Flutist Julianna Nickel on Focal Dystonia and Brain Surgery

I first learned about flutist Julianna Nickel through a Facebook post her husband made linking to her blog. She explained there what she was about to undergo: brain surgery as part of a National Institutes of Health (NIH) study of focal dystonia. I was struck by her willingness to go to such lengths as well as her honesty in describing her experience of dystonia. I wrote to ask if she’d be willing to talk with me. She graciously agreed, and what follows is the conversation we had this past March. This is not a short story nor should it be. Julianna detailed the history of her diagnosis, what her career has looked like at various points since her diagnosis, how she learned about the NIH study and decided to become part of it, and how the study is going. But our conversation only scratches the surface of the study and of her emotional and physical journey. Check out the resources at the end to learn more. 

Angela Bilger: I think it’s safe to say that you are unique in the music world by electing to be part of this study that required brain surgery and implants. It’s a long-term commitment, to say the least.

Julianna Nickel: Yes. And I’ve just been realizing how much of a long-term commitment it is. I just had an appointment at the NIH a few days ago. I didn’t think things would be this hard this far into it. I spent a good hour talking with my doctor there, Dr. Ehrlich, because I had quite a few days of panic wondering if I should stop the study and just go back to BOTOX. It’s still very much a process. I’m learning more every visit, and I think it would be almost impossible to explain to somebody, if they elected to do this, exactly what to expect. Part of the reason I’ve posted on my blog is so that I can remember everything.

AB: I’ve enjoyed reading your blog. Following your process through this is fascinating. But first I’d be curious to hear more about the onset of the focal dystonia. When did you realize there was a problem?

JN: For me it was completely out of the blue, which is not most people’s experience. It was 2003, a year before my daughter was born. One weekend, we were moving into a house from an apartment, and all of a sudden I couldn’t play. I went from playing to not playing. For a few days, I just kind of hoped it was something I did in the move, or something odd. Focal dystonia wasn’t known very well, and I didn’t know it existed, so I assumed it was something odd. I definitely had feelings of panic right away, but there’s nothing you can do on a Saturday, and I think my husband left within a few days for a three-week tour. So, while I was initially trying to figure out what the heck was going on, he was gone. And I’m not sure we had cell phones yet. He was overseas, so we weren’t in touch at all. 

AB: On your blog you mention that after your daughter was born, you picked up the flute again hoping the dystonia had gone away, but it hadn’t. Is that right?

JN: Yes, but I had seen many people before I was pregnant. I had seen at least four or five neurologists in Dallas, because it takes a while to find the right doctors. The first one I saw told me I was probably just sleeping on my arm wrong. I hoped he was right, but it didn’t seem that easy. The second one I saw did say the word dystonia, but he made it sound like no big deal and his advice was to just move on. By that time, I had heard of dystonia from my flute maker and knew it wasn’t good, so when this doctor said I was looking at the glass half empty, I was very angry with him. Very angry. He also did some painful tests that no one else had done. He did get the diagnosis right, but he was the wrong person to see in that he didn’t give any information. 

So, that’s the hard part—searching for the right neurologist who has actual knowledge of musicians. I even saw one doctor in Houston who diagnosed dystonia all the time, but she didn’t mention that a few miles away there was a doctor who used BOTOX to treat it. She just confirmed the diagnosis. My suspicion is that a lot of people don’t like BOTOX, so they don’t share that information. There was not a lot of sharing of information or advice on what to do. So, I’d seen all the doctors prior to the pregnancy except for Dr. Jankovic in Houston, who would become my main doctor while I lived in Texas. 

During my pregnancy, I just kind of put the flute away anyway because I was really sick from the pregnancy. I didn’t care very much about anything else. I should have been pushier about seeing people while pregnant or breastfeeding, because neither affects diagnosis or treatment of dystonia, but I just let everything sit. Finally, when my daughter was nine or ten months old, I went to see Dr. Jankovic, one of the leading treaters of musicians’ focal dystonia. He did BOTOX that day and the next day I could play.

