Adapting to life with generalized myasthenia gravis

Wayne Seward was diagnosed with generalized myasthenia gravis in 2024. (Courtesy of Wayne Seward)

This is Wayne Seward’s story:

I was officially diagnosed with generalized myasthenia gravis (gMG) in February 2024. However, my journey began a few years earlier with four symptoms: chronic fatigue, shortness of breath while relaxing, severely overheating with minimal exertion, and, my favorite, lack of bladder control. When I began experiencing these issues, doctors told me I either needed to lose 10 pounds or get more sleep.

When I received my gMG diagnosis, I was scared. I thought of all the things I’d no longer be able to do, as well as all the things that I didn’t understand yet. I didn’t realize that my journey had started years earlier.

Over time, I started adapting to my “new norm.” There are things I could do yesterday that I can’t do today, and will never do again. But I’m focused on what I can do today and into the future.

A big part of my new norm has been learning about how and why my body behaves with gMG. I’ve identified my triggers of stress, heat, humidity, and cold, and worked to better understand them.

I’ve had a couple scares in which my wife nearly called 911. The worst event was when I was trying to repair something behind my house. I was working in the shade and there was a breeze, so I thought I was safe. However, shortly after starting, I began overheating. It became difficult to breathe and I was getting confused. I realized that I hadn’t been paying attention to my body.

I finally understood that I was overheating and needed to change that as quickly as possible. I stopped working, went into the house, and got into the shower with the water as cold as I could tolerate. After standing there for about 15 minutes, I could breathe again, and the confusion was gone.

Today, I pay close attention to what my body is telling me. The other day, I was feeling great, so I walked to the end of the driveway to get the mail. On the way back, my legs became weak and heavy. Thankfully, it was a short walk. As soon as I was back in the house, I sat down and didn’t move for about 30 minutes.

I’m looking forward to the future and finding ways to travel safely. The hardest thing to plan for is when everything goes downhill. I find that my body feels great, and then a few minutes later, I’m struggling to breathe. However, I’m sure that I’ll find ways to keep myself safe and continue to enjoy life.

In recognition of Myasthenia Gravis Awareness Month in June, the Myasthenia Gravis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by myasthenia gravis, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MGSpotlight, or read the full series here.