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Everyone beware.......
I just received the "Snow White" with attachment.
I quickly deleted it.
Jean

Hi All,

A question to think about.

What do they call a person in medical school who graduates with the lowest average in his class?

God Bless,

Jim Stark

at the Naval Academy, he is the anchor man ... I would assume he has a similar name and gets all the $$ that are bet on who gets the 'honor' .... lol

cheers

sheila

Thanks Jim, I appreciate the info.

take care, Kathy

Doug,
Haven't seen it in Chocolate. :o) have seen it in lite :o)
Take care,Bill and Charlotte
===========================

Diane,

There several medications on the market for this problem, including benadryl. As a last resort the Dr. can inject some of the salivary glands with Butox.

God Bless,

Jim Stark

I just finished a round of Bactrim, I know about the sunlight problem.
However Colace only worked for about 3 weeks, and my neurologist
doesn't want to prescribe anything he wants the internist to do that.
However my internist has admitted to me he has never treated any one
with this problem (MSA) and relays on me to help him by bring
research. He and I have learned together.
I was just wanting to know what has worked for others. Can women tell
me what has worked for them for bladder infection/control and not
caused vaginal yeast problems.
Celeste

I tried following your directions to Erika re: getting
info from the website. I can see "bookmarks", but I
can't click on it. At the top of the screen, it says
that I am a "pending member". What can I do to have
access to the info on the site?
Thanks!
Melanie

Bernice,
scopolamine is prescribed all the time for motion sickness such as sea
sickness. One must be careful of over use but I would not hesitate to try
it. It does have the side effect ( in this case benefit) of drying
secretions and it can be titrated to get the proper dosing.
God Bless,
Jim Stark

thanks Bill for the suggestion. we will try to Rediwhip. we tried
pudding though and it didn't work. thanks Bernice. it's comforting
to know that others have taken it for long periods. the info i got
off the internet was that complications sometime occur when taken
more than 6 months. How long did Ken take it? Gail thanks for your
understanding. I do have a struggle with our GP. He seems to want
to help (more than I can say for our urologist) but I have reason to
believe that he doesn't always know "all the facts". I requested
that he be given Furadantin(sP?) which does come in a liquid and we
were told by the doctors office that it is not the same...but proctor
and gamble that makes Macrobid suggested that perhaps we could take
that since the capsule was a problem...and even gave me the name of
the company that made it. Macrobid has shown to cause neuropathy, i
believe sometone wrote about that and my husband already has that
from his diabetes. and warns agains using it with renal problems as
well. thans for your input too Danielle. the literature i was
given with the prescription called it an anti-infective. and our
phamacist explained that they are not "natural" like antibiotics are.-
guess we will try to do our best to get them down and then watch real
close for side effects. thanks to everyone for the input from John

with chocolate)

Wrong!

Colace works fine for many people. Bactrim is a sulfa drug and causes an allergic reaction to sunlight in many people. Your doctor is a much better judge of what is best for you than any of us.

Take care, Bill and Charlotte

Hi All,
Mark has one med, Prilosec, that gives the same message on the med info sheet
because it is a time released medicine. When Mark got his PEG tube his
Pulmonary specialist suggested Pepcid AC because it could be crushed to put
in the PEG. It didn't work for Mark but his Internist said it would be OK to
open the capsule, divide the little beads inside in two doses and give them
to him one time in the AM and one time in the PM. So that's what we do, open
the capsule, divide the contents, crush them up and in the PEG they go. It's
work perfectly.
I would think that you could divide your dose the same way, pick up a pill
crusher at Walmart or somewhere, crush the dose up, mix it with a liquid and
give it to him by mouth. If it has a bad taste you could always get a
syringe and put in his mouth that way. I use a syringe for Mark's meds, just
dissolve the meds in water, fill the syringe and put the liquid in the PEG.
Just a thought! Take Care,
Judy Whittaker

Tommorow I see my managing Internist. I think you all agreed that
Miralax works better than Colace...right... and For Bladder infections
I should always have Bactrim close by... These are the two Rx's I need
to ask for is that right?

Erika,
If you'd like some information about MSA to share with local doctors you can
find some at our online website.

Tim:
I also would like you to e-mail me the same things your sending Kathy.
My mother, Mable need a lot of encouragement in enunciation and projection
of her voice.
Thanks, Mary Ann-

Hi! My name is Danielle. I used to sell pharmaceuticals (antibiotics in
particular). Macrobid is a antibiotic. Usually if they tell you not to chew
or break a pill or capsule there is a good reason. Generally it has to do
with its delivery system. However, barring allergies, there is no reason
your doctor cannot prescribe another antibiotic. He may be prescribing
macrobid out of habit ot because of insurance coverage or possibly even
thinking the infection may be caused by a beta-lactamase producing pathogen.
There are several other antibiotics which are just as effective- many even
more effective than macrobid. Also, many of them come in liquid or
suspension forms for children- this may be helpful because of the swallowing
difficulties. Now, the dosing may have to be significantly increased because
of the fact you using a children's med on an adult but I don't see why it
can't be done. Here are a couple of meds that I know are maketed to both
adults and children- Cedax (Schering-Plough), Zithromax (Pfizer)- Augmentin
(Smith-Kline Beecham).
Diahrea can be a side effect from these medications. The other symptoms you
mentioned don't sound typical but ask you doctor. Possibly it is reacting to
other meds being taken.
Hope this is helpful.

I think there was some discussion about this earlier that I didn't
get to read but I'm hoping someone might be able to help me.
John's doctor prescribed this two weeks ago after a UA showed a uti
of endococcus. It is a capsule, entirely to big for John to even
attempt to swallow. I called several phamacies as well as Proctor
and Gamble who makes it. the instruction label says "do not bit,
crush or chew"......so what are we suppose to do? the doctor will
not give anything else and even gave refills for 12 months because he
wants him to take them as a maintence measure. I have been opening
the capsule and trying to get the two little pellets down twice a day
for the past two weeks. he can't really swallow them so they end up
desolving in his mouth. I'm concerned that the "action" of the meds
might be completely messed up with this kind of consuption. the
literature on it that i obtained would scare anyone to death. I would
be interested in hearing anyone elses experience with this med. John
has had some recent symptoms that concern me. such as diahrea,
purple toes, thin blood ...wondering if these can be related?

Greetings Kathy!
You wondered "When you said no surgery for MSA patients, did you mean
surgery for anything or for breathing problems?"
Mostly it was about sleep apnea surgery. The trache tube is one of the very
few surgeries that work. Assumptions here: MSA cripples the autonomic
nervous system and hampers the complex action of breathing during sleep.
Obstruction can result from failure to open esophagus or vocal cords.
Surgery to 'open' the airway does not prevent the cause (failure of the
system to coordinate breathing). And obstruction results from vocal cord
paralysis, surgery in back of the throat is painful and pointless. Here a
trache tube makes a huge difference. Otherwise a CPAP or BiPAP machine is a
much better alternative.
Also, both Dave and Anne related similar problems with surgery. For MSA
patients it can be touchy. Anne noted an IV started before surgery to help
maintain body fluid (thus BP) helps. Also, if MSA dulls the breathing
process, anesthesia {correctly spelled, so no forgiveness needed! ;-} only
makes it worse.
At least that's what I've seen from participating in a sleep disorder
newsgroup, and from members here in this group.
IMPORTANT: A pointer for anyone with MSA that faces surgery... always
discuss the MSA and it's impact during surgery with the surgeon and the
anesthesiologist. Don't let them ride roughshod over you. Be certain they
know the far reaching impact it can have. Most do not know, and are
surprised to learn the potential consequences. Also, if you use a
CPAP/BiPAP unit, be some breathing assistance is scheduled and available
during the recovery. It is EXTREMELY important to do this. It might not be
needed, but it's better to be prepared.
Sorry for the preaching. Hope that helps.
Regards,
=jbf=
John B. Fisher

Diane --

My husband, Colo, had difficulty with drooling. After researching to find something which would not exacerbate the constipation problem, he was prescribed Benztropine in a low dosage (as I recall, 1/2 of a 1mg. tablet). That was enough to help him without drying up everything excessively. It also helped his tremor.

