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…
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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…
I’ve been living with ALS for 12 years now, and it’s certainly taught me many lessons. They’ve involved having patience and perseverance, as well as getting back up over and over. The most important lesson, however, has been to let the present moment be what it is, instead of…
If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and affinity for gentle teasing relied, in some part, on his ability to speak. Or he might…
“Are you ever going to go faster, Mom?” my 12-year-old son, Isaac, asked earlier this summer when I caught up to him at the bottom of a hill, where he was waiting for me. I enjoy mountain biking with him. At times I ease off the brakes on a smooth…
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