Every once in a while, a common question circulates on ALS social media sites: “What would you do differently if you were diagnosed today?” The replies are interesting and often filled with regrets, such as trips not taken or home modifications made too late. I’ve participated in these discussions…
Before my husband, Todd, had ALS, our marriage had a normal rhythm to it. He’d go to work, and I’d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks…
Making and keeping friends did not come naturally to me in childhood. I was shy, and my introversion and love of books often kept me curled up on the couch reading while other neighborhood kids biked and played tag. I craved the interactions I noticed other kids having,…
When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent “Freakonomics Radio” podcast episode, “Swearing Is More Important Than You Think.” The host, Stephen Dubner, is struck that there seems to be more swearing now than…
Imagine this: A 71-year-old ALS patient riding a mobility scooter visits her local furniture store. I mean, what can go wrong? Well, a whole heck of a lot can go wrong, at least according to all the worst-case scenarios that flooded my mind. From the comical to the complete…
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.
