The ALS Association

ALS Came Out of Nowhere

Dave A. Buffalo, New York

Out of nowhere came ALS. I have lived a good life, with decent parents and wonderful grandparents, being well-fed and healthy in every way. I had all kinds of adventures, playing football and baseball, Scouts, trains, church, got good grades, and went to college. I enjoyed dating girls and dancing. I married someone I truly loved and admired. We had a son of whom I am (still) very proud. I even liked work. Then came the trials and tribulations – lost jobs, a major move, divorce, not seeing my son, and bankruptcy. When I remarried, I thought I was done with the worst. Ha! Fast forward: while doing a painting project, I noticed an area which would not wash off. My doctor wrote on a script, “possible muscular dystrophy” and instructions to see a neurologist. The only thing I knew about MD was the Jerry Lewis Telethon. The area on my hand appeared shaded due to atrophied muscle. Sure, I am lucky my doctor knew what it was, and that we have an ALS clinic several blocks away. But then, there is little that can be done. There is no known cause for ALS; there is no known cure. You just die, sooner rather than later, and you have a good idea how it will happen. It is not nice. So, I started living this new life where you do this weird thing of counting up from dates marking things which are shutting down. The big one is, “When were you diagnosed?” I get two of those: after the first three neurologists saw and tested me, it was February 25, and after confirmation from two more, it was May 6. My shrink tells me I am doing all the right things, if you consider intellectualizing and studying about ALS to be the right thing. Eventually, I will break down and cry, and hopefully someone will be there to comfort me. I actually do have many helpers and friends. Most, however, have no clue what a “PAL” goes through. On my real dog days, I am very glad to have my dog curl up beside me or sit on my lap. For my wife, attempting to be my primary caregiver, it has meant meltdowns, saying “No, I can’t,” obsessing over the cost, and using God and awful in the same sentence. I also am challenged to feel there is a God Almighty in this house. So, honestly, when the associations trot out the Lou Gehrig line, “Today I consider myself the luckiest man on the face of the Earth,” please donate your time, money, and effort to help those with ALS, because there is nothing “lucky” about it.

 
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