Stroke Survivor and Neuroplasticity with Bill Monroe

Episode 24 August 23, 2020 00:58:35
Stroke Survivor and Neuroplasticity with Bill Monroe
Freewheelin with Carden
Stroke Survivor and Neuroplasticity with Bill Monroe
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Stroke Survivor and Neuroplasticity with Bill Monroe led by host Carden Wyckoff

Transcript https://rb.gy/t2hrxu

Who is Bill Monroe?

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Episode Transcript

Speaker 0 00:00:04 Phil Monroe, Isagenix podcaster, corporate trainer, occasional voiceover artists in stroke survivor living in Seattle, Washington, bill grew up in New York, graduated from Helena Montana's Carol college, go talking saints and spend time in Boise, Idaho before life took them to the Pacific Northwest on June 3rd, 2017. Bill broke his Faisal ganglia when he woke up with a stroke, that was the last time he had full use of his left side lens. When bill got out of the hospital, he continued at home rehab and started on his mission to educate people about stroke, help other survivors share their stories and chip away at the silos that divide medical professionals, caregivers and patients, bill launched the stroke cast podcast on February, 2018 because it was this show he wished he had when he was in the hospital eating yet. Another bowl of lentil soup today. Bill works at Microsoft as a trainer, helping journalists use Microsoft products more effectively as they do their jobs in between meetings. They'll writes for the Microsoft news blog. In addition to the stroke cast, bill also hosts the two minute talk tips podcast where he helps folks become more effective public speakers in as little as two minutes a week, he also runs the Seattle young adult stroke survivors support group. He lives in the Ballard neighborhood with his wonderful girlfriend, Kathy, his medical records describe him as quote pleasant. You can find bill on Instagram at Bill's underscore stroke cast poor on Twitter at currently built. You can find him also his website stroke casts.com <inaudible> dot com. Speaker 0 00:01:53 Welcome back to another episode of freewheeling with carton. I have bill here on the line and we are going to talk about his journey with having a stroke and being a survivor and just the platform for change that he's created to help bring awareness to strokes. Welcome bill. How are you? Speaker 1 00:02:12 I'm doing great. Pardon? Thanks for having me. Speaker 0 00:02:14 Thank you. And I really want to hear about your story with having a stroke and talk a little bit about that. Speaker 1 00:02:22 Sure. Sure. Well, you know, it's something you don't expect to, or that I never expected to have happen to me in my forties. Suddenly one morning, Saturday morning, June 3rd, 2017, I woke up at 7:00 AM. It was a Saturday. So right away, if I'm getting up at 7:00 AM on a Saturday and know that something is wrong, but I woke up and my arm felt a little funny. I figured I just sort of slept on it wrong. And you know, few minutes later it would come back and I got up to use the bathroom and my arm didn't come back. It got a little bit weaker. And then my left leg began to go offline as well and had trouble standing and balancing on that. And then I looked in the mirror and half of my face was starting to droop. So I went back to the bedroom, sort of limped back there, woke up. Speaker 1 00:03:22 My girlfriend, asked her if she could understand me to see if I still had language and I did. And I told her, I think I need an ambulance. She called nine one one and a few minutes later, the ambulance was there. They hold me lights and sirens going to the local hospital about, you know, just, just a couple miles away. And I lived in that building for the next month. It turns out I had had an ischemic stroke, which means a blood clot formed in my right middle cerebral artery. One of those ones that gets suddenly narrow and branching, and it basically starved a chunk of my brain of oxygen and food and broke my basal ganglia, which is part of the brain that really sort of interface between thought and the physical movement of the Bonnie over the course of that day. I, my, my arm and leg lost more and more functioned until it all bottomed out at about three o'clock in that afternoon. Unfortunately, because I woke up with it. There wasn't really anything they can do. I mean, if you, you have it, once you have a stroke, you've got, you know, within the next three hours, you can do, they can do some amazing things to minimize the damage, but with a wake up, there's just not a lot you can do except treat the condition and make sure things don't get worse. And Speaker 0 00:04:52 Hey, learn that acronym in high school. Was it act fast or something? It was like, Oh, it's be fast. Oh, V fast. Okay. I knew it was something like that. So it's like face. So it, do you have facial? Uh, one side is drooping. Speaker 1 00:05:07 Then a arm B is for balance balance. They've added, they've added the BLM Speaker 0 00:05:14 More. Yeah. I think what I learned it few years ago, it was just acting out or something. Speaker 1 00:05:18 Yeah. Well, especially for younger folks who are more likely to have stroke losing to have more strokes affecting other parts of the brain balance and eyesight are some of the first things that can go in some cases. So sudden loss of balance, sudden change or loss in eyesight. Some people just have half their vision drop off. Some will have just the world rotate. 90 degrees F is for face a is for arms and ability to hold. Both arms out S is for a sudden loss of speech or language and T is for time to call an ambulance and get to the hospital as quickly as possible by calling an ambulance. Right. Speaker 2 00:05:58 And it's interesting because when I was learning about strokes in high school, you never wanted to drive a person who was having a stroke to the hospital instead actually call an ambulance because they can actually start the triage. They could start giving you fluids and other things and monitor you in the ambulance while you're riding to the hospital. And that's valuable time because it's, what is it? Three hours. Speaker 1 00:06:24 Yup. Within three hours, three hours, you can start doing clot busting medications, or I get there. They can, you know, physically remove the clot by running a, basically brought a ruder up through your femoral artery and the artery in your groin and actually go pull clots out. But the other reason you don't want to drive yourself or have somebody, or have somebody drive you is you don't necessarily know what hospital to go to. Not all hospitals can provide the same treatment and the paramedics will know