The manometry results are in and — here I’ll pause to scream silently into the void — further evaluation is recommended. No specific cause of my swallowing issues was identified but only half of the recorded swallows were considered intact; the rest were marked failed, ineffective or fragmented, and the velocity of my esophageal motility was flagged as low.
I’ve not heard from the GI yet but expect he’ll agree with me that further testing is currently pointless. We know it isn’t Crohn’s or reflux; the endoscopy looked fine. The results of the barium swallow study and manometry can be explained by Parkinson’s, which is known to cause esophageal dysphagia and dysmotility.
Unfortunately, there’s not much research about it and treatment options are also sparse. My frustration spilled forth in a discussion with Crankenstein: “Of everything we’ve dealt with so far with YOPD, this is the worst,” I contended. “Because it’s the most serious complication and they run tests and say ‘Yeah, your swallowing’s screwed up, but we can’t do much about it.'”
“That’s why you’re doing LSVT and EMST,” she countered. “That’s what you can do.”
“It’s not enough,” I said. “If that’s the best they can do, I’m telling you, I’ll die of aspiration pneumonia in my fifties or sixties.”
In the moment, that was truly how I felt. My swallowing problems usually begin in the mouth, before anything’s in my esophagus, and the muscle discoordination continues from there. It’s why I swallow too early or too late; it’s why things stall in my chest and why my digestion has slowed in general. I don’t have much hope that will change.
Later, when we were both less frazzled, we returned to the subject. “It’s offensive that choking is the deadliest complication of Parkinson’s and there’s a lack of research, a lack of meaningful ways to avoid it,” I fumed. “They know this is what kills us, but what are they doing about it?”
She thought about it and raised her eyebrows in a ‘fair point’ expression, nodding. Medical journal articles about Parkinson’s esophageal dysfunction were on her laptop screen, and I hoped it was for her edification and not that of ‘Niles.’
It’s important to clarify that LSVT and EMST are genuinely helpful and I’m very grateful to have access to those therapies. At the same time, I’m currently swilling an antibiotic twice a day — in liquid form, like a child — because my PCP thinks I’m silently aspirating overnight.* My two biggest Parkinson’s fears are pneumonia and feeding tubes, and I’d rather those grim possibilities feel exponentially more remote than they have lately.
To end this on a lighter note, one of the PCP’s suggestions for reducing the risk of overnight microaspiration was to buy a big wedge pillow. I don’t want one, not after the years of work it took to find an acceptably comfortable pillow for cervical dystonia, but I pledged to try it anyway. My next bed will likely be an adjustable one, so I can sleep in a sitting (or almost sitting) position. Crankenstein and I, both fans of vintage Roseanne, had the same idea: “We’ll call it Craftmatic Adjustable Bev.”
* That the barium study didn’t show aspiration apparently means less than it seems, since there are different types of aspiration and it only captures a few swallows anyway.