Daily living

I’ve always loved driving, especially highway driving late at night. Watching every dash on the road zoom by with the hum of the car is both an exercise in concentration and a form of meditation. I was once an occasional smoker (it was short-lived), and I’m embarrassed to admit…

Living with neuromyelitis optica spectrum disorder (NMOSD) and resulting disability can make it hard to find and keep employment, according to a small U.S. study that nonetheless involved patients from more than a dozen states. Group discussions with 20 people with the rare autoimmune disease — of varying races…

My family and I always laugh about my inability to keep plants alive. In my defense, if something isn’t hollering at me for attention or sending me email reminders, I can’t be responsible for watering it. I have never described myself as the nurturing type. However, I am competitive, so…

Ad Scientiam is developing new digital biomarkers of neuromyelitis optica spectrum disorder (NMOSD) that may allow continuous and remote monitoring of patients’ symptoms over time. The Paris-based software company announced the program launch along with a similar one for people with generalized myasthenia gravis, another rare autoimmune…

I could feel the discomfort in my throat start to build. Despite how often I cleared my throat, I couldn’t make the feeling disappear. Next, I tried a large glass of water, but the sting with every swallow confirmed my worry: I’m sick. As a neuromyelitis optica (NMO) patient…

I sometimes joke that if I had served in the military, I’d win diversity bingo. As a minority woman with a disability, there are many boxes to check off on a self-disclosure form. I am self-absorbed, though, and it’s time I do better. Within the rare disease community, many patients…

When was the last time you Googled your name? When I do it, I find my column here at Neuromyelitis News. My work as a post-secondary teacher is rewarding, but it’s also important to demonstrate my expertise. That’s why many of my students search for my professional profile…

What do you do when you’ve run out of choices? That’s where I found myself in May 2020. After living attack-free for 10 years, I was stunned when I found myself dealing with a surprise neuromyelitis optica (NMO) attack. It wasn’t until the end of that summer that I…

The phoenix is my spirit animal. Out of the ashes it rises, and a new self is born. That’s how I felt after my neuromyelitis optica (NMO) diagnosis, and it’s how I feel every time something changes with this disease. Reinvention is important to my survival, both physically and…

In the weeks between Thanksgiving and Christmas, I usually spend some time thinking about my loved ones and what they mean to me. This year, I thought I’d share a love letter to my husband of 12 years, Mike, in hopes that other neuromyelitis optica (NMO) patients might relate.