A testament to Dr. Joaquin Farias work in helping musicians overcome Focal Dystonia! Congratulations to Michelle Sung on overcoming Focal Hand Dystonia and for sharing her story below! Not only is it inspirational, but I cannot express how relieving it is to not feel alone in wanting to break the stigma surrounding the disorder and how truly important it is. She says, " Trust me, it takes a lifetime to get past someone suggesting you are crazy." Yes, and sadly those of us with the disorder end up hearing it most from our friends/colleagues, and teachers that we feel we can trust. It's quite devastating in the beginning stages not knowing where to go or who to talk to. I'm so happy to hear Michelle play again and will share her story/good news wherever I can!
Michelle says: It’s taken me almost two years to share a diagnosis that I’ve been struggling with. A few days ago, I gave my first performance since I was diagnosed with Focal Dystonia.
I woke up one day, unable to pick up or hold my flute, without my hands shaking and cramping. Within days, I was not able to fully control my hand movements anymore. Playing a scale or even simply holding my flute suddenly seemed impossible. I began seeing doctor after doctor, transferring from one specialist to another. Each doctor I saw gave me a different diagnosis. It ranged from them believing I was suffering from seizures to misdiagnosing me with Early Onset Parkinson’s disease. Some doctors that completely had no idea what was happening to me, blamed it on my mental health, suggesting that it was psychological, or “all in my head”. (Trust me, it takes a lifetime to get past someone suggesting you are crazy!) Finally, I was diagnosed by a neurologist with Focal Dystonia – a movement disorder, a deviation in my cerebellum/the motion control center in my brain. My doctors then suggested me to quit flute and pursue another non-performing career. I was told a cure was “not possible”. My most optimistic doctor said a full recovery would be a “miracle”.
For as long as I can remember, I introduced myself as a flutist and that was suddenly all destroyed by focal dystonia. Completely lost in life, I dropped out of grad school, struggled to keep in touch with my friends, and felt absolutely worthless. I didn’t talk to anyone about it, out of frustration that nobody would understand anyway, and out of fear of being judged. I didn’t want to be labelled with a brain disorder.
Focal dystonia is often misunderstood as an overuse injury but it is actually classified under neurological movement disorders. One neurologist once explained to me, that the same part of the brain affected in patients with Parkinson’s was damaged in my brain. It has nothing to do with tendinitis or a nerve injury. Neurons fire incorrectly and somehow mess up the wiring in the brain, as one loses the ability to control certain body movements. The cause is yet unknown, but studies have shown that physical trauma or shock to the brain can trigger focal dystonia.
These past two years went by in a flash, while at the same time seeming to have taken decades but I finally feel comfortable and confident enough to share my experience, in hopes to raise awareness. I am still in disbelief myself, but I am beyond happy to share that I have fully recovered from focal dystonia, despite the fact that doctors told me it was impossible. I am so grateful for all the people I have met along the way for not giving up on me, when all signs pointed me to do so. Special thanks to Alex Klein and Joaquin Farias. By being vocal about focal dystonia, I hope that it can start to break away from the stigma that it cannot be cured and more people can become comfortable to openly talk about this, or any other disorder, that is frowned upon. If you know of anyone that is suffering from this disorder, please send them my way. I would love to get in touch with them and share how I recovered.