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.

Fiona,

Are you suggesting that we let our emotions enter the picture? The medical commnity finds patient emotion "unpleasant" and biased. oh dear, a quandry. [stated as dryly [word?]as it gets...lol]

i am only going to say have your facts straight with resources and speak a little louder.

paula

Paula,
thanks, I do realize I need lotsa back-up on the most convincing lingo and scientific ways to put things, EVEN THOUGH I think I basically understand a whole lot of it underneath it all.

But I think as long as they find us pleasant, no one will do a darn thing to help. They're just not going to say, "Wow, those Parkinson's patients are just so sweet, and easy to get along with...maybe we should cut them a break and see what they really need." I don't think so.

Fiona,exactly! /IT is possible to be uncompromising without being confrontational, it is done here all the time, but here we are speaking to the converted, I believe that people here could write the handbook, so to speak that could help create that new paradigm. In everything that we do and say we are battling with an ingrained view of this disease as something that affects the old and helpless - for change to happen that view also needs to change. People were old at 60 not that long ago, in some places still that is still extreme old age. But for most people now that is not old it is middle years, and the expectation is different. I for one am fed up with waiting yet another six months to discuss the things that i need to know with the one person I come in contact with who is supposed to be the expert, and watching the years tick by........ Paula, I know you need that improvement, and you need that help, you have such a strong voice though, Greg, it is just as you say it, these are all powerful writings, and there is nothing wrong with passion. Or politics for that matter. This is not whinging, this is telling it as it is. If it was a dread disease that was affecting children in thousands families and kids would be making sure it was known, and would be able to make things happen. It is this wretched ignorance about PD that hides things, makes people indifferent. And the fact that neuros don't like telling us they don't really know what to do. Fiona, you have got it right, there is a lot that can be done, and Paula, when those things no longer help, then a breakthrough is needed, and vested inerests should be put to shame for their collusion, and for their lack of basic compassion. My son tells me fairly regularly that I should be working on making this visible, that I have the ability, and sometimes I feel shamed that it is so hard to do, that if I don't get really involved I will eventually fade into some nether existence of age and incompetence without having put up a fight. And I know that there are lots of peoople here who have fought for a very long time, and I don't want their efforts to fade, even this year there have been breakthroughs. It is not all stone walls and very short memories. I would love to see a 'book', in whatever form, that asks the right questions of the right people, and gives their answers. A book like that could help redefine what PD is, beyond its medical definition, and enlighten all sorts of things. I knew someone once who worked with very old people, with dementia, she collected words, experiences, and made a book that gets used in end of life care, by professionals, who had not been looking at or listening to what these people were saying, only looking at degrees of infirmity lack of competence. Not looking at the right things.

We do have an opportunity to do this, and are blessed with better tools than any previous generation, videos, skype, voice recorders, internet etc.....................okay,I'm done.

best wishes to all
Lindy

It's all here on this forum. Just a matter of getting the posters' permission to use the posts and putting them in some kind of sequence.

I think a bunch of us converging somewhere and making a lot of noise would catch the media's attention, with interviews to follow.

We can turn out a wonderful work, but if it doesn't get noticed it never existed. How about if we turn out something that only we can write, that just might get noticed, and will be more than a flash in the pan?

There is no shortage of things directed at the newly diagnosed. But it is all by the orgs, docs, Big Pharma, etc. How about if a bunch of old heads like us put out a handbook for the Noobs that told it like it really is. Not a bunch of tripe like "Eat prunes." but things like "Sinemet is addictive." Not "Listen to your Doctor." but "Your Doctor may know less than you do." There's nothing like it and it has media appeal. It's also damned hard to counter.

Then we pass them out in the halls at conferences.

Here's even a starter that I have on my website:
"I write this in the seventeenth year of my "Parkinson's Experience." That's a long time in PD Land. I have earned the right to speak on the matter by simple attrition. I am going to take advantage of that and tell you the things that the other sites and the books and the doctors and the scientists don't.

1) You're screwed. You are trapped in a disease that falls at the junction of at least four scientific disciplines. No one has the Big Picture. So the neuro doesn't understand about the immune system and the gastro doesn't understand about the stress circuit. They don't know the cause. And they sure don't know the Cure.

2) If they find the Cure you probably won't get it. As a patient under treatment, you are worth a huge sum of money each year. With a Cure you are worth a huge sum of money a single year, then you're gone. If you doubt it, google "GDNF" + "Amgen".

3) Someone reassured you that a cure was just around the corner, didn't they? What did they tell you, five years? That's what they tell everyone.

4) Parkinson's will kill you and everyone who cares about you. Day by day. Little by little. Oh, you'll still breath, drool, and pee on yourself, but your life will be over.

Now that you know the truth, go to the next post and read it very carefully."

Do Not Go Gently Into The Night

"It dawns on all of us eventually. The cavalry is not coming and neither is the Cure. At least not in time. There are several reasons but they boil down to a lack of urgency. Science prefers to work slowly and carefully. That takes time. You don't have time. All you have are the days in the hourglass.

Most of us come to this realization late in the progress of the disease. We are exhausted, apathetic, unable to walk, and we don't get invited to conferences. It is too late by then for us to do much.

This is a warning and you best take it very seriously. Don't be a good patient. Start being a pain in the butt and do it now while you are still strong. You stand where the HIV victims stood thirty years ago - outside the convention hall in the rain. They forced their way in and were listened to."

I like this thread a lot, so I don't mean to be argumentative. But with regard to the GDNF press release and ad, we didn't go with the NY Times because a one-day run of a black and white full page ad in the Times runs $142,083. If you are willing to let them run it any day of their choice in a seven-day period (a "stand-by" ad), it's discounted for advocacy groups to $64,000 and change.

Not having anywhere near that kind of money, we sought to leverage our funds by putting the ad where Kevin Shearer and other Amgen employees could read it with their morning Cheerios, and used the press release to tell the rest of the world what it said and where to find it. I tracked the press release through a professional press release service. It made it into several daily papers, but more importantly it was printed in full on over twenty trade web sites for medical and scientific professionals. As I said, it did, IMHO, help keep the GDNF discussion alive among those most interested in the controversy.

As far as the national organizations printing anything remotely like this on their home-pages (or anywhere else for that matter), after hours of discussion and persuasion by the advocates involved in the GDNF effort, only PDF and PAN wrote letters to Amgen supporting the patient position. The other orgs wanted no part of it. They all receive money from Pharma, and they didn't want the cow to stop giving milk. It is euphemistically referred to as "donor sensitivity."

If we are going to get the facts out to the patient, org, research, and pharma communities, we will need to find ways to make very little money go as far as possible. But we have a lot of smart and resourceful people on this forum, and with enough commitment and the application of our creativity, we can do things that might at first glance seem impossible.

Keep the Faith,

Greg Wasson