Wednesday, December 25, 2019

Focal Embouchure Dystonia: Christmas Carols!

Merry Christmas!!! Here are some Christmas carols! ⛄❄⛄❄⛄❄⛄ Recorded this 30 minutes before work, in a straight mute, and no warm-up! Proud of how I sound despite no time to release tension thru prep-work. I know it's not easy to love the sound when you have embouchure dystonia, but gotta love it more than anything no matter what comes out or doesn't! Only way to enjoy playing is taking pride in what you can matter how miniscule! Not focusing on what you can't do. 💕 Lots of love to the dystonian music community, and of course to my friends and family! 📯🎶🎉 #embouchuredystonia #musiciansdystonia #loveyoursound #beproud #playout

Saturday, December 21, 2019

Pride in Every Step

"Don't wait until you reach your goal to be proud of yourself. Be proud of every step you take." - Karen Salmansohn

Sunday, December 15, 2019

My Musical Family!

Grateful every Sunday I get to skype with my twin sister Alison and my nephew Nathan for his French horn lessons! Mario (Ally's husband) is usually around too or off teaching private lessons, fulfilling instrument repairs, or preparing for his week teaching at two different schools. Nathan is so lucky to have a talented mama on trumpet helping him practice. In addition, she does all his homeschooling and runs her own photography business (Sweet Dahlia Photography) with Mario too, and both parents are in orchestra and participate in church activities. One busy and highly creative family. Nathan is doing great on horn and just read through his first couple pieces of notated music! I'm so proud of him! I love family and happy we share this bond with music. I'm missing them all so much this holiday (including all my other siblings and relatives far away)! Wish we could play brass chorales or Christmas carols this time of year.📯🎶💕

Focal Dystonia Recovery: Deviate from the Norm

Focal Embouchure Dystonia Rehabilitation BE LIKE: "Without Deviation from the normal, progress is not possible." - Frank Zappa

Musicians Dystonia: Speak Out

We need more people who are willing to say, "I've been there, and I'm here. You can talk to me without judgement."

Tuesday, December 10, 2019

Focal Dystonia (Violin) Film About Kenny Wong by director Julian Stamboulieh

Congratulatoins Kenny Wong on Best Actor of the Alternative Film Festival - Winter 2019! Film: Dystonia by director Julian Stambouleigh.

Sunday, December 8, 2019

Sensory Tricks with Dystonia

 A list of some sensory tricks (i.e. includes motor tricks/forced tricks/reverse tricks/imagery tricks) among various dystonias.

 If you know anyone that has Focal Embouchure Dystonia or thinks they might, the list of Oromandibular Dystonia (jaw dystonia) and Cervical Dystonia (neck dystonia) sensory tricks may give them temporary relief or lessen the overall strength of the symptoms.

 It's also a tell-tail sign you have dystonia if a sensory trick works. However, not all cases report sensory tricks, and some musicians don't even realize it until the neurologist finds they have one during evaluation.

 I come across a lot of brass players with FD where the symptoms and/or tension spreads to their tongue, jaw, neck, shoulders, and upper back. Some of these listed are already common tricks among brass and wind players with ED.

The most that I have come across and been reported to me consistently is: placing something between the teeth, some type of modified guard or splint, icing the face before playing (this worked for me but not the safest), touching the face or neck, drastic change in body movement/posture, focusing on a specific object or visual, change in size or back pressure of mouthpiece, and tongue depressor.

 The key is if you can find a way to incorporate it into rehabilitation or help the sensation of the sensory trick bleed over, it may aid throughout the recovery process. A few examples of this are: "geste" - visualizing the sensory trick, imagery that tricks the brain into avoiding playing mode (ex. I had to visualize blowing on hot cocoa to stop my embouchure from automatically setting). Using a modified guard or splint while playing. Incorporating a tongue depressor throughout retraining to override the damaged brain pathway.

It's not about suppressing the dystonic symptoms or avoiding them. It's about lessening them to a degree so that you have a chance to rebuild a new pathway that the brain recognizes. It's like distracting the messed up signal temporarily so you have a chance to rewire things. Sensory tricks can come in handy if you literally can't get a sound out or things are severe. However, not everyone has a sensory trick.

An actual highly successful method of treatment among musician hand dystonia patients is splinting. And there is only one study that was conducted in Japan on modified dental splinting on three patients with embouchure dystonia with all three returning to performance. It would be great if there was more research in this area of Musician's Dystonia.

Monday, December 2, 2019

Vibro-Tactile Stimulation as Treatment for Spasmodic Dysphonia

A look at one of the many current treatments for Spasmodic Dysphonia (vocal/laryngeal dystonia). I'm currently trying to figure out if this is the same or different than using a TENS unit, because TENS has helped me.

Saturday, November 30, 2019

Wednesday, November 27, 2019

Dystonia Film about James Wong - Director Julian Stamboulieh, Producer Benjamin Warner

Check this out! Is someone making a film about musician's dystonia (hand dystonia)???? If!!! Can't believe it! What a huge first step in awareness (this has got to be the first film about it ever). <3

Would be cool if someone did one over Robert Schumann since he was the earliest known case of musicians dystonia in history thanks to his detailed journals/writing (Robert Schumann's Focal Dystonia by Dr. Altenmuller: I digress. Wish I could have seen the premiere. <3

Update: Found more information on it. Posted below.

Dystonia is a short film about a violinist named James Wong (played by Kenny Wong) who, while studying at McGill University, is diagnosed with Focal Hand Dystonia: a neurological movement disorder causing the muscles of a player’s hand to involuntarily contract.

