POLIO T’N'T: Tips and Techniques for Polio Survivors (and anyone with a disability)

by Richard L. Bruno

You may be asking why there’s a new column in Action about polio, a terrifying disease of the twentieth century that was cured when a vaccine was developed in 1955. The poliovirus, which caused muscle weakness, paralysis and death, is gone, you may say.

Unfortunately, the vaccine didn’t cure polio. And, the poliovirus is far from gone. The virus is alive today and paralyzing children and adults in Pakistan, Afghanistan, India and Nigeria despite a decades-long international vaccination effort. What’s more, 10 African and Asian nations that had been polio-free, thanks to vaccination, have had the virus reintroduced when irrational fear of the American-made vaccine halted its use. There are 20 million polio survivors worldwide, and the poliovirus is making more each day.

Closer to home, polio has returned to the US. Five unvaccinated Minnesota children and one Arizona adult caught polio in the past two years after coming in contact with someone importing poliovirus from outside the U.S. The Centers for Disease Control recently reported decreased polio vaccination among U.S. toddlers in 20 states and 10 large cities-the largest decreases in border states and ports of entry like New York, Philadelphia, Houston and Seattle-and that there are a million U.S. children not vaccinated against polio. American’s next polio epidemic may be just a car, boat or plane-ride away.

But, there can’t be many living American survivors of the polio epidemics of the 1940s and 1950s, you may think. And, if there are a few polio survivors left, they must all be in their 90s. You may be surprised to discover that there are nearly two million living North American polio survivors. That’s more than all the folk with spinal cord injuries, amputations and multiple sclerosis combined. And, the average age of the patients we treat at The Post-Polio Institute is only 58.

So, the poliovirus is still among us, as are millions of polio survivors who unfortunately have developed new problems as they reach mid-life. As you may have read in Kelly Rouba’s article in last month’s Action (“The Return of Polio”), survivors have developed post-polio sequelae (PPS), the “sequel” to having had polio. PPS are the unexpected and often disabling symptoms-overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold intolerance, and difficulty swallowing and breathing-that occurs in 75% of paralytic and 40% of non-paralytic polio survivors about 35 years after the poliovirus attack.

If you didn’t have polio, why is PPS important? PPS isn’t the result of the poliovirus hiding for 50 years and coming back to cause polio again. Nor is PPS a new neurological condition, like Lou Gehrig’s Disease. Post-Polio Sequelae result from remaining poliovirus-damaged nerves wearing out and dying, and continually stressed muscles and joints hurting, as the result of decades of “overuse abuse.”

Anyone who has a long-term physical disability and has been walking on crutches or pushing a wheelchair for decades, can develop symptoms similar to PPS. Paras and quads, those with cerebral palsy, spina bifida and Guillain-Barré Syndrome develop fatigue, muscle weakness, and muscle and joint pain that look just like PPS. And, these folk, just like polio survivors, are told that their symptoms are either “in their heads” or the “normal” effect of aging, not the result off overuse abuse.

Just like polio survivors, those with other disabilities are loath to “give in” to using braces, canes, crutches, walkers, or wheelchairs until it becomes “absolutely necessary,” where “absolutely necessary” means that they can’t walk at all.

Not only polio survivors, but everyone who has a long-term disability, can benefit from the experience of polio survivors who have learned the hard way that “using” leads to “losing” and that preventing more and more disabling symptoms, loss of functioning, of independence and even of one’s livelihood, can be prevented by learning to “conserve to preserve.”

So whether you’re a polio survivor or are surviving with another disability, stop by T’N'T on your way through Action. I promise to include a nugget that will apply to everyone, from clues for getting Social Security Disability, to the do’s and don’ts of exercise, to the benefi cial and harmful effects of drugs. If there’s a tip or technique you’d like to know about, just e-mail me. My inbox is always open.

Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-Book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program, is available through PostPolioInfo@aol.com.