National Stroke Week is 2-8 August 2021. At Headstart ABI Services we support many people with stroke, in fact around 25% of all of our consumers have suffered stroke. So it’s a very common type of brain injury and an area where much research is being done.
We’ve been supporting Ray since he had a massive stroke in 2006. For many of those years Ray has been helping the Hunter Medical Research Institute in Newcastle. At HMRI Ray helps University of Newcastle research scientists in the Priority Research Centre (PRC) for Stroke and Brain Injury.
““I’m volunteering and work with the researchers there to help them find people who might be interested in helping with research.”
Ray: This zoom pic is one of the university stroke researchers consulting with me about a study that I was helping her with. This was to hopefully improve the healthy eating habits of people who have survived strokes, in order to reduce the odds of having further strokes.
Over more than 5 years I have been a participant in a number of studies with scientists in various areas of recovery and treatments at HMRI. About 3 years ago my involvement grew and I became a volunteer Research Assistant with them as part of their Stroke Research Register-Hunter. In part that is helping the scientists with the creation of studies with the point of view of people living with stroke.
A large part of my efforts are in helping to promote recovery and prevention studies by the PRC scientists into the public and recruiting those who had a stroke, TIA, or other brain injury. We are hoping they will join our register. The register is a database of people who might want to be considered as volunteer participants in studies. When a study comes up that they may be suitable for, the person is contacted to see if they would be interested in being considered further. If conditions are right for both the volunteer and researcher, the person can join the study. They can also leave the study at any time they choose.
The work of the register also provides a way to get feedback to the researchers from those living with stroke as well as the larger community. I am looking for the help of those living with stroke, TIA’s or other brain injury to consider joining the register so that I can help researchers find participants that can give them the best quality information to be used in their studies. As a frequent participant myself, I think other volunteers would find it interesting, satisfying and a pleasant experience.
I work helping them design research projects, for instance a diet study that supports people to eat well for better health after stroke and for stroke prevention. I’ve been doing some talks for them too, providing information to the public and helping them make some videos and social media. There’s a lot I can’t do after my stroke, but this is one of the things I can do and it’s also giving back.
Right now there are several studies that are currently recruiting including several about exercise, nutrition, using affected arms, fatigue, making a stroke-related website, and medical/social experiences after leaving hospital. There are always new studies that look for potential volunteers on the register too.
“It’s all about helping people who come after us to cope better with stroke and brain injury. We’re looking for people to help me help the researchers to help us.”
Help Ray help others with ABI. Find out more about joining the HMRI Stroke Research Register-Hunter. Find our more and register here:
Read more about Ray’s stroke story here.
