I don’t want to lean on my brother too hard if he doesn’t want to lean on me

Even 26 years after his myasthenia gravis (MG) diagnosis, my twin brother, Aaron, struggles to talk about the effects of his disease. But he is beginning to open up a little more.

Recently, he’s begun to talk about the trouble he has with walking. I thought this was an issue that started only a few years ago, which is when I first learned of it. But he tells me now that he has struggled with walking, leg muscle weakness, and balance since his diagnosis.

He told me not too long ago that he had fallen in the street and has had difficulty going up stairs. The cold weather this winter had given him a little extra energy, though, and he was able to will himself to the gym. He even managed to walk up five flights of stairs to his apartment, which he sometimes does if the elevator is out.

I told him I worry more about him going down, not up, a set of stairs — like Chevy Chase doing his impersonation of President Gerald Ford. That skit used to make us laugh, and we laughed as we remembered it.

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I wonder if Aaron has mostly kept the severity of his leg muscle weakness and the emotional weight of his disease to himself because he worries about being a burden to me. Maybe he doesn’t want to face losing his independence and have to fully accept his disability and the limitations it is putting on him.

I wonder why I didn’t make a better effort to fully understand his disease a long time ago. We talk more openly now, but I don’t know sometimes when we talk on the phone if I’m interviewing him or interrogating him. If I push too hard to understand, or push my advice on him, will he just shut back down? Is it my place to suggest what he should do? But how hard should he keep pushing himself?

I’ve suggested that Aaron use a cane to help him get around. He’s politely brushed the suggestion off, but admitted that his doctor also recommended that he get one.

I get a little irritated about him taking risks, but I don’t want to lean on him too hard if he doesn’t want to lean on me.

Maybe he will be willing to lean on a cane. He said he would, but I doubt it will be soon.

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.