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CLASSIC From Double Vision To Advocacy: Living With Ataxia · When Life Gives You Lemons

• 0:00
  SPEAKER_02: Welcome to our podcast when life gets you lemons.
• 0:04
  SPEAKER_02: I'm Kevin Henry, and my partner in crime and wife is Palmy Henry.
• 0:11
  SPEAKER_02: I have a rare disease known as spinocellar ataxia, which is a neuromuscular disease that's left being mobility challenge, as well as with a speech impediment and noise-induced anxiety.
• 0:29
  SPEAKER_00: Living with these disabilities, we have created some helpful hints and life lessons that we'd like to share and that have made our life possible.
• 0:37
  SPEAKER_00: We consider ourselves disability advocates and intend to spotlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:48
  SPEAKER_00: So, hi, welcome to When Life Gives You Lemons podcast and Making the Lemonade YouTube channel.
• 0:57
  SPEAKER_00: Can you believe it's been this is our second year?
• 1:00
  SPEAKER_02: I can't believe that the first year went quickly, and yes, we did get better during the first year.
• 1:09
  SPEAKER_02: Because we knew absolutely nothing when we started, and uh we just basically followed a bunch of YouTube videos, which all said the same thing in common.
• 1:24
  SPEAKER_02: Just start doing it.
• 1:25
  SPEAKER_00: Yeah, the more you do it, the better you'll get.
• 1:28
  SPEAKER_00: And that we feel more comfortable doing it now.
• 1:30
  SPEAKER_00: So we're adding to our little um bundle here with the YouTube channel.
• 1:36
  SPEAKER_00: So last year we investigated a lot of the different disabilities that are out there that affect um many people.
• 1:45
  SPEAKER_00: Um and we went through that.
• 1:47
  SPEAKER_00: But this year we thought we'd take a little different turn and we're gonna introduce you a little bit more to Kevin.
• 1:52
  SPEAKER_00: Um Kevin has been disabled for about 27 years.
• 1:57
  SPEAKER_00: He and we're gonna go into 10 questions that kind of delves into how it started, what what happened, and you'll see as the questions go along.
• 2:07
  SPEAKER_00: But welcome, Kevin.
• 2:09
  SPEAKER_00: Hi.
• 2:11
  SPEAKER_00: All right, starting right off.
• 2:13
  SPEAKER_00: What is your diagnosis?
• 2:16
  SPEAKER_02: My diagnosis is spinal cell roller ataxia, unknown, because most are known.
• 2:25
  SPEAKER_00: But uh determined known.
• 2:29
  unknown: How are they known?
• 2:30
  SPEAKER_02: Early on in the diagnostic process, the very first branch of the tree is hereditary or episodic, I believe they call it now, sporadicnosis.
• 2:50
  SPEAKER_02: But anyway, the hereditary is you passed on by your family.
• 2:57
  SPEAKER_02: And uh I have no other family members with this condition yet.
• 3:04
  SPEAKER_00: So it's we did several DNA tests to determined that it wasn't.
• 3:11
  SPEAKER_02: We didn't really know.
• 3:12
  SPEAKER_02: We did DNA tests of the most common ones that pop up, but they were very expensive, like two thousand dollars every test.
• 3:20
  SPEAKER_02: No, they were a lot more than that.
• 3:23
  SPEAKER_00: That's what our cost was back then, yeah.
• 3:25
  SPEAKER_02: That's what our cost was.
• 3:26
  SPEAKER_02: And nowadays you can pay like I think uh a couple thousand and you get the whole chip bang.
• 3:35
  SPEAKER_00: Yeah, everything that's out there, but they're all considered um end-of-life type diagnoses, so there's really no advantage to having uh determining where it came from, is there?
• 3:48
  SPEAKER_02: Well, the advantage to knowing whether it's hereditary or not is like in my case, it's you know the opportunity is gone by already have my children.
• 4:05
  SPEAKER_02: So, you know, and I'm not sure they wanted to know that in 20 years they're gonna get what I got.
• 4:15
  SPEAKER_00: So a disability and live for the rest of their life like that.
• 4:19
  SPEAKER_00: Yeah.
• 4:19
  SPEAKER_00: I better to live your life.
• 4:21
  SPEAKER_02: Live under that shadow.
• 4:23
  SPEAKER_00: So we we considered that when we did some of the um DNA testing, whether we really actually wanted to know or not.
• 4:30
  SPEAKER_00: Because it wouldn't help his diagnosis any or his him with the symptoms, because everybody has different symptoms and they don't come on at a certain time or or schedule or anything like that.
• 4:42
  SPEAKER_00: So it's not like it would have helped him.
• 4:45
  SPEAKER_00: Um so was that what your first diagnosis was?
• 4:50
  SPEAKER_02: Well, it depends the um the first accurate one, yes.
• 4:56
  SPEAKER_02: But there are a couple other doctors who are like trying to chase down multiple sclerosis first.
• 5:07
  SPEAKER_02: But multiple sclerosis produces lesions on your brain in your cerebrum, and they couldn't find any lesions that they're like eventually.
