Thomas933,
I'm sorry to have to welcome you here, but glad that you found us nonetheless. One thing I can say with certainty is that the knowledge that can be gained, here, will help volumes with the uncertainty that ALS brings into our lives.
My PALS, my wife Darcey, first noticed something was wrong in Nov 2012. We were trying to walk 4 blocks to a restaurant and she was finding that walk to be extremely difficult. Later that evening, she went into a public restroom and found that she was unable to get up on her own. We then knew something was wrong... but didn't know what that might be.
The next several months were filled with doctor appointments. Each was unable to pinpoint a source cause and referred to the next for more testing. Eventually, Darcey made it to the neurologist and was diagnosed with CIDP. CIDP is treatable and can be recoverable. So for the better part of a year, we put life on hold as we "waited to get better". But Darcey's ability to walk, to use her hands, to drive, to get up steps... all things continued to decline and get more difficult. In the spring of 2014, Darcey was accepted for evaluation by Johns Hopkins and was ultimately diagnosed with ALS.
By this time, Darcey was no longer driving, was spending much of her time in a power wheel chair and needed help transferring from her PWC to do toileting or to get into or out of her bed. While ALS was not the diagnosis we'd hoped for, we at least then knew what we were dealing with. We knew that ALS was terminal. We knew that she was going to continue to lose the ability to do things as time continued to pass. We knew there was no getting off of this train so we began to seek to make what was left of that life as good as we could make it. Life, which had been on hold, was rejoined. We began to again do the things we enjoyed doing... adapting along the way as ALS required.
As time continued, Darcey began to lose use of her arms and hands. In March of 2015, Darcey's then neurologist suggested that he believed that she was within 6 months of life's end. Much of that analysis was based upon her breathing history. Our 28 year old son was with us on that appointment. I can still see the smile on Darcey's face as she looked at us and then back to the doctor. She then said, "Thank you for the advance notice... but I've still got things to do... WE'VE STILL GOT THINGS TO DO. So if it is all the same to you, we're just going to keep moving forward and will continue to make adjustments if and when they become necessary." We no longer participated in the ALS Clinic after that day and did not again see that neurologist (instead picking one closer to us). He was, however, the very best of all of the specialists that we had the privilege of working with. Our ONLY complaint was that he was nearly an hour away from our home.
So... to the point of this long reply...
2015 came and passed... as did 2016... and 2017. We are now about to complete 2018 and I expect that Darcey will participate in another Christmas and New Years celebration with us. Perhaps she is still around because she chose to live the time that was left rather than to simply hang around waiting to die. Regardless, even the experts can't tell anyone, with any real certainty, the exact timeline of what tomorrow will bring.
I don't know what will work for you and your PALS, but I do know what has worked for us...
Forget about trying to put a mark on the calendar for life's end. It is not worthy of your time or attention. Instead, treat each day as another gift and seek to make the very best of it and to do those things that you can do today... as you may not be able to do them tomorrow. And for those things that can no longer be done, find other things that can be done. Even with a diagnosis of ALS there is much that can yet be done and accomplished. And most importantly, be patient with each other and talk openly about how each of you feel. No one is going to quite understand the road you will travel as well as the two of you.
I'm sorry this has become somewhat of a novel, but I hope you find something in our journey that gives you hope and purpose in yours. Although each person's journey will take different paths, there will always be much we have in common. Feel free to ask questions here. Feel free to cry or laugh here. Feel free to share that something new you learned or discovered that might help another of us here. And always know that you are not alone.
My best...
Jim