AB: So, it was a long process just to find the right people. 

“What I wanted out of a treatment was a cure . . .”

JN: Yes. You can find out your condition, but there are tests that can be done to rule out other conditions. People with nerve problems or muscle strain are often misdiagnosed as having focal dystonia. They could have done some ulnar nerve tests, for instance. But I think my dystonia is a little atypical in that my hand didn’t cramp or hurt. It would just move. Also, I was female and younger, and it’s more common for males and for those who are older. It’s still in the rare disease category. Musicians just hear about focal dystonia because it’s more prevalent in our field. 

So, Dr. Jankovic was the one who first treated it, but it wasn’t the best form of BOTOX treatment for me. He felt around with his finger to see where the muscle was reacting in the forearm and injected a lot of BOTOX. Frequently, it would be too much and my hand would be too weak to even play. I remember not being able to pick up my second child with my left arm because I couldn’t feel if I was holding him or not. But the doctor didn’t worry about this at all. He would say to give it a couple weeks—and he was right. It would be great for a long time after the major weakness subsided. I could go six to nine months with no more shots, but I would be worrying about an upcoming performance because I couldn’t practice for it if the treatment made my hand initially too weak to play. But it worked overall really well, so he’s who I stayed with while we lived in Dallas. On treatment days, I would drive to the airport, fly to Houston, stay there for a few hours, then fly back to Dallas the same day. 

Luckily, my insurance covered it. They were very responsive. They covered my appointments and services with him because I proved that he was the only one who was treating musicians with BOTOX in Texas. It’s changing a little now. Insurance companies are not being as polite about BOTOX for musicians. So, if a musician wants to get BOTOX, they have be prepared to stay on the phone until they get a yes.

AB: I know there are people out there for brass players who specialize in retraining, and there’s someone in Canada who does all kinds of dystonia retraining. Is that anything you ever pursued?

JN: No, not actively. I looked them all up. I knew about many of them. I know one brass player in Dallas who thought he had dystonia and went to see someone like this, but my suspicion is that he didn’t have embouchure dystonia to begin with. 

I don’t actually like the direction that the retraining is going, but this is very much my personal feeling. What I wanted out of a treatment was a cure, and what I see from the retraining is that it takes an excessive amount of time—years, literally. And what I’m seeing is that people are getting back to being able to play the middle of their instrument—by that I mean whatever is the easy octave or the easier combinations. Maybe they can put their hands back on the instrument. But what I always ask people is, are you back onstage? And most, if not all, are not. What I’m looking to play is the entire flute repertoire—all the possible fingering combinations at any speed. Some people have told me they spend eight years retraining and they’re back to sixty percent. If that works for people, that’s fine, but that wasn’t what I wanted.

“. . . the doctors I’ve worked with know focal dystonia is an actual condition like Parkinson’s or Alzheimer’s.”

I find myself very closed to retraining because how you get focal dystonia, and why, is often presented in a very negative light. The retraining people often have what my doctors consider to be the old view of why you get dystonia. It doesn’t mean retraining can’t help at all, but sometimes they can make it sound like it’s the musician’s fault. But the doctors I’ve worked with know focal dystonia is an actual condition like Parkinson’s or Alzheimer’s. One theory for the cause of focal dystonia that my neurologist at the NIH (Dr. Ehrlich) mentioned is that the brain hasn’t quite caught up to all that we’re asking from it now. Some people’s brains just can’t handle the repetitive nature and highly demanding skill required for playing an instrument.

People often asked me if I was over-practicing. I didn’t practice four hours a day ever until I got to my junior year of college. I might practice six hours a day with an audition coming up, but most of the time I didn’t come even close to that amount of practicing. When I talked to Dr. Erlich about it, she told me a theory that the later you start music, the more in danger you are of getting dystonia. She asked at what age I started. I was eleven, which lines up with this theory. She said that my son, who started piano at age five, is probably protected. 

