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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

No one can say how fast the disease will progress. It may depend on what area he is affected by now as to when he may lose the use of his legs. My husband was dx in 3-01 with bulbar. His first symptom was in ll-00. He lost the use of his voice and throat muscles first, then the arms and legs at the same time all with in 18 months. He wasnt able to eat for over 6 months before he past'd in Feb of this year. He was only 44. Take the trip now with your husband and children and take even more if you can afford to. You will not be able to get this time back. Best of luck to you.
My grandfather died last year shortly after fathers day last year. He was dx with ALS Nov. 2002. The thing about als is that there are 3 kinds of the disease, one is atrophy in the hands, another is atrophy in the legs and last is atrophy of the facial mucles which control swolling, blinking and breathing. My grandfather started with a mild case of muscle atrophy in his hands first, and after a couple months of living with it did he go a neurologist. He had a NCV/EMG done, and yes EMG can show how severe the muslce loss is and how far along it is. My grandfather shortly after being dx started having the symptoms with swallowing. So the disease took him quickly. I worked for a group of neurologist at the time of his dx. So i had some knowlege of how it progressed. No one could have ever expected it to progress as rapidly as it did. I don't mean to scare you but I am sure you would like all the information you can get to process you own feelings. My grandfather had decided after he was dx'd that he did not want any feeding tubes and was reluctant to have oxygen. I can say tward the last few months he had he basically starved to death. He lost so much weight, he died at 80 lbs. The hardest thing was he wanted to eat, but his just physically could not do it. One thing the neurologist I worked for suggested was he take otc vit Co-Enzeyme Q-10 one tablet three times a day, and also celebrex 200 mg three times a day. And I will say and so would my grandpa if he were alive, those two medicines helped him drastically in the first three months. I would bet if he had a different type of ALS those two medicines would have prologed him even more. I hope I didnt scare of offend anyone, but this is true story, and a ugly disease. My best wishes to all!!

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