My blog

Aside from the dementia, is Al asymptomatic, or just better than he
was a couple of years ago?
Doug

Hi Vera: Sorry Fred blacked out. You really have your hands full. With
this disease, you never know what is going to happen next. Regards,
jerrie

My dear Vera
I'm so sorry to hear Fred fell, sure hope he didn't break anything. My gosh
what else can happen to you. Ignore the in-laws and know you do the best
for Fred. My thoughts and prayers are with you both.
Mary S

Hello all,

The attachments to this email are 1. The manufacture's drug information sheet for the drug used in chelation,

2. a paper on the misuse of chelation.

If this doesn't scare you, nothing will.

God bless,

Jim Stark

Vera,
I am sorry to hear about fred.. I hope he did not break anything.
Patricia

Jim,

That makes sense.

Happy Fourth of July!!!!!!

Waverly,

Yes it would be a good idea except for those heavy metals which are fat soluble. These are stored in fat and would not show up on a blood test. Some doctors would also do biopsies as well as blood work.

Either way, I would have the tests done by an independent doctor, not the one who is going to give the chelation.

God Bless,

Jim Stark

Waverly,

Yes it would be a good idea except for those heavy metals which are fat soluble. These are stored in fat and would not show up on a blood test. Some doctors would also do biopsies as well as blood work.

Either way, I would have the tests done by an independent doctor, not the one who is going to give the chelation.

God Bless,

Jim Stark

Fred isn't doing to well , he blacked out on me last night around
1am. I got a appointment with his MD at 9:30 a and a call in to his
Neuro already. B/P is down 84/57 s/d and 64/50 s/u. He hit the walk
when it happen and has a really red spot where he hit his back. Want
to check to make sure nothing is broke.
Get bck to you later.
Vera

Conservative Pressure for Stem Cell Funds Builds
Key Antiabortionists Join Push for Embryo Research

^

By Ceci Connolly
Washington Post Staff Writer
Monday, July 2, 2001; Page A01

President Bush, nearing a decision on whether to fund controversial medical research using cells obtained from human embryos, is under increasing pressure from prominent conservative Republicans who argue it is possible to be both "pro-life" and "pro-stem cell."

In an unlikely twist, some of the same leaders who have consistently championed the antiabortion cause in America are now in the vanguard of a new political force.

"Stem cell research facilitates life," said Sen. Orrin G. Hatch (R-Utah), who studied the issue for two years before deciding to aggressively lobby the Bush administration. "Abortion destroys life; this is about saving lives."

Within the next few weeks, Bush is expected to decide whether to allow scientists to use federal money for stem cell research. In a draft report circulated last week, scientists from the National Institutes of Health enthusiastically described the potential of the cells.

These tiny cells are typically obtained from early embryos that are discarded at fertility clinics. Because embryonic cells can develop into brain cells, liver cells and heart muscle cells, scientists say the work could lead to breakthroughs on such diseases as Alzheimer's, Parkinson's and diabetes. One group estimates that 100 million people suffer from conditions that could be aided through stem cell developments.

Catholic leaders and many antiabortion activists are waging a fierce campaign to prevent federally funded research. They argue that any work on embryos -- even those about to be discarded at fertility clinics -- is tantamount to the taking of a life.

"The idea that someone may otherwise be discarding the embryo anyway is not relevant to the moral question for our government," said Richard Doerflinger, an official with the National Conference of Catholic Bishops. "Destroying an embryo in the lab is morally the same as abortion in Catholic teaching."

Contrary to the perception that the stem cell debate is merely the latest chapter in this nation's long argument over abortion, leaders such as Hatch and former senator Connie Mack are proving that the political and ethical calculus is far more complex.

"The most pro-life position would be to help people who suffer from these maladies," Hatch said in an interview. "That is far more ethical than just abandoning or discarding these embryonic stem cells."

For politicians such as Hatch, a Mormon, the decision to break with many of their allies in the antiabortion community was closely tied to the enormous medical potential of embryonic stem cells to treat a wide range of debilitating conditions.

"I am just as pro-life today as I was before I had any knowledge of stem cells," said Mack, a Florida Republican with close ties to Bush.

A Roman Catholic and cancer survivor, Mack holds firm to the view that life begins at conception. But until recently, he said, "we didn't imagine that an egg could be fertilized outside the uterus in a petri dish or test tube." His beliefs have not changed, he explained, but they have evolved to take into account new scientific discoveries.

In a 12-page memo to the administration, Hatch detailed his antiabortion credentials: author of a constitutional amendment allowing states to outlaw abortion, co-sponsor of the "Unborn Victims of Violence" bill and reliable vote against federal support for abortion.

Hatch is hardly alone. In recent days, letters from the moderate House Republican Main Street Coalition, Sen. Zell Miller, a conservative Georgia Democrat, and 38 House Republicans have streamed into the White House. The growing antiabortion, pro-stem cell contingent includes Rep. Randy "Duke" Cunningham (R-Calif.) and Sens. Strom Thurmond (R-S.C.) and Gordon Smith (R-Ore.).

Advocates of embryonic stem cell research have found a warm reception at the Department of Health and Human Services, where secretary Tommy G. Thompson, an antiabortion Catholic, has made clear his sympathies. But Thompson has also stressed that he is not the final arbiter, so several lawmakers have made personal appeals to Vice President Cheney, White House Chief of Staff Andrew H. Card Jr. and senior adviser Karl Rove.

According to two administration sources, Rove has become a major hurdle in the process, fearful that supporting stem cell experiments will alienate the crucial Catholic vote -- just as Bush prepares to visit Pope John Paul II. Moderate Republicans such as Rep. Constance A. Morella counter that the church hierarchy is not the same as rank-and-file Catholics. A survey in her suburban Maryland district, along with national polls conducted by ABC News and the Wall Street Journal, found overwhelming support for the research, even among a majority of Catholics.

At one time, Bush's team had hoped to scuttle Clinton administration plans to support stem cell research quietly. But with the scientific community, politicians and patients' rights groups touting the life-saving potential of stem cells, Bush's decision is drawing more attention, not less.

"We are spending a great deal of time studying not only the science, but the ethical dimensions of this," a Bush strategist said. Although many in the White House are impressed by the scientific data, there is also great anxiety over the potential for "ethical precedents we can't even anticipate," this source said.

Some in the administration are searching for a compromise that could include investing more heavily in research on stem cells obtained from adults, which do not require the destruction of embryos. Another option would be to fund work on embryonic stem cell lines that have already been harvested.

Unlike so many Washington debates, the future of embryonic stem cells is an emotional, often personal, one.

"This is an issue that touches people's lives very directly and very personally," Sen. Susan Collins (R-Maine) said she told Rove in a White House meeting. "It would be a mistake for the president to put himself in a position where his decision might be interpreted as insensitive to the suffering of families who have endured these devastating diseases."

Members of the Juvenile Diabetes Foundation have patrolled the halls of Congress and met recently with Cheney to plead for funding. Twice in recent weeks, they have also flooded the White House telephone lines in a bid for Bush's assistance. And Hatch said yesterday that stem cell supporters are nearing the 60 votes in the Senate that would prevent a filibuster.

For some, such as Mack and Miller, a direct experience with a debilitating disease has influenced their thinking.

"I, too, have struggled with this issue," said Miller, who described in a letter to Bush the pain in watching "family members struggle with diabetes and other conditions that could greatly benefit from stem cell research."

Mack began delving into science 13 years ago as cancer struck several family members. From a public policy perspective, the issue of fetal tissue research presented "the first time two fundamental principles were in conflict," he recalled. Two factors have been critical to his analysis: the life-saving potential of medical research and the knowledge that in most instances, these embryos would be destroyed regardless.

During the campaign and in a recent letter to the antiabortion Culture of Life Foundation, Bush spoke against "federal funding for stem cell research that involves destroying living human embryos." But because scientists would not necessarily be engaged in the destruction of embryos, just the use of them, some stem cell advocates believe Bush has maneuvering room.

GOP pollster Linda DiVall said Bush risks aggravating abortion opponents, but he "would be given credit for wrestling with the moral implications of this and understanding that while many people are conflicted, they want to see lives saved in the future."

Though the road has been difficult, people such as Mack and Hatch say once they reached a conclusion in support of stem cell research, it seemed there was no other choice. As Hatch put it: "Why shouldn't we use these cells for the benefit of mankind?"

© 2001 The Washington Post Company

Nicotine makes new blood vessels grow: study

By Amy Norton

NEW YORK, Jun 29 (Reuters Health) - In findings that suggest a new theory on how smoking causes disease--and raise concerns about long-term use of nicotine replacement therapy--California scientists have discovered that nicotine can trigger the growth of new blood vessels. This process, called angiogenesis, has been implicated in the spread of cancer and the build-up of plaque in heart arteries.

