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
Parenting With HD

INDEX Page


I apologize for posting this whole article, but I didn't copy the website it
was on when I copied the story.  I you know where it came from please
tell me so I can give credit to the source.

Although written for PD, many of the same things apply for children living
with a parent with HD.   I hope you find this article helpful to both those
with HD sometimes struggling to be a good parent and have their children
understand what you are going through and to the spouses of pHD in tips
to help your children.

I'm sure many of you could write your own stories on how HD has affected
your children and your lives. If you'd like to share those, along with your
suggestions of things you've done to help your children accept having a
parent with HD,  I'd be willing to add them to a website to share with
other HD parents, names excluded if you wish.

Love
Jean
================================================================================


Parenting with Parkinson's Disease
by Sandi Gordon

 
My family has also gained a sense of humor as a result of PD.  My
husband, Paul, and I have used humor to relieve the tremendous stress
that accompanies PD, as well as to put others at ease who otherwise may
feel uncomfortable  around me.  Following our example, my children poke
fun at the amusing characteristics of PD and the funny predicaments
that the disease has put me in.
 
My daughter, Stephanie, was age 6 when she announced to the family "I
know about the Easter bunny!"  Her older brother was skeptical and
demanded more proof.  Being careful not to disclose the secret to her
younger sister, Stephanie grinned and cleverly responded, "I know it has
PD!"
 
PD is also providing lessons on sensitivity and on the need to show
compassion to people and their problems; their training having begun at home,
with me.  My daughter, Becky, is especially empathetic.  One fall day
we went to the "Apple Butter Festival" in a nearby town.  The festival was
actually a huge craft fare with thousands of people and countless rows of
tightly spaced tents, housing the venders and their precariously displayed
merchandise.  Navigating through the maze of people, strollers, tents, and
tables was a challenge for the average person, and a nearly impossible
feat for someone with PD. 
 
After several hours of successful dodging, I had reached my limit.   Heading
for our car, my feet suddenly froze as we came upon a sharp decline in the
road--another obstacle!  As I stood assessing my options, a small handslipped
into mine and gently tugged me on.  At age 10, Becky had the sensitivity to
recognize that her hills were my mountains.
 
PD is also encouraging my children to be creativity independent rather than to
depend on an often slow and inefficient mother.  They have prove that "where
there is a will, there's a way."  Before kindergarten, they each could tie their
own shoes, braid hair, make their own tuna sandwich(starting with the can), and
fold their own laundry.  Before high school, my son could prepare a dinner,
wash a load of laundry and operate a sewing machine.  PD has fostered an unusual
independence which has likelyaffected their self-confidence and self-esteem.

Finally PD is preparing my children for the future.  In later relationships, they will
draw on their experience, growing up with parents that loved "for better, for worse
....in sickness and in health," a living example of unconditional love.  And my children
will be well equipped to handle any unexpected challenges that may arise in their
lifetime.  Quoting Becky(now 12), "If my mom can make something as hard as PD look
easy, I know I can handle anything that happens to me in my life."

I may not be the perfect parent, but fortunately, children are both forgivingand resilient. 
Their ability to understand something as complex as PD always amazes me, which brings
me to a final story.  At age 3, myyoungest, Gina, told our minister, "My mommy can't smile
very good because she has PD."  Then she thoughtfully added, "But she smiles in her heart."  

This is a reminder to all of us "imperfect parents" that it matters not so much that our
smiles are seen but that they are felt! 

-Resist the temptation to depend too much on your child's help, which is neither healthy for
you or your child.  Children are very willing and generous helpers,  and like to feel needed. 
But they need time to be nurtured rather than always playing the part of the nurturer. Tell
and show your child regularly that you deeply appreciate them and their efforts to help.
 
-Be open and honest with your child about PD.  Welcome their questions, and don't
underestimate their ability to understand.
 
-Be specific concerning your difficulties, relating them to everyday situations. 
Example  "My fingers are stiff, and don't move easily, so it is hard for me to button
your shirt."
 
-Encourage your child to laugh with you at the many amusing aspects of PD.  Laughter
is an excellent stress reliever for the entire family.
 
-Verbalize your feelings frequently, rather than expecting your child to rely on
misleading visual clues.  Explain that people with PD may look sad or mad when they
are not feeling that way inside.   Remind your child regularly that PD makes it hard
for you to smile.  Let your child know that he/she makes you very happy even when
you don't show it.
 
-Be sure your child knows that he/she had nothing to do with your having PD.
 
-Apologize to your child when you have lashed out in misdirected anger at him/her,
anger that was a result of feeling frustrated by PD.
 
-Remember that how you cope with PD will be a powerful influence on how your child
deals with his/her own future challenges.
 
-If you are bitter or depressed much of the time, get help, if not for yourself, for your
child's sake!!
 
-Engage your child in some activity that helps the cause of "easing the burden and
finding the cure."  By setting aside part of their allowance money for a donation, or
offering their time by working at a PD fund-raiser, children will remain hopeful about
the future.  Hope is the strength that keeps people moving forward.
 
Sandi Gordon is the author of Parkinson's: A Personal Story of Acceptance (ISBN 0-8283-1949-9)
 
-NOT APPLICABLE TO HD
Do not assume that your child knows that PD is not contagious or fatal.  Be direct in assuring
your child that he/she can not catch the disease from you, and that people don't die from PD.

Here, for HD, something would need to be added that address their at-risk status.  After the
"open and honest" above, for HD you might add:

Let them know that their dreams should never stand still because of the risk of HD.  That their
lives will be enriched beyond their imagination if they pursue their goals and dreams, no matter
what the future might hold.  That each and every day of life is a gift,not to be wasted.