• 5:21
  SPEAKER_02: I got to one doctor who said that's just gotta be a new variant of MS.
• 5:27
  SPEAKER_02: It doesn't cause lesions.
• 5:30
  SPEAKER_00: So we spent like three years of diagnosing.
• 5:33
  SPEAKER_00: Um he spent multiple times in the hospital where we would go to a one doctor and they would say, You need to have all these tests, and it's easier to do it in the hospital because they can get them done after hours and stuff, and you wouldn't be waiting forever for these tests to eliminate what they were trying to eliminate.
• 5:50
  SPEAKER_00: So he did the um one week here in Cape at a local hospital, and then you did one year week up in St.
• 6:01
  SPEAKER_00: Louis with another doctor, and then a third doctor who we finally was we achieved and got an accurate diagnosis.
• 6:10
  SPEAKER_00: He had another week.
• 6:11
  SPEAKER_00: So we spent about a month in hospitals figuring out, not all at one time, but throughout the time period within the three-year period trying to find a diagnosis.
• 6:21
  SPEAKER_02: So yeah, though the only weird thing about that is they basically all did the same thing, but only the last doctor knew what he's looking for.
• 6:34
  SPEAKER_02: Right.
• 6:34
  SPEAKER_02: The others were like a elimination.
• 6:39
  SPEAKER_02: You know, almost like a general practitioner or a family doctor, he's just a generic neurologist.
• 6:48
  SPEAKER_02: He'd been a neurologist for a number of years already.
• 6:52
  SPEAKER_02: The second doctor, I don't believe he'd been a neurologist that long.
• 6:58
  SPEAKER_02: And the third guy specialized in movement disorders, so you'd seen like all kinds of different neurological problems and how they progress.
• 7:12
  SPEAKER_02: So that was a guy, yeah, that it is a rare disease, but so doctors are known, are told not to look for zebras to look for no normal uh variances, and yours was very, very um very, very abnormal.
• 7:30
  SPEAKER_00: Abnormal, yeah.
• 7:31
  SPEAKER_00: So uh what symptoms uh did you get established and what happened that made you think you were ill?
• 7:39
  SPEAKER_02: The first symptom I got was double vision in 1984, and at that time I was in the US Army, and uh military doctors have a uh kind of a different mentality when it comes to treating soldiers.
• 8:02
  SPEAKER_02: It's like let's put a band-aid on whatever the problem is and get back to work.
• 8:08
  unknown: Right.
• 8:09
  SPEAKER_00: So you had double vision.
• 8:11
  SPEAKER_02: I had double vision.
• 8:12
  SPEAKER_02: He put prisons in my prescription, which forced my eyes to focus on one thing and basically took away the double vision.
• 8:24
  SPEAKER_00: Oh well, but you still had issues, like you were very clumsy.
• 8:28
  SPEAKER_02: Well, uh part of the clumsiness comes from the effects because by doing that, your brain relies on each eye independently and does its own little trigonometry calculation, how far stuff really is.
• 8:47
  SPEAKER_02: When you're looking through prisms in your glasses, it's like looking at a computer monitor.
• 8:56
  SPEAKER_02: It's a 2D image and you rely on the size that something is to tell how far away it is, which can be problematic if it's like I've actually met people who are like larger or smaller than they should be, yet perfectly proportioned, so that you don't spot their larger or smaller, and you either overestimate how far they are or underestimate depending on their size.
• 9:40
  SPEAKER_00: And how what your brain's suggesting that to the prisms.
• 9:44
  SPEAKER_00: And that was that so that happened in 1984, and you got prisms.
• 9:49
  SPEAKER_00: And then when did we have when did you start having some more issues?
• 9:53
  SPEAKER_02: In 1999, it was uh had done a very high stress job, and I went for a real stress job.
• 10:04
  SPEAKER_02: So basically, I was a security guard at a mall.
• 10:09
  SPEAKER_00: And uh by that time you had retired from the military, too.
• 10:13
  SPEAKER_00: Yeah, that's when you mean stressful job was the military job.
• 10:17
  SPEAKER_02: Yeah, it was different.
• 10:20
  SPEAKER_02: I started slurring my words, and uh I'd lose my balance every now and then.
• 10:29
  SPEAKER_00: So um he was having some issues falling down while on the job.
• 10:33
  SPEAKER_02: It was kind of like, you know, I need to explain this to the boss, otherwise they're gonna take up drinking on the job.
• 10:42
  SPEAKER_00: Yeah, because the slurring makes it sound like you're drunk.
• 10:45
  SPEAKER_00: And the um And the staggering doesn't help.
• 10:50
  SPEAKER_00: Yeah.
• 10:50
  SPEAKER_00: So those were the two main um major issues, right?
• 10:55
  SPEAKER_02: Yeah, once I saw they weren't going away, there's several things I had to do.
• 11:02
  SPEAKER_02: One, I had to let the boss know that I wasn't really drinking on the job, and I had to make an appointment with my doctor.
