Our Personal Experience


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


Our Personal Experience
The Early Years

Kelly Elizabeth Miller was born January 28, 1968 in St. Louis, Missouri.
She was a very normal, intelligent and beautiful child. In preschool (Montessori), with an IQ of 156, she was doing algebra!  Early in her school years (public)  the teachers thought Kelly was hyperactive (now either ADD or AD/HD) and she was treated for that up until the age of 12 for a very short time with Ritalin and then with Dexedrine. 

I had a very abusive, both mentally and physically, relationship with
Kelly's father Larry for the 6 years we were married.  It was when this abuse started to be directed towards Kelly, when she was 5, that I finally left that marriage in 1973.  We stayed in the St. Louis area another 3 years before moving to Florida because I thought having contact with her father would be best for Kelly.  It wasn't. 
The discussion of abuse in a HD marriage is another subject, however
it is something that should never be ignored and if you are in such
a relationship RUN, don't walk, to get help.  In the 70's there weren't
any "safe" homes nor were the police willing to get involved in domestic
problems.  It took me years to get over that abuse, but I know that
it had a significant impact on Kelly for many years.

We moved to Clearwater, Florida in 1976 to be near her grandparents
George and Jean Steffens and  so that I could transfer back to  Honeywell's Space facility because the opportunities for growth were better.

The Horrible Pre-Teen Years

The years between 12 and 15 were THE hardest years in both Kelly's
and my life!  I had had several promotions at work and was putting in between 50 and 70 hours a week and traveling on business a lot.  Although my parents cared for Kelly when I traveled, we thought a lot of problems she started showing were normal "adolescent" growing pains. 

Kelly had always been mature for her age and I trusted her completely. 
We had talked about drugs, drinking......the whole gamut of normal parental discussions when trying to protect a child.  When her grades started to drop and her behavior became more bizarre, I questioned if she was experimenting with drugs and believed her when she told me no. 
My own ignorance kept me from being "aware" of the signs of alcohol or drug abuse.  She became more sullen and disrespectful, totally out of character for Kelly  (see sections on this site for alcohol and drug awareness).

Then she started running away, or threatening to run away (which
was just a ploy to stay out later then her curfew most of the time).   There were threats of suicide almost weekly, which you can never take lightly, sneaking out at night while I was sleeping even "stealing" the car and taking great pains to park it where I couldn't tell.  She first wrecked my car when she was 12......that was my lesson in teaching her to drive when she was younger!  When she was taking the car more frequently later on, I kept taking my car to the mechanic and telling him something HAD to be wrong because my gas mileage was terrible!

We went through these years very painfully.  To have to even consider
the "Tough Love" methods of kicking your child at such a young age out of the house and ignoring them is very difficult.  To have to, at some point, sign an "Out Of Control" order with the state to protect my being arrested for her actions and having her placed in a Juvenile home for delinquent girls for months is, I thought at the time, one of the most difficult things a parent would have to do. 

To later have to have your child committed to a mental hospital for
intense treatment because their behavior was endangering to themselves and others (she threatened me with a knife) rips your heart out of your body.  But it was there, finally, after almost 4 months and $30,000.00 later (in 1983) when I finally got "my Kelly" back.  Daily one-on-one counseling, group sessions, alcohol and drug therapy, etc. returned her to me on her 15th birthday.

Loving Kelly didn't help her, counseling did  because it helped her
develop love for herself which seems to be lacking in so many JHD's no matter how much love they get at home.  And it wasn't  just one magical counseling session either........just one that worked out of several attempts.   You need to find someone they "click"
with.   Kelly happened to find one who could see clean through her bullshit because, God love her, she knew she could con everyone including me. 

When I signed Kelly out-of-control, did normal school/parent-child
counseling, sent her to the runaway clinic, tried parts of tough love which almost killed me, none of these phased her until the treatments at the psychiatric hospital.  But that took her almost a month to accept too, before it sunk in Mom was not bailing her out of this one based on their recommendations.  She had to EARN the privilege of even visits home.

All the cries for help in suicide attempts, stealing from me, drugs and alcohol were heard by me but kids rarely listen to their parents nor understand that some of the things you try to do for them is to help them vs. punishment. 
I think JHD's have a hard time having self-respect even before knowing they have the disease and it's just amplified after finding out. So maybe that is the answer. We all know a lot of teenagers go through periods of not liking themselves for one reason or another. 

