Queens On A Roll

Episode 7: Treatments for Cerebral Palsy

May 31, 2022 Latavia & Various Guests Season 1 Episode 7
Queens On A Roll
Episode 7: Treatments for Cerebral Palsy
Show Notes Transcript

In this episode I sit down with the woman behind the theme song of Queens On A Roll, my aunt Valerie. We discuss different non-surgical treatment options for people with Cerebral Palsy. So Come Roll with us!

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(Instrumental Music)

(00:03.5 - 00:07.5)

(Instrumental Music & Singing) Queensss On A Roll

(00:07.8 - 00:12.5)

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

(00:12.9 - 00:17.9)

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

(00:17.9 - 00:23.6)

(Instrumental Music & Singing) Powerful Queens On A Roll

(00:23.9 - 00:28.1)

(Instrumental Music & Singing) Queensssss

(00:28.4 - 00:33.3)

(Instrumental Music & Singing) Oooo who Queensss

(00:33.4 - 00:40.5)

(Instrumental Music, Singing & Bell Chiming) Powerful Queens

(00:40.5 - 00:41.2)

Hey, everyone!

(00:41.3 - 00:44.0)

And welcome back to Queens On A Roll podcast.

(00:44.1 - 00:45.7)

This is Latavia here.

(00:45.8 - 00:48.4)

And today I brought the woman behind the song

(00:48.5 - 00:52.6)

of Queens On A Roll, my Aunt Valerie.

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(Clapping sound)

(01:01.4 - 01:03.8)

Hi All! Hi, everyone!!!

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I'm so glad that y'all like

(01:05.7 - 01:08.2)

the Queens On A Roll song.

(01:08.4 - 01:11.8)

And I'm trying to work on more for that song.

(01:11.9 - 01:14.9)

So I'm grateful that y'all enjoyed it. Thank you.

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Auntie thank you.

(01:15.7 - 01:16.7)

It's been a big hit.

(01:16.8 - 01:18.4)

Everybody says they can still hear your

(01:18.5 - 01:20.2)

song even after it goes off.

(01:20.4 - 01:22.2)

So thank you for that. Today.

(01:22.3 - 01:25.9)

I brought her on because she had some questions

(01:25.9 - 01:27.8)

for me because the topic we're going to talk

(01:27.8 - 01:30.8)

about today is treatment for cerebral palsy.

(01:30.9 - 01:34.0)

And she said she always had some questions for me and she

(01:34.1 - 01:37.3)

wanted to know what it was like for me and you know me

(01:37.3 - 01:38.2)

being young at the time,

(01:38.3 - 01:40.1)

I couldn't fully articulate it.

(01:40.2 - 01:42.4)

So I said, why not do it on the podcast?

(01:42.7 - 01:45.2)

So let's roll.

(01:45.6 - 02:11.0)

(Instrumental Music)

(02:11.0 - 02:13.2)

So first we're going to talk about some

(02:13.3 - 02:17.3)

nonsurgical treatment options that will help some people

(02:17.3 - 02:20.1)

with CP to deal with the condition.

(02:20.2 - 02:24.2)

So the first is, of course, you know we all need physical,

(02:24.3 - 02:28.4)

occupational, and sometimes for some of us, speech therapy.

(02:28.5 - 02:32.2)

I needed all three just because I am

(02:32.3 - 02:34.1)

a spastic quad, like I said before.

(02:34.2 - 02:35.7)

So it affects my whole body.

(02:35.8 - 02:37.7)

So I needed speech. I needed physical.

(02:37.8 - 02:39.7)

I needed occupational currently.

(02:39.8 - 02:43.2)

Now I need more physical therapy than

(02:43.2 - 02:45.6)

anything else, which we'll get into that

(02:45.7 - 02:47.6)

because you can't find it anywhere.

(02:47.8 - 02:51.1)

The next thing that you can also do that is

(02:51.1 - 02:55.6)

a non surgical treatment option is orthotics or braces

(02:55.7 - 03:00.1)

So I've had a bunch of them in my lifetime. Amen.

(03:00.9 - 03:03.1)

I've had the AFOs

(03:03.3 - 03:06.1)

I've had the infamous A-frame.

(03:06.2 - 03:09.2)

Auntie I don't know if you remember the A-frame. Yes, I do.

(03:09.3 - 03:13.2)

It was the stick that was in the middle and

(03:13.4 - 03:16.1)

two on the side that was like a splint.

(03:16.5 - 03:22.2)

And I used to wonder how you know tolerated that.

(03:22.6 - 03:27.7)

Oh That was hard because it was in the shape of an A guys.

(03:27.8 - 03:29.4)

So it was in the shape of an A, had

(03:29.4 - 03:31.2)

a bar in the middle, like my aunt said.

(03:31.4 - 03:33.8)

And then your legs had straps.