When we started hospice at home, he was given scopolomine patches to dry up secretions, but that was because he had lung congestion. He lived only a day after that, so I have no idea what longer term use might do.

-- Grace

Hi John,

When you said no surgery for MSA patients, did you mean surgery for anything or for breathing problems? When Dave was put to sleep for trach placement, the surgery went fine but when he was brought back to the room he quit breathing. A slient code was called and they worked with him a few minutes and he began breathing again. There was never an explanation for what happened except that maybe he was over sedated.

I just wondered if maybe there was a connection between MSA and anesthesia {forgive my spelling}.

Thanks, Kathy

Hi Everyone,

Just have a question to throw out to all of you. I was just asked by someone what can be done about problems with drooling? Would love to hear any advice or suggestions. Apparently speech therapy was unable to solve the problem. I know you are a wealth of information and support, so I'll wait to hear your suggestions. Thanks. Smiles and hugs, Diane

My name is Maria and was dx with MSA a year and a half ago. The right side of my body is rigid and, despite daily range of motion exercises, I get now pain in the arm and shoulder. I am under the impression that this can be improved with an anti-spasmodic like Baclofen. My neurologist suggested to give me an injection of Botox directly in the right arm. I was under the impression that Botox was the medicine of last resort...

I am right now on 1 Efforex (anti-depressant) and two Amantadine (testing....Sinemet did nothing for me).

I would appreciate your input on this because I trust the wisdom of experience. Thanks in advance.

Maria

Esersmom,
When I applied for SSDI, I was never asked if I was working. I was asked for
my yearly income with no mention of who my employer was. I think you can get
it.
I was approved on the first application!
God Bless,
Jim Stark

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February 7, 2001

Study Says Disabled Would Lose Benefits Under New Social Security Plan

By ROBERT PEAR

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Dear Erika,
I am sorry to hear about your Grandfather.
I am on this list because of a dear friend, and I don't know a lot about
SDS, but I do know of an excellent doctor in Sweden who might be able to
help you.
As you know, Sweden has one of the highest standards of medical care, and
after my friend was diagnosed, I was visiting Sweden and was told that Steg
Goran was the leading specialist in Parkinson's (so he knows about SDS, or
can tell you about someone who would be best qualified to treat that in your
area).
I called him & had a long talk with him.
He is in the Goteborg phone book.
I don't know where you live, but I think it would be worth it to call him
and discuss you Grandfather, and if you are not in that area, he probably
can suggest a good doctor for your grandfather in your area.
Also, he was very easy to talk to, and even though I was calling for a
friend, he told me what he would do if she were his patient, he sent me a
lot of literature, and told me what was possible to do, what things weren't
possible, what things were standard treatment, what things were under the
category of "experimental
treatments " that he wouldn't recommend, etc.
Sorry I am making this so long, but I think that since you are already in a
country that has the leading edge in medical breakthroughs, and Dr. Goran
is so approachable, that if you call him, maybe he can either see your
grandfather or tell you where to go that is convenient to find the best
care.
It is the kind of disease that needs a lot of management and changes, trying
new drugs at different doses to see what will work for the individual, so it
is best to have a doctor who is easy to work with, besides being tops in the
field, and convenient for your grandfather.
Best wishes to you and your grandfather, and even if he is receiving his
treatment in Sweden, this is a wonderful group with a lot of knowledgeable
people, people who can give you a lot of support and information.
Hugs, Jennifer

Glad to know there is at least one more chocolate fiend besides me!!!

Can someone still get SSDI even if they are already retired? Even if it was
a forced retirement due to this illness? My mom was a teacher, so she paid
into her own social security type thing, not the real social security. Will
they still accept her? It's worth a try anyway I think.

Interesting...never thought of donating a healthy
brain, but it makes sense.
Melanie in OK

Speaking of medicines, here's one we all enjoy!
The Rules of Chocolate
If you've got melted chocolate all over your hands, you're
eating it too slowly.
Chocolate covered raisins, cherries, orange slices and
strawberries all count as fruit, so eat as many as you want.
The problem: How to get 2 pounds of chocolate home from the
store in hot car.
The solution: Eat it in the parking lot.
Diet tip: Eat a chocolate bar before each meal. It'll take
the edge off your appetite and you'll eat less.
A nice box of chocolates can provide your total daily
intake of calories in one place. Isn't that handy?
If you can't eat all your chocolate, it will keep in the
freezer.
But if you can't eat all your chocolate, what's wrong with
you?
If calories are an issue, store your chocolate on top of the
fridge. Calories are afraid of heights, and they will jump out of the
chocolate to protect themselves.
If I eat equal amounts of dark chocolate and white
chocolate, is that a balanced diet? Don't they actually counteract
each other?
Money talks. Chocolate sings.
Chocolate has many preservatives. Preservatives make you
look younger.
Q. Why is there no such organization as Chocoholics
Anonymous?
A. Because no one wants to quit.
If not for chocolate, there would be no need for control
top pantyhose. An entire garment industry would be devastated.
Put "eat chocolate" at the top of your list of things to do
today. That way, at least you'll get one thing done

Hi all,
I just got a disability (special needs) catalog from J.C. Penny's in the mail
and it
has a nice option for bathing in bed. It is a blow-up bathtub. You use the
flat
sheetmethod to get it ubder the patient and situate them. Then you blow-up
(inflate)
the bathtub around the patient with a vacuum (I think it comes with the tub).
It is
expensive $320 plus shipping. It also has a three video tape collection called
the
educated caregive for $50 which looks good (wish I had seen it about 5 years ago
:o)
Take care, Bill and Charlotte
kaymac55@... wrote:

sorry if this is a duplicate. i sent to emails to the group and only one
showed up in my mailbox.......these are helpful caregiving hints from another
group i belong to.

i thought you all might find some of these hints to be useful. fyi, the
Advocate is a monthly newsletter that i get. i'm pretty sure it's free of
charge. as you all might be realizing, a caregiver's job is the same no
matter what the disease, however, PSP and MSA are remarkably similar and, in
fact, have often been misdiagnosed as one or the other.

the original list of hints had omitted this.....

Kathy,

The Medicare rules aren't quite that straight forward. They only allow physical or speech therapy as long as you improve. If your doctor decides in a few months that therapy may do the patient some good again, the doctor can order it again and your patient can have it again as long as they continue to improve. We usually get it 2-3 times a year for about 4 weeks.

