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Thread: Fed up

  1. #31
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    Feb 2019
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    Yes I hope all went well. Beautiful day here.
    Love Sheila.

  2. #32
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    Hi Pink and new mother in law!

    I've been thinking about you all day. I really hope it went well and you got a good stream.

    Love and hugs,
    Debbie x

  3. #33
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Pink and Andy. Sorry that you have both missed your sons weddings. Andy your ideas sound great. I'm glad that you got to share some of the day because of our wonderful technology. Pink, I hope that your chest and breathing is much better and that you get CHC. Sorry for my very late post. I hope that somehow or other Pink that your depression cloud passes over like a cloud with sun behind it. Love Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #34
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    Hi Pink, hope the day went well for them and you got to see the ceremony x

  5. #35
    Forum Member Pinkelle's Avatar
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    The link worked well, and one of Deans friends sent me videos of the speeches and the First dance. So I've been watching them over and over! Still in hospice. Feeling a a bit better. Im very anxious about leaving the nippy off!! Stupid because up until now i was only having it on at night! Think its become a comfort blanket. Left it off twice yesterday an hour each time.

  6. #36
    Forum Member Kayleigh's Avatar
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    I'm so glad the link worked well for you Pink. It's great that there are videos of the day to enjoy watching as well.

    I hope the happy couple are enjoying married life - and perhaps you will become a Grandma soon???

    Sorry I can't advise about the Nippy, but if it's helping you to breathe more comfortably then perhaps it's no problem if we use it as much as we want to? Is the Nippy mask comfortable to wear? - I have read that sometimes they can get a bit uncomfortable if worn for long periods of time.

    Hopefully you are being looked after very well at the hospice and you will be well enough to return home very soon - but, of course, important that you are not rushed into going home until the adequate provision of carers have been put in place for you. Hopefully you will hear about your application for CHC soon, if you havn't done so already.

    Sending you lots of love and hugs,
    Kayleigh xx
    Last edited by Kayleigh; 21st April 2019 at 13:03.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #37
    Forum Member Ellie's Avatar
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    Lovely to hear from you Pink Thanks for posting, I'm sure it takes a lot of effort.

    I am so happy the link worked and you got to see Dean being married.

    There's absolutely nothing wrong with using the Nippy as a comfy blanket - if it makes you feel better and gives you a bit more pep, then why not do it...

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #38
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    I am pleased you enjoyed watching the videos of your son's wedding! I hope you are feeling better. I hope you can return home shortly!!

    Love from
    Sheila xx

  9. #39
    Forum Member Pinkelle's Avatar
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    Feb 2017
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    Weymouth
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    I'll be glad to get home. The nurses in here are lovely but i do feel like a piece of meat at times. I realise since being in here I will need full time care especially when mick is at work. Any advice?

  10. #40
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    May 2018
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    Lovely to hear from you Pink and thank you for the update.

    I've been thinking about you and I am so pleased that you got a good link to your boy's wedding and that you have a great video.
    I can really understand how you want to keep watching.

    I really hope you get home soon. I have no experience yet of accessing home care but it seems so unfair that you have to fight and then wait for it.

    Love and hugs,
    Debbie x

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