The progression is different for everyone so it's hard to give universal advice but I'll try. My dad is progressing quick, it took almost 2 years to get diagnosed. He was diagnosed in May and I'll be lucky if he is still around for Christmas. It's not that fast for many people (lots of examples of people having it for 10+ years) so that certainly impacts my experience.
Make every day count - you don't how how many are left.
If he isn't going to a multidisciplinary ALS clinic I would look into it. Instead of having to go to 5+ individual Dr. appts my dad goes to one big one and sees the neurologist, occupational therapy, physical therapy, respiratory therapist, nutritionist, etc. all in one appointment and they all calibrate together on treatment. It's a long day but far better than managing individual appointments.
It's ok and often better to start a treatment sooner than you might think is necessary. My dad is on an iVAPS (a non-invasive ventilator) to help him breath and that has greatly increased his quality of life and I wish he could have started it sooner. Some PALs (People with ALS) avoid stuff like that because they are embarrassed, see it as a weakness, etc. but then realize how helpful it can be. The biggest example of that is probably a feeding tube. Most PALs at some point have to decide if they want to have a feeding tube placed. The tricky part is that often times by the time they actually need the tube their respiratory function is too low to actually undergo the procedure. The tube can be placed and not used for years, but often time people wait at the time they are able to eat without issue. Unfortunately my dad was unable to get the tube (due to late diagnosis and fast progression ) and eating is one of his biggest struggles (they want him to have 2500-3000 calories a day but he has virtually zero appetite so a meal for him is like half a sandwich). This applies for almost every step of the journey - voice banking, mobility assistance/wheelchair, and even hospice. Most people think of hospice as being for someone who only has a few days left but it is available to anyone with a 6-month or less prognosis and they provide a large amount of support, this is a decision we will likely be making soon.
There are way more support groups/organizations than I would have ever guessed. I'm generally not one to ask for help but these organizations have helped us quite a bit. Team Gleason provided a my dad a portable electric wheelchair basically no questions asked and it was only about a week from applying and having it sitting on his door step. There are local charities near me that help provide everything from adaptive eating utensils all the way up to giving families wheelchair vans. There is also a lot of useful online content - podcast, content creators (@limpbroozkit on IG for example), etc. that can be very helpful.
I'm happy to answer any other questions, publicly on here or email in my profile.