• 11:13
  SPEAKER_02: I planned on doing this at 40 anyway, just because that's a good age to start entering your twilight years and give a thumbs up from your doctor, so to speak.
• 11:30
  SPEAKER_02: And uh this was when I was about 39.
• 11:36
  SPEAKER_02: So it was a little bit before that, but I need to make that appointment so he could like say the yes, there is something going on, or no, it will go away after you know a couple weeks or some.
• 11:52
  SPEAKER_00: Yeah, we baffled quite a few doctors.
• 11:55
  SPEAKER_00: So yeah.
• 11:55
  SPEAKER_02: And of course, we went through a lot of doctors who said, I don't really understand what's going on, so I'll give your referral to somebody who does.
• 12:07
  SPEAKER_00: Right.
• 12:07
  SPEAKER_00: There's a lot of transferring.
• 12:09
  SPEAKER_02: Yeah.
• 12:09
  SPEAKER_00: Yeah.
• 12:10
  SPEAKER_00: And then we're also dealing with Medicare uh because you were retired, and so you had you had um TRICARES.
• 12:17
  SPEAKER_00: And then eventually um, and trying to get uh hooked up with the BA and stuff like that.
• 12:22
  SPEAKER_00: That was really hard.
• 12:23
  SPEAKER_00: Uh we ended up having to, he was denied several times.
• 12:26
  SPEAKER_00: Once we did figure out that he was disabled, was denied several times.
• 12:30
  SPEAKER_00: Um, so we eventually had to go to our senator, uh Emerson, uh Mrs.
• 12:35
  SPEAKER_00: Emerson, um, and she eventually helped us get through get the disability.
• 12:40
  SPEAKER_00: And he ended up being 100% disabled through the VA, which has helped.
• 12:45
  SPEAKER_00: It's it's uh questionable because they will not treat his actual disease, they will treat his symptoms.
• 12:53
  SPEAKER_02: To be honest about this, there is no treatment for the diseased, only the symptoms.
• 13:01
  SPEAKER_00: But things come up um because of the symptoms.
• 13:04
  SPEAKER_02: Yeah, one of the um creditary eskeys, known as Friedrich Taxia, is doing trials on the drug right now.
• 13:15
  SPEAKER_02: And they are, you know, that is by far a more serious form of a taxia than I have.
• 13:24
  SPEAKER_02: Because it affects our circulatory system a lot of times before you even have any other symptoms.
• 13:33
  SPEAKER_02: So yeah.
• 13:35
  SPEAKER_00: But they'll the me does handle like his cholesterol, his um, he's because he's in a chair and cannot exercise anymore, he does have diabetes, it is prediabetic, and we're you know, working on that.
• 13:46
  SPEAKER_00: So so all those that stuff the BA will handle.
• 13:49
  SPEAKER_00: Um, but they will not provide him with a he has to have a um a drug called clauzapan, um, which stops his tremors because he actually has muscle tremors, which are painful and also um cause other issues like falling down, um you know, hurting himself in other ways.
• 14:10
  SPEAKER_00: He's had a broken hand, he's ripped his root cuff, he uh fell falled it, fell down, hit his knees, and um had a ripped ACL.
• 14:20
  SPEAKER_00: ACL, he ripped his ACL.
• 14:21
  SPEAKER_00: So there was uh things that happened because of the disease, and those are the things you know, he they do handle a lot of that stuff.
• 14:29
  SPEAKER_00: So that's the very help.
• 14:30
  SPEAKER_00: So how do you think you've dealt with your symptoms?
• 14:34
  SPEAKER_02: I suppose you want something more than badly.
• 14:38
  SPEAKER_00: No, I don't think you've dealt badly.
• 14:40
  SPEAKER_00: And each case is individual.
• 14:42
  SPEAKER_00: I mean, everybody it's it was very um getting the diagnosis was heartwrenching when you were in your mid late 40s or early 40s.
• 14:54
  SPEAKER_00: So, and at that time, we for about five years, we were told um he would know he would only live for five years until we went further and further into the the investigation and finding the actual cause.
• 15:06
  SPEAKER_00: He was given a five-year death sentence.
• 15:08
  SPEAKER_00: That was part of the thing.
• 15:10
  SPEAKER_00: Yeah.
• 15:11
  SPEAKER_00: There's a lot of things, and she and we had a very young child, and we had two um two boys that were in their 20s.
• 15:19
  SPEAKER_00: So, you know, it limited a lot of stuff that was he was able to do with his daughter and also his his um his older sons.
• 15:29
  SPEAKER_00: Traveling was harder, communicating via the phone got difficult via the the faraway children, and you know, not going out and playing outside with our daughter.
• 15:42
  SPEAKER_02: It is very difficult to carry on a conversation on the phone when you don't speak clearly.
• 15:50
  SPEAKER_02: In our state, we have what's called 711 services basically dedicated to hearing impaired persons, but there is a uh the operators are trained in hearing carryover services that is like I can talk, but if it's somebody who won't understand what I'm saying, it's like you talk for me, yeah.
