Musicians with "Focal Dystonia"

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

 

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.

 

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.

 

"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.

 

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.

 

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!

 

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.

 

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.

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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!

 

Hello everyone! It's been quite a unique journey, and I wanted to share my story of battling focal dystonia, a condition that has been rarely discussed. I realized that there aren't many posts or videos out there about dystonia, and I thought it was time to change that.

So, I decided to create a video that takes a funny twist on my recovery journey, complete with some "Before and After" shots, and I hope it brings a smile to your face.

Check it out and let me know what you think! ️





#FocalDystonia #RoadToRecovery #PianoPassion

 

Thank you so much for your heartwarming comment! I'm thrilled that the video brought a smile to your face It's a joy to share my journey with you all, and your kind words mean the world to me.

 

I don't want to blow his anonymity on line, BUT when I was just becoming involved with the music world, one of the best guitar players and songwriters I knew in Los Angeles had to QUIT touring and give up his record deal because of hand issues. Hit song on the radio, big excitement about his group,etc.

I didn't know him that well when I heard about it...a few years Later, I met him and played some sessions with him. He was AMAZING on guitar and was one of the best male vocalists I had ever heard.... I was hip to TMS by then and I couldn't help but poke around his life a little with questions. ...apparently he had quite a traumatic (abused) young life and was also responsible for an aging grandparent.
I looked him up the other day and saw he is still playing and recording..circa age 60!..but he lost the 'inertia' of all the early excitement in his career.
The number of conditions this can masquerade as is quite astonishing!

 

A well-known case of focal dystonia was pianist Leon Fleisher who had to give up on performing career. Spanish-Canadian neuroscientist Dr. Joaquin Farias himself was training as a pianist and developed focal dystonia. He was able to fully recover and developed a formal neuroplastic method to treat focal dystonia. Here is his website: https://www.fariastechnique.com/ (Dystonia Treatment)

 

Thank you for sharing this!

 

My dystonia was not a musician dystonia, but I found Farias technique very much aligned with the Dr. Schubiner's approach to TMS. I fully recovered, and now believe that any kind of dystonia can be successfully reversed by the mindbody approach. I am looking forward to reading dystonia success stories on this forum. Would be happy to share what I have done.