The Beginner's Guide to Walking - a Column by Jennifer Van Amerom

As I sat at the table across from my family, I forced an appreciative smile. But the smell of the home-cooked meal — lemon herbed potatoes, Greek chicken, and brown rice — was suddenly too much for me to handle. My husband had been working on this perfectly cooked meal…

Sometimes I stand in the shower, and time just slips by. I numbly run my fingers through my thick hair, and I’m immediately brought back to reality by the chunk of hair in my hand. Hair loss can be a side effect of several medications, including prednisone,…

Note: This column describes the author’s own experiences with Uplizna (inebilizumab-cdon). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I had a rough summer. After enduring three major attacks from my neuromyelitis optica spectrum disorder (NMOSD),…

There are 168 hours in a week. That’s quite a bit of time to accomplish life. But what if many of those hours are robbed from you? Let’s examine my schedule, for instance. I’ve worked since I was 14 years old. My first job was at McDonald’s, where I loved…

Note: This column describes the author’s own perspectives on several potential treatments for pain. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve said it before, and I’ll say it a thousand times more: Living with pain is the worst.

As I write this, it’s the evening before I start receiving Uplizna (inebilizumab-cdon) infusions, a preventive treatment for my neuromyelitis optica spectrum disorder (NMOSD). I’ll admit, I’m feeling anxious. Here’s how Uplizna works: Astrocytes are a type of cell that helps nerves work properly. On the surface of…

As summer winds down, I’m eagerly awaiting the return of fall. I love fall fashion, and I can’t wait for a break from the intense sunlight. After more than a decade of remission, my rare disorder, neuromyelitis optica spectrum disorder (NMOSD), reared its ugly head this summer, causing absolute…

Note: This column describes the author’s own experiences with preventive NMOSD medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve always been afraid of heights. When I’m looking over an edge, my palms get sweaty, my heart starts to race,…

It’s not you; it’s me. That’s a way to explain the inevitable mood swings that come with neuromyelitis optica spectrum disorder (NMOSD), but it’s not the whole story. There’s a lot to unpack with an invisible disability. We who have a rare disorder may have trouble articulating how it’s…

Recovery is a long, windy road and I am not here for it. I deserve a break after having two optic neuritis attacks in the last couple months. Each episode was treated with a five-day regimen of Solu-Medrol (methylprednisolone) infusions, and then my medical team inserted a port…