which ones can provide that treatment, which ones have the neurosurgeons on staff and in the facility at that time. So it can get you to the right place. So it absolutely makes a difference to have that ambulance come there. Plus you bypass the triage when you get there. Speaker 2 00:07:08 Yeah. And I know it's a very expensive ride to where you need to go, but it, like you said, you don't know whether or not you drive to the hospital next door or three miles down the road and could be life or death. Speaker 1 00:07:21 Absolutely. And it's a, and it's a lot cheaper than longterm disability. Speaker 2 00:07:27 Yeah. I'm sure. So definitely choose the ambulance. Well, I wanted to go dive deep to what you were thinking at the time that was happening. So there was clearly some confusion there. How were you feeling with, or were you taking it? Speaker 1 00:07:45 It was it's interesting. I was, yeah, obviously I'm scared about what's happening and what's going on. But at the same time, I didn't have a very strong emotional response at the moment. Uh, I sort of fell back into it. Okay, let's get this done. What do we need to do what now? What next? I think when that was happening, that was lot harder on my girlfriend at the time was having to suddenly deal with all of this too. But my job was to lie there and live is really what it comes down to. And it probably also has an impact that my stroke was on the right side of my brain, which is typically where you see a lot more of the emotional stuff at play. So my left left side of my brain, which is where you get more than just the straight logic and that sort of stuff. That was the part that was still fully functioning. Speaker 2 00:08:46 And that's interesting just thinking about the different parts of the brain and where it affects it. Do you know other people that have affected, you know, the other side of the brain and what their longterm effects have been? Speaker 1 00:09:00 Yeah. It, it really varies, you know, every stroke is different to begin with left or right side of the brain. If you have physical deficits will depend on the side of your body. So, because my stroke was on my right side, I lost most use of my left hand and leg and had to, you know, sort of relearn to walk in that first month and, uh, and work with that. And, you know, I I'm sure most of your listeners who are very comfortable navigating with wheelchairs. That's, that's quite an experience when you get that, that first time when you can only push it with one hand as well. Speaker 2 00:09:36 Sure. Right. Yeah. If you've been using a manual wheelchair, it would be difficult to then only push with one side, maybe better to get a power wheelchair for the meantime. Speaker 1 00:09:47 Right. Uh, but other things that'll happen is especially on the left side of the brain, that's where a lot of our language centers are, especially if you're right handed your language centers are probably on the right, on the left side of your brain. And, uh, one common thing that happens with stroke is condition called aphasia and aphasia. There's a bunch of different types, but the short version is that you lose access to your vocabulary. And that can be extremely frustrating because you still have all of your thoughts. You still have all of your intelligence, you still have all of this going on and you still know exactly what you want to express, but you just can't get the words to do it. You just can't access those words. And you know, when you can't communicate, that becomes real challenging. Speaker 2 00:10:40 Sure. I can only imagine what that is on your mental capacity and fortitude, how it is it to just feel like you have all these thoughts, but you have no language to communicate that it's almost as if you, I don't know if you essentially, you're, you're becoming nonverbal at that point. Speaker 1 00:11:00 And, and a lot of people that does happen to them that, you know, they become nonverbal and you just can't, you just can't get it out there. Right. Other people will experience short term or longterm memory issues where you won't be able to retain anything from the last 15 minutes. Um, because we're talking about muscle issues, you can encounter issues with swallowing. Are you going to be able to swallow? Are you not going to be able to swallow and really the, the spectrum of things that can go wrong and that you have to learn to deal with. It's just, it's just so huge and such huge variety. Cause again, it's your brain that is literally dying in a stroke and that's sort of the core of everything we do. Speaker 2 00:11:49 And a lot of it, I guess, plays on that are the side and the symptoms that Speaker 0 00:11:54 Come afterwards will be effected by how quickly you caught it. If I get the clot, right. Are there any other factors? Speaker 1 00:12:02 Yeah. That's, you know how quickly, uh, you caught it, whether it was a clot or a hemorrhage, a bleed because, uh, some people will have, uh, have a bleed and the brain is very particular about blood. It wants to always have blood very near it, but never touching it. And once you have, once you break that system, then things can go very wrong very quickly. One of the things they'll do with people who have hemorrhagic strokes or bleeds is it's not uncommon to actually remove part of the skull for a period of time because the brain is swelling and the swelling can squeeze it and cause damage to they'll actually remove part of people's skull and then put that aside or sometimes even put it in the, in their, uh, in their belly to keep it safe until they can re-install that, and there's all sorts different things, but you know, getting to the right facility, getting there fast and having the appropriate treatment when you get there. Speaker 1 00:13:01 And once you're past that initial stage, the initial trauma of the event, getting into rehab as quickly as possible to start retraining the brain, to start relearning and start rebuilding all of those different neuroconnections. So one of the amazing things about our brains is that they're always changing. We have this, this, this thing called neuroplasticity, which describes how nerve cells can regrow and be reborn and re-established connections and sort of work around those dead spots. And, and that's sort of what I've been doing for the last three years. You, you know, you get into tenue to get progress and get better years down the road. But that initial time immediately afterwards is really where you're going to make the most recovery fastest. Speaker 0 00:13:50 I want to talk more about neuroplasticity in just a second. And I want to jump in quickly to a little ad for I access life. And if you have a