Neuro note 2 - Sheryl and Myasthenia Gravis: How I cope!

For my second neuro note, I focused my search on looking for a video or blog telling about a person's life, the disease they face, and part of their story.  I ended up finding this YouTube video about a girl named Sheryl that tells about how she copes with her condition, myasthenia gravis. 

Sheryl is a 17 year old girl that was diagnosed with myasthenia gravis at age 16.  In this video, she talks about the onset of the disease, the description of the disease, and how she deals with it.  Myasthenia gravis is a condition that inhibits the communication between neurons and muscles causing extreme muscle fatigue in voluntary muscles.  Common symptoms are muscle weakness, drooping face, drooping eyelids, and trouble talking, breathing, eating, and swallowing.  Sheryl talks about how she began to experience some of these symptoms one day at school and then the process of being diagnosed with myasthenia gravis.  She receives a treatment called plasmapheresis that keeps her symptoms at bay for a time.  Because of her disease, she can no longer participate in activities to the same degree that she used to.  She talks about how she has made modifications to activities in order to continue participating in some way.  For example, she enjoyed playing softball before her diagnosis and now she cannot play in a game but she continues to participate by going to games and cheering on her teammates and by going to the batting cages to do what she can. 

Listening to her story was inspiring.  I cannot imagine the difficulty of a disability like this while also trying to be a teenager.  I felt sorry for her and yet, she did not feel sorry for herself.  She looked for what she could do, what made her happy, and did it.  She is striving to live as normal of a life as possible.  She even spoke about returning to school after some time spent in and out of the hospital.  However, my favorite part of the video was probably the end when she was showing random pictures she took on her iPad.  This part showed just showed how human she is and how she has many interests that she continues to pursue.  I am reminded that I should encourage the interests of my future clients, especially those with a chronic disease.  I can see the importance of retaining as much normality as possible.  Please go watch this video for yourself to gain insight into this disease and the coping strategies of those dealing with it.

Carter, B. [Bryan Carter]. (2014, October 23). Sheryl and Myasthenia Gravis: How I cope! [Video file]. Retrieved from https://www.youtube.com/watch?v=UZU2nTf6_cc

Mayo Clinic Staff (2016, April 23). Myasthenia gravis. Mayo Clinic. Retrieved from http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/home/ovc-20200259