Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…
Learning How to Help from 5 Phone Calls
Weight loss at the time of diagnosis appears common among people with amyotrophic lateral sclerosis (ALS), regardless of whether they have dysphagia or other bulbar-onset symptoms, a study looking at more than 2,400 patients found. A severe degree of weight loss is associated with a higher risk of death, its…
Scientists have identified molecules that enable them to study and manipulate a specific type of cell present in the central nervous system, called glial cells, at the junctions where nerve cells communicate with muscles. Understanding how these cells operate at such sites, called neuromuscular junctions or synapses, has…
Recently, my husband and I experienced a staycation of sorts — we dined on two weeks of gourmet meals without leaving our home. Although it gave my husband-caregiver a much-needed break from meal preparations and was a nice change of pace for both of us, we wouldn’t do it again.
Protocatechuic acid, a metabolite of one of the main substances that give blackberries and black rice their distinctive dark color, can extend the lifespan and reduce the progression and severity of amyotrophic lateral sclerosis (ALS) in a mouse model of the disease, a study found. The study, “…
A research project underway at the University of Rhode Island (URI) aims to help people with advanced amyotrophic lateral sclerosis (ALS) and other severely limiting disorders communicate better by interacting with a computer that can translate their thoughts. Among the consequences of motor diseases like ALS is the…
Distinct RNA patterns in a person’s blood may signal the presence of amyotrophic lateral sclerosis (ALS), a study reports. Researchers, led by Majid Hafezparast, PhD, a professor of molecular neuroscience at the University of Sussex in the U.K., discovered that certain types of non-coding RNA (ncRNA), a…
Columns
An Old Dog Teaches Me New Tricks
I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…
Three Canadian provinces — Ontario, New Brunswick, and Alberta — have added Radicava (edaravone), a treatment for with amyotrophic lateral sclerosis (ALS), to their provincial medication plans. These recent but separate actions mean that Mitsubishi Tanabe Pharma’s intravenous infusion therapy is now listed on each province’s individual public…
Columns
Oh My God — I Have ALS
The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people…
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