3 ways we bring energy to our marriage while living with ALS

How we keep things interesting despite my husband's progressive disability

Kristin Neva avatar

by Kristin Neva |

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Before my husband, Todd, had ALS, our marriage had a normal rhythm to it. He’d go to work, and I’d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks and rode bikes. We went to the beach and the park, and we went on vacations. We got together weekly with a small group of other couples from our church, and we had people over for dinner.

After the ALS diagnosis and as the disease has progressed, we’ve had to say goodbye to many of those things we cherished. Todd had to quit working, and I became his caregiver. Our kids are now teenagers and have their own activities. Todd is paralyzed and uses a noninvasive ventilator. He and I are at home together, all day, every day, and life can feel mundane. Todd sometimes counts the hours until bedtime because he’s so bored.

Because life will never again be what it used to be, we’ve had to find new ways to bring energy to our marriage. Following are three ways we do that.

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It’s difficult to plan for the future with the varied progression of ALS

1. We watch shows together.

We watch movies and documentaries on the weekends, but TV shows are short and easy to work into our daily routine. We’ve watched all of “The Office” and “Monk.” “Frasier” kept us busy for over a year because it ran for 11 seasons. We’ve since had trouble finding anything we liked, but last weekend we added a new streaming service that’s given us access to many old seasons of HGTV shows, such as “House Hunters International.” It’s fun to vicariously explore new places in other countries, although sometimes a little bittersweet.

2. We compete at The New York Times’ daily Wordle.

This popular online puzzle allows six attempts to guess a five-letter word. When a word is played, the letters change color to indicate which ones are in the final answer.

Todd was an analyst in his professional career, so he used his HeadMouse to create an Excel tool with a list of every five-letter word in the English language and filters to include or eliminate letters. He doesn’t use that tool when we compete, but he checks to see how well we played. And he used it to analyze the best words to play.

He used to almost always beat me, so I started playing the same first two words that he typically plays. The other day over breakfast, I told him that Wordle was disappointing.

He said, “Hmm,” and I said no more, holding back a smile as I realized my comment might be influencing his course of play.

Later, after I got him set up on his computer, he shared that he got the Wordle in five tries.

“I got it in three!” It’s a rare day when I get the answer in fewer turns than he does.

He hadn’t played his usual first two words. “You said it was disappointing.”

“Yeah, because it was too easy!”

3. We visit with other couples.

For a while, Todd’s lungs didn’t function well enough to carry on much of a conversation. But now that he’s progressed further and requires noninvasive ventilation, he’s found that he doesn’t get winded when he talks with the Astral ventilator on. So it doesn’t add to the stress of our lives, we usually get takeout.

We connect well with the couple who visited us last weekend. They deal with difficult things in their life, too, although they’re very different from our problems. We don’t spend time dwelling on that, however, and we have broad-ranging conversations.

Our friend, who’s an instructor at our local college, discussed her excitement for her upcoming lecture on “Moby-Dick.” She loves Herman Melville’s novel, but has had trouble finding others who share her passion.

“I’ve read it,” Todd said. After he stopped working due to ALS, Todd frequently visited my great-uncle in a nursing home to read to him during his final months. “He passed away halfway through ‘Moby-Dick,’ so after that, I skipped the whole whaling section and read the end,” Todd said. It was fun to hear he and our friend discuss the beauty they found in the classic novel.

Although our life is not what we imagined, we’re still finding ways to connect and enjoy our time together.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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