10 Mark 2011

Posted by DMC on 10 March 2011 in Diary |

I said this was a busy week. Today I went off to Addenbrookes Hospital for my quarterly MND assessment. Fortunately, in the meantime, I had received the consultant report is from the orthopaedic clinic, at Addenbrookes which I attended some two or three weeks ago.

The long and short of it is that there is no obvious explanation for my painful shoulder or hip, which only comes on during the night. The x-rays showed  no obvious sign of osteoarthritis  in either knees, hip or shoulder. The consultant suggested it was something I should take up with my GP or the MND team or possibly get a referral to a Pain Consultant. The consultant I actually saw on the day wrote a separate letter in which he suggested the source of the pain might be muscular spasm or muscular weakness due to my neurological condition. The bone scan, as I reported earlier, showed no signs of metastasis (cancer of the bone) which at least is encouraging.

The MND assessment today but slightly different from usual in as much as I saw a young lady, start with, who I can only assume was a registrar under Dr Chris Allen. The asked me all the usual questions. I then went into Chris’s consulting room where Jo Sassons, the MND coordinator basically took the session. In addition, there was a speech therapist and a physiotherapist as well as a couple of observers from Ipswich. The physiotherapist suggested she would ask her opposite number locally to pop in and see me to observe my walking and to generally advise on exercises. We discussed the choking episode and how we should deal with a subsequent event of the same nature with me sitting in my NHS chair. Basically, the procedure is the same as if one is standing up. Grasp the patient round the waist locking your hands and wrists and give a sharp,  tight squeeze. However, Chris did not think that my choking was necessarily anything to do with the MND as I do not appear to be having any swallowing difficulties. In other words it’s a sort of thing that can happen to anyone at any time.

We spent quite a lot of time discussing the possibility of a living will and what circumstances might have to arise before the medical team attempted to resuscitate me. Jo kindly tried to set out the problems in making such a will which is obviously not as straightforward as one might think. So far I have made it clear that if whatever happens to me meant that I would have to spend what time I had left in hospital or in a hospice then I would not wish to be resuscitated,. Similarly, if I need invasive surgery to breathe i.e a tracheotomy,  or had to be fed through a tube in my stomach, again I would not wish to be resuscitated. I was heartened to learn that if I suffered from some cardiac arrest or similar and the medical team thought it futile to resuscitate me they would not do so. They will only carry out this procedure if there was a reasonable chance of recovering to the state that I was in before whatever caused me to be taken to hospital. In any event, Jo will give a little more thought to drafting something for ‘my lovely’and  I to consider.

When Dr Alan joined us I mentioned my relatively new symptom of very occasional trembling lips and gums. He did not seem too concerned about this and said that it did not necessarily presage the onset of  bulbar (throat) problems. Even non-MND patients can get this from time to time. Apart from that we discussed the possibility of a different form of painkiller to alleviate the joint pain at night and Jo suggested looking into the possibility of getting me NHS Continuing Care, now that I can no longer do anything for myself. There is no guarantee that I will pass the assessment but if I did, apparently this care is not means tested which would be great. As I explained to Jo my main concern was ’my lovely’ who is managing wonderfully well at present but when I am completely unable to shuffle backwards and forwards on my frame, and have to rely heavily on hoists, she really will require some assistance or, at least, occasional respite. I will, of course, receive a full written report in due course.

Late this afternoon, my kind friend Duncan,  came here, after a long day at work, to tidy up my new computer for me. and as usual did a great job in adding monitors the three programmes, which I have used over the years, and creating some useful shortcuts.

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