Monday, May 9, 2011
Mary Kay's Story
My name is Mary Kay and I am a 74 year old ALS patient living in northern Michigan.
Five years ago something strange happened. It seemed as though all my friends were going deaf at the same time. No matter what I said people would ask me to repeat, sometimes more than once. I didn’t realize my speech was so slurred people could not understand what I was saying. Not long after that I noticed that my face was beginning to droop. I didn’t make a connection between the two conditions. Looking at my face I thought I had suffered a little stroke. Since I seemed in good health I didn’t give it a second thought. Next I started drooling. Again I didn’t pay any attention, thinking it was a sign of old age. It would be close to a year later before I was to learn the real cause of my symptoms. I was still not a believer, but a trip to Mayo convinced me that I did have ALS. My ALS is bulbar which makes it impossible for me to speak or swallow.
The long trip home from Mayo gave me many hours to ponder my predicament. I thought of my friend who had died of ALS twenty some years ago. He was totally paralyzed and unable to speak, lying in bed in a nursing home. That thought struck fear in my heart, and also made me realize that I had a limited time in which to finish anything important that I had not yet accomplished.
I made some decisions and wrote my final list before I reached home. I figured it was my life, my disease, and I could make my own rules. I would not dwell on ALS, nor would I talk about it constantly. If people asked me how I was doing I would say it was a good or bad day. Nothing more. I would resign from the organizations I had been involved with and spend what time I had left with my family and friends. I would get my Trust in order, finish the book I was writing, and have an elevator installed in our home. I started praying that God would keep me calm, positive and productive. I soon changed that prayer asking to be calm, positive and patient. My disease affected many people in addition to myself. Learning how to be patient with them is not always easy.
Along the way I learned some important, and often disappointing lessons.
My biggest disappointment was how little knowledge the medical community had about ALS. That set me off on a mission to educate as many people as possible. I learned that I had to be pro-active and creative. After all, this was my only body we were talking about and it was very important to educate myself, not just about the many unpleasant symptoms, but also about what equipment was available and what kinds of help was available in our part of Michigan. I built myself a network of helping people including Denise George my ALS Michigan Patient Services Coordinator, and a file of equipment information. I was ready. When it became too difficult for me to swallow I knew I needed to be fed by tube. My family and friends put together a website where they could sign up to come help feed me. I talked with my pharmacist about which pills could be ground up to go in my PEG Tube. When I reached the point that I was regurgitating the food from the tube which caused choking and aspirating I knew I needed a tracheotomy. When my muscles failed to the point that my mouth would no longer open wide enough to brush my teeth comfortably and I was unable to spit out toothpaste I started using a child size toothbrush and mouthwash. Toothpaste made way too much foam and mouthwash was easier to deal with. My educational mission for both myself and others goes on constantly.
Today my arms are beginning to weaken but my legs are strong. I am hooked up to a system twenty four hours a day that keeps my trach well humidified. Another machine is hooked up in the evening to feed me by food pump over night. I need to use a nebulizer four times a day and an airway clearance vest twice a day. Each morning and evening someone has to suction out my trach to keep my lungs clear, a job that takes about an hour and a half. It seems my life is controlled by equipment, care, and helping people.
My symptoms have gotten worse in the past five years but I try to keep my attitude the same, praying to be calm, positive and patient. Each day my life is a challenge. I like to look at it like an adventure in which I get to make my own decisions.
Back at the time I was diagnosed with ALS one of the things on my list that I wanted to accomplish was to finish the book I was writing. Having the book to work on was a real blessing for me, giving my mind a positive place to be every day so I didn’t have time to worry about my ALS. Keeping busy and positive has been a very important part of remaining in somewhat good health both physically and mentally. I did finish the book. In 433 pages Torch Lake, the History of Was-Wah-Go-Ning includes 673 maps, drawings and old photographs and a story covering 10,000 years of life in the area where I live. A major undertaking even for someone in good health. For me it was a lifetime accomplishment and a miracle.