Living with Focal Dystonia: Part 1 - time-line.
Updated: Jan 30, 2019
Hello! You’ve found the first ever Greg Fulton Music blog about Focal Dystonia. Thank you for your visit. Let’s jump right in to Focal Dystonia!
My history and experience with Focal Dystonia is extensive and there’s simply too much to cover in on or two posts. I think best place to start is with a basic time-line, so here we go!
2006: I entered my 13thyear as a professional musician, playing as a side musician in 3 bands, doing film score recording sessions, performing with the Seattle Symphony when needed and had steady work as a pit musician,
2007: First symptoms appear in the right hand fingers especially in the middle finger. Ignored them as anything serious. Kept practicing.
2008 - Spring: Symptoms harder to ignore as I prep for a gig with the Seattle Symphony. This is also the year the term Focal Dystonia entered my vocabulary.
2008 – Fall: Received official diagnosis from neurologist. This was a difficult time to say the least.
2009: Symptoms increase. Motor skill in right hand fingers is now without any control. Pain in the right arm increased due to working to overcome symptoms. I gave up playing 5-string banjo altogether.
2010: Total desperation and am struggling to play. FD has now affected keyboard playing and has jeopardized my career as a church musician as well. Sought the help of a hand therapist. Was not much help, not because of the therapist, but because of me - I was too freaked out, scared, angry and terrified. Starting to lose gigs and definitely losing hope. Had even turned down offers from SSO. Have not been called again since.
2011 - 75% of my playing abilities gone. I am only left with using a pick and even that skill was diminished. I did two recordings that year and it was a challenge to get through each session. Hanging on my a thread emotionally. Late in the year I started dropping picks – my last real skill had been finally taken over. Anxiety levels way up. Took some supplements to try and help. Made me sick. In 2010 I starting seeing a Rolfer, but could not afford it any more. Acupuncture helped my body but not the fd.
2011 - after struggling through two back to back theatre productions, I considered what it’d be like to cut of my middle finger. Seriously. I. Was. Desperate.
It’s import to remember that I also became a father in 2007. I was terrified of not being able to support her. Anxiety much?
2011 - reached out to a teacher I found on a Google search. He claimed to know a lot and had recovered from FD. Right. Ok. I had already reached out to other players who claimed to have recovered from FD. Since I never heard back from any of them I did not have high hopes. Yet he had still recovered from the one thing that nearly the entire medical world said had no cure. I emailed him all the same. Asked him (in a fit of terror) if amputation was a viable way of tricking the brain into not creating symptoms. His response (and I was quite surprised he responded the next day) was “NO! DON’T CUT OFF YOUR FINGER. Let’s talk!
A glimmer of hope. I met with Jerald via Skype and he was the first person to show familiarity with the symptoms and expressed confidence that it was curable. This was a huge turning point.
I will continue in the next post! It gets a little better from here...
Thank you for reading!