Maybe with our JHD's this feeling is tenfold or more. It is bad  enough to
live through your teen years but to have a physical or emotional situation brought on by HD must make their lives a thousand times harder.  Years of mental and physical abuse by other kids at school taunting them and calling them names, years of parents and teachers not understanding  (before realizing HD's ugly head is there) .........all of these can add up to someone lacking in self-respect.   After all, "can all those people be wrong?"  they must think. 

Kelly told me she felt she was going crazy because she couldn't understand
why she didn't remember tasks or assignments, or why everyone thought she wasn't trying, when she was.

Since Kelly already had some atrophy on her brain caused by HD she wasn't
able to handle the affects of alcohol at all, but didn't realize it either.  She got drunk quite easily and then would have black outs and not remember a thing.
Drugs made her hostile and angry, booze mellow and sloppy drunk.  Was it a form of self medication, perhaps.  After we found out about her having HD I realized it was no wonder she tried to escape through alcohol and drugs.  At least during those times when she was high or drunk, she didn't have to think about them/feel the pain and frustration and fear of why all those things were happening to her. 

Her poetry written during this time speaks of the pain she felt yet kept
inside.  Most of these weren't shared with me until years later.  If you'd like the read them, they can be read at Kelly & Jean Miller's Poetry.  After HD we both got a good laugh on blaming all those bad years on HD...knowing they weren't the real Kelly!

After the intense treatments, Kelly knew who she was and liked herself, 
HD or not, and finally understood I was there and would always be for her.  Before then Kelly would cry and plead her sorrow when she did something wrong and I know she meant it with all of her heart, but that didn't stop her or I should say she couldn't stop herself.  It wasn't until she put some value on her own self/life that it all stopped......there a few minor set backs, but she came through those too which made me very proud of her!

What Is Wrong?

Shortly after Kelly's 15th birthday she started complaining about everyone
in school making fun of her because she was having these involuntary movements. Kelly was 5'9" and very beautiful and naturally drew attention to herself from her looks alone.  Having the kids call her spaz and all kinds of derogatory names cut her to the core. I'd study her, especially at night while she was sleeping, and couldn't see anything unusual and thought maybe it was all in her mind.  Sure, periodically she'd spill things or stumble but I attributed that to her always being in a hurry with everything she did.  But to ease her mind, I took her to see a neurologist.

They ran every test imaginable on her and couldn't find anything when the
doctor suggested she have this new procedure done (1983), an MRI.  It showed a small amount of atrophy in the caudate nucleus area of her brain. Based on this, the neurologist made an "educated guess" that she had Huntington's Chorea.   Say what we asked? This doctor did not have any bedside manners, was abrupt and not very communitive.  He just blurted that it was a terminal illness that he couldn't help and when she got worse to come see him but that she was going to die.

Kelly immediately went to the school library and looked up Huntington's Chorea
and Xeroxed the only description they had of it... needless to say it scared us. This article stated that the disease was hereditary and we had no known history of HD on either side of her family. This all occurred before the gene for HD was discovered in 1993 and the genetic testing for it became more accurate.
The little information I could find on the disease wasn't very encouraging either.
So we spent the next 4 years taking her to a whole battery of specialists who evaluated what the initial doctor had done (and advised me although he didn't have bedside manners, he was thorough) then ran their owns inconclusive tests. They were all stymied by the fact that there was no known history of the disease on either side of the family.

I had done extensive research on my family and the data obtained from her
paternal side turned out later to be "non-truths".  Two neurologists said it was wrong for the initial doctor to have said the atrophy was HD when she could have been born with it or it could have been caused by a nasty fall down the basement stairs when she was 1 or other head trauma from a fall at age 3 (first stitches) and hitting her head on the windshield of a car when she was 5.  The Chief of Neurology at Shands Medical Hospital in Gainesville (at that time it was Dr. Greer) called it "Kelly's Disease".

In the interim, Kelly's HD had progressed a little at a time which was more
noticeable to people who hadn't seen her in several months. She quit school at 17 and signed up for GED classes.  They tried to get her skill training through PVTI (a technical school) who determined she wasn't "trainable" due to her inability to follow multiple directions and her dropping things.  They were the ones who had her re-tested at the original neurologists, had another MRI done which showed the atrophy had progressed and, all with our permission, had her declared permanently disabled and placed on SS disability before she was 18.  However we both still weren't convinced it was HD without a family history.

By this time I had a computer and searched for information on HD.  The
internet had very little information back then but I found a small group of people on AOL who were connected to HD.  When the gene was found and the testing became 99% accurate, we had Kelly tested at the University of South Florida.  When her diagnosis came back, Kelly shocked them by actually being happy about her positive results saying that now she could tell people for sure what was wrong with her and hopefully they would quit accusing her of being high or drunk (ha!, people are ignorant).

