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Your Heart Still Needs A Plan Even In A Wheelchair · When Life Gives You Lemons

• 0:00
  Kevin: Welcome to our podcast, When Life Gives You lemons.
• 0:04
  Kevin: I'm Kevin.
• 0:06
  Palmi: And I'm Palmi.
• 0:07
  Palmi: We consider ourselves disability advocates and intend to highlight some disability issues and things we find interesting that we frequently encounter when we're out and about.
• 0:18
  Palmi: Also, some history on disability that we find interesting.
• 0:22
  Palmi: This year we're going to include more of the interviews of the people that the disability affects.
• 0:30
  Palmi: We hope you enjoy it.
• 0:32
  Kevin: Well, hello everybody, and welcome back to our podcast, When Life Gives You Lemons.
• 0:39
  Kevin: And today we're talking about.
• 0:42
  Kevin: Well, I'm Kevin.
• 0:44
  Palmi: I'm Palmi.
• 0:45
  Palmi: And today we're talking about understanding cardiovascular risk.
• 0:51
  Palmi: When disability meets the heart.
• 0:54
  Kevin: Yeah, we're were going to uh expand that a little bit.
• 0:58
  Kevin: There's some disabilities that affect your heart.
• 1:04
  Kevin: This is just generally things that disabled people all have in common with heart problems.
• 1:15
  Kevin: So we're trying in the that vein.
• 1:18
  Kevin: We're trying to talk about how you prevent having those problems.
• 1:25
  Kevin: Because overall, um, the heart is affected by mobility, um, by muscle tone, by metal metabolism, and by the nervous system.
• 1:36
  Kevin: So um it's good to be empowered and have information and have accessibility to the information so you can know these things before this starts affecting you.
• 1:50
  Kevin: Well, plus from my own personal experience, I have Ataxia.
• 1:58
  Kevin: There's a form of Ataxia called Friedrich's ataxia that affects your heart directly.
• 2:07
  Kevin: That's one of the first things you see.
• 2:11
  Kevin: So I'm old, I don't have any problems that I know of with my heart.
• 2:17
  Kevin: So I'm gonna say I don't have Friedrich's ataxia.
• 2:23
  Kevin: Plus, that is also one of the tests I took before I found out that they were so darned expensive, and insurance didn't cover them.
• 2:34
  Kevin: The genetic testing is what he's talking about.
• 2:38
  Kevin: The genetic testing, sorry.
• 2:40
  Kevin: Yeah.
• 2:41
  Kevin: Um, so neuromuscular conditions like um muscular dystrophy, uh, cerebral palsy, spinal cord uh injuries, all these affect the heart because they weaken the muscle and reduce mobility um of circulation and cardiovascular workload.
• 3:01
  Kevin: Um let me expand on that a little bit before we move on here.
• 3:06
  Kevin: Okay.
• 3:07
  Kevin: And now it's got a couple risk are each to talk about, but uh if you look at the examples she just gave, vascular dystrophy, cerebral palsy, and spinal cord injuries, depending on the severity and the location of your spinal cord injury, or what type of muscular dystrophy or how severe your cerebral palsy is, you're probably going to end up at some point in your life in a wheelchair.
• 3:47
  Kevin: What happens when you're in a wheelchair is you have less risk of falling, which is great, but you also stop using the some of the biggest muscles in your arm, heart in your body, so your heart doesn't have to work as hard.
• 4:07
  Kevin: And so when people talk about aerobic exercise, that basically gets your heart pumping, and uh us being wheelchair-belled is makes aerobic exercise kind of uh impossible, different, not impossible, just we gotta go about it differently.
• 4:35
  Kevin: The smaller muscle, if you look at it makes common sense if you look at your arm.
• 4:42
  Kevin: Most people's arms are not as big as their legs, right?
• 4:48
  Kevin: That's because you have a lot of muscle and your legs.
• 4:53
  Kevin: You learn how to crawl, how to walk, and if suddenly the walking slash running slash jogging part is gone, yeah, that's just gonna uh affect your circulation all around.
• 5:14
  Palmi: Right.
• 5:14
  Palmi: Uh hence the uh blood clotting they're talking about.
• 5:21
  Kevin: Lack of circulation, which is blood the risk of clots, right?
• 5:25
  Kevin: Well, that's why they always tell people to elevate their legs periodically.
• 5:32
  Kevin: If you're like, ambulatory wheelchair user, get up for you know a few minutes every hour or something like that.
• 5:45
  Kevin: So you're basically giving your body and your heart and your circulatory system overall uh different uh conditions to work through.
• 6:01
  Kevin: I don't know about everybody else, but there are times when I just get lazy and I forget completely the stand-up or VR, but uh try to make up for it later.
• 6:17
  Kevin: Or they do a lot of uh programs nowadays have been adapted for disabled people, they have adapted programs for a lot of things, just uh from adapted gym routines to adaptive tai chi or yoga, and those adapted things will help because you're using your heart and you're using big muscles, you're getting your heart pumping using you may not be using your leg, but you're using your core a lot more than you would have before.
