My blog

http://www.umdnj.edu/umcweb/hstate/wntr00/pulse/pulse5.htm

Bill, Thanks. Don't know how we could make it without you!
Our regards to you and Charlotte. Pat

Behav Neurol 2000;12(1,2):11-27
Single photon emission tomography imaging in parkinsonian disorders: a
review.
Acton PD, Mozley PD.
Department of Radiology, University of Pennsylvania, Philadelphia, PA, USA.
Parkinsonian symptoms are associated with a number of neurodegenerative
disorders, such as Parkinson's disease, multiple system atrophy and
progressive supranuclear palsy. Pathological evidence has shown clearly that
these disorders are associated with a loss of neurons, particularly in the
nigrostriatal dopaminergic pathway. Positron emission tomography (PET) and
single photon emission tomography (SPECT) now are able to visualise and
quantify changes in cerebral blood flow, glucose metabolism, and
dopaminergic function produced by parkinsonian disorders. Both PET and SPECT
have become important tools in the differential diagnosis of these diseases,
and may have sufficient sensitivity to detect neuronal changes before the
onset of clinical symptoms. Imaging is now being utilised to elucidate the
genetic contribution to Parkinson's disease, and in longitudinal studies to
assess the efficacy and mode of action of neuroprotective drug and surgical
treatments. This review summarises recent applications of SPECT imaging in
the study of parkinsonian disorders, with particular reference to the
increasing role it is playing in the understanding, diagnosis and management
of these diseases.

Jeff,
Are you still on the list? If so where did you move your webpage?
Take care, Bill and Charlotte

Pat,

On the Amantadine, we open the capsule and empty it into a small glass with the other meds, add water and pour into the PEG. Goes in fairly well, then we flush both the glass and tube with more water - 8-10 ounces.

Take care, Bill and Charlotte

======================

Judy. I am sorry that I cannot help you with your search. However, I just
wanted to reiterate the mantra of this list: rapid progress of symptoms
often signals an infection. Good luck Debbie

Hi All, Al came home from the hospital Friday. He was so glad to get home,
after four weeks, so was I happy to have him home! The aneurysm turned out to
be very small. The DR said it was nothing to worry about for a long time.
Thank goodness! The J-tube turned into major surgery. He will have the
staples for about three more weeks. We like being able to do the tube feeding
thru out the night with the pump. It takes twelve hours for three cans of
Osmolite and one can of water. Also drinks three cans during the day plus
what he can eat. He weighed 138 LB. when he left the hospital and he is 6 FT.
2 IN. So, we got to put some meat on those bones! Bill, we are
crushing the meds now and putting them in the tube, but I wondered about the
Amantadine. Should it be crushed? Is it a time released med? I have continued
to give it by mouth, because I wasn't sure about it. It is going to be a slow
process, but I can see improvement. Keeps me hopping, but you all know about
that! Thanks to everyone for your thoughts and prayers. Hugs, Pat

Hello,
Does anyone remember the name of the woman that lost her husband to
Shydrager maybe almost two years ago. They lived in Farmington
Hills, MI, which is not to far from me. I would really like to speak
with her.
I ran into a letter she sent to the group quite some time ago, but
did not save it. However, I too am seeing Dr. Sid Gilman for my
husband, diagnosed with MSA. She had many good things to say about
hospice. In fact, the local newspaper did an article on the family
and the help hospice provided.
I hope this is enough information to help one of you remember the
name.
Gordon, my husband, seems to be progressing fairly fast right now.
Just need to talk to her.
Thanks for any help.
Judy Nesler
jenesler@...

Hi all,
More polls show support for stem cell research. :o) Those Aussies beat
us again :o) Sorry Pam they didn't do Canada.

Hi all,
Researcher leaving USA, one less to work on MSA cure here.
Take care, Bill and Charlotte

Gloria,
Welcome to the list, sorry that you need to be here. We use the generic form
of Colace - a stool softener (ducsolate sodium). It seems to work well for
us. Many of us are in the same situation as you. At least I have the
advantage of being able to lift my wife.
Take care, Bill and Charlotte
=============================================

Question?
Exactly what are UTI strips?
Are they for use just by males or can they be used by women also?
Thanks Barb in VA

Hi to everyone'
I just subscribed to shydrager thanks to Pam Bower's persistence. My 68
year old spouse was diagnosed with MSA in spring of 2000 at Mayo Clinic
in Rochester,MN. He had been diagnosed with Parkinsons in May of '96.
John has all 3 forms of MSA - Shy-Drager, OPCA, and SND. Right now I an
his primary caregiver with help we pay for for 1 hour on T & Th from
CHEARS. My husband has a foley now for 3 weeks after being in the
hospital with a staph infection in the bladder. He has a major problem
with moving food through his digestive system,especially elimination.
Fatigue is a major issue as well as low BP and inconsistent pulse. He
uses a walker in the house and a wheelchair when he leaves the house 1
or 2x a week.
John's main problem is elimination. Does anyone relate? Any advise?
John needs 2 enemas a week,plus several suppositories along with a
prescription medicine-laculose. The med makes him feel gassy, but we
have tried others which work for a while then become ineffective.
Thanks for listening. Gloria

LA Louise mentions "stubborn MSAers" with one a.m. bedtimes. Is this common
amongst MSAers? My dad has always been a night owl, but now he really stays
up late. He falls asleep in his chair all day and all night, but when 10,
11, 12 p.m. arrive he won't go to bed. It's definitely not that he has
gotten too much sleep during the day as he is very tired. Is this a symptom
of the disease or is he just a stubborn old codger?
Cindy

WARNING!!! We have another Virus being sent through the list. Do NOT open.
Do NOT run these. Delete the document, then delete it from the 'deleted'
folder.
Regards,
=jbf=
John B. Fisher

Linda,

BOY, talk about comparing apples and oranges. I hope doctors never distort statistics on a cure in that manner. Actually in 1998 there were almost 31,000 deaths due to guns in the USA :o) don't deaths on purpose count? I could not find the 1500 accidental deaths. When you figure that cars only account for about 30% more deaths and the amount of use cars get compared to guns - that is scarey.

Take care, Bill and Charlotte

============================================

Number of physicians in the US: 700,000
Accidental deaths caused by physicians per year: 120,000
Accidental deaths per physician: 0.171
(U.S. Dept. of Health & Human Services)
Number of gun owners in the US: 80,000,000
Number of accidental gun deaths per year: 1,500
Accidental deaths per gun owner: 0.0000188
Statistically, doctors are about 9,000 times more dangerous than gun
owners.
Not everyone has a gun, but almost everyone has at least one doctor.

Pam,
I posted a note on Friday that tomorrow (1 PM) there is a big rally at the
Capitol in Washington, DC. Unfortunately, I can not attend as Charlotte is
beat by the afternoon and tomorrow is not a day that I have a sitter.
There will be a Congressional Hearing before the Criminal Justice, Drug
Policy and Human Resources Subcommittee chaired by Representative Mark Souder
(R-IN) at 2 PM. Most of the witnesses will testify in opposition to
embryonic stem cell research. However, Dr. Robert Goldstein, Chief Scientific
Officer for the Juvenile Diabetes Research Foundation (JDRF) and Parkinson's
Action Network (PAN) President Joan Samuelson are scheduled to testify in
favor of embryonic stem cell research. It is very important that we have as
many patients as possible at the hearing to show the public's support for
this research! As I said in an earlier post there is little handicapped
parking in that area.
Here are members of that committee - if you recognize any of them as your
Congressperson - let them know that you expect a FAIR hearing with both sides
represented
Criminal Justice, Drug Policy and Human Resources
Mark E. Souder IN, Chairman
Benjamin A. Gilman, IN (Vice Chairman) Elijah E. Cummings, MD (Ranking
Member)
Ileana Ros-Lehtinen, FL Rod R. Blagojevich, IL
John L. Mica, FL Bernard Sanders, VT
Bob Barr, GA Danny K. Davis, IL
Dan Miller, FL Jim Turner, TX
Doug Ose, CA Thomas H. Allen, ME
Jo Ann Davis, VA Janice D. Schakowsky,
IL
Dave Weldon, FL

Hi,
The hearing tomorrow of the Criminal Justice, Drug Policy and Human
Resources Subcommittee chaired by Representative Mark Souder (R-IN) is
stacked with opponents of stem cell research from what we hear. Only
two people, Dr. Robert Goldstein, Chief Scientific Officer for the
Juvenile Diabetes Research Foundation (JDRF) and Parkinson's Action
Network (PAN) President Joan Samuelson are scheduled to testify in favor
of embryonic stem cell research.
Yet, when I called the Capitol about parking for handicapped - they tell
me to use the Metro because there are only about three places in that
area and each has only a couple of handicapped spaces. Metro means a
huge problem for me, Charlotte and the wheelchair, PEG tube stuff, etc.
Since Representative Souder is the Chair of that committee, it is his
responsibility to make sure the testimony is fair and open. If
handicapped can not get there, I don't consider it open testimony - do
you?
If you are in that district (near Fort Wayne) ask his office about the
fairness to MSA patients. Fort Wayne office is (219) 424-3041 Email
is <souder@...
Take care, Bill and Charlotte

JUL 15, 2001

When Doctors Feel Disposable

By JENNIFER STEINHAUER

T he doctor on the line is very angry. What they don't understand, she says, is how hard she works, how many lives she has saved and how much it costs her to run an office. If they did, she said, her voice shaking with anger, they would never make the choices they do.

