Thousands of people who overcame the disease as kids are feeling the late effects of polio, or post-polio syndrome.
Polio had a big effect on Fitzpatrick’s childhood, temporarily paralysing her right leg below the knee. She wore a calliper until she was 10, and although she regained her mobility – and was very active as a teenager, taking part in competitive swimming, diving, netball and tennis – she walks with a limp. That eventually caused arthritis in her right ankle, which has been operated on three times.
She’d always experienced some tiredness but it wasn’t until she joined Polio New Zealand (an organisation that supports polio survivors) that she realised the deep fatigue she was feeling was a symptom of what’s known as the late effects of polio (LEoP) or post-polio syndrome.
“Fatigue is the standout symptom – for me, it went well beyond just having a tired leg.”
Her other symptoms include respiratory problems and an intolerance for some drugs, particularly anaesthetics. “I get really knocked around with anaesthetics.”
Before a vaccine came along in the mid-1950s, polio killed thousands of children worldwide every year and left many thousands more with permanent muscle weakness. The disease has now been almost completely eradicated.
Although polio may be a fading memory for most people, up to 6000 New Zealanders in their sixties and older are now dealing with the long-term effects of the virus. Their symptoms include fatigue, muscle pain and weakness, joint pain and sleeping and breathing difficulties. Some, like Fitzpatrick, have an unusual sensitivity to anaesthetics. “It’s really important for anaesthetists to know if someone had polio.”
The symptoms of LEoP are caused by damage to the nerves that control muscle movement. Although the body can compensate for this damage for many years, it eventually starts to take its toll. According to neurologist Gareth Parry, LEoP affects not only people who had paralytic polio but also those who had a milder form of the disease.
Parry spoke at a recent seminar in Wellington organised by Fitzpatrick to raise awareness about LEoP among doctors and physiotherapists, many of whom either don’t know about it or don’t make the connection between their patients’ symptoms and the fact they had polio as a child.
“Doctors don’t ask, but patients don’t necessarily see it as significant either,” Parry says. “They think it was something that affected them as a child and don’t realise it could be causing their problems now.”
“If I compare myself to my wife – we’re roughly the same age – she rushes around the mountains of New Zealand and goes hiking, but I can’t keep up with her.”
He says the more severe the original disease, the more likely people are to experience problems later, with up to half of those who had paralytic polio likely to be affected as they get older. A few will develop what he calls post-polio muscular atrophy, a more serious condition that causes progressive weakness in the muscles originally affected by the virus.
If the original disease affected the muscles that control swallowing or breathing, the consequences of this more serious condition can be catastrophic. If it affected their legs, they might experience increasing disability and eventually need to use orthotics (leg braces) or a wheelchair.
LEoP can’t be cured, but it is possible to treat the symptoms and stop them from progressing through a graded exercise programme developed by a physiotherapist familiar with the needs of people with neuromuscular diseases. Parry says there’s no place for a gung-ho “use it or lose it” approach when it comes to treating people with LEoP.
“You have to do enough exercise to prevent getting deconditioned, but not tire yourself out. If you overdo it, you will pay a price; your aches and pains will get worse, your fatigue will get worse and your life will be a misery.”
This article was first published in the December 14, 2019 issue of the New Zealand Listener.