Among people living with amyotrophic lateral sclerosis (ALS), requests to be referred for medical assistance in dying, known as MAiD, may have more to do with individual preferences about life-sustaining interventions than disease severity. That’s according to a new Canadian study showing that people with ALS using noninvasive…
Personal preferences key to medically assisted death requests in ALS
When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, there were many unknowns. We didn’t know how fast or slow his progression would be. We didn’t know the course that ALS would take in his body, or when we would need interventions like a…
A few months after my husband Todd’s ALS diagnosis, we traveled with our children from our home in southeast Wisconsin to meet up with Todd’s sister and brother-in-law at a rented condo overlooking Lake Delton in Wisconsin Dells. We had recently returned from Mayo Clinic in Minnesota, where Todd…
Enrollment of adults with mild-to-moderate amyotrophic lateral sclerosis (ALS) has been completed in a clinical trial testing PHENOGENE-1A as an add-on treatment for the neurodegenerative disease. Enrollment of about 105 participants in the Phase 2b trial (NCT07142291) wrapped up in late August, and they were randomly assigned to…
Nearly 500 people gathered in Orlando, Florida, and more than 1,900 joined them online to discuss advances in amyotrophic lateral sclerosis (ALS) research and care and community goals for the future at the third annual ALS Nexus Conference. Clinicians, researchers, patients, caregivers, advocates, industry partners, and others in the…
When I was diagnosed with ALS, my first thought wasn’t about me. It was about my children. I’m a mother of six; one of my children has passed away, and today my family and I are building a new life in New York after moving from Puerto Rico. I wondered how I would…
People with amyotrophic lateral sclerosis (ALS) who are exposed to high levels of certain pollutants in the years before disease onset have worse survival outcomes, a new study shows. The findings add to building evidence that pollution and environmental toxins can affect the course of ALS. Researchers are calling…
A buildup of microplastics in the nervous system may be linked to a higher risk of developing amyotrophic lateral sclerosis (ALS), according to a new study. People newly diagnosed with the neurodegenerative disease were found to have higher concentrations of tiny plastic particles in both their blood and the…
A newer set of diagnostic criteria for amyotrophic lateral sclerosis (ALS) was significantly more sensitive at identifying people with the disease than two older diagnostic approaches, a real-world study in Germany found. Among more than 400 people ultimately diagnosed with ALS, these Gold Coast criteria correctly identified 92.5% of…
The challenges of caregiving have been in the news lately. Last year, Dolly Parton appeared in a video following the death of her husband, Carl Dean, to quell rumors about her own poor health after the cancellation of some shows. She said, “Back when my husband, Carl, was very sick,…
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