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Problems lying in bed.

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    I'd like to see the photos as well so post them up when ever the place is done. I'm lucky here in Ireland as my community OT is brilliant and helps me whenever she can. Plus with only one really main neurologist in the country specializing in mnd her team keeps in touch with both the hospital based specialists and the community care team. But really the Irish mnd charity is brilliant. They supply most of my stuff that in theory the health service is supposed to supply. I'd be lost without them.


      Hi Mick,

      It's great to hear that you are receiving such good support from your OT etc. It sounds like you are also blessed with having lovely parents, who look after you very well - your parents seem very kind and caring!

      Best wishes,
      Kayleigh x
      Last edited by Kayleigh; 28 February 2019, 19:15.


        Originally posted by Ellie View Post
        A dingy !!! That's hilarious Ginger Glad it works for you.
        Yes Ellie he says "are you all aboard chocks away!" "Where are you sailing to tonight"you have to have a laugh. 😂


          Originally posted by jonboy53 View Post
          I am going to provide details of my MND facility when it’s finished, with photos etc.etc.
          Still waiting for ypur photos.😁

          You are very lucky to get the equipment you need so easily.
          My mums OT is not so helpful. We have to buy most things mum needs or else if she waits we fear things wont come in a timley fashion to be of any use. We cant even get an over the bed table let alone any thing more technical. Mum was going to be sent a profiling bed which we were so glad to be offered as this would have been so expensive, Dad rang andasked the OT if mum could have an over bed table at the same time as they bring the bed, only to be told we dont give them out anymore, you'll have to buy your own.

          Back to the reason for posting......
          Any photos for use jonboy53.??


            Jonboy has already kindly posted some photos on the following thread - you will see from his posts that the equipment (apart from the bed) wasn't provided for him and so he had to fund it himself (approx £20k):-


            In England, what we get provided with free of charge is a postcode lottery. I don't think it's supposed to be like that - but, unfortunately, I think that's the harsh reality that many of us are faced with.
            Last edited by Kayleigh; 15 May 2019, 19:09.