ATP Series

The First Ultralight

So many new wheelchair users "hate" their first K0005. Can that be avoided?

mulitple pictures of the same man with different expressions

FOUR DIFFERENT FACES: ISTOCKPHOTO.COM/BOWIE15

In an educational presentation to ATPs a few years ago, Megan Blunk, a gold-medal-winning member of the U.S. Women’s Basketball Paralympic team, described receiving her first wheelchair. At 18, she had survived a terrible motorcycle accident and was finishing her stay in a rehab hospital.

Blunk said she wasn’t measured or fit for her new wheelchair, though she was asked what color she wanted. She was also asked what size she wanted. Blunk looked up wheelchairs online and discovered that the “average” wheelchair seat size was 16x16". That’s what she ordered, figuring that the wheelchair would be easy to resell when she no longer needed it.

She did end up keeping that first wheelchair, which, not surprisingly, didn’t fit Blunk well. But she didn’t realize that till she was 19, when she discovered wheelchair basketball and saw the wheelchairs that those athletes used. That’s when, Blunk told the audience of ATPs, she learned that using a wheelchair didn’t have to be painful. That propelling a wheelchair wasn’t supposed to hurt.

After the presentation, several ATPs nodded in acknowledgment of how difficult transitioning to a wheelchair typically is. “So many of them hate their first chairs,” one ATP said, as her peers agreed. “That happens for a lot of reasons.”

Listening vs. Assuming

If so many clients like their second or third ultralights more than their first ones, what makes subsequent experiences better?

Todd Richardson, ATP, Eastern Regional Sales Manager for Motion Composites, has used an ultralight for most of his adult life. On leaving rehab after a motocross accident, he got a 16x16" chair with anti-tippers, mag wheels, airless inserts, 8" casters and a 20" back.

It was in stark contrast to Richardson’s athletic lifestyle. With his first chair, Richardson said, “I had gone from feeling agile with great reactions, strong, athletic. That was really kind of defining who I was. And now I was low, square, clunky, awkward, without good balance. I felt sickly.”

He acknowledges being tough on that first chair and breaking multiple casters. During a visit to his dealer to buy a new caster, Richardson met someone with a very different kind of chair.

“Out of the background comes this legendary guy — though I had no idea — named Marty Ball,” he said. “This was 1988 or 1989. He wheels up — he was repping Küschall at the time — and he said, ‘Have you ever tried a rigid frame?’ I’m sitting here irritated because I’m buying another caster for $85; it’s my fourth one, and insurance isn’t going to pay for it. And I looked at him and said, ‘No, I haven’t.’ And he said, ‘They get around really well, they fit really well.’ And I did think it really fit him well. You didn’t see the chair, it wasn’t big and square. And he was such a nice guy that I tried it.”

Decades later, Richardson still remembers that moment. “I got in it, and all of a sudden my whole world opened back up to who I was. I felt agile, quick, with good balance, strong, because the chair actually responded to my input. Everything about it was eye opening. We spec’d one out, and I got one of those immediately following. It was absolutely life changing.”

Richardson’s personal experiences shaped how he works with first-time wheelchair users, including his staunch belief in demo chairs… but not necessarily at his first meeting with a client.

“You gotta get in there somehow and get down to that human being level and draw them out,” Richard said about initial meetings.
“That was always my first job, to go meet the person, even if I didn’t have a demo chair. Most of the time, I wouldn’t even bring a demo chair the first time. I don’t know this person yet; why would I bring a demo? I would just get to know them a little.

“I could say, ‘How are things going so far?’ Just talk to them as a human being, peer to peer, not as a patient. That opens channels. It also helps that I was in a chair; I’m not going to overlook that fact. Because they can look at me and say, ‘This dude’s had to walk the walk, so to speak. He’s done it.’ And they’d ask me about things, and the channel was open just a little bit.”

Richardson used those openings to gather info on what the optimal chair for that client could be like. “I’d say, ‘You got injured riding a motorcycle?’ or ‘You were injured riding a horse?’ Whatever it might be. It gave me a little insight into their psyche and what they were involved in. You just try to get to know them: ‘What kinds of things do you like to do? What’s your environment at home like?’ Then you start to get in your mind, ‘Okay, maybe I’m thinking these demos and see what the PT thinks as well’. So you’re a little more focused when you do actually start to work with them. You’ve already got a little rapport. For me, that was important. If I had the time to do it that way, that’s what I really liked to do.”

Learning & Predicting vs. Guessing

Angie Kiger, M.Ed, CTRS, ATP/SMS, Clinical Strateg y& Education Manager for Sunrise Medical, acknowledged the challenges in fitting someone for a first wheelchair.

“You’ve got to think about diagnosis and about age,” Kiger said. “The first [type of client] that most people think will end up in a K0005 chair would be somebody who has a spinal cord injury that leaves them paraplegic. That’s pretty common.

