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
Articles-Resources

INDEX Page

Articles
 
Caregiver Grief ~Article - Deals with ongoing loss caregivers experience.  
 
Common Bonds of Caregiving - This article speaks for all caregivers and poignantly expresses the feelings each of us carry with us daily.  It is something you might consider sharing with your family and friends.
 
Let's Talk About It - an excellent article on how to approach sensitive subjects about living wills, end of life issues with your loved one.

Because We Care - A Guide for People Who Care  An online resource guide for the growing number of Americans who are caring for an older family member, adult child with disabilities, or older friend.  This Guide provides information and a range of suggestions to make caregiving easier and more successful--whether you are the caregiver or the person who ensures that your family member or friend receives the best possible care from others.  One article is "How Can I Make My Special Needs Childs Future Secure?

 
 
Our Final Journey website has several resources for family planning that I'm copying here.  After the 2002 convention I plan on consolidating several HD websites together, however the Our Final Journey will be kept separate. 
 
You can click on the section title to be taken to that information.
 
What Is Estate Planning?
What Is An Estate?
Who Should Have An Estate Plan?
When should I start my Estate Plan?
Where can I find some examples?
Should I use a lawyer?
 
Getting Started
-Getting Organized: Important Planning Steps
-Forms
........Important Papers
........Personal Records
........Valuables
Estate Planning Resources
 
Definition
Resources
-Legal Facts
-Do You Need A Lawyer?
-Why You May Not Need One
-Tax Saving AB Trusts
 
Definitioins
-What's the Difference: Wills & Living Trusts?
-Crash Course in Wills & Trusts
-Disinheriting Family Members
-Disposition of Property With or Without A Will
-Ethical Wills- Preserving your legacy of values
-Executors: What You Need To Know
-Final Arrangements why put this in your will?
-Making a No Frills Will
-Making Your Will Legal
-Special Property Rules for Marriend People
-What You Can't Do In Your Will
Children:
-Choosing A Guardian
-Leaving Property to Young Children
Resources
 
What is Conservatorship?
What Is A Guardianship
 
-Conservator~Guardianship
-FAQS (facts)
-Standards
Definition
Resources
-Ways To Avoid
-Living Trusts-How To Avoid Probate
-Using Roth IRA's To Avoid Probate
Books
 
Disability Insurance
Good Care; Can You Afford It?
Is Home Care An Option?
Life Insurance Options
Long Term Care
Resources
Q&A's
-Forms
.....HMO, PPO worksheets
....Best Insurance Buy worksheet
....Checklist on deciding health insurance
 
Americans With Disability (ADA) FAQS
Disability Discrimation
Family Medical Leave
-Medical Certificate
-Employer Notice
Flex Working Hours
-How To Get It
-Sample Polices & Forms
-Ways of working it
Illegal Reasons For Firing
Losing or Leaving A Job
Of Genes and Pink Slips: Genetic Testing Goes To Work
Social Security
-More Resources
 
Calculating Your Net Worth
Credit Reports
Credit Scores
Daily Money Management Services
Debit Cards
Evaluating Cash Flow
FAQS On Debt & Bankruptcy
Financial Planning
Food Stamps
Home Loans
Planning Your Spending
Repayment FAQS
Reverse Mortgages
-Loan Calculator
-Get the Booklet "Home Made Money"
Forms
-Bankruptcy Letter before filing
-Credit Repair: Letter disputing charges
-Notice to Creditors
-More Resources
 
Unfortunately some families are faced with divorce issues in order to receive proper care for a loved one who is seriously ill or the changes in the marriage caused by the illness drive one partner to seek a divorce.  This section offers numerous resources in divorce planning and requirements.
 
State, Federal and International Laws, Supreme Court Cases, Q&A's, and Resources on the hiring of an attorney.
 
Advanced Directives
-Forms and Checklists to help you get started
-Advance Medical Directives
-Appointing A Health Care Agent
-Being A Health Care Agent
-Legal considerations for Healthcare Directives
-Power of Attorney for Finances
-Durable Power of Attorney
-State Specific Information & Forms
Funeral Planning
-A planner
-Checklists & Forms
-VA information
 
A simple notebook containing this information can be a valuable gift to your family. Contains many forms, articles and suggestion for things to be included in a personal file.
 
Personal Emergency Information Form-A copy of this form, and any attachments, should be visible on your refrigerator, a copy put in the glove compartment of all vehicles, one provided to school for child's records etc. One should be filled out for each member of your family!
 
