Re: [MSA] chit-chat Sally>Bill

2006-11-30 22:46:13

Bill
=:
from all 4 corners at a moments notice. I'm alert!!
We really do have some wind generators at the plant but the wind stops
and starts and reverses so quickly it blows the bearings right out of
the turbines plus the lightening hits them so often they are down more
than they are up. We all got a good chuckle out of the environmental
group that wanted to put them up and charge extra to use the electricity
produced from them. I think the last total on the cost of 2 of them at
the plant was something like $5,000,000. and they have yet to run more
than 5 days at a time. The engineers are all still scratching their
heads trying to figure out how to make them work. They have become
quite a laughing matter around here.
Yes, it's cold and windy now. A few snow flakes. Last week it was 65
degrees and sunny, 2 days ago it was 20 degrees with a 20 mph wind
making it about -5 degrees wind chill. It's suppose to get up to 50
today. We do this all winter. It's just part of the KS charm
!!!!!!!!!!
Hope you are all preparing for a great Christmas season. We are holding
our own and Elmer is doing fairly well at the moment. His Dr is still
amazed at how much better he is when he has daily PT. I fight with
Medicare on a regular basis as we all do over this problem. If they
could only understand that since the relays in the brain stem don't work
as they should, forcing the muscles to continue to do what they are
designed to do does help keep the body working more normally.
Much love from the farmer's daughter
Sally

Re: [MSA] RE:Talk about being dicourage

2006-11-30 13:18:48

Vera,
Have you tried to explain that his brain is no longer making a chemical it needs
to send messages through the nerves. The Sinemet replaces that chemical as best
it can. Without it he would become as stiff as a board and draw up into the
fetal position. Since the heart is a muscle, it could also stop his heart.
Doctors know that other medicines also help other conditions he has.
If she can not understand that simple an explanation, you may as well just stop
trying. Some people just feel that doctors and science are wrong :o) after
all if a man was meant to fly, wouldn't God have given him wings? :o)
Hang in there, Bill and Charlotte

Re: [MSA] chit-chat Sally

2006-11-30 01:08:32

Sally,
Jeez! Two months ago you were complaining about hot and windy, now it's cold
and windy!
Need to put up some of those windmills like California where they generate
electricity.
Okay, I give up - on your smiley =:
it a crew cut? Or the cat in the hat smile? I know the =|:
beard). Maybe it's just wind blown from that Kansas wind.
Take care, Bill and Charlotte
P.S. When I took the right brain, left brain course (which WAS short) it was my
impression that the only real "wired" or information exchange connection between
the two was the brain stem. You mention the frontal lobes. Is there more info
exchange between them in the front of the brain?
It is too bad that mental health does not get as much money as other medical
health from politicians. They have closed several mental health centers here
even though the population has gone up 15% in the last 8 years. :o) It now
takes 45 days to get a psychologist appointment even if the patient has been in
a crises intervention situation. This governor's answer - let's build more
prisons. The whole mental health expenditure in our county is less than keeping
5 inmates for 20 years in prison. We have almost 1 million people in our
county.

RE:My sinemet exper-typical-john moller

2006-11-29 22:58:38

John:
How are you doing on the sinemet now? I wonder because Fred is having
the same type of off time that you are having late in the afternoon.
His seem to start after they took him off the Mirapex, but the doctor
put him back on it and he still is having the down times at night.
Have you tried anything that has helped?
Thank You
Vera

RE:Talk about being dicourage

2006-11-29 19:32:55

OK! I give up, I really don't think that my mother in law will ever
understand this illness that Fred has. Try as I may, she just doesn't
understand or maybe just doesn't listen to what I tell her about it.
She can see that Fred has gotten worst over the years, but still
thinks that she can fix it by taking him off the meds, that it is the
meds that is doing it to him.I was really hoping that she understood
finelly. Fred had gone fishing with the man down the street. Harvey
takes him every few weeks , he takes Fred meds with him , the food
and water, drives him into the pond and sets everything up for Fred,
from baiting the hook , to casting it for him. This time Fred had to
change his clothes, so they stopped by Fred's brother house so he
could change. Fred was in the bathroom for over an hour and 1/2
before his brother went to check on him and then saw that he had to
help him dress. His mother called the next day and said she wanted to
come down to see us. I was sure that Dennis had said something to
her. Well she did come down and she saw how Fred was doing, and darn
if she didn't call me the next day and tell me that if I would only
let Fred go up to her place for a few weeks, she would get him back
to his old self by taking him off his meds, that , that is what is
making him the way he is.Now he wonder if sinemet really doesn't do
anything for the MSA why he is on it? So ok where is the wet noodle,
I really would love to ring her neck with it, Ok! I'll be nice, but
it's so hard when I'm the one here taking care of him and she thinks
she has all the answers. I love her, but boy it's hard at times.
Fed up to here
Vera

SDS Support Group Indiana

2006-11-29 11:01:52

Hi Everyone. I have us set up to meet at the church on Dec. 10 at 3pm.Place
Cook Memorial Methodist Church Sunday, December 10 Time P.M. Address 2915
South Walford Drive Jeffersonville, Indiana All are welcome if interested and
of course the caregivers, family. I am trying to get a map to email to all.
Please let me know if you plan to come so I can put enough coffee in the pot.
Since it is close to Christmas would each of you bring a dozen cookies to
share. This would be like a cookie exchange and make a nice tray. I plan to
fix Persimmon Pudding with cool whip which is easy to eat. How does hamsalad
sandwiches sound also? If anyone has suggestions just write to me. Looking
forward to hearing from all of you meeting you soon. Harriett

Re: [MSA] Digital Cameras>Nancy

2006-11-29 10:36:21

Nancy,
$2 per sheet is far too much to pay for good paper. Even Wal-Mart sells it
cheaper - you should be able to buy Good Glossy Inkjet paper for under a $1 per
8.5 X 11" sheet in 50 sheet boxes or about $1.20 per sheet for 10 sheet
bundles. Go to someplace like Staples or Office Depot and you may find it
cheaper.
Take care, Bill and Charlotte

Re: [MSA] Digital Cameras>Lisa> John

2006-11-28 20:40:07

Hey Lisa!
JOHN can u help with this computer stuff?? My son was telling me
something about the computer screen resolution being important with
regards to dpi??
I did try printing pic from a cd and from email. The paper quality made
a difference. The paper I bought was 2 dollars a sheet at a computer
store. Also, the memory card amount that go with the camera, ect. How
much the cards cost. Battery type too i.e. regular, lithium, nicad) I
do know that the digital cameras eat batteries.
I have heard Olympus and Kodak make good digital cameras.
*****check *****
http://www.consumerreports.org/Special/Samples/Reports/0011cam4.htm
http://www.dcresource.com/faq/faq.html
http://www.lycos.com/computers/electronics/digicam.html
what camera is best for u based on what u think is important.
nancy m.

Re: [MSA] Fwd: old batches sinemet?

2006-11-28 17:03:45

Nancy,
You should have a "Use by date" on the label. Heat can affect Sinemet from what
I've
heard, but I think it has to be over 120 degrees F (like a hot car). I watch
our
mailbox carefully in the summer and painted the mailbox a light color as we get
most
meds from Florida because of our secondary insurance.
I am still trying to get over to look at your bed, give me a call 703-471-7215
I
hope to go over to Rockville to see the wheelchairs this week. Or send me your
phone
number again - I lost it.
Take care, Bill and Charlotte

Re: [MSA] Oops! corrected>Bill

2006-11-28 10:20:20

Bill, Bill
What am I going to do with you? I'm glad you found the research
......... although most women could have told you that!!!!! =:
Men use the left side in thinking and listening and living. It is near
impossible for most men to use the left and right side together unless
literally trained to do so and even then, it is difficult for them.
Women from birth use both left and right sides together to think,
listen, learn and understand. It is a major source of conflict in males
and females understanding each other but as John said it is also a
survival thing for both sexes. Both are capable of learning to do it
the other way but it is not a simple thing to do for either.
Brain chemistry is a fascinating thing. Researchers would be smart to
look a little further into how it works which would be very helpful in
rehab from strokes and other problems. The male vs female brain is one
of the areas I loved most when teaching and it is now something I use
daily when dealing with Billy. If I didn't understand how his brain
works, I would have lost my mind by now!!!!!!!! =:

RE: [MSA] Digital Cameras

2006-11-28 10:06:53

Lisa, We got our 11 year old son an Olympus digital camera for his birthday and it's great. Of course, being 11, he knows exactly how to work it and how to get the most out of it. It does plenty of stuff, but, most importantly, the basics. I think it ran around $300 or $400 at the time (around a year ago). We purchased a kid's softward program that came with a camera for around $50, too, and had to take that back (didn't work). It is my understanding that you'll still pay around $300 for one. Perhaps others know more. Debbie

Debbie White
dwhite@...

Digital Cameras

2006-11-28 05:43:01

I am not very savvy when it comes to electronics. I saw for the first time an actual digital camera (boy, guess I've been hiding under a rock.)

My dad always sends money for Christmas so we can pick our own gifts out and I'm sort of thinking I would like to have one of the cameras. In looking around, I see that they are on sale for as low as $49 and goes easily to the range of $599.

Does anybody have any experience or suggestions about this subject? I don't want to be stupid and pick up one at the bottom of the list and get junk, but I really don't know anything about the whole subject.

P.S. I almost never take good pictures and usually waste a lot of money on both the film and the developing and then have a pile of double prints that take up space.

