Sunday, 8 May 2011

A different Sunday

A very different Sunday from normal! No  church; instead we've been to the MNDA's Spring Conference in Bristol. I think I agreed with Hilary's verdict that it was the best spring conference she or we'd been to - the fourth for us. We particularly like the conferences because of the people one meets. Some of us have MND in some form; others are carers, and association visitors. There are also staff from the Association headquarters and trustees - as well as exhibitors, and of course speakers (of whom the main one was Prof Kevin Talbot, who's my new consultant).

We had to get up early (for me) and drove through the showers. This year it was at the Aztec West Shires Hotel. Not as grand as The Celtic Manor at Newport last year. No Danish pastries, as Jane observed! But it was fine, well, AA 4 stars, to be exact.

The first session, "How will changes to the NHS and social services affect people with MND?", was of course highly topical and important. It was led by the MNDA's Head of Public Affairs, Farah Nazeer, and Campaigning Head, David Hanson. It's clear that the proposals as they stood (before the "Pause") posed dangers for disabled people, particularly with MND which is normally so rapid that health care packages and social service provision can't keep pace. They also pointed out that there are also opportunities. Not surprisingly they knew their stuff. My particular reaction was to be grateful that MND patients have such competent advocates.

After a filling lunch, Kevin Talbot talked particularly about the research going on in Oxford which is one of the world's centres of MND research, and particularly the search for a biomarker (a diagnostic indicator) for the disorder. He has the gift of exceptional clarity in explaining science to amateurs. I have a feeling that Theresa, who, like me, has PLS, raised a potentially fruitful point about the usefulness of MND patients' diagnostic records for research.

So a good day, meeting new people and seeing new gismos - and oh yes, there was an ITV cameraman and reporter there, so you might see my friend, Norman, with discreet product placement of My Donkeybody behind him (!), being interviewed about one effect cutbacks have already had for him, in MND Awareness Week in June, if you live in the West! When we emerged, it was warm and sunny, and so we drove home in a mellow mood - which was somewhat dented by the discovery that Red Bulls were rampant in Turkey, while both Williams were lapped, and the Premiership is virtually decided. :(

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