Wiki articles

Luke and Obi-Wan are in a Chinese restaurant having a meal.
Skillfully using his chopsticks, Obi-Wan deftly dishes himself
a large portion of noodles into his bowl, then tops it off
with some chicken and cashew nuts. All this is done with
consummate ease you'd expect from a Jedi Master.
Poor old Luke is having a nightmare, using his chopsticks in
both hands, dropping his food all over the table and eventually
himself.
Obi-Wan looks at Luke disapprovingly and says,
"Use the FORKS, Luke."
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Morris tells his psychiatrist, "I am under a lot of stress. I keep
losing my temper with people and insulting them. You gotta help
me, doctor!"
The psychiatrist says, "Tell me about your problem, Morris?"
Morris looks at him and yells, "I just did YOU STUPID IDIOT!!!"
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
To Ponder....a moral question for you. This is an imaginary situation, but I think it is fun to decide what one would do.
The situation: You are in the Midwest, and there is a huge flood in progress.
Many homes have been lost, water supplies compromised and infrastructures
destroyed.
Let's say that you're a photographer out getting still photos for a news service, traveling alone, looking for particularly poignant scenes. You come across George Bush Jr who has been swept away by the flood waters. He is barely hanging on to a tree limb and is about to go under.
You can either put down your camera and save him, or take a Pulitzer Prize winning photograph of him as he loses his grip on the limb.
So, here's the dilemma and think carefully before you answer the question
below.
/
/
/
/
/
/
/
/
/
/
/
Which lens would you use?

Hang in there everyone!!!! I also am a caregiver. I am the main caregiver to
my father(78), who has final stage parkinson's. he was diagnosed 11 years ago
and when my mother passed away 1 1/2 years ago, my 11 year old son and I came
from Wyoming to Nebraska to care for him. I know the battles we caregivers go
through, but I also am fortunate because I am also a victim now. I was
diagnosed with SDS about three weeks ago. Because I have been through so much
with my father and have seen the bad along with the good, I can better
understand my disease and how it affects others that live with me and care for
me. I knew there was a reason God sent me to my father. He does work in
mysterious ways doesn't he. For all the bad there is a blessing there, we just
need to look a little deeper at times. God Bless all you caregivers. Hang in
there and try not to despair!!!!
"Suzanne Grimmesey-Kirk" <suzkirk@...
This forum is so wonderful in so many ways, but especially in the manner which
you describe below - to know that there is always someone out there who will
truly understand and respond.
Those who are primary caregivers carry a strength beyond compare. I think the
support of this group is a catalyst for that strength to kick in at times when
one might feel completely drained of any energy. God bless all of you.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Hi Linda:
Isn't it sad that they are others out there in the family that can
make it so hard on us and here we are just trying to get by day by
day to help the one we love live a little easier.Your right it isn't
easy on us and that's what is so nice to have a forum like this,
where we have a family that does understand, It really does make the
different in our life.
God Bless you
Vera
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John,
Even though I am new to this group, I also appreciate your words and your
caring thoughts that you convey to all of us. I posted when I was first
diagnosed about three weeks ago and since then have just sat back and read
what others say about this disease. I have learned alot just by what you and
others like you say here in this group. I thank you for all th einput you have
given me. Because of people like you, I don't feel scared and alone any more.
Meg
FVJAMES@... wrote:
John:
Believe me you are really a blessing to this group. Your words have
lifted me up when I was down. Your mother should be very proud of
you , as are the friends you have here.
It's really a joy to know that there are people out there like you
that are having a hard time , but are still willing to help other's .
Thank You so much for being a friend.
Vera
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John:
Believe me you are really a blessing to this group. Your words have
lifted me up when I was down. Your mother should be very proud of
you , as are the friends you have here.
It's really a joy to know that there are people out there like you
that are having a hard time , but are still willing to help other's .
Thank You so much for being a friend.
Vera

Blanche:
I"m sure you did the right thing with your huband. People often don't
understand why we do things, but until they have walked in our
shoes , they won't ever understand. I'd rather keep Fred here at
home, but there may come a day that I will have to fine somewhere for
him. It won't be because I can't handle it, it will be because it is
the best thing for him.
I'm glad that your family understands now. They should.
hugs
Vera

This forum is so wonderful in so many ways, but especially in the manner which
you describe below - to know that there is always someone out there who will
truly understand and respond.
Those who are primary caregivers carry a strength beyond compare. I think the
support of this group is a catalyst for that strength to kick in at times when
one might feel completely drained of any energy. God bless all of you.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Hi Linda:
Isn't it sad that they are others out there in the family that can
make it so hard on us and here we are just trying to get by day by
day to help the one we love live a little easier.Your right it isn't
easy on us and that's what is so nice to have a forum like this,
where we have a family that does understand, It really does make the
different in our life.
God Bless you
Vera
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Hi Linda:
Isn't it sad that they are others out there in the family that can
make it so hard on us and here we are just trying to get by day by
day to help the one we love live a little easier.Your right it isn't
easy on us and that's what is so nice to have a forum like this,
where we have a family that does understand, It really does make the
different in our life.
God Bless you
Vera

Regarding the elections in Florida, as a friend said recently, "At least we
have this without threats of revolution and soldiers carrying machine guns
all over the place like in some countries."
December - The Month of Christmas
. . . A bright sunny morning. You're young, healthy, full of life, and
looking forward to Christmas in a few weeks and going home to see your mom,
dad, and sister. Maybe it'll snow while you're there. Where you are now,
it will never snow, but there are flowers everywhere and lots of good
fishing. It's Sunday, and this afternoon you and your friends will go to
the beach. It's not supposed to rain. You look to the east - no rain
clouds. Life is good. You look to the west. . .
...
...
...
It is December 7, 1941, at 8 o'clock in the morning. You are on a harbor
overlooking the Pacific. Life has suddenly changed.
http://dizzy.library.arizona.edu/images/USS_Arizona/links.shtml
Proud to be an American,
Donna Waggoner

Thank you Donna for the reality check. Periodically we all need to remember
the important reasons for what we are and what we were! My father fought on
Guadalcanal during WWII. He was one of the first marines to hit the island.
December 7th has always held a special meaning to us and we will never forget.
Meg in Nebraska
"Waggoner, Donna" <d-wagg@...
Regarding the elections in Florida, as a friend said recently, "At least we
have this without threats of revolution and soldiers carrying machine guns
all over the place like in some countries."
December - The Month of Christmas
. . . A bright sunny morning. You're young, healthy, full of life, and
looking forward to Christmas in a few weeks and going home to see your mom,
dad, and sister. Maybe it'll snow while you're there. Where you are now,
it will never snow, but there are flowers everywhere and lots of good
fishing. It's Sunday, and this afternoon you and your friends will go to
the beach. It's not supposed to rain. You look to the east - no rain
clouds. Life is good. You look to the west. . .
...
...
...
It is December 7, 1941, at 8 o'clock in the morning. You are on a harbor
overlooking the Pacific. Life has suddenly changed.
http://dizzy.library.arizona.edu/images/USS_Arizona/links.shtml
Proud to be an American,
Donna Waggoner
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Dawn,

That does point up one problem with MSA. We often blame things on MSA, when in reality the patient can catch other diseases, the same as anyone. It is best to see a doctor when there is any new problem immediately. I try to space Charlotte's visits to the GP (blood tests, etc) and neuro visits so that she sees a doctor about every two months. But if anything comes up, I can see the GP on about 2-4 hours notice.