Thanks everybody.

Love, Prayers & E-hugs, (\0/)
Lisa Bushnell /_\

Re: [MSA] Oops! I stand corrected>John

2006-11-27 22:33:08

I think you are correct with it being a hardwired survival thingy ;-]
but it does make it easier for relationship building and keeping to know
that there is not much you can do ... unless you talk the way someone can
hear ;-]]
cheers
sheila

Phlegm/swallowing to Mary Ann

2006-11-27 09:36:20

Hi all,
I agree with Rose on working on volume. We have had good luck with Charlotte
and speech
therapy until last spring. A new therapist came in and worked with Charlotte
for a month
- I could never hear them, even with the door open. Always before, the
therapist sat
across the room and spoke loudly herself to encourage Charlotte to speak loudly.
I found a Lee Silverman therapist here, but she does not do Medicare, so I am
still
looking. We are going to bankrupt Medicare anyway. Got a prescription for a
hospital
bed and a new wheelchair along with a physical therapist "to evaluate and fit"
Charlotte
for the new chair :o) Doctor jumped right on that and said we could get eight
sessions
of PT for that.
On the phlegm being thick. Is your mom drinking enough? Depending on her
weight she
should be drinking (swallowing) 50-70 ounces of liguid per day. Someone MUST
keep track
of this. It does not count to put it in the glass, Charlotte wants new ice all
the time
and we throw the old out, so she only actually drinks an ounce. Drinking is
often the
first thing to go with swallowing problems in a MSA patient. You must keep them
dyhrated.
Take care, Bill and Charlotte

Another new virus

2006-11-27 08:15:17

Hi all,
Another new virus has struck. Beware of attachments!!!! This one seems to be
aimed at kids as it starts with ""A great Shockwave flash movie." Be sure you
update your virus protection often as there will be others adding nasty things
to this virus. They will also change the name.
BEWARE of attachments!!! But especially one called:
CREATIVE.EXE
Read all about it at:
http://www.wired.com/news/lycos/0%2C1306%2C40457%2C00.html
Take care, Bill and Charlotte

Re: [MSA] Oops! I stand corrected

2006-11-27 00:15:50

Just a small thought about this ... I suspect (though doubt we can ever
really prove it), that men are hardwired to continue to observe their
surroundings when talking. My wife used to complain about that when we
talked, until she figured out that I do it with everyone and in every
situation. It's likely a survival trait that's gotten hardwired into our
brains ... the hunter/gatherer that doesn't pay attention soon becomes the
successfully hunted!
=jbf=

Oops! I stand corrected

2006-11-26 18:31:26

Sorry,
Yesterday someone wrote a note about right brain/left brain and I used 6 year
old training to say it was wrong. I see today you were right according to new
research (see below).
I must keep up on research better :o)
Bill
The Sexes, Listening And The Brain
You've heard of listening with half an ear how about listening
with half your brain? That's what men do, according to a new
report. Researchers from Indiana University School of Medicine
have found that men and women listen differently: Men tend to use
the left side of their brains when listening, while women use the
whole brain. In a study presented at the Radiological Society of
North America, the researchers looked at 20 women and 20 men.
The subjects were given headphones through which they listened to
taped excerpts of a novel. The researchers used functional
magnetic resonance imaging (fMRI) to observe the blood flow to
various parts of the participants' brains while they were
listening to the tape. The fMRI showed that for men, listening
triggered increased blood flow in the left temporal lobes of the
brain, the region associated with language comprehension. For
women, listening resulted in blood flow to both sides of the
brain. The researchers point out that their findings don't
suggest that women are "better" listeners than men, but could
indicate that men and women process language differently, The
Associated Press reports. The AP quotes other experts as saying
that understanding differences in how men and women's brains work
could be help in treating stroke victims.

[MSA] voice LSVT (re-post) to Pam for links page

2006-11-26 08:26:03

Hi Rose,
I've just added it under that section.
Hugs,
Pam

[MSA] voice LSVT (re-post) to Pam for links page

2006-11-26 04:06:59

Pam,
I didn't find this under the Speech and Swallowing link at egroups. Is it
listed somewhere else maybe?
Thanks again for all your work on the links and everything else you keep us
up to date with.
Rose

Phlegm/swallowing to Mary Ann

2006-11-26 02:44:23

Mary Ann,
I still agree that a swallowing study may need done to rule out reasons why
this is happening. Maybe it's a reflux or stomach issue, but if the phlegm
"comes back up" and "won't go into the stomach", it sounds like it needs
looked at closer.
Increasing non-caffeinated fluid intake and using a humidifier/vaporizer may
help thin the mucous and make it more manageable for your mom.
Re: decreased volume, again a speech therapist may be able to help your mom
by giving her exercises/suggestions to use. The key here is doing the
exercises consistently--each day. Did you see the post I sent about the
LSVT voice exercises? These may help your mom. The key is to have her be
LOUD when doing them.
I hope you find something that helps your mom.
Rose

Re: Phlegm, etc

2006-11-25 23:41:52

Maybe a more discriptive summery of Mom's condition would have been
helpful before I asked for suggestions on how to help her.
My Mother doesn't really have a swallowing or for that matter a
choking problem, the problem is that her food comes back up due to
all the thick phlegm. It's like this phlegm builds up in her
esophageal area, it won't go into the stomach and she just can't
keep swallowing it, and so when she starts to spit it up she can't
stop until it is all out and all her food with it. This may go on for
a day or two. Does anybody know what I mean when I describe Mom's
thick, sticky, bubbly, clear phlegm? How does the vaporizer help with
the phlegm? Do you use oils in the vaporizer?
Also Mothers vocial volume has diminished greatly.
As for medication, I don't have the list in front of me, but I know
she is on 100mg of Amantadine bid, a new med to elevate her BP. And
once her BP is more stable and she tolerates this new med better then
they want to try Senemet again. In the pass she couldn't take it
because it would make her faint, I think her BP would drop. She also
wears jobes all the time, except for 1/2 an hour every shift, even at
night but I think the aides griped about putting them on and off.
Does anyone know of some cost effective places to get jobes?
For her shoulders topical ointment is used for the pain and Tylenol,
prn. I take her to water therapy 3 X's a week and massage her back
and neck...I use grape seed oil, birch oil for pain, and lemon or
orange oil for a stimulant, also they smell better than the birch...
I use echlipstus (sp) for prevention of fungal problems between her
toes, due to the jobes. Any suggestion about how to keep her neck
from getting so stiff...any special pillows, ect...
Thanks,
Mary Ann and Mable from MN
----

Re: [MSA] Help for next neuro appt

2006-11-25 11:44:18

katie ...
if you can print out information from this site - especially that from
medical mtgs and articles ... and make a list of your symptoms - remembering
that the newest information is that men only use the left side of their
brain when they listen ( so that means lists and bulleted facts)
and present that for him to read ... you may have a chance ... from lurking
on this site for a few months, many have had success with that method ...
at least it is ' hard copy' and you can use it for a reference source ..
cheers
sheila

Re: [MSA] jokes from george relles

2006-11-25 07:04:25

George ...

Keep 'em coming ... I love to chuckle .. and to laugh out loud .. good for the soul ;-]

cheers

sheila

Old friends -- BILL

2006-11-24 21:40:11

In a message dated 11/30/00 5:26:36 PM, bwerre@... writes:
<<
Becky Thomas are you still here?
STILL HERE, THO FIGHTING
BT

Help for next neuro appt

2006-11-24 14:21:51

Hey everyone,
It is me again:)
I am starting to get anxious about my next neuro appointment. He
seems to think that I am somewhat crazy or something. He says that
people who read about things on the internet see what they want to
see. But I really had no answers or direction or hope anywhere else,
so pish posh mr neurologist, I would like to see this happen to your
life:)
I am wondering what tests I should be asking for, if I should push
for a referral to a movement disorder specialist/autonomic disorder
specialist and how to even do that. They have done an EEG, MRI, and
lumbar puncture which were all normal.
I am seeing a general neurologist through my HMO.
He has me on lots of medication and doesn't even listen to my BP
issues, seeming to imply that is something to take up with my primary
care doctor.
I asked him to take my orthostats and he did but didn't do it right
(waited like 30 seconds).
I am young and look even younger, when I go places for appointments,
they usually ask my dad to fill out the paperwork, so I look at least
under 18. I have often been asked if my 15 y/o brother is older than
me. Anyhow, that doesn't help me in this situation as young people
are assumed to not know anything, especially young females.
I want to say hello, I have a BS and was pre-med and I can read, and
think etc etc.
Anyhow, can you tell I am frustrated.
All my fear about this is coming out in frustration.
I want this doctor to help me and hear me or send me to someone who
will.
So, I am rambling.
All of my symptoms scare me.
I know I need to be very explanatory and use lay terms. I will bring
my dad but it is still hard cause I have to do the talking.
Dad says I minimize and smile and act like my cheerful self.
He says they need to know that I then go home and collapse in bed and
can't live my life and am sick.
But I am always so busy being nic and cheerful.
I guess the one place it okay to be sick is at the doctors.
But then i am afraid he will say I am overdramatizing.
Listen to me, dancing around in circles here.
Maybe I at least made someone smile at my silliness.
On a side note, I thrash in my sleep and talk in my sleep and
occasionally attempt to walk in my sleep, I have trouble staying
asleep... is this a sleep disorder?? Does anyone have anything to say
about it?
I hope someone can give me at least some tests to request or a dose
of courage and assertiveness:)
Have a great weekend...
thanks guys,
can't believe so many people are so nice
katie

