Stroke Foundation Young Stroke Project
Stroke happens in an instant. It attacks the brain, the human control centre, impacts are highly individual, often complex and profound. Most survivors have little understanding of stroke and no experience of living with disability.
Currently there is no age-appropriate information about stroke, its impact and available services and supports for younger stroke survivors. This limits survivors and their loved one's ability to make informed choices, solve problems, and access the supports and services they need to participate in and contribute to the community.
What is Stroke Foundation Young Stroke Project?
Stroke Foundation has been funded by the National Disability Insurance Agency (NDIA) to develop and deliver information for younger stroke survivors, their partners, families, carers, friends, service providers and employers.
There will be a focus on diverse communities, including the specific needs of younger Aboriginal and Torres Strait Islanders and Lesbian, Gay, Bisexual, Transgender, Queer and Intersex (LGBTQI+) stroke survivors.
The project includes everyone aged 18 to 65 years old. It will run for three years.
What will Stroke Foundation Young Stroke Project deliver?
This project will partner with younger survivors, their partners, families and carers to consider their specific needs and deliver content that empowers them to build their ‘new normal’ after stroke. Information will be accessible when, where and how it is needed.
Using study, volunteering and work as an example, we could deliver:
- Planning tools for starting, returning or changing study, volunteering or work.
- Blogs, videos and podcasts featuring survivors, partners, families, employers, health professionals, researchers and service providers.
- Information about supports and services.
Stroke survivor Paul, age 42 was an active father of two running his own IT business. Paul suffered a major stroke on the 10th of April 2018. Paul's work colleague was with him at the time of his stroke, recognised the signs of stroke and got him to hospital quickly.
“I am one of the lucky ones. In some senses I won the stroke lottery. Very fortunately, I had one of my employees, Alex, with me in the passenger seat. When I told him what was happening, he insisted I pull over so he could drive. He literally saved my life as he took me to a doctor's surgery," Paul said.
Paul recalled the lack of age appropriate information available to him during his recovery in hospital and later rehabilitation. Paul is one of many younger survivors who highlight the gap in resources for working age stroke survivors.
"The availability of general information aimed at my demographic was lacking. A lot of the advice I received was around learning to “pace” myself. I had a son under five and a new-born baby, pacing was not really an option. Many of the resources seemed to be aimed at those in their retirement years, even the photos on pamphlets. I didn’t want to retire! I was just getting going!"
Paul hopes with his involvement in the project he will be able to share his experience and make the stroke journey better for others.