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HD Specific Hand/Guide Books
Juvenile HD, Medical, Family, Therapy, Behavior, Caregiving and Late Stages
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INSTRUCTIONS: Click on title or chapter to be taken to information |
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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
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
Prediction
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
Grieving
Hope for the future
Therapy Information
INTRODUCTION Understanding Huntington's Disease
The motor disorder
Common motor problems and strategies
Choosing a wheelchair
Strategies for improving cognitive functioning
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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?
...Routine
...Distractions
C. How Can Individual Factors Contribute to Behaviour
...Unique Personality
...Stage of Illness
...Loss
...Safety and Self-Esteem
D. Other Health Factors
...Acute and/or Chronic Illness
...Food Reactions
...Dehydration
...Fatigue
...Physical Discomfort
...Undetected Visual or Hearing Impairments
...The Effects of Medications
A. Communication
B. Memory
C. Executive Functions
....Apathy and Diminished Ability to Initiate
....Organization
....Impulse Control .
....Frustration, Irritability, Anger, Temper Outbursts
....Denial, Unawareness
....Repetition/Perseveration
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.
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