Dystonia Film director Julian Stamboulieh and producer Benjamin Warner Interview:

Sunday, November 24, 2019

(Video) Timeline: My Embouchure Dystonia Rehabilitation Over The Years

Time Stamps of Tests
0:04 - December 2011 - A year before this first clip, I couldn't get a sound out
2:15 - January 2012 - Tonguing Mid-to-High Register, Slowing Things Down
6:39 - August 2013 - Transitioning between Low and Middle Range Gap
10:43 - August 2014 - Downward Movement and Large Interval Control
12:18 - March 2016
13:11 - August 2017 - Fluidity in Slurs, Paced Arpeggios, Held Notes
17:09 - April 2018 - Crossing Multiple Registers, Descended Landings.
19:44 - August 2018 - Melodic Passages and Descending Landings
21:52 - January 2019 - Crossing Multiple Registers, Descending Landings, Ascending Landings, Dynamic Control, and Tongue Control
23:28 - May 2019 - Upper Register; Ascending Landings and Grasp, Stability in Dynamic/Sound
24:42 - September 2019 - Holding Out Notes; Testing Length of Grasp

By FAR one of the most embarrassing videos of my face....lots of closeups, while having dystonia over the span of several years, while aging, while rolling out of bed, while gaining and losing weight, while going into my mid-30's, and crazy life stuff in general.

Wanted to post this for those who have Embouchure Dystonia. Keep up your efforts...I know it may seem like a long journey, but you can do it! <3 I'm new to editing videos even though I post videos on my blog all the time have patience, will get better over time with practice.

This is the first timeline video I've done of my playing....approx 30 minutes. Please understand, even though I'm comfortable with showing my playing because I feel it's important and for a good cause, it doesn't mean I'm not vulnerable.

There's a reason musicians don't show this disorder upfront and why it's rarely documented thoroughly as such. Auff! 📯💔 Feel free to share though! I hope to spread Musician Dystonia Awareness.

Thursday, November 21, 2019

Flautist Leslie Thompson: Determination to Continue Playing Music After Overcoming Car Accident

I love that they mention body mapping. Many music departments at universities are now offering courses or summer seminars in Alexander Technique, Feldenkrais, and Rolfing.

Happy to see a news article spreading awareness of musician injuries/disabilities, explaining how common injuries are, the importance of health education, and how adaptation is a key component in recovery (this also applies to dystonia).

Last, but not least, it's more than inspiring to see flautist Leslie Thompson share her journey of surviving a car accident and her determination to continue playing music.

She was fortunate to have Andree Martin as her professor during this time, who understands disabling setbacks all too well. Andree is not only trained as a body map clinician (Andovers Educator), but has recovered a great deal herself from focal hand dystonia and has a remarkable journey to share too.

Believe It's Possible


Wednesday, November 20, 2019

Have No Fear and Embrace Life

"I am not afraid of difficulties. It is perhaps easier, and certainly safer, to follow a beaten path, but it is also dull, uninteresting and futile." --Dmitri Shostakovich


Saturday, November 16, 2019

Dr. Keller: Large Study Finds Predictors of Musician's Dystonia

I saw my friend Richard Ware share this insightful article, so wanted to pass it on....hit "continue reading" in order to see full article.

Large Study Finds Predictors of Musician's Dystonia
Daniel M. Keller, PhD

October 09, 2019

NICE, France — A new review suggests musician's focal task-specific dystonia (MFD) often occurs subsequent to a triggering factor, such as a change in technique or increase in practice, and that many patients have concurrent ipsilateral neuropathy, particularly ulnar neuropathy, suggesting it may be an important risk factor, researchers report.

MFD affects 1% to 2% of professional musicians, is an important occupational disability, and can be career-ending. The most common form is musician focal hand dystonia (MFHD), with onset in adulthood at the peak of performance careers.

Less common is embouchure dystonia, which affects woodwind and brass players. Typical treatment with botulinum toxin injections and retraining are most often unsatisfactory.

A review of 2649 case records of performing musicians from health clinics treating performing artists at the University of California San Francisco (1984-1989) and Partners HealthCare in Boston (1989-2015) identified 240 consecutive cases (9.1%) of MFD. Cases were compared with a cohort of 532 nondystonic patients with ulnar nerve entrapment.

Speaking during a group poster tour here at the 2019 International Congress of Parkinson's Disease and Movement Disorders, Christopher Stephen, MB ChB, Massachusetts General Hospital and Brigham and Women's Hospital Performing Arts Clinic, Boston, Massachusetts, reported that "ulnar nerve entrapment had increased prevalence in focal hand dystonia — 30% as opposed to 22% in our whole musician's cohort of 2649 musicians."

In addition, of the 66 patients with MFHD and ulnar nerve entrapment, all but one were ipsilateral. "It's quite a striking finding," he said.

Predictors of MFHD versus ulnar nerve entrapment included male gender and playing professionally (both P < .0001). Predictors of worse outcome included the number of fingers involved with dystonia (P = .0009) and being an amateur musician (P = .0138).

Ten percent of the dystonic cohort had a family history of movement disorders, whereas this was very rare in patients with ulnar nerve entrapment only.

The MFD population was about 70% male, consisted mostly of professional musicians but also 30% amateurs and about 8% conservatory students. The age of onset was about 36 years but with a wide range of 10 to 67 years. About 72% performed classical music, 16% jazz, and 12% other genres.

A side predilection depended on the kind of instrument, for example, piano or plucked strings. MFHD was rare in brass and percussion players.

Of the 215 cases with MFHD, 160 (74.4%) had a pure flexion dystonia, most of them with flexion of the ring and little fingers. Extension-only dystonia occurred in 25 patients, and most of them played woodwinds.

The majority (72.2%) of MFHD patients had reported an associated event prior to developing the condition, whether musical (eg, increased practice, new technique, or a new instrument) or nonmusical (eg, concurrent neuropathy, overuse injury, or emotional stress or trauma).

Fifty-two patients (24.2%) received botulinum toxin injections, with 30% of them having substantial improvement, but most discontinued this therapy due to lack of benefit. Oral medications were minimally effective in treating dystonia in MFHD but sometimes helped treat tremor.

Of the 66 patients that had ipsilateral ulnar nerve entrapment and MFHD, 27 underwent surgery for the entrapment. Most had substantial improvement in symptoms and signs of ulnar nerve entrapment, and a minority had improvement in dystonia.

"So it could suggest that having surgery, if you do find an ipsilateral ulnar nerve entrapment with dystonia...may help some patients have a substantial improvement after surgery, but not in general," Stephen said.

He noted that changing to a different instrument helped some patients, but even then over time dystonia developed with that instrument as well. Just over half of MFHD patients continued to play but were impaired.

