2 July 2009

Today I had my quarterly MND assessment at Addenbrookes Hospital Cambridge. Having explained the deterioration in my hands and arms the doctor was not surprised and said, on the whole ‘I was doing very well’. In other words, I am going downhill pretty much at the rate that they anticipated (although of course, he neither hinted at more, or said such a thing; it is just my own personal interpretation.)

My Forced Vital Capacity (FVC) – blowing into a little handheld device -was 10% down on last time, in the supine position. The support nurse did not think this was significant but she obviously was sufficiently concerned to say that I should perhaps go to Papworth Hospital for a more detailed check. I believe this test is one that indicates your overall rate of deterioration more accurately than any of the others. Having said that the doctor examined my tongue and told me that, at present, the disease was not attacking my throat, so I really don’t know what to think.

One good thing that came out of assessment was that the doctor agreed there was a possibility I could still go to China in October. In other words, my flailing arms may not have completely given up by then. He suggested a further assessment in early September when a final decision can be made.

A team of people came in to the consultation to look at the feeding device and appeared to be very impressed. They included a dietician, an occupational therapist, a physiotherapist, a lady running a hospice and the engineer. The frame still needs a tiny adjustment on the armrest but once that’s done I believe it might be possible to have it tested within the hospital itself and then perhaps trialled in an NHS care home.

Enough boring stuff I think it’s about time I added another anecdote. With the Ashes starting next week (cricket against the Australians for those few people in the world who haven’t a clue what I’m talking about), I have added to Anecdotes The Cricket Match, which I hope you all find amusing.

Tags: Addenbrookes, assessments, China, feeding frame, weak hands

14 January 2010

My quarterly MND assessment at Addenbrookes Hospital today. Really there was very little to discuss other than the obvious deterioration of hands, arms and particularly legs. As usual I pressed Dr Alan to predict the rate of deterioration. Unwillingly he agreed that I would almost certainly eventually lose the use of my hands followed by my legs but could not predict when – although he thought possibly within a few months. In fact, I’m doing better than he predicted last March where he suggested I might lose the use my hands by the end of the year i.e 2009, but then, as he says, he always opts for the shorter timescale. This way anything longer is a bonus. He thought we would have a better idea at the next assessment in April. By then I will have paid another visit to Papworth hospital, so the respiratory side of things will also be clearer.

Seeing the deterioration in my legs and the difficulty I had rising from the chair, the doctor kindly agreed to write and start the ball rolling about the possibility of a chairlift. These things can tend to take some months to sort out so it’s not too early to plan ahead.

Tags: Addenbrookes, assessments