Sunday, December 29, 2013

More Helpful Links


I collected even more links that I've been reading through. Some of them I still have to finish! This also marks my 36th post (I believe?) in 2013. It is an odd coincidence that I also posted a total of 36 post in 2012. I definitely did not intend to do that! So here's to another year of my ongoing blog over embouchure dystonia!!!! I can't believe I've written that much and recorded so many videos. I am so happy though knowing that my blog helps others realize they're not as alone as they think they are with this disorder. I've received support messages, and also love to hear about other people's experiences with the disorder and how they cope as well. It's always interesting to find similarities in things that help, but also to see the differences in observations from one person's personal journey to another. Here are the links!

Research and treatment of Musician Movement Disorders at Hannover Music University.

Rehabilitation of musician's dystonia through retraining. de Lisle, R:

The musician’s brain as a model of neuroplasticity.
 Thomas F. Münte, Eckart Altenmüller and Lutz Jäncke:

 Dystonia: Etiology, Clinical Features, and Treatment
 edited by Mitchell F. Brin, Cynthia Comella, Joseph Jankovic:
  
Neurological Rehabilitation
 edited by Darcy Ann Umphred, Rolando T. Lazaro, Margaret Roller, Gordon Burton:

Acquisition and Loss of Skilled Movement in Musicians. Frank R. Wilson:

The Musician's Hand: A Clinical Guide.
 edited by Ian Winspur, Christopher B Wynn Parry:
Rehabilitation of the Hand and Upper Extremity, 2-Volume Set: Expert Consult.
 By Terri M. Skirven, A. Lee Osterman, Jane Fedorczyk, Peter C. Amadio:

Treatment of Musician’s Dystonia with the Use of Ultrasound-Guided Injection of Botox: An Interesting Case Report. Rajat Goel:

Dysfunctional neural activity linked to musician’s dystonia. Danny Rose: http://www.medicalobserver.com.au/news/dysfunctional-neural-activity-linked-to-musicians-dystonia

The pathophysiological basis of dystonias. Xandra O. Breakefield, Anne J. Blood, Yuqing Li, Mark Hallett, Phyllis I. Hanson, and David G. Standaert:
https://fysio.dk/Upload/KursUdd/Kursusmateriale/Tema%20tonus,%20bev%C3%A6gelse,%20b%C3%B8rn/HS%20-%20Breakfield%20Pathophysiology%20of%20Dystonia.pdf

Focal hand dystonia – a disorder of neuroplasticity? Joseph Classen:

What is Dystonia? Contributed by Prof. Alberto Albanese, MD
Professor of Neurology Istituto Neurologico C. Besta Milano, Italy:

Understanding a Career Killer: Focal Dystonia. Brian Wise:

The Performing Arts Clinic of Brigham:

CC Grand Rounds: (1) Musician's Dystonia: When the Music Stops. (Video)




Saturday, December 28, 2013

Acupuncture Update and Observations!


So far things have been going great, and I have a lot to say. Acupuncture has left me with some interesting experiences and observations!

The first meeting I had I played my horn for my acupuncturist, and (forgive me for forgetting the correct terminology) she said the type of movement in my face is sometimes referred to as windy or winding or wind. She also noticed how the right side of my face is more tense than my left. My muscles on the right side were especially tight around my jaw and pulling my lower lip muscle to the side. She said it's probably been effecting part of my playing too. I couldn't agree more! I explained how that lower lip was causing me a lot of problems, especially in my mid-to-low range my lip quivers or spasms, but had gotten better over time with re-training.

Anywhoo, the first session we did some cupping along my back. She said I must have a lot of tension in my right shoulder because it turned bright red almost immediately and it hurt. But after she was done it felt good! Then I had a light acupuncture session, had some facial massage, and a pain-relieving type of medication applied to my face. I was instructed that I am only allowed to play 15 minutes once a week, and to ice-pack/heat-pack afterwards, along with stretches and massage.

However, the rest of the following week after my first session I had the most intense pain in my face accompanied by a headache...even though the first session was light. It lasted a couple days and I had to massage my face a lot, put on the pain relief medicine along with heat-packing/ice-packing as instructed. I felt like there was a nerve on the inside of my cheeks pulsating. It wasn't TMJ either like some people think because I've had a dentist confirm that it is not the source of my problems.

When I went in the first time the slight dullness was there in my cheek (near the buccinator muscles) and in my upper lip. But after the session ended it had moved further back near my ear, and on the top of my cheek bone, but instead of feeling dullness, I felt a soreness that developed into that intense pain. I put the pictures below showing where the soreness and sometimes throbbing felt the most intense and how it moved to different areas after every session. The remaining sessions down the road where not nearly as painful, and I felt more like soreness accompanied by blood trying to flow through my face, yet some areas it felt good and the other areas it just felt sore. I found it interesting that after the pain receded, there was much improvement in the feeling of my face and gradual physical appearances/changes.

