New Challenge Arises for Polio Survivors
Phil Thorpe was a young airman in 1951 when he got orders for Korea. Instead of going to war, he wound up in the hospital with the scourge of the time, polio.
He was hospitalized for nine months, battling the virus that destroys muscle motor neurons in the brain and impairs the central nervous system. Doctors told him he would never walk without braces and crutches, but he proved them wrong through intensive physical therapy and muscle transplants.
Thorpe married, reared a family, ran a business. Then, in the 1980s, he began tiring faster, his arthritis worsened and he started having trouble sleeping.
He was diagnosed with post-polio syndrome, a cruel sequel that shows up 30 or 40 years after the infection.
Before vaccines were developed in the late 1950s, polio paralyzed or killed an estimated 50,000 people a year. Post-polio syndrome, or PPS, could strike up to 70% of the 1.63 million Americans who survived.
Today, the 69-year-old Thorpe uses two canes to get around, and he’s learned ways to conserve his energy.
“The first thing you should know, it’s not fatal,” he said. “The second thing is, there is no cure.”
The syndrome occurs as neurons wear out. It can be diagnosed by muscle and nerve tests that separate it from the normal aches and pains of aging. Polio affected 90% of the motor nerves of those who had muscle weakness or paralysis, killing at least 50% of the nerves.
“Because those of us who had it had fewer neurons, our neurons branched out to supply muscles that didn’t have their own nerve cells,” said Dr. Craig Nettleton, a polio survivor and psychologist at St. Joseph Rehabilitation Hospital and Outpatient Center in Albuquerque. “Our neurons worked overtime.”
Because polio affected its victims’ brain stems, neurological disorders also show up. A 1990 post-polio survey found that most people with PPS have concentration, memory or attention problems.
“There are no primary memory problems,” Nettleton said. “What I’m seeing is not so much a decline as a difficulty in getting information stored in the first place.”
Thorpe said he sometimes has trouble keeping his mind on a task.
“It’s like my brain gets tired. You can’t will yourself to do things all the time,” he said.
Other symptoms range from overwhelming fatigue and muscle weakness to joint pain, intolerance to cold and trouble swallowing, breathing and sleeping.
The problems all have the same origin--nerves killed or damaged by the polio virus years before, said Dr. Richard Bruno, director of the Post-Polio Institute at the Englewood Hospital and Medical Center in Englewood, N.J.
Post-polio fatigue is associated with a severe inability to focus attention and by a marked reduction in the hormone that activates the brain. Magnetic resonance imaging reveals damage to the brain-stem neurons that activate the brain.
PPS sufferers report new muscle weakness in limbs hit by the virus, but 75% also report weakness in limbs they believed weren’t touched.
“There’s no such thing as an unaffected muscle,” Bruno said.
It’s like an eight-cylinder car running on four cylinders. “It’s not one of these things where you can say, ‘Push through the weakness and push through the fatigue,’ ” he said. “Every time you drain these batteries, the more likely for the battery not to recharge again.”
That’s a problem for polio survivors, many of whom became strivers and overachievers. They beat polio by embracing the “use it or lose it” philosophy, and now they’re being told to “conserve it to preserve it.”
Many find it difficult to slow down, use a cane or turn to a wheelchair and other devices for help. They tell Bruno, “I went to school, I went to college, I went to grad school, I’ve now become president of this company and I am not going to use a cane. I am not going to be a cripple again. I did that. I knew what that felt like and I am not going to do that again.”
That’s why Bruno’s clinic takes a behavioral approach to treatment, having patients keep logs of what activities cause problems and how to modify those activities.
“If you take care of yourself, stop being Type A and driven, you won’t get any worse, and you will feel better,” Bruno said. “But if you continue doing what you’re doing, just draw a straight line and follow it into the toilet.”
Nettleton, 48, agrees it’s a tough adjustment. He got polio at age 5 but “passes for normal,” since the virus didn’t leave him with atrophied limbs or other outward signs.
Now, however, he’s having problems with pain and fatigue. He knows his patients’ fear and their memories of feeling isolated.
“It’s a painful process for a lot of people,” Nettleton said. “You have to work through this before you can deal with therapy.”
Although PPS has become more recognized by the medical community in the last two decades, Bruno said, only about six U.S. centers have formal clinical programs and research projects. Because polio is no longer an epidemic, post-polio is viewed as a medical condition that will not occur in the future, he said.
Post-polio takes decades to develop, so many people didn’t show up at doctors’ offices with new weakness until the ‘80s. At first, doctors diagnosed some with muscular dystrophy or other diseases. It took time to recognize that something new was hitting polio survivors.
Post-polio clinics try to teach people how to pace themselves, to decide what’s important and ignore the rest, such as picky housework details.
“Dust,” Nettleton intones, “doesn’t spoil.”
