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Faithfully Forward – My ALS Story Imagine that you are working in a career that you enjoy and has allowed you to provide for your wife, and your three kids. You’re looking forward to watching your kids grow up, walking your daughter down the aisle when she marries, helping your sons with the decisions that they’ll face as they mature. You have the good fortune of having saved for an active retirement, and then you are diagnosed with a fatal disease that will inevitably take everything away from you. Unfortunately, I don’t have to imagine this tragedy, because it has happened to me, my wife Sharlene, and our three children, Alicia (17), Bradley (15), and Ethan (13). In August of 2002, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s Disease. In early 2002, I knew that something was wrong. I began experiencing mysterious muscle twitching and cramping, I tired easily, my gait seemed difficult and my speech began slurring. I initially attributed these symptoms to side-effects of some new asthma, allergy, and blood-pressure medications that had been prescribed a few months prior. In March of 2002, as my three children and I played in a swimming pool, I noticed that my upper body strength had diminished to the extent that I could not even lift my 9-year-old son to toss him in the water, an activity I had previously performed easily with all three of my children. My wife and I joked about how out of shape I had become. Secretly, I was concerned; but not to the point of feeling the need to get a medical check-up. After all, the previous fall I had lifted heavy logs in and out of my trailer, swung a splitting maul, and split and stacked firewood, for our wood burning stove, with ease. Throughout the summer of 2002, as I performed at my job, and on family camping vacations, I noticed that, in spite of discontinuing many of my prescription asthma and allergy medications, the symptoms were becoming worse. At work, people began noticing changes in my movements, as well as my speech patterns. I could no longer pretend that there was nothing wrong. In August of 2002 I made an appointment with my family doctor for a checkup. As I related the symptoms to him, he made no attempt to offer a suggested method of treatment. Rather, he told me that he wanted me to visit a neurologist at the Michigan Institute For Neurological Disorders (M.I.N.D.). I saw Dr. Louis Rentz, the director of M.I.N.D. After a series of tests and evaluations, Dr. Rentz informed me that I have Amyotrophic Lateral Sclerosis (ALS) more commonly known as Lou Gehrig’s disease. I accepted the news with no more concern than if he had told me that I have a cold. However, that lasted only until I was driving home, suddenly remembering an episode of the popular TV show, “Touched By An Angel”, in which a man with ALS had died. That memory quickly focused me on the gravity of the news I had just received. Upon my arrival home, I was faced with the gut-wrenching task of breaking the news to Sharlene, my wife of (then) sixteen years. I have been blessed with an ability to get outside of myself in times of crises, and to take an almost clinical approach to what should be an emotional event. This ability served me well at this time. It allowed me to be a rock for Sharlene, at a time when she needed me to be. It was important that she have this time to cry, without the added burden of feeling a need to comfort me. There were to be plenty of opportunities for that later. |
Mission Statement ~ "Faithfully Forward is dedicated, through the efforts of family and friends, to promoting awareness of ALS (Lou Gehrig's Disease), to offering support for Wes Smith and his family, and to encouraging those searching for a cure." If you are experiencing problems with the navigation of this website, please send an e-mail to webmaster@faithfullyforward.org. |
