He thought he'd avoided the disease that killed his father. But then Neil's joy at his son's birth turned to painful anguish

By Lesley Gibson
Last updated at 10:31 PM on 29th December 2008

Fighting for his future: Neil with his young son Oscar


This time last year, Neil Platt should have been at home with his wife Louise, celebrating his four-month-old baby’s first Christmas.


Instead, he sat in a consulting room at a nearby London hospital, filled with dread. Two months before, he’d lost the ability to lift his right foot properly. Although a raft of tests had come back clear, he knew something was wrong.


Even before the doctor spoke, Neil suspected his worst fears were about to be confirmed. He was right. ‘I’m really sorry,’ said the consultant sincerely, ‘but given your family history, I think it’s highly likely you have motor neurone disease.’

This was the disease that had killed Neil’s grandfather at 64, and his father at 51. The terminal illness kills the motor neurones - the nerve cells that send messages to the muscles so the body can move.


The patient effectively becomes paralysed - unable to move, talk, swallow or breathe, but still able to see, hear and feel.


And in Neil’s case, the progression of the illness has been devastating in its speed and extent. Only 34, he had built up a successful career as an architect and was looking forward to family life. This year should have been his happiest yet.


Instead, he has had to endure the torture of losing the use of almost every muscle, and cannot even cuddle his son. Now, only a year since the first symptoms, a ventilator is keeping him alive. He can only talk and swallow.


He has already decided that when he loses those abilities - likely to happen in only weeks - his ventilator will be removed so he can die.





He says: ‘Every new disability brings a terrible sense of disappointment. When Oscar played in the snow for the first time recently, I’d have given anything to help him build a snowman. Instead, all I could do was watch. It was heartbreaking.


'But just the other day, he climbed up my chest, gently removed my ventilator mask and kissed me, then replaced the mask so I could breathe. Moments like that make life still worth living.’


There are 5,000 people living with motor neurone disease in the UK at any one time, but it’s unusual for it to strike in under-40s; most people diagnosed are between 50 and 70.


In most cases there is no obvious cause - around ten per cent of cases are genetic. Life expectancy is usually six months to five years and the only licensed treatment is the drug riluzole, which can slow the progression of the disease, but only for up to six months.


‘When I was diagnosed I thought of Louise and Oscar and felt the most crushing disappointment; I would never be able to be all I had wanted to be for them.


Devastating news


Louise, the news was devastating. ‘Neil phoned me from the hospital and I started crying,’ she says. ‘I’d hoped his suspicions were wrong because of his age. I was angry: we’d just had a baby, how could fate be so cruel?’


The neurologist couldn’t say how long Neil might have to live - hopefully more than six months. Bravely, Neil and Louise went ahead with their plans for Christmas.


‘My mother was incredibly strong when I told her,’ he says. ‘But she was horrified the illness had struck again.’


Because of his family history, at 24, Neil had been to a genetic research clinic in London. A specialist said his chance of getting the illness was 50-50. ‘I could spend the rest of my life worrying for no reason, so I decided just to get on with it.’


He and Louise met and became friends at Edinburgh, where both were students, but lost touch until they attended a mutual friend’s party in London when they were 29. By then, both were working in London - he as an architect, she as a costume designer for film and TV.


Within three months of being reunited, the couple were engaged. They married in November 2004. They were keen to start a family - partly because of the risk Neil could develop motor neurone disease later in life. Louise knew about the threat of the disease before they wed.


‘When we were planning a family, it didn’t occur to me the illness might strike me 20 years earlier than my father,’ he says. ‘I expected to be around while my child was growing up.


‘Although there was a risk a child could contract it too, I’m still glad we had Oscar, although I’m terrified about his fate.’ Neurologists cannot say if he will contract the illness, despite the strong family link.


Dawning realisation


However Neil’s experience of his father’s illness made him all too aware of the symptoms. In November last year, when Oscar was two months old, Neil noticed that he was unable to lift his right foot properly.


