Resource Book of Articles Related to Polio and Post Pokio Syndrome – March 2022
Introduction
To many in the U.S. medical community, polio is considered either an “orphan disease” or a rare disease. This is because the polio virus has been eradicated in the U.S., almost all the U.S. polio population is over 65, our population numbers are dwindling, and because there is no cure for its after-effects. This means that, with few exceptions, those in the medical profession do not focus on polio or postpolio syndrome, may only recognize that “we are still here,” and are not spending time, money and research to address our needs specifically.
So, rather than expending OUR energy searching for a polio specialist to meet our specific needs, we need to become our own best advocates whenever interacting with the medical professionals that are available. Our best healthcare outcomes occur when our medical professionals listen as we relate the impact of polio has on each of us specifically, and are willing to learn what polio is, what it does to the body and how it impacts or is impacted by the specific problem being addressed.
Finding professionals with those skills and that attitude allows us to then select our medical service providers based on our personal comfort/trust in them, our ability to work with them and on their skills in practicing their specialties. In seeking a good fit for polio needs, osteopaths (D.O.) and physiatrists, doctors who have more extensive training in muscular-skeletal issues, gerontologists, and physical therapists who specialize in neuro-muscular problems may have skills that better relate to polio and post-polio syndrome.
Being our own best advocate requires knowledge and communication skills on our part. We need to know our own bodies, minds and emotions, our strengths and weaknesses, our skills and limitations and be able to clearly articulate the relevant aspects to our service providers. Then, it is helpful to have some knowledge of the
scientific and medical issues and resources that are available so we can carry on a dialogue about our issues. We need to listen to what our medical professionals have to say and offer, based on their expertise. Then we can work in partnership to address the issues and solve the problems based on the best outcomes available.