(03:33.9 - 03:36.2)

So you have one for your kneecap, one for the

(03:36.2 - 03:38.2)

lower part of your leg, one for the thigh.

(03:38.3 - 03:40.1)

And that was on each side of your leg.

(03:40.2 - 03:43.9)

And then you had the pelvis strap so you could either sit

(03:43.9 - 03:47.4)

up with it on the floor and it would lock you in

(03:47.4 - 03:50.2)

that position so you could learn how to sit on the floor

(03:50.2 - 03:53.1)

and play on the floor, or you could lay down.

(03:53.4 - 03:57.1)

So my mom, her famous way of stretching me

(03:57.1 - 04:00.0)

was locking the pelvis in the position where I

(04:00.0 - 04:01.5)

could sit up and play on the floor.

(04:01.6 - 04:06.7)

When I tell you that was painful, wow! that was

(04:06.7 - 04:10.2)

painful because when you stretch it, honestly, feels

(04:10.3 - 04:12.9)

like something is ripping off the bone.

(04:12.9 - 04:15.5)

Like that's how tight it feels.

(04:15.6 - 04:18.0)

So it hurts so let me ask

(04:18.1 - 04:22.0)

the question not to cut you off. That's fine

(04:22.0 - 04:24.4)

When you say tight and feeling like it was

(04:24.4 - 04:27.4)

ripping off the bone, you could actually feel you

(04:27.5 - 04:30.6)

can't feel that, but you could feel the tightness

(04:30.7 - 04:33.9)

and you could feel the tendon and the muscle,

(04:34.0 - 04:36.4)

like, pushing against the stretch.

(04:36.6 - 04:39.0)

So as you stretch, you can feel

(04:39.0 - 04:42.4)

me pulling in the opposite direction.

(04:42.6 - 04:45.5)

So that's what I feel.

(04:45.6 - 04:48.2)

So even now, like, if you do what

(04:48.2 - 04:50.3)

we like to call hamstring stretches, and that's

(04:50.3 - 04:53.2)

like, literally just holding your leg up in

(04:53.2 - 04:55.4)

the air while you're holding one leg down.

(04:55.6 - 04:58.6)

I'll feel pain behind the hamstrings.

(04:58.7 - 05:02.8)

And it literally feels like my hamstring is pulling to

(05:02.8 - 05:06.1)

retract while you're still pushing for it to go up.

(05:06.2 - 05:09.8)

So it's still painful because my body wants

(05:09.8 - 05:12.2)

to go in the opposite direction of the

(05:12.2 - 05:14.2)

movement that you actually want to do.

(05:14.4 - 05:16.6)

So it is very painful.

(05:16.7 - 05:19.4)

I hated the A-frame, and you had

(05:19.4 - 05:21.5)

to sleep in it every night. Yes

(05:21.7 - 05:22.6)

Oh, my God.

(05:22.6 - 05:25.2)

Yes, I remember you couldn't roll, you arguing

(05:25.3 - 05:28.9)

with your mother, yelling and screaming.

(05:28.9 - 05:31.9)

I tell you, it was something to see.

(05:32.0 - 05:34.2)

But do you think it was all worth it now?

(05:34.3 - 05:35.1)

It was helpful.

(05:35.2 - 05:36.9)

It was helpful, definitely.

(05:37.0 - 05:38.9)

Now, as an adult, I realize

(05:38.9 - 05:41.5)

that all that stuff was very helpful.

(05:41.6 - 05:44.1)

You don't realize that as a kid, because as a kid, you're

(05:44.1 - 05:46.1)

like, Why do I have to go through all this?

(05:46.2 - 05:46.8)

I don't know.

(05:46.8 - 05:47.9)

What's the point of this?

(05:48.0 - 05:49.5)

It's not gonna be worth it.

(05:49.6 - 05:52.6)

But now that I'm an adult, I see that all those

(05:52.7 - 05:56.5)

extra therapies and all that extra time was worth it.

(05:56.6 - 05:58.7)

But it was definitely not easy.

(05:58.8 - 06:00.3)

It wasn't easy at all.

(06:00.4 - 06:02.6)

That A-frame was like, excuse my

(06:02.7 - 06:04.9)

language, but hell, like I hated it.

(06:05.0 - 06:06.5)

I hated it.

(06:06.5 - 06:10.0)

I remember Latavia when your mom went out

(06:10.1 - 06:13.2)

and bought a stroller, and your feet used

(06:13.3 - 06:16.5)

to always stick out from the stroller.

(06:16.5 - 06:19.0)

And I used to wonder what that was like for

(06:19.0 - 06:22.2)

you, how your feet used to extend straight out.

(06:22.3 - 06:25.3)

And I wondered if that was painful.

(06:25.4 - 06:27.1)

I remember you screaming.

(06:27.2 - 06:29.8)

I used to try to push your feet down,

(06:29.9 - 06:32.4)

but when I tried to push them down, I

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felt the resistance, a resistance from trying to push them down.

