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. We hope because there are less attractive options, including multiple system atrophy and progressive supranuclear palsy. All are clinical diagnoses, not things she can order an easy test for, and they share many symptoms. If it’s MSA or PSP, it will become more apparent in time. For now, we’re calling it early Parkinson’s, since the other options usually afflict older patients. 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, reduced arm swing, diminished sense of smell and increasingly inexpressive face, which the doctor also noticed. We cataloged the positive changes that I experienced after treatment with Botox and levodopa. I mostly sat there and looked pretty when I wasn’t failing the usual movement exam.

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 in her (extensive) experience with autistic patients, she frequently encounters elements of Parkinsonism. Since she knows I have high-functioning autism, she previously attributed some of my symptoms to that. But my condition has changed and worsened in the last two years, leading to many tests and appointments that went nowhere. My fortunes only changed once I was referred to a neuromuscular neurologist, who then sent me to an MDS.

The MDS nodded eagerly and they had a side conversation about autism and Parkinsonism before getting back to business. A medical student who was 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 determine if it helps with my excessive overnight leg movements.

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 mysterious chest node. (Those issues persist and are probably unrelated to Parkinson’s. My rheumatologist has offered a short respite from testing because my blood work looks fine.) 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 most of my other health issues are related to IBD, so this seemed new — until my GI said emerging research suggests a link between Parkinson’s and intestinal inflammation.

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. If I’d known what was happening in 2013, when my earliest symptoms of Parkinson’s first appeared, my life might’ve turned out differently, even if only slightly, in ways that would’ve meant the world to me. In time, I’ll make peace with it. Right now I’m trying not to choke on pointless anger. It’s a waste of energy and the important thing currently is supporting Crankenstein, who is understandably quite upset. 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 review schedule. Thanks to all who contacted me in one form or another to offer their support during this saga, especially reader Lisa, who always gives me a lot to laugh about. 

Cranky Lesbian

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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