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Support > Helpful Resources

Resources for People
Living With Huntington's Disease

Your Huntington's Disease journey will deal with most of the emotions and challenges known to mankind. You WILL have a LOT of questions, a lot of frustration and some joys along with the heartaches on this journey! There are many resources that can help and the following pages will guide you to them. Specific links are not always included, as they have a tendency to change. Bottom line is whether you have just heard the words "Huntington's Disease" for the first time, or have lived with HD your entire life, please know that you are never alone.

There are many more HD resources that are also available on the Internet which can be found by doing a search for "Huntington's Disease", "Huntington's Chorea", or just "Huntington's." However, many may contain erroneous or outdated information and some may not be suitable for young people. The below are a few of the more frequently visited websites with information and resources on HD.


Huntington’s Disease Society of America
www.hdsa.org    Click on “Get Help/Info/Learn” at the top of the homepage to find Publications available for download, HDSA Chapters, support groups and more.

Some "must have" publications for HD
Download these at hdsa.org under Get Help/Publications/Download or call HDSA 1-800-345-4372 extension 19.
  • Fast Facts about HD
  • Understanding Behavior in Huntington's Disease by Dr. Jane Paulson
  • Physician's Guide to the Management of Huntington's Disease
  • Facing Huntington's Disease A Guide for Families found on Jean Miller’s HD Links under “HD Specific Handbooks”.
  • The Juvenile Huntington's Disease Handbook-A Guide for Physicians, Neurologists and Other Professionals

HD Basics
  • Fast Facts about HD from www.hdsa.org
  • Standford University’s HOPES www.stanford.edu/group/hopes
    learn HD basics, glossary plus has some excellent information for kids and young people.
  • www.nih.gov   National Institute of Health - type in Huntington’s Disease in the search area on top of the page.
  • http://hdroster.iu.edu/AboutTheRoster
  • Brain Basics of Huntington's Disease Indiana and Brain and DNA Bank Information
  • www.ninds.nih.gov   [NINDS}National Institute of Neurological Disorders click on “H” then “Huntington’s Disease National Organization for Rare Disorders

HD Lighthouse
http://hdlighthouse.org/ good HD search engine. People newly diagnoses click on “Beginners”

HD Links
http://get-me.to/hdlinks
Jean Miller’s website. Jean lost her only child, Kelly, to Juvenile HD. She is lovingly referred to as the "link lady" because she has dedicated most of her life since taking early retirement in 1999 trying to find helpful resources for HD families. Best viewed with Internet Explorer.

www.hda.org.uk  HD Association UK

http://hdfoundation.org

www.huntington-study-group.org   a non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia dedicated to clinical research of Huntington's disease.

www.huntingtonproject.org   brings together clinical and basic scientists, individuals and families affected by Huntington’s disease (HD), advocacy groups, and all others in the HD community to find and develop treatments that make a difference in the lives of those affected by HD.

http://hddrugworks.org   The primary objective of the "Huntington’s Disease Drug Works Individual Therapeutic Trials" (ITT) is to facilitate a medically supervised and personal best treatment plan for the person with Huntington's disease.

www.rarediseases.org/   click on “Index of Rare Diseases” then type in Huntington’s Disease

www.wemove.org   one of the internet’s most comprehensive resource for movement disorder information.  Click on“Huntington’s Disease”

www.hdac.org   HD Advocacy Center founded and maintained by HD families members. Good FAQS page.


www.hdsa-wi.org  Wisconsin HD Family Resources

www.huntington-assoc.com/   International HD Association to locate HD associations in other countries





Caregivers

Download the following publications at www.hdsa.org under Get Help/Publications/Download or call HDSA 1-800-345-4372 extension 19 and/or Jean Miller's HD Links under "HD Specific Handbooks".

A Caregiver's Handbook for Advanced-Stage Huntington's Disease by Jim Pollard [HDSA] Access the valuable information covering important subjects such as Communication, Eating & Nutrition, Preventing Swallowing Problems, Preventing Falls, Personal Care, Cognitive Changes, Understanding Changes in mood,Smoking, Medical Issues and Caring for the Caregiver.

Caring for People with Huntington's Disease by Dr. Richard Dubinsky [HDSA} Genetics, behavior, abuse, family dyamic alterations, disablity issues, communication strategies, eating & swallowing, home safety, sleeping arrangement, tube feeding, study groups and more.

CNA's First Shift With A Huntington's Disease Patient by Jim Pollard- excellent brochure providing an overview on an HD patient for Certified Nursing Assistants (CNA's) which can also be used to provide temporary caregivers at home, at day care centers, etc Jean Miller's HD Links under "HD Specific Handbooks".

Facing Huntington's Disease; A Guide for Families This valuable resource, originally offered by the Huntington's Disease Association in 1984 still offers some of the BEST information for families living with HD.

Family Care Forums HDSA www.hdsa.org go to "Get Help/Info/Learn". This Forum provides a comprehensive overview of the importance of good care as a person with HD progresses from early to middle to late stage.

