How an MG diagnosis changed our lives forever

Let me paint the picture of what our world looked like three years ago. My husband, Ty, and I had been married for about eight years at the time. We were living what I would consider to be the most beautiful life.

Peaceful walks around the neighborhood were an almost daily occurrence. Routine gym sessions kept us feeling healthy and active. Weekly date nights kept us connected. Life was good. Then suddenly it felt like it wasn’t.

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I immediately knew something wasn’t right. Ty and I were in the kitchen talking nonstop as usual. He blinked, and I noticed that one of his eyes struggled to fully reopen. After confirming he had been experiencing the droopy eyelid intermittently for the past two weeks, my nursing instincts kicked in.

I urged him to visit his primary care doctor, which he immediately did. From there came visits to ophthalmology, where he received a positive ice pack test, followed by neuro-ophthalmology and neuromuscular neurology. In 2023, he was diagnosed with myasthenia gravis (MG).

What started as just an eye issue later turned into something far more concerning. Over time, Ty’s symptoms progressed from only ocular to more generalized, affecting his whole body. The symptoms got worse over time. Simple tasks like chewing, walking, talking, and writing became extremely difficult.

When he explains the feeling, he says it feels like his legs are filled with a ton of sand, which explains the scary falls. He says it feels like his brain is telling his body to do something, but his body hardly listens.

Watching my husband struggle and not being able to do anything about it is the hardest part. By nature, I’m a fixer, and unfortunately, I can’t fix this. Accepting things I cannot change became a lesson I had to learn. Then, I had to shift my mindset because I was no longer just his wife. I became a caregiver too.

Life changed. Cutting Ty’s food into small pieces was a must to reduce the number of choking episodes. Helping him get dressed was an almost daily thing because his weak arms and hands sometimes wouldn’t allow him to do so on his own. Even simple things like opening bottles and getting a cup from the cabinet became far too difficult for him.

Gaining new perspective

Initially, it was devastating. But neither of us could allow ourselves to wallow in pity for too long. We both committed to changing the way we looked at the cards we were dealt. We’ve decided to stick it out together and support each other in the best way possible.

I try to focus on the positive things, one being that more and more treatments are available. Another is that my healthcare background allows me to manage navigating the healthcare system and his health better than most people would be able to. The situation isn’t ideal, but we’ve grown closer than ever before. We’re learning to take things one day at a time.

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.