Before I share my onset journey, I wanted to discuss the key classical intrinsic, extrinsic, history, and traits that stand out.
 

  • Median age: 25 during onset
  • At height of playing abilities during onset - best I've ever played
  • Possible history of dystonia: When 15 years experienced an intense tightening of muscles on one side of neck, slight spasm when turning head one direction, and shooting nerve pain. Doctors thought possible onset cervical dystonia, but after botox injections and deep tissue therapy for a year, it went away and never returned. A different form of neck tension set in three years after onset embouchure dystonia.   
  • Started horn at a late age of 15 years old. But had been studying music since 5 years old. 
  • High achiever and typically in leadership roles or positions; I was a lead player/high horn player and rarely not principal. Does well under pressure and does not struggle with anxiety or stage freight.
  • (Abnormal facts: Female. No history of writers cramp. Have an identical twin sister who plays trumpet and no forms of dystonia or neurological disorders.) 
  • Environmental factors during onset: Heavy switch of focus onto perfecting technique in lessons, repetitive and isolated technique work in sessions, and emphasis on perfectionism down to the last detail. Although polished my playing vastly in a short period of time, the imbalance or lack of focus on musicality resulted in frustration, not looking forward to lessons sometimes, and seeking expression elsewhere through guitar playing. During year of preparing for graduate school auditions. During year of many performance opportunities and responsibilities. Imbalance of personal practice time vs. performance demands; competitions, auditions, guest performances, ensemble concerts, masterclasses, graduate school visitations.  
  • (Possible) Mechanical changes: In 2005 a professor changed my natural embouchure. After 5 months I transferred colleges and told to go back to my normal embouchure because there was nothing wrong with it. 
  •  




In early 2009 while completing my undergraduate degree in music performance on horn, I started experiencing onset symptoms of Focal Task-Specific Embouchure Dystonia.

By this time I had actually been in my 6th year of college. I had been a non-traditional student who couldn't always afford to attend college, and therefore ended up studying at three different schools between 2002-2010: Morningside College/Sioux City, University of Northern Colorado, and University of Northern Iowa. 

I often received scholarships, but even then on top of financial aid or work study, my circumstances were poor and I often missed out on opportunities to travel and play out of state. I should probably mention I have an identical twin sister that was also going to college at the same time pursuing trumpet performance, paying the same amount of tuition, and equally needing resources. We were the third and fourth offspring to be put through college.

My primary professors were Dr. Tina Su, Dr. Thomas Tritle, Marian Hesse, Dr. Thomas Porter, and Dr. Michael Berger. I received valuable feedback and guidance while seeking out private instruction, masterclasses, or workshops with the following professionals/guest artists; Dale Clevenger, Thomas Jostlein, Bill Caballero, Elizabeth Freimuth, Michael Thompson, Jeff Agrell, David Thompson, John Ericson, John Cerminaro, Kaz Machala, and The Four Hornsmen.

Despite starting horn late at the age of fifteen, I excelled at it and every college I attended I held principal positions, primarily in orchestra, while also often subbing in neighboring orchestras outside of university. I even took a year off to go and play associate principal in my home state. I won a concerto competition my 2nd year of college, and a finalist in another university competition the same year my dystonia onset symptoms occurred.

I was at the top of my playing abilities when dystonia hit me. One day I noticed during rehearsal I was having trouble doing a decrescendo. I thought maybe my corner muscles were giving out, but this was different - it was like the whole musculature of my entire face acted as if gravity tripled in density while trying to play quietly on a meager middle C. I felt confused because I could crescendo and hold fortissimo notes without any problem. I took it as an endurance issue and tried to address this in my warm-ups and warm-downs. I tried to test my long tones, and it seemed like it took a whole practice session to feel improvement on something that usually took less than a minute to fix.

