Preserving Quality of Life When Fatigue Hits

bowls of soupIf mobility-related pain for a wheelchair user is a shrieking siren, fatigue is quieter and creeps up on wheelchair users.

Time is precious during mobility assessments, and positioning and function get prioritized. Understandably, if a client is sliding feet-first out of her power chair seat, that needs to be addressed.

But what about the physical, mental and social toll that fatigue can take, in a more insidious way?

Having Dinner Together

Jean Sayre, MSOT, ATP, CEAC, is VP, R&D Clinical Development, for Pride Mobility Products Corp. She remembers working with a client at a Veterans Affairs facility who was 20 years post injury with a C7 spinal cord injury.

“He was in a power wheelchair on an air cushion and they had some complaints about it,” she said of the client and his medical team. “As we were assessing, they said, ‘Is there any other cushion he could have? He needs to have an air cushion, but he needs support because he’s falling over.’ It was a stability issue.”

But instead of just addressing that problem, Sayre dug deeper. “I always ask them to tell me about their entire day,” she said, explaining how she assesses clients.

She learned that this veteran and his wife had not been able to spend afternoons and evenings together because of his fatigue.

“They’d never had dinner together for the last three years because he had to go back and take a nap,” Sayre said. “He would tire from about 4 o’clock in the afternoon and would have to take a nap until 6:30 or 7 p.m. And she was on medication, so she had to eat around 5:30 p.m.”

The cushion Sayre recommended improved his stability, and had a wonderful side effect. “It also kept him from fatiguing. He was not only able to sit upright while he was maneuvering his power chair, but he was able to stay up all day till 7 or 7:30 p.m., and he would then go to bed. It bought him an extra three hours a day, just by changing the surface area to provide him more stability. He wasn’t constantly fighting to stay upright. Fighting to stay upright was just tiring his body all the way through.”

Maintaining Independent Repositioning

Even when physical function has fallen off and fatigue is severe, there are still ways to preserve some independence for a client.

Derek Wenzel, PT, MBA, Account Manager for Sunrise Medical, has used today’s versatile power chair electronics to do so.

“I recently had a patient who had to push the mode button every single time to get into their powered seating features,” he said. “Quickie Power has an assignable button feature where we could program a button and all they do is press and hold that button. The chair will perform the assignments we programmed — for this particular person, it was tilt. So they didn’t have to hit mode, get the joystick, toggle through, find tilt, pull back. They could press and hold the speed button down, and the chair starts to tilt.

“If [they’re] doing pressure relief throughout the day, and [getting] really fatigued by having to reach up to get that mode button and toggle through the joystick, that’s where revisiting with the therapist and the ATP is useful. There’s so much that can be done that can really help a patient with fatigue. We can oftentimes reduce the complexity and make it easier.”

Even if driving the power chair isn’t an option, Wenzel said he looks for other options. “I’ve been on trials where I’ve tried every Switch-It component I can, and I couldn’t get them to drive,” he said. “But I was still able to set that chair up so they could independently hit a switch and reposition themselves when they wanted to during the day. That in itself was life changing for one patient I vividly remember.”

This article originally appeared in the March 2019 issue of Mobility Management.

In Support of Upper-Extremity Positioning