The muscle weakness from my twin’s MG is worse than I realized

Author Tom Clancy once wrote, “Surviving is much more painful than death.” Realizing how much my twin brother, Aaron, has been surviving with myasthenia gravis (MG) since his diagnosis in 1999 when he was 24 is painful for me.

He lives in New York and I live in Manila in the Philippines, and we have been talking online about his MG for the last several months, about his condition, and specifically about his flare-ups of muscle weakness.

Aaron told me he sometimes cannot carry grocery bags home from the supermarket.

“It’s still hard to hold a bag sometimes,” Aaron said. “I have to hold it around my wrist sometimes.”

While I chided him that at our age, almost 50, carrying a heavy load on his wrist risked a fracture, I thought to myself I must have been convinced that Aaron’s muscle weakness wasn’t as bad now as when he was first diagnosed. His limbs seemed paralyzed then. Perhaps I told myself that to feel better. Maybe I didn’t want to think about how much my brother was affected by MG. Someone recently told me I was suffering from survivor’s guilt for being the twin brother not diagnosed with the disease.

Aside from living with MG, Aaron seems relatively healthy. He keeps his doctor’s appointments and takes his medications. His muscle weakness wasn’t as obvious as his badly misaligned eyes, which he hid by wearing sunglasses for decades, but recently corrected with strabismus surgery. His doctor wants him to have a follow-up procedure and he is considering it.

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His muscle weakness flare-ups are a constant

Aaron is the caretaker of our 3,000-plus comic book collection, and he told me he struggles to move more than a few boxes of comics before he has to stop to rest.

He’s also an avid gamer — his escape from reality — but I never used to appreciate that he only used his fingers and thumbs when he handled his video game controller.

My brother also works out whenever he can, but I only recently learned that his workouts are limited by the severity of his flare-ups. Fiddling your fingers on a video game controller is not the same as using finger grip strength to lift things, so learning his workouts are affected by flare-ups shattered my illusion about the severity of his muscle weakness.

Aaron told me it usually takes 48 hours for flare-ups to ease, but his meds do help a lot. Still, almost 26 years since he was first diagnosed, Aaron is surviving with severe muscle weakness flare-ups that are as bad as when he was first diagnosed.

Maybe Aaron’s muscle weakness is worse than I realized. Or maybe it was always this bad and he has just learned to deal with the flare-ups with medication and rest.

I applaud my twin brother’s strength, but our conversation was difficult for me. No matter how much strength and dignity a person has, MG is something one must continually contend with to survive. As his twin brother, I want to understand and relate to this, but I cannot.

I am happy I’m learning these things, but I don’t know my twin’s life as well as I thought I did. As painful as these revelations are, I’m determined to learn more.

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.