June is Myasthenia Gravis Awareness Month, and Jan Lo Vecchio hopes that letting people know about the autoimmune disease will prompt some to check it out if they notice telltale symptoms. About 70,000 Americans have been diagnosed with MG, but it's still a "relatively unknown" disease, she said--among not only the general population, but doctors as well. Experts diagnosed Lo Vecchio with MG in 1996; now, in addition to speaking out about it, she and her husband run a support group. If you're interested in attending one of their upcoming meetings, give Lo Vecchio a call at 889-6910.

Many of our readers probably haven't heard of myasthenia gravis. Can you tell me about it?

When you make your muscles work, the nerve signals travel down from your brain to your muscles. There's a junction between the nerves and the muscles. It's an autoimmune disease--autoimmune diseases are where your body fights its own immune system. ... Your body produces these antibodies, and they block the nerve getting through to the muscle junction to make your muscles work. That's a very, very, very simplified version of it; that's what's happening. Now, you're familiar probably with Duchenne muscular dystrophy in small children that you always see at the MDA telethons and Lou Gehrig's disease.


OK. Those are neuromuscular diseases where the muscles deteriorate, deteriorate and deteriorate until they die. This is a disease where the muscle fluctuates constantly.


Fluctuates, depending on how well those nerve signals are working. The medicines you take help undo that, but over time, you do develop permanent damage there. It's not a curable disease, but they do have treatment for it. That's the good part about it. ... Sometimes your muscles are very good--never 100 percent, but maybe 80 percent or so. Sometimes it's like zero. Sometimes it's like half. So, like, I'm tired now. Between dashing here and dashing there, I'm tired. Every day, you get up, and think of a piggy bank; I have a jarful of pennies, which represent energy. Every day, you take out pennies to spend on the things you do. ... It takes x amount of energy to dress, x amount to comb your hair, to do your teeth, to cook, to do a little bit of housework, to go out and do something socially. So you've got to decide: Am I saving all my pennies for housework, or is this a day when I think I can go out? ... That's why most people who have this disease do not work, because their muscles never stabilize.

So the main symptom is tiredness?

No, that's not the main symptom. The disease affects the voluntary muscles, so that's the good part; it doesn't affect your heart, for example. It affects your eyes. People with this disease have double vision. When they're tired, some people can't open their eyelids. It affects your facial muscles--some people cannot smile. It affects your throat muscles; you have difficulty chewing, swallowing and breathing, because it's affecting your diaphragm, which helps control your lung muscles. It affects your large hip muscles, so then you're talking about the ability to walk and to stand. Standing in long lines is hard for people. It affects, of course, your arms--so lifting, carrying, all of those muscles. That's how it affects you. ... If you're really, really having a rough time, the only thing you can do is sit in a chair and watch TV.

I see.

(One of the three things that) makes this disease worse is repetitious motion. (The other two are stress and infections.) You're supposed to avoid all forms of repetition. Now think about that: To paraphrase Forrest Gump, "Life is repetitious motion." You get up in the morning and brush your teeth--that's repetitious motion. You chop food for a salad--that's repetitious motion.


Typing, yes--that's repetitious motion. Reading a book is repetitious motion on your eyes, you know? If you're trying to do any kind of computer game at an arcade, that will really wear you out, because that's highly repetitious motion. Playing the piano? Well, a lot of the piano (playing) is nothing but repetitious motion--the trills in Mozart, especially. I'm a piano player. Haydn, Scott Joplin.

I love The Entertainer (written by Joplin).

I can play the piano, but I have to be sure I vary the music, and I have to do it for a short period of time. I just totally flat don't play Mozart or Haydn anymore. I go for the pieces where it doesn't run up and down the keyboard.

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