Neuro Note on a Man's Journey with ALS

For my second Neuro Note, I chose the documentary Gleason, which is about a former NFL player named Steve Gleason and his journey after being diagnosed with ALS (Tweel, 2016). While I was searching for something to watch for this assignment, I came across this documentary. At first glance, it seemed “too long” being nearly two hours. Despite this, I decided to watch a short clip from a random part of the movie to “test it out.” The clip started with Steve walking onto the New Orleans’s Saints football field wearing his retired jersey and jeans with two teammates on either side of him. The emotions I felt in this brief clip led me commit to the near two hours of watch time! To further my learning during this experience I took notes and also tried to think about the ways it relates to what we’ve been learning in Neuro Aspects and what I know about occupational therapy in general.

This documentary covers from when Steven initially gets diagnosed with ALS at 34 years of age to about four years post diagnosis. It did an excellent job detailing the raw, severe, emotional decline in health and independence that Steven experienced during this time. Six weeks after being diagnosed with ALS, Steve and his wife found out that they were expecting a baby. Despite this, they wanted to take advantage of Steve’s independence while it was still available and chose to take a two-month long road trip to Alaska and explore its beautiful scenery. The couple participated in additional exertions with increasing help throughout the rest his journey. 

Watching this documentary helped me gain an insider’s perspective on ALS and also help solidify what I had learned about it already in Neuro Aspects. For instance, Steven reported the initial symptoms he experienced that led him to meet with his doctor including; muscle twitching in his arms, chest, back and even upper legs. These symptoms overlap with what we learned in class. The film also confirmed that ALS is a disease involving one’s motor neuron and that their cognitive abilities are not affected. At nine months post diagnosis, Steven’s speech deficits, or dysarthria like we’ve learned in Neuro, were noticeable, however he was still able to walk. Steve lost his ability to speak at about two years post diagnosis; he chose an assistive speaking device accessed by eye gaze technology that used his own recorded voice when used to audibly communicate, which I thought was pretty cool! I remembered from class that people with ALS typically have to get feeding tubes and have the choice to go on a ventilator when they are no longer able to breathe or swallow on their own; Steve opted in for both these procedures in hopes of extending time with his family. He also tried a stem cell transplant procedure (that turned out to be ineffective); this is a new treatment option that I learned about. Another piece of knowledge that I gained through viewing this film was about the Stephen Gleason Act that president Obama signed into law July 2015. This act helps people with ALS who have lost the ability to speak have access to assistive communication devices that use eye gaze technology (since ocular muscle remain intact for those with ALS). 

Although many aspects of this film were heartbreaking, I still believe this film is 100% worth watching, especially for occupational therapists! It illustrates an insider’s perspective on how this disease manifest itself and brings light to how an occupational therapist might choose to interact with an individual diagnosed with ALS and their family including; client education, appropriate assistive technology and end-of-life care decision making. 

  
A hyperlink to the film is provided here:
https://www.amazon.com/Gleason-Steve/dp/B01I2BH81W

Reference: 
Tweel, C. (Director). (2016). Gleason [Video file]. United States: Dear Rivers Production. Retrieved August 13, 2019, from https://www.amazon.com/Gleason-Steve/dp/B01I2BH81W