Re: [MSA]

[Guest guest]

Dear Jim:

I am so glad that Aricept is helping Peg as it did Ken. I think the toughest time during Ken's illness was when the Dementia was at its worst. He told people he had never been married, and he acted as if I was some kind of enemy, even to the point of dialing 911 and telling them he was being poisoned. I found myself angry and hurt a lot of the time. He was particularly bad if we went any place away from home. I kept calling my children to come and help with him, and we all kept the doctor busy prescribing various tranquilizers that exacerbated the SDS symptoms but calmed him temporarily. After Aricept, all those symptoms disappeared, and everyone who saw him would come away saying, "Ken is back." Our doctor even forgot the troubles to the extent that when the Hospice nurse first called her for an Ativan prescription, she refused, saying that Ken was NEVER agitated and would not need it! The five year old bottle of Ativan in my refrigerator had that doctor's name on it, but Ken had been so reasonable since Aricept that the doctor didn't even remember the Dementia days. Even as he was dying, he was able to respond reasonably which certainly made the whole experience much easier for all of us.

Love,

Barbara

[Guest guest]

Hi, . Welcome, though sorry you are here.

My mother Joyce (71) had MSA-- she was diagnosed with PD and then 2 years

into it rediagnosed with MSA; she died within two years of that diagnosis

from complications.

When she received the PD diagnosis, I printed more material than she wanted

and arranged it by categories into binders and sent them to her. When the

MSA diagnosis arrived, I wasn't as anxious to inform her because the

prognosis was so poor. However, she turned to me one day and asked about her

prognosis. I stated her doctor's line at the time (which is true, after

all): This is individual and you cannot come up with such a prognosis.

However, I read the literature and knew that her form of MSA (SND) had a 2-8

year prognosis. I also told her that the drugs weren't going to be as

effective as they were for someone with PD and that MSA was more

progressive.

Then I decided to send her a one page piece on MSA that had all the info

right there. She had asked and she deserved to know. She never mentioned it

to me. I think dealing with the disease on a daily basis was consuming

enough. And you really don't know where the disease will bring you. I

believe my mother's case was hastened by her refusal not to continue walking

when she had no balance. She fell many times and broke many bones. Spent her

last two summers in rehab.

Has your dad asked about MSA? I think if he has expressed an interest in

knowing what it's about, then he's entitled to know it all (actually, I

think he's entitled to know all of it in any case).

Good luck, Debbie

[Guest guest]

hello my name is janice harrell,and you wanted me to

tell you a little about myself.well i was dianosed

with msa about two years ago.just to make this short,i

live in jax.fla.i go house to house because since they

made me quit work i can,t afford to have my own

place.i am legally blind,i have marfans sydrome.and i

also have msa,about two weeks ago they said that i

might have spinal cellubar atrophy,but they can,t do

the dna test because ins.won,t pay for it.so i have

been trying to find someone to help e because they

said that my children could have it.i don,t know what

to do i can,t find out anything.i hav4e trouble

walking,i shake real bad.iforget thing it just a lot

of things,i stay contisapate,sorry can,t spell.my legs

and foot turns in real bad so i look crazy.everytime

i go see my dr. all they do is give me more medicine.i

am now on 6 sinemet a day,3 balfan a day,2 paxil 20mi

twice a day blood pressure medicine,synothroid,astma

medicine.i hope this helps a little sometimes i have a

hard time typeing so if you can get back with me and i

will try to do better o.k. you can call if you want

..1- thank you for getting back with

me.janice harrell

--- Werre wrote:

> Janice,

>

> Everyone on the shydrager list has MSA (SDS) or

> symptoms of it, and someone here probably has

> exactly the same symptoms as you (or had them at one

> time). Tell us a little about your problems and we

> can help you better. I am a caregiver (since 1990),

> but we have many patients on the list

> also. Are you a patient or caregiver? What state

> do you live in? We do have some local groups and

> maybe you are near one.

>

> We do have many on the list who prefer to

> communicate one on one, but many like to know a

> little about you first. We don't need names or

> addresses, but we like to know things like what and

> when were the first symptoms, medicines you are

> taking, how much trouble you are having now,

> and your present needs.

