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  1. Replies
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    Douglas has registered but we have to wait until...

    Douglas has registered but we have to wait until they can extend the research to sites in England
  2. Thread: Dina RIP

    by chrissie57
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    2,440

    Haven't been on the forum for a few days so have...

    Haven't been on the forum for a few days so have only just seen this devastating news.
    Douglas and I were privileged to meet Dina when they were both in Wythenshawe; she always got a smile from...
  3. Thread: Terry

    by chrissie57
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    Thinking of you, Terry, and wishing you a speedy...

    Thinking of you, Terry, and wishing you a speedy recovery.
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    So sorry for your e

    So sorry for your e
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    Hello, Ellie & Dina Sorry, Ellie, I did have...

    Hello, Ellie & Dina

    Sorry, Ellie, I did have watched the video a couple of times. The mask is not unlike the full face mask he has been trying to use but the one in the video seems to have wider,...
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    Well Douglas should be home on Wednesday 😊. ...

    Well Douglas should be home on Wednesday 😊.
    Ubfortunately I seem to have picked up one of the stomach bugs floating around and haven't seen him since Tuesday - didn't want to risk the health of...
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    Thank you everyone. Ellie, the full face mask he...

    Thank you everyone. Ellie, the full face mask he has is slightly different to the one you have. I am going to ask our vent nurse if she thinks it is worth me buying one like yours. It sounds just...
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    Good morning everyone, sorry I went quiet but I...

    Good morning everyone, sorry I went quiet but I fell asleep in my chair.

    Ellie, I feel it may be Douglas' face which is the problem, if that makes sense. He has tried every single mask going, I...
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    Hello, Dina & Ellie Doug is taking a kinder view...

    Hello, Dina & Ellie
    Doug is taking a kinder view of Wythenshawe now. His vent nurse is Nicky, who is absolutely lovely and has done a lot to try and keep him steady. The problem isn't really the...
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    Douglas in hospice

    Hello, everyone
    Looking for reassurance really. Doug was still having problems with his ventilation so there was a small meeting at our home consisting of the hospice doctor, his vent nurse and his...
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    Thank you, Ellie and Dina Ellie - I took her...

    Thank you, Ellie and Dina

    Ellie - I took her to mean that Douglas would not be able to operate the chair. He can still move his arms but has no real strength in them now and his hands are curled...
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    Hi, Dina I did think about ringing the MNDA -...

    Hi, Dina
    I did think about ringing the MNDA - especially when I found there is a version of the Salsa Mini which they helped design for sufferers of the disease.
    Is your chair powered? What will...
  13. Replies
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    Not able to have powered wheelchair?

    Good morning, everyone.

    After MANY months of waiting, Doug's wheelchair arrived this morning. Unfortunately it is a manual and we were expecting a powered chair.

    I rang the OT immediately and...
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    Thank you, everyone. It had occurred to me that...

    Thank you, everyone. It had occurred to me that we are new bods and shouldn't really expect to be accommodated over more long standing clients. Also the irony that I used to think the previous team...
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    Carers arrival time

    Good morning, everyone
    Don't know if this is the right place for this but I am trying to find out what is a reasonable time in the morning for the first visit by a team of carers.

    Our original...
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    Thank you, Barry

    Thank you, Barry
  17. Replies
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    Thank you, Ellie, that is the sort of thing I was...

    Thank you, Ellie, that is the sort of thing I was hoping to find.
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    Thank you, Terry and Dina😃 I had considered a...

    Thank you, Terry and Dina😃

    I had considered a door bell (we use one in work to summon people from the far end of the library and it works very well) but I don't know if Douglas would be able to...
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    Easy push bell/buzzer?

    Good evening, everyone. Douglas lost his ability to speak in the early stages of this horrible illness. During the day he communicates using his iPad or an alphabet sheet. When he has needed me at...
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    Apollo is lovely, a real character. 😃

    Apollo is lovely, a real character. 😃
  21. Replies
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    Fantastic news, Dina

    Fantastic news, Dina
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    I hope their intervention does help, Dina. It is...

    I hope their intervention does help, Dina. It is truly awful how you have been treated.
    Chrissie xx
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    So sorry for your loss

    So sorry for your loss
  24. Replies
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    chrissie here

    Hi, everyone
    I am Douglas' wife/carer (although it appears not a particularly great example of the latter😮). Douglas came back into Wythenshawe hospital on Friday evening - his CO2 readings were...
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    Thank you for your replies, everyone. I fear part...

    Thank you for your replies, everyone. I fear part of the problem is that even although Douglas was diagnosed in October I was/am still somewhat in denial, mad as that must seem, and Fridays meeting...
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