• 16:23
  SPEAKER_02: So uh but I can hear what you're saying, so yeah, it's okay.
• 16:33
  SPEAKER_02: Correct.
• 16:33
  SPEAKER_00: You've never used that though.
• 16:34
  SPEAKER_00: We tried to I've used it one time, yeah.
• 16:38
  SPEAKER_02: One time, a long time ago.
• 16:40
  unknown: Yeah.
• 16:41
  SPEAKER_00: Um, usually I'm on the conversation and can translate, or um a lot of times we just don't give out Kevin's phone number.
• 16:49
  SPEAKER_00: Um, and I my contact is the main contact for like medicals and and stuff like that.
• 16:55
  SPEAKER_00: So um honestly, I think you've dealt with the diagnosis very well.
• 17:03
  SPEAKER_00: Early on, you were able to stay out of the wheelchair for a very long time, almost 10 years, because you it you looked into other things to try to help.
• 17:14
  SPEAKER_00: You were told that if you don't use it, you will lose it.
• 17:18
  SPEAKER_02: And so you started um basically uh when I first found out that this is gonna alter the rest of my life and only get worse, and I need to use it or lose it.
• 17:33
  SPEAKER_02: I went to a martial arts, local martial arts school, who specialized in display disabled students.
• 17:45
  SPEAKER_00: Adaptation.
• 17:46
  SPEAKER_02: Yeah, adaptive martial arts is what they call it.
• 17:50
  SPEAKER_02: Because, you know, basically everybody with conditions is a little bit different.
• 17:58
  SPEAKER_02: So yes, you may be in alter, but I guarantee that if you get you know ten or so people in realtors, they're on there for different reasons, and that is not really including like your temporary diagnosis, like oh, I messed up my my knee.
• 18:22
  SPEAKER_02: So, you know, you had surgery on your knee, and you have to spend like four year four weeks in your wheelchair before you're allowed to put weight on it or something like that.
• 18:36
  unknown: Right.
• 18:36
  SPEAKER_00: And that kept you out of your out of uh he went from uh he was in a wheelchair, you started off in a wheelchair, and then you went to a uh a hand um cane cane, and then to a walker, a walker, and then eventually it got so um after a couple of falls, we determined it was best if he went back into the chair.
• 18:57
  SPEAKER_00: But he was able to stay out of it for a good 10 years, and that was because he was keeping the strength up in his um arms and legs and stuff like that.
• 19:07
  SPEAKER_00: That's very important because all his transferring is done via his arms, so you have he has to keep his arms very strong and um fit.
• 19:16
  SPEAKER_00: Um same thing with his legs in order to be able to transfer.
• 19:20
  SPEAKER_00: So, in my perspective, I thought you dealt with either.
• 19:24
  SPEAKER_00: There was there was some depression, and there's some yeah, but that's that's just normal.
• 19:31
  SPEAKER_00: You have to grieve what you've lost before you can move on.
• 19:35
  SPEAKER_02: So it was uh especially hard when they give you that five-window, five-year timeline.
• 19:45
  SPEAKER_00: You're hurrying and rushing trying to get everything.
• 19:47
  SPEAKER_00: We went and immediately went and got a will and um, you know, uh health proxies and stuff like that.
• 19:53
  SPEAKER_00: We wanted to make sure we were being responsible.
• 19:55
  SPEAKER_00: We had children that we still relied on us.
• 19:59
  SPEAKER_00: So, question here what do you wish you would have done before your diagnosis?
• 20:04
  SPEAKER_02: There's a lot of things that like one of your later questions is gonna deal with bucketless.
• 20:12
  SPEAKER_02: There's a lot of things I wanted to do that I didn't have the ability to do anymore because my mobility is limited, and in other parts of the world, it's you know, if you're in a wheelchair, you're just playing a luck.
• 20:36
  SPEAKER_00: My ways aren't aren't um handicapped exceptional.
• 20:39
  SPEAKER_02: Yeah.
• 20:40
  SPEAKER_00: So, but I meant uh I think you mentioned to me one time that you back in the 1984, you wish you had investigated maybe further.
• 20:50
  SPEAKER_02: If if I could go back in time, I would have asked the doctors here in the you know future, if you will are saying, yeah, that i doctor should have known you had double vision for a reason.
• 21:08
  SPEAKER_02: And their reason is there's usually something wrong with your your brain or your nerves.
• 21:15
  SPEAKER_02: And he should have cancelled the neurologist, but he did not, so I don't know that it would have changed anything.
• 21:24
  SPEAKER_02: Um I couldn't really tell either.
• 21:27
  SPEAKER_00: Coulda, coulda, shoulda.
• 21:28
  SPEAKER_00: That's always it is right.
• 21:30
  SPEAKER_00: Um, and what uh what do you wish you would have done after?
• 21:34
  SPEAKER_00: Was there anything you wish you'd done after your diagnosis that you didn't do?
