I’m Learning to Embrace My High-speed ALS Reflexes
Columnist Dagmar Munn shares tips for managing muscle spasticity
Shortly after I was diagnosed with ALS, I began to notice my reflexes acting kind of wonky. Pre-ALS, thanks to years of practicing yoga and tai chi, I considered myself a relatively calm and relaxed person. But now, any sudden loud noise or unexpected tap on my shoulder had me jumping out of my chair. My doctor explained the cause was an ALS symptom known as muscle spasticity. “What does that mean?” I asked. And she gave me a short demonstration.
Using a small rubber hammer, she thumped along my shoulders, elbows, and wrists. All along the way, in response to each tap, my joints would bounce as if jerked by an invisible string. However, when she got to my knees, she knowingly stood clear and well to the side, because with that single tap, my leg performed a kick worthy of a field goal!
Later at home, my exaggerated reflexes began showing up at other times as well.
First, there are the monster sneezes. No dainty ah-choo here. Mine has the velocity of a jet engine. My first major sneeze happened while I was walking across the room pushing my rollator. The sneeze came on so quickly and so powerfully that I suddenly found myself kneeling on the floor. Luckily, my husband was nearby to help pull me back up.
Then I discovered that loud explosions in action movies also activated my exaggerated reflexes. More than once I’ve had to suspend my favorite pastime of knitting while watching TV because of all the stitches that fell off my needles during my supersized body flinch.
Most people find that the cool air wafting from the refrigerated food section in the grocery store feels refreshing. For me, it’s as if I’ve been transported to the North Pole. When the cold air hits my face, my jaw and neck muscles tighten, instigating a domino effect of tense muscles down through the rest of my body. The same thing happens to me at restaurants. It seems no matter where I sit, I always end up under the cold air vent.
I’ve had it explained to me that spasticity is caused by a rogue message being sent to the muscles telling them to contract. The message is not from me, or my conscious commands, but a garbled command from my autonomic system. It’s especially apparent when an ALS patient has clonus, the rapid, repeating muscle contractions. It’s much like the bouncing knee of a seated but very nervous adolescent. In this case, the reflexes are caught in a continuous feedback loop that can only be relieved by a physical change in position.
Knowing my muscle spasticity is something I just have to learn to live with helps me avoid wasting time feeling angry, frustrated, or mad at my body.
Instead, I follow the strategy of embracing my quirky reflexes.
Knowing I’ll be out in cold weather or even wandering the grocery aisles, I dress in layers and bring a neck scarf. Sometimes I don’t need them, but when I do, I’m thankful I have them. Funnily enough, I’ve discovered that wearing a face mask helps keep my face and cheeks protected from the cool air, too.
As for those monster sneezes, at the first inkling of an oncoming sneeze, all I can do is grab something solid and hold on. A table, sink faucet, grab bar, anything, and keep holding until the mayhem has passed. Those of you who share this particular reaction will know exactly what I mean.
Let’s help each other learn to live well while living with ALS.
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