Newly Diagnosed

September 5, 2002

I can only tell you my husband's neurologist said in Dec. 2000 that he had alredy lived longer than most with this disease. It has been 1 yr and 9 months and he is still the same. We have been with hospice all that time and they are wonderful.

Ginger

September 5, 2002

Dear :

Since Hospice people have been called in, you may get some warning of

when your father is actually dying. Our Hospice Nurse noticed changes in my

husband's blood vessels in his legs about a week before he actually died and

told us about it. On the other hand, he may just go down for a nap and not

awaken as several on this list have. Your mother has agreed to have Hospice

help her, and I suggest you and or your sister schedule an appointment for

yourselves with the hospice Social Worker and perhaps the Hospice Chaplain as

well. These two people were amazingly helpful to me, and they were available

to talk whenever I needed it. This is a very hard, painful time for you and

for your family, and it is the time to allow those who can help to do it. I

am so glad that you do have the people from Hospice to help because they will

help your mother and you not to panic and call 911 or any of the other things

you don't want to do but might do if you don't have their help. Also, they

will really help your father pass over with a minimum of pain. In our case,

they brought oxygen and a sedative to the house as well as morphine if we

should need it. My husband did not seem to be in any pain, and he looked so

very at peace immediately after he died that I have been comforted by the

memory ever since.

We will all be praying for you and your family as you go through this.

Love, Barbara

September 6, 2002

,

I am sorry to hear of Your Dad's affliction. I have MSA also and thought maybe me two cents might help and might not.

Every MSA patient is different. I was diagnosed 2 years ago with Parkinson's and about a year ago for MSA. I have some of the similar symptoms of your Dad's however, I do not have problems swallowing or UTI.

To answer your question, I don't have the foggiest idea when your Dad may pass. Like I said, every patient is different. My suggestion is to listen to the Hospice folks. Maybe they can give you some guidance.

May God be with you. If you need to talk, my telephone number is

Dr. Ray

-- Newly diagnosed

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 goi ng 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@...)

September 9, 2002

Dear :

By the time you read this, your father may be gone. The shutting down

process is pretty normal I guess; at least that is the way Ken went. As I

told you in an earlier post, at the moment that he died, he became relaxed

and had a smile on his face. All the pain from this disease seemed gone. And

then, as I watched, it seemed as if I could see the soul leave and just the

poor body that had betrayed him was all that was left. It was a very

spiritual experience for me, and I think if you can arrange to be with your

mother tonight and tomorrow night, you may be able to experience it yourself

and become less angry. It is easy to feel angry and hurt when someone we love

is dying, and I felt much as you do, but being there and experiencing it

helped me a lot. I pray that it helps you too. As to being angry with

yourself for your feelings, what can I say? We feel what we feel, there are

no right or wrong feelings. You obviously love both your Mom and your Dad

very much, and since we often cover hurt with anger, I suspect you are really

just feeling the great pain that is normal under these circumstances. Death

of someone we love is just never easy, and I can really not say anything to

make it easy. I still miss Ken every day of my life, and I suspect I will

until I too die. I still miss my father, and he died fifty-one years ago. You

and your mother will get through this, but your lives will be forever

changed. We are all thinking of you and praying for your whole family as you

go through this.

Love, Barbara

September 9, 2002

I want to thank everyone for the support that they give so freely.

Especially to confused people like me. However I just got some news

from my mom. She said that dad has been " gurgling " & moaning all

night last night. She called Hospice they came out & started

administering morphine. They say that his body is starting to shut

down. His toenails are purple, his hands are in a permanent fist,

they say that is because his body is starting to get stiff & rigid,

his breathing is slowing down. It is now just a matter of days now.

per the nurse. I'm feeling empty, heartbroken but most of all I am

angry! Is this normal? I'm angry at alot of things but most of all at

myself for being an emotional wreck & I feel that I am not supporting

my mom like I should be. Thanks for listening to me and my woes. God

bless everyone of you with your fight with this terrible disease, and

to those caregivers who stand by you!

Rhew

September 9, 2002

,

The worst thing about this disease is that there is no " normal " .

If you possibly can, go and be with them both. That is the best thing you

can do for your father, you mother and yourself.

Our prayers are with you and your family.

Carol & Rob

Lexington, MA

Re: Newly Diagnosed

> I want to thank everyone for the support that they give so freely.

> Especially to confused people like me. However I just got some news

> from my mom. She said that dad has been " gurgling " & moaning all

> night last night. She called Hospice they came out & started

> administering morphine. They say that his body is starting to shut

> down. His toenails are purple, his hands are in a permanent fist,

> they say that is because his body is starting to get stiff & rigid,

> his breathing is slowing down. It is now just a matter of days now.

> per the nurse. I'm feeling empty, heartbroken but most of all I am

> angry! Is this normal? I'm angry at alot of things but most of all at

> myself for being an emotional wreck & I feel that I am not supporting

> my mom like I should be. Thanks for listening to me and my woes. God

> bless everyone of you with your fight with this terrible disease, and

> to those caregivers who stand by you!

