My blog

Pam and all who are curious:
I'm sending pic's of Charlie and Orley.
I can see that these two crows look very different from each other.
I can't help it but feel so proud of my babies.
Mother has been doing quite well. Today she and two other residents went
fishing. She wasn't very happy because she didn't catch anything. Besides
the worms were dead and stinky and by the time she got a nibble it was time
to go back. They didn't move the pontoon around where the fish were. She
said the water was to shallow and dirty. "Mom, can't you say anything
positive about getting to go fishing?" I asked. "Well, she said, I got a
nibble". "Tilley caught a fish, at least we didn't get skunked".
My Momma may have a lot of faith, but she sure has a persistent negitive
streak.
Mary Ann-
Ps... let me know if the pics don't come through.

Your babes are looking good. I hope they can survive in the wild when
you let them go.
Barb in HOT TEXAS where crows are not liked very much.
--
"We have quit learning if we do not feel a little more ignorant every
day." W.D. Tammeus

Hi Jim:
I don't write very often, but found your msg. interesting. We just
watched a program on PBS last wk. about ergot. I had never heard of it.
The documentary was about the Salem witches, as well as others that were
burned at the stake, stabbed, etc. They retrived a body that had been in
the bogs, I don't remember where. They ckd. the stomach contents and
found ergot. He had been killed in a manner similar to the way
witches/warlocks were killed. They read past journals and found a
mention of a young girl that had the strength of 10 men....and assumed
she was too a witch, and was burned. After doing much research, they
concluded that ergot had caused alot of people to "go crazy, act bizzare"
which made our forefathers think they were witches. I had never heard
this theory before, but it was an interesting program.
My sister had MSA, and on several occasions, we found that the generic
drugs did not work as well. It was never easy convincing the Dr. not to
prescribe generic versions. Sometimes we won, sometimes not.
Carole Barber

Yes, the procedure described in the NIH abstract is a very small
tube, but a surgeon described to me a procedure called a cervical
espophogostomy, not a miniespohogostomy that sounded like it would
be large enough for feeding much like the PEG.
But, I haven't found anyone who has had one, or knows someone who
has. The procedure must be very new.

care, Pat

Bill and others,

Did you know generic drugs are allowed a 20% variance compared to the brand name. This means a 100mg drug in generic form may be 120mg or 80mg.

Y'all were talking about toxicity of compounds. The break down of the word antibiotic is: anti- against biotic- life. Even water in excess amount is a poison which causes water notification. Many drugs are poisons and their action depends on this trait. Ergotamine an old remedy for migraine headaches is extracted from the fungus ergot. This fungus attacks wheat, and, when Europeans mad bread with the diseased wheat, many died until they found the cause.

If a person is going to ingest any substance, they should consider it a potential poison.

God Bless,

Jim Stark

Doug, I don't know exactly how this is done. The DR said the good thing about
the tube being in the stomach, you could have a larger tube and larger
feedings, less often. The other one is a much smaller tube and smaller area
to fill. So, he might require all night drip feedings and that will do him
for the next day. It will be permanent. I am not looking forward to all this,
but has to done. Thanks for the sites. I will check them out. Take care, Pat

I've seen studies on this concerning Parkinsons are there any I can show my
neurologist on MSA?
David Naro

Hello All,

I have seen several questions about potassium.

Bananas are a great source of potassium. For those on soft diets, the bananas puree easily.

God Bless,

Jim Stark

Click here: Q10 Clinical Trial

Hi Charmayne, Thank you so much for your reply. I will have some information when I talk to the Dr. and nurse. Thanks again, Ginger

Louise,

Send me your snail mail address off list and I will send you a Y-tube extension to try. We have a bunch of extras as we get a new one every time they replace the tube. We also get one a month from the medical supply house with our feeding pump supplies. You may be able to use this one to save the operation.

Removing the original and replacing it from outside is a 20 minute operation. The new G-tube is inserted through a hole and then a balloon is blownup inside with salt water to about the size of a quarter. Charlotte pops the balloons about every 4 months and we get them replaced in the doctor's office - pull out old, push in new. And blow up the new balloon - good for 4 more months.

Take care, Bill and Charlotte

Jan's peg tube is disintegrating and can you tell me wha hoppens at replacement? Insertion was a 10 day painful ordeal in hospital and the long rubber tube does not appear to pop out. It is placed in the upper position of 3 surgical choices and probably nothing fancy as VA practices thrift where possible. Someone on the forum kept cutting worn flanged end off to 2 inches. Might consider that with catheter leg bag joiner to avoid surgery. If I could find parts, (looking) if it would work long before we reach 2 inches.

LA Louise with another prospect for Uses of Duct Tape.

Bill:
Your comments are right to the point. Safire may have done us all a
service with his well written editorial. The issue needs to be front and
center to the public. whether or not they respond is another question.
Perry Sennewald 804-244-0018

Barb,
I sent you a private email three days ago and it was returned today
The original message was received at Mon, 2 Jul 2001 14:56:53 GMT
from adsl-138-88-42-140.bellatlantic.net [138.88.42.140]
----- The following addresses had permanent fatal errors -----
<ralsk@...
----- Transcript of session follows -----
<ralsk@...
Message could not be delivered for 3 days
Message will be deleted from queue
Are you back home? I'll send it again.
Bill

Ginger, Husband Fred has rattled and choked on reflux and phlegm for 2+ years. Dysphagia and dysarthria treatments, speech and stimulation therapy exhausted as no longer beneficial, neuro rxed Glycopyrrolate 1 mg tab thru peg 3 times daily 1 year ago to be used at my discretion since my husband is mute and has dementia. Postural drainage and cupped hand massage with head lowered low to upper back light pounding massage works well but for Fred/Jan requires 2 people because of rigidity and safesafe control requirements. A month ago the Home Health Agency phone superviising Md Rxed a mucus thinner and lung expectorant Guaifenesin 1 tab (nocontent info) 2 daily with glass (?) water 2 daily for congestion. I've used 2 suction machines at bedsides for years and was told that Hospice here stopped DEEP?? suction. Do you know what this is? You are using pneumonia preventing meds as well as mechanical devices? Where are you? Service offerings seem to vary as much as
patients problems. Hope this can help a little.

Best wishes for an easy and painless release.. LA Louise learning by comparison when to be assertive.

Waverley,

You wrote "How about Belladonna?" Belladonna is a poison. See this site:

http://www.alternativemedicine.com/digest/issue32/chimed.shtml

"The results of the California study of imported TCM patent remedies should alarm all health care consumers and prompt them to ask their health care practitioners: "Are the remedies you're recommending made according to GMP standards?" One hundred twenty-three (123) of the 260 remedies tested -- a full 47% -- were contaminated either with western pharmaceuticals such as the sedative diazepam, the analgesic acetaminophen; heavy metals such as lead, arsenic, and mercury; or other poisons such as strychnine, belladonna, and ephedrine."

Take care, Bill and Charlotte

From: Txbriteyes@...

Some people absolutely do pop vitamins like candy- but some people do not understand moderation either. It is important to warn that too much of a good thing can be bad. This should not discount its potential to be beneficial at certain doses. Everyone must remember the Carrot juice overdosing stories- people who turned orange!!! : )
Hi all,
Why I warn about knowing the source of supplements.
Bill

Hi all,
Why I warn about knowing the source of supplements.
Bill

Pat,

Charlotte improved greatly after the tube (with much therapy). She has had the tube for three years now.

Take care, Bill and Charlotte

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

Thanx Mary - I know, I can't kick this fever and I feel the same way - what else now !!!!!!!

I hope his mini strokes and seizures are not too frequent and can be controlled. That must be rough for you to watch that - casue you aren't sure just how serious they are.

Cheers :)
Waverley,
Yes, he takes 2 tabs (0.1mg florinef) twice a day along with the ProAmatine.
I really can't see that the extra proamatine is helping but Neuro wants to
continue. I know what you mean by not knowing where else to go, everytime
he has some "other" problem, seizures and mini strokes they put him on
another med.
Wish I could be of more help, Mary S.