• 21:38
  SPEAKER_02: Well, I was kind of playing it by your first always was addressed at martial arts, and so I took advantage of that.
• 21:50
  SPEAKER_02: Well, I need to exercise, you need to think about your balance and all that stuff.
• 21:56
  SPEAKER_02: Good.
• 21:57
  SPEAKER_02: So I thought that was a good round start with.
• 22:07
  SPEAKER_00: When you're um you have a disability, this movement disability, you have to think all the time what your arms and your legs and where where everything's going and what happens if it doesn't go where you think it's gonna go.
• 22:20
  SPEAKER_00: So I think the mentality of the martial arts structure.
• 22:25
  SPEAKER_02: Oh, plus uh there are some things in martial arts you just can't do.
• 22:32
  SPEAKER_02: You know, you can't no, let me rephrase that.
• 22:37
  SPEAKER_02: You can't do right, they don't look pretty, they wouldn't pass under normal standards, if you all, but you've got to know your limitations and say, okay, I can do that, but in a different way, in a different way.
• 22:56
  SPEAKER_02: I've got to either take an extra step or one of the things that uh, for example, in taekwondo, and uh when you're going from I believe it was green belt to uh blue belt, there's a form you have to learn in our school called sa chong.
• 23:23
  SPEAKER_02: The very end you balance on one foot with the other foot standing behind you, just touching your toes to the mat.
• 23:35
  SPEAKER_02: It's like that's not gonna work for me for more than like 30 seconds.
• 23:42
  SPEAKER_02: You know, I can hold it that long, but after that, I'm gonna fall on somebody, really, is you know the best way to leave.
• 23:51
  SPEAKER_00: What rank did you achieve?
• 23:53
  SPEAKER_00: Uh first on black belt.
• 23:55
  SPEAKER_00: Very good.
• 23:56
  SPEAKER_00: Yeah, very proud to be there.
• 23:58
  SPEAKER_00: It was a lot of uh figuring stuff out and and learning uh moves and stuff like that.
• 24:04
  SPEAKER_00: And I think it really has had helped you.
• 24:06
  SPEAKER_00: Even now, I think it has helped you.
• 24:07
  SPEAKER_02: Yeah, if you've uh listened to our podcast last season, Ellen Williams, who's one of the interviewees, was my instructor.
• 24:20
  SPEAKER_02: Alexis is one of my fellow students.
• 24:24
  SPEAKER_02: She was a lot younger than.
• 24:26
  SPEAKER_00: Yeah.
• 24:27
  SPEAKER_00: Okay, let's go on.
• 24:28
  SPEAKER_00: Um, what have you learned from being handicapped?
• 24:32
  SPEAKER_00: Empathy?
• 24:33
  SPEAKER_02: Empathy, because uh basically when you see a car with handicapped tags, they you don't know what's going on or who is handicapped.
• 24:46
  SPEAKER_02: So you can't just instantly judge.
• 24:50
  SPEAKER_02: Oh, you don't really deserve that handicap parking spot.
• 24:55
  SPEAKER_02: You just jumped out of your car and walked in the store.
• 25:00
  SPEAKER_02: Oh maybe they have some mental challenges or hearing issues or you know, things that aren't obvious to the naked eye.
• 25:10
  SPEAKER_02: If you don't know them, you're not in a position to judge them.
• 25:15
  SPEAKER_00: Anything else that you'd want?
• 25:17
  SPEAKER_02: Uh yeah.
• 25:20
  SPEAKER_02: Well, I've we've done a fair bit of traveling, and everywhere I go, people are really nice offering to hold something for you or hold the door open or whatever.
• 25:35
  SPEAKER_02: But kids are really in their own world, so like there's a lot of curiosity, jumping in front of you when they shouldn't, sort of thing going on or touching the you know, for especially small children.
• 25:54
  SPEAKER_02: We're uh alone with, I believe, my nephew, and he's just fascinated by the wheels on my wheelchair.
• 26:03
  SPEAKER_02: So he's like, I need to touch it, and of course I need to take a bite out of it.
• 26:13
  SPEAKER_00: That didn't work quite very well.
• 26:16
  SPEAKER_00: Um, okay, getting to that question you had for foreshadowed before.
• 26:21
  SPEAKER_00: What's on your bucket list?
• 26:24
  SPEAKER_02: It's kind of, as I explained to you, it's kind of a two-pronged approach.
• 26:31
  SPEAKER_02: I have what was on my bucket list, that uh you know there are a few things I can't do anymore.
• 26:41
  SPEAKER_02: I can't and two things come to mind.
• 26:45
  SPEAKER_02: I like history.
• 26:48
  SPEAKER_02: I believe I've already explained that before on our podcast, but uh I really would have liked to have seen the great pyramids of Giza, and then I also like the the Mayan city of Machu Picchu, and those are kind of like out of the question now.
• 27:12
  SPEAKER_00: You don't just want to go there and look, you want to actually get involved and do a little bit of exploring.
• 27:17
  SPEAKER_00: Exactly.
• 27:18
  SPEAKER_00: There's caves that you'd like to gone into and stuff like that.
