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Dear list members, Back in December 1998, after Michael J. Fox's first announcement, PIEN list members Barbara Blake-Krebs, Linda Herman and Jeanette Fuhr brainstormed about how all of our stories could help raise public awareness about PD in general, and particularly about young onset PD. There had been a blitz of list members like ourselves having their letters-to-the editor published, and others were interviewed on TV and/or radio. This sudden media interest in PD was welcome but fleeting. We originally considered compiling our just-published letters-to-the-editor for broader distribution. As we added the stories of some 70 other PIEN members to ours, the letter grew into the basis for an article, and finally we naively concluded, "Why not a book?" We never expected where this would lead us, but after two-and-a-half years of work, the book, now entitled "When Parkinson's Strikes Early," will be published this August by Hunter House Publishers of Alameda, California. We are donating all royalties to PD research and to projects that help ease the burden and improve the quality of life of PWP. Our goal was also to "tell it like it is" and we hope the book has done so. We encourage everyone to do whatever they can to help educate the public, the politicians, the health care workers, and anyone else about Parkinson's from the perspective of patients and their carepartners. There are countless ways to do so. Hunter House's following publicity flyer explains how we hope our book will put a human face on the disease: ------------------------------------------------------------------ When Parkinson's Strikes Early: Voices, Choices, Resources and Treatment Barbara Blake-Krebs, M.A., & Linda Herman, M.L.S. Hunter House Publishers, August 2001. " Once considered a disease of the elderly, it is now estimated that 15% of all Parkinson's Disease sufferers are diagnosed under the age of 50. In this book, the authors discuss the physical, emotional and social struggles faced by young people with Parkinson's and the roads to self-empowerment that can be found through the support and resources of the PD global community. They explain: --The complex array of PD symptoms and the side effects of medications --The benefits of patients developing a strong knowledge base about their disease --The unique impact early onset PD has on both individuals and society --The political empowerment of the Parkinson's community --Current surgery options-described by patients who have undergone these procedures. The book is also filled with the voices of young onset "Parkies" from around the world, communicating with their cyber-family on the Parkinson Information Exchange Network. Refusing to forget their own true worth or to be forgotten , the multinational cross-section of younger adults in this book is striving to become visible to the rest of society. This book is a step in that process. Two goals of this important book are to advance public awareness and understanding about PD and to increase research funding. The book also includes a listing of resources, grassroots advocacy ideas and a complete index. All royalties from this book will be donated to Parkinson's Disease research." Trade paper $15.95 ISBN 0-89793-340-0 Hardcover $25.95 ISBN 0-89793-340-0 288 pages 5 ½ x 8 ½ --------------------------------------------------------------------- One of the themes of WPSE is the power of community. We'd like to express our gratitude for the assistance and encouragement we received from our communities of families, friends, colleagues, Hunter House staff, Parkinson's organizations, our local support groups - the Parkinson's Association of Greater Kansas City, and the Parkinson's Wellness Group of Western New York - and our cyber support group - the Parkinsn list. We would like to express special thanks to: - Our friend Jeanette Fuhr who encouraged this e-mail collaboration from the start, contributed her words, wisdom, and spirit, and cheered us on whenever we became discouraged. Jeanette also wrote the "Ideas for Advocates" appendix. - Susan Reese, coordinator of the American Parkinson Disease Association Young Onset Information and Referral Center, who wrote a beautiful foreword to the book. - Most of the selections in this book originated on the Parkinsn list. Our heartful appreciation goes the list members who shared their words, thoughts and knowledge with us, and to the Parkinsn list's international team of: - Barbara Patterson of Canada, for creating and nurturing this invaluable resource that has touched so many lives throughout the world; - Simon Coles of the United Kingdom, for volunteering his time and computer expertise to hosting and managing the goldmine of information known as the Parkinsn list archives, as well as a number of other special interest and multilingual PD mailing lists and; - John Cottingham of the U.S., for designing and administering the PIEN Online web pages, with its many "treasures" for those seeking information about the disease, and easy access to the list's current messages. At this time, we would greatly appreciate whatever assistance anyone could offer in contacting potential book reviewers, representatives of health-related professional organizations, and owners of web sites or lists who might include information about the book. Please write to us off list if you can help. If anyone would like to order an advance copy of When Parkinson's Strikes Early, please contact Christina Sverdrup of Hunter House by email at : [log in to unmask] or by phone at 800-266-5592 . They also offer bulk (over 25 copies) discounts to groups who wish to sell the book as a fund raiser. Christina, who said she has a good friend with PD, also handles international sales. In August, the book should also be available in bookstores, on Amazon.com, and other online book sites and, we hope, in LIBRARIES too! Thank you everyone, Linda Herman, dx age 45 in 1995, Amherst, NY [log in to unmask] Barbara Blake-Krebs, dx age 44, 1984, Merriam, Kansas [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn