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Focal Embouchure Dystonia: Devices, Equipment, and a Few Daily Musts for me in 2020!

I've been meaning to write this blog post for a while! I'm writing this in a hurry, so will come back and edit when can...

• Since 2011, I have been playing on my gold plated Farkas DC, which I've stated before and mentioned how it provides a decent amount of back-pressure which is kind of like a crutch that helps hold me up. Yet, it has such a beautiful tone. It cuts into my endurance though, but it allows me to manage my dystonia symptoms more easily, so I'm willing to take that compromise. It's not a free-blowing mouthpiece that cuts through an orchestra like the typical mouthpieces I use to play on pre-dystonia. Before, I played solely on Moosewood Mouthpieces (i.e. B12, B16, and RBS16 Vienna Cup, and Megamoose; with a Lawson rim). 
  
  My current mouthpiece:
  
  
  
  An example of the Megamoose for comparison (I don't own one anymore, but very happy I returned to my original mp): 
  
  
  
  
• The Tens Unit I use(d) is the model 7000, 2nd edition:
  https://tensunits.com/products/tens-unit-7000-tu7000-original-tens-professional-unit-fda-approved 
  
  To find out more about what tens units are used for you can read this article here: https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/ 
  
  I used a TENS Unit in the past to help with my jaw pain and upper back tension, including fascial soreness which came about in 2013 and I resolved in 2015/16. It also helped relieve tension after intense dystonic relapses.
  
  Later on after myofascial release therapy helped get rid of my jaw pain and tissue build-up. I started using castor oil which was more effective than ice packing, heat packing, massage, and TENS unit combined! You can read more about my myofascial release therapy and stretches in a video on the left hand sidebar on my blog under "highlights". 
  
  I still do myofascial release once a week by myself if playing a lot. I no longer require TENS Unit, but definitely relied on it direly back then. 

• Castor Oil Pulling: This is a must for me after every rehearsal, concert, or practice session. I gently swish 2-3 tablespoons of castor oil in my mouth for 30 minutes, spit it in the garbage, rinse mouth with water, brush teeth, (then myofascial release afterwards - once a week only). If didn't play very long, I don't have to do this at all, but if an hour long intense playing session or I feel any tension in my face whatsoever, I will do a pull.
  
  Most people think of castor oil as a hair product or laxative, but it's actually one of those age-old remedies and a powerful anti-inflammatory that is effective when having TMJ problems, muscle pain, soreness, tooth pain, or any type of joint or muscle swelling anywhere in general. It has several benefits.
  
  I originally started using it to help keep my teeth clean, since oil-pulling is suppose to be better than mouthwash these days (I accidentally purchased it, instead of coconut oil, which is what most use for mouth cleanser), but found it was helping the tension in my face. I looked more information on it and read stories about how people found it helped them with severe jaw pain, mouth problems, salivary gland problems, and muscle problems. I use it all the time. Cannot live without it and so glad I came across it by accident.
  
  You can google more information on castor oil benefits.  Here is a photo of what I use. It has to be cold pressed and hexane-free. This is where I get it on amazon: https://www.amazon.com/GreenIVe-Castor-Pressed-Hexane-Exclusively/dp/B07QYC559Q/ref=sr_1_23?dchild=1&keywords=castor+oil&qid=1593744595&sr=8-23

• Power Lung: http://www.powerlung.com/region/us/models-accessories/powerlung-models/trainer/ 
  
  I use this for breathing exercises. However, I do have to mention that the first year I had it, I had troubles using it because my embouchure dystonia was so bad that it kicked in when I tried to put my lips over the mouthpiece. So I actually found that it was easier to put my lips "against" the mouthpiece and blowing air through it that way.  So that's how I managed using it for the first year. No regrets, because eventually I was able to use it the way intended.
  
  What I love about this device is it has resistance settings for BOTH the inhale and exhale. You can just naturally blow air against various resistance settings and what you are comfortable with. If I don't have it on hand, I just use my mouthpiece and cover the end of the shank with my pinky by various degrees, but the smallness of my mouthpiece usually triggered my dystonia back then too. Now I can use my power lung and my mouthpiece with no symptoms. This device resistance settings also helped me with regaining control of my corner breathing, which was very difficult in the beginning.

