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Thread: Jude

  1. #11
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    Thanks Ellie
    I have OT coming on Tuesday so hopefully they will sort out the bed, I have grab rails but can't move bottom half any more so they don't work. They did mention an air mattress so fingers crossed!!

    Not sure that I will take a tablet tonight as the sickness has only just worn off, my husbands birthday tomorrow and our son is doing a family roast and don't want to feel sick for that.

    Judy xx

  2. #12
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    Thank you for reposting my thread I obviously did it wrong in the first place!!

    Many thanks to you all for the advice and support

    Xxx

  3. #13
    Forum Member Kayleigh's Avatar
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    Hi Judy,

    I hope you and your family enjoy celebrating your husband's birthday tomorrow. Your son sounds very kind and thoughtful and a home-cooked Sunday roast sounds delicious.

    I hope your husband has a very Happy Birthday!

    Love and best wishes to you and your family,
    Kayleigh x

    P.S I hope your OT can supply you with a suitable mattress (and possibly an electric profile bed, if you don't have one already) so that you can sleep more comfortably. (Sometimes, district nurses can supply beds and mattresses but it sounds like your OT is being very helpful as well.)
    Last edited by Kayleigh; 9th November 2019 at 23:04.

  4. #14
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    Hi Judy,

    Enjoy your husband's birthday Sunday roast. It sounds better than soggy crisps even though they are delicious too.

    I sleep on by back too as I am unable to move my legs. I can use my arms to move them but it's a mega effort and wakes me up. I am awaiting an air mattress too but I do sleep OK. As I dont move I have been warned by my nurse and the very kind friends on this forum about pressure sores. We cover my legs and feet in barrier cream every night. You get lovely smooth legs and a very greasy bed!

    Hopefully you will get some advice from your OT soon.
    Love Debbie x

  5. #15
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    Hi Debbie
    Yes I have barrier cream on bottom, it is so greasy!! Hopefully air mattresss will be better.

    Judy xx

  6. #16
    Forum Member Ellie's Avatar
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    Gosh ladies, I do hope those pressure relief mattresses come very soon - I know I am always banging on about pressure sores but they are definitely to be avoided. I worry when I hear things like this...

    Debbie, I wonder could your nurse give you heel protectors as an interim measure? They're usually in stock, so no real wait for them.

    Sheepskin is nice for some short-term, low risk pressure relief, but might be a bit warm for bed?

    Enjoy Strictly, Debbie.

    And enjoy the Sunday Roast, Judy (jealous!) Happy Birthday Mr J.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
    Forum Member Lynne K's Avatar
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    Happy birthday for your husbands birthday tomorrow. I hope that you all enjoy the roast. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #18
    Forum Member Terry's Avatar
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    Hi Debbie and Judy,

    Do try to get a moving mattress if you lay down in one position over night. You are at great risk of bed sores if you do that. I think that one of first signs is a redness of a patch of skin that doesn't go away even after a few hours of being up. I don't think that it has to be painful.

    I get hip pain if I sleep on my side for over a hour or so but clearly that is not your problem.

    As Ellie says, raising your legs with a good pillow under your knees my well help ease the pain and you can adjust a profile bed during the night to suit.

    I think Kayleigh is right in saying that beds and mattresses normally come from the district nurse. Well that was the case eight years ago.

    Love Terry

  9. #19
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    Thanks Terry, seems to be the way forward. I will ask OT when they come Tuesday

    Judy xx

  10. #20
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    Thank you Ellie, Kayleigh and Terry for the top tips about pressure sores.

    Like Judy I am going to speak to my nurse and OT tomorrow. Sheepskin sounds very nice, however.

    Ellie, you're definitely not " banging on !" My mum had a pressure sore after a major operation a few years ago and she said it was the worst thing so you are so right about preventing them. It took a long time to heal.

    Love Debbie x

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