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Huntington's Disease Caregiving

HD Guidebooks
Home
Index
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Cargiver~Knowledge
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
HD Guidebooks
Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing/Diet
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
Feeding Tube Resources
Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
Personality Issues
Symptoms
Legal Issues
Disability Issues
At Home Care
Outside Care
Caregiver Tips
Caregiver Support
HD Facts
Helpful Forms-Download
Personal Articles/Stories
Miller Messages
HD Links
Fix It-R-Us?
How-To Tips
Have An HD Question?
Beautiful Memories
Caregiver's Chat Room
HD Caregiver Newsletter
Daily Humor & Health News
Dreams & Signs (Fun Stuff)
Share A Link
Send An HD Greeting Card
Location Map
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INSTRUCTIONS: Click on title or chapter to be taken to information

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.
 
 JHD Info-Stanford Univ. 
Some great information from Sanford University's new HOPE program for Huntington's
Disease

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 
 
 Genetic Counseling & Testing For HD (CHAPTER 2)
    Explaining inheritance of the gene, CAG repeats in the                 huntingtin gene, Testing/Diagnostic, Predictive and                     Prenatal Testing
 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
 Other Issues In HD (CHAPTER 6)
    Explains Driving, Smoking, Sleep Disorders, Incontinence,             Disability and End of Life Issues in HD

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
 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
....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
 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
 

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
 PHYSICAL THERAPY IN EARLY-STAGE HD
    Common motor deficits leading to falls  
 PHYSICAL THERAPY IN MIDDLE-STAGE HD
    Common motor problems and strategies
    Choosing a wheelchair
    Strategies for improving cognitive functioning
  
 PHYSICAL THERAPY IN LATE-STAGE HD  
   
Avoiding restraints
  
   The sleeping environment and bedding
 OCCUPATIONAL THERAPY IN EARLY-STAGE HD  
    Memory strategies
 
    Planning strategies
   
Concentration strategies  

    Safety at home  
 OCCUPATIONAL THERAPY IN MIDDLE-STAGE HD  
     Eating  
    Hygiene
 
    Dressing
  
 APPENDIX  
Late Stages Information