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.

(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.

Never Give Up!

Recovery is Not Linear...

The MRI Brass Repository Project March 2019

https://www.gordon.edu/mrihorn

Please donate this month!!! I spoke with Dr. Iltis last year via skype/phone about the project and we had a long conversation over our experiences. It was one of the best conversations I've had over embouchure dystonia. I really wished to participate, however, the deadline had passed, and neither they or I could afford the flight costs from U.S. to Germany, housing and food.

I'm happy to see they've been granted more time!!! I'm hoping they'll receive the funding needed, as there is not enough research being done on embouchure dystonia in general and I would love to see them get as many scans as possible on this rare piece of equipment.

They are using one of the fastest imaging scanners that exist. It can provide more insight as to what is going on inside while we play; not only in the brain, but physically. It is very high definition. They are comparing the imaging scans from the professional brass players without dystonia to the group of brass players with embouchure dystonia. They are also gaining more insight into how playing varies form individual-to-individual anatomically within. This can help educators and musicians begin to really understand further details as to what is involved in the function of physical performance.

I'm rooting them on and so very supportive of this research!!!

Small Steps Add Up...

Return to Orchestral Playing

Hi everyone! In case you didn't know, I took a huge leap and started playing in a local orchestra again this past November. It's a community orchestra, so nothing too crazy or strenuous on my face. I'm hoping it will allow me to take my time re-introducing myself to playing more on a consistent basis.

It definitely has been helping a lot! Granted I never could have handled this years ago, and I would never recommend playing in a group during the onset or height of dystonia. However, I find it majorly beneficial at this stage of recovery.

There was a time when I realized I had to get back into the swing of things, instead of just taking small gigs or subbing. However, it can seem like a journey in itself trying to find the right environment that supports you and willing to take an injured musician in. Most of the time I have to mention it afterwards and hope for the best, and if not, then it's not where I want or need to be in the first place.

The last big orchestra gig I did was in 2017 for the Longmont Symphony, which is an advanced and professional sounding orchestra. Therefore it was nerve-wracking at first, but oh boy, did I have sooooo much fun just being surrounded by players of that caliber and feeling alive again. I played 4th horn on Pines of Rome, Daphnis and Chloe, Strauss 4 Last Songs, and Elgar Variations.

However, my very first time playing in a group since 2010/diagnosis was while subbing for a horn player in a unique jazz-orchestra ensemble called All Angles Orchestra, created by a former classmate of mine (Michael Conrad) who happened to be the doctoral teaching assistant of jazz at UNC (Colorado) at the time. He's now a professor and won several awards for his compositions. I didn't expect him to reach out to me because it had been so long (we attended undergrad together in Iowa) and also because of my setback, but I was so happy he did. It really pushed me to take that first leap of faith.

It can be a bit scary every time you take a gig, or even just playing alongside others at first. It can also be physically taxing committing to a group on a weekly basis if you're not sure you are ready or playing more makes your symptoms worse. It really depends.

However, I think if you are optimistic and know your limitations very well of what you can handle or not, everything can be manageable. The relapse days can be brutal sometimes, but they don't happen as often anymore, and very rarely are they so severe that I become concerned.

I still get to play some decent repertoire; we had our christmas concert in December, and now started opera season and some other great pieces. I'm playing 2nd (but currently covering 4th this month) on the Firebird Suite, which is always fun to revisit on a different part, and playing a couple light pieces like La Gazza Ladra. I've always been a lead/principal player most of my life, and ever since the height of my dystonia back in 2010, I have been on 4th horn whenever I play in a group. That's not to say it's a bad thing, but it has taught me a lot and helped me also separate that ego from needing to be the best. All-in-all it has been an ongoing lesson.

I look forward to orchestra rehearsals every weekend! I LOVE it, very much. I forget how therapeutic it is and how much I need to be a part of a music group. Before I was either playing via demonstrating for students or having to play with them due to teaching. It's not the same as making music in an actual ensemble. Therefore, I never felt fulfilled to a certain degree.

I actually ran into a former CU-Boulder classmate who is a trumpet player, and also a bassoon player who use to volunteer to help out at concerts at the school I use to teach at for El Sistema. The conductor of this orchestra has a great sense of humor and I can tell it's a healthy environment.

I just recently watched a video where Dr. Farias discusses how one of the key components during the recovery process from any type of dystonia is re-introducing yourself to a former social environment or activity you use to do. It will greatly improve your wellbeing and facilitates the progress more than you would imagine.

I know that a lot of musician's with embouchure dystonia are not able to take this step for many reasons, or it can be just the mere fact that dystonia makes things so unpredictable and unstable at times.

Overall I am really proud of where I'm at and just taking my time trying to regain the last portion of my abilities. I feel as though I have about 70% of my abilities back, and on relapse days 60%. I know that's a weird figure...but I don't know how else to explain it.