disability or are with friends and family with disabilities, have you ever gone somewhere and faced accessibility issues such as an entrance isn't wheelchair accessible venue, super dark and would pose challenges if you had low vision, two of my really great friends, Brandon and <inaudible> in Atlanta developed, I access life. I access life is a mobile app that lets users with disabilities rate review and research places based on their accessibility. You can rate places like restaurants, stores, transit hotels based on their parking entrance, interior space and bathrooms. It's like the Yelp for disabilities access life is found on the app store and Google play for Android user referral code card in my name C a R D E N when signing up that car, D E N. Speaker 0 00:14:45 Now back to the discussion about neuroplasticity and neuroplasticity has been heavily researched right now in the Alzheimer's and dementia community. And I know that because I'm going to die of Alzheimer's and dementia. I just know I am because it runs very thick on both sides of my family. I don't have cancer, I don't have diabetes. I don't have high blood pressure. None of that, everyone, both my grandparents on my dad's side passed away. And they're good. They're great grandparents as well, passed away from dementia Alzheimer's and then other complications, do you know that the body eventually collapses like liver failure is kind of when it, when it all ends. And then, uh, Speaker 1 00:15:29 And, and how does your, uh, muscular dystrophy impact then outsiders of the prognosis for it? Speaker 0 00:15:36 I don't know exactly. And it is a little scary to think how dependent I am on other tools and work arounds to accomplish goals. I'm wondering though, if having such a creative mindset from having muscular dystrophy and dealing with the progression each year is a different thing and you have to adapt and transform and problem solve all the time. I'm wondering if I have built such an incredible neuroplastic brain that I'm basically immune to Alzheimer's and dementia. I think that would be fascinating to do research on. Speaker 1 00:16:18 Yeah, it, it, it really would. I mean, that's one of those, one of those things where when you start looking at what the brain can do, it's AIDS, you gotta keep working, gotta keep learning and you can, you can do some amazing things. It's an active brain, makes a big, makes a big difference, stretching it and trying all these different things can, can give you an advantage. Ah, I, you know, it's one of those things that sort of on, uh, I'm, I'm looking at it now because the stroke survivors are at also increased risk of vascular dementia. And they're not really quite sure why last time I looked at that research Speaker 0 00:16:53 And let's dissect what vascular dementia means. So vascular meaning like blood vessels, arteries and dementia tying to not remembering things Speaker 1 00:17:07 Exactly. It's, you know, uh, and I'm not sure on all the details on how that one works out, but it's, you know, the ongoing damage and trauma to the blood vessels that leads to more challenges down the road and how, and how that, how that looks. I don't think there's been a ton of research done in that area yet. And I think that's one of those things too, where, because most folks, this is the perception that again, stroke only happens to older folks and, you know, it's just not true. I mean, I've known plenty of people in their twenties and thirties with, with strokes and, you know, I've, I've worked with pediatric neurologist to treat with strokes, you know, cerebral palsy, a, another condition. Many of us are familiar with roughly half of folks with cerebral palsy acquired it as a result of a stroke in utero or shortly after birth. Speaker 2 00:18:04 Yeah. Losing oxygen to the brain. And yeah, that's very, very interesting to learn about that. And yeah, I think a lot of it is I understand ties back to a lack of oxygen to the brain. So this vascular dementia, is it saying the vasculature isn't able to supply the oxygen to the brain? Speaker 1 00:18:26 Yeah. That's currently, yeah. I'm not certain of what the details are of that, or if they're just not as effective or if it's just a longterm recurring type of thing. And again, I think a lot of times that it, you know, it hasn't been looked at as closely because it was just associated. Cause if you assume that only older people had strokes, then it was just sort of comorbid with the stroke rather than potentially cause. Speaker 2 00:18:52 And neuroplasticity as the topic is so fascinating to me, how do you basically retrain your brain and continue you to always be learning? And I know they always tell you, you know, they have all these mobile apps now to help prevent dementia, like puzzles and games and, and learning language learning and stuff. I mean, are those true as it seems like you're a very good expert in stroke talks. Speaker 1 00:19:20 Yeah. What, what I've seen with those is, you know, I would say if you enjoy playing them, absolutely go for it. I think the actual clinical research on the impact they have is mixed at best. I think it's one of those things where generally, when we look at research and other things that are going to cure you, it's like, wait, you know, I think if it doesn't hurt you and it doesn't cost you a ton of money and it doesn't take time away from your regular rehab, go for it. Maybe it works maybe not, but then there's no harm. Got it. What I think is dr. Karen Sullivan, a neuropsychologist has said is that the best form of brain games is talking to people. It's building relationships, establishing relationships with people and making those, making those connections that way. That's going to give you that richest richest experience when it comes to actually engaging neuroplastic, neuroplastic change in stroke recovery, a lot of it comes down to, you know, the stuff, you know, it's gone out of fashion to say that rote memory is the way to learn and things like that. Speaker 1 00:20:33 But when it comes to training the body and training the brain, it really is the reason we do exercises in PT or occupational therapy is to, we're not so much working the hand. We're not so much working the leg, working the brain, we're trying to engage it and to build those patterns in the brain, it takes thousands of repetitions, tens of thousands of repetitions to reestablish those connections. And that's what it's about. It's about doing that over and over again and doing it right in order to foster that change, that neuroplasticity comes down to the core principle of nerves that fire together, wire together, you know, that's the simplest description of