AB: Wow. The brain just adjusts to the demands more easily at a younger age? 

JN: Maybe. So, the doctors are coming at it from a very different angle than the retraining people who have not spent as much time with the brain and its processes and why it’s behaving the way it is. They are two different trains of thought. What I’m getting is that the medical side is more accepting of the retraining ideas, and the retraining is not accepting of the medical. 

I was told by one person that people with focal dystonia were like addicts—that we have the same brain as an addict. When I told my doctors about that, they said no—not related. So, there’s a lot of misinformation out there.

AB: Wouldn’t that take a load off people if they knew the medical community does not accept this as something that is their fault for having developed. Because that’s a lot to carry. 

JN: Well, there are a lot of doctors that do still have that view. In talking with people from other countries, their doctors are still in that mode, but the ones I’ve been made aware of are not the movement disorder neurologists. Not everyone has access to a doctor with that level of specialization, and even when you can find a one, they don’t always have the expertise for musicians’ needs. 

Another reason people go with the retraining rather than the doctors is that they want to get better on their own or through natural methods. Some see medical doctors as the enemy, almost, and think they have an agenda. I have enough neurologists in my life, especially now, to know that the doctors do not have an agenda to try to get musicians to do surgery or BOTOX. The doctors really do find musicians unique and interesting, and they want to be as helpful as possible. It’s been the biggest surprise to me how available to musicians they are. 

After I had BOTOX and received the ability to work again, I didn’t see that retraining would work any better. When I moved to DC and found a new neurologist (who happened to have worked with Leon Fleischer), I asked him what more I could do to improve my playing. He said I could try reading Braille and said it would take something like a couple hours a day. And I said, well, what could I expect as a result? He said it could be ten-to-twenty percent better over a certain number of years and that it might not work. 

Always through this journey, from the first neurologist to now, I’ve been looking for other options. I looked at putting extra keys on my flute, and that made it worse. Sometimes they say instrument changes can cause it. I had just changed instruments a year or so before getting focal dystonia, so I went back to the type of flute I had been playing. 

So, the retraining, for me, sounds off personal alarms. I’m happy if people find that it works for them. Every story is different. But I have not found anyone who played on the professional level who returned to their original level of playing that way. And for some people, the definition of success is just different. I know several musicians in major symphony orchestras who have retired early because of focal dystonia. In my mind, if retraining worked, they would have done it. If they could have returned to their job they would have, and they didn’t go that path. 

BOTOX got me to where I could play, though I couldn’t take an orchestral audition and do well. There were just little things that weren’t possible, and the pressure of the audition can worsen the condition. But in my regular playing life, while BOTOX was working, my students couldn’t tell. Audiences couldn’t tell. I could tell. There were pieces I had to modify because I couldn’t do this trill or that technical passage. Also, I wouldn’t pick a recital piece with certain things in it. 

I did find a big pushback against BOTOX. People think badly about it. I don’t quite get that.

AB: Why do you think that is?

JN: Well, when I’ve asked them, people have said they’d like to use natural methods, or that BOTOX is a poison. (That’s when I tend to point out that penicillin is a poison as well.) Some people say they can’t afford it. Every two years insurance denies my BOTOX and I have to stay on the phone for literally forty-eight hours. I just say I’m not hanging up until they approve it. So far, I’ve won, knock on wood. But also, when you think about it, it’s not horribly expensive. You can work it out. If every appointment is $1600 and you go maybe four times a year, and some people go once a year . . . Why not use your flexible spending account, or negotiate a lower rate with the office, or—is your career worth it to spend that amount of money? Retraining is very expensive, too. So, there are different ways around the cost. I don’t want to pay for it either—that’s why I keep fighting insurance to cover my BOTOX. But when I look at the bills, it’s not like a fifty-thousand-dollar operation.  

