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…
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…
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…
Amyotrophic lateral sclerosis (ALS) patients who never regularly engaged in sports or physical activity have more extensive metabolic changes in the brain that likely help them to better cope with the disease’s neurodegenerative processes, a study from Europe suggests. These changes can reflect either greater metabolic activity in a…
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!” Maybe I should explain my negative association…
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