Focal Dystonia Recovery: Deviate from the Norm

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

(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.

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)

The Role of Mentality or Focus in Rehabilitation

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

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

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

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

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

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

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

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

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

Don't Judge...

There are some things in life you will certainly never understand unless you have been through it yourself....
❤️📯❤️📯❤️📯❤️📯
#musiciansdystonia #embouchuredystonia #neurologicaldisorders #sensoryimpairment #motoroverflow

New Videos: 2 Concerto Snippets and 1 Excerpt

*All recorded/played with a straight mute.

Mozart Snippet

Franz Strauss Op. 8 Snippet

Till Eulenspiegel Snippet

Just recorded this after rolling out of bed. Whenever I haven't done my hair, makeup, or in my PJ's, I just zoom in 4.0 X on my embouchure. hahaha! ;-) Literally look like I woke up in a hay bail behind the camera. Even though my embouchure still looks like a crazy frowny mess, it's actually the most stable I've played on in years.

You'll probably notice when I play on my farkas deep cup I tend to shift to primarily upper lip, and lately the setting has been moving more to the right side, and although it's comfortable, I frown a lot more/embouchure collapses more. Whereas with my Dennis Wick Heavy Weight Mouthpiece in previous videos (the latest mouthpiece I play on sometimes) is primarily center lip with more lower lip involved and less frowning. I will use my Dennis Wick on days where my muscles just can't handle very much, as it requires less effort. However, I will always love my Farkas Deep Cup because of it's tone, and most of all when my symptoms aren't that bad and my muscles can handle it, it's so much fun to play on and I feel more stable.

I can grasp notes, tongue most, start and end majority of phrases. Most of all no spasms, just mainly lack of endurance or embouchure collapsing because of it...but luckily not collapsing because of the dystonia...there is a difference, but I can't explain it because it's something you feel with your sensory.  Also that dang lower lip on the left side has a mind of it's own as much as I try to flex it when needed.

Anywhoo, my phone wouldn't let me record more due to space, so I labeled these as snippets.

I'm not quite to the stage of being able to add in more musicality or to focus on that because I don't have that level of control quite fully yet. Definitely can't "polish" things up....there is no such thing as polishing things up when you have dystonia, unless you are nearly at a 99% recovery.

For now I'm just happy to be able to get through quite a bit despite the air leaks and collapsing embouchure.

Horn Section Gathering

Some of my section mates invited me over for an evening of reading music and socializing. This was the first time in 12 years I played these once familiar pieces.

It takes courage to play in an orchestra again while trying to manage embouchure dystonia. It takes even more to play in a chamber setting which is more exposed. Thank God I am part of a supportive section...it means the world to me.

It's both physically and mentally taxing on a whole different level. Takes enormous effort sometimes to adapt and make adjustments on the fly. It's like trying to jump hurdles on one leg (non-dominant side) over and over again. Sometimes you know there's no way of avoiding falling flat on your face and just have to get up and keep going and reward yourself for the small victories/hurdles you did miraculously jump over.

I do my best on 4th as it is easier to manage and I actually get to enjoy the feeling of playing rather than constantly having to manually adjust my settings every other beat (literally...it's like trying to learn to drive stick-shift for the first time while in a professional race car competition...there is no such thing as solely focusing on the road or automatic pilot...you're learning as you are going at full speed and it's ever changing).

We're planning on doing some summer gigs together which I'm looking forward to! I just feel lucky to do this and forever grateful!!

I am proud to say I got through 3 hours of solid playing. Even though my endurance is shot, my dystonia symptoms were consist; meaning they didn't get worse or severely degrade my abilities as I continued playing, which is characteristic. It's kind of like a snowball effect or quicksand where the dystonia just takes over if you continue playing.

Luckily it's been manageable due to the consistency/stabilizing of the symptoms. I think that is why I feel more comfortable saying yes to playing more publicly now, since my dystonia isn't as sporadic, unpredictable, and way out of control as it was in the past. It's become more predictable, consistent, and controllable to a degree and that's leagues better than having no leverage at all.

