My first bedroom was at the end of a short hall that opened into the living room. Once I’d graduated from a crib to what my mom called a ‘big girl bed’ — one-half of my dad’s boyhood bunk set from the 1960s, topped with a pink and purple comforter — I was afforded a scenic view of sparsely decorated walls and part of the couch. It was from this perch that I noticed unusual activity one night and went to investigate why the couch had been moved. What I found was Jane Fonda in spandex and leg warmers, encouraging my mom to lose weight.*
There were exercises and pre-exercises galore during Tuesday’s four-hour neuropsychological assessment, which reminded me of Fonda (whose original Workout is currently on Tubi, along with subsequent installments). I pictured my brain in purple workout gear, its fluffy ’80s hair perfectly coiffed, energetically lifting and holding as Fonda counted repetitions. The earliest, easiest tests weren’t too far away from that, but the closer we inched to the finish line the more I struggled like a Sweatin’ to the Oldies background participant on the cusp of a myocardial infarction.
Before delving too deeply into that, let’s circle back to the last Botox appointment. The MDS asked how things were going and we covered the usual issues with sleep, swallowing, forgetfulness, and rigidity. She’s less concerned about a recent swallowing workaround than I am — ice cream overindulgence in lieu of proper meals — and said that for now I should stick with whatever works.** After skimming the GI’s endoscopy notes, she confirmed there’s not much we can do about blockages caused by YOPD muscle dysfunction and said to limit my diet accordingly. But pressing on my unyielding neck and shoulder muscles to map the injections gave her an idea.
Targeting muscles that aid with swallowing might not help, she warned, and could possibly worsen matters until this round of injections wears off. But if I was open to experimentation, so was she. Her proposal would require “robbing Peter to pay Paul,” as she put it, because the Botox dosage increase my insurer last authorized three to six months ago was already insufficient due to worsening dystonia between injections.^ I agreed to give it a shot anyway, no pun intended, and she lowered the dosages in a couple of right-sided muscles to conserve enough Botox for a new injection site.
The neurocognitive referral was made after discussing my wardrobe absentmindedness and the SSDI consultative examiner’s opinion that I’m cognitively normal in most areas and moderately to markedly impaired in a few others. I didn’t tell the MDS “It feels like I’m disappearing,” which would’ve been premature and overly dramatic when a few weeks of decent sleep might have me swinging from light posts like Gene Kelly, but we’re heading in that direction if nothing improves. She furrowed her brow and asked if we — meaning the university — had done an evaluation yet, explaining that, if nothing else, it’s helpful to establish a baseline. That brings us to Tuesday.
As I approached the handsome multi-story building, I barely felt my backpack, but I was weighted down by something else: either neurosis or the finality of fate. I expected a comprehensive screening to reveal deeper cracks in my cognitive function than the brief consultative exam had done, in which case reading its results would be like looking into a crystal ball and seeing your own death. My other concern was running into Crankenstein’s friends and colleagues, which didn’t happen on this occasion, though I overheard a patient’s father enter the main lobby and announce “We’re looking for Dr. XYZ,” a familiar name in our household, as his kid ran to the directory.
The neuropsychologist’s waiting room was small and tranquil, unlike the bustling GI and neurology clinics to which I’m accustomed, and I was quickly seated in an office the size of a walk-in closet. Dr. So-and-So, a trim and nattily attired man pushing 60, arrived in a white coat, a detail that always amuses me because of Crankenstein’s aversion to wearing hers. (“If they’re wearing a white coat, they’re a midlevel. Fleece zip-up, they’re a physician,” she once joked as we traversed a busy hospital skybridge teeming with both.) He asked about my medical and mental health histories, focusing mostly on the chronology of my Parkinson’s symptoms, and collected a family history as well. I passed along my concerns and observations, along with those Crankenstein had written in my notebook.
At the conclusion of our interview, Dr. So-and-So, who was easier to talk to and appreciably less weird than the SSA contractor, excused himself. A grad student we’ll call Sadia, who wore a hijab and a frayed cardigan sweater, introduced herself a moment later and took his place behind the desk. She explained that some of the exercises would be extremely easy and others quite difficult. “It’s normal to get frustrated,” she said. “Just remember, this isn’t school and you aren’t being graded. There are no trick questions.” Her earnest, gentle demeanor took (some of) the edge off a stressful situation, which I greatly appreciated, and we occasionally joked between exercises.
First I was shown geometric designs for a few seconds and asked to draw them from memory. Then I was given a series of numbers to repeat in order. There were word tests, things like “I’ll say a letter and you’ll list things that start with it, except you can’t use names or places. So if I say ‘F,’ you can say ‘football’ or ‘flag,’ but not ‘Frank’ or ‘France.'” There was a lengthier and more complicated version of the ‘apple, penny, table’ test, which lasted several rounds — and much to my dismay, a second part introduced a slew of new words. A third round of yes-or-no questions followed, like “Was the word ‘celery’ mentioned in the first group?”
She read a series of paragraph-long stories and quizzed me on the details; other tests involved recreating images using sets of blocks. There was a visuospatial exercise I probably bombed, based on my performance in our practice session, and a series of general knowledge questions that made me feel like a Jeopardy! contestant. (During a break afterward, I told her I’d almost answered “Who is Lewis Carroll?” when asked who wrote Alice in Wonderland. She laughed and said “You should’ve! I already felt like Alex Trebek.”) Altogether, there were quite a few tests and I’ve probably already forgotten a few of them.
Some were timed, including the longest and most complicated, which was simple on its surface: I was allotted a half-hour to complete an easy task, which Sadia interrupted at random intervals to say things like “In 15 minutes, write your name on this sheet” or “Ask me this question in 10 minutes.” Like many of our previous exercises, it sought to distract and disrupt. I would’ve breezed through it just a few years ago but felt I did poorly this week. We wrapped things up with a couple of questionnaires about my mood and then I was free to go. She thanked me for hanging in there and I returned the sentiment, relieved it was over.
The results aren’t back yet but Dr. So-and-So will call next week to discuss them. I’m no less fatalistic about it now than I was before, partly because my brain felt more like the undead from the “Thriller” music video than a peppy extra in a Jane Fonda workout by the time I made it back to the parking lot. At least the assessment was only done once, not in reps of six or eight.
* I wish I could say it was a transformative sight, Jane Fonda in spandex, but no personal awakenings were provoked. A Barbarella poster was taped to my closet door at some point in my teens, mostly for its kitsch factor, and everyone remembers the dress from Klute, but my problem with Fonda as an object of desire was her strong facial resemblance to father Henry. (Politically, I’m not sure where to start, other than one viewing of Tout va bien was more than enough. My take on the ‘Hanoi Jane’ incident is uncharitable — she was an idiot — but I believe her regret is sincere and that she truly supports veterans. The post I linked to was written by Fonda and over a period of several years she’s personally replied to many of the comments by veterans and their families, which makes it more interesting than other articles about the subject.)
** Had she suggested soup, JELL-O, or the bland diet, I would’ve developed an eye twitch. Once you’ve had IBD for almost 40 years, you’ve consumed enough broth, JELL-O, and bananas for several lifetimes.
^ Her office will request another increase prior to my next appointment.