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…
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…
I received my mitochondrial myopathy diagnosis 13 years ago. I became involved with the Muscular Dystrophy Association (MDA) soon afterward. The organization is known for its Labor Day telethons previously hosted by the late actor and comedian Jerry Lewis. Each year, the telethon featured performances by…
Teachers must educate classes full of rambunctious, bored kids while trying to keep them engaged and quiet. Having a student with disabilities can add a whole new layer of complications to a teacher’s strenuous job. My disease caused many developmental delays, including an inability to walk until…
Managing one’s health while living with a disability requires much more than regular trips to the doctor and excessive amounts of medications. For those with disabilities, daily life can be a bit gross at times. I believe that it is good to discuss theses issues. It creates awareness…
A couple weeks ago, a blogger with mitochondrial myopathy posted an interesting piece of advice in her Instagram story: “Instead of telling disabled kids ‘You can do anything you want if you put your mind to it,’ I think we should tell them, ‘The things you are…
Get regular updates to your inbox.