“It gets a little bit stickier when you’re attempting to determine the best K0005 when you move up to a cervical level spinal cord injury when they’re a quad. There are plenty of functional quads who propel ultralights and aren’t in power chairs. It’s looking at the level of injury in trying to ‘predict’ — and I say that in air quotes because it’s hard to do — how they are going to get through and thrive or maybe not thrive post injury and rehab. Some of it can be looking at their social and emotional history, meaning beforehand they were more sedentary and they were content to hang out and play video games with their friends, versus the kiddo, teenager or adult who was the athlete or serving our country in the military or was extremely active.”

Improvements to trauma medicine and spinal cord injury treatments can also be a factor.

“You want to know how far they may come and how fast they may come in the recovery process and with their muscles regaining function,” Kiger said. “You have to think about complete versus incomplete injuries. It used to be many years ago, people would talk about completely losing function and not feeling anything below their legs. When you watch TV shows, it’s like that: all or nothing when it comes to function. That’s not how spinal cord injuries work, unless [the spinal cord] is completely severed or there’s some sort of complete insult that’s happened in the injury process.

“I think now with the life-saving techniques that we have and being able to preserve and hopefully prevent the spinal cord from being completely being severed and having a complete injury, we’re seeing more and more of ‘I don’t know how this is going to go because you are considered to have an incomplete injury, but you may be able to do a stand-pivot transfer, or you may be able to ambulate some.’ There are a ton of factors.”

Adjustable vs. Fixed

Kiger said she once asked an audience of therapists their greatest fears when recommending a client’s first ultralight chair. “They said they don’t want to mess it up, because the person’s stuck with the chair for five years,” she recalled. “It’s scary.”

One way to cope with that fear of failure is to choose a chair that offers some adjustability.

“I like to know all the ins and outs of adjustability, because I need some leeway,” Kiger said. “It’s figuring out which wheelchair has the most adjustability. The hard part is when you start talking about rigid versus folding. We as an industry have camped out with the notion that of course, it has to be a rigid chair. It’s got the best ride and energy transfer. However, we also have to think about growth, meaning [the client becoming] bigger or smaller. What can be changed? Do I need to be able to change their center of gravity as they get a better sense of balance, or am I worried about them gaining or losing weight once they’re discharged home?”

Kiger likes to collect information on any possible need for adjustability.

“Ideally, if it’s an in-patient setting, talk to other therapists,” she suggested. “Find out how [the client is] seated and positioned while they’re eating their dinner; ask the nursing staff what they look like, because dinnertime is after they’ve potentially had a long day of therapy. Maybe it’s ‘I can’t even push myself to the group dining room because I’m just too tired.’ Or they’re extra tippy or off balance other times of the day.”

And Kiger recommended teaming with manufacturer reps to learn the fine details of each ultralight frame and system.

“I think a lot of people don’t realize that manufacturers have different frames and such for a reason,” she said. “You’re going to have different adjustability, potentially, with different models of wheelchairs, even though they’re by the same manufacturer.

“For example in our line right now, with the 5R versus the 7R, you’re going to have some differences in what I can do as far as center of gravity, what I can do with any other sort of adjustment, down to whether you choose the caster position or not. I’m looking at where I can tweak.”

While fully dialed-in, non-adjustable chairs can offer lower overall weights and a better ride, first-time ultralight users are still adjusting to new ranges of function and still learning how to navigate using a new form of personal mobility.

“Just because somebody ends up in a wheelchair that requires a fair amount of options for adjustment when they’re first injured doesn’t mean the next time they won’t move up to a chair that is more rigidized, with less choice,” Kiger said. “You can do a fully rigid chair if you want to. But those are normally most successful for people that know exactly what they want and they’re not changing. For somebody newly injured, I wouldn’t necessarily do a fully rigid back. I’d want to do a fold-down back where I could tweak it to three different positions throughout the day, because what if they need different trunk support throughout the day?”

Rigid vs. Folding

The question of adjustability goes hand in hand with the question of a rigid vs. a folding frame. Historically, first-time ultralight users were given folding chairs because of the additional adjustability that those systems offered.

But Lisa Cordero, PT, ATP, National Seating & Mobility, said advances in rigid frame adjustability could mean a different path now.

“I think it’s the way we all used to think,” Cordero said of choosing a folding frame for first-time users. “I don’t think it’s the way we all think now. Rigids have come such a long way with the ability to be adjustable that it makes a very appealing option for people if it’s meeting their needs.… It’s not an automatic rule-out at all.”

