IMAGINE having an itch and not being able to scratch it.

Then think about lying completely still watching your one-year-old son play with your friends because you can’t move a muscle to play with him yourself.

Such experiences are just a tiny fraction of the torture young father Neil Platt endured as he lived with, and died from, motor neurone disease (MND), writes Lisa Salmon.

The architect was only 33 when he was told he had the progressive neurodegenerative disease, which stops motor neurones (nerves) in the brain and spinal cord from passing messages to the muscles, telling them to move. This causes increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing, which eventually lead to death.

The disease progresses at different rates in each individual.

Neil died at the age of 34 in 2009, about a year after his diagnosis, and half of sufferers die within 14 months. But the physicist Professor Stephen Hawking had the illness diagnosed at the young age of 21, and is still alive now at the age of 71. His case is, however, very unusual, say MND experts.

Despite having a rapidly progressing form of the disease, Neil used his last months to show the world the reality of MND by taking part in a poignant documentary about his struggle.

The film shows both the hardship – and the humour – of life with MND, with scenes including Neil breathing through a noisy ventilator and wistfully looking through a nearby window as his friend plays with his young son Oscar outside.

“It was heartbreaking for him to see other people playing with his son when he couldn’t even hug him,” says Emma Davie, co-director of the film. But other scenes show Neil retained his sense of humour right to the end.

AWARENESS RAISING

A global screening of the film, I Am Breathing, will be held on Motor Neurone Disease Global Awareness Day on June 21, when it is released in cinemas.

It’s hoped that showing the real-life horror of living with the illness will make more people aware of MND, and help raise funds for research to find a cure.

Despite such research being too late to save Neil, it was a hugely motivating factor both for him to take part in the documentary, and to write the blog on which the film is based.

Both his father and grandfather died of the disease, and Neil was aware that his own son, who was just a few months old when doctors told him he had MND, has a 50/50 chance of developing the disease himself.

Davie said: “Neil wanted a film to be made. He was so scared his son would get MND, and he wanted more people to hear about it and for there to be more research.”

Neil, his family and the Motor Neurone Disease Association, which is supporting the film, believe not nearly enough money is spent on research into the disease, which is diagnosed in about 1,000 people every year in the UK. About 5,000 UK people have the disease at any one time, But while more than £300 million is spent annually on cancer research in this country, the average annual spending on MND research is just £2 million.

There’s no cure, and the cause of the disease is still unknown.

While there’s a genetic link in some cases, like Neil’s, there isn’t one single gene or even one group of genes that cause MND.

Neil, who was originally from Harrogate but lived in London with his wife Louise and baby Oscar, noticed the first symptoms of MND when his foot began ‘slapping’ on the floor as he walked, in late 2007.

By a process of elimination, as there is no diagnostic test for MND, he was diagnosed the following year. He quickly lost the use of his legs, and by that autumn was also unable to use his arms.

While he put a brave face on being paralysed from the neck down, he sometimes found it hard to cope, particularly because he felt ineffective as a father, says Davie.

“He couldn’t do all the things he’d wanted to do – he said his dream was to push a pushchair with his son in it,” she said.

NEARING THE END

As the film shows, Neil managed to speak clearly until very near the end of his life.

“He did suffer – it was a huge struggle for him,” said Davie.

“But he was a great spokesman for the disease. Towards the end, one of the few things he had left was that he could talk, and he was determined to use that ability to get the word out about MND.”

Neil made an advance directive – a living will – stating that when he lost the ability to communicate and swallow, he wanted his ventilator switched off at a hospice.

His cousin filmed him as he lay in bed struggling to tell Louise, as she wiped away her tears, that he’d made the brave decision that the time had come, and that the past year had been “devastating and degrading”.

In his blog, he confessed: “The thought that the end is nearing fills me with dread.”

Davie says the documentary team didn’t feel it was appropriate to be present at that final stage. She said: “Seeing how he dealt with intense suffering was inspirational, as well as sobering.

“When people see the film, it makes them more aware of how grateful they should be for their own lives. That was Neil’s gift.”

Neil’s brother Matt, who helped Louise look after him, says: “Neil lived with the disease because of Oscar. He wanted to see his son become a little person.

“Me? I wouldn’t want to hang around.I could not watch my arms and feet stop working,I couldn’t put my mum and partner through it.”

FUNDING RESEARCH

Half the profits from I Am Breathing will go towards MND outreach work, and the other half will go to the MND Association.

Sally Light, chief executive of the MND Association, says initial symptoms vary from person to person and may, like Neil’s, be in the feet, hands, or through problems with eating and swallowing.

“The disease doesn’t always manifest itself in the same way,” she said.

The MND Association’s mission is a world free of the disease and, while there have been recent genetic breakthroughs in research, the exact cause is still unknown.

People are do not usually have the illness diagnosed until they’ve had it for some time, and research is being done to look for markers in spinal fluid that could help detect and treat MND much earlier.

The majority of people with MND retain their cognitive ability, and this, says Light, is one of the most distressing things about it.

“People are left with a failing body, but are still utterly aware of what’s going on.

“Neil saw his body deteriorate in front of his eyes.

“He was clearly a very courageous guy and was determined to leave the legacy of the film for his son, so he would know something of his daddy.”

Perhaps the final word should go to Neil himself, who wrote in his blog: “My re-acquaintance with the when of things has confirmed how right I was to value my time.

“You could all do me a favour – don’t let yours slip by unnoticed.”

* To set up a screening of I Am Breathing and help raise money and awareness for motor neurone disease (MND), visit iambreathing.com and for more information about MND, visit mndassociation.org.