ALS with each loss stage we had a chance to adapt to it. But then get hit by the next loss and adapt again. If you want to chat on it at some point would be up for catching up, discussing it.

This has me thinking about this again. It was so dramatically different than my uncle this past year diagnosed with cancer and passed 2 weeks later. One week talking normally, next week would start a sentence and trail off into nonsense, to the last 24-36 hours able to make noises but barely words.

Your question is so interesting focused on the communication part. There were so many other unique things with ALS. So frustrating to see someone who has all the intelligence and clarity in their head still, but slowly loosing the ability to communicate those thoughts physically.

Having routine became so important as it helped reduce the things that might require discussion. One beautiful thing was my daughter learned to not need an invitation to climb up on his lap and give grandpa a hug.

And then there came a point where movement is so limited it’s harder to notice their frustration because they can’t make those subtle movements or expressions as easily.

It was slow and living with constant sense of loss after loss. I recall as breathing got harder for my step father he used fewer words. And there were times you would see he might get frustrated if you interpreted something incorrectly, and just have to stop and slow down.