In experiments with human cells and mice, researchers at Stanford University found that nicotine prompted new blood vessel formation--a process believed to help tumors and artery-clogging plaques thrive and grow. They report the findings in the July issue of the journal Nature Medicine.

"This is the first evidence that nicotine promotes angiogenesis, and more work is needed to understand how it is related to tobacco-related diseases," lead researcher Dr. John P. Cooke said in an interview with Reuters Health.

What it does suggest, he said, is that nicotine-replacement therapy should remain only a short-term therapy to get smokers off of cigarettes--and not a long-term fix for nicotine craving.

Considering smoking's untoward effects on arteries, the fact that nicotine would actually promote blood vessel formation seems counterintuitive at first, according to Cooke.

"We started with the opposite hypothesis," he said, explaining that his team expected nicotine would injure blood vessels, rather than cause new ones to sprout.

Instead, nicotine showed angiogenic effects in experiments with cell cultures and in mice made to develop artery-clogging plaques and models of cancer. Scientists believe that in cancer, new blood vessels emerge to help tumors grow and spread. And, Cooke said, there is now "good evidence" that the fatty deposits that clog arteries and lead to heart attack and stroke need the support of tiny, new vessels to thrive.

Although it is unclear what nicotine does when it is delivered via a cigarette, Cooke said it is possible that inhaled nicotine helps spur cancer and heart disease through angiogenesis.

While that idea is still "speculation," he added, a more immediate concern is that people on nicotine replacement therapy not stay on it longer than recommended--since nicotine on its own may have health consequences.

"This shouldn't be taken to say that nicotine replacement therapy should be stopped," Cooke stressed. "But it should be used only in the short-term."

A researcher at Harvard Medical School in Boston, Massachusetts, said that these findings are indeed probably most significant in the area of nicotine replacement therapy.

"We're not trying to alarm people using nicotine replacement therapy," Dr. Rakesh K. Jain told Reuters Health. For one, he noted, a study of patients with heart disease showed that using the nicotine patch did not raise their risk for heart attack.

Instead, Jain said, these "very preliminary" findings highlight the need for tracking any long-range effects nicotine replacement therapy might have.

But Jain, who wrote an editorial accompanying the report, expressed doubt that smokers are promoting new blood vessel growth through their habit. He pointed out that tobacco smoke contains thousands of chemicals, some of which are clearly injurious to blood vessels. The vessel-promoting effects of nicotine, he said, "are probably wiped out by tobacco as a whole."

Another key area these findings may affect is the treatment of chronic disease, Cooke said. Angiogenesis is desirable, for example, in heart disease. Scientists have been looking at whether drugs can spur the growth of healthy new blood vessels to take over the job of diseased ones. Nicotine agents should be studied in this area, according to Cooke.

But since nicotine may spur unwanted blood vessel growth, he added, this study also cautions against giving therapeutic nicotine in a way that would affect the whole body. Instead, Cooke said, he believes such treatment should be "locally delivered."

Nicotine is already being studied as a therapy for diseases such as Alzheimer's and Parkinson's because brain cells have nicotine receptors and research has suggested the drug might help these conditions.

SOURCE: Nature Medicine 2001;7:833-839,775-777.

Copyright © 2001 Reuters Limited. All rights reserved. Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.

http://www.ama-assn.org/sci-pubs/amnews/amn_01/edsa0709.htm

From amednews.com:

OPINION

Home caregivers: Ask about hidden risks

A new patient questionnaire helps uncover the burnout, depression and personal neglect suffered by those who provide care for elderly or chronically ill patients at home.

Editorial. July 9/16, 2001. Additional information

Jim,

I know that some people have their hair tested for heavy metals - might this not be a good idea for anyone considering chelation therapy?

Waverley
Vera,
At onetime I sold the medicines used in chelation. I had to keep a supply in
my home so I could deliver it at a moments notice. I am talking about
bringing it to emergency rooms because the only approved use for chelation
to
treat a patient who had been poisoned with one or more heavy metals, e.g..
Lead or any other heavy metals.
At that time the medication was not approved for any other indication but
to remove heavy metals. It is still true today. The problem is that a doctor
can use any medication for any disease he wishes. He has to accept full
responsibility for the treatment.
I called on a few doctors who were claming the stuff cured anything, and
from what I knew and what I saw, These doctors were just fooling the
patients and making a GREAT deal of money. They even said they could cure a
patient from a crippling ailment and have them get out of their wheel chairs
and walk out. Never happened and will never happen. It is a complete scam!
God Bless,
Jim Stark
If you do not wish to belong to shydrager, you may
unsubscribe by sending a blank email to

Marge, I have only recently piocked up on the current messages. If you are
planning a trip to TN. We live in middle TN. You mention a friend at
Vanderbilt. We work with those physcians. I woudl love to meet you.
Marilyn in TN

Marge,

I still don't understand this. All of these posts imply that Al's symptoms are totally reversed, yet you say that two movement disorder specialists have confirmed MSA even though Al has no major symptoms, could you tell us what tests they ran to determine MSA? You must admit is a little strange, since it took many people here years to get a diagnoses that all these doctors can diagnose Al when he has no symptoms.

Is Dr. Ashe at the VA hospital? You mention he is a researcher, can you list any of his publications for us? I could not find anything on that name and MSA or Shy-Drager.

You must also remember that Johnny Cash was diagnosed as having MSA/SDS and years later it was changed to something else. You must also recognize that many people have gone and gotten days of testing to determine that they had MSA and still the only absolute diagnoses is autopsy.

Take care, Bill and Charlotte

Pam, on June 26th Dr. Ashe,Movement Disorder Specialist,Researcher, Neurology MSA Specialist confirmed that Al has MSA. Also his Neurologist, MSA Specialist,confirmed about 2 years ago that he has MSA. This should end this subject. Pam, yes of course long before I post anything these Doctors and other individuals receive info from me. My Doctor friend at Vanderbilt also gets my eamils. Dr. Nance has asked that Al and I come for a visit. Time permitting I shall do that . Marge
Message: 2
Date: Sat, 30 Jun 2001 09:36:43 -0300
From: "Pam Bower" <pbower@...
Subject: Re: Case History published in Townsend Letters for doctors and Patients- June- 2001
This is a direct quote from an earlier post by Marge:
"To find an Acupuncturist I would suggest that you find a Four Year
Acupuncture College, most major cities have one, and ask them for a Graduate
Referral."
She is not advocating that people spend thousands of dollars to travel to
Minnesota to see Colet Lahoz.
Also in her note she states Al was diagnosed with MSA twice. Once by Dr.
Martha Nance and a second time by Dr. Khalaf Bushara. Of course they could
both be wrong about the diagnosis. Just being a devil's advocate here.. :)
Isn't it a bit odd that we all really wanted to believe Johnny Cash had MSA
and doubted him when he said he didn't(we really knew nothing about his
actual symptoms other than he was hospitalized with pneumonia several times)
and now we are doubting that Al had MSA at all when again we have no real
details of his condition and what led the doctors to diagnose him as such.
For those who don't know, Dr. Martha Nance is the medical Medical/Research
Liason for National Ataxia Foundation in Minnesota.
http://www.parknicolletclinic.com/Doctors/find_a_provider/provider_detail/pr
ovider_detail.cfm?ID=622
"Martha Anne Nance, M.D., is the director of the Huntington's Disease Clinic
at the Hennepin County Medical Center in Minneapolis, Minn. She is also the
Medical director of the Struthers Parkinson's Center in Golden Valley, Minn.
Dr. Nance is a neurologist at the Park Nicollet Clinic and teaches neurology
at the University of Minnesota. She is a member of the American Academy of
Neurology, the American Society of Human Genetics, the Movement Disorders
Society, and is a medical-research liaison for the National Ataxia
Foundation. She is also a field editor for the American Journal of Medical
Genetics, director of the U.S. Huntington Disease Genetic Testing Group, and
Co-Director of the Ataxia Molecular Diagnostic Testing Group. After
graduating Cum Laude from Yale University, Dr. Nance earned her medical
degree in Molecular Biophysics and Biochemistry from the Medical College of
Virginia."
I have a question for Marge(I'll also send this to her directly in case she
misses this post on the list):: Have you followed up with Dr. Nance and
told her of Al's experience with acupuncture? Dr. Nance wrote a book called
"Living with Ataxia" which discusses coping with symptoms so I would think
she would be interesting in hearing about anything that seemed to help
symptoms as you describe.
According to this page Dr. Khalaf Bushara is now an assistant professor in
neurology at the University of Minnesota.
http://www1.umn.edu/commpub/tcmed/programs/neur.html
According to this page he was formerly with the NIH in the National
Institute of Neurological Disorders and Stroke.
http://www.ataxia.org/Jan-2000-MTG.html
Again I wonder if Marge has shared the article by Colet Lahoz with Dr.
Bushara. If she hasn't I will suggest that it be forwarded to both him and
Dr. Nance to solicit their comments. I am very interested in getting some
opinions from the doctors who have seen Al personally, we all need more
information on this.
Regards,
Pam