it. And the more you do it, the more those nerves fire together, the more they're going to wire together build deeper connections among themselves. And that's where the power of the brain happens. Speaker 0 00:21:28 The restorative therapies was pretty fascinating. I was listening to a number of your podcasts and reading a number of your blogs that talked about restorative therapies using East. Em, so electrical stimulation movement is super important. And something that I actually did in high school was come across felled in Christ physical therapy, which I wouldn't really classify it as physical therapy. It's just a different form of movement and training your brain, how to move in a specific way. Have you heard much about felled in Christ? Speaker 1 00:22:00 It, you know, it's, it's interesting. His, his work has been sort of the core behind what a lot of the occupational therapists I've talked to have, um, have built some of their stuff on. And he takes us really, really interesting approach. And it fell in Chris, we're talking about going back to the fifties or sixties here when he was doing his work of just, you know, essentially it's stimulating the brain by moving the limbs and very specific and slow way, rather than necessarily having you go out and do things. It's just that sheer movement, which, you know, regardless there is going to be a lot of value in doing that. Because once you stop doing things, once you sit, just, just sit still and that's all you do then yeah. Then, then that's going to cause a lot more problems. I, even, if it's as basic of, you know, I know that if I would just add a camera, you can't really see it. But what I'm doing here is I'm constantly bending my fingers back on my affected hand. So that, that stretching. So the tendons don't get short and the muscles don't get it, Speaker 0 00:23:10 Do that too. I put them up. I actually, I often during the day I'll put them on the edge of my desk to stretch out my fingers. And that also helps with the forearms. So yeah, we all have our little corks and things, Nelly because I have contracted muscles all the time. So, Speaker 1 00:23:28 So do you use a Dysport or Botox as well for that? Speaker 0 00:23:33 I have not used Botox for any therapies. I haven't actually looked into it or heard any, anything about it. That would be helpful, but I'm all here to listen about it. Sure, sure. So Otoks, Speaker 1 00:23:46 It's I mean, you know, most people know it for getting rid of wrinkles in your face, right? Dysport is just sort of a competitor. It's another botulinum toxin, but what it does is the reason it gets rid of wrinkles in your face, is it, it knocks out the muscles, it's a neurotoxin to do that. Well, the tone and spasticity that curls my arm up and curls my hand into a fist it's because my biceps are firing too much. So my arm won't go straight. My forearm, other muscles are firing too much, which contracts my hand into a fist with the Botox injections do is they actually deaden that muscle. They deaden the bicep to give my tricep a chance to come back and get some practice in. And it relieves that own. And that's <inaudible> and that girling and it's, it's made a big difference for me. It doesn't help everybody. But for folks who are dealing with those clenched fists, those curled up arms, those hyperactive muscles, it's an effective, it can be an effective treatment. Speaker 2 00:24:53 How fascinating now? I mean, I'm definitely gonna look more into that because I'm all for trying new things and seeing if they help or whatever the disability is or prognosis that you have. So what was your favorite memory in the hospital? Speaker 1 00:25:10 My favorite memory in the hospital was those days, what we would do after the first three or four days when I was approved to be leave my room. It was when my, my girlfriend would wheel me down to Starbucks and we'd go to the Starbucks in the lobby and then just go sit outside the hall, outside the lobby in front of the main entrance to the hospital, watching the cars come by and it was June. So it was beautiful here in Seattle. And, you know, even just to sit there outside in the sun, I did get a very Sunbird because that's what I do. But even if we're just sitting there for just an hour, hour and a half before my next therapy appointments. Yeah. It was such, such a simple thing, but such a great way to break up the day and, and break up the week and, uh, Speaker 2 00:26:07 Just feel normal, whatever normal, how you define normal. But I feel like you're cooped up in the hospital all day long. It's like experience outside again. Speaker 1 00:26:18 Exactly, exactly. I think I, you know, I think, you know, overall and I'd love it if they would sponsor me, but I do have a Starbucks theory on recovery and that we talk a lot about in recovery about goals and smart goals. And your goals for your rehab should be simple, measurable, achievable, realistic, and time bound. But I've seen, especially here in Seattle, we've got them on every corner. Starbucks becomes a model then for which Starbucks you've able to walk to. Are you able to walk to this one? Are you able to walk to the next one for folks with aphasia? Are you able to go in there and order your beverage and interact? Do you, have you acquired that skill for folks who deal with sensor over with sensory stimulation issues and are overstimulated because the part of the brain that filters out stimulation breaks down, at what point can you handle that environment? Can you hold up with an effected hand? Can you do all of these different things? Could you count out your money or those types of things and all those things can be done in the framework of, you know, getting you your caffeine fix or your a fix or whatever it is. But I've, I think it did. It can be a helpful model from that perspective. Speaker 2 00:27:36 Yeah. You're you, I mean, there's so many things that you're encountering. When you go to Starbucks, you're interacting with people, you're pressing buttons to order something you're holding something. So actually even like reaching out and grabbing, you're having a member, your name when they call your order and then just dealing with the environment itself. I mean, there's just so many things to it. Yeah. That's actually quite interesting. Speaker 1 00:28:01 Yeah. And then going from the skill of sitting down in the regular chair to sitting down into the bar stool chair. Speaker 2 00:28:07 Oh sure. Yeah. Even all those, and then Starbucks generally has, I'd say it's more of a darker vibe inside, like the dark furniture and, and why not? So can you deal with the darkness or do you get overstimulated by going out into the