In this episode, Dr. Audrey Nath talks with musician Billy McLaughlin about his focal dystonia diagnosis and its effect on his ability to play the guitar. McLaughlin shares his journey to diagnosis and the technique he developed that still allows him to play music. Then Dr. Nath is joined by Dr. Alexander Pantelyat, co-founder and co-director at Johns Hopkins Center for Music & Medicine. Dr. Pantelyat  shares his knowledge of movement disorders and highlights the ways that the condition specifically affects musicians.

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Episode Transcript

Dr. Nath:
Welcome back to the Brain & Life podcast from The American Academy of Neurology. Hello, Daniel.

Dr. Correa:
Hi, Audrey. How are you doing?

Dr. Nath:
Good. You know, to introduce our guest, I have a question for you to see if you've ever been in a similar situation as the person I spoke with. I know you run, and I've seen it on your social media. Have you ever had an injury that's kept you from doing what you want to do, and been super frustrating?

Dr. Correa:
Totally. I mean, I started running to keep up with the dumplings I eat. No aspiration for speed, or anything like that. I enjoy just getting outside in the weather. Last year, because I was enjoying it, I added to my goals this idea of doing a marathon, but then along the way I got an Achilles tendonitis, or inflammation in my Achilles tendon, and-

Dr. Nath:
Oh, ouch.

Dr. Correa:
It just wasn't going away with rest, so I had to defer-

Dr. Nath:
So, essentially, you went through something where this injury totally derailed your plans ... essentially. And was super annoying.

Dr. Correa:
Yes. Lower stake plans.

Dr. Nath:
Yes. Yes. So, I spoke with musician Billy McLaughlin. Super nice guy, and he is a guitarist and a composer. Essentially, he experienced focal dystonia that stopped his ability to use his fingers to play the guitar, and had to come up with a whole new way of playing the guitar. If y'all can look on YouTube, it's really cool. Basically he tells us all about the frustrations and the difficulties of getting the diagnosis, and how he's overcome it. We speak with a physician who works extensively with musician's focal dystonia.

Dr. Correa:
Yeah. Some people have these repetitive actions that are so key to their lifestyle, and sometimes even their livelihood, like musicians. There are some runners out there that has something called a runner's dystonia, so wow.

Dr. Nath:
Some athletes. Apparently some dancers as well. Yeah. It's something that we wanted to bring some awareness to, because you might think, "Oh, maybe it's my finger. Maybe there's a muscle issue," but there is a possibility of there being a brain issue, and we want everyone to know about this.

Dr. Correa:
I'm looking forward to his insights, and his experience dealing with it, and moving on.

Dr. Nath:
Today, we are joined by Billy McLaughlin, who is a guitarist and composer. He's toured all around the world. He's won an Emmy. He's known for his really innovative ways of playing the guitar. We could talk all day about his techniques in guitar amplification and his composition process. I mean, I know I could talk about that all day, but there's another aspect to his story that's really incredible.
Back in the 90s, Billy started to have this mysterious, at least mysterious at the time, problem with his right hand. He'll tell us about this in his own words, but basically it wasn't working right, which is kind of a big problem if you're a guitarist. He was eventually diagnosed with a neuromuscular condition called focal dystonia, which would be a musician's worst nightmare. He kept on composing music, and then incredibly, or maybe just stubbornly, he was really determined to find a way to relearn to play the guitar that maximized the use of his left hand.
Guys, this is actually totally worth watching a video on, going on YouTube, and searching Billy McLaughlin to see how he does this. He uses his hand in this way to play the frets and pluck the strings that maximizes the use of his left hand, but still also uses what he can of his right hand. As a musician and a neurologist, I think this is really fascinating. Welcome to the Brain & Life Podcast, Billy McLaughlin.

Billy McLaughlin:
Thanks for having me. It is exciting to talk about the way the brain works when you're playing music.

Dr. Nath:
Absolutely.

Billy McLaughlin:
The idea that you have to play and project emotion, you can't be stuck in your conscious mind. You have to play the music from a place where you're not thinking about your fingers. You're just hearing the music and letting it come out. People should know that I've always played with bands, but where this really affected me was when I was playing solo concerts. If you play a solo concert, even a little kid can hear when something goes wrong, and there's nowhere to hide. It really does point out the miraculous complexity of the human mind, and the connection with your muscles.

