Re: New Member> Jan

[Guest guest]

Jan,

I am glad that you found us but sad for the reason that made that

necessary. I am glad that your husband has a wonderful attitude. It

will help both of you. I think that our attitude does affect our

health. We have a chat time as I am sure you saw on the messages.

Please come and chat with us today. We would love to see you there

and be able to talk to you. There are some who come there to talk

that don't post very often or not at all. But all in all we enjoy the

time we have together to talk about whatever is troubling us or just

to kid and joke. Please understand that we are here to help you and

your husband in any way that we can. I do not have MSA but CBGD.

Cortico-basal degeneration. It affects my brain more, I think. Of

course my brain was affected before I found this out. I was just

putting that in before someone else commented on it. Rare diseases

are so close together that sometimes they really don't know until

they do an autopsy. What they go on mostly now after ruling

everything else out is the symptoms that we have. You probably

already knew that though. Well, remember chat from 3 to 5 on Sundays.

If you can't stay for long or can't come in right at 3 that's ok we

still would like you to come. If your husband would like to join us

we would like to meet him also.

God bless,

Belinda

> For the past 2 hours I have sat here reading your messages. I feel

> like I have been looking through a window, seeing and hearing

people

> I have never met but have been looking for over the past two years.

> My husband was diagnosed four years ago with cerebellar ataxia and

> three years ago that was changed to MSA. He is now in a wheelchair

> unable to balance, is catheterized, has severe sleep apnea, was

> hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is

> difficult to understand, has double vision even with prisms in his

> glasses, has edema in his legs.....and the list goes on. The worst

> part, no one seems to have heard of MSA. The best parts: he has

the

> most wonderful attitude and such an upbeat personality in spite of

> this awful disease. And, I have now found others who understand

and

> share their knowledge. I feel like I have been silently screaming

> for help for the last two years and now I have found that help.

> Thank you. Jan