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
Products

INDEX Page

This section is to give you leads to manufacturers offering their products to help make every-day living with a disability easier.  I, in no way, endorse these manufacturer's and are only providing a link to their web page for your consideration.  If you are aware of a reputable manufacturer who has provided you with reliable, economical, products, please tell us about them in the Guestbook.

 
PRODUCTS
 
Abledata -Source for Assistive Technology and rehabilitation products with a searchable database of over 25,000 products for persons with disabilities. Sponsored by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education
 
AbleNet Inc. - AbleNet manufactures and sells assistive technology -- Switches, Communication Aids, Environmental Control Units and more -- which helps develop skills, foster independence and encourage participation for people with disabilities.
 
Able-Phone - Voice activated, speech recognition, voice dial speakerphones and hands free cordless phones. Puff-n-Sip telephone. NEW--K9 Medical Alert Dog one button emergency dial speakerphone. Adaptive switches.
 
Abilitations - The industries leading pediatric rehabilitation catalog for therapists, teachers and parents working with children with physical and learning disabilities. Product mix includes movement, positioning, aquatics, sensorimotor, adapted play, body moves and resources.
 
Accessible Playground Equipment - The manufacturers listed  offer handicap accessible, playground equipment, accessories and components and products. They have taken this important step to participate in providing these products please feel free to contact them regarding your specific needs.
 
Access-Able Travel Source, LLC - We have information and everything else you need to know about: travel with disabilities, mature travel, disability magazines, access guides, wheelchair travel, scooter rental, accessible transportation and more! World Destinations, Cruise Ships and Travel Professionals to assist you.
 
Accessible Environments Inc. - We specialize in accessibility products helpful in creating a barrier free environment in the home and business. Our product line includes: barrier free showers, vertical wheelchair lifts, bathroom aids, mobility aids, exercise aids, furniture and more. Offering hundreds of accessibility products.
 
AdamLab LLC  - Striving to provide low cost, high quality voice technology to all speech challenged individuals. We continuously developed numerous augmentative communication devices and accessories to help speech challenged individuals. Products offered are: Hawk, Hawk II, Hawk III, Blackhawk, Lighthawk, Superhawk 6, Superhawk 12, Superhawk Plus.
 
Adaptivemall medical equipment for special needs position...
pediatric positioning and medical equipment for children with cerebral palsy and other physical disabilities,
special needs strollers, special needs carseats, etc. You will love our FREE Shipping Policy!... http://www.adaptivemall.com/
 
Aids in Daily Living - Products/Services to aid in Daily Living.
 
AllegroMedical.com - Your discount source for home health care supplies. Wheelchairs, power scooters, lift chairs, incontinence supplies and much more... Shop online and save
 
All Cares - Specializing in Top Quality Disposable Care for Children and Adults. Child Care Products: Diapers, Training Pants, Youth Pants. Adults Products: Fitted Briefs, Ultra-Pants and Male Guards. Free Shipping.
 
American Discount Medical - Dedicated to providing an unlimited choice of pediatric & adult medical products at the absolute lowest cost. Merchandise is delivered Freight Free directly to you from the factory with the manufacturer's full warranty.
Specials
CloseOuts
General Med
Pediatric
Ambulation
Safety Products
Recreational
Assistive Technology Inc. - Make your bathroom fully accessible without a major renovation. Go from the commode to bath and never transfer again! Offering Reclining Shower Chair, Shower Wheelchair and the Beach Baby Stroller. All made from PVC material.
 
Augmentative Communication Devices from Frame Technologies
"Simple communication aids for the non-verbal person." Makers of the Voice-in-a-Box product line.
 
Aurora Systems Inc - Software for Special Needs Products for Learning Disabilities and Dyslexia, Augmentative Communication, Products for Speech Disabilities.
 
Bath Safety Products - Bath safety Homecare Medical products includes shower seats, whirlpools, wheelchair accessible showers and bath, and patient transfer systems.  Links to several suppliers. 
 
Broda Seating
Manufacturer of health care chairs focusing on the needs of long term care facilities and their residents.  Every family with somone with HD has loved this wheelchair. They also make a low rise bed.
 
Care Medical Equipment - Wheelchair & scooter rentals for Orlando, Disney, Universal, Kissimmee. We deliver to your hotel, timeshare, home. Electric wheelchairs, hospital beds, shower chairs & much more. Established 1980. We sell too!
 
Columbia Medical Mfg. - Equipment for physically disabled children and adults basic positioning, bathroom, and other supports for physically disabled children and adults? We manufacture basic positioning supports, including toilet supports, bath chairs, commodes, and a car seat for children up to 102 pounds.
 
Comfort House - A catalog for people with disabilities.
 
Communication - Our communication products address a range of impairments including dyslexia, memory retention, problem solving, sensory perception, and language comprehension.
Hardware | Software | General
 
Communication Boards - Communication Boards: Users simply point to pictures and words to clearly express themselves. Take them anywhere, they are easy to use and durable.
 
