MG ice analogy

Today, when I was getting water from the dispenser on the fridge, it made me think about something: Myasthenia Gravis. At first, that might seem quite odd, but what I thought was the ice maker in this fridge is the perfect analogy to describe what it’s like to have MG.

If you have an ice maker in your fridge/freezer, you know that as long as it is working right, you will have plenty of ice to use how you please. On a hot summer day, you keep refilling that glass of ice water. No big deal.

But what if the ice maker breaks? What if something is preventing that ice from being dispensed to you? What if you can’t choose how much ice you get? What if you never know how much you will have or how long it will last you? All you know is that the ice maker is broken and thus you have to conserve the ice you have to last you through that hot summer day. When you are in the heat, that ice melts faster. You have to pick and choose how to use it because when it’s gone, you may not get anymore until tomorrow, or maybe even the day after that.

That broken ice maker is like the auto-immune attack on our neuro muscular junction. The ice is like the acetylcholine going from our nerve to our muscle to make the muscle work. Some days we will have enough ice, other days we won’t. We don’t know exactly how much ice we will get, so we have to conserve what we have. We have to pick and choose what to use our ice for and designate only a certain amount to each glass. We have to be careful not to let it run out.

What does that mean in the literal sense? We have to plan our days and choose which if any activities we will participate in. Each activity including cooking, driving or merely talking on the phone all take a certain amount of ice. We have to decide what is most important and only do those things, even if we are still functioning ok or “look fine.” We must rest both before and after any activity to prevent a trip to the hospital. We must avoid the heat.

Now every time I refill my water bottle and dispense that ice, I will probably think of MG, and I hope you do too. I hope it serves a reminder of the need to conserve our use of muscle for the most important things in life. When our ice runs out is when we can have a crisis with the need for a ventilator, plasmapheresis or worse.  This is why those of us who have MG so strongly desire awareness and ultimately the hope for a cure, someone to fix our broken ice maker even though it looks “just fine.”