The black circles represent the specific points where I felt soreness or a blockage before or after the sessions.

Before session one: dullness in cheek area, upper lip, and a ton of tension the chin.
1(A)



After session 1: Intense pain in the areas with the black circles, and a headache in the green area. Eventually all went away and the soreness remained in less areas as in the next after this one.
1(B)


After session 2: Soreness moved to near front of ear and behind ear.
2


After session 3: Soreness moved to side of chin/jaw closest to chin, and chin area only.
3


After session 4: Soreness moved to almost all of the right side of upper lip...especially near the base or bottom of the nose where the lip and nose meet, and also soreness along the lines that appear when you smile that run from the lip to the corners of the nose and along the nose.
4


After session 5: This was interesting because during the session it was the first time we used the electric currents/stimulation on my face. Soreness afterwards primarily existed in the whole muscle area on the underside of my chin or jaw and ran all the way down the muscles on the front of my neck, and also along the left side/back side of my neck. There was slight soreness in the muscles on my forehead....but I didn't have a headache or anything. Then very slight soreness in the side of my cheek but this time a much smaller area and on-off again.
5


It was during this previous session that my acupuncturist also brought up the noticeable difference or position of my lower lip when I spoke. It looked less abnormal. She said it looked like my right side wasn't pulling that muscle back as much as it was before. I was shocked that she said this because this is one the things my family members and friends noticed about me in the past; that my lower lip was positioned abnormally when I spoke ...which I had at the time thought it was just due to aging. I told her that I too noticed a change in my chin area, and in my speech too. It was easier for my jaw to move, and I felt a letting-go of tension type of feeling going on in my face...but it's not all at once...it's as if the blood circulation is trying to break through all the channels and blockages, and some are opening up, and some still are resistant...and I think that's what's causing the soreness. There's areas of my face that feel like there's changes going on, like there is blood flow that wasn't as vital-life of a type of feeling as before.

Anywhoo, my next session is coming up this Tuesday on New Years Eve! I'm very excited!!! Despite other people worrying that any additional signs of pain to my face are not good, I can only say that the soreness has only been temporary, and I believe it is necessary when it comes to relieving tension. Sometimes relieving tension in the body is painful...I'm not saying it should be excruciating, but that I believe it is a vital step in the process of recovery, especially when after the soreness goes away, my face feels so much different and less tense than I have felt in a very long time. Even the symptoms of dystonia have lessened, and some symptoms act differently than they did before because the way my embouchure functions or the way the muscles function has changed.

Friday, December 27, 2013

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!!

Saturday, December 7, 2013

If Musician's Dystonia Were Treated Like A Mental Illness.....Oh Wait...It Already Is.

This little short comic jokes about what it would be like if a physical illness or trauma were treated like a mental illness. This reminded me of how dystonia is often treated like a mental illness or something ridiculous. 

Thank you to http://imgur.com/CWFTYoV for this awesome comic! :)

Wednesday, December 4, 2013

More Useful Links on Musician's Dystonia and Other Related Interests

There's not enough room on the side of my blog page, so I'm going to start grouping links into separate blogs titled: Links Of Interest / More Helpful Links.




Sensory Mapping of Lip Representation in Brass Musicians with Embouchure Dystonia. By Hirata, Schulz, Altenmuller, Elbert, and Pantev. (PDF)
http://www.immm.hmtm-hannover.de/uploads/media/Hirata_et_al.__2004__Sensory_mapping_of_lip_representation_in_brass.pdf

The Challenge of Diagnosing Hand Dystonia. By J. Rosset-Llobet (PDF)
http://www.tmslab.org/publications/066.pdf

Leon Fleisher: Two Hands (video)
http://vimeo.com/6684412

Sex Prevalence of Focal Dystonia (PDF)
http://jnnp.bmj.com/content/60/2/204.full.pdf

Trigger Points Focal Dystonia (book excerpt)
http://books.google.com.mx/books?id=FrEmzwNOG_IC&pg=PA168&lpg=PA168&dq=trigger+points+focal+dystonia&source=bl&ots=BRrzto52bF&sig=w3Q2uNSTttU_Gl2ImB1uNr0pRso&hl=es-419&sa=X&ei=ooWwUMbCEoLm2QWpjoFo&ved=0CC4Q6AEwAA#v=onepage&q=trigger%20points%20focal%20dystonia&f=false

Joseph Meidt Xray Movie of Trumpet and Horn Player Embouchure.
http://www.youtube.com/watch?v=tpOwuAMqFTA

Dystonia.org.uk - another good review of what musician's dystonia is.
http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/focal-hand-dystonia/musicians-dystonia-musicians-cramp

Another site that explains Musician's Dystonia well.
http://www.fcart.org/distonia/english/
Axial Musculature
http://quizlet.com/4040527/axial-musculature-flash-cards/