Dr. Nath:
Like what we take for granted. Right?

Billy McLaughlin:
Yeah, exactly.

Dr. Nath:
I have so many questions, but first off just a mechanical question, because guitar is not my instrument at all. Just in case anyone out there is just as clueless as I am about how the guitar works, normally when someone is playing the guitar, one hand is playing the frets and one hand is strumming. Which hand is which?

Billy McLaughlin:
Well, we live in an ambidextrous world. I was called a right-handed guitar player because I was holding the pick with my right hand.

Dr. Nath:
Got it. Thank you.

Billy McLaughlin:
And my left hand up on the frets. That's doing all the fancy bending and the fretting of the notes, was my left hand. It's counter intuitive. Right? My focal dystonia is actually in my left hand. I'm trying to play this music, and my left hand up on the frets. Unexplainably, I started missing notes that I didn't even have to think about this. It was just so automatic. It was bewildering to me when it first started happening. An interesting thing about dystonia is that it's not well recognized at the clinical level. There's not a whole big section during med school about dystonia, or at least there wasn't.

Dr. Nath:
Absolutely. Yeah.

Billy McLaughlin:
Right. Not that much. Any time something goes wrong with your hand, you think that the problem is in the hand. So what do you do? You go to an orthopedic person, and you say, "Let's take pictures. Let's get an MRI." They were looking at all the tests with my hand was that it's normal.

Dr. Nath:
Right. There's no broken bones. Right?

Billy McLaughlin:
Yeah. No, broken bones.

Dr. Nath:
No muscle with strains.

Billy McLaughlin:
No carpal tunnel.

Dr. Nath:
Exactly.

Billy McLaughlin:
No pain, by the way. That's another interesting factor with focal dystonia is there typically is no pain involved. What was happening was my pinky finger and third finger were curling under the neck, and I need all four of those fingers.

Dr. Nath:
Oh, yeah. That's a problem.

Billy McLaughlin:
Right? I need all four of those-

Dr. Nath:
Yeah.

Billy McLaughlin:
To play these pieces, and I was losing. By the way, the symptoms of focal dystonia, regardless of your instrument, tend to highlight the ring finger and pinky finger, whether it's piano-

Dr. Nath:
That's so interesting.

Billy McLaughlin:
Or oboe. Of course, I was kind of isolated. I didn't know what was wrong. The doctors kept saying, "Billy, there's nothing wrong with your hand. We think your problem is between your ears."

Dr. Nath:
Which in a sense was true, but maybe not in the way they were thinking it.

Billy McLaughlin:
Correct. They were implying that I had stage fright. What's interesting about that, Dr. Nath, is that I am so at home. I feel so lucky to have spent as much time sharing music with audiences, but you hear that enough times. Many of the listeners today remember times when they've gone to the doctor. They know something's wrong, but the doctor can't see it.

Dr. Nath:
Yeah, absolutely.

Billy McLaughlin:
After enough times of the doctor saying, "Billy, we think you need psychological support," which is a nice way of saying, "Billy, we think you're crazy." You know?

Dr. Nath:
Yeah, it is.

Billy McLaughlin:
I was driving home one day, and I said, "Maybe I am crazy," because I didn't know about this dystonia thing. I went through three years looking at acupuncture, change of diet ... different massage, Rolfing. All these different things-

Dr. Nath:
I don't even know what that is.

Billy McLaughlin:
Well, it's a form of massage.

Dr. Nath:
Okay.

Billy McLaughlin:
Yeah. Nothing helped. Finally, another musician who had heard of this suggested that, "Billy, it's time to look. The symptoms are in your hand, but maybe the problem is somewhere else." That scared me to death.

Dr. Nath:
That's pretty insightful of your friend, by the way.

Billy McLaughlin:
Yeah.

Dr. Nath:
That's quite insightful. Yeah.

Billy McLaughlin:
Unfortunately, they were aware of a couple other musicians that this had happened to, and they knew what dystonia was. I had to get courageous, I guess. I didn't want to go to a neurologist. That's scary to me. I don't want to find out-

Dr. Nath:
It's cool. Nobody does.

