“Shoot, these are too dirty to use like this”, I realized. The fifteen-foot-long aluminum frame rails that I was using to install new windows at the Cathedral of Pensacola, Florida had been laying on the ground during a rainstorm. I was in the usual hurry of someone who spent too much time away from the people they loved. As I went down each of the long rails, spitting on them as I chased with a wad of paper towels, a rather jovial African American lady, sitting in her car at a red light, yelled to me, while laughing, “You’re gonna run out of spit!”. The light turned green. She drove off. I kept spitting and wiping. I think that we both wore the smile of an organically funny scene for a while. I did not run out of spit, though I would later regret this superhero talent.
Six years later, five of which has been spent riding the absurd, one-way flow of ALS, I’ve come to the point where loosing my speech and the ability to swallow is distracting me from life. Threatening and impossible to ignore, my wife has limited shelter from the sometimes relentless pestering.
We use drugs to lessen it. We’ve recently had botox injected into the saliva glands to lessen it. When I die, someone’s going to have to take out my saliva glands and beat them to death with a stick. These medical interventions do reduce the volume, most of the time, and we are grateful. It would likely be impossible without them. Like so many of the challenges with ALS, however, many of the solutions present a new set of problems. My reduced amount of saliva is often more like glue. I find that you have to make a choice of whether to keep up or not, in between does not seem to work at all. If you can’t keep up, the reliance on, and the demands on the caregiver skyrocket. Life gets chopped up into the little bits that span from one suction to the next with the suction machine. Did you know that the average person produces one to one-and-a-half liters of saliva per day? I did not!
For anyone in our predicament, we feel like it took about one-and-a-half to two weeks for the botox to reach its full effect. It seems like an effective treatment, and we are grateful to our ALS clinic doctor for doing this, but there are no magic bullets.
I wish there weren’t so many trade offs woth every treatment for this insidious disease. 😥
Love you to pieces, David. 💜