Juvenile-HD

HOME

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
Attention-Perceptual/Unawareness Physician's Guide

INDEX Page

Chapter 4-Physicians Guide To The Management of HD
 
The Cognitive Disorder

Perceptual Problems

HD causes deficits in spatial perception. The mental manipulation of personal space is impaired, even early in the disease. For instance, the judgment of where the body is in relation to walls, corners or tables may be disturbed, resulting in falls and accidents.

Precautions might include carpeting the floors and removing furniture with sharp corners to the periphery of the room, where it will be out of the patient's path. Behavior problems reported by family members are often due to another kind of impaired perception, unawareness of changes due to HD, which can lead to challenges in providing care.

Unawareness

Denial is commonly considered a psychological inability to cope with distressing circumstances. We often see this in situations such as the loss of a loved one, a terminal disease, or a serious injury. This type of denial typically recedes over time as the individual begins to accept his losses.

Individuals with HD often suffer from a more recalcitrant lack of insight or self-awareness. They may be unable to recognize their own disabilities or evaluate their own behavior. This type of denial is thought to result from a disruption of the pathways between the frontal regions and the basal ganglia. It is sometimes called "organic denial," or anosognosia, and is a condition that may last a lifetime.

We recommend that "unawareness" be used to describe this type of denial in HD to distinguish it from the more familiar kind and to avoid thinking of patients with HD as suffering from a purely psychological problem.

Unawareness often plays a significant role in seemingly irrational behavior. At first unawareness may be beneficial because it keeps the individual motivated to try things and to avoid labelling himself. In this way it may prevent demoralization. On the other hand, unawareness may lead to anger and frustration when the individual cannot understand why he cannot work or live independently.

The HD patient with unawareness sometimes feels that people are unjustifiably keeping him away from activities that he could do, such as driving, working, or caring for children, and may attempt to do these things against the advice of family and friends. This type of unawareness can become dangerous.

Organic denial is also an issue for health professionals, friends, and family members, who may delay

TABLE 9: COPING STRATEGIES FOR UNAWARENESS

  • Do not make insight the central goal. A person may be able to talk about his problems without acknowledging having HD.
  • Unawareness will not always respond to interventions, and a person with HD may never seem to "accept" the disease.
  • Counseling may help someone with HD come to terms with the diagnosis but may have little impact on specific insight.
  • It may be helpful to develop a contract, even a formal written agreement, that includes incentives for compliance but "sidesteps" the awareness issues.
  • making the diagnosis or keep the diagnosis from the affected individual because they are concerned that he "cannot handle it."

    Some people interpret the unawareness as a sign that the individual does not want to know. We have not found that talking about HD to a person with unawareness will cause negative consequences.

    In our clinical experience, organic denial is not easily amenable to treatment or change. Nevertheless, there are different degrees of unawareness.

    It may be that the person can talk about her problems, but not acknowledge that she has HD. In such a case, one might try to address the problems while avoiding discussion of the diagnosis.

    Noncompliance with therapy or nursing care should not automatically be interpreted as intentional. It may be helpful to develop a contract that includes incentives for compliance. Denial can thus be sidestepped, while behavioral goals remain the same.

    For example, the goal may be to convince an unsafe driver to stop, rather than to accept the diagnosis, or acknowledge why he must stop driving.

    Attention

    There are many different types of attention. In persons with HD, simple attention often remains intact. In contrast, sustained or complex types of attention become impaired by HD. For instance, most persons with HD will experience difficulty with what is called "divided attention," or the capacity to do two things at once.

    For most people, divided attention is impaired when we are tired, sick, or stressed. In HD, divided attention is compromised most of the time, regardless of extra stress. Consequently, a person may complain that he can't "pay attention" as well as he used to.

    Divided attention is needed to drive a car while listening to the radio, talking to the kids in the back seat, or talking on the cell phone. When divided attention is impaired it is recommended that patients try to do only one thing at a time. For instance, an HD-affected person should turn off radios, television, and telephones, and limit conversations while cooking dinner.

    When swallowing becomes a problem, mealtime distractions should be minimized and the patient should concentrate on chewing and swallowing to limit choking.