When his arm moved on its own: From a patient’s crisis to a breakthrough in epilepsy research

One afternoon in 2019, Don Elliott was sitting on his back porch reading when he noticed something strange. Without warning, his right arm began lifting on its own.

He didn’t think much of it at first and even called his wife, Kay, over to watch. But the movements didn’t stop. Over time, they progressed, affecting his shoulder, his face, and eventually his speech.

Initial scans at a hospital near their home ruled out a stroke or brain tumor, which brought some relief but no answers. Over the next few days, Don’s symptoms continued to worsen. He began experiencing constant, involuntary movements, including persistent foot tapping.

By the time Don was referred to Memorial Hermann-Texas Medical Center, his body was in near-constant motion.

“I’ve never been so relieved to get to a hospital,” Kay says.

Don was admitted to the epilepsy monitoring unit, where specialists determined he had a rare form of autoimmune encephalitis, a condition that has been documented in only a few thousand cases worldwide.

Samden Lhatoo, MD—a nationally recognized neurologist and epilepsy specialist who serves as a professor in the Department of Neurology and the John P. and Kathrine G. McGovern Distinguished Chair at McGovern Medical School at UTHealth Houston—led Don’s care. Although Don remembers little from those early weeks in the hospital, Kay recalls Lhatoo’s steady presence throughout her husband’s treatments.

“He told us, ‘Even if you don’t see me all the time, know that I’m always behind the scenes monitoring,’” she says.

Don improved and was discharged but soon had to be readmitted after continued seizures caused repeated falls.

“He was falling so much, I always had his knees bandaged,” Kay remembers.

Adjustments to his treatment plan eventually stabilized his condition. In addition to high doses of epilepsy medication, Don underwent chemotherapy treatments every six months. Over time, he progressed to the point that his medications were reduced, and eventually the chemotherapy was stopped altogether.

Then one day six years later, Lhatoo delivered decisive news: Don was cured.

Today, his routine looks much like it did before his illness.

“I feel great. Like nothing’s ever been wrong with me,” says Don, a longtime business leader who owned multiple car dealerships in Texas before retiring to North Carolina.

Coming to Houston regularly to see Lhatoo—the Director of the Texas Comprehensive Epilepsy Program at McGovern Medical School—the couple began thinking about how they could support his research, recognizing its impact on the care of patients like Don. With long histories of service on hospital and community boards, they understood the challenges physicians face in securing research support, particularly as federal funding grows more unpredictable.

The couple made donations that served as bridge funding between grants, allowing Lhatoo’s research to continue during a pivotal period.  That work ultimately led to a major breakthrough: the identification of sleep-related biomarkers that may serve as early warning signs for Sudden Unexpected Death in Epilepsy (SUDEP), one of the leading causes of death in people with epilepsy.

Don is quick to downplay their involvement in this discovery.  

“I literally fell into it,” he explains. “We’re just happy our paths crossed.”

Looking back, Don remains deeply grateful for the care he received and where he received it.

“We’re lucky that Houston has a one-of-a-kind medical center,” he says. “Miracles happen there every day, and I was blessed to be one of them.”