Terrified he had motor neurone disease, he was referred to a specialist straight away through his employer’s private health insurance. He initially saw a physiotherapist, then the neurologist who eventually broke the shattering news.


Over the next few months, the illness took over Neil’s body with horrifying speed. He lost the use of his hands and legs. The couple were forced to let out their house in south London and rent a bungalow in North Yorkshire, to be closer to Neil’s family, who could care for him.


By the middle of May, Neil had to stop feeding Oscar because his hands were shaking uncontrollably from the strain on muscles which were not receiving the correct signals. ‘I was meant to be in the prime of life and wanted to look after my family, but Louise had to look after me,’ he says.


By Oscar’s first birthday, Neil had lost the use of his upper body and needed a ventilator to push air into his lungs because their capacity was only 30 per cent. He also had to give up work because the ventilator meant his voice recognition software - provided by his employers so he could still do the job he loved - didn’t work properly.


Louise, of course, has had to look after not only a young baby, but watch her husband’s deterioration. Unable to work, the couple are relying on income protection policies and state benefits.


She says: ‘As Oscar has become more and more independent, Neil has become less so. Life seems to work in cruel way: the week Oscar picked up his spoon to feed himself, I had to start feeding Neil because he could no longer lift a fork.’


Worst things for Louise


But one of the worst things for Louise has been watching her husband in pain. ‘Few people associate pain with motor neurone disease,’ she says. ‘But people with this illness can still feel everything, even though their muscles are paralysed.’


Because they cannot move, the pressure of their own bodies becomes unbearable - even a crease in clothing, or being in one position too long, can cause pain. They cannot scratch itches, and the fact the nerves don’t work properly mean they can experience painful sensations such as burning.’


For months, Louise managed to look after both her husband and Oscar with little help.

Now living nearer Neil’s family in North Yorkshire, the responsibility is shared with them and district nurses. ‘I feel totally exhausted now, emotionally more than physically, by the whole situation,’ she says.


Neil can now only speak and swallow. Incredibly, the couple have managed to keep their sense of humour, and still joke and tease each other constantly. Louise explains: ‘We want to make the most of what little time we have left together. If we spent that time angry and upset, we’d be wasting it.’


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'Life seems to work in cruel way: the week Oscar picked up his spoon to feed himself, I had to start feeding Neil because he could no longer lift a fork'

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Every night, Louise helps Oscar to sit on his daddy’s lap and wraps Neil’s arms around him - it’s the nearest Neil can get to giving his son a cuddle. ‘I take off my mask for a few seconds and he gives me a huge smile,’ says Neil. ‘It’s wonderful.’

Neil has put together a memory box for his son. There’s a letter in which Neil shares stories and anecdotes about his life, telling Oscar which loved ones to go to for more information about them.


There’s a watch engraved with Oscar’s name that Neil’s mother gave him when Oscar was born, toys he played with as a child, and a leather jacket.


Neil has cried many times about the fact he won’t be able to teach Oscar to kick a ball or ride a bike, or see him marry. He and Louise have discussed what advice Neil would give his son in the future.


Neil says he does not worry about how Louise will cope without him. ‘I know she is a wonderful woman and can cope with anything. I also want her to marry again, and for Oscar to have a sibling.’


Earlier this month, a controversial TV documentary showed the death by assisted suicide of fellow motor neurone disease patient Craig Ewert. He travelled to a Dignitas clinic in Zurich where he was given drugs to end his life, a procedure that is illegal in the UK.


Although Neil had never considered this option himself, he understands why someone would take such a decision. ‘It’s a matter for individual choice,’ he says.


Although Neil somehow manages to be cheerful, he admits he is angry inside. ‘However I’m trying to channel that anger into raising awareness of this terrible disease. We need money for more research so a cure can be found. Then there will be no need for patients facing this to have to even consider assisted suicide.’


• To give money for research, visit Neil’s blog, www.plattitude.co.uk, www.mndassociation.org or call 08457 626 262.

http://www.dailymail.co.uk/health/ar...l-anguish.html