Multiple sclerosis can strike at any time – with debilitating consequences. SARAH FOSTER talks to two people who have MS about how they cope with the condition.
Tina Coulter used to be a bit of a gym bunny, making time to work out two or three times a week.
These days she doesn’t know if she’ll be able to walk even short distances without the aid of her sticks.
Like the thousands of others who have been diagnosed with multiple sclerosis, Tina knows her health is gradually getting worse.
There is no cure for MS and those with the condition will often find that their mobility and energy levels decrease over the years.
For Tina, that’s meant swapping those high-energy gym sessions for weekly yoga and physiotherapy classes instead.
But the 51-year-old is determined to make the most of what she can do, rather than lament what she’s lost.
‘It would be easy just to sit in a corner and feel sorry for myself,’ she says.
‘That’s not the kind of person I was before and it’s not the kind of person I am now.
‘Multiple sclerosis is a very individual thing in the way that it depends on how the individual deals with the impact of it on them. But it does impact on every single part of daily life.
‘It’s understandable that people can and do feel alone. But they are not alone.’
Tina from Farlington, Portsmouth, was diagnosed with MS in 1997.
What causes the neurological condition isn’t known, but symptoms can range from fatigue and loss of vision to mobility problems and balance issues.
The mum-of-two first realised something was wrong when she tried to complete a stretching exercise in the gym and realised her left side had gone numb.
When the numbness didn’t go away she consulted her GP and was eventually admitted to Portsmouth’s Queen Alexandra Hospital and then referred to the neurological unit at Southampton General.
‘When I heard I had MS my first thought was I’d be in a wheelchair. But not everybody who has MS ends up in a wheelchair.
‘It did take me a few years to change my way of thinking, to be able to say that it had happened to me but that I might have 10, 15 or 20 years, so what was I going to do in the meantime?’
These days Tina does need a wheelchair for longer distances and also uses sticks and a walker.
Extreme fatigue can be one of the most debilitating symptoms and that’s something those who don’t have MS often overlook, according to Tina.
‘Because I’m not in a wheelchair fully that doesn’t mean I don’t have problems,’ she adds.
‘That’s one of the big frustrations for people with MS. They look okay so they are judged very quickly by other people.
‘I have a blue [disabled parking scheme] badge and I do know there’s a lot of abuse going on with that out there but I’ve got a reduced amount of energy so I’m very careful how I spend that energy.’
As a member of the Portsmouth and district branch of the MS Society, Tina has found friendship and plenty of practical support.
In August she was one of a group of MS sufferers invited to take a trip out with disabled sailor Geoff Holt on his specially-adapted boat, Wetwheels.
Gunwharf Quays will be raising money for the MS Society this year (see panel) and the sailing excursion was a chance for people like Tina to experience something that would normally be off-limits.
‘For years I did love fairground rides and things like that but I wouldn’t even think about that now,’ she says.
‘To be out on the water at speed and to feel safe was brilliant. I thoroughly enjoyed it.’
She adds: ‘I’m a very independent person and I want to stay that way so I need to do exercise. With the MS Society I have access to group exercise sessions and we go to yoga and physiotherapy at local gyms to keep us active. I also get moral support from people within the group.
‘MS is incurable and they don’t know what causes it. The best thing I can do is manage the symptoms as and when they come up.
‘At the end of the day, I don’t know if I can do tomorrow what I can do today.’
‘EVERY YEAR IT GETS A LITTLE BIT WORSE’
‘I used to think that fatigue meant being tired,’ says Gary Roberts.
‘But it doesn’t. Fatigue whacks you out for days.’
Gary had more than six years to prepare for his MS diagnosis but that doesn’t mean it wasn’t still a shock.
The 55-year-old had suffered from recurring bouts of numbness in his feet for years and other symptoms gradually began to make life harder for him.
In the end, MS brought his 30-year career with the Royal Navy to an end.
But although life as Gary knew it had to change, he’s done his best to adapt to what it’s like now.
After being medically discharged from the navy he found another full-time job. And when that became too much he switched to a part-time role.
Now he doesn’t work at all. But he concentrates on what he can do, not what he can’t, and plays an active role in the Portsmouth branch of the MS Society.
‘Every year it gets a little bit worse,’ he explains. ‘The underlying thing with MS is that you can have good days and bad days.
‘Some days I might be able to walk 20 yards but the next day I can’t. You can’t predict that. You’ve got to plan things, so to do an hour’s yoga in the morning will mean planning nothing else for that day.
‘It restricts what you can do. I do find it frustrating but I try and power through it and focus on what I can do.’
He also enjoyed the chance to meet Geoff Holt and experience the speed and thrill of taking a trip out on Wetwheels.
And he says the MS Society is there to offer support and advice to all.
‘Within the area there are a lot of people with MS and it’s nice for people who aren’t active members to know that it’s there if it’s needed,’ says Gary, from Southsea.
‘There are people who will understand.’
MANY DIFFERENT SYMPTOMS
MS can cause a wide range of symptoms, and there is no definitive list of early signs. What could be a first symptom for one person may never be experienced by another.
People can have different symptoms at different times and, although some are very common, there is no typical pattern that applies to everyone.
A problem with vision is one of the more obvious early symptoms, but this is often because it is a more definite symptom as opposed to general neurological issues such as numbness or tingling.
Many MS symptoms may also be symptoms of other, more common conditions or ailments. Only a neurologist can diagnose MS.
n To find out more about the Portsmouth and district branch of the MS Society call (023) 9269 6559 or e-mail email@example.com
n Log on to mssociety.org.uk for more information.
CAN YOU FIREWALK?
Daredevils can raise money for the MS Society by taking part in a firewalk challenge at Gunwharf Quays on November 5.
The red hot fundraising event will give adrenaline junkies a chance to face their fears and help raise money for a worthy cause.
After an intensive two-hour training session with firewalk experts, participants will walk 20ft across hot coals.
Around 50 people are diagnosed with MS each week.
To take part, participants can register online at mssociety.org.uk/firewalk or by calling Mark Haymes on 0208 438 0936. There is a minimum sponsorship of £125.