Billy McLaughlin:
Well, I don't want to find out that I have a brain tumor or something.

Dr. Nath:
Sure. Yeah.

Billy McLaughlin:
Here I am, a young single dad playing guitar for a living, and something's going wrong. It was obvious. Like I said, even little kids could tell, "Something's wrong with Billy." Luckily, in Minneapolis and Saint Paul, which is where I live, there is a musicians' clinic. There was a fantastic neurologist there. After all these years of not knowing what was wrong, I brought my guitar with me. She said, "Play for me." In five seconds, she knew what was wrong. She said, "Billy, you have classic textbook focal dystonia."

Dr. Nath:
Wow, after years.

Billy McLaughlin:
Initially, I was overjoyed. I was like, "See?"

Dr. Nath:
Yeah. It's validating. Yeah.

Billy McLaughlin:
Very validating, but she quickly added the information that, "We don't really have effective therapeutic protocols for you. There are a couple that we can try, but, Billy, you really need to think about what you're going to do with the rest of your life, because in my experience, diagnosing many orchestral," ... Again, the agility that the music brings out, the agility needed to play the music, is a very high level. If you do start to have some slurring in your brain, in the area that controls my fingers, which is actually what was going on, she said, "It's really hard to undo it, and we don't understand how some players, over decades, they might remap in the brain." That hasn't happened for me yet. My dystonia is awful. There's no other way to say it. It's an awful thing to deal with. I had to kind of shift and start to think about, "Well, maybe I will play again. What would that look like?"

Dr. Nath:
There's no blueprint for that. I've never seen anyone play like you play, so you had to invent that.

Billy McLaughlin:
Well, what's interesting, if you think about on piano, the skillset is very similar from one hand to the next.

Dr. Nath:
Exactly. Yes. Yes.

Billy McLaughlin:
On guitar, that's not true. On violin, that's not true.

Dr. Nath:
Exactly.

Billy McLaughlin:
Well, first I went into denial. I said, "She can't be right. I'm going to get a second opinion." I went to Mayo and did a full workup. They were like, "Knock, knock. Billy, she was right. You have focal hand dystonia."

Dr. Nath:
Still recommend second opinions, though. That's a good idea.

Billy McLaughlin:
Yeah. Yeah. It delayed things for a little bit, but they said, "You got an excellent diagnosis." It was Dr. Jeanine Spear, who's now retired, from Sister Kenny Musicians' Clinic in Minneapolis. Fantastic neurologist. The fact that I was a little bit afraid to go to a neurologist is part of my story, because it delayed my eventual confrontation with what was happening, and I don't think that was helpful. If anyone is listening, and you can't find an orthopedic answer, we really do have to look at the brain for movement disorders. Right?

Dr. Nath:
Absolutely.

Billy McLaughlin:
There are so many different forms of dystonia. Mine is in my hand, which is devastating. I joke with a friend of mine who has vocal chord dystonia, because he's a singer.

Dr. Nath:
Yeah. Exactly.

Billy McLaughlin:
It's kind of a brutal thing, right?

Dr. Nath:
Yeah.

Billy McLaughlin:
That it would affect a singer's vocal chords. We tease each other. I said, "Hey. I'm not a very good singer. I'll trade my dystonia for yours." But you can't. Right?

Dr. Nath:
There's something about that, though. It does tend to affect that limb, or that part of the body, that is used more. I don't think we completely understand why, but that does seem to be a thing.

Billy McLaughlin:
I would agree. My take on it, and this is just a guitar player talking-

Dr. Nath:
Go for it.

Billy McLaughlin:
Is that had I not been playing complicated music I would never have noticed.

Dr. Nath:
Yeah, probably.

Billy McLaughlin:
Okay?

Dr. Nath:
Most people with their left hands aren't trying stuff like that. Right?

Billy McLaughlin:
Correct. Growing up, I never gave much thought about neurology. I was just like, "I want to play rock and roll, man." You know?

Dr. Nath:
Yeah.

Billy McLaughlin:
Here, the ability to do the things that you love to do are highly influenced by the health and the functionality of your brain. Let's remember, the neurosystem goes all the way to your pinky toes, people.

Dr. Nath:
That's right.