The disease progressed fairly slow the next several years. As she was robbed
of one precious ability to do things on her own, we'd figure out a another way to compensate for that loss.  Since there was very little information available on the day-to-day care of people with Huntington's (pHD's), I learned you can be very resourceful when the need arises!   The most important thing was to let Kelly know, constantly, that we would not give in easily and that, as a "team", we could face any obstacle this disease threw in our way!

Caregiving - A Choice Made

Being a caregiver was a choice I made.  It was given a lot of thought and
consideration, fully knowing my career would suffer and that I could lose my job, my friendships would suffer (but didn't) because I wouldn't have the time to spend with them, and any relationship was out of the question because Kelly and my job would require 101% of my time.  Family and friends tried to persuade me to institutionalize Kelly when she was about mid-stage and were putting a lot of pressure on me.  My father, in particular, was trying to approach our situation without emotion he said. In reality, he didn't want his child to have to suffer through what he knew was in our future.

To be honest, I did look into possible facilities that could care for Kelly. They
are still, almost 20 years later, few and far between that have experience in HD care.  The only one I found was Jim Pollard's facility in Mass. and after weighing the consideration of moving or sending Kelly too far away, I made my decision.

Maybe my choice was 99% easier because I was dealing with helping my
daughter/only child.   But, once that choice WAS made I could live 100% with it and those that couldn't were told to keep their opinions to themselves from then on out.  Thankfully, they all honored that and I never felt a need to complain about being a caregiver because it was a conscientious decision.   I would verbalize about how difficult it got at times, and why,  but never reconsidered the decision to care for Kelly at home.

The "Contract"

Once this decision was made I promised Kelly that I'd always take care of
her AS long as she was my partner in her care which meant she had to help me wherever she could, for as long as she could. I sat her down and talked to her about it with my best friend, her Godmother Janis, as a "witness".   I wrote up this "contract" that both Kelly and I had to sign. 

For as long as she could, she kept up her part of the agreement but there
were a lot of times, too, were the pure stubbornness that seems to be inherent with HD (plus she came from a long line of stubborn people), she'd rebel and refuse to do things (laundry, dishes, etc.)   I'd try rationalizing....of course to no avail....then would calmly start looking up nursing homes in the phone book, telling her how sorry I was that she would rather move to one of those then to keep our agreement.   She give me "that" look of not knowing if  I were serious or what.......until she heard me talking about whether they had a "bed" and what would the cost be and how soon could I move her there (I'd call my Mom who would just lay the phone down while I played out this scenario).....then Kelly would start hollering "NO MOM NO" and we'd have a good cry and she'd start helping again. 

Am hopeful she's looking down laughing.......now.....at how I duped her but it
worked!  I should say that I took Kelly to several local nursing homes/assisted
living facilities as she did want to move out and be on her own, which was
natural for any young adult.   However after seeing that not only would she be a good 50 or 60 years younger then most residents, she would have to share a room and TV with someone, abide by the homes rules/hours etc., she decided living at home was much more to her liking! (She had Mom wrapped around her little finger and knew it!)

When Total Care Was Needed

In the summer of 1994 I was faced with the decision of having to quit work
and go on welfare in order to continue caring for Kelly at home.  Even tho I had remodeled our townhome in late 1993 to make it "Kelly friendly";  by putting down thick carpeting and removing all furniture that could hurt her if she fell or moving it to the outward walls of a room, enclosing the 12 x 22' patio into a room downstairs for Kelly, etc. Kelly would have a fall at home at least once a month sometimes calling me (10 minutes away at work) or calling EMS down the street because they had all young good looking guys! 

The last call from EMS at work greeted me with an officer from the Sheriff's
department.  He, very kindly and with compassion, told me that he had been called in by the EMS because of the frequency of Kelly's falls and that, although it was obvious that Kelly was getting excellent care at home,  but since I was aware of her disease and condition that they should arrest me for abuse for leaving her unattended.  That, as a minimum, I had to post an emergency phone number where I could be reached 24/7 on the front and back doors and include this notice visible anywhere in the house. 

At this time, Kelly looked very healthy and only had a little chorea.  She
could still eat normal foods and hadn't had any choking experiences.  She learned what she could eat and not, and had a strong sense of self-protection, refusing anything she knew she had trouble with.  She was very nocturnal staying up till all hours watching TV and sleeping until noon each day. 

