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


advertisement
Reply
 
Thread Tools Display Modes
Old 09-10-2012, 09:22 AM #11
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
Originally Posted by hajile99 View Post
I figured...but I'm still going to take it at face value for now. Lol
That's fine, as long as you don't expect too much from yourself

I had times when I would dance (better than I ever did before) while lying in bed connected to a non-invasive respirator.
alice md is offline   Reply With QuoteReply With Quote

advertisement
Old 09-10-2012, 10:15 AM #12
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

If any of us need respirators, then this is the time of year to plan dances. You could dress as Darth Vader and make a huge hit.
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 09-10-2012, 09:01 PM #13
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

Ok, so when am I going to get over all the fun I had Saturday night?
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 09-11-2012, 02:16 AM #14
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Southblues,

I suggest that you document your recovery period, so that next time you know what it involves. It may still be worth the price, but you will know what it is.

A few years ago, I presented my work in a conference abroad. I felt that this was a great victory over my illness. But, then it took me about 2 months to recover from this to where I was before.

A few months ago, my abstract was accepted for another conference. After getting over the "high" of having my work recognized and acknowledged I had a serious discussion about it with my neurologist and a few colleagues and decided that I no longer need those victories and it is not worth the price. One of my colleagues was ready to present our work instead, so that I would not have to take this journey.

On the other hand, an important task I want to accomplish at work can make me crash for a few days. So, every now and then I am ready to pay the price. The same applies to family gatherings or meeting with friends.

You can gradually learn the pattern of your illness, and gradually create some order in this disorder. There will still be times in which things will get worse with no obvious reasons, or you can "get away" with overdoing it, but those will happen less often. You can't control your illness, but don't let it control you either.

Hope you feel better soon,

alice
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dewcole (09-22-2012), southblues (09-11-2012), StephC (09-16-2012)
Old 09-13-2012, 05:59 PM #15
PhotoBug50's Avatar
PhotoBug50 PhotoBug50 is offline
Junior Member
 
Join Date: Aug 2012
Location: Pleasanton California
Posts: 19
10 yr Member
PhotoBug50 PhotoBug50 is offline
Junior Member
PhotoBug50's Avatar
 
Join Date: Aug 2012
Location: Pleasanton California
Posts: 19
10 yr Member
Default

What a victory for you! You deserve a trophy and a standing ovation for your courage as well as for your talent. - Mark
PhotoBug50 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
southblues (09-13-2012)
Old 11-04-2012, 03:06 AM #16
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
10 yr Member
Default

Got a lot on my plate right now, so as I donīt forget - sending you a little good luck charm right now for the NEW concert you have planned for November, Celeste

http://www.worldisround.com/articles...4/photo20.html
Anacrusis is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
southblues (11-04-2012), StephC (11-04-2012)
Old 11-04-2012, 08:51 AM #17
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

That should bring some good luck!!
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Assisted suicide bill clears hurdle BobbyB ALS 1 03-28-2007 07:12 PM


All times are GMT -5. The time now is 04:35 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.