RE: Newbeee

[Guest guest]

Harold:

To start off welcome to the group. I'm sorry to see you have to come here to find us. I know how hard it is. We have to things that are a like already. One is that I'm the caregiver to my husband Fred who has I think the Combination- type of MSA. The Neurologist hasn't said, but from what I read it is that type. Also I have a Emma in my life, it is my mother. If your Emma is anything like the Emma in my life, then God has Blessed you so.

I read what Rose said to you. She is telling you as someone that has MSA. I think I would be the same as her and want to know what is what when it comes to the MSA if it were me. I know it's hard. This illness is always two steps backward and only one forward, but I guess I feel if you know what is going on or could go on, your ready to face it and do what has to be done. Then I run in with face forward most of the time. I'm sorry to see that Emma is progressing so fast, but Bill said once that it seems to progress fast the first 7 years and then slow's down. Fred was slow the first two years out of the five years he has had this illness. The next two years were a little faster, then this year it is really progressing. We still have two more year's before it should slow down again. I don't think anyone can say how long you can live with this illness, you can't go by what you read. We've seen that here, so many have lived long over the seven years that most paper tell you. I think it helps if you have a good outlook still and want to fight till you can't fight anymore. I know it's hard for you the caregiver, just know that there are alot of us caregiver here crying right along with you. Nothing is as hard to see a love one trying so hard to live a life that is a fight from the moment they wake till the moment they sleep. We all know the feeling and that why we're here to support each other. It help's to know that someone understand's.

Take Care

vera

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Subject: newbeee

My wife Emma has MSA_C. We were told to expect normal life

expectancy. I began to wonder how she could last 20 years which

might be normal for a 65 year old. I was having to change methods of

dealing with her first walking with a cane, then a walker, now

confined to a wheel chair, all with in a year or so period of time.

Moving her from the wheel chair to the portable stool and back to the

chair or to bed has been a challenge as she has less and less control

of legs and feet. I got the message below and it rang a bell. I feel

like I am just about out of changes that can be made, then another

idea comes.

Now I am finding out that If I read things correctly, she may have as

few years as 3, having had it for about 3 years. I guess we really

need to see some one who really knows about PD as their speciality to

get a good prognosis. I have always been open with her about the

disease but I have not told her of what I think the prognosis really

is. The reason I haven't is that it may do more harm than good, but I

am afraid someone may let it out. Any thoughts? Emma is taking an

anti depressant now and it is working, but I truly don't know how I

would handle it if she got as bad as she was before the Paxil. I know

God would give me strength when it is needed but is not something I

would look forward to.

Harold

[Guest guest]

Vera,

Sorry if I implied that was a standard progression as it is NOT. There

is NO standard progression with MSA. There do seem to be stairstep

progressions most of the time with sudden bumps which may come back a

little (probably caused by infections) and periods of little change.

But with Charlotte she had some minor problems from 1986-1990

undisgnosed as anything specific. In 1990 she got a dx of Parkinson's

which went fairly well with Sinemet until 93-94 when they suspected

OPCA. Balance was gone in 94 and she had to quit work DX at that point

was probably PD+. In 1995 she was diagnosed as MSA at NIH and got SSDI

- also went into the w/c full time. No real problems until the

infection in 1998 and when that cleared up, no major problems until

September, 2001 which cleared up by late October and she had a

reasonably good November until she died.

Yes there can be plateaus of as much as three years (maybe more), but

they are not predictable. With the MSA-C most people seem to be in a

wheelchair by the 5th year after a dx of a movement disorder. BUT as

you know getting a dx has been tricky for many people, so there is no

handy dandy guide to how it is going to work on any single patient. We

have had people die in two years (very few), but we have had people live

twenty years. The average still seems to be about ten years from a

diagnoses of a movement disorder - but 2 to 20 seems to be the range.

Careful watching for infection, exercise and attention to liquid intake

can prolong quality of life and life itself, so list members do have an

advantage. We all recognize symptoms of infection and there are always

a dozen people on the list who scream " it's an infection " , when we hear

symptoms.

Have a hug, Bill