View Single Post
Old 02-17-2014, 04:47 AM
anon6618
Guest
 
Posts: n/a
anon6618
Guest
 
Posts: n/a
Default

Hi!
Since my MG is very bulbar, Ill answer your questions.

My MG even started with the bulbar problems, having swallowing difficulties was my only symptom for a few months.

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?
Yes, I had to use medicinal liquid food for over a year continuously. It is a very limiting problem, because not being able to chew, laugh, talk or swallow is awful. I have had a period where I could not talk, not even make the slightest sound. I felt terribly locked up and I felt like going crazy.
I still have many problems in that area. My food has to be: not to hot, not to cold, not to hard, not to soft, and one thing is the most important: never, ever eat stuff with both hard and soft / liquid bits in it. Like cornflakes or egg salad. It comes out of my nose, and that aint fun.

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?
Yes. It did not help, they gave me exercises. I have tried 2 different ones, because I do not give up easily.

How has your ability to work been affected by your MG? (Specifically interested in or swallowing issues but all info is appreciated)
It has affected it greatly, MG severly disabled me. I cannot work, which I still have problems with every day: it feels like failure and makes me sad.
But this is because it is generalized, I have breathing and energy issues to for example.

How has your social life been affected? (Same as above)
Yes, a whole lot. I cannot do much, and anything outside my house is like an adventure. The bulbar problems affect this to, because talking and laughing are very important for your social life.
It has greatly affected my love life too.
And it makes you feel unsure, and ugly, to have no control over your expression or your mouth. "Let's go out for a drink" might seem like a sweet little question, but it makes me nervous.
  Reply With QuoteReply With Quote
"Thanks for this!" says:
Panorama (02-17-2014)