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http://www.whowhere.lycos.com/Govt/main.html

The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Dear Mary
Thanks so much, it is good to be back. Cant wait for you to tell me of your
Christmas in Australia. Must have seemed strange to you for it to be hot!
Love from Anne

Hi! My name is Danielle. My Dad was diagnosed with MSA about 6 months ago.
I am responding to your question concerning contacting your congressperson or
senator. I located my congress woman by plugging her name into a search
engine. Her site came up and there was information as to how to contact her
in writting or via e-mail. I'm sure you can do the same thing with you
senators. I hope this helps.
Take care.

Hi Jennifer,
Thank you so much for explaining the facial grimacing as being muscle spasms.
My husband, Mark, had been grimacing his poor face so much that everyone at
the hospital was positive he was in pain even though he said he wasn't. The
grimacing is a new thing for Mark and has only shown up in the last 6 weeks.
I call it his "ugly face"!!
Thanks again, take care,
Judy Whittaker

Hi Kathy,
I'm Judy Whittaker, wife and caregiver for my husband, Mark, who has had a
trach for one whole week now. He also got a PEG tube during the same
hospital visit. He finally got home on Tuesday after 17 days in the hospital
with aspiration pneumonia. The day before he was released he had a chemical
stress test for his heart and a moderate blockage was found for which he is
being treated with meds.
The trach really scared me at first but I'm pretty used to it now. I never
realized that there was so much involved in the management of the trach.
Trach care kits, suction machines, suction kits, etc. We've now got so much
"STUFF" for Mark's Peg and trach that I had to clean out closets and drawers
to find spots for everything.
Mark has a vent that we hook him up to most nights but he doesn't need it
during the day. I have been totally overwhelmed since Tuesday when I brought
him home but today was finally a good day. I even managed to take Mark a
ride this afternoon portable suction machine and all! I finally found
someone to come in and help for five hours a day five days a week (for which
insurance won't cover), but, I'd pay anything right now for some help.
Take Care,
Judy Whittaker

Pam
Please add me to the group. Mary Ann Pedersen at mrspedersen@...
from Minnesota. My Mother Mable Neubauer (79) has Shy-Drager. Thanks

Hi Meg
You are about 80 miles N of me. Carol Lee is N of you, somewhere
between Lincoln and Omaha, I think. We went right through Falls City
when we took our grandson to Omaha to the zoo this summer.
We took Elmer to KU Med for his 2nd opinion diagnosis. The Dr who
determined he had MSA was our Internal Medicine Dr who is our family
physician. He was just sitting up his 1st practice and considered a
real whiz. It took him a matter of months and a few tests and consults
with other Dr to officially determine Elmer had Shy-Drager. KU Med
checked the paperwork and scans, checked him over and sent him home
saying stick with your Dr, he's doing everything we know how to do.
He has changed local Dr 2 times since then, once back to his original
old time Dr, then back to our Dr, now to another local Internal
Specialist. He has been in the nursing home for 1 year and has gone
down hill but is doing as well as can be expected.
Elmer is now 80 and I think has probably had the disease for at least 15
years if not closer to 20. He stayed active and did very well until
about 2 years ago at which time he began having more and more problems
and last year we finally had to give in and place him in a nursing home.
My mother-in-law had both hips replaced this year and she had just worn
herself out.
So, to answer your question. There are very few Dr in this area. I
would be inclined to think that you would find someone around the Omaha
area. As far as I know there are no real experts in KC. The ones Elmer
met with knew what it was but not much more than that. He also saw
several neurologists at Mennigers and did some of his testing there.
Most of them were convinced he had PD but none could explain the OH
problems. Most thought it was just a fluke and had never heard of
Shy-Drager at that time.
Carol Lee may be able to help you find someone in the area. I know
Omaha has a big medical center and Lincoln does too. We were able to
maintain Elmer for a long time with me doing the research and passing
along everything I found to his Dr. He was able to stay current and up
to date and contact other Dr for information. That seemed to work the
best for us.
Elmer is still able to eat as long as it is cut up so he can chew it.
He has no real problem with swallowing, his voice is decreasing in
volume some but is still very strong. He has bowel and bladder
problems, he is very bent over, his neck is bent forward and stiff and
painful, he is not able to walk anymore, muscles are very weak, eyes are
slowly getting worse and things looks wavy and faded to him. His
balance gets worse by the day, he says it's like walking on board a
rocking ship. He has fallen so many times that I can't believe he
hasn't broken a hip. His BP just hits rock bottom the minute he tries
to stand up.
Maybe between Carol and I we can find you a Dr but normally the best
thing we found was to stick to your primary care Dr and just educate him
to treat your symptoms and learn to watch for the things that can create
problems.
Hope that is of some help. Write to me anytime
Sally

Hello Everyone,

I would like to start writing to my congressman, senator, and the president but I have no Idea where one might find a list of their e-mail addresses.

Does anyone know of a source for this information?

I read a phrase from one of you a while back that has been running around in my head. It stated:"Remember, the arch was built by amateurs, and the Titanic was built by experts"

I think if enough amateurs (us) start working as MSA advocates, we can get this stem cell arch built.

God Bless,

Jim Stark

Join the club, I even have Dr. and nurses say what??
I always have a print out of the disease with me.
Ann from Soddy,TN

Dear Carol & Marilyn,
Thank you for your information. This time I printed it up so I would
keep it.
Again Thanks.
Ann from Soddy, TN

Hi to all of you. I want to share a happy event. Last Sunday was the
first meeting of our support group. We had nine people present
counting patients and caregivers and family member. It was better
than I imagined it could be. Every one was so willing to help in any
way they could and took on a task. It was wonderful! Never did I
think it would be so nice. Thanks to those who attended for being so
helpful. I feel we were family meeting again.For any of you who are
thinking of starting or attending a support group please do. Knowing
someone who understands the things that you are dealing with day to
day makes the load lighter. We visited and shared and planned what we
wanted to do and to get from the group. Pam gave me a site to go to
and I printed off a booklet on how to get a support group going. So
simple to follow and easy to do. We hope to gain in numbers by making
the public aware of this disease and educating so others will not
have to go through the years of trial and error to be diagnosed. It
was interesting to hear the stories of what each had been told they
had prior to the final diagnosis. Sorry to say some were told they
were depressed and needed mental help. When you know how you feel
inside but on the outside look fine and all the test are negative you
begin to think it is in your head. Thank goodness we had someone who
beleived us and looked deeper. I was so relieved when they told me I
had SDS it was like a weight lifted off my shoulders. The picture was
given to me straight by the movement disorder/autoimmune dysfunction
doctor. I am moving through the disease looking for the reasons why!
I have found more love comes into your heart and each day I see a
creation to admire. As for death coming early (if 59 is early) I have
had two wonderful dreams that make me know the other side is
beautiful and happy. I also know that others have had a lot more to
deal with than what I am. As a past nurse I have been priviledged to
share in lives that have been changed in an instant. If those people
can smile and have a sense of humor even if they can't take one
breath on their own or hug their children or move any thing but their
eyes I can try to do some good and accept my cross. Wow!!!!! Boy did
I get going! Just want all of you to know you are not by yourself. A
support group is so helpful to the patient,the caregiver,and the mate
and friends. We all have a common tie and a common wish to find
answers to this disease.The best way I know to do this is to make it
known to people who in turn ask questiions of their doctors,who in
turn will ask other doctors bringing an interest to MSA/SDS. We need
money for research and it is the puplic demand that gets the job
done. Thanks for letting me share with you and all the emails posted.
You are all great and add to my knowledge. Harriett

