Chiropractic Work: Neck Traction

Following up on my previous post about the chiropractic work being done on my neck. In the last post I mentioned how I purchased a years worth of chiropractic sessions.

A few months ago my chiropracter said my upper spine/neck needed additional support outside of the sessions; not just stretching the spine manually, but mechanically too. The spine in my neck is too compressed (including my jaw) and they don't know why. He said I needed to buy a cervical neck traction device. Reminding you I've had severe neck problems since a teenager.

I ended up buying the inflatable device (very effective and only 17 bucks) rather than the "craddle-sling" you see most people use. I also bought a professional back massager device as well.

Anyways, the point of traction is to pull the head up and away from the neck, stretching the muscles and ligaments around the vertebrae of the spine and expanding the space between the vertebrae. This gives the muscles the opportunity to relax and for pinched nerves to release further.

At first I thought, "This is like a neck pillow you buy for traveling. How is it different? And will it even make that big of a difference?"

I can't even begin to explain how much it has helped me! It's completely resolved my jaw compression on the right side and I no longer experience spasms at rest or accidentally biting my tongue. I also breath better when I sleep because my neck and shoulder muscles are completely relaxed.

After I had my gallbladder surgery I didn't use it for a couple weeks and I immediately started to feel my neck muscles starting to pinch and pull deep down.

Nothing makes you realize how much pressure gravity puts on your body than after experiencing chiropractic work. I keep thinking, "How have I survived without this?"

The only other time I felt this much relief was when I had 10 botox injections in my cervical muscles when 14 years old to release a severely pinched nerve that they weren't sure was cervical dystonia due to similar symptoms.

I know chiropractic work isn't for everyone, but I just needed to keep up-to-date with what has been helping me. This in return has helped me with my playing as well!!! I feel way less restricted due to my jaw moving more freely. 📯🎶

Hearing Your Former Self Play

I had my ipod set to random while working out and it started playing some classical pieces. I was going to change it but listened instead. For a while I thought, "Oh wow! I really love the principal horn player. What a gorgeous sound...who is this?!?!"

I thought it might be a european player, but I looked down and it's me. How embarrassing. Only has happened twice in my life - where I didn't recognize my own playing. Must have not heard myself play symptom-free in years. haha!

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First Steps in Recovery

Practice Time with Family!

Allie (my twin sister) and I are practicing at our old stomping grounds - The University of Northern Colorado, UNC! So many memories here!! 💕

Contribution

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The Point is to Understand

Similarly professional and advanced musicians know what it takes to play at their level/caliber, but very few understand career ending setbacks because it requires experience - having gone through the same devastating injury/disorder in order to help others.

This goes double for those who help others with focal dystonia because research has shown that the most effective rehabilitation strategy so far (besides DBS/brain surgery coming in at #1) has been retraining the sensory and brain pathways in order to restore motor skills. This is no easy walk in the park.

Who understands the process better than musicians with the disorder and professional neurologists who invest years of research into studying it? A neurologist who is dually a dystonic musician and medical professional would be highly sought after if one where to exist.

Because there is no known cure means that treatment is symptomatic. Just because there isn't a cure or etiology doesn't mean musicians with dystonia should ignore their symptoms.

I say this because I've had several brass professionals and teachers tell me and other dystonic brass players to ignore the symptoms, not get caught up in addressing individual symptoms and instead focus on musicality and air. There are so many things wrong with that advice I could write a book!

That's like going to the doctor and telling them, "I don't know what caused this cut on my leg, so please don't treat the symptoms/bleeding!"

There are a number of things that could have caused the cut, but what really matters right now is visually obvious. Even if the bleeding isn't successfully stopped all at once, we must attempt to and go from there.

If you look at any disorder or illness that doesn't have a known cause or cure (there are a lot), the only solution is to focus on alleviating the symptoms! This is important because finding ways to decrease the various symptoms (even if not a cure) leads to overall improvement and in return this increases the person's quality of life.

Treatment is not just about finding a cure. Treatment involves overall well-being of the afflicted person and giving them the tools to reduce their symptoms as much as possible so that even if they can't completely overcome it, they can come very close. In fact, enough to manage it and re-establish their love of playing again. It gives them hope. Most importantly they witness progress and it's through this process of understanding we learn more about how this complex disorder works!

We can't just throw everything we know about it as a neurological disorder out the window just because there is no cure yet. I say this because again, I have been told (along with other dystonic brass players) by professional brass players and teachers that due to there being no cure we should dismiss it as a neurological disorder (as if doctor's randomly labeled it focal dystonia for no good reason and none of the research and evidence means anything).