Louise,
I was trying to remember if you were the person that used the VA in LA! They
should supply the commode for you as well as anything else like that without
charge. They also provided some rails for the bathroom without any hassle.
Jean (phoenix)

I have not checked out this free software yet but I thought I'd pass it along- could be interesting!!!

http://www.dynamicarray.com.au/

Mary, Warren takes 2.5 mg 3 x's daily? Is that with Florinef?

My physician said since I am maxed on both that the only next move is an additional med, he did not mention a name, but he said there are very bad side effects so it is something to think seriously about. I am not sure where to go from here and my next neuro appt is still two months off.

waverley
DEar Vera,
Most likely your commode will be bought as they aren't returnable. Our
insurance got ours for Warren. We have it right beside the bed (with a
throw rug under it) and it works when Warren can remember how to use it.
About your shower door, a visiting nurse recommended that I take our doors
off and use a curtain as it was easier for Warren to get in and out of. Did
so and does work well. When he can use it. His B/p is way down again and
would drop more if he used the shower.
You spoke of ProAmatine, Warren is taking 2 5mg tablets 3 times a day.
Still isn't keeping the b/p up all the time.
Wish you luck.
Mary S.

Waverley,
Yes, he takes 2 tabs (0.1mg florinef) twice a day along with the ProAmatine.
I really can't see that the extra proamatine is helping but Neuro wants to
continue. I know what you mean by not knowing where else to go, everytime
he has some "other" problem, seizures and mini strokes they put him on
another med.
Wish I could be of more help, Mary S.

DEar Vera,
Most likely your commode will be bought as they aren't returnable. Our
insurance got ours for Warren. We have it right beside the bed (with a
throw rug under it) and it works when Warren can remember how to use it.
About your shower door, a visiting nurse recommended that I take our doors
off and use a curtain as it was easier for Warren to get in and out of. Did
so and does work well. When he can use it. His B/p is way down again and
would drop more if he used the shower.
You spoke of ProAmatine, Warren is taking 2 5mg tablets 3 times a day.
Still isn't keeping the b/p up all the time.
Wish you luck.
Mary S.

Dear Pat,
So sorry to hear of Al's worsening problem. Hope the feeding tube will be
the answer.
Our prayers and thoughts are with you and Al.
Mary S.

Hi Ginger,
My name is Charmayne Bischel. My husband, John has MSA. His Hospice nurse got atropine drops for his drooling. They're actually eyedrops, but he uses them under the tongue to help with the drooling.
With (((Hugs)))
Charmayne
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
***"Charmayne's MSA/SDS Pages"***
http://freepages.health.rootsweb.com/~charmayn/
_ _ _ _
{\o/\o/} we are each of us angels with only {\o/\o/}
jgs /_\/_\ one wing - and can only fly by /_\/_\
" " embracing each other " "
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Hi, my name is Ginger . I just got a computer last month and when I figured out how to join, I did. My husband was diagnosed in '94 with Striatonigral degeneration or M S A- P for short. My question is-- does any one know of a good medicine that can dry up some of the liquid in his mouth which is there in great abundance some days. Also he has a rattle in his throat of liquid I can't reach with suction, and he can't get up or dawn himself. Claritin and something else have been suggested by his hospice nurse. Any input greaty appreciated.

tissue.
Here's a link to an alternative type of feeding tube placement:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uid\
s=10605913&dopt=Abstract
Or in two pieces you can cut and paste seperately into your browser:
http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=
Retrieve&db=PubMed&list_uids=10605913&dopt=Abstract
Be sure not to leave a space between them and don't hit return
inbetween pasting the two parts into the browser.
My understanding is that with the newer version of this, the
feeding tube is removed after two weeks and only reinserted for
feeding.
I've not spoken to anyone who has had this procedure, nor even
seen anyone who has had it done, except for one surgeon who
does them.
--
Doug in Greenbelt, MD USA.

Pam,
I keep reading it and reading it and still see this "Some of our patients
reported trying to cook and eat the dry seeds of fava beans but did not
experience any benefit. Burbano . showed that only the fresh green pods
of broad bean were rich in levodopa content, in contrast to that of dry
matter, apparently explaining the observations of our patients."
I'll get some and try them, without telling Charlotte. That will eliminate a
placebo effect. But none of these have the pods.
Take care, Bill

Oh, I should add that the NIH abstract is a cervical
MINIesophogostomy, but the surgery described to me was a cervical
esophogostomy, which sounds like a larger opening, and larger
tube.
Doug

Hello all, just a quick note. I've been spending my days at the hospital with
Al. The hip is doing well. He is in Rehab, but that old ugly MSA is rearing
its head. The DR says Al has lost all his body fat and now the body is
sustaining it self on his muscle. He is going to have a feeding tube put in
tomorrow. they will not know until they get in there if it will be in the
stomach or small bowel, because of previous surgeries and scar tissue. Poor
guy, he really fought against the tube, but he is just skin and bones now and
really has no choice! So please keep us in your thoughts and prayers. I will
get back to you soon, love and hugs, Pat

Perry,
That is my hope also. A public debate with a complete compromise. I too
believe that since the blastocysts are already here and doomed to destruction,
they should be the ONLY ones used for research. Scientists have already said
they do not need more, so let's limit it to these. That also takes away the
threat of cloning new blastocysts.
A complete and honest debate over the whole subject would be good for the USA.
It could refocus the abortion issue also and find a decent compromise there.
Many people in the USA do not want third trimester abortions. Very few people
want abortion as a birth control option. Other issues could be included such as
a better abortion law vs. contraceptive use. If we can prevent the sperm and
egg from getting together and cut down on abortions - is that better? All of us
have the right under the U.S. Constitution to our own private
beliefs. No one has the right to take that away from us - including Congress or
the President. BUT, we do not have the right to force our beliefs on others.
In spite of all the rhetoric about a "Christian" Constitution, our Constitution
(as well as the Declaration of Independence) was based on compromise and
tolerance, not a specific religion. Franklin believed strongly that the God of
all religions was the same God. Therefore God is referred to as "their Creator"
or "nature's God". If Bush chooses to Ban the research, to me he is forcing the
opinion of one religion over another - mine! He derives his "just powers from
the consent of the governed" - all of them.
This may become the biggest issue in the next election as patient's rights
groups are mobilizing, just as Pro-Life people did in the past. But by all
polls (including Christian polls) there are more in favor of the research than
against it. More Republicans are seeing this as a quicksand issue - Look at
Hatch and Lott. Republicans are actually drafting Bills in Congress to allow
the research so like the environment - this is not a single party issue. Bush
senior alienated too many voters and lost, will junior do the same?
Take care, Bill and Charlotte

from American Healthline, July 5:

ORGAN DONATION: Hospital Staff Requests Less Effective

"[P]ublic education" is needed, according to researchers investigating the factors that influence families' decisions on whether to donate a deceased family member's organs, to "modify attitudes" about organ donation. In a study appearing in yesterday's issue of the Journal of the American Medical Association, researchers interviewed 420 families involved in "donor-eligible" deaths at nine trauma hospitals in southwestern Pennsylvania and northeastern Ohio from 1994 to 1999 (Siminoff et al, Journal of the American Medical Association, 7/4). Overall, families of white patients, younger patients and male patients were "more likely" to give their consent for donation. After interviewing the surviving family members, researchers found that hospital workers spent "less time" discussing the possibility of organ donation when they "believed a family was leaning against donation." Also, if hospital staff broach the topic of donation "apologetically," families were less likely
to approve of donation (Snowbeck, Pittsburgh Post-Gazette, 7/4). However, the study found that families were three times as likely to donate if an initial request from the hospital staff was followed by one from an organ procurement organization (Journal of the American Medical Association, 7/4). Therefore, due to the "scarc[ity]" of organs, study author Dr. Bob Arnold, a bioethicist at the University of Pittsburgh, said it is "more important than ever" that regional procurement organizations "coordinate the recovery and distribution" of organs. The procurement organizations are better suited to answer family questions that hospital staff "shouldn't be expected to know," according to Arnold, such as how organs will be removed from the body and how the process will affect funeral arrangements (Pittsburgh Post- Gazette, 7/4). (Back to Contents)

As Jim said, we must look at the whole of the science of stem cell research. Each step is a step for other diseases - and many people here do have have additional diseases as well or know someone who does. Counterarguments also teach us about the stregnth of our own arguments. Only some of us here are trained scientists but the majority here are here to learn and share - so lay speak is just as important, if not more so.

