Elaine. Just read your note. Here is a site from my Quest Magazine which is published by the Muscular Dystrophy Organization
Hertz Supply 1-800-321-4240 www.hertzsupply.com
We never had to use anything like this nor do I know anything about this company. It is in a list of supplies for folks who need help.
Let me know what you find out.
Barb
[INLINE] Beautiful in Arlington, Texas
Pam and all,
One thing to remember is the reason for great advances in research in the last
few years, as mentioned by Dr. Robertson. In Fiscal Year 1994, Clinton directed
that NIH go ahead with Parkinson's research that was held up for 12 years under
Reagan and Bush. This (Reagan's ban in 1981) was the first time in the history
of NIH that a President ignored the ethics panel (that Reagan himself appointed
and voted 18-3 to go ahead with the research) and banned medical research.
Over the past several years the ethics group at NIH has drawn up extremely tight
rules on using stem cells and obtaining stem cells. This set of rules was
approved earlier this year and put into effect by President Clinton. Basically
it is the same as the Canadian rules and much more stringent than most European
rules. It allows the use of the in vitro fertilization blastocysts which are
about 140 cells and which will be destroyed if they are not used for curing
people. These cells can not make a human unless they are first inserted into a
womb and attach themselves to the wall of the womb. If that happened the outer
layer of the blastocyst would become the placenta and the rest would be
programmed to become various human cells. At this point the cells are not
programmed to become skin, blood, muscle, bone or any other particular cell and
cannot, on their own become a human.
It has taken since FY 1994 to get results and now Bush has said he will ban this
research (pluripotent stem cell) at NIH. If you notice, Bush's aides refer to
his decision as stopping abortion. This is a lie, since abortion is the
physical removal of an embryo or fetus from the womb. These blastocysts are
definitely not a fetus and there is a great debate, even among clergy as to
their status as an embryo as that implies that they could grow into a human.
Whatever you call them, they have never been in a womb and never will be in a
womb. Even some Catholic priests are questioning blastocysts as a human as they
have never been inside a womb.
Next, Bush's aides said in their statement that there was no need for using
these pluripotent cells as research had already shown that adult stem cells
could be used instead. That is another lie. Adult stem cells have shown some
promise in SOME cancer research, but even there, pluripotent cells have shown
greater promise in some cancers. Researchers have grown neurons from adult stem
cells, BUT only the pluripotent stem cells have been grown into dopamine
producing neurons. The dopamine producing neurons are the great hope for a cure
for Parkinson's and have cured Parkinson's in mice (at NIH) and monkeys (in
France).
Since we do not know enough about MSA yet to determine exactly what cells and
what mechanism causes MSA; we do not know if pluripotent cells hold a cure for
MSA itself. BUT, we also do not know for sure if we are the first generation of
MSA patients and that our kids may be more susceptible to this disorder.
Charlotte and I want all possible cures to be researched. A cure for
Parkinson's could point the way for a cure for MSA. Pluripotent stem cells have
shown they are a possible cure for Parkinson's and research on them should not
be banned.
Take care, Bill and Charlotte
Good morning. Got this from my daughter. To all you travelers on the
net. Have a good day
Barb
Rose,
I do hope to meet you someday at Judy's would be fine.
They have not decided when to do what. I am going to have an EGD
test soon as they schedule and a test through my intestine through
my ileostomy soon too. They called me yesterday and told me
to expect this soon.
Thanks for the post. Yes we had a nice Thanksgiving,
Ken and Elizabeth and I just stayed at home and Ken worked
on getting out Christmas decorations and watching the Ball Game,
mostly the Game :0). I cooked and Ken Elizabeth helped,
for 11 almost 12 on (Dec 6th) she is an excellent help to me.
I thank God for my family. and also my SDS family. I have
so much to be thankful for and so many blessings.
Much love to all,
Donna Maggard
i have poor circulation and my veins break from just wearing a watch. i
wear compression hose prescribed kind. I drink water and gatorade.
please make sure u see ur doc about this. very important.
nancym.
Greetings again, Lisa!
You mention:
I'm 44. Fortunately, my neurologist recognizes that 'usual age of onset'
does not eliminate the possibility of early onset.
Regardless of the actual cause ... just manage the symptoms. Doctors will
prescribe things based on the symptoms. Such as PT for balance / ataxia
problems. Not for MSA problems.
That neurontin should help. It won't cure it. It won't make it go away
completely (at least it didn't for me). But it should beat it back into
cowering submission! ;-) I still have the tingling and pain, but it's no
where near as bad as it is without neurontin.
Yes. That's why I went to a neurologist. You may be developing problems
with your cerebellum. That's the MSA-C portion of the MSA. Discuss this
over with your neurologist during your next appointment. By the way, don't
talk about 'cerebellum' or 'MSA-C' or 'cerebellar dysfunction'. Just
describe your symptoms and the impact on your life.
So, what do I do to cope with this?
First, as balance gets worse, don't be afraid to get a hiking staff. Not a
cane. A cane tosses center of balance forward. Bad if you have balance
problems. An adjusted hiking staff helps maintain your center of balance.
REI and similar stores sell such things. A sample of one:
http://www.leki.com/htsierraasfs.html
Second, recognize you WILL adjust to this. Some adjustments include knowing
some situations will now be very uncomfortable. I now am VERY careful when
I use stairs. I fear I will fall down them. A reasonable fear when balance
and poor coordination exists. I prefer elevators now. And the Scrambler
(also my favorite) is WAY off limits for me now. Sigh!
Third, recognize some unconscience adjustments you make tends to decrease
your range of motion. Wow! That sounds more complicated than it is.
Instead of moving my head only, I tend to move my head and body. I do that
to decrease the dizzy / off-balance feeling. Range of motion exercises help
me maintain my ability to move freely. So, short term physical therapy can
help you learn some of these range of motion exercises, and exercises to
help maintain balance as best as possible.
Finally, 'use it or loose it' really does apply to balance. Sure, I feel
dizzy. The worst time for it is when I arise after staying still. However,
it does improve (not go away!) as I move about. Frequent short walks helps
more than a single long walk. Frequent exercise of balance and movement
helps remind my cerebellum.
Sorry for the long note. Hope it helps.
Regards,
=jbf=
John B. Fisher
Does anyone else have problems with "modeling" or "Just poor
circulataion" spots on there limbs? What can be done for them?
Celeste
http://www.send4fun.com/snowballfight.htm
I would like to know if there are other members near where I live? I am in Santa Barbara, California, now and since this is a bigger place, I would like to see if there are others that I could meet with. Maybe in the Ventura area or something, I would be willing to drive there.
I know that my old neuro says I don't have MSA, but he is overruled by a few other doctors. I do seem to have a degenerative autonomic problem with my BP and nerves - whatever the name. So many things are the same, although my age seems my barrier in being taken seriously in the outside world.
Interestingly and frustratingly, my equilibrium is taking a beating right now. Kind of weird, because before the Florinef it was always my BP bottoming out. Now that I have that taken care of for the time being, it's the pain in my legs and hands that are the biggest. The newest of the "big" problems is I guess balance. If I look up high or way down from up high, I get really sick. I remember last year going to a city fair and getting the worst ride of my life on my all time favorite ride the "Scrambler." I've never had height fears like that, but it makes my stomach turn. It was really disastrous in a multi-level parking garage last month. So I would have to say it's getting worse.
Has anybody had these kinds of things come on suddenly? I would like to meet some of you in my area if possible.
