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 do...no 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

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

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."

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.

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747630/

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.

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 so...wow!!! 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: https://www.karger.com/Article/PDF/85633)....but 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:

https://www.hbeonline.com/single-post/2019/11/01/Benjamin-Julian-Montreal-Listen-Collaborate?fbclid=IwAR2rBuXkzGnJpW9k4LJz89FUtpW_rqhdbzuBhEg6btzlXSBCv1HJPHGqcJo

(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 ....so 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.

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

💕

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

 

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.

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! 🎶💕

MHC: Beyond "You're Doing it Wrong" and Overuse

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/wiring....you 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" ....it'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!

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!

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: https://www.pizzicato.lu/andreas-eggertsberger-schubert-und-schumann-spontan-und-empfindsam/?fbclid=IwAR3hNVNmKH44-Y5U6l26RkgVWn52Q7OgttZni5umrhmFmRHLAMDHdHguWZA

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. 💕

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.

Back to Work...

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

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.

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. ❤

 

Never Give Up!

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)

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

Horn Players with Dystonia Group

Recently I started a facebook group for horn players with dystonia, you can find the link here:
https://www.facebook.com/groups/frenchhorndystonia/

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

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!

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."

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. 👨‍⚕️🔍💙

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. 💔

https://www.musicianswell.com/stories/2018/12/27/kristin-davidson-on-dystonia-another-kind-of-recovery?fbclid=IwAR3oARmXskbfYA0xJBvloNbCdpo440VrWRr_sgCJj-mw8UNWLugXsqEuiUY

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 occupation....no doubt about it!"

https://www.frontiersin.org/articles/10.3389/fneur.2017.00649/full?fbclid=IwAR0zsxluSQs4JW9a0iAfXxmm0JU5jfJjGSa5vAZ1-CuI8fN11Yj2AnJT94w

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

Expectations and Honoring Progress

Same goes for recovery...

Musicians' Health Collective: Does Every Movement Have to Have Functional Benefit?

I loved this article by Musicians' Health Collective!

http://www.musicianshealthcollective.com/blog/2018/7/8/magical-thinking?fbclid=IwAR0COxT_fPO039pbWxXkexRPzpANwse521gzR3tCFa3I6aYvGPmihAxwqmY

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!

📯📯📯📯📯📯

First Steps in Recovery

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!! 💕

Contribution

💙🎶💙🎶💙🎶💙🎶

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. 💕

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

The Mysteries Surrounding Dystonia

One time I had a non-dystonic horn player say to me, "You shouldn't focus on the symptoms, but instead on the root of the problem. The symptoms will just distract you. Let go of the negative chatter and destructive thoughts, sing what you want to hear and just don't think about it."

First of there are many flawed notions in this statement. The first implying that they know the root cause of focal dystonia, secondly that the cause is the same as the cure to overcoming the disorder. Third, they are implying that the symptoms are not important to address and there is no need to focus on them in order to overcome the disorder. Fourth, they are making the notion that the symptoms are nothing but a distraction and dangerous to focus on. Fifthly they are assuming our thoughts are nothing but negative and destructive. Lastly, they are implying that dystonia is not a neurological disorder despite the research proving otherwise.

(A symptom is subjective - experienced by the person, A sign is objective - visible to others/outside the self).

"Treat the patient, not just the disease" - just because there is no known cure, doesn't mean the person can't be treated and the symptoms addressed in a way that it can be reversed to an extent. Just because there isn't a cure, doesn't make attempts to address the symptoms not valid. Physical rehabilitation or retraining has been the most effective and most see improvement, and a small handful come close to a full recovery. Addressing the symptoms can help improve and maintain functionality and the quality of life of the musician." 

I am supportive of medical professionals and neurologist who research musician's dystonia, but like in most of the medical field, there are several patients that get diagnosed with diseases or disorders that have no cure and handed a list of medications or treatment options, but seldom is there an understanding of how to care for the patient....and this is not the doctors fault....addressing patients who have something with no cure and medication doesn't work that well, is no easy walk in the park, and all patients require a highly individualized plan if really making an effort to help them.

That is why I always tell others who have embouchure dystonia, seek out someone on your instrument who has been through this...try to find as many as you can to get ideas for what has helped them and may help you. See if some of them will work with you and if you really want the help then you must be willing to show everything (visually) that's going on with your playing over skype or video chat....not a pre-recording either is best.

