The Young Stroke Challenge

By Sharon McGowan, Stroke Foundation Chief Executive Officer

“Daddy, why isn’t your hand working? Daddy why are you getting shoes and socks mixed up?” Oscar, 4.

Far too many young Australians are having strokes. This devastating disease turns lives upside down at a time when many people are just starting to lay the foundations for their future. Families can be thrown into turmoil and careers can be cut short.

Melbourne man Paul Fink is one of Australia’s more than 142,000 stroke survivors1 who are of working age. Paul was fit, healthy, working hard in the IT industry, having fun with wife Lauren and his mates. Paul was 34 and had just become a father for the first time to a son, Oscar.

Then Paul suffered a stroke. It happened in an instant and life would never be the same.

After the stroke, Paul spent two weeks in a coma and the next six months in rehabilitation. As baby Oscar was learning and developing, so too was Paul. Paul was learning to walk, to talk and to feed himself all over again.

Paul spent much of Oscar’s early life focused on learning his own life skills. At a time when he and Lauren should have been enjoying precious moments together caring for their young son, Lauren would be by Paul’s side in hospital, attend doctors’ appointments and support him on the long and emotional road to recovery.

Oscar has been Paul’s inspiration throughout his stroke journey, driving him to become the best father he can possibly be.

Through hard work, determination and a positive attitude Paul has reached many milestones including walking and even running again. Most recently Paul spearheaded Stride4stroke, the Stroke Foundation’s physical activity and fundraising campaign, in which he and a group of fellow young stroke survivors climbed famous Australian landmark the Sydney Harbour Bridge.

Paul scaled more than 1000 steps, which was a huge achievement, given he could not walk three years earlier.

It has been a long and challenging journey, but also one of hope and courage.

This was not the life Paul and Lauren had planned, but it is life and the couple is thankful. They are making the most of every day. They even welcomed a new baby recently, named Harrison.

Paul is not alone. There is one stroke in Australia every nine minutes – and around 30 percent of those strike people under the age of 65. International evidence shows strokes are on the increase in younger people.

At the Stroke Foundation, we hear from young stroke survivors who are frustrated with health and social care systems. Systems and services that are geared towards older people.

These young survivors are looking for different ways to take control of their recovery, to chart their own life after stroke journey. Survivors have found a voice through our social media platforms and on www.enableme.org.au, an online resource which provides information, support and a community for stroke survivors and their loved ones.

We knew there was a gap in services for young stroke survivors, but the question was ‘outside of online and social media communities what do young stroke survivors need’? To find out more, the Stroke Foundation held two ‘Positive Recovery Think Tanks’. The Think Tanks gave young stroke survivors an opportunity to engage and provide direction and feedback for the development of future services to better address their needs. They told us what was working and where improvements were needed.

Issues included:

• The impact of stroke on everyday living – eg. leisure activities, employment and finance.
• Living longer with stroke effects.
• Lack of awareness, recognition and understanding in the community that stroke happens to younger people.
• Grief and loss – ‘adjusting to a new me’.
• Non-physical stroke impacts, including fatigue and anxiety.
• Maintaining a positive recovery – peer support and motivation.
• Secondary prevention – medication, nutrition and exercise.

We are taking this feedback on-board and are now planning to develop more targeted information, including looking at tailoring resources and follow-up services for young stroke survivors and advocating to Governments for more research funding and services for this important group. We are also aiming to run further engagement events for young stroke survivors this year to gather more community intelligence as part of our advocacy strategy.

The young stroke community in engaged, passionate and determined. We now want to give this community an opportunity to have a voice, to bust the myth that stroke only happens to older people and to access the services and supports needed to live well after stroke.

We are advocating for the young stroke community and empowering this community to advocate for themselves whether it be at a local level, or bigger.

For a young stroke survivor, their recovery journey can literally last a lifetime. We want to help guide and support survivors throughout their journey. We know young stroke survivors like Paul Fink and their families are doing it tough. Stroke changes lives in an instant. Recovery can be a long and challenging journey, but it can be better.

Young stroke survivors must be empowered to maximize life after stroke, supported to grow and thrive, to get back to work and contribute to the community.

Paul Fink and his brother Ronnie on top of the Sydney Harbour Bridge at the Stride4stroke launch, Sept 2017