Joan L. Headley, Executive Director, Post-Polio Health International
Post-Polio Health International created a survey asking polio survivors about their post-polio medical care. The survey, Post-Polio Medical Care: Post-Polio Specialists and Primary Care Physicians, was posted online and a version was also published in Post-Polio Health (Volume 30, Number 2).
Data was gathered from 632 people; 496 completed the survey online and 136 copies received by mail were entered manually. Partial information was also entered.
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New muscle weakness is the hallmark of post-polio syndrome and can significantly impact activities of daily living. Some amount of new muscle weakness is likely to occur in about half of post-polio individuals (Jubelt & Drucker, 1999). Muscle weakness is most likely to occur in muscles previously affected during the acute poliomyelitis followed by a partial or full recovery (Cashman et al., 1987; Dalakas & Illa, 1991).
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Post-polio advocates noticed that polio survivors experienced very frustrating visits to physicians when reporting new post-polio problems. Barriers included the limited amount of time a physician had for an appointment and the lack of experience of physicians in the early days. They weren’t as skilled at asking the right questions. Additionally, polio survivors knew they didn’t feel well, but hadn’t spent much time thinking about details. In fact, many survivors spent years pushing polio and its effects out of their everyday thoughts.
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"Chapter 7: Polio"
in Werner, David. Disabled Village Children: A Guide for Community Health Workers, Rehabilitation Workers, and Families. Hesperian Foundation. 2009.
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The life-course framework for studying disability emphasizes the importance of developmental stages and tasks within an historical and medical context. It finds that decisions about current disability-related issues are influenced by broader concerns about identity and the fulfillment of personal and cultural expectations (Scheer & Luborsky, 1991). Early life experiences with disability are often found to still be important in later life.
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