Parkinson's Disease Tulip


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Old 11-13-2009, 08:10 AM #11
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Default Hi Bob

I have also been on Mirapex for ten years. I take a minium dose and am now able to sleep at night. Before I would be walking most of the night due to restless legs. I once tried to switch to requip with no luck. Because of the different genetic make up of all patients, what will work for one will not work for another. I know horror stories of people addicted to online gambling into $1,000,000 debt. Up to $10,000 is understandable, but beyond that, it is the patients responsibility to seek help for their problem.

My father abused me for 8 years. Yet after each incidence of abuse he ended by pulling me on his lap and insisting I forgive him. Obviously he knew what he did was wrong. He had a choice to seek help, or to continue. He chose to continue.

Patients must take the time to educate themselves and take responsibility for their own health. Practicing Physicians do not have time to keep up to date on research. see Minnesota and Parkinson's disease on YouTube. Press Bob's link and off to the right will list similiar videos to his and you should see and interview with the Mayo Clinic doctor stating authoritively some inaccurate remarks. Under you will find my comment with corrections.

Best regards,
Vicky
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Old 11-13-2009, 10:18 AM #12
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It has been stated and argued before......if you haven't been there, done that, you can't possibly know.....so I'm not gonna argue it again. We have enough on our plates.
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Old 11-13-2009, 10:31 AM #13
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Is it really possible for Mayo's to delete comments on You Tube? How can they do that?

(I'm sure they would want to!)

Bob, I see those comments when I follow your link???

I'm confused, not very technological.
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Old 11-13-2009, 10:53 AM #14
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Default Anuket

Sasha,
The Mysterious Anuket explains it on her site:
http://anukets-crusade.blogspot.com/

She has a link back to YouTube, where she re-posted, and so far they have left it alone.
Apparently as it is their "corporate" site on YouTube, they can moderate comments.
If you look back into Anuket's site, she has been calling for accountability in PD research for many years.
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Old 11-13-2009, 11:15 AM #15
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Anuket is a close friend of mine even though we have never met.
All vocals, all vocal harmony, and all instrumentation are from her, alone, recording on her laptop with a $20 microphone. She has young onset. 2 of her many songs:
http://www.youtube.com/watch?v=YuVv3MRkngU

http://www.youtube.com/watch?v=ZOKzx51NXto
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Old 11-13-2009, 02:39 PM #16
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Default just want to clarify

my problem is not with believing those who become destructively compulsive - i know too many. but i have a big problem with researchers who inaccurately reflect it to cya or capitalize, or for a personal agenda at the expense of a fair and accurate study.
paula

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"Time is not neutral for those who have pd or for those who will get it."
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Old 11-13-2009, 03:11 PM #17
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Thanks, Bob -

I had no idea that anyone had a corporate site on You Tube. That explains their control over it for sure.
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Old 11-15-2009, 09:50 AM #18
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I start out naive on every issue. So there are some people on this site who agree that 20% or more of Parkies become destructive with compulsions to gamble and hypersexuality? I can see that in the final stages if dementia sets in. Cases of patients physically attacking loved ones; totally out of control; taken out of the home and sent to a hospice to die. Dementia.
But Parkies still functioning in society... for sure there would be some... but I see it as being very rare; not one in five or more. Please tell me what you see. Is it the extent of the compulsion, the severity, that we disagree on?
Because I have been getting complaints from men taking Mirapex, Seligilene and Levodopa, that because of this controversy, the doctors have not only reduced their dosage of Mirapex, they have also STOPPED GIVING THEM VIAGRA. But fortunately, the men say, Viagra is easily available in the mail and on the internet. Without the Viagra, they say, the problem is the opposite of hypersexuality.
So I am crazy or are they crazy or is everybody else crazy? I have lost track of the New Normal.
Again.
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Old 11-15-2009, 11:40 AM #19
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Default Pharmaceutical research