After Stephen's presentation, a lively discussion ensued between him and Alberto Albanese, MD, Catholic University, Milan, Italy, one of the leaders of the poster tour. Albanese raised the possibility of better training in technique to avoid dystonia.

"I was thinking that probably appropriate training to some extent prevents future dystonia because I follow the director of the conservatory in Milan, and I discussed with him many times about how to train musicians from the very beginning to try to prevent dystonia," he said.

Although an interesting idea, Stephen said the study involved people who already had dystonia and explored what were predictors of worse outcome. But he agreed that better training may help avoid dystonia. "It may also give them the expertise to be able to still play to a decent level and adjust the repertoire," he said.

"Well, it depends on the severity because they try as much as they can because they love music. So for them to stop is really a problem," Albanese concluded.

There was no funding for the study. Stephen has reported no relevant financial relationships. Albanese has received speaker's honoraria from Allergan, Ipsen, Merz, Medtronic, and Zambon.

International Congress of Parkinson's Disease and Movement Disorders 2019. Presented September 24, 2019. Abstract 1345.

Tuesday, November 12, 2019

Musicians Well: Flautist Julianna Nickel on Focal Dystonia and Brain Surgery

So happy to see you featured Julianna Nickel!!! What I have always looked up to most about you is your straightforwardness when it comes to pointing out the truth/facts about focal dystonia, and for always seeing both sides of an issue clearly. Thank you for continuing to share your journey! 🎶💕

Friday, October 25, 2019

Philip Smith: On Upbringing, Trumpet, and Focal Embouchure Dystonia

Thank you to Alison Pesacreta (my twin sister) for sharing this! I can't tell you how many recordings I had to listen to of Phil Smith while growing up because my sister started playing cornet in the 4th grade in 1993 and loved playing along with a tape cassette of duets where he played the bottom part on side 1 and the top part on side 2. This was way before his concert studies series or hymns...don't think they publish it anymore. She actually got him to autograph the music years later through a friend and he was surprised to see it. Anyways, from then on she listened to practically every recording he came out with and I continued hearing him throughout college on a daily basis as well. His sound definitely influenced her and I hear so much of his style in her playing.

That's why it was very saddening to hear of his diagnosis with Focal Embouchure Dystonia 5 years ago. He is a legend and one of the greatest of all time.

I wanted to share an excerpt from this interview where he speaks a little about his journey. I definitely can relate here as so many with FTSED do too.

He is correct when saying to be honest there is no easy or simple explanation of what causes focal dystonia. It doesn't only occur in musicians but other fields that require high levels of repetitive accuracy, repetitive practice, and refined skill over a long period of time.

It really does feel like it happens over night and as much as you try to re-trace your steps, nothing adds up. That's because it has to do with our brain signals/ just never see it coming or crashing, especially when you're at the top of your game.

Everyone wants a simple explanation, but those of us who have lived with it for more than 10 years or even 5 years will tell you it's not like some light bulb hasn't turned on or like we're missing the answer staring us in the face or like we haven't tried everything.

Just like trying to regain the ability to walk after a stroke, knowledge does not equal understanding. Knowing how to play your instrument like a pro does not help or mean you're immune. It's not a "mental issue" or "emotional issue" or "bad habit/lack of healthy playing issue"'s a loss of a highly refined motor skill/brain pathway. Knowing how to walk your whole life doesn't mean you understand how to walk after losing that ability, nor even grasp how much work rehabilitation is. Some do regain close to full control, while others recover to varying degrees, and some struggle with it severely, and you can't put a time limit on recovery. However, the new pathway dug is not as natural as the original.

Phil says: Four years ago, I got hit with it, and I basically couldn’t play a note. I have had to re-teach myself how to play over the last four years, and quite honestly it has been hell.

I wish I could say what triggered it, but I don’t know. I have had people say to me “I can’t believe that you lost your lip” or “I can’t believe you lost your nerve”, and it was neither of those things. Something happened that took what I knew and wiped it off the map.

I have had to re-teach myself what to do, and in some ways, I have needed to be more ‘fundamentally’ focused, and in other ways I have had to erase everything that I thought I knew as an experienced trumpet person and approach the instrument like I am 7 years old. That has been difficult!

Tuesday, October 22, 2019

Monette Mouthpieces: Brother-in-Law visits the Monette Factory

Glad someone finally captured Mario Pesacreta's playing on camera! Now just need to capture Alison Pesacreta (my twin sister)...I know she tried some mouthpieces too! Happy Birthday to the best Brother-in-law. Miss hearing you guys play! 🎶🎺🎂🍻 (Go bears 🐻 and hi Jason) #UNCO

Here's Mario from Centralia WA visiting us on his birthday! Mario went to school back when with Jason in our office... we hooked him up with new PRANA RESONANCE mouthpieces today... he was all over them! Thanks for the visit Mario... have fun with the new mouthpieces!

Thursday, October 17, 2019

Pianist Andreas Eggertsberger Latest Album: "Dystonia"

Congratulations Andreas!!! You sound superb!! Excited your album Dystonia releases tomorrow. First of its kind ever and immensely needed. You give so many hope! Much #respect 🙇🙌🙏🎶🎹

Here is a review of his album:

The Backwards Brain Bicycle: What Having Musician's Focal Dystonia is Like

This is what it's like having Musicians Focal Dystonia. Except after 20+ years of daily practice, performing, and refining your skills to a high degree, you can see why it's significantly worse when the brain pathways get even slightly crossed; sensory/touch goes haywire and motor control goes out the window.

All those years of learning become our enemy and everything must be deprogrammed and reprogrammed and even though you can adapt and modify, it's never quite the same or as smooth as the old pathway that was dug.

The hardest part is letting go/stopping your brain from yelling at your body, "You're going to fall!! I must do something!!" and thus it keeps trying to resort to your default control/old pathway that no longer works. It takes tremendous work to build a new pathway, a ton of failing and relapses, and for some it seems impossible or takes years because your body and brain lack enough plasticity to overcome the damaged circuit. Also everyone is affected to various degrees and it's hard to gauge severity levels.