Billy McLaughlin:
It's not just what's up top. To lose control of a couple of fingers, for a guitar player, that's brutal. People do ask me that. I will point this out. They say, "Billy, is it only when you're playing guitar?" Initially, yes, it was only when I played guitar, which is again why they'd think, "He must be going psycho."

Dr. Nath:
I see, because the situation of it.

Billy McLaughlin:
However, when I go to keyboard and type, boom. Those fingers curl up. If I'm playing an actual piano, they curl up then too. My kids think I'm really dorky because when I type, my left hand, I only use my thumb and index, because the other three fingers don't want to cooperate.

Dr. Nath:
Don't work. Okay. That's not how you used to type?

Billy McLaughlin:
No. No. It's not how I used to play guitar either.

Dr. Nath:
How was it? Because you talked about how when you're a composer and a musician, the whole idea is that you want to kind of get out of your body, and not be thinking of the mechanics, and just going with what you hear in your mind. You know?

Billy McLaughlin:
Mm-hmm.

Dr. Nath:
You came up with a new way to play. Did you have to adapt the music you were writing to the new way you were playing, or did you have to kind of have new music that you dreamed of that would match what you could do physically? I'm just curious.

Billy McLaughlin:
Well, my career really got a jumpstart because I had started this unusual way of playing with both hands on the neck when I was healthy, as a right-handed player.

Dr. Nath:
Okay.

Billy McLaughlin:
Thank goodness I had developed enough repertoire that people watched me play, and said, "Wow, he's really doing something different." When it came to starting over as a left-handed guitarist, the most natural repertoire was this unusual tapping style on the neck.

Dr. Nath:
That's really fortuitous that you had that. Jeez.

Billy McLaughlin:
It is. Early on, if you can imagine, just to get the skillset together, what I did was I went back and relearned some of the pieces, converting each note from one hand to the other. I found some success, and it started to happen. Then I started to write new music.

Dr. Nath:
Got it.

Billy McLaughlin:
I found myself, if I was dreaming that I was playing the guitar, I was dreaming that I was playing left-handed.

Dr. Nath:
In the new way?

Billy McLaughlin:
Yes, in the unusual style.

Dr. Nath:
Yeah. The dreams have to change too. I'm not even kidding. Yeah. That makes sense.

Billy McLaughlin:
Right. Yeah. Yeah. It took quite a long time. Everyone's curious, "How long did it take for you to go from being a right-handed guitar player to a left-handed guitar player?" The honest truth is it took longer than it should have, because there was anxiety and frustration trying to relearn, in my case. It's not unusual for focal dystonia to start showing itself in your late 30s. I thought, "Wow. I picked a pretty tough profession to make a living in, and I've got it going. Now, all of a sudden, my brain craps out." You know?

Dr. Nath:
Yeah. Late 30s. Right at someone's prime, basically.

Billy McLaughlin:
I guess if dystonia has changed the way I compose, it just means that extra notes don't matter to me anymore. You play music. You know what I'm talking about.

Dr. Nath:
Yeah.

Billy McLaughlin:
The ornamenting isn't as important as expressing the main melody. That is definitely a side effect. I write things that have a more simple elegance to them than bashing out a million notes. You know?

Dr. Nath:
Sure.

Billy McLaughlin:
Which guitar players love to do. Right?

Dr. Nath:
Yeah. Sure. It's fun. Right?

Billy McLaughlin:
Yeah.

Dr. Nath:
Harpists too. Right? Yeah. I mean, that's so interesting to me. Yeah, you're right. It's a brain problem where there's kind of a scrambling, or going haywire, that then affects the hand. Then your adaptation to it will then change your brain, but then even the higher parts of your brain and creativity have changed as well, which is just kind of fascinating, in terms of that entire circuit.

Billy McLaughlin:
Right. The creative process is pretty mysterious. Some people go through spurts of being super creative, and then they have a little time off. I certainly had time off, because part of my fun creative process is to involve the instrument and the different things that guitar can do that piano can't, or that a saxophone can't. It is very idiomatic to the instrument, so to get a functioning skillset back was the doorway for me to start to write music again. I'll say this. The notion that plasticity of the brain is over when you turn 35-

Dr. Nath:
That's not true.