>

> Take care, Bill and Charlotte

>

> =====================

>

> janice harrell wrote:

>

> > hello ya please write me let me hear from other

> > people.i don,t know who to talk to about any of

> > this.it would be so nice to talk to someone with

> the

> > same problem that i have.thank you janice h. other

> > e-mail is jmhrrll839@...

> > --- Jim Stark wrote:

> > > Hello All,

> > >

> > > It appears president Bush is not deciding the

> stem

> > > cell issue in a vacuum.

> > >

> > > God Bless,

> > > Jim Stark

> > >

> > >

> > <HR>

> > <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0

> > Transitional//EN " >

> > <!-- saved from

> >

>

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t

> > -->

> > <HTML><HEAD><TITLE>Bush Weighs Stem Cell Decision

> Amid

> > Reminders of Suffering</TITLE>

> > <META http-equiv=Content-Type content= " text/html;

> > charset=windows-1252 " >

> > <SCRIPT language=JavaScript> function

> pop_me_up(pURL,

> > features) { new_window = window.open(pURL,

> > " popup_window " , features); new_window.focus(); }

> > </SCRIPT>

> > <!--PLS_META-->

> > <META content= " Bush Weighs Stem Cell Decision Amid

> > Reminders of Suffering "

> > name=NYT_HEADLINE>

> > <META content= " By FRANK BRUNI " name=BY_LINE>

> > <META

> > content= " As he considers stem cell research,

> President

> > Bush is surrounded by reminders of friends and

> family

> > such therapy might have helped. "

> > name=FIRSTPAR>

> > <META content= " July 8, 2001 " name=DISPLAYDATE>

> > <META content=20010708 name=NYT_SORTDATE>

> > <META content=20010708 name=pdate>

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> > <META content= " The New York Times " name=SOURCE>

> > <META content= " " name=ticker>

> > <META content= " " name=ttl>

> > <META content= " " name=virtloc>

> > <META content= " Reproduction (Biological); "

> name=des>

> > <META content= " Bush, W.; " name=per>

> > <META content= " " name=org>

> > <META content= " White House (Washington, DC); "

> > name=geo>

> > <META content=200

> >

>

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> > <TABLE cellSpacing=0 cellPadding=0 width= " 100% "

> > border=0>

> > <TBODY>

> > <TR>

> > <TD vAlign=top align=left><IMG

> > src= " Bush Weighs Stem Cell Decision Amid

> > Reminders of Suffering_files/printlogo.gif " >

> > <BR><BR clear=all>

> > <H5>July 8, 2001</H5><NYT_HEADLINE type= " "

> > version= " 1.0 " >

> > <H2>Bush Weighs Stem Cell Decision Amid

> > Reminders of

> > Suffering</H2></NYT_HEADLINE><NYT_BYLINE

> type= "

> > " version= " 1.0 " >

> > <H5>By FRANK

> BRUNI</H5></NYT_BYLINE><NYT_TEXT>

> > <P><IMG alt=K

> > src= " Bush Weighs Stem Cell Decision Amid

> > Reminders of Suffering_files/k.gif "

> > align=left>ENNEBUNKPORT, Me., July 7 — As

> > President Bush inches closer to

> > a decision about federal support for

> embryonic

> > stem cell research, he is

> > surrounded by reminders — in Republican

> circles,

> > in his White House and

> > even in his family's past — of the lives

> > diminished by afflictions that

> > the research might help fight.</P>

> > <P>A sister, Robin, died of leukemia at age

> 3.

> > The Republican Party's most

> > beloved living hero, former President

> > Reagan, is wasting away with

> > Alzheimer's disease.</P>

> > <P>And the father of H. Card Jr., Mr.

> > Bush's chief of staff,

> > battled Parkinson's disease for years until

> his

> > death in 1994. Mr. Card's

> > mother developed Alzheimer's and died late

> last

> > year. Parkinson's and

> > Alzheimer's are among the diseases for which

> > treatment could perhaps be

> > advanced the most by the research.</P>

> > <P>Several people who know Mr. Card,

> including

> > two administration

> > officials, said his father's experience

> helped

> > shape his view about

> > research using cells from human embryos,

> which

> > they said he favored. One

> > official said he was certain that Mr. Card,

> who

> > was at some of the

> > president's White House discussions about

> the

> > issue, had shared his

> > feelings with the president.</P>

> > <P>But other officials and Bush advisers

> outside

> > the White House said that

> > Mr. Card had largely kept his feelings to

> > himself. Mr. Card, through a

> > White House spokesman, declined a request

> for an

> > interview.</P>

> > <P>Mr. Card's family story, like Mr.

