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Post-Polio Syndrome

Opening Viewpoints

Patient: It is difficult to find health professionals who understand living with chronic problems. I want someone who listens, who appreciates the coping skills I already have and can offer new ideas. Repeating my history and making multiple appointments is fatiguing. I wish there were a team that could cooperatively help me figure out what can be fixed or adapted. I don't want a quick drug fix, unrealistic exercise programs or expensive equipment. Do the least first - practical solutions that I can maintain over time.

Internist: I'm beginning to see more people with post-polio syndrome. I can address Nancy's physical symptoms, but for mobility and lifestyle adaptations the treatment team should include several disciplines. We don't want to create unnecessary fatigue or duplication of services for Nancy, so I'm referring her to a treatment team for evaluation.

Physiatrist: Nancy comes to our rehabilitation team for treatment of post-polio syndrome even though she sees an internist and nurse practitioner locally. We've seen enough people with PPS to recognize it as a step in the life of the person who had polio 30 or 40 years ago. It is not treated as a new illness. PPS is a new development in a person's life for which he/she needs support to ensure adaptation in mobility, daily living skills and lifestyle changes. Therapy or rehabilitation becomes an on-going long-term process: a person checks in with the team when experiencing a change such as new weakness, pain, or mobility problems.

Nurse Practitioner: I've worked with Nancy through our county health department as a colleague who helps us care for low birthweight infants and at risk children. Her services are valuable to her rural community. She regularly visits a retired couple with three foster children, all of whom are blind and developmentally delayed. We've worked together to get services and environmental adaptations for all the citizens of our area who have disabilities and to get people connected with support groups. I have a vested interest in Nancy's health and well-being as a productive citizen of our community.

Physical Therapist: Nancy has an active lifestyle and talks frankly of her need for assistive devices and a regular exercise program. She's motivated to stay active and that's a great place to begin with a client. Mobility, strength, and endurance are three areas of functioning I can help Nancy maximize. She has concerns about the fitting and function of the leg brace. I'd like to have an orthotist re-evaluate the fit. Her body may have changed since the physiatrist first prescribed the brace; there's some reason she is not wearing it.

Occupational Therapist: Nancy's ingenuity is impressive. After 43 years, she's the expert on living with the effects of polio. New challenges come with moving to a rural area to work as an O.T. and open a bed and breakfast. With new physical symptoms of post-polio, how is she doing with pacing herself and avoiding fatigue? Wise use of time, energy, and adaptations become critical. How can we help her achieve the quality of life she hopes for in her environment?

Orthotist: People's bodies and lifestyles change. The brace ordered by the orthopedic physician may not be working out for a number of different reasons. I'd like to assess the fit and function of the brace and contact the orthopedic physician who ordered it, if necessary, before making a recommendation.

Respiratory Therapist: When breathing muscles, primarily the diaphragm, have been affected by polio, symptoms such as shortness of breath on exertion, increased pneumonia, or sleep apnea can occur. These are late effects usually of Bulbar polio or a combination of Bulbar spinal polio. In some cases, mechanical ventilation may be required. We get referrals from physiatrists when sleep apnea needs to be addressed. In Nancy's case, the polio affected her lower body but not her muscles of breathing. Still, we may be able to recommend some useful exercises.

Psychologist: Polio survivors may have different coping strategies. Those who passed as 'normal', those who 'minimized' their physical disabilities, and those who visibly were clearly 'identified' with the disabled population all have different coping experiences that may need to change. We are learning about the late effects of polio on coping strategies as we see people seeking help in later years. Those who passed as not having any disability earlier seem to have the hardest time acknowledging late effects. Those who had obvious physical effects may still deny that old ways of coping don't work as well. Identifiers may have to relinquish their struggle for physical independence and accept new forms of personal and technical assistance. Helping people develop appropriate coping strategies allows a more fulfilled life.