The Joker Card: Parkinson’s at 40

Let’s cut to the chase for this one, without our usual banter. This week the neurologist confirmed that my recently diagnosed dystonia is a symptom of what we hope is young-onset Parkinson’s disease (YOPD). I say “hope” because there are a few exceedingly unattractive alternatives that are initially difficult to distinguish from Parkinson’s. All are clinical diagnoses, not things she can easily test for, and while those rare conditions are likelier to strike people 60 and older, some can emerge in one’s forties. You can read more about YOPD here.

My wife, Crankenstein, accompanied me to the appointment because she knew what was coming and wanted to talk with my movement disorder specialist (MDS). She shared observations about my muscle rigidity and bradykinesia, sleeplessness, diminished sense of smell and increasingly inexpressive face, which the doctor also noticed. We cataloged the positive changes that I experienced on carbidopa/levodopa, a Parkinson’s medication. Mostly I sat there trying to fend off trepidation after my physical exam left Crankenstein ashen.

You know the screaming, crying girls who used to faint after glimpsing Elvis or the Beatles in the flesh? That’s how Crankenstein was — on the inside, anyway — in medical school, when she was invited by a neurosurgeon to touch a living (i.e., pulsating) brain mid-surgery. She also trained in movement disorder clinics herself during particular rotations, but with patients whose problems were worlds removed from Parkinson’s.

She explained to my MDS that I’ve shown some signs of Parkinsonism for as long as we’ve known each other. Since she frequently encounters some degree of Parkinsonism in patients with autism and knows that I have high-functioning autism (which I’m loath to discuss and find particularly embarrassing to write about now that social media has falsely convinced nearly everyone they’re autistic), she previously attributed some of my symptoms to that. But things changed and worsened in the last two years, leading to many tests and appointments that went nowhere. My fortunes only changed after I was sent to a neurologist who referred me to an MDS.

The MDS nodded and they had a clinical side conversation about autism and Parkinsonism before getting back to business. The medical student trailing my doctor sat quietly in the background, probably watching my face as Crankenstein asked “So, we’re calling this…?” and the doctor replied “Parkinson’s. For now. We’ll see how she continues responding to medication.” My levodopa was increased and another bedtime medication was added, an extended release version of levodopa, to see if it helps with excessive overnight leg movement.

I kept thinking how strange it is that this long-simmering diagnosis was discovered almost by accident, during a lengthy period of confusion over underarm swelling and a couple of hard knots in my underarm and upper chest.¹ It’s a little amusing, I suppose, that I’m apparently so diseased I wander around with spare illnesses falling from my pockets like loose change. But my other health issues are related to Crohn’s, so this seemed new and baffling — until my GI said emerging research suggests a link between Parkinson’s and intestinal inflammation. (There’s also an association between autism and pediatric IBD.)

Generally I try to take my medical challenges in stride, something I’ve written about here when discussing the illness I’ve had since early childhood. But this is a blow that really stings because knowing what was happening in 2013, when my earliest symptoms of Parkinson’s first appeared, might’ve changed the trajectory of my life and the lives of a few people I love dearly. It’ll take time, and a bit more choking on pointless anger, to make peace with that. Right now it’s more important to focus on practical matters like supporting Crankenstein, who is understandably stunned. We need to relax and iron out some plans for the future.

Over the past three months I’ve sometimes thought of this period of diagnostic suspense as waiting for the guillotine to drop. That’s what I was going to call the inevitable post in which I said “Well, it’s f*cking Parkinson’s.” My wife’s therapist changed my mind. She knows all about my health travails, including the time Crankenstein dragged me to the hospital to prevent me from needlessly dying while I complained like a putz. When Crankenstein told her that she was pretty sure I have Parkinson’s, her therapist replied, “She sure pulled the Joker.” I liked that way of looking at it, a framing that emphasizes the crapshoot nature of health.

That’s all I’ve got for you today. Within the next week, as the French Open concludes, I’ll resume a regular movie reviewing schedule. Thanks to all who contacted me in one form or another to offer their support during this saga, including reader Lisa, who always gives me a lot to laugh about. 

1. I’m updating this in 2025 to note that a physical therapist who specializes in shoulder issues now confidently asserts those knots, which are still there today, are the result of muscle shortening caused by Parkinson’s-related dystonia. ↩︎

Cranky Lesbian

Cranky Lesbian is a disgruntled homosexual with too much time on her hands. Click for film reviews or to follow on Instagram.

crankylesbian.com