Columns

When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our…

Twelve years ago, my husband, Todd, and I installed bamboo flooring in three bedrooms and the living room of our new accessible home. Todd had been diagnosed with ALS two years before, and his arms had become quite weak. Contractors built most of the house, and a few volunteers…

Imagine you’re all alone, stranded on a remote island and surrounded by miles and miles of uncharted ocean. Here’s my question: How much time would you let pass before giving up hope of ever being rescued? One year? How about five years? Or are you an “I’ll never give up…

A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my…

I’ve previously written about sleeping and described how bedtime is one of my most anticipated periods of the day. In this column, I’d like to go a little deeper and get some feedback from other ALS patients. Do you remember the Julia Roberts movie “Sleeping with…

“I’ve learned a lot of stuff I wish I’d known 30 years ago,” my husband, Todd, said after eating a meal of baked fish that I’d first brined, per his suggestion. Todd is paralyzed because of ALS, and he uses a noninvasive ventilator. His neck is too weak…

How do you handle an unexpected change to your plans for the day? Do you shake your fist in the air and complain, or pause and look for opportunities? Last week, I was doing a little of both. I have ALS, and even though all of my life plans…

“I didn’t realize how weak my voice was until I was in a room full of chatter and background noise,” my husband, Todd, said after we had a stream of visitors for the past month and a half. At the end of May, many of my husband’s extended family came…

ALS patient Brian Wallach and his wife, Sandra Abrevaya, have made a significant and positive impact on the ALS community via their heart-wrenching 2022 documentary, “For Love & Life: No Ordinary Campaign.” In case you haven’t seen it yet, I won’t share much about the content. Suffice…

Since my husband, Todd, was diagnosed with ALS 14 years ago, I’ve been on the lookout for technology that will improve his comfort and quality of life while making my role as his caregiver safer and easier. Moving Todd is hard on me physically. He’s a big guy, and…