Media Project: The Page Turner

When I first heard about the Media Project assignment, I was incredibly excited!  I thought to myself, I’m super creative, this is going to be easy!  Little did I know that that mentality would change to worry in almost an instant; that instant, being the moment I heard what my material was going to be: a pair of dice.  As I sat there in class and started thinking up ideas of what I could possibly make, that’s adaptive, out of dice, I realized that I was stumped.  My case report was for a woman named Susan who was diagnosed with ALS.  I racked my brain for weeks, trying to come up with something that would work.  Arts and crafts?  No.  Communication board?  No.  I was becoming more frustrated with each passing day, and more worried as the showcase day loomed closer.  After bouncing around some ideas with my professor, she asked me a question.

            “Why not try to find something that would help her with scrapbooking?”

            Ah-ha.

            The idea came forth like a tidal wave and I instantly knew what I was going to do.  See, my client, Susan, loves to scrapbook, and hopes to create a few for her husband and children.  Remembering what we learned about ALS, fine motor control is one of the first things lost for most people diagnosed with the condition.  Since I knew that, I figured I could create something that would help Susan turn the pages of scrapbooks, so she could look at them herself or with her family around her.  As I started building my project, I became increasingly happy and satisfied with my idea.  I tested it out and found that, with some tweaks and practice, someone could easily use my equipment to flip through things, from scrapbooks to magazines, and even to books.  Through this project, I learned a lot about what I need to think of when it comes to adaptive equipment.  Sure, creating things that will be useful for the person’s impairments to come later on is great, but it is also important to remember that creating things for the person’s enjoyments is also a major accomplishment.  Knowing that I created something to help Susan be able to turn through her scrapbooks that she will have worked so hard on, I know that means more to her in the long run.  In completing this assignment, I feel like I have a better idea as to how to approach rehabilitation and the use of adaptive tech for future clients.  I also hope to pass on this newly found information to anyone else who may struggle with this project in the future or even to future therapists that I will work with once I become a licensed OT.

What Would You Choose?

APA Citation for Ted Talk video:

Rotberg, S. [TEDx Talks]. (2018, March 6). Navigating Genetic Disease Testing: A Personal Story [Video File]. Retrieved from: https://www.youtube.com/watch?v=5_O5TfMVqD8

I chose to my last Neuro Note on Huntington's Disease.  The reason I chose this particular disease is because I honestly wasn't aware of the condition before taking this class.  I think I had heard it briefly mentioned before in another class I took in undergrad, but other than that, I knew nothing about Huntington's.  I find it both fascinating and saddening that such a condition exists, but I'm hoping that with further advancement in research, a cure, or at least a way to lengthen the life expectancy of those with HD, can be found.

I ended up watching a Ted Talk on YouTube and the guest speaker was Seth Rotberg.  He was a younger man, and he opened up his talk by explaining that he had been tested positive for Huntington's Disease, since his mother had the illness as well.  He goes on to tell his story about how as he was growing up, he never really wanted to be around his mom due to the physical impairments she had because of HD.  He was 15 when he learned the name of her condition, and was a sophomore in college when he made the decision to get tested for the disease, since a parent with HD has a 50% chance of passing it down to their child(ren).  Once he had found out he tested positive, he didn't tell his family for over two years.  He discussed that once he had told them, there was immediate relief and he regretted not telling them sooner.  He goes on to discuss that he continues to live each day to the fullest and hopes that a cure for HD is found soon.

I do recommend people watch this video, because it follows the journey of a young man who is roughly our age and we see how he copes with knowing what his condition is and still tries to live life and find happiness in it, despite knowing what he has.  I also do hope that a cure for HD becomes available, and I do hope to see that cure within my lifetime. 

Brain Injuries: A Prismatic Experience

APA Citation for Ted Talk Video:

Barrett, A. M. [Tedx Talks]. (2016, August 1). A Vision of Brain Injury Rehabilitation [Video File]. Retrieved from https://www.youtube.com/watch?v=QJ-OBXTA5AE

I chose to do my 3rd Neuro Note on this Ted Talk video because the lecturer talks about TBIs and strokes, and how such injuries to the brain can lead to spatial neglect, which can cause serious complications in the rehabilitation period for a person who has suffered an injury to their brain.  I chose to do this because one of my good friends in high school was a competitive lacrosse and field hockey player.  Despite physical contact being prohibited, she still suffered multiple hits to the head in both sports.  Because of this, she was left was permanent eyesight problems.  One of my other good friends received a concussion and was taking out of the our rowing program for months because her brain was healing fast enough to allow her to get back into the sport.  In all this, I watched and saw what how intimately a person's life can be effected by brain injuries.

In this video, A.M. Barrett, a cognitive neurologist, gives a talk on brain injuries, specifically TBIs and strokes and how both can cause spatial neglect in a person who has suffered from either.  She pulls up pictures of patients who cannot complete things on their left side, as the injury was to their right hemisphere, therefore everything on their left side has been effected.  She goes on to explain how such spatial neglect can cause serious delay on a person's rehabilitation, as well as dramatically increase their risk of falls.  She then proceeds to discuss a new, innovative, yet cheap method in rehabilitation for those with spatial neglect.  She called it the prism adaptation, which is a pair of goggles with prisms in each lens, with the left side of each lens being higher than the right sides.  This treatment, as she explained in the video, has been shown to increase a patient's independence by helping them regain the spatial awareness that they had lost post-injury.  She talked about how not many hospitals or rehab clinics use this type of treatment, but hopes that they will in the future.

As future occupational therapists, I think this video is important because we will eventually work with clients who have suffered from TBIs or strokes, and with this treatment because affordable, as well as easy to use and train other therapists with, I think advocating for this will become a necessity if we want to see clients have more independence in the long run.

ALS: A Theory

APA Citation for Movie:

Bevan, T. et. al (Producers), & Marsh, J. (Director). (2014). The Theory of Everything [Motion Picture].  United Kingdom: Universal Pictures.

I chose to do my second Neuro Note on Amyotrophic Lateral Sclerosis, or ALS, because it is a condition that I am very much interested in.  As we have been learning more about the disease in class, I realize my interest for it grows.  Also, my media project revolves around a case about a woman with ALS, so I wanted to learn more about the condition and how I can do better for my future project.

The movie I decided to watch for my neuro note was The Theory of Everything, which follows the famous physicist, Stephen Hawking, and his journey through his diagnosis of ALS in his early 20s, to pursuing a long-term relationship with Jane Wilde, who he would eventually marry and have three children with.  The movie follows Stephen's journey as he moves further in his career, not allowing his progressively disabling condition to stop him from continuing his work on the well known "Black Hole Theory".  It also follows how Jane, his wife, dealt with the hardships of being both a caregiver, and a loving spouse and mother to their children.  It shows how she has to put her own thesis on hold to care for him and the kids, and becomes frustrated with the circumstances.

The movie follows the hardships of ALS, not only for the person who is diagnosed with the disease, slowly losing their ability to control movement, but also for the person's family, both immediate and extended.  Jane and Stephen eventually divorced and married new people, but remained friends until Stephen's death in March of 2018, at the age of 76.  He holds the longest recorded time of having ALS at 55 years.  ALS is incredibly debilitating and currently there is no cure for the disease.  The average prognosis for most individuals diagnosed with it is normally 2 to 5 years.  The Theory of Everything showed how quickly the condition can worsen, how it can impact the closest of relationships, and what it takes to stay strong, even through the hardest moments.  The movie is currently available on Netflix, and if you have not seen this movie, I highly recommend you do so.  It places you in a perspective that, thankfully, not many have to go through in their lifetimes.  

UK release poster