Charlotte went through the change of life after getting this disorder, so that too was an experience. :o) Hot flashes are not a symptom of MSA :o) Don't be afraid to use your GP or primary care physician (PCP). Once they know you have MSA, they can still treat you for normal problems and will probably be able to distinguish between MSA and other problems.

Take care, Bill and Charlotte

Oh Pam I did not know Sam, as I do not know many of the people on the
"family" list now. I feel so very out of it, but I do want people to know
that as a spouse who lost the love of my life in Sept of 99 after a five year
battle with MSA, I am so sorry and feel your loss and you are in my prayers.
I feel very separated from "the group". I do not know many of the people in
the "group" now cuz those whom I knew have since gone to be with our Lord.
I know that you, Pam have kept in touch and I praise you for that. I know
that I have told our children and our whole family that instead of Christmas
presents----of which none of us really need anything----that I am writing a
check to Vanderbilt for MSA research in the name of D. MICHAEL POAST (my
precious husband of thirty years) and that will be our Christmas. Our
children are thrilled and think that to be a really good thing. Maybe we
should all do that. Maybe this damn disease will find a cure with our help.
Much love to you, becky from cincy

Has anyone had any problems with extremely red eyes? Is this a
symptom of MSA? Thanks for your help.
Trevada

Celeste and I are going to see her neurologist on Friday morning. Her two biggest problems right now seem to be inability to sleep, both getting to sleep and staying asleep, and constipation. We want to talk to the doctor about meds for both of these problems. She is currently taking Restoril to sleep but with moderate success. She is taking nothing for the constipation now and it drives her crazy. Any suggestions would be greatly appreciated.

Dawn - Celeste O'Neill's sister.

Greetings Dawn!
WARNING! DANGER WILL ROBINSON!
Taking medications for undiagnosed sleep problems can KILL !! I am very
serious about this. Obstructive Sleep Apnea is a common problems with some
neurological disorders. Taking a medication to either relax muscle tone or
inhibit arousals can litterally cause a person with OSA to suffocate.
Be certain to have sleep disorders diagnosed by a sleep specialist. Most
neurologists do *not* know all that much about sleep disorders.
Sorry to sound overly dramatic. But it really is that serious. Premature
death from heart failure and stroke are common problems with OSA.
Regards,
=jbf=
John B. Fisher

To all,

Some of you may remember my sister Celeste was diagnosed with MSA this year. As most of you know the disorder is so bizarre you never know what to expect. Last week Celeste had told me on the phone how concerned she was about her feet. She told me they were crusty. She said it started on the bottom of her feet and now had worked it's way to the sides and was moving towards the top. We decided we would talk to the neurologist about it the following week. In fact, Celeste even sent him an e-mail about it. Well a couple days later I stopped by her house to visit her in the evening while her husband was out. She started to take off her Jobst stockings to show me her feet. She said I want to show you my feet. I am so worried about them. I was thinking to myself, "Oh no! What now." After she got her stockings off, she laid on the couch and put her feet in my lap. I could see immediately what she was talking about. I studied them top to bottom, looked between her
toes and announced the diagnosis. "Celeste, you have a ravaging case of athlete's feet." Having hung out at the gym for years I recognized it immediately. Celeste has been doing water therapy and obviously picked it up at the pool.

We sat and laughed for 10 minutes to think of all the challenges all of us face and to think we were worried about athlete's feet. To think having an MSA diagnosis doesn't exempt you from athlete's feet. After all, people with MSA should get a pass of all minor things such as athlete's foot, hangnails, fever blisters, etc. etc. Don't you think? Thought you would enjoy the story. And I have to hope Celeste does not read the postings in the next couple of days. We are hoping when we see the neurologist on Friday, he will forget the e-mail about Celeste's feet. The Desenex seems to be doing the trick.

Best to all, Dawn - Celeste O'Neill's sister

Nancy/Pam,
What a great site! I especially liked the exercises (with pictures to
boot!) and the diet info. Thanks for sending it.
Rose

Judy,
I hope Mark is doing better. I just wanted to remind you that Mark may be
able to use a valve or cap on the end of the trach for speaking purposes as
his breathing progresses. If the doctors haven't mentioned this, please ask
about it.
Is the speech therapist still working with Mark? If so, ask him/her about
it. A good speaking valve that's often used is called the Passy-Muir
Speaking Valve (PMSV). It simply fits over the end of the trach tube (the
air in the cuff/baloon that's inside the neck must be deflated first---if
Mark has a cuff/baloon on his trach tube) and redirects the airflow from the
lungs up through the throat and into the mouth---instead of in and out of
the neck.
Actually, the PMSV can also help swallowing to some degree because of
changing the air pressure in the throat to help some aspects of swallowing.
Mark may not be ready for a valve yet; I just wondered if you knew he may
have that option.
Right now, is he able to write or point to letters on an alphabet board to
get what he needs? If not, again ask the speech therapist for help.
I'm glad you'll have family with you soon; that will surely be a big help.
Please tell Mark we are all thinking of him and wishing him a speedy
recovery.
Take care,
Rose

Mark,
I have been having this for the past 8 years .. have been on heart meds
(Cardizam CD) ... was cked at Yale after my last hospitalization for the
ablation procedure.... but mine is not eligible (or wasn't at the time)
In order to have that procedure, the 'firing up' of the heart in a specific
area is needed ... and from what I understand, this should help your mom and
her quality of life ... also the pacemaker will keep it ticking ;-]
the result of these episodes, is the enormous amount of energy that is
required by the body when the tachycardia happens ... and the longer and
longer period of time it takes to recover your energy afterward ... so she
may be dragging a lot after 10 events like that ....
it should get better - a lot better - after the heart procedure ....
so hang in there and be supportive and understanding ... it's a wearing
thing ...
cheers
sheila

Friends,
May name is Mark. My mother (age 64) was mis-diagnosed with
Parkinson's about two years ago. Summer of 2000 she was diagnosed
with MSA at Mayo Clinic in Rochester,MN. Her main complaint has been
one of episodes of a "racing heart", which usually seem to start in
the early morning hours ( 2-5AM) and can last for up to 12 hours. The
doctors seem to indicate this is an atrial fibrullation, and have
recommened laser ablation followed by pacemaker. She is taking a
heart med (don't remember what), but is really suffering with this--
over 10 episodes in the month of November 2000.
Can anyone share any similar experiences--I am concerned as to the
future, and the possibility of a mis- or missed diagnosis.
Any thoughts or advice will be most appreciated as my family
struggles long distance to deal with these issues.
Thanks,
Mark

I'm sad to report that Sam Convissor's wife Carole passed away on Monday
morning. I'm sure he'd welcome your prayers and words of
encouragement. His email is convisor@...
Love,
Pam