sunlight? I know that plays a big toll on some people who have vision sensitivities Speaker 1 00:28:33 Exactly. Or, or people who end up who, who live with Hemi Apia or similar conditions of just losing that's another one of those fascinating stroke things Speaker 2 00:28:45 Or syndrome is mine. Speaker 1 00:28:47 Yeah. Or losing just the right half of the vision for each of your eyes. Speaker 2 00:28:54 Right? Yeah. I actually interviewed someone, uh, in my earlier podcasts who had stickler syndrome and it's just mindblowing to know at any second, you can go permanently wide and it's just so crazy. And it just stepping into a world of vision loss and how vision plays such a key part in our life. So, absolutely. But anyway, getting back to your story and so you had a stroke, you were in the hospital, you went through therapy and I understand you use a cane and you're really big on one handed Washakie. So I know with COVID being really Speaker 0 00:29:42 Big, how has that then like washing your hands with one hand it posts, tell me all about it. Speaker 1 00:29:50 It certainly poses it poses a challenge, you know? And that's one of the things you don't realize. You know, when we start talking about, you know, what's, a lot of people were talking about this, this broader concept of privilege now. And what that means is like, I kind of understood it before all this happened at an intellectual level, but as a CIS heteronormative white guy, it was never really something. I, I thought about a whole lot until I'm suddenly thrust in the world of, of, of disability and realizing things. You just don't think about like the soap pumps and a lot of public restrooms got that long. So, so speak it. And you've got the other thing that you're supposed to press and you have to be able to press it while keeping your hand under there at the same time. Speaker 0 00:30:40 Yeah. I can't do that. I can't use those at all. When I see, I just, like, I find the nearest hand sanitizer that you could find because I can't wash my hands using the soap. If there's someone next to me, I'll be like, Hey, can you squeeze this soap for me? Because I, I can't. But yeah, it's, I know you've definitely stocked a lot of your episodes and blog posts, but I loved the section that you had. You had it for a little bit of time. You were doing life hacks. Speaker 1 00:31:06 Yep. And still we'll still do the hack of the week. Speaker 0 00:31:09 Oh, you do. Okay. They got to sit on a few, but I loved hearing about, or I guess reading about the iPhone using a camera and everything, and that's something really big in the vision community is taking a picture and then zooming in on your phone to enlarge anything and to reduce any glare. Some of those shoelace hickeys to help tying things, because yeah, as, as you face your, you had a stroke and now you have issues with dexterity. I face issues with dexterity as well. I have very low dexterity in my hands. So grabbing, holding, grasping, like pulling any type of those things can be very difficult. So I, I loved reading all your little back, the rubber glove on the soap. Like it's so cool. What are some of those other things that help you get through the day? Speaker 1 00:32:01 Let's see. I, uh, I'm a big fan of the mop holders. I used to use these use these. I can get around my apartment without the cane usually. But what I did, especially for the first couple of years, I had mop holders stuck up all over the apartment so that when I sat down someplace, I could clip my King to the wall. Speaker 0 00:32:21 Oh, right. I was like, what would you use the ball folder for? And then I'm like, yeah, you have a cane. Yeah, Speaker 1 00:32:27 Exactly, exactly. So that has worked out. Well, another thing that has been super helpful has been picking up a roll of Dyson, D Y C E M. This is this thin sort of rubbery plastic material, but it's a very high friction type of thing that you can just put it down and then stuff does not move on it. Oh. So it's a lot of the occupational therapists use a lot of it. You'll find it in a lot of hospitals and stuff, but you can just buy it on Amazon. Because one of the things I can't really do is things like stir yogurt, because you have to hold the yogurt canister while you stir it. Otherwise it goes all over the place, but you dice up the sheet of dice them down and stuff is all reusable use the same piece for years. And it's washable, put it down, slap a yogurt container on top and it stays still so beautiful. Speaker 0 00:33:20 Wow. I need to get some of that because you didn't, when opening up cans, they slide all over the place. Yeah. Difficult. It's just, it's a messy thing. Speaker 1 00:33:29 I also love my one handed can opener. Okay. Speaker 0 00:33:33 Please tell me where you found this. How do I get one? Because I was opening up a Canada tuna for my cat today and it was the word I just, that can just wouldn't open. And I just, Speaker 1 00:33:44 I can't do it. Yeah. This is a, I found that on Amazon also, I'll say I'll send you the link, but it is, it's a one handed thing. So you just sort of squeeze it onto the lid. And then I just sort of squeeze with one hand and it works its way around the Canon cuts through the lid. Super easy. Speaker 0 00:34:02 I love that. And even I started doing a lot more research on dexterity and products of things that are easier to like grasp and hold. And there's silverware in plates and cups that have been adapted to not necessarily just people who, who have strokes, but really anyone who has low dexterity in general. And it's fascinating. Any particular products or brands that you use? Speaker 1 00:34:32 Um, well I think from the general stuff, if you go to bed bath and beyond and look at the Oxo brand stuff, their stuff tends to be a lot more comfortable and usable. You could also go ahead and just search online for occupational therapy supplies and you can actually order analogs of this stuff. That'll work for you. And the other thing to check out, check out the, as seen on TV store, I know that as seen on TV stuff and you know, that's actually one of those other things too, where you see a lot of people mocking as seen on TV. And that's sort of another manifestation of ableism because a lot of the products that get positioned as, as seen on TV stuff are really fantastic for people living with disabilities. And we're probably designed that way to begin with, but the only way you can get them to market is to put them on the, as seen on TV. So don't shy away from looking at the, as seen on TV stuff the late night infomercial gadgets, because a lot of times that can make a big difference. Speaker 0 00:35:31 Fascinating. Yeah. I think