I thank everyone for getting involved in this discussion.

But again, why are we afraid of sounding like we're whining? Lets' face it, we cannot bring things out into the open without sounding extremly disgruntled.

And why are we hedging about the political implications of this? It is inherently extremely political. Not in the same way, but in many respects to the same degree that the AIDS crisis was. And those activists probably alienated many people -if not most - in the medical establishment, in conventional society...BUT, they got their drug approval process fast-tracked by the FDA, and that is the bottom line.

We have to face it, curing us is a profoundly political request. It says that an increasing population of cash cows will no longer enrich many people, including many people we know and love. Disseminating the truth about at least a large part of the cause means turning society's critical eye to the pesticide companies, to the food companies, and that all on top of the pharma companies, AND the doctors. And insurance. Yes, it inevitably strikes in some way at the very structure of our society. But that structure is a big reason why we're still sick. We can all do our personal work about releasing our past tensions and traumas, or being responsible for our genetic material if you look at it in those terms. But at a certain point, we have to say the existing paradigm has not or certainly does not now serve us. It has to change. That means people who work for insurance companies with bloated administrative and other costs will lose their jobs and have to retrain. It means stockholders in the pharmaceuticals will make less money. It means if you have a pesticide company, you might have to rethink your life. Yes. That's what our issues imply and what it will take to correct them, or save the many Early Onset PWP ready to appear just around the corner.

A book is nice. We could do it. ANd a website, a Wiki structure, whatever is a good idea also. So is a video. What is going to make anybody watch or read these things? Monkeys in the Middle is a very informative book - how many people have read it in the PD community, let alone outside of it?

I realize I don't know the latest on the Amgen machinations, and maybe they got something new up their sleeve that will be helpful soon. But maybe not. Maybe it will just get to the same place before another blind alley is traveled.
I love that full-page ad, but you are right, probably hardly anyone read it or cared about it.

BUT what if we put the same ad in the NY Times, and every PD organization ran it on their home page? We are going to have to make people uncomfortable to get anywhere. What if we took the text of a certain patent application for mucuna that clearly states that levodopa therapy is neurotoxic, written by one of our foremost neurologists, and published it everywhere? What if each one of us took it to our doctors and said, please explain this to me? Is this true? If so, why haven't I heard about it?

That's a whole lotta courage and I know people are in different places at different times. That's why a coalition of PWP who collectively can gather their moxie to speak out as much as necessary could be very helpful. And maybe we would start with a few clear goals: make sure the world knows about Amgen and GDNF. Expose the toxicity of L-dopa if that is indeed true.
For US people, find out why PD drugs cost so much more (like 10X) for us than for everyone else and demand that that change.

But we would have to be totally in the face of everybody and not afraid of seeming like we're complaining. We are. Mightily. We need to find a direct way to approach hospital staffs and let them know exactly what PD patients need. We need to do a massive public education initiative both of patients and doctors, that patients need exercise. ANd sophisticated nutritional counseling. They need to know before they start taking these prescriptions that once they start, there may be no way of ever stopping them.

It's hard to corral all of this into something coherent, and I know you guys have been trying. I just see this as something that has to be incredibly proactive and uncompromising or else it will not amount to anything. Confrontation is indeed stressful. But doing nothing or not being heard is probably more stressful ultimately. It could feel really good to speak without apology, and say if you people have a problem with our demands, that really is YOUR problem, because we are getting very clear with what would start to help us, and we will continue to make it your problem until we get it.