June 14, 2001
Up to 4 million Australians were infected with polio during the last century and we now know that they may be susceptible to a secondary attack. Post-polio syndrome could leave survivors using wheelchairs or ventilators for the rest of their lives. Peta Newbold reports.
For Gillian Thomas the tragedy of contracting poliomyelitis is summed up in an image. It is of a mother standing forlornly at a wire fence surrounding a hospital where her isolated ten month-old baby cries in pain.
That baby was Gillian, but it is not her memory, she was too young to remember.
The scene was described to her years later by another patient at the hospital who knew them both.
The Great Polio Epidemics
Gillian was a victim of the great polio epidemics of the 30s, 40's and 50's, which left around 20 million survivors around the world.
She spent three years in an institution and they said she would never be able to walk.
'They' were wrong, but Gillian's full-length callipers have been a life-long reminder of the series of treatment and exercises that slowly, painfully, restored some mobility to her legs and an arm.
Most of the survivors got on with their lives and the memories faded but as many as 40 percent of them were in for a very nasty surprise.
For Gillian it started as a pain in her shoulder and then an overwhelming fatigue. Thirty-five years after the original attack, the polio had struck again.
The progression of polio.
Polio is highly infectious and invades the body through the mouth or nose. About 99 percent of people who contracted polio got the non paralytic kind.
They just felt a bit sick.a bit like having flu. The upside was that this gave them immunity from the disease.
In the unlucky ones, the virus travels through the bloodstream to the spinal cord.
It lodges in the nerve cells that control muscle activity and many are damaged or killed off. The result is muscle paralysis or weakness in all or parts of the body such as the arms, legs and chest.
The reason many polio survivors recovered from their original paralysis was that neighbouring nerve cells that were not killed by the infection were able to sprout extra branches to muscle fibres that no longer had any nerve supply.
And because there were fewer of them, these nerve cells and muscles had to work a lot harder than they would have normally, to produce movement.
The 'wear and tear' theory.
And here lies a clue to what could be causing PPS. Those additional nerve cells and overused remaining muscles might be simply 'wearing out'.
Probably the best known expert on PPS is U.S. polio survivor and doctor, Lauro Halstead. He has written a book 'Managing Post-Polio: A Guide to Living Well with Post-Polio Syndrome' and he's coming to Australia to talk to polio survivors in December.
He said, "Everything has a finite life-span, from a car engine to the human heart. A motor neuron is no different. Neurons that normally drive 20 muscle cells in the polio patient may now have to supply up to 2,000 muscle cells."
Basically, this is a demand that the motor nerves are not designed for.
Not all experts agree that this is the cause of PPS. Nor is there a simple test to diagnose it.
As many as 16,000 Australians could be affected by PPS and one of the many hurdles they face is that some doctors don't even believe it exists.
Some survivors are told they are 'just getting old' or 'it's all in their mind'.
Main Symptoms of PPS
- Muscle weakness that gets progressively worse.
- Severe fatigue.
- Pain in muscles and joints.
- Decreased muscle endurance during activity.
What can be done to help post-polio sufferers?
Although PPS affects each person differently and therapy has to be individually tailored, everyone with the disease has to reassess the way they do things.
Dr Mary Westbrook published the first Australian research into the late effects of polio.
"Research has proved that making lifestyle changes such as reducing tiring physical tasks, sitting down to do jobs, pacing oneself and resting are the most effective ways to reduce PPS symptoms." she said.
- Gentle exercises can reduce pain and improve movement.
- Drugs are available for pain relief.
- Nighttime ventilation can help provide good sleep for people with weakened respiratory muscles.
- Mobility devices can reduce fatigue and slow down further loss.
Take it easy.
Many original victims recovered by pushing themselves hard. 'Use it or lose it' they were told.
It's not surprising then that the 'conserve it to preserve it' advice can be hard to come to terms with.
"Survivors of polio fought so hard to put it behind them all those years ago that many now resist getting mobility aids because they see it as giving in." said Gillian Thomas.
Even she is reluctant to admit that she uses her wheelchair almost permanently now.
The Post-Polio Network
Gillian is President of the Post-Polio Network (NSW) Inc., a voluntary organisation struggling without government funding to provide help, advice and support for polio survivors and their families.
If there is a bright side to post-polio syndrome it is that the illness is giving people the opportunity to come to terms with the events and feelings they have repressed for decades.
Those lost years when they were separated from their families for months or years in hospital and then came home to face discrimination because of their disabilities.
Gillian says, "Many polio survivors coped by repressing memories of it and disappearing back into society. Now post-polio syndrome has given us the opportunity to acknowledge our disability, mourn our losses and draw strength from each other."
Post-Polio Network (NSW) Inc.
A booklet Helping Polio Survivors Live Successfully with the Late Effects of Polio is available free of charge from the Post-Polio Network.
Reprinted with permission from Editforce