I know a lot of people think, believe, or will tell you that embouchure dystonia is an absolute end to your dreams and career. The truth is that if you believe that B.S., it will do you nothing but harm and may even stop you from recovering at all.

Believing in a 100% recovery is half the battle. I seriously will not give up, even if I die trying. Even if I'm 90 years old and lost all my teeth...I'm not the quitting type, and the more the odds are stacked against me, the more fuel to my fire and determination to prove those out there wrong.

Anyways, I just wanted to share this moment in my life. It may seem like a small step, but small steps add up over time. I hope that it provides hope to others who may be afraid that they won't ever play among other musicians again, or even enjoy it.

That's all for now, have a wonderful day, and never give up on your recovery efforts! :-)

Embouchure Dystonia: I'm a Survivor

I was driving home yesterday and I heard this song called Survivor by Zach Williams and it brought me to tears.

This song hit close to home and relates to how I cope with living with embouchure dystonia, how I find the strength to keep going and use relapses or any life setbacks as fuel to my fire.

I usually don't share this kind of stuff. Although I am not religious and don't belong to any denomination, I am still spiritual in my own undefined way and I respect everyone's beliefs or lack-there-of. So don't want to be labeled as pushing religion on others.

I just wanted to share something a little more personal and that uplifts me. Don't know if anyone else can relate to it, but felt I should share a daily dose of what inspires me to continue overcoming focal embouchure dystonia.

Mantras

Just wanted to share my mantras in both Latin and English. These give me the greatest amount of inner strength no matter when or what I'm going through. I use them during meditation or when playing horn or in prayer. One of my biggest strengths is perseverance, and these mantras accurately reflect my mentality whenever encountering obstacles/life challenges. They resonate so well with me and I always keep them close to my heart. Happy Valentines day everyone, I hope these help your inner strength shine through as well.

October: Monthly Shared Articles

First article is titled: "What DOES it take to be a Professional Orchestra Musician?" 
This blog post also points out something that is a significantly huge part of preparing for focal dystonia rehabilitation! Changing your mindset from a performance technique mindset to an exploratory mindset full of love, creativity, and adaptability. 

Everything taught to you haas to go out the window. Foget it all (i.e. all knowledge and practice of technique, embouchure formation, setup, proper breathing...). Literally have to deprogram everything so you can start over and start physical rehabilitation from a healthy mental place. Not easy because musicians instruments and reputation are woven tightly into their identity.

What a great article! If you're like others who lean more towards this side, do whatever it takes to regain even a little ownership of your own voice/sound and expression in music. This is why guitar has always been my secondary instrument. It allowed me to feel creative and free of many limitations at times, or when demands got tough. 

Second article is titled: "Focal Dystonia of the Hand and What the Brain has to Do with It"

A glimpse at part of the article:

 "We get similar effects in blind people who read Braille with several fingers at once: they develop a single representation of all these fingers on the somatosensory cortex, but are not able to determine which part of the information received in the brain comes from which finger. Psychologist Thomas Elbert further points out a parallel of this in all of us: our toes are generally stimulated only simultaneously as we walk, and most of us have trouble telling which of the middle toes has been touched upon application of a light pressure stimulus. Indeed, our toes are not individually represented on the somatosensory cortex as our fingers are."

"Dr Merzenich of the University of California San Francisco calls focal dystonia of the hand a “learning-based catastrophe” and a “failure of the brain’s learning processes”. Consequently, he focuses on developing techniques that will help to “re-normalize the learning system”, in helping to newly distinguish the areas on the somatosensory cortex that have become blurred. Although this approach is very new, Merzenich claims some good results in training children with linguistic impairments, such as dyslexia, which show similar blurring of representations in the brain."

First Orchestra Concert in Six Years!

I had the honor of performing with the Longmont Symphony Orchestra in Colorado this last weekend. I took a risk and said yes to subbing for the 4th horn player, thinking that it would be doable with a couple easy pieces and one large more difficult piece.

But boy was I wrong about the programming! The concert included Pines of Rome, Enigma Variations, Daphnis & Chloe, and Strauss's Four Last Songs. There was transpositions in bass clef and old notation in some of the pieces and a tiny solo for 4th horn.

I had never been much of a low horn player, even before dystonia, I primarily held principal positions. It was too late to turn back now. Plus I had worked so hard and looked forward to such an opportunity for so long! I decided to prepare for it and hope for the best come rehearsal time. We only got two rehearsals and then the concert.

I was surprised that things went so well! I was so nervous about my dystonia kicking in during the long stretches of held notes throughout all of Strauss. I was scared that either spasms would violently through me off the notes (i.e. ending them abruptly), or I wouldn't have enough grasp on the notes to adjust my intonation if needed to (combined with using my right hand in the bell). But all the pieces turned out to be totally doable thanks to my mouthpiece that made things so much more comfortable.