This directory is intended to aid in forming local MSA/Shy-Drager support
groups
and to generally keep in touch should people unsubscribe from the eGroups
mailing list. If you are looking to make contact with people in your state
or neighbouring states, you should feel free to email people on the below
list. All have given their permission to have these details posted. If you
are not included below, please send me your name, email address, state and
country along with permission to publish it in next month's member
directory.
I realize the email addresses don't show up below for those viewing
messages from the web so you may go to this link to see them:
http://www.egroups.com/files/shydrager/US+MSA+Support+Groups/Member+List+-+D
ecember+15%2C+2000
Regards,
Pam
pbower@...
AUSTRALIA NSW George Ford grford@...
AUSTRALIA QLD Anne Pledger apledger@...
AUSTRALIA VIC Eoin Bray EoinB@..., eoinB@...
AUSTRALIA VIC Kerri Francisco ciscokid@...
AUSTRALIA VIC Julien Harrison-Rogers JulienH@...
AUSTRALIA VIC Brian Lowdon brisar@...
AUSTRALIA VIC Mark Silver markjulia@...
AUSTRALIA WA Muriel Durham mu@...
AUSTRALIA WA Michael Ong mong@...
BOLIVIA Kathleen Taja ktaja@...
CANADA AB Heather Kovitch sinda@...
CANADA AB Ron McDougall mcdougal@...
CANADA AB Colleen Turner colleendianne50@...
CANADA BC Martha Armour marmour@...
CANADA BC Wendy Dalton WENDY_DALTON@...
CANADA BC Sylvia Ventin tventin@...
CANADA NS Pam Bower pbower@...
CANADA NS Patricia Dodsworth pjd@..., patricia.dodsworth@...
CANADA NS Donna MacAdams parker.macadams@...
CANADA NS Karen Reed bigmama@...
CANADA NS David Richard DRichardVP@...
CANADA ON Janette Brenzil brenlyn@...
CANADA ON Beverly Britnell chanlan@...
CANADA ON Emily Dam damfam@...
CANADA ON Maria Fuecks maria_warnerf@...
CANADA ON Edie & Gerry Hashiguchi hash@...
CANADA ON Jill Jensen gjensen4@...
CANADA ON Norm Kelly datlkell@...
CANADA ON Matt Klompstra matt@...
CANADA ON Mike McEwen mmcewen@...
CANADA ON Marie McNeely bulch@...
CANADA ON Dwight Moore dwightmoore@..., dwightmoore01@...
CANADA ON Linda Riding l.riding@...
CANADA ON George Ross geal@...
CANADA ON Veijot Andrew Toppila veijot@...
CANADA SK Rosalee Schmidt bob.rosalee@...
CANADA Suzan Yeates BladeQueen@...
CHINA Guangdong Henry Xu honglixu@...
FRANCE Jack Monet Jack1Rubye@...
GERMANY NRW Tobias Malbrecht Tobias.Malbrecht@...
GERMANY Anke Mueller amueller@...
ISRAEL Samaria Gil Lieberman gil_l@...
ITALY Arezzo Paolo Orlando orlandop@...
ITALY Mauro Miglio MMiglio@...
ITALY Denise Neumann deniska71@...
ITALY Gianluca Noseda ginoseda@...
LEBANON Sabine u-r-impossible@...
MEXICO Jails Bud Prather budnbetty@...
NETHERLANDS Noord-Holland Pieter Assink h.passink@...
NETHERLANDS Zuid-Holland Peter De Vries P.A.de.Vries@...,
pavries@...
NEW ZEALAND Karen Ellmers Karen_Ellmers@...
SOUTH AFRICA KwaZulu-Natal Michelle Murphy murphy@...
SWEDEN Nils Ostby nostby@...
SWITZERLAND Sybil Brooks 100534.1303@...
SWITZERLAND Marie-Hélène Hensch hewol@...
THAILAND Helen Chan hhchan@...
UK England Derek Balson derekbalson@...
UK England Dave Burridge Dave.Burridge@...
UK England Phil Cuckson pcuckson@...
UK England Jill Lucas JILL@...
UK England Pete Shorter pete-shorter@...
UK England Eva Stephenson munchie_cat@...
UK Simon Coles simon@...
UK Lorena Colledge lorena.colledge@...
USA AL Linda Cornelius linda.cornelius@...
USA AL Stephanie Harris Gha1047922@...
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USA AL John Legge Alconjohn@...
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USA AL Chris Summers Cws75340@...
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USA CA Sophia Dohm erd5@...
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USA CA Jeryldine Elliott jmelliott@..., jelliott@...
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USA CA Suzanne Grimmesey-Kirk suzkirk@...
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USA CA C. Koman fit-cat@...
USA CA Sharyl Ledin ledin@...
USA CA Julius Margolis jmargoli@...
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USA CA Elaine Plamondon emplam@...
USA CA Linda Rose DHRLMR@...
USA CA Jan Seerveld JAN.SEERVELD@...
USA CA Mark Shaw markcshaw@...
USA CA Barbara Smith KMCRAE@...
USA CA Patty Smith trvllvr@...
USA CA Margie Stalzer MStalzer@...
USA CA Mary Strong mlstrong@...
USA CA Becky Thomas THOMAS1435@...
USA CA Katie Turner WTurner489@...
USA CA Harry Wood artwood@...
USA CA Liz Yanni johnyanni@...
USA CO Ed Carroll ECarr62956@...
USA CO Grace Halmi czhalmi@...
USA CO Bob Payne RuBob350@...
USA CO Dexter Payne Dextepayne@...
USA CO Ellie Stites Swanger EllieSS@...
USA CT Sheila Coutant s.coutant@...
USA CT Monte Wetzler mwetzler@...
USA FL Ernie Arevalo MICAROSE@...
USA FL Heather Bailey hbailey@...
USA FL Beverlee Butdorf jabebu@...
USA FL Diane Causey Diane.Causey@...
USA FL Irvin F. Eder irv@...
USA FL Greg Edwards Kitman@...
USA FL Fran Fabian fran_fabian@...
USA FL Jerrie Finkelson deenzer@...
USA FL Robert Finkelson sidesaddlebob@...
USA FL Shirley Grant mimianddadoo@...
USA FL Mike Hagovsky Chagovsky@...
USA FL Bonnie Kehlringer Kehlringer@...
USA FL Stacey Messinger RitzSEM@...
USA FL Nick Morgan xxngm@...
USA GA Barbara Arnold tirement@...
USA GA Tom Burt Turboom@...
USA GA Diane Davis diane_davis@...
USA GA Christie Dixon christiedixon@...
USA GA Jane Koenig jane_koenig@...
USA GA Megan Locke meganlocke@...
USA GUAM James Taylor jtaylor@...
USA HI Harriet Bise HBise1@...
USA IA Celeste Herbold HyFyC72@...
USA IA Lynne Larrew itend4utwo@...
USA IA Theodore Larrew LashLarrew@...
USA IA Tricia Marty-Decoster tmartydecoster@...
USA IA Wanda Paulin pwanda98@...
USA IA Brenda Schumann schuwoman@...
USA IA Gloria Warren warren816@...
USA ID Tracy Adkins tadkins@...
USA ID Lori Chissie lchissie@...
USA ID Donna Ortel DOrtel3706@...
USA ID Bob Rogers bobrogers@...
USA ID Joyce Ward momward@...
USA IL Millicent Chrusciel CANAMDAN3@...
USA IL Richard Doonan r-doonan@...
USA IL Cheri Saley saley@...,shadoww@...
USA IL Ron Swiatkowski NECEDAHRON@...
USA IL Debbie Thomas D3E3B3@...
USA IL Tom Verhoeven Tmstom@...
USA IL Barbara Woodford haq@...
USA IL Greg Nemer110@...
USA IN David Austen davidaus@...
USA IN Kacey Cornett macornett@...
USA IN Marie Fox bingermm@...
USA IN Harriet Gossman Harriettlpn2@...
USA IN Blanche Hartzler BHartz5738@...
USA IN Judy Marten turtle@...
USA IN Celeste O'Neill coneill10@...
USA IN Laura Wilburn lauraw@...
USA KS Sally Lesline slesline@...
USA KS John Trygg jltrygg@...
USA KY Ben Blyton healer4u@...
USA KY Jim McCabe JIMMCC97@...
USA KY Judy Miller B1952miller@...
USA KY Sherilyn Sherry siblings@...
USA KY Florence Young cyoung@...
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USA LA Laura Sabido LSAB123@...
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USA MA Allan Rosenberg AllanRos@...
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USA MD LeDora Babe RBABE89610@...
USA MD Douglas Caprette dcaprett@...
USA MD Cillie Gerstenzang tdhman@...
USA MD Lita Haarer ELHaarer@...
USA MD Beth Hartley humz@...
USA MD John Moller JVM2929@...
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USA MI Renee Cialone-Blanchard Rmcbrn@...
USA MI Sally Jaeger sjaeger@...
USA MI Judith Nesler jenesler@...
USA MI Cheri Slayton slayton@...
USA MI Bob Smith rpi@...
USA MI Karen Thibodeau karens@...
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USA MN Korinne Kramer DOGGYDELI@...
USA MN Diane Rydrych diane.rydrych@...
USA MO Paulette Barry Plettie485@...
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USA NC John Fisher jfisher@...
USA NC Loreice (Lj) Jernigan ljernigan@...
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USA NE Carol Lee bughouse@...
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USA NJ Daksha Joshi dakshaj@...
USA NJ Belinda Joyce kbmjoyce@...
USA NJ Richard Menashe richbart@...
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USA OH Becky Poast BeckyPoast@...
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USA WI Tony Gaines tgaines@...,on.gaineswma@...
USA WI Gloria Roohr-Hyzer countryherbalist@...,
cherbal@...
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USA Marilyn jabski@...
USA Diane LadyDee49@...

