Endless Enigma

June, 2021

ALS has a long list of symptoms. You’ve heard me whine about some of those afflicting me if you have read this blog. Others include muscle cramps, which I have surprisingly avoided, and random outbursts of crying or laughter, the latter of which I have been guilty of for years. When I dutifully reported these various maladies to my doctors, they usually provided a doctor like answer that made perfect sense and a prescription or over the counter preparation that solved the issue. There were a number of other afflictions which arose that no one could figure out. Because you have nothing better to do right now, I’ll tell you what they are.

The first affliction to rear its ugly head was stinging eyes. This bundle of excrutiating joy arose about a year or less after I was diagnosed. It would present itself every morning as a greeting to the new day, and at its whim anytime thereafter. I consulted two ALS doctors and neither of them could figure it out. One recommended eye drops which helped. About six months after the problem started it gradually went away. Thank Godess! I’m speculating it was a temporary reaction to AMX0035 but what do I know.

The next was a loss of epic proportions from which I will be unable to recover. I am speaking, of course, of my premature distaste for wine. To say I was a fan of the fermented grape would be about right. Friends and colleagues would avoid any mention of the elixir around me lest I bore them to catatonic stupor. There were and are wonderful exceptions and with these compatriots there were tastings aplenty. I especially loved the smaller local producers that dot the mountains and flats around the southern Bay Area so much so that St. Laurel has suggested I blog about my favorites. See, I’m starting to bore you already.

OK, back to ALS Land. About six months before I lost the ability to use a straw, I would get extremely bitter tastes in my mid palate when drinking whites, and off flavors from reds. Taste of other foods and beverages, as well as sense of smell, were unaffected. Doctor couldn’t figure it out. We speculated that it was the alcohol although beer didn’t cause a problem. Didn’t test the hypothesis with single malt scotch. I wish that whatever it was it would have waited for six months so I could have put a more serious dent in the wine closet. St. Laurel, your work is never done.

The last one I’ll bore you with is getting cold when I am on my respirator. Everyone shakes their head at this one. The only thing I can figure is that the respirator reduces the effort to breathe and so I am producing less heat. Not sure if I mind this particular malfunction, however, because the outside temperature is now 105 and I’ll take all the help I can get.

Even with the finest medical minds this wretched disease continues to confound. Maybe that’s part of the reason why ALS is referred to as a heterogeneous disease. In the meantime I’ll hope that any new symptoms that will invariably arise will be like a bean burrito: easily eliminated.

See you next time.