Cordelia - Interview 13

Age at interview: 76

Age at diagnosis: 75

Brief Outline:

Cordelia was diagnosed a year ago (2005) with MND after investigations for other conditions including spinal muscular atrophy. She now has considerable muscle weakness.

Background:

Cordelia is a married housewife with 6 adult children. Ethnic background/nationality: White British.

More about me...

Three years ago (in 2003) Cordelia was mountain climbing in Scotland and felt it might be for the last time, though she could not really explain why. A year later she began to find walking more difficult and her foot started to flap. She had two friends who had died of MND and wondered if she had the condition. She went to her physio, who later told her she also suspected MND at the time but did not say anything. The GP referred her to a neurosurgeon, thinking it might be a back problem. The surgeon referred her on to a neurologist for further tests and she was treated with intravenous immunoglobulin, but it made no difference. At one stage Cordelia's GP told her it might be spinal muscular atrophy, so about 9 months ago she went to a conference about that condition. There she met another consultant neurologist she had been to see, who told her she was at the wrong conference. She later went to see him in his clinic and he confirmed the diagnosis of MND. She was glad to be told honestly and to get a definite diagnosis.

Since diagnosis Cordelia has had to change her energetic lifestyle to adjust to the muscle weakness and pain she experiences. She now finds she gets exhausted very quickly if she tries to do too much, and feels the condition is progressing more rapidly. She has decided not to take Rilutek (riluzole) because she does not want to run the risk of nausea as a side-effect. They have had well co-ordinated support from local health and social services, and plenty of aids and equipment. 

Sometimes Cordelia feels very low but most of the time remains very happy and content, and feels she has had a good life. She has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' stating that she wishes to die as quickly and easily as possible. She feels it is important, whatever age you are at diagnosis, to accept what is happening to you and adapt your life.

She went to a conference on spinal muscular atrophy, thinking this was her diagnosis. A...

At that stage my GP said he thought I might have spinal muscular atrophy, SMA, so I then thought, 'Well, perhaps that is it.' And he said, 'It is not as bad as motor neurone.' And so off I went to a conference for SMA, because I thought, 'Well, if I am going to have this, I want to know about it.' So I went off to a conference and there I saw my present neurologist. I had seen another neurologist - yes, I told you that. I saw another neurologist and he said straight away, 'You are at the wrong conference.' And he didn't actually say, 'You have got MND', but he said, 'You are at the wrong conference.' So I wasn't as shattered as I might have been, I suppose, because I think I guessed that.

So then I went to see him and he's absolutely super and he's a specialist in MND, and I went to his again NHS clinic and he saw me and this was - let's see what date that was. This was last year. So they kept on stressing you won't die with SMA. Well, you know, it was all really just to make me feel happier I think. I think they knew that I was fussing.

I am still thinking it is SMA right up until January '06 and going on through January '06, sorry, until I went to see the neurologist. After going to the SMA conference I went to see the neurologist. And I went in July, and he immediately said, 'You have motor neurone disease', which he then proceeded to say, 'I expect that is a shock to you.' And I said, 'Yes, it is a shock to me.' And he gave me a tape of what he said. He then talked to me, talked it through and a brilliant tape of what it meant. And so then I came home and then I started dealing with it.

Now what do I say? It is shattering. I have very bad kind of moments but on the whole I think that it is true to say that 75 or 80% of the time I am extremely happy. I have got my head round it. I have reduced my lifestyle completely down from what a lot I was doing and, you know, although as I say some moments are very, very dark and black because you think you are getting better, getting worse and it is a bit black. That is enough of that.

I don't think it would have made a scrap of difference whether I had known at the beginning or not, and I think possibly psychologically they were all right. They were getting me up to the stage when I would accept the fact that I had this terminal disease. So I wouldn't blame anybody. I prefer the way the last specialist did it. But it could well be that he realised that I had been brought up to accepting this.
 

She decided not to take riluzole in case it made her feel really sick. At her age she is not...