I thank God every day and celebrate the small things, such as just being able to get a note out of the horn...not many who experience onset of this disorder can hold a note longer than half a second before either: their aperture involuntary closes, their jaw locks, fierce spasms throw them off the note, a tick causes an air leak, or the seal breaks due to the embouchure collapsing, or they can't even touch the mouthpiece because their contractions are so severe.

You have to be grateful for the small progress despite the ebb and flow of it all...it's difficult to see results, but it's doable.

Chiropractic Work on Neck Begins!

Day 2 of chiropractic work on my back, upper body - shoulders, neck, jaw! Feeling a ton of relief and tension reduced. 20 more sessions to go.

I know a lot of musicians with dystonia say chiropractic help doesn't work. But for me it is important since I've always carried a lot of tension and problems in my neck. I can't tell you how many times people, especially teachers, would tell me to let my shoulders down and I would reply, "I can't. It's not like I'm forcing them into this position. They are bulky and stuck this way. It takes an absurd amount of work to unwind them. It's also the whole upper body that's this way....it doesn't derive in the shoulders."

When I was 15 my neck muscles were so tight that I couldn't move my head/face to the right. My mother who was a nurse practitioner took me to a neurologist because she thought maybe it was something worse because massage and relaxants didn't help. The neurologist said it was too early to tell if I had cervical dystonia, but most likely not the case as it is rare to onset at my age and I didn't really have more of the symptoms associated with it besides lack of range of motion and zingers attacking the back side of my neck/head. The DYT1 gene also did not show up in my blood work, and he said I would have known in early childhood if this is what I had.

Nonetheless they wanted to play it safe and gave me 10 large needles of botox injections around the base of my neck and 2 months of deep tissue massage/trigger point and it went away.

However, the tension in my neck has always been there. I saw a chiropractor briefly in my mid-20's after I was diagnosed with embouchure dystonia, but only because I threw my back out. The only work they did was on my lower back and hips. However, I never thought of using chiropractic work as a means to help with the tension in my neck and upper body.

That is why I've decided to try it now. Especially after I was informed that it is part of what is getting in the way of my recovery. I know a lot of people don't believe in psychics, but I was told by a medical intuitive that the tension in my neck and upper body has always been due to my spine. That it needs a lot of adjusments around my neck to fix it because it's never been addressed. He said it's been limiting me from recovering from the rest of my embouchure dystonia, that it was blocking my jaw movement, including nerves, and contributing to my lack of sensory feedback. This along with continuing my current rehabilitation strategies should show results.

As you know, I already work hard on relieving tension in my upper body through upper back stretches, shoulder, neck, tongue, and facial stretches. My primary form of rehabilitation has been (deprogramming and rebuilding) relieving tension and then finding a window of opportunity to get leverage and work on rebuilding a new neuropathway in that area that feels most natural, along with everything else - modifications, adaptations, etc. The reliving of the tension has contributed to a lot of my recovery, so I'm hoping the chiropractic work will as well.

Right away the chiropractor told me I need a lot of work on my neck and shoulders. He could tell it was pulling on the right side of my face.

Wish me luck!! I wish you could feel how much relief I feel in my shoulders and neck currently. It's surprising how much additional tension is lingering in there

Looking at Overactive Muscle Groups in Embouchure

Before I go on break, I just wanted to share a bit of my playing. Mainly to show an example of which muscles are currently overactive (receiving overactive signals), which ones are lacking feedback/loss of sensory - mainly paralysis in the lower lip (left side) and the entire left side of face, and air leaks.

Sorry it's quite dark and difficult to see at times. It's very easy to see which muscles closest to the surface of the face are overactive while playing; especially the zygomaticus minor, zygomaticus major (runs from the upper lip into the apples of the cheeks); levator anguli oris (runs from the corners up along the sides of the nose), and depressor anguli oris (in the chin).

I'm also currently playing while tonguing, which is very difficult to do, but so proud I can do that now!!!! For the longest time I could only do air attacks/air puffs, and later alternate them. Finally able to add in tonguing more consistently without everything going haywire.

I'm playing with my mute in, on my phone, so not the best sound quality, but it captures how many air leaks there are if you listen closely.

