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Forum-Caring IS Sharing- A place for you to tell special stories about caring for someone with Huntington's Disease
Java Chat Room - a place to tell someone to meet you to talk about HD, issues, get help, etc.
Map-Where We Live - Add where you live in this world, see where others living with HD live.
Poll- NEW POLL Oct. 2004 designed for people with HD. | |
Advocacy
Self explanatory. Provides information and links on how you
can get involved helping make changes or donations to help HD families, contact your state representatives,
locate media in your state, etc..
Caregiving
Activities of
Daily Living
Activities of daily living are a commonly used term in the health care
and professional caregiving world to describe a person's ability to care for him or herself. In a progressive disease, such
as Huntington's, measuring your loved one's Daily Living capabilities on a frequent basis (quarterly, semi-annually or annually)
can provide you and their primary care physician the ability to evaluate the severity of the changes and develop a plan of
care that allows for meeting both the physical and psycho-social needs of the care recipient.
Communication
Communication/Speech in Huntington's Disease. Currently have descriptions
of several things causing problems in HD such as Aphasia, Apraxia, Miscommunication, Cognitive Issues, plus many more. More
to be added when time is available.
What Is A Feeding Tube? When To Consider One. Feeding Tube
Decision in HD, Tube Feeding in Advanced Stages of HD,Using Baby Foods, Oral & Dental Care, Jean Miller Articles &
Checklist and a ton of resources including charts to help in care.
Forum-Caring IS Sharing - How can we get caregivers to recognize when they are worn out? How can we get caregivers
to ask for help? Where can we find the money/
time needed to provide the hands-on help that caregivers need? And what can organizations
like local HDSA Chapters and support groups do to better serve ourselves and each other? What are your thoughts about end-of-life
care in HD? Share beautiful stories in HD care. What have you done? What has helped you?
HD Caregivers - Old site, not being updated. Information
specific to caregiver needs. The information is slowly being moved to other related sites located as time permits.
Once complete, this site will be deleted.
Insider Tips-Successful Caregiving - Risa Levovsky articles. Rita is an HD Friend and the author of Alzheimer's
Tips Revealed: A Guide To Becoming A Successful Care Giver In The 21st Century
Caregiving articles written by Jean Miller, Betty Ann McDorman, Louise Wilkinson
and others plus links to other articles.
Disability Resources
Applying For Government
Benefits - Provides information about Medicare, Social Security programs (Disability, SSI, Retirement and Survivor) Benefits
as well as provides the resources to calculate the benefits you should receive, how to make appeals, what your physician
should do to help you and other related information.
Drug Information - Resources to look up medications, alternative medicines, Ask Questions,
Clinical Trials, Safety Issues, etc.
Our Final Journey ** - Provides families living with a terminal illness information on
Estate Planning including wills, powers of attorney, advance directives, guardianship, conservatorship, avoding probate,
providing for children, etc.. Links to information for the Patient with a terminal illness, the Caregiver and the Family.
Information on Legal Advice, Insurance, Employment Issues (flex scheduling, Family Leave etc), Financial Planning and tools,
Divorce Issues Day care centers, assistive living facilities, nursing homes, sensitive and informative information on the
end of life, grief and support etc
Find It
Where available shows links to an individual HDSA
Chapter, Affiliate, Support Group or Center of Excellence (CoE) website and/or newsletter. You might want to check them out
periodically, as most have some excellent updates or information on Huntington's Disease!
Search Engines - Do searches yourself for Huntington's Disease, Neurological conditions, caregiving, disability
issues, etc.
Genetic Testing
HD Genetic Testing - a collection of articles, stories and information for people considering
being tested for Huntington's Disease and their families. The decision to be tested for Huntington's Disease is
an extremely difficult and soul-wrenching one to make. It is hoped the information contained here can help you in this
process. No matter what, please know that you are NOT alone!
HD Specific Guidebooks
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Advanced Stages of Huntington's
Disease Handbook
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Caring For People With Huntington's
Disease
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CNA's First Shift
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Facing Huntington's Disease-A Guide
for Families
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Juvenile Huntington's Disease Handbook-A
Guide for Physicians, Neurologists and Other Professionals
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Nursing Care in Late Stage HD
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Physical & Occupational Therapy
for Huntington's Disease
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Physician's Guide to Huntington's
Disease
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Understanding Behavior In HD-Dr.J.Paulsen
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Understanding Behavior-Other Resources
Dr. Chiu article discussing quality of life in HD care: "What makes for quality of life is worth
doing. What detracts from quality of life in not worth doing."
