Accepting CMT

[Guest guest]

Hello Dennis,

I was diagnosed with CMT at age 13. I went to doctors and physical

therapists and my impression was that they all told me what was

wrong with me. I didn't want to hear any of it. I figured out my

own coping mechanisms. I didn't really " accept " my CMT until I was

33. For almost 20 years, I saw a neurologist maybe 3 times.

It really is a personal journey. When things get challenging, he

will rise to the challenges. When he needs help, he needs to know

that help is out there. If he's feeling fine, though, I wouldn't

push too much. Perhaps model that stretching and exercise are part

of any healthy person's excersice routine.

This is a huge process to accept a lifelong condition. When I was a

teen, I also wanted nothing to do with the reality. I didn't want

to hear anything about a future with limited abilities, wheelchairs,

etc.

Your support and understanding are the most important things. For

all of the tough aspects of CMT, there is also an appreiciation of

the small things and a deep respect for the power of things out of

our control. More than anything, he probably needs time.

Take care,

Lenka

[Guest guest]

Hello, Lenka:

You are so right. I was diagnosed at 8 yrs. of age. I was tripping over my

feet dropping and skinning my knees. It wasn't that the back muscles needed

stretching, it was the front ones didn't work to raise my feet. (gait was

raising knees higher so foot would clear floor) After all testing (strange I

never questioned) my parents said there was a surgery that would help me walk

and hold my feet up without braces. BRACES! No, way.

So, I had the triple aarthodesis on both ankles - four years later when I was

twelve Maybe it was the time in between I went into denial but at 12 what's

that! I accepted the surgery as that was that - SURGERY. My parents never told

me of a disease or anything about it. I did not questions, guess I was a stupid

kid or accepted the surgery as the fix all.

Only time I started seriously thinking of my walking and falling and not being

able to step up a curb much less a flight of stairs, was making the decision for

myself whether or not I would want to have children. I went to genetics

counseling. That was when I opened the door to C-M-T.

I dated men that were older, already had children, or mentioned that they did

not want children. Yes, they are out there. When my husband asked me to marry

him, I told him about my disorder and how it was progressive and I didn't know

what the future had in store for me and all, and it did not matter to him, he

loved me and at 40 yrs. old, he did not want children, I was 33. So, all that

stress of it all, was erased away and I could be content with it all.

I joined the MDA Clinic in 1993 at age 42, 13 yrs. ago. So, the surgery carried

me through my adolesant years - when it mattered, and joined MDA for help with

durable medical equipment.

If I had children I would not have gone into details. I would have held off on

all the information - until they asked. Children are exposed to too much, too

soon, in their little lives and they don't have their brains fully developed

until 20 - so why dump it on them.

Donna B.

[Guest guest]

Lenka, Donna and others,

I will add that when, at age 10, I sat in the orthopedist's office and

heard him say I have CMT. I am very happy I was THERE to hear that at

that age - perhaps almost 'accepting' since not much was known about

CMT at that time. He was kind, and besides the lasting 46 year surgery

I had, he got me into swimming and walking on the beach - two

activities I have always enjoyed and they have helped me immensely.

While I do not have children, with all the information at our

fingertips these days, you can bet IF a child of mine had CMT, I

would 'educate' him/her/them in 'age appropriate ways' and would

especially teach him/her/them to stand up and fight for themselves, in

the same way my parents did for me.

~ Gretchen

[Guest guest]

Caroline, Good one!

I denied having it for 28 years,when I finally got ankle supports! This was

after constantly falling, even at college and one time even walking on a broken

foot for a month. So, yes-It's exhausting denying your disability...Seems like a

thing I have to constantly learn relearn or remind myself, especially when I

want to hide my car disability hang tag.

Dawn