ABSTRACT
The varied catalogue of possible signs and symptoms of MND/ALS which we outlined in Chapter 1 ensures that, whatever the particular course of the disease, life with the condition is a demanding exercise - even from its onset. This is so, not only in ensuring that the complex array of problems stemming from the lessening in muscular control as well as muscular debilitation is technically redressed and assisted as much as possible. In managing, for most people with the disease, it is also a relatively relentless decline in key body systems and everyday performance, which focuses attention at the same time on the past (i.e. what has been lost), the present (what remains), and on the future (what else is there to lose?). Keiran reflects on the workings of his body after the onset of MND/ALS:
I am still active physically and mentally; only my speech and swallowing are affected substantially by MND though the grip of my left hand is going and the right one is showing some signs of deterioration. There are occasional creaks, cramps and tremors all over the place. I do my swallowing and speech exercises but there seems to be a slow but irregular decline since July when the diagnosis was made and since the middle of last year when minor symptoms obviously appeared. I am conscious of these changes though whether this is more or less than normal I do not know. [All this is in the context of the fact] that I have hardly been ill for 50 years and only had one potentially dangerous illness in my
life, a mild attack of diphtheria at the age of 9. Does this make one more or less twitchy about the state of one’s body?
