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Thread: Dad diagnosed last week.

  1. #1
    Forum Member
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    Oct 2018

    Dad diagnosed last week.


    I'm not really sure what I'm looking for here, I guess just to know I'm not alone in this.

    My dad was diagnosed with MND last week and it's come as a real shock. He's in his early fifties and it just seems very unfair. I live at home with him, mum and two younger siblings.

    I'm just wondering how others have coped? Did you find talking about it openly helped or are there other coping mechanisms that have been useful? I want to be there for him and mum as much as possible but right now I'm struggling to come to terms with it myself.

    Any advice greatly appreciated.


  2. #2
    Forum Member Ellie's Avatar
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    Oct 2012
    Hi Lo3,

    Sorry to hear of your Dadís diagnosis.

    It takes time to get your head around things and people all cope differently.

    IDK how old your siblings are, but, as the eldest, do they look to you for guidance?

    Personally, I preffered if people spoke openly to me about it, but your dad may not...

    Weíll help you any way we can - please feel free to ask questions.

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

  3. #3
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    Jul 2018
    so sorry lololo . my husband who turned 59 last week was diagnosed july. I find it difficult, our girls are 25 n 30. I feel for you.

  4. #4
    Forum Member Lynne K's Avatar
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    Nov 2017
    Hi Lolo..
    I'm sorry about your dad's diagnosis. Ellie is right that it takes a while to come to terms with this. It knocks everybody (including the person diagnosed and loved ones around them) for six in the beginning. But we all come to terms with it in our own way. Tears at the beginning will lesson but the occasional meltdown is a normal occurrence. What seems like a little thing can hit a nerve; a fall, or nothing obvious at all. Everybody needs to talk at some point, but it's best not to force it. Here is a good place to start. Say whatever you need to and ask questions as they arise. You'll always find a kind word here and frequently useful information and/or suggestions.

    If you are the oldest sibling then maybe you will carry a lot of the family strain between supporting your dad, your mum and your siblings. Don't forget to look after yourself too. Take care. Lynne
    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.

  5. #5
    Forum Member Marigold's Avatar
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    May 2018
    Hi Lololo
    Welcome to the forum.
    I can only speak as a parent but I am 52 and was diagnosed in May. My children are 25,23 and 20.
    I can’t tell you how painful it was to share my news with them. They have all taken it so differently yet all so well.
    Now the immediate shock has passed, we have all become closer as a family. Each have found their own way of supporting me and ways to talk about it.
    Every family is different but it’s possible that your Dad may appreciate those conversations.
    Even in 6 months, we as a family, have become much more confident with those tricky emotional chats. We spent those early days 'pussyfooting around' it all. Now we can all laugh madly when one of them is trying to lift/shuffle or hoick me around and maybe makes a mess of it!
    It will get easier, I promise!
    Good luck
    Last edited by Marigold; 10th October 2018 at 16:54.

  6. #6
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    Dec 2017
    Hi Lololo Welcome to the forum .
    There is no easy way I'm afraid and as the others have said everybody handles things differently . I personally am very open about everything but I have to be careful what I say to my family as they get very upset . My friend who's husband had MND would never talk about it to anyone and just buried his head in the sand, although I think he was trying to protect his family

    You will eventually find a way to come to terms with it . We went to the local hospice to family counselling and that helped everyone .You will have days of crying but they will get less but it helps to cry even a while after . Don't try and carry the burden yourself talk to your mum and dad . Look after yourself and remember you are never alone now you have joined the forum.

    Love Chris

  7. #7
    Forum Member Sueb's Avatar
    Join Date
    Aug 2014
    Hi Lololo
    Welcome to the forum.
    I care for my husband. It was difficult to get the diagnosis and it took a while to get to grips with it. Steve didn’t want everyone at work to know but told a few close people, he didn’t want people to feel sorry for him and wanted to carry for has long has he could. It took him about 6months to come to terms with talking openly about it. Once we started going to our local MND group he was able to talk to anyone about things. Our family support us with practical help and help has much as possible, it’s not easy for them but they see how positive he is and it helps to take his lead.

  8. #8
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    May 2018
    Hi Lololo, I am sorry about your Dads diagnosis but welcome to the forum.There is always someone to chat to on here so hopefully you won't feel so alone.

    The diagnosis is such a bombshell but it is lovely that you want to find ways to help your Dad and your family. Make sure you look after yourself too !

    I guess everyone reacts and copes in different ways. Initially I didnt want everyone to know because I needed to come to terms with it ... maybe a little bit of denial. Now I just want to be open and as a family we are able to talk and even laugh about things .

    I hope you have some support in the early days .
    Love Debbie

  9. #9
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    Oct 2018
    Wow, thank you so much for the support everyone. I really wasn't expecting it.

    I'm 25 and my sister and brother are 23 and 20. I think they do look to me quite a bit. I guess it is still very early days and when it sinks in some more we will find our own ways of coping. It's really nice to know that there are others in similar places and this seems like a great place for everyone to support one another.

    Thank you again, I'm sure I will be back with more questions! Lots of love to everyone in this forum, I hope I can return the favour of supporting you all too!


  10. #10
    Forum Member Barry52's Avatar
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    Mar 2012
    Newark on Trent
    Hello and welcome to the forum Lololo.

    As a parent living with MND the most difficult conversations are with your children. I have 3 children and it was heartbreaking to break the news but as others have said it brings you closer as a family unit. You of course are on the other side of the coin and as an elder sibling of 3 I know how that feels when it comes to shouldering responsibilities.

    Conversations about coping with the disease can sometimes be comical and my daughters get a freebie when they come to a concert as my “carer”.

    Myself and a few of my MND friends are in discussion with MNDA about setting up a closed web group so that young family members (not children) living at home with a parent who has MND can share their feelings and experiences with like minded people. We know that it can be difficult to express emotions with a parent or a friend who has no idea of the impact of MND but we think this idea may work.

    Best wishes,
    Iím going to do this even if it kills me!

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