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  1. Replies
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    1,276

    Our MND phoned and suggested we register...

    Our MND phoned and suggested we register ourselves on the government vulnerable list and sent us the link. I did this for Steve last.

    Steve as had another infection and been out of hospital for...
  2. Thread: Terry

    by Sueb
    Replies
    101
    Views
    12,603

    Sad to hear you are still in hospital Terry....

    Sad to hear you are still in hospital Terry. Hopefully they will sort you a care package soon. We have been through this and it can be frustrating but we have a good team who look after Steve, and...
  3. Thread: Lynn & Dave

    by Sueb
    Replies
    6
    Views
    1,605

    Welcome to both of you. Sorry to hear of Lynn’s...

    Welcome to both of you. Sorry to hear of Lynn’s diagnosis. You will get lots of support in this group.

    Sue
  4. Thread: Terry

    by Sueb
    Replies
    101
    Views
    12,603

    Sorry to hear you are not well Terry. Hoping for...

    Sorry to hear you are not well Terry. Hoping for a quick recovery for you..

    Sue x
  5. Replies
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    38,591

    So sorry to hear about your fall Barry, glad you...

    So sorry to hear about your fall Barry, glad you are ok. Hopefully will see you at 2Thursday in November.

    Glad you are home Dina. Steve came home last week. It’s tiring being home after a stay in...
  6. Replies
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    38,591

    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....
  7. Replies
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    38,591

    We are planning on being there Barry. So...

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

    Sue x
  8. Replies
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    38,591

    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...
  9. Replies
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    1,487

    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...
  10. Replies
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    2,537

    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
  11. Thread: No PEG admission

    by Sueb
    Replies
    28
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    7,507

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

    So sorry to hear of your loss. Take care

    Sue and Steve
  12. Thread: Today's adventure

    by Sueb
    Replies
    35
    Views
    5,554

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

    Hi Barry

    he is in D56 it’s in south block

    Sue
  13. Thread: Today's adventure

    by Sueb
    Replies
    35
    Views
    5,554

    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...
  14. Thread: inbox

    by Sueb
    Replies
    10
    Views
    3,024

    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
  15. Replies
    4
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    1,090

    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...
  16. Replies
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    14,240

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

    So sorry to hear of your loss. Take care
    Steve and Sue
  17. Replies
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    1,211

    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
  18. Thread: Riluzole brands

    by Sueb
    Replies
    7
    Views
    2,447

    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
  19. Replies
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    1,343

    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
  20. Replies
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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...
  21. Thread: Steve in hospital

    by Sueb
    Replies
    10
    Views
    2,225

    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...
  22. Thread: Steve in hospital

    by Sueb
    Replies
    10
    Views
    2,225

    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...
  23. Replies
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    3,230

    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...
  24. Replies
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    2,459

    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...
  25. Replies
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    2,194

    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...
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