It wasn't like a muscle weakness, but more like a circulatory shortage....if you've ever had anemia you know what I mean. For example, let's say one day you're walking up some short stairs in your home and all of a sudden you are surprised at how exhausted you feel; as if you already ran a marathon - yet, you're not sweating, you're not sore, there's no pain, not out of breath, but you feel as though your knees could buckle and topple over. You feel like you need to sit down because gravity hit you like a thousand bricks. In that moment you know something is very wrong because getting that exhausted so suddenly for no apparent reason, while doing an action you've done successfully every day makes no sense. But some days you have the ability to go up the stairs normally, and others not. You go to the doctor and they inform you that your body is low on blood cells due to anemia and this is why you are having these abnormal signs; physical signs that are actually masking internal body regulation problems. This is what Focal Dystonia onset feels like, except, backwards in any of these various ways; you can play up but not down, you can play loud but not soft, you can slur but not tongue, you can play in your high register but not low, etc.  

Focal Dystonia is one of those things that slowly sleeps in...then hits you overnight. It seemed these very subtle minor issues would improve, then creep up in another area of my playing and then disappear; I noticed another random day I couldn't grab the last few notes at the end of a descending scale passage; I would fly right past them, and slowing it down surprisingly made it worse. I sat there practicing scales trying to figure out why they were very sluggish or sloppy one second and then perfect the next. It was inconsistent and I saw it as either needing to modify my playing habits or balance in energy output/endurance, or part of aging, and at one point thought I may be outgrowing my horn. 

But there was one thing that was reoccurring. An air leak came and went in my middle register (which was due to my lower lip losing control), which I believe went far back as 2007, and came back with a vengeance in my middle register in 2009. Anytime I had to articulate in my middle register loudly, an air leak would occur, and two instances where I had a slight wobble on a quiet middle register note.

Not too long after this I had struggles landing on descending jumps on and off; as if my lips could not sense the distance. No one could hear it. But I could feel it. 

This was sensory loss, but I didn't know it. I kept hoping my body would adjust and catch on in order to correct things. Normally when you miss notes or a passage is sloppy, we adjust a little; making sure our mouthpiece is in the correct spot, use more air, make sure we're not overusing or adding pressure, allowing our body to fill in the rest - letting us know if the lower lip needs to relax or corners tighten...this happens naturally. But in the case of onset dystonia, the slow sensory loss confuses us, because we don't get that natural feedback, and no matter how much we try to physically adjust, use air, work on fundamentals, it doesn't help. It sometimes helps mask things, but eventually it makes makes things worse.

I kept doing my best to practice smart, to be efficient and only focus on what I needed to do. However, I have to mention that it wasn't necessarily possible because I was in an environment that focus heavily on mastering technique and repetitively fixing errors or overdoing things until perfect. After studying with several professors over the years, I noticed an imbalance of musicality or expressiveness emphasized, and I believe that is why during this time I started doing more guitar playing at bars and coffee shops just to break free of the day in and out of playing the same things on horn over and over again. On horn, I was busy with so much performing during this year and was trying to not overwork myself, that all I could do was fulfill all expectations, and cut back on playing during rehearsals and practice where I could in order to find balance.  

Although I believe all classical musicians strive to be their best in order to make it professionally, I think that this culture of overdoing things and perfectionism is not always due to our personal nature, but taught to us through our surrounding environment, if not expected due to academic responsibilities and respect for ones teachers. I'm not blaming one thing on triggering my dystonia, but I know for a fact that repetitive technique and fixing errors, while not focusing on anything else, had a hand in it. There's never been another point in my life I felt less musical, even though I sounded the best I've ever have. I also have to mention that this was also a year we were preparing me for graduate school auditions, and there was an extra sense of rushed emphasis on improvement.  

In February 2010 my professor and I were trying to pick a piece for me to work on. I was surprised that I could play through the first movement of Gordon Jacob's concerto, but when it came to Mozart's 4th, 1st movement, it felt sluggish. We decided to work on Mozart because it had been a while. A week later in lessons, my professor saw something concerning. She said she noticed that when I played through the first page my face looked normal, but then as the lesson continued on, she noticed weird movements in my face. She said, "Look in this mirror." So we chose an isolated phrase. The first time I played it, things were fine, but then as I repeated it, it looked like my muscles in my face were moving more than usual...as if I were chewing food or bubblegum. It was subtle, but enough to look abnormal. I didn't feel these movements, but it was weird how they weren't there, but would happen as I continued playing on. My professor said, "I even notice one of your corners drooping." My left side corner would slowly anchor downwards, and then reset back to normal every breath. 

