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 On Line Resources(click on items in blue) Abuse of HD Person
http://www.kumc.edu/hospital/huntingtons/abuse.html
The patient with moderate Huntington's disease, like any person suffering from a chronic disease, can become an easy target for
abuse. Read more about this on this link.
ADD/AD-HD - See SECTION 18 - ADD/ADHD
discussing ADD, AD-HD, conduct, and resources
Addictions - See SECTION 11- ALCOHOL/DRUGS
covering alcohol and drugs and children/teens.
Advanced Stages Caregivers Handbook
Written by medical professionals for at-home or care-center
caregivers, this book addresses the unique circumstances
presented by late-stage HD. See HD Specific Handbooks
Assistive Technologies
discussing child devices and resources. Also see
At-Risk For HD?
Behavioral and Sexual Problems in Huntington's Disease
$.50 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, from Horizon, No. 64, 1992, Huntington Society of
Canada, 4 pages. This article discusses in everyday language
the kinds of changes in mood and behavior that can be
experienced by people with HD.
http://Symptoms/HD ~ Behavioral and Sexual Problems in Huntington's Disease Behavioural Problems - 61k
PDF format of this document is available at this link from the UK Huntington's Disease Society
Behavior
 Understanding Behavior-Dr.Paulsen
 Provide people living with HD this excellent resource from Dr. Paulsen which addresses the various aspects of behavior in someone with Huntington's Disease. Includes tips on how to help. This is the next "Bible of HD' to the Physician's Guide to The Management of HD. Here are the chapters: Benefits - See Section 21 - BENEFITS/INSURNACE
discussing disability benefits, Medicare, Medicaid, etc.
You can also find more information on Insurance at:
Caregiver's Package
http://www.hdsa.org/edu/edu.pl?orderform#401
$2.00 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.
Includes the following: 1) "Practical Hints for Care Givers HDSA,
1988, 9 pages. Covers eating, swallowing, clothing, cleanliness,
communication, smoking, recreation and attitudes. 2) Nursing Tips:
A Collection of Caregiving Hints 1995, HDSA, 9 pages. A compilation
of professional caregivers' suggestions on feeding, communication,
behavior and other daily concerns. 3) Huntington's Disease Management
6 pages. Dressing aids, relaxation, nutrition, communication, and
physical fitness.
Centers of Excellence
See HD Support Information to locate one near you. For Family Services
CoE's are comprehensive medical centers that bring together multi-
disciplinary teams of professionals who are skilled in assisting families
facing HD. These may include: pediatric neurologistsmovement disorder
specialists; physical, speech, and occupational therapists; psychologists
or psychiatrists; dentists and pediatricians
Communications Skills - 132k
PDF format of this document is available at this link from the UK Huntington's Disease Society
Huntington's disease affects many skills which are necessary for
effective communication. Disturbances of speech production, or
the mechanics of speaking.
Jim Pollard's excellent brochure to help new workers or at home
caregivers learn the basics of helping someone with HD.
Dental-Importance of Dental Care - 45k / HDA UK Fact Sheet #8
Disabilities - See Section 14 - DISABILITY ISSUES
planning and support, legal needs and camps.
Divorce - See Section 13 - DIVORCE covering divorce and
child stress, tips for parents. You may also want to read the
advise on this page Divorce Issues realting to financial info
etc.
Driving -Evaluating Capacity in HD
http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 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..
1994, 11 pages. Practical guidelines to assist physicians and other
professionals in making this difficult determination.
Also, see the Driving Assessment Checklist on this link:
Eating - See
Emotional - See Section 16 - EMOTIONAL ISSUES
discussing self-esteem, behavoir and resources.
Estate Planning/Advance Directives, etc.
Our Final Journey
Purpose: Provide families living with a terminal illness information on Estate Planning, powers of attorney, advance directives, guardianship, conservatorship, avoiding probate, providing for children, etc.. Here are a few of the many informative sections from this site: Facing HD~Family Handbook for Families and Friends
covers topics such as Medical Facts, How HD Is Passed On,
Learning The Diagnosis, Young People At Risk, The Course of the
Illness, Grieving, Hope For The Future
(Dementia) - Family Caregiver Alliance
Fast Facts About Huntington's Disease HDSA website http://www.hdsa.org/edu/fast_facts_brochure.html
Genetic Testing Resources-
Also see Genetic Testing Links
Grief - See Section 17 - GRIEF
Discusses helping a child, resources
Help CURE HD Free Greeting Cards
Purpose: Over 1,000 every day cards for almost any occassion with the message "Help CURE HD" on each. Most popular are "Life", "Excuses" and "Inspirational" cards. These cards a free for any HD fund raising event. You can order the CD with the cards on the Hunt-Dis HD Convention Scholarship website. Home safety in Huntington's Disease
Written by Dr. Richard Dubinsky HD Helpful Forms
Purpose: Documents uploaded in ose: Documents uploaded in Word format to help caregivers in day to day care, family planning, appointments, Caregiver Daily Care planning booklet, HD Information cards for handout, Emergency Information document, medication forms, Personal Health History form, "CNA First Shift" brochure, Driving Assessment Checklist, New Drug Checklist, Social Services Q&A checklist, Asssited Living Q&A checklist, etc. Below are sample documents from this site.
HD Advocacy/Media/Donation Information HD-Stages of HD
Huntington Study Group (HSG)
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!
