Change

Everything changes, and usually not in the manner that you or I envision.

Last November, I had a neurology appointment to fine-tune the settings in my Deep Brain Stimulator (DBS) in an attempt to be more responsive to rapidly evolving Parkinson’s symptoms. Such hardware adjustments are inherently tricky maneuvers, educated guesswork impacted by medication dosage changes and lifestyle modifications.

After extensive trial and error experimentation, we decided that my DBS was already emitting the optimal electrical pulses to my brain, and the settings were left unaltered. I did, however, leave the neurologist with the option to vary the system voltage within a set range.

Soon after getting home, I began experimenting and found that modestly increasing the right-side voltage seemed to slightly improve my bradykinesia (a slow, painful stiffness of limited mobility). I left the DBS at the higher voltage and forgot about it.

Toward the end of December, I had knee replacement surgery, a second operation to stop uncontrolled bleeding, and a surgical recovery heavily dependent on months of narcotic painkillers and physical therapy. Unable to access calm through exercise or yoga, my resilience suffered significantly. Already poor sleep patterns deteriorated further, as did my usually healthy diet.

Meanwhile, my knee healed just fine, but I seemed to be losing ground to Parkinson’s daily. My right shoulder began experiencing near-constant, excruciating muscle spasms that could only be relieved by round-the-clock muscle relaxant and increased levodopa. I couldn’t sleep or, at times, even pick up a fork. I grew desperate.

Finally, I stopped trying to think of solutions while quieting my mind as best I could. Out of the blue, I remembered the DBS adjustment made months earlier. The worst muscle spasms stopped almost entirely after dialing back the DBS controller to its pre-November voltage. What helped me just four months ago was killing me now.

Some changes, despite a daunting appearance, are easily made. Others are not. Perhaps the difference lies in the quiet, compassionate wisdom we bring to trying to understand.

Leave a Reply

Your email address will not be published.