NeuroNote 6 - Myasthenia Gravis

    For this learning experience, I chose to learn more about what the daily life of someone with Myasthenia Gravis (MG) was like. I chose this resource because I had not heard of this condition prior to learning about it in class; therefore I wanted to delve deeper into the topic, and I feel that the best way to do that is to become familiar with the daily lives of those living with the condition. 

    Alexandria Edwards began experiencing symptoms in her late teens, such as slurred speech, droopy eyes, double vision, and muscle weakness. Her symptoms continued to progress and by her early 20s she was having difficulties with swallowing, chewing, speaking, movement, and breathing. Before her diagnosis with Myasthenia Gravis, Alexandria thought that maybe she had a stroke or it could possibly be from migraines. Alexandria stated that upon receiving her diagnosis, she was not explicitly told how much her daily routine and life would need to change in order to manage her condition. I learned so much about MG from Alexandria because she went into detail on what it is like living with MG during different times of her daily living. 

    There were some difficulties and/or considerations in Alexandria's day that I had never even though of. For example, due to her ability to swallow some days she must steer clear of crunchy foods and tough foods like burgers and steak are never part of her diet. However, other days she cannot swallow at all and must get all of her medication and nutritional value for the day through a feeding tube. She also stated that she cannot get out of bed without taking her medication in the morning, but even after taking it she has to lay in bed for an hour and wait for it to kick in. These are just a few examples of the realities of living with MG that I was unaware of prior to reading Alexandria's story. 

    As I was reading Alexandria's daily routine, I could not help but think of the spoon theory that we learned about when talking about MS. She talks a lot about having enough energy to complete different tasks, as well as modifying a lot of her daily tasks. So, tasks that would not take as many of our spoons to complete would take more spoons for Alexandria to complete; which led me to think about the 4 P's of energy conservation that we also discussed in class when talking about ALS. Due to her symptoms, how she is feeling throughout the day, and her plans for that day, I would imagine that Alexandria spends a lot of time prioritizing, planning, pacing, and positioning. 

    Like I mention early, I had never even heard of MG prior to learning it in class; therefore I had absolutely no previous knowledge on the condition or the symptoms that come along with it. Whether you have heard of MG or not, I would recommend this resource to others as part of their learning experience because it is a first hand account of her daily routine and activities. Alexandria provides good insight on what it is like living with MG that can be helpful to know when working with others affected by this condition. 

Edwards, A., Nazario, B., & Wiginton, K. (2021, October 28). My Daily Life With Myasthenia Gravis. WebMD / Perspectives. https://www.webmd.com/brain/features/myasthenia-gravis-life-with