To 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.”