Fabulous Young Stroke Research Forum

This post was originally published on the Stroke Recovery Research CRE blog.

By Jan Chamberlain

In November we were pleased to host a forum devoted to young stroke, where we heard the latest research and discussed the experiences of young stroke survivors. A/Prof Sean Dukelow from the University of Calgary’s Stroke Robotics and Recovery Lab kicked off the afternoon with a talk on robotics in stroke rehabilitation. The audience was heartened to hear Sean debunk the proportional theory of stroke recovery: ‘Recovery happens at different timelines for different impairments, so it’s not a one size fits all deal.’

Sean Dukelow on robotics in stroke rehabilitation

Short talks reveal the latest in young stroke research

Our program of short talks started with Jessica Shipley, a junior doctor at the Royal Melbourne Hospital, followed by David Sapuppo, who received his Doctor of Medicine from Melbourne University in 2017. Both presenters have researched the unmet needs of young stroke survivors. Jessica noted the lack of awareness of young stroke in the community – as one research participant mentioned, ‘we all know kids get cancer, why don’t we know young people have strokes?’

Our next three speakers focused on interventions to help return to work after stroke. Sophie O’Keefe, a PhD candidate and academic at La Trobe University, emphasised the importance of clinicians providing ‘belief in the future work potential of young stroke survivors.’ Rehabilitation often focuses on self-care and domestic tasks, but interventions to return to work should be implemented early in the hospital stay.

Toni Withiel, a neuropsychology registrar and stroke survivor, looked at memory rehabilitation after stroke for her recently completed Doctorate in Neuropsychology. She compared group sessions to a computer-based program to see which most improved memory. Also looking at memory was David Lawson, who had a stroke aged 19 that left him with dysphasia and sensorimotor problems. His doctorate work showed that using telehealth for memory rehabilitation could be as effective as face-to-face programs – a great advancement for those in remote areas.

Barb Wolfenden, a social worker, stroke survivor, and advocate, has just completed her PhD – and just graduated as this blog goes online! Her talk, ‘The impact of stroke on activity and participation during young and middle age’, revealed some fascinating differences in the activities of young and older stroke survivors.

Jessica Keating delivers her talk via video

Jessica Keating joined us via a recorded video, speaking on ‘Toward Better Services for Young Survivors’. Jessica spent 10 months at the Florey working with wonderful scientists and community consultants on a survey about young stroke survivors’ needs. She continues this work as she studies in the United States. Jessica commented on how amazing it was to work with young stroke survivors to design her survey. She believes we can get valuable information out of the survey, but we need more men to complete it (see the box below).

Rosy Walters is a physiotherapist with a primary interest in stroke rehabilitation. She was supported by a clinical stipend from the Centre of Research Excellence to undertake a project looking at rehabilitation and outcomes of young stroke survivors using the data from A Very Early Rehabilitation Trial (AVERT). She recorded a talk titled ‘Post-acute rehabilitation service use and outcomes for working age stroke (≤65 years) in Australia, UK and SE Asia: Data from the AVERT trial’. Unfortunately, we ran out of time to play the video. We will look at ways of getting this online so anyone can listen to the talk.

‘In conversation’: on stroke, changing perspectives, and becoming involved in research

The short presentations were followed by a panel led by Caleb Rixon, a stroke survivor who started the Genyus network, where every person touched by trauma has a voice and can connect with fellow survivors. The panel consisted entirely of stroke survivors: researchers Barbara, Toni and David, and Garry Oates who participated in Toni’s research. A big shout out to Garry who came to the forum from country Victoria to speak about his experience of stroke and participating in stroke research.

Caleb Rixon and the rest of the panel

The forum was streamed live on Facebook and you can see still view it here. If you attended the forum, we would love your feedback on what our next consumer focussed event should look like.

You can connect with some of the presenters on Twitter:

Sophie O’Keefe @SophieAOKeefe

David Lawson @wentworthlawson

Barb Wolfenden @bawolfenden

Jessica Keating @jessicarkeating

Caleb Rixon @calebrixon

Sean Dukelow @RobotLabUC

How Can We Meet the Needs of Young Stroke Survivors?

The Florey Institute of Neuroscience and Mental Health is recruiting people who have had a stroke for a study on addressing the needs of young stroke survivors.

Participants should be aged 18-55 years and have a history of stroke.

Participation involves filling out an online questionnaire that includes questions about your background, your needs since your stroke, and ways you might want your needs to be addressed.  The questionnaire should take no more than 20 to 30 minutes to complete.

If you are interested, please click on this link for more information: https://bit.ly/2HZSTmZ

This study has been approved by the Austin Health Human Research Ethics Committee Reference Number HREC/18/Austin/86.