You'll hear me use a couple of nose breaths in my pivot areas when I slur near the end. This is to help remind my muscles to not overshoot or become overactive as transitioning briefly. Sometimes I can tell if a normal breath will cause instability, and therefore take a nose breath instead. The same goes with tonguing; I can tell if it will cause instability and therefore will use a air attack instead or alternate.

My primary obstacles right now are air leaks in the low-to-pedal register, lack of sensation and control in the lower lip on the left side (limp/paralysis), and in the high register there are air leaks in the upper lip right side.

This is also the first time in years I've been able to play more aggressively or louder because I can grasp notes better when landing (landing on middle C and B is still the hardest), which I try to show in the octave jumps; demonstrating how I can dig into the notes more and not fall off.

I play a scale passage in the middle range and then play it in the low range to show the difference in the various movements going on in my face. You can see the most amount of overactivity happens when I go into my lower register and pedal register. Also in descending scale runs which are more difficult than ascending. Near the end I slow things down gradually to show you how the speed affects the symptoms too.

The entire right side of my face is stable. It compensates a lot for the lack of control and sensory on the left. It looks like it's the right side that is moving a lot and out of control, but it is actually the left side that is affected the most by dystonia.

Though it looks like a lot of facial movement overall (if it's your first time seeing dystonia symptoms).....this is actually very mild or light; usually there would be more sporadic movement going on, lateral pulls, tremors, spasms, abrupt stops in sound, and more noticeable unevenness between both sides of the face.

It also might look like it hurts, but embouchure dystonia is not painful despite how crazy things look at times. I feel it is significantly easier to play now, but the air leaks are currently the most frustrating thing occurring.

However, this is a good sign and I feel like it is a result of my sensation/feedback returning; I feel my muscles regaining more grasp overall; I can feel where I need to loosen up or grasp more. I don't know if that makes sense?

Better that it's air leaks than full-blown spasms, tremors, and involuntary aperture closing (abrupt stopping of the sound).

I've stated before that the symptoms have gone away in reverse order of onset. Air leaks and the lower lip escaping were near the beginning of onset before things got substantially worse near the height of the neurological disorder.

If you are struggling to believe you can play again, please know I had the most severe symptoms in the beginning and couldn't even get a sound out of my horn and it carried over to my ability to drink, smile, and at times - talk. Although it's been 9 years since I was diagnosed, there was a span of 4 years where I didn't play much or work solely on rehabilitating due to graduate school and teaching obligations. So about 4-5 years of solid rehabilitation, focus, and documenting to get to this point.

Hope this shows a little bit of how Embouchure Dystonia impacts my playing currently. This is actually not the best I've played or can play, but still wanted to record for this month. Will post some videos of actual pieces (2 concertos) when I return. Excited about that! :-)

Thank you for being supportive and understanding! Please remember I am going out on a limb and showing a vulnerable process/state. I wouldn't say it takes bravery, but more like patience made of iron when dealing with any inconsiderate comments that come with the choice of showing embouchure dystonia publicly sometimes.

Finally, I just want to say if you have Embouchure Dystonia, please remember you understand your body, signals/feedback, sensations, and what does or doesn't work better than anyone else ever will.

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! :-)

Quick Video Post: Testing my Symptoms Across Registers

The other day I wanted to see how my large interval jumps were doing. So I started to play a little bit of the Till Eulenspiegel excerpt. Here I used a practice mute, which I often couldn't manage easily in the past from about 2010-2013.

This snippet of playing was used as a means to briefly test my symptoms, feel things out, and observe what signals my brain/body was sending me before I dived into really focusing on them.

It is not to show musicality, rhythmic accuracy, pitch accuracy, polished playing, or my skill level whatsoever. You can see my lower lip has paralysis going on in the left side and more viewable as I descend. It makes things quite taxing.

Though, I can't explain how happy I am to manage jumping across registers and play downward arpeggios spanning two registers, hit some high notes and low notes within a short consecutive time-frame. It takes a long time to regain those abilities even at a minimal/very basic level.

