‘MS is not a death sentence’

LIGHTNING isn’t supposed to strike twice, but you can’t blame Mike Carr for being worried. Mike, 50, who was Middlesbrough’s youngest mayor nine years ago, has had to watch both his brothers suffer after developing one of the most feared neurological diseases – multiple sclerosis, or MS as it is universally known. Unsurprisingly, Mike and his wider family have been raising money for research into MS for years.

Tom Carr, 56, who lives in Belmont, Durham City, was working as an engineer at British Steel Hartlepool when he was diagnosed with MS at the age of 22. Doctors told him he would probably not live more than 20 years and could die a lot sooner. But Tom fought the illness and managed to keep mobile for several years.

Like many people with MS – though not all – he ended up in a wheelchair in his late 20s. Gradually declining over the years, although never losing his sense of humour or his love for Sunderland Football Club, Tom can now do very little for himself and has to be looked after seven days a week by his dedicated carer, Christine.

“Christine gets him up each day, caring for him in every way, feeding him, washing him, giving him his medication, taking him out and finally putting him to bed at night. She is Tom’s lifeline and in many ways his reason for keeping up the fight,” says Mike.

It was bad enough when Tom developed MS, but in 2005, after a series of health problems, his younger brother, Paul, who was establishing an international reputation as an innovative fashion designer, was also diagnosed with it.

From being someone who at the height of his success had his designs exhibited in New York and ran a small clothing factory in Newcastle, Paul, now 52, found himself battling the same illness as his older brother.

“Having seen Tom decline slowly, Paul knew what to expect,” says Mike, a business consultant who lives in Linthorpe, Middlesbrough. “Paul’s decline has been a little quicker, but he remains positive. He can only walk a short distance, but he will soon have an electric wheelchair which should give him greater independence.”

While researchers believe there may well be a genetic element to MS, a consultant has told Mike that it is very unusual to find a family where two out four siblings (Mike also has a sister, Jeanne) have been affected by the condition.

“Jeanne, who lives in Washington, Tyne and Wear, escaped MS but actually has chronic arthritis, which is also a disease of the immune system,” says Mike.

Despite Jeanne’s own illness, she and Mike do what they can to help their two brothers cope with MS.

Caused by damage to the nervous system, which interferes with messages between the brain and the body, symptoms of MS range from loss of mobility and sight to fatigue, depression and cognitive problems.

Some people have long periods of relapse and remission while others find that it progresses steadily.

Despite reassurances from specialists, Mike, who has four children, can’t help worrying what the future might bring.

“There isn’t a day that goes by where I don’t think I might end up in the same situation as Tom and Paul,”

he says. “It doesn’t cause me to get depressed, if anything, it makes me appreciate the things I have got.”

But the outlook for his children, Joseph, 23, Ruth, 21, Katy, 11 and Ben, six, is a real concern.

“Will my children have to face MS one day? The chances are against it but, then again, the same is true of having two brothers with the illness in one family.” Fortunately, Mike’s children are all healthy and carrying on the tradition of raising money for MS patients. “Katy raised £30 for the local neurological unit by running a cake stall at her school. She has got her priorities right,” he says.

As someone who has been active in the Teesside branch of the MS Society for years – he currently chairs the organisation – Mike is looking forward to this summer’s national MS Society convention at The Sage in Gateshead from June 12 to 14. He is particularly keen to hear news of new treatments.

DESPITE millions being invested in research there is still no cure for MS and few effective treatments. However, there is a glimmer of hope on the horizon that a new generation of MS drugs is in the pipeline.

One promising drug is alemtuzamab, which was originally developed to treat a form of leukaemia. There is increasing evidence that the drug can help slow down and even reverse the early symptoms of MS.

One of the first MS patients in the country to benefit from alemtuzamab was 16-year-old Gateshead schoolgirl Patsy Peebles. Two years ago she was injected with the drug over five days, which restored her to near-normal levels of energy and mobility.

However, Patsy may need more treatment as some of her symptoms are beginning to return.

Professor David Bates, a leading neurologist based at Newcastle University, who treated Patsy, is expected to give more details about promising new drugs, including alemtuzamab, when he addresses the MS convention.

“We are involved in lots of drug trials,”

Prof Bates told The Northern Echo. “I think there is a degree of promise with alemtuzamab, but there is also a degree of risk.”

Prof Bates will tell the convention that there are a number of new anti- MS drugs which are due to present clinical trial results in the next few years.

“MS remains incurable, but it is now, for the first time, not untreatable. It is possible to help people and to begin to show that while we cannot cure it, we can perhaps slow, retard and reduce the effects,” he adds.

Only this week it was reported that another new drug, cladribine, initially developed as a leukaemia treatment, cut the chances of MS patients relapsing by more than 50 per cent, results described as “a huge step forward” by the MS Society.

Mike Carr is heartened at the prospect of new treatments and has words of comfort for recently diagnosed MS patients. “It is not a death sentence. With the right attitude and support from the people who love you, you should have a long life ahead of you. The prediction about Tom’s lifespan proved to be wrong to a large degree.”

■ mssociety.org.uk