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
Emotional Behavior Links
o Emotional Support Resources
Helping Child Deal With Death
o Grief Addtional Resources
ADD & Teens
Conduct Disorders
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
-Haldol/HD Patient Experiences


UPDATE 10/00

Two new medications have been found to help treat some of the symptoms of HD which you might want to discuss with your doctor.  These are Olanzapine and Valproate.  You can read about what studies, to date, have shown in HD:

The New England Journal of Medicine -- September 28, 2000 -- Vol. 343, No. 13 Improvement of Huntington's Disease with Olanzapine and Valproate http://www.nejm.org/content/2000/0343/0013/0973.asp

Here is a testimony from a mother with 2 sons with HD made on 10/27/00:

Gary began taking Olanzapine about 2 weeks ago and there was an almost immediate improvement. His head and hands had been moving at such a fast speed that it was difficult for him to enjoy a movie or eat.  I will not say there has been a miracle, but a definite decrease in chorea.  The drug is quite expensive. 
NOTE: The following was taken from several messages from families on Hunt-Dis over a the period of a few years. Their names have been removed.  Today, 2002, families just learning they have HD who live in rural areas all over the US are still having primary care physicians prescribe Haldol for HD,  no matter what their symptoms are.
Families have found that doctors who are  not experienced in HD have a higher tendency to prescribe Haldol since, in early medical references on HD, it was the only drug mentioned.  Current HD literature discourages the use of Haldol except in certain circumstances.

1.      My HD wife has had a very bad couple of months and much to my
dismay we've ended up using Haldol for the second time since her hd diagnosis . Her initial dosage was 2 milligrams a day, but within 60 days we were up to 10. The difference was scary.

We have recently changed from Haldol to Resperidone and there has
been a real improvement.
With Haldol, her appetite disappeared which was catastrophic in itself. Also, her dosage was gradually increased over time rather than doubled on the spot.  Her posture became extremely rigid from the drug.
We are now in the middle of the changeover to Resperidone and her appetite is definitely returning, as well as her communication skills. The rigidity is still present, but I'm hoping this is a result of the Haldol and will wear off as the drug leaves her body. I think her ability to swallow was further impaired with Haldol.

2.    Written summer of 1996:  My father was diagnosed with HD last summer of  HD and has been on Haldol since about that time.  I would also appreciate any information you may have on the drug.  He is a walking zombie most of the time!  He has lost all interest in life. All he does is pace through the house and nap.  Nothing else gets his attention.

3.    I insisted that my wife be taken off Haldol and finally prevailed . I

read the doc's notes her medical records which read something like this:
"I have examined the patient and there are no signs of TD. The lip smacking and other symptoms the husband complains of are the natural progression of HD and in no way related to the minuscule prescription of Haldol.  I have explained this to the husband, and the husband
understands that treatment will not be based of something he read read on the internet...."

A few days later, my wife was taken off Haldol. For a while the TD became worse. I had learned that Haldol can "mask the severity of it's side effects". 
After a week the TD decreased and my wife could eat more. In a month the TD was gone.  No lip smacking, grimacing or puffing. My wife is now taking valium and a supplement,  her quality of life is very much improved.  
From my view, Haldol put my wife in hell.  Haldol was discontinued
and I got her back. To me it is evil to prescribe a drug that can mimic and make worse the disease it is treating.

4.     My husband was given Haldol the day he was diagnosed 7/'89...within a months time he couldn't drive, he began having panic attacks, became very short tempered and looking back....very depressed.  Within 1 1/2 months he was rated at 100% disabled by the military.
We moved to (city) and he was placed in a nursing home by Jan.'90. At
time he was having a lot of problems brushing his teeth, bathing, putting on his clothes and was unable to really think clearly.  The panic attacks got worse and he was so angry and frustrated.  Every time he had an outburst...up when his medication.  The benifit last at most 2 to 3 weeks. Then the cycle would start again.

In April '96 he was transferred a military base.  The Dr.s there took the risk and began to lower his haldol. At the same time they addressed his depression and they looked at his G.I trac and found that he had a very very irratated esophogus, and treated for that.
Within  a week he went from being almost bedbound to riding a stationary bike, talking, laughing and EATING! He has done so much better since being treated for depression in the six months that it took to lower the haldol to 5 mg.  They are now talking about lowering his meds again. Cross your fingers.

5.    3/97:  My wife had mild chorea.  She could walk and feed her self
with difficulty. Her attitude was she didn't need help. Her independence and chorea was mistaken as aggression.  
Contrary to my wifes wishes, I agreed with the nursing home charge nurse that she should be on  Haldol.  Just a very small 2mg. 3x a day. It seemed to work wonders. But now she had to be fed and she was in diapers.  Her speech was very slurred.
On one visit, she held my hand and crying she said  "I know I Huntington's." She had denied that for ten years. After a couple of months I saw a subdued, defeated and suicidal person.
My wifes  lips would sort of lock shut and she would try to control them by puffing her cheeks. Her tongue would protrude and she would whip her head about to control that. She felt her face was being pulled off.

After researching Haldol and talking to other HD families,  I demanded the nursing home take my wife off Haldol.  Her doc gave me notice that he would quit.  The nursing home said I would have to take her home.  The information I had gathered helped me convince the nurses and docs with compelling authority. The doc and nurses backed down. I had to agree that my wife would get 2mg 3x a day of Valium.
Today is a great day!  I have my wife back.  She feels a little drunk but I can easily understand her. She is sleeping and eating well.  She can sit up and stand up unaided. We have a deal. She said "Come visit me every day soI can hang on until this fu***** disease is cured."  It's a deal babe.

6.     Just wanted to let you know my experience with this drug. My father
was starting to decline rapidly and Haldol was the only drug I had heard was used for treatment so I asked the doctor to perscribe it for my father.
Boy have I never regetted such a descision before!   It basically drugged him out to nah-nah land. He was on the lowest possible dosage and for two weeks it turned him into a zombie. A complete vacant look in the eyes, stopped talking, slept most of the time, basically had no clue to what was going on around him. It scared my mom so bad that now she refuses to give him any such type of medication at all.

7.    My wife has been taking haldol for five years with no ill effects.
She started taking 1mg tablets 2 or times a day. She is currently taking 2mg tablets 3 or 4 times a day. She says that they help control her movements.

8.    My daughter was diagnosed with juvenile HD in 1983-84 time frame, was given a prescription of Haldol to take, told the disease was terminal and the neurologist couldn't help her, and to come back when she got worse.  
After a few days on the Haldol, she became totally lethargic, slept almost all of the time and was depressed.   By the end of that week she said "Mom, I hate this drug and am never taking it again.....I'd rather live with HD".
Since she was on Haldol a week or slightly less, it only took a few days for its affects to wear off and she became her normal, happy, self again.
(Jean Miller about Kelly)