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Aboriginal and Torres Strait Islander people


Our Stroke Journey

Our Stroke Journey is a booklet for Aboriginal and Torres Strait Islander people.

Our Stroke Journey covers everything people need to know about life after a stroke. It includes stories from Aboriginal and Torres Strait Islander survivors of stroke, families, and health workers.

Our Stroke Journey answers these questions:

  • What is a stroke?
  • How will stroke change me?
  • How do I look after my health?
  • How do I get ready to go home?
  • How do I sort things out once I'm at home?

Download Our Stroke Journey

If you would like a printed copy of Our Stroke Journey, please contact  StrokeLine on 1800 787 653 or email strokeline@strokefoundation.org.au.

Thank you to everyone who contributed to developing Our Stroke Journey. Our particular thanks go to the people who share their story in this book, and the Queensland Aboriginal and Islander Health Council. We also thank the Elizabeth and Barry Davies Charitable Foundation and Federal Parliament Press Gallery Mid-Winter Ball for their generous support.

Warning: This booklet and stories below may contain images, stories and names of Aboriginal and Torres Strait Islander people who have passed.

More information and support

Stroke stories

  • Justin

    Survivor of stroke and proud Noongar man

    I had a stroke in 2014 when I was 32 years old. I was at home with my wife when it happened. She noticed that I was walking funny, and she took me to hospital. I was in hospital for around one month and needed rehab to learn to walk again.   I struggled not smoking…

    I had a stroke in 2014 when I was 32 years old. I was at home with my wife when it happened. She noticed that I was walking funny, and she took me to hospital. I was in hospital for around one month and needed rehab to learn to walk again.  

    I struggled not smoking while in hospital, the nicotine withdrawal was very difficult. I was a very disruptive and angry patient because I didn’t have any nicotine patches. Once they worked out that I needed a patch, I was fine. 

    When I was in hospital, I was desperate to go home again. Once I got home, it was very different. I found a lot of things strange and wanted to go back to hospital because I felt more comfortable there. 

    I went back to hospital for outpatient rehab for speech therapy, occupational therapy and physiotherapy. I am grateful that I am now able to walk again, but I have lost the use of my right arm which makes life a bit challenging at times.  

    The stroke also affected my family. I have four children, but I lost some of the bond with them when I was unwell. I missed out on taking them to school, seeing them play sport and all those things. There was definitely a lot of strain on my wife and family. I am trying to make up for lost time with my grandchildren now. 

    I have made many changes to my lifestyle since my stroke. I’ve quit smoking and drinking alcohol. I used to love sugar, I don’t have sugar in my tea or coffee now. I eat a lot of fresh food and vegetables and only buy good quality meat. I don’t want to preach to people about how they live their lives, but I would recommend doing things in moderation, stay active, eat good food and quit the smokes. 

    These days I really enjoy getting out for a drive. I‘ve had my car modified so I can drive without using my right arm. Driving gives me my freedom. I can do whatever I want when I’m out and I like being in the car by myself. It makes me happy.  

    If I met a young person who had a stroke, my advice would be to take your time. There’s no rush with recovery, there is no race. Because that’s one thing that I did, I rushed a lot of things to try and get back to how things used to be. Try and relax because when a stroke happens, life changes, everything slows down. Take your time.

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  • Harry

    Aboriginal Liaison Officer and proud Anangu man

    I have been working at Alice Springs Hospital as an Aboriginal Liaison Officer (ALO) and interpreter for the past three and a half years.   In my team there are nine ALOs who speak eight different local languages. Our role involves looking after cultural needs, interpreting and discussing patients’ care needs. We educate non-Indigenous hospital staff…

    I have been working at Alice Springs Hospital as an Aboriginal Liaison Officer (ALO) and interpreter for the past three and a half years.  

    In my team there are nine ALOs who speak eight different local languages. Our role involves looking after cultural needs, interpreting and discussing patients’ care needs. We educate non-Indigenous hospital staff about our culture so they can understand patients better.  

    Interpreting and breaking down the language barrier is a big part of the job. For most of our people, English is our third, fourth or fifth language, it is like a foreign language. I was lucky to learn English at school and still have my native language. 

    I am able to teach my team how to communicate with patients from Uluru, the desert region where I am from. I also help break down medical jargon into simple language that patients can relate to. 

    My job, and my team’s job is to help survivors of stroke and their families understand their needs, make them feel comfortable, and support them to get better and return home to Country.  

    If anyone has a problem or something is bothering them, whether it’s got to do with nursing, their care or cultural needs, they can always talk to us, the ALOs. 