• 7:07
  Kevin: So when you end up sore in different places, that would be a lie.
• 7:13
  Kevin: Those are muscles you just haven't been using so much before.
• 7:18
  Kevin: You're not used to using.
• 7:21
  Kevin: Okay, I'm sorry.
• 7:23
  Kevin: Uh no, dear, go ahead.
• 7:26
  Palmi: No, you're fine.
• 7:27
  Palmi: Um, so automatic um nervous system disorders like automatic dysfunctions, including um POTS, explains how the automatic system regulates the heart rate and blood pressure symptoms.
• 7:43
  Palmi: Listeners may recognize as fading tachycardia, blood pressure swings, uh, congenital or genetic disorders.
• 7:52
  Palmi: Um, congenital conditions are such as um Down syndrome, Turner syndrome, and Mar fan syndrome.
• 8:01
  Palmi: Discuss destruction destructional uh structural heart defects or aortic issues, highlight early detection, lifelong monitoring, um, disabilities with um hormonal effects or metabolic uh uh effects, uh metabolic disorders like Prader Willis syndrome.
• 8:32
  Palmi: Okay, folks.
• 8:33
  Palmi: You know how bad we are at the medical terms sometimes.
• 8:39
  Palmi: The second category of what we're bad at are names.
• 8:44
  Palmi: When there's throwing names out just mixed in with medical terms, all beds are off.
• 8:52
  Palmi: Good luck.
• 8:53
  Kevin: So how metabolic weight restoration and um hormones influences he cardiovascular risks like links to diabetes, cholesterol, and hypertension.
• 9:10
  Kevin: Uh there's also chronic inflammation and autoimmune disorders such as lupus, um rheumatoid arthritis, and sorry, arthritis, the roles of chronic arthritis in heart attacks and stroke risks.
• 9:28
  Kevin: Why inflammation is the cardiovascular stressor?
• 9:33
  Kevin: Mobility limits disabilities, limited mobility for amputees, severe arthritic or chronic pain, uh, a sedentary life uh increases your blood pressure, reduces um, like Kevin said, causes clot formations, and is um strategic for safe movement and cardiac um protection.
• 10:02
  Kevin: Indirect disability that still influences heart health is sleep apnea and its effects to hypertension, mental health disabilities, and chronic stress, uh intelligent dis intel what is that indirect disabilities that still in fact uh influential influence heart health.
• 10:26
  Kevin: Yes, I know where you were, I don't know what word you were trying to say.
• 10:35
  Kevin: Intellectual disabilities and barriers to early diagnosis.
• 10:41
  Palmi: Um okay.
• 10:43
  Palmi: It says here SSA recognized cardiovascular dystrophies.
• 10:50
  Palmi: I think what they mean by that, again, I'm kind of guessing, but in the United States we have what is called the Social Security disability payments.
• 11:07
  Palmi: These are what the Social Security Administration is going to recognize as a cardiovascular disability in their disability pay scale, as of right now, or nowadays, kind of deal.
• 11:28
  Palmi: Chronic heart failure, isometric heart disease, ischemic heart disease, arrhythmias, congenital heart defects, peripheral arterial disease, and how these conditions intersect with their disability.
• 11:58
  Palmi: Do you think I'm assuming that is correct?
• 12:01
  Palmi: Yeah.
• 12:03
  Kevin: That's what I'm taking away too.
• 12:04
  Palmi: Okay, gotcha.
• 12:06
  Kevin: So practical takeaways for the listener are early warning signs of uh cardiac issues, uh, lifestyle adaptations for people with disabilities, and the importance of accessibility, health care, and early monitoring.
• 12:22
  Kevin: So basically, um the earlier you establish healthy practices, um, the better off you are as far as health care, health care for your heart.
• 12:40
  Palmi: Let me stress it's important that not only is it it's part of our regular routine as far as your monitoring goes.
• 12:50
  Palmi: Um that can go with the um access to health care, uh, but it can also not be part of your access to health care.
• 13:08
  Palmi: Sometimes uh I've noticed in the past when they're doing like uh I go in for an attack say a problem, they don't take my blood pressure or they don't take my weight with cardiac systems.
• 13:28
  Palmi: You want to make sure that there's always somebody that takes your blood pressure or listens to your heart.
• 13:37
  Palmi: As of course, because that is what you're having a problem with, and you've only got one heart.
• 13:45
  Palmi: So it's not like I can wonder for a couple weeks if this is a taxia or something else.
• 13:54
  Palmi: If you're having heart problems, that needs to take priority.
• 14:01
  Kevin: Well, here I'm gonna say something though.
• 14:04
  Kevin: Um, you go to a specialist for your ataxia.
• 14:07
  Kevin: Right.
• 14:08
  Kevin: So you see a specialist for the ataxia, but you see a genuine practitioner for the rest of the stuff.