The subject of her wrath might be managed care companies -- and certainly she hates them -- but actually, it is you.

For almost a decade now, doctors' anger toward managed care companies has been well documented. But more recently, it seems, some of that anger has turned toward patients.

The patients, not known to be fans of insurance companies themselves, have nonetheless adapted to the companies' dominance by taking on some of their worst qualities, doctors say. The physicians are particularly annoyed with patients who, after their employer makes a change in a health plan, drop them with seemingly little reservation just because they can no longer participate in that plan.

Dr. Bradley A. Radwaner, a cardiologist in Manhattan, described this in a letter he wrote to Eliot L. Spitzer, the New York attorney general, complaining about what he believes are unfair payment practices of managed care companies.

"Since the vast majority of patients cannot distinguish a quality, experienced and well-trained physician from one who is simply personable," Dr. Radwaner wrote, "decisions are made based on $10 co-pays versus paying full fees. Patients want referrals only to `participating' physicians so they have to pay as little as possible."

Citing low reimbursement rates, Dr. Radwaner is winnowing away the number of managed care contracts he will accept.

Many patients would love not to switch doctors. But many do not have the income to pay the full rate, or even a large part of it, and so they must go with doctors who operate within their employers' plan.

Dr. Radwaner argued that many of his patients are lawyers or other high-income professionals who can well afford to pay his fees. "A lot of my patients come in," he said, "pay me $10 and then go down the block and have their teeth done and write a check for $1,200."

Many other doctors share his point of view. Dr. Emile M. Heisiger, a pain specialist at New York University Medical Center, who accepts no managed care plans, feels that patients need to realize that he is worth the full fee. (He once told me that a patient with chronic back pain should forgo "that vacation to Mount Rushmore" and pay him for care rather than going to a less-skilled doctor who happens to be in an insurance plan.)

As Dr. Radwaner put it, "Patients have to realize that they can't get something for nothing." In other words, no first-class flight for the price of coach. Fair enough. But once you apply this market logic to health care, then how do doctors plan to woo and retain customers? Do they offer something akin to frequent-flier miles -- one free procedure for every 10 paid at full price? Do they improve customer service, offer to make house calls in a pinch or put lemon slices in the water cooler?

"I have not seen doctors do a lot of market-driven promotion to retain their patients," said Edward Kaplan, a vice president at the Segal Company, a benefits consulting firm in New York. "Not all patients can afford to pay whatever doctors want to charge. And doctors don't reduce their fees for volume. So if you really value your doctor's relationship, those who can afford it will pay the price to stay with them and those who can't don't."

Sometimes, it is the other way around, with doctors sensing that patients associate them with the worst insurance practices. Dr. Mary Yoder, an anesthesiologist in Albuquerque, said she has found that patients have become more suspicious of doctors in recent years, assuming that they subordinate good care to keeping insurance companies happy.

Because patients are told that the priority of H.M.O.'s is to save money, Dr. Yoder said, "they come into the health care environment believing that the providers are not on their side because they have incentive to provide less care."

"That adversarial attitude on the part of the patients is reflected in how they relate to doctors," she added. "There are multiple questions aimed at you, like `Are you really doing this for me?' " This was among many factors that led her to stop clinical practice; she now reviews disability cases.

The future does not look bright. "There is no doubt about it," Mr. Kaplan said. "Physicians think managed care companies have ruined the relationship between them and patients."

Jennifer Steinhauer covers health care for The Times. Her column on the economics of health care appears the third Sunday of each month. E-mail: jestei@....

Copyright 2001 The New York Times Company

Hi again,
Thanks for the advice. I do feel a bit better today with some rest
finally. I was intrigued by reading the story about "Mary Jo's mom" (I
think that was the thread...) where it was mentioned that she wore her
sunglasses in the house. That is EXACTLY what my dad had been doing.
He gave away his TV glasses cause he didn't need two pair of glasses
to watch TV with, so he said. He is getting very senile and doesn't
really understand what is happening with himself. He kept mentioning
today about how he hopes he gets better soon. The Neurologist asked
him whether or not Sinemet helps him at all. He doesn't have a clue as
to WHICH medications he is on. I had to tell the Neurologist not to
listen to him. I also had to tell the nurses the same thing cause he
is a pathological liar from way back. He doesn't lie to gain anything
or to be mean or spiteful, but he wants so desparately to be liked, he
will agree to anything, even if it means not telling the truth. He
will tell the nurses he had a wonderful meal and then two minutes
later, he tells us how much he hates the food and that he isn't going
to eat it anymore. He is also diabetic, so I think he does that to get
a rise (and attention) out of me. I am going to be looking into
Assisted Living places tomorrow, but I am not sure he is even well
enough to go into one. He fell last week (twice) and he has declined a
whole lot since then. He cannot even stand up without passing out now.
I really think the hospital is screwing around with his meds again,
yet his primary care doctor had gotten them working okay and he only
fell due to his shuffling (I think - but I am not positive). Anyway,
got to go to bed to get some rest for the assault on the telephone
tomorrow. I sure hope I don't lose my new job by doing all this
investigation instead of working...hopefully they will be
understanding.

Hi there,
Well, what do I say? Thank you sounds so empty, so pat, but I do
thank you from the bottom of my Tennessee Pea-Pickin' Heart for
listening and responding to my posts.
I think Ken feels much more relaxed. His mood is lighter. If you can
believe it, he doesn't seem quite so "demented" as he did. Go
Figure...LOL.
Hugs
Betty

Timo,

You are early, it is only 2:50 EDT now.

Take care, Bill and Charlotte

=====================================

Am I early or are you late?

Hello all,

There are several articles dealing with stem cells attached to this email.

God Bless,

Jim Stark

Karen,
The first thing you do is take care of yourself. You will be no good to your
dad if something happens to you.
Although we are sorry you have to be here, we welcome you and your dad.
The main purpose for all of us being here is to share information and be
here for each other. No question is dumb or trivial. Some of our members
have had MSA for over twenty years. You will, no doubt, be receiving a
welcome letter from Bill Werre shortly.
We are here for you.
God bless,
Jim Stark

they may need ink replacement after all send her Happy Birthday Greetings
;-)) and Tony prints them out for her ...
Tony's fingures may be well worn after all the typing he has done ....
But you all know what a lift is it to know that someone is thinking good
thoughts for you ...
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia

Hi,
I would like to introduce myself as I think I will be spending a lot
of time here soon. My dad, Art, is in the hospital right now and he
is still being evaluated, but a sharp doctor (finally found one!) has
suggested he has Shy-Drager Syndrome and when I read up on it, I
thought they ought to put his picture by the description! There is NO
doubt in my mind that he has it. Right now they are trying to get him
on blood pressure meds that will work since he has been passing out
due to the low BP, but they are still experimenting and evaluating as
I said. He lives in a Senior apt. complex, but only has nursing aides
to give him med reminders currently. The Social Worker at the
hospital said they are thinking of putting him in a Nursing Home for
rehab,but then the nurses at the hospital say he might go home and I
am very scared cause he already laid 3 hours this last time before my
daughter found him. I guess I should look for an assisted living
facility come Monday, but he was already in one and digging into his
meager life savings rather rapidly, so we moved him about a year ago.
I am hoping I can find another place that is just as good, but there
are so many bad ones out there, I am nervous about that. I also just
started a new job, so I can't spend a lot of time looking for places
and certainly have to do a lot of the looking by telephone. I have
very severe Sleep Apnea that I am getting treated for and this isn't
helping my sleep at all. My BP was 192/100 tonight.
Anyway, just wanted to let you guys know that I will be lurking here
looking for advice and a feeling of knowing I am not alone.