Back belts offer no benefit for back breaking work
NEW YORK, Dec 05 (Reuters Health) - Wearing a back belt
on the job is a waste of time when it comes to reducing
back
injury or low back pain, researchers from the Centers for
Disease Control and Prevention report.
In one of the largest studies of its kind, researchers
looked
at back belts made of light, stretchable nylon worn by
retail
workers who were responsible for lifting and moving
merchandise.
People who wore back belts daily or up to twice per week
had the same number of back injuries or episodes of low
back pain as those who never wore back belts or wore them
once or twice per month, according to Dr. James T. Wassell
of the CDC's National Institute of Occupational Safety and
Health, and colleagues.
Workers at stores that required employees to wear such
belts reported just as many injuries as workers at retail
stores that had no such policy, the report indicates.
"By directly interviewing employees about their
belt-wearing
habits, our study more closely measures typical belt use
in
the workplace rather than implied belt use based on store
policy," Wassell and colleagues write.
The investigators interviewed roughly 6,300 workers who
reported wearing back belts on the job and followed their
back belt use and complaints of back injury or low back
pain
for 2 years.
"We found no effects of back belt wearing in various
subgroups (including) employees with and without a history
of previous back injury, employees with consistent
self-reported belt wearing habits...and employees with the
most strenuous jobs," the authors report in the December
6th issue of The Journal of the American Medical
Association.
"The findings suggest that back belts should be viewed as
no more than an option in apparel," Drs. Nortin M. Hadler
and Timothy S. Carey of the University of North Carolina
in
Chapel Hill write in an accompanying editorial.
"Any recommendation to wear back belts when exposed to
tasks with this range of physical demand should be met
with
skepticism; the burden of proof should be on those who
might still advocate them," Hadler and Carey conclude.
SOURCE: The Journal of the American Medical Association
2000;284:2727-2732, 2780-2781.
© 2000, Reuters Health Information Services

Pam, and all,
When I took that course, they told us to play the fuegue (sp?) music as it is
relaxing and helps you get into the visualization mood.
Did they also give you the desk method? You sit straight up in your chair and
tense every muscle in your body as you breathe in. Then slowly breathe out and
concentrate on relaxing every muscle in your body. You should do this several
times, but you can do it at your desk and it works. (And I had one man working
for me, that I would have liked to pound almost every time I had to try to
communicate with him). :o) I fired him :o) and he was a government worker.
Take care, Bill and Charlotte

I went to a seminar the other day at work called "Stress Elimination
Technology". They taught us a visualization exercise to practise and
eventually when you get good at it you can use it to quickly defuse a
stressful situation.
Here's how to do it:
1. Close your eyes and breathe deeply and focus in your mind on the area
around your heart for a few breaths.
2. Once you feel more relaxed, visualize a scene that you've already
experienced in your life where you felt warm feelings such as love, joy
or gratitude.
3. Jump into the scene as if you are reliving it and stay focussed on
reliving that one scene.
You'll start to feel the same warm feelings you experienced in the past.
This relaxes your heart and boosts your immune system.
If you start doing this exercise 5 times a day for just 1 minute each
time it will greatly improve your stress levels. It's called the "Heart
Lock-In"
technique which is described more completely in a book called
The HeartMath Solution see: http://www.heartmathsolution.com/intro.html
I hope you'll all try this and let me know how you do.
Take care,
Pam

Vera,
I am waiting for Dr to return my call. Seems to take forever. His b/p was
up and very high yesterday while day before it was dragging the bottom.
Never know what to expect. He felt so low Monday that he said when he went
to bed "If something happens tonight, know I'll be waiting for you on other
side." Wow.
Will keep you in touch.
Love, Mary

bill
One reason that she doesn't believe the doctors is because she went
to one doctor for a tremor in her head, he dx parkinson and put her
on meds for it. Fred's sister didn't believe it was parkinson and
took her to another doctor for a dx and he told her that it wasn't
parkinson and so she went off the meds , the tremor is back and it is
getting worse. If it's not parkinson, then it is something else . The
tremor was better when she was on the meds.
still hanging in there
Vera

Debbie:
I didn't know your mother and sorry that I didn't get the chance to,
but from what I have seen, she must of been a wonderful person. One
that would of been a blessing to know. Not only did she think of
others, but she has rised a daughter in you that has her same values.
My prayer are with you, I know that it has to be hard right now , but
you are still there for other.
Vera

Good! See you then. Your mom also replied that she is coming - J

Mary Ann,
Sounds as if you are helping your mom a great deal by doing the things you do.
Hang in there.
Take care, Bill and Charlotte

Hi Judy,
Count me in; at least at this point in time, I'm planning on being there. I
have no idea what the weather's supposed to be like, so that part we'll wait
and see.
See you Saturday,
Rose

Hi all
Thanks for the sending me the diffenition of 'Ataxia'.
When Mom walks in the water with me sometimes she wants to try to
walk without me holding on to her. At times she will loose her
concentration and start taking tiny steps in one direction and then
start to go under before I can grab her. She has a very good sence of
humor. I tease her and say 'Oh your doing that drunking salior thing
again'. About going under the water. Mom needs to go under the water
several times she says it relieves her headache and dizy feeling. It
makes her feel good if the pool water is cool. If the pool water is
to warm she want me to pour cool water on her head. The other folks
in the pool have gotten use to me dunking Mom under the water. Mom
take a big breath and plumps down. But she won't go under so I have
to push her down until her bottom touches the bottom of the pool,
then she pops right up and I wipe the water from her face with a
cloth.
Mom had an eye appointment today, my sister took her to it in the
cities. Anyway her eyes are not getting enough moisture. She is not
blinking enough. And in the Nursing Home they do not wash her eyes
good enough there is a lot of crud build up in her pore ducts and she
has got a virus in her eyes. The whites of the eyes are not white, a
bit yellow. So antibotics are to be given, artificial tear
administered and she is to have her eye lids scrubed with Johnsons
Baby Shampoo. March of'99 Mom had a cateract removed and a tare
during surgery resulted in blood staining her cornea. So she has had
about 5 surgeries on that eye, 3 of them were lazer to clean up the
blood. She still may need to have a cornea transplant. What are
things I should be aware of that concern her eyes with Shy-Drager.
This Shy-Drager of Moms has taken over my life. I'm not employed,
which is very stressful on myself and my husband. But I can only give
her 3 days a week hands on so to speak. I'm trying to get mentally
healthy again, by working out at the YMCA when I'm not with Mom. Oh
and Paxcel seems to be helping me cope. She really needs someone with
her the days I'm not there. Sometimes she is so sick she doesn't look
like she'll last the night. Other times she looks and feels so good I
think she has several years yet. The Nursing Home keeps telling me
they can't do one on one with her. I can't do anymore, and retain my
sanity. I do all her errons, bills and looking stuff up on the
internet and so much more.
I am so glad there are people to talk to about Moms situation, and
mine.
Thanks, Mary Ann

Bill
We can tell you are missing all of us who normally kept you on your
toes. I can only do it in short spurts now, in fact it is past my
bedtime now. I've been trying to do some shopping and looking at
bridesmaid dresses on line for Kathy. I haven't found much that we
haven't already seen.
I think she is thinking that trip to LasVegas is sounding better all the
time!!!!! =:
I'm calling it a night for now. The little B boy will be with me
tomorrow night as his mom has class. So long from the cold flint hills
Sally

Jim,
I'm sure you are right, but here on the list and in emails often shorten it to
trach when we actually mean the trach tube itself. Many of the "PEG" tubes we
refer to are actually feeding tubes as a PEG is a specific type. :o) plus even
an engineer like me can't spell those things :o) I don't use the proper names
for shrinks either - because I can not spell them :o)
However, I could probably fix their X-ray machine. And I'll bet they can not
tell you that an X-ray is the energy formed by an electron being knocked out of
it's orbit and going back into it's orbit. I do know how to look up medicines
online, but even their I often face problems with reading the descriptions as I
do not know what some of the specific terms mean.
Most of us are not doctor's or even have any medical training and welcome
insights into how doctors think. I have learned to speak in terms of cerebellar
ataxia, dysphagia, dyskinesia, orthostatic hypotension and things like that just
to get the doctor's attention. Keep reminding us of how doctors phrase things,
it does help in talking to the doctor.
Take care, Bill and Charlotte