AB: One question I’d like to ask you before we get to the study: even in the relatively short time that I’ve been dealing with my injury, which is coming on two years now, and even with the progress I’m making, there have been days I’ve wondered at what point I cut my losses and find something else to do. And I think that must be multiplied exponentially for someone with dystonia because it’s such a long-term thing. How did you navigate that question?

JN: Dystonia is permanent. There are cases of spontaneous recovery; those do exist—I was hoping for that! But they’re very rare. They don’t know why these recoveries occur, but the brain is a funny thing. Looking back is such a confusing thing because I stayed with being a professional musician, then was handed this treatment [BOTOX]. It worked pretty well and I was working and doing everything I wanted in Dallas. For some reason, people held my jobs for me during the period when I wasn’t playing at all and when I first received BOTOX, and my workload actually increased when I came back. Of course, it is different playing in a regional orchestra as opposed to the Cleveland Orchestra, for instance. There wasn’t as much stress, and I could really play almost anything. I could make up alternate fingerings for Star Wars if it was too fast or something, and some of these things weren’t audible anyway. I didn’t consider leaving the business after I got BOTOX because I was the happiest I’d been in music, ever. I’d considered leaving music in college, but not during that time in Dallas. BOTOX was working and I was happy and grateful for that. 

When we moved to DC, the freelancing scene was not what I hoped, and for me, the move was the wrong decision. When I visited DC prior to our move from Dallas, people would say, oh you’ll have tons of work, don’t worry about it—but it didn’t work out that way. I was principal of several regional orchestras in Texas, and you don’t just show up in a new town and immediately get those kinds of jobs. There haven’t been openings like that here. About our second year in, I realized this was not going to be easy. And teaching high school private lessons—that is not my gig. A lot of people love it and are really good at it and make entire careers around it. Being from Texas, where it’s really prevalent, I have many friends who teach high school (and younger) full-time. But I knew I didn’t want to be in music and have that as my only musical outlet.

So, when I realized my freelancing work would never be as good as it was in Texas, I wished that when I’d been diagnosed that I’d just found something else right away. To this day, I still think it probably would have been better—I think. I mean, how can you say for sure? A lot of good things have happened. My students at George Mason have been a surprise. Getting the job at Mason was a surprise. Freelancing is always unpredictable. But, the Mason job gives me wonderful work in the industry and a different type of teaching platform, and freelancing has been better all the time. I just had a great season performing.

But it’s hard to live with dystonia. You want to be in the practice room a lot, but practicing more isn’t necessarily helpful. You’re trying not be frustrated about the work you can’t get. You can’t take the audition that’s in town because you can’t, even though in the past you used to play with no problems. But then you need to be able to leave the practice room and not be that person when you’re with your kids. So, you just leave all the panic or worries you have in the practice room. 

At one point, I decided to be the best musician I could be with about an hour of practice a day. I said, I don’t have to try so hard anymore because I’m never going to be any better with more practice. I kind of limited my expectations of myself because I felt like there was no point. Sometimes I did practice more if I had a bigger performance coming up, but I kind of decided one hour would be good enough most of the time, and these limited expectations helped me stay sane. 

My kids didn’t even know I had dystonia or on what level I dealt with it, so this has been new to them too. Why would it come up over dinner, you know?

AB: It must have been a wild thing for them, and for all of you, with the surgery last summer.

JN: Yeah, it was. I thought it was going to be worse though. Clinical trials move slowly, so the whole family had a lot of time to get used to the idea of the surgery. 

At the beginning of the school year I told the teachers about the possibility of my surgery because I wanted to tell them in person rather than in an email. I had no idea how the kids would react. Would they be scared? Would they act out? But it turns out that the surgery happened a week after school got out. 

The kids did ask questions about it, and my husband James was a little bit like really? until he started going to the appointments. Once you meet the neurologist and the neurosurgeon, you start to feel like they really know what they’re doing. I know this is a really big deal to go through, but it’s hard to exaggerate just how much they know what they’re doing, and how much you get the feeling that they’re not going to screw up.

