My Intro

[Guest guest]

My name is and I am a 42 year old male with CMT 1A. I

was diagnosed around age 10 and had several surgeries on both feet

between ages 14-16. I had heel cord lenghtened, tendon release and

triple arthrodesis. For no worse than I was at the time it seems a

little radical now, but my loving parents made what they thought was

the best decision based on surgeon's recommendations. Other than the

fact that I now have arthritis in my ankles from the surgery (even

had bone spurs removed in 90), I really haven't noticed any

significant problems with my legs. I don't have a lot of movement in

my ankles so I do not have to wear AFO's at this time. Other than a

slight tremor, I have not noticed a problem with my hands to date.

In 1990 I was diagnosed with sleep apnea and now use a bi-pap machine

at night. Part of this may be due to the CMT but honestly, part of

it is my weight also.

I am a CPA and work full time as a CFO for a computer company in the

Dallas area. I have been married for almost 18 years and have two

beautiful girs, ages 9 (Zoe) & 10 (Kelsey). The youngest shows no

signs of the disease at this time but the oldest does have CMT. She

is an intelligent, active young lady and even swims on the City of

Plano, Texas swim team. She's not the fastest swimmer on the team by

any means but she is competetive. They practice 5 days a week so

this is great excercise for her. She is being treated for CMT at

ish Rites hospital in Dallas and they have provided her with

AFO's. They have even asked me to have an EMG and nerve conductivity

test so that they can use my date to help track her case. It's been

a hundred years since I had these tests done but I do remember they

are not a lot of fun. But, whatever it takes to help my daughters

treatment, I am more than willing to do. This is scheduled for

September.

I know CMT is a bear for everyone afflicted but having a daughter

with CMT has really given me a deeper appreciation for the extra

physical and emotional burden it places on females. My younger

sister also has CMT but honestly, I guess I was just to wrapped up in

my own world as a kid to notice the struggles she endured. Just

seeing the look on my daughter's face when she is trying to find

shoes to wear with her braces breaks my heart. Being a kid today is

tough enough without standing out in the crowd. Add something like

CMT to the mix and it takes a very strong person to overcome the

adversity. I am very thankful that Kelsey has wonderful friends who

accept her as she is.

Sorry to ramble on, I know no one needs my whole life story! I

look forward to participating in and learning from this site.