Parkinson’s: A Year Later

You may have noticed I’ve been AWOL lately, but I’ll return with more TV movie reviews this summer. Earlier this month I planned to write a post about the ways in which my life has — and hasn’t — changed since being diagnosed with young-onset Parkinson’s disease last June. The anniversary of that date came and went, lost in the shuffle of everyday life, including some YOPD nonsense that’s been taking up a lot of my time these days. I might as well address some of it now.

Parkinson’s is a rearranger. Like any big, unexpected setback, it blindfolds you and spins you in circles, then cuts you loose to comically stagger around and attempt to pin the tail on the donkey of your new, unwanted life. It rattles your self-perception and throws your hopes and dreams for the future into doubt, and it strengthens some of your relationships while revealing cracks in others.

Weirdly, it’s my relationship with time itself (cue the Alan Parsons Project) that YOPD has altered the most. It’s a disease that primarily slows your movement but can also cause sudden, dangerous accelerations, and I’ve found that it has a similar effect, both literally and figuratively, on time. You might hear the ticking of clocks that are silent to your peers and feel gripped by the urge to do as much as you can now, before the opportunity’s lost forever, but more often than not I feel trapped in slow-motion or encased in concrete. Simple tasks I used to do on autopilot, while multitasking, like washing and folding laundry, now require unusual amounts of concentration and physical energy.

Arm rigidity and slowness were two of the chief symptoms that kickstarted a lengthy, exasperating diagnostic process in 2021, and I hoped that once the problem was identified a doctor could fix it. Instead, I found myself sitting in a physical therapist’s office yesterday like a high schooler sullenly serving detention. The neurologist suggested it after I showed up to my last appointment with an arm covered in bruises following a recent fall, just as she sent me to speech therapy this month to help with swallowing difficulties and a softening voice.

These therapy appointments reproduce like Duggars or troubled Tesla CEOs; one begets another. As it stands now, there are 30 in my near-future, including the LSVT LOUD program, but maybe good behavior will earn me an early release from PT. It’s demands like this on my time, and the plodding realities of making it through the average day with uncooperative limbs, that have sadly drawn my attention away from Judith Light’s plights-of-the-week. I’ve even stopped checking YouTube every few days for a full-length copy of Deidre Hall’s Woman on the Ledge, as sure a sign as any that I’m temporarily overwhelmed.

The good news is levodopa helps. The bad news is my small intestine — where it’s absorbed — is as bumbling and inept as Peter Sellers’s Inspector Clouseau, which sometimes weakens its efficacy. Things haven’t been great these last few months, particularly with dystonia and sleeplessness, and last week I had a swallow test that confirmed pills are getting stuck in my esophagus. That’s a heckuva lot better than getting caught in your airway, a common Parkinson’s concern, but now we need more testing to determine why it’s happening.

You can probably see why I sometimes feel trapped, and a few months ago I came up with a strange (to some people) escape: I’ve been pursuing hobbies, like making dioramas and miniature houses, that will only become more difficult as my dexterity worsens. My goal is to acquire the skills to make a 1:12 scale replica of my current home from scratch, since its layout is impractical for someone with mobility issues and my stint here will probably be shorter than expected.

As I learn better strategies for working within my limitations, which is one of the goals of my physical therapy, it should be easier to make more time for this site, which I hope to transfer to a new domain with better hosting next year. There are also a couple other projects in the works that I’ll unveil this fall. In the meantime, I hope everyone’s happy and healthy and emotionally preparing themselves for the day we talk about Mary and Rhoda, because it stirs even stronger feelings than Thanksgiving Day for many of us. 

… But wait, there’s more!

Here’s the first house kit I completed, a lighthouse keeper’s cottage. It runs $45 and is as simple to assemble as anything you can purchase. I went with half-scale but a larger version is available at a higher cost.

Before cutting, gluing and staining my own floor planks, I painted the subfloor in case any of it could be glimpsed through gaps in my work.

Next, a scene from Three Men and a Basenji, a direct-to-streaming sequel produced by Steve Guttenberg and starring some unknowns he found on Craigslist. These are all 3D-printed resin figures I purchased and will paint myself. The room will be properly furnished once the lighthouse is done; for these photos I used whatever was handy.

… And now, the mostly-finished exterior (which has since gotten a door knob). That white paint is from another project; it’s not what was used on the house.

The lighthouse itself is a bigger undertaking. I’ve taken some inspiration from Maine’s Portland Head Light and would like to eventually build both a matching seascape and a boat.