside from there was a blood clot, and I think that we hear so many, like, there’s so many negative connotations around developing a blood clot and as a therapist, you know, I admit that I probably had my negative connotations about it. And preconceived notions and I think that it was, hard to think about how other people would think of me.

    Intro 0:46

    This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.

    Introduction


    Bill 0:54
    Bill from recoveryafterstroke.com. This is Episode 99 and my guest today is Kelli Geuting. Kelli experienced an ischemic stroke at age 32, the origin of which is still unknown. She’s well on the path to recovery and in our chat, Kelli shares some insights into her approach to help heal her brain after the stroke.

    Bill 1:15

    Just before we got started some time ago, I launched recovery after stroke coaching. It’s helpful for people who feel like they aren’t getting the support they need once they’re sent home from the hospital. If you have fallen in the cracks between hospital and home care and desire to gain momentum in your recovery, and do not know where to start, this is where I can help.

    Bill 1:36

    I’ll coach you and help you gain clarity on where you are currently in your recovery journey. I will help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal.

    Bill 1:52

    Right now for everyone interested in learning what recovery coaching is about you will get a seven-day free trial. To decide if it’s the right fit for you. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube or by going to recoveryafterstroke.com/coaching, if you are listening online.

    Bill 2:16

    Finally, if you love the Recovery after Stroke podcast and you think it’s helpful, please share it and tell others about the podcast so that they may benefit too. If you’re watching on YouTube, please give us a thumbs up and leave a comment. I’d love to hear from other stroke survivors and I answer all comments personally.

    Bill 2:37

    You can also go to iTunes or your favorite podcast app, and also give us a five-star review there. That’ll help search engines find the show better and put it out to more people. Also, if you’d love to connect with me on Instagram, just go to Instagram.com/recoveryafterstroke or facebook.com/recoveryafterstroke, and just send me a friend request.

    Bill 3:04

    Oh, and one more thing, I wanted to let you know that you can also download all the words of each episode as a PDF. It’s perfect for you if you prefer to read and take notes or highlight different parts of the interview for future reference. It’s a great way to learn and it helps retain new information to memory. Just go to recoveryafterstroke.com. Click the image of the episode you just listened to, and at the very beginning of the page, you will see a button that says Download transcript. Click the button, enter your email address and the PDF will begin download. And now it’s on with the show.

    Bill 3:44

    Welcome to the podcast Kelli Geuting.

    Kelli 3:47

    Thank you. Thanks for having me.

    Bill 3:49

    Yeah, thanks for being here. You’re very active I’ll call it our community in Instagram land and your page says that you’re a proud stroke survivor. And I love the idea that you can be proud of your stroke, survival, your journey, whatever it is that you’ve been through. Tell me a little bit about what happened to you at the beginning.

    The first symptoms

    Kelli 4:20

    Yeah, it’s taken some time to get to that point for sure. And so I think it’s important to kind of go back to a little bit before the stroke and who I was, you know before everything happened because it played a big role in how everything played out. So I am originally from Delaware which is on the east coast of the US and I am a physical therapist, and my husband is in the military.

    Kelli 4:51

    Which is why right now we are stationed in Hawaii. So it’s just my husband and I and my dog and both of our families live 5000 miles away in Delaware. And we’re in Hawaii and my husband is gone for work about 50% of the time. And so quite often, it’s just me, and he’s gone at work. So that kind of has played a big role, in my recovery and the whole process. And kind of, I think some things that I’ve had to go through which have forced me to be a little bit more independent because I’ve kind of just had to.

    Kelli 5:40

    So knowing all of that, the day the stroke happened was December 3rd, 2018. So we’re coming up on a year and a half, not quite a year and a half. It was Monday morning and I’d just woken up to go to work. I was working in a physical therapy clinic on our local Air Force Base, working with active duty and retired veterans and outpatient clinic so I had just woken up to get ready for work.

    Kelli 6:16

    And as soon as I woke up that morning, I was hit with this wave of dizziness. And it was immediate as soon as I rolled over in the bed, I had never felt anything like that before in my life. It was strange and alarming, but I was kind of like alright, I’m, I’m busy and, and, and so I tried to get out of bed and I was immediately nauseous and vomiting.

    Kelli 6:44

    So I knew that I was sick didn’t know at the time how sick or what was going on. My husband was home that morning, but he had to leave his The boat that he was stationed on was going on patrol for a week and they were leaving that morning. So he got me, you know, all settled, I assured him that I was fine. And that, you know, I was just sick, I probably just had a virus or something strange.

    Kelli 7:17

    And I assured him that I wasn’t going to go to work that day, and then I would be fine. And, and he, you know, stayed as long as he could, but then he said, Okay, I gotta go and he left and was going to be gone for a week. And so that day, I stayed on the couch all day long, and the dizziness never subsided. And so I went in and out of sleep and I would sleep for a while and I would wake up and I would try to stand up and I would get sick again.

    Kelli 7:52

    So it was just like, I’m pretty relentless all day long. And then at the time because you know, I’m a physical therapist, your mind starts going as to okay what, what could this be? Why am I experiencing this dizziness and nausea I thought that I was experiencing vertigo. And so it really, I have never had vertigo myself, but I have treated other patients who have had BPPV and so I assume that that is what the problem was.

    Kelli 8:31

    Naively I was kind of annoyed at that thought because I was like, Man, this could knock me off my teeth for a couple of weeks like this could be annoying. And so I just said, you know, I’m gonna sleep I’m gonna do you know, whatever I need to do. Fast forward to that evening, I had been sleeping all day long because I couldn’t do anything else and then that evening my husband called me to see how I was doing and he let me know that the air conditioning on their boat had broken so they were coming home unexpectedly. I was relieved at that point because I’d been pretty sick all day and I knew that something was going on.

    Kelli 9:19

    And I was relieved just that he said he was going to be home. And so he came home a couple of hours later and saw how sick I still was, and pretty much insisted on taking me to the hospital. At the time, like, I just needed to go to bed. It’s not that serious. I just, all I wanted was sleep. I just wanted to go to sleep.

    Kelli 9:48

    So anyway, we kind of argued about that a little bit and then I ended up giving in and he took me to the emergency room, and by the time I got to the hospital I couldn’t walk anymore. I couldn’t lock myself into the emergency room. And so he had gotten a wheelchair and you know, gotten me checked in. And I can feel at that point that my symptoms were progressing.

    Kelli 10:16

    When I look back on it now I can see, you know, all of the red flags, but in the moment I just knew like, I just feel so sick, like I just want to sleep I want to lay down. And it wasn’t until that night, I waited in the waiting room in the emergency room for a couple of hours and I was progressively getting more sick.

    Kelli 10:41

    And eventually, they took me back and started two different testing procedures. Once they did the CAT scan of my head, at that point, things started moving rather quickly because they were already able to see the stroke in the CAT scan. So, I had a CAT scan, and then immediately after that I had an MRI, which they were able to visualize that I was having a stroke the MRI, initially diagnosed it as a dissection of my vertebral artery.

    Kelli 11:20

    And it wasn’t until I believe it was the next day that the neurosurgeon came back and said, You know, we’ve looked at it more like I’ve looked at the images more, and I don’t think it was a dissection. I now believe it was an ischemic clot, that completely occluded your vertebral artery.

    Bill 11:43

    So how old were you at the time?

    Kelli 11:47

    32.

    Bill 11:48

    32, and you had an ischemic stroke. And was there an underlying cause now, have they been able to determine the underlying cause?

    Couldn’t figure out what caused the ischemic stroke

    Kelli 11:57

    No, no, and that is getting easier I guess to kind of digest that information with time as time goes on when it first happened, that was the biggest priority was trying to figure out why it happened. I did not have any medical history whatsoever. I’m 32 years old, perfectly healthy, and my family’s healthy. I’d never had any kind of other conditions that would have brought up possible risk factors.

    Kelli 12:39

    And in the end, my neurologist said, you know, you were on oral contraceptives at the time. That could have been the cause. It might not just be in case, don’t take that medicine anymore, and it probably won’t happen again. Yeah, so that was difficult to deal with but at the same time, I didn’t have an exact reason as to why it happened. That is really what spurred me into it. Okay. I don’t know why this happened. So I’m going to make it my mission to now live the healthiest life that I can live. So that you know, I can do anything that I can to maybe hopefully prevent it from happening again.

    Bill 13:38

    Yeah, well, you seemed like you were seriously fit anyway.

    Kelli 13:43

    I wasn’t, I was not seriously fit.

    Bill 13:46

    Oh, that’s right. Yeah, no, you’ve got some serious before and after you’re seriously fit now. But you might not have been in the past.

    Kelli 13:54

    I was not in the past. No, I was very much in that. I like to say I got married, and I tried to keep up with my husband in terms of going out to eat and you know, definitely gained some weight during that time. And it had not caught up to me to the point yet of having any other medical conditions. I didn’t like I wasn’t overweight to the point where I had high blood pressure or heart disease or anything. I mean, I was only 32. So it very well could have caused issues later on. But you know, none of that caused the stroke.

    Oral contraceptives may potentially cause a stroke

    Bill 14:41

    Yeah, it’s pretty dramatic that a 32-year-old can have an ischemic stroke and not have any real underlying causes. And then there’s a little bit of potential that maybe the oral contraception that you were taking, maybe contributed to that. There’s a lot of discussion about that on the internet about the possibility that oral contraception may, for some people cause an increased risk of stroke.

    Bill 15:08

    But, you know, I think most people don’t look at the small print on the packet of something like an oral contraceptive, you know, to make sure that cause something else they are taking it because they want it to achieve a certain outcome. And it usually does. And you don’t look back on it, you don’t reflect on it until something else happens.

    Bill 15:34

    And this is the challenge. And one of the issues is that I think doctors lack a little bit of time, patience, and energy. They don’t put that into really seriously explaining to people what they’re getting into. I remember having a coaching client a couple of years ago who was taking an oral contraceptive for medical reasons not associated with pregnancy not associated with trying to avoid pregnancy, but she was taking that for about six or seven years.

    Bill 16:11

    And at the six or seven-year mark, we started talking. And when she told me about all the different things that were going on in her life, and she mentioned that I asked her about it. And she told me that she was taking it and had been for such a long time. She doesn’t know whether she should still be taking it because she hasn’t followed up enough times with a doctor to work out what the next step was.

    Bill 16:34

    So she kind of started this thing, and then it just continued forever. And then when I asked her, don’t you think it’s about time you spoke to your doctor to get a bit of a follow-up on your condition and to say whether or not it’s run its course and whether you guys have resolved it? And she kind of said, Well, yeah, I think so. And eventually, she went, a week later, she went to the doctor and he said, yeah, you don’t need to take that anymore.

    Bill 17:01

    And it’s just crazy that people do things for such a long time. And don’t have the insight or the foresight or they don’t have the curiosity to just go back and ask. And then I also think it’s just as bad and probably worse that the doctors who put you on this stuff don’t at some point go. I wonder what this lady is doing. You know, is she still doing that? Is she still okay, what’s happening, there’s no follow-up, you go there, you get treated, and they never speak to you ever again. There’s never any follow-up. It’s just crazy.

    Kelli 17:38

    Right, and I mean, in most cases, you know, the doctor will ask you, okay, are you still good on this medicine? Are you still happy with it? And if you’re not having any complications then why change it and, and, you know, I think a lot of us, me personally like, I only read that it would be, you know, that it would possibly increase your risk of having a stroke that’s written on the fine print, just like any other medication you take has potential risks and side effects.

    Kelli 18:12

    Now when you see the commercials on television or whatever, you know, new medications out there, they say, it may cause this this this but in most cases the reason that you’re taking it outweighs you know, the small chance of that possibly happening. And so, you know, I think in all cases, hindsight, is 20-20.

    Bill 18:38

    How long did you spend in the hospital?

    Kelli 18:45

    I was in the hospital for ten days, I was in the ICU for three while they were monitoring the swelling in my brain and trying to determine whether or not I was going to need to have any surgical intervention, which I did not. So the swelling in my brain stopped. So they moved me after three days from ICU to a regular medical floor and I was there for another week. And then I went from there to an inpatient rehab facility. And I was in rehab for just sort of three more weeks. So it ended up being about a month total I went home on New Year’s Eve, just before the start of 2019.

    Bill 19:40

    Wow, that’s so cool. That’s a great New Year’s Eve. You probably didn’t celebrate the same way that normally would happen would that be right?

    Kelli 19:49

    It was a little different, (inaudible) I took a nap but yeah, it was important. To me to be able to start the new year at home. It’s something that you know, I had talked about with the doctor as you know if, if I’m ready to go that would be a goal to be able to get home by that time. Because, you know, I was already spending Christmas in the hospital. You know, it would have been nice to spend New Year’s Eve at home and just, there was just something kind of celebratory about getting to start that year. at home.

    Bill 20:36

    Yeah, I love it. I love it. I got to go home on Christmas Eve. So I had the same experience, you know, to be home for Christmas Eve was a real big deal. A really big milestone, and it was there’s no better way to celebrate Christmas than to be out of the hospital fresh with a scar on your head and all that kind of stuff, but still at home with the family. So, everyone, I think everyone came over. And it was just a real sort of chill Christmas. But it was so good. to not have to do that in the hospital and bring everyone to the hospital. It wasn’t going to be fun. Tell me about what did you did you experience any deficits after you came home that you had to recover from or that you’re still currently recovering from?

    The deficits after getting out of the hospital

    Kelli 21:31

    Yeah. Okay, so as I was in the hospital it was kind of a strange experience for me because you know, everything you read in the textbook is when something happens all at once as you lose, you know, the textbook tells you you’re going to lose your feeling all at once or you’re going to lose your motor control. All at once.

    Kelli 22:01

    In my experience, it happened my loss of function happened very slowly throughout the first night that I was in the emergency room. So when I went into the emergency room, I was still able to move all of my extremities. I still had sensation, I still was able to walk, I was losing, I needed help to walk, but I could still stand and do it. And then by the next morning, I no longer had any muscle activation on my left side, I couldn’t wiggle my fingers and my toes, and I had a very, very minimal sensation on my left side.

    Kelli 22:43

    I also had a double vision at that point and my proprioception, when your proprioception goes, was a strange feeling. You know, the doctors would come in and do their neuro taxed and they would hold your arms up and ask you to hold it and they would leave the room and I would ask my husband, my arm still up in the air, like Where, where, where’s my arm like I could not tell where it was unless I looked at it.

    Kelli 23:15

    So that was a very strange feeling. So it took about the first 24 hours or so before I started to be able to wait a little bit. And the muscle strength has come back very, very slowly over time, although I am happy to say now I have pretty good strength. bilaterally on both sides, I do still notice a difference from my left side to my right notably my left side gets tired faster. So it fatigues faster when I’m out hiking or going for a walk my left hip and my left leg get tired much faster than my right do anything in like weight bearing on my hands, I can just tell like my shoulder on my left just get tired faster.

    Kelli 24:19

    But that strength and endurance are improving. One thing that has not improved, but it did improve a little bit from the beginning, but then it kind of stalled out was the sensation. So I still have a sensory deficit, basically from my left ear down to my toes. It feels like pins and needles all the time. Feels like your arm has fallen asleep and woke up.

    Kelli 24:54

    When I have treated patients in the past who have had neuropathy, you know as a therapist and never quite understood like, how are you okay with that? Like how do you deal with the fact that you can’t feel your leg? And now I’m like, Well, now I know you just get used to it after a while.

    Bill 25:14

    Yeah, and it’s strange. I have the same thing. And I would say that my numbness pins and needles, all that stuff it happens literally from the middle of my base across. And one of the strange things that happened to me and my mom caught me the other day and my ever-suffering wife caught me as well, a little a few days earlier. Is if I have a runny nose, I can’t feel it on that side.

    Bill 25:47

    And if it’s happening on that side, but not on this side, the little bit of snot could sit there for a little while and I don’t know when the beards are not there, it kind of does the trip a little bit further along, you know, but when the beard is there, it stops there and Christine will look at me and go, can you go wipe your nose, please?

    Bill 26:16

    So I just have to say, Well, yeah, okay, thanks for letting me know. Sorry, I can’t feel it. I appreciate you telling me not to worry about it it’s all good, but we’ve kind of got to that point where she rolls her eyes. She tells me about it. She knows exactly why it’s happening. But I think the thought of it, the thought of what’s happening is just what’s putting her off a little bit. So that’s interesting. And now that you have this experience, and of course, I would rather you didn’t know what it was like, but now that you have this experience you know, what it feels like? How has that made you a better therapist?

    Kelli 27:00

    Yeah, so it changes your perspective on things quite a bit. And, you know, from the very beginning, I had, you know, doctors and friends and everybody telling me, you know, just think of what a better therapist you’re going to be now you can empathize with people in such a different way. And so, that has kind of been my mindset from the beginning as you know, just being able to personally relate to, obviously, a whole different group of people that I couldn’t relate to in that same empathetic way before.

    Kelli 27:41

    I’m not to the point yet where I’ve been able to return to work so, you know, still and, yeah, just one day at a time with that, but, I definitely can see things in such a different way now, but at the same time it has given me a different perspective on some of the other conditions that I treated as well. Whereas you know, I would often get you to have a lot of people who come in with the general pain like a general knee pain or a general shoulder pain, and in a way, I don’t want to say it makes me less sympathetic to that but it just kind of give you a little bit more of that hard exterior when you’re talking to somebody like I know my, husband jokes around because you know, my husband has me as his like in house physical therapist and so he’ll ask me all the time about like aches and pains and he jokes around that my bedside manner has gotten worse because now I’m much blunter. And I’m like, look suck it up.

    Bill 29:12

    I know what you mean. I think what’s interesting about that is people who I’ve come across who will have a session of whinging or moaning or groaning, you know, a pity party, let’s call it, you know, people like that. It’s okay to remind them every once in a while, hey, and you don’t have to make it about you. You don’t have to say, you know, I had a stroke and you know, you’re not having a stroke. So you’ll be alright.

    Bill 29:42

    You don’t have to say that. But you can say in the scheme of things, the challenge that you’re experiencing with you know, the toe that you stubbed isn’t gonna be that bad. You know, everyone else has probably stubbed their toe in their lifetime and I’ve got over it. So you could comment on that.

    Bill 30:05

    But I have done it when it’s necessary. And in probably the last eight years, it’s only been necessary a few times, I have done the whole thing of you know what, what you’re talking about is just a load of bullshit. Like, it’s not important. You don’t need to continue down this path of whinging and moaning about that particular issue.

    Bill 30:28

    It’s minor in the scheme of things. Other people are going through far greater challenges than you. And you just need to be grateful for what is happening. You know, that is not terrible in your life right now. And if I have the right relationship with the right person, I can do that. And it’s about having almost permission to put someone in their place nicely or abruptly or whatever, where they will take it on. board as information to adjust their mindset at the time, whatever it is that’s bothering them. So I know what you’re saying. And at the same time, that issue could be the biggest problem for that person at that time.

    Kelli 31:21

    Yep. Exactly. And I agree with that. 100%. And that’s where, you know, I think that it’s almost a little bit harder now to figure out an appropriate way to communicate with people because I never want to minimize what anybody else is feeling at all because I don’t want to be minimized in you know, in any of my experiences, but I also never want to compare what I have gone through with what somebody else has gone through because it’s all a matter of perspective, you know.

    Kelli 32:00

    Like you said that knee pain for somebody who’s been completely healthy and you know, able to run marathons and you know, do all kinds of stuff without pain. If you now have pain, like that is the biggest thing in your life. And so I never want to minimize that by telling somebody else. Well, you know what I went through, but at the same time, yeah, it’s just I think it’s figuring out a different just a different way to communicate.

    Negative mindset

    Bill 32:32

    Yeah, my dad’s in his late 70s and a year ago he had knee surgery to replace his knee, and up until that time, you could count on one hand the amount of times he had been to hospital for something serious. And that is a great run. He went through 75-odd years of really being unscathed, and he’s blessed for that.

    Bill 33:03

    So this knee surgery was more about getting him healthier and better and more physical and more able to get around. And of course, he needed some time on his back because he couldn’t be on his knee immediately because of surgery. He went into almost a deep depression within two or three weeks, that time when he was in rehabilitation and they were strengthening his leg for him and teaching him how to use his new knee and all that type of thing was such a difficult time for him and then the rest of the family because we had never seen him like that before. And instead of thinking about the future possibilities, all he did was think about what he was not able to do.

    Intro 33:51

    If you’ve had a stroke during recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, because 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 miss 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. 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 34:51

    And that put him into a spiral of, of a terrible in a terrible situation so and even to sit there and try and have a conversation with him to say, hey, soon it’ll heal and you’ll be able to get back to your regular tasks and everything’s gonna be fine. Even that was near impossible he was focusing on the right now the right here, and you could see it just getting worse and worse, every single day terrible and he got the first time we saw a glimpse of hope that he was going to get better was when he was able to get into the car for the first time with my mum driving, and that fact that he was in a car and he was able to do things made him emotional and he got really sort of teared up.

    Bill 35:55

    And that was the first glimpse of hope that he was going to get better. So talk about making this knee surgery, the biggest problem in your life ever. He did it, he just went through the roof and you couldn’t intervene. And I’m sure his therapists who have seen him many, many times in their attempt to rehabilitate his leg would have said to him, you know, we’re going to see you get better, you are going to get better, you are going to get on your feet.

    Bill 36:26

    But he gave himself a timeline. That was not the right time. So he thought, I’m going to have surgery, I’m going to be on my feet in a week. And because that didn’t happen, that threw him out. It’s a great example for stroke survivors to go to this point to understand that the timeline, that if you set yourself a timeline and you don’t achieve it, that is the time to get more motivated to do more work to get on your feet. It’s not the time to get depressed and worry about the fact that you didn’t make the timeline Time is something that you’re going to have plenty of. And things change after a stroke, and you have to do things a little bit differently. Did you notice that type of experience?

    Kelli 37:12

    100%. And it’s, it’s been very interesting too, to kind of watch that over time. And because I know when I was still in the hospital after I had had the stroke, and you know, I know that things did not look good on the scan. I know my brain didn’t look good on the scan. I know that my (inaudible) wasn’t looking good.

    Kelli 37:43

    But all of the doctors who came into my room were very positive. They were very encouraging. And they were saying, look, you’re so young, you’re so healthy, like, you’re going to bounce back, you’re going to be fine. Like you’re going to go back to work and they were just very, very sure of it. And I think, because they were so sure of it, that gave me the belief that I needed like, okay, this, this is not good right now, but I can work for it like I have things to work for.

    Kelli 38:19

    And so, and because of that I, you know, very much set a timeline in my head that in six months, I was going to be back to 100%. And I was going to be back to work and it all just has to be, you know, just behind me. As time went on and I do I think that in the beginning, having that much encouragement from the medical professionals, my family, my husband, my friends, and everybody being so positive and encouraging gave me It did give me more strength to push at first and they gave me that you know that drive to think like okay, I can do this.

    Kelli 39:11

    But then once that six months happened I did go through that period of like well this is not where I thought I was going to be in 6 months like I thought this was going to be behind me and then when the one-year mark hit like I had like a lot of anxiety a lot of like build up to that one year mark thinking like okay, this is an anniversary like this is a big deal and I had really built it up in my head and I was thinking again the same thing like I’m not where I thought I was going to be in a year like this is not the way that I thought it would go like I still have pretty significant deficit and like, like my biggest deficits now are more surrounding balance and coordination because my cerebellum was pretty badly damaged.

    Kelli 40:09

    And so the balance and the coordination are things that, affect us so much more than you really and truly realize until it has happened. And, so realizing at a year when I wasn’t again where I thought I was going to be. It’s very interesting because after that year passed, I felt a sense of relief. And I felt this sense of relief, because I was like, oh, like I built this up and built this up and built this up. And a year passed and I’m still okay, I’m still working and still like working on these things.

    Kelli 40:56

    Things are still getting better. And it’s so funny because my OT that I was working with at the time, she was like, What? What do you think is gonna happen on day number 366? Like, do you think that your body is just gonna stop making progress and that you know, wherever you are, you’re just gonna freeze in time? And I was like, well when you put it like that, I guess that does sound a little ridiculous. But you know, at the moment, like, I guess yeah, that’s what I thought. And so it’s funny because I saw her the week after that one-year mark, and she was like, so did anything happen on day 366? Like, no, I’m I’m still progressing.

    Stroke recovery timeline and expectations


    Bill 41:42
    Yeah, calendars almost need to be removed when it comes to stroke recovery if you can. And everyone does that anniversary thing and I celebrate my anniversaries. But I remember people saying to me, how are you going and I would say, I’m 95% done, that 95% done. I used to say that at the very, very beginning, and then I said that at two years down the track and three years down the track and it’s 95% I was noticing improvements and it was accurate, I would have said that I feel 95% but I realized that that last 5% is made up of so, so much work and effort, it is the require the most time, effort and focus than any of the other recoveries up until that point and like you, I decided that I was going to get as healthy as possible.

    Bill 42:45

    Work out how to learn how to decrease the inflammation in my brain. I learned how to support myself to reduce the fatigue you know, learn how to support the brain to Increase memory so that memory loss wasn’t happening so much. and decrease the amount of headaches that were happening, and everything that I did went into achieving those outcomes.

    Bill 43:13

    I had more good days than I had bad days and they started the good days started to accumulate, which meant I started to get momentum, which meant my 95% even though it was still 95%, two years down the track, was a different version of 95%. I had grown and learned and overcome so much, I’d lost a lot of weight. And I had lost a lot of weight without exercising.

    Bill 43:38

    And that was a bizarre thing for me because up until my 37th birthday, everything that you had to do was to lose weight was run, join the gym, do weights, go to aerobics four times a week, you know, all that stuff. And I did none of that because I couldn’t. It was the time when I learned the most about myself about recovery and what you have to do to your mindset to enable you to continue moving forward and moving forward.

    Bill 44:08

    And that is why the podcast exists so that we can have conversations like you and I are having. And we can tell people that what you’re expecting is all good. And when you hit that bump, and you don’t exactly know how to get beyond it, well, this is how we did it, or this is how another person did it. Or this might help you or here’s a bit of information that you didn’t know you needed to know.

    Bill 44:33

    And that’s what motivated me. And then the work continued and more and for me, to continue the stroke recovery journey, I needed to be accountable. And I needed you guys to keep me accountable for that. What I’m saying is that the community that we belong to on Instagram, and then and then doing this podcast and getting in touch with you and all the other 97 people before you that came on the podcast makes me accountable.

    Bill 45:08

    Because I’m not going to come on here and tell Kelli that, you know, I’ve had a relapse, and I’m eating again and I started smoking and drinking and partying all night. There’s no way I’m going to come on and tell you that. Because that is not what I’m about now, what I’m about now is this recovery journey and like you, I’m proud of my recovery journey.

    Bill 45:32

    And I’m proud of my experience with stroke. And, and that’s what it was that motivated me to contact you because that’s what you said. But also, you’ve gone on this journey to be responsible for your health and well-being in your recovery and I love that. And the before and afters are amazing. So tell me about how you got to that point to take responsibility for your recovery.

    Kelli 46:00

    Yeah, it happened in baby steps. So I think that if I had put a lot of pressure on myself to change a whole bunch of things all at one time, I think that I would likely have failed or not, you know, I would have gotten frustrated. But I recognize that, that there were things that I could do in terms of improving every day so when I got home from rehab, you know, it was my husband and myself and the dog and my husband was, you know, home for a little while and then he went back to work and it was just understood like, your job now is your rehab.

    Kelli 46:58

    When I came home from rehab, I was still walking with a cane, I was not able to drive. And I had to use a chair in the shower, I was not able to stand up long enough to prepare a meal for myself in the kitchen. Like you know, I felt pretty helpless and so, but at the same time, like, okay, that’s a lot of things that you have to work on.

    Kelli 47:01

    That’s a lot of goals where like, if you can just start to stand up for a little bit longer if you can just start to you know, improve your balance a little bit that you can get around and like key, it’s going to open up this door and this door and this door and so when I viewed it as your job is to rehab like, it’s not your job now to be at home and to sit on the couch and watch TV all day like yes, I guess I did that and I gave myself grace and you know, I I had to take a lot of naps in the beginning.

    Kelli 48:02

    And at the same time, I knew that I needed some sort of structure, you know, working as a therapist for so long like I always worked I’d always had something to do and I needed some sort of structure. And so for me, that came in, in the form of starting with an online fitness program, like I couldn’t go to the gym because I couldn’t drive that and so I couldn’t go to the gym.

    Kelli 48:29

    I was also at a point where I was way too embarrassed to go to a gym, I was embarrassed that I was 32 years old. I’m walking with a cane and I didn’t want for somebody at the gym to see me stumble and you know, do that thing where like you feel bad for somebody because you see somebody else struggling and I didn’t want anybody to feel bad for me like I wanted I felt like I was okay and like it became a joke very quickly when I was in rehab.

    Kelli 49:09

    And like my balance was not good but my balance reactions are really good like I don’t fall I might look like I’m going to fall out but I’m not gonna fall and so you know, I didn’t want somebody else looking at me like oh my gosh is she gonna fall and I’m like no. So for me, it was starting a fitness program at home where I had some kind of structure and some sort of like video that I was following and, no, I could not keep up with the trainer on the video, I had to modify every single move of every single workout for the first three or four months.

    Kelli 49:52

    Luckily, you know, being a therapist I’ve been very familiar with making modifications and knowing you know, knowing a lot about biomechanics and how to move my body and whatnot. But, for me, it was just starting with that little bit of movement. And you know, I couldn’t control at that point, I didn’t have much control over what I was eating because I couldn’t yet be in the kitchen to make meals, I had some great friends and co-workers who were bringing us meals a few times a week and dropping off food, which was just incredible.

    Kelli 50:32

    And, you know, so I couldn’t control that yet. But I could control my level of activity. And so that is where I started. And then once my activity started improving, and my strength and endurance started improving, well, then I found like, okay, I can, I can make some simple stuff in the kitchen as I can, I can help here and I can do this and so It was kind of like, as soon as I was able to do something physically like, I wanted to take it over like I wanted to do it, I knew what it felt like to not be able to do it for a while. And so, you know, now that I can make myself a piece of toast, I’m going to make this toast.

    Bill 51:21

    I love that I did that with walking on stairs. It’s not the most fun thing, but the fact that I can walk on stairs means every time I come across stairs, I’m walking on those damn stairs and it’s the same reason why I do it now before I’m rude and ask you how heavy you were. Okay, before I do that. Tell me a little bit about that thing that you said regarding you were embarrassed about walking with a cane.

    Bill 51:54

    So I just want to understand what’s behind that. What happens? to people, when they think like that when they become somebody who has a cane and they’re embarrassed about it, or do you have an insight into what made you possibly think that I think now on reflection, you’re you wouldn’t be embarrassed about doing something like that. So tell me what was going on right then?

    Kelli 52:26

    I think, I think there was a part of me that, felt like I wasn’t ready to be vulnerable in that way. I felt like it was me admitting that I couldn’t do something. And at that point, it was, you know, I had been walking and running and jumping independently for 30 years, and then now all of a sudden, you can’t do it and I still to be honest, I, I still had a lot of internal struggle at that point with why the stroke had happened, and whether I had done something to cause it, which is something that I had to work through over some time.

    Trouble navigating anxiety and acceptance

    Kelli 53:22

    And so I think that there was a lot of psychological stuff going on in terms of like, okay, like, thinking like, maybe I had done something to cause it and then now, you can’t even walk by yourself anymore. And it was a lot to be able to handle mentally and psychologically, as, you know, a 32-year-old, perfectly independent person.

    Kelli 53:54

    I think that I Honestly, struggled in the beginning a lot with the fact that it was an ischemic stroke and that it was not explained by anything aside from there being a blood clot, and I think that we hear so many, like, there’s so many negative connotations around developing a blood clot and as a therapist, you know, I admit that I probably had my negative connotations about it. And preconceived notions and I think that it was, hard to think about how other people would think of me.

    Bill 54:41

    Yeah, it’s interesting. I interviewed on the episode before this one, Joe Borges, in which he was a guy who experienced a stroke. His issue as well he mentioned result was the cane. The cane was an issue for him and as a man to another man, I said to him, you should have pimped it up and turned it into one of those funky canes, you know, so that it becomes an accessory, not a walking aid. I don’t know if pimping up a cane would have been for you but.

    Kelli 55:13

    I think for me, I think I was just so motivated to get rid of it. That pimping it up would have been, like accepting that it’s gonna hang around for longer than I want it to be.

    Bill 55:24

    Wow, there you go.

    Kelli 55:26

    And in reality, I did not use the cane for very long I mean, I want to say within a month of being home, I didn’t use it at all and, even that after the first week or so I didn’t use it in the house. I only used it when I was going for a walk outside. Yeah, so it wasn’t for very long. Yeah.

    Bill 55:54

    That was interesting to hear you say that. It’s just that these challenges that we create for ourselves in our head about what it means to be in a wheelchair or cane is so not necessary. I remember though, perhaps I was lucky in that my stroke, my three bleeds happened over three years. And then by the time I had surgery, almost three years had passed.

    Bill 56:19

    So I had a long time dealing with people who are recovering from stroke and meeting stroke survivors and learning from them. And being involved in groups with stroke survivors, I saw a lot of wheelchairs, a lot of canes, and all that type of thing. So that when I had surgery and woke up and had my left side proprioception issues and all the numbness and all that stuff and couldn’t walk, and I was in a wheelchair to me, it was like, it meant nothing other than this wheelchair is going to help me get around.

    Bill 56:48

    And I thought that was awesome. You know, I could have this thing and I could sit on it and I could still get around and people could push me from place to place if I needed to. And I didn’t know how long I was going to be in I didn’t know how long it was going to take for me to walk again. But it just never occurred to me that it was a negative thing.

    Bill 57:08

    And I’m not saying that it should have occurred to you, I’m just saying it never occurred to me. And that’s why I was really curious about what you and Joe said, about the cane, you guys had that different approach. And both of you got the stroke more abruptly than I did kind of got to not being able to walk more abruptly than I did. I got there a little bit longer.

    Bill 57:31

    And I don’t know, maybe I expected that I might not be able to walk. And again, that took a little bit of the edge off. I thought, well, from this surgery, shit can go wrong. And if it does, right, I might not be able to walk and if I can’t walk well, I’ll just take responsibility like I had the previous three years to be the best version of myself.

    Bill 57:53

    So that when it’s time to, you know, hit the ground running, so to speak with the recovery then I can focus on that and I had done a lot of work to be in a really good place so that I didn’t have such a lot of work to do after surgery. I had done a lot of the preparation for three years and done a lot of the things that you did. And at my heaviest on medication, I probably got to 92 kilograms. And I’m gonna see how many pounds that is I’m going to go to kilograms in pounds, which is 202 pounds, and I’m about 100 and I’m not six foot tall, so I’m shorter than six foot tall.

    Bill 58:45

    At my lightest after taking responsibility for my health and well-being and what I put in my mouth, I got down to 78 kilograms which is 171 pounds. So I lost 30 pounds by just focusing on what I put in my mouth and I didn’t feel like I was missing out on food or anything amazing. I was eating heaps of food. It’s just that I didn’t put certain other things in my mouth. So now comes the time when I have to ask you how much you weigh.

    Kelli 59:24

    Yeah, so I will say that I have. I have lost a total of 95 pounds. Yeah. And so I’ve lost 95 and the heaviest I mean I wasn’t at. I was not as a point you before I went to the hospital. I was not in the habit of weighing myself because I had no idea how much I weighed but at the doctor’s office, the heaviest that was reported after I got home from the stroke was 231 and now I’m down to 136.

    Bill 1:00:08

    104 kilos and how tall are you?

    Kelli 1:00:11

    5ft 9″.

    Bill 1:00:12

    So that is about my height roughly. And that is I’ve never been that heavy and I felt uncomfortable at 200 pounds. So at 231 pounds did you feel uncomfortable? Reflecting now? Did you kind of feel uncomfortable in your body?

    Kelli 1:00:31

    For sure, for sure. I did. And I had been. And even before having this stroke, I had gone through multiple, multiple times where I said, okay, I’m going to start working out now like I’m gonna I’m going to lose some way like I’m gonna, alright, this is gone on for long enough and mostly because I mean, like we live in tropical warm locations for the past seven years now.

    Kelli 1:01:00

    You know, on the beach quite often all year round, I was like, Yeah, I’d like to feel a little bit better going to the beach and, you know, whatnot. But to be honest, like, it always came back to I didn’t have I didn’t have a strong enough reason why I wanted to do that more than I wanted to drink the wine and eat the bread and you know, do all of those social things. And I wasn’t I wasn’t that unhappy to where I had a strong enough reason to make a change.

    The stroke recovery diet


    Kelli 1:01:41
    And so after I had the stroke and it’s interesting because I got home from the stroke or the hospital and I never reached a point where I was like, okay, Now I’m going to try to lose weight. I reached a point where I was like, now I’m going to learn how to be healthy. Because if there’s anything that I can do to prevent that from happening again, that’s what I’m going to do.

    Kelli 1:02:14

    And so I started, you know, learning how to make some healthier choices. I started learning a lot about inflammation, particularly in the brain, and like really, really wanted to decrease that inflammation in the brain as much as I could, which naturally led to a healthier diet. And it led to me cutting some things out of my diet that I don’t eat anymore, but once I stopped consuming those things, I actually felt better and so I was like, Well, I don’t know if it’s, I don’t know if it’s helping my inflammation or not, but like my stance feels better when I don’t eat it. So I’m not gonna eat it. I’m with it.

    Kelli 1:03:03

    And so, like I was never, during this whole time, I was never, like, actively trying to lose weight. I was just trying to be healthy. And so it’s funny because even my mom, I’d say about like, I don’t know, like six months ago or so I was talking to her on the phone and my mom was like, well, what’s your goal weight? How much do you want to lose?

    Kelli 1:03:28

    And I was like, I don’t know. Like, I don’t have I don’t have a goal weight. I don’t know where my body is going to feel good. I don’t know where my body is going to feel the best. Like, I’m not trying to lose weight. And so if it continues to happen, well, I know eventually it will stop like, eventually I’ll kind of even out somewhere and you know my body will be happy with it. Where it is, but my goal has always been I want to get stronger.

    Kelli 1:04:00

    I want to feel better physically. And, you know, I, I’ve had a lot of ongoing brain fog and a lot of ongoing dizziness, and just, you know, physical stuff that, that I’ve done a lot of trial and error and I was like, I want to figure out if there’s anything you know, in my diet or in my daily activity that helps those things. And so, and it never was about, about losing weight.

    Kelli 1:04:30

    But when it happened, I was like, well, dang, I feel so much better. Like I can just bounce up the stairs now. Like I can chase the dog around the yard, I can, you know, I have so much more energy and so much endurance that I know. I didn’t have it even before this stroke. And so it’s interesting to be able to reflect and to be able to see there’s so many ways where I think I’m stronger now physically stronger than I was before I had the stroke. But then there’s a certain deficit, like the balance and like the coordination that still prevents me from fully being back to where I was before. So it’s, it’s an interesting battle.

    Bill 1:05:24

    I love the approach that you took. And that’s exactly what I did. I had inflammation in the brain. I was on a medication that said it was going to reduce inflammation and the side effects of that were hallucinations, feeling like bugs were crawling up and down my skin, not sleeping over eating low blood pressure, and high blood sugar, like so many complications, but at the same time, it was supporting the inflammation in the brain.

    Bill 1:05:51

    And I got curious and I thought, well, how do I decrease the inflammation in the brain, when I learned about the foods I shouldn’t consume that is when inflammation started to decrease. And that’s what I did. I didn’t start a diet, I just stopped eating certain foods, caffeine, alcohol, sugar, gluten, and dairy. And when I did that, and when I did that, things started to get better.

    Bill 1:06:16

    And that’s, I talk about that a lot. And that’s what I coach people with now and the people who are learning about how to stop supporting their health and their well-being, it’s not about being on a diet, it’s about making the change from the inside out, not from the outside in and what I mean is, you know, I haven’t created a model around that, and I’ll put a link to a video that I’ve done about this model about how people can influence change and it’s I have a proper way like a real reason why.

    Bill 1:06:49

    How about that for stroke survivors the why becomes just enormous overnight. And then stop by and when you have the reason why is yours flitting from the inside as to what’s important to you, rather than what other people at the gymnasium who are selling your membership are telling you is important, what the latest what the guy that’s selling the latest thing craze or fad diet is telling you is the most important thing.

    Bill 1:07:19

    And then when you go down that path as you said, I found myself three years later being the lightest, and people are going to me What are you doing? What are you on? And what are you taking and all that kind of stuff? And I was like, I’m not doing anything. I’m not taking anything. I’m just not consuming gluten, sugar, alcohol, caffeine, and dairy. And I thought, well, that’s a bit extreme. How could you be missing out on all that stuff?

