Everything in our lives is difficult, from the things we need to do to survive to the things that we love to do. That doesn’t mean we live a bad life. I’ve been reading some columns on SMA News Today recently for inspiration and…
Columns
Just a couple of years ago, I knew little to nothing about cystic fibrosis (CF), a genetic disease that affects approximately 30,000 people in the United States alone. My perspective is wildly different now that I have friends and co-workers with CF. I’ve learned…
Life is typically made up of occasional, seemingly random thuds. Thuds are moments when we sit up and take notice. We don’t usually know what we’re noticing, but there is no mistake that thuds are significant. The first thud, as it relates to this story, occurred when my…
Ella has been singing with the Young Naperville Singers (YNS) for a few months now. Her singing voice continues to improve as she gains confidence. She sings around the house, while getting dressed, and in the shower. The kids at YNS have been practicing…
One would think it might be easier to get a lifesaving medication, but it’s not. I pursued Spinraza (nusinersen) for a time, only to stop. I’ve been keeping quiet about it because what if I don’t get it? It’s possible, even though I…
My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond to dozens of messages on a typical workday. This is not normally a problem, but for some reason, I…
I’m staying indoors more and more on Halloween. The cold is taking an increasingly large toll on my body. I roll through the neighborhood with the younger members of my family when the weather is unseasonably warm, but that doesn’t often happen in northern Indiana. Instead, I’ve started passing…
In this season of giving thanks, I keep reflecting on the importance of gratitude. Gratitude greatly impacts our lives, but as someone with SMA, I’ve found the concept easier said than done. At the risk of sounding harsh, on some days I feel as though there is absolutely nothing in…
I’ve been working with elementary school kids for 19 years. Every fall, I catch a cold, but the illness is usually short-lived. However, the Casten household isn’t so fortunate. Two weeks ago, my wife, Lindsay, caught a cold, and she’s still fighting it as I write…
Progression is an odd thing. I find it difficult to measure the progress I’ve made in life. People my age, people I went to school with, are getting married, having babies, and buying homes. But my progression has always looked different.
Recent Posts
- For SMA children, early start to therapy may help with swallowing, eating
- Guest Voice: Helping my son live his best life with SMA is an honor
- Blood biomarker ratio may track Spinraza response in SMA children
- Would it be a ‘tale as old as time’ if Belle were a person with a disability?
- From teacher, to parent, to SMA parent, to grandparent
