I also have teeth chatter, but not only in morning. It happens sometimes when I go to swallow. I also am not looking forward to winter, as when I get really cold my jaws clench and I have a hard time even opening my mouth. Don't know if anyone else has experienced this.
That was a good question Ron. I learned something new from it. I think people with bulbar are a little less likely to tell about their symptoms. Either that or we have people on here with it and didn't have any before.
I think a large part of the problem with having Bulbar ALS, at least one of the problems I have had is adjusting to the lack of voice. It is after all one of the basic human communication mediums and loosing it is a real confidence denter.
Yes, I agree that loss of voice is hugh. But, I find that not being able to eat regular food has as much an impact on every day life. I cannot eat in public, and it so limits your social life. Everything we do seems to revolve around eating. Snowbird, in a very recent post, talked about the importance of being out in the community, and going to events, etc. I find this is so hard to do when you cannot eat. We used to go out for dinner every Friday night, now we cannot do that. "Going out for coffee" is no longer an option. I just find that socially, the eating part is a pain.
Al, I agree that there are more of us with Bulbar posting now. When I first started, there did not seem to be many with symptoms like mine, but there are more now.
Granny, I agree with you completely. Not being able to eat changes your social life. Thanksgiving just isn't the same. Not being able to eat or talk really makes you a bit of an outcast. No more going out for dinner, or Sunday morning breakfast or even popcorn at the theater. The feeding tube is great. I'm able to maintain a good weight, but that means didly-squat when my wife is roasting a chicken! When I was first diagnosed 5 years ago I was thankful that my legs seemed uneffected, I would trade in a heartbeat!
A question for Granny and Ron, do either of you have problems with your neck, as in holding your head up. This has been a real "pain in the neck" for me as the neck braces I have tried are just as uncomfortable as without.
Hey folks..isn't this fun!
hi, i have bulbar also. i have jaw chatter and miss eating. however i would not subject people to my drooling, coughing,choking. only my husband gets that privelege. i gross myself out. wait till your teeth clench down on your tongue and cant release it. ouch i thought i bit my tongue off. dar in ohio,diagnosed 1-04
Les and Granny. I am still able to eat most things and I go out for supper and lunch with my wife, son and his girl friend. I was only diagnosed in August 2005 so maybe I have all this to look forward to. As for neck problems again this is maybe something for down the road. It is good to at last have some meaningful dialog with people on this forum who have the same form of ALS as I do.
Les, I don't have any neck problems yet. So can't help there. My only symptoms so far are in my throat/tongue area.
Ron, I agree that it is good to talk with people who have the same problems. Not "misery loves company", but something like "two heads are better than one" - we can help each other with things that worked/didn't work with us. You may never lose your complete ability to eat, everyone is so different, so don't think too much about what may not happen.
I get Jaw chatter only when I'm cold, once it starts i cannot stop until i warm up.
I think what you are describing is something called Jaw clonus - Rapid, rhythmical movement of the jaw upon closure, indicating weakness or fatigue, I get it only if i stick my bottom jaw out while opening and closing my mouth.