Sheila

Both the perrin.exe and the UPGRADE INTERNET2 messages are hoaxes - see:

http://www.symantec.com/avcenter/cgi-bin/vsearch.cgi

for info on them. Whole some of the other viruses mentioned are real and some are hoaxes, they are old and hopefully you have a virus checker. Many viruses infect your computer as soon as you read the email unless you have a virus checker that gets them first. Don't believe everything you read in email,

Take care, Bill and Charlotte

Maryann
Remember too, the brain NOW can only do 1 thing at a time. If your mom
is walking and thinking about something else she will lose her train of
thought quickly.
However, it may help her to say out loud, left, right. Sometimes the
thought process will function along with verbal cues. Also, as some of
us have noticed, marching music also sometimes helps the body to keep in
step and move. This may be due to rhythm but it also may be due to the
right side of the brain transmitting information differently than the
left and it sometimes helps to use the right side to process
information. Anything is worth a try if she is willing.
Good luck
Sally in KS

JVM
Political ............. I've given up!! It must be a nightmare there by
now!
How far south are you going? We are waiting for snowflakes right now
......... brrrrrrr.
Sally

John
Where does your Mother live?? I'd be glad to send mine to live with
her, they could keep each other busy. Mine wouldn't remember from one
hour to the next what yours said so they would both be happy.
Aren't relatives fun!!! =:
Sally

Pat
I'm glad we could help. It sounds like Bob has many eye problems other
than the MSA which must make everything that much more difficult. If
he's bent over as bad as Elmer, you can see why it's the bifocal he's
looking through now. Elmer kept telling me the floor was wavy and
moving and he just kept falling because of it. After we realized what
was going on, it make perfect sense then.
Hope Bob is again able to see the world around him.
Sally

Sylvia
I'm glad our timing was good. Hope it makes a world of difference for
her. Congratulations on the new grandbaby. New life does wonders for
old life. It always gives us hope.
Sally

Bill.
The proper name for that procedure is a (tracheostomy.) The resulting hole
in the neck is called a (tracheotomy),
In medical circles the word "Trach" refers just to the trachea. so if you
talk with a doctor about a "trach", he will assume you are speaking of the
trachea.
God Bless,
Jim Stark

Jean, Thank you for your incredibly nice note. Yes, it's been a month and I
cannot tell whether it seems like yesterday since I spoke with my mother or
20 years ago.
I related to Anne privately two stories about my mom that I was just told.
When my sister's friend went to visit my mom recently, my mom was being
assisted down the stairs by her aide. As she descended in her twisted state,
she sang to my sister's friend, "Here comes the bride."
And then just about a week before she died, she could no longer walk at all.
My father was carrying her up the stairs and she turned to him and said,
"Shall we dance?"
I know my mom and both instances were attempts to put the other person at
ease with her situation. And, perhaps, it was to put her at ease, too. I
also remember when she went to work after her head slumped totally into her
chest and she used a neck brace. She could barely move at this point. When
she walked in she just said, "Don't ask. I was in a ski accident."
I love my mom so much and I thank you all for allowing me to introduce you
to her. Debbie
Debbie White
dwhite@...

hi.
I tried benedryl a few times then I was told to please not do it again:)
It really screwed me up the following day after taking it.
As for the Sinemet, I eat very little protein during the moving part of
my day. However, I do make sure I drink 1-2 cans of Ensure,
gaterade,water, V-8 (tiny 6 oz can), rice, vitamin C, Oodles of
noodles---things like that. The protein is either eaten at the evening
time or very early AM.
The amounts of food is very small because I take sinemet at 7, 10,1,4,7
and it takes my food a long time to digest. Sometimes at 5 AM I eat 1/2
cup of chicken pureed with miracle whip or low fat mayo before my 7 AM
Sinemet, ect. I find also if I drink about 4 oz of orange juice with
the sinemet in the AM before I get out of bed, then I don't feel so
lightheaded, ect.
nancy

Barbara-
Thanks. I'll look into it.
John

Sally:
Still basking and still miserable! Even the endless election is wearing out
as a distraction...and I'm a political junkie.
I've got a secret plan, however. I'm heading south next month. Stay tuned.
John

Vera, when did I meet your mother-in-law? Well, let's just say it's because
my own mother takes the opposite approach! Didn't you hear that I'm going
to die next Tuesday? Sheesh! My mother was bitterly disappointed to hear
I'm doing fairly well. Sure I struggle to keep everything in balance. But
it's not the end of the world. Oh well, we all deal with adversity
differently.
Regards,
=bjf=
John B. Fisher

Thanks guys for the information about eyes. Mom just got new glasses in
June and has been complaining that she still can't see. Now I know what
the problem is. I will be seeing her today so I will pass on the info to
her. She is doing much better. We are going to be grandparents again in
June and so Mom is working on knitting a sweater for the new baby. Two
years ago she started it for our first grandchild but her hands gave out
on her. She has been doing therapy since her last hospital stay and is
once again able to knit. I am so happy for her. She seems to be having
more up days than down right now and so that is very encouraging for her
and Dad.
Pam had given me some addresses for two people in British Columbia. I
seem to have lost them somewhere in my computer problems. I am trying to
switch to a new internet server but I need to do some upgrading on the
computer. A friend gave me an old computer now that another teacher
friend took to school for the computer class to upgrade for me. It is a
service to me and them. In the meantime I have gone back to my old one
and I must have erased some stuff that I didn't mean to. Would it be
possible to get the addresses again?
We had a skiff of snow last night. It is so strange to look out this time
of year and still see bare ground. My son is very unhappy because he
wants to snowboard and there isn't enough snow on the hill close to home.
Sylvia

Marilyn:
I really do understand what you are saying, and want to thank you for
being there with your help .Please! don't feel like you hurt my
feeling, because you haven't in anyway. I know that you just want to
help me and wish that my mother in law would be of more help.
Your a good person to care so much.
{{{hugs}}}}
Vera

Bill:
Thank you for letting me know about the trach. I know what one is,
but the good old brain wasn't working to well last night when I
asked. REally wasn't thinking at all. My mind was really elsewhere,
had my dad call and tell me his business partner's grandson passied
away yesterday. He was only 27yrs old. He had a blood clod go to the
brain and he didn't make it to the hospital.
Vera

Gordon Sinclair has been dead for probably 15 or 20 years, or close to it. In
case anyone thought this was a recent article. :)
Hugs,
Pam

Debbie,
I can't help but remember that it has been one month today since your mother,
Joyce passed. As I think about the many nice things you shared with us about
your Mom I think the one that stands out in my mind is the party she had for
a child of someone in the hospital when your Mom was a patient. She still
managed to do for others even when she was having a difficult time. I am
glad that you are still out there encouraging others, just like your Mom.
Jean (Phoenix)

Vera,
That is why she does not believe the doctors - they are telling her to quit
smoking.
Take care, Bill and Charlotte
=====================================================

