The Fundamentals of Caring

For this neuro note I wanted to learn a little more about muscular dystrophy because I do not know much about this neuromuscular disease.  In my observations prior to starting school I saw a client in the advanced stages of muscular dystrophy, and my heart was broken at the impact this condition can have on children and young adults.  I watched a film called The Fundamentals of Caring which is about a teenage boy named Trevor who was diagnosed Duchenne muscular dystrophy when he was three years old.  The movie tells the story of him and his caregiver, Ben, who are struggling with the circumstances life has given them both.  Trevor lives his life in fear and constantly has panic attacks that something will go wrong with his health.  He does not leave the house except to go to the park one day a week, and he spends his days watching television and eating waffles afraid to leave his house due to his disability.  Trevor is 18 years old and has a motorized wheelchair for mobility but still needs assistance with many of his ADLs like using the bathroom.  He sleeps using a CPAP machine to assist his breathing, he constantly needs his hamstrings, wrists, and arms stretched, and he has an extremely rigid routine for his medicine and daily activities to reduce his panic attacks. 

Ben sees that Trevor is not really living at all and one day asks Trevor what he would like to do most if he woke up one day and was totally fine.  Trevor responds that he would want to urinate standing up.  Ben also notices that Trevor keeps a record of some of the lamest road side attractions in America like the world’s largest pit or world’s largest bovine (Pulver, 2016).  Ben thinks that Trevor would benefit greatly by experiencing the world and taking a risk, and he encourages Trevor and his mother to let them go on a road trip together.  After some hesitation they set off in a wheelchair accessible van to visit road side attractions.  The rest of the movie details their road trip and how Trevor is able to conquer some of his fears and experience more than he ever thought imaginable. 

Duchenne muscular dystrophy (DMD) is one of nine kinds of muscular dystrophy that causes muscles to weaken and degenerate (Duchenne Muscular Dystrophy, n.d.).  This kind of muscular dystrophy is genetic and results from an absence of the protein dystrophin that keeps muscle cells intact (Duchenne Muscular Dystrophy, n.d.).  Like in Trevor’s case, symptoms of DMD usually develop when the child is three years old and is more common in boys than girls.  Medical advancements have allowed individuals with DMD to have a longer life expectancy and many live until they are in their early 30s.  It is common to see individuals with DMD attend college and even get married and have families today (Duchenne Muscular Dystrophy, n.d.). 

While it would be inappropriate for occupational therapists to have the kind of relationship that Ben and Trevor have, there are so many things OTs can learn from this movie.  Ben sees that Trevor is not really living his life to the fullest because he is too afraid that something bad might happen to him.  Ben encourages Trevor to take a leap of faith and try to experience something outside of his house that he is interested in because he feels like this would be healthy for him physically, emotionally, and socially.  Trevor grows so much over the course of their road trip like going on his first date and overcoming barriers to accessibility culminating with him fulfilling his dream of urinating standing up over the world’s largest pit.  While this activity might not seem meaningful to many people, this activity helped Trevor feel like he had conquered the world and was able to partake in activities like a normal man. 

The whole movie is very client-centered and focused on helping Trevor live the last seven to ten years he has left to the fullest.  This movie also highlighted some of the tragic family dynamics that can occur around children with disabilities.  Trevor’s father left when he was three and was diagnosed with DMD.  He feels abandoned and betrayed by his father, and he is constantly bitter because his father left him.  Sadly, these family dynamics are a reality for some individuals with disabilities, and OTs can greatly contribute in this area through their therapeutic use of self.  This film also taught me the importance of using humor in therapy sessions.  Trevor at many times says inappropriate things that could leave a therapist or caregiver at a loss of what to say.  Being able to respond with humor can ease the tension and allow Trevor to process some of his bitterness and anger in a healthy manner. 

Duchenne Muscular Dystrophy (DMD). (2018, April 13). Retrieved from https://www.mda.org/disease/duchenne-muscular-dystrophy

Pulver, A. (2016). The Fundamentals of Caring review – Paul Rudd brightens amiable illness tale. Retrieved from https://www.theguardian.com/film/2016/jun/16/the-fundamentals-of-caring-review-paul-rudd-craig-roberts-selena-gomez