Neuro Note ALS

Juli Stolpmann

TransFatty Lives is an 85-minute documentary that features Patrick O’Brien, a man who has amyotrophic lateral sclerosis (ALS). I decided to watch this Netflix movie because the only thing I knew about ALS was the Ice Bucket Challenge, but I did not know what actually happened in the body. ALS is a progressive disease that affects the muscles that produce voluntary movement such as; walking, talking, chewing, and breathing. In the later stages of ALS, most people are completely paralyzed, but their minds remain sharp and alert.

            The first symptoms Patrick noticed was leg tremors, which made it difficult for him to walk.  He decided to get an expert opinion and the doctor told him he had 2-5 years to live. Patrick was in film school when he was diagnosed, so he decided to turn the camera on himself to document the debilitating journey.

            The documentary captures Patrick’s eccentric sense of humor, talent for creating unusual art, his political views, and love for his family and friends. After having ALS for about a year, Patrick falls in love and has a son with his girlfriend. When Sean (Patricks’ son) was born, Patrick lost the ability to control his limbs and struggled with talking. Being a disabled father was challenging, but Patrick did his best to help care for his son. In one scene he said, “my coughing fits and leg spasms actually come in handy as they rock you to sleep.” Patrick always seemed to turn a negative into a positive, but one day he got extremely sick.

            One of the biggest milestones for someone with ALS is when their diaphragm stops working. Patrick ultimately had to decide whether to live or die. He chose life! However, this came with the cost of living on a ventilator for the rest of his life. Patrick moved into a nursing home so he could receive proper care, but his girlfriend and son did not visit him once. At this point in Patrick’s life he struggled with extreme paranoia and depression.

In the nursing home, Patrick posted on social media daily to raise awareness for ALS. One man was inspired by Patrick’s determination and offered him a place to live at a facility specifically for people with ALS called Leonard Florence Center for Living. Finally, Patrick’s life was making a turn for the best!

I enjoyed watching Patrick’s journey, and I feel as though it truly captured what life is like for a person with ALS. While I watched the documentary, I questioned what I would have done if I was in Patrick’s situation. They do not mention in the documentary that ALS can be hereditary, but only 5-10% of ALS cases are caused by inheriting the gene from a parent (NINDS, 2018). I could not imagine having a child, knowing that I would not be able to care for him/her properly. I am still unsure on what I would do in Patrick’s situation.

At times the documentary was difficult to watch. On a couple of occasions Patrick had people pour beer into his feeding tube! I thought this was outrageous, but if it made Patrick happy, then so be it. At the end of the film, I got emotional because Patrick was living a nightmare in the nursing home and he finally found happiness. Overall, I thought this documentary was educational and I would definitely recommend it to a friend!

References 

National Institute of Neurological Disorders and Stroke. (2018). Amyotrophic Lateral Sclerosis (ALS) Fact Sheet. Retrieved April 19, 2018, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet

O'Brien, P. (Director). (2015). TransFatty Lives [Video file]. Retrieved April 19, 2018, from https://www.netflix.com/title/80053399