Re: MSA Reseach Study & etc. Vera

[Guest guest]

Vera,

I understand the speech part. I have been like Fred is with his

speech now for almost a year. I am getting worse with it but

fortuneately I haven't had any trouble with swallowing. I am very

thankful for that. I just wanted to let you know that since his

speech is getting worse does not mean he will lose his ability to

swallow fast. The fear of this was in the back of my mind when I

began this speech trouble so I just wanted to let you know in case

you worried about it also. These rare diseases are so hard on

everyone. You both as well as the rest of this support group is in my

prayers constantly.

Lots of love and gentle hugs,

Belinda

> I took Fred to his Neurologist yesterday and we talked to him about

the

> study. He tolded us to go ahead and send in the form to Dr.Shults

and Fred

> feels better now after getting his Dr's ok.So I mailed the form off

to Dr.

> Shults this morning.

> Bill I also talked to Fred's Neurologist about ST for Fred, but he

didn't

> feel that it would help him. He could see how bad Fred was speaking

now, he

> couldn't understand alot of the stuff that Fred was telling him and

would

> have to ask me what he said. This is the first time that the Dr

wasn't able

> to understand him.

> Also tolded him about Fred getting alot of acid relux , so he gave

us some

> samples of AcipHex to try. These are pills that are suppose to help

with that

> and you only need to take one a day, but Fred tried his first one

last night

> and it didn't work.

> Also asked about the Comtan for Fred, but he also feels that it

wouldn't make

> any different for Fred. He just said that some MSA doesn't get any

worst then

> Parkinson and then another progress fast.I said and Fred has this

other and

> he just looked at me with puppy dog eyes and said yes.

> Most of last week we spend in the restroom because of constipation,

this week

> it's diarrhea. I do have to say I've never had anything keeping me

guessing

> the way MSA does. You get over one hill and then it has another.

>

> What a life we live.

>

> Hugs Vera

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