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Hi Joan,

I don't mean to discount or question the reality of the experiences people have had with compulsive behavior, nor the magnitude of damage that can be sustained and affected. The questions are 1) is pathological gambling occurring with greater frequency among people who are taking DAs, than among those who are not, and 2) if so, are the DAs responsible?

And none of the first three studies that received so much publicity actually support the theory that DAs increase the risk of gambling.

the author of the first study said my calculation, which showed that there was no statistically significant difference between the incidence gambling among those on mirapex vs the incidence in the general population, looked right to him. the man said a calculation that showed that he did not, in fact, find any association, looked right to him.

the author of the second study refused to answer my questions - the most relevant being "what was the size of the population taking mirapex," because without that, the number she put forth as proving a *causal relationship,* not just an association but a causal relationship, is meaningless -- she found 11 people who gambled  on mirapex - well, if it was 11 out of 11, and the incidence in the general population was 1 out of 11, then (if the number weren't too small as to be meaningless anyway) the confluence of the drug and the behavior is less likely to be due to chance. if, however, she found 11 out of a population of 10,000 who gambled on mirapex, and the incidence in the general population was 500 out of 10,000, then mirapex could very well be associated with a *reduction* in the risk of gambling compulsively - it is a plain as the nose on my face that given the information she omitted, that study is absolutely meaningless - and, in fact, was characterized as "badly
 done" by a gentleman at the Office of Research Integrity.

the third study is really a research letter to the editor, and it is therefore unclear as to the level of review it received. I can guarantee you that the raw data was not reviewed, because if it had been... that "study" omits information of such relevance that had it not been omitted, the study would have shown absolutely NO association between gambling and mirapex, and on this one, i actually HAVE the raw data, and i can give it to anyone who is interested - of the three publications, this one is most vulnerable to a charge of scientifiic misconduct.

my point is not that people haven't behaved compulsively on DAs, and my intention is not to deny that devastating things have happened - my point is that not one of these three studies shows that it found an association - these studies do not support the theory that there is an association. *maybe* there is an association, but these studies failed to find it, if there is.

if you were to read them, you would see that virtually everyone was also on levodopa - but that fact is completely dismissed. you would also see many of these people had just had to have their medication adjusted - i.e.., increased - well, we all know what that means, don't we? it means things were getting worse, and that is depressing. people gamble when they are depressed. you would see that the first study was done in a retirement community in an area where there are alot of casinos. you would see in the second study that out of the 11 who gambled, 4 of the people she included started gambling anywhere from 1 year to 2.5 years AFTER either starting or increasing their DA therapy - but she included them because the gambling stopped within 1 month of discontinuing DA therapy - well, in 2 out of 4 cases, at least. it took the 3rd person, who started gambling *2.5 years* after starting DA, 2-6 months to stop gambling. and the 4th person, who started gambline after *a year*
 on DA, was lost to follow up - in other words, she has no idea if this person EVER stopped gambling - and yet, this person is included.  and if you read the studies she cites as supporting her assertion, several of them do not even come close - they do not blame DAs at all for the compulsive behavior - and one even explicitly says DAs appeared to have no effect on compulsive behavior at all.

i have surveyed the history of this listserv looking for any evidence of all this anecdotal stuff *before* the first study came out - i found one man who struggled with a gambling problem for years openly on the list, a problem that developed after his *pallidotomy.* as far as DAs, there was one person who posted once to the list, ever, who blamed his DA therapy for his gambling problem - can't remember whether it was before or after the first study. but it wasn't until *after* the first study came out that people started talking about all these horror stories about gambling, which kinda damages the credibility of the anecdotal stuff, because if it  were  *really* associated, it surely would have shown up on the list serv....or in the clinical trials, or in the six years mirapex was on the market before the first study was published - but it didn't, doesn't, isn't.

there is more, more, so much more, but i even i am tired of this - the bottom line is that i have done quite a lot of research on this.

i have not only read the studies backwards forwards and sideways, i have read the studies cited by the studies backwards, forwards and sideways. i have consulted researchers not associated with the studies, i have consulted a statistician. i have corresponded with authors on two out of three of these publications - quite extensively with one - the third refused to speak to me. i have requested and gotten, under the Freedom of information Act, the actual raw data regarding mirapex, levodopa and carbidopa (three of the 6 or 7 drugs that were tabulated) upon which the third study was based. i have gone through literally thousands of reports to the Adverse Event Reporting System database, for levodopa, carbidopa, and pramipexole, cataloged and charted the gambling related reports.

i have all of this information and would be overjoyed to give it to anyone who is interested.

if folks want to believe the hype, if folks want to be governed by anecdote, that is their prerogative. but as far as assessing the validity of the three studies that started this fire - because there was *not even a spark* before the first study came out - there can be no question that i have done my homework.

"'And that's the truth!" as little lily tomlin in her giant rocking chair would say.



Joan Snyder <[log in to unmask]> wrote: debbie and mackenzie:
i am sure that OCB is not happening with everyone who takes dopamine
agonists and i certainly cannot and do not look for something to blame
for the choices that i have made but i have heard enough horror stories
from people all over the world who have done things completely against
their nature for this thing to be called "a crock." but i have no
evidence nor can do anything except to tell you my experience. i would
only like to help others who may have this problem with whatever the
addiction to find help and i believe that this is a good website to
check out if you are so inclined.
on saturday, sept. 9th, i was given the opportunity to speak at the
democratic unity dinner for illinois. this was the 3rd year in a row
that i was asked. i was overwhelmed by the company that i was keeping!!
i sat at the head table with Senator Dick Durbin, Congressman Lane
Evans, Congressman Jerry Costello, Congresswoman Jan Scharkowsky, the
first female president of the afl-cio, judges and other luminaries along
the man whom Lane Evans has endorsed to take his seat in the US House of
Representatives, Mr. Phil Hare. here is a copy of my speech:

Good evening ladies and gentlemen.
It is a fact: I don’t know Phil Hare as
well as I know Lane Evans. Lane & I
share a common disease that lends
itself to a somewhat “cosmic
consciousness” of knowing what the
other is thinking without speaking.
But over the years that I have known
Lane, I have had the opportunity to
watch Phil in his dealings with Lane
& that relationship tells me all I need
to know about this man and to
support him in his run for the House
of Representatives. I understand the
almost unbearable strain that comes
with seeing someone you love being
stolen away by a disease that you
are helpless to deal with. Phil never
treated Lane with anything but the
utmost respect. It is easy for
a person with Parkinson’s Disease
to fall into the role of victim; of
adopting the “poor pitiful me”
routine and allow
the caregiver/employee/friend to
assume a more vigorous role in this
complicated alliance. It becomes
easy to assume that just because a
person’s body goes to hell that his
mind isn’t also out to pasture. Andrea
Lane Zigna has yet to figure this out.
In all the times that I saw Phil with
Lane, Phil never once talked down to
Lane, never got cross because it took
Lane perhaps more time to get up
and get moving, never indicated
irritation with Lane’s soft voice
and I know that Phil never spoke to
Lane in that
annoyingly cloying way that people
reserve for idiot savants.
This tells me that Phil has many of
the qualities that I wish to see in my
elected official:
compassion, integrity, commitment,
the ability to empathize, devotion,
and a humanness in his heart. I have
never met anyone so willing to take
the pitches, the swings, the misses,
the wins and the losses
as Phil Hare. He realizes that this is
an awesome task for anyone to
attempt…to fill the shoes of a bona-
fied hero but yet he has the
gumption, the good ideas, and the
brains to know that in this country,
we can do better.
We can do better than to send our
Sons and our daughters…our
brothers and our sisters to die
in a country that spurns our
desire to help them and mutilates
our soldiers.
We can do better in treating our
seniors on fixed incomes who must
decide to buy either home fuel or
prescribed meds.
We can do better in our attempts to
bridge the gap between
church & state to celebrate the diversity
for the majority of the people
rather than to be held hostage by
one group and one faith.
We can and we must do a better job
of what is a cause near and dear to
my heart: stem cell research. I am a
Roman Catholic; proud to call myself

pro-life and I am also a firm believer
in embryonic stem cell research. We
cannot continue to keep our
researchers from exploring all
avenues of scientific inquiry and
expect to remain a leader in
world health.

_We_ _cannot continue to equate stem _

_cell _ _research with abortion. The two _

_are not the same._
Which seems to you
as the more pro-life position: to
protect the invisible divided
cells which have been frozen from
eggs which were fertilized in a petrie
dish rather than from an act of love,
which are considered “leftovers” by
the couple who use this method to
conceive in-vitro; will never
become implanted in a woman’s
womb, will never become a baby and
are destined for incineration as
medical waste or to use these
undifferentiated cells to help, say a
man like my friend Allen in
Texas? Allen is a 50 year old,
married father of four who always
led a productive life. He worked as
the sound director at his local public
TV station, paid taxes and would
never think of acceting a
handout…until
pd entered his life. Now Allen sits
in an apartment
alone because his wife split and took
the kids (a common fact of life for
many people with Parkinson’s). She
was overwhelmed by the far-
reaching consequences
of this damn disease. Allen spends
his time reaching out to people on
his computer, trying to help others in
his situation not to loose hope.
He hasn’t worked in 5 years and
collects social security disability.
Allen never complains-most parkies
don’t-they know that others have
heavy crosses to carry. I don’t see a
moral dilemma here.
I cannot understand why abortion,
in-vitro fertilization and sperm banks
are legal yet it is immoral to use
these stem cells for the good of
humanity.
As Governor Rod Blagojevich said:
“It would be wrong to ask sick and
injured people and their loved ones
to wait for the tides in Springfield and
Washington to change before
research into potentially life-saving
cures can move forward. That’s why
I am directing $5 million in state
funds this fiscal year to continue
supporting the research being done.
Investing in research that can save
lives and prevent serious illnesses is
more than a sound public health
strategy, it’s our moral obligation.
I personally feel that Bush’s veto of
the stem cell legislation passed by
both houses of congress is a crime
against humanity.
Having said this and hoping that
there are no FBI-types nor homeland
security guys hanging around, I
would like to take this opportunity to
introduce you to a man who is a
professor and a dedicated stem cell
researcher at Bradley University in
Peoria, IL. His work has given me
and many others with parkinson’s a
reason to hope and to believe that a
cure is possible in our life-time. This
man is Dr. Craig Cady. Dr. Cady can
tell you why it is imperative that he
be able to add embryonic stem cells
to his already groundbreaking work

with adult stem cells, rat stem cells
and cord blood stem cells. Even his
students know how important it is.
One intern at his lab this summer
says: “The primitive nature of
embryonic stem cells makes their use
in research an absolute necessity to
understanding the potential of all

stem cells for the treatment of PD
and many other diseases.”
I believe that a cure is out there.
I believe that Phil Hare is the man
that we need in the United States
House of Representatives to help us
get the legislation passed that will
override a president’s veto.
I believe in you and the rest of the
district to vote for the man whom
you know in your hearts will carry on
the great work of Lane Evans.
I believe in Phil Hare for the House
of Representatives!!!

i think that the speech went over pretty well.


--
Joan Blessington Snyder   54/16
[log in to unmask]
www.calipso-pd.org
“Hang tough……..no way through it but to do it.”
Chris in the Morning      Northern Exposure

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