• 14:13
  Kevin: You see the VA for the rest of the stuff.
• 14:15
  Kevin: We sometimes critically think, say that the VA doesn't see you for ataxia, which they don't, but they do scan you for all the other stuff, like um your cholesterol, your height, your diabetes.
• 14:30
  Kevin: So that is protecting your heart because those are the things that would affect your heart because of your ataxia, because of your disability.
• 14:39
  Kevin: So you are taking care of your heart because you are seeing a uh a general practitioner.
• 14:44
  Kevin: So basically, you even though you have a disability, you should be seeing a general practitioner in addition to that.
• 14:53
  Palmi: Well, I am cured.
• 14:54
  Palmi: The problem is it's not always the same person.
• 14:58
  Kevin: Yeah, I know, but they still have tracking in your records and stuff.
• 15:02
  Kevin: They know what your cholesterol level is and what your diabetes um A1 A1C is.
• 15:07
  Kevin: So they are keeping track of that.
• 15:09
  Kevin: So if you for some reason your cholesterol jumped up super high at some point, um, they would be on that.
• 15:17
  Kevin: So you are keeping track of that.
• 15:19
  Kevin: You yourself are, but to our listeners, that we should advise them to have someone to track that kind of stuff in addition to whatever their disease is.
• 15:30
  Kevin: And for about the thousandth time, I'm gonna reiterate that neither one of us are doctors, and doctors are gonna, if we're telling you something contrary or that alters what your doctor says, disregard what we say.
• 15:53
  Palmi: Right.
• 15:53
  Palmi: But it's just in general health, um, general uh direction that you should have a general practitioner in addition to your whatever your your disease is that is your is put you into the wheelchair or your disability.
• 16:09
  Palmi: Only makes sense because lack of movement will cause a risk to your heart.
• 16:16
  Palmi: Yeah, it's just even if you're not in a wheelchair, if you don't have a sanitary life, they always say that you know it's a risk to your heart.
• 16:28
  Palmi: Yeah, you have to also bear in mind that the American Heart Foundation or DME will also remind you to regularly consult your physician about your heart health and to uh rethink your exercise goals for a healthy heart to maintain a healthy heart because I guess uh the short message is uh once you reach you know old age, like uh I guess say my age 65, you can't just say, okay, I'm done, I'm old, don't exercise.
• 17:27
  Palmi: You still have to exercise.
• 17:30
  Palmi: You've got to keep your organs working.
• 17:34
  Palmi: And if your organs have that attitude of, well, we're not doing anything anymore, so we can just rest now.
• 17:48
  Palmi: Uh, it's not always a good thing, especially when you're talking about your heart.
• 17:56
  Palmi: So, what happens when life gets you lemons ?
• 18:02
  Kevin: Make lemonade.
• 18:03
  Kevin: We'll see you next podcast.
• 18:06
  Palmi: Talk to you next time, folks.
• 18:08
  Palmi: Hello again, everybody.
• 18:12
  Palmi: It's Kevin.
• 18:13
  Palmi: Um, one of the things that I wanted to make sure we drove home, but we didn't specifically say, is I went back and edited this episode.
• 18:27
  Palmi: I noticed this.
• 18:29
  Palmi: A fitness program is important whether you're disabled or not.
• 18:36
  Palmi: The origin you try to take care of your heart doesn't really care that your legs there may not be in the equation.
• 18:50
  Palmi: So it's important you uh pursue those cardiovascular vascular goals we talked about.
• 19:01
  Palmi: Yeah, I also wanted to take just a few brief minutes to talk about our upcoming uh contest where we're drawing conceptually Batman being real chairs.
• 19:33
  Palmi: Okay, yeah, the way this podcast episode has progressed to this point, see a lot for chapter art.
• 19:45
  Palmi: So I want to try to incorporate everybody who enters, or does it uh in the running to win if there are a bunch of entries?
• 20:00
  Palmi: Uh they will be featured as chapter on the podcast, as well as being posted on the Facebook page that everybody can enjoy them.
• 20:14
  Palmi: And one of the things as an example I thought would be really, really cool is if we can get, for example, Pasteur Isia, who is in Kenya, sending what his kids can draw their paper possibly uh crayons.
• 20:40
  Palmi: I mean, just because the way kids work, kids' mind can work is just you know it's amazing at times.
• 20:52
  Palmi: And we want to encourage the kids to have their amazing concepts shown as well, even if they're not entering as a contest.
• 21:07
  Palmi: If you would be so kind, please uh gather your uh kids, have their draw some pictures of what the conceptualize that being, and uh send them via either Facebook or on the leave, and we'll we'll figure it out.
• 21:32
  Palmi: Uh at least give me a call and we'll talk about it if it's doable or not.
• 21:39
  Palmi: Thanks again for listening, everybody.
• 21:43
  Palmi: This is Future Kevin.
• 21:45
  Palmi: Uh after editing the podcast audio.