Pulse
Changing His Tune
Guitarist Billy McLaughlin conquered focal dystonia by changing the way he plays. Now he's raising awareness of this condition.
Billy McLaughlin has a story to tell, and he wants to make sure everyone he encounters hears it. Even before taking the stage at the Guthrie Theater, where he performed in front of a full house for the Society for the Arts in Healthcare’s annual conference in April, the 47-year-old guitarist brings up a digital video recording that chronicles his struggle with focal dystonia. It tells how he went from playing 1,700-plus performances between 1988 and 1999 to just 14 during the next seven years. How prior to his diagnosis in 2001 he lost an international recording contract, his marriage, his income, and his home. How focal dystonia stole not only his livelihood but also his passion for music. And how, after years of frustration, he finally got both of them back.
Focal dystonia, a progressive neurological condition marked by tightness and involuntary contraction of muscles in the wrist, neck, fingers, arms, and other parts of the body used repetitively, is not a rare phenomenon among musicians. Although no formal figures are available, researchers estimate that between 5 percent and 10 percent of musicians may experience some degree of focal dystonia, says Jennine Speier, M.D., a physical medicine and rehabilitation physician and medical director of the Performing Arts Clinic at Abbott Northwestern Hospital’s Sister Kenny Rehabilitation Institute in Minneapolis. Speier has treated McLaughlin and a number of other musicians who have the condition. Although no one yet knows what causes focal dystonia, the incidence among people who are not musicians is lower, Speier says, adding that she has been hearing anecdotally about more cases in the general population and suspects they may be related to use of computers and related technology.
Currently, there is no cure for focal dystonia. But it is being treated with botox injections, oral medications such as baclofen or anticholinergic triphenyl hexidine, and biofeedback therapy, which involves retraining the muscles to respond differently. In all, these treatments are successful in 30 percent to 50 percent of cases, says Jawad A. Bajwa, M.D., a neurologist who specializes in movement disorders and medical director of the Capistrant Center for Parkinson’s Disease and Movement Disorders at Bethesda Hospital in St. Paul.
Diagnosis Delayed, Treatment Denied
Physicians who work with dystonia patients say that correctly identifying the condition is a challenge. Bajwa, who specializes in diagnosing and managing cases of focal and other types of dystonia, says the condition is often misdiagnosed, misunderstood, or both. “When I see a patient, it’s either because there’s a suspicion of abnormal involuntary movements or spasms that have not yet been diagnosed or it’s mere luck that the person has wound up in my office and I can say, ‘You have focal dystonia, and I can help you,’” he says. “There are people who are really dystonic and never got a diagnosis, and there are people who are labeled dystonic who are taken on a path that’s not healthy for them—through medication use or therapy for a condition they don’t have.”
In McLaughlin’s case, lack of diagnosis was the issue. He first noticed a problem in the late 1990s after recording his second album. While playing, his hand muscles would spasm, causing his fingers to curl. “It literally felt like someone had rubber bands that were hooked to the muscles in my hand, and they were pulling them intermittently,” he recalls. “Without realizing it, I was refingering certain passages to compensate for the cramping and tightness.”
Doctors first suspected he had carpel tunnel syndrome; but X-rays showed no problems with his hands or wrists. McLaughlin was then told it was nothing. “The implication was that it was psychological because there wasn’t an apparent orthopedic problem,” he says.
Speier has heard similar stories from other patients. “Pain is not associated with this condition, and oftentimes, when you are looking for a source—an injury—you cannot find one,” she says.
Speier says focal dystonia can be diagnosed in musicians by neurological exam, watching the person play their instrument, and doing biofeedback or an EMG of the suspected muscle groups while the person is playing. “You have to look at how they practice,” she says. “People who have focal dystonia may be playing rapid passages repeatedly with little breaks, their affected hand is usually the one that does the most work, and their position on the instrument may look awkward because they are trying to compensate for the inability to move that muscle properly.”
Speier, in fact, was the one to diagnose McLaughlin. Doctors at Mayo Clinic confirmed the diagnosis. McLaughlin initially tried biofeedback as a treatment. When that didn’t work, he traveled to the National Institutes of Health in Bethesda, Maryland, for a series of botox injections, which at the time was an experimental therapy for focal dystonia. When that proved unsuccessful, he knew he had to reinvent himself. “I woke up at that point and decided to recreate the way I play guitar, to recreate my skill set,” he explains. McLaughlin was already known for a unique style of playing—he held his guitar with the neck vertical to the ground and used fingers on both hands to pick at the strings like a harp or cello. Now instead of doing most of the picking with his right hand, he does most with his left. He also began writing compositions that accommodate his condition.
In order to push himself to perfect his new technique, he booked a concert in Detroit in November 2006, 18 months after he began using it.“I was worried how I would handle the performance, but the standing ovation showed me I did well enough.” Since then, McLaughlin has re-established himself as a virtuoso acoustic guitarist. He released his debut CD as a left-handed guitarist, “Into the Light,” in 2008 and performed 100 shows in 2009. He hopes to do 150 this year and thus far has shows booked abroad in China, India, the Philippines, and Canada. In addition, an award-winning documentary about his life, “Changing Keys,” has aired on PBS stations.
“What makes Billy’s case different is not only that he was enthusiastic about seeking a solution but that he was able to overcome the many challenges associated with this condition,” says Speier, who explains that only 25 percent of musicians diagnosed with dystonia return to performance-level play. “Being a composer helps a bit, too; so much of what he performs is his own music, and that gives him a little bit of freedom.”
Building Awareness and Support
In addition to working as a full-time musician again, McLaughlin has become an advocate for focal dystonia awareness. In April, he received the American Academy of Neurology’s 2010 Public Leadership in Neurology award. The following month, he went to Washington, D.C., to knock on the doors of members of Congress along with other members of the Dystonia Advocacy Network, a grassroots organization that works to advance legislation and public policies that support people with dystonia. “If we can’t cure the disease itself, we can cure the ignorance and lack of awareness about it,” he says. “And that’s something we can do right this minute.”
McLaughlin also has met with and mentored hundreds of musicians who have been diagnosed with the condition. He is involved with the Chicago-based Dystonia Medical Research Foundation, which recently named him an ambassador for dystonia awareness, and he is helping launch Minnesota’s first formal support group for persons with dystonia, which will be administered through the Capistrant Center at Bethesda Hospital. The support group will start meeting in September. In addition, he performs at events such as the Society for the Arts in Healthcare conference in order to share his story.
When McLaughlin was first diagnosed with focal dystonia, he was warned that it might one day affect his left hand in addition to his right. “I was told that if there’s anything that I want to do in my career, with my music, I should do it now,” he recalls. McLaughlin has taken that advice to heart. “I’ve stopped trying to fix what was broken and instead focus on what still works,” he says. —Jeanne Mettner