Page 12 - Mobility Management, June/July 2020

ATP Series
The Land of the Quarter-Inch
in an interview with Mobility Management. “When you make big changes on them, they are absolutely not going to like you, and sometimes when you make recommendations as well. Their first word is no, and I don’t blame them because they can’t trust the outcome. They have things set up that work for them, and when I make a change, it may mean that nothing will work for them.”
But the difficulties of convincing patients and their families to try out a new system does not mean that clinicians and ATPs should give up on providing new technology to this population, said Gabriel Romero, VP of Sales & Marketing for Stealth Products.
“The thing that I notice the most with Duchenne’s patients is that they want to move, they want to be independent,” Romero told Mobility Management. “What I appreciate the most is breaking down barriers with them and building that confidence and showing them that there is stuff they can do. They knew they could do it, but they just didn’t know the technology or needed insight on how to do it.”
Starting with a Standard Joystick
Approximately 15,000 boys in the U.S. are living with Duchenne, with about 300,000 cases worldwide, according to the research and patient community nonprofit CureDuchenne2. If those boys have access to healthcare and complex rehab technology (CRT) providers, they will usually be in a wheelchair full-time by their teens.
In most cases, boys will start with a standard joystick thanks to their cognitive and physical abilities. However, Romero said that he will not always start DMD patients on a standard joystick, particu- larly if it’s the first time they are being assessed for a power chair.
“Everyone wants to start with a standard joystick, but there’s a lot of complexity,” Romero said. “It doesn’t mean that I won’t get to a standard joystick very quickly.”
While Duchenne boys pick up the steering and speed mecha-
nisms at a fast pace, Romero will sometimes allow the user to focus on steering and set up speed settings on the chair with a switch until the patient is ready to move on to the standard joystick.
“If I can see that they can already do left, right, forward, then they could pick up a joystick very quickly,” Romero said. “But don’t sacrifice the process of having successful moments and putting something there that they could struggle with and start to develop biases against just because it wasn’t set up properly.”
After starting most Duchenne patients with standard joysticks, Rotelli said it is crucial to remain cognizant of how to adjust the system to their changing needs. Mounting the joystick or alternative driving control in the right place is always important, but especially with a population that has limited hand dexterity.
Typically, she leans toward light-touch joysticks and fiber-optic
options that require less force and range of motion since the boys live in the “land of a quarter inch,” as Rotelli puts it.
“A quarter-inch difference makes all the difference to them,” Rotelli said. “I have worked with many, many patients that can drive by just moving their joystick forward and maybe to the right or left. The funny thing is, if you ask them, if they are just going forward and making left turns and that’s all they can do, and somebody has to reposition their hands to do right or reverse, they’re totally okay with that.”
Do’s and Don’ts for Duchenne Tech
As the disease progresses, boys will begin to exhibit cardiac and respiratory issues on top of their muscular atrophy, making it even more difficult for CRT professionals to find a mobility solu- tion that patients can accept and integrate into their daily lives.
The issue is not a fear of change, but how young men develop habits to make their lives run more smoothly, Rotelli said. In addition, more advanced Duchenne patients who are headed to college and building careers feel psychologically opposed to adopting digital systems because it can serve as a confirmation that their condition is getting worse, Rotelli said.
“I try hard to show and say: Look at all these things you can do with these switches or look at all the things you can do with these different joysticks,” Rotelli said. “We have got to under- stand that whatever they are using to control their chair, they’re also going to be using to control technology — computers, laptops, phones, games, everything. “
Installing a system of sensors, fiber optics or electronic switches that do not require sustained pressure is the next step in the patient’s journey, according to Romero. Stealth offers precision mini proportional joysticks, including an i-Drive version that can be programmed through the PWC programmer or separately through i-Drive software on a computer or tablet.
“We have to understand during the assessment process: Can they use the joystick to the full capacity?” Romero said. “Is this just the reality of their usage? Or can we give them something more simple, something easier for them, that they could use more abilities and have more independence?”
In addition to introducing the technology, it’s crucial that parents understand what the technology can do and that they feel that they have some control over their child’s safety and mobility, he said.
“The moment parents feel out of control, that demo chair is back in the garage until they can get back to the clinic,” Romero said. “They’re not trialing it anymore, and the child is not getting to practice with it.”
For Rotelli, working effectively with Duchenne patients is also a matter of determining what technology will not work for their condition. She is not a fan of using head switches because they can quickly lead to weakness and fatigue in the necks of some boys. In the past, Rotelli has also heard suggestions that younger Duchenne boys should consider molded seating systems.
“That is 100 percent the wrong thing to do,” Rotelli said.
Their first word is no, and I don’t blame them because they can’t trust the outcome — Lisa Rotelli
12 JUNE-JULY2020|MOBILITYMANAGEMENT
MobilityMgmt.com