    Bill 1:07:45

    And it was like, Well, I’m not I don’t feel like I’m missing out. I feel like I am more energized, the better. I don’t need caffeine to wake up in the morning. I don’t need to have a cake at my birthday party. Because I never really liked it anyway and I only ate it because other people Cut it out for me and blew it out and all that kind of stuff. So I’m like, this is a completely different version of myself.

    Bill 1:08:07

    And before the age of 37, I never would have had that insight. before the show, I never would have had that insight as to how to influence myself and my well-being in a way, which was, which was one of the greatest gifts I got from a stroke. And it’s one of the most amazing things and that’s why I talk about it regularly.

    Bill 1:08:27

    And I started saying a lot of my episodes now he’s like stroke is one of the best things that ever happened to me in the context of growth, actual health, and well-being, because even though I have these deficits, I’m healthier than I’ve ever been. And I’ve decreased my risk of cancer, heart attack, another stroke, all that kind of stuff has all dropped and fallen.

    Bill 1:08:48

    And now without that, you know, maybe I would have been happier or would have been healthier, unhappy and angry. Risk of, you know, doing something silly because I was doing all the wrong things. And I made excuses as to why I’m not doing a lot of the wrong things all the time or, or that’s a good excuse to have a cigarette or that’s a good excuse to get drunk where I can’t stand up.

    Bill 1:09:19

    All that stuff was just me just giving myself a cheap reason to not take responsibility for how I was impacting my health and well-being and in my 40s I’ve lost so many friends in my 40s people that I grew up with that are not around anymore because they had suffered major heart attacks, passed from cancer, all sorts of things.

    Bill 1:09:46

    And they were living the same kind of lifestyle I was and I was I’m just happy to have got away with it. And I’m sad that they’re not around, and that they didn’t get to learn from the challenge that they experienced health-wise, they just didn’t get it. But the second chance and here we are, you and I, we both have that second chance. So it’s cool to listen to how you got there. What are the plans for you? Now? Like what is your short-term vision for stroke recovery? What’s the goal?

    What’s in store for Kelli Geuting

    Kelli 1:10:24

    Yeah, so um, so coming up next, we will go as a family, we have a move coming, and so I’m going to be leaving Hawaii, and in about six, months or so give or take. And so that kind of, I know that I have six months left here to continue doing the best that I can for myself, where I’m just focusing you know, completely on myself.

    Kelli 1:11:00

    And then I’m going to be moving back to Delaware with my dog and staying with my family. And my husband is going to be deploying to Bahrain, which is in the Middle East for a year, so he’s gonna leave in December. And he’ll be gone for a year or so I’ll be spending a year with family and, you know, it’s going to be an interesting time to be able to continue working on myself, but I’m also at the point now where, you know, I feel so well with, my recovery, and I feel really good about things that I’ve done so far.

    Kelli 1:11:42

    And, I think that it’s, at least from other people that I’ve talked to, I think that it’s a natural feeling that once you’ve found something that has worked well for you, and that you’re feeling good that you now want to share that with other people. And so I’m starting to come to that point where I’m like, Okay, I have a handle on what I’ve been doing.

    Kelli 1:12:06

    And, I think it works well for me. And so I, you know, I would like to pay that forward and to share that with other people. And so what that looks like for me right now is that I decided to partner up with a fitness company that I had been using their products for the past year to help me to get to this point where I am now, the fitness programs and nutritional supplements.

    Kelli 1:12:36

    And so I’ve partnered up with that program to be able to hopefully share that with other female stroke survivors who are looking for ways to learn more about their brain health and to optimize you know, their version of each person’s healthy lifestyle because I know that that looks different for everybody depending on you know where they’re at in life, but I want to be able to share with other people what I have done and you know, hopefully, make some sort of an impact on helping somebody else who, you know, maybe on a different plane or journey.

    Bill 1:13:20

    That’s beautiful I love that. That’s what is so amazing about this community stroke survivors seem to all want to help other stroke survivors get better, and recover quicker from a stroke. It’s such an amazing thing. And for me, it started selfishly, it was all about me, all the podcasts and all that stuff I was gonna learn from other people is about me, what I didn’t realize was that it was helping other people. But other people so many stroke survivors say the same thing. They want to help other stroke survivors. I mean, there’s no better person to help a stroke survivor than another stroke survivor. It’s such a great thing.

    Kelli 1:13:56

    And that’s what I think that I’m learning so much of like, we been through such a unique thing? It’s very interesting because no, two people’s strokes are the same. And so, you know, I talk to people all day long and I can talk to 10 different people and they’ve had 10 different experiences in terms of where their stroke was located and what deficits they have and what caused it and so it’s so interesting that all of our experiences and strokes are so different, but at the same time, you still instantly feel connected with somebody you still instantly feel like, okay, they get me like, I understand I feel like I can talk to them differently.

    Kelli 1:14:54

    And that’s just something that you know you rely on your friends and Your family and so much when you go through this experience, but there’s something different about talking to somebody else who has been through it. And so I think that I’ve found that along the way, you know, a community of people on Instagram that I did not know existed before, a year and a half ago. And now it’s like, well, this is cool. They’re like, get to talk to somebody back and forth who like, who gets it.

    Bill 1:15:30

    Yeah. It’s another one of those blessings. Tell me what advice would you give somebody that’s just fresh into their recovery and perhaps they’ve been out of the hospital for a few months. And they might be struggling of course, with whatever it is that they’ve experienced the changes the issue around mortality and all that type of thing, what would be some of the bits of advice you might give somebody who’s early on in their stroke recovery.

    Kelli 1:16:02

    Yeah, so I know a couple of things. One thing that helped me a lot was communicating with my husband and my loved ones about the type of support that I needed that I am extremely fortunate and that my husband was in the emergency room with his notepad taking notes on what the doctor was saying like to be able to communicate that with my family because I wasn’t, you know, going to be able to talk on the phone.

    Kelli 1:16:40

    And so for us communication from the very beginning was very important and it was something that you know, we didn’t have to establish that baseline too much of communication but, I know I can recognize how important It was for me and my recovery, you know, just being on the same page with you know, whoever is around you, whether it’s you know, a spouse or you know, another family, just letting them know, I know that I used to get frustrated talking to my mom on the phone sometimes because, you know, she would ask me the same questions like over and over and well, how’s your headache today? How’s your headache today?

    Kelli 1:17:30

    Because I had a headache for three months. It didn’t go away. And so I just got tired of people asking me about my headache. I was like, it’s still there. Like it’s not going anywhere. And then eventually it just disappeared and never came back. But I think like, once, I figured out my voice and you know, in talking about, you know my frustrations and talking about letting somebody know, like, I want to talk about this, like, I don’t want to talk about this.

    Kelli 1:18:06

    I think just having that communication was really helpful. And I think that the other thing that is extremely helpful when you’re just starting is that concept of don’t feel like you have to change everything all at once. I think just taking, taking small steps and changing what you can control, like the small things that you can control, but recognize that like, if there’s a lot of things that a lot of areas where you want to make change, just do one at a time, because otherwise, you’re going to get so overwhelmed.

    Kelli 1:18:50

    And so I have a great routine now and I have a great like daily routine that’s working for me, but it has taken, you know, over a year to get to the point where I feel comfortable with my day-to-day routine and six months from now when we move the routine is going to change again. So you know, trying to be flexible with that.

    Bill 1:19:16

    Well, that’s an awesome way to end the podcast. Thank you so much for agreeing to be on the podcast, sharing your story, and inspiring people. And I wish you the best in your recovery and well done for doing what you’re doing. And I’m just really, I’m just really grateful that you get to be here and share your story with us.

    Kelli 1:19:38

    I am too, thank you for having me. I appreciate the opportunity. Just share my own experiences.

    Intro 1:19:45

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post Ischemic Stroke Recovery At 32 – Kelli Geuting appeared first on Recovery After Stroke.

    1 hr 20 min
  • High Blood Pressure Caused a Stroke – Joe Borges

    4 years ago, Joe Borges was living an unhealthy life, ignoring all the signs that led to him suffering a hemorrhagic stroke, caused by high blood pressure.

    www.instagram.com/joesorocks/

    www.youtube.com
    www.theneuronerds.com
    www.facebook.com/theneuronerds/
    link. ee/joesorocks

    Highlights

    03:13 Hemorrhagic Stroke caused by high blood pressure

    10:22 I am a walking miracle
    11:58 Left side neglect
    17:01 Refusing to use a walking aid
    26:28 Neuro fatigue and thyroid
    36:47 Stroke is the best thing that ever happened
    46:06 Appreciate the little things
    55:02 Familiar VS Genuine happiness
    01:04:36 The best kind of obsession

    Joe 0:00

    I was in the hospital and I did suffer left side neglect for I forget exactly how long, but I didn’t acknowledge that I had a left side, even when I would draw something, I would draw only the right side of the picture. So they told me to draw a clock and I would draw one side of a clock. And they would say, what about the other side, okay, what are you talking about? It wouldn’t connect like that’s the whole clock.

    Joe 0:19

    It was just one side, which is weird. The Walking the physical stuff came back a few months because I’m a very impatient person. Patience was never one of my virtues. And I wanted to when I was doing outpatient physical therapy, I didn’t just want to walk I wanted to run. I didn’t just want to run I wanted to sprint. So I was very impatient. My physical therapist gave me the best advice and it saved my recovery. He said, Look, you have to have patience, or you will forever be a patient.

    Intro 0:54

    This is recovery after stroke with Bill Gasiamis helping you go from where you are to where you’d rather be.

    Bill 1:01

    Bill for recoveryafterstroke.com. This is Episode 98 and my guest today is Joe Borges. Joe experienced a hemorrhagic stroke caused by undiagnosed high blood pressure. With Lauren Manzano, Joe is also the co-host of the Neuro Nerds podcast. This is a high-energy episode and I feel like I found my soul brother in Joe. We share a lot of the same ideas and passions and both of us are motivated by our desire to make a difference to you guys, the carers, and stroke survivors.

    Bill 1:32

    Now just before we got started some time ago, I launched the recovery after stroke coaching. It’s helpful for people who feel like they aren’t getting the support they need once they are sent home from the hospital, especially in this time of Coronavirus isolation. Getting support to stay on track with your recovery has never been more important.

    Bill 1:52

    So if you’re a stroke survivor who wants to know how to heal your brain, overcome fatigue, and reduce anxiety recovery after stroke coaching might be for you, if you have fallen in the cracks between hospital and home care, and desire to gain momentum in your recovery and did not know where to start, this is where I can help I will coach you and help you gain clarity on where you are currently in your recovery journey.

    Bill 2:16

    I’ll help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal. Right now for everyone interested in learning what recovery after stroke coaching is about, you’ll get a seven-day free trial to decide if it’s the right fit for you. So take advantage of the seven-day free trial now by clicking on the link below if you’re watching on Zoom, or by going to recoveryafterstroke.com/coaching if you are listening online, and now it’s on with the show.

    Bill 2:49

    Joe Borges welcome to the podcast.

    Joe 2:51

    Hey, thank you for having me. I appreciate it.

    Bill 2:54

    Yeah, thanks for being here. I have been following you on Instagram for a little bit and I’ve started to get a little more and more curious about you and the things that you do. So we’ll talk about that in a little bit. But right now, can you tell me a little bit about what happened to you first? Like the stroke.

    Hemorrhagic Stroke caused by high blood pressure


    Joe 3:13
    How did I have my stroke? Yeah. Okay, so on August 4, 2016, I suffered a major hemorrhagic stroke, high blood pressure induced, I had no idea that I had high blood pressure. I just thought that I had migraines. So migraines ran at my family, and I was just like oh, I guess it’s just my turn. Turns out it was just high unchecked high blood pressure. So I’m very thankful I made it because from what I understand, I probably shouldn’t have.

    Bill 3:44

    So did you have other than those headaches those regular headaches that you got that you described as migraines? Did you have any other signs leading up to the actual stroke?

    Joe 3:56

    Oh, yeah, for sure. All the stuff that the doctor says like, look out for I had, I grew up very poor. So we didn’t necessarily go to the doctors, we just dealt with it. Or it got bad enough went to the emergency room, there was no in-between. I didn’t even know what urgent care was until about two years ago.

    Joe 4:15

    So I had incredible neck pain. And from what I understand, you shouldn’t it shouldn’t be for more than a day or so if you slept wrong. I had this intense, incredible neck pain for at least two decades. And the same thing I had sore knees. So apparently that was a sign too like, yeah, you have like this pain in your knee.

    Joe 4:38

    I had an old basketball, college basketball injury. And I was just like, Oh, it’s just my knees. It’s just this is how it feels to walk. No, these were all telltale signs of my body saying, Look at me. something bad’s gonna happen if you don’t do anything different. Unfortunately, I didn’t do anything different and something bad happened.

    Bill 4:52

    But in your defense, you’re male as well. So like we have that thing that we do. Where nothing matters or is always important, or is relevant or is worth looking into.

    Joe 5:03

    Right? So yes, I’m a dude. Also, I was an athlete, so I rubbed some dirt on it and walked it off. It’s fine. You know, I had that mindset. And yeah, it caught up to me though. And then I realized, oh, wow, this is not how normal people are doing, quote, fingers this is that how normal people function day to day, you shouldn’t have 16-hour migraines two, three times a week. You shouldn’t be vomiting in the shower because another headache hit. And that went on for a solid I’d say three to four years that was happening every single week three, four times. I’m suffering from debilitating migraines. And it was my body giving me a warning and I completely ignored it.

    Bill 5:42

    Yeah. And that is so bizarre though because that was your normal and that’s the thing that I had normal my normal was overworking and overdoing all these things, not paying attention to any of the signs, and making up my narrative as to why all these things were happening to me. When the numbness because I had a hemorrhagic stroke, when the numbness went from my big left toe to the entire left side of my body, I argued with the person telling me to go to the hospital, because I was telling them, Man, I can’t go to the hospital because I’ve got to work tomorrow.

    Bill 6:17

    And if I go to the hospital, you know what’s gonna happen, they’re not gonna let me out. And I’ll be there the whole weekend, and I got work but it’s just numbness.

    Joe 6:28

    It’s funny how you justify these things, you know, especially at the time where like, everything you were doing at the time, that was the most important thing, nothing else mattered, but it’s funny how a stroke it’ll rectify that it’ll let you know what’s truly important. You know, I was when I I knew the second the vessel burst in my brain. I remember the actual split second because I had suffered migraines forever.

    Joe 6:52

    This was like the migraine of all this like the Michael Jordan of migraines. This was just like the peak. This was it and that was right up here. And I just had I couldn’t even focus. And my girlfriend, she’s a musician, and she had a show. And I was there. Her dad just so happened to be in town too. So we went to the show. And from the parking lot to the show, it bursts, I was having trouble walking, and I was having trouble focusing and I felt it.

    Joe 7:18

    And if you’ve ever been a dumb kid like me, and you put like a key in a socket, there’s like an electric current that goes through your finger up through your arm or your body. I felt that feeling in every fiber of my body, and everything. So what’s funny is for a split second, the migraine went away. I was like, oh, yeah, that felt good. And then a second later, I completely forgot how to walk.

    Joe 7:43

    My body felt like jelly. And I said something alarming to my girlfriend’s father, where I said, I feel like I’m learning how to walk again. Because I did I felt like a baby deer just learning how to walk. And this is so you said, you know me being a male. It gets so much worse. I looked horrible. So they’re like, well, maybe we should just go home. And I’m like, no, no, I want to see you perform like, let’s do this. I get there. The first thing I do is order a beer.

    Joe 8:09

    That’s a great idea. And then I was like, Man, this headache, it’s just not going away. So something that you probably just shouldn’t do period. Like, just taking aspirin is aspirin, and alcohol goes together. Great. So I haven’t had an aspirin. I had a beer too. And then I just dealt with it. And then after the show, we’re on our way home. And well, you know, how are you feeling? Should we go to the doctor? I’m like, No, No, I’m fine. I’m fine.

    Joe 8:34

    And I’m almost insulted that people are worrying about me, telling me that I should go to the doctor. I dealt with it. I was I ended up throwing up and it was I was throwing up basically, I was throwing up blood and I had a burger. So it was just no I’m throwing up the red meat. That’s that’s what it is. Again, I’m justifying what these things are happening.

    Joe 8:53

    And my girlfriend’s worried about me. Her dad’s worried about me and I’m starting to do weird things where she was teaching a vocal lesson the next morning because this went through the night. And I was just throwing up nonstop. And I was in the bedroom. She’s like, okay well go lay down in the living room I’ll do the vocal lesson, and hopefully you’ll feel better.

    Joe 9:10

    And she came out and I was standing in the kitchen. And she said I thought I told you to lay down a living room. And I said, apparently not in a very nice way. I am in the living room. So she was like, oh, something’s wrong. I was just standing in the kitchen like a lunatic. So her dad made a few calls and talked to her uncle who had like a brain thing.

    Joe 9:29

    And he’s like everything you’re describing. He called 911 immediately. And I resisted the entire time. I don’t remember any of this. For the moment I got home. I don’t remember much for the next two months. But apparently, I wasn’t very nice. So that sucks. I was pretty mean and I was very resistant to going to the hospital.

    Bill 9:47

    I think we need to come up with a new T-shirt. You know somebody that says I’m such a freakin idiot. I’m so stupid. That it’s a miracle that I’m here is that possible for us to create, collaborate, and create something I’m that stupid, but I made it something like it’s a miracle. I don’t know.

    Joe 10:05

    Do you know what might be the next neuro nerd t-shirt that seems like it has legs? I would wear that daily.

    I am a walking miracle after having a hemorrhagic stroke


    Bill 10:13
    Man, that’s hilarious. So what happened then like, learning how to walk again, what was all that stuff? In your future? What happened?

    Joe 10:23

    So here’s what’s crazy about my stroke. So you’re familiar with hemorrhagic strokes and the survival rate is low. We are some of the luckiest people in the world. And the people that make it survived, which is very few, their physical death and mental deficits are severe. I am a walking miracle as has been told to me by several doctors, and neurologists.

    Joe 10:51

    Recently wait let me say this right, because I always say it weirdly. My girlfriend didn’t marry her brother. She officiated her brother’s wedding. So at the wedding, two people worked in the neuro field. They knew all about me and I walked over to introduce myself and they were looking at me like I was an alien.

    Joe 11:10

    They were just really like focusing in and like, oh my gosh, and I was like, hey, is everything okay? And they’re like, but you’re walking and talking and you’re, you’re at full motion and you’re here and I’m like, yeah, and they’re like, yeah, that shouldn’t be. I was like, oh, okay, so it just hammers in how serious it was and how blessed I am to be here as functional as I am.

    Joe 11:31

    Physically. I didn’t have very many deficits. I suffer from tremors in my right hand. And so I was sloppy anyway, so it’s not a big deal. All of my stuff is cognitive. It’s a memory loss. I suffer from short-term memory loss, which is the worst. And yeah, but that’s about it. You know, I’m working on that every single day and my hand is getting better with occupational therapy for about two to three years.

    Left side neglect caused by stroke

    Joe 11:58

    I was in the hospital. I did suffer left side neglect for I forget exactly how long but I didn’t acknowledge that I had a left side, even when I would draw something, I would draw only the right side of the picture. So they told me to draw a clock and I would draw one side of a clock. And they would say, what about the other side? Okay, what are you talking about? It wouldn’t connect like that’s the whole clock. It was just one side, which is weird.

    Joe 12:20

    The walking and the physical stuff came back a few months ago because I’m a very impatient person. Patience was never one of my virtues. And I wanted to when I was doing outpatient physical therapy, I didn’t just want to walk I wanted to run. I didn’t just want to run I wanted to sprint. So I was very impatient. My physical therapist gave me the best advice and it saved my recovery.

    Joe 12:44

    He said, look, because I don’t like doctors. I don’t like the hospital. I just don’t, it’s not my thing. And he said, look, you have to have patience, or you will forever be a patient. I was like, oh, like that hit me that like stuck to my soul ever since then I have, you know, more patience than I’ve ever had in my life. And I think it’s helped me get to the point that I’m at right now.

    Joe 13:06

    You know, I did physical therapy for two years, and I did occupational therapy for about three and a half years. I just stopped that recently. And it was it’s, it’s weird, because, you know, it’s part of my rhythm. And I think you I would say, I don’t speak for you, but like, routine is kind of everything for a brain injury survivor. And once that routine was broken, I just went into panic mode. So I had to figure out like a whole new routine but you know, I’m working on it. I’m working on progress, just like the rest.

    Bill 13:34

    Yeah, that routine thing is interesting because I did enjoy the routine, but then it got too much. There were three visits a week to therapists, and then there were other appointments and I was like, freaking hell man. This is taking up so much of my time, like I want to do other stuff and I don’t want to do that anymore.

    Bill 13:53

    And I remember one of my last sessions at, like, outpatient occupational therapy. Like I said to the guys, like with all due respect, like you guys are sack, like, I’m not interested in coming here anymore, I’m taking responsibility for the rest of my recovery. It takes too long, it takes me an hour to get here. And then I’ve got to be here for an hour, and then I got to go out of our home for an hour.

    Bill 14:13

    My whole days wasted, you know, forget about it. And that was a turning point for me. And, I hadn’t completely fully recovered, but I achieved the last thing that I wanted to achieve, which was to feel comfortable about running, and not a marathon just across the road to get away from cars, you know, when I’m crossing the road and when I achieved that, I felt like, alright, now I feel safe to get back out and to be on my own, going for a walk or wherever.

    Bill 14:42

    So I sacked them, and they were very pleased. And I was excited because I had time to myself again, you know, and that’s what I did. I started to put more time into my projects and my passion. And this is kind of how the podcast emerged. And then I just found myself doing everything around my podcast and coaching people and doing all that kind of stuff. And there isn’t a routine around that. But there is more time for me and for the first time, I’ve been able to create time for me, you know, so that’s kind of how I do it.

    Joe 15:18

    That’s, absolutely amazing. You know, and I love how the impatience kicks in. This is taking too long like I won’t do it on my own. That’s amazing, though, that you actually took responsibility and you stepped up and did it. I just followed what was said because my significant other is my much better half. She was like, okay, so this is what you’re gonna do.

    Joe 15:36

    And I was like, okay, you know, I’m not even gonna argue. So I listened. I’m gonna be like the perfect husband. Yes, honey. Sure, whatever you say. It did help too. I don’t. I wasn’t very functional, getting out of the hospital. And again, patience was forced upon me so I had to use a cane when I got out of the hospital. Now That cane was the bane of my existence. I hated it I didn’t realize this until going to therapy, but like, I’m very vain.

    Joe 16:07

    I have a lot of vanities. And I didn’t want to you know, I was like, I played college basketball I’m not gonna get a cane this is ridiculous. So I would do a quote out forget my cane at home, and we’d be out and you know, she was like well where’s your cane? I was like, oh, damn I forgot it again. So I just never wanted to use it. And the one time because for the first few months, when I was at home, I had Joe sitters, I would never be left alone.

    Joe 16:34

    Lisa went, she would have a show. And I felt like a little kid. She’d be like, okay, so Melody’s gonna come over, okay. And she’s gonna and I’m like, okay, to be on the phone. I would always have to have someone because she was really afraid that something bad was gonna happen. She absolutely should have been because the one time the first time that she left me alone, I completely didn’t listen she was like, use your cane If you need to get something to drink you need to use the restroom, use your cane.

    Refusing to use a walking aid

    Joe 17:01

    I was like, okay, promise, I didn’t use it. As soon as she left threw the cane, I’m not going to use this thing. About 10 minutes later, I went to get something to drink out of the kitchen. And when I say I fell terribly, I fell so bad. I fell back. And I just remember being on the floor looking up at the ceiling thinking, how did I get to this point? Like, what happened?

    Joe 17:24

    But then I realized, wow, I do need this right now. It was one of those times where I realized hey, I have to accept that this is where I am right now. Or I’m just going to be stuck here forever. So I realized I need my cane right now. Now that I’ve accepted that what can I do to get rid of this damn cane because I hate it I started to recover a hell of a lot faster after that.

    Bill 17:46

    You should have got one of those pimped-up canes you know one of those that like some dude you know, dressed in a massive overcoat, you know that’s purple or something would wear you know.

    Joe 17:56

    I you know what, you know what I needed. I needed one of the pimp’s cane with a big hat with a feather sticking out of it. That would have been it you know, and maybe like platform shoes. That would have been the look.

    Bill 18:06

    Those guys just rock that cane you know you needed to get a different mindset about what your cane was doing. You should have had it as an accessory, not as a walking tool.

    Joe 18:17

    You know what that’s a great way to reframe. I’ve reframed so many things. Now, I wish I would have reframed it back then because I would have gotten oh, yeah, you know, I had a major hemorrhagic stroke and it turned me into a pimp, that would have been such a great thing to do.

    Bill 18:33

    I like the fact that you had to fall over and probably nearly smash your head open again, to realize that this is the time for me to just relax and just rethink things and do things differently. I had a fall as well at home. When I was left alone, the kids were at school, my wife went to work and I was sitting on the couch I got up and I got up on my left leg instead of my right leg.

    Bill 18:58

    I got up I was on my feet and then I was on the ground and then I smashed my ribs on the armchair on the arm of the couch on the way down, you know, and I was off for about three or four days. And I didn’t tell my wife because I probably would have gotten in trouble like you. And then and then that made me take a different approach and pay attention to my leg when it’s on the ground.

    Bill 19:23

    So, to this day, in the morning, it’s been now November 2014, was my surgery. So it’s been a fair amount of time we’re coming into six years. I look down, I make sure my foot is on the ground, especially before I get out of bed. I give it a couple of taps. And then once I know that it’s there, I get up and walk off. Yeah, it kind of wakes up it gets a you know, it gets kind of going and then and then it’s good to go for the majority of the day.

    Joe 19:54

    That’s amazing. You know, like I had to do different things. I don’t know if you had this when I got out of the hospital, I hit my head more than I hit my head in my life. Getting into cars I would slam my head. I wouldn’t I don’t know what happened. I just turned into like a bumbling fool. I never hit my head beforehand. But now that I have a head injury, a giant hole in my head, I’m hitting my head on everything. It was crazy.

    Bill 20:20

    Yeah, it’s some kind of a magnetism thing. So I would find that when I’d go to the shopping center or the shopping mall, I would get knocked into by more people than ever in my life. We’re talking about three weeks out of surgery, sorry, three months out of surgery, again, fresh scar, all that stuff. And then just people running into me all the time. And me trying to work out how I became magnetized to every single person who’s not paying attention to where they’re walking right now.

    Joe 20:50

    I’ll tell you why. And you know, forgive my language for a second people are dicks. People don’t pay attention to what’s going on in front of them. Unfortunately, they have blinders. On it’s all about, like what they’re doing getting from point A to point B, not realizing there are other people around.

    Bill 21:05

    Yeah, absolutely. Look, it’s been a really interesting experience that interact with other people in the way that we’re chatting about it is something that I haven’t contemplated much. And, yeah, it was really difficult to try to find myself in a place where I felt like I was safe and I kind of did the whole, you know, looking around the place, making sure that nobody was coming from out of nowhere to ball me over. Because I really can’t think about like my head getting hit. It just really makes me cringe like thinking about it even.

    Joe 21:42

    If I think back about it, I probably should have had a helmet on, you know, I probably should have just been the boy in a bubble just to make sure I had people away from me. It was it was intense. Also, there was an incident at the hospital when I was there, which resulted in a gnarly case of PTSD. So like noises and certain things would set it off, especially in public. Then I’ll have like these little freakouts which on top of everything else recovering from a brain injury with PTSD. Oh my gosh, recovery was a nightmare, you know, but you know, we were resilient. I honestly think that brain injury survivors are the most resilient people in the world.

    Bill 22:18

    Yeah. And you have to be because it’s an ongoing recovery. It’s not something that you do, and it’s just over. This is what surprised me more than anything. And I’ve said on a few episodes, you know, you see somebody in a wheelchair. And I used to think the only difference between me and that person is they’re not walking, man what a naive way to look at a person in a wheelchair. I mean, there’s so much going on underneath that I had an idea, too. They could be having, you know, spasticity, they could be in pain they could be, you know, there’s so many things and I just used to see him and go well, you know, the only thing they can’t do differently is walk.

    Joe 22:57

    It’s amazing what a brain injury and a stroke, how much perspective it gives you and how it changes you it changes you. You know what’s funny, I wouldn’t people ask me oh man, don’t you wish like things were normal? And I’m like, no, this helps. I would not change a thing. It’s helped me become the person that I think I always wanted to be. I’m like a better version of myself. I’m Joe 2.0.

    Intro 23:21

    If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time 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 recover? What things should I void in case I make matters worse, doctors will explain things, but, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 23:46

    If this is you, you may miss out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Joe 24:33

    The best version of myself that I’ve ever been. And I also think that we have a little bit of a cheat code because we know what it’s like to come this close to not being here. So when I see when I think about the things I stressed out about prior when I see people get stuck on these just ridiculous things. I’m like, wow, why are you focused on them like, oh, I used to be that, you know, I think we know that that’s we can save our mental bandwidth which isn’t a whole lot. Most of the time, for the truly important things.

    Bill 25:02

    That’s it. And from time to time, if you’re like me, Joe, you might go back to an old pattern or two.

    Joe 25:09

    Yeah. Oh, for sure. It’s it’s hard. It’s hard. So I’ve learned over so I’m going on four years in August will be four years for me. And I still talk about like, Oh, yeah, all that stuff. It’s over. I already did that. The neuro fatigue. I had no idea that that was going to be something I would be dealing with forever. I didn’t know because I didn’t have it for the first couple of months when I was home. Like it wasn’t that bad. I would read something. I’d have to take a nap because like it was just exhausting.

    Joe 25:40

    But I was like, as soon as that was over, I was like, Oh, yeah, that wasn’t too bad. But everybody warned me the neuro fatigue brain fog like that’s, it’s a thing. I was like, alright, cool. I didn’t have an episode for it was something like seven or eight months. And in my head. I’m like, no big deal. I went through it and then after seven, eight months oh my goodness, it came back with a vengeance.

    Joe 26:04

    And I was taken aback. I was not expecting it. And then the more and more people that I spoke to this one woman, she had her stroke I think was around 13 years ago and she said, I went six and a half years with no brain fog with no neuro fatigue then she said, After six and a half years, it came back non stop for about two months. And she’s like, it’s just a weird ebb and flow, the way our brains connect, you know.

    Neuro fatigue and thyroid


    Bill 26:28
    There are a lot of things going on with neuro fatigue. And what a lot of people don’t realize is a lot of it sometimes has to do with the thyroid gland, because I had a thyroid gland issue that the same time that I had the brain issue. So one of the situations I was trying to work out was whether the neuro fatigue was a result of my thyroid or was a result of the brain injury, and I was going through this process, right, and then eventually, after about two and a half years after my surgery, I had thyroid surgery, and then the neuro fatigue went through the roof and I realized that it was the thyroid that was making my neurological fatigue even worse.

    Bill 27:04

    So if you have a bad couple of months and your thyroid is under pressure or attack, it may not be the brain it may be another part of your body. And it’s a complicated thing because people just put it all in the same place. It’s neuro fatigue, I’ve had a stroke, they make the assumption. And the other thing that can cause neuro fatigue is adrenal gland issues. So some people might have overactive adrenal glands, then they crash and then the neuro fatigue kicks in.

    Bill 27:33

    And for some people, it’s even actually eating shit foods like gluten, dairy, alcohol, that kind of stuff, because that creates a slowdown in the metabolism, and therefore the brain can’t get the energy that it needs. And then it makes matters worse. So I’ve seen a lot of people who have improved their neuro fatigue and they’ve been able to become more able to do more as the day as the months progressed and the years progressed, and then they have their slumps.

    Bill 28:00

    And I’m a perfect example of that because I have some good days and good months, and then I have what I call now that amazing signal where my body says, dude, go and rest. Your brain is going to stop working in about three minutes and you’re going to be talking gobbledygook just go and do nothing. And now I go and that’s how I manage it. But my day, normally I start to Peter out if I’ve had a good night’s sleep, I start to Peter out at about seven, eight hours on the go.

    Joe 28:32

    Okay, I get yelled at constantly that I don’t sleep enough. And I know I’m going to say it and I’m going to get a look. I’ll comfortably get maybe about five, or six hours of sleep. And so my bedtime normally will be about 2, 3 in the morning. And then like I never wake up later than like nine to walk my dog. And I got yelled at for years by my occupational therapists I just, get yelled at by people around the world. Oh, Joe, what are you still doing up? I have this sickness now. I have this illness where I need to connect and help our community.

    Joe 29:14

    It’s something that I honestly feel that it’s one of the reasons that I made it back. I feel it’s my purpose. I feel like it’s my meaning. And there are people around the world. You know, and I’m talking to people in Macedonia, I’m talking to, you know, people in Singapore, I’m talking people in Australia, oh, I have a lot of people I speak to in Australia, two, three in the morning, like here, it’s late over there. It’s like bright early, you know, and it’s just something that I have in me that I need to do, because I know what it’s like to feel isolated and alone.

    Joe 29:42

    Even though I’ve had you know, my significant other who has been incredible through all this. I’ve had, you know, good friends, my family, and not really so much. But, you know, I’ve had people here every step of the way, but unless you’ve been through it, you don’t know what it’s like. It’s the loneliest, most isolating people. In the world, and I never want anybody to feel that way. So I want to make sure that I connect with as many people as possible to help them along the way.

    Bill 30:07

    That’s an awesome reason to exist. That’s exactly why I’m doing what I’m doing. Like that’s, I got motivated, being wheeled after surgery out of the hospital into rehabilitation, which I had to go, you know, through patient transport in an ambulance type thing. And that’s when I had the idea to start the podcast.

    Bill 30:29

    And I could, and I thought, I’ll tell people, how to get beyond all the shit that I’ve been through now that I’ve had this journey. That’ll help people, man, you know, we’ll be able to get people to move beyond where they are right now. I made a post about it just I spoke about one of my podcasts just a couple of episodes ago where I spoke about, how I never want anyone to experience what I experienced and to take as long to get to where I got to because they couldn’t find us or they didn’t know that there was a shorter path. Or something like that. So, like, I know what you mean. And I’m gonna reframe it for you if you’re not well enough to do that. If you’re not happy and well enough to do that, you’re not going to be able to do it with all of those people. So, you know, dial it down a little bit.

    Joe 31:20

    Yeah, yes, that’s the perfect way to reframe it. It is like I have to make sure I’m good. So I can help the masses that is and I you’re speaking my language, 100% I understand exactly what you’re saying. You You hit that point earlier than myself. I went through maybe my first year of recovery, lonely, sad, and isolated because I didn’t have anybody to talk to I didn’t know that this amazing, beautiful community was out there because nobody shared it with me.

    Joe 31:52

    I didn’t know what to do. The only other stroke survivor I met was a physical therapist and the person was comforting. Probably in their late 60s, which is, that’s cool, but like we can’t share a lot of experience life, like my current life experiences, you know, I suffered my stroke at 39. I’m 42 now, dudes clearly like, he’s lived his life and not to be mean. It makes more sense that he had his stroke at his age, you know, I needed to talk to somebody who understood what I was going through.

    Joe 32:26

    It was randomly at a party. I was there and I was talking, I was sharing my story with everybody. And there was this girl and she’s just staring at me intensely, like, almost uncomfortable eye contact, and I’m telling a story and I’m thinking in my head, I’m like, I’m here with my girlfriend. And afterward, she came up to me, she was like, I understand everything that you’re saying. She’s like, I suffered a major concussion. It was around the same time I did about maybe a few months before I did, and she’s like, nobody understands.

    Joe 32:56

    We went to get coffee once and we just talked, we explained what it’s like to live with this brain injury, what it’s like to function what our new normal is. It felt amazing so selfishly, I was like, you know what, we need to do this more often. I was like, we should like schedule, like a coffee date, like once a week. And we should do this, like, maybe we should record it, again, to selfish individuals, not for anybody else strictly for ourselves.

    Joe 33:23

    And then we decided to release it. And it’s like, yeah, like, let’s do this thing. And it just kind of grew from there. And just the fact that there are so many other people out there, like us, blows my mind. And exactly like you said, I don’t want them to wait and struggle. I want to help them get to where we are now. Faster. It shouldn’t be a year, it shouldn’t be two years, and it should be immediately you should get the help and understanding you need as soon as you have your stroke.

    Joe 33:49

    I’m like trying to figure out a way to contact these people as soon as it happens, you know, and, I think if we keep doing what we’re doing, we’re I always say this sounds super grandiose. Like we’re changing the world, you are. We’re just one survivor at a time. Because you’re, I say this a lot too individually, we can change lives, we can with the people that we connect with the people that we talked to, together as a group as a collective, we can change the world. And I truly believe that.

    Bill 34:17

    I agree. I got challenged by some people that I knew about, you know, what I’m doing and what I’m going to do. And while this happened to me, you know, and I got challenged in a way that was woo-woo kind of shit, you know, the universe and all that kind of stuff. And I’m like, how could this have possibly happened to me so that I could do what I’m doing now? Or What a load of crap like, no, this is random. It’s not why it happened to me.

    Bill 34:43

    And then, just before I had the stroke the first bleed, just before I got to that stage, I had started to get my business to the point where it was doing well. We had a property maintenance business, and I secured one of my biggest contracts. First time in my seven or eight years of getting this business up and running, and a week before everything was signed, and the paperwork was done, I had this bleed.

    Bill 35:11

    And my client says, dude, you know, where are you at? You know, can we get this work done? And I’m like, No, I’m in hospital, but I have a bleeding brain. Like, I don’t know what that means. I don’t know if I’m gonna be able to do anything. So they canceled my work, and they gave it to somebody else, right? And I was so pissed off about that.

    Bill 35:28

    I was like, I’ve worked for seven years to get to this point. Now I’m here and I can’t do it. Don’t tell me there’s a good underlying reason why that’s a load of crap. So anyway, I can easily be challenged by these amazing people around me. And then it’s eventually what kind of made me understand that you know, dudes, like the money and all that shit that you tried to do to get to that point, is what made you unwell and create the perfect storm to allow this bleed to happen to that point, right.

    Bill 35:59

    So that’s not where you want to be, don’t make it about the money, make it about something else. So then I started to reframe all of that and got to that point where I was able to see it as a blessing in disguise. And then one day, I got to the point where I looked back and I said, and I’ve pissed off a lot of people. By saying this, I said that stroke was the best thing that’s ever happened to me. And before anyone listens, loses their mind stops following me, and starts sending us hate mail. In the context of expanding my wisdom, it is one of the best things that’s ever happened to me and it might be for you if you allow enough time to pass.

    Stroke is the best thing that ever happened

    Joe 36:47

    Yes, I agree with you wholeheartedly and it reminds me I don’t have a lot of memories from the first couple of months after my stroke, but the one that I do vividly is my girlfriend bless her beautiful Incredible heart. Once I was a little bit I was awake and I was a little bit more cognizant of like where I was she said, she leaves in and she’s like, you know, the stroke is a blessing.

    Joe 37:11

    And without missing a beat, I looked at her and straightened her eyes. And I said I don’t think you know what the word means. Because I’m in bed. I can’t walk. I have a giant hole in my head. I don’t know what’s going on in my body. I have no I can’t I need help doing everything. This is not a blessing. It took me a little bit of time. But I realized she was right. And at this point, and at that, and maybe about it was about a year and a half, maybe two years later, I realized I was like you were 100% right.

    Joe 37:41

    This was a blessing. It was the best thing that ever happened to me. I wrote a blog. I think it was the first blog I ever wrote that was the stroke that saved my life. Because it did. It didn’t take anything from me. It gave me my life because it helped me realize I’ve been in survival mode since I was like seven years old. You don’t live when you’re in survival mode you survive. Now, I have lived more life in the past almost four years than I have in the 39 years prior.

    Joe 38:09

    And this honestly, is the best. It was an absolute blessing. It’s the best thing that ever happened to me and I would not change anything. Well, I might change a few things, but I wouldn’t change anything because it got me here. And I’m happier than I’ve ever been. I’m not just surviving. I’m on the verge of thriving, you know, like, I’m truly living life every single day. And I’m doing my best to help everybody else as many people as I can along my way, because I think that’s why we I honestly believe that’s why we made it. We made it not to complain, be bitter and angry and upset, and get in the same patterns that we got in I truly believe that we made it to live to truly live and help people along the way.