> Reagan's

> > illness and many other

> > examples of suffering in Mr. Bush's

> immediate

> > and extended circles,

> > underscores the deeply personal nature of

> the

> > debate over federal support

> > for the research. It also suggests that Mr.

> > Bush's deliberations, no

> > matter what decision they yield, are being

> > influenced by more than

> > political ideology and abstract

> morality.</P>

> > <P> " It's one of the things that makes it so

> > difficult, " one of Mr. Bush's

> > aides said. Like other aides, this one said

> the

> > White House had been

> > bombarded by passionate pleas from people

> > arguing for or against the

> > research — and that the issue had been the

> most

> > volatile one Mr. Bush had

> > encountered since taking office.</P>

> > <P>But in this case, the official said, the

>

=== message truncated ===

__________________________________________________

[Guest guest]

Janice,

The medicines you are on sound like medicines many patients use. Are you on

Medicaid? It sounds as if you are. If so, ask for a review of the

policy on the DNA test. How old are your children? They can get the DNA test

on their own insurance if they are working. There is little more

they could do for hereditary OPCA than they are presently doing, from what I

have read.

Don't worry about your typing, we can understand it fine. Constipation can be

helped. My wife uses docsulate sodium (a stool softener) which

works for her. Others use various laxatives.

take care, Bill and Charlotte

janice harrell wrote:

> hello my name is janice harrell,and you wanted me to

> tell you a little about myself.well i was dianosed

> with msa about two years ago.just to make this short,i

> live in jax.fla.i go house to house because since they

> made me quit work i can,t afford to have my own

> place.i am legally blind,i have marfans sydrome.and i

> also have msa,about two weeks ago they said that i

> might have spinal cellubar atrophy,but they can,t do

> the dna test because ins.won,t pay for it.so i have

> been trying to find someone to help e because they

> said that my children could have it.i don,t know what

> to do i can,t find out anything.i hav4e trouble

> walking,i shake real bad.iforget thing it just a lot

> of things,i stay contisapate,sorry can,t spell.my legs

> and foot turns in real bad so i look crazy.everytime

> i go see my dr. all they do is give me more medicine.i

> am now on 6 sinemet a day,3 balfan a day,2 paxil 20mi

> twice a day blood pressure medicine,synothroid,astma

> medicine.i hope this helps a little sometimes i have a

> hard time typeing so if you can get back with me and i

> will try to do better o.k. you can call if you want

> .1- thank you for getting back with

> me.janice harrell

> --- Werre wrote:

> > Janice,

> >

> > Everyone on the shydrager list has MSA (SDS) or

> > symptoms of it, and someone here probably has

> > exactly the same symptoms as you (or had them at one

> > time). Tell us a little about your problems and we

> > can help you better. I am a caregiver (since 1990),

> > but we have many patients on the list

> > also. Are you a patient or caregiver? What state

> > do you live in? We do have some local groups and

> > maybe you are near one.

> >

> > We do have many on the list who prefer to

> > communicate one on one, but many like to know a

> > little about you first. We don't need names or

> > addresses, but we like to know things like what and

> > when were the first symptoms, medicines you are

> > taking, how much trouble you are having now,

> > and your present needs.

> >

> > Take care, Bill and Charlotte

> >

> > =====================

> >

> > janice harrell wrote:

> >

> > > hello ya please write me let me hear from other

> > > people.i don,t know who to talk to about any of

> > > this.it would be so nice to talk to someone with

> > the

> > > same problem that i have.thank you janice h. other

> > > e-mail is jmhrrll839@...

> > > --- Jim Stark wrote:

> > > > Hello All,

> > > >

> > > > It appears president Bush is not deciding the

> > stem

> > > > cell issue in a vacuum.