Take care, Bill and Charlotte

Hi, Erika. Welcome, though sorry you are here. I am sorry about your
grandfather having this disease, but you are at the right place.
What medications exactly is your grandfather taking? If he is taking Sinemet
for stiffness, it has been known to cause hallucinations.
Sleep problems are very common with this disease. My mother Joyce, who was
71 and just died in November, had terrible difficulty not so much falling
asleep, but getting back to sleep when she got up throughout the night. I
think the antidepressant Zoloft helped her to sleep.
Also, sleep apnea is a symptoms of this disease and your grandfather should
probably get checked for that. It could be that he is not getting proper
sleep (also, this problem can be dangerous if untreated).
Is there any way to get your grandfather to a neurologist (preferably a
movement disorder specialist) just for a consult -- someone who, if too far
to travel to on a regular basis, could consult with a doctor nearby?
Others will send you Web sites to go to -- I don't have them. Good luck,
Debbie

Hi, my name is Erika and I'm from Sweden. And I need some BIG help!!
My grandfather (72 years old) was diagnozed with the Shy-Dragers syndrome 2
years ago, he's been in and out from the hospital several times. And the
doctors don't know what to do to help him. He's on 3 diffrent medications,
one for the heart, one for the blood preassure and one for not being stiff
in his body. But for about 4 weeks ago he started to hallucinate and got
sleeping problems.
I've tried to get some help here in Sweden but the doctors just say: -It's a
unusual illness, we don't know what to do!!
And that's getting on my nervs now. So I wonder if you guys can help me
out!? Please send me some information about the SDS.
Please, please, please HELP ME!!!!!!!
Yours
Erika

Thanks Tim, I would really appreciate it. This is the last week Dave will get pt. from home health, I am learning how to do the exercises with him. I don't understand why the government can't understand how important physical theray is for him. They won't allow any more visits

Thanks, Kathy

Kathy,

I'll email you somethings you can try at home. I have an excellent speech therapist who works not only on my swallowing and speech but also on my memory. They are often simple exercises to strengthen either the vocal cords or the process of swallowing. I'll scan them and email them to you

Tim

http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group

Thanks Diane,
While we're sharing, here's a site that cross references most of the
medical articles that are in print.
http://www.ncbi.nlm.nih.gov/PubMed/
Type Multiple System Atrophy and press GO
Most recent articles appear at the top.
Have fun!
Pam

Just a note that whenever you write to a politician it is a big help
to include a handwritten note stressing your main points. Especially
if you are writing to support or oppose a specific bill--specify
the bill and write 'vote yes' (or no) plainly.
One person can send massive amounts of email, printed letters can
be mass produced too. But it takes time for an individual to write
out a letter by hand.
When working on lobbying campaigns I've been told that a Senator
or Congressman will count a single handwritten letter as worth
ten printed letters when gauging the views of his constituents.
Doug in Greenbelt, MD USA

Four years ago today my mother Joyce (forever 71, died 11/00) called me to
say her doctor told her she had Parkinson's. In memory, I sent my
customization of Bill's letter to my senators.
Four years ago today was also my first step into this terrible, terrible
world of PD and PD + diseases. I will never forget. Debbie

I have found some interesting MSA articles at www.aan.com
Click on neurology journal and type in Multiple Systems Atrophy.
Just wanted to share with everyone.

What all these illnesses have in common with each other, and also
with Parkinson's and to a lesser extend even with Alzheimer's and
diffuse Lewy Body Disease and others is the loss of neurons from
the central nervous system.
So treatment usually involves compensating for the functional losses
that result.
What distinguishes these from each other is the specific type of
neuron that is affected and the specific nature of the damage.
The specific diagnosis is important for research into the causes
and for some of the approaches taken for looking for a cure. But
for treatment, it does not make a lot of difference which illness
has caused the loss of the neurons, only how many and where in the
brain.
In Parkinson's and Alzheimer's the damage is similar at the
microscopic level but the part of the brain that is affected is
different making it easy to distinguish between the two. Parkinson's,
MSA, PSP, and others can affect the same part of the brain making
it easier to confuse them even though at the microscopic level the
damage is different.
I suppose (and this is just layman's speculation) that these could
be diagnosed by biopsy, but it doesn't make any sense to biopsy a
person's brain if there is no expectation that the findings can
influence the treatment options.

A guy named Bob receives an unexpected free ticket to the Superbowl from
his company. Unfortunately, when Bob arrives at the stadium he realizes the
seat is in the last row in the back corner of the stadium -- he's closer to
the Goodyear Blimp than the field.
About halfway through the first quarter, Bob notices an empty seat 10 rows
off the field -- right on the 50 yard line- He decides to take a chance
and makes his way through the stadium and around the security guards to the
empty seat. As he sits down, he asks the gentleman sitting next to him,
Excuse me, is anyone sitting here? The man says No.
Now, very excited to be in such a great seat for the game, Bob again
inquires of the man next to him, This is incredible Who in their right mind
would have a seat like this at the Superbowl and not use it?
The man replies, Well, actually, the seat belongs to me, I was supposed
to come with my wife, but she passed away. This is the first Superbowl we
haven't been together since we got married in 1967.
Well, that's really sad, says Bob, I am very sorry about your loss.
-But still, couldn't you find someone to take the seat? Maybe a relative
or even a close friend?
-No, the man replies, they're all at the funeral.

steve, when my husband applied for ssdi, we were told the horror stories
about how everyone gets turned down that first time, blah blah blah. to our
very pleasant surprise, we filed, and our benefits began six months from the
date he left his job. i think with a disease such as MSA, or OPCA, there is
very little that SS can do other than to accept it. i do hope you have the
same smooth ride. and i do hope that the portion your doctor/neuro had to
fill out is explicit in that MSA is a progressively disabling disease and
therefore no job can or should be performed by one with balance, vision, etc.
problems. good luck.

Hi
I am applying for disability this afternoon (2:30pm, EST), any last
minute words of advice?
Thanks
Steve Crawford

Hi Tim,

speech and swallowing therapy is what I was refering to. Thanks for any infor you can give me. I would like to know how hard it is from the pt's point of view so I can help Dave cope better with the different types of therapy.

Thanks Kathy

Pam,
Correction to my phone
Bill Werre
bwerre@...
703-471-7215
Herndon VA
(Washington DC area)
You got my house number in my phone number :o)
Take care, Bill and Charlotte

Bernice, I read Ken's story with great sorrow and respect for the two of
you. So many similarities to my mother Joyce (71, died 11/00). From your
stories and others I see that my mother's life could have gotten so much
worse (it's hard to imagine, but it's true). Even though I am glad my mom
didn't endure more than she already had, I feel cheated hearing about others
who still have their loved ones through the true end stages of this disease.
I remember thinking, both about my mom and my dog when they were so sick but
still around, how lucky I was to have them right now. There is no winning.
Debbie
-

These two PSP Groups welcome members with MSA:
Karen Kennemer
281-358-2282
KMK1224@...
Kingswood TX
(Houston TX area)
Bernice Bowers
614-833-2588
bernice.bowers@...
Canal Winchester OH
(Columbus OH area)
This Parkinson's Group welcomes members with MSA:
Colorado Parkinson Plus Support Group
Englewood, CO
Sponsored by:
Parkinson's Association of the Rockies
phone:(303) 830-1839
Fax: (303) 830-2577
email: parrockies@...
website: http://www.parkinsoncolorado.org
These Ataxia Support Groups welcome members with MSA:
http://www.ataxia.org/groups.html

If you're interested in joining or leading a support group in your area
please write me. I have a database of nearly 1000 people and can help
connect you with people from your area.
Regards,
Pam
pbower@...
----
Contact these individuals if you are interested in joining their group:
Charmayne Bischel
charmayne@...
503-698-4452
Portland OR
Gary Huddleston
garyjoyc@...
317-327-4970
Indianapolis IN
Harriet Gossman
Harriettlpn2@...
812-288-7532
Jeffersonville IN
(Louisville, KY area)
Judy Biedenharn
Jhbiedenha@...
614-875-5531 3954
Grove City OH
(Columbus OH area)
Judy Miller
B1952miller@...
502-253-9379
Louisville KY
Bill Werre
bwerre@...
703-471-7215 1308
Herndon VA
(Washington DC area)
Carol Langer
cblanger@...
781-862-5435 21
Lexington MA
(Boston MA area)
Diane Rydrych
diane.rydrych@...
Minneapolis MN
Judy Mears
mears54@...
503-581-8941
Salem OR
Christine Latham
crlatham@...
Madison TN
(Nashville TN area)
Amy Beckman
amybeckmann@...
901-452-7443
Memphis TN
Sophia Dohm
erd5@...
415-897-8993 10
Novato CA
(San Franscisco area)
These people are looking for enough interest to start meeting regularly.
Contact them if you're interesting in joining and/or helping to organize a
first meeting.
Aida Ortiz Ruiz
ruizoa@...
New York NY
Wanda Paulin
pwanda98@...
319-872-3650
Bellevue IA
Diane Maxwell
dmax295@...
323-295-2457
Los Angeles CA
Elaine Coney
econey@...
Magnolia MS
Debbie Thomas
D3E3B3@...
Chicago IL
Sam Convissor
convisor@...
973-762-1140
Orange NJ
Tom Burt
Turboom@...
770-422-7435
Kennesaw GA
(Atlanta GA area)
Perry Sennewald
perrys@...
804-244-0018
Charlottesville VA

