ALS and wildfire smoke remind me there’s only so much I can control

Last week, the winds shifted, bringing plumes of smoke from wildfires in Minnesota’s Boundary Waters and Canada across Lake Superior to Michigan’s Keweenaw Peninsula. While our lives and homes are not at risk, unlike those in the areas burning, the smoke still affects daily life. It’s especially concerning for people with health sensitivities, such as my husband, Todd, who has ALS.

I was alarmed to see air quality levels in the 900s, the highest I’ve ever seen here. Even indoors, I developed a headache and sinus symptoms.

I bought N95 masks at a local hardware store and ordered a heavy-duty air purifier online. While waiting for it to arrive, I found myself in the filter aisle at Walmart with others trying to figure out which ones would block the smallest smoke particles. The best filters were already gone, so I bought several of the next best, along with an extra box fan. At home, I taped the filters to the backs of the fans to jerry-rig two air purifiers.

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Even with them running, I could still smell smoke in the house, and my headache lingered. I tried to pinpoint where the smoke was getting in. I could feel and smell it seeping through unused exhaust vents and around doors. I sealed those areas with painter’s tape and plastic.

The smoke smell cleared, and so did my headache.

Instead of my usual walk outside, my daughter led me through a dance workout in our living room. I kept checking the air quality online, hoping the wind would shift. I also hoped my brother and his family wouldn’t cancel their planned visit. I had daytime caregivers scheduled to care for Todd so I could get out for a couple of activities.

The situation felt familiar.

Managing what I can

Again, I found myself responding the same way I do with Todd’s ALS — trying to solve whatever problems I can. I’m used to monitoring numbers and watching for changes, such as tracking Todd’s forced vital capacity as his breathing declined.

I’m also used to uncertainty. Any plans I make are always contingent on Todd’s health, so I always hold them loosely.

Todd has been largely unaffected by the smoke because he breathes filtered air through his noninvasive ventilator. I asked if he noticed any difference in his breathing, and he hasn’t, though we had to replace his filter after only a couple of days when the smoke was at its heaviest. Now the air in the house is clean, and he doesn’t leave our home anyway.

In the end, there is only so much we can control. I can tape vents, run air purifiers, and monitor the numbers, but I can’t change the wind. The same is true with ALS. I manage what I can, but it often doesn’t feel like enough.

So, within those limits, I keep looking for small ways to live life anyway.

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.