A Brief Introduction to Movement Disorders

2006-11-24 10:05:48

http://movdisrn.neuroinstitute.org/introduc.htm

jokes from george relles

2006-11-24 07:52:40

Quick Wit:
The suave Central American diplomat was talking to the prim
and proper Washington hostess. "In my country," he said, "the
most popular of all activities is making love."
Shocked, the wide-eyed hostess said, "Oh! Isn't that
revolting!"
"No," the diplomat said. "That's our second-favorite
activity."
xxxxxxxxxxxxxxxxxxxxx
A Thought for Christmas
Do you know what would have happened
If it had been Three Wise Women
Instead of Three Wise Men?
They would have asked directions,
Arrived on time,
Helped deliver the baby,
Cleaned the stable,
Made a casserole, Brought practical gifts and There would be Peace on Earth.
xxxxxxxxxxxxxxxxxxxxx
An Election Poem:
Though the election is over...
The results are not known
The will of the people
was clearly not shown.
But let's stop all the quarreling
Let bitterness pass
I'll hug your elephant
You kiss my ass.
xxxxxxxxxxxxxxxxxxxxxxxxxxx
The Dog/Woman Trilogy
HOW DOGS AND WOMEN ARE ALIKE
* Both look stupid in hats.
* Both can eat 5 pounds of chocolate in one sitting.
* Both tend to have -hip- problems.
* Neither understands football.
* Both look good in a fur coat.
* Both are good at pretending that theyre listening to every word you say.
* Neither believes that silence is golden.
* Both constantly want back rubs.
* Neither can balance a checkbook.
* You can tell what either of them is thinking.
* Both put too much value on kissing.
WHY WOMEN ARE BETTER THAN DOGS
* It is socially acceptable to have sexual relations with women.
* Women look good in sweaters.
* Women leave the room to make a piggy.
* Though they only have two, womens breasts are far more interesting.
WHY DOGS ARE BETTER THAN WOMEN
* Dogs dont cry.
* Dogs love it when your friends come over.
* Dogs think you sing great.
* A dogs time in the bathroom is confined to a quick drink.
* Dogs dont expect you to call when you are running late.
* The later you are, the more excited dogs are to see you.
* Dogs will forgive you for playing with other dogs.
* Dogs dont notice if you call them by another dogs name.
* Dogs are excited by rough play.
* Dogs dont mind if you give their offspring away.
* Dogs understand that farts are funny.
* Dogs love red meat.
* Dogs can appreciate excessive body hair.
* Anyone can get a good-looking dog.
* Dogs like it when you leave lots of things on the floor.
* A dogs disposition stays the same all month long.
* Dogs never need to examine the relationship.
* Dogs love long car trips.
* Dogs understand that instincts are better than asking for directions.
* When a dog gets old and starts to snap at you incessantly, you can shoot it.
* Dogs like beer.
* Its legal to keep a dog chained up at your house.
* Dogs dont want to know about every other dog you ever had.
* Dogs like to do their snooping outside as opposed to in your wallet, desk, and the back of your sock drawer.
* Dogs dont let magazine articles guide their lives.
* Dogs never want foot-rubs.
* Dogs enjoy heavy petting in public.
* Dogs find you amusing when youre drunk.
* Dogs cant talk.
* Dogs seldom outlive you.
* Dogs would rather have you buy them a hamburger dinner than a lobster dinner.
* Dogs are ready to go 24 hours a day.

Pesticides and Parkinsonism

2006-11-24 02:47:16

http://www.ippnw.org/MGS/V6N2Lockwood.html

Atlanta Chapter of the Society for Neuroscience

2006-11-23 22:49:41

Just thinking outloud here... I wonder if they would do a public seminar
on MSA and related disorders? This seems like a good contact point for
those in Atlanta comtemplating forming an MSA support group.
Regards,
Pam
---
http://biology.gsu.edu/atlanta-neuro/default.htm
The Atlanta Chapter of the Society for Neuroscience is an organization
of neuroscientists from Atlanta area universities whose goal is to
promote research and public understanding of the brain and nervous
system.

Cortico-basal-ganglionic Degeneration (CBGD)

2006-11-23 12:35:21

This disorder shares alot in common with MSA. See also:
http://www.wemove.org/cbd.html
Regards,
Pam
Cortico-basal-ganglionic Degeneration (CBGD)
(Rigid Apraxic Syndrome)
This is a rare drug resistant parkinsonism. It is characterized by
the marked asymmetry of the
Parkinsonian features until late in the disease. The patients will
frequently have apraxia (inability to
properly use a limb for complex tasks despite normal power and only
mild incoordination),
actionmyoclonus (i.e. jerky abnormal movements superimposed on normal
movements), "alien limb
phenomenon"(one limb seems to have a mind of its own, sometimes
actively interfering with planned
movements), andstimulus sensitive myoclonus (involuntary jerking in
response to light touch).
Early on the condition may be misdiagnosed as Parkinson's disease.
Marked often painful rigidity may
occur late in this disorder. Tremor is not as common as in
Parkinson's disease.
CT scanning, or MRI may identify local atrophy (shrinkage) of the
surface (cortex) of the brain late in this
condition.

Fwd: National Statistics regarding CBGD

2006-11-23 02:50:13

From the CBGD support group... MSA mentioned... very interesting. I'd
like to see all these disorders eventually unite under one umbrella
since it's looking more and more like they have the same underlying
cause.
Love,
Pam
--- In cbgd_support@egroups.com, Kristine Manion <kahm99@y...
Hello everyone! I wrote to Dr. Geri Hall asking her for her help in
securing any national statistics that the government might have
regarding cbgd. Here is her response. It is really interesting and I
am passing this along to everyone for your information with Dr. Hall's
permission. The bolding and the underlining is my editing, not Dr.
Hall's. I did this to the sentences that carry some really
interesting information.- Kristine
Hall, Geri" wrote:
Date: Tue, 21 Nov 2000 11:49:11 -0600
Kristine - I have been working on this. I even looked at an
epidemiologic study of neurological degenerative diseases in an area
of 100,000 people with over 20 years of data. No one could come up
with any CBGD people in their prevalence data. "Too rare. Too rare."
was the reply of the principle investigator. Very very frustrating.
I think what has happened is that we are seeing increased numbers of
people with CBGD at the secondary and teritiary diagnostic sites
because we now know that it isn't PD, nor is it AD. I think we are
finally seeing MDs who are willing to refer on to the specialists. My
guess is that the number of cases we see will increase because of
improved diagnostic techniques.
ALTHOUGH, I was at a Mayo Clinic conference last weekend on
neurodegenerative diseases. What seems to be happening is that the
overlap of the various diseases (PD, AD, MSA -- Shy-Drager, Pick's
disease, PSP, CBGD, etc) is causing some researchers to think we may
be splitting hairs. One researcher at the conference divided all of
these diseases into two groups based on the protein involved in the
degeneration:
Alpha-synuclean: PD & MSA
Tau: PSP, CBGD, FTDP (fronto-temorporal dementia with Parkinsonism),
Pick's, and some other rare dementias.
The problem is that after an initial period there is tremendous
overlapping between these diseases. For example, I saw a person
diagnosed with Pick's disease who now has the classic PSP
presentation. I asked one of the top neurologists at Mayo who thanked
me for not posing the question to the whole group and said, "What we
would now call that is a Tau degenerative syndrome."
In summary, I think the prevalence data on CBGD is going to increase
in the coming years...but it may be argued that it is a meaningless
description of symptoms.
I hope this helps. Please feel free to share it with the rest of the
group.
Best wishes
Geri
Geri R. Hall, Ph.D., ARNP, CNS, FAAN
Gerontology Clinical Nurse Specialist & Director for Policy and
Outreach
University of Iowa Center on Aging
2159 Westlawn
Iowa City, Iowa 52242
Phone: 319-335-7731
Fax: 319-353-4614
E-mail: geri-hall@u...

Re: [MSA] UK members- hospital placement

2006-11-23 01:32:25

Hi Kristine,

There's no reason why anyone with a Parkinson's Plus disorder can't join us on the shydrager/MSA list. We have 400 subscribers from all over the US and many from other countries as well. Tell everyone on the CBGD list that there is strength in numbers and they should feel free to drop by here anytime. They can subscribe on the web at http://www.egroups.com/subscribe/shydrager or send an email to shydrager-subscribe@egroups.com

Hugs,
Pam

Re: [MSA] Life span

2006-11-22 18:00:35

Bill,
There is someone else on the list who told me her father has had MSA for
25 years. We see time and time again that usually when patients die
it's due to some complication like pneumonia or other infection,
breathing or sleep disorder or taking over the counter medicines that
cause their blood pressure to spike. All of these things can be
prevented and/or treated effectively if caught in time! The caregiver
has to be diligent and the patient has to stop being stubborn about not
going to a doctor to get treatment for their symptoms. I found out
after my mother-in-law passed away that she didn't like going to doctors
and that some of her symptoms had gone untreated for that very reason.
Some people said that she died the way she would have wanted... at
home... however she was only 55 and was not bedridden... I'm sure she'd
rather have had 5 or 10 more years to see her grandchildren grow up.
Her and my father-in-law's attitude became "the doctors can't cure her
so why even bother going". This is not to say that we can prevent every
complication of MSA, we aren't Gods... but people mustn't resign
themselves that they are going to die in 2 or 3 years time, it becomes a
self-fulfilling prophecy.
Love,
Pam

UK members- hospital placement

2006-11-22 17:10:42

Hello MSA support group! I am Kristine and I wrote to you earlier this week on behalf of a cbgd group support member in the UK who needed some advice and feedback from your UK members regarding hospital placement for her mother. Here is what that cbgd member said:

"...I heard last night that my mum is on the waiting list for the long
stay hospital and will stay where she is until a bed is available! Apparently the nursing home representative came to see her and looked at the assessments that have been done by all the staff and said she would not be happy that she could provide adequate care - what we have said all along!"

