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Content 1999-2009
CureHD Foundation
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As told by Louise Wilkinson...
As a young girl, my grandfather used to scare me when he drove us around. My brothers, sister and I hated the jerky way he drove; one foot on the gas and one on the brake. Often, both were going at the same time, it seemed. He always appeared so nervous and impatient. He just couldn’t sit still. Later, it became difficult to understand him when he spoke. Since he had been an alcoholic in his younger years, everyone in the family thought it was nerve damage due to his drinking. My father and uncle (his brother) were also alcoholics, and we wondered if they would turn out the same; bouncing off the walls and flinging their arms around. My father died at age 54 so we never really saw how he turned out. My uncle turned out just the same as Grampa.

We were convinced that alcohol caused it and his doctors all seemed to agree. We, my brothers, sister and I, all knew that we had a predisposition for alcoholism, and each in his own way struggled with it. The only thing, I think, that kept us on track was the fear of turning out the same as Grampa and our uncle. We all joked about them, but secretly feared that we would be the same.

In 1993, two years after my uncle stopped drinking, he was in the hospital because of tuberculosis that he has in five separate locations throughout his body. While in the hospital, a doctor saw him and she recognized Huntington’s symptoms. Although that word was mentioned about Grampa, I don’t think he was ever tested as there was no DNA testing available. No one really took it seriously because we didn’t know enough about it. Again, we attributed his symptoms to alcohol.

My uncle was tested and told that he had Huntington’s disease. At first, we all felt bad for him. But we didn’t know enough about the disease to be concerned. We talked to my aunt about it. My cousin, their daughter, sent me some abstracts about the disease from medical journals. After reading them, I started to think about the possibilities that it was genetic and that I could have it.

For years, since my mid-thirties, I had been feeling that something wasn’t quite right about me. I couldn’t put my finger on it but other people in the family would say things like, "You’re just like your uncle, clumsy and forgetful." I was consistently getting worse. I never slept well at night. I seemed to have the need to move all the time. My legs were never still. I also noticed when I was teaching, my speech didn’t come as easily anymore and my mind would go blank for one or two seconds. I was having more and more trouble remembering students’ names—even students that were very familiar to me.

Although everyone experiences these things, in the back of my mind, I knew that the occurrences were too frequent to ignore. I began developing coping mechanisms and excuses for tripping, falling down and for my stumbling speech. I would say I had too much on my mind, or I was tired, which was also true. I seemed to second-guess myself all the time and went over things many times so that I wouldn’t forget appointments or meetings. I even frequently forgot to check my day book. My school schedule was difficult to keep straight as there were always so many things going on at the same time. I often got confused. I still do, but I manage.

When I learned about the Huntington’s, inside, I knew. Everyone else said that I was worrying too much and making it worse; everyone, that is, except my husband and my kids. My husband had been concerned about me and knew that it wasn’t "normal" forgetfulness or clumsiness.

It took me several months to decide to get tested. I guess I’ve always been one to want to know for sure about things because my mind drives me crazy wondering. I obsess. My husband and I talked for hours about it. We talked to my aunt about her life with my uncle. She said that she may have been far less frustrated and judgmental had she known his behavior wasn’t just because of his drinking. My uncle had severe mood swings and was miserable and nasty much of the time. He had no patience with anyone, especially with anyone telling him he had no patience. He had bad moods and got frustrated easily. I related to that as well. I had even been put on anti depressants and had to get therapy for rage attacks in my late thirties. My aunt said that my uncle showed those symptoms in his thirties.

What really convinced me to get tested was my uncle. By the time my uncle retired from work, he was too far into the disease to do all the things they had planned. He can’t golf much anymore and their plans to go to Arizona every winter have become very hard on them. My aunt has to do most if not all the driving. He is only sixty-seven years old and he has trouble eating in restaurants as he can’t sit still and chokes often. He is always falling or banging into things. In the last year, he has broken ribs and a wrist as well as sporting several bruises on his body all the time. This also happens to me except I don’t break things because I am more careful than he is. At first, many people thought he was drunk when he went to a restaurant. Since they live in a small town, everyone is getting used to him now.

We decided if I had the disease we would plan our lives for an earlier retirement and move to a better climate without the ice and snow. Also, we decided that a small town would be better as my uncle has lots of support where he is. I contacted the genetics department at the Children’s Hospital and went in for a consultation. I was shown a video on Huntington’s but it was mostly about the team that would be working with me: a counselor, a psychiatrist and a neurologist. Each of them spoke but none of them really explained what to expect. It seemed that I wasn’t much more informed about the disease but maybe that was because it never sank in at the time. I did much research on my own. The counselor and the psychiatrist saw me a couple of times, and I only met the neurologist once. For the most part, they seemed to be interested in finding out whether I could handle the results, positive or negative. I was frustrated with having to wait. I just wanted to get on with it.

