Motor Neurone Disease (MND)

Mary - Interview 04

Age at interview: 59

Brief outline: Mary is the wife of man diagnosed with MND a year before interview (2003). (Couple also interviewed together - see Jack's story MND03).

Background: Mary is a pharmacy assistant, married with 3 adult children. Ethnic background/nationality' White British.

Audio & video

Mary first started noticing there might be something wrong about two and a half years ago, six months after her husband Jack had retired. He started getting pains in his knees and legs, but put it down to the fact that he was doing a lot of physical work helping his son's home improvement business, and that he needed a hernia repair operation. He started using a stick to walk. 

About a year ago she noticed other symptoms - her husband became forgetful, and she worried he might have Alzheimer's or a brain tumour. He also started to lose weight. Eventually they went to the GP, and on the same day he was admitted to hospital for tests. He was sent home before the diagnosis was confirmed, but their GP mentioned to them that it might be MND. Her husband took the news well, but she was devastated. All she knew of the condition was very negative.

When they went back to the hospital, one doctor told them the tests were not conclusive, and for a while they felt hopeful, and even opened some champagne. But the first doctor wanted them to see another specialist, who confirmed MND. She started to read up about it and found out about the drug riluzole. It was not offered to them initially, so they had to ask for it to be prescribed. They had hoped it would improve his walking, but it is hard to see what difference it has made, and his walking has gradually got worse. She has recently noticed his speech getting worse and he has become incontinent.

So far Mary has been supporting him at home on her own, but has reduced her hours at work.The occupational therapist has helped with equipment, such as grab rails and a chair in the shower, and a bed lift. They tried a hoist but Jack did not like it, so it was returned. Mary has back problems herself, so helping him up if he falls can be difficult. Occasionally she has called a neighbour for help.

It is sad for her that they can no longer do all the things together they used to enjoy, and it is becoming more difficult to go out or have a holiday. At first when he was diagnosed it was devastating and it was always in her thoughts that he had MND. Now she is feeling better about it, but she still watches all the time for deterioration in his symptoms. She is currently taking antidepressants to help her stay positive, and tries not to look at too much information about the condition and what the future may hold. Some days she can still hardly believe it is happening to them. 


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