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Robert Bishop
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Content 1999-2009
CureHD Foundation
All Rights Reserved.

www.curehd.org

As told by Chuck Young...
All my life I have been the strong one. I’m from Texas, and you know how Texan men are; larger than life, good providers and we never cry.

For all that, though, this Texan’s heart melted when I saw Linda at the Valentine’s banquet, when we were both in the eighth grade. That was our first date. Although there were high school flirtations with others, neither of us ever dated anyone else. After one year of college, Linda became Mrs.Young and we began our life together.

We were both disappointed when tests finally showed I was unable to have children, but of course, now we know that was a blessing. Our disappointment turned to joy when in 1968, we received the most special present of that or any Christmas since. Four day old Michelle entered our home and our hearts through the miracle of adoption. Life just couldn’t get any better.

Our little family settled into our routine, going through similar trials and joys of any middle class American family. I was in the petroleum equipment business for twenty-five years, but the oil crunch in the mid 1980’s ended that career. It also wiped out all of our financial assets. But we were young, and so in 1986, I began selling Life Insurance, Retirement Planning, Disability Insurance, and Long Term Care. Our financial situation again prospered, and then my Michelle announced she was going to make me the proudest grandpa in Texas. Little Cayley, that stands for my initials, CAY, and Linda’s initials LEY, was to be the beginning of what we just knew would be the best stage of our lives. Boy, were we wrong.

In May of 1990, Linda decided to take a series of golf lessons. One of her main problems was that she could not keep her feet still while she hit the ball. While she was addressing and hitting the ball, her feet kept shifting. Linda has never in her life dealt well with pressure and I teased her a little about keeping her feet still. I realized that just the pressure of taking the lessons made her nervous.

Over the next year or so, every time she sat down she would kick her feet until her shoes would come off. I also noticed that she was wearing out her shoes in record time. The upper part of her shoes were badly scuffed and torn. As time continued, the foot twitching became leg kicking. She explained to me that the reason she was wearing out her shoes so quickly was that she kicked them on her secretarial chair at work.

During this time, she also became very emotional, impulsive, and anxious about everything. Coupled with her anxiety was the stress of rebuilding our financial security, the normal stress of living in today’s society, the marriage of our daughter, and just the experience of moving into our fifties.

Linda expressed that she felt as if she had a motor running inside her that she couldn’t control. I suggested to her that since she was experiencing the change of life, she should express this feeling to her gynecologist. She did, but she was basically ignored. I then suggested she talk with our family doctor about this, and again, there was not much response.

Being the determined person I am, early in 1992, I said we were going to find out what was going on regardless of what it took. We were referred to a neurologist here in Amarillo but after our first visit, we both came out angry. He didn’t listen to what we told him, but instead, seemed to have his own agenda. He said he wasn’t sure what the problem was, but named a string of diseases that could be the culprit. Without even having a diagnosis, he gave us a prescription of Haldol and told us to come back in six months. I read up on Haldol and it scared me to death but, I decided he knew a lot more than I did. So, despite my misgivings, we followed his instructions. The Haldol stripped Linda of who she was and gave her a masked face, no emotions; she became a very drugged out gal. All the while, Linda continued to work and drive.

After six months, I decided we were not going back to him, and with some direction from my company doctor in New York, went to another neurologist. He said the exact same thing as the first doctor, but he did listen, and suggested staying on the Haldol. After six months, and some progression in symptoms, my company doctor said we needed to get her to a teaching hospital or a large neurological clinic. We made an appointment with a highly qualified doctor in Dallas, Texas, which is three hundred sixty-two miles from Amarillo.

This doctor put Linda through the tests and said she wasn’t sure about the problem, but took her off her medications and gradually started her on Kolonopin. Every time we went to Dallas, the neurologist would call other neurologists in from the clinic to observe, but the elusive mystery still remained. Finally she referred us to Dr. Jankovic of Baylor Medical School in Houston.

I knew Dr. Jankovic’s name because I had asked one of the Amarillo doctors who the best neurologist in Texas was. The good news was that without hesitation he answered, "Dr. Jankovic in Houston." The bad news was that Dr. Jankovic no longer sees patients but travels world wide giving seminars and writes the books that neurologists study. When I mentioned this to the doctor in Dallas, she said that she had done a fellowship under Dr. Jankovic and he would see Linda. In less than a month, Linda and me were sitting in Dr. Jankovic’s office.

