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). 😊💕

Video: Collapsed and Puckered Embouchure with Dystonia

Haven't recorded a video in a really long time! Well, after a long duration of time of having very few symptoms, I of course get a day full of intense relapse symptoms. So I thought I'd record my relapse and also show what the symptoms look like on both a puckered, and on a collapsed embouchure.

So many people think that in order to overcome embouchure dystonia it requires a "fixing" of the embouchure setup by either puckering more, or loosening the embouchure more...and although less tension is key, it isn't the answer to overcoming embouchure dystonia. No matter what way I form my embouchure, I still deal with the symptoms, and I always have to adapt to them and try to iron out the contractions to an extent. But the symptoms are never 100% non-existent.

*I want to clarify that it is my left side that has the most visual symptoms (i.e. air leaks, uncontrollable rolled out lower lip on the side, and corner moving all over the place), and my right side that looks stable, yet it feels stiff and flacid at the same time, and my upper lip is raised up so much on that side. 

I tried to actually plan out my recording this time. The first thing I did was play a low excerpt with a collapsed embouchure/no tongue (i.e. air-attacks) zoomed in and then zoomed out. The second thing I did was play the same low excerpt with an extremely puckered embouchure (as puckered as my muscles would allow me) with tonguing, zoomed in and then zoomed out. Then I did the same with the higher register excerpt. 

31st Birthday Blog!

Finally making some time to update my blog. It's my 31st birthday today and I wanted to write! First off, thank you to everyone who contacted me this year, for those who have driven all the way to visit, and for the phone calls and e-mails! I hope I have been of some help and support. It has moved me to see others speaking up about what they are dealing with and sharing their own research and findings too.

This summer I am working on writing an article over FTSED, and a lecture/presentation to give at possible conferences this coming year. It is a lot to undertake and a bit overwhelming because I'm of course not a medical professional, but just a musician who can only share their experience with FTSED. However, I think it is important to not only make others aware of injuries through writing...but to speak about FTSED, music performance-related injuries, and resources out loud. It needs to be brought up not just at conferences, but around peers, and especially in schools where advanced musicians are training.

On a personal note, I have unfortunately experienced a lack of motivation to write lately, mainly because of my recent diagnosis of TMJ. The fact that I have another hurdle to overcome makes me frustrated. I don't know whether or not the TMJ is a result of trying to rehabilitate on my horn with a dysfunctional embouchure for the last couple years, OR if it has always been an underlying issue creeping up on me overtime and caused the damage and dystonia.

At least when I was dealing with my nerves flaring up and my dystonia symptoms setting off, I could manage it and still play/rehabilitate. But with TMJ now it's almost impossible to play my horn due to overwhelming pain, or even try...and that is what has thrown me into this slump. I still have hope that someway, somehow, I'll be able to afford medical care later on (probably not until I graduate) and get the jaw splint/guard.

Despite feeling down I have a lot to look forward to! One of my favorite professional horn players will be in Boulder playing principal horn with the Colorado Music Festival. During my undergraduate studies I had planned on going on to study with him for graduate school while he was teaching in Illinois at the time. However, I ended up with dystonia, and he ended up taking a job with an orchestra. So we haven't seen each other since 2010!

I think being around a horn player that I admire so much will be therapeutic for me and remind me of my roots and bring back some life to me. With FTSED, after so long of not playing with a group or being able to play your instrument, you begin to forget who you were...it's almost like a long lost memory...but every now-and-then, that passion that you felt for your instrument comes back at unpredictable times (at times it can be a happy feeling, and other times a sad feeling); it could happen while sitting at a coffee shop and your favorite horn concerto comes on the radio. Or when I am walking to a class and hear an orchestra rehearsing in a concert hall, or coming across an old photo of myself playing horn.

I've been missing horn playing more and more lately. I do feel no matter how much progress you make in rehabilitation, you go through not only physical relapses, but emotional too, but they become less intense over time. For instance, right now I am feeling down, but it is a bittersweet feeling. I am glad to look back on the past, but I am not devastated over it...just like missing a loved one...you think of all the good memories and think, "I sure do miss them, but I know they're still here with me in the little moments like this." I still hold faith all these years later that I will beat this embouchure dystonia!

