Rick and I have our faith, our love of playing very competitive card games with friends and family, and being involved with the community and volunteering and so on. He is the PALS, and he keeps doing all the things that fulfill him...like being treasurer of the Elks lodge and preparing tax returns. ALS slows him, but he doesn't have to hurry.
Personally at home together we talk about all the years we grew up in the same town, and the people we knew and still see. We read together and watch tv together and discuss current events. We take care of each other and build each other up, and help each other with the chores. We talk about life and death and this dreaded disease. We talk about what could happen along the way and how we'll deal with it.
We show each other great affection. We embrace a lot and hold hands like teenagers. We try to grant each and every wish to each other if it is possible. We make the most of every day. We argue sometimes, or scold each other, but don't ever let it become resentful. We are still newly married and are intimate often at 60 and 61
When he becomes more immobile, I plan to bring things to where he is, and include him in my sights so he can join in my life still. If he can't speak or move, we will have onesided conversations and I will be in such tune to him I will know what he would say without saying anything.
Everybody should do these things to strengthen their lives whether or not there is ALS. Yes you have to heed the symptoms and limitations... the imminent outcome too, but you have to prevent ALS from being in the forefront. Keep it in your peripheral vision.
