Columns

In a recent column, I described how I panicked following my ALS diagnosis. With the prognosis of having only two to three years to live, suddenly there weren’t enough hours in the day to do what I wanted to do. My mind hyperventilated with seemingly endless thought…

When I was in my early teens, I was awakened by what sounded like a rushing wind, followed by the inability to move any part of my body. It was a frightening sensation, and worse was the feeling of someone standing over me with the notion of harming me. I…

While in town the other day, I ran into an old friend. My husband, Todd, and I had gotten to know her and her husband when they first started attending our church. We had invited them over for dinner along with a few other families. Then we met weekly with…

I enjoy reading motivational blogs written by people from all walks of life outside the ALS community. What they write not only inspires me, but also gives me lots of new ideas. However, one recent blog post had me fuming. The author described how she was transforming her life…

Today I had a mammogram. We have a family history of certain cancers, so I’m careful to get recommended screenings. After losing my husband, Jeff, to ALS, I feel a bittersweet commitment to taking care of myself as he would want. Looking after my health after he’s gone,…

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…