Episode 10: Don't Throw Me Away!

In this episode Luis & I discuss some things you may face living as an adult with Cerebral Palsy and what it is like for us. So Come Roll With Us!!!!

Transcript

(Instrumental Music)

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(Instrumental Music & Singing) Queensss On A Roll

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(Instrumental Music & Singing) Yeahh Heyyy Queens On A Roll

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(Instrumental Music & Singing) Ooooo who Queens On A Roll

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(Instrumental Music & Singing) Powerful Queens On A Roll

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(Instrumental Music & Singing) Queensssss

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(Instrumental Music & Singing) Oooo who Queensss

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(Instrumental Music, Singing & Bell Chiming) Powerful Queens

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Hey, everyone, and welcome back to

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Queens On A Roll podcast.

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This is Latavia here and I have my

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very best friend Luis with me here again. Hola.

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I'm back, i'm back for another episode.

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Okay, so on today's episode, we're going to talk about

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adults and living with CP as an adult. You ready?

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I'm ready.

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All right, let's roll.

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(Instrumental Music)

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So what we're going to talk about

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first is conditions in adults with CP.

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Now, keep in mind and this is like one of my

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biggest pet peeves, they don't have any information out here, guys,

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what it's like living as an adult with CP.

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So the information that we did find

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is courtesy of the cerebralpalsy.org website, and

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they are a great resource as well.

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So some of the conditions you can

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see as an adult is premature aging.

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And that typically happens because we don't move around

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a lot, we don't get up a lot.

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It's not constant as it would be for able body person.

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So muscles get weaker, things get tighter,

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and so we tend to age faster

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just because we live a sedentary lifestyle.

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And that just means we sit down a lot.

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Now, let me be clear.

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When she says that we're aging, it doesn't mean that

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we're like 14, 15 year olds with wrinkles on our face

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and white hair growing at a very young age.

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No, it definitely doesn't mean that because a lot of

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people tell me that I don't look my age.

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So some conditions that you can see

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in some adults with CP is some

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walking difficulties or swallowing difficulties.

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And some of us just may have walking

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difficulties because as we get older, we tend

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to have a hard time moving around.

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It just takes longer and it's a lot harder.

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So you may see that you can see swallowing difficulties

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maybe, because our muscles in our mouth gets tighter.

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And this could probably generally happen

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for people who have spastic quadriplegia,

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because quadriplegia affects the whole body.

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So it may happen in those people with CP,

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and it's just that the mouth gets tighter.

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I think I escaped that part because I work as

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a speech therapist, so I constantly have to keep talking.

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So that kind of keeps those muscles loose

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So are you saying that talking more

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would help those mouth muscles loosen?

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Yeah, I'm saying that for some people, exercising

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and talking, like because if we're exercising our muscles,

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that keeps us loose and limber

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So, yeah, talking for us who

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has quadriplegia actually does help because

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we're keeping those mouth muscles exercised.

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So you heard it guys with CP, if you feel

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tightness in your mouth, make sure you talk a lot.

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Don't ever let anyone say that you talk

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a lot because you're talking for your health.

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Definitely.

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I think that was a public service announcement, guys.

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(It's a public service annoincement sound effect)

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(Delayed Beat Instrumental)

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So you can also see entrapments, which they're

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most likely nerve entrapments, and that's when the

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nerve becomes compressed or entrapped between two other

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structures in the body, usually the nerve is

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compressed between a ligament and a bone.

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So far, I haven't had to experience that.

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But that sounds very painful.

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It does indeed.

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I'm hoping that, that part of CP

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doesn't affect me at any point.

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(Tumbling downstairs sound effect)

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Another condition you can see in adults with

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CP, or for some, is post impairment syndrome.

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And this often goes misdiagnosed because it

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corresponds to a lot of CP symptoms.

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So a lot of doctors miss it.

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So it's basically when you have weakness due

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to muscle abnormalities or bone deformities or overuse

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syndromes or arthritis, and it's increased pain, and

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you have fatigue or repetitive strain injuries, these

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strain injuries, are repetitive strain injuries are like transfer.

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Just do things over and over again.

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Yeah, and we tend to do things over and

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over because once we have a system for something

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like transferring or putting on our shirt, that's the

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way we stay putting on our shirt or we

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stay transferring because it's just easier.

