To top off a fairly medically orientated week we went off today for my quarterly MND assessment at Addenbrooke’s Hospital. We drove there and I tottered, across the car park and up to the third floor, neurological clinic using my gutter frame. To be frank that was about as far as I could manage before my arms began to get tired.
We had the â€˜Aâ€™ team out. First of all a dietician Â Carol, who, thank goodness. thoroughly approved of â€˜my lovelyâ€™sâ€™ well-balanced diet, which is not surprising as she has some sort of diploma in dietetics. Then, Sally, the physiotherapist who gave the thumbs up to my current minimal exercise routine. At that stage, the boss Dr Chris Allen joined us and went through the various reports from Michael (my Australian doctor friend) and the report from my visit, Â 10 days ago. to Papworth Hospital. TheÂ Papworth HospitalÂ report, which we received yesterday, contained a lot of statistics covering the review of my ventilatory status. Without making a comparison between these figures, and those from the previous visit, they don’t mean a lot to me but summarise, in the letter, as a â€˜gradual decline in respiratory statusâ€˜. Some concern was expressed concerning my abdominal distension on whichÂ an ultrasound scan and an MRI had been carried out. Papworth suggested a referral to a local gastroenterology service if it was felt appropriate, however Dr Alan seem to think that the reason for the distension was the loss of stomach muscles and therefore any further referral or investigation was unlikely to reveal any problem. Nothing else in any of the reports from Papworth, or from Mick, seem to cause Dr Allen any consternation As usual, when pressed for a prognosis as to my rate of deterioration in any particular area, he was really honestly unable to give any realistic forecast. He did say, however, that people with flail arm syndrome, which is what I have,Â tend generally to deteriorate fairly slowly — whatever that means.
I suppose the only slightly alarming thing, from my point of view, was that he mentioned that the deterioration in my diaphragm marked the beginning of a throat problem but then again that might well be some time distant. I wonder if that’s what the doctors tell all patients so as not to alarm them? I asked him if it was inexorable that all MND patients ultimately suffered from a problem with their throat â€“ swallowing; breathing; speaking -and he agreed that that was the case.
I mentioned to Chris that I was having trouble sleeping at night due to pain developing in my hips and knees joints. This apparently is not unusual due to lack of exercise and the loss of muscle around the joints. He has prescribed some Ibrufen mild painkillers which should help.
Coordinating this whole programme was our dear friend Joanna Sasson, who, I was delighted, has now returned having had her baby son six months or so ago. We are extremely fortunate in having such a good team people to support us.