Huntington's Disease Support Information

Other Support Resources

Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
New Hampshire
New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources

Index~HD Search

Other Support Resources
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.
Information covered on this link is resources which might help HD families apply for Government and State disability benefits; how to estimate your benefits; makes appeals; how your physician can assist you; and links to information for professionals such as HDSA Chapter Social Workers as well as other resources. The information is designed to provide general advice only.
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.
Looking for prescription drug insurance? Find information on prescription drug plans and plans. Look up any medication prescribed, check on Alternative medicines, and learn about safety issues. Learn about the "sliding scale" if you don't have insurance. See the "New Drug Checklist-Q&A's", "Keeping Track of Side Effects" Over-The-Counter stuff and more. Also excellent links to Rx Programs, Benefit Check Up, Medicare, and discount pharmaceutical drug discount programs. Information contained on the individual pages of this site is provided for your reference and convenience only.
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.
This website provides helpful forms to families living with Huntington's Disease to help organize their daily caregiving needs. It contains DOZENS of forms you can use everyday, most of them are in Word format for easy printing and sharing!
HD Medical Definitions
An accumulation of definitions I found 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. The list is very long, but interesting!
Huntington's Disease Symptoms
It is extremely important that you are familiar with all the possible symptoms, which might be affecting the quality of life for the person with HD. The symptoms appearing in this section can either be related to Juvenile Huntington's Disease, Huntington's Disease in adults, some other condition, or be caused by a side affect to medication(s). This site is still being updated and developed.
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more. If you would like more information on a particular subject, use one of the Search Engines to help you find it.
Information here is either directly about Juvenile Huntington's Disease, or other information, which will hopefully be helpful to families who have a child with JHD or are concerned about their child having JHD. Information from the old JHD site, which I can no longer access to make changes, is being moved here as time permits. When this is completed, this site will be deleted.
Caregiving articles written by Jean Miller, Betty Ann McDorman, Louise Wilkinson and others plus links to other articles.
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. Additional information and tips will be added as time permits.
The following direct links are from two of my other websites, Our Final Journey and the old Juvenile HD Website.  Click on the underlined title to be taken to that information.
From Section 8 of the old Juvenile HD
Medication Information
HD Treatments                                                                                              
For other end-of-life issues, please visit
An excellent article offering suggestions for helping you to initiate a discussion with your loved one on personal choices that need to be made.
-Ways To Avoid
-Living Trusts-How To Avoid Probate
-Using Roth IRA's To Avoid Probate
What is Conservatorship?
What Is A Guardianship
-FAQS (facts)
What Is Estate Planning?
What Is An Estate?
Who Should Have An Estate Plan?
When should I start my Estate Plan?
Where can I find some examples?
Should I use a lawyer?
Getting Started
-Getting Organized: Important Planning Steps
........Important Papers
........Personal Records
Estate Planning Resources
-Legal Facts
-Do You Need A Lawyer?
-Why You May Not Need One
-Tax Saving AB Trusts
-What's the Difference: Wills & Living Trusts?
-Crash Course in Wills & Trusts
-Disinheriting Family Members
-Disposition of Property With or Without A Will
-Ethical Wills- Preserving your legacy of values
-Executors: What You Need To Know
-Final Arrangements why put this in your will?
-Making a No Frills Will
-Making Your Will Legal
-Special Property Rules for Marriend People
-What You Can't Do In Your Will
-Choosing A Guardian
-Leaving Property to Young Children
From Our Final Journey:
Americans With Disability (ADA) FAQS
Disability Discrimation
Family Medical Leave
-Medical Certificate
-Employer Notice
Flex Working Hours
-How To Get It
-Sample Polices & Forms
-Ways of working it
Illegal Reasons For Firing
Losing or Leaving A Job
Of Genes and Pink Slips: Genetic Testing Goes To Work
Social Security
-More Resources
Calculating Your Net Worth
Credit Reports
Credit Scores
Daily Money Management Services
Debit Cards
Evaluating Cash Flow
FAQS On Debt & Bankruptcy
Financial Planning
Food Stamps
Home Loans
Planning Your Spending
Repayment FAQS
Reverse Mortgages
-Loan Calculator
-Get the Booklet "Home Made Money"
-Bankruptcy Letter before filing
-Credit Repair: Letter disputing charges
-Notice to Creditors
-More Resources
Unfortunately some families are faced with divorce issues in order to receive proper care for a loved one who is seriously ill or the changes in the marriage caused by the illness drive one partner to seek a divorce.  This section offers numerous resources in divorce planning and requirements.
State, Federal and International Laws, Supreme Court Cases, Q&A's, and Resources on the hiring of an attorney.
Planning advice for Special Needs people, plus other disaster and safety information from the American Red Cross.
Comprehensive Curriculum for Care Providers
to the Huntington's Disease Affected Community
1998 (revised)

Family Caregiver Alliance (FCA) & the
Huntington's Disease Society of America (HDSA)
Available from FCA
425 Bush St., Suite 500
San Francisco, CA 94108
(415) 434-3388

Cost:  $150.00 (CD ROM) includes shipping & handling

This state-of-the-art training curriculum was developed to
train allied
health professionals and nursing home staff about Huntington's disease, appropriate care techniques and resources for affected individuals and
their families.

The 18-part modules cover a compendium of topics including:
physical and cognitive symptoms, behavior problems and management techniques, pharmacological and non-pharmacological interventions, speech and communication, eating and nutrition, activities of daily living, nursing, genetics and genetic testing, family issues, stress management for family caregivers, resources and care options, and legal and financial issues.