I don't think this one was posted here yet.. from the PSP list.. they
are a pretty fun bunch over there. :)
"The Supreme Court has ruled that there cannot be a
nativity scene in Washington, D.C. this Christmas.
This isn't for any religious reason. They simply have
not been able to find three wise men and a virgin in
the Nation's capitol. There was, however, no problem
finding enough asses to fill the stable."

hi vera: i want to give you an update on bob. he's been on mirapex for a
month now & he's not getting improvement w/walking. he cannot walk
unaided at this point & his one foot is freezing. he has an appt. with
the neuro next wk., & hopefully he'll come up with another med. in
conjunction with mirapex. hope everything is going better for you.
regards, & thanks for asking. regards, jerrie

Perry,
Sounds like you have a good doctor there. That is a major help in fighting the
disorder. Keeping a log of day to day symptoms, medicines, benefits of
medicines, timing of meals, temperature, BP, etc, will help the docotr decide
which medicines are working and how well. We are currently using eleven
different medicines for my wife and have done away with at least seven others fo
various reasons. Not every medicine helps every patient, but the doctor needs
to work with the caregiver and the patient to find meds that will help. It's a
team effort and the doctor is only one part of the team.
Studies have shown that regular exercise also helps fight "depression"
especially in PD patients. Many of us still feel that MSA is related to PD and
that exercise can benefit the patient. If the patient can not walk or do
aerobic exercises, they can still do range of motion exercises which help keep
quality of life movement.
I agree wholeheartedly with the "apathy" rather than straight "depression". Too
many people hear of see that this is a "fatal disease". MSA is never listed as
the cause of death. If you just decide that you are going to die, it becomes a
self-fulfilling prophacy. Anne Pledger was told over twenty years ago that she
had a year to live. Charlotte was told almost five years ago by a neuro (we no
longer use) that she had two years to live. Don't believe it.
Hang in there, Bill and Charlotte
======================================================

Subject: Another myth destroyed~~!!!

Merry Christmas!

I hate to be the one to defy sacred myth, but I believe Santa's a she.
Think about it. Christmas is a big, organized, warm, fuzzy, nurturing, social deal, and I have a tough time believing a guy could possibly pull it all off!
For starters, the vast majority of men don't even think about selecting gifts until Christmas Eve. Once at the mall, they always seem surprised to find only Ronco products, socket wrench sets, and mood rings left on the shelves. On this count alone,
I'm convinced Santa is a woman. Surely, if he were a man, everyone in the universe would wake up Christmas morning to find
a rotating musical Chia Pet under the tree, still in the bag.
Another problem for a he-Santa would be getting there.
First of all, there would be no reindeer because they would all be dead, gutted, and strapped on to the rear bumper of the sleigh
amid wide-eyed, desperate claims that buck season had been extended. Blitzen's rack would already be on the way to the taxidermist. Even if the male Santa DID have reindeer, he'd still have transportation problems because he would inevitably
get lost up there in the snow and clouds and then refuse to stop
and ask for directions.
Other reasons why Santa can't possibly be a man:
-Men can't pack a bag.
-Men would rather be dead than caught wearing red velvet.
-Men would feel their masculinity is threatened having to be seen with all those elves.
-Men don't answer their mail.
-Men would refuse to allow their physique to be described, even in jest, as anything remotely resembling a "bowlful of jelly."
-Men aren't interested in stockings unless somebody's wearing them.
-Having to do the Ho Ho Ho thing would seriously inhibit their ability to pick up women.
-Finally, being responsible for Christmas would require a commitment.

I can buy the fact that other mythical holiday characters are men:
-Father Time shows up once a year unshaven and looking ominous. Definite guy.
-Cupid flies around exposing himself and carrying weapons.
-Uncle Sam is a politician who likes to point fingers.

Any one of these individuals could pass the testosterone screening test.
But not St. Nicolas - not a chance.

Hi all,
Here is the biggest recall of poultry products I have ever seen - 16.7 million
pounds. Every state in the USA and at least two other countries. It would be
well to check this site for details - involves many different labels.
http://www.safetyalerts.com/recall/s/00/cargill.htm
Take care, Bill and Charlotte

Penny.... Thank you for that contribution re: apathy vs depression .... you
will never know how important that difference can be to be able to talk to
Dr.s and family about the problem ..
thank you
sheila

I have a comment that may be helpful both to CDejong [@aol.com] regarding
her request for help for her "mum," and to the group at large.
First, I am relatively new to the group and have introduced my self earlier
to the group. My wife, Terry, has been diagnosed as having MSA[i.e.
specifically Striatonigral Degeneration] after having been diagnosed as
having Parkinson Disease several years ago. Her MSA diagnosis has been
within the past year. Fortunately, her rate of progression seems to be
slow and I have not had a lot to offer the Shy Drager Group to date. Our
confidence level in this diagnosis is fairly high based on dialogue with
our neurologist and what I read in this group.
With the "help my mum" message and the related responses, there were
references to depression. It has been our experience in Terry's case that
she is experiencing apathy which is frequently mistaken as depression in
nuerodegenerative situations. Her neurologist at the University of
Virginia[in USA] is quite confident we are dealing with apathy and not
depression as I have had them spell out their rationale. He points out
that apathy is common in nuerodegenerative diseases. Her neurologist
brought in a geriatric psychiatrist to administer medications to treat the
apathy. He has tried several on a serial basis as this is necessarily a
"cut and try" approach with MSA diseases. He observes both the positive
and negative effects of each medication over a period of time and uses this
information to change dosage or the specific medication. We are now on the
fourth medication and we see slight signs this one may be helping; it is
too early to be sure.
Two points based on our experience:
1. As in all cases of MSA, each one is different, and the physicians
involved frequently do not have the experience to manage the disease.
2. Apathy, not depression, is frequently an important effect in
nuerodegenerative diseases..
Perry Sennewald 804-244-0018

Dawn - thank you -- I am in the UK -- and will do anything or go
anywhere to help her. I have in fact already taken her to two
different specialist's and 3 doctors who have all said the same.
Mum was told for 3 years it was depression and is told daily from my
dad that she is doing it for attention - he is not a cruel man just
will not accept this situation.
Thanks for replying - I cannot tell you how good it feels to be able
to speak to someone.
Caroline
--- In shydrager@egroups.com, "Dawn E. Morley" <dawnmorley@m...

