It's not a wonder cure, but one woman has found a way to live with multiple sclerosis, as she explains to Lorna MacLaren
November 28, 2002
The Glasgow Herald
THE terminology is eerily reminiscent of the torture chamber. The method involves dedication. But the pay-off may, just may, be more than worth the effort.
Multiple sclerosis sufferer Valerie Johnston has pioneered an exercise regime, based on Pilates, which has managed to keep her symptoms at bay. One of 85,000 people in the UK suffering from MS, Johnston has found the slow, controlled stretches have strengthened her body. To watch the qualified Pilates instructor languidly stretch and bend on gym equipment resembling a medieval torture device, it becomes increasingly difficult to believe she has MS. However, she warns: "There is no miracle cure for multiple sclerosis and I would never want to raise people's hopes. It won't be suitable for everyone, but
I do think that this kind of exercise is a good way to keep fit and build confidence."
Dr Colin O'Leary, consultant neurologist and lead clinician for the MS service at Glasgow's Southern General Hospital, adds his rider. "One of the major problems for those with MS is deep fatigue as they only have a set amount of energy each day, but physiotherapy and gentle exercise such as Pilates is an important way of keeping tiredness under control. However, make sure the instructor has an understanding of MS and the individual's needs."
Since Johnston began to talk about how Pilates has helped her, the word quickly spread to other sufferers. Five people from the MS therapy clinic in Glasgow came to her gym in one week to join her classes on the mat and on the Reformer, a bed-like platform using springs and pulleys. Johnston, 43, says: "My one-to -one sessions with MS clients are popular, partly because individuals feel they can talk to me honestly about their emotions and I'll understand. Even I have found it difficult to talk about my real fears and worries with my fiance. There is an instinct to protect loved ones from any darker thoughts you may have."
Pilates, favoured by stars such as Madonna and Halle Berry, was invented by a German, Joseph Pilates, in the 1920s. Flowing movements strengthen the deep, core muscles of the body and aim to restore the natural curves of the spine through controlled stretches.
As those with MS should never get hot or tired during exercise,Val has found Pilates is an effective way to strengthen the body.
The instructor, who owns the Aspire gym in Glasgow's West End, has recently won a UK health industry award for outstanding achievement in building up her successful business, which was bought in the week in 1999 when she was first diagnosed.
She was told that major changes would have to be made to help her cope with the unpredictable condition. "People told me I'd be mad to run a gym it after finding out I was ill. Admittedly, the timing wasn't great but I needed to go for it. Yes, I did think of me ending up in a wheelchair one day, but I couldn't let myself dwell upon it." She took up Pilates to give her a focus and steer her away from developing a defeatist attitude.
With a background in fitness and martial arts - she is a former Scottish judo champion - Johnston was always used to pushing her body to the limit. It was during a run on a gym treadmill that she first noticed that something was wrong. Her vision temporarily became blurred and she couldn't see colours. After mentioning this to her GP, she was sent to hospital for tests.
With a science background - Johnston has a BSc in biology from Stirling University - she recalls appreciating being told in honest terms what was wrong with her. "I was stunned to find out I had something serious. The only person I knew with MS used a wheelchair so it was important I found out more. One good book that helped me at the time was by an author called Cynthia Benz. She approached MS the way I like: in a down-to-earth manner with a sense of humour. Some of the other literature just talked about the worst-case scenarios you can expect: paralysis, loss of bladder control, which is very frightening if you've just been diagnosed."
Johnston admits she sometimes has deep fears. "Of course if I'm tired or my co -ordination is bad I can get quite depressed and I know I'm very lucky to be so healthy just now." She smiles. "I bought my first walking stick two months ago and went out for a stroll when no-one was about. I felt awkward but I may need it one day and decided to get some practice in first."
She lives with her fiance, Ian, in Clydebank and refuses to make MS the centre of her life, yet she admits that the condition, a degradation of the myelin sheath surrounding the nerves, has affected her physically. "I can take a Pilates class and feel fine, but couldn't face walking around the block later that day.''
However, her commitment to the gentle but powerful exercise regime has played a part in keeping at bay some of the more debilitating symptoms of MS, such as severe muscle weakness and loss of balance.
She plans to sell her gym and open a business offering Pilates holidays and weekends. "I crave a new challenge, but I also need to slow my pace and work hours that suit me. In 12 years, when our mortgage is paid off, Ian and I are going to go sailing round the world. I know it seems ridiculous for me to plan so far ahead, but why not? None of us can know what the future holds."
l Multiple sclerosis is the most common cause of neurological disability in young adults. The west of Scotland has close to the highest prevalence in the world with 180 people affected in every 100,000.
l There are 12,000-14,000 MS sufferers in Scotland. Twice as many women as men have the condition.
l Scots researcher Peter Behan says the widely-believed view of MS - that it is an auto-immune disease - is wrong and that genetic and environmental factors are key.
l Treatments include steroids. Modifying drugs used to slow the worsening of the illness include interferon and glatiramer acetate.
l The most common type of MS is relapsing-remitting MS where attacks
are periodic with long remission periods. There is also primary-progressive
MS which is a slow, evolving illness.
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