He can recite entire books of the Bible, with a fervent gleam in his eye as he regales us with tales of Daniel in the lion’s den, or the seven-headed dragon from Revelation. He is a voracious reader, a lover of art and literature and a brilliant debater.
Dad was capable of all this and more until he experienced a stroke in October 2017, following surgery for a leaky heart valve.
My father is still one of the smartest people I know, but his sharpness has been tempered by cognitive issues following the stroke, and his brilliance has dimmed by a welling sense of frustration over his new limitations.
Dad is not alone in feeling this way. Each year about 9500 people in New Zealand have a stroke. Stroke is New Zealand’s second biggest killer and a leading cause of serious adult disability. Moreover, stroke can affect people at any age.
In fact, according to Stroke Foundation NZ, 25%-30% of strokes are experienced by people under the age of 65 years. Alarmingly, they estimate the number of people experiencing a stroke will rise by 40% by 2028.
A stroke is caused by disruption to the blood supply to the brain. Broadly speaking, this happens either due to a blood clot (ischemic stroke) or bleeding in the brain (haemorrhagic stroke). A stroke can cause severe and permanent loss of function, depending on what part of the brain the stroke was in and the speed and success of treatment.
Last Sunday was World Stroke Day, an annual global awareness campaign aimed at raising awareness about stroke, its risk factors, prevention and treatment.
Some side effects of a stroke are immediately apparent — the characteristic weakness on one side of one’s body, the slurring of one’s speech, the problems with balance and co-ordination. But there are other side effects that aren’t so apparent — those which linger long after a stroke survivor has regained the ability to walk, or the speech therapy lessons have finished.
Such side effects include problems with both short-term and long-term memory, attention and concentration issues, and executive function deficits, making it harder for stroke survivors to manage daily tasks and responsibilities.
Stroke survivors also often have to contend with processing speed reduction, language and communication difficulties, as well as visuospatial impairments, which can affect one’s ability to judge distances, recognise objects or navigate one’s surroundings. Stroke can cause impaired reasoning and judgement and survivors often experience unfamiliar emotional changes, such as mood swings and depression.
Three weeks ago, I moved up to Edinburgh to begin a new job working in scientific communications for the Row Fogo Centre for research into ageing and the brain. Based in the Centre for Clinical Brain Sciences at the University of Edinburgh, the Row Fogo Centre’s primary objective is to enhance comprehension, diagnosis and therapy for Small Vessel Diseases (SVD), a significant contributor to stroke, cognitive deterioration, dementia and mobility issues.
I am no neuroscientist; in fact, I was woefully unqualified for this role, but I applied because of the impact my father’s stroke had on my life. At the time it happened I was 22, wrapped up in my own petty life struggles; drinking too much and studying too little. When that fateful phone call arrived, I paused my studies and flew home to assist Dad in his rehabilitation; I taught him the basics of NZ sign language and helped him with his physiotherapy and later, speech therapy.
But there was only so much I could do. In the months that followed Dad’s stroke, it was heartening to see him learn to walk again, and even though I had suffered through innumerous lectures and sermons from him growing up, I was happy to hear his booming voice again.
But it was extraordinarily painful to realise that the titan I had grown up with felt like a lesser version of himself. His memory — while still impressive— was no longer boundless; he struggled to find the right words, his head swam, he needed to lie down for several hours each afternoon.
The cognitive and emotional challenges faced by stroke survivors often go unnoticed, making it easy for others to underestimate or overlook the seriousness of their struggles. For survivors, this can be frustrating because they may look physically well, yet grapple with cognitive and emotional tasks. Moreover, stroke and its consequences are frequently met with a lack of awareness and understanding. As a result, survivors might face unwarranted stigma and misunderstandings from others who are unaware of the cognitive, physical or emotional difficulties they battle on a daily basis.
I take comfort in the fact that life-changing stroke research is being conducted by my colleagues and those further afield. One of my favourite studies I am assisting with at the Row Fogo Centre is the R4VaD study, which is a UK-wide observational study of cognitive, physical and neuropsychiatric complications after stroke. Stroke is known to be a cause of cognitive impairment and vascular dementia, with survivors often experiencing memory, thinking or mood changes or dementia after a stroke. However, not enough is yet known about how to treat these conditions. The R4VaD team seeks to find the answers to three fundamental questions: who will develop memory and thinking problems after stroke, why does this happen, how can we treat it?
Dr Louise Craig, who formerly worked as an annual follow up co-ordinator for the study said: "I hope the research provides understanding about why certain groups of individuals develop issues with memory and thinking after [a] stroke, how to identify these patients and gain insight into recovery pathways. This information could then be used to inform preventative management and treatment for conditions such as dementia after stroke. The rich data we are collecting could also be used to generate new research questions which are clinically important and relevant to those living with dementia after stroke."
She added: "R4VaD participants often report benefit from their participation too; viewing the follow-up assessment as contact that they wouldn’t necessarily receive and providing a strong sense of altruism. This is of particular importance to the most vulnerable members of the community we reach out to." Indeed, one patient said "The study team is doing an amazing job by contacting the patients at such a difficult time. Hearing a voice at the end of the telephone and someone checking on me feels amazing."
I wish it hadn’t taken a life-changing health incident on my father’s part to make me aware of the "invisible" side effects of stroke and the prejudice and intolerance many stroke survivors face. It’s up to us to provide open communication, empathy and necessary accommodations for stroke survivors to aid in their reintegration and recovery processes so that hopefully, they can continue to lead fulfilling and productive lives.
- Jean Balchin, a former English student at the University of Otago, has studied at Oxford University after being awarded a Rhodes Scholarship.
