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.