This is a great project, well suited to the talents and resources available, unlike prior data base projects that need additional resources to do effectively. For example, I am writing proposals to fund development of personal health records However, I hope to start the design of the PD diary before getting funding.

I was a contributor to Linda's book, as a participant on the Univ Toronto PARKINSN listserve, and recently several of us have been encouraging Linda to update her excellent book. As Linda has indicated, the project was more difficult than imagined initially, with many revisions, not unlike any writing project. But it was well worth the effort and something to be proud of, and ]n my opinion, It provides a window on the world of PWP that only we can provide. I do not think I need to be on the central writing group, (you seem to have a talented group assembled. i will offer my posts on this forum which are few and the previous Brain talk forum, where I wrote more.

I will go a step further to offer some of my emails to address the topics that I have the most contact with, most likely the issues relating to the application of web technology to political action, and advocacy generally that have germinated in ths forum (including braintalk). My friend who is dean of information sciences at the Univ of Maryland has written about on-line communities as an academic subject. WE have been doing just that, creation of online communities, with no prior experience. I would think no matter what positive or negative influences that the Pipeliners have had, it was a result of this forum, that this group existed and continues to exist. A significant group of the active participants of this list have been official pipeliners, and many continue to be, so for better or worse the ppp is a product of this forum... a subplot of interest that should be told

In sum, an important audieence for this book, in addition to medical people will be sociologists and information scientists, and we should go beyond the posts to fill in gaps as Linda did and tell the whole story.

Perry

Perry, Linda and others have made some good points and there is, indeed, room to expand the project and even to tie it in to their earlier work. The idea appeals to me.

However, it will be a different project than I originally proposed and, in particular, will require more work. It was going to be a strain for me as first presented but we needed a bump on the butt to pull out of the "death spiral" and it was worth the strain.

If we go the expanded route, however, I would prefer to yield my role as "Instigator" to a committee structure of some sort and contribute where I can. It is a good idea, but is there enough energy to pull it off?

Rick asked: "It is a good idea, but is there enough energy to pull it off?"
Answer: To be completly honest - probably not.

Linda and Ii also discussed this problem. (And she is one who knows better than we would know since she has been through this process.) We talked about someone jusst to put it together - do some editing, and get it into manuscript form. That person could be hired, but we don't have the funds (unless there's a lurker out there with millions willing to commit to this! lol)

I guess it's time to be realistic and admit to our "slowing down." This would carry the theme of online communities, if I am reading it right. And Perry's suggestion to somehow tie it into the electronic medical record is a good one - one that would or should be of interest to a publisher. Can anyone t hink of other possibilities?

Peggy

I have a book that is written about my life including PD. I have e-mailed Dr. John to see if he would allow space on this site for all who which to participate in editing to have it available at their leisure. It is about 250 pages long and I welcome others to add whatever issues they feel are important to them personally. This includes issues that might cancel another person's out, ie. stem cell research. All thoughts of the cause, how research is done, what you would like to see more of, etc are welcome. It helps to have a product you can tear down and rebuild again.

Since there are so many editors and few writers, I hope this helps.

Rick,
Only just read this thread, I have been busy!!!and on holiday.
You are welcome to use any of my ramblings. I think everyone should approve what is assigned to them before it is published. Sometimes people have a bad day, and can be a little confused, or out of sorts and would not want some posts included. Do you plan giving the name of the contributor with the post, or just list the names of the contributors in the Introduction? Or maybe you have not thought that far ahead yet.
I think it will be a massive time consuming job, with so many people involved, but well worth the effort
Good luck
Ron

Rick and others,
Don't give up on this project before you start. It's worth a try.
True some of us are slowing down, but others are more able and if the work is divided up in small doable tasks, a cooperative effort just might work.

Also -- it doesn't have to be a book -- a web site, posters, videos etc. could be used instead to tell our stories. Maybe some people would want to write an article about a specific topic --like onlline communities. There are other options besides a traditionally published book and lots of talents among the forum members

Please think about it some more.

Don't misunderstand. I'm all for the project in any form and I have thought about it. It is just that I don't have the time to do it justice.

Of more concern to me, however, is the question of whether or not the group as a whole has the energy to take this on as an initial project. It is one thing to go through the archives selecting from existing material and putting together an attractive PDF file for multiple use. But quite another to incorporate video, original material,publishers, etc. That is easily an increase of ten-fold if done right.

Perhaps it could be done in such a way that the ability to expand by adding modules could be designed in from the start. Standardized design elements such as logos would be a start. Get this first module out the door as a morale booster.

Rick et al:

Following is a listing of what I believe to be important issues that need either clarification, idea expansion, or additional input. To simplify we need comments by those of you who have been chosen, volunteered, recruited, etc. as editors. I am numbering each issue:

1. Title: Let’s start with Rick’s suggestion.”Parkinson’s Perceived”.
2. Format: book, video, Internet, posters.
3. Define the role of the core group.
4. Define the role of the editorial group.
5. Using topics suggested in this thread as a core table of contents, provide additional topics.
6. Who does the archive scanning? How?
7. If a book, do we self publish or not?
8. If the venture is profitable, who or what will be the beneficiary?
9. Should we consider using pipeline data, and possibly some excerpts from other sources such as prior publications?
10. Do we need more posting permissions?

As for help in typesetting, printing, etc., We can make that determination after selecting a format.

As an experiment in data gathering I’m going to suggest that Paula W be recruited one more time in creating a new forum with the core group of posters and editors as detailed by Rick are finalized. As a test we might be able to transfer this document to the new forum?

P.S, I want you all to know I used speech recognition software to compose this piece. I don’t plan on editing it! Bob C

Rick,
This sounds like a great project that has the potential to make an impact on PD world (realized it only after reading Perry's email. Thanks!). I think we should all give it a try/ Several people have already volunteered to edit, Linda's book can be used as a model. I am ready to start and if needed be a "co-pilot' with you/Linda/Perry or whoever is interested.
Like you suggested, we need a core group of people 5-6 to decide on topics and assign the job of pulling out posts and getting permissions and putting them together.
I am volunteering my services for whatever the job may be.

Lets get started and hope this project takes a life of its own!!

Some of the action items to initiate this project.

Any volunteers for the core group? It would be great to have atleast a few senior members of this forum and those who already participated in Linda's book.

Linda, you may have already posted it, sorry I havenot looked back into the posts, where can I get a copy of this book?

What are the topics that are of interest? we have one message on this subject, please add to that.

Do you have a favorite topic you like to search and pull out posts and get permissions?

Any voluteers for writing introductions, comments/summaries for each chapter?

I am really excited about this project, and here is how I see it

My idea is to make this book a living testimonial of PD from our perspective and sort of like the photobooks "A day in the life of ", not just a day, but years! It will be a mirror of our passions, frustrations, joys, compassion, friendships, relationships gained and lost, life style changes, identities gained/lost and most of all how we are trying to make the best out of a situation none of us bargained for. Of course, all these points from the care givers' point of view too. Evrything comes from the posts and may be some intro to the topics. If people are uncomfortable with names being used, we can stick to initials. Threads where we had heated debates on different topics (edited of course!) would be great additions!!

Thanks
Girija

Girija,
Your enthusiasm is inspiring!
Our book is available on Amazon. Sorry, i don't have any extra copies or i would have sent you one.
I'll help where I can, but I'm one of those who has been slowing down after 14 years with PD, and can't work or write the way I used to. I want to be realistic and honest about what I can do.
I also suggested that even if the format is similar, this new book should tell its own story, reflecting the lives and interests of Neurotalk Forum members.... not be just a revision of our earlier book. Although reading thru it may give you some ideas
linda