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(Instrumental Music)

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So some other things that adults with CP deal with

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is mental health issues such as depression or anxiety.

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Unfortunately, there is not much research

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done for adults with CP.

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However, there are studies that show that

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CP affect the autonomic nervous system.

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Yeah, and that's just basically how

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our body controls, like body temperature,

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blood pressure, all those internal things.

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So recently, or I shouldn't say recently, because I've been struggling

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with a high heart rate since I was a baby, my

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heart rate can run in the 130s, 120s, 140s, wow, that's fast.

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Yeah, that definitely is fast.

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But you know what the funny thing is?

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I don't feel it at all.

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It just feels like a normal beat,

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which it is a normal beat.

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I don't skip beats.

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It's not irregular. It's just fast.

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So my doctor was concerned about it because

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he's like, you're getting older now, and if

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your heart keeps racing that fast, then you

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can have a heart attack and possibly expire.

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So he put me on high blood pressure medicine

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called Carvedilol, and it also controls your high blood

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pressure, but controls your heart rate as well.

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Still, it's supposed to slow down my

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heart rate and make it okay.

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So I'm going to start taking that medicine.

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But I've always struggled with that from a baby.

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So what are other things you can do for a

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person that has a high heart rate such as yours?

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How can you make it lower?

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I think it varies.

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Like, for me, if I exercise

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interestingly, it will go down.

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So it will be a normal heart rate, a

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normal blood pressure, but as long as I stay

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sitting and I'm not active, then I'll have a

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slightly elevated blood pressure and a fast heart rate.

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So I noticed that if I

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exercise, everything will be normal.

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So that is pretty much the complete opposite

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of an able body person, because when they

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exercise, their heart rate goes up, but when

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they're stationary, their heart rate goes down.

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Yeah, the complete opposite.

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And I really don't know why.

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I can only speculate that.

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Maybe it's because talking and moving around and

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doing little tasks are exerting for us.

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So you know any tasks that you do can raise your blood pressure.

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Anything can raise it.

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So I just think because I'm exerting more

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energy, that's probably why it stays elevated.

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But I'm not sure they should really do more research.

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Yeah, they definitely should.

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There is research that some babies born with

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CP can also struggle with a low heart

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rate and a low blood pressure as well.

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And CP might affect body temperature

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as well, controlling your body temperature.

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That is interesting because I've noticed, especially since I

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was a teenager, that part of my left side

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of my body would be cold when the other

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half of my body is really hot.

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So I never knew why it would be that

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way, but I guess that would answer that.

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(Stair climbing sound effect)

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There's another recent study out there that

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suggests that they need to look into

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more about CP and kidney failure.

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This study says that the way they usually measure

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kidney function, which is through your creatine level, is

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not the proper way to measure it for us

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because Creatine level goes on muscle mass.

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And so because we constantly have low muscle

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mass, our creatine levels will always show up

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as low, which is what you want.

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You want a low creatine level that

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shows that your kidneys are functioning fine.

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If it's too high, then you

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have trouble with your kidneys.

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So we're always going to show low creatine

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levels just because our muscle mass is lower.

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But that doesn't necessarily mean that our kidneys

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are not functioning, but they haven't figured out

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what they should do for us yet.

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That study is still ongoing, but

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I thought that was interesting.

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Very interesting.

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So even though there's not enough research, guys, about

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living as an adult with CP, I have noticed

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some things that has been occurring to me that

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I would like to share with you guys.

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So here it goes.

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(Instrumental Music)

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(Story Time Sound Effect)

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So my mom noticed that I have been snoring lately,

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and I shouldn't be because I had my adenoids

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and tonsils removed when I was a baby.

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So that's usually what causes your snoring,

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if any of those structures are enlarged.

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But I had them removed, so there was

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no reason why I should be snoring.

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So my mom was like, I'm really concerned about it.

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I was like, It's not that big of a deal.

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It's a baby snore.

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I'm not going back to the doctor.

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She was like, I think you should go.

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So she scheduled an appointment for me to go to an ENT.

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I went, and he said to me, oh, I

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think the reason why you're snoring is, one, you're

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suffering from a little bit of acid reflux.

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So some food was showing that it

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comes back up in my throat sometimes.

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And I noticed that when your muscles

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are relaxed, your pharynx closes about 30%.

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So that means when I'm going to sleep at

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night, my body is relaxing too much till it

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closes off my airway a little bit.

