BY LISA COLLIER COOL

Vincent Van Gogh ranks as one of the most brilliantand prolificartists of all time, painting hundreds of masterpieces ablaze with vivid colors, bold brushstrokes, and swirling coronas. He also experienced seizures, hallucinations, and other symptoms throughout his short life that many historians, his own doctors, and Van Gogh himself attributed to a neurologic disease: epilepsy.

Other famous artists, including Willem de Kooning, who developed Alzheimer's disease, created masterful works of enduring genius while living with neurologic conditions. More recently, Chuck Close, an American painter and photographer, has talked about how his various neurologic conditions both enhance and limit his artistic output (bit.ly/NN-ChuckClose).

We spoke with John McNeil, a jazz trumpeter, to find out how a diagnosis of Charcot-Marie-Tooth disease in childhood influenced his career.

A trumpet player and bandleader who has performed with many of the greats of the music world and recorded more than a dozen critically acclaimed albums, John McNeil has been called "one of the best improvisers working in jazz" by Ben Ratliff, music critic for the New York Times. What makes his success particularly remarkable is that McNeil, 69, has a neurologic disorder that affects his breathing, facial muscles, and finger control, all of which are essential for his art.

Born Different

McNeil was born with Charcot-Marie-Tooth disease (CMT), an inherited condition that affects about one in 2,500 Americans. Named after the three doctors who discovered it, CMT damages peripheral nerves, disrupting signals from the brain to muscles, much like static on a phone line. Over time, this causes muscles to weaken and start to shrink, says Stephan Zchner, MD, PhD, professor of human genetics and neurology, chair of the department of human genetics, and co-director of the John P. Hussman Institute for Human Genomics at University of Miami Health System. "Often CMT symptoms begin in the feet, which have the longest nerves, while the hands and other parts of the body can be affected later in the disease."

In McNeil's case, the symptoms started in childhood. "By age 3, I had trouble with motor skills, and I was falling a lot because my feet had started to deform from the disease," he recalls. This common early symptom often causes people to develop very high arches that impair walking because of weakness in foot muscles. "By the time I was 11, my spine started to get twisted, and I had to wear braces on my legs and body," he adds.

A Sudden Inspiration

When he was 10, McNeil saw a TV show that sparked a lifelong passion. "I watched Louis Armstrong playing the trumpet on a variety show and thought, 'Man, that looks like fun!' I bugged my parents to get me a trumpet, and I'm pretty sure the only reason they agreed was that they'd been told my disease was progressing so fast I might not live past age 13 or 14. Not only did they get me a trumpet, but they also gave me a bunch of Louis Armstrong records that I used to teach myself how to play."

CMT is rarely fatal, says Dr. Zchner. "There are a few extreme cases when patients die at an early age while other people have very mild problems that may not start until they are middle-aged. There are more than 100 subtypes of CMT, and it's very difficult to predict how an individual patient will be affected except that people typically start with a few symptoms and over time, develop more."

Remission

At first, muscle and coordination problems made playing the trumpet difficult for McNeil, but he persisted. Then at age 16, he had a dramatic health turnaround. "The disease suddenly stopped progressing. I worked out every day, and my strength exploded. Within a year, I gained nearly 50 pounds of muscle and felt great." Soon the Yreka, CA, native had more good news to trumpet. He'd become so skilled at playing his instrument that he was invited to play first chair in the Northern California All-Star Concert Band. By the time he graduated from high school, he was playing jazz trumpet professionally.

Relapse

In the 1970s, after getting a degree in music and playing professionally around the country, he moved to New York City and began working as a freelance musician. He also began playing jazz and eventually started recording albums and touring internationally with his band. Then his disease flared up. "I started stumbling, sometimes with no warning, and dropping things. I couldn't get enough air out. Once, in the middle of recording a live album, I had trouble getting air out. I played so poorly that I begged the record company not to release it."

After several years and through sheer determination, he staged a comeback, only to be hit with an even more devastating setback. "I got my band on the road and then this disease really whacked me. I lost control of my right hand and couldn't move my fingers well enough to play the trumpet." Refusing to give up, McNeil spent the next yearand more than 1,000 hours of practiceteaching himself to play left-handed, then formed a new band called Lefty.

A Clinical Trial

However, he continued to struggle with CMT symptoms and, despite daily workouts at the gym, became increasingly frail and disabled. "I was having so much trouble walking that the doctor said I needed a wheelchair. I said no and looked around for somethinganythingthat might help." He enrolled in a small clinical study of human growth hormone, a drug approved by the US Food and Drug Administration (FDA) for certain medical conditions, but not CMT. "Within three months, I threw my cane away," McNeil says.

He was eventually able to resume playing the trumpet right-handed, aided by custom finger braces. "When I was playing left-handed, my style and musical phrasing became more economical since I couldn't rely on music memory and was learning to play all over again. When I switched back to playing right-handed, I found I carried some of this increased clarity with memaking me a much better player," he recalls. "The improvement was amazing!"

"It's extremely unusual for someone with CMT to regain any lost function," says Dr. Zchner. "However, since there's no FDA-approved treatment for this disease, if patients find any therapy they consider helpful and it isn't causing any major side effects, then I wouldn't tell them to stop using it. Exercise, such as swimming or biking, is generally advised, not to reverse the disease, but to make the body more resilient to the loss of muscular strength." Patients with CMT should also ask their neurologists about clinical trials of new treatments, he adds. "Some very promising research programs from the Charcot-Marie-Tooth Association (cmtausa.org) are expected to lead to clinical trials in the near future."

Winning Battle

Although CMT has repeatedly interrupted McNeil's career, often for years at a time, and he continues to battle a wide range of complications, including joint problems, lung infections, and chronic shortness of breath, he's now in a band called Hush Point and performs regularly at New York City clubs with a group of much younger musicians. "Without CMT, I wouldn't be the musician I am today," he says.

"Because I've had to work so hard on my body and concentration to continue playing at a professional level, I find I've become more perceptive musically: I have to completely see, feel, and hear what each note is going to sound like before I play it. While it's a continuing battle to stay at this level, I'm determined to keep fighting this disease. Every time I go out on stage, pick up my trumpet, and start improvising, I've won."

To learn more about John McNeil and his music, go to McNeilJazz.com. To listen to a clip of McNeil playing a traditional Scottish folk song called "The Water Is Wide," by an unknown composer, click on the box below. To order the full CD, Sleep Won't Come, go tobit.ly/SleepWontCome. For interviews of artists with other neurologic conditions, go to bit.ly/NN-TheArtOfIllness.

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