Do you think telling a musician with dystonia that it's all in their head is going to help when you don't even know anything about the disorder, have never had it, and you're just making assumptions and believe you're right because you've evading injury or due to your status/reputation makes you more qualified to give advice?

Let me tell you the quality of skill level and good habits in a musician does not make you less likely to develop dystonia or avoid an injury.

In fact, you are more prone to developing focal dystonia if you are healthy and at a high skill level - e.g. an established professional musician, advanced or highly skilled amateur, classically trained (e.g. a classical musician), natural, fast learner/have always excelled in your studies and playing, in leadership positions, at the height of playing level, male gender, middle-aged, have writers cramp or it runs in the family or dystonia does.

Telling a musician with dystonia to ignore the symptoms is ridiculous, or to stop retraining with another dystonic musician just because they are not a doctor is illogical (how the hell else are we going to gain any insight or move forward?). Equally it's unfair to tell them that no neurological rehabilitation method is worthwhile just because it's not a definite cure. The same goes for telling them to not try standard medication prescribed (for some it actually helps). And more aggravating is when others tell musicians with dystonia to not trust neurologists.

Yes, there are few neurologists who really understand it in-depth, but the ones that do are on our side and researching it because they want to help us. We must not forget that. We need them, and they need us in order to find answers.

By telling musicians with dystonia to avoid seeking the help of others who have it, avoid neurologist, ignore the research, ignore the symptoms, and only trust professional musicians who have never dealt with an injury/disorder is highly presumptuous, misinformed, dangerous, and just plain stupid logic.

Yet this is how things continue to be. Can't tell you how many times I've been told to go talk to "so-and-so" (insert name of random professional musician who knows nothing but how to give advice on mechanics, technique, breathing, or who tells me it's all in my head). It may be out of good intention but it's more harmful than helpful...and disappointing.

Stop with the assumptions, bad advice, and not giving musicians who actually have experienced career-ending setbacks and understand the situation credit.

Just like the treatment of most other neurological disorders, focal dystonia treatment must be individualized and requires great depth of understanding; not only from a medical standpoint, but from the viewpoint of the afflicted. Therefore, both sides (neurologist and dystonic musicians) must come together to create a holistic and cohesive approach. 💕

Thank you!! 500 Followers!

Today I got a notification that I reached 500 followers on my facebook page Living with Embouchure Dystonia!

Although I started my blog in 2011, I didn't start my facebook page until six years later. At the time I didn't keep it updated because I don't like attention; I'd rather be found when needed (like a library book) than posting all my stuff up front in a more mainstream manner. Thanks to the suggestion of a highly encouraging friend, it wasn't until this last year I really started to utilize the page for sharing my blog posts and I started a website.

I know that this complex and mysterious disorder (Focal Task-Specific Embouchure Dystonia) scares serious brass and wind musicians since most avoid speaking about the subject of injuries, disorders, and setbacks in general.

It is no surprise that several (but not all) musicians who have never been through a major debilitating setback refuse to believe such a disorder exists; many don't believe you can get injured by the simple act of playing music; that setbacks can be altogether avoided if you have healthy habits and proper mechanics; and that if you end up injured or develop a disorder then you are doing something wrong....
......which all 4 of these beliefs are false, and to be honest - ignorant. You can't label everything as "bad habits."

Sports medicine professionals and professional athletes who have gone through injuries or who have dystonia would wonder what is wrong with you if considering any of the above as the "problem and answer" to majority of setbacks that happen.

Therefore it makes me feel hope knowing that there are a handful who are able to look past the fear and instead support the understanding of this complex disorder and know how important it is to break down these false misconceptions surrounding musician injuries and disorders. The gap between the medical field and musicians must be bridged. It's never going to happen if musicians keep avoiding the subject and lack education on it.

Musicians with injuries and disorders don't ask for pity (it's not like we have leprosy), but instead respect and understanding in knowing that setbacks are not easily avoidable, resolved, or a simple matter that can be summarized and labeled as the fault of the musician only/themselves.

Many don't speak out about their injuries due to fear of being judged, damaging their reputation, or because they can no longer put up with the disappointment in their peers and colleagues who cannot or refuse to understand their situation.

And often times peers and colleagues don't value an injured musicians perspective and deep insight because they hold a false (and harmful) belief that "injured musicians (even if a close friend or long-time colleague) must not know how to take care of themselves and need the advice of a non-injured musician who has evaded injury....otherwise they would have never been in this situation to begin with".

Thank you again to those who have always been supportive and open-minded. I will always continue to write for those who have it, those who want to understand it (from a person's perspective who actually has it and devotes their life to understanding it and overcoming it), and for my own self and wellbeing.

