In 2012, two years after my husband, Todd, was diagnosed with ALS, he and I made a trip to a larger town a couple hours away to pick out fixtures and appliances for our new accessible home. After purchasing the items and scheduling the delivery, we headed back to…
Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety. Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case…
After my husband, Todd, was diagnosed with ALS, we moved closer to my parents because we knew we’d need their help as the disease progressed. We built an accessible home on the spot where their old barn had stood when I was growing up. We weren’t sure how much…
After the loss of my beloved dog Rudder when he was 12 years old, a close friend observed with concern that she hadn’t seen me cry. It was true, I hadn’t shed any tears publicly, and even privately I sat with my grief quietly and alone. Rudder had gotten me…
“You really have everything figured out,” one of my husband Todd’s new caregivers said as I was helping her transfer him into bed using his overhead lift. We’ve been managing ALS and paralysis for a long time, and we continue to improve our processes for Todd’s nighttime care.
A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment. He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to…
Living with ALS presents many challenges. For me, navigating life with a rollator, thickened beverages, and daily medication often feels like an uphill battle. There are days I wish I could go back to a simpler time, before ALS moved into my life. But since turning back the clock…
It was seven years ago this summer that I unwittingly and unwillingly became a part of the ALS community when my late husband, Jeff, began exhibiting foot drop and slurred speech, symptoms that were worrisome enough for us to seek medical answers. His relatively quick diagnosis of ALS that…
Someone in an online caregiver support group posted that they were finding value in using ChatGPT as a therapist. Other caregivers chimed in, saying they also turn to the artificial intelligence chatbot for support and find it surprisingly helpful. One person suggested prompting it to “respond like a counselor” or…
Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years…