Love, Prayers & E-hugs, (\0/)
Lisa Bushnell /_\
Mary,
You sure have been a help. Don't be sorry. I am hoping that whatever is
causing all these weird symptoms is moving slowly. Sometimes I even think I
must be all better and then I have to refill my pill box and it kind of
reminds me of where I started and where I am now. My new doctor actually
made a reference about all the meds (even though lower doses right now)
keeping standing up. I had to laugh, because that's what I've thought for
the longest time, but he didn't know that.
I am hoping that if he switches me to the ProAmatine that maybe my bp
problems right now will be mild enough.
Love and Hugs, Lisa
How badly did your father hurt himself when he fell? Is he in a
nursing home for good, or just until he recovers from his fall? What
medication is he taking to stabilize his blood pressure? How old is
he?
No, this is not the Inquisition! It's just that all of these things
play a part in how well a person copes on a day-to-day basis. When
Rob was hospitalized this summer for a clinical trial, he had to go
off all his meds. He went from being fairly stable and self
sufficient to needing help to do almost EVERYTHING. Fortunately, as
soon as he was back on his meds he regained much of what was lost.
But I can really see how a person could become dependent, especially
if there is some degree of depression about failing health.
Try to encourage him to do things for himself, and if he will
eventually be released from the nursing home, focus him on that, and
getting prepared to be more self sufficient. This is a lousy
disease, but it is possible to manager the symptoms fairly well, at
least for a while, and have a decent quality of life. If there is
one thing I have learned about this, it's that every patient is
different.
Hang in there,
Carol & Rob
Hi Jean and Chrissie,
Thanks for the thoughts and prayers, Mark will be thankful that you are
thinking about him. I'll keep you posted on his progress. Thanks goodness
there IS progress.
Take Care,
Judy
Hi Debbie,
That does sound like what happened to your Mother and yesterday when I was
explaining it to Mark's children they said their Grandfather, who was 86 and
died last Friday, had the same experience.
Thanks for your kind thoughts.
Judy
Jane, Hooray for you!
Hi Bill,
Mark has pretty much gone past the ability to speak at all anymore. We did
have his therapist back a couple of months ago but didn't make any progress.
Mark's pulmonary Doc told me today that when they send Mark home we'll be
needing a suction machine to use at home. He is using one in the hospital
and it does help.
Yesterday the liquid wasn't even clear drainage, it was white and frothy and
was pouring out of his nose and mouth. I've never seen anything like it in
my life. Congestive heart failure was mentioned today but so far his ECG and
blood enzyme tests were OK.
Thanks, take care and tell Charlotte we said "hi"
Judy
Hi John,
I'll ask about that, of course, now Mark has pneumonia, still sounds real
croupy, has a temp of around 99 but does look pretty good and was being his
same old obstinate self before I left this evening. As always, this disorder
breaks all the rules when it comes to WHY things happen.
Take Care,
Judy
My father does not seem to have some of the symptoms that I here in
some of these emails. What he does have is the problem with his blood
pressure fluctuating. But as of right now not much of a problem with
eating or any of the normal daily routines. He does seem weak at
times when he is walking and part of me wants to think it's because
of the fact that he is in a nursing home right now and he is not
allowed to walk by himself.But prior to falling last month (which
started this horrible trip into the world of ShyDrager)he was able to
do everything for himself, now he seems to need so much help.I guess
what I am really getting at is this.Does this seem normal (the rapid
deterioration) or is it a combination of the nursing home and the
shydrager?
P.S. It didn't seem that long when I said it in my head.
Interesting article as it speaks of degenerative diseases. Ralph was
never exposed to any of the wartime chemicals but he worked in Texas
City, Tex. Monsanto plant during the late forties and early fifties.
Doused himself with carbon tetrachloride when he was exposed to a
foolish man who put a lighted cig into a bowl of gasoline. His left leg
was severely burned, 3rd degree, and it was always sore due to thin
flesh in the scar.
The neurologist Ralph went to is the head of the Neurological department
at Southwestern. Dr. Richard Dewey. They are getting on top of a lot of
things.
Love to all. Barb
Hi Judy, just wanted to say hi, and to tell you that I am so sorry to hear
Mark is in the hospital. Glad he is better, we will remember him, (and you)
in our prayers. This is what is so scary about this disease, you don't know
what to expect next! Please keep us posted on Mark's condition. Hugs, Pat in
OKC
yes, you can .. but it might be time to change brands ...
they can become less effective .. and upping a dose may be one way ...
but changing to another is a choice
cheers
sheila
Hi, everyone - question - my husband, Bob's, neurologist just returned my call
and informed me that Afrin nasal spray and Tylenol were both o.k. for Bob to
take for a bad head cold. He now takes Trazadone, Aricept and Zyprexa (sp?) - I
know I should trust Dr. Rosenfeld, but I have developed such a respect and
confidence in your opinions, I would like input before I give him something that
will exacerbate his already poor balance. Especially at night - any feedback
(in the next 35 minutes????) Thanks so very much.
Elaine Grimmesey
Hi Lisa:
You asked about the pro amatine. Fred has been on the florinef
before, it was well for the b/p , but his legs and feet swelled so he
had to go on a water pill for that. The doctor took him off the
florinef and changed it with the pro amatine. His b/p is doing
alright, not dropping to much now, also he hasn't had the problem
with the swelling the way he did on the florinef. I hope this is a
help to you.
Always Vera
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
Judy,
How terrifying! It's a good thing you were home and found Mark in
time. Our thought and prayers are with you both. Keep us posted.
Carol & Rob
Judy,
Sorry to hear about Mark, hope things are better today.
Ann from Soddy,TN
Judy, THis sounds exactly like what happened to my mother Joyce, but they didn't catch it in time at the hospital. I am so glad they caught it in time for Mark and I hope they figure out what the cause was. Will be thinking of you and hoping he is home soon. Debbie
Debbie White
dwhite@...
This is Annette, John's "lovegiver". I too am sorry to hear of the
recent passings...One thing that I gave thanks for this past week (as
always) is that I still have John. As some of you might know, I
thought that I was about to loose him a couple of months ago. thanks
to the Mercy of My Lord, he passed that crises and is about where he
was three months ago. I am very thankful for you Barbara and others
that have stayed on the list after loosing their loved one.As we have
discussed, John is in the total dependency stage, I am thankful
though that we decided not to go with Hospice because he would not
have been given the IV fluids and oral antibiotics that I feel helped
him turn the corner and enabled him to be with me to celebrate our
36th anniversary and another thanksgiving day (he was able to be
taken to Tulsa to spend the day with our kids and grandkids) and we
are beginning to look forward to Christmas. My prayers will be with
you and others that will be experiencing the holidays, perhaps for
the first time, without a very important member of the family. God
Can one become immune to his/her particular dosage of Zoloft and have
to take a stronger one?
Thanks,
Donna Waggoner
Lisa,
Warren takes both Florinef and ProAmatine. So far he hasn't had any
swelling in legs and gained no weight. The ProAmatine is supposed to work
on the blood vessels working more slowly than the Florinef. If your b/p
isn't too bad at this point it may be that ProAmatine is all you need. We
don't take any decongestants especially since they've warned about them in
the papers.
Sorry can't be of more help, Mary
Hi Everyone,
Mark is in ICU at the island hospital. He is stable but still critical.
Yesterday morning he was fine one minute and next to death the next. I had
just stepped out of the shower and came into the kitchen to find him sitting
in his wheelchair at the sink with paper towels at his nose and mouth and
liquid flowing from both. I called 911 and am so glad I did because his
lungs had filled with liquid and he was literally drowning. We have no idea
what triggered the lungs to fill but tests will be taken to try to figure it
out. It may have been a cardiac problem even though Mark has never had any
heart problems. It may have been something he aspirated but he says he
wasn't eating or drinking.
