Amanda Lockhead Promotes Awareness of Under-Recognized Brain Disorder

Nashua Dystance4Dystonia 5K Walk/Run is Sunday, May 15, 2022
Amanda Lockhead
Amanda Lockhead
NASHUA, N.H. - April 3, 2022 - PRLog -- Amanda Lockhead is organizing the Nashua Dystance4Dystonia 5K Walk/Run on Sunday, May 15, 2022 at 10:30 AM at Mine Falls Park to raise dystonia awareness and funds for urgently-needed research toward a cure. This is a timed race open to runners and walkers. Proceeds benefit the Dystonia Medical Research Foundation.

Dystonia is a disabling neurological disorder that causes involuntary body movements and postures. Lockhead began experiencing symptoms as a teen but was not properly diagnosed until her 20s.  She experienced painful muscle spasms in her hands, feet, jaw, and neck—at times so severe she dislocated her shoulder joint. By the time her first child was born, in 2010, she was in constant pain and had lost the use of her hand, which interfered with even holding her new infant. "I felt like I couldn't take care of her the way I needed to, and I could hardly take care of myself," says Lockhead. "I needed to be able to change her diaper, and hold her hand when she took her first steps—all the things I had been dreaming of doing as a mom."

Just months after delivering her daughter, Lockhead began the process for deep brain stimulation surgery. The procedure involved surgically implanting electrodes in her brain and a battery-powered stimulator in her chest wall. The treatment is continually monitored and adjusted by a remote device that controls the electrical stimulation to the brain. "And it worked. It worked awesome," says Lockhead. Her pain and symptoms were reduced; she could use her hands and her feet. Unfortunately, as is the case for a percentage of patients, the benefits did not last. Lockhead has experienced a rollercoaster of setbacks and comebacks, including a life-threatening infection and broken DBS device, each of which required the procedure to be reversed and redone on separate occasions. At this time she depends primarily on botulinum neurotoxin injections ("Botox®") to help relax the muscles in her hand and foot as much as possible.

Because dystonia is not better known, the symptoms are frequently misdiagnosed, often mistaken for signs of mental illness, substance abuse, or poor social skills. Dystonia is more common than Huntington's disease, muscular dystrophy, and Lou Gehrig's disease (ALS). 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.

The event website is:

The Dystonia Medical Research Foundation (DMRF) is the leading dystonia patient advocacy organization. The DMRF can be reached at 800-377-3978,, or

Jessica Feeley
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