Carlton's Adrian O'Malley was 34 and just weeks from becoming a first-time dad when he suffered a stroke.
Now he is determined to make a difference to other 'working age' stroke survivors after joining the Lived Experience Working Group, which is part of the Stroke Foundation's Young Stroke Project.
The project is funded by the National Disability Insurance Agency (NDIA) to help Australians aged 18 to 65 find their 'new normal' after a stroke by determining their needs, and developing information and resources.
The Stroke Foundation said about 56,000 strokes occur in Australia each year. Of those, about 25 per cent - or 20 each day - affect people of 'working age' (18 to 65).
Mr O'Malley - a fit and healthy horticulturalist - woke up early for work one Saturday in 2006 and was making a cup of tea when he noticed his right hand was "a bit funny".
"At the time, I had no idea I was having a stroke," he said. "I didn't associate stroke with someone in their 30s."
When he noticed something wrong with his leg, he woke his pregnant wife and said he thought he should go to hospital.
They drove to St George Hospital and by the time he walked in, he was dragging his leg. At triage, they checked his blood pressure and instantly hit the alarm.
"Normal blood pressure is 120/80. Mine was 240/150," Mr O'Malley recalls. "I was in the process of having a stroke."
Mr O'Malley had an MRI which not only detected the stroke but an underlying issue with his heart structure. After working to stabilise his blood pressure for two weeks, he underwent heart surgery before returning to the stroke ward.
"I spent nine weeks in hospital and had to learn to walk and talk again," he said.
"I was motivated to get well and get out because my wife was pregnant with our first child, but it was incredibly challenging for both of us."
Daughter Eve was born just 10 days after he got home from hospital. He said having a baby not only motivated him to get well but served as rehabilitation "because you have to pick that kid up".
He was determined also to be a positive role model for his daughter and not "angry with the world", however he said life post-stroke was difficult.
He has a number of disabilities, including vision impairment, which means he can no longer drive.
He returned to horticultural work but found it hard to get jobs and eventually moved into the disability sector. He now works four days a week, and lost a lot of his income.
Stroke Foundation national manager StrokeConnect Jude Czerenkowski said younger stroke survivors had their whole lives ahead of them. Some were just starting out in their careers, others had young children or financial responsibilities.
She said there was a lack of age-appropriate information available to them.
"Almost 90 per cent of younger stroke survivors have specific needs relevant to their stage of life [and] they are telling us these needs are not being met,'' Ms Czerenkowski said.
"The Stroke Foundation Young Stroke Project will aim to close those gaps and give younger people with stroke tools to empower them to live well.
"Information will be available when, where and how it is needed - including videos, podcasts and blogs."
The Lived Experience Working Group meets online once a month to help guide the project, facilitate engagement with the community, and develop project themes and content.
Mr O'Malley said he was determined to ensure other 'working age' stroke survivors did not feel isolated or alone in their recovery and were able to navigate the health system effectively.
"I want to help others that have not had the outcomes or opportunities be able to access the tools they need to live a meaningful life," he said.
When recovering from his stroke, he found there was no literature for young survivors.
"When I was in the stroke ward, there were no other 34-year-olds. There were no 50-year-olds. There were pamphlets on aged care and incontinence," he said.
That is why he is so pleased to be a part of the Lived Experience Working Group.
"If I can make the journey easier for one person I think that is the best use of me," he said.
The Stroke Foundation Young Stroke Project is seeking feedback from stroke survivors, their partners, families and friends along with health professionals and researchers on topics that need to be included, such as study and employment, relationships and parenting, recreation and self-care, grief and acceptance and navigating the health system.
To find out more about the project or to register your interest click here.
