Focal Dystonia Panel at the New York Flute Fair

Focal Dystonia Panel at the New York Flute Fair!!!! I love it! So wonderful seeing what I believe is the first panel discussion on this disorder at a music/instrumental event ever.

NY Flute Fair: Focal Hand Dystonia and the Working Musician - Panel discussion with Stephanie Mortimore, Dr. Steven Frucht, Eric Phinney, and Abhik Mukherjee. Moderated by Caity Massoud.

Thank you Stephanie Mortimore, Dr. Frucht, Eric Phinney, and Abhik Mukherjee, for making such a huge stride in the area of Focal Hand Dystonia awareness and open communication with the public. This has to be the first panel of musicians with dystonia joining together at a conference to share their insight and experience. What progress!!!

TED Talk: Dr. Daniel Amen

"Behavior is the expression of the problem. Not the problem." - Dr. Daniel Amen

Dr. Keller: Large Study Finds Predictors of Musician's Dystonia

I saw my friend Richard Ware share this insightful article, so wanted to pass it on....hit "continue reading" in order to see full article.

Large Study Finds Predictors of Musician's Dystonia
Daniel M. Keller, PhD

October 09, 2019

NICE, France — A new review suggests musician's focal task-specific dystonia (MFD) often occurs subsequent to a triggering factor, such as a change in technique or increase in practice, and that many patients have concurrent ipsilateral neuropathy, particularly ulnar neuropathy, suggesting it may be an important risk factor, researchers report.

MFD affects 1% to 2% of professional musicians, is an important occupational disability, and can be career-ending. The most common form is musician focal hand dystonia (MFHD), with onset in adulthood at the peak of performance careers.

Less common is embouchure dystonia, which affects woodwind and brass players. Typical treatment with botulinum toxin injections and retraining are most often unsatisfactory.

A review of 2649 case records of performing musicians from health clinics treating performing artists at the University of California San Francisco (1984-1989) and Partners HealthCare in Boston (1989-2015) identified 240 consecutive cases (9.1%) of MFD. Cases were compared with a cohort of 532 nondystonic patients with ulnar nerve entrapment.

Speaking during a group poster tour here at the 2019 International Congress of Parkinson's Disease and Movement Disorders, Christopher Stephen, MB ChB, Massachusetts General Hospital and Brigham and Women's Hospital Performing Arts Clinic, Boston, Massachusetts, reported that "ulnar nerve entrapment had increased prevalence in focal hand dystonia — 30% as opposed to 22% in our whole musician's cohort of 2649 musicians."

In addition, of the 66 patients with MFHD and ulnar nerve entrapment, all but one were ipsilateral. "It's quite a striking finding," he said.

Predictors of MFHD versus ulnar nerve entrapment included male gender and playing professionally (both P < .0001). Predictors of worse outcome included the number of fingers involved with dystonia (P = .0009) and being an amateur musician (P = .0138).

Ten percent of the dystonic cohort had a family history of movement disorders, whereas this was very rare in patients with ulnar nerve entrapment only.

The MFD population was about 70% male, consisted mostly of professional musicians but also 30% amateurs and about 8% conservatory students. The age of onset was about 36 years but with a wide range of 10 to 67 years. About 72% performed classical music, 16% jazz, and 12% other genres.

A side predilection depended on the kind of instrument, for example, piano or plucked strings. MFHD was rare in brass and percussion players.

Of the 215 cases with MFHD, 160 (74.4%) had a pure flexion dystonia, most of them with flexion of the ring and little fingers. Extension-only dystonia occurred in 25 patients, and most of them played woodwinds.

The majority (72.2%) of MFHD patients had reported an associated event prior to developing the condition, whether musical (eg, increased practice, new technique, or a new instrument) or nonmusical (eg, concurrent neuropathy, overuse injury, or emotional stress or trauma).

Fifty-two patients (24.2%) received botulinum toxin injections, with 30% of them having substantial improvement, but most discontinued this therapy due to lack of benefit. Oral medications were minimally effective in treating dystonia in MFHD but sometimes helped treat tremor.