AB: So, could you tell me a little bit about the how the opportunity for being a part of this study came about and what the process was like in deciding to go that route?

JN: I had a friend from high school who I had told about my condition. At dinner during a visit to Virginia, he said he’d heard about a study at a different institution (maybe it was Johns Hopkins) and I was like, hmmm, interesting. So I went home and for some reason later, just started googling “focal dystonia hand surgery” and the NIH study showed up. I had been searching the internet for a decade about cures and studies and hadn’t seen anything, so I don’t think I would have searched at that particular time if he hadn’t mentioned the study he’d heard of. I read the criteria and I didn’t think I met it, because part of the criteria was that BOTOX had to have failed.

But, I went ahead and ordered my medical records and sent everything in, and I heard back from them. I didn’t fully understand what that first appointment was going to be like. I think that if, when you meet initially with the doctor, they get the sense that this might work, then you meet with a whole group of doctors, nurses, and others, including the head of the movement disorders department. So, I went in and met with the initial doctors, and after being in the waiting room for a while, I went in to meet with the big group. I was shocked at how many people were in the room. I heard later that it was extremely crowded because they knew this was a different study—it wasn’t always that crowded. I sat up front with the head of movement disorders. I would play the flute a little bit and explain where the focal dystonia affected me. Many in the room asked questions of him and he’d point things out. There were some who were very familiar with focal dystonia, and others who were not and were just there to observe. It was in this meeting where they would decide if they would move ahead. I didn’t realize how much I wanted to do this clinical trial until I was waiting for them to come out and let me know. I thought, oh my gosh, they could say no right now, and then it’s over and I’ll never know what could have happened. But they came out and said yes. 

They stressed that at any point I could pull out and that there was no commitment. We started the appointments that led to being approved. I did not understand then how much of a process this was. For the first five people in the study, they have to prove to the FDA that it’s a safe procedure. Safety, rather than success, is the main thing the FDA is looking for, which they’ve had to point out to me many times during this journey. And I said, but you’re going to try to get it right, right? And they said yes, but they had to keep pointing out the official version of it, so to speak. So there were a lot of tests, and in July of 2017, they thought they would be able to do the surgery in December. But they had to add more tests, make several changes to the wording of protocol with the safety board, and make sure I hadn’t had BOTOX for a certain amount of time. 

They also changed the psychological procedures for all studies, so I had to do more tests. I know there was one person that was not approved for this particular trial after the psychological testing—it’s pretty intense. I was able to take some of those results and say, look at this! I’m smart—and no depression! At least if nothing else, I had passed these psychological tests! And I had a perfect MRI which they say is very rare. Most people have little bits of damage here and there, but I didn’t have any. They had rewritten the study before I took my MRI to make sure those little bits were allowed because 95% of the population has them. But not me.

AB: Tell me about what they did in the surgery. You have implants, right?

JN: So if you talk to a Parkinson’s patient who gets this done (they’ve been doing this a long time with Parkinson’s) they put two electrodes in your brain. For focal dystonia, it’s one. They are very used to the Parkinson’s area of the brain. They can see it, visually see it, and they can tell during the surgery if it has been correctly placed and is working. They can’t see the focal dystonia part of the brain, and they can’t really know if the electrode placement has worked while in surgery. They put the electrode in the brain, and a wire is dropped from the electrode down the neck into a one-square-inch machine that’s in the chest. You can’t see it, but you can feel it. You can also feel parts of the wire in the head, which I didn’t expect. For the three weeks after the surgery, when I put my hand on my head, I freaked myself out a little bit. They implanted all of this in one surgery. A lot of Parkinson’s patients have to do it in two or three procedures over time because, as I understand it, insurance requires that the process be done in multiple surgeries. But the NIH can do what they want, how they want, surgically. I was very lucky that they could condense it and that I didn’t have to go under anesthesia twice. During surgery, I was awake when they put in the electrode and were finding the right position for it, but I was fully under when they put the machine in.

