Cordelia - Interview 13
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...
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...
Footnote' The National Institute for Health and Clinical Excellence (NICE) guidance on riluzole is at' www.nice.org.uk/page.aspx?o=14490
She has lost stamina and now gets very tired. After a lot of activity she tends to get muscle pain.
At 76, she can look back at a wonderful life, and she feels lucky she has no pain. She thinks...
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...
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.