Carol,
Such a beautiful letter. Your words made me feel so
much better.

Mary Jo,
Infection can put a MSA patient into a near coma state. When the infection is
gone, physical and speech therapy can bring you back. Dehydration becomes a big
problem. See my wife's story below as a good example.
If she was taken off Sinemet during an infection, maybe she should try it again
now to see if it helps with rigidity. MSA patients do not usually have tremor,
and Sinemet is usually used to help with rigidity in MSA patients.
Take care, Bill and Charlotte
Charlottes story
My wife Charlotte had fatigue and back pain as early as 1987-88. And by 1989
gave up her job at Exxon (managing service stations) as too demanding. She was
able to keep working and took a job managing an office supply store which was
only open 40 hours a week.
By 1990 she was having some difficulty walking and her handwriting was becoming
very small (microwriting). At first the walking problem was attributed to a
damaged disk (repaired in 1972). But she was sent to a neurologist and they
said Parkinsons. She was put on Sinemet and Eldepryl which helped greatly and
she was able to function again. She did have violent dreams which was
attributed to the Sinemet. She felt that getting rid of the rigidity was worth
the violent dreams and continued on the meds. Even with the Sinemet, she got
progressively worse and slowly increased her medicines.
Around 1992, the neurologist said she should see a movement disorder specialist
and sent her to Dr. Pincus (a PD expert) at Georgetown University Hospital in
Washington, DC. He said the Eldepryl was to slow the PD and it was obviously
not working, so he pulled her off that and upped her to a Sinemet 25/100 every 2
hours. After several visits over two years and MRIs, he said she had a
Parkinsons Plus disorder and suspected OPCA. By late 1994, she was having
extreme difficulty walking and Dr. Pincus office required a lot of walking, so
we had to stop going to him. By May 1994, she was unable to drive or stand long
enough to work and resigned. We were told by someone at Social Security that
she could not get SSDI as she was not totally disabled.
Her regular neurologist had a husband who did research at NIH and referred her
to NIH (Dr. Hallets group). She went in for a full days testing in early 1995
and got a diagnoses of MSA. In their report to our neurologist, they said she
had orthostatic hypotension and added florinef to her meds. We found out that
the person at Social Security was wrong and she was eligible because it was a
permanent disability and she started receiving SSDI in October 1995. By that
time she was in a wheelchair, sitting or laying down. She could only walk with
me providing complete balance. By this time she had incontinence and was using
the disposable briefs. Charlotte had trouble with constipation most of her life
and it got worse. But she did not get much worse for about three years.
The first of August 1998, my wife Charlotte went into the emergency room of
Fairfax Hospital with a severe blood infection, probably caused by a UTI. By
the time she came out 18 days later, she could not lift her hand off the bed or
speak. She had a PEG (gastric feeding tube) inserted while she was in the
hospital and was being fed all liquids, food and meds through the tube. She
went directly from the hospital to the INOVA Cameron Glen Re-hab center in
Reston. While there she got excellent physical, occupational and speech
therapy. Twenty seven days later, she came out able to eat a soft mechanical
diet (she still gets most (95%) water and meds through the tube) and she gets
about 50% of her nutrition through the tube, but she is able to speak most of
the time and eat some food.
Even if speech is totally gone, they can stimulate throat muscles with certain
exercises like putting a small mirror in ice then massaging either side of the
back of the throat to get the swallow reflex working again. Several people have
responded to this type of therapy. The speech therapist showed me how to do it
and we did it several times a day. Once the reflex is back, they can get some
speech back. They should also time therapy for about 30 - 60 min after the
Sinemet to give the most flexibility.
If she is taking Sinemet, you need to let the nurses know that protein should
not be eaten for at least 45 minutes after she takes the Sinemet AND that the
Sinemet should not be taken for 2 hours after eating protein. Protein
interferes with the levodopa in the Sinemet getting into the brain and causes it
not to work. This info can be found in the sheets you get with the Sinemet or
at:
http://www.health-center.com/english/pharmacy/meds/sinemt.htm

Three years ago she was diagnosed with autonomic neuropathy with some
Parkinson's. Symptoms at that time were loss of balance with falling three
times requiring treatment. Always tripping with the right foot. Loss of
bladder control. She had a bladder tack which in hindsight was probably not
female related, but autonomic because after the surgery she had to self
cath.and has never regained the ability to urinate.After the surgery for the
bladder, she lost her mobility. The shuffled, lost the swing of her right
arm, lost her facial expression, lost her desire for socialization, the iris
was not constricting. Wore sunglasses sometimes in the house, unexplained
sinking feeling and having to lie down. Snoring, sleep studies. Nightmares.
She had gone to having no good days for about two weeks. At that time on
Sinemet. She had no bladder symptoms other than cloudy and unpleasant odor
to the urine. She had a culture done and was told that it came back neg.
However when she continued to be unable to get up other than to go the
bathroom she then begged to see her neurologist because the "Parkinson's"
was becoming unbearable. This is where I began on the other letter...after
three days of dodging us he finally said you will have to see your family
dr. We feel like the doctors and nurses here run the other way when they
see us coming, and only now after 4 weeks camping out at the hospital and
nursing home are they beginning to realize that we are not insane. She
was removed from Sinimet while in the hospital and did not seem to miss it.
He left her on the flourinef while she was having the potassium leveled.
However upon arriving at the nursing facility she was removed from the
fourinef and told to get Midirin prn for PT..She never had any from Tues to
Fri. She is allowed 3 Ativan as needed daily, Ambian for sleep and 2
potassium tablets. Blood drawn Thurs. no report yet. We live in South
Carolina. Directly on the border where I-85 crosses from GA to SC. 2 1/2
hrs from Atlanta. 4 hours from Charleston. 6 hours from Duke where we took
her at the onset of all this..they were too large and busy to accommodate
our needs...maybe things have changed now. I work in the medical field and
know the proper way to treat patients and that place left much to be
desired. But COULD try again. Yes the grade 4 bladder infection was
cleared up and the gall bladder post op issues are normal. I realize that it
will take 6 weeks for her to recoup from the surgery, but she is not just
weak, she in incapacitated. Is this what SDS is capable of? The trauma of
surgery sending you so quickly into the next stage??Thanks, maryjo

Mary Jo,
Did your mom get treated for infection while in the hospital? Did the infection
get cleared up completely? This certainly sounds like an infection (lethargy
and requiring too many tums in a day) in a MSA patient, especially if it came on
rapidly.
Have your Physical Therapists go to this site for info on MSA:
https://www.ptjournal.org/May99/May99_abs/v79n5p488.html
On the trip to Vanderbilt - that is a LONG trip for a MSA patient in that
condition. Where are you located, there may be a place that is nearer to you.
To help you more, we need more background of how your mom got to this point,
exactly what her symptoms are, what meds she takes, etc.
Take care, Bill and Charlotte
=============================

I would like to thank all that have helped Anne with her survey. It
has been a great response. One thing less for her to worry about for
her paper. I am answering all but it is taking me time as I do not
type very fast.She has appreciated all the lovely notes that I have
printed out for her too. Gives her a real lift.
Anne is a bit better today but had a dreadful night. Coughing always
seems to get worse at night.Anne sends her love to all.
Best Tony

Not for me. My wife wanted me to try using blueberry juice and a couple of
other things. Tastes good, but made no difference. So, not a total loss.
;-)
Regards,
=jbf=
John B. Fisher

Betty,
Your post brought tears to by eyes, because it reminded me of how Rob
and I reacted when he was first diagnosed. I realize it has been a
while since Ken was diagnosed, but he only really "heard" it
yesterday. Rob was only 51 when we heard the news (he just turned 55
in May) and we were shocked, to say the least. For the first two
weeks, we both burst into tears whenever we looked at each other. It
seemed so unfair. This wasn't supposed to happen to us!
But it did. And once we got over the shock, we decided that we could
spend however much time we have left together being miserable about
the fact that Rob has this awful illness or else we could get on with
LIVING. We decided to live. And we do - every day. I quit my job
(I was a financial executive in a software company) and Rob and I
spend our time traveling and enjoying each other and our family and
friends. We bought a summer house near the beach and we go for walks
every day near the ocean. I realize that we are blessed to be able
to afford to do this, but even with out much money you can be sure to
do things that are enjoyable.
We completed our estate planning and we BOTH have living wills. We
have begun to discuss burial plans and end of life decisions -
feeding tube or no feeding tube, trach or no trach, nursing home or
not - etc. Rob has some cognitive loss, although not enough to call
dementia and he is acutely aware of the things he cannot do anymore.
He has certainly lost physical abilities, but it's the mental loss
that really frustrates him, and frightens me.
None of us know how long we have to spend on this earth. One of our
friends was very upset when he learned about Rob's illness. But soon
after Rob's diagnosis, this man, who was in his early 50's, died from
a heart attack without warning. He and his family never got a chance
to say good-bye, or to cherish doing things together that they now
have lost forever.
Betty, take this time with Ken and use it. Show him this letter and
ask him to commit to LIVING with you and your family for as long as
he is able. It's so easy to get caught up in the things that have to
be done that you can easily forget that there is joy in nearly
everything. Even the bad days have opportunity for quiet time to
watch a movie together or even just take a nap (without guilt!) in
the middle of the day.
Enjoy life.
Hugs,
Carol & Rob

Hi, I'm posting this message for my father who has OPCA. Any info
much appreciated.

