Cordelia – MND

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

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Even though taking riluzole might have extended her life with motor neurone disease, she…

Age at interview 59

Gender Female

Age at diagnosis 56

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 is at’ www.nice.org.uk

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A woman with motor neurone disease explains how she read NICE guidance on riluzole and discussed…

Age at interview 59

Gender Female

Age at diagnosis 56

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 is at’ www.nice.org.uk

Print Transcript