Getting out of the house is always a challenge because my husband, Todd, has ALS and needs care almost 24/7. I never know if I’ll make it to my Monday night ukulele group. When I do, I’m usually rushing to feed Todd, help him in the bathroom, and get…
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As soon as I reached for the sock, I knew it would fall to the floor. And it did. I retrieved it by slowly bending sideways in my chair, stretching my arm in its direction, and with a mighty oomph, finally seized the soft fabric. That was just one speed…
After my husband, Todd, got ALS and I became his caregiver, I turned to reading and writing as a way to cope. Reading helps me make sense of life, or sometimes just step outside of my life for a while. Writing helps me sort through what I’m thinking and…
In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…
When we got our goldendoodle, Comet, as a puppy almost 13 years ago, my husband, Todd, walked him around our property line to train him to stay close to home. After Todd became unsteady on his feet, he tooled around our yard on a scooter with Comet riding between his…
I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to…
I brought “Some Bright Nowhere” by Ann Packer with me to Florida as my spring break beach read, but it wasn’t exactly light material. It’s a novel about a woman dying of cancer. Columnist Kristin Neva’s spring break beach read was “Some Bright Nowhere” by Ann Packer. (Photo by…
I originally planned to write this week about the small ways I’m maintaining my mobility and muscle strength while living with ALS. However, I waffled back and forth about whether this was a suitable topic. My hesitation wasn’t because my observations were unreliable, but because I worried readers might…
I left my husband, Todd, at home in Michigan last week while I flew with our teenage son to Florida during his spring break. Getting away takes planning and requires a lot of help at home while I’m gone. For me to be able to leave, we had to assemble…
Some days, my life with ALS feels like I’m trying to force a square peg into a round hole. On second thought, forget “some days” — I feel that way almost every day. There are the small irritations, such as having to wrestle with uncooperative Velcro on my…
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