RE: neck distonia and drooling and Botox

[Guest guest]

Elliot,

It is spelled dystonia and it IS a part of most Parkinson's Plus disorders.

Yes, it is common for MSA. Yes it is Botox, and yes it can help - usually

within three days of getting the shots. But they may have to try several times

to get the correct place and dose of the Botox. Neck braces are not the best

thing and physical therapy is usually better, although in some cases a brace is

the only answer. Ask the doctor about therapy in conjunction with the Botox

shots. I have also heard of Botox used to help drooling, but not familiar with

it. Did the doctor go over possible side effects of using Botox?

Take care, Bill Werre

---------------------------------------------------------------

Elliot wrote:

> Tomorrow my dad and I leave on a little drive to Houston, to get a

> second I believe Botox injection in the neck.. am I spelling that

> right? anyway. one apparently? unanticipated side effect is that his

> problem with drooling significantly decreased. I'm not sure if

> that's normal or not. I'm not sure if distonia (spelling?) of the

> neck muscles is normal or not for MSA? If so, how do y'all cope with

> it? My dad has a problem where his neck really hangs over to one

> side a lot and so we're working on different neck braces to

> compensate.

>

> -- Elliot " when I'm signaling it generally means I'm turning

> unconditionally so get out of the way!!! " yeah.. I'm one of *those*

> drivers.. :-)

>

> >Ken, on the other hand had no trouble swallowing consciously up until the

> >very day he died, but he drooled almost all the time for several years. He

> >had lost the automatic swallowing reflex along with the blinking reflex and

> >several others, but when told to do any of them, he had no trouble. it was

> >not the inability to swallow that made him drool, it was the loss of the

> >automatic reflex. On demand, he could swallow several pills at once and eat

> >big hunks of steak.

> > Barbara

> >

> >If you do not wish to belong to shydrager, you may

> >unsubscribe by sending a blank email to

> >

> >shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Elliot,

It is spelled dystonia and it IS a part of most Parkinson's Plus disorders.

Yes, it is common for MSA. Yes it is Botox, and yes it can help - usually

within three days of getting the shots. But they may have to try several times

to get the correct place and dose of the Botox. Neck braces are not the best

thing and physical therapy is usually better, although in some cases a brace is

the only answer. Ask the doctor about therapy in conjunction with the Botox

shots. I have also heard of Botox used to help drooling, but not familiar with

it. Did the doctor go over possible side effects of using Botox?

Take care, Bill Werre

---------------------------------------------------------------

Elliot wrote:

> Tomorrow my dad and I leave on a little drive to Houston, to get a

> second I believe Botox injection in the neck.. am I spelling that

> right? anyway. one apparently? unanticipated side effect is that his

> problem with drooling significantly decreased. I'm not sure if

> that's normal or not. I'm not sure if distonia (spelling?) of the

> neck muscles is normal or not for MSA? If so, how do y'all cope with

> it? My dad has a problem where his neck really hangs over to one

> side a lot and so we're working on different neck braces to

> compensate.

>

> -- Elliot " when I'm signaling it generally means I'm turning

> unconditionally so get out of the way!!! " yeah.. I'm one of *those*

> drivers.. :-)

>

> >Ken, on the other hand had no trouble swallowing consciously up until the

> >very day he died, but he drooled almost all the time for several years. He

> >had lost the automatic swallowing reflex along with the blinking reflex and

> >several others, but when told to do any of them, he had no trouble. it was

> >not the inability to swallow that made him drool, it was the loss of the

> >automatic reflex. On demand, he could swallow several pills at once and eat

> >big hunks of steak.

> > Barbara

> >

> >If you do not wish to belong to shydrager, you may

> >unsubscribe by sending a blank email to

> >

> >shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

One of my father's most troubling symptoms was the

dystonia of the neck. He had Botox injections which

gave him a lot of relief initially. The last round

wasn't quite as effective b/c the muscles deeper in

his neck had become affected and couldn't be reached

for Botox injections.

A word of caution about neck braces. We were told by

several Drs. that the patient can become dependent on

a neck brace and the " good " muscles can become " lazy "

and worsen the condition. My dad tried all kinds of

braces (soft, hard, etc.) and none did any good.

By the way, I have read that the neck (cervical

)dystonia is typical with the SND variety of MSA.

Hope that helps some.

MElanie in OK

__________________________________________________

[Guest guest]

One of my father's most troubling symptoms was the

dystonia of the neck. He had Botox injections which

gave him a lot of relief initially. The last round

wasn't quite as effective b/c the muscles deeper in

his neck had become affected and couldn't be reached

for Botox injections.

A word of caution about neck braces. We were told by

several Drs. that the patient can become dependent on

a neck brace and the " good " muscles can become " lazy "

and worsen the condition. My dad tried all kinds of

braces (soft, hard, etc.) and none did any good.

By the way, I have read that the neck (cervical

)dystonia is typical with the SND variety of MSA.

Hope that helps some.

MElanie in OK

__________________________________________________

[Guest guest]

Elliot, My mother Joyce (71, died 11/5/00) had a severe neck flex into her

chest. It was her most distressing symptom. She never tried Botox, though

someone on the list did and had good results.

She tried every neck brace in the world and even had one custom

made--nothing helped. We couldn't even get the head up by trying to lift it.

As Bill said, doctors aren't crazy about using braces because they don't

want the muscles to atrophy.

I don't know how my mom coped--how she swallowed all those pills and ate.

Good luck, Debbie