Motor Neurone Disease (MND)

Pauline - Interview 30

Age at interview: 54
Age at diagnosis: 52

Brief outline: Pauline was diagnosed with PMA (progressive muscular atrophy) about 2 years ago (2005), after several years of leg weakness. She cannot walk far and uses a wheelchair, but is still able to work full-time.

Background: Pauline is a freelance market research consultant in the pharmaceutical industry, married with 2 children, aged 24 and 22. Ethnic background/nationality: White British.

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Pauline was a keen runner and athlete. She first noticed weakness in her left leg while running about 6 years ago (2001). Over the next 15 months the weakness got steadily worse, but she managed with it and just put it down to her body getting older. Eventually she saw her doctor who referred her to a neurologist. At first she thought she might have MS, then an MRI scan showed a cyst on her spine. She had a major operation on her spine, which took sometime to recover from, but meanwhile her leg was still getting weaker and she started using a stick. In 2005, she happened to bump into her neurologist who was surprised to see the operation had not improved her condition, and asked her to see him again. This time after further tests he diagnosed motor neurone disease. She and her husband were devastated but she immediately knew she wanted to carry on with life as normally as possible. Her consultant recommended she should not seek a second opinion but she disagreed, and was referred to a specialist London centre. Here her diagnosis was revised to PMA (Progressive Muscular Atrophy). She and her husband went out to celebrate that she had a slower progressing form of the condition.

She regrets not having had an earlier diagnosis. She feels if doctors have even a suspicion that it might be MND they should say so and explain that diagnosis can take a long time. Now she attends a specialist clinic she feels well informed and supported, but she is concerned that many health professionals, including some neurologists, do not know enough about the condition.

Pauline's legs have slowly got weaker and she now uses a wheelchair outside the home. She still works full-time, and is still able to drive to meetings. She is about to have the car adapted to hand controls, with financial help from Access to Work. She goes to the gym regularly to maintain upper body strength, but she misses the running and cycling she used to enjoy, and has not yet found anything to replace it. Her philosophy is to be positive - even 'belligerent' - to keep active, and try not to think about it much, but she knows she is fortunate to have slow progression. She does not like attending support groups. Although it can be useful to exchange practical tips with other people with MND, she finds the meetings are often more focused on carers than people with the condition. She would like to see more practical advice on things like good sources of second-hand equipment, or where to buy good shoes that don't slip off. She has Raynaud's syndrome, so her feet get very cold and stiffness in her toes makes some shoes uncomfortable.

Pauline has not made an Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' , but if her quality of life became very poor she would prefer to end her life. Her family find this difficult to talk about, but they know her wishes. She does not want her children to feel responsible for her care. Her husband finds it difficult to adjust to the idea that he will be looking after her rather than the other way round. Pauline herself is frustrated that she can no longer run the household as she used to. She knows she gets impatient, but draws on her sense of humour and determination to keep going.


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