When British engineer Graham Miles suffered a stroke, he lapsed into unconsciousness.
When he awoke, he found he could feel, hear and smell but could not talk and the only part of his body he could move were his eyelids. He had locked-in syndrome.
Here he tells the story of his recovery.
“I was driving home from work one evening when it happened. I was 49 and had never suffered a significant illness.
But I had been working far too hard as an engineering manager, taking on extra jobs and putting in long hours. This particular day, I’d left a little earlier than usual because I felt woozy, with a strange buzzing sensation in my head.
By the time I got home, I couldn’t move. My wife called an ambulance and I went straight to hospital, where I blacked out. When I came round, I couldn’t talk, though I could feel, hear and smell.
During the two days I’d been unconscious, I’d become almost completely paralysed — the only part of my body I could move was my eyelids.
“My immediate problem was simply breathing; the paralysis in my chest meant I had to concentrate on my diaphragm to draw breath. I’d had a stroke but, more unusually, thanks to a blood clot at the base of my brain, I’d also developed a rare neurological disorder called locked-in syndrome, a condition in which I was a prisoner in my own body.
The prognosis was either death or living death.
“Faced with this, I felt strangely calm. I’ve since learned that people suffering from locked-in syndrome often experience a mild euphoria at first – the brain’s way of preventing panic. It’s certainly true I set about the problems facing me without question or surprise. I was determined to overcome my difficulties.
“During the first few days I found even thinking exhausting. It would have been so easy just to give up and slip away. Instead, I focused on immediate problems: swallowing, trying to move my head, to find my voice.
“I began to communicate with my wife, son and daughter by blinking: one blink for yes and two for no.
“Fed on baby food via a tube in my stomach, I worked on trying to speak. When my voice did start to return, the first sound I was able to make was crying. It was as if I’d lost control of my emotions, with my muscles.
“I was later told that until I started to recover, I was simply expected to die, and nurses were told not to prioritise me.
To some extent, such negativity only fuelled my determination to recover.
Told I would never regain movement below my neck, I spent days concentrating on my big toe, willing it to move. Finally, after months of concentration, it flickered.
“By now feeling was returning to my face and I was able to speak again, one word at a time. Now people really started to take notice.
My doctor was bewildered. As far as he was concerned, I should have been dead. Few locked-in syndrome patients make it past the first few months and, of those who do survive, fewer regain any motor control.
“Gradually, feeling returned to my other toes, my fingers and my legs. Six months after my stroke I was walking with a Zimmer frame and after a year I was fit enough to look after myself.
“Sixteen years after my stroke, I still walk with sticks most of the time and need regular physiotherapy. But to the best of my knowledge, I’ve made the most complete recovery of any locked-in syndrome sufferer and I think the condition is better understood as a result.
“At the time of my stroke, the possibility of the brain developing new nerve connections simply wasn’t recognised.” —