Sunday, 19 April 2009
Today we went to the MNDA Spring Conference in Taunton. I used to avoid them, until two years ago, I think because I was frightened of being depressed by seeing others with the disease. It's odd, isn't it, how one thinks one's different, when actually all of us are as human as each other? Of course, there are different types and stages of the disease - and so there were today; but we were all in the same boat. And, strangely, it was encouraging rather than depressing, even though I was aware that some of the delegates would have died before next spring. I guess about a third of us had MND, a third were 'carers', and a third connected in other ways with the association. I have to say the MNDA does well by us in such events. It was in a Holiday Inn; the lunch and tea were good (see above). The talks were informative, but the best thing was talking to others and carers in similar situations. There were such nice people there. One staff member of the association mentioned the proposition that nice people are particularly prone to MND - a dangerous and specious idea, it seems to me. It's a post hoc, propter hoc argument, as WW lovers will understand. It's more likely, I think, that when disaster strikes in the form of the diagnosis you just become more aware of others in similar or different trouble, and more grateful for kindness received.
I actually found people inspiring as well. There wasn't a pervasive sense of self-pity. A number of people had lost the ability of speech, and communicated by writing or the famous Lightwriter which synthesises a voice (like Prof Hawkinge's) from a souped up keyboard. (By the way it's about time they came up with some familiar English accents in text-speech programs.) Some people were facing a whirlwind assault from the disease, whereas others were waging a protracted war of attrition. But everyone was intensely interested in the latest research, not so much for themselves but for those who'd be afflicted in years to come. And people hadn't lost their humour. We were discussing the new idea of personal care budgets (meant to give control to 'stakeholders' over purchasing their own 'care packages'. Anyone who's read my book (or met my fab OT and physio) will know how blissfully happy I am with those caring for me, and I personally think it's a daft idea. Anyway, Ray who was on our table and using a lightwriter made the comment, 'If Gordon Brown can't manage a budget, how do they think we'll do it?'
Then we headed home on the M5, joining all the holiday-makers travelling home after the holiday, which was fine until we got near Weston-super-Mare, when everything ground to a halt. In due course an ambulance zoomed past on the hard shoulder and a helicopter buzzed overhead. The sun was shining; people were relaxed, walking and chatting; with one or two exceptions it was England at its endearing best. An hour later, we began to move again. It wasn't long before we were home, sufficiently stimulated for me to try downloading the photos on my mobile on to my newly acquired PowerBook via Bluetooth! A first for me, the result of which you see above.