I must confess, whenever I’m in a crowded public place, I wear a face mask. Why? Because I’m a person living with ALS and doing everything I can to keep my immune system in tiptop shape. Plus, being the only person wearing a mask doesn’t bother me. In fact,…
When my late husband, Jeff, was diagnosed with ALS in October 2018, I remember the early, seemingly insurmountable feelings of fear and bewilderment. I remember understanding that we were out of our depth in a completely foreign world of symptoms, appointments, and terminology, layered with the unbelievable knowledge…
We had another close call last week. I was out mowing the fields while a nursing assistant was caring for my husband, Todd. She was one of his first caregivers after he lost his ability to walk and bathe himself due to ALS. At the time, Todd still…
Ask me what I think about having a do-the-same-thing-every-day routine and I’ll tell you it is great. Especially now that I live with ALS, having and following a consistent daily routine is absolutely vital to my health. A daily routine is something almost everyone has experienced at some point…
Just when we think life has dealt us the worst hand possible, along comes someone whose circumstances make ours look a little less daunting. I’ve experienced that feeling a few times in a support group I attend and when online. But one of the most difficult hands I’ve seen in…
“Two are better than one,/ because they have a good return for their labor:/ If either of them falls down,/ one can help the other up./ But pity anyone who falls/ and has no one to help them up.” — Ecclesiastes 4:9-10 (NIV) Because my husband, Todd, has…
I’m writing this column on a tough and emotional day — the anniversary of the 2018 ALS diagnosis for my late husband, Jeff. For the day I might have planned, I’d be hiking up Old Rag Mountain in Virginia, perhaps sharing the pretty view on social media,…
My 16-year-old-daughter, Sara, watched a TED Talk by Angela Duckworth on grit in her AP Language class. Sara was not impressed. “I don’t want to have grit,” she declared. Many of her high school friends are taking college math classes while she is on the standard math track. She sees…
I love scrolling through the short videos people post on social media with tips and tricks to help make everyday tasks easier. Commonly called “hacks,” these are easy shortcuts that often involve repurposing items found around the home. For people like me who live with ALS and the…
I contend that most people diagnosed with physically debilitating illnesses later in life previously had a favorite activity that consumed much of their time. Cycling was that for me. My cycling life ended nine years ago, and even then, I reluctantly stopped because of my inability to unlock my…
