Wednesday, September 11, 2019

September 2019: Health Update

I don't think I've spoken about this on my blog because it doesn't really relate to FTSED. However, I thought I should share some news.

These last two years have been pretty tough on me physically. To make things short, in May of 2017 I started experiencing painful symptoms and found out I had miscarried. Yet the pain continued to progress....which correlates to what's going on now (posted much further below).

This previous summer I had my gallbladder removed, and due to all the medical tests leading up to it (that I haven't been able to do thanks to not having insurance foreverrrr) I found out I am dealing with a slew of several things.

First of all, since I had open heart surgery as a child, they had to do an ultrasound to make sure it's doing okay before I undergo surgery. They basically told me that I need to majorly improve my health or it won't be too long until my heart needs a stint or some type of work. They didn't say anything in particular was wrong but that this is something I needed to work on based on my overall health and the several things affecting me.

To make matters worse I showed up as anemic. And during surgery I was having troubles breathing....came to find out I have sleep apnea.

Then in late June I went to a physician to check out my reproductive health since all of this physical pain I've been in since 2017 finally got so out of control it got in the way of me being able to do anything. I stilled showed as anemic, and after doing a couple more tests and an ultra sound, turns out I had 2 large masses in my uterus. Due to my history, health, age, and ethnicity, that I am high risk for ovarian cancer. They needed to perform a biopsy. Well this took forever to get done because I had to switch providers and clinics, etc. So in July I was in so much pain that I begged for something to help lessen my symptoms. Was put on a different dosage of birth control, but it only lessened one of the symptoms, but for the most part I was still suffering, and started to experience vertigo. Then they started me on a different type of hormone drug that provided more progesterone and I cannot express how much my behavior/personality has changed. Although it's helped shave off 3 days out of the month I'm not going through this craziness.

Fast forward to September/now, I was finally able to get the biopsy this week. I will hear back soon as to whether anything is cancerous. The hysterectomy surgery is already in the books for late November. Still have some tests to do before then, but looking forward to not being in physical pain anymore. For now, I can only hope that whatever is happening isn't anything worse. Will update when I can.

All-in-all it's been extremely stressful and emotionally exhausting. I won't go into detail here, but just happy things are getting done and this will soon all be over with. That's all I've got for now. I'm holding onto as much hope as I can.

- Katie


Monday, August 26, 2019

New Beginnings...

I've been doing a great job of keeping my blog going this year. More so than other years. However, recently I was hired by the University of Denver Newman Performing Arts Center in Music Education Outreach and Engagement and excited to dive into my work there. In other words, I'll be pretty busy and not sure how much upkeep I'll be doing from here on out, unless there's a holiday break (I'll write then). I love my job so far and I'm just as passionate about it as I am about my focal embouchure dystonia blog. Thank you to those who have been following! I am still doing a lot of writing in progress for other publications, and will write more about that soon. I also have been working extremely hard to fit in all my spare time on exercise and my health (thus one of the pictures is of red rocks where I hike and climb stairs). I've been dealing with some pretty difficult medical setbacks and it's been a crazy summer filled with hospital visits, appointments, trying to find the right insurance provider, and affording it all. Hopefully I'll be back here on the blog soon. Until then, I hope everyone has a great start to their (academic) year!















Wednesday, August 21, 2019

Standing with the Great or the Broken



Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 2)

Part 2 from Musicians' Health Collective Website.

I'm a huge fanatic. <3 What a great interview with saxophonist Chelsea Shanoff, and what bravery for her to speak about her surgery and loss of hearing afterwards. Completely support her and hope her recovery goes smoothly. I'm so glad she also addressed the need to be open:


"Recently there has been more awareness surrounding musicians’ hearing health and the shocking number of musicians who have some kind of hearing loss, whether from the hazards of being a musician or from something unrelated, like illness. (Side-note: Did you know saxophonist Chris Potter has SSD from a condition called Meniere’s Disease?)

I think it is great to talk about musicians’ health in a broad sense, but until we actually are able to talk honestly about the specifics of our own struggles, we still have a ways to go in educating others. Recovery from any kind of brain injury or surgery will look different for everyone, but in the case of my condition it involves the brain adapting and habituating to the loss of the balance and hearing nerve on one side." 

