Stop me if you’ve heard this one before: there was another PT scheduling snafu today that meant I only saw the speech-language pathologist. The first time, I was understanding. This morning… I was still understanding, despite my exasperation, because the SLP had just asked me to schedule four more appointments with her. Since I’ll be in the building anyway, the PT delays aren’t as inconvenient.*
Having completed the swallow evaluation last week, it was time for the speech evaluation. The SLP put a microphone in front of me and monitored software that measures volume, pitch and other variables as she guided me through a slew of tests. Then she started teaching me how to ‘think loud,’ which is a central element of the LSVT LOUD therapy we’ll start later this summer, and we repeated the tests to measure my improvement.
The way she explained it, one of the biggest ways Parkinson’s softens your voice is by making you think that you’re speaking at a higher volume than you are, but you can have other PD-related speech problems as well. In my case, facial muscle rigidity and respiratory issues are also implicated. “What kind of respiratory issues?” Crankenstein asked when she called me during her lunch break to ask about the appointment.
“I’m not sure, exactly, other than I apparently can’t do anything right these days and breathing is no exception,” I joked.
We both noticed sometime last year that I’m breathless more often than in the past, even without exertion. It’s become particularly irritating to me around bedtime, as I wait for my final dose of levodopa to kick in. Near the start of the evaluation, the therapist asked “Did you know you’re running out of air when you speak? I can already hear the wheezing.” Now it’s one more thing we have to work on.
Already I felt dejected, which intensified like Wilford Brimley’s diabetes as we moved along to vocal scale exercises and, eventually, to shouting. “It’s a soundproof room, be as loud as you can!” the therapist exhorted as she followed her own advice and achieved a startlingly impressive volume for a person so wispy. I used to have no trouble being loud, as you’d expect of someone with my background, but the evaluation concluded with the therapist saying there’s also non-LSVT speech and breathing work she wants us to do together and that it will take at least four appointments.**
I don’t remember if I mentioned this in “Bitter Pill,” but we can’t schedule the LSVT until I’ve been seen by an ENT. By the time all of this is said and done, I’ll have had at least 22 speech therapy sessions, plus the swallow study that’s coming up later this week. For the moment, dealing with Parkinson’s is like having a full-time job. And that’s as good a segue as any into our next subject.
Sprung from the joint an hour early due to the PT cancelation, I took a Lyft to the library, where I copied and faxed some documents. On the walk home I stopped by a mail collection box to deposit an envelope that had to be posted by the end of the week. It was cool and breezy still, and the smell of fresh grass clippings and newly laid mulch drifted from the nearest park. Before I was too far away from the library, I stopped to check my email and verify the fax had been successful. My back was already sweat-drenched even though I wasn’t physically taxed, another Parkinsonian gift.
Moving past a schoolyard where Orthodox boys played, I waved or said ‘good morning’ to neighbors pushing strollers, trailing dogs and power-walking home from Starbucks holding sugary drinks. Like most of them, I studiously ignored the Torah scholars speed-walking to shul. “What’s new and exciting?” I always want to ask, like Melanie Griffith in A Stranger Among Us. But these bespectacled young men in their mostly identical suits wear expressions of perpetual constipation around non-Orthodox women and would be even more disdainful if they knew my grandparents had rejected Orthodox Judaism in favor of liberal Reform practices.
My mom’s extended family, whatever their religious differences, conforms to the Jewish stereotype of being rotten with lawyers; one of her cousins, who works in disability rights, suggested I start the SSDI claim process soon after the YOPD diagnosis. At first I didn’t want to listen; it’s hard when the argument is basically “Your health was already a mess pre-Parkinson’s and now you’re officially screwed for life.” After some complicated back-and-forth about it with both myself and Crankenstein, I decided last month to relent and get the ball rolling since my age all but guarantees denials across a span of several years. I’m not ready to be put out to pasture just yet, but the ship has probably sailed on full-time work.
There’s a lot about the application process that leaves you feeling dehumanized and worthless, as I experienced while filling out the forms that I faxed and mailed this morning. I was on my way back from therapy that’s supposed to teach me how to stop choking; my jaw and the left side of my body were clenched, my facial muscles frozen; and my back was covered in sweat. My arm was freshly bruised after another near-fall a couple days ago, and my car was in the garage because it’s hard to drive with an immobile neck and diminished spatial awareness. Once I got home, post-exertional tremors would keep my left side buzzing for a half-hour.
And on top of all that, I’m supposed to demean myself by pleading my case to a government agency that basically only asks one question in 20 different ways: “Just how incompetent are you?” And no, that’s not internalized ableism; it’s genuinely at the crux of all their questions. You tell them, and your medical records tell them, things you don’t even want to share with your spouse or admit to yourself, and 9 times out of 10 they still tell you to fuck off. I’ll stop here but you get the picture; I hate everything about this. Maybe I’ll think of it next time the speech therapist yells “Louder!”; it might raise my shouts to our target decibel level.^
* I’m cautiously optimistic the scheduling mistakes are behind us, because the previous coordinator was a 20-something who didn’t seem interested in her work (though she had the time and patience to dye her hair a metallic shade of red velvet cake not commonly found in nature), and the new one was a no-nonsense butch sexagenarian with a rainbow lanyard around her neck — a demographic that’s typically good at getting things done. Judging by her knowing sighs and narrowed eyes as she sifted through my chart, this wasn’t the first time she’s cleaned up that coworker’s messes.
** “Why do you all shout so much?” Crankenstein once asked about my family, and I had to remind her that my dad was nearly deaf. (He had surgery a couple years ago that restored some of his hearing, but still needs aids to converse.) Some of us also had to shout at work to be heard over loud equipment, but we would’ve been jarringly noisy to her regardless because that’s what happens when large families get together. In her small household, it was only her dad who was loud.
^ Another of Crankenstein’s questions: “Did you shout ‘Hey-hey!’ at the therapist?” She was referring yet again to the Reba theme song. I told her no, and I also refrained from yelling “It’s all your fault, Mama, it’s all your fault!”, doubtful the speech-language pathologist is a Weezer fan.