In my heart, I already knew, and I guess I was looking for validation. It angered me when I talked about my symptoms and all I heard was, "Well everyone experiences those things. That doesn’t mean it’s Huntington’s symptoms." That phrase drove me to distraction, I heard it so many times. I thought, "do they think I’m stupid? I know everyone does these things. That’s one of the reasons Huntington’s goes undiagnosed for so long. There was always some 'explanation' for these things. But, I know me. I’ve lived in this body with this mind for forty-five years and watched two people with Huntington’s in my family. I knew."

I did understand friends and family downplaying it, but not the "experts." The one exception was the psychiatrist who said that everyone knows their own bodies and minds better than everyone else. "Thank you," I thought. The rest don’t matter because it’s irrelevant whether anyone else thinks it’s Huntington’s or not. I have to live with it and compensate, whether it’s psychosomatic or not.

After about three months, I had an appointment with the genetic counselor and the neurologist to get the results. My husband went with me, and I have to admit I was nervous. When we got the results and they were positive, I had mixed feelings. The neurologist kept saying that I had the gene but that didn’t necessarily mean that I was showing symptoms. That’s like being a little pregnant. She kept saying that I wasn’t showing any neurological symptoms and as far as she was concerned I didn’t have the disease yet. Now this was based on pricking my feet and watching me walk. I had been telling her about my symptoms all along, and there she was telling me that I didn’t have any.

I remember a nurse once telling me after eighteen hours of labor that the pains and contractions could stop at any time and I would be sent home because I hadn’t dilated yet. That was the worst feeling in the world. Excuse me, that baby was coming whether I looked like it or not! I felt the same this time. I just wanted to get out of that office as fast as I could. Talk about an emotional reaction. But at least inside I finally had my validation and knew that I wasn’t crazy. It didn’t really matter what name the doctors put on it. I had wondered for years what was going on with my mind, and now I knew.

For the first few weeks after finding out, I intellectualized everything. I went about accepting the news on the level of practicality. What do we do now? I talked about it to my family and a few friends. Most of them had the same reaction we initially had. What is Huntington’s? What does it do to you? Is it contagious? Don’t worry about it, I do those things too, everyone does.

Over the next six months, everything I did and said, I related to the disease. I got depressed watching my uncle and read everything that I could get my hands on. I obsessed. At first I was afraid to tell my colleagues. I told most of them, one by one, as an opportunity arose. At times I even used it as an excuse, letting my mistakes be explained away. I revisited the psychiatrist on a few occasions. He kept reassuring me that I was going through a normal response. I guess the things that scared me the most were the thoughts of dementia and helplessness. I’m an artist, and the thought of not having control over my muscles is terrifying to me.

My older brother went into total denial at first. He just didn’t want to think about it. I didn’t press him and since we weren’t close anyway, he was able to put it off for several months. My sister worried a little more, but didn’t want to get tested as she was getting married again, has no children and is financially secure. She doesn’t think it would make much of a difference anyway and feels that she doesn’t have any of the symptoms.

My brother called one day and asked me why I got tested. In the beginning I thought it was only my choice to be tested. Then I realized the results would affect my husband and sons. I told my brother I got tested for my husband and children because of what my aunt went through, having to live with it. I felt my husband deserved the right to prepare himself for the future.

I mentioned that his wife and their five children had a right to plan their lives. A couple of months later, my brother decided to get tested. He is presently going through the prediagnostic period and we haven’t talked about it.

Our youngest brother would like to get tested, but lives so far from any major city that it isn’t feasible for him to do it at this time. He is about 19 hours from Vancouver, which is the nearest genetic testing center. I know he and his wife worry about it though.

My friends reacted in several different ways. Our best friends arrived with a teddy bear mom hugging a baby to help me feel better. They have been very supportive. We joke about it with them and are able to be completely natural with each other. Other friends backed off. Still others, more casual acquaintances, don’t treat me any differently. Some treated me like an invalid at first.

Professionally, I reacted very strongly. At first I felt a great loss because I was ambitious and was heading for administration in the Arts Council. I was on several committees and had plans. My immediate reaction was to quit my committee work as I couldn’t keep my mind on it and felt that there was no use anyway. I also decided not to pursue a high school teaching position, opting for a safe environment until long term disability kicked in. I was scared.

Time passes even with Huntington’s Disease, and somehow I have managed to get through each day. I realized how much I love teaching and so I now have a high school position and I’m planning to go back to my committee work. I have even joined a theater group and am going to be doing dinner theater. I will admit that, although my fears have settled down, they will always be there, and I know that I have to live my life to its fullest.