Tuesday, August 20, 2019

Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 1)

From Musicians' Health Collective Website (Part 1): Chelsea talks about her jaw problems while playing her instrument and the eventual findings of a tumor causing it...

Why it's important to get diagnosed!! I know sometimes it takes forever to find the correct specialist and diagnosis, but at least get the big stuff out the way; MRI scans, blood work, nerve conduction tests, etc. Ruling out anything more severe is the best thing you can do. Nothing wrong with precaution when experiencing any abnormal symptoms. 👨‍⚕️🔍💙

http://www.musicianshealthcollective.com/blog/2019/8/20/guest-post-chelsea-shanoff-on-brain-tumor-diagnosis-healing-and-reflection-part-1?fbclid=IwAR2x-ug-OjumPQA__1d_g6lt13ndYMhr9GZ0iwV1WtXzXEIgyPPYzaWwYew




Sunday, August 4, 2019

Musicians' Well: Kristin Davidson on Dystonia: Another Kind of Recovery

From Musicians' Well website: Horn player Kristin Davidson shares details on her journey coping with Focal Embouchure Dystonia. Thank you Kristin for speaking out about your life, family, and love for music!

"...After injury you will become a completely different player....I would add that it is also true that in order to sustain yourself, you have to become a different person entirely."

Wow. That statement hits close to home. Can't tell you how deeply this type of setback changes a person. What I would give to be the former me - not just as a player, but as a person too. 💔

https://www.musicianswell.com/stories/2018/12/27/kristin-davidson-on-dystonia-another-kind-of-recovery?fbclid=IwAR3oARmXskbfYA0xJBvloNbCdpo440VrWRr_sgCJj-mw8UNWLugXsqEuiUY


Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

What a great read over Task-Specific Lingual Dystonia!!!

Note: I can't help but say, "Of course Focal Task-Specific Dystonia is associated with occupation....no doubt about it!"

https://www.frontiersin.org/articles/10.3389/fneur.2017.00649/full?fbclid=IwAR0zsxluSQs4JW9a0iAfXxmm0JU5jfJjGSa5vAZ1-CuI8fN11Yj2AnJT94w

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

Wednesday, July 31, 2019

Chiropractic Work: Neck Traction



Following up on my previous post about the chiropractic work being done on my neck. In the last post I mentioned how I purchased a years worth of chiropractic sessions.

A few months ago my chiropractor said my upper spine/neck needed additional support outside of the sessions; not just stretching the spine manually, but mechanically too. The spine in my neck is too compressed (including my jaw) and they don't know why. He said I needed to buy a cervical neck traction device. Reminding you I've had severe neck problems since a teenager.

I ended up buying the inflatable device (very effective and only 17 bucks) rather than the "craddle-sling" you see most people use. I also bought a professional back massager device as well.

Anyways, the point of traction is to pull the head up and away from the neck, stretching the muscles and ligaments around the vertebrae of the spine and expanding the space between the vertebrae. This gives the muscles the opportunity to relax and for pinched nerves to release further.

At first I thought, "This is like a neck pillow you buy for traveling. How is it different? And will it even make that big of a difference?"

I can't even begin to explain how much it has helped me! It's completely resolved my jaw compression on the right side and I no longer experience spasms at rest or accidentally biting my tongue. I also breath better when I sleep because my neck and shoulder muscles are completely relaxed.

After I had my gallbladder surgery I didn't use it for a couple weeks and I immediately started to feel my neck muscles starting to pinch and pull deep down.

Nothing makes you realize how much pressure gravity puts on your body than after experiencing chiropractic work. I keep thinking, "How have I survived without this?"

The only other time I felt this much relief was when I had 10 botox injections in my cervical muscles when 14 years old to release a severely pinched nerve that they weren't sure was cervical dystonia due to similar symptoms.

I know chiropractic work isn't for everyone, but I just needed to keep up-to-date with what has been helping me. This in return has helped me with my playing as well!!! I feel way less restricted due to my jaw moving more freely. 📯🎶 

Hearing Your Former Self Play

I had my ipod set to random while working out and it started playing some classical pieces. I was going to change it but listened instead. For a while I thought, "Oh wow! I really love the principal horn player. What a gorgeous sound...who is this?!?!"
I thought it might be a european player, but I looked down and it's me. How embarrassing. Only has happened twice in my life - where I didn't recognize my own playing. Must have not heard myself play symptom-free in years. haha!
📯📯📯📯📯📯

Wednesday, July 24, 2019

Practice Time with Family!