Gray's Anatomy
http://prohealthsys.com/site/anatomy/grays-anatomy/

What Are Lips For?
http://www.theatlantic.com/daily-dish/archive/2008/02/what-are-lips-for/220420/
On Traumatic Injuries to the Lip and/or Tongue.
http://www.simplestepsdental.com/SS/ihtSS/r.==/st.32219/t.32774/pr.3.html

About Peripheral Nerve Damage.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury#Types_of_Nerve_Damage

About Hemifacial Spasm. By Dr. Azizzadeh.
http://www.facialparalysisinstitute.com/31/hemifacial_spasm.html
About Different Types Of Muscle Strains
http://www.momsteam.com/sports/track-field/safety/muscle-tendon-strains-types-classification-treatment
About TMJ Upper/Lower Splints.
http://www.healthboards.com/boards/tmj-disorder-temporomandibular-joint/903582-lower-splint-vs-upper-splint.html

Fibromyalgia Solved: A pathology, not in the mind. By Paul Montjoy. 
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/#.Up6IWhIGPgc.facebook

What Your Doctor Will NOT Tell You About Fibromyalgia. By Dr. Paul St. Amand.
http://www.amazon.com/What-Your-Doctor-About-Fibromyalgia/dp/B001Q3M66G

On Myofascial Pain: Ropes and Lumps in muscles.
http://forums.prohealth.com/forums/index.php?threads/lumps-and-rope-like-muscles.89081/

About Piano Performance-related Injuries and the Taubman Approach.
http://www.wellbalancedpianist.com/pianoinjury.htm
and ...http://www.wellbalancedpianist.com/dystoniatestimonials.htm

On Feldenkrais Movement Therapy.
http://openatm.org/

Jerald Harscher's website: The Poised Guitarist (Very helpful rehabilitator of guitarist with hand dystonia).
http://thepoisedguitarist.com/

Greg Fellow's YouTube Channel - Spasmodic Dysphonia (vocal chord dystonia)
http://www.youtube.com/user/GregFellowsSD

Billy McLaughlin (guitar) - Advocate for Musician Dystonia Awareness. Some information on his trials and tribulations with Hand Dystonia.
http://www.billymclaughlin.com/dystonia/

Steven Leung - Violinist Recovering from Dystonia
http://www.violinist.com/discussion/response.cfm?ID=9051

Paula Brusky, Ph.D - Advocate of Musician Injury Prevention, and Music and Medicine.
http://paulabrusky.com/about

On Schools of Music Psychology
http://musicpsychology.co.uk/studying-music-psychology/

Flutist Jen Cluff Talks about Embouchure Dystonia Observation of other Dystonia Flutist. (About a quarter ways down into the blog you'll see some neat observations)
http://jennifercluff.blogspot.com/2007/08/seeing-again-mcghee-cds-wye-nfa-lip.html

The Truth About Piano Lessons (To Parents of Piano Students). By Karen Berger
http://musicalresources.blogspot.com/2011/07/truth-about-piano-lessons.html

How It's Made: French Horn. (I just had to throw a fun one in here!)
https://www.youtube.com/watch?v=sTvYxP9tjQs&list=PLgkm6q2GGDItRpEUoPMnZAfn9XRT94E1Z

Sunday, November 24, 2013

Geeking Out...

Thanks to The Horn Zone for this epic photo!
(To the left: Sheldon Cooper from The Big Bang Theory. To the right: Legendary horn player Dennis Brain)

Wednesday, November 20, 2013

Is Focal Task-Specific Embouchure Dystonia Prevention Possible?


Focal task-Specific Embouchure Dystonia is no walk in the park, and there is not much hope to be given in this area of discussion. Currently there is no known prevention. The very blunt answer would be no, it is not preventable.

The best thing you can do is try to understand the signs and symptoms thoroughly, and know the difference between dystonia and other performance-related injuries in the hopes of getting an accurate diagnosis when things get really bad; especially the difference between focal embouchure dystonia and overuse injury which are often mistaken as the same thing, but they are completely different.

The reason why overuse and embouchure dystonia are often mistaken as one another is because the symptoms during onset are very similar. The key difference is that embouchure dystonia does not elicit pain (yet it does come with a lot of tension/resistance when trying to play).

COMMON INJURIES & SETBACKS

With overuse injuries a player will usually go through a period of time where they are playing more, have added responsibilities, and they start to see a degradation in their higher register and usually start to exert abnormal pressure to try to hold it together and end up with swelling, pain, tingles, sometimes this leads to other injuries like muscle tears or nerve entrapment. The upper lip or obicularis oris in general starts to feel rubbery, stiff, sometimes there are slight tremors or twitches, and eventually if very bad, no ability to produce a sound occurs. Overuse can sometimes be a result of improper technique or bad habits, but not all the time. It can be as simple as ignoring signals of pain, or not taking them seriously enough and taking improper care. Unfortunately musicians are not taught enough about medical care or preventative care from strain injuries such as how to properly ice/heat pack, stretch, myofascial release, use of guards etc. Usually taking a month or two off from playing, ice packing/heat packing and rest improves things and playing resumes to normal. If it is a result of bad technique/habits, then focusing on those areas will show improvement.

