MS is not the end

THE first sign of multiple sclerosis can be as simple as dropping your coffee cup. One day you can be feeling fine and the next you cannot see properly or your leg gives way from under you. For Christine Collins, 46, of Leeman Road, the first sign of MS came when she lost her balance and fell on to her son's cot.

Christine is now the welfare officer for the York branch of the MS Society, helping people apply for benefits and grants for equipment. She says: "If I had just one glass of wine I would be staggering down the road, I had numbness, I wet myself once. Then I fell in my son's cot."

The experience of Sue Rawnsley, 54, of Acaster Malbis, was different. Doctors who were treating her unexplained back pain at first dismissed the idea of MS because they thought at the time that people with MS did not suffer pain.

Sue, who now uses a wheelchair outside the house, and is cared for full time by her husband, Derek, says: "I was being treated for back pain because MS people didn't have pain. But they've realised now.

"When people have asked me were you upset when you were told you had MS, I say no. At last I knew what the pain and the symptoms were."

MS affects more women then men, it mostly strikes people between 20 and 40 and is more common in countries further away from the equator.

But there are no rules, no two people have MS in the same way. Pain, symptoms, progression, frequency of episode - all will be different for different people.

In York, there is an eight-year-old girl who has progressive MS. Other people will have one single episode of the disease in adulthood and live a perfectly normal life with no further incidents.

Every week about 50 people in the UK are diagnosed with the condition. And the MS Society wants every one of them to know that it is there to help, offer information and to provide people to talk to.

The theme of this year's MS Awareness Week, which begins on April 6, is Striking Back and it aims to show everyone with MS that diagnosis is not the end.

Sue and her husband Derek take full advantage of what the MS Society has to offer. For Derek, 63, it can be a lifeline.

He says: "If I asked for any help at all I would get it. But Sue's not as bad as some of the others. We go to the socials and some people are lifted out of the cars on hoists, they are the worst cases.

"I'm probably one of the lucky ones because I don't have so much to do."

When Christine's diagnosis was made, however, she at first blocked out any outside help.

She says: "I didn't want anything to do with MS Society for many years. It was 15 years before I thought about finding out some information. Then I felt it was the right time for me.

"It's almost as if it's a different life I'm living now, but I don't regret not doing it sooner, it was right for me."

The MS Society has been a part of Richard Hails' life since he was diagnosed in 1978. Now 54, Richard, of Haxby, is preparing to become chairman of the York branch in April.

He says: "The main thing about MS is the frustration, uncertainty, not being able to do things you could before and not knowing what's around the corner.

"At least with the society we get support from other people. We can meet up, talk, or you don't have to do any of that, you can just receive the information.

"We don't take ourselves too seriously and we have a sense of humour.

"I joined the society straight away, I wanted to know more about what MS was. All I knew about at the time was Jacqueline du Pre because she was in the headlines and people immediately thought I would end up in a wheelchair like she did.

"That can happen, but other people don't get anywhere near that bad."

Woodlands Respite Centre, Thief Lane, York, also provides a lifeline to people with MS. It provides short-term respite care and is funded by the MS Society. About 400 people a year use the services and special events are organised for young people with MS.

Mike O'Donovan, chief executive of the MS Society, says: "Like a lightening bolt from the blue, MS is totally unpredictable. Some people hardly notice they have it. Some have serious problems with sight, mobility, co-ordination, incontinence, pain and fatigue which come and go. Others quickly become severely disabled.

"We want to reach out to more people affected by MS than ever before and show them the many ways we can offer support.

"At the same time we want everyone to understand just what it's like to live with MS and ask them to help us to improve, and extend, the range of services we can offer."

MS fact file:

- MS occurs when there is damage to the protective material - or myelin - around the nerves in the central nervous system. When myelin is damaged,messages are slower or distorted or do not get through at all, causing symptoms of MS.

- An estimated two and a half million people world-wide have multiple sclerosis, including 85,000 in the UK.

- MS is the most common potentially disabling disease of the central nervous system affecting young adults in the western world.

- Every week around 50 people in the UK - rarely under 20 or over 55 - are diagnosed with MS. Three women are diagnosed for every two men.

- Symptoms include pain, deadening fatigue, problems with sight, mobility and co-ordination, forgetfulness, speech problems, numbness and depression.

- There are four types of MS: relapsing remitting MS where symptoms occur for a period then improve; primary progressive where symptoms are progressive from the start; secondary progressive when someone with relapsing remitting MS shows sustained deterioration for six months; and benign when someone suffers just one episode.

- Beta Interferon treatments are now available in the York area to some MS patients. The drug is not a cure but has been shown to slow down progression of the disease in some cases.

- The MS Society Freephone helpline is 0808 8008000. More than 15,000 calls are taken a year by trained counsellors, many of whom have MS.

- The Multiple Sclerosis Society's annual conference takes place at The Pavilions, Harrogate between 10.30am and 4pm on Saturday, May 17. To reserve a place contact Judy Tadman on 01484 302617.

- To contact the York branch of the MS Society call Richard Hails on 01904 769188.

Updated: 09:05 Monday, March 31, 2003