Allie (my twin sister) and I are practicing at our old stomping grounds - The University of Northern Colorado, UNC! So many memories here!! 💕

Saturday, July 20, 2019

The Point is to Understand


Similarly professional and advanced musicians know what it takes to play at their level/caliber, but very few understand career ending setbacks because it requires experience - having gone through the same devastating injury/disorder in order to help others.

This goes double for those who help others with focal dystonia because research has shown that the most effective rehabilitation strategy so far (besides DBS/brain surgery coming in at #1) has been retraining the sensory and brain pathways in order to restore motor skills. This is no easy walk in the park.

Who understands the process better than musicians with the disorder and professional neurologists who invest years of research into studying it? A neurologist who is dually a dystonic musician and medical professional would be highly sought after if one where to exist.

Because there is no known cure means that treatment is symptomatic. Just because there isn't a cure or etiology doesn't mean musicians with dystonia should ignore their symptoms.

I say this because I've had several brass professionals and teachers tell me and other dystonic brass players to ignore the symptoms, not get caught up in addressing individual symptoms and instead focus on musicality and air. There are so many things wrong with that advice I could write a book!

That's like going to the doctor and telling them, "I don't know what caused this cut on my leg, so please don't treat the symptoms/bleeding!"

There are a number of things that could have caused the cut, but what really matters right now is visually obvious. Even if the bleeding isn't successfully stopped all at once, we must attempt to and go from there.

If you look at any disorder or illness that doesn't have a known cause or cure (there are a lot), the only solution is to focus on alleviating the symptoms! This is important because finding ways to decrease the various symptoms (even if not a cure) leads to overall improvement and in return this increases the person's quality of life.

Treatment is not just about finding a cure. Treatment involves overall well-being of the afflicted person and giving them the tools to reduce their symptoms as much as possible so that even if they can't completely overcome it, they can come very close. In fact, enough to manage it and re-establish their love of playing again. It gives them hope. Most importantly they witness progress and it's through this process of understanding we learn more about how this complex disorder works!

We can't just throw everything we know about it as a neurological disorder out the window just because there is no cure yet. I say this because again, I have been told (along with other dystonic brass players) by professional brass players and teachers that due to there being no cure we should dismiss it as a neurological disorder (as if doctor's randomly labeled it focal dystonia for no good reason and none of the research and evidence means anything).

Do you think telling a musician with dystonia that it's all in their head is going to help when you don't even know anything about the disorder, have never had it, and you're just making assumptions and believe you're right because you've evading injury or due to your status/reputation makes you more qualified to give advice?

Let me tell you the quality of skill level and good habits in a musician does not make you less likely to develop dystonia or avoid an injury.

In fact, you are more prone to developing focal dystonia if you are healthy and at a high skill level - e.g. an established professional musician, advanced or highly skilled amateur, classically trained (e.g. a classical musician), natural, fast learner/have always excelled in your studies and playing, in leadership positions, at the height of playing level, male gender, middle-aged, have writers cramp or it runs in the family or dystonia does.

Telling a musician with dystonia to ignore the symptoms is ridiculous, or to stop retraining with another dystonic musician just because they are not a doctor is illogical (how the hell else are we going to gain any insight or move forward?). Equally it's unfair to tell them that no neurological rehabilitation method is worthwhile just because it's not a definite cure. The same goes for telling them to not try standard medication prescribed (for some it actually helps). And more aggravating is when others tell musicians with dystonia to not trust neurologists.

Yes, there are few neurologists who really understand it in-depth, but the ones that do are on our side and researching it because they want to help us. We must not forget that. We need them, and they need us in order to find answers.

By telling musicians with dystonia to avoid seeking the help of others who have it, avoid neurologist, ignore the research, ignore the symptoms, and only trust professional musicians who have never dealt with an injury/disorder is highly presumptuous, misinformed, dangerous, and just plain stupid logic.

Yet this is how things continue to be. Can't tell you how many times I've been told to go talk to "so-and-so" (insert name of random professional musician who knows nothing but how to give advice on mechanics, technique, breathing, or who tells me it's all in my head). It may be out of good intention but it's more harmful than helpful...and disappointing.

