By Stephen Pate
If you have Post Polio Syndrome (PPS), it’s vital to exercise moderately every second day to keep the muscles we have and avoid obesity, diabetes, stroke and heart disease.
Exercise also helps us accomplish more of those activities of daily living and can improve how we feel.
From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
Q: We have known about the late effects of polio for almost 30 years. I've gotten a lot of advice during that time and wonder about other polio survivors. What's the best post-polio advice you ever received?
Linda Cannon Rowan
When I complain to my doctor about pain or fatigue, he usually tells me that I am not getting enough rest.
I GET SO TIRED OF HEARING THAT I NEED TO REST! BUT I KNOW THAT I MUST!
A day without pain is rare.
Please understand that consistently using the principles discussed below is important when performing ANY activity. In other words, do not wait to use these principles just when you are in pain, but rather, use the principles all of the time.
Why should you use these principles?
Ergonomics is an interdisciplinary field concerned with the performance and safety of individuals at work, how people cope with the work environment, interact with machines, and, in general, negotiate their work surroundings. Applying this knowledge to all environments, tools, tasks, and jobs produces ones that are safe, comfortable, and effective. As strength and endurance decrease, the use of ergonomic principles will assist polio survivors in remaining employed, living in their own homes, and accessing their communities.
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.
Sunny Roller, MA, Michigan
New pain, muscle weakness and general fatigue are common complaints of post-polio individuals who fought polio once and won, but are now reluctantly having to return to rehabilitation after a 30-40 year reprieve.
Jane Dummer, Maryland
I am qualified to speak about fatigue because I fade right after lunch. When I agreed to speak, I realized very quickly I was going to discuss something which is global, yet something I really cannot define for you.
So what am I going to say? Fatigue is a normal part of living. Perhaps I can say something about what I have experienced that would help people who do not yet know they have polio-related fatigue to see how it may be different from the fatigue that anyone who is alive has.
Living with a chronic condition requires a lot of adaptations. The one thing you don’t want to cope with is the effects of an injury that could have been prevented. Falls are the second leading cause of death from accidents for people of all ages and more than 200,000 people suffer a fracture of the hip each year from falls. For some, it may be impossible to continue living alone after suffering a serious injury.