Nursing Care in Late State HD - by Joanne Hunt, RN covers approaches to care in HD, personal & physical care needs, safety, mobility and seating, swallowing & nutrition, dental care, toileting and dressing tips. Jean Miller's HD Links, HD Specific Handbooks

Huntington's Disease - A Caregivers Guide from Caregiver.Com magazine: http://www.caregiver.com/articles/print/huntingtons_caregivers_guide.htm

Lifting The Veil of Huntington's Disease Recommendations to the Field on Palliative Care in HD From the Promoting Excellence Huntington's Disease Peer Workgroup Care Subcommittee Report recommendations. http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3690

HD Caregivers CD a compilation of articles and resources on HD offered by Jean Miller http://huntingtondisease.tripod.com/hdsf-buy-me
www.slayingthehddragon.com Online collection of poetry, memorials.


Children/Young Adults

Genetics

Insurance
  • Consumer's Guide to Getting and Keeping Health Insurance
  • www.healthinsuranceinfo.net
  • Health Insurance Laws and Information Indiana Health Insurance Premium Payment Program (HIPP) Indiana Indiana Drug Assistance Programs Indiana Comprehensive Health Insurance (ICHIA) Information on COBRA Insurance Indiana
  • Insurance and Benefits - two resources from HD Links under "Jean Miller's Other HD websites"


Juvenile HD
  • Juvenile Huntington's Disease HDSA "Get Help/Info/Learn" to "Publications for Download"
  • Juvenile Huntington's Disease Handbook: A Guide for Physicians, Neurologists and Other Professionals 2001 can be ordered from hdsa.org on-line. It is also available electronically under Jean Miller's HD Links, HD Specific Handbooks
  • Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD, booklet and CD available free to any JHD parent or school from HDSA 1-800-345-4372 Extension 19.
  • Juvenile HD website/resources HD Links under "Jean Miller's Other HD websites"
  • On-Line JHD Support Group: A Yahoo group for all parents or family members living with JHD. Go to http://health.groups.yahoo.com/group/JHDCargivers/ to request permission to join this group.


Legal
  • HD Advocacy HD FAQS http://www.hdac.org/
  • Huntington's disease and the law - www.hda.org.uk
  • Information on life assurance, pensions, mortgages etc - www.hda.org.uk


Newsletters/Publicaitons
  • The Marker -- Published quarterly by HDSA. Go to "Get Help/Info/Learn" for back copies of the Marker or sign up for email updates from HDSA [see left-hand column of their website
  • Press Releases on HD Research from HDSA go to "News" to "Press Releases"
  • HDSA eNewsletter - a monthly electronic newsletter published by HDSA. Send an email to mperez@hdsa.org to be placed on their mailing list.

On line Suuport Groups

Research News
  • HDSA's website Research Updates go to "News" to "Research"
  • HD Coalition for the Cure - HDSA to "research/grants/fellows"
  • PubMed - http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed type in Huntington's Disease for latest abstracts of research done on HD.
  • Science Daily - http://www.sciencedaily.com/ type in Huntington's Disease


Social Security and Benefits
  • Medicare http://www.medicare.gov/
  • Social Security http://www.ssa.gov/
  • Social Security - help in filling out form - search for Phil Hardt on the hdlighthouse.org
  • Applying For Government Benefits from HD Links under "Jean Miller's Other HD websites"
  • Government Benefits - http://www.govbenefits.gov/govbenefits_en.portal find out what benefits you might be available for.


Symptom and Stages of HD

Listed are the sites and the info you will find on each site

Jean Miller link: http://huntingtonsdiseasejm.tripod.com/hdsymptoms/id3.html
  • Advanced Stages of Huntington's Disease Handbook
Jean Miller's Other Websites
  • Activities of Daily Living - "ADL's"
  • Communications skills
  • Feeding Tube
  • Helpful Forms
  • Speech and Swallowing Difficulties Stage of HD - a compliation of the Stages of HD
  • Swallowing


www.hda.org.uk HD- United Kingdom
  • Behavioral problems
  • Checklist for choosing a care home
  • Communications skills
  • Dental care - The importance of
  • Eating and swallowing difficulties
  • Huntington's disease and diet
  • Huntington's disease and driving
  • Seating, equipment and adaptations
  • Sexual problems


www.hdsa.org
  • Long Term Care
  • Nutrition
  • Physical Therapy and Occupational Therapy


Videos
  • The Basics of Huntington's Disease - A Video Introduction to the basics of Huntington's disease. Source: HOPES: Huntington's Outreach Project for Education, at Stanford URL: http://www.stanford.edu/group/hopes/basics/basichd/a3_vid.html
  • HD - Their Helping Hands - A video depicting the choretic movements of those with HD [warning: this one might make you cry]. URL: http://media.putfile.com/Huntingtons-Disease-Helping-Hands
  • "Huntington's Dance" Chris Furbee's two interviews, one with CBS and one with Comcast on his mother and which be viewed from Chris's website. This is a young man who was diagnosed HD positive dedicating his life to HD awareness and advocacy. http://www.huntingtonsdance.org/media.html
  • Living with Huntington's Disease - Explores the impact of HD on individuals, families and society. It requires Apple Quicktime software, which I don't have so I don't know if it's worth sharing not!! URL: http://www.livingwithhd.com/lwhd/HD.html

