Diane Wilson watched from the waiting room as medical students in white coats rushed past her into the Duke University exam room where her husband was hooked up to a dinging electromyography machine.
The monitor was picking up Bubba Wilson's muscle activity, and the result offered a rare chance for the medical students to see an uncommon syndrome being diagnosed.
"They wanted all these doctors in training to see what it looks like," Diane said.
Other specialists couldn't figure out why Bubba Wilson had been randomly falling. In 2006, Duke University Health System doctors finally had an answer: ALS. The couple went from knowing little about the syndrome more than 10 years ago to readjusting their lives around it. Now, Bubba has become the face of a new local fundraising and research effort that aims to find a cure for the often-fatal syndrome.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, attacks the nerves that control voluntary movement, according to the National Institutes of Health.
About 10 percent of people with ALS live more than 10 years, like Bubba has. The Wilsons are committed to the mindset that the disease can be what you make of it. Bubba, since the day of his diagnosis, has refused to accept the prognosis.
"I know it's going to take me down," 63-year-old Bubba said. "But I'll be an old, old man when it does."
Researchers at Roper St. Francis want to take some of the guesswork out of the disease. For the moment, there is no cure, and the disease is only diagnosed by ruling out all other possibilities. The Loy Stewart and George C. Wendt Institute for ALS Research, which was established with a $2 million gift to the Roper St. Francis Foundation late last year, is the latest effort in the Lowcountry aiming to find a cure for the syndrome. Its leaders have high hopes for the advancements it might bring.
Bubba will soon give blood to Roper St. Francis' new research arm. He will also help with patient outreach once the institute is recruiting.
The disorder is known to be genetic in a minority of cases. But in most cases, including Bubba's, the cause is unknown. Those with the disease usually die within three years, Dr. Jacobo Mintzer, a psychiatrist and researcher with Roper St. Francis, explained. Little is understood about the reasons why some people live longer, like acclaimed physicist Stephen Hawking, who was 76 when he died March 14.
Bubba's disease has progressed, albeit slowly. He could ride a bike until two years ago. He needs 10 to 12 hours of sleep every night. Though he had to give up his job at a body shop, he continues to drive a golf cart for RiverDogs fans at Riley Stadium.
The kind of slow progression Bubba has experienced wasn't the case for George Wendt's father. When he first heard the diagnosis, Wendt said he asked his father, who raised him as a single parent, what the treatment would entail.
There wasn't a treatment, his father explained. Wendt lost his father nine months later.
It may sound like a lofty goal, but Wendt, a Harvard lecturer and now CEO of the Loy Stewart Foundation for ALS Research, hopes the new institute at Roper St. Francis will become a leading site for ALS research in the world.
"To cure an incurable disease takes incredible passion," he said.
The institute's current research aims to identify some of the biological "markers" that point to ALS. Those biomarkers could hold answers to what is causing the syndrome.
Wendt said they will then attempt to develop a blood test that could lead to a diagnosis, and maybe a new therapy, too.
The therapy available today extends life by only about three months.
Eventually, the research could lead to a clinical trial.
"When you have a crazy idea that is supported by data, then you might have a breakthrough," Mintzer said.
Until then, there is no telling when or how Bubba's ALS will progress. It could move forward a step at any time. For now, its effects are limited to his lower legs, though it's beginning to show in a tremor in his hands. It can be difficult to go to ALS support group meetings and see other people diagnosed with the syndrome lose their functions, and their hope along with it.
Bubba appreciates the chance to influence people's attitudes, though.
"I just refuse to give up," Bubba said. "It's just not going to happen."