Re: None specificLarry -Working-MONICA

[Guest guest]

Hi Larry I am a Female 52 years old and have been a painting contractor for half

my life. I also have cmt. My husband also works our business. What we did was

not quit, we hired a worker. I can still work but around 3 p.m. I get really

tired and can't work anymore. I do all the est. and customer relations plus

making sure the paint is on the job plus I work also. I just try to get as much

done as I can in 6 hours and the rest the worker helps.So expanding is a great

help and hopfully our bodys will last a long time---MONICA

-----Original Message-----

From: LMinella@... <LMinella@...>

onelist <onelist>

Date: Thursday, February 10, 2000 5:50 AM

Subject: [] 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

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