Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
May
21
2013

“The Art of Aging: A Doctor’s Prescription for Well-Being” by Sherwin B Nuland

Published: 2007 Pages: 302 Summary: “The Art of Aging” is a book that describes how to handle aging and death with grace, happiness, and productivity. Nuland first defines what it physically means to age, and then connects that definition to potential choices one could make to ease up some of the physical burdens in late [...]

May
21
2013

“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 [...]

May
21
2013

“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 [...]

May
21
2013

“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 [...]

May
21
2013

“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 [...]

May
21
2013

“Learning to Live with Huntington’s Disease: One Family’s Story” by Sandy Sulaiman

Published: 2007 Length: 176 Pages Summary: “Learning to Live with Huntington’s Disease” is a compilation by journalist Sandy Sulaiman’s family about what it’s like to live with HD in the family. It starts off with a chapter by Sulaiman describing what it was like to discover that she had HD and how the diagnosis changed [...]

Mar
04
2013

“A Physician’s Guide to the Management of Huntington’s Disease”

Published: 1999 Length: 81 pages Summary: This book is a comprehensive guide, issued by the HDSA, to ways in which physicians can help caregivers and families manage patients with Huntington’s disease. It begins with an overview of the disease and the genetics involved with HD, and then proceeds to discuss HD as a movement disorder, [...]

Mar
04
2013

“Gene Hunter: The Story of Neuropsychologist Nancy Wexler” by Adele Glimm

Published: 2005 Length: 118 pages Summary: Written specifically for youths, “Gene Hunter” takes a close look at the childhood experiences of Nancy Wexler and how it impacted her contribution towards the discovery of the Huntington’s disease gene. The book begins with HD basics, including genetics, symptoms, and research, and ties those basics in with Nancy [...]

Mar
04
2013

“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 [...]

Feb
26
2013

“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 [...]