N.B. rehab centre makes inexpensive device for ALS patients to use computers, phones

·4 min read
An example of a sensor from a device designed at the Stan Cassidy Rehabilitation Centre in Fredericton. The devices are meant to help ALS patients, who have less movement as their disease progresses, operate computers and cellphones. (Stan Cassidy Rehabilitation Centre - image credit)
An example of a sensor from a device designed at the Stan Cassidy Rehabilitation Centre in Fredericton. The devices are meant to help ALS patients, who have less movement as their disease progresses, operate computers and cellphones. (Stan Cassidy Rehabilitation Centre - image credit)

For someone with a serious neurological disorder like amyotrophic lateral sclerosis, being able to use a cellphone or tablet can make a big difference in life.

But it can become impossible as ALS progresses, and a person's ability to move decreases.

It was something Marla Calder was seeing in the ALS clinic at the Stan Cassidy Rehabilitation Centre in Fredericton.

"You and I might use a standard mouse or a standard keyboard or something like that to access those technologies," the occupational therapist said. "They might not have that, so they may only have, like, a small movement in a finger, or they might have the ability to, you know, move their eyebrows up."

Calder wanted to find a way to change that, given how important those devices can be for someone with limited mobility.

"If you think about how often we use our devices in the run of a day, I mean, it lets us, or allows us, to connect with our world," she said.

"And that might be family and friends from texting to, you know, reaching out if they need something. It could be business. It could be similar interest groups, general information — people access health information, online banking."

Submitted by Marla Calder
Submitted by Marla Calder

"So that, if they have trouble getting out and about, you can do a lot of that right from your device."

And these days, it also allows people to control their environment.

"So if you have control of your cellphone or your tablet, most of those will all interface with smart home products, so you can control the stuff in your house," Calder said.

There were devices on the market that could help, but Calder said they could be expensive, in one case costing nearly $14,000.

And that would make it nearly impossible for many people to own one.

So Calder asked Rachelle Bernier, the Stan Cassidy Centre's rehab engineer, to try to come up with an affordable solution.

Stan Cassidy Rehabilitation Centre
Stan Cassidy Rehabilitation Centre

Bernier was enthusiastic about the challenge.

"It's a lot of fun, a career that kind of presents you with a puzzle that the end result can help a person in their everyday life," Bernier said.

"The technical side of it, though, is a blast for me. I love trying to … use new technologies to apply to the problems that people are faced with."

Bernier developed two types of switches that can allow these patients the ability to use a device.

The first is called a twitch switch, designed for people who have very limited motion. It consists of a controller box with three wireless sensors. Up to three sensors can then be attached to the patient, on any part of the body where they have even limited movement.

That movement will be picked up by the sensors, allowing the patient to navigate a computer or cellphone screen.

The second version is called a lift switch, for patients who have more movement ability, but who no longer have the strength to hover their hand or foot over an accessible switch they already own.

Stan Cassidy Rehabilitation Centre
Stan Cassidy Rehabilitation Centre

It essentially works in the opposite manner of a button, by activating when the person lifts their hand off the switch, which can even help a patient play video games, if properly configured.

"We came across an endurance issue with one of our video gamers where, like, pushing a trigger button over and over was fatiguing," Bernier said. "But if he could leave his feet on it and then lift off when he needed it, it was easier."

And since the devices can be made using 3D printers, they are very affordable.

"The twitch, which I believe is coming in under $150, and the lift, which is under $100," Bernier said.

The devices are now being tested, and the rehab centre is recruiting people who have ALS or muscular dystrophy to try them out.

Calder said they haven't received feedback yet. Early tests with the prototypes went well, although there were a few glitches that needed to be fixed.

Stan Cassidy Rehabilitation Centre
Stan Cassidy Rehabilitation Centre

The project received federal funding under the accessible technology program, and Calder said the goal is to get the devices to patients across Canada if the field tests go well.

In order to do that, Calder said, the plans to build a device will be open source, and they have partnered with the Neil Squire Society, which can provide volunteers to help.

"So the end of March is when we would like to have it available to anyone to access a device online," she said. "They would need to have a local or virtual volunteer or a friend or family who has a little bit of a tech savvy know-how, so that they can maybe go to a library and 3D print the cards and go to all the links and order the parts that you need and be able to assemble it all together.

"The instruction manuals are are all there to do it, and we're hoping it can be user-friendly enough to not scare anyone away."

In the meantime, anyone with ALS or muscular dystrophy anywhere in Canada interested in taking part in the program can call (506) 262-6861 or reach the program by email at samantha.burpee@horizonnb.ca.

"They will keep the device for free, and what we're looking for is feedback."

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