16 October 2012

I’m sorry to report that I have nothing more exciting to record than the fact that I had a visit from Althea, the lady who cuts and files my hand and feet nails. So far as my physical condition manifests itself I can honestly say that my breathing has improved. The tightness in my chest appears to have eased, or gone altogether, and I have had no periods when I’m like a fish out of water, gasping for air. In fact, I have found it hard to justify spending time in the morning and afternoon resting under the respirator. but that is what the consultant at Papworth suggested I did, so I shall go along with him. The only thing I can say in favour of following the consultant advice, is that using the respirator sporadically, does allow me to commerce longer without getting worn out. The best I seem to be able to do, at present, seems to be between half an hour and one hour.

I am now getting to that stage where I would like to know how the team expect me to die. It is all very well saying from ‘respiratory failure’, but I suspect it means that, at some stage, my heart will be too weak to allow my lungs to work even with the help of the respirator. I must remember to ask the Papworth people next time I’m in contact.

I know that the crude statistics show that half of the number of people diagnosed with MND die within 2 ½ years and the other 50% within five years of diagnosis. In my case, there was quite a long time between the disease manifesting itself and having it probably diagnosed. In fact, I notice the weakening in my left arm in September 2007 but it was not formally diagnosed until March of the following year. However, for my purposes. I shall take September 2 007 as my benchmark, this then means that I have already passed the five years and am entering into unknown territory. Although I do get fatigued, particularly in the evening, I cannot honestly say I am so weak that I feel that I might as well be dead, although sometimes I get close to it. The next few weeks will, I believe, give us a fair indication of where I am going.

Alice has been taking my blood pressure for the past three days on Dr West’s personal monitor which you lent to us. The outcome has shown a great diversity. The worst being187/105 and the best this morning 136/71 This latter reading would be the sort you might expect on a healthy young athlete so it will be interesting to see what Dr West makes of them.

Talking of the young man, particularly when it comes to dying, click here to see one of the most amazing aeroplane break-ups for which the pilot was given no warning. In fact, he survived unscathed.