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Living with Myasthenia Gravis

I chose to watch a TED Talk on Myasthenia Gravis called One day in the life of Pallavi Rao. The reason I chose to watch a TED Talk on this disorder is because I do not know much about it and thought it would be a great opportunity to learn more about it before discussing it in class. Myasthenia Gravis is an auto immune disorder that affects muscle power in about 1 out of every 10,000 people world wide. It typically affects women earlier in their life as compared to men, and is also more prevalent in women worldwide. 

Myasthenia Gravis affects many body systems that have a muscular component. The person may begin slurring their speech as their facial muscles weaken and their eye may droop. For more severe cases, the person may have difficulty chewing, swallowing, eating, breathing, walking, and seeing. The person’s vision is often described as double-vision, meaning they see two objects for every one object that is actually present in front of them. This disorder paralyses different parts of a person’s body at different times, instead of all at once. There is no cure for this disorder, but as Pallavi Rao discussed, it is important to make things work to make life easier. Additionally, there are things in life that we are able to control and those we are unable to control. Each person must determine what is most meaningful to them and find a way to become more independent in that area. I really appreciated that she said this, because it is very similar to our mindset in occupational therapy. It is important for people, regardless of ability, to do what bring happiness to them. Pallavi Rao shared some tips that allow her to engage in everyday activities and what makes living with Myasthenia Gravis manageable.

1. Don’t carry your purse.
  It will get much heavier over time due to muscle weakness. She has her husband or son carry her purse whenever 
        possible so she is not carrying around extra weight.

2. Wake up when your body says to, not the alarm clock.
Our bodies need rest and often times more for people with this disorder. Also, don't wake up a person with        
        Myasthenia Gravis.

3. Work from home.
If you have the ability to, it allows the person to get more done because they will reduce the amount of excess walking      
        and strain on their body just to get to work. 
4. Exercise muscles to 60% of normal capacity.
For someone with Myasthenia Gravis, their muscles go weak when they exert 100%. It still essential to exercise the 
        muscles to make them stronger and prevent muscle atrophy.

5. Learn to say no.
Refrain from doing anything you do not feel comfortable with due to Myasthenia Gravis. Also, if it is not important to 
        you, it may not be worth the extra work on your body.
Pallavi Rao’s outlook on life was very encouraging. Although she has a disease that makes her feel weak while participating in everyday tasks, she does her best to be positive and find a way to engage in what is most meaningful to her. I encourage everyone to watch this story.



Talks, T. (2018, July 26). One day in the life of Pallavi Rao/ Myasthenia Gravis | PALLAVI RAO | TEDxKNC. Retrieved July 21, 2019, from https://www.youtube.com/watch?v=ybhLzwBajUw

Comments

  1. UnknownJune 15, 2021 at 1:03 PM

    My Myasthenia Gravis (MG) symptoms started at the age of 51, I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchased from multivitamincure. org which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free today,to me the best way to get rid of this condition is multivitamincure. org herbal recommendation because all medications I used never worked include mycophenolate (CellCept).

    ReplyDelete

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Logan and I on our first day of OT school.

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