Hi Kathy,
That's not an uncommon reaction, I've heard people say that before and I've
felt that myself in the past when my mother-in-law was still alive and my
grief was close to the surface. How many nights I sat here and cried a
river after reading people's stories... I can't even count. Eventually
though you get to a place where you can see that good things can come from
bad. Your husband is ill and we wish he wasn't yet now you've met so many
wonderful people because of it. It makes no sense does it? Learning to
accept life though.. both the good and the bad is what this journey is
about.
Hugs,
Pam

Sally,
I live in SE Nebraska(Falls City). I am only a 2 hour drive from the KC
airport. I originally went to KU because they thought I had MS. I saw a
neurologist by the name of Sharon Lynch. After they rule dout Ms and told me I
had Shy-Drager they recommended I see Dr. Myawacki. I haven't been back yet.
This Dr Myawacki is my father's PD doctor and I don't particually care for
him. Yoou do you see at KU? There is no other doctor around here that I can
find that specializes in this disorder.
Thanks, Meg
"Trevada Granberg" <TGRANBERG@...
Hi Sally,
That's what I figured about the symptoms - Too many and too varied.
Thanks again for your help.
My husband's sister went to Kansas State University, and his aunt use
to live in Manhattan.
Take care,
Trevada

To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Hi everyone, I have a confession to make. The first night I read all
of the emails from the group, I wanted to unsubscribe to the group. Some of
the things I read really depressed me. The next morning I reconsidered and
thought, I'll give it one more try. I'm so glad I did because I find myself
looking forward to your emails. As I said before, there is no one here that
I know of that has MSA and when people ask me what is wrong with Dave and I
tell them, they look at me like what are you talking about.. I am very
thankfull for your words of encouragement and advise.
thank you kathy

I realize that someone has already given you the contact info. We learned
of the superpole from Sophia at the Cleveland meeting. I want to tell you
that one at our dinning table has been very helpful to my husband. He
sleeps in a hospital bed with a traipese bar to be able to get in and out of
bed or to move once he is in the bed.
I also say this to tell you how valuable the national conference was for us.
Marilyn in TN

Pam,
That sounds like a great meeting, wish I could go. I like the alphabet
disorders thing.
Hugs, Bill and Charlotte
======================================

Karen,
I really like the last line.
Take care, Bill and Charlotte

Kathy,
Welcome! My father is the one with MSA (Shy-Drager symptoms at this point).
I happen to be a speech therapist and the fact your husband has a trach
caught my eye; does he have a way to communicate with you? Has he worked
with a speech therapist for this? Just curious.
Rose

Ann,
Here's the information about the Super Pole:
the web site is www.healthcraftproducts.com
the phone number is 1-888-619-9992.
By the way, if you ever need to find something we've talked about in
the group before, you can do a search very easily. Go the the upper
right corner, where it says "search". In one box it says "this
archive" - leave that like it is. To the right, type in a couple of
words about what you're looking for - in this case, super pole, or
just pole. You'll get all the messages that have that phrase in
them! Try it, it works. Saves lots of time.
Enjoy!
Carol & Rob

Mary,
Hope the test come out OK. You will be in my prayers.
Ann from Soddy,TN

Hi all,
Back some time ago you posted info on the pole that helps getting out of
bed, at that time I did not keep the info. Now we are getting to the
point of needing the pole. If anyone still has the place to order them I
would be most grateful.
Thanks for all of you help in the forum.
Ann from Soddy, TN

Jennifer,

With a doctor's prescription, Medicare will pay for both. At least the portion they pay (75-80%). Our supplemental (BC/BS) will pick up the rest of what Medicare says it's worth. However, on the wheelchair Medicare will not pay for things like detactable wheels, pneumatic tires or a tray. So I paid for them. Medicare actually rents them for 10-15 months, then gives you the option of owning it (and paying for repairs yourself) or continuing a manitenance agreement which Medicare will pay for.

Take care, Bill and Charlotte

Dear CDejong@... - whoever you are.
You have come to the right place. There is a lot of information here and I
believe some things can be done to help your mom some. First of all where
do you live? Are you in the states, Europe -- Mum makes me think you are
not in the US. If you post up where you are somebody will be able to give
you some advice on what doctor close to you has experience in working with
somebody in your mom's condition. More than likely your mom's doctor just
gave you the brush off because he doesn't know what to try to help. This is
not unusual and it also is not unusual for people to think people in your
mom's shape are mentally ill. Even the doctors do this. My sister's doctor
told her the problem was anxiety. The problem is not anxiety. We are not
God's here but there maybe some action you can take to help your mom. But
you have to start with finding the right doctor. MSA is a degenerative
neurological disorder. The condition is very variable. Sometimes people
live a fairly long time. Sometimes they are really bad and then sort of
snap back. My sister could barely walk in the first part of this year but
with medication is now pretty mobile. Most of all, just tell your mother
you are going to keep trying to help her and that you will not give up that
mission. When you are so sick you can't do for yourself and it may give her
some peace of mind to know you will continue to try to help her in anyway
possible. First of all, tell the group where you are.
Dawn - Celeste O'Neill's sister

I've been in contact with Karen Kennemer from the Houston, Texas area. She
leads a support group that includes people with MSA, OPCA, PSP, CBGD and any
of the other Parkinson's Plus disorder. She calls them the "alphabet
disorders".. pretty appropriate I think!
This group meets the third Saturday of each month at 1:00 PM at
the Memorial Hermann Southwest Hospital Professional Building II,
Learning Center B.
The hospital is located at 7737 Southwest Freeway at the Beechnut Exit
Karen writes:
"This Saturday, December 16th, we will have a neurologist from the Baylor
Clinic speak to us. I have provided him an advance list of questions
submitted
by our group members, and I personally threw in several asking for a
discussion
of the various brain disorders, their similarities and differences. Please
contact others in this area and tell them about the meeting this
weekend:
December 16th, 1:00 PM, and tell them to call me for more information"
Karen's contact info is as follows:
Karen Kennemer
2235 Cedar Falls Drive
Kingwood, TX 77339
USA
281-358-2282 (fax, too)
email: KMK1224@...

Hello - I found you tonight and am so very grateful -- my mum has
been diag. and is in a very bad way. Initially she was told it was
Parkinsons but after a rapid decline has now been told it is MSA.
Basically she has given up and so has her specialist -- they gave her
very little information - prescribed her sinemt (sp) 3 times a day
and basically that is it.
I phoned his secretary to ask why she didn't have a follow up
appointment and was told - they was nothing esle they could do for
her and didn't think it was worth putting her through the car
journey. (1 Hour).
I have taken her to the local GP who knows nothing about the
condition but said he would make her comfortable -- this has scared
the life out of me -- does this mean she is dying - I know that
sounds naive - but why isn't anyone doing anything for her. Is this
normal? I really need to know as my dad is in denial and keeps
telling her it is all in the mind. He has no idea this many be
serious and refuses to find anything out about this condition.
I have come on the net to try and find out some info and help her in
anyway I can. I love my mum very much and just don't understand what
is happening.
Mum is very depressed, she can hardly walk and is in a wheel chair,
her voice is barely a whisper, she has problems with her water works,
she can barely hold a pen , she cries and has hysterical outburts,
her face seems sort of fixed and she is terribly tired and hurts all
over. Her voice is going slurred and some days she has no interest in
anything. She also falls over easily .
Worse of all she is frightned and I so want to help her.
Can anyone give me any advice - can anyone tell me what stage they
think she is at.
I am so sorry for the long post - I am at my wits end.
Thanks for listening to me rambling on and I apologise for my typing
or spelling - I am not the best on the computer.

