Re: Dazed and Confused in Oregon

[Guest guest]

Hi Suzanne, like you I have a disabled placard. I am 24 soon to be 25 and

when I exit the car being parked in a handicapped spot people glare as if

nothing is wrong with me, I assume because I am young but I am on the verge of

needing either a wheelchair or scooter when I am in the stores or anywhere else

for

that matter for any length of time. I also have severe R. arthritis that is

almost sickening. As far as exercise goes, I try to do all the things my PT

taught me but you always have doubts to if it is making you worse or not. I

figure if I can do it without making the pain any worse it can't be hurting you,

anymore at least. Also to answer another post quickly I am disabled from my

CP, but my disability is not limited to CP. I have 2 bulging discs, nerve

damage in my back and hip, r. arthritis, and CP. I know we are in pain in one

way

or another and sometimes it is hard to define the line between pain and

disability, but I know I actually miss being able to work. I feel useless, I am

rarely able to leave my home unaccompanied because I fall down, and just because

you get disability check, well that doesn't pay for your lost pride.

[Guest guest]

**Comments by Ann

Dazed and Confused in Oregon

I think the most frustrating thing for me has been the inconsistancy

in advice.

**No kidding!!!

One therapist will say do this and another will say do

that. I love taping because it allows me to dress the way I like to

dress. Before discovering this technique I thought I was doomed to

wear baggy pants to cover those big bulky braces. My 1st question is,

should I wear the tape while exercising or not?

**That's the only time I use it. If I didn't, I couldn't exercise. Have you

had someone show you how to apply it? It'll do different things depending on

where you place it & what angle you cross over the patella at. I use 3 long

pieces and a short one. The first long piece goes from the top lateral corner

(actually about 2 " beyond that) of the patella, across the patella at a downward

angle, way onto to the medial fat pad. My PT told me it's very important to

push the flesh of the fad pat area up to receive the tape so that your skin is

all folded up under the tape (is this picture getting through?), for the best

hold. Then I run another piece of tape across starting a little higher, but

crossing the first piece just a little so that it ends lower. then I run a

piece straight across the patella, and lastly I use a shorter piece that starts

on the lateral side of the lower patella and curves around the patella across

the top. BUT you made need a different configuration, depending on where,

exactly, your CP it, and how bad it is. Sometimes I get a little medial ache

using the tape, meaning I probably went too far, but that usually goes away and

I havent had any after-consequences.

Also, I am doing an

exercise given to me by a PT that I am wondering about. I sit in a

chair with a rubber type band around the ankle. The other end is

secured onto a piece of furniture. I then lift my leg about half way

up and then bring it back down.

**This sound similar to one my PT had me doing to strengthen one of the leg

rotator muscles in the hip. Same setup, but I'd only lift the foot (pulling it

away from where the Theraband was anchored), making sure that I was using the

hip muscle, not the adductors. I thought this was a really good exercise and I

REALLY should be doing it now, but I stopped when I started going back to the

gym. Of course, if it hurts your knee you shouldn't do it. He never told me to

lift my whole leg, but that would realy use the adductors and seems to me to be

a good exercise for strengthening them if they're weak, but I'M NOT A PT OR A

DOC.

Is this a safe exercise to do? I have

a difficult time driving but I now believe it is due to the tenonitis

I developed following the CP. I was given a disabled placard because

I believe that I am disabled. In my opinion if you can't run, squat,

dance, etc... you're disabled. I was grateful for the DR. name at

OHSU. I'm about 4 hours away but what a great excuse to see a

specialist and spend some time in Portland. Suzanne

[Guest guest]

Rheumatoid arthritis?! That is serious. I would take simple CP any day.

My father has rheumatoid arthritis. I hope you are being aggressively

treated for that.

Mike

Re: Dazed and Confused in Oregon

> Hi Suzanne, like you I have a disabled placard. I am 24 soon to be 25 and

> when I exit the car being parked in a handicapped spot people glare as if

> nothing is wrong with me, I assume because I am young but I am on the

verge of

> needing either a wheelchair or scooter when I am in the stores or anywhere

else for

> that matter for any length of time. I also have severe R. arthritis that

is

> almost sickening. As far as exercise goes, I try to do all the things my

PT

> taught me but you always have doubts to if it is making you worse or not.

I

> figure if I can do it without making the pain any worse it can't be

hurting you,

> anymore at least. Also to answer another post quickly I am disabled from

my

> CP, but my disability is not limited to CP. I have 2 bulging discs, nerve

> damage in my back and hip, r. arthritis, and CP. I know we are in pain in

one way

> or another and sometimes it is hard to define the line between pain and

> disability, but I know I actually miss being able to work. I feel

useless, I am

> rarely able to leave my home unaccompanied because I fall down, and just

because

> you get disability check, well that doesn't pay for your lost pride.

>

>

>

[Guest guest]

I am supposed to start pain management and therapy but it seems like all of

this is hitting at once. I know I have suffered for a while with pain all over

but never considered there was this much wrong with me. It's scary really.

Being able to walk is the main thing. The doc says I have become to used to

alot of the pain that I am lucky in some ways but more prone to injury because

of it. I'm just getting old before my time. I try not to dwell but I must

admit I am afraid of what more is to come. There are days I don't even leave

my bedroom let alone my home, and it wears on my self confidence I feel very

useless these days. Manda