    Bill 38:50

    Yeah, I hear you, man. And I just got off a coaching call with one of the people that I’m helping through some of the stuff that they’re going through with their stroke recovery. She’s not in that space yet. She’s not able to say that yet. And it’s challenging her. And she wants to get to that stage. But one of the things that she said today was even though she has deficits, and she’s not as mobile as she would prefer to be she’s healthier than she’s ever been. She’s healthy. And that’s one of the weird things that people don’t realize is that sometimes, you know, not for me anyway, the stroke made me healthier than ever because I stopped drinking, I stopped smoking. I stopped doing all the stupid things that I was doing.

    Bill 39:33

    And as a result, my health has improved. Even though every single day I have numbness, I have balance issues. I you know, bump into things, I have fatigue, even though I have all of those issues, I’m healthier than I’ve ever been. So that’s a really good, underlying thing that I’ve been able to achieve as well. Because I never focused on my health before I thought I did but you know, the bullshit version of health. You know, the one way if you go to the gym and smoke, you’re still healthy.

    Joe 40:00

    Yeah, that’s, that’s amazing. I’m, really happy that you’ve done that, you know, it’s, I have fundamentally changed everything about my life, everything the way that I eat the way that I think the way that I function as a human being, I meditate every day where beforehand I didn’t I couldn’t do it. I honestly couldn’t do it. I’m a recovering Catholic. So when I get alone in my thoughts, I go dark quickly.

    Joe 40:29

    So I don’t know though like, I’m I the first thing in the morning I do every single day is I meditate and that’s it with my girlfriend set my intentions for the day. And it’s something that I’ve done almost every single day since I’ve been in the hospital. I eat healthy. I’m telling you. I ate so much garbage. One of my favorite things to eat pre-stroke was the Mcrib. That’s not even food,. It’s not even a real rib. It’s shaped like ribs as they press it to look like it has bones, it’s so weird It’s not food.

    Joe 40:59

    And it’s funny because, like the food that I eat now, it’s actually, changed my taste buds. I used to drink soda. I would drink more soda than I drink water. And now I haven’t I don’t drink soda ever anymore. The one time I think I had a soda was maybe like two years ago and it tastes a little it’s just chemicals like this are disgusting my taste buds change.

    Joe 41:18

    I have more energy. I’m much more functional. I’m a lot sharper than I was and I’m healthier. I’m down around 35 pounds because I was slowly killing myself. You know, I was depressed. So I realized I turned to food for happiness because I was miserable with myself. So I had a sugary drink. I had like, you know fatty foods because they made me feel good at that moment.

    Joe 41:44

    Yeah, emotional eating. I was like man, my day sucks. But like this Mcrib and soda, I feel great for these like five minutes but then like I felt lethargic afterwards. Like I couldn’t function. I was honestly I was killing myself. So now I am a lot healthier than I’ve ever been. I hike every morning when I take my dog for a walk, you know, it’s, it’s, again, I’m living more life than I’ve ever lived in my life.

    Bill 42:06

    Yeah, man, it’s such a great thing to come from a stroke. And I know a lot of people are not there. And a lot of people are experiencing a lot more difficulties as a result of their stroke, you know, vision problems, hearing problems, speech problems. That being said, you can still take a little bit of control back. And I think for me more than anything is that there are a lot of things in stroke, we can’t control, but we can control what we consume.

    Bill 42:29

    And we can control how we start our day, how we think, and who we hang out with. And that gives power and that gives support and that gives healing and encouragement. And it gives all sorts of things. And despite the vision problems, the hearing problems, and the speech problems. If you can take a little bit of control back, you will feel like a different person. That’s my experience is that your experience?

    Joe 42:53

    Absolutely 100%, what helped me is I never had boundaries before my stroke. I didn’t know what they were so I just kind of like, again, I was I didn’t know how to make myself happy. So I was a passenger and other people’s lives, and I wanted to help other people because my life was terrible. So I’m like, I’m gonna help you. Now your life is good so my life is good, no, I’m still miserable.

    Joe 43:16

    So as soon as you’re living your good life, it’s on to the next person. And I’m just like vicariously living through people. And specifically family. I just kind of like let them get stuck in this toxic negative spiral. And I would just get caught in that. And it would make me miserable, but I would just be stuck there. I didn’t know that I could just say no, I didn’t know that I could walk away.

    Joe 43:37

    So one thing that I have done is I’ve distanced myself from toxic people. And that has been one of the biggest things in recovery for me. It’s been amazing. It’s sad. So I describe it like this. We have evolved, right? You and I, are now beautiful butterflies, flying high, enjoying life. Now. We used to have out the caterpillars, we used to crawl around in the dirt. We can’t go back to crawling around in the dirt. So those caterpillars, they’re gonna have to evolve and join us because we can’t go back, you know, so my family unfortunately, they’re still caterpillars crawling around in the dirt. And they’re mad that I’m flying high and I’ve evolved into a butterfly. So I still have hope that they’re gonna reach me and come one day, but I know one thing I can’t go back to crawling in the dirt. I just can’t do it.

    Bill 44:25

    Yeah, and you’ve got to lead by example. And sometimes that’s difficult for other people to come on that ride. You do what’s best for you if you go back to being that guy that you were before. Man, that’s the guy that you were just before stroke. Like, that’s a dangerous place to be. That is not a place you want to go back to whoever wants to go back to their life how it used to be before the stroke. No, no, that’s not where you want to go.

    Joe 44:51

    Almost got you killed. It’s hard. The last conversation I had with my little sister. I love her to death but oh my gosh. She would kill me. Is she just complaining and complaining and complaining and stuck just where she is? And I’m I was at a new place where I was reframing everything, turning negatives into positives, and focusing on my circle of control, if I can’t control it, I can’t worry about it. And I said something, and she yelled at me, you know, not everything is good.

    Joe 45:24

    And without missing a beat, I looked at her and I said, you know, that’s true, things are terrible sometimes, but not everything is bad. And I choose to focus on the positive things in life, because I don’t want to get stuck in this negative spiral, and that’s when I pulled away and I needed to, like, let my family crawl around in the dirt until they’re ready to evolve, because they’re stunting my growth and it’s really sad. But I again, circle of control, I can’t control them. I can’t, I can only control myself, and I still have hope that they’re gonna figure it out. I hope so. But until then I can’t slow down my progress. You know, I have too much to do with the second chance that I have. I don’t want to waste any more time.

    Appreciate the little things

    Bill 46:06

    Yeah, I know you mean, and with the, with what you’re talking about. It’s how gratitude is important. Like, there’s a shift thing that’s happened. It’s a terrible time, we’ve experienced all of this loss, all of this, you know readjustment of our life we almost lost our life, all the things that were important to us, whatever. What’s good about it, though, like, what’s the one thing if there was anything good about all this terrible stuff? What’s the one good thing that you can be grateful about? Well, you know, I’m grateful that I didn’t knock my teeth out falling when I fell, like, that’s cool.

    Bill 46:37

    You know? All right. That’s it, just go run with that one. If you had knocked your teeth out well, that wouldn’t have been good. That would have been like adding salt to the wound. Okay, cool. So if you play that, what’s good about it game, or what could be good about it, if I let it be good, then you can evolve and it could turn into a mind that is looking for the good in every situation, even if it’s a bad situation, even if it’s a terrible time, a terrible experience.

    Bill 47:08

    And maybe you can’t do it right away maybe you can only do that in two weeks when you’ve had some time to reflect and get over it and whatever. But that’s how I did, my focus and how I sort of sharpened my mind. Because I could have focused on the fact that my dad had to drive me around, and he’s a shit driver. I could have had to, I could have had to focus on the fact that I didn’t remember who came to visit me and you know how to type in an email and, and all those things, you know, and it was like, there were too many bad things to focus on. So what’s good about it is you know what I felt I didn’t break my ribs or knock my teeth out. That’s pretty good.

    Joe 47:51

    It’s a great way to reframe and it’s a great thing to focus on. So being a recovering Catholic, you know, half glass half full half full, half empty. So I used to think, okay, the glass is half empty and the other half is full of poison. I just had this negative way of thinking. So I had to retrain my brain my girlfriend again, she has been incredible anytime I would get frustrated or upset or angry she would it would drive me crazy she would say, okay, now does it feel better to feel angry and upset? Or does it feel better to feel good?

    Joe 48:24

    I’m like, What? I would get angry. I would get really angry and then she would make me answer and I’m like, feels better to feel good. She’s like, okay, so like, let’s feel good. Like, I’m just being really angry. I’m gonna feel good. She’s like, just smile, because like it’s been proven if you smile, you’re in a better mood. So I’m just there angry to smile. But it made sense. It put me in a better mood and it helped me reframe things.

    Joe 48:52

    It helped me change the way that I think and it helped me break the pattern and negativity that I’ve lived my entire life, you know, and I hope that people out there’ll do the same thing. Now I’m not saying there’s this thing called toxic positivity, but I’m just finding out about and I think I was toxic and positive back in the day. Because, I would just be positive because I was afraid of the negative as opposed to like, I’m just positive because like I’m in a good place.

    Joe 49:15

    That shook me when I thought about that. Am I genuinely positive? Or am I just afraid of the negative? So I think right now at this point in my life, I’m super positive. I’m happy to be here when you said that you’re happy that you didn’t fall and smash your teeth. How amazing is that? You know, and if we want to break it down just like bare bones, how amazing is it to wake up every single day and take a breath? How beautiful is it? The one thing I will always remember and it’s the first day that I left the hospital on the ride home.

    Joe 49:48

    I looked out the window. I was like a dog like no a dog sticks his head out the window. I was like that. And I looked out the window and I saw the rustling leaves of a tree and I broke down in tears. Now I’m almost on the verge. It was the most beautiful thing I had ever seen. It was so simple, but it meant everything to me. So no matter how dark things get how upset, I get how frustrating it is. I remember that and it takes me back to wow, look how far I’ve come. I’m here. I’m here. I’m functional. I’m walking, I’m talking. I remember a lot of things, but not everything. But I’m here and that’s a big deal. And I want to stay in that zone. Because just like, it feels better to feel good, than feel bad, you know, and I want to feel good. I think that’s why we made it back.

    Bill 50:36

    Yeah, I agree. I am. I like to tell people who I know, who I have conversations with, about feeling angry or sad or upset or emotional, like, dare to stay there for a little bit, just so that you can go through it. So just play. Just allow yourself to have those experiences so that when you’re over and done with them when you’ve accepted that they’re just a temporary thing, you can move to the next phase or when you move to the next phase, you’ll know how good that phase is.

    Bill 51:08

    Because you’ve moved away from a phase that you have allowed yourself to observe. And if you don’t want to observe it, by fully experiencing it, do it a little bit distant, like, become the third person, step out of yourself, and observe yourself being cranky. And just get curious about how you’re doing cranky and why you’re doing cranky. And then change that and allow yourself to just like the butterfly emerge from that cocoon of anger, or whatever you want to call it, and see what’s on the other side and get curious about that. And when you’re there, again, step out of yourself, and watch yourself, experience joy and having fun and appreciating that, and then you’ll have this third perspective, like this different perspective of how you interact with yourself. And if you can do that, you’re going to be able to heal from the shit that we all carry with us, which becomes so much more amplified after a stroke if we’ve never dealt with it.

    Joe 52:12

    It’s brilliant that you’re removing yourself and you’re viewing yourself. That’s a great thing to do. I forever. So again, going back to being a recovering Catholic, I was taught not to talk to people. You have a problem. shove it down. just shove it down. Pretend Oh, okay, that worked for 39 years. And then my right basal ganglia exploded. So I process things out. Now I’m able to talk things through and I respect my anger. I respect my frustration. I respect these thoughts that I have.

    Joe 52:49

    The trick is and the biggest thing for me in recovery is I don’t get stuck there. And that’s a trick I think for everybody. I tell everybody if they’re mad if they’re upset, you know, and I wasn’t able to do this today, and I did it yesterday. Today, I can barely function and people get upset. And a lot of times, the first thing people will tell them is, oh, but don’t be mad, you’re here, you’re alive. You made it and like, Yeah, that’s great. But now we’re disrespecting the feeling of anger and frustration. You have to respect all the feelings.

    Joe 53:16

    So I tell people, be angry, be upset, be pissed off, break something, throw something, and then get over it. Now, the trick is just not to stay there. My co-host, helped me tremendously when I was having a pity party because I was having trouble with my hand, just mad couldn’t do it. And she calmly she’s like, okay, she’s like, have your pity party. She’s like, be upset, being angry. And then tomorrow, I’m gonna call you I don’t want to hear the shit anymore. And I was like, Oh, okay.

    Joe 53:48

    So I was upset and then I let it go. And then I’m like, I’m not perfect. It pops up again. But then you do. It’s it’s the rhythm and I’ll say this, I’m better, more than I’m worse. You know, like, I handle it more often than I don’t. And it looks, like we’re all works in progress, we just have to want to be better. You have to respect our feelings. And we have to move on from you know, like, so be upset, be angry. But then leave it alone just don’t get stuck there.

    Joe 54:16

    That’s just don’t get stuck there. And I know it like for me, it’s scary because I grew up so negative, and in such like a dark place that it feels good to feel that so like when I’m around people who are like, man, everything is terrible. The world sucks. People are awful. And in the back of my mind, I’m like, yeah, everything sucks because it feels good. And that scares me. That’s so quickly I can get sucked back into that. So I have to like to focus on okay, I can’t be around this. I have to like, either mentally take myself somewhere else or I have to physically remove myself from this conversation because I can’t revert. I just can’t You know, I’ve worked too hard to get to this point to fall back.

    Bill 54:57

    Can I ask you? Does it feel good or is it just familiar?

    Familiar VS Genuine happiness

    Joe 55:02

    Familiar? So here’s the thing I thought about that I’m like am I that weird? Am I genuinely like really? Like, do I feel good inside for this? It’s like an old girlfriend. Okay. You guys broke up for a reason. But if you’ve been struggling for a while, and you’ve been single for a while, and then you go back with a toxic girlfriend, you’re like, Oh, this feels so good.

    Joe 55:26

    No, it doesn’t. It doesn’t. Do you think it does? It’s horrible. It’s toxic. It’s violence. It’s miserable. But it’s familiar. So that’s, if you think it out. If you think not just for this moment if you think it all the way through. It’s just familiarity. It’s not happiness. It’s not joy. It’s not a good feeling. You know? And I think I’ve finally hit that point where I’m like, cool. I get it. I get it. My new normal. My new good feeling is feeling good.

    Bill 55:58

    Yeah. Awesome. And that way About what a gift to get from somebody to say, have your pity party go down their path for a little bit longer. And then let’s not do that tomorrow.

    Joe 56:09

    Yeah, I would be lost without my co-host like Lauren has been such a huge help for me and me for her like we, we have bonded, and she has family, you know, and she’s one of the few that can hit me up and say, hey, how are you doing? I’m fine. She’s like, no, seriously, how are you doing? And I’m like, Oh, there’s breakdown. And I’m like, Oh, yeah, you get it. She’s inner circle. Like she gets it. You know, and I think all of us need that. And it’s that type of community that I want to bring to the masses. You know, I want everybody to feel that because everybody deserves to feel that especially after what we’ve been through.

    Bill 56:48

    I agree man. Tell me about the Neuro Nerds podcast. So like, what is it about, and tell me about your co-host?

    Joe 56:55

    So the neuro nerds were put together out of necessity because I didn’t I know that this community existed. I was lonely. I was sad. I met Lauren at a party. And she was talking about her concussion when we met for coffee. And it was the most beautiful feeling the best feeling I had had since my stroke. And halfway through our conversation, I looked at her and I said, Oh, wait, like you’re a nerd. And she’s like, Oh, yeah, you have no idea because she’s, she’s a dance teacher. She teaches professional pole dancing. She teaches she is incredible. She’s bodyguard trained. She is a freak of nature. She is such a strange, beautiful person.

    Joe 57:38

    And you would never see her and be like, Oh, yeah, she writes fanfiction about Lord of the Rings. And she is she is the strangest, most unique individual I’ve ever met. So we decided just to start the podcast, so we had an excuse to meet once a week and connect. So when we really okay, we’re like the neuro nerds because we had neuro injuries. And we’re both nerds if not very, like really cool nerds. We’re like the new rock stars, you know? And so we come at it from a very different angle, a lot of things I was looking at people talking about stroke, it’s always negative. It was so negative.

    Joe 58:19

    Now, I’m not saying, let’s talk about the positive side of stroke. I’m just thinking, we didn’t make it back. Like, look, we can talk for days, how terrible things are the fatigue, the stress, the anger, the pain, you know, we can live that do we want to talk about that over and over and over again. So we come at recovery from a different angle. We come at it from a very happy fun. We live to enjoy life. So we want to end we want you guys to come with us on this journey of enjoyment and fun.

    Joe 58:55

    So we come at brain injury, recovery through everything nerd up. You know, we talk about our recovery through superheroes a lot. We’re big fans of like, the MCU me in particular, like my guy is Dr. Strange because I remember there was a scene in the movie where he’s because he had his hands torn up and I struggled with my hand I struggled writing. And there was a scene where he’s writing his name over and over and over again, it’s just chaos. I was watching, I just broke down in tears.

    Joe 59:21

    So we did an episode about like, what superhero fits our recovery, certain things like that, you know, and it’s been a lot of fun. So the neuro nerds, we are I say it every episode, the nerd nerds, we’re here to help. And we are genuinely here to help, you know. And it started as two selfish people just doing it for themselves to improve our recovery. And it’s turned into we’re now in over 40 countries, which I’m proud of, and I’m looking forward to continuing to grow the podcast.

    Bill 59:49

    It is nuts how many countries you get out to wherever I’m at about 50 countries. Yeah, yes. some of them have had like one download.

    Joe 59:58

    Hey, that counts. Is that download in another country that counts? You know you right now your life goals like that’s where 40 something and counting. So we’re trying to catch up to you. That’s such a beautiful thing like our message of, you know, post-stroke, thriving and recovery and the information that you’re putting out. It’s so valuable not just to where you’re at, but to the entire world. That’s such a beautiful thing.

    Bill 1:00:26

    Yeah. And how good is it like, I started selfishly as well was always going to be about me. And then quickly, I realized that it had nothing to do with me. It’s all got to do with all the other people who are contacting me saying, Man, thanks for that episode. I needed to know that thank you for saying this. And thank you for interviewing that person. And it’s like, Wow, so I tried to interview people and ask them, What happened to you? And then I talked about the after what happened after how did you know what are some of the issues you had to deal with, you know, how did you overcome them that type of stuff, and I didn’t realize that everyone who’s had stroke needs to have those conversations and here I thought I was the only one. So that made it impossible for me to stop doing it. I just don’t know how I’m gonna ever stop.

    Joe 1:01:10

    You shouldn’t so what’s funny is that before the stroke, I was part of the anti-social network. I never really dealt with social media at all. I was so I’m extroverted when I’m out, but I’m an introvert, I would rather be at home you know, I just so happen to have this bubbly personality. So when I started, Felise she was like, you know, you should tell your story, and things you’re doing with Lauren are great. And you start your blog and I’m like, yeah, I’m gonna do all this stuff and I’m I help the world. I’m gonna do all this stuff.

    Joe 1:01:39

    After about a week or two, the floodgates opened, people started reaching out to me, people started sharing their stories, people started every day, or people reaching out and I’m hearing this it was a flood of emotion. And two weeks into doing the neuro nerds and my blog and everything that I was doing. I was overwhelmed I couldn’t do it anymore. The day I was going to give up, there was a day where I was like, I can’t do this anymore. I just can’t. I just can’t do it. Because I just physically and mentally cannot do this.

    Joe 1:02:13

    There was a woman who reached out to me, I won’t say her name because she’s like a very private person. Her husband, she said, Joe, I’m reaching out to you, because my husband similar age, and seeing your story, seeing your posts, hearing your podcasts, reading your stories, has given us hope. And I even now little shaky, I broke down. And I that night, the exact day I was done, I was gonna take everything down.

    Joe 1:02:42

    And I just because I couldn’t do it. I slept and I woke up the next morning knowing that this was bigger than me. It’s not about me. I’m not doing this just for me. I’m doing this for the people out there that need this. There are people out there that need to hear that. It’s going to be Be Okay, there are people out there who need to know that I can do this, this person did it so I can do it too, who need to know that they’re not alone. So I will always be in debt to that woman and her husband because she got me on this journey. And just like you, I don’t know how I’m gonna stop this. And to be honest, I don’t think I ever will.

    Bill 1:03:17

    I felt unwell for an amount of time, especially after the thyroid surgery and all that kind of stuff. So I took a backseat, you know, but I stopped putting episodes Yeah, stop connecting to people and reaching out to people. And I felt like something was missing. And I felt like, man, something’s not right. You know, I need to start doing something again. It occurred to me that it was the podcast. So I slowly found a way to get it over the line and keep doing it. And I used to sneak it into when I had a day off and sometimes I would, because I was doing a job at some point I was working for somebody else.

    Bill 1:03:50

    I would take a sick day, and I would stay home and do a podcast interview or whatever. I did everything that I could to just keep chipping away at it keep getting over the line, and keep getting that next episode out. So, you know, it’s taken a heck of a lot of energy, but it’s kind of like that passion project and that hobby that, you know, one day, the guy wakes up and says, You know what, I need to create a train set, and I need to put it in my garage. And then before he knows that he’s got 10 sheds in the yard, there’s a train going through all of them. It’s running people over. There are explosions. Like I’m at that point, you know, I’m at that point where it’s going to next level next level next level, and I can’t it’s a monster. It’s got out of control. And I love it.

    The best kind of obsession


    Joe 1:04:36
    I’m so excited right now, like, seriously, you’re speaking my language, but I love that I do. It turns into almost an obsession, not a negative obsession, you know, in a very positive way. Because what we’re doing, it’s bigger than us. It’s bigger than you and I, you know, and I say it all the time. There’s a friend of mine who just started a podcast and she was like, you know, there’s not very many people are listening. And I was like, how do you know that? She’s like, well, you know, my numbers are low and nobody’s reaching out.

    Joe 1:05:01

    I was like, how many people do you know? Does that reach out to people? I’m that weird person that like I’m constantly reaching out, hey, I’m like trying to connect. I was like, but you know, when you go to a store and they give you either on the receipt, like oh, call and get like how it was the service? How many people call and say, Hey, I had amazing service, even if they’ve had incredible service? No, they just don’t have it in them. So that’s why we have to do this. We don’t have to do it for people like us. We do it for the people who don’t have it in them to reach out and say, hey, I needed to hear that, you know, and that’s why I’ll never stop always pushing like it’s turned into this obsession.

    Bill 1:05:39

    Yeah, it’s a beautiful obsession. I had somebody contact me from an almost like at the bottom end of the world, like compared to where you know, the US is and where New York is. And I had somebody contact me from New York and say, hey, I’ve had a stroke. And I’m wondering if you know any people in Manhattan who have had a stroke? I’m like, yeah, I do at least three people. What do you want me to yeah I want to put you in touch with them, you know, so I can connect with some people, no worries.

    Bill 1:06:11

    And then literally two days ago, somebody who was struggling with what they’re going through in their stroke, who’s in the UK, I was able to connect with them to another guy in the UK who is not a stroke survivor, but his dad passed away from a stroke, and it was on my podcast, and I was able to connect them to any man, like, that’s just insane that we can do that. And I don’t know who’s had a stroke down the street in my neighborhood, let alone what the heck’s going on in another part of the world, but that’s the power of podcasts. That’s what it is meant to do.

    Joe 1:06:47

    I feel that in my soul there in California, I’m from LA. So like, I don’t have a lot of shrimps of items that I’m actually in contact with here. To be honest in Australia. So many many, so many people I’ve connected a couple of people in Australia. I’ve connected with several people in the UK and Singapore. As soon as you mentioned Manhattan. I was like, Oh yeah, I know several people in Manhattan. You and I do the same thing. It’s like I feel like I’m a connector if I know where you are, who you are. I want to connect you with somebody else. Because I know what it feels like when I met my first stroke survivor in person. It was Bridget Shiavari. She’s a photographer from Arizona. She’s also batshit crazy.

    Joe 1:07:30

    I love her so much. When I met her in person, I met her family. We were online like we were chatting to all of you in your area. I’m so nervous. Like I was my housemate at the time. I came out and he was like, are you wearing cologne like I sprayed so much? It was like you know when you’re nervous on your first date, and I was like, I put so much I know I’m nervous. Like I was just so nervous. But when I met her, she became instant family. And just like when I first met Lauren, I felt like I turned a corner in my recovery because there were other people like me, you know, and I want that feeling for everybody.

    Bill 1:08:09

    Yeah, I agree with that instant family stuff, the connections that you can create in such a small amount of time are like never before. And like I feel that with you, and I feel that with most of the people who I interviewed, because they’re kind of at that stage, too. They’re seeking people who get them to understand them and all those types of things. And, it’s never been better to experience a stroke as far as connectivity and learning and understanding and growth and not feeling isolated. It’s never been better.

    Bill 1:08:42

    And I just, I’m blessed that it’s happened in this time. It’s allowed me also to be a little bit creative and express myself in ways that I was never able to do before and I never had an audience. And you know, what I love the most about isolation is that all these frickin Ellen DeGeneres and all these people who get paid $70 million a year to some crazy amount to do all these amazing shows that they’ve got studios and artists and graphics and all this crap, they revert it to our method. They all came back to our method. Let’s sit in front of a computer in our house. And let’s record a podcast episode. Oh come on guys, you could do better than that.

    Joe 1:09:27

    It’s a weird world we live in. You know, it is. And it’s funny that this isolation has been it’s been intense. It’s been very strange and has been very intense. But it’s also helped me look, our fire burns out every once in a while, you know, it’s our job to reignite it. And I think it’s been reignited because I’m here like, I’m kind of an introvert. I would rather be here if I had an opportunity. If I had a choice. I just wanna stay home.

    Joe 1:09:53

    But the fact that I don’t have a choice, it’s kind of like messing with my head. And then it just gets me thinking, oh, if I’m feeling this way, how about Is everybody else feeling? I have to I have, like, I have that need, I just have that thing. I have to reach out to these people, I have to connect with these people. I have to make sure that these people are okay. And connecting with other people. So like it’s been this amazing, passionate thing that’s reignited my flame for connecting our community.

    Bill 1:10:20

    Yeah, I agree with you. Isolation is tough. For some people. For me, it was just familiar. I didn’t feel like there was much of a change in my life. It was just, you know, I’ve been here before I haven’t been able to go out before I haven’t been able to work before. So it was all kind of familiar and it didn’t faze me too much. But then some people are at that stage where they’re getting rehabilitation and therapy, and they’re going out and about, and that stopped happening. And then that made it difficult because they were keen to do the rehab to do all that stuff.

    Bill 1:10:50

    So, you know, this episode is for them. It’s for every single other person who’s ever been impacted by stroke. If they want to download an episode and listen to it. Maybe you can they can get something from it and, and make them feel a little less. I don’t know what freaked out. So, you know, I love that there is more than one podcast that is being run for the same kind of purpose. And how good is it that if somebody wants to listen to an episode of Neuro Nerds they can do it from anywhere in the world and it costs them nothing? That’s even better. We can do this for them, and we don’t have to take any money from them.

    Joe 1:11:29

    It’s amazing. I love that I honestly do. Because I understand. that in recovery, a lot of stroke survivors, live on a very specific budget. You know, we can’t just be shelling out cash to do these things. So this is a beautiful way to give back, you know, to the community. What’s funny is my podcast. I’m a pretty energetic guy. I didn’t realize my friend, Briney from Yorkshire. She said something about listening to podcasts. I was like, Oh, better than mine. She was like, No, absolutely not. Wait, what? What She’s like Joe. You’re too much. She’s like I was trying to relax and rest your way to high energy. And I was like, Oh, yeah, I guess so I guess I am. Just a fair warning I’m a lot sometimes.

    Bill 1:12:14

    Feedback is Interesting, isn’t it? I get feedback, I got feedback for one of my Instagram IGTV posts that I did recently. And I walk around, you know, I use my phone, I bring it to my face, and I walk around sometimes. And the feedback that I got was from a guy who said to me, dude, it felt like you were trying to climb into the camera. And I thought, well, thanks for the feedback. I appreciate it. It was the first time that I did a walking chat on Instagram. And, you know, whatever.

    Bill 1:12:48

    I’m sorry that it made you feel that way. Nobody else complained. But it’s okay that you don’t feel comfortable with that because he’s a stroke survivor. And it must have been that perhaps the movement or something was overwhelming his senses and he couldn’t deal with that. He felt the need to tell me and I thought, awesome. Thank you for telling me whatever.

    Joe 1:13:08

    People are cool. I love constructive criticism, I do. For the most part, it’s mostly because we talk about a lot of nerdy things. And then like, I’ll just say, Oh, well, actually, this movie in DC, it’s like really like nerdy stuff that I get, like the most feedback from, but I think it’s beautiful that people like, share how they feel about what we’re doing. I think it’s great, you know, and I only know how to be this. I mean, I’m a very energetic person, for the most part. I’m like, really, really positive. And I don’t want to get stuck in that pity party. everything sucks mindset.

    Joe 1:13:09

    So I make sure that you know, I stay in this positive place and I hope that people vibe with that, you know, because, yeah, things suck. Sometimes they do. Oh, we can we can process that on our own. You No, but if we’re gonna do this together as I feel like our podcasts like we’re doing this like we’re all in this together, I say all the time, I truly believe that we’re not going to be in this together in a negative way. We’re coming at this in a beautiful positive way. And we’re going to get past this together we are.

    Bill 1:14:13

    Yeah. And you know, what I like is you know, your energy level staying there being energetic is for me when I’m in that way as well because I’m not that energetic, my podcasts a little bit more sort of mellow. Because that’s the kind of person I am. But when I’m not energetic I notice my deficits more, I notice, my challenges on my left side more when I’m doing the other stuff that I’m enjoying when I’m having it out with Joe on the podcast, and we were getting excited, and we’re talking loud, and I’m waving my hands, I don’t notice all the stuff that’s wrong with me, you know?

    Bill 1:14:50

    And that’s kind of why I also like to stay in that space. And that’s why, you know, hopefully, people listening can understand why it’s really important for everyone to be in the space that they want to be that’s good for them. And, and some people vibrate at a higher energy than me.

    Joe 1:15:06

    I hope those people feel what we’re putting out. Because if I’m excited if you’re excited that energy, I want people to feel that this conversation that we’re having when we’re sharing the things that we’re sharing, I want them to feel that I want them to feel like wow, I want to connect with a fellow survivor like that because I want that feeling. You know, that I desperately want that for everybody.

    Bill 1:15:29

    Yeah. And it’s heartfelt so well, there’s no better place to come from if you’re coming from this place, being heartfelt well, we love the feedback and we love the fact that you can’t listen right now. Even that’s okay.

    Joe 1:15:41

    Oh, for sure, for sure. You know, especially like I love constructive feedback, not toxic feedback. I have a hashtag for 2020. It’s 2020. Hashtag 2020. Don’t be a dick. Like really because there are people out there who are just in this negative space and it takes less energy to be nice and do nothing than it takes to ruin somebody’s day with words or actions, you know what I mean? So especially now in the current climate, let’s just be kind, we can’t lose our humanity. Like, let’s just be kind of nice if there’s something that you don’t like about like, you know what you’re doing what I’m doing? Cool, like, let’s have an adult conversation, you know, and we’ll like, come up, we’ll figure it out together as a community as a people, but we can’t just be mean gross, disgusting people. Like we just can’t.

    Bill 1:16:28

    I hear you, man. That is a beautiful way to end the podcast episode. It has been an amazing pleasure to get to know you a little bit more and to learn about your podcast, The Neuro Nerds. If somebody wanted to find your podcast or connect with you online, where’s the best place for them to go?

    Joe 1:16:44

    The best place to follow me is at Joe so rocks everywhere. You can also check out my blog at joesorocks.com. You can follow the neuro nerds at the neuro nerds everywhere on Facebook on Instagram. You can also check us out at the neuro nerds.com. That’s our website. And any you your favorite podcasts wherever you listen to podcasts we’re there.

    Bill 1:17:04

    Awesome Joe

    Joe 1:17:06

    This has been awesome I appreciate you so much like really I am super vivid with you I love your mindset I love your energy and I’m looking forward to like, you know, conversing more and I would love to have you on the podcast we’re working on.

    Bill 1:17:19

    Man, I look forward to doing that man. I appreciate the opportunity to share your podcast with your audience, that’s the whole reason why I do this. It’s to bring more people to more people. That’s it. That’s why we do it.

    Joe 1:17:36

    Keep doing what you’re doing. Yeah, keep doing what you’re doing, never let up because it’s nice to know that there’s another sick person out there that has the same illness. I do. passion and love for our community. So I appreciate everything that you do and we’ll continue to do so sincerely, thank you so much. I appreciate this. This has been amazing it’s been great getting to know you.

    Intro 1:18:00

    Discover how to support your recovery after stroke and go to recoveryafterstroke.com

    The post High Blood Pressure Caused a Stroke – Joe Borges appeared first on Recovery After Stroke.

    1 hr 19 min
  • Cavernoma – Ginger Burden

    Ginger Burden had a Cavernoma in her brainstem three years ago that caused her to have double vision in her right eye that eventually required surgery about a year and a half later.

    Instagram: www.instagram.com/ginburd/

    Highlights:

    01:03 Introduction

    02:59 Cavernous Malformation
    09:48 Facing the new reality
    16:46 The Recovery After Stroke Podcast
    24:15 When partners become stroke carers
    32:52 Caring for animals while recovering from a stroke
    39:33 Focus on things to overcome
    47:29 A stroke recovery mindset
    54:55 Identifying the signals

    Transcription:

    Ginger 0:00

    I think learning how to adapt to the outside world with whatever physical limitation I’m experiencing at the moment, the vision or balance or whatever, figuring out how to not get overwhelmed and stressed out when I go out in public and go into new situations. Because I want I mean, I very much am a person who likes to be out doing things and I don’t want these things to stop me.

    Ginger 0:28

    I want to figure out a way to be comfortable, kind of no matter what. So I know that sounds kind of vague, but I’m trying to kind of approach it from like you know, broad, bigger picture kind of Outlook so that I can be adaptable because you know, in my situation, you know, yeah, good days, your bad days, bad weeks, good weeks, you know, I want to be able to enjoy life kind of no matter what.

    Intro 0:57

    This is recovery after a stroke with Bill Gasiamis. Helping you go from where you are to where you’d rather be

    Introduction


    Bill 1:03
    Bill from recoveryafterstroke.com. This is Episode 97 and my guest today is Ginger Burden. Ginger experienced the brainstem stroke and is recovering from the physical impact surgery had on her body and vision. Some time ago now I launched the recovery after stroke coaching people who are being coached by me are getting the support they need to find solutions to their challenges including fatigue, anger, and isolation, amongst other things, especially in this time of Coronavirus, isolation, getting to support and staying on track with your recovery has never been more important.

    Bill 1:39

    If you’re a stroke survivor who wants to know how to heal your brain overcome fatigue and reduce anxiety. recovery after stroke coaching might be for you. If you have fallen in the cracks between hospital and home care, and desire to gain momentum in your recovery but do not know where to start. This is where I can help.

    Bill 1:57

    I’ll coach you and help you gain clarity on where you are currently. In your recovery journey, I’ll help you create a picture of where you would like to be in your recovery 12 months from now, and I will coach you to overcome what’s stopping you from getting to your goal. Right now, everyone is interested in learning what recovery after stroke coaching is all about.

    Bill 2:18

    You get a seven-day free trial to decide if it’s the right fit for you. So take advantage of the seven-day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching, if you are listening online, and now it’s on with the show. Ginger Burden, welcome to the podcast.

    Ginger 2:39

    Thank you so much. I’m happy to be here.

    Bill 2:41

    Thanks for being here this is a bit of a big thing for you because it wasn’t that long ago that you decided to start being a little bit more active and a little bit more public about what’s going on for you. What happened to you?

    Brainstem Surgery


    Ginger 2:59
    Oh, gosh. Hopefully, I can kind of keep this sort of brief enough. But, it kind of started about three years ago, I woke up one morning and had double vision in my right eye. And it turned out that I had a cavernous malformation in my brainstem. And they didn’t want to operate right away. They tend to kind of watch and wait. So we did, but it turned out I had to have an operation anyway, About a year and a half later.

    Ginger 3:25

    So I had my first surgery to remove the cavernous malformation from my brainstem. And the surgery went, Okay, as far as these things go, I did come out of it with the facial weakness, and also some damage to my left eye, which they were not expecting. It doesn’t have a full range of movement, it kind of bounces a little bit like it’s on a trampoline kind of.

    Ginger 3:52

    And then so that’s what happened with the first surgery and then about two months later we discovered that they had not gotten all of the cavernous malformations out and it bled and created a significant hemorrhage that they told me that if it had happened to anybody else it would have killed him. But since I had had the surgery, it created kind of like a cavity for the blood to collect in.

    Ginger 4:22

    So instead of killing me, it just did lots of damage. So I had a lot of damage to the left side of my body. And I had very limited mobility in my left leg and left arm. For a long time, I was completely numb from the top of my head down to my toes. And this event, this hemorrhage is what I later learned was, it was a stroke.

    Ginger 4:49

    But they didn’t tell me that right away. They were just focusing on the hemorrhage and getting the hemorrhage fixed. So I went in and got a second emergency surgery and from what we know what we think they were able to remove the hemorrhage and the cavernous malformation, hopefully, and the surgery went well, and I went into inpatient rehab to learn how to walk and kind of take care of myself again, and I was inpatient rehab for that 10 days. And then I went home, and I’ve been doing outpatient rehab and kind of home recovery ever since.

    Bill 5:28

    Wow, what a journey. And isn’t it interesting that doctors will treat a hemorrhage, but they won’t necessarily talk about a stroke? And I went about two and a half years before somebody finally said to me, the hemorrhage that you had was kind of like a stroke, but we don’t call it that because it didn’t begin like that. It created a stroke.

    Bill 5:52

    But that’s not what it was. Exactly. And you didn’t get dealt with by the stroke team. You got dealt with by this other time and I’m like, but all that you issues that I’m having is stroke issues. That would have been great to know two and a half years earlier so I can connect with people who are going to help me out early on.

    Ginger 6:09

    Absolutely. I understand. I remember when they sent me to the inpatient rehab, they put me in the stroke ward. And I was like, wait a stroke ward. I didn’t have a stroke. They’re like, Yes, you did what you had, essentially was a stroke. And then they treated me luckily, and I guess I’m lucky for that. They’ve kind of treated my symptoms and my recovery from a stroke point of view. So in that way, I think I’m probably pretty fortunate.

    Bill 6:35

    Yeah, you had double vision in you said one I was one of the symptoms, how did you get double vision in one eye or what did that mean?

    Ginger 6:45

    The bleeding from the cavernous malformation caused six-nerve palsy, so one of the nerves that connect from your brainstem is damaged and the eyes start to drift inward and it doesn’t have full mobility. In fact, before my first surgery, it kind of had started to heal and started to get a little bit more movement. But then once the surgery happened, it damaged the nerve pretty badly. So it’s worse off than ever now. So basically, you know, just the I just doesn’t move properly, they don’t move together. So I have to read the patch to help me see essentially

    Bill 7:26

    Yeah, because the other eye’s perfectly fine and healthy and

    Ginger 7:31

    Well like I said they they did do some damage in the first surgery. Yeah. At first, it also could not move fully from left to right. that’s gotten better. But now it constantly bounces like this like a trampoline so they think that that was all but they don’t know I’m doing eye therapy to try to help that out. But we will see.

    Bill 7:58

    I had an interview with a lady called Maggie Whittum, she was Episode 47. And the episode was called The Great Now What? Maggie talked about double vision and this bouncing of the eye that constantly happens that makes it challenging for people. So what aren’t you able to do with regards to now the way that the vision is with that eye?

    Ginger 8:25

    Well, before this, I was a graphic designer. So a lot of visual work I was not able to do that. Unfortunately, since then, driving, I haven’t been able to get back to driving and that’s a combination of vision and mobility I have very little use out of my left arm and hand. So I could probably maybe manage it, you know, on a straight, quiet road, but I haven’t tried it. It might be a while before I do that. For the safety of myself and others.

    Bill 8:56

    Yeah, that’s a bit of a scary thought. I thought the same thing. When I first got back into the car, I thought, like, What if something happens again? And what am I going to do if I black out and hurt somebody I was motivated not to drive. But then as I started to get better and start to feel confident about it, I didn’t go for a drive on my own the first time I went for a drive with a family member, and then later on, I went on my own but yeah, that means that you would have a lot less ability to get out and about and therefore you’re in the house more often.