I have been playing trumpet on a daily basis with my students. I have one class of literally 10 beginner trumpet players this year. For over a year now I've been having to play so many different instruments due to teaching; mainly flute, clarinet, oboe, trumpet, and trombone. On all of them I started out shaky, but my dystonia symptoms have receded a great deal over the year.

Trumpet is the one instrument I've spent the most amount of time playing. My dystonia symptoms are actually significantly less severe on trumpet than any of the other brass instruments. Luckily I own a french horn mouthpiece designed by a trumpet player (you can totally tell if you ever get the chance to look at it) and it looks like a trumpet mouthpiece almost. The rim is contoured like a trumpets, the body is funnel-shaped, but then it is a heavy and thick/dense mouthpiece. Probably as heavy as a trombone mouthpiece.

The feeling of the trumpet rim (it's A LOT of RIM!) on a horn mouthpiece has done a bit of sensory trick for me and my symptoms don't kick in as often. I can't play very much in the high range, but that's due to the mouthpiece and it's rim contour and thickness. However, my notes are stable.

Enough about my mouthpiece! Here are some photos from my first rehearsal. Both rehearsals and the concert went smoothly. I definitely needed that feeling of playing in an orchestra again. It was way over due. I took a risk because I knew I could do it, even if it took a lot of physical effort. I was very proud of how much progress I've made and that I'm able to perform even the slightest bit or every blue moon again. There have been so many days, months, and years missing playing with an orchestra, so even having the chance to relive it once again, just once, is a dream come true!

Monthly Shared Article: Sax and Clarinet Player Tim Redpath on Embouchure Dystonia

Really wonderful insight into his personal experience with FTSED. Thank you Tim for sharing your story!

Originally published in Clarinet & Saxophone Magazine (2013):

https://www.cassgb.org/features/post/musicians-dystonia-a-silent-plague/

Milestones: Played Horn in A Group for the First Time in Six Years!

A few months ago I received a message from a former UNI (Iowa) classmate of mine named Michael Conrad. He is the current Graduate Jazz Teaching Assistant at UNC (Colorado)...which is one of the schools I attended in my undergraduate studies. He had asked me to sub for the horn player in the UNC Jazz group he works with. 

At first I was a bit hesitant, but remembered how much I loved playing his compositions in my undergrad. Since then he's gone on to win numerous awards for his compositions. I informed him that I still was coping with dystonia and could play as long as it wasn't anything too crazy. He sent me PDF's of all the music to check and I told him it all looked doable, so I went ahead and took a huge step/leap of faith and drove up to Greeley to rehearse with them. 

I have to say it was one of the best experiences and decisions I've made this year! I was both excited and scared. But if anything, it proved that I have come a long ways with my embouchure dystonia, and that I must not ever give up. Right around the same time I received the news that I was selected as a participant in a research study on FTSED. Going to this rehearsal made me even more ecstatic for the upcoming research. 

I'm grateful to Michael for thinking of me even though I had not played the horn in a group since 2010, and for putting so much trust in my playing...even if it was just a rehearsal...I wanted to put my best foot forward. I also was very happy to see a former classmate at a former school I attended...it brought up a lot of memories and nostalgia from my horn playing days. Which is always an amazing feeling to remember!

Oboist Alex Klein Returns to the Chicago Symphony Orchestra After Battling Hand Dystonia

It was so wonderful seeing some good news for once lately! Today I opened my browser to find news articles posted on Alex Klein returning to the CSO after stepping down in 1995 due to Focal Hand Dystonia. Here is the Chicago Classical Review Article over his new appointment in the orchestra! Congratulations Alex! This news brings so many of us hope and happiness. 

Psychological Aspects of Recovery: Mental and Emotional Obstacles Faced with Musician's Dystonia (FTSED and FTSHD).

In the past I would have refrained from writing about this area of recovery because of the tendency of others to immediately hop on the psychological bandwagon belief that Musician's Dystonia is simply an underlying psychological or emotional disorder. As I have stated throughout many of my writings that I do not support that belief whatsoever, nor do I believe it is the true cause of this neurological disorder. That is not to say that there is no psychological effect involved that must be addressed.

It is what I consider one of the 3 major stages of rehabilitation; (1) Educating oneself on the disorder, treatments, rehabilitation methods, other related injuries/areas, the body (movement and anatomy), and literally anything involving musician's health. (2) retraining the mind (psychological cognitive restructuring). (3) Rebuilding Neuro-pathways (Physical Rehabilitation). 