    Homesickness and loneliness can be a big problem. Sometimes people, especially the elderly, have never been to hospital before, and some of them have never left their community. We’re there to help and show we understand how they feel. It can just be saying, “Look, we come from community as well, but we live in town and work here to help out people like you that come in from remote communities.” People get homesick and lonely because they are far from where they belong. Their belonging is back on country. 

    The shirt that I am wearing, it was designed by a fellow ALO and symbolises patient centered care. It represents a sick person walking in to see the specialists in the hospital, coming in with weak footprints, then going out after seeing the specialist, with healthy, strong footprints. Our work is all about the patient’s journey. The most rewarding part of my job is helping patients on their recovery journey.

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  • Annette and Sheena

    Carers and proud Yorta Yorta women

    John was Annette’s husband and Sheena’s dad.  When John was 40 years old, he had a stroke. John woke up one morning with his hand closed. He thought he had slept on it funny, but John’s hand was closed because he had suffered a stroke and it would no longer open.   The stroke affected the…

    John was Annette’s husband and Sheena’s dad. 

    When John was 40 years old, he had a stroke. John woke up one morning with his hand closed. He thought he had slept on it funny, but John’s hand was closed because he had suffered a stroke and it would no longer open.  

    The stroke affected the right side of John’s body which meant he couldn’t write, play tennis, he really couldn’t do much. John was totally reliant on us for more than 12 months. We had to comb his hair, cut up his food, do up his shirt buttons, everything. Muscle spasms left John in a lot of pain. It was a stressful time. Everyday we supported him to stay mentally strong. 

    We didn’t get any information about stroke. We didn’t have a regular doctor or rehabilitation appointments. We didn’t meet other people who had been impacted by stroke. We didn’t even know that the carer’s pension existed back then. It was a very hard time, we had no support from anyone, but we did the best we could.  

    After 12 months John got the use of his right hand back, then his leg came good. After two to three years, he was able to play lawn bowls again which was a great achievement. We look back and are filled with pride that we worked together as a family, stuck it out, and supported him throughout his recovery.  

    For people out there reading this, we want you to know that there is hope after stroke. Our family went through some tough times, but John lived another 20 rich and meaningful years after his strokes. Our message is to have high expectations and hope for your recovery and rehabilitation. It is possible to have a long, active life after stroke. 

    Our advice for other carers would be to speak up. Talk to a professional and get the help you need for your loved one. If their pain is not being managed or their sleep or mood isn’t good, tell someone. If their medication isn’t helping, tell someone. If you aren’t coping, tell someone. Whether it’s a doctor, nurse or the Stroke Foundation they can ring you up and check in to ask how you are doing. Support is key.  

    As a carer it’s also important to have your own life too. Read books, go to the pictures, keep active. You need something to get away. A carer has got to have time out.

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  • Joe

    Survivor of stroke and proud Kooma man with friend and colleague Rachel

    I had my first stroke when I was in my early 50’s, in a supermarket of all places. I was trying to eat a pie, and I couldn’t control my arm and it ended up all over my face.  I was lucky that I knew the signs of stroke, so I sat down on the…

    I had my first stroke when I was in my early 50’s, in a supermarket of all places. I was trying to eat a pie, and I couldn’t control my arm and it ended up all over my face. 

    I was lucky that I knew the signs of stroke, so I sat down on the floor and told my work-mate to call triple zero (000). I was taken to hospital quickly, which saved me from further damage. 

    I’ve had a few strokes. Each felt very different. Sometimes it was the arm, another time I couldn’t swallow, another time I vomited. My last stroke felt like I was on a rocky boat out to sea.  

    It’s so important to know the signs of stroke and to get to hospital immediately. My friend taught me about the signs of stroke and what to look out for. I owe my life to her, as without this knowledge I wouldn’t have known what was happening to me. I might not have thought to rush to hospital as quick as I did each time.  

    Looking back, there is always good and bad in life after stroke. It has been a hard road to recovery at times. After my first stroke I lost a lot of my independence and positivity for around six months. I needed help to walk, I had some very dark days.  

    I kept thinking `Was I ever going to work again? Am I going to have another stroke? Is the next one going to be worse than the one before? Will I survive it?‘  

    I used to wake up at two o’clock in the morning and try not to think about it. This worry also caused lack of sleep and exhaustion, which contributed to my depression. I tried really hard to pull myself out of it, always reminding myself there was someone else out there with it worse than me. I also quit smoking and drinking which really helped me get healthy and back on track. With help from my doctor, family and friends, I have been a sober non-smoker now for more than five years.  