Our regime had been I would go home at noon and get her washed and
dressed, feed her lunch, then get her settled into the living room where she had her cache of food and drinks, the  phone with very large buttons pre-programmed to calling me at work and EMS, her TV pre-programmed to her favorite channels, etc  Kelly was still able to get herself transported from the couch to a dining room chair on casters that she used in the house (for years vs. a wheelchair), into the bathroom with grab bars and back into the living room.  

However is she missed the couch and wound up on the floor, a lot of times
she wasn't able to get herself back up so she'd either call me or EMS.  After the first couple of times of getting herself worked up into a panic, having near seizures etc., I told her if she wasn't hurt to just lay calmly on the floor and watch TV until I got there. After that she usually didn't panic unless she couldn't reach me or my secretary immediately, then she would call EMS anyway.

Naturally, this shook me to the core.  I had been working for Honeywell
for 33 years by this time and I spoke to my manager about the situation at home, explaining how I felt I would have to quit work.   They were very compassionate and changed my work schedule to where I went into work in the mornings and worked from home via computer in the afternoon.  I had a very challenging position of managing multi-million dollar subcontracts and also had 12 direct reporting people so I'm not indicating that this was easy for me to juggle but hey, aren't all HD caregivers superhuman?

Later Stages Starting

In October 1995 Kelly had her first bout of pneumonia.  She was asphyxiating
thin liquids into her lungs.  The motor capability for normal reflex in choking was  affected and Kelly couldn't determine when something was  going down the wrong pipe.  Instead of listening to her doctor  trying to force a feeding tube at that time, we just modified how Kelly ate.   All of her drinks were thickened with Thick-It which is an overly priced thickener you can buy at most pharmacies and eliminated all diary products since they have the highest bacteria which, once ingested into the lungs can cause pneumonia within 24 hours.  

Kelly's primary care physician, at that time, was "college educated" on
Huntington's Disease and knew the course of the disease.  We had discussed Kelly's wishes with her several times in not wanting a feeding tube.  When she ordered one, without our consent or knowledge on this hospital emergency, I was outraged.  It was then I learned you need to ASK your physician that they will HONOR your advance directives because many will not because it is against their code of ethics. This doctor was fired and complaints filed against our insurance provider (Blue Cross/Blue Shield), my employer Honeywell (self-insured), the state board of medicine and the AMA.

The Hospice Decision

While in the hospital they recommended physical and occupational therapy
for Kelly which would be fully covered if she were transported directly from the hospital to the Rehabilitation facility.  By this time Kelly's chorea was much worse and she was having difficult even maneuvering her electric wheelchair.  Their "plan of action" included looking into a making a method of converting her wheelchair with a straw type device to allow her to operate it by blowing into the straw and several other things that sounded very promising and positive for Kelly.   After a week there and spending every spare minute there with Kelly, I could see they weren't doing anything but collecting insurance money. 
Their final recommendation?  Kelly loved clowns and they thought I should take her to clown training where she could be a clown visiting hospitals!! 

However the very serious outcome of this whole episode was that I had to
finally face the facts that Kelly could no longer be alone, even in the mornings.  Kelly was down to about 100 pounds. At that time it was recommended that Hospice become involved in her care. That had been recommended two years before then, too, but we had declined. This time I felt the need was real, as I could no longer care for Kelly at home and work full time without some help...it became too dangerous to leave her alone. There is no way of knowing how our lives would have been affected if the Hospice of the Florida Suncoast hadn't sent their "angels" in to help with Kelly and if my employer, Honeywell, hadn't been compassionate and caring enough to allow me to telecommute from home half days.

Like everyone else, your first reaction to "Hospice" is "death" is imminent.........
oh God does that hurt especially when it's your only child.  I won't say it went  easy at first because when Hospice first visited us we got into a huge fight  because of their perception of Kelly as someone young, looking "healthy" and  not needing their care.   After an education in Huntington's Disease, and they're going back to find out more about it, Kelly was accepted.  

Before they came I had to discuss this with Kelly.  Naturally she was upset, too,
thinking she was going to die in 6 months or less until I explained it to her that
ONLY God could make that decision and we just needed to think of Hospice as someone to help us at home in her care so Mom could continue working and paying the bills.  Once Kelly understood this, she welcomed their care because no matter how much someone with HD might tell you they don't need it, they are relieved to know someone is nearby 24/7.

The Disappointment & And Personal Losses

June 12, 1996, after 3 years of being on the list to be the first person to have
the fetal transplant procedure done at USF and placing every HOPE we had of stopping the progression of HD in Kelly, we were advised that they were finally approved to do this procedure BUT they had changed their requirements and no longer wanted someone in middle to late stages of HD but someone recently diagnosed. 