So glad to hear some upbeat news from you!!!!!

Waverley:
Your attitude tends to go along with that os our Neurologist who never
took Ken's BP and suggested that we not do it either. We really got into
trouble when a Physical Therapist paid no attention to what I said about it
and reported to the Neurologist that it was too high sitting. She then cut
down on the Midodrine a bit with the result that Ken passed out for 15
minutes and had to go to ER in an ambulance. When the Neurologist came to the
Hospital and saw that there was nothing else wrong, she told me not to let
anyone take his BP any more and to put him back on the full dose of the
Medications. When Hospice started coming, the nurse had to take it each time
she came and of course it was all over the place depending on his position. I
remember once when he was in bed, she took it and it was 200/110. She
recorded it and turned to me saying with a smile,"Perfectly normal."
Barbara Smith

Hi all,
Another group came out for the existing NIH rules.
Take care, Bill and Charlotte

I'm so sorry to hear of all your trouble. I wish I could make it
better, but just know my prayers are with you.
Since I live in the Tampa Bay area, could you please tell me where
your Dan is, so I don't take my Ken there?
Hugs
Betty

Hooray,
At least they are working on this in Europe! "Experiments are
underway to test whether neurotransplantation by striatal grafting is a
suitable method for inducing a clinically relevant response to L-dopa."
Take care, Bill and Charlotte
=========================

Hi everyone,
Ken went to the internist on Friday. What an eye opener for us
both. For one thing the doctor has a nurse practioner who is on the
last few weeks of his internship and will be a full fledged doctor.
We saw that man, and the internist had put him wise to my visit
earlier in the week.
He just laid it out on the table. Told him he would have days that
he was feeling lousy, that the blood pressure would cause headaches.
He told him his system was compromised due to the Shy Drager and we
had to be very careful because a simple cold to someone else could
mean real trouble for him. He told him this disease was progressive
and degenerative and would get worse and it was time to think about a
living will, and explained what that was to Ken. He said it would be
a good idea to let the family know what his burial wishes were, maybe
even preplan.
His lungs were clear, so no pneumonia, but he still had fluid backed
up behind the eardrum, but they chose not to do another round of
antibiotics, but rather use allegra, and the eardrops to clear the
wax, and see if it cleared up. They don't want his system getting
too used to an antibiotic, so that when he really needs it, it will
work. His ears were not inflammed. They almost doctor told him he
would have shortness of breath, but if he could relieve that symptom
by changing positions of standing, it was just something that comes
with Shy Drager. But, he cautioned that if the shortness of breath
could not be relieved by changing positions, to call the office, it
if was office hours, or go to the ER because the heart is a muscle
and a heart attack couldn't be ruled out, even though he doesn't have
heart disease.
He told Ken that he was experiencing early dementia, that most don't
experience, but that he should take into context that he would forget
things, and his wishes should be discussed with the family. He told
Ken the disease was terminal. At that point, even though I said I
would be quiet, I had to interject and say,"But aren't we all?" Ken
started to cry, I comforted him and he let me. Then the doctor said
you don't have to rush right home and do this, but you should get it
done and overwith. He laid out the course of the disease, in that
it was very possible that he would become too weak to walk and be in
a wheelchair, and that a nursing home may very well be the
appropriate place at some point if he became unable to move.
The almost doctor also said his degeneration was a bit more rapid
than most. He was not a candidate to increase the sinemet, because
his blood pressure is so very low already.
Then the internist came in and talked with Ken, and Ken told him that
the "almost doctor" was the first person he's talked with that knew
what they were talking about. That led to a discussion about if you
aren't happy before you leave here, keep asking questions..yada yada
yada. The almost doctor said he would like to stay in the office
after he completed his internship in the next few weeks, but they
were having trouble getting things worked out. That probably means
the money part, although he didn't say. I don't know if this almost
doctor had studied this disease in school, or if there was a
collaboration between the internist and the almost doctor or if my
visit set a fire under them, but it was like a pin popped a balloon
and all this information came out in no uncertain terms.
It needed to be said. I needed to hear it, even though I have read
it on the internet. I needed to know that I wasn't loosing my mind
and that every ache and pain wasn't cause for alarm, that it was to
be expected. Yesterday was our anniversary, but we didn't feel much
like celebrating, so we came home.
Ken said he had thought about suiside, but didnt' know how to go
about it. He said if he had to go in a wheel chair, he didn't want
to live. I listened to him and then I said that this disease was not
the best of news, but we could either learn to LIVE with it and plan
for it, like the wheelchair and the lift, or He could Die with it and
I also told him, that while we were on the subject, this disease did
not only affect him but me as well.
Because of the controlling behavior etc. the doc put him on an
antipsychotic drug called zyprexa. Ken's old internist, who we lost
thru insurance changes, initially put him on zyprexa and it turned
him into a new man emotionally, but eventually the effect waned.
We'll see if it helps this time.
The internist also checked his reflexes by having him sit relaxed as
though he was in a chair watching TV, or driving or whatever. The
doctor continued to talk to him and held his attention. They were
sitting almost knee to knee. Then from nowhere with lightning speed
the doctor swings his arm towards Ken's head. He didn't flinch. I
did. Ken hardly noticed. The doctor explained that his reflexes
were becoming slow enough that he should not drive or operate
machinery, like a lawn mower or etc. That's how the internist
approached the driving situation.
I thought Ken would be a wreck all evening, but actually he was calm,
and felt much better than he has in weeks. Hopefully now we will
plan for the inevidible, instead of resisting it.
Thanks for listening
Hugs
Betty

Schweiz Rundsch Med Prax 2001 Jun 7;90(23):1035-40
Wenning GK, Seppi K.
Universitatsklinik fur Neurologie, Innsbruck. gregor.wenning@...
Numerous studies of the past years have established the clinical features,
course and neuropathology characterizing multiple system atrophy (MSA).
Clinically, two motor subtypes can be classified based on the predominance
of a parkinsonian syndrome refractory to L-dopa and cerebellar ataxia. 80%
of the cases involve MSA-P (the parkinsonian variant of MSA) and 20% MSA-C
(cerebellar variant of MSA). Virtually all of these patients show
disturbances of autonomic and urogenital function, half of the patients also
exhibit pyramidal signs. Neuropathologically, MSA-C is based on an
olivopontocerebellar atrophy (OPCA) and MSA-P on striatonigral degeneration
(SND). However, a combination of OPCA and SND pathologies is observed in
most cases. Recent evidence suggests that a key pathogenetic role may be
played by glial alpha synuclein-containing inclusion bodies, which might
lead to neuronal dysfunction and ultimately to cell loss. There is no
therapy known to be effective in treating the motor disorders of MSA-C. By
contrast, L-dopa replacement is at least transiently effective in about 30%
of patients with MSA-P. Currently, initial efforts are being undertaken
throughout Europe to develop neuroprotective solutions. Experiments are
underway to test whether neurotransplantation by striatal grafting is a
suitable method for inducing a clinically relevant response to L-dopa.
Neurologically, the options for treating orthostatic hypertension and
urogenital disorders are often overlooked.
PMID: 11447723 [PubMed - in process]