AB: And what do the electrode and machine do?

JN: It basically makes a field in the brain, and this current touches different areas and causes a response. They change the field at my subsequent programming visits to see what the correct one is. The electrode has four points on it, and within every voltage amount, they can adjust frequency, pulse width, and other factors. For a while there, we were on low frequency, but they’ve found that I need a higher frequency. That’s only one factor on one voltage on one part of the electrode. My neurologist who treated me with BOTOX for a decade before this surgery said that there are 22 million combinations. Obviously, they know that some are off the table. With Parkinson’s and with other dystonias (ones they’re more accustomed to working with), they know what typically works. On rare occasions, they have to try things a little outside the box. One of the settings that I have right now is very unique and new—they don’t use it for anything else. 

The purpose of the first appointment (a month after surgery), when the machine in my chest was turned on, was to test my limits so to speak. They would try one voltage with one frequency and one pulse width, and then they’d gradually change one parameter and note when I had a physical response. My arm or leg would cramp, or I’d feel like I couldn’t breathe. They just needed to get levels and see what I could withstand so that I’m not walking around having a physical response—there’s a fine line between where it helps your hand and where it turns into something else. They give me four different options that are programmed into the machine when I leave each programming visit. I have a remote control and can switch between settings between visits because the results don’t always show up in the testing room. They think they see immediate responses, but you need to keep trying them at home. They gave me one that was set at 1.6 voltage and I could increase the voltage to a certain amount (they did put limits on it, by the way!) to see if it got better or worse. Obviously, the first group of four settings were ones they thought had a higher chance of working based on studying dystonia. But it’s a long process, and we are really still figuring out which parameters to use. The setting I’m trying now, which seems to be working well, might be different in the end.

Since focal dystonia is so different from the other conditions they’ve used this surgery for, they really are guessing in a lot of ways. Cases of other kinds of dystonia provide a basis, but it’s still so different. I have one setting right now that’s called “interleaving” (not “interweaving”) in which two of these settings are weaving together. There are so many variables they can change. They can make the current pulse on and off. (Some people do better with that.) But there are variables even within that: they could make it pulse on and off once a day, once an hour, once a second, or once every ten minutes. So, they try to figure out where you see a benefit, and then decide whether to poke around more in that area, or to try something different. Some of the settings have not worked well at all for me, and some started off okay and have gotten worse. 

It’s so hard to explain. Each time I leave an appointment I have renewed respect for medicine.

By the second visit they said they knew for sure that it was working. That was the big step, because there was the possibility they could have put the electrode in slightly the wrong place and it wouldn’t have worked. I don’t remember it, but I had another CT scan right after surgery and the electrode was where they wanted it to be. And during one of my programming visits, when they turned the machine off, I lost most of my ability to play. When they turned it back on, I could move my left hand on the flute—not as well as I wanted, but enough to see that it was working. That was big for them—and for me. 

So, we know it’s working. But what’s bothering me lately is wondering if it’s going to work well enough, or if BOTOX by itself will still be better. That’s the question I’ve been asking. We can see that we’ve changed the pattern of the focal dystonia response. We can see by video that it’s better. But it doesn’t feel better much of time. They know I’m living with this process day to day, but they say it is working and changing and that there’s still more to do if I can I live with this a while longer.

“They said they actually can see on an MRI when somebody with focal dystonia is coming close to something that gives them trouble because their brain will react and change before they even get there.”

My doctors at the NIH said to try a little BOTOX now to see if it did anything, so I went to my regular neurologist. He is not part of this study, but he knows all about it. He has the same iPad-like device because he works with movement disorders. He can’t change anything himself because of the trial, and he can’t see everything they’ve tried, but he can see the current settings. I told him I was kind of disappointed to have to use BOTOX in addition to the implants, but he said it’s working and that it could very well be worth it to give it more time. 