Vera,
The trach we are always talking about is where they cut a smal slit in the
throat (trach) and insert a tube so you can breath through the tube. That way
the patient can breath almost directly into the lungs and bypass all the
congestive areas of the mouth and throat. They can then also inflate the lungs
or release the air and help with breathing.
Hope this helps, Bill and Charlotte

I certainly understand the problem. I was only saying that for people to
really understand, they have to be there. Marilyn in TN

Marilyn:
It would be nice for Freds mother to see what it is like for Fred,
but she is a heavy smoker and I know that Fred wouldn't beable to
breath in her place and I know she couldn't live here for more then
an hour. That is about her limit that she stays here.
It would be nice for her to understand , but not at the cost of
hurting him.
But I know what you are saying and I would agree to it, if it weren't
for the smoking and knowning that she would try to cut him off the
meds.
Always
Vera

Thanks Sheila I needed that.
A cute way to look at it.
hugs
Vera

Jim:
Thank you, had no Idea what it was, Ms. Md I'm not. But still
learning , with the help of you here.
God bless
Vera

In my opinion no one really knows how this illness works unless there are
with it day and and day out. That is why I believe that family members
should be in the home for some time or have the patient in their home for
some time to have any simple understanding. I was a daughter-in-law and am
a mother-in-law. I would imagine that my daughters-in-lay might have a hard
time convincing me that my son was ill, if I were not there to see it.
It has been difficult for our sons and their families to understand the
problems that their dad is having even though there is a lot of interaction
within our family and much time together.
We sometimes wonder on this list how the medical profession can not be
knowledgeable. If they are less than knowledgeable, how can lay people
understand, when they may be with their loved one for a 1-3 hour period
once/twice a month(more or less)?
I agree that it would be a good idea for your husband's mother to visit in
her son's home or for him to visit in her home for several days with her
doing much of the work. I think it will take that for her to really
understand.
Respectfully,
Marilyn in TN

Marilyn:
He wouldn't last a week.
lol
Vera

Nancy:
you got it right. Fred is the oldest of 7 kids. His mother is
married and he has a step father, but his mother has always tried to
control her family, she still trys, but it isn't the best thing that
she can do for the kids. Mostly for Fred, when He can use the help
and not a fight about his meds.
Do you ever get out to fish anymore? Fred is suppose to go this
Friday again, but will have to see how he is doing for sure then. You
know how things change from day to day with this MSA.
hugs
Vera

Vera,
She is talking about the trachea or wind pipe. It is the big, cartilage
ringed tube that goes from the throat to the lungs.
God bless,
Jim S.

What is the trach that Judy is talking about? What does it do ?
If I don't ask, I won't know, right?
Vera

Judy:
I hope by now that Mark is doing better, and the doctors are doing
their best to get him up and home with you for christmas. My prayers
are with you .
God bless
Vera

this was written a number of years ago ... and is still true ...
thanks for reminding us
cheers
sheila

Mary:
I hope that Warren is doing better now. I know how this illness is
never the same day to day. Fred has a few really good days, and then
he'll have a week of bad ones. Today is one of his better ones.
Did you get a chance to call his doctor? Please let me know how he is
doing?
{{HUgs}}
Vera

Vera ..
you are doing a fine, wonderful job ....
denial can be deadly ... or just a river in Egypt ... ;-]
when you are caught in the gridlock of the situation .. it is almost
impossible to see the forest for the trees .. and besides the tree ain't
that good to look at ....
cheers
sheila

Sally, Bill, Charlotte, Carol & Rob: Thank you all for your advice regarding
bifocals and eye problems. Bob has quite a few eye problems. Still the
infection, dry eyes, macular degeneration and he has had the laser eye
surgery for glaucoma among other things. Next week we will arrange to get
new glasses without the bifocals. I can see because his head is bent so
forward that he really must be having a hard time. He does not read now.
There was a time that he read everything in sight about submarines, mysteries
or war stories - then it was on to books on tape. We had a million of them
and our library here had tons and I think he read all that fit his interests.
He just watches a little TV now or Video Tapes & a few movies that he likes.
The family sends along ones they think he will be interested in but he
watches them in small segments. He has his little CD Player and I put on his
"Four Freshmen" CD's but I think he snoozes through most of them. I think
your information regarding bifocals is a winner and I really appreciate it.
I can't think why I never thought of it. Hopefully it will help with getting
him into a chair. He sees it but he can't seem to perceive or focus how to
get turned about and down into it. The Dr. wants me to rub his closed
eyelids in a circular motion and add liquid tears. Bob is still on the meds
and I gave the Dr. some papers with a description of SDS. The paper I gave
him describes the loss of pigment in the iris in the 1st paragraph and it
also mentions difficulties with focusing and visual symptons. The paper is
by Dr. Joseph Jankovic, Director of the Parkinson's Disease and Movement
Disorder Clinic of Baylor College of Medicine. With most of the information
I have I'm sure I got it through info I received from this group. Thank you
all for your help.
LOVE FROM PAT
IN FRAMINGHAM MA

Sally:
I'll follow your advice and just hang in there and do what I have
been doing for Fred. I have his best in mind and want to keep him as
well as can be, for as long as I can.
{{hugs}}
Vera

Barb:
I really don't think Fred would stay with his mother for a week,
that's why we live down here instead of Apple Valley. She likes to
control, and he said he doesn't like that, so he wants to live at
least an hour away from her.
Two of the kids don't even talk to her anymore, and I'm sorry that it
has to be that way. It's a shame.
Always
vera

Mary:
Thanks for being there when I need it, You have so much to do
yourself with Warren, How is he doing? I've wanted to write you
before this, but time doesn't seem to give me a chance to ask when I
want to. But then I know you understand that. I've been mostly
watching all the grandkids, My son got their first house , so I'm
baby sitting while they move their things, Got the five grandkids
asleep last night by rubbing faces, they love grandma to do that and
tell them a story, and of course grandma is a softly I do it
everytime.Oh well that's what grandma's are for, right?
{{hugs}}}
Vera

Ann:
I wasn't very nice when I was upset about my mother in law. JUst that
It's hard when they don't know what is going on. Fred comes from a
large family , he is the oldest . I just feel sometimes they could
help or at least understand that the doctor knows what he is doing. I
would take Fred to just any hole in the doctor. I feel he is treating
Fred as best that he can .
I'll put the noodle away till next time.
hugs
Vera

Pam,
He mentions infection! The man needs to get on the correct antibiotic and get
the infection cleared up ASAP. It is probably caused by dehydration due to not
getting enough liquid and the man needs to get into a hospital and rehydrated as
well. As you know drinking liquids is a problem for MSA patients. The longer
he has an infection the more chance of it getting into his blood.
Push him to get the man to an ER, ASAP.
Take care, Bill and Charlotte

Vera:
No changes and nothing new to try.
Frustrating... and a downer.
John

Well JVM
Send me some of those sleeping pills .......... I still can't sleep!!!
Are you still basking in the shadow of the nation's capital? Any
thoughts .................. maybe we will need to move it to FL soon.
My brother has sent me so many FL voter jokes that I can hardly read
them any more.
It sounds like you are still having trouble, wish I knew something else
that would help, my brain runneth dry!!!! =:
Sally in KS

Barbara:
Comtan is an agonist, no?
My neuro says I won't tolerate them because of my OH.
Thanks for your thoughts nonetheless.
John Moller