This was one of the most devastating times for Kelly and our whole family. 
After explaining this all in medical technological terms to Kelly, who was so excited about hearing WHEN she would have this operation done......I sat there shaking and crying and said to the doctor "YOU explain this to her in English".   Kelly was getting upset seeing how upset I was, and her chorea worsened.  The doctor just responded with "you're becoming way too emotional over this" when I said to Kelly, very calmly, "honey what Dr. Hauser is saying is that they won't be able to use you for this operation right now" and she starting crying "NO NO" and trying to say  "I  want to drive, I want to LIVE".  Then he said "it's obvious you are both overreacting" and started to walk out of the room....and I lost it.   I started screaming at him what an insensitive b****  he was, etc. etc......every patient in there heard me.  We never went back there again. 

Two days later my Dad, who was very healthy at age 76, dropped dead of
a heart attack.  Two days later Kelly became incontinent, and her physical condition started to deteriorate more rapidly.  But being the survivor she was, she still never gave up hope that the researchers would find SOMETHING that would help her.   I read every new piece of research that looked like it could help one day to her.  We had moved my Mom back into the area to be closer to my brother, sister and I.  Although she was healthy, she did have a drinking problem which was eroding her health.  

Further Decline In Health

August 11,  1996 Kelly was admitted to the hospital after her fever reached
104.9 .  She was totally dehydrated, her oxygen was at 60%, her potassium was depleted and she had developed pneumonia and was close to death. The doctors said that Kelly must be one hell of a fighter, since she should not have survived the fevers ravaging of her body.  He told me she would have been gone in 12 hours if I hadn't ignored the nurses and doctor and brought her in and chewed me out for letting the nurse tell me Kelly wasn't dehydrated because when she pinched her skin, it came right back. He said even idiots knew the "pinch test" doesn't work on young people! 

I knew then  that I would never listen to a professional again or take
everything they said as the gospel.  I  would  follow my heart in caring for her.  They had been treating her with the wrong antibiotics at home and hadn't  taken proper tests, etc.  The hospital was surprised that irreversible damage has not been done to her already ravaged brain from the high fevers. 

After this, Kelly's doctor placed a "stat" in her medical file that ordered
everyone to "do as Mrs. Miller suggests" because he admitted to me that I knew more about my daughter and Huntington's Disease then he was able to learn.  This was after of several different medications had been ordered by the nurses for Kelly at different time which would have caused her more harm then good, that I ordered them not to give her and threw them away.  They were not allowed to start her on any medication without my permission.

The Feeding Tube

The doctors by this time were with Hospice (a wonderful oncologist). 
He told us in the hospital that Kelly had to make a choice.  She needed a feeding tube to live.

Even tho Kelly lost her ability to verbalize,  her feelings/her eyes
(and nods) spoke volumes!!  At this time the doctor's had to question Kelly's competency for her to make her own decision.  They were amazed at her awareness and understanding and decided she was competent to make her own decision on whether or not to have a feeding tube.  
What I had to explain to them is not to ask the standard questions, like what year is it or who is the president. Since people in this stage of HD world usually revolves around TV, family etc. question her on those things.   She could tell you every TV show, time and station but didn't give a damn who was president! 

After explaining the choices Kelly had, and explaining the procedure for the feeding tube and explaining how in someone so young, having the tube could possible give her more years to live, we left Kelly alone in the room to make her decision.  I went outside and cried my very soul dry.  No one or no words could comfort me.  I was also torn with leaving Kelly alone to make that decision because I knew she depended on me, therefore knew I could not be in the room with her to influence her choice in any way. 

It was God and I alone in that parking lot with my praying that He give
Kelly the guidance to make the decision which would be best for her.  After 30 minutes had passed the doctor's and I returned to Kelly's room.  I don't remember breathing for the past 30 minutes, but the minute we walked through the door Kelly had a huge grin on her face and said as clear as a bell "I WANT TO LIVE"...and I could breath again.

I know there are many pro's and con's about having a feeding tube.  The
only thing I would like to add is that, especially in young people, that if they are cognitive and aware even tho they may have previously been adamant about not wanting a feeding tube when the time comes where it is a life or death situation they should be given the right to reconsider that choice.  Like Kelly, there have been other young people who, when faced with this final decision, have changed their minds.   Also, please see my articles on Feeding Tubes, they really aren't difficult to care for.