Yes Pam, and others, I would be happy to share Ken's story with you. This
may be a little long
We first noticed what we recognized as symptoms about 1988 in that he
complained when he got up out of a chair he felt he was going to keep going
forward. I told him he probably got up too fast.
Shortly thereafter he complained of a frequent slight tremor in his leg and
arm. time to check it.
After visit to HMO GP he was told it was Parkinson's. Asked for a
neurologist referral, who was very curt, - stated it was slight case of
Parkinson's but not bad enough to medicate. He stated Meds were worse than
the symptoms. We requested another opinion, which HMO would not approve.
So took him to another neurologist on my own. He also stated it was
Parkinson's and put him on Sinemet. We noticed no cessation in the
progression of his disease, in fact it seemed to be progressing very
rapidly. They kept upping the dose of meds and trying enhancers, but the
progression continued. He began falling, freezing steps, stuttering steps,
dragging foot. All sorts of mobility problems. Voice became very soft,
hand writing illegible and almost impossible after a while. Impotence, and
incontinence followed. After falls in which he broke his hip and needed a
total hip replacement, and six months later shattered femur on same leg, he
was never able to walk again unaided. Went into wheel chair in 1993. I
took him to Barrows Neurological Center in Phoenix when they were doing
Parkinson's drug trials, and he was turned down the first day of trial,
saying he did not have Parkinson's. They did MRI, PET, and some other
tests, and knew something was wrong, but couldn't make exact diagnosis.
Later examined at Loma Linda U in CA and they suggested it was either PSP,
or MSA. Difficulty eating, & ability to cover his mouth when coughing or
sneezing disappeared which made it very difficult to take him out. Never
knew when he would sneeze all over someone. His condition was worsening so
rapidly, I needed to move to Ohio, where I had some family, as he was no
longer able to travel. Bought a van equipped with ramp and drove him from
Calif to Ohio in his wheelchair, as he was unable to get on a plane. No
fun! Getting him in and out of hotels, motels, restaurants for 5 days, but
I made it. He was examined at Ohio State U and diagnosed as having PSP from
a specialist in that field. Taken off all meds. Ken never complained much
of pain, even when he had falls. Lost all ability to speak. Could no
longer focus eyes to read or watch TV, and became very light sensitive. Had
to keep room dark. Developed Aspiration pneumonia from silent aspiration.
At that time feeding him took me about 2 hours each meal. He began losing
weight. Lost 50 pounds before the bout with pneumonia, and they then
inserted a peg tube. He never ate again. Received all food, water and meds
by peg tube. He became very rigid. Since 1995, I had to use a Hoyer lift
to transfer him from bed to wheelchair, where he would sit the biggest part
of the day. We went through all different types of Physical Therapy early
on and again later. Also speech therapy, all helped minimally and
temporarily. Nothing lasted.His head was thrust back and he could not move
it down. He could not open his eyes without my help and then could only
hold them open a short time. He slept a lot during the day in his
wheelchair. he never complained. He did gain his weight back on the peg
tube, but had to have an indwelling catheter, and had horrific bowel
problems. By the time of his death in 2000, he was totally rigid, unable to
move even his fingers or blink his eyes.But mind still appeared to be
intact. He knew everyone, it was obvious, and attempted to let you know he
understood by a slight squeeze of hand or blink when he was able. We talked
to him a lot, read to him, played music for him. etc. I was his sole
caregiver and rarely left the house for the last 5 years of his life. He
had many UTI's, erratic temperature changes, and spikes. Seemed to develop
seizures about the last 3 years of his life. Had them very often. Each
time he would cough or choke. Had a lot of mucous., and choking and needed
frequent suctioning (many times a day) for several years.
Strong heart, good blood pressure, no apparent other health problems. He
never smoked, was a firefighter for 30 years, drank only socially, worked
out and was a strong athletic man before this disease. In retrospect, we
have wondered if a severe bout of depression and stress which he went
through in 1981, was connected with this disease or just a mere coincidence.
That was the cause of his retirement from the fire department when he was in
early 50's. Sorry this was so long, but kept remembering symptoms. If it
will help anyone identify anything, I am happy to repeat it. As we looked
back over the years, we remembered several tell tale signs that seemed to
lead up to this before the first symptoms he complained of, like his
stumbling in our square dances and ballroom dancing, falling behind,walking
with me. At the time we didn't connect all this.
Bernice /spouse and caregiver to Ken 73 at death 06/23/00

Thanks, Bill. I'll send a letter tomorrow. I forwarded
this email to my sisters and best friend. They'll send
letters, too.
Melanie in OK

Hi all,
Several of you have asked about a letter to their Congressmen or Senators.
Below is a copy of the email I just sent Senator Warner. You should edit it to
fit your situation and family, if you want to copy it. Be sure to add your name
and address.
To find your Senator's email go to :
http://www.senate.gov/
Take care, Bill and Charlotte
Dear Senator,
My wife has an incurable brain disorder called Multiple Systems Atrophy. Since
1990 when she was first aware of the problems she has deteriorated to the point
where she is barely able to feed herself, she can not walk or even stand. She
has had a feeding tube since 1998 and gets most of her liquids and medicine
through the tube.
This brain disorder is related to Parkinson's Disease, and we were very happy to
hear last year that people at NIH had isolated and grown dopamine producing
neurons from the stem stems in discarded in vitro fertilization experiments.
This use of the cells which were condemned to death (destruction) when the woman
who donated them decided not to attempt to have any more children is Pro-Life
for people like my wife. In fact, opponents describe it as "killing life" but
the cells are not "killed" and will hopefully live on in people like my wife,
giving them life or at least quality of life.
If the research is so bad, why do the opponents who claim to be "morally right"
have to lie about the research? They claim scientists will be growing body
parts, when in fact they are growing tiny cells so small they can not be seen.
These cells would then be transplanted into the body or brain much like blood
cells in a transfusion. We do not yet know if they will work in humans, but
they have cured mice of Parkinson's like brain disorders. We also know that
adult stem cells have NEVER grown into dopamine producing neurons which are the
cells needed to replace dead cells in Parkinson's patients. Yet opponents lie
and claim adult stem cells "show great promise" in the cure of Parkinson's
Disease. In fact, only pluripotent stem cells have been grown into dopamine
producing stem cells.
The cost of taking care of late stage Parkinson's, MSA, PSP and all the other
Parkinson's Plus disorders is horrendous. With over 1.5 million people with
these disorders in the USA, fiscally it makes sense to try to cure these
disorders.
Senator Specter along with others recognize this problem and support this
research. If NIH does not do the research and others find a cure, our insurance
will not cover the cure, as it will be considered experimental in the USA. My
wife, children and grandchildren hope that you will support this important
research at NIH also.

I'm not sure if someone posted this recent research. Just in case,
here it is.

