Huntington's Disease Support Information
HD Specific Handbooks


Index~HD Search
Section 1 General Information
Section 2 HD Specific
Section 3 State Info
Section 4 Misc
Hunt-Dis Scholarship Fund
HD Specific Hand/Guide Books
Juvenile HD, Medical,  Family,  Therapy, Behavior, Caregiving and Late Stages
INSTRUCTIONS: Click on title or chapter to be taken to information
Juvenile Huntington's
The Diagnosis of HD in A Child: Symptoms of JHD, Genetic Testing, Risks of premature testing, etc.
    The Expected Course
    Assembling A Team of Care Providers
    Managing Your Own Emotions
    The Rest of the Family
JHD Info-Stanford Univ. 
Some great information from Sanford University's new HOPE program for Huntington's Disease
Medical  Information
Physician's Guide To HD
The Huntington's Disease Society of America published "A Physicians Guide to the Management of Huntington's Disease" Second Edition June 2000. This booklet is the standard of HD medical care and free a copy is available to any physician treating someone with Huntington's Disease. Copies are available for anyone else for $12.50. Contact Anita Mark-Paul, Extension 19, at the HDSA 1-800-345-4372.
Every family living with HD should have a copy of this very important book 
Explaining inheritance of the gene, CAG repeats in the huntingtin gene, Testing/Diagnostic, Predictive and  Prenatal Testing
Movement Disorder  (CHAPTER 3)
Explains chorea, dystonia, abnormal eye movements,  dysarthria, gait disturbance, and dysphagia, rigidity, spasticity  myodonus, tics, epliepsy, swallowing difficulties. nuitrition, dysarthia (swallowing) and falls.
Explains lack of disorganization, initiative, perservation, impulsivity, irritability and temper outbursts, unawareness, attention, speech and language, and learning and memory difficulties along with coping strategies for some of these symptoms.
Explains depression, suicidal thoughts, mania, obsessive-compulsive disorders, schizophrenia-like disorders, delirium, irritability, apathy, anxiety and sexual along with describing current methods of treatment in HD
Explains Driving, Smoking, Sleep Disorders, Incontinence, Disability and End of Life Issues in HD
Other Resources:
Joseph Jankovic, MD
Family Information
    The illness
    Difficulties of diagnosis
    Reactions to the diagnosis
    Planning for later stages of the illness
    Chromosomes and genes - units of inheritance
    HD - a dominant disorder
    Age and the changing risk
    Making Decisions
    First reactions
    Telling the sufferer
    Telling the children
    Looking to the future
    Facing the reality - a balanced view
    Learning that you are at risk
    Some common reactions
    Marrying someone at risk
    Whether or not to plan children
    Responsibility for a parent
    Other practical problems
Part I
        Jobs and income
        Care in the Community
        Sharing the care
        Needs of children
        Responsibility for relatives
        HD in children
        Respecting your own limits
Part II
        The later stages
        The sufferer at home
        Residential care
        Hope for the future
Therapy Information
 Understanding Huntington's Disease 
 The motor disorder
Common motor deficits leading to falls  
Common motor problems and strategies 
Choosing a wheelchair 
Strategies for improving cognitive functioning
Avoiding restraints
The sleeping environment and bedding
Memory strategies
Planning strategies
Concentration strategies  

Safety at home  
Behavior Information
Dr. Jane Paulsen
II. Why Difficult Behaviours Occur in Huntington Disease
A. How Does the Brain Contribute to Behaviour Changes?
...Understanding Anatomy and Related Behaviours 6
...Understanding Brain Communication and Circuitry
...Understanding the Role of the Caudate in the Brain
B. How Can the Environment Contribute to Behaviour Difficulties?
C. How Can Individual Factors Contribute to Behaviour
...Unique Personality
...Stage of Illness
...Safety and Self-Esteem
D. Other Health Factors
...Acute and/or Chronic Illness
...Food Reactions
...Physical Discomfort
...Undetected Visual or Hearing Impairments
...The Effects of Medications
III. General Approaches to Solving Behaviour Problems in HD
A. Guidelines to Problem Solving
B. Approaches to Good Communication
C. Environmental Concerns
D. Care for Caregivers
A. Communication
B. Memory
C. Executive Functions
....Apathy and Diminished Ability to Initiate
....Impulse Control .
....Frustration, Irritability, Anger, Temper Outbursts
....Denial, Unawareness
D. Depression
E. Anxiety
F. Psychosis: Hallucinations and Delusions
G. Sexuality
H. Sleep Disturbances
Other Information on Behavior:
Understanding Behavioral Changes-Dr. Chiu 
Although one of the earliest HD handbooks for families, written in 1989,
still has some good information for all HD families today.  Discussess: Behavioral Problems, Care, Goalsm, Melborne Care, Scapegoating, Brain Cells Consequences, Inhibition, 
Learning andFamily Physicians

You may also want read this Dr. Chiu article discussing quality of life in HD care: "We put quality of life as the main criteria for decision making regarding their lives. What makes for quality of life is worth doing. What detracts from quality of life in not worth doing." 27-Nov-01  A Dr. Chiu Treasure

Caregiving Information
The Caring guide has information on how the Family Dynamics in HD alter relationships.