A diagnosis of Multiple Sclerosis is not a death sentence but it can present enormous challenges. Peta Newbold reports:
"MS is the best thing that's ever happened to me," is Lyndell Gollings' opening line, and for those who know she has a chronic and sometimes painful disease, that may seem hard to believe. "When most people think of Multiple Sclerosis, the image they see is of people flopping in wheelchairs," she said. "But most of us are part of the workforce and live healthy and fulfilled lives. " It's one of the stereotypes that national MS Awareness week hopes to dispel and Lyndell is living proof of how wrong it can be. She's 50 now and learned she had the disease ten years ago after a particularly nasty attack. It started off as a tingling in her finger and then the pain kicked in. She said, "My spine felt like it was sitting on something the size of a grapefruit." Autoimmune disease It's called an autoimmune disease. 'Auto' means self and Lyndell's own immune response was attacking her body, or more specifically her 'myelin'. That's the covering that surrounds the nerve fibres in the central nervous system that runs from the brain and down the spinal cord. Myelin is a kind of 'insulator' and helps conduct nerve pulses or messages from nerve endings to the brain and back again. As the myelin becomes scarred the messages slow down, distort, or in severe cases are blocked completely. For the 15,000 Australians who have MS, and they are mostly women, it's likely to have first appeared when they were between 20 and 40. The average age of onset is around 30 years. Symptoms
loss of balance and co-ordination
blurred vision
weakness of limbs
fatigue
urgent and frequent need to urinate.
Every case of MS is unique and the progress of the disease is therefore unpredictable. The majority of people who get MS get a relapsing-remitting form of the disease where it comes and goes, and for a period of time they can recover completely. Later on the recovery can be less than complete. For around 20% it is more chronic and progressive and for a smaller percentage it can be very debilitating. The only thing that people with MS do have in common is that for each of them there is no cure. Shock It's no wonder that a diagnosis of MS comes as an enormous shock, but no cure doesn't mean no hope and it's at this point that Australia's unique way of managing the illness swings into action. The MS Society is a charitable organisation that raises most of its own funds. It focuses on providing information, education, counselling and rehabilitation. In tandem with our health system it provides physiotherapy, occupational therapists, psychologists, respite care and support groups for people with MS and their families. "We take a multifaceted approach to MS," said Dr Garry Pearce, Medical Director of MS New South Wales. "That means we not only look at the physical issues but also the emotional, social, vocational, spiritual and sexual, after all MS is something that potentially affects every aspect of life." Lyndell acknowledges that the MS Society was fundamental in encouraging her positive outlook on life. She said, "I have the disease, it doesn't have me". Medication Part of that process of 'taking control' of her MS was that she rejected medication in favour of lifestyle and dietary changes. She suspects her attacks may be triggered by eating dairy products, red meat, sugar, melons and mushrooms and has banned those foods from her diet. No one really knows yet if diet does affect MS but there's no doubt that for most people medication is important. It can help treat some of the symptoms as well as the underlying course of the disease. Interferons There's been a lot of progress in the development of Interferons in recent years. They can be effective at slowing down the progress of the disease and reducing the number of severe episodes.
They are proteins that are produced naturally in the body so they reduce anxiety about taking potentially 'toxic' substances on a regular basis.
One class of interferons, known as the beta interferons are particularly effective for MS.
Considerations for Therapy Research continues to show that it's vital that these immunotherapy agents are started early. According to Dr Pearce "MS can do much silent damage and once it's done it can never be undone. Early treatment can slow the course of the disease in those with the relapsing-remitting form of MS and hopefully to prolong a person's quality of life." Research After decades of research around the world we still know very little about why it affects some people and not others. It's likely to be a combination of factors both genetic and environmental. "We know from twin studies that if one genetically identical twin has MS, the other twin has a risk of between 30 to 40% of having it too and that's compared to an incidence in non-identical twins of around 2 or 3%," said Dr Pearce. "But not all people genetically predisposed to MS get the disease. There is still unknown environmental factors that trigger the disease and it seems more common in colder climates." Lyndell Gollings thinks it's likely that her early upbringing in Canada and Alaska is likely to have influenced her MS. It's also interesting to note there are more MS sufferers in Tasmania per head of population compared with the rest of Australia. There may also be a viral trigger, and glandular fever, chicken pox, measles and herpes simplex have all come under suspicion. But then again, a fourth reason is just as likely to be chance. Getting on with life Lyndell may never know for sure what caused her MS, but she doesn't dwell on it too much. She's grounded very much in today, and has kept her job as an administrator and has 'dabbled' in interior decorating since her diagnosis. Central to her philosophy is laughter, and the support of her partner Patrick, daughter Becky who's 21, plus some 'wonderful' friends. She says she's been given the disease as a kind of 'lesson'."I've learned a lot from my MS. I'm no longer judgemental and critical and I believe that MS is my best friend, it has made me strong." June 3rd to 9th is Multiple Sclerosis Week in Australia
Reprinted with permission from Editforce