She also said that she received postings that really helped her family and helped lower the anxiety and stress involved with finding an acceptable resolution to this problem. I thank everyone and anyone who communicated with Jackie for your help. I know, for a fact, that it meant a lot to her.

Thank you for helping! If there is anything any of you would like help with from the cbgd group at egroups, you can post me directly (if you don't belong to the cbgd list) and I will post it to the group. I feel that a door has opened between our two groups and I am thankful.

Kristine Manion

golf (humor)

2006-11-22 05:09:14

A proposed revision to the rules of golf is being sought
in South Florida which will replace the traditional call
of "FORE".
Once a player has hit an errant shot he will be allowed
to call "GORE" while the ball is still in flight. He
can then replace the ball in the same spot and hit it
again.
The player can do this until he is satisfied the ball is
going where he intended to hit it in the first place.
This will cause the time of play to be extended until
such time the player can claim the hole.
This revision is causing some consternation to the PGA
but proponents say it is only fair.
A recent test of this new rule was recently played out
in an exclusive club in Palm Beach County Florida and
the first hole only took 19 days to complete.

Re: [MSA] Old friends

2006-11-22 04:16:23

Speaking of old friends.....
where is Harry, TMS Tom, Mike from Florida, Frank "Brass Handle",Renee?
We know where Sally is, she is in the working world again, but we miss her
and things just aren't the same without Aussie Anne. We hope they can join us
again soon.
Jean & Chrissie

My AOL | Today's News

2006-11-21 22:47:55

http://my.aol.com/news/news_story.psp?type=1&cat=0200&id=00113015542010204

<a href="/group/shydrager/post?postID=hPmX_NbTf2KsZEnDvXuHeC_mRbvCHxxQJXwGKLOtddul09umYGPXPw1WYrX7Ymo0JQfv_R1DL3yVHg">elmopoo@...</a>

2006-11-21 11:57:36

Katie,
I understand what you have said; I've been with my dad for the past two years
watching as this disease takes over his body. Thanks to God that he still
has his sense of humor. Keep your faith and great outlook and continue to do
all that you can. Someday this disease will have a cure, I believe that with
all my heart. Plan on being in the line to be cured when the time comes.
Until then, keep the faith.
I usually only read the posts on the Shy-Drager/MSA list, but wanted to offer
the encouragement that you need and deserve at this time. Take care and do
the best you can, we will all pray for the rest.
Rin.

Other Support Group Leaders

2006-11-21 01:07:14

These people are all interested in getting a group started, they just need
interested members to help out or say they'll attend meetings. Drop them a
note.
mu@... Muriel Durham - Perth, Australia
pwanda98@... Wanda Paulin - Dubuque/Eastern IA
econey@... Elaine Coney - New Orleans/Southern MS
convisor@... Sam Convissor - Northern NJ
ruizoa@... Aida Ortiz Ruiz - New York City
perrys@... Perry Sennewald - Charlottesville/Central VA
dmax295@... Diane Maxwell - Los Angeles/Southern CA
Regards,
Pam

Re: [MSA] Does anybody know? - Celeste

2006-11-20 22:36:16

Hi Celeste,
On the website it says Bonnie Black.
Phone: 615-343-0124, email bonnie.black@...
http://www.mc.vanderbilt.edu/gcrc/adc/msa.html
Regards,
Pam

1996 MSA Conference Transcripts

2006-11-20 13:11:29

These transcripts can be found online at this address:
http://www.egroups.com/files/shydrager/MSA+Conference+Information/MSA+Confer
ence+Transcripts/
While you're there check out the other great links at
http://www.egroups.com/links/shydrager
You'll first have to click on "Sign In" and enter your email address and
password. If you don't know your password go to
http://www.egroups.com/remind
Regards,
Pam

Diet drinks and memory problems

2006-11-20 09:38:35

Got this from safety alerts, Bill and Charlotte
Sweetener May Have
Not-So-Sweet Side
Diet cola drinkers report memory lapses
By Randy Dotinga
HealthScout Reporter
WEDNESDAY, Nov. 29
(HealthScout) -- Feeling
forgetful? You might not be
having a "senior moment" after
all, especially if you're a fan of
diet cola.
New research suggests that
people who consume a lot of
the artificial sweetener
aspartame -- commonly
known by its brand name,
NutraSweet -- are more likely
to suspect they have memory
problems.
But representatives of NutraSweet's maker maintain
there's no evidence that the sweetener does anything to
affect memory.
Because aspartame long has been blamed for memory
problems, researchers at Texas Christian University
decided to take another look at the sweetener and its
effects on people, says Timothy Barth, a psychology
professor and director of the university's neuroscience
department. Previous studies, he says, had not proven a
link.
"There's been this void, this big divide between what
the people have said they're experiencing and what the
laboratory studies have been able to show," Barth says.
The idea was to determine if aspartame users were
likely to complain about memory problems or if
previous reports just came from a so-called "noisy
minority," he says.
Researchers questioned 90 male and female students,
from age 18 to the early 30s. "You wouldn't think there
would be any serious memory problems within these
people," Barth says. "They're all here, getting through
their courses reasonably well, at least most of them
are."
Some participants were heavy users of aspartame
products, such as diet colas or the sugar substitute
Equal. All participants were given standard memory
tests.
Responses on the questionnaires indicated that the
students who used the most aspartame were the most
likely to think they had problems with what's known as
episodic memory.
That's the ability to remember having accomplished a
task earlier, Barth says. "You might be reading an
article in a newspaper and realize you already read it,"
he explains. "It could be that you're ready to give your
child medicine, and you think you did it about 30
minutes ago."
But several things could explain why the
aspartame-using students reported memory problems,
he says.
"The fact that they think they have a memory problem
doesn't mean they do have a memory problem," he
emphasized.
Aspartame users also may have lower self-esteem --
perhaps because they're more likely to be dieters trying
to lose weight and more likely to criticize themselves, he
says.
"It may be that people who decide to consume
aspartame are of a certain personality type," he adds.
"The next series of studies will try to give tests of
self-esteem and mood."
Also, he cautions that it's difficult to measure episodic
memory using tests, adding that more research will need
to be done in that area. Results of the latest study were
presented to the Society of Neuroscience earlier this
month in New Orleans.
Dr. Harriett H. Butchko, NutraSweet's vice president
of medical and scientific affairs, downplayed the
significance of Barth's findings, saying other, more
sophisticated research has yielded different results.
"The results of [other] studies clearly demonstrated that
aspartame, even in amounts well above those typically
consumed from products, has no effect on memory,"
Butchko says.
Aspartame is digested into its three components _ the
amino acids aspartic acid and phenylalanine, and
methanol -- but the body gets these components in
much higher quantities from ordinary foods, she says.
According to the NutraSweet company, aspartame is
manufactured mainly from amino acids, which make up
protein. While it has about the same caloric makeup as
sugar, it is much sweeter, meaning that much less is
required to sweeten a food or drink.
Paul Spiers, a neuropsychologist at the Massachusetts
Institute of Technology, has studied aspartame and
found no link to memory loss. One of his studies was
funded by the parent company of NutraSweet, but
Spiers denies any conflict of interest.
"I know from our own research that students drink
aspartame when they're under stress," Spiers says.
"They often drink Diet Coke for the caffeine, but don't
want to gain weight. They're writing papers, and if
you're writing three papers that you haven't done all
semester, it's hard to keep track of what you're doing
and what you're writing."
The Texas Christian University study, Spiers says,
simply was not fine-tuned enough to detect whether
aspartame caused the memory problems cited by
students.
Regardless of whether the findings have been accepted
by others, TCU students who participated in the
research seem to have reached a consensus on its use
in their own lives.
Diet soft drinks seem to have vanished from Barth's lab.
Students simply stopped drinking them during the study,
he says.
Short-term use of aspartame may be OK, he says, but
studies have not investigated exposure over many
years. "There is a potential [for harm] there," Barth
says. "If you don't have to take that chance, why take
it?"
What To Do
Use your own judgment about consumption of diet soft
drinks, low-calorie yogurt, sugar-free ice cream and
other products that use aspartame. Some people drink
10 or more cans of diet cola a day, and most experts
believe that such heavy use of any product is worth
thinking about.
And, if you do think you're having memory problems,
contact your doctor.
For more information on aspartame, including what's in
it and how it's made, visit NutraSweet online. Or, take
a look at statements issued in support of aspartame's
safety by the American Diabetes Association and the
American Dietetic Association.
On the other hand, some experts recommend not using
the artificial sweetener. For a glimpse of their viewpoint,
take a look at an answer to a question on the matter
posed to best-selling author Dr. Andrew Weil.
Or, you might want to read previous HealthScout
articles on artificial sweeteners.
SOURCES: Interviews with Timothy Barth, Ph.D., professor of
psychology and director, department of neuroscience, Texas
Christian
University, Fort Worth, Texas; Paul Spiers, Ph.D.,
neuropsychologist,
Clinical Research Center, Massachusetts Institute of Technology,
Cambridge, Mass.; and statement from Harriett H. Butchko, M.D.,
vice
president of medical and scientific affairs, NutraSweet, Chicago
This article can be accessed directly at:
http://www.healthscout.com/cgi-bin/WebObjects/Af?ap=55&id=105775

Does anybody know?

