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Saint-Vincent innovation helps disabled patients communicate

By Andrea MacLean

OTTAWA – A team at Bruyère’s Saint-Vincent Hospital is adapting conventional technology to help severely disabled patients communicate and maintain
some independence.

By customizing a variety of technologies, Assistive Technologist Bocar Ndiaye and volunteer Yih Lerh Huang have found simple solutions to complex
communication challenges. Today, approximately 50 of the 336 patients at Saint-Vincent Hospital, which operates the province’s largest Complex
Continuing Care program, are using open source software and hardware and everyday objects (such as headbands), to remain connected to family and
friends.

“Unfortunately, many of our patients have lost the ability to use their hands and their voices in a traditional sense. We create the opportunity to
communicate when nothing else is available,” said Bocar Ndiaye. “By working closely with our patients and their families we can customize solutions for
them.”

Using mainstream technology and tools, Bocar and Yih Lerh are able to help bring the outside world in for patients who otherwise would be unable to
communicate. Small and simple tasks such as changing the channel on the television or adjusting the volume on the radio allow patients to enjoy little
pleasures and have a better quality of life.

“If the patient wants to control the TV or make a phone call, but physically isn’t able to do it, we use different types of sensors – touch sensors or
light sensors – that we customize for that patient who has limited hand or head movement,” said Ndiaye.

The devices are attached to the patients using hair bands. Some of the wiring is also protected by cases for glasses. Ndiaye and Huang work on a
shoestring budget, but have been able to custom-tailor devices for dozens of patients.

For seven years, Molly Knox has been a patient at Saint-Vincent Hospital. With Bocar’s help and that of his team, she now just has to move her head to
control her iPad, meaning now she can watch Netflix and Skype with her friends and family around the world. On her head – making this all possible – is
a simple, everyday headband that has been customized to enable her to control the computer.

“It’s made a big difference,” she said. “I can go anywhere on Google. I can talk to friends.”

“I am so proud of the passion and commitment of this small but mighty team of employees and volunteers,” said president and CEO, Bernie Blais. “If
there is something Bruyère can do to help our patients – we will.”

Combining dedicated high-cost healthcare devices with low cost hobbyist parts such as capacitive touch sensors, infra-red (IR) light sensors and
gyroscopes, and working closely with a wheelchair technician, occupational therapists and speech language pathologists, Bruyère affords patients’
life-changing projects on a shoestring budget.

“This team works hard and develops solutions that change lives,” says Mr. Blais. “We picture a day when the team has philanthropic support so even more
lives will be transformed.”

Saint-Vincent Hospital ALS patient, Howard Hunter, uses the Tobii eye-tracking software on his computer. This highly specialized and technical software
responds to his eye movements and the click of a special button. Hunter is wheelchair bound and has limited mobility in his hands and arms. His
daughter Annie said it’s made all the difference in his life.

“Having the computer really allows him to be like everybody else, to use his computer,” she said. “They get him up and all you need to do is set up the
computer. You turn on one button and he’s able to use the Internet as anybody else would. There’s nothing he can’t do on this computer with infra-red
eye-tracking software. It’s definitely amazing and he enjoys it a lot.”

The future of this team’s initiatives and ideas is endless as technology advances. Ndiaye and Huang are currently researching ways to help patients who
cannot move or communicate. There are undoubtedly opportunities to adapt Bruyère’s simple solutions more widely to other patients. Ndiaye said they
wanted to adapt a special game that allows a person to elevate or lower a ball using their minds.

“What we’re trying to research is if there is any way we could interface it with a smartphone or tablet as well,” he said.

The team recently received international recognition as they were asked to present their customized patient communication devices at the esteemed ISAAC
International conference in Lisbon, Portugal this past July. This is a key conference for Augmentative and Alternative Communication, which brings
together experts from around the world.

Augmentative and Alternative Communication (AAC) describes the methods that make communication easier for people who find it hard to communicate by
speech. It includes many different methods, such as electronic talking aids, computers, books and boards with pictures or letters, and sign language.
AAC can help people to understand what is said to them as well as to say and write what they want. Clients have mostly acquired conditions such as
Multiple Sclerosis, Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy, traumatic head injury, spinal cord injury, stroke and other neurologic
disorders.

Andrea MacLean is Communications Manager with Bruyère Continuing Care, in Ottawa.

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