Please watch out for symptoms like Mark's. I have never seen something come
on so strong and so fast with this disorder and I'll keep you posted as to
what we can find that may have triggered the event.
I'm home for a few minutes to water and de-water the poodles and when I left
the hospital Mark was resting. Once his lungs get dried out the tests will
begin, he does seem much better today than yesterday. What a frightening
experience!
Take Care,
Judy
My wife takes one Florinef every day and we have not seen any weight
gain from this regimen. On days that we will have reason to be out for
dinner or having company or can expect some greater activity that might
cause some change in the blood pressure, she will take one Proamatine as
well. Since this drug is of a short term duration it does not seem to
raise the blood pressure to dangerous levels. We try to monitor the
pressure a few times each day to make sure.
Hi Carol,
I've been a silent member of this group for about a month. I was a
caregiver for Bruce Gehrke, who died last October. The experience of
knowing him and becoming familiar with SDS had a profound effect on me.
Because of my time with Bruce, as well as other reasons, I joined Peace
Corps, and spent the last two years in Mongolia. I am GLAD to be home!
I want to write a book about my experiences with Bruce integrated with my
world travels. (I was also a volunteer in Gabon Africa, and I sailed most of
the way around the world.) One of my aims with this book is to inform more
people about MSA. I wonder if I could apply for a grant.
Tomorrow I'm going back east (I live near San Francisco) to visit friends
and family in Baltimore and NYC for a few weeks, but am resolved to start
this project in earnest when I return, mid-December. In fact, I'm telling
my boss "I quit" today (yuck), and will work exclusively on writing when I
return.
I gotta go now, or I'll be late.
If I could write this book and get it published, who knows? It could help
save lives! Go Jane!
Thanks, and take care,
Jane Baldwin
-Raymond,
My new medications have managed to get me back on my feet. First one
was in March, I started on Mirapex on a 7 week build up dose to 1 mg
then in June they added Sinemet 25 mg, then in September they added
Amatadine 100mg. this combination some taken 3 times a day some 4
times a day has put me back on my feet again, it's like a mini
miracle. This "movement cocktail" as I call it, took me from almost
being bed ridden to 75% movement improved. Of course it doesn't help
my Orthostatic Hypotension but is does help manage my MSA/Parksinsons
plus.
Celeste
Hi,
I'm sorry your father has MSA, but I'm glad you found this group - we
can help answer a lot of questions. I already read Bill's reply
about infections, and I certainly agree. I'd also like to add that
sometimes low blood presure itself can cause confusion. When Rob (my
husband, age 54, diagnosed almost 3 years ago) acts confused my first
question to him is, "did you take your meds?" Most often the answer
is no! When the blood pressure gets too low, there is literally not
enough blood to the brain. In Rob's case, he tolerates low bp pretty
well, but I notice the confusion before it gets so low that he feels
dizzy.
The best thing, of course, it to check with your dad's doctor.
Welcome to the group,
Carol & Rob (from Lexington, Massachusetts)
Hi Vera,
Thanks so much for the info. I really had no idea all this swelling was
from the Florinef. That answers a lot for me because my feet and legs are
almost always swollen and getting worse, well I think it is. I didn't swell
at all when they first put me on it so I would be happy to change if I can.
Hugs, Lisa
JETMEAD,
Confusion could be caused by some meds - which ones is he taking? However,
confusion is often caused by infection in MSA (SDS) patients. Any sudden
deterioation in condition should cause concern about infection. Doctors may
overlook infection as MSA patients often run lower "normal" temperatures than
98.6 - often as low as 96 degrees.
In some cases it has been a symptom of the disorder, but it is not usually bad
and often only a loss of short term memory. Aricept has helped some in that
case.
Take care, Bill and Charlotte Werre
Your best bet is to call his primary care physician or whoever knows the
medicines he is taking. They can prescribe the best medicine for his use. The
meds he is taking do have interactions with some other meds and it would be best
to talk to the doctor about them.
Take care, Bill and Charlotte
Thanks so much for your response noting the posting on cold remedies. I will
look up this information, from the referenced digest, tomorrow at work. My
Dad has a bad head cold now and my Mom is reluctant to give him anything
without knowing how safe it is. The medications he is currently taking are
Trazadone, Zyprexa and Aricept. Balance is his primary trouble - so anything
causing drowsiness would naturally not work well.
Any feedback directly related to good and bad cold meds combined with the
above meds? Thanks again!
My father has just been diagnosed with this condition and I have so
many questions. The first one is Mental Confusion is this normal or
is it a result of the medication he is taking.
Lisa,
My dad is on both Florinef and Midodrine. He really needs both to keep his
blood pressure up. The Florinef is longer acting and stays in the body
longer, so if you go off of it be sure you taper down don't go off all at
once. Most people do not take the Midodrine after 5 pm (maybe somewhat
different for different people) because it's quicker acting and you don't
want the BP elevated when you lay down to sleep.
Rose
Dear Sophia,
Sorry to hear you are worse and wish i could be of some help. Take care my
dear and we'll keep in touch, even if you can't answer.
love, Mary
Hi Lisa:
You asked about the pro amatine. Fred has been on the florinef
before, it was well for the b/p , but his legs and feet swelled so he
had to go on a water pill for that. The doctor took him off the
florinef and changed it with the pro amatine. His b/p is doing
alright, not dropping to much now, also he hasn't had the problem
with the swelling the way he did on the florinef. I hope this is a
help to you.
Always Vera
My new doctor suggested switching me to ProAmatine (Midodrine) because I am
gaining so much weight on the Florinef. He said it doesn't have the same
water retaining as Florinef.
Somewhere I saw it mentioned that the two were being used together. That
confuses me a little, but I got a med sheet from the pharmacist on both meds
and the Midodrine says not to take it with meds that contain decongestants
or diet aids unless checking with the doctor first. The meds listed were
phenylpropanolamine, pseudoephedrine, or pheynlephrine.
I would like to know how some of you have done or if you have tried
ProAmatine (Midodrine)? My blood pressure has not been too much trouble
lately. Mostly right now the pain and numbness in my legs. Going for
another Nerve test next week.
Love, prayers and e-hugs,
Lisa Bushnell
-Original Message-----
From: Pam Bower <pbower@...
To: shydrager@egroups.com <shydrager@egroups.com
Date: November 26, 2000 12:18 PM
Subject: Re: [MSA] Re: Cold Medicine
My goodness. I cannot imagine all of the grief that is being shared at
this time.
All of the families mentioned certainly have my condolences and prayers.
May I suggest that all of you who can, keep in touch with this group.
They are a bulwark and safe haven for the grieving, I know that from
experience.
May God bless and comfort each one. As you remember the good times the
bad ones will gradually fade away.
Love to all. Barbara Selleck and family.
Pam,
The PPA warning is really for taking too much of it. I don't remember the exact
amount, but I think you will find that 3 normal doses a day is okay for a short
time.
Take care, Bill and Charlotte
I've just learned of the following passings. Your prayers and condolences
are requested for their families.
Richard Allen passed October 2000
Father of Dave Allen Dave@...
Glen Vander Sluis passed October 2000
Father of Jan Seerveld JAN.SEERVELD@...
Maxine Wadsworth passed March 2000
Mother of Brenda Schumann schuwoman@...
Suzanne,
There have also been warnings lately about cold remedies that contain PPA.
I'm not sure what that leaves you with for options... good old fashioned
chicken soup maybe. :)
Take care,
Pam
Suzanne:
You were asking about the cold rememdies meds. Pam put one in a few
months ago. If you go to message #3297, you will fine it there. It
tells you everything you want to know.
I think this is what you want .
