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Living with ALS |
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By Beverly Sablik |
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I knew something was wrong when I started falling – a lot, over a six-month's period. One time I was down at the Municipal Auditorium going down a ramp. My husband Marty had turned only for a second before I was lying flat. Another time this happened at Sea World when we were together. But Marty was not there the many times when I fell alone at home. By January 1994, I knew that I had to see a neurologist. Dr. Allen Gruber put me through a battery of tests, including spinal tap, and a test, which included little electric shocks. After all the tests were done, I was amazed that the doctor knew exactly what was causing my falling. I was diagnosed with PLS, a rarer form of ALS. The prognosis was that I could live with the disease for ten to fifteen years. But it had already taken hold, so life was going to different. At the time I was working as a registered nurse at Methodist Hospital with newborn babies. Two years prior to my diagnosis, I was beginning to feel very exhausted and tired after work each day. That was probably a symptom of the condition starting to set it. Soon I began to realize that I could not continue to work with the ever-present danger of falling while carrying a baby. I was given a disability retirement. I then became a homemaker. We have four children, and all but our son were young adults at the time, they were all living at home. Our daughter, Karen, married in July of 1994, and our oldest daughter Jeanne was ready to move into her own apartment. There was always plenty of excitement in the house and I was in the thick of it. But I could see that I had less energy and often felt exhausted. I traveled with my husband to Poland in August and also visited England. I remember tripping many times. When we went on tours I could not keep up with the group. At one stop, I finally had to just stop and wait in a café. It was all very embarrassing, and I felt foolish and a hindrance. Later Marty talked me into going to Tasmania, a big island off the southeast coast of Australia, with him for five weeks. Our host loved the natural beauty of the land, and found a cane for me to use as we walked through the woods. It was then that I realized that I needed a cane, and when I returned to the U.S., I bought one immediately. Meanwhile we began to become acquainted with people in The South Texas Chapter of The ALS Association, and went to as many meetings as we could. They had equipment to loan us if we needed it, and I have used a shower stall bench. The support group has meant a lot to me. It helps to have so many friends who are dealing every day with similar experiences. The walks through the woods that I took in Tasmania are now something I can no longer attempt. By the spring of 1995, a three or four block walk in downtown San Antonio, even with a cane, just did me in. However, I feel fortunate that, since then, the progression of the illness has been slow. I am still able to get around with a cane, but I now also use a walker for shopping in the mall. I have learned to content myself with shopping at a single store on a given trip to the mall. My arm strength has lessened, and Marty often opens jars for me. I can't swallow big pills very well, and sometimes my speech is not as clear as it used to be. I speak more slowly than before. Marty takes me to the San Antonio Spurs games, but for that we use a wheelchair and sit in the disabled section. It took me a long while to agree to a wheelchair. The wheelchair was much needed on a recent trip to Italy in March. After my wheelchair was taken out of the bus at each stop, Marty and other individuals from our tour group took turns pushing me around. Without the wheelchair, I would not have been able to see so many wonderful things. The highlight of the trip was a papal audience in Rome, which was held outside on the steps of St. Peter's Basilica. The Pope gave six talks in six languages. When his talks were through, the ushers put all those in wheelchairs in a line and we gradually moved in the direction where the Pope was sitting. He gave us each an individual blessing, and an Italian photographer took the picture accompanying this article at that very moment. So, I feel very blessed. I have been blessed by the Pope. I am blessed to have my husband and wonderful children, and my wonderful brothers and sisters and parents. The Lord in many ways has blessed me. It is so important to recall and remember the blessings that you have, particularly when you also have an illness like ALS or PLS to bear.
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