> Rhew

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

September 9, 2002

Your darn right it's normal. Be angry. VENT! That is very important to you and your loved one. If you don't have anyone there to talk to, feel free to talk to me.

Call if you need to

Dr. Ray

-- Re: Newly Diagnosed

I want to thank everyone for the support that they give so freely. Especially to confused people like me. However I just got some news from my mom. She said that dad has been "gurgling" & moaning all night last night. She called Hospice they came out & started administering morphine. They say that his body is starting to shut down. His toenails are purple, his hands are in a permanent fist, they say that is because his body is starting to get stiff & rigid, his breathing is slowing down. It is now just a matter of days now. per the nurse. I'm feeling empty, heartbroken but most of all I am angry! Is this normal? I'm angry at alot of things but most of all at myself for being an emotional wreck & I feel that I am not supporting my mom like I should be. Thanks for listening to me and my woes. God bless everyone of you with your fight with this terrible disease, and to those caregivers who stand by you! RhewIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

September 9, 2002

,

It sounds as if your dad has pneumonia or congestive heart failure at

this point. The morphine will help stop any pain he may have. It

sounds as if you are saying that he has no quality of life left and

without quality of life, he will be better off with no pain. My wife

gave up when she lost quality of life and held on until the day after

Thanksgiving to leave. Let's hope your dad does not have to suffer at

this point. I know it is hard on you and your family, but it sounds

like it may be best for your dad at this stage.

You can do no more for your dad, so concentrate on helping your family

talk about what is best for your dad. Let him know that it is okay to

leave you as he will be better off.

Many of us have been through these same feelings of helplessness. You

must carry on with your life as your mom must carry on with hers.

Hospice does have grief counseling services - use them and if you have

kids, take them too.

Take care, Bill Werre

grannyseu wrote:

>I want to thank everyone for the support that they give so freely.

>Especially to confused people like me. However I just got some news

>from my mom. She said that dad has been " gurgling " & moaning all

>night last night. She called Hospice they came out & started

>administering morphine. They say that his body is starting to shut

>down. His toenails are purple, his hands are in a permanent fist,

>they say that is because his body is starting to get stiff & rigid,

>his breathing is slowing down. It is now just a matter of days now.

>per the nurse. I'm feeling empty, heartbroken but most of all I am

>angry! Is this normal? I'm angry at alot of things but most of all at

>myself for being an emotional wreck & I feel that I am not supporting

>my mom like I should be. Thanks for listening to me and my woes. God

>bless everyone of you with your fight with this terrible disease, and

>to those caregivers who stand by you!

> Rhew

>

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

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

September 9, 2002

Barbara,

Very well said. I think only someone who has been through this ordeal called

MSA can write such a compassionate letter.

,

You can add my prayers to everyone else's. God bless you for caring.

God Bless,

Judy & Jim Stark

Re: Re: Newly Diagnosed

> Dear :

> By the time you read this, your father may be gone. The shutting down

> process is pretty normal I guess; at least that is the way Ken went. As I

> told you in an earlier post, at the moment that he died, he became relaxed

> and had a smile on his face. All the pain from this disease seemed gone.

And

> then, as I watched, it seemed as if I could see the soul leave and just

the

> poor body that had betrayed him was all that was left. It was a very

> spiritual experience for me, and I think if you can arrange to be with

your

> mother tonight and tomorrow night, you may be able to experience it

yourself

> and become less angry. It is easy to feel angry and hurt when someone we

love

> is dying, and I felt much as you do, but being there and experiencing it

> helped me a lot. I pray that it helps you too. As to being angry with

> yourself for your feelings, what can I say? We feel what we feel, there

are

> no right or wrong feelings. You obviously love both your Mom and your Dad

> very much, and since we often cover hurt with anger, I suspect you are

really

> just feeling the great pain that is normal under these circumstances.

Death

> of someone we love is just never easy, and I can really not say anything

to

> make it easy. I still miss Ken every day of my life, and I suspect I will

> until I too die. I still miss my father, and he died fifty-one years ago.

You

> and your mother will get through this, but your lives will be forever

> changed. We are all thinking of you and praying for your whole family as

you

> go through this.

> Love, Barbara

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

September 9, 2002

I am the wife of a MSA patient. We have three adult sons and six wonderful

grandchildren, so I know how it is to want to helpf family. You have more

than one family.

The one thing that I would say to you is that this is a very important time

in your life and that of your folks. Cancel all other obligations/let

someone else " do it " for once. Go to your parents. Be loving and

supportive of each of them. Allow your selfthis experience. You can never

do it again. Don't waste a minute.

Marilyn in TN

>

> Reply-To: shydrager

> Date: Mon, 09 Sep 2002 19:10:44 -0000

> To: shydrager

> Subject: Re: Newly Diagnosed