• P.E.T.E. Embouchure Trainer: I make sure to use this separately away from practice time and rehearsals just because it definitely can be easily overused and the muscles need time to reset after using it. So don't play right away after using it. I usually wait a few hours before playing, and I only use the device for about 5 minutes of work and sparingly.
  
  What I like about it, is again, you're practicing resistance training; using your muscles to grab/grasp the disc and hold on. Even better is that instead of dealing with resistance such as back-pressure from a mouthpiece or instrument, we’re dealing with resistance from the opposite side of the lips (inside the lips) with an object. With dystonia we don't get a lot of ways to practice keeping our strength up because we can't play. So this is one of the various ways I do that; including free-buzzing and mouthpiece buzzing. But these forms of strength training definitely are NOT a replacement for working on ones actual playing, so use it sparingly and only when you feel it really is helping. I like to use it to change things up...as with dystonia, change in sensation and ways of doing things is sometimes a very good thing. I also use it to help with stretches too. And in the beginning stages of recovery I use mouthpiece buzzing and free buzzing in a completely different way than intended and definitely not as a strengthening tool...been meaning to write a post over this too.

• Guitar Foot Rest: I know this sounds weird. But for a while I found this helpful. For a long time I had to play with the bell on my leg, but my horn would always be at a weird angle. By using an adjustable guitar foot rest under my right foot, it helped me get the correct position for the angle of my lead pipe. I could not play with my bell off my leg for years. My dystonia symptoms were way too overpowering in the beginning and playing off the leg was too unstable. I don't require the foot rest anymore, but I do still practice with it at home sometimes because I really like it.

• DAILY MUST: STRETCHES. As usual. Always, always, always!!! Upper back, shoulder, neck, jaw, tongue, face - both inside and out!
  
  I also want to mention something here I haven't posted in previous blog posts or videos, but will soon. Focal dystonia tends to affect our bodies either from upper body vs lower body, or left side vs right side. For me, the left side of my face has less sensory and control than the right side. The right side of my embouchure tends to do a lot of compensating.
  
  It is not easy to find which muscle groups in the face lack more or less control; but one way you can find it, is by practicing very slow natural movements (away from the horn).
  
  For example: Try to raise/arch your right eyebrow very slowly while looking in a mirror. Observe if it feels like it does it independently. Now try to do the same with the left eyebrow and see if it can move on its own as well. What I found is there where certain muscles that I had in my face (depending on the movement) that lacked less control or independent movement. I simply found this by practicing various facial expressions and movements. Try it and see if it is the same from side to side or any areas where things flare up more.
  
  You can do the same with the neck. What is your range of motion? Try sitting with good posture with your back against a wall. Tilt your right ear to your shoulder while looking in a mirror. Observe how far your neck bends and if with ease towards your shoulder. Now try the left side. Is it the same or different? Is there a huge noticeable area of restriction?
  
  Testing basic movement and by practicing stretches GIVES US a layout or map of our areas of lack of function, our restrictions, and our range of motion. This is another area that journaling comes in handy. 
  
  JOURNAL! Journal! Journal! Be scientific! - like Jonathan Vieker says. Observe and record all habits even if it's basic stuff like the food you eat; especially in the beginning stages of recovery or during onset of a possible injury or dystonia. 

• Lumbar Back support: Whenever you can, start implementing back support and relief now! Back pain is mankind’s #1 Achilles heel, and it’s very common to have it with all dystonia types. I use this back support device which comes with a pamphlet of stretching exercises, and two types of back/tissue massage balls (which can also come in handy for myofascial release around the chest and neck area). I also (not posted here) have a back strap device/splint that helps keep my back straight when sitting at a desk and fits under my shirt.

• Neck Traction Device: This helps with my neck tension from my dystonia. It's done SO MUCH for me. I have to use it, including my stretches. For those with mild to light cervical dystonia, you might find this handy. What it does is lifts the upper spine and skull so that the muscles, nerves, and spine in the neck have a chance to stretch out and reset. Gravity over time compresses your spine, especially in the neck area, and for those with neck problems, finding ways to relieve compression is vital.
  
