All About Multiple Sclerosis

More MS news articles for June 2004

'Exercise is a chore but a must'

Multiple sclerosis sufferer Edith Rifkind tells Cassandra Jardine how a new book has helped her to remain active

June 4, 2004
Cassandra Jardine
The Daily Telegraph

With her husband, Sir Malcolm, due to join the shadow cabinet and, some say, lead it after the next election, Lady Edith Rifkind has a busy time coming up. Although she needs to be as fit as possible to support him, she considers it a "joke" that her latest public role is to promote a new exercise regime. "I am one of the world's worst," she admits. "For me, exercise is a chore but a must, rather than something that comes naturally."

Her last attempt to get fit and lose weight was depressing. Ten years ago, she joined a gym in Edinburgh, but, despite regular visits, made no headway. "I just couldn't improve my physical condition," she says. "It even took me ages to get showered and dressed afterwards. I assumed I was a physical incompetent."

However, in 1997, the Rifkinds' personal annus horribilis, she learnt why exercising was proving to be such an uphill struggle. Soon after the Conservative Party lost the general election and her husband was ousted from his Edinburgh seat, she discovered, as she puts it, that they were both suffering from incurable diseases. His is an addiction to politics; hers is multiple sclerosis.

The diagnosis explained a lot. For several years, she had mysteriously fallen off chairs while standing on them to shut windows, wobbled on her bike and been unable to "frog it" when swimming breaststroke. "I just thought, 'Bad day. I must be tired'," she says, in her brisk way.
She assumed she was just one of those "silly women" who do too much: she was running homes in Edinburgh and London, bringing up two teenagers, handling the constituency correspondence, caring for her elderly mother and accompanying her husband on tours while he was foreign secretary.

Once Lady Edith knew the problem was neurological, she knew exactly what it might mean. As a former zoologist and medical researcher she met her husband in post-UDI Rhodesia when she was researching tsetse flies and he was lecturing on British government she did not need multiple sclerosis to be explained to her.

The Rifkinds have had seven years now to get used to their incurable diseases. While her husband has been working as a consultant and hoping to get back into Parliament, Lady Edith has been adjusting to her physical condition. In her case, the disease is one-sided. She has an "unreliable" left leg, which has, many times, left her sprawling on the kitchen floor, and a left hand that is a "liability" because she can hold things with it but not put them down. Will the right side go, too? "No one knows, tiddly-pom," she replies.

She has the primary progressive form of the disease, which means no sudden downturns and no remissions just slow degeneration. But she is not given to self-pity. "I get more frustrated than depressed," she says. "It must be much worse if you suddenly lose the use of a limb in an accident."

With the help of an adapted car and an electric buggy, Lady Edith can get about and walk the dog. She shops online and still cooks, "though how can you peel an onion with only one hand?" Her children often take her out, pushing her around in her wheelchair and so, of course, does her husband. Like many MS sufferers, she is sensitive to heat, which means tropical trips are now off. "It doesn't bother my husband; he hates extreme temperatures," she says. What irks her more is not being able to leap to her feet to answer the door or the telephone.

She feels fortunate that she has little pain, except when hit by periodic bouts of trigeminal neuralgia on the left side of her face. Her only regret is that she didn't take more action to delay the loss of mobility. "If you don't use it, you lose it," is the saying about limb function, but Lady Edith started seeing a physiotherapist only two years ago. Picking up her copy of Exercises for People with MS, she wonders whether she might have done more to help herself had it been published sooner. "I gave up too easily," she says. "If I find something difficult, I don't persist. I might have been able to preserve more of my independence."

This new booklet, produced by the Multiple Sclerosis Trust and written by Liz Betts, a physiotherapist who has worked with many MS patients, encourages sufferers to be more active. "What's good about the book is that it is so realistic," says Lady Edith. "You are expected to exercise only two or three times a week and to repeat each exercise a few times."
Betts reminds patients not to compensate for their weak side by putting more weight on the reliable leg, thereby tilting their pelvis into an awkward position, and encourages them to breathe properly for their general wellbeing.

The exercises take into account the mobility problems that come with MS: some can be done on the edge of a bed or in a chair. There are also specific solutions for dealing with leg spasms and other common MS-related problems, including supersensitive skin.

"If this book had been put into my hand five or six years ago," she says, "it might have influenced me to try and do a bit more."

Lady Edith is, however, determined not to let her condition ruin their lives. Before her husband put himself forward for Kensington and Chelsea, the seat vacated by Michael Portillo, they discussed long and hard whether they could cope if he were to win this safest of seats. For him, it would mean a return to the world he loves, and, for his party, the return of a much-needed man of experience (23 years in Parliament, 18 as a minister) to the Tory benches.

"Politics is his passion," she says. "He is too young [they are both 57] and not inclined to be a carer. And I am fortunate in being able to afford help." When he won the nomination in February, she was wholeheartedly behind him. But what will it mean for her? These days, she believes it is no great disadvantage for an MP to have a wife who can't always be by his side. "The role of the constituency wife is overrated," she says. "The days of two for one are over. But I shall work in the constituency office before the election. I can do telephone canvassing and be a one-handed typist."

As for the social life, she has it all worked out. "It's not possible to hold a walking stick, shake hands, hold a glass and eat canapés all with one hand," she says. "So now, if I'm invited to a drinks party, I either don't go or I share my husband's drink."

Keeping the effects of MS at bay

Half of the 85,000 people in Britain who have MS don't exercise regularly, according to a recent survey. The starting point is posture, which is often poor because a fear of falling causes sufferers to drop their centre of gravity and droop from the chest to be a little closer to the floor. This affects their ability to move fluently. It is also likely to cause backache and to squash the abdomen and lungs, restricting eating and breathing.

Look: use a mirror to see how you stand, perhaps while in your underwear so you can look at the bony point of your hips. Make sure that both bony points are at the same level and pointing forward.

Feel: if you have no mirror, stand with your tummy against the kitchen sink to check your hip bones are level and pointing in the right direction.

Check: try to incorporate checking your posture into your daily routine, perhaps when you are watching television.

Walk: choose a special place - a hallway, for example - where you can concentrate on how you are walking. Put stickers on a doorframe as a reminder to concentrate as you go through it.

Balance: stand with your feet close together. When you are steady, let go of your support and hold your balance for 20 seconds. Try this with both eyes closed.

Breathe: if you tend to breathe quickly, spend a few minutes each day bringing your breathing down to a lower level.

Exercises for People with MS, by Liz Betts, can be downloaded from . For a hard copy, call the MS Trust on 01462 476700

Copyright © 2004, The Daily Telegraph