Heights terrify Amanda, yet she will skydive from 10,000ft
The bravery of motor neurone disease sufferer Steve Coke has been an inspiration to his carer and is altering her life. Clare Mulgrew reports
HOUSEBOUND Steve Coke is determined to help future sufferers of motor neurone disease by telling his story. And carer Amanda Taylor is supporting his awareness campaign by leaping out of a plane next month. Motor neurone disease (MND) is a fatal disease of the nervous system, attacking nerve cells which send messages from the brain to the muscles. As these nerve cells, or motor neurones, gradually die, the muscles stop working and the body slowly deteriorates, leaving people like Steve reliant on carers like Amanda. Steve, 50, of Littlebrook Close, Ashford, was diagnosed with MND last January but said he noticed symptoms about 12 months before that. “I had muscle cramps in my arms and twitching in my chest,” he said. “Doctors gave me blood tests and gave me a clean bill of health because they had never seen anything like this before.” But about six months later, Steve was referred to the National Hospital for Neurology in London, with suspected multiple sclerosis (MS).
It was here he learned he had MND, but Steve had already done his own research and had expected the bad news. “I was 90 per cent sure I had MND when they told me so it didn’t come as a big shock,” he said. Amanda Taylor, 38, of Godinton Park, has been a care worker at Ashford Homecare for six months and Steve was one of her first patients. Amanda, and her colleague Jo Trigg, began visiting Steve three times a week last September when his mobility began to deteriorate. But the disease progressed rapidly, leaving Steve virtually immobile and he now needs round-the-clock care. After losing a stone in weight over Christmas, then spending four weeks at the Pilgrims Hospice, a 24-hour care package was set up through Sentinel Care and Ashford Homecare so Steve could live at home. “It started in my arms but over the last six months it has progressed to my legs and I have lost the ability to walk,” he said. “Over time all your muscles emaciate and you become completely motionless. “You can lose speech and the ability to swallow. “The main frustration is that it’s progressive so I’m always playing catch-up. “As I manage to cope with the loss of one muscle, I lose another.” But Steve, who used to work in Marbella selling property, said the boredom created by being housebound 24 hours a day, seven days a week was one of the worst aspects of the disease. “You feel imprisoned even though it’s your own house. It would be nice to do normal things like go outside or go to the shops, or pick up a book and read it. “For 22 hours a day I’m either sitting in this chair or lying on this bed. I’ve lost my independence.” But despite all this, Steve’s outlook on life remains positive. “I feel I’m lucky because there are so many people in this country who are suffering with poverty or disease and they have no help. “I have landed on my feet in terms of care – with two complete nutters! “There are countless millions around the world who cannot afford a bowl of rice to put on the table. If there’s a God in this universe then I am lucky.”
Skydiver Amanda Taylor with Steve Coke who suffers from motor neurone disease