NASHUA — Amanda Sleeper was overjoyed to be expecting her first child, but the pregnancy prevented her from receiving urgently-needed treatment for dystonia, a disabling neurological disorder that began while she was a teen but went undiagnosed until her 20s.

Sleeper experienced painful, involuntary muscle spasms in her hands, feet, jaw, and neck — at times so severe she dislocated her shoulder joint. Doctors recommended deep brain stimulation surgery, but the unknown risk to her baby put those plans on pause. By the time Sleeper’s daughter 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,” Sleeper said. “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.”

Sleeper is organizing the Nashua Dystance4Dystonia Walk, set for 10 a.m. Sunday at Mine Falls Park. This is to raise dystonia awareness and funds for research toward a cure. The cost is $20 for adults, or $10 for children. Proceeds benefit the Dystonia Medical Research Foundation.

Details at www.dystonia-foundation.org/nashuawalk. Dystonia events are happening in cities across the country throughout 2019.

Just months after delivering her daughter, Sleeper began the deep brain stimulation process. 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,” Sleeper said.

Very little is known medically about pregnancy and deep brain stimulation, and Sleeper’s second pregnancy helped pave the way for other women with implanted deep brain stimulation devices. She gave birth to her second child, a son, in 2013.

Sleeper has experienced setbacks and comebacks, including a life-threatening infection. Her most recent replacement was January, and she has benefited greatly.

Because dystonia is not better known, the symptoms are frequently misdiagnosed, often mistaken for mental illness, substance abuse, or poor social skills. There is not yet a cure and, though treatments exist, there is no therapy that benefits even a majority of patients.

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

Newsletter