Patient Experience — Dystonia

Paula

Following is the story of one patient’s experiences with Activa Dystonia Therapy to manage some of the movement-related symptoms of primary dystonia. Results vary; not every response is the same.

Paula is a woman who truly loves life. This was not always the case. Paula has a neurological movement disorder called dystonia, which causes severe muscle spasms and contractions that force the body into abnormal, contorted and sometimes painful, movements and postures. For more than 12 years, she and her loved ones tried to cope with her disabling pain and disfigurement — symptoms that often affect dystonia patients.

In 1988, Paula’s pain began interfering with all aspects of her life. Paula’s career and professional relationships began to suffer, as colleagues at one of the nation’s top radio stations couldn’t understand what was happening to the enthusiastic and vivacious woman they once knew and admired. Eventually, Paula was forced to quit her job.

Embarrassed by her appearance, Paula stopped venturing outside of her home. She became depressed. She struggled in excruciating pain, unable to sit down or walk for more than a few minutes at a time. Paula worried that she would never again be able to do the things she either had to do or enjoyed doing, such as driving, visiting the dentist, playing with her nieces and nephews, working or taking vacations.

After multiple visits to different doctors, Paula was diagnosed with dystonia in 1990. She immediately started regimens of oral medications and injection treatments. At one point, Paula received up to 20 shots of Botox® every few months. At first, these treatments helped stabilize her symptoms, but “My situation had grown out of control,” said Paula.

In 2001, Paula began using Activa Dystonia Therapy, which had been approved for people with Essential Tremor and Parkinsonian tremor. After the procedure, Paula spent time reorienting herself to her own body. “I am still amazed that I can actually pick up objects with my hands. Before Activa Therapy, my body did whatever it wanted. I had no control over it.”

Paula has not reported any side effects with Activa Therapy, although the major risks include intracranial hemorrhage, device-related infection, paresis/asthenia and hemiplegia/hemiparesis.

Today, Paula lives on her own and maintains the active lifestyle she previously enjoyed. She’s again able to cook, swim, exercise and meet friends for dinner — things she had to put on hold due to dystonia.

“Most people can’t believe that I’m the same person,” said Paula. “I’m just thrilled to have my life back.”

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