by Gillian Mason

Newcastle stroke survivors say to me regularly that they’d like to see more of our researchers, to understand what’s going on in the ‘fancy building on the hill’ and find out what our work means for them. Some share that they feel that health professionals and researchers might not actually know what it’s like to live with stroke, and they want to share their stories to help us understand, so we can help others – if anyone would listen!

The Hunter Stroke Research Volunteer Register consists now of over 400 people who have generously agreed to participate in our local research. Two of our consumer reps, Meredith Burke and Rachael Peak did some local research for us to find out exactly how the local community would be most likely to connect with us and what they want to know. We came up with the idea for the event, and engaged 26 (!) speakers – researchers, clinicians and stroke survivors to come together and share bite-sized stories about their experiences, discoveries and research updates.

Spotlight on Stroke , May 2, 2018, was supported by HMRI and our Priority Research Centre for Stroke and Brain Injury, and came together as two sell-out (free) seminars, with an expo between – hosted at the local bowling club. It was buzzing! Hundreds of people attended in person, and we had thousands join in online via a Facebook live video-stream.

Speakers volunteered their time and effort, plus almost all of our local CRE researchers, some local stroke groups and service providers came to chat during expo time – this generosity created a massive impact! As, Caleb Rixon (founder of  genyus network and one of nine presenters with a lived experience of stroke), told the audience (via videoconference from Adelaide), we were ‘disrupting the isolation industry!’ People commented that hearing from others who have been through what they have, provided reassurance that there are others who truly understand them. Helene Rabbitt, who participated in the stress in stroke study, told how taking part in the study and seeing how passionate our researchers are about making a difference gave her hope.

Control deck: best seat in the house! Caleb Rixon, founder genyus network, zooming from Adelaide

Control deck: best seat in the house! Caleb Rixon, founder genyus network, zooming from Adelaide

Highlights included Dr Lin Kooi Ong’s presentation on the game-changing lab discovery that human growth hormone supplementation may fertilise brain cells for better recovery and regeneration and Sarah Valkenborghs masterclass of exercise ‘hacks’. The panel discussions, hosted by Meredith were fabulous; she picked the brains of Prof Michael Nilsson and A/Prof Michael Pollack on post-stroke fatigue, and Dr Lin Kooi Ong and Prof Frini Karayanidis on stress and cognitive changes after stroke. Ross Pearson, stroke survivor and disability advocate, insisted that the term plateau should only be used to describe landscapes and not a stage of stroke recovery, as he showed us pictures taken on his remarkable tandem bicycle trek across the Nullarbor. During this trip, he wrangled back use of his hemiplegic arm and leg one pedal-stroke at a time! Ray Gray told us how riding his modified tricycle around his community saw his universe open up again, despite having been told that he’d be lucky to walk again after his stroke. A/Prof Coralie English showed people where to find the insider info that health professionals know, on the guidelines for stroke rehab.

Ross Pearson contemplating the landscape

Ross Pearson contemplating the landscape

 

The best part of the day for me was seeing the conversations between people with stroke, researchers and clinicians continue into the evening, more than 8 hours on.

  • In case you missed it, we’ve got you covered! Watch: Seminar 1 and Seminar 2 on the PRC Facebook page.

We appreciate the extra support from the Stroke Foundation, and Independent Mobility and Rehab.

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