All Posts In Literature Corner

The Rules for 50/50 Chances

In her first novel, Rules for 50/50 Chances, author Kate McGovern highlights the challenges of being at risk for Huntington’s disease through Rose, a 17-year-old Bostonian who is navigating the challenges of senior year of high school while managing her mother’s worsening HD symptoms. Her mother, who did not know she was at-risk for HD, […]

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Shortest Way Home by Juliette Fay

The Shortest Way Home is a novel that follows 44-year-old Sean as he returns to the United States after 20 years of serving as a nurse in war-torn and underdeveloped regions within South America and Africa. Upon his return, he discovers the extent to which his family has become dysfunctional. Sean’s family has never been […]

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“Life Interrupted”

Multiple Authors Edited by Sharon McClellan Thomason Published by Help4HD International Published: July 2015 Pages: 364         Life Interrupted is a collection of 12 autobiographical stories written by individuals who have or are impacted by Huntington’s disease (HD). The book was published by Help4HD International, a non-profit dedicated to raising awareness and providing support for […]

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The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease by Alice Wexler

The Woman Who Walked Into the Sea, published in 2008, is a historical account of Huntington’s disease in America. Alice Wexler, author of Mapping Fate and sister to geneticist Nancy Wexler, painstakingly documents the disease in East Hampton, Long Island families from its earliest historical appearance to the present. The book is rich with documents, […]

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Eternal on the Water by Joseph Monninger

In Eternal on the Water Jonathan Cobb meets the love of his life, Mary, while kayaking in backcountry Maine. Their perfect love is shortened by Mary’s illness of Huntington’s disease (HD). Published in 2010, this book is a fictional account of Jonathan and Mary coming to terms with the consequences of HD and the difficult […]

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“The Juvenile HD Handbook: A Guide for Families and Caregivers” by Martha Nance, M.D.

Published: 2007 Length: 88 pages This handbook, written by Dr. Martha Nance and published by the Huntington’s Disease Society of America, is a comprehensive overview of the typical issues faced by caregivers of those at-risk for or with Juvenile Huntington’s disease (JHD). A total of eight chapters, the book goes through the progression of care […]

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“Understanding Behavior in Huntington’s Disease: A Guide for Professionals” by Arik C. Johnson and Jane S. Paulsen

An update to the review of “Understanding Behavior in Huntington’s Disease” by Jane S. Paulsen (1999) Published: 2014 Length: 66 pages This book, written for health care professionals caring for those affected by Huntington’s Disease(HD), is an update on Paulsen’s first book “Understanding Behavior in Huntington’s Disease” published in 1999. A review on the earlier […]

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Inside the O’Briens

  Following her great success with Still Alice and Alzheimer’s disease, neuroscientist and author Lisa Genova attempts to accurately portray the disease experience of a Huntington’s disease (HD) family in her latest novel, Inside the O’Briens. Unlike most media outlets, Genova goes to great lengths to understand the disease, both medically and socially, through interviews […]

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Literature Corner: Table of Contents

Welcome to the Literature Corner! “Life Interrupted” “The Juvenile HD Handbook: A Guide for Families and Caregivers” by Martha Nance, M.D. “Understanding Behavior in Huntington’s Disease: A Guide for Professionals” by Arik C. Johnson and Jane S. Paulsen “Inside the O’Briens” by Lisa Genova “The Troubled Helix: Social and Psychological Implications of the New Human […]

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"The Official Patient’s Sourcebook on Huntington’s Disease: A Revised and Updated Directory for the Internet Age" edited by James N. Parker and Philip M. Parker

Published: 2002 Pages: 206 Summary: “The Official Patient’s Sourcebook on Huntington’s Disease” is a three-pronged guide to learning more about Huntington’s disease. It includes basic information about HD (what it is, how it is inherited, etc.), resources that contain more advanced HD information, and useful appendices with advice on how and where to research specific topics […]

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“Omega-3 Oils: A Practical Guide” by Donald Rudin and Clara Felix

Published: 1996 Length: 216 pages Summary: “Omega-3 Oils” identifies the lack of particular nutrients in the American diet as a cause of many modern chronic diseases. The nutrients Rudin identifies include omega-3 fatty acids, fiber, and specific vitamins, minerals, and antioxidants. According to the author, a shortage of these nutritional basics in processed foods leads […]

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“A Caregiver’s Handbook for Advanced-Stage Huntington’s Disease” by Jim Pollard

Published: 1999 Length: 69 pages Summary: This handbook gives key information for families and nursing home staff that are taking care of patients with late-stage Huntington’s disease. It begins with a description of what HD looks like, particularly in late stages, and then focuses on important issues especially important for these patients. This includes communicating […]

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“The Agile Gene: How Nature Turns on Nurture” by Matt Ridley

Published: 2003 Length: 326 pages Summary: “The Agile Gene” uses the research of twelve major scientists to explore the nature – versus nurture – debate.  This debate centers around whether our genes or our environment has a stronger effect in defining who people are physically and behaviorally, something that is extremely relevant in Huntington’s disease […]

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"Huntington's Disease" edited by Gillian Bates, Peter Harper, and Lesley Jones

Published: 2002 Length: 558 pages Summary: “Huntington’s Disease” is a compilation of descriptions of many kinds of research being done in relation to Huntington’s disease. The book categorizes the sections into clinical aspects, genetics, neurobiology, molecular biology, and therapeutic aspects of HD, as well as having a special section on other polyglutamine diseases. Typical explanations […]

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"Understanding Behavior in Huntington's Disease" by Jane S. Paulsen

Published: 1999 Length: 46 pages Summary: This book breaks down some of the more difficult behavioral issues associated with having Huntington’s disease and suggests several approaches to solving them. After describing how HD affects brain circuitry as the disease progresses, Paulsen connects problems such as apathy, impulse control, and irritability to the neurodegeneration she previously […]

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"Huntington's Disease: The Facts" by Oliver Quarrell

Published: 1999 Length: 139 pages Summary: This book provides a simple and thorough introduction to all aspects of Huntington’s disease. Topics that are discussed include the history of Huntington’s disease discoveries, patient organizations, and scientific research.  The author also covers behavioral, neurological, and physical characteristics, the genetics of HD, and genetic counseling. Quarrell uses straightforward […]

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"The Test" by Jean Barema

Published: 2005 Length: 160 pages Summary:In “The Test: Living in the Shadow of Huntington’s Disease” by Jean Barema, a successful journalist in France, tells the story of his chaotic emotional life before finally getting tested for the Huntington’s disease gene. At age 52, Barema faces the decline of his affected older brother and younger sister […]

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"Mapping Fate" by Alice Wexler

Published: 1995 Length: 321 pages Summary: In “Mapping Fate: A Memoir of Family, Risk, and Genetic Research”, Alice Wexler reflects on her personal and academic experiences with Huntington’s disease. Wexler and her sister, Nancy, watch as their mother slowly deteriorates after her HD diagnosis in her 50s, while they are confronted with their new at-risk statuses. […]

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