How the First Case of a Rare Sleep Disorder Revolutionized Sleep Science

Donald Dorff vividly recalls a football game moment where he was tackled and then suddenly found himself on the floor of his bedroom in the middle of the night. The 67-year-old described how he had crashed into his dresser, causing a mess and breaking things, with the incident happening at 1:30 a.m. How did this seemingly ordinary event become a significant story featured in a major magazine?

Five years prior, Dorff was diagnosed as the first patient with a rare condition known as Rapid Eye Movement Sleep Behavior Disorder (RBD). This diagnosis not only marked him as a unique case but also initiated crucial research into this disorder, revealing early indicators of Parkinson’s disease and a specific type of dementia known as Lewy Body Dementia.

In 1982, Dr. Carlos Schenck, a psychiatrist and sleep specialist, began studying Dorff after he reported experiencing violent nightmares. Schenck, then at the Minnesota Regional Sleep Disorders Center, found that during REM sleep, Dorff's brain was failing to paralyze his body as it should, leading him to act out his dreams violently. This behavior had never been documented before.

Schenck and his team discovered that RBD often involves violent movements such as kicking, punching, and screaming. Some patients might even physically attack their bed partners during these episodes. For instance, one patient repeatedly punched and kicked his wife at night, and another mistakenly harmed his wife while dreaming of hunting.

By 1986, Schenck’s team had published their findings on RBD. Over the years, Schenck noticed that RBD could be an early sign of neurodegenerative diseases like Parkinson’s and Lewy Body Dementia. RBD indicates a loss of the REM sleep paralysis, which is a critical predictor of these disorders.

Initially, it was believed that RBD primarily affected men, but researchers later discovered that women are also impacted, although they may experience milder symptoms. Women with RBD are at just as much risk for developing Parkinson’s as men, despite not seeking treatment as often.

Currently, the North American Prodromal Synucleinopathy Consortium is conducting clinical trials at several medical centers in the U.S. to explore treatments for RBD and to slow its progression to Parkinson’s and dementia.

Donald Dorff, who shared a room with his brothers as a child, showed no signs of a sleep disorder until later in life. As an adult, he began experiencing violent dreams and acting them out, leading to serious injuries. He sought help from Schenck’s clinic, where he was diagnosed with RBD. Although Dorff did not develop Parkinson’s disease quickly, his case provided critical insights for early diagnosis and treatment of neurodegenerative disorders.

If someone begins experiencing frequent and loud talking or movement during sleep after age 50, it's advisable to consult a primary care doctor. This could be an early sign of a neurodegenerative condition, and a neurological evaluation might be necessary.