These are my own opinions. However, it is safe to say that without a doubt anyone who has been marked with a major physical setback or injury naturally inherits emotional hurdles afterwards. As it takes a huge blow to ones self worth, it leaves us with doubts in our capabilities, dislike in our concept of sound, we start to over-analyze out of pure confusion and trying to fix what is going wrong with technique, and it leaves us overwhelmed and lost in the stages of grief. Sometimes we don't even realize that we are in grief or are in denial of it.

It is best to address the psychological aspects first and foremost before any musician tries to start physically rehabilitating. I believe they should be in a healthy frame of mind and emotionally stable. Many musicians who are hit with this disorder panic and want answers right away. They are very confused and don't want to accept the current state they are in. The only problem is that part of the answer IS embracing the current state. Mind you that embracing a temporary state/setback does not mean it defines you or that you're giving up. The disorder does not define who you are or who you will be. There is a difference.

Being diagnosed with what is considered a career-ending disorder is scary and devastating. It is hard to see the silver lining when it seems there are vague answers and not just one solution to overcoming it. It takes a great deal of courage and optimism to look at it in positive light, and no one is ready to do that until they've allowed themselves to grieve and face the possibility of their worst fears.

But I look at it as facing ones fears and saying, "Even though I believe I will beat this disorder, I'm not scared of the worst that could happen because here are the good things that can come out of it...." It's like facing your fear in order to overcome it. Once you experience it, it no longer holds a death grip on you.

I can already hear my musician friends saying, "What good could come out of this awful situation?" In order to come to that point, you have to go through the stages of grief. You must cry over the misfortune, get angry, yell, curse others, become bitter if you have to, go through highs and lows, desperately ask for help, ask "why me?"...whatever it takes to heal no matter how bad it feels. But then there comes a time where you do feel you have a choice; you can continue mourning or build up the courage and say, "I'm tired of being sad. I'm tired of hating the way I sound due to the spasms. I'm tired of fearing my instrument, being frustrated, confused, fearing the worst, and living like this in misery." Then you find the strength to fight. Once you are ready, there is a lot you must change about the way you think, and in a big picture type of way...

• The first and most important thing I have found is learning to separate your worth from the instrument and center yourself.

We are gifted with the love of (sharing) music. It initially started off as a feeling and transferred to an instrument that resonated with us personally. Yet this gift of the love of music is still with us, even if we can not play for the time being. The instrument does not define who we are or our gift, just like our disorder does not. We must believe that our knowledge of music and passion is meant to be shared, that all we've done in the field is not for nothing. Being gifted with music means we have the choice to share it in more ways than just one. Focusing on another area of music or field/activity that reminds us of that love surprisingly allows us to still remain connected to the gift. It may not give us as "full" of a feeling as we had before, but it can as time goes by and we find our confidence returning in something music or non-music related that we didn't know we had a talent for.

Having Dystonia allows us to focus on other areas of our lives that we didn't get to do while focused on performance. We have more time to build relationships, explore new areas, work on our health, study something we never got a chance to do.  Some are too afraid to try to live again, to seek out something similar out of fear that it won't be the same.

We are literally brought back to the major question of "Why do we love our instrument so much? and where do our priorities fall? It also makes us question what is success? Did we love our success more than the music? Dystonia really grounds us and brings us back to why we love music. Success and failure are one and the same. There are no rewards/praise for success. The reward we found in music when younger was that feeling of exploration. We could make a million mistakes and still love the way we sounded. Yet the more advanced you become you lose that sense of exploration, creativity, curiousity, and unconditional love and acceptance of how one sounds.

• That leads me to the second thing. You must embrace the way you sound and love it.

I am dead serious when I say it is vital that you revert back to that childhood state of mind in order to embrace your dystonia. Dystonia must be confronted with that same feeling of exploration, curiosity, and unconditional love and acceptance of how one sounds.

Seeing other people play music, even small children, reminds me of what a tremendous blessing music is in this world. It's meant to be used as a form of expression whether or not it sounds good or bad...it has meaning and that is all that matters. Technique no longer matters, all the blabbering about breathing, hitting the notes, using articulation, etc. All that matters is embracing the love of music and letting go of the ego, the success, or judgement, and really appreciating what a gift it is to have music in the world. I imagine my feeling is similar to that of someone who has lost one of their senses like sight or hearing. We don't realize how truly miraculous something is until it is gone. We appreciate it more, aim to protect it, and love it in a way that is no longer criticizing, demanding, or taking it for granted as we did before.

I'm serious when I say I absolutely love hearing beginning band students play.
I believe that is the kind of love it takes; to embrace music with no judgement, or at least an appreciation for it that is much deeper than before.

• Third. Shift your focus from the performance mentality to relaxed awareness. 

