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