Ch-Ch-Ch-Changes

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In thinking about changes and adjustments with ALS, I am reminded of a story I heard on the radio about 15 years ago while I was driving around Atlanta during a sales-blitz for my then-employer Cayman Airways. At the time, I roared with laughter, but I don’t find it so amusing anymore. The radio guy was talking about Walter Hudson, a 1200-pound man in Hempstead, Long Island. Hudson had gained so much weight that he was eventually confined to his bed. Before that, he worked, until one day he couldn’t fit through the bedroom door to leave. Well, the radio DJ said “I’m trying to imagine what happened the day Walter Hudson realized he wouldn’t make it to work that day because he couldn’t get through the door…..hmmmm…….let’s all imagine the phone call ‘Hey, this is Walter. I’m calling to say that I’m not coming to work today. I’m calling in fat!”

I don’t find it so funny anymore. One day I had to call up my school and tell them I wasn’t going to make it to work anymore. Not because I didn’t fit out the door anymore. I couldn’t make it to wor anymore because my school wasn’t accessible and it wasn’t safe anymore to fold up my walker, have someone help me up the two flights of steps—one outside and one inside—just to get into the school building. Once inside, there was no elevator, so I couldn’t get up to the third floor where the classrooms were. My principal sent me classes of students to the auditorium, with 10 textbooks for 60 students. So when it was obvious the Department of Ed was not going to find an accessible school for me, I had it. So you could say I called in “fed up” or “resigned to the illness”.

And so it is with ALS. One day you can; the next day you can’t. If ALS affords us any luxury, it is the luxury of gradual change. The slower the progression, the longer you have to adjust to each change. At the ALS clinic, they tell you to always prepare for the worst-case scenario, which is bound to come sooner or later. Because of the time it takes to get equipment, you order the wheelchair while you can still walk, and the augmentative speaking device, or “aug-comm” while you can still speak. Between the first evaluation, through the paperwork and approval by Medicare, to final delivery, can be several months. In my case, it took a year to get my wheelchair. Since I needed one before I got my own, I had to take advantage of the ALS loan closet.

There is a threshold you cross, that reminds you the disease is progressing. One day your voice is a little too nasal, on another day, you sound drunk. Until one day, too many people are not understanding a word that comes out of your mouth. One day you are walking with a cane; the next day you are falling way too much. You graduate to a walker, until one day, you can’t get down one block. And finally, you can’t even stand on your own. It is difficult to plan for that “worst-case scenario”, because you can’t imagine it ever happening. But it does; it always does.