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So I'm only breathing at 70%.

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So I thought, wow, is there any

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way that I could stop this? He's like, no.

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Sometimes it just happens in people with CP so and

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it can get progressively worse the older you get.

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So he just told me for now to sleep with

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my head elevated, don't need anything after 4:00 and to

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use Flonase to help with congestion as well.

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So that's pretty interesting. And I was like, what?

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I'm probably going all the way back from when I was a

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baby because I saw an ENT when I was a baby.

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But all my issues back then were resolved.

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So my mom was like, oh, you

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don't need to see this doctor anymore.

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Keep in mind y'all that I had

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18 different doctors, so I was kind of

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glad to start slowly getting rid of some.

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But I noticed now that I might need to go

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back to the ENT doctor just to get check ups.

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(Twinkling sound)

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Another interesting thing that I found is that I have

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something that is called Hallux Valgus, which is like a

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bunion that people with CP get on their feet.

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And it doesn't actually look

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like an actual bunion, guys.

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It literally just looks like my big toe crooks over

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to the right side, so it looks like a Captain

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Hook toe, and it lays on top of all my

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other toes, which makes it difficult sometimes for me to

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walk because it pushes all the other toes down.

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And so sometimes I'm walking on my toes, which hurts.

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And the doctor, I actually went to an Orthopedic doctor

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for that, and he was telling me that the one

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thing I can do is fuse your toe bone.

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And I was like, that is out of the question.

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You are not fusing any bones because

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then that means I can't move it.

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And he was like, well, this is something

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you can do to help stop the pain. You're right.

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You won't be able to move it, but you

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barely move your toes anyway, so I don't think

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it's gonna be that much of an impact.

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And I was like, well, I still would like

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the option to be able to move my toes.

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I still would like the option to be able

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to get up on all fours on my knee.

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And when you do that, your toes bend backwards.

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So if I fuse my toe bone on my big

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toe, my big toe wouldn't be able to bend backwards.

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So I said, no, thank you.

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I don't want the surgery.

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And he said, Okay, well, if you decide that

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it's too much pain and you want to come

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back, we'll do it for you anytime.

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So that was pretty interesting.

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(Instrumental Music)

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(Fun Fact Sound Effect)

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So here is your fun fact.

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We use three to five times more energy when we walk.

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So that is why we get fatigued.

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So pretty much anything that an able bodied person

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does when they pretty much lose no energy, we

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use about five times more than that.

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We pretty much get tired easily.

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(Instrumental Music)

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So now we're going to get into what it's really

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like for us living as an adult with CP.

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I find that the services are disappearing.

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I remember when I was a kid, I can

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get anything that I asked for, any service that

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I needed, and it was right there.

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Now as an adult, I have to search

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high and low to find anything, even PT.

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I think it is ridiculous because we as adults, we're

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going to constantly need these services to help us live

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independently, and you can't find any of them at all.

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So I don't really agree with that because

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I don't know I've seen so many, like, physical therapy areas.

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So I guess it depends on

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what kind of insurance you have.

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But I've seen physical therapy, occupational therapy.

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Have you gone to receive PT services?

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Like, the places are there?

(15:56.4 - 15:59.2)

What I'm saying is you can't get the services.

(15:59.8 - 16:04.3)

So I actually have gone to get PT, but after a

(16:04.3 - 16:07.0)

few sessions, I didn't really feel like it was helping me

(16:07.0 - 16:10.4)

at all, so I just kind of stopped going. Yeah.

(16:10.5 - 16:12.6)

Why did you feel like it wasn't really helping?

(16:12.8 - 16:15.3)

Because that's another point I want to lean in on

(16:16.3 - 16:20.1)

because they were just doing stretches that I don't know,

(16:20.1 - 16:22.0)

I didn't feel because the reason I was going to

(16:22.0 - 16:25.2)

these PT appointments was for me to feel looser and

(16:25.2 - 16:27.9)

get stretches and things of that nature.

(16:28.0 - 16:29.6)

But after a few sessions, I

(16:29.6 - 16:31.8)

didn't really see any results.

(16:32.4 - 16:34.1)

I don't know if maybe I didn't really give them

(16:34.2 - 16:37.2)

much of a chance, but I don't know I just stopped going.

(16:37.3 - 16:40.1)

And I prefer just going to a regular gym.