With embouchure dystonia, grabbing onto notes, maneuver them as they fly by, holding them out, or even landing on them is one of the biggest challenges due to the lack of sensation/sensory.

I've been able to regain the grasp on notes over time thanks to years of rehabilitation work. My main setback right now is air-leaks and landing on lower notes descending due to the lower lip protruding outwards on the left or because it is having troubles moving in general. You wouldn't believe me if I told you it actually use to be a lot worse. It's like trying to run a three-legged race and the other person isn't moving, so you're just dragging them along. haha! :-)

I'm also using a combination of air and tongue attacks. Tonguing is a whole different area on it's own, so won't go into detail there. It's task-specific, so the ability to do it depends on the register I'm playing in, if it is descending or ascending, the tempo, and if it is smaller or larger interval movement.

I will say however, I've noticed over the years that the receding of symptoms or regaining of control has happened in the reverse order of the onset and progression of symptoms. So my current state is a good place to be in.

<3 Until next time...thanks for stopping by! :-)

July & August Videos 2018

I have a couple of videos I uploaded. One was made yesterday on the 2nd briefly going over mouthpieces and lower-lip struggles, but the lighting and resolution turned out not so great. The other video covering scales high and low was filmed back in early April, but I hesitated to post it because I really did not look that good and I am angry at myself (health-wise right now). haha! However, I am very proud of how far I've come in being able to add back in tonguing, and moving up and down through each register step-wise/scale-wise. That's all that really matters, is showing my rehabilitation efforts.

Honestly, one of the reasons I haven't been posting as many videos is because of my health unfortunately. I haven't been in the greatest shape, thus my huge hiatus from blogging and facebook in order to refocus on my efforts to get in shape. Exercise is really important to me, and I have been happy with losing 20 pounds since then, yet I have a long way to go still.

Mouthpieces and Lower Lip Struggles with Embouchure Dystonia Part 1

Mouthpieces and Lower Lip Struggles with Embouchure Dystonia Part 2

Scales High and Low, Fast and Slow

  

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.

Rehabilitation Video Journals Updated

Just stopping by to update my inventory of videos over rehabilitation (you can see the whole inventory here: https://focalembouchuredystonia.blogspot.com/search/label/Practice%20Journal .... There's a couple over the last few years I haven't added on here and needed to. Just wanted to start it off with a before vs after video first to show the progress over the years. :-)

Before I got dystonia 2006-2009: I don't have many recordings except for from 2006-2009... but tried to smash a few excerpts together to show a bit of my abilities.

During height of Dystonia and right before diagnosed with it: 2011/2012:....first video of playing in January of 2011, and there was a lot I was too embarrassed to put on camera. But I had been trying to recover my playing since June 2010. The 2-4 videos are of taking an inventory of my symptoms at the time in 2012.

After: Fast-forward to January 2017 ....this is a video of me warming up before teaching lessons. I'm testing the waters and checking to see how my embouchure felt. I recovered a great deal from 2011-2013.

I stopped rehabilitation practice from 2014-2015 due to graduate school, and 2015-2017 due to focusing on teaching. I didn't necessarily stop playing, I just didn't focus on recovery efforts as much or logging things.

Now in 2017 I started focusing on regaining the last percentage of my playing again and started taking some gigs! :-)

------------------------------------------------------------------------

Currently onto 2018.....I recorded this yesterday 02/12/18. Doing some light-touch rehabilitation. Testing how long I can hold a note out for and how lightly I can do it for. Notice how there is less spasms or involuntary flexes in the chin muscles as there were in the past.

When I start to get louder, I'm basically doing that to stretch/tense my muscles really quickly in order to relieve tension, and then diminuendo into a lighter sound when possible. My camera died, but I will film the rest of my upper register today.

March 2017: Filmed my playing on other instruments; clarinet, trumpet, trombone. 

February 3rd, 2017: Playing, and speaking about my progress on larger interval jumps in rehabilitation.

July 2nd, 2016: Playing and speaking about collapsed vs puckered embouchure, tonguing vs air puffs and its affects during rehabilitation.

