(New York, N.Y. – April 9, 2014) In 2003, Gohei Nishikawa, a rising young classical pianist, was diagnosed with dystonia, a neurological movement disorder that causes painful and uncontrollable muscle spasms. He stopped performing and thought about ending his life, but then realized that he was better off trying to get better and helping others like himself. Although he still does not have the full use of his hands he has given comeback performances in New York, Rome, Vancouver and Tokyo.
Nishikawa is a strong advocate for research money and supports the goals of Dystonia Advocacy Day which took place April 8-9 in Washington D.C. During this time, participants received updates on dystonia research from leading investigators, comprehensive advocacy training, and the opportunity to network with other dystonia-affected individuals from across the country. Dystonia Advocacy Day culminates with a trip to Capitol Hill so that participants can meet with the offices of their Members of Congress and urge their support on key legislative issues.
The involuntary muscle contractions caused by dystonia cause repetitive, often twisting movements and awkward, irregular postures. It can affect the hands, feet, neck or other parts of the body. It may be genetic in origin or appear spontaneously, and dozens of diseases and conditions include dystonia as a major symptom. While not widely known, dystonia is the third most common movement disorder, after essential tremor and Parkinson’s disease. It affects as many as 500,000 people in the United States, one-third of them are children. There are very limited treatment options and no known cure.
Nishikawa didn't start playing piano until he was 15. He supported himself by working in a department store and factory and gave occasional concerts. His boss at the factory encouraged him to enter the Bradshaw & Buono International Piano Competition. Based on his performance David Bradshaw invited him to study piano in New York. A short time later, Nishikawa made his debut at Lincoln Center's Alice Tully Hall and performed at Carnegie Hall/Weill Recital Hall, which he had dreamed of playing as a little boy. But his Cinderella-like tale came to a crashing end when he was diagnosed with dystonia and lost the ability to play the piano.
"As months went by, my career seemed to be going well, but I gradually started to feel stiffness in my left hand. Then the fingers of my left hand started to curl into the palm against my will only while I played the piano," Nishikawa said. "I tried massage, acupuncture, chiropractic, and anything I could possibly think of. But it got worse and worse. And my right hand became affected as well. Within a couple years, I couldn't even play ‘Twinkle Twinkle Little Star’."
Nishikawa went back to Japan. "My doctor told me I would never be able to play the piano as well as I used to for the rest of my life." I was depressed and thought about ending my life. But I was determined to play the piano again and went back to stay with the Bradshaw family who told him never to give up hope."
While he underwent rehab, Nishikawa realized that he could create his own way to play the piano without utilizing all his fingers. "It was not easy for me to forget everything that I had gained from practicing day and night everyday for almost two decades. But when I broke the routine, I was able to move on."
In 2008, Nishikawa made his comeback at the Bradshaw and Buono International music festival in Tolentino, Italy in performing in a 1,000 year old cathedral in Italy. The following year he played at Steinway Hall in New York City and in Tokyo. He took in the international piano competition for disabilities held in Vancouver in 2010 where he placed fourth out of 138 competitors. Nishikawa also gave a comeback concert at Carnegie Hall/Weill Recital Hall in 2010 where he received a standing ovation.
"I will never forget the view from the stage, Nishikawa said. "While receiving the standing ovation I recalled the moment that I wanted to end my life and thought how glad I was that I didn't give up on my life."
In 2012, Bonnie Strauss, president and founder, The Bachmann-Strauss Dystonia and Parkinson Foundation who also has dystonia, arranged for Nishikawa to perform at Gracie Mansion, home to the Mayor of New York City. Nishikawa told those in attendance "Today, so many people are suffering from dystonia. Although there is no certain cure for very patient, my message is don't give up to remain positive and help raise funds for research.”
Gohei Nishikawa's music has been uploaded onto YouTube. You can see his performance for the US/Japan Leadership Program in Tokyo in 2014 at http://m.youtube.com/watch?v=ykm4N9wiVBs&feature=youtu.be
You can also see a piece that was composed for him by Japanese composer Yuri Matsufuji at http://m.youtube.com/watch?v=4lxI1mofy_A
For more information on the events that will take place April 8th and 9th in Washington please go to the events page of the Dystonia Advocacy Network at http://dystonia-advocacy.org/events/
About the Bachmann-Strauss Dystonia and Parkinson Foundation
The Bachmann-Strauss Dystonia & Parkinson Foundation is an independent, nonprofit, 501(c)(3) organization that was established in 1995 by Louis Bachmann (1916-2000) and Bonnie Strauss in order to find better treatments and cures for the movement disorders dystonia and Parkinson’s disease, and to provide medical and patient information. Key among its efforts, the Foundation funds scientific and clinical research and helps raise awareness of dystonia and Parkinson’s disease among the general public and the medical community.
Since its1995 founding by Bonnie Strauss, The Bachmann-Strauss Dystonia and Parkinson Foundation has given $16 million to seed 233 research projects. Along with research projects, the Foundation established four Dystonia & Parkinson’s Disease Centers of Excellence around the U.S. The Centers are located at Mount Sinai Beth Israel Medical Center, University of Alabama at Birmingham, University of California, San Francisco, and University of Florida. The scientists involved were able to leverage that funding to secure an additional $63.5 million from the National Institutes of Health. For more information please go to: www.dystonia-parkinson.org.