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Learning to Live with Huntington's Disease

Learning to Live with Huntington's Disease

One Family's Story

Sandy Sulaiman

Quick Overview

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.
Details Price Qty
Paperback / softback
2007, 9.17in x 6.22in / 233mm x 158mm, 176pp
ISBN: 978-1-84310-487-2
$25.95
Ebook
2007, ePUB, 176pp
ISBN: 978-1-84642-630-8
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$25.95

Description

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.

Reviews

'`It's as readabale as Cosmo and as informative as a textbook. Funny, harrowing and thought-provoking in equal measure, it should be on the reading list of anyone with the slightest interest or involvement in Huntington's Disease.`'
- bionews

'Any counsellor might find themselves working with one or more of the six co-authors of this self-help book: Sandy, a journalist in her mid-40s who has Huntington's disease, her second husband; two sons, aged 25 and 15; her daughter-in-law and sister. Their accounts vividly describe the impact of Huntington's disease and their determination to live as fully as they can. Learning to Live with Huntington's Disease highlights feelings and issues relevant to a wide range of situations, especially where secrecy and denial are involved. As I learnt long ago from a young client in a hospice, even if you are free of the gene, nobody in a family with Huntington's disease escapes the illness.'
- Healthcare Counselling and Psychotherapy Journal, October 2007

'Learning to Live with Huntington's Disease is a moving and informative account of one families experience of the condition. The accounts from all the book's contributors describe the emotional issues that can arise from being diagnosed with or having a loved one diagnosed with Huntington's disease, which provides those without first hand experience of living with the condition, some insight into what it is like. This book is very reader friendly, as it avoids complex terminology, making it well tailored for patients, relatives and healthcare professionals. Whilst the content of the book touches upon the cruel realities of living with Huntington's, some parts are quite optimistic and provide advice on ways of coming to terms with the challenges the condition brings.'
- Linchpin, Derian Children's Hospice

'

Remarkable! These "stories from the heart" are able to penetrate even the thickest of fogs that accumulate during the dark times in life. Profound personal insight is shared in a way that challenges all of us to work through the pain and isolation that accompanies stress to build a life worth living. I recommend this work of hope to everyone... HD families, health care workers, scientists, as well as the parents, siblings, spouses, and friends of all who face a health challenge.

The candid stories offer distinct perspectives on living from many vantage points, be it the person with a terminal illness, the “lucky” survivor, the parent, the spouse, or the child. This family inspires us all to examine our “broken edges” as a means to healing, hope and strength.

The prose depicts the clinical phenotype of Huntington's disease with a candor reminiscent of Oliver Saks' neurological teachings. Key components of the disease such as denial, unawareness, depression, motor unpredictability, the childhood capacity for coping, individual differences in addressing the unknown, and mindfulness are depicted with clarity.

The reader is encouraged to “think outside of the box” when faced with apparent somber consequences. For instance, when forced to give up her independence via her drivers' license, Sandy brilliantly rekindles an old love and develops equine physiotherapy to safely exercise and revisit independence.

I can't thank you all enough for the uplifting read I have had today—my week, and perhaps my year of work in HD, will certainly be better for it.

'
- Jane Paulsen, Professor of Psychiatry, Neurology, Psychology and Neurosciences, The Carver College of Medicine, The University of Iowa

'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