Bernice,
Was Ken diagnosed as MSA or PSP before his death?
Take care, Bill and Charlotte

Kathy,
I'm sure you ARE doing everything you can. As far as exercises go, you can
only encourage and give help if it's accepted. If he refuses, that's his
choice, and you just have to remember you've done everything YOU could.
Rose

This is the summation of the pathology report on my husband Ken's cranial
autopsy. I can send the entire report to anyone interested, but it summed
up to this. The report is quite clinical and is not very clear to me, but
some of you may be able to understand it and be interested. Bernice
NEUROPATHOLOGY DIAGNOSES:
1. MULTIPLE SYSTEM ATROPHY (STRIATONIGRAL & OLIVOPONTOCEREBELLAR
DEGENERATION)
2. SENILE CHANGES OF THE ALZHEIMER TYPE, MINIMAL (BRAAK STAGE II)
COMMENT:
The findings are typical of multiple system atrophy (MSA), which was
formerly known as Shy-Drager syndrome. Particularly noteworthy in this case
is the presence of many glial cytoplasmic inclusions (GCI), which have
become recognized as the histopathological hallmark of this condition.
There were also a few neuronal inclusions that were positive for synuclein.
This case illustrates the usefulness of immunostaining with *-synuclein in
demonstrating the widespread distribution of GCI, even in areas, such as the
motor cortex with only subtle pathology on routine stains. The fundamental
abnormality in MSA is unknown, but morphological and biochemical alterations
in synuclein strongly implicate this protein in the disease process.
MSA is the most common misdiagnosis for clinically consistent progressive
supranuclear palsy (PSP) in the Society for PSP brain bank.
Reference:
Dickson DW, Liu W-K, Hardy J, Farrer M, Mehta N, Uitti R, Mark M, Zimmerman
T, Golbe L, Sage J, Sima A, D'Amato C, Albin R, Gilman S, Yen S-H.
Widespread alterations of alpha-synuclein in multiple system atrophy. Am J
Pathol 155:1241-1251, 1999.

Melanie,
this bring s back memeries. I used to do bees with a close family friend.
They had the extractor and every thing that goes with it. We used the
BEE-GOO. And I had my fair share of bee bites. they had bees all over the
place.
It was fun. you can learn alot from bees. Makes great honey-butter
sandwiches.
I did have some good times as a child.
prayers be with you,
Liz (from El Centro)

I am sending it to you. Just right click it, click save image, and put it in your files. Remember where you put it, Then when you send a note, go to Insert at the top of your mail letter and go to the file where it is. click and Open
then apply. [INLINE]

Barb,
When I was at my parents' over the weekend, I was
looking through the beekeeping supply catalog my dad
has. I saw a lot of candle making supplies and thought
it would be fun to make beeswax candles with the boys.
Daddy is going to save some beeswax for me so we can
try that.
I didn't know you could use honey on cuts, etc. I know
that a lot of people with hay fever type allergies buy
our local honey because they think it helps with their
allergies.
Melanie in OK

Melanie I was reading your note.

My son, Ron, has bees in N.C.. They are on the campus at John Wesley College. He uses them with his students biology class. He got his first hives when he lived in Chicago, I remember watching him stomp the aggressive ones. They were fun to watch as they left in the morning and returned at night. Like you say, they are very interesting, but you sure do not want the aggressive ones in the hives.

He sends me containers of honey every year. They also make the beeswax candles just for fun. Lots of work but rewarding in the craft man ship of putting them together. Do you know there are medical uses for honey? Good on the skin for dryness and cuts.

Have a lovely day.

Barb in Arlington. Texas

[INLINE] Some sunshine for you.

I would love to know how you do the chicken. I loved it.
Marilyn in TN

What a treat that your dad is able to pass his skills on to other
generations. Tell him congratulations. Your son should be honored.
Marilyn in TN

Vera,
You have a difficult situation on your hands. It must
be so hard not to have much support at home. What is
your husband's condition right now? It sounds like
he's getting around ok if he can still fish. What
other problems does he have right now? When was his dx
changed from PD? My father was dx with PD in 99 and
re-diagnosed with MSA a couple of weeks ago.
My father is 68. Yes, he still has honey bees. My
husband has to help him with them quite a bit now.
It's a labor intensive hobby...lots of lifting, etc.
He (my father) enjoys going to beekeeping meetings
still. He has about 5 hives. My husband goes over and
helps him when it's time to rob the bees, then my
mother and I bottle it and my sister, husband and two
of my boys sell it at the Farmer's Market. It's a very
small and not too profitable operation, but we all
enjoy it. My dad bought my oldest son (8 y/o) a bee
suit for Christmas this year so he can help work the
bees. He helped for the first time about a week ago
and loved it. It's a good thing for him to do with his
grandaddy. :-) I just wish Daddy could get around
better so he could do more of that with the boys. He
has a hard time walking more than a few feet these
days. We make the best of what he can do, though.
A bee swarm is a really amazing thing to see. In fact,
bees in general are amazing. Did you know that they
are the most studied insect? I am fascinated by them.
Hugs,
Melanie in OK

HOORAY for you.
Barb in Arlington

[INLINE]

Maryann,
Sinemet is actually the least powerful of the PD meds as far as causing
orthostatic hypotension. The dopamine agonists have the same effects. They do
make a weaker form of Sinemet (10/100) and they also make a 25/100 CR which acts
slowly in the system. The big question is, did the Sinemet get rid of her
rigidity when she was taking it? If so, then they can give you Florinef or
Proamantine to raise the BP.
Take care, Bill and Charlotte

Annette,
If you are the only one that uses your computer, you can check the box that asks
if you want the computer to remember th epassword and user name. That way all
you have to do is sign in and it types the other stuff. Egroups did not require
you to sign it if you had checked that box. They automatically recognised you
Take care, Bill and Charlotte
=======================

BY GEORGE I THINK I'VE GOT IT !...DIDN'T REALIZE THAT YOU HAVE TO
SIGN IN EVERYTIME. ---

get set up

I can't believe it, i just tried to get into the messages and it doesn't
recognize me again. I've spent alot of three days now trying to get set up

Hi all:
Mable has had difficulty in the past trying sinemet. Making her faint and
passing out for a period of 3 hours. What are some of the ridigety
relieving meds that can be used if Sinemet is to powerful for her. Mom is
very sensitive to all medication.
Mary Ann-

Pam, My mother started Rilutek when she was rediagnosd with SND 9/98. The
doctor giving it to her is Dr. Fazzini (he has a Web site at
http://parkinsons-botulinum.com/). In a phone conversation I had with him,
he said that it was hoped that it would slow the progress and he mentioned
if my mom was headed for a wheelchair in 3 years, this might put it off a
few years. As it turns out, my mom could have gotten it for free if she
would have gone into the city as been a formal part of a study. But the trip
was too much and she opted to pay for it herself. Eventually, within a few
months, she gave it up. I remember corresponding with Fazzini by email,
which you can get from the URL.
Hope this helps someone, Debbie
Hi Debbie,
Interesting that your mom took Rilutek.. it's also called Riluzole which is
the drug they are doing a trial on in the UK. So apparently you can already
get it in the US.. I don't know what the purpose of the study in the UK
is... they may be trying to work out what the appropriate dosage is.
Hugs,
Pam

Melanie;
I really think Mother needs a massage daily, but I can only assist her 3
times a week. After getting her mostly dressed and she is sitting in the
wheelchair, I have her put her arms on her lap. I then massage her back and
top of her buttocks. I pull her arm back to get a little definition of her
shoulder blade and work that area. She is always tight in the neck area. I
work the oils up into the hair line at the base of her neck. Sometimes I
give her a scalp and face massage. There are pressure points to open up the
sinuses. I taught myself, by getting books from the library and practice.
Yes get a professional massage and watch him/her and if you have good strong
hands, do what he does. I have my doubts a bad massage will hurt anyone. The
more you do it the better you get. I now can feel where Mother is tight and
can feel where it loosen up. If you want to start out by yourself. Try using
some olive oil, the same you cook with. That is good for the skin. It's good
for your hands as well and your hands will get stronger! Some people like a
massage soft, not Mother or me. I get way down deep into the muscle. Mother
knows that if it is sore now it will be better after it gets worked out.
Also, every therapist is not as good as the next... you may have to check
out several. Mother feels like a new woman after our morning together. She
says she is not sure if it the pool, or the massage. I think it is both, and
the scrub in the shower is very vigorous. There have been days I couldn't
take her to the pool and later came in and gave her a massage and she felt
wonderful afterwards. Do what you can it all helps...
Mary Ann-

