Hi Tampster,
I'm so sorry you're in this predictament and unfortunately I remember thinking the same thing. A year ago. We had just come out of the hospital for the flu and pneumonia. At the time my husband (Rick) had been to emergency a few times due to falls and was no longer able to walk, albeit he was eating, swallowing and talking well. In May of 2014 we had the scare of our lives. On what seemed to be a normal day, he ended up having respiratory and heart failure. Thank God for CPR and the medical professionals ability to resusciate him he lived through it. After a month in ICU, leaving the hospital with a trachetomy and a month in rehab we ended 2014 on a much better note than we started it. That said, he is in his 5th year. We were told most ALS patients live 2 to 5 years and I will say, my aunt (married to my mom's brother) last 2 yrs once diagnosed, my husband's best friend, who grew up across the street three/four houses down, same age, same environment, same hobbies, etc., got diagnosed the same time my husband did and passed a few months ago.
All that being said, we concur with everyone else in that each ALS patient progesses differently so there is no telling on the "how long" question. I will say my husband's doctor, Dr. Stanley Appel out of Houston Methodist in Houston, TX told my husband that he believed a positive fighting attitude and mindset of the ALS patient seems to have some impact on the person's time. Keeping that faith and fighting spirit goes a long way and I will testify to that as I've witnessed my husband at his worst and at his best. One day at a time that's how we cope with good days and bad days, but with the faith that regardless of the bad days (because when they're bad they're bad) they too will pass.