Joan L. Headley, Executive Director, Post-Polio Health International
Post-Polio Health International created a survey asking polio survivors about their post-polio medical care. The survey, Post-Polio Medical Care: Post-Polio Specialists and Primary Care Physicians, was posted online and a version was also published in Post-Polio Health (Volume 30, Number 2).
Data was gathered from 632 people; 496 completed the survey online and 136 copies received by mail were entered manually. Partial information was also entered.
Carol Vandenakker, MD
Physical Medicine & Rehabilitation
University of California, Davis, Health System
Presented at PHI’s 9th International Conference: Strategies for Living Well (June 2005)
A. You must start with a good primary care physician.
1. Keys to finding a good doctor:
a. Look for a physician you trust and can communicate with.
Reviewed by Nicholas S. Hill, MD, Tufts-New England Medical Center, Boston, Massachusetts
If you have a neuromuscular condition such as post-polio syndrome, ALS, or Duchenne muscular dystrophy, you may not realize that your breathing muscles are weak and can become weaker. You may have difficulty breathing in deeply enough to fully expand your lungs or coughing strongly enough to clear mucus from your lungs.
Communication is a two-way street. Participants in any relationship must have a mutual respect for the values, experiences, and skills that each brings to the encounter. Everyone is responsible for his/her own feelings, and experts recommend that feelings be expressed in the first person. Acknowledge them but do not place responsibility for them on someone else. For example, saying, “When such and such happens, I feel...” is preferable to saying, “You make me feel ….”
AN EFFECTIVE TOOL IN POST-POLIO MANAGEMENT
Mahboon ur Rahman, Peshawar, Pakistan
Brief Description of Work: Muscle power of polio-afflicted children were assisted and evaluated by Oxford Muscle Testing Chart. The chart as a diagnostic tool gives strength of muscles for the purpose of surgical interventions or physical regime.
To evaluate for post-polio syndrome, one must establish that an individual had paralytic polio and that current symptoms are due to the aftereffects of the remote polio and not due to other medical, orthopedic, or neurologic conditions. A comprehensive evaluation is done by a physician with input from members of a health care team who are experienced in the assessment and management of individuals who have neuromuscular diseases and/or functional limitations.
The criteria for diagnosing post-polio syndrome include:
Technically, post-polio syndrome is not the same condition as Post-Polio Sequelae/ the late effects of polio. Post-polio syndrome is usually considered a specific new condition. A diagnosis of exclusion is used to determine if a patient has PPS. This means if a survivor of polio is found to have osteoarthritis, for example, that is what the diagnosis will be – osteoarthritis, not PPS. Because of this, the number will be lower for post-polio syndrome than when the number is referring to post-polio sequelae or the late effects of polio.