(06:36.9 - 06:38.4)

And I used to think, well, I don't want to

(06:38.4 - 06:41.7)

break any bones or anything like that, but I want

(06:41.7 - 06:43.2)

to know what that was like for you.

(06:43.3 - 06:46.6)

Well the resistance you felt, Auntie, was my tone.

(06:46.7 - 06:48.1)

That was my tone.

(06:48.2 - 06:50.2)

And it wasn't so much that

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it was painful, but it's uncomfortable.

(06:52.9 - 06:55.6)

So what you have to understand is that I'm

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used to being tight 24/7, 7 days a week, right?

(07:00.3 - 07:03.7)

So when something feels loose or when something

(07:03.8 - 07:07.8)

feels like not right, it is very uncomfortable.

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Like, imagine you're used to doing something

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every day a certain way, right?

(07:12.3 - 07:14.7)

And then somebody comes and switches up the routine

(07:14.7 - 07:16.6)

and says, no, no, no you got to do it this

(07:16.7 - 07:19.1)

way, because this way is better for you right.

(07:19.2 - 07:21.3)

So that's what it's like for me, right.

(07:21.4 - 07:25.3)

Even now, I still have comfortable places that I like

(07:25.3 - 07:27.9)

to sit, comfortable ways that I like to sit.

(07:28.0 - 07:30.9)

And mom will be like, no, you can't sit like that. Oh yes

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I still hear it today.

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You can't sit like that.

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That's not right.

(07:35.4 - 07:36.8)

That's not the right posture.

(07:36.9 - 07:38.3)

You're going to create more problems

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for yourself in the long run.

(07:39.9 - 07:43.3)

But it's not that I'm meaning to go that way. Right.

(07:43.3 - 07:46.0)

But your tight muscles is pulling in

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one opposite direction because, remember, the brain

(07:48.9 - 07:50.6)

isn't sending signals to the body.

(07:50.7 - 07:52.8)

So all my tight muscles and tendons

(07:52.9 - 07:55.3)

are controlling where my body goes.

(07:55.4 - 07:57.5)

So the tight muscles are saying,

(07:57.6 - 08:00.7)

you're weak on your right side.

(08:00.8 - 08:03.6)

So if I'm weak on my right side, but I'm stronger on

(08:03.6 - 08:06.6)

my left side, I'm going to tend to lean on the weaker

(08:06.7 - 08:09.9)

side because I can't hold myself up on that side.

(08:10.1 - 08:11.8)

So you have a lot of like, strong

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muscles competing with weak muscles with CP. Right.

(08:15.3 - 08:19.4)

So underneath the tone, your muscle can be very weak,

(08:19.4 - 08:22.2)

or underneath the tone, your muscle can be very strong.

(08:22.4 - 08:24.6)

And so that's what tends to happen.

(08:24.6 - 08:26.5)

So because I have some muscles that

(08:26.5 - 08:28.7)

are stronger than others, it's like always

(08:28.7 - 08:31.1)

a competition with inside my body.

(08:31.3 - 08:34.1)

So back then at that time, it

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was that it was uncomfortable for me.

(08:36.7 - 08:41.2)

Sticking my legs out was comfortable, and it felt

(08:41.3 - 08:43.8)

good to me to stick them out like that.

(08:43.9 - 08:45.6)

A lot of people would say, oh, I

(08:45.6 - 08:48.6)

think that's uncomfortable, or don't you feel uncomfortable?

(08:48.8 - 08:50.9)

But that was my normal.

(08:51.1 - 08:52.6)

I didn't know any other way.

(08:52.7 - 08:54.3)

So that was my normal.

(08:54.4 - 08:57.3)

And here you come trying to change up my normal.

(08:57.4 - 08:59.9)

So that was a lot of the back

(08:59.9 - 09:01.8)

and forth, too, when I was younger.

(09:01.9 - 09:03.8)

And again, I just didn't know how

(09:03.8 - 09:06.0)

to articulate it the best way.

(09:06.1 - 09:08.2)

But now that I'm older, like mom

(09:08.3 - 09:09.9)

will even ask me these questions.

(09:10.0 - 09:11.9)

And when I put it in that perspective,

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she's like, oh, I get it now. You know

(09:15.0 - 09:16.1)

Now it makes sense.

(09:16.2 - 09:19.5)

But this is why I love doing this and us

(09:19.6 - 09:22.3)

coming together, because now I'm able to explain why it

(09:22.3 - 09:24.4)

was so much pushback when I was younger.

(09:24.5 - 09:27.2)

It wasn't so much me trying to be hard headed.

(09:27.3 - 09:29.7)

It's also learning my body and

(09:29.8 - 09:31.5)

learn what I was okay with.

(09:31.6 - 09:33.8)

And sometimes that I have to be uncomfortable.