This is from American Healthline, July 5th

WEEKLY MAGAZINES: Examine Stem Cell, Cancer Research

This week's issue of Newsweek examines the debate over stem cell research. The cover story -- which includes a photograph of an eight cell human embryo at three days and the headline "Cellular Divide" -- describes stem cell research efforts and the politics surrounding them. The "clashing views" over whether the federal government should fund stem cell research is creating an "embryo war," Newsweek reports, despite the fact that the debate is not about abortion. The article describes the potential "power" that stem cells have in treating diseases such as Alzheimer's and Parkinson's. As President Bush prepares to decide whether or not to allow federal funding for stem cell research, the article concludes that "[b]y banning the research, we uphold the most extreme view of the sanctity of life, but at a price: foreclosing the possibility of doing all we can to improve the lot of the living" (Begley, Newsweek, 7/9).
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Cancer Treatments
BusinessWeek's cover story, "The Birth of a Cancer Drug," chronicles the development of a "radical" cancer treatment called IMC-C225. Designed to halt the spread of cancer, but not "cure" the disease, the drug received FDA "fast- track" approval status last February. In addition to tracking the research efforts of Dr. John Mendelsohn, president of M.D. Anderson Cancer Center in Houston, who began researching the drug as a "targeted therapy" in 1980, the article also covers the funding efforts and the financial situation of ImClone Systems Inc, the biotech firm that is backing the research. BusinessWeek reports that the drug is "facing competition" from pharmaceutical firms that have also been developing cancer treatments. Also, there is "speculation" that a larger pharmaceutical company may purchase ImClone as C225 "moves closer to FDA approval" (Arnst, BusinessWeek, 7/9). (Back to Contents)

Perry,
Sorry! I read the Shy-Drager list on the web, and the bookmarks are on the
left as I read. I completely forgot that many people read individual e-mails
or the digest form! I'm sure many folks are confused by my comment. I

Seeding the World With Stem Cells

Brian Vastag

Previous Vol. 286 No. 1,
July 4, 2001

WashingtonAn Australian team offering embryonic stem cells to academic researchers says that they have been flooded with requests since announcing their plan this spring. More than 50 researchers from across the globe have asked for cells from the team at Monash University in Melbourne, led by Alan Trounson, MD, a professor of obstetrics and gynecology.

The altruistic act is meant to jump-start research that has taken a hit from the uncertain status of National Institutes of Health (NIH) funding, said Trounson's colleague, Martin Pera, PhD. "From the beginning, we've had the view that widespread dissemination [of stem cells] to the academic community at large is essential," said Pera.

Because establishing viable stem cell lines from embryos is tricky, requiring researchers to pluck single cells from days-old embryos at just the right moment, Pera said that it makes sense for a few centers to act as cell banks, allowing other researchers to focus on the biology and therapeutic potential of the cells.

The Monash group becomes the second in the world to establish embryonic stem cell lines. A privately funded University of Wisconsin Medical School spin-off, WiCell, led by James Thomson, PhD, began offering such cells to researchers last year, and they too have received several dozen requests. Thomson said that a group at the University of California, San Francisco, School of Medicine and another in Israel are also close to establishing their own cell lines.

Adding the Monash cells to those already available from WiCell means that embryonic stem cell research can move forward without destroying additional embryos, said Pera. "A lot of people think this research is going to involve the continuing, ongoing destruction of thousands and thousands of embryos. There's no need to envision that at all. We think we've probably made as many cell lines as we need."

In culture, embryonic stem cells divide indefinitely, like biological perpetual motion machines. A single embryo, if handled properly, can spawn millions of pluripotent daughter cells, all genetically identical. The cells achieve immortality by producing the enzyme telomerase, which keeps them young by repairing the telomeres at the tips of each chromosome. In normal cells, the telomeres shrink with each cell division, until after a few dozen replications they reach a stubby stage that triggers cell death. Embryonic stem cells avoid this fate.

This almost magical capacity for unfettered expansion means that enough cells already exist to satisfy demand, said Thomson. "I completely agree with Martin, we have enough for basic research needs. The cell lines are remarkably stable. They can be frozen and thawed multiple times."

At WiCell, master stocks of embryonic stem cells sit frozen in hundreds of vials, chilled by liquid nitrogen. They can be thawed, shipped, or regrown into additional stocks. The center maintains five separate cell lines, each derived from a different embryo, whereas the Monash group maintains six lines. With a 30% to 50% culturing success rate, these 11 strains were derived from about 30 embryos [INLINE] a small number to seed the world.

OPPONENTS CREATE A CHILL
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But that's not how opponents of the research view it. "In a moral sense, it doesn't matter if you kill one, 100, or 1000 embryos," said David Stevens, MD, executive director of the 14 000-member Christian Medical and Dental Association, who regards each embryo, regardless of whether it will ever be implanted in a uterus, as a person. He compared the destruction of embryos to harvesting organs from prisoners, calling both a function of a "utilitarian ethic" that disregards the value of human life.

So far, vocal opponents like Stevens are winning the federal funding battle. Last fall the NIH indicated that it would fund embryonic stem cell research that met certain guidelines, but the Bush administration halted any research funding [INLINE] or even any reviews of research proposals [INLINE] until it completes a legal and scientific review of the NIH guidelines.

In the interim, several stem cell researchers have stepped forward to say that the administration's review, dragging into its sixth month, has had a chilling effect on the entire field. Douglas Melton, PhD, chair of the department of molecular and cell biology at Harvard Medical School, said that the consequences of stem cell politics include "young and old investigators being told to stay away from this area. Damage has been done."

In fact, just three research groups applied to receive NIH funding in this area this spring, a sure sign to Melton and others that researchers are being driven away. "Why would someone invest three months in writing a grant application if they didn't know funding would even materialize?" he said.

This chilling effect has spilled across the oceans all the way to Australia. Because Trounson and Pera wanted to collaborate with researchers in the United States, they tried to ensure that their cells met the NIH guidelines. So, they applied for NIH funding in March, knowing that the first step would be a certification of whether their cells met the NIH rules. When the Department of Health and Human Services (DHHS) halted even this preliminary certification, Pera said he withdrew the grant application.

To satisfy demand for cells, the group is trying to set up a production laboratory with private funding from Embryonic Stem Cell International, a coventure of the Singapore Economic Development Board and a group of Australian investors. Pera said funding talks are under way with Australian health agencies, but nothing is final. (Rules for embryo research vary by state in Australia, with Monash's home state of Victoria providing the most restrictive law. Researchers are forbidden from using or destroying embryos; the cell lines growing at Monash, therefore, were seeded with stem cells gleaned from embryos by researchers at the National University of Singapore.)

While Monash pursues its cell banking facility, a lawsuit filed in US federal court by Thomson, Trounson, Melton, a handful of other stem cell researchers, and actor Christopher Reeve awaits a response from the DHHS. The lawsuit claims that the delay in reviewing stem cell grant applications is illegal and asks to get the process back on track. A spokesman for the DHHS said that he could not comment on pending legal issues, but the department is required to file a brief with the court. The plaintiffs hope that these documents will at least bring to light the internal machinations involved in the review moratorium.

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© 2001 American Medical Association. All rights reserved.

