it turned into an essay re: AFOs

[Guest guest]

I read the article about AFOs that was posted here,

and thought I would share my experience with my mom

who also has CMT. My mother is the quintessential

Queen of Denial! She always has been, and so has my

father who does not have CMT, but is pretty near deaf

and won't wear a hearing aid at all. Through much

psychotherapy I have learned that this is typical in

adult children of alcoholics, as they each are.

Nonetheless, I am amazed at what they accomplished

together in terms of a home and family, and I am

extremely thankful for having these two survivors

raise me.

A couple weeks ago, my mom and I had an opportunity to

talk about our CMT. It was amazing for me, as she

hasn't really spoken about CMT with me since I left

home 14 years ago. She had been to her podiatrist for

callous removal(something she does at least once a

month), and he found a broken bone in her foot. She

figures it was from a fall before Christmas time in a

restaurant. I knew about the fall because Mum was

with my sister and her 16 mo old son, and my sister

called me, very upset, asking me what " to do with Mum "

since she won't see a dr or use a cane or anything to

help herself get around better. Not only won't she do

any of those things, but now she is stalling on

getting the bone set! She is worried that if she is

in a cast for any length of time, she will lose more

muscle and " not be able to walk at all " . So she has

it in her mind to see a neurologist to see how much

nerve loss she does have in her legs, BEFORE she goes

to an orthopedic surgeon to have the bone fixed. She

says, " You can't give in to it. You gotta fight it! "

In my opinion, her idea of " fighting it " , is putting

off the inevitable and suffering in the process. So I

tried to tell her the only muscle she would lose if

any, is the calf muscle, to which she replied " That's

already gone! " . So I told her then the worse that

would happen is she may have to wear an AFO, and I

already wear 2 of them, and they help a LOT! She was

quiet on the other end of the phone. I'm thinking she

was going through all the negatives she could muster,

without expressing them to avoid upsetting me.

In the meantime, she is gulping down her favorite

anti-inflammatory(Nuprin), and walking around (however

limited) on a broken foot, waiting for an appt with a

neurologist, and then MAYBE at this rate getting an

orthopedic by summer!

So Dr. Vinci has a very valid point about the CMT

patients' reservations on the aesthetics and comfort

of the AFO. I say it all the time: CMT is a very

frustrating condition to have since often we are not

viewed to be debilitated enough for a wheelchair(where

others visually see the physical challenge) and yet we

ARE physically challenged(as much as 3 or 4 times that

of a " normal " person, according to my neurologist).

But since others can't " see " the challenge, they

question it's validity. And then sometimes, as in my

case, the person with CMT often questions their own

limitations' validity as well. Without knowledgeable

professionals(in my experience, knowlegeable

professionals are scarce) to support the CMT patient,

often conflict arises leading to greater psychological

consequences for the CMT patient. Again, a suffering

of the CMTer that others often can't visualize.

I apologize for the length of this post, but I felt

like shedding a greater light on Dr. Vinci's article.

And I am aware that I am " preaching to the choir " , but

it feels better to " get it all out " !

Thank you,

Joyce

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