A reflection on Young Stroke in Australia

By Barbara Wolfenden, BA, BSW (Hons), PhD candidate. La Trobe University, also The Florey Institute of Neuroscience and Mental Health

‘You are too young to have a stroke, it must be something else…’, was my bewildering inpatient encounter with young stroke in 2004. I was discharged home after 36 hours of observation, with medication to treat migraine, but no further pursuit of diagnosis. I was treated free-of-charge in a public hospital. I retrieved my Discharge Forms under the Freedom of Information Act. Recorded on my discharge notes was, ‘Mild headache with shimmering in eye but unlike usual migraine – quickly relieved with paracetamol’. Crossed out under Principal Diagnosis was, ‘Probable left cerebral infarct’; replaced with, ‘Migraine … experiencing dysphasia and right hemiparesis’. It was shocking to me that medical staff involved seemed unable to diagnose stroke with Face-Arm-Speech, headache, dizziness symptoms recorded, also Patent Foramen Ovale (PFO) … because I was too young? I was sent home with an inconclusive diagnosis seemingly based on age, and no referral for rehabilitation, or information on what to expect particularly when I returned to work in 2 weeks time. Although I didn’t realize it at the time, my experience became the launching pad for my research career.

I wanted answers, and if the medical staff who managed my stroke in the acute phase could not conclusively diagnose or inform me, I’d take control and become an expert of my own condition. Primarily due to the PFO found during my initial inpatient hospitalisation, and residual impairments, I was diagnosed with cryptogenic stroke by a cardiologist in the privately funded health system (requiring insurance to access) at 5 months post-stroke. To fast forward, at approximately 2 years post-stroke I applied to undertake my second undergraduate degree and was accepted into university. At approximately 10 years post-stroke, a world leading neurologist from a leading Australian Stroke Unit identified my lesion site for the first time, on both earlier and 10 year MRI/CT scans. Disturbingly, the MRI/CT imaging services inaccurately reported both lots of scans as, ‘Normal’.

By 2014, as per the Acute Stroke Service Framework 2011 (National Stroke Foundation, 2011), specialized stroke units were operating in various major Australian hospitals. Stroke telemedicine was being developed between certain rural hospitals and expert stroke neurologists (Cadilhac et al., 2014); also emerging was the practice of endovascular thrombectomy (Campbell et al., 2015). My hope, supported by continuing advocacy, is that diagnosis and timely medical treatment of Young Stroke improves globally. Some young survivors certainly report having recently benefitted from best practice stroke treatment (Van Den Berg, 2015). Unfortunately, Young Stroke Survivor (YSS) closed online forums continue to evidence reports of misdiagnosis, thus lacking rehabilitation; similar to many survivors following mild stroke (Finch et al., 2017).

In Australia, due recognition for Young Stroke has been slow. Since approximately 2007 social media has been integral in connecting young survivors. YSS now share experiential wisdom among themselves, addressing various needs. Australian research has found higher unmet needs among YSS than survivors over 65 years of age (Andrew et al., 2014). Over approximately the past 5 years, YSS have received some public exposure through Australian Stroke Foundation mail-outs and website. In 2016 the Stroke Foundation joined Brain Injury Australia in hosting a well-attended Young Stroke Forum, exposing young stroke as a health condition requiring greater medical and secular attention. In Australia, YSS continue to call for long-term continuity and coordination of care (including in chronicity); also young stroke public awareness campaigns to equal those of current stroke prevention campaigns. How to better support YSS in their community endeavours, including within workplaces, requires massive exposure. Collectively, Australian YSS are taking on not only voluntary social media and advocacy roles, but qualified roles, eg. providing workshops/lectures addressing aspects of life-after stroke (Gee, 2017). Similarly, YSS are not only participating in research; some are qualifying as researchers in stroke from Honours through to PhD (Codd, 2015; Levin, 2016; McGurk, 2009), contributing towards improvements at the macro systemic level.

