Advocacy issues in HD, Map of Congress, how to contact
your elected officials, Bill in Congress and more. Donations; Where to make them for HD, how to make them through your employer.
Media: Information for the Press, Media Guide
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.
Creating HD Awareness
PostersHeart wrenching pictures which can be used as posters or handouts
to help promote awareness to Huntington's Disease. These were created by Sue Leck and Jean Miller using pictures of people,
young and old, living with HD. Please feel free use them at work, school, etc.! There are currently 102 posters!.
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.
Want to search the web each day for new developments
on HD? Check out all of these links on a daily basis!
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 DefinitionsDon't know what Ataxia, Autosomal dominant triat, Aphasia
and many many more words used to describe symptoms of HD or its causes? You can probably find the definition
here! 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!
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.
HD Research Papers
This site has been established for the sole purpose of
storing Huntington's Disease papers to share that can't be emailed as an attachment. This site is NOT linked to any of my
other sites. For current information on HD research, check out the HDL Website (click here)
My primary website replacing many of the original pages
listed under Endoflifecare sites. This is where new pages or topics are added.
Some older caregiving articles written by Jean Miller, Betty Ann
McDorman, Louise Wilkinson and others plus links to other articles.
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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.
My first HD dedicated website which is no longer being maintained,
although some information remains there.
Huntington's Disease
SymptomsIt 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.
InsuranceThere 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.
Information from this site, which I can no longer access or change,
that is directly related to JHD is being moved to the new site. Other information such as symptoms, medications, etc. has
been or is being moved to stand-alone sites for those subjects.
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Louise Wilkinson ~ The Wit & Wisdom of
Living With Huntington's Disease - A site dedicate to the writings of Lou, a person with HD who, through her own personal experiences growing up in
a family with HD, to later testing positive herself and having children at-risk, helped hundreds of people understand
what it is like, from the prospective of someone with HD. |
Our Final Journey My very first website dealing with end of life issues which people
seldom talk about until they have a need. This site is a wealth of information on Assistive Technology, Divorce Issues, drugs
and medications, forms, employment issues, estate planning, caregiver resources, family and patient resources, financial aids,
insurance, legal issues, long term care, symptom support, feeding tube and end of life care, hospice,
saying good-byes, the dying experience, funeral planning, grief and sorrow.
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. |
