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    hi everyone

    My name is Stephanie the love of my life was diagnosed with MND last wednesday.
    our life has fallen apart and not sure what to do.

    #2
    So sorry for u both it’s horrendous the first few months but u will get lots of help and love on here 👍 Keep strong and u are not alone x

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      #3
      thankyou for replying,hes only 52 and were soulmates and its devastating.
      weve 2 daughters and 3 grandchildren.
      how were going to tell them i dont know.

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        #4
        Hi stephanie

        I'm so sorry to hear your news. I know its devastating. Try one day at a time it seems to be the best coping mechanism. My husband has mnd and ftd and I've been his carer for quite sometime.

        There's some lovely people here to laugh and cry with. You will never be alone.

        Lots of love to you and your family.
        Denise xxx
        when i can think of something profound i will update this.

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          #5
          Thankyou so much x

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            #6
            Hi Stephanie so sorry to hear your news. As others have said it is a bewildering time. So many emotions, so much to understand. Take your time, don’t rush into anything just now. When you are ready there is some useful info on the Association webpage on helping with telling children.

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              #7
              Hi Stephanie, you’re very welcome here. The early days are awful, I know. But it does get better I promise you. Take your time. Life doesn’t end with a diagnosis of MND, it just carries on in a rather different and totally unexpected way. We still have great times with the family, including our young grandchildren. They understand and we all accept the future. You’ll get to that place too, I’m sure. Best wishes
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                #8
                Thankyou for the replies it helps were not alone but it feels truly unbearable at minute

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                  #9
                  Hi Stephanie. So sorry to hear your news. I felt exactly the same when i was diagnosed 2 years ago. But I’m still here and still enjoying life. Best wishes to you

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                    #10
                    Thankyou x

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                      #11
                      Hi Stephanie. These first few weeks are tough for sure. All I can advise is you take time for the shock to subside. Hopefully the mnd nurse will arrange a home visit and explain it more.

                      Then once you feel a little stronger you could break the news.

                      Please ask us for help as we all know what you are going through. Xxx
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        Stephanie,

                        So sorry to hear this. It is dreadful news but it does ease a bit with time and support.

                        As Shelley says we are here for you to ask any questions x
                        Diagnosed 3rd November 2021 Bulbar Onset

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                          #13
                          Thankyou all so much for replying .
                          I wish all of us all the luck in the world . x

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                            #14
                            jamie welcome to the forum.

                            Once the initial shock starts to subside....the practicalities of a new way of life seems to kick in.

                            Lots of advice & support here....take what you need💙😘
                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                              #15
                              jamie A warm welcome to the forum Stephanie.

                              It's completely normal to feel shellshocked when the love of your life receives such a diagnosis, it does lessen with time and support, and that support should start to kick in soon.

                              If and when you feel up to it, perhaps you can tell us your husband's current symptoms.

                              Love Ellie xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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