As I enter the 17th year since my Parkinson’s diagnosis, anxiety surges forth from the deepest recesses of my being, a primal “fight or flight” response that meets my brain’s inability to process the simplest of tasks halfway, swirling together in a mix of panicky fear and reasoned concern. At least temporarily, I am back in the darker version of the hellish never-world of my pre-DBS (Deep Brain Stimulation surgery) life.
Sheer will—my only faithfully reliable tool—gradually succumbs to Parkinson’s mind-numbing exhaustion until disaster is barely averted by a loving wife’s seemingly inexhaustible supply of patience and attention. Before being rescued by DBS in 2014, my first downward plummet enjoyed a far softer landing than my most recent backslide. Seven years earlier, I asked myself how I would handle the next, inevitable descent into the abyss—It is a question that I still can’t answer with confidence.
There was a trigger to all this: eight weeks ago, I underwent right knee replacement surgery. Weighing the painful procedure’s scheduling—the middle of a pandemic just four days before Christmas—against the eventual positive outcome of being able to hike and work out again was a no-brainer. With my Parkinson’s progression accelerating, the procedure seemed like a good idea.
But once home the evening after surgery, my knee would not stop bleeding, requiring a drive back to the hospital to repair the hematoma with an additional operation. Two days later, we greeted Christmas Eve at home armed with Oxycodone and lots of ice, thinking that the worst was over. We were wrong.
Parkinson’s disproportionately affects my right side, ordinarily waking me after a few hours of sleep even before the two operations, and no amount of painkillers was enough to induce post-surgery slumber. I was trapped for weeks in a grueling nightmare of constant wakefulness, anxiety, and pain. Sitting, standing, lying down, all positions demanded relief, usually after just a few minutes.
As my knee heals, there has been what I can only pray is not a permanent setback. An increased mental fogginess and a slow-moving, painful stiffness of every muscle and joint in my body have begun to dominate my intensifying “off times,” proportionately diminishing shrinking “on times.” When “off,” I cannot drive, think clearly, or converse. The positive impacts of medication and DBS are swiftly becoming less effective. Maybe this is due to post-surgical inactivity and lack of rigorous exercise. Maybe not.
I’m writing this as a warning to folks in a similar situation with Parkinson’s. Expectations are everything while in an egoic state of mind, which was where I was stuck despite my best efforts. I stumbled into the experience with no firm understanding of how a normal recovery would progress, never mind one complicated by progressive disease. Humbled and unable to meditate or even breathe properly, I was suddenly unsure of all but my firmest of beliefs.
I’m reminded once again that I’ve got one hell of a long way to go before truly understanding anything, but thanks to the blessing of the patient care of my wife, Laurie, I am ready to get back to it. In the past, I’ve taken pride in my ability to fend for myself, and it’s only now that I’m learning to accept help with grace. Thank you, Laurie; I am beyond grateful. I love you.