I searched for the book on-line and below Phil's message is the information I found. Right now a lot of sites indicate this title has not yet been released however will let you order it now and it will ship it to you when it does arrive.
Phil Dourado is a published author and well known speaker himself. You can learn more about him here: www.phildourado.com. You can click on the link to "Learning to Live with Huntington's Disease" to preview of the chapters in the book!
PS - I asked Phil, on the HDAC forum, to tell us how they know Richard Branson [Virgin Airlines fame] to get him to review this book!
Announcement: New book 'Learning To Live With Huntington's Disease'
Date: May 06, 2007
We have just had published what we think is the first family book on living with HD. It's called Learning To Live With Huntington's Disease: One Family's Story, and is available through
www.Amazon.com from May 15 2007. My wife, Sandy Sulaiman, who has HD, is the lead author of the book. Each of our immediate family members - myself, our two sons, Sandy's sister who doesn't have the gene, my son's wife - contributed a chapter giving that particular perspective on how they/we came to terms with the illness after a few years in which it blew us away and broke us.
"The world breaks everyone," wrote Hemingway. "And afterward, some are strong at the broken places." At the moment we think we have reached that stage. It may not last forever, but we have reinvented ourselves and found strength we did not think we had. We are no longer as terrified as we were. We face HD together and live as positively as we can. We hope this book is of use to any family going through the same journey we have gone through. If you are in the middle of the storm that we think the first five years or so brings, we hope this shows you can find your way through to calmer waters and live positively.
Best wishes.
Phil Dourado
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'Learning To Live With Huntington's Disease'
List Price is $19.95
Jessica Kingsley Publishers $19.95 or £12.99 [best cover picture]
Amazon was $23.01 on sale for $13.57
http://snipurl.com/1jmmnWalmart shows it out of stock but priced at $13.03
http://snipurl.com/1jmm4
'This is a moving true story of how people can find the inner strength to rise above it when their world is turned upside down.'
- Richard Branson
About the book:
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Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. Learning to Live with Huntington's Disease is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD.
This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of HD, including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent tendencies. The family recounts the challenge to remain united and describes how they approached issues such as whether or not to be tested for HD, how much information to disclose to relatives, whether to have children or not and guilt if one sibling inherits the illness and one does not.
Both honest and positive, the author stresses the importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour.
Author: Sulaiman, Sandy
Publisher: Jessica Kingsley Pub
Publish Date: Apr 2007
ISBN-13: 9781843104872
ISBN-10: 1843104873
Paperback 192 pages
Shipping Weight: 9.1 ounces | |
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