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
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
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
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
Parent Resources
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
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 Resources
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
-Seizures ~Special Populations
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
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-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Why Certain Symptoms Occur
Symptom & Treatment Resources
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
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
-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
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
A-Z Mental Health Drugs
-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
-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
Surgery-Movement Disorders
o Surgery Resources
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
Divorce & Child Stress
Tips For Divorcing Parents
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
Child Assistive Technology
Adaptive Equipment Resources
Signs of Unhealthy Self-Esteem
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o Emotional Support Resources
Helping Child Deal With Death
o Grief Addtional Resources
ADD & Teens
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FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
HD Support Groups
National Youth Association
HD Links
Related Resources
Tips For Friends
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
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
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
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
HD - What Kids Are Saying


The following were replies from some of the young people in the HD NYA group to questions on www.Suite101.com  on HD which might give you some insight in how young  adults living with HD feel.  I've removed their names and email addresses for their privacy.
Hopefully it will provide readers with a little insight that our children and young adults need your support and help in dealing with HD every day and in helping them understand their risks and options for their future.
Author:   Jvabean     
Date:   May 30, 2000 1:27 PM
Subject:   Huntington's Disease and Teens/Kids

I want to start a discussion with those of you in your teens or below who either have been diagnosed with HD or are at risk for inheriting it.
  • What issues do you deal with?
  • How do you feel about HD?
  • What do you want to say to us who are older?
  • How can we support you?
  • Can you share forums that we can post regarding places for young people to go that have questions and or encouragement that we could post?

Thank You... Julie Sando/Contributing Editor/Huntington's Disease.


# Joe

What issues do you deal with?
Most teens involved with HD deal with the fact that one or more family members is not normal. This is especially the case when one of these family members is a parent. We have to watch our parent deteriorate from a normal loving parent that would do anything for you to someone that is less than capable of expressing the compassion they would like to because the disease affects their judgement and behavior towards everyone.

This is easily seen in the case of my mother. Although inadvertant, she became unknowingly abusive towards me, and I was forced to go to day care until my grandmother would arrive home from work just so I would not be left alone with my mom.

Also, there is the concept of explaining the situation of your family to your friends. How do you do it? Do you do it at all? These are questions each of us deal with in our own ways. Simply put, things are a lot different when you have a parent with HD, in thousands of aspects. If you can think of a scenario, chances are it's different when HD takes a parent out of the picture.

How do you feel about HD?
I hate it. Everyone does. I wish it didn't exist, but it does, so what can you do about it. You just have to stay positive and not let it beat you. Sit and complain, or stand and fight. Be active, do what you can as long as you are comfortable doing it. Not all people are outgoing and willing to risk criticizm by putting up posters and things of the sort, but those same people can fight HD in other ways. It all depends on the person.

What do you want to say to us who are older?
Not sure where you were going with this question. See last few sentences of above paragraph.

How can we support you?
The discussion groups at this year's convention were great in my opinion, we just need more of them.

Can you share forums that we can post regarding
places for young people to go that have questions and or encouragement that we could post?  I think we should just keep an email ring going around, and have questions and advice circulated in that manner.

Thanks for reading

#2 Staci

What issues do you deal with?
I deal with the issues of whether to be tested or not when I turn 18. I also have the worry of my brother having it. My main issue right now, is trying to make the best of the moment, my mom is moving out soon, so I'm trying to help my best with her.
How do I feel about HD?
I hate it and the fact that my life was changed so greatly by it, but what can I do. I know that it has made me into a better person now and as well as in the long run. So I do the best I can to not be too big of a baby and do all that I can to help educate and be active with HD.
How can we support?

This really is the same question for me. Personally, I want someone to listen and be there for me when I need a shoulder or helping ear. I don't want them to try to fix my problems, just help and give advice. We all need friends, but with a disease like HD, I depend on my friends to help me not be totally depressed.
Can you share forums that we can post regarding places for young people to go that have questions and or encouragement that we could post?
I think it is great that we have our e-mail chain, I think we should expand it to more like a monthly newspaper or something. I think it's great that we try to help each other out, I encourage everyone to be active in this and feel free to ask anything, whenever possible. And I greatly encourage those who can to come to the National Conventions in California this summer.

#3 Shelly

what issues do you deal with?

for starters HD shapes the way i make decisions. adults have been telling me for years to not let HD rule my life. this coming from people that know nothing of the situation. marriage and children are an issue, just like testing. testing is a touchy issue, and should be left only for the AR person to decide what to do.

how do you feel about HD?

i don't particularly like this question because it gets you nowhere. what kid will say yes. of course HD sucks and it is awful to have to be a responsible teenager, and look after mom or dad. I'm 19 and already worry about finding good insurance and making sure i can find a good plan to cover rest home costs. so yeah, i guess you could say HD sucks.

what do you want to say to us who are older?

as much as i appreciate the wisdom that comes with age. adults need to respect the decision to test or not to test. it is intensely personal and not for everyone. sometimes the best thing you can do is listen to these AR kids and realize just how much they have seen in such a short amount of time.

how can we support you?

support with your ears and listen to our needs.

  A Users Experience http://indigo.ie/~hdai/hopenews.html

Every person has their different view on Huntington's Disease so I wont try to explain it for them. But what I will do is explain how having a parent with HD affects my life and maybe somebody can relate to how I feel.

I first found out about Huntington's around one and a half years ago. My parents decided to tell my brother, sister and myself that dad had the disease. It wasnt long before both my younger siblings were in tears.
Me, I didnt know what to feel. At times I still don't. To put myself straight on what I was dealing with, I checked the medical dictionary. It defines Huntington's as "random twitching and general clumsiness, mood swings are inevitable, there is difficulty making decisions and memory loss". It also states that sufferers "commonly live 15 to 30 years and that no cure was available.
Right there and then I knew what it meant to me and how I felt. It meant that this disease would be tearing my family apart. It meant I'd be losing my dad. How did I feel? I felt like Eddie Jordan seeing his only chance of a podium finish being dashed as Trulli is knocked off the circuit by Coulthard angry, upset and the question of why? comes to mind. As you probably have guessed, I'm a Formula One fanatic.

Around the house I have more work to do so my dad can have more time to himself. When my friends call for me, the only reason I can give for not being able to come out is that I'm busy. That's fair enough. Still, there are times when I'm asked to go places when they know I'm not able to and they wonder why I'm not coming with them.

I'd love to tell my friends why I'm busy or can't come out, but only a few of them I can really trust and the others have problems of their own without having to worry about mine.

By now I've accepted that my dad has HD and there's a possibility that I have it also. I enjoy each day as it comes and take the best out of everything. I know that there are people my own age going through the same experience as I am, and the only thing I can say is that in future years, things can only get better!

Ashling, Aged 15
Other Resources:  HD Lighthouse http://hdlighthouse.org articles from young adults. Click on subject to be taken to that article.
  • An At-Risk Teenager's Views on the National HDSA Convention read HDSA 1998
  • Coping with Living With HD read  Coping
  • Lisa, At Risk for Huntington's Disease read Lisa
  • In-Vitro Fertilization read  IVF
  • Testing-Testing? One, two, three...read  Testing