8/27 update: Twirl review coming by Tuesday at the latest; got waylaid by continued shoulder problems. Thanks for your patience!
TV movie fans: I’ll be back soon with a look at “Twirl,” a very special exploration of the ultra-competitive world of baton-twirling starring Lisa Whelchel and Erin Moran.
“How has your mood been lately?” the neurologist asked last week at my first follow-up appointment since being diagnosed with early-onset Parkinson’s in June. I was there for the neck and shoulder Botox injections that were previously delayed by levodopa adjustments, but she set aside extra time to discuss the diagnosis itself since our last meeting had been rushed.
“I’m told there’s room for improvement,” I replied modestly.
“Are you depressed?”
“I’m not sure if I’m depressed-depressed. But it’s depressing to be told at 40 that you have Parkinson’s.”
There were things I might’ve added but kept to myself, like how unprepared I was for all the crying people did about my diagnosis, as if it were the end of the world and not just another inconvenience. Or how jarring it was to receive a thick welcome package in the mail from my local chapter of the APDA, something my doctor’s clinic arranges for the newly diagnosed so the organization can connect us with education, support and other resources as we begin our exciting new lives as rigid, shaky, expressionless burdens. (In case it wasn’t clear, ‘burdens’ was a joke.)
The idea behind the welcome packets is a smart one, but its execution left something to be desired. Early-onset patients are sent the same literature as octogenarians and their caregivers, even though our circumstances are disparate. As I thumbed through photos of grandparents and information about excessive drooling and where to find nursing home recommendations, I thought of how different my own concerns — (newish) marriage, work, financial planning and prospective parenthood — are from those of patients who’ve already raised families and retired.
Back in the cramped exam room, my doctor gave me a pep talk about antidepressants, which she recommends to most YOPD patients, and I agreed to give it some thought. Psychotropic drugs have improved and in some cases even saved the lives of people I love, and I have no moral or medical objections to them, but I’m currently taking more than 20 pills per day and am not eager to add more to the mix.
My wife was absent from the appointment — a scheduling snafu meant she was seeing patients of her own — but she armed me with a list of questions, including one I was almost embarrassed to ask. Over the past few weeks, we noticed my “exaggerated auditory startle response,” normally most prominent before bed and overnight, is starting to creep into daytime activities and sometimes happens in public. This is common with PD, unfortunately, and something we’ll have to learn to live with, unless I want to try yet another medication. (At least I only jerk; some people scream.)
We strategized about my sleeplessness and levodopa-induced fatigue. The doctor graded my tremor and slowness “not as bad as last time” and asked if I’ve recently engaged in reckless behavior, like compulsive spending or disrobing in public. Then it was time to prepare for the injections, and she asked me to put up my hair and accurately rate my pain. “You downplay it,” she said correctly after staring at my frozen neck and poking its rigid muscles. And then something happened that’s much funnier to me now than it was in the moment — about halfway through the series of injections, she accidentally hit a nerve.
The pain was immediate and blinding. I wanted to shake my arm, stretch it, do something to reduce the discomfort, but it was temporarily immobile. “There shouldn’t have been a nerve there,” the doctor said as she apologized. She asked if I wanted to curse, which reminded me of one of my pediatric GIs, a very conservative and devoutly religious man who always gave me permission before invasive exams to yell profanities without repercussions. “Right, mom?” he would ask my mother, who of course agreed. I never took them up on it, nor did I indulge in front of the movement disorder specialist, though I took a moment to breathe deeply and allow a wave of nausea to pass.
As I sat back down so she could finish the injections — she said the nerve pain would quickly subside and it was gone in less than an hour — I smiled ruefully and explained “I’ve had a rule since I was a kid: Don’t say ‘ow’ in front of a doctor.” When I relayed that to a friend later, she asked if I was going to revise my stupid policy and be more candid in the future. “Suffering is part of the human condition,” I countered, before admitting I may have watched too many Ingmar Bergman films at an impressionable age.
Crankenstein was similarly annoyed and told me with a sigh, seemingly on behalf of all physicians, “That’s dumb. We’re here to help you. We want to help you.” Time will tell whether I’m capable of fully embracing that philosophy.
Cranky Lesbian is a disgruntled homosexual with too much time on her hands. Click for film reviews or to follow on Instagram.
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