Hi Marge,
Is this your Dr. Ashe? Or maybe her husband? Interesting websites.
http://news.mpr.org/programs/specials/u/topten/7_alz.shtml
http://www.mnmed.org/publications/MnMed2001/May/Emerson.html
Regards,
Pam

If your GP said it was nothing to worry about, it is probably just that.
However, if it worries you, try to see a cardiologist.
Take care, Bill and Charlotte
=====================================

Community fairs, picnics, concerts and fireworks... no different from the
4th of July.
http://kidexchange.miningco.com/kids/kidexchange/library/weekly/aa062798.htm
Hugs,
Pam

Barb:
I feel the same way you do about his family. I know it's hard for
them to understand what is going on with Fred and this illness. I do
have Two of his sister's trying to get them to just leave me alone
and let me do the job that I'm doing. They are the two that have
looked up the reseach on the MSA and other pages off the web.Both
Fred and I feel the doctor is doing all that will help at this time.
Fred's mother is talking about coming down this next week, I'm sure
something will be said about the treatment that Linda wants done, but
I have all the pages that have been on here about the Chelation
therapy and I let Fred read it and it's nothing that we are willing
to take a chance with and his going to tell them so.
Thanks for being there Barb.
Take Care
Vera

Woody,
You may be suffering transient ischemia attacks. These involve loss of blood
to part of the brain because of small emboli, but more commonly, it is
caused by a arterial spasm in the brain. You need to have this checked out!
You also said you are a swimmer, You could have an inner ear infection.
Symptoms that go with MSA are usually bilateral. If the numbness is all the
way to your feet, It almost has to be Vascular.
Maybe someone will chime in with a better idea. Please have this checked
out, it could be serious!
God Bless,
Jim Stark

hi, I forgt to ask for help on another problem, I have just had a
heart 24hrs moniter test done and it showed that I had papitations
during that day, something I thought I had been having for abuot four
years but all preveise test had showed nothig My gp tells me there is
nothing to worry about even though I can get them a few times a
weekand then nothing for a week or three and back they come. It can
be day or night sitting lying down or walking, which I find tiring.
So my q's is should I be worred, and if so what should I do!

Vera:
It is so hard to have everyone second guessing you at such a hard
time. Of course, Fred's family members are just grabbing at straws because
they really can't stop this awful illness any more than the rest of us can.
One thing I always told therapy clients to say when family members were
trying to tell them what to do was "You may have a point" and then to just go
about their business and ignore the advice. I don't know if such a response
will work for you. Unsolicited advice always feels much better to the giver
than to the receiver, and perhaps by offering the advice, Fred's family feels
better about what is happening. Obviously arguing with them does not work, or
they would have stopped trying to advise by now, so the only thing left is to
thank them and go on your way. Do not hesitate to call me if you just need to
talk. I know you are going through a really tough time, and would really
benefit if Fred's family could be behind you more. And they would benefit if
they could be closer to you without trying to give unwanted advice. Anyway,
call me, and I will not suggest crazy treatments.
Love, Barbara Smith

LA Louise, ignert , trying to get link you sent on newly installed 'e' icon which brings up an address blank which ONLY shows me Springhill ads and clicks off to screen saver, repeat, repeat. Please, can someone fix me a hands up on forum messages so I can get http://www.medicare.gov/ like turning on a light switch? Church time for some, St. Paul's Sunday Morning on PBS for others...Thanks, and wha hoppen on Canada Day?? Her it is Freedom Celebration where you

Jump so High you up inna sky and don't come down 'tilla Forfha July, Freedom, Freedom, Freedom, then hot peppers with a two turners double jumprope.

HAPPY CANADA DAY !!!!!

[INLINE]

Here is a copy for those who cannot get it. Keep scrolling down it is
very long beyond the introduction.
COVER SHEET FOR HOW DID WE GET HERE ANYWAY SURVEY
The idea for the HOW DID WE GET HERE ANYWAY SURVEY formed as the result
of a post (seen below) to PIEN on May 9, 2001.
Dear List Family,
Have you ever taken the time to think about how we got on this PD/PD+
road
we travel? Have you ever wondered what illness, what accident, what
environmental cause brought us here?
This is a List Family thing, and I need your help. I would like to see
how
many of us may have had the same things happen to us that might have led
us
on this path. I'm interested in numbers not names, etc. I even have my
Ed team interested in looking at the information which will go to the
List
Family first.
For example: Have you ever had mono or an illness, even a childhood
disease with a very high fever? Have you ever been diagnosed with the
Epstein Bra Virus or had a diagnosis of Chronic Fatigue Syndrome? At
some
point in your life, been in an accident or a fall, etc., did you suffer
some
kind of head or spinal injury? Did something happen to your vision
before
you were diagnosed? Did you have poor balance as a child? What about
Restless Leg Syndrome? Consider, too, herbicides and pesticides. Did
you
work with or around them? Did you suffer from any health problems
because of them?
Did you suffer from memory problems and/or depression?`
What we're looking for is the possibility of common ground. Something
or
some things caused the dopamine to disappear. Everyone else is
researching. Why don't we?
E of the headdress
Everyone who responded to the post with information had his/her
contributions included
in the survey wherever possible. Mario and Michiel not only contributed
to the survey, they volunteered to assist in its development. Michiel
and I will work on the survey; Mario will do the spread sheet(s) and
Maryse offered to translate the survey into French for some of our
international members. What you see is a concerted effort. We are a
team, and we are looking for commonalities!
Any success we achieve is success for everyone. Anything we discover is
discovery for all of us.
We urge you to participate. In addition, share copies of the survey
with other PDers and support groups in your areas. Lets be counted!
Developed by,
Edith Love
Mario A. Gonzalez
Marco De Michiel
French Translation,
Maryse Schild
THE HOW DID WE GET HERE ANYWAY SURVEY
SECTION A. BASIC INFORMATION
This is the grin and bear it part. We are trying to find out what got
us here. Without basics, we cannot do that.
TO ANSWER SECTION A: WRITE IT. CHECKMARK IT.
Gender: Male Female Age: ________
Date of Birth:

If anyone wants to participate in this survey please see the attached word
document or
write to Edith Love elove@... for more information. She's looking for
input
from people with Parkinsons Plus (PD+). MSA/Shydrager is considered a
Parkinson Plus
disorder.
Regards,
Pam

Bill:
You could be right, The reason I asked about this, is so that i could
get his family off my back about all of these different things they
want me to do. Just wanted to be armed with some kind of support and
item's to tell them why it isn't good for Fred, and once again the
forum has been a great help for me.
Take Care
Vera

Jim:
Well your another one I could just kiss your feet. Your posting is
another one that I will send to Fred's sister Linda. The treatment
that she wanted him to take was down in Mexico.It's so hard when they
are in denial like this and looking for a fast cure, one that isn't
out there yet. I really wouldn't be suprise that they want me to try
Voodoo dolls and pins next. His other sister Donna said the family
could drive me nuts if I let them and I think she's right.
Thanks Alot Jim .
Take Care
Vera

Thanks for the forthright and distinct words.

Barb [INLINE] Still buzzing around.

--
"My friends are my estate." Emily Dickinson

Bill,
I read a paper which stated that the iron buildup was independent of the
level of iron in the blood.
I am sure you are aware that the heme molecules require iron to form
hemoglobin.
God Bless,
Jim Stark

Vera,
At onetime I sold the medicines used in chelation. I had to keep a supply in
my home so I could deliver it at a moments notice. I am talking about
bringing it to emergency rooms because the only approved use for chelation
to
treat a patient who had been poisoned with one or more heavy metals, e.g..
Lead or any other heavy metals.
At that time the medication was not approved for any other indication but
to remove heavy metals. It is still true today. The problem is that a doctor
can use any medication for any disease he wishes. He has to accept full
responsibility for the treatment.
I called on a few doctors who were claming the stuff cured anything, and
from what I knew and what I saw, These doctors were just fooling the
patients and making a GREAT deal of money. They even said they could cure a
patient from a crippling ailment and have them get out of their wheel chairs
and walk out. Never happened and will never happen. It is a complete scam!
God Bless,
Jim Stark

More help, I hope. Barb
http://www.medicare.gov/
--
"My friends are my estate." Emily Dickinson

http://www.ssa.gov/
--
"My friends are my estate." Emily Dickinson

Just surfing for stuff today. May help you folks who do not have the
time like I do.
Barb
http://www.caregiver.com/articles/homecaretips.htm
--
"My friends are my estate." Emily Dickinson

Ran across this today. Barb
http://parkinson.org/scrprogram.htm
--
"My friends are my estate." Emily Dickinson

Chuck:
Thank you for coming up with something on this. I am on the top of
the list for not so favorite daughter in law or in law with Fred's
family now. Well all but two of his sister's.The other's feel I am
not trying to help him in anyway. The one think the Chelation Therepy
is the answer to getting rid of the MSA, and I tolded her that it
isn't the answer. So when this came in the digest I sent the digest
to her, so she could read your answer. I could kiss your feet, now
maybe they will stop given me a hard time. I told her if she wants to
help send a donation to Vanderbilt so that they can reseach more on
this illness.Thanks so much Chuck, you may of made my life a little
easyer.
God Bless
Vera

Vera,
Actually, some researchers think that PD and PD+ disorders are caused by the
brain not handling iron correctly. If so, giving more iron might do harm.
However, there is no evidence that digested iron is causing the problem. We
need about 18 mg of iron a day, more than that is questionable.
Take care, Bill and Charlotte
===============================

Happy Fourth of July all.