If a secondary injury occurs like a muscle tear or Satchmo's Syndrome, a player will usual feel a striking/jabbing pain in the upper lip that feels somewhat like it's been pierced with a needle. Usually there is a bump/small lump in the upper lip you can only feel when rubbing the inside of the lip with your fingers. It will hurt when playing with the mouthpiece on that area and/or after playing for a short time in the upper register.

Never entrapment will feel similar, but mainly tingles in the upper lip, jaw, or other area of the face, and no noticeable bump or jabbing pain. I don't think this is common. There are some brass players that develop nerve entrapment in the upper lip due to a perturbing incisor tooth digging into the lip and there will be swelling that runs from the bottom of the lip up to the nose on the inside, tingling, sometimes a dullness to the pain. The tooth can be filed down or corrected with braces.

Both nerve entrapment and muscle tear early signs are tingles. If you feel any tingling at all, you need to take time to rest and properly take care of things. Even if you feel the tingles go away a couple hours after playing...it is not good enough to just assume things are getting better, especially if it occurs every time you play and/or on a consistent basis. You need to figure out what you are doing or what is causing the body to signal that something is wrong.

Bell's Palsy is when one side of the face is paralyzed/lacks mobility and the other side doesn't. This is very noticeable right away visually and physically. A player will find it difficult to eat, talk, there will be a noticeable droopiness to the paralyzed side of the face and lack of ability to move anything on that side, especially near the eye. Noticeable drooling, decreased taste, no ability to close or open the eyelid, pain and numbness behind the ear (where the facial nerves branches out from), and sometimes an increased sensitivity to sound; everything seems louder. The paralyzed side will feel extremely weak and sometimes there are twitches that occur.

TMJ - pain in the jaw joint, soreness around the back of the jaw, difficulty chewing or eating due to the pain, popping in the jaw, all of this on one side or both sides of the jaw. Sometimes lock-jaw...meaning difficulty opening or closing the jaw. Pain when trying to open the jaw wider. Sometimes headaches, and sometimes a feeling of unevenness in the jaw closure (teeth don't feel aligned), accidentally biting the tongue or cheeks. In low brass playing sometimes lock jaw. It is common to see TMJ in woodwind players such as clarinetist, sax, etc.

There are several other ailments a musician can encounter that I have not listed here such as tooth infections residing in the jaw, gland infections/mouth stones, other forms of severe nerve compression, other related dystonias like oromandibular dystonia, etc. It helps to educate yourself on the various ailments and trauma that can happen to the upper body and face, and know your anatomy and nerves, etc.

Focal embouchure dystonia onset is hard to recognize and diagnose because the signs and symptoms are very similar to other setbacks. During onset of embouchure dystonia a player will usually be going through a period of time with increased performance responsibilities or working a lot on repetitive practice preparing for something or in an environment where a lot of emphasis is focused on technique. There might be an embouchure change focus too. There are a multitude of things that are known to possibly harbor breeding grounds for dystonia. However, it is without a doubt a multi-faceted neurological disorder that occurs out of the blue and very sneaky to catch.

Like with any other injury/setback, they might be experiencing a lot of stress or taking on a lot of work, but with embouchure dystonia, despite stressors, usually the player is at the height of their playing career or feel their playing is the best it's ever been; things usually feel natural and easy and at peak performance ability. Usually they are late starters, extremely fast learners, high achievers, and not all, but most are are in leadership positions. Though it is not uncommon to see why professionals usually develop the disorder, amateur enthusiast do too and usually hold common characteristics.

During onset there is no pain. Yet a player will notice small things that occur that phantom technical/mechanical issues. For example, there might be a slight air leak in the lower register, or a slight tremble on notes in the lower register that come and go, or troubles with certain interval jumps that usually aren't an issue. There is a feeling of loss of endurance sometimes (not painful, but like can play something one time through, but the second time feeling a lot of resistance while playing and like there's a lot of overshooting notes, missing notes, or not being able to land on notes when doing certain interval jumps).