Hi Debbie,
Interesting that your mom took Rilutek.. it's also called Riluzole which is
the drug they are doing a trial on in the UK. So apparently you can already
get it in the US.. I don't know what the purpose of the study in the UK
is... they may be trying to work out what the appropriate dosage is.
Hugs,
Pam

Hi Bill,
We just tried the chat access...notice said ..."Sorry, your browser
doesn't support the chat applet. Make sure Java is enabled.
So will figure out what that all means.
We are going to try to make a movie in about 30 min...so will come
back to this and try later.
We have not written back on line for many months now, although we have
tried to read when we can. Will see if this answer goes back on the
list.
Hope many were on the chat. We look forward to making that work.
Will go back and check instructions from Pam.
Mary and David Hanson

Melanie,
Studies on massage have shown that it helps with relaxation, but without
exercise it does nothing to really help movement. It does allow more
flexibility for a finite period of time (hours at most). Coupled with exercise,
it would be good. It can also help with pain associated with tension or stress.
All the other claims are completely unproven scientifically. P.S. Some of the
claims of certain oils helping are suspect at best. Certain oils mentioned in
massage therapy books can actually raise BP and heartbeat. While raising the
BP could be good for a MSA patient, raising the heartbeat is NOT good - many
have a high heartbeat to begin with.
Remember that scientific studies involve exact treatments with precise controls
on many people with a disease or disorder and the same treatment on "control"
people without the disease (usually blood relatives of the patients). This
allows you to determine side effects and the precise odds that it will help so
many patients out of a 100. Even when I say that 40-45% of MSA patients are
helped by Sinemet - it is only a guess based on some I have read, it is not
scientific data and may only apply to this group at a specific time. It is NOT
based on a scientific study of only MSA patients with strict controls.
Try to find studies on any treatment you decide to try. NIH has done studies on
things like massage, acupuncture and many "alternative medicine" treatments.
Aspirin is a clear benefit from the old "medicine man" days and shows there can
be some benefits to looking at these methods. BUT we are finding that we should
even use aspirin with care.
Don't look for subjective analysis of treatments. Joe Blow's Acupuncture Shop
and gym is not the same as NIH or medical journals. Websites can lie and give
false or misleading info (and DO). If it sounds too good to be true, it is
usually a lie. There is no miraculous cure for MSA, anymore than you can buy a
good used car for $50.
Take care, Bill and Charlotte

Greetings Pam!
Your friend reported one of the doctors noting:
I also heard it is involved in the process of recalling specific words.
Also along the visio-spatial function, this is also the process of
understanding where you are in space. Anyone remember having a bit too much
to drink. Note how you tend to grope for door knobs and such. Same thing
occurs with the OPCA form of this.
Regards,
=jbf=
John B. Fisher

Maryann,
When any of you go to see her in the nursing home, you can help her with the
speech exercises. Aides can often help her with the PT, but will rarely do the
speech exercises with her. You can print out the exercise program that Rose
describes at:

Barbara,
I cried as I read your story. As you know, I am new to
this group and hadn't heard it before.
Your Ken sounds a lot like my father. My daddy is even
a (highly respected) judge, too! He is still working a
couple of days a week and really hopes to be able to
continue to work until October, which will be the 20th
anniversary of his appointment to the federal bench.
One of the hardest parts for him of dealing with this
disease is having people who knew him as a strong,
successful person seeing him like he is now. He thinks
he looks worse than he really is, and he's embarrassed
about that. His close friends and former law partners
have been so good about taking him to lunch and having
parties, which I know are just for him, but they don't
tell him that.
We always travelled in a motor home or some other kind
of RV when I was a little girl. Those are great
memories for all of us. Just after he was dx with
Parkinson's, my parents bought another travel trailer
because my dad wanted to do some camping with my boys
"while he still could". My husband, children and
father have taken a couple of weekend trips. Now that
he is getting so bad, I don't know how much they'll be
able to do, but he's planning a spring trip already.
:-)
Anyway, thanks for sharing your story. I pray for
peace for you and Ken.
Melanie in OK

Funny you should mention the prism glasses. My dad was
just telling me yesterday that his opthamologist is
going to fit him with prism glasses to help with his
vision. Apparently, they will "raise" his vision since
he can't hold his head up. It will make it easier for
him to see what's in front of him.
Melanie in OK

from Barb Pond in VA
Had a sleep study done fall 2000. Have suspected I had apnea for many years,
long before symptoms of MSA were manifested. Study revealed I had severe
obstructive apnea. This is the more common type of sleep apnea many people
suffer. The type to be really concerned about is central apnea which
emanates from the brain and can cause sudden death. Either type should be
attended to by a sleep specialist.
After much trial and error, the correct combination of mask, machine, and
speed of air compression was arrived upon. I have now been using the CPAP
for over a month every night. Although I cannot tolerate it but between 5-6
hours a night, my medic says I am getting 80% benefit and that is good. On
my visit last week, my b/p was lower than usual (126/70) and I could report a
difference in the way I feel during the day. Not quite as wiped out and
dopey-sleepy every time I sit down. My energy level I would say is a bit
higher. Where these changes are not of drastic proportions, it is enough
that I am a little more upbeat about the way I feel overall. This type of
apnea is not caused by the MSA, but it certainly did affect my overall
physical condition. I should have had this checked out years ago as I (and
my medic agrees based on my history) I've probably had obstructive apnea all
my adult life. If the 'cure" can have some affect on me in this sorry
condition I'm in now, think what it would have done if I had taken care of it
when I was in much better health. Not implying that it would have prevented
MSA, but may have helped me slow down the symptoms somewhat. Who knows?
But what I am saying is, if you are advised to have a sleep study done, by
all means do it. It is a nuisance and bother to sleep in a strange place with
all those wires attached and to learn to sleep every night with a strange
contraption on your face, but if the end result is beneficial,.....well, I
can only speak for myself.
Barb Pond in VA

My mother Joyce never had massages, but she had an osteopath do
manipulations. I sat in on a session and it was rough! But my mom felt
better afterward (unfortunately, the benefits were always short lived -- a
few hours).
My mom never tried Baclofen (wish she had). But she was on Artane. The
Artane had an initial benefit of making her feel more balanced. When she
changed doctors, they voiced their concern over the Artane use (she was 69
or 70 at the time). According to these doctors, Artane is not good for older
people -- causes mental problems. And I have to say, my mother had some
mental lapses and hallucinations that disappeared once she was weaned from
the Artane. Also, she felt no worse being off it.
Please remember that this is her individual reaction to the meds. But I do
remember her most recent MDSs not wanting the Artane to be part of her mix
of drugs, Debbie

Jerrie (and others),
My mother Joyce, with SND, tried or took Sinemet, Tasmar, Requip, Artane,
and Rilutek. The latter was used experimentally. She stopped it because she
saw no improvement and it was mucho expensive. Rilutek is a drug used for
ALS, but her doctor at the time (Fazzini from NY) was using it to treat MSA.
He believed it could slow down the process. Don't know whether you and
others want to look into this. Debbie

Hi Mary Ann,
I read your response to Catherine re: massage for your
mom. I'm really interested in that. My father is
*very* stiff, some days worse than others. He has
always "pooh-poohed" massage therapy, but now that he
is so bad off, I think he's willing to try anything.
Do you think it would be worthwhile to have a
professional massage weekly? My feeling is that it
can't hurt. Does your mom have better range of
movement after having one?
Also, has she tried any meds like Baclofen or Artane?
Do they help with stiffness. I am overwhelmed with
information. Forgive me if this has already been
discussed. :-)
Melanie in OK