Barb. [INLINE]

http://www.marvelicious.com/independence.html
--
"My friends are my estate." Emily Dickinson

Who-what if any makes impractical new rules for Medicare services eligibility? I've stopped trying to understand documented monthly recovery or hospice option. Best wishes to you and Charlotte with the botox injections and thanks for the explanation of the process and follow-up. Only caregivers can understand how difficult and exhausting wheelchair travel is for all concerned. Keep pushing and mentoring, we need you.

New HH agency owners here considered computers to replace written checklists. Wonder if that is Medicare or local.

Sounds great, won't work .

We ain't down yet!! Got lots of giant shoulders to stand on and hopes to leave the world a better place. Enjoy your

Holiday. Prairie home companion gonna have Julliard grads (Minnie Pearl graduated) and Mary Carpenter today.

Garrison's authority spoofs always bring me down to earth and allow laughter for human conditions. You all, too? SleepyLA Louise where the remote backdoor is no longer locked and who put Feta cheese in the fridge last night?

To all:
re: my two young crows!
If you haven't been keeping up with the correspondences about Charlie and
Orley, I'll include all the messages here.
Tonight, I decided they are old enough to stay out all night. As you know,
Wednesday night Charlie tested my nerves, by not saying a word or a squawk
to me as called and called to him. So with great anguish I gave up searching
and hoped for the best. He was all right, in the morning he came to me
squawking. Pete(my husband) a bit apprehensive about Charlie and Orley
staying out all night put Oley(our outdoor cat) in the garage. I'm also
including some photos I took today. I love the one where Charlie and Orley
are on Otto(one of our dogs). We also have Lady(golden retriever),
Bo(pomeranian),Tammy and Tabby(indoor cats). Now are you keeping all the
pets straight? Remember Pete is the husband!
Mary Ann-
and the Strange"

Barb, Happy Holidays. Even funnin, I'm serious. Maybe post will archive.

Grace, Didn't mean to overwhelm you. Trying to stay awake, watching Jan, idle hands tend to graze cupboards, computer illiterate and deeply grateful for your concern.

Jim, Your explications are a HUGE help. Someday this town will have a reference librarian with some books and a telephone...we already have a rodeo arena, two grocery stores and an outdoor swimming pool but I can't go.

LA Louise pounding pills with a stone mortar and pestle from a college that respectfully uses a REAL skeleton in the biology department.

Pam,

The question at the end affects us!!!! QUESTION: What do people think about the various compromises mentioned above? (Lousy choice) Would they be feasible? Doerflinger won't accept it

Would they impede the research?

YES!!!!! They do not know the specific cell for MSA yet - they mention two - one is PD, the other may be ALS - do you know?

Bill

OH, my.......oh, my........oh, my.........
Going off for a while.......houseful of fam and grands arriving
today..........don't write anything funny til I get back!!!
Barb in VA

Vera,
We met in college, Warren fresh from the war and I fresh from a little
community of about 300. All my schooling never had more than 26 pupils in
the class and only one class for a grade, Wow. We were both taking Music
appreciation and it went on from there. Warren went on ( after a summer
wedding) to UC Berkely and graduated with honors and a son. I quit school
and supported us with help of GI bill and what fun we had. We were so poor,
but never felt that way and enjoyed every minute of it.
We have 4 sons, 3 grandsons, 1 granddaughter and 1 great grand daughter.
The kids are scattered with only 1 close by. Others are in Portland and
Dallas. We've had a great life and until this thing hit did a lot of
travelling after we retired. Thank God we did as we can look back on those
great times.
Thanks for asking, probably more than you expected.
Mary S.

Jerry,

I also believe their will be exponential increases in the progress being made, just ask anyone on the inside. Look at how many breakthroughs there have been in the last 10 years!!! Keep the faith.

I am also concerned about the humane treatment of animals. There is a committee for the ethical treatment of animals in research that gives lectures at many universities- i can explore this if you'd like Louise. I am an absolute animal luver. I do eat fish and chicken, shamefuly so, on occasion because I just get iller I do not. Kudos to those who can be complete vegetarians : )

Cheers from 100 degree philadelphia

-Wave
Greeting to you too John,
Call me a Polly Anna, I have to hope and believe that there's going to be an
exponential increase in the progress being made in these areas as the real
research break-throughs continue to happen and I believe that you and Larry
will benefit -- if not in a cure then maybe in new or better therapies to
slow the progress of the MSA.
When we asked Larry's neurologist at the time of his diagnosis about cures
or therapies, she basically suggested that we should just accept the
diagnosis because she said the disease was so rare there was little or no
research taking place. In the time since that discussion we've learned of
numerous promising research projects.
So, I refuse to believe that there won't be some significant advances in the
very near future.
Best regards to you John,
Jerry

Speaking of passing things on, are there any women out htere who have been diagnosed with MSA and gone on to have children? ? ? My doctor hopes that preganancy might give me some relief 9besides the joy), whenever that day might come. My Mom finds the idea of me having to go through the pregnancy, labor, and even trying to raise a child a complete nightmare. I would love to hear of anybody's experience with this. - Waverley
Greetings Jerry!
Yes, it is years away. My bet is that 10 years is very conservative. I've
pretty much given up hope on a cure for myself. Instead, I follow this with
interest in the hope such a cure will eventually come - to allow future
Fishers the chance to live without this type of curse. [No, don't misread
this. What I have not inherited. That's pretty clear.]
Regards,
=jbf=
John B. Fisher
If you do not wish to belong to shydrager, you may
unsubscribe by sending a blank email to

Vera;
Chelarion therapy was a great help with my heart problems. But I developed
PD MSA during Chelation. I have had over 110 total treatments with no effect
on the MSA.
Chuck Sarley

Jim, I wrote Grace Halmi at 7.10 pm 6-28 with OVERFULL details in hopes nurse and I could figure things out. Neuro prescribed Glycopyrrolate ? more than a year ago on advice of Speech, dysarthria, dysphagia Clinic at VA. Jan is also years past his expiration date in bowel, apnea, and brain atrophy. I'm inclined to believe there simply isn't room or movement enough in his skimpy frame to push and pull him along with passive, chemical or mechanical manipulations. Alert means he can consistently repeat a name or three with years of Aricept assistance. He has difficulty processing 8 ounces of water at a time (3 hour intervals with 10 minute absorption period ) and runs temps prior to enemas days which drop after more passive, chemical AND mechanical assistance over many years.

He DOES have quality of life acceptable to him. My problem is to keep on keepin on to supply his wants and needs until he wears himself or me down and out. His training and a lifetime of stoicism won't allow him to quit. The tubes and machines were my call with VA specialists advice and have kept us together another 3 years. He always insisted that death terminated everything. Not for me "when you are dead, you are dead." Friends laughingly observed that no one told Jan no because he was too big--everyone looked up to him at 6'4"-- and no one told me no because it wouldn't do any good anyway. Interesting, a bit unconventional, satisfying life. To be or not may soon sort itself out if 23 hour nutrition feedings do not digest or cannot be retained. Transport to surgery to replace feeding tube is next and final exploration. Just to move him seems risky to me. I DO wish a doctor would be able to make house calls and suggest or criticise what the agency and I
are doing. Money doesn't buy everything.

Another storm blown over without power outage! Jan cleanup time again. He sleeps comfortably and then we wake him. HH agency has grown from 37 to 58 clients without new hires and I take what I can get. Has something to do with small hospital federal grants and Medicare dischargees entitlements. OR, could be new not for profit monopoly corp unable to acquire not for sale HHA territory is using excess as a way to wisdom. The managing nurse stressed to a heart attack after the owner fired a do nothing doctor on the new corp board of directors. Small town scuttlebutt aces TV here. Louise on lengthy lunch hour readying the daily bath.

