|
Living with ALS |
|
by Paul Lowe |
|
|
|
I have been active all my life working hard on the job, around the house, and when I played. Relaxation seemed a waste of time when I could accomplish something more. Fortunately, my health has been good, allowing me to do so. I worked for over 40 years for the United States Army Corps of Engineers, in the states, in Europe, and in Latin America. During my playtime, I have raced sports cars, motorcycles, and, most recently bicycles, as well as touring with all three. When I came home to San Antonio, from Panama after closing down the Corps of Engineers Real Estate Office and retiring for the second time (in October of 1999), I noticed a slurring of my speech and some problems with hand coordination and strength. I visited our family doctor who sent me for an MRI, the results of which worried him, so that he referred me to a neurologist. After MRI's, ultrasounds, and other tests, I was informed that they hadn't been able to find the source of my problems, but suspected that I might have had a stroke. I was not aware of when that could have happened, and was skeptical. I continued with my athletic activities, which included running and cycling, with the thought that the exercise would reverse the effects of a stroke. By January of 2001, however, my speech had further deteriorated and my performance in running and cycling was declining as well, and I continued to lose coordination in my hands. The run in the Mayor's Challenge 5-miler race was extremely hard, as was the 100-mile cycle ride to Shiner in April of 2000. Even though I took a second in the State Senior Games in Cycling time trials in November 2000, and qualified for the Nationals at Baton Rouge to be held in July of 2001, I knew that something was not right because of the effect it had on my body --TOTAL EXHAUSTION! I was not used to this. Back to the doctor I went and was referred this time (in January of 2001) to Neurologist Dr. Wayne Gordon. After numerous tests including the needles in the arms and legs and shocks to them, Dr. Gordon diagnosed ALS. He sent me on to Dr. Carlayne Jackson at the University of Texas Health Sciences Center for confirmation. Dr. Jackson, after running many more tests, concurred. At least now, I knew what was wrong. Dr. Jackson allowed me to continue riding my bike, as long as I didn't stress myself, and introduced us to the South Texas Chapter of the ALS Association and the clinic. I don't know what we would have done without the support of Dr. Jackson, the ALS Clinic, and the ALSA chapter with all the wonderful staff. In March of this year I had a feeding tube implanted, and am now using it 100% of the time, since I can no longer swallow food. My last bicycle ride was in July. I can't do it any longer. Our life is changing, as life does, but you just have to learn to accept such changes. I use a Bipap every night to help the lung muscles, and I have a comfortable mask that allows me to use it all night. That is an improvement. The South Texas ALS Chapter has come to our rescue with the loan of communication devices since I can no longer be understood when I speak. Recently I picked up a motorized wheelchair from the lending closet, as my mobility is now limited. I didn't realize how much fun those things could be. It has given me back the mobility I hadn't fully realized I'd lost. Now my wife Helen and I can go on extended shopping trips and walks and engage in other activities that had been curtailed. I thank God every day for all the blessings that he has bestowed on me throughout my life and for my caregiver, Helen, without whom I couldn't make it, and for all the wonderful people here in San Antonio connected with support for ALS patients. They truly make life continue to be worth living. Thank you all. |
|
|