Page 7 - Mobility Management, September/October 2022

“Pediatric Palliative Care: How Early Should [It] Be Planned?”, said, “Children with cerebral palsy and other neurologic condi- tions benefit from being referred to palliative care as soon as [the] diagnosis is made.”
Improving quality of life can take on many forms. Johns Hopkins Medicine’s Neurology and Neurosurgery department has an ALS and spinal cord injury palliative care project that aims to make gaming more accessible. “The mission of this software and hardware is to provide patients suffering from limb paralysis, but who still possess residual movements (ocular, finger), with games that map their movement onto a world of rich motor dynamics and physics. Ideally, we wish to project a patient’s residual movement into the fully dynamic movement space of a creature or vehicle. This is intended to give them back the visceral and plea- surable feeling of acceleration, velocity and skilled movement.”
A Palliative Care Role for CRT
So if adaptive gaming can be part of palliative care, what role can CRT play in “focusing on quality of life for them and their family,” per NIA’s definition?
Brad Peterson is VP of Sales for Amylior, manufacturer of complex powered seating and power wheelchairs.
“We’ve talked about comfort and how important it is, no matter how you define it,” he said. “I think it’s pretty simple: Someone who’s not comfortable is going to move themselves however they can to a position of comfort. Or they’re simply not going to use the technology that you’re trying to get them to help
them be more functional and independent.
“Furthermore, a caregiver who’s dealing with someone at the
end stages of a chronic long-term serious disease who’s in pallia- tive care — they’re probably not going to transfer their loved one into technology that feels uncomfortable or that makes the loved one say, ‘I really don’t want to get in this chair, I’m super uncom- fortable, I’d rather stay in bed today.’”
And while Peterson acknowledged the Funding sources don’t pay for comfort premise, he contended that comfort is, practi- cally speaking, still critical. “There are all kinds of ways you can subjectively look at comfort. But I think comfort is important because it is a linchpin to many of the other things we’re trying to do functionally, with a seating and positioning and a power mobility or manual mobility assessment.
“We want people to be functional, independent, safe from pressure injuries, all these things that we talk about in seating. But if they’re not comfortable, you’re not going to get those outcomes that you’re looking for. I’m a firm believer in that and I’ve seen it.”
The Effects of Discomfort
Anyone who’s been stuck in the middle seat of a long-haul flight — or even just tried to sit in a hotel ballroom chair for a long PowerPoint presentation — knows how discomfort can creep
in and disrupt. If you’re able to fidget, shift your weight, stand, reposition yourself, you do — a lot. But what if you can’t?
“Maybe you tell your caregiver, ‘Just put this pillow on top of
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