(Once again how does one "educate oneself" as to the science of disease and treatment when one cannot trust the information out there, even if one were able to understand all the science involved [and no one knows for certain what causes PD; all the areas involved--how and why; all the effects of drugs given; what are the adverse effects for an individual patient; how genomics and pharmacokinetics are involved in each individual's response to therapy, etc. etc. I fail to understand how anyone with or without PD, unless he/she is a movement disorder specialist, can know all this stuff. Perhaps my husband and I are both too old..though never thought early 60's was really old,having a mother who lived to 96 with all cognitive abilities, completing crosswords puzzles and sudoku up to time of her death. and husband and i both have strong science backgrounds/foregrounds. We do the best we can, interpreting the studies and info available, and trust husband's movements specialist for the rest. And we don't blame ourselves if we all get something wrong thru lack of knowledge/misinterpretation. There is just too much stuff out there.]
The article referenced below features quotes for 4 of my favorite scientists/physicians: Dr. Curt Furburg, Dr. John Ioannidis, Dr, Beatrice Golomb, and Dr. Jerome Hoffman, showing my bias...)

Jeanne Lenzer has penned a great article published in Discover Magazine titled "Wonder Drugs That Can Kill
Modern- pharmaceutical "breakthroughs" sometimes do more harm than good. "

From the July 2008 issue, published online June 20, 2008


http://discovermagazine.com/2008/jul...-that-can-kill
(Excerpt
"How often do today’s medical 'breakthroughs'
become tomorrow’s discredited
science? John P. A. Ioannidis, an epidemiologist
at Tufts University School of Medicine ...examined the most-cited clinical studies
published in the top three medical journals
between 1990 and 2000 to see how well
researchers’ initial claims held up against
subsequent research. His findings, published
in JAMA, show that the key claims of nearly
one-third (14 out of 49) of the original research
studies he examined were either false or exaggerated.
Small study size, design flaws, publication
bias (failure to publish negative results
or duplication of positive results), drug-industry
influence, and the play of chance were among
the problems Ioannidis found that caused false
or exaggerated claims...
Studies can be designed and interpreted
in ways that make even ineffective drugs
seem like lifesavers, says Curt Furberg,...cardiovascular epidemiologist
and former chief of the clinical trials branch
at the National Heart, Lung, and Blood Institute.
... Furberg...
wants more objectivity in medical research.
'We need more publicly funded studies,' he
says, adding that manufacturer-sponsored

research tends to minimize risks and exaggerate benefits.
A score of studies support his opinion. .. 2003 analysis by Cary P. Gross, an associate professor of medicine at Yale
...published in JAMA. ...found that industry-sponsored research was positive 87 percent
of the time compared with 65 percent positive for research that
was not industry sponsored. According to Gross, the evidence was
overwhelming that “industry sponsorship was likely to yield proindustry
results.” A 2006 analysis published in the American Journal
of Psychiatry found that 90 percent of manufacturer-sponsored
studies of antipsychotic drugs led to claims that the study drug was
as good as, or superior to, every other drug in its class. Shannon
Brownlee, an award-winning medical writer based in Washington,
D.C., ascribed this to the 'Lake Wobegon effect,' which renders
every drug “above average.”

(Dr. Furburg was removed from the Drug Safety committee reviewing info on COX-2 inhibitors, specifically Vioxx. He gave his opinion to the NYT that he thought Bextra use was also associated with heart attacks. He was removed from the committee because of 'bias'. )
... Furberg now asks, 'If
bias was a concern, why did they allow 10 advisory members with ties
to the manufacturers to be seated?' He was reinstated to the panel
two days later and vindicated when the FDA announced that it had
asked Pfizer to voluntarily withdraw Bextra from the market..."
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Old 11-15-2009, 12:02 PM #20
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Exactly. Prior to the 2003 Stacy study, no one had the faintest idea that Mirapex was behind the compulsions. The state of mind that drug can put some in, is very hard to understand, let alone explain.
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