    Bill 9:32

    And is that kind of how it started? To for you to turn into this kind of person who was not prepared to put herself out there and talk about what was going on? Is that how that started? Or did it come about another way?

    Facing the new reality


    Ginger 9:48
    Yeah, I never expected like, honestly, the hardest part of all this was coming home and starting to kind of like face would happen to me. Now all of a sudden, I can’t imagine being in a wheelchair for a few months after getting out of the hospital, I couldn’t get around, I had to have help doing everything going to the bathroom getting dressed, I couldn’t get off the couch on my own at first and you know, I, I struggled with that I just didn’t feel like me anymore.

    Ginger 10:18

    So I didn’t, you know, it was just hard for me to kind of connect with other people. And then when I did start to try to get out and about, it was just really hard, it’s just overwhelming, you know, physically overwhelming, the vision issue was kind of like keeping me from wanting to go places and it would be it would just kind of throw me off and all of my balance issues and body issues would sort of get worse with like the stress around that.

    Ginger 10:46

    So I just kind of stopped going places. It was just it just became too much. And then you know, over time, I worked a lot on my mental and physical health in strings and so over time started to kind of connect that a bit and was wanting to connect and talk to people and share. This kind of knew me, I guess. And then all this, the COVID-19 stuff happened and we all went back and had to stay in our homes.

    Ginger 11:17

    So it was kind of like odd timing for me. But honestly that sort of prior isolation, in some ways might have helped me be able to cope with this situation a little bit more, maybe that’s kind of like the positive I’m sort of trying to bring to the situation.

    Bill 11:39

    Yeah, I agree with that. I speak to stroke survivors every day. And one of my coaching clients is going through some challenges with COVID-19 isolation in that she’s reasonably early on in her recovery and as a result of that, it’s making it a lot harder for her because she’s focused on recovering. And she’s a real trooper and a fighter and she just wants to get out there and make things happen and she can’t.

    Bill 12:05

    And although she’s not the type of person who is going to be out and about all the time, she missed the opportunity to go to a physio to rehab all that kind of thing. And it made, does it, it made her focus on what she can’t do more than what she can do. Because she’s other circumstances are restricting her from what she can do.

    Bill 12:31

    I was nearly eight years out of that first stroke, and my surgery was in November 2014. When we went into lockdown, it was kind of like, well, I’ve been here before, like I get it, I get not being able to get out and about and not doing things and whatever and it didn’t bother me so much.

    Bill 12:52

    And it’s been a good opportunity to not do too much to not exert myself and to not overdo things. That being said, I’ll be glad when I can get out and about and catch up with people. But it was familiar, the whole the whole lockdown type of existence was familiar and not disconcerting. Like, there was no issue for me.

    Ginger 13:24

    Yeah, I can relate to that, too. Sometimes I kind of wonder if you know, I’m gonna get too comfortable, you know, with the notion of staying home, and then you know what I am kind of confronted with the opportunity to get out, you know, am I going to be kind of once again, more wanting to isolate a little bit more and I don’t want to kind of put myself in that space, you know, so I’m working hard to prepare myself and stay as connected to people as I can in any way that I can you know, in the situation.

    Bill 14:02

    Yeah, you don’t seem like you’re going to go down that path, you contacted me, you’re keen to get on the podcast, and your posts on Instagram started to reflect somebody willing to get out there and start talking. And I know that when you start talking, it starts to heal you and it starts to get that stuff off your chest, and it starts to make you feel better.

    Bill 14:22

    And the more you do that, the more you want to do that. And if you’re connecting with the right people, then it’s much more. There’s much more of a reason to go out and connect and share when I was connecting with the wrong people, people who don’t understand stroke. And fair enough, they don’t understand stroke, it used to frustrate me that they would do the whole well look right.

    Bill 14:33

    And therefore, based on how you look, everything must be amazing. And that was challenging because I didn’t want to go into a real long-winded conversation about how I was feeling and how that has changed my life. After all, they weren’t A. equipped to handle that kind of information. And B. I don’t know that it would have made a difference to their perception of stroke because they’ve never been through it.

    Bill 15:11

    So just kind of go along with it. But then when I connected with stroke survivors through Zoom or in person, it felt better. And I kind of found a group of people who, what’s the word group of people who just got me they got me and we got to this weird place in the shittest away but now that we’re here, we get each other.

    Ginger 15:39

    Yeah, that’s amazing. And I haven’t you know, I’m kind of searching for that a little bit. I know that there are groups here and groups online. But I haven’t really up to this point been very active in like searching for it, but I feel like even just like a little bit that I’ve done in this, you know, your podcast and your Instagram account.

    Ginger 16:04

    And doing this right now is like a huge help and makes me it kind of validates my experience and kind of makes me feel normal because everybody else in my life, you know, no one has experienced something like this. So I feel just kind of different than everybody most of the time, but so I can understand what you’re saying like finding people that can relate to you in some way, is a huge part of like just feeling better about yourself and your situation and your experience and everything else. So I want to thank you for having a podcast like this and for giving people a chance to connect in this way.

    The Recovery After Stroke Podcast

    Bill 16:46

    Yeah, my pleasure. I mean, it started as a selfish thing. It was all about me really, at the beginning. And then I realized, hey, this is strangely not about me at all the amount of people contacting me saying it was the right episode. They needed to hear that story or thank you for sharing that. I realized quickly. Oh, okay, it’s not really about me nobody gives a crap about me.

    Bill 17:08

    And I’m not saying it that way they care about my story. But I want to hear from other people, right? And I’m like, all right, well, let’s run with it. And the more people who contact me and tell me, the more I can’t do it, so we’re nearly at 100 episodes, and I’m so stoked that I’m there. And every single one of those people who has contacted me to be on a podcast or who I’ve contacted, I mean, we’re talking about every one of them has had a stroke, or is caring for somebody that had a stroke.

    Bill 17:43

    And no matter if we’re at 100 episodes, not one of those stories is the same story, and not one of those people has the same problems. They have similar challenges to overcome, but everyone is unique. So when you put out a new episode, it sounds like the same but people come out of nowhere and go wow, like I can relate to that episode.

    Bill 18:06

    It’s not that different from the one before, but they related to the one that got them thinking or changing their mindset, or feeling like there’s hope and, more importantly, feeling like they’re not alone. It’s not just about them. So thanks for saying that. And I appreciate it and it’s just brought so much joy to me to be able to do this. I was gonna ask you how old were you when you had the first bleed.

    Ginger 18:38

    I guess it was three years ago. I was 36 or 37. I think I don’t know. Something like that. 36 or 37?

    Bill 18:55

    So 36 or 37. Excuse me were there any signs that a stroke or a bleed or something was coming on? Did you notice anything different in the days leading up to it?

    Ginger 19:10

    No, not at all. I mean, I woke up and then double vision and am going downstairs and be like, I can’t, I can’t see I don’t know what’s going on. , my family in the doctor I first went to thought it was just a sinus infection symptom, said a sinus infection at the time, they thought I just had blurred vision or whatever.

    Ginger 19:33

    I went to an eye doctor and she said, I think you need to have an MRI so I won’t get one. And they found this shadow of what they said at first and then I eventually went to a neurologist and that’s when they kind of consulted with other people and other neurologists and they determined that it was a cavernous malformation. Of course, I didn’t know for sure until they got in there and looked at it. But you know, also signs kind of pointed to that being the case and it looks like they’re right about it,

    Bill 20:05

    They can’t see it because the blood is still in there obstructing the view. So, an MRI is not conclusive, and I got a similar diagnosis, there’s a shadow on your brain and we don’t know what caused it. And then they went down the path of you know, it could be tumor, it could be cancerous. It could be this, it could be that.

    Bill 20:25

    And they didn’t know in my head, they didn’t know for about two years, because I opted not to have surgery. And then slowly the blood was small in size, and then it got really big, the second blade, and then it got really small as it started to get absorbed and sorted out by my head. And, then they were able to see what caused it but it took about two years.

    Bill 20:52

    And finally, after the third bleed, they figured that they needed to go in and resolve that and get rid of it. And that’s when all the major challenges sort of happened to me as well. So other than the blurred vision how long did it take before you went from blurred vision to the hospital to do that MRI? Was it a lot of time that elapsed?

    Ginger 21:21

    I think it was about two or three weeks, maybe two weeks.

    Ginger 21:28

    Because I just wasn’t talking to the right people, honestly. And they just thought it was they just didn’t think anything about it is, you know, again, I thought it was a sinus infection or something. And I kind of saw various people before I saw, you know, some qualified neurologists that I’m still seeing To this day, and they didn’t want to do surgery at first, you know, they’re like, we don’t want to go into your brainstem it’s dangerous to do that.

    Ginger 21:56

    Let’s just watch and wait and see what happens. And at first, you know, look like it was resolving, or at least absorbing, or at least not being active in bleeding. So after about eight months of checking on it, we decided to wait a year for the next scan. And fortunately, in that year time, it grew in blood. And we’re in I think I had, you know, a few different episodes, mini-strokes, you know, in that time that I just didn’t even know about. So by the time I got the MRI, they’re like, oops, it’s too big. We got to go in there and get that out.

    Bill 22:36

    How long were you in hospital?

    Ginger 22:39

    The first time I was like three or four days, and I didn’t even need any kind of rehab afterward. I just went straight home. Then the second time after the hemorrhage and the stroke, I was in hospital and rehab all together about three weeks. Cuz I was in the hospital, they’re kind of like waiting to stabilize me before the second surgery, waiting for my surgeon to like, kind of get prepared. So I was in the hospital for about a week before the surgery and then a few days after, and then rehab for about 10 or so. days after that.

    Bill 23:19

    Yeah. And then you’re at home and who was with you at home were you around family?

    Ginger 23:26

    My husband was here so he stayed with me the entire time in the hospital, like in the room, he stayed with me in rehab, and then obviously here and he had to do everything for me, and as I said, I couldn’t go to the bathroom on my own. I couldn’t get dressed, I couldn’t get my food or anything like that for a long time.

    Ginger 23:50

    And so he had to do everything and work, and take me to appointments and do, you know, errands and cooking and all that kind of stuff. So caregivers are amazing. We just never would have imagined everything that would go into something like this. But now I got much more independent, you know, much, much, much more independent. But those early days were rough.

    When partners become stroke carers

    Bill 24:15

    Yeah, I remember what my wife went through, she was the same for me. She was the person who did everything and she was navigating the whole thing on her own I was spaced out in my head and didn’t know what was going on. I was my emotions were all over the place. I was cranky and abusive at times and all sorts of things.

    Bill 24:36

    And she was just running with it kind of like in some kind of like an automatic kind of mode. And she had to be there for nearly three years. By the time everything was sorted. She had to be there for nearly three years, you know, and just can’t imagine what that was like. She put her whole life on hold for me.

    Bill 25:01

    And she had been doing that for my kids already. You know, she was a mom of two teenagers at the time. So I can’t imagine what was going through her head and I’m grateful for her. She made a massive difference to my being able to heal and recover. So then things started to get better did your husband How was he about leave you at home alone? How did he start to come around with all of that? Because I imagine there would have been some anxiety about that.

    Ginger 25:33

    Well, I really couldn’t be alone for a while. So he had to go somewhere. I’d have somebody here with me for a few months and then eventually, you know, as I started getting more independent and capable, and strong you know, he can leave me now as an issue but you know, it took a while and didn’t like you know, if I wanted to go somewhere, very occasionally I would go somewhere with a friend.

    Ginger 25:56

    He would have a hard time with it because you know, it just kind of no what I was going through and like how kind of like fragile I was, you know, just kind of made him nervous to like, you don’t think of me kind of being without him to like, catch me if I fell or whatever, got sick or something so that was an adjustment you know, but we finally got into a good routine with that.

    Bill 26:23

    Yeah, he had finally started to let you go.

    Ginger 26:28

    Yeah, I mean yeah, like I said, I couldn’t even shower or go to the bathroom or get dressed or anything on my own for a long time. So you know, even though that’s not something that we enjoyed it it kind of creates like a was a dependency but like a bond. Like once you like I started becoming more independent. It was a good thing, but also I think it made him just nervous to kind of like, let me start doing those things on my own.

    Bill 26:59

    Yeah. Ginger, are you comfortable with me talking about intimacy?

    Ginger 27:03

    Sure.

    Intro 27:05

    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, how long will it take to recover? Will I recover? What things should I avoid in case I make matters worse? Doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 27:30

    If this is you, you may miss out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free.

    Bill 28:17

    So, like me when a stroke happened, there was no intimacy. And then I had a little bit of anxiety about going back there because it was a blade for me my scenario playing in my mind was a high blood pressure episode was another blade, and I didn’t want to do that to my wife in an intimate moment, but let’s get back to that.

    Ginger 28:43

    I asked my doctor about that so I can understand your concern. Um, and she said, Oh, it’s fine. Um, but you know, for me also because I have suddenly disabled and like, I don’t have the use of half of my body. That creates kind of a whole new set of obstacles. So, you know, it’s been just, you know, it’s been challenging, but, you know, that’s everything requires a lot of open communication and patience and time, and trust. And, you know, it’s a it’s a process. It’s a journey, you know, nothing’s perfect, but, you know, we’ve been able to kind of like, work through that a little bit. Yeah, not easy, but, you know, put in the time and effort and it’s getting easier.

    Bill 29:33

    Yeah, that’s such a good thing to put time and effort into, isn’t it?

    Ginger 29:37

    Yeah, I would say.

    Bill 29:40

    The reward is well.

    Ginger 29:43

    Right.

    Bill 29:45

    Well, I’m glad that you guys are getting there. Hey, your name is Ginger. From the photos that I see and from the image in front of me you have ginger hair.

    Ginger 29:56

    A little bit. Yeah. And it’s kind of purple on the ends I don’t know if you could tell or not.

    Bill 30:02

    And you’ve got two cats that appear to be ginger.

    Ginger 30:04

    They are yes they are. I’m surprised they’re not running all over me right now.

    Bill 30:08

    There’s a bit of a ginger theme in your family.

    Ginger 30:11

    There is there is yes,

    Bill 30:13

    The cat seems to get harassed and one of them’s wearing your eyepatch.

    Ginger 30:18

    He loves it. I guarantee. He loves to wear hats eyepatches and wigs.

    Bill 30:24

    Yeah, I’ve seen the one. That’s hilarious.

    Ginger 30:29

    I’m sure he’s thrilled by it. Yeah.

    Bill 30:32

    And then there’s the photo with both of you. next to each other. You’ve cropped the photo and you’ve got him and you with the eyepatch on.

    Ginger 30:41

    With the matching eyepatch yes.

    Bill 30:42

    That’s hilarious and then there is and then there’s another one with a toy cuddly lion that’s on top of him.

    Ginger 30:50

    Mm hmm. They’re two different cats like they’re twins. They’re twin brothers. So the pictures are yeah. Is it one or the other? Yeah. They’re very relaxed, like, chill cats, they tolerate almost anything luckily.

    Bill 31:08

    One of them’s got some kind of a jar, or a frame a hat anything on their head.

    Ginger 31:14

    Yes. Yep. very patient cats.

    Bill 31:18

    They are very patient cats. So tell me about what’s it like to have an animal in your life because a lot of stroke survivors who end up being alone or end up being stuck in their home or whatever, may not realize that animals can be very therapeutic at times. Are you somebody who gets a lot from that?

    Ginger 31:39

    Yes, yes. I mean, they are very, I like to think that they’re very intuitive. So especially at first when I was just laying in bed and the wheelchair, they were very confused, you know, because I couldn’t pick them up. I couldn’t bend down to pet them, but they would just stay on me all the time like laying I mean, I would be in bed and they would be one or both would be on me all the time.

    Ginger 32:04

    And then they always wanted me to play with them and I couldn’t but now that I can, you know, it’s so rewarding. I mean, I get, you know, a lot of the exercise I get is chasing them around and picking them up and doing things. So I mean, I can’t imagine not having them here. And being away from them for three weeks was hard.

    Ginger 32:24

    I went into the hospital when I was having that hemorrhage and going into the hospital and saying goodbye to them was like, so difficult. Because I didn’t know if I was going to see them again, what kind of condition that would be, and when I came back, so it’s just been like, I can’t even find words for how rewarding it’s been to have them here and now healing for sure.

    Bill 32:49

    They are fur babies and I

    Ginger 32:51

    They are

    Caring for animals while recovering from a stroke


    Bill 32:52
    I used to hear that and think oh, that’s a bit cringy but it’s not when I think about my experience with animals, we’ve had animals in our home. Since I was a baby, they have always had cats, so I have this unique relationship with cats and animals. And I never really considered how much they do. Just by being passive and being needy and whiny and whingey. You know, they stimulate conversation because I yell at her so to speak, I said, listen, you know, stop behaving that way, or don’t go there or get out of there, or stop making a mess with your food and.

    Ginger 33:32

    And does she listen to you?

    Bill 33:34

    Never, she kind of does that. And then she just ignored me and kept doing whatever she wanted. But the beauty of it is, is that that’s creating a conversation and a stimulus somewhere. And then because cats are so needy with regards to when you get home, if they’re hungry, you can’t do anything other than feed them. I mean, they have to be fed.

    Bill 33:57

    And if you don’t feed them, don’t be quiet. So that whole relying on them relying on us is cool because it makes us do things for someone else or something else that perhaps we wouldn’t have done in the past. And it’s like you said, it’s, it means that you’re getting exercise, it means that you’re bending, you’re opening a can, or you’re preparing some food or you’re cleaning their litter out. Do you see that as something that other people might benefit from in our situation?

    Ginger 34:31

    Absolutely. I mean, I think obviously, there are the physical limitations to consider like if you, you’ve got to make sure you can care properly care for you’re in the physical condition to care for an animal but if you are, I think it’s amazingly rewarding to like you said kind of have someone or something depend on you. And you know, you kind of gives you something to do and like look at you like a routine. To get into something that looks after and the reward you get back the love and the fun is just it’s so rewarding I guess it’s a whole package of the reward honestly, there’s no downside to it to me.

    Bill 35:15

    And with a cat, you wouldn’t call it unconditional love, would you?

    Ginger 35:20

    My cats? I don’t know if they are they are very constantly loving and always wanting to be affectionate. So no, no, no, no, all cats are like that. But for whatever reason these cats are

    Bill 35:34

    cats, not unconditional loving.

    Ginger 35:37

    I’ve heard I’ve heard it.

    Bill 35:39

    Yeah, when she wants to be loved. She’ll let you know by coming and sitting on you. And if you want that in return from her you go up and try and get a hug from her. She (inaudible) came

    Ginger 35:53

    It’s gotta be on their terms.

    Bill 35:55

    Yeah, she might let you get away for a few minutes but not too long. One of our previous guests Clare Coffield on episode 92. She told me she’s a lady who’s approaching her 70th birthday. And she told me she only got a cat after her stroke in the last few years, and she’d never had an animal before in her life to care for.

    Bill 36:16

    And she could not believe what she’s been missing out on. She just said, It is amazing. To think that she not once in her life considered that a pet might be something that would give her companionship make her feel better, love her that she could love and care for. She’s just and she’s a mom. She’s had that relationship with somebody before but she just couldn’t imagine herself doing that with an animal now that she has. She just can’t understand how she didn’t go down that path.

    Ginger 36:49

    Yeah, I didn’t have pets growing up. So I didn’t understand either. Like I when I got these cats I didn’t know it could be so Just like how much love and fun and enjoyment you could get from having an animal I just didn’t know I didn’t have that context. So, I mean, I’m just grateful. So I’m just very grateful that we had them. And they were here for both of us, my husband and I both like, you know, they’ve provided lots of like, support I don’t know this is the right word, but just, you know, just joy and fun and love through all this craziness.

    Bill 37:27

    Yeah, we have two children. They’re not they’re way beyond 18 years of age. Now, Christine and I, my wife and I, and now it’s all about it’s become about the cat. So before it was the kids did this or the kids didn’t know it was about the cat. And now I do stuff like say, if you do that if you misbehave, I’m going to tell you’re mom on you.

    Ginger 37:47

    We do that too.

    Bill 37:48

    Their mom will be there now. And Christine was going don’t worry about it. Ignore it. Very interesting interaction that we all have all the three of us and the kids that we all have together now. She’s a member of the family. She runs the show she owns one of the chairs that nobody else can go to. And yeah, it’s just something that I think some people who are stroke survivors might consider going down that path with some kind of a real gentle, easy-to-care-for animal and cats tend to be mostly easy to care for because they sleep a lot.

    Ginger 38:25

    Yeah, they’re pretty independent, and they can go, you know, you don’t have to take them outside all the time, or walk them and things like that. And so yeah, I recommend cats for lots of reasons, but it’s a good one, the low maintenance aspect of it, for sure.

    Bill 38:41

    Yeah, nothing like some good old animal therapy. So now that you’re three years out of post-stroke, and

    Ginger 38:52

    Well, more like a year and a half, three years started the eyes stuff and then my stroke happened about a year and a half ago.

    Bill 38:59

    Yeah, other than their physical challenges of weakness on the left side and the things that you described already. What are some of the things that you hope to overcome so that you can start changing your focus I got to that point where I thought, I’ve got to start overcoming certain things so I can change my focus and find a new way to include myself in the world. What are some of the things that you’re hoping to overcome?

    Focus on things to overcome


    Ginger 39:33
    I think that as time is going on, and I’m becoming more accustomed to the physical limitations that I had, and it’s also in there also like, getting better, like I’m working hard to work on my walking as I can walk without, like, without a cane. Now I was on it. I was in a wheelchair for a while then a walker and a cane and now I’m walking without anything and that’s, you know, really kind of focused a lot on my physical strength and getting kind of back into as much shape as I can.

    Ginger 40:08

    But then also, I think learning how to adapt to the outside world with whatever physical limitation I’m experiencing at the moment, the vision or balance or whatever, figuring out how to not get overwhelmed and stressed out when I go out in public and go into new situations. Because I want I mean, I very much am a person who likes to be out doing things and I don’t want these things to stop me.

    Ginger 40:39

    I want to figure out a way to be comfortable, kind of no matter what. So I know that sounds kind of vague, but I’m trying to kind of approach it from like a broad, bigger picture kind of outlook, so that I can be adaptable because you know, in my situation, you know, you have good days. bad days, bad weeks, good weeks, you know, I want to be able to enjoy life kind of no matter what.

    Bill 41:06

    So, I like that being broad is good early on in stroke recovery, because if you want to play basketball, from the moment that you got out of surgery, and you can’t do that yet, that’s gonna be frustrating. After all, that’s a really big skill to be able to achieve. For some people, it’s going to be hard and perhaps very frustrating. But if you want to just do something broad, like I want to be able to just stand that’s more doable than running at the beginning.

    Bill 41:36

    And I remember going through rehab and my therapist asking me, what did I want to do? And I said to him, Well, I want to be able to just go into a swimming pool, so that when I’m walking in the swimming pool and re-training myself to walk, I don’t have to be afraid of falling over that’s it. And they put me into a swimming pool and then that started this maybe from the walking in the swimming pool, I’ll work outside on my own, and so on.

    Bill 42:04

    And then that started to change as I went through therapy. And then about six months after I was home after surgery, my outpatient therapist said to me, what do you want to achieve? And I said, I’d like to run and he said, what does that mean? And I said, not a marathon or anything just across the road so that I can get out of the way of a car if it’s coming. And it was such a, it started to become more fine-tuned, why I needed to run and why I needed to walk and it had a purpose behind it, and I got there. And I don’t enjoy running, but now I can run on a treadmill if I want to.

    Ginger 42:41

    That’s amazing,

    Bill 42:42

    You know, for about five minutes or so. And that’s five minutes more than I care to really.

    Ginger 42:50

    I don’t enjoy running either. But yeah, I understand.

    Bill 42:54

    Yeah, you know what I mean so being broad. I think is great so that you can narrow it down later. It’s like having, it’s like trying to work out what career you want to do when you know you leave school. Well, I don’t know. I’ll just try something and I’ll see how it goes. And if it goes, Well, I’ll continue that down the path if I don’t like it, I’ll try something new.

    Ginger 43:16

    Yeah, I think flexibility has been like, one of the biggest, learning to be flexible. and adaptability has been one of the biggest challenges for me, you know? Because you don’t know like, I didn’t know early on, I still don’t know what my abilities are going to be a year from now, a month a week. And I first you know, I remember going into rehab and then asking them what my goal was, and my goal was to walk out of rehab on my own.

    Ginger 43:52

    Well, I learned very quickly that that wasn’t gonna happen. So my next goal was to transfer from the bed to the wheelchair safely. That was the goal and that’s what I accomplished before I left. And over time, I’ve kind of learned to set smaller kind of more general goals. Yeah. And in just recently, you know, after I’ve kind of been used to kind of walking around the house on my own without the cane.

    Ginger 44:21

    I wanted to work on my stamina because I can only kind of walk a little bit at a time before I get very tired and worn out. So I started on the treadmill, like, I could only do about 30 seconds. At first, it was very painful and hard. And now I’m at almost seven minutes of solid walking, which I thought I would never do.

    Ginger 44:42

    Like it’s it’s, it seems impossible. So that’s kind of showing me too, that I can accomplish things that I didn’t think I could do before. And now these kind of like more generic like exactly what you said like these sort of broader goals. I can make it more specific and kind of like, actually get more targeted with what I’m trying to do. And it feels really good to be able to do that.

    Bill 45:09

    Yeah. And it’s okay to have a big goal. Yeah, though, I’m going to walk out of the hospital again. Because if you don’t get there, what that means is now you’ve got some feedback, and you can look back and go, Okay, what am I lacking to be able to do that? Now I can focus on those things that I’m missing, which if I did, might help me perhaps, I don’t have enough time to walk out of the hospital, but I have enough time to walk out of, you know, whatever, whenever.

    Bill 45:45

    Let’s not get that big goal and be upset that we didn’t reach it. Let’s just use it as the Okay, the benchmark of oh, okay, so that big goal is made up of a whole bunch of little goals. And if I achieved one of those, and then the next one in the next one, then before you know it, if I look back and reflect maybe in 12 months, maybe I’m further along than I expected, and that’s okay.

    Bill 46:07

    That means you don’t feel overwhelmed. And that means you don’t feel like a failure or that means that you don’t get concerned too much about not having achieved that yet. And I didn’t have any goals or ideas or thoughts about what I was going to do. I just knew that I was going to walk when I was asked when I kind of contemplated the possibilities of what might happen to me after surgery, I expected the worst in that I expected that I wasn’t going to be able to do anything with my left side after surgery.

    Bill 46:45

    And that kind of almost was the situation and then I just made the goal of now I’m going to walk so I didn’t think about anything else a timeline or when or how or what because I started to get these lessons about time, at the beginning three years almost before that, because every time I thought I was going to get my memory back or every time I thought I was going to be able to do a calculation or drive or write, all those timelines got stretched out by things that were out of my control so that by the time I got to surgery, I was like, okay, I don’t know how long this is gonna take. But I’m just going to go on the path to achieving that outcome. And whenever I get there, I get there.

    A stroke recovery mindset

    Ginger 47:26

    I had to kind of learn to approach it that way, too. You know what I think and also that there was kind of like a not fully understanding my situation, not fully understanding kind of what it happened to me. It all happened very quickly. I don’t think that’s the case for a lot of people. Sometimes these things just happen in the blink of an eye, and then it takes a while to kind of catch up to, oh, this really happened and this did this thing to me and it’s going to take this amount of work or, you know, a general sort of like idea of this kind of work that I had to do to like, kind of get past it.

    Ginger 48:05

    And it’s a lot for people to like, understand, and wrap their minds around, you know, you’re processing the trauma that would happen to you and figuring out what your body is doing. And so it’s a real process-heavy one. I mean, the rewarding one, you know? Maybe doesn’t always feel that way but it’s a process.

    Bill 48:27

    And it’s shitty as well, the whole shitty like, you’re going through this shitty time. And before that, you don’t have any skills. You don’t have any way of knowing how to navigate a stroke. I mean, it’s right. You don’t learn these things until you’re in it. It’s like having kids. You just have no idea what the hell you’re doing until you have one.

    Bill 48:50

    And then you’re trying to sort of work it out and if you don’t upgrade the kind of level that you’re at, and I’m not talking about learning more things or reading more books I’m talking about upgrading yourself and your identity that I, I am a learner or I’m now somebody that doesn’t give up or I’m now somebody who is always going to strive for improvement, whether it takes one day, one hour, one week, one year doesn’t matter, I’m going to always you’ve got to upgrade yourself to get through that process and mindset plays a massive role. What was your mindset like before stroke and is it similar and or different now?

    Ginger 49:31

    It’s very different, you know, I can’t even you know, I it’s hard for me to even kind of identify what my mindset, you know, would be I mean, you know, I’ve kind of always been a positive person, but, you know, sort of like a day by day kind of take it, take it day by day sort of thing. And I guess in some ways, I am still like that, you know, I had to be that now because every day is different.

    Bill 50:02

    So what I’m saying what I’m asking is how much mindset plays in your recovery because you’re gonna have the bad days. Let’s face it, we’re both sitting here being quite energetic and talkative, and the rest of it, but we’re gonna have our crappy days. So how much does mindset play a role in getting you through those darker days? Or those more difficult days? Or those days where you’re doing shit self-talk?

    Ginger 50:31

    Oh, gosh, it’s huge. And I you know, I struggle with that too. At first, you know, I just didn’t know how to, like, you know, to have the bad day isn’t a bad week, you know, and feel like it’s just this is just permanent this way. It’s going to always be I don’t know how to get out of this and over time, you know, and honestly, therapy has been a huge like mental health therapy has been a huge help for me.

    Ginger 50:55

    Learning how to kind of break out those patterns and sort of like being able to pull back and say just be kind to myself, like kindness and compassion towards yourself is key, being gentle being loving because you just never know what you’re gonna get. And on the dark days, just kind of like the understanding that it will pass and you know, everything is temporary in your energy kind of moves in a flow.

    Ginger 51:22

    And the dark days will be over and then you’ll have, you have days again, and it’s just always a wave. So, I think I kind of said earlier that the flexibility and the ability to adapt are huge. And then also just having as much kindness and compassion towards yourself, even on the dark days when you’re telling yourself all these negative things. Learning how to maybe step out of that and kind of like figure out how to talk to yourself nicely, even through the darkness.

    Bill 51:56

    Yeah, I remember having some days where I would be Feeling a certain way, you know, really negative kind of experience and my wife would be trying to work out what’s going on. And I think I finally got to that point where I said, I’m having a shit day, and I want to have a shit day and I want to be shitty. And I don’t want to be happy and I don’t want to be.

    Bill 52:15

    I just want to be the way I’m being. And I’m sorry if it’s affecting you negatively or bothering you. I’ll be okay in a day or tomorrow in an hour. Or right now, I just need to be like, this can’t change. I don’t know what to do to change it. So I just want to be it. And then just being able to.

    Ginger 52:32

    Yeah, I was gonna say, being able to, like express that and identify this what’s going on? is huge.

    Bill 52:38

    Yeah. And that’s the most I could do. I couldn’t say any more than that. I just feel shit. I want to feel shit I want to stay here. I don’t want to change and I want to bitch and moan and complain. And, hopefully, I’ll stop at some point. But it’s not about you. I don’t want you to get upset annoyed and offended at me or any of that stuff.

    Bill 52:58

    I just want you to know it’s something that I’m going through that it took a long time for me to get to that. And then you know what’s cool about that is that gives her permission to say that back to me, because she had the same terrible days that I had, because of me. And because of what I was going through, she was going through the same thing. feeling stuck, isolated, you know, her identity is coming into question, am I going to become a carrier for this guy now for the rest of his life?

    Bill 53:22

    You know, I don’t know what she was thinking. So that gave her permission to be like that. I recently also did an episode, Episode 82, which was about how to have a growth mindset. And that is an important thing. You know, there’s, if you can have a growth mindset, and you can have just small amounts of growth, and that for me was growth, being able to just sit in my state and accept that I was this way.

    Bill 53:52

    Allowing me to have this growth mindset allowed me to start talking about things that I’d never spoken about before because it wasn’t okay to be shitty in our house before that, you know that’s not what you do. You don’t act that way you don’t be that way. Snap out of it was the kind of usual approach. And the usual approach doesn’t work in these situations.

    Ginger 54:17

    Yeah, I mean, that’s me that sounds very, very familiar. But you know, it takes a long time to kind of be able to recognize those patterns and you know, the feeling shitty and feeling like you’re being shitty. Just feel shitty and you can’t see much more beyond that. So when you get to the point when you can kind of see, okay, I’m going to feel this way for a bit deal with myself, just ride it out. And then it’ll, it’ll pass. And, you know, it takes a long time to get there to get that kind of understanding. But, you know, then once you kind of accept that it’s going to happen from time to time, you can manage it better.

    Identifying the signals

    Bill 54:55

    You can just stay there and know that it’s going to end that feeling that way, it’s kind of for me it was embodied It started in my body and then it ended up in my state of mind. You know, it kind of was a loop. And if my body felt unwell then my mind followed. And then as my body started to rest and relax, I started to get better then my mind came back.

    Bill 55:21

    I was just allowed allowed myself to go through that cycle. And, and then learned that when I felt this way. It was the sign it was okay, sit down, rest, recover, do nothing, go nowhere. And just heal and just relax and just get better. And that’s what I have. Now. We all have this massive signal of now’s the time to rest.

    Ginger 55:51

    Yeah, and again, I can relate. I can relate to that. It’s like you know, being able to kind of be more in tune with your body and You know, what, how it’s gonna affect everything else around you. It’s a gift to be able to sort of like being able to pay attention to that and react or not react accordingly.

    Bill 56:13

    Yeah. And if people listening out there, you don’t get there, you’ll get it. It’s just a matter of time. You’re a year and a half, almost or kind of out of your surgery, and nearly three years into the whole journey. Somebody who listens to this might be earlier on in their journey and their experience. What would you say to them? Now reflect on what would you say actually to yourself, reflecting on what you already know.

    Ginger 56:45

    Oh, gosh, um, just to be patient, and again, just try to be as patient and kind and loving through the process because it’s brand new and there are going to be some dark days you may not understand what’s going on, you know, at any given point, but you know this even though it might feel like this kind of bad stuff negative feeling emotions mood is gonna last forever. It’s not going to, you know, time moves on and also just learning to accept whatever kind of state you’re in at the moment, accept it and just try to be patient and kind to yourself.

    Ginger 57:42

    I think that was the biggest thing that I had to learn early on for me, because it was just I didn’t know how to do that very well. was very hard for me. Oh, I can’t do this thing. I can’t do that thing. I can’t do this anymore. Why can’t I do it? You know, I should be walking by now. I should be doing it by now you get buried and shoulds. Yeah, so just just to kind of step back and just try to accept the process and love yourself through it.

    Bill 58:12

    Yeah. You strike me as somebody who will find a new way to do your life to be yourself and to express yourself and being somebody who is a graphic artist. You’ll get a lot actually from checking out The Great Now What? Maggie is visually creative as well and she created to try and explain to people what it was that she was feeling she created some figurines from, I think they were Barbie dolls. On one of them, she added clay on the left side, to show the difference in how she felt in her body and to express that somebody who couldn’t see what, she was experiencing.

    Bill 59:04

    And then on another one, because she has hypersensitivity issues on her skin, she wrapped one in barbed wire. And then she has a couple of different versions of that. And she’s somebody who, those figurines they painted such a powerful picture instantly when you look at them, you can just go yep, exactly that’s me that’s how I feel.

    Bill 59:34

    So when we’re done with the podcast, I’ll send you will link to that episode. And then you can just look out for The Great Now What and Maggie is somebody who is going to and I think she already has participated in a play that’s done by an organization that supports actors that come from all walks of life that are dealing with some kind of a disability and it’s a really powerful organization because it enables so many people to express themselves into, you know, go back into the arts.

    Bill 1:00:14

    So it’s amazing. Yeah, you’ll love it. I have a feeling that you’ll get there as well. I also looked at your Insta and I see there’s a different colored eyepatch and a different texture eyepatch. Is that every day?

    Ginger 1:00:29

    Oh, I wish I wish I had that many. But you know, it just kind of depends on my mood or my outfit, or my hair. Yeah, I’ve got a purple one and a blue one, the red one is black glitter. All kinds of different ones. I love it.

    Bill 1:00:45

    I love it. Good on you. Well, thank you so much for being on the podcast. And more importantly, thank you for being brave and finding the courage to put yourself out there. Because from that, I think you’ll grow and you’ll become the kind of person who’s once again despite what’s happened to you able to be comfortable in your skin feeling positive about life and you know making a difference to people and this is so selfless doing what you did is so selfless and I appreciate that because that makes a massive difference to all the other people listening

    Ginger 1:01:25

    Thank you yeah and kind of want to add to that a little bit I know that you know facial weakness for others uses for example, facial weakness and eye damage are probably pretty typical with strokes, many strokes. And I don’t see a lot of other people with facial weakness or facial paralysis out there. So I kind of wanted to I was very nervous to do this. You know, on the video part anyway, not very nervous, a little bit nervous. However, I want to kind of show that it’s okay to have a facial weakness and to wear iPads. It’s cool. It’s great, you know. And so I appreciate that you allow me to share my story with you and with your listeners and followers and I just really appreciate that.

    Bill 1:02:18

    My pleasure. Thank you so much for being on the podcast.

    Ginger 1:02:19

    Thank you so much for having me.

    Intro 1:02:22

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post Cavernoma – Ginger Burden appeared first on Recovery After Stroke.

    1 hr 3 min
  • AVM Recovery – Jessica Lepper

    20-year-old Jessica Lepper suffered from a ruptured AVM on her shift in a hospital as a nurse about a year ago. She is now also dealing with epilepsy caused by her stroke.

    Instagram: www.instagram.com/jessicasavmjourney/

    00:29 Introduction

    03:17 Jessica had a ruptured AVM
    09:10 Physical challenges after the surgery
    11:47 Having epilepsy while in AVM recovery
    15:18 Having Gamma Knife to remove the AVM
    20:08 Sharing scars

    Highlights:

    Jessica 0:00

    But I noticed I couldn’t read or anything like that. My right side was quite weak. So I couldn’t hold a glass or anything like that. I couldn’t move it, but yeah, and I couldn’t walk at all.

    Intro 0:22

    This is recovery after stroke with Bill Gasiamis helping you go from where you are to where you’d rather be.

    Introduction


    Bill 0:29
    Bill Gasiamis here this is Episode 96 and my guest today is Jessica Lepper. Jessica was a 20-year-old nurse on shift in a hospital when she noticed herself not being able to speak due to a ruptured AVM. Since then Jessica has had to overcome a lot to get back to work and is now being monitored due to seizures.

    Bill 0:53

    Now just before we get started with the interview, I wanted to thank everyone who reached out to me to send me lovely feedback. And to share how much each episode has helped them or made a difference in their life. It’s so heartwarming to hear from you. And if you felt like reaching out before, but you haven’t yet, I’d love to hear from you.

    Bill 1:14

    This podcast is for you and me and I do this work because I love what I get from it, I get so much satisfaction and it makes my life better. And that’s why the podcast exists. And I hope that that’s what it does for you. If you feel like shit from time to time, I hope that it makes you feel better. If you are feeling alone, I hope that it makes you feel somehow more connected.

    Bill 1:38

    If you feel isolated, you’re not alone. Just reach out. You can send me an email at [email protected] I answer all my emails personally. Also, if you love the recovery after stroke podcast and you think it’s helpful, please share it and tell others about the podcasts so that they might benefit too.

    Bill 1:58

    If you’re watching on YouTube, please give us a thumbs up and leave a comment. I love to hear from other stroke survivors. And again, I answer all my comments personally, go to iTunes or your favorite podcast app and also give us a five-star review there. That’ll help search engines find a better one and put it out to more people.

    Bill 2:18

    Also, if you want to follow me on Instagram, just go to Instagram.com/recoveryafterstroke or Facebook.com/recoveryafterstroke. Finally, I wanted to let you know that you can now also download all the words of each episode as a PDF. It’s perfect for you if you prefer to read and take notes or highlight different parts of the interview for future reference.

    Bill 2:43

    It’s a great way to learn and it helps retain new information to memory. Just go to recoveryafterstroke.com. Click the image of the episode you’ve just listened to. At the very beginning of the page, you’ll see a button that says Download transcript. Click the button enter your email address and the PDF will begin downloading. Now it’s on with the show, Jess Lepper welcome to the podcast.

    Jessica 3:07

    Hi.

    Bill 3:08

    Hi Jess, thanks so much for being on the podcast. I appreciate it. Can we just start with you telling us a little bit about what happened to you?

