Holding the line: Why I’d keep my ALS progression exactly as it is

I was recently asked: “If you could reduce uncertainty in one area of your life with ALS, which would it be?” I took a few moments to think, then blurted out: “Keep my current symptoms exactly as they are. No more changes, no more surprises.”

What? No wanting to go back in time? No swapping lives with someone else? Nope. Simply let me stay where I am, with my current abilities.

Let me explain.

I recognize that we all travel different paths with ALS, and my experiences are unique to me. My view of uncertainty is shaped by the perspective of 16 fortuitous years living with this disease. I won’t take credit for my longevity or claim I’ve influenced my slow progression. For those gifts, I am simply grateful.

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First year and beyond

I vividly remember the mental numbness of that first year. Like many newly diagnosed patients, I felt stuck and overwhelmed, watching the world move on without me. I turned against my own body, blaming it for failing me every time the toes of my shoes dragged, threatening a nasty fall. Independence vanished. Rollators and ankle-foot orthoses, or AFOs, moved in. Driving, cooking, and spontaneous walks became memories.

Ever so slowly, I decided that while ALS was in my life, it wouldn’t dictate my life. I started trusting my instincts and facing my fears, often using a bit of sarcastic humor to get through the day.

For instance, I reached a point where I couldn’t sit down or get up without help. My “sitting” had become a free-fall “plop” onto the chair. Fed up with the pulling and plopping, and terrified I was losing my leg strength forever, I designed a mini-program of chair squats. At the time, exercising was controversial for ALS patients and often discouraged by many doctors.

I did it anyway. I urged myself on with a bit of dark logic: What’s the worst that could happen? My ALS might get worse, and I could end up in a wheelchair. I was already staring that reality in the face; I at least wanted to know I’d tried.

At first, all I could manage was one repetition. Positioned with a chair behind me and a rollator in front, I made a deal with myself: be willing to do just one slow “sit-down” every day for a week.

It turns out I didn’t have to wait a week. Within four days, I realized that doing one in the morning and one in the afternoon would double my progress. By the end of the week, I doubled it again. Today, I do 10, twice a day.

A calm life

That progress is why I’ve reached a comfortable place. It is a strange, navigable calm — a stage where I can breathe a sigh of relief and rely on my daily habits to carry me through. It isn’t the life I originally wanted, but it has pushed me into a state of habitual mindfulness. I have a newfound appreciation for the present, both for the mental stillness it requires and for the focus needed to supervise my body’s movements. I’m grateful for that lesson as well.

For me, living well with ALS is about facing my fear of change. I’ll admit that fear is why I’m comfortable with where I’m at right now.

Maybe I can’t mitigate every change if my symptoms progress, but I’ll surely make every effort to do so. I know I can rely on my sense of humor and ability to laugh at the absurdity of my daily challenges. ALS may take my movement, but it can’t touch my spirit.

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