He said that he’s treated people with full-body dystonias who can’t live a normal life because their body literally is twisting and they’re in pain, and they go in for the surgery and it cures most of their problems. But when he gives them a little BOTOX, they look completely normal. It’s just that little extra that’s needed. It’s better than BOTOX alone. He said the idea is that, once they get the settings right, I might only need to come in once a year for BOTOX instead of every three months. My doctor at the NIH told me the same thing and described a patient who couldn’t walk due to one of these movement disorders. She had surgery which fixed her legs, hips, and back, but her arms were still having tremors. But with BOTOX, the tremors are gone. She went from wheelchair to pretty close to normal movements.

They might try constant current with me at some point. Constant current is different than voltage. Any science nerd will understand that voltage waxes and wanes and some people respond better with something more steady. So, if they don’t like what they see with my current settings (or if I’m not happy with the results), they might go ahead and try it. 

AB: How long do you intend to have these implants in? Or are they in forever? 

JN: A question I had before surgery was, if we find out the electrode is placed incorrectly, can we take it out? They said they could if it’s early enough. They never like to pull anything out of the brain, really. If I decided at some point in the future that I wanted to go back to the way I was before, they could just turn the machine off. It would be there, but it doesn’t really get in the way. At any point, I could turn it off. I could turn it off right now with my remote control. (The way the system is set up also prevents hacking, which is something people don’t think about. I’m not hackable!) 

Also, right before I went into surgery, they had just approved a rechargeable battery. People with Parkinson’s and other movement disorders have had to get new batteries put in every three-to-five years, but it so happened that these rechargeables came out right before my surgery. So literally, I recharge myself once a week. And it doesn’t need to be replaced for upwards of fifteen years. For people with Parkinson’s and other movement disorders, it seems like they develop something new every few months. I was one of the first people to use the iPad-like device. They had a different programming device when I signed up for surgery. 

It has been a long process since my appointment to turn the machine on back in July 2018. You just want it all to work right away. And it feels different to be dealing with current rather than BOTOX. I told them I was going to play new music for them when I come in again because I feel myself worrying when a certain spot comes up that I can’t play. They said they actually can see on an MRI when somebody with focal dystonia is coming close to something that gives them trouble because their brain will react and change before they even get there.

AB: Well, I hope you keep blogging about this process because it is totally fascinating. I eagerly await the next installment. 

JN: Right now, I’m doing little short posts because I’m not sure what to say or how to say it. I feel unstable at this point. I was scared things weren’t working and didn’t want to write yet, so I put out little bits, but not the long explanations. I don’t feel ready. It’s a lot of mental energy to explain this, and to explain it correctly, all while still trying out settings and going to appointments. 

AB: I feel like I should say thank you on behalf of the universe for doing this, because, not only is it really brave of you, but even if it ends up not having the result that you want, it’s still really valuable and no doubt will be helpful in the process of learning how to treat this. I do hope you have the result you want, though!

JN: It is part of a larger process. I wish I knew where they will be with this in ten years. If it were easy to fix focal dystonia this way, I know they’d have a line out the door. This brain surgery only has a 2-3% bad outcome and that includes all the bad outcomes, like when you hear a drug commercial with all the side effects—it makes the drug sound terrible. My surgeon has only had one person on the table have a stroke and they were fine later. So, I knew it was pretty good odds for the surgery itself because it’s not like a brain tumor when you’re having to excise something. You’re putting something in very precisely. I hear those with Parkinson’s are leading brand new lives due to these surgeries. 

I hope they keep working on musicians, because so many of those theories about why people get focal dystonia are not true, according to the doctors. They say it’s a real condition—not hysteria, and not from over-practicing. It’s real. It’s not in your head. 

AB: I wonder if someone who had been diagnosed with dystonia asked you for advice, what would you say?

JN: For just focal dystonia, or embouchure dystonia, too? 

AB: I guess I shouldn’t lump it into all one basket. It’s very different, right? 

