Kate Benessa

What does a musician do who’s not playing?  Not consciously, but I suppose inevitably, I gravitated towards anything rhythmic.  My love of poetry was reignited.  I read poetry to my daughter, memorizing some (Dickinson, Frost, and Madeline by Ludwig Bemelmans) so I could whisper them in the dark to help her sleep.  I started keeping a poetry notebook to write down favorite works, including some Italian ones, and of course, the Lorca guitar poems.

I flung myself into a flamenco dance class.  Years earlier, shortly after grad school, I studied flamenco guitar.  I was interested in learning the different rasgueado patterns, in addition to flamenco dance forms which are often referenced in classical guitar compositions.  Having attended many flamenco performances, I was curious to understand more about the dance, how it was constructed, how the steps are incorporated into the form of a 12 beat pattern.

And I was plenty mad and wanted to stamp my feet.

Even with focal dystonia, or despite it, I could play rasgueado (any sort of extensor move or flexing out was not hindered) and I could do all the great thumb work indicative of flamenco.  I tried to isolate flamenco music that utilized mostly rasgueado technique, thinking that that may be a good direction for me.  In dance class, I was learning the castanets and the technique of this instrument was fascinating.  The right hand makes an ima roll just like the guitar fingering used for tremolo.  I was concerned that focal dystonia would inhibit this technique and it did, at first.  My fingers curled under just as with playing guitar.  But slowly I gained success and I wondered if perhaps it was due to the changing arm positions, which moves from a full stretch out to the side, to over the head.  Was the additional arm movement beneficial by mixing up the signals sent to the brain?

Poetry, dance, castanets:   it was challenging and satisfying to think rhythmically and musically again.  I enjoyed the discipline of taking a class and participating in an art form.  Away from the rigor of a daily practice regimen on the guitar, it was invigorating and satisfying to practice a dance step in the kitchen while cooking dinner.

Moreover, I gained a private guitar student after having taken a hiatus from teaching.  Speaking with a student about music, and about the guitar specifically, energized me.  I gained new focus.  Additionally, I had not given up on regaining control of my playing.  I continued to experiment with different approaches:  I used medical adhesive to tape around one or two knuckles of the m finger, thus stiffening it and preventing it from curling.

In early 2009, after not having looking up focal dystonia on the internet for several years I decided to look again.  It was astonishing to discover so much more information, including a reference to several Guitar Review articles.  One article (Guitar Review issue #133, 2006) detailed a description with photos of the restorative technique employed by David Leisner for his own cure.  Wow!!  Thrilling!  The article was not yet online so I rushed to the local university library the next day and made a copy.  Leisner described using big muscles and moving the entire arm to strike the string rather than moving only a finger.  Quickly attempting this technique I was able to play immediately, and for the first time in nine years I played my guitar slowly, but accurately and with the the tone I desired.  At last!  A tone I hadn’t heard from my guitar in years.  It was simply a matter of a different approach.  And how exciting and completely satisfying this was.

From this point I knew I could recover.  I still loved playing the guitar.   However, I understood that the journey would be lengthy and that I may have to wait until my child entered first grade before I could get any significant practice time.

I continued to find new studies and experiments on the internet.  One study discussed the use of a splint.  Since taping accomplished a similar result to what the splint did I adopted this procedure right away.  Not having anything appropriate on hand, but having a house loaded with child’s toys I went with what was available:  a broken crayon.  Using medical adhesive I  taped it underneath the middle knuckle of the m finger.

Happily, with the assistance of the crayon splint, I was able to participate in music again. I began working with a duet partner who had such good manners she never questioned the taped finger until a few weeks before she moved. Eventually, at the drug store, I found finger splints and finger wraps to hold the splint in place.   I considered using the wrap all the time without the splint to keep the finger engaged, but it was too uncomfortable.  By using the splint and moving my whole hand and arm in large arcs to play as recommended by Leisner I was able to play some things reasonably well again.  Still, there were limits to what I could do coupled with significant time constraints.  I took on a few more students, continuing to recall how much I enjoyed teaching and talking about music.  Looking at my repertoire again and all guitar repertoire in general was humbling.  Admittedly, with the small amount of time I had I was more interested in playing anything I could rather doing careful study to overcome the issue.  Perhaps it was not the wisest approach, but after having not played for so long I just wanted to enjoy the music, the vibrations of the guitar, with the limited amount of time available to me.

 *     *     *

This post brings me to the present.  I’m trying some new things, the child is in school, I’m getting in some regular practice, and a more disciplined approach.  I will write about this all shortly and I intend to make videos of how my hand looks now with focal dystonia and chart my progress.  I’m hopeful.

Merely considering the above title and ultimately writing it is like taking a blow to the stomach.  Even seven years later.  Inconceivable.

In early 2004 I learned at last what focal dystonia was via the internet.  Giving this personal disaster a name was comforting, even empowering.  However, there was no available knowledge on how to repair the damage or prevent the condition from escalating further.  In fact, the prognosis was dismal.  No known cure.

Who could accept that?  I continued to search for the magic button, the one trick which would return my playing back to what it once was.