We really don't know how deep the rabbit hole is, so that's why I'm against those who make the notion that they have the one and only cure, or a one-size-fits-all formula to overcoming the disorder. One way of doing things won't work for everyone, and not everyone can overcome it so easily or within the same time frame. Rehabilitating is an individualized process. And a true cure means it can be scientifically tested over and over again with a proven 100% success rate in each and every individual.

Auff! Frustrating to say the least. This comes very close to a great example of what it's like having this disorder. I know there are a lot worse things in life, but when it is your livelyhood and a part of who you are, it's catastrophic losing your ability to play. 💕

Monday, October 14, 2019

Flautist Michelle Sung: Overcoming Focal Hand Dystonia

A testament to Dr. Joaquin Farias work in helping musicians overcome Focal Dystonia! Congratulations to Michelle Sung on overcoming Focal Hand Dystonia and for sharing her story below! Not only is it inspirational, but I cannot express how relieving it is to not feel alone in wanting to break the stigma surrounding the disorder and how truly important it is. She says, " Trust me, it takes a lifetime to get past someone suggesting you are crazy." Yes, and sadly those of us with the disorder end up hearing it most from our friends/colleagues, and teachers that we feel we can trust. It's quite devastating in the beginning stages not knowing where to go or who to talk to. I'm so happy to hear Michelle play again and will share her story/good news wherever I can!

Michelle says: It’s taken me almost two years to share a diagnosis that I’ve been struggling with. A few days ago, I gave my first performance since I was diagnosed with Focal Dystonia.

I woke up one day, unable to pick up or hold my flute, without my hands shaking and cramping. Within days, I was not able to fully control my hand movements anymore. Playing a scale or even simply holding my flute suddenly seemed impossible. I began seeing doctor after doctor, transferring from one specialist to another. Each doctor I saw gave me a different diagnosis. It ranged from them believing I was suffering from seizures to misdiagnosing me with Early Onset Parkinson’s disease. Some doctors that completely had no idea what was happening to me, blamed it on my mental health, suggesting that it was psychological, or “all in my head”. (Trust me, it takes a lifetime to get past someone suggesting you are crazy!) Finally, I was diagnosed by a neurologist with Focal Dystonia – a movement disorder, a deviation in my cerebellum/the motion control center in my brain. My doctors then suggested me to quit flute and pursue another non-performing career. I was told a cure was “not possible”. My most optimistic doctor said a full recovery would be a “miracle”.

For as long as I can remember, I introduced myself as a flutist and that was suddenly all destroyed by focal dystonia. Completely lost in life, I dropped out of grad school, struggled to keep in touch with my friends, and felt absolutely worthless. I didn’t talk to anyone about it, out of frustration that nobody would understand anyway, and out of fear of being judged. I didn’t want to be labelled with a brain disorder.

Focal dystonia is often misunderstood as an overuse injury but it is actually classified under neurological movement disorders. One neurologist once explained to me, that the same part of the brain affected in patients with Parkinson’s was damaged in my brain. It has nothing to do with tendinitis or a nerve injury. Neurons fire incorrectly and somehow mess up the wiring in the brain, as one loses the ability to control certain body movements. The cause is yet unknown, but studies have shown that physical trauma or shock to the brain can trigger focal dystonia.

These past two years went by in a flash, while at the same time seeming to have taken decades but I finally feel comfortable and confident enough to share my experience, in hopes to raise awareness. I am still in disbelief myself, but I am beyond happy to share that I have fully recovered from focal dystonia, despite the fact that doctors told me it was impossible. I am so grateful for all the people I have met along the way for not giving up on me, when all signs pointed me to do so. Special thanks to Alex Klein and Joaquin Farias. By being vocal about focal dystonia, I hope that it can start to break away from the stigma that it cannot be cured and more people can become comfortable to openly talk about this, or any other disorder, that is frowned upon. If you know of anyone that is suffering from this disorder, please send them my way. I would love to get in touch with them and share how I recovered.

Thursday, October 10, 2019

Back to Work...

1st day of snowfall this year on campus. Glad I headed into work early. #University of Denver ❄ #NewmanPAC #DU

Monday, October 7, 2019

Dr. Perlmutter Named Scientific Director of DMRF

I just had to come back on here to say Congratulations Dr. Perlmutter! A great neurologist and very kind, humble, and intellectual professional.

I am honored to have participated in his research on embouchure dystonia a few years ago and speak with him in detail about ongoing studies and brain surgery.

He helped refer me to one of his former research partners/neurologists here in Denver. Also documented/recorded my neurological examination and blood work for the Dystonia Coalition while there.

Definitely deserves this esteemed position as scientific director of the DMRF. Coincidentally every June on my birthday I've been asking for donations to DMRF research.

Sunday, September 29, 2019

Colin Williams: On Muscle Tear Recovery

A wonderful post by trombonist Colin Williams who teaches at the Manhatten School of Music. He shares his experience overcoming a major embouchure injury - muscle tear. Please read the comment section full of questions, informative answers, including links. What I love most is the respect shown for Lucinda Lewis and the late Laurie Frink; both trailblazers in helping others in the area of recovery and injury knowledge. My heroes. Not to mention Dr. McGrail and Dr. Vander Kolk who have helped several musicians via muscle tear surgery when out of all options. ❤


Monday, September 23, 2019

Video Recording: The Subtleties of Focal Embouchure Dystonia

Video 1: The subtleties of FTSED. I'm testing/practicing holding out notes (straight muted) 
Video 2: The subtleties of FTSED. I'm testing/practicing holding out notes (straight muted)

Monday, September 16, 2019

Helping Others On This Journey

We're all in it together...

Mountain Reflection

"One day, the mountain that is in front of you will be so far behind you, it will barely be visible in the distance. But the person you become in learning to get over it? That will stay with you forever. And that is the point of the mountain."

~ Brianna Wiest

Art by: SpaceFrog
Blue Mountain Reflection

Wednesday, September 11, 2019

September 2019: Health Update

I don't think I've spoken about this on my blog because it doesn't really relate to FTSED. However, I thought I should share some news.

These last two years have been pretty tough on me physically. To make things short, in May of 2017 I started experiencing painful symptoms and found out I had miscarried. Yet the pain continued to progress....which correlates to what's going on now (posted much further below).

