My twin with MG takes several precautions before going outside
With careful planning, my brother is able to venture out safely
I don’t enjoy going outside now as much as I did in my youth. I’m a homebody and I like it. This transition made me think of my twin, Aaron, who has myasthenia gravis (MG).
Before MG, Aaron was a manual laborer who was very sociable and loved going out often. After his diagnosis, Aaron became a homebody and started playing video games to cope with his new reality. Because of his MG symptoms, he’s not able to go outside as often as he’d like.
Aaron recently told me that he got trapped in a public restroom a few years ago. Muscle weakness in his hands meant he couldn’t turn the stainless-steel doorknob to get out. A reader left a comment recounting how she has also gotten trapped in a public restroom on two occasions for the same reason as Aaron.
This made me wonder what precautions Aaron takes before going outside or running errands.
How Aaron prepares
When I asked Aaron how often he goes outside, he said, “Not much.” Unless he’s going to the gym or running errands, Aaron likes to be at home. He told me that while he still enjoys going out, doing so involves a lot of preparation.
How far he goes depends on how much energy he has. Heat exacerbates his MG, so he stays home when the temperature rises. If he has to go somewhere but has lower energy levels, he’ll try to go with a relative. Sometimes this is hard because he enjoys his autonomy, but he has fallen a few times. Luckily, a family member was always nearby.
Aaron also told me that he doesn’t go out at night if he can help it. He dealt with severe eye misalignment issues for decades, and though a successful strabismus surgery in late 2024 straightened his eyes, they are now fixed forward. Additionally, Aaron deals with recurring double vision. As a result, he’s not always comfortable walking around New York City late at night.
Aaron always packs eye drops and some of his MG meds in his pocket before he goes out. He also carries an official letter from his doctor that explains his medical condition in case of an accident.
Aaron always makes sure the heels of his shoes aren’t too worn down. He was always more of a fashionable dresser than me, but this choice is very pragmatic, as worn-down heels can cause him to lose his balance, trip, or fall.
Aaron reassures me that he has not given up on going outside. After all, he still frequents a local gym and often shops alone. He just takes extra precautions to keep himself safe.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.