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.