An ALS Diary (part one): On Being Overtaken by a Rare Incurable Disease

Within the interval of a year I went from a vigorous and strong 74-year-old to the stricken and failing sufferer of the rare disease of amyotrophic lateral sclerosis, ALS, also known as Lou Gehrig’s disease. My benchmarks were solo journeys I undertook, first in May, 2021, to rescue my son in Hawaii, then in August to Paris, where I was isolated by the French pandemic restrictions when not working with my research partner Didier, then back again in November-December to continue with my research project, and finally in April-May of 2022 to resume my collaboration (and find some excellent French friends, who are now represented in this blog). During the first three journeys, I was remarkably fit for my age. During the fourth trip, the onset was unmistakable. My lower legs began to get numb and I exhibited what’s called “foot drop”: my unresponsive toes curled downward so that it became very difficult to put my socks on. It’s harder than I could have imagined to guide my limp snagging feet through the leg holes of my underwear.

I mentioned my condition during that jaunt to Hawaii, because at the time, my son was the one who was suffering from a neuropathy that made walking as difficult for him, forty-five years younger, as it is for me now. It’s as if I had traded conditions with him. Between my stays in Montmartre, where I climbed the same stone stairs and sloping streets on each stay, my initial strength and slow decline were all the more noticeable. At first I consoled myself with a notion from the film Blade Runner: the candle that burns brighter only burns half as long. But it seems that I am basically a defective candle.

I console myself that my son is back to normal, and above all that the genetic test indicates that my susceptibility to ALS is not hereditary. My son’s neuropathy evidently resulted from diet. Mine has some other non-genetic cause which amounts to bad luck. It’s a mysterious disease. Its progression is like some stealthy creature in a sealed compartment, unknowable except by the indirect evidence of my gradual loss of feeling and diminished control over my limbs. The progress of ALS in my case is not painful. There are spreading fasciculations, the spasms and twitches that signal the failure of my motor nerves. It’s like the cold, numb sensation of a leg or arm that has “gone to sleep.” My feet feel as if I had stood too long in deep snow. The upward spread can be resisted with physical exercise, by working out, swimming, physical therapy, and balance practice; but resistance never recaptures lost ground or holds any ground permanently. You can resist but the other side wins. Sometimes I think that resistance only tightens the grip of ALS on my failing body. But I think resisting is preferable to acquiescing. If nothing else, it preserves your human dignity. To maintain my strength, I go regularly to the YMCA. I walk the track, use the exercise machines, stretch my hamstrings, and press weight with my legs. I swim laps in the pool. In the water, I can almost feel as if my body were unimpaired. After the lap swim, I walk against the current in the therapeutic pool. I sit on a submerged ledge and admire the restored color of my otherwise purplish toes. Finally, I bask in the sauna, absorbing the warmth that envelops my whole body. After these workouts, I sleep especially soundly. I never have nightmares. Fortitude and nonchalance are two words for the same mental disposition in my case.

That’s of course much easier to say when you’re 76 and not twenty years younger and in the prime of your life. Nevertheless, I imagine that my attitude could be recommended to anyone in the clutch of this inexorable and invisible disease. Despair could only make things worse. At least it entails very little acute pain.

(To be continued).

Signed,

Andrew (Weeks)