Monday, June 11, 2012

June Is Myasthenia Gravis Awareness Month


June is Myasthenia Gravis Awareness Month. I bet you didn't know that. Don't feel bad. I didn't know it either and I've had MG for 15 years. Since this is awareness month, let me give you a quick run down of the symptoms of MG.
  • drooping eyelids
  • blurred or double vision
  • slurred speech
  • difficulty chewing and swallowing
  • weakness in the arms and legs
  • chronic muscle fatigue
  • difficulty breathing
All of these symptoms come and go. They are usually worse in the evening. Not everyone with MG has all of these symptoms. Severity varies.

OK, that's the official list. Now, let me give you the Marie Smith's Unofficial Guide to Myasthenia Gravis.

  • Drooping Eyelids. Drooping Eyelids will cause you to tilt your head at unnatural angles while you drive 70 miles an hour on the freeway. To solve this take one hand off the steering wheel and use your index finger and thumb to prop open your eyelid. Much better. Now that you can see, you can now drive 80.
  • Blurred or Double Vision. Blurred and or double vision is solved using the pirate method. Keep one eye closed behind an eye patch while propping the other eye lid open with your index finger and thumb. Continue driving down the freeway. When you switch the eye patch to the other eye, use your thigh to steer. Continue driving 80 miles an hour. 
  • Slurred speech. Slurred speech is a misnomer. Its more like a stutter on certain letters. S is particularly hard to s-s-say. Singing along with the iPod will tire out the muscles inside your mouth. You will sound like you have marbles in your mouth. Don't worry. You are not on American Idol. You can keep singing anyway. You're in your car on the freeway so go ahead and s-s-s-sing.
  • Difficulty chewing and swallowing. Again a misnomer. It's not an instant difficulty. It's more subtle. You pull into a truck stop and order chicken fried steak, because if you wanted something else you wouldn't be eating at a truck stop. You start eating and everything is just fine. Then about halfway through your meal you stop chewing. The food is still in your mouth, but you are no longer able to chew. It's weird. You think about chewing and resume chewing for a few more bites. This cycle of chew, pause, chew continues. You try to swallow and can't coordinate getting your food to the back of your mouth. You're stuck with a mouth full of food and no way to swallow. You have no choice but to go into the bathroom and spit your food in the toilet. You clear your mouth with your fingers and remember that people with myasthenia gravis live normal lives. Normal... on Saturn. You're done eating. You weren't still hungry were you?
  • Weakness in arms and legs. You leave the truck stop and reach for the heavy door. You want to pull it, but you just can't seem to yank it. Frustrated you give the door a good hard pull. Your stance was so awkward that you are now holding the door open with no way of going through. At this very moment a tour bus pulls up with 93 members of the Ulysses S Grant High School Marching Band. And they all think you are holding the door open for them. Your elbow is shaking and so is your shoulder. You finally make it back to your car and don't have the strength to open the car door. You wait for your arm to reboot and open the door. You get your right foot into the car just fine but your left leg has decided it prefers the parking lot. It has no intention of getting into the car. You grab your jeans with your hands and drag your left leg into the car.
  • Chronic Muscle Fatigue. You continue driving down the road and all is well. Until you end up in a construction zone full of orange cones and flashing lights. Traffic is moving one mile an hour. Inch by inch you drive along. You notice your right foot is having trouble getting off the brake. So, you switch feet. Driving with the wrong foot is no problem. This strange contortion is part of your normal life. You get through traffic and your left foot is too tired to drive any more. Your right foot, which had a nice rest is ready to go. You press the pedal down and go 80. OK, 93 because that construction put you behind schedule.
  • Difficulty Breathing. Difficulty breathing is no laughing matter. This is how myasthenia gravis kills people. In order to breathe your brain sends a signal through your nervous system to the muscles around your lungs. This happens 23,000 a day. What would happen if your brain told your muscles to breathe but your muscles didn't get the message? You would stop breathing and die in minutes. Myasthenia gravis can shut down breathing muscles with little warning. Respiratory failure, choking, and falls are the leading causes of death in myasthenia gravis.

I live with MG all day every day. When my body lurches, I laugh. When a fork is too heavy to hold, I laugh. When I choke on food and cough until I vomit like I did on Thursday, I don't laugh. I pause and remember I am mortal. I remember how close I am to the edge of the cliff. I pause for a long time. And then I return to the dance. MG is serious. That does not mean I have to be. All I have to do is be... me.


7 comments:

  1. Glad you stopped by, Chuck. MG is weird and challenging but we don't face it alone. Good to meet you.

    ReplyDelete
  2. After 7 years of Tests and Misdiagnosis I was FINALLY Diagnosed with MG 4 years ago. I have all of the symtoms, to one extreme or another, they come and go, but all of my muscles seem to be sore all the time anymore. I really enjoyed reading your article...it gave me a chance to laugh, relate, and remember that I am not the only one who has MG. Thank You! Rob Webb

    ReplyDelete
  3. I enjoyed reading your post it made me laugh, it is so real and hard 4 me 2 exsplain but u hit it right on the dot, i have been diagnosed for one year, but i thank god that 1 trip to the er and 1 the doc and he new just what it was

    ReplyDelete
  4. I have MG and am just coming out of my second crisis. I did not accept the seriousness of it after the first one, so had another far more serious crisis 6 weeks ago. I am struggling so hard with this cruel illness, I feel like an alien has taken over my body. I try to set my head to a good mindset, that I will learn to live with this, go into remission, then I choke, cant pick up a pen, you know what I mean

    ReplyDelete
  5. I see your "normal life" is a lot like mine. I guess they are right when they say we can live normal lives. They just forgot the rest of the sentance. It really goes: Live normal lives for MGers. :)
    To Anonymous April 23, 2013 at 3:32 PM. Please accept the seriousness of ANY crisis. I didn't and I am just lucky to be here to warn you.

    ReplyDelete
  6. Ur story was good irelated to it ihave MG too iam 17yrs old mg has ruined my life icant lie. iwalk for a few minutes iget tired ihave to rest were ever iam if i go to a mall ihave to.rent a wheel chair that makes.me feel bad . Idont go with my friends no were cause iam inborest cause iwill get weak infort of them. If i.drive iget weak. If.italk for a hr iwill get tired . When ieat diner my hands get very weak that icant even pour me soda iam inboerest to tell ppl my problems

    ReplyDelete

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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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