Above all else your entire history of playing needs to be laid out in front. It can be hard sometimes to get patients to observer and tell you what they are truly feeling (physically and emotionally). Most can tell you how stressed out they are, but most don't even know what to be looking for jotting down in their observations, or what they should take note of in their playing history or current abilities. 

The musician must be guided through both the physical rehabilitation and the emotional hurdles that come with coping with the disease. They also must be retrained how to maintain a state of mindfulness while engaging in rehabilitation. Being a holistic approach required, many require a combination of services which can include anything from the help of neurologists, physical therapists, body movement specialists, musicians with focal dystonia who help rehabilitate, therapy, and even alternative medical help. It really is up to the patient to find what works best for them, to keep an open mind, and most importantly remember they know their own body and state of severity better than anyone else does, so it's necessary to do what is best for you despite what others may emphasize. For example, some may have additional maladies along with their dystonia; ex. TMJ, and this needs to incorporated into the whole plan...it can't just be ignored because it too involves the jaw and overlaps with the dystonia which involves the facial muscles and nerve function. Another example is someone highly spiritual who struggles with losing faith during this process....during this time you might emphasize how important it is to do activities that help them feel more intune with their spirituality, or something as simple as joining a musician's with dystonia group where one feels more included and in-this-together. Sometimes that can provide encouragement and hope. 

Because musician's dystonia is very specific to our profession, it is hard for neurologists to understand what the disorder all encompasses, including how to gauge our severity of symptoms, degradation, or improvement in symptoms. It's not easily measurable and they are still trying to find better tools and ways to evaluate us. 

It's important to evaluate how the disorder is impacting the patients quality of life, functionality; and functionality can be assessed both through observation, asking questions, and qualitative means. 

Most importantly for musicians who are effected, try to remember even though some doctors and neurologists may not be the best at providing us support or effective treatment after diagnosis, they are on our side, and there are a handful of them out there who are passionate about finding answers....most of all we need them and we need to bridge the gap between the medical field and the performance arts. This would require more education on musician's behalf, because if we are ever to see more medical professionals out there that understand what it's like, they need to be dually musicians and medical professionals....and it takes a musician to bridge that gap. 

.....................................

Knowing the cure to focal dystonia is ideal, but just because we dont know the etiology, doesn't mean that we should ignore observing the signs and symptoms and learn more about what's going on. That's how it was catagorized as a neurological disorder in the first place! Because it is one....we justdon't know how the neurological disorder comes about or why. The signs and symptoms are classic neurological signs. If you look up the term, "spacicity" - meaning spasms, anytime there is involuntary muscle contractions happening to the body when doing a very precise or specific action (e.g. turning the head left, extending the arm, grasping a pen, blinking) or if it's ongoing (like in parkinsons) it is a tall-tell sign of a malfunction in the brain or spinal cord. 

The fact that it effects us also in very specific ways, for example; occurs when playing in mid-to-low register, but not high, air leaks on one-side or pertruding lip but not the other, lack of ability to sense/grab notes, range-specific, dynamic-specific, attack-specific, and symmetry-specific....this all points to the fact that there is a malfunction in our motor skills and sensory....it is not a "physical" problem, a mechanical problem, a bad habit occurring, or a result of tension....it is a tall-tell sign of motor skill abnormality. 

What gets me is why is it so difficult for musicians to realize that what we do requires a high level of refined precision to get to that advanced level of playing. We may feel it is natural and that things develop naturally if you simply practice. But we don't realize we're practicing 4 hours a day, with 7 hours of rehearsal a week, 1 hour of lessons a week, including playing in chamber groups, brass choirs, quinets, and gigs, etc. It becomes as easy as riding a bike.

But what we don't realize is the more refined our motor skills become, the more easily damaged or messed up they can become if something inhibits it. For example, there's this video of an engineer who wanted to conduct a bike-riding experiment. He loves riding bike, but his co-workers decided to play a trick on him one day and they took his bike and made it so that the wheel turned left when he went right, and the wheel went right when he turned left. He thought this might be a challenge for a couple minutes and then his brain would grasp right onto how it worked and he would just be able to ride although a little wobbly....kind of like a video game controller and getting use to the changed settings......but to his surprise, he couldn't even balance the bike with two feet on the pedals, let alone get it moving. He was so confused as to why it was SO challenging. It took him 60 days to learn how to ride it and he had to put in intense concentration. He tested his son  who was a kid and his son took 10 days to learn how to ride it.

