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| Prof Kevin Talbot |
This afternoon we went to our local MNDA meeting. It was in the Peartree Holiday Inn - and there were a lot of us there. The main meat of the afternoon was feedback from Professor Kevin Talbot, the boss of Oxford's MND Centre about the research going on there. As usual he was very clear for us lay folk about very technical matters. The thing that made me most sit up was the fact that now he is involved with the three largest pharmaceutical companies. As I understand it this is because he feels research has now reached the stage where the drug companies' vast libraries of experimental drugs might usefully be tried on MND-affected stem-cells. Members of his team are now producing sufficient of the latter to try "treating" them, the cells. He told us that, though he believed a cure would be found one day, there was a long way to go yet and it was impossible to predict.
Something else he told us was that the specialist nurse who runs the clinic, Rachel Marsden, and the specialist OT, Jenny Rolfe, the country's expert on wheelchairs for neurological patients, have been appointed to NICE's (National Institute for Health and Care Excellence) advisory panel on MND. I reflected again on how blessed I am to have this Care Centre monitoring my condition.
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| Jenny Rolfe |
Jenny herself reported on the International MND Symposium of last December, which happened in Milan. She concentrated on the care side, such as improving non-invasive ventilation, the evidence of the pros and cons of different direct feeding methods, the devising of an optimum powered wheelchair for people with MND - the Neuro Powered Wheelchair. Judging from my experience there can be no one better than Jenny to know exactly what's needed. One thing she mentioned - which clearly appealed to a lot of others - was the Cuddle Chair, a riser-recliner sofa, designed so that the MND person could have two armrests, essential for standing up, but also can sit
with someone, rather than always in isolation. I looked it up on the internet when I got home (Wealden Rehab Kent); ominously there's no price. But it would be nice....
