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

Not that I think my contribution to this forum was educational in any way, but feel free to use any of my posts.

IMHO - until we wrest pd from the neuro bread and butter role it plays, there will be no help for us. Remember, they were educated by the drug companies.

I'm not into throwing blood bags but think it will take something dramatic to get attention - we don't have to shoot a neuro but SOMETHING BOLD is required. I'm thinking - WAY OUTSIDE THE BOX!

A book is fine but a movie would be better! THEN the book would be read.

Maybe a video would be a good second project. It will pose more problems - i.e. not every one has a camera, more difficult distribution, etc. The compilation of our past conversations would be simple. Right now, I think we need something doable.

Your first paragraph would be great in the chapter on the relationship with our doctors, BTW

Agree with your idea Rick, and would be more than happy to help.
Also agree that a video is a good longer term project. Struggling a little with a dental cycst, but will think on aabout these great ideas!
Lindy

by all means include it! This board has such a wonderful ability to touch others, expressing our shared sense of pain that is still infused with hope and determination to somehow make things better - When I was first diagnosed, I would sit in my cubicle at work and sign on to this site (well, it was a different one in '04) a dozen times a day just for the support implicit in knowing that others were going through similar difficulties and understood - and yet they kept going and kept seeking answers. I think a book is a great idea!

The thing I love about the idea is that it would be a way to get lots of different voices, ideas, and experiences as the source of information about the PD life - which could be unique, no? So a source book of all kinds of stuff, what's been tried, how people feel, what are the different politics, research to encourage - so many things, but it would represent a multiplicity of viewpoints - plus people's personal stories are always so meaningful.

Ibby, I think this could also lend itself to some highly targeted distribution, and that we could make a very strong action by doing so.

Given a little time a video could be possible, and there is more than one way to skin a cat. Would love to make a viral video, but that would need a GREAT idea. Any suggestions? In the meantime I think that your book idea is fantastic, wholly doable, and would give us all a morale boost. Am happy to volunteer as an editor, and have no problem in any of my posts being used; hope to see more people support this, perhaps there should be a thread especially requesting permission, or something similar.

Lindy

I had really meant for this thread to serve as kind of a "sign up" thread, but maybe we need a more clearly dedicated one. I'm not sure, though, that we have the support needed. I mean, granting permission is about as easy as it gets and the idea hasn't exactly elicited a flood of such yet.

Ok, I sign up as an editor. When the kernels seem to stop popping on the editior sign-up movement, then we can convene and divvy up the project, and define its parameters.