Like many in the ALS community, I was saddened to learn of the recent death of Bryan Randall, a photographer and the partner of actor Sandra Bullock. I respected that his loved ones honored his request to keep his ALS diagnosis private throughout the course of…
Deciding when and what to share after a diagnosis of ALS
Note: This story was updated Aug. 22, 2023, to correct there are four ALS approved therapies widely available in the U.S. Diarrhea associated with a common amyotrophic lateral sclerosis (ALS) treatment could be a substantial barrier to complying with the medication, according to surveys by Napo Pharmaceuticals. While…
The years since my husband, Todd, was diagnosed with ALS have been hard for both of us, not only physically but also emotionally. I don’t think there’s a way to overcome the grief that accompanies a disease that causes ongoing loss, but we’ve found ways to live with it.
Elevated blood levels of the Cystatin C protein are significantly associated with faster disease progression and shorter survival in people with amyotrophic lateral sclerosis (ALS), according to a study in China. The protein may serve as a biomarker to predict disease outcomes in people with ALS and identify those…
People with amyotrophic lateral sclerosis (ALS) who have a more active innate immune system — the part of the immune system that acts as a first responder to threats — tend to have faster disease progression and poorer survival, a study of large data showed. Findings suggest that measuring…
Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.
Early treatment with Radicava (edaravone), an approved therapy for amyotrophic lateral sclerosis (ALS), significantly reduced the risk of hospitalization, need for ventilatory support, or death compared with delaying treatment for six months. That’s according to analyses of data from Study 19 (NCT01492686), the Phase 3 clinical trial…
Mitsubishi Tanabe Pharma Canada (MTP-CA) is teaming up with the Canadian Neuromuscular Disease Registry (CNDR) in Canada’s first real-world, evidence-generating study of Radicava (edaravone) in amyotrophic lateral sclerosis (ALS). Data are expected to provide real-life insights into the survival benefits of Radicava in the progressive neurodegenerative…
Increased accumulation of p62, a protein involved in a cellular recycling process called autophagy, in the spinal cord is associated with worse survival outcomes in people with sporadic amyotrophic lateral sclerosis (ALS), a study revealed. Autophagy is the cellular process responsible for breaking down proteins and other complex molecules…
My husband, Todd, is paralyzed because of ALS, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using a sling and overhead lift. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into…
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