Stroke survivors reveal recovery struggle

Paul Hodson, left, and Graham McGuire. Picture:  Ian Rutherford
Paul Hodson, left, and Graham McGuire. Picture: Ian Rutherford
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A RUSTLING crisp packet is just background noise to most of us, yet it’s enough to cause Graham McGuire to snap.

He’s been talking, quite clearly and very precisely, about his recovery from a stroke. Now, as fellow stroke survivor Paul Hodson crunches up the empty packet, the sound proves just too distracting for him to continue.

“Will you please stop that?” he suddenly barks, and Paul, who like Graham battles daily with communication condition aphasia, is suitably chastised. He apologises, puts the bag down and quietly folds his arms.

Graham’s blunt outburst might have seemed unnecessary to some – after all, a scrunched up crisp packet doesn’t make that much noise. But it turns out that even the droning sound of traffic outside, or the chatter of people in another room, is enough to fog Graham’s fragile concentration, making every word he utters an even bigger challenge than it already is.

Paul, sitting opposite in a room within Stroke Association’s Leith offices, isn’t offended at all. For aphasia – the frustrating aftereffect that hits a third of the 120,000 stroke survivors in Scotland – also left him struggling to speak, read, write and, devastating for someone who once worked high up in the city’s banking industry, numerically dysfunctional.

Life post-stroke for them both is a giant leap away from broadcaster Andrew Marr. He recently returned to television screens following his stroke in January with the only hint that all was not completely right being a walking stick propped up at the side of his chair. As he set about grilling politicians and chatting to his Sunday morning guests about the big issues of the week, his knack for untangling complex issues and putting squirming interviewees on the spot seemed as sharp as ever.

The Loretto School-educated presenter’s stroke left him with some mobility problems, however pictures of him this week exercising in a park without the need for his cane suggest he’s winning the battle against those.

But for Graham and Paul – like Marr, both were in their early fifties and at the peak of their careers at the time – the confusion as they woke up in hospital having had a stroke was compounded by the horrible realisation they had been left with one of its most frustrating aftereffects.

Suddenly, simply trying to communicate basic needs – never mind emulating Marr’s incisive brain power or returning to work – posed a daily challenge of epic proportions.

Now, in a bid to create greater understanding of aphasia, the charity Stroke Association has launched a campaign which primarily targets health workers who are often stroke survivors’ first port of call and yet who may be unaware of just how debilitating it can be.

New research from the charity, released to mark Aphasia Month, reveals 43 per cent of those affected found communicating with their GP difficult – raising concerns over the standard of care they might ultimately receive. And nearly a third quizzed indicated problems being understood by their GP.

Certainly in Graham and Paul’s case, aphasia – the result of damage to the language centres of the brain and which can also be caused by tumours, trauma or neurological illness – didn’t just devastate their ability to communicate normally, it wrecked their successful careers and altered their lives forever.

“I’ll never be back to normal,” explains Graham, now 67, who held an academic post at Strathclyde University and worked for the Leith-based Centre for Advanced Marine Studies at the time of his stroke in October 1997.

“Even the noise of traffic which most people don’t notice can prevent sensible conversation. You’re distracted all the time by noises which wouldn’t bother other people.”

Today, his speech seems fine, the result of years of hard work that included re-learning the alphabet and being taught to read all over again. And now Graham, of Morningside, supports others affected by aphasia at a local Speakability group, where he hears devastating stories of people whose lives crumble as they lose their income and friends drift away unable to deal with their sudden 
inability to communicate.

Paul nods as Graham describes the impact of aphasia and challenges of having to learn basic communication skills all over again. For the former bank executive, even simple tasks like recalling his age and differentiating between right and left can be a struggle.

A law and economics graduate, he was 51 and working as a project manager for the Royal Bank of Scotland in 2007 when he entered hospital to await a triple heart bypass. The problems with his heart, however, led to a stroke.

He woke up acutely aware that something was very wrong. “I knew I could speak before,” he says, “but then all I was able to say were ‘yes’ and ‘no’. So I knew immediately that I had a big problem.”

As with Graham, intense speech therapy has helped. Now Paul, of Canonmills, can make himself understood, although sometimes painfully slowly as he searches hard for each word. For those listening, second guessing what he wants to say might be well-intentioned, but he stresses that every conversation, however challenging, aids his recovery.

“It’s important that people wait for me to explain and don’t jump in,” says Paul. “It’s annoying, and for me it’s about trying to improve. I can’t do it if someone is already talking for me.

“But before I had nothing at all,” he adds. “I am slowly getting there.”

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Quarter of a million affected

More than a quarter of a million people in the UK have problems speaking, reading and writing as a result of communication condition aphasia.

It is caused by injury to the language centres of the brain, either through stroke, head injury, brain tumour or a neurological condition such as meningitis or multiple sclerosis. Around a third of the 120,000 stroke survivors in Scotland have the condition.

A stroke occurs when the blood supply to the brain is cut off by a clot or a bleed in the brain. Around 12,500 people in Scotland have a stroke every year. It is the leading cause of adult impairment and disability.

Stroke is the country’s fourth biggest killer after cancer, heart and lung conditions. Risks include obesity, alcohol and smoking. High blood pressure and irregular heartbeat can also lead to stroke.