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Jo here from Pinner

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    Jo here from Pinner

    My wife got the diagnosis on Monday (15th) obviously devastated - we need all the support we can get

    #2
    Welcome to the forum Jo. Sorry about the diagnosis. Lots of friendly and helpful people here to help you cope.
    Each day is made easier with a bit of humour.

    Comment


      #3
      Hi Jo
      I am sorry that you have a need for the forum but welcome x You must both be shellshocked but you will find lots of help and support here from people who have walked in your shoes

      Take each day at a time and find out what you need to but don't google and frighten yourselves.

      much love
      Sarah x

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        #4
        Sorry about the diagnosis.
        Welcome to the place where you can ask anything and there will be someone who will offer advice. You can also let off steam, share your experiences and even have a bit of a laugh, although laughing is probably the last thing on your minds just now.

        Just know people understand and care

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          #5
          A warm welcome to you, Jo from Pinner, and to your wife too.

          These early days are very tough, an emotional rollercoaster, but it does get easier.

          Look after yourself too, it's not all about the person with the MND!

          We're here for you both.

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

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            #6
            Hi Jo, A warm welcome to the forum from me,

            I'm so sorry for your wife's diagnosis... Its such a shock isn't it and I found all the advice overwhelming.

            The forum is a good place for friendship and support from people who really understand. There is always someone to answer a question, whether it is practical or emotional.

            Take care of yourself too,
            Love Debbie x

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              #7
              Thank you everyone, yes its very hard at the moment, lots of tears. Our kids are 7 and 5 so need to be strong in front of them

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                #8
                Hey Jo, welcome to our very exclusive club. Here we deal with life with love and laughter. The first rule is 'We always talk about it'. 😁x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Greetings Jo. Here you can ask anything, shout scream, laugh and cry. We have all done it and here we support each other. Never be afraid to ask or post anything here. We or our family are all on the same journey and support each other enormously

                  Richard
                  Richard

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                    #10
                    Hello Jo,
                    These first couple of months are overwhelming, it’s normal, we’ve all been there, it will get it easier , not nice but easier, hang on in there
                    As long as there’s golf and beer I’m happy

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                      #11
                      Welcome to you both Jo. I remember the time of tears shared with family and friends so if you’re feeling down come on here for support.
                      I’m going to do this even if it kills me!

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                        #12
                        Hello Jo

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                          #13
                          Hi Jo, so sorry about your wife’s diagnosis. It must be difficult for you both at the moment. I guess that another worrying thing is how to explain MND to your children. There’s age specific booklets available for children from the MND Association that would likely make this easier. If you get in touch with MND Connect
                          they can advise how to broach the subject and explain which publications are currently available.

                          Look after yourself, Lynne
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            Hi jo
                            welcome both of you. I think everyone has said what I was going to say.
                            love and hugs from Denise xxx
                            when i can think of something profound i will update this.

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                              #15
                              Welcome Jo,

                              Sorry for the news. Rant whenever- we all do
                              x

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