By Angela Genusa
posted 1-9-96
Decades after the polio epidemic of the 1940s and '50s that disabled and killed hundreds of thousands of people, some survivors face a degenerative muscle condition that subtly mimics the original disease.
Since this resurgence of symptoms resembling those of polio emerged in the 1980s, healthcare professionals have been helping these survivors grapple with the baffling malady. Called acute paralytic poliomyelitis sequelae or, more commonly, postpolio syndrome, its symptoms include fatigue, exhaustion, muscle weakness, painful joints, and sometimes breathing difficulties.
Physicians have not determined what causes the syndrome or how best to treat it. Until they do, many polio survivors in their 50s, 60s, and 70s are re-experiencing some of the same debilitating symptoms they thought they had conquered when they were young.
"During acute polio many of these people were immobilized [and using] a wheelchair, and then they may have gotten to where they didn't even have to use a cane," said Vicki Johnson, MSN, RN, assistant professor at Texas Tech University Health Sciences Center School of Nursing in Lubbock. "Now they may be back in a wheelchair. They thought they had overcome that disability and were a survivor, and now they're having to face it all over again."
Research on the cause of postpolio syndrome has been inconclusive, Johnson said. One theory is that the polio virus becomes active again after decades of dormancy in the body, she said.
Another possibility gaining credence with healthcare professionals is the wear-and-tear theory. This hypothesis posits that nerve cells in the spinal cord regenerated to replace those afflicted by polio were forced to take over the workload of their destroyed or damaged neighbors. After 30 or 40 years of doing extra duty, these nerve cells become exhausted. Years of using other muscles and joints to compensate for those weakened by polio takes its toll on patients as well.
"[Back in the '50s], when we got [polio patients] to a certain function at a certain stage, they went out and assumed a lifestyle they wanted," said Marge Barre, MEd, PT, associate professor at the University of Texas Southwestern Medical School.
"They took off those braces, got out of a corset, threw away their crutches, and began to function at whatever level [they were able to] without any assistance," Barre said. "Oh, they could walk, but they couldn't walk to where you'd have the proper biomechanical structure for that walk. We can look back and know now that these people should have never gotten out of some of those assistive devices."
Mary Ellen Brown, 58, of Danville, Calif., had polio when she was 19. Her experience led her to change her college major to physical therapy, and after graduation she worked with polio patients. Now a physical therapist at Ygnacio Valley Physical Therapy in Danville, Brown shares a special rapport with her postpolio patients.
"I have shared my experience dozens of times," she said. "It gives me a decided advantage in dealing with my patients."
Brown said that other than a fall that occurred a few years ago, after which she began wearing a brace on her injured foot, so far she has not experienced any symptoms of postpolio syndrome.
"Maybe I'm lucky and have not had a problem with the postpolio syndrome, but I would like to think the way I use my body is efficient," she said. "Being a PT, I can judge the needs of my various muscle groups and joints and maybe prevent some things. I pace myself all daylong and never push [myself]."
John Cave pushed himself hard after he recovered from polio at age 9. By the time he entered high school, he was no longer bothered by polio symptoms. "I couldn't run, but I could walk," he said. "I walked with a very slight limp, which looked like maybe I had a sprained ankle."
Cave earned a college degree, married, and worked at jobs requiring strenuous physical activity, such as repairing air conditioning units and automobiles. He later became a laboratory technician for Atlantic Richfield.
Beginning in 1980, routine tasks began to exhaust Cave. He said that it took tremendous effort for him to get through the day. Cave began using one cane, then two. In 1984, after working 38 years, he decided that the physical strain was too great and took a medical leave of absence. He had no idea that his ailments had any connection with his long-forgotten childhood illness of 43 years ago.
"I knew I had some residual weakness from the polio when I was a kid, but it never crossed my mind it was related," he said. "I was really kind of lost at sea about what the problem was." After a long period in which he was mystified by his condition, Cave learned that his symptoms were those of postpolio syndrome when he attended a meeting for polio survivors held by the Dallas Area Post-Polio Association.
No physical therapy, surgery, or drug shows promise for postpolio syndrome patients such as Cave. Healthcare professionals say that the best therapy seems to be physical and emotional support.
Barre said that most postpolio syndrome patients need an orthotic or assistive device to aid in the alignment of feet, ankles, hips, or back. Some may also benefit from the increased mobility provided by a wheelchair or an electric scooter.
"Most of these patients do not need exercise," Barre said. "We used to be geared to the fact that if a muscle is weak, you exercise it. Some of these patients say to me, 'I need exercise.' I say, 'For gosh sakes, that's not what you need. If you exercise those muscles, they're probably going to get weaker and weaker.' "
Emotional support is also an important aspect of treatment, said Karen Donovan, MSW, LCSW, a Los Angeles psychotherapist who has postpolio syndrome. Donovan treats fellow postpolio patients, and many who visit her office are overwhelmed with the increasing realization that they cannot function as well as they used to, she said.
"They feel very betrayed," she said. "They worked very hard to get out of their wheelchairs or braces and become very high-functioning people. Slowly this fatigue and pain starts creeping up on them. It takes a long time, and there's a great deal of resistance to acknowledging they are not the physical person they once were. That takes its toll emotionally. You have to help the individual find their coping skills."
Barre said that as a physical therapist she looks at patients' posture and analyzes what patients do to function, how they walk, and what is out of line. She then determines what assistance she can give to help their alignment and stability. She said that a brace, orthotic, or crutch is usually necessary.
Healthcare professionals should be aware that the primary need of postpolio patients is to maintain function and as much mobility as possible, Johnson said. Postpolio patients need range-of-motion activities, just like a patient who has arthritis, for example.
"These people are very resilient--they are fighters," Johnson said. "They have not just given up to a disability but have lived and excelled in spite of it. They have worked for a lifetime to maintain their function. You don't want to chance losing that because they have either a related or an unrelated illness, and they're immobile for a while."
For now, healthcare professionals will continue to see cases of postpolio syndrome as the population ages. However, medical researchers predict that by 1997 the United States will see the last cases of postpolio syndrome as the population born before the discovery of the polio vaccine tapers off.
Meanwhile, postpolio syndrome patients such as Cave are learning to accept a slower pace and a new lifestyle that may include having to lean once again on the supportive devices they threw away long ago.
Postpolio syndrome "is an insidious thing that doesn't get better," Cave said. "It gets worse, and you've just got to regroup and decide what you can do and how you're going to deal with your present situation. With the onset of this, just very insidiously, I began to lose the ability or the strength to handle [things I once did], and it was really traumatic. It still is because it's an ongoing problem."