Taking pleasure in the ‘normal’ activities we can still do

Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…

A gene therapy aimed at stabilizing connections between motor nerve cells and interneurons — a type of cell that regulates motor nerve cell activity — eased motor dysfunction and promoted motor nerve cell survival in a mouse model of amyotrophic lateral sclerosis (ALS), according to a study by European…

Were you able to watch the recent Paris Olympics? I did, and I’ll admit I tuned in nearly every day. But I wasn’t always such a die-hard fan. Oh, I used to look forward to watching them — until I was diagnosed with ALS in 2010. Abruptly, I felt…

People with higher levels of certain metals in their blood and urine are more likely to develop amyotrophic lateral sclerosis (ALS), a U.S. study reports. Findings also suggest that, among ALS patients, higher metal levels linked with significantly poorer long-term survival. “By measuring [blood] and urine metal levels, we…

A brain-computer interface allowed Casey Harrell, a 45-year-old man with amyotrophic lateral sclerosis (ALS) whose disease had made it nearly impossible to speak, to communicate through a computer that used his own voice. Harrell’s experience in the ongoing pilot BrainGate2 clinical trial (NCT00912041) was described in the study,…

I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and…

A researcher at Penn State University has received a $250,000 grant for an innovative project that seeks to identify and develop small molecules with the potential to protect nerve cells in neurodegenerative conditions such as amyotrophic lateral sclerosis (ALS). The grant was awarded by the nonprofit Critical Path Institute…

A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…

Both beneficial and neurotoxic forms of the mineral selenium were increased in people with SOD1-associated amyotrophic lateral sclerosis (ALS) after six months of treatment with Qalsody (tofersen), a report shows. The elevations, which have been linked to ALS previously, could reflect a change in the antioxidant status of…

Changes in how the SOD1 protein associates with metal molecules seem to be key for how mutations affecting this protein drive amyotrophic lateral sclerosis (ALS), according to a study using a novel imaging technique. Findings represent “a very early step towards” new ALS treatments, while also showing “an exciting…