The common symptoms (yet not everyone develops every single one of these symptoms, so just because you don't have all these symptoms, doesn't mean you should just disregard it...it's usually a combination of any of the following) of embouchure dystonia can be: range-specific (having troubles playing in one register), dynamic specific (having troubles executing decrescendos but not crescendos or vice versa, troubles playing quiet, but not loud or vice versa), articulation-specific (can articulate scales going upwards but not downwards, or vice versa, or no ability to tongue at all, or can articulate at a fast tempo, but not at a slow tempo or vice versa), tempo-specific (can play things fast, but not slow or vice versa). Other signs are lock-jaw in low brass/woodwinds with no pain, aperture clamping (the aperture closing shut randomly while playing or spasming shut), if symptoms are most noticeable in the tongue (inability to articulate passages) or very intense it can carry over to other tasks like drinking out of a water bottle and sometimes speech (tripping on words). Most all, but not everyone, notice a lack of symmetry to the face - not so definite as bell's palsy, but one side of the face will seem less responsive than the other side. Air leaks are common as I stated before too.

Usually the player will increase their practice time or focus on correcting these specific issues with technique, or the opposite, trying to rest, but to find it only made things worse. The symptoms are gradual and they seem to layer on top of one another over time.

For example, I noticed a small air leak in my low register, then later on I noticed I had troubles decrescendoing while doing long tones, my muscles would give way. Then I couldn't do large interval jumps, I had to slur them. Then I had troubles tonguing things in descending passages later on, and when I looked in the mirror, my embouchure would look stable for 5-10 minutes, and the second time I tried to run through a passage, my embouchure started moving a lot all over (looked like I was chewing a wad of bubble gum in my mouth while playing). I started to notice loss of smaller interval control, and after focusing on my lower register studies, it made things worse, and after taking time off, I had uncontrollable and intense spasms and tremors.

Some players will go so far as to continue playing on an unstable embouchure due to performance responsibilities and/or obligations, and this increases a secondary injury factor. Some will develop overuse symptoms on top of their embouchure dystonia symptoms because they are forcing their embouchure to stabilize via pressure or just by continuing in general and result in swelling, etc. and at worse a muscle tear, and possibly TMJ/jaw strain or pain. Even if there is a secondary injury, usually after resolving it, the embouchure dystonia remains. The key difference is that overuse injury/syndrome and other injuries is that they can be prevented and/or cured with rest, medical care, and significant time off. Dystonia will only worsen over time with or without rest, and correcting things will not help either.

You can see why onset is so hard to catch and especially how it can be mistaken as other setbacks during the early stages. Even though we don't know the etiology of embouchure dystonia, we know that it manifests as a neurological disorder. Not only is it neurological, it seems selective, and with that said, it is most likely inevitable. There might be no stopping it even if recognized. Hand dystonia is much easier to catch and has some cases of prevention during onset, whereas embouchure dystonia, not so much.

Even if it was, the embouchure is extremely difficult to navigate while having dystonia and there are few rehabilitation strategies if none that have been documented, tested, or that can be applied in the hopes of prevention.

That is why I document my rehabilitation, because no one else has ever attempted to publicly in history.

EMBOUCHURE DYSTONIA PREVENTION

It is not realistic nor correct to tell musicians, "Avoid placing yourself in situations where you are playing more than normal, avoid bad technique or bad habits sneaking in, don't use too much tension, and avoid using too much pressure, try to take care of anxiety or nerves, etc. " BECAUSE EMBOUCHURE DYSTONIA IS NOT A RESULT OF BAD HABITS, BAD TECHNIQUE, PRESSURE, BUILT UP TENSION, LACK OF AIR SUPPORT, PERFORMANCE MENTALITY, or whatever else you want to try to re-label it as!!!!! (Sorry, I got a little angry there...but this re-labeling trend is part of the problem and a bigger issue to address in writing later).

By telling musician's to avoid common situations that we are all usually placed in at one point or another, is like telling a musician, "You might as well not try at all. Your safest option is to not play music at all, because you might injure yourself or develop a rare neurological disorder called dystonia."

If you notice a change in your playing and it seems to be of concern, your best bet is to keep a journal (written and/or video) observing your playing and document any changes over time. If you feel like it might be dystonia, focusing on standard technique or repetitive tasks in your playing will degrade you further. Avoid it if can, but even avoidance won't help necessarily. If you can take time away from playing, do so not to rest, but to carefully observe your symptoms and note changes.

If you feel it is embouchure dystonia, then stop playing immediately, remove yourself from your current environment if can, seek out a neurologist who has diagnosed and/or researches embouchure dystonia....though most will not diagnose you during early onset because it is too early to tell, they might (not guaranteed) provide you with some temporary medicine to try tetrabenazine/artane, risperidone, etc. that might provide temporary relief...however, these are used to suppress symptoms, not cure them, and there is no promise it will regress the symptoms. It is important to get tested in order to rule out any other possible ailments in the blood work and brain scans.

Other things you can do is try increasing your dopamine levels through dopamine supplements or anything that might affect serotonin too. You can also try tremor supplements that are not drugs, but nutritional supplements that can be found online. Look for supplements for essential tremors or tremors in general. I do find these have helped me, but again it's not the same for everyone. There's all kinds of alternative holistic therapies and supplements you can try.You can look at my left hand side-bar and it covers several alternative-medicines and therapies.

