My alarm went off at 7:09 a.m. I rolled out of bed and walked into Ella’s room. She lay sleeping peacefully. I went downstairs and met both dogs, who were ready to go out for the morning. I made a cup of coffee and sat outside with the…
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As I lay sideways on the operating table for my most recent Spinraza injection, my neurologist asked me about an upcoming SMA therapy. He and I like to make small talk about medical breakthroughs while a radiologist jams a needle into my neck. We were discussing…
Ella looks forward to her Spinraza (nusinersen) treatments for SMA. She knows that Spinraza helps her get stronger. And while she doesn’t like the smell of the anesthesia, she toughs it out anyway. This round of Spinraza is a bit different though. Since the onset…
When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned with the procedure than the potential benefits. The idea of letting a radiologist stick…
Let me set the scene. I’ve finished my morning routine of meditating and emptying my inbox. I scroll through Twitter for a few minutes, knowing I should get started on my column for this week, knowing I’ll feel better about myself…
I often write about my personal perspective of life, but today I want to introduce an incredible person to whom I have the privilege of being a big sister. Among the many students finishing up their final year of studies is my no longer little brother,…
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted me to have my first telemedicine conference call with my team…
Here in the Midwest, “going for a drive” is an authentic thing. When the tall grass gleams in the golden hour of a lazy Sunday afternoon, countryside rustic roads beckon people to roll their windows down, ignite the engine, and explore. In our current times, the splendor of this activity…
I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels of…
Ella has not been out of the house for weeks. She spends much of her time doing schoolwork. Every morning, her teacher has a class meeting on Zoom. Ella tunes in to get the day’s lesson. When the meeting is over, she immediately gets…
