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Thread: Ventilation

  1. #101
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    Glad it went well for you Dina x

  2. #102
    Forum Member nunhead_man's Avatar
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    Jul 2017
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    Good afternoon Dina

    Just popping in to add my 2 pennies worth to say great and hope you are now beginning to feel stronger and better?

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  3. #103
    Forum Member Terry's Avatar
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    Hi Dina;

    Hope you're OK and not in pain.

    Love Terry

  4. #104
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Dina,

    Take whatever pain meds you need to keep pain-free - you'll heal quicker if you're not tensing your tummy muscles in pain. (I still remember that sneezing was uncomfortable!)

    Thinking of you,

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

  5. #105
    Forum Member Gillette's Avatar
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    Hi Andy, Terry and Ellie,

    Thanks for your messages. I don't really have any pain, just some discomfort - mainly when I am being turned over in bed. I have been taking painkillers when i've needed them.
    Dina


    Trying to keep positive, but not always managing.

  6. #106
    Forum Member Terry's Avatar
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    Hi Dina ;

    Good to hear from you and that you're not in pain.

    Stay strong, love terry

  7. #107
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    Good to hear from you Dina. And you are doing ok.
    Love Sheila

  8. #108
    Forum Member Gillette's Avatar
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    Hi Everyone,

    I thought I would post an update about what is happening with me.

    I am still in Wythenshawe Hospital and it's looking as though I will be here for at least a couple more weeks. There was supposed to be a big discharge planning meeting on Friday of last week at 10:30. At 10:15 Bury Social Services rang to say the social worker was ill. The consultant on the ward was not happy. We went ahead with a smaller meeting so that we could start thinking about what care needs I have. Unfortunately the MND has been carrying on regardless and I have lost the ability to do quite a few things. Consequently, my care needs are much higher now. At the same time, my partner is less able to cope with my care needs so I need to ensure that his role is really just what carers and district nurses don't do.

    Despite the above, my real problem is that I am struggling to come to terms with how little I can do. I have already gone way past the point that I had felt would be tolerable and I am finding that my thoughts are becoming very dark.

    In case anyone hadn't realised, MND is s**t.
    Dina


    Trying to keep positive, but not always managing.

  9. #109
    Forum Member Terry's Avatar
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    Hi Dina;

    It is understandable that your thoughts are very dark. I/we, just hope that things are sorted out for you and the progression lays dormant for a while.

    Hugs Terry

  10. #110
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Dina. Sorry about your degeneration. I hope that you get very good carers for home before you're discharged. Lynne x
    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.

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