Re: Family members denial of CMT

[Guest guest]

,

I am 56 and have a 27 year old daughter. My twin sister and I both have CMT.

She has a 18 year old daughter. Her daughter was diagnosed when she was 4 yrs

old. My sister was diagnosed when she was trying to learn to walk. What we have

in common with each other and our kids ...................

1. We could run, but it was slow and not for long as children and could not ice

skate

2. And my sister and I have both noticed in our kids that when they

fall asleep they have their hands in a fist. My daughter fell asleep in a chair

here about a year ago and I said, yep she probably has it.

But not pushing it on my part. At 27 she knows what she can do and what bothers

her. But does not talk about it much. I did remind her that CMT affects

different people in so many different ways at different times.

As for me, I slamed with it at the age of 50. I can progress so fast in a

year it would make your head spin. Then it slows down and nothing more for

another year or two and off I go again. Thats what has my Drs so confused.

Because this is a slow moving disease. They keep looking for something different

and nothing new shows up.

Just ask your family this, do any of the kids have their hands in a fist when

they sleeep?

It's very good question to ask.

Elaine

[Guest guest]

My sister is the same way when it comes to talking about it. Especially

when this past year, I had to try and contact the few relatives (especiallly

on my father's side) about what we had in our family. I was only 16 when my

dad died and back then, everyone was tight lipped about everything from

money to sickness. I finally got my sister to open up.

I had told her years ago I was taking antidepressants and she denied she would

ever need them. She didn't understand it was a medical condition and not a " I'm

tougher than anyone else! " ...issue.

She finally told me everything about her illnesses after I was diagnosed. She

had been taking antidepressants, and admitted they helped her tremendously.

also was diagnosed with rheumartoid arthritis this past year.

I told her to look into CMT, don't know if she did or not, even though we talk

at least once a month...I'll let her tell me on her dime.

Take care,

[Guest guest]

Hi -

I have never had any outward denial in my family from what I can recall.

However, my mother told me once that as children one of my brothers did not

believe that I had anything wrong with me. But that again is a childs view of

a sibling.

When my siblings were starting their families, I was a bit surprised and

somewhat disappointed that none of them ever really asked me much about the

disease. I guess I figured that they would want to know what my experiences

were having it growing up so they could be prepared should their children have

it.

I suppose that is a bit self-centered on my part. I spoke with my neurologist

about how I was feeling about this lack of interest on their part. He was very

helpful and compassionate at that stage and basically said " What we expect

people to ask of us, is not always what will happen. "

However, he said that he could write my siblings a letter to basically inform

them of the disease and how they could get information or be tested. I agreed

that he should do that. This way they are informed in a non-confrontational -

non-family method of what their options are.

It may seem a bit cold to have the physician send the letter but it does take a

lot of the emotions out of it. If they don't like the message then it is not a

message that came directly from a family member. It is given by someone in the

medical community that is simply trying to educate.

Just an idea -

Cheryl