Oreilly, who is not a far right fanatic as labeled, but actually quite fair except he does interrupt, introduces vocabulary words at the end of his show. Last night's word was tendentious. I will not tell you but tempt you to look it up or learn it from context. I thought of it after reading rick and marcia. It does not describe them, but rather our national attitude. Unfortunately, it's become acceptable and in many cases used to be unacceptable - like in the days when reporting was not known to be "tendentious".

Everyone has an agenda. People love to call each other "fanatics". When the real fanatics emerge, you'll know it . We saw it on 9/11 and blame it on ourselves. I do think we had fault in it but not the act itself. Our greed and 'moral character" made people hate us badly enough to kill us.
I admit to thinking - we have finally met our punishment for being so greedy and immoral.

So when we read about potential "treatments" and encourage people to participate in trials, if we do it blindly or with little disgression, a life can be ruined because the researchers often have an agenda quite different from curing, and companies do not understand patients or illnesses. We call for results and transparency and there is some improvement. I think the orgs are seeing our value but much of it is for clinical trial recruitment.
They could have us in the palm of their hands if they were genuinely compassionate and acknowledged our own work.

To rick's post I say, "thus the pdpipeline project" ten years ago. thus the book - Peripatetic Pursuit of Parkinson's, about the last ten years of patient emergence into the medical communities. And all the other patient efforts and there are many. I can't name them because i will leave some out. Ten years ago, we began what many are now doing. We didn't focus on recruitiing, we focused on collecting and providing information.

Personally, Marcia j, I don't think anyone without a history with you or for you and/or other patients can be trusted not to be "tendentious."

Competition is productive in companies but not in patient relationships. I was reviewing the article about Spain and how they agressively fought the shortage, together. Your priorities need to be visible, not verbally relayed. The patients are hip to the "sell yourself" version that emerged somewhere as i became older. people who are "selling' anything are coming from an agenda that can be "tendentious".

I believe the man in rick's article because of our experience with GDNF. Looking back, it was one of the defining moments of my life that culminated in opening my eyes to the lengths that industry will go to to keep us and data repressed. The trial I went to in kentucky was like a grisham novel....about 9 attorneys for Amgen and 1 for the patients. The judge greeted one of the Amgen attorneys - they were old buddies. The south?

ok it's a ramble now so i'll quit. i wish i could trust people. i trust those whose priorities are visible and genuine. Those who are honest and are givers, not takers. Few and far between. Many in the pd community tho.

if we all worked on being worthy of each others trust, we'd see a difference. you have to look within.