The Clock Starts Ticking After an ALS Diagnosis

After my husband, Todd, was diagnosed with ALS, we went on what we thought would be our last family vacation. We flew into Los Angeles, visited friends, and toured some sites.

I took a lot of pictures — our 5-year-old daughter meeting princesses at Disneyland, our 18-month-old son rolling down a hill with his daddy outside the Getty Center, the kids playing on a San Diego beach.

We purchased souvenirs at the Birch Aquarium. Our daughter got an otter puppet, our son got a stuffed shark, and I picked out a funky, blue-and-white patterned potholder. “When I use this, I’ll remember our time with Todd,” I thought.

With a prognosis of death in two to five years, we felt a sense of urgency to bank memories. The clock was ticking.

Todd and I were like our kids at a park after I yelled, “Five more minutes!” They’d run around the playground trying to squeeze in one more go on the slide, the swing, and the sand digger.

There’s precious little time after being diagnosed with ALS. Even if life expectancy is a few years, paralysis can come sooner.

Todd and his son at Getty Center in Los Angeles. (Courtesy of Kristin Neva)

After returning from California, we connected with a couple in our neighborhood through a mutual friend. The husband had begun slurring his speech the previous January. His doctors thought he’d had a stroke, but after he experienced foot drop in July, they recognized it as ALS.

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The couple was still reeling from the diagnosis when we invited them for dinner. They walked the three blocks to our home on a warm August evening. Todd grilled chicken, and I cut up fruit and made a salad.

Because we shared their sorrow, we were able to connect in other aspects of life. We learned about how they met, the work they did, and their adult children. The man would tell a story, and his wife would interpret a few words that were particularly difficult for us to understand. She showed great affection for him, sitting by his side and gently stroking the back of his head.

Todd asked, “Is there anything you’ve always wanted to do, but didn’t have a chance?”

“Travel to Denmark,” she replied almost immediately. “He hasn’t met my family yet.”

“Then go! Go as soon as you can,” Todd urged them.

They left a month later. He walked onto the airplane for the flight there, but returned in a wheelchair. He died five months later, a little over a year after his first symptoms appeared.

His wife later told us that she would forever cherish the memories from that vacation.

In our case, the California trip was the last time we all traveled by plane. The kids wish we could visit Disneyland again — especially our son, who can only “remember” it from pictures — but it would be too difficult now that Todd’s in a power wheelchair. However, California wasn’t our last vacation.

We’ve been able to take the kids to places that are accessible and within driving distance. For spring break, we went to the Mall of America. We traveled to northern Minnesota to see Todd’s parents and spend time at the lake house.

Our time with a ticking clock has been like other days at the park when, after giving the kids a five-minute warning, I’d get a call on my cellphone or get to chatting with another mom. The kids would make the rounds from one piece of playground equipment to another, and then they’d go back through them. They were squeezing in more fun, thinking their time was limited, but eventually, the pace of their play would slow.

It’s been nine years since Todd was diagnosed with ALS, and the pace of our play intermittently slows. We almost forget that Todd has limited time. That potholder I bought in San Diego — the one I thought I would use and remember our time with him — wore out. I threw it away, and my son gave me new potholders for my Christmas gift last year.

Unfortunately, an ALS story never ends with forgetting that time is limited. There is always progression of the disease. There’s always another setback, another “five-minute warning” in the form of a sharp decline of forced vital capacity or a choking incident.

What else can we squeeze in? Family movie nights, hockey games, maybe some personal videos and letters for the kids — anything to bank the memories.

We are seizing the day, trying to have one more go at everything we love.

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