He realized that once the brain has learned a motor skill such as riding a bike, and I mean really digging the brain pathway deep and you don't even realize it.....that brain pathway is practically unchangeable the older you get and also the amount of time you spend developing that brain pathway determines how deeply engrained it is. Now, if that brain is asked to do the same thing "i.e. ride a bike," and the bike functions have changed, the brain pathway is not going to go into "i'm learning a new motor skill mode," but instead into, "somethings wrong mode" and its going to fight you every step of the way because that pathway is so deep (the bike has become an extension of the body rather than an innatimate object that you are riding) and the brain is always going to resort to what it's body map of how the bike has always operated. 

It's the same with musician's dystonia. It's also very similar to a stroke victim. It takes under a minute to experience a stroke, and next you know you can't walk....and it's something you've been doing your entire life since you were 3 years old. How is something like that just gone....I mean not even partially gone or slightly gone...but it's entirely gone! You have to relearn how to walk again. You know what it feels like to walk, you know what your body should be doing, and you don't even have to think about it....but here you are having to think about it and it takes so much physical effort and mental effort intensified into every little movement initiated. 

Focal dystonia is the same, it starts out slow, it progresses, and the next thing you know it feels like you can't play in teh blink of an eye. What happened? Just a month ago you were able to play Strauss tone poems, Mahler symphonies, and play the entrance to Ravel's Piano Concerto with grace and beauty effortlessly....you didn't feel physically taxed, you feel good, in fact great, like you're at the height of your playing abilities and you're going places, and you love the way you sound and excited and fortunate that you are capable of playing such pieces...it's taken a lifetime to get here, and there's never been a physical setback or tension problems, etc.....and now a month later you can barely get through Mary Had a Little Lamb, let alone get a sound out. It feels like a virus is taking over and you can physically feel it beneath your skin, this lack of stability is growing and your ability to sense things or feel how to slot things too....and you practice more and more to try to resolve it just gets worse, so then you take time off, and that doesn't help either....it's like your body is revolting against you now that you are functioning at a high level of motor skills. It's like a brand new computer graphics card streaming effortlessly and then the internet  starts cutting in and out causing a delay in the imaging. It's not the card that's degrading (or the body), it's the signal that's being sent which has gotten weak or degraded after years of functioning normally. 

However, I believe it is a combination of genetic and environmental influences, just like stuttering, and most other neurological disorders. For example stuttering developed in childhood is considered genetic but includes a combination of trigger elements such as motor skills, language skills, and temperment. Disruption in the speech pattern is due to an interaction of the previous along with other various factors.
Treatment options include training to change speech patterns, counseling to minimize negative reactions, pharmaceutical interventions, and electronic devices that enhance fluency. Self-help and support groups also play a prominent role in recovery for many people who stutter.

It's important to know that finding a cure does not point towards the definite cause of something. (For example; we know that strep throat is a result of bacteria, so we kill the bacteria with medication, but why the strain keeps changing and passed on from person to person, or how we can avoid it indefinitely doesn't exist. The same with diabetes. We can treat it with insulin and even though it can return a person to normal function, they still live with it the rest of their lives).

Also just because we don't have a cure doesn't mean the symptoms cannot or should not be treated. For example, imagine you go to the doctor and tell the doctor you somehow scraped your knee and it's bleeding. You don't know what caused it, but you're bleeding. The doctor is going to tell you it needs to be disinfected, to put pressure on it, and a band-aid or bandage. But if you tell the doctor, "why would you treat it without knowing what caused it?" ...he's going to look at you like you're crazy. It's because you have to treat the symptoms too, even if there is no known cure or cause....the most you can do is treat it and try to heal or lesson the impact. For example, we don't know what causes MS, Alzheimers, Dementia, Autism, etc. and for most there is no formal or standard way of diagnosing it through some type of blood or brain test....it's based off the signs and symptoms which give tell-tail signs of what it is. They may not know the cause, but they can tell when something is being specifically effected the most by the brain such as language, motor skills, memory, etc.

It's not surprising that musician's dystonia involves dysfunction in the brain because we require such a high level of efficiency in motor skills.