Erica,
Yes, I was a flight attendant. I enjoyed your story. Peoples Express actually merged with Continental in 86, and
almost always, if I flew with anyone, pilot or flight attendant that was "old P.E." I could expect that they would be fun loving as well as hard working. There were very few exceptions
.... I do miss flying.
I'm anxious to hear what you learn on Thursday.
Nancy,
I am sorry for your diagnosis. It is my understanding that there is specific wording used for diagnosing any form of MND. When our doctors talk to us, it sounds like they're describing their feelings, so to speak, but in actuality there is defined language for making a diagnosis. There is suspected, possible, probable, and definite. But, a definite diagnosis for bulbar palsy, could also be possible or probable MND depending on what a doctor finds on exam, and it would not move from that classification over to bulbar onset of MND, until there is clinically supported evidence of it in 2 (?) other regions. Don't remember precisely how many regions are required. ~ am I making sense?
I hope you continue to progress very slowly. I do not know what percentage of people with PBP never experience further body involvement. It sounds like you've got a good attitude, and that is bound to help you greatly. I've been told they believe the earlier a person starts on the Rilutek the more effect that person will gain from the medicine. Mayo is an excellent facility, and you should get very good advice and care from them there.
To answer your question about my progression, I had mostly only bulbar symptoms for about 18 months or so. It was my voice rather than speech to be affected first, and as amazing as it sounds, I didn't really catch how weak my swallow was until it was pointed out to me by my doctor and speech pathologists. I think it was so gradual, I just got used to it as it happened.
Good luck with your appointment that is coming up, and I look forward to seeing you on the forum.