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Huntington's Disease
Specific Hand/Guide Books |
Juvenile
 JHD
Handbook-Chapter 1
The Diagnosis of HD in A Child: Symptoms of JHD, Genetic Testing, Risks of premature
testing, etc.
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Medical Information
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
Movement Disorder in HD (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.
Cognitive Changes in HD (CHAPTER 4)
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.
Psychiatric Disorder (CHAPTER 5)
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
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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 RELATED INFORMATION:
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Understanding Behavioral-Dr. Edmond Chiu
Although one of the earliest HD handbooks for families, written in 1989,
still has some good information for families today.
Also you may 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
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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
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Caregiving Information
The Caring guide has information on how the Family Dynamics in HD alter relationships.
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Therapy Information
INTRODUCTION Understanding
Huntington's Disease
The motor disorder
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