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Type: Posts; User: Sueb

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  1. Replies
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    Glad you enjoyed your lunch out Doug. We love...

    Glad you enjoyed your lunch out Doug.

    We love meeting with friends and reminiscing about the past especially all the funny things that happened.

    It certainly makes us feel a whole lot better....
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    We are planning on being there Barry. So...

    We are planning on being there Barry. So hopefully will see you then

    Sue x
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    Fantastic news for you Dina, so pleased for you....

    Fantastic news for you Dina, so pleased for you.

    Steve is also coming home next week. Our coordinator from the care company has been to see us today and next Wednesday is the day. Can’t wait. She...
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    Hi Vicky Ask to talk to your Mnd care nurse or...

    Hi Vicky

    Ask to talk to your Mnd care nurse or the palliative care team and they should help you with this. Steve has spoken with both. We will be having a meeting with our MND nurse when Steve...
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    Ours was backdated to when Steve started using...

    Ours was backdated to when Steve started using his wheelchair full time. We get £230 reduction a year.

    Sue
  6. Thread: No PEG admission

    by Sueb
    Replies
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    2,668

    So sorry to hear of your loss. Take care Sue...

    So sorry to hear of your loss. Take care

    Sue and Steve
  7. Thread: Today's adventure

    by Sueb
    Replies
    35
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    3,233

    Hi Barry he is in D56 it’s in south block ...

    Hi Barry

    he is in D56 it’s in south block

    Sue
  8. Thread: Today's adventure

    by Sueb
    Replies
    35
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    3,233

    Steve is in hospital again. He came home for a...

    Steve is in hospital again. He came home for a week and ended up back in with his infection coming back and respiratory failure.. we thought it was the end but but miraculously he has made a good...
  9. Thread: inbox

    by Sueb
    Replies
    8
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    1,503

    I tried to reply to your message Shrew but it...

    I tried to reply to your message Shrew but it said your inbox was full

    Sue
  10. Replies
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    We find that patient transfer are not great....

    We find that patient transfer are not great. First time we used them they arrived late and we were late for an appointment and then after having spending an hour having Steves wheelchair mended they...
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    So sorry to hear of your loss. Take care Steve...

    So sorry to hear of your loss. Take care
    Steve and Sue
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    Hi Mick When Steve had his Rig fitted they...

    Hi Mick

    When Steve had his Rig fitted they just did bloods especially blood clotting, it took them 5 goes at this! Steve doesn’t like to give his blood away! and arterial blood gasses.

    Sue
  13. Thread: Riluzole brands

    by Sueb
    Replies
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    1,132

    Steve has lot of problems with Glentek. It makes...

    Steve has lot of problems with Glentek. It makes lips and tongue tingle. He takes it with yoghurt. We have had sun pharmaceuticals one recently

    Sue
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    When I open Steve’s rig lots of wind can come out...

    When I open Steve’s rig lots of wind can come out but I make sure I have a cloth as sometimes liquid can spurt out.

    Sue
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    I can relate to your boredom in hospital Dina....

    I can relate to your boredom in hospital Dina. Steve has been in for nearly two weeks now. He is so bored. There are four beds in his bay and the men come and go and he is still there.. He cannot...
  16. Thread: Steve in hospital

    by Sueb
    Replies
    10
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    1,708

    Thank you everyone. Steve has had everything...

    Thank you everyone.

    Steve has had everything tested and it came back positive for diabetes.. they have said they just need to get the insulin type and amount right. So hopefully the new one...
  17. Thread: Steve in hospital

    by Sueb
    Replies
    10
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    1,708

    Steve in hospital

    Steve is in hospital with pneumonia again. Think he caught an infection after one of his carers came with a bad chest. We had told them they couldn’t come but they still did. will be having strong...
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    Steve started with his arms and hands going...

    Steve started with his arms and hands going first. He couldn’t dress or undress himself. I put Velcro on his trousers, he wore Velcro shoes. His balance went because his shoulders dropped and would...
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    Hi. Vicky What about starting with a walk...

    Hi. Vicky

    What about starting with a walk around a local park, shops, visiting cafe or pub for lunch or attending a local Mnd group. These are things we do often. Steve wears a convene when he is...
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    Steve had similar ones provided by Orthics then...

    Steve had similar ones provided by Orthics then he had some that were moulded to is hands.

    Steve can’t use his hands to drive his wheelchair. He uses a foot plate to drive it has he still has...
  21. Thread: Hi Shrew

    by Sueb
    Replies
    0
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    752

    Hi Shrew

    Shrew just tried to send message and it says your inbox is full

    Sue
  22. Thread: Care/Respite

    by Sueb
    Replies
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    1,396

    I have had a carers assessment through our local...

    I have had a carers assessment through our local council. I was referred through the social OT at first and when Steve was in hospital with pneumonia the social worker referred again. The assessment...
  23. Thread: Micks funeral

    by Sueb
    Replies
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    2,124

    Sheila Mick would have been very proud of all...

    Sheila

    Mick would have been very proud of all his motorbike friends being there to give him such a great send off.

    Sue x
  24. Thread: Flail arm

    by Sueb
    Replies
    16
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    3,014

    My Husband, Steve, was diagnosed with flail arm...

    My Husband, Steve, was diagnosed with flail arm als in July 2014. He had been having problems with his hands for a few years and was diagnosed with carpal tunnel in both hands. Then in 2013 he had a...
  25. Thread: Good news

    by Sueb
    Replies
    111
    Views
    9,142

    Well done Lynne. I know what you mean about...

    Well done Lynne.

    I know what you mean about the pavements ours here are also atrocious. We often end up on the road except on the main roads of course. Steve takes paracetamol before we go out as...
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