I told her that maybe because I was playing so much lately; being principal in orchestra with a heavy repertoire this year and no assistant, preparing for grad school auditions, doing the concerto competition, upcoming masterclasses, and touring with orchestra, that maybe I need to focus on more low horn playing. I was worried about overworking myself. She immediately got me an assistant in orchestra, we started working on Rochut Trombone Etudes, and I stepped down from some ensembles such as woodwind quintet, horn choir, brass choir, and my principal position with a neighboring orchestra.   

Sadly, none of this helped, and by May I couldn't get through Mozart. It sounded like my playing was progressing backwards and getting more sloppy despite everything we tried. My professor and I didn't know what to do. We just hoped for the best that if I practiced some more on it before juries, it would be good. 

That was the first time I couldn't make it through a piece at juries. Dropped out some measures, couldn't get certain notes to speak, and exhausted. That was the first time I received low marks. Ever. I never cried so much in my life.

My professor and I talked about what I could do over the summer. We felt we had tried everything, so therefore it maybe psychological? We decided it best I take time off over summer, play as little as possible, and when I do, I should focus on buzzing, minimal basics with gentle playing. On top of re-reading The Inner Game of Tennis by Gallwey, I dived into Fight Your Fear and Win by Don Greene, and his book Audition Success. I worked with a therapist over the summer, and even underwent hypnotherapy. Although I learned a great deal about the power of cognitive psychology and how important performance psychology is in the arts, and it boosted my self-esteem....I saw no improvement in my playing symptoms. The only area I new it provided me improvement in was forcing me to acknowledging and embrace that things were changing whether I liked it or not, and that I was not going to be able to love my playing or sound during this uncertain time, so I needed to not be hard on myself or my playing and make a plan B in worst case scenario.   

Fortunately things degraded in my playing so rapidly (and I wasn't even trying...it was during my time off) that when I tried to pick the horn back up in August 2010 (my last semester before graduating in December 2010) that I didn't have time to process the fact that my playing was officially gone. Two weeks into classes and rehearsals I couldn't make it through 5 measures of playing without using immense pressure to hold things together. My lips got so swollen by the 3rd week that I couldn't get a sound out of my horn, and when I did, spasms would happen and I couldn't even hold out a note.

I was crying in my professors office and she was tearing up too. She went up and beyond to talk to the rest of the faculty about my problem. My directors were very understanding. I immediately dropped out of all ensembles except orchestra where I was granted the option of being bumped down to 4th chair. I was allowed to only attended a handful of lessons that semester, most of which were talking because I couldn't play, and although most professors would have given a definite F or D for attendance, my professor gave me my first B+...which still made me cry because I had always gotten no less than A+ in lessons. It took a lot of convincing the brass faculty to waive my jury. My professor tried to explain what I was going through, but none of them understood my symptoms, and some of them were very kind to suggest ice packing or massage. One of them asked me to play for them in their office. When I did that, they looked at me like they were watching a dog dying that needed to be put out of it's misery, and they said to not loose hope. Not too long after that they finally waived my jury and wished me luck and told me to find a musician that might know what I'm dealing with or seek medical help immediately. Even my professor was at a loss. 

Although I dreaded it, I had read a description of focal embouchure dystonia a long time ago and thought that my symptoms were kind of similar, yet not completely; I wasn't having uncontrollable spasms at this time, which seemed like the number one symptom, but was having task-specific symptoms and inability to grab notes on the first try (lots of flubbing notes). I wanted to reach out to a musician who had it first. So I reached out to some musicians I read online with similar symptoms; only to find they charged a large amount of money just to ask them general questions. Some people claimed they could cure me through psychological work, and some referred me to other brass players who had little to no advice of benefit. Others told me I needed an embouchure change, to fix my technique, etc. I was becoming very disheartened and on the brink of giving up. I didn't even know what type of doctor to see.  

Eventually I ended up contacting my primary physician in my home state and asked if she could refer me to a well known clinic in Minnesota because I would be living in North Dakota after graduation. But it took forever to find the right specialist. I could have traveled to a different neurologist out of state, but I didn't know any better at the time, and trusted my doctor. So I waited and finally the clinic informed us they had someone who has diagnosed musicians dystonia before. Part of me didn't want to go, but part of me just wanted to get it over with. 

© 2011 by Katie A. Bergløf