Articles discussing age and probability of getting HD
thought provoking experiences of others at-risk, what
if a parent hasn't been tested, what's in the best interest
of your child,an at-risk checklist, Q&A on risk of inheriting HD
Information on genetic disorders, genetic testing in HD,
counseling, psychological impact of testing, prenatal and
preimplanation, genetic resources and personal stories.
All available information I have had archived on JHD including
age of appearance, age of onset, children of parents with HD,
clinical description of JHD, what kids are saying, duration of
illness in JHD, symptoms, talking with children about HD, stages
of HD and other JHD resources.
An extensive list of descriptions of the various symptoms which
can be associated with Huntington's Disease from anxieties
through treatments. Resources include several HD specific
guidebooks and other available information.
Communication resources, problems and strategies
Extensive listing of resources, facts and suggestions
regarding nutrition, speech & swallowing guides,
warning signs, taste changes, weight gain/loss, resources
for fortified drinks/shakes, and resources on feeding tubes.
Articles discussing the various types of therapy helpful
for people with Huntington's Disease including behavior,
physiotherapy, physical and speech plus other resources.
Extensive listing of medications used in the treatment of
symptoms in HD from anti-depressants to vitamins. Links
to several excellent resources for looking up stats on
medications prescribed by your physician to access risks,
potential problems with other medications, etc.
Articles on the surgeries possible for Movement Disorders,
descriptions on the procedures used, what to expect. For
example, Vagus Nerve Stimulation, baclofen pump, etc. Also
information on preparing your child for the hospital.
Coverage of all the possible clinical visits one might have to
go through in the diagnosis and treatment of HD including
how to prepare for the, CT Scans, MRI's, Swallowing Test,
and other resources.
Guides for parents on determining if your child/young adult
has a problem with either alcohol or drugs, how to discuss
this issues with children, and other resources.
Straight talk on suicide, teens and suicide and other resources
to help families and young people recognize and deal with
this very sensitive and serious problem.
Articles on the stress children might experience in a divorce,
tips for divorcing parents.
Several excellent resources from guides on disability
issues, caring for a child with a serious illness, special
education programs, resources, financial planning for
a special child, resources, camps for special children
and a link to many WISH Foundations.
Child assistive technology available to help your child,
adaptive equipment and links to products.
Signs on what to look for in your child from an
behavior to an healthy self-esteem plus several
excellent links to additional resources.
Resources on how to help a child deal with death
Many HD families have a child who has a learning
disorder or has been diagnosed with behavioral
problems. This section discusses ADD and teens,
conduct disorders, FAQS relating to the various
disorders, and research articles.
Links to Huntington's Disease support groups,
information on how to start a support group in
your area and links to HD chats and on line groups.
Direct links to other resources on Huntington's
Disease and related information, Tips For Friends
of someone with HD.
Extensive list from benefits check up, Medicaid,
Medicare, Prescription Drug card programs (discounted
drugs), the Sliding Scale (how to get reduced fees if you
don't have insurance), Social Security and children with
disabilities and other resources. Excellent article on
what the Medical Insurance Bureau has on YOU.
Juvenile HD and ADD - Dr. Martha Nance responds to
my questions on the relationship between JHD and
ADD and thoughts on medications.
Articles and resources for those caring for someone
with HD, self-assessment tests, caregiver's handbook,
First Shift brochure, Respite, Helpful forms which can
be printed out, tips and useful tools.
Articles about Jean Miller and her daughter, Kelly E. Miller
who had Juvenile HD.
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