    Jessica had a ruptured AVM


    Jessica 3:17
    Yeah, sure. Um, so long story short, I was a nurse at a hospital in London. And I was just talking to a patient and my words started to slur and then I completely lost my voice. And I thought that a bit weird, and then I got sent to Charing Cross, which is a neurological center in London. They confirmed that I had an AVM rupture, which caused me to have a stroke.

    Bill 3:50

    Wow, how old were you at the time?

    Jessica 3:53

    22. So quite young. I think that’s why we didn’t know what was going on.

    Bill 3:59

    Were you with professional people around there? Were there other nurses and doctors around at the time that I happened?

    Jessica 4:09

    Yeah, I was so lucky. Yeah.

    Bill 4:13

    Do you have any recollection of after you couldn’t speak? What was the what am I trying to say? Like I’m trying to say did you notice yourself not being able to speak?

    Jessica 4:28

    Yeah, I think I was thinking what I was trying to say but I there was no word coming out. Really? Yeah.

    Bill 4:40

    So you were at the hospital for work. You had an AVM rupture and you found yourself being in the best place at the right time. Was it a CT scan immediately what happened after that?

    Jessica 4:56

    Yeah, so I went downstairs for AA and they rushed me and I was like, This is so like weird and they rushed me in an ambulance to the neurological center. And I had a CT scan straightaway and yeah confirms a stroke or brain hemorrhage.

    Bill 5:18

    Wow, what happened after that? What was the process that they took you through?

    Jessica 5:23

    And they started me on Keppra which is a seizure meds, just in case I had a seizure. And I was bedbound They said like, I can’t move or anything. And then I was sent up to the neurological wards. And then yeah, that’s where the story starts really.

    Bill 5:47

    Did you have surgery after that?

    Jessica 5:48

    Yeah, I did. Um, I had a craniotomy to remove the AVM. And it didn’t go to plan to be honest. The operation was meant to take about five hours. But I had a hemorrhage on the table again. So it took about nine hours. And I ended up in ITU. And the surgeon straight to my parents and said like, he wasn’t sure how my condition would be. He said, like, I probably won’t walk talk like, I’m probably not going to be as normal as I was before which.

    Bill 6:38

    Wow. So when you work up, How long after your surgery? Do you have any recollection of how long it was? After you kind of woke up and started to realize that you were in a hospital bed?

    Jessica 6:51

    I woke up and I just saw my parents waving through the door and then That’s it. That’s all I can remember. The ICU experience. I can’t remember to be honest.

    Bill 7:07

    Yeah. Wow, that is fascinating before the stroke happened or before the hemorrhage occurred. Were there any signs leading up to that day to go to work? Did you have any idea that perhaps there was something serious going on in your body?

    Jessica 7:26

    No, so I was in Australia 73 hours before that, and living my life like living the dream. And then I went home to Devon, no sign of anything, and then ready to work fine. And then suddenly that was it, it’s so weird.

    Bill 7:44

    So unexpected and so young, and everybody’s going, everyone’s probably freaking out. How did your family cope with all this sudden drama and emergency?

    Jessica 7:57

    Well, they live in Devon which is about four or five hours away from London and they got the call and I think they didn’t know the situation until they got there and they were all like really positive and you know kept me positive and didn’t stress me out but I think behind the scenes everyone was pretty stressed out.

    Bill 8:28

    You woke up from surgery what did you notice about what was different about your body? Did you have any idea of what was different from what was happening to you?

    Jessica 8:40

    I’m not, to be honest, My speech wasn’t changed. So it was quite minimal, but I would still like to do some hand actions. But I noticed I couldn’t read or anything like that.

    Bill 9:03

    Did you have any problems walking any numbness in any one of your limbs or anything like that?

    Physical challenges after the surgery


    Jessica 9:10
    My right side was um, yeah, quite weak. So I couldn’t hold a glass or anything like that. I could move it. But yeah, and I couldn’t walk at all.

    Bill 9:26

    Did you have to have rehabilitation as a result of that?

    Jessica 9:30

    Yeah, physio which was quite hard because I probably was bed-bound for like two weeks, because I had to, obviously do my ITU experience, which is like a week and then it was moved to HDU. And then I was bed-bound and then the physio started getting me up, but it was a nightmare.

    Bill 9:55

    What’s, it u and H GG?

    Jessica 9:58

    Oh, sorry, intensive care sorry.

    Bill 10:02

    And HDU is?

    Jessica 10:04

    High dependency. It’s just a step down from ITU.

    Bill 10:12

    Right. Okay. So then, did you have some time and rehabilitation was it two weeks in rehabilitation?

    Jessica 10:20

    And so I probably spent four weeks on high dependency. And then I had speech and language every day. The occupational therapists showed me quite a lot because my short-term memory was like, literally gone. I couldn’t remember anything.

    Bill 10:42

    Wow, how long ago was this now? So we’re in? It’s April 2020. And when did this all happen?

    Jessica 10:52

    January 31, 2019. Yeah, so last year.

    Bill 10:57

    It’s been a year.

    Jessica 10:59

    Yeah, I’m so lucky, to be honest. But yeah.

    Bill 11:02

    Yeah, we are. What were the main things that you had to relearn how to do again?

    Jessica 11:10

    I guess my speech was one of the main things, and I probably still struggle with that at times, especially when I’m tired. So when I went home from the hospital, I had like intensive speech and language for quite a long time. And yeah, which was tricky at times, but we got through it.

    Bill 11:34

    Yeah, what did it mean for your driving and just being a normal person you know daily, what did that mean for what you could no longer do?

    Having epilepsy while in AVM recovery

    Jessica 11:47

    And so I couldn’t drive. And I now have epilepsy as a consequence. So I can’t drive at all now until I didn’t have a seizure for a year.

    Bill 12:01

    And is the epilepsy. Something that you notice coming on? Is it something serious that occurs? Or is it something that you can manage and control when you become aware of it?

    Jessica 12:12

    And to be honest, I get no signs at all. And so I just like fall on the floor (inaudible) remember really.

    Bill 12:23

    Wow and you fall on the floor have you hurt yourself doing that at all?

    Jessica 12:27

    The first time? Yeah, I did. But I can usually manage to get on the floor. I have like five seconds and then it all starts.

    Bill 12:38

    And then you need people around you to help you recover from that. How does that work?

    Jessica 12:46

    So usually, it’s like an ambulance has to come because they last like 40 minutes. It’s not like a quick like two minutes or anything is quite intense.

    Bill 12:57

    Right. Does it require hospitalization as well?

    Jessica 13:01

    Yeah.

    Bill 13:04

    Wow, so you’ve been through quite a tough time. And it seems like you’re still going through a tough time. Is it getting better? What are you noticing? what’s getting better for you?

    Jessica 13:15

    Yeah, definitely. My speech is like, if you didn’t know me, you probably think like, I’m just a normal person. And this is my speech. And I have to think about what I’ve been saying. And sometimes the words don’t come out. My walking’s fine. I’m so lucky with that. And, it’s just the epilepsy and speech really, that have been affected. But yeah.

    Bill 13:47

    Have you been able to get back to work as a result of the time that’s passed since you’ve had a stroke or are you not back at work yet?

    Jessica 13:57

    I went back to work on February 3rd so basically a year after my stroke, as a nurse, but, with this situation going on, I’m back in Devon, for now, and then we’ll see what happens.

    Bill 14:14

    How do you find being back at work? Now that you’re a stroke survivor? You’re somebody who’s got a real experience of something really dramatic, even at the age of 22. How did you find going back to work?

    Jessica 14:31

    I was relieved to be back because, to be honest, we didn’t think I’d ever work again. And I was when I was with the same teams, everyone knew me and I had a lot of visitors during my time, like in the flat and Wimbledon, so everyone knew the situation. We’re helpful. It’s a bit weird going back to the place it happened. I’m, sorry that took me a while but other than that, I also forgot that the AVM wasn’t completely removed. So I had to have a Gamma Knife. I don’t know if you know what that is.

    Gamma Knife to remove the AVM

    Bill 15:18

    Tell me a little bit about that is that radiation?

    Jessica 15:23

    Yeah it’s radiation just to zap away the AVM hopefully, but it works slowly so it probably takes about five years and then we’ll have to see whether it’s working

    Bill 15:40

    And you have to have ongoing Gamma Knife procedures?

    Jessica 15:47

    So after five years, they’ll do an angiogram and then we’ll see how it is and if it’s still there, then we’ll have to do another cycle. But hopefully, it won’t be there.

    Bill 16:03

    Fingers crossed. So what happened with the surgery though? So you still had a craniotomy? I saw the scar on Instagram that’s quite an awesome scar.

    Jessica 16:11

    Yeah, crazy.

    Bill 16:12

    What was the outcome of the surgery? What did that achieve?

    Jessica 16:19

    So that was hopefully to remove the AVM, but it was too deep. So they’ve removed quite a lot of it. But some of it remains.

    Bill 16:33

    Right. Okay. So they’ve gone in and they’ve decided to not go any further and then leave it be, get you out of the hospital get you recovering, and then treat it with a gamma knife. So that it’s less in weight is that right?

    Jessica 16:50

    Yeah, you’re right. You’re right.

    Bill 16:52

    Now, tell me this whole experience has made you a better nurse.

    Jessica 16:58

    Yeah, I think Yeah. It makes you think you empathize more. And you think about things like, you know, the parents and how they’re feeling because sometimes you just, you know, so busy, you just get on with it and you’re just focusing on the child, but actually, you need to focus on the parent as well. Because if they’re not positive and, you know, resilient, then the child is not going to get better. As soon as like as quickly.

    Bill 17:31

    You’re a nurse and you have all this inside information about medical stuff. Does that make you feel better about what you’ve learned about your experience? Or because you know what, you know, does it give you some kind of a sense of underlying concern?

    Jessica 17:49

    No, I think during the whole experience, obviously I knew, like my observations and whether they were normal or not, but that was made me, It made me understand the situation more, I think. Because obviously, I knew what was going on really, because some people obviously wouldn’t know.

    Bill 18:15

    They wouldn’t have a clue. I’m the kind of guy that needs a whole bunch of information. I need to know everything I need to ask all the questions, whether it’s good or bad. Do you find that being a nurse gave you that opportunity to be in control of a little bit of the information? And is that a good thing for you?

    Jessica 18:34

    I think because at the time I can speak it’s quite frustrating. After all, I wanted to know, like you said, everything that was going on, but I couldn’t express myself. So we had like a word board to try and I could throw the things I wanted to say but obviously, if it’s quite complex then obviously, I could have.

    Bill 19:00

    Yeah, then it becomes harder to communicate what you want and it takes a lot longer. So what were some of the things that you wanted to communicate that you couldn’t get the message across?

    Jessica 19:13

    I guess as a nurse, I wanted to know, the jobs and you know the dosages and stuff like that. I couldn’t ask that.

    Bill 19:23

    Yeah, why did you feel you needed to know the type of medication you’re on and the doses?

    Jessica 19:31

    I think because like the Keppra and stuff that is like an anti-seizure one. And obviously, I know like you steroids and stuff like that, obviously that I was on by just wanting to know the dose because obviously, I know how like, serious it is or not, not as serious.

    Bill 19:51

    Yeah, I see what you’re saying. Now as a girl with beautiful blonde hair and long hair, how did you deal with the whole they’re going to cut my hair situation, or were you aware of that? Or did you kind of work that out later? And then

    Sharing scars after stroke


    Jessica 20:08
    Yeah, I think, yeah, it’s one of those things you just have to get over, don’t you? I think, you know, we had to do the surgery. Otherwise, I’d probably have another stroke. So we just thought we’ve got to get on with it. And I can cover up so yeah, it’s gone now. So that’s good.

    Bill 20:25

    So what did they do just take out the bit that they were going to do the incision on?

    Jessica 20:30

    Yes, the surgeon was really good. He just literally did it from here, back to my ear and that’s it. He didn’t like to shave, anything that didn’t need to be shaved. So got quite lucky.

    Bill 20:44

    I got to prepare myself for the surgery. I was told that we were going to have surgery on this particular day. So I went and got the hairdresser to give me a number zero like basically what I’ve got now but completely bald. The funniest thing happened because it was a, I think it wasn’t Zero number one. It was short everywhere.

    Bill 21:11

    And then it was shaved in the area where they opened my head up. And then as it started to grow back, I had this really weird look. It was kind of long, and then it had like a line. And it looked bizarre. So four days after my surgery, I had to shave it again. So I don’t look too silly.

    Jessica 21:34

    How is yours healed?

    Bill 21:36

    Yeah, it’s healed. Amazing. It’s been four years or so. And you can’t see it at all.

    Jessica 21:47

    No, not at all.

    Bill 21:49

    If I cut my hair short, where from time to time I do. You can see it. It does come through but not a lot. The hair has mainly grown back.

    Jessica 21:59

    Oh, that’s good.

    Bill 22:02

    So with you is it visible that all or only when you move your hair?

    Jessica 22:08

    Just when I move my hair back which if you didn’t know you just think it’s a little bit bald you know which you know people have so yeah, I’m quite lucky.

    Bill 22:19

    For different reasons. Yeah.

    Jessica 22:21

    Yeah, exactly.

    Bill 22:23

    So tell me about the next few years What are they like for you What have you got planned to do and achieve?

    Jessica 22:32

    I think just to get my new normal routine back obviously, I was living in Devon until like six months last year. I’m just getting used to being in the flat on my own because I don’t like to be on my own now. We’ve got an alarm fitted so I can press it if I need any assistance. And then just seeing how it goes really and to be honest.

    Bill 23:02

    Has it impacted your relationships with your friends? Or did you have a boyfriend or a partner or anything like that?

    Jessica 23:11

    With my friends, they’re amazing. I think it brought us all closer, to be honest. Because at times at least you realize who’s there, don’t you? And I’m sure you realize that too.

    Bill 23:23

    Yeah. I think one of the biggest things that happened to me was I realized who were the ones that would say something like, if there’s anything you need, let me know. And when I asked for their help, they stepped up and made a difference. They surprised me. But when I asked them, they said yes. Did you find that as well?

    Jessica 23:50

    Yeah, definitely. And just from their being in the house and the flat and stuff like that. It made my communication better because I was always talking in communicating with someone other than my family. So that was good actually.

    Bill 24:08

    Yeah, were you with a partner at the time?

    Intro 24:10

    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 recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 24:36

    If this is you, you may miss out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke.

    Intro 24:55

    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.

    Jessica 25:24

    No. A bit since then, yeah.

    Bill 25:27

    Since then, so you’re living with somebody now? And how soon did you make him aware of what your challenges were?

    Jessica 25:35

    Well, he was just on the scene before, and then after the stroke, he didn’t see us for quite a while because everything was happening. And then, he was told quite a lot of things. But yeah, he doesn’t know when I have my Instagram account. Sometimes he’s like oh, that happened. And yeah, he didn’t know something.

    Bill 26:04

    So he’s just catching up on all of the juicy details now rather than earlier on.

    Jessica 26:10

    Yeah, you’re right.

    Bill 26:13

    Does he find it weird when you start a sentence and can’t get to the end of it when you forget what you’re going to say?

    Jessica 26:19

    No, he’s quite understanding to be honest. Yeah, definitely. Because I guess he knew he saw me at probably the worst of my speaking. So obviously is a lot better. Yeah.

    Bill 26:31

    Yeah, that’s awesome. How are you affected? Now? A lot of people that experienced a stroke experienced some kind of other challenges, you know, anxiety or things like that. Did you find any challenges with your mental health or anything like that?

    Jessica 26:49

    To be honest, I think I’m quite lucky. I think the only time that it is not able to go to things like nights out and stuff like that. I probably can’t do that anymore. But my friends are understanding and stuff like that. So I’m quite lucky and my family is supportive and, you know, they taught me to like me, like really positive and stuff like that. So, to be honest, that hasn’t affected me. At the moment. You never know what’s gonna happen to you. But yeah, at the moment, I’m all good. Thank you.

    Bill 27:23

    Awesome. And what’s interesting is that you’re not able to go out because of the stroke. And now none of us can go out because of this other thing that’s happening around the planet.

    Jessica 27:33

    I know it’s crazy, isn’t it?

    Bill 27:34

    It’s no real different, is it? However, tell me about your reason why you couldn’t go out at night. What was stopping you from being able to be out at a club for example?

    Jessica 27:51

    And because obviously with this epilepsy now I can’t drink and sometimes it’s my tiredness that affects me that’s when I have a fit. So I don’t want to risk it.

    Bill 28:07

    Yeah, so it’s better to be cautious. And do you find that lights or noise like that sound music that affects you?

    Jessica 28:18

    No not at all I’m quite lucky at the beginning like light is I hate I hated them sometimes. If I have liked the spotlight. I don’t like that. But other than that, yeah, I’m quite fine. Really? Yeah.

    Bill 28:35

    That’s amazing. I saw the scan on Instagram of the bleeding in your brain. That was quite (inaudible) taken up, right?

    Jessica 28:45

    Yeah.

    Bill 28:48

    Did that happen rapidly? Did it become that big that bleeds very rapidly?

    Jessica 28:55

    Huh? Yeah. So crazy. Like when you show a doctor Now they’re like God how do you survive that? Like, it’s crazy, isn’t it?

    Bill 29:04

    Yeah, it’s amazing. It just goes to show that every stroke is different, and every person is different. But there’s real hope in having a conversation with you and getting to know you a little bit. There’s such an amount of hope for people that are freshly going through this or have just, you know, who knows somebody who’s just gone through this.

    Bill 29:25

    Such a great amount of hope that people can work on recovering and getting better and getting back to some kind of a normal life. And now this experience, I wouldn’t wish it upon anybody. But isn’t that amazing that this experience that has happened to a nurse who’s 20-something years old can now support her in doing a better job? While she’s caring for other people?

    Jessica 29:52

    Yeah, it’s crazy, isn’t it? Yeah. And that’s why I want to create that Instagram account. Because you know, we need to be positive and you know, share our experiences. So, people, you’ve got to get through having you’ve got hope, and yeah.

    Bill 30:11

    So what do your family and parents think? are they keeping an eye on you? Are they fussing over you and how are they behaving now that it’s been a year that things are sort of starting to settle a little,

    Jessica 30:23

    and I think behind the scenes they’re probably a bit stressed, but they don’t show it at all. I think my mom probably worries about it more than my dad. Just cuz he’s like a chill person. We’re quite lucky.

    Bill 30:39

    Yeah, look, Jess, it’s been awesome to get to know you a little bit. I appreciate you being on the podcast and sharing your story. I wish you all the best with the recovery ongoing, and I think it’s gonna make you an amazing nurse next level. Amazing. And at such a young Age. I think it’s going to give you a lot of life experience early on and you’re going to be able to use that in a real positive way. Although I understand that it’s challenging and I would have much preferred not to be having a conversation with you about a stroke that you had.

    Jessica 31:15

    Yeah, thank you that’s kind.

    Intro 31:19

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post AVM Recovery – Jessica Lepper appeared first on Recovery After Stroke.

    32 min
  • Time To Talk About Stroke – Derek Van Oss

    Derek Van Oss suffered from AVM (Arteriovenous malformation) back in 2002. Since then he has struggled with so many challenges but now 18 years down the track, Derek was able to get back on his feet and turn his life around.

    Instagram

    Website

    Highlights:

    00:56 Introduction

    03:57 Derek had an Arteriovenous Malformation
    08:19 There’s nothing wrong with your eyes
    15:10 Cerebral Arteriogram
    23:39 Homonymous hemianopsia
    29:09 The 2nd incident led to surgery
    37:15 After the surgery
    45:13 Life will never be the same
    51:17 Derek wanted to end his life
    01:08:50 It took a long time to be ready
    01:17:30 Derek suffered from an injury
    01:22:22 Putting yourself out there
    01:27:47 Reaching out to other stroke survivors

    Transcript:

    Bill 0:00

    Nothing is stopping me from making sure that I keep releasing podcast episodes so that other stroke survivors don’t go through such a hard time as I went through. I don’t want them to do that. I want them to find us a lot earlier in their journey, and be healed a lot earlier in their journey so that they can pass it forward to other people and heal them as well.

    Bill 0:24

    What I’ve done as a result of that is because I’ve met so many stroke survivors, I coach a few stroke survivors. And then that’s amazing because coaching people is not telling them how to fix things or what to do things. It’s just to be there for them to have somebody back all the time. And just to help guide them to the next milestone.

    Intro 0:49

    This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be

    Introduction


    Bill 0:56
    Bill from recoveryafterstroke.com. This is Episode 94 My guest today is Derek Van Oss. Derek had a hemorrhagic stroke 18 years ago, and this is the first time he has put himself out there to talk about his stroke to such a large audience. Over the years, Derek has overcome so much and reflects fondly on the lessons and growth he has had.

    Bill 1:19

    Now just before we get started, I wanted to let you know that you can now download all the words of this episode as a PDF. It’s perfect if you prefer to read and take notes or highlight different parts of the interview for future reference. It’s a great way to learn and it helps retain new information in memory, just go to recoveryafterstrokecom and click on the image of the episode you’ve just listened to.

    Bill 1:43

    At the very beginning of the page, you will see a button that says Download transcript. Click the button. Enter the email address and the PDF will begin downloading. Also, if you love the recovery after stroke podcast and you think it is helpful, please share it and tell others about the podcasts that they may benefit too.

    Bill 2:03

    If you’re watching on YouTube, please give us a thumbs up and leave a comment. I love to hear from other stroke survivors and answer all questions personally. Go to iTunes or your favorite podcast app and leave a five-star review. Finally, if you think you would make a great guest and have an inspiring recovery story to tell with our community, please get in touch.

    Bill 2:26

    Just email me [email protected] and I will make it happen. Also, come along and follow me on Instagram by going to instagram.com/recoveryafterstroke and visit the Facebook page at Facebook.com/recoveryafterstroke. Now it’s on with the show.

    Bill 2:49

    Derek van OS Welcome to the podcast.

    Derek 2:52

    Thank you. Good to be here. It’s been a long time coming when we first talked about this probably over a year ago.

    Bill 2:59

    Yeah, it has been a while I imagine that you’ve been through some of your things. So I completely understand I have a total understanding of what it is that you might have been through. Tell me a little bit about what happened to you, Derek.

    Derek 3:14

    Oh, man, it’s a it’s a long story. But yeah, I’m a stroke survivor. Let’s see, I had my stroke in 2002. So I’m pretty far out from the point of impact, I guess, which seems to me in the kind of the community the online community of stroke support and stuff like that kind of where I found you on Instagram and things of that nature that the majority of survivors and seeing kind of getting involved are fairly closer to their point of impact, more in recent years than the last five years or so.

    Derek Van Oss had an Arteriovenous Malformation

    Derek 3:56

    So it makes me feel a little awkward being so far out. Because I just passed my, I guess it was my 18th anniversary of when I had my stroke on March 7, 2002. I think today’s the 26th of 2020 Um, so yeah, I had an AVM so I was 19 years old at the time. I’m now 38 I just turned 38 so this happened five days before my 20th birthday.

    Derek 4:37

    Just kind of bizarre to spend your 20th birthday in the hospital but necessary. I didn’t know I was having a stroke, which also seems kind of unique. I didn’t have any kind of major headache or a real moment Oh my god like what’s happening to me? Where I’ve heard a lot of other people’s stories of them having a real like sudden something’s happening now I need to get to the hospital.

    Derek 5:09

    For me, I had a vision problem I just started to have vision problems. I was driving to work one day and almost got in a wreck and I was a very cautious driver and always checking over my shoulder and just making sure that I was driving safely and you know, using my turn signals and all that stuff. One day on the way to work I almost got into a wreck I looked over my shoulder to merge into traffic and on the freeway and to me, there was no car there.

    Derek 5:44

    But there was a car there and they honked their horn at me like you know, and I’m like, That’s weird. I swore I checked well. I didn’t see anything. So that was strange. And then I got to work and I’d noticed that I was having trouble reading my emails, like just, I was a computer programmer, kind of right out of high school. I started working on the internet as a programmer.

    Derek 6:10

    So I happen to be fortunate time and place to have learned how to program HTML for the internet when it was still in its infancy. And I ended up working at Verizon and that’s working on Verizon.com, and that’s where this all happened. And so I went to work that day and had trouble reading my emails. It was just strange. And I couldn’t figure out why. I just noticed that I, you know, get to the end of a sentence and then end up in the middle of the next line. Like I just couldn’t figure it out. I did. There was no real. In my field of vision, there was no real like, I couldn’t tell it’s really hard to explain.

    Derek 6:55

    And so I didn’t know what was going on. And then I went to lunch and I had trouble reading like the menu and I had trouble, you know, reading the signage behind the register. I think we went to like check later or something for lunch and I say I having trouble figuring out where things were, and it was just kind of more strange.

    Derek 7:18

    And I felt fine. I felt normal. I didn’t think anything of it. I thought, Well, my parents and my brother have glasses. Maybe I just need glasses now. No real other thought then then. I guess I’m having a vision problem, you know, like, but I felt fine. So you know, there was no real, immediate urgency to me. And so that went on for a couple of days, two or three days.

    Derek 7:50

    I probably just was like, it’s just weird here. And I ended up you know, just talking to some co-workers about it. And you know, I was having trouble and told my boss, you know, I’m having some trouble. But that may be why I’m not responding to emails as quickly or why some of the programming code that I was writing might be a little off and I just had trouble seeing the screen.

    There’s nothing wrong with your eyes

    Derek 8:19

    After a few days of that, a couple of my coworkers were like, you should probably go to like an eye doctor. Like yeah, I guess probably. I might as well you know, like, maybe it’s my time to get glasses, you know. So I just scheduled an appointment with a local optometrist and went to see this guy in the middle of the day, you know, I’d gone to work that day and got permission to take a long lunch and got to see this doctor and that’s when things got real crazy.

    Derek 9:00

    He did every test in the book and he seemed concerned like he wasn’t saying it but it was taking a lot longer than everything and then I would have thought it would you know, all these tests I wouldn’t have thought I would have had to do and he went away into you know, left me in the room for a little bit and came back and it was one of those like movie moments of just like, well Derek, I’ll never forget it. He likes verbatim like what he said he’s like, I think you’re old enough and mature enough to handle what I’m about to tell you.

    Derek 9:42

    Like, I need glasses but that’s fine. It’s not a big deal. Just make the glasses. Like it’s like, why is it so dramatic? And he said well, you know, I did all these tests, this test, and that test and your eyes are fine. You know, there’s no nothing wrong with your eyes and I’m like dude, yes there is like I’m telling you I have trouble reading. Can’t see this. I almost got in a wreck like, I need help there’s something wrong and he’s like, well, I didn’t say there’s nothing wrong I said there’s nothing wrong with your eyes.

    Derek 10:15

    You know, you see there’s no disconnected retinas. There are no tumors, there are no scratches on whatever, like your eyes are fine. Like so what is that? What are you trying to say? And he’s like, I think there’s something wrong with your brain. I don’t know what it is. I couldn’t tell you. But I think you need to go to the hospital like, now like, an emergency like, do you have family nearby I was living on my own at the time I’d moved out of my parent’s house when I was 17.

    Derek 10:53

    I started working and got my place moving with some friends then I ended up moving on my own and so yeah, my mom, my dad, and my brother are all in town, and it’s like you need to call them they need to meet you at the hospital you need to go now. And like, This is crazy. Like, what’s the big deal? Like what do you mean something wrong with my brain like, I don’t understand what like, I mean I was 19 years old I was a kid, right?

    Derek 11:19

    So like, none of this ever registered. I’d never been in a hospital in my life except for when I was born. But you know, I never had a broken bone. Like I never needed any kind of emergency treatment of any kind ever. And I ended up calling my dad and well, I called my mom first Southern Texas mama’s boy here. I’m originally from Texas, so she didn’t answer. So I called my dad and I said, You need to come to the hospital.

    Derek 12:01

    He was sending me to Baylor Medical Hospital in the Dallas area. And dad’s like, what happened? I’m like, I don’t know. I don’t know what happened. I just had some trouble seeing and almost had a wreck I went to an eye doctor and he’s telling me this is like something serious I need to go to a hospital.

    Derek 12:23

    So I drove myself to the hospital. I was still feeling fine, like no big issue. And they, you know, on my way out of the optometrist’s office, I’d heard him calling over there. And he was calling the radiology lab at at Baylor saying, It was later in the day saying, I’m sending someone over to you. I have a patient coming and he needs to be seen now it’s an emergency don’t close down for the day somebody needs to be there to see him and get him an MRI and, I heard him say this is life or death. And I was like, What are you? What is going on? I felt like I was in a dream.

    Bill 13:14

    And had let you drive?

    Derek 13:16

    And yeah, I mean, I had my car. I mean looking back on it now I’m like, why didn’t he like call an ambulance? I don’t know. But, I mean, I am blessed that this guy this optometrist it was a real small little operation not like some, you know, not like I didn’t go to the best guy in town or anything. Maybe he is but it was just a tiny little place of an optometrist like in a strip mall.

    Derek 13:40

    And I’m so blessed and fortunate that he was smart enough and, you know, took the time to do the tests and realize something critical was going on, you know, he didn’t just like send me on my way. So I went to the hospital right away and I got an MRI and came out my parents were waiting for me and what happened? What happened? And I’m like, I don’t know, nothing we don’t know. I just waited for the MRI results and the doctor came out and said, well sit tight.

    Derek 14:15

    Your, brain is bleeding. So we might have to do emergency brain surgery, you know? But we’re not sure yet. So just kind of hang out. And it’s the most bizarre thing in the world to me, you know, like, and the doctor came out and thought that it was my dad, that was the patient because he didn’t look at the age of the patient.

    Derek 14:40

    And so I think he thought brain bleed AVM whatever. I mean, I don’t know if he knew it was an AVM yet. But all the doctors that I saw that day like they come in and they address my dad, like, because he was the older gentleman in the room and I was a kid so they didn’t think it was me and then they start talking to him. Well, it’s my son.

    Bill 15:06

    Did you end up having surgery to remove the AVM?

    Derek Van Oss had Cerebral Arteriogram on his birthday


    Derek 15:10
    Not then not right away no. So what ended up happening was, you know, I spent the next, you know, month in and out of other hospitals seeing other doctors tried to figure out exactly what was going on all kinds of tests and you know, I had a cerebral arteriogram on my birthday. Like, that was like my birthday present, I don’t know if you were, any of the people that may see this have had one but it’s, it’s a cringe-worthy process of having a line put up your femoral artery, which is the big artery in your crotch area.

    Derek 15:49

    And they send that all the way up into your neck and release dye into your brain to take a 3D image of your brain. And you’re awake during this and it’s just really they were telling me I was gonna have to do that on my birthday. I was just like, this is just creepy. And I don’t know, I don’t want to do that.

    Bill 16:09

    I had that same procedure. I relate to a lot of what you said because I had a bleed in the brain. It was an AVM that happened when I was 37. I ignored it for about seven days, I had numbness on my left side. So I didn’t realize that it was a brain bleed. I went to the chiropractor and the chiropractor told me that something was going on with my brain, and I needed to go to the hospital.

    Derek 16:33

    Did you have to drive?

    Bill 16:34

    I also had to drive. Yeah, because I argued with him for quite a while I said to him, I can’t go to the hospital. Because I’ve got to go to work tomorrow. If I go to the hospital, are they gonna have me there the whole weekend? I’m not going to be able to get to work you know, inconvenient. So then one of the tests that they did sit around seven days later was that procedure.

    Bill 16:57

    They ran the catheter or whatever it was they ran the pretty sure some kind of a catheter some kind of a cable into the artery and the brain and they released this whole couple of different things in my brain and one of them was the dye. And when they released the dye, I had this massive internal experience of like, inside my brain. I would like to see neurons firing off. It was like, fireworks going off in my head.

    Derek 17:33

    Yeah, they said your brain going to feel like it was put in the oven or like a microwave because it gets really warm for some reason. And then you’ll probably see like a star field or like you mentioned kind of fireworks kind of explosion sensation and yes, really bizarre. So leading up to that, you know, I’m just thinking squeamish about all this, you know, going like, what are you trying to do to me? Like what? Like, just give me the glasses.

    Derek 18:08

    Like there’s nothing on my brain I don’t believe you like I mean I believe them because they showed me the MRIs and it shows a big splash of you know, white blood in my brain on the MRIs, but it was about the size of my eyeball. You know, it’s the same size as the blood patch. Right? And yeah, so over the next month, I just was in and out of hospitals and doctors’ offices trying to figure out exactly what was going on and where it was and how it happened. And is it stable? Is it not like how much of an emergency is this right now?

    Derek 18:49

    And ultimately, it was kind of decided that well, apparently it had been bleeding for a while. Maybe Weeks could be months, they could tell by the kind of the the color, the shade of the blood on the MRI how old the blood is, and how fresh It is based on how dark it is and how bright it is. And so that there was a lot of darker blood, which is I guess, the way they described it was like that was more like dried older blood in the brain matter.

    Derek 19:28

    So they could tell that it had been there for a while. And bleeding and bleeding little by little over time, it eventually bled into my optic tracts and caused vision impairment. And for whatever reason, it never caused any other symptoms. Up until that point, like every time the doctor came in, they’re like, are you sure you feel okay? You should be having the worst headache of your life like you should be on the ground in a fetal position crying in pain and I felt normal.

    Bill 20:04

    So do have any, any feelings of pain or anything like that just numbness just numbness. big toe.

    Derek 20:11

    That seems pretty uncommon. In most of the other stories I hear people have massive headaches and real just or they have the onset of weakness, and numbness right away immediately. And that’s what so I don’t know I guess I feel fortunate that it was just my vision problem thing.

    Bill 20:31

    So then did you go through several months before surgery, it took me nearly three years to get to surgery. How long did it take you?

    Intro 20:41

    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. How long will it take to recover? Will I recover? What things should I avoid in case I make matters worse, doctors will explain things but, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 21:05

    If this is you, you may miss out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website now, recoveryafterstroke.com and download the guide. It’s free

    Derek 21:53

    Three years. No, so this all happened in March of 2002 and I didn’t know I was having surgery till October of 02. So it did happen pretty quickly. But I mean the doctor’s plan was when, because it’s been bleeding for a while, and you’re not having any major, like debilitating symptoms other than your vision loss.

    Derek 22:20

    You know, still able to kind of, you know, function and get up and I mean, I went to work or, like, it just wasn’t safe for me to drive at that point. So they said, Let’s monitor this, you know, I was going to the doctor every, few days, you know, not getting scanned every time but, you know, like, just for checkups, you know, like, how are you feeling, you know, on the scale of one to 10 and all that kind of stuff.

    Derek 22:49

    And I did that for a few months. They also said, You know, I was young enough that they didn’t want to just want to crack my head open and start messing with me. Like you’re pretty young. And when you’re that young, your brain and all your other vital organs and everything has a much higher propensity for healing.

    Derek 23:11

    Not that the brain matter heals, once it’s been bled into, I don’t think that it does. But it can, you know, find new neural pathways to do those things. But the optic tract is one of those pieces of the brain that just once it’s been damaged, doesn’t prepare itself. It can’t or, I don’t know, this was 18 years ago, maybe that’s changed since then.

    Homonymous hemianopsia caused by stroke

    Derek 23:39

    It’s still the same. So I have a full left-sided Homonymous hemianopsia is the technical term. A lot of people just call hemianopsia the entire left side of both above my eyes from the very center all the way left. Um, yeah, I guess it’s more of a curve that is completely blind, so it’s completely gone. So anything I look at straight on, I only see half of it.

    Derek 24:06

    Like I’m looking at the screen right now. And, you’re in the middle, I only see, which I guess is the right side of you. So I scan around a lot, as long as I’m looking around a lot, I can take everything in. But it makes everything extremely difficult to read to see, you know, I’m always kind of looking around people think I look kind of paranoid, because I’m, I have to check things out, you know, to make sure I’m seeing everything.

    Derek 24:36

    I’m always looking as far left as I can. So basically, like where your peripheral vision ends on a normal person. Mine just ends right in the middle of my eyes. So it’s not like, you know, one of them’s good, and one of them’s bad. They’re both 50%

    Bill 25:00

    So you have a narrow vision of the field.

    Derek 25:04

    Yeah, it’s a visual field cut as they call it. I guess. So it’s pretty crazy to think about. That’s how it is. And I mean, I’ve adapted to it well. It’s been 18 years. So I’m pretty good with it. But I guess yeah and I ended up going through all that monitoring. And then one day at work, I’m still going to work I just had a coworker picking me up and driving me to work that live nearby.

    Derek 25:34

    And I didn’t feel safe driving and so I had a co-worker taking me to work and I was still going and one day I had trouble typing with my hands, you know, and it was my left hand and a little bit of a foot kind of weirdness. It was subtle, but on my hand, it was noticeable. And I was having trouble typing. And this was, I think, in August, so then a few months from March when all this first happened, and, I guess it had been long enough that I didn’t even really think anything of it again.

    Derek 26:16

    And I thought maybe I was getting carpal tunnel syndrome or, like, stressed out or, you know, it’s just like, I had just been to my uncle passed away, and I’d been to the Boston area to go to his funeral. And so I’d flown out there and flown back and work and, you know, like, had dealt with the stroke stuff and I just, I didn’t think much of it again, thought I’d it’ll go away. And I went to lunch with a co-worker and was telling her about it.

    Derek 26:55

    She goes do you think that this can have something to do with that stroke stuff that happened to you a while back? You know, it’s August now so, I’m like, oh wow, um, I guess they did tell me if anything happened, it would be weakness or numbness on my left side. And it was my left hand that I was having a problem with so I’m like, wow you know, like, we’re so naive to, you know, like to think that anything could ever be wrong with us.

    Derek 27:30

    And I think especially more so when we’re kids. You know, I was, I mean, I was 20 at that point, but I was still a kid. So I called the doctor right away and was like, I think something’s going on and they said, you need to come get an MRI now like leave work. Don’t even bother telling them they’ll try and get you to stay or tell you it’s nothing like just leave and come now.

    Derek 27:54

    So I went and got another, you know, rush MRI. I told my family Come meet me and they kind of came out like they did the first time and said, well, you know, it’s bleeding, some more bleeding again, you know. So now this is serious it’s like DEF CON five or whatever. So like, what do we do, you know, and the doctors say, you know, some people have AVMs and had these bleeds that go their whole lives and never even knew they had a bleed, you know, like, until an autopsy happens and, you know, like, the family finds out or, I had I was living with an AVM for probably months and didn’t know it was bleeding.

    Derek 28:43

    And sometimes these things stabilize and people can go and live the rest of their lives with no intervention and you know, no kind of other additional problems. So it seems like at the first incident, most doctors say let’s monitor this, let’s get you on a plan to see regularly and make sure unless it’s already wrecked some kind of function pretty badly.

    The 2nd incident led to Derek’s surgery

    Derek 29:09

    And at two incidents, it’s probably time to do surgery, it’s probably time to intervene. Because the third one’s most likely going to kill you. Was basically what they were telling me, you know, like three strikes and you’re out kind of thing. And it was really deep in my brain, like if you cross-section like over the ear from the center like it was really deep inside their basal ganglia area.

    Derek 29:38

    I think they were saying I had to look back to my notes I had them on file, but I was really deep in there. So it was bleeding towards my brainstem. And they said, if you bleed into your brainstem, your death kills you instantly. Right? So they’re like, they bled a little more into something that was, you know, affecting my hand and partially my ankle, it felt like at some foot drop.

    Derek 30:10

    Real, subtle at that point. And so they said, you need to think about it. We’re recommending surgery, I remember my dad asking. There was a neurosurgeon. I think he was there at the time and asking him if this were your son, well, what would you do? You know, and he said that he would do the surgery, you know?

    Derek 30:40

    So I spent the next few months doing a lot of soul searching and deciding, you know, they said, like, you need to probably figure out what you want to do as quick as you can. And we wouldn’t recommend, you know, taking too much longer to make the decision. But surreal, complicated surgery. It’s really deep in the brain there are not a lot of people that could do this. I guess, and you’re gonna get me all choked up just thinking about this.

    Derek 31:22

    It was time to explore the idea of surgery and well who’s going to do it and you know, where is it going to happen and what are the odds? And you know, like, is this going to make things worse? You know, could I die? You know, and that was one of those that they answered pretty quickly was you know, it’s not a matter of if more a matter of when this could kill you. Tomorrow, it could kill you. a month from now it could kill you 10 years from now, but if it continues to bleed in the direction that we see it’s bleeding, it’s going to kill you. So the surgery could also kill you.

    Derek 32:05

    Very, very risky surgery. And I started meeting with neurosurgeons or you know, the, the guy, some of the doctors would send, notes out to their colleagues and say, you know, I have a patient, you know who amongst you feels like they could do the surgery. And some surgeons said, no, I don’t feel confident that could be done safely and that he would survive or you know, and I was kind of going all back to, you know, I was 20 years old. I like to make that kind of decision was the scariest kind of moment in my life.

