You’ve seen the videos, you know the name of the disease, but how much has your awareness of motor neurone disease really been affected by the Ice Bucket Challenge?
The latter half of August has had our social media sites filled with ‘Ice Bucket Challenges’, in which people around the globe have tipped icy water over their heads in order to raise awareness and funds for the Motor Neurone Disease Association. Celebrities including Bill Gates, Kim Kardashian, and Benedict Cumberbatch, among many others, have created videos, and the nomination process has ensured that the fad has spread as rapidly as the ‘No Make-Up Selfie’ craze to raise money for Cancer Research UK in early 2014.
While the latter activity was based on the idea that in the time it takes to apply make-up in the morning, a female could have checked her breasts and potentially helped to pick up on any pathological changes early, the origin of the icy water is less clear. Despite accusations of ‘self-congratulatory slacktivism’, some say bringing motor neurone disease into the spotlight can only be a good thing. But how much does the general population know about the condition since the explosion of the awareness raising campaign?
Motor neurone disease is a progressive degenerative condition in which the nerves controlling muscle movement (motor nerves) are lost, and so is control over an individual’s limbs and respiratory muscles as a result. Symptoms include severely delayed movements and reactions, difficulty with speaking and swallowing, increased tiredness and pain from working so hard to control movement, and eventually an inability to keep breathing at an appropriate rate.
Motor neuron disease is relatively rare, and affects 1-2 people in 100,000 in European populations, however no substantial evidence has been found and research continues to identify the cause of the disease.
There is no cure or truly effective treatment for motor neurone disease. However, treatment with prescription drugs, physiotherapy and speech therapy are often used to help lessen the symptoms. Eventually, patients with the disease need help with breathing and may need to be tube-fed to avoid malnourishment. Psychiatric and palliative care is also significant in helping the patient to achieve the maximal quality of life, and to prepare for the end of their lives as it is a terminal disease.
It is very easy to be cynical about viral fundraising campaigns, particularly when we see groups of people getting involved without donating money or seeming sincere about the cause. We have all seen the struggling ‘chugger’ on a street corner with a collection bucket doing their best to get the general population involved with their given charitable cause, and probably walked straight past with our money firmly fixed on a bus fare or coffee. However, anything motivates large numbers of people to raise awareness and funds should be encouraged. It will be interesting to see which bizarre activity donators will be committing to film next. So come on everyone, Movember-ice-bucket-tree-planting-selfies all round.
By Sophie Evans