John,
Yes, interesting and promising but still years away apparently. we can only
hope for the possibility that these promising new sciences will develop more
rapidly than current estimates -- most of which seem to be in the ten years
from now range.
However unrealistic it may be, I am waiting, watching and hoping for some
advancements that will cure or delay the progression of MSA in time to help
my brother. None-the-less, any news is certainly good news.
Jerry Cash

Thought this would be interesting ...
Regards,
=jbf=
John B. Fisher
THE FINANCIAL TIMES
FEBRUARY 22 2001
PPL follows Dolly with cell breakthrough
By Francesco Guerrera
PPL Therapeutics, the UK company that cloned Dolly the sheep, has succeeded
in "reprogramming" a cell -a move that could lead to the development of
treatments for diseases such as diabetes, Alzheimer's and Parkinson's.
The Scotland-based group will announce on Friday that it has turned a cow's
skin cell into a beating heart cell and is close to starting research on
humans.
The company reprogrammed the skin cell through a process that made it into a
stem cell - a simple cell that can turn into a wide range of more complex
tissue types - and then into a heart cell.
Stem cells are regarded as one of the most interesting research areas
because their ability to turn into different cells could lead to cures for
degenerative brain diseases such as Parkinson's and Alzheimer's.
However, they have been at the centre of a passionate ethical debate as they
are usually made by using human embryos.
In January, Britain became the first country in the world to allow the use
of human embryos in stem cells research.
The PPL announcement - to be made at the British Fertility Society's Ethics
Study day - will be seen as an important step towards producing stem cells
without using human embryos.
A number of research groups are studying this area and some have reported
some limited success in reprogramming cells.
PPL chose to turn a skin cell into a heart cell because it is relatively
easy.
However, its final goal is to produce islet cells, which are found in the
human pancreas and appear to have the ability to treat diabetes - a market
worth some £85bn a year.
Ron James, PPL's managing director, said he was confident the cell
reprogramming process used in cows could be successful in humans.
The company is to start pre-clinical research with human skin cells very
soon in its laboratory near Edinburgh.
Mr James said clinical trials were about four years away, adding that the
launch of the islet cells on the market was at least six years away.
PPL plans to reveal details of its reprogramming process once its patent is
published towards the end of the year.

research suggests how Parkinson's might arise

By Amy Norton

NEW YORK, Jun 28 (Reuters Health) - Research into the genetic roots of inherited forms of Parkinson's disease may have opened the door to understanding how all forms of the degenerative disorder arise. An international team of scientists has found that two proteins linked to inherited Parkinson's interact in healthy brains--suggesting that a misstep in this interaction may be involved in all cases of Parkinson's.

If future research bears out this concept, it may be possible to design a drug that specifically targets the protein-gone-wrong, study co-author Dr. Michael G. Schlossmacher of Harvard Medical School in Boston, Massachusetts, said in an interview.

He and his colleagues report their findings in the June 28th issue of Sciencexpress, the online edition of the journal Science.

Not long ago, researchers believed Parkinson's disease had no genetic component. But in recent years, scientists have identified gene mutations linked to inherited Parkinson's--rare forms of the disease that typically strike relatively young people. Parkinson's usually affects people older than 50, causing tremors, muscle rigidity, and balance and coordination problems that worsen over time.

All cases of Parkinson's are marked by a loss of certain brain cells that help control movement. All patients also have an accumulation of a protein called alpha-synuclein in their brains, according to Schlossmacher. In fact, scientists recently discovered that a mutation in the gene for alpha-synuclein is responsible for one of the inherited forms of the disease.

Mutations in another gene, called parkin, have been implicated in causing a second inherited type of Parkinson's.

To see what role the parkin and alpha-synuclein proteins might play in common forms of Parkinson's, Schlossmacher and his colleagues examined both healthy brain tissue and tissue from patients with Parkinson's due to a parkin mutation. They found that parkin and alpha-synuclein interact in healthy brains, with parkin helping to clear alpha-synuclein from cells. In brains affected by the inherited form of Parkinson's, however, parkin could not do its job, causing alpha-synuclein to accumulate.

Because parkin and alpha-synuclein have a healthy working relationship in normal brains, Schlossmacher and his colleagues hypothesize that an abnormality in this interaction may be at the root of Parkinson's. Even though most patients do not have an overt mutation in these genes, Schlossmacher explained, they may have a "subtle abnormal tuning" in the interaction between the two proteins that allows alpha-synuclein to accumulate in the brain.

If alpha-synuclein build-up is the trigger for the loss of nerve cells in Parkinson's, it may be possible to design drugs that bring down levels of alpha-synuclein, Schlossmacher said. However, he stressed, this scenario remains about 10 years away.

This study, he said, is a "first and significant step" in understanding how Parkinson's disease begins.

SOURCE: Sciencexpress 2001;10.1126.

In recent months the FDA and the ARC have implemented additional criteria
regarding blood donations which have significantly reduced the supplies.

(Similar but most assredly not identical changes have been adopted in many
other countries as well)

Further restrictions regarding blood from Europeans and from Americans who
spent time over there but are back in the US are going to make this even
worse. The estimates range from a 7% reduction to numbers that are much,
much, worse. (And areas like NYC which get a significant amount of
imported "euroblood" and which have a larger number of native donors who
travel abroad will be even harder hit).

With the disclosure that I'm an acquaintance of his, and a reminder that
some people are upset about some of his other connections, I'd like to
draw your attention to an op-ed column by Steven Milloy in today's NY Post
which raises questions about the reasons for these new regs.

BLEEDING N.Y.C. - FOR PROFIT By STEVEN MILLOY

NY Post June 29, 2001 -- WHY is the American Red Cross trying to reduce
New York City's blood supply by 25 percent? Why does state Health
Commissioner Dr. Antonia Novello support such a move?

The answers are most unappealing. For the Red Cross, the answer appears to
lie with its financial difficulties. For Novello, the answer is an
inability to distinguish real from theoretical risks - topped off by
bureaucratic peer pressure

[ rest snipped, you can find the clip at:

http://www.nypostonline.com/postopinion/opedcolumnists/28144.htm

and I suspect a copy will be up soon at Mr. Milloy's site :

http://www.junkscience.com ]

More from the PD list:
Regards,
Pam
-------
Subject:
News article: Bush considering compromises on stem cells
Date:
Thu, 28 Jun 2001 05:21:40 -0400
From:
Linda J Herman <ljherman1@...
First, just a little editorializing:
As our PD clocks continue to tick away, the president's reply about when
the decision on stem cell research will be made:
''I'll make a decision on that very emotional issue later on,''
President
Bush said when asked about the matter during a Cabinet Room session
Wednesday with GOP lawmakers. (see below)
Linda
AP Online
June 27, 2001; Wednesday
SECTION: Washington - general news
HEADLINE: White House Mulls Stem Cell Issues
BYLINE: LAURA MECKLER
The Bush administration is searching for a compromise that would
allow
federal funds for promising but controversial research that uses stem
cells
derived from embryos.
The issue is pitting scientists and other research advocates against
anti-abortion forces, who are making the fight against this research
their top
issue.
''I'll make a decision on that very emotional issue later on,''
President
Bush said when asked about the matter during a Cabinet Room session
Wednesday with GOP lawmakers.
His advisers are developing several options that would allow the
research to
go ahead but with caveats, according to an administration official who
outlined
the potential compromises on condition of anonymity.
Options being discussed include:
_Limiting the number of embryonic stem cell lines that would qualify
for
federal money. Each stem cell line comes from an individual embryo that
can be
duplicated an infinite number of times. Researchers have already used
private
money to create two stem cell lines, and the administration could limit
funds to
stem cells already in existence.
_Put the National Institutes of Health in charge of licensing stem
cell lines
that would qualify for research funds, as a way of controlling the
number
in
use. This is similar to the requirement already spelled out by the
Clinton
administration.
_Add new protections for parents who created the embryos in the first
place.
The embryos used for this research are left over from fertility
treatments and
typically are thrown away after the parents have all the children they
want.
Parents already must give permission for their embryos to be used in
PAGE 2
AP Online June 27, 2001; Wednesday
research. But this process could be tightened by making clear all the
options,
including offering the embryos to other couples for adoption, the
official said.
One leading research opponent, Richard Doerflinger of the National
Conference
of Catholic Bishops, dismissed these compromise ideas. He said parents
already
are required to consent and that limiting the research to a few stem
cell
lines
does not make it any more ethical.
He also said allowing the research at all was a compromise.
''If we weren't compromising we would be trying for a ban on private
funding
as well,'' he said.
Federal law bans the use of tax dollars on any research that destroys
embryos. The Clinton administration got around that by ruling that it
was
OK to
use the stem cells in federally funded research, as long as private
dollars paid
for them to be extracted from the embryos.
Two applications that have been submitted to the NIH are in limbo
while Bush
decides whether to allow the Clinton policy to stand or how to revise
it.
Within the administration, Health and Human Services Secretary Tommy
Thompson
is pushing the president to let the research go forward. Some of the
most
important stem cell research is going on in Wisconsin, where Thompson
was
governor for 14 years, and he was on record supporting the research
before he
ever arrived in Washington.
Thompson has discussed the issue with Bush personally at least three
times,
twice in person, and he has promised a decision by next month.
In addition, several high-profile, anti-abortion Republicans have
expressed
support for the research, including Sens. Trent Lott of Mississippi,
John
McCain
of Arizona and Orrin Hatch of Utah.
Bush adviser Karl Rove is assessing the political implications of
acting
against anti-abortion forces and potentially alienating large numbers of
Catholic voters.
White House and HHS officials said they were hearing from all sides,
including one large and powerful constituency that does not often
register in
the public debate: baby boomers who see their children and aging parents
diagnosed with diseases that stem cell research might cure in the
future.
A poll released this week by ABC News and Beliefnet found that
Americans
support federal funds for the research by a 2-1 margin.