  If I had space and could afford a Back Inversion Table I would get one! You can find one here if interested. This would be great for those with cervical dystonia: https://www.amazon.com/Innova-ITX9700-Inversion-Memory-Lumbar/dp/B00F950N3K/ref=sr_1_24?dchild=1&keywords=back+inversion+table&qid=1593833741&sr=8-24

• DAILY MUST: YOGA. A mat is inexpensive and very portable to take to work or anywhere! That's all I'm going to say here. Some form of movement exercise that helps the upper body; avoid tension-forming exercises like weight lifting, go for more graceful movement such as tai chi, Alexander Technique sessions also help in addition. Also will mention here, additionally, stepping away from a screen or cubicle and going hiking and getting out in nature helps my overall well-being too so much!
  
  
  
  
  
• DAILY MUST: MEDITATION OR MANTRAS. Something to center your focus and mind before you start diving into rehabilitation work. This goes double for those who are just starting their journey. There are several wonderful guided meditation videos on YouTube. Other forms of focus are "Tapping Meditation" or visualizations of relieving tension from areas of the body. It can simply be whatever you find calms and centers yourself; anything ranging from aromatherapy, to sipping tea and listening to music before you start, and just getting yourself into the right mental place of "mindful observation” so that you are tuning into your body with a calm nervous system and not reacting emotionally or critically to the dystonia and instead going with the flow.
  
  Not to get off topic, but it’s important to make time in the day or week to take care of yourself inwardly. The best advice given to me ever was: "Go to work for yourself before you go to work for anyone else!" Put your needs first daily and get into the routine.
  
  So first thing in the morning, do what YOU need; whether that's prayers, meditation, exercises, relaxing, cooking, or quiet time. Don't pick up the phone and don't check your to-do list. I make it a rule of thumb to not check my phone until I step foot in my office at work. I also turn off all push, SMS, and e-mail notifications for Facebook and social apps. They can wait! And I can always manually check it. Don’t need notifications.
  
  I also make it a rule to not reply to any emails after a certain time of the day. And a rule to turn my phone completely off when in the company of others if possible (unless an emergency or awaiting a very important call). If you have things you need to do in a timely manner that day, then set timers and reminders in a calendar or watch or prepare for it the day prior; but do whatever it takes to avoid going into "Sigh! What do I have to do today?" mentality or stressing about all that needs to be done as soon as you wake up.
  
  Learn to put aside that time in the morning to live for yourself. Time management is key and make yourself solitude/alone time a priority. It is your birthright to participate in happiness and take care of yourself first and foremost. 

 

• DAILY MUST: DRINK WATER. Believe it or not, a full 2 bottles before and after ever practice session. It really helps, and LOTS of it! Calming your nervous system helps you tune into your body, but also keeping your body in a state of wellbeing and running on its primary form of energy and cleanser is necessary too. Just like an athlete, or a person doing a intense workout session, or someone doing heavy work, or even going into surgery...we are ALWAYS required and asked to drink lots of water before hand or given liquids as a pre-requisite.
  
  Another quick daily must which I've written about before is upping my dental/oral health; which my water flosser, castor oil, electric toothbrush, and dental kit really help with. I especially love using the tongue scrapper as disgusting as it seems. Where has it been my whole life?!?!
  
  
  

Topiramate: is an anticonvulsant medication and it works by decreasing abnormal excitement in the brain. Usually this is used for seizures.



Oddly enough, I am taking this currently and just started it last week for weight loss. I was SHOCKED to find it carried over and improved my focal embouchure dystonia drastically!!! I'm actually very excited and hoping I can talk to my doctor about keeping me on it long-term if it helps me with my dystonia. I take a very small dosage of it. The only downside of it, is it makes me feel a little tingle all over...so when I practice, the sensation kind of freaks me out, as usually that warrants not a good sign. But she said it's normal. I use to take Tremor Miracle for a year and that helped me also, but too expensive. It is a dietary supplement for essential tremors that you can buy on Amazon.