(09:33.9 - 09:35.3)

I still struggle with that.

(09:35.3 - 09:37.2)

Who wants to be uncomfortable sitting

(09:37.3 - 09:38.9)

where they're sitting all day long?

(09:39.1 - 09:41.5)

So I still struggle with balancing

(09:41.6 - 09:45.2)

between being comfortable and being uncomfortable. Yes.

(09:45.3 - 09:48.4)

Let me just interject for a moment and

(09:48.6 - 09:53.7)

say this, that I can remember you crying.

(09:54.3 - 09:56.5)

I also remember your mom crying a lot.

(09:56.8 - 10:00.4)

And I was stuck between the two of you.

(10:00.6 - 10:03.3)

I will say this, that you've come further

(10:03.4 - 10:05.7)

than what the doctors can even perceive.

(10:06.2 - 10:10.6)

And I think that that has a lot to do with faith.

(10:10.9 - 10:13.7)

So yes, I agree with you, but I also think it

(10:13.8 - 10:17.4)

has to do with my mom being a great advocator.

(10:17.5 - 10:18.6)

So thank you, mom.

(10:18.8 - 10:21.3)

And all the treatment options and surgeries they

(10:21.4 - 10:23.3)

have out there for people with CP.

(10:23.5 - 10:26.6)

And for those of you wondering if my legs still

(10:26.7 - 10:30.7)

do stick out, no, they do not, thanks to straps

(10:30.8 - 10:33.9)

that they have on my wheelchairs and things like that,

(10:33.9 - 10:36.2)

they have these straps that tie your legs down.

(10:36.3 - 10:38.5)

So over the years, because my legs have

(10:38.6 - 10:41.4)

constantly been tied down, they just stay in.

(10:41.4 - 10:43.2)

Now they don't stick out anymore.

(10:43.6 - 11:10.9)

(Instrumental Music)

(11:10.9 - 11:15.0)

So on to the next nonsurgical treatment option.

(11:15.1 - 11:16.4)

And that is ankle foot

(11:16.5 - 11:20.0)

orthotics or Supra-Malleolar orthotics.

(11:20.1 - 11:24.2)

And the ankle foot orthotics is what I usually have. So

(11:24.4 - 11:26.1)

And there's many different types.

(11:26.1 - 11:28.8)

It depends on what you need at the time.

(11:28.9 - 11:31.3)

So I remember when I started, I had the

(11:31.3 - 11:32.8)

one that came all the way up to the

(11:32.8 - 11:35.3)

kneecap and where your ankle would flex.

(11:35.4 - 11:38.6)

So they had like a knee cap cover and that will push

(11:38.7 - 11:42.1)

your knees back while you walk and the ankles would flex.

(11:42.1 - 11:45.8)

So, you know, when you guys walk auntie your ankles, flex

(11:45.9 - 11:49.4)

up and down with people with CP, they don't flex.

(11:49.5 - 11:52.2)

So they put the strap, the chest strap, they call it a

(11:52.2 - 11:55.8)

chest strap behind the brace and you can loosen it

(11:55.9 - 11:58.3)

a little bit or you can tighten it where your

(11:58.4 - 12:00.9)

foot doesn't move at all and flex forward.

(12:01.0 - 12:02.9)

Or you can loosen it a little bit so

(12:03.0 - 12:06.0)

that you can actually get the foot action of

(12:06.1 - 12:08.9)

moving forward, moving back like the ankle moving.

(12:09.0 - 12:12.2)

So I had that growing up and I had where they

(12:12.3 - 12:15.1)

had the cover over the knee, so that helped push your

(12:15.2 - 12:18.0)

knees back so you could walk a little bit more easier.

(12:18.1 - 12:20.8)

But throughout high school, I had got really

(12:20.9 - 12:23.0)

good with walking around and moving around.

(12:23.2 - 12:26.4)

till as you get looser and you begin

(12:26.5 - 12:29.2)

to gain more mobility, there are certain things

(12:29.3 - 12:31.5)

you no longer need on the braces.

(12:31.7 - 12:34.4)

So over the years, I got rid of the cap that

(12:34.4 - 12:36.8)

goes over the knee cap to help your knee stay back.

(12:36.9 - 12:39.8)

I probably need those again because when I

(12:39.8 - 12:41.7)

walk, I Crouch down to the floor.

(12:41.8 - 12:43.3)

But everything is always ever

(12:43.4 - 12:44.9)

changing for people with CP.

(12:44.9 - 12:49.5)

So it goes on like if you're strong or weaker now.

(12:49.6 - 12:51.0)

And we'll discuss that in more

(12:51.1 - 12:52.7)

detail in the next episode.

(12:52.8 - 12:56.3)

So the super-Malleolar orthotics is just where

(12:56.3 - 12:59.1)

they cover the foot and the ankle portion.