My father, MSA diagnosed, just began trying the use of a condom catheter at
night. We ordered a kit which includes only a week's supply of catheters. I
was told that if it worked out, we might wish to purchase a different model
which works better for long term use, or continue with this model but will need
to purchase additional catheters.
Any helpful hints on the use of this product, or on specific brands that work
better than others? Latex or not? Ours was ordered from a company on the
internet.
Thanks so much.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633

Jim
You might want to check to see if it is a pinched nerve. One complete
side seems a little odd but then stranger things have happened.
I ended up in ER 2 months ago with tingling and numbness in my left
hand, arm, shoulder, neck and left side of my face. I felt fine
otherwise and almost didn't go to the ER because I was sure it was from
sitting at the computer for several days in a row. Decided not to be
dumb and had it checked out after I called my doctor to tell him what
was going on. His response, head for the ER now!!!
An hour later, I was assured that yes, I was right, it was a pinched
nerve in my neck. I did sleep better that night knowing that's all that
was wrong.
So, it could be a MSA problem, it could be something else. It's
probably time to check and see. Hope it's nothing to worry about.
Sally

Mary
Please take care of yourself. I've been worrying about you. Keep us
posted on what's going on with both of you.
Sally

wow PURPLE! love it. is it a quickie chair??? the brand quickie. mine is
red. what does it look like??headrest ?? legs?? ok ecco makes plum
/eggplant purple boot and shooe. not kidding here. gray looks good too.
just a xmas hint bill for something to match that new chair. Purple is a
big color this year!
nancy m.

Trevada
Symptoms............ too many and too varied to really list them but I
do have articles with many listed. I'll see if I can pull them up this
week-end.
I think one of the biggest problems with the eyes is that they get so
dry and hurt so bad and it doesn't take much to get infection in them
because there is nothing there to keep them clean and washed off. Many
use different types of eye drops. It is a constant battle. Also the
eyes don't function as they should in vision because the message relay
in the brain doesn't work. Many eye Dr will not be able to find
anything wrong with the eye itself and if they don't understand MSA they
don't understand why the patient is having trouble.
We live in NE Kansas, the land of rolling flint hills. We live 40 miles
west of Topeka and 15 miles east of Manhattan and Kansas State
University. We are about 2 1/2 hours from the airport in Kansas City.
A trip we make many times a year.
Sally

ok
PT is my favorite choice. I don't have faith in chiropractors Sp?) My
opinion not law:) In order for my PT exercises to work I need it 1 hour
at least 2 times a week. The other times I am doing it with assistance
about 2 times a day. I have to clue myself into not only putting my
shoulders back but ALSO down so they are not hunched up . Another thing
I watch for is that I do not protrude my neck. All this is very hard and
discouraging , but I gotta do it !!Do not lead on a grocery cart either.
You will hutch over. Use the dumb walker:) and make the arms of the
walker high enough so u don't hutch. If will be a pain at first , after
a month it may be gone. However, over the month it will slowly go away-
i.e. the pain. Another thing I am gonna try is have the PT tape my
back with sports tape in a x across the back . This way when I get lazy
I will be cued into sitting up straight and proper.
PLEASE do ur stretching properly. Don't bounce when u stretch. U can sit
and stretch ur upper body too as oppose to standing. Caregivers help so
that the patient is secure while stretching. Sometimes it feels like
you're gonna fall even if u aren't.
OH and caregivers what ever ...if u see ur spouse /patient hunching says
'head' or 'neck'
My son does this and nags me into self correcting or he does it for me.
I rather do it myself:)
sincerely,
nancy m.

good luck luv ... go enjoy ... and good for you for pushing on ..
cheers
sheila

Bill,

Did medicare pay for the hospital bed or just the wheelchair? We are planning to get Dad a hospital bed, mainly to keep Mom from breaking her back. Is there any particular place to get them? Any bargains out there?

Thanks,

Jennifer Worth

I get asked many times when a person will know they need assistance.
Sometimes when u start questioning urself , u may very well need
assistance. Whoa I am not pushing N
4 program that has abled me to stay at home. I am not at all the stereo
typical NH patient. I need assistant period. No question. I can't drive,
need help in and out of the bath, preparation of my minute rice. ensure,
stuff like that. I can choose like some of you to sit at home and wait
or I can choose to go out. I get extremely fatigues, and tremor ALOT
among other things. I don't care, I love to go out. Now my outtings
consist of go to rehab and therapy mostly, and try to do crafts,ect.
My last aide quit as usual:)I hate soap operas and I don't like paying
people to talk on their cell phones:)
SOOOO...being as vocal as I try, I cried, then thght shoot get on the
phone. There must be a way out. Called my caseworker. She was learly of
asking if I want Day Care. 8:30 -3 I said do they have a pool and
exercise place?? YEP. Didn't ask about the computer , but I am sure I
can get that installed somehow. My son is going to take me next week. He
doesn't know that yet:)Medicare and medicaid cover the pool 2 times a
month and 80. for the pool and exercise when waver u want! 80 bucks!
Thank God. SOunds silly but i knew somehow things would work out.I do
get frustrated though.More and more young people are taking advantage of
day care and the pool/ exercise facilities. I am going to visit it next
thurs and will let u all know what it is really like:)
If u need a place to go to work out or swim for the day think about
looking into one. Think of it as a exercise club only the govt. helps
pay for it. Thank God, otherwise I couldn't afford it. A generous man
donated the aqua therapy place. It is HUGE and has everything.
Corporation and the government actually working together. One couldn't
do it without the other.
sincerely,
nancy m.

Pam
In Europe there is to be a trial involving Riluzol starting early next year,
to see if it will slow progression in MSA. As I think I have posted before,
there is also going to be a study into the natural history of MSA - the hope
is that this might help in understanding the cause.
Charles
England

see what good organization and a lot of willing hands can do ....
great story
cheers
sheila

Bill,
Charlotte's new chair sounds pretty neat! Are you going to have to
coodinate her wardrobe to match the chair? ;-)
Weather here is pretty yucky too. Woke up to about 2 inches of snow,
but it has since turned to rain, making what's on the ground a nice
heavy slush. I'm debating about going out to shovel the front walk,
but I may just wait until tomorrow, when it should be warm enough to
melt the stuff. This is my LEAST favorite part of winter! (My most
favorite being the END of winter and beginning of spring....)
Good day to stay inside, catch up on laundry and get the house ready
for all the Christmas company that starts arriving a week from today!
Stay warm!
Carol & Rob

Hi all,
Weather here is yucky. Ice all over. Our schools were delayed two hours, then
Mitch's (17 y.o.) bus was another 15 minutes late. Shane called to tell me that
a tree limb was down in his driveway and now another two trees are down on his
fences. He still does not go to scholl for another hour. At least the roads
have cleared up now.
I see that Barb has the same temperature in Texas, that we have here 29 deg F.
and according to my weather, even Boston is 29 deg. Pam is even colder. I see
some really cold areas in the midwest also.
Hey Nan, are you frozen! Haven't heard from you lately, you must have that new
job now. Where are all our other old timers? Becky Thomas, David Haight,
Annette? We heard from Harriet, and Tom Burt recently and Anne is baaack!
Hey Anne, do you and Tony have a Holden? Does Santa use a road train in Oz?
:o) Which side of the road does Santa drive on?
Charlotte has her new hospital bed now. Her wheelchair is ordered - our great
and glorious Medicare is paying about $2100 for the chair and I am paying $535
for accessories, when I could have bought the exact same chair the way I wanted
for $900. The PT did come in to fit her, and added a $200 insert to hold
Charlotte upright in the chair and strap her in so she will not fall over to the
right which added about $200. Charlotte picked the color - deep purple :o) We
will only get a few more PT sessions, but maybe a month of ST.
Take care, Bill and Charlotte

Sheila,
Actually, mom and dad moved here from St. Louis in 1940 and my uncle (married to
her youngest sister) was a full colonel in the Air Force stationed here when he
retired. Together that puts a lot of the family on the east coast as they had
the two biggest families.
We did have more people to work on logistics here and had more homes to bunk
people in this area than the St. Louis area. I rented the park (six months in
advance) and sent out the info packets, my sister contacted motels and airlines
for rates, and my brother's businesses bought the bulk of the food and
supplies. A couple of cousins helped track down names and addresses. Final
details went out 7 weeks before the reunion. It was also the first reunion in
25 years. It was great, because my mother died only three months later, and
before the next reunion. We also had a covered pavilion in case of rain (big
enough for 100 people).
The one in St. Louis had really only one cousin working on it. We did not get
final info until 17 days before the reunion and could not get low airfares.
Something that big takes about 5 people to handle the workload effectively.
Take care, Bill and Charlotte