• 27:22
  SPEAKER_02: You know, when you're younger, I'll say you think of, oh, I'd like to explore be the Indiana Jones, you know, notice something in the room that's never been noticed before.
• 27:39
  SPEAKER_00: But hey, I'm not vendor gorgeous, so that's kind of like uh we've done quite a bit of traveling and we've been able to uh add to um some of the bucket list stuff.
• 27:52
  SPEAKER_02: The good news is in this day and age, there's a lot of museums that put have virtual tours online that you can cruise through.
• 28:09
  SPEAKER_00: And it gives you a fair view of what's going on.
• 28:12
  SPEAKER_02: Yeah, museums are usually uh fairly safe for handicapped people.
• 28:18
  SPEAKER_00: And there's more and more stuff every day.
• 28:20
  SPEAKER_02: Yeah, there is.
• 28:21
  SPEAKER_02: Oh, we were at the Apple store the other day, and uh one of the big things that are for sale in Apple in 2024 is the virtual reality system that's built in, and uh eventually I'm sure you'll be able to get those online museum tours I mentioned via virtual reality.
• 28:53
  SPEAKER_02: You'll be seeing stuff.
• 28:56
  SPEAKER_00: I think there's some now that you can actually do.
• 29:00
  SPEAKER_00: Okay.
• 29:00
  SPEAKER_00: What do you think is the most difficult thing from your diagnosis and in dealing with your symptoms too?
• 29:07
  SPEAKER_00: What's your most tell me about the bathroom thing the other day?
• 29:16
  SPEAKER_00: The bathroom thing.
• 29:17
  SPEAKER_00: Well getting up in the middle of the night and and having to.
• 29:20
  SPEAKER_02: That was an example, dear.
• 29:21
  SPEAKER_00: Yeah.
• 29:22
  SPEAKER_02: Like that I I get what you're asking now, okay.
• 29:27
  SPEAKER_02: The example like if home be when we practice this, it's like when you have no mobility issues.
• 29:37
  SPEAKER_02: You just if you wake up in the middle of night and you have to pee, you just kind of halfway, stumble into the bathroom, flip light on, take care of your business, go back to bed, go to sleep.
• 29:54
  SPEAKER_02: No, it doesn't work that way when you're handicapped.
• 29:58
  SPEAKER_02: It's like Crap, I got to pee.
• 30:01
  SPEAKER_02: So that means I have to get in the wheelchair.
• 30:05
  SPEAKER_02: To do that, I need to first put my feet on the floor, sit on the bed, slide down, grab the footboard, stand up, turn around, put my butt in the wheelchair seat so I don't fall.
• 30:24
  SPEAKER_02: Put the arms down so I don't fall out of the wheelchair.
• 30:29
  SPEAKER_02: Get my drift.
• 30:39
  SPEAKER_02: By the time you get back, you're wide awake.
• 30:42
  SPEAKER_02: Your mind is active because you've already been using this quite a bit.
• 30:48
  SPEAKER_02: It's like, uh, I'm not gonna fall back to sleep right away, am I?
• 30:56
  SPEAKER_00: And that happens with everything you do.
• 30:58
  SPEAKER_00: So it's it's it's mind taxing.
• 31:00
  SPEAKER_00: By the end of the night, you're exhausted.
• 31:02
  SPEAKER_00: Um, because that's what he does every single day for just simple, simple um movement.
• 31:08
  SPEAKER_00: He has to think through each little process in order to get there successfully to for and the success is not to hurt himself any any further.
• 31:17
  SPEAKER_02: So or out of consideration, I also tried not to make too much of a mess when I'm doing things.
• 31:29
  SPEAKER_00: Doesn't always work, yeah.
• 31:31
  SPEAKER_00: And I wear ear uh wear earbuds in my ears.
• 31:34
  SPEAKER_00: So I don't hear him getting up anyhow.
• 31:36
  SPEAKER_00: Otherwise, I'd be wide awake too.
• 31:38
  SPEAKER_00: Because then I'm worrying, has he has he hit something, or is he gonna hurt fall down?
• 31:44
  SPEAKER_00: Or, you know, there's a lot of things with caretaking too that um you have to so I just he'll yell at me loud enough to hear if if um he does fall down and stuff.
• 31:55
  SPEAKER_02: Yeah, I'm pretty good about that.
• 31:57
  unknown: Yeah.
• 31:58
  SPEAKER_00: And our dogs are really good.
• 32:00
  SPEAKER_00: So we have two little uh chihuahuas, and one's the little nursemaid for Kevin, follows him around behind his wheelchair all the time.
• 32:08
  SPEAKER_00: And the other one, it we actually trained him early on when he was a puppy that if Kevin fell, he would come get me.
• 32:15
  SPEAKER_00: And so he runs, and if something happens with Kevin, he runs and gets me uh and tells me something's wrong, and I come back.
• 32:22
  SPEAKER_00: Say I'm downstairs or something, otherwise I would have hurt him.
