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