Living with Myasthenia Gravis

In Ted Talk "One day in the life of Pallavi Rao" (2018), Pallavi Rao explains how she lived with myasthenia gravis (MG). Currently, her biggest challenges are fatigue and slurred speech. She says she occasionally experiences diplopia, and she says some days are better than other days.

In her Ted Talk, Rao talks about 3 of the 4 Ps of Energy Conservation: Planning, Pacing, Prioritizing, and Positioning. She understands that her body only has a certain amount of energy, and she must decide how to use her energy most effectively. She uses the visual of having two circles. One circle represents "what you have control over," and the other circle represents "what matters the most to you." It is important to focus on the area where the two circles meet: "what you have control over and what means the most to you" in order to live as independent as possible. It is also important to find things in life that make things easier, in particular utilizing the 4 Ps.

Rio says she plans out her day. The day she gives the Ted Talk, she is not planning any events before or after the Ted Talk. She understands that the Ted Talk will take a lot of energy out of her, especially talking for 12 minutes. Her "talking muscles" will be weary by the end of it, so she does not want to overload herself with other activities. For prioritizing, she understands that it is important to identify what is most important and to save enough energy to complete those tasks. Rio says that her husband or son carries her handbag when they are shopping. Her handbag can be very heavy, so she lets someone else carry it so she can engage in other activities that are more important to her. She understands not to waste her energy on things that she does not have to. Rio tells the audience that it is very important to never wake up someone with MG. A person diagnosed with MG will wake up whenever he/she feels refreshed and ready to start exerting energy.

I chose this Ted Talk because despite her obstacles, Rio has learned to say "thank you." She thanks MG for helping her manage expectations and live life according to her expectations and not other people's expectations. She has also learned how to respect and love her body. She listens to her body and does not "overload" it with unrealistic expectations. I really value Rio's encouraging spirit, and as a future Occupational Therapist, I want to help my clients live with a positive mindset despite any deficits. With today's advancement in technology, it is easy to still live a "normal" life with some modifications or assistive technology. I want to help my future clients embrace their deficits and not be embarrassed or intimidated by them.

After listening to this Ted Talk, I was reminded how important energy conservation is for certain people. I also realized how important it is to educate people using the 4 Ps of energy conservation. Luckily, Rio understands the importance of energy conservation, and she knows how to apply that knowledge to her everyday lifestyle. Unfortunately, not everyone diagnosed with MG or similar diagnoses know the importance of the 4 Ps or how to apply them. Therefore, as a future occupational therapists, I can teach people how to conserve energy to improve their quality of life.

It would be interesting to interview people with similar diagnoses and see if they know how to conserve energy effectively. It would also be interesting to know how their daily routine looks and see if there are any modifications that can be made to make life easier.

Reference List
TED. (2018, July). One day in the life of Pallavi Rao/ myasthenia gravis. Retrieved from https://www.youtube.com/watch?v=ybhLzwBajUw