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
Home Emergency Preparations

INDEX Page

Most of this is generic information we all know, but may forget in an emergency.  It's good to have posted somewhere.
 
Most states have an evacuation procedure for evacuating people who are unable to get out of the house themselves or with assistance.  Check with your local fire station or city planning department and ask what form(s) you need to have your doctor (or Hospice) complete so that they will help you evacuate someone to a safe facility during a natural disaster or emergency.
 

TO PREPARE FOR AND PREVENT HOME EMERGENCIES

*Ask your local emergency management office or Red Cross chapter what potential disasters you should be prepared for in your area.

*Ask how you would be warned if an emergency were to occur.

*Ask about special assistance for people with disabilities and see if you can register with the fire department or emergency management office so they'll be aware of any special needs you have.

*Ask your children's teachers and caregivers about emergency plans at schools and day-care centers.

*Post emergency numbers near your telephones. Include a number for the nearest Poison Control Center.

*Teach your children how and when to use those numbers to call for help.

*Make sure you have adequate insurance coverage.

*Discuss emergency procedures with family members and, if you have one, your personal care attendant.

*If you use a personal care attendant from an agency, ask the agency how and where you can receive care in the event of an evacuation.

*Consider wearing a medical alert tag or bracelet to identify your disability.

*If you live alone, arrange for a relative or neighbor to check on you in an emergency.

*Determine what your alternate shelter will be in the event of a disaster such as a tornado or earthquake.

*Choose two places for your family to meet in case of an emergency. One should be right outside your house in case of fire. The other should be outside your neighborhood in case a disaster prevents you from returning home.

*In case of power outage, know how to connect or start a back-up power supply for essential medical equipment.

*Practice how to escape from your home if an emergency happens. Draw a floor plan showing two escape routes from each room.

*Wheelchair users should have more than one wheelchair-accessible exit from the home in case the primary exit becomes blocked.

*Learn how to turn off the water, gas and electricity at main valves or switches.

*Assemble a Disaster Supplies Kit, including such items as water, non-perishable food, change of clothing, blankets, first aid kit and flashlights, plus extra car keys, credit cards and wheelchair batteries.

*Keep family records in a watertight, fireproof container.

*Listen to a battery-operated radio for emergency information such as the location of emergency shelters.

*Check for potential hazard spots in the home. Ordinary items such as bookcases or hanging pictures or lights can cause fires or block escape routes during an emergency.

*Children can get lead poisoning from any number of sources, including peeling paint and some kinds of miniblinds. (Call the National Lead Information Clearinghouse at 1-800-424- LEAD for more information.)

*Store potentially harmful products, including medicines and cleaning products, in their original containers, not in anything resembling a soda bottle or drinking glass. Keep them away from food.

*Throw out any old and out-of-date prescriptions. The chemicals inside medicines can change for the worse over time.

*When choosing toys, look for labels that give age recommendations and follow those guidelines.

*Keep children away from open windows, and don't depend on screens to prevent children from falling out.

*Never leave a child unsupervised in a pool. If you have a pool, learn CPR.

*Completely fence your pool, with latches that are out of reach of young children so they can't gain access unsupervised.

*If you smell gas in the house, leave at once without using the phone or light switches, and call for help.

*Make sure you know how to use your fire extinguisher, and test and recharge it according to manufacturer's instructions.

*Follow the manufacturer's instructions on where and how to use gas space heaters. Unvented heaters should not be used in small enclosed areas, especially bedrooms, because of the potential for carbon monoxide poisoning.

*Operate portable electric heaters away from combustible materials, and try to avoid hooking them up with extension cords.

*Roll up or fasten long, loose clothing while cooking.

*Don't smoke in bed.

*Don't try to fight a fire. Get out fast and call for help.

*Flammable liquids such as gasoline should be stored outside of the house and away from heating sources.

*Install smoke detectors, at least one on every floor of your home. Clean and test them at least once a month and change the batteries at least once a year.

Did you read the related article, "A Call for Safety -- Being Prepared and Getting Help When Emergencies Strike"?

Source:  Muscular Dystrophy Association http://www.mdausa.org/