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Bill:
You mean you really get a whole 7 hours sleep? Gee you must be just
beautiful, even for a grumpy old man.lol I'm lucky if I get four at
a time, at night. Fred is up a few times at night. He never sleeps a
full 7 hrs. So what is your secret to getting Charlotte to sleep a
full 7 hrs?
Yeap! I talked to Barb the other night. Would of last night ,but she
was in bed early for once. She did try to IM"S yesterday afternoon,
but I was helping Fred and when I came back in, she had gone offline.
I've talk to a few of the other girls to. Barb P, Judy and another
girl , but she isn't on the group anymore. Didn't know that I could
get another online with the IM's other then the ones on Aol until
Barb in Texas got me.Goes to show how much I know.lol
Yeah! none of that, I know what your thinking.
Take Care
Vera

Mary,

Go to:

Dr. Lieberman keeps recommending these to patients. Check out the
websites he mentions below.
Regards,
Pam
Subject: fava beans
From: "Anonymous" <askthedoctor@...
Date: Tue, 3 Jul 2001 18:38:38 -0600
X-Message-Number: 2
Dear Gale
Please read the following about fava beans
http://parkinson.org/favabeans.htm
to order fava beans click on below
http://shamra.com/food/foodsearch.asp?subcat=&desc=fava+beans&cat=
abe lieberman
I have been actively searching out a distributor of fava beans in my =
area and have found a very limited supply. Many people have not heard =
of the possible benefits of the fava beans to Parkinson's sufferers. =
Would you please explain again what it is that fava beans have or =
possibly can do to help relieve the effects of this disease? Then, =
hopefully, I, and other PD patients, can present this to our local =
grocers or speciality food suppliers in order to have an available =
supply. Also, what is the recommended amount and how often should they
=
be eaten? =20
Thanks So Much!!!! Gale

Vera,
Grumpy old men need their beauty sleep more than you gals, I guess. :o) I
yell at Barb all the time to get more sleep, just ask her. I try to sleep
from midnight to 7 AM - doesn't always work as I need to sit down and relax
for a hour after Charlotte goes to sleep. Once in a while I play chess with
a person in New Zealand over the net. We both like to play 10 minute time
limit games.
I was chatting with Barb last night and she mentioned chatting with you (in
the morning) :o) BUT she didn't tell me it was that early in the morning. On
Sunday's chat session, we had an interesting group - Jim Taylor from Guam was
on (he gets the prize for early bird it was 5 AM Monday morning his time),
Pam and Jim Stark were on also.
NOTE to all - It is rare that anyone comes on the chat at exactly 3 PM EDT,
but often someone is there as late as 5 PM EDT. So just hang around for a
while - check your email, etc. and check every few minutes. If you see
another name in there just send a message and wait they may be checking mail
or surfing the web.
Take care, Bill and Charlotte

The following is both an informative and thoughtful editorial on Stem Cell Research from today's New York Times:
http://www.nytimes.com/2001/07/05/opinion/05SAFI.html
July 5, 2001
ESSAY
Stem Cell Hard Sell
By WILLIAM SAFIRE
Related Articles"
Expanded Coverage
</library/opinion/index.html
Readers' Opinions"
<http://forums.nytimes.com/webin/WebX?50@@.f20ac08
WASHINGTON In the unfamiliar company of bioethicists, George W. Bush is wrestling with a decision about stem cell research that could define his presidency.
The most exciting scientific news in recent years is that the human body may have the capacity to regenerate itself. Biologists were stunned: degeneration is not inexorable. The earliest building blocks of the body cells not yet destined to become a nerve, muscle or any of over 200 varieties of cell may soon be directed to repair organs that are diseased and to rejuvenate those that are wearing out.
This would mean longer lives with much less suffering. Then why doesn't the government plunge ahead? Delay means debilitation and death to millions of victims of Parkinson's, juvenile diabetes and scores of other diseases and untellable hardship to their families.
There's this hitch: The most flexible and versatile stem cells appear to be those taken from excess blastocysts (groupings of under 30 cells just becoming embryos) created in the laboratory for infertile couples, frozen and scheduled to be discarded.
What's wrong with that? Only this: The doomed blastocysts, which have never been inside a person, are potential people, however remote that potential. Many whose consciences forbid abortion believe that government should give no moral or financial backing to anything that impedes the development of new life no matter that its purpose is the saving of other human life.
That minority's views consistent with its belief that life begins at conception cannot be airily dismissed. It argues that scientists may find, in time, that stem cells can be developed from adult cells rather than blastocysts. With populist resistance growing to genetic manipulation, opponents of embryonic stem cell research are not alone in being troubled by the related chimeras of cloning.
However, that bloc is split. Some of the most ardent opponents of abortion see life-saving stem cell research as eminently "pro-life." That's why most Catholics are reported to favor financing this research.
The great majority of scientists are less conflicted. They reject a compromise proposal that would give a single private company, which has patents on a few stem cell lines, a kind of monopoly. Scientists like Irving Weissman of Stanford were outspoken at a recent meeting at the National Academy of Science in describing the adult-cell alternative as a delaying tactic when the need is urgent. Many hope President Bush will give a hearing to Leroy Walters of Georgetown's Kennedy Ethics Institute, who made a thoughtful presentation.
(Disclosure: When not vituperating for a living, I head a foundation that supports research in brain science, neuro-immunology and immuno-imaging. We're exploring studies in neuro-ethics, surely a growing field.)
The decision facing Bush is ethical, political and practical. If ethical philosophy predominates, "the greatest good for the greatest number" would push him in the direction of encouraging stem cell research. Politically, public support for it will grow as advocates for the most directly affected diseases press up from the grass roots. Though the American Heart Association flinched, others will take greater heart.
The practical argument has the immediate puissance. This research will go forward with or without Washington's blessing. If we drag a foot, Britain, France, Sweden and Canada will take the lead. Private resources will flow to potential profit centers without public participation in ethical decisions.
Bush's way on domestic affairs is usually to seek a common ground, and the betting is on some fuzzy compromise: medium support once removed to duck controversy, and a fervent hope for luck with adult cells. But it would be better to be bold.
In a prime-time speech, he should announce his support of embryonic stem cell research and the careful oversight called for by scientists and doctors who are disinclined to play God. At the same time, he should convene a White House conference on bioethics; that would focus world attention on both the opportunities in genetic exploration and America's awareness of the real dangers of the slippery slope to Frankenscience.
Think anew and act anew. This is a big one.

Paul & Mary Jo
My husband Fred has been on florinef before for his b/p but had to go
off of it because of his legs and feet would swell. The doctor put
him on pro amatine one of the meds that other have told you about. It
has kept his b/p up and seems to be do what the doctor wanted it to
do. Stop the b/p from dropping when he stands.You may want to ask
your mother doctor about this med.
Take Care
VERa

Just wanted you to know that I heard from Anne. I know some of you
like to hear about her still. Her and Tony both had the flu and now
she has bronchitis. She still doesn't know about the EEG test , they
seem to be lost. Anyway that is the new's my the land down under.
good day.
Vera

http://freepages.health.rootsweb.com/~charmayn/symptom.html

http://www.shy-drager.com/

http://www.mc.vanderbilt.edu/gcrc/adc/autonomic.html

http://accesswave.ca/~pbower/

http://freepages.health.rootsweb.com/~charmayn/

Barb in Arlington, Texas [INLINE]
--
"We have quit learning if we do not feel a little more ignorant every day." W.D. Tammeus

How can I get to bookmarks for shydrager group?-- Mary

Wow Bill, I really thought it might be my imagination. I never thought about the spasms and heart....you just made my day (smile)

later and hugs,

cindy

Well I hope I can handle and spot the small things before they get to
big also. I've gotten alot out of this group, so far been doing
pretty good with what I've learned from all of you.
The commode didn't come yesterday, so guess it will be tomorrow. I
guess we will try that for awhile and see how he does with that. I'm
going to take off the shower door's and put it in his shower and see
how it works there.
First thing I want to fine out when it does come is if it's purchased
or a rental, don't want it to be like the w/c , you know the one that
I'm still trying to get the insurance to pay for. I talked to the
doctor about that, and he said he didn't know about this company. OK!
So did you make it to the dentist? You didn't say.
Oh! the pro amatine is to help Fred's b/p from dropping to much.
Work's most of the time , till this last week . B/P is up to 120/70
now that is more like it.
Take it easy Louise and thanks for the help
Vera