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State Specific Info
Chapter/Center/Genetic Links - all available links to all HDSA Chapter
Websites, Chapter Newsletters, Center of Excellence Websites and Genetic Testing Center Websites from each state.
HD Support Information State-By-State - a State-by-State listing of HDSA Chapters, Support Groups, Centers of
Excellences, physicians, nursing homes, Hospices and other resources to help families living with Huntington's Disease.
State Resources - Non-HD Specific. Contains information or links related to Assistive
Technologies, Disability Resources, Domestic Violence Legal Information, Family Legal Guides, Family Services, Guardianship
Programs, Health & Human Services Quick Locators, Legal Assistance, Legal Forms - State & Federal, Long-Term Care
Ombudsman Programs, Medicaid, Medicaid Waiver Programs, Social Security Offices, Summer Camp Programs, United Way~Local Support
and more.
Symptoms Resources
Late Stage-Symptoms - This is only the start of adding articles
that may help those caring for someone in the later stages of Huntington's Disease. I have a LOT more to upload.
There are quite a few articles that
describe the various "stages" of HD. This site provides a Compilation of The [all] Stages Of HD. There are some resources
available at the end of "stage" plus each one is in Word format for printing or sharing.
This section deals specifically with Swallowing
problems associated with HD. It covers the description of problems in swallowing, therapies and products, questions to ask/FAQS,
articles written specifically for HD, Safety & Warning Signs, brochures, special diets, the 5 levels of food consistency,
testing procedures used to determine swallowing capacity, and more. Many items are available in
Word for printing or sharing.
Useful Resources
HD Helpful Forms - 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.
HD Medical Definitions - I started the accumulating these definitions which are sometimes used to describe symptoms of/or tests for HD or discuss other diseases or condition which
have symptoms similar to Huntington's Disease. Information comes from either the Physician's Guide to HD or other neurological
and movement disorder websites.
Juvenile HD
Juvenile Huntington's
Disease - under construction. Information on
JHD is being moved here as I'm no longer able to make changes to the old site. Information
on the old (below) site, not specifically related to JHD, is being moved to other links to be included here then will
be deleted.
Juvenile HD - Old site, cannot make changes. Provides information
for families with a child with juvenile HD or one at-risk. Include at-risk, genetic testing/testing of children, related symptoms and how to recognize/help, types of therapies, various medication and drug
searches, surgeries, procedures used in testing, etc.
Young Adults
HDSA National Youth
Alliance (NYA) -The NYA is the Huntington's Disease Society of America's (HDSA)National Youth Alliance
which is for all young people, ages 9 through 29, who are living with Huntington's Disease in their life.
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!
This site does not contain a lot of technical data, instead mostly
provides resources for young people to learn a little bit about Huntington's Disease, Genetics and lots of resources to help
with life, school and college plus links to fun and interesting things to do! For those who are budding scientists,
or doing papers on genetic diseases in school, you might want to check out the Genes & Genetics or Science sections!
Miscellaneous
These Memorial Quilts are a powerful and beautiful
reminder of the terrible impact of Huntington's Disease in all of our lives. See pictures or learn how you can submit a square.
The Huntington's Disease Memorial Quilts are available for loan to any HDSA Chapter, Support Group, Center of Excellence or
HD family supporting an HD awareness, educational or fund raiser event. They make a very visible
statement to those attending your event.
Huntington's Disease Convention Scholarship Fund -
This scholarship fund helps send people having financial difficulty to an HDSA National Convention
each year. Applicants can be any member of an on-line HD Support group who meets the criteria. Learn about the
scholarship, ways you can help and see the fun we have!
See Time, Inc. HDSA Awareness ads "Faces of HD" for
2003 & 2004 and other awareness ads you can use to help promote awareness to Huntington's Disease.
Fix It Tips! - Gads, most of us probably don't WANT to know how
to fix most of the things that WILL break around the house. Unfortunately out of necessity or lack or finances, caregivers are stuck with this task!! Hopefully these links will provide you with step-by-step instructions on how things
work and how to fix then yourself. |