2006-11-20 07:18:35

What Dr. Robertson's secretaries name is and what her e-mail is?
Celeste O'Neill

Old friends

2006-11-19 23:20:17

Hi all,
I just heard from Maria and Dan. Dan had a blood transfusion and is hanging in
there. Maria has to check her email from a library (in Florida).
But that reminded me of some others we have not heard from lately.
Becky Thomas are you still here?
Tom Burt did write recently.
Anne is still trying to get her act together in upside-down land, I do hear from
her once or twice a week.
Mascha - how are things in Zurich?
Phil, how goes it in London?
Nan, did you win your election? Just because you are a member of the Board now
- you can still write :o)
I'm sure I have missed some old-timers, we want to hear from you too. My brain
is in overload from all the new members.
Take care, Bill and Charlotte

Warning - update your virus definitions

2006-11-19 19:42:29

Hi all,
This virus (MTX) was discovered in August but labeled low risk. It has grown to
be a much higher risk and you should be sure your virus checker will get it. If
you have updated your virus definitions since September 1st, you are probably
okay against it - but there are other new viruses also. It will actually
prevent you from getting a update to protect or remove it.
http://www.msnbc.com/news/495873.asp
Be SURE you have virus protection if you use the internet or email. A $1000
computer is worth $40 of virus protection. I just bought Norton Works 2001 for
this computer and my new computer which is being built.
Take care, Bill and Charlotte

Re: [MSA] Bookmarks to Pam

2006-11-19 10:05:40

Pam,
Do you know if any of these need added to the egroups links?
Rose

Digest Number 357

2006-11-19 01:08:45

Welcome all you new people!
We have doubled in numbers since July on the list and this message shows how
much more we can do for each other. We are finding more pockets of people that
know local help areas. The local groups seem to be growing also.
Don't be afraid to jump in with questions or answers.
Take care, Bill and Charlotte

Re: [MSA] NEW MSA/Shydrager Regional Support Groups

2006-11-18 21:05:42

Pam,
There is a person in the Charlottesville, VA area also (look at the MSA National
Group newsletter. Charlottesville is 120 miles from Washington, DC. That may
be a good place for a group as the University of Virginia is there and they have
a movement disorder group there. They could possibly get help from that group.
Take care, Bill and Charlotte

Re: [MSA] Thanks Guys:)

2006-11-18 19:31:31

Katie
I love little Elmo! whoa I am glad I am not the only adult who does:)
Katie I spoke to a friend of mine who is a physicain and he said that
sometimes docs get frustrated too when they can't diagnose someone.
Sometimes they try so hard and I guess they too just have to be patient
like us.
Yeah loosing ones capacities isn't the greatest , but it is there. I am
glad to see u keep going on:) Remember - It will be O.K.
nancy m.

Thanks Guys:)

2006-11-18 10:09:06

I received many responses to my state of discouragement.
I appreciate them all, sorry I don't have the energy to answer
everyone but please know I felt them all, especially the hugs.
The discouragement comes and goes, as does the encouragement.
I appreciate the suggestions and empathy and sympathy...
I do feel like my doctors think I am nuts sometimes.
i am losing my life/capacities and they don't seem too concerned.
But I keep going:)
I see the sunrise and I told my dad I love him this morning.
I called my best friend and talked for two hours.
I talked to a man in a wheelchair who I had never met and listened to
his story.
I smiled at God...
I am wearing my favourite shorts (elmo sesame street shorts).
"Je cherche le soleil, au milieu de la nuit."
--I look for the sun in the middle of the night--
"...and in this darkness love can show the way."
I LOVE to be and to love.
...and i am still scared:(
Hope all is well... I will keep trying and learning and growing and
doing my part!
love
katie

Re: [MSA] Back on line

2006-11-18 05:38:55

Sylvia,
Welcome back, glad to hear your mother is mobile again. Are you freezing up
there in the Canadian mountains?
Take care, Bill and Charlotte

Re: [MSA] Phlegm, etc

2006-11-18 05:15:51

Mary Ann
You may want to ask the doctor about medicines like Baclofen or Amantadine for
the stiff
shoulders. Have they tried Sinemet or any of the Parkinson's meds on her?
Physical
therapy may also help and can be covered by Medicare with a doctor's
prescription.
On the phlegm, we use a vaporizer (cool mist) constantly is my wife's room and
it helps.
Speech therapy may also help as often it is a swallowing problem. Has you mom
ever had a
video X-ray swallowing test with a trained speech therapist watching to evaluate
the
test? If not, it is time for one.
Take care, Bill and Charlotte in Herndon. VA, USA

Re: Digest Number 357

2006-11-17 20:31:24

Gary,
Hi, I live in Fishers Indiana, I go to Noblesville to water therapy
twice at week at Riverview Rehab Center. The water is warm 82
degrees I think. I couldn't handle regular cold water. I also have
MSA/SDS. I've being going for a year now and greatly enjoy it.
I also know of another pool with warm water in Noblesville/Fishers
area called Stoney Creek. You join there more like a membership to a
club. Plus I think that IU Medical center has a warm pool also.
Celeste O'Neill
--- In shydrager@egroups.com, Gary Huddleston <garylovesjoyce@y...

Re: [MSA] Phlegm

2006-11-17 17:00:18

Greetings Mary Ann!
You mention:
I would think an expectorant would be more in line with what she needs. Of
course that might be what you intended to write.
Also note that increased water intake can also help this. If your mother
has problems with swallowing she might need either a speech / swallowing
therapy or feeding tube.
Just a couple of random thoughts.
Regards,
=jbf=
John B. Fisher

Phlegm

2006-11-17 03:36:48

Hi all;
Mary Ann Pedersen (mrs pedersen) from the frozen state of Minnesota, USA. My
mother, Mable, who will be 80 in January suffers from Shy-Drager. My concern
is about the large amounts and the thickness of phlegm mother spits up along
with most of her meals. We have done some testing and don't know if there is
more to do. She is on a decongestant to thin the phlegm out but I don't
think it is helping much. Mother has 2 to 3 days a week of bad phlegm days
where the spitting makes her sick all-over. Also any suggestions for
shoulder repair? At this point Mother can not feed herself most days. An MRI
has not been done on her shoulders but maybe soon next on the list of things
to do for her.
Any suggestions what has worked for you or someone you know. or sites I
should look up would be greatly appreciated.
Thanks you
mrs pedersen

Re: [MSA] FEW QUESTIONS

2006-11-17 03:36:16

Stacey - you might ask a medical supply store for advice - my mother has a
colostomy and there are many devices, creams, etc. that are used to eliminate
irritation of the stoma area. Good luck with this.
Elaine Grimmesey
I
<<
Dear Group, It has been a long time since I have been able to post anything,
but my thoughts are always with everyone. I am hoping for some help. Does
anyone with a feeding tube have anything that holds the tube in place? My
father has a 12 J tube made by Cook. I use tape to hold it in place but feel
there must be something out there that is more reliable. I have heard
mention
of a plastic round disk that is put flush against the stomach that makes the
tube stable. Also I find that my father drools a lot when we have him
sitting
up in the wheel chair. I assume this could be caused by the fact that he
might not be swallowing as often but I don't know that it could also be
excessive saliva. Does anyone have any info on this? Is there anything that
can help this? He seems to spend most of early evenings coughing very watery
saliva up. I appreciate any help. Thank You, Stacey
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Re: [MSA] Fwd: Reason

2006-11-16 19:22:42

thank you for the wonderful story .. this is something that would have
happened to me ;-]
I am still laughing ....
cheers
sheila

FEW QUESTIONS

2006-11-16 07:09:05

I
<<
Dear Group, It has been a long time since I have been able to post anything,
but my thoughts are always with everyone. I am hoping for some help. Does
anyone with a feeding tube have anything that holds the tube in place? My
father has a 12 J tube made by Cook. I use tape to hold it in place but feel
there must be something out there that is more reliable. I have heard
mention
of a plastic round disk that is put flush against the stomach that makes the
tube stable. Also I find that my father drools a lot when we have him
sitting
up in the wheel chair. I assume this could be caused by the fact that he
might not be swallowing as often but I don't know that it could also be
excessive saliva. Does anyone have any info on this? Is there anything that
can help this? He seems to spend most of early evenings coughing very watery
saliva up. I appreciate any help. Thank You, Stacey

Re: [MSA] Recently diagnosed

2006-11-16 05:09:09

Hi Lorena,
I'm sure others will jump in to help with your questions. I wanted to
make sure you were aware of these
two support organizations you can contact in the UK.
Sarah Matheson Trust : Support to MSA patients in the UK
http://glaxocentre.merseyside.org/msa2.html
SPRING (Special Parkinson's Research Interest Group) :
For all Parkinson
& Parkinson Plus disorders including Multiple System
Atrophy
http://spring.parkinsons.org.uk/SPRING_Times/14/6
If your mother is fainting it's probably due to low blood pressure
(orthostatic hypotension or OH). There are several medications that can
help, so if she's not taking anything that's something you can try to
push for. Salt tablets also help raise blood pressure. There is some
good information on managing OH on our LINKS page.
http://www.egroups.com/links/shydrager
Click on "Symptom Management" then on "Blood Pressure Problems". There
is also some good general information on MSA .
To access those links you first have to click on "Sign In" and enter
your email address and password. Every subscriber has a password but if
you don't know yours go to http://www.egroups.com/remind
Regards,
Pam

