Thank you for sharing your stories.

[Guest guest]

In addition to my previous post;

(Hi everyone,

My husband has CMT and I would like to hear from men that are

entering or in the advance stages of this disease in the hopes of

getting a better understanding of the EMOTIONAL challenges they are

facing as they lose the ability to walk unaided and no longer have

full use of their hands. Any input or perspective would be greatly

appreciated.)

I would like to thank all of you that responded to my post and shared your

stories. I was very touched by your openness.

My husband has never met nor spoken with anyone else with CMT. He was only

diagnosed 3 years ago (age 35) when a surgeon refused to do

surgery on his feet until a neurological cause could be ruled out.

His feet had grown more and more deformed over the years and he had

trouble walking and was falling several times a day. Neither of us

could imagine how a neurological problem could deform a persons feet

and were annoyed at the unnecessary delay. Not only did we learn that a

neurological problem could cause his deformities, we learned that it had, and

sadly, it had progressed passed the usefulness of

surgery. We were completely blown away.

The second blow came as we learned that there is a fifty percent chance that our

children have inherited the defective gene. Our daughter is 17 and as far as we

can tell, symptom free. Our son is 8 and although somewhat on the clumsy side,

is not showing any deformity. We are holding our breath.

As for my husband, the last couple of years have been very hard, as

walking becomes more difficult (even with braces and now AFOs) and

the weakening in his hands, along with the falling, have caused him

to lose several jobs and ultimately, he had to change careers. I

sense that most of my husband's pride and self-worth came from being

the sole family provider.

As he has deteriorated, so has his income and he now earns half of what he use

to, requiring that I will now need to seek work outside the home. I think in

this, his self-esteem has taken the biggest hit. My husband is a man of very few

words, and has never been comfortable communicating his feelings, but I imagine

he must be very worried and uncertain about his future.

And knowing no one else with CMT, he must feel very alone, as well. (His family

members that we now know to which he inherited CMT had all past away many years

before he was diagnosed)

Again, I thank all of you that responded to my post and shared your

stories and advice with me. I will print a copy of each one and

present them together to my husband. In the gift of your stories, he

will know that he is not alone and perhaps this will help him to open up.