MORE than 100,000 people in the UK have Multiple Sclerosis (MS) – 1,950 in Oxfordshire alone.
Usually diagnosed when people are in their 20s and 30s, it is an unpredictable disease of the central nervous system, which disrupts the flow of information from the brain and body, slowly robbing sufferers of the ability to control their own bodies and leaving them at the mercy of debilitating, physical relapses.
Bruce Barrett was only 31, and had just become a father for the second time, when he was diagnosed with MS.
Now 37, the former insurance broker, said: “My condition has deteriorated in the last six years and for the last year has been secondary progressive.
“I had to give up work and have had a lot of relapses over a short time.
“My left hand shakes constantly, which makes dressing and eating difficult. And I have had bladder and bowel problems.
“Our boys, Sebastian, 10 and Fin, six, know that daddy’s legs do not work properly and it’s difficult not to be able to run around with them.
“When Fin was a baby I could not pick him up if he was crying, and if Seb wants to go to the park and kick a ball around, he goes with friends, as it’s not something I can do.
“But I read to them a lot, and they read to me.
“We play board games and I have talked to them both, at different levels, about why my body does not work how it should and they seem to accept it.”
Mr Barrett, from Carterton, said: “I was sent to the JR for an MRI scan after experiencing numbness in my feet and then down one side of my body.
“I thought it was something minor but the doctors told me it was MS and this was my first ‘relapse’.
“It was awful. There were a lot of tears, both from me and my wife Amy. And a lot of questions, including: “What will happen next?”. But no one knows what will happen with MS.”
He continued: “My condition can be depressing, but I try to tackle it positively.
“We live in a three-storey townhouse and I have insisted we keep our bedroom on the top floor, even though it would be easier to sleep downstairs.
“I just keep my i-Pod charged with music, put it on and drag myself up the two flights of stairs, pausing to look at pictures of Amy and I for inspiration on the way.”
While MS is not fatal, at present there is no cure, and most sufferers use a variety of drugs to treat their symptoms and relapses.
Mr Barrett added: “I had to wait longer than I should have to meet an MS nurse after my diagnosis, and as a result I went on to the internet for information, which was a bad idea, as I only found the worst possible scenarios.
“Thankfully I did find the MS Society website though, and through that the West Oxfordshire branch, which offers complementary therapies and social meetings and the chance to talk to others with MS.
“I have not gone down the drug route yet, as I want to avoid the side-effects they can bring for as long as possible.
“But I am part-way through a fatigue management course at the Nuffield Orthopaedic Centre in Oxford.
“I also work out regularly in the Revolutionz Gym in Carterton and I am now looking into taking-up wheelchair rugby, which I hope I can eventually play with my sons.”
He added: “There is no explanation why I got MS. Some people believe it is a lack of sunlight and Vitamin D. Others think it is linked to diet or the environment.
“I choose to think that I have simply had a bad roll of the dice and need to get on with it. And while I do have MS, I am no different to anyone else.”
From a marathon to a wheelchair
JEFF Samways, 63, from Botley, Oxford, was running in the 1992 Abingdon Marathon when he first experienced symptoms of MS.
He said: “I crossed the finish line limping.
“I ran marathons and half marathons all the time back then and just thought it was an injury, but I went to get it checked out and the doctors told me I had MS.
Jeff Samways with wife Tracey and their Yorkshire terrier puppy Poppy
“I had caught the bus to the Radcliffe Infirmary for my appointment and coming back I just remember being absolutely stunned and shocked.”
A production worker at the Cowley Rover factory at the time, and a father of three young children, Mr Samways added: “There was a lady I knew who lived locally with MS and I went to see her to see what I was in for. Right there and then I decided I was going to have to tackle this disease head-on.
“After being moved from the production line at work into the office, I worked on for six years before I got too immobile to work. And by that time I had got involved with the Oxford MS Society branch and started fundraising for them.”
For the last 21 years, Mr Samways has raised money for the society – an amount which now exceeds £250,000.
Now in a wheelchair full-time, he said: “About 10 years, after my first marriage ended, I met my second wife Tracey, and she has helped me get through some of the worst times.
“She is now my carer and together we give talks to groups, run bingo and a bible group.
“Looking back I do not think I have ever asked: “Why me?” I’ve always thought I was glad I got it rather than one of my brothers or my sister.”
Turning a tragedy into fundraising farce
INSPIRED by the struggle of an uncle whose life was blighted by Multiple Sclerosis, TV repairman Raymond Hopkins reinvented himself as a playwright and has donated the £30,000 he has made so far, to the search for a cure.
Currently writing his 10th comedy farce, Mr Hopkins, 70, was born, grew up and still lives in Long Hanborough.
Ray Hopkins at work on a script with his tougest critic – wife Jacqueline
He said: “As a child, my uncle Harry Clack, who lived in Combe, near Witney, developed MS.
“I remember my feelings of shock and sadness when I would see him.
“I wanted to help him, but there was nothing I could do, and back then there was little the doctors could do to ease his suffering either.
“But that wish to do something stayed with me and later in life, MS, and wanting to help to find a cure for it, would change pretty much everything for me.”
In 1996, father-of-two Mr Hopkins was a self-employed television engineer, but spent some of his spare time helping with the sound and lighting for the now disbanded amateur dramatic group, The Botley Players. He said: “One day I just started writing a play, and 18 months later I had written Love Begins at Fifty, a farce about a man turning 50 who decides to try and recapture his youth by applying to lonely heart ads.”
Love Begins at Fifty was staged by the Hanborough Players in 1998 and friends of Mr Hopkins from Torquay then used it as their summer show in the resort the following year.
“When it ended up making £1,000 I donated it straight to the MS Society and thought ‘That was pretty good!’ So I started writing another play.”
Mr Hopkins writes his plays in the kitchen of his home, on A4 sheets of paper, using a pencil.
A friend then types each act as it is finished and his wife Jacqueline and other friends read them, before they are rewritten, usually around six times.
Mr Hopkins added: “If there are plenty of laughs, great. If there were long silences and people checking their watch, that would not be a good sign...!
“But thankfully people seem to find my plays funny and I will just keep on writing plays while people like them and until they have found a cure for MS.”
Mark Haymes, area fundraiser for the MS Society, said: “We’re really thankful to Ray for all he has done.
Money raised for the MS Society is spent on our world leading research programme and on continuing support for the 100,000 people with MS across the UK.”
For more details about his work, see raymondhopkins.com
FIND OUT MORE FROM BRANCH MEMBERS
THE exact cause of MS is unknown but common symptoms range from extreme fatigue to problems with balance, hearing and sight and a loss of mobility.
The disease is classed in four forms: relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing, depending on how advanced it is.
The most common type, relapsing-remitting MS, affects around 85 per cent of sufferers and can involve long periods of better health between relapses or attacks of debilitating illness. People with progressive forms of MS often experience shorter periods between these attacks.
It is thought to be caused by a combination of environmental and genetic factors.
One theory is that some people have certain groups of genes that make them more likely to develop MS.
The Oxford and District Branch of the MS Society, which works to support people with the disease and raise funds for research, will be collecting at the Westgate Centre, Oxford, today.
Shoppers will be invited to take a break and have a piece of cake in return for a donation to MS Society funds.
The West Oxfordshire branch of the MS Society offers physiotherapy, massage and podiatry, socials, outings and a young people’s group.
For more details, contact the branch helpline on 0800 9179790.
Alternatively, contact chairman Peter Branson on 01608 645988 or firstname.lastname@example.org