Right Notes: musician fights rare condition

Posted on 27 April 2017

Montana Health Journal focal dystonia

Electronic device brings back musical life for musician Reid Merley

By Marti Ebbert Kurth

At the start of every orchestra concert when the concertmaster cues the principal oboe player to blow the note “A,” that pitch becomes the standard the orchest­ra tunes to.

For Glacier Symphony principal oboist, Reid Merley, being in perfect control of that note, and the thousands that follow it, has been a skillful combination of his breathing, muscle tone and nervous system for over 46 years, ever since he first began playing the oboe at age 11.

Glacier Symphony oboist Reid Merley (David Reese photo)

But one day in 2007, when Merley and fellow oboist, Sherry Parmater, were rehearsing, Parmater noticed that Merley was having trouble holding his instrument still. “I was shocked,” she said. “I looked over and his hand was shaking and I thought ‘What is that?’ The next day we were playing the concert and he was playing a flute and he couldn’t keep the flute to his mouth. I had never seen anything like it until that day. His arms were suddenly shaking a lot.”

It was on that day that a mysterious tremor began to exhibit itself, appearing only when Merley brought his oboe, or any of the other wind instruments that he frequently is called upon to play, into position and began to blow into them.

The shaking came seemingly out of nowhere, with no other symptoms such as pain or headache to precede it. Merley says until that day the tremor had never happened while he was in a concert situation and he was extremely upset at its appearance.
At the time, Parmater and Merley were living together in Wyoming where she was executive director of the Wyoming Symphony. The symphony conductor suggested he see a neurologist, who diagnosed it as an essential tremor and prescribed anti-tremor medications to control it.

But the medications didn’t help much, Merley said.
About a year later, Parmater visited a bookstore around the corner from her symphony office. The bookstore owner knew she was a musician and told her about a new book she had just gotten in called “Musicophilia: Tales of Music and the Brain,” by Dr. Oliver Sacks. Parmater sat down with the book and had an “aha” moment when she came to the chapter describing musicians who would shake when they were playing. In about 2006 medical researchers had discovered a condition they call Musician’s Focal Dystonia, meaning the tremor happens only when musicians are in position and playing their instruments.

Early on, treatment for the malady was limited to anti-tremor drugs and possibly cutting muscles and nerves to reroute the impulses. But Merley was reluctant to go down that path. The couple moved back to Kalispell, and Merley, an Army veteran who had played the oboe, tenor drum and piccolo with the 6th U.S. Army Band in the 1970s, convinced the local Veterans  hospital to help him get treatment at the hospital in Helena.

He had some relief with anti-tremor drugs — enough that he could continue to play his oboe again with the Glacier Symphony in 2009. However, in summer of 2010 when he was scheduled to solo with the Festival Amadeus orchestra, he had to bow out. “I was rehearsing with the quartet for my evening concert and I couldn’t keep my oboe still,” Merley said. “Reluctantly I had to cancel my performance.”
The musician, a 1983 graduate of the San Francisco Conservatory of Music, who later played eight years with the Master Sinfonia Chamber Orchestra, stopped playing his instrument completely. He thought his music career was over. “I was ready to put it on the back burner,” Merley said.

Parmater wouldn’t give up, though, and she kept encouraging Merley to explore new avenues of treatment. In 2011 he went to the Veterans Hospital in Portland, Oregon, to a newly opened movement disorder unit. The doctors experimented with several new drugs, including injecting Botox into his arms, none of which stopped the tremors, he said. Parmater remembers her frustration with the treatment.  “He went through a huge amount of trial and error and nothing really helped,” she said. “I just knew from reading Musicophilia that he had Musician’s Focal Dystonia, which is centered in the brain. But they kept insisting it was a nerve disorder.”

A breakthrough came for Merley when he was referred to Kalispell neurosurgeon Dr. Benny Brandvold. During the exam, Merley and Parmater told him how the tremors only happened when he tried to play his oboe, and the doctor agreed that his symptoms were caused by a malfunction in his brain and not from prior neck injuries. Brandvold wrote a letter to the Veterans Administration with his diagnosis.
In 2012 Merley went back to the Portland veterans hospital to be evaluated for surgery. He met with neurosurgeons Dr. Justin Cetas and Dr. Nathaniel Whitney. Both doctors were experienced with deep brain stimulation surgery on Parkinson’s patients, a procedure where electrodes are implanted in the brain producing electrical stimulus to regulate abnormal impulses. A pacemaker-like device is placed under the skin in the upper chest and attached to a wire that travels under the skin connecting to the electrodes in the brain.

But neither surgeon had ever performed this procedure before on a person with Musician’s Focal Dystonia. It differs in that the brain over-fires in a specific location, similar to a circuit that has worn out from years of repetitive action, such as bowing a violin or holding the mouth precisely to create the perfect note. In Merley's case the surgeons would need to identify the exact target location where his brain was over-firing, causing his hands and arms to shake when he played his instrument. The only way to find that spot was for him to be awake and playing his instrument as they probed his brain.

Parmater accompanied Reid for the first hours of the pre-surgery where a cage was screwed onto his skull so that his brain could be accurately targeted. During surgery after they exposed his brain, they called for Parmater's oboe, a plastic instrument that could be sterilized, handing it to Merley to play in order to reproduce his tremor.
Now, Merley turns on the stimulator only when he is going to play. He says the sensation is not uncomfortable. “When I turn on the machine I feel it in my body,” he said. “I stop breathing for a moment and I get an electric buzz on my right side.” •

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