living with ALS

Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS. A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves…

My son joined middle school track this year, and after a few days of practice, my husband, Todd, asked how it was going. “I’m not a long-distance runner,” he said. “I don’t know how to pace myself.” “I was no good for any distance, either,” Todd said. “I ran…

I make lists to keep track of everything I need to do in addition to taking care of my husband, Todd, who has ALS. Make an appointment to have the snowblower removed from the tractor and the bucket put on. Get the snow tires swapped out for summer…

A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS. Over the years, I added…

When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…

A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…

One of my duties as a moderator for the ALS News Today Forums is to encourage new members to discuss their worries about living with the disease. I often find myself repeating the same advice over and over: that they be open to changing their perspective, that they…

I have always been a summer person, relishing how everything in nature quietly comes to life — lush, green grass, abundant wildlife, and densely leafy trees. To me, summer evokes peace, calm, and lazier days. My late husband, Jeff, on the other hand, was a winter person. As much as…

One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has ALS and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained…

I love it when all of my planning unfolds exactly as expected, and at the end of the day, I can pause to exhale, smile, and tell myself, “That went extremely well.” I wasn’t always an avid planner, but I’ve become one. Planning is just one of the many…