Juvenile-HD
Physical & Occupational Therapy In HD

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Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
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Unified HD Rating Scale (UHDRS) Motor Section
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SECTION 1 - AT RISK
Age & Probability Chart
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Q&A On Risk of Inheriting JHD
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SECTION 2 - GENETIC TESTING
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Prenatal Testing-In General
o Genetic Testing Resources
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SECTION 3 - JHD
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
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Talking With Children About HD
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SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
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
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
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
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
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
Resources-Drinks/Shakes
-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
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-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
-Celexa/Luvox/Paxil/Prozac/Zoloft
-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
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- ALCOHOL/DRUGS
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
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
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
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
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
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
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK

INDEX Page

From the Huntington's Disease Society of America www.hdsa.org

Physical and Occupational Therapy for Huntington's Disease

Disclaimer
Statements and opinions in this book are not necessarily those of the Huntington's Disease Society of America, nor does HDSA promote, endorse, or recommend any treatment or therapy mentioned herein.  The reader should consult a physician or other appropriate health care professional concerning any advice, treatment or therapy set forth in this book

Contents  

1.  INTRODUCTION
    Understanding Huntington's Disease
    The motor disorder

2.  PHYSICAL THERAPY IN EARLY-STAGE HD
    Common motor deficits leading to falls  

3. PHYSICAL THERAPY IN MIDDLE-STAGE HD
    Common motor problems and strategies
    Choosing a wheelchair
    Strategies for improving cognitive functioning
 

4. PHYSICAL THERAPY IN LATE-STAGE HD  
    Avoiding restraints
 
    The sleeping environment and bedding

5. OCCUPATIONAL THERAPY IN EARLY-STAGE HD  
    Memory strategies
 
    Planning strategies
   
Concentration strategies  
    Safety at home  

6. OCCUPATIONAL THERAPY IN MIDDLE-STAGE HD  
    Eating  
    Hygiene
 
    Dressing
 

7. OCCUPATIONAL THERAPY IN LATE-STAGE HD
   
Contractures

8. CONCLUSION  

9. APPENDIX  
    How to locate an occupational therapist or physical therapist
 
    Product and further information

      When I met my first patient with Huntington's Disease (HD) nine years ago, I knew little about the disorder.  The lack of available information about physical therapy and HD meant hard work for both of us as together we evaluated his deficits and developed strategies to lessen their effects.  Now, many patients later, I remain in awe of the determination and perseverance that people with HD possess in their battle against the disease.  Therapeutic treatment can help them in this daily struggle.

   Most physical therapists (PT's) and occupational therapists (OT's) will go through their careers without ever treating a person with Huntington's Disease.  For those who are given the opportunity, however, this booklet will serve as a guide to help them develop an appropriate treatment plan.  Many of the suggested strategies and interventions can be performed by family members at home - without the assistance of a PT or OT.

   Therapeutic services can be delivered in a number of ways.  In the earlier stages, consultation with a PT and/or OT is often adequate to identify postural changes and early balance symptoms.  A home program can be established with follow-up visits to monitor progress.  Later, weekly sessions may be needed to assist with walking difficulties and to teach the person how to use adaptive equipment.

   As moving about in the community becomes more difficult, home visits through a home care agency may be beneficial.  During these visits the therapist can help to establish a safe home environment, suggest adaptive equipment, teach compensatory strategies, and provide caregiver education.  In the later stages, either at home or in a nursing facility, therapists can assist with proper seating equipment, daily living skills and preventive management.

Understanding Huntington's Disease

   HD is a progressive neurological disorder affecting cognition (thinking, judgment, memory), movement and emotional control.  The symptoms of HD are caused by the loss of cells in a part of the brain called the basal ganglia.  Symptoms appear gradually, usually in mid-life, and last 15 to 20 years after onset.  Although there are commonalities, there is no set pattern of symptoms and their severity can vary greatly from person to person.  For some people, involuntary movement may be pronounced from the beginning, while others may have little or none.  Some may experience severe emotional difficulties, while others do not.  Though the pattern and severity of the disease vary, the course of HD can be divided into three stages - early, middle, late - which will serve as the basis for discussions for treatment strategies.

The Motor Disorder  - The motor disorder in HD is characterized by the presence of involuntary movements and alterations in voluntary movement.

Involuntary Movements -  Involuntary movements may begin with akathisia, or motor restlessness, which is difficulty maintaining any one position, or a need for constant movement.  People have described this feeling as one of being "supercharged" all the time.  One person said it felt as if she just wanted to run for hours.

Dystonia  - is an abnormal, sustained posturing of a body part, typically the arms, head or trunk.  It can appear as an arching of the back or twisting of the neck to one side, both of which are held in those positions for several seconds.

   The most common involuntary movement is chorea.  This refers to rapid, irregular, involuntary jerking or twitching movements which may have either low or high amplitudes.  Chorea may manifest itself as finger flicking, shoulder shrugging or facial grimacing, or it may be much more pronounced, such as flailing of the arms and legs.

   It should be noted that while medication can help to reduce involuntary movements such as chorea, many people prefer to do without it because of its side effects.  Research has shown that chorea is not the primary disabling factor in the movement disorder, and in many cases can be left alone.  This is particularly important for therapists to be aware of since the first inclination is often to suppress the chorea.  An alternative to medication is to weight the limbs to decrease movement amplitude.  However, this tends to result in fatiguing of the muscle group and a decrease in motor ability.

Voluntary Movements

Voluntary movements may be altered by:

  • Bradykinesia, or slowed movement.  This is often evident in walking and in changes of position .

  • Impairments of modulation of force of movement. This is frequently evident in later stages when small movements are intended but result in large bursts of movement. For example, a person wishing to rise from a sitting position may find him/herself unintentionally vaulting out of a chair or bed.

  • Delayed initiation, or the inability to start a motor movement. The delay can last up to several seconds. This deficit can often be mistaken for lack of interest or lack of attention. It can be seen in a variety of instances, from answering a question to rising from a chair.

  • Delayed reaction to externally produced disturbances to balance. Uneven ground, sudden startling, or calling to a person from behind, can cause a fall since the ability to recover from this outside stimulus is slowed.

  • Incoordination of movement, or the alteration of rhythmical, repetitive movements. This is very obvious in activities such as walking, chewing and even breathing.

The Cognitive Disorder

   The cognitive disorder in HD is characterized by impaired memory and executive functions, and slowed thinking.  Memory is affected in the retrieval stage, that is, the person with HD has difficulty retrieving stored information.  However, storing new information can also be affected.

   Executive functions include organizing, prioritizing and regulating information.  Impairments in this are cause difficulties in judgment, problem solving ability, logical thinking and handling more than one task at a time.  Thought processes may also be slowed so that more time is required to answer questions and to complete routine tasks.

~~~

Go to above links to read the rest of this excellent paper.