    Derek 32:52

    And like I said, I did a lot of soul-searching and spent a lot of time with family and friends. went on a leave of absence from work so I could focus on you know, taking long walks and drives and listening to a lot of music and spending time at my church and ultimately ended up deciding to do it and felt confident and ready, and that I’d found the right doctor and there’s a whole like story about you know, finding talking to some of the wrong doctors or doctors that that seemed just like totally in Fantasyland about. It was really strange and kind of a random series of events.

    Derek 33:43

    Through like, my aunt, I knew a guy in Chicago or somewhere that from like 30 years ago that’s a brain surgeon, and like he referred this to that, like this random series of events ended up getting referred to a surgeon in Dallas at a hospital near there, where I was that felt ultra confident about it. And I felt confident in him. And so I had the surgery on October 16, 2002.

    Bill 34:17

    Wow, that’s a massive story. I relate to a lot of it because I had a similar issue with my doctor as well. I sacked my first load of doctors and I went to a different hospital. And one of the reasons I did that is because they didn’t have confidence in what they were telling me. And I’m not saying that my surgery wasn’t risky. Opening anyone’s head is risky, regardless, but again, was deep in my brain as well.

    Bill 34:45

    And I remember the first surgeon going, No, we’re not going to touch it because we don’t know what’s there and we don’t want to cause any further problems, which I understand. I’m very happy that they said that but then I was thinking about what happens if, you know we do need to operate later and you’re not confident, I don’t like going into surgery with somebody who’s not confident I’d rather go into surgery is somebody confident.

    Bill 35:12

    And I know the risks. So I found another doctor who we flat. We just bluntly asked her the question, you know, we just said to her, listen, this is something that you can do. Are you confident in doing this surgery? And she just looked at us and said, I’m a brain surgeon. That’s what I do. I do these things every day. So yeah, you can do this.

    Bill 35:33

    And I think we’ll get a really good outcome, but there could be some issues. So you need to be aware that we’ll have some issues, but we’ll get rid of that blood vessel out of your head, you know. And that was it. And I said, Well, okay, so what’s the plan forward? And then she said, Well, we’ll just take our time. We’ll do some regular scans.

    Bill 35:51

    We’ll monitor it and we’ll see what happens. And then my bled mine bled a third time nearly three years later, and she said the same thing to me. She goes, we’ve got to go in and get this out now because the risks of it staying in there are far greater than the risks of surgery. And you want to avoid this happening when you’re driving or when you’re with the kids or any of that kind of thing. I said, Well, I agree with you, I trust you, I’ve got confidence in you. And let’s book it in so we did you know, what did you wake up with? Other than the vision issues? Did you wake up with any other issues?

    Derek 36:27

    Yeah. It’s funny, like, cuz that common phrase, you know, it’s not brain surgery. Like, man, when you’re dealing with all this, it’s like, it is brain surgery. Which, you know, it’s like funny I have a friend from a friend of mine from high school who you know, he like he’s a rocket scientist now like, literally works for Virgin Galactic. It is like, it is rocket science. It’s weird when you get to these places And those phrases come up and like, whenever somebody says that I always have this brain surgery,

    Bill 37:08

    Brain surgery, which means it shouldn’t be that hard, but now it is brain surgery. It’s bloody hard.

    Derek after the surgery

    Derek 37:15

    Yeah, I so going into the surgery that like I mentioned, you know, one of the risks, you know, I remember the day, the morning, you know, super early in the morning like 4 or 5:30 something like that in the morning, I had to show up and sign a waiver saying, you know, that I understood that I could die and you know, and I had to sign it. I want to do a DNR Do Not Resuscitate. You know, if I end up a vegetable or whatever, like, in a coma, you know, like it’s bizarre, and you know, they told me that the risks of going into the surgery were that it could kill me or that if it didn’t do that. that it could cause worse troubles on my left side probably bleeding on the right side of the brain causes problems in the left side of your body.

    Derek 38:10

    But they felt confident that they could get it all out. And that I would be fine. There was a lot of confidence in the room and I felt confident and relatively comfortable for 20 20-year-old going into brain surgery. But yeah, I ended up waking up. You know, it’s like, all day surgery, eight hours, whatever, 10 hours I don’t remember my mom she was there the whole time. And I remember waking up and there was just a bunch of people around in white coats and all that and they started testing me.

    Derek 38:54

    About, like, do I know what day it is what month, or what year you know, is it Day or night outside right now, if you look out the window kind of thing, who’s the president? Which I guess at the time was bush. Like, and then they started testing my limbs, you know? And so, can you squeeze my finger and the finger in your hand if you squeeze my finger, that kind of thing, and I remember them doing it on my left hand and I couldn’t do it.

    Derek 39:28

    And I didn’t get it. I’m still coming out of anesthesia, I guess, and groggy and all that but then they did my right leg. You know, I’m laid out flat in a bed and lift, can you they put their hand over my toes and say, Can you lift your leg and touch my hand with your toes and did that with my right leg and then they did my left leg and in my head, I was trying to move it and I couldn’t move it to touch their hand above it. So I put my right leg under my left leg and lifted my left leg with my right.

    Derek 40:06

    To touch their hand and, and she said, I remember she’s just like, Oh, we got a wild one here. Something like that, to that effect, they all laughed and thought it was a funny thing. I mean, I didn’t even really know I was doing that. But I guess I just had kind of a problem-solver mentality or something like it hadn’t hit me yet that anything had happened. But essentially, I woke up with the left side of my body completely paralyzed. Zero function from head to toe, my face.

    Derek 40:45

    The you know, the side of my eye. Total split just like my vision 50% split in the middle like 50% split down my body. The left side had zero function. I couldn’t move anything. And so I guess that’s when my journey started, you know, was like I stayed in the hospital for a month. They said I could leave when I could walk out. And so I you know, and then on October 16 and left on November 16 I could walk with like a cane or walker a few steps, but I could walk you know, I wasn’t walking like but I can hold and support my weight with a cane or you know, the device and I was able to get a few steps outside of the threshold of the main doors of the hospital.

    Derek 41:41

    That was like the goal. Their whole thing was we need to get you walking in. That’s the most important thing right away: trying to avoid letting my leg atrophy and never end up being able to be used properly again. And so I spent, you know, all day every day, for that month in therapy you know, occupational, physical, psychological, cognitive, just began this huge program for the next several years of therapy was really how it went.

    Bill 42:25

    You’re quite a long time out you’re 18 years out. What was support like then as a young guy who was experiencing stroke and recovery? Did you have any support networks on the internet that didn’t exist like it does now?

    Derek 42:42

    No. There were support groups within the hospital community, like so. You know, I was an inpatient in the hospital in a therapy program. And so I had there were other patients around going through it. Most of them were, you know, two or three times my age. So even though I had people around, I didn’t have a lot of people I identify with, I guess, I made friends quickly with the older people and it was great. I still remember some of them very well. And yeah, the internet, Instagram, YouTube, Facebook, none of that existed yet Twitter and like, nothing like that. And so it was kind of guerilla-style, support and you know, I said to kind of lean on my friends and family.

    Bill 43:44

    As a young guy. Did you feel isolated?

    Bill 43:46

    Yeah, I mean, I was pretty involved in my church at the time. Do all this and they were ultra-supportive. Fellowship Church in Grapevine, Texas. amazing group of people. We’re there kind of with me the whole time and, it was, it was but it was difficult you know, I felt isolated in like I didn’t have anybody to relate to with it others there’s a side story with a real dear friend of mine that I met through this that and she went through a brain surgery the same day the same place and like and we didn’t know each other and we ended up meeting we had a mutual friend.

    Derek 44:36

    It’s so strange. And yeah, we ended up getting to me and she had a rare disease moyamoya disease, which is super rare and she was 17 at the time and I you know, I was 19, 20 and you know, I got out of the hospital we were able to meet and we ended up dating. It was a really special thing, but it was also a complicated time and complex for both of us.

    Life will never be the same


    Derek 45:13
    And I think especially me, kind of feeling like, my life would never be the same. Will I ever get any function back in my hand, my, you know, will my leg ever be able to run or you know, whatever, will my vision get better will I ever be able to drive again? And I kind of felt like life was kind of over as I ever knew it. You know, and I had been on such a kind of accelerated path into my career, having kind of locked in and I mean, worked hard to get into the internet industry right when it was taking off. Then all of a sudden had to put the brakes on because I almost died.

    Derek 46:01

    And I was able to move out on my own and I had to move back in with my parents. It was real dark times, you know, it was real difficult to get through that. And the support groups that I see now, are just so amazing to people like what you’re doing with your podcast and your outreach all over the world to people like this is amazing to me because now I see people like that you’ve had on your show like that, you know, like I mentioned are still fairly close to the point of impact, you know, within the last few years that have just made so much progress and just seems so positive and ready to seize the day and that they know that there’s thousands of other people out there that have gone through this and that can go on YouTube and see people you know who have hemiparesis and see how they do things with one hand.

    Derek 47:03

    You know, like seeing this guy, Jason Lester, who only has functional use of one of his arms, run Ultraman contests all over the world and be able to swim, you know, dozens of miles to open water with one arm like, yeah, like, I never would have, you know, like to find those kinds of stories, I would have been into that kind of stuff. And to meet people like 18 years now and I still haven’t met like, or randomly run into people like have gone through a lot of the similar same kind of stuff.

    Bill 47:40

    Yeah, where do those people hang out? It’s interesting because I haven’t found anyone, unless I go to a stroke event or some kind of an event where stroke survivors are, you very rarely run across somebody who’s had a stroke and is happy to have a chat or is, looking out for you, and I think for me, one of the issues might be that I don’t appear like I’ve had a stroke.

    Bill 48:08

    Yeah, I have the same problem. I’ve gone to work at places where people I’ve worked with for a year never knew. And like what happened to you? Like, I don’t believe you, They never noticed that I only type with one hand. And it and that’s kind of a blessing and a curse, right? You know, like, cuz sometimes it’s nice for people, it’d be nice if they recognized like, the reason I’m acting the way I am or I’m doing something differently is because I had this issue, but I’ve managed to make it so. not noticeable, you know, and that’s not necessarily on purpose. I mean, to a degree, yeah, I mean, but that’s a double-edged sword, right?

    Bill 48:57

    Is It is and it an invisible disability you know people talk about invisible disabilities and as a result helps me relate better to people who have mental health issues and understand you know that one of the biggest issues is discussing this and talking to people about it and making them understand that appreciate what’s going on. Did you experience some mental health issues with depression or anything like that as a young guy?

    Derek 49:28

    Oh, yeah. As I said, it was a dark time. And I mean, to be honest, like, me talking to you right now. This is like the first time I’ve ever talked with anybody on a like over the internet kind of in a video chat thing about this thing. I mean, I talk to people in regular day-to-day life about it quite frequently. People ask and are curious when they notice and I’m an open book and happy to answer questions or tell them the story. You know, it’s something I’m proud that I’m alive to be able to tell the story.

    Bill 50:10

    Hi there everyone. I just wanted to jump in here and let you know that for the next 10 minutes of this episode, Derek and I will begin a discussion that is about self-harm. If this is something that you would rather not listen to, you can just stop this episode right here and not continue or skip to the 60-minute mark.

    Bill 50:30

    More importantly, if in the past, you have had thoughts of self-harm, I’d like to encourage you to seek out somebody that can support you with this in your local area, be it a friend or a personal. More importantly, if in the past, you have had thoughts of self-harm. I would like to encourage you to seek out somebody who can support you with this in your local area. Be it a friend or professional counselor, your doctor, or any other person that may be able to assist.

    Bill 51:03

    If you can’t get out and about due to Coronavirus restrictions, seek out a professional who can help you online or over the phone. Please remember that it’s okay to ask for help, and you can get through this.

    Derek wanted to end his life


    Derek 51:17
    But yeah, for the first few years, it was a real, real dark time and there was a day, I guess, yeah, one day where it had gotten so bad that I almost attempted suicide. And it was kind of a real divine intervention kind of thing that I didn’t because I it was like sitting on the side of my bed in my parent’s house, like you know, I’d had to move back in. I had been in therapy all day and I went to bed at night saying, well, like, I’m going to go to bed. And if I still feel the same way in the morning, then I’ll wake up and I’ll just be done with it.

    Derek 52:09

    I woke up that morning, and I still felt the same way. And I felt like I’m kind of done with this. Like, who cares? What’s the point, there’s no real it’s not going to get better. You know, or it’ll only get a little better, you know, and it’s still just, it’s just gonna, I’m never gonna get to go back to work and be independent again, at my parent’s house.

    Derek 52:34

    You know, nobody’s ever gonna love me. All the every thought that you know, I’m sure you and other people have been through facing this kind of adversity or coming up against a wall like this. And it’s a wild thing to think I sat on the side of my bed and I thought, well, I don’t want to do anything messy. I don’t want my mom to have to clean up any blood.

    Bill 53:04

    You’re very kind and caring like that man, you’re thinking of ending your life, but you don’t want to make it bad for somebody else. I’m adding some humor into that but I understand what makes people think in that strange way, you know, it’s about relieving the pain and suffering that they’re in. But obviously, somehow also do not want to create too much pain and suffering for anybody else.

    Bill 53:34

    If somebody’s listening to this, and they are going through a tough time right now, I’ve just got to say, reach out to somebody that can talk to you that understands you, that relates to you. I’m more than happy for people to get in touch with me, [email protected] if you’re listening to this podcast episode, and you’re feeling that way, please just reach out and ring your local support organization.

    Bill 54:00

    Whoever they are, because there is a way through that. And Derek is a perfect example of somebody who’s been able to get through that. And I have a lot of those issues and be independent. So I understand you, I know why you might have been thinking like that. And I made light of Derek’s process of thinking at the time. But I know it’s a serious thing. And I truly understand and believe why you might be feeling that way. So I’m glad that you didn’t make that decision Derek.

    Bill 54:17

    I want to make sure that like, you said, If anybody’s watching this, the thing that struck me that day as I was about to do it is kind of a become a mantra. And it stuck with me for the last 18 years. You know, like I said, I don’t want to do anything messy. So I decided I would just swallow a bottle of all the medications that I was on, you know, I mean, I was done like six or seven medications that had all the bottles next to my bedside, and like, I bet if I took all those would probably kill me, you know, and it probably wouldn’t be too painful.

    Derek 55:11

    And it probably wouldn’t make too much of a mess, you know, like so that’s what I decided I was going to do. And it’s really strange, really bizarre, but it was so quiet in the house and I knew my parents were home and it was it was early in the morning. But it was so quiet and it just was too quiet for me. And I just needed a little bit like because I’m thinking through this and like, Am I about to do this and I like think I’m going to do this.

    Derek 55:43

    I’ve got the pills in my hand and like, but it’s too damn quiet. So I turned on the TV in my room. And it’s really strange, but I turned on just whatever channel was on was on And, and the movie Good Will Hunting was on. And I don’t know if you’ve ever seen it. But it’s an amazing movie, one of my favorites, if not my favorite for more than what ended up happening but towards the end of the movie Robin Williams’s character and Matt Damon’s character are in a therapy session and Robin Williams kind of comes at Matt Damon and in the time of kind of talking about what he’d gone through its life of being an orphan and being attacked and abused and kind of why he is the way is and why things are the way that they are.

    Derek 56:40

    And Robin Williams his character reaches out to him and just says it’s not your fault. And, he just kind of keeps going, it’s not your fault. It’s not your fault. And you know, he’s like, Okay, I get it just leave me alone. Like No, it’s not your fault, it’s not your fault. And you know they hugged and he has a breakdown, he just cries and just is destroyed by realizing like this, all this stuff that’s happening and happening and the reason that he is the way that he is, and it’s not his fault, there was nothing he could have done about any of that stuff that happened to him.

    Derek 57:19

    And, and, for me, that’s how I felt, you know, was like, I just felt so helpless and destroyed by this thing that I had no control over, you know, like, this just happened to me. And I was blaming myself, you know, and my parents are blaming themselves. And, you know, like that it’s my fault for that I’m not going to get to have a normal life again, or go back to work or be independent again, and I was blaming myself and it’s just, it’s just tearing you apart. And you know, it did and it got me to a point where I wanted to kill myself, and for whatever reason this movie was on when I turned on the TV at that exact spot.

    Derek 58:03

    And it was exactly what I needed to hear, and I don’t know about you, but to me, that’s divine intervention if there ever was a point of divine intervention in the world, I, that’s not a coincidence too, like no like that was meant to happen at that day at that time. Does that scene that movie, whatever, like it was made for that? And I mean, I know people have those kinds of experiences all the time. And I don’t think that is a coincidence.

    Derek 58:35

    Like, that seemed that those words that were written and that was filmed and it was acted like it was made to save my life. It’s just incredible. And it lights which just went off in my head, like, what could I have done about this? Like, there’s nothing I had, like I had from that point right there. That’s when I decided like, it’s not my fault. I have to get through this. Like, I have to figure out how to get through this like There’s gotta be a way.

    Bill 59:01

    Yeah, an easier way for everybody to get through what they’re going through. They’ve just got to be brave, to seek out their path. And then, and then get people to help them on that path. And on that journey, because everybody’s different, and everybody needs something different. You know, when we connected the first time we connected on the third of April 2019. And you wrote, you would love to chat with me and share to reach people through the work that I’m doing. Your stroke recovery journey, you’re talking about yourself was a positive one that you’re blessed to have. Tell me about that. Tell me how has this experience become a blessing?

    Derek 59:48

    Well, I mean, it’s one of those things you’ve learned through the process and through talking with other people that have experienced it and through talking to with like, staff and the care facilities and that, in particular, as somebody so young when it happened, a lot of the most of these things happen to people later in life, you know. And so the recovery process and kind of the outlook and it’s different when you’re when you’re young versus when you’re old when this happens. I mean, there’s not a real line in the sand, right? Like, like, here’s where it becomes different.

    Derek 1:00:33

    But as it is somebody who has their entire lives ahead of them before they even fully matured or able even able to legally drink or any stuff. It’s pretty different. And I learned so much about myself and about life and about people and about strength and perseverance and attitude and, like what I’m capable of and how to solve problems and how to connect with other people and recognize that we’re all kind of dealing with our issues.

    Derek 1:01:18

    We’re all broken in some way. We all have adversity in some way or another. And there’s a lot of the stuff that I’ve learned I’ve been able to kind of help others with that knowledge or that kind of understanding, or maybe just the way that I’ve thought about things and how to work through some of the stuff hey, here’s what worked for me. Maybe try this or here’s how I do it or you know, I’ve been able to go into volunteerism and work in hospitals and with other stroke patients and physical therapy units and or just random families that, a coworker of mine.

    Derek 1:02:05

    One time, I met a family who had a child that had. I don’t remember exactly. He had a stroke I think he was nine or 10, or something very young. And this was one of my co-workers who never knew anything had happened to me, like you’re saying, like, never notice. And then one day, he noticed, we talked about a little bit and then he ended up at like a party with some people and they were talking about their childhood and had something similar and he’s like, I know this guy you guys should connect.

    Derek 1:02:46

    Like, maybe. He asked me, Hey, can I give them your information and like that kind of stuff and can be with them and, you know, they had questions about you know, how, how should we approach this? How do you do this? Or, you know, like, how do you put a jacket on with one hand or, you know, brush your teeth? Very, very trivial stuff to very complex stuff about like, dating and you know, sexuality and there’s just so much that I’ve kind of had to work through that.

    Derek 1:03:22

    So, it just feels like a blessing that I’ve had the experience and then I get to know I’ve been able to go through the last 18 years kind of felt like a project, you know, like, rebuilding my life, you know, rebuilding my career and being able to go back to work rebuilding my independence and being able to live on my own.

    Derek 1:03:46

    And, this all happened in Dallas, and, you know, I moved to New York City in 2004. That was, one thing I did for me was to get away from where all this happened. And move on with life in this I chose to move to New York City and throw myself into the deep end of figuring out how to live an independent life and you know, in a place where you didn’t need to drive. Because I couldn’t. And that was one of the best things I’ve ever done in terms of therapy as I moved away and moved to the most, quote-unquote difficult place to live in New York City, for a disabled person.

    Bill 1:03:48

    Is it? I’ve been to New York City. It didn’t seem that it was a difficult place to live to look. It looks like there’s plenty of access, but maybe.

    Bill 1:04:45

    Yes and no. I mean, to me my experience, and again, this is in 2004. And I was there from, 04, to 07 and a lot of things have changed and there’s been a lot of progress made in terms of accessibility. In recent years, there have been a lot of groups that have advocated for fixing sidewalks and making sure that the elevators and subway stations are operable even now with Uber and Lyft and everything in the city there’s a certain number of accessible vehicles in the fleet that people are driving.

    Derek 1:05:17

    That’s a thing that has been worked on, which is amazing. But back then, you know, no, not considered. You know, elevators were very often not operable, and the subway stations for weeks or months at a time. So I knew that I’d have to get off at the station before and take a cab because I couldn’t walk 10 blocks, you know, that kind of stuff.

    Derek 1:05:46

    One of the most difficult things in regards to living in a city like that or anywhere really, because I don’t appear that I have a visual impairment I run into things a lot you know, even though I’ve adapted to it real well I still run into people I still run into polls I still tripping hit a fire hydrant with my chin the other day, like, really hurt.

    Derek 1:06:18

    Big old bruise and like I was on the ground. Just didn’t see it, you know, like, because I wasn’t scanning well enough, sometimes I’m off my game but in New York City when you’re crammed down in the subway station and people at rush hour and Manhattan, like there’s, you run into things you run into people and one day, you know, I ran into a guy, I’m a pretty big guy. I’m six foot four and 200 pounds, right? Like most probably a bigger time, but I’m a big guy and I ran into an even bigger guy. Like, a bodybuilder type guy on the subway and I ran into him pretty hard, and he got upset about it.

    Derek 1:07:05

    Like, you know, you need to watch it, you know, watch yourself, bro. Like, it was like in my face You know, like, I’m sorry I’ve got a vision thing I didn’t see you there like, yeah whatever bro like, you better watch it you know like, and it was scary you know like I’m real sorry and so for that reason when I went through now I have a white cane like you’d see it traditionally a blind person, low vision person using on the street. I went through cane training in case anything got worse with my vision because now half of my vision is missing. If anything happens to the good half. I’m in real trouble.

    Derek 1:07:55

    So I got came training in early in case anything like that happens, you know if the good part of my vision starts to go, then I’ve already got the training. But they recommended that I always bring my white cane with me just so people recognize that I have an impairment, you know, and that there may be a reason that I am running into things or that I accidentally bumped into you on the subway.

    Bill 1:08:25

    I’m not looking for a man.

    Bill 1:08:27

    Yeah, you know. And that’s been interesting to do that too. You know, sometimes I do. I don’t bring it with me. I bring it with me everywhere. Pretty much I always kind of have a backpack with me with stuff like that in it. And in case I get into a situation where, but it’s usually when I go to like an event where there’s going to be a lot of people like a concert or something.

    It took a long time to be ready


    Bill 1:08:51
    Tell me, Derek, why did it take you a year to get back in touch with me and say, I think I’m ready.

    Bill 1:09:00

    Are you offended?

    Bill 1:09:03

    Not at all. But I’m curious to know because I think a lot of other stroke survivors need to hear. Maybe, they need to hear maybe they don’t if you don’t want to share, that’s fine. But I think they just need to feel okay that things take time. And when we get there, we finally get there. Then that’s okay. Because stroke survivors put timelines and pressure on themselves to achieve things. And when they don’t achieve those things by the timeline, they feel bad about it, So I’m just curious about what your reason was, and it doesn’t matter what it was to me.

    Bill 1:09:44

    Well, there are several things and I think one of them just has to do with the nature of having a community online like this because this happened to me so early on so long ago. Before all this existed, it was still kind of foreign to me, and the idea, and I only in the past, what three or four years even really got in touch with anybody online about any of this and started trying to connect with people about it outside of the people I’d met in person. And I start I was one of the things that I started doing was rock climbing. So I started doing I joined an adaptive rock climbing group in LA.

    Derek 1:10:33

    Amazing group of people. I never thought I would rock climb again with one hand and then I started searching, you know, and found some people on YouTube that you know, like we’re born without an arm, you know, and were rock climbing. Just amazing. The one girl Her name is Shawna and she’s is in Ireland I think. Forgive me if I’m wrong, Scotland maybe. Anyway, she’s amazing.

    Derek 1:11:03

    She was born without one of her arms. And she’s just the most amazing rock climber. And I was like, if she can do it, I guess I can too. You know, I used to climb when I was younger when my brother worked at a rock climbing gym, and so I used to go annoy him at the rock climbing gym. And, you know, I’d always thought, as I got older, I’d love to be able to do that, but I never thought I would be able to. And so when I saw that she was doing that I went to a local gym.

    Derek 1:11:35

    Shout out to Rockreation, they’re in Los Angeles. I went and I said, Hey, I don’t know if I could ever do this. But I saw a girl doing it online. And I’d like to try. And I said, Sure. We’ll help you try. And I tried. And it was incredibly difficult. But they said, hey, there’s a guy that works here. And He’s, uh, had one of his legs amputated. And he’s an amazing climber and he works here and he wanted to put together a group for adaptive climbing.

    Derek 1:12:16

    You should talk to him if you want, you know, like, maybe he can help you with some of this. And his name’s Jake Sanchez. I think his Instagram is Jake, assembly required Laurila entity. And he’s just amazing. Put together a group of adaptive climbing out of that gym there are people of all different kinds of disabilities and ages and from all different walks of life, and I started climbing with those guys and we were trying to grow the group, you know, spread awareness about that.

    Derek 1:12:55

    This group exists and where there’s a will there’s a way to get you on a climbing wall. You know, and so I started posting some videos on Instagram of myself doing it so that I could show people this is possible. And we’d love to have you come join the group because a lot of people just don’t know that the groups like that exist.

    Derek 1:13:17

    And that’s one of the problems like you mentioned about isolation and feeling like if you don’t put yourself out there, people don’t know. And so I wanted the group to be able to grow and so I started posting some videos of myself climbing, you can find them on my Instagram, which is at DVO photo. They’re pretty far back there now, but because I haven’t climbed in a bit, people started responding to those and I’m like, wow, like I guess there’s you know, interest and that was kind of like my first taste of like putting myself out there as a stroke survivor and you know, sharing a bit about what happened in showing, you know, how I move and you know what, my situation is and trying to, you know, get people that might not be aware that that’s something that could they could maybe do to be able to try.

    Bill 1:14:16

    So it was a little bit confronting for you to put yourself out there like that?

    Bill 1:14:21

    Yeah, it’s not something I’m super comfortable with, like being the center of attention, or, you know, I mean, any of this, like talking about this stuff, like on-one with people or even in groups, you know, I’ve spoken to a few groups, small groups of people about this kind of stuff, like, I’m pretty comfortable with, I guess, the idea of on the internet forever, it’s just weird to me. You know, like, oh, man, how am I gonna feel about this in 10 years, you know.

    Bill 1:14:51

    We’re not doing anything that you’re gonna regret. I’m not gonna see you naked. There’s no challenge where you have to show me your butt cheek or anything like that.

    Derek 1:15:00

    Okay, I was just going to do that anyway. But no, and then I contacted you because I’d seen your, you know, your videos, and I was watching and listening and enjoyed and thought what you’re doing is great and just like, what a great cause, you know, to just to be able to share stories and I’ve never really kind of gotten involved in anything like that.

    Derek 1:15:29

    And so, at the time, when I messaged you, I thought I should do that, you know, like, I should try and just, it’s uncomfortable. And I was at a time where I was I was climbing because it was uncomfortable and it was challenging and it’s just kind of leaning into like I just want to push myself to do things that aren’t so comfortable.

    Bill 1:15:49

    I love it when you said that. You started to explore the possibility of doing uncomfortable things. I mean, that’s what stroke survivors need to do they need to do things because that’s where the juice comes back into your life.

    Bill 1:16:09

    Yeah, I took singing lessons just because I wanted to do something creative. I have a background and visual arts and computer programming and nice thing I always wanted to do something musical but playing instruments one-handed is a different exploration. Yeah, so I thought maybe I’ll try it with my voice and I just did it because it was so uncomfortable.

    Bill 1:16:32

    Awesome. I just had a look at Jake’s website. It is not a website Instagram. It is Jake_assemblyrequired.

    Bill 1:16:39

    Underscore Yeah,

    Bill 1:16:42

    Yeah. And he’s got he’s got a little quote there that it says that I’m not sure whose it is. It says I hate being bipolar. It’s awesome. I love his attitude and the way that he goes about it.

    Bill 1:17:00

    Oh man, he’s an adaptive shaman to me like just the way that in his story and how he’s persevered and what he’s doing in the community to try and help people and encourage and grow and find strings and like I haven’t been able to climb with them for a long time that’s the other reason that I waited so long was that I got ended up getting injured as well on my right side.

    Derek suffered from an injury

    Derek 1:17:30

    So it’s kind of a long story but I ride the metro here in Los Angeles and I ended up kind of getting caught in the doors of the train and noticed like my I can’t often is just out you can see that but the doors you know, they close like elevator doors on the train, and I ended up getting my right side stuck in the doors.

    Derek 1:17:59

    And The doors on that train didn’t have the safety mechanism installed to reopen if something gets stuck in them so apparently the trains or programs when they don’t have the safety mechanism installed to just close harder instead of opening back and so I had my whole right side from my you know, shoulder to my knee stuck in the door and it was just closing on my right side is the most immense amount of pressure I’ve ever felt in my life it hurt incredibly bad.

    Bill 1:18:35

    And that sense has put me in a state of chronic pain just on my right side too. So now not only is my left side still partially nonfunctional. Now my right side is in a state of chronic pain, kind of all day every day. My shoulder, elbow hands half my hand are numb and so as somebody whose left side is mostly nonfunctional, I rely on my right side for like so much. And I’ve learned to do so much with one hand and one leg and my right arm and right leg are extremely strong compared to my left and now it’s nothing but extreme amounts of pain and, all that.

    Derek 1:19:26

    I wanted to work through that before as well. I was hoping I would get better quickly. And it turns out it’s not gotten better at all really, over the last year. And so that for that reason, I haven’t been able to climb because I rely so much on my right side for climbing and, I’ve just kind of been in treatment in occupational and physical and cognitive psychological therapy for the last year to try and get my right side better. has been a miserable experience. And I didn’t want to, you know, like, after it happened, it happened in March of last year, so just about a year ago. And I messaged you, I think right after that,

    Bill 1:20:21

    Yeah. Because I was feeling like I’m gonna get through this, you know, and I’m gonna be fine and my doctors were like really pushing you know, like it, you’ll probably be a month or two you should be fine. And then I’d be ready and then it just slowly has never gotten any better and it’s been miserable and I guess just now passing the year mark. I was like, this is just kind of a new normal for me now. Like, I think you had two recent episodes with younger stroke survivors as well that I listened to.

    Derek 1:20:56

    And I remember you mentioning on one of them that you felt like It was important to get, you know, to hear from younger people that this happened because it is happening to a lot of young people out there. You don’t hear about it a lot. But you know, like I mentioned that, young child that I met with his parents, like he was like nine or 10 years old, you know.

    Derek 1:21:18

    I’ve seen some Instagram accounts that parents have made for their younger kids who are going through this just to show their progress and be able to reach out to some of them and say, would it be helpful if I made a video that showed how I do it as somebody older that has, you know, been through it but happened when they were about that age? And just hearing from you that, you know, you felt like it was an important thing to be able to share? I, I felt like, well, maybe I could do that. Now. I don’t know.

    Bill 1:21:47

    That’s awesome that you did and look, stroke survivors go through a lot. And often you hear from stroke survivors who experienced another injury or another trauma and it’s a bigger issue for them because of the effect of the other issues that they’re facing and the last thing they need is to have an additional issue. Yeah. And I get it, you know. So I’m glad that you’ve done that. And look, what I want to say to you is, you’ve been brave in your whole recovery. And I hope that this new version of you going forward and putting yourself out there is going to offer you a lot emotionally.

    Putting yourself out there after a stroke


    Bill 1:22:22
    And I think that if you go down that path, emotionally, you’ll get a lot of responses. And you’ll start to feel better physically. And I got a lot out of being emotionally what’s the word like prepared to be emotionally challenged by my situation, and the more I did that, the more I let go of pain and suffering, the mental pain and suffering and I was able to see that on the other side of holding up my emotions back.

    Bill 1:22:57

    On the other side of that was a relief and then the relief becomes physical relief as well. And I’m not saying that that’s going to make your pain go away, it’ll probably ease it because it’ll give you another avenue of relief like you won’t, you won’t be experiencing this emotional challenge. And then the physical challenge, and then that won’t be combined anymore. It’ll be released. And then you’ll be able to just focus on where the actual issues are.

    Bill 1:23:29

    And whether the pain or the suffering lies you’ll be able to pinpoint better, the kind of work that you need to do to help release that as well, you know, down the track. So, Eric Henwood was 18 or 19 when he fell, and there’s a bleed in the brain, so similar age to you. And, you know, he’s done a tough, and as a result of what he’s learned he’s been able to grow and become a bit of a version of himself.

    Bill 1:24:01

    And a lot of stroke survivors say that, but it doesn’t happen. And I’m telling you this so that you can hear about it so that other people can hear it as well or listen. It doesn’t happen by staying isolated staying in your shell, not reaching out to other people by not sharing your experience. And by not talking about it, it happens when all those things are happening, because that’s how you do self-healing. That’s how you do self-release.

    Bill 1:24:32

    And that’s how you do all these things. And you take control of your experience instead of waiting for somebody else to fix you and somebody else to have the problem solved and somebody else to have the solution. All those therapists are great. Absolutely. And they’re important and they’re necessary. But when you go in and you allow yourself to be vulnerable and you allow yourself to express your challenges and your pain and your suffering and your anguish then you’re releasing that.

    Bill 1:25:03

    And it’s not being a burden on other people. It’s just, you’re releasing it. Most people don’t know how to take that information on and be burdened by it. They don’t even know how to help. So just sharing it, like you do in short amounts or in a podcast or whatever, you’re gonna find that the more you do that, the more cathartic, those conversations will be.

    Bill 1:25:26

    Yeah, I’m not real sure what to do from here, you know, but I know that I’m, I’ve gotten to a point where I’m more open to the idea of putting something out there, like what we’re doing right now. I mean, I was going to ask you about your experience and just like, I mean, you just dove right in and were cool with it, and like, Whatever happens, happens, and I mean, I’m sure it’s been a journey for you just doing what you’re doing, you know, and a journey of being comfortable with it, and feeling like you’re doing it the way that you want and getting feedback and, all that, you know?

    Bill 1:26:07

    Yeah, I was really, concerned about doing anything that I’m doing right now. And I was concerned about what people would say, of course, I’d never had the experience of people saying that this is a great thing because I’ve never done it before. I never had growing up. I’ve only ever had the experience of people telling me that what I was doing was wrong, or was not right, or no one’s going to be interested in that.

    Bill 1:26:31

    So I was extremely apprehensive. I didn’t want to be wrong. I didn’t want to not do this. I didn’t want to do three episodes and not get to 100 episodes or more. And I was just becoming I just had to bite the bullet, so to speak, and do every step and then experience the discomfort in every step. And I remember, releasing the first episode and then doing three or four and then just getting shit scared again and then going, no one’s listening to this.

    Bill 1:27:03

    It’s a waste of time, you know, who cares? Like, I’m not gonna even bloody do anymore. And then what happened was, I met somebody online or something inspired me and I thought we should talk about that on my podcast. And what I realized was I was not doing it for other people. I was doing it for myself.

    Bill 1:27:21

    Because I didn’t have a community I wanted to reach out and learn from other people who would go through stroke. And I wanted to hear from them so I could grow so I could feel better about myself. So it was kind of selfish. But then, once I started to get the ball rolling, the selfishness turned into selflessness, and it started to make a difference to other people and they were telling me that it was making a difference.

    Reaching out to other stroke survivors

    Bill 1:27:47

    And then the fear and the pain of doing it just melted away when somebody like you contacts me and says, Man, I just needed to hear that episode or that episode inspired me to do something. That’s it. Nothing is stopping me now from making sure that I keep releasing podcast episodes so that other stroke survivors don’t go through such a hard time as I went through.

    Bill 1:28:14

    I don’t want them to do that. I want them to find us a lot earlier in their journey and be healed a lot earlier in their journey so that they can pass it forward to other people and heal them as well. And what I’ve done as a result of that is because I’ve met so many stroke survivors, I coach a few stroke survivors. And then that’s amazing because coaching people is not dealing with their mental health issues coaching them is not telling them how to fix things or what to do things.

    Bill 1:28:48

    It’s just to be there for them to have somebody’s back all the time. And just to help guide them to their next milestone. And that is something that I can do. And I don’t have to worry about all the other stuff that I had to worry about that I don’t have to worry about all the other stuff that I had to worry about. So one of the things I did do is I got coaches. Again, I did it for myself, I didn’t realize that they were going to benefit other people down the track.

    Bill 1:29:26

    So I got coached profusely, and I stopped seeing a counselor and a therapist who was telling me about who made me talk about my problems. I was rather focusing on solutions and goals and outcomes and getting there and overcoming the little obstacles that I needed to overcome to get there. And every time I achieved something, I looked back and I thought, wow, actually, I achieved that.

    Bill 1:29:50

    I didn’t have the guts to do that before the stroke when I could walk or didn’t have the guts to attend this course when I was healthy now on doing that, I’m feeling better about myself, you know, and I’m achieving these things, and I’m inspiring people, and I’m connecting with people that are like me. And for the first time, I feel like I fit somewhere.

    Bill 1:30:11

    And I’ve never felt that I’ve never felt that in my 37 years, I always felt that I didn’t fit. So it’s been a cool journey. And I had this awareness a little while ago, and I got really curious about it, you know, and I looked back and I said, Man stroke is one of the best things that ever happened to me. Some people lose their shit when they hear me say that, because how can that possibly be you know, and then I asked some time ago, I asked on Instagram, whether other people felt that way. And there were loads of them.

    Derek 1:30:48

    Yeah. I always say people ask me about it. I say it’s the worst thing that ever happened to me. It’s pretty tough. the thing to go through, you know, and everybody’s journey is different and every the struggle that, you know, everybody in the stroke survivor community face. Everybody’s kind of mixture of things that they deal with is it’s not all one-to-one, you know? And so, for me it yeah is terrible.

    Derek 1:31:23

    I wouldn’t wish it on anybody. Or I wouldn’t say yeah, you shouldn’t go have a stroke. Like you’ll get to have the best thing happen to you too like, I don’t want that like, but it’s something that I’m so grateful to have the experience of and to have learned and gotten perspective and like you mentioned, like there are things that you wouldn’t have done pre stroke that you’re totally up for now, as a challenge.

    Derek 1:31:48

    It’s changed the direction of my life completely. You know that that has happened. I think if it hadn’t happened, I’d still be living in Texas, you know, probably working at the same place and I never would have ventured out and gone see the world and rebuild my life and be independent again I might still be living in my parents house you know as a guy who never pushed himself physically and just kind of let my body go to waste and you know, that happens to a lot of people that go through this there’s a lot of people out there that are probably have seen your shows and watched all the videos on YouTube and seeing people on Instagram that they feel like it’s too late or you know, that they kind of let themselves just kind of have the stroke decimate their lives.

    Derek 1:32:41

    And they haven’t gotten out there and met other people and seen what other people can do and given a shot for themselves. And that’s what the rock climbing thing was about for me: I never knew that was a thing that could be done. I’m so glad that I looked it up and went to a gym and gave it a shot and it changed my life physically like with my body and, my physical fitness and wanting to get outside of just doing things in physical therapy and occupational therapy and do things with an actual group of people.

    Derek 1:33:10

    And something fun and not doctor-prescribed. You know, like it was something that other people look at is difficult to do as a quote-unquote, normie, you know, like, it’s difficult for people with fully functional bodies to do like so to go in there and do it with one arm and one leg and half your vision. You know, like, I would have never thought that I’d even attempt that, you know, but I found this group and if there’s something that I can do and say and put out there that inspires somebody that never thought that they could do it to go out there and do it, then hell I want to be able to do that.

    Derek 1:33:49

    You know, I had an Uber driver that was he’s how’s your day and I was like, oh, man, I’m tired and he’s like, Yeah, me too. and he pulled out his prosthetic, he had a prosthetic leg. And it was sitting in the passenger seat of his car, you know? So yeah, I’m having a pretty rough day too, you know, my leg’s killing me making a joke he’s an older guy, you know, probably in his 50s or 60s, maybe even probably late 50s Uber driver, and as we just started talking about, you know, he had been in a motorcycle accident and lost his leg.

