Tuesday, January 29, 2019

Return to Orchestral Playing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, January 26, 2019

Participation in Another Research Study - University of York - England

Yesterday I had the immense pleasure of participating in an interview with Anna Detari as part of her ongoing Ph.D research on Musician's Focal Dystonia. It was an honor to finally meet her. Once again, I am ecstatic to participate in any research being conducted and so glad she contacted me.

It is a blessing meeting someone who shares the same passion for helping others. It was relieving sharing my history of playing. We both developed embouchure dystonia around the same time. It's actually been years since I fully discussed my past with anyone...meaning all the possible details before onset, during, and after, so it was quite relieving looking into the past.

Thank you Anna for your passion, experience, and efforts put forth in conducting further research on the disorder at the University of York in England! You are doing amazing work.

I've posted Anna's website on the side bar under the Musician's With Dystonia section, so please check that out and contact her if you have musician's dystonia and would be interested in participating in any future or current research. You can also read more about her if you click on her name above.

Friday, January 18, 2019

Quick Video Post: Testing my Symptoms Across Registers

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

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

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

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

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

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

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

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

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

Participation in a Research Study on Embouchure Dystonia - University of Washington - St. Louis

I don't know why I forgot to post this ages ago! I was flown out to St. Louis on January 3rd, 2018 to participate in a research study on embouchure dystonia conducted at the University of Washington St. Louis, by Aimee Morris and neurologist Dr. Joel Perlmutter.

The Dystonia Coalition team also happened to be there conducting research, so they took blood samples and videos of my playing to archive!

While in St. Louis, I was happy to visit my friend/mentor/horn player Thomas Jostlein who is the associate Principal Horn of the St. Louis Symphony, and speak with another horn player about the subject of embouchure dystonia.

Even though it wasn't a vacation, I really enjoyed the time away from Denver. I really needed the trip away. The photo above is a view from the hotel room. I spent most of the night sitting next to the window, eating an awesome dinner, looking out at the scene of the arch with all the city lights. I listened a podcast interviewing Marty Hackleman who discusses near the end of the interview his recent diagnosis of embouchure dystonia. I also started reading a hefty pile of  books (photo below) I checked out from the library before I left Denver.

I can't tell you how relieving it was to talk to Dr. Perlmutter and ask him all kinds of questions I had, such as why Deep Brain Stimulation (DBS) surgery isn't allowed on musician's with embouchure dystonia in particular in the United States, when it is quickly gaining a reputation for curing musician's with hand dystonia...or even the use of Transcranial Direct Current Stimulation (TMS). Forgive me for not explaining the jargon well or things more thoroughly, as it is sometimes all greek to me as well. He was explaining to me how the brain registers musician's dystonia in both hemispheres and why it is not as easy to target the exact location during surgery as it is when conducting surgery for Essential Tremors which can be pinpointed. It's another reason why the experimental surgery on musicians is not approved in the United States. Most of the research using DBS and/or TMS is being conducted on more life-threatening forms of neurological disorders.

It was relieving to also work with Aimee Morris as she is also a french horn player who has experienced a physical setback in the past; Bell's Palsy. She is passionate about her research, and did a fantastic job of organizing everything from booking my flight, hotel, transportation, itinerary, and meals. Dr. Perlmutter performed neurological tests, and Aimee did the fMRI imaging on my brain, and conducted the playing tests/recordings, and the questionnaire.

Here is an image of my brain I was able to take home with me. Sorry for the blurriness, as I took a picture of it from my phone. It's not often you get to see images of your own brain up close.

It was a whirlwind day of tests, blood samples, questions, playing, recording, trying to not fall asleep in the fMRI machine for an hour, and video taping, that I can't remember all the details, nor do I understand exactly how all of this was measured even though the research article explains it below.

I just know I was ecstatic to be contributing to the research as a patient, and so proud and happy to see more neurologists within the United States becoming interested in contributing to the research being done on not only musician's dystonia, but in particular embouchure dystonia, which we don't have as much research on as hand dystonia.

Thomas was also interested in contributing, so he participated as a non-dystonic horn player to the study later on. Which moved me and made me really happy hearing he did that!

Anyways! Here is the link to the research publication on NCBI. You will need a subscription to read it. I wish I could give a huge thank you to Aimee, Dr. Perlmutter and the rest of the research team. I know I'm not the only musician involved, but it meant a lot to finally participate. It makes me feel like I did something important to help further the efforts and information on the disorder somehow.

Quantitative, Clinically Relevant Acoustic Measurements of Focal Embouchure Dystonia - Morris, A.E; Norris, S.A.; Perlmutter, J.S.; Mink, JW

Although the photos below are unrelated, I wanted to add them here, since...why not!....there's already a photo of my brain above. Why not throw in a couple x-ray shots of my face since we're getting up close and personal. These are from my neuro-dentistry exams conducted in late 2014. Again, not the greatest quality because I took them on my phone.

Sunday, January 6, 2019

Dental Hygiene

When your dental hygiene care is almost obsessive. A water flosser, dental kit, electric toothbrush, and tongue forcep. The only two things missing in the photo is castor oil for oil-pulling, and a mouth guard.

I was never this attentive when younger as I thought I was doing enough already because I rarely had any dental issues in my life.

After I was diagnosed with Embouchure Dystonia I started to care a lot more about everything concerning my face, mouth, upper body, and health in general just out of pure frustration....not that it would change anything regarding my dystonia.

I started going the extra mile. I figured it could only help me in the long-run with overall health, and prevent any other possible future issues.

After studying all the things that could damage your teeth, glands, mouth, and jaw....no wonder I am a bit paranoid. Haha! :-)