In the span of just one year, Neil Platt, a healthy 30-something, became paralyzed from the neck down, due to ALS, or as it's commonly known, Lou Gehrig's Disease. He began to film his final months for his young son Oscar, which is now the documentary "I Am Breathing." His widow Louise Oswald and the documentary's co-director Emma Davie joined HuffPost Live to share Platt's story.
Symptoms of ALS, or Amyotrophic Lateral Sclerosis, can strike suddenly and the disease can spread quickly. "For Neil it just started as a little thing in his foot," Oswald explained to host Dena Takruri. "He just went out one day and came back and said that he was aware he had a little limp, but he didn't feel any pain with that limp and we thought perhaps he needed a new pair of shoes. I got him a new pair of shoes and the next time he went out, came back same thing."
"It went from one toe not being able to lift to creeping up his body and by the time he died, he couldn't even hold his own head up. He could only move his eyes and his lower jaw. It was very sad--very quick and very sad."
After Platt could no longer work, he began to raise awareness for ALS through this documentary. The cameras became a welcome fixture in the Platts' lives. "It was actually really good to have the cameras there, because Neil was able to do all that talking," Oswald said. "He could get everything he wanted to say out there and he knew that there would be answers long after he'd gone."
She added, "Day to day, I was so busy and I was so exhausted, they actually gave me a little bit of a break to have the camera there and have Neil answering questions for a wee while, and I could spend some time with Oscar actually. It was quite nice."
Their son, Oscar, was just 18 months old when Platt died. Keeping his memory alive has been a goal for Louise and her new husband. "We do keep Neil present in his life," she explained. "He knows that there is a film about his daddy, but he's never asked to see it or anything like that yet. At some point he will ask to see it, I'm sure, but way in the future. But I don't ever want to hide the fact from him that there's a film about him. He can come to me and get answers whenever he wants. But I do like to let him know that he can take whatever he wants whenever he wants it."
Oswald added that she appreciated that "I Am Breathing" managed to capture Platt's spirit.
"He was just a really confident, lively person, wasn't he? Very sociable person. He was always the person to try and organize the party, bring people together. And that's what I love about this film now as well, is that he's still doing that."
"I Am Breathing" had a Global Day screening in June, and will screen in New York and LA in September.