All Jean Parr ever wanted was to walk her children to school, while her friend Elaine Clegg would love to arrange a day out without worrying whether she will be up to it. The friends have one overwhelming thing in common - they are in constant pain, suffering from what doctors describe as a "very cruel disease." The nerves in their spines have been irreparably damaged by a condition known as arachnoditis, which results in a spider's web effect, restricting movement. They spoke to Helen Mead about their daily struggle.

JEAN PARR always wanted to walk her children to school. But because of a debilitating medical condition, the mother-of-two was denied that pleasure. "I would watch them from the window and wish I could go with them, but I just had to sit there and wave them off," she says.

School sports days also left a lump in her throat. "They were a torment. At the end of the day there was always a mums' race. I knew my children would be thinking 'I wish my mum could run'. It was so upsetting."

A former nurse, Jean was struck down by a double dose of flu in 1975. She then developed Gillian Barry Syndrome - a creeping paralysis which left her unable to move from the waist down. In searching for a cause, doctors sent her for a myleogram, in which dye is injected into the spine before an x-ray.

Says the mother-of-two: "They found nothing and I regained movement, so it was put down to a virus."

While Jean regained the feeling in her lower body, she developed back problems which have plagued her ever since. Pain restricts her mobility, and she has involuntary movements in her legs. She explains: "My legs can be physically jumping and I'll also have numb patches. My husband says its like sleeping next to someone who rides a bike in bed. Sometimes when I'm sitting or lying down I look at my legs and I can see my calf muscles moving."

She has spent periods in a wheelchair, and investigations to find out what was wrong have included a further three myleograms, but it was not until 1981 that an orthopaedic surgeon diagnosed the incurable condition arachnoditis - an inflammation of the membrane covering the spinal cord.

Says Jean: "It's obviously not good news to find out that it's a condition which has no cure - but I was pleased just to find out what was wrong, that it had a name."

The nerves in her spine have become twisted and the fluid which surrounds them squeezed, meaning they cannot not move freely as they are supposed to.

It triggers odd reactions in other parts of her body: "I can scratch above my knee and feel it in the ball of my foot. At other times it feels like someone is ripping my skin off."

The pain in intense, and both Jean, of Shelf, and Elaine, of Wyke, get through each day with the help of painkillers. Says Jean: "You know you will be all right at certain times because you've just taken a tablet, but at other times you cope less well as it's wearing off."

Last year she came across the name of a London-based specialist on the Internet, who performed a seven-hour operation on her back to free up the nerves. This has given her a new lease of life but Jean says it will not last forever: "The problem grows back at three times the rate."

The causes of arachnoditis - so-called because of the spider's web-like effect of the twisted nerves - are varied: an accident, infection, or medical procedures such as epidurals and myleograms

Mother-of-three Elaine has all the symptoms, but has never been officially diagnosed. She says that is half the battle. It is still not a widely recognised condition and does not show up on normal x-rays. National charity the Arachnoditis Trust estimates that 70 per cent of doctors are not familiar with it, and patients are still being told pain is "all in the mind."

Elaine, who has grown-up children and is now a grandma, had to wear a steel corset to help minimise her discomfort while pregnant. Both women were determined to have children, despite the increased pain.

Elaine experiences what feel like electric shocks in her legs, "Then there's the feeling of icy cold water being poured down them, and burning sensations."

She too has had surgery, including having bone removed to free the nerve roots. which has helped short-term. "If I didn't take painkillers I couldn't imagine what life would be like."

The disease also causes bladder and bowel problems and attacks the immune system, leaving the sufferer prone to infections. Fortunately, the women, who met through the National Backpain Association, have supportive husbands.

Says Jean, whose children are now in their teens: "It has been hard at times, raising a family, but when you have not known anything else, you manage."

She says becoming a Christian has helped her get through the worst times: "Two years ago I did not believe there was a God because he would not have done this to me. Now I believe and am comforted that there is someone to talk to when I'm up in the middle of the night and there's no-one around."

The Arachnoditis Trust can be contacted at PO Box 27, Stoneycroft, Liverpool L13 5RS. Tel: 0151 259 0222. Jean Parr can be contacted at 35 Eskdale Avenue, Shelf, Halifax HX3 7NH.

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