Danijela
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  • Dani, I just wanted you to know that I'm thinking about you and your family. I hope all is well.
    Hi Dani,

    You are doing what many cannot even imagine themselves coping with. I just wanted to send you and your boys my love, and let you know that I'm thinking about you. ♥
    Hi Dani, thanks for stopping by to say hi and check on me. I am not on so often now. I got into an impasse for a while in my grieving and don't quite know how best to be on here or how to continue to contribute to those living with mnd....beginning to come out of that now, I think. How are things going for you and L?
    Hi Dani - your bed set up sounded really good - does everything have to be set up to miniscule precision - I reckon if im a millimetre out on positioning, Mark knows the difference. No hoist landing ever seems the same either - Mark is in bed 24/7 now and positioning is bit of a nightmare.

    Hope all ok with you.
    That is all you can do is your best, I can't imagine all you do and with a little one too. Girl I so admire you and am sending you strenght and Hugs!!
    Hi Dani
    We went to Bolton Hospice for a look, because we had a power cut a few weeks ago for over 5 hours and almost used up all our battery power, Hospice have said if that ever occurs again then we can go there to use their facilities, it was scary until it happens you don't realise how much electricity really matters and what you need to use to live, especially the cough assist, Lift etc, had to do manual vibration for an hour very tiring. At present he will not entertain any other carers what so ever, so will not go in Hospice to give me a break, he knows himself how difficult it is for us both, but i can't force him can I. His Peg was fitted about twelve months ago he was having feeds once a day but was having a lot of bowels issues so now refuses feed all together. Life is tough but I suppose it could be worse. How are you coping Dani I often wonder how hard it must be with Stan to take care of too, really I have it easy in comparison. lovely hearing from you . xx Ang
    Hi Dani
    Not the best having a rough ride like yourself by the sounds, he still won't have carers or respite, although after a lot of persuasion and anxiety got him to go look at the Hospice yesterday, but not sure what I really acheived. Still trying to hold down a 30 hour a week job too and it is all grating on the pair of us, we have consistantly being rowing lately, all he can move now is his head and neck. and some slight finger movement. Has been on vent 24/7 since his peg but getting a lot of mucus and refusing peg feed as still able to swallow mushy food, struggling with tablets so in the process of trying to get them changed over to be put through his peg but a bit of a nightmare. How is L doing, you sound as though your having it rough too. Think of you all the time xx Ang
    Hey Dani, thanks for thinking of me, it is sure a ruff road, I would not wish any of this on my worst enemy.. How is your little boy? I bet he is getting big..
    Hi Dani, I haven't been able to face coming here as much as in the past but I think of L and yourself and wonder how you're doing. I don't forget you.
    Hi Dani, I haven't been on in a while. How are you getting on? How's L & S ...... And you?
    Hi Dani
    Just checking in on you all hope your all coping with the new carers etc, and bet Stanley has you running around now too,just wanted you to know thinking of you all xx Ang
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