This previous summer I had my gallbladder removed, and due to all the medical tests leading up to it (that I haven't been able to do thanks to not having insurance foreverrrr) I found out I am dealing with a slew of several things.

First of all, since I had open heart surgery as a child, they had to do an ultrasound to make sure it's doing okay before I undergo surgery. They basically told me that I need to majorly improve my health or it won't be too long until my heart needs a stint or some type of work. They didn't say anything in particular was wrong but that this is something I needed to work on based on my overall health and the several things affecting me.

To make matters worse I showed up as anemic. And during surgery I was having troubles breathing....came to find out I have sleep apnea.

Then in late June I went to a physician to check out my reproductive health since all of this physical pain I've been in since 2017 finally got so out of control it got in the way of me being able to do anything. I stilled showed as anemic, and after doing a couple more tests and an ultra sound, turns out I had 2 large masses in my uterus. Due to my history, health, age, and ethnicity, that I am high risk for ovarian cancer. They needed to perform a biopsy. Well this took forever to get done because I had to switch providers and clinics, etc. So in July I was in so much pain that I begged for something to help lessen my symptoms. Was put on a different dosage of birth control, but it only lessened one of the symptoms, but for the most part I was still suffering, and started to experience vertigo. Then they started me on a different type of hormone drug that provided more progesterone and I cannot express how much my behavior/personality has changed. Although it's helped shave off 3 days out of the month I'm not going through this craziness.

Fast forward to September/now, I was finally able to get the biopsy this week. I will hear back soon as to whether anything is cancerous. The hysterectomy surgery is already in the books for late November. Still have some tests to do before then, but looking forward to not being in physical pain anymore. For now, I can only hope that whatever is happening isn't anything worse. Will update when I can.

All-in-all it's been extremely stressful and emotionally exhausting. I won't go into detail here, but just happy things are getting done and this will soon all be over with. That's all I've got for now. I'm holding onto as much hope as I can.

- Katie

Monday, August 26, 2019

New Beginnings...

I've been doing a great job of keeping my blog going this year. More so than other years. However, recently I was hired by the University of Denver Newman Performing Arts Center in Music Education Outreach and Engagement and excited to dive into my work there. In other words, I'll be pretty busy and not sure how much upkeep I'll be doing from here on out, unless there's a holiday break (I'll write then). I love my job so far and I'm just as passionate about it as I am about my focal embouchure dystonia blog. Thank you to those who have been following! I am still doing a lot of writing in progress for other publications, and will write more about that soon. I also have been working extremely hard to fit in all my spare time on exercise and my health (thus one of the pictures is of red rocks where I hike and climb stairs). I've been dealing with some pretty difficult medical setbacks and it's been a crazy summer filled with hospital visits, appointments, trying to find the right insurance provider, and affording it all. Hopefully I'll be back here on the blog soon. Until then, I hope everyone has a great start to their (academic) year!

Wednesday, August 21, 2019

Standing with the Great or the Broken

Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 2)

Part 2...I love Musicians Health Collective. I'm a huge fanatic. <3 What a great interview with saxophonist Chelsea Shanoff, and what bravery for her to speak about her surgery and loss of hearing afterwards. Completely support her and hope her recovery goes smoothly. I'm so glad she also addressed the need to be open:

"Recently there has been more awareness surrounding musicians’ hearing health and the shocking number of musicians who have some kind of hearing loss, whether from the hazards of being a musician or from something unrelated, like illness. (Side-note: Did you know saxophonist Chris Potter has SSD from a condition called Meniere’s Disease?)

I think it is great to talk about musicians’ health in a broad sense, but until we actually are able to talk honestly about the specifics of our own struggles, we still have a ways to go in educating others. Recovery from any kind of brain injury or surgery will look different for everyone, but in the case of my condition it involves the brain adapting and habituating to the loss of the balance and hearing nerve on one side."

Tuesday, August 20, 2019

Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 1)

Chelsea talks about her jaw problems while playing her instrument and the eventual findings of a tumor causing it...

Why it's important to get diagnosed!! I know sometimes it takes forever to find the correct specialist and diagnosis, but at least get the big stuff out the way; MRI scans, blood work, nerve conduction tests, etc. Ruling out anything more severe is the best thing you can do. Nothing wrong with precaution when experiencing any abnormal symptoms. 👨‍⚕️🔍💙

Sunday, August 4, 2019

Musicians' Well: Kristin Davidson on Dystonia: Another Kind of Recovery

From Musicians' Well website: Horn player Kristin Davidson shares details on her journey coping with Focal Embouchure Dystonia. Thank you Kristin for speaking out about your life, family, and love for music!

"...After injury you will become a completely different player....I would add that it is also true that in order to sustain yourself, you have to become a different person entirely."

Wow. That statement hits close to home. Can't tell you how deeply this type of setback changes a person. What I would give to be the former me - not just as a player, but as a person too. 💔

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

What a great read over Task-Specific Lingual Dystonia!!!

Note: I can't help but say, "Of course Focal Task-Specific Dystonia is associated with doubt about it!"

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

Wednesday, July 31, 2019

Chiropractic Work: Neck Traction

Following up on my previous post about the chiropractic work being done on my neck. In the last post I mentioned how I purchased a years worth of chiropractic sessions.

A few months ago my chiropracter said my upper spine/neck needed additional support outside of the sessions; not just stretching the spine manually, but mechanically too. The spine in my neck is too compressed (including my jaw) and they don't know why. He said I needed to buy a cervical neck traction device. Reminding you I've had severe neck problems since a teenager.

I ended up buying the inflatable device (very effective and only 17 bucks) rather than the "craddle-sling" you see most people use. I also bought a professional back massager device as well.

Anyways, the point of traction is to pull the head up and away from the neck, stretching the muscles and ligaments around the vertebrae of the spine and expanding the space between the vertebrae. This gives the muscles the opportunity to relax and for pinched nerves to release further.

At first I thought, "This is like a neck pillow you buy for traveling. How is it different? And will it even make that big of a difference?"

