Introduction

[Guest guest]

Hello, I live in Austin and had an EMG 7 years ago that confirmed (at least to

my neurologist ) that I had CMT though I always knew that I had inherited it

from my father.  He was diagnosed in the early 50's after my younger brother was

born with severe spinal bifida.  This was after my older sister had had many

problems walking and required foot surgery when she was very young. After a

family history was gathered it was discovered that this had been in my father's

family for years.  It was never determined whether my younger brother was

afflicted with CMT since he had so many other problems but my father, my sister

and myself all inherited it.  My sister who is 61 now uses a cane and my father,

who had foot drop problems in his 50's, had to use a motorized scooter in his

early 70's. 

I have been very lucky in that I have not been severely affected.  Other than

surgeries for finger contractions, thumb surgery, and knee replacement and

shoulder surgery(from arthritis) I have been doing very well.  In the past

couple of years I have been plagued with restless leg syndrome which the drug

Requip helps tremendously.  I have pes cavus and hammer toes and wear orthotics.

 One of the reasons I think I have done so well is that I have always stayed

active.  For the last 27 years I have gone to a Jazzercise class 2 to 3 times a

week, I have also gone to yoga classes (mainly when recuperating from

surgeries).  I love to dance and with the floor exercises I also get weight

training.  I retired from my job as an Academic Counselor at the University of

Texas 10 years ago when my younger brother was dying and never went back.   I am

59 years old and married with 3 grown children and 4 grandchildren, so far none

has any of the signs, though

my 21 year old daughter had surgery for scoliosis when she was 16.  She has not

been tested and with insurance the way it is that kind of diagnosis can be bad.

 

There was a peripheral neuropathy support group in Austin a few years ago but it

has since disbanded.  Of about 25 to 30 members there was only one other who had

CMT.  My major problem is fatigue but I will keep dancing until I cannot and

then I will find something new, like aquatic dancing. 

 

Thanks for the great internet support group.

Jan