Vera
Suzanne,
Anything with psuedoephedrine (like sudafed) is NOT good for people
with MSA - can raise blood pressure dangerously.
Carol & Rob
As I normally correspond from work, and am presently at home, I don't have my
saved correspondence. Please remind me what cold medicine is NOT advisable
for someone with MSA to take. Thanks so much!
Suzanne Grimmesey-Kirk
These two medicines are not in the same class.
Mirapex (pramipexole) is a dopamine receptor agonist along with Parlodel
(bromocriptine), Permax (pergolide), and Requip (ropinirole) which bind to the
dopamine receptors in the brain. This type of medicine helps the nerves move
signals probably by boosting the sensitivity of the neurons, much like signal
amplifiers on a cable line.
Sinemet is a combination of Carbidopa which helps the levodopa get into the
brain and levodopa which turns into dopamine once it gets into the brain. Once
it turns into dopamine, it functions much like natural dopamine. Dopamine acts
like the cable on a cable line and carries the signals between the amplifiers.
Comtan and Tasmar help make the dopamine last longer in the brain, sort of like
the electricity that runs the amplifier in the cable line.
All of the different classes of meds work in different ways to help signals get
from the brain to the muscles which cause you to move.
Take care, Bill and Charlotte
Hi Vera: Bob has only been on mirapex for a few days, & during those
same days he started pt. So it's hard to tell if either is helping or
hurting at this point..but thanks for asking. I understand mirapex &
sinemet are very similiar, & the sinemet didn't help at all. I'll let
you know in a few wks. regards, jerrie
Barb Smith,
This is a good article and helped me understand a little more about the interaction of the proteins in the brain.
Did you get the latest NPF Research notes booklet? It has more on proteins and a very good article on balancing your diet by a registered dietician.
Take care, Bill and Charlotte
Click here: Understanding Proteins, Understanding Parkinson
Dear Mary,
thanks very,very much for your concern. still here. i am a lot
worse, but still breathing. Wish my mindd would go with my body.
can't type much.
love, sophia
Reading you loud and clear. I want to entend a warm welcome
Pettengill family. We're glad you joined us.
Regards,
Pam
--- In shydrager@egroups.com, Ramsey Pettengill <ramagoflo@y...
Hi Carol,
I'm wondering about the NDRF (National Dysautonomia Research
Foundation). MSA seems to fall under their umbrella as well.
http://www.ndrf.org
Love,
Pam
Rose,
Are you a caregiver or a patient.
We are very near each other, I would love to meet you.
Ilive 15 minutes from Miami Valley Hosp.
Love and prayers/
Donna Maggard
Carol
FYI the Sarah Matheson Trust in the UK is funding a research fellowhip in
MSA. I understand that initial studies will be: the history of the disease
(in an attempt to understand the causes), and a trial of a drug early next
year that has been designed to slow the progression of the disease. There is
also a European Study Group, in which I presume the Trust participates (in
fact it may be the European Group that is running the drug trial, sorry if
I'm a bit hazy on this).
Charles Williams
England
Pregnancy Questions And Answers
Q. What is the most common pregnancy craving?
A. For men to be the ones who get pregnant.
xxxxxxxxxxxxx
There was a little old lady standing at a corner. She had both
hands holding her hat on while the wind blew her dress up around
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A dignified southern gentleman came up and said, "Ma'am, you
should be ashamed of yourself, letting your skirt blow around,
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She said, "Look, everything down there is eighty years old; this
hat is brand new!"
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Because we don't have any computers, or programming experience, this
virus works on the honor system.
Please delete all the files from your hard drive and manually forward
this virus to everyone on your mailing list.
Thank you for your cooperation.
xxxxxxxxxxxxx
An American astronaut has an emergency during his re-entry into
earth's atmosphere and his space craft crash-lands in the
Australian bush, way out in the middle of nowhere.
After what seems like an eternity, he wakes up in a bush
clinic, very rustic, dirty, with foul smells and he is bandaged
from head to foot. He sees a very large, somewhat gruff looking
nurse approaching him as he lay in his cot.
"Did I come here to die?" he says with a deep sense of
resignation and fear.
"No," the Aussie nurse replies, "You came here yesterdiaay.
xxxxxxxxxxxxxx
A jeweler called the police station to report a robbery.
"You'll never believe what happened, Sergeant. A truck backed up
to my store, the doors opened and an elephant came out. He
broke my plate glass window, stuck his trunk in, sucked up all
the jewelry and climbed back into the truck. The doors closed
and the truck pulled away."
The desk sergeant said, "Could you tell me, for identification
purposes, whether it was an Indian elephant or an African
elephant?"
"What's the difference?" asked the jeweler. "Well," said the
sergeant, "an African elephant has great big ears and an Indian
elephant has little ears."
"Come to think of it, I couldn't see his ears," said the
jeweler. "He had a stocking over his head."
xxxxxxxxxxxxxxx
MEDICAL
Welcome to the Psychiatric Hotline.
If you are obsessive-compulsive, please press 1 repeatedly.
If you are co-dependent, please ask someone to press 2.
If you have multiple personalities, please press 3, 4, 5 and6.
If you are paranoid-delusional, we know who you are and
what you want. Just stay on the line so we can trace the call.
If you are schizophrenic, listen carefully and a little voice
will tell you which number to press.
If you are manic-depressive, it doesn't matter which number you
press. No one will answer.
xxxxxxxxxxxxxx
How Many Dogs Does It Take To Change A Light Bulb?
Golden Retriever: The sun is shining, the day is young, we've got our
whole lives ahead of us, and you're inside worrying about a stupid
burned-out light bulb?
Border Collie: Just one. And I'll replace any wiring that's not up to
code.
Dachshund: I can't reach the stupid lamp!
Rottweiler: Go Ahead! Make me!
Lab: Oh, me, me!!! Pleeeeeeze let me change the light bulb! Can I?
Can I? Huh?
Malamute: Let the Border collie do it. You can feed me while he's
busy.
Cocker Spaniel: Why change it? I can still pee on the carpet in the
dark.
Hound Dog: ZZZZZZZZZZZZZZZZZZZZZZ
Chihuahua: Yo quiero Taco Bulb.
Pointer: I see it, there it is, right there...
Greyhound: It isn't moving. Who cares?
Australian Shepherd: Put all the light bulbs in a little circle...
Vera,
I love it :0) That was so funny lol
Love Donna
Pam,
Again that work you mention here is the type of work which Bush has said he will
ban. The promising part of the research is this paper:
"Combined fetal neural transplantation and nerve growth factor infusion:
Effects on neurological outcome following brain injury,"
Sinson, G,
Vodd, M, McIntosh, TK. J Neurosurgery 84: 655-662, 1996.
That work is even using fetal cells, which NIH does not want to use. NIH only
wants to use the in vitro fertilization blastocysts which will be destroyed if
not used for research. If the blastocysts are used for research only the
placenta cells will be destroyed, all of the "human" cells will be transplanted
into people and extend their lives. Just as a blood transfusion does today.
The current work will save human cells and put them to use, not destroy them.
Arlen Spector (R-PA) knows this as he has a scientific background and supports
stem cell research strongly as being Pro-Life. If you read back into the
history of blood transfusions, you will find that they were considered by many
clergy to be immoral in early stages (and still is today by some religions). As
many as 50 % of early blood transfusions died (we now know it was because of
blood mismatches), but doctors kept up the research and today it is reasonably
safe. I want a blood transfusion if I need one!
Take care, Bill and Charlotte
http://www.infertility.about.com/health/infertility/library/blnews8282000.htm
Fertility Advocates Endorse Stem Cell Research
Dateline: August 28, 2000
Responding to the recent issuance of the United
States NIH
Guidelines on the use of stem cells in research,
the American
Infertility Association has made official their
support for the
guidelines and use of stem cells in general.
