Media Project -- Joe with Transverse Myelitis

For my media project, I was assigned a brown paper grocery bag for Joe, a client with Transverse Myelitis. I initially had many ideas on products Joe could make and interventions he could with the grocery bag, however, I quickly realized that grocery bags are not as durable as I wanted to believe. After this, I had “OT’s block.” I could not come up with any ideas to target the weakness and loss of sensation in his legs. Eventually, the light bulb appeared above my head. This was my “ah-ha” moment. I realized that my product did not have to target Joe’s legs. It could help him do the activities he enjoys or the occupations he does on a regular basis more independently. That realization triggered the idea of creating a basket to hold his grooming products because he is unable to stand up to gather the items he needs.

Before this assignment, I had never heard of Transverse Myelitis. This project gave me the opportunity to learn about this disorder. Transverse Myelitis causes weakness and loss of sensation in the legs or arms, as well as difficulty with bowel and bladder function, all of which Joe struggled with. However, Joe was still able to go about parts of his day independently. This is where I felt the most challenged. I needed to provide an intervention or adaptive equipment for a client who is not fully dependent, but not fully independent. This is not an uncommon situation for a client to be in, so I took full advantage of challenging myself to find the perfect fit for Joe.

In the future when I am working with clients who are in situations similar to Joe’s, I will encourage myself to think about my class sessions and what principles I can take from class and apply to the situation. In Joe’s case, I emphasized on the second “P” of the 4 P’s—planning. By placing his grooming items in a more efficient point of access, he is now able to do one more activity independently. Although it is just one activity in my eyes, I imagine that every ounce of independence means the world to clients who have learned what it is like to lose the ability to groom, shower, or dress independently.

Top: "Challenges and Barriers: Requires set up for grooming, no adaptive equipment, legs cannot bear weight to stand"
Bottom: "Goal: Joe will set up and groom himself using the Grocery Bag Grooming Basket 5/7 times a week in the next two weeks to become more independent in his daily routine."

Bottom: "The Grocery Bag Grooming Basket will allow Joe to be more independent by organizing his grooming products in a compact way to have the readily available for use."

Top left: "Studied Business at University of Neurological Aspects

 Lives in Large City, TN

In a relationship with Joelene

Born January 26, 1996 (Age 22)"

Middle Left: "Likes: Hockey, New Movies, Eating with Joelene, Basketball"

Bottom Left: "Principles of Energy Conservation: Prioritizing, PLANNING, Pacing, Positioning

By utilizing the Principles of Energy Conservation, we were able to create a point of access for Joe's grooming items."

Top Right: "Joe shared a photo. I spoke and she listened! This is the 'grooming basket' I made in my OT session today so that Joelene doesn't have to get my things together every morning!" 

Second Status on Right: "Excited to start rehabilitation today... well mainly OT. Ready to be able to get myself ready in the mornings again!" 

Third Status on Right: "My legs are feeling oddly weak and numb... the doctor thinks it is Transverse Myelitis."

Bottom Status on Right: "Ready to go see Incredibles 2 with Joelene!"

NeuroNote #4 -- You're Not You

For my final NeuroNote, I watched the movie You’re Not You. This movie is centered around Kate, a pianist who is diagnosed with ALS. In the midst of her horrible condition, her husband has an affair and she hires a college student as a caregiver. This movie follows her experiences with ALS with her caregiver, Bec, by her side.

         This movie expresses the importance of relationships with others. When Kate and her husband split, she was left with only her caregiver, whom she had only known for a short period of time. This means that Kate was literally putting her life in the hands of someone she barely knew. Later in the movie, Kate attempts to fire Bec, leaving her with her mother to take care of her. Kate’s mother has not visited her since being diagnosed and upon taking care of her, she began neglecting Kate’s preferences. This part of the movie stressed how important it is, especially in OT, that what is easiest for you is not always what the client wants. You have to be client centered, and if that means going the extra mile to dress them in their favorite pair of pajamas rather than a hospital gown, so be it.

This movie also covered the importance of planning. We talked about the importance of an early diagnosis in order to plan your future. This movie made me think about the importance of your loved ones planning. In the film, Kate begins coughing horribly and Bec attempts to call 911. Kate tells Bec that she is not to call 911 unless she is told to do so. Kate, even in the most serious situations, still wanted to know that she could make her own decisions for herself. She wanted to ensure that her caretaker, who would one day make Kate’s final decision, would be sure to make the decision that Kate would have made. Bec then takes into perspective that she must prepare herself to handle allowing Kate to die. Kate sees a friend also diagnosed with ALS on a ventilator and Kate tells Bec that she does not want that to be her future, which meant dying earlier than expected. Bec has to plan for the most horrible situation one can be put in—loving someone, but keeping true to their requests and allowing them to die.

One of my favorite scenes in the movie is one in which a letter is read about Lou Gehrig. He is not just a disease. He was a baseball player for the New York Yankees. He had a life he loved and referred to himself as “the luckiest man on Earth.” This scene screams OT. Occupational therapists see clients’ needs, wants, hobbies, and their personal lives before we see their diagnosis. We look at who someone is, now what their disabilities are.

I chose to watch this film because my seventh-grade teacher was diagnosed with ALS. Her progression has been very slow, but it has been steady. I was very curious as to what her progression has been like and I felt that this movie could give some insight. I would recommend this movie to anyone curious about ALS and its progression. You can access this movie on Netflix, as I did, or rent it on Amazon for $3.99.

Swank, H., Greenspan, A., & Smith, M. (Producers), Wolfe, G. (Director). (2014) You’re Not You [Motion Picture]. United States: EOne Entertainment.