Saying Good Bye

To have to tell your child that it is okay to let go, if they want to....that
you'll be with them again one day...is THE hardest thing any parent has to do. And yet, we must when the time seems near. The first time Kelly and I discussed this was 3 years before she died.  At first she was a little angry and upset and asked me if I wanted her to die.  She had been delirious from dehydration (when the nurse said she wasn't) and was seeing angels all around her.  Kelly fought hard to live then and boy did we both have a good long cry over that first discussion.  But, it lets them know you understand that fear staring them in the face.  To know you are there, which they like to have constant reminding about.  They're experiencing deep fears of abandonment even from those that love them.

No matter what stage of the disease we can never know for sure how much
time someone has, that's why it's so very important to remember to count each and every day as its own entity and a gift to treasure.

Seizures & Night Fears

Kelly didn't have seizures towards the end but had them in her early 20's and
were usually brought on by her hyperventilating becoming overly excited about something.  After the first Grand Mal seizure I learned to see the signs and 98% of the time could stop them before they went into full blown seizures by getting her calmed down. 
In Kelly the signs were sweating profusely, chorea became much worse, body
clammy and cool and the key thing was eyes would dilate until the entire color was gone and then, the split second before having the seizure, would shrink to the size of a pinhead.  She would go into a trance-like state right before having the bodily movements of a seizure. 
If it got that far typically I could "bring her back" by yelling, calmly, smoothing words into her ear until she began to focus again.  Well, I don't know if they were soothing - mostly just calmly and LOUD "Kelly, Kelly, Kelly you're having a seizure honey, calm down. Calm down honey Mom is here and everything will be all right."  Her eyes would start to refocus and she'd smile and say "I was having a seizure wasn't I Mom?"

Seizures and high fevers scared the hell out of me more then anything else
with HD.  Both can do more damage to the brain which isn't good especially for someone with HD.  Twice, when Kelly had one of her very high fever bouts, she went into multiple seizures.  The nurse was shocked as she had never seen anyone have so many in such a short time nor be "pulled back" out of one by coaching. 
Seizures are scary and frustrating where you feel at your wits ends.  It dawned on me that if seizures were making me feel this way, just imagine how Kelly felt!  Kelly was very scared, her body had changed and she didn't have the ability to communicate her fears. 

Laying there, especially in the dark, they are more aware of, and scared of,
dying.   The TV and the light are a small comfort.   I had a long talk with Kelly when she started to become afraid at night, talking to her about her fears and asking different questions for her to nod her head to.  She cried when she realized I understood them.  
Even with baby monitors and constant checking on her, in the later stages Kelly was more at rest when she could physically see me.  That's when I started sleeping in her room at night, so she could rest.  Her voice had become almost inaudible where her moans or cries for help could not be heard on the monitor over the sound of the TV in her room even tho the monitor was in the bed near to her head. 

Another Tragedy

On June 3, 1998, after not being able to reach my Mom at noon or for the
next several hours, I called the Hospice nurse back into watch Kelly so that I could run over my Mom's apartment and check on her. I found her dead with a broken neck from a fall in her bathtub.  She had apparently had a stroke leaning over the tub to hang some underwear that she had washed by hand sometime very early that morning.   I had just seen her the afternoon before, bringing groceries over to her place before going home after work.  My other "rock" in life was now taken from me.

WHYWHYWHYWHY I kept screaming in my head over and over.  I knew this
would devastate Kelly and although she saw the sadness in my face and swollen eyes later that night, I lied and told her Grandma had fallen and hurt herself badly, but was in the hospital.  I wanted Kelly to get a good night's sleep. 
Kelly woke up during the middle of the night calling for me. She was sobbing and looking upwards towards the sky and trying to say "Grandma, Grandma".  She knew and she wanted to know the truth.  Had Mom come to say goodbye to Kelly?  Hopefully one day I will hear the answer to that.

A Crack In My Veneer

Apparently a crack developed in my veneer of "super woman/saint" who could 
handle just about anything and just I sort of started to unravel at my seams!  "Depression" was not a new word in my vocabulary but definitely one I'd been fortunate enough not to have to deal with personally in what seemed like a  zillion years ago (my 20's). 

After my Mom died, Hospice firing our beloved steady nurse, then having to
make hers and Kelly's and my  funeral plans and Kelly's declining health, I guess it all became a little too much for me to handle.  I was  intelligent enough to know the symptoms of depression and knew I was building up a classic full blown case but imagined this would be just another one of those things I could "handle".    Shying away from getting involved even with the online HD support group , or even friends, letting things go around the house to the point of disaster, slacking off on my job responsibilities, lack of sleep/too much sleep, sobbing at the drop of a hat or certain song, etc. became all too familiar to me. 