My husband and I are not as complacent as we used to be. We are trying to enjoy life as it comes and are consciously not putting things off. We bought the house we were renting and more life insurance. We have set definite goals for the future. We play a lot of golf and I have really taken an interest in my garden. We put in a goldfish pond and fountain in the back yard and find it is a great place to relax when things get us down. I’ll also admit that Huntington’s Disease is still on my mind. However it is not ruling my thoughts, and I have settled down quite a bit. Life goes on.

The end of the school year is only weeks away and this has been quite a year for me. I guess because I started the new job and am no longer in my comfort zone, I have been hyper sensitive to the disease. I also took on the acting and found it stressful, but fun. It’s almost as if I have to fit an entire lifetime into a short period of time.

My symptoms have definitely increased. I notice a big difference between the beginning of the year and now. This year has been tough as the myoclonus* seizures are bad—over one hundred a day if I don’t take my medication. Even with the medication, I still jerk when I’m relaxed. It is not that difficult to swallow but I am now conscious of it because sometimes it takes me two or three tries before I get something down. I almost never eat anything without a liquid. It seems as if there is always a dry spot about two inches down my throat. I also have to clear my throat a lot.

I have "come out of the closet," so to speak, at work with the administration. I am very fortunate to have security in my job and realize that it must be terrifying for others who do not. I am free to talk about the disease now, though I spent my first year at this school trying to keep it from the principal and vice-principals. I wanted them to see me as a normal teacher. It worked.

They didn't know and said that I would always have a job teaching there if I was able and not to worry, they would be supportive.

Another year passed by, where did it go? It seems as if time is more precious now than ever and when I lose my sense of time, I am sad. This has been an eventful year, my youngest son has now graduated and both are working full time, so they are in and out of the house a lot. They have a core group of about nine friends that all hang out together and our house is the central meeting place. Since they’re both of age, the beer usually comes here too.

I find that I can’t tolerate it as I used to, and they have to walk behind my chair from the back door, through the family room, and downstairs to the fourth level, "the dungeon", I call it.

The constant traffic irritates me and makes me nervous. When I’m watching television, I tend to get lost now, and they will come up behind me and give me a hug or kiss and say, "Hi, Mom." At 11:00 p.m. and later, it’s a bother so we’ve had to put a stop to it. It’s a small thing that never used to phase me at all; now it does.

Roy, my wonderful husband, is on twenty-four hour alert now and I feel sorry for him. He always was a caregiver, but now I know he has to check everything for me. I forget to turn things off or I start something and then get distracted two or three times. Sometimes I forget what I was doing in the first place. I’ll be looking for something, I seem always to be looking for something I misplaced, and I’ll see something that I haven’t seen for a while. That will start me off on a new journey. I am sure it's as frustrating for Roy as it is for me.

I have several things that I have started and never finish; ironing is my worst. Roy asked me two weeks ago to shorten some shorts for him but there they sit. I bought two sheets to sew together to make a cover for our futon, but there they sit. I still haven’t painted my two cement frogs that were blasted in the last hail storm, but there they sit. I just can’t seem to follow through with tasks and then I forget all about them until the next time. When I think of it, most of the time I don’t have the energy or motivation to do anything.

As wonderful as the administration has been, it is getting more difficult to do my job each day. My memory is getting more erratic and I have trouble typing. I have been trying to make a decision this summer about whether to keep teaching. My neurologist, psychiatrist and physician all think that I should quit, as it is too draining and taking all of my energy. I have to agree. I don’t have to worry about money as I have long term disability insurance through my job and a pension that I can get from the government. Once I am not working, it will be like getting a raise. I am unsure about giving up such an important part of my life. I love teaching and teaching loves me. The problem isn’t the teaching so much as the planning, scheduling and marking. Sometimes the kids wait two weeks to get projects marked and believe me, in high school they let you know.

So I have pretty well decided not to go back this fall. It will be better for the school if I don’t go back in September. This way, they will be able to hire a teacher for the entire year, instead of a replacement in December.

Loretta, my HD social worker, has lots for me to do for the HD community. I think it may just give me the grounding and focus that I’ll need while I adjust to being a lady of leisure. I don’t want to feel as if I’m useless and I don’t want my brain to go into neutral, watching soap operas all the time and forgetting to wash my hair. I belong to a spa so now I’ll have time and energy to get there regularly since it’s going to be part of my routine. I intend to become more involved with our local Huntington’s chapter and do other types of volunteering as long as possible. Just because I am slowing down with HD, it doesn’t mean I am not still the same gregarious person who embraces life. I still need people in my life and have a lot to give to those in need.

My sons, who are still living at home, will be company for me, and I have Duffy, my toy poodle, who follows my every step. I have to admit that is pretty hard for Duffy with the chorea. The hardest part is going to be my poor husband coming home tired, and I’ll be ready to do something. He’s a real homebody and doesn’t like going out much. It’s been a problem for years and I fear that the more dependent I become, the more house bound I’m going to be.

Editors note: Myoclonus is an irregular involuntary contraction of a muscle.

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