> > > >

> > > > God Bless,

> > > > Jim Stark

> > > >

> > > >

> > > <HR>

> > > <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0

> > > Transitional//EN " >

> > > <!-- saved from

> > >

> >

>

url=(0071)http://www.nytimes.com/2001/07/08/politics/08STEM.html?pagewanted=prin\

t

> > > -->

> > > <HTML><HEAD><TITLE>Bush Weighs Stem Cell Decision

> > Amid

> > > Reminders of Suffering</TITLE>

> > > <META http-equiv=Content-Type content= " text/html;

> > > charset=windows-1252 " >

> > > <SCRIPT language=JavaScript> function

> > pop_me_up(pURL,

> > > features) { new_window = window.open(pURL,

> > > " popup_window " , features); new_window.focus(); }

> > > </SCRIPT>

> > > <!--PLS_META-->

> > > <META content= " Bush Weighs Stem Cell Decision Amid

> > > Reminders of Suffering "

> > > name=NYT_HEADLINE>

> > > <META content= " By FRANK BRUNI " name=BY_LINE>

> > > <META

> > > content= " As he considers stem cell research,

> > President

> > > Bush is surrounded by reminders of friends and

> > family

> > > such therapy might have helped. "

> > > name=FIRSTPAR>

> > > <META content= " July 8, 2001 " name=DISPLAYDATE>

> > > <META content=20010708 name=NYT_SORTDATE>

> > > <META content=20010708 name=pdate>

> > > <META content=Politics name=SECTION>

> > > <META content= " The New York Times " name=SOURCE>

> > > <META content= " " name=ticker>

> > > <META content= " " name=ttl>

> > > <META content= " " name=virtloc>

> > > <META content= " Reproduction (Biological); "

> > name=des>

> > > <META content= " Bush, W.; " name=per>

> > > <META content= " " name=org>

> > > <META content= " White House (Washington, DC); "

> > > name=geo>

> > > <META content=200

> > >

> >

>

name=ARTICLE_TEMPLATE_VERSION><!--1234567891234567891234567891234567891234567891\

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> > >

> >

>

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> > >

> >

>

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> > >

> >

>

--><!--1234567891234567891234567891234567891234567891234567891234567891234567891\

23456789123456789123456789123456789

> > > --><!-- context ad setup

> > --><!--plsfield:NYT_INLINE-->

> > > <META content= " MSHTML 5.50.4616.200 "

> > > name=GENERATOR></HEAD>

> > > <BODY vLink=#444464 link=#000066 bgColor=#ffffff

> > > leftMargin=4 topMargin=4

> > > marginwidth= " 4 " marginheight= " 4 " >

> > > <TABLE cellSpacing=0 cellPadding=0 width= " 100% "

> > > border=0>

> > > <TBODY>

> > > <TR>

> > > <TD vAlign=top align=left><IMG

> > > src= " Bush Weighs Stem Cell Decision Amid

> > > Reminders of Suffering_files/printlogo.gif " >

> > > <BR><BR clear=all>

> > > <H5>July 8, 2001</H5><NYT_HEADLINE type= " "

> > > version= " 1.0 " >

> > > <H2>Bush Weighs Stem Cell Decision Amid

> > > Reminders of

> > > Suffering</H2></NYT_HEADLINE><NYT_BYLINE

> > type= "

> > > " version= " 1.0 " >

> > > <H5>By FRANK

> > BRUNI</H5></NYT_BYLINE><NYT_TEXT>

> > > <P><IMG alt=K

> > > src= " Bush Weighs Stem Cell Decision Amid

> > > Reminders of Suffering_files/k.gif "

> > > align=left>ENNEBUNKPORT, Me., July 7 — As

> > > President Bush inches closer to

> > > a decision about federal support for

> > embryonic

> > > stem cell research, he is

> > > surrounded by reminders — in Republican

> > circles,

> > > in his White House and

> > > even in his family's past — of the lives

> > > diminished by afflictions that

> > > the research might help fight.</P>

> > > <P>A sister, Robin, died of leukemia at age

> > 3.

> > > The Republican Party's most

> > > beloved living hero, former President

> > > Reagan, is wasting away with

> > > Alzheimer's disease.</P>

> > > <P>And the father of H. Card Jr., Mr.