April 2nd, 2016: Playing and speaking about puckered vs collapsed embouchure formations in rehabilitation.

May 1st, 2014: Rehab log

January 13th, 2014: Rehab Log after acupuncture

February 17th, 2013: Rehab Log...might have already posted this under my videos.

New Facebook Group and Forum for Musicians with Dystonia

Hi everyone! Just wanted to chime in and share 2 new groups/forums I created for musicians with dystonia on facebook! ....

• Musicians with Focal Dystonia & Neurologist Sharing Knowledge and Resources
    ......This group is for Musicians with FD and Neurologists. The group is focused on scientific-based knowledge, resources, case-studies, and to share personal trial/error done through scientific method of documentation and observation. This is not an emotional group or a place to advertise; no tolerating emotional lashing out or soliciting of cures (or the source of FD) without proper documentation, publication, and that it can be successfully applied to all.
  
  
• Musicians with Focal Dystonia Emotional Support Group
  ........This group is for Musicians with FD, and focuses on leaning on each other and connecting with others who share the same struggle of coping with this disorder. Here we share our progress, relapses, and personal journey.
  
  Hoping that these groups will provide additional support, connections, and resources! :-)

More Alternative Medicine/Therapies (Part 3): Body Movement Awareness Methods (Somatics), Modifications, and Musical Exercises for Focal Embouchure Dystonia

(PART 3) External Modifications to Playing

A couple of external modifications have helped me with my dystonia. As I progressed the modifications changed over time. Here are some examples...

• Playing with the bell on the leg or off the leg...
  As a horn player (pre-embouchure dystonia) I had always played off my leg. But with embouchure dystonia, it was the complete opposite. I started rehabilitating on my mouthpiece only, and later on in the processes moved onto my horn and found that playing on my leg made things significantly easier. It was as if I had more control and my embouchure didn't have to adjust to any slight external movement that I would have had to deal with if I played off the leg. As I improved over time and regained more abilities, I found that switching back and forth between playing on the leg and off the leg was both helpful, but it just depended on the way my embouchure was feeling that day. With embouchure dystonia, you're highly sensitive to what helps you and what doesn't (even if it is just the slightest tiniest modification).
  
  When I started playing on the leg, it formed a type of  crutch for me. That's what all these external modifications are...everything is a crutch (i.e. something you rely on or lean on for support) in the beginning of rehabilitation. As I regained more control of my embouchure, I didn't need the crutch as often, so I started switching back and forth between playing on the leg and off the leg depending on how my embouchure felt. Some days it felt easier to play off the leg, and other days I couldn't play at all unless I balanced my horn on my leg.
• Using a mouthpiece with a good amount of back-pressure...
  When I first started rehabilitating, I didn't even play my horn. I focused on mouthpiece buzzing ONLY for several months, maybe even a year? and NO tonguing, and NO breath control. In one of my previous posts I wrote about how I basically had to deprogram that feeling of automatic "playing-mode" because once my body was aware that I was physically playing, it completely tensed up or locked up. Therefore, I had to forget about everything and just focus on breathing out normally (without thinking about it and without preparing my lungs through breathing exercises...just let it all go!), and also focusing on just buzzing through very loose lips, even if it meant frowning or scrunching the chin...just playing with the flabbiest most loose lips possible. But sometimes my muscles needed to stretch and squeeze...so I started doing stretches, because sometimes I had to give into the tension I felt and just squeeze my facial muscles into contorted expressions just to relieve the tension...kind of like trying to get rid of a huge muscle cramp. So later on I realized how important it was to do facial muscle stretches first, and then focus on flabby lips in buzzing.
  
  About needing a mouthpiece with back-pressure. It was necessary for me to play on a mouthpiece that provided a little more resistance than normal, because again, it provided a crutch for me. It was much easier for me to buzz and get a sound out. I had less spasms and more control. It may have not been that much more control given, but it was significantly noticeably more efficient than playing on a free-blowing mouthpiece.
  
