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Selecting the right healthcare practitioners to treat my NMOSD

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…

A new normal: Adjusting to life after an NMOSD relapse

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…

The pain of tonic spasms for those of us with NMOSD

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…

A new year brings new challenges with NMOSD

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…

How the power of visualization helps me manage NMOSD

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…

Living with NMOSD has made me feel like a double agent

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…