• 32:25
  SPEAKER_02: But if I'm like downstairs and doing laundry or something, uh sometimes when you're downstairs, he can hear me too.
• 32:33
  SPEAKER_00: Yeah, especially if you're cussing and swearing because you're followed by a lot of profanity.
• 32:39
  SPEAKER_00: There you go.
• 32:40
  SPEAKER_02: And eventually I'll say, Pull me.
• 32:46
  SPEAKER_00: And I'm running along with two chihuahuas trying to get there.
• 32:50
  SPEAKER_00: So let's end this on a happy note here.
• 32:53
  SPEAKER_00: Um, what is your happy place?
• 32:55
  SPEAKER_00: Where do you go?
• 32:56
  SPEAKER_00: Because there's a lot of stress in your life.
• 32:58
  SPEAKER_02: There are two answers to that.
• 33:00
  SPEAKER_02: One is the mental thing.
• 33:05
  SPEAKER_02: I can be on the phone with a not understanding person, I cannot communicate with you very well, I'm having problems saying the words I need to say, so you'll understand my problem, or I spend 20 minutes trying to go through an automated venue who won't understand me.
• 33:31
  SPEAKER_02: So it's like by the time I actually talk to a live human being, I'm stressed out.
• 33:39
  SPEAKER_02: I'm like angry, irritable.
• 33:42
  SPEAKER_02: It's short-tempered.
• 33:44
  SPEAKER_02: Yeah.
• 33:45
  SPEAKER_02: For those things, I just kind of close my eyes and think of basically memories, good good things that happened to be in life.
• 33:55
  SPEAKER_02: Give me one.
• 33:56
  SPEAKER_02: Like my family, my kids, my young uh night sure, and it's always coming to think about things that went well, but we've had tropes where things didn't go well.
• 34:12
  SPEAKER_02: So I tried not to think about those because that'll get me even more irritated.
• 34:19
  SPEAKER_00: We have lots of happy times though.
• 34:22
  SPEAKER_02: Physically, the best release for anger is usually a commonly exercise.
• 34:30
  SPEAKER_02: Well, I'm not really in a position to exercise as much as I used to.
• 34:38
  SPEAKER_02: And I used to uh when I exercised via martial arts, they used to accommodate that stress physically.
• 34:50
  SPEAKER_02: But lately I've been looking into like charioga to chair tai chi, just different things that yes, I remain seated, but I still get some exercise benefit out of because it's not just the exercise, it's the part that it relieves, uh gives you oxyco uh coat.
• 35:14
  SPEAKER_00: What is it?
• 35:15
  SPEAKER_00: Oxyco, whatever it is.
• 35:17
  SPEAKER_00: It's not oxycoat.
• 35:20
  SPEAKER_00: You wish it was that, yeah.
• 35:21
  SPEAKER_00: Um, but anyways, it releases happy hormones and stuff like that.
• 35:25
  SPEAKER_00: So um he needs to do more of that though.
• 35:28
  SPEAKER_00: So I want him to work out with me, and he will he we did it up to about two years ago, and then um he's not meant because it's such a hassle to get in the car and out of the car and stuff like that for him.
• 35:43
  SPEAKER_00: I'm sure that's what it is.
• 35:44
  SPEAKER_02: So it is.
• 35:45
  SPEAKER_02: Yeah.
• 35:46
  SPEAKER_00: It's not the dying also people looking at you while you're in the wheelchair and I don't usually mind that, no.
• 35:57
  SPEAKER_02: One of my jobs in the army was training other people.
• 36:03
  SPEAKER_02: And uh early on, you've heard of late stage freight getting tongue-tied.
• 36:10
  SPEAKER_02: It didn't matter how many people were out there listening to what I was saying, it never really bothered me at a getting nervous about it unless there was somebody I knew in the audience and value their perception of me.
• 36:30
  SPEAKER_02: That bothers me.
• 36:33
  SPEAKER_02: It bothers me if I had to uh explain something to Pomby because it matters out what she thinks to me, what she thinks about me.
• 36:44
  SPEAKER_02: And same for my child, yeah, parents' children and dogs, I guess.
• 36:52
  unknown: Yeah.
• 36:53
  SPEAKER_00: Okay, you said there was that was your mental happy place.
• 36:57
  SPEAKER_00: What's your is the other one physical?
• 36:59
  SPEAKER_02: Well, in a way, yes, because if I'm like uh say when we went to the Apple store at the problem with splendid, it was a problem with Palmy's phone, so you know I'm just a spectator, so I didn't have too much stress about that.
• 37:20
  SPEAKER_02: But were at my phone and I was trying to explain the problem, or for example, some with my computer.
• 37:31
  SPEAKER_02: I'm trying to explain over the phone to uh the manufacturer what is wrong.
• 37:39
  SPEAKER_02: It just puts you in a kind of weird head space.
• 37:45
  SPEAKER_00: It's irritated, but so what do you do when you're it's a physical same thing?
• 37:53
  SPEAKER_02: Think of happy places we've been or Well no, I like to have a little fun.
