For my third Neuro Note, I decided to watch the Netflix documentary, "TransFatty Lives". This documentary depicts what life is like for Patrick O'Brien, a 30-year-old film maker and director from New Jersey who has been diagnosed with ALS, or amyotrophic lateral sclerosis. I chose this documentary because Professor Lancaster had mentioned it in class, and I knew a few of my other classmates that had watched it and recommended it. In our Neurological Aspects of OT class, we just learned about ALS, and I thought watching this documentary would enhance my knowledge and understanding of this diagnosis.
Before I started OT school, I had no idea what ALS was. I had heard about people doing the Ice Bucket Challenge a few years ago, and my Facebook feed was blowing up with videos of people participating in the challenge. I knew that this disease was debilitating, but I didn't realize how crippling it was until I learned about it in class and watched this documentary.
Patrick's story begins when he is first diagnosed with ALS at the age of 30 in the Spring of 2005. Before his diagnosis, Patrick was a creative, out-of-the-box film maker who had a very lively, outgoing personality. There was no one else like him. His doctors gave him 2-5 years to live. On a trip he took six months ago, he first began to notice his leg trembling. Through the documentary, Patrick deals with his worsening symptoms, including weakness, trembling, and severe muscle fatigue. Eventually, Patrick loses his ability to walk, feed himself, dress himself, shower himself, and perform all the other activities of daily living that we often take for granted.
Though Patrick was diagnosed with a terminal illness, he was still able to find love. He met Laura in the Winter of 2006, and they fell in love. He jokes about still being able to have sex, despite his diagnosis. Patrick is ecstatic when Laura gives birth to their son, Sean Patrick.
As his condition worsens, the one thing that Patrick said that matters most to him is his son. It broke my heart when Patrick said he couldn't hold him, play with him, or be there with him when he got older. All he wanted was to watch his son grow up, but Laura moved to Florida, while Patrick stayed in Maryland.
In 2010, Patrick moved to a facility in Boston, Massachusetts that gives individualized care to people with ALS.
While watching this film, there were a few things Patrick said that really stood out to me. "You can’t help it, so you may as well go with it and stay positive". "When there's nothing you can do, simply surrender." That one absolutely broke my heart. And finally, “Thank God I still have my mind, that’s the only thing I have left to control”. He goes on to say that he has become a better person, and has witnessed those around him being transformed as well. He stopped focusing on the things that weren't important, and started focusing on the things that were important to him.
It breaks my heart that this fatal disease has no cure. It has really opened my eyes to what Patrick and others living with ALS, as well as their caregivers, have to deal with on a daily basis. Things we take for granted, like eating, walking, and even playing with our children, were stripped away from Patrick. Despite his diagnosis, he still finds purpose in his life by using social media and blogging as a platform to educate people and advocate for his disease and others living with ALS. I would highly recommend this documentary to anyone who wants to increase their knowledge and understanding of ALS.
You can access the documentary at the link posted below:
O'Brien, P. (Director). (2015). TransFatty Lives [Documentary]. Retrieved from: https://www.netflix.com/search?q=transfatty.
Well written, Chelsea!
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