Of the 66 patients that had ipsilateral ulnar nerve entrapment and MFHD, 27 underwent surgery for the entrapment. Most had substantial improvement in symptoms and signs of ulnar nerve entrapment, and a minority had improvement in dystonia.

"So it could suggest that having surgery, if you do find an ipsilateral ulnar nerve entrapment with dystonia...may help some patients have a substantial improvement after surgery, but not in general," Stephen said.

He noted that changing to a different instrument helped some patients, but even then over time dystonia developed with that instrument as well. Just over half of MFHD patients continued to play but were impaired.

After Stephen's presentation, a lively discussion ensued between him and Alberto Albanese, MD, Catholic University, Milan, Italy, one of the leaders of the poster tour. Albanese raised the possibility of better training in technique to avoid dystonia.

"I was thinking that probably appropriate training to some extent prevents future dystonia because I follow the director of the conservatory in Milan, and I discussed with him many times about how to train musicians from the very beginning to try to prevent dystonia," he said.

Although an interesting idea, Stephen said the study involved people who already had dystonia and explored what were predictors of worse outcome. But he agreed that better training may help avoid dystonia. "It may also give them the expertise to be able to still play to a decent level and adjust the repertoire," he said.

"Well, it depends on the severity because they try as much as they can because they love music. So for them to stop is really a problem," Albanese concluded.

There was no funding for the study. Stephen has reported no relevant financial relationships. Albanese has received speaker's honoraria from Allergan, Ipsen, Merz, Medtronic, and Zambon.

International Congress of Parkinson's Disease and Movement Disorders 2019. Presented September 24, 2019. Abstract 1345.

The Backwards Brain Bicycle: What Having Musician's Focal Dystonia is Like

This is what it's like having Musicians Focal Dystonia. Except after 20+ years of daily practice, performing, and refining your skills to a high degree, you can see why it's significantly worse when the brain pathways get even slightly crossed; sensory/touch goes haywire and motor control goes out the window.

All those years of learning become our enemy and everything must be deprogrammed and reprogrammed and even though you can adapt and modify, it's never quite the same or as smooth as the old pathway that was dug.

The hardest part is letting go/stopping your brain from yelling at your body, "You're going to fall!! I must do something!!" and thus it keeps trying to resort to your default control/old pathway that no longer works. It takes tremendous work to build a new pathway, a ton of failing and relapses, and for some it seems impossible or takes years because your body and brain lack enough plasticity to overcome the damaged circuit. Also everyone is affected to various degrees and it's hard to gauge severity levels.

We really don't know how deep the rabbit hole is, so that's why I'm against those who make the notion that they have the one and only cure, or a one-size-fits-all formula to overcoming the disorder. One way of doing things won't work for everyone, and not everyone can overcome it so easily or within the same time frame. Rehabilitating is an individualized process. And a true cure means it can be scientifically tested over and over again with a proven 100% success rate in each and every individual.

Auff! Frustrating to say the least. This comes very close to a great example of what it's like having this disorder. I know there are a lot worse things in life, but when it is your livelyhood and a part of who you are, it's catastrophic losing your ability to play. 💕

Dr. Perlmutter Named Scientific Director of DMRF

I just had to come back on here to say Congratulations Dr. Perlmutter! A great neurologist and very kind, humble, and intellectual professional.

I am honored to have participated in his research on embouchure dystonia a few years ago and speak with him in detail about ongoing studies and brain surgery.

He helped refer me to one of his former research partners/neurologists here in Denver. Also documented/recorded my neurological examination and blood work for the Dystonia Coalition while there.

Definitely deserves this esteemed position as scientific director of the DMRF. Coincidentally every June on my birthday I've been asking for donations to DMRF research.

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.

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

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.

