I think it is important that we do something before we lose our energy. I have talked to Fiona and she is on board, so I would like to propose a joint effort that could accomplish a lot with minimum trouble.

We have briefly entertained ideas of communication directed toward various segments of the medical and research communities, the newly diagnosed, the public, the orgs, etc. I propose that we produce a book - its working title "Parkinson's Perceived: A Handbook for Understanding" and its authorship credited to "The Parkinson's Collective." Those are both fluid and will no doubt change, but will do for now.

The goal will be to use our knowledge of PD to educate in our own voice. For the first time, a patient initiated, produced, and promoted communication of the realities of PD. The great part is that we have already written it. Here, in this forum.

My understanding is that we each control the rights to our own posts. In those posts we have said enough to fill a dozen books. So, the first level of participation is open to all of us - simply granting the anonymous use of your words in this effort. No matter how sick you are you can be a part of it if you wish.

The second level is a group of editors, the more the merrier. Their first job will be to take the names of those who have signed on and go back through the archives in search of material. At the same time, by identifying subject areas we would shape the book. Then add a preface, design a cover, and get it out there.

It would be non-profit and probably not generate any money, but if it did, I propose that it be used to seed the second project, whatever it might be.

This is unique enough that it should be possible to get some media exposure and publicize our views, perhaps to a bigger audience than we expect.

So - what do you think? I will be the first to release my postings to the plan as stated. Anyone else?
-Rick