Hello Rick and others interested in the book project.

I’ve been quietly reading the thread on this project and wanted to offer my help. You may not be aware that a book in a very similar format was published in 2001 – “When Parkinson’s Strikes Early”. I was one of the co-editors, along with Barbara Blake-Krebs, and it was published by Hunter House , a small publisher in California, specializing in health issues.

The book got good reviews, sold close to 5000 copies over the years (our royalties were donated to PD research), and I still get emails from readers – mostly newly diagnosed PWP --about how much the book has helped them. BUT it is sorely in need of updating – especially some of the medical sections. For example, the first patient in the US to receive an experimental DBS tells his story, as do other patient pioneers who volunteered for then ccutting edge clinical trials, that are now common.

Our book was based on postings to the Parkinsn listserv (PIEN), another international online PD discussion group. We selected Emails from the list archives and grouped them by topic to simulate a conversation, and facts on each topic were interspaced between the first-person accounts. Some poetry and a short story were also included. The book focussed on young onset PD and also on the growing use of the Internet for patient support and political activism for Parkinson’s funding – the story of how the listserv was used to help organize advocates to pass the Udall bill is detailed, but such use of the Internet is commonplace today.

A completely new version or a similar book could focus on issues that are more relevant today.

We had about 50 contributors to the project. Most everyone who was asked for permission to include their writing agreed to participate. We also had the support of the List owners.

Barb and I did all of the editing and the additional text. It took us 2 ½ years of work , but it was a labor of love, You can see the table of contents and some sample pages on Amazon to get an idea of the format and topics.

http://www.amazon.com/When-Parkinson...5846810&sr=1-1

So the point to all of this is that if you’d like, and if you could put together a book proposal, I could contact our publisher and see if they would be interested in a new book about Parkinsons that follows a similar format as WPSE. . I am close to 14 years living with PD, and don’t think I’m able to do much writing anymore, but I can offer advice and help based on our experiences with writing the book and finding a publisher.

But WARNING: This will be more work than you can imagine – but definitely worth it when you hold the finished book in your hands – rates up there with giving birth (after a 2 year long labor!).

Barb, who was 10 years older than myself and 10 years further into the disease, unfortunately died of PD complications a few years ago. But she lived to see the book published and received many positive responses and it was a great joy to her. She would continue to want our stories to be told.

Let me know what you think about this.

linda

you are welcome to use anything i have written....am overwhelmed at present time, but will try to be of help in future. madelyn

Going back through and listing only those who have explicitly agreed to use of their posts and those who have offered editorial time:

Posts: Myself, Fiona, Bluedahlia, Lindylanka, Sasha, Girija, bandito1, chicory, olsen, WendyS, RLSmi


Editorial: Myself, Fiona, Lindylanka, jcitron, bluedahlia, bandito1, chicory, LindaH, olsen, RLSmi,

Who else in either category?

You're most welcome to use any of my few posts.

I'm still around, just not posting much.
Please feel free to use any of my posts and include me as a potential editor.
This is a great idea!
Robert

I think this is a great idea. I'd gladly help. Certainly beats sitting around feeling sorry for myself. Parameters would definitely help.
This site and my support group keep me going. Thanks to you one and all.
Cyndy

Going back through and listing only those who have explicitly agreed to use of their posts and those who have offered editorial time:

Posts: Myself, Fiona, Bluedahlia, Lindylanka, Sasha, Girija, bandito1, chicory, olsen, WendyS, RLSmi, Shake 'em up,


Editorial: Myself, Fiona, Lindylanka, jcitron, bluedahlia, bandito1, chicory, LindaH, olsen, RLSmi, Shake 'em up,

Who else in either category?

You can put me down as a potential editor. Thanks.

...so who else is going to belly up to the bar?
You can get off light, just turn over all your griping and moaning over the last few years to us. We make no promises other than to keep things anonymous, but you could be part of something important without doing much more than you have already done.

If you REALLY want to make a difference, there are plenty of seats at the editing table.

We are getting closer to critical mass, but aren't there yet IMHO. We need more of the long time posters to give us permission. If you maintain email contact with any of them, please ask them to stop in.

If you are tired of talking and want to do something, just raise your hand.

While we can be done sooner, wouldn't it be neat to launch the book by handing out CDs at the WPC with a nice poster? I propose that to be our goal. Anybody second the motion?

I'll amend it to say "Send Fiona and Girija to Scotland with it."

I have just a few posts but you're free to use them and I would be willing to help with editing.

I've received much help from your posts, Rick, on the previous forum site. Thank you!