A month ago, DMRF Board Member Peter Cohen experienced what he called "a frightening reality check." One of the batteries in his implanted deep brain stimulation (DBS) hardware weakened unexpectedly, and his severe generalized dystonia re-surfaced in full force. After living for more than a year virtually symptom-free, Peter explained, "within a day I couldn't lay down, I couldn't sleep, walk, eat. It was very scary, and it reminded me how badly we need a cure."

Peter (left) pauses for a photo with DMRF's Scientific Director Mahlon R. DeLong, MD at a board meeting.

Peter's neurosurgeon replaced the battery, and fortunately the dystonia subsided. But now Peter feels he may be living on borrowed time.

“DBS only masks my symptoms,” he explained. “If anything were to go wrong with my wires or batteries, I could be back to being homebound.”

Although DBS has dramatically changed Peter’s life for the better, he remains in a vulnerable position. The procedure is not guaranteed, and if it were to cease working he has no ‘safety net’—no alternative treatment that would restore his quality of life.

 

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