The American Infertility Association, a fertility
patient advocacy
group based in New York, encourages couples who
currently have
leftover embryos from IVF (in-vitro
fertilization) cycles to "consider
making these embryos available in a way that will
bring better health
to everyone and perhaps even help more infertile
couples to be able
to have a baby in the years ahead."
Typically, using the IVF procedure to conceive
results in creating
more embryos than are necessary for transferring
back into the
woman's uterus. Until now, patients' options for
dealing with the
unused embryos have been to either donate them to
other infertile
couples through a process called "embryo
adoption", pay ongoing
fees for keeping the embryos stored at a lab, or
disposing of them.
Stem cell research, controversial due to both its
relation to cloning
technology and its moral/ethical dilemmas, is
seen as the next great
step forward in regards to the treatment of a
number of serious
health conditions and diseases.
Pamela Madsen, executive director of the AIA, and
others state that
the new guidelines offer fertility patients
another altruistic option for
their unused embryos.
PRNewswire story
For more information, see the NIH Response &
Guidelines
Return to Latest Infertility News Index
http://www.news.wisc.edu/emediakit/
It might be worth contacting this researcher to ask about whether he's
working on something that might help MSA.
http://www.mayo.edu/research/vuk_lab/
http://www.mayo.edu/research/people/1/16686_vuk-pavlovic/
Regards,
Pam
Jim,
We did not get the mattress from a medical supply place, we got it from a
mattress outlet store - they only sell mattresses. Don't tell them you want a
hospital bed mattress, tell them you want an adjustable bed mattress (samr
thing). Do make sure it is the longer (80 inch or Twin XL) mattress.
Try these:
http://www.mattress.com/
Note when I put your Zipcode in the Serta store finder it came up with Hawaii
and California stores:
http://www.serta.com/finding/
Did you say you had a Kmart there - they may be able to help you with a special
order.
Try the other mattress companies or any mattress stores on Guam.
Hope this helps, Bill and Charlotte
From: http://www.usatoday.com/life/health/doctor/lhdoc023.htm
To find a cure(for MSA), the cause must first be identified. That is the
primary focus
for (Dr. David) Robertson and his research team at Vanderbilt. Earlier
this year, they
made a promising discovery. "An important hint about the cause has been
the discovery of deposits of (the protein) synuclein in the brain," he
offers.
"If we can learn why this protein is laid down abnormally in MSA, we
will
probably uncover the cause of the disease."
Robertson is optimistic. "There is enormous medical progress being made
in neurological diseases," he says. "Quite honestly, I think in five
years
we're going to know the cause of Shy-Drager(MSA), plus Alzheimer's, and
Parkinson's."
To support Dr. Robertson's work:
Donations for Multiple System Atrophy or Shy-Drager
syndrome
research can be sent to:
Vanderbilt Shy-Drager Research Fund
Vanderbilt University Medical Center
AA-3228 Medical Center North
Nashville, TN 37232-2195
http://www.mc.vanderbilt.edu/gcrc/adc/sdfund.html
This research lab is also studying alpha-synuclein and is focused on all
neurodegenerative diseases including MSA
http://www.med.upenn.edu/cndr/overview.html#table
http://www.med.upenn.edu/cndr/
http://www.med.upenn.edu/cndr/overview.html
http://www.med.upenn.edu/cndr/help.html
Regards,
Pam
Understanding Proteins, Understanding Parkinson Disease (PD)
by Abraham Lieberman MD Medical Director of the National Parkinson
Foundation
http://www.parkinson.org/protein.htm
Tau and a-Synuclein Dysfunction and Aberrant Aggregates Define Distinct
Neurodegenerative Diseases
Benoit I. Giasson, Christina A. Wilson, John Q. Trojanowski, and
Virginia M.-Y Lee
http://www.med.upenn.edu/cndr/research1/tausyn/tausyn.htm
World Alzheimer Congress 2000
Virtual Conference
July 9-13 2000
Synuclein Update - reported by Benjamin Wolozin, Loyola University
Medical Center
http://www.alzforum.org/members/forums/world/Synuclein.html
This is one lab which is currently working on research into the protein
alpha-synuclein that is now believed to have some role in the underlying
cause of Multiple System Atrophy.
http://www.life.uiuc.edu/clayton/default.html
It lists Dr. Julia George as the leader of the Synuclein research group:
Julia M. George, Ph.D. (leader of Synuclein group)
j-george@...
217-244-4525, fax 217-244-1648
Perhaps someone would like to contact her to find out exactly what the
focus of her research is and if it might have a direct impact on
Multiple System Atrophy.
Regards,
Pam
http://www.life.uiuc.edu/clayton/george/default.html
1: J Neurosci Res 1999 Oct 1;58(1):120-9
Synucleins in synaptic plasticity and neurodegenerative disorders.
Clayton DF, George JM
Department of Cell and Structural Biology, University of Illinois,
Urbana, USA.
Synucleins are small highly conserved proteins in vertebrates,
especially
abundant in neurons and typically enriched at presynaptic terminals.
Three genes
in humans produce closely related synuclein proteins, all of which share
a large
amphipathic domain capable of reversible binding to lipid vesicles.
Alpha
synuclein has been specifically implicated in neurodegenerative disease.
Two
point mutations are genetically linked to familial Parkinson's disease,
and
alpha synuclein appears to form the major fibrillary component of Lewy
bodies.
Alpha synuclein also contributes to the intracellular inclusions of
multiple
system atrophy, and a fragment has been found in senile plaques in
Alzheimer's
disease. Although their normal cellular functions are unknown, several
observations suggest the synucleins may serve to integrate presynaptic
signaling
and membrane trafficking. Alpha synuclein has been identified as a
potent and
selective inhibitor of phospholipase D2, which produces phosphatidic
acid (to
which synuclein binds) and is believed to function in the partitioning
of
membranes between the cell surface and intracellular stores. We outline
a
hypothesis whereby synuclein supports localized, experience-dependent
turnover
of synaptic membranes. Such a process may be important for lifelong
learning and
memory functions and may be especially vulnerable to disruption in
aging-associated neurodegenerative diseases. Copyright 1999 Wiley-Liss,
Inc.
Pam here is another site that I have used. Barb
http://www.annieshomepage.com/cope.html
There are other helpful things on that web. [INLINE] Here is a bit of sunshine to start the day.
Glad you joined us! we live about 3 miles north of Indianapolis in Goshen
and in a retirement center called Greencroft . RALPH is in the nursing home
and i live out in one of the courts Has sds over 16 years but the Drs did
not figure it out
Yes we were in Indianapolis at the University Hospital back in the 80,s
at that time he was having chest pains and dizziness . but they gave up
said they did not know what it was but knew it was not his heart.
he is complete care now.
Some one ask about smell his went years ago . He can not read or watch t.v.
as his eyes will go blury so he says . is only up 2 hours at a time and
gets very confused . and voice is so quite we have had all kinds of therepy
and to no good
SO ENJOY !! you sister while the going is good .
write again and keep us informed we are here for you and your family
Love to all Blanche
Dawn I mean to write we are 3 hour s drive north of you all most to
Michigan line.
Blanche
Jerri:
Please let me know how Bob does on the Mirapex.
