Thursday, September 26, 2013

Can you die from myasthenia gravis? Part 3

In Part 1 and Part 2, I discussed two ways myasthenia gravis can prove fatal. Here is the third: falls.

Myasthenia gravis makes walking unsteady. Ha! Unsteady. The truth is, MG can turn you into a card carrying member of the Monty Python Ministry of Silly Walks. I have several silly walks, depending which muscle group is offline.

If MG played fair, it would weaken muscles symmetrically, which it doesn't. It would weaken the same muscle groups every day so you could adapt, which it doesn't. MG is not fair.

The more you move, the weaker you get. This has got to be the most frustrating aspect of life with MG. People move all the time. We blink. We use spoons. We reach for things and pick them up. Before I had MG I could move without thinking about it. Now, I think things through.

The way MG weakens muscles makes falling particularly dangerous. MG tricks you into thinking you're fine. Walking begins like it always does, but then something shifts. A muscle in your trunk goes offline and you lose your balance. Or, your left thigh muscle is no longer operating within design specifications and has switched off. Your entire center of gravity is thrown off, and down you go.

This can happen without warning. I used to fall a lot. Then I got some help.

Honey chose to be a service dog. When she was about eight months old, we went for a walk. Suddenly Honey started pulling, dragging me toward a park bench. I sat down, and she sat at my feet. Not wanting to sit down, I got back up. Honey jumped up and pushed me back down on the bench. She did this about four times before I decided to pay attention to how I was feeling. My leg muscles felt like rubber bands. Honey knew my muscles were weak before I did.

She learned to give me a specific look that says, "Mom, sit down." I learned that she was right.  Honey taught me how to pay attention to little warning signs a fall is coming. When I start to stumble, it's time to sit down. When I feel unsteady, I need to rest. Honey is retired now. She spends her time hanging out with me and being my friend. She's 11 now and has earned her rest, but I can't thank her enough for what she taught me about falls.

Cuing into your own body is key here. What do weakening leg muscles feel like? What are the early warning signals? No one else can tell you what your MG feels like. Your own wisdom will protect you from falls, and so can tools like canes, crutches, walkers and powerchairs. I have all of them and I use all of them, depending on how my legs are working on a given day.

The hardest part about using tools is mental. Using a tool identifies you as "disabled." That outward sign of an inner reality may be hard to take. Questions from people, "Why are you using that? You don't really need that thing, do you? I saw you walking yesterday and you were doing fine." All of this sucks. MG is rare. Almost no one has it and most people have never heard of it. What do you mean the more you move the weaker you get? That's just crazy. You know what you need? A good exercise program. My Aunt Sadie had something like that, but she took these herbs...


Sometimes I wish I had a big, flashing "Stop Talking. You're Not Helping!" sign on my forehead. Click a button and that sucker would light up. Most people don't know what you're going through, and they won't get it. What I don't want for you, or anyone else with a new physical disability, is to decide the words from strangers matter more than your own safety. If you need a tool to prevent falls, use one. Fear of what other people will think, or fear that you're making a big deal out of nothing, and refusing to use tools, is one way myasthenia gravis can kill you.

Pay attention on stairs, wet surfaces, transitions from rug to hard floor, ladders and bathtubs. I had to stop taking baths after I realized I can't get out of a bathtub safely. I need to use my arms to lift myself up. Only, being me I forgot this. I knocked my head hard enough to see stars when I slipped.

Be careful when you bend over to pick something up. Ask for help when you need it. Or, maybe you can find a furry friend to be by your side. Service dogs can pick up a paperclip and hand it to you. A service dog can stop you from falling and might even save your life. For more information about service dogs, click here.

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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