We wanted to find out how everybody has been going during this very challenging time and share our stories. During the lockdown in Victoria, we surveyed our members to find out more about how coronavirus has been affecting people with histories of polio.
40 people completed the survey between the 3rd of May and the 19th of May 2020.
Most of our respondents had contracted polio before 1960, with just three younger people who had contracted polio after 1960. Some other supporters and community members also filled in the survey. We believe these numbers reflect our general membership demographic, a good reminder to invite and welcome more younger people and migrants to join PPV too!
Challenges of the coronavirus pandemic
For most of us, the lockdown made it a lot harder to keep in touch with family and friends – but others are used to staying home, or have learned to use technology to keep in touch.
A great concern for many people with polio is regular exercise, and just over half of respondents were having difficulty with that, with access to hydrotherapy, pools, gyms and other sports facilities interrupted.
Getting medical treatment has also become significantly more difficult. Of great concern are 3 respondents who are having increased difficulties paying the bills and keeping a roof over their head.
Thankfully, family, friends, carers, neighbours have all come to our assistance. Other responses were food deliveries, nurse on call, and ‘husband’ also came in handy a couple of times. One person called on a charity to help, and one person who may have needed help didn’t receive any. Its a good reminder to reach out to people in our communities who may need it.
The “COVID Safe” App
As the Covid-Safe App was rolling out, we wanted to know if people were using it, and what they thought. While the 55% of people who had installed it on their phone already was very significantly higher than the population of Australia as a whole, contention around the apps security and privacy was still a major issue – even for many of those who did download the app.
“I am still a little concerned about security and having Big Brother keeping tabs on my whereabouts but I also see the necessity.”
“I don’t like any of the government assurances re health issues and data storage.”
“Hopefully it will give everyone a chance to see family and friends.”
Echoes of Polio
People were asked “Do you think that your experience of polio has made it harder or easier for you to adapt during this pandemic?” – and the responses were decidedly split. Some people had a chance to let the world catch up to their slower pace of life. Others felt used to it and had survived worse, but for many there were added challenges, especially the difficult memories of childhood polio.
“Much harder as bringing back buried memories of my 6 yrs in hospital and the devasting personal and financial effect on my family” Rosemary
“Brought back very difficult memories.”
“Much easier, I was in isolation when I got polio, had schooling via mail etc I was kept away from other people but coped with it then” – Lyn
“Much easier. Less appointments to go to when over-tired. Can take things slowly which suits pained body and lack of sleep due to pain. Have spent all my lifetime finding alternative ways of entertaining myself, pacing and being patient with a tired pained body, so much easier now with less external demands. Can go at my own pace.” Jan
People were also asked Does this pandemic bring back memories of the time that you or others around you had polio? A much clearer majority said it did, other than for those who had polio as a baby, or not at all.
“Yes many awful memories. Isolation the noise of ventilators and being deemed dirty and contagious” – Robyn
“The memories are seldom from my mind what very few I have but it has increased the fear of catching the virus.” – Allen
The survey was a good opportunity to share stories and have a discussion with members from across the state, and one as far away as the Kimberleys in Western Australia. We’ll leave you with some heartwarming stories shared in the survey. If you’d like to continue the discussion, feel free to chat in the comment box below the post.
“I’m inspired by community kindness and support for health workers; inspired by capacity to adapt and be innovative at work; seen people work phenomenally hard to make things happen; seen sick leave reduce because our front line workers want to help the patients and be there; seen health services become flexible and make Telehealth happen and give validity to the well being of our employees; see the state work collaboratively with the sector to keep everyone safe. It has been a privilege to be involved in public health during a once in a lifetime pandemic. Great to understand the perspectives of our post polio community living through a second pandemic.” – Anne
“The numbers on my letter box were stolen. I didn’t realise this. The postman came to my door to tell me. When I said thanks and laughed and said he knows where I live. He was concerned and told me it isn’t the mail what if an ambulance or fire truck couldn’t find me. A reality shock and a grateful customer was me. I rang the PO the report his good deed. I think it all got lost in all the chaos so now at least you know there are some good guys around.” – Robyn
“Friends have been very kind. One family gave us two pumpkins, too hard for us to cut so we passed them on to neighbours, who made spicy pumpkin soup for both families.” Fran