Yeah, I've heard of doctors being paid to hush up about any negative aspects of a drug. Could it be possible they are now being paid to spill the beans??? Lord have mercy.....hehehe!

Bob.....fuggeddabout id. It's not so good to get so worked up over this. Whether its 10%, 20% or 50%, we can't control what others think of us. You should see some of the looks I get when I'm dyskinetic and in public.

1. I do not suggest any bribery is involved. Just shoddy science and irresponsible projections not based on anything.
2. My group has 300 people on agonists, 20% is 60 people destroying themselves
4. We can't find even 1, let alone 60
5. There have been acts of aggression against them.

I reject the false accusations against my group of people. You've got 7 Americans at the Mayo with gambling and sex problems. Your scientist is projecting that onto farmers and woodsmen far distant from your seven victims of agonist drugs. Your 7 become 60 here. We have discussed this among our 300. Where each one of the 300 is grouped with others for years of mutual help, in small towns and rural roads where everybody knows everything. We say this: your study is for the seven people who paid to go to the Mayo clinic. A parking lot full of Volvos. Of course their problems are money and sex. But to project that percentage onto farmers and woodsmen in Canada is pure B.S. It is simply, factually, demonstrably, a false accusation against an entire group of people around the world. We are defending ourselves, here, locally, on the ground, from this absurd pseudo-science. That's why I came onto this site. To state that my 300 do not include 60 addicts. It's disinformation based on shoddy science. YES the drugs screw people up NO they do not screw up 20% of my people about money and sex. In fact the social control here is so tightly bound, we can't find ONE person gambling or sexing. They have OTHER PROBLEMS not at all related to the American obsessions and hang-ups about sex and wild-west behavior in the saloons. The agonist drugs SUCK but the people here are not stealing money or raping children. They are suffering, but turned inward, not going to Vegas to party.
I heard that 20% of U.S. Marines commit sex crimes. They found 7, but we projected it. It's that level of "science" that we have to waste time and resources defending ourselves from.
We thought maybe something could be done at this level of national discussions on the internet. Nevermind. We are returning back to the local level; go door to door to repair the damage done, and re-assure our country neighbors that those news reports (front page news here) are a crock of B.S.
That's all. Our position on this is self-defence. I promised my group to speak. I did. It was a waste of time. Now it is back to local self-defence. We just shut the door on the PD inferno and take care of each other.

All I can say is I don't own a volvo.......and "whatever". I'm not only offended....I'm out of here. The whole tone of your diatribe alludes to the fact that this problem does not exist. CYA!

P.S. You indicated in an earlier post that you were approached by a law firm to testify. There's only one law firm in Canada handling the Mirapex lawsuit and I know they haven't called on anyone to testify.

Bob - Obsessive/compulsive disorder comes hand in hand with PD - because both are linked to our dopamine systems - when it is screwed up and when we try to fix it with medications - agonists or levadopa - it can make things only worse. The real education that needs to be done is NOT denying this problem exists, but helping people with obsessive/compulsive behaviors be aware that it is NOT THEIR FAULT and by giving them enough support to reveal themselves in order to get help.

You have no idea what goes on behind closed doors in your community, and not a clue as to the magnitude of this disorder suffered by PWP.

Signed,
An OCD in constant recovery (and I know many on this board personally who are as well)