I know this wasn't the most heartfelt thank you, but please know it really does mean a lot. You all are making a huge change in the direction of the future for those who do end up injured or develop a disorder (believe me, no one ever sees it coming or expects to end up in such a situation...NO ONE).

It's important to keep the doors of communication open, as well as minds! 😊 ❤️

- Katie Bergløf

The Mysteries Surrounding Dystonia

One time I had a non-dystonic horn player say to me, "You shouldn't focus on the symptoms, but instead on the root of the problem. The symptoms will just distract you. Let go of the negative chatter and destructive thoughts, sing what you want to hear and just don't think about it."

First of there are many flawed notions in this statement. The first implying that they know the root cause of focal dystonia, secondly that the cause is the same as the cure to overcoming the disorder. Third, they are implying that the symptoms are not important to address and there is no need to focus on them in order to overcome the disorder. Fourth, they are making the notion that the symptoms are nothing but a distraction and dangerous to focus on. Fifthly they are assuming our thoughts are nothing but negative and destructive. Lastly, they are implying that dystonia is not a neurological disorder despite the research proving otherwise.

(A symptom is subjective - experienced by the person, A sign is objective - visible to others/outside the self).

"Treat the patient, not just the disease" - just because there is no known cure, doesn't mean the person can't be treated and the symptoms addressed in a way that it can be reversed to an extent. Just because there isn't a cure, doesn't make attempts to address the symptoms not valid. Physical rehabilitation or retraining has been the most effective and most see improvement, and a small handful come close to a full recovery. Addressing the symptoms can help improve and maintain functionality and the quality of life of the musician." 

I am supportive of medical professionals and neurologist who research musician's dystonia, but like in most of the medical field, there are several patients that get diagnosed with diseases or disorders that have no cure and handed a list of medications or treatment options, but seldom is there an understanding of how to care for the patient....and this is not the doctors fault....addressing patients who have something with no cure and medication doesn't work that well, is no easy walk in the park, and all patients require a highly individualized plan if really making an effort to help them.

That is why I always tell others who have embouchure dystonia, seek out someone on your instrument who has been through this...try to find as many as you can to get ideas for what has helped them and may help you. See if some of them will work with you and if you really want the help then you must be willing to show everything (visually) that's going on with your playing over skype or video chat....not a pre-recording either is best.

Above all else your entire history of playing needs to be laid out in front. It can be hard sometimes to get patients to observer and tell you what they are truly feeling (physically and emotionally). Most can tell you how stressed out they are, but most don't even know what to be looking for jotting down in their observations, or what they should take note of in their playing history or current abilities. 

The musician must be guided through both the physical rehabilitation and the emotional hurdles that come with coping with the disease. They also must be retrained how to maintain a state of mindfulness while engaging in rehabilitation. Being a holistic approach required, many require a combination of services which can include anything from the help of neurologists, physical therapists, body movement specialists, musicians with focal dystonia who help rehabilitate, therapy, and even alternative medical help. It really is up to the patient to find what works best for them, to keep an open mind, and most importantly remember they know their own body and state of severity better than anyone else does, so it's necessary to do what is best for you despite what others may emphasize. For example, some may have additional maladies along with their dystonia; ex. TMJ, and this needs to incorporated into the whole plan...it can't just be ignored because it too involves the jaw and overlaps with the dystonia which involves the facial muscles and nerve function. Another example is someone highly spiritual who struggles with losing faith during this process....during this time you might emphasize how important it is to do activities that help them feel more intune with their spirituality, or something as simple as joining a musician's with dystonia group where one feels more included and in-this-together. Sometimes that can provide encouragement and hope. 

Because musician's dystonia is very specific to our profession, it is hard for neurologists to understand what the disorder all encompasses, including how to gauge our severity of symptoms, degradation, or improvement in symptoms. It's not easily measurable and they are still trying to find better tools and ways to evaluate us. 

It's important to evaluate how the disorder is impacting the patients quality of life, functionality; and functionality can be assessed both through observation, asking questions, and qualitative means. 

Most importantly for musicians who are effected, try to remember even though some doctors and neurologists may not be the best at providing us support or effective treatment after diagnosis, they are on our side, and there are a handful of them out there who are passionate about finding answers....most of all we need them and we need to bridge the gap between the medical field and the performance arts. This would require more education on musician's behalf, because if we are ever to see more medical professionals out there that understand what it's like, they need to be dually musicians and medical professionals....and it takes a musician to bridge that gap. 