Communication Boards - How To Make One: E-CASE CLIPCASE Idea
 
Convaid - Distributor specializes in brand-name wheelchairs for disabled children and adults. Convaid specializes in lightweight, compact-folding pediatric, adult and geriatric wheelchairs. Convaid wheelchairs are built with unsurpassed quality and style.
 
Crestwood Company Communication Aids - The Crestwood Company has 274 "light-tech" products for children and adults who are unable to speak. Their selection includes 40 switch-adapted toys, switches of various kinds, talking pictures and passport kits, and voice-output speaking aids.
 
Diamond Crystal - Diamond Crystal Brands, Inc. thickener products  
Disability Mall - An easy-to-use directory designed and committed to featuring information on disability and medical products, resources and services with over 2,500 links including over 400 companies for your one-stop shopping
 
Disabled Dealer Magazine - America's No. 1 adaptive resources guide. Offering for sale used accesible vans, wheelchairs, scooters, & accessible homes nationwide. A monthly magazine.
 
Dr. Leonards Health Care Catalog - Shop the catalog for exercise equipment, housewares and general health aids. Check out its monthly specials.  America's leading discount healthcare catalog with savings up to 60%
 
Ease Cushion - A totally new, unique and patented method for ensuring positive blood flow to soft tissue areas under the compression forces due to sitting. The cushion adjusts, so that the body does not need to. This product PREVENTS pressure sores (decubitis ulcers) and promotes healing for those who have them!
 
EasyStand - Altimate Medical manufacturers of Easy Stand standing products (Magician, Glider) for children and adults. The EasyStand is available with support & mobile options. Enjoy the health benefits & independence of standing!
 
Edmond Wheelchair Repair and Supply - Save 10% to 50% on wheelchairs, scooters, powerchairs, bariatric wheelchairs, pediatric wheelchairs, rehab seating, rollators, homecare beds, bath aids, wheelchair accessories, rehab equipment, walkers, canes, crutches & wheelchair parts.

Exercise Video's - http://www.collagevideo.com/
Collage Complete Guide to Exercise Videos catalog there is also a section on Specialty videos that includes videos for seniors and "special situations". They offer the entire Sit and Be Fit series videos that are specially designed for people with different health issues, including videos for stroke, chronic obstructive pulmonary disease, multiple sclerosis, Parkinson's, osteoporosis and arthritis. Nothing specifically for HD, but depending on the particular physical health issues of the individual
pHD, one of these videos may be just the thing. Each video is  27 minutes long--22 minutes of actual exercise, and include "a gentle series of stretch, flexibilty and toning programs (mostly seated, some  standing)" along with "guidelines and warnings tailored to the individual problem." And there are lots of great videos in the catalog for caretakers, supportive friends and family, at-riskers and everyone else!

Express Medical Supply, Inc. -Providing quality products: Urologicals, Ostomy, Wound Care, ROHO Cushions, Trach Care, Incontinence, Exam Gloves, Skin Care, Suppositories & Wheelchair Ramps. We offer FREE STANDARD SHIPPING in the contiguous United States on orders of $75 or more.

Family Village - A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support including informational resources on specific diagnoses, communication connections, adaptive products and technology, adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more!
 
HDIS - Home Delivery Incontinence Supplies delivers incontinence products discreetly to your door. Offers largest variety, secure on-line shopping, free catalog, and knowledgeable, friendly Customer Care Representatives.
 
 
Innovative Products -Manufacturer of customized accessible mobility devices & standing devices that assist children & adults with severe physical disabilities including cerebral palsy & spina bifida. These devices allow children the freedom to initiate exploration, enhance problem-solving experiences & increase self esteem & peer perception. We can customize.
 
IPU Innovative Products
Innovative Products Unlimited, Inc was established in 1985 by a group of healthcare professionals frustrated by the mediocrity of basic healthcare equipment. Our plan was simple; build quality products that last. We chose the finest furniture grade PVC along with durable fabric and high performance casters. This winning combination enabled us to offer products of unsurpassed quality and durability.
 
Kirton Healthcare - Company which makes the Halesworth Chair, a highly specialized chair for those with Huntington's Disease. This chair has considerably improved the quality of life for a large number of Huntington's Disease sufferers in Europe. It gives great support and positioning, especially when eating and resting. It is strong and well padded to cope with severe involuntary movements, and has a padded legrest for additional support. It also has wheels and a push handle for easy maneuverability. Address: 23 Rookwood Way, Haverhill, Suffolk, CB9 8PB, England (Tel: +44 (0)1440 705352 or Fax: +44 (0)1440 706521 or Email: bev@kirtonhealthcare.demon.co.uk). Web site: http://www.kirton-healthcare.co.uk
 
Lifestand - LifeStand is a line of sitting to standing wheelchairs with 5 models to choose from. From a complete manual chair to a fully motorized standing wheelchair that is able to drive in the standing position.
 
