What friends taught us during life with my husband’s ALS

Making and keeping friends did not come naturally to me in childhood. I was shy, and my introversion and love of books often kept me curled up on the couch reading while other neighborhood kids biked and played tag. I craved the interactions I noticed other kids having,…

When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent “Freakonomics Radio” podcast episode, “Swearing Is More Important Than You Think.” The host, Stephen Dubner, is struck that there seems to be more swearing now than…

It’s been nearly three years since the HEALEY platform clinical trial started and, so far, two promising experimental treatments for amyotrophic lateral sclerosis (ALS) have been identified. Both potential medications — CNM-Au8 and pridopidine — are headed toward Phase 3 clinical testing, while testing has been ruled…

Treatment with the investigational therapy DNL343 was generally well-tolerated among people with amyotrophic lateral sclerosis (ALS) in an early clinical trial, and biomarker data from the trial suggest that the therapy is working as intended. Results were presented at the annual meeting of the American Academy of Neurology (AAN),…

The U.S. Food and Drug Administration (FDA) has granted conditional approval to Biogen’s tofersen, now named Qalsody, for the treatment of amyotrophic lateral sclerosis (ALS) associated with mutations in the SOD1 gene. The decision, which marks the first conditional approval for ALS in the country, comes about eight…

Imagine this: A 71-year-old ALS patient riding a mobility scooter visits her local furniture store. I mean, what can go wrong? Well, a whole heck of a lot can go wrong, at least according to all the worst-case scenarios that flooded my mind. From the comical to the complete…

A new technology powered by artificial intelligence (AI) may one day help doctors diagnose people in the early stages of amyotrophic lateral sclerosis (ALS), according to data from a clinical trial. Developed by Pison, the technology was able to detect involuntary muscle twitches, or fasciculations, and changes in…

As I face another 30-day stay in a health facility, what may be a pipe dream keeps bobbing around in my head. I’d love to see an opportunity for health aides to become certified in the care of ALS patients. This appeal is not a call for a formal…

Arrowhead Pharmaceuticals will seek permission later this year for the first clinical trial of ARO-SOD1, its RNA-based therapy for amyotrophic lateral sclerosis (ALS), according to a company press release. Further details about Arrowhead’s plans for testing its investigational RNA therapy are expected at a company Research and…

Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office. When we built our accessible home over a decade ago, we put hard flooring throughout the house in anticipation that my…