    Derek 1:34:29

    And that’s, that’s what had happened to Jake. And so, I’m like, you know what I know a guy had that happen too you know, he’s a badass rock climber, like, have you ever tried rock climbing and he’s like, Oh, my wife would kill me if I tried to do that. You know, if I told her I was gonna go do that. Maybe I should. And I was able to, you know, connect them and I got his information and that if you want to go climbing like there, I know a guy that can put you on a wall. Like if you’re feeling You want to have a physical challenge there’s an older lady there that’s gone climbing at the gym and she’s probably 70s or something, you know, that just wanted to challenge herself, do some physical.

    Derek 1:34:32

    It’s not like they’re out there ripping it up, like competitively just you can get on the kiddie wall if you want, you know, and just to get active and get moving. And that’s one of the other things as a stroke survivor that you need to do, especially if you have mobility limitations is keep your body moving, you know, use it or lose it they say.

    Derek 1:35:20

    The more you’re keeping active, the better and so if there are people out there that have kind of found themselves feeling like it’s not worth it, there’s, you know, I’m too far gone, there’s nothing I can do or I wouldn’t be able to do that or there’s nobody to support me through that. A little research especially now goes a long way.

    Derek 1:35:55

    In typing in on hashtags on Instagram, a stroke survivor or adaptive athlete or adaptive sports or there are people doing everything adaptive archery, adaptive rowing, and like adaptive climbing adaptive cycling, there’s, I mean, where there’s a will there’s a way and it’s blown my mind the last few years that now I feel like if there’s something I want to try, I’m sure I can find a group of people that are also trying it, you know, and a lot of them are doing it well. You know, so that’s kind of where I’m at now, with having gotten back in touch with you and after being in my one-year post-second injury.

    Derek 1:36:43

    I’m just like, I just got to move forward. Everything’s extremely painful now and I you know, I have doctors that are helping me with pain with both like natural healing stuff with like, breathing techniques and you know, engaging the parasympathetic nervous system and that naturally and you know I have a doctor that’s given me some painkillers like gabapentin and ketamine and things of that nature that, you know, I’ve worked through for the last year to try and figure out what helps me not have a ton of pain sitting here as I have with you right now just sitting with my knee bent, like makes it feel like it’s going to explode, you know?

    Derek 1:37:26

    So I’ve had it kind of stretched out and I’m sitting in a movie theater with my knee bent. I can’t make it through Full Movie unless I have, you know, some kind of relief and I know that there are people that have shared stories about you know, and I went to a stroke, or chronic pain support group and people were talking, just sharing. Here was my experience with this medication and that medication and you should talk to your doctor about CBD or, you know, like, all these different things that if people aren’t putting themselves out there, you know, then it’s just like, it’s just like, I’m back where I was in 2002.

    Derek 1:38:04

    And this happened and none of this stuff even existed. So, um, it’s a great time for, you know, people who are going through it just now or just recently to find a way and find support, you know, I’m excited. It’s just gonna make people heal faster and, have a better community around them. So I want to be a part of it. I just still trying to figure out like, where do I fit? I guess.

    Bill 1:38:32

    Yeah, you’ll find your place man. Just give it time. We’ve come to the end of the podcast episode. If people want to get in touch with you, what’s the best way for them to reach out to you?

    Derek 1:38:46

    I’m not sure. I guess. I haven’t been as active on Instagram since I got injured a year ago. That’s probably generally the best place and I’ve thought about creating a separate one. Just stroke-related, because my climbing videos and all that stuff got kind of pushed down by pictures of my cats. But, probably still Instagram. My thing there is @dvophoto, like my initials Derek Van Oss.

    Derek 1:39:24

    I have a background in photography, which is another weird part of my story. Being a half-blind, one-handed photographer, I’ve done a lot of work in the photography world as well. And, like, that’s something that people I don’t, you know, very rarely met very few people that have ever had the visual field cut like I do, but I’ve read about people online and forums and stuff and discussing it, and how debilitating it is.

    Derek 1:39:48

    I’ve been able to show that I was still able to work at a professional level as a photographer with half of my vision is kind of weird. To me, it makes me a better photographer. And then also driving, I can drive now I’m legally licensed. And that’s something that most people with the visual field cut is the most scary thing is that they get told that they’ll never be able to drive again.

    Derek 1:40:13

    And I was able to make it happen. And I and I don’t think that that’s very common and I think it’s something that is very suppressed in the medical community that I, you know, I was told I’d never drive again and I have a license, you know, like, and I think that it’s something that doctors kind of, because it’s so unsure and it can be you could hurt someone or hurt yourself doing it wrong.

    Derek 1:40:39

    Doctors are quick to say you’ll never drive again. And then it just discourages people that have had this kind of visual impairment happen, but I can be a living testament to saying it’s possible, you know like I have half of my vision in both eyes and I’m legally licensed in the state of California. I don’t have a car Right now anymore, um, but I just use the metro, but I want to drive I want to rent a car if I want to whatever, right? I’m licensed.

    Derek 1:41:08

    You can do it, you know, I mean, you gotta be safe, and you got to do it the right way. And that’s something that I’d love to if there was somebody out there if they wanted to get in touch with me about like, how did you go about being able to drive again? Like this? What are the steps you went through? And is it possible and how I’d love to show them how to do it or, you know, like, if they’re in California, I could go to them. Like, because I also do it with one hand and a bad leg. You know, so it’s, it’s not just my vision is gone. I you know, there’s a lot of it’s complex. For somebody that’s done it. I’d be happy to be that kind of a person for somebody if they’re out there.

    Bill 1:41:53

    Awesome, man. Look, I appreciate you coming on the podcast. Thank you so much for your time. Thanks for finding the courage to reach out. And I wish you well and as your T-shirt says, stay inspired.

    Bill 1:42:08

    Yeah, that’s a good one right is a company called Into the AM. They have these shirts and this is one of my favorites when I want to go do a workout or whatever keeps me motivated. It’s also kind of perfect timing, considering we’re all stuck inside and we’re all conferencing with people and supposed to be distance. This felt like a good time as well. But if I was going to sit and talk with somebody, this would be the way to do it. So now I can feel like I’m primed and ready to call like 10 people after this, to be able to say that I feel comfortable being on a video conference.

    Bill 1:42:50

    Good man. I’m glad to hear it. Derek, thank you so much for being on the podcast

    Derek 1:42:55

    Thank you for doing what you’re doing and putting all this out there and want to help people because Like with the virus going around we got to get through all this together and I think the same with the stroke support we got to get through this together it’s a small group of people going through all this that have experienced anything remotely like what other you know you’re you might be experiencing out there so what you’re putting together and doing I think is amazing and I’m honored to be able to be a part of it you know, like keep at it and looking forward to the next episodes.

    Intro 1:43:34

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post Time To Talk About Stroke – Derek Van Oss appeared first on Recovery After Stroke.

    1 hr 44 min
  • How To Reignite Your Passion – Brigette Sigley

    Brigette Sigley was juggling a successful business and family, and being busy led to her missing the warning signs that eventually led to a brain tumor and then breast cancer.

    Website: BrigetteSigley.com

    Highlights:

    01:00 Introduction

    04:05 Brigette Sigley had two major health challenges
    08:49 The Symptoms
    13:24 Brigette’s three types of Superwomen
    19:12 Self-expectations
    22:38 Brigette found out she has breast cancer
    28:49 The life-changing decision
    36:00 Brigette heard a voice
    44:09 Bill’s experience
    55:35 Letting go of control

    Transcript:

    Brigette 0:00

    All of a sudden I felt this pea-sized lump underneath my left arm. And although the water was hot, I liked it, I suddenly felt this cold inside of me like, I just knew that something wasn’t quite right. And I find myself in front of the breast surgeon and she’s telling me that I had grade three breast cancer and it’s in all my lymph nodes.

    Brigette 0:34

    But then old Brigette shows up again and she says, okay, but how quickly can you fix me? I like I’ve got this company to run and three kids and this just doesn’t suit me. I mean, how often do we do that? We just want a quick fix, right?

    Intro 0:51

    This is recovery after stroke with Bill Gasiamis, helping you go from where you are to where you’d rather be.

    Introduction


    Bill 0:59
    This is Episode 94 and my guest today is Brigette signally. In the past, Brigette was the ultimate Superwoman juggling a successful business and a family. However, like many of us, she didn’t see the warning signs that eventually led to a brain tumor and then breast cancer. 10 years ago, Bridget went on a transformational journey that began with overcoming her health challenges and later finding her purpose and training to become an integrated health coach out of the Institute of Integrative Nutrition in New York.

    Bill 1:32

    Brigette’s passion is inspiring women to get off the hamster wheel and reignite their lives so they can experience more peace and fulfillment and avoid stress-related health crises like the one she went through.

    Bill 1:46

    Now just before we get started, I wanted to let you know that you can download all the words of this episode as a PDF. It’s perfect for you if you prefer to read and take notes or highlight different parts of the interview for future reference. It’s a great way to learn and it helps retain new information to memory. Just go to recovery after stroke calm, and click on the image of the episode you’ve just listened to. At the very beginning of the page, you will see a button that says Download transcript.

    Bill 2:16

    Click the button, enter your email address and the PDF will begin downloading. Also, if you love the Recovery after Stroke podcast, and you think that it is helpful to other stroke survivors, please share it with your communities and tell others about the podcast so that they may benefit too. If you are watching on YouTube, please give us a thumbs up and leave a comment.

    Bill 2:39

    I’d love to hear from you and other stroke survivors. And I answer all comments personally. Go to iTunes, or your favorite podcast app and leave a five-star review. Finally, if you think you make a great guest and have an inspiring stroke recovery story to share with our community. please get in touch Just send an email to [email protected] and I’ll make it happen. Now it’s on with the show.

    Bill 3:09

    Brigette SigleyWelcome to the podcast.

    Brigette 3:12

    Thanks, Bill. Thank you. You know, we’ve known each other for a long time, haven’t we? And so thank you so much for having me back, I guess.

    Bill 3:21

    Yeah, it’s been a while you were one of the very first few people that I interviewed on the podcast, and I think that was nearly four years ago, something like that. So it’s really good to catch up with you again, although we catch up regularly out of podcasts, you know, not in the podcast world we catch up in person

    Brigette 3:41

    We do we do.

    Bill 3:43

    So just to remind people who may have not listened to the early episodes. Of The Recovery after Stroke podcast. Can you tell us a little bit about what happened to you?

    Brigette Sigley had two major health challenges


    Brigette 4:05
    Sure. So 10 years ago now, I had two major health challenges. And when I was 35, I was diagnosed with a brain tumor at the base of my C two. And then five years later, I was diagnosed with breast cancer, grade three breast cancer, and it was in all my lymph nodes because those things sent me on this journey to understand what was causing my body to go into these health challenges, and then basically how can I stay alive to you know, to be there for my family, and see my kids grow up. So I went on a journey. And here I am 10 years later.

    Bill 5:05

    Yeah, it’s so good that you’re here. I mean, we met, I’m pretty sure we met something around about five or six years ago at a public speaking, gathering. And you were there for the same reason I was it was to learn how to get in front of people and share the message so that we can support people in their recovery.

    Bill 5:27

    And be kind of a guide to them so that they don’t have to go through things the way that we went through things and as badly or as dramatically, or I don’t know what the term is, right? But at the time you were a mum, yeah. And a wife and a businesslady. Tell me about family life and the things that you used to do daily before the universe told you you couldn’t do these things anymore for now.

    Brigette 5:55

    Yeah. So, my life used to be one of, I was busy all the time on the go all the time. So I was running a business in the city. I had three small kids. You know, every moment was Go, go, go, go go. And, I felt this incredible responsibility for both my business and my family. What I didn’t know at the time was that my actual stress hormones were turned on all the time because I never stopped.

    Brigette 6:40

    So, I would go go go and then you know and even to do that I would wake up in the morning, I would take a Berocca to get me going. I go and do some exercise. And you know, I’d go off to work by about three o’clock. I’d need a bit of sugar to give me a boost and a coffee. And then at night, I get home and I’d wind down with wine at night.

    Brigette 7:09

    And I do the same cycle every day. And I also felt this overwhelming responsibility that you know, we had these kids, but my job just didn’t end when I got home, it was like, Okay, well, what are we eating for the next week? I was so much more capable of I felt I was so much more capable of doing things. So I would just run around and do everything at home as well.

    Brigette 7:37

    So this is how I live my life. And a lot of people, friends would go oh my god, you know, you’re like, Superwoman, you just can do all these things and like, deep down, I made me feel like prepped to you know, I can just get all this stuff done. And I just used To think that everything would be alright I just create more time I just do things for longer.

    Brigette 8:08

    But little did I know that it was having this effect on my body. And I refer to that term Superwoman. These days, I coach a lot of women who were very, very similar to me or similar back then and how I was. And so it got to this point, and I guess, you know, maybe if I just share Bill, a couple of my turning points, you know because there were messages along the way. And you talked about the universe. There were messages along the way that I was ignoring.

    The Symptoms

    Brigette 8:49

    And the first thing that happened was, I just had my first child, and I had a profitable business, and you know, everything was going well. I was running my business. I have my child managing that. But I had this crazy, crazy, incredible pain in my neck to the point that I know that this sounds ludicrous to anyone else, but I used to be popping Voltaren, like regularly every day, that’s an anti-inflammatory yes, and I’d be popping these pills daily.

    Brigette 9:31

    And I need to go for a run at four in the morning like, just to get my neck moving, so it would be pitch black. And just so that I could move my neck so I could look down at my, you know, Zack was only six months old. I find myself off having an MRI.

    Brigette 9:53

    And, you know, Bill that something’s wrong. When the doctor calls you. How often do they call you after you, very rarely? So, I had my MRI, and then the doctor on the phone as I was leaving the carpark and he said, Can you pull over and buy blood thinning tablets? And, the next morning, you know, I find myself in front of Professor Kaye, who is a neurosurgeon.

    Brigette 10:26

    He tells me that I have this brain tumor, the size of a golf ball on the base of the top of my neck face of my brain. And the thing that came out of my lips was, how quickly can you fix me, you know, I’ve got stuff to do. I’ve got this business to run. I’ve got my child, to, you know to look after. They give a 60% 40% chance of being able to walk again in that, and I’m just devastated.

    Brigette 11:09

    I remember actually. So I was 35 at the time. And I remember sitting there and writing my will out on this little scrap of paper the night before. They do the operation, and he says you know, I want you to rest for, you know, for weeks, and I think I can do this in two weeks. And it was like I put my, like, throttle down and I was back out there doing my invoicing.

    Brigette 11:42

    And, and, you know, and it was just the way that I looked at life was that life was about doing as much as possible and at all times, and I didn’t know any different. So there was that warning sign then that hey, something’s not right. And my body was trying to give me a message. But I wasn’t listening.

    Bill 12:07

    That was a message and a half Bridge and stroke survivors will relate to this, let me tell you because I was similar. I had the first bleed in my head, and I ignored it. Seven days. And then the doctor told to me go home for six weeks and do nothing. And of course, you know, I did as much as I could in those six weeks because I had a business to run as well.

    Bill 12:28

    And I had guys running around and I was doing quotes and I was doing all sorts of things, you know, many stroke survivors will relate to this and I know, with women, and my experience with my wife is that there’s, really a time with her. She’ll say, no, I can’t do that. Or I’m not I’m too busy or I haven’t got time for you or whatever.

    Bill 12:50

    It’s very rarely that she’ll say, I need to do something for myself or if one of the kids butt in or interferes at that time, or I do, and I’m not being aware that she’s had a massive day or she’s really tired and I need to give her time and space to herself if I’m not aware, and I also butt in and I say something, she would just drop everything that she was about to do for herself and she’ll just get on to the task to make you better, feel better, happier, whatever. Do you relate to that as well?

    Brigette’s three types of Superwomen

    Brigette 13:24

    Yeah, yeah. You know, so these days Bill, I work with women that I call Reforming Super Women, and there’s three types of Superwoman. So the first type is Miss Perfecto. So Miss Perfecto feels like no one can do anything as well as they can. Whether it be it’s just quicker at work if I do it, because I know how to do it or at home, no one vacuums or wipes the benches quite like I do, or mop so I’m just gonna do it.

    Brigette 14:07

    But then they’re left feeling frustrated and angry and empty because they have no time you know, which is all kind of going on in their body. The second type of superwoman is what I call Mother Teresa, Mother Teresa, maybe this is a bit like your wife’s Bill in that they wants to help everybody else and be there for everybody else.

    Brigette 14:39

    They want everybody else to be happy and to live the best lives that they can. So that they will do anything to make that happen for other people and they get a lot of joy out of doing that. But consequently, they put themselves at the very bottom of the piles so often they’re left empty and exhausted.

    Brigette 15:06

    And then the last one is Miss indispensable, so Miss indispensable knows, you know, everybody rings her, like, if the children can’t find their socks, then they ring or if they’ve lost something, they ring and work or ring and say, you know, how do you do this or that or, and they love it because you know that they’re the source of this information and all this power and it kind of gives them adrenaline because, you know, I think later on we’ll discuss the science too, but they get this power trip out of doing it and inside of them, it’s energetically lifting them with adrenaline, and so they get used to that sort of addiction.

    Brigette 15:56

    And that was probably me, Miss Indispensable. I kind of loved being needed. I loved the fact that everybody would come to me, you know, and I could rattle off. You know, how many people find me today and all the stuff that I kind of got done?

    Bill 16:13

    Did you like that as a kid? Does it creep up on you? Is it something that you always had within you? How did you get to that point where at 35 you were this person? And then, and then there was also something else tied to it. So maybe it was partly, and you can tell me, I’m just, I’m just guessing, but maybe it was partly your upbringing or the way that you were as a kid. But then also there was money associated with it as well, because then at work, you got to reward for what you were doing. It wasn’t just personal praise. It was also those you know, dollars associated with it.

    Brigette 16:50

    Yeah, I think I think for women these days, it’s very challenging. You know. We’re taught that we can have it all and I am going to show you how you can have life balance, and you can and everything flows more easily and I’ll finish my story with that as soon but I think we’re brought up in a society where perhaps our mothers that they were at home and that they ran the perfect house and they put food on the table and we had all these varieties of meals.

    Brigette 17:32

    So we saw that right? So in my case, I grew up with that and my mom worked part-time. But then, you know, I was told, I could do anything and have this fabulous career and then children came along and, and it was like, oh well, this part inside of me that says I want to be this nurturing mother and feel responsible for these children, and husbands and stuff, so I’ve just got to find a way to do it all, no one teaches us, you know how, how we say no or with grace or how we ask for help at times, and how we can do some action in a much more easy way, not from a kind of frustrated vibrational place. So, they’re the things that we deal with in this modern world as a woman.

    Bill 18:36

    So you get sucked into the narrative and both of them, okay, when I say something, I’m not saying it negatively, but you get sucked into the narrative of this is how I’ve grown up and this is how I see a mom’s role in a home because of my example with my mum, and you also then get sucked in with the movement that’s about empowering women to be employed and employable, and successful business people and all that type of thing.

    Self-expectations


    Bill 19:12
    And then somehow you forgot perhaps that there was maybe supposed to be 80% of 1 20% of the other or 40 60 or something like that. And you try to do 100% of 1 and 100% of the other. And that’s way too much expectation on yourself. And of course, were you successful in both of those areas where you were successful at being the type of mum and wife that you want to be as well as the type of business person you wanted to be? Did you find one was lacking? Or were you doing both of them well?

    Brigette 19:52

    So I felt that my business had grown and I had these kids, but I felt like I was failing at both because I felt so guilty when I was with the kids. Because I, you know, I had this business and we often there be issues that would come up. And then and they’d say, Are you listening to me Mom and, you know, which you know, is a typical kid, but really, I was never really present.

    Brigette 20:25

    And then and then this responsibility that if I didn’t do that, what would happen with our mortgage? And so it was this constant thing of, I’ll put all of that off. And I’ll just make more time until my second you know, my big aha turnaround point. changed all of that, I guess.

    Bill 20:50

    Yeah. Well, that’s amazing. I, I relate to a lot of what you’re saying because I’m, you and I are very similar. Although I’m a male You’re a female. I do have all of these issues as well, a lot of men will relate to this. But I think men can do the work thing better than the women thing. And I’m not saying in the way that they succeed or how good they are at work in that we can leave our kids behind.

    Brigette 21:19

    Yeah. And I see and I would agree that men in general can focus on solely one task at a time. And yes, there are lots of jokes about that. But the reality is that we can just do that one thing at a time, and then think about what’s next. We create so much better outcomes. Yeah, can I share with you Bill, my next turnaround point because I guess that might help your listeners and your viewers to see where they’re at.

    Brigette 22:00

    So after 35, 1 one child, the way that I looked at that was life short that is for living. I’ve just got to get out there and do more, create more. And so the business got bigger. And then I had three kids. And I remember it I was turning 40 and it was this autumn morning and I just come back from training for this ultra-long triathlon.

    Brigette found out she had breast cancer


    Brigette 22:38
    Yeah, so there’s another thing that you know I added in their training for this and I hopped into the shower and I’m like scrubbing up. And then all of a sudden I felt this like-sized lump underneath my mind left arm and although the water was hot I suddenly felt this cold inside of me like, I just knew that something wasn’t quite right.

    Brigette 23:09

    And I find myself in front of the breast surgeon. And she’s telling me that I had grade three breast cancer and it’s in all my lymph nodes. But then old Brigette shows up again and she says, okay, but how quickly can you fix me? I like I’ve got this company to run and three kids and this just doesn’t suit me. I mean, how often do we do that? We just want a quick fix, right?

    Brigette 23:40

    So she says, No worries. You know, we can get you into chemo. We can start chemo this is serious. We can start chemo and so you know, six rounds of chemo and then two blood transfusions. I find myself back I’m sitting in front of her again. And I figure we’ve beaten this, you know, I’ve done everything that she said, I’ve even started I’d taken myself off to the goal cancer retreat for 10 days during that time because I kind of recognized that maybe I needed to do something.

    Brigette 24:22

    I’m sitting there ready to high-five her and she says Brigette, the treatment hasn’t worked. And the aggressive breast cancer has spread. And we’re going to now need to do Vasectomy and, reconstruction.

    Brigette 24:45

    And just at that moment, I felt so angry and so frustrated, because here was this very, Superwoman, needing to control all my outcomes, and suddenly I didn’t have an answer. And so I remember coming home and and going into my meditation room and I just surrendered and what I mean by that is I let go of all the thoughts about how and what I should do next.

    Brigette 25:23

    And I just surrendered and I asked if there’s a God out there what do I do? This gets woo-woo now just before my timer went off cuz I set a little timer just before the timer went off. I heard this big booming voice say don’t let them take your lymph nodes and it was like this male voice so my logical mind goes these chemo drugs speaking I’m going nuts. And I got rough and said I’ve just heard this big male booming voice and say don’t woo-woo with my lymph nodes. And he’s gone.

    Brigette 26:11

    So anyway, I’m on the trolley to go into theater, because it was all happening in the space of five days. And I’m just doing my deep breathing exercises with my eyes closed. And I hear that voice again. Don’t let them take your lymph nodes. So, I think that there’s something you know, like, my being my inner gut is saying there’s something in this, you know, I need to do something and so they open the theater doors and I want to say something and there’s like bright lights and there’s 20 people and I just, I can’t.

    Brigette 26:59

    I wake up after an eight-hour surgery, and they’ve taken my breasts and they’ve made a new one, but I’m bound up like a mummy and I’m feeling really sad and sorry for myself. And I’m in intensive care. And all of a sudden, I could hear this chirpy little girl’s voice, which was my daughter at the time, she was three, Audrey and my parents had brought her in to see me.

    Brigette 27:26

    And she says, and like inside, I’m like, really angry because I don’t want her to see me like this. After all, you know, I’d always been really brave and strong and, but she doesn’t see any of the tubes or anything. And little girls, you know, they just have this way of, not saying that and she just looks into my eyes and she said, did they take your boob?

    Brigette 27:56

    Did they make you a new one I just felt this overwhelming love for her and my family. And I knew deep down that I needed to find a new way to live and not just exist if I wanted to see her get married I needed to find a whole new way of living. So that was my catalyst. And an incredibly a couple of days later, I also had this, inner knowing that if I just was able to listen more to that voice, learn more about that, that I wouldn’t be able to you know, learn how to stay healthy and and to live right.

    The life-changing decision


    Brigette 28:49
    So I made that decision. So I had to be still in that hospital for a week and I made that decision that I was going to put my well-being first from that moment on, and I went on this journey, and incredibly, a couple of days later that the breast surgeon came in to say, you know, the next stages, we’re doing more chemo, we’re doing this and I just felt myself saying, no, I’m not having any more treatment.

    Brigette 29:19

    I know that it wasn’t in my lymph nodes. And she said, well, she said, the operation. We take a biopsy of all of the lymph nodes, you know, that we’ve removed. And then she came back in and guess what?

    Bill 29:37

    Wasn’t in there.

    Brigette 29:38

    It wasn’t in there at the time of the operation. So, for me having that moment of those brief little moments of being able to connect to that guidance, may want to understand more, and how it all works. So I went on this journey, right? To learn and, I guess what I learned, you know, like I learned, I learned, I guess a couple of things that may help your listeners here. But that it’s not our genes that cause disease so it’s not if we’ve got the cancer gene or the cardiac or stroke gene or whatever.

    Brigette 30:38

    It’s the expression of that gene. So what I mean by that is that it’s called epigenetics. And it’s the science of epigenetics. So, the expression of that gene means it’s the environment the genes are in so we choose to turn a gene on or off so we can up-regulate or down-regulate a gene, depending on our thoughts and our feelings.

    Brigette 31:05

    So, when I learned that I thought, well, if I’ve turned my cancer genes on, maybe I can turn them off, right? In this way. So I started to get excited. And then I started to study the work of Dr. Joe Dispenza. He talks about stress addiction, and how when we just go go go over time. And it’s like, what we’re doing is that we’re sending all our blood away from our organs, like our heart, and, all those major organs and we’re sending them out to extremities, like we’re running from a tiger.

    Brigette 31:52

    But there are a couple of things that happen when we do that we don’t make as good decisions when we do that. When it’s always turned on like that, and long term, what happens is that cortisol levels are rising, and it’s turned on constantly and we cause inflammation in the body and then it often leads to disease. So that’s when we’re turning our sympathetic nervous system on and I’m sure you’ve had, you know, many of your other guests talk about that, but it’s, then it was for me, okay, well, how do I that had become my normal and I didn’t know everything else felt quite uncomfortable, right?

    Brigette 32:35

    Being still felt uncomfortable. How do I then turn on my para-nervous system and kind of make that my normal? So 10 years down the track, you know, I went and studied Western medicine and as I just mentioned, the science and Eastern I went and studied with the Masters in India, I took myself off to India. I studied to become an integrated health coach out of New York and so 10 years later I want to say that I’m cancer-free and I’m probably the most healthy and vibrant you know I’ve ever been.

    Brigette 33:25

    And I also created a process to be able to help myself that I now coach others around and I know you had, you know, an old client of mine recently, didn’t you?

    Brigette 33:41

    Yeah I did, Clare.

    Brigette 33:44

    That talked all about it and I’ve been able to turn my whole life around so that my relationships are you asked me before about you know, What wasn’t working what was failing? And probably back then I didn’t know. But my relationships with my kids are so much stronger. Because I now have this whole new way of being able to operate.

    Intro 34:18

    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 recover? What things should I avoid in case I make matters worse? Doctors will explain things, but, because you’ve never had a stroke before, you probably don’t know what questions to ask.

    Intro 34:42

    If this is you, you may miss 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 35:01

    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 35:30

    Can you describe or tell me where in your body that voice came from? Or did it come from somewhere else? So I’m just curious about if you can pinpoint. Like, where that voice came from. And I know that you heard it like an external voice and it was booming and it was loud. But was it your unconscious? Do you think it was something within you? Can you elaborate on that a little bit?

    Brigette heard a voice

    Bill 36:00

    Why I think it’s important for you to try and elaborate on that, for my listeners a little bit is that perhaps they have heard a voice or some kind of guided message somewhere in the past and have not paid attention to it. Or it has been drowned out by something else. Are you able to shed some light?

    Brigette 36:22

    Yeah. And if I can do it from a place now, because obviously at that time, I didn’t know, right, and I just wanted to explore what was that voice. And what did that mean? So I’ll come from a place that is now 10 years down the track. So, from a science perspective, they now know that there’s a fifth dimension. So what does that mean? So a fifth dimension, it’s like, spirit and science are becoming much closer together so that they know that there is an energy and they call it the dark energy that controls and manages all things.

    Brigette 37:07

    So all things have a vibrational frequency and plants, animals, and everything have this and we interact with it. So, some in a spiritual world may call that consciousness, God, Budha. But there is a way that we can all interact with that. So how did that happen to me? How it happened was when you get quiet enough in that your thoughts and your feelings you let go of those because we’re always thinking thinking thinking.

    Brigette 37:47

    When you get quiet enough to be able to for a minute, stop thinking but also ask for help like one of the things is you need to ask. So at the moment, I asked and said, if there’s anything out there now I need your help. So I’d let go of my thoughts about what I thought should happen, I now need to do this, this to control this.

    Brigette 38:16

    And I want to give you another example here. So, one of my clients Leoni. She, when she came to me, she had these terrible, she had this back pain that she’d had for years and she was on she taken a cocktail that she’d had back surgery. But the reality for her was that she couldn’t stand for more than 15 minutes at a time.

    Brigette 38:46

    So we went through this, process of her and I call it the reignite process. But she was able to after four weeks, she could have whole days of no pain. Now a part of this is being able to reconnect and then be able to see a different future for yourself as well. But she had these freaky moments, through the meditations and stuff that I did with her where she could see herself above her body. Yeah, but there’s a way that when you open yourself up and you get quiet enough the right information comes to you to make life easier.

    Bill 39:46

    Does it come to your head? Where does it come from?

    Brigette 39:50

    Ah, okay, so when I coach people around how do they know? So let’s call it guidance. All right, guidance is kind of a nice safe word. How do they know if the guidance is real? Or if it’s your head talking? It’s a good question, right? So I say to them guidance comes when you have this just really strong knowing. And it’s it’s in your gut in your heart that this is right and it keeps coming back to you. Like someone knocking knock knock knock you know, you’re not paying attention.

    Brigette 40:30

    Come on, and it tells you again, you thinking, God, I wish that feeling had gone away. So think about a time with you where it’s been. And I can tell you on this journey of, you know coaching and speaking at times, I’ve wanted to give up but it’s like this strong No, no, no, you’ve got to keep going. And this is what you kind of you’re here to do. So it’s this really strong knowing the other thing it’s like where you wouldn’t have thought of it yourself.

    Brigette 41:06

    So it’s like something that comes to you that never. And I’m going to give you an out-there example because remember, I’m 10 years down the track. Now this is, this is a funny story, but I’ll tell you a really quick version. So recently, I’ve got three kids and my middle son now is 14. And he plays a very high level of soccer now he’d gone into this team and it was very exciting.

    Brigette 41:29

    And he got his kit, like, in a way kit, a home kit, with his name and all this sort of stuff. And they said, Don’t lose the kit, you know, it’s very important, you know, and he was very proud. That was the ceremony where he got the kit. So I come home and they play the first home game and then they have the training during the week.

    Brigette 41:47

    And he comes to me like at the end of the week and says Mom, I can’t find my home kit. You know, meaning what he wears on home day games. You know, so the stress hormones fall It was like start to come up and I’m gonna go where did you put it? And he says, well, I would I thought I’d put it in my bag and then my husband’s coming home going, Hey lost your kit, you know, like, so anyway, we go from the top to the bottom of the house looking for this and we couldn’t find it.

    Brigette 42:23

    So I thought I’ll just go into a meditation and I’ll ask, I’ll ask. So this is how you can use this guidance to I’ll ask so I just let go of all the thoughts and feelings you know, he’d only play one game so I didn’t know his team or whatever. And it came back that came this really strong image of this redhead boy and his kitbag, I said to McKenzie, is there a redhead boy in your team? He’s got your kit. So Mackenzie goes to the boy during training on Friday and says Mom said that God told her that you’ve got my kit. Oh my God, he didn’t.

    Bill 43:12

    Call the crazy van.

    Brigette 43:15

    So, the kid goes oh and you know, he looks through his bag and they don’t find the kit. However, we’re like four weeks down the track and they’d ordered a new kit and he got a new number and whatever, because of this Coronavirus, everyone’s been at home right here. And so they’ve been cleaning out cupboards we get an email from that boy’s mother.

    Brigette 43:37

    Saying they’d found Mackenzie’s, you know, number, you know, with his number and his name and his Yeah, his day kit. So what I’m saying is that when we can get quiet enough to be able to stop the thoughts for even brief periods and we practice this more, and I call it reconnecting that. It opens us up to a whole different way of living where life can become easier.

    Bill’s experience

    Bill 44:09

    I know it sounds woo-woo, but it’s not. And I asked you to tell me where you experienced it because I didn’t want to tell you where I experienced it first. So I sense that it’s not in the head. If you can calm the head down, then it helps it to come alive. And with my bleed in the brain and the two bleeds before surgery.

    Bill 44:33

    Three years later, my head switched off, like it went offline. And then all this stuff came up for me. And I didn’t have words around that I didn’t know how to explain it. I didn’t know what was happening. But as I did a little bit more reading and a little bit more understanding about messages and about the body and intuition and all that type of thing.

    Bill 44:55

    I realized that again, the head switching off was a big for me because I was always in my head, and allowing me to just focus my energy and connect to my body allowed for those things to come up and speak to me as well. And for me, they didn’t speak to me in a voice, they just spoke to me. They spoke to me with ideas in kind of like internal messages, that were not external that just sort of said, Go that path or follow that or get curious about that.

    Bill 45:27

    And as I did that, I learned more and more and I helped myself more and more. And then at that time, it was just happening more and more often because I was able to quiet my head down. And once you get good at it, the guidance is easy to tap into. And what I explain to people is, is that it’s just me, telling me exactly what I want to do. It’s just me, my heart telling me what my desires are and my gut telling me to confirm those desires. And then help me to take action in that space.

    Bill 46:03

    Right. And we know that the head is just about giving you creative ideas as to how to do what it is that you want to do in your life and what’s important and what you love. What we love is not in our head when I tell people you know, what do you love? They don’t go to their head to come up with the idea if they say, I think what I love is No, it’s too late. You’ve already gone to your head.

    Bill 46:26

    So if you want to know if you want to find out what you love, you got to go to your heart. You know, that’s where love happens. When you put your head on your heart and you ask your heart to tell you what’s the most important thing for me right now. And every time I did that when I was unwell, the most important thing was my family. Wasn’t it? It was making my relationships better. It was being a better version of myself and not hating myself.

    Bill 46:51

    It was letting go of all the stories I told myself about how busy I needed to be, you know because I was a superwoman as well. I had all of that stuff. on my shoulders, I’ve got to be. And my mum was probably one of the biggest influences in how our home was run. So I had to run my home At home like my mom, which of course clashed with the way that my wife ran her home because her mom had a different approach.

    Bill 47:20

    And then I also had to be like my dad, who was always at work and bringing home money and all that type of thing, right? So eventually, what I realized was that no matter how much money I had, if I died, my kids wouldn’t have a dad, and that money, although it would have been helpful for a little while, wouldn’t have been the thing that made a difference in their life, because would have been able to get jobs and have their own money.

    Bill 47:44

    So, I had to check in and get that feedback as well and find out what’s important. And sometimes that feedback also guided me to seek out the right doctor to stop saying a certain doctor. That feedback guided me to take a trip or not take a trip to do a course or not take a course. And it was amazing because for the first time in my life 37 years.

    Bill 48:11

    I had, I had a real way of not wasting time doing shit I didn’t love and things I didn’t love, that weren’t fulfilling that we’re just about adhering to somebody else’s ideal life or what I thought was a great life or what the Joneses were doing and all that kind of stuff, right. So I just love the fact that you had a similar experience, and I’m getting goosebumps now just thinking about our similarities.

    Brigette 48:37

    Yeah,

    Bill 48:38

    But thanks for sharing that. I appreciate it.

    Brigette 48:41

    Bill just there’s a quote that I remember one of my mentors is Dr. Joe Dispenza. He says that when we’re living by the hormones of stress, so when we’ve got that thinking brain going all the time, go, go go, we can’t receive the intuitive messages of the heart.

    Bill 48:59

    True yeah, that’s so true. I relate to that 100% and then when that went off, because there was a big blob of blood in my head, my brain just didn’t work and those other things came up. I remember having actual physical feelings in my heart and not realizing, and not being able to understand what I was feeling. What the hell is that? And at some point, I realized, Oh, that’s my heart. Like, I can feel it. It’s there. And I had never done that before. I had one used to beat and it kept me alive. But I never had this sensation before in my chest like it was bizarre.

    Brigette 49:38

    And yet a lot of people are in the same boat because we’ve learned we’ve been conditioned to live our lives in a certain way, haven’t we? And we’ve always done the same thing. So doing something else doesn’t feel normal and it feels odd and uncomfortable to begin with.

    Bill 49:59

    this And there’s a lot of negative talks, you know, around the place about what we just can’t do, or we just labeled as woo-woo. You know, but it’s not true. It’s stuff that has always been around. And it’s not that we’re saying that you should never take the advice of a doctor or I should you know, we’re not saying that if it wasn’t for doctors, you and I wouldn’t be around, you know, the medical system is amazing.

    Bill 50:22

    But there’s this other thing that we can fine-tune and add to help us along with the medical system that really can take us as people to the next level. And that’s what I feel like I’ve become this different version of myself that I’m proud of, not that I wasn’t before but, you know, eight years ago Bridge, no one could have said to me that you’re going to have a podcast with nearly 100 episodes that talk to stroke survivors every single week around the globe.

    Bill 50:51

    I would have thought that’s just the stupidest thing ever. And here we are. So I just love your story. Let’s just move along now. Tell me about what’s going on for you now what’s next?

    Brigette 51:08

    So for me at the moment, I have an upcoming course, that I’m running at the end of April. It’s an online course which is, which is quite fortunate for people at the moment, I think. And so, in terms of this course, it’s six weeks, and it’s directed at women. First of all, it’s about reconnecting. And so helping them to be able to get quiet so that they can hear those messages.

    Brigette 51:48

    And it’s also what happens from there as they kind of get clarity on what their body’s been telling them. You know why these things come up for them in that space and then in that part as well, we actually, I get them to be able to visualize a different future for themselves. Because, where you direct your thoughts and feelings, you attract more of that to you.

    Brigette 52:15

    So if you live in an overwhelmed land and frustrated land, then that’s what you attract towards you. So it’s being able to kind of direct your light to bring a different future. So there’s some work I do around how you do that and draw that future. So that’s in that part. And then the next part is being able to leap like most people don’t do anything until it’s causing a real pain in their life that they don’t change until the pain, right?

    Brigette 52:49

    So it’s getting some momentum to go if I don’t do this, then where will I end up? You know, what is going to be the ripple effect, and for some of my clients, it’s been they’ve known that their marriage is going to break down for others, you know that they’ve had a major health concern. And sometimes it’s been a stroke. Sometimes it’s been I’ve got one of my clients who has breast cancer, but she knew that the way she was living her life was she could feel it in her heart causing it.

    Brigette 53:24

    So it’s being able to say, all right, I’m ready to do that. And then the next part is rebalancing which is kind of all about looking at the areas of your life that are stressing you out. And maybe it’s like, work or relationships and being able to find a different way of looking at them. And finally, this is kind of the most fun part is reigniting you which is getting stuff in your life that you do just for you that brings you joy and helping people to make that a habit.

    Brigette 53:57

    So in this group together, it’s going to be an intimate group together, where we’re going to, I’m going to keep you accountable so that you go through and you can follow the processes. And you can action them and put these practices into your life and see where it takes you. And I’ve just had like, one of my clients recently she’s a younger woman who’s 32 with child and all those things going on feeling, responsible and never stopping but how it manifested in her body was that she ground her teeth to the point where she was breaking them off.

    Brigette 54:46

    You know, she had to wear these like brace things at night and she would break the braces because subconsciously, she would be worrying in her sleep and it’s amazing and so she was also meant to get married on Saturday. And so she was quite overwhelmed with all of that. And she’s in a place where we’re like four weeks down the track, and she’s stopped grinding your teeth, she’s been able to do that.

    Brigette 55:13

    And she’s like, so at peace with whatever happens with her ceremony that she knows that it will work out and how it’s meant to be. So there are, like, some amazing transformations that can happen if people want.