  Lucinda Lewis does something very similar called blocked-buzzing. This is the best analogy I can think of to describe why the resistance or back-pressure is necessary in rehabilitation. She said that one day when blowing into a soda bottle and looking into a mirror, she realized that because the air wasn't being allowed out of the bottle, it resulted in air resistance against the lips. This air resistance made her embouchure muscles form into a natural embouchure because there was no room for the muscles to relax, they had to fight the air resistance.
  
  It's like jumping on a trampoline. If you are jumping on flat ground, your leg muscles have to carry a lot of your weight, and it takes a great deal more muscle strength to jump on flat ground and it's a lot harder on your joints. But if you are on a trampoline, you are still using your leg muscles to bounce in the air, but it is significantly easier because the trampoline-springs provide that extra back-pressure or support. You push your legs against the trampoline mat and it pushes back, and it's the trampoline's resistance that shoots you off into the air. It's the same with mouthpiece back-pressure! You push up against the resistance and it helps by pushing back, and it's as if your embouchure muscles don't have to try that hard to function.
  
  This only works in the case of embouchure dystonia, because of course if you don't have embouchure dystonia then more back-pressure or resistance just gets in the way. You feel the opposite; like you're trudging through mud and having to work harder to play higher and louder because there is no flexibility. But with embouchure dystonia, we are just focused on trying to hold onto a note without our muscles giving out, spasming, or fighting back. So the back-pressure of the mouthpiece helps us hold on to the note(s) for a split second.
  
  Later on when I didn't need my heavy back-pressured mouthpiece as much, I kept switching back and forth between one that was less resistant and the one that was more resistant. It's like learning how to walk again. Sometimes you get to a point where you don't always need a crutch to walk, but sometimes you do! Some days you feel great, and other days you fall back on your crutches because you're exhausted or the stamina just isn't there from working so hard.
  
  Eventually I reached a point where I felt my muscles actually start to work or that feeling of "kicking in". If that makes sense? I started to see my muscles try to form a stable embouchure without me even trying. It was never forced. But when it did happen, it grabbed my attention.
• Using your right hand to hold your mouthpiece and closer to your mouth when buzzing...
  As a horn player I'm so use to holding my left hand up when I play, that actually buzzing with the mouthpiece in my right hand helped me lessen that "automatic horn-playing mode" that I was working so hard to get out of my body. In a way it is kind of like a sensory trick (neurologist use sensory tricks to help trick the brain into thinking that it is doing something different). It may not seem like it makes a huge difference at first, but over time I found that buzzing out of my right hand helped lessen my spasms.
  
  Also holding the mouthpiece around the cup or closer to the rim with my fingers/hand allowed me to have more control. Usually we are taught by our teachers to hold the mouthpiece with only two fingers near the end of the shank so that way we use more of our embouchure muscles and air to control the buzz, rather than relying on pressure. But with dystonia, the opposite is necessary....we need to help our embouchure out by holding the mouthpiece in a secure way. If we try to buzz while the mouthpiece is loosely set upon our lips, it's a million times harder/worse and brings out the spasms and dystonia symptoms even more. At least this was the case for me! So I absolutely had to do whatever was most comfortable for me and allowed me to work with my dystonia symptoms....none of the traditional methods of playing or pedagogy could help me...I really had to completely ignore or unlearn every so called "good" habit ingrained, and instead had to trust my body and allow it to tell me what to do. I had to be highly in tune with my dystonia symptoms and how they functioned.
  