> > > Bush's chief of staff,

> > > battled Parkinson's disease for years until

> > his

> > > death in 1994. Mr. Card's

> > > mother developed Alzheimer's and died late

> > last

> > > year. Parkinson's and

> > > Alzheimer's are among the diseases for which

> > > treatment could perhaps be

> > > advanced the most by the research.</P>

> > > <P>Several people who know Mr. Card,

> > including

> > > two administration

> > > officials, said his father's experience

> > helped

> > > shape his view about

> > > research using cells from human embryos,

> > which

> > > they said he favored. One

> > > official said he was certain that Mr. Card,

> > who

> > > was at some of the

> > > president's White House discussions about

> > the

> > > issue, had shared his

> > > feelings with the president.</P>

> > > <P>But other officials and Bush advisers

> > outside

> > > the White House said that

> > > Mr. Card had largely kept his feelings to

> > > himself. Mr. Card, through a

> > > White House spokesman, declined a request

> > for an

> > > interview.</P>

> > > <P>Mr. Card's family story, like Mr.

> > Reagan's

> > > illness and many other

> > > examples of suffering in Mr. Bush's

> > immediate

> > > and extended circles,

> > > underscores the deeply personal nature of

> > the

> > > debate over federal support

> > > for the research. It also suggests that Mr.

> > > Bush's deliberations, no

> > > matter what decision they yield, are being

> > > influenced by more than

> > > political ideology and abstract

> > morality.</P>

> > > <P> " It's one of the things that makes it so

> > > difficult, " one of Mr. Bush's

> > > aides said. Like other aides, this one said

> > the

> > > White House had been

> > > bombarded by passionate pleas from people

> > > arguing for or against the

> > > research — and that the issue had been the

> > most

> > > volatile one Mr. Bush had

> > > encountered since taking office.</P>

> > > <P>But in this case, the official said, the

> >

> === message truncated ===

>

> __________________________________________________

>

[Guest guest]

,

I would try to see a movement disorder specialist if possible. A normal

neuro gave Charlotte two years to live in 1996. Anne was given a year

to live about 1980 - she is still around or was on Monday. I believe

that speech therapy may be able to help her now that infection is gone

and she can get enough liquids by mouth to keep her hydrated.

See my wife's story below, Bill

Charlotte’s story

My wife Charlotte had fatigue and back pain as early as 1987-88. And by

1989 gave up her job at Exxon (managing service stations) as too

demanding. She was able to keep working and took a job managing an

office supply store which was only open 40 hours a week.

By 1990 she was having some difficulty walking and her handwriting was

becoming very small (microwriting). At first the walking problem was

attributed to a damaged disk (repaired in 1972). But she was sent to a

neurologist and they said Parkinson’s. She was put on Sinemet and

Eldepryl which helped greatly and she was able to function again. She

did have violent dreams which was attributed to the Sinemet. She felt

that getting rid of the rigidity was worth the violent dreams and

continued on the meds. Even with the Sinemet, she got progressively

worse and slowly increased her medicines.

Around 1992, the neurologist said she should see a movement disorder

specialist and sent her to Dr. Pincus (a PD expert) at town

University Hospital in Washington, DC. He said the Eldepryl was to slow

the PD and it was obviously not working, so he pulled her off that and

upped her to a Sinemet 25/100 every 2 hours. After several visits over

two years and MRI’s, he said she had a Parkinson’s Plus disorder and

suspected OPCA. By late 1994, she was having extreme difficulty walking

and Dr. Pincus’ office required a lot of walking, so we had to stop

going to him. By May 1994, she was unable to drive or stand long enough

to work and resigned. We were told by someone at Social Security that

she could not get SSDI as she was not “totally disabled.

Her regular neurologist had a husband who did research at NIH and

referred her to NIH (Dr. Hallet’s group). She went in for a full days

testing in early 1995 and got a diagnoses of MSA. In their report to

our neurologist, they said she had orthostatic hypotension and added

florinef to her meds. We found out that the person at Social Security

was wrong and she was eligible because it was a permanent disability and

she started receiving SSDI in October 1995. By that time she was in a

wheelchair, sitting or laying down. She could only walk with me

providing complete balance. By this time she had incontinence and was

using the disposable briefs. Charlotte had trouble with constipation

most of her life and it got worse. But she did not get much worse for

about three years.

