Re: . SND/Pat

[Guest guest]

Pat,

Just saw your note to Virginia and thought I might

comment on some of the things you mentioned.

My father had all of the symptoms you mentioned, with

the exception of the confusion. He remained sharp as a

tack right up until the day of his death.

He had terrible back pain, which we were told was

caused by the muscle spasms...the same thing that

caused the head/neck flex (dystonia). He tried many

meds for the pain (muscle relaxers, anti-spasmodics,

etc.) but nothing helped. About three months before he

died, he started getting massages every 2-3 days. That

helped the stiffness/pain some,if only for a little

while. He did have a couple of rounds of Botox

injections for his neck flex. They helped quite a bit,

but didn't bring his head all the way back up. My

father's speech was also very soft and slurred.

He also had trouble breathing, but no Dr. could ever

give us an explanation for that. They all said it

wasn't typical of MSA. He ended up using oxygen, as

needed, at home. He had the excess mucous problem,

too. My mother sometimes had to wipe it out of his

mouth.

Is your husband still able to get around on his own or

is he in a wheelchair? Once my father accepted the

w/c, he was much happier.

I don't think I'm really being much help, but wanted

you to know that you're not alone. If you have any

specific questions, please let me know. You can post

here or email off-list. Either way is fine with me.

:-)

in OK

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