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Abuse of HD Person
The patient with moderate Huntington's disease, like any person suffering from a chronic disease, can become an easy target for abuse. This can be a result of the mental changes that he or she has undergone, the caregivers inability to adapt fast enough, or the fact that the patient with Huntington's disease is an easily identified victim. The abuse can be either way. A caregiver can abuse the patient and the patient can abuse the caregiver and the rest of the family. The section on behavior has information on working with the behavioral changes associated with Huntington's disease.
http://www.kumc.edu/hospital/huntingtons/abuse.html
Behavior-Understanding in Huntington's Disease: A Practical Guide
A practical guide for individuals, families and professionals coping with HD Jane S. Paulsen, PhD, 2000. A must-read for anyone who deals extensively with an HD-affected individual; 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. Dr. Paulsen writes with compassion and sensitivity in dealing with HD issues.
Family Guide-HD Support Information
State by state guide to resources for Huntington's Disease families plus links to other information.
Frequently Asked Questions About HD
The Huntington's Disease Advocacy Center's (HDAC) HD Frequently Asked Questions (FAQ) page. HDAC states that they expect that this will be the most useful page on this site and, in fact, this is why the site was created!
http://www.hdac.org/hdfaq/faq.php
HD-Study Group
See what's going on in clinical trials for Huntington's Disease. The Huntington's Disease Study Group is your group of scientists looking for ways to slow and/or stop the progression of HD!
http://www.huntington-study-group.org
HDA Fact Sheets available for downloading-
The HDA Fact Sheets are available online in PDF format. To download, view and print out the HDA Fact Sheets you will require a copy of Adobe Acrobat Reader on your computer. The Reader is available for free and can be downloaded from the Adobe Web site at www.adobe.com
- All about the Huntington's Disease Association - 43k (UK)
- General Information about Huntington's Disease - 45k
- Predictive Testing for Huntington's Disease - 61k
- Talking to Children about Huntington's Disease - 47k
- Information for Teenagers - 41k
- Eating and Swallowing Difficulties - 104k
- Huntington's Disease and Diet - 120k
- The Importance of Dental Care - 45k
- Communications Skills - 132k
- Behavioural Problems - 61k
- Sexual Problems - 43k
- Huntington's Disease and the Law - 53k
- Huntington's Disease and Driving - 47k
- Advice on Life Assurance, Pensions, Mortgages etc - 61k (UK)
- Seating, Equipment and Adaptations - 63k
- Checklist for Choosing a Care Home - 57k
Huntington's Disease: A Guide for Families
FREE first copy Order this document online from this link to HDSA's website or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16..HDSA, 1996, 21-page booklet. This short booklet offers an overview of HD.
http://www.hdsa.org/edu/edu.pl?orderform#401
Huntington's Disease Adocacy Center
HDAC's goal is threefold: To help family members affected by Huntington's Disease find answers to the many questions that need to be answered. This includes caregivers, those at risk, and those that have tested positive for HD. Stories and articles of information based on personal experiences or professional research by caregivers and professionals who've "been there".
http://www.hdac.org
Huntington's Disease Lighthouse
One of the most extensive collection of information on current scientific findings on HD, the latest in studies being done on HD, help with nuitrition, etc. and includes a message board too!
http://HDLighthouse.org
Huntington's Disease Society of America home page
Find the latest scientific news, publications, chapters, support groups, Centers of Excellence, the Marker on line (a wonderful quarterly newletters from the HDSA). Sign up on line to get the latest information emailed or mailed to you.
http://www.hdsa.org
Juvenile Huntington's Disease
Information, resources, articles and scientific data on JHD collected
by Jean Miller
National Youth Association
This is a DYNAMIC group of young people and young adults living with HD in their daily lives who formed the NYA with the goal to make theirs the LAST generation of HD. Your child (ages 8 to 30) can join the NYA by going to this link and clicking on "More Information" at the top of the page. They also have their own Message Board you can join there too! Young people living with HD have different needs then most of the adults and it's wonderful this organization has been started to help them!
Nutrition and Huntington's Disease: A Guide for Families
FREE 1st Copy Order this document online from this link to HDSA's website or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16. Ann Gaba, MS, RD, EDM, HDSA, 1997, 26 pages. Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing increasing ke and recipes.
http://www.hdsa.org/edu/edu.pl?orderform#401
Physician's Guide To The Management of HD-2nd Edition
Adam Rosenblatt, M.D., Neal G. Ranen, M.D., Martha A. Nance, M.D., and Jane S. Paulsen, Ph.D. HDSA, 1999. Includes in-depth information on: the general principles of treatment, a new section on genetic testing, updated information on medications, and an expanded section on the management of cognitive and behavioral problems. Not only should every doctor caring for your JHD child should have a copy of this important book but you should too. On-line version from the HD Lighthouse
http://hdlighthouse.org/see/pg2/0.htm
Telling the Children HDSA Brochure
FREE 1st Copy Order this document online from this link to HDSA's website or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16. Shirley Dalby, 2 pages. How, why, when to tell children about HD.
http://www.hdsa.org/edu/edu.pl?orderform#401
Telling Young People About HD- Spanish/Espanol
Young People At-Risk
Published by Huntington's Disease Association of Great Britain, Chapter 4 (click on topic)
HD GREETING CARDS
Help CURE HD Greeting Cards
FREE greeting cards for every occassion that also carry the message to "Help CURE Huntington's Disease"........use them often and tell all your family and friends!
http://community.webshots.com/user/jeanemiller1
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