Hi Mary Ann,
I'd suggest having someone in the family directly speak with the speech
therapist themselves (by phone if not able to in person) to find out the
specific results of the evaluation and what treatments are recommended.
Speech therapy can continue for short periods in a nursing home, but you're
right, the aides usu. don't have enough time (they're spread between too
many patients) to follow through with all the recommendations the way they
should. This is where family and friends can help intervene and provide as
much of the follow through with the recommendations (and to encourage the
aides to do some) as possible. I think the aides/nurses respond much better
to going that extra mile when they see family doing as much as they can too.
Just my two cents,
Rose

My husband Ken was never able to derive any benefits from Sinemet. In fact,
we were told later that it helped very few PSP patients and very possibly
caused a accelerated decline in their condition. This was not a scientific
analysis, just a supposition, but many PSP patients complained of the same
thing.
Bernice

Hi all;
Mom has another doctor appointment Monday the 5th. A cancellation moved it
up by 2 weeks. We are hoping Dr. Zwibel (from the Parkinsons Insitute in
Mpls, MN) will start her on Sinemet to help lessen her ridigety. I am
concerned because she has tried it twice before and passed out or got very
faint. She has been on proamatine, to stabilize her blood pressure, for
several months, so maybe it will work for her this time. Other than that she
is only taking Amantadine to alleviate her tremors. I noticed she is having
more problems swallowing and eating. She takes an expectroant twice daily.
The other day while taking it, I believe some of it went into her lungs. She
coughed for about an hour. Kind of ruining the whole relaxed morning. She
did see a speech therapist, but we're talking about a Nursing Home, I don't
think there is much carry through with it. Some of the aides are good at
exercising her before she gets up and others don't. Weekends are very hard
on her, no PT. Any suggestions from the group would be helpful....my thought
process and recall is usually on the blink anyway.
Mary Ann-

Hello Itzik,
Perhaps your father can participate in this drug trial in Europe. Please
let us know what you find out about it.
Good luck,
Pam
Natural History and Neuroprotection In Progressive Supranuclear Palsy
and Multiple Systems Atrophy (NNIPPS)
A new feature of SMarT News will be our research focus where we hope
to provide regular translations of current MSA research.
This study, which begins in January 2001, will gather information
about the natural history of two disorders, Multiple System Atrophy
(MSA) and Progressive Supranuclear Palsy (PSP) and look at the affect
of a drug called Riluzole.
Riluzole is a drug that has been used in the past with Motor Neurone
Disease (MND) and studies show that it slows down the rate of the
disease. Although MND, MSA and PSP have different symptoms, they are
all progressive neurological disorders. This study aims to determine
whether Riluzole will slow down the course of MSA and PSP, as well as
MND.
Patients will receive Riluzole or a placebo. Which one you receive is
decided randomly (as if by the toss of a coin). A placebo is an
inactive compound without any therapeutic benefit. This means that
half the participants in the study will receive Riluzole and half
will receive the placebo. Neither you nor your doctors will know
whether you are taking Riluzole. This is called a 'double-blind
trial.' Riluzole will not reverse your condition, i.e. it will not
make you "better".
Taking part in the study would involve seeing a neurologist every
three months for three years. During these visits participants will
be monitored for any side effects, which is routine in all drug
trials. The monitoring will include brain scans and the trial team
also hopes to undertake postmortem examinations of the nervous system
if possible.
During their visits patients will also complete a series of
questionnaires looking at different aspects of their disease. One of
the aims of the questionnaire is to establish the natural history of
the two different conditions and identify ways to diagnose each more
quickly and accurately.
This trial is being funded by a grant from the European Union and
hopes to include 800 patients from three countries (France, Germany
and the UK). Professor Nigel Leigh, at Kings College Hospital, is
coordinating this trial which will be running in several areas of the
UK.
If you are interested in knowing more about the study you can contact
Nigel Leigh or his Research Nurse Caroline Murphy on 020 7848 5172.

An acquaintance of mine attended this ataxia conference yesterday at the NIH
in Bethesda, MD. Here are his notes and impressions.

Hi
Please have another opinion on the MRI. The radiologist could have made
an error. What area of the brain was the MRI of?
-- Off mirapex?? did he start the mirapex and the sinemet at the same
time? If no, which med did he start first and how long was it before he
started the other med?
??No tremors? not even when he reaches for an object?
--Balance-- PT does work for strengthening the trunk, abdom., legs BUT
it doesn't cure the neurodegenerative disease. The exercises are
boring but I have to do them.
-- one leg freezes??not both? mirapex increased swelling and stiffness
in legs and finger joints of my parkinson friends and I (atypical
Parkinson's with cerebellar involvement/mid brain
involvement,orthostatic hypotension,ect.)
--arms , ect. flying about looking like a seizure?? what did the doc
label these movements??myoclonus? dyskenisia? and are the arm and leg
movements symmetrical? all at once do the arms and legs move? at the end
of the sinemet dose or at the beginning of the dose? certain time of the
day that this happens?
--fluids - drinking enough water??how much during the daytime?

Hi to all , its my first message to you.. i need help Please !
(Sorry for my english)
My father is only 42 years old , and he got the MSA.
we live in israel , we were at all the bigest doctors here ,
and its not looks good.
My father got the MSA 2 years ago , and got alot of phils since then ,
but nothing is changing.
we looks for ANYTHING there is !
no matter where in the world.
no matter how much mony it will take.
no matter what's the risk.
no matter nothing !
we want to take part in any expirance there is in the wolrd, anything.
we heared there was expirance in mice that ended successfuly.
what about it ? we voluntier to try in on my father , is it possible ?
if anyone can help .. please do.
Thank You Very Much ,
Yours ,
Itzik.

Hi Bill,
A member of the Parkinson's Care list posted today asking for advice
on Peg tubes. There hasn't been much response yet, so I thought you
might be willing to write to her directly and communicate your
experiences with Charlotte's feeding tube. The caregiver is Mary
King Givens, e-mail at MKGG@...
Thanks!
Jane K.

John,
That makes sense to me. Sorry your bad days are increasing.
Laurelle

sorry...didn't mean to send the emai yet! he was on sinemet for 3
months with no results, & that's when he was dx.d with msa. he doesn't
have tremors..mainly balance, speech & rigidity. he uses a walker
indoors & wheelchair when we go out. the mirapex caused a reaction which
appeared to be some kind of a seizure, with arms, etc.flying all about.
it's getting more difficult for him to walk with the walker because one
leg is freezing alot. thanks for your advise. it would be nice if things
were more black & white instead of trial & error. regard, jerrie

I guess this is another example of how differently MSA can affect people.
My husband, Jerry, was always slender. When he was weighed before spinal
fusion surgery (result of a fall), I was startled to learn he'd lost some
weight. I did realize he hadn't been eating as well as he used to and
didn't look quite "well" to me. By this time he'd had MSA symptoms for
probably 8 years or so though we hadn't realized anything was wrong that
many years back. Unlike Rob, his muscles didn't seem to weaken but his
muscle control declined (coordination). He also had balance problems and
other problems common to MSA. At least, I think that's what Carol is
implying by saying the muscles atrophy. Maybe not? Like Rob, Jerry
exercised and in fact his thighs and shoulders became more solid and
bulkier (not "fatter") than before. Only his tummy got fatter, and his
chest to some degree. After surgery he developed wound infection and, in
addition to antibiotic treatment for about 1 1/2 years, was told he had to
EAT MORE! He took it seriously and did, although he had little appetite
and eating was becoming an increasingly clumsy process. He did gain some
weight, but I have no idea how much (not a lot) because he never was
weighed again. We did have to buy bigger pants, partly because of weight
shift, due to sitting all the time and lack of certain kinds of activity,
and partly due to some weight gain. He died three years after that
surgery--looking "healthy" but uncoordinated. And obviously he was not
healthy neurologically. There was no autopsy but we assume something went
haywire in the signals controlling heart or breathing--he died in his
sleep. Cause of death was listed as MSA.
It sounds as if it can go either way--weight gain or weight loss.
Jane

