Columns

Living Life While Taking Precautions

After three weeks of my husband, Todd, being cloistered in our home with a cold, we ventured out Saturday for Michigan Tech’s last home hockey game of the season. Our Huskies took on their archrival, the Northern Michigan Wildcats. Games between the two teams usually sell out because…

Stepping onto the ALS Rating Scale

Oh, how I wish living with ALS weren’t so murky: We don’t know its cause, we don’t have a cure, and we measure symptom progression by way of 12 questions. I can’t do anything about the cause or cure, but I’m up on my soapbox (the one with the…

Facing the Rarefied Air of ALS with Dignity

“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 particular social organization, was exactly my reaction in learning of…

Living Well On the Rare Side

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 missed it, thinking it was just another ho-hum awareness event. But I’ve learned the value of events such as this…

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

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, their father continues to lose strength. A couple of years into the disease, I was fastening Todd’s seat belt as our…

3 Ways ALS Has Changed Me

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 ways: 1. I swear more I’d never done much swearing. When I was 15, I had just gotten my driver’s permit…

Hooray! You Can Hear Me Now!

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 for me, thanks to a suggestion that I begin using a portable microphone. I have written about my challenges…

I Am Savoring Our Limited Time as a Family

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 beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…