Page 9 - Mobility Management, September/October 2022

whatever you want to up top, but if you put it on a mobility base, manual or power, that doesn’t take into account their environment and how they’re driving and where they’re driving...? They’re going to move, and it’s going to compromise their posture.”
That means examining the wheelchair’s suspension and its ability to help its rider to maintain the best possible position. “Anything you can do to lessen the shock and the vibration coming from the ground before it gets to them, I think, will allow you to have better outcomes with everything you’re trying to do. And it’s not always the big curb [that moves people out
of position]. It’s not always the rocks. It’s the constant repetitive cobblestone, bricks, [vibrations] that always are just going right up to the body. And they’re doing things in a micro or small way to maintain their posture or adjust their position to stay upright, and that fatigues them very quickly.”
The results can definitely impact their ability to operate their chairs. “They slide down the chair. The head array is farther away. The [sip-and-puff] straw is farther away. Even those basic abilities to access their drive controls [are compromised]. And what is it doing internally? It’s making it hard for them to breathe if they’re collapsing, if their diaphragm isn’t able to move as freely. It may make it more difficult to swallow because of the posture that they’re in. So there are all kinds of little things that the vibration
and the environment do over time or over the course of the day that we may not see, but they’re feeling or experiencing.”
Considering Their Caregivers
Peterson also noted that caregivers need to be included in palli- ative care conversations. “From a caregiver standpoint, whether that caregiver is a loved one or an aide, physically it’s very taxing to do transfers,” he said. “The more you transfer, the more oppor- tunities there are for problems to occur: falls, drops, skin being brushed against surfaces to cause pressure.”
Many ALS patients eventually prefer to sleep in their power chairs rather than transfer to bed. “I think for someone with ALS who may be on a ventilator, that transfer and worrying about what’s going on with your ventilator has got to be incredibly stressful,” Peterson said. “Is it ideal that people sleep in their chairs? No, it’s not. But [maybe] that’s where they are, and they’re comfortable and they’re safe. It gives everybody a little bit of calm and peace of mind.
“I think we really have to look at caregivers because they go through a lot that we don’t necessarily understand. Anything we can do to make the consumer more comfortable overall will give you a better long-term experience or long-term outcome. Think about what the family is going through already.” m
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MOBILITY MANAGEMENT | SEPTEMBER-OCTOBER 2022 9 9/16/21 11:41 AM