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Knowing the cure to focal dystonia is ideal, but just because we dont know the etiology, doesn't mean that we should ignore observing the signs and symptoms and learn more about what's going on. That's how it was catagorized as a neurological disorder in the first place! Because it is one....we justdon't know how the neurological disorder comes about or why. The signs and symptoms are classic neurological signs. If you look up the term, "spacicity" - meaning spasms, anytime there is involuntary muscle contractions happening to the body when doing a very precise or specific action (e.g. turning the head left, extending the arm, grasping a pen, blinking) or if it's ongoing (like in parkinsons) it is a tall-tell sign of a malfunction in the brain or spinal cord. 

The fact that it effects us also in very specific ways, for example; occurs when playing in mid-to-low register, but not high, air leaks on one-side or pertruding lip but not the other, lack of ability to sense/grab notes, range-specific, dynamic-specific, attack-specific, and symmetry-specific....this all points to the fact that there is a malfunction in our motor skills and sensory....it is not a "physical" problem, a mechanical problem, a bad habit occurring, or a result of tension....it is a tall-tell sign of motor skill abnormality. 

What gets me is why is it so difficult for musicians to realize that what we do requires a high level of refined precision to get to that advanced level of playing. We may feel it is natural and that things develop naturally if you simply practice. But we don't realize we're practicing 4 hours a day, with 7 hours of rehearsal a week, 1 hour of lessons a week, including playing in chamber groups, brass choirs, quinets, and gigs, etc. It becomes as easy as riding a bike.

But what we don't realize is the more refined our motor skills become, the more easily damaged or messed up they can become if something inhibits it. For example, there's this video of an engineer who wanted to conduct a bike-riding experiment. He loves riding bike, but his co-workers decided to play a trick on him one day and they took his bike and made it so that the wheel turned left when he went right, and the wheel went right when he turned left. He thought this might be a challenge for a couple minutes and then his brain would grasp right onto how it worked and he would just be able to ride although a little wobbly....kind of like a video game controller and getting use to the changed settings......but to his surprise, he couldn't even balance the bike with two feet on the pedals, let alone get it moving. He was so confused as to why it was SO challenging. It took him 60 days to learn how to ride it and he had to put in intense concentration. He tested his son  who was a kid and his son took 10 days to learn how to ride it.

He realized that once the brain has learned a motor skill such as riding a bike, and I mean really digging the brain pathway deep and you don't even realize it.....that brain pathway is practically unchangeable the older you get and also the amount of time you spend developing that brain pathway determines how deeply engrained it is. Now, if that brain is asked to do the same thing "i.e. ride a bike," and the bike functions have changed, the brain pathway is not going to go into "i'm learning a new motor skill mode," but instead into, "somethings wrong mode" and its going to fight you every step of the way because that pathway is so deep (the bike has become an extension of the body rather than an innatimate object that you are riding) and the brain is always going to resort to what it's body map of how the bike has always operated. 

It's the same with musician's dystonia. It's also very similar to a stroke victim. It takes under a minute to experience a stroke, and next you know you can't walk....and it's something you've been doing your entire life since you were 3 years old. How is something like that just gone....I mean not even partially gone or slightly gone...but it's entirely gone! You have to relearn how to walk again. You know what it feels like to walk, you know what your body should be doing, and you don't even have to think about it....but here you are having to think about it and it takes so much physical effort and mental effort intensified into every little movement initiated. 

Focal dystonia is the same, it starts out slow, it progresses, and the next thing you know it feels like you can't play in teh blink of an eye. What happened? Just a month ago you were able to play Strauss tone poems, Mahler symphonies, and play the entrance to Ravel's Piano Concerto with grace and beauty effortlessly....you didn't feel physically taxed, you feel good, in fact great, like you're at the height of your playing abilities and you're going places, and you love the way you sound and excited and fortunate that you are capable of playing such pieces...it's taken a lifetime to get here, and there's never been a physical setback or tension problems, etc.....and now a month later you can barely get through Mary Had a Little Lamb, let alone get a sound out. It feels like a virus is taking over and you can physically feel it beneath your skin, this lack of stability is growing and your ability to sense things or feel how to slot things too....and you practice more and more to try to resolve it just gets worse, so then you take time off, and that doesn't help either....it's like your body is revolting against you now that you are functioning at a high level of motor skills. It's like a brand new computer graphics card streaming effortlessly and then the internet  starts cutting in and out causing a delay in the imaging. It's not the card that's degrading (or the body), it's the signal that's being sent which has gotten weak or degraded after years of functioning normally. 