• Halo Neuro Sport 2: https://www.haloneuro.com/products/halo-sport-2 

This is actually a device I purchased back in January, but wasn’t able to use it until now because my phone was a piece of junk until I upgraded to my first iPhone ever. Woohoo! About time Katie.

This nifty device is actually a Transcranial Electric Current Stimulator! Usually you see neurologist use these in research studies in the form of a electrode cap placed onto someone’s head after covered in substance. Except, this was designed into a portable headset in order to improve motor skill learning of athletes and it is placed directly over the center of the scalp. The electrodes come in the form of a foam band that soaks in water and magnetically attaches to the inner lining of the headphones. The headset connects via bluetooth to an app on your phone which then takes you through stages of priming and electric currents.

It’s quite expensive, but I found it actually helps me a lot too!!! I am way more in control of my playing the day after using it, than days not using it. However, of course being a electric current stimulator, I have yet to build up my endurance in order to use it on a consistent basis since it is quite intense - it really works you out in a way I can’t describe, and it wasn’t designed for brass players in mind, but more for string players as it says. I am hopeful, even though will admit the priming is a bit uncomfortable. Currently I’m slowly and carefully testing it out. But so far, so good!

Okay that is all I have for now! I'm sure I'm forgetting something, but will come back and add more if I remember! I hope this helps and that some of this is insightful, if not interesting! If anyone has any questions, feel free to comment, e-mail, or reach out! - Katie Berglof

A Short Guide to Key Transposition on French Horn by Katie A. Berglof

Facebook Page: A Short Guide to Horn Transposition 
PDF Download Available at: https://www.focalembouchuredystonia.com/horn-transposition-guide

Musicians Injury Talk with Trumpeter Jonathan Vieker on Muscle Tears and Surgery

Musicians Dystonia Talk with Violinist Jonathan Mui on Focal Hand Dystonia

Upcoming Live Talks: Trumpeter Jonathan Vieker, and Violinist Jonathan Mui

Musicians Dystonia LIVE Talk with Saxophonist Clare Church

Upcoming Musicians Dystonia Live Talk: Saxophonist Clare Church

Musicians Dystonia LIVE Talk with Pianist Akiko Trush

Upcoming Musicians Dystonia Live Talk with Pianist Akiko Trush

Musicians Dystonia LIVE Talk with flautist Andrea Brachfeld

Upcoming Musicians Dystonia Live Talk: Flautist Andrea Brachfeld

Musicians Dystonia LIVE Talk with Guitarist David Leisner

Upcoming Musicians Dystonia Talk: Guitarist David Leisner

Musicians Dystonia LIVE Talk with Tuba Player Warren Deck

Upcoming Musicians Dystonia Live Talk

Musicians Dystonia Live Talk with World Renown Horn Player Martin Hackleman

Upcoming Musicians Dystonia Live Talk

Musicians Dystonia Live Talk with Highly Acclaimed Oboist Alex Klein

Upcoming Musicians Dystonia Live Talk

Myofascial Release and Focal Embouchure Dystonia

Answering a question asked during a live-stream about how to do the myofascial release stretches/tissue work:

Part 1

Part 2

Part 3

Musicians Dystonia Live Talks Playlist/Subscription

Hey everyone! For anyone interested in following my playlist of Musician Dystonia Talks, I'm uploading them to YouTube as I go along. Here is the link:
https://www.youtube.com/playlist?list=PLtai-UA2gGZPjfl-73KT_PGn9xIR2ArNB

Musicians Dystonia Live-Talk: Guest Horn Player Kathryn Pewenofkit Briner

Musicians Dystonia Live-Talk: Guest Stephanie Mortimore - Principal Piccolo of the MET Opera Orchestra

Musicians Dystonia Live-Talk: Guest Trumpeter Jamie Langridge

Musicians Dystonia Live-Talk: Guest Saxophonist Frank Bozak

Musicians Dystonia Live-Stream Talk: Guest tubist Adam Stevens

Musicians Dystonia Live Talk with Adam Stevens (Tuba) on Focal Embouchure Dystonia!

