Question: I am looking for an article that explains post-polio syndrome. The significance of finding the right article is being able to convey the information to my Uncle Phillip’s verbally abusive 35-year-old son who thinks his dad is “not trying hard enough,” and his nagging wife who is always trying to force him into physically demanding activities. He goes to bed a lot of the time in pain. I’m hoping to shed some light on the seriousness of his condition and be able to explain what his central nervous system can and cannot do even at his best. How would you explain it?
Answer: There are many good articles that explain what PPS is and I will list some of my favorites at the end of this answer. The ideal reading about PPS for helping your Uncle Phillip would emphasize the importance of avoiding overuse of muscles in order to reduce pain and fatigue symptoms and to prevent worsening of weakness. However, your greater challenge may be how to encourage your “nagging” aunt and “verbally abusive” cousin to care enough about your uncle’s well-being to read anything about the problems of older polio survivors. They most likely will need a trusted authority figure, such as a specialist physician, to say that your uncle has PPS and to explain that any declines in his energy or ability to do things is due to his medical condition of PPS and not due to “laziness” or “giving in to aging.”
Your uncle himself may be in some denial about his declining abilities, possibly from a “fear of giving up” or “giving in.” He, too, may need to learn much more about PPS in
order to be a better advocate for himself and to avoid being pushed or derided by family in ways that worsen his symptoms. One strategy you may use to help convince him that YOU are concerned about his condition (based on your readings about PPS) is to make it clear to him that a comprehensive post-polio evaluation may help him. If he is diagnosed with PPS, you and he can encourage his wife and son to come to a doctor’s visit with him where they can ask questions and, hopefully, learn to be concerned about his condition.
After all, if he loses further functional abilities, he will be less useful to them and their frustrations that lead to nagging and berating will get worse. If they can be led to become concerned, then they will want to read articles that will be of further use to their understanding of why he can’t do as much as he used to do or as much as they would like him to do.
The problem of family members not understanding or accepting declining functional abilities of aging polio survivors is unfortunately fairly common. Professional counseling, as well as patient/family educational resources such as those on the following list, can be very helpful for improving these circumstances.
Post-Polio Health (Vol. 33, No. 3, Winter 2017)