How a Little Headlamp Helps to Calm My ALS Mind

One of the many things I love about living in Arizona is its unique weather patterns. For 10 months out of the year, we have warm temperatures and clear skies, followed by two months of thunderstorms. But lately, my ALS has made me dread each downpour — until I found a simple solution. You could say I calmed the storm in my mind. Here’s how I did it.

A stormy problem

Arizona is currently experiencing what’s called the rainy monsoon season. Almost every late afternoon from July to August, bursts of heavy rain, lightning, and booming thunder race across the sky. By late evening, the storms usually disappear, we wake up to clear skies, and the cycle begins again.

Once in a while, a strong bolt of lightning will hit a utility pole in our town, causing the power to go out in our neighborhood. While power usually is restored within a few minutes, occasionally it’s off for several hours. If that happens at night while we’re watching TV, the house is suddenly plunged into pitch-black darkness. All we can do is wait.

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Power outages never used to bother me before I began experiencing ALS symptoms. In fact, I secretly enjoyed the adventure. But now, a simple trip to the bathroom in the dark is a treacherous journey as I try to avoid crashing my rollator into furniture along the way.

Even with my husband valiantly holding a flashlight to help illuminate my path, he never seemed to point it where I needed light. This, of course, severely tested our communication skills, which often dissolved into strained commands.

Whenever the monsoon season came around, I found myself anxiously checking the radar app on my tablet and hoping the storms would steer clear of our town, neighborhood, and home.

Inspired by rescue divers

Then, just a few weeks ago, I had an aha moment while watching the movie “Thirteen Lives.” What held my attention were the small headlamps the rescue divers wore to help them navigate the murky waters of flooded caves.

A headlamp! Exactly what I needed.

The next day, after a quick search online, I placed an order, and my personal headlamp arrived the following day. The headlamp is small, comes with an adjustable strap, and has a powerful light I can point exactly where I want it to shine. I keep it stored near my computer, next to my voice amplifier. At the first hint of an evening storm, I hang the headlamp from my rollator and have it ready to go.

Although I haven’t had to use it during a power outage yet, that little light has given me peace of mind. It’s given me a sense of control and pride because I used my ALS adaptability to find a solution to my problem!

Chalk it up to being another example of how we can 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.