(12:59.1 - 13:00.8)

So you ever see where kids just

(13:00.9 - 13:03.1)

slide the braces into their shoe?

(13:03.3 - 13:05.8)

They don't have like the brace that comes

(13:05.9 - 13:07.8)

all the way up like I do. Yeah.

(13:07.9 - 13:10.1)

So that one you just slip inside your

(13:10.1 - 13:12.5)

shoe, keeps your ankle and foot in alignment.

(13:12.5 - 13:15.0)

And that's the purpose of all the braces, to keep

(13:15.0 - 13:18.1)

your foot in alignment, all the bones in alignment and

(13:18.2 - 13:20.7)

to make sure that you could still have more mobility.

(13:20.9 - 13:23.3)

I love my braces.

(13:23.4 - 13:25.9)

When I say love, I mean love you guys.

(13:25.9 - 13:29.8)

I love them because with Cerebral Palsy

(13:29.8 - 13:32.0)

you have to deal with tone.

(13:32.1 - 13:35.4)

So when I come out of my braces, my tone

(13:35.4 - 13:38.6)

on my feet really kick in and they used to

(13:38.6 - 13:42.2)

curl over like you know they would stick up straight.

(13:42.3 - 13:44.2)

But now as I've gotten older,

(13:44.2 - 13:46.0)

they curl underneath each other.

(13:46.2 - 13:48.2)

So it is very painful.

(13:48.2 - 13:51.1)

It's like a spasm so I like to keep them on.

(13:51.2 - 13:53.4)

I do know some of my friends hate

(13:53.4 - 13:56.0)

them, so it's all in like the preference.

(13:56.1 - 13:59.5)

And I know some of my friends say that they hate them.

(13:59.6 - 14:02.5)

It causes their feet to swell, and

(14:02.7 - 14:04.5)

again, it goes back to that comfortability.

(14:04.6 - 14:07.0)

It feels uncomfortable to them, but

(14:07.0 - 14:08.7)

for me, they're very helpful.

(14:08.8 - 14:09.8)

I love them.

(14:09.9 - 14:12.7)

You also have the knee mobilizers.

(14:12.8 - 14:16.7)

Now those are another dreaded option because they

(14:16.8 - 14:19.6)

are like the A-frame auntie, except you don't

(14:19.6 - 14:21.7)

have the bar in the middle anymore, right?

(14:21.8 - 14:25.7)

So they just cover the entire thigh, the

(14:25.8 - 14:27.7)

knee, all the way down to your foot,

(14:27.8 - 14:29.5)

and you can't bend your leg at all.

(14:29.6 - 14:33.3)

So I don't like wearing them because I feel like

(14:33.4 - 14:36.0)

when I come out of them in the morning, I'm

(14:36.0 - 14:38.0)

way more tighter than when I went in.

(14:38.1 - 14:41.6)

And that's probably because my tone was fighting all

(14:41.6 - 14:43.4)

night for my legs to curl up in a

(14:43.4 - 14:44.6)

ball so I could go to sleep.

(14:44.7 - 14:47.2)

And it is just very uncomfortable.

(14:47.3 - 14:49.1)

So I still don't like wearing them.

(14:49.2 - 14:52.4)

I'm trying to adjust to wearing them because as

(14:52.5 - 14:55.1)

I've gotten older, I realized that I need them.

(14:55.4 - 14:58.4)

(Cartoon Ascending sound)

(14:58.5 - 15:02.9)

We also have walkers. Yay!!! So

(15:02.9 - 15:05.1)

It's not the traditional Walker guys.

(15:05.2 - 15:08.1)

It's like a posterior Walker where you have the

(15:08.1 - 15:11.8)

two red handlebars and two wheels on the front

(15:11.9 - 15:15.1)

and I have two Stoppers on the back.

(15:15.2 - 15:16.9)

So I don't have wheels.

(15:16.9 - 15:19.9)

Some people can have wheels and some people can

(15:19.9 - 15:22.5)

have Stoppers on the back because I tend to

(15:22.5 - 15:24.5)

use my arms more when I walk.

(15:24.6 - 15:27.5)

The wheels on the back, it moves too

(15:27.5 - 15:29.3)

freely for me and I can't control it.

(15:29.4 - 15:31.7)

So they put Stoppers on the back and wheels on the

(15:31.7 - 15:34.2)

front so that I have a little bit more stability.

(15:34.4 - 15:36.4)

So I like that it's not the

(15:36.4 - 15:39.1)

traditional Walker that you see elderly people

(15:39.2 - 15:40.8)

with where they're able to sit down.

(15:40.9 - 15:42.4)

There are some people that can

(15:42.5 - 15:44.1)

walk with the walkers in front.

(15:44.3 - 15:46.6)

I just tend to be the one that can't

(15:46.7 - 15:48.6)

because I like to use my arms to walk.

