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Postpolio Syndrome: The Second Time Around (Part 2)

Reprinted from PN March 2011

For many, the fear was over. We had beaten the odds. Some of us entered the world of "normal"—or so we thought.

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The nightmare of the polio epidemic of the 1940s and 1950s in America robbed young people of lives and limbs. Now in midlife or senior years, some polio survivors are experiencing new physical symptoms of pain, dramatic energy loss, or debilitating fatigue. Today there is no vaccine rescue, no miracle drug, and no high-priority research to give hope to those with postpolio syndrome (PPS).

Dirty Tricks


The world outside is often an obstacle course for people with postpolio syndrome. Charlotte is thankful for ramped access in many places.

Panic subsided in America as science came to the rescue with life-saving vaccines. But there are no preventative measures against the ravages of an old affliction. As in the Ironman Triathlon, you must first qualify in a similar competition. Many of us qualified for round two (PPS) by surviving round one (polio).

Of the 750,000 polio survivors in the U.S., 30% are now facing round two of their childhood curse. The unspoken mantra of most walking survivors is, "Anything but the wheelchair." To postpone this fate, we dragged our reluctant bodies up flights of stairs or walked blocks or miles to prove we could compete. All the while, we overdrew our account of banked energy. We moved from polio to PPS.

People with PPS live in an exclusive society, a private club that has strict entry requirements: You must first have had paralytic polio. Thirty to fifty years later, polio is striking again in the form of recurring muscle weakness, intense fatigue, and new joint pain. Although PPS was well documented in The Polio Paradox in 2002 by Richard Bruno, healthcare professionals often avoid the label. Some doubt the category as a legitimate entity, while others dismiss PPS as the normal aches and pains of aging. PPS medical "specialists" are rare.

PPS is technically not a disease with a viral or bacterial cause but is the result of the toll taken on an already compromised neurological system. There is no definitive diagnosis but rather a diagnosis by exclusion. In the Handbook on the Late Effects of Poliomyelitis (1999), Maynard and Headley cite the common denominators:
— A prior paralytic polio episode
— A mid-life period of relative neurologic stability
— A gradual or sudden onset of new distressing symptoms in mid-life

Deterioration of motor neurons creates overall weakness and crushing fatigue, while a lifetime of compensation results in muscle and joint pain—for many, a daily companion.

We are x-rayed, CAT-scanned, and MRI-ed to find the culprit, but it is the same destroyer we met years before. Our new inconveniences are badly timed as mid-life often brings other nuisances such as divorce, retirement, mortgages, loss of a spouse, and age-related illnesses. The harsh news is, no clinical tests are conclusive, the situation is not reversible, and there are no life-changing medications or Sister Kenny reincarnations. There is no cure!

Read more in the March 2011 issue of PN.

 

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Postpolio Syndrome: The Second Time Around (Part 2)

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