Juvenile-HD

HOME

INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
HD Links

INDEX Page

On Line Resources
(click on items in blue)
 
 
Abuse of HD Person
http://www.kumc.edu/hospital/huntingtons/abuse.html
The patient with moderate Huntington's disease, like any person
suffering from a chronic disease, can become an easy target for
abuse. Read more about this on this link.
 
ADD/AD-HD - See SECTION 18 - ADD/ADHD
discussing ADD, AD-HD, conduct, and resources
 
Addictions - See SECTION 11- ALCOHOL/DRUGS
covering alcohol and drugs and children/teens.
 
Advanced Stages Caregivers Handbook
Written by medical professionals for at-home or care-center
caregivers, this book addresses the unique circumstances
presented by late-stage HD. See HD Specific Handbooks
 
Assistive Technologies
discussing child devices and resources.  Also see
 
 
At-Risk For HD?
 
 
Behavioral and Sexual Problems in Huntington's Disease
$.50 Order this document online from this link to HDSA's website or
call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16.
Shirley Dalby, from Horizon, No. 64, 1992, Huntington Society of
Canada, 4 pages. This article discusses in everyday language
the kinds of changes in mood and behavior that can be
 
Behavioural Problems - 61k
PDF format of this document is available at this link from the
UK Huntington's Disease Society
 
Behavior 
Understanding Behavior-Dr.Paulsen
Provide people living with HD this excellent resource from Dr. Paulsen which addresses the various aspects of behavior in someone with Huntington's Disease.  Includes tips on how to help.  This is the next "Bible of HD' to the Physician's Guide to The Management of HD.  Here are the chapters:
 
 
discussing disability benefits, Medicare, Medicaid, etc.
You can also find more information on Insurance at:
 
Caregiver's Package
http://www.hdsa.org/edu/edu.pl?orderform#401
$2.00 Order this document online from this link to HDSA's website
or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16. 
Includes the following: 1) "Practical Hints for Care Givers HDSA,
1988, 9 pages. Covers eating, swallowing, clothing, cleanliness,
communication, smoking, recreation and attitudes. 2) Nursing Tips:
A Collection of Caregiving Hints 1995, HDSA, 9 pages. A compilation
of professional caregivers' suggestions on feeding, communication,
behavior and other daily concerns. 3) Huntington's Disease Management 
6 pages. Dressing aids, relaxation, nutrition, communication, and
physical fitness.
 
Centers of Excellence
See HD Support Information to locate one near you. For Family Services
CoE's are comprehensive medical centers that bring together multi-
disciplinary teams of professionals who are skilled in assisting families
facing HD. These may include: pediatric neurologistsmovement disorder
specialists; physical, speech, and occupational therapists; psychologists
or psychiatrists; dentists and pediatricians 
 
Communications Skills - 132k
PDF format of this document is available at this link from the UK
Huntington's Disease Society
 
Huntington's disease affects many skills which are necessary for
effective communication. Disturbances of speech production, or
the mechanics of speaking.
 
Jim Pollard's excellent brochure to help new workers or at home
caregivers learn the basics of helping someone with HD.
 
Dental-Importance of Dental Care - 45k / HDA UK Fact Sheet #8
 
covering Caring for a seriously ill child, special education, financial
planning and support, legal needs and camps.
 
Divorce - See Section 13 - DIVORCE covering divorce and
child stress, tips for parents.  You may also want to read the
advise on this page Divorce Issues  realting to financial info
etc.
 
Driving -Evaluating Capacity in HD
 http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 Order this document online from this link to HDSA's website
or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16..
1994, 11 pages. Practical guidelines to assist physicians and other
professionals in making this difficult determination.
Also, see the Driving Assessment Checklist on this link:
 
Eating - See
 
discussing self-esteem, behavoir and resources.
 