Dear Dawn,
I agree that Celeste may have REM sleep disorder. Bill also had wild
dreams way before he was diagnosed. I woke up many a night with his
kidney punches!
St. Vincent Hospital on 86th Street has a sleep disorder clinic -
name of Dr. is Cartwright. Bill had a sleep study there. Riverview
Hospital in Noblesville also has a clinic.
Marie

Hello everyone,

I have found the site which gives all the email addresses for congressmen and representatives. To access it, Click on the address below:

http://www.webslingerz.com/jhoffman/congress-email.html

God bless,

Jim Stark

Vera,
My mom's family was also 5 girls and two boys. Mom was the second oldest and
outlived all but one. We had a reunion of that family here in 1997 and had 99
people here. A later reunion near St. Louis (where she was born) only had 67
people.
Take care, Bill and Charlotte

the difference in participation of family members must be your location near
Wash DC/Williamsburg/ and good transportation ;-]
of course, they might have wanted to see you and Charlotte and your mom also
;-]
cheers
sheila

Debbie:
I know it's got to be really hard. I think I told you that one of my
girl friends mother passed away about the same time as your. She had
had cancer for 16 months. Cindy also lost her dog just weeks before
she lost her mother, She now tells me that she had been a caregiver
for so long, that she doesn't know what to do with herself now. It's
not easy , but time heals all they say.
I;m sorry about you dog. I do know how a pet can become part of us. I
lost my lab-golden ret mix eight years ago next month to cancer and I
still miss that dog. We got him when he was only 5 weeks old and he
was 11 1/2 when we lost him. He had been heathly till the last. He
had always loved chicken. When he was just three months old, I had
the kids put him in the house while we took out the trash cans.
Heather was only 5 at the time, so she was in the house making sure
that Midnight wouldn't get into anything while the boys and I took
the cans out. I had a small bag of trash in the kitchen that still
needed to go out, it had a chicken neck in it from the dinner that I
didn't fix. Well Heather came out and told me that midnight had
gotten in the bag of trash and had gotten an apple core. I knew that
there wasn't any apple cores in the bag and then I remembered the
chicken neck and I knew what he had gotten. You should of seem me
trying to get this chicken neck out of this three month old puppy.
I'm trying to get it and there he is growling at me, he ended up
taken the whole neck down his. I knew that dogs shouldn't have
chicken bones, so I knew I had killed this dog, I called the vet and
he tolded me just to watch that he had his movement the next few
days, if not bring him in. Boy this was worst then the kids being
sick. Anyway when he ended up with the cancer, we found out because
Fred had taken out some chicken to him and he wouldn't eat it, It was
there the next day, without any of it gone. So we knew that something
wasn't right, and that's when Fred went to the vets with midnight and
came home without him. The vet said that there was no hope for him
and it wasn't right for us to let him suffer. I still have his collar
with the tags, Just can't get rid of them. He will always be apart of
this family, He is always in my heart . I really do know what you are
feeling about this dog. Mans best friend and womens too.
Love Vera

Maybe I missed it before, but what is CBGD?

Jennifer Worth

Bill:
I have seen the pictures of the grandkids on the web site that you
have. So I know you have someone there to help take your side. In
our house it use to be three man to two woman, but now that the boys
are gone and Heather is back , it's three girls against one man, but
then Fred got use to that along time ago. He came from a family of
seven kids. Two boys and five sisters. Talk about being out numbered
Whew.
Just having fun , giving you a bad time.
Vera

We sure do Bill!! Believe that is that all pollies lie, cheat, fool around
etc. Guess there must be some decent one's but of course you never hear
about them!
Are you setting up rumours or was Pam a show girl??!! :o) Must say she does
look as if she could have been.
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Of

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

Hi Debbie, thanks for thinking of me. I hope to that there will be a quick fix. Not plaque though it is scar tissue, so you cant wash that out.

Just don't know if Dad will rally now. He is very unhappy, at war with the world and everyone in it. So sick too. It is still wait and see.

How are you coping Debbie, been thinking of you too. Love Anne

Anne, Sorry to hear about your bypass, but glad there is an explanation. Let's hope there is a good fix for it. Also, hope your dad

Hi Sheila

Now this rebuttal I like!! LOL. Well done Sheila! Just wondering when Bill dropped his antlers!! LOL. Love Anne

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

According to the Alaska Department of Fish and game, while both male and female reindeer

Hi Sheila

I loved this, made me laugh. Reckon I could do well on a research team like this one. What fun! :o) Love Anne

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

Sunday , November 26, 2000

Today we present: Masculine Medical News for Men.

Hi Bill

Thought your rebuttal wouldn't be long in coming. Definitely not joining your research team. It is totally, totally biased and definitely a load of crock!! :o)

Still loves yer though Anne LOL

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

First of all on men's hormones - my long experience leads me to believe that

Hi Eoin,
What is aqua Hydration? Is it suplement or some kind of water therapy? Also
what is Bowen Therapy? I take my Mother (who has Shy-Drager) to water
therapy 3 time a week for about 45 minutes and then use oils on her for a
back and neck massage. She loves it and wishes she could do it every day.
But we are not wealthy folks here, she is in a Nursing Home and they just
don't have the staff or the resorces to give her one on one.
Mary Ann, MN

Beautiful Barb
mailbox:/C|/Program
Files/Netscape/Users/ralsk/mail/inbox?id=LPBBIJNDGJHOKOLLJAFLMEDFCDAA.budlet%40h\
it.net&number=33189&part=1.2

Has anyone used aqua Hydration?I'm giving it a go along with Bowen Therapy
It's supposed to help!
The one who advocates it here,was diag.M,S.A.about 3or4 years ago& is now
'symptom free",sounds good,I'll keep you imformed.
Eoin.

Dawn,

You will probably be able to cut back after she gets somewhat regular. I would aim for a good BM every other day.

Take care, Bill and Charlotte

Jim,

I've already written my Senator (Warner) and Representative. I'm sure Allen will also be against the research from the people who supported him, but will send him a duplicate letter after Jan. 1. If you have Republican Congressmen, remind them that Arlen Spector strongly supports this research and that the cost of care is staggering.

Take care, Bill and Charlotte
=========================================================

Jim, I wish I could help more with this one. My mother Joyce experienced numbness and tingling in her left foot forever. She had broken her left ankle from a fall (prior to any diagnosis) and she always felt numbness in that foot since then. The neuro said that it should work itself out, but it never did.

Perhaps someone else has a morAAIAformative response, Debbie

Debbie White
dwhite@...

Dawn,
Celeste may or may not have sleep apnea, but I'd bet $50 (and that's
a lot for me!) that she has a REM behavior disorder. In "normal"
people, there is a chemical "switch" in the brain that turns off
motor activity when you're in REM (dream) sleep. For people with REM
behavior disorder (which is common in MSA) the "switch" is defective,
so MSA'ers tend to act out their dreams. (ie "She wakes up
swinging.")
For my husband, who also has sleep apnea, the REM behavior disorder
was the very first manifestation of his illness, and preceeded other
symptoms by at leasts 5 years. He takes klonopin (a/k/a clonazapam)
to control the REM behavior disorder. For him, this was a big
problem. Actually, it was more a problem for me! He once tried to
strangle me, and once walked down the stairs and out the front door -
sound asleep. He thrashed around so much that he fell out of bed
several times - no broken bones, but some nasty bumps and bruises. I
still recommend that Celeste get a sleep study done by someone
specializing in sleep disorders who can properly diagnose and treat
this.
Rob was working 60 hour weeks when he started with this problem. He
was ALWAYS tired, but he kept going, and did not sleep during the
day. It'a amazing what the human body can adapt to.
Good luck!
Carol & Rob
--- In shydrager@egroups.com, "Dawn E. Morley" <dawnmorley@m...
concerning constipation. As it turns out we went to the drug store
and got some Colace and for now it seems to be really helping.
seen too concerned. Although he did try to encourage us to go back
to the Mayo Clinic. The Neuro is a very good doctor and we like him
LOADS. However, he says his Neuro group does not have vast
experience treating people with MSA. We told him about this web site
and he was glad to know of it. When we mentioned the possiblity of
sleep apnea he said he thought if that was a real problem Celeste
would be having trouble staying awake during the days. She only
sleeps a few hours at a time but claims she feels fairly rested when
she rises at 4:00 AM most mornings. She uses the Restoril and it
helps some. She claims she wakes up kind of having dreams that
someone is in the room or breaking into the house. She says she
wakes up swinging. Could this just be because she is not sleeping
soundly? Some of you recommended a sleep specialist. Do you still
think she could have sleep apnea since she is sleeping so little even
though not sleepy during the day. We live in Indiana and really
don't want to have to travel to Minnesota. Any thoughts out there in
cyberspace?

