Motor Neurone Disease (MND)

Sue - Interview 31

Female
Age at interview: 63
Age at diagnosis: 62

Brief outline: Sue was diagnosed with bulbar onset motor neurone disease less than a year ago (2006). She is now unable to speak and uses a laptop with voice software. Her arms and legs are still relatively strong.

Background: Sue is a retired business administrator, married with 4 children aged 37, 33 and twins aged 22. Ethnic background/nationality' White British.

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(Sue was interviewed at first in writing via e-mail, and then using her computer to speak the text on video).

Sue had experienced muscle aches in her neck and arms for many years, which she put down to helping with heavy work in her husband's garden design business. Her sports therapist recommended some fit-ball classes to help, but she actually found it very hard work. On one occasion, early in 2005, she found her neck and jaw felt locked after the class, and her speech was slow and slurred. Looking back, she wonders if there is any connection with a severe throat reaction she experienced the previous year during crop-spraying opposite her house. She would like to see more research into causes of MND and possible links with agricultural chemicals.

Within a month, her speech was becoming so slurred that people began to joke about whether she had been drinking. Her GP immediately thought it was a neurological problem, perhaps a stroke, and referred her to a neurologist. It was a 3-month wait for an appointment. Sue had lots of tests, but it took a year of testing and excluding other conditions before a second neurologist in London diagnosed sudden bulbar onset MND. She and her husband were shocked when the consultant told her she had a life expectancy of 2-3 years, and said her local hospice would be contacted. Sue was horrified to hear that she might need hospice care, because to her it meant a place to die. Now she really appreciates the support from her hospice in all kinds of areas, including help with obtaining benefits, providing services such as aromatherapy and massage, and offering emotional support.

Sue was advised to have a RIG (radiologically inserted gastrostomy) when her swallowing became weaker. She had it done before a planned trip to New Zealand. In the event she found it very painful and her recovery was quite slow, so the trip to New Zealand was cancelled. She felt the ward staff were not very well informed about her condition or how to communicate with her, and it took a while for staff to realise how much pain she was in. Now the RIG has settled, and Sue uses it to take thin liquids and ground-up tablets. She can still eat many foods and thick liquids by mouth, although eating out is difficult because she gets quite messy and worries about choking. She also has some problems with excess saliva, especially later in the day and when tired.

Since the diagnosis less than a year ago (2006) Sue has completely lost her speech, and communicates using a laptop with voice software, which she finds much more flexible than a Lightwriter. Although she misses being able to laugh and talk, she can still enjoy conversations with her family, friends and neighbours using the English female voice on the software, known as 'Audrey'. So far her arms have not deteriorated much and she is still able to type very quickly, and her legs are still quite strong. She is still independent and able to do most daily activities apart from vacuuming and gardening. She can still drive, but chooses not to, and prefers not to shop alone. She is worried about what the future holds, for both herself and her husband who is now her main carer. One piece of advice to others with MND is to learn to type, in case this becomes an important means of communication. For her it has been crucial.

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