We’ll get to physical therapy in a minute, but first: this weekend I got a shiny new toy, a label-maker. It’s the second I’ve owned; the first was a birthday gift when I was eight or nine. It was red and black with an alphabet wheel and you’d squeeze its handle with every selection to emboss the letters. The tape was expensive, or so my mom claimed, so I tried to conserve it by making my labels as concise as possible. They rarely stuck to anything for long, and it’s not like anyone was in danger of mistaking my Curly Sue videocassette for my brother’s, but it didn’t hurt to be sure.
“[Cranky] asked for boring presents,” my dad told my sisters when they wondered what I was like as a kid. “Felix wanted PlayStations and guitars and proton packs and she wanted bookshelves, pens and Cary Grant movies.” And label-makers. As an adult I’m not much different, and when Crankenstein was concerned that I’d become too withdrawn not that long ago, she tried to coax me out by asking “Could I interest you in… the Container Store?” — a place where I’m happy and she’s miserable.*
If I were Andy Rooney, a meandering ramble would now commence about how it occurs to me on this day in June — a month dominated by celebrations of increasingly meaningless and contradictory labels and fantastical revisionist histories of what actually happened at Stonewall — that I still conserve expensive tape by calling myself ‘gay’ rather than coming up with something that incorporates my astrological sign, the name of my family’s first dog or the street I grew up on, my favorite sexual position and Édith Piaf song, and the last four digits of my Social Security number, as is popular among today’s youth. But that’s not where this post is going, so let’s move it along, toots.
A surprise was waiting when I checked in for my physical and speech therapy appointments this morning: they’d accidentally double-booked me instead of scheduling the sessions consecutively, so my PT evaluation was moved to next week. Then I saw the speech pathologist for a swallow evaluation, which didn’t go quite as I’d hoped. She was nice and I’m happy to have been paired with her, but she immediately noticed some problems with my muscles and movement while chewing, swallowing, and performing other actions she requested.
“No shit,” you’re probably thinking, and I know those problems are precisely why I was there, but the neurologist had mentioned this might be a simple process that only required a couple appointments. Had that been the case, I would’ve been taught a few techniques and sent on my merry way. Instead, the pathologist said I’m high risk for ‘silent aspiration,’ and if that term is as new to you as it was to me, it’s not too different from regular aspiration; it just — as the name suggests — happens without much fanfare.
She recommended a barium swallow test that will establish whether I’m already doing it before devising our anti-choking plan of attack. In the meantime, I’m supposed to continue chewing primarily with the right side of my mouth, as I’ve done for some time now due to difficulties with the left. And I was instructed to brush my teeth just prior to eating, which reduces the risk of infection in case of aspiration. I thought I’d pass that along in case any of you have parents or grandparents at risk of aspiration, because it’s helpful information some of my relatives didn’t have when they could’ve used it.**
The swallow evaluation took long enough that we won’t complete the speech evaluation until next week, but she sent me home with a folder full of information about LSVT LOUD, a speech program she suggested if my insurance will cover it. I’d have to meet with her four times a week for four weeks and Crankenstein already told me to sign up for it because it’s considered the best therapy available for helping PD patients maintain their voices longer than the disease might otherwise permit. I’ve lost some ability to shout or pump up the volume, but if you’ve ever heard a bit of a Crankcast you know I’m still fine in one-on-one conversation.
That about covers it. I know this will upset some friends and relatives, and maybe I’ll feel a little mopey about it later myself, but it seems both premature — the swallow test might come back fine — and a bit useless when all of this is to be expected, anyway. It’ll be back to business as usual tomorrow, so tune in to find out whether I put a ‘dog’ label on Muriel while organizing my model-making materials and basement storage.
* As if to prove my dad’s point, I typically receive Uniball Vision Roller pens, an enduring favorite, or Container Store gift cards when no one knows what to get me for birthdays or holidays.
** Papa’s death was precipitated by MS-related aspiration. Years later, my maternal grandma’s dementia caused swallowing issues that weren’t as severe. More recently, her sister spent the last several years of her life in aspiration hell as her diagnosis was changed first from Alzheimer’s to Parkinson’s and finally to Lewy body dementia. I’ve kept that out of previous posts about Parkinson’s because I didn’t want it to muddle anything, but it’s germane to the aspiration discussion.
Aspiration is an unpleasant way to go (it’s what killed our Golden retriever, Molly, when she was only four years old), but getting back to my great-aunt, it’s important to stress her Parkinson’s/LBD has no genetic bearing on my neurological misfortunes. They’re common diseases, especially in old age, and she wasn’t a close enough relative for her history to be of any interest to my doctor. The current line of thought is that Parkinson’s is rarely hereditary and that some legitimate PD clusters within families are attributable to environmental causes, not genetics.