Videos available from the HD Wisconsin Chapter Headquarters Contact Jean Morack at the Wisconsin Chapter. In Milwaukee 414-257-9499 or state-wide Toll free 877-330-2699
  • Huntington's Disease: Living with Knowldege- br Dr. Jane Paulson
  • 20 Tips from 20 years of Living with HD by Clarence and Winnie Voes
  • Communications Strategies for People with HD by HDS - Canada Society
  • Nancy's Birthday - You're Not Sick, You've Only Got HD
  • Living Positively with HD by Phil Hardt
  • Claudia's Challenge
  • Making This the Last Generation - HDSA promo - shows good examples of HD stories - good for public relations
  • DVD - Grit and Grace of Caregiving

Books: HD Fiction and Non-Fiction

These books and other books on HD may be reserved for you through your local library's web catalog. Search your library's catalog for the availability of these materials. Your local librarian may make reserves for books out of your library system, on BadgerCat which searches all Wisconsin libraries or WorldCat, contact them for more details.You will need to login to BadgerCat with your local library ID and password. When you find the book, send the information to your local library. Another choice would be Amazon, www.Amazon.com or by doing a search for the book by title and/or the author on the Internet

Could I have this dance? by Harry Kraus, MD. -
In this inspirational medical thriller, Dr. Claire McCall discovers a dark secret past [HD] when she attempts to research her family's medical history.

For The Rest of My Life by Harry Kraus, MD. This sequel to Could I have this dance?" finds Dr. Claire McCall undergoing genetic testing to see if she is vulnerable to HD, which has stricken her father.

Double Helix by Nancy F. Werlin - Eighteen-year-old Eli discovers a shocking secret about his life and his family while working for a Nobel Prize-winning scientist whose specialty is genetic engineering.

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

Mapping Fate: A Memoior of Family, Risk and Genetic Research by Alice Wexler - Dr. Wexler tells two stories, the one of her familys emotional odyssey after her mother was diagnosed with Huntington's disease, and the relentless efforts to find the gene and a cure, and the news that she had a 50/50 chance of getting it also. This book comes from her unique position of being both reporter of how scientists sought a cure and someone who could be saved by it.

Huntington's Disease-The Facts by Oliver Quarrell

Devil's dance by Karlen, Richard R.

The Test: Living in the Shadow of Huntington's Disease 2005 by Jean Barema

On-Line Interview Outlook: Huntington's Disease the NY Times interviews HD specialist Dr. Martha Nance and families living with HD http://www.washingtonpost.com/wpdyn/content/discussion/2005/09/23/DI2005092300953.html
Red the Rose, Sharp the Thorn co-authored by Elton & Lorene Archer, both deceased however used copies of this heart-warming book are still available on the Internet.

The Wrong Way Home by Liza Fosburgh Having been left to help her mother adjust to HD when her father deserted them, 15 year-old Bent now resists his efforts to have her mother put in a nursing home for the final stage of the disease.

Don't Slam The Door 2006 by Sarah Chamberlin Scott - All summer long at their grandfather's cabin, five sisters must listen to Grandpa's cranky reminders about slamming the door, until eventually the girls come up with an inventive solution to the problem. Includes information about HD

Saving Jasey by Diane Tullson - Eighth-grader Gavin's life is full of drama. His dad abuses him, and his older brother, Blake, is a bully. Best friend Trist's father committed suicide, and Trist's sister, Jasey, whom Gavin is infatuated with, dates Blake. Throw in a few cases of terminal illness [HD] and a near-fatal shooting rampage, and this novel covers most of today's burning teenage concerns.

Tina's Chance by Alison Leonard - Fifteen-year-old Tina discovers that her mother died of Huntington's chorea, a disease which she has a fifty-fifty chance of inheriting.

HD and Me: A Guide For Young People written by Alison Gray - wonderful book filled with quotes, poems and stories from those whose ages range from 8 to 22. An excellent book for all young people who live in a family where someone has HD.

Carmen Leal has several books and CD's available. Most of these are available through Carmen's website: www.carmenleal.com
  • Portraits of Huntington's is a joyful collection of profiles, essays, and quotes for and about those with living with Huntington's Disease.
  • The Twenty Third Psalm for Caregivers although not HD specific it offers stories of comfort and inspiration to all caregivers.
  • Faces of Huntington's is no longer in print. Used copies can sometime be found on Amazon. The "Faces of Huntington's" CD, however, does with music what the book continues to do with essays and stories of those living with HD.
  • Portraits

Care.com’s Senior Care Directory.Care.com is the premiere source of trustworthy care options for every family member, from elderly parents to children, and even pets.  Our Senior Care Directory provides a comprehensive listing of resources by state in seven categories: housing resources, transportation resources, home care, end-of-life care, legal resources, and financial planning and management.

In addition to the Senior Care Directory, Care.com also provides access to caregiver listings as well as articles and advice for seniors, their families, and their caregivers.

If there is anything you would like to add, please email me.