(15:48.7 - 15:52.0)

My upper body is stronger than my lower body, so I tend

(15:52.0 - 15:54.7)

to use my arms more to walk than I do my legs.

(15:54.8 - 15:56.4)

So I need that stability to

(15:56.4 - 15:58.4)

hold on and keep myself upright.

(15:58.5 - 16:00.7)

You also have standers

(16:00.8 - 16:03.2)

Now I don't have one anymore, but I used

(16:03.2 - 16:06.4)

to have a bunch of them throughout my childhood.

(16:06.5 - 16:10.3)

And, boy, they weren't easy either, because like I

(16:10.3 - 16:13.6)

said before, when going back to stretching, it literally

(16:13.6 - 16:16.2)

feels like your body is pulling in the opposite

(16:16.3 - 16:18.2)

direction of where you need to go.

(16:18.3 - 16:22.5)

So the stretch was always, always, always, very intense.

(16:22.7 - 16:26.3)

But I realized now as an adult again, this is like

(16:26.3 - 16:30.9)

a theme that is coming up that is also very, very helpful.

(16:31.0 - 16:56.4)

(Instrumental Music)

(16:56.4 - 16:58.5)

We're gonna get into some

(16:58.5 - 17:02.1)

more invasive non surgical treatment options.

(17:02.3 - 17:03.5)

And I only say invasive

(17:03.6 - 17:06.5)

because they're more injections.

(17:06.9 - 17:09.8)

So they have Botox.

(17:10.0 - 17:12.5)

Yes, I've been waiting oh, you've

(17:12.5 - 17:14.1)

been waiting on the Botox.

(17:14.1 - 17:15.6)

You've been waiting on the Botox.

(17:15.7 - 17:19.6)

Is that because people now use it for cosmetic reasons?

(17:19.7 - 17:24.8)

Yes, that is the exact reason that I wanted too.. I've been

(17:24.9 - 17:29.4)

waiting so patiently for it because it does help

(17:29.5 - 17:33.6)

some people with tightening their skin, certain parts of

(17:33.6 - 17:35.3)

their skin that they want tighten.

(17:35.4 - 17:37.1)

And whoever would have thought that it

(17:37.2 - 17:40.9)

could be used as a non-invasive

(17:41.0 - 17:44.2)

procedure to help people with cerebral palsy?

(17:44.3 - 17:47.3)

It's Fun Fact Time Sound Effect

(17:47.5 - 17:49.7)

You know, the interesting thing is, Auntie,

(17:49.7 - 17:51.9)

that's what it started out for originally.

(17:52.0 - 17:55.6)

It didn't start out for your cosmetic needs. Everyone.

(17:55.8 - 17:59.2)

It started out as a treatment to help people with CP.

(17:59.4 - 18:02.4)

(Beat Instrumental)

(18:02.6 - 18:05.0)

So may I ask a question? Go ahead

(18:05.0 - 18:08.1)

Would you recommend this to parents

(18:08.2 - 18:11.0)

with small children or teenagers?

(18:11.2 - 18:13.9)

Would you recommend the Botox for

(18:14.0 - 18:16.8)

them to get for their children?

(18:16.8 - 18:18.9)

Definitely, I definitely recommend Botox.

(18:19.0 - 18:20.8)

Again, it's my personal preference.

(18:20.9 - 18:22.5)

So everyone is different.

(18:22.6 - 18:24.4)

So what I would say is if you have a

(18:24.4 - 18:27.8)

teenager, maybe they're not that in tune to their body

(18:27.9 - 18:31.0)

yet, but begin to ask them questions like, how does

(18:31.0 - 18:33.5)

it feel to you when I do this?

(18:33.6 - 18:36.5)

Or does it feel like you're too loose?

(18:36.6 - 18:38.9)

Does it feel like you're too tight?

(18:39.0 - 18:42.0)

What does it feel like to you and how can I help you?

(18:42.1 - 18:45.3)

I think as I got older, that's what Mom did for

(18:45.4 - 18:47.6)

me and she was like, okay, well, what works for you?

(18:47.6 - 18:48.6)

Like, what do you like?

(18:48.7 - 18:51.4)

Okay, I know you like this, but we

(18:51.4 - 18:53.6)

still need to find an even keel balance.

(18:53.7 - 18:56.9)

So for your teenagers, I would say invite them in

(18:57.0 - 19:01.0)

on the treatment process and right that's like the biggest thing.

(19:01.1 - 19:02.9)

Once they become a teenager, they have to

(19:02.9 - 19:04.7)

start learning how to advocate for themselves.

(19:04.8 - 19:07.6)

So it gives you good advocating skills too.

(19:07.7 - 19:09.1)

So I would say bring them in on

(19:09.1 - 19:11.1)

the treatment options when they're a teenager.

