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