Daily living

I’m a prolific list-builder, and there should be a support group for people like me. From grocery lists to bucket lists, from daily to-dos to long-term goals, I have a list for nearly everything. Some might see my habit as overkill, but it’s a way of life for me. If…

Note: This column describes the author’s own experiences with Solu-Medrol (methylprednisolone) and the Homepump Eclipse. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Initially, I took a blasé approach to my most recent neuromyelitis optica spectrum disorder…

“The Hare and the Tortoise” holds a special place in my heart among Aesop’s timeless fables. It’s a narrative I revisit often in my life, finding in its conflict and resolution a source of enduring hope. For patients like me who have neuromyelitis optica spectrum disorder (NMOSD), hope…

If only I had a crystal ball that told me exactly how much time I have left, I’d know if I could spend my Sunday on the sofa or if I’d need to plan my dream trip to Indonesia and get on the next flight. When I was diagnosed…

Living with neuromyelitis optica spectrum disorder (NMOSD) often means navigating a journey filled with both triumphs and challenges. While some days I feel that I’m managing the disease well, I quietly suffer on others. For loved ones and caregivers, understanding the subtle signs that indicate a rough day for…

One of my greatest frustrations of living with a rare disease is how it affects my ability to exercise. Before neuromyelitis optica spectrum disorder (NMOSD), I enjoyed being an athlete and a dancer. When I graduated from high school, I weighed 94 pounds, and I maintained my small…

In the decade that I’ve lived with neuromyelitis optica spectrum disorder (NMOSD), I’ve connected with many other patients who say they’ve had trouble overcoming the heartache of not knowing who will show up for them in times of crisis. It’s easy to recall my similar pain when I’m speaking…

It’s been over two weeks since we were required to “spring forward” for the arrival of daylight saving time (DST). As a neuromyelitis optica spectrum disorder (NMOSD) patient, I’m not a fan. While the concept was introduced as a way to maximize daylight hours during the warmer months,…

A significant proportion of neuromyelitis optica spectrum disorder (NMOSD) patients in the U.S. lost employment, work hours, and wages after their diagnosis, as motor and visual disability and symptoms like pain and fatigue hurt their productivity, a study has found. Older patients, those using mobility aids, and those…

I’ve always been a tech nerd, falling in love with the newest tool in the Internet of Things, such as my Fitbit and phone, which can display various body statistics and control my transcutaneous electrical nerve stimulation (TENS) unit. Technology has become even more important…