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Although the Post-Polio Task Force disbanded in 1999 because the research was concluded, the information that was developed for this section of the PHI website remains relevant to this date.

Highlights of 1997 Roundtable Meetings

Quality of Life Improves with Post-Polio Self-Care

Promotion of the concept of self-care can help to optimize wellness in patients with post-polio syndrome (PPS), according to Joan L. Headley, Executive Director of the International Polio Network, Saint Louis, Missouri. "In the absence of a cure, polio survivors experiencing PPS should focus on care - medical, psychological, social and spiritual," she said. "Good care can improve the quality of life for polio survivors and is most likely to happen when a patient and practitioner work in partnership."

To establish such a partnership, she said, it may be helpful for the physician to recognize differences between the "medical approach" and the "independent-living approach" to the management of PPS. The medical approach is oriented towards the professional; it emphasizes the illness, and focuses on the treatment of symptoms and the need to find a cure. The independent-living approach is patient and family centered; it promotes a sense of health and well-being and encourages patients to take responsibility for their role in the decision-making process.

"Physicians can validate polio survivors by listening to them and acknowledging that what they are experiencing is real, treating them with empathy while drawing upon their medical and diagnostic repertoire," Ms. Headley advised. "By working together as partners, physicians and polio survivors can develop options, choose strategies, and implement changes."

Strategies Reviewed

When coping strategies are directed toward symptoms and attempts to maintain previous activity levels, patients tend to feel more helpless, depressed, and angry, Ms. Headley explained, citing a study by Westbrook et al. According to that 1996 study of polio survivors, helpful personal strategies include:

The ability to ask family and friends for assistance is particularly important, and interaction with other polio survivors in support groups can be beneficial.

Lifestyle changes that PPS patients have found especially beneficial include the employment of household help, the acquisition of special equipment and furniture, and making modifications in the layout of the home.

Complementary Treatment Explored

Dorothy Woods Smith, RN, PhD, Associate Professor at the University of Southern Maine College of Nursing, Portland, pointed out that debilitating pain and fatigue may persist even after PPS has been treated with surgery, pharmacologic therapy and assistive devices. Ideally, she said, the physician should consider expanding the treatment plan to include complementary therapies aimed at lessening fatigue, relieving pain, reducing distress and improving the quality of life.

Of particular interest are self-care techniques for eliciting a relaxation response, Dr. Woods Smith observed. Such methods include meditation, progressive muscle relaxation and some yoga practices. In a study relevant to polio survivors conducted at the Harvard-New England Deaconess Mind/Body Medical Institute Pain Program, Margaret Caudill, MD, PhD, demonstrated that regular elicitation of the relaxation response resulted in an increase in activity, and decreases in pain severity, anxiety, depression and anger. In the first year after completing the relaxation program, patients had 36% fewer visits to their managed care facility.

Dr. Woods Smith recommended that physicians ask patients whether they are already using alternative therapies. In a 1993 report by David Eisenberg, MD, and colleagues at Beth Israel Hospital and Harvard Medical School, 61 million Americans were estimated to be using some form of unconventional medicine. The most commonly reported therapies were acupuncture, relaxation techniques and participation in self-help groups. The vast majority of individuals - 72% - had not told their physicians about using these modalities.

"Most of these therapies have been reported by at least some polio survivors as helpful in reducing stress, pain, fatigue or psychological distress," she said. She acknowledged, however, that (with the rapid proliferation of new therapies), "it is often difficult to distinguish the authentic from the exploitative." Reliable information can be obtained from sources such as the Office of Alternative Medicine at the National Institutes of Health; the American Holistic Medical Association; or Alternative and Complementary Medicine, a journal edited by physicians, Dr. Woods Smith noted.

"Ideally, physicians and polio survivors participating in partnerships with one another and with other health care providers will integrate the art and the science of medicine to offer the widest possible range of choices for healing," she concluded.

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