None specific

February 10, 2000

Hi everyone,

I also don't write much, just listen. I thought I'd throw my two cent worth

in about a couple of things. First, many, many thanks to all that do write in

regularly. You all have helped me learn more about CMT in six weeks than all of

the medical people I have seen in three years combined! Sadly though, it seems

I'm the one learning, diognosing, and ultimately deciding my fate rather than

" experts " . Plus I've got to learn so I can decide what is good for two of my

kids, ages 12 and 8, who are showing signs of having CMT as well. Do any of you

feel bad about passing it on to them, even tho' it isn't your fault?

Second, you have taught me that I haven't progessed as severely as some of

you have with regard to your levels od degenerazation. Two months ago I thought

I was falling apart, was the only one out there with this disease, nobody knew

what was going on or how far I could fall apart, or what to do. I'm a working

remodeling contractor in the Chicagoland area, and have been used to working

with my hands and whole body in general, and now I'm forced to come to terms

with the fact that in a short while I'm going to have to give up physically

working, and either expand my business to included others performing the work

for me while I sell and manage, or find another occupation. It all effects the

ultimate dollars earned, and that's the drag since the income has been reduced

and we were one of the majority that lived " hand-to-mouth " anyway.

Lastly for now, last week I found ankle braces at the local sports store

that have helped me stay on my feet longer and feel better in general (reduced

pain). They probably work similarly to AFOs. They are plastic and padding on

both sides of the ankle, strapped together with velcro. They really do work

well. Thought they might help someone out. I'm scheduled to see the MDA

clinic in March, and I know custom made AFOs are a strong posssibility for me,

and these braces are helping me survive until then.

Well, my essay is long enough, so talk to you all later!

Larry

February 10, 2000

Hi Larry. Peggie here. Did you get your CMT from one of your parents?

Do you blame that parent for your CMT? Didn't think so......

My Dad felt very guilty about giving us CMT, but , you know what? Without

our parents genes we wouldn't be here.... I know it is hard not to feel

some guilt, but everyone has something they pass on to their children, and

many things can be much worse them CMT. I worry about my grandchildren all

the time - but am so very glad to have them, that I am just so grateful for

them and that over-shadows my fear of them having CMT. Does that make any

sense? I guess what I am saying is that I have no more control over passing

CMT on then my father did. And I'd much rather have had my life as it has

been, more than anyone else that I know! The good and the bad. So, try not

to feel guilty about passing on your CMT - just be ever so grateful that you

have children - teach them love and respect and they will never hold it

against you!!

I am glad you have learned so much from the list about CMT. There are so

very many levels that everyone has - and they are all so different for

everyone! I probably went for over 20 years on one plateau and managed very

well, even though I had been paralyzed at age 19. And stress it seems is

the worse factor that brings out more symptoms. But, how do any of us live

without stress??? I worked in a very stressful job for years..... we have

to do what we have to do , and just handle it one day at a time. I am glad

you found some support for you ankles. The short leg brace has been a life

saver for me since I was 19!

Have a good day.... and join in whenever you feel like it!

None specific

> From: LMinella@...

>

> Hi everyone,

>

> I also don't write much, just listen. I thought I'd throw my two cent

worth in about a couple of things. First, many, many thanks to all that do

write in regularly. You all have helped me learn more about CMT in six

weeks than all of the medical people I have seen in three years combined!

Sadly though, it seems I'm the one learning, diognosing, and ultimately

deciding my fate rather than " experts " . Plus I've got to learn so I can

decide what is good for two of my kids, ages 12 and 8, who are showing signs

of having CMT as well. Do any of you feel bad about passing it on to them,

even tho' it isn't your fault?

> Second, you have taught me that I haven't progessed as severely as

some of you have with regard to your levels od degenerazation. Two months

ago I thought I was falling apart, was the only one out there with this

disease, nobody knew what was going on or how far I could fall apart, or

what to do. I'm a working remodeling contractor in the Chicagoland area,

and have been used to working with my hands and whole body in general, and

now I'm forced to come to terms with the fact that in a short while I'm

going to have to give up physically working, and either expand my business

to included others performing the work for me while I sell and manage, or

find another occupation. It all effects the ultimate dollars earned, and

that's the drag since the income has been reduced and we were one of the

majority that lived " hand-to-mouth " anyway.

> Lastly for now, last week I found ankle braces at the local sports

store that have helped me stay on my feet longer and feel better in general

(reduced pain). They probably work similarly to AFOs. They are plastic and

padding on both sides of the ankle, strapped together with velcro. They

really do work well. Thought they might help someone out. I'm scheduled

to see the MDA clinic in March, and I know custom made AFOs are a strong

posssibility for me, and these braces are helping me survive until then.

> Well, my essay is long enough, so talk to you all later!

>

> Larry

>

> ---------------------------

February 10, 2000