The Challenge of Finding Fun Family Activities as ALS Progresses

Family fun has gotten harder to come by since my husband, Todd, was diagnosed with ALS and the disease has progressed.

Initially, Todd could still walk, but his legs tired easily, so we needed to pace ourselves. It got increasingly difficult to go out as his muscles weakened, but it was still possible with certain accommodations.

One year the circus came to town, and we wanted to take our then 7- and 3-year-old children. I got tickets for general admission at our local hockey arena. The accessible rink-side seating wasn’t available, so I explained Todd’s health condition and asked if they could reserve seats for us so he wouldn’t need to climb stairs. They declined, so I asked if I could put up a sign reserving a spot for a “family with a disability.” They said I could try. I put signs on four seats, but I neglected to put our name on them.

When we arrived, there sat another family. I explained that I’d reserved the seats because my husband had trouble walking. “My daughter has a disability. She has hearing loss,” the dad replied. I held my breath as I watched Todd struggle to climb the steep, concrete steps to the first available seats.

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Another year, after Todd needed a wheelchair but we didn’t yet have an accessible van, we took our children to the county fair. I drove his electric scooter up and down a steep ramp into the back of Todd’s pickup truck, hoping I wouldn’t tip over.

It was easier to get out after we got his van. We’d go to hockey games and the movies, but now that Todd is using noninvasive ventilation and his neck is so weak, we’re mostly stuck at home.

We have limited options for fun family activities.

Getting creative

Todd has a simple life centered around his computer, and it’s difficult to think of gifts for him. Todd turned 52 in October, and I asked him for ideas. He suggested new wall art or a projector. The kids and I found a photograph my mom had taken of the autumn colors, and we had it printed for a large frame in his bedroom. His mom and siblings sent him cash, and Todd decided to use that to get a projector.

A lot of people have large-screen TVs, but we’ve never wanted a screen to dominate any room in our home. We usually have family movie nights in Todd’s office, watching movies on his computer monitor. Now we can be immersed in movies projected on a 6-foot-wide, pull-down window shade.

Action movies this way are riveting, like being at the theater. We notice details in sitcoms we’ve watched many times before. In “The Office,” for example, one character is playing solitaire on her computer in the background.

“Top Gun: Maverick” projected on Todd’s window shade. (Photo by Kristin Neva)

Todd keeps commenting on how glad he is that he got the projector. He’s often bored, and I’m happy to see him excited about something. It’s hard to think of ways to add excitement to our family life, so this feels like a win.

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.