Conquering a life of immobility

Roger Hollenbaugh of Bandera suffers from Stiff-Person's Syndrome, a puzzling disease with no known cure and an uncertain long-term prognosis despite undeniably real symptoms. Photo by Jessica Hawley

Bandera resident learns to live with rare, debilitating disease

By Jessica Hawley - Staff Writer

Only a few years ago, Roger Hollenbaugh drove an 18-wheeler all over the United States and beyond the country's border into Canada. He enjoyed taking photographs of the vast and varied landscapes to capture the visions he rolled by at 70 mph.

"People thought I was nuts that I would take pictures through the windshield," he said.

Today, the 37-year-old carefully thumbs through those pictures with rigid fingers, his trucking days a memory. In September 2001, after suffering for more than two years from symptoms that doctors labeled psychosomatic, Hollenbaugh was diagnosed by Dr. Michael Winkelmann, in Jackson, Miss., with stiff-person's syndrome, an extremely rare and, as of yet, scarcely studied neurological disease.

Although the cause of stiff-person's syndrome is unknown in most cases, Hollenbaugh believes his case developed while he was receiving treatment for a migraine headache in a Kerrville hospital on July 10, 1998.

He stated that the hospital staff did not lock the rails on the cardiac bed they placed him on and it collapsed. He said that he hit his spine on the base and split open the back of his head on a cabinet he flipped onto.

According to Hollenbaugh's account, doctors shaved the back of his head, stapled the laceration closed and sent him home the same day.

"They didn't give him any antibiotics or even clean the wound," said Hollenbaugh's aunt, with whom he lives in Bandera.

For several months after the accident, he experienced post-concussion pain and possibly a bacterial infection that moved into his spinal column. Hollenbaugh soon noticed that the left side of his body began to immobilize. He couldn't pick his leg up to bend his knee and the nose of his shoes wore off before the sole showed signs of wear.

Hollenbaugh also experienced an increased sensitivity to loud noises. The sound of an ambulance or police siren sent shocks throughout his system and the left side of his body completely locked up.

Despite repeated and consistent complaints to doctors, he was told that his symptoms were imaginary. He was treated for pain management and nothing more.

Dr. Art Leis, a neurologist and senior scientist at Methodist's Center for Neuroscience and Neurological Recovery, said that Hollenbaugh's condition went undiagnosed because he had a disease that many doctors have never encountered.

According to information from the National Organization for Rare Disorders, doctors from Yale University have theorized that stiff-person syndrome may be an autoimmune disorder in which the body's natural defenses against invading organisms attack connections in the brain and spinal cord where gammaaminobutyric acid (GABA) flows between nerve ends, helping to modulate the central nervous system.

Leis explained that when the body has too little GABA, there is nothing shutting down the nervous system.

"When startled, your body freezes and becomes firm like a rock and you fall like a piece of lumber," Leis said.