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 Neil Platt endured as he lived with, and died from, motor neurone disease (MND).
The English architect was only 33 when he was diagnosed with 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, around a year after his diagnosis, and half of sufferers die within 14 months. But physicist Stephen Hawking was diagnosed with the illness at the 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 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.
To mark Motor Neurone Disease Global Awareness Day, a screening of the film, I Am Breathing, is being held this evening at 6pm in the Light House Cinema, Dublin.
It is hoped that showing the horror of living with the illness will make more people aware of MND, and help raise funds for research to find a cure.
Neil’s father and grandfather died of the disease, and he was aware that his own son has a 50/50 chance of developing the disease himself.
Davie explains: “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.”
More than 310 Irish people are currently living with the disease for which there is no cure, and the cause 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.
“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,” says Davie.
* See www.imnda.ie