Small wins matter when living with ALS

In more than 16 years of living with my husband Todd’s ALS, I’ve fought a lot of battles, and I’ve won a few. When Todd was prescribed at-home physical therapy, he was also eligible for home health aides to assist with showering. I pressed the agency to give…

Lily Sander will never forget what it was like to meet other people with neuromuscular diseases the first time she attended Muscular Dystrophy Association (MDA) Summer Camp. Living with Charcot-Marie-Tooth disease, Sander had met only one or two other people with neuromuscular diseases in her city. She was…

Specialized multidisciplinary care was associated with longer survival in people with amyotrophic lateral sclerosis (ALS), a study found. The benefit was particularly notable among people with limb-onset, or spinal-onset, ALS, whose symptoms typically begin in the limbs. Median survival from symptom onset without invasive ventilation was 44 months with…

An artificial intelligence (AI) tool called Capsule Networks can distinguish people with amyotrophic lateral sclerosis (ALS) from unaffected individuals, with predictive performance comparable to testing for major known ALS genes, according to a study. The large international research collaboration, which used data from more than 47,000 people across 13…

Delivering gentle electrical stimulation to the spinal cord can reduce the buildup of toxic TDP-43 protein clumps in a mouse model of amyotrophic lateral sclerosis (ALS), according to a new study. The specific type of stimulation used in the study is known as multisite direct current stimulation (DCS). The…

The Problem: Why Current Treatments Fall Short Neurodegeneration—including ALS and frontotemporal dementia (FTD)—happens when nerve cells die faster than the body can protect them. Most current ALS medicines slow this loss a little, but they don’t stop it. And for many people with ALS or FTD, available options are limited…

A novel treatment for amyotrophic lateral sclerosis (ALS) caused by mutations in a specific gene called CHCHD10 showed promise for slowing disease progression in a clinical trial that tested the therapy in a single individual, as reported in a new study. “I didn’t think I would see this kind of…

Measuring blood levels of toxic TDP-43 protein in astrocyte-derived extracellular vesicles — packets of cellular material released from star-shaped brain support cells called astrocytes — may help diagnose amyotrophic lateral sclerosis (ALS), according to a new study from U.S. researchers. Tests showed that differences in TDP-43 levels inside these…

My husband, Todd, and I were having a discussion with a visitor in which our guest told us about his back pain and trouble sleeping. “You know what you should do?” Todd began. “Instead of getting out of bed, hire nighttime help, and they can roll you to your side…

ALS has changed the way I do everyday tasks. While I had to adopt some changes quickly — like giving up my driving privileges and no longer preparing meals — others crept in over time, like changes to the clothes I wear and my handwriting. What I found interesting,…