I learned to not fight my symptoms or judge them, but to let them happen and just relax into a state of awareness. (ex. "I'm noticing that it's easier to grab an F than a G, and the angle of my mouthpiece made a difference today"). That way you are focused more on feeling things out than fixing things with technique or judging the way you sound. Your body knows what to do and is trying to tell you something, so listen to it and get to know the symptoms well. I started taking an inventory of my symptoms and recording myself. The more I played with an open, loving, and aware mind, the more I discovered and adjusted my playing over time and saw improvement.

Performance mentality focuses on analyzing technique, physical agility, skills and accuracy. Relaxed awareness is what is needed instead. Focusing on embracing the symptoms, getting to know when they happen, looking at them with curiosity, exploring ways to lessen them through adjustments and modifications.It seems pretty simplistic and basic, but it works if you have patience and don't rush the process of recovery.

Though this may sound odd, there are some other things I did to help embrace my dystonia sound; telling my horn thank you and that I loved it no matter how it sounded, recording myself and listening to it with love, sympathy, and curiosity. Also practicing mantras, visualizations, building self-esteem, and treating myself like a survivor and not a victim were other major factors in changing my state of mind. Also farther down the road I liked listening to recordings of the horn before I fell asleep and visualized that my playing felt just as smooth and effortless. Pretty soon I started having vivid dreams about playing easily and this boosted my energy and happiness the more it occurred.

I started off practicing in a practice room with a piece of paper over the window. As I got more comfortable with accepting my sound, I removed the paper. Eventually I moved into a larger classroom, and then a stage. I adapted myself so that I did not fear the way I sounded in front of others. Whenever the thought that someone might be judging me popped up I would tell myself, "They are not judging me, I must be judging myself harshly to assume so. Even if they are, they do not know what they are doing. If they are, I feel sorry that they have been brainwashed to look down so shallowly on the act of making music which is a beautiful thing. I must remember I am now at a higher state of mind than what I had before and I love the way I sound no matter what. I must let go of the inner critic. I love myself. I love my sound. I accept it."

• This leads me to the fourth thing that I have learned. It is important to surround yourself with people and environments that help promote a healthy state of mind.

Teaching beginning band students helped me a lot, and this is actually why I'm going into teaching. I love working with students who are just starting to learn music because that is when I most clearly see the importance of music. In a way it is living my life up to my ultimate rule...that it's always about the expression of music and imagination more than anything else. It is similar to developing strong morals and values and sticking to them, living them, breathing them, becoming them.

My students never judged the way I sounded and instead thought it was the best thing on earth. It reminded me of how children are much more centered (mentally and emotionally) than adults can be. They are in that state of daydreaming and imagination all the time. I am happy to influence them in a positive way and help them find balance in not only their abilities, but way of thinking/approach too. It was much healthier for me to be around children with this state of mind than performing in a group full of adults that are way too hard on themselves and others.

Many Dystonic musicians who talk to me usually ask me how I feel about playing in a group. They hate it when I tell them that I am against people playing in an ensemble of high caliber or even of musicians that would not understand what they are going through. I think it is important at the beginning of rehabilitation to focus on yourself and spend time playing alone and not aggravating things. Later on as playing gets better, then maybe if psychologically prepared for it, but playing in a group can add even more anxiety, pressure, demands, fear, frustration, and stress that you already deal with when facing the dystonia symptoms; not knowing if things will come out correctly, or if you'll be able to play a passage, etc. Live concerts are the worst because it adds in adrenaline, and the adrenaline heightens the dystonic symptoms just like loud noise heightens or triggers a migraine. It's best to remove oneself from anything that worsens the symptoms for the time being.

Instead, surround yourself with a network of people who understand; whether it be the musician's dystonia group on facebook, write or visit with other musicians from the group or who you've come across online with dystonia, lean on a supportive teacher/mentor, etc. If you feel comfortable with talking to me, then by all means call me or message me if you need to. It's the least I can do for others.

If can, speak out about your dystonia. It is oddly relieving. Not everyone is comfortable with that, but for me it is a way of healing. Knowing that I am informing others (non-dystonic people) about this disorder that is rarely spoken of, makes me feel like I'm not wallowing in pain while keeping my mouth shut. I want others to know so that some day others who are in the same boat won't feel as alone or outcast. Yet, I always speak positively of it; never victimizing myself, but instead aim to promote awareness and understanding of the disorder.

I know this is not how everyone feels, but I believe that my dystonia was meant to happen for a reason. I may not understand the reason, but I choose to believe that it is because I am strong enough to handle it and navigate the tremendous loss, and that I am to help others and promote awareness about this disorder. I believe that what I'm experiencing is unique and it is rare to see anyone share their experiences about this disorder, so it must be done for the sake of healing and helping. I see a lot of injured musicians do this, and it makes me happy to see them channeling their love and support to others in need before themselves. This leads me to the importance of belief or hope....

