a board game of MG and myasthenia gravis setbacks

Two Steps Forward, One Step Back ... the MG Dance

Myasthenia gravis (MG) is sometimes a little like Lucy and the football. You make careful life changes, modify your goals, take your meds, follow doctors’ orders, and symptoms seem to settle down. Sometimes your team even uses the term "remission."

But then something happens. Things fall apart! It could be a sinus infection or a strain, a week of stress, or a day of heavy work. With MG it can be anything. Your body’s immune system rebels. The eye droop or double vision come back. Your weak vocal cords cry for more air. Or your balance goes bonkers.

A recent setback

For my husband, the most recent setback started with a fall (the result of some inner ear thing). He probably a cracked rib. Our primary care physician told us there was no real cure; just a lot of Tylenol and sitting really still. The risk of COVID wouldn’t justify a hospital stay. But that change in routine really set the clock back.

The physical effects of a setback are usually temporary, but the psych is harder to handle. MG is a downer on a good day. "Just when you think it’s safe to come out of the house ..." Losing that sense of progress can also be a source of true depression. Moving forward then stepping backward is truly depressing.

That stage of life

It is even worse for those like my hubby who face this roller coaster later in life. Late onset myasthenia gravis is a sneaky condition. We learned that it has some differences from the condition when it occurs earlier in life. In these folks (like my husband) swallowing difficulties can be more common. One of his first symptoms was choking, then food up his nose and a series of bouts with aspiration pneumonia.

Eating just didn’t satisfy, and eventually became a real threat. We thickened and modified, then resorted to a food tube. It was bad for a long time. But as we began to understand, and as the slow-acting immunosuppressants began to work, both health and attitude improved.

That made the setbacks that have occurred in the past few months much harder to take. If you hit a road bump at 30, it is a lot easier for someone to convince you that it’s just a speed bump in the road. If you are 60 or 70, the road ahead is a lot more foggy.

MG is stubborn

When hubby fell and struggled to get around, all the improvement we had seen over the past 2 years seemed to evaporate before our eyes. Instead of our routine of light activity (outdoor concerts, drives to parks, walks with pets) hubby was back to his big chair and hour after hour of reruns laced with Tylenol.

There’s a rule that when you don’t use a muscle it takes 3 times as long to get it going again. With myasthenia gravis, maybe more!

Today most of us are spoiled. We expect medicine to work — quickly. You get a shot in the tush for an infection and within hours your temperature breaks. You break a leg and there’s a schedule on the calendar of what you can resume doing when. Unfortunately, our immune systems aren’t good at following calendars. And myasthenia gravis is especially stubborn.

Chart your symptoms

So s#$% happens. Your journey to wellness gets diverted. It might seem to be a downer, but don't slow down. As you begin your treatments create a careful log of your symptoms (not that print-out the doctor gives you.)

Take some pictures of that droopy eye - morning and evening. Add double vision to the log if it happens. You could even do a drawing blog of what the world looks like each afternoon. Make a tape of yourself telling your story morning and night. Take note of the voice quality. Keep Track of how long you can walk each day (without getting flat out.)

Everyone is different, so the sorts of things you log will be up to you. But this kind of logging has 4 positive effects.

  1. Things often seem a lot worse from the inside. A log might force you to write down what you can do, rather than what you can’t.
  2. Specialists’ visits are hard to get! Having a log makes your point a lot easier than rambling.
  3. Share it with a significant other. It’s likely they will be more positive about your progress than you are.
  4. Time goes on; the log remains. This might not be your only setback. Having concrete evidence that this is only a speed bump is important.

One of my favorite books for young people is called I’m In Charge of Celebrations. It is really about how to focus on the good, not the setbacks. In our house we are determined to be in charge of our own celebrations. It is never too late.

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