Billy McLaughlin:
It was thought that we lose plasticity, but I haven't experienced that at all. That should be an encouragement to people who feel like, "Well, why would I relearn the guitar at the age of 40?" Well, it's because you've got the rest of your life to play, man.

Dr. Nath:
To what Billy is speaking about, this idea of brain plasticity in babies and in little kids, because so much of the brain is still in the process of wiring, and in the process of what we call pruning, which is where connections that aren't so "necessary" are kind of taken away, little kids and little babies can often do really incredible rewiring of the brain. Let's say if a little baby has a stroke or something like that, sometimes we'll look later and see, "Oh my goodness. Part of your brain must've stroked out when you were a baby," and we wouldn't even know. When you do functional MRI studies, or MEG studies, things that look at activity in the brain, you can see where it went. It's fascinating. It's thought that grown ups don't do that as much, but there is some. It is worth maximizing. If it were you, or me, or anybody listening, it's absolutely worth it to try to use what plasticity is there to work in your favor.

Billy McLaughlin:
Right.

Dr. Nath:
I just want to highlight that for sure. For anyone listening who may be dealing with a new deficit, who is a grown up, that there may be some plasticity to work with. On the composition side of it, it just reminds me. I guess there's you, and then there's Sergey Prokofiev who wrote the left-hand concerto for piano for his buddy that lost his right hand in a war, or something like that. There is kind of that idea of also writing for somebody with a different ability, and just keeping everyone in mind. You did that for yourself.

Billy McLaughlin:
Sure.

Dr. Nath:
It's kind of interesting that people can do that for each other, too.

Billy McLaughlin:
It's a community. If you're a person listening today who is newly diagnosed with a condition that you've heard of ... I never heard. I thought dystonia was a country. The interesting thing is, once you've got good information, again, at the clinical level, to finally get a solid diagnosis, and to see improvement in that area for others over the last 20 years that I've been involved with the dystonia community is very, very encouraging. Once you get a diagnosis of something that, again, maybe you've never heard of, you've got to look and find the community that is paying attention. Particularly, in my mind, within the neurologic community. There are so many different conditions.
If you have it, if you've just found out that you've got it, chances are there's other people. Finding that community is one of the things. The American Brain Foundation and the AAN are doing such a great job with this type of a podcast to encourage people to look for community. Even though it may be a very specific community, it helped me a whole lot to meet other people that had dystonia in their neck, cervical dystonia, or they had it in their vocal chords, or they had it in another limb, or they had generalized dystonia, which oftentimes looks like cerebral palsy.

Dr. Nath:
That's right. That's right.

Billy McLaughlin:
To find that community, I think, was a major help for me in charting a new course and not feeling alone.

Dr. Nath:
Well, thank you so much for joining us today on the podcast.

Billy McLaughlin:
Thanks, everybody for listening, and thank you for having me.

Dr. Nath:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting BrainAndLife.org, where you can learn about neurology every day, powered by trusted neurologists ... To learn more about dystonia, and specifically focal dystonia in musicians, we have with us Dr. Alexander Pantelyat. He's a neurologist specializing in movement disorders, who is an assistant professor at Hopkins. He founded The Music and Medicine Center there, which I think is amazing. He studies music-based rehabilitation of neurodegenerative diseases, and sees patients with conditions including dystonia. Welcome to the podcast.

Dr. Pantelyat:
Thank you so much for having me, Audrey.

Dr. Nath:
So, tell me. First off, I don't meet a lot of neurologists that have music and music-based therapy as a big part of their practice, so I just want to start with that. First off, how did that happen?

Dr. Pantelyat:
Well, to put a plug in, I hope that that changes over time as more and more neurologists will adopt this. The short story about how this happened is that playing the violin has been a big part of my life since I was seven. I think it's likely what I'd be doing professionally if I weren't in medicine. As I tell my patients now, when I talk about this for their own sake, I hope I'm a much better physician now than I am a musician. Nevertheless, music remains a very big part of my life.
When I was finishing my training in movement disorders, neurology, there was a group of patients with Parkinson's disease who attended an annual retreat that was organized by us at the University of Pennsylvania. This one involved group drumming with a West African drumming leader, an ensemble player. After just 45 minutes of this group drumming class, the patients came to us and said that various aspects of their Parkinson's disease, symptoms like tremor, for some people even walking itself, freezing of gait, and overall sense of wellbeing were all better.

