ABOUT THE BLOG LIVING WITH EMBOUCHURE DYSTONIA
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In early 2009 while completing my undergraduate degree in music performance I started experiencing symptoms of Focal Task-Specific Embouchure Dystonia. By 2010 I was completely disabled to the point of being unable to produce a sound out of my horn. None of my professors or anyone that I reached out to knew how to help or what was happening to me, nor about the existence of such a malady.
After months of trying to find a neurologist and more than a year passed I was officially diagnosed in 2011 thanks to a referral from my physician. Thereafter I started the process of searching for information on embouchure dystonia. It was shocking to find that barely anyone, especially professional level musicians, were not speaking out about it. There is no publicly documented rehabilitation attempts or strategies and I was equally confounded with the lack of accessible quality resources (e.g. research articles, reputable practitioners, clinics, neurologists, support groups) collected in one place.
An overwhelming amount of misguided information still exists; usually published by non-dystonic musicians, psychologists, and people scheming for profitable amounts of money claiming musician's dystonia is solely a psychological or emotional behavioral disorder with no scientific publications on the details of their methods and no research to back up their claim.
Most offensive is the idea that if a musician isn't able to be cured, then it is the musician's lack of commitment instead of the practitioner's method. For a disorder with an unknown cure it is easy to fall into the trap of pseudo-psychology explanations. This doesn't happen so much in the realm of hand dystonia, but primarily pushed on brass and woodwind players with embouchure dystonia.
Initially I started my blog Living with Embouchure Dystonia as a way to keep track of noted observations throughout self rehabilitation. After what is considered a career-ending diagnosis I was not going to shoulder an undertaking in silence, nor go out without a fight.
I had my first large-scale orchestra concert in 2016 and proud to say I've taken a huge step by joining a community orchestra in 2018 with the hopes of slowly reintroducing myself to performing. After making significant progress in 2013 other musicians with dystonia started reaching out for advice and guidance. It was then I realized the dire need to advocate more awareness, share information on various types of brass performance-related injuries, and collect as much embouchure dystonia research possible on my blog.
Because embouchure dystonia in particular has no publicly documented rehabilitation strategies and attempts currently, by default I am one of the few, if not only, brass players who have documented an in-depth process over the span of 10 years. The importance of this fact is one of the reason I have kept my blog going so long...in the hopes of passing on some insight into what it is like living with embouchure dystonia and managing it long-term.
Music performance-related injuries are still taboo to speak about, and the field of music and medicine is only in its infancy. It would be ideal if the music performance field followed in the footsteps of sports medicine; open about the truth that performing comes with it's own risks that are not always avoidable, but simply a consequence of the demands of the profession and quite common.
Yet, in the profession of classical music we are trapped in the old and harmful mentality that if one has superior technique, skills, and chops, they can avoid major physical setbacks. And if we do get injured or can't recover, then we surely must have poor mechanics, doing something wrong like playing with too much tension or pressure, mentally unfit, or just don't have what it takes to be a professional...when in fact this couldn't be farther from the truth!
Another flawed view is that because focal dystonia has no known cure, one shouldn't focus on the symptoms. Yet it is important to realize that any disease or disorder with no cause and no cure must focus on symptomatic treatment because recovery is not just about the "cure", but about the overall well-being of a person too. By alleviating or significantly reducing symptoms, even if not a 100% recovery, can lead to improvement in ones happiness and restore enjoyment in playing their instrument again.
Research has also shown that retraining/physical rehabilitation as the most effective treatment so far. The only methods to have shown complete recoveries involve Deep Brain Stimulation (DBS) or Focused Ultra-sound brain surgery, which requires more research and very few get the opportunity especially within the United States due to the FDA restrictions.
Another issue getting in the way of recovery is due to those against traditional medical treatment, and those against non-traditional treatment. It is important to realize that by being against one or the other doesn't help those who may actually improve from one form of treatment or the other. A great example is botox. Several non-dystonic musicians advise against or misinformed about it, but many dystonic musicians have seen improvement and rely on it, but don't feel comfortable speaking up about it....and it doesn't help to judge them for relying on this form of treatment. In the end, it is up to the musician with dystonia to make their own choices in what is best for them, and it is up to the rest of us to be open-minded about the various treatment options; whether or not they work for everyone or a select few. Recovery is an highly individualized process and there is no cure-all. Therefore a holistic approach is ideal.
