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    #46
    Hi Jonboy,

    Sorry to hear that you were treated in such an appalling way at the hospice.

    Now you are back home with your lovely wife, I hope you can relax as much as possible and enjoy your home comforts. Home is where the heart is and there's no place like home (and your home has a far superior MND facility than can be found at any hospice!!).

    Love and best wishes to you and your wife,

    Kayleigh x

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      #47
      thanks K

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        #48
        Sorry Jonboy for your experience at the hospice,

        It's so worrying that we can be treated like this and your wife is unable to have a break or relax. I am sure she is happier with you being home because she must have been very worried.

        I hope you are comfortable at home now. As Kayleigh said there is no place like it.

        Love Debbie x

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          #49
          Sorry to hear you had such bad time at the hospice. Never been in one myself yet.
          Hope you are comfortable at home now.
          Best wishes
          Sheila x

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            #50
            My wife and I are going to get a carer in maybe two days a week to give her a break. She is very small and I still weigh 80kg. I havve spent £20,000 on a proper MND facility at home. I can go to the loo and wash my hair have a a]shave and strip wash in 55 minutes. Getting harder because my arms are failing.

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              #51
              Hi Jonboy,

              I hope all goes well with finding a good carer.

              I don't have paid carers at home yet, but have been looking into some of the options concerning local care agencies etc - some of the information on the following thread might be useful:-

              http://http://forum.mndassociation.org/showthread.php?9111-Home-Care-Agencies-(online-search-facilities)-amp-funding-for-care&p=89315#post89315

              Best wishes
              Kayleigh x
              Last edited by Kayleigh; 14 June 2019, 13:19.

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                #52
                thanks K

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                  #53
                  Hi Jonboy

                  I just wish we had the space to create a proper wet room et cetera for me to provide for the future and to make home somewhere I would want to come back to - we moved into this place a year before I started to see the 1st signs and spent more money than we will ever get back on it before we realise what I had - late diagnosis……

                  Just wondering if we can afford yet more money to make it better or move on to somewhere is better suited to us - which of course means moving out from the centre here to somewhere cheaper and losing our local connections all the services we value and our local friends.

                  We could get somewhere smaller of course, but that would seem such a backward step.

                  Warmly
                  Warmly


                  Andy

                  ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                  "Things turn out the best for people who make the best of the way things turn out"

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                    #54
                    Mi bathroom is only 8 feet by 8 feet. It is upstairs so we steered away from a wetroom, wetrooms always leak. the sink is placed perfectly for a strp wash, and the Closomat Palma Vita washes my backside. We didn’t want to ever move, thats why we bought this house. Everything we have done is only temporary, nothing can stop me dying, and I try to be aware of that. I have bought myself a few extra months with a bit more dignity, but now three limbs have packed up, and breathing is getting worse. I am not afraid of dying, I just don’t want to be there when it happens.
                    I don’twant a peg, or a tracheostomy or eygaze
                    Me „what is gonna happen doc”
                    doc „dunno every patient is different”

                    What a crock - it is gonna be ghastly

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