• Last, but not least. Do your best to find the silver lining and say it out loud.

Physical rehabilitation tests your patience unlike any other. There are many days where you will get better, then relapse. There are many days where one adjustment might work and the next not. There are even more days where you just plain sink into depression again. The wound from losing what you love never truly goes away. It is not easy to stay optimistic about it all the time, and I don't suggest that anyone avoid their emotions; whether it be sad, angry, happy, excited, etc. It is important to go through the motions and let whatever you feel happen so that you can heal.

Creating some strong beliefs in yourself and your recovery will carry you further and support you when things get tough. When you are able to find the silver lining...even if it's not something you necessarily completely 100% believe yet...say it out loud no matter what. It could be something as simple as, "Maybe not today. But tomorrow." or "Can't have progress without some relapses." I always say it out loud, whisper it, or say it to myself in a mirror because it somehow feels more grounded and reassuring. I know I sound crazy for doing such things, but it makes a difference and that is all that matters. Whatever gives you strength, believe in it and hold onto it....not matter how ridiculous it may seem, look, or sound to others.

The psychological aspects of recovery are a huge obstacle to overcome! It is probably the most difficult part of rehabilitation. I see these psychological aspects as a very heavy fog that blinds us from the physical obstacles beyond that. Once the fog is lifted you can focus on the dystonic symptoms and alleviate them through physical therapy and rebuilding the neuro-pathways slowly over time. But first and foremost you have to be willing to embrace what is right in front of you and keep tremendous patience. Not everyone is ready to do that or needs help with it. Some good options to help find what centers you is meditation, hypnosis, or it could be something spiritual or religious like going to church, it could even be helping others...whatever allows you to reflect inwards and face the grief at your own pace and allows you to think about a meaningful purpose of this experience. The good news is that you will see progress without a doubt, and time really does heal both the mind, body, and soul.

Berklee College of Music: A New Understanding of Overuse Injuries by Dr. William F. Brady, D.C.

I just had to share this amazing find! It is an article titled: A New Understanding of Overuse Injuries by Dr. William F. Brady, D.C. Please read the article linked, because it provides a new way of looking at overuse injuries or repetitive strain. I highly recommend it.

I find this highly fascinating because my acupuncturist and myofascial therapist told me a similar thing when I went in for treatment. She said that part of my problem was built up connective tissue in the back of my jaw. She felt around my face and the inside of my mouth (I know, weird) and said I had an overwhelming amount of it.

So I basically went under several months of myofascial release therapy where she released the connective tissue from the inside of my mouth by using pressure. The connective tissue started in the middle of my cheek and went back deep into my jaw and even as far back as the corner of my lower jaw. Equally important is we worked a lot on releasing tissue and tension around my whole upper body, and predominantly around my neck.

Many other forms of therapy such as rolfing and feldenkrais use similar methods of helping the body release tension. It was very very very painful releasing the tissue. But! It was definitely needed and it actually changed the way my face looked and felt (my right side of my lip and face looks more equal to my left now without the upper lip pulling back and upwards on that side, which gave me a weird appearance). I wish I had known about it before, even as a non-injured musician in the past! A professional European horn player told me that he also received this, even if he isn't injured because it's important to take care of the body. Warming-up is always not enough.

We have to treat our bodies like athletes, even if it's use of smaller muscles. A lot more goes into playing than we give credit because we are not aware, and tension can build up over the years....and not necessarily because we're doing anything wrong, but because it is natural. Some people can take a beating for years and years and not feel anything, whereas others are more prone to overuse because of their physical makeup, or even genetics in the case of onset of dystonia.

We just have to take extra measures that are not traditional to keep check on tension....which is hard to do since most often injuries sneak up on us and slowly degenerate our ability over time before we are even aware of it.

Also a lot more muscles come into play than we know. Most brass musicians consider their embouchure as only the use of the muscles around the lips, and never understand the actual anatomy or function of the muscles in the face (where the muscles connect to, what each on initiates) and that the neck and upper back muscles make a great impact on your playing too, since they tie into the facial muscles and nerves around the jaw.

Additional notes: Thank you to Scott King, DC for getting in touch with me! If any injured musicians are in the Denver/Colorado area and looking for soft tissue diagnosis and treatment, Scott is available and has trained with Dr. Brady who wrote the article I shared above. I offered to share his contact information below:

Scott King, DC
Novo Soft Tissue & Spine

720 S Colorado Blvd Ste 610S

Denver, Co 80246

(303) 990-0159

100th Post! Facial Myofascial Release, Acupuncture, Embouchure Dystonia, and Nerve Damage Work on my Face

I think it was 4 weeks ago I had gone on a 2 and a half week stretch without acupuncture. I began to feel the soreness in my face start to creep back in and I had no idea what was going on. Things seemed to be getting better until then.

