How We’re Taking On New Precautions for ALS Progression

My husband, Todd, is increasingly dependent on a noninvasive ventilator as ALS continues to weaken his lungs. Over the past decade as the disease progressed, I’ve had periods of high stress before we adapted to a new normal, such as when Todd continued to drive even though he had a weak arm, or when he kept walking even after having fallen a couple times.

We’ve been in another high-stress period since Todd has struggled to breathe while being transferred in a sling in the bathroom.

Since he became paralyzed, we’ve used a sling and overhead lift to transfer him in and out of his wheelchair. For several years, he could stay comfortably suspended in the air for a bit while I or one of his caregivers cleaned him up after toileting or repositioned his chair. But increasingly, he’s struggled to breathe, and over the last year we had a couple of close calls when he stopped breathing entirely. I managed to get his lungs restarted with his cough assist machine.

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For a long time, I’d used the time when Todd’s shower aide was here to run to the grocery store or get my daily exercise, feeling confident that Todd was safe because he had someone with him. But after those incidents, I’ve stayed in the house while he was being showered, ready to spring into action.

Now the solution seems obvious: Todd needs to stay connected to his breathing support during the transfers and while on the toilet. His transfer into bed has been quick enough that it hasn’t been an issue, except for once when his lungs filled up with mucus. In any case, we keep his ventilator on a wheeled cart that sits next to the bed so I can give him immediate breathing support if he needs it.

The logistics of the bathroom seemed trickier. There isn’t enough room to move the cart around his wheelchair or shower chair. I also worried about keeping the machine secure. Not only is it expensive, but Todd depends on it too much to risk it toppling onto the floor and breaking.

Two weeks ago, I reached out for ideas on an ALS Facebook group. Someone had a cupboard near the shower, and they put the machine in it to keep it dry. Someone else kept it in a bag attached to a Hoyer lift. Several people mentioned that they use a longer hose in the bathroom. That was the tip I needed.

I attached two 5-foot hoses together with a coupling. The next time Todd’s shower aide came, I placed the ventilator in its travel bag and hung it on a hook on the wall. I stayed in the bathroom for all of the transfers as we figured out how to maneuver the hose.

The next day when I helped Todd on the toilet by myself, I simply set the machine on a sturdy bench that we have against the wall. The hose had plenty of length to stretch across the room. Last week, when the shower aide came, she managed the transfers without my assistance.

Todd says he’s less nervous with this new precaution, although he feels the weight of recognizing another step in the disease progression. But I feel a sense of relief now that we’re proactively addressing his need for breathing support during transfers.

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