Orange County Chapter
HDSA Publications
The Huntington's Disease Society of America has an extensive library of informative books, magazines and pamphlets available. The Marker magazine, an outstanding source of information, is designed to provide information and opinion and relay items of interest to individuals with Huntington's Disease and their families, health care professionals, interested friends and supporters.
Our informative Family Guide Series offers an overview of key areas. Kindly note that the information provided within is not meant as an indicator for a diagnosis or medical treatment.
NOTE: Articles from The Marker magazine, the Family Guide Series and the Fast Facts about HD pamphlet are the property of the Huntington's Disease Society of America. Reproduction of this information in whole or in part without the express permission of the Huntington's Disease Society of America is strictly forbidden.
(You will need Adobe Acrobat to view these publications.)
(Due to the large size of some of the files, downloading may take a few minutes.)
**Publications marked with an asterick are also available for download.
To download a publication click 'Download'.
To purchase a publication click 'Purchase'.
You may also order a hard copy of these publications by calling 800-345-4372 ext 219. To go directly to the publications store click here.
Click here for a printable version of publications listing/order form.
Physical and Occupational Therapy
Juvenile Huntington's Disease
Personal and Family Issues
Research
DVDs
Others
Foreign Language Publications
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GENERAL INFORMATION
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Fast Facts About HD HDSA, 2010. Presents key information about HD and HDSA.
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Free, limit one per person**
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Huntington's Disease: A Guide for Families HDSA, 2009, 21-page booklet. This short booklet offers an overview of HD.
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Lifting the Veil of Huntington's Disease Recommendations to the field from the Huntington's Disease peer workgroup.
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Download Only
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GENETICS AND GENETIC TESTING |
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Genetic Testing for Huntington's Disease: A Guide for Families HDSA, 2009, 18-page booklet. An introductory guide to genetic testing for HD.
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$2.00 each** |
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Genetic Testing for Huntington's Disease: Its Relevance and Implications. US Huntington's Disease Genetic Testing Group Revised 2003, 27 Pages. Presents the current diagnostic usefulness of genetic testing for HD and discusses the results of surveys that evaluate issues related to testing individuals at risk for this disease. This publication is extremely useful not only to those working in the HD community, but to all professionals who care for patients with adult-onset genetic disorders.
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Huntington's Disease: The Facts By Dr. Oliver Quarrell, Oxford University Press, 2007. Written for a British audience by Dr. Oliver Quarrell, a consultant in Clinical Genetics, this "popular" guide to HD covers a wide range of topics including the genetic basis for HD, the disease's effect upon the brain and body, the psychological effects of HD, genetic counseling and current research directions. Some information may not be applicable in the US (e.g., insurance and legal information).
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$27.50 each Sold Out |
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CAREGIVING
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A Caregiver's Guide to Huntington's Disease WEMOVE 2011, 20 Pages. An easy reference for caregiver's caring for a loved one with Huntington's disease. Includes practical tips and advice.
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A Caregiver's Handbook for Advanced-Stage Huntington's Disease Jim Pollard, 2000, 69 pages. Written by medical professionals for at-home or care-center caregivers, this book addresses the unique circumstances presented by late-stage HD. Practical tips about how to care for an individual with HD cover eating and nutrition, communication, safety, hygiene, cognitive changes, emotional changes, medical issues and much more. Extensive indices provide a variety of medical, social and product resources.
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Long Term Care: A Guide for Families Suzanne Imbriglio, PT, Virginia Goolkasian LSW/MS, Ann Murfitt LICSW. This pamphlet contains information about skilled nursing facilities, addressing special needs of HD patients and how to advocate for your loved one in a Long Term Care Facility.
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$2.00 each**
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CLINICAL CARE
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A Physician's Guide to the Management of Huntington's Disease (3rd Edition) Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies.
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Free click here. |
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PHYSICAL AND OCCUPATIONAL THERAPY
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Physical and Occupational Therapy for Huntington's Disease: A Guide for Families Suzanne Imbriglio, PT, HDSA, 2010. Provides helpful information and resources for people in all stages of HD. Revised and updated in 2010 to include new trends in HD care.
