CMT, TV, and

[Guest guest]

Hi Everyone,

I haven't been on in awhile but need to tell you some good news

about getting the word out about CMT. This especially pertains to

anyone that lives in the Miami area for the news station, Channel 10.

Our station does a segment called Magnum's Force (the reporter's

last name is Magnum, thus Magnum's Force) where they try to help

people in need. They get donations throughout the year from big

companies and have even gotten people cars, homes, wheelchairs, help

with adoptions, etc.

Since I've been out of work waiting on disability, I wrote them because my teeth

are getting worse and I can't chew steak or anything hard and don't want to lose

anymore muscle mass and need to get more protein into my system. Vitamins only

help to a point.

So,I got a call a couple of weeks ago and the producer and cameraman came over

last Thursday and did a piece on me and CMT. What happens is they are going to

air it on Monday the 16th on the 6 and 11:00 news and then again on the weekend

edition. Two letters from my doctors were faxed to her before they even came,

so she new about it somewhat. I didn't know the questions she was going to ask,

but did ask what CMT was, how it affects my body, etc. She asked me to show her

where it was that my legs had no feeling, asked to see my hands (I have a large

lump on my left hand). I did the best I could but wished I knew ahead of time

so I had more " to the point " answers. I was SOOOOOOOOOO nervous!! I even

started to hyperventilate and

yelled " CUT! " ....lol I've only hyperventilated one other time in my

life!! I had a crying jag too.

I felt stupid but I'm sure it's going to help others out there that don't know

they might have CMT.

I also told them how I was misdiagnosed for years! Told them about

hammertoes and the high arches. Ladies and Gentlemen.....I did the

best I could and they are going to know about our CMT board, so this

should help alot of people.

Now what happens is some dentist out there somewhere or just people in general

either give their time or money to help me out if this all pans out. I feel

embarrassed my life is going to be out their like this, especially because the

keys is such a small place and I can just imagine going to the grocery store and

everyone staring at my legs and teeth....Oh well. What do you guys think? My

sister, daughter and Jeff thinks it's great.

I'm so nervous. Just knowing it will help others is good enough for

me, I'll deal with whatever comes up. I could use some input good

or bad.

Like I said, I know some of you are in the Miami area and it covers

alot of South Florida. See ya on TV on the 16th...lol....

Take care to everyone..

Love, (in the keys)