Polio's misunderstood legacy: Facts about post-polio syndrome

In 1917, the first Manitoban known to be infected with acute poliomyelitis better known as polio was diagnosed at Winnipeg's King George Hospital.

By 1953, close to 6,000 Manitobans had contracted the virus, over the course of six separate epidemics. Across the country, more than 10,000 people including the 6,000 Manitobans were infected during thattime frame.

Hundreds died. Thousands were left with some form of paralysis.

But for some of those who survived, a dark legacy of the virus survived with them post-polio syndrome, which is often misunderstood and misdiagnosed, survivors say.

The CBC reached out to two experts to find out what post-polio syndrome isand how it effects polio survivors.

Dr. Ming Chan is with the University of Alberta's department of medicine, working with its division of physical medicine and rehabilitation. He is also the executive director of Canada's only dedicated post-polio clinic, offered through Edmonton's Glenrose Rehabilitation Hospital.

Jon Tiessen is a physiotherapist with Winnipeg's Easy Street, a program offered through the Misericordia Health Centre that specializes in helping people living with post-polio syndrome and other conditions that impact a person's ability to perform daily functions.

What is post-polio syndrome?

Also referred to as the "late effects of poliomyelitis," it's a neurological disorder that "encompasses a set of symptoms commonly seen in polio survivors decades after the initial infection," Chan says.

Symptoms vary in severity, but range from extreme fatigue often referred to as the "polio wall" muscle weaknessand extreme, treatment-resistant pain.

In more severe cases, it can also include muscle atrophy, oxygen deprivation and difficulty with swallowing.

"As they age, these same people now find themselves rapidly getting tired, quickly losing strength in their arms and legs, and living with increased joint pain,"Tiessenadds.

Who is affected by post-polio syndrome?

It's estimated40 to 60 per cent of polio survivors later experience PPS,with symptoms appearing from 15 to 30 years after they first contracted the virus.

"It tends to be more common in patients who were more severely debilitated from the initial infection," Chan says.

What causes post-polio syndrome?

The theory is that for those suffering from PPS, motor neurons thathad worked to pick up the slack left by those initially destroyed by the polio virusare now themselves dying out,in part due to a lifetime of "overuse."

That's compounded by the "progressive loss of motor nerve cells and muscle mass related to aging," Chan says.

"While this is not as much a problem in healthy individuals, the impact is far greater in polio patients, whose nerve cells were already depleted and muscles wasted," he says.

Why is it hard to diagnose?

In part, because the polio virus itself is not on the minds of health-care professionals or the public, thanks to successful worldwide vaccination programs.

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If someone has a headache, they're not readily going to make the connection to a virus they had 30 years ago,nor will they have an easy time convincing health-care providers of that connection.

It's often only when the symptoms of PPS begin to impact a polio survivor'squality of lifethat they seek out medical care and oftenwhen the symptoms start to mimic the characteristics of the original polio virus itself.

"Suddenly, you're having trouble combing your hair," Tiessen said.

"You're having trouble getting dressed. You find that your arm isn't as strong as it used to be. You used to be able to do this with your right, dominant arm. And you know what? You can't anymore. That's sometimes the point when people go, 'Oh, you know what? Something's happening.'"

Is it curable?

No, but it is treatable. It's key for those suffering from PPS to avoid over-exertion and build in regular rest times through the day, and not to beafraid to rely on a walker or crutches or even a wheelchair if needed.

It's also important to find aneurologistwho is familiar with post-polio syndrome and its idiosyncrasies. Polio survivors who have trouble swallowing can ask a health-care provider to arrange a "swallow study"to determine which muscles are affected and how to accommodate it.

And for those who have trouble moving, it's important to reach out to a physiotherapist who is also familiar with post-polio syndrome and itschallenges, especially regarding the risk of overexertion.

"If it's post-polio, what you're trying to do is maintain your abilities and maintain your capacities. It doesn't get better. It only gets worse," Tiessen says.

"But what we do know is that we can help people maintain what they havefor longer. And that's what any of us are trying to do."

For more information about post polio syndrome and available resources, contact the Post-Polio Network (Manitoba).