Huntington's Disease Support Information

Other Resources

Home
Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
Hawaii
Idaho
Indiana
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Minnesota
Mississippi
Missouri
Montana
Nevada
New Hampshire
New Mexico
New York
North Carolina
North Dakota
Wyoming
Wisconsin
West Virginia
Washington State
Oklahoma
Oregon
Pennsylvania~Delaware Valley
Pennsylvania~Western
Rhode Island
South Dakota
Tennessee
Utah
Vermont
Virginia
Michigan
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources

Other Resources
 "Adapting Motor Vehicles For People With Disabilities" – a National Highway Traffic Safety Administration’s brochure
 
Applying For Government Benefits
Dental-Even if you cannot pay for dental care there are ways in which to receive help. Contact the American Dental Association (ADA) (1-800-621-8099) to learn about dentists who assist individuals on fixed incomes by offering their services at reduced fees.
 
 
 
 
 
GovBenefits.gov is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
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.
 
Find Your State Insurance Information Here: http://www.healthinsuranceinfo.net/
PDF Document - Getting and Keeping Health Insurance - A guide. The Guide summarize your protections, and so may not answer all of your questions. It is not a substitute for legal, accounting, or other professional advice.
 
Locate Missing Records- families who have become responsible for another's affairs may need to request copies of lost records needed to apply for benefits like Medicare or Medicaid, to make insurance claims, or to manage affairs. Resources in USA, UK and Canada.
 
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
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.
 
Avoiding Probate, Conservator~Guardianship, Estate Planning, Living & Other Trusts, Wills & Beneficiaries, Employment Issues, Financial Aids. Divorce Issues, Legal, Emergency Planning and more.
 
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.
 
Insurance
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.