Neuroreport 2001 Jul 20;12(10):2085-90
Ubiquitin-binding protein p62 is present in neuronal and glial inclusions in
human tauopathies and synucleinopathies.
Kuusisto E, Salminen A, Alafuzoff I.
1Department of Neuroscience and Neurology, Section of Neuropathology,
University of Kuopio, P.O. Box 1627, FIN-70211 Kuopio; 2Department of
Neurology, Kuopio University Hospital, Kuopio, Finland.
We examined the immunoreactivity of ubiquitin-binding protein p62 and its
association with ubiquitin (Ub), alpha-synuclein, and paired helical
filament (PHF)-tau in the affected brain areas of human tauopathies and
synucleinopathies. Ubiquitin-binding protein p62 is a widely expressed
protein that can bind to Ub noncovalently and is involved in several
signalling pathways, making p62 a candidate regulator of Ub-mediated
proteolysis. We show that p62 immunoreactivity co-localizes with neuronal
and glial Ub-containing inclusions in Alzheimer's disease, Pick's disease,
dementia with Lewy bodies, Parkinson's disease, and multiple system atrophy.
This is the first demonstration of a common protein component, apart from
Ub, that is present in both PHF-tau and alpha-synuclein inclusions. In both
tauo- and synucleinopathies, the staining patterns for p62 and Ub were
markedly similar, suggesting that a common mechanism which requires
interaction of p62 and Ub contributes to the formation of PHF-tau and
alpha-synuclein inclusions.
PMID: 11447312 [PubMed - in process]

Re the making of millions ....... Heard on public radio that drug companies
spend far, far, far more on advertising their products than on research. (I
don't recall the exact figures)!! I was recently in an M.D.'s office
(private practitioner) when a drug company's 'detail folks' were preparing a
LAVISH luncheon for his staff. (It was a5 star meal) (I wonder who paid for
this luncheon)????? LOLOLOLOLOLOLOLO Big belly laffs. JIM

This work was does without Federal funding and so it will continue
or not independently of Bush's decision. In vitro fetilization for
any purpose has never been illegal, not even beofor the technology
existed to do it with human cells. Bush cannot ban it, not even the
Congress can ban it. That would require amending the Constitution
or a complete reversal by the Supreme Court, allowing the Congress
to criminalize something that was never illegal before.
Let's be clear here, the issue before the Bush administration is how
Federal Funds may be used, or who would be disqualified from
receiving them due to other work they do .
If you believe that interfering with the reproductive process at
any stage is wrong, or believe that any intervention other than to
improve the chances of producing a healthy infant is wrong then
the decsision of where to stand on the stem cell issue is clear.
For example, the Catholic Church opposes in vitro fertilization
so further oppposition to any use of the fruits of that endeavor
is consistant. I was surprised when the American Catholic
Archbishops came out in favor of stem cell work and not surprised
when the Pope came out against it.
But if you take a pragmatic view that you cannot stop in vitro
fertilization, you cannot stop the production of 'surplus'
blastocysts, then you can sensibly look at a process that
preserves the life in those blastocysts as mitigation even
if you oppose the creation of those excess blastocysts in the
first place.
I can respect either viewpoint. But people loose my respect
when they argue that culturing living tissue from those blastocysts
is destroying them but flushing them down the drain is not.
Some people don't like to refer to a preembryonic fertilized
ovum as a blastocyst. That's OK with me too. They can just
call it a baby and not worry about milestones in prenatal
development. But if you are willing to use terms like embryo
and fetus for those stages in development, it is inconsistent
to not accept the newer term now that the significance of a
particular milestone is understood.
--
Doug

I have to question how well that author understands the issues.
Unless I am mistaken, the stem cells found in fetuses are NOT
embryonic stem cells. Ebryonic stem cells are formed at an earlier,
pre-fetal stage.
Embryonic stem cell work does not involve fetal tissue. Earlier
work on fetal tissue has not show the potential that is seen in
embryonic stem cells, or in blastocysts.
--
Doug

Jim,

Maybe we should look at death and define it. Currently, brain death (no brain activity) is considered death. Many body cells live on after brain death including blood cells.

Stop to think about life in respect to death - the blastocyst has no brain or brain cells - defined in that manner - the blastocyst is not "alive" as it has no brain activity.

Take care, Bill and Charlotte

Hi all,
Below is an update from Maria.
Take care, Bill and Charlotte
=========================================

Hi MaryAnn,
I could turn off your mail for you. I'll be on vacation myself when you
return though so you'll have to turn it back on yourself. The easiest thing

I got this today, will try to attend, if I can get someone to watch
Charlotte,
Bill Werre
====================================
ATTENTION WASHINGTON DC AREA ADVOCATES AND OTHERS
WE NEED YOUR SUPPORT AND PARTICIPATION IN THESE UPCOMING EVENTS ON
TUESDAY, JULY 17 ON CAPITOL HILL:
On Tuesday, July 17 at 1:00PM Representative Carolyn Maloney (D-NY),
Representative Connie Morella
(R-MD), Representative Dan Miller (R-FL) and other Members of Congress
are co-sponsoring a press
conference in support of embryonic stem cell research.
This press conference will be followed at 2PM by a Congressional Hearing
before the Criminal
Justice, Drug Policy and Human Resources Subcommittee chaired by
Representative Mark Souder (R-IN).
Most of the witnesses will testify in opposition to embryonic stem cell
research. However, Dr.
Robert Goldstein, Chief Scientific Officer for the Juvenile Diabetes
Research Foundation (JDRF) and
Parkinson's Action Network (PAN) President Joan Samuelson are scheduled
to testify in favor of
embryonic stem cell research. It is very important that we have as many
patients as possible at the
hearing to show the public's support for this research!
PLEASE TRY TO ATTEND BOTH THE PRESS CONFERENCE AND CONGRESSIONAL HEARING
- AND BRING AS MANY OF YOUR
FRIENDS AND FAMILY AS YOU ARE ABLE - TO SHOW THE STRONG PUBLIC SUPPORT
FOR EMBRYONIC STEM CELL RESEARCH.
PLEASE FORWARD THIS MESSAGE TO AS MANY OF YOUR FRIENDS AND FAMILY IN THE
WASHINGTON DC AREA AS POSSIBLE.
Read below for a summary of Tuesday's events:
Tuesday, June 17, 1:00PM
What: Press Conference in support of Embryonic Stem Cell Research.
Where: House Triangle - Outside - It's in front of the East Capitol
Steps on the House Side of the
Capitol (towards the Cannon House Office Building). Near the
intersection of 1st Street SE and
Independence Avenue, Washington, DC.
Tuesday, June 17, 2:00PM
What: Congressional Hearing - Government Reform Subcommittee on Criminal
Justice, Drug Policy, and
Human Resources chaired by Rep. Mark Souder (R-IN).
Where: 2154 Rayburn House Office Building - Near the intersection of
Independence Avenue and South
Capitol Street, SW, Washington, DC.

Hi Group;
We're off to Yellowstone National Park and Medora,ND. It's a girl thing,
Mom, Irene,(sister) Suzy(niece) Betty(friend) and myself. I'm thinking my
crows will be ok with only a pawpaw and not a mawmaw around to feed them.
I'll need to unsubscribe for a while or my e-mail will over flow. The

Friends,

Lets hear from both sides of the stem cell issue.

Withholding federal funds guarantees private industry will do all the research. The research is going to go in any case.

Besides money, the government can provide oversight.

God Bless,

Jim Stark

Friends,

I would say that, judging from the number of articles from both sides of the stem cell controversy, president Bush's decision is close to being announced.

God Bless,

Jim Stark

Hello Friends,

Another opinion offered on stem cell research.

One point I would like to make: greater than 80% of pregnancies each year end in spontaneous abortion. Almost all of these pregnant women do not know they were pregnant and think they are just having their regular menstrual cycle.

This involves both blastocyst that did not attach to the wall of the womb or attached but failed to secure a good implantation.

Are blastocyst sacred? Yes, they can give life in many other ways other than through pregnancy!

If you don't agree, let us hear your reasoning.

God Bless,

Jim Stark

Hello Friends,

I think this article points out the out for president Bush on the stem cell controversy.

Given President Bush's record of siding with big business, he will decide private research is the best way to go and will save the government from having to spend the money.

It could be that the profit motive and the race to obtain patents will make things happen faster.

This is the reality of modern medicine. I do not agree with some of their methods, I.e. giving women fertility drugs and paying them to donate the eggs.

Also remember, another research project has found a way to fertilize eggs without using sperm.

The basic and ever-present question: Does the end justify the means? Do we want a cure or treatment at any price? Can private companies be trusted to do the ethical and moral thing? Can we afford the treatments or cures if they are produced by private pharmaceutical companies. They will surely have the results of this research classified as medical treatments so the FDA will be involved and insure the patent laws or honored.

