By ROBIN LORD
STAFF WRITER
NORTH FALMOUTH - Shirley Nisbet thought her challenges from a polio infection when she was five-years-old in England were over. She had moved on from the devastating experience with traumatic memories but only a slight limp.

Shirley Nisbet, shown in her North Falmouth art studio, was a little girl in England when she contracted poliomyelitis. Nearly 60 years later, she's dealing with post-polio syndrome and will speak on the disorder at a local conference Thursday. (Staff photo by VINCENT DeWITT)

But about 20 years ago, while living in Washington, D.C., the disease began to haunt her again.

"I used to walk the dogs in the park, and I couldn't get my legs to function properly," she said during an interview last week at her North Falmouth home. "Then I developed a very bad backache, and I knew something was wrong."

Advice from three doctors ranged from back surgery to acupuncture to confinement to bed for six months. And then she found the answer: She was suffering from post-polio syndrome.

A doctor familiar with the condition fitted her with two braces on her lower legs, and with that Nisbet's stumbling and back pain disappeared.

Post-polio syndrome is not a reoccurrence of the virus, poliomyelitis, which is now eradicated in this country, but reached its height in the 1940s and 1950s. Instead, the condition is a gradual weakening of already damaged muscle systems from age and overuse, according to Dr. Scott Abramson, a physiatrist at Rehabilitation Hospital of the Cape and Islands in Sandwich.

Abramson will speak at a conference in East Sandwich Thursday on the syndrome, along with Anna Rubin, an education and outreach coordinator at Spaulding Rehabilitation Hospital in Framingham, and Nisbet.

Polio, a virus, kills the nerves that feed muscles. Depending on the severity of the infection, atrophy of the muscles occurs, leaving the victim unable to use the effected parts of the body.

Surrounding healthy nerves respond to the damage by sprouting new fibers and sending them out to the affected muscles to help compensate and repair the damage. As a result, the healthy nerves are asked to do twice the work they would normally do, Abramson said. As nerves begin to die off with age, or from overuse, the muscles that were originally effected by the polio infection weaken once again.

"Eventually the body can't keep up with the sprouting," said Abramson.

Ironically, polio victims may actually see more muscle groups affected with post-polio than with the original bout with the disease, he said. The reason is that those muscles may have been affected during the acute stage of the virus, but the person's otherwise young and healthy body did not notice or quickly compensated for the damage.

Some post-polio victims experience trouble swallowing and breathing, due to residual damage from the original infection.

Rehabilitation Hospital of the Cape and Islands has treated about 10 people on Cape Cod for post-polio syndrome over the last couple years, said Abramson. It is hard to say exactly how many people here suffer from the condition. There are about 160 members of the Cape Cod Post-Polio Support Group, of which Nisbet is a member.

"So many people are retiring to the Cape and those are the people who, after 40 or 50 years, are beginning to notice post-polio syndrome," she said.

There are about 1.2 million polio survivors in the U.S., according to Anna Rubin. About 40 to 60 percent of those who suffered from polio will experience post-polio syndrome at some point in their life, she said.

The more serious the initial polio bout, the more likely the person will experience post-polio syndrome.

Post-polio syndrome is characterized by a group of symptoms including:

--- Unaccustomed fatigue.

--- Muscle weakness.

--- Respiratory difficulties.

--- Muscle and joint pain.

--- Intolerance for cold.

--- Loss of function.

Finding a doctor familiar with the disorder is crucial, said Abramson, because the symptoms can mimic other disorders. There are no specific tests to positively identify post-polio, but muscle tests by a physiatrist, someone trained in physical rehabilitation, can help rule out other problems. Blood tests to rule out such problems as a malfunctioning thyroid, and magnetic resonance imaging procedures or X-rays to rule out other structural problems can also help.

Anemia, heart disease and depression can also cause similar symptoms.

Many people with post-polio are misdiagnosed, said Rubin.

"We had a physician call from North Carolina whose neurologist told him to buy a wheelchair and pack it in," she said. After treatment at Spaulding and a few adaptive measures, he was able to carry on with his life.

Many not only struggle with the physical return of the disease but also with the psychological echoes it brings with it.

"To come back to polio is a real emotional hurdle for a lot of people," said Rubin.

Some patients resist the use of leg braces, having happily shed them long ago. Many have been "passers" all their lives, she said, and have hidden their past polio. To be forced to acknowledge it later in life is extremely difficult for some people.

Nisbet said she has coped with several bouts of depression from the syndrome. Her most recent was about 18 months ago when she was stuck in a traffic jam for about 90 minutes and lost the use of her right leg. She responded by accepting the fact she could no longer drive with foot pedals and had her car adapted with hand controls.

"I concentrate very hard on trying to keep a balance. I decided that what was most important in my life was not housework. I wanted to do my painting, I wanted to enjoy my surroundings and I wanted to do gardening," she said.

There is a fine line between staying active and overdoing it, said Abramson. While a patient's first reaction to weakening muscles might be to exercise more to try to strengthen them, over-stressing muscles will actually hasten the deterioration.

"This is the most independent and driven population I work with, and because they overcame so much, many of them developed a type A personality. It's a good attitude to have, but it can also be counter-productive because we recommend not overdoing it," he said.

There is no medical treatment for post-polio syndrome. No drug therapy has been developed, so patients must rely on lifestyle modifications and adaptive devices.

Falls are one of the greatest risks to a post-polio sufferer because of unstable leg muscles. Recovery from injuries, like hip fractures, often takes longer because the patient's stability is already compromised by the post-polio condition, said Rubin. Therefore, preventing falls becomes a priority in dealing with the condition.

Moving furniture, picking up rugs and installing grip bars in tubs and doorways are some of the measures that can be taken to prevent falls, she said.

Nisbet said learning what you can or cannot do and how far you can push yourself is the key to living with post-polio syndrome.

"If you're tired walking, see that you park your car closer to the supermarket. If you have trouble standing, get a stool for the kitchen so you can sit down and cook," she said. "It's a matter of conquering each thing, which is like when you learn anything new and it's exciting. You find a way to solve the problem. It makes you feel stronger, even if you are weaker."