Have you ever heard of the disease dystonia? It is the third most common neurological disorder after tremors and Parkinson's disease. It is a movement disorder that causes the muscles to spasm and contract involuntarily. According to the Dystonia Medical Research Foundation, "Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part." More than 300,000 people are affected by the 13 forms of dystonia. Additionally, many diseases and other conditions list dystonia as one of their symptoms.
I learned about this disease through an accidental, or some might say chance, meeting with Billy McLaughlin. Billy is an outstanding and amazing guitarist and composer who for more than 20 years astounded audiences with his very complex and rhythmic music.
Billy is a Minnesota native who attended the University of Southern California where he learned about minimalist composers Phillip Glass and Steve Reich. According to his website bio, "Employing what would become his signature style of placing both hands on the fretboard, McLaughlin began composing for his first release using a technique of 'hammer-ons" and 'pull-offs" that create a harp-like effect on the acoustic guitar. This unusual approach led Billy to extensive national touring, earning multiple NACA Campus Entertainer awards. In 1995 McLaughlin signed a multi-album international contract with Virgin Records label Narada whose first release, Fingerdance, peaked at #7 on the Billboard charts. Hundreds of shows a year and another release deep into the contract with Narada, he began struggling with his hands -- something felt "off" and it was getting worse. Then one day, Billy realized he started missing notes during his concerts. These were songs he had played for years and knew very well. He figured he was not getting enough sleep, not getting enough exercise, needed to eat better or take more vitamins. However, even in doing all of these things his condition only worsened to the point where some who saw him in concert thought he was playing inebriated. In 2001, after two years of searching, Billy was finally diagnosed. He had focal dystonia.
When Billy was diagnosed with focal dystonia he knew, like many other musicians and individuals who use the same set of muscles in constant repetitive motion, it meant the end of his musical career. It seemed that the world would not hear music from Billy anymore. Then he did something truly remarkable. He took his guitar into his friend's store and asked him to restring it for a left handed player. Shocked and somewhat aghast, his friend did what was requested, thinking if anybody could teach themselves how to play the guitar using his opposite dominant hand, it would be Billy. And learn he did! The award winning documentary film Changing Keys: Billy McLaughlin and the Mysteries of Dystonia chronicles Billy's struggles with the disease and his amazing comeback.
In January 2007, Billy issued a limited release recording titled, Into the Light. Billy was back recording and releasing music but more so he knew he had to give back and make a difference. He became involved with the Dystonia Medical Research Foundation as their first Ambassador for Public Awareness. Because of his work in this area to increase awareness and make a difference, he received the 2010 International Leadership in Public Neurology Award. Past recipients of this award have included Paul Allen, Julie Andrews, Leon Fleisher and Michael J. Fox. Billy, as well as the others listed, have worked to make a difference in this area. Here are five recommendations and tips on things you can do that will Make A Difference:
1. Learn about Dystonia and Focal Dystonia by going to the Dystonia Medical Research Foundation website.
2. Watch the film, Changing Keys, then talk about it with others.
3. Do not let what an ailment does end what you love to do; work daily to find a way to do what you love!
4. Make a donation to a nonprofit organization working in the area neurological disorders; a simple search the Internet will start you in the right direction including the American Brain Coalition.
5. Volunteer your time to help those affected by a neurological disorder.
Bonus Tip: Host a screening of Changing Keys in your home or community to educate others!
Billy was diagnosed with focal dystonia in 2001, he also received the following fortune from a fortune cookie, "Many people fail because they quit too soon." He taped it to the dashboard in his car where it remains today and continues to follow the advice! Billy McLaughlin made a difference! What can you do to be M.A.D.?
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