The last flawed view on musicians with dystonia is that we should not reach out to other dystonic musicians who claim to help others because they are not medical professionals, nor should we reach out to medical professionals because they don't understand musicians....and should instead rely on non-injured professional musicians who have evaded injury (as if this makes them more knowledgeable than those who have experienced a major physical setback, and medical professionals).
Although I am fully against the collecting of money when there is no known cure, I do fully support dystonic musicians who help others by sharing their own journey and insight. It is important for musicians with dystonia and injuries to be open with one another, otherwise we will learn nothing.
Some doctors may lack an understanding as there are few specialists who have seen and worked with musicians with dystonia, it is equally our fault as musicians for not bringing music medicine and health to the forefront and help bridge this gap between the two professions! An important reminder that neurology is also in its infancy and every attempt to conduct research is not a lost cause. It's equally important for musicians with dystonia and neurologists to come together to find and create cohesive approaches to recovery as they both have advantages of understanding the disorder from different angles.
I believe the rising number of injuries is due to these misconceptions and flawed cultural mindset being pushed on the next generation of students and musicians, along with standard pedagogy having too much of an emphasis on perfecting technique down to the last detail. Yes, injuries are not 100% preventable, and there is no known prevention of embouchure dystonia. Yet, there isn't a doubt in my mind the current way things are being taught and enforced in today's pedagogy practices is contributing to more injuries and adding more stress to career-ending setbacks like musician's dystonia.
It is not as though organizations supporting performance art health don't exist. The issue is that in order to make a greater difference in educating others the field of music and medicine has to be important enough to collegiate music programs to want to host guests, promote educational workshops for current music students, music teachers, professors, and professional musicians.
Courses on Alexander Technique, Feldenkrais, Rolfing, musician wellness programs, and musician counseling at universities has been popping up more often in the last 5 years. Teaching body movement methods is a great start and I am happy to see more people trained in these techniques.
However, universities could go even further by bringing in guest artists who have experiences with injuries or disorders; doctors, neurologists, and physical therapists (allied health professionals) who are involved in performing arts medicine and at performance art clinics; or even a panel of musicians who are deeply involved in the area of performing arts injury advocacy who can speak first hand.
Another great option is for professors to bring in individual guest artists who have dealt with major setbacks on their specific instrument, as they can relate more on a personal level, explain issues in musical terms, and demonstrate. I believe we would see a decrease in musician injuries and increased interest in the profession of performance art health. Ultimately I wish I could see that dream through in my lifetime and travel around to give open lectures on embouchure dystonia and brass performance-related injuries at universities, or at least start a conference for dystonic and injured musicians.
Naturally music students seek out advice on injuries and setbacks from active professional level players, teachers, and professors who may not have experience with their particular setback or dystonia.
Professors and professional brass players at best are able to provide knowledge on mechanics; how to not overdo pressure, using air properly, how to warm-up/down, and how to improve stamina, but rarely understand the importance of how focusing on these things will make things worse because recovering from injuries and disorders do not involve fixing errors/habits in playing, mechanics, or psychology, but solely deal with healing the inside of the body (damaged tissue, damaged neurons, etc) or restoring brain function and sensory.
That is why when it comes to major medical concerns, it is always best to reach out to a doctor or neurologist first, and then later, if trying to rehabilitate, to work with a diagnosed musician who has experienced your setback first hand and can provide further guidance. The trouble is there aren't many of us who speak out so boldly about our injuries or disorder.
Another challenge to the field of music and medicine is that musician's dystonia is hard to diagnose during onset stages due to the similar underlying symptoms of overuse injury. There are also few neurologists who have seen musicians dystonia or know how to properly diagnose it. However, the ones that have seen the most cases are highly recognized for the significant amount of research they've done on musician's dystonia and sought out, such as Dr. Eckart Altenmüller, Dr. Steven J. Frucht, Dr. Stephan U. Schuele, Dr. Mark Hallett, Dr. Richad J. Lederman, and several others.
