Hi Marcia - I'm a CALS. Pat, PALS in my care, had her tube placed last August. The criterion was her breathing - not her eating. Our clinic is pretty insistent that you consider it at the 50% Forced Vital Capacity Level. She was just below that. Some of our fellow patients have resisted that, and when they finally gave in, they had a harder time with the tube placement - some even exsperienced a rapid downhill change.
Pat never uses the tube now. So I clean the site and flush it every day. She used to use it in the beginning - because food just did not appeal to her. She gained back about 14 pounds and her appetite rebounded - so now it is all oral feeding. No bulbar symptoms - so feeding, chewing, swallowing are all OK.
When she was using the tube it was quite easy - we hung a bag on an IV pole and ran a couple cans of formula in at a time over about 2 hours, then the same in the evening. She did her computer, slept, watched TV, whatever. Not hard to do for the CALS at all.
I just had to make sure I kept the bag clean, and flushed her tube as suggested - No problem at all.
In our support group the people who use the tube are happy they did it. They especially talk about the benefit they feel from being properly hydrated. They all look much pinker, most have gained some weight, all talk about more energy. Most can eat some things. Now they eat for pleasure/taste and use the tube for nutrition.
My advice - get it early rather than late. Losing weight results in muscle loss that can not be regained. Better to not lose it.
The procedure is much better tolerated early rather than late - we have some members in our group who did not require even aspirin. On the other hand, Pat was quite uncomfortable for two weeks. Don't wait.
Also - go to someone with experience in ALS - it matters what they use for sedation. Pat had to bring her bi-pap with her for the procedure. An inexperienced GI guy would not even know to tell you that - or even what to do if you showed up with it.
Summary - I think it is a no brainer - your mind is vital and you have something to live for - nutrition REALLY improves symptoms (not the muscle weakness) such as fatigue, loss of energy, alertness, etc. Won't stop the disease - but it is a fairly minor procedure that results in huge improvements in quality of life.
Good luck! Beth