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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…

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…

“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 years past, I mentioned the occasion’s passing to no one. Instead, the…

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…

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…

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…

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 has ALS. When I was a brand-new mom, one of my biggest pet peeves was when strangers in a grocery store…

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 adapt to is dysarthria, or losing the ability to speak. Dysarthria feels like having a bad case of laryngitis and…

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 others on the living room floor. “This army is using dead bodies to build a wall. In war, you have to…

Whenever I’m out and about running errands, I’m aware of the possibility I’ll need to make a quick stop at, ahem, the public restroom. But though I have ALS and rely on a mobility scooter, it has never been a problem. That’s because I have a mental list of handicapped-accessible…