Motor Neurone Disease – A Personal Tragedy Motor neurone disease is a term for a collection of serious conditions that attack the nerves (motor neurons) in the brain and spinal cord. It is progressive, which means that it gets gradually worse as the connections between nerves and the brain weaken over time. When messages from the brain stop reaching muscles as a result of these lost connections, muscles become stiff, weak and wasted. Currently there are predictions that the UK is on the verge of a ‘neurology timebomb’ (as reported in The Guardian in 2012), with the numbers of people with motor neurone disease set to rise by 27% by 2020. There is no blueprint for motor neurone disease and separate individuals tend to each go through a different set of symptoms. There is no specific way in which the condition develops and not everyone will experience problems across the symptom spectrum: issues with eating, drinking, talking, breathing and walking. Although motor neurone disease is severely limiting, there are many thousands of people across the world who live with it daily. Perhaps one of the most famous sufferers is Stephen Hawking, who has achieved an enormous amount as a theoretical physicist, despite his condition, and has also developed something of a cult status thanks to his profile and personality. He has said of his condition: “I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.” Because motor neurone disease is very individual, the effect that it is likely to have on the sufferer and their family and friends can be very variable. For most people the initial reaction is one of overwhelming shock, followed by a fear of the future and for loved ones, and attempting to understand the role someone with motor neurone disease can play in the lives of those around them. Reactions from friends and family can vary greatly, depending on who the sufferer is and how central they are in that person’s life – some of those who have very close relationships may try to hide their feelings, go into denial, or retreat from the situation altogether. For most people, the only way to cope with the diagnosis is through time, patience, communication and then taking action. There has been considerable criticism of the way that services aimed at those with motor neurone disease are run and many within the healthcare sector are calling for some kind of ‘neurology tsar’ to take the lead on managing services for those affected. In the meantime, whilst there is still no known cure for motor neurone disease, and no entirely accurate way to prevent it, research is crucial for learning more about this collection of conditions, how to manage them effectively, as well as also benefitting others with neurological problems. My personal experience was when my mum first became ill; doctors thought she had had a stroke. 18 months after she was diagnosed with ALS - Motor Neurone disease she passed away. All terminal diseases are horrible to go through; but for my mum and for close family it was terrible to see her frustration and struggle with the illness. Seeing her body shut down, losing the ability to walk, use her arms and then speech. She struggled to communicate to us and was often frustrated, that her body would not do what she wanted. Losing my Mum to Motor Neurone Disease, has given me a passion to support the charity MND Association. Those who know someone with the disease, will understand how cruel this disease is. Little is known about the disease and there is not enough research into the disease. Help support me and my daughter and please donate to our Bungee Jump for MND and Prostate cancer Donate here - goo.gl/iHxyX
Posted on: Wed, 12 Jun 2013 15:51:13 +0000
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