Perhaps the saddest irony in Holly Donohue`s life is that her hard work to explain the predicament of those suffering from the late effects of polio is helping everyone but her. Rest, you see, is the most frequently prescribed therapy for former polio patients now suffering from new, debilitating weakness decades after the disease supposedly had left them.
For Donohue, who contracted polio 32 years ago, there is no time to relax. The 48-year-old Waukegan housewife, her body stooped from back pain, her atrophying right leg supported by a cane, wages a furious and time-consuming public awareness campaign informing people of the nature and extent of the late effects of polio, sometimes called postpolio syndrome.
The symptoms are unaccustomed fatigue, joint and/or muscle pain, muscle weakness or loss of muscle use, and respiratory problems. Donohue insists these problems are not, as some skeptical doctors suggest, an outgrowth of the normal aging process.
”I know a man in his 50s who was working and healthy in 1980,” she says. ”Today, he wears two leg braces, sometimes uses a wheelchair and has had to use an oxygenator at night to help him breathe. Am I supposed to tell people this is a normal aging process?
”A doctor told me, `When I read it in the New England Journal of Medicine, I`ll believe it,` ” she continues. ”The nightmare is bigger now than it was in the 1930s or 1940s. Then, you had doctors who knew about polio and cared. Now, they say you`re crazy.”
Donohue, who until a few years ago walked upright without a cane, is mad, but she`s not crazy. A growing number of researchers around the country recognize that something unique is happening inside the bodies of some former polio patients.
At greatest risk, they say, are people who had the most severe cases
–paralysis in all four limbs, respiratory difficulties requiring mechanical breathing devices–and those who contracted the disease after age 10. Furthermore, Donohue and others involved in support groups have encountered symptoms among victims whose initial bout with the disease was relatively mild.
The late effects of polio develop slowly; symptoms are most evident 30 to 40 years after the disease has passed. For years there have been sporadic reports of postpolio problems, but the numbers have surged dramatically in the last few years. ”Part of that is due to publicity,” says Dr. Burk Jubelt, associate professor of neurology at Northwestern University. ”But there`s no doubt that hundreds of new cases are occurring because the biggest polio epidemics were in the late `40s and early `50s. We`re at the time when those people would be affected.”
Nevertheless, says Dr. Neil Cashman, who directs the University of Chicago`s four-month-old postpolio clinic, ”the medical community has had a hard time acknowledging it (postpolio syndrome).” The U. of C. clinic has a six-month waiting list of patients who want to be examined. A recent postpolio seminar at the university attracted 200.
”We saw more people at that seminar than we see in a year in our clinic for ALS (amyotrophic lateral sclerosis, or Lou Gehrig`s disease),” says Dr. Jack Antel, professor of neurology.
Though interest runs high, there is no consensus on how widespread the problem is. Estimates of the number of polio victims expected to experience late effects range from 60,000 to 125,000. But skeptics persist. Dr. Albert Sabin, who developed the oral vaccine that helped end the original polio threat, believes the numbers are overblown.
”I think the syndrome has to be limited to people who had polio at one time and now have developed new or increased paralysis,” he says. ”Numbers like (60,000 to 125,000) are out of the blue, and I could use a stronger word. People who make such estimates are irresponsible.”
Dr. Jonas Salk, who developed the first polio vaccine that was put to mass use in the mid-1950s, is equally sensitive to overstating the problem.
”If you suggest that these people are going back to braces and iron lungs, you`ll cause hysteria,” Salk says. ”I guess what I`m sensitized to is the way people have reacted to AIDS.”
Told of these comments, Roberta Simon, a postpolio victim who now wears braces on both knees, one foot, her shoulders, back and neck, responds: ”They both perceive themselves as powerful for their past achievements and feel threatened by this. I`d like to sit down with them and ask why it is that I walked out of the hospital without braces after I first had polio but now I have to wear them.”
Simon and others like her say the real fear is in not knowing what is happening to you. Donohue says some of those suffering from the late effects of polio have been misdiagnosed as having Lou Gehrig`s disease, a fatal neurological disorder, although the two are not related.
Simon, a registered nurse, bounced from doctor to doctor for four years trying to discover what was wrong with her. One of those years her out-of-pocket expenses, after insurance, was more than $10,000, a steep price tag for very little information. Between March, 1981, and January, 1984, Simon underwent two CAT scans, two radioactive isotope scans, a bone scan, two sets of skull X-rays, two sets of cervical neck X-rays, three gastrointestinal X-rays, three chest X-rays and one spinal X-ray.
