Despite access to renowned medical care, a Chicago-area doctor and 61-year-old chief medical officer could not find an explanation for the recent onset of extreme fatigue, lower extremity weakness and frequent falls. He also found no relief for the difficulty he had while speaking and swallowing. To compound the situation, he wasn't sleeping well at night.

The doctor gained hope when a neurologist diagnosed him with Post-Polio Syndrome, PPS, but was disappointed that his doctor had little information about the disease and its treatment. The neurologist suggested the patient, who had contracted polio in Little Rock, Ark., in 1952 at the age of 14, retire so that he could spend most of his time resting. According to his doctor, the condition inevitably would worsen and he would need to use a wheelchair.

While this patient heeded the advice about taking time off from work, he did not give up. Internet research led him to Julie K. Silver, M.D., a leading expert on PPS. He contacted the International Rehabilitation Center for Polio ,IRCP, a specialty program at the Spaulding-Framingham Outpatient Center in Framingham, where Silver is medical director and, along with Dr. Chiachen Hsu, a treating physician for polio survivors. When the patient arrived for his three-day evaluation, he described his life as a "rapid downward spiral" and looked much older than a healthy 61-year-old.

His visit to the IRCP consisted of appointments with Polio Team's physician, physical, occupation, and speech-language therapists; orthotists (brace makers); and a pulmonologist. He also underwent a sleep evaluation and various medical tests to confirm the diagnosis of Post-Polio Syndrome. After only three days, the patient returned home with a clearer understanding of his condition and tools to control it.

The multi-disciplinary team fitted the patient with a new brace, instructed him in strengthening exercises, demonstrated energy-conserving tips to reduce fatigue, and suggested a voice-amplification device for public speaking. Six months later, a more vital patient returned for a follow-up, exhibiting an improvement in gait and reporting that he was not falling anymore. Thanks to the new exercises and energy conservation techniques he had implemented, his fatigue was reduced and he had been able to return to work on a modified schedule. He reported an improvement in his comfort and function for the first time in the almost two years since he started having difficulty.

What is PPS?

Post-Polio Syndrome, also known as the late effects of polio or post polio sequelae, is characterized by new symptoms that occur in people with a history of paralytic polio after a long period of stability in which the strength they had remained unchanged.

PPS affects approximately 70 percent of polio survivors and does so anywhere from 20 to 40 years after the initial polio episode. The hallmark of PPS is new weakness. Other symptoms may include unaccustomed fatigue, pain, swallowing problems, breathing problems, cold intolerance and new muscle atrophy.

The cause of PPS is not clearly understood. Two prevailing theories exist. One theory suggests the normal muscle loss that accompanies aging is the cause of PPS. This explains the lag time between the onset of polio and the onset of PPS. The other theory is that PPS is caused by the repeated overuse of muscle groups. In either case, muscle groups not previously known to have been affected by polio are weakened. It is the new weakness that is the hallmark of PPS. For example, a polio survivor who has always known she had a "bad leg" may find that her arms are "newly" affected by PPS. Whether the new arm problems are a result of undetected muscle damage that occurred at the time of the original polio or newer damage resulting from the over use of the remaining "good" muscles, or a combination of the two, is not clearly understood.

PPS is frequently devastating for polio survivors. Many of them thought the "worst was over," having triumphed over their initial polio and/or come to terms with the disabilities they were left with so many years ago. Others are terrified to think that the polio is "coming back" to haunt them. These emotional issues are frequently made even harder by a medical system that, due to lack of training about PPS, either attributes the symptoms to other conditions, dismisses the symptoms as normal aging, or gives the patient misinformation about PPS.

The good news for polio survivors is that help is available. The best form of help comes from a clinic offering a multidisciplinary team approach. A polio doctor working with physical and occupational therapists, orthotists and other polio specialists can do a lot for a person with PPS. From helping with pain relief, to prescribing appropriate exercises, recommending a new, lighter brace or other assistive devices, confirming the PPS diagnosis, introducing ways to combat fatigue and prevent further disability and much more.

For more information about Post-Polio Syndrome, visit the IRCP Web site (www.polioclinic.org) or call the International Rehabilitation Center for Polio (IRCP) at Spaulding-Framingham at 508-872-2200.
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