Hi,musicsmiles said:My husband was just diagnoised with ALS. He went to a ALS Clinic and was run through 5 hours of testing. He has had outburst of uncontrollable laugher and crying. He has a very hard time swallowing liquids, even his own medicine for his emotions (which is a liquid.) We don't know what to do about that because they claim its a very new medicine and it doesn't come in pill form. It smells like something you would rub on sore muscles. My question is, he is showing no signs of muscle weakness in his arms or legs, his problems are all in his tongue, swallowing and speech. He has some twitching in the top part of his arms and chest, has anyone here heard of ALS controlling the body in this manner. I only read about it affecting the bottom half of the body first? Am I still not believing this is happening or is it just affecting my husband in a different way? Please respond!
Unfortunately, no one will be able to tell you how long it will be. Or even, with certainty, that it actually will affect his limbs. It may never go that far. From the neuros that I've met so far, they will only give you some probability for a progression rate depending upon what they have seen in him so far. And some people defy those predictions--either going faster or slower. In my opinion, the best way to keep some sanity around this is to assume the worst is coming and begin to prepare for it. Then take life one day at a time, being thankful for each one of those days you've been gifted with. Get all of the grief out of the way now and just "go forward". We have to work with what we are handed.musicsmiles said:Thank you everyone for putting my mind at ease and helping me get through some of the unanswered questions. I definitely feel that I'm not alone now! You sound like some great and generous people. I'm glad I found this site. My husband goes back to the clinic on the 15th of this month, I am going with him of course and we have more questions for the staff. Please, if anyone has any ideas of how long the bulbar onset last before the muscles in his arms and legs become paralyzed! This really frightens me, especially with him being a construction worker and all! He feels he has to keep up his image.
Thank you so much if you can be of any help !
Musicsmiles (it really does! its part of my therepy)