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Jude

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  • Deb
    replied
    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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  • Jude11
    replied
    Thanks Terry, seems to be the way forward. I will ask OT when they come Tuesday

    Judy xx

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  • Terry
    replied
    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

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  • Lynne K
    replied
    Happy birthday for your husbands birthday tomorrow. I hope that you all enjoy the roast. Lynne

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  • Ellie
    replied
    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.

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  • Jude11
    replied
    Hi Debbie
    Yes I have barrier cream on bottom, it is so greasy!! Hopefully air mattresss will be better.

    Judy xx

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  • Deb
    replied
    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

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  • Kayleigh
    replied
    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; 9 November 2019, 22:04.

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  • Jude11
    replied
    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

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  • Jude11
    replied
    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

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  • Ellie
    replied
    Hi Judy,

    Start by contacting your OT who should assess your needs and your issues.

    If your arms have enough strength in them, you can get bed rails or bars which you grab to help you turn on your side (you don’t need much manual dexterity)

    If you do end up having to sleep on your back all night, the key is having the right mattress - alternating air ones are best. I can’t move in bed and sleep very comfortably all night on an alternating air mattress.

    Do you have a profile bed (a bed that’s adjustable head, end and height) ? By raising the end, for example, you redistribute your weight and take pressure off various joints and muscles. Or just putting a pillow under your knees can take pressure off the hips. There are also long cushions/pillows which could keep you sleeping on your side, though you may not necessarily be able to turn over.

    There are fancy beds which also swivel or tilt, but these generally have to self-funded, unless you’re very lucky !!

    An air mattress can usually also be put on a standard bed - there are different types.

    Be aware that morphine causes constipation, so keep an eye on that. Hopefully with a better bed set-up, you won’t need painkillers…

    In bed, I often get sore muscles at the very tops of my thighs, so put hot wheat packs on them, which works a treat.

    Hope you and your OT find a solution.

    Love Ellie.

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  • Ellie
    replied
    Judy needs advice on hip pain in bed.

    Originally posted by Jude11 View Post

    any advice guys, can't turnover in bed any more as legs don't move so sleeping a lot on my back. This is making my hips very painful, tried pillows various places without success. Saw GP yesterday who have me morphine based painkiller which made sleep bit better but makes me feel sick. What are your experiences?

    Judy xf
    Judy, forgive me for posting your post in another thread but I fear it may get lost in chat about soggy crisps flavoured with out-of-date spices!!!

    Love Ellie.

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  • Sheila
    replied
    Hi Jude, and a warm welcome to this very friendly forum. Lots of help and advice on here.
    Take care
    Sheila

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  • Deb
    replied
    Hi Jude and a warm welcome to the forum,

    I am so sorry for your diagnosis. I am sure you are still reeling from the shock, even if you have had symptoms for some time . It's good you posted because the forum is a place for emotional and practical support from people who really understand and as Dina said, there is a wealth of knowledge.

    It's great you have family and friends to keep you cheerful and stay positive. I hope you have news of your powerchair soon.

    Love Debbie

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  • Lynne K
    replied
    Hi Jude. I'm sorry that you've had to join us on this horrid journey. As others have said you have found a great support resource here and non judgemental friends who are either on a similar journey and carers/family of MND sufferers. Good luck with getting a powered wheelchair very soon. The idea to ring MNDA is a good one. Take care. Lynne

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