Coping With a Surprise Case of Brain Disease - Pacific Standard

Coping With a Surprise Case of Brain Disease

Jesse Cheng is an otherwise healthy guy in his mid-30s who knew something was wrong the minute he punched his wife, who could very well prove to be the most valuable in a group of strategies used to come to terms with this unusual act of violence.
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(Photo: Oliver Sved/Shutterstock)

(Photo: Oliver Sved/Shutterstock)

When I told my doctor I'd punched my wife while acting out a dream, he was concerned. My body's inability to “paralyze” itself during sleep—a neurological condition known as REM sleep disorder—has been identified by ongoing research as a possible precursor to Parkinson’s disease. In my dream I'd been swinging my fists to fend off an assailant. Now, I wanted to be the one on the offensive, attacking the problem of how to cope with uncertainty.

REM sleep disorder itself is relatively benign, as brain diseases go; a dose of clonazepam would put my nighttime theatrics to rest. But as an otherwise healthy guy in his mid-30s, I'm young to be showing symptoms of RSD—these typically manifest after age 50—or any prodromal signs, generally, of Parkinson’s. So it was with considerable interest that I came upon an overview of the scientific research on “Coping in Neurological Disorders,” published this year by psychologists Amanda Rabinowitz of the University of Pennsylvania’s Department of Neurosurgery, and Peter Arnett of Pennsylvania State University.

According to the literature, the coping process for chronic neurological conditions can be understood in three stages. The first, appraisal of the stressor, pertains to the patient’s subjective perception of her situation. After a neurologist confirmed my RSD diagnosis and its implications, my own immediate instinct was to map out the terrain of available data. What was truly unknown? What could be made known?

I hadn’t considered whether the disease’s possible effects on my most cherished relationships would require that life-defining goals and values be reconsidered, reprioritized, replaced.

In the face of ambiguous circumstances and imagined what-ifs, I sought to establish structure and real-world tasks through an information-gathering project. The research suggests that here, my coping framework was a decent one: Situations appraised as concrete challenges cause less distress than those viewed in terms of threat or uncertainty.

It helped that my neurologist was ready and willing to use the diagnostic technology medical science has in its toolkit. First, he signed off on an MRI to uncover potential abnormalities in the brain’s physiology; then a polysomnogram to monitor dream activity, particularly during the REM cycle; and finally, a DaTscan, a cutting-edge imaging procedure, approved by the U.S. Food and Drug Administration in 2011, that would detect dopamine shortages in the brain and thereby help to confirm (though not conclusively) whether Parkinson’s had already taken hold. Furthermore, the doctor promised he’d go to bat for me with insurance to get these procedures paid for.

If my plan was to ease fears through the orderly collection of data, I saw that my neurologist’s support would make my coping approach that much more practicable. This thought process comprised the second stage of my coping process: the evaluation of available stress-reducing strategies.

The third and final stage involves the selection and actual implementation of strategies. My quest for knowledge had already roved far and wide. In fact, Rabinowitz and Arnett’s research review was just the next text scoured in a line of fact-rich materials that included pharmacological assessments published by the FDA, summaries of NIH-sponsored clinical trials, Michael J. Fox Foundation press releases, technical reports from the Parkinson's Progression Markers Initiative funded by the M.J.F. Foundation, op-eds touting the merits of that study’s open source data-sharing—and my own notes to keep straight all the acronyms I continued to forget: SNCA proteins, COMT enzymes, MAO inhibitors, L-DOPA medication, PNF techniques (for rehabilitative stretching), DBS (deep brain stimulation, a type of surgical treatment), and HRS (hypokinetic rigid syndrome, another name for Parkinson’s), among many others.

The coping strategy I’d chosen was what the research would call “active” or “problem-focused,” where the goal was to target and neutralize the source of stress (for me, the unknown). “Emotional-focused” strategies, by contrast, seek to regulate the negative emotions that accompany stress—for example, through cathartic release, meditation, or anger management. As the classic studies in the field tell it, the problem-focused type is traditionally associated with better psychosocial results.

I was starting to feel like a coping champion. Then I proceeded to read Rabinowitz and Arnett’s discussion of more current studies that explore various kinds of emotional-focused strategies. Although I’d put tremendous energy into filling out my terrain map of the informational universe, this, and only this, was all I’d been doing to deal with the specter of Parkinson’s. I hadn’t confronted what I felt about my situation. I hadn’t asked how I expected the experience of uncertainty was affecting my loved ones. I hadn’t considered whether the disease’s possible effects on my most cherished relationships would require that life-defining goals and values be reconsidered, reprioritized, replaced. In short, my emotional-focused strategy thus far had been what the research would call “avoidant.” And I realized I was internalizing a great deal of anxiety knowing I’d been leaving the people I care about in psychological limbo.

Emotional-focused strategies can be helpful and even necessary, as long as they are of the “active” sort. And so, as the MRI machine drew me head first into the gleaming white cylinder of the magnetic chamber, it was with deliberate intent that I placed these big questions in my mind, front and center. The voice over the microphone coaxed me to remain as still as possible. Thinking of the tremors that might one day animate my body against my will, I lifted my right hand—the same one that had punched my wife as I slept—and blew her a kiss. Did she see it? I didn’t know. And then, just as the machine’s gentle whirring abruptly ceased, as if this contraption that had just swallowed my body was now holding its breath, I felt her squeeze my foot.

On this point, the research leaves no doubt. Personal support is the most well-studied coping resource in the literature. It is strongly correlated with positive adjustment outcomes.