After an encephalitis diagnosis changed his life, here's how a Sewickley man regained his strength
February 22 marks World Encephalitis Day, helping to raise awareness of a disease many don't know about.
In the last decade in the United States, approximately 250,000 patients were admitted to the hospital with it, including Doug Upton, a veteran from Sewickley. As he walked the stairs in his home on Friday, you would never know that just a few years ago, he struggled to move his feet and, before that, was stuck in a hospital bed.
"I thought I'd never walk again. I thought it would never be the same," Upton said.
It started in 2016 while serving in the U.S. Marine Corps in Jordan.
"My legs kept going numb. I'd have numbness from like my chest down, and my legs wouldn't work," Upton said.
Once back in the U.S., a neurologist diagnosed him with multiple sclerosis, and Upton retired from the military. Then, in 2022, he was admitted to the hospital after two months of suffering from what he thought was a cold he couldn't shake.
"Couldn't walk, couldn't speak, couldn't feel hot or cold, couldn't tell time," Upton said.
His memory also faded. He was in pain, and he was losing his vision. At first, doctors thought it was all related to MS, but eventually blood tests and an MRI revealed he had autoimmune encephalitis. They told him it was likely a result of his MS medication, which had suppressed his immune system.
Dr. Michel Toledano is an assistant professor of neurology at the Mayo Clinic and on the scientific advisory committee for Encephalitis International.
"That scenario as a whole is not super common," Dr. Toledano said, referring to Upton's case.
Dr. Toledano said the condition can be infectious or autoimmune, caused by inflammation in the brain. Mortality can be as high as 40%, but those who survive can have significant life-changing consequences.
"It's not super common like stroke, but it's common enough, and it results in significant disability, but unlike stroke, people don't really know about it, and people have never really heard about it," Dr. Toledano said.
It's why Encephalitis International is launching a new campaign with the acronym F.L.A.M.E.S., highlighting major symptoms for the disease so more people recognize it early and can seek possible treatment.
"The 'F' stands for flu-like symptoms. The 'L' is for loss of consciousness. The 'A' is for acute headache, 'M' for memory problems, 'E' for emotional or behavioral changes, and 'S' for seizures," Dr. Toledano said.
After about four months in the hospital and three months of outpatient rehab, Upton slowly re-learned how to walk, do everyday tasks, and see and talk, eventually, regaining his strength to finish the Marine Corps Marathon in Washington, D.C. last October.
"Finishing the marathon was kind of a validation, like, 'Hey, you're fully back to where you used to be,'" Upton said. "It just showed me that you just have to have the grit and determination to do stuff, you can get it done."