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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.

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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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One doctor told her husband it might not be MND, so they went home and celebrated with champagne....

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And he had many tests and they sent him home and said they would get in touch with us again. And then we went back to our GP and he said it didn't look good. He thought it could be motor neurone.

Your GP told you that?

Yeah, he was the first to tell us. Ok? 

Were you together at that stage?

Yes we were together. He took it exceptionally well. I went to pieces. I went absolutely to pieces.

What did you know about the disease at the time?

All I knew about it that, like this lady who was on TV months before that who wanted to have the right to, you know, to die and things like that. So it was all very negative thoughts in my mind.

Very hard for you.

Yes it was. And.

Did you have any support at that time?

No. No. We just supported each other really. Well he, my husband supported me because he was stronger than I was at that particular time. And we went to the hospital then for some more tests and we went back for the results and this doctor, one of the doctors said well it's not definite, motor neurone disease, which lifted our spirits up no end. She said the tests haven't proved conclusive. So we came home. We had champagne and you know we were so happy. Went back again. She said but I would like him to see someone else. And we did see someone else and we did see someone else very quickly and he went through all the routines with [my husband] and he said I'm sorry but it is motor neurone you've got. Which sent us all, you know, sent me down again into the depths if you like.

 
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Her husband thought the aching in his legs was because he wasn't used to doing physical work. She...

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Jack retired about three years ago. And I should think about six months into the retirement he started having pains above his knees and he was very uncomfortable. He did go out for one or two days with my son [helping to fit bathrooms] and it was physical labour and my husband put it all down to the fact of physical labour. But the walking then started to get very unsteady. He then put this down to the fact of the hernia. He needed this hernia operation, he said. And he was in a lot of pain with it so he started to walk with a stick. 

We went to Ireland last April and while we were in Ireland I noticed many things. I noticed that he would forget where we were going. And one day he went right past my mother's house. And he would laugh at anything. It was very strange. Another day we were out and we were going to a garden centre and he had forgotten where the garden centre was, even though we had been there many times before. So this really started getting me worried. And I thought actually he was a brain tumour or he was Alzheimer's. I really thought that. And then there was this weight loss. He'd lost about two stone. So Jack again, being Jack, just kept putting it all down to the fact that he was doing physical work with the weight loss, and that the walking was due to the pain from his hernia.

But as I said, there was something I wasn't quite happy about. So we go to see our doctor, our GP, and the GP was convinced that there was something else wrong with Jack but Jack wouldn't have it. 'Just wait until I have my hernia operation and I will be fine.' He had the hernia operation and he wasn't fine. And the walking got worse and worse. So we go back to our GP, and it was I think a Friday we saw him, and by the Friday afternoon Jack is in the hospital having tests.

 
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Even before diagnosis she noticed her husband had become forgetful and slow. The family described...

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We went to Ireland last April and while we were in Ireland I noticed many things. I noticed that he would forget where we were going. And one day he went right past my mother's house. And he would laugh at anything. It was very strange. Another day we were out and we were going to a garden centre and he had forgotten where the garden centre was, even though we had been there many times before. So this really started getting me worried. And I thought actually it was a brain tumour or it was Alzheimer's. I really thought that. 

He's much, much slower. He's got very slow. And like last year before we knew he had this complaint we always thought he was getting so dithery. That's all I can describe it. And our sons used to say 'Gosh, Mum, Dad's getting so dithery. It's because he's not doing anything and his brain is stagnating' and all the rest of it. 'He ought to be, you know, start doing something.' The voice is like he's got a cold. When I speak to him on the phone it's like an old man. That's how I can describe it. He's like an old man on the phone. He spoke to my brother-in-law. He thought it was his father, because he sounded just like his father.

 
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They want to keep life as normal as possible, and so they chose not to contact a support group.

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Have you been in touch with any association for motor neurone disease?

Mary' I haven't gone down that road yet. No. We want to try keeping as normal as possible as long as possible. So that's what Jack said when he saw the lift. He said, 'Looking at it makes me feel like an invalid, you know, and I want to carry on as long as possible.'

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