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DAD - MND diagnosed now. What next?

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  • Bowler
    replied
    richard Well said Sir

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  • richard
    replied
    Positive vibes Thank you, you have been an inspiration. May I be bold and say on behalf of those on this forum we send our love to you and all your family. Take care and stay safe.

    Richard

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  • Positive vibes
    replied
    So this will probably be my last post, maybe I will be back when things are less raw, who knows?

    I just want to take the time to thank everyone who has helped and supported me through an incredibly stressful time (for all sorts of reasons), and I have tried to let everyone know what happened to my Dad, in the hopes it helps other people with this (insert expletive here) disease now or in the future.

    He was incredibly brave, accepted it, and in his words 'just got on with it'. For him, it was doing the usual things he did, for as long as possible, in his normal routine. He resisted all forms of help/equipment, but eventually I got him to try things, using the stock phrase 'just try it and if it doesn't work at least you know and can get rid of it'.

    Sometimes that worked, e.g. he loved the comfort of the rise and recline chair, sometimes it didn't e.g. NIV. But he gave everything a go...

    Incredible man, he even insisted on making sure I got all his equipment returned when he was in LOROS so it wasn't languishing at home gathering dust, and could help someone else instead. Just as he went back to them, someone in need who was the right height did indeed gratefully receive the R&R, and that put a big smile on his face.

    The MND team and LOROS and a host of other folk were fantastic in their support, so many doors were opened for Dad, so a huge thank you to them too. But the folk on here are really special, they are living with this, or their nearest and dearest are supporting them through this. Thank you to all of you 'at the coalface' living every day yet still being positive and helping the rest of us tackle what happens.... what an amazing bunch of people you are, love, hugs and yet more thanks.

    You certainly are kicking the butt of MND every single day... xxx

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  • Positive vibes
    replied
    Originally posted by Deb View Post
    Positive vibes . I am sorry to hear of the loss of your darling dad.

    You are a wonderful daughter and I hope, in time, the precious love you shared will bring you comfort.

    Love and hugs to you and your family,
    Debbie xx
    Deb

    Thank you... xx

    We all tried to think of the happiest, silliest memories we had to make his last days as happy as possible...

    Love and hugs to you and all your loved ones, hold them tight... xxx

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  • Positive vibes
    replied
    Originally posted by Bowler View Post
    Positive vibes my heartfelt condolences to all the family. You are a remarkable lady who’s love for your dad did indeed shine through. That hand squeeze is a very special moment to be treasured along with all the many wonderful memories you have of a very special dad.
    Bowler

    Thank you... x

    He even made us laugh towards the end when Mum was talking about demolishing a shed in the garden, I got a definite hand squeeze, and said, 'Is that a no then Dad?' and another squeeze, he'd built it a bit Heath Robinson style, and Mum wasn't quite happy with it, but its still there....! Bless him... x

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  • Positive vibes
    replied
    Originally posted by LindaB View Post
    Positive vibes so sorry for your loss 🙏
    LindaB

    Thank you x

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  • Positive vibes
    replied
    Originally posted by Mary C View Post
    Sincere condolences..I kept looking on here for your updates.The love you have for your dad shined through in all your posts.May he rest in peace.
    Mary x
    Mary C

    Thank you, I love him to bits, and it is starting to hit me now.... xxx

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  • Positive vibes
    replied
    Originally posted by Ellie View Post
    Positive vibes So sorry for your loss.

    Heartfelt condolences to you, your mum and your brother.

    Your dad was truly, truly blessed to have had you fighting for him every step of the way. Your unconditional love for him shone through with every word you wrote about him.

    Wishing you much strength during this difficult time.

    RIP Dad.

    Love Ellie.
    Ellie

    Thank you, and thank you again for all your incredible support and advice, it was invaluable.

    Poor Dad got a chest infection in the end, despite all the precautions, PPE, etc., and he was always refusing his nebuliser, LVR bag, and latterly, the NIV. I think if only I had nagged him more, 'maybe' he would still be fighting on. But to see him able to do so little, not communicate (he also refused iPad or any electronic means to communicate), was incredibly difficult for all of us. I felt he was still Dad, he was still 'in there' but his body was failing him... now he doesn't have to fight any more... my poor old Dad... xxx

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  • Positive vibes
    replied
    Originally posted by richard View Post
    I send my utmost love to you and your family. Your father was wonderful and has rasied an incredlby remarkable daughter X.

    Richard
    richard

    Thank you, it was nice chatting to you, however briefly, although I hardly deserve praise - this is my Dad and I would do everything I could for him, and do it again in a heartbeat... still feel I could have done much more x

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  • Positive vibes
    replied
    Originally posted by Lynne K View Post
    Rest in peace dad of PV, and love to you PV with a big hug xx
    Lynne K

    Thank you, love and hugs to you and yours too xx

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  • Positive vibes
    replied
    Originally posted by matthew55 View Post
    He is at peace. I know your pain and my heart goes out to you. RIP Dad. 🙏xx
    matthew55

    I did a lot of my grieving whilst he was still with us, then when he was at LOROS, in the end it was so sad, but a relief that he wasn't suffering any longer, thank you xx

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  • Deb
    replied
    Positive vibes . I am sorry to hear of the loss of your darling dad.

    You are a wonderful daughter and I hope, in time, the precious love you shared will bring you comfort.

    Love and hugs to you and your family,
    Debbie xx

    Leave a comment:


  • Bowler
    replied
    Positive vibes my heartfelt condolences to all the family. You are a remarkable lady who’s love for your dad did indeed shine through. That hand squeeze is a very special moment to be treasured along with all the many wonderful memories you have of a very special dad.

    Leave a comment:


  • LindaB
    replied
    Positive vibes so sorry for your loss 🙏

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  • Mary C
    replied
    Sincere condolences..I kept looking on here for your updates.The love you have for your dad shined through in all your posts.May he rest in peace.
    Mary x

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