Sorry to have offended. My Volvo joke is to the effect that the direction the problem takes may vary by culture. Up here, when you get far from a city on unpaved roads, the problems we see are not gambling and sex; booze and Vegas, extroverted and active. We see PWP turning inward, becoming more isolated, cutting themselves off from the human race, and committing suicide. I don't know if it relates to stories about the murder rate in Spain being about the same as the suicide rate in Sweden: one culture, they kill themselves; the other culture, they kill somebody else; the rate of disaster is about equal between the two. Maybe city people on agonists turn outward; isolated country people turn further inward. I don't know. I just know that up here, in some cases, it would be a relief to find out that they have gone to Vegas. We check on each other; you go up the driveway, the lights are all off, the door is open, the dog is in a corner whining. Please, please tell me he went gambling. We searched for one man all day - he had dragged lumber into the forest, built a little platform to lie down on, and slit his wrists. He was lying there facing the sky. Is that compulsive? I don't know. I can't do this any more. I have to get away from all of this
I know that it's not the fault of the victims of the drugs; but I feel like scolding the newbies who are not broken down yet, yelling at them to anticipate that a brain drug can do terrible things; they, their families and doctors et al must be vigilant to watch for changes in behaviour and personality; pills are handed out like candies, and it astounds me that it still goes on. Those of us who went through the "drug-addled" sixties learned that bitter lesson then. Many, many, decent kids blew away their lives - on LSD and everything else going - also handed out like candies. I thought the lesson about brain-altering drugs had been learned. I was wrong. Again.
I also scold the scientists, because I think that the entire PD research system is dysfunctional and unproductive.
As for the lawsuits, I have had lots of correspondence with law firms in North America and Europe. I make them angry too. I will now cease and desist and shut up. But here is how I found the lawsuits:

http://www.google.ca/#hl=en&source=h...632e1fcd336022

http://www.google.ca/#hl=en&source=h...632e1fcd336022

http://www.google.ca/#hl=en&safe=off...632e1fcd336022

Bob - I totally believe and understand your angst - what I don't understand is why you are blaming the messenger - the Mayo Clinic - for exposing a terrible truth about living with PD? We need that kind of exposure to be able to push the limits on research to find new, better treatments and a cure. For every 1 PWP who goes public after losing his house to gambling or wrecks a relationship because of obsessive, inappropriate sex - or even too many hours on the computer - there has to be many, many more who are too afraid to come forward.

My anger would be not at the research that exposes an uncomfortable truth, but at those who would ostracize someone with a terrible physical and mental health condition - they are bullies.

bob,

i didn't call it bribery. it's consulting ......cough.....

here's where the problem lies IMHO and both blue dahlia [please don't leave] and bob are paying the price of the agonists in their own ways. Neither of you is to blame, you are just suffering in different ways . The problem is the science and the consultation fees they are paid.

heres' what i want to know.

why do they get away with just saying potential conflicts of interest at the bottom of the article and that's it. What are these conflicts of interest and how far off are we in thinking they could be paid millions to protect companies with quick science?

blue dahlia i see your point about wanting people to know. we're only talking differences in number or degree.

you are both victims...so let's go after the solution and not let them get away with just listing potential conflicts of interest. i am a bulldog when it comes to watchdogging.

