Step Into MyShoes
Walking is one of the things that most of us can happily take for granted and it is only once it is restricted that we realise how fundamental it is to so many things that allow us to carry out our work, enjoy our lives or simply get by. The ability to walk freely, with confidence and style is something worth celebrating.
Sadly for many of those with Multiple Sclerosis, walking cannot simply be taken for granted. Although it is by no means the only activity to be affected by the disease, it is one that affects a disproportionate number of those with MS. And one which when affected causes great frustrations and arouses strong emotions.
Those with MS may be totally unable to walk, walk awkwardly, be prone to stumbling and falling over, lose feeling in their lower limbs, suffer from fleeting, chronic or strange and uncomfortable sensations, cramps or pains in the lower limbs. Or they can simply be too fatigued to walk even short distances.
To make matters worse, just because someone with MS has any one of these symptoms does not mean they will not suffer the others. And even those who suffer none of these symptoms at the moment may well develop them at some other time. Like many diseases MS is full of depressing symbols. Shoes, on the other hand, are a very positive symbol.
Shoes symbolise walking and personal mobility and this is one reason why they have been adopted by the MyShoes Campaign to Fight MS. But it is not the only reason. Shoes are also very symbolic in many other ways.
Shoes symbolise variety and choice. There are as many different shoes out there as symptoms of MS. Shoes symbolise freedom. Each shoe is a little liberator. Shoes symbolise control over one’s own destiny. With the right pair of shoes we can make our own way.
Shoes symbolise the combination of practicality and elegance – they are beautiful yet functional. Shoes symbolise desire. Shoes are aspirational. Our shoes say something about who we are or, perhaps more importantly, about who we want to be. Shoes symbolise hope. It is no coincidence that shoes – or to be precise crystal slippers – play such an important role in the Cinderella story.
MS is a neurological disorder affecting some 85000 people in the UK alone and over five million worldwide. The main demographic group in whom MS is first diagnosed are females in their twenties and thirties, coincidently also the group with the greatest interest in shoes and fashion. MS is the most common disabling neurological disorder affecting young adults.
In MS, damage occurs to the myelin sheath, the fatty layer surrounding our nerves which protects them much in the same way as the insulating material surrounding an electrical wire protects it. This damage, which can vary greatly between individuals, alters the messages conducted between the brain and various parts of the body. These alterations give rise to the symptoms experienced by those with MS.
Just as the degree of damage to the nerves varies greatly between individuals, so too do the symptoms experienced and the courses taken by the disease. As well as the symptoms affecting walking MS can also cause weakness, tremor, numbness, tingling and spasticity in all limbs, dizziness and vertigo, speech and vision disturbances, cognitive, bowel, bladder and sexual dysfunctions, ataxia and depression.
The course of MS is often broadly categorised into four groups: benign, relapsing/remitting, secondary progressive and primary progressive. In the first group – benign – initial symptoms can significantly improve or disappear completely. In the second group – relapsing/remitting – symptoms may come and go with attacks or relapses occurring on average once or twice a year. This is the most common form of MS.
Some of the relapsing/remitting group will go on after 20 years or so to become secondary progressive, with the frequency and severity of their relapses decreasing but the overall level of disability increasing as the recovery after relapses becomes less complete. About 10% of those with MS experience the most severe form – primary progressive – with which symptoms become progressively worse from the outset with no remission.
The goal of the MyShoes Campaign to Fight MS is to raise both funds to help those living with MS and to increase awareness of the disease.
Marla Madison, the founder and initiator of the MyShoes Campaign to Fight Multiple Sclerosis, was diagnosed with the disease seven years ago. Since then she says she has seen great progress made in the way those affected by the disease are treated. But she says, there is still a lot that needs to be done.
“I was lucky enough to be one of the first of those diagnosed with MS not to have a painful and dangerous spinal tap to be diagnosed. The MRI scanner has changed all that allowing doctors to actually see the damage to the brain and nervous system,”
At the time of her diagnosis one of the hardest things was coming to terms with the uncertainty that comes with being diagnosed with the disease. She and her husband sold their publishing business and moved from a house in the country to a specially designed wheelchair friendly apartment in the city, which even incorporated a lift in anticipation of Marla becoming less mobile.
With hindsight, these measures proved extreme. Marla has only had to use a wheelchair on a very few occasions, usually in particularly hot and humid conditions. “The trouble with MS is that you simply do not know how bad it will get or exactly what symptoms to expect. Everyone with MS has a different experience,” says Marla.
A major step forward in dealing with the uncertainty of MS, has been the introduction of specialist MS nurses. The idea of MS nurses is to provide those with MS not just with a medical expert but also someone who has had a wide experience of MS who can help them with practical advice on how best to deal with it.
There are currently some 150 MS nurses in the United Kingdom with arrangements being put in place to create another 150, so that everyone with MS who wants to should have access to his or her own specialist nurse.
On the treatment front, progress has been slower. There is still no cure for MS and the drugs that are available often have very undesirable side effects that can make those with MS reluctant to use them. The standard treatment for someone affected by an acute exacerbation is still an intense programme of the intravenous administration of steroids. And the efficacy of interferon drugs much publicised in recent years is still under evaluation.
Money raised by the MyShoes Campaign to Fight MS will go to the two major charities dedicated to helping those with MS in the United Kingdom. The MS Society, founded in 1953, funds research, runs respite care centers, provides grants, education and training and provides publications on MS. It also runs a specialist freephone helpline. The MS Trust, founded in 1993, offers education programmes for MS health professionals, the support of MS nurses and a research programme.
Although only diagnosed with MS after many years of having to deal with the symptoms, Marla was able to have a very successful career. However, like many with MS she found working for others difficult and ended up running her own businesses.
“There are not many bosses out there who would put up with the on again off again nature of my MS,” says Marla. “But if you are your own boss and can find a suitable kind of business you can make it work for yourself.”
Some of the businesses proved too hard to make fit around her MS. A Mexican take-away restaurant, for example, with its late nights and relentless pace had to be given up even before her diagnosis. Others, however, proved easier to accommodate. When she had to travel on behalf of the publishing company, for instance, she would make sure she was well rested before taking the trip and that she would have some spare time to recuperate on her return, if necessary.
This was all before her diagnosis. “In a way it was a good thing that I didn’t know I had MS then,” she says. “ If I did I probably would not have dared do the things that I have done.”
As a result of her experience Marla feels strongly that people with MS should not unnecessarily limit themselves, or allow themselves to be limited by others. At the same time, the invisibility of many MS symptoms can make it difficult for colleagues, bosses or clients to understand and accommodate those with MS.
The best solution, as Marla sees it, is to get more information about MS out into the public domain. With the MyShoes Campaign to Fight MS, Marla wants to apply her experience gained both as an entrepreneur and a person affected with MS to raising public awareness of, as well as funds for, MS.
“If shoe designers, manufacturers and retailers just nominated one pair of shoes from their Spring/Summer collections to be their MyShoes, we could raise enough money to provide more people and their families with a specialist nurse for another year,” says Marla.
Don’t walk on by. The exhilaration of being able to walk healthily and unimpeded and the sheer sensual pleasure that can be derived from a stylish pair of shoes are both well worth celebrating. The MyShoes Campaign to Fight MS provides a good platform for that celebration.
If you feel you can do something to help the MyShoes Campaign to Fight MS you can contact Marla on 077 93 96 95 75 or by email at marla@myshoes.org.uk.
For more information about MS see www.mssociety.org.uk or www.mstrust.org.uk.
