31 May 2009

Miracle of the paralysed patients freed from their silent prison

By Isla Whitcroft
At 23, Richard Gregory had a bright future. He'd just graduated from King's College in London and had won a coveted place at Sandhurst to start officer training.

Then, in November 2003, he was a passenger in a van that was almost completely crushed by a truck. He was pulled from the wreckage alive but had ruptured several organs and, as he arrived at hospital, suffered a major stroke.

'By the time we reached him, Richard was in a coma and doctors were unsure as to whether he would wake up,' remembers his mother Vivienne. 'It was six months before he was taken off a ventilator and started to breathe for himself.

Trapped: Richard Gregory was diagnosed with 'Locked-In Syndrome' after being paralysed in a traffic accident

'Although we never gave up hope, it was almost another year before we really believed he was still conscious and alive inside his paralysed body.

'The first sign was a sort of lopsided smile which doctors said was just an involuntary movement. Then we could see his right eye was moving, which they said was reflex.'
His parents Vivienne and Errol, along with other family and friends, began to ask him questions: to their delight, he responded by twitching his eyebrow. Encouraged by this, doctors sent Richard for tests.

'The results were conclusive - his brain was fully functioning,' says Vivienne. 'He was alert, aware of everything that had happened but unable to talk. The doctors called it Locked-In Syndrome. We called it an absolute tragedy.'

Locked-In Syndrome (LIS) can occur as the result of a stroke, a progressive neurological disorder such as Motor Neurone Disease or, as in Richard's case, a trauma in the brain stem which has irreparably damaged the nerves that control the head and body movement. The stroke he suffered may have also contributed to the damage.

As a result, the patient is paralysed but fully conscious, with normal brain function.
They can breathe unaided but are unable to speak, with their only method of communication through vertical eye movements. It is a dreadful fate, exacerbated by the inability of the patient to communicate their consciousness to the outside world.

There is plenty of anecdotal evidence of patients being written off by medics as being in a vegetative state or a coma; even of hearing doctors discussing switching off their life-support machine before someone notices that they are trying to communicate that they are very much alive.

'We could tell by the look in his eyes that Richard was trying to communicate with us,' says his godmother Dawn, who's been closely involved in his care. 'He just didn't have the means to do so.'

Mind-reading miracle: Richard is pictured here with Dr Paul Gnanayathum, who developed a device which interprets the brainwaves of paralysed patients, enabling them to communicate
After his accident, Richard spent the next three years in an NHS specialist head injuries unit until it became clear that his medical condition was not going to improve. Today, he lives in a dedicated care home in Birmingham.

His inability to communicate was extremely disheartening, says Dawn. 'Richard had always been chatty, with a big smile on his face, and we knew that he wanted to communicate with us.'
Computer program that 'reads' their minds

Then, last year, she read about a computer program which offered the family fresh hope. It effectively 'reads' the patient's mind to help them communicate. Using electrodes attached to the forehead, the program picks up electrical signals in the brain and from any muscles around the forehead which are not paralysed.

These electrical signals are then fed into a 'de-scrambler' which converts them into a command to move a cursor on a computer screen - for instance, to point at words such as yes or no.
The system was designed specifically for locked-in patients by Dr Paul Gnanayutham, a lecturer in computing at Portsmouth University.

This is not the first time scientists have found a way of using a person's brain waves to navigate a cursor, but Dr Gnanayutham is one of the first to use the technology on real people with serious brain injuries.
Furthermore, he has made a real breakthrough. One of the main barriers to the expansion of this technology had been that as well as the cursor-moving brain waves, there are lots of other brain waves creating background 'noise' which can confuse the computer.
It took him three years, but Dr Gnanayutham managed to write a sophisticated computer program which cuts out this 'noise'.

Since building the machine in 2001, he has worked with more than 30 patients.
'We use any signals we can to help patients to communicate,' he says. 'Some, like Richard, can frown a bit, which means his forehead muscles are not paralysed - so he can use those muscles to help along the cursor. He can also move his eyes.
'Some people can't move anything, and in that case we just work with brain waves.'
Dawn got in touch with Dr Gnanayutham, who went to see Richard last September.
Skateboarding computer game test
'He chatted to Richard and explained what he wanted him to do,' says Dawn. 'He put six pads on Richard's forehead, which were wired up to a box and a screen. We all waited with bated breath to see what would happen.'
Dr Gnanayutham had loaded up a computer game based on skateboarding. As the family watched, Richard concentrated hard and suddenly the skateboarder began moving - jumping obstacles and sliding up and down cliffs.
'It was an amazing moment,' says Dawn. 'We were nearly in tears. I remember sitting there watching with shivers running down my spine. At last Richard was able to break out of his prison, if only for a few minutes.
'I could tell Richard was really pleased. What the doctor didn't know was that Richard had been a really good snowboarder. He couldn't have picked a better game for him.'
Dr Gnanayutham, too, was astounded. 'I had never seen anything like it. To see someone playing a computer game using just brain waves, and playing it so well, was amazing.
'To do something like that takes a huge amount of effort and concentration, and people with head injuries tend to tire easily anyway. Richard is clearly a very clever man.'
Dr Gnanayutham first conceived the idea of the programme when singing in a choir which toured hospitals around London.
He says: 'We visited a neurological hospital in Putney and I saw people who were locked in. It seemed so unfair that they couldn't tell us if they were sad, happy, or wanted to go to bed late. I kept wondering if there was something I could do to help them to communicate.
'I knew the computer technology to use brain waves was out there, but my challenge was to adapt that so it was suitable for people with that condition.'

Cause? Richard suffered a major stroke as he arrived at hospital, which may have contributed to his brain damage
'What he has done is quite remarkable,' says Professor Gilbert Cockton, head of research into human and computer interaction at the University of Sunderland.
'He has solved a very complex problem and chosen to apply it to a worthwhile and moving cause.'
Indeed, Dr Gnanayutham could probably sell this programme to the computer gaming industry and make a fortune. Instead, as a committed Christian, he has chosen to devote what little spare time he has to visiting as many locked-in patients as possible and using the machine on them.
'Learning how to navigate using eye movement and brain waves isn't easy,' says Dr Gnanayutham. 'I worked for eight months with one young man whose mother knew he was "there" - but nothing happened until he started using the brain wave system. Finally, he could "talk" to her again.'
Dr Gnanayutham doesn't-always bring good news: there are times when people's loved ones are no longer conscious, and he cannot work with patients who are heavily sedated.
Wherever possible, he tries to have a medical doctor witnessing his work. 'I can't just walk into a hospital and start treating patients,' he says. 'While most care homes are sympathetic, hospitals are less so. My dream is to use my system within the NHS, so this is something I need to address.
Dr Gnanayutham has two machines, each containing a laptop, screen and head pads.
'I would like to create one single unit with all the component parts in it which could be operated by a carer, as there are so many dozens of people who want to see me and I can't be everywhere.
'Sadly, I'm not a businessman and have no idea about raising funds.'
Richard's mother says: 'We are just so grateful to Dr Gnanayutham. It's like a miracle. The next step is for us to purchase a machine just for Richard, so he can communicate all the time.'
• For more information, or if you would like to make a donation to help Dr Gnanayutham's work, email Paul.Gnanayutham@port.ac.uk

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