MOTOR NEURONS: ISTOCKPHOTO.COM/JXFZSY
Imagine going to the gas station and putting gas in your vehicle while knowing you’re never going to be able to refuel again. Would you drive your car differently?
This is how Gabriel Romero, VP of Sales & Marketing at Stealth Products, explains alternative driving controls for power wheelchairs, just as they had been explained to him 20 years ago. The answer, of course, is yes, we would drive differently. We would likely be careful not to punch the gas too hard when taking off from a red light and to drive below the speed limit. We would do all we could to conserve the remaining fuel and to make it last as long as possible.
The same principle goes for clients with amyotrophic lateral sclerosis (ALS). ALS progresses, often quickly, diminishing clients’ abilities to walk, carry out activities of daily living, swallow and, eventually, breathe independently. Because of disease progression, clients with ALS have bodies that are running on limited fuel and must operate their power chairs in a way that conserves as much of their remaining fuel as possible. Just as the name implies, alternative driving controls offer ALS clients different ways to drive their power chairs and can adapt to clients’ changing needs, ultimately decreasing their fatigue and potentially increasing the longevity of their independent mobility.
Why Alternative Drive Controls for ALS?
Since ALS typically progresses swiftly, the time period in which ALS clients can operate a standard joystick is, with some exceptions, quite brief. Because of this progression, Lisa Rotelli, Director of Adaptive Switch Laboratories, said that getting clients set up with alternative driving controls that can evolve alongside their needs is “imperatively crucial.”
“Within a year’s time,” Rotelli said, “a patient can have several access changes, or different abilities to use their technologies, driving, seating and access to their communication, computer and phone. From the start we need to recommend a system that can change and be adapted to these needs — just because [ALS] changes so rapidly. It’s really, really difficult to maintain one drive control because of weakness. From the start, we always recommend that somebody get a system that can be adapted and changed.”
Robert Norton, ATP, Director of Clinical Development at Sunrise Medical, said, “ALS clients in particular have a very rapid, or what can be a very rapid, progression of a loss of upper-extremity functions, so the ability to have controls and be able to place those controls wherever clients still have function is ideal. Or, it’s not just ideal; it’s absolutely necessary because they do not have the strength or range of motion to operate a standard joystick.”
Relying on setups that do not accommodate for a degenerative disease like ALS forces clients to expend energy unnecessarily. Coming back to the car analogy, Romero said, “All of these things are really important early on due to the fact that the energy expended to drive the chair is not being [gained] back.”
Without the ability to change and transition to different controls, Norton said clients “are either left with zero mobility and zero independence in adjusting their seating position, or we have to use a specialty control to give them that ability. It is 100-percent crucial to their independence.”
The Progression Sets the Course
The progression of ALS is largely what determines the seating and mobility plan for ALS clients. Standard joystick controls do not offer ALS clients the same possibilities for adapting to the progression that alternative driving controls can. “What happens a lot of the time, especially when you’re dealing with ALS clients in power chairs,” Romero said, “is they’re using a joystick that is configured for a different population, meaning that the springs of the joystick and how much flexion is needed at times could be for people who aren’t struggling with a muscle-degenerative type of disease, and that’s a consideration that needs to be looked at early on.”
Romero further explained that a forward command on a power chair is the longest command a client will typically hold. Given that, Romero asked, “Why am I going to have somebody press and hold something that is going to fatigue them?”
He added, “Just see how hard it is to press forward in a direction [on a standard-type joystick] as slow as you can, and you’ll see how much energy it takes, how much effort it takes to deflect that joystick. And so now, we’re asking people who are trying to store [their energy] to use it in this way.” Alternative driving controls, however, give clients another option.
“[Alternative driving controls] is a pretty wide-ranging term,” Norton explained. “And all we really mean by that is anything other than the standard choices. It could be a different type of joystick, but it requires less movement or less force. It could be a switch. It could be a head array, any number of things.”
Even though a standard joystick is often ruled out as a starting setup for ALS clients, variations on the traditional joystick can be utilized, at least in the early stages. Norton explained that a joystick operated by hand is still an ideal starting position because “it is just the most natural and intuitive way to drive. That’s why we have a standard joystick — because it’s the most intuitive way to operate the power chair.
“We have alternative drive controls that are joysticks; we have many proportional joysticks that require very, very little force and very, very little movement that oftentimes an ALS client can still operate, and it still gives them full control over driving their chair and adjusting their seating position.”
Romero also recommended joystick variations that are more suitable for clients with a degenerative disease. “I’m always recommending joysticks with lighter touch. It can still be a standard-sized joystick, but the spring is lighter or it’s configured differently in the programming of electronics where you don’t have to press all the way to get 100 percent.”
Beyond controlling the chair, Norton said that alternative joysticks have other options as well. “You can integrate home controls, TV, whatever you want to integrate into it,” he said. “So if they have some hand or finger movement, that is usually a good starting point.”
Once clients have lost more upper-extremity function but maintain some neck movement and strength, Norton said that a head array might be utilized. With a head array, “You can give them the ability to drive proportionally, and then when they lose that strength and that range of motion in their neck, we can move it over to a switch system, which is easier for them to operate.”
This, Norton said, can be accomplished without replacing the entire system. “It gives you both of those capabilities within one piece of equipment, so you’re not having to try to get a new piece of equipment for them.”
The importance of minimizing time between transitions in equipment for ALS clients cannot be understated. Rotelli noted, “ALS clients do not have time to wait for insurance authorizations and fighting for funding. Up front and initially, it’s really important for them to have a system that can adapt with them on the go. Being able to keep up with their mobility and technology needs in real time can allow a patient to continue to work and be more independent.”
She added, “In the clinical rules that are set up within our funding system, we can prescribe equipment if a patient’s medical status has changed. But to prescribe equipment that is not flexible and adaptable is to set up for failure. By the time you get funding authorized, the client may have changed again.”
After transitioning to a switch system, that system can continue to be adapted. “You can move the switch system,” Norton explained. “There are switch systems that clients can drive with their knees, if they have the ability to rotate their knee out. You can put switches at the feet. We have a number of clinicians who set up systems with left and right turning on the right foot plate and forward and reverse on the left foot plate, or whatever works best for that client.”
Choosing the Best Path
With all the various options for alternative drive controls, what is best for an ALS client? According to Rotelli, that really depends on the individual client because as she stated, not “every ALS patient takes the same path. But I am not a fan of a standard head control for a patient with this diagnosis. We are always trying to set up systems that can cause the least amount of fatigue.
“We like to separate the controls so there is a resting component built in. The greatest challenge is keeping up with the technology needs. No matter how the drive control might change, how can we maintain the ability to access seating for position changes, communication, computer and phone access, even when a patient may have only one consistent access point?”
This again underscores the importance of using adaptive controls, which can be fine tuned to a client’s unique needs.
Norton, for instance, explained, “There are clinicians who will go straight to a switched driving system. Looking at the patient’s history and ‘Where were we six months ago, where are we now?’ can give us a better idea of how fast we’re progressing. So sometimes clinicians will say, ‘You know what? Let’s just go ahead and go to a switch system because even if we put a head array on, we’re only going to use it for a month and then we are going to be at the switched system anyway … There are times where we go ahead and go to what would be considered the most advanced or the most customizable option. Just because, yes, we know that they’re going to get there really soon.”
The alternative driving controls that support a seating and mobility plan for ALS clients are not necessarily specific to that population. Norton said, “These same types of recommendations are the same pieces of equipment that are utilized for a wide variety of diagnoses. The difference with ALS is the progressive nature of it, and so you have to be ready to adapt … The equipment is the same; the progression is what you have to watch out for.”