I was going to have a cardiac arrest. That’s what a doctor told my mum during my latest hospitalization for an infection, preparing her for the worst. My acid levels were too high, confirmed by a blood test and my struggle breathing. In his decade of experience, the doctor…

Currently used clinical scales for men with spinal and bulbar muscular atrophy (SBMA) can be easily and reliably used remotely to monitor disease progression when patients are unable to visit a doctor’s office, according to a study in Italy. The study, “Reliable virtual clinical assessment in spino-bulbar muscular…

For a boy with spinal muscular atrophy (SMA) type 2, wearing a robotic gait-training device at home led to mobility gains and enabled him to participate in new activities like games and sports, a case study has found. According to a nursing assessment, the training was well-tolerated, with only…

I hoard poems like others hoard sports trophies. It’d be an exaggeration to say that I have a poem for every emotion under the sun. But I do have ones that stick with me, that ring through my head like a chant. Take, for example, Richard Siken: “Tell me how…

The passage of time is a strange thing. A quarter of a century seems like such a long time to have been alive, yet at the same time, it’s like the blink of an eye. Somehow, as of Sept. 26 (the day I’m writing this), that’s exactly how long I’ve…

It was a normal Tuesday like any other. At least, that’s what I thought. The mundanity quickly vanished when my nasojejunal (NJ) tube unexpectedly clogged. My specific feeding tube can clog easily. It’s the most narrow tube available, which makes me more prone to…