The week after my Mom died I took an "unplanned" week vacation (a day at
a time).  I just couldn't face anyone and am so fortunate Honeywell understood because during that week they never knew from day-to-day if I was coming into work or not.  I  spent the 7 hours the nurse was here each day attacking my house like Mr. Clean, without a break, thinking the physical labor would shake me out of these doldrums, plus I would accomplish getting an organized house.

Well, my house was spotless and looked beautiful, Goodwill was  richer, and
I used muscles my body forgot it had.....but after that week I still found myself quivering all over when I drove into work, and then again driving home, with periodic bouts of shaking and crying in between.   When I recognized I was causing physical damage to my own body (heart palpitations, hyperventilating, etc.) 
I finally  admitted to myself that maybe this was something I couldn't handle on my own and sought help through our employee assistance program.  My first visit with the psychologist I was told I'd  probably been in a "severe" state of depression since my Dad died and all the major changes in Kelly's health.  My Mom's death and other things were just the final inevitable straw which broke the veneer.

The next few months were a blur to me.  Kelly's will and spirit seem to diminish
more each day but I still had hope in my heart that she would rebound as she had so many times before.  In October we got the chance to take her to her most beloved place, Clearwater Beach, as we were given a free weekend at the Sheraton after a newspaper article appeared in the St. Petersburg Times.  The students and the University of Florida's Mechanical Engineering department had completed their project for Kelly.

The "Kelly Mobile" was a portable gurney that I could use to take Kelly out of
the house that fit into the back of our Taurus station wagon.  It was just like an ambulance gurney where the front wheels collapsed to place the device (and Kelly) into the back of the wagon.   I had gotten the idea after seeing some baby
carriages made out of PVC piping that could be taken apart.

Although Kelly loved being with our family and friends who all came with us
that weekend, her heart really wasn't in this trip and it took too much of her energy with all of the excitement.  When all the newspapers and TV stations came to our house in August to write the story about the "Kelly Mobile" Kelly's stamina was better then mine.  She was loving every second of all the attention.  It was two months later now....where did the shine in my baby's eyes go?
Her  Battle Ends

Kelly gave up her battle with HD on 15 November 1998 at the age of 30 two months
shy of her 31st birthday. God came and gently took her hand. She left in peace and with the biggest smile on her face.  Please read  "Coping At The End" which was a letter written to another JHD mother in response to her asking me to please "tell me how to cope".

Kelly's Lessons

This disease robbed Kelly of the chance to experience the gifts of life, like
independence, the love of a husband and children, lasting friendships that too many of us often take for granted. Kelly is my most profound joy and love in this life and she gave  me and everyone who knew her a great sense of pride in her continual fight to "live".

The lessons Kelly taught people were  humility and unselfish love. She found
joy in almost everything, gave from the whole of her heart and forgave all injustices human beings had been capable of inflicting upon her. She was, without a doubt, a beautiful angel on earth.  Even when she could no longer verbalize her feelings, her eyes were the windows to her soul.  Kelly's cognitive abilities remained very intact throughout the course of her HD.

Would I Do It Again?

We would all like to turn back the hands of time if even for a few precious
minutes, but I don't think very many would ever want to change anything in their lives because everything is a lesson if we learn from it, we'd just re-live the special times.  Even if I knew about HD being in Kelly's father's family, I am so thankful that I was given Kelly's love to share that the only thing I would want to change is for a cure to have been found in time. 

If given the chance to do things differently, knowing about HD, life might
have been easier for Kelly.  Would I have had Kelly knowing the risk of HD?  That's something I can't answer, but I know I could have never been given as much love, or learned so many of life's lessons, if she had not been my child. 

I used to tell her God knew she would be a special child so He looked long
and hard to find the mother who would be there and help her in her life before He chose me. That we were a team assembled in heaven that no human being could break/shatter.  Then I would tease her about how, in our next lives,  our roles would be reversed and she would be caring for me.  Sometimes she would get this mischievous grin on her face like she was thinking of all the things she could do to me, but then she would shake her head  "yes" and say "I love you", which was the only thing besides "Mom" that she could say fairly clearly up until her death.

Choices & Lessons HD Teach

"You have choices. You either change your attitude or your life."

You know, when you hear this you immediately think "what a joke, easier said
then done."   When you're confronted with a life situations (like a terminal  or
serious illness)  you learn, finally, that there are things in this life that you.
..........no matter how much effort/heart you put into it............cannot change.

The Serenity prayer
"God grant me the serenity
to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference."

Then one day the wisdom to know the difference dawns on you.  "When the
student is ready, the teacher appears."   Unfortunately most of us usually subject ourselves to months/years of anger, doubts, frustrations, pity etc. and are usually on our last rope before we allow this very simple truism to be known to our conscious mind.   Once accepted, you learn to adapt your attitude/your life.   That's IS survival.   You learn to trust your own instincts and most importantly, learn to laugh at yourself.

