When Nicky Broyd got multiple sclerosis, she resigned herself to losing her mobility. But new therapies have helped her fight on
Tuesday April 13, 2004
It's meant to be the exercise we can all do. Fat, thin, tall or small,
we can all pound the pavements and fit a quick boost of aerobic activity
into our daily lives. I have a four-year-old who, with relatively little
practice, does it effortlessly. But what if walking is something you have
to think hard about? Imagine you couldn't walk and talk because you were
concentrating so much on putting one foot in front of the other that carrying
on a conversation at the same time was beyond you. Imagine that you couldn't
walk and look behind you to check for traffic because you lost your balance;
that you couldn't speed up to catch the bus; that open spaces, long corridors,
station concourses filled you with dread.
Five years ago I began to have difficulty walking. Soon afterwards, I was diagnosed with multiple sclerosis. It's estimated that one in 700 people in the UK has the disease; it is the most common neurological condition affecting young adults. I remember vividly my first symptoms: I was in the production office of Radio Five Live on a Friday in August when I began to lose sensation in my legs. It felt as if I had a dead leg. I confided in one of my colleagues, who began ringing medical contacts. I wasn't worried until the loss of sensation began to spread over my thighs to my middle. I could literally pinch my skin and not feel it; I lost the feeling in my feet and couldn't stand or walk properly because I could no longer feel the floor. My husband - we had been married for a year - was called. I was dispatched to hospital; and that was the end of my life as I knew it.
A month later, days before my 33rd birthday, I was told I had relapsing remitting multiple sclerosis, which, roughly translated, means MS that comes and goes, and that for the rest of my life I could expect to have similar attacks to the one I had experienced. The registrar said: "You're an intelligent woman. You've probably already worked out that you have MS." I hadn't. In one sentence he had told me I had a chronic, life-changing illness, and that I wasn't as bright as I thought I was.
There began a period of research more intensive than anything I had done for work. I read everything I could: I learned that MS affects more women than men, that you're more likely to suffer the further away from the equator you live, and that there is no cure. I'd like to tell you I'm one of those remarkable people who use illness as a positive, who use it to turn their lives around ... but I'm not. Getting MS is one of the worst things that has ever happened to me.
It's true that in some ways I have changed my life for the better since the diagnosis. I always wanted to work part-time, and now I do - I just wish I could have made the decision without getting a chronic illness. MS isn't something you necessarily pass on to your children, and once you're diagnosed, you are advised to start a family sooner rather than later, in case the condition deteriorates rapidly - so I now have a beautiful daughter. But I could have got pregnant without getting ill, and although I've moved home and now live closer to my family so that they can offer me support when times are bad, I could have done that, too, without getting ill.
MS hasn't made me a better person. In fact, in some ways, it's made me less like the person I want to be. These days, whenever I read those stories in the tabloids about someone getting seemingly unnecessary treatment on the NHS, I rant and rave: surely people with MS have a more deserving case? But that's not the person I want to be. I'm angry that MS doesn't get the coverage that other major illnesses do and wish that someone really famous will get it to raise its profile. See? I'm not nice, and I never wanted to think like this. I don't want to live like this either. I don't want to watch my diet meticulously, I don't want to be intimately acquainted with the vagaries of the NHS, I don't want to sit in waiting rooms with ill people or get attacks that leave me unable to feed myself or dress myself or hold my little girl.
In the five years since my diagnosis I have tried plenty of things. I spent 18 months on an interferon drug but felt no gain from it. I now know steroids can shorten the life of a relapse and, through the help of the Breakspear environmental hospital in Hertfordshire, I know that vitamin B12 reaches the parts other vitamins don't. Perhaps most important of all, I know I have a dramatic allergy to chlorine, which can bring on an attack.
I've read that the first five years of the illness are meant to be a marker of how it will progress. I don't know if this is true. I do know that in the five years since my diagnosis, almost without my noticing, my range of movements has become restricted. I can't remember when, but sometime in the past few years I lost my ability to run. I can no longer jump, and many days I walk as though I've had too much to drink at lunchtime. I've considered marketing T-shirts saying, "I'm not pissed, I've got MS," but that would invite pity and assumptions that I will end up in a wheelchair, when in fact I and a lot of people like me spend an awful lot of time working to make sure we don't.
To this end, I recently attended what in my family was referred to as "walking school": a two-week course of "conductive therapy" at the National Institute of Conductive Education in Birmingham. The main institute is the Peto in Budapest. In the late 80s, it opened its doors to foreigners and parents began travelling there from the UK with children who had cerebral palsy. In Hungary the therapists, known as conductors, got them to move to a different tune, quite literally, as the use of rhythm is an important part of the therapy.
Strangely, in my life before MS, I had already visited the institute: in my job as a radio journalist, I had followed the Princess of Wales there on a royal visit. I remember being impressed by the patience of the conductors, who can spot from the slightest movement what is wrong, and by the desire of the parents to do the best for their offspring, but most of all I was impressed by the determination of the children to control their disobedient limbs.
A little over a decade later I was at the British version - opened in 1995 - trying to control my own limbs. I had always assumed conductive education was just for children, but it works for all people with movement disabilities. I had decided to give it a go because, at the age of 38, I had had enough of being on the sidelines. I wanted to be able to run and dance with my little girl, I wanted to be able to go after her if she rushed off, I wanted to be able to run after a ball and play hide and seek in the furthest reaches of the garden.
It was a remarkable two weeks. The course was held in a lovely Victorian building close to Edgbaston cricket ground. It was non-residential and cost £399. Each daily session lasted two hours, which doesn't sound much, but it was plenty. There were four of us, all women, all with MS.
A lot of the therapy was done lying down on special benches with feet pointing to the ceiling so that if someone lifted the bench you would be standing upright. Straight away the conductors spotted some fundamental mistakes I was making. I had assumed the MS was affecting my legs, but after just one hour they told me the MS was actually affecting my trunk and my legs were shaking because of my inability to find my centre of gravity.
It seems that by walking so upright I was putting my balance out because my hips weren't tilted forward. If I tilted my hips like a gymnast, my balance improved. Next it appeared I wasn't pressing down on the whole of my foot, which led to more balance problems - and I had also forgotten that, when climbing stairs, you should use your arms. When I began using my arms again, my balance was even better. It was a revelation.
The conductors at the Peto are lovely, but they can't make you well again. I'm still not running but I did there and I know that, in the right conditions, I could again. My dancing is better, too. Going downstairs still isn't brilliant but I know what I have to do to make it better and that's a confidence boost in itself. No longer do I wake up and think: if I stumble or lose my balance, I just have to put up with it because I have MS. Instead I think of what I've learned, of what I'm doing wrong and what I need to do to make things better.
I may wake up tomorrow unable to see properly, unable to walk or hold a glass, but I'm used to living with that. What I do feel, since the course, is more confident. And my walking? I've been studying how the "normal" population walks, and mine isn't really any different. I may still have to think about it more than most - remembering to stick my hips out and press down on my whole foot - but there can be few people who appreciate a walk as much as me.
Nicky Broyd reads news on BBC Radio Five Live.
Copyright © 2004, Guardian Newspapers Limited