One of my readers, for whose opinion I have the highest respect, suggested that this blog would be more useful to patients and carers if I were to be more honest about my feelings. I’m perfectly happy to do so but, of course, do not want to fill these pages with doom and gloom. That’s why I usually concentrate on the jollier aspects of life.
It would be totally dishonest if I did not admit that I am anxious much of the time about my condition, most particularly, I suppose, in bed at night if the fasciculations are very active. One lies there knowing one is going downhill, but how fast? Beyond that I do not believe that I am seriously depressed.
The worst aspect of this condition is the overall sense of weakness and increasing frustration in being unable to do things with one’s hands. Yesterday, for example, I almost failed to get out of the train because I could not exert enough pressure on the door â€˜openâ€™ button, which I eventually managed to do with my elbow.
The other great frustration comes in handling paper. Sorting out files and so on and the absolute impossibility to grip single pages. I can still manage my laptop with my hands using the middle finger of my left hand to operate the mouse. In addition, I have a lever Point It! mouse, kindly provided by AbilityNet, which I also use. When the hands go I shall have to revert to a foot operated mouse which will also be provided by AbilityNet. Having said I manage with my laptop, again I find the process extremely frustrating. Everything is so much slower now.
Beyond all of that I live day to day and do not give too much thought as to how I might end up. If I did well on this I’m sure I could become extremely depressed. It is for that reason that I include, in this blog, urbane details of unaccompanied visits to London, Lordâ€™s, the golf club and the like. Not to impress the reader about how sociable I am but just to demonstrate my physical ability for activity.
I hope that this satisfies the reader who wanted to learn more about my emotional state of mind.