I thought you might be interested in my perspective of dealing with this disease. I found this article that really spoke to me. I changed a few things. I added a few of my own words and feelings and deleted what didn’t speak the truth for me.
What is Good About Living with ALS?!!
1. The truth is, living with ALS requires a sense of humor, dark and/or light hearted, to keep your sanity. And dignity becomes a lost cause all too quickly. You can either laugh or cry, and it is far better to laugh.
2. You find immense clarity of what really matters. Feeling the warmth of the sun on my face and ocean water lapping at my feet – priceless. Watching my grandchildren run and laugh and play – priceless. Being with family and friends – priceless.
3. You discover good, compassionate people who come into your life to replace the ones who fade away. You are amazed at the resilience of your family and friends who give of themselves to ease your struggles.
4. You take nothing for granted, knowing that this life is precious and no one lives forever.
5. You shift your focus on ‘stuff’. Collecting ‘stuff’, buying ‘stuff’, and saving ‘stuff’ all are colored with the very real ‘do I need this stuff’ question. Fundraising that will produce a cure is more interesting than ‘stuff’.
7. You lose the drive to expect people to behave in certain ways, and find relationships can be so much better without those expectations. You can be happy and grateful for what happens rather than miserable for what doesn’t.
8. You can let people know how much they mean to you and listen to how much you mean to them.
9. You can write this chapter of your life as you wish. You can choose to enjoy every moment possible. You can choose to live the life you have left as best you can, with courage and strength and humor and grace.