Anyone out there - Is there such a thing on the market? Any that look
"stylish?" Bob's combination of a new medication, diminished exercise and
non-diminished appetite (thank goodness!) have caused a weight gain! We
couldn't believe when he tried on some seldom-worn slacks the other day - he
could NOT get them buttoned!! I moved the button, but they still look
uncomfortable. Plus, as is common, I'm sure, it is not as easy to fasten and
unfasten buttons with this condition, and it takes a longer time which can cause
havoc when having to go to the restroom... My daughter made the comment, "I'm
going to sew velcro on all of Dad's pants"...which made me think perhaps there
were slacks with velcro fasteners. If anyone knows, you guys are the ones who
would! Thanks for any information you may have.
Elaine Grimmesey
Definitely a possible "use it or lose it" issue. But when I get a chest
cold, I start to have shortness of breath. When my doctor listens, he hears
lots of wheezing. I don't have asthma. But my body sure acts like that.
Of course, as you know, shortness of breath can also indicate other serious
problems. When in doubt, talk with a doctor about symptoms like this. It's
way to easy to blame MSA and miss another serious and managable disorder.
Regards,
=jbf=
John B. Fisher
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Mary
Elmer went through that this last summer. Wouldn't watch TV even
because he couldn't see. When reclining in his chair, he was still
looking through the bifocal. I still can't believe it took us so long
to figure out.
I think the eyes do go through an unstable time though. Elmer's seem to
have settled down quite a bit now. At least he can read and watch TV
now. Many days he doesn't put his glasses on. Says he sees better
without them.
Much Love
Sally

Peg & Jim:
I've only tried the 50/200 CR at night, with no apparent benfit.
I'll talk to my neuro about daytime use.
Thanks.
John Moller

John :
I think you are right about my mother in law . When did you meet her?
lol . I think you know her better then me, or you just read people
good. It's a shame that she has to denial it , instead of facing it
and trying to help.
still hanging in there
Vera

Vera
Hang in there. It sounds like she is much like my Mother-in-law. She
doesn't understand completely what the disease is and what it does much
less understand how the meds work. I finally gave up arguing with her
and just ignore what she says. It is the only way I can keep my sanity.
You just waste your breath talking because they only hear what they want
to hear. Accept it and go on, she isn't going to change. Just remember
that you have no control over what someone else thinks and does.
That might help a little
Sally

Bill:
I'm taking 4 1/2 25/100s a day. That's 112 Carbidopa amd 450 Levadopa a day,
right? That doesn't seem like much in terms of the numbers you quoted.
I've tried 50/200 CR at night but it didn't seem to do anything for me.
I've never paid much attention to the protein factor. My neuro pooh-poohed
it when I asked him aboutt it some months ago. Maybe I should reconsider.
What rule of thumb do you follow for injesting protein?
John

Does anyone have more input for Ben? He and I have already discussed the
possibility of infection.
Regards,
Pam

Carol:
Maybe I can tell her the way that you explained it. It's worth a try
anyway. Anything that will help , is more then welcome.
Hugs
Vera

David:
Thanks for your reply.
My neuro says I won't tolerate agonists becuse of orthostatic hypotension
which is a big problem for me.
So is sleep. i take sleeping pills. If I had to wake up at 3 a.m. to take
meds, i think in my case "the cure might be worse than the disease!"
John Moller

John
Most likely narrowing of the airways plus extra phlegm which is then not
carried up and out of the body due to the lack of muscular wave of the
hairs carrying the junk from the lungs and bronchial tubes. So in fact,
asthma which is not truly asthma and doesn't respond to asthma meds. :<(
Sally

Sally:
I'll be good and hang in there, and I won't use the noodle, but at
times I wish my mother in law would use her. I think John said it
best when he said that she is in denial, but after four years you
think that she would see it now. It's just hard when all his family
only check on him ever so often and then have all the answers to what
I should do. They don't even talk to his doctor's or see him the way
I do.Maybe if they were here to take care of him the way I do, then
maybe they would understand. Wouldn't that be a blessing. God know's
it would help.
Thank's for the shoulder to cry on.
HUgs Vera

John
The first time Elmer's iris vanished it gave us all quite a scare. We
weren't sure what had happened. First everyone assumed it was the meds.
I did some digging and sure enough just another of those freaky things
we get to experience with MSA.
Sally

Hi Bill:
You don't know how many times I have tried to explain to Freds Mom
about his illness, but it doesn't seem to get into her head what I am
saying. I have told her time and time again, that he had all these
systoms a year before he was even on the meds, so how can it be the
meds that are doing it, but she still doesn't understand and always
comes back with the same thing again, that he needs to go off the
meds and then she will almost talk him into it (she done it before)
Only this time I had him talk to our Pastor Wife Kathy , she is a MD
and she tolded him what you said, that if he goes off of them that
he'll get stiff and he doesn't want to do that, and told him that
after awhile he will fine that the doctor will put him more of the
meds. I think she explained it to where he understand why he needs to
take it.
Thank You for your help
Vera

Hey all,
Anyone interested in glossy photo paper for inkjet cameras should check out this
site:
http://www.atyouroffice.com/promos/holiday/holiday.asp?t=xmas_cat_greetings_rev_\
1
If you can't get there directly try going to
http://www.atyouroffice.com/promos/holiday/
first and click on the icon for photo paper. They have some paper (off brand)
at 50 sheets for $20 glossy both sides for inkjet printers. PS if you spend
over $50, they give you a free Kodak ($9.59) camera. (see offer at the 2nd
promos site) They also have a nice selection of paper for Christmas and red
envelopes. Prices on ink cartriges are only fair.
I tried it as finding those papers (for Christmas) is sometimes difficult, I am
also trying the glossy paper.
Take care, Bill and Charlotte

Has anyone out there also with osteo-arthritis had any luck using
glucosomine? If so, has it helped relieve pain and joint stiffness?
BVPond (VA)

Barbara (VA)

This is a popular anecdotal aid for arthritis. Doctors are reluctant to give outn things that may have contaminates of other chemicals which may do harm to you, unless there is a definite advantage to you. I do have a friend whose wife had a stroke at 45 and started taking glucosmine religiously about five years ago for arthritis - she died of a stroke about 6 months ago. There is a lot we do not know about things like this. Whatever you do - tell your doctor before you start on them.

Also read:

http://vm.cfsan.fda.gov/~dms/ds-ill.html

For info on supplements NOT to be taken. PS some are advertised in "natural" cough suppressants.

