Saxophonist Joey Berkley was living his dream: he was playing jazz in New York City. But about 20 years ago, he noticed his left hand wasn’t cooperating. It got worse and worse.
“As soon as I picked my horn up and touched - literally just touched my horn - my hands would twist into pretzel shapes,” Berkley recalled in a conversation with Morning Edition host A Martinez.
Berkley was experiencing focal dystonia, a movement disorder marked by involuntary muscle contractions.
He said he “muscled through it” as best he could. But that meant he wasn’t just pressing down on the keys of his sax – he was crushing them. “My fingers would literally be bleeding afterwards,” he said. “I had to quit playing.”
Joey Berkley learned of an experimental procedure at the National Institutes of Health in Bethesda, Maryland, that involved placing an electrode directly into his brain.
The principal investigator of the study into the treatment of focal hand dystonia was Dr. Debra Ehrlich, a neurologist specializing in movement disorders.
“Even though it manifests in the muscles and looks like a posture of the hand, it's actually an abnormality in the brain that's causing that,” said Ehrlich. “And deep brain stimulation itself is actually using an implanted device. It consists of a battery that goes in the chest, and the battery is attached to wires. At the end of the wires are electrodes, and the tip of the electrode is put in a particular region of the brain.”
Despite how invasive and potentially dangerous that sounded, Joey Berkley said he had no second thoughts. “None at all. Music is all I've ever done. The feeling of not ever being able to play again was 100 times worse,” said Berkley.
Berkley had his surgery in March of 2021. After a lot of rehab, he regained enough control over his left hand to begin to record again. On July 26, 2024, he released a new suite he wrote about his experiences called A Suite Life. “I just wanted to write some songs when I got home that expressed what this whole journey has been like,” Berkley said.
The work is presented in three sections. The first – titled “Today After Tomorrow” – Berkley described as “my way of saying what the future looked like back then.”
The second section – “Wired” – is a frenetic piece inspired by the surgery itself. “I wrote that immediately after I got back,” he recalled.
The suite closes with “All Will Be Well,” which Berkley said was inspired by a poem that a chaplain gave him the night before his surgery. “That became a life preserver for me. I just kept repeating it over and over,” explained Berkley.
Joey Berkley estimated he’s about 65-70% recovered from focal hand dystonia, and his rehabilitation is ongoing. “One thing I lost was my muscle memory,” which he explained was especially important for a jazz musician. “Playing involves being spontaneous and trying to speak a language. So I find myself kind of ‘stuttering’ at times.”
Berkley is sanguine about the fact that he’s part of an experimental study – and the future is not certain.
“It's been almost three years, and in brain-surgery world, that's like nothing, you know? That's a minute,” he said. “It does take time for the neuroplasticity to take place. So I'm thinking that it only gets better from here.”
Ally Schweitzer edited the audio version of this story.
Copyright 2024 NPR