I can't even begin to explain how much it has helped me! It's completely resolved my jaw compression on the right side and I no longer experience spasms at rest or accidentally biting my tongue. I also breath better when I sleep because my neck and shoulder muscles are completely relaxed.

After I had my gallbladder surgery I didn't use it for a couple weeks and I immediately started to feel my neck muscles starting to pinch and pull deep down.

Nothing makes you realize how much pressure gravity puts on your body than after experiencing chiropractic work. I keep thinking, "How have I survived without this?"

The only other time I felt this much relief was when I had 10 botox injections in my cervical muscles when 14 years old to release a severely pinched nerve that they weren't sure was cervical dystonia due to similar symptoms.

I know chiropractic work isn't for everyone, but I just needed to keep up-to-date with what has been helping me. This in return has helped me with my playing as well!!! I feel way less restricted due to my jaw moving more freely. 📯🎶

Hearing Your Former Self Play

I had my ipod set to random while working out and it started playing some classical pieces. I was going to change it but listened instead. For a while I thought, "Oh wow! I really love the principal horn player. What a gorgeous sound...who is this?!?!"

I thought it might be a european player, but I looked down and it's me. How embarrassing. Only has happened twice in my life - where I didn't recognize my own playing. Must have not heard myself play symptom-free in years. haha!


Wednesday, July 24, 2019

Practice Time with Family!

Allie (my twin sister) and I are practicing at our old stomping grounds - The University of Northern Colorado, UNC! So many memories here!! 💕

Saturday, July 20, 2019

The Point is to Understand

Similarly professional and advanced musicians know what it takes to play at their level/caliber, but very few understand career ending setbacks because it requires experience - having gone through the same devastating injury/disorder in order to help others.

This goes double for those who help others with focal dystonia because research has shown that the most effective rehabilitation strategy so far (besides DBS/brain surgery coming in at #1) has been retraining the sensory and brain pathways in order to restore motor skills. This is no easy walk in the park.

Who understands the process better than musicians with the disorder and professional neurologists who invest years of research into studying it? A neurologist who is dually a dystonic musician and medical professional would be highly sought after if one where to exist.

Because there is no known cure means that treatment is symptomatic. Just because there isn't a cure or etiology doesn't mean musicians with dystonia should ignore their symptoms.

I say this because I've had several brass professionals and teachers tell me and other dystonic brass players to ignore the symptoms, not get caught up in addressing individual symptoms and instead focus on musicality and air. There are so many things wrong with that advice I could write a book!

That's like going to the doctor and telling them, "I don't know what caused this cut on my leg, so please don't treat the symptoms/bleeding!"

There are a number of things that could have caused the cut, but what really matters right now is visually obvious. Even if the bleeding isn't successfully stopped all at once, we must attempt to and go from there.

If you look at any disorder or illness that doesn't have a known cause or cure (there are a lot), the only solution is to focus on alleviating the symptoms! This is important because finding ways to decrease the various symptoms (even if not a cure) leads to overall improvement and in return this increases the person's quality of life.

Treatment is not just about finding a cure. Treatment involves overall well-being of the afflicted person and giving them the tools to reduce their symptoms as much as possible so that even if they can't completely overcome it, they can come very close. In fact, enough to manage it and re-establish their love of playing again. It gives them hope. Most importantly they witness progress and it's through this process of understanding we learn more about how this complex disorder works!

We can't just throw everything we know about it as a neurological disorder out the window just because there is no cure yet. I say this because again, I have been told (along with other dystonic brass players) by professional brass players and teachers that due to there being no cure we should dismiss it as a neurological disorder (as if doctor's randomly labeled it focal dystonia for no good reason and none of the research and evidence means anything).

Do you think telling a musician with dystonia that it's all in their head is going to help when you don't even know anything about the disorder, have never had it, and you're just making assumptions and believe you're right because you've evading injury or due to your status/reputation makes you more qualified to give advice?

Let me tell you the quality of skill level and good habits in a musician does not make you less likely to develop dystonia or avoid an injury.

In fact, you are more prone to developing focal dystonia if you are healthy and at a high skill level - e.g. an established professional musician, advanced or highly skilled amateur, classically trained (e.g. a classical musician), natural, fast learner/have always excelled in your studies and playing, in leadership positions, at the height of playing level, male gender, middle-aged, have writers cramp or it runs in the family or dystonia does.

Telling a musician with dystonia to ignore the symptoms is ridiculous, or to stop retraining with another dystonic musician just because they are not a doctor is illogical (how the hell else are we going to gain any insight or move forward?). Equally it's unfair to tell them that no neurological rehabilitation method is worthwhile just because it's not a definite cure. The same goes for telling them to not try standard medication prescribed (for some it actually helps). And more aggravating is when others tell musicians with dystonia to not trust neurologists.

Yes, there are few neurologists who really understand it in-depth, but the ones that do are on our side and researching it because they want to help us. We must not forget that. We need them, and they need us in order to find answers.

By telling musicians with dystonia to avoid seeking the help of others who have it, avoid neurologist, ignore the research, ignore the symptoms, and only trust professional musicians who have never dealt with an injury/disorder is highly presumptuous, misinformed, dangerous, and just plain stupid logic.

Yet this is how things continue to be. Can't tell you how many times I've been told to go talk to "so-and-so" (insert name of random professional musician who knows nothing but how to give advice on mechanics, technique, breathing, or who tells me it's all in my head). It may be out of good intention but it's more harmful than helpful...and disappointing.

Stop with the assumptions, bad advice, and not giving musicians who actually have experienced career-ending setbacks and understand the situation credit.

Just like the treatment of most other neurological disorders, focal dystonia treatment must be individualized and requires great depth of understanding; not only from a medical standpoint, but from the viewpoint of the afflicted. Therefore, both sides (neurologist and dystonic musicians) must come together to create a holistic and cohesive approach. 💕

Friday, July 19, 2019

Thank you!! 500 Followers!

Today I got a notification that I reached 500 followers on my facebook page Living with Embouchure Dystonia!

Although I started my blog in 2011, I didn't start my facebook page until six years later. At the time I didn't keep it updated because I don't like attention; I'd rather be found when needed (like a library book) than posting all my stuff up front in a more mainstream manner. Thanks to the suggestion of a highly encouraging friend, it wasn't until this last year I really started to utilize the page for sharing my blog posts and I started a website.