Also, musician's with focal dystonia need each other since it is only 1-2% of us among the musician population that end up with dystonia, and it is important to share strategies, progress, and to be emotionally supportive of one another. I understand why some remain quiet about their disorder, yet, it is important to have a place to console in only those who have the disorder.
Therefore, I created three groups on facebook that I hope will help: "Horn Players with Focal Dystonia," and "Musician's with Dystonia and Neurologists Sharing Scientific Knowledge and Resources," and "Musicians with Dystonia Emotional Support Group." Musician Focal Dystonia is a very touchy subject and highly misunderstood by those who do not have it. Therefore there is a need for an exclusive place among MFD sufferers to feel safe speaking out.
It is my goal to someday write a book about life, music, and the art of perseverance, to start a foundation for musicians with embouchure dystonia which helps those who cannot afford to the cost of diagnosis/seeing a professional neurologist, treatment, travel costs, and rehabilitation help from a reputable practitioner. I also want to re-publish my horn transposition guide if I ever get around to it.
Most of all, I want to provide hope, light, and inspiration to others who suffer form this disorder.
ABOUT THE BLOG AUTHOR KATIE A. BERGLOF
Hailing from the Midwest, Katie was adopted along with her identical twin sister as newborn infants from El Salvador during the 1984 civil war. They were raised in the tiny town of Sherwood, North Dakota on a small rural farm. Katie and her sister had a passion for music from an early age and both enrolled in private piano lessons at the age of 5. In middle school Katie took up classical guitar and violin lessons; earning a guitar scholarship to the International Peace Gardens Summer Music Program in Canada; and her sister took up the trumpet and started participating in solo and state competitions. Katie and her sister's parents where of Scandinavian heritage (Swedish-Norwegian decent), which is why you will find Katie making Lefse during the holidays, and basing many of her drawings and artwork on Norwegian mythology, culture, heritage, history, and architecture.
In 1999 half of the Berglof family moved to Carroll Iowa, where Katie at the age of 15 was coaxed into playing the French horn in the high school band if she wanted to accept the guitar position in the jazz band. Although she took private jazz guitar lessons in Omaha Nebraska every weekend. The genre was not her forte.
Surprisingly Katie ended up falling in love with the horn after her band director Dr. Frederick Burrack gave her a recording of a professional horn player. She took the recording home over summer, bought all the Mozart horn concertos, and started playing along with the recordings every day. The following year Katie won all 1st chair and principal positions in several honor bands, all-state, and was both a finalist and winner of a handful of scholarship competitions; often having to compete against her twin in the finals. Her senior year she was a finalist in the Northwest Iowa Bandmasters Major Landers Scholarship competition and performed at the Iowa Music Education Associations conference.
During Katie and her sister's time in Carroll Iowa, a missionary worker from the U.S. who was stationed in El Salvador reached out to the Berglof family to inform them that the biological family of Katie and her sister were looking for them. Katie and her sister were able to fly their biological mother to Iowa in 2001 where she stayed with them for a year and miraculously given a free emergency surgery for a ruptured appendix on the day of her departure flight after the story of the adoption story was shared in the newspapers. Katie and her sister were able to come into contact with most of their biological siblings over the phone, mail, internet, and in later years via skype and facebook.
Katie and her sister found out that their biological mother didn't want to give them up for adoption, but because they were born prematurely and severe medical needs (Katie needed to undergo heart surgery, and both infants were having seizures and malnutrition issues), the hospital told the biological family they could not afford to keep the twins.
The biological family decided everyone would come together to pay whatever amount needed to cover the medical costs, but when they went to the hospital to see the twins (the mother remained at a midwives house due to illness from the placenta), the hospital had already put the twins up for adoption without the family consent and would not give the family information on where the twins went. The family went through tremendous pain and prayed to someday find the twins again.
Due to Katie's parents preference of a private christian Methodist-based in-state school, Katie and her sister started off their college career at Morningside College in Sioux City Iowa. Katie held principal horn of the Sioux City Youth Symphony and her sister principal trumpet in 2002. Although her time spent there was very short, she had a supportive professor (Dr. Michael Berger - principal horn Sioux City Symphony). Due to her professors friendship with the famous UK horn soloist (and professor of horn at the Royal Academy of Music) Michael Thompson, Katie was able to attend the Michael Thompson Summer Horn Course where she and a small handful of hornist studied with him. The course usually took place in Italy, but was moved to the U.S. briefly. Before Katie moved, she won the college concerto competition and performed R. Strauss 1st horn concerto, mov.1, in Eppley auditorium.