the mat wasn't a magic bullet or Ninja bullet or something was on as seen on and I can use it with one hand and make a smoothie. So yeah. Yeah. I can very much relate to that. Speaker 1 00:35:44 Yeah. There's a, there's a sock item out there now for make it easier to put on your socks. Cool. That's amazing. Which is, which is really cool, Speaker 0 00:35:53 Really helpful. I know I have a friend with cerebral palsy and he has created this or his friend created this mission basically machine to be able to help him put on his shoes on his socks because that poses a challenge for him. So getting really creative is the best thing to do. Speaker 1 00:36:09 Yeah, absolutely. I also have a rocking steak knife, so it's Oh yeah. It looks like a medieval weapon, but it means I can sort of hold it. So instead of trying to hold a knife, the traditional way, I can just hold it in my fist, the blade comes out the bottom and I can rock it back and forth. So I cut meat without having to use my left hand to hold it in place. And what I got, Speaker 0 00:36:34 How many devices that are really helpful to benefit when you have one hand or not that you are. Yeah. You know what I mean? You hope you have use of one hand. Speaker 1 00:36:44 Oh, absolutely. Absolutely. Yeah. And then the other thing is when I go way back, like 80 years ago, we used to be able to go to restaurants. One of the simplest things I found when going to a restaurant is I used to have to think about what do I order it? And I have to order something that I don't have to cut until it occurred to me just as the staff, just ask the waiter, can you ask the kitchen to cut this up for me? Speaker 0 00:37:09 That's what I do. Yeah. It's so easy. And you think like it's a big deal to them and it's really not. Yeah. There's this restaurant down the street from me and the owner. I know the owner pretty well, cause I'm there all the time. And he's just learned by watching me, um, like try and cut a chicken or try and cut a burger and he's a carded. Do you want me to cut that? And now, now anytime I order food, it comes out automatically and it's pretty cut. And I'm like, hi, love that. Thank you. So I think it just, it takes sometimes just people watching and seeing it be difficult and being like, how can we make that easier for you? So don't hesitate at all. I asked to have my, my food cut all the time, because if I can't do it, then someone else can, and they got sharp knives back there. Speaker 1 00:38:00 Exactly, exactly. The other alternative is that otherwise they're going to have to watch me in the fancy dining room, pick up the whole steak in my hand and just start gnawing on them. Speaker 0 00:38:09 Right. Yeah. Well, thank you for all those life hacks. Those are really awesome. And the products that are helpful for you and probably a lot of other people I do kind of want to get back into just your personal take on how the stroke has affected you in terms of like your identity. So pre stroke post-stroke and then also just what would you advise for the non-disabled Speaker 2 00:38:36 To not necessarily help you, but because we don't always need or ask or welcome help, but what would be the best thing that you could say to the non-disabled community when you're out and about? I'm sure you get looks all the time. Speaker 1 00:38:50 I do. Well, there's been lots. It's been a very interesting, first of all, one of the things I, when I first started going out and about, and I was moving a lot slower and I had my arm in a sling all the time and, and things like that. So it wouldn't fall out of my shoulder was I expected to be a lot more nervous walking around the homeless and a lot of those folks that, you know, a lot of us able to see and, you know, clutch our wallets closer and get a little. But what I found is that that community was just so much more friendly and welcoming, just walking by and including, I once got the cripple discount. Uh, one guy is out there asking everybody who walks by to give him a quarter. Did anybody give me a quarter? Give me a quarter. Speaker 1 00:39:34 I won't mess. He asked for a dime. Um, Oh wow. Okay. But I think out in about the most important thing, folks without disabilities can do is that if you offer assistance and someone with disability, declines, respect that decision. Because a lot of times maybe we won't lead help. Maybe we don't. And if you try to help, when we don't need help, you're going to cause problems. We have this routine down, we know what we're doing, we know how to move. I don't need you to grab my cane for me. I don't need you to help me out of this car. I can do it. I know how to do it. Once you distract me and start trying to help, you're going to confuse me, or you may grab the wrong arm and hurt me and you don't. And I'm sure yet you've, you've had the experience of people insisting on pushing your chair or whatever. And it's like, Oh yeah, just respect us when we say I got this. Yeah, Speaker 2 00:40:38 That's so true. I know a lot of people just, especially in manual wheelchairs, if they're driving, you know, they have a system of how they take apart, their wheelchair, throw it in the back of the car and then transfer into the car with no issues. I know some friends at the spinal cord injuries and people will try to offer help and it actually just takes more time and they risk falling or not transferring correctly and injuring themselves. So yeah, I very much agree with that. Speaker 1 00:41:09 Yeah. And then in terms of identity, I think I'm still trying to figure that out. Um, what that means. I mean, it has, this whole thing has opened up, well, it's got me thinking more about mortality. Of course, when you go through that and you know, immediately rolled into a CT scan out of an ambulance that, you know, that certainly gets you thinking, but it's is a lot of things I want to do now. And there's a lot more sense of urgency about it, whether that's producing content, producing podcasts, you know, thinking about what am I going to do to, right. There's this sense that, you know, time is more limited. Sure. And then as I go through and go through this experience and, you know, live life with these disabilities, the other thing that becomes very interesting too, is where am I at in two years? Speaker 1 00:42:12 What has it been if I have recovered further, what does it mean to then give up the cane or shift back into that perspective, knowing I'm always going to have some of these disabilities, but when I'm no longer, or if I'm no longer visibly disabled, what does that mean for who I am now? Uh, and sometimes participating in the community. I also have to deal with some of the imposter syndrome