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

Kentish Express Ashford & District - - COUNTRYFILE -

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).

Bad news

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.”

Pic­ture by Barry Duffield pd1167197

Sky­diver Amanda Tay­lor with Steve Coke who suf­fers from mo­tor neu­rone dis­ease

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