All good slippers are ancient and covered in dog fur; mine are no exception.

Some of you have reached out in recent weeks with words of encouragement or to ask what’s going on, and I wanted to provide a quick update and also say thanks. Here’s where things stand:

  • After nearly two years of strange health problems and many unhelpful tests and appointments, my PCP referred me to a neurologist. That doctor then referred me to a movement disorder specialist (MDS), another type of neurologist, believing I had cervical dystonia.
  • In February, the MDS confirmed that diagnosis and also found I was generally dystonic. I’m an all-around shaky sonofab*tch, and she noted other movement disorder symptoms that are mentioned here.
  • The most effective treatment for dystonia is Botox. Today was my first round of neck injections, with a bonus shot or two in my shoulder. I’m not fearful of needles, as you might expect of someone who injects immunosuppressants 78 times per year, so that was uneventful, though I’m concerned my neck might start behaving like a Real Housewife now that it’s been Botoxed. If the injections work, she’ll administer them quarterly.
  • This week the MDS additionally suggested I try carbidopa/levodopa, also known as Sinemet. This can help with some forms of dystonia, though it is more widely known for treating Parkinson’s, which has its own special relationship with dystonia. I agreed to try it. That experiment begins in the coming days and I’m having a brain MRI next week. My symptoms are largely left-sided and that can help rule out a stroke, which is unlikely at my age.
  • 3/20 update, Botox: It took the Botox a week to settle, just as the doctor predicted. My neck is no longer stuck in one place, and any fears that it would turn into Luann de Lesseps were misplaced. Unfortunately, my shoulder remains a work in progress. It was hard to open my mouth for a couple days post-Botox, which dampens whatever interest I might’ve had in attempting to treat my oromandibular (jaw and mouth) dystonia with injections.
  • 3/20 update, MRI: My brain MRI was normal, as the neurologist expected; it was a formality to verify there was no evidence of stroke or multiple sclerosis. There was also a neck MRI, which showed arthritic damage and several “mildly bulging discs” that might exacerbate my arm and shoulder problems.
  • 3/20 update, Levodopa: I’m taking carbidopa/levodopa to see if my motor symptoms respond to it. I’m not sure what upset my wife more, that I was prescribed this medication or that I’ve had a positive response to it, but so far it has gone well. If that continues, it raises the question of whether I have dopamine-responsive dystonia (DRD), which seems unlikely for a couple reasons, or if my dystonia is a feature of Young Onset Parkinson’s Disease (YOPD). Since I have some symptoms of the latter, going back to as early as 2013, we’re more concerned about that possibility right now.

How do I feel about this? I don’t know. It seems pointless to get worked up over anything when we’re uncertain whether the dystonia will worsen, or if it’s a standalone issue or harbinger of something else. My wife is wired differently and this has been hard on her—she was unmoved by my idea to review Awakenings (streaming free at Amazon!) once I’ve taken levodopa for a few weeks.

There was a funny moment last weekend, when we headed off on a walk and I noticed her hanging back. “Are you examining me?!” I asked indignantly. 

“No!” she answered unconvincingly, before adding, “I already examined you this morning, as you walked into the grocery store.” 

“What were your findings?” I wondered.

“Reduced arm swing, but I’ve watched that decrease every day I’ve known you, and it wasn’t great to begin with.”

The next day, as we wandered around a museum, I glanced at the arms of everyone around us, and was slightly aggrieved to find almost everyone’s arms noticeably swung, other than those belonging to me and a couple of elderly men. It figures, of course, that I fit right in with the grandpa set—I mean, look at my house slippers.

In a few weeks, once we know whether the Botox is helpful or if the medication trial worked, I’ll either update this post or write a new one. This will include an explanation of why some symptoms were red herrings and others went overlooked. And yes, I’ve got some reviews and “Golden Girls” content in the works.