Adam Rosenblatt, M.D.
Neal G. Ranen, M.D.
Martha A. Nance, M.D.
Jane S. Paulsen, Ph.D
Huntington's Disease Society of America, ©1999
This very informative book is geared toward physicians who are treating patients with Huntington's Disease, but it is written such that it can also be easily understood by the patients' family members and friends. It is a very positive book, as indicated by the following quote from the preface:
It is our hope that, with the aid of this guide, a physician meeting someone with Huntington's disease will not say "You've got HD ... There's nothing you can do about it," but instead will be able to say, "You've got HD, and I can help."
The book is organized around the three general manifestations of Huntington's Disease: The Movement Disorder, The Cognitive Disorder, and the Psychiatric Disorder. In each of those chapters, various symptoms are discussed, and possible medications are suggested, including recommended dosages. Various coping strategies are also suggested. Terms which might be unfamiliar to non-medical people are clearly defined, which makes this book very helpful for family and friends.
The first chapter is an Overview, which gives a good general explanation of what Huntington's Disease is, discusses the various stages of the disease, and talks a little bit about the HD gene. There is also a chapter on Genetics, which explains in more detail the hereditary nature of HD and discusses the huntingtin (IT-15) gene. It includes a good explanation of what the various CAG repeat numbers may mean, with information regarding the correlation between CAG repeat and age of onset and instability of the CAG repeat number. It also discusses diagnostic testing, predictive testing, and prenatal testing.
The final chapter on Other Issues discusses driving, smoking, sleep disorders, incontinence, disability, and end of life issues. Appendix 1 lists voluntary organizations and other sources of help. Appendix 2 lists facilities offering predictive genetic testing for HD. Appendix 3 provides rehabilitative/adaptive equipment and product information. Appendix 4 is a sample rehabilitation survey which may be helpful in assessing a patient's abilities to perform activities of daily living (ADL), either in the home or in a long-term care setting, and also in recommending adaptive equipment where necessary. Appendix 5 is a sample disability letter. There is also a list of references and suggestions for additional reading at the end.
I highly recommend this book for anyone who has a loved one or friend with Huntington's Disease. I would also strongly urge you to have a copy sent to the patient's doctor if the doctor is not an expert in HD. The book can be ordered from:
Huntington's Disease Society of America
158 West 29th Street, 7th Floor
New York, NY 10011-5300
Phone: (212) 242-1968 or (800) 345-HDSA
Fax: (212) 239-3430
Created and maintained by Renette Davis. Send comments to her by clicking here.
Created: Sept. 5, 1999
Last updated: Dec. 4, 2010