Also see Clinical Trials & Research
HD Helpful Forms
Purpose: Documents uploaded in ose: Documents uploaded in Word format to help caregivers in day to day care, family planning, appointments, Caregiver Daily Care planning booklet, HD Information cards for handout, Emergency Information document, medication forms, Personal Health History form, "CNA First Shift" brochure, Driving Assessment Checklist, New Drug Checklist, Social Services Q&A checklist, Asssited Living Q&A checklist, etc. Below are sample documents from this site.
Hunt-Dis HD Convention Scholarship 
Purpose: List items;fund raising items to help send HD
families from Hunt-Dis to HDSA's National Huntington's Disease
Convention each year who, due to financial difficulities from
living with HD, would not otherwise be able to attend. Several items can be found here including orginal artwork,
calendars, links to Amazon where the HDSF has an associate
membership to help raise funding, books by Carmen Leal,
the Non-Chew Cookbook, etc. Huntington's Disease
http://www.hdsa.org/edu/HD_booklet.htm
HDSA website brochure to provide to health care people, or anyone seeking info on HD
Huntington's Disease: A Guide for Families
http://www.hdsa.org/edu/edu.pl?orderform#401
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.
Huntington's Disease Advocacy Center (HDAC)
HDAC website (click here) HDAC was started 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. Huntington's Disease and Diet - 120k PDF Format/HD UK
Fact Sheet #7
Huntington's Disease Lighthouse
HDL Website (click here) Jerry Lampson's HD Lighthouse has had over 1 Million visits since it's inception. Among the many things HDL offers is current information on Scientific findings in HD, clinical trials, resourceful documents on Huntington's Disease and a message board. Huntington's Disease Society of America
HDSA
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 l
atest information emailed or mailed to you.
Huntington's - International HD Disease Societies
http://www.huntington-assoc.com/ihaadr.htm
Locate an HD organization in your country Juvenile Huntington's Disease
Section 3 - JHD Also see the Huntington's Disease of Canada's
booklet on JHD. Click here English (in PDF format)
KIDS/YOUNG ADULTS
Purpose: Very moving and touching portrayal of how the devastation of Huntington's Disease affects the lives of our young children and adults living with the disease through a Question and Answer format....plus more!
National Youth Association-Huntington's Disease
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-Benefits of - in HD
HDSA document covering Physical & Occupational Therapy in all
stages of HD. Physician's Guide To HD-2nd Edition
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.
PDF format of this book is available from the Huntington Society of
Canada. Click on English
Procedures - See Section 10 - PROCEDURES explaining CT Scans,
MRI's, Swallowing Tests, test commonly used etc.
Recipes To Help With Swallowing see HDAC's
Sexual Problems in HD- 43k PDF format of this document is available
at this link from the UK Huntington's Disease Society
 speech & swallowing problemsSome basic tips on communication and help with eating from the
South Shore Neurologic Associates
Speech
on HDSA's website in PDF format
Support - See Section 19 - HD SUPPORT GROUPS for information
on HD support groups, chapters and on-line for both adults and
young people
Suicide - See Section 12- SUICIDE information for parents and
teens. Also you can order Suicide and Huntington's Disease
http://www.hdsa.org/edu/edu.pl?orderform#401 $.50 online from this
link to HDSA's website or call 1-800-345-4372 and ask for Anita
Mark-Paul Extension 16. Personal perspectives of three HD family
members, followed by a psychiatrist's thoughts on the subject.
Surgeries - See Section 9 - SURGERIES surgeries for movement
disorders
Symptoms - See Section 4 - SYMPTOM RECOGNITION covering
all emotional related possible symptoms from Anxiety through
Tremors
Talking With Children About HD
Talking to Children about Huntington's Disease - 47k in PDF format from
UK Also see section on this site, click on Talking With Children About HD
Teenagers - Information
Information for Teenagers in PDF format of this document from the
UK Huntington's Disease Society
Telling the Children HDSA Brochure
http://www.hdsa.org/edu/edu.pl?orderform#401
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. 2 pages. How, why, when to tell children about HD.
Telling Young People About HD- Spanish/Espanol
Translated webpage
http://fets3.freetranslation.com:5081/?Language=English%2FSpanish&Url=http%3A%2F%2Fmembers.aol.com%2Fhdanwlancs%2FFsheet4.html&Sequence=core Therapies - See SECTION 7 - THERAPIES covering Behavior,
Speech/Language, Physical, Occupational and physiotherapy and
Therapy-Mid-Stage Huntington's Disease
http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 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.
Suzanne Imbriglio, PT, Clinical Management, Vol. 12 No. 5,
Sep/Oct 1992, American Physical Therapy Association, 11 pages.
Explanation of how PT and OT benefits people with HD. Practical
advice on designing a plan that combines maximum independence
with minimal risk. BOOKS
To see a listing of the book available on Huntington's Disease
VIDEOS
Video ~ HD on Caring
http://www.hdsa.org/edu/edu.pl?orderform#401
$20.00 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.
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; and 4) Nutrition and Swallowing
Video ~ HD on Communication Strategies for People With HD
http://www.hdsa.org/edu/edu.pl?orderform#401
$10.00 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.
Huntington Society of Canada, 1993. 20 minutes. Addresses the
speech and language difficulties associated with HD and offers
suggestions for improving communication. |
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