Hello All,

Has anyone had numbness and tingling suddenly appear on one side of their body. This includes, Face, Shoulder, Arm, side if body, and leg.

It came on so suddenly, it's got me concerned.

God Bless,

Jim Stark

Bill,

Bush is in there now. What can we do besides a write in campaign, over the stem cell argument.

If anyone is going to do anything, it has to be us, the ones who have the diseases or are caregivers to the patients!

God Bless,

Jim Stark

Corticobasal Ganglionic Degeneration Links:
http://www.neuro.nwu.edu/meded/MOVEMENT/corticobasal.html
http://www.parkinsonsinstitute.org/movement_disorders/corticobasal.html
http://www.ninds.nih.gov/health_and_medical/disorders/cortico_doc.htm
http://www.wemove.org/cbd.html
http://www.bcm.tmc.edu/neurol/challeng/pat17/summary.html
http://rarediseases.info.nih.gov/ord/news-reports/workshops/corticobasal0007
08.html
Progressive Supranuclear Palsy Links:
http://www.neuro.nwu.edu/meded/MOVEMENT/psp2.htm
http://www.parkinsonsinstitute.org/movement_disorders/progressive_supranucle
ar.html
http://www.ninds.nih.gov/health_and_medical/disorders/psp.htm
http://www.wemove.org/psp.html
http://www.parkinson.org/texthtms/tpsp.htm
http://www.psp.org/
http://www.ion.ucl.ac.uk/~hmorris/index.html
Multiple System Atrophy Links:
http://www.neuro.nwu.edu/meded/MOVEMENT/msa.html
http://www.parkinsonsinstitute.org/movement_disorders/multiple_system.html
http://www.ninds.nih.gov/health_and_medical/disorders/shydrger_doc.htm
http://www.wemove.org/msa.html
http://www.parkinson.org/atrophy.htm
http://www.shy-drager.com
http://glaxocentre.merseyside.org/msainfo.html

how wonderful .... I think I may need to visit Australia at this time of year ... guess I didn't win the trip ;-]

cheers

sheila

Absolutely!
Elaine Grimmesey
Would anybody have interest in my drafting one page letter to send to George
Bush about supporting blastocyst stem cell research. If I wrote it I think I
could post it and others could just sign their name to it and mail it. I would
be happy to work on this if there is interest.
Dawn Morley - Celeste O'Neill's sister

Would anybody have interest in my drafting one page letter to send to George Bush about supporting blastocyst stem cell research. If I wrote it I think I could post it and others could just sign their name to it and mail it. I would be happy to work on this if there is interest.

Dawn Morley - Celeste O'Neill's sister

Thanks to everybody who gave advice to me for my sister Celeste concerning constipation. As it turns out we went to the drug store and got some Colace and for now it seems to be really helping.

When we discussed the sleeping problems with the neuro he didn't seen too concerned. Although he did try to encourage us to go back to the Mayo Clinic. The Neuro is a very good doctor and we like him LOADS. However, he says his Neuro group does not have vast experience treating people with MSA. We told him about this web site and he was glad to know of it. When we mentioned the possiblity of sleep apnea he said he thought if that was a real problem Celeste would be having trouble staying awake during the days. She only sleeps a few hours at a time but claims she feels fairly rested when she rises at 4:00 AM most mornings. She uses the Restoril and it helps some. She claims she wakes up kind of having dreams that someone is in the room or breaking into the house. She says she wakes up swinging. Could this just be because she is not sleeping soundly? Some of you recommended a sleep specialist. Do you still think she could have sleep apnea since she is sleeping so
little even though not sleepy during the day. We live in Indiana and really don't want to have to travel to Minnesota. Any thoughts out there in cyberspace?

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

Subject: CHRISTMAS IN AUSTRALIA

I THOUGHT I WOULD FORWARD SOME OF AUSSIES SPECIAL XMAS TUNES TO YOU

LOVE ANNE

AUSSIE JINGLE BELLS

Dashing through the bush in a rusty holden ute

kicking up the dust, esky in the boot

kelpie by my side, singing christmas songs,

it's summer time and i am in my singlet shorts and thongs oh!!!!

CHORUS

jingle bells, jingle bells jingle all the way

christmas in australia on a scorching summers day oh!!!

jingle bells, jingle bells, christmas time is beaut,

oh what fun it is to ride in a rusty holden ute.

Engines getting hot, we dodge the kangaroos,

the swaggie climbs aboard he is welcome too

all the family is there, sitting by the pool

christmas day in the aussie way, by the bbq oh!!!!@

Chrous

Come the afternoon grandpa has a doze

The kids and uncle bruce, are swimming in their clothes

the time comes round to go, we take a family snap

and pack the car and all shoot through

befor teh washing up, oh!!!!!!!!

Chrous

Oh what fun it is to ride in a rusty holden ute.

DREAMTIME CHRISTMAS

Theres no drummer boy

no tall christmas trees.

by our campfire that i can see.

who were the three kings?

where's bethlehem?

i've lived in alice springs,

since i remember when.

'cause in the dreamtime.

Its christmas all year round.

peace on earth

and love abounds.

There's no reindeer here,

only silent night,

for sixty thousand years

before jesus christ.

we haave peace on earth,

goodwill to all

in our dreamtime

that i can recall

'cause in the dreamtime

its christmas all around

peace on earth

and love abounds

in the dreamtime

dreamtime.

we dont need drummer boys

we dont need christmas trees

we have our dreamtime history.

Hi Diane

Thanks for the welcome back. It's wonderful. I missed you all so. Love from Anne

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

Welcome back, Anne. We all missed you. Smiles and hugs, Diane

Thanks Pam. Your Aussie /American translator didn't get it quite right this
time!! :o) Rorting that has been going on here , well from the last
elections, is a bit different. Pollies who were a bit short of votes in
their hope to be elected, moved people around. Especially family members
and friends, so they could vote twice from two addresses. It is now coming
to light. Had quite a few resign over it now.
Tell that Bill guy to re-read his translation book :o) LOL
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller

Hi Both
You are totally right Bill, I am definitely not up at 6 AM !! Mind you, you
could all tune into talk and listen to my sleep rambling's!! That could be
interesting according to Tony :o)
Are we talking proper footy here Bill or that American woose game?!! :o)
Must take ages for a match if they have to rest every few minutes :o)
Love from the Banana Benda.
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
have a

Hi Debbie
Thanks a lot, good to be back. Trying to catch up with mail now! Well,
what's new. Always was a bit slow :o)
I will feel better I THINK when it is decided what and when they will do.
Unfortunately Dad is not improving. Yoyo's up and down but mostly down.
Mind no-one has any idea how he has got through what he has all ready. So
many medical ails as well as severe dementia.
Great to hear from you.
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller

No Debbie, Ken's neck was arched back. He couldn't look down at all. It
seemed on the PSP list serv, that some were back and some were down, but
most were rigid.
Bernice

Debbi's sister had MSA and she and her husband Nick were members of this
list for a long time. Nick was diagnosed with cancer and is undergoing
chemotherapy right now. She wanted me to pass along her regards.
Hugs,
Pam

Kristine,
While we don't have a lot of local groups, we do have some for MSA. Many such
as the Washington, DC group have so far only been "support" in meeting to share
feelings and concerns. We seem to share most of those problems with cbgd
patients and caregivers. I am sorry to say that while I know quite a bit about
MSA and PD, I have heard very little about the other PD Plus disorders. If you
have any members in the Washington, DC metro area, we would love to have them
come to our meetings. We tend to have informal meetings at parks or public
places such as malls, and mostly spring and fall as weather makes it difficult
for the patients in summer and winter.
We do piggyback on the local PD support group for meetings where they have
someone from NINDS at NIH or other research people speak. There are often other
caregiving talks either through PD groups, Agency on Aging, AARP and other
meetings that we watch for.
I'm sure that you could pass on the list of regional or local MSA groups and we
would be glad to have them attend. We do have many of the same difficulties.
Late stage PD patients also seem to share these same problems. Some of our
greatest concerns now, is how do we get some sort of "maintenance" physical
therapy, is that also a concern to cbgd'ers?
Anyone interested can join our group (I send about 1-2 emails a month) by asking
me at bwerre@... (warning that may change after March 1, 2001.
Take care, Bill and Charlotte Werre

My mother Joyce did not have pain either. Nor could she move her neck. Was
Ken's neck flexed down? Debbie
Debbie White
dwhite@...

