Columns

February 25, 2021February 22, 2021

It’s Important to Share Our ALS Stories on Rare Disease Day

Columns, Joyful Sorrow - a Column by Kristin Neva

I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. ... Read more

February 24, 2021February 23, 2021

Like It or Not, My Steak Is Rare

Columns, Notes From the ALS Front - a Column by Rick Jobus

“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this place is really terrible.’ The ... Read more

February 23, 2021February 19, 2021

Lessons I Learned From My AFOs

Columns, Living Well with ALS - a column by Dagmar Munn

I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It took persistence, but I can now step into my white, molded plastic ankle-foot orthoses and ... Read more

February 18, 2021February 17, 2021

Facing Winter Together and Fighting as Best as We Can

Columns, Joyful Sorrow - a Column by Kristin Neva

It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a mild January with many sunny days, the first two weeks of February made up for ... Read more

February 17, 2021February 15, 2021

We’re Not Getting Older, We’re Getting Luckier

Columns, Notes From the ALS Front - a Column by Rick Jobus

“Ride a painted pony, Let the spinnin’ wheel spin.” Recently, I had a flashback to those lyrics by David Clayton-Thomas and recorded by the band Blood, Sweat & Tears. They ... Read more

February 16, 2021February 12, 2021

Positive Rituals and My Evolving Morning Routine

Columns, Living Well with ALS - a column by Dagmar Munn

Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was ... Read more

February 11, 2021February 8, 2021

An ALS Diagnosis Changes Our Perception of Life

Columns, Joyful Sorrow - a Column by Kristin Neva

Some people take a long time to get an ALS diagnosis, which is a drawn-out, stressful journey. Our story was stressful in a different way, in that my husband’s diagnosis ... Read more

February 10, 2021February 8, 2021

ALS Ain’t Elvis, but It Sure Can Seem Like It Is

Columns, Notes From the ALS Front - a Column by Rick Jobus

The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence of Elvis Presley. Despite the first-glance outlandishness of the song’s premise — fittingly, the single ... Read more

February 9, 2021February 5, 2021

3 Things I Would Do Differently If Diagnosed Today

Columns, Living Well with ALS - a column by Dagmar Munn

I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it ... Read more

February 4, 2021February 2, 2021

Because of ALS, I’m Doing Things I Never Envisioned

Columns, Joyful Sorrow - a Column by Kristin Neva

When I met my husband, Todd, I was a renter, so I didn’t need to worry about home maintenance. I drove a 15-year-old Oldsmobile Cutlass Ciera, and I didn’t do ... Read more

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