If you have dystonia, a sensory trick might work. Does touching areas of the face when spasms occur cause the spasms to stop? does placing something between the teeth cause things to stop? (like a cotton ball, mouth guard, etc.).

I also would suggest that if you think it is embouchure dystonia...and even if it is not....you should start implementing stretches in the upper back, neck, jaw, tongue, and face every day. This should already be a part of any routine, but not often taught to students. It helps take away tension from fighting the symptoms.

Sadly there is no preventative measures. Everything that I have suggested here can only aim to possible temporary relief, and/or reduce of symptoms maybe at best.

Like I stated before, educating yourself on signs and symptoms is best and seeking out help when it is time. After you have been diagnosed by a reputable neurologist, seek out a rehabilitation practitioner who aids in the recovery process.

Tuesday, November 19, 2013

Top 9 Things You Should Not Say to Musician's with Dystonia


A lot of these statements are very flawed and I have sadly heard pretty much all of them at one point in time. Please. Just refrain from talking if these are your general assumptions of what dystonia is or if you can't think of anything better to say. Unsolicited advice is never desired from those who really don't understand the disorder or don't have it (even professionals) and just feel like saying whatever is on their mind.

1. "I'm sure there are some errors in your practice habits or way of playing that brought you to the condition you are in today. It must have been something you did wrong."

2. "It must be psychological. Stage freight, anxiety, or perfectionism."

3. "By the way, do you know this excerpt? Can you play it? Can you even play it with me?" or "I'm auditioning for this orchestra. How about you? Oh yeah, you have dystonia."

4. "I noticed you have a tremor in your low range. If you focused on improving your breathing, this would resolve a lot of your playing issues," or "If you focused on singing and hearing the melody (audiation) or on just the tone and nothing else, you can play it. If you can sing it, you can play it. If you can hear it, you can play it."

5. "Sometimes I think musicians with dystonia are just faking it. They want to avoid succeeding, so they develop a mental block. Musician's Dystonia is not a real thing. If you would just reach out to so-and-so (some professional musician who has never had dystonia)..."

6. "You should join an ensemble or enter this competition! Common, you can do it. It's not that bad."

7. "Expecting to overcome dystonia is not enough. You need to dream bigger. Maybe it's a confidence issue? You need to believe in yourself."

8. "Why not play something else like ___(enter name of least favorite instrument here)___. Why not try ___(enter name of least favorite music subject here)__."

9. "(Even though I've not taken the time to read your blog or witness how far you've recovered already or how you help others, let me give you some unsolicited advice). I can help you overcome your dystonia, even though I've never experienced it," or "I've overcome dystonia, I don't really care about your views, just my way of doing things, and I'm going to charge you $200.00 dollars a session, even though I can't guarantee you'll overcome it."

10. This is the best thing you can say to a musician with dystonia: "I may not understand what you're experiencing, but I support you and have faith in you. You're a strong person. Always remember what a great musician you still are...because that great musician is inside and has accomplished a lot. If there's anything I can do for you, let me know, I'll gladly listen."

Thursday, November 14, 2013

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. :-)

Saturday, October 26, 2013

Busy Bee



It feels like it's been ages since I've found time to log in and write a blog! I promise a video soon. I've been super busy, but life is good!!!

I've been focused on a huge list of things that need to be completed at CU, and also with new employment too. I wanted to make sure that my work was also music-related, and luckily I've been provided that! I help students test/pick out instruments, upgrade to intermediate or professional models, and help finance them! It's provided a great learning opportunity since I get to deal with the "music business" aspect of the field, and better understand instrumental rental and finance contracts. I also enjoy meeting all the teachers, and students/musicians.

This last week I ordered a new mouthpiece to try. I've been playing on my gold plated Farkas DC throughout rehabilitation, but you know how much I love experimenting to see if a size difference helps even the slightest bit. So far, my G17 helps with my mid-to-low range where my symptoms primarily effect me, but it lacks comfort and even harder to pivot from range to range...so my larger interval jumps are even more difficult to execute.

I decided to give the latest Dennis Wick-Paxman a try, so went ahead and ordered a DWPAX-6. It looks like the size of a trombone mouthpiece, but I want to see if this peculiar shaped mouthpiece will "feel" different enough to help me re-sensitize and also help with the size of my lips. I have to say I'm quite excited. It's larger, and it may help with my lower lip that can't seem to fit into my other mouthpieces which is causes me a ton of difficulties. I wanted to try something much bigger than what I typically play on. I am excited and will upload a video once it arrives and I try it out for a bit!

As far as my playing, I've definitely been building up my high chops. Well...I mean...high chops for me now classify as my treble clef range (space C up to line F on the top of the staff)...haha! Not like before where I didn't classify anything as high playing unless it was well above the staff....baroque stratosphere.

