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…
I take pride in keeping a well-organized to-do list. Each day of the week has a set number of tasks, and each task is broken down into doable actions. It’s the “I’m under control and calm” approach. It’s perfect for someone like me who lives with ALS. But life’s…
“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…
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…
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…
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…
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…
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…
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…
I always love having a good “aha!” moment, especially when it helps improve how I manage my ALS symptoms. Better yet is when I learn that what I thought was a symptom of ALS was actually an impostor, the result of something called “learned nonuse.” Here’s what happened.
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