If I didn’t know that the endgame for physical therapy is to be fully functional again, it’d be easy to come up with excuses to just stay in bed right now. Physical therapy isn’t fun or easy, but it is a necessary friction. Thankfully, I am…
Columns
Scheduling my own doctors’ appointments was one of the biggest indications I was getting older. I remember how I felt when I first did it about age 18. I hung up the phone feeling so grown. From then on, I had no problem scheduling all my appointments. It gave me…
In a previous column, I wrote about rideATAXIA Philadelphia and the 12th Annual Friedreich’s Ataxia Symposium, hosted by the Children’s Hospital of Philadelphia. People with Friedrich’s ataxia (FA), members of their families, and caregivers can connect with one another and learn about potential treatments at these types…
A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…
The topic of this column might be my ultimate excuse for not writing. Before I explain, I want to remind readers that I am an advocate for taking care of your health and prioritizing rest. I’m…
October is my favorite month. I love the feeling of new beginnings that comes with the crisp fall air. And I’m excited about two major Friedreich’s ataxia (FA) events that take place this month: rideATAXIA Philadelphia and the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of…
Columns
The View from My Standing Frame
As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I…
As I write this, I want nothing more than to go home and crawl into bed. Today has been longer and more exhausting than usual. I don’t write about my job often, but I did mention how significant the company is…
I often revisit a memory from eight years ago when my family and I were in a patient room at Johns Hopkins Hospital. I had undergone multiple tests, and as we waited anxiously for the results, the neurologist stepped into the room. He confirmed my diagnosis of Friedreich’s ataxia (FA),…
Columns
The Best Man Gets His Groove On
Being the best man at a wedding had its challenges. I am not comfortable being the center of attention, so it was not relaxing to give a speech at the rehearsal dinner or go down the aisle during the ceremony. But I have known since college…
Columns
Focus on Results, Not on Excuses
Once again, this weekly writing exercise is proving to be more beneficial than I ever imagined. In a sense, writing and posting my thoughts for the world to read is life-changing. It is a catalyst for tangible transformation of my habits and routines. I’m happy to…
Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological issues, heart conditions, fatigue, and chronic pain. Some patients may use mobility aids full time, part time, or not at all. Each person with…