Not to get off track. I'm also working out a lot this summer. Time to get in shape! I started a new job not long ago and am still involved in concierge work. I can't explain how much this area of work has helped me to get where I am today...even if it's not what I love, I do enjoy it and getting to know the people who travel through. I also have one year left at CU and I've worked SO HARD, I can't wait to graduate!!!

If anyone wants to share any links of interest related to performing arts related injuries, please feel free to comment or send me an e-mail. I'll gladly share! Thank you again for all those who have kept up with me over the years, and I will write more soon.

- Katie

Katie Berglof: My Neuromuscular Dentistry Results

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Since writing my last blog post, I recently underwent Neuromuscular Dentistry tests within the last two months on my jaw, muscles, and nerves. With as much pain as I'm in, I'm not surprised they found that my joint was messed up. Apparently my right side jaw joint is severely compressed, it should be positioned down and forward from where it currently rests, my spine is not curved in the back of my neck like it should be, my masseter muscle is not activating, and my bite is too deep and misaligned.  The right side of my face is in more excruciating pain than my left, and I have to massage and pop the joint back in place with my hand whenever I'm practicing instruments; horn, clarinet, flute, sax, etc.

My doctor has prescribed that I do not resort to undergoing surgery, and instead have a professional neuromuscular orthotic (dental splint) to realign my jaw first and position it back to where it should be. They would track my improvement using CMS (Jaw Tracking), and use Sonography, Electromyography, TENS, diagnostic casts, and diagnostic photographs; all as part of my treatment, testing, and tracking of progress.

They are confident this will help me tremendously because they had me undergo a TENS test and wear a splint  during one of my four hour visits and retested the readings on my bite, jaw movement, and strength, and it showed drastic improvement in my clench and motion. My face even felt relieved for almost a week after that.  I also believe this is the source of my problems, as most of my pain is coming from my joint area. I also wanted to share this research study over FTSED (Embouchure Dystonia) and dental splints: Three cases of Focal Embouchure Dystonia: Classifications and Successful Therapy using a Dental Splint.

I'm planning on using insurance from work to help with reducing the price of undergoing this. I'm not sure when I'll be able to afford it, but hoping someway, somehow, things will work out.

Cloud 9

Best practice ever!!!! I was actually very scared these last 2 weeks or so, as I was going through an intense relapse (the longest relapse I've experienced so far) and had to be careful; the relapse was different/weird this time around because my upper lip would have a random singular spasm while I was at rest (meaning not while I was playing, but while I was just watching TV or driving...which never happens), and the singular spasm was really forceful...almost painful. I felt like my embouchure was really freezing up like a muscle cramp and it was stuck like this. I couldn't relax it even with ice pack/heat packing or with stretching, etc. Then it swelled up randomly in week 2 even though I hadn't practiced (could have been something I ate). I thought "What the heck? Maybe I overdid it." I feel it's because I've been working my way into my treble clef/upper range and it takes a lot out of me...sometimes hard to tell how much is too much. So I rested for a couple weeks just letting my muscles settle, and could tell whether or not it was safe to play just by trying to form an embouchure. Even last week my boyfriend asked me, "Why are your lips quivering when I try to kiss you?" ...that was embarrassing to explain!!!! uhhhg.

But a couple days ago I felt like my face settled, was at rest and relaxed, so I went ahead today and practiced. I did a lot of stretches, and immediately saw the spasms melt away in the mirror as I stretched and re-checked them. My embouchure gave into relaxing and I started to play.

I did my overtone series exercise and I couldn't believe the improvement! It was unbelievable!!!! Remarkable!!!!!! I felt more definition of the space between the partials, and it wasn't frustrating/difficult to control the movement/fluidity as I went down into the lower partials on the F horn side. It felt natural and wonderful!!! I've never felt that natural ease of control ever before when working on overtones...usually something that's extremely difficult for me to control, and takes a lot of endurance. Hoping this improvement will stick and I can capture it on camera. It's just like another dystonic musician said, "You can't have a relapse unless there is significant improvement!"

I'm on cloud 9!!!! :D :D :D :D :D :D

A happy picture!