When the calendar changes to a new year, people often become excited with the hope that this year will be better than the last. It is viewed as a time to start over, to make resolutions and goals. For myself and many others with ALS, springing to the next calendar year is not as exciting.
For some pALS having a new year can cause some negative emotions.
For instance, I’m supposed to be dead within the next three years. Every day that goes by pushes me closer to that date. Every day that goes by pushes me closer to being completely paralyzed. Every day that goes by leads me closer to the time that I will not be able to swallow or breathe on my own.
My prediction is that by the end of this year, I will not be able to feed myself.
Once I lose the ability to use my arms, I will have lost my independence, and I most likely will not be able to stay home alone.
Goals for pALS are often different than someone without a terminal illness.
My big goal is that by the end of 2024 I will still be alive. I'm guessing that's a goal that most people do not entertain. Who of you has “staying alive” (not the song from Saturday Night Fever) on their list of resolutions?
There is not much I can do to ensure it happens, but there are some goals I can make to plan for my demise.
There are some resolutions I can make that are different from someone without ALS or some other terminal illness.
I need to spend more time practicing with my eye gaze. I can't type on my laptop any longer. I still have my voice, but if I do lose my voice in the future, I will need to be proficient at using my eyes to type.
When I was diagnosed five years ago, I was told to get my affairs in order. This seems to be a common thing amongst pALS. The doctor walks in, sits you down and says, “You have ALS, X number of years to live, go home and get your affairs in order.”.
Part of this charge is to complete my Advance Directive, fill out the Five Wishes form and even partially write my obituary.
Why not add these to your list?
Time seems to be flying by. Don't let time fly for you. Check a few things off your “Someday” list now.