Bill:
You need to yell at Barb in Texas, she was up later then me. I know
because WE were talking online. Gee! you didn't want me to run out on
her. You know us and the late night club. We're up while your in bed
sawing loggs and getting your beauty rest.
Must be nice
Vera

Potassium loss is a known side effect of florinef, and most doctors
monitor potassium regularly for patients taking this medication.
Aside from increasing salt intake (many take salt tablets, with or
without florinef) there is another medication, proamatine (also known
as midodrine) that is used to increase blood pressure. Unlike
florinef, proamatine is short acting and acts by affecting the size
of the blood vessels, as opposed to florinef which affects blood
volume. Proamatine must be used carefully because it can cause blood
pressure to be too high, and it cannot be taken within 4 hours of
bedtime or before lying down for a prolonged period of time for that
reason. I am not aware of any other side effects, but of course you
should check with your mother's doctor for more information.
Carol & Rob

Mary Jo and Paul;
Hi again, my heart goes out to you, I feel your anxiety, this is a very
tough road to travel but it is do-able with support and good advise. "You
ask where do we start?" You started years ago, with loving your Mother. Just
keep on doing, one thing at a time. Don't over whelm yourself, it helps no
one. Remember to breath and smile.
My mother, Mable is responding extremely well to water therapy 3 times a
week. I wish everyone that has this condition would have the opportunity to
exercise in the water. My mother actually gets strength from drinking water.
Before she walks or even gets up she has a drink, while we are playing in
the water, walking or exercising. Water is magic for mom.
I have giving up the opportunity to be employed right now, because it is so
important for mother's quality of life, TO GET OUT and exercise. She has
always loved to swim, growing up next to a river in Hondo, NM. We are in the
pool at the YMCA for over an hour, I then scrub her well in the shower and
wash her hair. She loves birch oil for relief of pain, I massage on her back
and arms, lavender for relaxation. Then it is time to get her dressed. The
tight compression hose go on so much better if powder is used on her feet
and legs. A good time to do range of motion on her ankles. After she is
dressed we finnish off with a hair style to die for. I do my mother's hair 3
times a week and another sister does it on Sundays. Mother is the sharpest
looking woman in the Nursing Home. She is able to have long beautiful finger
nails, now that she doesn't do dishes. The aids are jealous of her nails,
and of course she loves bold colors. I have even bought decals for her
nails, real cool! Sometimes just getting outside and breathing fresh air
helps her feel so much better. I really believe the medical, physical,
spiritual and emotional all needs to be taken care of. Taking care of
Mother is a lot different than caring for a child, because Mother needs to
be an individual at all times. I have to do for her without over doing for
her, in thought or action. I sort of have to be invisible even though I'm
very there for her. I think the more I write the more I'm confusing myself,
so I'll quit for now.
God Bless and keep your chin up, but when it falls let us help lift it.
George Relles always has some humor to share.
Mary Ann-
From: stovall@...

Hi stovall@...:
My mother, Mable, was on both florinef and proamatine(midodrine) to raise
her BP, besides wearing jobst, the waste high hose during the day. The
proamatine caused her scalp to itch which was driving her nuts. Anti itch
shampoo did not help, nor did anything else, She was taken off the
proamatine and the florinef was increased. Your mother could take potassium
tabs regularly to maintain her potassium level. If the florinef works I
would consider trying to regulate the K+, rather than eliminating the
florinef. Make sure she is getting enough water!!! Water helps a lot in
raising the BP.
Mary Ann-
From: stovall@...

Hi all.
Saw this today and thought I would add a little background. Today they
are going off public display.
http://dailynews.netscape.com/mynsnews/story.tmpl?table=n&cat=51180&id=200107041\
317000111087
About two weeks ago I was attending a meeting at NIST (National
Institution of Standards and Testing) and we were given a tour of the
shop where they are working on the new holders for the pages of the
original U.S. Constitution. The reason they are changing the holders is
that having the parchment in contact with the glass was slowly wearing
the ink off the parchment as well as the glass starting to go bad. The
new holders are very high tech and have an instrument built into the
holder to detect any leakage in the holders
Read all about the work at:
http://www.nist.gov/public_affairs/Charter/charters_of_freedom_project.htm
They have links to show the holders. They will be back on display in
2003
Take care, Bill

Paul & Mary Jo,
I'm sorry your Mom has been diagnosed with Shy-Drager Syndrome. You
have come to the right place - we have lots of information and this
group is very helpful. Most of us are not medical professionals, but
concerned patients and caregivers like yourselves who want to find
out more about this illness and to help others.
The best place to start is the "bookmarks" link at the left side of
this page. There are loads of links to general descriptions of SDS
(also knows as Multiple System Atrophy) and to symptom management
tools and medications. Read as much as you can, then come back and
ask questions. NO QUESTION IS STUPID! Sometimes even us non-medical
types can fall into jargon. If you don't understand, please ask.
I am assuming that your mother is being treated by a neurologist with
some expertise in movement disorders and/or autonomic failure. If
not, try to get someone with this type of expertise. You mentioned
Duke Medical Center, so I'm assuming that kind of care is available.
Anyway, that's where to start. But come back and ask questions -
you'll have lots! and we'll be glad to help.
Carol & Rob Langer
Lexington, MA

Our doctors believe our Mothers low potassium is due to her taking
florinef. They are getting ready to take her off the florinef which
is controlling her blood pressure but I am not sure what they will
substitute in its place.
Does anyone have experience with medications to control blood
pressure without the side effects of low potassium. thanks

Our mom was diagnosed with Parkinsons Plus three years ago at Duke
Medical. She has been going downhill since. Quality of life is very
poor and she is only 70 yrs.
She went into the hospital last week in pain and feeling awful. She
has a grade 4 urinary infection, potassium levels out the bottom and
had to have her gall bladder removed.
While she was ( is ) in the hospital her neurologist removed her from
her senemet ( sp ) to observe her. After two days he diagnosed her
with Shy Dragger. We had suspected this all along but have had a
difficult time opening eyes and ears.
Now that we have found this group -----Where do we start?? Assume we
know nothing and pls give us the basics of dealing with this
disease. Our goal is to improve her quality of life - somehow -
mentally and physically.
thanks in Advance
Paul and Mary Jo

Beautiful. Thank you, Sheila.

Barb, who is proudly flying the flags today.

[INLINE] [INLINE]

94' in Texas

--
"We have quit learning if we do not feel a little more ignorant every day." W.D. Tammeus

takes a bit to download .... but lovely

sheila

Subject: Happy The 4th of July- Amen

Click here: The 4th of July

AMEN

Barb,
The actual link is only this:
http://www.myrightstart.com/independence.htm
And you need the flash plug-in to see it.
Take care, Bill

http://www.WorldNetDaily.com/frame/direct.asp?SITE=www.myrightstart.com/independ\
ence.htm

Dear Vera & Fred, These are been there had that suggestions you might try.
Jan was marathon runner with naturally low bp but even helps and monitoring
did not prevent falls. Those bedside potties were really hazardous. We
tried anchoring that frame to redone bath floor and insisted on open doors.
If Fred DOES try to get up, turn and flush he'll invite a hard fixture
landing. Safest way found was wheelchair with holer opening, plastic bags
and restraints. Wouldn't tip over and held his weight. Despite warnings, if
Jan saw something he wanted across the room he'd up and pitch like Ralph.
Dangle legs at bedside and start practicing transfers or take bp lots and
insist on no independent roaming at 80/50 or his slump numbers. Takes only
30 seconds to go down and often hours to get him up unless your 911 is
nearby and reliable. Also, if you don't have Durable Medical Power of
Attorney and Fred says no to ambulance er transport, they'll not take him
until he's persuaded or passed out. Police, same, get ready for the worst
and hope for the best. Might help to start learning about gloves and uti,
bronchial, skin germs eradication if you want to stay at home. I learned
lots the hard way.
That is probably why I have a new used car in my mouth instead of the
driveway. Doctors won't tell you a thing about nursing precautions-no two
for one or double visit prescriptions if you are VA or Medicare --ER visits
are most welcome as they can keep a hospital solvent while preventive
office calls show little profit.
Jan was never given pro-amatine or Midrodine. What do they do? I did give
him a salt fix and lots of piddly kiddly drinks before bedtime with super
pads. Kept the rails up --worked for a while.
LA Louise hoping you can anticipate and handle small problems before they
grow larger.

