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.”
Berkley learned of an experimental procedure at the National Institutes of Health in Bethesda, Md., 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,” Ehrlich said. “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, 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,” he said.
Berkley had his surgery in March 2021. After a lot of rehab, he regained enough control over his left hand to begin to record again. On Friday, 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,” he 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,” he explained.
Berkley estimated he’s about 65%-70% recovered from his 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.
Transcript
(SOUNDBITE OF THE JOEY BERKLEY BAND'S "GOOD-BYE")
A MARTÍNEZ, HOST:
Saxophonist Joey Berkley was living his dream. He was playing jazz in New York City, but he noticed his left hand was not cooperating. It got worse and worse.
JOEY BERKLEY: As soon as I picked my horn up and touched - literally just touched my horn, my hands would twist into, like, pretzel shapes, and everyone's looking at me like, what's going on?
MARTÍNEZ: Berkley was experiencing focal dystonia, a movement disorder marked by involuntary muscle contractions. Five years ago, his symptoms became unbearable.
BERKLEY: I kind of kept it hidden for a while and just kind of, you know, muscled through it - like, pushing down on the keys, but crushing them; like, not just placing my finger down on the fingering. I would go way past that and just crush the key, and my fingers would literally be bleeding afterwards. I just basically told the truth and how I had to quit playing.
MARTÍNEZ: Joey Berkley's dream was all but over. Focal dystonia robs many people of their careers, and musicians are especially susceptible. Dr. Debra Ehrlich is a neurologist specializing in movement disorders at NIH, the National Institutes of Health. She says focal dystonia patients can receive temporary relief.
DEBRA EHRLICH: The primary treatment that people will try is botulinum toxin - Botox.
BERKLEY: I did do that. Did it help? No. Did it hurt? Hell yeah. They injected it into my forearm, and it was a needle that had electric current, so they would move it around once it's inside until they find the right nerve, and then they'd turn up the electricity.
MARTÍNEZ: Joey Berkley wanted a more permanent and less painful solution. He learned of an experimental procedure at NIH, one that involved placing an electrode directly into his brain. The principal investigator of the study to treat focal hand dystonia was Dr. Ehrlich.
EHRLICH: You know, 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, and deep brain stimulation itself is actually using a implanted device. It needs to be surgically implanted. It consists of a battery that goes in the chest, and the battery is attached to wires.
MARTÍNEZ: Despite how invasive and potentially dangerous that sounded, Berkeley says he had no second thoughts.
BERKLEY: None at all. I mean, music is all I've ever done. The feeling of not ever being able to play again was, you know, a hundred times worse.
MARTÍNEZ: Now, you put out a video of your surgery. You actually played your horn while they were inside your skull.
BERKLEY: Absolutely. Doesn't everybody?
(SOUNDBITE OF MUSIC)
BERKLEY: They woke me up after a couple hours, and they hand me my horn, and I wasn't very coherent, but I do remember I was trying to play some songs, and it was just a very surreal moment, you know?
(SOUNDBITE OF MUSIC)
MARTÍNEZ: That was in March of 2021. It's taken a lot of rehab, but Joey Berkley regained enough control over his left hand to begin to record again.
(SOUNDBITE OF JOEY BERKLEY SONG, "ALL WILL BE WELL")
MARTÍNEZ: This is part of a new suite he wrote about his experiences. It's called "A Suite Life."
BERKLEY: I just wanted to write some songs when I got home that just kind of expressed what this whole journey's been like. The last song in the suite is entitled "All Will Be Well," which is the name of a poem that - the night before my surgery, I was visited by a lady chaplain, and she sat down with me and handed me this little poem, and that became a life preserver for me. I just kept repeating it over and over.
(SOUNDBITE OF JOEY BERKLEY SONG, "ALL WILL BE WELL")
MARTÍNEZ: The one I love, Joey, is "Wired."
BERKLEY: Yeah.
MARTÍNEZ: I mean, considering what you've gone through (laughter), to actually name a song "Wired"...
BERKLEY: Well, you got to have a sense of humor, you know.
MARTÍNEZ: That's pretty damn cool.
(SOUNDBITE OF JOEY BERKLEY'S "WIRED")
BERKLEY: I wrote that immediately after I got back, and I just thought that was a good title. I mean, I...
MARTÍNEZ: Wait a second. You wrote "Wired" immediately after you got back, so while it's fresh in your head, so to speak?
BERKLEY: Sure. Oh, yeah, definitely.
MARTÍNEZ: And that's what I love about this, Joey, because just the fact that you have a sense of humor about this, it allows us to be joyful about this, because I'll admit - so when I was going to hear your music, I expected some sadness. I expected it'd just kind of be a little downtrodden and sad - no. I mean, there's no moments like that. This is, like, joyous stuff that you've got out there.
BERKLEY: Thank you. I appreciate that. Yes. I mean, look - I mean, I'm blessed to have so many - a great support network around me, my friends, and believe me, like, when they knew about everything I did, the jokes were flying. You know, can I open up garage doors? Can I turn off the TV?
MARTÍNEZ: (Laughter).
BERKLEY: You know? You know, that's what we do. You know, we bust each other's chops, and it was funny. I mean, it made me laugh. Still makes me laugh.
(SOUNDBITE OF JOEY BERKLEY'S "WIRED")
MARTÍNEZ: So, Joey, allow me for a second to be the skunk at the picnic - the future. I mean, after all, this is an experiment. You're part of an experiment, so no one really knows the potential of this procedure. What are your thoughts? I mean, what are you feeling about the future? I mean, are you back to 100%, and is this going to be permanent 100%?
BERKLEY: I mean, I'm probably at about 65- to 70%. One thing I lost was my muscle memory that you build up, especially as a jazz musician, when playing involves being spontaneous and, you know, trying to speak a language, so I find myself kind of stuttering at times musically. Maybe it sounds the same, but I got to work 10 times harder right now than I used to do, and I'm optimistic that that's going to only get better. Like, it's been almost three years, and in brain surgery world, that's, like, nothing. You know, that's a minute, so it does take time for the neuroplasticity to take place, so I'm thinking that it only gets better from here.
MARTÍNEZ: That's saxophonist Joey Berkley. He's written a three-part suite inspired by a search for relief from focal hand dystonia. It's called "A Suite Life." Joey, thank you so much for sharing your story, and best of luck to you.
BERKLEY: Thank you, very, very much for letting me have this opportunity.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
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