“I Am Breathing”: A Man’s Battle Against Motor Neurone Disease

Neil Platt with Oscar. Photo credit: thesun.co.uk

I Am Breathing (2013) is an intimate documentary on architect Neil Platt’s final year of living with motor neurone disease (MND). Platt’s friend and director Morag McKinnon started the project in 2008 with the hopes of chronicling Platt’s experience of living with the highly degenerative and “merciless” disease, which, “rapidly causes physical deterioration of the body, leaving sufferers unable to walk, swallow and eventually even breathe on their own.”

Platt’s story begins in 2007, on the day he came home from work with a slight limp in his step and a pain in his foot. To Platt’s mother, it was a haunting indication of MND, the disease that took the life of Platt’s father at the age of 62.

The untimely death of his father deeply troubled Platt, who wondered if he would die just as prematurely from the disease. So in his twenties Platt put himself through six months of testing and research to reveal the fate of his genetics. At first, the tests came up negative—the future looked MND free.

But Platt’s foot pain never lessened. His ability to complete everyday tasks became harder and harder as his motor skills failed him, until February 2008, when doctors “who had eliminated every other option” diagnosed him with [a] disease that typically allows people two years to live.”

“To Platt’s mother, it was a haunting indication of MND, the disease that took the life of Platt’s father at the age of 62.”

It was an enormous blow to Neil and his wife Louise, who had just become new parents with the birth of their baby boy, Oscar. “There was a big jump in 2008,” Louise says, “between Neil’s birthday in July and Oscar’s birthday in August…On Neil’s birthday I have photos of him wearing fingerless gloves, meaning he could push his own wheelchair, and by Oscar’s birthday he couldn’t lift his arms, needed a head rest and had lost a lot of weight. He was gulping like a fish.’”

Neil’s wife Louise. Photo credit: iambreathingfilm.com

As Platt’s MND intensified, so did the emotional and mental strain the disease had on the entire family—but Louise and her husband refused to live the rest of their time together in a state of frustration. Platt passed away on February 5th, 2009 and even though it pains Louise to know her husband didn’t feel ready to go, she acknowledges that, “Life must go on” and has transformed her perspective on Platt’s extended dying process:

“I switched my thinking from self-pity to thinking [about] how privileged I was to be going through this so closely with Neil,” she says, “on [another] part of his journey through life.”

Read The Telegraph’s complete article on the film here

Watch the trailer below: