As I face another 30-day stay in a health facility, what may be a pipe dream keeps bobbing around in my head. I’d love to see an opportunity for health aides to become certified in the care of ALS patients. This appeal is not a call for a formal…
Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office. When we built our accessible home over a decade ago, we put hard flooring throughout the house in anticipation that my…
Who knew that losing the ability to roll over in bed was an essential indicator of worsening ALS symptoms? I sure didn’t. That is, not until I was diagnosed with ALS and learned that a whole host of simple everyday behaviors were included in the 12-question functional…
When my late husband, Jeff, and I were living with his ALS, we were both drawn to spending time outside. While this wasn’t all that different from our life before ALS, somehow, when faced with his disease, sitting in nature brought a new level of peace that…
My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village.
I take pride in keeping a well-organized to-do list. Each day of the week has a set number of tasks, and each task is broken down into doable actions. It’s the “I’m under control and calm” approach. It’s perfect for someone like me who lives with ALS. But life’s…
I am certain that many in my generation are familiar with the following words: “Raindrops on roses and whiskers on kittens/ Bright copper kettles and warm woolen mittens.” For the youngsters, those are lyrics from “My Favorite Things,” from the Broadway musical “The Sound of Music.” The song…
The other evening, our daughter, Sara, read “Bread and Jam for Frances” aloud while I finished feeding dinner to my husband, Todd. He used to read this children’s book about a young badger with human qualities to Sara when she was little. In the book, Frances has an…
The other day my husband, Todd, told me he forgot to ask the caregiver to spray out his clicker tube for his HeadMouse. Because he’s paralyzed from ALS, he clicks his computer mouse by sipping and puffing on a straw, and we only need to replace it once…
“So tell us, Dagmar, what’s your latest project?” The question came from my neurologist as we chatted during my recent ALS clinic visit. She asked not only for herself, but for the medical student who was also in the room. As I prattled on, part of my brain reflected…