Stop with the assumptions, bad advice, and not giving musicians who actually have experienced career-ending setbacks and understand the situation credit.

Just like the treatment of most other neurological disorders, focal dystonia treatment must be individualized and requires great depth of understanding; not only from a medical standpoint, but from the viewpoint of the afflicted. Therefore, both sides (neurologist and dystonic musicians) must come together to create a holistic and cohesive approach. 💕

Friday, July 19, 2019

Thank you!! 500 Followers!


Today I got a notification that I reached 500 followers on my facebook page Living with Embouchure Dystonia!

Although I started my blog in 2011, I didn't start my facebook page until six years later. At the time I didn't keep it updated because I don't like attention; I'd rather be found when needed (like a library book) than posting all my stuff up front in a more mainstream manner. Thanks to the suggestion of a highly encouraging friend, it wasn't until this last year I really started to utilize the page for sharing my blog posts and I started a website.

I know that this complex and mysterious disorder (Focal Task-Specific Embouchure Dystonia) scares serious brass and wind musicians since most avoid speaking about the subject of injuries, disorders, and setbacks in general.

It is no surprise that several (but not all) musicians who have never been through a major debilitating setback refuse to believe such a disorder exists; many don't believe you can get injured by the simple act of playing music; that setbacks can be altogether avoided if you have healthy habits and proper mechanics; and that if you end up injured or develop a disorder then you are doing something wrong....
......which all 4 of these beliefs are false, and to be honest - ignorant. You can't label everything as "bad habits."

Sports medicine professionals and professional athletes who have gone through injuries or who have dystonia would wonder what is wrong with you if considering any of the above as the "problem and answer" to majority of setbacks that happen.

Therefore it makes me feel hope knowing that there are a handful who are able to look past the fear and instead support the understanding of this complex disorder and know how important it is to break down these false misconceptions surrounding musician injuries and disorders. The gap between the medical field and musicians must be bridged. It's never going to happen if musicians keep avoiding the subject and lack education on it.

Musicians with injuries and disorders don't ask for pity (it's not like we have leprosy), but instead respect and understanding in knowing that setbacks are not easily avoidable, resolved, or a simple matter that can be summarized and labeled as the fault of the musician only/themselves.

Many don't speak out about their injuries due to fear of being judged, damaging their reputation, or because they can no longer put up with the disappointment in their peers and colleagues who cannot or refuse to understand their situation.

And often times peers and colleagues don't value an injured musicians perspective and deep insight because they hold a false (and harmful) belief that "injured musicians (even if a close friend or long-time colleague) must not know how to take care of themselves and need the advice of a non-injured musician who has evaded injury....otherwise they would have never been in this situation to begin with".

Thank you again to those who have always been supportive and open-minded. I will always continue to write for those who have it, those who want to understand it (from a person's perspective who actually has it and devotes their life to understanding it and overcoming it), and for my own self and wellbeing.

I know this wasn't the most heartfelt thank you, but please know it really does mean a lot. You all are making a huge change in the direction of the future for those who do end up injured or develop a disorder (believe me, no one ever sees it coming or expects to end up in such a situation...NO ONE).

It's important to keep the doors of communication open, as well as minds! 😊 ❤️

- Katie Bergløf

Friday, July 12, 2019

Inspire and Awaken Others

I love writing about taboo things like musician injuries and musician disorders; more specifically focal embouchure dystonia and raising awareness....god forbid it ever happen to you someday. No one ever imagines it could happen to them especially when they feel in their prime and it comes out of left field. Wouldn't wish it on anyone.

It may not seem as life-threatening as a lethal illness, but losing what you love, your calling, your career, greatest pursuit, and what gives you purpose...it's as painful as losing a loved one, it leaves you as helpless because it is a form of degraded mobility, and it can deprive one's life of meaning...and yes, even some find it hard to keep the will to live. Nothing can fully replace that loss. Don't tell them to try to move on with a new instrument or profession.

When your entire life revolves around something and you've invested years into it, disassociating is impossible for some. It's a loss of self and identity too.

That's why I continue to write. So I can relate to those who are going through the process and understand how truly frustrating and debilitating it is on every level during the aftermath and grieving process - physically, emotionally, mentally, and even spiritually. It is no simple matter.

