Being diagnosed with MND is like being given a life sentence.
These are the words of 33-year-old Neil Platt, who suffers with this cruel and surprisingly swift degenerative disease.
“First I noticed my right foot slapping the floor when I was walking … I thought I needed new shoes. Shortly afterwards, I was using a walking stick,” he said.
Neil is good looking. He’s a successful architect. He has a lovely and devoted wife and an adorable young son, Oscar. A novelist could scarcely create a more dramatically cruel scenario in which every single aspect of the protagonist’s circumstances screams out that they have every reason to live. But this isn’t a piece of fiction.
Video diary of Neil, lying in bed (paralysed from the neck down) bloated with illness is inter-cut with footage of the man he once was: active, athletic, optimistic; getting married or going swimming with his young son.
Motor neurone disease is a progressive disease that attacks the nerves in the brain and the spinal cord. It affects function, but it doesn’t affect feeling.
One particularly thought-provoking moment is when Neil says, “Count the number of times a day that you have an itch or a hair on your face or something like that, and then sit on your hands so that you can’t scratch it away.” He says that for him this is one of the worst things about the disease.
This film is made with an understated subtlety that is really admirable. It doesn’t milk the emotions of Neil or his family. But everyone who watches to the end will have a lump in their throat.
Neil made this film as a legacy and a special reminder of him for his son Oscar. Neil also wanted to help raise awareness of the disease for MND Global Awareness day on June 21.
Screenings of the documentary feature film can be arranged via the Motor Neurone Disease Association.