- Consultant said he’d be a prisoner in his own body for life
- ‘You have to quickly work out how to breathe,’ he says
- Now he can walk and has even taken up motor racing
Diagnosed with ‘ locked-in syndrome’ and paralysed from head to toe, stroke victim Graham Miles was told he would never recover.
Doctors said he would be a prisoner in his own body for the rest of his life. He was able to communicate only by moving his eyelids.
Just a few months later, however, Mr Miles left the medics ‘utterly bewildered’ by taking his first faltering steps.
Road to recovery: Stroke victim Graham Miles managed to bring himself out of ‘locked-in’ syndrome. He was paralysed in 1993 following a stroke, but his recovery has left doctors astonished
Yesterday the 66-year-old grandfather told how he had made such a remarkable recovery that he is now able to live independently and has even taken up motor racing as a hobby.
‘There is no medical explanation for what I’ve achieved,’ he said. ‘As far as I know, no one with locked-in syndrome has taken their motor function as far as I have.
‘Most die within a few months, and the rest only regain a very small amount of movement.’
‘Those first few weeks were very strange. I didn’t feel any panic or despair…I remember being puzzled that I felt so calm about the situation.’
Mr Miles was 49 when he suffered a brain stem stroke as he drove home from his job as a gas engineering manager in 1993.
The father of two was taken to hospital and slipped into a coma. When he awoke two days later he was completely paralysed.
‘The only thing I could move was my eyelids. Those first few weeks were very strange.
‘I didn’t feel any panic or despair, which the doctors said was because the brain produces a mild sensation of euphoria to stop people going into shock. I remember being puzzled that I felt so calm.
‘The doctors said there was a massive blood clot at the base of my brain and all the nerve endings had died.
‘The junction between my brain and the rest of my body was completely destroyed and the neurologist said I’d never recover.’
Mr Miles said that despite the grim prognosis, he was determined to prove the doctors wrong.
Enjoying life as much as he can: Mr Miles has taken up motor racing as a hobby which he enjoys with his son Richard. He now has a racing license and has competed in his E-Type Jaguar, described as his pride and joy
‘Initially I had a job to do and that was to breathe because, although the involuntary muscles such as the
heart and the lungs still work, the chest is paralysed so there’s a resistance to breathing,’ he said.
‘You quickly work out that you have to concentrate on the diaphragm to get effective breathing.
‘After two months I started getting a little movement in my face and my voice came back a bit. It was very frail and I could only manage one word at a time, I couldn’t put sentences together.
‘I closed my eyes and willed it to move. One day, after about three or four months, it flickered. Once I had made that initial breakthrough I started working on different parts of my body. Toes first, then fingers.‘
‘Then I started working on trying to move my body. I concentrated on my big toe to start with.
‘I closed my eyes and willed it to move.
‘One day, after about three or four months, it flickered. Once I had
made that initial breakthrough I started working on different parts of my body. Toes first, then fingers.
‘My consultant was utterly bewildered. He said I should have been dead.’
Gradually, the feeling returned to his legs and arms and with the help of a physiotherapist he made his first steps with a walking frame about six months after his stroke.
He was moved into a residential rehabilitation unit where he continued to improve over the next six months.
Mr Miles believes he overcame his devastating condition by tapping into the ‘extra capacity’ of the brain. He said: ‘There is a lot we don’t know about the brain and I believe that I somehow found an alternative path between my brain and the rest of my body.
Steady progress: Mr Miles regularly takes workouts alongside his therapist at his local gym and can climb the steps outside his home in Brighton
‘If you are totally focused, you’ve got sufficient drive, commitment and mental stamina, you can break down that barrier between the brain and the body that goes with total paralysis.’
Mr Miles was living in Sanderstead, Surrey, with his wife Brenda and children Claire and Richard at the time of his stroke.
He believes the stress of working long hours and smoking may have caused his stroke. He said: ‘I was working 70 or 80 hours a week and had a lot of responsibility.’
Mr Miles split up from his wife 18 months after his stroke and now lives in Brighton.
‘After two months I started getting a bit of movement back in my face and my voice came back a bit. It was very frail and I could only manage one word at a time, I couldn’t put sentences together.’
He needs two walking sticks to get around, but he lives independently, drives a manual car and gets up and down the steps to his base-ment flat. Over the past three years he has been working in the gym with a therapist and has made further improvement.
He has even taken up motor racing as a hobby which he enjoys with his son Richard, 35, a chartered surveyor who lives with his wife and two children in nearby Haywards Heath.
He said: ‘Richard and I are keen motor sports fans. I’ve got a racing licence and I’ve been in a few races with my E-Type Jaguar - my pride and joy.
‘I’ll never make a full recovery but I’m working hard to improve as much as I can. Occasionally I get down in the dumps but I always say to myself, pull yourself together, just get on with it.’
The nightmare of locked-in syndrome was poignantly detailed in 1997 by French journalist Jean-Dominique Bauby.
Bleaker times: Mr Miles in his hospital bed during December 2003. He was never expected to recover from his stroke, but believes his sufficient drive, commitment and mental stamina pulled him through
He dictated his memoir The Diving Bell and the Butterfly by blinking his left eye as a transcriber recited the alphabet.
The book was later made into a film.
Earlier this year Cambridge University scientists were able to establish a connection with a man diagnosed as being in a vegetative state after a road accident in 2003.
Survival in the blink of an eye
LOCKED-IN syndrome can be caused by a traumatic brain injury, a brain stem stroke or medication overdose.
Sufferers are completely paralysed but remain conscious and are able to think and reason as normal.
They can usually move their eyes and can sometimes communicate by blinking.
There is only limited treatment available including using electrodes to stimulate muscle reflexes which can sometimes bring some minimal feeling back.
But research over the last 20 years has revealed the brain’s capacity to regenerate in a way tha t was once thought impossible.
During that time doctors have created a medical vocabulary that attempts to describe what is happening to patients who appear to have no prospect of recovering from a traumatic brain injury.
The terms include locked-in syndrome and PVS (persistent vegetative state).
PVS is diagnosed in patients in a coma for at least three years without being able to communicate or have any understanding of what is being said.
There are normally fewer than 100 patients in the UK with PVS at any time.
Locked-in syndrome is an even rarer diagnosis applied to people who are conscious, can see and hear but are paralysed and unable to speak because of damage to the brain stem. They can often move their eyes.
Recent developments suggest the brain continues to function and make new nerve connections that may eventually lead to physical and mental improvements.
This re-routing of neural activity takes time but laboratory experiments suggest it is a ceaseless activity that will have differing results in individual patients.
At the same time, doctors have increasingly recognised that patients who once would have been ‘written off’ may have the capacity to communicate, if not achieve even more.
It is hoped computer devices might help these extreme cases to communicate in future, but the latest case of triumph over physical adversity shows what a functioning mind and strong will to survive can achieve.
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