I actually just got a reply from my representative, who says that it might increase the number of abortions. Hmmm. What to do.

waverley
Just reporting that I contacted my Republican Congressman in Indiana as
suggested and urged him to read and consider signing the Dunn stem cell
research letter to the President. Hope you will all consider contacting
your representatives if you have not already.
Jerry Cash
If you do not wish to belong to shydrager, you may
unsubscribe by sending a blank email to

Just reporting that I contacted my Republican Congressman in Indiana as
suggested and urged him to read and consider signing the Dunn stem cell
research letter to the President. Hope you will all consider contacting
your representatives if you have not already.
Jerry Cash

Mary:
What better time to tell us how you and Warren met, then today on
your 54 anniversary. I would love to hear the story. Who said love
doesn't last? Happy anniversary.
Hugs Vera

Ok! now that we're talking about herbal medicine test, has anyone
heard of a Dr. Isai Castill in Mexico that has an altemative approach
to medicine. He does chelation therapy and introvainous therapy of
vitamins,minerals and amino acids? Freds sister is trying to get him
to try this approach. She feels that this is the answer from God to
her prayer about Fred. Would love to be armed with some answer on
this one.
Help
Vera

Louise,

When I saw patients with a pulmonary specialist, He told me he has his patients with un-productive cough and mucus retention use postural drainage.

I do not know if it is physically possible for you but the procedure is to have the patient lean over the edge of the bed in an head down position and someone raps firmly on their back to dislodge the mucus. Just a thought.

Is he on a mucolytic such as guaifenesin? This is a drug that adds more water to the mucus and makes it easier to cough up or suction. I take it myself and I find it makes getting rid of the mucus easier.

God Bless,

Jim Stark

Yo, Grace. Local drug advice here seldom approaches PDR or Merck quality. Some people believe asking for description printout conveys a lack of trust in both doctor and pharmacist. Anyhow, I always ask. Uses: This medication is used to relieve a dry cough and helps to loosen phlegm and mucous in the lungs so you can "cough-up" (expectorate) mucous...not for chronic, persistent or smoking, asthma coughs or cough that lasts more than one week, tends to recur, accompanied by fever, headache or rash. For other effects not listed, contact doctor or pharmacist.

Anyhow, the supervising home health doctor sent 60 tablets , 2 per day, 5 refills, no name or strength on container but HUMBID #p Q-BID LA TAB. (Or? the man is terminal??don't bother me with this request again?) We've used two suction machines, one on either side of the bed, for over two years. We've courted pneumonia since early February. How do you use this med? Yesterday Jan's peripheral oxygen was good but 99.8 Ax checklist today means 3.5 degrees fever for Jan. Medicare requires two consecutive days of more than 100 oral before reporting or even considering sending a nurse before the next scheduled visit. Ours is weekly. Summary reports are sent every two months--maybe even read--for Medicare payment to doctor and nursing agency. Patient signs at home and then agency paperwork is done in the office. Your system much the same? Doctors may never meet the nurse or patient. Old family doctor way was at least

personal. Are your services similar?

I always want to request information and the post rereads like complaining. How can a woman know what she feels until she hears what she says is more to the point. Do HHA services differ by state or location? Comparison sharing helps.

My computer developed severe gastrointestinal disturbances day before yesterday after eating my outbox, draft and delete letters. Told me so, but in screen squigglies with no attention grabbing noise as I checked Jan. It is 7:30 pm as I send this. Last posts at 4 in the morning probably were not spit out until 4 next afternoon. Can you note and post arrival time?

When you can, if you will, answer. Please.

LA Louise where the calabash gourds droop like Dali watermelons among elephant ear sized leaves. Have you seen the $60 square watermelons grown for compact shipping by Japanese truck farmers?

Whoopee!!!!!!! Remember how many said it would never work?

Love to you. Ralph and I would have had our 52nd this past June 24th. Time really has gone by in a hurry.

Love to you both.

--
"My friends are my estate." Emily Dickinson

Barb, help again?

Louise. Do you never sleep? I am sorry about getting this back late but this has been a very busy day. I teach a senior ladies class at church and they are falling out on me. One in hospital and one in nursing home. Today was the day I spent checking up on them. Both are doing well. Mollie, in hospital is 80 and Vesta, in nursing home, is 99. Lovely ladies. They have been helping me along the way for six years.

Now to get to your note. I will use it to answer.
*********************************************************
Suction machine isn't working well anymore for Jan and I try to roll him onto one side or the other after cleaning tonsil areas with kleenex Viva paper towels because they don't fray.
*******************************************
First you need to get a new suction machine or you will have an infection in his mouth and throat.

A wet cloth will work better than a dry kleenex or towel. It seems strange but it works. There is always the chance that some of the kleenex or towel will stick to the tongue and choke him. That is scarey and miserable.

***********************************************
He can't control his tongue and isn't resting well unless I'm up and making noise. I do sleep where he can see me and that seems to help. Was your aspiration procedure better?

I used the suction machine at the hospital. It had a long tube that reached in and pulled it out. Great gobs of phlegm. Rubbing his back from top to bottom might help. Even tapping it so he can cough it up.

********************************************* Jan's long rubber peg tube is disintegrating from stomach acids and constant cleaning of formula residue after nearly two years of use.
**************************************************
Two years of use of a PEG tube is too long. DEMAND a new one before infection sets up in there.

I use silver nitrate caustic around the stoma and antibiotic ointment on gauze dressings but coughing is causing leakage and he tremors his hands forcibly against his stomach there.

************************************************
He is probably in pain from the tube.
If it is leaking you are in danger already. If it is not secure in the stomach the fluids will leak into the abdominal cavity and then you have danger of peritonitis. That is really wicked. That is what happened to Ralph last April.
They had a very difficult time saving him, Tho they just saved him for more misery.
**************************************************
He has been taking Guaifenesin, a lung expectorant , for one week and the coughing is intense. Is mucus clear in pneumonia? Our problem germ has been pseudomonas which produced opaque greenish exudate. ! ; &nb! sp;*************************************************
Tests have to be made for pneumonia. And x-rays.
I do know that he may be aspirating already if he is coughing so hard
*****************************************************Did Ralph use Miralax for bowel elimination? It does nothing for Jan without daily stool softeners and milk of mag laxative and sometimes even then oversized Fleet enemas are necessary. This is preferable to impactions and large fluid enemas that must be siphoned out or gallon sized cleansing flushes to drink.**************************************************

Ralph took a daily dose of Milk of Magnesia but towards the end nothing but enemas worked. The muscles and little wave makers in the lower bowel were not working to move the fecal matter out. Not getting enough fluids will also slow down the movement.

*****************************************************You had so many painful crises and hospital experiences with Ralph and have shared so much I hesitate to ask for details, yet with you and others as pioneers and teachers comfort and better decisions for all 500 MSA sufferers is possible.

Yes. We had some painful experiences but I do not mind talking about them. If I can help even one care giver I will do it as long as I can still type. Like so many of you folks, I had to learn on the job.

******************************************************

I am sorry I cannot do more to help. Everyone is so far away.

I am up at all hours as you are, so feel free to drop a line. I check my mail several times a day and before I go to bed.

Thanks, Barbara and thanks to Ralph , too, for encouraging you to become the wonderful person you are. Louise in LA still searching for better ways to cope with MSA.**************************************************

You really must check on the suction machine and get a new line for the PEG tube.!!!!!!!!!!!!!!

Get some rest before you drop in your tracks.

Barb.

If you do not wish to belong to shydrager, you may
unsubscribe by sending a blank email to

Hi all, Just wanted to share that Warren & I will have been married 54 years
tomorrow. We aren't doing anything special but hope to get out for lunch or
early dinner.
Thanks for listening, Mary S.

Thank you everyone for the information.

Barb, help again? Suction machine isn't working well anymore for Jan and I try to roll him onto one side or the other after cleaning tonsil areas with kleenex Viva paper towels because they don't fray. He can't control his tongue and isn't resting well unless I'm up and making noise. I do sleep where he can see me and that seems to help. Was your aspiration procedure better?

