Rick et al: First thanks to you & the administrators for the jump start. If we can extend you one more time please work with Doc John, Paula & ?? in setting up a restricted list of those who can access , i.e. core members, editors and the as yet mystery volunteer who will lead this effort. I agree with those who are apprehensive about the size/scope/participation in this project. On the other hand, I think it is an excellent beginning to defining a meaningful action plan designed to educate, inform and advocate. The patients voice will be synthesized in this effort and can then be utilized in any way the group sees as appropriate. If nothing else is accomplished we will have gathered the best posts, observations, fresh material,etc. from the cream of the NeuroTalk PWP'ers. Next step = set up the "Parkinsons Perceived Project" and name those who volunteered thus far. as restricted users. Bob C

I would hope more people might give permission for their posts to be included in some fashion - everyone's experience is unique and valuable.

I think you should not wait for people to give blanket permissions - you'll wait forever. You should comb all of the posts for the ones you want to use, and then go to the poster and request specific permission.

If we - or the leaders - would agree on an appropriate list of topics (flexibility a given here) for this project, those topics could be divided up with a topic per interested "editor" person - who would then search our writings using the "find" function and put something together. At that time, it might become necessary to contact people to ask if a specific post might be quoted from. This should result in a rough draft of a rough draft - at least we would have things somewhat sorted by topic, with no doubt some (only some?) overlap.

Just a thought, not trying to overstep any bounds!

Sasha,
That is exactly what I had in my mind too! Topics are the tough ones to decide!!
Thanks
Girija

it would be good if chapter by chapter progression could be developed initially, does not need to be fixed firmly, but would give an internal/integral logic to the book that will be needed, as well as provide a structure for research, editing, and task related delegation. perhaps a discussion on this needs to take place, it could sort out the wood from the trees

happy to help in any way
lindy

Bear with me I have only a Blackberry for one more day and then back to a regular computer. So I'm asking for the forum to be named as parkinson perceived project.Ok thanksPaula

I think the above suggestions made above by Bob, Sasha, Lindy , Girija (sorry if i left anyone out) for getting organized are very good ones. This might have already been suggested, but if the core group could decide on an overall theme or scope for the book, I think the chapters would easily fall into place. Just try to keep moving forward.

Barb and I had sent out 2 permission letters -- One to initially announce the book project and let the authors kno w we were considering using some of their writings. A sample this initial permission letter is copied below. With it we included the full text of the selections we wanted to use -- in context if possible. Then later on, before the actual publication we sent a formal copyright permission letter with language that the publisher had requested. I can send you a copy of that later on as well.
Permission letter example:

" I am writing on behalf of Barbara Blake-Krebs, and myself, both long-time members of the Parkinson's Information and Exchange Network (PIEN), about our book on Young Onset Parkinson's Disease - "Behind the Masks : Hidden Lives of Young Parkinsonians." You may have seen messages about it on the Parkinson's List last summer. We have been working on it for the last year, and the manuscript is currently being reviewed by an interested publisher as well as top medical people from the PD community.

All royalties from the book will be donated to PD research. This book is our way of helping to "Fund the Research and Find the Cure." The primary focus is on stories of young onset PWP throughout the world, and the impact of the Internet on their battle with Parkinson's. Most of the selections have been found on our Parkinson's List Archives, and some on Web pages.

We are requesting your permission to include some of your postings found in the Archives, which are shown below. Full credit will be given to the author of the posting, and we will not use any material without permission. If you would like these writings included in "Behind the Mask," please send me a reply (offlist), stating your permission. Thanks."

Also about privacy concerns -- there is very little privacy on the web anyway. Anything posted on Neurotalk or other Forums is litrally available for the whole world to read. So most people we asked were very willing to have their postings included, with little worry, and just about everyone oted to have their full name included
linda

This is a first for me--editing my own posts!

Lokks to me like the stage is set. Paula will be cosulting with Doc John and/or other Administrators setting up a new forum with restricted participation by present core/editor volunteeers to be recompiled (soon??) by Rick. Look for the new "Parkinsons Perceived Project" topic when it appears at your next logon.Then try adding in just one of your suggestions for a separate thread e.g.

Introduction
Preface
History
symptoms
diagnosis
treatments
YOPD
Social Relations
PD and the Workplace
the role of science, researchers, pharmas,medical community etc,
Patient participation in the process
the best of the forum posts
misc commentary
PICK UR OWN THREAD

Meanwhike I am getting older 78 in OCT ===TIC TOCK TIC TOCK LOL Bob C

AARGH! Sometimes I have a lot of energy to put towards the PD community - but other times I don't, and it's all I can do to be taking care of myself, or still have some kind of role in other worlds. What to do, what to do? I feel bad because I care about all this a great deal but - ya know, I gave up Mirapex, and its absence gives me a softer focus, if you can imagine what I mean.

No solutions at the present. Just saying I know I said a whole lot and lately nothing, and concerned that I don't have the consistent energy to see this through. More of a response in formation. I haven't left - just need to breathe some....