”I`ll probably end up with cancer,” Simon says, only half joking. ”But I was desperate.”
Simon finally got a proper diagnosis in San Diego from a doctor that her parents had read about in a newspaper.
Donohue traveled all the way to the Roosevelt Institute for Rehabilitation in Warm Springs, Ga., to learn why she was losing the use of the once-healthy right side of her body. Until then Chicago-area doctors diagnosed her principally as feeling sorry for herself and told her to work harder.
Donohue credits Dr. Ann Bailey of the Roosevelt Institute with giving her a correct diagnosis and good advice. What the doctor could not give back was the normal use of her arm. Donohue pulls the sleeves of her sweater above her elbows and flexes the muscle on the inside of her left forearm. It rises. She flexes the right arm. Nothing happens.
Hysteria aside, it is undeniable that some polio victims who once walked now ride in wheelchairs, and some people who once slept comfortably now require mechanical assistance to breathe while they sleep.
Equally sure, says Jubelt, is the fact that physicians can offer neither a cure, nor the assurance that those suffering the late effects of polio will be able to restore their bodies. ”There`s been no extensive research on this until the last three years,” he explains. ”We don`t have enough data yet to give good advice.”
Tests on laboratory animals suggest that there may be a point in the progression of postpolio syndrome where exercise changes from constructive therapy to destructive abuse. That is the unkindest cut of all for people such as Simon, fighters who once battled their disease to a standoff.
Many were told they would never walk again, but did through strength of will and hard work. As a group, they are overachievers. Now, faced with the need to slow down, they are understandably frustrated.
”We`re all Type A personalities in Type Z bodies,” Simon says.
Faced with this quandary, Donohue founded the Northeastern Illinois Postpolio Syndrome Support Group. Since its inception in June, 1984, the organization has grown to 700 members in four Chicago-area chapters–Lake County, Oak Park, South Du Page and Arlington Heights. The chapters meet monthly to discuss symptoms and offer solace and advice. Collectively, they produce a quarterly newsletter, updating members on new developments and passing along names of knowledgeable physicians.
Simon, who serves as the support group`s medical resource person, is designing a detailed questionnaire to be distributed in the spring to group members.
The results will be fed into a computer to form the nucleus of an Illinois registry of polio victims and to serve as a clearinghouse for information on the late effects of polio. Postpolio patients hope this pool of knowledge will eventually be disseminated statewide.
In addition, Donohue is trying to put together a coalition of public and private health agencies to address the issue. Michigan formed a similar coalition earlier this year and sponsored a conference. The state also funded a toll-free hotline.
These days the hottest line in Illinois remains in Donohue`s home, where the phone rings regularly with requests for information about the bone, joint, muscle and nerve problems that are the outgrowth of a viral infection that was the scourge of this country almost half a century ago.
Donohue calms the distraught, tells them what she knows and refers callers to area doctors who recognize and understand the disorders.
This is a big undertaking for a woman who gets winded making the short walk from her living room to her bedroom, and the scope of the task often causes Donohue to boil over with frustration.
”Where does the polio victim turn for financial assistance to buy braces or wheelchairs?” she asks. ”The March of Dimes has gone to fighting birth defects. We need another President Roosevelt to call attention to us.”
It took Donohue four tries and a lawyer to be declared eligible for Social Security disability payments.
Theories abound to explain the new surge of lost function and weakness among these polio victims: Once-healthy muscles, overworked and misused in order to compensate for muscles destroyed by the initial disease may have finally given out, some researchers speculate. Joints under unnatural stress for decades may have succumbed similarly. In some cases, the muscles and joints are beyond rejuvenation. As a result many of the exercises once used to strengthen them serve only to make them worse.
Explanations of the neurological troubles associated with the late effects of polio, particularly the atrophying of muscles associated with its advanced stages, are more complex. Humans are born with a finite number of motor neurons in the spinal cord. These motor neurons send messages to muscles and cause muscles to work. After age 60 the number of motor neurons declines as a result of natural causes.
Polio victims who were paralyzed lost a number of motor neurons before the normal attrition began. Therefore, some doctors hypothesize, polio victims started at a relative disadvantage to the rest of us, and so began to feel the loss of neurons sooner. Premature aging, they call it.
Another theory involves the healthy nerves that tried to take over the role of nerves destroyed by polio. The surviving nerves were required to stimulate up to five times more muscle fibers than normal and spread far from their centers by use of ”sprouts.” These tiny nerve endings were overextended, the theory goes, and now they are degenerating.
