New technology for those living with motor neurone disease

“I honestly don’t think I would have survived this long without it because communication is the essence of life and it would literally break my heart if I was unable to speak to my family and friends.’’

New technology for those living with motor neurone disease

Emma Miller Fitzpatrick, a 46-year-old mother of two, has motor neurone disease and is talking about her fascinating eye-controlled computer.

Since being diagnosed with the disease in 2010, she has become dependent on other people for everything — she lost the use of her arms, hands, legs, and speech as the condition progressed.

However, thanks to a Tobii eye gaze-enabling device — which works by tracking the user’s eye as it focuses on individual letters on the screen and then putting words and sentences together — she is able to communicate with her family, carers, friends, and the world at large.

Emma, who lives in Kinsale, Co Cork, with her husband Jonnie, and children Rowan, 9, and Alannah, 6, says she can’t imagine how anyone with the disease can manage without the device.

“It’s invaluable. Writing with my eyes, I stare at a letter and it comes up on the screen. Yes, it’s amazing. There might not be a cure for motor neurone disease yet, but a big high-five for those who created the eye-gaze,” she said.

After her speech went, she had been using a letter board, pointing out letters to indicate what she wanted to say. But she then reached a stage where could no longer point, after losing all arm and hand movement.

“My ‘eye-gaze’ [device] was sitting there for at least two months before I had the courage to use it. At a time when everything was changing in my body, I was desperately trying to cling on to ‘normality’. Change was an ugly word to me then. So I preferred to stick with my little blue letter board and point out the words.

“Then, when I was no longer able to point I started to use the eye-gaze. What seemed daunting at first turned out to be a lifeline. Like anything, it’s by practice you gain control, so I reckon after constant use over a couple of weeks I was a master.

“Soon I was able to communicate with all my family again which was fantastic.”

The device also gives Emma full access to the internet, as well as allowing her to run her home as best she can. Her blog, shapeshiftingemma.wordpress.com, has had more than 30,000 hits to date.

Emma believes it to be essential for people with motor neurone disease — which strikes the nerve cells that control the muscles resulting in degeneration and inability to do everyday things — and similar conditions

More than 300 people in Ireland have motor neurone disease and one person dies every five days from it.

The majority of patients are cared for in their homes, but there are only 12 Tobii eye-gaze devices in use countrywide at present, including four in Cork. The device costs around €13,000.

* Kerry Friends of Motor Neurone is taking part in the Ring of Kerry Charity Cycle on July 5 to raise funds for the purchase of devices.

See www.kfmn.ie or email: contactus@kfmn.ie

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