Jan's long rubber peg tube is disintegrating from stomach acids and constant cleaning of formula residue after nearly two years of use. I use silver nitrate caustic around the stoma and antibiotic ointment on gauze dressings but coughing is causing leakage and he tremors his hands forcibly against his stomach there. He has been taking Guaifenesin, a lung expectorant , for one week and the coughing is intense. Is mucus clear in pneumonia? Our problem germ has been pseudomonas which produced opaque greenish exudate.

Did Ralph use Miralax for bowel elimination? It does nothing for Jan without daily stool softeners and milk of mag laxative and sometimes even then oversized Fleet enemas are necessary. This is preferable to impactions and large fluid enemas that must be siphoned out or gallon sized cleansing flushes to drink.

You had so many painful crises and hospital experiences with Ralph and have shared so much I hesitate to ask for details, yet with you and others as pioneers and teachers comfort and better decisions for all 500 MSA sufferers is possible. Thanks, Barbara and thanks to Ralph , too, for encouraging you to become the wonderful person you are.

Louise in LA still searching for better ways to cope with MSA.

Do you know how to do lung toileting for pneumonia prevention in rigid comatose patients? Would you describe it for us

LA Louise waiting impatiently for a lovely day after rain.

Ruth,
I am so sorry to hear about your husband Roy.. My thoughts and prayers
are with you.
Patricia

Hi Ann, Warren had great luck with his cataract operation. He sees better
now than even before, almost 20/20. Hope the flashing lights don't cause
any other problems. I'm late with this as have been off most of this week -
Dr's appt, everyday but today. Hope this finds you doing okay.
MaryS

Everyone,
I received a note from Ruth Kelsar, the person withSDS in her family, saying
that her husband Roy passed away on May 10. She said she has been swamped
with her own illness and taking care of him. They would have been married 54
years in the fall.
She said she has many friends and a supportive church family and she would
like to remain on the mountain as long as she can. She hopes to get back to
the list but she will wait a while.
I am sure that she would like to hear from you.
Jean (Phoenix)

Pam,
Thank you, I am going to read it. I can't help but read it after reading the
article.
God Bless,
Jim Stark

Subject:
ARTICLE: Embryos Of Hope
Date:
Wed, 27 Jun 2001 22:10:58 -0700
From:
Murray Charters <Murray_Charters@...
The Washington Post
Embryos Of Hope
By Richard Cohen
Thursday, June 28, 2001; Page A33
If George W. Bush reads just one book this summer, I hope it is
"Saving Milly." This is Morton Kondracke's account of his wife's
battle with Parkinson's disease and his own transformation from
a self-described careerist with more drive than talent to a mensch
who has achieved greatness in this one book alone. I finished it
last night in tears.
I suppose I should put my cards on the table. I have known Mort
since even before he was a regular on "The McLaughlin Group."
I know Milly, too. I know the publisher of this book best of all.
He sent me an early version months ago. I did not read it. I did not
want to read it. I did not want to read about Milly disintegrating.
My friend persisted. Read it, he said -- and sent another book.
Finally, for reasons of my own, I did.
Those reasons have to do with stem cell research. Stem cells are
derived from embryos that are five days old. These cells have
a special quality. They can develop into almost any cell in the
human body and, theoretically, can be used to repair any tissue
or organ -- heart, nerves, you name it. To use the cells, though,
requires killing the embryo.
To some people, the embryo is life. Simple. You had conception
and you got life. This is the view held by President Bush, not to
mention many -- but not all -- abortion opponents. The president
has repeated it many times, and he has said nothing recently
to suggest he has changed his mind. In the meantime,
his administration is going through the motions of studying
whether the federal government should fund stem cell research.
Much of the scientific community says it should.
Make no mistake about it, this is not the easiest of decisions.
It is complicated ethically and medically since, among other things,
stem cells can also be derived from adult tissue. Great claims have
been made for these adult cells, but the preponderance of medical
opinion is that the embryonic cells offer the best hope for curing
diseases. One of those diseases is Parkinson's.
So I read Mort's book. I read about Milly's unstoppable decline --
how at first she had trouble signing her name, then walking, then
talking, eating, turning over in bed, standing, drinking, controlling
her bowels. I read, in both shock and wonder, of Mort washing her,
changing her, feeding her, clearing food out of her clogged throat
and, through it all, loving her -- completely, physically. I read an
account of a love so huge that I shrank before it:
Could I do the same?
It has been years since I've seen Milly. It has been years since
she cornered me in the kitchen of her house and told me off for
ignoring her. Mort writes about that in his book. I had forgotten
the incident, but not her energy, her intelligence, the way she
was on my case for a long time afterward -- and her eyes.
The former Millicent Martinez is a magnificent mongrel -- half
Mexican (her father), half Jewish (her mother) and totally
communist (both parents). I was messing with the genuine article.
Like a virus, this exotic woman punctured the conventional
Kondracke's Brooks Brothers membrane, insinuating herself
into his life. She turned order into mayhem, their home into a dorm
and challenged his reflexive respect for authority. It was the
government, after all, that deported her father for his radical
politics.
She saw him off at the train station and within days he was dead
of a heart attack. Milly was 10.
There'll be no happy ending here. There's no optimistic, chipper
hero here. Milly is depressed. She wants to die. She also wants
to live. Sometimes Mort is in a rage. They have discussed suicide,
assisted suicide, the method and circumstances of her death.
On a given page, this book is almost unbearably candid. Mort
even admits that he thinks sometimes of other women and of life
after Milly. But Mort loves Milly and, if you read his book,
so will you.
This is why I want Bush to read the book. It will get him close
to someone with Parkinson's. Maybe he'll come to love Milly,
not as Mort does, of course, but in the way I did while reading
Mort's book. So when the president decides about stem cell
research and what, after all, the term pro-life has to mean, it will
not just be from briefing books or the cold counsel of aides
worrying about the antiabortion vote, but from what Mort has
written about Milly -- her face, its expression frozen, looking out
from the pages of this extraordinary work. No research can save
her. No reader can forget her.
© 2001 The Washington Post Company
http://www.washingtonpost.com/wp-dyn/articles/A55053-2001Jun27.html

Those of you who use or want to use herbal medicines should be
interested in this article:

In a message dated 06/23/2001 3:13:02 AM Eastern Daylight Time,
mrspedersen@... writes:
<< She suggested I put falcon caps on them, so they
won't get shot when they start flying.
For what it's worth, the caps are off when the falcons fly--they only have
leather thongs attached to a foot. They wear the caps when on the arm and
the caps are removed so they can see their prey when they fly (and see where
they are going). :)
Linda

'Sporadic' in this context simply means not hereditary. There are
many possible causes for sporadic ataxia, including vitamin B12
deficiency, alchoholism, (especially the two in combination), and
MSA.
A couple of times on this list an abstract has been posted from a
paper wherein the authors concluded that only about 25% of patients
with sporadic OPCA ever develop full-blown MSA symptoms. In only
a small number of these cases was a different diagnosis identified
as the culprit.

Hello,
MSA is considered a "sporadic ataxia" as there is no history of ataxia in the
family. OPCA can be hereditary or it can be MSA. Treatment is usually for
symptoms especially with sporadic ataxia, I am not sure about hereditary, but
I don't think there is a specific treatment for it either.
Is there something specific you want to know about them?
Take care, Bill and Charlotte
mmenar2001@... wrote:

Bill, did you forget, the thief was forgiven but he was not removed from the cross. He had to pay the penalty for his crime. Just as the Lord could not remove himself from his cross, though He had committed no crime.

A death bed repentance is just as good as any. Has the full affect of forgiveness.

In compromise someone has to give up their principals.

The unwanted "child" is already alive. Killing it is the wrong thing.

Denying aid when we can afford it is the wrong part, The denying for self gain is wrong.

Everyone has their own pet project and not all of them are affordable.

Having the money was not the bad part. The love of the money prevented the person from taking it off the beast carrying it so he could get through the Needle Gate. Very difficult to drop the material load. So he could not get in.

If everyone is "given" care someone else has to pay for it. How do we divvy up the expense?

Just thinking.
[INLINE] Help [INLINE] I cannot keep up with everything.