I know that this complex and mysterious disorder (Focal Task-Specific Embouchure Dystonia) scares serious brass and wind musicians since most avoid speaking about the subject of injuries, disorders, and setbacks in general.

It is no surprise that several (but not all) musicians who have never been through a major debilitating setback refuse to believe such a disorder exists; many don't believe you can get injured by the simple act of playing music; that setbacks can be altogether avoided if you have healthy habits and proper mechanics; and that if you end up injured or develop a disorder then you are doing something wrong....
......which all 4 of these beliefs are false, and to be honest - ignorant. You can't label everything as "bad habits."

Sports medicine professionals and professional athletes who have gone through injuries or who have dystonia would wonder what is wrong with you if considering any of the above as the "problem and answer" to majority of setbacks that happen.

Therefore it makes me feel hope knowing that there are a handful who are able to look past the fear and instead support the understanding of this complex disorder and know how important it is to break down these false misconceptions surrounding musician injuries and disorders. The gap between the medical field and musicians must be bridged. It's never going to happen if musicians keep avoiding the subject and lack education on it.

Musicians with injuries and disorders don't ask for pity (it's not like we have leprosy), but instead respect and understanding in knowing that setbacks are not easily avoidable, resolved, or a simple matter that can be summarized and labeled as the fault of the musician only/themselves.

Many don't speak out about their injuries due to fear of being judged, damaging their reputation, or because they can no longer put up with the disappointment in their peers and colleagues who cannot or refuse to understand their situation.

And often times peers and colleagues don't value an injured musicians perspective and deep insight because they hold a false (and harmful) belief that "injured musicians (even if a close friend or long-time colleague) must not know how to take care of themselves and need the advice of a non-injured musician who has evaded injury....otherwise they would have never been in this situation to begin with".

Thank you again to those who have always been supportive and open-minded. I will always continue to write for those who have it, those who want to understand it (from a person's perspective who actually has it and devotes their life to understanding it and overcoming it), and for my own self and wellbeing.

I know this wasn't the most heartfelt thank you, but please know it really does mean a lot. You all are making a huge change in the direction of the future for those who do end up injured or develop a disorder (believe me, no one ever sees it coming or expects to end up in such a situation...NO ONE).

It's important to keep the doors of communication open, as well as minds! 😊 ❤️

- Katie Bergløf

Friday, July 12, 2019

Inspire and Awaken Others

I love writing about taboo things like musician injuries and musician disorders; more specifically focal embouchure dystonia and raising awareness....god forbid it ever happen to you someday. No one ever imagines it could happen to them especially when they feel in their prime and it comes out of left field. Wouldn't wish it on anyone.

It may not seem as life-threatening as a lethal illness, but losing what you love, your calling, your career, greatest pursuit, and what gives you's as painful as losing a loved one, it leaves you as helpless because it is a form of degraded mobility, and it can deprive one's life of meaning...and yes, even some find it hard to keep the will to live. Nothing can fully replace that loss. Don't tell them to try to move on with a new instrument or profession.

When your entire life revolves around something and you've invested years into it, disassociating is impossible for some. It's a loss of self and identity too.

That's why I continue to write. So I can relate to those who are going through the process and understand how truly frustrating and debilitating it is on every level during the aftermath and grieving process - physically, emotionally, mentally, and even spiritually. It is no simple matter.

I've never been one to suffer in silence just for the sake of reputation, nor am I one to go out without a fight.

That's why my passion and very protective side comes out when standing up for those who have the disorder and are ignorantly labelled or told they are musicians who are "simply dealing with bad habits or performance anxiety," when that couldn't be farther from the damn truth! 🔥

It's not so much that I love what I do (it's not like I chose to have focal dystonia), but I love seeing that fire in other's eyes again when they say, "I can overcome this. I'm not giving up. I can pave the pathway one step at a time."

That's all that really matters. Helping others and making a difference even if in the smallest way. I'd rather be helping others stand up after they fall than competing in music politics. I will say I don't miss the competitive arrogance or egos you see in several musicians, even though I miss the act of playing, hearing my own sound, and performing alongside friends and colleagues the most.

I don't like victimizing myself and prefer to view myself as a survivor, but I know what it's like to grieve and the waves will come and go. Therefore, I want others to know there's nothing wrong with that and it's okay to mourn, to express your highs and lows because that is part of the process. <3

Thursday, July 11, 2019

Slow Progress...

#livingwithembouchuredystonia #musiciansdystonia #handdystonia #embouchuredystonia #focaldystonia #taskspecificdystonia

Saturday, July 6, 2019

Britannica: Muscle Disease Pathology

This is one of the best overviews of pathologies of muscle disease, disorders, and weakness. Written by Walter G. Bradley, Richard Humphrey, Tudor Edwards, and Ronald A. Henson. It's well written so that most who are not medical professionals can follow. I hope you read it! The section over muscle nerves and neurons explains a lot about how weakness is not simply a result of overexertion. I really wish all of this was taught to musicians as a part of their education. Not only is it important, but I find it rather fascinating in general.

Tuesday, June 25, 2019

The Role of Mentality or Focus in Rehabilitation

This is what I practice the most in rehabilitation. You must be mindful of your body and the signals that are being sent. Use your senses and simply observe.

Being present and observing what your embouchure is trying to tell you helps navigate throughout the complex symptoms so you can find and reduce areas of tension in order to start working on reprogramming your motor skills and regain sensory feedback.

Being aware of your body in a mindful way is not a negative thing! Your mind can't be focused on negative thinking (i.e. the way things "should" feel, the way things "should" sound, the way things "should" look), and equally it also can't be focused on musicality or just playing "through" things.

When your symptoms are severe, especially during the height of embouchure dystonia, you're not at a stage to even start doing that. If you do, you risk getting a secondary injury on top of your disorder. You can't force things, so it makes sense why a musician with a disorder or injury can't be focused on normal playing methods or tactics (i.e. focusing on phrasing, tone color, breathing, mechanics, technique, singing through or playing through things).

