Introduction

[Guest guest]

Hello,

I am new to the group and I thought that I would take a moment to

introduce myself quickly. I am 34 years and have lived with CMT for

most of my life. I was actually dxed when I was 11 years old give

or take a year. I remember that day being one the happiest days of

my young life. I know that sounds strange, but I was showing signs

of CMT at a very young age. Up until I was luckly enough for my mom

to take me to a doctor that recongized (found out later that his

wife's family had CMT) I was always told that I was just clumsy and

going through a stage. Man that drove me up a wall for I never " outgrew " that

stage. I finally understood what made me

different and that was a relief when I was dxed with CMT.

I was the first in my family to be dxed even though my grandmother

(father's mother) showed the same symptoms that I had at an early

age herself. The diffence is that she was dxed with Polio. It is

funny because I see, at least now, more and more of my grandmother

in me as I live my life with CMT. My grandmother passed away, now

believed due to the CMT affecting her diaphram and lungs, never

knowing what was really wrong with her. My father then was dxed

after myself for he showed some signs but in a very mild form at

that point of time. My sister was then dxed while she was in High

School. My own son has it as well. He was dxed with CMT through

DNA testing about ten years ago. He thankfully shows no signs of

the CMT though.

Maybe I am an oddball but I never called CMT a disabilty but

a 'disorder' for it can cause disorder until you know how to order

it. I take the falls that I suffer with jokes and laughs. Family

and friends know not to offer help when I fall unless I ask for it.

I have only to ever ask for help to get up once in my life and that

was a few years ago when I slipped on ice, just like any non CMT

person, and I needed 911 called. Even though I was sitting in a

patch of ice because I couldn't get up I was still able to joke with

the firemen that should up who slipped on the ice (he wasn't hurt).

Family even know ask how soft or hard the ground is when I do fall

since I am always testing it.

I would have to say that I am pretty mild in my CMT for I am still

walking unaided. I refuse to wear AFOs, much to my ortho's

displeasure, I use a forearm crutch only in the winter when there is

ice and snow on the ground. I order shoes from KEDS for they make

shoes that are actually wide enough for me to wear and light enough,

again to the displeasure of my ortho. My hands have become more

affected over the last several years, but I work with a tennis ball

squeezing it to help keep what muscle I have there.

I have had surgery on my ankles for among other things a tendon

transfer. Well the operation worked wonderfully on the right foot

and not so great on the left foot. But hey I knew that it was a 50-

50 shot when I agreed. I may not be better off with the left foot

but I am not worse off anyway.

On the most part I look at CMT as an everyday part of life and feel

nothing about it one way or another. I have learned to live with it

to where I dont think about it. I have to say that there are days

when I do get angry at the CMT, not for myself but for my father. I

will be honest I am loosing my father to the CMT for it has affected

his diaphram. He is the one I looked to when first learning to live

with it, for he continued to go work until he had a hard time

standing, and even then he worked from home until his breathing got

worse.

Good Evening

JaRae