MedSell - Med-Sell helps people buy and sell their USED medical equipment and find accessible HOUSING. This includes: wheelchair equipped vans, scooters, hospital beds, canes, walkers, Sleep Apnea machines, TENS units, ramps, hand controls, hoyer lifts, wheelchairs, electric wheelchairs, transfer benches, commodes, cushions, standing frames, stair glides, curb-siders, doctor's office equipment and hospital medical equipment. A non profit corporation  Search by areas of the US or European countries. 
Medical Equipment Exchange - NORD is a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Their Medical Equipment Exchange allows families to search for needed equipment or to place an ad on equipment no longer used.

Merry Walker Corporation - You can also call for a catalog 1-800-628-1441 from Advanced Health Systems PO Box 374, Talmadge Ohio  44278

Mobility - Mobility impairments can be caused by a wide range of illnesses and injuries. We offer a variety of alternative keyboards, pointing devices, and software programs
Hardware | Software | General.

Mobility Solutions -Specializing in custom wheelchairs and related equipment: power chairs, manual chairs, scooters, sport chairs, pediatric products, seating products, wheelchair parts, bath equipment, standers and walkers, wheelchair accessories and garage sale. A San Diego based organization serving S. California from two locations. We ship anywhere within the U.S.

M.O.M.S. Mail Order Medical Supply - They have many products. One was the Magnavox SecureWatch Personal Emergency Response System which is a personal alert system.

National Association for Home Care - Innovative Products Unlimited, Inc was established by a group of healthcare professionals frustrated by the mediocrity of basic healthcare equipment. Find an arrange of home health care products from beds to walkers including special gurney's for transporting and showers.

National Sports Center for the Disabled - The NSCD is most widely known for its success in providing and developing ski programs for children and adults with disabilities"

Neck Support - http://www.bcm.tmc.edu/neurol/struct/als/als6m.html  written for ALS but helpful if your loved on is having trouble holding neck upright. Headmaster Collar-This collar is lightweight, open, and feels more comfortable in warm climates. The headmaster provides support under the chin, does not encircle the neck, and feels less confining than some collars. We have found this collar to be very helpful for patients with weak neck extensors to prevent the head from falling forward. However, if weakness is present in rotation and/or lateral flexion (i.e. when shaking the head "no" or touching the ear to the shoulder), the headmaster will not be adequate and more support is needed.

New & Used Equipment -  Scooters, Wheelchairs, Stairway Lifts, Scooter and Wheelchair Lifts, Miscellaneous

North Coast Medical - Functional Solutions now offers on-line ordering of over 250 products that assist in everyday activities. Innovative products bring greater comfort and independence to daily living, and are especially beneficial to people in rehabilitation, recovering from injury or simply need relief from restrictive ailments, such as arthritis.

They have one of the products in here I used extensively for washing Kelly's hair.  It was very comfortable.  Our local hospital had Kelly's doctor write a script for adaptive equipment then allowed us to order them through the hospital catalog (discounted), billing our insurance company directly.  Doesn't hurt to ask!

Deluxe Shampoo Basin

Position the head and shoulders for easy shampooing with the Deluxe Shampoo Basin. Double-tube design prevents splashing. Inflate by mouth or with an air pump. Deflate for flat storage. Includes a 47" (119cm) long drain hose. Durable vinyl provides years of use. Basin measures 28" x 24" x 6" (71 x 61 x 15cm).  $26.95

We also used the Guardian® Locking Elevated Toilet Seat with Arms   This catalog wants $74.95.  We ordered ours through Dr. Leonard's catalog (see above).  Dr. Leonard's  now charges $49.99 for this seat. 

Physically Challenged - Services, support and information. Click on "Self Help" then "Physically Challenged" for services, support and information. Support in finding New and Used Medical Equipment.

P&H-The Heart of Health Education - They have several booklets such as  "Preparing for Home Care What's involved?" and "Safe at Home" available for $3.05 each.  Do a search under "Home Care"

Special Clothes For Special Children       Clothing for children with disabilities/for young children.  
 
Stitches From the Heart    - Specializing in custom clothing for children with special needs and stoma apparel for adult through infant.  

Wenzelite Rehab - Our mission is to provide patients with neurological disorders safe and secure ambulation. We offer unique Bariatric and Pediatric Products such as: Adult Anterior Safety Roller, our Bariatric Safety Walkers accommodate patients weighing up to 700 Ibs. Pediatric Anterior Rollers, Posterior Safety Walkers, Pediatric Seating and Positioning systems, Standers,The Traveler Stroller and the First Class Chair school chair.

Wheel Chair - Purchase - Important features to consider when purchasing a power wheelchair
World Wide Wheelchairs & Used Equipment  - One-stop online solution for selling or buying your medical equipment and related services such as Depends, electric beds, and home care products.

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We Need Your Help (MDA)

Recycle equipment you no longer use! Local offices of the Muscular Dystrophy Association throughout the country have equipment pools where items can be donated. They welcome anything from button hooks and wrist supports to shower seats, wheelchairs, and communication devices. The items will be passed on to other patients who can put them to immediate use.

If you have contributions, call your local MDA office and ask to speak to the Program Services Coordinator. For help in locating the office or Clinic nearest you, send an emai to l mda@mdausa.org or call 1-800-572-1717.

NOTE: You can also call your local MDA office and ask about equipment YOU need.