5 September 2011
Today was my quarterly assessment at the Respiratory and Sleep Centre at Papworth Hospital. Of course, I only go there for the respiratory side of things, having not been referred there for my general insomnia. As I have done with two or three hours sleep for however long I can remember and then spend the rest of the night listening to Radio four, in the normal way I would probably have been a suitable case for treatment. For around 30 years I used to keep a pad of loose sheets of paper by the side of my bed, and as thoughts came to me during my dosing stage I would make a note in large round letters, writing in the dark, so as not to disturb’ my lovely’. Many of my best ideas have come to me during this period of the night, although I must confess that when I looked through anything up to a dozen loose sheets of paper in the morning some of them were more like a snail’s trail, totally incomprehensible.
Anyway, as I say, I was there to carry out my usual respiratory and expiratory tests and I will receive a letter within a week giving me the precise outcome. Michael Davies (the consultant) who I have seen on the last two or three occasions, seemed quite bullish about the results. I asked ,specifically about the volume of air in my lungs and my Forced Vital Capacity (FVC). I think that Michael said that the deterioration in volume in my lungs which had gone down 1.5 in the previous three months, this time had only gone down by .6. The FVC had dropped from 49% to 46%, again a slower rate of deterioration than before. (When I started going to this clinic two years ago my FVC was 87%) although the FVC does not mean very much to most people apparently it is an indication of one’s overall condition.
I didn’t raise, with Michael, my weakening voice and suggested that I imagine this was as a result of my deteriorating diaphragm
He said I was absolutely right and confirmed that there was no indication of bulbar, when the MND attacks your vocal chords. I was, of course, relieved to hear this as I have always dreaded the day when I end up with one of those Mickey Mouse type voices which is inevitable once the disease attacks your throat
The long and the short of it is that I am going downhill at a slower rate than previously. Whether I have plateaued I will only be able to tell when I have my next assessment. Of course, Papworth only deal with the long side of things and my main assessment will be in a couple of weeks time at Addenbrookes.
During my discussion with Michael I did again raise the business of the diaphragmatic pacer as the good Dr Michael Long had sent me an article about this procedure being carried out in California. Apparently, they have fitted up over 200 patients with this pacer and in most instances the results, according to the article, have been very encouraging. When I raised the matter previously, Michael’s colleague, at Papworth had spoken to another hospital, I think in Sheffield who were carrying out trials on this pacer but they had not been convinced that it really worked with MND patients. Just to be sure they had applied for a grant from the government to test it out over here and, having got the money offered the inventor of this procedure, who has sole rights to perform the operation, to carry out a supervised test in this country, all paid for by the NHS but for his own reasons he refused. Of course, one jumps to the conclusion that the claimed success for this procedure could have been exaggerated or perhaps only carried out on carefully selected patients with a higher chance of success than the norm. In any event, quite obviously the NHS would not pursue this procedure without it being carried out under supervision in this country. Even if it had proved to be a successful procedure all it did was to delay the day when the MND patient would require respiratory intervention. As I already sleep in a respirator, even if the NHS has approved this $20,000 operation, in my case I was probably passed the point when it would be beneficial.
That really was my big excitement for the day. I left around 9.45 (having been ready, as instructed since 8.30, the ambulance having been delayed, as usual, by heavy traffic) and returned around for .4.00, the actual tests and consultation having taken no more than half an hour. There would have been a time when I would have become agitated by his drawn out procedure but I am much more laid back now and, provided I have a good book to read on my Kindle, can stomach reasonable delays.
When I returned home, having not yet posted my blog for yesterday, being rather weary, I got thoroughly frustrated in attempting to copy John’s poem without leaving a blank page between it and my own entry, so I called help to Paul, who fortunately was working across the road with his brother and, in any case was shortly leaving for home and would have passed my door on the way Good old Paul sorted out the problem in about 3 min and, at that stage, I surrendered myself to relaxing in front of the television. The last programe I watched dealt with the domino affect from the overthrow of the president in Tunisia, followed by the effect on Egypt, Syria and Libya. Unfortunately, my carrier arrived to put me to bed before I saw the end of it but the fascinating thing that came out, early on, was how Facebook had largely been the method of communicating between the anti-government factions and without this method of communication they would certainly not have succeeded to the point which they have to date. Whilst applauding this channel of communication, it cuts both ways. It was our liberal approach to the Internet and associated App’s like Facebook which the rioters used to great advantage in this country a couple of weeks ago. In other words, you are caught between a rock and a hard place. If you block all such means of communication in troubled times then you’re no better than a dictator state, if you allow total freedom to use these methods of communication then you have to put up with the consequences.