    I’ve given a few talks about my stroke experience to the community to spread awareness of the signs. When people ask for advice, I always say: 

    • Quit smoking, keep your stress levels down, drink in moderation. 

    • Have your health check-ups, listen to your doctors, and take your medication. 

    • Ask for help. It is always available. 

    People are there to support you because they love you. If they didn’t love you, they wouldn’t be there. That’s a big thing to remember.
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  • Angela

    Stroke Neurologist and proud Kwiambal/Gumbaynggirr woman

    I’m a stroke neurologist at two hospitals in Melbourne. I visit the Northern Territory and look after people who live in regional and remote areas using telehealth—video and telephone calls.   Most people are very worried and scared after experiencing stroke. They come into the emergency department, some patients not moving normally and having trouble speaking…

    I’m a stroke neurologist at two hospitals in Melbourne. I visit the Northern Territory and look after people who live in regional and remote areas using telehealth—video and telephone calls.  

    Most people are very worried and scared after experiencing stroke. They come into the emergency department, some patients not moving normally and having trouble speaking and seeing, which can be very overwhelming. Being off Country, away from their communities and families, can add to the stress. For someone who might not have English as their first language it is incredibly scary.  

    What I say to people when they come into hospital is to ask a lot of questions. If your questions aren’t answered in a way you understand, ask “What did you mean by that?” or ask someone else. Make sure you get the information you need to be able to understand your diagnosis and make changes to prevent further strokes.  

    Sometimes the questions people ask are hard for us to answer. Questions like, “When will I go back to work?”, “Am I going to be able to care for my children?” or “Will I ever walk again?” These questions can be tough, but we will always try and give the most accurate answers.  

    If you feel comfortable, let people at the hospital know that you are an Aboriginal or Torres Strait Islander person. Then they can allocate an Aboriginal Liaison Officer, who can help bridge the disconnect between your culture and the culture within the hospital. Interpreters are also very important in these situations.  

    It is common for Aboriginal and Torres Strait Islander people when they are feeling unwell to just stay home. But it is so important that if you recognise the F.A.S.T. signs in yourself or someone else that you call an ambulance and get to a hospital straight away. As we always say, “time is brain”. 

    It was a long journey to get to the position I am now in. I started medical school in 2007 and became qualified as a specialist after 13 years of study and training. This gave me the skills and experience to become the Aboriginal representative on the Australian Stroke Alliance board. I’m very proud of that.

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  • Rebecca

    Aboriginal Brain Injury Coordinator and proud Yamatji/Ngadju woman

    I have been an Aboriginal Brain Injury Coordinator (ABIC) since 2019, through a project called “The Healing Right Way”, which I believe is the first in Australia. It is a role that was created because Aboriginal people in WA said it would help in their recovery journey.   As an ABIC my role is to support…

    I have been an Aboriginal Brain Injury Coordinator (ABIC) since 2019, through a project called “The Healing Right Way”, which I believe is the first in Australia. It is a role that was created because Aboriginal people in WA said it would help in their recovery journey.  

    As an ABIC my role is to support our clients who’ve had a stroke or a traumatic brain injury. I coordinate their care and refer them to services that help with their recovery and rehabilitation.  

    For many people when they come into the hospital it can be hard to understand what the doctors or nurses are saying to them. I remind people “If you don’t know something, ask the doctor, the nurses, the occupational therapist, the physiotherapist or even ask me. Don’t be shame to ask questions.”  

    If our clients would like us there when they talk to the doctors, we can help them draw out the information in a way that they understand, that is also a part of what we do as an ABIC. We do a lot of support work, including emotional support.  

    Sometimes we have clients wanting to leave the hospital early and go home. We try to encourage them to stay and wait until the doctors say that it’s okay to go home and that it is very important to have services in place before they leave to assist in their recovery.  

    Once our clients are back in the community, it can be a mixed experience. Many feel happy to be back in their own home, but it can also be a challenge without the same support they had in hospital. That’s why it is important to have services in place and continue the exercises and rehabilitation. My role also is to check on our clients once they return home. As an ABIC we are there to support the families of our clients and help in any way that we can, where possible. 

    My advice would be that it’s hard at first, but you’ve just got to hang in there and keep going. I know there are days where you want to give up but eventually things will get better. In some cases, it won’t be straight away. You’ve got to work hard and make the most of the services that are available to you, that’s why they are there to help you.  

    I just want everyone I work with to know that someone cares about their rehab and recovery and wants them to get better. That’s the most important part of my job.

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