Nan Cyclist quotes Prusiner that the drug pipeline for PD is "virtually empty".

Conductor71 writes "It is sobering to hear a scientist so key to unlocking the mystery of brain disorders basically acknowledge what many patient advocates have felt for some time now."

Peggy writes "I am ready to try another way of playing this game. Any suggestions?? Remember, the players are the same. It's just the rules that must change."

Tupelo3 writes "We, collectively, have the ability to decide what research goes forward and what doesn't, because, no matter how much money is raised and offered in sponsorship, without us as volunteers, nothing goes forward."

There seems to me to be something self-contradictory talking about taking control. If we're ready for it, we should just take it.

Aunt Bean took control by growing fava beans. Not fighting for years for a grant and then to delegate the work to some university research group. Who: will most likely publish a paper we can't read, because it's behind a pay-wall; will recommend further research, which most likely won't be done, because it can't be patented; and, if they do make a breakthrough, rather than make the most of what they've got, will most likely make enough tweaks to get patent protection. It will most likely take years getting regulatory approval, coming too late to be of any use for many of us; and, once they've got a patent and get it to market, will most likely be so expensive that many PwP will be unable to afford it.

I think it important that we are not anti-science and not even anti-big science. Big science will need to continue to do the research that does not lend itself to being done by patients (surgery for DBS, for instance) But much research (symptom measurement, exercise, effect of caffeine, etc.) can be done well by PwP.

As I've said so many times before we don't lose our skills as managers, engineers, chemists, programmers and a myriad of other areas the moment we're diagnosed with PD.

Make a start now: take the side-to-side tap test. Repeat daily. Then when you find that some food or activity is having an effect, good or bad, you'll have an objective measurement of the effect. Share that with us.

http://www.parkinsonsmeasurement.org/PDMeasure/

And, I bet, the act of taking control will itself be therapeutic.

John