How I made my own resilience checklist to live with ALS

Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why?

During those months, even though I was adapting as best I could — such as transitioning from walking with a cane to the combination of pushing a rollator while wearing a pair of ankle-foot orthoses — I still worried about my ability to cope with symptom progression and other changes.

I opened the packet anew, but what I searched for was simply not there; I saw no quick, easy checklist on how to be resilient while living with ALS.

I could’ve blamed my doctor and spiraled into a mental funk. Instead, it spurred me to begin my quest to explore everything I could about resilience and to create my checklist to share with others.

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What happened

Exploring online, I learned that researchers had identified life areas where, when we ALS patients experience loss, we’re most profoundly emotionally vulnerable. Those life dimensions include social roles, independence, relationships, hobbies, and careers. When faced with loss in any of these areas, ALS patients either succumbed to feelings of hopelessness or had hope and began coping.

That was something I noticed happening to patients in my own ALS community. Some were mentally stuck in what I call the ALS waiting room, while others accepted their diagnoses and seemed to effortlessly move on with their lives. They found a way, adopted a personal mission, traveled, joined sporting events, and remained noticeably positive, optimistic, and hopeful.

That brought me closer to understanding resilience as the ability to bounce back from adversity, cope, and return to feeling emotionally balanced.

What I found

Here’s the thing, however. There’s no quick method, checklist, podcast, or short video on social media on how to achieve resilience, especially when ALS is involved. Because ALS progression and other changes are different for each person, our coping strategies should be unique as well. And that means a lot of trial and error.

But here’s the other thing: Even though some of us have never had to test our resilience and others have only tapped into it once in a while, resilience can be learned. The more you use it, coping with adversity and life’s challenges becomes easier to do.

Here are some suggestions that worked for me:

• Challenging the loss or problem by assessing alternative solutions. Think outside the box. Ask others for their input and be adaptable.
• Accepting the loss or problem without resigning to it. Change your mindset and remain positive.
• Focusing on what can be done to resolve the situation. Plan, allow more time, and be OK with moving slowly or asking for help.
• Retaining control, independence, or final decision-making. Empower yourself. Remember that your response is more powerful than your circumstance.
• Relying on supportive relationships. Involve your caregiver, family, friends, and medical team. Reach out to internet groups and forums.
• Proactively using functional and technological assistive devices. Stay current on what’s available, listen to your medical team, and check with your ALS care services coordinator.

My quest led to a book, a blog, and this column! I invite you, your family, and your friends to join me as we tap into our resilience and learn to 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.