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Content © 1999-2009
|As told by Christine
I can scarcely remember the years gone by when I first heard the words "Huntingtons Disease." Little did I know that it would change my entire life, and not entirely for the worse as one might think.
I guess my earliest memory of dating my husband, John, is that I was so comfortable with him. It was sort of like having a best friend and older brother all wrapped into one. It wasnt love at first sight, but rather a gradual warming that developed into a deep and committed love between us. Maybe that is why we made it through extremely difficult years.
John was always nervous and fidgety. As the years passed, HD was presenting itself, but we were not aware of its subtle and sneaky entrance into our lives. Gradually, John deteriorated to the point where he fell a great deal, was easily confused, could never finish a project, and slurred words. He went to a neurologist for frequent and severe headaches and was diagnosed with a movement disorder called Tourettes Syndrome.
Every time someone who had not seen him in a while asked me what was wrong, I would always answer, "The doctor says he has a movement disorder but its nothing serious; we learn to live with it." As time went on, he worsened, but the doctors had me convinced I was over reacting. Finally, in 1986, his company forced him onto disability and early retirement because he kept falling at work and was forgetful in his responsibilities.
At this point, his father pulled me aside and told me John had been adopted. Before Johns adopted mother died when he was thirteen, his father had promised he would never tell John about the adoption. I was angry not only for John, but for myself. When you marry someone you assume his parents are as presented. Upon hearing the news, we never considered a genetic disease. Instead, I was upset because I didnt know what nationality my children really were. Coming from a first generation German heritage, this was important to me. I was soon to learn how irrelevant that was and that it was the least of my worries.
After the news, a friend of the family asked if John had ever been tested for HD. I didnt even know what it was but went to the library and found a small paragraph about the disorder. Brief as it was, it was enough for me to know what had been going wrong all these years. I found a new neurologist and advised him of my concerns. Even with the lack of family history, John received a diagnosis on his first visit, though I didnt tell John right away. Ive learned in life that these things are best not planned, and circumstances will present themselves in the future to allow the truth to emerge.
Life went on and we all adjusted. By the time of his diagnosis we had three daughters, and in spite of his illness, we were happy. Although not working, he could do simple chores around the house, get the kids off to school, and be there for them when they got home. I continued to work outside the home taking over the role of bread winner. By 1989 and 1990, he had reached the point where he was having difficulty swallowing, couldnt shower, shave or dress himself. I knew that home health care would be needed to assist in his daily care while I was at work.
My middle daughter, Jamie, age twelve at the time, began having seizures. She had always had speech problems and frequently stuttered, but by this time she tested low enough for special education classes. I still had not considered Huntingtons as a possibility since I considered myself well read on the subject, and juvenile HD was supposedly rare.
By the end of 1990, John couldnt swallow, was constantly choking and had lost forty pounds. The doctors suggested a feeding tube so that is what we did. We did not realize we had a choice. On Christmas Eve he left the hospital and I continued to take care of him at home.
The strain of caring for him, parenting three children and working became increasingly difficult. Dementia appeared with a vengeance, wreaking havoc and producing violent temper tantrums. The alarm awoke everyone in the house as he climbed over the side of the hospital bed all night long, dragging the feeding pump with him. With all that was going on, I was of no use to anyone. It became obvious that a nursing home was needed so that I could care for my children and myself, and still hold down a job.
Jamie, by now thirteen years old, was diagnosed with HD. On the heels of the diagnosis, Jennifer, my youngest at age nine, began showing some fidgety movements. She was already in speech and special education, following Jamies path. I knew in my heart that HD had claimed another victim, but could only handle the crisis I was facing with John and Jamie at the time. I refused to consider that Jennifer had it too. During the summer of 1991, I took the children on a long weekend to an out-of-state amusement park where Jennifer had a seizure. While the paramedics kept assuring me that seizures are common in children and can be the result of many causes, the incident was the confirmation I needed; Jennifer was following in her sisters footsteps.
John went into a nursing home in February, got pneumonia in August, and died on September 10, 1991. I felt an immediate sense of tremendous loss but also an inner peace. My daughters each took his death in their own way, and I was pleased that we had so many happy memories. While I had felt like a single parent and had the full responsibility of the house and children long before John died, grief is still a long and necessary road we all must follow. Taking a shortcut or going over or around it only prolongs the process.
A few months after John died, I noticed my sixteen year old daughter Kim making some awkward movements. I chalked that up to being a clumsy teenager along with the slurred speech being because of her braces. She was having difficulty keeping up with her classes academically, but I reasoned, "Ok, shes not a genius, but I can live with that." Then one day she displayed a typical HD movement, and I knew she had it too. However, in my customary style, I tucked it away until I could deal with it since there was nothing to be done at this point anyway.
As the months passed, however, Kim began exhibiting aggressive behavior at home with her sisters and myself. The explosiveness became violence and I finally reached a point where I realized she would need to be on medication, and I would need a diagnosis to justify the treatment. She was diagnosed, referred to a psychiatrist, began taking an anti-anxiety medication and going to counseling two or three times a month. Most times, home life was tolerable, but thats just it... barely tolerable. At times, in my day to day life, I was hanging by a thread. Most nursing homes wont take one HD patient. Can you imagine living with three?
I gave up asking, "Why me? Why all three? Why was I picked to carry this burden?" I dont know and I dont think Ill ever know. HD, like any other disease or crisis in life, has its benefits. Looking back, I wouldnt change a thing. My faith has deepened and when I ask God for strength, I get it. "Why" doesnt matter anymore. I have a wonderful family and friends who are a great support. When I realized I would only have my children for a short time, I tried to make their lives the best I could and I tried to cherish them in every way possible. I also forgave myself for losing patience and forced myself to get away from time to time. Im blessed with a wonderful employer and truly caring, compassionate friends, some of whom face HD in themselves or families, but many more that dont.
On April 10, 1995, Jamie died at the age of sixteen, with Jennifer taking her last breath on May 17, 1997. I am now the caregiver of my oldest daughter, Kimberly, who is twenty and confined to a wheelchair with slurred speech and still difficult, but tolerable, behavior. Her smile and giggles are my reward.
Yes, I do feel cheated. But I couldnt be more proud of my daughters than if they had won the Nobel Prize, because they are the most courageous of heroes. So many people, teachers, doctors, nurses, and aides have told me what a joy my children are and what an inspiration I am. Maybe this is what Gods plan was for me. He gave me strength so that I could help others. All I know is that I am not the same person I was before all this happened to me, and my life has become richer and more fulfilling because of these experiences. I hope that someday you will be able to look back at your life and say the same.
Used with permission; Faces of Huntington's by Carmen