In 2004 Katie's twin sister transferred to the University of Northern Colorado, and Katie won an associate principal horn position with the Bismarck Symphony Orchestra in North Dakota where she took private lessons with Tom Porter; professor of choir at Bismarck State at the time, and a Northwestern Alum/MA-performance horn whose teacher was Ethel Merker (the designer of Katie's horn).
In 2005 Katie returned to her undergraduate music studies at the University of Northern Colorado. At UNC she studied with horn professor Marian Hesse, and was principal horn of the brass choir and symphonic band, played in a brass quintet, and substituted as principal horn of the university orchestra and wind ensemble a few times in her last semester. Due to the cost of out-of-state tuition, Katie transferred to the University of Northern Iowa one year later in 2006.
With a huge amount of respect for Dr. Thomas Tritle while growing up, Katie was thrilled to study with him at UNI. In the Summer of 2006 Dr. Tritle nominated Katie for a teaching assistantship position under Michael Thornton (professor at CU-Boulder/principal horn Colorado Symphony) at the Rocky Ridge Music Festival. Unfortunately, Katie could not afford the cost to attend, but was honored to be offered the position.
In 2007 Dr. Tritle retired and Dr. Tina Su became the professor of horn. During this time Katie was principal horn of the Northern Iowa Symphony Orchestra, the Wartburg Symphony Orchestra, Northern Iowa Wind Symphony, and Brass Choir. She also performed in woodwind quintet, horn quartet, and horn choir. She loved chamber music and performed Ewazen's trio for flute, horn, and piano on her recital. Her favorite memories were of performing 4 Songs, Op. 17 by Brahms, for 2 horns, female chorus, and harp. As well, performing the solo horn in the piece Missa Kenya by Paul Basler for large choir, horn, percussion, and piano. Katie also enjoyed premiering a composition by the award-winning jazz composer Michael Conrad called Aggression for Horn and Piano. Katie had no regrets and felt she fulfilled her dream of playing principal horn/solo horn on many bucket-list major orchestral works she never thought she would get to complete in her lifetime.
During Katie's time at UNI she received valuable feedback and guidance while seeking out private instruction, masterclasses, and 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.
In 2008/2009 Katie was a finalist in the university concerto competition, she also went on tour with the orchestra, started visiting graduate schools, auditioned for the Chicago Civic Orchestra, and did a recording track for a band called the Midwest Hackers. Katie's sister (Allie) had won a 2nd trumpet position sitting next to principal Philip Dungey (daughter Natalie Dungey also played with the orchestra) in the Northwest Symphony of Seattle. Also in 2009 Katie met Thomas Jostlein who she originally wanted to study horn with at the University of Illinois Champagne-Urbana for graduate studies.
In late 2009 the severely noticeable symptoms of Focal Embouchure Dystonia started to appear, and by early 2010 it had progressed to a point that Katie could no longer play. The last piece she performed was Mozart's 4th horn concerto, and the last piece she played principal horn on was Brahms Symphony No. 2.
In 2010 during her last semester of college, her professor and orchestra conductor wrote nomination letters to Balu Music to enter her in a mute contest. Ion Balu decided to do a live video of the final drawing on the lawn of the Washington Monument for the 6 finalists. He put numbers in a glass bowl, and while he went to draw the winning number, a random wind gust picked up and blew a tiny piece of paper directly into his hand. Ion said, "This one must want to win. Let's see who's number it is." The winning number was Katie. Although this may seem like a small thing to win, the nomination was in an effort to cheer Katie up and motivate to keep believing in her journey. When she won, Katie took it as a positive sign that although things were looking grim, everything happens for a reason and that she was meant to take this path for a cause or greater reason than she could comprehend at the time.
After graduation and unable to pursue graduate school on horn, she thought of going into Music Therapy and even was offered an acceptance letter for a graduate school but realized it wasn't her passion or calling the moment she traveled out to visit the school on the east coast.