New Facebook Group and Forum for Musicians with Dystonia

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

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

April: Important Embouchure Dystonia Research Articles, Information, and Videos

MRI Horn and Brass Repository Project (MBRP)
Dr. Peter Iltis is currently directing this research project in collaboration with the Max Planck Institute for Biophysical Chemistry (Gottingen, Germany) and the Institute for Music Physiology and Musician's Medicine (Hannover, Germany). The goal of the project is to research and find ways to restore function in musician's with Embouchure Dystonia, and also find ways to prevent FTSED in general. If you are interested in more information, please click on the link and scroll to the bottom of the page for Dr. Iltis information. Also if you would like to donate to this important research, there is a link on his webpage as well. Currently the International Horn Society executive committee encourages fellow musicians and horn players to support this research if can!

Here is a video of Dr. Iltis speaking in a new video posted on facebook about the research project. And here are further informative videos over his current research below:

American Academy of Neurology Podcast: Sensorimotor Overactivity as a Pathophysiological Trait of Embouchure Dystonia
An interview with Dr. Bernhard Haslinger about his paper published on sensorimotor overactivity in embouchure dystonia.

Activity and Topographic changes in the Somatosensory System in Embouchure Dystonia
I believe I've posted this before! But here is a more condensed overview of this research publication by Tobias Mantel MD, Christian Dresel MD, Eckart Altenmuller MD, Claus Zimmer MD, Jonas Noe MD, Bernhard Haslinger MD ( <-- Who was speaking in the previous podcast link above).

Allegro: Foundation is Created to Assist Musicians with Dystonia
This is an article from the year 2000 when Glen Estrin and Dr. Frucht founded the Musician's With Dystonia Foundation. It has Dr. Frucht's contact information, and talks about how they assist musicians with information on how to get health care coverage, and where to go when they need a diagnosis. "Dr. Steven Frucht of the Columbia Presbyterian Medical Center Movement Disorders Clinic may be reached at (212) 305-5277...for further information regarding Musicians with Dystonia Foundation, send e-mails to musiciandystonia@aol.com."

Clinical and Epidemiological Correlates of Task-Specific Dystonia in a Large Cohort of Brazilian Musicians
This is a general study on focal task-specific dystonia in musicians around Brazil. The study was conducted by Rita C. Moura, Patrcia Maria de Carvalho Aguiar, Graziela Bortz, and Henrique Ballalai Ferraz. 49 individuals were diagnosed with FD (mean age 26.4 years; 92% male). The instruments most associated with FD were acoustic guitar (36.7%) and brass instruments (30.6%). They concluded that Brazilian FD music players were mainly male, classical music professionals, around 30 years of age, with arms, hands, or oromandibular muscles affected. They end their study by stating that Musicians Focal Dystonia should receive more attention from musicians, teachers, and health professionals.

Worlds First Focal Hand Dystonia Patient in Japan Treated with Focused Ultra-Sound (FUS) Enabling Musician to Play Again
I was quite interested in this and contacted Nadia Scantlebury at SunnyBrook about a current focused ultra-sound study that was going on in Canada. Unfortunately they are only letting Canadian citizens participate. However, she did mention that there is a focused ultra-sound research study or trial going on at University of Virginia. Here is a list of all their current trials going on with focused ultra-sound! If interested, you can contact them directly.

From Embouchure Problems to Embouchure Dystonia? A Survey of Self-reported Embouchure Disorders in 585 Professional Orchestra Brass Players
This research was conducted by Anke Steinmetz, Andreas Stang, Malte Kornhuber, Marc Rollinghoff, Karl-Stefan Delank, and Eckart Altenmuller. "The final publication is available at link.springer.com.

Music and Medicine: A Research Model
These are slide presentations by professor Karendra Devroop of the School of Music and Conservatory at North-West University that cover a variety of music performance-related injuries, disorders, research, knowledge, and statistics. I highly recommend reading it, as it covers a wide variety of very important information we can all benefit from as musicians. Raise awareness!

Review: Music, Motor Control, and the Brain. By Eckart Altenmuller, Mario Wiesendanger, and Jurg Kesselring. 
You have to have a Jstor account in order to read this! Easy to sign up, and easy to access this article, as it is a free read. I highly recommend a Jstor account anyways!...so many articles and quality information.