After a brief neurological exam, he said, "I think the problem is Huntington’s Disease, but we can find out with a blood test." After all this time I could not believe something so simple as a blood test was available. The blood was taken that day in October of 1995. He also filmed Linda walking and they performed an MRI.

On December 15, 1995, at 12:00 noon, six months before Cayley was born, I entered the house; Linda was standing in the middle of the living room with her arms outstretched, expecting a hug. The first thing she said was, "Dr. Jankovic called me this morning and my Huntington’s test was positive." We hugged and cried for a while, and I said, "Well, at least now we know."

We really didn’t have a hint about what was ahead for us, because we had never heard of Huntington’s. A couple of the other neurologists had said that what she had could be Wilson’s, Huntington’s, Tourette's, or Restless Leg. We thought HD was just one more disease to rule out. We had never seen anyone with this awful disease either, and we knew nothing about it. Oh, to be that naive again.

Although I had been trying to get Linda to quit work for about two years, she kept saying that if they could find the problem and correct it, she wanted to continue working. The probable diagnosis spelled the end of her career, and her last day of work was October 22, 1995. For several months before she quit, we would come home and lie on the bed for an hour or more before she felt like eating dinner. This was a difficult time for her, she didn’t feel like doing anything around the house. That bothered her so much because she didn’t want me to do it all either. Many discussions and tears were had during this time as I was doing more and more of the cleaning, washing, shopping, and cooking when she didn’t feel like it. Something in her rebelled, and she didn’t want me to do it all. I kept, explaining to her that since she didn’t feel like doing it, she needed to just rest and allow me to handle those things. Until this time, we had always been a fifty/fifty team on housework.

Linda’s father died at forty of a massive heart attack. His two sisters, Linda’s aunts, had died in their twenties and thirties of cancer, and her grandfather died as a young man in a farm accident. The Thompson family was not close knit and there weren’t many family members. As we quizzed Linda’s mother about the Thompsons, she kept stating that there wasn’t anyone else like Linda in the family. Much later she did admit that there was one other family member that did sling her head from one side to another. Linda’s father stuttered in his youth, had slow mannerisms and you could see the wheels turning long before anything was spoken. There was also a cousin who was the same.

Dr. Jankovic in Houston prescribed Tetrabenazine, which is an investigational drug. Although Chorea is a primary symptom, Tetrabenazine has worked pretty well. In the summer of 1996, Linda’s appetite went wild. She would eat huge servings of a meal and 30 minutes later complain of being hungry. She went from one hundred thirty pounds to one hundred ninety pounds. During this period it became impossible for her to sleep, and the less sleep she got, the more the symptoms raged on. When we brought this to the doctor’s attention, he said the same part of the brain controls the eating, sleeping, and sex drive, and he prescribed Prozac to slow these symptoms. She has been on Prozac since that time and I’m convinced this is part of the reason Linda is doing as well as she is.

During the last year or so, symptoms have progressed rather steadily. Now she is unable to do anything other that eat and sleep and watch TV. Her chorea is erratic, sometimes calm and other times violent. Her ability to reason or be reasonable is almost non existent. She is as impulsive as a young child and wants everything now. She has no patience. For example, the minute I begin preparing a meal, she wants it right now. Her balance and walking ability varies, but most of the time, she ricochets from one wall to another. She simply leans forward and just falls until she runs into something. Sometimes she eats and talks well, and other times she has a great deal of trouble with both.

Every day I experience almost every emotion known to man. I guess I will never know why God allowed such an ugly disease to consume such a beautiful lady. You see, the very first time I saw Linda was at church in the eighth grade, and I was determined that she would be my girlfriend. Little did I know that for the next forty years, she would be my best friend and companion. I guess a boy would not comprehend what that would mean, but from the age of fourteen, that is exactly the relationship we have had. We have done virtually everything as one including working, planning, laughing, crying, traveling, relaxing, playing, saving, spending, sleeping, and making love. Now, for some reason, God has allowed most of that to be taken from us. I still experience love when she calls me twenty, thirty times a day saying, "I love you.” But I also realize at some point, hearing that will also be taken from me.

