In 1953, when most other 11 year-old girls were jumping rope and playing with dolls. Joanne Hunt was lying in a San Diego hospital bed with polio, completely paralyzed for six terrifying weeks. Doctors predicted she would not walk, complete school or ever have children.
Nine months later, Hunt left the hospital, walking with the assistance of two long-leg braces and crutches. She went to high school even to school dances, where her friends showed boys how to hold her steady when they danced. She graduated. married and had three children.
She had beat polio-or so she thought.
Four years ago, Hunt, now 53, began to get extremely tired. She went from full-time work to a part time position, but that still exhausted her, so she stopped working altogether. She could no longer make her daily one-mile walk on the beach. Her right shoulder was in constant pain, and she needed a brace on her right leg for the first time since she was 14.
Nearly two years of personal research and doctors visits finally revealed the unbelievable explanation: It was polio again. Not the dis ease itself, but definitely related. The same capricious disease that struck her youth was exacting a new and devastating toll 40 years later.
Hunt’s condition is known as post-polio syndrome, and it is affecting perhaps hundreds of thousands of polio survivors in the United States. There are more than 300 post-polio support groups around the country, and post-polio chat groups have sprung up on the Internet.
Like Hunt, these people had put the pain, fear, physical disabilities and social stigma of polio behind them-only to find that their struggle with polio is not over. Little wonder then that many feel somehow “marked” as a victim-not just once, but twice-of the crippling disease.
“I thought, ‘This isn’t fair that I have to deal with this again-I’ve says already been through this,’ Hunt, now 53. “I’m having a harder time dealing with the post-polio limitations than I did (with polio) as a child or even as a young mother. Now it’s not necessarily a challenge like it was then. It’s a big drag.’’
But it’s not hopeless. New understanding of the emotional and physical tolls of the disease, as well as advances in bracing technologies and materials, are making it possible for those with PPS to deal with their fears, adapt to new limitations, obtain necessary medical equipment and procedures and still lead full lives.
“I’m always telling patients that different doesn’t mean bad,” says Loren Saxton, a certified orthotist and prosthetist in San Diego who specializes in fitting braces for people with post-polio.
Conservative estimates by the International Polio Network indicate that some 40-60 percent of the estimated 650,000 survivors of paralytic polio have or will experience post-polio syndrome. PPS, as it is known. describes a common cluster of symptoms-usually pain, fatigue, new weakness-seen over and over again, mostly in individuals who recovered from paralytic polio.
Though there is still some debate about what constitutes post-polio syndrome (PPS), Dr. Lauro Halstead’s 1987 definition of the syndrome is the most commonly accepted. His five elements to a PPS diagnosis are:
1. a history of paralytic polio (though some report PPS cases among those with non-paralytic polio)
2. a fair to good recovery
3. a period of functional stability (anywhere from 10 to 40 years)
4. onset of new weakness (a critical component to the diagnosis)
5. exclusion of other causes for the new weakness.
“It’s hard to believe, but this syndrome, as we’ve been calling it and defining it, has been around for more than 10 years, says Halstead, director of the post-polio program at the National Rehabilitation Hospital in Washington, D.C., and a polio running survivor himself. “We’re in its second decade.”
Yet, despite the press given to this condition, PPS is not widely known. The phenomenon first began generating attention in the early 1980s, as polio survivors began reporting symptoms. But like polio itself, PPS symptoms vary widely from person to person, so that no one person will have the same exact symptom picture. That can make it difficult to diagnose. Indeed, some are still being misdiagnosed or told it’s all in their heads.
That’s what happened to Bob Thayer for eight years. Thayer, then living in Indiana, visited doctor after doctor to figure out what was behind the extreme exhaustion that had hospitalized him three times and contributed to his totaling the family van when he couldn’t stay awake. One doctor ruled out stroke, another put him on antidepressants, but most just told him he was making it up.
Thayer, a medical machinery salesman, had to become the expert. He took his research to his family doctor, who sifted through how in it until he was convinced: Thayer’s minor bout with polio in 1945 (one weak leg became slightly shorter and smaller) had returned to haunt him in a major way. Still. Thayer says, the diagnosis wasn’t iron-clad until late 1990, a full 10 years after Thayer first began experiencing the symptoms.
Doctors are not sure why limbs and individual muscles that seemed to work fine for 20-40 years-with or without assistance will suddenly give out. One contributing factor on which they all agree is that the muscles required to work overtime to compensate for atrophy or partial paralysis are worn out.