The first of August 1998, my wife Charlotte went into the emergency room

of Fairfax Hospital with a severe blood infection, probably caused by a

UTI. By the time she came out 18 days later, she could not lift her

hand off the bed or speak. She had a PEG (gastric feeding tube)

inserted while she was in the hospital and was being fed all liquids,

food and meds through the tube. She went directly from the hospital to

the INOVA Cameron Glen Re-hab center in Reston. While there she got

excellent physical, occupational and speech therapy. Twenty seven days

later, she came out able to eat a soft mechanical diet (she still gets

most (95%) water and meds through the tube) and she gets about 50% of

her nutrition through the tube, but she is able to speak most of the

time and eat some food.

Even if speech is totally gone, they can stimulate throat muscles with

certain exercises like putting a small mirror in ice then massaging

either side of the back of the throat to get the swallow reflex working

again. Several people have responded to this type of therapy. The

speech therapist showed me how to do it and we did it several times a

day. Once the reflex is back, they can get some speech back. They

should also time therapy for about 30 - 60 min after the Sinemet to give

the most flexibility.

If she is taking Sinemet, you need to let the nurses know that protein

should not be eaten for at least 45 minutes after she takes the Sinemet

AND that the Sinemet should not be taken for 2 hours after eating

protein. Protein interferes with the levodopa in the Sinemet getting

into the brain and causes it not to work. This info can be found in the

sheets you get with the Sinemet or at:

http://www.health-center.com/english/pharmacy/meds/sinemt.htm

[Guest guest]

I say that it never hurts to get a second opinion. Based upon our own experiences, if you do go to another doctor and they give you the same message, then you will know that you have done everything for your mom that is possible.

If you do not get a second opinion, you will always wonder if you could have done more.

Best wishes to you. I know that your life is tough right now.

Marilyn in TN

Reply-To: shydrager

Date: Wed, 29 Aug 2001 18:18:42 -0400

To: <shydrager >

Subject:

I have written a few times about my mother and have received some very good advice.

You all give people the knowledge and strength that we need. My mom recently had to

get a feeding tube, as you may already know. She cannot speak and she has swallowing

problems. She is allowed nothing by mouth and is at high risk for aspiration. Many of you

said she could benefit from speech/swallowing therapy. Her doctors only thought it necessary

before the PEG tube and have since told my father that therapy wouldn't do any good.

One of her doctors said she will only live for 6 months. I was offended when he said that because

I can't believe that anyone can know that. We are contemplating taking her to Ohio to

consult another specialist-someone who knows more about MSA (some of you recommended

Dr. Chemlimsky). Her doctors have painted such a grim picture that I can't help but wonder if

this is the right thing to do. We keep thinking that things are just going to worse and that at

this point all we can do is keep her comfortable. I would love some advice.

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[Guest guest]

Dear Judy: You are right about some SDS patients having some idea what is

wrong, but not really feeling that things will worsen. Bob is sort of " in

denial " . Once in a rare while he will say - " I don't think I am getting

better " and then he will talk about going out and about. Sometimes he

forgets he is wheelchair bound and says " I will help you with the groceries " .

I just say - " Stay right there - I can handle getting them in from the car " .

I think Bob has a way to go yet before Hospice. Right now he is on PT

again. It is soooo helpful. He needs assistance with everything. I am

still looking into the " hoyer lift " and " Invacare Lift " . The PT thinks in a

few months it will probably be necessary.

Bob has a Pacemaker - which is a mechanical assist - but he says he

does not want any mechanical assists like a Trach or a Peg. We will see how

he feels if eating becomes more difficult or his breathing is difficult also.

Bob is still heavy - about 180 to 200 lbs so he must be getting enough

nourishment - though I think some of it is bloat. He enjoys all the things I

mash up for him and even fool him with roast beef I chop up small and melt

cheese over so he can't see I've chopped it up. Even then I have to remove

food from his mouth if it is too difficult to swallow. He loves pudding,

jello and icecream and they just slip down so that is good.

Judy - you do so good with Mark

Take care, Pat from Framingham MA