Thinking of gift ideas for my husband, Todd, has always been a challenge — especially since he’s been paralyzed by ALS. Some of my gifts to him haven’t gotten much use, like a heated jacket that he found too hot. He used it a couple times when we went…
Is anyone else feeling winter-bluesy-cabin-feverish? I know I am. I’ve been feeling that way for the past couple days. It always happens to me at this time of year, and because I live with ALS, it’s especially challenging. I blame my off-kilter mood on February, with its dark mornings…
A widely used saying in the English lexicon, “Hope springs eternal,” was coined by the poet Alexander Pope to simply suggest that hope is always available to us. It means a great deal to patients with rare, fatal diseases and our loved ones to know that hope is…
If we’d anticipated my husband, Todd, needing nighttime caregivers, we would’ve designed our accessible house differently, but we probably wouldn’t have been as happy with it. After Todd was diagnosed with ALS in 2010, he told me, “We need to sell the house. We need to move near…
Growing up, I always associated the month of February with Valentine’s Day, a holiday filled with hearts and flowers. But now that I live with ALS, the holiday is nowhere near as important to me as Rare Disease Day on Feb. 28. ALS is among the many…
When baseball legend Lou Gehrig was diagnosed with ALS in 1939, unfortunately, not much about the disease was being discussed at the time. Instead, Gehrig’s career and baseball prowess dominated the news and public discourse. His larger-than-life persona was well deserved, but his illness was also larger than…
While my late husband, Jeff, was living with ALS, there was a place where we both felt supported and hopeful, his disease understood. Driving through the streets of Baltimore as we wound our way toward the Johns Hopkins ALS Clinic, I could’ve felt trepidation, as sometimes on clinic…
More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now…
Even though I continue to practice daily voice skills to help me prepare for in-person conversations, I’m still challenged by the pronunciation of certain words. Often, I avoid the word altogether and use a simpler version. Or I simply plow ahead, slurring and bumbling my way and relying on lots…
In the Jan. 23 episode of “The Happiness Lab” podcast, Simone Stolzoff, author of the book “The Good Enough Job: Reclaiming Life from Work,” argues that we should stop hunting for the perfect job. Stolzoff and podcast host Laurie Santos, a psychology professor, discuss how society’s view of work…