Thanks Vera
A couple of months ago I asked members of the list whether they knew if hard
/ extra firm mattresses were available for hospital beds. Bill Werre among
others mentioned he had purchased a hard mattress from Sealy (if memory
serves me right). Based on the information I began to try to track down a
supplier on Guam. So far the two medical supply houses that I have
contacted, including the one that supplies Peg's hospital bed through
Medicare / Medicaid, have indicated that it is unlikely they will be able to
locate such a mattress and get it to Guam. While I have not totally given
up hope yet, I am asking whether or not someone may know of a supplier in
the States that has such a mattress and would be willing to ship to Guam?
Peg and Jim from Guam
********************************
*** 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.
********************************
Dawn,
At this point, they only have a suspected cure for Parkinson's. They still do not understand the mechanism for MSA. They need to know the exact cell and the genetic code and/or the chemical process for reproducing the cell, in order to cure the disorder. They still do not know this for MSA. They do have the chemical process for turning pluripotent stem cells into dopamine producing neurons, which they hope will cure Parkinson's in people as it has in mice and monkeys.
If you can find a reputable company that takes and stores the eggs for you, that could be an option. You must realize however, that any technique developed in another country is considered experimental in the USA until NIH has approved it. Bush has announced that he will ban the research at NIH, and that would stop most insurance companies in the USA from paying for the treatment. Therefore you would have to pay for all of the work yourselves.
One company has already announced that it is moving it's human stem cell research to Scotland, but will keep it's animal research here. If Bush becomes our next president and goes ahead with the NIH ban, my guess is that you will see a large number of top molecular biologists move to other countries. This could also cause a problem with teaching new researchers in this field as the top people would be in other countries.
A ban on this type of research will also cloud other research like the cancer cure for the young female cancer patient whose parents decided to have another child born and used his blood to cure her. She is now in complete remission, but the cells that cured her were cloned from genetically altered cells in the blastocyst that became her brother, once it was placed in the mother's womb. The brother is alive and well, as well as his sister.
You may want to write a letter to your Senators and ask them about someone at NIH who could advise you on this matter.
Take care, Bill and Charlotte Werre
Hello Dawn,
Welcome to our group. You are right that many people on this list
are smart and knowledgable and we certainy have a good time. We also
share our trials, tribulations and triumphs, and no question (or
comment) is too crazy.
Many of us believe that stem cell research is the best hope for MSA.
To the best of my knowledge, there is no one currrently working in
that field directly on MSA. Part of the reason for this is that MSA
affects multiple areas of the brain, so the treatment using stem
cells will be more challenging. They first have to get it right for
folks with Parkinsons, for instance, before there will be
applicability to MSA. Even at that, they may only help certain
aspects of MSA, at least in the short run.
My husband and I are also looking at the idea of funding research
into the causes and possible treatments of MSA. The only
organization the I know of currently that is capable of directing
funds appropriately is NORD (National Organization of Rare
Diseases). Our family is about to fund some specific (non stem cell)
research through my husband's doctor here in Boston, but we would
like to do more. I plan to contact NORD specifically about how to go
about this, and I will be happy to pass the information along to the
list when I receive it.
If you would like to contact me privately about funding research and
what I have already learned, please feel free to e-mail me directly
at cblanger@....
By the way, my husband Rob, now age 54, was diagnosed alomst 3 years
ago with Shy-Drager Syndrome/Multiple System Atrophy. He is doing
fairly well, but he is definitely losing ground in small steps. We
live in Lexington, Massachusetts, and Rob sees Dr. Roy Freeman at
Beth Israel Deaconess Hospital in Boston, with whom we are very
pleased.
Happy Thanksgiving,
Carol & Rob
--- In shydrager@egroups.com, "Dawn E. Morley" <dawnmorley@m...
just been observing trying to see how it works and get the drift of
it. I still don't know if I get it but this e-mail will be a test.
I am 41 and my 43 year old sister, Celeste, was diagnosed with MSA
this year. I can tell by watching the last couple of weeks that the
people on this website are pretty smart, knowledgeable and also fun.
I hope to get to know you.
hope for people with MSA and Parkinsons is this stem cell research.
My family and I have discussed the possibility of trying to help in
some way the research effort towards treatments and potential cures
for MSA. If we started a fundraising effort we would like to put the
monies towards the best possible effort. So my two questions are:
be applied. My sister Celeste has three full sisters in their 40's
and we have actually asked ourselves if we should be having our eggs
harvested and frozen so that we could help my sister some years down
the road if we needed to?
thing and don't know a lot about it. I guess the only way I will
find out is to ask. Hope everybody had a nice Thanksgiving. I
certainly did.
Hi everyone,
My name is Dawn. I joined this website a couple weeks ago and have just been observing trying to see how it works and get the drift of it. I still don't know if I get it but this e-mail will be a test. I am 41 and my 43 year old sister, Celeste, was diagnosed with MSA this year. I can tell by watching the last couple of weeks that the people on this website are pretty smart, knowledgeable and also fun. I hope to get to know you.
I have a couple of questions. It seems from reading that the best hope for people with MSA and Parkinsons is this stem cell research. My family and I have discussed the possibility of trying to help in some way the research effort towards treatments and potential cures for MSA. If we started a fundraising effort we would like to put the monies towards the best possible effort. So my two questions are:
1. What researchers, if any, in the US or around the world are working on stem cell research as it applies to MSA?
2. Is there enough information yet to know how this science might be applied. My sister Celeste has three full sisters in their 40's and we have actually asked ourselves if we should be having our eggs harvested and frozen so that we could help my sister some years down the road if we needed to?
I hope my questions don't sound silly. I am new to this whole thing and don't know a lot about it. I guess the only way I will find out is to ask. Hope everybody had a nice Thanksgiving. I certainly did.
Just checking to see if I got Mom on this right!
Maryjane
Happy Thanksgiving. I was a member of this list, and spoke of my
father, Ramsey Pettengill. I unsubscribed yesterday and will be re-
subscribing with my new e-mail address.(shortly!)
I was waiting for the opportunity to visit my Mom, Dad and sister to
sign them up on this list. I told you all about them moving into my
sister's lovely farmhouse, etc.
Up until yesterday, I was forwarding messages to them, and printing
and saving them.
You all have been so helpful, and knowledgable. I'm very grateful,
and happy that my folks; Ramsey and Florence will be in contact with
you via this list.
I'm on their computer, and in essence, am introducing them to you.
My Dad has been diagnosed with MSA/Shy Drager/Parkinsonism....and my
Mom and sister, Susan are absolutely wonderful!!
Best Wishes for a Warm Thanksgiving.
Maryjane Pettengill-Bianiarz
Hi Vera: Bob has balance & movement problems.He can't walk without the
walker.Sinemet didn't help,but hopefully this will.Thanks for the reply.
regards, jerrie
Hello everyone:
My pastor called today, he wanted to know if Fred & I would talk
about Freds illness in front of church in a few weeks.What it has
done to our life and how we have handled it,and how we can be with
peace with God with all of this in our life. I told him that Fred
wouldn't be able to say much, because of his voice ,and it would be
mostly me doing the talking. He said that was ok. So I told him we
would do it. I don't know the reason God wants us to speak in front
of the church, I do know he has a sense of humor, because when I get
in front of a group of people to speak I start laughing, I always
have, but I feel this is a test of some kind and he knows the reason
for it. Maybe it's just to help other learn about this illness, I
don't know, But maybe something good will come out it. I really have
to think about what I want to say,I want it to help us all in some
way.
Always
Vera
You mean they have music in the elevator?
Oh no! my hearing is gone.
{{{hugs}}}}
Vera
Trevada:
It was a good love story movie, just a sad ending. Nothing like a
good movie that makes you feel things. Maybe someday you"ll come
across it. Then you'll see why your poem reminds me of this movie.
Take care
Vera
Kt:
You may not post every often, but when you do WOW! this was lovely.
