Columns

Adventures with My Mobility Scooter

They’re boring, slow, and only for old people! That’s what I told my husband when he first suggested that I consider using a mobility scooter. Like so many who live with ALS symptoms, weak muscles in my lower legs limit my mobility. At home, I rely…

Desperate Times Lead to Other Measures

“Brute Force and Ignorance” That is the title of a song, written by the late Irish bluesman Rory Gallagher. It also is a fair depiction of the human, knee-jerk reaction to a seemingly unsolvable problem, such as banging on the television to address erratic reception or kicking the…

New Projects Help Me to Find Purpose

Last week was an exciting one for me: The website I created went live. Working on this special project was an entirely new experience; it turned out to be a challenging one, but from beginning to end it gave me a sense of purpose and value. Why did…

A Tribute to My ALS Village People

“I get by with a little help from my friends.” Or, in my case, A LOT. Two weeks ago, I discussed the ALS village. Last week, I wrote that I’ve survived 12 years since ALS darkened my doorstep. The latter is not possible without the former.

My Answers to Basic ALS Questions

I have ALS. That awareness has prompted a series of rapid-fire questions. While many of us would describe existence as being comprised of multiple chapters, I now have two distinctly different lives. Prior to ALS, I had led an unremarkable life largely characterized by good fortune. Some of…

Schoolin’ Google in ALS

Do you speak with an “ALS accent”? I know I do. Fortunately, my family and close friends have learned to translate my slow, slurred words into meaningful conversation. However, to the Alexa device that lives in our back bedroom and the Echo Show that sits near me, my ALS…

In Terms of Care Support, It Takes an ‘ALS Village’

“It takes a village to raise a child.” That African proverb is a testimony to the primary, secondary, and even cameo influences that factor into the sustaining, nurturing, and ennobling of a human from infancy until independent adulthood. When done properly, a gradual lessening…

Closing the Gap Between Self and Care

Just mention the term self-care in any conversation and you’ll soon have many different definitions. It can be medical, describing how patients with a chronic disease are taught to self-manage their illness. Or self-care can mean the pursuit of personal wellness and a healthy lifestyle. And we’ve all…

First, We Must Answer the Key Question: What Is ALS?

It’s complicated. That trite, two-word sentence has become, in the age of social media, the go-to characterization of any couple whose pairing defies analysis. In the best case, after a period in which their union damages one (or both) of them, the parties agree to go their separate…