There is a paper by NICE [National Institute for Health and Clinical Excellence] on Rilutek, and there is a lot mentioned in that French paper about Rilutek and they say it is very good in France. But my GP sent me the printout from the NICE and we looked at it all very carefully and I have decided - and my brother agrees with me, he is a retired GP - that one of side effects is nausea. Now I started off very soon after the diagnosis with really nasty nausea and I felt horrid, and I've got rid of it now. I think it was psychosomatic but I am sure that if I started taking it - and also looking at the advantages of Rilutek, it didn't seem to postpone - what it did, it postponed insertion of a breathing aid by two or four months. Well, Carol [interviewer], I am 76. If I am lucky I will live to just over 80 and then I really don't want to postpone things. I have done a living will and I certainly want to die as easily and as quickly as I can and not be a menace to my family.

Footnote' - The National Institute for Health and Clinical Excellence (NICE) guidance on riluzole can be found at this link - https://www.nice.org.uk/guidance/ta20

She has lost stamina and now gets very tired. After a lot of activity she tends to get muscle pain.

The main problems that I would say to anybody who has got MND, I would like to know - but I think everybody is the same - is the appalling fatigue. I have lost, I was a very energetic person, you can see, from climbing mountains and cooking and rushing, and I just lost stamina. I have lost energy and I just feel utterly exhausted, and of course the spin offs from that are that I get very severe muscle pain, because the only way I can get about is with a trolley and I want to go down the garden which is rather rough ground, and so I roar down the garden and back again three times a day, and then I get very bad shoulder pain. So I have got private physio and massage. I am pretty well through the history. And that's it. One just copes with these things. But I am saying that it is the exhaustion which is even worse.
 

At 76, she can look back at a wonderful life, and she feels lucky she has no pain. She thinks...

But it must be awful if you are younger, Carol [researcher]. I mean you have to realise I am 76. I have had a wonderful life. I have done everything I want. I am over three score years and ten and, you know, if I went tomorrow - and the other great thing, which other people ought to know, is really you should be thankful. You should say I am so lucky to have motor neurone disease, because you don't have to have chemotherapy, radiotherapy, lose your hair, feel ill all the time. My friends who have died of cancer, I am just so thankful that I haven't got that. I mean, I have had years of that, loving people who were dying slowly of painful diseases. I am lucky. 

One of the things we also have messages or advice to other people who have got newly a diagnosis of motor neurone disease. Is there anything else in the time that you have had that you could advise'?

I think probably I have said it all, haven't I? Because it does so much depend on how old you are. I have met other people who are young and that is terrible for them. But for me, no. I can only say, well, whatever age you are you have got to get your head round it. You have got to accept it. I would always say don't deny. You know, don't be in denial. It doesn't help. Accept what you have got. I sound frightfully pi, don't I? That is all I can say, really.
 

Her consultant has reassured her about what the end of life will be like. She has some faith, but...

Well, I got the MND thing on dying. They don't send that to you automatically but they sent it when I asked for it. And the specialist was very consoling. Of course I don't suppose really they should, it obviously isn't always easy, but as regards the mechanics of dying he was very consoling. He said, 'You will probably die of pneumonia and it won't be too bad.' But obviously that is the bit you have to get your head about. We have got a very nice local vicar and I do have a faith of some sorts which is not as good as it should be. So I work at it. I think I look at it that I have got maybe five years, maybe less, and I have got to cope with this. Death is something I have got to go through like everybody else and I want to do it properly and I want to get everything sorted for the family and I don't feel - no, I feel frightened of it, but I don't feel afraid of it, strangely enough. No, I do have awful dark moments because you look around and you think, 'I don't believe I am not going to be here in one minute, next minute I am not here. How can I possibly not be here? I am me, you know, and nothing can take me away.' And that is what you have to learn to get your head round.

And that has taken time?

Oh yes. It will take a long time. I don't suppose I'll get there. I shall try. And my children are obviously very upset and it is difficult to talk to them about faith because most of the younger generation don't have any.