The Beginner's Guide to Walking — Jennifer V.

Selecting healthcare practitioners is a daunting task, especially when you’re diagnosed with a rare disease like neuromyelitis optica spectrum disorder (NMOSD). I visited several physiotherapists, massage therapists, and dietitians before settling on my current team. Through my experiences, I’ve discovered the key questions to ask up front to determine…

When I felt the familiar heaviness in my body, I bravely faced it. “It’s OK,” I told myself. “I’ve been here before and recovered. I can do this.” As I lay in the hospital bed, a prisoner to the many doctors and specialists who checked on me throughout the day…

Last weekend, my older brother and I took a sibling getaway to Tampa, Florida, for his birthday, something we’d never done before. I was excited for the chance to connect with him, but with only three days, we had to be strategic about fitting in all of the activities. Due…

Tonic spasms come on suddenly, last seconds to minutes, and feel like an eternity. They’re a painful and daily reality for many with neuromyelitis optica spectrum disorder (NMOSD). And since my recent transverse myelitis (TM) attack, I’ve been experiencing them multiple times a day. These spasms cause intense…

As a private person, I find it easier to have an invisible disability, despite the emotional toll of appearing “fine” while feeling far from it. For years, I was able to privately manage my symptoms, and I wasn’t constantly asked if I needed help, which allowed me my independence.

Having to deal with my sixth major neuromyelitis optica spectrum disorder (NMOSD) attack is not how I wanted to end 2024 or start the new year. Unfortunately, it’s just my reality. What’s considered an attack? It’s when your symptoms hit a high point. For NMOSD patients, that may…

Wouldn’t it be nice to glide into the holiday season with everything checked off your to-do list? Every year, I set out with the best intentions to start my Christmas shopping early, write heartfelt holiday cards, and take care of mundane details like ordering a turkey from my local butcher…

I thought I had put on a brave face and spoken in a calm tone. I’d told my daughter that I’d been to the emergency department at the hospital many times before, so it wasn’t a big deal. I’d be home before her bedtime. Three hours in, she started to…

During my recent family vacation, I made sure to take several mental pictures of the beach, sunrise, and calming blue skies. Over the past 15 years of living with neuromyelitis optica spectrum disorder (NMOSD), I’ve found it important to incorporate complementary therapies such as visualization, which has gotten me…

Having a rare disease such as neuromyelitis optica spectrum disorder (NMOSD), especially when it’s an invisible disease, is like being a double agent. While some people in my life know about my health challenges, I don’t broadcast them to everyone. In such cases, withholding my NMOSD thus becomes a…

I first encountered neuromyelitis optica spectrum disorder (NMOSD) 15 years ago. Faced with the unknown after a transverse myelitis attack shut down my ability to walk, I was overwhelmed and scared. That’s when a multiple sclerosis patient gave me the best advice: “Never let them see you…

September marked 15 years since I was first affected by neuromyelitis optica spectrum disorder (NMOSD). The specific day came and went, but it wasn’t until this past week, while I was sitting on the beach in Cancún, Mexico, that I took a moment to process the past decade and…