It was a Friday afternoon, late fall, 2001. I was at work programming for Oracle and found that typing with my left hand would cause my right hand to move uncontrollably in a strange fashion. A day later my right hand started convulsing and it was still moving around on its own the following Monday. Frightening.
That morning I called my boss, my neurologist, and a workman’s comp lawyer; in that order. My boss was cool about it. Dr Charness, my neurologist at Brigham and Women’s Hospital, said he had heard of this, that crosstalk between the brain’s hemispheres can get tangled (not his words exactly) causing neural confusion. My lawyer told me to make sure I get my ‘story’ straight if I was going to go the workman’s comp route; never missed any work though. My first thought after these phone calls was that this is bad, however, I’ve been through worse. Knowing that I had been through worse earlier in life was actually somewhat consoling and probably kept me from panicking.
It started in the mid 90’s. I noticed a strange thing. I had trouble with handwriting, and sometime later found that when I typed, my hand would pull to the right and my thumb would rise uncontrollably. By 1998 or so, I could not even hold onto a pic. I was working fairly hard on guitar during the 90s, but found that the harder I worked, the worse my playing got. It got to a point where I could not even do simple riffs that I could do early on in my playing – like Sweet Home Alabama – and there was clumsiness in my right hand that I did not quite have a handle on. When finger picking, there was an unnatural tension causing me to have to force my fingers to move as though they were attached to an elastic band. When strumming, it felt like I was strumming my guitar underwater and the pic would simply fall out of my hand after less than a minute. I switched to finger picks and got aggressive about getting a proper diagnosis.
9/11 came a month early for me. Dr Charness, a neurologist at Brigham and Women’s hospital in Boston, who only works with musicians, diagnosed Focal Dystonia. His intern told me she knew the diagnosis as soon as I described my first symptom – difficulty maneuvering a pen. Then she told me not to panic and not to believe the stuff I find on the internet and that “there is hope”, which immediately caused me to go on the internet, panic and lose all hope :). One of the first things I read was that “If you have Focal Dystonia and it gets cured, then you did not have Focal Dystonia”. Ouch. There is currently no cure for this.
Why did the 2 other neurologists I met with not even know about Dystonia? All told, this diagnosis took me about 2-3 years which is the average amount of time for getting a proper Focal Dystonia diagnosis. Apparently the word is just not out. Hopefully this blog and others will help get the word out. (btw, the uncontrollable convulsing went away a few days later. I had been wearing a splint for a study and the movements stopped a few days after I removed it).
Focal Dystonia is a Parkinsons-like neurological condition that affects people in many occupations: musicians, typists, dental hygienists etc. It tends to get progressively worse until it bottoms out; then it will let up a bit. In my case, there is an unnaturally dominant muscle in my forearm that flexes seemingly on its own. When I strum, the brain instructs my wrist and thumb to pull up, causing me to drop the pick. Brain plasticity gone wrong.
I quit my band of ten years and stopped playing guitar as I did not want the condition to worsen and I guess I was out of sorts. Two years later, I started playing guitar again using a hemostat to hold the pick. I did a stint with Botox. It relieved some of the symptoms and made my forearm quite handsome :), but Botox tends to leak from the target muscle to other muscles in the forearm causing a general weakness, and the insurance company makes it extremely difficult to get these treatments; having to resubmit all paperwork for each treatment, then losing the faxes etc.
Even with the hemostat, my playing was simply not fluid; it was somewhat forced. It took pressure to get the job done and my accuracy was compromised. That said, I still felt fortunate to be able to play, never mind complete my album “Not My Job”. A professional flautist for the Boston Symphony Orchestra would probably have to retire. I am happy to report that since the fall 2015, I am holding the pick naturally – without the hemostat.
You see, a year ago, I turned my electric guitar upside down, reversed the nut, and restrung it for left-handed like Paul McCartney – the original Paul 🙂 – and it feels awesome. I am very pleased with my progress and for some reason, I believe playing left handed has loosened up my right hand a bit. My right handed playing has improved quite a bit over the last year as well. I see myself going back and forth between left and right handed playing because at this point, I enjoy both.