I’m learning to be more considerate of my brother’s energy levels with MG

I live in Manila, Philippines, while my twin brother, Aaron, still calls our hometown of New York City home. Depending on daylight saving time, there is about a 12-hour time difference between us. When it’s morning or afternoon here in Manila, it’s early evening or late at night in New York.

We sometimes talk about his condition, myasthenia gravis (MG), but not always. Other times, we frequently bond over our shared love of comic books, superhero movies, and sports. Yet for 26 years, we barely mentioned his MG. Lately, though, learning how it affects him has become increasingly important to me.

Sometimes, I reach out to Aaron via social media or email without considering the time difference. I can tell when he’s groggy by the long pauses between his responses. Yet Aaron always makes an effort to chat, regardless of how much energy he has.

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As I learn more about MG flare-ups and the importance of managing his emotions, I’m realizing I haven’t always considered his energy levels when we chat. Lately, I find myself reflecting on this more often.

Sometimes I get homesick and miss shooting the breeze in person with my twin. Still, it surprises me that I haven’t always considered that he might not have the energy to chat.

Aaron told me that since his diagnosis, he usually feels like he’s at 80% of his best, even on his most energetic days. A good night’s sleep can help him recover after a flare-up. His regular Soliris (eculizumab) infusions also help combat muscle weakness, boosting his energy.

On hot summer days, Aaron’s energy can drop to just 20%, and it might take a day for him to fully recover. Right now, there’s a winter storm in New York, and while Aaron doesn’t enjoy the intense cold, he pointed out that at least he doesn’t have to worry about his energy draining as much as it does in the summer.

He laughs when I admit I don’t understand how he manages to go to the gym with his condition. But regular exercise strengthens his muscles, boosts his energy, and helps him maintain a healthy weight.

I was surprised when Aaron mentioned he was considering massage therapy, since I don’t think he’s ever had one before. Low-intensity physical therapy can reduce stress, improve muscle strength, and boost circulation.

When I asked how he copes with low energy, Aaron told me he keeps a diary to track his energy peaks and slumps. He prioritizes his daily or weekly activities based on how he’s feeling, which helps reduce exhaustion. For example, he’ll skip the supermarket or the gym if he’s only at 20%.

Still, Aaron admitted that even with the diary, his energy levels follow no regular pattern — some days are simply better than others.

I asked him when the best time would be to contact him. We always make time for each other, but I don’t want to reach out when his energy is low. He assured me I’m always welcome to contact him, no matter the hour, as he’ll always find the energy to chat.

I know that, but I still plan to be more mindful about when I reach out. Some days, I don’t have the energy to chat, either. Positive energy fuels connection, so from now on, I’ll try to contact him at normal hours or when I see he’s online.

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.