(16:40.2 - 16:43.6)

See, you're more optimistic than I am because I tend

(16:43.6 - 16:47.4)

to feel like when I do find places that offer

(16:47.4 - 16:50.3)

PT, which is scarce, again, for me, like I say,

(16:50.3 - 16:53.2)

they are not knowledgeable in how to treat us.

(16:53.3 - 16:57.1)

So you can't find a therapist that really like specializes in

(16:57.1 - 17:00.5)

CP or knows how to treat an adult with CP?

(17:00.7 - 17:02.8)

Most of the physical therapists that I see out

(17:02.9 - 17:05.7)

there today are mainly, like, if you had a

(17:05.7 - 17:09.4)

stroke or you had a knee replacement surgery or they

(17:09.4 - 17:13.0)

are like really rehabilitation medicine, but they don't specialize

(17:13.1 - 17:15.4)

in any of the neurological conditions.

(17:15.6 - 17:17.3)

Where are those type of physical

(17:17.4 - 17:18.9)

therapists at cuz I need to know?

(17:18.9 - 17:21.7)

Because I need one and I can't find one I

(17:21.7 - 17:24.3)

mean, maybe that's the reason I stopped going, because

(17:24.4 - 17:27.9)

they didn't specialize in working with people with CP.

(17:28.4 - 17:31.8)

Yeah, and that's like the biggest problem for me.

(17:31.8 - 17:34.2)

Like, we still need these services.

(17:34.4 - 17:36.6)

Where are the services?

(17:36.7 - 17:38.6)

I had a hard time finding a

(17:38.6 - 17:42.1)

physiatrist because mostly you can only find

(17:42.2 - 17:44.8)

physiatrist that want to work with pediatrics.

(17:44.9 - 17:46.8)

And I don't really know what the reason is

(17:46.9 - 17:50.0)

why the services for adults seem to be disappearing.

(17:50.2 - 17:53.2)

But it's like I literally feel lost.

(17:53.3 - 17:55.2)

In the sauce, you can't find anything.

(17:55.4 - 17:57.8)

And then they always tell us, like, oh, you need

(17:57.8 - 18:01.0)

to make sure you stay exercised, you stay limber, because

(18:01.1 - 18:03.3)

that's what's going to help you maintain what you have.

(18:03.4 - 18:07.2)

Now, no, CP is not a progressive disease, right?

(18:07.3 - 18:08.6)

And that's what they always tell us.

(18:08.6 - 18:09.9)

It's not a progressive disease.

(18:09.9 - 18:12.1)

But it does get worse over time, right?

(18:12.2 - 18:14.9)

Actually, I asked my doctor this the other day,

(18:14.9 - 18:17.0)

and I said to her, you guys say it's

(18:17.0 - 18:19.9)

not a progressive disease, but as I age, I'm

(18:19.9 - 18:23.1)

starting to notice things that I didn't have before.

(18:23.2 - 18:25.4)

And she's like, we say it's non progressive

(18:25.5 - 18:28.7)

because the brain injury doesn't change, but because

(18:28.8 - 18:31.4)

it has to deal with muscular and skeletal

(18:31.4 - 18:34.9)

structures, things will happen and things will change.

(18:35.1 - 18:36.5)

I said, Okay, I get that,

(18:36.6 - 18:38.2)

but then where are the services?

(18:38.3 - 18:40.0)

Please point me in the direction of

(18:40.0 - 18:42.6)

the services, because they are absolutely gone.

(18:42.6 - 18:44.5)

And like I said, when you do find them,

(18:44.5 - 18:46.9)

the people don't have the knowledge, and I'm just

(18:46.9 - 18:50.5)

sick of it because I need this to maintain

(18:50.6 - 18:53.2)

what I have and even gain more function.

(18:53.3 - 18:56.5)

I think that's probably why you don't see a lot,

(18:56.6 - 18:58.7)

because a lot of people want to work with children

(18:58.9 - 19:02.5)

because they feel like they absorb everything like a sponge,

(19:02.6 - 19:06.8)

and they can learn new skills and you can help

(19:06.8 - 19:09.1)

them be more independent from that point.

(19:09.3 - 19:12.2)

But adults, we can also learn new skills.

(19:12.2 - 19:15.5)

Like, I've learned a ton of new skills in my adult

(19:15.6 - 19:18.6)

life, so I feel like that's not even a valid argument.