Re: [Fwd: [MSA] TO MARY STRONG &amp; LIST Elaine Pole Mary Lou too]

2006-11-16 02:26:24

I emailed www.Hertz , etc., a received a prompt answer from them saying they
did not sell the Superpole but a Volker bed which sounded interesting. They
are sending me info.
Barb Pond (VA)

Back on line

2006-11-15 17:29:30

Pam,
Thanks for continuing to keep me posted. I unsubscribed for a while
because I felt I needed a break. I think I am ready to handle life again
so I am back online. Mom is much improved after spending time in the
hospital. Her electrolytes are back to normal and she feels so much
stronger. She is able to knit a little after almost two years of not
being able to do so. The therapy that they have been doing on her hands
has really helped. She is greatly encouraged. She is even walking more
with her walker of course.
Sylvia

NEW MSA/Shydrager Regional Support Groups

2006-11-15 12:49:51

Two new people have indicated they'd like to start up a local support
group provided there is enough interest:
In the Chicago, IL area:
Contact: Debbie Thomas
email: D3E3B3@...
In the Indianapolis, IN area:
Contact: Gary Huddleston
email: garylovesjoyce@...
Also there is a group now forming in:
Louisville, KY
They will possibly hold a meeting in December
Contact: Harriet Gossman
email: Harriettlpn2@...
If there are other people interested in getting a group started please
let us know. This list is a great place to meet others near you. I
keep a database of members and can potentially match you up with people
from your area, drop me a line and let me know where you are. For those
who don't live in the US, I can help you out as well. We have members
from:
AUSTRALIA
BOLIVIA
CANADA
CHINA
FRANCE
GERMANY
ISRAEL
ITALY
LEBANON
MEXICO
NETHERLANDS
NEW ZEALAND
SOUTH AFRICA
SWEDEN
SWITZERLAND
THAILAND
UK
USA

Current MSA/ShyDrager Support Groups

2006-11-15 06:40:04

These groups have had at least one meeting already. If you're
interested in attending a future meeting please contact them:
San Francisco, CA
Contact: Sophia Dohm
email: erd5@...
Nashville, TN
Contact: Christine Latham
email: crlatham@...
Memphis, TN
Contact: Amy Beckmann
email: subiaco@...
Boston, MA
Contact: Carol Langer
email: cblanger@...
Minneapolis, MN
Contact: Diane Rydrych
email: diane.rydrych@...
Washington, DC
Contact: Bill Werre
email: bwerre@...
Salem, OR
Contact: Judy Mears
email: mears54@...
Portland, OR
Contact: Charmayne Bischel
email: charmayne@...
Columbus, OH
Contact: Judy Biedenharn
email: Jhbiedenha@...
Denver, CO
Contact: Parkinson Association of the Rockies
email: parrockies@...

Recently diagnosed

2006-11-14 22:09:17

Hello, I'm from Colchester, England, and my mother who is 63 years
old has recently been diagnosed with MSA. With hindsight, she may
have suffered with this condition for several years before her
various consultations and subsequent diagnosis. My mother has an
appointment with a specialist (a professor in Cambridge) on 11
December for various tests etc. I know this has probably been asked
many times but what sort of questions should we be asking? At
present, my mother suffers from fainting, slurred speech and has
difficulty walking. Her attention also seems to wander a bit too.
My parents are not really telling my brother and me much about how
she is on a day to day basis and we believe that they are trying to
shield us. It's difficult to know what to do and how to help when we
don't really know what is going on.
It would be really helpful to us if someone could let us know the
sorts of questions we should be asking.
Sorry for the long note.
Thanks
Lorena

Summary of Mailing List Commands

2006-11-14 21:47:42

Jeff Millman has updated his webpage and provided us with a place we can
go to remind us of all the available commands we can use on this list,
subscribing, unsubscribing etc. You might want to bookmark his site
below:
http://www.wenet.net/~ccjm/shy-drager/e-list.html
Also check out his main Shy-Drager page at:
http://www.wenet.net/~ccjm/shy-drager/index.html
Thanks Jeff!

Re: [MSA] Changing Experience with Sinemet

2006-11-14 06:36:28

Good Morning.
Ralph used the Sinemet CR when it became very difficult to swallow. Even then, I would have to stand behind him and stimulate his neck and throat by rubbing the back of his neck. He could not swallow the larger levadopa pills. Also he took it at night when there was no great need for pills.

During the day time I put his pills in applesauce or jello.

But there were times when he could help himself to all of his medication. He had a medicine box with a timer on it.

Over time tho, it became evident that none of the medication did any good. This was typical, our neurologist told us. The non Parkinson dx was a factor too. The med was for Parkinson symptoms. For a while we were on a regimen of med every three hours day and night. Dr decided that in order for both of us to get some rest the night time doses were eliminated.

This illness is so perplexing. Neurologist explained to me that the illness is so unpredictable that there is no sure way to tell if it is the illness causing the ups and downs or if it the medicine working sometimes and not at others.

We had good care, it was just such a challenge that all kinds of things were tried. They finally told us, try what you feel might help. If it works let us know.

I kept a journal and turned it in to the doctors when we would go for appointments.

I do not blame any of the doctors for what was happening. They were stumped, and they had access to everything through their research department.

The brain surgery was not done because it was explained to us , if it was done there would be damage done and then if a medication came along it might not work because of that damage. Ralph never had much of a tremor except when he was sleeping. He did rub his thumb and middle finger together, coining, I think it is called. He rubbed his legs, but I do not know why. This was usually done when he was in the car. nerves maybe.

There were times when he saw things that were not there. One day on our way to church he asked why I had two little people in the car, sitting between the front seats. He had people at the foot of his bed waking him up. Terrible nightmares when he would scream out in terror.One night he was running from someone who was trying to kill him. He heard me talking to people when there was no one here but us. At other times he was as alert as before his illness. But sometimes he would talk to me, about me, as though I was someone else.

Terrible experiences. What caused them I do not know.

Other days he was his usual self and seemed to not be ill at all.

These are my experiences. There must be many of you with similar ones.

Ralph was an ins agent and he had to resign and sell our business because it was impossible to drive or to do the computer and typing that had to be done. Speaking on the phone was good some days and bad on others.

Someone mentioned loss of hearing. Ralph had to get a hearing aid. One amazing thing. After he had surgery to remove the bad PEG, he no longer needed the hearing aid. He could hear everything clearly. Some days he could speak clearly and loudly and distinctly. He even sang along with his video tapes. When the anesthetic wore off he was like a rag doll. Could not do anything for himself.

Every day was a challenge. He was up and down. He was helpless but he could crawl over the end of the bed and fall to the floor afterwards. He could get out of just about any restraint he was put into.

Some of this will sound unbelievable. To me it was too. He had to have 24 hour care to prevent really bad injuries.

Now as I think about all of the experiences we had, I still wonder what was going on. No one knew. We just had to take care of the symptoms.

When I get to a place where I can sit and think about all of this I will try to get a chronological order on paper.

When you have to watch a loved one gradually, or quickly, go away from you, it is absolutely awful. Being the one who is the patient has to be maddening. So frustrating and humiliating.

All I could do was to depend upon the Lord for extra strength and upon our doctors to monitor what was going on.

To all of you from caregiver to patient, I wish you the best. Hang in there and keep trying. There is something new coming everyday through folks with experience. We did not make it, but that does not mean you can't.

God bless every one of you.

On a sunny and beautiful Texas morning.

Barb [INLINE]

Re: [MSA] Digest Number 357

2006-11-14 06:24:42

Hello Everyone!
My name is Gary Huddleston garyjoyc@...
My father was diagnosed with Shy-Dragger/MSA about ten
years ago. The disease has progressed slowly up until
now. My father is blessed by having a positive outlook
on life and the support of a loving wife (caregiver)
and family. He also has an excellent appetite.
Is anyone out there aware of any low-impact physical
therapy programs designated for Shy-Dragger/MSA
patients?
When my father attends a routine doctor's appointment
I always leave with the feeling that his doctor can no
longer recommend any new interventions to slow the
progression of my father's condition.
I speculate that in my father's case, he has maintain
a high quality of life so far because of his positive
spirituality, loving and supportive family and low
impact physical exercise regiment.
He once participated in a low impact excercise program
through Crossroads Inc. here in Indianapolis. I
believed that my father's insurance covered the cost
for a year. My father's insurance no longer covers the
therapy.
Today my retired parents live off a fixed income and
can not afford to pay for the therapy out of pocket.
Again, is any aware of any low-impact physical therapy
programs designed for MSA person?
Thanks?
Gary Huddeston

