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
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
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
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
Parent Resources
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
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 Resources
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
-Seizures ~Special Populations
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
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-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Why Certain Symptoms Occur
Symptom & Treatment Resources
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
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
-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
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
A-Z Mental Health Drugs
-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
-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
Surgery-Movement Disorders
o Surgery Resources
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
Divorce & Child Stress
Tips For Divorcing Parents
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
Child Assistive Technology
Adaptive Equipment Resources
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
Helping Child Deal With Death
o Grief Addtional Resources
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
HD Support Groups
National Youth Association
HD Links
Related Resources
Tips For Friends
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
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
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
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
Letter From My Heart


As this letter indicates I don't know why these words came pouring out
of my heart that day.  Maybe because I was beginning to understand
Huntington's and that my daughter would die from it.  Or because people
were starting to withdraw from Kelly.  Or I was feeling sorry for her?
I only know that since that day, I tell every parent I know to treasure
their child.  When I hear a parent screaming at a child in the store I ask
them "and how would you feel if they died tomorrow?  Is what is happening
now really that important?" and tell them about Kelly.
If nothing else, I hope it helps a parent to think.  To have a little more
patience with their children.  To know that unless it is something criminal
or harmful to them, ask yourself is it really worth you're getting that upset

A Letter from my Heart

jean elizabeth miller
July 28, 1995

It's easy to acknowledge that all of the days in the first 50 years
of my life contributed significantly to who I am today. Ah, if only I
could invoke the excitement of each and every one of them in order
to carry that same enthusiam forward to however many more days
I'm given!
Would that the ageless sands of time move us from one sheltered
harbor to another. Oh, how simple our lives would be! Instead, I
believe, they cast us violently out to sea during a turbulent storm
only to cleanse us and gently place us back on the shore; a little
stronger, a lot more understanding. With each storm we're more
polished, beautiful.
It's as though we venture from day to day, especially as children and
adolescents; absorbing those intricate life settings which captured
our curiosity and satisfied our quench for life experiences.  Nothing
seems to escape us as we take in everyone!   Everything!   Never
enough time!!
Whether real or fictional, we absorbed something from it all and
delicately stored it in the cockles of our mind. Life, like a treasured, old,
stained glass; is fragile, beautiful, hypnotic. Always changing, ever
developing us, into whoever it is we are today.
Don't get me wrong, we knew "who" we were of course! Just ask us. 
Ha! We were naive fragile creatures with emerging identities!! Starting
with the basic foundation genetics provides, we forever expand this by
the thousand emotions we witnesses and/or experience daily. Some
saved to emulate for life, or temporarily, depending on it's significance.
Others, injustices, kept deeply locked which would guide our sense of
right from wrong throughout our lives.
Being An Individual
To those who have known me over the years I am constant, one who
seldom changes. Dependable, strong. To myself, I have been many
things since the age of ten. You see, I remember understanding that
I was an individal at 10; no longer dependent on others to identify
who I was.
Through the years I have been articulate and outspoken, quiet and
withdrawn, giver and taker, sarcastic and empathetic, student and
teacher, forgiving and unforgiving, superwoman and child. All of these
traits are exposed to those around me on a daily basis, however most
never "see"more than one or two, if any. The two constants I would
acknowledge is that of always having been a hard worker and one
who has always been truthful.
To a fault above all else I was, still am and am probably damned to be,
my harshest critic. This, more than anything, I feel has contributed
greatly to who I am. Every situation which I feel needs more definin
before accepting, I will take into a cocoon like a puzzle. Sometimes
I bring along the guidanc given by friends and family. This "thing" is
digested then spit out and reshaped then dissected into a million
pieces. Then I put it all together into something I can understand
and live with. This may only take a few hours; the more complex may
take months of soul searching. And then, it is done.  Finished.  Very,
very, rarely looked at again. Unforgiving? Sometimes, but necessary.
The most rarest and treasured gift woven into the fibers of my being,
since memory can be recalled, is that of friendship. When moving
around the world constantly; always a new neighborhood, a new school,
new people every year, I was forced to learn the multiple complexities
and traits of human nature, or be devoured. Children are the cruelest
little creatures! I learned a childs life was not as pure and naive as
we were told to believe.
After observing a few role models, the skill of cunningly assessing a person,
quietly until their true character surfaced (believe me, it will) was learned. 
All the little idiosyncrasies are not important, they are inherent traits we all
When all is summed up, people are either good at heart, bad at heart or
sometimes worse, indifferent. Period. It was those who demonstrated in
some small way to be good of heart that I would let into my inner sanctum
and try to earn their respect and friendship.
The value and strength of friends is everlasting. The warm memories we
hold the dearest, more than likely, are of those times shared with friends.
The first most treasured gift we are given, besides life itself, is our reputation.
A "reputation" really isn't established until we first enter school and are
subjected to the scrutiny of those outside of the family who, thank heavens,
always thinks you're the most precious thing to ever breathe!!
Most of us, as adolescents, are guided/coerced/threatened, etc., with the
fact that our reputation is very delicate and must be protected at almost any
cost. Naturally! What else can we think except here they (adults) go again,
trying to scare us just like telling us we're going to hell if we do something
bad! So, who really cares if you have a "reputation" for being the fastest
skater, the best speller, the funniest kid on the block or someone who lies