I'm really happy! I've now started playing excerpts!!! My large interval movement/jumps have been getting better. It's hard to describe how, but here's a go at it.....I've found air attacks help me land on lower pitches after jumping off a higher one, causes me to not have as many spasms. Therefore, there is a TON of large movements in my face, yet the feeling of "lack of control" and chances of spasms/involuntary contractions has lessened significantly. Because it is hard for the viewer (visually) to tell the difference between what movements are dystonic and which are intentional/a result of my air attacks, it's hard to see the improvement.

I'm able to tell there's a difference in improvement, because I "feel" it...but I think for the viewer, the best evidence is in the way I sound, despite all the large movement. It "sounds" more comfortable to me and like it's "easier" to play, despite all the movement. For me, a dystonic movement is one that doesn't enable me...one that is out of my own control.

Anywhoo! There's a lot to catch up on, and hopefully I'll be able to keep up on the blog, at least once a month at the least. That's all I have to write for now! Thanks for reading, and for your support throughout my recovery.....I remain optimistic as always!

- Katie

Tuesday, September 3, 2013

Treble Clef Range and Adding in Tonguing Begins!!!



I've been so happy since the recording of my last video! That recording went amazing and captured a lot of the exciting improvements! But even more exciting, is the fact that there's been more progress made since then. I will record a video soon! Lately I've been able to go higher, and noticed my chin finally started to flex more in my treble clef range. It's working hard just like it did in my middle range before. My lower lip that was sticking out, is much more flexible now, and I feel I have a little more control over it. I can practice for about 2 hours before my endurance is shot.

The downside about improvement as I am able to finally venture higher into my range is I have to take an even longer break after practicing. I have to take 4-6 days off just to make sure my face feels refreshed and ready to go again. I'm being very careful.

In the past, I was very concerned about how long I ventured into my treble clef range because it often, if not all the time, caused tension to build back up quite fast. I spoke about how if I played in my treble clef range for a bit, and then tried to jump back down into my low range or mid-to-low range, it would be difficult for my embouchure to relax again and for the tension to go down. Playing in my treble clef range (i.e. from space F up to space C) was very taxing on my facial muscles before. It also effected me in the way that I could play a repetitive passage in my treble clef range for a couple seconds before the tension took over and my embouchure collapsed. It was a huge combination of the tension restricting me, and lack of endurance....so two separate things, yet, both effected me when I ventured higher. 

The tension from the dystonia is harder to tell how it effects me in my higher range, since you can't see any involuntary contractions, or twitches, but you can tell it limits my mobility as my face seems to have a hard time just relaxing in my higher register, and my chin, just like how it use to react to my middle register, couldn't make up it's mind on whether it wanted to flatten out or bunch...it fluctuates as I hold a note out. 

However! Recently these issues have been lessening since last month. Today during practice, I noticed my endurance was a million times better than usual. As well, even though I felt tense in my face and thought maybe I was going through another relapse, it didn't take long to iron out the tension. Then after the tension was relieved, I noticed how much more the control of that lower lip sticking out was improved and felt less limp, and the movements in my face as I tongued was a ton less than before, and the movements in my face when I jumped around were less of that "stuck in the mud" type of feeling, even on my open harmonics it's less noticeable movement and difficulty in my playing. My muscles don't seem to be freaking out as much as they usually do, nor does it take a long time to relax them after playing in a higher register. The air leaks in my treble clef range didn't kick in until about 2 hours into practice, and also didn't show up on my "space C", but on  my "line D"...so my range has expanded one more note! WOOHOO!!! :D I can usually play up to a high F, but my lack of endurance restricts me to only be able to reach the note 2 times if lucky. But, I can usually go through a practice with a range from "space C" all the way down to "pedal B" right below pedal F. 

A lot of people might think...you can practice for 2 hours? Then you must have good endurance. Not necessarily. With dystonia, practicing for 2 hours includes a lot of breaks and waiting...a lot of stretches! More stretches than practicing, and also taking the time to message my face inside and out, or even eating ice or putting some in the side of my cheek while I take a break, and playing in my pedal range to relax.

Majority of practice time is spent on relieving the tension, and the last quarter (sometimes it's half and half) of my practice, near the end, I test my larger interval motions, or melodic passages, or test to see how my tonguing, etc. is, and I'm always doing warm-down or lower pedal playing exercises between treble clef playing just to make sure I counteract the high playing with lower vibrations/playing ...I feel the pedal range vibrations around my embouchure help relax the tension. I feel this has been a huge part of my recovery too! Thank god for my pedal range. It is my life safer, along with buzzing, and stretches. 

Now that I feel it is safe to, and my muscles are adjusting to my treble clef range. With much carefulness, I am now beginning to focus on adding tonguing back into my playing, and holding notes out in my treble clef range....and of course...this requires the emphasis of good breath control to support it all; which thank god, I'm also able to do now. 

