“Do you put your dogs in Halloween costumes?” I asked the physical therapist today as she cut and stretched pieces of tape for my foot. We weren’t discussing our dogs, or even Halloween for that matter, but I had a feeling it was a fertile subject that might successfully redirect our small talk from questions of how I’m doing.
Her scissors stopped moving as she laughed and replied “They’ve been hot dogs and UPS drivers, but the best was the year they were sumo wrestlers. Every step they took looked hilarious.”
We’d spent the first 15 minutes of the appointment strategizing about my recalcitrant left limbs: a weak and shaky arm with a limited range of motion, and lower leg muscles that are often so rigid I can barely lift my foot. She was unsurprised that the ankle brace she’d offered for a multi-week trial was a partial bust; it’s useless during bouts of dystonia but otherwise prods me to lift my foot higher.
Applying kinesiology tape — the brand she recommends is called Kinesio Tex Gold — to parts of my foot and lower leg was what she called a sensory trick; she said it might make me more aware of my foot, which might ‘drop’ less as a result.* She showed me how to cut the strips and where to put them, explained why she chose those spots, then cut additional pieces I could take home for future use. You can wear the tape for up to two, maybe even three days in a pinch, and don’t have to remove it to shower. (“Pat it dry with a towel,” the PT cautioned. “No rubbing.”)
We’re trying this despite her low expectations because the next step is an evaluation for a custom brace that keeps my foot from curling inward. It’s an expensive and time-consuming process and only some dystonia patients are judged good candidates for bracing. My health insurance company also has a five-year rule about replacements that makes me nervous; the future seems too unsettled right now to lock ourselves into that.**
Once my sock and shoe were back on, the PT and I walked some laps around the gym and talked about weddings and babies and trash TV. She’d just returned from her honeymoon and lowered her voice in embarrassment as she copped to binge-watching Bravo’s Below Deck on the long flights to and from their exotic destination. “It was total trash and I loved it,” she enthused, adding that it’s also perfect treadmill viewing, and then it was on to motherhood and her pervasive anxiety about the fragility of babies.
As she questioned whether she could handle the stress of caring for an infant, I privately thought of how my left arm’s too weak to safely or comfortably hold a baby or toddler for more than a moment or two. I also thought of Best Friend’s mother, whose son was more vulnerable in his forties than he’d been immediately after his fraught delivery. Mostly I thought of Joe himself and the many conversations we’d had about reproduction, and a poignant confession he’d made about fatherhood near the end of his life.
I didn’t tell the PT to get pregnant now, while she and her husband are young and healthy; she probably hears enough of that from her family. But it’s what I wanted to say as I assured her that all the fears she’d just expressed, particularly that of SIDS, are normal, and that new parental worries will always pop up to replace the old ones in an interminable game of Whac-A-Mole. We kept walking and talking for so long that we never got around to arm exercises. In a few weeks I’ll return for what’s hopefully my last session of the year; maybe she’ll have some family Thanksgiving drama we can work through while lifting weights.
* There are different sensory tricks for different kinds of dystonia; the MDS has taught me a few. Sadly, she’s never played “The Final Countdown” during a demonstration, though she’s the likeliest of all my doctors to be an Arrested Development fan.
** If my condition worsens, we could be stuck with something ineffective; if it improves, a brace might be unnecessary. “How would a neurodegenerative condition improve?” some might scoff, but currently I only take levodopa. There are other medications the MDS can add to the mix, like amantadine for rigidity. So far all three of us — me, the doctor, Crankenstein — have preferred a conservative approach because of my age and because most PD treatments have potentially unpleasant side effects. (Some people have no trouble with dopamine agonists, to name a common class of PD meds. Others do crazy things like drain their retirement accounts to cheat on their spouses with prostitutes, ruining marriages and repeatedly contracting STDs. The stories you hear about dopamine agonists in PD support groups are sobering. I would probably only try agonists as a last resort.)