I was becoming worried. Also even though I'm only allowed to practice 15 minutes a week, I noticed my face was pretty weak due to the intensity of the sessions, so I backed away a bit and have been avoiding my horn as much as possible. However, when I did play, it seemed a lot worse...and I just didn't want to push myself. I realize it's going to take a lot more time.

When I went to my acupuncture appointment I realized my original acupuncturist must have went on maternity leave since there was someone else standing in. We went over my symptoms and paperwork. Surprisingly she specialized in (barnes?) myofascial release and acupuncture. She had some facial damage after a car accident a long time ago, so she knows what it's like being in pain.

There is a huge difference between myofascial release and just a facial massage. I don't know a whole lot about it yet, but will post more links after do some reading. She told me that repetitive movement (such as what I do with my jaw and facial muscles when I play horn) causes the body to build up connective tissue to reinforce the protection of the muscles from being overworked. This tissue becomes too strong and can cause a lot of problems such as nerve entrapment, TMJ symptoms, spasms/involuntary contractions, pain, and can cut off or lessen blood-flow to certain areas of the limb/body part.

She could tell immediately that the right side of my face had a lot of tissue built up and was tense....not soft tissue like it should be. She could see the left side of my face was the side that was weak and not moving properly. The right side also was so tight that the skin was pulling my lower lip....which is what I always see most noticeably when I play horn. Also when I open and close my jaw, the right side has so much tightness that it closes first more than the left side, and the left side is able to go down further when I lower my jaw.

Her aim in the first session was to release some tissue in my face and then do acupuncture to increase the blood flow to the trigger points or areas needed. This required her to push against the tissue on the inside of my mouth. It was very painful!!!!! But! Afterwards the reward was an enormous amount of relief of tension form my face. She was surprised to see an immediate softening of the tissue in one area, and even I could feel how soft my right side had started to feel compared to how it felt before. Even when looking in the mirror, I could see that my physical features were more aligned.

Even more pleasing, was how much less tense my jaw was when I slept at night. I feel like my right side joint had been able to close properly or seemed to sit properly...if that makes any sense. I had always felt like my jaw had been becoming more and more misaligned and thought maybe it was a wisdom tooth coming in or something, but the dentists said I had none coming in.

She's also working on opening up my C1 ...which I think is the cranial nerve?
I am really surprised as to what acupuncture is teaching me. When I first came in, I never expected for things to get so intense, as I only had a slight bit of throbbing in my cheeks...but thought it was because I had been playing a lot in rehabilitation. I never thought much about it. But the sore muscles became more constant and eventually became chronic soreness.......but it always remained in just the center of my cheeks. But once I received acupuncture, it's like all my nerves flaired up, sending signals. I felt certain areas all over my face start to feel sore, and I realize that these types of signals area always signs pointing to the fact that there's something wrong or that there's something more going on besides just the embouchure dystonia symptoms, or just the soreness in my cheeks.

However, the more I received acupuncture, the more relief I've been getting. But the myofascial release I believe is exactly what is getting to the source of my dystonia and pain relief. Acupuncture has helped with the nerves and blood flow in my face, and it's definitely done a lot to help, but myofascial has made such a huge difference in the structure of my face and feeling of my face from the inside-out, that I can't help but notice how significant it is to my recovery....and I've only had two myofascial sessions so far.

Anywhoo! I feel like it was a blessing or miracle that I met her!!!! I'm so glad she knows what I'm going through since being through something similar but different, and her passion about helping those with facial trauma means a lot! I got that feeling like I had fallen into the hands of the right person at the right time. Divine timing!

The soreness in my face was most noticeable near my ear and back of my jaw when I first started acupuncture in November. However after one session of myofascial release, it has now moved to primarily the front of my face and behind my ears, and the back of my head. I also am not allowed to play my horn at all. Which I think is really good. I can do this! She said that if the muscles are always in contracting-mode, they will remain contracted. We must teach the face to have the natural reflex of relaxing again. The body has "contraction" built into it now, and it takes a lot of repetitive work to reverse this and teach the body to relax instead of contract. That is the aim. So playing my horn would just reinforce contractions in my face, so I need to wait until I'm 100% recovered before trying anything again. And even then, I will have to of course relearn how to play my horn avoiding as much tension as possible.

I think myofascial release would be great for even non-injured/disordered musicians. Like sports medicine, but for musicians; it's good to have a licensed professional release some of that tension from the body from time to time.