Young stroke recovery involves contemplation and/or resumption of employment while re-establishing identity (Wolfenden & Grace, 2009; Wolfenden & Grace, 2012). This is not easy. Psychosocial and financial vulnerability needs to be better protected, with empowerment of YSS supported (Wolfenden & Grace, 2015). Balancing personal challenges with personal coping, while navigating frequently unstructured environments, and complex life-stage demands (Wolfenden, Carey, & Douglas, 2015), is how YSS develop their stroke expertise in recovery. Their voices hold value. I am privileged to bring dual expertise (experiential and academic/professional) to my research in support of improving activity participation outcomes with this community (Grace & Wolfenden, 2017).

REFERENCES

Andrew, N., Kilkenny, M., Naylor, R., Purvis, T., Lalor, E., Moloczij, N., . . . National Stroke Foundation. (2014). Understanding long-term unmet needs in Australian survivors of stroke. International Journal of Stroke, 9, 106-112. doi: 10.1111/ijs.12325

Cadilhac, D., Moloczij, N., Denisenko, S., Dewey, H., Disler, P., Winzar, B., . . . Bladin, C. (2014). Establishment of an Effective Acute Stroke Telemedicine Program for Australia: Protocol for the Victorian Stroke Telemedicine Project. International Journal of Stroke, 9(2), 252-258. doi: 10.1111/ijs.12137

Campbell, B., Donnan, G., Lees, K., Hacke, W., Khatri, P., Hill, M., . . . Davis, S. (2015). Endovascular stent thrombectomy: The new standard of care for large vessel ischaemic stroke. The Lancet Neurology, 14(8), 846-854. doi: http://dx.doi.org/10.1016/S1474-4422(15)00140-4

Codd, L. (2015). The role of neurogenesis in functional recovery in an Endothelin-1-induced model of hippocampal stroke. PhD Neuroscience, The University of Queensland.

Finch, E., Foster, M., Fleming, J., Aitken, P., Willimas, I., & Cruwys, T. (2017). Undetected and underserved: the untold story of patients who had a minor stroke. Medical Journal of Australia, 206(8), 337-338. doi: 10.5694/mja16.01009

Gee, E. (2017). Emma Gee: Inspirational speaker and author Retrieved 2 August, 2017, from http://emma-gee.com/

Grace, M., & Wolfenden, B. (2017). A small qualitative peer research project exploring the return-to-work experiences of young stroke survivors. SAGE research methods cases. Retrieved from http://methods.sagepub.com/case/qualitative-peer-research-return-to-work-experiences-young-stroke-survivors doi:10.4135/9781526423689

Levin, N., (Ed.). (2016). Stroke scientist and survivor leads research push at the Queensland Brain Institute. Inspire, Winter 2016, 22-23.

McGurk, K. (2009). The perception of peer support by young stroke survivors. Bachelor of Science (Psychology)

Honours. Retrieved from http://ro.ecu.edu.au/theses_hons/ (1432)

National Stroke Foundation. (2011). Acute Stroke Service Framework 2011. Retrieved from https://strokefoundation.org.au/What-we-do/Treatment-programs/Clinical-guidelines/National-stroke-services-frameworks

Van Den Berg, L. (2015, 12 February 2015). New treatment for severe strokes, Herald Sun. Retrieved from http://www.heraldsun.com.au/news/victoria/new-treatment-for-severe-strokes/news-story/4e7c8a944248e363d825df9d761cd642

Wolfenden, B., Carey, L., & Douglas, J. (2015). Younger adults’ experiences of activity participation after stroke: Synthesis of qualitative literature. Paper presented at the Stroke 2015 Conference, Melbourne Convention and Exhibition Centre.

Wolfenden, B., & Grace, M. (2009). Returning to work after stroke: a review. International Journal of Rehabilitation Research, 32(2), 93-97. doi: 10.1097/MRR.0b013e328325a358

Wolfenden, B., & Grace, M. (2012). Identity continuity in the face of biographical disruption: ‘It’s the same me’. Brain Impairment, 13(2), 203-211. doi: 10.1017/BrImp.2012.16

Wolfenden, B., & Grace, M. (2015). Vulnerability and post-stroke experiences of working-age survivors during recovery. SAGE Open, 5(4), 1-14. doi: 10.1177/2158244015612877