The Mindful Pianist

Thank you The Japan Times for featuring musician’s dystonia, research and works around retraining and recovery.

My story is found in the article.

The neurological disorder that 'kills culture' Great pianists aren't made overnight, it takes years of practice. It can all be undone in a matter of days, however, due to a medical condition called dystonia.

Q: I feel very optimistic when I experience subtle but definite improvement in my playing, but sometimes life with FD hits so hard that I feel so hopeless in the moment and feel like I should give up playing my instrument. Do you have any advice to keep my motivation up?

A: Having FD is difficult and retraining itself is also difficult. It is a tedious and uncomfortable process that forces us to experience true patience. I think it is quite natural that we feel overwhelmed and hopeless at times.

From what I gather, it seems like you have experienced improvement. If so, I'll keep on doing what you are doing until you hit a plateau, and then try something different until you find something that works again. Expect physical and emotional setbacks. These are not only unavoidable but are essential seasons of the recovery process. As we train ourselves to face and resolve the most uncomfortable and eerie dystonic sensation especially when we try to align ourselves in the most optimal position and movements, in the same way, I think we can not avoid these feelings when we are experiencing hardships in this process to cross over to the better side. The more we try to avoid and compensate, the baggage tends to grow.

Most of us can not keep our motivation up all the time, but creating an environment where we can most care for ourselves would make a big difference in the amount of energy you can allocate to retraining and shortening the time needed to recuperate from setbacks.

Let's do the obvious, sleep well ,eat well and replace bad habits with good ones. Let's slow down and find ways to keep your stress level at check. Surround yourself with supportive people. Find guidance. Attend other emotional issues that are not directly related to FD so that you can again, allocate the most energy to retraining.

It is the hardest in the beginning stages of your recovery until you start experiencing positive changes. You will feel that you are in constant ups and downs while you're in the midst of it. It tends to get better as you progress and the ups and downs will not be as drastic.

Q: I feel tremendous amount of uncomfortable, irritable and almost spooky sensation during certain tasks. Is this what you call a dystonic reaction?

A: No. The sensation that you are feeling is what I call 'dystonic eeriness'. This sensation is probably the most difficult to explain to others without focal dystonia. It is the uncomfortable, eerie, unknown and almost scary sensation that accompanies certain certain stimuli or specific physical alignment during movements. Dystonic reaction is what I might define as a physical symptom experienced as burst of extreme tension, and although the dystonic eeriness often accompanies or precedes a dystonic reaction, it is very helpful to distinguish these two apart when you are retraining.

In short, you would want to avoid dystonic reaction as much as you can. In the other hand, as uncomfortable as it seems, you do not want to avoid dystonic eeriness since this sensation tends to appear when you experience group of stimuli when you are moving closest to your natural movement when you are playing your instrument.

The dystonic eeriness is a very powerful source to keep you out of your natural alignment. Your subconscious mind will try everything to avoid it. The challenge is to face it, try out different ways to dissolve the dystonic eeriness so you feel more at ease within your natural movement.

"Should I stop playing (performing/practicing) all together?"

QUESTION : Would you say that it is best to stop playing completely so that I would avoid situations that trigger dystonic tensions and only focus on retraining by slowly becoming aware of the muscle responses as you start to initiate a movement i.e. towards the instrument? Sometimes I feel sensations in my forearm (hand/fingers etc) even when I’m only thinking about playing.

My ANSWER: If you haven't experienced much improvement in your condition, in my experience it's best to stop playing the way you've always had, which triggers dystonic responses and to start retraining. The retraining that I recommend for beginners is to become aware of all dystonic reactions triggered by certain thought process, visual auditory and sensory stimuli, specific positioning of the body within any given movement and specific speed momentum. Once you are aware of the trigger and your body's response, you can slowly re-introduce the trigger in a way that your body would not respond dystonically until you become comfortable. I know.. it's easy said then done. Becoming aware of your automatic responses is very difficult. It is as difficult as being aware of your emotional responses to certain triggers in your daily life and requires another person's perspective or develop observational eyes.