Shared peer advice from polio survivors about what works for them.

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News about people who have made significant contributions to the disability community.

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Hospitalization, Emergency

Brian Tiburzi

Emergency hospitalization for polio survivors with respiratory insufficiency is often complicated by the lack of experience of paramedics and emergency room staff with people with respiratory muscle paralysis. Respiratory equipment, such as cuirasses, pneumobelts, iron lungs, and many of the older ventilators may be viewed by them as quaint artifacts of a past era. Portable volume ventilators and bi-level pressure …

Hospitalization

Brian Tiburzi

Being in the hospital can be a frightening experience for anyone. For polio survivors, planning in advance for hospitalizations and unforeseen emergencies is especially important. A person who has lived with a significant disability for a long time is frequently the most qualified in managing his/her own needs for functioning and general day-to-day care. Hospital personnel should respect this expertise …

Gastrointestinal Tract Dysfunction

Brian Tiburzi

Abnormal motility of the smooth muscle that comprises the walls of the gastrointestinal (GI) tract (mouth, throat, esophagus, stomach, small and large intestines, and rectum) can cause a variety of symptoms, corresponding to the section involved. Gastrointestinal symptoms are commonly reported by polio survivors with one survey of 705 reporting 31% choking or dysphagia, 51% heartburn, 27% nausea, 46% constipation …

Frog Breathing

Brian Tiburzi

Frog breathing, the common term for glossopharyngeal breathing (GPB), is an acquired skill which can be used to produce adequate ventilation for lengthy periods of time even when there is total paralysis of the respiratory muscles (Dail et al., 1955). Frog breathing uses the muscles of the tongue (genioglossus) and the throat (pharynx) to force air into the trachea and …

Foot and Leg Swelling

Brian Tiburzi

Swelling of the feet, ankles and lower legs is common among aging polio survivors. When indentation marks are left after a finger is pressed hard for several seconds against the skin, it is called “edema.” It results from fluid accumulation due to insufficient pumping action of calf muscles on blood in the leg veins to return it to the heart. …

Fibromyalgia

Brian Tiburzi

Fibromyalgia is a musculoskeletal disorder with some symptoms similar to those of the late effects of polio. Individuals with fibromyalgia have a history of chronic, generalized pain, throughout the body or at multiple sites. Other common associated symptoms are nonrestorative sleep, fatigue, morning stiffness, difficulty concentrating or thinking clearly and certain gastrointestinal difficulties. The exact cause of fibromyalgia is unknown, …

Fatigue

Brian Tiburzi

Unaccustomed or disabling fatigue is one of the most common symptoms expressed by polio survivors and occurs for multiple reasons. Some polio survivors describe fatigue as a decrease in stamina, in endurance, and in the ability to perform repetitive actions (rapid muscle fatigability), either measured in ambulatory distance or in the performance of upper extremity tasks. Others report a more …

Exercise

Brian Tiburzi

Muscle stretching and joint range-of-motion exercises are important whenever there is muscle weakness. Muscle/ligament/tendon tightness should be carefully evaluated because sometimes tightness can provide support for joints that otherwise would be unstable. In other circumstances, preventing tightness, where muscles are weak, can be important to maximize function. Preventing or stretching out tightness is particularly important in the chest wall and …

Evaluation

Brian Tiburzi

To evaluate for post-polio syndrome, one must establish that an individual had paralytic polio (see Poliomyelitis, Acute) 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 …

Ergonomics

Brian Tiburzi

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 …