May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in the early dawn hours, and mallard ducks have returned to my yard. The evenings stay lighter…
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Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and…
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…
Recent Posts
- MDA Engage: Patients can take steps to improve breathing issues
- Low muscle mass may help predict survival in people with ALS
- The changing of the seasons reminds me of life with ALS
- Targeted therapy may improve function, survival in FUS-ALS
- Building small habits through exercise to stay strong with ALS