Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 08-02-2013, 01:48 PM #1
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Default On a lighter note

This week the MG (if that is what it is, I've been told by multiple doctors it almost certainly is, but awaiting clinical testing) has been kicking my butt. I work on a big campus, and what used to take me a minute or two to walk, now takes at least fifteen minutes of walking like a duck. Anyone thought of hiring a tuba player to walk along behind them playing "de dump, de dump ..."? Perhaps the undergrads will get a kick out if when they return at the end of August .

Sorry if humor is too silly, trying to figure out some ways to stay sane while I wait to see the specialists.

-Willie
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Old 08-02-2013, 02:55 PM #2
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Ha! Once, in the early stages of my illness (I'm actually better now!) I was having trouble with the muscles in my sides. I was swaying back and forth from the waist as I walked. So I thought maybe I could figure out a way to stay more stable, and I took the kids for a walk down the street to practice. I tried swaying my hips from side to side so that my upper body would stay vertical. My kids imitated me, and off we went. Some fellow in a pick-up truck drove up behind us and shouted "Nice strut!" out the window. So I called it the Myasthenia Strut. It didn't really work, but it was worth a try.

Abby
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Old 08-02-2013, 05:05 PM #3
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I work on a large campus too. It is amazing, how many of us are in the education field.

I asked my doctor and applied for the handicap parking placard and got it. I have a spot right outside my building now and I am so grateful

kathie
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Old 08-02-2013, 06:16 PM #4
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Abby - a MG strut sounds much sexier than the "march of the elephants" that I was envisioning. Glad to see that pick-up drivers are still keeping it classy

Katie- I'm tempted by a temporary disability tag, but worry that it will allow my hips to atrophy further if I allow myself to not use them. I think my pride might get in the way as well, I'm kind of stubborn and maybe a little stupid at times. Guess I will see how things progress. Falling over while trying to get to work probably won't impress anyone.
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Old 08-02-2013, 10:13 PM #5
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I have a disability tag. When I teach on our bigger campus, I use it to avoid having to walk 1/2 mile to class. Lately I have been on our small campus. There is always parking right near my office so I don't bother to use it. It is such a nice little college campus.
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