We Must Rely on Our Resilience
Lately, living with ALS amid the continuing world health crisis has me dialing my resilience-meter up to “high.” Why? Both have limited treatments and no cure in sight, and convert our old “normal” lives into an ever-changing world of new normal. And both require resilience.
Resilience is our ability to transition through, cope with, and survive change. I learned how to tap into my own resilience when I was diagnosed with ALS, and I continue to rely on it 11 years later.
I’d like to share a few examples of how having resilience helps me through ALS-related changes, for those readers who might be just beginning their journey with ALS, and for those who have been living with the condition for a while now.
Since ALS symptoms differ widely from one patient to another, we often feel frustrated and alone when trying to deal with our own particular variation. When I began experiencing swallowing issues, I thought, “That’s it, a feeding tube is the only answer.”
But when a good friend who is a retired nurse suggested I try something she remembered being used in her mom’s nursing home, I found my solution. It was simply adding a special thickening powder to my drinks. Suddenly, swallowing was easier again. I even bring a small travel mug with a pre-thickened drink mix with me when dining out. I can enjoy the meal and have no worries about choking.
Build an ALS stress toolbox
One important coping strategy is to know we can’t control everything, but we can control how we respond. I choose to respond with humor and positive self-talk.
Whether I’m using my rollator or mobility scooter, public restrooms always pose a challenge for me. When I find missing locks on doors or misplaced grab bars, I don’t get angry. Instead, I pretend I’m competing in an episode of “American Ninja Warrior.”
Self-care isn’t selfish, it’s essential
Everybody needs self-care, but those of us with ALS have to approach self-care a little differently. For most folks, spending time alone, doing nothing, and performing minimal movement is a gift. But it’s not for people with ALS. We do that every day.
To avoid isolation and a lack of social interaction, and to increase my physical movement, I’m a “go-along.” Whenever my husband needs to run an errand, I go along. Whenever possible, I join in Zoom meetings or meet up with friends.
Some of us have never had to test our resilience. Others have only tapped into it once in a while. During this challenging time, let’s build our resilience, take life one day at a time, and live well while living with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.