I can't wait to record my next video!!!! However, it may be in a week or 1.5 weeks, since I need time to rest. So far things are going great!!!! I will be reconnecting my blogger account with my google+ profile since I quit facebook. I need to focus more on myself, and getting things done. Be back soon! 

- Katie! :) 


Thursday, August 29, 2013

August Shared Article Post

Link: Treating Musicians With Focal Dystonia



I really like this article (link above picture, can click on title), as it does a brief yet understandable outline of general treatments, and the references at the bottom are great. I'm a huge fan of Dr. Eckart Altenmuller's research and work. I'm always searching for his published articles. He's been researching musician's dystonia way before anyone knew practically anything about its existence.

I especially find the last paragraph over pedagogical and technical retrainingergonomical modifications, and neuromuscular rehabilitation, to be inspiring, as it reinforces my positive thoughts on what I've been doing in my rehabilitation. I focus heavily on modifications and retraining as you have seen in my videos and writing. Though, I still have not given a single thought to even letting a needle come near my embouchure...meaning botox injections....No. Way.

Sunday, August 11, 2013

Tuesday, August 6, 2013

August 5th Vlog: Melodic Playing - Post Relapse/After Relapse Has Passed

There's 4 more videos loading, but thought I'd publish the one that finished uploading.

This is actually the 5th video near the end of my practice session....and believe me, my endurance was running on empty by this time, but I was still testing out my larger interval motions and melodic passages to see what areas were most difficult. I wanted to post this one first since it's the only video I've recorded were all I do is play and don't speak. I was too focused on feeling things out.

*Note of caution: I don't usually ever play melodic stuff or etudes. It can be very tricky since I don't want to form old habits or make the tension in my face worse. I'm trying to rebuild a new pathway/way of playing with less tension. It is only now that I am able to test more melodic playing to see where the tension is when I try to play specific things. I do this every once in a while to see where things are from a broader view.. Anywhoo, this is not how or what I usually work on with my dystonic symptoms, but watching me play melodic pieces or passages can give a wider view of where the tension still effects me, that non-dystonic musician's might understand or see better, rather than me trying to explain it.

Video Part 5 August 5th - posted first:

Other 4 videos are the same where I'm doing more melodic playing, but talk here and there. You can probably tell by watching, I'm not having troubles with involuntary contractions/sporadic spasms....
.
...Though you see a lot of facial movement going on due to tonguing, these movements do not feel dystonic...that's the best way I can describe it. Also even though there may seem to be a lot of facial movement it is less than what existed in the past too.
These facial movements do not hurt, nor do they feel out of my control but weirdly natural and relaxed. I feel like the facial movements are my muscles finally working together towards a similar task perhaps, but without the opposing (dystonic) muscle fighting back...so it feels natural. I also think partially why there's so much movement is due to lack of endurance...another very distinct separate feeling from dystonic-type feelings/movement.

The main issue that's most noticeable right now is regaining control/flexibility in that lower left lip. I've been trying to work out the tension there, but it feels limp or non-responsive more than tense, but slowly regaining mobility as you can tell it rolls in and out more often naturally on it's own, but still pretty tough to work with...stubborn! But at least it's not as frustrating to work with as working with relapse symptoms. I think that's the hardest obstacle to overcome is the glitch-like spasms and contractions that make it impossible to even hold a note or grab a note.

But since this was after a relapse/post-relapse where I have an extended period of less difficult time playing; you can tell how much better and at ease my playing is compared to the last video posted on July 31st where I was going through heavy relapse symptoms.

Video Part 1 August 5th:





Video Part 2 August 5th


Video Part 3 August 5th


Video Part 4 August 5th





Wednesday, July 31, 2013

July 31st Working with Relapse Symptoms - Vlog Practice

 Yay! Finally got a video up. Haven't been able to find a place to record since moving to Denver. Luckily University of Denver music building was open yesterday evening...first time I heard myself play out loud/outside a mute in a longgggg time. 

Yesterday's session was pretty rough due to the relapse symptoms. But good that I captured it on camera...approx. 1 hour and 20 minutes of playing. [Also, I'm going to upload a video of what my playing is like after the relapse has passed; Link will be highlighted -->here ...as soon as it's posted.] 



You can see the areas where I struggle the most with the symptoms, but also how I work at ironing them out/reducing them. Tried to not talk a whole lot...but you know with me, I love talking/writing.

Anywhoo, here's the videos!! Lots of slow methodical practice. I was happy with the work done!!!







Part 1 - prep-work...and pedal range (working way upwards)





Part 2 ...more pedal range work and middle register, etc.



Part 3 - ...a bit of excerpts near the end. Thought I'd have a couple seconds of fun! :)



Part 4 ...arpeggios/open-harmonics, and octaves.