What is a memorable childhood experience?

Numerous memories vie for attention. Despite being told not to get out of bed at the Fairfield Infectious Diseases Hospital, I remember my surprise at landing on the floor when I did try to get out of bed. My leg just wouldn’t support me – I had no idea why. I remember parents waving at windows at the end of visiting hour, the timing of which was strictly policed. I remember not knowing what the time was and therefore how long there was to wait for visiting hour. Yet I also remember the excitement of my first ever watch (so I would know when visiting hour was). And I remember the kindness of the kid down the road, also a polio victim with a leg wrapped in sheepskin to keep it warm; he came round to visit me to tell me that things would get better. Also, the kindness of one of my school friends who won a raffle prize of a football signed by all the Essendon players – he gave me the football! That football played a major role in my physiotherapy regime!

How have the late effects of polio impacted on you?

Despite some muscle weakness, I am thankfully still independently mobile. By far my most significant late impact of polio is fatigue. I need to lie down every three to five hours and to sleep at least once during each day. This means “getting horizontal” for 30 to 60 minutes at least twice every day without fail. My body will just not allow me to push these limits. Fatigue forced me to retire from full-time employment earlier than I wanted to, and it continues to restrict the range of activities I can undertake.

Why are you going to Canberra?

Our politicians must understand that while ever polio exists in the world the late effects of polio will continue. The eradication of polio campaign is important, and Australia is playing a part. There are many polio survivors still living lives as near-normal as they can manage, but with ageing they increasingly require support. Our representatives need to know about the needs of these survivors.

Funding is needed to allow Polio Australia to continue its work advocating to the community and health-care professionals, and educating our politicians and medical providers to allow polio survivors to live with as much dignity and independence as possible. The aches, pains, discomforts, inconveniences and indignities of the late effects of polio are not a normal part of ageing and the resultant costs are not covered by aged care assistance. The effects of this degenerative disability don’t go away – they just get worse.

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