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Old 09-09-2009, 06:53 PM
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Nicknerd Nicknerd is offline
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Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Nicknerd Nicknerd is offline
Member
Nicknerd's Avatar
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Default hey Allen

Don't ever minimize what you're going through! You're going through a lot! It's so hard to lose the ability to do the things that we love...I know just how you feel...I've been singing, playing guitar/piano/drums, painting and also doing sculpting since I was very young- all things that I treasured and slowly lost the ability to do (with ease)...I can still do them (well, not sing so much...but sometimes I can), but it's more difficult and I get discouraged because it puts so much strain on my back, and my hands don't want to comply...

All of these activities give us joy, and it's no easy task to accept when you know just how to do something, and you know that you could really 'rock' it lol, but your darn muscles get so tired and you gotta stop...This can be a real loss, I know...You deserve to have your time to feel upset...I hope that in your earlier post, when I told you that, 'it could be worse,' that it didn't make you feel like I was minimizing your experience, because it's a big deal to have this illness and you're suffering from it! I think that I just said that because it's something that people say, but I realize that I don't like it when people say it to me, so I'm going to take it right back from you! I didn't mean to say that what you're going through is small, what we're all going through is small...It was a silly thing to say...You vent away, Allen!

Anyway, I think that it's awesome that you're coming to terms with it...I've been trying too, but I find myself looking for a cure/alternative everyday...It sure does suck to have this MG, but I have hope that we'll all be cured one day...I've been reading about this treatment called, 'monarsen.' It's still in trials but it looks very promising...

Maybe for the arm weakness, you could try resting them on a really high table while you're doing your wood-working...I find that when I paint, it's easier to get a bunch of books and put them on my lap and put the paper on the books...It's better for my neck, chest and arms...Sometimes I put a bunch of pillows under my arm to lessen the strain...That helps a lot too...Another thing that might help, and I've never tried it because I don't really have issues with my vision/eyelids, is maybe taping your eyelids open when you're doing activities in private...There's special tape that you can buy...It would probably be really annoying, but maybe it'll help enough with the ptosis so that you can get woodworking done...Also, could lamps help with the lighting issues at home? I'm sensitive to light too...I find that lamps provide an ideal amount...

Anyway, it's good that you're sharing your coping strategies with us...I like hearing how other people make things easier on their muscles 'cause it gives me ideas...

Nicky
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