Juvenile-HD
At-Risk Checklist

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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

 
Huntington's Disease
At-Risk Preparation Checklist

Written by Phil Hardt

Many who are at-risk ask me to recommend how to prepare far the 50% chance that they will become symptomatic with HD. My simple answer is, prepare like you are going to get it and live like you will not! By doing this, you are in no
way admitting that you will get HD, you are simply being proactive by minimizing the financial and emotional damage that can result from HD if you are not adequately prepared. A dear friend said, This is not your fathers HD. It is out
of the closet, in your face, here and now."

We can no longer bury out heads in the sand and hope for a better day- WE must take responsibility for that day NOW for ourselves and for our loved ones. I am recommending some difficult changes NOW because I know all too well that if you procrastinate, and HD begins adversely affecting your insight, emotions and judgment, you may not see the need for change and you could end up lost and
unprepared. I wish with all my heart that you were not at-risk, but you are, so lets look it right in the face.

The following are common sense stepsto protect you and your family-just in case:

  
Sign up for short-term (STD) and long-term disability (LTD) insurance with your employer. Most companies offer open enrollment times when you can add or delete coverage with no questions asked. Then, if you can no longer work because or ANY disability, including HD, you will continue receiving the same amount of money as when you were working full-time

   Sign up for the maximum amount of life insurance possible without having to show proof of insurability with your employer. 
 
   Add two extra riders on to your life  insurance policy which usually do not cost extra:
 
1) Childrens Rider:  provides  $10,000 coverage per child, which they can convert at age l8 to their own $50,000 policy WITHOUT showing proof of insurability. If you are HD positive, your children are then at risk and they may not be able to get their own policy.

2) An Accelerated Benefits Rider:  allows you to use up to 50% of
the face value of your policy to pay for nursing home care, if necessary.

   Stay with you current employer if you are already tenured, or if you have 10 years of service before becoming disabled, AND if you are covered by STD and LTD  you will continue your current medical, dental, vision and mental health benefits, at the same amounts as you are currently paying, for as long as you are disabled. In addition, you will continue accruing service time towards retirement as long as you are disabled.

  
Obtain as much education and or marketable trade skills as possible so you can work for a company which offers group benefits. Group benefits are usually less expensive and you do not have to show proof of insurability" when when signing up for the policy.. 
 
   Encourage your spouse or partner to complete their education also. If something happens to you and they must work, he/she will be able to find a nicer and better paying job if they are prepared. 
 
   If you are self-employed, these types of insurances may be unaffordable
because of the cost and possible requirements to show proof of insurability.
If you indicate on your (insurance) application that there is HD in your family you are likely to either be denied insurance or offered a policy with extremely expensive monthly premiums. On the other hand, if you do not answer all questions honestly, and this is discovered, the insurers can void your coverage. I personally had to bite the bullet and work for a large company when I would have much preferred to work for myself. But now I am so thankful because my family does not have to sacrifice- they are taken care of. It is well worth the personal sacrifice- and you can follow your dream on your own time. 
 
   Get your financial affairs in order by creating a Last Will and Testament, a family trust (to avoid money being held in probate for the war after your death) and a Durable Power of Attorney (to assign the individual who will manage your financial affairs). These are difficult issues, but you cannot wait because once the softer signs of HD affect your thought process, you may not want to complete these necessary steps to protect you and your family from financial hardship. A lawyer or legal association can help you determine your states requirements. 

   Get your medical affairs in order by completing a Living Will and Durable
Medical Power of Attorney. NOW is time to make known your personal desires regarding the quality of life you want to maintain if you become symptomatic. Advise your family regarding issues such as using a feeding tube, donating your organs, donating your brain to research, and the use of mechanical life support. If you procrastinate , and become less competent and unable to make these decisions for yourself, SOMEONE ELSE WILL MAKE THEM FOR YOU.

Do not put your family through the heart wrenching agony of making these end of life decisions. If you procrastinate, you may not realize the necessity of making those decisions as clearly as you do now. HD affected emotions, such as fear, paranoia, lack of trust and blunting may cause you not to care, or you nay not see how these decisions will affect your future and your familys future. A lawyer or legal association can help you understand your states requirements.

   Begin immediately to eliminate stress from your life. Eat nutritiously and maintain a healthy lifestyle. Exercise daily to keep fit, strong and flexible. Read and challenge your brain to keep it sharp and limber. Do not overlook your emotional and spiritual well being either. The better you feel physically and mentally, the easier it will be to cope positively, if you inherit HD. 
 
  Immediately educate yourself about the variability of HD symptoms,
especially the softer signs, including the emotional, behavioral and cognitive
changes such as depression, paranoia, impulsivity, anger. withdrawal and loss of social inhibition. You must understand these symptoms so you and your family can recognize them and cope with them positively. Your extended family members should be included as well- share your knowledge and understanding with them so they may benefit too. 
 
Starting to do these recommendations now, while youre still playing with four strings in this concert called life, will help make it much easier if your fourth string snaps and you are forced to continue playing with only three! As Jack Reiemer said in the Houston Chronicle: So, perhaps our task in this shaky, fast-changing, bewildering world in which we live is to make music, at first with all that we have, and then, when that is no longer possible, to make music with what we have left.
 
May you continue to make beautiful music forever!


Phil Hardt