(19:11.1 - 19:13.8)

When you're a child, as a parent, do what you

(19:13.8 - 19:16.0)

feel is right for your child at that time because

(19:16.2 - 19:18.7)

you know your child best, you know what your child

(19:18.8 - 19:21.4)

needs, you know what they need at that moment and

(19:21.4 - 19:22.9)

what is going to help them through.

(19:23.0 - 19:25.5)

So as a parent with a little child, if you

(19:25.5 - 19:27.7)

feel like Botox is going to help them and it's

(19:27.7 - 19:30.2)

going to be beneficial for them, get it, do what

(19:30.3 - 19:32.4)

you feel is right for your child at that time.

(19:32.5 - 19:34.9)

For a teenager, I would say invite them in on

(19:34.9 - 19:37.3)

the process so that they can start to learn their

(19:37.3 - 19:39.6)

body and what they like from what they don't like

(19:39.7 - 19:42.1)

and what will work and what doesn't work for them

(19:42.2 - 19:45.5)

so that they can begin to start advocating for themselves.

(19:45.9 - 19:46.4)

Yes.

(19:46.5 - 19:49.6)

And I want to say also that this

(19:49.7 - 19:52.6)

program is letting you know your options.

(19:52.7 - 19:54.8)

When Latavia was coming up, her

(19:54.8 - 19:56.3)

mother, she did the research.

(19:56.4 - 19:58.0)

She searched around.

(19:58.2 - 20:00.2)

But you don't have to do all of that

(20:00.2 - 20:03.7)

with this program because we're informing you of the

(20:03.7 - 20:06.9)

different options that you will have that you can

(20:07.0 - 20:09.6)

possibly do that will help your child.

(20:09.7 - 20:11.1)

Yes, most definitely.

(20:11.2 - 20:12.2)

Most definitely.

(20:12.4 - 20:14.8)

And I think this show also helps because

(20:14.8 - 20:17.0)

you have it coming from a perspective of

(20:17.0 - 20:19.2)

an adult who's living with CP. Correct.

(20:19.3 - 20:20.9)

And you have it coming from many different

(20:20.9 - 20:22.9)

angles because I've had some of my friends

(20:22.9 - 20:25.7)

on who've had different experiences. Right.

(20:25.7 - 20:28.3)

But we all live with CP, so that's

(20:28.3 - 20:29.9)

what we aim to do on this show.

(20:29.9 - 20:31.3)

So that's why I love it.

(20:31.5 - 20:34.0)

And I forgot to mention that my

(20:34.0 - 20:36.5)

advice is for children that are cognitive.

(20:36.6 - 20:38.3)

You should always invite them in on

(20:38.3 - 20:40.9)

the treatment plan when they're a teenager.

(20:41.0 - 20:43.5)

And when they're young, children parents

(20:43.5 - 20:45.7)

should always, always be involved.

(20:45.9 - 20:48.1)

If your child is nonverbal, then

(20:48.1 - 20:50.2)

you watch their facial expressions.

(20:50.3 - 20:53.8)

But if they have no cognitive abilities at all, do what

(20:53.8 - 20:56.9)

you feel is best for your child as the parent.

(20:57.1 - 21:27.3)

(Instrumental Music)

(21:27.3 - 21:32.0)

You also have the baclofin pump or the Baclofin pill

(21:32.0 - 21:34.3)

Oh, talk about it, girl. Ok.

(21:34.5 - 21:38.1)

So now the Baclofin pump was a no, no, for me. Ok.

(21:38.1 - 21:40.8)

Because it is a surgery where they have

(21:40.8 - 21:44.4)

to insert a device that delivers the medication

(21:44.4 - 21:46.5)

called the Baclofin to the spinal cord.

(21:46.6 - 21:48.9)

So for me, having a device under my

(21:48.9 - 21:51.2)

skin was like, I'm not doing that.

(21:51.2 - 21:52.4)

That's out the question.

(21:52.6 - 21:54.8)

And back then, my mom didn't want me to take it

(21:54.8 - 21:58.1)

either because it had a lot of complications and side effects.

(21:58.2 - 22:01.9)

So I get to ask a question, what exactly is Baclofin?

(22:02.0 - 22:05.5)

So Baclofin is a medication that reduces the

(22:05.6 - 22:07.8)

spasticity and the tone of the muscles.

(22:07.9 - 22:10.6)

So it's not as localized as Botox, because with

(22:10.6 - 22:12.6)

Botox, you just inject it where you want it

(22:12.6 - 22:15.4)

to go, which is why I love Botox, because

(22:15.6 - 22:17.4)

you inject it where you need it.

(22:17.5 - 22:18.7)

So it's more localized.

(22:18.8 - 22:22.2)

But Baclofin relaxes all of the tight muscles

(22:22.2 - 22:25.1)

in your body, which is why I tend to

(22:25.1 - 22:27.5)

not enjoy the pill or the pump.

(22:27.7 - 22:32.1)

I do have friends that love the pill and love the pump.

