How I learned to live — and thrive — with ALS
It took nearly a year to bridge the mental gap and accept reality
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While scrolling through social media the other day, I came across a question that stopped me in my tracks: How has having ALS impacted your life for the better?
I scanned the replies and thought to myself, “It all depends on which chapter of my ALS journey you’re asking about.”
Right after my diagnosis, I would’ve joined others whose responses expressed anger, disbelief, and indignation at the idea that ALS could bring anything positive. Today, 16 years later, I have no trouble pointing to the positive lessons it has taught me.
Stuck in the gap
Like most newly diagnosed patients, it took me nearly a year to bridge the mental gap between hearing the news and accepting reality. During that initial phase, I adopted an attack-mode mindset. I felt locked in a battle with an unknown invader that was rapidly transforming my fit, healthy body into one that felt stiff, weak, and sluggish. I spent countless hours online searching for special diets, quick fixes, or cures, constantly asking, “Why me?”
It was a sobering moment when I realized medical experts didn’t have the answers either, offering very little regarding treatments and nothing about a cause.
Fortunately, my background as a wellness trainer kicked in. I reminded myself that while we cannot always control life’s sudden shifts, we can control how we adapt to them. Treating myself like one of my former students, I drafted a simple framework for daily living. To my delight, I later found several studies that validated the exact components of my plan.
My new strategy
I called it the “4 Ms“: medication, mindfulness, motion, and mood. This simple structure — taking my prescribed medication, staying present, moving daily, and practicing intentional optimism — became the foundation of a resilient ongoing daily routine. Besides practicing morning rituals, doing therapeutic exercises, and engaging in mental activities that challenged my intellect, I prioritized a healthy eating plan.
Over the last 16 years, this daily living plan has evolved alongside my symptoms, helping me weather life’s disruptions, both joyful and challenging.
So, how has having ALS positively impacted my life?
Besides teaching me to embrace change and create a long-term daily living plan, I’ve learned to honor my body’s signals instead of pushing through pain, and to prioritize rest. In addition, writing this column and comoderating the ALS News Today Forums has connected me with fellow “pALS” around the globe, turning potential isolation into online friendships and sharing helpful advice.
So, I’ll pass the question on to you: How has living with ALS impacted your life and perspective for the better? Let’s keep supporting one another, sharing hope and motivation, and learning to live well while we live 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.
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