With my experience with research and pharmaceutical companies leads me to say No to these questions.

This needs to be discussed by everyone, since all of this is being done to save us!

What do you think?

God Bless,

Jim Stark

Maybe I should do otherwise but I don't take my blood pressure at all - I don't even own a cuff. I know it is low cause how I feel. It's been years now. If I am crashing, I go to the doctor and we try to make due. Same thing with temperature- I know how I feel when mine is super sub normal and I know when it is a fever (99 to me is a fever/100 high fever). I tkae it when it is persistently low or high. My physician does on occasion take my BP and temp, but we know it is going to be low bp. People with high blood pressure often cause themselves more anxiety by taking it. Kind of like when you want to loose or gain weight and you keep on weighing yourself. You don't want to have to ride every high and low- that is exhausting. Go by how you feel. If my bp is low and I was going to bed anyway, who cares, as long as I am hydrated. But if I have it low and I am blacking out at work- that is a problem. I am driving nowwhere and I am just going to concentrate on
getting it up. But ofcourse it does matter (your BP) reading for medial fact and if I were a caretaker I'd probably care to do it. But I am a patient and I just go by how I feel and if I responding to the meds etc.

Joanne:
Bill has tolded you to keep a log of everything that happen's to your
day during the day.
I'm not good at a log, so I asked Bill to show how he does it and he
was so nice to copy what he put's in his for the day. You can see it
by going to messege # 13042, it may help you to see how the best does
it. (did I make your face turn red Bill?)
Take Care
Vera

This sounds like the Anne we all have come to know and love... stubborn
and wilfull.. and putting on makeup for the doctor! LOL! Gotta love
her spunk even though she needs a good spanking. And yes Tony you can
show her this one! :)
Hugs,
Pam

One of the purposes of this site is for people to vent. Shy-Drager
can be frustrating for all of us.
But another purpose is for us to "lift each other up" (even when we
end sentences with prepositions.).
So I offer the following, very uplifting web site to all:
http://www.goodthings.com/
Hope you enjoy it. Take care.

Joanne,
Welcome to the Shy-Drager - MSA support list. In 1995 doctors decided that
MSA or Multi-System Atrophy was a better name for Shy-Drager Syndrome,
sporadic OPCA and SND. This email is to give you some introductory
information about the disorder only. It should also clear up some misleading
info on the internet.
First of all, don't believe everything you read about MSA or Shy-Drager
Syndrome. Our experience is that you could have 27 years yet. Many people
have lived more than 20 years with it. There are new research results
published every day. So much brain research has advanced since 1993, that
there is now some hope a cure could be found in as little as five years.
Concentrate on what you can do. Exercise does help keep movement. You need
to start a daily exercise program now (everyday). In particular, you need to
work on range of motion exercises (warm-ups or arthritis type). You must
also work on speech exercises. Your volume will probably go down slowly and
you will not know it, so get Rose's speech exercises and start them now.
They are on this site

We would like to remind you of this upcoming event.
SUPPORT GROUP MEETING: Oregon/Washington
Date: Sunday, July 15, 2001
Time: 2:00PM GMT
Date: Sunday, July 15, 2001
Time: 2 PM
Where: OHSU (Oregon Health Sciences University) Library
Agenda: Casual - No scheduled speaker
Questions, exchange of ideas, getting acquainted, etc.
Further Info: charmayne@...
or
mears54@...

JHRN You did not give a name. But here is the article Pam sent out for unsubscribing.

I am sorry to hear of the death of your husband. Please know that all on this list will be thinking of you and praying for you and your family.

Barb Selleck [INLINE]

--
"Worrying does not empty tomorrow of it's troubles. It empties today of it's strength." Mary Engelbreit

HELP I CANT UNSUBSCRIBE MY HUSBAND DIED ON JULY3

I hope I am doing this right by following Anne's instructions and
that you get this message.
First I must thank all those that have written to her. I have
printed out all letters for her and she is very appreciative.
Anne's doctor saw her again today. The pneumonia is worse, now in
both lungs. The doctor though thinks that the antibiotics are
starting to work.
I expect some of you know Anne well enough to tell you what she did.
I noticed before the doctor came she had some make up on!! Also a
fixed smile when he arrived!! Talk about a con artist. She is so
determined not to go into hospital. Of course she came unstuck by
when the doctor got her to sit up to examine her she went into
spasms of coughing and could not stop!!!! Nearly choked herself
trying to stop! The doctor said she looked brighter but to pack up
the facade!!! He's not daft! Oh dear she never stops trying. She
was so afraid of the hospital argument again. He did say it is
serious but did not mention hospital this time. Probably remembered
the argument last time and wasn't willing to take her on again! She
is staying in bed though which is pretty much unheard of for her.
Usually sneaks out thinking I don't know! I think this is because
she is sick of it and wants to get rid of it. She does say that she
could feel a lot worse. Mind any major problems such as dificuly
breathing etc I will pick her up and dump her in the car or call an
ambulance!! So no worrries folks. In a couple of days she will
probably start having physio. The doctor said it is too soon as yet
as it will spread the infection. He also said to go easy on the
cough mixture has this prevents expelling. He is a very good doctor
(may I add he is American) that has been standing on his head trying
to get things done about the other problems she has.
Poor Anne asked if she was infectious. He told her she is highly
contaguous. Very disappointing for Anne who has a birthday coming
up . The family usually makes a big thing of her birthday. Another
milestone!! This one though she will have to fore go.
Now a question Anne has asked me to ask you all. Yes even with this
Anne is still studying as best she can. She needs to do a survey for
the paper she say's she is trying to write. I say trying as pages
keep ending up in the bin!! She has however now made some progress.
She needs for her research (cant do on the computer at the moment) a
question answer for her statistics. Think I have that right. I don't
understand what she does.
The question if anyone would be kind enough to answer.
Have those of you that had strong disciplne as a child, through
employment, sport, hobby etc found that they have been able to deal
better with the trials and tribulations of SDS/MSA?
As many answers as possible would be appreciated very much by Anne.
Just a YES it has made a difference - No, no difference or Doesn't
apply to apledger@...
Thanks a lot, take care everyone. Best from Tony
PS Hope you get this.

Hi Nancy:
Haven't heard anything about Anne today, so not sure if they got her
to the hospital kicking and fighting or not.
Yeah, she has a new grandbaby do in a few weeks, her daughter
Lorraine is going to have a baby girl in August.
Do you know I've been on this group for a year already. I can't
believe it. The time sure goes fast. Sure would love it to slow down
a little. Next thing you know it will be Christmas. Did I say that.
Take Care
Vera

Elaine:
What a small world. I went to Excelsior High in Norwalk , the other
school that they made grease the movie at. Pat Nixon went to my
school, just years before I did. I went to school with the guys that
did the record Boss and Boss strike back. I would of love to go to
school with Beau Bridges, of course I wouldn't get any work done.
Didn't you just hate the skirt checks? Ours was alway in P.E. We'd
wear a long skirt that would touch the floor when we got on our
knee's, but then would roll it up and put a belt around our waist, so
you couldn't tell. I had P.E third period, so we would hear that
there was a skirt check, so down would come the skirt at p.e, but
back up when we left. Also had to be able to have a hand full of
skirt if the teacher would glab the side of the skirt otherwise it
was to tight. One of the p.e teacher didn't like me , so she said my
skirt was to tight and send me to the deans office. The dean was able
to glab a hand full of skirt on both sides, and tolded me to get out
of the office because I didn't need to be there and then talked to
the teacher about it. She was always after me for some reason.
I've also been to tiny naylors and c.c cinnamon cider down in Long
Beach where we'd dance till 11:00pm (had to be home by 12 or I was in
big trouble)
I live in Walnut now, not to far from Upland and my daughter lived
there last year.
Gee what a small world we live in.
Take Care
Vera

Yeah, it needs a big overhaul ... I've been thinking that I need to be more
active at working on a support group in this area (probably ataxia related,
but dunno). Time will tell ... Just mighty hard to get all the work done I
want when I feel so punk.
Oh well. Enjoy.
Regards,
=jbf=
John B. Fisher

Lots of good memories in there too.

Thanks for your note. I am still trying to get organized. 52 years of collecting stuff. 51 of those we did together.

One old lady does not need so much. But what do you toss out?

I have given away so much and still have plenty.

Love your dad through this time. You can make it.

