Learning to Live with Huntington’s Disease: One Family’s Story

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Learning to Live with Huntington’s Disease is one courageous family’s poignant story of coping with the diagnosis, the symptoms and the effects on family life of Huntington’s Disease (HD), an incurable hereditary illness. Sandy and members of her close family speak frankly about coping with the symptoms of a progressive, ultimately terminal, illness as those symptoms emerge; including involuntary movements, depression, clumsiness, weight loss, slurred speech and sometimes violent outbursts. The family describe the challenge of remaining united, and 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 the feelings of guilt experienced by siblings who do not inherit the illness. Both honest and positive, the author stresses the vital importance of re-inventing yourself and your present, prioritising relationships and retaining a sense of humour. Inspiring and supportive, Learning to Live with Huntington’s Disease is essential reading for medical practitioners and researchers, psychologists, occupational therapists and rehabilitation specialists as well as individuals with HD and their families and friends.
About the
Sandy Sulaiman has been a journalist for 20 years, and has written articles for most UK national newspapers, as well as specialist publications and women’s magazines

Publisher ‏ : ‎ Jessica Kingsley Publishers
Publication date ‏ : ‎ April 15, 2007
Language ‏ : ‎ English
Print length ‏ : ‎ 176 pages
ISBN-10 ‏ : ‎ 1849857164
ISBN-13 ‏ : ‎ 978-1849857161
Item Weight ‏ : ‎ 13.6 ounces
Dimensions ‏ : ‎ 6.64 x 0.4 x 10 inches
Best Sellers Rank: #2,035,287 in Books (See Top 100 in Books)
Customer Reviews: 4.2 4.2 out of 5 stars 26 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });

12 reviews for Learning to Live with Huntington’s Disease: One Family’s Story

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  1. TonyO

    Insight into everyone family members perspective when living with HD
    Living at risk for HD can leave you feeling scared and alone. You are put on a roller coaster of emotions from one day to the next. Each family member takes on a different role, which also changes as you get older, test for yourself, or become the care taker. It was refreshing to hear and relate to each members experience in this family. I felt like I was reading about my personal experience growing up with an HD parent. I related to my father taking care of my mother; I was able to pinpoint when my mothers psychological symptoms kicked in, the fear of testing, and the guilt of not carrying the gene when I have siblings that have yet to be tested. This book is a true insight into the lives of those suffering from this genetic disease. Very well written.

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  2. Rebeccap

    HD from a first hand view
    I loved reading this book. My father has HD and I can only guess and assume how he’s really feeling. This has given me a deeper insight into my Dad’s real life circumstances. Thank you so much Sandy.

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  3. JL

    Great source of strength to keep close by!
    I am like Sandy; HD positive except my symptoms have not begun yet. I soaked up every word she wrote. She is funny, real and left me wanting to read more of her writings. The book is written by her and her family. Each person has shared insight into the relationship they have with Sandy and the affects of the (mostly rediculous and unfair) Huntington’s Disease. It contains a wide range of perspective from caregivers’ insight and resources for strength to her at-risk childern speaking frankly about their decision to have genetic testing done (or not). Her HD negative sister shares her experiences as well.Favorites about the book:Her husband speaks about finding “faith” not hope. It reasonated and I will keep this with me.Wish list for the book: Sandy, more Sandy! I wanted to read more of HER writings. (yes Sandy you are GOOD!)I keep this book with me (or close by). When I’m feeling strong I reread some parts. When I’m not so strong and need a lift, I re-read her husbands section on finding faith that everything will be alright.A book written by real people sharing such personal details about their lives.Thank you Sandy and your family!

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  4. Lisa Culp

    i did not really enjoy this book that much. it did not help ,me understand the illiness at all
    i did not like this book, that is why I choose a 2 for it. I would not suggest anyone else buy it either.

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  5. Jean E. Miller

    A book for all involved who live with Huntington’s Disease!
    So many people have written rave reviews to the Sulaiman’s and the publisher on this book, I was surprised not to see any posted under Amazon’s book review!Huntington’s Disease has been so intricately entwined into the fabric of my life since the early 1980’s when my only child, Kelly, was diagnosed with the Juvenile form of this devastating disease. Throughout Kelly’s life, and since her death at age 30 to complications of JHD in 1998, I have been deeply involved in trying to help families living with Huntington’s Disease by providing resources and support where I can. “Learning to Live With Huntington’s Disease: One Family’s Story” is one of the best non-fictional books on HD to be written since Carman Leal’s “Faces of Huntington’s” was published in 1998! Whether you are a professional involved in providing support to HD families, a person diagnosed with HD, a young person growing up in an HD family, a person at-risk for inheriting the disease, a friend or a relative of a family living with HD, or a spouse thrown into the role of a “caregiver” in an HD family, each chapter in this book not only will touch your heart but will provide you with insight on how this disease affects every single aspect of the life of anyone who is living with HD!I highly recommend reading “Learning to Live With Huntington’s Disease: One Family’s Story”!Jean E. MillerHD Patient OutreachHDSA HD CoE at USF~Tampa, FL.HD Links: […]

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  6. Melanie

    Love the book! Love the Family!!!
    This book is one of my favorites. It made me laugh and it made me cry. It is nice to know that your not alone in this scary world of HD. I Would Love to see an update on the whole family.

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  7. Patricia R. Russell

    Four Stars
    Great book. Handles subject with humor.

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  8. J. Nolan

    I borrowed this book from the library and I am going to buy a copy so our families and friends can read it too. This book made me feel stronger as I am newly getting used to looking after someone with Huntington’s Disease. The book is extremely well written and has helped me come to terms with my husband’s diagnosis of HD. It has helped me understand a lot about the disease. A tremendous insightful book about a complex disease. Highly recommended.

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  9. Marlie234

    This book describes all the different ways that Huntington’s Disease affects a family by looking at the disease from the viewpoints of different members of one family. This well written book is direct, descriptive, and maintains a wonderful balance of emotional and factual information.It is interesting to see how the undiagnosed disease affected the family in an earlier generation in a much different way than it appears to be affecting the current generation that is dealing with a the disease having both a diagnosis and a better understanding of the disease. I wish the family well and I admire their outlook on living the days that life gives us to their fullest.

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  10. sharon gorrie

    Having Huntingtons in the family it was very informative. The way that the book was written, by all members of the family gave different points of view.

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  11. RJP

    Came quickly, good read

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  12. Christine McGarry

    For anyone who knows someone with Huntingtons it is a very good book and helps with understanding of this devastating disease

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    Learning to Live with Huntington’s Disease: One Family’s Story
    Learning to Live with Huntington’s Disease: One Family’s Story

    $28.95

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