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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn --------------------------------- ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn Stay in the know. Pulse on the new Yahoo.com. Check it out.