Re: Condition's description unduly negative, dad says

[Guest guest]

For starters, I'd be interested to know if this father has CMT

himself. It doesn't sound like he knows what a lot of us actually

live with each day.

And secondly, it sounds to me that his son doesn't have CMT very

badly yet. Sounds like it's only minor at the moment especially if

he is very active, has a physically demanding job, doesn't need

orthos, hasn't had surgery and has adjusted to minor foot drop.

And what does he mean he won't be showing the article to his son?

His son is in his mid-30's, what's to stop the son finding the

article himself?

I'm sorry if I sound angry, I am a bit because it comes across to me

that the dad knows little but I am also in bad pain today, yes from

the CMT, just in case the dad reads this. BAD pain. There are

people who get pain from trying to do normal every day things.

Today, mine is from taking my daughter birthday shopping.

[Guest guest]

Very understanding Dad...cough! cough!

[Guest guest]

Actually, I think that in a way he is an understanding dad. He wants to protect

his child. Unfortunately he is trying to do this too late in life. I

understand him wanting to protect his child, I want to protect my two children

who also have CMT but I can't. They have it, they are going to have to deal

with what comes with having CMT. He still makes me angry though lol.

Megs

[Guest guest]

:

Please relax. Death is rare with CMT. It only occurs with those that have

serious CMT conditions, like those that have difficulty breathing due to muscle

weakness in the chest. Your son sounds very healthy anyway from what you have

wrote. Let him live his life to the fullest as we all do in this group.

Educating your son also helps him understand how others have to deal with this

disorder.

Marin, a parent with CMT, from Bridgeport, CT

[Guest guest]

I agree with what you say. CMT is not considered a fatal disease. In

fact there are some studies that show that people with CMT have

longer than normal lifespans. There are way too many people on some of

these sites who think every ailment they have from hangnails on down

to be connected to their CMT.

There are many people who lead normal lives with CMT. Some wear AFOs and some

don't. I chose not to dwell on the negative like some on these sites do. I had a

normal childhood and now a normal adulthood, I think, haha.

Bob

[Guest guest]

I believe this dad does not understand how much CMT can hurt.

However, isn't it human nature to only want to see the positive. In

a way, that mentality helps you strive to do more and sometimes to

come up with your own creative solutions.

Dawn