A National Institutes of Health website defines post-polio syndrome (PPS) as a condition affecting “polio survivors years after recovery from an initial acute attack of the poliomyelitis virus.” People with PPS can have new weakening in affected and non-affected muscles, fatigue, joint degeneration pain, and muscle atrophy. The United States has more than 400,000 polio survivors and perhaps 50 percent have PPS.
Regina Butts developed polio in 1948, not long before the first polio vaccine became available. “I got polio at 18 months,” said 62-year-old Butts in a telephone interview. “My mother’s story is that she handed me the baby bottle in the crib and I wouldn’t reach for it with my hand. She just knew something was wrong.”
Unlike many other children, Butts wasn’t placed in an iron lung. She could walk, though not well. She remembered trying to run across the yard as a child and having her left foot severely turn out to the side. To correct it, doctors tried several surgeries to tighten tendons.
She recalled, “We went to another town when I was a child to meet some (distant) relatives and three cousins about my age asked what was wrong with me. I told them and they ran the other way.” Other than that one instance, Butts couldn’t remember any awkward social situations growing up. She attended parochial school in a tight-knit rural community. She was “always picked last” for school games because she couldn’t run, she said.
But Butts has always walked, and today does it with a metal knee-to-foot brace on her left leg.
“Now [PPS] affects me in terms of stamina,” she said. “I’m more cautious walking because I can fall down. Walking across the front yard can be dangerous if I’m at home by myself and I always go outside with my (wireless) telephone. When out shopping, sometimes I use a wheelchair.” She also has difficulty performing repetitive tasks using her arms.
Over the last 13 years, she has worked as a special education paraeducator at a middle school. One teacher told Butts her being there was a good example for both the disabled and non-disabled children.
For people with PPS, she recommended reading the Colorado Post-Polio Connections newsletter, joining a positive support group, and finding a physician “that knows something” about PPS. The latter can be a major challenge for polio survivors.