I never paid much attention to caregivers before, and I didn’t understand what those words meant until the last three years. People began expressing their admiration and appreciation and concern for me but I just brushed off their comments with a "Thank you." You see, I had always been known in our circle of friends as the strong one, the one that could fix things, the doer, the one with big shoulders. As time has progressed, I have become proud of the term caregiver, and I now appreciate what it means.

For an HD caregiver, it means giving of yourself far more than one has to give. It means having far more patience than you have ever thought possible. It means experiencing emotional mountain tops and valley lows all in one day. It means having a friend ask, "How is Linda, Chuck?" and instantly bursting out in tears, bawling like a child. Yes, the big, brave, strong Chuck may now be seen, any time and any place, with tears in his eyes from the broken heart of seeing what this ugly disease has done to the one I love.

I think that God gave most of the ability for nursing and sympathizing to the female. Men and women are different and this is one of the differences. Most of us men are the hunters, providers, and warriors. The men I know, including myself, don’t have what it takes to feel comfortable being a caregiver. But when faced with the necessity, I think I do a good job.

Linda and I have always been active. We have always enjoyed going places and doing things together. Unlike most men, I didn’t go to the ball games with the guys, I went with Linda. For the first two years that Linda was immobilized, I stayed home with her all the weekends and evenings. I got to the point, though, that I had to "break out," so to speak. I finally became aware that Linda was going to be this way for a long time and I still had the need to go to the ball games and car races. I had to get away by myself to take my mind off everything. I have, the last year or so, found ways and places to go for a Friday or Saturday evening of escape from the reality of our lives. When I first started doing this, I felt guilty, and many times would leave at half time because I felt I should be at home. I have learned to enjoy this free time and don’t feel guilty anymore. I enjoy my private... time but I would still prefer having the company of my little lady.

I just placed Linda in a nursing home, which I did with a heart full of love. She will have better and more constant care than I can give her because of my working. Her eighty-one year old mother had been very helpful, providing much of Linda’s care, and the cleaning, cooking, and laundry. Her help allowed me to keep Linda home longer than otherwise.

So many emotions are going through my soul right now; sadness, loneliness, fear, anger, and, yes, even relief. Her mother and I just couldn't deal physically or emotionally with caring for her. Her mother said, "No one would understand unless they have cared for a person with Huntington’s Disease."

Linda is content, and okay with the move. As I left the first time, she said, "Dad, I'm going to like it here.” Who knows why she would say something like that. Yes, it is a pleasant place, but that comment really grabbed me.

I checked her in on a Wednesday and she was having her best day in weeks. I went back Thursday, and she was the same; just as happy as she could be. There was very little chorea, no choking, no vomiting. I went back Friday, and I knew it wasn’t a fluke; she was happy and comfortable. I asked the social worker (Christy) what was going on, why the massive change? She said she had talked with Linda, and this was her explanation.

"She is eating more nourishing food," the social worker explained. "At home you fixed what she wanted, rather than what was good for her."

I told her that when I fixed healthy foods, she wouldn't eat them.

"Yes," Christy said. "But she is eating everything on her tray, and sometimes seconds.

The sociability aspect is also good. She is around new people, and she has people checking on her and taking care of her other than her mother and husband. You have taken the stress out of her life." I asked her what she meant by the stress. Christy explained, "She doesn't worry whether you will be there at 12:00 or 12:05. Also, she hated the fact that you were having to take care of her, clean up the various messes she made, take care of the house, and work."

I told Christy that she often apologized, and my standard answer was, "Linda, it's not your fault." Christy said Linda understood, but she still felt awful about it. Christy also said Linda told her she could be, "a better wife at the nursing home than she could be at home." That truly brought me to tears.

All this time, I thought placing Linda in a nursing home was wrong. I guess each situation is different. We are both as content as possible, and her symptoms are back like they were about a year ago. I told my pastor if anyone visited that didn't know what she was like, it would almost be embarrassing. They would wonder why she is in a nursing home.

I still pray daily for a cure for this ugly disease. Although Linda has probably progressed beyond where a cure would help, I would love to live in a world where no one would ever suffer as Linda and I and countless others have.

Used with permission; Faces of Huntington's by Carmen Leal-Pock
1998 Essence Publishing—All rights reserved.