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Speaking with the eyes...

For patients who can move only their eyes, eye-gaze devices help make their lives more meaningful

ST 20170822 Speaking with the eyes
 

TTSH speech therapist Tan Xuet Ying shows Ms Sharon Teo how to use an eye-gaze device that allows her to communicate via a computer. Ms Teo has a progressive neurodegenerative disease known as Amyotrophic lateral sclerosis. PHOTO: GIN TAY FOR THE STRAITS TIMES 

The Straits Times (22 August 2017) - Things fell apart when Ms Sharon Teo was diagnosed with a progressive neurodegenerative disease known as Amyotrophic lateral sclerosis (ALS) in March 2013.

She had a fall at her workplace.

A couple of months later, she started losing a lot of weight. Her hands became very weak and she struggled to type or hold a pencil.

ALS is a motor neuron disease in which nerve cells gradually break down and die. Renowned physicist Stephen Hawking has the same disease, for which there is no cure.

Ms Teo, now 57, has watched the muscles in her hands and legs gradually waste away. Her lungs are weak. As the disease has affected her swallowing ability, she has been using a feeding tube since late last year. She can only speak softly.

“Before I was diagnosed, I just concentrated on my job. Life was very meaningful,” she said. “Now, when I see a mosquito biting me, I can’t do anything about it.”

INTERACTING WITH OTHERS

Now, when I see a mosquito biting me, I can’t do anything about it... But I still want to communicate with other people, rather than wake up and wonder what time the sun sets.

~ MS SHARON TEO, on being able to send e-mails, surf the Internet and use WhatsApp to send messages and pictures to her friends.

Ms Teo, who previously held managerial roles in various firms, now depends on other people for help with daily tasks.

She also has to cope with the social isolation of the disease. But since June, she has found new meaning in her life, thanks to an eye-gaze device made by a firm called Tobii Dynavox.

The device uses eye-tracking technology. It works by using an eye-gaze camera to track a user’s eye movements, which then move the cursor on a computer screen.

There are three ways to click a mouse – the user blinks, focuses on a specific area for milliseconds or controls a switch.

Using the second method, Ms Teo can now send e-mails, surf the Internet and use WhatsApp to send messages or pictures to her good friend

Valery Liew, 63. “But I still want to communicate with other people, rather than wake up and wonder what time the sun sets,” she said.

“I attend support group meetings every three months to share my story and inspire other MND (motor neuron disease) patients.”

Ms Teo first tried out the device, offered to suitable patients under Tan Tock Seng Hospital’s (TTSH) Help Me Speak initiative, when she was warded there last December.

“Every morning after a shower, I would wait for speech therapist Tan Xuet Ying to bring the assistive device,” she said.

TTSH started this initiative last year and, so far, it has reached out to 24 patients, including ALS patients.

The prevalence of MND is about seven per 100,000, said Dr Ang Kexin, a consultant at the neurology department of the National Neuroscience Institute. “The rate at which ALS or MND progresses varies from one person to another.

The average lifespan from onset of symptoms is three to five years, but many people live longer than that.”

Dr Ang added: “Patients rarely lose control of their eyes, hence the eye-gaze communication device is very useful for those at advanced stages of ALS or MND, when they have difficulty communicating.”

Other patients who have conditions that affect their speech function, such as a stroke or Parkinson’s disease, or who are on tracheostomy or intubated, can also benefit from it, said Ms Tan.

Under the initiative, speech therapists will introduce the Tobii device to patients so they can communicate with their friends and family and feel socially connected again.

Patients can loan the device to try out at home and caregivers can be trained to set it up. Four Tobii devices are available for loan at TTSH. Ms Tan said the hospital is looking to add more.

To prepare for the initiative, Ms Tan visited augmentative and alternative communication centres in the United States and Canada last year. She found that assistive technology is embraced there by patients, who value quality of life and independence, and want to continue doing things like they used to.

“I felt that we have to do so much more to help patients in Singapore,” said Ms Tan. “We had a few patients here who died without the means to express themselves or convey their last wishes.”

Cost has been a major deterrent.

The Tobii device is available for $7,000 each, now that it is being distributed locally, but it used to cost $10,000, said Ms Tan.

Mr Ivan Tan, the senior manager for SPD’s Specialised Assistive Technology Centre, said it gets referrals from hospitals and would assess the patient and introduce the Tobii or other devices. SPD supports people with disabilities.

Children with severe physical disabilities who may also benefit from the Tobii device have been referred by the KK Women’s and Children’s Hospital, he said.

The centre has three Tobii devices available for loan. It plans to add five more, he said.

Patients pay $22 and a refundable deposit of $100 to $400 to loan it for two weeks at a time.

“We are giving them a means to communicate with others. If you can’t tell people what you want and how you feel, it’s very frustrating,” said Mr Tan.


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Source: The Straits Times © Singapore Press Holdings Limited. Permission required for reproduction