Dr. Nath:
From drumming.

Dr. Pantelyat:
After 45 minutes of a drumming session.

Dr. Nath:
That's so interesting. Okay.

Dr. Pantelyat:
At that point, I designed the first study in this area. I've since then developed a study called DRUM-PD, where we showed that you can demonstrate quality of life improvements in people with Parkinson's disease compared to a control group of people with Parkinson's disease who didn't drum. Drumming seemed to improve quality of life for a pre-defined period of time, six weeks, as long as they came. When you reevaluate the patient six weeks later, after they stop drumming, they go back to where they were before, indicating that this needs to be an ongoing process to glean the benefits.
When I interviewed for my position at Hopkins, I was asked a question by my Chairman of Neurology, Dr. McArthur, "What would your ideal position be?" Having done this DRUM-PD study, I'd already whet my appetite in these music-based interventions, and knew that I wanted to do something with music as part of my career. I said, "I'd love to combine my passion for music and medicine." Then, fast forwarding about a year and a half later, The Center for Music and Medicine at Johns Hopkins was founded, which I now direct. That's the sort of short story.

Dr. Nath:
Do you run across many musicians like Billy McLaughlin, who we spoke with, who are doing really well and experts in their instrument, who then experience dystonia?

Dr. Pantelyat:
Yes, absolutely. This is the flip side of the coin. The motto for our Center for Music and Medicine is music as medicine, medicine for musicians. I said a little bit about the DRUM-PD study and how that's an example of the music-based interventions, or music therapy, used for neurodegenerative diseases, neurological disorders of other types, and non-neurological disorders. Another important part of what I do, my niche as a movement disorders specialist, is in musician's dystonia, so musicians who experience these abnormal involuntary movements, loss of coordination and control, which has to be extremely refined for a serious or professional musician like Billy McLaughlin. That is something that I see as well.
Thankfully, it's not a very common disorder. Although it's hard for us to get a good sense of the incidents and prevalence, because there's still quite a bit of stigma among the greater community of musicians about what musician's dystonia really means. The rough estimates are between one and two percent of professional musicians will develop musician's dystonia at some point in their career. Unfortunately for most of them, that will either curtail their career or lead to significant changes in the way that they play their instrument.

Dr. Nath:
Absolutely. Billy McLaughlin came up with a whole new way to play the guitar with plucking and fretting kind of at the same time. It's really cool to watch. For our audience just to kind of understand, when we talk about musician's dystonia, they may have trouble with one or both hands, but the issue is not with the muscles, though they might think so initially, or other people might think so initially. It's actually in the brain. What do we know about the mechanism about how this works?

Dr. Pantelyat:
The short answer is there's a lot more we need to learn. To expand upon that a little bit, dystonia is broadly defined as abnormal muscle tone or muscle tension that can often, but not always, lead to abnormal positions of the limbs, depending on the muscle involved, or abnormal voice production in the case of singers and spasmodic dystonia. Abnormal embouchure in woodwind players, brass instrument players. Any muscle in the body, in theory, can be affected with this abnormal tone. You can have visible obvious twisting of the limb involved, or the muscles involved, but it doesn't necessarily have to be the case.
What seems to be ubiquitous across the board for musicians is that they lose their ability to finally control and coordinate the limb in question because of this abnormal muscle tone. From what we know, this dystonia that is in musicians, as well as other types of dystonia, result from abnormal integration of sensory and motor inputs. I should say sensory inputs and motor outputs at the level of the cortex, but also abnormal integration of electrical signals between the cortex, the outer part of the brain, and the deeper sub-cortical parts of the brain, namely the basal ganglia, which are these deep centers of the brain that help us initiate, and coordinate, and carry out planned movements. There are disconnects at multiple levels of this integrated system, this sensory motor network that needs to work in unison at this incredible level of precision, millisecond level of precision, in order for a musician, an instrumentalist, or singer to be able to do what they do.
To give you a concrete example, when I play a passage on the violin using the fingers on my left hand, I am applying a certain degree of pressure as I'm moving the fingers. My primary motor cortex is firing. Right? Very rapidly. Simultaneously, I am getting feedback from what I feel from my fingertips-

Dr. Nath:
The sensation. Yeah.

