Re: Swallowing Difficulities

[Guest guest]

Hi ,

My name is , I don't post very often on here, but I read

everything that is posted. I was diagnosed with CMT 1A in 12/92, I am

now 44. Two of my 3 childred, my mom, sister and a couple of her

childred also have it. I also have swallowing problems, I am the only

one in the family with swallowing problems.

I went for swallowing test in 7/06. I passed them, but as the girl that did

them put in the reports when I decribed what my problems are is that as long as

I am concentrating on swallowing I am ok.

I really have to pay close attention to chewing and swallowing. I also drink

with a straw much better then I do without one. They say that is unusual. I

think I pay more attention when I use a straw.

[Guest guest]

Hello All,

And, how many times do we bite our tongue or the side of our cheeks

because we can not feel where they are or they move to late or we

just don't have complete control of them when chewing? I've not been

able to swallow a mouthful of water on regular occasions as well.

What we need is more researchers with CMT so that they know what we

have trouble doing personnally. I would hope that the North American

Data Base would bring many of these problems to the fore. Paying

close attention is a continual task for me and many others. Without

eyes,I'd never make it.

Ed(hopeful)M from NH

[Guest guest]

Thanks for sharing, .

I know what you mean about concentrating on swallowing. I usually have the most

problems if I'm doing other things or even just letting my mind wander. To me,

it seems like I don't feel the food or liquid on the back of my tongue -- either

that, or I have a slowed

response to it and get choked.

I can remember as a child that I had a lot of trouble forcing myself to swallow

-- no food or anything in my mouth -- just trying to swallow in rapid

succession. Either that's better now or I don't

have those child-like urges to test silly things like that.

My mother, though, described exactly that as her current problem...sometimes she

just can't make herself swallow. She knows the food is there,she doesn't get

choked or anything, she just can't make her tongue...swallow...

[Guest guest]

Hi Everyone,

About swallowing, I thought I was out of my mind when I had trouble. Actually I

thought it was the medication I took. I thought the pain med slowed everything

down and had to literally try to drink water to start the swallowing process. I

couldn't do it voluntarilly. This is news to me.

(in the Keys)