‘Dementia link to sudden low blood pressure and dizziness’
October 13, 2024
A heart-rending film about a young father’s battle with motor neurone disease and the letter he struggled to write to his two-year-old son in his last months is to be released later this month.
‘I Am Breathing’ documents the last months of former architect Neil Platt’s life. Viewers are given an insight into how the disease ravaged his body but the docufilm also celebrates the 34-year-old’s indomitable spirit.
Neil documented his rapid and steady decline to raise awareness of the neurological disease so a cure could be found as soon as possible – and hopefully before his son, who is also at risk of developing the deadly condition, grows up.
Neil was diagnosed with MND in February 2008. Months before, he had noticed that his foot was slapping against the ground when he walked. He grew increasingly concerned that he was developing the same condition that had killed his father when he was 51, and his grandfather at 64.
Neil underwent a raft of tests and all the results came back clear, but Neil knew that his symptoms were not normal.
Eventually he was referred to a neurologist who, taking his family history into account, broke the shattering news to the new father. It is not possible to test for MND specifically – it is only diagnosed after a process of elimination.
Over the following few months, the illness took over Neil’s body with unrelenting speed.
He quickly lost the use of his hands and legs and the couple were forced to move from south London to North Yorkshire to be close to Neil’s family who could help care for him.
By Oscar’s first birthday, Neil had lost the use of his entire upper body and required a ventilator to push air into his lungs because their capacity had plummeted to just 30 per cent.
He was also forced to give up work because not only had his hands stopped working but the ventilator meant his voice recognition software – provided by his employers so he could still do the job he loved – did not work.
His wife Louise said that one of the cruellest reminders of her situation was that as Oscar became more independent, Neil became less so.
She said at the time: ‘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.’
I Am Breathing follows Neil’s final months, unable to move without the help of family, friends and a specially-installed winch.
While he still has the ability to speak he reflects on his tragic situation and, with the help of his wife, puts together a letter and memory box for his son Oscar.
Neil remains cheerful and is incredibly witty throughout the film, but he admits he is angry inside.
‘I’m trying to channel [my] 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,’ he said.
Viewers learn that Neil has made plans to have his ventilator removed when he cannot speak or swallow for himself. He said he could not understand how he would be of any benefit to his wife or son if he were unable to move or express himself.
The 11-page letter he struggles to write using new voice-recognition software – his lips are steadily losing the ability to form words – shares stories and anecdotes about his life, such as a section explaining how he and his mother fell in love.
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 and were keen to start a family – partly because of the risk Neil could develop MND later in life. Louise knew about the high likelihood of the disease affecting Neil before they wed.
Inside the large wooden memory box there is a watch engraved with Oscar’s name that Neil’s mother gave him when Oscar was born, his favourite hat, a Zippo lighter, toys he played with as a child, and his favourite leather jacket.
Neil tries to anticipate what Oscar might want to know about his father in a future and tells the story of his life from his memories and impressions of love, friends and motorbike rides.
In the film Neil is still keen to be a father to Oscar, despite his profound disability. Oscar sits on his father’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.’
MND is a terminal illness that kills the body’s motor neurones – the nerve cells that send messages to the muscles so the body can move.
A patient’s mental capacity and senses remain entirely undamaged however and, explains Neil, this can be one of the the hardest aspects of the disease to deal with.
In the film he says that a simple itch can be incredibly infuriating and agonising because you don’t have the power relieve the discomfort.
There are 5,000 people living with MND in the UK at any one time, but it’s unusual for it to strike people under 40. Most people diagnosed are between 50 and 70.
The patient eventually becomes entirely paralysed – unable to move, talk, swallow or breathe, but still able to see, hear and feel.
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.
Shortly after his diagnosis he said in an interview: ‘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.’
Neurologists cannot confirm if Oscar will develop the illness, despite the strong family link.
The film ends with Neil’s death. Although his death is not captured on film, viewers watch his final days and one of the moments that he realises that ‘time is being called at the pub’, as he puts it.
‘I Am Breathing’ will be screened internationally on June 21, MND Global Awareness Day, which will launch the UK cinema release. Half of the screening funds will go to MND Association and 50% will go into development.
Source Mail Online