Estate Planning/Advance Directives, etc.
Our Final Journey
Purpose:   Provide families living with a terminal illness information on Estate Planning,  powers of attorney, advance directives, guardianship, conservatorship, avoiding probate, providing for children, etc..  Here are a few of the many informative sections from this site:
 
Facing HD~Family Handbook for Families and Friends
covers topics such as Medical Facts, How HD Is Passed On,
Learning The Diagnosis, Young People At Risk, The Course of the
Illness, Grieving, Hope For The Future
 
(Dementia) - Family Caregiver Alliance
 
Fast Facts About Huntington's Disease HDSA website  http://www.hdsa.org/edu/fast_facts_brochure.html
 
Genetic Testing Resources-
 
Grief - See Section 17 - GRIEF
Discusses helping a child, resources
 
Help CURE HD Free Greeting Cards
Purpose:  Over 1,000 every day cards for almost any occassion with the message "Help CURE HD" on each.  Most popular are "Life", "Excuses" and "Inspirational" cards.  These cards a free for any HD fund raising event.  You can order the CD with the cards on the Hunt-Dis HD Convention Scholarship website.
Home safety in Huntington's Disease
Written by Dr. Richard Dubinsky 
 
HD Helpful Forms   Simple_book.gif
Purpose: Documents uploaded in ose: 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.   Below are sample documents from this site.

HD Advocacy/Media/Donation Information

HD Activities of Daily Living

HD FAQ

HD National HD Roster

 
Huntington Study Group (HSG)
See what's going on in clinical trials for Huntington's Disease.
The Huntington's Disease Study Group is your group of scientists
looking for ways to slow and/or stop the progression of HD!
 
HD Helpful Forms   Simple_book.gif
Purpose: Documents uploaded in ose: 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.   Below are sample documents from this site.
Hunt-Dis HD Convention Scholarship
Purpose: List items;fund raising items to help send HD
families from Hunt-Dis to HDSA's National Huntington's Disease
Convention each year who, due to financial difficulities from
living with HD, would not otherwise be able to attend.
Several items can be found here including orginal artwork,
calendars, links to Amazon where the HDSF has an associate
membership to help raise funding, books by Carmen Leal,
the Non-Chew Cookbook, etc.
 
Huntington's Disease
http://www.hdsa.org/edu/HD_booklet.htm
HDSA website brochure to provide to health care people, or
anyone seeking info on HD 
 
Huntington's Disease: A Guide for Families
http://www.hdsa.org/edu/edu.pl?orderform#401
FREE first copy Order this document online from this link to
HDSA's website or call 1-800-345-4372 and ask for Anita
Mark-Paul Extension 16..HDSA, 1996, 21-page booklet.
This short booklet offers an overview of HD.
 
Huntington's Disease Advocacy Center (HDAC)
HDAC website (click here)
HDAC was started to help family members affected by Huntington's Disease find answers to the many questions that need to be answered. This includes caregivers, those at risk, and those that have tested positive for HD. 
 FAQ
 
Huntington's Disease and Diet - 120k PDF Format/HD UK
Fact Sheet #7
 
Huntington's Disease Lighthouse
HDL Website (click here)
Jerry Lampson's HD Lighthouse has had over 1 Million visits since it's inception. Among the many things HDL offers is current information on Scientific findings in HD, clinical trials, resourceful documents on Huntington's Disease and a message board.
 
Huntington's Disease Society of America
HDSA
Find the latest scientific news, publications, chapters, support
groups, Centers of Excellence, the Marker on line (a wonderful
quarterly newletters from the HDSA). Sign up on line to get the l
atest information emailed or mailed to you.  
 
Huntington's - International  HD Disease Societies
http://www.huntington-assoc.com/ihaadr.htm
Locate an HD organization in your country
 
Juvenile Huntington's Disease
Section   3 - JHD  Also see the Huntington's Disease of Canada's
booklet on JHD.  Click here  English (in PDF format)
 
 
Locate A Neurologist
MDLocator is an easy-to-use, comprehensive neurology physician locator system. Personalize your search by zip code, specialist and/or by treatment.
 
Movement disorder clinics
The Parkinson Foundation has an Excellent Website to help locate a Movement disorder clinic in any state by clicking on the state. Most clinics that are experienced in PD have someone knowledgeable in HD.
 
HD Helpful Forms   Simple_book.gif
Purpose: Documents uploaded in ose: 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.   Below are sample documents from this site.
 
Juvenile HD Website
Purpose:  To provide 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, suicide, divorce, disabilities, assisstive technology, grief, ADD/AD-HD, support, links, benefits/insurance and a bio/my personal experience with Kelly. A message board has been added for those that want to contact others in the same situation.
 
