ATP Series

A Manufacturer's Perspective on ALS: Achieving Balance

A manufacturer's perspective on ALSTo Angela Regier, OTD, OTR/L, ATP, Senior Portfolio Marketing Manager, Permobil Americas, working successfully with a client who has ALS requires careful balance.

For instance, there is the equipment needed today vs. what could be needed in the future.

“For me, first and foremost, is the ability for that system to adapt and change as the client changes,” Regier said. “Making sure it has what it needs, or has the capability of. Even if they walk into the clinic or roll in with a walker, that the chair can do tilt, recline, elevating legs, and it can take alternative drive controls. Just knowing that’s the path we’re going down, so that adaptability of the system — not only the wheelchair base, seat functions, and electronics, but also the seating components, such as the cushion or the backrest. With a backrest, maybe initially the individual doesn’t need trunk support, but they likely will at some point, if they’re open to it.”

Then there’s weighing what’s needed today against the time it will take to procure additional equipment.

“What I would do is ask for everything I think I’ll need at the onset. Will it all get funded? Maybe not. But typically with this diagnosis, funding sources have an awareness of the quick rate of progression. I’d rather get a back support that’s capable of adding lateral trunk supports when needed, and get those lateral trunk supports as a part initially with the chair. I’d rather try to get it all at once because knowing the time-sensitive diagnosis and the way it progresses, I don’t want to get a chair and then as soon as it’s there, now I need to add something. That’s going to be another justification letter, it’s going to take time to get funded, then there is the time it takes to receive it from the manufacturer and equipment provider. I’d rather try to get it all at once so there isn’t a delay in providing what is needed to optimize independence and quality of life.”

A Difficult Diagnosis

But there is also the need to balance what the seating team believes to be most functional with what the client can accept.

“This is a hard diagnosis to navigate, especially when someone is just getting diagnosed,” Regier said. “It’s a fine line you have to walk between helping folks understand: ‘We may need this, so let’s at least look at it and consider it. We don’t have to use it right away, though. We want to keep you moving and doing as much as you can for as long as possible, but if and when we need this, we want it to be a quick and easy transition.’

“I think that’s the other piece, from a therapeutic standpoint. It’s not just about selecting equipment, it’s about meeting everyone where they’re at, and navigating that sensitively.”

Regier suggested giving clients time to process. “Maybe the initial discussion is, ‘I’m not ready for this.’ Okay, then let’s come back to it, maybe when you’re more ready. It’s just, again, that fine line of not waiting too long.”

Striking a Clinical Balance

Regier is employed by a Complex Rehab manufacturer, but she’s also a clinician who knows the need to balance her clinical goals with her client’s goals and lifestyle.

For example, “Comfort is a huge point. The perfect posture isn’t always comfortable.”

If a client pushes back against clinical goals, Regier said, “I think it’s just educating, reading the situation, and figuring out how much they can take in. Maybe this, again, is over a couple of sessions, because it’s a lot of information. It’s educating them on why I’m looking at posture. Why is it important to sit straight? Why is it important that your pelvis is level? Talk about scoliosis, pressure injury, respiratory compromise that could occur. In words that they understand, I would educate them: ‘This is why I’m looking at it and why I want to talk to you about it. Now what are your thoughts?’

“Because obviously, the equipment needs to meet their needs. It’s their equipment; they’re in it every day, I am not. I know from a best-practice standpoint what I want posture to look like, but does that make sense for them and their goals and needs? It’s finding that compromise. But I always want to make sure, if we are going to compromise or make a decision based on comfort that leads to maybe a difference in posture from what I would want clinically, that they understand the potential trade-offs.”

The balancing act demanded by ALS and its quick progression make it vital for the seating team and the client to be on the same page, even if they don’t agree on every detail. “I think if you can build that therapeutic relationship, they may not be 100 percent on board, but if you can have them be an active part of the conversation, they may be more likely to say, ‘Yes, I can see where you’re coming from. Maybe I won’t use it initially, but it makes sense that we need this.’ Then chances are, by the time they get it and it’s all set up, they will probably be using it.

“I think with any diagnosis, you always have to leave that door open.”

This article originally appeared in the May/Jun 2022 issue of Mobility Management.

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.

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