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My husband, Todd, finally got in his new wheelchair! After it was delivered in September, I wrote that we needed to have the attendant control reprogrammed. That finally happened, and we’ve been fine-tuning the chair over the past week. Although both are the same brand, there are differences between…

For most people, February is a month filled with hearts and flowers. But for me, it’s all that plus a vibrant display of ALS zebras and a splash of green, pink, blue, and purple. Zebras? You might wonder what a striped animal has to do with a neurological disease…

Over the past few weeks, it’s been unseasonably and brutally cold here in Maryland, where I live. A severe storm coated much of the state with fluffy snow, then several inches of hazardous ice that hasn’t melted. This might be pretty if it weren’t so treacherous, leading to more accidents…

Last night, I had a dream in which my husband, Todd, did not have ALS. It was a bit of sweet respite from my day-to-day life, and I woke up missing that old version of us. In real life, I am Todd’s caregiver. He is completely paralyzed and needs…

In the 40-plus years rollators have been around, few design modifications have been made. The changes that have been made target an older demographic. But today’s rollator users don’t just live in nursing homes — we are traveling, attending social events, and seeking designs that match our lifestyles. If you…

Last weekend, I left my husband, Todd, with a caregiver while I attended our daughter’s dance performance at Northern Michigan University. “Love Is A Burning Thing: A Johnny Cash Ballet” was the CO/LAB Dance Company’s tribute to Johnny Cash, featuring a number of his songs. The energy in…

After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either. This is hard to write, but even harder to own. Asking for help used to be difficult for me.

Three years after my husband Todd’s ALS diagnosis, a friend put me in touch with another family who had been dealing with the disease for about a year. I listened as the adult daughter told me how her mom, who had ALS, couldn’t move at all, and how her…

I have a pair of cute, pink, 1-pound dumbbells that sit on a side table within easy reach of my desk. I put them there last summer with the best of intentions: I’d perform a few simple arm exercises during my breaks from focused computer work. How often have I…

“My body looks the same, but it works differently now.” A friend told me that 30 years ago, following her abdominal surgery. I remember nodding to show compassion, while secretly thinking, “I haven’t a clue what she’s talking about.” Decades later, living with ALS, I finally understand. When I…