Carmine Caruso Method Adapted and Taught by Julie Landsman
Last, but definitely not least!!! These are some of my favorite videos to watch. I actually started using the freebuzzing/mouthpiece buzzing exercise video in rehabilitation, as it helps me a ton!!!

The Recovery

Freebuzzing and Mouthpiece Buzzing

The Six Notes

The Harmonic Series

Carmine Caruso Method: Introduction with Julie Landsman

Note Tasting

Noodles

Spider

Intervals

Dynamic Studies

Low Register

Snakes

October: Monthly Shared Articles

First article is titled: "What DOES it take to be a Professional Orchestra Musician?" 
This blog post also points out something that is a significantly huge part of preparing for focal dystonia rehabilitation! Changing your mindset from a performance technique mindset to an exploratory mindset full of love, creativity, and adaptability. 

Everything taught to you haas to go out the window. Foget it all (i.e. all knowledge and practice of technique, embouchure formation, setup, proper breathing...). Literally have to deprogram everything so you can start over and start physical rehabilitation from a healthy mental place. Not easy because musicians instruments and reputation are woven tightly into their identity.

What a great article! If you're like others who lean more towards this side, do whatever it takes to regain even a little ownership of your own voice/sound and expression in music. This is why guitar has always been my secondary instrument. It allowed me to feel creative and free of many limitations at times, or when demands got tough. 

Second article is titled: "Focal Dystonia of the Hand and What the Brain has to Do with It"

A glimpse at part of the article:

 "We get similar effects in blind people who read Braille with several fingers at once: they develop a single representation of all these fingers on the somatosensory cortex, but are not able to determine which part of the information received in the brain comes from which finger. Psychologist Thomas Elbert further points out a parallel of this in all of us: our toes are generally stimulated only simultaneously as we walk, and most of us have trouble telling which of the middle toes has been touched upon application of a light pressure stimulus. Indeed, our toes are not individually represented on the somatosensory cortex as our fingers are."

"Dr Merzenich of the University of California San Francisco calls focal dystonia of the hand a “learning-based catastrophe” and a “failure of the brain’s learning processes”. Consequently, he focuses on developing techniques that will help to “re-normalize the learning system”, in helping to newly distinguish the areas on the somatosensory cortex that have become blurred. Although this approach is very new, Merzenich claims some good results in training children with linguistic impairments, such as dyslexia, which show similar blurring of representations in the brain."

Month of March Research Articles

Apologies for not imputing much into my blog this year! My first year teaching has been one of the most challenging, yet rewarding blessing in my life. I'm finally doing what I love, but do feel a bit sad over not having enough time to tend to my blog. This blog means so much to me! I'm writing to you from the desk in the photo...I finally have a place to work at home. Until summer rolls around, I'll be posting mainly resources/research articles.

Here are two research articles I've read recently. I'm been searching a great deal to find information over tests focused around the somatosensory part of the brain in musicians with dystonia. Last month I posted an article that explains what acetylcholine is and how it supports the CNS/PNS systems (and the somatosensory cortical neurons).

The first article below is pretty self explanatory; how we should focus on somatosensory, as it may be another key component in research on musician's dystonia, and what these researchers have found. The second one involves some EMG electrode work in stimulating muscles of musicians who have dystonia and how this has helped restore sensorimotor organization.

That is all for now! I will post more if and when I can. Thank you to those who have reached out...I promise to be in touch as soon as possible.

Focal Dystonia in Musicians: Linking Motor Symptoms to Somatosensory Dysfunction

Regaining Motor Control in Musician's Dystonia by Restoring Sensorimotor Organization

Neurotransmitter: Acetylcholine

I wanted to share this link over Acetylcholine. It plays a huge part in the process of creating smooth muscle movement, convulsion (too many contractions), or the lack thereof too (muscle weakness), as well as it factors into many other important parts of the body and plays a role in both the CNS and PNS (Central, and Peripheral nervous systems).