I did my crying & Life didn't go away, I just over looked it for a
day, but now I;m smiling again. I hope you are to.
hugs
Vera
Jerri:
Fred has been on Mirapex 1.5mg 1/2 three times a day for over a year
along with sinemet cr 50/200.He first started it because of his leg
was jerking in his sleep. The doctor took him off of it a few weeks
ago because he didn't think that it was doing him any good.He told me
just to stop it. I later found out that he should of gone off of it a
little at a time. The same way he had started it. So Fred had some
problems going off it all at once. I asked questions of this group
about it and they said it should be done slowly, so I then cut back
slowly with it, but that hasn't helped either,he has been having
spasm in the legs again. I called the doctor yesterday and he said to
start him back on it again, but this time cut it down to 1/4 x's 3 a
day. If this doesn't help then I'm to call him.
I don"t know why Bob is to be on it, but for Fred the jerking leg did
stop until now.Just remember if he does go on it and the doctor takes
him off, cut him off of it slowly.
Hope this help
Vera
What a delightful way to end the day.
With a hoop and a holler and a big HOORAY!!!!!!!!
Goodnight all. Have a blessed Thanksgiving.
Barb. In a very wet Texas, again. [INLINE]
My Dad was presrcibed mirapex and it made his symptoms significantly worse.
I hope you have better luck. He's now taking sinemet and requip and seems to
be maintaining but not improving, Have a nice Thanksgiving.
Danielle in KY
please remove me from the list. Thank-you Patti terana3@...
Barbara Smith,
The message you referred to was an error. Sorry, Barb Selleck had put a huggy
bear in her message and I forgot to remove it. I thought it was cute. Several
of us put little moving .gif's in our emails to liven them up. It was my fault
for passing that message on without deleting the other two messages which were
attached as replies.
Unfortunately AOL does not handle .gif files well. They often appear as
attachments to AOL users or sometimes they show up as oddball characters. But,
AOL users often send us blank messages with three oddball characters, which
other AOL users can see as a message, but no one else can read. AOL does not
consider other ISP's when they set up their software. A friend uses AOL and
another DSL ISP. She loaded AOL 6.0 and it totally bombed her DSL line. She
will have to reformat her entire disk and reload all her software.
If you have your email program set to receive html email, there should be no
problem. Most of us that send the little angels, teddy bears and other .gif
files try to keep them under 15k in size. I don't put them in every email, but
do maybe 10-15% of the time to brighten up the email or to accent something I am
saying. Much of the stationary people use in html format take more than 25 k to
load.
This email should not have a file attached. If it does, let me know by
forwarding it back to me, so I can see it. I looked at several of my messages
on the egroups site and most did not have attachments.
Take care, Bill and Charlotte
Hi everyone: Bob's neuro just prescribed mirapex 2x per day(0.25mg). Is
anyone else taking it..& is it helping? He was on sinemet for 3 months,
but it didn't help movement. Hope everyone has a nice Thanksgiving!
Regards, Jerrie p.s. sorry about all the confusion we Floridians
caused!!
Did you write that yourself. Sure liked it.
Ann from Soddy,TN
that was lovely ...
thank you for sharing ...
cheers
sheila
Hi Vera,
You're welcome! I'm glad you're feeling better.
Shopping always helps me too.
I've never seen that movie you were talking about, but it sounds like a
good one. I just love a good love story.
Happy Thanksgiving!!!!
Trevada
Hi Everyone:)
This isn't the happiest prose in the world but it is what I was
feeling at 4 am when I couldn't sleep...
I hope that Thanksgiving brings joy to all of you, I haven't posted
much since I joined but have appreciated greatly all the messages of
hope and information that are shared.
Cry...
I want things to be different.
I want to make a difference.
I want to do something to make my friends' lives better.
I want to be there for them
and walk through their pain with them.
I want to take their pain away.
I want my own pain to dissipate.
I want to be strong and compassionate.
I want to touch the centre of the sorrow in this world and understand
it's source and purpose more fully.
I want the world to stop moving so fast.
I want winter to take it's time unfolding,
and stay longer and be colder.
I want to dance.
I want to see the world in colour.
I want to feel more deeply...
To love with more grace...
To change that which I am responsible for.
I want to reach my full potential.
I want to see others reach theirs.
I want people to stop and notice themselves
and others around them.
I want to stop the hurt.
I want to be able to look into a child's eyes
and take away the pain.
I want to be known for my courage.
I want to enCOURAGE others.
I don't want to ache anymore.
I want to celebrate the ache, and pain, and hurt, and sorrow.
I want to learn, and grow, and feel.
I want people to stop dying.
I want tomorrow to come quickly.
I want to be brave and smile.
I want to walk with my head held high.
I want to go that extra mile.
...But sometimes all you can do is cry.
"And just when it seems you will never smile again,
life comes back."
Love,
KT
We get the syndicated health talk show here in Canada hosted by Dr. Gabe
Mirkin. I believe he broadcasts out of New York or somewhere in the
Eastern US. Oddly enough I was listening to that show last night on the
way home from work, ordinarily I listen to music and had actually never
listened to his show before. At the top of the show, Dr. Mirkin talked
for about 10 minutes about playwright Eugene O'Neill who passed away
about 50 years ago believing he had succumbed to the effects of
alcoholism. Now 50 years later doctors in Boston have learned that he
in fact had late onset cerebellar atrophy. I'd read about this before
but it was very interesting to hear it being talked about as an
editorial lead in to Dr. Mirkin's show.
I presume that show is carried all over North America so alot of people
now have heard of cerebellar atrophy.
It says on the website http://www.drmirkin.com that you can listen to
archived shows at any time. I followed the link to this website last
night but there seemed to only be one show I could listen to and it
wasn't the one I heard last night.
http://talk.broadcastamerica.com/stations/moreinfo/bio.phtml/Stations/The%20Dr.%\
20Gabe%20Mirkin%20Show/bio?call=ts04029
Perhaps today it will be updated to be the show I heard last night.
Regards,
Pam
Hi Nancy:
I really, really should be running , it's 8:45am and I have a play to
go see my granddaughter in at 10:00am and I'm not even dress yet, but
I'll make it.
Just wanted to say I'm glad you had a good day also. I doesn't the
heart wonder's when we can go have a little fun.
God Bless you Nancy and have another good day today.
Love Vera
Hello Mary:
Sorry last night when I was going over my reading, I some how missed
your posting to me.
I know it's hard to write each other, as much as we would like. Life
doesn't alway give us the time we need to do all the things we would
like. I think of so many of you on this list so often, much more then
I write.
I hope that your getting alot of your reading done and that Warren is
doing well. I never have gotten to go to lunch with Dolly, she has a
lot of work right now with her mother. She just had to put her in a
home , but I am getting a break today going to see my granddaughter
in a play at school. That alway seems to make things better, just
being with the kids. I get them for the month during the week
starting this next week. I'll try to get them to help me in the
garden , they enjoy that and so do I. Had them help last time they
were here. We did the blubs, not sure where they all will come up or
if they will, but we had a good time that day.
I need to run now. Have a good holiday.
Hugs Vera
Sending this timely explanation of the benefits of old age.
In a hostage situation you are likely to be released first.
It's harder and harder for sexual harassment charges to stick.
Kidnappers are not very interested in you.
No one expects you to run into a burning building.
People call at 9 p.m. and ask, "Did I wake you?"
People no longer view you as a hypochondriac.
There's nothing left to learn the hard way.
Things you buy now won't wear out.
You buy a compass for the dash of your car.
You can eat dinner at 4:00 You can live without sex but not without glasses.
You can't remember the last time you laid on the floor to watch TV.
You consider coffee one of the most important things in life.
