My quarterly MND assessment at Addenbrooke’s today. I didn’t get my usual team, Dr Chris Allen ,was elsewhere and even the co-ordinator (Jo) was attending to another group but she did pop in for 5 min or so just catch up. Since Jo has had her baby she only works part-time so I was allocated to her other half for my assessment (whose name I am ashamed to say I have forgotten). The only other person there was the Speech Therapist who agreed that, although my voice has changed slightly that is a result of the weakening the diaphragm rather than anything more sinister. We also had another lady in attendance who was observing the whole process as she was setting up a similar assessment centre in Bury St Edmunds (?).
As usual I found myself having to do most of the talking after answering the question ‘ How are you keeping’. My own assessment of the difference between this visit and the last was that my arms are slightly weaker and possibly my legs but not using the m it is difficult to say. Otherwise, there was very little else of substance to deal with.
They looked at the Papworth report in which Dr Ian Smith had said that the volume of my lungs had been consistent for the best part of the year and he said that ‘that was very reassuring’, whatever that means!
I raised the question of the Multifocal Motor Neuropathy (MNN) and, of course, Jo knew all about it as they have several MNN patients. I knew that it was 1,000,000 to one chance that I have been mis-diagnosed but having been made aware of the mistake made by my correspondent from Australia, who was also initially diagnosed with’ flailing arm syndrome’ until it was changed to MNN, it would have been foolish of m Dr Chris Allen was not there, I asked Jo to specifically ask Chris to answer my question, that they have been through the process of eliminating the possibility. I know this is rather remove impugning the experience of my consultat but one has to grasp at every straw and I would not have done so had I not received the case history of the gentleman in Australia, who was misdiagnosed with’ flailing arm’ syndrome only to have it changed months later to NNN.
We went through the problem of the pain I am suffering from a night and the coordinator made note of the need for an urgent follow-up from that injection which I had at Papworth and, to the best of my recollection, this was about as far as we went. I mentioned that we had cracked the running nose (rhinitis) by using Rhinatec nose spray, and the rumbling tummy, which caused me to be so bloated, had been improved by a change of medication.
Then, off to my second appointment at the Eye Clinic, which was scheduled for 2 p.m. ( and it then being only 11.10 p,m, I would have been in for a long wait) but that kindly and helpful receptionist, Angela, managed to squeeze me at the front of the long list for the consultant to see. (I needn’t have bothered to exercise my charm on Angela, for in the end I had to spend two hours in the draughty front hall waiting for the ambulance to bring me home.) The main object of my visit to the Eye Clinic was for the consultant to check up on the left eye on which I had the cataract removed. He seemed well satisfied with the outcome and, as a result, we discussed doing the second eye. Although the cataract in this right eye was not so serious as the earlier one he thought it well worth doing. Accordingly he has undertaken to fast track me as much as he can, bearing in mind my uncertain life expectancy.
As I was leaving I asked the consultant where he came from and he said Greece. So I commiserated with him over the financial state of his country I suggested that (from personal knowledge) one of the main problems is that a lot of people do not pay their taxes.
He agreed that certainly was one of the main causes but also said was that corruption was rife and we both agreed it would probably take a decade of austerity to bring Greece back to equilibrium.
After leaving the Eye Clinic I made my way to the transport desk in the front hall and on the way there an elderly gentleman managed to back his wheelchair into me. Unfortunately, my laptop was in a bag hanging on the back and it was not until I took it out to read my book (on Kindle) that I noticed a small crack in the screen at the top which had produced a large black spot the size of a plum. Clearly, I shall have to have a new screen. My dilemma, in reporting this now is that they will want to take the laptop away and Toshiba only offer a three-week turnaround. That means that, bearing in mind the Christmas holiday, I would not see my laptop again until sometime in early to mid January. As it is my right arm and my only means of communicating, inwriting,with the outside world I shall have to cook up something with ‘Paul’ the computer to avoid this immense void in my life â€“ no emails; no Blog; no reading from my Kindle books and no diversion from Sky and the various television i Players.
Not a happy prospect, particularly concerning my Blog â€“ how many of my faithful followers would I lose?. I will have to get Paul or Richard, (Morris) my web designer, to make a short entry explaining the problem for my readers, reassuring them I had ‘not popped my clogs’! (I should explain to my overseas readers that to ‘to pop one’s clogs’ means to pawn them being the only thing you have left, for a small loan, as you would have no further need of them as you were going to die. No doubt, the money raised would be spent on liquor to dull the ending.! Hence ‘pop goes the weasel’ from the nursery rhyme. The weasel being absolutely essential to a weaver to make any money,)
Where was I before I started all this nonsense? Ah, I remember I was bemoaning the fact that my laptop had been damaged following my visit to the Eye Clinic. I should have completed explaining about this visit.
After giving me the okay for the eye that had been operated on, the consultant looked at the other eye and agreed that it would be sensible to have that done too. He knows about my MND and how valuable every month is to me, and very kindly promised to try to fit me in on any cancellation they got provided I would accept a 24-hour notice. I agreed, praying that if telephone call came, it would not clash with any other arrangements we might have made.
Well, that’s about it I think you would agree that after all that grief it has not being a particularly happy day and I really deserved the large whisky when I got home!
I finish with a typical medical joke. Click here