  Again, as I improved, the less I needed the sensory tricks and crutches to help me play. But these steps were absolutely necessary for my recovery when my dystonia symptoms were at their worst.
  ....same goes for when transferring over to your horn. Try playing your horn with the right hand, and no use of tongue! 
• Playing Stop-Muted
  Playing with a straight mute or practice mute in the bell made my symptoms worse. But stop-muting the bell with my hand actually helped. I don't know why the sensation of the stop-muting helped, but I believe it helped physically and also with my sound. I always sounded much better stop-muted, so I practiced this way about half-way through the second year of retraining.
• Playing With or Without a Mirror
  Before I was diagnosed, I was constantly looking in the mirror at my embouchure when I practiced because it looked as if all of my muscles were melting or becoming distorted. I became too obsessed with trying to correct my dysfunctional embouchure at first; by trying to flatten my chin and straighten my corners, but nothing was working.
  So throughout the first part of retraining after diagnosis, I had to focus more on feeling things, rather than looking at my embouchure in the mirror. However, I eventually did need the mirror, because it did help me become more aware of what my symptoms were; I could see where every little twitch/spasm occurred and on which note. I could see when the left side of my lower lip started to droop, etc.
  It was important to use a mirror, but in moderation, and only when I became less analytical about trying to "fix" my embouchure. It wasn't until I started to focus more on "feel" that I could start using the mirror more often to observe my symptoms.
• Playing other instruments
  At first this didn't help me. Actually it didn't help for quite a few years. But after regaining some abilities. playing other instruments started to help. They helped condition my muscles in a different area or way, and this allowed me to transfer those adapted muscles and use to my horn playing.
• Changing Mouthpiece Angle
  Constantly changing my mouthpiece angle to find a more comfortable position helped greatly. Even though the angle and position of my mouthpiece changed almost every 2 minutes or every day, it still helped to experiment and seek out a spot on my lips and angle that helped me regain more of a grasp on my notes.
• Sensory Work
  This should actually be logged under body-movement methods, because it deals more with retraining your sensation  - sensory tricks or body mapping.
  
  Practicing using non-focused air is key! If you can get either a small windmill to blow on, or a feather, this will help. Practice blowing with loose, wide, and unfocused air coming out of your lips. Think of the type of air you huff and puff when angry....if your lips and your cheek/facial muscles are truly loose, then you should feel the air fill up both cheeks a little, or the air will fill up and puff out near the corners of your lips, or even lower near your chin.
  
  Practice putting things up to your lips; like a spoon touching the surface of your lips, or practice blowing through a really wide straw (like the ones that they give you for bubble tea). It sounds silly, but it's a way of desensitizing your body and brain from constant "mouthpiece/automatic horn playing mode." When your brain realizes that not everything you put up to your lips is a horn, it helps. Because that's basically what it is doing. I had so many problems with drinking from a water bottle or even a coffee cup with a cap on it, just because my spasms would kick in as if I were playing the horn.
  
  Holding bubbles of air in my cheeks and mouth helped a lot to (just don't fill them up too much because it can actually open or damage a gland in your cheek, so be careful). 

There weren't too many external modifications, but the ones that I listed helped me. The exercises that I will write about next are what helped me tame my dystonia symptoms the most.

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!

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. 

More Alternative Medicine/Therapies (Part 2): Body Movement Awareness Methods (Somatics), Modifications, and Musical Exercises for Focal Embouchure Dystonia

PART 2: Body Movement Awareness Methods (Somatics).

In my last post I spoke a little about being mindfully aware during physical rehabilitation. This is a huge part of recovery for me; making adjustments and modifications to help improve or redirect my tension into a less tense state of contraction based on both mindful awareness, and understanding of anatomy/functional muscle movement.

There are quite a few body methods out there that you may have heard of. Why these methods are important is because most of them focus on reprogramming a more efficient body map. Your body map is the brains general perception and understanding of ones body/movement/function based on the sensory input it's been receiving. This carries over to how we use our bodies with our instruments.

Body Movement Methods are technically referred to as somatics. Somatics refers to practices in the field of movement studies which emphasize internal physical perception. The term is used in movement therapy to signify an approach based on the soma or "the body as perceived from within."

I'm listing them here as a resource because knowing a little about them or even taking the time to take a course in one of these methods may be helpful to you, as they can help with the rehabilitation process...it doesn't mean that one method or any of the methods are the answer to overcoming dystonia, but can be used in aiding the physical rehabilitation process to an extent.  

I've noticed universities recently incorporating classes on some of these methods which is awesome to see!