”In that sense,” says the University of Chicago`s Cashman, ”people who had polio are (neurologically) different from those who didn`t.”
And the more severe the initial disease, the greater the difference.
”Maybe their initial recovery was quite good, but if you were paralyzed, the nerve damage went to all four limbs,” explains Dr. Lauro Halstead, who operates the postpolio clinic at Baylor College of Medicine in Houston. ”The sprouts that have grown out to capture muscle fibers are more delicate, so they become dysfunctional.”
Halstead, 49, has a vested interest in all this. In 1954 he was paralyzed briefly with polio. He recovered well enough to play tennis and squash and to run steps for conditioning. But for several years new weakness in his leg muscles and pain in his joints has slowed him down.
This man who used to bound up six flights now rides a motorized wheelchair when making rounds at the hospital. Halstead can still walk; he doesn`t limp. He is simply practicing what he preaches–conservation. Though he can`t reverse the degeneration of his body, he can, by taking it easy, slow it down.
”Society is intoxicated with the notion that if you have a disease, you can cure it,” he says. ”But those kinds of diseases are getting fewer every day. The late effects of polio aren`t fatal. If you slow down, the progression of symptoms seems to abate. You have to reorder your priorities. Rest.”
The whole concept is anathema to our no-pain, no-gain notion of improvement generally and to the therapeutic axioms of polio patients in particular.
When a curving spine and uncontrollable muscle twitches began to trouble Joan Justice, a Lake County housewife, a couple of years ago, she turned first where she always had. ”I went to a health club and joined an aerobics class,” she says. ”I thought I was going to build myself up. That`s what I did the first time I had polio. This time it was the worst thing I could have done. I had to quit after three weeks. I couldn`t even put my socks on.”
Instead of exhausting themselves in gymnasiums, postpolio patients may need to work hardest on their states of mind. Gini Laurie, editor of Rehabilitation Gazette, a magazine aimed at independent living for disabled people, has called the late effects of polio ”more of a psychological problem than anything else. Most of these people have not thought of themselves as disabled. It`s a whole new adjustment in life.”
Holly Donohue`s adjustment includes a handicapped parking sticker on the windshield of her car. ”I have handicapped problems,” she says. ”Now, I`ll say it. Before, I wouldn`t.”
Like so many of the issues that surround the late effects of polio, her admission is ironic. It combines the recognition postpolio victims long for with the sad fact that modern medicine has done little to help them.
”The researchers now talk about how we`re going to cure polio in the Third World,” Donohue says. ”What about the children of yesterday?”
WHAT EXERCISES DOCTORS PRESCRIBE FOR POLIO SUFFERERS
As a rule, the kinds of exercises that benefit people suffering the late effects of polio are passive, like stretching, which keeps muscles limber. However, Dr. Richard Owen, medical director of the Sister Kenney Institute in Minneapolis, offers a more active regimen. Though he doesn`t ask patients to use marginal muscles, he believes wholeheartedly in thrice weekly 20-minute aerobic workouts to improve the heart and lungs. He may even ask those who have only mild symptoms to lift weights.
”We`ve treated over 400 people here, and we`ve never had a patient develop new weakness in a prescribed exercise program,” he says. ”I believe in protecting weakened muscles. I might take someone out of a marathon who had weakened leg muscles, but I wouldn`t take him out of exercising entirely.”
Disuse, warn those involved with postpolio syndrome, is also a form of abuse.
Dr. Neil Cashman, director of the University of Chicago`s postpolio clinic, doesn`t share Owen`s passion for exercise. But he does encourage his patients to do yoga.
For conditioning, many doctors recommend swimming, but only in a superheated pool (temperature of at least 90 degrees). Few health clubs offer water that hot.
As far as medicinal treatment is concerned, it is pretty much limited to anti-inflammatory drugs to combat tendonitis and joint pain, some physical therapy and, in rare instances, orthopedic surgery. In patients with severe fatigue, a drug called pyridostigmine may be used to enhance the communication between nerves and muscles.
In the end, it is difficult to develop a list of do`s and don`t`s except in the most general terms: have a complete examination of the neuromuscular, heart and lung systems, avoid weight gain to reduce joint and muscle stress, and get flu and pneumonia vaccinations to reduce the risk of respiratory infection.
For more information call the Northeastern Illinois Post Polio Support Group at 312-367-1750; the University of Chicago postpolio clinic at 312-962-6221; or United Postpolio Survivors at 312-279-7951. A handbook on the late effects of polio is available for $5 from the Gazette International Networking Institute, 4502 Maryland Ave., St. Louis, Mo. 63108.