“I think the overwork theory is as good as any, Halstead says, “It’s like a 6-cylinder car that has been running on two or three cylinders for 20 or 30 years. Eventually, the metal corrodes, the engine fatigues, it doesn’t have the pep and energy.”
And yet the overwork theory doesn’t apply to everyone. Plenty of polio survivors including those who have used braces and crutches for years are not coming down with PPS. Nor do researchers have a good picture of how to stop the nerve and muscle degeneration or how to regenerate them, if at all.
“We still don’t know what the weak link is in the chain,” Halstead says.
Researchers are fairly certain who is most susceptible to PPS: those who had moderate to severe cases of polio and recovered at least partial functioning of the affected areas. People like Lorenzo Milam.
Milam was in a wheelchair for two years after polio left him paralyzed from the chest down at age 18. He regained partial movement of his legs, walking with the aid of braces and crutches. The self-made iconoclast went on to make a fortune on FM radio stations in the 1960s and 1970s. He wrote and self-published books and a highly praised literary magazine. And he walked more than most “crutchless” people..
“I used to walk five to 10 miles a day on crutches,” Milam says from his San Diego home. “I didn’t have to walk 10 miles a day, but I was, showing off…. I was trying to show, Hey. I’m really not disabled.”
Milam pushed himself to maxi mum capacity to prove that his limitations couldn’t slow him down. He says he learned, as did other survivors, to disregard the messages of the body, to force weak limbs beyond their limits of endurance.
By 1977, when Milam was 44 years old, the 10-mile walks were becoming harder and harder. Simply standing was a strain.
“I thought it was just because I liked beer and was overweight,” Milam says. “But it wasn’t.”
The vision of himself back in a wheelchair, where he’d begun his experience with polio, pushed Milam into a yearlong mental breakdown in 1977.
“I was pretending I was something I wasn’t-not dis abled,” says Milam, whose most recent book is titled “Crip Zen: A Manual for Survival. “It took me 25 years to come to the knowledge that I was very different.”
Milam’s experience is not unusual for people with post-polio. Most polio survivors succeeded in minimizing the appearance of dis ability, maximizing independence and “disappearing” into society, says Nancy Frick, a counselor and post-polio researcher from Hackensack, NJ. They did so mostly to forge a distance between their current lives and their emotionally devastating experience of polio.
If you had polio, you were shunned, abused, treated as the pariah of the neighborhood,” she says. “Some people even walked to the other side of the street to avoid a house in which someone had had polio… So it wasn’t something you told people about if you could avoid it.
What survivors did was become as “normal” as they could, says Frick, herself a polio survivor. Her research suggests that polio survivors not only achieved but sur passed “normalcy.” Polio survivors responding to a 1985 and 1990 national survey reported more years of formal education compared with the general disabled and non-dis- abled populations, she says. Employment levels are high. as well, and a larger proportion of them are married.
But many of them did so by adopting a stress-prone, overachieving, never-say can’t, Type A behavior as a response to their experience of polio, Frick says. Her research via the polio surveys concludes that this behavior not only contributes to the development of PPS through the overuse or misuse of weak limbs, but also prevents people from making the lifestyle changes necessary to treat their PPS.
Saxton, the San Diego orthotist who designs braces for people with post-polio, recalls a patient who threw a fit-cursing and insulting Saxton’s bracing recommendation- and stormed out of the office. The patient returned three months later and apologetically accepted a new brace.
“If they’re not through their denial period, I probably can’t help them,” Saxton says. “I’m not going to paint them a rosy picture when there are no blooms out there.”
Typically, people with PPS will initially deny that anything is wrong with them, Frick says. She knows; she’s been there. But eventually, something will happen that can no longer be ignored.
Frick refused for a long time to check out her stronger leg, which had been spasming and losing strength. One evening in 1982, she went to have dinner at a friend’s house, something she’d been doing regularly for eight years. This time, however, Frick couldn’t climb the stairs to her friend’s apartment. She was just too weak.
Rather than return to her own house or ask for help, Frick crawled up the stairs.
“I was terrified when I got home,” she says. “I thought, I’m never leaving my home again. I had no idea what was going on. It didn’t cross my mind for a second that it had anything to do with polio.”
Frick continued to put off seeking treatment until her right arm, her stronger arm, became so filled with pain and weakness that she couldn’t turn a doorknob. The physician she saw recommended surgery or rest. She opted for a motorized wheel- chair rather than the manual one she’d always used, and she stopped walking altogether. Though some wouldn’t see that as a victory, within six weeks, Frick’s arm and leg had stopped hurting.