It does get scary but so far I've not had any major problems.

Are you getting any feet and ankle discoloration? I am and no one is giving me an explanation. I guess it is related to the autonomic failure as the veins arteries and valves (endural) are controlled by the ANS. I was thinking maybe I could have another problem going on as my cardiologist doesn't seem to want to answer my questions about this creeping discoloration.

I know that it should be unrelated but............after I started taking baclofen I seem to have less heart related episodes. I tried to lower my dose of baclofen and ended up with severe tachy. Baclofen works on the GABA receptors in the brain so I am wondering if it keeps the tachy in check.

later and hugs,

cindy

Pam already beat me to the follow up on this but it really is
such a good point. When you released Colet to write about Al
she was able to tell us so much more about his case and her
practices than you were able to. Paraphrasal and second hand
information are just no substitute for hearing it directly from
the actual expert.
Besides, skilled though she may be, Colet is an RN and doctors
will give short shrift to what she has to say. They will sit
up and take notice of what other doctors have to say, especially
the doctors you and Al have seen, given their personal expertise.
It may surprise you, but people do sometimes give ficticious
medical histories to doctors. Muchausen and Munchausen by Proxy
are two known conditions that lead to this but they are only the
tip of the iceberg. So if you have an unusual story to tell, most
Doctors will simply disregard it unless you have other Doctors to
corraborate it.
It wouldn't be difficult to do. All you would need to do is use
your copy of the release you gave to Colet and Townsend Newsletters
as a model and substitute the names of the other doctors and send it
off. That would probably take less time than one of your posts to
this maillist, and it would do so very much good.
Also, and I realize this may have escaped your attention, you do
have some critics on this list. They can point to your decision
to release some persons to speak about Al's case, while witholding
consent from others as proof that you are manipulating the system
to present a distorted view. I have to admit that I don't know, but
in all honesty, I have to consider the possibilities.
Clearly you and Al have the right to release whom you choose
and for whatever reasons you wish. But we all have a right to
speculate among ourselves as to why.
You can render that speculation moot.
Good luck now.
Doug

Vera,
:o) Did you fall asleep at the keyboard? You wrote me at 1:43 AM my time (I
was sawing logs at that time) and your next post was at 4:05 AM my time (I
was still sawing logs :o) These youngsters, partying all night :o)
Get some sleep!
Have a safe Fourth.
Bill and Charlotte

Timo,

Most of us are only really familiar with MSA (newer name for Shy-Drager). But the others aren't as bad as MSA. MSA is crippling, but people are living longer with it all the time. Exercise will help keep movement with any of them and should be started while the patient has as much movement as possible. Look for exercises that work on stretching the muscles and joints - like arthritis exercise. A lot of people recommend exercising in water to help balance and keep pressure on the body.

Take care, Bill and Charlotte

Gee, you beat me to the punch
Doug

Today we went to the hospital to get the results from an EMG scan and a B12 defiency test (Schillingtest). The EMG test acknowledged what we already knew: no increase in heartrate after exercise.

The Schillingtest didn't brought up anything except that the figure was low. Also the punction of the hipbone resulted in low values without any cause.

In a few weeks Anne will have a spect scan on dopamine and neurons in the academic hospital in Amsterdam. The nerve specialist told us that deduction of shy drager is one of the possibilities with that test. He also told that Shy Drager is the worst form of this disease and that less possibilities were still open. He did agree that failure of the sympathic nervesystem is obvious, in comparision with all Anne's complaints. Can anyone tell us more about the possible other diseases?

Best regards,

Timo

Same news item as Jim just posted this morning. This is very interesting and work needs
to continue on all fronts to figure out how to regrow nerve cells.

Regards,
Pam

Jim,

Remember, there is no mention of growing dopamine producing neurons here. Neurons have actually been grown in the past from bone marrow stem cells, BUT not dopamine producing neurons. In addition - there were no animal tests involved, pluripotent stem cells grown into dopamine producing neurons HAVE cured mice of chemically induced PD.

An analogy - you can build a bridge from Legos (TM) but I would hate to drive a car across it. You can do certain aerodynamic tests on shapes in water and even glycerin, but even applying the Reynold's factor, you can NOT extrapolate that to every situation in air. Even researchers working on adult stem cell work agree strongly that all forms of stem cell research need to continue. IF adult stem cells can be used, we are still at least ten to twenty years away from human tests with them. We can begin work on humans in two to three years if the testing is not banned at NIH. The best possibility for a cure in PD, ALS and Juvenile Diabetes at this point is pluripotent stem cell research. We do not know about MSA, but MSA is tied to PD more each day.

If the USA is really worried about "killing children", then we should go back and look at abortion again. Abortion IS LEGAL in the USA. Estimates by religious organizations put the figure at 1.5 million per year in the USA alone. Yet instead of looking at that, we are looking at Banning the use of about 60,000 left over in vitro blastocysts TO SAVE LIVES. Once an embryo reaches the fetus stage (four to five weeks), I do see the argument that is is "human". I can see some argument that the embryo is "human" but have problems with calling it a "human being" as it is not completely "programmed" to become a total human being. There is some indication that it takes at least four moths before it has all the proteins it needs from the mother before it can develop fully into a human.

However, an in vitro blastocyst has never been in a womb and only has about a 20% chance of attaching to the womb if placed in the egg donor mother. It IS illegal for it to be placed in another womb at this time and would NOT be grandfathered for the existing blastocysts if the law was changed at this time, as the donors signed agreements that the eggs could only be used for the mother. These eggs WILL be destroyed if not used.

Now for politics. If you drop a bomb, how many humans are "killed", if you execute a person are they not "killed"? We in the USA consider war and execution "killings" to be for the common good of all men - right? Then why is ``It is not pro-life to rely on an industry of death, even if the intention is to find cures for diseases,'' not for the good of mankind? That was the quote of House Majority Leader Richard Armey (R-TX), Whip Tom DeLay (R-TX) and Republican Conference Chairman J. C. Watts (R-OK). Isn't war "`It is not pro-life to rely on an industry of death, even if the intention is to find cures for'' mankind?

We are talking about an undetermined technology shooting down missiles which is considered iffy at best. We are talking about trillions of dollars on this research at the same time we can not afford $100 million for PD research OR even PT and ST for MSA patients (of more than 30 days at a time). If we are spending all our money protecting a quality of life (for the pursuit of happiness) and yet many do not have that happiness because of disease where is "pursuit of happiness"? Could that be compared to parents buying an expensive home and both working too much to pay attention to their kids?

Let's think about responsibility and logic here folks. Add the fact that all polls show 62-70% of the people in the USA for pluripotent stem cell research and only 47% for execution. Seems to me that the Catholic Church is also against execution.

Take care, Bill and Charlotte
(who can not get PT/ST unless the therapist can show "definite" improvement)

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

Marge, I don't understand your hesitation to not do as Doug suggests. I
think it would lend considerable credibility to your story if Al's
neurologists commented on his neurological symptoms as they observed
them both before and after Colet's treatment. Other neurologists would
be more inclined to work with acupuncturists like Colet if they could
read first hand accounts of his symptoms from his doctors. I do think
eastern and western medicine can work hand and hand to help more people.
Regards,
Pam

Hell all,

Attached is another article on regrowing neurons. Beleve it or not, this method is supposed to be better than embrionic stem cells!

God Bless,

Jim Stark

Great article Don, I've added it to our bookmarks page under "Featured

Hello all,

Attached is a news clipping on a new method of growing neurons.

