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Thread: Meltdown

  1. #51
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    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; 14th June 2019 at 14:19.

  2. #52
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    thanks K

  3. #53
    Forum Member nunhead_man's Avatar
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    Jul 2017
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    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. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  4. #54
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    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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