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Welcome and family and thank you for introducing yourselves. As

a CMT child myself, doctors told my parents to make sure I swam alot and

walked in the sand to strengthen muscles; I did both; still do. All of

life's pleasures (and some pain - 1 surgery on my feet and the horrible

EMG/NCV tests, tremors ) have come and gone with me; I am 50 now, CMT

has barely progressed in me; when I was 27 a doctor told me I would be

in a wheelchair by the time I was 30. It hasn't happened. Matter of

fact, none of the 'dire predictions' made about me have happened. I am

50 now, all I need is orthotics in my shoes to correct my walk, as if I

revert to toe-walking (my natural walk) when I am tired, my balance can

get wobbly.

I grew up in a family that allowed me to be 'normal' - nothing much was

known about CMT at the time, (50's and 60's') so school, dances,

parties, college, career, were all part of my life, just like my

friends. Not to mention chores, homework, part-time jobs while in

school, etc.

We are all different in how CMT affects us. I remember a neurosurgeon

Rotarian friend of my father's telling me how I would grow up and live

my own medical history. Now that guy was right! Have done just that!

Educating yourself about CMT will take away fear. I would like to

suggest reading the information in our links on CMT and also this book

Rehabilitation Management in CMT http://www.aicmt.org/books.htm We have

other parents with CMT children here, I am sure they will give you

suggestions. You might also want to get the CMT TODAY magazine - it comes

out 6 times a year - for more information on it email cmt.today@...

Again, welcome to .

~ Gretchen

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  • 2 years later...

Welcome & Family,

I too have the same name, don't very often get to see it. Welcome to our

wonderful group of great upbeat people. Our 15 yr old son was diagnosed with CMT

in 2001, in this past November we learned that it is CMT X, and that even though

I knew I carried from my side of the family, his doctor who was doing an EMG and

nerve conducting test did the same tests on myself and confirmed what I really

knew deep down that its in my feet and hands. Welcome to the group.

We're from PA. And you? Congratulations on having a baby, that's the best kind

of medicine.

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