JN: Yes. Right now they don’t have plans to treat embouchure dystonia because it is different. But if I were meeting with someone who was in college who had a definite diagnosis of focal dystonia, I would ask them to reconsider their career. Because at this point, unless things change in the next few years, they will be fighting dystonia their whole career. That said, if their career is more in the study of music or the teaching of high school, and they can function on a level that meets that demand, that’s different. But for the performer who really wants to perform, I think that they’re going to be mostly distressed. If I were talking with someone who was older . . . I would have probably given myself the advice to look around. It’s hard because we’re out of school, but close enough to it to still have the student loans. I didn’t have a passion to try anything else, but I’d say if you have a passion for something else, consider it. Because, though it’s not your fault you got this, it’s going to be with you. It’s like a high school athlete who has injured something like the ACL—if it happens once and you can make your way back, that’s OK. If you get it twice or three times, you may not be built for that sport, even though you may love it. Also, I’d say it’s important to be in touch with people who have stayed in music a long time with the condition. Are they truly happy with their level, or are they still searching? Because if they’re still searching, there’s a certain amount of emotional pain there. So, I would say, if they have something else they would love to pursue, why not do that instead? 

For anybody with a hand focal dystonia, if you’re going to stay in the business, or you just want to see, I would say to try BOTOX. It’s temporary. See a doctor and try this because you may get a result that is close to your normal level—you just require something different than the rest of the population. 

“I felt like this is what I was supposed to do with this condition. I was the person who was supposed to go in and do the brain surgery first. ”

It’s a longer conversation, but definitely the younger they are, the more I would say let’s think about this. There are a lot of years in your career. How many of those years do you want to be frustrating? I knew I was lucky to be in a situation where my husband had a career and where people kept hiring me. We had a family setup of where he was earning the majority of the money and we could live like that. If you’re on your own, it’s very hard to rely on a condition that affects your ability to do what you do to make money, because at the end of the day we all have to pay bills. But we have to make choices and everyone’s choices are different. 

My daughter wants to go into musical theater. The schools readily say they get 1300 applicants a year and will accept twenty. And that’s true of schools that are not even the best schools. (I’m hoping they’re the same 1300 kids that are auditioning all across the country!) But my daughter did ask me, will I be poor and living in New York City? And I said, that is a decision you have to make. If you can pay your basic bills and you are living there and you are happy, then you are not poor. If you are happy scraping along making a living in New York to take auditions then you should do it. If you don’t want to be scraping along and maybe working as a waitress for seven years or three years, or doing something behind the scenes . . . If you’re happy pursuing the dream, then do it, but you have to decide if you’re willing to wait it out. And that’s kind of the way I feel about dystonia too, even though it’s not the same. If you like your life the way it is, stay. But if you’re unhappy, that’s where you have to decide. There have been some junctures where I felt like I was being told by the universe to get out of the business and I didn’t. But I always wanted brain surgery from the very beginning. 

AB: Did you?

JN: I did. From the very first doctor I saw, I would joke around with all of them and ask if I could have brain surgery. And they always said no, of course. My first doctor in Houston told me it would never be an option, and I said, but it’s related to Parkinson’s and Alzheimer’s. Same idea, right? He said, yeah it is. I would always say that I wanted brain surgery, and the residents would look at me like I was crazy. So, when this opportunity for the study came along, I said, well, James, I have been saying for fifteen years I wanted brain surgery—I kind of have to do it. So, when we got down to the last couple months before the surgery, I felt like this is what I was supposed to do with this condition. I was the person who was supposed to go in and do the brain surgery first. 

—March 2019

Since the time of this interview, Julianna sent this update: “A setting I have been on since my last appointment in June has been the best so far. I’m very excited about how I feel when playing, and if all stays the same, I am in an amazing spot.” 

You can learn more about Julianna’s process through this trial on her blog, on her Facebook page, and via Instagram (julimarienic). 

Click here for the link to the official site for this study.