(19:18.7 - 19:21.9)

And again, I'm just saying this from my perspective,

(19:22.0 - 19:24.9)

but I just don't think that's a valid argument.

(19:25.1 - 19:27.7)

All right, so my disability community,

(19:27.9 - 19:29.6)

let me know in the comments.

(19:30.5 - 19:34.2)

Where do you go for your PT or even your OT?

(19:34.3 - 19:36.4)

Just let us know. Yeah.

(19:36.4 - 19:39.0)

And do you find it difficult to find services?

(19:39.1 - 19:40.6)

Because, like Luis said, he doesn't

(19:40.7 - 19:42.1)

find it difficult at all.

(19:42.2 - 19:43.6)

But I definitely do.

(19:43.7 - 19:45.3)

I definitely find it difficult.

(19:45.5 - 19:49.5)

So let us know if you find it difficult, because if

(19:49.6 - 19:51.9)

you do, then we need to start speaking up and speaking

(19:51.9 - 19:54.3)

out a little bit more about what's going on.

(19:54.5 - 19:58.0)

Actually, I wrote a poem that corresponds

(19:58.0 - 20:00.3)

to like how I've been feeling lately, and

(20:00.3 - 20:02.4)

it's actually called Don't Throw Me Away.

(20:02.5 - 20:04.2)

So I'm going to read it.

(20:04.4 - 20:31.2)

(Instrumental Music)

(20:31.2 - 20:33.6)

They say, as you age, you will age much

(20:33.6 - 20:36.7)

faster than most because of a sedentary lifestyle.

(20:36.9 - 20:39.6)

So they say stay ahead of it by keeping active.

(20:39.7 - 20:42.7)

But then why are services inactive for adults?

(20:42.8 - 20:45.7)

They say exercise is key, but then help me.

(20:45.8 - 20:47.2)

Give me the services I need

(20:47.2 - 20:48.7)

to live with this disability.

(20:48.9 - 20:50.3)

Don't throw me away.

(20:50.4 - 20:52.4)

I feel like I'm in a bond because I

(20:52.4 - 20:54.6)

looked high and low for services to help me.

(20:54.7 - 20:57.2)

But it feels like the world has said leave her be

(20:57.3 - 21:00.4)

She's an adult now, but don't throw me away.

(21:00.5 - 21:03.0)

When I was a kid, any and everything was available to

(21:03.0 - 21:05.8)

me but now that I'm an adult, that isn't the case.

(21:05.9 - 21:07.6)

Everything is gone in a haste.

(21:07.7 - 21:10.5)

But why, when it is said that we need PT,

(21:10.5 - 21:14.3)

OT, speech, orthopedic and a physiatrist for a lifetime?

(21:14.4 - 21:16.1)

But shoot now to find these

(21:16.1 - 21:18.5)

basic necessities is full of stress.

(21:18.6 - 21:19.7)

I need a rest.

(21:19.8 - 21:22.9)

Don't throw me away we need these things to maintain

(21:23.0 - 21:25.8)

because as you get older, you can bet things change.

(21:25.9 - 21:28.5)

Take it from me, you can't just let things be.

(21:28.6 - 21:30.8)

Body gets weaker, body gets stiffer.

(21:30.9 - 21:33.3)

So don't throw me away because that child

(21:33.3 - 21:35.4)

becomes an adult and the same way I

(21:35.4 - 21:37.7)

needed the services then, I need them now.

(21:37.8 - 21:39.3)

So don't throw me away.

(21:39.4 - 21:48.4)

(Clapping Sound)

(21:48.4 - 21:50.6)

That is amazing. I loved it.

(21:50.7 - 21:52.9)

So, yes, where are those services?

(21:53.1 - 21:54.2)

We need them.

(21:54.6 - 22:24.0)

(Instrumental Music)

(22:24.0 - 22:27.0)

All right, so that's all we have for you guys today.

(22:27.3 - 22:29.2)

Thank you so much for listening.

(22:29.3 - 22:31.3)

Thank you so much for sharing.

(22:31.7 - 22:33.4)

You guys have been amazing.

(22:33.8 - 22:36.5)

If you want to subscribe, hit the plus button in

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the left hand corner to subscribe to our show.

(22:39.2 - 22:41.2)

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(23:12.4 - 23:17.2)

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