Moist, squelching sounds filled the otherwise silent room as the sonogram of my heart was being conducted. I was lying on my left side on the slim hospital bed, at my yearly cardiovascular checkup. One of the most important tasks to ensure the wellness of…
Little Victories - a Column by Matthew Lafleur
I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good thing that while the rest of my body breaks down, my cognitive function remains the same?…
It wasn’t a comfortable feeling. With every press of my physical therapist’s tiny handheld pump, the edges of a small plastic cup seemed to pinch my skin a little more tightly. I had several suction cups placed on my arms, hips, and legs.
No. Thank you for reading this week’s column. *** Just kidding! I want to unpack that question, because it is a valid one. Plus, the answer has a pretty interesting backstory. I am a columnist without any real scientific training,…
Moving Past Unrequited Love
“It’s just hard to be around you,” she told me. She looked down. She hated these harsh words, too. Over time, I’d learn to accept them and even be grateful for her. One day, I’d appreciate how she didn’t sugarcoat her message.
I opened the door to my closet yesterday morning to pick out my shirt for the day. Most of my shirts are solid earth tones, showcasing how boring I am. As I scanned the hanging T-shirts, my eyes lingered on one. This particular shirt always seems…
Hurricane Laura Barely Missed Me
I don’t believe I’m a lucky person. But I’m relieved that the area where I live escaped massive devastation from Hurricane Laura, which made landfall in the southern U.S. last week. Videos like this show the destruction Laura caused in Lake Charles, Louisiana, just…
I’ve been thinking a lot about whodunits lately, those stories with a masked villain who is finally revealed at the end of the tale. From slasher flicks to “Scooby-Doo” episodes, much of the suspense and spookiness lies in the mystery. The veiled monsters are…
Aug. 7 was a big day. Some groundbreaking news came out in the rare disease world: the U.S. Food and Drug Administration approved a new treatment for spinal muscular atrophy (SMA) that will be available to patients soon. What is…
I’m not patient. Not at all. I think it’s funny that people with debilitating health conditions often are seen as being patient and tolerant. We seem to be superhuman, persistent, and serene in our daily activities, no matter how long they take or how much we…
Recent Posts
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help
- New FA drug nomlabofusp on track for US filing in June seeking its approval
- I am not ‘wheelchair-bound’ with FA, I am a wheelchair user
- I choose my responses when the bone-deep fatigue of FA controls my body