So let's just undo the good these studies had on the affected. Let's just bury the information. Bad, Bad doctors for presenting information that may help many who found themselves on unfamiliar ground. Let's beat up on them. Some things are better left unheard. After all, these doctors had so much to gain by revealing this side-effect.

Oh and while we're at it, lets thank that committee that says breast mammos should commence at age 50. After all it will save a lot of money and only 3% more women will die. It's all about $$$$ and %%%%!

The Insurance Companies and Pharma will be sooooooooooo happy.

See....now I'm ******.

What a world.

Boehringer Ingelheim makes the most prescribed agonist, Mirapex. The company told us in a statement that two years ago it started warning in its package inserts about reports of compulsive gambling and that it is working with Parkinson's experts to "investigate the relationship, if any, between Parkinson's drugs and compulsive behavior."

The company suggested we call two of those experts. Drs. Matthew Stern and Daniel Weintraub at the University of Pennsylvania. Surprisingly, both doctors told us there is no question the drugs are behind the compulsive behavior.


http://transcripts.cnn.com/TRANSCRIP...22/pzn.01.html

Blue,
I don't think we are actually in disagreement.
But we will beat up on the doctors until they join us!
I no longer question that those drugs can cause those things to happen, and more. But if it is true, I would like somebody to do a real study on it. I know it's only for Parkinson's and so the money isn't there - it's not an exciting disease and the public never see us when we are writhing on the floor in pain because we do that in privacy. But those studies are make-shift science, wobbly as the dickens.
And here is one possible reason we are being served third rate science: I have seen brilliant researchers working late into the night to fill in all the forms and endless reports that are required, and they can't afford a secretary, and most of the digging for information is done by graduate students helping out free of charge. So you shoot your idea out there, knowing you really don't have a hell of a lot to back it up. But not having the resources to settle the question one way or the other. Best to fire off a warning flare, which the Mayo did. I thank them for that.

I get most of my news in French and it loses in the translation. But up here, in the space of a couple of years, we have seen the percentage of Parkies becoming addicted to sex or gambling escalate from 3%, to 6%, to 8%, and the Mayo itself was at 13% just a few months ago, and now it is 20%, and that is considered to be an underestimate.
Of 1,500,000 Americans with PD, that's 300,000 people. If the studies are correct, and the percentage has been doubling again and again in a matter of a few years, then this is a fast-spreading pandemic requiring emergency nation-wide medical intervention.
But nothing happens.
So maybe it's not 20%. Or maybe it is 20% but most of the "compulsions" are not deadly. If you read the research paper, there is not much there. But the video sent out to the world by the Mayo states its clearly: destructive gambling and unacceptable sex. 20% or more.
If they are right, it requires a major medical response, nation-wide.
If they are wrong, they are causing harm to people who have to live with the stigma - jobs are lost, apartments are refused, because of the 20% risk factor.
So, whassup doc? They found what - 7 people?
No budget I suppose. But once again the whole world hears definitions of PD that don't seem to add up to the disease I am familiar with. We seem to be constantly debating some other disease that is also called Parkinson's, but which is not familiar to us.
I have had contact with about 300 Parkies. Certainly don't know them all well, but according to this Mayo study, 60 of them are destructive addicts, especially gambling and sex. And you know I don't see it in them. Am I that blind? Sixty of my gang are suffering this? And I don't see that at all. So if this pandemic is taken seriously, somebody had better send some medical help to the 60 people in my group who are afflicted by this, but I don't know who they are. I don't believe it is true. But I am asked about it all the time.

I think any drug that goes anywhere near our brains can do strange things. (We found that out at Woodstock). I know that some people were given a pill for their ill and not warned to watch themselves carefully for emotional or rational changes of behavior or mood. Most of us were told it is a disease not to worry about - it doesn't hurt and it doesn't kill you, they said, not wanting to worry us, and these candy pills are better than uppers.
I know some people got hurt real bad by not knowing what the hell had hit them; not expecting that a little pill would turn you temporarily into a different creature. I hope they get compensated, because in a way they were guinea pigs sacrificed for the rest of us; category in which the Amgen volunteers are a staggering example for the ages.
But I deal with a lot of PWP and so it matters whether the percentage is 1% or 3% or 20%+
If it is 20%+, drastic, immediate action is required. If 60 of my 300 are destroying themselves and others, I might end up being one of the others, right?
But we check the scientific study, and there's not much there. So I should not worry about it?
That professor on TV sure was talking about a pandemic.

I think you forgot part of the equation. It would be 20% of parkies on agonists, not 20% of all parkies.

True. I was absent the day they taught science in school, and I don't grasp statistics much unless it's visual -- like 3 color blocks are bigger than 2; that kind of thing.

We are very passionate about our traumas. There is no doubt that a pattern of mirapex users were ruined, They lost their homes and families. i 'm one of them but i didn't gamble or engage in sexual activity.. i left mentally. i moved into cyberspace and became a prolific poster. it took me till last year - that would be ten years - to not "need" the motivation and inspiration provided by communicating at the levels where i can make a difference. This began with Mike Fox, and started out in disbelief and confusion at being so unlucky and lucky at the same time.

buti had hidden for years and who woulda thought all that time he was goijng thru exactly the same thing? so i became detached, retired, distracted,l couldn't multi task an eventaully wasn't there for my familiy as i could have been.

but they were all having their own crises. the girls went thru hgh school and junior high not doing anywhere near as well as they had been when i was more involved. i was involved as a cheerleader mother and active parent until they were in 9th and 11th grade and then our famiily felll apart. They didn't understand and my husband was stressed. but i'm up till 2,3 or 4 am giggling on the computer or even talking on the phone. it was backwards, mom was acting like a teenager.


the day i went to spin city with brenda and nan to meet mike was the first time i met my online friends in person. my husband dropped me off at the airport after fighting with me the whole way to the airport for spending so much moneyl But this was just too much fun. i hadn't been to NYC in ages and mike was also coming tto meet with us and about ten others -15 orthers at the hotel.

we ended up eventaully declaring bandruptcy. out beautiful home on the lake did not foreclose, it sold to a southwest pilot who wanted the house from seeing it on the internet. he is still there i think. they didn't take our property, we did''t owe that much,, but they took our credit and our pride. the family continued downhill sliding but i had cyberspace to run to. even tho i was very productive, my famil y didn't join me in understanding this illness. the girls were too moody and growing up under stressful conditions now and it became very traumatic for years.

My daughter had a baby and my other daughter didn't do well in school . it took years to resolve it and last year i left again for 5 months. now i'm back with my husband, but we have moved around so much we had to start over . i don't want or need material possessions , can't manage them. have to go pic my brother up at the airport. most of you already know my story. but this was trauma...heavy duty trauma.....and hard on the illness .....hard on us all. i lost my home and many posessions, but never gambled or got into porn or sex.

so trauma comes from ..........agonists? i think computer addiction islike gambling. you get the right hit and you come back for more . i question whether ldopa is just as destructive, but how can they take that away. will be back to edit gotta run;

paula

Hugs Paula. I know of what you speak. Being consumed with something that is so totally out of character that insidiously creeps up on you, until it feels like the norm.

I refused to declare bankruptcy. I took full responsibility for my debts, and am still paying for them (on a fixed income, I might add).

I'm glad people are aware of these SE. If it saves just 1 person from having to live that nightmare, I'll take the stigma that goes with it.

Thank you all.
You have confirmed it to me.
We are not the ones who have to whisper.

And deleting Anuket's comments, or throwing away her letters, no longer has the intended effect.

I must step away, but I say to you all, I see no contradictions. I see many parts of the Parkinson's story; expressed here on this site. I have never seen anything like it. Everyone's story is part of the picture.
Anuket has done great service for many years, and no Parkinson's YouTube gets to delete her words from their comments section ! PWP have been silenced enough.
Paula's stories knock me out.
Rick Everett helped launch my site with his dance, and yet I still don't fully grasp what he is talking about.
BlueDahlia's sentence is for the ages: "If it saves just 1 person from having to live that nightmare, I'll take the stigma that goes with it."
Right on. In our deepest hearts and hopes and prayers, we want to stop the nightmare; and would sacrifice deeply to rescue just one person from Dante's Inferno.
There's a slow train coming. I can hear it just around the bend.
Gotta go put out some fires; just saying that y'all are doing a mighty fine job. The passion, the pain, the humanity, the information, the determination. All here, now.
Ain't that America. (I'm not American, so I am allowed to stand and marvel. Not a safe place, but so very free.)