I've never been one to suffer in silence just for the sake of reputation, nor am I one to go out without a fight.

That's why my passion and very protective side comes out when standing up for those who have the disorder and are ignorantly labelled or told they are musicians who are "simply dealing with bad habits or performance anxiety," when that couldn't be farther from the damn truth! 🔥

It's not so much that I love what I do (it's not like I chose to have focal dystonia), but I love seeing that fire in other's eyes again when they say, "I can overcome this. I'm not giving up. I can pave the pathway one step at a time."

That's all that really matters. Helping others and making a difference even if in the smallest way. I'd rather be helping others stand up after they fall than competing in music politics. I will say I don't miss the competitive arrogance or egos you see in several musicians, even though I miss the act of playing, hearing my own sound, and performing alongside friends and colleagues the most.

I don't like victimizing myself and prefer to view myself as a survivor, but I know what it's like to grieve and the waves will come and go. Therefore, I want others to know there's nothing wrong with that and it's okay to mourn, to express your highs and lows because that is part of the process. <3

Thursday, July 11, 2019

Slow Progress...

#livingwithembouchuredystonia #musiciansdystonia #handdystonia #embouchuredystonia #focaldystonia #taskspecificdystonia

Saturday, July 6, 2019

Britannica: Muscle Disease Pathology

This is one of the best overviews of pathologies of muscle disease, disorders, and weakness. Written by Walter G. Bradley, Richard Humphrey, Tudor Edwards, and Ronald A. Henson. It's well written so that most who are not medical professionals can follow. I hope you read it! The section over muscle nerves and neurons explains a lot about how weakness is not simply a result of overexertion. I really wish all of this was taught to musicians as a part of their education. Not only is it important, but I find it rather fascinating in general.

https://www.britannica.com/science/muscle-disease?fbclid=IwAR0lkrLChFbcz-p7SUp9abuV6DqTwge62PNu6A3gKnWuj9H3Bj65wPgHrgc

Tuesday, June 25, 2019

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.


Thursday, June 20, 2019

Berglof: Latest Embouchure Dystonia Video, May 22nd 2019


(If the video doesn't work here, you can also view it on my facebook page: https://www.facebook.com/watch/?v=346595675996102 ). Originally posted this on my facebook page on May 22nd, 2019!

This is a really good example of what I mean when I tell people that during the onset of my symptoms my Embouchure started to move weirdly, as if I were chewing food or a huge ball of gum while playing. You can definitely see it in the chin muscles as they flex and how the corner muscles collapse involuntarily at times.

My first symptoms where not spasms....that's why I really try to explain to others that it's not just "the shakes". My first symptoms where a tiny air leak, then loss of control of larger movements/intervals, then progressed to loss of ability to decrescendo (embouchure started collapsing only on descending passages and on decrescendo), then after working on low brass playing for a few months and taking time off...then loss of control of smaller movements and spasms started setting in.

Anywhoo! Practiced a little bit today, but you can tell I'm a little frustrated. Overall things are feeling more stable, but now hard to move in certain ways...not due to loss of sensory/touch as much though.

The best analogy I can give is that Embouchure Dystonia usually feels like you are walking on eggshells or a bunch of wires that could zap you with a spasm at any moment, as if you are trying to walk on thin ice....but now I don't feel that way at this stage. Now I'm to a point where it's the opposite; like I'm trying to walk in deep mud and my shoes keep getting stuck.

The smaller muscles movements are more stable, but the larger ones are really being stubborn and not flexing in a natural way....they are slow to catching on. Instead of overshooting due to hyper muscle movement, it's sticky due to overly exaggerated movements/formations....if that makes sense? At least it feels that way. Still a lot of exertion or effort, but in a different way.

Thanks for watching and understanding! Sorry again for poor audio quality (also playing with a straight mute). 😊💕

2019: Upcoming Research Looking for Musician's with Dystonia

1st opportunity...

This is a great opportunity for guitarist with focal hand dystonia to participate in actual retraining research!! More studies on rehabilitation strategies is so important!!! Don't miss this rare opportunity.

Recently I posted/wrote a blog post over Dr. Serap as a highlighted medical professional and professional musician. You can find it on my FB and Living with Embouchure Dystonia page and my blog. 

