Columns

How my sons’ DMD progression has changed my outlook

In the past 12 months, our oldest daughter got married, our oldest son moved across town into a college dorm, another son started his final year of high school, and, most significantly, I returned to full-time work outside the home. Life is drastically different for our family than it was…

Even with hearing aids, I still have difficulty in group settings

Facioscapulohumeral muscular dystrophy (FSHD) primarily affects muscles in the face, scapular region, and upper arms, hence the name. Progression is different for everybody, but the condition can eventually affect most, if not all, muscles in the body. As an additional “bonus,” FSHD also can cause nerve deafness, a condition…

How I measure my quality of life as someone with LGMD

Since I began writing for Bionews, the parent company of Muscular Dystrophy News Today, I’ve connected with many people living with chronic illness outside of my “comfort community” — those with forms of muscular dystrophy (MD). While I live with limb-girdle MD, I have many friends…

When art and advocacy meet onstage

Last Saturday, I performed a monologue titled “Connection” at the Enabling Lives Festival here in Singapore. ART:DIS, a local nonprofit that uses the arts to support people with disabilities, organized the event as part of its BEYOND DIS:PLAY performing arts and theater mentorship program. The festival centered on a…