in confession? Jeez, won't they ever stop telling us what to do!
And then, usually in our teens sometime, "it" happens. Whatever "it" is,
you most likely didn't even realize you had taken part in "it". Unless, of
course, it's something you do that's really stupid and "it" causes you to
go to jail or be expelled or some other horrible thing that your parents
must find out about! 
No, it's definitely not being the best athlete, student, cheerleader, girl/boy
scout., etc.! It's the other "it", the one that's the most damning, 'cause it
is the one that gives you the "reputation" which makes you (in others eyes)
stand out.  You've obviously defied one of their creed of acceptable
behaviors, therefore immediately giving them the power to ostracize you.
Maybe "it's" for having sex, or dressing/acting different or being friendly
with "them" , etc., etc., etc..
This is one of the first most painful lessons in the importance of our
reputation and of our understanding that self-righteous groups
(i.e. more than one person) can have a capacity to harm when they ban
together, if they so choose. One of my most favorite sayings is
 "Mortal: Frail, easier to hurt than to heal".
There is a lesson here; you either feed on this learned power to control/hurt
others or you gain a deeper respect for the frailty of a human being and
try to respect it for the rest of your life. The choice is yours.
Simply put, that is what life is all about. We choose to do everything that
we do in our adult life. Understanding this can make life so much more
pleasant!! How we conduct ourselves. Where we live. Who we love and
respect. Who we don't.  What we do for a living. How we live each day of
our life. These are all choices.
If you're not making your own choices on those things that affect your life
then you are least likely to accept them and be happy with the
decision/your life. No one else can make choices for you. Only you can fully
weigh the advantages or disadvantages your decision may have on you
and, possibly, others.
Yes, in a relationship (personal or working), others must be taken into
consideration when weighing major decisions. It is best if those type of
decisions are collaborated, with a little give and take. However, don't totally
compromise your needs to the extent where you will resent the other(s)
or yourself for the decision you allow to be made. I'm not saying to
deliberately go forth and make choices which you know will hurt others
just to satisfy your needs. In any interpersonal relationship there is a
certain amount of negotiation required to get a win-win situation.
Just remember, ultimately you and only you are the one who has to live
with the decision. So, you damn well better make sure it's something you're
willing to accept.  If it bothers someone else, than that is their choice.
That's life!.
In answers to my prayers as a younger person (to have a house full of
children and loving husband) God, in his infinite wisdom, blessed me with
my daughter Kelly.  At least I got one out of several answered!!!
We can learn a lot by being a parent.  Patience has never been as important
as it is then. The endless joys of watching our child grow and the almost
reverent feeling, when trying to instill in them the values you feel will carry
them through their life, they listen. The importance of being an individual.
Of your reputation, and friends.  To respect yourself (to your own self be true).
Our dreams now become ones of their success as a happy, fully adjusted,
adult. For them to be blessed with love. And to always try to shelter them
from harm, physical or mental.
To have these dreams shattered is devastating in itself.   To lose your child
suddenly  or to watch them die, very slowly, is not a choice anyone I know
would make or wish upon another. You would give your very soul so willingly
to spare your child from being robbed of their chance to live.
It seems so very unfair that they've never had (or won't have) the opportunity
to be as truly free as an independent adult can be. Never to know the love
of someone in a marriage, or that of being a parent. The chance to grow old.
All those years of that guidance, and love and training wasted. They'll never
get to use it. Oh, my god, we think - if we'd only known we would have made
every second happier than the second before it! Screw all the lectures on morality
and right from wrong, etc.., just be happy my sweet, sweet child. You'll always
be my baby. Momma will protect you. And, you can't. No matter how hard you
pray, scream silently or cry your eyes out, you can't. There really aren't any
words to comfort you. How very easy  it would be to let this only true tragedy
be all consuming of your life.
I don't know why I've written this, it suddenly had to come out. Maybe it's because
I've seen so many people afraid of death lately that they can't confront it. Some
say I shouldn't be faced with the burden of watching Kelly die. Most respect my
choice. To the others, I say what burden? If she had been taken from me suddenly
I wouldn't have been given this chance to try and make her life as loving and as
comforting that I can. To try to give her a little piece of joy. It is those who cannot
face her who will lose the most because precious seconds they will never, never
get a second chance at are slowly slipping away. Physically, she is not "herself",
ah but mentally she is acutely aware of everything around her.
I wrote recently that we are all born with a terminal illness, it's called life. Life is a
wondrous thing. The indescribable beauty of a magnificent sunrise/sunset. The
brilliant colors of flowers and blooming trees. Autumn. The feel of mother earth in
your fingers, the sun kissing your face, the wind embracing your skin and sand in
your toes. The little creatures and big creatures who roam the once abundant land.
The joy you feel in your heart at the things which bring you the most pleasure.
The peace and contentment you feel when things are right.
And then there's love. Love is a fabulous thing! It makes you radiant! It makes the
world a wonderful place to be. The love of family. Love of friends. Love of a
significant other. Love of earth. Love of yourself. And, if you're blessed, the purest
love of children.
One could be disheartened and ask what is it all really for? Why do we need to be
of good character, love our fellow man, and lead a decent life etc. if we all live only
to die? Because, what kind of life would we have otherwise? Life is really something
to celebrate and rejoice in.
I think the loss of a loved one also has a gift to give too. The chance to understand
how priceless life really is. And if you do learn this, you walk this earth with a deeper
respect for your own life and that of others.  Almost suddenly there is very little that
can truly hurt you. Everything else seems mundane.
It's a shame this final lesson comes at such a great price. Yes, honey, Momma is here.
God willing, I will be until you no longer need me and are free again.


"Good Morning God"

You are ushering in another day.
Unbounded and friendly, new.
So, here I come to ask you, God,
If you'll renew me too.
Forgive the many errors
That I made yesterday,
And let me try again, Dear God
To walk closer in Thy way.
But Father, I am well aware
I can't make it on my own.
So, take my hand and hold it tight,
For I cannot walk alone.
Written by Charles Synder on his
100th birthday, May 28, 1999
Dunedin, Florida