Columns

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…

I realize that having a full-time job as well as Duchenne muscular dystrophy can be challenging. Balancing my time between self-care, including stretching and doctor’s appointments, and work can be physically and emotionally draining. That’s why you must find a job that is a good fit for your situation.

A recent cold front has swept through the U.S. As the snow and rain arrive, they bring problems for my skin. The epidermis, the outermost layer, becomes dry, cracked, and irritated. If like me you experience issues with your skin in the winter months, I’d like to share my go-to…

Many of you who follow my column know that I focus on how those of us with a disability stay strong mentally and physically. I have also written about advocating for ourselves as patients and effecting positive change in society. I will turn 61 next month. I began…

Power chair use can feel like a burden. Most people I hang around don’t use a wheelchair so it makes me feel out of place. I also have to find alternate routes to get into places like restaurants and offices, which is inconvenient for all who accompany me. However,…

It’s over a month since my gallbladder surgery, and I couldn’t be happier with my healing process. I previously wrote about adjusting to life after gallbladder removal and mentioned using supplements to regulate my digestive system. In this column, I share a review of my experience with those supplements.