I believe what Fiona is saying and experiencing because I know of no one - NO ONE - who says they think they are improving on mainstream PD medications alone. Does anyone? They might be maintaining or masking symptoms; feeling better for a while on a sinemet honeymoon - but actually getting better by simply downing a regimen of pills as prescribed for PD for the last 50 years?

I've been reading and thinking about this thread, knowing that what Fiona describes is probably true, and wondering how that squares with my excitement about what I have learned as a patient adviser to MJFF. They are all about fairly mainstream medical research. The new difference is that they, and the scientists they engage, which are the top minds in PD, understand that they don't understand PD. They know they have a lot to learn; they know it is not simple; they know that they have to look under every rock and behind every tree to even try to figure out what is the Hydra-headed beast called Parkinson's. Plus they understand that the answers lie in the patients - as donors of biological specimens and as people with symptoms, emotions, families, and lives.

At the research roundtable in Portland earlier this month, Dr. Penelope Hogarth, who is heading the MJFF biomarker study at Oregon Health Sciences University, said she thought the most important development in Parkinson's research was "an idea," - the idea that the thinking about PD was changing; that we don't know the truth; and that was "revolutionary." Now that science is questioning everywhere, there are more possibilities for answers.

So, in my mind, Fiona's experience lies within the realm of possibility because the borders of our realm are so wide. As she said, a PD diagnosis puts us immediately into a box of limited vision and cramped space. Our horizons disappear. Now, just the very fact that we know that we don't understand, that the answers aren't stuffed in that box with us, that, in fact the box might be mislabeled, is liberating - it busts us out of the restraint and allows us to see the horizon again. Anything is possible.

It really is very exciting.