Musicians with Dystonia Bulletin Board

I’m a pianist (also called Paul)who suffered from dystonia of the RH that affected the thumb. The cramping occurred most severely in downward passages as the thumb is the pivot over which the hand turns. The dystonic movement was a wrenching flexion of the thumb so that it met the little finger. Secondary movements - observable in film - were index finger pointing straight up, chronic lowering of the wrist and a jolting tension that even affected facial muscles. The film was used to a neurologist in London to diagnose FD. Playing a simple scale down over one octave was impossible to execute except at a very slow speed.

I use the past tense as for more than a year I have been 100 percent free from dystonia. One or two other musicians have also made complete - as opposed to partial - recoveries. The only noticeable difference is a somewhat more slender tone in quick passages .

My starting point was freeze-frame examination of film to identify secondary movements that had become welded to dystonic flexion. The successful attempt at separation was the result of extensive constraint induced movement therapy aimed at eliminating compensatory movements. I used a system of repetitive pitch cycles articulated against incremental divisions of a beat. For example the finger/pitch pattern may be 1,5,3,5 with mm=crotchet beat 60. A beat division of 4 (semi quavers) corresponds with the finger pattern after just one beat. Other divisions, however, take longer to complete a cycle. Triplets, for example, take 4 beats 153-515-351-535. Quintuplets and septuplets also require longer cycles and a greater degree of concentration and control. Add the LH playing a finger pattern of a different length and cycles might only coincide after 20 beats or so, whereupon the beat division is incremented yet again. Traditional associations of pitch and time become ruptured and the brain is forced to seek new articulative identities. This is very different from simple repetition. I can send you the scores I used if you have access to MusicWorks. The later ones look very daunting, but all follow the theme outlined above and over hours each day for months worked wonders for me.

I also decided NEVER to experience the sensation of FD again. All scores went into the loft. Almost all repertory was put on indefinite ice. My posture is now is very different - higher seating position, higher wrists, knees level with the piano edge(rather than the keys), index finger parallel with keys, turning movements over the thumb similar to turning a key in a lock, and with middle c slightly right of my centre. Simply changing your posture will not make a difference to dystonia (which occurs in the brain), but it may facilitate ease of movement once the flexion has been eliminated.

Execution of downward arpeggios/arpeggiated passages proved the last and most obstinate technique to completely yield. One moment they were not entirely secure - the next they were. How? I simply lifted my little finger on the downward path so that it remained fairly level and close to the fourth finger. The result was immediate and complete fluency. I was suddenly able to play hitherto awkward passages in Chopin’s Ab major Ballade that I had been revising that day. I forgot to mention this the last time I posted here.

Complete recovery is not easy, but it can be done within two years if you are ruthless enough.

Hope this helps

Paul