Greetings Laurelle!
You mention:
Though there may be some loss, the odd thing about this disorder is that it
impacts different parts of the brain at different rates. Nor is the decline
steady. In fact many of us can tell you that we often have bad days that
will be followed by good days. What seems to occur (at least for me) is the
number of bad days gradually increase.
Regards,
=jbf=
John B. Fisher

Hi Laurene, my name is Annette and my husband John is in the same
general stage as your patent, and Ken perhaps.....but we decided
against Hospice last September when I felt like John was very close
to leaving us. (even the doctor recommended Hospice) He could hardly
swallow and refuses a tube. I guess Hospice must be different in
different states. We live in Oklahoma and we were told that they do
not give antibiotics. I felt that he needed hydrated and
antibiotics and was able to get IV liquids delivered here at home
with the help of my doctor and insurance company. With the liquids he
was able to take oral antibiotics He was back to "his normal" in
three days...and we've celebrated our 36th anniversary, thanksgiving
and Christmas and hopefully Valentines day. that I don't think we
would have if we had had hospice. From what I've learned, Hospice
really serves a great purpose but here in Oklahma I don't think I
will consider it until I feel that we have tried everything and
nothing has helped. My biggest struggle is getting antibotics for
him when he has a uti. Doctors just don't seem to understand that
being weakened by a uti can be fatal if he becomes too weak to
swallow. Our doctor thinks that if he doesn't want the tube then
perhaps he doesn't want to keep on living.but that is not the case.
I think it is wonderful that you care enough to find out about this
disease. I think it's wonderful that you even recognize that it's
not "typical". My experience is that everyone wants to treat it like
a spinal cord injury and it's not! --- In shydrager@y..., kmcrae@a...

Hi eveyone: bob's neuro prescribed selegiline (5m.) yesterday. is anyone
taking it & is it helping? he's not on any other medication for msa.
thanks for your reply..regards,jerrie

Jerrie,
My impression of Eldepryl or Deprenyl (selegiline HCl) was that is was to slow
the progression of Parkinson's. It is not usually a medicine of choice for
MSA. Charlotte was on it for about three years when it first came out
1990-1993? and they took her off it as it was not doimg it's job.
For more info go to:
http://www.health-center.com/pharmacy/parkinson/eldpryl.htm
Take care, Bill and Charlotte

Click here: Seeing in Parkinson Disease
Several of you have asked about vision and eye changes in MSA, Since
this is a Parkinson's plus disease, many of the symptoms will overlap except
that PD medications do not always help MSA patients. This too is not always
so. This article pretty much covers the research about how Parkinson's
affects the eyes. MSA patients that I have known about seem to have much the
same issues. When my husband went for his last eye exam, his tests showed no
change either in his ability to read the charts or a small cataract he had. I
told the Ophthalmologist that I had hoped his cataract had grown, and his
answer was that he was sorry too because that was something he could do
something about, and this he couldn't help. The Neuro-opthalmologist my
friend went to fitted his regular glasses with a prism right there in the
office and gave him much help. I didn't know about this doctor or we would
have seen him.
Barbara Smith

Here's what you need to do to join us at the chat:
1. Download Netscape Instant Messenger here:
http://www.aol.com/aim/ Click on "Get it Now"
2. Install and Run the program
3. Then go to my website:
http://home.inforamp.net/~pbower/msachat.htm
4. Click on "Join my chatroom" to enter.
If you are unable to join the chatroom just send me an email and tell me
your chat nickname.
The chat will start at 3PM Eastern and many of us stay on talking throughout
the evening.
Please drop in anytime Sunday in the late afternoon or evening, the room
will be open.
Hugs,
Pam

Kathy,
Sorry for butting in, but my two cents are....
Each person who receives speech therapy may be given different
exercises/stimulation techniques depending on the problems. For a weak
voice quality, people usu. try the Lee Silverman voice exs. (a summary of
them is on the links site--under symptom management). For tongue/lip
weakness, mouth exercises are given and for swallowing issues cold
stimulation with a dental-type mirror may be used and/or mouth exs. and
changing diet consistencies and postures. Check out the link I mentioned to
see some mouth exs. too.
Consistency in doing the exs., etc. makes a BIG difference in how much
improvement you'll see. However, I know there are times when therapy does
not seem to help much. My suggestion is to get started right away and
hopefully you can improve or at least prevent further progression of
problems.
Rose

Barabara Smith - at address kmcrae@... - was very clear that eyesight
effects with SDS are profound and suggested the "Parkinson Foundation
website" had papers on it this subject. In particular she mentioned color
blindness, which I am seeing signs of in my wife's vision. I could not
find any papers there on this subject. Perhaps I have the wrong site.
Can anyone expand on this subject?
Perry Sennewald 804-244-0018

Hi all,
This Bill (or sense of the House resolution) was introduced in the U.S. House of
Representatives on Jan. 30, 2001 by Maloney (D-NY) and Morella (R-MD).
If you are for stem cell research write your House member that you support this
measure. Opponents are now claiming the research causes new partial birth
abortions, which is utterly ridiculous as the cells will never be placed in a
womb much less spend 6 months in one. If it is so morally wrong, why is there a
need to lie about it to get people against it.
It still has not been reintroduced in the Senate, but Spector (R-PA) has
announced he will introduce it again.
These members of Congress need to be pushed about getting it out of committee
and onto the floor of the House. Mr. Tauzin, Chairman, Mr. Bilirakis, Mr.
Barton, Mr. Upton, Mr. Stearns, Mr. Gillmor, Mr. Greenwood, Mr. Cox, Mr. Deal,
Mr. Largent, Mr. Burr, Mr. Whitfield, Mr. Ganske, Mr. Norwood, Mrs. Cubin, Mr.
Shimkus, Mrs. Wilson, Mr. Shadegg, Mr. Pickering, Mr. Fossella, Mr. Blunt, Mr.
Thomas Davis of Virginia, Mr. Bryant, Mr. Ehrlich, Mr. Buyer, Mr. Radanovich,
Mr. Pitts, Mrs. Bono, Mr. Walden of Oregon, and Mr. Terry. It is currently in
this committee (where it died due to politics last year).
Take care, Bill and Charlotte

Anne:
You mean to tell me I have all that weather to look forward to if I
every get to AU? Guess it's not easy to fine your place with all the
trees down and the pouring rain, but at least you can fine the right
doctor and thats what counts. So good to have you back online. You
know how much you were missed and all the prayers that were said for
you.Someone is watching over you and doing a very good job.
Hugs Vera

Melanie:
Well I'm suppose to be the caregiver of my husband Fred, but I don't
think anyone told Fred that or his mother. I've always had to fight
to get Fred to do what the doctor wants him to do, mostly the meds.
His mother doesn't believe that Fred is sick and that it is the meds
that is giving him this illness, so as she puts it "if he would only
go off the meds , everything would be ok and he'd be back to the way
he was. Fred tells me he never listen to his mother, but everytime
she does this, he stops taking his meds. Yeah! right! he doesn't
listen. So it's been one big battle to try and get him to do what he
should.
How old is your dad? Fred was Dx when he was 56 with PD, He'll be 60
this month. He worked in a store for 27 years, we have three kids and
8 grandkids. Fred loved to go golfing, but hasn't played since the
illness, but talks about it still. He does go fishing with the men
down the street on Fridays if he is up to it. Sometimes he is to weak
to go. That is about all that he does for fun anymore. We have an RV
but only get that out once in a blue moon anymore. Hope to get it out
more this summer.
Does your dad still have the honey bee's? We had some here a few
years ago. They landed on one of my plants outside. Must of been