--
"My friends are my estate." Emily Dickinson

Hello Group.
Does anyone know anything about 'sporadic' ataxia, such as whether
its cause and course are different from the
'hereditary' ataxia? The following article is from a British
magazine, ATAXIA (www.ataxia.org.uk).
"These late onset ataxias are referred to by a rather bewildering
variety of terms
including cerebellar atrophy, spastic ataxia, Marie's ataxia, Holmes
ataxia, Marie-Foix, Alajouanine ataxia, cerebellar
ataxia, cerebellar degeneration, and olivo-pontocerebellar atrophy
or degeneration. These
terms do not have a great deal of specific meaning and there is not
any generally agreed way of distinguishing
between them. They are again very complex, consisting of a number of
different conditions, and can generally be divided into two groups,
those which run in families and those which
do not. The former are less common. If the disorder does run in
families, the ataxia is generally caused by a single
dose of an abnormal gene (different from that causing Friedreich's
and early onset ataxias), which can pass
from one generation to the next, with roughly half the children of
an affected person inheriting the disease. This
is called dominant inheritance. Those carrying the gene develop
unsteadiness in walking between the ages of
about 20 and 60. The ataxia gradually gets worse and spreads to
produce clumsiness of the arms and slurred
speech. Again, there are a number of different types of dominant
ataxia, some of which affect other parts of the
nervous system such as vision. It is impossible to make a diagnosis
of dominant ataxia unless someone else in the
family is affected, usually a parent. In some families with dominant
ataxia it has been shown that the abnormal
gene is on the sixth chromosome. Eventually it will be possible to
use this information to test for gene carriers
in some families. About two-thirds of people with ataxias
developing in adult life (sometimes up until the age of 70 or more) do
not have affected relatives, and we do not know the cause of these
disorders. They are sometimes called
"idiopathic" late onset ataxias (which basically means that no cause
can be found). Again we are probably
dealing with a number of different disease processes here. They
affect people in much the same way as
dominant ataxia. One particular subgroup of people who have later
onset ataxia without affected relatives have a
condition called multiple system atrophy (MSA). This term is used
because it is clear from neurological tests
that the person has abnormalities of different parts of the nervous
system. Apart from ataxia, there may be
features similar to those seen in Parkinson's disease, with slowness
of movement and stiffness of the arms and
legs. More specific is a problem with the nerve supply to heart,
blood vessels, and bladder. These nerves are part
of what is called the autonomic nervous system. People with MSA may
feel dizzy when they stand up because
their blood pressure falls, and they often have difficulties with
their bladder and a feeling of urgency
and wanting to pass urine. Impotence (failure to maintain erections)
is also a common early feature. MSA tends to
be a rather more disabling illness that some of the other late onset
ataxias. On the plus side, this is not an
inherited disorder so there are negligible risks of this being
passed from one family member to another.
Although ataxia can be a prominent part of MSA, it often mimics
Parkinson's disease in the early stages."

I was not on hte listserver then but here is a search of some. Best of luck :

3 first three articles are rodent models, the others are speculative into the potential of such research. If you give a librarian the PMID number that is a great link to locating the article.

J Neurotrauma 1999 Aug;16(8):675-87

Transplantation of neural progenitor and stem cells: developmental insights may suggest new therapies for spinal cord and other CNS dysfunction.
Park KI, Liu S, Flax JD, Nissim S, Stieg PE, Snyder EY.
Department of Neurology, Harvard Medical School, Children's Hospital, Boston, Massachusetts 02115, USA.
Multipotent neural progenitors and stem cells may integrate appropriately into the developing and degenerating central nervous system. They may also be effective in the replacement of genes, cells, and nondiffusible factors in either a widespread or a more circumscribed manner, depending on the therapeutic demands of the clinical situation. In addition, they may be uniquely responsive to some types of neurodegenerative conditions. We believe that these various appealing capabilities are the normal expression of basic biologic properties and attributes of a stem cell. The therapeutic utility of some of those properties is illustrated in this review of ongoing work in our laboratory, particularly with regard to spinal dysfunction. In these examples, we believe we have tapped into a mechanism that underlies a remarkable degree of natural plasticity programmed into the nervous system at the cellular level, and we have now exploited those properties for therapeutic ends.
Publication Types:
* Review
* Review, tutorial

PMID: 10511240 [PubMed - indexed for MEDLINE]

Conditionally immortalized, multipotential and multifunctional neural stem cell lines as an approach to clinical transplantation.
Gray JA, Grigoryan G, Virley D, Patel S, Sinden JD, Hodges H.
Department of Psychology, The Institute of Psychiatry, London, UK. J.Gray@...
Experiments are described using rats with two kinds of brain damage and consequent cognitive deficit (in the Morris water maze, three-door runway, and radial maze): 1) ischemic damage to the CA1 hippocampal cell field after four-vessel occlusion (4VO), and 2) damage to the forebrain cholinergic projection system by local injection of excitotoxins to the nuclei of origin or prolonged ethanol administration. Cell suspension grafts derived from primary fetal brain tissue display a stringent requirement for homotypical cell replacement in the 4VO model: cells from the embryonic day (E)18-19 CA1 hippocampal subfield, but not from CA3 or dentate gyrus or from E16 basal forebrain (cholinergic rich) led to recovery of cognitive function. After damage to the cholinergic system, conversely, recovery of function was seen with cell suspension grafts from E16 basal forebrain or cholinergic-rich E14 ventral mesencephalon, but not with implants of hippocampal tissue. These two models
therefore provided a test of multifunctionality for a clonal line of conditionally immortalized neural stem cells, MHP36, derived from the E14 "immortomouse" hippocampal anlage. Implanted above the damaged CA1 cell field in 4VO-treated adult rats, these cells (multipotential in vitro) migrated to the damaged area, reconstituted the gross morphology of the CA1 pyramidal layer, took up both neuronal and glial phenotypes, and gave rise to cognitive recovery. Similar recovery of function and restoration of species-typical morphology was observed when MHP36 cells were implanted into marmosets with excitotoxic CAI damage. MHP36 implants led to recovery of cognitive function also in two experiments with rats with excitotoxic damage to the cholinergic system damage, either unilaterally in the nucleus basalis or bilaterally in both the nucleus basalis and the medial septal area. Thus, MHP36 cells are both multipotent (able to take up multiple cellular phenotypes) and multifunctional
(able to repair diverse types of brain damage).
PMID: 10811390 [PubMed - indexed for MEDLINE]

Neuroprotective and behavioral efficacy of nerve growth factor-transfected hippocampal progenitor cell transplants after experimental traumatic brain injury.
Philips MF, Mattiasson G, Wieloch T, Bjorklund A, Johansson BB, Tomasevic G, Martinez-Serrano A, Lenzlinger PM, Sinson G, Grady MS, McIntosh TK.
Department of Neurosurgery, University of Pennsylvania School of Medicine and Veterans Administration Medical Center, Philadelphia, USA.
OBJECT: Immortalized neural progenitor cells derived from embryonic rat hippocampus (HiB5), were transduced ex vivo with the gene for mouse nerve growth factor (NGF) to secrete NGF (NGF-HiB5) at 2 ng/hr/10(5) cells in culture. METHODS: Fifty-nine male Wistar rats weighing 300 to 370 g each were anesthetized with 60 mg/kg sodium pentobarbital and subjected to lateral fluid-percussion brain injury of moderate severity (2.3-2.4 atm, 34 rats) or sham injury (25 rats). At 24 hours postinjury, 2 microl (150,000 cells/microl) of [3H]thymidine-labeled NGF-HiB5 cells were transplanted stereotactically into three individual sites in the cerebral cortex adjacent to the injury site (14 rats). Separate groups of brain-injured rats received nontransfected (naive [n])-HiB5 cells (12 animals) or cell suspension vehicle (eight animals). One week postinjury, animals underwent neurological evaluation for motor function and cognition (Morris water maze) and were killed for histological,
autoradiographic, and immunocytochemical analysis. Viable HiB5 cell grafts were identified in all animals, together with reactive microglia and macrophages located throughout the periinjured parenchyma and grafts (OX-42 immunohistochemistry). Brain-injured animals transplanted with either NGF-HiB5 or n-HiB5 cells displayed significantly improved neuromotor function (p < 0.05) and spatial learning behavior (p < 0.005) compared with brain-injured animals receiving microinjections of vehicle alone. A significant reduction in hippocampal CA3 cell death was observed in brain-injured animals receiving transplants of NGF-HiB5 cells compared with those receiving n-HiB5 cells or vehicle (p < 0.025). CONCLUSIONS: This study demonstrates that immortalized neural stem cells that have been retrovirally transduced to produce NGF can markedly improve cognitive and neuromotor function and rescue hippocampal CA3 neurons when transplanted into the injured brain during the acute posttraumatic
period.
PMID: 11354408 [PubMed - indexed for MEDLINE]

Hey All,
I have a friend who's 18 year old son sustained a serious brain injury in an
auto accident 6 weeks ago. I am trying to get her hope about future treatment
for such injuries. I remember a couple months ago reading an article about stem
cell research on rats where they brain damaged them injected the non-injured
side of the brain with stem cells which migrated to the damaged side and
repaired damage. I think I read this article on the Shydrager.com web site.
Does anybody remember this article and if so could you post it to me at
dawnmorley@...
Thanks,
Dawn Morley - Celeste O'Neill's sister

Hey, John, In addition to keeping us objective and balanced, would you
give us more info on quality sleep and effects of prolonged deprivation?
Gotta catch up on my zzzz pronto. Before I sack out (Jan already has)
wanted you to know you will be missed and are much appreciated. I'll keep
reading and keep my dreamcatcher nearby so's not to miss the witty comments
and discussion.
LA Louise knitting up ravelled sleeves--or trying to allatime.