I’d just taken a seat in the PT’s waiting room when my phone buzzed: “Unknown Caller,” the screen read, and I sent it to voicemail. The garbled transcript said to please to call the ENT’s office. My guess was there’d been a waitlist snafu, since my August appointment had recently been moved up to the end of July.
Once the PT cut me loose, I waited in the shade for Crankenstein, who was wrapping things up with a patient a couple blocks over, and returned the call. There’d been a waitlist error: the July appointment was with an NP. My ‘concerns,’ as they called the LSVT LOUD clearance and swallow issues, required one of two ENTs with Parkinson’s training. The earliest they could fit me in was now September, which displeased the scheduler. She asked if I’d wait on the line while she made another call.
“Could you be here tomorrow at 8 am?” she asked a few minutes later, and I said sure. Is it convenient? Nope. But getting this done before the EGD, so my GI has the ENT’s input on the swallow study, will save time in the long run. The rest of July should be appointment-free: I no longer have to see ‘Midge,’ the PT assistant, next week, as Crankenstein hoped for after our unusual introduction. I didn’t request a cancelation but ran a few questions by the physical therapist, who opened the appointment by asking if I’d given bracing any thought.
“Midge said I’m close to needing one but that she wouldn’t recommend it yet,” I volunteered. “I wasn’t sure what sort of brace she was talking about.”
The PT confirmed it would be for my ankle and said I might benefit now, if I’m open to it. My preference was to try the hiking stick first. Then she answered my brace questions, including why it might be helpful, and showed me some options insurance would cover. (Her answer: I need the stability since my rigidity creates a situation similar to foot drop.) In early August, after I’ve given the stick a fair shake, we’ll discuss its utility and whether a brace would be more helpful in some settings. It looks cumbersome since they’re tall, extending almost from foot to knee, and I’m short.
We went through a few neck and walking exercises that I’m supposed to repeat at home, and I asked for clarification that our goal is to reduce falls since Midge said her goals were to improve my speed and return me to full-time work. That surprised the PT, who murmured “Did she have you confused with someone else?” as she pulled up Midge’s notes. Then she said what Crankenstein already told me, which was basically “Slowness is a central part of your disease and there’s only so much we can do about that.”
She also explained something I hadn’t given any thought to before, which is that trying to move quickly can backfire with cogwheel rigidity — which is one of my most irksome left-sided problems — and make you slower or less safe. Being too slow is also dangerous, since it contributes to fall risk, but I should generally expect to be on the slower side of things. Full-time work, she added, is not on her list of concerns, which was unsurprising since a majority of YOPD patients retire within 10 years of symptom onset, and I’m a year or two past that benchmark.
Congratulations to anyone who made it through all this boringness. I’ll spare you details of the Thai carryout that Crankenstein and I grabbed on our way home and will try to be more entertaining tomorrow.