You constantly talk about the price of gasoline.
You enjoy hearing about other people's operations.
You get into a heated argument about pension plans.
You got cable for the weather channel.
You no longer think of speed limits as a challenge.
You quit trying to hold your stomach in, no matter who walks into the
room.
You sing along with the elevator music.
You talk about "good grass" and you're referring to someone's lawn.
Your arms are almost too short to read the newspaper.
Your back goes out more than you do.
Your ears are hairier than your head.
Your eyes won't get much worse.
Your investment in health insurance is finally beginning to pay off.
Your joints are more accurate than the National Weather Service.
Your secrets are safe with your friends because they can't remember
them either.
Your supply of brain cells is finally down to a manageable size.
My dad also has arthritis; I never thought it was related because his sister
had severe problems with arthritis (replace several joints).
Rose
Morning!
COFFEE- mail order too for those snow homebound
http://www.starbucks.com/
Vera,
I went shopping too:)! After PT and OT, the assistant and I went to
Express. There were tons of brightly colored sweaters and tops! Hot
pink, red, purple,
orange, and blues. After that we came home and I slept.
So glad u and Fred got out to do something that you wanted to do. Nice
to hear.
nancy
Hi Nancy:
I guess by now you can tell that I'm feeling better. I hate myself
when I get down like that and I hate it when I get upset by things
that hurt my feeling, when I know it's only the illness that is doing
it to Fred and not him really. I've got to work on that still. Thanks
for understanding.
hugs Vera
Donna:
I'd let you use my purse to hit your doctor, but mine weights about
30lbs. I'm sure it would kill him, and we just want to change his
mine.
Hang in there, something good has to come your way.
love Vera
Trevada:
Once again you found a poem that said just the right words. It
reminds me of a story about crying and tears. It was in the movie "A
stranger among us". Melanie Griffith plays a undercover cop in it and
goes into an Hasidic Jewish Community. There is a Torah Student there
that she falls in love . He see's her crying one day and tells her
something about God counting all the tears a women shed or something
like that. I can't remember it all, but everytime I do cry, after I
always wonder if God is counting my tears.
Maybe you know the story. It's a beautiful one anyway and this poem
is so much like it.
Thank you for sending it again.
Vera
Barb:
I don;t see you online anymore, so I guess you must of went to bed. I
wanted to know how your sleep study went? Please let me know.
{{hugs}}}
Vera
Donna:
You said that you would give me the whole day full of sunshine if
you could. Believe me you did. You picked me up when I was down and
for that I want to thank you. I guess I just needed a good cry to let
out all the stress, and It has done wonder for me. Next time I need
it, I'll get out my movie of the "Color Purple" and cry at the end of
it, like I always do, because she has her children back. Life wasn't
ever easy for her, but she kept going. At times I forget to do that,
but that's what life is all about, we got to keep going.
{{hugs}}
Vera
Linda in Canada,
Yes, I experienced that phenomenon late this summer. I had a case of
"sniffles" which came out o f nowhere.....not really a cold, but what I
thought was probably an allergy. Never having allergies before, I was
baffled. Soon I began to notice that nothing had taste and I couldn't smell
a thing!! I mentioned it to the medic I was seeing for sleep study (he is
also an allergist) and he could not give a definite reason and said those
sensations may or may not return. Hard to tell.
THe sniffles eventually cleared up (Claritin helped) almost entirely and I
have regained some taste and
smell but not as much as before.
Barb Pond (vA)
Hi everyone:
Really sorry about feeling sorry for myself yesterday. I was down, so
I did what ever red blood woman would do, I went shopping. That
helped. Took Fred with me and put him in the wc, put a shopping cart
in front of him and he held it & I got behind his wc and push both
down the lanes.I told him we were like a train going down the lanes.
Got some of the Christmas shopping done.I think it did us both some
good. I think he was also down and said thing he didn't mean, things
I let hurt me and I shouldn't of. After we got home I had some e mail
from Barbara in Texas. She said what I needed to hear. Then getting
on here now and reading all the posting from you, I know that we all
have our ups & downs. I'll try not to let it get the best of me
again. Thanks for the support, but I still could go for that cup of
chocolate raspberry coffee , oh and the brownies too .
hugs
Vera
You're welcome.
Happy Thanksgiving to you and all of our members.
Trevada
;-]
cheers
sheila
Our county in Tennessee is not using the punch card any longer, I guess
it was to complicated for these hicks in the hills.
Ann from Soddy,TN
That is so beautiful, thank you.
Ann from Soddy,TN
Linda:
I've had my share of wierd smell and taste sensations.
Not losing smells but finding them! I went through a period a couple months
ago when I was having olefactory hallucinations. I was smelling things that
nobody else did -- like steak cooking on a charcoal grill while walking
through downtown Washington. After a couple weeks it stopped as mysteriously
as it started.
As for taste, things aren't losing flavor so much as I don't care for the
things I used to. I used to be a dessert fanatic, especially an ice
creram-aholic. I could put away a pint of Haagen Daz after dinner and not
think twice about it. Now desserts, even ice cream, hold no attraction for
me. (Probably a good thing since I can't run 6 miles a day any more either.)
I used to love eating but eating generally does not interest me any more. I
really have to force myself to eat to keep my weight from falling. I dropped
10 pounds (to 130) and have struggled to put 3 back and keep them.
Good luck.
John Moller... trying not to waste away in the shadow of the U.S. capital
Linda,
Rob has COMPLETELY lost his sense of smell. It actually happened
over a period of months, if not years. I remember a skunk incident
about 7 years ago, where the whole family could smell it strongly but
he couldn't smell it at all. He was diagnosed with MSA almost 3
years ago.
He still enjoys food, and says he can taste it although not as well
as before. He loves ice cream and can easily finish off 2 or 3 pints
of Ben and Jerry's a week. (His current favorite is Dilbert, Totally
Nuts -- vanilla with lots and lots of various knids of nuts.)
Just recently he has had a couple of instances of olfactory
hallucinations, where he smells something that is not there. These
have been very fleeting, and are a new happening which I plan to
mention to the doctor when we see him next week.
Carol & Rob (Getting ready to smell the turkey cooking...)
Pam,
That sounds a lot like USA voting. But how do you mark your ballots? Where I
live, we use voting machines, which must agree with the total votes - it is
impossible to vote for two people for the same office. The machines are sealed
before they leave the elections board and an official from each party verifies
that all counters are set to zero before they are locked. They can not be
changed until the counts are certified as final (by a member of each party
again. The only way it could go wrong is if a person could not read and there
are provisions for that also, also for blind or handicapped. Charlotte uses an
absentee ballot and since she can not mark it, I have to sign an affidavit that
I am voting it the way she wants me to mark it for her. She then has to sign
(scrawl) that I voted for her and that she knows I voted the way she wanted me
to vote. :o) of course I then sign as a witness to her signature.
However, since we have supported many Republicans in the past, if our vote was
challanged it would probably be by Democrats :o) We always vote the person,
not the party or label. In this election we were voting against someone rather
than for someone. :o) I just got an email from the Republican National
Committee thanking me for my support and asking for a donation :o)
Good Luck! Under the Bush plan for prescriptions Charlotte would pay about
$2000 more than under the Gore plan (per year). I might break even. When you
add the ban on stem cell research, Bush is really out to get people with brain
disorders using a lot of medicines. Hopefully enough of his own party will
override him on the ban.
Take care, Bill and Charlotte
Jill, soreness in the arm is common with MSA patients. At first, we thought
that maybe the family had strained Katie's arms by getting her up with her
arms; x-rays and an examination showed that her shoulder was not strained.
Theraphy has helped some; so has raising