Devoted Dad with ALS Creates Inspiring Documentary for His Son: ‘He Is Always in My Thoughts and in My Heart’
June 19, 2016 - als
Patrick O’Brien has a present for his 8-year-old son, Sean, this Father’s Day – one that took him 10 years to create.
In 2005, when doctors told a renouned New York City DJ that he would live for usually two-to-five years after he was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also famous as Lou Gehrig’s disease, O’Brien, afterwards 31, motionless to make a film documenting his journey, dynamic to make his remaining years count.
A decade later, his film, Transfatty Lives (named after his donut-loving nickname), debuted on Netflix on Jun 15 after winning a assembly endowment during a 2015 Tribeca Film Festival.
And some-more importantly, O’Brien, now 41, has defied his doctors’ contingency and now hopes to watch his son grow up, regulating his eyes to promulgate now that he has mislaid a use of his limbs and his voice.
“Luckily, being a father is something we have for a rest of my life,” O’Brien, who lives during an assisted vital core in Chelsea, Mass., tells PEOPLE, regulating a Tobii Dynavox debate generating device to twin his thoughts by his eye movements. “I done this film for my son. And we also see it as my avocation to continue to demonstrate myself for those with ALS who never schooled to do so in a initial place.”
It was autumn 2004 when O’Brien, afterwards operative as a DJ, filmmaker and visible artist, grown an wild jolt in his legs, “like a skip on a unwashed CD,” he tells PEOPLE.
Although doctors suspected that he had ALS, neurological contrast didn’t exhibit many during first. O’Brien took his video camera with him to his appointments and eventually held a impulse when he was told that he really had Lou Gehrig’s illness and would expected die in a few years.
Courtesy Patrick O’Brien
“I always try to find a splendid side,” says O’Brien, “even with a depot diagnosis. we knew it was a commencement of a new tour for me. It wasn’t a doubt of either it was probable to make a film documenting my tour – it was unfit not to. The usually approach we could have given adult on a plan is if we had given adult on myself, that isn’t something that’s in me.”
With support from family members and friends, O’Brien chronicled all from losing his ability to travel to a day he had a tracheotomy and perceived a ventilator in sequence to breathe. Along a way, he also filmed himself fighting depression, descending in adore and carrying a son (the attribute with his partner has given finished and she and Sean now live in Florida), and his onslaught to promulgate as he mislaid his voice.
After perplexing a accumulation of communication inclination that were delayed with countless glitches, O’Brien schooled about a device that would concede him to use his eyes to lane a keyboard on his mechanism screen.
Courtesy Patrick O’Brien
“It non-stop adult my world,” he says. “This is how we finished a film. we would form records about any shave and stage and my editors would make a changes. Now we can also roller a Internet, online shop, write memoirs for my son and make bad jokes on Facebook.”
Without a eye-activated technology, it would take him many longer to accomplish even a simplest tasks, such as promulgation emails or profitable bills online, he says.
“Communication is one of a many critical tools of living,” says O’Brien, “and this has non-stop adult my universe with a palliate of access.”
Courtesy Patrick O’Brien
“People like Patrick are an impulse – display that everyone, regardless of their written or earthy abilities, should be means to find their ‘voice’ in this world,” Tara Rudnicki, boss of Tobii Dynavox, North America, tells PEOPLE.
“For those with ALS, (speech generating) record empowers them with a ability to communicate, rivet with a universe around them and do things that everybody – maybe even themselves – suspicion would no longer be possible,” she says.
With his documentary receiving regard from a open and critics, O’Brien is now deliberation ideas for his subsequent project, and friends have set adult a substructure – Friends of Patrick O’Brien – to assistance support him and his son.
“He (Sean) is always in my thoughts and in my heart,” O’Brien tells PEOPLE. “I see him when we can. we done a film so that he would have a approach of training about me – unfiltered and as we wish him to know me. we might not be means to play Xbox with him or build a tree installation for him, though during slightest we can give him light in a dark of a film theater.”
“What we wish people will take divided from my film is that a tellurian suggestion is gigantic and life is to be cherished,” he adds. “Everyone is pang in some approach and everybody has their day-to-day struggles. Wake adult – each impulse is a miracle. Be merciful and suffer a ride.”