Patient Experience — Dystonia

Peter

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.

Peter Cohen, Portland, Maine, was diagnosed with generalized dystonia when he was an adolescent. Progressive symptoms have left Peter unable to walk or stand upright. He is often lying down — the position he was forced to assume during his wedding ceremony a few years ago.

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions that force certain parts of the body into abnormal, contorted, sometimes painful, movements or postures.

By the time Peter entered Carnegie Mellon University, where he earned his bachelor’s and master’s degrees, he had to sit on his right arm to prevent significant tremors and spasms.

The stress of law school intensified his symptoms. He developed back and cervical problems from his compromised posture, and now has significant pain in his arms, legs and hands. Classified as “homebound” by Medicare, Peter ate on the floor, lying on his side.

Peter’s physicians treated his condition with a variety of medications. He developed immunity to some, and was unable to tolerate the severe side effects of others.

As part of his work with the Dystonia Medical Research Foundation (DMRF), Peter met Dr. Mahlon DeLong, of Emory University. After examining Peter, Dr. DeLong recommended Activa Therapy, which uses brain stimulation technology. The therapy has been used to treat more than 30,000 people worldwide for the two most common neurological movement disorders—Essential Tremor and Parkinson’s disease.

Peter began using Activa Dystonia Therapy in February 2003 and is doing well. Peter has started traveling again. He now walks through the airport and no longer requires a wheelchair. Peter is also able to drive and has resumed exercising. He is able to sit up straight on the exercise bike at the gym, and walks up to two miles a day.

Although Peter initially experienced some involuntary pulling in his hand and arm before his stimulation parameters were optimized, he has no negative side effects related to the therapy.

While the safety and effectiveness of this therapy have not been established and results may differ for each patient, Peter is pleased with his results. “Activa Therapy has helped me quite a bit,” he says. “I hope to improve even further and do some of the things I used to do.”

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