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Tuesday, 2 March 2021

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NICE – Centre for Movement Disorders: No limits to stroke survival – busting the myths

Brin’s Story

Brin has cycled over a thousand miles on his exercise bike during the lockdown, and he’s set to pedal many more by Monday 31 August. Extreme sport from home, plenty of miles to cover day in, day out – why do it? Where does this dedication, determination and physical strength come from?

Brin survived a stroke 15 years ago at the age of 47, following a cycling accident that resulted in an acquired brain injury. The stroke affected the right side of Brin’s brain as opposed to the left, which is uncommon. As you might imagine, this time marked a huge, challenging adjustment to Brin’s physical abilities, muscle strength and his (already) relentless and increasingly demanding working life, which resulted in early retirement from his senior teaching role at a local college.

These physical aspects of stroke survival are often visible, sometimes expected and usually clear to see. But the root of Brin’s stroke, and his unique determination to keep pedalling on his exercise bike through lockdown, can remain unaddressed. Brin’s life after his stroke has been marked with many stories, endless perseverance and a huge amount of curiosity. From the determination to wash and dress independently in the early days, to deep involvement with neurological research and navigating new dimensions of his personality.

Brin describes a profound feeling of your confidence being completely stripped of him. Perhaps you can’t attribute it to any physical task you’re trying to do as you used to, or any recent moment that’s knocked your self-esteem. It was a difficult psychological state that Brin could edge out of though, with the unwavering support of his wife, Karen.

Brin abseils Fort Dunlop

His interpretations became literal to the point that Brin’s attitude was becoming unrecognisable; if a nurse in hospital said that they’d be with him in a minute, he would count that minute and expect exactness. An outcome that came with some discomfort for friends and family was a boundary lifting around language. Making inappropriate comments and smutty remarks became the norm at one stage.

For Brin, these challenges, changes and new developments in his personality and physical life were not fixed. They simply could not thrive in the environment Brin developed within his positive, determined state of mind and endless curiosity. He was faced with outcomes of a right-sided stroke that are rarely talked about, and have lower levels of research backing them up, compared with standardised behaviours connected to the more common left-sided stroke.

Brin’s response was to investigate, leaning into his perseverance and bloody-minded determination. He wanted to both overcome and understand the challenge of stroke survival that no one can see. He flipped his situation the other way, dedicating his focus and intelligence to how he responded to his stroke.

Something important to Brin was to dismantle the damaging myth that stroke recovery can only take place in the first 6 months. His pragmatism and practical attitude, and always working just outside his comfort zone, were qualities that led Brin to what his life was really about post-stroke.

Brin zip wires through Costa Rica

With a dedication to always caring about what you do, say and contribute to, Brin became part of local stroke research initiatives. He volunteered with a project at The University of Birmingham and took part in research trials. He also volunteered with a community group run by the Stroke Association. In time, Brin was recognised for his skills in teaching, education and practical application to neurological stroke research.

Brin’s resilience and focus led him to become a popular, well-known speaker, delivering presentations at universities up and down the country to aspiring nurses and physiotherapists. He continues to share his learnings and conviction in the fact that there are no limits to stroke recovery; there is no plateau. His expertise as a speaker and involvement in stroke research has contributed hugely to overcoming the unexplored confidence dips in his recovery. Linked to this is the vast improvement in Brin’s dysarthria, a motor speech disorder that follows a neurological injury.

Brin’s focus on the continuing opportunities in stroke recovery, his capabilities and resilience have enabled him to play a crucial role in this very work. His first few years felt tough, with the hidden side of his stroke not yet emerging. From a step out of his wheelchair in the early days to an active life that has seen him visit Mexico and France with his three sons, and travel the world with his wife. He has unearthed the intense and complex psychological side of stroke recovery that can be left unexplored, and kept moving past the barriers.

Brin’s cycling challenge is seeing him pedal virtually from Birmingham to Budapest. It initially started on 20 March as a simple goal to cycle the 400 miles to the Etoile, Paris, an achievement Brin promised himself he’d make after his stroke. By 4 May, he’d reached Paris so decided to continue onwards by creating a second challenge. Brin has driven several times to his cousin’s house since his stroke, located in Chévre Morte, France: another 275 miles. He achieved this by his 60th birthday on 25 May and this, along with the lockdown circumstances, drove Brin to keep going further.

Brin received support from NICE – Centre for Movement Disorders 15 years ago, their Conductive Education work opened his eyes to stroke survival being the process you make it, regaining physical and psychological strength by exploring the ability within you, not purely assessing levels of ‘disability’. Conductive Education originated in Budapest, Hungary before the work was brought over to the UK.

This final challenge marks 15 years of improvement since Brin’s stroke. His goal is to reach Budapest on Monday 31 August: 15 years to the day since his stroke.

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