Columns

February 26, 2020February 24, 2020

Facing the Rarefied Air of ALS with Dignity

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

“I don’t want to belong to any club that would have me as a member.” That sentiment, expressed by comedian Groucho Marx in 1949 about his affiliation with a ... Read more

February 25, 2020February 21, 2020

Living Well On the Rare Side

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

The other day, I was chatting with a friend about Rare Disease Day. Wait, what? You don’t know about Rare Disease Day? Well, don’t feel bad. Last year I ... Read more

February 20, 2020February 21, 2020

5 Ways to Help Kids Cope with a Parent’s ALS

Columns, Joyful Sorrow - a Column by Kristin Neva

One of my biggest concerns is how my husband’s ALS will affect our children. They were both under 5 when Todd was diagnosed and while they are growing up, ... Read more

February 19, 2020February 18, 2020

My Diagnosis Anniversary: Revisiting the Start of My ALS Journey

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

“Lately it occurs to me what a long, strange trip it’s been.” –Grateful Dead, “Truckin’“ Last month, I quietly acknowledged the 13th anniversary of my ALS diagnosis. As in ... Read more

February 13, 2020February 11, 2020

3 Ways ALS Has Changed Me

Columns, Joyful Sorrow - a Column by Kristin Neva

I’m not the same person I was 10 years ago, before my husband, Todd, was diagnosed with ALS. The brutal reality of the disease has changed me in three ... Read more

February 11, 2020February 7, 2020

Hooray! You Can Hear Me Now!

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

Sometimes you get lucky and life gives you a break, which is not always the norm for someone living with ALS. The past two weeks have been rather fun ... Read more

February 6, 2020February 4, 2020

I Am Savoring Our Limited Time as a Family

Columns, Joyful Sorrow - a Column by Kristin Neva

A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the ... Read more

January 30, 2020January 28, 2020

The Circle of Life from Motherhood to Caregiving

Columns, Joyful Sorrow - a Column by Kristin Neva

I thought my days of obsessively avoiding germs and examining poop would be over once my babies grew, but such is the circle of life now that my husband ... Read more

January 28, 2020January 24, 2020

Listen! Can You Hear Me Now?

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

Living with ALS has taught me to adapt, adapt, and adapt. Because ALS symptoms tend to change, change, and change. And one of the symptoms I’ve been learning to ... Read more

January 23, 2020January 21, 2020

We Need Allies to Fight This War

Columns, Joyful Sorrow - a Column by Kristin Neva

My son pointed to a plastic army man on the ottoman. “That guy is a sniper,” he said. “He’s taking everyone out.” He placed a soldier on top of ... Read more