God Bless,

Jim Stark

Don
Thank you for the web. Took a fast look around and I'll look more
tomorrow, but looks like it has a lot of things that will be of help.
Take Care
Vera

Hi Verl:
I have gotten the E mail that you send to me and I have wrote you a
very long letter back, but try as I may , I keep getting a note in my
mail that it won't go to you, keeps telling me user unknown. I could
be doing something wrong, it wouldn't be the first time for me,
heaven knows, but if you would send me your e mail address , I would
be glad to forward it to you for the 5 time.Really I kept trying.
Can't say I don't try. Anyway your lost out there somewhere and I
would love to fine you.
Won't give up
Vera

Bill:
Ok, smarty, you found her name, so I overed looked it, but what can I
say. I'm half a sleep.
Sorry Verl.
Take Care
Vera
with one eye half closed or is it half open?

Both times my husband blacked out was because of a every low b/p for
him , he did come around after about 5 minutes, but wasn't really
talking or knowning what was going on. In the case of your husband I
would check his b/p, but 20 minutes is a long time to black out and
not come around. I would do just what you did, get him to somewhere
for help and call 911.
Life sure isn't a bowl of cherries is it?
I know you have a name, would love to know it.
take care ?
Always Vera

Mary:
Glad to hear Warren is over his Pneumonia and I know it had to be
every scary when he had his mini stroke. I hope that you are getting
the rest you need and still are reading.
About the only reading I'm getting right now is reading the labels on
the med bottles. I need to fill the medport again. Had one of the
nurse ask me about the medport when it went off in the hostipal and
she asked what it was, I tolded her it was time for Fred's meds and
asked when they were going to give it to him. She said she would
check when he was going to get it,but wanted to see the medport
first. Made sure they gave it to him on the times we do them at home.
Need to keep them on their toes at times, but they were nice about
it.
Thank Goodness, I had enough going on at the time.
Take Care Mary
Hugs Vera

Barb:
looks like you bee-ing very buzzy today. How is the weather in Texas?
We got it hot ,hot, hot.
Thanks for the bear earlier. It was bearry cute.
Fred has only three doctors and when things happen I wonder "who you
going call? I got to get the right one sometime. right?
Take care
Vera

Louise:
Fred has his low b/p when he get's up to go to the restroom in the
middle of the night. Now the doctor is going to get him a commode so
he won't have to go to far. With showers now Fred can't take hot
one's, will leave him every weak, so we're doing cooler ones. Seem's
like with this illness you think you got a hand on it and thing are
going smooth and then suprise it all changes again. It keeps you
guessing that's for sure.
So how was the dentist? I need to go in a few weeks , you can come
and hold my hand if you want, I just hate the dentist.
Coming from a every hot, hot california.
Take Care
Vera

Barb:
Scary isn't the word for it, right now I don't have a good one. Just
don't like those black outs at all. This morning he almost went down
again,but got him to a sit before he did. Most of the time his b/p is
120/70, but this drop to 86/50 is really low for him. I hope that the
incease in the pro amatine will help get it up soon. Don't we just
have our hands full with this illness. Never know what the day will
bring do we.
Take care
Vera

With your husband going to ucla to get his Dx you must be in the L.A
calif area. I live just out side of L.A in the city of Walnut. My
husband is Fred he has the illness and is about the same age as your
husband 60 and he has all the same things that your husband does. If
you should want to talk or ask any question , just e-mail me at my
address and I will be glad to help with anything that you may needed
to know about. I could also give you my address and phone # if you
would want to talk. Please feel free, my name is Vera.
Welcome to the group
Vera

From: dscaprette@...
Date: Mon Jul 2, 2001 10:32 pm
Subject: Pam, Re: MSA and Al
Would Al (or you for him if you have POA) consider waiving
confidentiality to allow Drs Nance, Ashe, and Bushara to
discuss Al's case?
I don't know if they would be interested in making any public
statements, but if they are, I'm sure we'd all like to hear what
they have to say about his case.
Doug
Doug, no, this I would not do. Colet Lahoz is the person who with her knowledge of Acupuncture,and Supplements has reversed many of the MSA problems that Al had. Colet is the person who has made his case known and given hope to many. So of course any additional information will come from Colet or myself at this time. By making ourselves available to the Doctors we hope to increase awareness of Alternative Medicine. Marge

Yes I was dx 2 years after my oldest was born. We had two more children after that. At that time we did not know what any out come would be with sds. Had we had known we would not have had any more children. Don't get me wrong we have 3 of the most wonderful children but what they are seeing and going through now is very difficult not only for them but for us.
I have a very caring husband and has been at my side and know that he always will, but if I had married the husband that would not stay and stand by me I would and the kids would not be together now. My 2 other pregnancies were very difficult. I was high risk both times and almost lost our 3rd child. Looking back we feel that msa had a lot to do with it.
The kids are teenagers now 19, 16 and 13. Let me tell you that they are very much teenagers and young adults. I do not want to take this time away from them, but they have to understand things that others can't.
I have been very lucky and the msa has progressed very slowly up until 2 years ago and things are changing faster. The kids our 3 dogs and my husband has kept me going and has given me reason to get out of bed in the morning, but there are days when getting up just gets hard to do.
One does not know how fast msa will progress, it's any bodies guess. What a game to play. All I can say is it could be difficult. You will need a loving caring family to help you. Also if it Gods will it can be done.
Just some of my thoughts,
Liz (in El Centro)

Hi everyone,

The attached site is a column written by Jill Selby. She called me last week requesting basic information.

You might find it interesting.

Don Summers, President
SDS/MSA Support Group
http:/www.shy-drager.com

http://parkinsons.about.com/library/weekly/aa062901a.htm

Yo, Waverly! I'm always late with my kisses and have engineered multiple freeway stacks in thoretical Hades if that sort of thing floats your boat. Thanks for persisting in educational offerings. No Unitarian verbal free for alls here and Jan allows me little time between demands. Keep sending tho I decline. Reading posts is preferable to TV for many of us.

My immigrant grandfather was a knacker come butcher come studied veteranarian whose horse and wagon backdrop graced the family picture. Pet animals were prayerfully eaten without regret. Whether unborn chicken dinners are fried in lard is of little interest to me now but nursing procedures and skills in videos begged, borrowed or stolen would be great. Illiterates usually have VCRs and aides inservice presentations are sales hustler presentations masquerading as care.

Keep stirrin thangs up and thowin em in the pot. Treat yourself to something special tomorrow. We're having canteloupe with ice cream after the indoor peg and pig picnic. LA Louise in Sauna Springhill.

Hey Jim, Maybe I have a real live certified Lady Doctor who will housecall Jan in Springhill. She's Chinese and new here, an internist, I have a consultation appointment for tactful academic son so's to check each other out.

SENDING YOUR TWO PAPERS IN ADVANCE!! Please accept Vera type footkissing homage.

Our phone and fax VA doctor was in an auto collision and out for past three and future 4 weeks. He was great and no one will even tell me what happened or where to send well wishes. Impenetrable pyrne in a gyre auto phone spiral.

Happy Holiday. You are a jewel. LA Louise, eternal hopeless optimist and watermelon advocator.

Hi Pam, just a short note to let you know that Fordy has tried a lot of
alternative medicine/therapies and sadly none have worked....we also
approached each one with positive energies and thoughts hoping there would
be improvements but alas nothing. Therapies included all types of massage
(deep muscle etc), faith healing, accupuncture (10 weeks full on).......on
the medicine side we've been to at least 3 different alternate practitioners
and had massive doses of oils, vitamins and minerals and all we got out of
it was a huge credit card bill ;-) We really wanted the accupuncture to
work especially on the circulation in the lower limbs and the neck/head flex
but sadly it too failed.
Take care
Fordy's Michelle in Oz

Michelle,
How are things in Wolumba? Is Fordy using his wheelchair or should I give him
the cat's bum? Are you freezing, Anne was complainimg that it was colder than
usual. Now that you got the house fixed it is too cold to use the pergola?
You have to listen to me and give Fordy more hugs :o)
Take care, give him some hugs from Bill and Charlotte

Verl,
What did the ER people say caused it? It could be low potassium,
dehydration, infection or even low BP that caused it. Hopefully they found
out which and helped him.
Take care, Bill and Charlotte
====================================

Anne and Ti mo,

Speech (swallowing) therapy works well with MSA or SDS. Physical therapy can help with movement.

following are some speech therapy hints and exercises from Rose Chable

Take care Bill and Charlotte

Three things to keep in mind for oral exercises; strength, flexibility, and
coordination.