    Letting go of control

    Bill 55:35

    Yeah, it’s just about letting go of the control and just being kind of in flow with the environment and allowing things to just take their course. And that’s probably the easiest way to get to the end of the river is just go with the course just flow with the river, you know, let it take you, and be aware that there’s going to be some difficult paths along that path and there might be some dangerous parts.

    Bill 56:03

    But be prepared for those and allow yourself the opportunity to just see the result, which is that if she gets married, whether there’s a ceremony or not, if she gets married, whether there are people there or not, if she gets married, whether there’s a, you know, orange balloon or not like, it doesn’t matter, she’s still married, and she still made that commitment to her husband, and vice versa. So, in the end, you still have marriage, you’ve got to let go of all of the other stuff that doesn’t make a marriage.

    Brigette 56:40

    Yeah, that’s incredible, she kind of says that four weeks ago, she would have a bridezilla. You know, they had 120 people coming and all of this, but she’s in that time, as you say, got to the point where she can let go. So it’s kind of, you know, cool stuff. Yeah. So that’s coming up the other thing that I wanted to give people is that this is a gift for everybody.

    Brigette 57:09

    So if you have trouble saying no and maybe there’s a lot of you out there that don’t know how to say no to, you know to work or at home, and you want to be able to say no with more grace and kindness and guilt free, then I’ve got my saying no script, which is, you know, is a gift for everybody. And so if they just go across to my website, BrigetteSigley.com.

    Bill 57:46

    Bridge, thanks so much for being on the podcast. I appreciate it.

    Brigette 57:55

    Thank you so much for having me. I love and adore you so much. And it’s interesting how our lives have stayed alive, haven’t they?

    Bill 58:07

    Yeah, it’s been really fun. It’s been good to get to know you and to see how you’ve evolved and changed. And it’s good that somebody was going through similar things that I was going through in our evolution. And we’ve had a lot of similar moments, you know, so it’s good to be able to share that with somebody that understands. So yeah, thanks for everything that you do. I appreciate it and I’m glad to have you back on the podcast almost 80 or 90 episodes later.

    Brigette 58:39

    Yeah. And thank you so much it’s amazing and much-needed that you go all around the world with what you do.

    Bill 58:51

    Thanks, Brige. I hope that you enjoyed this episode with Brigette. She has been a friend of mine for about five years now. It has been amazing to watch her go from strength to strength, both in her recovery and how she goes about helping other women going through difficult times. If you’d like to check out the six-week online course Reignite You with Brigette Sigley go to BrigetteSigley.com and as a recovery after stroke podcast listener, you will get 10% off the full price of $495.

    Intro 59:31

    To discover how to support your recovery after a stroke go to recoveryafterstroke.com

    The post How To Reignite Your Passion – Brigette Sigley appeared first on Recovery After Stroke.

    1 hr
  • Caring For A Stroke Survivor – Jim Lanahan

    Jim Lanahan is an entertainment producer who traveled the world until his mother had an Ischemic stroke in January 2017.  Jim had since struggled to gain balance between his professional life, his well-being, and as a stroke carer.

    Facebook: www.facebook.com/IamJimLanahan

    Instagram: www.instagram.com/iamjimlanahan/

    Highlights:

    00:54 Introduction

    03:48 Using humor to deal with Ischemic stroke.
    11:18 It’s not always about the survivor
    20:00 Roll with the punches
    27:38 Memory struggle
    30:36 Dealing with life-changing situations
    41:35 Reluctant to receive care from other people
    47:15 Good things can come from tragedies

    Transcript:

    Bill 0:00

    How did your identity shift? And was that traumatic for you? Or did you find strategies to be able to shift into that space of being? Son/carer and organizer of all these things?

    Jim 0:16

    Yeah, it took my life and turned it upside down. To be honest. I am a producer, I produce live entertainment. So a lot of my work has been traveling around the world all the time. Right before my mom’s stroke the year leading up to that I had been around the world three times. Opening shows so the long and short of it is my mom had a stroke and everything just stopped.

    Intro 0:45

    This is recovery after stroke with Bill Gasiamis helping you go from where you are to where you’d rather be.

    Introduction


    Bill 0:54
    Bill from recoveryafterstroke.com. This is Episode 93 and my guest today is Jim Lanahan. Jim’s mom had an ischemic stroke three years ago. And it’s not only impacted her life but Jim’s life also. As her carer, Jim had to give up a lot and make sacrifices in his own life. And three years later, things are improving and some unexpected lessons have been learned.

    Bill 1:18

    Now just before we get started, I wanted to let you know that you can now download all the words of this episode as a PDF. It’s perfect if you prefer to read and take notes or highlight different parts of the interview for future reference. It’s a great way to learn and it helps retain new information to memory. Just go to recoveryafterstroke.com.

    Bill 1:39

    Click on the image of the episode you’ve just listened to. At the very beginning of the page, you will see a button that says Download transcript. Click the button, enter your email address and the PDF will begin downloading. Also, if you love the Recovery after Stroke podcast and you think it is helpful, please share it and tell others about the podcast.

    Bill 1:59

    So That they may benefit too. If you’re watching on YouTube, please give us a thumbs up and leave a comment. I’d love to hear from you and other stroke survivors. I always answer questions personally. Go to iTunes or your favorite podcast app and also leave a five-star review. Finally, if you think you would make a great guest and have an inspiring stroke recovery story to share with our community, please get in touch.

    Bill 2:26

    Just email me at [email protected] and I will make it happen. Also, please do follow me on Instagram. Just go to instagram.com/recoveryafterstroke and visit the Facebook page @facebook.com/recoveryafterstroke. Now it’s on with the show.

    Bill 2:46

    Jim, Lanahan Welcome to the podcast.

    Intro 2:49

    Hey, how’s it going?

    Bill 2:51

    Going very well. Look at us social distancing you from California. me in Melbourne, Australia.

    Jim 3:00

    It’s hilarious. Yeah. Well, we’re safe we’re more than six feet, right? So we’re good.

    Bill 3:06

    I could sneeze, and it wouldn’t make a difference to you at all.

    Jim 3:10

    That’s hilarious. That’s hilarious.

    Bill 3:13

    Thanks for being on the podcast, I came across your Instagram page, where I think you’ve got one of the funniest Instagram pages because you just talk about random stuff. And you just seem to do a brain download every once in a while. And you do it with such humor. But what got me was one time when you made a post about your mom, which was upsetting and made you emotional and you connected with me automatically. Can you tell me a little bit about what happened to your mom?

    Using humor to deal with Ischemic stroke


    Jim 3:48
    Yeah, thanks for the lovely feedback on my page. And I have used humor actually to deal with a lot of my mom’s issues. My mom had a massive stroke in January of 2017. She was living in upstate New York that’s just north of New York City. And I was in another part of the country. And I rushed home to be with her. It was an ischemic stroke, and it was kind of right above her right ear.

    Jim 4:20

    So that part of the brain affected her emotional capacity. Her ability to talk, and swallow, she lost her left arm, and it’s now paralyzed. She lost about 60% of her left leg. So she’s worked hard in the past three years, particularly in the first two years, she hustled. She learned how to walk again. The swallows back. Talking his back, she never stops talking.

    Jim 4:53

    And, you know, the mental emotional stuff. It’s a new version of my mom. It’s like my mom. 2.0 but she’s back enough where she can still get sassy with me and joke but she’s a little more, nicer, a little less sharp, a little less, you know, tart tongue, if you will. But yeah, that’s a long journey now. And she just celebrated three years back in January of this past year.

    Bill 5:25

    So, how old was your mum when the stroke happened? And what was she like before that? What was her daily routine?

    Jim 5:32

    Yeah, my mom was 68 years old. And you know, strokes happen to people of all ages, but it’s unusual when they’re younger. And so everyone kept saying to my mom, you’re too young to have had a stroke. You’re only 68 which I’ve now learned is not entirely true, of course, but at the time, um, it was heartbreaking because to your point my mom’s life was so active.

    Jim 6:02

    My mom was a retired registered nurse. She kind of ran the little town where I grew up. She still lived there. She ran the public library and was the chair of the board. She was the president of the women’s auxiliary program in the town. She just opened a new library in the neighboring town and my mom was like a shit kicker. You know, she got it done. She was so smart, so driven, she was raising therapy dogs on the side.

    Jim 6:35

    In so many ways, she was very much my hero, to be honest, because she’s such a good example of just a positive, hard-working citizen, you know, and after it changed everything, you know, within a year we had sold her house, we had to rehome her dogs. She was learning how to live basic life skills. Again, and she spent two weeks in acute rehab three months in subacute rehab.

    Jim 7:08

    Then she went to a nursing home continued outpatient rehab, moved in with me for three months, we moved across the country to Los Angeles. And now she lives in assisted living, where she gets therapeutic services inside and outside. But when you think about three years ago, my mom was kind of running this little town. And today, she, you know, woke up and couldn’t put together full sentences. It’s sad, of course, to see for me, but in terms of what’s in her head, she’ll just say to me, wow, I could never have seen my life turning out like this, you know?

    Bill 7:48

    Yeah, that’s one of the biggest issues stroke survivors face they face that dramatic change, that instant change, and then their identity gets impacted where all the a sudden, for, you know, speaking for myself, all of a sudden, I went from being a dad who worked and had a business and did all these things and labeled myself in all these ways to somebody who couldn’t do all those things. And therefore, I’m wondering, what new labels Am I going to give myself?

    Bill 8:22

    And do they comply? Or do they fit into how I view myself and how I like to act or participate in the world? Initially, people struggle with that because they think that their job the roles that they have, or the labels that they give themselves, is how people relate to them. And it is true in a way they do relate to you like that, but there’s no reason why you can’t shift and change and have another way that people can relate to you.

    Bill 8:59

    You can still have fulfillment. But getting to that place is usually the hard part because people don’t know how long it will take. They don’t know what they’ll be able to get back. They don’t know how it’s going to impact them financially and so on. So becomes a really big, dramatic thing. And I think if stroke survivors and carers alike are listening to this podcast and want to know what to do in the early days, just focus on solving the problems of the time.

    Bill 9:30

    What are the small problems that need to be solved daily when you look back at the end of the year, you’re able to say, Well, I solved all these problems, look at the things that we’ve been able to achieve. I’m curious, when you speak to your mom about her recovery, how is she dealing with the changes that have occurred in her life? And how does she talk about herself now that her voice is back?

    Jim 10:01

    Yeah, I have to tell you doing the small steps one day at a time I say it to myself every day. It’s such great advice, Bill. And it’s, and the other thing I’ve had to learn is that what you just said is 100% true from your point of view as a survivor, but in a very equal and, reciprocal way. I need to remember that I need to change my expectations of her. And that was so hard for me because it felt like I had lost my mom.

    Jim 10:36

    And I think the post that you’re reacting to was me outside of her facility just in tears, saying, Oh, my God, I miss my mom, you know, because this version, I often call her mom 2.0 it’s not the same mom I had before. So what you just said is so true. And I just wanted to echo that. Um, and I don’t mean to make it about me, but I The caregiver, gosh, so much if it’s about me, you know, and even though she’s in assisted living, I’m navigating a medical thing today. And I probably spent two hours taking care of that. And, you know, so it’s always about everybody, it’s about the survivor and the network, you know.

    It’s not always about the stroke survivor


    Bill 11:18
    Carers tend to, I’m going to generalize, but carers tend to make it all about the survivor. And that is a great thing. Imagine you’ve been going through a terrible time in your life, you’re going through something really difficult and you’ve got a carer who makes it all about you, my gosh, what an amazing thing. However, the carer needs to stop every once in a while and go hang on a second, but I have needs as well.

    Bill 11:50

    Those needs should be met, if they can be, and if they can’t be met all the time, every so often and the carer should be able to say you know what, I need time away from you. Not in a negative way. But I need time to myself I need time to do the things that I need to do. Unfortunately, what we’ve seen in Australia and I’m sure it’s a similar issue worldwide is carers tend to very many situations become sicker and more unwell and pass away way before the person that they’re caring for.

    Bill 12:23

    And that comes from this selflessness to just be around for the survivor and think that they need to put their lives on hold until this person gets better and they have a guilt association that comes along with that, that if they take some time for themselves, how could they possibly do that when this other person is doing it so much harder? Emotional distress is just as taxing as a physical issue.

    Bill 12:56

    And I remember being very conscious of the fact That my wife needed to be able to do her things, get her nails done, go out with her friends go on a night out with her friends and have some drinks, or do the things that made her recharge her batteries so she can feel like okay, now when it comes time to caring for me that she could still do that and didn’t feel like she was missing out.

    Bill 13:23

    Now, I was lucky because I was consciously aware of a level where a lot of stroke survivors are not. So what I want to say to you is that Mom is the most important person to you, but Jim has to be equally as important or just a smidgen beneath Mom’s needs.

    Jim 13:49

    It’s Yeah, you’re right. It was about two years after my mom’s stroke before I picked my head up and said and permitted myself to say, God, this sucks. And this is hard, and it’s not fair, and I have emotion about it. Because for the first two years, I just had blinders on. I just kept pushing through because she needed so much. And for the first year, we were living in different parts of the country, and it was so much logistical coordination.

    Jim 14:24

    But when we were both in the same place, and we were living together for a few months, I had that realization moment because it just came to a point right where I could not ignore it anymore. So what you said is true. And you asked me a question before and I talked about myself, but your question was, how is my mom acting now? And what does she think about this and you just touched on it again? And of course, you’re so smart about these things.

    Jim 14:54

    But it’s what you just said. My mom has the gift. of being a little removed from it. So it’s the blessing of a stroke, right? Like, when my mom was going through the worst of it, my mom was not aware of what was going on. And then she started to come back step by step. And I would see her pick up a little more, a little more, a little more. And as the caregiver, I would clue her in a little more. So major decisions I held off until about eight months after the stroke selling the house, because I didn’t want to do that when my mom was not aware of, of the, you know, the weight of that decision.

    Jim 15:40

    I wanted her to be a part of it. Re-homing the dogs, stuff like that. So, still today, my mom has the gift of just being able to and sometimes I wonder if it isn’t on purpose. She can just detach she kind of like has this thing she’s got a left side neglect. She comes looks into space on the left, and just doesn’t respond to me for about 30 seconds and it drives me crazy. But I know for her it’s a survival technique. So even though it drives me crazy, I understand it and I don’t usually make a fuss about it.

    Bill 16:16

    Yeah, I remember my wife trying to work out is this normal? Is he being more nasty because he’s a nasty person now? Or what’s going on? She was really confused about what was happening. And of course, every time I noticed something weird occurring on my left side or in my cognition or stopping a sentence in the middle of the sentence, she would always wonder Is this normal? Is this right? Is this whatever?

    Bill 16:44

    And although it’s foreign, and it’s something that you’ve never come across before, and you’ve never met anyone acting the way your mom acts now. It’s all normal, in that the brain might switch off every so often and it might go blank. And it might take a while for the cogs to start turning again. And it’s just something that takes time because it physically operates differently from what it did before the stroke.

    Bill 17:14

    And my wife, went through a couple of really difficult times with me because, at one point, I was on a medication that made me aggressive. And I remember yelling at her because she bought the wrong ice cream home. And it wasn’t a cheeky kind of yelling or it’s the wrong one or whatever. It was like the worst thing that you could have done. At the time, I had no idea what I was doing or what I was saying. It took quite a while for me to reflect on that and go, Oh my god, I lost it over the wrong kind of ice cream.

    Intro 17:55

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

    Intro 18:19

    If this is you, you may miss out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide, It’s free.

    Jim 19:09

    Feel as passionately about ice cream Bill. So you know, and I’ve not had a stroke so.

    Bill 19:15

    You’ve never yelled at somebody because they got you the wrong flavor.

    Jim 19:19

    I mean, maybe I have I don’t know. No, it’s cuz sometimes I wonder like with my mom, is it a medication? Sometimes my mom doesn’t get enough sleep. She’ll react like that. If my mom has an unrelated sickness, a cold or, you know, my mom has some lady stuff that happens that will just make my mom. so mean. So I hear you, I hear you. And does your wife ever say anything to you about it like, Okay, I need you to simmer down or did you just kind of roll with it and let you reset?

    Stroke carers roll with the punches

    Bill 19:59

    Fortunately, she kind of just rolled with it and let me sit which would make it difficult for her to have to experience those emotions on her own. And it was really difficult for me later when I was more consciously aware of how I was impacting her to see her go through that and actually just take it on the chin, so to speak, and just put up with it. She was amazing, but at the same time, if I had been like that for such a long time, and she had to just take on that stress all the time from me, I don’t think it would have been a great outcome.

    Bill 20:38

    I don’t think that she would have been able to just go on the way that I was behaving for a longer period. So it’s good that I came good. I would say I came good after I got off the medication which maybe lasted about, you know, three or four months however on your point about If I’ve had a bad day I’ve had a lack of sleep.

    Bill 21:05

    I am more fatigued which makes me cranky and need to get people around me to pull their weight when I say that, I don’t need them doing more things for me for my tasks, but my children who were teenagers at the time and now who are coming into adulthood I need them just to do a little more so that there’s less for me to do because I’m a bit of a martyr you know, I do this thing where Oh my god, everybody’s left everything for me to do and for me to clean up and that drives me, you know, around the twist.

    Bill 21:40

    And they a kid and they just do the regular stuff that teenagers do, which is going to make something to wait don’t put the plate away or little things like that set me off. And in the moment, I can’t. At the moment, I can’t stop myself from getting triggered. It is later when I notice and I have to get back and say, boys, I want to apologize for my behavior. Sorry for acting that way. It’s not an excuse, but I was really tired and so on. That apology has made it a little bit easier for them.

    Jim 22:18

    Well, you know, fatigue aside from that personality trait, was that always there before the stroke, or is that all new since the stroke?

    Bill 22:27

    It was there always before the stroke, but it wasn’t so dramatic and it wasn’t. Or I would say, it was more often but not so dramatic. So I was kind of one of those cranky dads who you know, needed everything done perfectly by everyone all the time. I’m a bit of a perfectionist, the kind of work that I did meant that I noticed little issues and those issues meant that if I didn’t fix those, I wouldn’t get paid.

    Bill 22:57

    And what that did was that brought that behavior to my home life, which I hadn’t realized. And then when stroke kicked in, it just amplified that behavior because I was dealing with fatigue, which is my biggest issue. I was trying to get less fatigue. And I was trying to have more energy for myself. But I thought I was lacking the energy for myself. And I was blaming other people for doing things that made me put my energy into cleaning up after themselves.

    Jim 23:34

    Yeah. You know, from my mom, in a very parallel way. For my mom, it’s this feeling of always being overwhelmed. So, in our effort to get her back to as independent as she can be, I would give her simple tests. I’d say Mom tomorrow, call the dentist and make an appointment for this time on this day. I would make it very simple and my mom could handle One item on the to-do list every day.

    Jim 24:02

    But if I give her two, it’s too much she has a breakdown and neither gets done. So I hear you. And it’s funny because my mom, I recognize that trait in my mom from before. She was doing 50 things a day before, and never feeling like there was enough time in the day and never feeling like she had enough of herself to give enough energy and enough brain power, right?

    Jim 24:29

    And what that has kind of boiled down into post-stroke is this feeling of all the feelings are the same, but the ability is hindered. So she can do one thing, not 50. So it’s funny how it’s, I think it’s about information processing, and it’s got an emotion tied to it. And that’s why everything you’re saying rings very, very true. And I don’t know where your stroke was or what type you had.

    Jim 24:56

    But I think that that’s something I’m learning about a lot of people folks that have had strokes is that the ability, it’s the life skills like you can get back things that are so commonplace and they’re just happening like you always did. But sometimes it’s one specific part of a bigger life skill that just falls apart. And it’s dominoes, you know that first domino falls, and then the rest of them are just a mess.

    Bill 25:23

    Yeah, my stroke was near the cerebellum. So near the center of the brain down low. And it was four centimeters in from the ear, which is about two inches like that, and it was a bleed. It was a blood vessel that burst and created a blood clot that was about the size of, I’d say, what you guys might call a dime or a 10-cent piece or something like that. And then it grew and it was about the size of a golf ball.

    Bill 25:53

    And because it was a blood clot, it was fluid and it moved It would impact a different part of my brain every day. As a result, I would notice different things, and different things would be triggered. And someday some things will be better. And someday that would be worse. And you’re right there was there was one little bit that I used to miss all the time. And that was remembering tasks.

    Bill 26:20

    And I used to have three or four appointments in outpatient rehab. I remember after I came home, and I would put them in my calendar, I would set reminders. And I would get the reminder, I would see the notification and I wouldn’t attend the appointment. And Christine would say, why? why did you go to the plumber i said I don’t know I didn’t go because I forgot. She said didn’t you get a reminder? I said I did. I read the reminder. Didn’t that trigger you to go? Nah, didn’t trigger me to go.

    Jim 26:55

    So funny. As a caregiver that drives me crazy. I’m sure Christine too because it’s not, it’s not so much that you forgot the appointment. I’m sorry, I live in a large city and you can hear sirens probably. It’s not so much that you forgot the appointment. It’s kind of again, it’s like what we project onto the person we love. We want you to be perfect and not forget the appointment, you know so that I’ve stopped being sad when my mom does it. And I go right to angry every time I have to remind myself Take a deep breath, as you said earlier, Bill one day at a time and we’ll get there you know, but yeah, that happens a lot.

    Memory struggle after stroke

    Bill 27:38

    The other thing I’m struggling with still, and it’s been 8 years in February, since the first episode, I struggle with some words and I get stuck with wear, wear, were, and where. I don’t know which one to use when. And it’s such a difficult thing and I’ll be writing and I have to stop and I have to think about which where is this? Is it w.h.e.r.e? Which one is it? And it takes me a little while to get that right but their, they’re, are there, makes no difference. So I’m good with that one.

    Jim 28:15

    Oh, yeah, that’s funny. Their, they’re, are there is harder for me anyway.

    Bill 28:23

    I know stroke survivors who couldn’t find the radio tuning button on the radio in the car. They get in the car start the car every day, want to change the channel, and don’t know where the button is.

    Jim 28:40

    And are you? Are you better off if you are left to your own devices to find the button or do you like it better when Christine helps you?

    Bill 28:52

    I prefer to just navigate my way through it and not be reminded or taught because then helps me create my pathways to getting to the solution. Whereas if somebody intervenes, then it kind of stops that pathway from getting strengthened. And Christine still does this. And I still do this from time to time. I get it, I start a sentence, and then I stop.

    Bill 29:22

    And then I start talking. And she says, before I start talking, she’ll need to wrap that she’ll say, oh come on, get on with it, finish up what you were saying. And by then, I may have forgotten. But by then I got cranky because she interrupted me. After all, she had a pause. And a pause normally means that she could stop talking, but not in my case. In my case, it means just waiting and listening. There’s more.

    Jim 29:51

    Parallel lives. My mom and I do it all the time. Or I ask her a question, and she pauses and doesn’t answer it. And I’m like, Okay. Why are you being quiet? And she’s like, I’m thinking, but I have to remember my mom can think for a few seconds. And then there’s the pause. So it could be like seven or eight seconds, which feels like an eternity, right?

    Jim 30:13

    But my mom’s a little different in that she wants me to find that radio button for her. And it might be because she’s 73 now. But yeah, she likes me to do things for her. About these sirens Bill. I have to tell you, I moved into this building three weeks ago. I’ve never heard a siren of course the one day we record something, sirens.

    Dealing with life-changing situations


    Bill 30:36
    It’s just what happens on podcasts, audio fails when you’re about to record, and all these things happen. It’s normal. So how about you though? How did your identity shift because you’re working, you’re doing all these things, and you have a relationship with your mom, which is normal for the majority of your life? You’ve always known your mom the way that she is. How does your identity shift? And was that traumatic for you? Or did you find strategies to be able to shift into that space of being a son/carer and organizer of all these things?

    Jim 31:17

    Yeah, it took my life and turned it upside down. To be honest. I am a producer, I produce live entertainment. So a lot of my work has me traveling around the world all the time. Right before my mom’s stroke the year leading up to that I had been around the world three times. Opening shows. So the long and short of it is my mom had a stroke and everything just stopped. And I kept my old job for about a year.

    Jim 31:50

    And I kept things going, I was successful. Everybody kept saying I don’t know how you’re doing it. But I also did it to my detriment. I gained probably about 45 pounds in a year and a half. I was eating in my car, I was living on airplanes. I didn’t cook myself a meal for two years. You know, before that I had run in 2016. I ran seven half marathons and used to love running. That all stopped. I ran a five-k last year. And that’s the race I’ve done in three years.

    Jim 32:29

    So to your point, and I hear you loud and clear about caregivers needing to make themselves that important. I just stopped doing that. I just had to focus on my job, which has always been a lot of responsibility, and then her, and then I wound up leaving that job that I had and I was unemployed for about two months and then I moved to Los Angeles for a job where I am now so holy cannoli life is Different.

    Jim 33:01

    But what I have been proud of is baby steps back to normal. So in a year, my mom had this life-altering brain event, and me switching jobs and both of us, oh, and you know, selling my childhood house and rehoming dogs, a lot of emotional stuff. Then I moved across the country all in a year. When I got here to California, I just said to myself, kid, you got to stop and breathe.

    Jim 33:33

    And you have to get back to yourself. And I wasn’t so good at that right away. It’s taken me some time. But um, I am back to it more and more. And work has been busy again, and I’ve been able to kind of find a balance. Having my mom in assisted living has helped me. That’s been important. And I’m slowly making the mind shift back to Jim, you have to make yourself a priority. Everyone at work will still be there tomorrow. Your mom will be there tomorrow. What’s going on with you now? You know, I’ve had to make that shift and that is a conscious effort every day to remind myself to do it. So it’s been tough but I’m getting there slowly.

    Bill 34:22

    Yeah, well done now, just when everything was going back to normal and you settled into California, your jobs going great. Mom’s being sorted. She’s getting better. Now, we’re dealing with this new worldwide pandemic of coronavirus. And your mom’s needs don’t change. She still needs to go to her appointments in the hospitals and all those things need to happen. How has that affected you now? How has that changed your thinking how do you have to help out your mom and what’s changed there?

    Jim 35:01

    Well, there’s a silver lining there in as much as where she lives has been locked down in this country, the first outbreak was in a nursing home in Washington State. And I believe, I don’t know the exact numbers, but all but like 10 of the residents got COVID-19 19 and there have been 30-odd deaths. So when that happened, every assisted living nursing home kind of just tied into the policies. I’ve not been able to go in and see my mom now for about three weeks.

    Jim 35:42

    And a lot of people are annoyed by that. I love it. If that’s gonna keep those old people alive. Then lock all the doors, close the windows, keep them alive, you know, as we know, COVID tends to kill people over 70 most but a lot of people are complaining, they do cute things. They do things like I visited my mom through a bay window. And we talked on FaceTime so I could hear her and see her in person.

    Jim 36:10

    And I told her that seeing her through the glass like that was like she had gone to Lady prison. And she thought that was funny. But, uh, you know, so how has it changed things? Today? My mom needs to this is a lot but I know you can handle it. She has to get a urine sample. So I can’t do it for her. I’d normally I would make arrangements to go up after work and help her do the thing. I would drop it off at the lab, you know, but today, I just called the nurse at the facility and I said this is what’s going on. This is where the specimen cup is.

    Jim 36:50

    She said don’t worry about a thing. What do you need me to do? I’ll do it for you. So locked down has kind of weirdly made my life a little simpler. Doctors do not see Patients unless it is medically important, if my mom had another brain event or something she’d go right to the ER, but my mom had a fall the night before her last minor fall. They didn’t know if she bumped her head or not. She had a little bit of a skin tear on her hand.

    Jim 37:17

    I said put the bandaid on Has she stopped bleeding because she’s on Plavix. Has she stopped bleeding? Yes, she is great. I said other bumps on her head. No. Does she say she has a headache? No. Mom, what do you want to do? I don’t want to go to the hospital. No. I said great. We’re not going to the hospital because in my mind, hard decision, but in my mind, the risk is almost greater right now of going to the hospital with all those people in there have coronavirus, so we made a decision not to go.

    Jim 37:49

    So it’s changing the decision-making process and it’s changing the decision strategy and it’s changing our schedule of appointments. But physically, I have found it less demanding because I can do it all from my house. I don’t, I’m not my mom lives about 45 minutes away. So if I go up twice a week, that’s a lot. Plus once I’m there, it’s never just an in and out right, it always turns into a thing. So it’s been a little more streamlined.

    Jim 38:22

    And, and one of the silver linings of this is as a caregiver who’s trying to grab back parts for my sanity time. You know, what I’m learning is, you know what, it’s okay to let people help you. I used to try to do it all myself. And in this case, with my mom, it might be a little more expensive, it’s already very expensive, might be a little more expensive.

    Jim 38:49

    Sometimes your sanity your time and your health are worth it. So if I can get out for a 5k run three times this week. Instead of driving to see my mom, that’s worth it. I’ll pay the extra 500 bucks a month, you know. So, yeah coronavirus has made things different, a little more difficult but I’m trying to find the silver lining inside of it.

    Bill 39:16

    Yeah, that’s what people don’t realize who are impacting the health system by not locking down and by not keeping their distance. I mean, that’s the only defense we have against coronavirus at the moment is to keep our distance. People don’t realize that the more people that present a Coronavirus case in hospitals, the fewer people that can be there for cancer, stroke, heart attack, and the plethora of other issues that people face every single day.

    Bill 39:47

    And those things don’t stop. People are going to continue having strokes, heart attacks, and cancer episodes. And we need to be able to help people get to bed, get a bed in a hospital. Under normal circumstances, let alone coronavirus. And I’m just saying that what we need to do is we need to socially isolate, we need to be responsible. And it’s the most caring thing that you can do for somebody is stay at home.

    Bill 40:15

    It’s never been asked of you before. And once in your lifetime, you’re being asked to stay at home and understand the economic impacts and all the consequences that are going to come. If we’re around. We can solve that problem later if we’re not around because somebody had a stroke and they’ve passed away because they haven’t been able to get care, or they contracted Coronavirus and they died.

    Bill 40:40

    There’s no problem to solve. They’re not around anymore. There’s no point in that and our loved ones need to be able to be cared for while they’re on their ongoing journey from recovery from all these other issues. So I think you’re doing a great job. She’s so lucky to have you and now that you’re getting to that point where you’re starting to realize that you’re also an important part of this relationship of stroke recovery.

    Bill 41:12

    Hopefully What that means is that you can take better care of yourself so that you’re a better version of yourself so that you can be around longer to care for your mum, but also you can be around to enjoy your life and the things that give you pleasure. That’s important because as a carer, carers should not give up their entire life as soon as somebody becomes unwell.

    Reluctance to receive care from other people

    Bill 41:35

    And in Australia, we have this thing called Respite I’m not sure what kind of services are available around the world. But those things are available to a lot of carers where the person they’re caring for can be looked after. In another facility outside of where they normally get looked after to give that person some respite for a couple of days or a week or something like that, and people are reluctant to do it.

    Bill 42:03

    Because usually, the person surviving from whatever it is that they’ve been through, is a little bit stubborn or embarrassed to be washed by a stranger, or something like that. And I can understand that. But if you’re a stroke survivor, listen to this and you need help. You can’t rely on just one person to support you and make it all about yourself.

    Bill 42:28

    If you’re a stroke survivor, it’s not just about you, and I know it’s about you. But it’s not just about you. It’s about that other person as well. And you need to give them a break. And you need to get used to somebody else, supporting you in the washing of your body and those things that are embarrassing, because unfortunately, if that person that’s loving you and caring for you, is not well enough to do that anymore, or they pass away early because they had one of their issues. Then you’re going to be stuck with a carer anyway.

    Jim 43:02

    That’s right. Yeah and you know, it’s so funny. It was like the fourth month when I saw my mom’s boobs. And I was like oh today It happened today I saw my mom’s boobs, you know, but to your point, it was almost harder for her because I’m her kid. So my mom’s a nurse, she doesn’t have a problem with nudity or caregiving in general.

    Jim 43:29

    But the fact that it was me was hard for her, you know, and she’d almost rather have a stranger than me. And it’s funny, it’s funny, and I never cared. I mean, I, you know, I don’t have a gender issue in terms of caregiving at all, even if it wasn’t my mom, I wouldn’t care guys, girls, but um, so I was like, oh, they’re just boobs.

    Jim 43:53

    But my friends make fun of me, of course, a little bit about it. So yeah, I hear you. It’s an adjustment on Both sides, I think for sure, but once you get over it once my mom and I could talk about everything from like lady issues to, you know, she’s got a rash under her left boob. She’s got whatever, you know that that conversation at dinner with that old man was uncomfortable like all the things were on the table and I think it helped make us a little closer ultimately, once you get comfortable with it, it’s okay. You know,

    Bill 44:29

    It sounds like it’s an enhancement to the relationship and you’ve seen your mom’s boobs before anyway when you’re a baby.

    Jim 44:38

    That’s hilarious. Yeah, I saw them up close when I was a baby, so it’s hilarious.

    Bill 44:48

    Why is it that we make it all weird later on? It’s just so bizarre. I get it. I understand. I’m from a Greek background and all those things are said good or bad and That kind of stuff and I get it and most people are like that. However, I’m not sure I’m not sure that we need to hold on to those types of things to make our life even harder to navigate when we’re in real need, you know, we need to let go.

    Jim 45:17

    And let me tell you something Bill, you’re hitting on something that you don’t even know about me. But my relationship with my mom has been so enhanced in terms of openness. So you know, I am from upstate New York, or a conservative little town, and the minute I turned 18, I started going down to New York City as much as I could. I fell in love with Broadway shows. I figured out that I wanted to date men, and I started living more authentically in New York City.

    Jim 45:51

    I would come back up where my very conservative father, my father voted for the orange president, and my mother’s not conservative. But still, it’s my mom. So I, there were a lot of parts to my life, especially in my 20s when I moved to New York after college, I did not tell my mom, any of it, you know, and then the 30s happened. I would tell her a little bit here and there, but she would stop asking me questions about my life because I was only giving her little tidbits.

    Jim 46:25

    Anyway, all this to say, since the stroke, there is nothing we don’t talk about because boundaries only impede my ability to help her. And she understands that and she certainly has no secrets. I cleaned out her entire house while she was in rehab, and all the things I found, you know, but I would bring them in and I would say, with no judgment, no emotion, here’s something I found.

    Jim 46:53

    I don’t know what you want me to do with this garbage or keep it or whatever and so, yeah, it’s been a real breath of fresh air. Everything’s on the table now. And it’s okay. You know, and there’s no judgment. There’s no like, secrets or anything. It’s been a real gift. You know?

    Good things can come from tragedies


    Bill 47:15
    Isn’t it strange that from this tragic stroke and this drama and this issue in this massive problem comes this opportunity for personal growth? And both from you and your mom. This is the thing that people don’t realize about chronic illness or any kind of illness it is a massive opportunity for growth and if you look for the opportunities to pay attention to where you have grown, and if you look for the opportunities to grow, you come out of it feeling like a much better version of yourself, even though that self might not be able to move that hand or put that leg on the ground or require help or something.

    Bill 48:00

    And that’s what I got out of it with my wife, I’ve become a better version of myself. And I’ve focused on not being cranky, the way that I was before and so anal and so difficult with my children. And then when I did do that I was still okay with it. I was still able to say to myself, you know what, you’re trying hard. You’ve done a lot of amazing things. You’ve put a lot of things in place, you’ve stopped being the old version of yourself and every once in a while, you can revert to some old behaviors when you’re feeling unresourced.

    Bill 48:36

    And you don’t know another way. Because you’re good enough to go back to the people that you were rude to, or aggressive to. And you apologized, and you never used to apologize. I had these conversations with myself and that makes me feel so much better because I did so early on. I did do the thing. Like if I kicked the bucket because of this thing, what are my family gonna think of me? And guess what everyone outside of the family would have thought I was amazing in a way that my funeral would have been full and all this stuff would have happened.

    Bill 49:15

    My kids would have said, Yeah, he was a good dad he provided but geez he was angry all the time. Or he always yelled and screamed, and it was always making us feel scared or something. And I hated that about me. And I just used the possibility that my days are numbered as the motivation to put things right.

    Jim 49:38

    Yeah, it’s really powerful. It’s so powerful. And I love that and I think that my mom has done that. And then with age, on top of that, she’s allowed herself a little bit of, an exhale, you know, because she also knows that she might have two more years, she might have three more years. She’s not old, but she’s had a major stroke.

    Jim 50:07

    And so vascular dementia, stuff like that. And so the long and short of it is my mom is enjoying the time she has now. And sometimes to me, it feels like, oh Mom like, why didn’t you call the dentist today to make the appointment? But my mom will say to me that I wanted to go outside today, and just have to remember that to my mom, that was the most important thing today, and that’s fine. It’s fine. She’s given herself this space. And that’s a lesson I need to take from her. You know,

    Bill 50:46

    I’m gonna ask you a question now just to bring this opportunity of growth and the awareness that you have about growth and the things that have come from that that were unexpected. How do you see this personal version of you now relating with people in your life partners in the future, or friends and family and everyone else? How do you see yourself being different now, in those relationships?

    Jim 51:15

    For me, a big thing I’ve learned is that I can’t control everything. For years and years, I was so successful at my job, and my career because I was OCD. I was a control freak. And I have a certain amount of talent in my industry. And I know what I’m doing and I have the right network, right connections. So if I just hung out about a nine out of 10 and I kept things moving, and then I made sure that I touched every piece along the way. Everything would come out, okay.

    Jim 51:52

    And people my bosses would be like, That was fantastic. You’re under budget. The show looks great. Congratulations. I’d be like thank you job. Well done. Ever since the stroke, I’ve learned that I need to rely on other people. You know, I could not have gotten through the first year and a half without my mom and nurses and doctors and even now at assisted living, the caregivers and the nurse on staff. They’re fantastic and they are part of our not team. They’re part of our family really, you know.

    Jim 52:28

    So that’s taught me to give up a little bit of control. It’s okay to let people help you. The other gift you reminded me of this a moment ago is the patient’s lesson. It’s taught me just to be patient with her and patient with myself. And so now if I’m dating somebody new, or I’m starting a new project with a new partner because I work with a lot of producing partners, just take a deep breath and don’t try to do it my way, even though I’m probably better at it, don’t try to suggest that we reinvent the wheel every time.

    Jim 53:10

    It’s okay sometimes to just sit back and let the process inform the decisions, rather than Jim drive the decisions. Um, and then just put people in my life, some people annoy the crap out of me. And I find myself sitting there and kind of looking at them with my poker face on. And in my head, I’m like, Oh my god, I should be so annoyed with you right now.

    Jim 53:36

    And old Jim would have gotten very new Yorker and told them off. And I just take a deep breath, and I let them ramble. And then I asked them a very pointed question sometimes to bring it back on topic or whatever it is, you know, or, or pointed out something I find that I don’t understand or I don’t agree with.

    Jim 53:59

    But yeah, It’s changed everything about my communication pattern my patience with myself and others, and how I strategize relationships professionally and personally. And what I need to do now is like really put Jim first so I have more personal relationships, right? So I can practice these techniques, which is something I’m working on of course.

    Bill 54:22

    Yeah, you deserve that man and you’ve done a great job for your mom. Now, as we wrap up, if people wanted to connect with you, or just follow your amazing Instagram page, where would they do that?

    Jim 54:38

    I am on Instagram @iamjimlanahan. I accept Facebook requests too I have an I am Jim Lanahan Facebook page that is tied to my page. So if you just search Jim Lanahan on Facebook You’ll find either the I am Jim Lanahan page or you’ll find my page. And if you don’t look like a crazy person, I will usually accept the friend request.

    Bill 55:11

    That means I passed.

    Jim 55:12

    Yeah, no you Oh yeah, yeah, yeah, we should be friends on Facebook. I don’t think we are, but we’ll make that happen.

    Bill 55:18

    I get such a laugh every time I go on your Instagram. I just love that it’s there. And you take me on the roller coaster ride of emotions that you go through A with your mom and B when you’re having a fun time. And even when you’re just watching TV and you’re commenting on one of the episodes or one of your favorite shows. I think it’s just an absolute screamer.

    Jim 55:42

    Oh well, thanks very much. You know, as I said, I do find it therapeutic. But the other thing I find so gratifying is just being able to put a smile on other people’s faces because I truly think the reason we’re all here is to just make each other’s lives better. You know, I’m a little Oprah Winfrey and that way, but I agree. So, thanks so much that means a lot.

    Intro 56:04

    Discover how to support your recovery after a stroke. Go to recoveryafterstroke.com

    The post Caring For A Stroke Survivor – Jim Lanahan appeared first on Recovery After Stroke.

    57 min

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