"Myasthenia Gravis: Kristen's Story"

For my fourth and final neuro note, I chose to view a video about a young lady who told her story and experience with Myasthenia Gravis. I chose this video because I wanted more exposure and understanding about this diagnosis from someone’s personal experience.

Kristen opens the video by explaining that Myasthenia Gravis means “grave muscle disease” and includes two types: ocular myasthenia and generalized myasthenia. Kristen was diagnosed with ocular myasthenia gravis when she turned 11 which manifested itself as droopy eyelids and double vision. She goes on to explain that it very quickly spread to her body and included weakness in muscles and difficulty with breathing. She reports that it took many months to diagnose. Upon diagnosis, doctors prescribed Kristen medication and eventually she underwent a thymectomy. She explains the thymus is believed to be related to the onset and could lead to a remission. She did in fact experience a remission and complete the rest of her schooling symptom free.

Kristen Left high school early and worked as a hairdresser and eventually realized the work environment was toxic for her body and mind. When she had gone to the hospital twice within 48 hours, it was a wakeup call to change her lifestyle and begin taking better care of herself. It turned out that one of the reasons for her recent hospitalizations was due to side effects of the drug she was taking. Because she was reacting poorly to her medication, she decided to begin experimenting with a more holistic approach. She lightened her work load and incorporated yoga and a plant based diet.  

              During her first yoga class she describes feeling very weak but eventually developed stability and  strength. She explains that yoga taught her to meet every day with the strength she has and make modifications for areas where she is lacking. She began to meet the day with acceptance. After this drastic lifestyle change, she went back to the doctor who couldn’t find trace of myasthenia gravis in her system.

The lesson she learned from yoga of accepting her energy levels and making appropriate modifications each day was a big take away point for me that I feel really applies to our profession. Occupational therapy helps people like Kristen make modifications and implement energy conservation techniques to enable participation in what they enjoy most. Also, instead of focusing on what she couldn’t do, she learned to focus on what she could do. This also reminded me of the holistic approach our profession takes in their focus on a client’s abilities rather than first focusing on their disabilities. Overall, I found Kristen’s journey inspiring and feel more confident in my knowledge of Myasthenia Gravis and the role for occupational therapy.