Scotland has more cases of MS than anywhere in the world

Tag : Knitted Pattern

Quigley first talked publicly about her illness in an article inthis newspaper, just over a year ago. Before then, only a smallcircle of people, including her husband, Scotland's current financeminister John Swinney, knew of it.
The piece was her way of breaking it to many others. Beforepublication, she worried that readers might think she was saying:"Look at me!" She also doubted that it would be of interest or helpto anyone. But the response to her article transformed her view ofthe power of personal journalism. One reader emailed to say thatshe had used the piece to break the news of her own MS diagnosis tosomeone, handing the magazine over and saying: "Read this. I've gotthis." The feedback, she says, was humbling.
Quigley hesitates to say that her condition has deteriorated sincethen. "I don't want to say it's getting worse, but gradually it has" she falters. "I am a bit worse than when I wrote the article. ButI don't like to say that, because I have good days and bad days.""Worse" is not a word that comes easily to her. She is a resolutepositive-thinker.
Quigley's daily life is coloured by small struggles. Unlike most ofus, she has to think about the act of walking. If she doesn't, orif she gets up too quickly, she risks falling over in the first fewsteps. Getting up from her chair now, she demonstrates how sheconsciously brings herself into the process of walking, tucking herpelvis under before moving off. The resulting stride is awkward, asif her hips are lagging behind her perfectly postured torso.Pilates, she says, has helped her cope with the disease,strengthening crucial core muscles.
Mostly however, she finds ways around having to walk too far. BBCcameramen now go out of their way to drop her off at the interviewlocation, rather than forcing her to walk from the parking spot.When she is out with her husband, he will often carefully rearrangethe world around her. "He's very good at making it easy for me,"she says. "He'll say, We'll just sit down here' or Why don't we allsit down here?' rather than asking if I want to sit down." Sherarely goes to the supermarket. Shopping is done by Swinney, orordered online.
If tiredness afflicts her, she shows no sign of it. Though seated,she is constantly in motion, hands animated. In her Sunday Heraldarticle, she wrote that her doctor's main advice had been "to avoidstress and not get too tired or too warm". Yet, stress andtiredness are knitted into her life. "My medical consultant mustdespair of me," she wails. "But look at it this way. It might beextremely stressful for me to not be working at this job. Somepeople think if I have a quiet day spent sitting down, that's muchbetter for me. Not really. If I sit the whole day then I'll standup and my legs won't work."
Quigley is here to discuss a documentary she has made for the BBC,which deals with a question that has troubled her over recentyears. Scotland has the highest MS rate in the world: why? Quigleyhad found herself being repeatedly asked for her views on thisquestion, and as a journalist she found it frustrating that she hadno answer. The documentary travels to Canada and Orkney to look atthe many factors that increase an individuals chances of gettingMS. But for Quigley, this is also a very personal journey.
Having intended her Sunday Herald article to be her sole publicdiscussion of her disease (she didn't want to be a "poster girl"for MS) Quigley initially balked at the idea of the documentary. "Iwas worried about putting so much that is personal into the publicdomain. I'm quite private. And yet, I did think the subject wasimportant."
What she discovered in the course of her journey is that there isno single answer to the question of why the MS rate in Scotland isso high. There appears to be a genetic element. Orkney, forinstance has the highest levels in the world - it has its own MSsociety - and scientists are showing that it is passed down throughfamilies there. It also appears MS may be a disease we haveexported to other countries. In Canada, for instance, MS isparticularly high in areas to which Scots emigrated. What does thismean for Quigley, a Glaswegian? She has no Orcadian roots nor doesshe know of any member of her family who has had the disease. Yetin genetic terms, it may be enough that she is Scottish.
Our lack of sunlight may also be a factor. MS has been associatedwith low levels of Vitamin D, and when Quigley was tested, herlevels were found to be low. There may also be a link between achildhood virus and the disease. Using herself as a case study,Quigley asks: "Is it because I'm Scottish? Maybe. But you've got tohave something else. Is it because I had glandular fever when I wasyoung? But many Scots have viruses. Is it because of low sunlight?Maybe. But again there's got to be something else."
While the programme does not provide any ultimate answers,suggesting rather that MS is the result of a complex series ofevents and conditions, it does provide hope. During filming,Quigley met Professor Charles Ffrench Constant, the head of theEdinburgh University Centre for Translational Research, who thinksa cure will be possible in the not too distant future. Drugs, hebelieves, could be developed to reactivate the brain's own stemcells into producing myelin and repairing the nerve system itself.To Quigley this sounded "like science fiction". But, she pointsout: "He talked in such confident terms. And I've interviewed quitea few scientists. They never leap to the golden conclusion."