(22:32.1 - 22:34.4)

I tend to find my friends that, like

(22:34.4 - 22:37.5)

the pump, deal with spasticity all the time.

(22:37.6 - 22:38.5)

And it's painful.

(22:38.6 - 22:41.1)

They deal with a lot of spasms, too, because

(22:41.1 - 22:44.6)

with CP comes a lot of spasms and spasticity.

(22:44.7 - 22:45.8)

So they tend to deal with

(22:45.9 - 22:47.7)

a lot of spasms and spasticity.

(22:47.8 - 22:50.2)

So they rather just have the device there where

(22:50.2 - 22:53.2)

they can deliver the medication to themselves when they

(22:53.2 - 22:55.6)

need it and they're good to go. Right.

(22:55.7 - 22:58.4)

And then I have people that love the pill, like

(22:58.4 - 23:01.2)

Luis was on last week, and he says he loves

(23:01.2 - 23:03.1)

the medicine because it makes him feel loose.

(23:03.1 - 23:04.8)

He doesn't like feeling tight all day.

(23:04.9 - 23:07.8)

But for me I don't like any of those options

(23:07.9 - 23:11.5)

just because again my normal is to feel tight.

(23:11.6 - 23:13.8)

So I don't like to feel loose because then I feel

(23:13.8 - 23:17.1)

like I can't function and I can't move around and because

(23:17.2 - 23:19.8)

I need to function and move around because I work.

(23:19.9 - 23:21.2)

I don't like taking the pills.

(23:21.3 - 23:23.9)

But I realize now that I'm older and an

(23:24.0 - 23:26.8)

adult I may need to take it.

(23:26.9 - 23:30.3)

So I just recently had my physiatrist prescribe it

(23:30.3 - 23:33.2)

for me and I'm going to start taking it.

(23:33.3 - 23:35.8)

I will let you guys know how I feel because

(23:35.9 - 23:39.1)

I took baclofin back when I was like late

(23:39.1 - 23:41.6)

teens and I was just like this isn't for me.

(23:41.6 - 23:43.2)

I don't want to try it but I

(23:43.2 - 23:46.2)

know now that I need to do something.

(23:46.2 - 23:48.4)

So I will let you guys know how

(23:48.4 - 23:50.9)

I feel when I start taking the pills.

(23:51.0 - 23:54.0)

So stayed tuned

(23:54.1 - 24:24.3)

(Instrumental Music)

(24:24.4 - 24:25.4)

and now its time

(24:25.4 - 24:27.6)

for the quote of the episode.

(24:28.3 - 24:30.4)

So my aunt is going to leave us with the

(24:30.4 - 24:37.3)

quote, whatever challenges you may have in life go forward.

(24:37.3 - 24:40.8)

And that was a quote originated by her guys.

(24:40.8 - 24:49.7)

(Clapping sound)

(24:49.7 - 24:51.4)

So Auntie, why did you feel

(24:51.5 - 24:54.3)

like that quote embodied this episode?

(24:54.8 - 24:57.9)

Because we all have challenges in our lives

(24:57.9 - 25:00.9)

and sometimes we may feel like going backwards.

(25:00.9 - 25:03.9)

But know this going backwards is not

(25:03.9 - 25:07.9)

an option so we keep pushing forward.

(25:08.0 - 25:10.1)

Wow, that is so profound.

(25:10.2 - 25:12.2)

Thank you so much, Auntie.

(25:12.4 - 25:41.9)

(Instrumental Music)

(25:41.9 - 25:44.7)

So that's all we have for you today, folks.

(25:44.9 - 25:47.1)

Thank you for joining me, Auntie.

(25:47.2 - 25:48.9)

You're welcome, Niecy

(25:49.1 - 25:51.3)

Thank you guys out there for sharing.

(25:51.4 - 25:54.5)

Please continue to subscribe you subscribe by hitting

(25:54.5 - 25:56.6)

the little plus button in the corner.

(25:57.2 - 25:59.5)

Let us know what you want to hear and

(25:59.6 - 26:01.8)

if anybody else out there who is ably

(26:01.8 - 26:04.7)

different has a story to share, please share

(26:04.7 - 26:09.5)

it with us at queensonaroll.podcast@gmail.com.

(26:09.6 - 26:14.1)

That again is queensonaroll.podcast@gmail.com.

(26:14.8 - 26:17.2)

I really, really appreciate that you

(26:17.3 - 26:19.1)

guys are listening every week.

(26:19.2 - 26:20.2)

Thank you so much.

(26:20.2 - 26:21.8)

Please continue to share and run

(26:21.8 - 26:24.3)

it up and we're rolling out.

(26:24.4 - 26:29.9)

Yes, we're rolling out because we are Queens On A Roll.

(26:30.0 - 26:31.2)

See you guys next week.

(26:31.5 - 27:01.3)

(Instrumental Music)

(27:01.3 - 27:04.3)

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