Understanding Behavior-Dr.Paulsen
Purpose:  Provide people living with HD this excellent resource from Dr. Paulsen which addresses the various aspects of behavior in someone with Huntington's Disease.  Includes tips on how to help.  This is the next "Bible of HD' to the Physician's Guide to The Management of HD.  Here are the chapters:
Few Topics-Fast Connection
Kids-Young Adults HD
PurposeInformation for kids/young adults living in  a family with HD to help understand their loved one with HD or to recognize feelings they themselves may be experiencing/how to get help; how other young people feel living with HD, HD support groups and information, links to games, crafts, fun learning sites, etc.,  some of Kelly Miller's poems, a Live Chat Room (need password/contact me) and a Message Board to talk with other young people living with HD. Below are a few of the topics on this site:
 
KIDS/YOUNG ADULTS
Purpose:  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!
 
National Youth Association-Huntington's Disease
This is a DYNAMIC group of young people and young adults
living with HD in their daily lives who formed the NYA with the
goal to make theirs the LAST generation of HD. Your child
(ages 8 to 30) can join the NYA by going to this link and clicking
on "More Information" at the top of the page. They also have
their own Message Board you can join there too! Young people
living with HD have different needs then most of the adults and
it's wonderful this organization has been started to help them!  
 
Nutrition-Benefits of - in HD
 
HDSA document covering Physical & Occupational  Therapy in all
stages of HD. 
 
Includes in-depth information on: the general principles of
treatment, a new section on genetic testing, updated information
on medications, and an expanded section on the management
of cognitive and behavioral problems.
 
PDF format of this book is available from the Huntington Society of
Canada.  Click on English
 
Procedures - See Section 10 - PROCEDURES explaining CT Scans,
MRI's, Swallowing Tests, test commonly used etc.
 
Recipes To Help With Swallowing see HDAC's
Fact Sheet 15 - Huntington's Disease Association (UK)
 
Sexual Problems in HD- 43k PDF format of this document is available
at this link from the UK Huntington's Disease Society
 
 speech & swallowing problems
Some basic tips on communication and help with eating from the
South Shore Neurologic Associates 
 
Speech
on HDSA's website in PDF format
 
Support -  See Section 19 - HD SUPPORT GROUPS for information
on HD support groups, chapters and on-line for both adults and
young people
 
Suicide - See Section 12- SUICIDE information for parents and
teens.   Also you can order Suicide and Huntington's Disease
link to HDSA's website or call 1-800-345-4372 and ask for Anita
Mark-Paul Extension 16. Personal perspectives of three HD family
members, followed by a psychiatrist's thoughts on the subject. 
 
Surgeries - See Section   9 - SURGERIES surgeries for movement
disorders
 
Symptoms - See Section   4 - SYMPTOM RECOGNITION covering
all emotional related possible symptoms from Anxiety through
Tremors
 
Talking With Children About HD
UK Also see section on this site, click on Talking With Children About HD
 
Teenagers - Information
Information for Teenagers  in PDF format of this document  from the
 UK Huntington's Disease Society
 
Telling the Children HDSA Brochure
http://www.hdsa.org/edu/edu.pl?orderform#401
FREE 1st Copy Order this document online from this link to HDSA's
website or call 1-800-345-4372 and ask for Anita Mark-Paul
Extension 16.  2 pages. How, why, when to tell children about HD. 
 
Telling Young People About HD- Spanish/Espanol
 
Therapies - See SECTION 7 - THERAPIES  covering Behavior,
Speech/Language, Physical, Occupational and physiotherapy and 
 
Therapy-Mid-Stage Huntington's Disease
http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 Order this document online from this link to HDSA's website
or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16.
Suzanne Imbriglio, PT, Clinical Management, Vol. 12 No. 5,
 Sep/Oct 1992, American Physical Therapy Association, 11 pages.
Explanation of how PT and OT benefits people with HD. Practical
advice on designing a plan that combines maximum independence
with minimal risk. 
 
BOOKS
To see a listing of the book available on Huntington's Disease
 
VIDEOS
 
Video ~ HD on Caring
http://www.hdsa.org/edu/edu.pl?orderform#401
$20.00 Order this document online from this link to HDSA's website
or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16.
Huntington Society of Canada, 1985. 110 minutes. Discusses four
major care topics: 1) How To Deal With Difficult Behavior 2) Mobility
3) Speech and Communication; and 4) Nutrition and Swallowing
 
Video ~ HD on Communication Strategies for People With HD
http://www.hdsa.org/edu/edu.pl?orderform#401
$10.00 Order this document online from this link to HDSA's website
or call 1-800-345-4372 and ask for Anita Mark-Paul Extension 16.
Huntington Society of Canada, 1993. 20 minutes. Addresses the
speech and language difficulties associated with HD and offers
suggestions for improving communication.