Take care, Bill and Charlotte

Nancy,
Sorry I wasn't able to get back to you on this. Digital cameras are past
version 1 and well into version 2. To get decent pictures, you night a
higher number of pixels. And the more pixels, the more dollars. A LOT
more.
Interestingly, there are developments underway with normal film photography.
They expect to RADICALLY change the ability of our cameras to capture color,
light, and detail. At this point in time, I honestly think that a 35mm
(point and shoot with some control) is a better bet.
Besides a Photo CD (or photo disk) is a great alternative.
Regards,
=jbf=
John B. Fisher

Barbara has told you of probably the best in this area of the U.S.
I'd asked her about this group before we took my dad there. They
normally see patients at Aston (clinic) and if one stays overnight,
he/she goes to Zale Lipshy (both of these and several hospitals feed
into Southwestern (UTSW). The hospitals are not out in North Dallas
and not the easiest to get to, although they all connect. Barbara was
willing to come some distance for Ralph's visits there, and we
brought my dad here from near Amarillo (my family chartered a plane).
I heard of one guy recently who moved his parents here from out of
state just so they could be near these doctors. These guys are
research and teaching doctors so do not see patients every day. It is
hard to get an appointment whenever one wants it.
Drs. Dewey and Padraig O'Suilleabhainthem are both professors at
University of Texas Southwestern Medical School (UTSW). Dr. Dewey
created the Clinical Center for Movement Disorders after he received
his M.D. from Baylor College of Medicine in Houston and completed his
residency at Mayo Clinic. He completed his movement disorders
fellowship at Mayo. Dr. Padraig O'Suilleabhain received his M.D.
from Dublin University School of Medicine in Dublin, Ireland and
pursued neurology residency and movement disorders fellowship at
Mayo.
Dr. Dewey has a strong interest in Parkinson's and Dr. O'Suilleabhain
has a special interest in studying tremeor and has developed
computerized methods of tremor analysis. They see patients who
suffer from a variety of move movement disorders by consultation.
Donna Waggoner

Dad seems to be getting out of breath lately when going even very short
distances. His lung capacity seems to have diminished quite a bit in a short
amount of time - or at least it seems that way.
Anyone have experience with this? Does this fall into the same "use it or lose
it" category? Mom walks with him every night, however the walks have been
getting shorter.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633

Nancy,
My first real computer was a Zenith (Heathkit) 110 (128 k not meg of RAM) no
hard drive and
two 5.25 inch floppy drives at an incredible speed of 5 mhz But at work we had
8 inch
floppys, so I had to transfer data before I brought it home. Your whole program
and
operating system had to fit on one 360 k disk. Now I have programs that take
up 132 meg
of disk space.
PS that is NOT a Mac from 1984 - it is an Apple. The Macs did not come out
until the late
80's. In fact you must have one of the first Apples. I bought my Zenith in
July 1983 and
it had only been out a month or so. Twenty letters would fill a diskette.

"OLD" IS WHEN.....
Your sweetie says, "Let's go upstairs and make love," and you answer,
"Honey, I can't do both!"
Your friends compliment you on your new alligator shoes and you're barefoot.
A sexy babe catches your fancy and your pacemaker opens the garage door.
You don't care where your spouse goes, just as long as you don't have to go
along.
You are cautioned to slow down by the doctor instead of by the police.
"Getting a little action" means, "I don't need to take any fiber today."
"Getting lucky" means you find your car in the parking lot.
You start saying things like, "Gee, this sebaceous cyst is killing me!"
Someone mistakes you for a sun-dried tomato while you're shopping at the
grocery store.
An "all nighter" means not getting up to pee!

Pat,
We solved the bifocal problem by two pairs of glasses, one for reading and one
for TV :o)
Seems to work okay. And we caught a sale at Lenscrafters with 2nd pair 1/2
price.
Take care, Bill and Charlotte

I went to this site and clicked as many times as I could.........hope you
will, too!!!
Here is an easy way to make a difference this holiday season. Campbell's is
donating a can of soup to the needy for every person that goes to their site
and votes for their favorite NFL team (up to 5 million cans).
http://www.chunky.com/click_cans.cfm
Go to the site and it is right there, very easy to do. Please forward this
message to everyone in your address book too.
Thanks.

loll wow! I thought we were the only ones with 8 inch floppies! We have
an 386 in the office here. It moves slower than me when I am not 'On':)
My son has a mac from 1984 but I need a mouse for it which I can not
find:( He had a AppleIIe, but a couple years ago we sprung for a
'modern' computer.
nancy

Hi Jean and Chrissie
Are you in FL yet???
My weekend is over and now it's time to go back to work!
Did a little Christmas shopping today and now it's back to the world of
hospitals.
Hope all is well
Hugs and smiles from KS
Sally

Pat
Please tell your Dr that MSA patients don't do well with bifocals. It
took us much longer to figure it out than it should have. It felt
terrible about Elmer not being able to see. He kept saying everything
was blurry. Well, duh!!!!!!!!! He couldn't move his head and his neck
is stiff. He is bent and looks down all the time so what he was looking
through was always the bifocal part of the lens.
Once we put just the distance lens in he could again watch his ball
games on TV. He seldom reads anyway but if Bob can still read I would
get 2 pair of glasses for him. One to read with and one to see TV with.
MSA does cause problems with the eyes. Part of it is due to the muscles
not working any more so the lens does not focus as it should. The other
is due to the message relay in the brain. It all must go to the
Occipital or back portion of the brain (the lump on the back of the
head). Messages either are not getting through or they somehow aren't
clear.
Elmer has had problems with his eyes and the iris in particular for
about 2 years. There are times he can not see much at all and then
other times when he sees fairly well. His eyes used to get really red
and dry but it hasn't been a problem this summer. I'm sure it will be
again as the air gets dryer this winter.
Hope the appointment goes well. Make sure your Dr knows that Bob has a
degenerative disease that affects the autonomic system and the areas in
the brain. Once he knows that, he should be able to understand a little
better what is going on. I took the general information into Elmer's
eye Dr and let him sort through it. He was upset with himself about not
catching the fact that Elmer should not have been wearing the bifocal.
Much Love from KS
Sally

Think about it! Take a few minutes and read these. Think about them one

Subject: please read
<< << If a guy by the name of SlaveMaster contacts you do not answer. He
has killed 56 women that he has talked to on the internet. PLEASE SEND
OUT
TO
ALL THE WOMEN ON YOUR BUDDY LIST . ALSO ASK THEM TO PASS THIS ON. He has

Vera,
Bless you, as if you don't have enough trouble then come along" Mrs. know
it all". You need a double wet noodle.
Ann from Soddy,TN

Interesting research. Protein plaques are also involved in MSA.
http://www.sciam.com/2000/1200issue/1200Stgeorge.html

I've only ever seen two references to this. It was observed in SDS patients
by Shy and Drager in their initial report of the disorder in 1960. I've not
seen it mentioned in more recent descriptions of the disorder.
Regards,
Pam
http://www.parkinsons-information-exchange-network-online.com/archive/091.ht
ml
Shy-Drager Syndrome
Clinical Aspects
ln their initial report. Shy and Drager {103} described two men who
presented with symptoms of orthostatic syncope, impotence, and bladder
dysfunction. These men later developed parkinsonian leatures, including gait
disturbance, mild tremor, dysarthria. constipation, and bowel and bladder
incontinence. The diagnosis of SDS should be strongly considered when a
parkinsonian patient develops symptoms of orthostatic lightheadedness
incontinence, sexual impotence, and other autonomic symptoms. This disease
appears to be more common in men than in women with symptoms first beginning
in the 6th decade; death usualty occurs 7 to 8 years after the initial
symptoms and approximately 4 years after onset of neurolugic impairment.{78}
Patients with SDS usually die from aspiration, sleep apnea, or cardiac
arrhythmia.
In addition to bradykinesia, slow and shuffling gait, and postural
instabil-
ity, patients with SDS often exhibit cerebellar ataxia, amyotrophy,
corticospinal tract signs, and iris atrophy.{103} Emotional lability,
respiratory disturbance including severe obstructive sleep apnea, and vocal
cord paralysis with stridor are often found in more advanced stages of the
disease.{81} Dystonia is rare in patients with SDS.{98}
http://www.wwa.com/~claudec/shydrager/qa1.htm
What is Shy-Drager Syndrome?
In 1960 Dr. Milton Shy from National Institutes of Health and Dr Glenn
Drager from the Baylor College of Medicine, Houston, described in the
"Archives of Neurology" two patients who shared common clinical symptoms.
Both were men who became sexually impotent and developed bladder problems at
the ages of 39 and 49 respectively. The urinary problems became worse, and
within a few months both men complained of dizziness on arising from a
sitting or lying position, causing momentary "blackouts." They later
developed constipation, urinary and rectal incontinence, slowness of
movement, unsteady gait, slurring of speech, mild tremor and other
Parkinsonian symptoms. On examination they had very low blood pressure when
standing, and in addition to some Parkinsonian findings they also had
wasting of muscles in hands and feet, dry skin due to loss of sweating, and
loss of pigment in the iris of the eyes. Additional tests revealed an
abnormal function of the autonomic nervous system. The second patient
subsequently died and the autopsy examination provided evidence that he had
a distinct and unique disease. Shy and Drager recognized that there was a
link between low blood pressure during erect posture (orthostatic
hypotension) and disturbance in the central autonomic nervous system. To
acknowledge their contribution the disorder is now known as "Shy-Drager
syndrome" (SDS).

