kids and CMT

[Guest guest]

Hi Barbara, your Alice is quite something. I really feel for both of

you. I was a CMT kid myself, but back in the early 60's when I was

diagnosed, not much was known about it. I spent the next 15 or so years

being dragged around to all kinds of doctors for tests and yes, nerve

/muscle biopsys, electrodes on me in wierd places, being poked and

prodded, yadda yadda yadda. Most of my " afterschool " time was in the

medical scene. From that day I was diagnosed by an orthopedist, he said

" you can probably have children " . Now, even tho I was about 9 or 10 at

the time, I knew that the connection with my FEET and having kids didn't

jive. My parents were the greatest, and wanted answers and help for me.

All the tests really hurt back then, even the spinal tap. Some of this

was done at the UCLA Neuromuscular Center, rest done by doctors in

private practice. There weren't any answers, and I was still expected to

do well in school, and abide by rules in our house/family, etc. No

" special priviledges " for me just because I had CMT. At one point my Dad

wanted me to go to Mayo and I said " No " ! I was through! I was about 19

or so and in college at the time. Later, when I was 27, I had a four day

intensive neuro workup, which told doctors and me nothing. I still had

CMT!!!!! I was also in a drug trial at the time for physiostigmine, at

the urging of my parents. It was hell and I refused to participate

anymore. The doctors and my parents weren't happy, but I FINALLY started

LIVING my Life!!!! And happily too!!!!! I chose a very demanding

career, and have also chosen NOT to have children, biologically

speaking, but I am open to adoption. I have a great life, I only see my

doctor about once a year, I travel, work, care for my animals, paint,

hang with friends (boyfriends, too) and while CMT IS part of who I am, I

feel it has made me a better person, very strong emotionally, also

assertive and very clear about my personal boundaries. To Alice and all

the other CMT children via this list, I would say, " You GO GIRL and

BOYS, Live your Life! " Read alot, study hard, aim high!!!!!! And most

of all, Stay Positive!

Barbara, if you ever want to talk to me on the phone, feel free to email

me personally and we'll set up a time to talk!

--Gretchen