"Retraining Strategies in the Management of Guitarists’ Dystonia

Johns Hopkins University is conducting a study on guitarists’ dystonia retraining strategies and effectiveness. Researchers from the Peabody Institute and Department of Neurology are looking for guitarists with dystonia that affects their right hands as well as healthy guitarists who play classical and fingerstyle guitar. If you are interested in participating in this study or for more information, you can directly reach Dr. Serap Bastepe-Gray at 443-939-5578 or at sbastep2@jhu.edu."

2nd opportunity...
Research Seeking for Musicians with Focal Dystonia

We are a neuroscience research group from the Massachusetts General Hospital Institute of Health Professions. We are recruiting musicians diagnosed of focal hand dystonia or adductor spasmodic dysphonia (laryngeal dystonia) to understand how dysfunctional brain networks impact involuntary movements. MRI and transcranial magnetic stimulation (TMS) will be used to measure brain activation and networks over two visits. Your contribution will help researchers/clinicians improve understanding of this disease and assist treatment development!

Location: Massachusetts General Hospital - Martinos Center for Biomedical Imaging (visit 1) and Voice Center (visit 2).
Time: 2 visits over two days. 2.5-3 hr for each visit.
Compensation: $200. Travel expense coverage up to $500 based on distance.
Funding source: National Institutes of Health (NIH)

Study contact: Yi-Ling Kuo, ykuo@mghihp.edu


Wednesday, June 19, 2019

DMRF Birthday Fundraiser

I probably should have shared this on my blog and on my facebook "Living with Embouchure Dystonia" page, but didn't have time. I'm happy though that despite my lack of marketing the small fundraiser, I was able to raise $57 dollars for the Dystonia Medical Research Foundation (DMRF). I know it's small, but it counts! I couldn't be happier. Hopefully next year I can help raise more! :) Thank you so much to those who helped out. Here's the original posting:

For my 35th birthday this year (been 10 years since diagnosed with Focal Embouchure Dystonia), I'm asking for donations to the Dystonia Medical Research Foundation. I've chosen this nonprofit because their mission means a lot to me, and I hope you'll consider contributing as a way to celebrate with me. Every little bit will help me reach my goal. I've included information about the Dystonia Medical Research Foundation below.

The mission of the DMRF is to advance research for more effective treatments and ultimately a cure for dystonia, to promote awareness and education and to support the well being of dystonia affected individuals and families.

Although Focal Dystonia affects a small percentage of musicians, there is a larger amount of general Dystonia cases which are more severe and degrade people's lives severely. It truly is a complex and debilitating neurological disorder that comes in many forms.

The DMRF also oversees the Musician's with Dystonia Foundation started by former professional horn player Glen Estrin and neurologist Dr. Steven Frucht.

Thank you for any support! 💜💙💜💙💜💙



Musician's Health Collective Articles



Recently I've been reading a lot of Musician's Health Collective! The author Kayleigh also teaches yoga. I wanted to share a couple of her articles that I really enjoyed recently and can't help but feel strongly about. I agree with a lot of what she says....

"If It Hurts, You're Doing It Wrong" and other Confusing Proclamations

"When We Tell Clients that Their Bodies are Tight, Weak, Strong, or that They're Doing it Wrong"

"Teacher, Am I Doing it Right?" : Searching for Meaning While Teaching

Monday, June 17, 2019

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


Saturday, May 4, 2019

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.

Wednesday, May 1, 2019

Highlighted Professional Musician and Medical Professional

Highlighted professional musician and medical professional: Dr. Bastepe-Gray.

Please check out this article about her, titled, "Musician's Get Hurt A Lot: Paging Dr. Serap Bastepe-Gray" 

I wanted to highlight her since not many might know about her. Currently located in Baltimore. Her husband is also a fellow guitar teacher at Peabody. Please read the article linked on here, it is worth the read. Can't thank her enough for the substantial amount of work she is doing to further the field of music and medicine through John Hopkins. <3

Dr. Bastepe-Gray, a physician and virtuoso guitarist, moved to the United States from Turkey in 1992 to study spinal cord regeneration as a visiting scholar at the Medical College of Pennsylvania.

