Whenever the topic of accessibility comes up, you can bet there’ll be great passion. We all want the right to access and partake in everything beautiful in life, yet so much of the world is unreachable to those of us with disabilities. In this column, I introduce my alter…
Columns
Living with Duchenne makes a lot of things difficult, including socializing with other people. Throughout my life, especially as the disease has progressed, it’s gotten harder to relate to people without physical disabilities. Even with the added difficulty, I’ve succeeded socially by carefully choosing the people I surround myself…
Come on! Is it essential to set goals in life? Do we need them? How can those of us who deal with a muscle-wasting illness push ourselves appropriately and live life to the fullest extent possible? I can tell you that it’s easy to fall into inaction if we…
In fifth grade, it was hard for me to grasp why some people could play handball, run, and join the flag football team, but I couldn’t. I gave more weight than I should have to the things that I could not do. Looking back, I’m not surprised I thought that…
Welcome to my first column at Muscular Dystrophy News Today. Let me tell you a little about myself. I turned 60 in January and have been dealing with muscle loss symptoms since I was 47. When I first noticed the symptoms, my form of muscular dystrophy had not…
Initial misdiagnosis is a common experience of those living with chronic illnesses. Many diseases have similar characteristics, and during the process of elimination, patients can receive an incorrect diagnosis. In previous columns, I have written about my early developmental delays. I’ve shared my tips for teachers…
Columns
The Art of Asking for Help
My mom used to shake me awake in the morning, cook me breakfast, and send me off to school with a packed lunch. She made sure I took all my pills, ate vegetables, and had consistent physical therapy. My dad and some teachers acted as my arms and legs to…
It’s fitting that I start writing my first column as I begin my next major life transition. I graduate from the University of Southern California (USC) in May and start a journalism internship in Washington, D.C., in June. I’ll be moving from the home I’ve made on the West Coast…
The time when a girl’s body matures into that of a young woman isn’t how it’s portrayed in the movies — at least it wasn’t for me. I didn’t celebrate it by jumping up and down for joy. I wouldn’t have even if I could without ending up…
A few weeks ago, I attended the Los Angeles Abilities Expo for the first time. Because I am now a moderator for the Muscular Dystrophy News Forums, I thought it would be a great opportunity to inspire some topic discussions. My mom attended a few Abilities Expos in the…
Recent Posts
- Ahead of this year’s MDA Conference, association’s CEO speaks of ‘hope’
- A blind date with a book encourages me to dust off my social life
- New research reveals protein pathway that can slow muscle repair
- Dreaming of solutions to the Olympic-sized challenges of FSHD
- Roche halts development of satralizumab for DMD bone health