Filmmaker Laurel Chiten was 17 when she was diagnosed with dystonia after surviving head wounds from a serious car accident. Many years prior, she had been diagnosed with Tourette syndrome, which was her influence to make Twitch and Shout, an Emmy-nominated documentary about people living with the disease (P.O.V., 1995). Now an independent filmmaker for over 20 years, her credits also include Touched, about people who believe they have been abducted by aliens, and THE JEW IN THE LOTUS (Independent Lens, 1999), about a group of rabbis who met with the Dalai Lama.

Tell us how you are doing—what have you been up to since filming ended?

Since the completion of TWISTED I have been working with the Dystonia Medical Research Foundation in setting up a whirlwind tour of screening in many U.S. cities. At each screening we have a panel that includes me, someone from the film and a local neurologist. The responses have been overwhelming.

Here are some highlights from our screenings:

In Chicago, Shari and Ira Tritt were on the panel. The last question from an audience member was, “Does dystonia get worse as you get older?” I qualified that question asking the neurologist, “Does it get worse during menopause?” She answered, “Well it can.” Shari raised her hand to speak. She signed for a minute or so. Ira interpreted for her: “Oh great,” she said, “I have something to look forward to.” The audience broke into laughter.

In Atlanta, we screened at the Neuroscience Conference and I had the good fortune of speaking on a panel for the Q&A afterwards with Dr. Mahlon DeLong, a leading neurologist from Emory University.

Medtronics, the makers of the devise used in deep brain stimulation (DBS), sponsored two screenings in Minneapolis, one for the employees and the other for the public. Remy, who had the DBS, spoke on a panel with me. It was wonderful for the staff to hear from a recipient of their device, and see how it radically changed her life.

Read updates and Q&A from others featured in TWISTED >>

Learn more about dystonia >>