In attempting to isolate the problem I became obsessively concerned with any type of repetitive motion pertaining to my right hand.  I oscillated between not using my right hand at all to using the m finger exclusively.  In our pizzeria where I rolled dough in the morning I changed my technique and started rolling dough with only the left hand.  I  tried carrying heavy pans and dough trays differently.  I confused a neurological disorder affecting specific fingers with carpel tunnel syndrome which is aggravated by stress on the tendons in the wrist and hand.  Additionally, with many hours of accounting and bookkeeping to do, I worried about excessive use of a calculator and in this case would only use the m finger.  Futile.

On the guitar I considered not using the least functioning finger, m, at all, and thought to replace it with the mostly unused pinky finger.  I discovered the method book, Right Hand Studies for Five Fingers, by Charles Postlewate.  I added many five finger exercises, wondering if working the pinky finger would awaken the nerve signals to the brain and rebalance my hand.  I communicated with Mr. Postlewate by email.  He was quite encouraging and had heard from another woman with focal dystonia who also felt that his exercises developing the pinky finger were beneficial.  While I find it advantageous for a guitarist to develop the entire hand including the pinky, I hadn’t experienced any improvement in my problem that could cross over to regular playing.  Perhaps I didn’t give it enough time.

Despite personal problems life continues unabated, insisting that we focus on matters unrelated to playing guitar. By the end of the year my husband and I welcomed a lovely, little daughter and subsequently I cut out playing almost entirely.  I had reached a point in which I just didn’t know what I could to do to improve my hand.  Nothing was helpful in any significant way.  Furthermore, I was concerned that what was not improving my condition could be harming it.  As sad and difficult as it was not to play I was so consumed with the new tiny baby, that sooner than I could have imagined, the guitar and focal dystonia became a distant nagging ache.

Other than two weddings for cousins (who could say no?) and a few previously scheduled gigs, I didn’t play at all.  Indeed I endured those isolated performances with an increasingly clenched right hand and an overwhelming sense of loss and frustration.

Amazingly, it seems, I had quit.  Quit playing guitar.  The thought would have been unfathomable to me if it hadn’t happened so gradually, so insidiously.

And yet an ember remained in my heart that refused to extinguish completely.

Be prepared — this post is destined to be awfully dull reading and a bit too long.  I’ve decided to tell my story in its mind-numbing, tedious entirety.  I’m doing it out of acknowledgement and sympathy for other sufferers and all the crazy things they have thought and tried.  And I’m doing it for anyone who is currently experiencing similar difficulties with the intent that they will recognize more quickly the symptoms of focal dystonia and not waste ten sad years wondering what the hell is going on with their hand!

So, back to the story:

I still didn’t know what was causing my problem so I pushed every technical button possible with the hope of finding that one particular exercise which had alluded me, and once discovered would steer me back to the path of recovery.  I began to pursue more extreme measures to correct my difficulties.  I used medical adhesive tape to tape my fingers together (m and a, or i and m).  I thought I could retrain my fingers to stay in a nice relaxed curve, thus preventing the m finger from curling in so radically. There seemed to be some immediate progress, which didn’t last and ultimately, my control was worse than ever.

Finding that slow practice made no difference I began to work loudly and quickly without a metronome – speed bursts. I emphasized keeping the thumb outside.  Since m was not working properly, my hand bounced to compensate (a problem I’d never had before).  To prevent the hand from bouncing I tried to keep it steady by working on tremolo (the flamenco version, starting with i rather than a, ex: piamipiami).  My only reason for trying the flamenco tremolo was to trick my hand into behaving by changing typical practice techniques.  As I write this, it doesn’t make a bit of sense, but at the time….oh, well.

And another misguided experiment….I tried holding the pinky into palm, which forced my other fingers outward.  The intention of this absurd idea was to prevent the m from curling in.  Once again I saw immediate improvement, which then it worsened.  Eventually, I cut out playing pieces all together, reducing my work to only exercises:  scales, arpeggios, tremolo.

Of course, I know now that the work I was doing – specifically, repetitive exercises – was exasperating the problem.  Tenfold.

I was at my wit’s end.  My beloved guitar.  The thing I loved most, what I had worked at since I was 13, what I majored in, what I taught, what was supposed to be my career, had slipped away and I had no explanation for it.  I’d had no accident.  The only kind of musician’s repetitive stress injuries I had heard of was carpel tunnel syndrome and tendonitis.  I knew I wasn’t experiencing either of those maladies.  I had no pain.  The only way I could describe the experience was that it seemed like I had had a stroke isolated to one hand.

By Jan 2004 (almost 3 years after the symptoms began) I decided to check the internet to see if it was indeed possible to have some sort of isolated stroke. This idea sounds bizarre now, even to me, but it was the only way I could think of to describe the problem. I searched “musician’s injuries”.  Page after page of carpel tunnel and tendonitis-related sites popped up before I finally discovered focal dystonia.  I had never heard of it.   But, at last!  A condition that seemed to describe what I was experiencing.  However, the information was minimal, at best.  Most sites focused on other dystonias  – focal dystonia in musicians was a footnote.  Certainly no cure was mentioned.

