“Plan for what is difficult while it is easy, do what is great while it is small.” — Sun Tzu, “The Art of War” In an earlier column, I noted that there was no handbook to show me how to deal with ALS. Looking back, I admit that…
Planning ahead after receiving the bad news of an ALS diagnosis
On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were a central part of his life. They’d grown up together in a home in Wyandotte, Michigan,…
I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes…
Treatment with fasudil (RT1968), which Raya Therapeutic is testing for amyotrophic lateral sclerosis (ALS), was safe and outperformed a placebo at preserving motor neurons in adults with early-stage disease. That’s according to data from ROCK-ALS (NCT03792490), an investigator-led Phase 2a trial that tested how safe fasudil is…
The use of nonpharmacological treatment — interventions such as muscle exercise, aerobics, and strength training — did not significantly ease pain among people with amyotrophic lateral sclerosis (ALS), according to a review of published data from five clinical trials. The researchers noted, however, that while “pain in ALS patients…
Although I’ve accepted the many beeps, alerts, and reminders that pop in and out during my day, I’ve also developed the habit of selectively tuning out a few of them. I recently learned that’s not a good habit to have, especially because I live with ALS and some alerts…
The ALS Association is commending the National Academies of Sciences, Engineering, and Medicine for its “groundbreaking” and comprehensive report that maps a way toward making amyotrophic lateral sclerosis (ALS) a livable disease within a decade. The organization and ALS advocates played a key role in pushing for…
Bravyl, an investigational oral therapy from Woolsey Pharmaceuticals, was safe and lowered levels of the nerve damage biomarker neurofilament light chain (NfL) in people with amyotrophic lateral sclerosis (ALS), according to new data from a Phase 2a clinical trial. The medication also showed early signs of slowing disease…
Athira Pharma has completed enrollment of the first group of healthy volunteers who’ll receive a single dose of ATH-1105, its experimental oral therapy for amyotrophic lateral sclerosis (ALS), in a Phase 1 clinical trial. The Phase 1 trial (NCT 06432647),…
After my husband, Todd, was diagnosed with ALS, we moved from Wisconsin to my childhood hometown in the Upper Peninsula of Michigan, where we built an accessible home on a small corner of my parents’ 38-acre plot. As his ALS has progressed, I’ve had to stick closer and…
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