Re: sitting down to dress - sort of a long winded reply

[Guest guest]

Hi -

The short answer to your question is " Pig Headedness " .

The true story is sort of long...but here goes - For those of you out

there that have complacent physicians you might find this of

interest.

I had a diagnosis of something wrong when I was 3. No real name for

it. By the time I was 9 I had leg braces for foot drop. By

then " it " was called chronic neuropathy. When I started Junior

High, because we had to change classes and my balance was sooo... bad

I considered crutches. I was very scared of them because I had taken

a few falls using them so we opted to use a wheelchair in school to

change classes and for long distances. This worked out rather well -

however, in hindsight I realize that I was not doing anything to

maintain whatever muscle tone that I did have at the time. And I had

not been advised to do anything in this area. I had long stopped

the daily ritual of exercises and stretching once I got my leg braces

in 4th grade.

So of course, like anyone else, my legs weakened and my arms remained

about the same. I used a wheelchair throughout high school and when

it came to college the obvious choice was a place that could

accomodate wheelchairs. At this point I could not even really stand

for any reasonable period of time without holding on to something.

The really sad thing is, that for the neurologist that I had at the

time I was " a text book case " . Progressively degenerative CMT. The

neurologist seemed fine with this and did not offer any suggested

course of treatment. When I would ask about exercise he would

say " It can damage what you have " and he did not suggest anything.

Remember now also that I only 1 month ago at age 45 met someone with

CMT. So I had absolutely no point of reference with which to argue

against this neurologist.

Well needless to say, I am like a " bull in a china cupboard " and when

I got to college and could see what other folks in wheelchairs were

doing, I wanted that too. I also wanted to spend my summers working

in the mountains where there were no real accomodations for

wheelchairs. So... I started little, by very little, doing more

things. Over time I could stand again. I travelled to Europe -

still in a wheelchair for 5 weeks. When I got home I went to see my

neurologist. I purposely wore a pair of Dutch wooden shoes with my

AFOs and walked into his office. He asked how I did this. I

said " Mind over Matter " . And you know what his reply was? He says

to me " Well that may work to a degree, but your disease will catch up

with you. " The man should not be practicing in my opinion and from

then on I never remember going back to him. He really liked me when

he could " peg " me as a classic case.

In any event that just fueled the fire and I have not turned back.

My wheelchair, which I used all through college and my early working

years now sits in my basement covered in dust. I don't know if I

would have been able to do everything I did without it -- so I don't

have any regrets in that department.

HOWEVER, what this tells me is this. That no matter what you are/or

have, if you don't use your muscles and they will weaken. This is a

very natural phenomena. Just like when anyone breaks their leg and

has it in a cast. It WILL weaken. I think that my muscles are

still working because I am using them and I probably because I am

stubborn. But that is not to say that one day they will not weaken.

I also have a different neurologist that is much better and much more

informed when it comes to CMT.

So I just try and stay active and try and remind myself how lucky I

am that I can still do many things.

Anyway - I say keep moving whatever you have... as my parents used to

say as they were getting older " Move it or Lose it "

Cheryl