Eventually, I discovered  information about guitarist, David Leisner, and how he recovered on his own accord by his own method.  Unfortunately, there was very little information on how he did it (which is no longer true – just click on his name!).  I emailed him immediately.  The only way he knew to help at that time was by teaching his physical therapy/practice technique in person.  Well, living in Colorado with a family and a new business and very little money, made a week in NYC with lessons and hotel and air unlikely.

Later that year I read a descriptive article about focal dystonia which discussed the connection of the nerves in the fingers to the brain. After many years of repetitive movement the nerves slowly rewire themselves, connecting together and combining functions to form one large superfinger. The brain thinks it is helping by making all your fingers function as one, rather than making a lot of tiny individual strokes.  This idea made so much sense to me. It explained why my focal dystonia started to develop when my technique was at its most efficient and my playing had reached its peak.  It also explained how my playing worsened gradually, imperceptibly, at first.

This article was encouraging!  If the nerves could train themselves to make my fingers function as one, couldn’t they be retrained to function separately?  The question remained:  how was I to make that happen?  And could I?

Famous musicians with Focal Dystonia

The following is by no means a comprehensive list of famous musicians with focal dystonia.  For the most part I stick with classical guitarists in keeping with who I assume is the primary audience of this blog.  However, when a musician offers important information regarding a cure or is extremely renowned I include them also.  Additionally, I prefer to list musicians who have a website with a page devoted to focal dystonia.  With that said I welcome comments and information about other musicians with focal dystonia so that we may all learn.

David Leisner, classical guitarist.  Leisner’s trials have been discussed extensively and he has had excellent results with his own method.  See the Guitar Review article, Curing Focal Dystonia or How to Play the Guitar with Large Muscles.

Badi Assad, Brazilian guitarist, singer, and songwriter and her experience with focal dystonia.

Liona Boyd, classical guitarist.  She writes about her experience in her biography.

Leon Fleisher, pianist.  He was able to cure his focal dystonia through botox and rolfing.

Glenn Gould, pianist.  Although never diagnosed with focal dystonia, his biographer, Kevin Bazzana relates an article by Frank Wilson who thought that evidence in a late video and written references indicate he may have started displaying the signs of focal dystonia!

March 2001:  It all began while I was working on the Manuel de Falla Seven Spanish songs for voice and guitar for a concert, a very challenging set of pieces that require a fast, strong arpeggio.  I noticed something was seriously wrong  – a significant decline in my abilities.  I just couldn’t play a “pia” arpeggio at speed or evenly.

The problem probably became noticeable to me at least three months earlier.  At that time I had a regular weekly three-hour gig at a wine bar and was really enjoying it.  I found I had reached a kind of plateau in my playing where I was able to learn pieces more quickly and because I had a weekly venue I was able to get them up to performance level fairly rapidly.  That year was the most fun playing and performing I’d ever had.  And then I started to notice a slight change – small inconsistancies and irregularities in my playing.  Mistakes.  Missed strings.  I decided to quit the wine bar gig, but kept other less regular engagements (parties, weddings, etc).  I thought perhaps the type of practicing I had been doing had become non-productive.  I was burning through a lot of new music and getting away from slow technical practice.  So I returned to the slow practice of everything, especially the tremolo, which before had been one of my most shining techniques and now had become uneven. In fact, I couldn’t maintain it  at all.  In all my playing I was missing strings because once a finger played it stayed curled under, after which I worked hard to force it back into its basic position.  After noticing and trying to solve the problems of inaccuracy and lack of control, I started to lose speed, as well.

Not aware of any improvement I cut out practice of all music except those pieces which I had intended for a CD planned almost a year before (if only I had made that CD six months earlier — but that sounds too much like the big one that got away!)  I focused on scales, arpeggios and tremolo, convinced that if I could conquer those, everything else would fall into place.  I was making every mistake in the book to insure that my technique would continue to decline rapidly.

I know now that the main problem with my hand lies with the ‘m’ finger, but at that stage I was trying so hard to enforce a good position that the whole hand cramped up:  the thumb under, the ring and middle finger curling towards the palm, forcing the index and pinky to stick out further.  A complete and unholy mess!

This is when I started my own crazy experimental therapies.  I still had no idea what was going on with my right hand and I was beyond frustrated.  However, I didn’t realize the consequences of continued repetition.  As a professional musician one becomes so well-trained that giving up or slowing down when there are problems is unthinkable.  The tendency is to hunker down and work harder.  After all, that’s what has yielded results before.

In the next post, I’ll discuss my invented experiments to try to improve technique (if nothing else, you’ll see at least I was not lacking in creativity!), and finally discovering that I had Focal Dystonia.

Focal dystonia in musicians is an acquired neurological problem that makes one or more fingers curl under towards the palm uncontrollably, and once curled the fingers are extremely difficult to uncurl while playing. I figured out I had focal dystonia about 6 years ago, however I had been experiencing the problems associated with it for at least three years prior to that.

In this blog I intend to discuss how my playing erroded, slowly at first and then rapidly, long before I learned what was the cause. I will discuss the many techniques I have tried in order to overcome focal dystonia, the research I’ve done, what I’m doing now, and what, if any progress I have had.