Columns

The Reasons Why I Share Our Rare Disease Story

Is it necessary to write about my family and three children with Duchenne muscular dystrophy (DMD)? I have always felt that it is. However, sometimes, especially on social media, I am questioned and criticized when I share certain challenging aspects of life. “Why does she have to share that?”…

How I Define Love With Duchenne Muscular Dystrophy

On Nov. 27, I attended a live performance by ART:DIS musician Sky Shen, an old friend from the Muscular Dystrophy Association (Singapore) (MDAS). The show featured his recent debut EP, “Wheel You Love Me?” — a collection of songs he wrote about his experiences with…

So Long for Now: The Hawk Flies On to New Horizons

It’s hard to believe: This is the 100th column I’ve written for Muscular Dystrophy News Today. It will also be my last for the near future. “Hawk’s-Eye View” has been a part of me for the past three years, as I graduated college, completed a five-month internship at…

How Duchenne Helped My Son Learn Something New

The lights shone brightly, illuminating dancers dressed in red on the stage below. The rest of the theater was dark, save for an iPad glowing toward the back of the auditorium. I sat in the dark hall on a cold Saturday night in the small Nebraska town I call home.

4 Things I Never Worried About Before Duchenne

Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all of these concerns have in common? Unfortunately, they’re things I never…

How I’m Destressing My Life With Duchenne

Adult life is overwhelming. There’s so much to do. You have to hold down a job, pay rent or mortgage, prepare for retirement, spend quality time with those you love, learn new skills, find time for rest, and pursue a hobby or passion. Then add Duchenne muscular dystrophy on…