Quigley is not prone to feeling sorry for herself. "Why me?" is nota question she has ever asked, at least not in a "woe is me" kindof way. The question posed by her programme addresses is not "whyme?" but "why here?". Yet as she talks about our "beautifulcountry" - the one that produced this disease and sent it round theworld - I can't help thinking: what about this beautiful youngwoman and the fact that she has that disease? Might "why here?"actually be a distancing question: a way of approaching the "whyme?" issue, without facing it straight on.
"A-ha. I suppose," she says thoughtfully, when I put this to her."Distancing? A-ha." Quigley takes a disciplined approach to herillness. Every evening, she injects the drug, Copaxone. Does ithave any effect? "I don't know," she shrugs. "At this stage I'm notaware of it making a difference, but it's early days." She swimstwice a week, in the mornings, before work. She does physiotherapyexercises every night. She is teetotal. "I can walk down the streetand fall over without alcohol," she says. "Why pay to get somethingyou've got already?"
She recalls, some time after her diagnosis, reading a book calledWhen The Road Turns by Margot Russell. As she paraphrases itsopening lines, tears well in her eyes: "Where were you when theroad you were on in your life turned? Were you just starting out inlife? Had you already had a family?" It's not difficult to see whythis moves her. When Quigley was diagnosed she was 28 years old,with a bright future as a political journalist ahead. That word,"turned", matters to her. She was determined that this was not theend of any road for her.
In fact, Quigley has veered very little off her original road.Asked if her career would have been very different had she notdeveloped the disease, she says: "No." Rather, what has had thebiggest impact on the course of her career, is not the disease butlove. When she married Swinney, then leader of the SNP, she gave uppolitical reporting, her big journalistic love, to avoid anyconflict of interest. Working now as a general reporter she sees nolimits to what she can do. "I don't run round the block but then Iwasn't very good at that anyway."
At 36, Quigley doesn't have children, although Swinney has two froma previous marriage. Has MS had any impact on whether she decidesto have children? "I think, given MS is also triggered by thoseother factors, the risks of passing it on genetically are actuallyvery slight. I don't think that would be a factor in a decisionabout having a family."
Might the question of her own health be a factor? "Some women," shepoints out, "who have MS, suddenly find when they get pregnant alltheir symptoms disappear. You hear of MS sufferers who have lots ofchildren because they feel so well."
Often, when Quigley is explaining her condition to other people,she will emphasise it is not going to kill her. "You spend a lot oftime telling people you're not going to die," she says. However,although no-one dies directly of MS, there are those whosesuffering is immense. Quigley doesn't look in those very darkplaces. She and her husband do not discuss how they would deal withthe illness if she got much worse. "Not at all," she says. "I don'tthink about that. I can't worry about something that might neverhappen. That would make things worse for me."
People often ask her what's going to happen next. "It's difficultfor them to grasp that I don't know. And that I don't mind that. Ijust take it as it comes." She also sees no point in looking atother people's experiences when MS follows a different path inevery person. "I know people at all different stages and it is sodifferent for everybody. So, when I see somebody who is having,say, problems speaking, I don't think these things are going tohappen to me." Her finger plots a graph in the air of her ownpattern of disease, a steady slight downward slope with theoccasional small dip. There are some sufferers, she explains, whohave one attack and then have no further symptoms. Others go intosteep decline.
While filming her documentary, she visited an Orkney MS sufferer,who, though just a year older than Quigley, was confined to awheelchair. After the interview the woman asked her how she hadfelt about coming to visit her. Quigley, in characteristicjournalistic fashion, turned the question on her: how did she feel?"Guilty," the woman said.
"Why?" Quigley asked.
"Because seeing me like this, you might think this is what's goingto happen to you. And it might never happen."
"Well, I feel guilty too," Quigley countered. "I felt guilty comingto see you because I walked in here."
Quigley sees her disease as a journey, a "mystery tour". What isthe next stop? How does she see her future? Very much, it seems, asthe present. She hopes her current graph of mild deterioration willremain the pattern, or that the disease might level out, but shedoes not entertain thoughts about getting better. She is cautiousabout entertaining the hope that Ffrench-Constant's hoped-for curemight help her. "I'm not holding out for it. I don't think it willbe for me and I'm not letting that thought in. But maybe there willbe a cure for other people."
Then, once again, she switches from the subject of "me" to herfavoured "here". "We've got the highest rate or MS in Scotland,"she says, brightly. "Maybe we'll find the cure. There's a man notvery far from here who thinks maybe we will. That's good. It'sturning a negative into a positive."