About five years ago, Todd Neva, now of Hancock, Michigan, began having trouble lifting his daughter from her car seat.
Over time, this muscle weakness in his left biceps progressed to other areas until a doctor eventually diagnosed Neva with amyotropic lateral sclerosis (ALS), or Lou Gehrig’s disease.
Back then, Neva, who had his MBA degree, was an up-and-coming S.C. Johnson (Glade, Pledge, and Windex brands) executive.
In a telephone interview, 44-year-old Neva said, “My reaction to the doctor’s diagnosis was just incredulous. I couldn’t believe it. I spent three months getting second opinions, but after hearing it from the third neurologist, I finally accepted it.”
According to the National Institutes of Health, ALS is “a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles.” There is no cure and most people die of respiratory failure within five years. The disease usually doesn’t impair a person’s mind or personality.
Said Neva, “It’s one of the most devastating muscular dystrophies and probably the granddaddy of them all because it attacks both upper and lower motor neutrons.”
Neva would grieve over losing his ability to hold his job, which occurred June 2012. He felt he hadn’t accomplished everything he’d wanted in his short business career and had left “a lot on the table.” His last company position was as manager of global manufacturing diagnostics and analysis.
He said, “My first year after the diagnosis I was still fairly functional, but wasn’t able to lift much with my arms. In the second year, my hands and legs weakened. Now four-and-a-half years in, I’m in a wheelchair all day and can’t stand or walk. My arm function is close to zero.”
Neva and his family moved to northern Michigan, near his in-laws, who help today with Neva’s care. He authored a book, Heavy, which shares his experience from the perspective of someone with a terminal illness.
Before writing, he had read books about people going through tough times, but “those books left us feeling alone,” he said. “Here we were in the middle of this intense gunfight and these people were saying it was tough but they had made it through. But we weren’t going to make it through.”
His book helps people find meaning. He said, “Having to experience suffering helps us to love and have compassion for others.”