How are you doing? is a question I dislike, especially if it comes with sincere eye contact and emphasis on the word “doing”. It forces me to assess how I’m doing, and the conclusion is always (surprise), Still shitty. Sometimes people ask me directly, How is your condition? and then I can say that out loud. Otherwise I don’t reflect on how I’m doing. I keep my head in the present for the most part, attending to whatever needs to be done right now. This is better for my mental state, but I can understand that people would like to know. They are concerned, and probably curious about what ALS is like beyond “shitty”. So here goes.
For about seven years I’ve had muscle twitches. They started in my right arm and abdomen. It felt like my internal organs were twitching. These are not like when your eyelid twitches; they don’t stay in one spot. They are more like tiny electrical storms that jump around all over the place. They have since spread out over my whole body, and they are constant. Seven years of constant twitching. You know how irritating an eyelid twitch is, so you can imagine what non-stop all-over body twitching is like.
Actually though, it is so pervasive and constant that I don’t notice it much these days. I mainly notice when it decides to get thematic. The twitches will concentrate in one area for a period of time. I’ll have whole hand twitches, or whole shoulder twitches, or just the fourth toe on my left foot will spasm every few seconds for a couple of hours or days. Here is my favorite so far: nostril twitching. The tiny muscles that let you flare your nostrils will freak out, but just on one side. The first time this happened it lasted for 12 days. In the middle of this one day I was riding around with my good friend Aaron and he said, Man my eyelid won’t stop twitching today. I should have kept my mouth shut, but I told him about my non-stop nostril twitch. It’s tough being my friend. You can’t complain around me.
Muscle spasticity and cramping
It’s extremely demoralizing when your muscles stop working except to fuck with you. That’s basically what muscle spasticity is. In fact, this nicely sums up ALS in general. The spasticity started early on, soon after the twitching. I’d wake up in the morning, move my leg slightly, and then the whole thing would just shoot out, rigid as a pole and stay that way for several seconds. When I would get up, instead of walking to the bathroom it would be more like rocking back and forth on stilts. Going down stairs sometimes a leg would go rigid and almost pitch me forward. Not good. One day I was standing on the side step of our new house and I sneezed. Instead of taking a step to correct my balance, my legs went rigid and I toppled like a redwood onto the sidewalk, stopping myself with my head against the fence. This happened more than once, and it totally changed my attitude towards becoming wheelchair-bound. When it was time, I welcomed it.
A recent development has been spasticity in my jaw muscles. During meals or when I am sleeping my jaw will clamp shut like a snapping turtle. Often my tongue or cheek doesn’t get out of the way in time (those muscles are going downhill too), and I get a mouthful of blood along with the excruciating pain.
The other fun thing that goes along with spasticity is cramping. Pretty much every morning I get a massive cramp in my calf muscle, or my quads, or my hamstring, or all three. These are triggered by the robo-leg I mentioned above, which as I said can be triggered by just a slight movement. Ever had your foot spontaneously turn into a fist? Foot cramps. Sneezing is safer now that I’m in a chair full-time, but now they trigger crippling abdominal cramps. I get cramps in my hands, in my neck, even in my body cavity if I turn a certain way while taking a deep breath. Cramps fucking suck.
They say that one of the perks of ALS is that it doesn’t mess with your sex life; it leaves your junk alone. But that’s not entirely true. Because of muscle spasticity in the groin, my staying power went from a respectable two minutes to a manhood-withering .02 seconds. So much for sex – one of my top three “quality of life” contenders.
I take three different drugs plus magnesium supplements to mitigate the spasticity and cramps. They don’t eliminate them, but they help. But like everything that helps me, they also have a downside.
Drowsiness from the muscle relaxants, intestinal volcanics from the magnesium, and stupidity from the Clonazepam. That’s an anti-anxiety drug that my doctor prescribed for the tongue biting. It works great for that, and also helps me get a consistently good night’s sleep, but leaves me feeling dumb as a stump a lot of the time. I’ve spent the last two years tweaking the dosages to minimize the downsides, but I’m realizing it may be impossible to get it just right. In fact, everything that assists also has a price.
My neck brace alleviates neck cramps, but it also makes me overheat and I can’t look around.
My dictation software is amazing and I would not be able to type at all without it. However, it freezes up my computer, types & instead of N when I spell words with it, and worst of all, will not transcribe profanity – which is essential with a condition like ALS. Bucking piece of ship software.
My wheelchair is state-of-the-art, and without it I would literally be just an immobile pile of complaining flesh. But since I’m sitting all the time I have poor circulation in my legs, ice cold feet, and wicked constipation. Magnesium helps with that, but as I said above… Volcanics.
My caregiver is a sweet, compassionate woman who is here whenever Atsuko is not, to take care of my myriad needs, and without her I could not live.