Barb

Hugs for you. [INLINE]

--
"Worrying does not empty tomorrow of it's troubles. It empties today of it's strength." Mary Engelbreit

Hi. Thank u for listening. Yes u are right about anne going to the
hospital. I do hope Anne does go to the hospital and gets better.
A new grandchild! how exciting.
Love,
nancy

Others may have different opinions on this, but the
neurologist at Mayo who dx my father said that he
shouldn't get too caught up in the numbers. He said
that as long as the low BP isn't causing him any
problems (dizziness, etc.), that he shouldn't worry
about it. My father's standing BP is fairly low and
unstable, but he doesn't seem to have problems caused
by it (yet), so they aren't treating him with BP
medication. Right now he is just controlling it with
diet.

Hello there!
I have been reading the posts with interest. My siblings are
worrying about my dad who has MSA(OPCA), They were
wondering if their is anything special that doctors would need to
know about my father's condition in the case of a medical
emergency. I've read about the body temperature being lower
and thus possibly hiding an affection. Is there anything special
that emergency attendants should know? Any medications that
would be harmful? They were mostly concerned about the
possible ill effects of "routine" treatment for low blood pressure.
Is there anything else that we or doctors should know. Any doctor
that I have spoken to, except for my father's neurologist, has
been unaware of MSA, although some had heard about SDS.
In general, do you see a need to "inform" doctors of the nature
MSA and if so how do you go about it?
Thanks,
Joanne (who'se father is still making jokes and laughing even
if he is having a lot of trouble getting around.)

http://jbfisher.home.mindspring.com/ataxia/

Hi, Charmayne,

Wayne and I won't be able to attend this weekend. Thank you for the reminder.

Laura

Vera -
And WE had to make sure that our skirts were below our knee caps - the way to
judge was to have a student kneel and their skirt had to touch the
floor.....tricky part, my mother worked in the Attendance Office! One day I
tried to wear a coat to cover the fact that I was wearing long pants. I was
caught. Poor Mom - how embarrassing - she just laughs at it now. What fun
we had, though - I went to Venice High School (California - where the movie
Grease was made), graduated in 1959, (but I'm only 59 - skipped a grade! -
ha-ha-) and we had such a cultural mixture - we all got along, and no one
even told us how!!!!! We recently had our 40th class reunion, and a friend
and I produced a cookbook for the occasion based on our cultural backgrounds
- had such good input and coversation via email and regular mail. We drew
from the wealthiest families to the poorest - the poorest lived around the
Venice Canals - real estate now worth millions of dollars. Beau Bridges
(Lloy'ds son) was in my class - jsut to give an idea of the diversity!.
Myrna Loy attended Venice HIgh school - a sculpture of her is still in front
- used to be painted all colors depending on the football team playing that
particular week. Learned to water ski in what we called "mud lake" - which
is now Marina Del Rey. We had no drive-ins mentioned in these listings -
but those from California should remember others - Tiny Naylors, etc.
Others?
Thanks for good memories - and wonderful, much appreciated support! (Bob
went to Chaffey High School in Upland - anyone from that area?)
Elaine Grimmesey

Barb, Sorry this one came at you. I know what you mean. My dad is in the process of moving to my sister's and we are going through the house on weekends to prepare. There is sadness and surprise at every turn. Debbie

Mine is Cingular, used to be Southwestern Bell.

Well satisfied with them.

Roaming depends upon the charges in the area. It looks as tho you are in our region.

Maybe if you do not want to lease one,usually at least two years, you could borrow one from a family member or a friend and pay the expense of your calls when the bill comes due.

The mountains give you a lot of trouble sometimes. The terrain is a problem too.

Do you carry a CB with you? I also carry one of them with me on trips. A battery powered one in case the car is on the blink. They are limited in some terrain too. Mine also has a weather station on it. Can be used either way, battery or adapter from cig lighter or auxiliary plug.

My phone is an Ericsson. Had Motorola for a long time. Is $33 a month and I would not want to be without it. The kids like to keep track of me when I am out running. They do get upset when I do not turn it on. Ask me what use is it if it is not turned on. Oh well, sometimes I do not want to be found.

It depends upon what service you want with it.

Leaving on Sunday, may present a problem too. Not much time.

Barb [INLINE]

--
"Worrying does not empty tomorrow of it's troubles. It empties today of it's strength." Mary Engelbreit

Carol:
If your dad should ever have to go to the hospital again, asked the
head nurse what meds they have your dad on and the times that they
are given. When Fred was in the hospital a few weeks ago with
pneumonia I made sure that I talked to the head nurse and got a copy
for myself. One reason was because I wanted to know the times and
also because the meds that they had given Fred worked very well and
if he should ever get it again, I can tell the doctor what has worked
before. I now have the copy in his folder, always on hand.
Always
Vera

Hello Barb and all;
Sorry to hear Barb, about the punch in the belly aggravation you just went
through.
Being you brought up the subject of cell phones, is there one that is
recommended?
My sister Irene and I are taking Mother to Yellowstone National Park, using
the RV. Irene wants a cell phone along, just in case of an emergency or
vehicle problems. Plenty of mountains to go through.
My first experience with a cell phone was two years ago, when Ione, I and
Mother went to New Mexico in the RV. The roaming charges were horribly high,
I believe I was mislead about the charges. I think that was with Cellar One.
We want one for the trip only so no long term leasing. What does the group
suggest????? We are leaving on Sunday. That's the plan so far.
Mary Ann-

Sheila:
I forgot all about submarine races,those were good times.Also trying
to get as many kids we could into a phone booth and cruising the
parking lot at Harvey's broiler with the windows down and the music
up. Drinking 1000s of Zombie coke's and sox hops. How I miss those.
Or getting into a drive in movie, a car load for $1.50. Watching the
movie The birds and knowning that the attic was full of them , but
screaming anyway when she went in.
And then the dress codes at school. You always had to wear a dress or
skirt no pants. Gee those where the fun days.
Take Care
Vera

Sheila,
Yes,
Charlotte and I remember the Sir Loiner first at Topp's and later when Topp's
was bought out by Gino Marketti (the football player) and became Ginos (but
Ginos was not a drive in). Charlotte would get either the Sir Loiner or the Jim
Dandy (a ham and cheese sub) and I would get the Maverick (hamburger with only
pickles and onion).
You must remember Little Tavern Shoppes then. Unfortunately they went out of
business about 4 years ago. I remember when they were 5 cents each or 50 cents
a dozen.
I proposed to Charlotte on Hain's point. We have a picture of Charlotte and
Lisa (about a year old) with the Cherry trees.. And I do remember the submarine
races there :o) I still don't remember Chinese fire drills. We were too busy
with keeping our cars running I guess. Did some stupid things, that just wasn't
one of them. Worked all week to get the engine in shape and drag races on
Sunday at Aquasco or Manassas.
Remember the trolley ride to Glen Echo? Better than the rides. Marshall Hall
and the boat ride there? Walking up and down the stairs of the Washington
Monument (stairs were closed years ago). Jimmy Dean at the Uline Arena? Drive
in movies, better known as passion pits.
Those were the days :o)
Take care, Bill and Charlotte

http://www.pobox.org.sg/home/sharonwong/Health/fruitbenefit.htm

CONFERENCE: NORD Conference, Arlington, VA
What: National Organization for Rare Disorders Annual Conference
When: October 5 - 7, 2001
Where: DoubleTree Hotel in Arlington, VA (across the river from
Washngton, DC).
For more information see:
http://www.rarediseases.org/events/oduconference.htm

Kt-girl;
My heart goes out to you. KT, you must continue to chat with us so we can
help you through those bad days.
First of all do you have a caregiver? It almost sounded like you live alone.
It would be nice if you had an advocate in your corner. Can an local agency
or your church, help you find a caregiver or a helper?
You mentioned dizziness and headaches, maybe the dosage of flornief is not
enough to relieve or stabilize your Low Blood Pressure. There are other
medications also that may help here, like Proamitine. You might re-consider
going back to a hospital and stay there until it is stabilized. Maybe a
different hospital, and different doctors.
You also mentioned increasing your salt and water intake. My mother needs to
drink water before she gets up. Which increases the volume in her veins and
makes her feel so much better. Water is so important to mother. It seems to
work magic on her.
Also my mother wears waist high compression hose all day long. There are
different amounts of pressure and those that are tighter are harder to get
on and off. You may need someone to help you in the AMs and PMs. Jobst are
used by many, but they are very expensive. Ames Walker has a site on the web
that sells compression hose which is very reasonable. They have other brands
besides the Jobst.
On this Shy-Drager site, we have talked about meds a lot. So in the archives
there is pain meds, rigidity meds, spasm meds, tremor meds, BP meds,
et.,et.,..... Just inquire or explain in detail, so we help you learn and
you can print out suggestions for the physicians.
There is a time for everything....we have heard this biblical quote
often....I also think there is a time for feeling crappy. After you think
you've had enough of that feeling, which we all do have, then do something
really nice for your self, something that will make you smile.
Loneliness goes away when your friends show they really care. There are a
lot of friendly and smart people in this group.
-From: ktlivesoutloud@...

