This website has been created as part of the Stroke Foundation Young Stroke Project, a 3 year project (starting in 2020) that is funded by the Australian Government Department of Social Services. The project aims to deliver information and resources for younger survivors of stroke aged 18 to 65 years old, their partners, families, friends and carers.
As a co-design project, the partnership with the stroke community has been integral throughout the project. Working together, people with lived and professional experience have engaged in design, creation and evaluation of resources.
We acknowledge the individual and collective expertise of those with a living or lived experience of stroke.
We recognise their vital contribution at all levels and value the courage of those who share this unique perspective for the purpose of learning and growing together to achieve better outcomes for all.
The Lived Experience Working Group
The Lived Experience Working Group is made up of ten people with lived experience of stroke (survivors of stroke, partners, families and carers).
The working group are closely involved in guiding the project, supporting engagement with the community and developing project topics and content.
Meet our working group members who provide their valuable knowledge, experience and time to make this project a roaring success.
Toni’s stroke was not diagnosed until a week after it happened. It was 2013 and the 46 year did not display any of the F.A.S.T (Face.Arms.Speech.Time) signs.
While stroke did not impact Toni physically, it has had a huge impact on her life. Toni experiences sensory overload daily, she is unable to go out by herself, no longer able to drive and have been assessed as never able to work. Toni’s drive to be involved in Stroke Foundation Young Stroke Project is to add to the development of information which will better educate stroke survivors and their families about the wide-reaching impact of stroke on daily living, particularly the impact of hidden disabilities.
Sue had a stroke in 1993 shortly after she experienced pre-eclampsia which resulted in the stillbirth of her first child. After her stroke, the 22 year old was fully aware of who she was and who the people were around her, but she had to communicate ‘yes’ and ‘no’ by blinking. Sue was unable to walk, talk, eat independently or even smile. It was an incredibly difficult time.
Sue’s husband was not given any information about stroke, rehabilitation or how to help his wife and was not provided with any support. There was nothing available to meet their needs. It took Sue many years to find support relevant to her experience, and has worked hard at ongoing recovery, going on to have three more children.
Beth was a happy, healthy and sociable university student when she had a stroke in 2019 at the age of 19. Beth was at home at the time and her parents recognised what was happening when she began slurring her words and complaining of a heavy feeling in her head and called triple zero (000).
While Beth’s speech returned quickly and she has not been left with any physical impairments from her stroke, she continues to experience headaches, fatigue and emotional challenges.
Nichola brings the family perspective to the Lived Experience Working Group after her daughter Beth had a stroke in 2019 at the age of 19. Nichola has also been a nurse for 32 years. Although Nichola knew plenty about stroke, it is not something she thought would impact her teenage daughter.
Nichola believes her perspective and knowledge will add a different element to the working group because stroke not only affects the individual, it affects the whole family.
Paul ran his own successful business as an IT consultant when he suffered a stroke at the age of 42. The physically active father of two young boys said his world went spectacularly pear shaped.
Paul was determined to move forward quickly in his recovery and credits his practise of martial arts prior to his stroke with helping him physically. However, Paul does experience cognitive issue like fatigue, sensory overload, short term memory problems and using incorrect words in conversation. He has had to scale his workload back significantly.
In 2018 Patricia's sister Rita had a major stroke. She was 46 years of age. She had an ischaemic stroke in the left side of her brain, which left her with severe right-side dyspraxia and aphasia. She now walks slowly with a 4-pronged stick and her communication is still a bit of a struggle because she is aphasic, but she tries to do the best she can. I have supported her through this experience and have been there from the beginning.
Patricia joined this group so she could help someone else who has had the same experience as her sister. She hopes with her sister’s experience Patricia can encourage someone to never give up and to keep on going.
Kylie’s world completely changed when her fit and active 49year old husband Scott suffered a stroke at home on a quiet Sunday night at the very start of the COVID19 pandemic. An Ischemic stroke in the left side of Scott’s brain left him without any movement on the right side of his body.
Two years on and Scott has regained his ability to walk and continues his rehab journey to improve stubborn physical deficits and neuro-fatigue. Kylie feels she’s undergone a crash-course in the science of neuroplasticity, the mysteries of the NDIS and the tenacity to advocate for a person with a disability. Most importantly, she’s discovered the importance of mental health support for a carer who is trying to be the all-round cheerleader of a stroke survivor.
Adrian O’Malley was on the cusp of an exciting life changing moment when he had a stroke at the age of 34 in 2006. Adrian’s wife was pregnant with their first child, but instead of the usual planning for an impending arrival Adrian was in hospital for nine weeks. He had to learn to walk and talk again. Ten days after Adrian was discharged, his daughter was born.
While Adrian’s recovery was incredibly challenging, he was motivated to get well and get moving for his family. He said his social worker seemed ill equipped to deal with someone in their 30s in a stroke unit who was motivated to achieve the best outcome possible.
Michael was almost 48 years old when his stroke occurred. He was home alone and collapsed to the floor. When he regained consciousness, Michael managed to call triple zero (000) and his wife. After surgery, subsequent minor strokes, pneumonia, temporary loss of vision and a shunt on his skull, Michael began his journey to recovery.
Michael describes stroke as something that hits you and your loved ones like a thunderbolt, it changes your life in an instant. The changes are wide ranging – physically, mentally, socially and financially. Michael experienced short term memory issues and said he would have been lost without the love and support of his family.
Sophie had just finished her morning run and was drinking a coffee in the sunshine in late 2020 when she started experiencing visual disturbances, dizziness and headache. She thought she was having a bad migraine, but she was having a stroke. Sophie did not seek medical attention until the following morning when she went to the emergency room and within an hour was having surgery to remove a blood clot from her brain. She was 31 with no risk factors for stroke, although they found a PFO in her heart and had that closed 8 months later.
Sophie is excited to be involved in the stroke community and is passionate about contributing to the conversation for young people impacted by stroke, the mental health challenges following stroke and the experience of LGBTQI+ survivors.