Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…
This past weekend, my husband, Todd, coached our son, Isaac, in making and installing a shelf in our daughter’s bedroom. It was a corner shelf with an obtuse angle, so they had to measure the angle, cut the boards to fit, and join the two halves of the shelf together.
An email that landed in my inbox the other day made me sit up and take notice. It was from a dear friend who is a care services coordinator for the ALS Association of Wisconsin. She shared a link to an article about a recent study on mindfulness and…
After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded three minutes of his expression while sitting in our yard in the November cold, drawing on…
Last week at Walgreens, the cashier asked me if I got the senior discount. I’ve never been asked that before, but perhaps the stress of caring for my disabled husband has finally caught up to me. “How old do you need to be to be considered a senior?” I asked.
Does it matter what I choose to wear to my ALS medical appointments? I think it does, and my reasons might surprise you. Hopefully, once I explain myself, you’ll be convinced that what you wear will make a difference for you, too. Busy days, busy me In my pre-ALS…
I was an avid cyclist in the warm months, and in the winter months in Cincinnati, I was a league bowler. But in late 2009, I started falling as I released my bowling ball, which turned out to be because of weakness in my left leg. After seeing an orthopedic…
As summer comes to an end, we’ve recently passed a couple milestones. Our son, Isaac, celebrated his 13th birthday at the end of August. That was not something we thought my husband, Todd, would live to see when he was diagnosed with ALS. Isaac was only 9 months old…
Is it just me, or are people speaking at a faster clip nowadays? Yeah, maybe it’s just me. It seems I’ve become hypersensitive to the various speeds and rhythms we use to communicate with each other, especially now that I live with dysarthria, a symptom of ALS that affects…
Power wheelchairs are expensive, and while Medicare covers the base cost, many beneficial features are an additional out-of-pocket expense for those already facing the high cost of living with ALS in the United States. Nine years ago, we began the process of ordering a power wheelchair for…
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