Two generations ago, infantile paralysis was the scariest disease in the United States. Then a tough minded, tough talking Australian nurse named Sister Elizabeth Kenny arrived in this country with a radically different kind of treatment that saved thousands in Seattle and throughout the United States from much of polio’s crippling aftereffects.

Colleen Long of Seattle, a writer, poet and retired teacher, is eternally grateful. In 1943, when she was 10 years old, Colleen was completely crippled by the disease. Then began the grueling Kenny treatment of extremely hot wool wraps followed by exercise and muscle movement, the exact opposite of conventional treatment. Like everyone else who had them, Colleen has a vivid memory of the pain and agony of the hot packs. But even more vivid is her memory of the successful treatment. “Mine is a miracle story thanks to an Australian nurse…and the fact that I lived where there was a progressive hospital, Children’s, using her treatment.

“As time went on, I could move more and more,” she wrote in a memoir. “Soon I was able to eat my meals sitting up… One wonderful day I shall never forget, I stood all by myself with no help from anyone. The doctor said it was a miracle.” Her mother continued the treatments at home, and within a few months, Colleen was walking normally and back in school.

John Clark of Spanaway has a similar story. He was stricken in 1946 in Minneapolis when he was five and immediately began the Kenny treatment. He even saw the famous lady. “She came by and pounded on me a couple of times,” he recalled. At first, John was completely paralyzed. “My arms came back first.” He spent 18 months in Sheltering Arms Hospital, getting the hot packs and exercises every day. By the time he was seven, he was able to walk with a brace on one leg and using forearm crutches. He, too, went on to a successful life as a teacher-30 years in the Kent School District and seven more in a private school.

Before Sister Kenny, traditional treatment called for immobilizing the affected limbs, which nearly guaranteed permanent crippling. Sister Kenny, who developed her methods as an outback nurse to aboriginals and isolated farm children in Australia, came to this country in 1940 with all the fervor of an evangelist to show American medicine a better way.

Grudgingly at first, then enthusiastically, doctors began using her revolutionary methods with the same remarkable success that she had achieved in Australia. Minneapolis was the first Kenny polio center in the United States. In 1942, Seattle Children’s Orthopedic Hospital (now Children’s Hospital), sent a doctor, a nurse and a physiotherapist to Minneapolis to learn the new techniques. Seattle was one of the first areas in the U.S. to benefit from the Kenny treatment.

Thanks to the Kenny treatment, thousands upon thousands, mainly children, were spared a lifetime as cripples. Older victims, like Franklin D. Roosevelt and Lionel Barrymore, never walked after they were stricken.

Now, with polio almost eradicated in the U.S., Sister Kenny is largely forgotten, but back in those days she was an international celebrity, guest of President Roosevelt and feted by Congress.

Unfortunately, this is not a “lived happily ever after” story. Colleen and John, and many thousands of other polio survivors, are now struggling with a totally unexpected problem which has come to be known as post-polio syndrome. Half or more of all polio victims, not just those treated with the Kenny method, have contracted post-polio syndrome many years after they first became ill. As John describes it:

“Fourteen years ago, post-polio hit me like a bomb while I was teaching.” He was able to continue teaching in a wheelchair for a while, but the growing crippling eventually forced him into retirement. He is now on oxygen 24 hours a day but continues to lead a full life with the help of his wife, Vivian.

Colleen has not been hit as hard. She walks normally, but she can no longer stand or hold up her arms for any length of time, and tires easily. Because she doesn’t look disabled, she finds herself having to explain her growing physical limitations. It’s a problem she shares with many disabled people.

John’s wife, Vivian, represents another aspect of this largely unknown problem. Vivian was a student at Franklin High School in Seattle in 1954-ironically, just before polio vaccine became widely available-when her best friend came down with bulbar polio. Several months later, Vivian developed severe headaches and fatigue, and a high fever. She got over it without further problems and never connected it to polio until the late 1980s when she came down with severe chronic fatigue, leg pains, muscle fatigue, chronic pain and headaches. She consulted a rheumatologist who said she had fibromyalgia and handed her a brochure of the symptoms. The first symptom listed was severe chronic fatigue, the second was “Did you ever have polio?” The rest of the symptoms were similar to the late effects of polio. It was only then that she made the connection to her friend’s 1954 illness.

“I’d been brushed by it and never knew. Many thousands of us have the same problem. We never knew we had polio, but the muscle and nerve damage lingered in our systems and erupted later in life.”

Polio survivors have not taken this new onslaught lightly. There is an international network of polio support groups meeting to share problems, discuss treatments, and lend aid and comfort wherever they can. Washington State alone has 15 support groups. Vivian Clark writes a quarterly newsletter, Polio Outreach of Washington, and with John serves as the central contact point for people seeking information. The phone number is 1-800-609-5538.

Though this post-polio scourge has been known to medicine for a number of years, it is almost unknown to the public. With development of the Salk vaccine in 1955 and the Sabin vaccine in 1962, the disease has been largely eradicated and forgotten in this country. What was not anticipated was the long-term impairment of muscles and nerves which, as polio patients grew older, undermined their bodies. It is not believed that post-polio victims still carry the virus. Doctors believe post-polio syndrome adds as much as 15 years to the victim’s chronological age in terms of physical decline, although they do not think it shortens lives.

Little can be done for this problem except to get plenty of rest and good nutrition and use pain control when required. Post-polio meetings help too-sharing, supporting and learning.

Despite their post polio symptoms, Colleen, John and thousands more continue to be grateful to that tough talking nurse, Sister Elizabeth Kenny.

This article appeared in the June 2008 issue of Northwest Prime Time, the Puget Sound region’s monthly publication celebrating life after 50.