Lesley Tessler's life began to change when she got out of bed one morning in early November 2016. “I woke up and I felt lightheaded, and my gait was off balance,” says the 74-year-old retired teacher from Oakland, NJ. “That feeling of lightheadedness hasn't gone away since.”
Several months later, after she'd had an MRI and other tests and been screened for various conditions, including Parkinson's, stroke, and lupus, Tessler was diagnosed with cerebellar ataxia—a disorder caused by damage to the cerebellum, a part of the brain that controls movement, posture, balance, and coordination.
Sheng-Han Kuo, MD, a movement disorders specialist at the Neurological Institute of New York at Columbia University Irving Medical Center, diagnosed her condition back then. More recently, Dr. Kuo shared some good news. He was starting an organization called Broadway for Ataxia that would allow her to take private classes in singing, acting, and even dancing with theater professionals—classes that might offer a therapeutic benefit.
Dr. Kuo thought of Broadway performers because he lives just a couple of blocks from Times Square and knew that many were unemployed because of the pandemic. He wondered if dancers and actors—whose work depends on rhythm and vocalization— could help patients with ataxia who typically have problems with balance, coordination, walking, and speech. “A feature of ataxia is a lack of rhythm,” Dr. Kuo says. “Movement and walking are irregular.” Meanwhile, he says, “people in theater have the most movement control and the best rhythm control.”
“We don't have a lot of effective therapy for patients,” explains Dr. Kuo, who is director of the Initiative for Columbia Ataxia and Tremor, a multidisciplinary research effort aimed at developing treatments. (Broadway for Ataxia operates separately from Columbia.) “Physical therapy is often prescribed, but patients tell me it's not interesting or fun.” Some colleagues at Columbia helped Dr. Kuo launch the program: Chi-Ying (Roy) Lin, MD, MPH, who was doing his movement disorders fellowship training under Dr. Kuo, and Nadia Amokrane, who oversees Columbia's clinical trials on potential FDA-approved medications for ataxia. Dr. Kuo's friend Barry Levy, who'd worked in finance and start-up ventures, provided funding expertise and also co-founded the group. “We were trying to think of a holistic approach to treating people with ataxia,” says Levy, who is executive director.
The six-week pilot program started in January 2021, with five patients working individually via videoconference once or twice a week with professional singers, actors, or dancers who were recruited through advertisements in theater industry media. Now there are more than twice that number of participants. Many others have logged in to one of the organization's monthly group sessions, which are publicized on its website. and Facebook page and conducted over Zoom. As pandemic restrictions have lifted, the organization is considering in-person sessions.
To pay for their classes, patients are asked to raise money from friends, colleagues, and local businesses to cover $50 of each session's $100 cost; the other half is matched by a “major anonymous donor,” Dr. Kuo says.
“There's so much we don't know about [how] music and theater can help with a neurologic disorder,” says Dr. Kuo. “In my own research, we've been using different neuromodulation techniques to stimulate areas of the brain involved with rhythm.” But for the most part, the impact of theatrical arts–based therapy for people with neurologic conditions “hasn't been tested,” Dr. Kuo says. “So we are observing what the impact might be from this program.” In the future, it could be expanded for people with Parkinson's disease, dystonia, tremor, “and maybe eventually for cognitive disease,” says Dr. Kuo.
Broadway for Ataxia's instructors guide their clients in learning songs, choreography, and dialogue scenes from famous Broadway musicals like The Sound of Music, Cabaret, and Wicked. Depending on a client's needs and abilities, each 60-minute class focuses on singing, acting, dancing, or movement. It always begins with a vocal or physical warm-up and typically includes breath work, mindfulness techniques, yoga-type stretching, and exercises for core strength. Every program also involves some improvisation, when the client and trainer do not follow a play's script or score, or the planned dance steps.
“Many participants report that they really love the improvised section. They feel it enhances their mind and body coordination,” says Dr. Lin, who is now assistant professor of neurology at Baylor College of Medicine in Houston.
The instructors—who have performed in New York and regional theaters, national tours of musicals, and TV shows and movies—receive training in dance therapy, speech pathology, and physical therapy from respective specialists via Zoom. With the clients, “we're encouraged to focus on our [performing] specialty and just sort of explore what happens,” says Alexa Renée, an instructor who had been entertaining on a cruise ship for a year and a half prior to the pandemic. “The workshops emphasize fun; they aren't goal-oriented in specific ways.”
For Tessler, Broadway for Ataxia brought some cheer during a pandemic that was particularly difficult for her. In April 2020 she was hospitalized for a week with COVID-19, and its long-term effect has been to exacerbate her ataxia symptoms. “My balance and lightheadedness are worse,” she says.
Her condition hasn't dampened her enthusiasm, though. “Broadway for Ataxia has been wonderful,” Tessler says. It helps her to stay active and keep her voice strong. The program even offers some emotional relief. During one session, she and the instructor “got to talking about my feelings toward this whole disease, and we talked for about 10 minutes,” Tessler says. “I told her afterward that was just as important as anything else for me.”
Tessler is also gratified to see the instructors learning more about ataxia, since it isn't widely familiar to the general public. “It's a disease people really don't know about,” says Tessler.
Barbara Tinari, a retired kindergarten teacher in Florham Park, NJ, was diagnosed with ataxia in 2014. She and her husband, Frank, had taken up ballroom dancing about five years earlier, until “she began having problems making turns,” recalls Frank. “She would get dizzy and go off-kilter.” In the past year, Barbara transitioned from a walker to a wheelchair, and her hand tremor has worsened. Broadway for Ataxia, however, has been a bright spot. The traditional speech and physical therapy she's done in the past “is more like work,” Barbara, 75, says. She also appreciates that Broadway for Ataxia is something she and Frank can do together. Her husband attends every session with her, acting opposite her in scenes or duetting with her on songs.
“I look forward to the sessions,” says Tessler, “because there's no pressure, there's no right or wrong.” While Tessler can't say her symptoms have improved since joining the program, “it keeps me moving, and it keeps me from regressing,” she says, adding “It's a degenerative disease. I just want to hold it at bay, so it doesn't get worse.”
The trainers had similar expectations, according to Renée. “When we started this program, we were told not to look for huge changes because it's a degenerative condition. The most that a client can usually hope for is plateauing,” she says. “And that's what a lot of the clients had expressed to us from their experience in physical and speech therapy. But I am seeing way more changes than I expected to.” The speech of one client, for example, was hard to understand at first, but “around the four- or five-week mark, I noticed I never had to ask her to repeat herself. I could understand every single word,” Renée says.
Working with the organization has been beneficial to instructors as well as participants. “This [has been an] opportunity to create positive change, heal with our art, and create a space for calm and peace and joy,” says Renée.
