Motor Neurone Disease (MND)

Mike - Interview 23

Male
Age at interview: 54
Age at diagnosis: 52

Brief outline: Mike was diagnosed with bulbar onset MND 2 years ago in 2005. He is now unable to speak, so was interviewed through his wife Gill. He uses a whiteboard and Lightwriter to communicate. He has a PEG (Percutaneous Endoscopic Gastrostomy).

Background: Mike (aged 54) and Gill (aged 49) are a married couple with 3 adult children. Mike retired as a Fire Master. Gill is a management consultant. Ethnic background/nationality' White British.

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(Mike's speech has been affected. He tells his story through his wife, Gill)

Mike was a fire brigade Fire Master. He first noticed something was wrong two and a half years ago in 2004, when he thought his speech was becoming slurred. At first other people didn't notice, but one day when he was visiting a stand at a conference, someone accused him of being drunk. The GP referred him to a neurologist who arranged for him to be seen quickly for a brain scan. At first Mike was tested for multiple sclerosis, a brain tumour or a stroke.When those conditions were excluded, he was told it might be myasthenia gravis or motor neurone disease. When a course of drugs failed to have any effect, myasthenia gravis was also ruled out and MND was confirmed. They immediately told all the family and two of Mike's colleagues who knew he was having tests. Mike and Gill's approach with the family has always been to be completely open and tell them everything as they heard it, but they advised them not to rely on the internet for information, as MND affects individuals in such different ways.

Their specialist team have been fantastic and come regularly to their house. Gill helps co-ordinate care and ensure good communication between the professionals involved. Both Mike's sons are sports fitness coaches and have worked on exercise plans for him with his physio. There have been some problems when dealing with non-specialist staff who do not know enough about motor neurone disease. When Mike had breathing problems one night they were sent to a local cottage hospital where the nurse on duty wanted to prescribe antibiotics, assuming it was an infection. They insisted on seeing a doctor who sent them to a hospital with a neurology department. Even there, they felt staff did not listen or take his needs into account, for example telling Gill she could not come into the consulting room with him to help explain what he was saying.

Mike decided to have a PEG tube (Percutaneous Endoscopic Gastrostomy) about a year ago. They were told it would be a simple procedure, but because Mike had great difficulty swallowing the tube they had to stop and arrange for a general anaesthetic instead. Although it was unpleasant at the time, and he has had various infections, he now relies on it completely for all food, liquid and medication. The feeds are delivered every month, and the company even arranged to deliver some direct to Portugal when they went on holiday. Mike and Gill still go out to restaurants and invite people to dinner, even though Mike can't eat. They feel it is vital to maintain social activities. They remind people to involve Mike in conversation and explain to them that if he becomes emotional it is part of having MND. This emotional lability is something Mike finds hard.

He prefers to use a whiteboard to take part in conversation, but also uses a Lightwriter. He uses the internet and email a lot, to chat and to find out the latest information about MND. Mike and Gill say it has been hard adjusting, but they deal with it by discussing everything together and keeping a full diary. They are determined not to let it rule everything; as Gill says, it's Mike who happens to have motor neurone disease, not motor neurone disease which has Mike.

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