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Old 12-16-2014, 08:47 PM
richimahan richimahan is offline
Junior Member
 
Join Date: Aug 2014
Location: Lexington KY USA
Posts: 8
10 yr Member
richimahan richimahan is offline
Junior Member
 
Join Date: Aug 2014
Location: Lexington KY USA
Posts: 8
10 yr Member
Red face Appreciate you

Your story is mine, ours, and I appreciate your sharing. A professional in the performing arts and sciences (My career has been blessed, fruitful and rewarding, as I found a way to combine my music and the sciences.), being diagnosed with MG after most-disturbing symptoms, and now resultant treatments, medical with specialists, and therapists (mostly speech/swallow etc. therapists) for the past two years. Only this year, in July 2014, did I accept the disability and retirement. 20 years too early. Some days are life as a ragdoll, and every 4 days or so, I have maybe one good hour. I no longer frustratingly push-it, and am settling into new routines. No longer at my baby grand or prepping for a biology or medical lecture, or travelling everywhere, some days I accomplish a lot just because I had no trouble breathing that day, or could drive that day (I have always possessed new cars etc. and a mustang collection, but these days I am happy just to not have to call my driver haha, and be able to drive myself, even if it is only a block). The voice thing, well, as a vocalist and lecturer, I hope you know I surely truly empathize because your story is mine, on nearly every level. My advice : Stay informed, because insight into the condition allows more self-empowerment. Make your needs known, to your docs, to the therapists, to the nutritionists, to your shoppers, friends, family, drivers etc. Because MG is different for each person. My caregivers may one day have to simply cook prep and chop my foods, and then the next visit have to allow me to stay down all day and try to communicate with me to obtain what's up. God bless, and stay on, this is a GREAT resource and support group, with very fine, wise people on it.
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"Thanks for this!" says:
SoCalGirl42 (12-17-2014)