She graduated from the Peabody Conservatory with a bachelor and masters in Guitar Performance in 1996 and 1999. She holds an M.D. from Hacettepe University in Ankara, Turkey, and an MScOT from Towson University.

She is the Director for Peabody Occupational Health and Injury Prevention Program, serves on the Performing Arts Medicine Committee of the Maryland State Medical Society, the Research and Education Committees of the Performing Arts Medicine Association, and the Musicians’ Health and Wellness Committee of the International Society for Music Education.

She holds joint appointments at the Johns Hopkins Department of Neurology and the Peabody Conservatory.

Her expertise comprises pain and playing related musculoskeletal and neurological upper extremity disorders that affect musical performers.

In collaboration with Dr. Alex Pantelyat of the Neurology Department, she has assembled an interdisciplinary team of 70 experts to form the Johns Hopkins Center for Music and Medicine in order to promote research and help restore and preserve the proficiencies and talents of musicians all over the world.

I Won't Give Up, Even if Frustrated


Tuesday, April 30, 2019

We Are Not Machines...



Also a reminder that as musicians we are not machines either. Don't let anyone make you feel like you should force perfection, or care more about absolute perfection than the overarching goal of making music and creating beautiful music.

It is largely an unconsciously controlled act (especially movement)...so don't interfere or let others interfere with what doesn't need fixed or focused on.

The act of playing is context-dependent and our actions are guided by audiation, and the environment acts as a constraint to guide movement and learning, so that is really where the focus should be....on the blueprint sound/direction in our head...knowing exactly what it is we want to convey (in an overarching picture type of way).

It is really dangerous when interfered with under the wrong situation or person, so trust your intuition and gut feeling if you feel certain things (i.e. way of doing things, way of thinking, to much focus or imbalance on mechanics or technique) or someone (even a highly respected teacher) is only making things worse in the long-run for you.

Saturday, April 27, 2019

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.

Friday, April 26, 2019

10 Years Ago...

Exactly 10 years ago today I played my last recital/solo horn rep. I still love the horn just as much, if not more. I still have all my manuscripts/music library even though I almost threw it all away out of anger and frustration 1 year after the Focal Embouchure Dystonia diagnosis. Just couldn't get rid of it in the end. Meant too much to me.

📯💔📯💔📯💔
#nevergiveup #chinup #staystrong #havefaith
#livingwithembouchuredystonia

Monday, April 22, 2019

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

Wednesday, April 3, 2019

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.

Saturday, March 23, 2019

Pedagogy Master

Attended a wonderful and illuminating lecture, performance, and master class at CU-Boulder last night by Principal Horn of the Houston Symphony/Rice University Professor, William VerMeulen.

He is known as an exceptional pedagogue (if not the best), and has a substantial amount of students that play professionally.

It was enlightening hearing him speak about his unorthodox teaching methods, as it confirmed my feelings about the need for change in traditional teaching practices and how it ties into performance-related injuries.

His teaching is superb and it is such a huge relief to witness. Reminds me a lot of Dr.Tritle actually!! It is refreshing seeing his concepts have resulted in well-rounded, healthy, and highly successful students. This style of teaching and concepts are direly needed in the horn playing world.

If he could just rewrite the horn Bible now, I can die happy!

Thursday, March 7, 2019

The Phoenix Project: Rise from the Ashes by Ashley Gulbranson (French Horn)


This amazing recital in March was hosted by French horn player Ashley Gulbranson at the University of Colorado Boulder. I really wanted to attend it in person because I travel to Boulder for perforamances almost every year, since it's not that far away.

This recital in particular was significant! It features new works created for musicians recovering from Focal Dystonia. The first compositions of this kind to exist!! I did however get to watch the live stream which I posted below.

Though I don't know anyone from the project directly since it's been years since I was a student at CU-Boulder, I can't explain how exciting and heart warming this initiative is. Having this disorder is a difficult, unnerving, and solitary journey at times, even if you know others who can relate.

I know a lot of blood, sweat, and tears probably went into this substantial DMA work. Please have a listen, especially if you are a horn player with embouchure dystonia.

Link to the video recording of the recital:

https://www.facebook.com/ashley.gulbranson/videos/10156558376583705/UzpfSTEwMDAyOTAyNzk0NzM4NDoxODI0Njc0NzYwNjQxODM/