MAN FATIGUED: ISTOCKPHOTO.COM/PAUL BRADBURY
According to a 2016 Centers for Disease Control (CDC) report, America is a rest-deprived nation. Whether it’s from work overload or family duties, personal electronics or personal problems, one in three adults, said the CDC report, is regularly short-changed on sleep.
Maybe that’s why fatigue among wheelchair users can be so difficult to identify and address. If just about everyone is routinely tired, is fatigue for wheelchair users something that should stand out as a priority?
Yes, for several key reasons.
The Price of Fatigue
Consumers who have mobility-related disabilities may experience fatigue from additional forces, said Jean Sayre, MSOT, ATP, CEAC, VP of R&D Clinical Development for Pride Mobility Products Corp.
“I think fatigue is naturally occurring every day due to gravity,” Sayre said. “Just trying to stay upright can be fatiguing.”
Derek Wenzel, PT, MBA, Account Manager for Sunrise Medical, believes fatigue among wheelchair users is a common problem, and one important to address.
“It is a significant problem, and the one thing that is tricky about fatigue — unlike pain or a pressure wound or an ulcer — is there’s no immediate indication to the wheelchair user client that there is something wrong,” Wenzel said. “Fatigue is more of a cumulative effect over a prolonged period of time. It will set in during the course of the day or maybe over a longer period, like over the course of a week. Then [the consumer] will maybe take time off during the weekend to recover, then do it all over again the next week.”
Fatigue can also be hard to define or identify. “It’s an uncomfortable feeling,” Wenzel said. “It doesn’t necessarily feel like exhaustion, just a level of tiredness. They’re not able to do as much during the course of the day as they would like.”
Sayre, who has worked in long-term care settings, saw plenty of clients who looked properly positioned perhaps early in the day, but not later. “You’d start someone in one position, and they looked great,” she said. “Then I’d be walking down the hallway [later] and see them and think, ‘Oh my gosh, what’s going on here?’, whether it’s from medication or natural activity during the day. [Staffers] wouldn’t always get them back to their beds, so they’d be in their chairs, trying to sleep because they’re fatiguing.”
“Fatigue can impact their independence,” Wenzel noted. “That’s the biggest thing, their independence in their activities of daily living, whether it’s their job duties or recreational activities. So it can impact them on an independence level and on a social level.”
Fatigue in Self-Propelling Wheelchair Users
Ultralightweight chair users can experience fatigue if their chairs aren’t optimally fitted and set up to support efficient propulsion.
“It all comes back to stabilizing that pelvis, because if you don’t have that pelvis stabilized, you lose everything else,” Sayre said. “A lot of recently injured [consumers] with paraplegia wear abdominal binders that strengthen their core.”
Sayre also talks to ultralight users about their backrests. “Can we build [support] into the back? We have contour supports we can use. Are you using a tension-adjustable back? It’s decent, it accommodates some things. But really, you should have a rigid back and maybe some contour supports. How much movement do you need to make, and how much support do you need to be able to make that movement?”
Some ultralight users get fatigued because their energy is being wasted. “You look at the wheelchair itself,” Sayre said. “A lot of those folding K0005s have a lot of flexing in the frame, so you lose a lot of energy. That person is wasting that energy.”
While consumers can tend to fixate on getting the very lightest-weight frame, Wenzel emphasized that proper fitting is much more critical to a good outcome. “You can have somebody in a heavier folding chair,” he said, “but if the fit is perfect, with the width, depth, seat inclination, center of gravity, back angle, [then] compared to somebody in a lighter-weight, rigid frame, but the angles are terrible, the seat width is too wide and too long, and there’s not enough inclination — the person in the heavier chair might be able to go longer and do more during a day because the setup is better. So it’s not just about the frame weight. You’ve got to consider all the other components of the chair and setup of the chair.”
Sayre, who is also a Certified Environmental Access Consultant, said she also looks for environmental causes of fatigue. “When I do home evaluations, the first thing I look at is the carpet. My suggestion is always to do a laminate or hardwood [floor]. With tile, you have grout lines and have to go over those.
“If they’re going to stick with carpeting, [I prefer] a very commercial carpeting because you don’t want that high or medium pile that makes [propelling] very difficult. I have carpet samples that I take for them to roll over. Sometimes you have to prove it to them. They don’t think it makes a difference until you show it to them.”
Wenzel also noted that fine-tuning an ultralightweight chair for the best outcomes is an ongoing process. “It’s critically important that it’s not a one-time set-it-and-forget-it,” he said. “You can get a wheelchair and have one or two years go by, then go back for an evaluation, and there could be changes in the wheelchair user, in width or depth. It’s important that consumers understand it’s not a set-it-and-forget-it.”
Consumers, he said, need to “stay in tune with your chair and in contact with your therapist and ATP, because if you’re experiencing pain and fatigue, there may be an intervention with your chair that could be made to help you.”
Fatigue in Power Wheelchair Users
Complex rehab power chair users have additional tools that can help mitigate fatigue.
“For clients in a power chair, it’s critically important that they’re using their power features because sometimes they’re not,” Wenzel said. “If they were to use the tilt and the recline power features to their advantage, they could conserve energy. That’s a big thing, energy conservation. If I’m in a chair, what can I do to conserve energy so I can do my ADLs [activities of daily living] and the job duties I need to do?”
