Life with Duchenne muscular dystrophy is far from predictable. We can’t foresee how our bodies will change. When I turned 18 (I’m 23 now), I didn’t know that five years later, I would need help showering and getting off the…
As we finish the first month of 2020, I keep thinking about how time flies as I get older. There are many theories for this phenomenon. For me, it’s all in the math. When I was 10, a year was 10 percent of the time I’d lived on this…
As a kid, I found it difficult to bond with other children with muscular dystrophy (MD). As a young teen, I often compared myself to others — including those living with MD. The invisibility of my disease often made me feel like an outcast. The rarity of my type of…
The other day, I was sitting in Haute Cakes Caffe chowing down on a carnitas breakfast burrito, when an older woman sitting next to me said something that took me by surprise. “You have a really great outlook,” she said, as I motored up to grab a to-go box…
My experiences writing this column over the past year have been fabulous. But it was daunting at first to put pen to paper to capture what so many people feel. My first column talked about starting something new and the excitement this brings. But the reality is that the…
Most people with a chronic illness inevitably learn to expect the unexpected with their health. No matter how meticulously I attempt to plan around my body’s needs, mitochondrial myopathy sometimes has a different agenda. I lose control over my body and feel as though I must bend to the…
Stretching has been part of my daily life since I was diagnosed with Duchenne muscular dystrophy (DMD) about 17 years ago. Every night, my parents would reserve 30 minutes to do passive stretching, and I saw a physical therapist regularly. We didn’t do it because we wanted to, but…
I sometimes wonder how I will survive Chicago winters going forward. Winter is not a problem for some people with neuromuscular disorders. But for those of us in colder climates, it’s a big deal. The reality of my city’s wet and slippery conditions means I need to live creatively…
The world of employment and disabilities is difficult for me to understand. Readers of my column have always been good about giving feedback. I’d love your input on this subject because it is so important. The numbers don’t make sense to me. As a society, we can do better for…
Finding the perfect Christmas gift requires listening intently to the recipient’s wants and needs. This year, the social media team at Muscular Dystrophy News Today asked followers what would be on their wish lists to make their lives easier and more comfortable. These recommendations are sure to put a…
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