Amanda Lockhead is Leading 500 Mile March to End Dystonia
Young Mom is Walking a Mile for Every $5 Donated toward Urgently-Needed Research
"I let dystonia get me down so many times, and during the pandemic it got worse," she said. "One day I decided to do something about it. I want to raise money for research, and I want people with disabilities to know they can chase their dreams. Walking has helped me become more fit, less stressed, have more energy, and helps lessen my dystonia symptoms. I hope by sharing my story I can make a difference in at least one person's life."
Lockhead began experiencing dystonia symptoms as a teenager, following a shoulder injury. She developed painful, involuntary muscle spasms in her hands, feet, abdomen, and neck—at times so severe she dislocated her shoulder joint. Lockhead was not correctly diagnosed until her 20s. She ultimately had deep brain stimulation (DBS), a procedure that involves surgically implanting electrodes in her brain and a battery-powered stimulator in her chest wall. The treatment is adjusted by a remote device that controls the electrical stimulation to the brain. "And it worked. It worked awesome," said Lockhead. Her pain and symptoms were reduced. However, she has since experienced a rollercoaster of setbacks and comebacks, including a life-threatening infection and broken DBS device, each of which required the procedure to be redone. She continues to require botulinum neurotoxin injections in her limbs to keep them mobile and has had several surgeries to try to regain use of her hand.
Individuals with dystonia struggle to walk, speak, or move their bodies freely. Because it is not better known, symptoms are frequently misdiagnosed and/or mistaken for mental disturbance, substance abuse, or poor social skills. Dystonia affects 250,000 people in the US. There are multiple forms of dystonia that impact people of all ages and backgrounds. There is not yet a cure and, though treatments exist, there is no therapy that benefits even a majority of patients.
Information about March to End Dystonia is available at: https://dystonia-
The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. More information is available at https://dystonia-