Dr. Pantelyat:
Through the sensory motor network. That feedback must be integrated with the way that my motor cortex is firing in order to make minute adjustments. If I'm out of tune, I need to quickly shift my finger. Right? Less than a millimeter in order to actually start playing in tune, or change the way that the note sounds. This is practically a real-time phenomenon. This is what we know breaks down in musician's dystonia.
Let me just say this right upfront. There are things that we can do by working together with our occupational therapists, especially those who have a background expertise in music, in order to help patients like Billy McLaughlin retrain the way they play. Often, also administer low doses of botulinum toxin to relax the muscles that have the abnormal muscle tension, muscle tone, that I mentioned, in order to help rehabilitation, retraining, go more easily.
Yes, it's not unusual for me to see a patient who starts out going to their primary care doctor, then being referred to an orthopedist for an evaluation. Nothing particular is found. They make their way often to a neuromuscular neurologist, which is closer. They often get an EMG, electromyography, or nerve conduction study, which may or may not be abnormal. If carpal tunnel syndrome, cubital tunnel syndrome, ulnar nerve entrapment are ruled out, often it's after that kind of workup that musician's dystonia gets brought up. By that time, it could be months, if not a year or longer, that the patients have these symptoms.

Dr. Nath:
I'm so glad you brought up that there are all kinds of things that we can do, because Billy talked about how devastating it was to not be able to play. He said it was just so odd that he couldn't play the things that he was thinking, because he composes and then plays. Tell me, what are kind of the first steps when you have a musician with a focal dystonia in terms of therapy, and what are your goals with that therapy? Then at what point do you start think about giving a little bit of botulinum toxin into those muscles?

Dr. Pantelyat:
Fantastic questions. You want to find a specialist, somebody who has seen other patients with musician's dystonia. Unfortunately, right now in 2022, it's no easy task. Traditionally it's been a word of mouth kind of phenomenon where, if you're lucky, a major city, like New York City, Chicago, Philadelphia, Los Angeles, might have one specialist who has this background. That's not always the case. I'm talking about musician's dystonia in particular. It has been traditionally word of mouth. Through establishing centers like ours at Johns Hopkins, we hope to improve that. There, for example, has been a clinic for musicians run by Dr. Michael Charnes through Harvard, which is a Saturday pro bono clinic, for over 30 years.

Dr. Nath:
Wow. Cool.

Dr. Pantelyat:
That exists, but many people don't hear about it. We have our clinic, the musicians' clinic that I mentioned at Peabody, and through our Center of Music and Medicine. Other clinics are being established as well. The first step, as usual, is Google, and trying to go from there. You need to find somebody who has expertise and understanding of what musicians really need. Again, that really involves a multi-disciplinary approach. Working with occupational therapy in the case of an instrumentalist with a hand or a foot dystonia, working with physical therapy, often in the case of dancers. You mentioned dance. Working with a voice coach and speech therapy in the case of singers. Ultimately, if botulinum toxin is a consideration, being referred to a movement disorders neurologist like myself. That's a multi-part process.

Dr. Nath:
What does it look like? Let's say if we have, for example, a violinist with a focal dystonia involving the left hand. I'm just curious. What would that physical therapy look like that's tailored to a violinist?

Dr. Pantelyat:
It would be highly individualized. As I mentioned, based on the natural history, the weaker or ulnar third and fourth, as we would call it in violinistic terms, but it's really pinky and ring finger, tend to be affected most. As an aside, a historical note, the reason why we think the pinky and ring finger tend to be affected more often than the other fingers is that the repertoire starting from the 19th century on for violin became very technically demanding, starting from Paganini onwards. It placed ever-increasing demands on those two fingers, which from an evolutionary perspective really were not designed to do the gymnastics that are required to play some of these weird passages. If you combined that level of demand with people who are in an extremely competitive environment and need to spend thousands of hours to gain expertise, it's not surprising that on a background of a genetic predisposition certain musicians might develop this just around the time that they're ramping their practice time, their rehearsal time, preparing for auditions for orchestras, or chamber music groups, or solo auditions for competitions. That's the typical natural history that we hear about.
What would an occupational therapist do? My colleague, Serap Bastepe-Gray, who's an occupational therapist in our Department of Physical Medicine and Rehab, and is also a guitar ensemble faculty at Peabody. She's my partner in crime. I typically ask her to evaluate a patient who's presenting with complaints that make me think, "This may be dystonia." From the very first evaluation, she carefully assesses the musician playing their instrument. There's no substitute. Can't just describe it in words. You have to see what the actual playing looks like in order to start pinpointing the problem and start to devise a retraining program. That could involve splints, certain specific devices. Often those are custom made and custom designed by the occupational therapist. I can think of several examples that are pertinent. That could involve actual change in playing technique. Again, Billy McLaughlin's example is a good one. For example, changing the fingering away from these involved fingers, the pinky and ring finger, for example, and changing the way that the string is pressed, the fingering's pressed.

