[paula_w]

copied from new book forum
good ideas girija,

to them i am adding these:i can't write longer sentences, have too much to say. so if it sounds bossy i'm sorry. try to focus on the content please.

let's set a deadline for people to sign up to participate directly with Doc John. How about tomorrow? rick's been asking for weeks. sign up tomorrow.

Then we need the entire list from Doc John, but he needs to be pmed for it. We aren't the only thing he does lol. Rick can you get the list after sign up closes? Of course, we aren't going to engrave it in stone that no one else can sign up, but we must get started..

Do we need a mission statement? Can we just dive in and start organizing the outline? Mission statement: write a book about online parkinson's communities or connections and/or progress in online communities since first book by Linda. I liked many of bob's topics, and also like the idea of mapping connections, because that's what this unique community arose from and how it continues to progress - through connections...like dominoes.

Two weeks is too long. Regular readers know about this. IF someone comes along that really wants to contribute, we can be flexible, but i'd like to see this start tomorrow even. We've got the forum. Start now.

Let's write a sticky about the project for general information and for continuing contributors, the need for which we will not be closing for quite some time.

I think we should do both posters and the book. We need core groups for each because multiple posters can be considered. I think the core group for the book should include people who have been here for awhile, but not exclusively old timers. I don't mind being a founding member and will be glad to consult on the book, but would like to focus on the posters first. This will eventually lead to adding them to the book. I would like Rosie, who will be joining, to be on the poster core team because she and I talked for 3 hours tonight about potential topics. She is an informed patient.

Here are potential poster ideas that we discussed for those who may be interested in working on both. These will have deadlines, but are very specific and will have defined tasks. The book will need different people, but we can overlap and all post here.

Parkinson's Research: an analysis and categorization of all research as listed in available databases and by organizations, foundations, NIH, etc. to determine whether they are working primarily on symptoms or neuro protection? This may be extended to other countries if representatives would volunteer globally for their country.

23andMe: an analysis of the effects of patient education and collaboration in the development of and recruitment for the parkinson's genetic analysis study . So far promotion videos and going international have come out of neurotalk. Time for much more to occur. We need global promotion of this study.

Online Forums: Neurotalk and perhaps Braintalk: Similarities discovered among pwp that don't necessarily follow traditional thinking. e.g LDN, curcumin, etc. Rick, how can you not lead this?

So for the book, i lindylanka and sasha come to mind but i don't have the list. i think they should be in the core group for book. any old timers interested? carey - medium timer, peg - need you. any others out there? girija, did you mention stepping back? must you? you are needed but no pressure. linda h will consult and probably get motivated by others' degree of work output and enthusiasm.

ok i am too tired to look up the list, so that is the first order of business IMHO. who is in here? The book should move right along with the posters but may not be finished by wpc.

people will need sponsors to get there. any fundraisers or wealthy contributors? the posters must be presented. this will take hard work by sick people.

what is a poster? scientists have had them at their conferences. they are exactly that - posters, like a large poster you would hang on your wall. They are tacked to display walls and it's like a big science fair. I think patients should make the effort to show something new, even if it doesn't work. It's about discovery and we have time to do the tasks that can be evaluated - any hypotheses? - talking to the globe here.

ok rest of posts will remain in book forum. no lurkers please, if you join, you have to work lol - and regular updates will be posted. limited to patients and caregivers? except docjohn and moderators.

Anne Frobert, i hear you are rewriting your wonderful post in the old forum. i hope you are and appreciate how much work that could be. but it's inspirational. Those in business and doctors don't want to see emotion - it gets in the way. This is too extreme and doesn't work. We need to adjust the expectations to a workable meeting point. The human element will be ignored as long as we are accepting of it.

A colleague pointed somthing out to me. We need to work on the motor symptoms. If they were gone, we'd be fine. Instead we get meds that compound motor symptoms and make us crazy, then we have psychiatric "symptoms". Side effects are being confused with symptoms and called symptoms.

You can make a difference here. Let's start now.

posting to regular forum as information and last call. please remember that i didn't mention other names because i have been at this all night and don't know who was on the editing list. i know vicky has a contribution, but didn't know if she was on the editing list. and others.

second order of business - who wants to work on writing , researching posts and editing, and in the case of the poster work - with researching pd research globally??

tomorrow, monday? the 14th? i hope - deadline to sign up. can't guarantee that everyone will get to write, but need [people to research for writers] - if only a few participate it will go too slowly and possibly die. let's use everybody - assign writers a researcher to help. we move or we fail.

ok i picked myself up and dusted off the gloom and doom. hope others do. it's not easy. these are my suggestions. what are yours?

editing to add: i am not determining who works on what, but responding to girija's suggestions about founding members and selecting core groups. working in pairs could keep all involved, along with editing. these are just suggestions.

best to all,
paula