Multiple Sclerosis

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This week I met Trudie Eason, the Chair of the local Multiple Sclerosis (MS) Society.

She is a tall woman, with iron grey hair, shrewd eyes and a broad smile. The Victorians would undoubtedly have called her “handsome”. I knew she had MS, but when we met all I was conscious of was the extraordinary energy about her, which belied her disability. I didn’t immediately notice her crutch. Nor did I realise that every day she battles crippling fatigue.

Trudie and I met with Dee Barber, the MS Society’s local Welfare Support Officer, whom Trudie had brought along for support. She laughed “Some days I just can’t find the words. They’re in my head. I just can’t get them out. Some times it feels as if I’m trying to speak with someone else’s tongue.”

She explained that people with MS often don’t like to go out to eat, because the muscles in their faces, mouths and tongues can go into spasm, leading to choking or food rocketing across the table. She said “On a good day, nobody would know. On a bad day, I can’t hold a knife and fork and struggle to eat with a spoon.”

“That’s the thing” she added “It’s so hard to predict what the disease will do. You just can’t tell how it will strike. You could go into a room full of people with MS and nobody would have exactly the same symptoms.”

There is a great deal of ignorance about MS. Many people associate it with the tragic disability and early death of the famous young cellist Jacqueline Du Pre. Some have read harrowing accounts of some sufferers’ quest to be allowed to die at a time of their own choosing. As a consequence, many people see a diagnosis as a death warrant – and yet the life expectancy of people with MS is only slightly lower than that of other people.

Though the disease can sometimes attack with terrible ferocity and cruelty, many people cope with it, learn preventative strategies and live fulfilling lives.

Multiple sclerosis is the most common disabling neurological disorder affecting young adults and it’s estimated that some 85,000 people in the UK have it.

Seven people are diagnosed with MS every day, commonly between the ages of 20 and 40. Most are women. It is not known what causes the disease, though there appear to be some environmental factors.

MS is the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage means messages between the brain and the body are not transmitted as they should be, leading to a range of symptoms including loss of sight and mobility, pain, fatigue and depression. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

Trudie used once to be highly active. She and her late husband used to go pot-holing, sailing, diving and swimming. They had planned an active retirement, but her husband died and the symptoms which had already begun, became very much worse. Now fatigue and loss of energy are two of Trudie’s greatest problems. She said “Some days things can seem fine and I’ll be able to do a lot, but I know I’ll pay for it. Generally, I try to do only one big thing in a day, but it doesn’t always work out like that.”

She added: “Sometimes people who don’t have the illness think we are lazy. We aren’t. It’s just that you haven’t got the energy to do anything. It’s the worst sort of tiredness. It feels like you’ve run a marathon, but as far as other people can see, you’ve done nothing.”

One of the greatest problems for people with MS is other people’s perceptions of the illness. People who normally have reasonably good co-ordination can suddenly lose muscle control. Even if this is temporary it can be deeply distressing, not least if passers by believe the person to be drunk.

Trudie now has a stairlift, but before it was fitted was more than once left trapped up or downstairs. Even now, she keeps bottled water upstairs in case of emergency. She has a supportive family and helpful neighbours, but they are not always there. She laughed as she told me that she once had to accost a total stranger and ask them to go upstairs to fetch something for her. Not for the first time I noted how often she uses laughter to describe the most difficult circumstances. “You have to have a sense of humour” she said “It’s the only way to survive.”

There is no cure for MS and few effective treatments, but Trudie and Dee stress that living with MS can be made bearable with proper information and support.

Dee said “It’s vitally important that people who have been diagnosed or those looking after them get in touch with us before there is a crisis. Crises do happen, but they are less difficult to handle if people are prepared and well-informed.”

Dee gave the example of a middle-aged local woman who developed the disease. The family did not seek help until the woman was hospitalised and subsequently became wheelchair-bound.
The MS Society assessed the family’s finances and referred them to appropriate agencies. It worked with the couple to ensure that their house was properly adapted and provided support to the husband who, for the first time, had to run a household.
Dee said: “With our support, they have been able to accept the situation and move forward. Day to day living is not without its problems, but they now feel confident enough to ring the MS Society to get extra support before things reach crisis level.” And there are bonuses. Since she became ill, the woman concerned has become an accomplished painter, something she would never have previously considered.

This family and others like them have come to accept that though there is not yet a cure for MS, preventative strategies and treatments can help reduce relapse rates and tackle symptoms. Scientists are making major discoveries in stem cell therapy, and this offers hope for the future. In the meanwhile the role of charities such as the MS Society – and the Multiple Sclerosis Treatment Centre in Southwick with which the Society works – is crucially important.

The MS Society is the UK’s largest charity for people affected by MS. The national Society runs an effective helpline and website. However, there is no substitute for the personal response provided by local services.

The local branch, though its paid worker and volunteers, provides advice, support and information. In addition, it can provide assistance with practical matters, such as applying for Disability Living Allowance – a process which can be both distressing and demeaning. As Trudie said “In order to fight the disease, you have to be positive, but in order to succeed in a DLA application you have to be honest about all the things you can’t do. It can be terribly depressing and you need someone there to help you.”

Many families also need adaptations to their houses, but in some cases there are long waiting lists – such as two years for a stair lift. Dee explained that the MS Society can help people push for the right adaptations and successfully apply for grant aid to part fund the things they need. Some are trapped in their homes and unable to access services. The Society can usually help with transport – provided they have enough drivers.

I asked Dee and Trudie what message they wished to send to readers. Dee said: “I’d tell them if they have symptoms to get help – not to wait for a crisis, but to contact us early. We can help. I’d also want to say that we desperately need more volunteers, especially drivers and fundraisers. And, of course, we always need donations.”

Trudie said “I’d tell them that though I can’t do the things I’d planned, I have abseiled since I’ve had MS. And very soon I’m going to go up in a hot air balloon. It won’t be across the desert as my husband and I had planned, but it will be across Sussex with my granddaughter.

“This is not the life I anticipated or would have chosen, but it’s the life I’ve got.” She added “I don’t mind being disabled. But I refuse to be an invalid.”

The MS Society can be contacted on 01273 591955. The National Helpline is 0808 800 8000.

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