I wanted to save my twin, but he takes care of himself

I think I’ve been looking for ways to save or help my twin brother, Aaron, for years now. I’ve come to this realization before, when someone mentioned to me that I might have survivor’s guilt because Aaron developed myasthenia gravis (MG) at a young age, and I did not.

Recently, while tinkering with a comic book idea with Aaron, I researched cold vests for MG patients. The idea is that local cooling — such as with gels, ice packs, or circulating cold air — could help mitigate certain MG symptoms, though more research is needed.

Since the comic book would feature a character with MG, I thought I could incorporate a cold vest into the story. Aaron loved the idea. But when I mentioned that perhaps he should try some variation of cooling therapy, he told me he already did.

Why was I a little disappointed? Does that make me a bad guy?

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Sept. 27, 2024 Columns by Allen Francis

My twin has MG, and I have survivor’s guilt

Cold treatment, cold reality

The heat tends to exacerbate Aaron’s symptoms, especially during the hot New York City summers. He has talked about possibly moving to a colder climate as he gets older, but I wondered if there was something more he could do now.

I suggested that Aaron try taking short ice baths, experimenting with the temperature and duration, and keep a diary of the effects.

Aaron said he occasionally takes cold baths, and sometimes the muscle weakness in his extremities subsides appreciably for half an hour or so, but never disappears. He also mentioned that he asked his doctor about it some time ago. The doctor wasn’t against it, but advised caution, as immersion in ice-cold water could cause shock and induce a severe stress response for someone with MG.

He said he was very interested in the cold vest idea, but it’s not a realistic treatment option for him right now.

It wasn’t just that I felt I had a good suggestion; I wanted it to be a game-changing idea that would make a big difference. But Aaron has thought about this before. It wasn’t breaking news to him.

I’ve been putting a lot of unnecessary pressure on myself to help Aaron, maybe to assuage guilt or make myself feel better, but he doesn’t need me to save him. He’s been taking care of himself for a long time now. I just need to be his brother.

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.