Living with HD has taught me what God has wanted all of us to learn and
that is "that love is the answer".  It's so simple it's sad how we spend most of our lives chasing answers when they are all in our hearts to begin with if we'd only open our souls to see. 

HD gives us the greatest gifts of all;  the importance of love, patience,
understanding, compassion for others and gratitude for life littlest joys.   Look at how many in this world never even scratch the surface of understanding that these things are really what life is all about.  Yes, there is pain and heartache, tears and sadness........and although we can't see it when we are experiencing them,  they are the ones that eventually teach us the real meaning of life.   I have yet to met one person touched by HD who doesn't have a beautiful soul/heart full of love.

Love IS Endless

During the last  fifteen years of her life, Kelly taught "forgiveness"-towards
those who demonstrated hostility against her because she was different;  the joy of "laughter" - even in the face of impossible adversities; "humility" -in knowing that  there are some things in life over which we have no control,"faith" - in seeing her acceptance and ability to even after the total loss of her bodily control and speech, "compassion" - towards all things living and unending "love" - which shone in her eyes every waking moment of every day.

The last week of her life I had to tell her that if she wanted, it was okay to
let go.  That in heaven she would be free of Huntington's and  be able to sing and run and talk again and be surrounded by her loved ones who were waiting for her. Normally, in the past, she would look at me angrily when I talked of this as if to ask if I wanted her gone. This time she just looked at me with eyes so filled with love as if to say "I know, Mom and please know how much I love you".   I  then kidded her that after the holidays would come her 31st birthday and she shook her head, strongly saying "no". 

At first I thought she meant she would be some other age but then  I remembered
her always saying she would never live past 30 even when she was young. The
first time she said this was at age 5, when I was 30.  She looked at me, matter
-of-factly, and declared "you know, when I'm 30 I'm going to die."  Then I teased
her about 30 not being old.  Kelly made this prediction many times during her life.
Somehow, in my heart on this November day, I felt  that Kelly did not want to
go during the holidays but  had no intention of waiting until her birthday.

The emptiness in our home and in my heart cannot be described but early that
Sunday afternoon, all of a sudden, my whole being was filled  with a sense of
peace and Kelly telling me she was so happy and free.  Even in my pain, I could
not deny her final happiness.

Kelly was in such a deep sleep the Saturday night before she died and so very
many family and friends told me that they had either dreamt of her Saturday night or awoke very early Sunday morning thinking of her and wanting to call.  I feel that Kelly's spirit was going around  saying her good-byes to those she loved.  Her love will continue and I know she will be an angel of caring for anyone suffering just  as she did in her life.   Her compassion for others knew no boundaries and her abundance of love, and love of life,  was felt by all who  knew her.

A few days later, after taking care of some paperwork at the funeral home, my
friend took me to dinner at Dervish Brothers on Sand Key,  which we hadn't been to in years.  The dining room overlooks the Gulf of Mexico and the water was so tranquil with the waves gently  breaking the shore similar to Kelly's final breathing.  I felt such a sense of pain and loss and anger that she couldn't be there...then the  sun started  to set. 

Never in my life has there ever been a sunset so amazingly pink...Kelly's favorite
color! The most vivid shades of pink  threaded  throughout the scattered wispy clouds and spread over the whole horizon for miles. Everyone was exclaiming how exceptionally  beautiful the various shades of pink were! 

All of the tables had white candles in various stages of height. Our candle was
only burned about 1/4  of it's height.  Suddenly, the waiter appeared with a brand new PINK candle at our table and  lit it.  Janis, Kelly's godmother, and I both  gasped and I asked him why was he changing our candle and why did he choose pink??  He replied he really didn't know, he saw a pink candle among the others and thought he would put it  on our table.  To us, Kelly was smiling down and showing us we were surrounded by her and that she was happy for me to be there.

My life has changed somewhat sense then.  I continue to carry forth Kelly's
love and compassion into my every day by trying to help others living with Huntington's.  Is there any mystery to the fact whenever I bring my camera to the beach  that the sunrises and sunsets are drenched in various colors of pink? To some, probably not. To others, these are a gift from Kelly letting me know that love is endless.  In my heart I know it is my Kelly's saying

"Hello Mom, I still love you!"

If you'd like to see some of those "Hello's", go to:  Kelly's Sunsets
With love
Jean & Kelly Miller
(in heart/in spirit)
Clearwater, Florida