Newly diagnosed

[Guest guest]

Hi, my name is . My dad was diagnosed 3 years ago w/Parkinson's disease. He went down hill so fast that my mother swore up & down that he did not have Parkinson's disease, but no one would listen. On 8/23/02 mom put him in his wheelchair, when she did his BP dropped so low that he passed out. He had already been battleing a urinary tract infection for a couple of months. The dr. told her to take him to hospital. They admitted him that night, on 8/27/02 a dr who speacializes in Parkinson's disease came in & did her test stuff and asked us if we were ever told that he may not have Parkinson's. My mother went nuts! She had been trying to tell the dr's this for a couple of years. The dr told us about MSA & scheduled a nerve conductions study test, swallow test & another MRI. Nerve test was positive for nerve loss, MRI could not be done because he is so rigid that he could not lay down flat, & he failed the swallow test, they found that his food is going into his windpipe. We just found out exactly what he has and the dr's have called in Hospice. Dad is totally bed ridden, he has feeding tube in is stomach, he can't talk (makes noise, but can't form words), he coughs up "stuff" all the time, can't cough strong enough to really get anything up, has a foley catheter, has alot of muscle loss, he sleeps alot, snores, breathes heavy at times, has a very dry mouth. I could go on. I am reading alot about MSA, but I want to know what to expect next. When will we know that he only has days or hours left? My mom & dad live with my sister, about 45 minutes from where I live and I would like to know what I need to do & when. I'm frustrated & upset. Will he be here at Christmas? The dr's have told us no more dr's appts, no more ER visits. I'm trying to be strong for my mom, she depends on me more that my sister. But I feel an emotional breakdown coming on. I work, have 2 teenage girls at home, 2 grown sons, and a 3 1/2 yr old grandson that I keep everyother weekend. I would love to hear from some of you who have loved ones who have this or that have passed on because of MSA to know what is ahead. Dad can't even tell us if he hurts anywhere so that the Hospice nurse can give him Morphine. Please help a confused daughter trying to support her parents and still take care of my own.

Thanks

(grannyseu@...)

[Guest guest]

Dear : You raise a question about the lenght of life left to

your father--that is a question we all would like to know, but seldom

hear from a doctor as you have. Our neurologist is squeamish, I

think, about such predictions, but of course, he doesn't know

either. I'll be very interested in the replies from the

group. I wish you some serenity in your very harried, and worried

life. Lou ReynoldsAt 11:42 AM 9/5/2002 -0700, you

wrote:

Hi, my name is . My dad was

diagnosed 3 years ago w/Parkinson's disease. He went down hill so fast

that my mother swore up & down that he did not have Parkinson's

disease, but no one would listen. On 8/23/02 mom put him in his

wheelchair, when she did his BP dropped so low that he passed out. He had

already been battleing a urinary tract infection for a couple of months.

The dr. told her to take him to hospital. They admitted him that night,

on 8/27/02 a dr who speacializes in Parkinson's disease came in & did

her test stuff and asked us if we were ever told that he may not have

Parkinson's. My mother went nuts! She had been trying to tell the dr's

this for a couple of years. The dr told us about MSA & scheduled a

nerve conductions study test, swallow test & another MRI. Nerve test

was positive for nerve loss, MRI could not be done because he is so rigid

that he could not lay down flat, & he failed the swallow test, they

found that his food is going into his windpipe. We just found out exactly

what he has and the dr's have called in Hospice. Dad is totally bed

ridden, he has feeding tube in is stomach, he can't talk (makes noise,

but can't form words), he coughs up " stuff " all the time, can't

cough strong enough to really get anything up, has a foley catheter, has

alot of muscle loss, he sleeps alot, snores, breathes heavy at times, has

a very dry mouth. I could go on. I am reading alot about MSA, but I want

to know what to expect next. When will we know that he only has days or

hours left? My mom & dad live with my sister, about 45 minutes from

where I live and I would like to know what I need to do & when. I'm

frustrated & upset. Will he be here at Christmas? The dr's have told

us no more dr's appts, no more ER visits. I'm trying to be strong for my

mom, she depends on me more that my sister. But I feel an emotional

breakdown coming on. I work, have 2 teenage girls at home, 2 grown sons,

and a 3 1/2 yr old grandson that I keep everyother weekend. I would love

to hear from some of you who have loved ones who have this or that have

passed on because of MSA to know what is ahead. Dad can't even tell us if

he hurts anywhere so that the Hospice nurse can give him Morphine. Please

help a confused daughter trying to support her parents and still take

care of my own.

Thanks

(grannyseu@...)

[Guest guest]

,

Hospice must have some sort of person coming in to check on him. I would

ask that person about speech and physical therapy for him. The doctors should

have suggested it long before this, but there is a chance therapy can still

help him somewhat.

As far as time goes - there is no way to tell. Most people with MSA go peacefully

and often when you are not expecting it.

On communicating with him. Can he still blink his eyes? Use one blink for

yes and two for no, then ask questions. OR make up cards with one answer

on one side and another answer on the other side - he can look at the right

answer.

Take care, Bill Werre

Rhew wrote:

Hi, my name is . My dad was diagnosed 3 years ago w/Parkinson's

disease. He went down hill so fast that my mother swore up & down that

he did not have Parkinson's disease, but no one would listen. On 8/23/02

mom put him in his wheelchair, when she did his BP dropped so low that he

passed out. He had already been battleing a urinary tract infection for a

couple of months. The dr. told her to take him to hospital. They admitted

him that night, on 8/27/02 a dr who speacializes in Parkinson's disease came

in & did her test stuff and asked us if we were ever told that he may

not have Parkinson's. My mother went nuts! She had been trying to tell the

dr's this for a couple of years. The dr told us about MSA & scheduled

a nerve conductions study test, swallow test & another MRI. Nerve test

was positive for nerve loss, MRI could not be done because he is so rigid

that he could not lay down flat, & he failed the swallow test, they found

that his food is going into his windpipe. We just found out exactly what

he has and the dr's have called in Hospice. Dad is totally bed ridden, he

has feeding tube in is stomach, he can't talk (makes noise, but can't form

words), he coughs up "stuff" all the time, can't cough strong enough to really

get anything up, has a foley catheter, has alot of muscle loss, he sleeps

alot, snores, breathes heavy at times, has a very dry mouth. I could go on.

I am reading alot about MSA, but I want to know what to expect next. When

will we know that he only has days or hours left? My mom & dad live with

my sister, about 45 minutes from where I live and I would like to know what

I need to do & when. I'm frustrated & upset. Will he be here at Christmas?

The dr's have told us no more dr's appts, no more ER visits. I'm trying to

be strong for my mom, she depends on me more that my sister. But I feel an

emotional breakdown coming on. I work, have 2 teenage girls at home, 2 grown

sons, and a 3 1/2 yr old grandson that I keep everyother weekend. I would

love to hear from some of you who have loved ones who have this or that have

passed on because of MSA to know what is ahead. Dad can't even tell us if

he hurts anywhere so that the Hospice nurse can give him Morphine. Please

help a confused daughter trying to support her parents and still take care

of my own.

Thanks

(grannyseu@...)