Had my first visit from community nurse today and i feel a lot better about things. Why i was not refered 12 month ago is a mystery, to find this out from another sufferer and making the call myself is not the way it should have been, anyway its sorted now. Quite a few things have been noted and a few referals being made ;-) one of which was hospice, which at one time i wouldnt have fancied but now and after what i was told off a forum member i think it will be a good thing.
7/7/2011 08:57:32

Hi! Glad the community nurse was of help - Mark didn't have much contact with his until he really needed the support - it used to frustrate me they did not contact him, but when he really needed them they really stepped up the support and were brilliant. I would say try the hospice, they offer all sorts of support for you, Polly and Holly as well - we were offered art activities, complimentary therapies etc for the whole family. It's not a gloomy place and I know if I had the choice of attending one I definitely would, the first step over the door is the hardest.
Take care :-)


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Fighting My Losing Battle with MND.