I have ALS

 My family, workmates, and board-gaming associates all know I have ALS (more specifically bulbar-onset ALS), so it is about time I announced it on here.  There are a couple of people who have asked about my status (and more who probably want to know), so I'll use this blog as a way of checking in every month or so.

I remember the evening of my first symptom.  It was just shy of a year ago, on 2022-NOV-16, a fine Wednesday evening.  I was teaching a calculus class, and tripped over the word "statistics", for what I thought was no particular reason at the time.  By Christmas, even though I was still fully intelligible, it was obvious something was going on.  As ALS usually goes, I have gotten progressively worse over the year.

If you ask how I’m doing emotionally, that changes day-to-day.  I flit between four of the five stages of grief (denial, anger, depression, and acceptance; somehow, I never seem to be bargaining), sometimes going through multiple in a single day, sometimes fixated on one for a single event.  My father’s only remaining sibling recently died, and I could not summon words of compassion or condolence for him, because every time I tried, I would get depressed about my own mortality.  My wife and children are firmly convinced I’m going to beat the odds and live into my 70s, and when I’m with them I believe it too.  I have always kept my anger on a leash, but lately I need to express more (through dark humor or sometimes just punching something).  Then, I have days where life is pleasant and death is seen as an inevitable, but comfortable state.

Physically, my tongue, lips, and cheeks are all slowly responding less to my will.  I have two neurologists (one at an Illinois hospital and one where I work).  The Illinois neurologist has given me plenty of encouragement, but I think he thinks I’m more disabled than I am.  The last visit he was talking about taking small bites when I eat, which I am not ready to do yet.  It is partly pride, partly the satisfaction that I have always felt with taking large bites, and partly to stop from biting my cheeks (the left or the right, often neither, never both).  He is worried about my choking, but I’ve never choked on food yet.  I have choked twice on a soft-gel pill that got caught in my epiglottis, but was able to expel them.  No more soft-gels for me!  I’ve also choked on my own mucus a couple of times (another thing to thank my allergies for).  But, while I sometimes cough from my food (small, loose pieces like vegetables are especially troublesome), bite my cheek horrendously trying to chew it, and struggle to position it in between my teeth, I don’t choke.

As for the rest of me, I feel a strangeness in my arms, especially the triceps.  I am clumsier that I was, but I don’t think I have lost more strength than is normal for a man of 61.  I have fallen once (I tripped over an ottoman on Oct. 14, a fall I would not have taken a year earlier).  I cry rivers at the slightest sentimental thing, even when I’ve seen the show times before and know what’s coming (never at just random stuff, but I didn’t cry at the show the first four times I saw it; the doctors say random crying/laughing is another symptom, but this seems an edge case).  I rarely stop salivating.  

On the other hand, I still can cook, drive, address my own hygiene, lift things if I take my time and get good balance, chew through any food that gets between my teeth, etc.  After almost a year, I think I’m behind the usual progression, which is a good thing.

I’m on two medications, and relatively old, generic one called riluzole, and brand-new Relyvrio.  The first is covered by my insurance and, on the mean, increases life expectancy by about a month.  The second is not covered by my insurance and costs a few hundred every week, and increases life expectancy six whole months.  Fortunately, the drug company has enrolled me in a program where I get it free.

I have an appointment later this month where I should get the results of my genetic testing.  I don’t want to have to tell my brothers or sons that they might suffer this too, but I think it’s better to know.  I’m seeing more doctors and other specialists, taking more tests, etc., than I know what to do with.

Well, that's enough for this post. I’ll try to keep this updated every month or so.