Mary
Hope you find the problem. Something doesn't sound quite right. Hang
in there.
Sally

Steve
It is another symptom. The eyes are controlled by muscles and the iris
can be affected as well as tracking and blurring of 1 or both eyes. As
Bill said, it seems to affect 1 eye more than the other.
Something we learned this last summer was that MSA patients are not to
wear bifocals. The eyes just don't adjust well and the bifocal is
normally in the bottom and we found that was the only part of the lens
Elmer was looking through so everything was blurry. He now just uses a
regular distance lens in his glasses.
He has had the iris almost completely disappear in both eyes and the
next day they were back. It is just another of the strange things that
happen with this disease.
Sally in KS

Judy,

Hang in there! Sorry to hear Mark is having such a rough time. Maria had some of the same problems last year at this time and is now down in Florida basking in the sun with Dan. He too has the trach and PEG. Charlotte still only has the PEG, but is getting more food through the tube now.

At least his lungs are clear now, that is scarry always.

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Have a hug from us, Bill and Charlotte

My husband has worn a knee=high jobe for about 5 years, on one leg only,
because of phlebitis coming after an opeeratiion. The last time we ordered
one, about 2 years ago, it was about $35.00 for one. In all the years we
have been using a jobe, we have never gotten a run--it does get slack and
sprung after a while, of course. We ordered the knee high from Klemmt's
Orthopedic Supplies, Front Street, Vestal, New York, our former residence.

information you've supplied that I am not quite ready for a digital camera
just yet. My computer is a few years old and don't know how long it will
be to get a new one. They change so rapidly. One day you have the
requirements and the next day you're outdated.
I make a big step like that. Plus, the cost will come down tremendously
the longer they're out.

Hello All,
Mark's latest update is not good news. He is still in ICU but his lungs have
cleared up. His temp is still around 99 but was up to 104 on Friday. Friday
evening he had another episode where his lungs started to fill with fluid
again and this time they had to put him back on the ventilator. He has been
sedated since Friday but breathing well with the ventilator.
The swallowing study went exactly as everyone thought it would, not very
good. He had a PEG tube inserted Friday also. It seems that Mark is having
laryngo spasms that totally block his airway so he stops breathing and his
lungs start filling with the fluid.
He is scheduled for a trach to be inserted tomorrow morning. He will be
connected to the ventilator with the trach then weaned off a little at a time
over the next 7 to 10 days. The hope is that he will be able to breath on
his own with the trach and may only need to be connected to the ventilator
while sleeping. It's just a wait and see thing but we are optimistic. He
was able to breath on his own all week even though he had the aspiration
pneumonia. The ventilator and sedation are to keep him from having anymore
spasms until the trach can be inserted.
Of course, eating will be out of the question for a period of time. He may
be able to eat pureed foods with the trach but not for a few weeks.
Mark is resting very comfortably and I haven't seen him breath so well in
years. He can squeeze our hands when we ask him a question and did agree to
the trach.
My family will be coming down for Christmas this year and I'm really looking
forward to them coming. My Mother and Brother will be staying for 2-3 weeks
and I sure can use the help.
Take Care, I'll let you know how this next procedure goes!!
Judy

Mary,
Sounds like an infection, be sure to get him in to see a doctor.
Take care, Bill and Charlotte

Hi all,
Just a couple of weeks ago I wrote that things were going pretty good for
Warren and now in the last 3-4 days his b/p has started to drop again while
still taking same meds. He did have stomach flu right after Thanksgiving
but seemed to get over it easily. I will be checking with Dr. tomorrow as
he's also become very weak. He had been walking pretty well with walker up
to this time.
I've also noted that he's not understanding or able to, and not remembering
how things that he always uses work.
Things sure change fast on this disease.
Thanks for listening, Mary

will be there, with cookies. Who else is coming? A map or directions
from Louisville would be helpful since my husband and I are both
directionally challenged.

Hi. I am Barbara Selleck
My husband was cared for by Dr Richard Dewey at the neurological
department of Southwestern Medical School in Dallas. You have to be
referred by your personal physician.
Barb

Hi, My name is Ellena and I am new to this group. I have received
several emails lately from some very great people. It is nice to
know that other people care and want to help each other.
I would like to know if anyone has ever used Dr. Levine or Dr. Wolfe
in the Dallas area. These doctors names were the only ones listed
under the Physician Specialty Listing.
My dad was dignosed approx. 2 years ago by a Dr. in Shreveport. The
only thing is he has never had a Shy Drager patient and really
doesn't know or seems to not have time to learn and help my dad. So
we really need to find a doctor. There was a lady that sent me the
name of her husbands Dr. in Dallas and I think my kids must have
deleted that file because I can not locate it. So if anyone has any
input into Dr.'s around the Ark/La/Tex area please let me know.
Thank You!

Vera,
Bill has a great idea. How about explaining to her that his body no
longer makes a chemical it needs AND explaining that it's like
someone who is diabetic. If the body no longer makes insulin, you
have to replace it by injection or pills, or your blood sugar goes
too high and you can die. If the body no longer makes dopamine, it
must be replaced or the nerves can't sent the signals to the muscles
and the body won't work right.
She sounds like one stubborn woman! Good luck.
Carol & Rob

Mary Ann,
The therapist will have to work with her on that also. There is no easy
solution. The more she does not walk right, the harder it is to get the correct
movement back. That is why we always say here "Use it or lose it".
My wife also walks (what she can) with bended knees. She had symptoms as early
as 1987-88, diagnosed as PD in 1990 and MSA in 1995.
Take care, Bill and Charlotte
PS on the Jobst hosiery - doesn't Medicare pay for them?

Mary Ann
I found support hosiery in different support ratings at:
http://www.medicalsuppliesplus.com/cgi-bin/mdplus/scan/ml=10/di=category/df=yes/\
dl=Health%20Support%20Hosiery?mVyiJvbr;;68
if that does not work try:
http://www.medicalsuppliesplus.com/cgi-bin/mdplus/search?mVyiJvbr;;56
and click on Support hosiery
Here is the actual Jobst site but it has no prices:
http://www.supportstoc