Columns

Life can get hectic sometimes, especially when you are dealing with a rare disease such as Duchenne muscular dystrophy. However, you shouldn’t let your busy schedule prevent you from making regular visits to your primary care physician or neurologist. At routine appointments, your doctors can track your…

When I first started my search for a possible partner in life, all I asked for was someone who’d love me and understand my rare condition, mitochondrial myopathy. I never imagined I’d find a person so determined to help me experience everything life had to offer.  From the…

Let’s really get serious about what accessibility is. The website Disabled World calls it the “‘ability to access’ the functionality, and possible benefit, of some system or entity.” In short, the more people who can use the product, service, or venue, the more accessible it is. This is a…

Last week, I wrote an open letter to parents of kids with Duchenne muscular dystrophy. Now I want to offer some words of advice to those kids. Your parents love you and will sacrifice a lot for your well-being. That means you have an even greater responsibility as a…

Let me make it clear that I am not opposed to questions about my disease and why I use a wheelchair. In fact, I encourage them. I mean, we might as well talk about the elephant in the room, right?  By this point in my life, I’m basically an…

Whether your child has been living with Duchenne muscular dystrophy for years or was just diagnosed, I’m here to remind you that it isn’t the end of the world. It’s just the beginning, and there’s more hope than ever.  You have…

Some of my recent columns have been exhausting to write. This is because many of the experiences I have discussed have been difficult to actually live through. We live in a society that frustrates us. Living with muscular dystrophy is never easy, and creative living is necessary. Learning how…

Being reliant on a wheelchair is not always easy, but there’s no reason to let wheels stop you from getting out and having a good time. Modern technology and increased accessibility have opened doors. Museums, movies, and walks through the park are just a sampling of activities available…

I have limb-girdle muscular dystrophy type 2L (LGMD2L). My previous column, “I Live Creatively to Power Past Obstacles,” discussed how I live with my limitations. For me, the biggest challenge is navigating the world outside my home. But dealing with our disjointed healthcare system is also an issue.

For several years, I’ve been feeling nauseated in the mornings after I eat breakfast. Whatever food item occupies my plate that morning — be it a chocolate chip muffin with a few strawberries or an apple with a side of yogurt — inevitably upsets my stomach. Fruits of any kind…