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
Helpful Forms-Info

INDEX Page

 
 

Advanced Directives-Living Wills, Power of Attorney Etc.

Information, forms, checklists, descriptions, state specific information on all pertinent documents needed.  Click here: Documents

Caregiving Decision Making Tips

Caregiving decisions can be hard to make. They are often complicated, involving many different, sometimes conflicting, factors. Consequences can affect other peoples lives and health....usually people who are very important to you. They often involve unfamiliar, unexpected circumstances. And they almost always come with time pressures, emotional pressures, and stress

http://www.familycareamerica.com/lib/content.asp?contentID=220&BreadCrumbs=1000,1300&pageID=11300&tempFCA=33x2823000225

Caregivers Log

Use copies of this form to monitor daily changes and help with communication among care providers working in shifts.

http://www.familycareamerica.com/lib/printer_friendly.asp?contentID=851&tempFCA=33x2823000225

Conditions Questionaires/Info

Anxiety Questionnaire, Delirium Quick Recognition, Delusions Questionnaire, Depression Questionnaire, Disinhibited Behavior Questionnaire, Dyskinesia Self Evaluation Form, Hallucinations Questionnaire, Mood Swings Questionnaire, Sleep Questionnaire, Quality of Life survey.  Click here: Symptom Support 

Driving Assessment Checklist

If you are unsure about your loved ones ability to drive, this checklist can help. Click on title.

Emergency Info Form

In Case of An Emergency form-One form should be filled out for each member of your family. This can be copied onto word documents and personal information filled out and printed. Click on title

Information on sensitive decisions that need to be considered, things to help you, your family and loved one in the final stages of life. Click on title.

Estate Planning

Information, forms and tips to help you with estate planning, including Personal Papers, Insurance, Living Trusts, Wills, Conservatorship, Guardian, etc.  Click on title. 

Home Modifications-Home of the Future

From AARP universal designs for modifications, repairs or new building to make homes more accessible. www.aarp.org/universalhome/home.html   

Home Modifications-Bathrooms

Step by step descriptions and diagrams on how to modifiy a bathroom to be handicapped accessible. Click on title.

Home Modifications - Facts

A collection of commonly asked questions received by the National Resource Center for Supportive Housing and Home Modifications. These questions are dividied into topic categories for your convenience. Information on several topics including Bathing, Floors, Grab Bars, Hearing Impairment, Lifts, Ramps, Stair Glides, Toileting, and Assistive Technology
Click on title.

Home Modificiation - Funding Resources

State and Local Funding - Many states and localities provide special grants and loans to their residents for home. This site offers suggestions on how to find that funding. Click on title. 

Home Modificiation - Kitchens

Step by step descriptions and diagrams on how to modifiy a kitchen to be handicapped accessible. Click on title

Home Modifiction - Safety Checklist and Assessment Instrument

Excellent links to home modifications and checklists from the National Resource Center on Supportive Housing and Home Modifications
Click on tittle.

Home Modificiation - Stairs and Ramps

Step by step descriptions and diagrams on how to modifiy steps or add ramps to be handicapped accessible. Click on title.
 
Hospice
Locate a Hospice in any city/state at this website. To learn more about hospice care or to find a hospice in the United States call 1-800-658-8898, or search the NHPCO hospice database. Select a state you are interested in or type a provider name and then click search. The search will display a list of cities and counties in the specified state that are served by hospices.  http://www.nhpco.org/Directory/
 
Overview, checklist of questions, answers to questions, care in nursing homes, complaint form, myths, almost everything you want to know about a Hospice.  Click on title.
 

Medical Appointments-Record Changes To Discuss With Your Doctor

Use this form to keep track of your medical appointments, to make notes to discuss with your doctor. Click on title.

Medical History Chart-Making a Personal One

In addition to the doctors medical history chart, a personal health history is an excellent resource, as it provides a consolidated history of all medical care and conditions over a stated period of years. Doctors find this information especially useful, even critical, when prescribing drugs or preparing treatment plans. It can alert them to any complications that might exist based on previous conditions or medications. A sample chart to help you document your loved one's medical history.  Click on title.

Medication Form

List all prescribed medications as well as all over the counter medications, vitamins, or nutritional supplements. Attach this form to the "In Case of Emergency" form.  Click on title.

Medication - Weekly Chart (cross off after taking)

Here's a handy record to help keep track of what medicines to take every day, when to take them, and when he or she took them. Write name and date, starting on Sunday, at the top of the record. Click on title.

Personal File

A step by step guide to making a Personal file that contains all of the important information you want family to know about, including personal papers, end of life choices, living wills, health care surrogate, etc.  Click on Making A Personal File

Question Your Doctor

Where To Start-Questions To Ask Your Doctor. Click on title.

Sensitive Issues - Choices

Information on choices, care options, hospices, genetic counceling, Handbook for Mortails/Guidance for People Facing A Serious Illness, Long Term Care, Medicare/Medicaid, Nursing Homes, Caregiver resources. Go to middle through end of page. From Our Final Journey, click here: INDEX Page