Genetics

For Dystonia Sufferers, New Film Hits a Nerve

By Claire Levenson

When she was 10, Miriam Kimmelman began to lose control of her body; it would twist into a variety of abnormal postures. The symptoms progressed fast. Before long, she could walk only backward. After seeing about 100 doctors in two years, she was diagnosed with dystonia, a neurological disorder that affects more than 300,000 Americans. Thanks to surgery, Kimmelman, now 58, is much improved. She was married (now widowed) and works as a rehabilitation counselor, but her whole body, including her breathing and facial muscles, can still behave irregularly.

When Kimmelman saw the new dystonia documentary “Twisted” last February, she felt as if she were watching her own story. The film follows the lives of three dystonia sufferers struggling to control their own bodies. “It was the truest movie I have seen about dystonia,” she said. “Not soppy, but true to life.”

If the movie seemed authentic to Kimmelman, it might have been because its creator grapples with many of the same issues as the people in her film. Laurel Chiten, who has been making movies for 20 years, also has dystonia and filmed the documentary to inform the public and the medical community about a condition of which few have very much knowledge. The type of dystonia that affects Chiten is not genetic (her symptoms started after a car accident), while the one that affects Kimmelman, which is called “primary dystonia”, is a genetic disease more common among Ashkenazic Jews. But for both conditions, the basic mechanism is similar. “Dystonia is when you tell your body to do one thing and your brain tells it to do something else,” Chiten says at the beginning of her film.

“Twisted” runs 54 minutes and was broadcast nationally on PBS in January and February, attracting some 1 million viewers. Before the broadcast, Chiten and some of the dystonia patients she filmed traveled around the country to more than 20 free screenings followed by panel discussions. The movie started a national conversation about the disease.

“It brought a lot of hype to dystonia,” said Barbara Kessler, vice president of awareness at the Dystonia Medical Research Foundation. “It is a great explanation of the disorder, in a very human way.”

In the early 1960s, knowledge of the disease was limited. Kimmelman remembered that doctors who knew about dystonia cataloged it as a disease for “bright Jews.” Shari Tritt, one of three people featured in “Twisted,” said that when she and her parents were in search of the right diagnosis, most doctors thought the illness was “all in her head.” According to Kimmelman, some misdiagnosed dystonia sufferers have spent time in psychiatric institutions.

While such misdiagnoses have dwindled in recent years, the film has, nevertheless, served as a powerful educational tool. After the screenings, Chiten received several phone calls from people saying that the film had saved them from years of misdiagnoses. The same thing occurred at the Dystonia Medical Research Foundation. “People called who had never heard of dystonia, and said, ‘Oh, my gosh, I know someone who has these symptoms and he doesn’t know what is wrong,’” Kessler said. Traffic on the Foundation’s Web site increased 25% after the film’s release.

On the PBS Web site, patients and their relatives used the online message board to talk about the movie, discuss possible treatments, share their experience with the disease and connect with other patients. “The response was amazing,” Chiten said.

Indeed, it was not unlike the response to her 1993 documentary “Twitch and Shout,” about Tourette Syndrome. “The movie about Tourette Syndrome” — a disease from which Chiten also suffers — “gave me the motivation to make this one, because the effect of the movie was huge,” she told the Forward.

As a filmmaker with dystonia, Chiten has had to master the unpredictable. She can go for years with mild symptoms, and then suddenly be struck by terrible pain. When the symptoms become too much, Chiten has to stop everything. “It is hard to make movies with dystonia, but if I didn’t have dystonia I probably wouldn’t have made movies. It is the incentive behind my films,” said Chiten, who feels that most of her work is about suffering and how to overcome it.

Because it focuses on the daily lives of dystonia patients, “Twisted” was not only useful medically; it supported dystonia patients and their relatives in their daily struggle with the disorder. “It helped my family understand how dystonia has changed my life and why I don’t like to go out as much as I used to,” said Dianne Kunzman, one of the many patients who wrote about the movie on the PBS Web site.

Furthermore, it showed that people with dystonia can lead full lives. When Tritt, whose story is told in the film, was young, surgery gave her the ability to walk but took away her voice. She now communicates mostly through sign language. Yet, despite her physical limitations, Tritt is married, works and travels. “I still am the poster child of dystonia, because I’m out there living my life. Most people with dystonia hide from the world out there and it’s sad,” Tritt wrote in an e-mail to the Forward.

The film concludes with an exploration of deep brain stimulation, a risky procedure that can effectively treat certain forms of dystonia. The treatment involves the implantation of a brain pacemaker, which sends electrical impulses to specific parts of the brain. For Remy Campbell, the surgery was successful. Campbell, an artist who used to walk bent over at a 45-degree angle, can now stand up straight. For Pat Brogan, a basketball coach, the results were mixed while filming was going on. Since then, his situation has improved.

Though she has informed the public about the disease and some possible treatments, Chiten is far from content. She is now working with the Dystonia Medical Research Foundation to distribute DVDs to hospitals and libraries, medical schools, nursing schools and physical therapy schools.

Tritt agrees that much still needs to be done to heighten awareness of the disease, but she sees the arrival of Chiten’s film as a boon. “People who may have the disease are now not afraid or ashamed to go to a doctor and say, ‘I think I have dystonia,’” she said. “They are armed with more knowledge.”

Purchase the DVD of “Twisted” here