For most people, gaining 25 pounds over the course of a year is not cause to celebrate. But Ron Nickelson sees the change as tangible evidence of how far he has come.
In November 2002, Ron began noticing some concerning symptoms. These first presented themselves while jogging in the Cincinnati snow: the farther he ran, the more his left foot would turn to the outside. After 10 minutes, the only part of that foot making contact with the ground was the outer edge. Concurrently, he began to experience a tingling down the outside of the little finger on his left hand. After 14 months of managing (and receiving a wrong diagnosis), it was clear that he needed to see a neurologist, and, in January 2004, Ron was diagnosed with Parkinson’s disease at the age of 49.
The movement disorders associated with Parkinson’s disease can vary. Patients may have dystonia – persistent, painful muscle contractions or spasms – and/or dyskinesia – a more rhythmic, involuntary muscle contraction that presents as jerking or twitching. Medications to control the other neurological symptoms of Parkinson’s can exacerbate these movement disorders.
Ron didn’t experience any dystonia for the first five years of his Parkinson’s. But when dystonia did present itself, Ron recalls a progression over the ensuing years. “The dystonia would be worse when I wasn’t on my medication. It would almost always begin with painful cramping of my left toes. The passage of years brought dystonia to my right toes, down the center of my abdomen, and underneath my right shoulder blade. I would also have trouble articulating my thoughts as the numbness on the left side of my face worsened.” Eventually, he came to see medication “off times” as synonymous with dystonia.
But his medication would often present another challenge. “It would alleviate all the dystonia, but if I took too much, I would flip from dystonia to dyskinesia. It was becoming more of a struggle to walk the tightrope between the two by taking the right dosage.”
“A movement specialist told me that I was the ideal candidate for DBS,” recalls Ron. DBS (or deep brain stimulation) is a common treatment for the symptoms of Parkinson’s that involves surgically inserting thin wires into the brain. The wires emit electrical pulses that help to regulate the Parkinson’s symptoms.
“But I had heard about focused ultrasound through the Michael J. Fox Foundation, and I had been keeping an eye on its progress. For my situation, a noninvasive option was worth waiting for.”
On December 22, 2016, Ron was the second patient treated at The Ohio State University’s Wexler Medical Center in a clinical trial investigating focused ultrasound for Parkinson’s dyskinesia; two days later, the story was front-page news in The Columbus Dispatch. Researchers used focused ultrasound to target a portion of the brain that is associated with dyskinesia. But they are also interested to see if the treatment might help alleviate dystonia symptoms.
The focused ultrasound treatment is unilateral, so only one side of the patient’s brain is treated. Ron opted to have the right side of his brain treated to alleviate symptoms on his left side, where they predominated. On the day of treatment, Ron was instructed not to take his medication.
“During the treatment, I noticed an improvement in my speech right away,” he remembers. There was also an immediate change in his dystonia. “Normally, my dystonia would run right down the center of my abdomen. But, during treatment, I noticed that I had dystonia only on the right side.” And, in the weeks following his treatment, Ron also noticed that his dyskinesia improved dramatically.
A year after treatment, Ron is still seeing positive effects from the focused ultrasound.
“I have more energy, and I’m able to control my medications better. I have not had to adjust my dosage in over two years. I’m able to work full-time.”
Although one outcome was unexpected, Ron says it’s a strong testament to his improvement. “Before my treatment, I had lost 25 pounds. And being 6’4″ with weight only 182 lbs. to begin with, I could ill-afford to lose those 25! I attribute it to burning calories with all of the shaking. But in the past year, I’ve regained that weight.”
And Ron still thinks he made the right choice in waiting for the focused ultrasound clinical trial rather than opting for DBS. “In my experience, there have been no negatives. Nothing is worse after focused ultrasound therapy, and I don’t have to deal with equipment, batteries, or airport metal detectors.”
“Somebody has to be a pioneer. I’m so glad the folks at The Ohio State University were able to do it,” he adds.