The profile of the month is chosen by the MSIF editor from those submitted.

Lady Edith Rifkind

Year of diagnosis: 1997
Occupation: Former zoologist and medical researcher
Type of MS: Primary Progressive MS
Country: United Kingdom


Having formerly spent ten years working as a researcher in the Department of Medicine at Edinburgh University, delving into others’ case notes for my Professor, I recently started to think about my life history and the bearing nature and nurture might have on my MS.

I was born in Lancashire to Polish/Jewish parents and taken to South Africa as a baby. After their war experiences my parents were understandably over protective.

My early memories are of respiratory illnesses that were probably over-treated with sulphonamide drugs and later penicillin. My adenoids were removed at age four and my tonsils at 12. I was constantly plagued by sinusitis and chest infections.

Living in a sunny paradise, we ate fruit, vegetables and red meat in abundance. I did not like dairy produce and bread! I remember being told that “all children loved ice-cream” when I clearly would rather have a water-ice, and that I should have butter on my bread, eat my crusts and should not extract the contents from my sandwiches, whenever possible.

At the age of 14 I was sent from Rhodesia, where we were then living, to boarding school in Liverpool near to my mother’s relations. There I learned to eat quantities of white soggy bread and butter, and to drink milky hot drinks because I was cold. I had more than my fair share of coughs, colds and sinus infections! It was foggy and wet and I definitely missed the Vitamin D enhancing sunshine.

All was not doom and gloom because I did well academically and went on to study Zoology at London University. The respiratory tract problems continued and a pattern of frequent antibiotic use was established. I also continued to eat bread and butter and live in northern climes!!

After our marriage I went to live in Edinburgh where we have had a home ever since.
I had two uncomplicated pregnancies and few medical dramas other than minor gynaecological interventions. I had a severe viral flu in my mid twenties and gastrointestinal symptoms for years that eventually culminated in an appendix abscess in my mid forties.

I was involved in a road accident, going head first into the car dashboard, when I was nine. Mild concussion quickly resolved but the grotty state of my spine possibly dates that far back, compounded by a bruising stair fall 10 years later!

As a busy, working mother, daughter and politician’s wife I ran on coffee, snacks and frequent Vibramycin! As a by-product of one of my research projects I discovered I had lactase deficiency and gave up milk and cream but continued to eat cheese and yoghurt.

Since my MS diagnosis in1997, I have had a variety of food sensitivity tests and all (i.e. Applied Kinesiology, Vega testing and Elisa tests) indicated that I should avoid all dairy products, gluten grains, some nuts, fungi and kidney beans. I now pretty well stick to the “Best Bet” diet with occasional red meat and very dark chocolate. Early on I reacted to heavy metals and had all my mercury fillings removed and avoided inshore fish! I also have a metabolic screen done from time to time and according to my husband, take enough supplements to rattle.

In all honesty I have to admit that everything I have done seems to have had little impact on the progress of my Primary Progressive MS although Vitamin B12 and some other compounds definitely make me feel better. However it is equally true that without having taken these various steps, my quality of life might not be as good as it is.
---

The following article about Lady Edith Rifkind appeared in London’s Daily Telegraph on 04 Jun 2004. The author is Cassandra Jardine.


With her husband, Sir Malcolm Rifkind, due to join the UK shadow cabinet - and, some say, lead it - after the next general 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 parliamentary 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 Rifkind 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 MS 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, 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 Rifkind 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 people with MS, 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 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 Rifkind. "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."

Edith Rifkind 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."


See http://www.mstrust.org.uk for more information about Liz Betts’ booklet, Exercises for People with MS.

If you would like to contact Lady Rifkind please send your message to info@msif.org and we will pass on your e-mail.