The Challenge of Finding Fun Family Activities as ALS Progresses

A columnist's family gets creative to find accessible entertainment options

Kristin Neva avatar

by Kristin Neva |

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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.

A wide photo shows a dark room where the movie "Top Gun: Maverick" is being projected onto a large window shade. A man is sitting to one side in his wheelchair, and a dog and a kid are visible to the right.

“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.


Sonovia Horace avatar

Sonovia Horace

Hi Kristin & Todd. My name is Sonovia Horace. I'm 52 years old. I was diagnosed with ALS in 2011. I no longer have use of my upper and lower limbs. My speech is not too good. I uses the Tobii Dynavox to communicate with my family and friends. I love this device. It has brought me so much joy. I've re-gained some dependency. I'm paying bills, shopping, booking flights, and emailing online.
As far as activities, I don't get out too often. I'm a renter. The apartment that I live in is not handicap accessible. I have to go down five steps to get outside. I have two sisters that take care of me. The oldest, Lynette and I live together. The youngest, Norma is a home health aide. She takes care of me in the day time. Sometimes, I have a hard time getting outside. We need assistance with getting me down stairs and outside in my manual wheelchair. I've had two men come out and accessed my apartment. They said, the steps are too steep. They would not be able to build a ramp. Sometimes, I pay guys to help take me outside. I get so frustrated. I don't want to be stuck in house. It's hard. I'm trying to take it day by day.

Carol Anderson avatar

Carol Anderson

People with disabilities like yours or even being on disability for being extremely overweight qualify for Stair lifts like Acorn StairLifts. Check into that.

Frank D'Amelio avatar

Frank D'Amelio

Great content here Kristen. My wife was recently diagnosed. I’m thinking scrabble, and a puzzle for the family X Mas gift. My wife has bulbar. Communication has become a challenge. She has full use her limbs etc so I thought scrabble & puzzles could be a good way for us as a family to enjoy our time together.

Merry Christmas everyone & Happy Holidays. :-). Stay positive. !!!

Kristin Neva avatar

Kristin Neva

Thanks for commenting!

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