Head Banging Iron Maiden Tribute Makes Noise for Little-Known Brain Disorder
Big DAMN Metal Show for Dystonia Awareness & Research is November 9
People affected by dystonia struggle for control of their bodies to walk, write, eat, speak, or simply sit still. The nervous system is hijacked by chaotic signals that instruct muscles to contract excessively, causing uncontrollable movements and awkward postures in the body and limbs.
Lares represents at least the third generation in his family to develop dystonia. His symptoms began at age 11 with a twitch in his hand so severe he had to teach himself to write with the opposite hand. By the time he was in middle school, he struggled to walk, his neck was twisted down toward his chest, and he had to physically hold his head up with his hands. It took so much effort to move, he was routinely drenched in sweat, regardless of the temperature. In 2003, he underwent deep brain stimulation (DBS). The multi-step neurosurgical procedure involved implanting electrodes in his brain and a battery-powered simulator in his chest wall. "DBS gave me my life back," says Lares. "It saved my life."
Iron Maiden's music has been an important part of Lares' coping. The intensity of the sound plus lyrics from songs like The Prisoner and The Trooper fuel his perseverance through difficult times. "When something is making your life hell, you want to sit down and have a little talk with it," says Lares. "I've tried negotiating with dystonia for far too long – it's time declare war on it. We need troopers, we need regular people who will show up and help us find a cure."
Dystonia is more common than Huntington's disease, muscular dystrophy, and Lou Gehrig's disease (ALS) combined. Conservative estimates suggest no fewer than 250,000 Americans are affected. Common signs include twisting or abnormal movements of the head and neck, excessive blinking, a breathy or choking voice, hand cramps, or a twisted foot. There is not yet a cure.
The Dystonia Medical Research Foundation (DMRF) is a 501c3 not-for-profit patient advocacy organization. The DMRF can be reached at 800-377-3978 and https://www.dystonia-