woof woof--gggrrrrrr!
paula

I did not mean to drive out BlueDahlia. She has far more right to be on this site than I do, and when anybody posts as much sheer beauty in the art section as she does, all I can do is take off my hat and bow down to her. And Paula's woof woof--gggrrrrrr! is exactly my language, although I tend to howl more than woof before I growl.
I don't shoot the messenger, I slap them around. There has been a huge political uproar in my gang about 2 things: the 20% or more. We had a study at 1.5%; then in Alberta it was 3%; another Canadian report put it at 10%; Mayo outbid them at 13%, and then Mayo went nuclear at 20% or higher. All that in a couple of years; up here you've got suicidal Parkies being told that their problems are gambling and sex;
and, the reports in the Lancet and some journal of American doctors, to the effect that 55% of medical research papers are never handed in for scrutiny; of those that are, 31% had falsified, altered, or substituted the primary conclusion of their research. My group sees that as criminal fraud.
Full-scale revolt in my group. So I calmed them down by promising to go out and slap everybody around. We've got billions of dollars in lawsuits, the patients suing those who are supposed to help them. Lawyers collecting 50% to 75% of the take. Scientists falsifying their reports. Acts of aggression against those who are said to commit sexual acts that are never named, always insinuated. A complete failure of research for 60 years. Andy Grove being booed down. Big Pharma breaking all the laws of man, nature and God. People taking brain drugs and being surprised when it affects their brain. Remarkably poor quality research in some cases. The 20% addiction rate broadcast around the world as an accusation, to people who are isolating themselves already and discussing how far into the disease you should be before you kill yourself - wait too long, you won't have the ability to do it. Researchers refusing to share information. Battles for market share - Mirapex was gaining more market share than a gentlemanly cartel would allow. Drugs that cause side effects as bad as the disease. People fired from their jobs, driver's licence revoked, refused apartments and bank loans, even though in the early stages. There is no war against Parkinson's; it's a self-satisfied industry that is doing very well just the way things are. And yes, lawyers called me, suggesting very concretely that I could be a valuable attack dog if only I follow their script.
The Mayo family from the 1880's era were generous and brilliant and ahead of their time. The Mayo pioneered patient-centered medical care. I believe they would not have treated the volunteers with the callousness and contempt that Amgen was addicted to. So I end up slapping the Mayo around more. They are supposed to do much better than that.
In the lawsuits, PWP have to demonstrate that they were unable to control their own actions. Because of the drugs. But the drugs themselves are very similar to the disease. It will end up, I fear, that the conclusion will be that PWP do not have free will and are a danger to themselves and to others. It is a dangerous argument to win. And are fava beans any good? Each of us, alone, has to try to figure out what to do; and it's hard to figure out who knows what they are talking about. You are told you have PD, and then slowly start to find out all these things, and realise that there is no war on Parkinson's. Billions of dollars are sloshing around in the lawsuits. The U.S. taxpayer pays $200 million per year for PD research. That's how we found out not to eat pickled herring. Private donations add to the $200M tax dollars: Canada and Europe and Japan et al spend millions more. China is becoming aggressive in this - they have 1.3 billion people, an aging population, and there is one estimate saying they will have 30,000,000 PD cases. In America, the aging boomers will dramatically increase the number of cases. The Amgen GDNF story goes from patient to patient, often mistranslated in the French tabloid papers up here.
All put together, it is a disgraceful situation. 31% of medical science reports are falsified, and they judge us? Or maybe the report about falsification is also a falsified report.
A body is very difficult to carry out of deep forest. My PWP gang were in revolt, and a few of the old druggies are fairly crazy; I placated them all like a third-rate politician by promising them to go out and slap around everyone in sight. This is only one of the sites where I have blackened the pages. I have been making a nuisance of myself in a number of countries. When the Mayo report was published here as an accusation that 20% of us are causing a crime wave, I got several hundred e-mails and 30 phone calls from people wanting to fight anybody and everybody. The first 20 chapters of my book on the internet are entirely devoted to unity and optimism in fighting PD. I repeatedly call on the scientists, artists, and all, to unite and get this thing done.
That's just how naive a country boy can be. And in different forums and meetings and e-mails, I have offended pretty much every faction involved, including my own PWP gang. An equal-opportunity howling wolf.
My posting is starting to look like an addiction- seriously - and I would be safer to kick cold turkey. I thank you all, and I pray that the angels pour mercy on all these wounded hearts.

That sounds like an interesting gang. Truly. I think we all have something to offer and we should try to fill all the skills we need. That would never end really. But attitudes ....oh what work they make that to even try.

Here's a thought ...did the # of gamblings and the rest increase, as more people heard and it happened because they were told it woud happen.

expectations..paula

Bob,

Many here know my story - mirapex made me ocd - working on photoshop on the computer 24 hours a day. My particular obession has been documented by Boehringer. (anyone with ocd caused by mirapex should contact Boehringer - they are required to document every case brought to them) Has anyone asked Boehringer about how many cases they have on file?

Once I tritrated off mirapex, I got my brain back. (And I did it twice! ) I'm just glad my obsession was "benign" (i.e. no huge $$$ lost -- just time at the computer)

Jean