PPS is a slow-moving and little-understood illness that can show up 15 to 40 years after a person had polio. Symptoms include progressive muscle weakness that gradually worsens, along with severe fatigue and pain in muscles and joints, and decreased muscle endurance during activities.
It can result in an agonizing reversal for polio survivors, leaving them dependent on wheelchairs or ventilators for the rest of their lives."I think the particularly cruel thing about post-polio syndrome is that it tends to affect more severely those people who had perhaps a more severe level of disability to begin with, but who rehabilitated themselves vigorously and brought themselves back to a relatively good level of function," says Christopher P. Howson, director of Global Programs for the March of Dimes Foundation.
"It appears that those muscles that were really used in rehabilitation may be affected more severely in post-polio syndrome," he adds.
Although not confirmed, it's widely believed that PPS results from degeneration of motor nerves that sprouted new connections to make up for other nerves killed by polio. Those surviving motor nerves may be wearing out prematurely because they've been supplying many more muscle fibers than normal.
PPS is difficult to diagnose and too few doctors recognize it or know how to treat it, Howson says. The symptoms are common to many other conditions and there is no definitive test for PPS, he adds.
That's why the March of Dimes released the new report for medical professionals to guide them in the diagnosis and care of patients with PPS. The organization also released guidelines to help people with PPS.
There are between 10 million and 20 million polio survivors around the world, and it's estimated that up to 40 percent of them may develop PPS. As many as 250,000 U.S. polio survivors may already have the syndrome, the March of Dimes says.
"We recommend to people if you feel that you have the symptoms and signs that are identified in the reports, we encourage you to see your physician and make sure that you get a careful medical history done, that you mention that you've had polio. And then, hopefully, if your physician is aware, he or she will refer you to a neurologist or other specialist," Howson says.
There is no cure for PPS. But specialists can help PPS patients develop a management plan to lessen or eliminate some of the symptoms, Howson says.
The plan may include losing weight, taking regularly scheduled naps, and using a wheelchair even if you are able to walk. It also may include energy-conservation techniques, sitting instead of standing whenever possible, for example, or moving your washer and dryer from the basement to the main floor.
Joan Headley, executive director of the International Polio Network in St. Louis, Mo., calls the March of Dimes' reports "great."
"People should be encouraged to read them and see if it fits them. If it does, they should get to a physician and have a general physica,l so they can determine if it is or it isn't" PPS, she says.
What To Do
Here's where to find the March of Dimes report on PPS for medical professionals. And here's where to go for the PPS patient guidelines. (To read them, you'll need Adobe Acrobat Reader, which you can download here.)
There's more information for polio survivors, their families and health-care providers at the International Polio Network.