An extension/combination of some of Rick/Jean/Paula/Carey's ideas:
The village idea is good, but why stop at it being for research, how about centers for wellbeing and research combined, where PwP could go for a kind of respite from their daily living, into a safe environment where there were people who could advise/assist them on everything from medication adjustment, to taking control over their own lives, from emotional crises to mobility. And while they were there collect valuable data and maybe samples, scans, physiological testing etc. over say a 2-week period. Not too medicalised, maybe an hour a day for that side of it but the rest to choose from a menu of things that could help tackle the difficulties faced - taster sessions in exercise, dance, singing, neuropsychology, conductive ed., etc. Confidence building and communal. I am absolutely sure data collected like this would riival much of the assumptions on PD. For instance data could be collected about wearing off and on, how dyskinesias vary, and it could be data collected from people of a wide age range, most of the studies on things like this are done on highly selective groups, or on late onset PwP in care homes. There is so much that is unknown, and a lot of it relates to our daily activities - how many PwP become poorly nourished for instance, because of inability to prepare food from fresh ingredients, what can help with this.
I am coming at this from a basis of living with the reality that PD has fundamentally changed how I live. That is what it does, and most people do not see that or understand it. That includes doctors and researchers too. It is bothersome from the moment I wake until I eventually (
) get to sleep.
I can't think of another disorder that is so pervasive, but there is virtually nothing other than groups like this one that help with understanding how to live well with PD, we are all doing it by trial and error, and waste years finding what works for us best.
So I guess this idea, which I have not really expressed clearly enough, is also idealistic, because everyone in a 'village' like this would be participating not just delivering or receiving, and it would not be a passive place......... a dream - maybe. A possibility, yes, if someone with what it takes would put some faith in it as a way to move forward, and it provided a paradigm that was of benefit.