First of all, TV movie fans, I’ve planned something special for Mother’s Day, so stay tuned for that. But this post is about a sleep experiment recently conducted to better answer my neurologist’s question about overnight behaviors. An ex complained quite a bit about my sleep but my deep-sleeper wife never has, so I needed a way to watch it myself.

At my first appointment with an MDS, a neurologist specializing in movement disorders, I expected to be told that I’d been referred to her clinic in error—that the problems I was having with my left arm had a rheumatological or orthopedic cause, and that I was wasting her time. Instead she observed various types of dystonia and noted an array of motor symptoms that could point to a larger problem.

Stunned after failing several parts of a neurological exam, I became an unreliable narrator as she asked countless questions about everything from hand cramps to sleep. A problem with having other conditions (in my case, Crohn’s with a few complications) is that symptoms can become as jumbled as electrical cords behind a desk. I’d spent so many years attributing hand and foot pain to arthritis that it never occurred to me how odd it was that those issues continued long after immunosuppressants calmed the pain in larger joints.

At home later, I was frustrated. There were things I’d told the first neurologist, the one who sent me to the MDS, that I forgot to mention at the second appointment, like details about recent falls. And there were answers I’d given that were at odds with my wife Crankenstein’s observations: “You can’t smell for sh*t,” she laughed incredulously when I told her I had assured the doctor my sense of smell was fine. 

“Is your jaw tight?” I’d been asked, and I said no, even though my dentist struggles to pry my mouth open and I clench my jaw with such ferocity that I’ve twice cracked a molar. Another ignominious example of my distraction: I distinctly recall telling the MDS that I was fine with buttons and zippers. A morning or two later, I noticed my wife had missed a button on her shirt and went to fix it. We watched in confusion as my left hand resisted cooperation. A few days after that, I struggled to help her zip a dress. 

But sleep, sleep was where I really screwed up. The realization hit me a few weeks later, when I was in bed with Crankenstein. It is her nightly custom to fall asleep with her head on my chest. In recent nights she’d become a more aggressive cuddler than usual, encroaching on more of my torso and pulling me tightly against her. And I thought I knew why: If I went to bed within four hours of my last dose of levodopa, a medication the MDS prescribed, I didn’t seem to jerk and startle as zestfully as usual.

“Have you noticed my jerks are more subdued on levodopa?” I asked.

“Yes,” she sleep-slurred, and a moment or two later she was out like a light, leaving me to contemplate this in the dark, still beneath her.

The doctor had asked about my overnight movement and I’d mostly not known how to answer. “I’m not sure” or “I don’t think so,” were meekly offered in response to questions like whether my legs moved excessively overnight or whether I act out dreams. Crankenstein is an extraordinarily deep sleeper. A marching band could traipse through our room at 3 am playing the theme to Hawaii Five-0 and she’d be none the wiser. Now I thought back to a previous relationship with an insomniac and felt a creeping sense of dread.

A decade ago, my former partner lodged bitter complaints about my sleep—myoclonic jerks, waking up startled, annoying leg movements. To her, these new developments were irrefutable proof that I was stressed and unhappy in our relationship, an explanation that was absurd to me then and now. My best guess was that it had something to do with my arthritis, which was in an unmedicated flare. After that relationship ended, I didn’t give my sleep much thought; no one else ever complained about it. But it has turned increasingly tortured over the last three or four years, often leaving me miserable.

That some of my motor symptoms, especially muscle rigidity and slowness, have responded so well to levodopa points to either dopamine-responsive dystonia or young-onset Parkinson’s disease (YOPD). My heart sank when I remembered those sleep issues of 10 years ago for two reasons. First, all involved questions the MDS had asked. And secondly, there’s a “prodromal stage” of Parkinson’s in which non-motor symptoms, such as sleep disturbance, may appear about a decade before the disease announces itself more clearly.

The next day, I discussed it with Crankenstein, who said she would come to my next MDS appointment and offer her own observations. She reiterated that she had no idea what I was up to overnight but agreed it would be helpful to know if the leg movements from a decade ago were still a feature of my sleep. My DIY solution was to train a motion-activated camera from our home system on my side of the bed to see if it picked up anything. (If you try this yourself, make sure to disable notifications until the morning.) 

Reader, I did this on Thursday night and cannot tell you how many 15-second clips greeted me on Friday morning. In 2013, I was told that I bent my legs at the knee and they would slowly, obnoxiously slide back down the sheet. Then I’d drag ’em back up and do it again. In 2023, this was still the case, except I did it all night long. From 10 pm until 5 am, the camera caught dozens of instances of this. It happened anywhere from three to six times per hour during sleep so fitful my watch logged zero minutes of “deep” sleep.

In these clips a blanket covers my legs. What you see, essentially, is enormous blanket-tents form and collapse as my knees flex. Scrolling through the list of time-stamped clips with thumbnails showing my nocturnal Rockettes routine, Crankenstein said “No wonder you can’t sleep.” I had to laugh at the absurdity of it; it’s as cartoonish as the sex scene from Serial Mom. I’ll save the footage in case my doctor wants to see it. She can probably prescribe something to help with the problem once I see her in June, and I’ll provide an update then.

Mini update: Rather than needlessly sentence myself to another month of sleep deprivation, I emailed a couple of sleep clips to the doctor’s office. The MDS reviewed them and said it was PLMS, as Crankenstein had already told me. This rankled me a bit, even though it was obvious: PLMS can occur on its own but is also strongly associated with dopamine-related conditions, including Parkinson’s. Then I was sent for blood work and told the office would contact me afterward with what to do next, so I’m waiting for that.

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