Types of Body Movement Methods or Somatics

• Alexander Technique - Most musicians know of this method, and it is not uncommon these days to see it being taught as a course or summer course within music programs at universities or institutes. Alexander practitioners are certified and teach the course between 10-40 sessions. Alexander's approach focuses on mindful action. The instructor uses guided modelling with light hand contact for detecting and guiding the student past chronic pain and effort. It should be noted that A.T. is also used to help with stage-freight and anxiety too. Suggestions for improvements are student-specific/individual-specific, and the instructors analyze the student's responses, as well as using mirrors, video feedback, or classmate observations. The practitioner is well-trained in guiding free-movement.

• Feldenkrais - Feldenkrais was highly influenced by Judo. He taught that increasing a person's kinesthetic and proprioceptive self-awareness of functional movement could lead to increased function, reduced pain, and greater ease and pleasure of movement. The Feldenkrais Method is therefore a movement pedagogy, similar to the Alexander Technique in being educational and not a form of manipulative therapy. The method is experiential, providing tools for self-observation through movement enquiry. The practitioner directs attention to habitual movement patterns using gentle, slow, repeated movements. Slow repetition is believed to be necessary to impart a new habit and allow it to being to feel normal. These movements may be passive (performed by the practitioner on the recipient's body) or active (performed by the recipient). Feldenkrais is used to improve movement patterns rather than to treat specific injuries or illnesses. This holistic focus means that the primary intention is not to treat injuries. However, it can be used as a type of integrative medicine because correcting habitual movement patterns can help heal injury, pain, and physical dysfunction.

• Mitzvah Technique - is focused on dealing iwth body mechanics in a state of motion. It is a development of the Alexander Technique, the Feldenkrais Method and health-oriented work on musculoskeletal problems and stress diseases. Each of these techniques are based on correcting common postural faults by addressing  the neuromuscular system through postural re-education. Yet the Mitzvah Technique encompasses both a unique philosophy and a set of procedures. This includes the discipline, exercises, the work that Mitzvah Technique practitioners do with their hands. The Mechanism consists of a sequence of natural body movements that magnify the ripping motion in the body. There are four components to the Mechanism; (1) The interplay of physical forces acting between the pelvis and spine, (2) the rippling spinal motion, (3) the dynamic relationship involving the pelvis, spine and head in a synchronized motion, and (4) the freedom of the head to balance on its spinal support. All of these together promote the operation of the Mitzvah Mechanism. It is designed to improve posture and release tension and stress through exercises and therapeutic table work. It claims to realign, re-balance, and exercise the entire body during sitting, standing and waling. It's aim is to replace long-term work by practitioners, to have people learn how to use the technique itself. Musicians, actors, and singers have been extensive users.
  
  *These next two listed are not so much a body movement method (except Rolfing is kind of), but more of a alternative physical therapy that integrates somatic education into it's foundation.

• *Oral Myofascial Release (MFR) - This is what I currently have experience with. Myofascial release deals with built up/rigid connective tissue or fascia in the jaw-joint and muscles surrounding the face. My acupuncturist was a specialist in John F. Barnes technique of MFR, which is a much gentler approach to releasing the tissue tension than the traditional way. Typically they will wear a glove and push their fingers against pressure points inside of your mouth (in the cheek or back of jaw) and they hold it for 2-6 minutes until the tissue releases; this is highly painful but extremely relieving afterwards.When I think of the jaw-joint, I compare it to the wrist-joint. A lot of woodwind players or typist get carpel tunnel, which is connective tissue built up in the wrist. The same thing can happen to our jaw-joint...it too can build connective tissue and cause our jaw to be unaligned, in pain, cause TMJ, or build more tension.

• *Rolfing - It is very similar to myofascial release to an extent. It is a holistic system of soft tissue manipulation and movement education that organizes the whole body in gravity. It is essentially identical to structural integration. The difference between myofascial release is the cumulative process over ten session. Although myofascial release techniques derived form the work of Ida Rolf, it does not have the same strategic planning as rolfing. The various parts of the human body relate synergistically to each other, therefore rolfing integrates the whole body or various parts of the body, rather than focusing on one central area.

• Andover Educators - This is actually not a method, but a service. I wanted to list this here as a resource. Bodymap.org is the home of Andover Educators, a non-profit organization of music educators committed to saving, securing, and enhancing musical careers by providing accurate information about the body in movement.