Columns

An Open Letter to Duchenne Parents

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…

Learn to Rejuvenate to Really Thrive

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…

Don’t Let Duchenne Stop You from Having Fun

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…

Advocacy, MD, and Dealing with the US Healthcare System

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.

I’m Not Letting My Fear of Surgery Control My Life

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…

Experiencing the Healing Effects of Medical Marijuana

Last year, I wrote about the unfortunate side effects of the medication Lyrica (pregabalin), which I’ve been taking for my fibromyalgia pain. For a while now, I’ve considered the option of switching out my medication for medical marijuana.  I’m familiar with the use of cannabis for therapeutic…