Dr. Nath:
Wow. I mean, you only have four to choose from, though, in violin.

Dr. Pantelyat:
Typically, and fortunately, the dystonia tends to involve one or two fingers, so you still have a couple others to work with. Often that could be a very big help. The other aspect of things, and this is kind of unfortunate, but the reality is that the repertoire that that one is playing sometimes needs to change. Somebody is having trouble with Paganini Caprices or Paganini Violin, they might switch to a different type of repertoire that is perhaps less demanding, and is less likely to involve passages that bring out this focal task-specific dystonia, or musician's dystonia. There are several ways of retraining by working with an occupational therapist. Also, often if it's a student who is still in training to become a professional musician, we often have to work closely with the teacher to implement the retraining program.

Dr. Nath:
So this means that people are bringing their entire instruments and some music along to these doctors appointments. You don't see that every day.

Dr. Pantelyat:
Right. You don't hear it every day either, but especially interesting if you are in a busy clinic and somebody brings their tuba, or horn, or trumpet. You just start hearing these things. For me, it's definitely music to my ears. Right? No matter how severe the dystonia is.

Dr. Nath:
For anyone out there listening who might be a musician, or artist, who may be having some new symptoms suggestive of a focal dystonia, or have a colleague, or an orchestra mate that is saying things that are sounding a little suspicious, what would you want them to know as someone just kind of first starting out in the process?

Dr. Pantelyat:
For these types of symptoms, there's still no substitute to bringing them up to your primary doctor, but perhaps gently nudging or informing them that, "I'm suspecting this may be a neurological issue," in which case a referral to a neurologist on the early side of things would make a lot of sense. From there, from a general neurologist perspective, if dystonia is suspected, then a referral to a movement disorders center like ours, The Johns Hopkins Center for Music and Medicine, would be absolutely indicated.
I've had a few musicians already at this point. Again, using Google, I suspect, find our center and skip some of these steps, and say, "You know, I'm suspecting this is dystonia. Can you please evaluate me?" Of course, we make every effort to accommodate that evaluation. Again, from the get go, the way I work is I ask my colleague in occupational therapy, Dr. Bastepe-Gray, to do the evaluation in parallel with me. In fact, often what we do is a same-day evaluation of a musician so that we can talk about retraining and consider botulinum toxin simultaneously. I've found that the combination of the muscle relaxing effects of botulinum toxin can help retraining go more smoothly, but there's absolutely not a substitute for the retraining itself. In other words, the retraining is crucial, and the botulinum toxin is an additional option which may make it go easier.

Dr. Nath:
So they work together in some sort of neat way that we might not even completely understand. That's really cool.

Dr. Pantelyat:
The retraining is working, I should say reworking, to rewire the pathways in the brain that have become crossed, to put it very generally, while the muscle relaxant effects are peripheral at the nerve muscle junction, which is where botulinum toxin works. It's sort of a one-two punch.

Dr. Nath:
Where can people find you online? Anywhere on social media that people can kind of keep in touch with what kind of research y'all are doing, and what's new?

Dr. Pantelyat:
Absolutely. JH Music Medicine, Center for Music and Medicine. Look us up on Twitter, on Facebook, Instagram, and just Google us, Johns Hopkins Center for Music and Medicine.

Dr. Nath:
Wonderful. Thank you so much for joining us today.

Dr. Pantelyat:
My pleasure. Thanks so much for having me, Audrey.

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