I am really grateful to God for bringing these people into my life. My acupuncturists have changed my life and I have so much hope and faith with the relief they've given me in this short amount of time. I will do whatever it takes and be patient with however long it takes to make sure my face is relieved 100% of tension! :)

Finding Strength

I refuse to believe there is no possibility or chance of overcoming embouchure dystonia. There is nothing that can waiver my willpower, determination, and patience. No one can stand in my way. I know without a doubt that something once so natural cannot be lost forever when my muscles still possess natural abilities outside of playing. It is a paradoxical mystery as to why only very specific movements trigger it, yet the muscles can still function naturally when at rest. There is a way to return function or eliminate the triggers.

I don't know how I know, but I know THERE IS a way to reverse it. I know it in my gut and soul that this observation of contradictory therein lies an answer hidden somewhere, and that's what gives me strength. It's ultimate faith that what is considered impossible is possible due to that extra space of grey area and a question mark lingering.

I refuse to believe the only thing that exists is a dead end with no hope when the answer is at the tip of ones tongue constantly, and hints at the possibility of freedom from the disorder through glimpses or moments of normalcy after so much hard work and effort accomplished.

Most people who are diagnosed with FTSHD (Hand Dystonia) or FTSED (Embouchure Dystonia) ask, "How could my abilities degrade to such a state when I use to be able to play so naturally with ease and nothing wrong?"  when the question should be, "Why should I believe my dystonia is irreversible when normal function still exists in my muscles outside of playing?" Not all is lost when muscle function still exists.

If the possibility of all muscle function is to be completely thrown out the window into the realm of never returning, then I would not be able to use all of my muscle capabilities in my face; I would not be able to eat, not be able to speak, not be able to form a natural smile, not be able to whistle, not be able to do other related tasks or parallel motions. Yet, I still can perform other tasks with the muscles and movement in my face...so why is it not possible to restore function when it comes to horn playing? As long as there is that grey area, as long as my muscles function normally outside of playing, not all is lost...there has to be...there MUST be...there IS a way of restoring normalcy. I just know it! I refuse to let my strength and faith waiver!!

Acupuncture Sessions...ready, set, GO!!!

I've made the huge decision to seek out acupuncture to help with my peripheral trauma. Though I have had significant improvement in lessening my dystonic movement in my embouchure, the area where my nerve damage was is still causing me problems. I've noticed it more and more now that I've been working in my upper register again. I can't help but notice how limp it goes as I go higher.

I feel like a nerve is entrapped or stuck. Though I can function quite normally, its the sensation of feeling like my muscle in my upper lip is only half-functional. I feel it trying to move, but there's something preventing it. My dystonia symptoms also freak out more and come back pretty strongly after a few days of playing in my treble clef range. It isn't too hard to calm the dystonic symptoms down, but when I go into the higher register, it seems to dull the sensations around my embouchure. It doesn't make any sense.

After much deliberation, consideration, and speaking with a mentor and some extra guidance, I have decided to take the route of acupuncture. I feel I've come a long ways...regaining maybe 40% of my abilities, but I'm at a stand-still. There's only so much I can do, and I know there has to be some additional help to overcome what I'm dealing with.

I am really ecstatic and excited about my acupuncture therapy. At first, I was hesitant thinking about a needle or NEEDLES coming near my embouchure, but after reading the amount of research done on Acupuncture helping patients overcome Bell's Palsy, I find it miraculous, as it's known as a significant alternative treatment to neurological disorders...practiced outside of traditional medicine.

When asked why I never considered it before, I think it's because so often when dystonic musicians seek out medical help, we are lead to main-stream practice options such as botox injections, surgery, etc. that's way to harsh and can complicate things even more. I had known about the option of acupuncture before, but because the area where the damage was done had been tender when I was initially diagnosed, I had completely blocked it out of my mind as an option due to feeling it would hurt or make things worse. I definitely didn't want to bring any needles near my embouchure. But recently within the last couple months it was brought back to my attention the option of acupuncture due to meeting another horn player who overcame some embouchure and jaw pain and difficulties with acupuncture.

Anywhoo! Reading about the amount of cases that have overcome something as extreme as Bell's Palsy with the help of acupuncture, has left me feeling very hopeful. My acupuncturist says that because I have had my embouchure dystonia for so many years, it will take multiple treatments to overcome if possible.

Anywhoo, there's a lot of work to get done after a bit of a break. One of my best friends came out to visit this last week. He brightened my week up and we had a ton of fun hanging out! Was a good break among my hectic schedule!! Now, just to get some of my friends to move out here! :)

Also I haven't recorded a video in forever! I'm STILL waiting for my new mouthpiece to come in the mail. Apparently ordering it through my own job/work was not a good idea, as it got lost in the mail, had an invalid tracking number, blah blah etc. They said they are now sending it to my work place instead of my address, and go figure....it's the one week at my job where we can't receive shipments/orders due to our delivery person taking a vacation. LE SIGH. :-)