My Parents Are Growing Old With Cerebral Palsy—and Our Health Care System Is Failing Them

By Jeremy Klemin: For Complete Post, Click Here…

Cerebral palsy was long considered a children’s condition. People aging with it face a dearth of research and health insurance that can’t comprehend their disability.

As the child of two parents with cerebral palsy, I learned at the age of six or so to offer some digestible definition of the condition to anyone who asked: It is a disorder that happens because of brain damage, usually around the time of birth. I learned the day-to-day rhythm of helping my parents: Push dad’s manual wheelchair up a restaurant’s steep switchback ramp; steady mom’s walker as she gingerly steps off a curb. It was almost fun for me, a sort of collaborative game with my parents. But as they got older, it became clear that aging meant something different for them than for most people. My mom could no longer walk unassisted after the age of 40, and by the time she was 60, she’d all but lost the ability to walk. In the span of a decade, I saw my dad use his crutches for the last time and then transition from a manual wheelchair to an electric one. None of us knew what these changes meant, nor did the doctors my parents went to. 

Cerebral palsy was long thought of as something that affected only children, something that “disappeared when you were 18. People with cerebral palsy knew that it didn’t,” said Dr. Edward A. Hurvitz, who started his career as a pediatric rehabilitation specialist and became interested in adults with CP as the children he worked with grew up. “I started to look up the research on it,” Hurvitz said, “and there was barely anything.” That’s beginning to change: The last decade or so has seen an uptick in research about adults with CP. One of the most important takeaways from this new body of work is the finding that health and mobility issues associated with CP do not stabilize—they worsen, starting in the late teens and early twenties. Studies have highlighted that while CP is not progressive like multiple sclerosis, muscular dystrophy, or Alzheimer’s, its clinical manifestations do change throughout an individual’s lifespan. Many experts have settled on describing its effects as “early aging.”

2016 study about exercise specifically for adults with CP—the first of its kind—suggests that an ongoing physical fitness regimen is effective in combatting this aggressive early aging, now understood to be a hallmark of CP. The finding is significant because for much of the twentieth century, the prevailing belief was that exercise was actually harmful to people with CP. 

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