An Iroquois County man is getting worldwide recognition as a film about his life is creating more awareness for MSA.
Multiple System Atrophy is a rare degenerative neurological disorder which affects the involuntary functions of the body. There is no cure, said Austin Crawford.
“It shares a lot of the same affects as Parkinson’s,” he said. And he was at first diagnosed with Parkinson’s eight years ago when he first started noticing symptoms. Parkinson’s medicines didn’t work, and further brain testing was done, which led to the MSA diagnosis, he said. With the MSA diagnosis one will lose basic functions, such as digestion, balance, heart rate, lung capacity, and body temperature, to name some. He’s 48-years-old.
Crawford said the film — “Fighting MSA: Austin Crawford’s Story” — is hard for him to watch, personally, but he’s had extremely positive comments — these comments coming from those close to him who are finding a better understanding and from people who have the disease who have talked about the way it’s tackled the struggles of having it.
He said recently received a message from a woman in Munich, Germany, who said she watched the video and it inspired her enough to message him. She said she’s 51 and has MSA. She “asked if I had time just to speak with her. An hour and a half later we ended as friends. Such an amazing experience. Very humbled,” he said.
The film brings to light a disease, and the people who have it, that’s not well known. Those with the disease have a lifespan of 5-9 years, he said. “It’s a short time to get something conveyed.” They have been finding each other online and through forums and support groups, and they’re the best outlet for communication. There are a few benefits conducted, he said.
Phil Gioja of Center Street Productions, along with friends Isaac Musgrave and Mike Lykins who helped in the shooting, created the film. The film is sponsored by Multiple System Atrophy Coalition.
“It’s not just a film about a disease called MSA. It’s a film about choosing an attitude of hope and resilience in the face of adversity, which is something we all need right now,” he said.
Crawford said he reached out to Gioja after he saw one of Gioja’s films about a local not-for-profit.
“I wanted him to do a few minute clip for my family,” Crawford said. Two minutes led to 15 minutes. “I let Phil use his creative eye. He’s inspiring.”
“He was very complimentary about the video, and I asked him who he was. Our conversation soon turned to MSA and how he is dealing with his disease. I could immediately sense his hope, optimism, and even sense of humor, in dealing with something that most would find hopeless. The more we talked, the more I thought it might be helpful to people to capture his attitude in facing this illness,” said Gioja.
For six months Gioja and his crew followed Crawford around his home, on his bike and to different events. Watchers get to see him with his wife Amy Jo, daughter Caitlin, and service dog, Ammo.
“My takeaway from meeting Austin and working with him is that attitude and outlook is a choice. He’s been dealt a life-altering and eventually life-ending blow by a disease that is rare and incurable, that doctors do not understand, and rather than give up Austin has chosen to face it head-on. Because of his attitude and approach to this disease, and the popularity of the documentary we created together, Austin is now very possibly the most well-recognized individual with MSA in the world. Not my words — this was stated to Austin by the director of the MSA Coalition, a non-profit organization supporting MSA research.”
The film has become award winning. It was an official selection of the Golden State Film Festival and it won best documentary at the Tonkawa Film Festival. It’s been submitted to several others, Gioja said.
“I think beyond our award though, our film and especially Austin himself has won a lot more than just an award. Austin has won peoples’ hearts and shown them that they can face adversity with resilience, hope, and humor, and not give up no matter what. Our film ends with a statement that will always stick with me, where Austin lists the things he’s thankful for and says, ‘I’m the richest man in the world’,” he said.
“I love this film because it’s very simple, and yet Austin’s personality shines through. Even though he’s in a wheelchair, he can’t sit still. He always needs to keep his mind and hands busy, so we get to see him welding, ‘walking’ in the park with his dog and wheelchair, and riding his trike which was converted from a motorcycle with funding from friends. Our trike shots were fun to shoot. I had a friend of mine, Mark Peterson, drive my car while I held an action camera out the window on the end of a long pole so we could get the smooth tracking shots of Austin on his motorcycle.”
A former volunteer EMT, auxiliary police officer and firefighter, Crawford’s advice to the world: “Don’t take each day lightly.
“If you can’t change it be positive and help someone else. Let people see some positivity in their day.”
To view the video on YouTube search for “Austin Crawford Fighting Multiple System Atrophy”.
More about MSA can be found at MultipleSystemAtrophy.org.