because I feel very lucky with how my stroke went because I came out of this. Yeah. I lost the use of half of my limbs. And if you had told me the day before on June 2nd, 2017, that tomorrow, that or that today is the last day, you'll use your left hand. That would have been like horrifying. But now that I've lived, it it's like, I mean, I was never athletic to begin with. So I'm probably not any worse playing softball today than I was before. Speaker 1 00:43:21 But when I look at other folks in the community who may not have speech who may have significant cognitive challenges who may have more severe physical challenges, you know, it's like, am I a part of this community too? If I can get further a walk a little bit further with my cane, should I be using that disabled parking spot that everybody agrees I'm entitled to? And you know, when I'm talking with other survivors or even being a spokesperson for the community, when I, you know, especially on a, on a video conferencing platform, I can quote unquote pass as fully abled. Yeah. What does that really mean Speaker 2 00:44:13 From the, you know, from the neck up? No one would tell it same thing with me. If you look at me neck up, you wouldn't know that I use a wheelchair and you want to know that I have a muscular dystrophy, probably. So it's interesting how you feel as you're not disabled enough to earn and use services there to protect you such as handicap parking or other accommodations that are provided to you under the ADA law. How has the ADA helped you? Speaker 1 00:44:55 Well, I think the ADA has helped me in a lot of ways before I, I, before I acquired my disability in that a lot of accessible design is just playing good design in my previous previous life of hauling luggage and hauling also to demo gear back and forth in my training role, curb cuts and automatic doors made a huge difference in just getting around in the world and, you know, door handles instead of door knobs. They make a big difference to me now what's interesting is once I, uh, once I acquired my, uh, my disability and nature of walking, actually using ramps was a lot harder for me than using stairs because of the nature of the way my ankles work now. But what it's also mean is that when I entered this world, there's already an assumption that things ought to be accessible to, to a degree. Speaker 1 00:45:59 That's not always the way it's supposed to be obviously, but that is certainly made a difference. There's an assumption. There's not an assumption that, Oh, because you're, you have a disability, you shouldn't have a job. You can't contribute to the world. There's, you know, uh, uh, you know, I, I work with Microsoft and, you know, my organization, my department, my colleagues have been absolutely fantastic about working with me and, and with us and doing what we can. And it also means that there is a platform there to support me when I advocate for other questions around disability. Like, yes, we need to have all the text on the pictures. Speaker 2 00:46:41 Jenny Lee flurry is incredible. Speaker 1 00:46:44 Yes, yes. Speaker 2 00:46:46 Is such a huge advocate for accessible products and just disabilities in general. So definitely she's the chief accessibility officer for those who don't know who Jenny LeFleur, he is for Microsoft. And she is a powerhouse. Speaker 1 00:47:00 She really, she really is. And you know, each year the Microsoft's had a disability summit where it's an intern, a lot of internal event for folks with disabilities, actually, it's the ability summit. And then there's a, on one day of it, they open it up for a recruiting and job fair for people with disabilities from throughout the Seattle area to actually come on campus and meet with recruiters and do demos and doing some amazing things with things like the, the Xbox, uh, D uh, um, Oh, accessible controller. Speaker 2 00:47:35 Yeah. I know Satya, your CEO said, and I'll never forget this quote. He said, accessibility should be run like a business everywhere. And that's so true. It should be run like a business. It should be thought in every decision of anything, because if you design with inclusion first, you create equity for all. Speaker 1 00:47:58 Absolutely. Absolutely. And on top of it, with more than 20% of people are going to be a part of the world of people with disabilities. At some point, that's a heck of a lot of people you cannot throw away. Speaker 2 00:48:13 Totally. What are some of those, if you don't mind me asking, what are some examples of workplace accommodations that you ask for, or if you don't feel comfortable sharing your specific workplace accommodations, what are some that you could say to stroke survivors or anyone with low dexterity, whatever to ask for when they are looking for jobs? Speaker 1 00:48:35 Well, first thing I would say is look at your it, your, your keyboard. A lot of places have the really nice ergonomic keyboards that does not work for me because I have to type with one hand. And if you have to type with one hand, they're special, one hand to keyboards, which might work, but just a simple, straight keyboard works great for me, I'm up to 30 words per minute. One handed typing that Speaker 2 00:49:02 Wow, fast, Speaker 1 00:49:04 I would also say, look into fancy things you can do with mice. There's lots of amazing hardware out there in the gaming world, especially gaming mice and keyboards, because they have lots of different short techies. So because I can do a lot more with my thumb, I can, I've got like five or six different shortcut keys I use when I'm editing content just by having that. And that makes a big difference because you're not gonna use the same, uh, same other settings. If your have an it department, that's strictly controls what you can do with your device and make sure they turn on sticky he's for you, whether you're on windows or a Mac, which makes it possible. So instead of holding down shift, while you type it up, the key, you can tap shift and then tap another key. And that makes difference. Stroke survivors be flexible on, on, on, on work schedules because neuro fatigue sucks. Speaker 1 00:50:03 It's a level of tired that EOI had never encountered before. So what can happen is I can just be going along. And then the level of exhaustion just suddenly hits. It's like when your cell phone battery suddenly drops from 40% remaining to 3% remaining, and it's not something that you can just push through. So if you can have some flexibility in your to go ahead and especially now with more of us working from working from home, go ahead and be able to nap for a few hours. It makes a big difference to be able to do that and rebuild that