Hello, Amazing CALS!
Reading this thread is like reading my journal - all the excruciating feelings and fears about the future. It took me 18 months to get to a point where I could live in the present and ALS wasn’t part of my every thought.
There was no magic bullet, but a combination of things helped:
1. Be grateful - Write down three things every day; it can be in short phrases or just a couple of words. Pay particular attention to what happened that day so you can be as specific as possible. The reason to write it down is so that in a week or a month you can re-read it and see how many good things are in your life. Practically everyone offers this advice - probably because it really works.
2. Educate yourself - Read up on various aspects of ALS so you will have some background knowledge. The more I learned, the less helpless and more empowered I felt. But don’t doomscroll - if what you’re reading is too upsetting, stop reading it.
3. Simplify your life - Decide what your immediate priorities are and let go of anything that doesn’t fit those priorities. Keep in mind that priorities can change over time.
4. Use all available resources - If you need something, put the word out to trusted friends, family, neighbors, co-workers, etc. You never know who might have what you’re looking for. If your ALS Association has a loan closet, that can be a big help (we got a shower chair and a Hoyer lift to use for as long as we need it).
5. Live in the moment - Worrying about the future steals the joy from today. More trite advice but, again, it works. I remind myself often, “You don’t really know what’s going to happen.” Yeah, I know the odds aren’t in my favor, but I refuse to succumb to those spiraling thoughts.
6. Adapt - It’s not “survival of the fittest,” it’s survival of the ones most able to adapt. Stay ahead of the progression as best you can. This is where your new knowledge comes in handy. For instance, when I noticed my PALS was starting to have trouble holding a plastic glass, I put rubber bands around it so it wouldn’t slide out of his hands. After a while, that wasn’t enough, so I got plastic glasses with a handle. This is a small example, but the point is that there is a solution for just about everything - if you are willing to adapt. (Not saying it’s always easy.)
7. Stay hopeful - This is absolutely impossible to do every minute of every day, but if you can be hopeful 51% of the time, that’s a victory. There has never been a moment like this when ALS has so much attention from researchers, scientists and drug companies. Breakthroughs are on the way. And Dr. Richard Bedlack at Duke’s ALS Clinic tracks reversals. It’s not common, but some people have actually reversed this disease. He’s working to find out how and why this happens.
8. Mow the grass - When you’re mowing a big field or lawn, it can be gratifying to look over your shoulder and see how much progress you’ve made. Acknowledge yourself for how far you’ve come and all that you’ve accomplished.