How A Hot Idea Came Out Of A Heatwave
The Summer of 2003 was notoriously hot in many parts of the world. London registered its highest recorded temperature on the 7th of August as thermometers hit 35.4 Celsius in the shade. In Germany railway tracks and Autobahns buckled, in Paris and across France scores of elderly people died from heat-related causes and unusually ferocious wildfires destroyed homes and livelihoods throughout much of southern Europe and North America.
Everyone is challenged by an unexpected heat wave but for those with Multiple Sclerosis, it can prove particularly gruelling. When hot, the body’s nerves do not work as well as they should. That is why, for example, applying heat to an injury can dampen the pain. For an able-body person there is excess capacity built in to the nervous system to cope, but for those affected by MS, who are already likely to be running at the edge of – if not beyond – their capabilities, there is not.
The detrimental effect of heat on MS symptoms is so well known that for many decades subjecting patients to a hot bath and observing their reactions was part of the diagnosis routine. The typical kinds of things that may happen include rapid fatigue even when carrying out simple usually undemanding physical tasks, blurring of vision, numbness and/or pins and needles, greater difficult in walking and a markedly increased likelihood of stumbling.
Towards the end of August of 2003 Marla Madison, a former publisher and public relations consultant, was struggling to complete the 400-meter walk between her flat and the nearest café. It was quite an ordeal – only sheer will power enabled her to drag her feet along the desired route. But once she reached the air-conditioned luxury of the café she soon began to feel better. It was there while reading an article about shoe fashions that she got the idea for what has since become The MyShoes Campaign to Fight MS.
“I couldn’t help thinking that shoes said a lot about the MS experience,” notes Marla. “Shoes are intimately associated with walking and walking is one of the most common things to be disrupted by MS. People first diagnosed with MS tend to be women in their twenties and thirties, the same group who take the most interest in shoes and fashion in general. Shoes also come in a great variety of forms, colours and styles just as MS has many different symptoms. And everybody’s taste in shoes is very personal, just as the MS experience is very different for everyone affected by it.
But most of all, Marla thought, shoes are a positive symbol. “The problem with many campaigns about disabilities is that they can tend to be depressing,” says Marla. “But shoes are really uplifting! In fact, people can get quite passionate about shoes. I know people, for example, who have bought a thoroughly impractical pair of shoes because they fell in love with the shoes’ stunning good looks. Yet at the same time most shoes combine style with a high degree of practicality.”
Within a few weeks of coming up with the idea Marla started discussing it with friends. The MyShoes name itself came up in such a conversation. So did the idea for the slogan – Step Into MyShoes. And many ways of using the MyShoes concept to raise public awareness of MS and attract funds for schemes to combat MS, whether on research for treatments and cures or on other ways of helping those with MS.
Armed with her ideas and a written outline of what she was proposing Marla next went to the MS Society and MS Trust, where she found her thoughts immediately struck a chord. The MS Society agreed to fund her campaign and provide practical help.
Marla was diagnosed with MS in 1996 after falling ill at a trade show. Her initial reaction was common to that of many first told they have MS: shock. That can take quite a while to get over with different people reacting in different ways – some denying their MS with others over-reacting and with everything else in between.
After the shock subsided – which took a few weeks – her mind filled with questions about what to expect, how to cope, how her life would change. She quickly came to realise that learning to deal with her MS would be a lot about learning to deal with uncertainty.
Everybody’s experience of MS is different. Nearly everybody worries at first whether or not they will be confined to a wheelchair or whether their life expectancy will be seriously shortened. But after that the similarities often end.
“Most of my initial symptoms were to do with numbness and tingling, walking problems, fatigue and cognitive disruptions such as not being able to get my words out when I needed them. For others it might be disrupted vision, bladder and sexual dysfunction, spasticity, tremor, vertigo and depression.”
“I was worried at first that I would go rapidly downhill, but time has shown me that my fears were unfounded. I have experienced many more symptoms since my initial diagnosis and have had to give up my career but I feel very lucky when I compare my own experiences to those of many others with MS that I have met.”
Even though Marla’s diagnosis with MS was just seven years ago many things in the way MS is seen and treated have improved. There is still no cure nor a truly effective treatment, but specially trained nurses to help those with MS are providing a very valuable service – particularly in helping the newly diagnosed deal with their uncertainties more effectively.
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 needs one can have access to his or her own specialist nurse.
Apart from the uncertainty another thing that almost everyone diagnosed with MS has to learn to deal with is working out how to handle other people’s reactions. Whether being faced with a checkout assistant at the supermarket who cannot understand why such a normal looking person takes so long to sort out the right money to pay with, an airline attendant who cannot see why it takes so long to stow bags in the overhead locker, or a parking warden who sees a disabled parking badge as a privilege, MS is often invisible to onlookers and many simply do not know how to deal with those with MS.
“It is not really surprising that people don’t know how to react when those with MS often do not know what to expect,” says Marla. “Even family members who spend a lot of time with us can get frustrated and show less than the desirable degree of sympathy and understanding. But MS is very frustrating.”
In Marla’s view these are all reasons why informing the public about MS and its symptoms is very important, and that is why it is one of the MyShoes Campaign to Fight MS’s main roles. As well as seeking assistance from the media, MyShoes also uses point of sales materials at various participating outlets. MyShoes also has a supporting website at www.myshoes.org.uk.
The other role of the MyShoes Campaign to Fight MS is to raise funds. The cure is still eagerly awaited, as are more effective treatments and more MS nurses and other MS specialists. Money raised by the MyShoes Campaign to Fight MS goes to the two major charities dedicated to helping those with MS in the United Kingdom, the MS Society and the MS Trust.
The MS Society, founded in 1953, funds research, runs respite care centres, provides grants, education and training and provides publications on MS. It also runs a specialist free-phone help line. The MS Trust, founded in 1993, offers education programmes for MS health professionals, the support of MS nurses and a research programme.
Companies associated with the design, manufacture and sale of shoes can help in a number of ways. The principal way is to nominate a shoe design from their forthcoming season and make a contribution (£5 suggested) on each pair sold to the MyShoes Campaign to Fight MS. MyShoes provides the donor with leaflets, point of sale material and media support.
Donors benefit in a number of ways. Their backing of the campaign reflects particularly well on them in the eyes of the consumers showing that they do not just want their money. It also offers them a chance to join in with their customers in a celebration of the shoe and everything it represents and symbolises. And of course, it offers donors a chance to contribute in a meaningful way to something they can relate with and which is very worthwhile.
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 the MyShoes Campaign to Fight MS see www.myshoes.org.uk.
For more information about MS see www.mssociety.org.uk or www.mstrust.org.uk
For a short but informative article about how heat affects MS see http://www.mscenter.org/pages/pated_effects.htm.