However, I believe it is a combination of genetic and environmental influences, just like stuttering, and most other neurological disorders. For example stuttering developed in childhood is considered genetic but includes a combination of trigger elements such as motor skills, language skills, and temperment. Disruption in the speech pattern is due to an interaction of the previous along with other various factors.
Treatment options include training to change speech patterns, counseling to minimize negative reactions, pharmaceutical interventions, and electronic devices that enhance fluency. Self-help and support groups also play a prominent role in recovery for many people who stutter.

It's important to know that finding a cure does not point towards the definite cause of something. (For example; we know that strep throat is a result of bacteria, so we kill the bacteria with medication, but why the strain keeps changing and passed on from person to person, or how we can avoid it indefinitely doesn't exist. The same with diabetes. We can treat it with insulin and even though it can return a person to normal function, they still live with it the rest of their lives).

Also just because we don't have a cure doesn't mean the symptoms cannot or should not be treated. For example, imagine you go to the doctor and tell the doctor you somehow scraped your knee and it's bleeding. You don't know what caused it, but you're bleeding. The doctor is going to tell you it needs to be disinfected, to put pressure on it, and a band-aid or bandage. But if you tell the doctor, "why would you treat it without knowing what caused it?" ...he's going to look at you like you're crazy. It's because you have to treat the symptoms too, even if there is no known cure or cause....the most you can do is treat it and try to heal or lesson the impact. For example, we don't know what causes MS, Alzheimers, Dementia, Autism, etc. and for most there is no formal or standard way of diagnosing it through some type of blood or brain test....it's based off the signs and symptoms which give tell-tail signs of what it is. They may not know the cause, but they can tell when something is being specifically effected the most by the brain such as language, motor skills, memory, etc.

It's not surprising that musician's dystonia involves dysfunction in the brain because we require such a high level of efficiency in motor skills.

Inspire and Awaken Others

I love writing about taboo things like musician injuries and musician disorders; more specifically focal embouchure dystonia and raising awareness....god forbid it ever happen to you someday. No one ever imagines it could happen to them especially when they feel in their prime and it comes out of left field. Wouldn't wish it on anyone.

It may not seem as life-threatening as a lethal illness, but losing what you love, your calling, your career, greatest pursuit, and what gives you purpose...it's as painful as losing a loved one, it leaves you as helpless because it is a form of degraded mobility, and it can deprive one's life of meaning...and yes, even some find it hard to keep the will to live. Nothing can fully replace that loss. Don't tell them to try to move on with a new instrument or profession.

When your entire life revolves around something and you've invested years into it, disassociating is impossible for some. It's a loss of self and identity too.

That's why I continue to write. So I can relate to those who are going through the process and understand how truly frustrating and debilitating it is on every level during the aftermath and grieving process - physically, emotionally, mentally, and even spiritually. It is no simple matter.

I've never been one to suffer in silence just for the sake of reputation, nor am I one to go out without a fight.

That's why my passion and very protective side comes out when standing up for those who have the disorder and are ignorantly labelled or told they are musicians who are "simply dealing with bad habits or performance anxiety," when that couldn't be farther from the damn truth! 🔥

It's not so much that I love what I do (it's not like I chose to have focal dystonia), but I love seeing that fire in other's eyes again when they say, "I can overcome this. I'm not giving up. I can pave the pathway one step at a time."

That's all that really matters. Helping others and making a difference even if in the smallest way. I'd rather be helping others stand up after they fall than competing in music politics. I will say I don't miss the competitive arrogance or egos you see in several musicians, even though I miss the act of playing, hearing my own sound, and performing alongside friends and colleagues the most.

I don't like victimizing myself and prefer to view myself as a survivor, but I know what it's like to grieve and the waves will come and go. Therefore, I want others to know there's nothing wrong with that and it's okay to mourn, to express your highs and lows because that is part of the process. <3

Slow Progress...

#livingwithembouchuredystonia #musiciansdystonia #handdystonia #embouchuredystonia #focaldystonia #taskspecificdystonia

Britannica: Muscle Disease Pathology

This is one of the best overviews of pathologies of muscle disease, disorders, and weakness. Written by Walter G. Bradley, Richard Humphrey, Tudor Edwards, and Ronald A. Henson. It's well written so that most who are not medical professionals can follow. I hope you read it! The section over muscle nerves and neurons explains a lot about how weakness is not simply a result of overexertion. I really wish all of this was taught to musicians as a part of their education. Not only is it important, but I find it rather fascinating in general.

https://www.britannica.com/science/muscle-disease?fbclid=IwAR0lkrLChFbcz-p7SUp9abuV6DqTwge62PNu6A3gKnWuj9H3Bj65wPgHrgc