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Thread: Eventually...!

  1. #1
    Yellow Feathers


    Rather selfishly I have been an outsider reading all your wonderful helpful posts since January this year. And I canít thank you all enough for the strength I have gained from everyone.
    After various tests at the start of the year I suppose I was lucky to be diagnosed quickly by the April. Still lucky so far as it is just my right hand that is bent....
    Having fantastic support through gp and hospice and couldnít ask for more!
    Just turned 46, with three handsome boys and an equally handsome husband!!(thought Iíd better add that!)
    My issue so far is that I just havenít been able to use the mnd label with my kids...they know Iím ill and will get worse but at the moment all they see is the usual me...:
    Life is a challenge!xx

  2. #2
    hi yF your right life is a challenge no more so than life with mnd . it makes you appreciate the life you've had and the time we have left and even though i've always appreciated the small things in life like birdsong , rainbows and sunsets i appreciate them even more now . sorry about your diagnosis hope you have a slow developing type . as for telling the kids i suppose it's a personal thing , i didn't tell mine until they noticed something was wrong , it was one of the hardest things i've ever had to do telling them and the rest of the family . good luck Andrew

  3. #3
    Forum Member Pinkelle's Avatar
    Join Date
    Feb 2017
    Hi yellow feathers and welcome. It is the hardest thing telling your children. I have two sons 26 and 30. I don't know how old your boys are but mine have been amazing. The youngest one took a while to accept it and this was demonstrated by not wanting to be near me for a while. They all cope in different ways. It's tough but it sounds like you are a close family and you will help each other through it xx)

  4. #4
    Hi Yellow Feathers
    i told my kids 28 + 25 by phone , 1 was away for work the other at Uni .
    i felt pressured to by my OH as he wanted them to know first before the rest of the family as they were constantly asking whats wrong what did the doctors say.
    i guess no time is the right time.
    every morning the 28 year old (back at home) will now say goodbye before work and i get a hug (most unusual ! hes like his mum lol)
    the 25 year old is a bit more senitive.
    anyway just do what feels right for YOU.
    love and budgie hugs.

  5. #5
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hello and welcome YF,

    That’s a long time to lurk in the shadows but I’m pleased you have surfaced. There is information on the MNDA website about understanding the disease for children but it is aimed at school age.

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

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Better late than never YF!! And a warm welcome to you and your devilishly handsome family

    Given you have (thankfully) very slow progression, you've time too formulate how, what & when to tell the boys in an age appropriate way.

    BUT, whatever their ages, they should hear the news from you & dad, not in the playground or through the grapevine...

    My own experience is that kids of all ages handle the situation better than adults, are resilient and rational and will pick up on any pretence that everything is ok!

    It's good you have great support.

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

  7. #7
    Forum Member
    Join Date
    May 2017
    Jarrow, Tyne and Wear
    Hi Yellow Feathers and welcome to the forum.

    It's great that you have super support from the GP and the Hospice.
    Having a loving family is another great advantage.

    We told our sons and daughter as soon as I was diagnosed. I didn't want them hearing from anyone else - whether it be gossip or social media!

    I'm sure you'll figure out the best way to tell them. You're right - life is a challenge!

    Take care,

    Bern x

  8. #8
    Forum Member
    Join Date
    Nov 2017
    My daughters children are 8 and 7 months the oldest one knows Mum has a bad leg that won't get better and may get worse, they plan on telling her more in the new year in case she hears something at school, they will use the help of councellors, it's horrendous!

  9. #9
    Welcome YF

    You will find a lot of support, advice, comfort, and friendship from the wonderful members of this forum, Wishing you, and your family all the best.


  10. #10
    Hi Jaxx You know really at that age I wouldn't overwhelm an eight year old. You cannot cover the subject in depth, so maybe 'trickling' the main points might be a good option instead of a birds and bees session with a stranger. Just a suggestion. Dude x

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