I have been wanting to start a thread at very least, but more a blog to tell the world how it really is, yet I am afraid of people thinking I am either on a l-dopa fueled hypomanic rant or that I am some crazy person in denial. Truth is PWP who are newly diagnosed do not want to hear the truth. This is in fact the only PD based grounded in reality We talk of awareness but we bypass the fact that many of our peers; most in fact, put all their faith in a cure when the reality is we are still being sold snake oil, only it is the peddler is now the establishment; those very people who are supposed to have our own best interest at heart; well guess again. Our reality is that we are most likely screwed unless we band together and start squeaking our wheel- they put us on the wheel and we keep it in motion. No offense, I am not being judgmental because I am just as culpable in this, but I think it needs to be said. We spend way too much time here preaching to the choir. How do we expect anything to ever change for us?

Yes, things move at a snails' pace, but it has very little to do with keeping us safe. Look at all the recalled drugs. No one ever talks about the cover ups by pharma and the FDA- this happens across the board, not just with neuro disease. The FDA regularly colludes with pharma or whoever will keep the power structure in place and money flowing. Science, medicine, and pharma take forever to make progress because they are a system run by our chronic illness; it is not an intentional thing or conspiracy to profit; it just is because it evolved into that and because somewhere along the way (in schooling, I imagine, scientists learned not to take risks) doctors and scientists lost sight that there are real live people waiting on that pipeline.

Scientists make major breakthroughs only when they take risks. The peer review system insists on conformity, so just who is going to be our Atticus Finn, our moral hero, someone who has clout, to stand up for us? These people. once a rarity, scarcely exist today. If we don't start speaking up; not only will we not see anything change, but I would say we will regress unless we step up now. We have already lost control of our health, and the people involved in research, drug approval, medical care etc. all the many players in the game called race for a cure that probably already exists, those people now control our lives, we are merely pawn

Paula is absolutely right. We do not need new research. In fact, as much as I believe in what MJF is doing for us, it is misguided. We need panels of experts there; meta experts, or wherever taking on different theories and identifying say the top three promising treatment options beyond dopa replacement and then seeing it all the way through. It is entirely too passive an approach. People with MS have done this. A wealthy guy came down with MS and researched along with experts the best options for treatment right now for people who already have a diagnosis. What continues to hold us back?? We have plenty of company; PD does not select on basis of income. Why can't we make a case for a think tank for PD that is wiling to take risks? Sergey Brin has started a foundation with his wife; why can't we redirect our energy there and make a case?

To those who scoff at the idea of civil disobedience; I am not suggesting we need to be as in the face of the establishment like Start Up was for AIDs; though they made more strides for that cause than we have seen change in 50 odd years of research, I am saying we could be far more assertive. Many of us shy away, afraid that we will not be taken seriously because we are not medically trained. Somehow because we do not have medical degrees we are less equipped to discuss the scientific literature or question our doctors or we cannot even hint that others should try curcumin. We too are experts; we live with PD, yet we let everyone else define our collective fate.