Lesley's Experience with Motor Neurone Disease

[[{"type":"media","view_mode":"media_large","fid":"3272","attributes":{"class":"media-image aligncenter size-full wp-image-11764","typeof":"foaf:Image","style":"","width":"550","height":"269","title":"Jubilee Court Quantum Care","alt":"Lesley holding money she raised at a Macmillan coffee morning"}}]]It’s been just over a year now since the film ‘The Theory of Everything’ was released. Over that year, the film has received BAFTA, Golden Globe and Oscar nominations for its moving portrayal of Stephen Hawking’s battle with Motor Neuron Disease (MND). The film not only greatly boosted awareness of the disease, but has helped to raise incredible amounts of money for charities relating to it. However, it’s often not fully understood exactly what it’s like to live with MND. Lesley, a resident at Jubilee Court in Stevenage, was diagnosed with MND in July 2013 at 63 years old, a time when she was living a very full life and working as a buyer for an aircraft company. About 6 months prior to her diagnosis, Lesley experienced problems walking and was given a calliper support for her leg. After many further tests, she was given the final diagnosis of MND. Since 2013, her mobility and her ability to carry out many everyday tasks have declined rapidly. Lesley first came to Jubilee Court on the Intermediate Unit for rehabilitation after having a fall in her home; a frequent occurrence due to the disease. After a consultation with her physiotherapist, it was clear that she could no longer live independently in her own home. Still being young, this was very upsetting news for Lesley. However, after 6 weeks on the Intermediate Unit, Lesley requested a permanent stay at Jubilee Court. She had come to love living there and knew she would be well cared for and supported in retaining as much independence as possible. Just over 18 months from her diagnosis, Lesley is noticing a real deterioration in her abilities. She said ‘I can cope with losing the ability to walk, but not being able to use my hands properly is very frightening’. Despite the great difficulties she faces, Lesley remains determined to experience as much of life as possible. She has an electric wheelchair which, on good days, enables her to get around and has become the ‘Shopkeeper’ at Jubilee Court. She’s very popular with all the residents and their families, as well as all the staff at the home. Her life holds a great deal of uncertainty; she may lose the ability to eat and drink or contract an illness that could easily take her life. She said ‘I have days where I am very depressed, but as soon as this is noticed, there are caring staff that I can talk to and make me feel better’. Lesley is very pleased with the fantastic response to Stephen Hawking’s life story and hopes more people will now understand MND and that while the body may become less active, the mind is as bright as ever.