Living with ALS requires ongoing problem-solving and creativity

Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office.

When we built our accessible home over a decade ago, we put hard flooring throughout the house in anticipation that my husband, Todd, would need a power wheelchair because of his ALS. Todd and I laid bamboo flooring in the bedrooms ourselves. At that point, ALS had already weakened his arms, but he was still able to walk. He cut the bamboo planks using his chin to help push down the chop saw blade, and he coached me in snapping the boards together. We laid tile throughout the rest of the house, and between the tile and the bamboo flooring, we had transition strips that were about 1/4-inch high.

The transition strips weren’t an issue when Todd was walking, nor when he was driving his wheelchair with a joystick. Their height became more of an issue when he started using a head array to control his chair, and especially after his neck weakened. For the past couple of years, when he moved between rooms, the transition bumps jostled his neck and occasionally sent him careening into a door or door frame.

We put much thought into the design of our accessible home. We knew that some features, such as the roll-under sink in the bathroom, would only be useful for a time. Our light switches are relatively low on the walls, and that was helpful when Todd had some use of his arms.

We have a kitchen island with an overhanging countertop, and Todd used to eat there; he put up the foot rest of his wheelchair, pulled up to the island, and elevated his chair. Now he stays in his chair and reclines a bit, and I feed him.

It’s impossible to design the perfect house for someone with ALS because the disease continues to change and the requirements for accessibility are different over time.

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When Todd could no longer transfer out of his wheelchair and into bed or onto the toilet, we installed ceiling tracks so that we could use an electric overhead lift. We built an office addition after we started having nighttime caregivers come in to turn him at night. The latest challenge has been those transition strips.

Todd found low-profile aluminum T-molding online and ordered it. He’d hoped the project would be simple — just pulling up the old bamboo transition strips and gluing the T-molding down. But home projects are never that simple. The gap between the tile floor and the bamboo flooring was too wide. Neither the hardware store nor the flooring store had wider flat transition strips, and we couldn’t find the product we needed online.

Todd had some ideas on how we could make the narrow ones work. We added aluminum edging strips in the gaps between the bamboo and tile floors. Isaac cut the metal transition strips and the edging. I got rid of the silicone that had held down the old transition strips using adhesive remover, and I used a sander to buff the edge of the floor that had been scuffed from the old strips.

Isaac then mixed up the grout and spread it in the channel. We let that dry overnight, and the next day, I glued down the new strips. I also varnished the part of the floor I’d sanded.

Now, without the big bumps, Todd drives in and out of his bedroom saying, “This is so nice. We should have done this years ago.”

It was a small but significant modification that makes a big difference in his daily life. And now our house is perfectly accessible again — until the next challenge. Living with a progressive disability requires constant problem-solving and creativity.

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.