S. Wood,
They have looked at all kinds of things and never found any direct
relationship. For instance, I worked around hydrocarbons, solvents and other
highly toxic chemicals all my adult life. Charlotte had very little exposure to
any chemicals, yet she got MSA.
Many of the chemicals you were exposed to (toluene, hydrocarbons, petroleum
distillates) are harmful to your liver. However, many people with MSA have
never been exposed to them at all.
That is why research has to keep going in this area.
Take care, Bill and Charlotte Werre in Herndon, VA, USA
==============================================

Hi Bernice,
I'm sorry for your loss, do you have family close by? The holidays
will be sad this year without him.
I'm curious if Ken had any of the autonomic problems which are common
to MSA, especially the orthostatic hypotension. If he did I'm
surprised his doctors missed on the diagnosis.
If he didn't though then I can see how they could be confused as the
rest of the symptoms seem to be pretty common among all of the
Parkinson Plus disorders.
I wonder if the Bower and Bowers families are related. I have a
record of my branch of the Bower family going back to Koblenz, Germany
circa 1750 if you're interested in comparing notes.
Regards,
Pam
Nova Scotia, Canada

Hi Woody,
That might be part of it. There is a theory that toxins might play a
role in neurodegenerative disorders, most likely in combination with
an inborn trait that makes some people more susceptible than others to
the effects of toxins. This theory hasn't been sufficiently proven
yet though to say for sure. There is another theory that some virus
might play a role in some neuro disorders... anything is a possibility
at this point. These are complicated disorders and the brain and
nervous system are still a mystery. It never hurts to wonder out loud
, eventually someone will figure this out.
Take care,
Pam

I'm not eligible since I don't live in the US but maybe one of you will
win and go see Aussie Anne. Even if you don't like the band .. so
what... a free trip to Australia!
http://reg.mp3.com/register?pitch=sephora4
Hugs,
Pam

And one more about drooling. I don't know anything about the
medications mentioned, maybe Bill or Jim will look them up for us.
Hugs,
Pam

You are sweet. I am doing OK.
I recently corresponded by e-mail with the doctor that resuscitated my
mother and who helped us release her the next day by turning off the
respirator. It turns out, it graduated from my high school 4 years earlier
than me. ANyway, I resisted the temptation to have him walk me through the
exact steps that took place before my mother went into cardiac arrest (if he
even knew them). Resisting this is a huge feat for me. But I realized that
it wouldn't bring me what I want -- my mother. And it wouldn't even bring
peace of mind.
My family is redefining itself without my mom and I am hoping to have my dad
here for the holidays. My dog with cancer is in kidney failure now and trips
for IV fluids and to the local deli for the turkey slices that she'll eat
keeps me distracted. This particular dog is my best friend and although I've
lost plenty of animals before, I didn't know how I would get through this
one. But my mother has taught me well. There ain't nothing harder than this.
Hope you are well, Debbie
Debbie White
dwhite@...

Pleae unsubscribe me from this group.

My mother Joyce had a severe head flex. Her neck turned her head completed
into her chest, making it impossible to see the world. ANyway, she always
decribed it as a heavy head, but insisted that in her case there was no
pain. She used heat compresses and went for PT and to an osteopath. She
tried acupuncture, but it did nothing to lift the head.
I would suspect that pain could be caused by muscles pulling? And I would
think that anything to relax the muscles (PT, heat) would help. GOod luck.
Debbie
Debbie White
dwhite@...
http://explorer.msn.com
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Hi Kristine,
Oh dear, I'm sure no one thought that about your group. My comment
yesterday was not meant to be critical of your group in anyway. We all
know how overwhelming it can be sometimes to keep up with new members and
try to give them as much help and support as we can. We're all volunteers
here and our time is limited. We all care deeply though and that's what
counts. Your group and ours has alot in common. The isolation, the
frustrating searches for a diagnosis or just a doctor who will listen.
There is also no clear course for MSA and no two people ever have the same
set of symptoms. The bit of literature that there is out there on MSA is
often confusing and misleading particularly the ones that attempt to
predict the duration of the disorder. We know from experience from people
who've come through this list that it's possible to live over 20 years
with MSA yet newcomers often read 7 to 10 years and think there is no
hope. We know that staying on top of the symptoms, working with your
doctors, exercising and taking medications all contribute to quality of
life and can even extend life. Although there has been a US national MSA
support group for several years it has operated very informally. In the
past year or so, Don Summers has become president and is attempting to
give MSA a higher profile. Through this email support group we've been
able to connect people in the same local area with each other and now
there are some local MSA support groups forming. I'm sure CBGD patients
and caregivers would be most welcome to attend those meetings and to work
with MSA support group leaders as well. We're all in this together and
helping each other is what it's all about.
Hugs and best wishes,
Pam

Hi Connie,
Did your mother have MSA or PSP or do you know for sure? There was no autopsy
done on my mother-in-law, her official diagnosis through clinical observations
was Olivopontocerebellar atrophy (OPCA), apparently non-hereditary as far as
we know right now. Time will tell on that score as she has 3 siblings and 6
children. There are also many different hereditary forms of OPCA.
Non-hereditary or sporadic OPCA is considered one of the three forms of
Multiple System Atrophy along with Shy-Drager Syndrome and Striatonigral
Degeneration. The term Multiple System Atrophy is relatively new and not all
doctors may use this terminology when diagnosing. Many also don't realize
that the 3 disorders are now considered one disease based on pathological
evidence found in autopsies. The same irregularity in brain cells is seen in
all three disorders and is known as Glial Cytoplasmic Inclusions (GCIs) and
appear to involved in the cause of brain cell death in MSA patients.
Researchers now believe that the protein alpha-synuclein is somehow involved
in the formation of these GCIs. They theorize something similar is happening
with the protein called tau in Progressive Supranuclear Palsy and Corticobasal
Degeneration
With MSA the main symptoms may include:
1. Balance problems - if this is the main symptom OPCA is often given as a
diagnosis, also called MSA-C (cerebellar)
2. Orthostatic hypotension (low blood pressure when standing), bladder and
bowel incontinence, impotence in men - if these are the main symptoms,
Shy-Drager Syndrome is often given as a diagnosis, also called MSA-A
(autonomic)
3. Movement problems like slowness (bradykinesia), tremor or rigidity - if
these are the main symptoms, Striatonigral Degeneration is often given as a
diagnosis, also called MSA-P (parkinsonism).
Sleep disorders also are very common and include Sleep Apnea - loud snoring
and cessation of breathing during sleep for more than 10 seconds at a time and
REM Behavioural Disorder - thrashing and acting out of dreams. Thinking back
many caregivers say they noticed this acting out of dreams years prior to
diagnosis.
One of the things that frustrates many MSA patients and caregivers is that,
except for studies on new blood pressure medications, there are very few drug
studies that include MSA patients. Given that these two proteins, tau and
alpha-synuclein, seem to be involved in virtually all of the neurodegenerative
diseases including Alzheimer's and Parkinson's I'm hoping researchers will
incl