Changing Experience with Sinemet

2006-11-13 20:09:03

John,
Have you tried using the Sinemet CR (50 / 200)(CR is continuous release)?
Peg has been using that in conjunction with regular sinemet for the last few
months and it worked better for her than straight sinemet 25 / 100's. Her
schedule is
Sinemet CR 50 / 200 at 7:00 AM, 1:00 PM and 7:00 PM.
She starts with 1/2 regular sinemet 25 / 100 at 6:00 AM and then
takes another 1/2 regular sinemet 25 / 100 every 2 1/2 hours until the
evening. We have noticed that Peg is very suseptable to problems when she
misses a dose by as little as 20 minutes to 1/2 an hour. That's why we use
a timer for the regular sinemet. This schedule was suggested by one of the
researchers from UC at San Diego. Together with the University of Guam they
have been carrying out research out here on Lytico Bodig a Parkinson like
disease found primarily on Guam.
Best wishes.
Peg and Jim from Guam
PS Peg has been having problems opening her eyes in the mornings for last
month or so. At first we thought it was linked to the sleeping pill she was
taking but now it has been happening even when she doesn't take the pill.
Also Peg's BP has been spiking differently. Previously she almost always
had a blood pressure spike in the afternoon. Now her BP is typically very
high in the morning (170+ with a pulse of over 90) immediately after she
gets up. This quickly drops off and she soon needs one or even two
midodrine. The afternoon spike now only rarely happens. Something is
happening with Peg but of course we don't know what.
My experience with Sinemet is changing. I'm curious if anyone has had
similar experiences.
First a little background. I've been taking it for 15 months. 25/100s. I
started out with 1&1/2 tabs three times a day. In the first half of this
year it started losing effectiveness. After seeing my neuro in late July, I
went up to 1&1/2 tabs early a.m. then one tab every three hours. That didn't
restore my mobility satisfactorily so with the OK of my neuro I went to 1&1/2
tabs every 3 hours. That worked better.
Then in mid September my OH started getting much worse so in October we
dialed back the Sinemet one step, back to 1&1/2 early a.m. then 1 every 3
hours. I've been on that schedule since.
Now I'm noticing three things:
1. It seems to work better earlier in the day, up to early afternoon,
than later in the day.
2. My "on" and "off" periods which used to be very distinct and
predictable -- "on" starting about 45 minutes after a dose and tapering off
after about 2 hours -- no longer are. Sometimes the Sinemet seems to have
little or no impact at all.
3. My worst "off" period is logically in the evening, after 8 - 9,
since I take my last dose between 5 and 6 p.m. But when I wake up the next
morning, then more than 12 hours since I had my last dose, my mobility is
better than it was 4 hours after my last dose. Go figure.
This sound familiar to anyone?
John Moller... Yawning at the never-ending election campaign in the shadow of
our Nation's capital
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Research in France

2006-11-13 15:25:45

Here is an article about research in France which could not be done in the USA
at NIH under existing guidelines. Stem cell research in this case might
eliminate the need for fetal tissue research, since new stem cells can be grown
in test tubes.
Take care, Bill and Charlotte
Fetal cell therapy promising for
Huntington's disease
By Keith Mulvihill NEW YORK, Nov 29 (Reuters Health) -
Scientists in France have shown that injections of fetal
brain
tissue into the brains of people with Huntington's disease
can
stabilize and possibly improve their condition.
Huntington's
disease is an inherited neurological disorder that is
currently
untreatable. It most often strikes in mid-life, causing
progressive
loss of motor control and mental skills as well as changes
in
emotional stability. The disease progresses over a 10- to
20-year
period, eventually leading to death. The very small study
included
five patients diagnosed with Huntington's disease who were
followed for 2 years before undergoing the experimental
treatment. Each patient received approximately five
injections of
brain tissue from 7.5- to 9-week-old fetuses. The fetal
brain
tissue was directly injected into an area of the brain
called the
striatum in the right side of the patients' brains. The
striatum is
the region that appears to be most affected by the disease.
One
year later, the patients underwent the same procedure in
the left
side of their brains. The patients were then monitored
again for
another year. During the 2-year period, the patients were
evaluated with various exams that measured their
neurological,
psychological and physical abilities. These five patients
were
compared with 22 "control" patients who were diagnosed with
Huntington's disease at similar stages but did not receive
the
experimental treatment. "Clinical improvements, or at least
stability in scores that showed progressive worsening in
controls,
were seen in three of five patients with Huntington's
disease who
had received (the fetal cell transplants)," write Dr.
Anne-Catherine Bachoud-Levi and colleagues from INSERM in
Paris, France. Their report was slated to be published in
the
December 9th issue of The Lancet, but was released early
after
the French government made some results public this week. A
larger study is in the works and the investigators hope
that this
will lead to more definitive results about the nature of
the therapy
and its effect on Huntington's disease. "Three patients is
a very
small number and so the study can only be said to suggest a
benefit," said Dr. Christopher Ross, speaking on behalf of
the
Huntington's Disease Society of America (HDSA) in New York
City. "One of the limitations of the study is that it lacks
a real
control group--one that more directly simulates what the
five
patients went through in terms of treatment. For instance,
these
patients received immune system suppressing drugs so that
their bodies would not reject the foreign fetal tissue.
These drugs
may have had an effect on the disease," Ross told Reuters
Health. Nevertheless, "if this kind of approach is
effective, it
would make the development of stem cell therapies quite
attractive," Ross added, referring to the fact that fetal
tissue is
hard to come by, not to mention controversial. Stem cells
on the
other hand can be harvested from a variety of non-fetal
sources.
Huntington's disease affects men, women and children of all
ethnic groups. Nationally, about 30,000 people have
Huntington's
disease and another 150,000 are at risk of inheriting the
disease
from an affected parent. Currently, there is no known
treatment
or cure, however some symptoms including depression may be
controlled with medication, according to the HDSA.
SOURCE: The Lancet 2000;356:1975-1979.
© 2000, Reuters Health Information Services

Re: [MSA] Just thinking./James

2006-11-13 12:30:19

James, you are very welcome. I love you all.

I was taught a long time ago to respect the military folks.

Had a lot of them in my family.

I, for one, think our Commander in Chief has abused his "troops". But I do not know what to do about it except get a new Commander. I sincerely hope that process will continue and we will have a man who respects his troops and all of the rest of us.

I have been so ashamed of the man in office now as he went to all of the ceremonies all over the world to remember the men who served and then goes to Vietnam and poses beneath a picture of the murderer of so many of ours and his own people. What a joy it would have been to have an honorable man represent us at Normandy and all of the rest of the places in the world.

Those chances are gone but we can hope for a better year ahead.

May God bless all of you. And thank you for serving all of us.

Two of my nephews were injured in Vietnam.( Family members lost in WW 11). Not a pretty story but they will carry those scars forever as will other men and women in the military, wherever they have served.

It makes my heart ache when I see families torn apart but I also know there are sacrifices to be made by many as they go about protecting all of us. We do not thank you often enough.

Have a rest filled night and a lovely tomorrow knowing there are a great many of us who think of you often.

Barb

[INLINE]

Bookmarks for help

2006-11-13 06:11:39

A few bookmarks for some help. Barb
Visit the addresses below for further assistance with your
care needs:
Elder Care home page:
http://p0.com/t.d?ykAM2D-S=careguide/news/0011b/e/e_2hm.htm
Assess Your Situation home page:
http://p0.com/t.d?hEAM2D-S=careguide/news/0011b/e/e_2at.htm
Finding Care home page:
http://p0.com/t.d?nEAM2D-S=careguide/news/0011b/e/e_2fc.htm
Financial & Legal home page:
http://p0.com/t.d?skAM2D-S=careguide/news/0011b/e/e_2fl.htm
Daily Living home page:
http://p0.com/t.d?vEAM2D-S=careguide/news/0011b/e/e_2dl.htm
Community & Support home page:
http://p0.com/t.d?3kAM2D-S=careguide/news/0011b/e/e_2cs.htm
Resource Center home page:
http://p0.com/t.d?9kAM2D-S=careguide/news/0011b/e/e_2rc.htm
Store home page:
http://p0.com/t.d?wEAM2D-S=careguide/news/0011b/e/e_2st.htm
..................................................................

Southern Indiana / Western Kentucky MSA Support Group

2006-11-12 23:08:06

Harriet Gossman Harriettlpn2@... has found a group of people
interested in meeting in the Louisville, KY area. She's contemplating
holding a meeting in December depending on people's preferences. It will
either be held in her home in Jeffersonville, IN or at a nearby church.
Please contact Harriet if you are interested in attending a meeting in that
area anytime in the near future.
Regards,
Pam

Re: [MSA] PEG's - Bill

2006-11-12 13:44:30

Hi Bill,
Please tell Charlotte that she is famous now because every time we discuss
what direction we need to go with Mark I always bring up Charlotte and her
PEG tube and explain it to the Doctors. Mark thought that if he does have to
have the PEG tube that he can't eat anything by mouth so I have straightened
him out on that. Gross is way past me by this point, between the supra pubic
cath and the bowel problems, the PEG should be a breeze!!!
Thanks again, take care and tell Charlotte we said "HI"
Judy

Re: [MSA] Mark's Speech Therapy - Rose

2006-11-12 10:06:28

Hi Rose,
Interesting that you recommended the swallowing study and therapist. Mark is
scheduled for that very thing tomorrow at 10:00 AM. The therapist did try
some foods with him today but wants the x-ray's done also. This will be the
3rd time Mark has had the swallowing tests but it's needed. Mark is still in
ICU and they are considering a heart cath on Friday just to rule out any
cardiac problems that might have caused the lungs to fill with fluid like
they did. He has been on a pureed diet for the last two days and doesn't
seem to mind.
Thanks for your help.
Judy

Re: [MSA] Dyskinesia

2006-11-12 08:31:46

David,

Dyskinesia (un-coordinated involuntary movement) is actually a side effect of Sinemet. Charlotte (my wife) suffers from it and takes Amantadine for the dyskinesia. Often, dopamine agonists can make it worse, but every patient is different. Bradykinesia is movement problems.

