Columns

I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column is published.  Since there is no access point for the…

Editor’s note: Columnist Michael Casten caps his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Three generations of family. Six people, all affected by SMA, brought me to their thoughts. I sat…

Growing up, I only had a handful of friends with SMA. As a result of my desire to be “normal,” I didn’t show much interest in engaging in any kind of disability community. Aside from participating in the annual Muscular Dystrophy Association (MDA) Muscle Walk fundraiser with…

I deactivated my Facebook account a while back, so I’m trying to be more active on other social media platforms. This is partly to keep in touch with people and partly to curate a more professional presence online. I rarely ever take pictures, but I’ve always…

While taking care of ourselves physically is always the number one priority, it is also mindful to nurture our emotional well-being in the same regard. Living with SMA means enduring added obstacles and challenges that can, at times, become overwhelming, and so it’s important to take the time…

Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. What is SMA? “It’s a disease that makes it so I can’t walk. As I get older I lose…

Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…

When I started grad school earlier this year, a friend told me that I could not, under any circumstances, start to psychoanalyze the people in my life. I laughed because technically we’re not supposed to do that anyway. I told her she didn’t have…

Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Henry’s the middle child and is 9 years old, surrounded on both sides by his sisters. He fits the…

Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…