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$2.00 each**
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JUVENILE HUNTINGTON'S DISEASE
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The Juvenile HD Handbook: A Guide for Families and Caregivers -- 2nd Edition Martha Nance, MD, 2007. This book provides readers with information about Juvenile HD, including genetic testing, when it is appropriate to perform the test, how to understand your HD affected child, and what to do if you find yourself in compromising situations as well as where to turn for help.
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$7.00 each** |
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Juvenile HD: A Guide for Families Edited by Martha Nance, MD, Randi Jones PhD, Suzanne Imbriglio PT & Betsy Gettig MS/CGC. This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal & social issues and more.
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$2.00 each** |
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The Juvenile Onset HD Resource Directory Comprehensive resource guide for families of children affected by Juvenile Onset HD. Information about federal, state and local programs.
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$10.00 each |
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BEHAVIOR
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Understanding Behavior in Huntington's Disease: A practical guide for individuals, families and professionals coping with HD Jane S. Paulsen, PhD, 2000, 46 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, Dr. Paulsen is able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability. |
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NUTRITION AND SWALLOWING
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Coping with Speech and Swallowing Difficulties in Huntington's Disease: A Guide for Families Lynn Rhoades, MS, CCC-SLP, HDSA 1998, 26-page booklet.
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Nutrition and Huntington's Disease: A Guide for Families Ann Gaba, MS, RD, EDM, HDSA, 2010, 26-pages. Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing calorie intake and recipes. Revised and updated in 2010.
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PERSONAL AND FAMILY ISSUES
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Living at Risk for Huntington's Disease: Walking the Tightrope Randi Jones, PhD, Huntington's Disease Society of America, 1998, 84 pages. An in-depth examination of issues and problems common to people at risk for HD. Offering practical guidance and professional insights, this book includes sections on relationships, coping, predictive testing, resources, planning ahead, and life after a positive test result.
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$8.00 each |
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Is Daddy OK? Janet Howes, ACSW 2004, 24 pages Book is ideal for kids, age 6 through 12 who have a parent, family member or other adult in their life who is affected by HD. Book is intended to serve as tool for parents to read along with children or as a starting point for discussions about how the story relates to their specific experiences. A percentage of the proceeds from this book go to HDSA programs.
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$12.95 each |
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RESEARCH |
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Toward a Cure - Current Issue Highlights recent research advances. |
Free, limit one per person**
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The Marker - Current Issue Highlights recent research advances. |
free, limit one
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Past Editions of Toward a Cure
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Download Only |
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Past Editions of The Marker
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Download Only |
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DVD’S
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Caring DVD Huntington Society of Canada, 1985. 110 Minutes. Discusses four major care topics: 1. How to Deal with Difficult Behavior 2. Mobility 3. Speech and Communication 4. Nutrition and Swallowing
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$20.00 each |
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OTHERS
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Homeward Journey. Poetry of Leslie Foor, 2003, 140 pages Depicts a young writer's life through the art of poetry. Mr. Foor was affected by HD in his mid thirties but he never gave up hope. He continued to write poems until his struggle with the disease ended at the age of 48. Percentage of the proceeds from this book benefit HDSA programs.
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$14.95 each Temp. Out of Stock |
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FOREIGN LANGUAGE PUBLICATIONS
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Huntington: Toda Una Historia, 119 pages, Spanish
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Doenca de Huntington: Nao ihe toca a si...mas toca a todas Portuguese
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Problemas de conducta en la enfermeda de Huntington
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Que es la Enfermedad de Huntington?
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Enfermedad de Huntington: un camino a la Esperanza
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Comunicacion con los Provedores de Salud: Guia para los Cuidadores 18 pages, Spanish
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La Enfermedad de Huntington: Serie de Guias Familiares 18 pages, Spanish Revisado por: Kathleen Shannon, M.D., Centro de Excelencia de la HDSA
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La Prueba Genetica: Serie de Guias Familiares 20 pages, Spanish
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Enfermedad Juvenil de Huntington: Serie de Guias Familiares
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Cuidados a Largo Plazo para la EH: Serie de Guias Familiares 18 pages, Spanish
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La Nutricion y la EH: Serie de Guias Familiares 25 pages, Spanish Revisado por: Ann Gaba EdD, RD, CDN, CDE Editado por: Karen Tarapata & Deb Lovecky, HDSA
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Terapia Fisica y Ocupacional: Serie de Guias Familiares
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Datos Rapidos Sobre la EH
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