Rather then trying to explain the disease verbally and having to tell the story over and over I started sending out regular emails with updates on my progress and information about the disease. Try not to overhwhelm them with too much info or they won't read it.

I hope yours stays ocular, I really do. I started that way but now I am seeign others symptoms. Started with right eye, mainly right gaze double vision. Then droopy eye, sore, blurry, etc. Now I have in left eye and right eye seems to be better. I have also had some chewing strength issues. Jaw gets tired very quickly.....

Pay close attention and advise your doc when something comes up.