Here are some examples.

For STRENGTH:

Use a tongue depressor, popsicle stick or small spoon for resistance.

1. As you're trying to stick out your tongue, press against your tongue
with the depressor, etc. You can use this same idea in all positions for
your tongue---

2. trying to stick your tongue out beyond the corners of the lips and
pressing back for resistance, etc. You can use this with the lips too.

3. Pucker hard and press back for resistance. Another for the lips,

4. blow lots of air into the cheeks; don't let air escape through the lips.
If trouble loosing liquid from lips,

5. press lips together firmly (no red of the lips showing) and hold for one
minute intervals. Try holding thin objects with lips only (no teeth) for
longer periods of time (ie. use straw, tongue depressor, thermometer).

6. Make the loudest kissing sound you can (the louder, the stronger your
lips are).

7. Say Coke, cake, cook.... each word with strong "c/k" sounds to get
the tongue to go up in back (this is usually good for swallowing too).

For FLEXIBILITY:

The goal here is to get your tongue and lips to move to the FULL extent
possible.

Examples:

1. Stick tongue straight out way beyond the lips; hold for 3-5 seconds.
If you have trouble doing this, wrap a piece of gauze or similar material
around your tongue and GENTLY pull out, stretching slightly and hold.
Like any muscle, don't stretch to a point of pain. (This one's usu. good
for swallowing too).

2. Stick tongue tip into each corner of the mouth. If easy, stretch
beyond the corners, as if getting peanut butter (or whatever) from the
sides of your mouth.

3. Stick tongue up to top lip then down beyond bottom lip as far as
possible.

4. "count your teeth with your tongue"; try to reach every tooth in your
mouth with your teeth.

5. Stick tongue into each cheek and push the cheek out as far as
possible with the tongue. Try to go farther back in your mouth towards back
teeth. (Good for swallowing if the person has difficulty getting the food
out around the teeth)

6. Lick lips all the way around, not missing any part of the lips while
keeping your mouth open slightly. Try to get your tongue beyond the red
border of your lips.

7. For lips, Alternate hard pucker with WIDE smile.

8. Alternate Open mouth WIDE, press lips together firmly.

For COORDINATION

The goal here is keeping consistently strong movements while speeding up the
movement in a repetitive fashion.

1. Move tongue back and forth into each corner of the mouth (make sure
you touch each corner). Speed up as quickly as possible. Keep your tongue
moving consistently, like to the beat of drum that's getting faster.

2. Pretend to lick a popsicle; open mouth sligtly and keep it open. Put
tongue down on chin then "lick" up to top lip. Do as quickly as possible
but make sure the movement is accurate.

3. Lick lips all the way around but speed up as quickly as possible with
mouth open slightly. Don't miss any part of the lips. Change
directions.

4. As some have mentioned, repeat sequences of syllables (mama or
Puhpuh=for lips, Lala or Tuhtuh= tongue tip up, Kaka or Kuhkuh=raising
back of tongue).

Do sets of sequences quickly but accurately; all sounds must be heard.
This is an example of one set to do;
"Puh Tuh Kuh, Puh Tuh Kuh, Puh Tuh Kuh"

To INCREASE SENSATION AND FLEXIBILITY if difficult to do above;

1. Use a toothbrush's flat side and press firmly down in the middle of
your tongue then try the "c" words...cook,etc.

2. Run the toothbrush back to front on your tongue.....then stick out
your tongue as far as possible.

3. Run the toothbrush down the sides of your tongue diagonally. Do one
side then try to get your tongue to the corner of the lips in the
direction you were rubbing.

You can also use a "Nuk brush" or oral sponges sold in pharmacies. Any
of these things can be put in the freezer or add lemon to them to get even
more sensation.

Pick and choose based on what you have difficulty with, then do the
exercises that you've chosen ten times each, two times each day and see
where that leads. Work on exercises that are somewhat challenging but not
frustrating and try to work up to the ones that are the most difficult if
you can.

Here are some things to keep in mind for clearer speech:

When talking, concentrate on the following:
1. Open your mouth wider
2. Separate your words and syllables (Examples: Mi-am-i Flor-i-da or I'll
see you to-mor-row).
3. Pronounce EVERY sound (overexaggerate)
4. Take a deep breath prior to speaking
5. Take a breath after every 4-5 words
6. Be LOUD

Most people who have weakness/decreased coordination of the tongue, do best
using #1 and 2.
If it's mostly a voice problem (too soft), concentrate on #6 and 4.

Have someone else listen to you during a short conversation with them and
have them give you feedback on if you're really using the strategies or need
to do more of them.

Or, you could tape record yourself for your own feedback.

Laura, My husband was also dxed with LBD (among other things) and has
taken Sinemet for about 5 years. Do you know what neuroleptic meds are by
name? Cholinergic therapy Meds? Controlled release large quantities were
ground and fed all at once during 6 week rehab hospital stay and his mental
state was changed completely. NO DOCTOR was available to family during this
stay or after. Insurance NO Bills and Medicare Summaries arrived later.
Visiting was discouraged because patients were there to work. He was so
lonely, and so was I. Bedfast now, and babied, but he knows me.
LA Louise where weeklong high temps (95*) and daily build a free sauna.

At the moment I take no medicins, because the doctors don't want to interfear the results of my bloodtests. For myself, I want to start with a vitamin B12 oral spray, because swallowing cause difficulty. If possible, at home I use the wheelchair as less as possible and I shovel bent over as if I look for money.My legs do want to walk, but my lower back and my neck hurts. The wheelchair I use in the kitchen to prepair the food. Standing for a while is hardly possible. It did took a long time before my husband conviced me of the advantages of the chair.

Thank you for your kind help so far.

Anne

I have just returned from spending the day at the
emergency room. My husband blacked out this morning
and I could not wake him up. I had to call 911 who
came took him to the hospital. This is the second
time this has happened since he was diagnosed with
Shy-Drager. My question for you is are these black
outs real common and would he wake up if I didn't call
911?In both of the recent incidents I was unable to
wake him. This time he was out for 20 minutes. He is
quite disoriented when he finally comes to. Any
information you can give me will be much appreciated.

Happened upon this series of websites today when searching for CoQ10
info.
http://parkinsons.about.com/health/parkinsons/library/weekly/aa031901a.htm
http://www.brainrecovery.com/about_br.htm
http://www.brainrecovery.com/aboutdrp.htm
http://www.brainrecovery.com/drp_bio.htm
Regards,
Pam

On the topic of CoQ10, I am attaching a layman's description of CoQ10
deficiency which I find very interesting in view of the fact that part of my
brother's diagnostic testing prior to his dx with MSA disclosed that he was
borderline deficient in B12 and he now takes B12 shots to maintain normal
B12 levels.
Note that in the 17 step process for biosynthesis of
CoQ10, Vitamin B12 is one of the seven essential vitamins. Probably not
scientific proof of anything, but
it suggests to me that maybe he should be tested for
CoQ10 deficiency.
Any devil's advocates out there who care to respond.
Jerry Cash
<<index.htm

For anyone interested, you will need to click on and open the lay person's
explanation of CoQ10 deficiency on this site once you open the attachment.
Jerry

Anne and Ti mo,

This could be MSA or Shy-Drager. However, from what you describe it could be other things too. Are you taking medicines for the blood pressure? Have they tried you on Sinemet (dopamine) or antispasm medicines?

Take care, Bill and Charlotte in Herndon, VA, USA (just west of Washington, DC)

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

Dear Vera,
So glad nothing was broken with Fred's fall. Warren has scars and bruises
from his falls. One nurse asked him how he got them, guess she thought I
was beating him up. Also glad that he doesn't h