“I saw it as a victory,” she says. “And I encourage others to see it that way as well. See, it’s quality of life that counts, not the way you look.”
The onset of PPS brings with it more than just a physical lifestyle adjustment, Frick says, and that’s why people avoid seeking treatment. It tends to bring survivors face to face with their original polio experience with all the long-suppressed and powerful feelings of fear, abandonment, rejection, abuse. yearning and so on. Depression is common.
Most people with post-polio report that this emotional work is the most difficult part of dealing with PPS. That’s why Frick recommends that a therapist be on their medical team. Without doing that critical “inner work,” people often will post pone or cancel seeking help at all.
Fortunately, there are treatments that offer help.
Treatment programs for post-polio syndrome are as individual as the person afflicted. Bob Thayer, for example, takes pain medication and uses a CPAP machine (Continuous Positive Airway Pressure) at night to help him sleep. He also takes lots of naps. Other programs will focus on pain relief and/or physical therapy. Exercise is cautiously recommended, as long as it protects fatigued muscles and joints, and is monitored. Swimming in a therapeutic heated pool is considered one of the best.
One often critical component of a treatment plan is updated bracing. Advancing muscle weakness in the PPS patient requires just the right combination of support, flexibility and light weight to make the most of the remaining muscle strength, says Saxton, a cofounder of Southern California Orthotics and Prosthetics in San Diego.
The heavy steel and leather braces of 30 years ago have given way to materials such as carbon fiber, acrylic resins and aircraft aluminum, Saxton says. These hi-tech materials provide a better and more stable fit, and are significantly more lightweight. Saxton also uses test sockets, used for years in fitting prosthetics, to custom-mold braces for maximum comfort and function.
Sometimes, a hi-tech bracing system using lightweight materials is all that is needed to give improved mobility to a person with PPS, whether replacing an old bracing system or acquiring first-time braces, Saxton says. Other times,
new braces are only part of the solution. He recalls refitting lighter weight braces for one man who thought the new braces were great once he was standing. Trouble was, he couldn’t get out of his chair.
Some patients will focus on the new brace as the “cure” to their advancing muscular weakness. Saxton says. It’s not always the answer.
“They think. If I get a new one, then I’ll be able to walk like when I was 20,” he says.
Because he had polio, wears a brace and has some post-polio symptoms, Saxton knows how utterly consuming the quest to continue walking can be for some people. That’s one reason people with PPS come to Saxton: he knows what it’s like to depend on braces for stability.
“I’ve had people sit in the chair in front of me and cry out of frustration men and women,” he says.
Saxton says his own way of handling the new weakness in his Stronger right leg was to obtain handicapped car plates a few years ago. Energy conservation is the key.
Known as “pacing” in the post-polio world, this energy conservation is what makes the biggest difference in the lives of those with post-polio.
“Slow down, lay off and make some more realistic expectations, says Dr. Frederick Maynard, director of Physical Medicine and Rehabilitation at Metro Health Center in Cleveland. “Stop trying to do what you used to do 10 to 20 years ago.
Though pacing may sound obvious, it can be a big challenge to those with ingrained Type A behavior. It can also be a huge benefit. Research by Dr. James Agre, professor and chair of the Department of Rehabilitation Medicine at the University of Wisconsin, shows that post-polio patients who take rest breaks can do as much work or more (than without rest breaks) with less fatigue and greater recovery time.
Thayer’s version of pacing is this: “I do what I want to do if I feel like I want to do it and I don’t make excuses to anyone.” He and his wife sold their house in Indiana. downsized and retired early to Mississippi. He says he’s ready to buy a motorized scooter to get him around grocery stores and the mall. Thayer’s marching orders from his doctor are: “Ride instead of walk, sit instead of stand, and when you get tired, lie down.”
Lorenzo Milam also stopped trying to do everything himself. He uses a wheelchair almost exclusively, and lives in southern Mexico more than half the year. There, Milam says he can hire 10 people to provide various forms of assistance for the price of one in the United States.
“I never would have permitted that kind of help before, and, therefore, I denied myself many things,” Milam says.
Learning to pace oneself requires just that kind of creativity, Maynard says.
“It’s out of true creativity that you discover the optimal adaptation for you,” he says.
Joanne Hunt thinks that the same positive outlook that got her from paralyzed in a hospital bed to school dances will see her through the anger, depression and difficulties of PPS. She has a sign tacked to her refrigerator reminding her that she cannot change her past or present but that only she can decide what to think about it.
“It always comes back to this, Hunt says, “Your attitude is what’s going to make the difference.”