Fortunately while living in her home state of North Dakota from 2011-2013, Katie started volunteering at Erik Ramstad Middle School (which was relocated to a hockey arena during a massive flood) and taught private instrumental instruction. She also taught private lessons to students at Bishop Ryan High School. She loved working with the students so much and was surprised to find she wanted to pursue teaching.
COLLEGE/GRADUATE STUDIES & TEACHING CAREER
In 2013 Katie was accepted to CU-Boulder for graduate studies in instrumental music education. While at CU-Boulder she taught trumpet instruction in the CU-Middle School Ensemble, and traveled to Lyons High School, Boulder High School, and Lousiville Middle School for practicum while fulfilling coursework and holding a full-time job.
In the fall of 2015 Katie was honored to accept a teaching position with El Sistema Colorado; a nonprofit organization aiming to change lives through music, which brings music education into low income schools and directly into contact with at-risk youth within the Denver Public School district. Katie taught 4th and 5th grade band & instrumental instruction at Garden Place Academy, ECE music education at Garden Place Academy, co-taught kinder-violin classes at Garden Place Academy, assisted the 6th-12th grade bands at Bruce Randolph High School, and additionally the program assistant working alongside the head program director. While at El Sistema Colorado she had the rare opportunity to be a part of a highly talented group of music educators who worked as a team developing curriculum, assessments, composing music, teaching, and supportive of each other. She values the experience and how much she learned, as it has helped her become the well-rounded teacher she is today.
El Sistema Colorado unfortunately lost their executive director and went through huge financial setbacks and had to let go of a lot of their teachers and programs in order to re-build a smaller more efficient model to keep the organization going. Katie was sad to leave, as she was the only Latina instrumental teacher at the organization and loved being a role model and mentor to the students but understood how dire of a situation the organization was in.
In the summer of 2017 Katie traveled to St. Louis to participate in an embouchure dystonia research study at the University of Washington St. Louis, started her own private lesson business called Berglof Music Lessons, and taught private instrumental instruction for American Music School, Taylor Robinson Music, and Music & Arts in Denver, Lakewood, and Westminster Colorado.
In fall of 2017 Katie was hired on as a high brass instructor for Douglas County School District's DC-Downbeat Band program. DCHS has been and currently one of the best band programs in the state of Colorado. Katie was honored to be nominated for the job by a fellow El Sistema Colorado observational teaching coach and long-time Denver music educator Ron Artgotsinger. Surprisingly, the person prior to her that held the position was Katie's former doctoral assistant teaching coach Dr. Koerner at CU-Boulder.
During the last month of the school year, Katie had to step down from her job/work after undergoing physical exams due to noticeable changes in which her doctor informed her of life-changing news. Unfortunately the situation which could go either way, ended up with major physical complications and resulted in a loss/setback a month later which devastated Katie and put a lot of stress on her home life. Although this brought on depression and tested her, things started to slowly get better. In October 2018, Katie moved to Ken Caryl, CO (SW Denver).
It is Katie's goal to focus on her overall wellbeing; on physical health, healing, and to find more balance in her life. In May 2019 she had her gallbladder removed. In July she found out she was anemic, has sleep apnea, heart problems, and also underwent testing for ovarian and cervical cancer because 2 masses where found, and will have surgery (hysterectomy). In 2020 they also found a hernia that will need surgery.
In 2019 Katie was the Educational Program Assistant at the University of Denver Newman Performing Arts Center in Music Education Outreach and Engagement. In 2020 Katie moved to Washington state to be closer to family and enjoys playing horn with the Pacific Northwest Chamber Orchestra.
DREAMS AND GOALS
It is Katie's dream to someday write a book about music, life, and the art of perseverance, and to eventually get her horn transposition guide re-published (originally published in 2009 through Knol), to travel and give lectures on musician's dystonia, to start a foundation that helps injured and disabled musicians afford medical diagnosis, or travel and medical treatment under a reputable doctor or at a performance art clinic. Most of all she wants to help others see a light at the end of the tunnel and motivate them to keep searching for answers for future generations to come that may need this help.
I don't know what God has planned for my future or if I am capable of accomplishing much for those who have suffered the loss of something indispensable to them. However, I want to give a huge thank you to my family, friends, mentors, blog readers, and musicians who have reached out to me who have continually supported, motivated, and inspired me to persevere in life and to never give up on my dreams and goals.