Rose Collins and her older sister Gloria contracted polio as children. (Supplied: Rose Collins)
On a warm summer’s day when it seems the whole world is enjoying the outdoors, Rose Collins will be trapped at home, the air conditioning blasting and a cold cloth and fan ready close by.
The reality if she does not is not something she wants to consider.
“I have to carry an ice towel, a fan, a spray, because if I get overheated then I could go unconscious, which I have done. Once I had to be hospitalised,” Ms Collins said.
She has post-polio syndrome, a complication of the polio virus, which sets in decades after infection.
There is also a similar condition known as the late-effects of polio.
“Post-polio affects my diaphragm, my breathing, my throat,” she said.
“I’ve had speech therapist exercises for that, and the hypothalamus in the brain, which is the thermostat that regulates the heat and the cold in our bodies, so we suffer quite badly from the heat and the cold.
“I can go into a semi-conscious state, which it looks like I’ve had a stroke. I can’t talk, I can’t open my eyes. I’m very hot, my blood pressure is high.”
People also typically experience pain, chronic fatigue and muscle weakness.
Rose Collins only noticed her symptoms of post-polio a few years ago, more than half a century after having polio. (ABC Newcastle: Nancy Notzon )
Diagnosis can take years
Ms Collins did not know she had polio as a child.
Her older sister Gloria was seriously ill with a paralytic form of the virus when she was young, while Ms Collins merely had a fever.
It was not until half a century later that her symptoms started to worry her.
“I noticed it about four, five years ago that I had to take deeper breaths,” she said.
“I’ve always had a problem breathing, but it got worse so I thought perhaps I should check this out with a doctor.”
On the advice of her sister, Ms Collins saw a doctor who knew about post-polio and sent her to specialists, but it still took years to get a diagnosis.
“It took about two to three years because I had to have several of the respiratory tests to see if the condition was getting worse or if it was getting better.”
‘It’s all in your head’: Knowledge of disease fading
A boy is suspended above his bed at the Frankston Home, Victoria, during the polio epidemic of 1937/1938. (Supplied: Hankin Collection)
Polio was officially eradicated in Australia in the year 2000, and there are an estimated 400,000 polio survivors in this country — although the real figure is hidden because of a lack of proper medical records.
Up to 40 per cent of people who have had the disease will develop post-polio syndrome.
“When this strikes it’s terrible. It’s back to the childhood things they might have experienced or seen with other people,” said Wendy Chaff, coordinator of a polio support group in the NSW city of Newcastle.
Ms Chaff said many people had struggled through uncertainty and had been misdiagnosed, with their symptoms put down to old age.
“So many people have gone to specialists who have said it’s all in your head, you’re just imagining it and that sort of thing.”
One of the convalescent homes for children with polio in Collaroy, NSW, during the polio epidemic of 1937/1938. (Supplied: Hankin Collection )
And as memories of polio have faded over time, there is a perception it is just a childhood disease.
“The problem has been that people with polio have lived their lives very successfully and they haven’t been part of medical activities or rehabilitative or physiotherapy activities for many, many years,” rehabilitation physician Helen Mackie said.
“Now they’re emerging as a group who have special needs, but the understanding of their condition has been lost in the fullness of time.
“So people don’t have the experience of having treated people with polio.”
Dr Mackie, who runs a late effects of polio clinic in Sydney, said treatment without considering the polio diagnosis could be detrimental.
“Over-exercising and ignoring some of the other issues BOOKr.VIP to cold intolerance and respiratory restrictions can cause significant problems,” she said.
The Federal Government is funding workshops around the country to educate healthcare practitioners and doctors. (ABC Newcastle: Nancy Notzon)
National workshops underway
The Federal Government is now funding workshops around the country to raise awareness among healthcare practitioners and doctors.
“They [post-polio sufferers] need to have a greater consideration before having surgery and understanding of the effects of surgery,” Polio Australia clinical health educator Paul Cavendish said.
“And then the rehabilitation protocols afterwards need to be adjusted in terms of the types of exercises that are performed to recover someone, and also the timeframes in which they are performed need to be extended out for them to get a successful outcome.”
Feedback from the workshops has been positive, with the program set to continue until June 2019.
Financial burden adds up
But the pain of post-polio does not stop with the disease.
Specialised services and equipment can cost thousands of dollars, and if people are over 65, which many sufferers are, they do not qualify for the National Disability Insurance Scheme.
Experts say aged care funds do not go far enough.
Paul Cavendish from Polio Australia is travelling around the country to raise awareness of post-polio and the late effects of polio. (ABC Newcastle: Nancy Notzon )
Australian Rehabilitation and Assistive Technology Association president Natasha Layton said her organisation was seeing a huge amount of under-met and unmet needs.
“We are seeing people cashing in their superannuation to buy a set of callipers,” she said.
“One of the things we’re worried about is that particularly as people with polio age, we feel that the aged care reforms have not really understood quite the sort of equipment needs and other support needs people might have.”
Dr Layton is one of many looking to the aged care reforms to address these concerns.
“So for example the aged care reforms tell us there’s about a few hundred dollars available annually out of your budget to buy equipment you might need.
“Someone living with post-polio, they might need an $8,000 calliper for each leg.
“So [we are] really looking to the aged care reforms to provide the sorts of equipment and support they require, and we’re working very hard to put some evidence behind what it is people actually may need.”
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