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Don’t Let Awareness Get Lost on the Already Aware

“What’s the buzz? Tell me what’s a-happening, Why should you want to know? Don’t you mind about the future? Don’t you try to think ahead? Save tomorrow for tomorrow, Think about today instead.” — Andrew Lloyd Webber and Tim Rice, “What’s the Buzz,” from the rock opera “Jesus Christ…

My ‘Go-along’ Adventures Add Humor to Life With ALS

I use many strategies to keep myself engaged in life and avoid getting pulled down mentally by my ALS. Being a “go-along” is one of those strategies, and it’s a perfect partner to showing up. But being a go-along — that is, accompanying my husband on his various errands…

With ALS, I Take Time for Minicelebrations Every Week

My week has been full of projects, online responsibilities, physical activities, minicelebrations, and, oh yes, living with ALS. And while we ALS patients often complain that having our disease is a 24/7 challenge with no days off, I’ve found a way to give myself a mental break and enjoy…

My ALS Strategy for National Eat What You Want Day

Like many ALS patients who have swallowing issues, a condition known as dysphagia, I follow a regimen of what I can and cannot eat. I’ve accepted this as my new normal for a number of years now, so my emotional reaction to a friend’s recent social media post caught…

The Straw That Breaks the Camel’s Back

A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom. On Saturday,…

Why We Still Need More ALS Awareness

Did you know that May has been ALS Awareness Month for the past 30 years? Yes, that’s right, 30 years. Some probably think ALS awareness activities began in 2014 with the ice bucket challenge. At least that’s when many first pronounced the letters A-L-S before dumping a bucket of water…