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  • Heather R
    replied
    Hugs everyone x

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  • denise
    replied
    Morning hugs. Poplar fluffy seeds blowing around like snow this morning. George is fascinated and has gone off to investigate. Not sure my asthma will be happy.
    😯🐱

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  • Tabbycat
    replied
    Evening hugs πŸ€—πŸ€—πŸ˜€πŸ˜€

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  • denise
    replied
    Morning. A big hug to everyone. πŸ’—πŸ’•πŸ€—πŸ’—πŸ™„

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  • denise
    replied
    Morning huggable people. Yes I'm on coffee and digestive biscuits now.
    πŸ’•πŸ˜˜πŸ€—πŸ’—

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  • WheelsOfSteel
    replied
    Sending hugs from Italy, so they probably include a crafty bum pinch too

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  • TinyLady
    replied
    Sending hugs, I have certainly made good use of the ones from you all - and the advice.

    I am going to get someone to contact wheelchair services. I have an appointment in a few weeks. Trouble is they never have what I need when I go and have been waiting for back support foam as chair base too deep, much larger control knob as mine is causing pain, pressure cushion, adjustments as I fall down back of wheelchair, service as it is groaning and squeaking terribly plus switch on of lift functionality... only been waiting 6 weeks so far. In the meantime we are tying my foot to the foot plates 🀣

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  • Tabbycat
    replied
    Hugs to all πŸ€—πŸ€— after reading all those posts from yesterday you all certainly need them.

    TinyLady I agree with Ellie the OT should sort out the feet falling off the footplates. Ring the wheelchair service that supplied your wheelchair, they should suggest a solution.

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  • Ellie
    replied
    Originally posted by denise View Post
    I usually get told that they dont know anything about peg/mnd.
    For many things it is irrelevant if community nurses have experience in MND and PEG tubes - skin integrity, wound care, pressure sores, constipation, catheter management etc. etc. follow the same pathways whether on a person with an MND or on a person without MND.

    In some areas maybe it's a Dietitian who looks after PEGs or, if a person has a food pump, often the pump provider provides care of the PEG tube too.

    It sounds as if some nurses are very quick to use Manuel's famous 'I know nothing...' as an excuse 😟 but, I have to say Denise, that Stephen's nurse actually said "only if I want to", is a new low. 😲😑

    So please have a hug with a cuppa and 6 chocolate digestives πŸ€—πŸ€—πŸ˜˜πŸ˜˜

    (I'm not even going to mention the letter...)

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  • Heather R
    replied
    Hugs everyone xx

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  • denise
    replied
    Morning everyone. I'm not sure what community nurse can do. I usually get told that they dont know anything about peg/mnd. When I asked if nurse could take blood/urine - only if she wants to!

    Stephen had his NHS health check. They sent results to my daughter stating he is at risk of heart attack in next 10 years and could be prescribed statins.

    πŸ™„ I could do with a hug. Xxx

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  • Ellie
    replied
    Originally posted by TinyLady View Post
    ... she says she can't help with them (constipation and feet falling off wheelchair foot plates) so what is the point of her visit?
    If that were my nurse Tiny, she could help with the constipation by recommending different laxatives, inserting suppositories and even doing enemas (I never had one but was 'threatened' with one, thankfully I went!!)

    She probably wouldn't have done anything about the footplates, but would have told my OT - they all sit near each other in the office.

    When I had a cut on my PEG site, she came 3x week to check it and brought me dressings. She is also responsible for making sure I stay free of pressure sores. xx

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  • Heather R
    replied
    TinyLady That sounds very strange. A district nurse comes to me every Friday to move my peg tube in and out and round about, to stop it sticking (what do they call it? Advance and rotate), and check for any problems. They came 3xday to give me eye drops when I had a cataract operation. How frustrating for you when you are in need of so much help, that she came and can’t help with anything!! X

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  • TinyLady
    replied
    Heather R - can I ask what the district nurse does (apart from good hugs).

    Mine just sits down asks why she is there (I had no idea she was even coming) so I don't know. So then I ask her a couple of things and she says she can't help with them (constipation and feet falling off wheelchair foot plates) so what is the point of her visit? What can/ do they help with?

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  • Ellie
    replied
    Originally posted by Heather R View Post
    My favourite district nurse came and gave me such a lovely hug
    That's a great medicine Heather πŸ’–

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