A Berkshire sales manager who is only able to move his eyes refuses to let motor neurone disease stop him from working. Steve Dimond from Newbury, who was diagnosed in August last year, is determined to defy the cruel condition and continues to offer ideas on how to move his company forward.
Thanks to eye-gaze technology the 55-year-old is able to keep working for software company DMT Development Systems (UK) in Bracknell.
His colleague at DMT, Kelly Boyson from Wokingham, said: “Every Monday we have a management meeting and Steve logs in via Skype. He comes back with ideas on how to move the company forward by email.
“Doctors said he has only months to live, but he still works for us. I don’t know how many people would do that when they are at that point in their life.”
Dimond uses an eye-operated communication and control system that empowers people with disabilities to communicate and interact with the world.
It involves a camera attached to tablet which tracks the movement of his eyes. When he looks at a specific item, it allows him to select it and action it, whether it is a letter on a keyboard or launching an app. The system can also speak the selected words using his own voice that he recorded as his illness started to take hold.
He explained: “There’s a camera attached to my tablet which tracks the movement of my eyes and knows what I’m looking at. Predictive text helps speed things up significantly.”
Dimond’s wife Karen is now his full-time carer and recalls how the disease ‘came from nowhere’. She said: “You can be absolutely fine one day and your world comes crashing down the next.”
Karen said losing the use of his legs and arms had been particularly ‘devastating’ for her husband as he was a keen runner. He had previously run the London Marathon three times, raising money for Alzheimer’s Society and Prostate Cancer charities.
“His best time was 3:23 so he wasn’t a slow runner either,” she said. But it was when Dimond was training for a half-marathon in Reading in early 2016 when he noticed his times were dropping off.
Initially, Steve and Karen attributed it to his new job and spending more time in his car. Then after flagging it to his GP he was referred to a neurologist in Reading who suspected a collapsed disk and sent him for an MRI. When the scan came back negative and further symptoms developed it was diagnosed as MND – a progressive neurological condition that is life-limiting and has no known cure.
As the disease tightened its grip Dimond’s mobility worsened and he can no longer move his upper and lower limbs. He has now lost his ability to speak and eat and in February this year had a gastrostomy tube fitted meaning he receives all fluid and nutrition directly into his stomach.
Karen said this was one of the hardest parts: “We always used to love our food. Simple things like going for coffee or dinner you can’t do anymore and you take it for granted till you haven’t got it.”
Dimond has to contend with constantly changing symptoms as the disease relentlessly destroys more muscle groups but he has managed to retain his sense of humour.
Karen said the company had helped her husband battle on as his body shut down. “He is one of the most positive people I have ever met,” she said.
“His company have been absolutely fantastic. They treat him exactly as they used to. A lot of people see he is in a wheelchair and don’t realise that he is mentally all there.
“Before he had it I really did not know anything about the disease. It can affect anybody. ”
Dimond and DMT are now fundraising for his local MND Association Reading and West Berkshire branch with donation of £1,785 to date. There are cake sales and other ideas planned in the run-up to Christmas.
His colleagues have also posted a video on YouTube for the charity’s Silence Speaks campaign.