Juvenile-HD

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INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
Facing HD~Family Handbook
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
Genetic Testing for HD
Genetic Counseling-In General
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
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
Communication Problems

INDEX Page

HD~Communications
 
Chapter 3-The Physican's Guide to Management of HD
Movement Disorders
 
DYSARTHRIA
 
Dysarthria, a difficulty with the physical production of speech, results largely from impairment of voluntary movement. Speech becomes slurred, dysrhythmic, variable in volume due to inconsistent breath support, and increasingly difficult to understand.
 
TABLE 5: COPING STRATEGIES FOR COMMUNICATION

  • Allow the person enough time to answer questions.
  • Offer cues and prompts to get the person started.
  • Give choices. For example, rather than asking
    "what do you want for dinner?" ask "do you want
    hamburgers or meatloaf?"
  • Break the task or instructions down into small steps.
  • If the person is confused, speak more simply
    and use visual cues to demonstrate what you are saying.
  • Ask the person to repeat phrases you did not under-
    stand, or spell the words.
  • Alphabet boards, yes-no cards, or other communica-
    tion devices may be helpful.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Furthermore, just as patients do not always appreciate the presence or degree of chorea, some patients do not seem to be aware of distortions in their speech. For others, articulation is a constant source of frustration.
 
No medications are known to be helpful, and dysarthria may be worsened by agents which suppress chorea. However, several interventions may enhance communication in these patients. The listener must do everything possible to promote successful communication, beginning with allowing enough time.
 
Many HD patients thought to be incapable of communication can be understood if the listener is patient enough. Patients may need to be moved to a quieter, calmer environment, and urged to speak slowly.
 
Patients can be asked to spell difficult to understand words. A communication board can also be useful in some cases.
 
A speech-language pathologist may be able to provide additional insights and management strategies.
 
Dysarthria may be compounded by cognitive problems found in HD, such as word-finding difficulty, difficulty initiating speech, or difficulty completing a sentence. Even those with severe cognitive impairments often respond to cues, such as asidng for the size, shape or color of an object. Even severely impaired patients may be able to respond accurately to a series of yes and no questions.
 
If unsuccessful attempts at communication become very frustrating, it may be better to take a break. The desire for social interaction generally remains, even in those with advanced HD, so strategies for communication should be a priority.

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Chapter 4-The Physician's Guide to Management of HD

Cognitive

Language

Communication, or the transfer of information from one person to another, requires a complex integration of thought, muscle control, and breathing. HD can impair all three of these functions. There are two main aspects to communication: getting the information IN (understanding) and getting the information OUT (talking). Both of these aspects can be impaired by HD, making communication a difficult task.

The most prominent language difficulties in people with HD are (1) speaking clearly (articulation), (2) starting conversation (initiation), and (3) organizing what's coming in and going out.

Misarticulation

Motor speech impairments are quite typical in HD. Persons with HD have even been accused of being drunk due to their sluggish speech articulation. A lack of motor coordination causes difficulties with enunciation and the breath control underlying speech.

Impaired Initiation of Speech

Word finding is often impaired, while knowledge of vocabulary is retained, because it takes the brain much longer to search and retrieve the desired object. Listeners sometimes fail to wait long enough for the brain to do its job.

In addition to speed limitations, the brain fails to regulate the sequence and amount of traveling information, resulting in impairments in starting and stopping.

When language initiation is compromised by HD, techniques such as phrasing questions with alternate choice answers (e.g., yes or no; lasagna or spaghetti) may help someone get started or retrieve the desired response.

Disorganization of Language Content

In contrast to the basic impairments in language output, the basic capacity to understand language remains relatively intact in HD. Even in later stages of the disease, language comprehension may remain when the ability to speak is significantly diminished. This fact is important to communicate to family members, staff at care facilities and other professionals involved.

Even if a patient cannot express herself, it is likely that she can understand what is being said. Difficulties with word usage are rare in persons with HD, as are frank aphasia or impairments in semantic memory. The trouble that occurs in persons with HD is an inability to organize the outgoing and incoming language, resulting in miscommunication.

To aid the person with HD in organizing language output and input it is best to rely on short simple sentences and to assess understanding frequently during important conversations.