• 37:58
  SPEAKER_00: Oh yes, I remember this.
• 38:00
  SPEAKER_00: Go ahead.
• 38:01
  SPEAKER_00: Uh Kevin's sarcastic, by the way.
• 38:04
  SPEAKER_00: He has a very weird uh sense of humor, sarcastic sense of humor.
• 38:09
  SPEAKER_00: So you have to know that.
• 38:11
  SPEAKER_00: Now go.
• 38:12
  SPEAKER_00: I'll understand it now.
• 38:14
  SPEAKER_02: I'll give you an example, okay?
• 38:17
  SPEAKER_02: Uh pro long time I was doing physical therapy on this hand.
• 38:23
  SPEAKER_00: Because he broke his hand and he had to have a surgery on it.
• 38:27
  SPEAKER_02: But there's only one lady who does physical therapy specializing on the hands.
• 38:39
  SPEAKER_02: In our area, yeah.
• 38:41
  SPEAKER_02: It's you know, something involves physical therapy on the hands.
• 38:47
  SPEAKER_02: Every doctor in our area calls us a lazy.
• 38:52
  SPEAKER_00: Well, and he had extensive uh problems with that hand with that hand for a long time.
• 38:57
  SPEAKER_00: So he's been going to her for about three years.
• 38:59
  SPEAKER_00: So you have to understand the relationship there.
• 39:01
  SPEAKER_00: Yeah.
• 39:02
  SPEAKER_02: Yeah, she's she gets me, she gets my weird sense of humor and all that.
• 39:10
  SPEAKER_02: But part of her job as the one and only hand specialist is our local university, is Southeast Missouri State University.
• 39:24
  SPEAKER_02: And they have a physical therapy uh, I want to say program.
• 39:32
  SPEAKER_02: It might just be a class, I don't know.
• 39:35
  SPEAKER_02: I've never really dealt into what they'll heard, but part of that is the students have to go out and speak to various physical therapists that find out the ins and outs or you know potential problems of the field before they get into it, so to speak.
• 39:59
  SPEAKER_02: And uh one guy, I remember this, he you know, I had made a real appointment to Shadow Donna.
• 40:09
  SPEAKER_02: She was explaining things like why we put our hands in parven, why we have heat to warm up, why we do this exercise, all that.
• 40:21
  SPEAKER_02: And so we went a little bit long over a period.
• 40:27
  SPEAKER_02: And um basically the guy is just you know processing, okay, I'm learning all this stuff.
• 40:38
  SPEAKER_02: But what I really want to ask, he waited for Donna to, you know, because she was drawing behind her something.
• 40:47
  SPEAKER_02: I guess she had to tug to the lady to, you know, take care of appointments or whatever.
• 40:54
  SPEAKER_02: And uh he said, real sauce, nobody else could hear him.
• 41:00
  SPEAKER_02: Hey man, why are you in the wheelchair?
• 41:04
  SPEAKER_02: That's when I you know get really vulnerable stressed.
• 41:09
  SPEAKER_02: Well, there was this UFO and uh they tried to shoot at it, but they hit the satellite.
• 41:16
  SPEAKER_02: It came down and hit me out of the blue.
• 41:20
  SPEAKER_00: And so you like messing with people, yeah, basically.
• 41:24
  SPEAKER_00: So you never know what you what you're gonna get with Kevin.
• 41:28
  SPEAKER_00: And I believe or not, Kevin said the guy just said, oh, and walked away.
• 41:34
  SPEAKER_02: Yeah, most people kind of realize you're having little fun at the expense and the little healer.
• 41:45
  SPEAKER_02: You know, tell you to shut up or yeah, yeah.
• 41:48
  SPEAKER_00: Typically you don't do that.
• 41:50
  SPEAKER_00: So you were just frustrated from the answer's hand next to you.
• 41:53
  SPEAKER_02: And it'll let you get a little bit of stress.
• 41:58
  SPEAKER_00: Torture, you're torturing somebody else.
• 41:59
  SPEAKER_02: Leave a little stress in my case.
• 42:02
  SPEAKER_00: There you go.
• 42:04
  SPEAKER_00: All right, well, I think this calls it a podcast and uh and a YouTube channel.
• 42:09
  SPEAKER_00: Um, we will uh get back with you next month, and I'm not sure what we're gonna do next month.
• 42:16
  SPEAKER_00: Do you know?
• 42:18
  SPEAKER_02: I have a couple ideas, but we haven't talked about it.
• 42:21
  SPEAKER_02: No, okay.
• 42:22
  SPEAKER_00: Well, it'll be a surprise to you and me both.
• 42:25
  SPEAKER_00: All right.
• 42:26
  SPEAKER_00: Thank you for joining us.
• 42:33
  SPEAKER_00: We are always looking to improve the podcast, so if you want to hear a specific topic discussed, drop us an email.
• 42:41
  SPEAKER_00: Our contact information is listed on our website.
• 42:44
  SPEAKER_00: It's www.whenlife gives you lemons.knit.