The other evening, our daughter, Sara, read “Bread and Jam for Frances” aloud while I finished feeding dinner to my husband, Todd. He used to read this children’s book about a young badger with human qualities to Sara when she was little. In the book, Frances has an…
Columns
The other day my husband, Todd, told me he forgot to ask the caregiver to spray out his clicker tube for his HeadMouse. Because he’s paralyzed from ALS, he clicks his computer mouse by sipping and puffing on a straw, and we only need to replace it once…
“So tell us, Dagmar, what’s your latest project?” The question came from my neurologist as we chatted during my recent ALS clinic visit. She asked not only for herself, but for the medical student who was also in the room. As I prattled on, part of my brain reflected…
On a bitterly cold morning in New York last weekend, I woke before the sun and walked through the empty city streets to the Times Square subway station. From there, I caught a train to Brooklyn, the starting line for the United Airlines NYC Half, where more than…
My husband’s nose wouldn’t quit bleeding this past Sunday morning, preventing him from using his noninvasive ventilator. Todd is paralyzed from ALS, so he sat in his power wheelchair in front of the bathroom sink as I went to work. I packed his nostril with wadded up…
ALS has taught me many life lessons, and a very important one is to never give up. For example, some days I get up, get going, and suddenly notice that one of my body parts isn’t moving as well as the day before. It’s a small, quirky thing, like…
On a snowy morning three years ago, in Ann Arbor, Michigan, my late husband, Jeff, sped the entire length of the University of Michigan football field in his blue power wheelchair. Light snow was falling as his brothers and I watched him fly down the field, a…
My husband, Todd, and I enjoy watching chickadees flit from a feeder that hangs from a mountain ash tree behind our house to one of the branches, where they crack the shells and eat the sunflower seeds. “Let Comet out,” Todd told me one morning. “There’s a squirrel in the…
On the ski trail the other afternoon, I was feeling discouraged. I hadn’t slept well the previous couple of nights and had a low-grade headache, but I willed myself to keep going. Exercise is good for my body, and being in nature usually soothes my mind. They’re two of…
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…
Recent Posts
- My principles for finding and giving support in the ALS community
- MDA Wings Over Wall Street gala returns to fund critical ALS research
- My husband doesn’t get out much, but he enjoys following Comet’s secret life
- Keeping weight steady after tube feeding may help ALS survival
- Trial, error, and toe covers: Learning to adapt in life with ALS