May of 1998 my right hand and right leg started to shake during a college piano performance. I chalked it up to extreme nerves.
Around 2002, I lost my sense of smell. It never returned.
Once during 2008 my right hand started shaking so badly that I spilled my hot chocolate. I couldn’t explain it, but it seemed like a one-off, no big deal.
In August 2016, I was playing the organ at church when, in the middle of the sacrament hymn, my right hand began shaking uncontrollably. I couldn’t finish playing the hymn. I turned to the congregation and apologized. That was the last day my right hand was still.
In February 2017, I saw a movement disorder specialist in Savannah, Georgia. It took her all of five minutes to diagnose me. “You know you have Parkinson’s, right?”
I didn’t even know what Parkinson’s was. “How can you be sure?” Couldn’t a tremor be a lot of different things?
She said, “Walk down the hallway.” I did. Then she asked, “Did you notice that your right hand doesn’t swing as you walk?”
I hadn’t noticed. I walked the hall again. Sure enough, my right arm stay pinned to my side.
A CT scan ruled out a brain tumor. So it was Parkinson’s—incurable, and still most commonly treated with carbidopa/levodopa, a medication that hasn’t fundamentally changed since the 1970s.
Not long after my diagnosis, I heard about deep brain stimulation. I was intrigued, and scared. After a year of testing, in late 2020 my insurance approved the procedure.
In February 2021, surgeons implanted a wire through the top of my skull to the bottom of my brain. A year earlier, I would have had to be awake during the surgery so they could test placement in real time. Fortunately, now the procedure is done while the patient is under anesthesia.
In March 2021, the wire was connected to a battery pack implanted under the skin in my chest.
In April 2021, the device was turned on. Here’s the before-and-after video of that magical moment:
This same day in April 2021 is also the first day that I noticed a tremor in my left side. The wire I just had inserted into the left side of my brain would only help with the tremor on my right side.
On December 13, 2023, I had a second wire implanted on the right side of my brain.
Now it’s 2026. As my tremor continues to worsen, I have to keep turning up the stimulation to manage it. But pushing it past a certain point has an unfortunate tradeoff: it starts to impair my speech. So I’m still adjusting, trying to find the perfect balance.