#focaldystonia #embouchuredystonia #handdystonia #dystoniaawareness #musiciansdystonia 

Musicians Dystonia Live-Stream Talk: Guest Percussionist Callaghn Soligram

Musicians Dystonia Live Talk with drummer Callaghn Soligram! Apologies for my computer crashing half-ways through. Thank you Callaghn for a great interview and for sharing your journey!! <3

#focaldystonia #embouchuredystonia #handdystonia #dystoniaawareness #musiciansdystonia

Brother-in-law Celebrates on Trumpet!

My brother-in-law Mario Pesacreta celebrating easter with his trumpet today! 🎺🎵🐰🐣

(Update: We just realized it isn't easter today!!! So funny! Still sounds great and was a good day!!! 😄)

Subtypes of Motor Impairments in Musicians by Katherine Butler

Subtypes of Motor Impairments in Musicians by Katherine Butler

Call for Interviews on Focal Dystonia

Time to Skype!

New Photos from Sweet Dahlia Photography

Very sweet of my sister Alison Pesacreta to print the photos she took of me. She runs her own photography business with her husband, it's called Sweet Dahlia Photography. I love them!! Attempting a collage...♥️

New Headshots

Proposal Accepted for IHS 52

I received my proposal acceptance letter yesterday. The lecture "Focal Embouchure Dystonia Rehabilitations: Retraining Strategies" will be on Friday, August 7th at the 52nd International Horn Symposium at the University of Oregon (Eugene).

Registered for the 52nd International Horn Symposium in August 2020

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.

Motivational Listening: Brahms Horn Trio - Andante

Hands down, my absolute favorite recordings of this movement! Always has been! Always will be!!! (Barry Tuckwell)

To Be Like Bamboo...

I don't think I have a spirit animal, but I do have a spirit plant. It's bamboo - as it is very strong, yet bends, making it capable of surviving immense hardship where most other mighty trees and plants would break. To me it signifies great strength and perseverance.

Motivational Listening: Pavane pour une Infante defunte

Beautiful!!!! And nicely done with organ.....cool!

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

My Twin Sister Playing Trumpet at Church!

My beautiful and talented twin sister rehearsing for today's church service! I am sad that I am stuck at work missing her performance!!! I love hearing her play and seeing her do what she loves! It also warms my heart seeing my nephew Nathan being a goofy kid. Love my family so much!!! 🎺✨🎺✨ 🥰🥰🥰🥰🥰

Music Is a Part of Me

At Orchestra Rehearsal 2020

The rest of the horn section! We just finished a sectional. During rehearsals my nephew Nathan, who I'm teaching horn, sits back stage directly behind us in the large concert hall. We took a goofy photo together during break. 📯

Tell Your Story

🥀🌷 #focaldystonia #musiciansdystonia

Symphony Orchestra 2020: Dvorak New World

Not my first time playing this symphony, but is my first time playing 4th horn on Dvorak Symphony No.9. It's even more fun playing those awesome low parts and my embouchure dystonia is manageable in this register. But the greatest blessing is playing it with family. Was planning on taking a photo of us all together on stage, but forgot! 📯🎶😊

Instrument Betrayal

When your friends or family catch you arguing with your instrument during practice.
#embouchuredystonia

Barry Tuckwell - The Greatest Influence of my Life

My greatest influence of all time has passed away today. No one will ever replace this legend. No words can express how saddening this is. I know this sounds odd, but I'm more heart broken over his passing than my recent loss of everything. This man has been all I've ever strived to be as a musician and professional. My north star which led me to my life purpose and calling. Not a day I regret following the path of the horn. It's given me so much....even if I have embouchure dystonia/neurological disorder now. Would do it all over again. From the very first moment I heard him, I loved his sound and knew I wanted to pursue horn playing. Not just in style, but I value his wisdom, professionalism, deep love for horn, and dedication to passing on the overall knowledge and study of the horn; it's repertoire and history. A true scholar. I love love LOVE this man. May heaven make a special place for Barry Tuckwell and his horn. His sound will forever echo in our realm well past this day. 📯💔😢 One of my favorite videos of him.....there's a reason he mastered it better than all of us: https://youtu.be/XSOzrP0FSJ8