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."
"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.
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.
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.
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.
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