energy. And beyond that, a lot of it comes down to what are your particular disabilities that you're working. Maybe that means you're going to look for need, if you're onsite Wyatt or office quieter facilities, headphones, to help eliminate some background noise to help you control the level of stimulation. Speaker 1 00:51:03 It's very easy. Like I say, we talked about overstimulation for that is a big issue for some folks. And just generally what I have in my experience, what I have found is that I don't have the margin that I used to. So if something goes wrong, a lot can go wrong very quickly. I, I, um, back in January, I slept, I hurt my, my, my good shoulder by sleeping because I'm in my forties. And that's a thing that happens now. And, uh, which left me with just a lot of pain while using pain takes away energy. And, you know, you find, I don't have that reserved, you know, I can push through the pain, but the sheer exhaustion meant I just have to stop. And, and so once you get tired things, everything else starts to collapse a lot more. So it's about being flexible with that. And aside from that, it's ultimately, it's going to be about how you're going to communicate, how you're going to work, set those clear expectations and understand as, as a person requesting accommodations, what do you need? What will make it help? What were the focus on, on the benefit? What do you ultimately want to be able to do and how can you do it? Speaker 2 00:52:25 Yeah. And that's so true to ask for what you need, but at the same time, sometimes you don't know what you need, but I think if you were to start with, okay, walk me through what you do on a daily basis, and what challenges do you run through. Then we can come up with a plan to see about accommodations of workarounds and problem solving that particular task to make it easier to reduce neuro fatigue, to reduce the pain and the dexterity fatigue that you, or your hand fatigue that you face when typing. Speaker 1 00:53:02 Yeah. Speaker 2 00:53:02 It's so fascinating to learn about just, yeah. Speaking up for yourself and asking for accommodations to be successful. You have to be your biggest advocate when you show up for work and you, you won't get help unless you ask for it. Speaker 1 00:53:17 Absolutely. And one of the things that, uh, to keep in mind too, about the, uh, about the ADA is that it engaging in an interactive process, a discussion around accommodations, and that I think could be an important thing because when we go into the process and when you go into any process, it's helpful. I think to not necessarily know the answer, that's going to come out of it at the end, it's important to go in with some ideas, but let's figure out what kind of here's what I think will help me do this. I'm open to other things that will help me get to that same result. Let's, let's figure, let's figure this out. Let's talk with other resources. Let's talk with other people. Let's figure out what has worked and let's have that discussion and have that community. And I think that's also one of those big benefits of all of the, the increase in social media and those communities around people with disabilities is that we have access to a lot more people who fought these battles before and have tried some of this stuff and can help with those resources a hundred percent. Speaker 1 00:54:24 And Speaker 2 00:54:25 Yeah, I would say having an inactive Facebook communities or Twitter communities, or whatever, social media that you're on, even email newsletters, pen pals, it's just incredible to be able to share best practices. Strategy is, and just learn how other people are doing it, fighting for change, or just figured out a life hack that they want to share. Where do you feel that we need to go next in terms of just accommodations ADA, but what does a future for you look like if it could be perfect? Speaker 1 00:54:59 I think what I'm looking at is more, it's a broader outreach. It's one of the things that we struggle with, and a lot of folks struggle with is when we look at the broader economic challenges that people with disabilities live with and the opportunities, there's a lot of people who are not living the life they could because they're denied economic opportunities or social opportunities, because, well, there's a lack of research there's ableism to contend with and a lot of organizations, but there's also a lot of internal internalized ableism. And when we start looking at some of the bigger challenges that are out there, we start looking at challenges around depression and other mental illnesses, for lack of a better term there. And the line between a mental disability and a physical disability is a heck of a lot fuzzier that many people feel post-stroke depression is a huge issue. Speaker 1 00:56:12 Many people struggle with. And if you can't get past that, if you can't get out and talk to folks about it, if you can't get treatment for it, then that's going to impact your recovery. That's going to impact how willing you are to go out and look for accommodations, to look for work or even, or not, not saying everybody has to be an economic entity to be a value, but to go out and live the life that you want. It's when you sit down, it's when you stop doing anything that you're going to deteriorate even faster. What I always like to say is, you know, when we talk about things like positive mental attitude and all that stuff, that stuff's really important, but it's not most important. I found an action oriented attitude is most important and it's not enough. The right attitude is necessary for recovery and for Lee and for going on, but it is not sufficient. You have to have the other tools, the health, the resources, to be able to put that into action and being able to work more with de-stigmatize. Some of the conversations around mental health is probably the biggest area that we need to go to in social life, as well as in corporate life and professional life. Wow. I think we'll leave it there. Speaker 0 00:57:36 Cause that was super powerful bill. It was incredible. Just so engaging, talking with you, I feel like we could talk for hours, all these different social issues and what can be done and what should be done for the future of people with disabilities and advocacy in general, just given so many great nuggets of information from life facts, to workplace accommodations, to stroke recovery, and being a survivor. So hats off to you and thank you so much for being here Speaker 1 00:58:07 Has been a lot of fun. Thank you. Alright, take care. Thank you, friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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