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Charcot-Marie-Tooth-Polymyalgia Rheumatica

Name: Kathleen
Email: kafald@mediaone.net
Date: 01 Jan 2001
Time: 14:02:04

Story

I suffer from a neuro-muscular, progressive condition called Charcot-Marie-Tooth---no it's not a tooth problem!!! Charcot Marie and Tooth were doctors who lived at the time of Freud, in Vienna.

To make matters worse, I also have polymyalgia rheumatica, and giant cell arteritis. The last is not a mispelling of arthritis! It means what it says, it's of the arteries.

As a child, my mother was paralyzed for a year from what they thought was diptheria. Her dad had to carry her everywhere.

Mom told us of a Christmas when her dad sneaked into her room, which she shared with her older sister. He hung a stocking on each bedpost, and set a doll up near their feet. Each doll had a kid body and a china head.

When he carried her downstairs to enjoy the Christmas tree, she dropped the doll and its fragile head smashed into pieces.

My grandfather wept. How she loved him.

Because the muscles in her heels were rigid, they pulled the muscles in her heels up and she had to wear wide, high heels on her shoes to compensate.

The problems were familial, but not too noticeable in my brother's and my childhoods. I was very awkward and to this day, my knees and shins are scarred from falls when I ran.

The CMT problem was worse in my brother and his children. One was discharged from the service, and is in a wheel chair. That's when the problem was diagnosed correctly by service medical personnel.

My son wore braces as a child. Kids made fun of him and the principal made him play games to be a "real boy."

He told me he'd do "anything" if something could make him normal. After 5 operations to cut muscles in his heels, and special "rocker" shoes, at age 48, he is walking with less pain and without the stiff gait that is common in CMT. The future is a mystery, but he's willing to go through the pain again to stay as comfortable as possible.

I walk with a walker and refuse to take more than a minimum dose of prednisone. My fingers are badly deformed, curling down more and more as time goes by.

This Gateway computer is a Godsend to me. It has a small window on which I use my thumb, with my fist tightened, to manage the cursor arrow. The mouse is impossible. I jerk it badly, often deleting a complete page of the story I'm writing.

I hope you will print this so that others might write to me.

Sincerely, Kathleen

Last changed: October 20, 2003

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