Page 8 - Mobility Management, May/June 2022

ATP Series
ALS: Three Perspectives
peace or a time of war, are at a greater risk of dying from ALS than if they had not served in the military. For reasons as yet unknown, veterans are twice as likely to be diagnosed with ALS as the general population.” Multiple studies affirming the higher ALS risk for veterans led the VA to implement, in 2008, a “presumption of service connection” for ALS. That declaration “presumes that ALS was incurred or aggravated by a veteran’s service in the military.” At that time, Mitchell was predominantly working with veterans
with SCI or advanced multiple sclerosis. “But once [the ALS presump- tive service connection] became part of the equation, we started
our multi-disciplinary ALS clinic. We were the first VA to become a Certified Clinical Center of Excellence by the ALS Association.”
Seeing the Patterns
In focusing on this relatively narrow band of ALS clients, Mitchell saw patterns emerging.
“Somebody with a spinal cord injury is going to be relatively stable,” he explained. “If I accomplish my goals as an occupational therapist and dial in the [wheelchair and seating] configuration for optimal function — it inherently requires a lot of attention to detail. It’s a snowflake, of course. But once I had it dialed in, it was pretty stable.”
That wasn’t the case with ALS clients.
“What I began noticing is that veterans with certain functional presentations of ALS tended to experience many of the same prob- lems,” he said. “I also realized that many of these problems weren’t going to die with the first user who had experienced them. I would see them again and again.” Many of these problems were directly related to gravity. Finding ways to effectively mitigate the effects of gravity on a user’s posture, positioning, and function is a continual challenge for any seating clinician who works with this population. “As I came up with effective solutions to these problems in my clinic, it didn’t make sense to have to re-create the same configura- tion from scratch for every veteran who shared a given presentation.” Instead of delegating the job to the DME supplier he worked with, Mitchell looked for a more efficient process. “I began sending pictures to the manufacturers to see if they could replicate a given solution
as a custom option,” he said. “And that’s evolved nicely over the years. Our ALS power chairs now come with a modular, adaptable infrastructure that allows us to really dial in the configuration so that it effectively meets their clinical and functional needs. As those needs change, the same options will allow us to reconfigure a chair so that the veteran can continue using it for as long as possible.”
The 80/20 Strategy
Although Mitchell initially developed the custom options to address the most frequent issues he saw in his clinic, he also encountered more challenging issues in subsets of veterans who shared specific functional presentations of the disease. This led to what he refers to as his “80/20” approach to ALS power chair configuration.
“Without getting too technical,” he explained, “I have found that nearly every veteran who could use a conventional joystick during their initial evaluation continued to be able to use a joystick for as long as they had their chair. Only 20 percent of the veterans we followed with ALS needed to use alternative controls. What’s more, we were fairly successful at predicting which veterans would need
these systems at the time of their initial evaluation. While there have been some exceptions, having this knowledge has allowed me to develop two different types of ALS custom configurations: one to effectively meet the needs of the majority of veterans who have ALS, and another which has been optimized for the important subset of veterans who needed alternative driving controls.”
Mitchell has discovered a simple test has been a fairly accurate predictor of which configuration is likely to work better.
“I have them fully tilt back in the chair. If they have enough function against gravity to easily reach the end of the joystick, they’ll probably belong to the 80-percent of veterans who will continue using a joystick. If not, they would be a better candidate for my Hybrid Alternative Driving System (HADS) configuration.”
On his “80-percent” chairs, proper joystick positioning is key. “As a rule, you want to provide a ‘low, level and inline’ joystick configuration,” Mitchell said. “These users tend to do best when the joystick is located directly in front of the armrest — no higher than 2" to 3" above the surface of the arm pad. The armrest itself should be parallel to the seat surface at the back angle they need
to breathe comfortably and have postural stability. Clinically, the objective is to minimize the need to use anti-gravity movement by providing uniform support along the entire length of the forearm. The armrest and joystick are basically configured so that if someone has full range against gravity, but can’t tolerate resistance, they will still be able to operate the joystick and power seating functions.”
For the remaining 20 percent of veterans, Mitchell said, “Their ALS typically affects both upper extremities first. Most will have very good lower-extremity function. They may also have fairly good head control or oral motor function that can be taken advan- tage of. These individuals tend to progress a little more slowly, which is good because their chairs typically take a bit longer to configure.
“Oftentimes, these users will start out using a compact joystick with the same low, level, and inline configuration. Some may continue using the compact joystick for some time. A few may never go on to use a hybrid system, but should we need to make that transition, that infrastructure is already there.”
Instead of using head arrays or other typical alternative controls, Mitchell has combined his clinical understanding of ALS with his years of providing conventional systems to develop a somewhat unconventional approach to providing alternative driving controls.
“To receive a diagnosis of ALS, there must be signs of upper and motor neuron dysfunction in three out of four segments of the nervous system,” he explained. “There’s probably not a single body part that’s left unaffected by the time they come to my clinic.
“Conversely, conventional alternative controls generally require very good use of a single body part. To effectively meet the needs of these users, we need to be able to customize systems to take advan- tage of whatever function they have. Implementing such systems can be done most easily by using a simple switched driving interface, a power seating switch interface, and a simple network of color-coded extension cables. If this infrastructure is already on a power chair, it becomes possible to implement a Hybrid Alternative Driving System with far less time, labor, and technical expertise than would otherwise be the case. It’s simply a matter of finding
8 MAY-JUNE 2022 | MOBILITY MANAGEMENT
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