That said, there are a lot of factors to think about. “I wouldn’t put someone in their first chair in a non-adjustable rigid frame where you have no ability to do anything,” Cordero said. “That conversation comes from our evaluation and our interview. We’ve had people where we’re all on board, we’re going to go with rigid, and [the client] will come in for the final follow-up or appointment and they’ll say, ‘I was talking to my family, and we talked about how the two of them fold differently, and because of our vehicle and our lifestyle, a folding frame is going to fit our ability to transport better than the rigid will.’

“Even though we showed the ways both fold down or disassemble, for some people it’s what fits better, transportation wise, in their vehicle, no matter what we think clinically. It’s kind of balancing our clinical judgment with what their functional and practical needs are with their family.”

Depending on the client’s functional abilities, a folding frame’s features might make more sense, Cordero added. “I’ve had postpolio patients who were ambulatory, but now they’re in their first manual wheelchair. I’ve had them prefer the folding because they can fold it, they can pop the casters up and roll it in the backseat behind them. A lot of my spinal cord patients want that rigid because they want to lift up and over. So what’s making them the most independent? What kinds of transfers are they working on?

“Someone who’s doing a nice and easy pop-over transfer might be great with a fixed front end. Someone who is working on weight bearing or has the ability to weight bear and that’s a goal for them, they may want a swing-away front end, which is more common with folding. There are very few rigids with a swingaway front end anymore. They may want that style of footrest so they can move that footrest out of the way and work on their transfer as opposed to coming up and over a rigid footrest in front of them.

“We have stroke patients that can qualify for a K0005, but they are stand-pivot transferring. They need that safety of those footrests out of the way to come up and forward. Some of that [determination] is also the mechanism of injury that is causing these people to need the wheelchair.”

Person vs. Injury

The common denominator in building a successful ultralight chair — whether it’s a client’s first chair or fifth — is treating each case like the individual one that it is.

“Every eval should start with a thorough mat evaluation and a history of what was the mechanism of injury,” Cordero said. “If we’re talking about spinal cord patients, what happened? Or someone with post-polio or spina bifida has maybe been ambulating, but now they’re in their first chair. Or a pediatric patient.

It’s definitely starting with a good mat eval and getting a good history on what was their presentation before they came into our clinic requiring that wheelchair? What was their body like? We might see a spinal cord patient coming in saying, ‘I was 30 lbs. heavier before this happened.’ What historically is their growth or their weight and management of that?

“My best practice is I always make sure we do a thorough mat eval and take measurements and then talk about what were they doing prior to this. Were they active? What activities were they participating in? Just try to encourage a conversation about what their goals are, if they’re at that point to think about that.”

Cordero also reassures new clients that she’s with them for the long haul. “Right now, someone may need a higher back because of balance. But we try a shorter back, we try a higher back, and they feel more comfortable with a higher back; their stability is better. But part of that conversation is ‘You’re not locked into this back for life.’ We say this isn’t a hit-and-run, this isn’t a drop-and-go. You now have a relationship with us, and we are going to work with you as you’re changing. As your life and your goals change, we can work with you to make the chair match what those goals are.”

Kiger advised, “Try not to come in with product biases, though it’s super hard. Everyone goes in with a bias, because we know what’s worked: ‘Oh, this reminds me of So-and-So from five years ago, and he did really well with XYZ type of chair.’ I do my best to be as open minded as possible.”

Richardson, who has been on the other end of the assessment when he was newly injured, emphasized that among all the measurements and tech talk about folding vs. rigid frames, the seating team can’t lose sight of the person in the middle of it.

“The guys on their second, third, fourth chairs are typically going to give you a lot of information on what they hate about their chairs and what they love about it,” he said. “But that first chair is so important because it really does help shape that person’s recovery. It’s a big deal. And at the end of the day, it’s about a person. It’s not about an injury, it’s about a person and melding equipment to their lifestyle and goals.

“I hear all the time, ‘He’s a T4.’ No, he’s a human being with a T4-level injury. I think that’s an important distinction to make when you’re looking at a client and speaking with a client.”

That client, Richardson added, needs to be at the head of the team.

“The patient, ultimately, is the director of that team,” he said. “It frustrates me when a PT or an ATP thinks he or she’s the director: ‘I know mobility, this is my role.’ It’s true, they’re critically important pieces of it, and the patient wouldn’t exactly know what to do without them. But at the end of the day, you empower that patient and you set a precedent in that patient’s mind that they’re in control.

“When you go in for surgery, you’re completely out of control there. The medical staff takes over. But it’s an important step to regain that control and feeling like, ‘Okay, I’m taking charge of my life.’ It’s important to involve them, and when you do, that first chair a lot of times is not the hated monster. It’s a team approach on specifying out a chair. We each have our strength in making the best decisions as a team, but ultimately the client is the decision maker, in my opinion. Then when people compare the first one to all their other chairs later on, chances are yes, it will be their least-favorite chair or their starting point. But it will be less of that monster, for sure.”

This article originally appeared in the April/May 2020 issue of Mobility Management.