Juvenile-HD

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JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
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Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
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
HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
JHD Resources
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
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Bradykinesia
Caring Tips
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Chorea
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Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
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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
Communication Strategies For HD~Jeff Searle

INDEX Page

Communication Strategies for those with Huntington's disease


Jeff Searle, MS JSEARL@kumc.edu

Department of Hearing and Speech
Kansas University Medical Center

Huntington's disease affects many skills which are necessary for effective communication. Disturbances of speech production, or the mechanics of speaking, include:

  • impaired respiration for speaking
  • hoarse and strained vocal quality
  • inappropriate loudness and rate
  • imprecise articulation
Cognitive language skills, or the thought process we need in order to formulate what we want to say, are also affected by the disease. Difficulties include such things as:

  • initiating conversations
  • spontaneity in communication
  • putting thoughts into words
  • a reduced number of words available to the person
  • limited ability to respond within a conversation
  • understanding complex information
  • slow response time
  • impaired skills in reading and writing, ranging from physical to comprehension difficulties.
Persons with HD also have problems:

  • learning new information and new skills
  • reduced short term memory skills
  • poor attention and concentration abilities
  • lack of ability to organize, reason and problem solve.
Because Huntington's Disease is a degenerative brain disorder, these difficulties occur randomly as the disease progresses. This unpredictability can be extremely frustrating for the person. For example, they may make a request clearly at one moment but have tremendous difficulty articulating the same request only a few seconds later.

As a caregiver, it is important to understand that the person has no control over this; they are not being stubborn or making a conscious choice not to remember or repeat a task. It is the degenerative unpredictable nature of Huntington's disease that is the root of the problem.

Strategies for Communication

The principal guide-line in achieving effective communication is for the listener to consciously accept the responsibility for the conversation exchange. Because of the many deficits which frequently occur, the person with HD often needs to rely on external cues and guidance from the listener to achieve communication. It is also important to realize that while you accept the responsibility for the exchange, you must not control the conversation.

When working with a person with Huntington's disease who has communication difficulties, it is recommended that you speak with a speech/language pathologist to help you implement, monitor and adjust the following strategies:

  • Speak Slowly
  • Repeat or Re-phrase the message
  • Simplify the Message-Offer Cues
  • Try to Gain Topic Knowledge
  • Spell Part of the Message
  • Use Yes/No Questions
  • Refocus Person on Topic
  • Monitor Behavior and Provide Feedback
Some additional strategies are:

  • Provide a Predictable Environment
  • Allow Adequate Time for
  • Communication
  • Reduce Distractions
  • Use Communication Aids
  • Monitor Listening and Attending ability
  • Provide and Ask for Feedback

Strategies for Communication During Advanced Stages of Disease

An individual in the advanced stages of Huntington's disease may well be non-verbal, yet interacting with another human being may be the only connection the person has with his/her environment. One of the biggest mistakes you can make is to assume that because a person has lost the ability to speak they have also lost the ability to understand. We know that persons in the later stages of the disease have a high degree of comprehension of ordinary conversation, therefore, maintaining communication at any level during this stage is extremely important .The following strategies will help you in your efforts:
  • Get to Know the Person
  • Keep the Person Informed
  • Be Innovative & Perceptive
  • Establish a Routine for Care
  • Recognize and Use Gestures and Facial Expressions as Communication tools
  • Inform Others of Your Strategies
Individuals in the advanced stages of the Disease still have much to share. It is the caregivers' responsibility to see that non-verbal persons remain in touch with their environment and those around them. It can make an enormous difference to that person's quality of life if they feel connected and affirmed as an individual.

 
Source: Department of Neurology at the Kansas University Medical Center