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Musicians with "Focal Dystonia"

Discussion in 'General Discussion Subforum' started by Dnewell77, Oct 18, 2018.

  1. Dnewell77

    Dnewell77 New Member

    Hello,

    I am new to the forum but I am a guitarist and have been treating my "musicians dystonia" as MBS and have seen very positive results. I have searched the forum and noticed some other people have dystonia and have had success recovering from it. Just wanted to see if anyone has any stories or advice on how they overcame or are overcoming their symptoms. As a professional session musician it can get tough to manage the symptoms and remain outcome independent. I have found body mapping (taught to me by the brilliant Jerald Harscher) and working with Kenny Werner's effortless mastery book have helped me a bit as well. What is working for you guys?

    Thanks for reading,
    Daniel
     
  2. EricFeelsThisWay

    EricFeelsThisWay Peer Supporter

    Can you explain more of what focal dystonia is? I’m a musician too and I’m curious. Hesitant to ask as these kinds of conditions have a contagious nature :-/ But here we go.
     
  3. EileenS

    EileenS Well known member

    I found many links explaining what it is including this one. https://dystoniacanada.org/about-dystonia/musicians-dystonias/focal-hand (Focal Hand Dystonia in Musicians | Dystonia Medical Research Foundation Canada)
    Note that it is more common in musicians than any other professional including dentists, surgeons, and writers. The husband of one of my best friends is a top Canadian surgeon and an avid guitar player in his spare time and yet he has never had an issue with muscles in his hands. I'm not a professional musician, but music was the focal point of my life until I graduated university (piano, flute, singing). I bet it is more common amongst musicians because you have to strongly feel your emotions into your music whereas the other professions don't do that with their craft. The surgeon I know is releasing his workday emotions when he comes home and plays his guitar. For you guys, maybe your emotions get trapped because music is your life?

    I have a recent example of emotions and music. I like to feel the music emotionally when I go to a concert and my TMS symptoms were really bothering me at a concert two nights ago. The musicians were very good (a top Cdn group from the early '90's), but they were also annoying me because they played like they were playing in a studio rather than performing for an audience (I felt they were ignoring us.) I knew that was why my symptoms were acting up and my symptoms were still bad yesterday morning, so I journaled a 'review' about the group and today I'm fine.
     
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  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Great example of how we perfectionists can end up with symptoms from something that is not emotionally "important " or earth-shattering! It can simply be something that upsets our inner sense of what's "right".

    @EileenS is very wise :joyful:
     
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  5. Dnewell77

    Dnewell77 New Member

    "Focal Dystonia" is essentially a trash can diagnosis that a neurologist will give to a musician when they can't figure out what is wrong with them. It can present in many different ways on many instruments. Some people have involuntary curling or extended of fingers, odd positions ing etc. Essentially it makes it so you have trouble playing your instrument freely and you feel like your brain unlearned how to play.

    My symptoms are more subtle than others. You can't really see any curling or anything i just have super odd muscle movements and my hands dont do what i want them or expect them to do. I saw several doctors and none of them could tell me what was wrong or how to fix it. This was pretty awful because i play music for a living and it was affecting my work. Eventually a neurologist said i probably have FD and thats what i thought i had anyway. He told me there was nothing he could do for me and there is no cure. Thats why FD gets so bad in so many people is that medical doctors scare all these musicians and they get worse.

    I have worked with and spoken to many people who have recovered and many people nowadays see it is as a form of TMS. The version of focal dystonia quoted a lot around here is "Spasmodic Dysphonia" which is focal dystonia of the vocal cords.
     
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  6. miquelb3

    miquelb3 Well known member

    Professional musicians are very, VERY prone to pain and another symptoms, mainly in back, arms, shoulders and hands (professional runners in legs, knees, feet !).
    They are struggling all the life with his/her instrument.... and their public image as artists!
    They are very perfectionist (a professional need) and have the "top musicians" as reference.
    Probably too much psychological pressure, too much responsability, doubts and more doubts about "artistic value", too much self-criticism, too much fear of public and colleagues judgements.
    They assume that pain and other conditions are due to overuse, bad technique, repetitive strain,.... BUT the real, ultimate cause is probably TMS.
    Focal dystonia is one of the worse symptons of TMS in musicians (like fibromyalgia for non musicians). With little success docs treat FD as a neurologic disorder (often with "no solution").
    FD is very common in fingers for string and piano players ... but in lips for wind players (both brass and wood).
    FD in musicians is a very interesting issue. The "child inside us" becomes very angry and furious for the "life of sacrifice" that to be a "good musician" implies, actually when "success" never comes... and failure is an everyday and panicking possibility.
    Chronic pain, FD and other symptoms are the "perfect distraction" for not seeing that "very enraged, lazy, irresponsible child" inside us.

    Just guessing, of course.

    M.
     
  7. Sofa

    Sofa Well known member

    77- This is interesting and thanks for sharing. I hope you and others dealing with this predicament can solve it. Keep us posted.

    I play the guitar as well (not as a professional) and have wondered about arthritis in my left finger joints at times. Winter is worse. Driving a car I only use two fingers of my left hand which is not wise for a number of reasons, lol. I try to use both hands when I find myself stressing my guitar fingers (index and middle).

    For REAL musicians such as yourself and others to have to deal with these worries....seems like a "life can be cruel" thing..

    Anyway, hopefully more people will post here and help you get cured fully!
     
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  8. stradivarius

    stradivarius Peer Supporter

    Hi Dnewell7, I am a musician too but don't have dystonia - I have whole body nerve inflammation. I feel your pain! However, TG957's posts may be of help to you as she has dystonia and has overcome a lot. I wish you all the best.
     
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  9. BRL-MGHIHP

    BRL-MGHIHP Newcomer

    Hello, I came across this discussion from googling and thought our research might be of interest to some of you. Thank you for bringing this topic up and hopefully scientific investigation will help future treatment of 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. 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: MRI scan) and Voice Center (visit 2: transcranial magnetic stimulation).
    Time: 2 visits, with 2.5-3 hr for each visit.
    Compensation: $200. Travel expense from other states covered up to $500 additionally based on distance.
    Funding resource: National Institutes of Health (NIH)
    Study contact: Yi-Ling (Irene) Kuo, ykuo@mghihp.edu

    Please email me for more details. Thank you!

    Focal dystonia research_BRL.jpg
     

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