A well-oiled machine with training and checklists for ALS caregivers

“You really have everything figured out,” one of my husband Todd’s new caregivers said as I was helping her transfer him into bed using his overhead lift. We’ve been managing ALS and paralysis for a long time, and we continue to improve our processes for Todd’s nighttime care.

Clinicians view early access to palliative care as beneficial for people with amyotrophic lateral sclerosis (ALS), yet its integration into routine care remains inconsistent, a U.S. study found. About two-thirds of ALS clinicians said they had a palliative care specialist on their team, and just over half of ALS…

An experimental oral treatment from Zydus Lifesciences was well tolerated at all tested doses and showed signs of slowing disease progression in people with amyotrophic lateral sclerosis (ALS). That’s according to findings from a proof-of-concept Phase 2a trial (NCT05981040) in India that tested Zydus’ usnoflast in 24…

Nine out of 10 people with amyotrophic lateral sclerosis (ALS) who received the experimental cell therapy NurOwn (debamestrocel) in an expanded access program (EAP) following a placebo-controlled Phase 3 trial survived for at least five years after the onset of their symptoms. That’s according to data announced by…

A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment. He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to…

Living with ALS presents many challenges. For me, navigating life with a rollator, thickened beverages, and daily medication often feels like an uphill battle. There are days I wish I could go back to a simpler time, before ALS moved into my life. But since turning back the clock…

People prescribed common psychiatric medications had a higher risk of developing amyotrophic lateral sclerosis (ALS) and saw worse outcomes after a diagnosis, with shorter survival and faster functional decline, a study in Sweden finds. Taking anxiolytics for anxiety, hypnotics or sedatives to help sleep or induce calm, or antidepressants…

Dazucorilant, an oral cortisol modulator being developed by Corcept Therapeutics, significantly improved survival among people with amyotrophic lateral sclerosis (ALS) in a Phase 2 clinical trial. Despite it failing to slow disease progression, the trial’s main goal, Corcept is now seeking guidance from U.S. and European regulators to determine…

An investigational brain-computer interface has allowed a man diagnosed with amyotrophic lateral sclerosis (ALS) to speak in real time, and sing simple melodies, a new study reports. The system can detect the sounds a person intends to produce instead of their intended words, and this allowed the man…

It was seven years ago this summer that I unwittingly and unwillingly became a part of the ALS community when my late husband, Jeff, began exhibiting foot drop and slurred speech, symptoms that were worrisome enough for us to seek medical answers. His relatively quick diagnosis of ALS that…