Planning advice for Special Needs people, plus other disaster and safety information from the American Red Cross.
 
Medication and OTC (over the counter) Form to fill out and attach to Personal Emergency Information form and provide to your primary care physican.
 
Where To Start-Questions To Ask Your Doctor
 
Blank form letters to use submitting information and questions to your physician.
  • Medication List: Request doctor manage avoid any potential serious side-
  • Top 3 Things To Discuss On Your Next Appointment
  • List of problems or symptoms you want to discuss
  • List of non-critical questions to discuss
  • Personal Health History form for your medical records
Forms, checklists or tips to assist you in daily care or tips and other information to help in daily care, planning or products such as home modifications, medical alert bracelet, etc.
 
Information for the whole family on living and helping someone who is terminal ill covering topics such as activities, DRN's, end of life, getting help/good planning, Medicare/Medicaid, pallative care and emotional challenges.
 
Information, support and suggestions to help the person who is ill, such as Bill of Rights for Terminally Ill, Creating Your Own Funeral  & Memorial, Decisions, Depression and Emotional Challenges, Important Conversations, and other related topics.
 
Assessment worksheets, suggestions and guidelines to help the caregiver, information on assisted living, nursing homes, respite care, logs, hints on hiring and getting help, talking to children, handling crises, etc.
 
Help for parents of a seriously ill child such as coping, improving end of life care, respite programs, tips for teachers, nurses, doctors and parents from children.
Links to information to help young people dealing with emotions and feeling when living with a loved one who is seriously ill.
 
Information on Assisted Living facilities, Physician's Role in long term care, Medicare, Nursing Homes, Tips for Patients & Families,  FAQS, Laws, Mobility Issues, Overmedication symptoms, physical restraints, pressure sores, removing patients, what doctor's should do, etc.
Overview of Hospice services, checklist of questions to ask Hospice, answers to your Hospice questions, Hospice care in nursing homes, Hospice complaint form, consideration, consumers guide to selecting a
Hospice,  Find a Hospice, Hospice guidelines for determining prognosis, Hospice Volunteers & The family, what they can and cannot do, Medicaid and Medicare Hospice benefits, When to choose a Hospice.
 
Questionnaires to help determine levels of anxiety, behavorial issues, delusions, depression, delirium, dyskinesia, dystonia, hallucinations, managing symptoms, pain management, quality of life survey,
sleep disorders, etc.
 
Article with helpful hints and suggestions for managing behavoir problems such as anger, agitation,
paranoia, incontinence, traveling,bathing, etc.
 
Article to help caregiver and others to understand what the person who is ill is feeling and how you can help.
 
Information on antidepressants, controlling drugs plus links to websites to look up medications and interactions
with over the counter products.
 
Links to several excellent resources on finding the right assistive technology to help extend a persons
quality of life.
 
Article to help resolve conflicts in a marriage when one person is caregiver to the other
 
THIS SECTION IS BEING REORGANIZED
The final stages, talking about choices
  Artificial Feeding
  Ethical Issues in Hydration and Nutrition
  Fact Sheets
  Final Days-The Dying Experience
  Food, constipation and feeding tubes
  Helping a friend who is dying, guidance for friends and coworkers
  Hospice and Pallative care
  Nutritional support and hydration
  Swallowing Problems
 
When the end is near
  Freedom to choose at life's end
  Choosing how our last days are spent
  Constipation
  Comforting a dying person
  Death-what you can expect as the time nears
  End of life decisions and the person with dementia
  From your hands to God's arms, saying goodbye
  General comfort at end, what you can do
  Guidelines for family members and volunteers
  Keeping Watch, readings, prayers and spiritual resources
  Lack of appetite
  Massage therapy
  Signs and symptoms of approaching death
  Sleeping
  The Value of touch
 
When someone dies
  What to do, a short list
  Phone Calls
  Benefits
  When no prearrangements have been made
 
Grief and Support
  A guide to grief
  Affirmations
  Bereavement
  Children - serveral excellent sources
  Coping with Grief and Loss
  Healing after loss
  How to help someone grieving
  Ideas for writing/journaling
 
Children & Teenager - information to help those grieving
Holidays - things to help make it through them
Spiritual needs
Suicide
 
Resources, checklists, forms for planning purpose.  Articles on support, legal advice, how to write thank you notes, etc.
 
This is a new section to move information from other pages and add new resources
 
Excellent list of things you can do to help a family living with a terminal illness.  Something to give to your friends who ask how they can help!