She also drives me fucking insane. She is a dotty old gal who narrates her actions to herself, hums the same three notes incessantly, finishes my sentences, can’t remember simple instructions from one moment to the next but needs constant affirmations that she is doing a great job, and has 3 to 5 throw-away comments about absolutely anything I say: (me) The blueberries are in the fridge. (she) Okie-dokie. All righty. Just gonna get those blueberries for you. You sure must like them. Just wanna make sure you get those blueberries.
You can imagine how entertaining this is for a few hours in the morning and a few hours in the afternoon, every single god damned day. Still, it’s good to have somebody to take care of all the little shit. Because those times when no one is around…
Ever had a hair on your tongue? Hard to get those off, isn’t it? It’s pretty annoying. But at least you have working fingers.
Try this fun challenge: Go one whole day without touching your nose. If you have a big, hairy schnoz like me I bet you lose your marbles by lunchtime. My nose is a source of constant agitation which I can often do nothing to relieve.
Got an itch on my cheek/neck/shoulder/balls. Damn… Just going to lie here and feel it, then.
Rats, I sneezed and now there’s spit all over my chin. Ho-hum. Guess it will dry.
That picture is crooked. My screwdriver didn’t get put back in the toolbox. My straw is pointing the wrong way. I can’t fix these things, no matter how hard I stare at them. I’m like a cat staring out the window at a bird. Insanity.
The muscles in my neck, throat, soft palate, lips and tongue are getting weaker. I suck at whistling now. My B’s and P’s and D’s don’t connect right and I have that nasally voice now like a deaf guy. Each sentence of this dictation takes me forever. Because my tongue is turning into a slug and my swallow muscles are going south, I’m always choking on things, especially liquids. I can’t fall asleep on my back because I gag on my saliva. I have to sleep on my left side with a towel under my face. The towel gets soaked with drool and I wake up several times in the night with my face in a cold pool of it. My left shoulder is permanently higher than my right shoulder from sleeping on it every night.
I have roughly two hours a day, four days a week to get anything done. When Atsuko is at work and Nisi goes to daycare I wake up at 7:30. It takes me 2 ½ hours to get ready, with the help of a caregiver. After that I get my two hours of work done, mostly on my computer and the telephone, then I start to get out of breath. Talking to my computer gets hard, so I go have lunch.
After lunch I’m feeling even more sluggish so I don’t get much done besides reading the news, watching YouTube (brewing videos and videos of computer games I can’t play). Sometimes friends will come around to hang out. By 3:30 I’m totally out of energy and I have to lay down till 6 PM. Atsuko and Nisi get home shortly after that and the rest of the evening I spend with them in low energy mode. This is my schedule every day.
Because of this afternoon nap there are a lot of things we miss out on, on the weekends and Wednesdays when Atsuko is off. Nisi’s friends’ birthday parties are the main thing we often miss because of me. If we go out for any reason, we have to be back for my nap. Then, while I’m laying down, the girls either have to go out or be quiet as a mouse so I get my sleep. If I don’t get my sleep, I’m a zombie grouch the rest of the evening.
Even when everything goes according to plan though, and I lie down on time, dog tired, I just don’t fall asleep. The girls are in the other room being quiet as a mouse, and I’m laying in bed not really asleep and not really awake, getting more and more uncomfortable but unable to toss and turn like a normal person, and I have to just stick it out until it’s time to get up. If I get up early without at least resting my weakened neck for that time, my condition will be even worse. This is a huge bummer for everyone.
Everything becomes hysterically funny the moment I take a bite of food, a drink of water, or start to take my medication, or walk with my walker from my chair to the toilet – anything requiring concentration, in other words, to avoid seriously messing myself up. A random thought will pop into my head, or someone will make an innocuous comment, and it will send me into maniacal spasms of uncontrollable laughter. It’s really not funny. If I manage to finish the maneuver without choking or falling down everything goes back to normal.
I imagine this is some kind of stress-induced psychological mutation. You might call it a death wish, I guess. Seems logical, given all the fucked up shit ALS gives me to deal with every day. Maybe my subconscious is trying to hurry things along. I don’t know though. I’m not consciously trying to get it over with. Maybe I should be. Things are only going to get worse, after all.
OK, this post is nothing but complaining, I know. And these are just the main points. There is more stuff I haven’t even covered just because I sense you’ve reached that limit everyone has of listening to someone else’s problems. I know I have. Just reading back over this has put me in quite a funk. Depressing shit!
The point I want to make is that in spite of all this extremely frustrating, uncomfortable stuff, and even though most of it is happening simultaneously, most of the time, I’m dealing with it. I’m not thinking about it, reflecting on it, or bemoaning my situation. I might actually yell at the top of my lungs in aggravation over some thing that is not going right, like that itch I can’t scratch or that caregiver who can’t get a simple instruction through her thick head. But once the yell is done, it’s done. The situation is done and there is a new situation to deal with. Rinse and repeat.
So. That’s how I’m doing. Dealing with it. Not listing my problems and getting bummed out – at least until somebody asks me how I’m doing.