Motor Neurone Disease (MND)

Sylvia - Interview 25

Female
Age at interview: 66
Age at diagnosis: 65

Brief outline: Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.

Background: Sylvia is a part-time book-keeper, married to an architect, with 6 adult children (including 4 step-children). Ethnic background/nationality: White British.

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Sylvia noticed just over a year ago that she was beginning to walk strangely. A friend suggested she try an osteopath, who immediately referred her to her doctor, thinking she might have had a stroke. She was also starting to notice cramps and fasciculation (muscles twitching). The GP sent her to a neurologist. She had a week of tests in hospital and MND was quickly diagnosed, within a month of first seeing her GP. She was referred on to an MND specialist at another hospital, where she was seen by all the different members of the team.

She had previously been on the internet looking for information about her condition, but after the diagnosis she felt a bit overwhelmed by the amount of information and by how gloomy and negative it seemed. Sometimes it helps when professionals are able to give people a bit of hope and reassurance about the future, even though it is important that they tell you the facts honestly.

A few months after the diagnosis, Sylvia started to feel very breathless. She thought at first she was having heart problems like her mother, but her specialist explained it was the MND. She spent a week in hospital learning how to use non-invasive ventilation (which supports breathing by providing extra air through a face mask). This has made a real difference to her life, and made her feel much fitter. She uses it at night, and has a sleep with the mask on every afternoon so she can keep going through the evening. She feels very lucky that this treatment was available, as otherwise she might not have survived. Generally she thinks the care provided has been wonderful.

At home, Sylvia can get around with a trolley which supports her and enables her to carry things around the house. Sometimes she uses an electric wheelchair at home, and also has a scooter to go into town and round the shops. She values the independence the scooter gives her. Her family and friends have been very supportive, and she continues to enjoy a busy life. She has been to MND Association events, and is looking forward to some events being arranged more locally so it is easier to get to them. Her husband is still working, so he cannot always take her to social events during the week, but she likes to meet other people with MND and learn from them. 

Her husband comes home every lunch-time, but she can manage fine on her own at home while he is at work. He is keen to be the main person to help her with any personal care such as hair washing and showering, and she feels this has brought them closer together. They are going to start having help one morning a week soon, just so he knows he has one morning when he can fix earlier apointments if necessary.

She has thought about Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' and has decided not to make one. She would not want to be resuscitated, but she would want everything done to make her comfortable. She is about to be referred to her local hospice, where massage and aromatherapy can be arranged on day visits.

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