Motor Neurone Disease (MND)

Penny - Interview 11

Female
Age at interview: 59
Age at diagnosis: 56

Brief outline: Penny was diagnosed three years ago (2003) with ALS, after having arm weakness, pains and coughing fits for three years. The condition has progressed quite slowly so far.

Background: Penny is a retired primary school headteacher, married with 2 adult children. Ethnic background/nationality: White British.

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Penny's first symptoms started appearing 6 years ago (in 2000), when she started to find it difficult to lift things on and off shelves. Her hands started to shake, and she began having coughing and choking fits. She decided to retire early.

Initially her GP diagnosed stress, but her symptoms continued to worsen. After three years she was referred to a neurologist, and had tests as an out-patient. She then received a letter asking her to come for an appointment in a different hospital. She was shocked to see that the letter was signed by the MND co-ordinator, although no-one had yet told her the diagnosis. Having previously decided not to look at information on the internet, that weekend she and her husband looked for information on motor neurone disease, so when she went for the appointment to be told her diagnosis she had already found out quite a lot. Although it was a mistake for the MND co-ordinator to sign the letter, in fact it gave her a chance to come to terms with it.

Penny found the information from the MND Association which the hospital gave her really helpful. At first she did not want to meet people from the MND Association but eventually started going to meetings, and has found it really helpful to meet others with the condition.

She has not felt angry about what is happening to her, but has felt shock, disappointment and frustration at not being able to do things she used to take for granted. Now she feels resigned to it and is determined to get the most out of life while she can, especially travelling. It helps to have a loving and supportive family.

Originally she felt a bit overwhelmed by the amount of attention from district nurses, therapists and social services and asked for fewer visits, but now she feels it has gone to the other extreme. Recently she has got back in touch with social services to get advice about installing a lift, as she is finding stairs difficult. She sometimes feels care is not always as well co-ordinated as it could be.

Penny takes a half dose of riluzole, as she finds a whole dose knocks her out. She uses a mobility scooter, and is still able to drive an automatic car. She has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' stating that she does not want any invasive intervention. For example she resisted having a PEG, which the speech therapist felt she needed as she was losing weight at the time. Her message to professionals is to work with the patient to identify solutions together, rather than just telling patients what they think they need. She would prefer to die at home or in the local hospice, where she already goes for some day visits. 

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