Take care, Bill and Charlotte

RE: Discouraged-KT

2006-11-12 04:46:16

KT:
I know about being discourage. I don't have the illness, but live
with someone that does. So I'm on the outside looking in , more or
less and that in it's self is alot of hard work. Never feel sorry
that you are crying on our shoulder, really it's an honor to have you
do it, because it shows that you are at home here and I know what it
feels like to have some place to call home and tell my troubles to. I
didn't have that before coming to this group. We tried for a year to
fine out what Fred had. Most of the doctor's said there was nothing
wrong with him. Only one would face up and say that there was
something, but wasn't sure what. Just knowing that helped, because we
knew then it wasn't all in our head. We did fine the doctor that told
us Fred had MSA, but it was only after six months and a watchful eye
that we came to know that it was this. Hang in there. You can always
cry on my shoulder.
(((hugs))))
vera

RE: [MSA] reflux to Sherilyn

2006-11-11 15:46:34

Sherilyn,
You may already know some of this, but just in case.....
Keeping the head of the bed raised at night while sleeping can help prevent
reflux--as well as not eating or drinking 2 hrs. prior to lying down.
Avoid citrus (orange/grapefruit juices), tomato based products (spaghetti,
lasagne, etc.) and caffeinated items (chocolate, soda, coffee). Also, no
tight clothing (esp. a tight bra or belt) and maybe avoiding peppermints and
spearmints.
Maybe you have more problems with the liquids because they're acid or
caffeinated based?
One more thing, refluxed food/liquid can be aspirated into the lungs is
actually more of a problem than aspirating the food/liquid as it's going
down because it contains the acid from the stomach also.
Rose

Re: [MSA] Just thinking. Barbara/John

2006-11-11 15:22:37

Hi Here is a cute one. [INLINE] I enjoy this family so much.
Being able to disagree without being tacky helps us all.

Refereering in a discussion group has been a joy for me for a very long time. Being the Devil's advocate is a usual spot for me.

As I said before, I am open to learning from all who share.

Love to all who are reading this. Jump in if you want to, maybe it will help get your minds off all of the heartache and pain going on in your life. Like a walk in the park, the stirring of the heart and mind can be refreshing.

Barb

Re: [MSA] Just thinking. Barbara

2006-11-11 03:02:25

Greetings Barbara!
Personally, I find this discussion both enlightening and helpful. I *need*
to know how others view the situation. I learn through the process of open
exchange.
It also helps reaffirm my belief this is one of the best behaved mail lists
on the Internet. When many would start to REALLY fight, this group reaches
toward consensus and support. An excellent, though rare trait in this type
of support forum.
By the way, I *really* enjoy the little GIFs you attach. They do help
brighten the day.
Regards,
=jbf=
John B. Fisher

Re: [MSA] Just thinking. Bill

2006-11-10 21:40:48

Yep. Keep sharing your thinking. We are all on the same track. Everyone votes and then has the choice of accepting the outcome or not.

I do not show favor to anyone. All have the right as a citizen to vote. Where I disagree is when the loser does not have the fortitude to think of anyone except him/herself. And on top of it trashes the rules that give them the very opportunities they are using, (Amazes me.) Then can still not accept the outcome. May be my old head and heart is becoming confused.

This may be the wrong forum for this discussion but whatever happens will affect all of us for a very long time. The ill and the well.

This country has gone through a long and sometime volatile history but, thank goodness the founders had enough wisdom to look ahead. Can you imagine what would be going on if we had no Constitution? How in the world did they see this far ahead to the possibilities? Must have been the prayers for guidance before they did anything.

Thanks for the discussion. I hope all of the readers are not growing weary of the discussion. If so we can go off on the personal mails. Just let us know.

Love to ya. Barb

[INLINE]

Re: [MSA] My Sinemet Experience... Typical?

2006-11-10 15:46:46

John,

My mom (69) has been on Sinemet CR25/100 since she was diagnosed with Parkinsonism in 1995. So at some given dosage, she has been on Sinemet for around 70 months or so.

Until June 2000 (under the direction of her neurologist), she was on two Sinemet CR25/100 and 0.15mg of Permax daily. This had worked fine for quite some time. But we never recognized that her general condition wasn't so good. We just thought that her aches and pains were normal with the Parkinsonism - we found out later that these were signs of diskinesia ("down time" from a lack of enough Sinemet). She was also becoming more agitated and confused at this time.

Thanks to lists such as these, we discovered that there was such a thing as a Movement Disorder Specialist and found one here in New Orleans. The regular neurologist never mentioned this to us (found out that he had been a student of this particular MDS at one time - but that's another story).

Once we got an appointment with the MDS, he immediately took her off the Permax, and increased her Sinemet CR 25/100 to four, then five, then six per day, until we found a number that made her feel good and reduced her "down time".

Anyway, regarding her Sinemet. Now at 6 per day, and no agonists. While we noticed a remarkable change for the better in her, she was still in an agitated state a lot of the time. When the MDS saw her again three months later, he decided to put her on Requip. While now on 3 mg of Requip per day, we have been able to reduce her Sinemet intake and found a much better combination. While she is confused some of the time, she is much better off in her well-being, including her complete overall attitude.

All through-out the change in meds, we found that in order to make everything work properly, we had to evenly distribute the meds over a 24 hour period. We tried to skip taking them during the night (2 or 3am) and make up for the "down time" in the morning, but this never did work and seemed to take forever to make up. So we just divided everthing over the 24 hour period.

Our current schedule is

3am 1-Sinemet CR 25/100
9am 1-Sinemet CR 25/100; 2-Requip (0.5 mg)
3pm 1-Sinemet CR 25/100; 2-Requip (0.5 mg)
9pm 1 Sinemet CR 25/100; 2-Requip (0.5 mg)

This currently gives us zero "down-time".

Enough about my mom's case. What I am getting at is you may need an agonist (Requip or Permax) to help balance the amount of dopamine that is produced from the Sinemet. And you may want to try spreading your timing out over a full 24 hour period. Just some thoughts you may want to consider, since each of us in this condition is so different when it comes to meds.

Sorry for the length of this email, but I hope it might give some insight.

David Rehm
drehm@...

Re: [MSA] Input from an Alpha-synuclein Researcher

2006-11-10 13:44:02

Pam,
Thanks for taking the effort to ask Dr. Wolfe about this. It is indeed a
very interesting email message from him. As always, your efforts are
noticed, appreciated and help.
Regards,
=jbf=
John B. Fisher

My Sinemet Experience... Typical?

2006-11-10 07:36:40

Hi Gang:
My experience with Sinemet is changing. I'm curious if anyone has had
similar experiences.
First a little background. I've been taking it for 15 months. 25/100s. I
started out with 1&1/2 tabs three times a day. In the first half of this
year it started losing effectiveness. After seeing my neuro in late July, I
went up to 1&1/2 tabs early a.m. then one tab every three hours. That didn't
restore my mobility satisfactorily so with the OK of my neuro I went to 1&1/2
tabs every 3 hours. That worked better.
Then in mid September my OH started getting much worse so in October we
dialed back the Sinemet one step, back to 1&1/2 early a.m. then 1 every 3
hours. I've been on that schedule since.
Now I'm noticing three things:
1. It seems to work better earlier in the day, up to early afternoon,
than later in the day.
2. My "on" and "off" periods which used to be very distinct and
predictable -- "on" starting about 45 minutes after a dose and tapering off
after about 2 hours -- no longer are. Sometimes the Sinemet seems to have
little or no impact at all.
3. My worst "off" period is logically in the evening, after 8 - 9,
since I take my last dose between 5 and 6 p.m. But when I wake up the next
morning, then more than 12 hours since I had my last dose, my mobility is
better than it was 4 hours after my last dose. Go figure.
This sound familiar to anyone?
John Moller... Yawning at the never-ending election campaign in the shadow of
our Nation's capital

Input from an Alpha-synuclein Researcher

2006-11-10 02:06:03

I received the following note today from Dr. John Wolfe, a researcher in
Ontario, Canada in response to my questions. His research paper is at
the bottom. Very interesting to say the least! If anyone has more
questions I'd be happy to send them on to Dr. Woulfe. He seemed happy
to answer my questions and gave me alot more information than I ever
expected.
Regards,
Pam

sacbee Technology - Wired Life: Netscape 6 browser draws boos from readers

2006-11-09 20:44:32

http://www.sacbee.com/ib/tech/wiredlife/wired050100.html

Re: [MSA] So what can we do if Bush is elected?

2006-11-09 12:12:38

Dawn,

I'm sure letter's stating the need for this research to him could help. Unfortunately, from what I understand it takes more than a simple majority to over ride his ban when he does it by exectutive order. I think it takes a 2/3 majority to over ride it. In the Senate, it may be close since there are many Republicans there willing to fight for the research. But the House may be a real problem

I have not heard much from the Parkinson's people these days on the ban. I know that Arlen Spector (R-PA) has introduced a Bill in the Senate to push the research at NIH. There are some real fights looming in the Senate this year anyway as someon