Repositioning via tilt and recline can provide temporary relief for power chair users who find sitting upright to be hard work. “With tilt, you’re changing where the pressure is on your body, changing it to your back and posterior side of your body rather than on your bottom,” he explained. “Then recline can help open up the angle, and it does make you feel better. When you sit all day, you’re fighting gravity. When you’re sitting up all day, if you don’t have the musculature to maintain an erect sitting posture all day, you’re going to get tired. If you have the ability to tilt and recline, you can use gravity to your advantage and conserve your energy for the activities you want to do.”
“We still provide static positioning when we should be looking at more dynamic positioning,” Sayre said. “I’m a firm believer in using tilt and recline in conjunction with one another. I know some therapists use only tilt. But I believe the more positioning we can offer with recline and tilt, the more we can accommodate. We need to do a better job of teaching that, [so] a person can accommodate that fatiguing and then go back to being functional.”
Anyone who’s ever been stuck in an overly long business meeting already knows the value of being able to change positions occasionally.
“What we change instinctively when we’re sitting in a meeting — we’re changing positions, we’re leaning on our elbows on the table — we don’t allow [consumers] to do that in their chairs,” Sayre said. “But we can allow them to do that if we give them the appropriate armrests, or tilt and recline — opening up the recline and tilting back a little bit and just giving them elevating legrests. Different positioning to allow the body to rest in certain areas for less fatigue.”
It’s also important to make sure power chair users can continue to access their power seating options even if they do fatigue. “To do that and be functional,” Sayre said, “requires different accessories, like switch access and controls. I would always try to do an assessment in the morning, and then try to bring them back and do the fitting in the afternoon, because I would see such a difference in the person. In the morning, if they had a good night’s sleep, they were well rested and they had a lot of control. But in the afternoon, as time went on, they tired out. Their whole posture became so different, and this was not the same person I had seen.”
Sayre has accommodated those postural differences by offering multiple controls: a joystick to use most of the time, but a secondary control such as a head array that would still be accessible to the user once fatigue set in.
Or the intervention “can be something little, like an elbow block, a secondary positioner,” Sayre said. “You put the elbow block there on the armrest, and she knows her arm is never going to fall backward.” Even when the client is fatigued, the elbow block keeps her arm in place so she’s able to reach the positioning controls, thus eliminating the very real fear of getting “stuck” in tilt or recline and being unable to come out of it.
Sure, there’s also the option of recommending that clients prone to fatigue only use their powered seating when someone else is nearby to assist. “But that’s not autonomous,” Sayre said. “We’re trying to keep this person as independent as possible. Everyone wants to be as independent as possible.”
Funding to Fight Fatigue
Of course, seating and mobility teams seeking to help clients overcome fatigue must also fight the funding battle.
“We don’t get paid for comfort, and we don’t really get paid for fatigue,” Sayre said. “So how do you prove [the need for the equipment] and make that evidence based?”
Wenzel agreed that justification can be challenging. His suggestions included wording justifications in the present tense, rather than describing the desired equipment as a form of prevention. For instance, it’s true that an optimally fit and configured ultralightweight manual wheelchair could prevent future fatigue and all the potential problems that come with it. But the more effective justification route would be to explain how that optimally configured and fit chair will lead to better client outcomes today, rather than focusing on fatigue that might set in years from now.
So documentation might explain how achieving the optimal center of gravity, front and rear seat-to-floor heights, seat width and depth, etc., via an ultralightweight chair is better than a standard manual wheelchair today.
In that case, “You would incorporate [fatigue] and the impact of fatigue as part of the justification,” Wenzel said. “But it’s really the inability to propel a standard wheelchair efficiently: The wheel is too far back, we can’t get enough width or depth or seat inclination. That would be more of the justification for the K0005.”
A Constant Battle
Wenzel believes in helping clients to conserve energy as much as possible as early as possible — though he acknowledged that fatigue can be a tough concept to pin down.
“The important thing for the wheelchair user is to make sure they understand fatigue and that they’re aware of it and how it’s happening to them,” he said. “Because it’s not going to be the same for everybody. Whether they’re in a power mobility device or a manual wheelchair, it could be different for everybody.
“It’s tough to get wheelchair users to understand that, because there’s not an immediate reaction [to changing position]. For example, if I have pain and I’m sitting on my bottom, if I tilt myself back, my pain goes away — I get an immediate response. Fatigue is something that happens over a long period of time. Energy conservation is critical.”
Sayre said she’d like to see opportunities to assess clients and their changing circumstances more frequently.
“Repositioning is a constant thing we do, and I think people need to be reassessed if not on a yearly basis, then every other year,” she said. “That’s just a personal feeling. Think of the aging process and a little bit of modification you might need. Maybe you don’t need a whole new system, but if we catch it early enough — it could be a secondary anomaly, like a kyphosis or a scoliosis starting due to their accommodating their fatigue — maybe it’s flexible enough for us to address it before it becomes fixed or a contracture. Then we’re taking a proactive instead of a reactive approach.”
But step one might be getting fatiguing clients in a rest-deprived society to slow down enough to do a little self assessing. “As a therapist,” Sayre said, “we think holistically about not just their physical capabilities, but also their social and psychological ones. They’re all affected by fatigue, and I don’t think people even think of it as fatigue. That goes back to the responsibility of the person in the chair and the caregiver, too. They’re going to know their lifestyle the best. You know when something is intrinsically wrong with you. They need to be advocates for themselves, and we need to listen to them.
“I know I have changed in the last 20 years. We fatigue just naturally. I’m looking at that person in the chair, and that person is also aging, possibly faster depending on their diagnosis. I think five years of having equipment is way too long. Think of how much we’ve all changed in the last five years.”