OK guys - Bill and Vera ..
I have been monitoring the discussion of hamburger joints and Chinese fire
drills .....
In the mid 50's in Arlington VA we had the BEST hamburger drive in ... with
girls on roller skates and trays on the cars (like the Sonic does today)
... the very 1st hamburger specialty was called the Sir Loiner (Hot Shoppes
stole the concept and then MacDonalds with the Big Mac ...) but the original
Sir Loiner was the best!!
Then those Chinese fire drills where you got as many kids into a Volkswagon
or station wagon or your mothers car ...... and then everyone piled out in a
tumble (based on the clown cars in the circus) ...
there were the submarine races off Haines Pt too ... and all that fun stuff
....
just had to add my 2cents worth to the memory lane ...........
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia

Hi Dick:
Glad someone remembers chinese fire drills, the mooning I only
watched.:o) Yeah, right.
Take Care
Vera

Ok! you guys, it really isn't fair you got Sonic and I don't. Geez
with the chicken sandwich I've been having around here, the feather's
in it may make it taste better. They said with was chicken, but
really not sure.
I hope you enjoy.:o)
Vera

Barb:
I guess you'll have to eat one for me at Sonic. I know we don't have
them around here, but then where I live I have to go to another town
just to shop for clothes. I know I live in the city , but you
wouldn't know it in Walnut. Just a small town lost in the bigger city.
The chicken sandwich sounds good. ONly in my dreams, I guess
Enjoy lunch.
HUgs Vera

John,
Are you picking on my beard? Pam doesn't need an excuse to pick on me
too. Okay Vera, get your shots in too :o) Should have known that you
would know about a restaurant chain :o)
Wot's this "great bad food" bit? Good site! It looks like the Topp's
restaurants here in the early 50's. Top Hat and Topp's - wonder if they
knew each other. The nearest Sonic to me seems to be North Tazewell -
about 90 miles from me, :o) sorry, I won't drive 90 miles for even a
Little Tavern Shoppe hamburger (and they all closed because I wouldn't
drive 20 miles). :o) Now I make my own Little Tavern Shoppe hamburgers
too :o) (I don't put tomatoes or lettuce on mine Vera).
Take care, Bill and Charlotte

Scroll down for article. Barb
Blowing Smoke on Stem-Cell Research
Anything but the truth.
By Wesley J. Smith, author of Culture of Death:
The Assault on
Medical Ethics in America published by Encounter
Books
July 12, 2001 8:20 a.m.
here is an old saying among
trial lawyers that goes
something like this: "If you can't
argue the facts, argue the law, if
you can't argue the facts or the
law, blow smoke." This proverb is equally
applicable to
political arguments. In the Great Stem-Cell
Debate the smoke
blown by proponents of federal funding for
embryonic-stem-cell research (ESCR) has grown so
thick
that global-warming activists should sound the
alarm.
Up until now, those who advocate federal funding
for ESCR
have driven the debate. This isn't surprising
given the blatantly
biased coverage by the mainstream media as
exposed by the
Statistical Assessment Service (STATS), which I
described
in a previous NRO piece. But now, opponents of
federal
funding are beginning to hope that time may
actually be on
their side. Indeed, the longer President Bush
ponders what to
do, the clearer the air is becoming.
The following are the primary arguments in favor
of federal
funding. What once appeared to be concrete
pillars
supporting a compelling argument have turned out
to be
constructed out of wispy particulate matter that
may be
beginning to collapse.
Only IVF Embryos Would Be Targeted For
Destruction:
The American people are deeply pragmatic. Thus,
the most
potent argument in favor of federal funding has
been the
promise that only embryos destined for
destruction from IVF
fertility experiments would be used in federally
funded
research. Opponents' response to this
argument--that no law
requires these embryos to be destroyed, that some
might be
ultimately adopted by infertile couples, that
such attitudes lead
directly to the slippery slope, etc--while
certainly true, have
not persuaded a public that seems to view the use
of
unneeded IVF embryos as being akin to recycling
aluminum
cans.
But a story has now exploded into the news that
should
shatter this popular complacency. Scientists at
the Jones
Institute for Reproductive Medicine in Norfolk,
Virginia
bragged in a press release that they paid women
between
$1,500 and $2,000 apiece for their eggs, and then
used them
with the egg providers' consent to create
embryos for
the purpose of destroying them in ESCR. These
scientists
claim that making embryos for research is "as
ethical" as using
frozen IVF embryos. Moreover, they contend,
freshly
created embryos might be "superior" for research
purposes to
those thawed out of a deep freeze. If that is
true, how long
would scientists be content to use "in excess of
need" IVF
embryos?
The response of pro-ESCR scientists and
bioethicists to this
development has been especially telling. Rather
than forcefully
and unequivocally condemning Jones Institute,
their primary
complaint has been that the "timing could not
have been
worse" meaning that the disclosure makes a bad
appearance that could give President Bush grounds
to refuse
federal funding. There has been no reported
outcry from the
ESCR crowd that the creating human embryos solely
for the
purpose of destroying them in research is
immoral.
With this breaking story, it is now clear that
the IVF
boundary would never hold. Instead, federally
funding
ESCR would merely free up private dollars, now
used for
IVF research, to fund the kind of activities
undertaken by the
Jones Institute. Moreover, we must not forget
that the biotech
industry is lobbying hard against the Weldon Bill
crucial
legislation that would ban all human cloning on
the basis
that cloning would be a necessary aspect of
embryonic-stem-cell medicine should the research
ever
become clinically viable. Thus, all of this talk
of restricting the
research to IVF embryos is really nothing but the
old bait and
switch.
Embryos Would Not Really Be Destroyed in the
Research:
Some advocates of federal funding who are queasy
at the
thought of destroying embryos have settled their
uneasy
tummies by changing the scientific definitions.
Thus, the
Washington Times's Suzanne Fields wrote, "Though
these
fertilized eggs are popularly referred to as
embryos, they
really aren't, not until implanted in a uterine
wall. They are
more precisely blastocysts."
Fields may be a good writer but she clearly
doesn't know her
human biology. An embryo by any other name is
still an
embryo. The 1989 edition of the American Medical
Association's Encyclopedia of Medicine explicitly
states,
"From the time of conception until the eight
week, the
developing baby is known as an embryo." In its
earliest stage
of life the embryo is known as a zygote. The
embryo is called
a blastocyst when it reaches the stage of
development where
it can implant into the womb. At this point the
embryo may be
made up of more than a hundred cells encased in
an
embryonic lining. This is the stage of the
embryos that are
destroyed when their stem cells are harvested.
Along these same lines, Senator Orrin Hatch,
former Senator
Connie Mack, and other ESCR supporters who
self-identify
as pro-life, have taken to asserting that life
doesn't really
begin until actual implantation in the mother's
womb, thereby
seeking to hold on to a thin thread of
consistency with their
previous anti-abortion advocacy. (Hatch put it
rather
indelicately, stating, "Life begins in the womb,
not a
refrigerator.")
The idea that life begins in the mother and not a
Petri dish
may reflect a metaphysical belief system to which
these
anti-abortion politicians are surely entitled.
But it isn't biology.
Biologically, an individual human life commences
as soon as
sperm merges with egg. At that point, its entire
genetic
makeup of a human individual has been determined.
The rest
is simply a matter of time and development.
Only Embryonic Stem Cells Offer the Full Promise
of
Medical Breakthroughs:
For years, the propaganda coming from ESCR
supporters
has claimed that only embryos offer the potential
for the full
range of cures that scientists hope to develop
with stem-cell
research. Happily, amazing breakthroughs using
alternative
stem cell sources umbilical cord blood, organs,
fat, etc.
have dramatically altered the playing field.
Indeed, terrible
human maladies have already been healed using
stem cells
found in umbilical cord blood. Moreover, a recent
scientific
journal report stated that stem cells found in
bone marrow
might be as flexible as embryonic cells. Thus,
scientists may
be able to obtain virtually all of the medical
benefits that
ESCR advocates hope to achieve using alternative
cell
therapies without our society having to ac