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Aging Well with Post-Polio Syndrome: Don’t Take Fatigue Lying Down

Rehabilitation Research and Training Center (RRTC) on Aging with a Physical Disability (2011)

Fatigue is a major problem for many people with post-polio syndrome (PPS), one that is frustrating and hard to measure. It’s a symptom that can affect your ability to work, your mobility and your quality of life. People with PPS report fatigue as their most persistent and debilitating symptom.

Best Post-Polio Advice

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?

Scooter or Power Chair: A Stigma

Q: I’m in the market for either a power chair or a scooter and am trying to make up my mind which would be better for me. I’ve heard there’s a stigma associated with using a power chair rather than a scooter. What’s that about?

Positioning for Comfort during Work, Leisure Activities and Rest

I. INTRODUCTION

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?

Reasonable Goals for Physical Therapy.

Nearly every polio survivor comes to health care providers initially with the hope – whether clearly evident or secretly buried – that someone will be able to "make me as I was." Because of this hope, some survivors are initially reluctant to hear about suggestions a PT may make regarding lifestyle modifications, equipment options, etc. Often, polio survivors consider accepting changes such as these as an act of "giving up."

Ergonomics

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.

Employment

Many survivors need to work because their jobs provide a necessary source of income as well as health insurance and retirement benefits. Many derive a sense of satisfaction or an identity from work. However, some face the dilemma of fulfilling work obligations and demands which can increase the strain on overworked muscles and increase “global” fatigue affecting mental acuity. The struggle to stay employed and the fear of potential loss of income creates a stress on personal relationships.

Computer Comfort

Whatever difficulties you are grappling with - visual or hearing impairment, mobility challenges, invisible disabilities and chronic conditions - there is a way to access cyberspace. Computers bring the world to you and enable you to enter the world. Communication, education, entertainment, shopping, employment--it’s all available thanks to ongoing technological advances.

Roll Models: Scooters and Wheelchairs

Many of us who had polio used canes, wheelchairs and bracing on our path to recovery and gradually were able to relinquish them. Others of us have developed different chronic conditions that have managed just fine until now without mobility equipment. But as we get older our bodies change, our symptoms escalate and daily activities use so much more energy that we don’t have the get-up-and-go to do what we have to do, much less enjoy the fun stuff. When walking becomes difficult, we have to compromise, reduce activities or eliminate them.

Walkers

If you’re at risk of falling or have some balancing problems you might want to consider using a walker. It is imperative that your walker is properly fitted with comfortable handgrips and that it is the correct height for you. To determine the correct height, stand inside the walker, let your arms rest at your sides and match the crease on the inside of your wrist with the top of the walker.

Opportunities to Participate in Research

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A service of Post-Polio Health International

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