You must be aware and in the moment. Be fully present of what is happening and not panicking. Observing (I like to use the word "exploring") where you actually have functional brain signals being sent and helping those areas bleed over into the unstable areas of your dystonia (sounds easy but believe me it's not!)...this is where you find leverage and begin regaining your playing abilities and a sense of dignity.

This is what I mean when I talk about changing your mindset so that you can start focusing on what is really important - the neurological/physical symptoms in your playing.

If you are lost in the realm of emotions, musical-esque notions, expression, or advice of others who don't have the disorder, it's going to be impossible to see any major progress (unless you are 98% recovered already and can focus on that type of stuff).

If you struggle with focus, one way to engage mindful observation is to just breath and empty your head by listening to the white noise in the room, listen to the clock ticking on the wall, feel the sensation of your feet touch the carpet. Then try to visualize blowing on hot cocoa and start playing (or mouthpiece buzzing or freebuzzing). Remember you are simply observing and exploring what your dysfunctional embouchure is telling you....really get to know its tendencies and reflexes, even if sometimes you can't get a seal or sound out at all. Keep noting your observations. This will help you later with adjustments and modifications as you go along.

If you can learn to love the act of doing this and accept your sound and state of disability in a hopeful-survivor and explorative type of way, that's going to take you far in recovery.

Thursday, June 20, 2019

Berglof: Latest Embouchure Dystonia Video, May 22nd 2019

(If the video doesn't work here, you can also view it on my facebook page: ). Originally posted this on my facebook page on May 22nd, 2019!

This is a really good example of what I mean when I tell people that during the onset of my symptoms my Embouchure started to move weirdly, as if I were chewing food or a huge ball of gum while playing. You can definitely see it in the chin muscles as they flex and how the corner muscles collapse involuntarily at times.

My first symptoms where not spasms....that's why I really try to explain to others that it's not just "the shakes". My first symptoms where a tiny air leak, then loss of control of larger movements/intervals, then progressed to loss of ability to decrescendo (embouchure started collapsing only on descending passages and on decrescendo), then after working on low brass playing for a few months and taking time off...then loss of control of smaller movements and spasms started setting in.

Anywhoo! Practiced a little bit today, but you can tell I'm a little frustrated. Overall things are feeling more stable, but now hard to move in certain ways...not due to loss of sensory/touch as much though.

The best analogy I can give is that Embouchure Dystonia usually feels like you are walking on eggshells or a bunch of wires that could zap you with a spasm at any moment, as if you are trying to walk on thin ice....but now I don't feel that way at this stage. Now I'm to a point where it's the opposite; like I'm trying to walk in deep mud and my shoes keep getting stuck.

The smaller muscles movements are more stable, but the larger ones are really being stubborn and not flexing in a natural way....they are slow to catching on. Instead of overshooting due to hyper muscle movement, it's sticky due to overly exaggerated movements/formations....if that makes sense? At least it feels that way. Still a lot of exertion or effort, but in a different way.

Thanks for watching and understanding! Sorry again for poor audio quality (also playing with a straight mute). 😊💕

2019: Upcoming Research Looking for Musician's with Dystonia

1st opportunity...

This is a great opportunity for guitarist with focal hand dystonia to participate in actual retraining research!! More studies on rehabilitation strategies is so important!!! Don't miss this rare opportunity.

Recently I posted/wrote a blog post over Dr. Serap as a highlighted medical professional and professional musician. You can find it on my FB and Living with Embouchure Dystonia page and my blog. 

"Retraining Strategies in the Management of Guitarists’ Dystonia

Johns Hopkins University is conducting a study on guitarists’ dystonia retraining strategies and effectiveness. Researchers from the Peabody Institute and Department of Neurology are looking for guitarists with dystonia that affects their right hands as well as healthy guitarists who play classical and fingerstyle guitar. If you are interested in participating in this study or for more information, you can directly reach Dr. Serap Bastepe-Gray at 443-939-5578 or at"

2nd opportunity...
Research Seeking for Musicians with Focal Dystonia

We are a neuroscience research group from the Massachusetts General Hospital Institute of Health Professions. We are recruiting musicians diagnosed of focal hand dystonia or adductor spasmodic dysphonia (laryngeal dystonia) to understand how dysfunctional brain networks impact involuntary movements. MRI and transcranial magnetic stimulation (TMS) will be used to measure brain activation and networks over two visits. Your contribution will help researchers/clinicians improve understanding of this disease and assist treatment development!

Location: Massachusetts General Hospital - Martinos Center for Biomedical Imaging (visit 1) and Voice Center (visit 2).
Time: 2 visits over two days. 2.5-3 hr for each visit.
Compensation: $200. Travel expense coverage up to $500 based on distance.
Funding source: National Institutes of Health (NIH)

Study contact: Yi-Ling Kuo,

Wednesday, June 19, 2019

DMRF Birthday Fundraiser

I probably should have shared this on my blog and on my facebook "Living with Embouchure Dystonia" page, but didn't have time. I'm happy though that despite my lack of marketing the small fundraiser, I was able to raise $57 dollars for the Dystonia Medical Research Foundation (DMRF). I know it's small, but it counts! I couldn't be happier. Hopefully next year I can help raise more! :) Thank you so much to those who helped out. Here's the original posting:

For my 35th birthday this year (been 10 years since diagnosed with Focal Embouchure Dystonia), I'm asking for donations to the Dystonia Medical Research Foundation. I've chosen this nonprofit because their mission means a lot to me, and I hope you'll consider contributing as a way to celebrate with me. Every little bit will help me reach my goal. I've included information about the Dystonia Medical Research Foundation below.

The mission of the DMRF is to advance research for more effective treatments and ultimately a cure for dystonia, to promote awareness and education and to support the well being of dystonia affected individuals and families.

Although Focal Dystonia affects a small percentage of musicians, there is a larger amount of general Dystonia cases which are more severe and degrade people's lives severely. It truly is a complex and debilitating neurological disorder that comes in many forms.

The DMRF also oversees the Musician's with Dystonia Foundation started by former professional horn player Glen Estrin and neurologist Dr. Steven Frucht.

Thank you for any support! 💜💙💜💙💜💙