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    Hello!

    Hello everyone
    My husband was diagnosed with ALS last October and won’t talk about it with me at all. I retired as a nurse 2 yrs ago and find this avoidance hard. Is this something others experienced when diagnosed? So happy to be here with you all

    #2
    Hi pattyloo
    funny I was just talking to someone else about this. My husband was diagnosed summer 2019. He's has hardly said a word about it. He either keeps his thoughts to himself or he just takes each day as it comes. I'm not sure. Sometimes I wish he did want to talk about it but then it's such a horrible subject. I don't think we're alone as I know others have said the same.
    welcome to the forum. Lots of lovely people on here who will help you with all kinds of different things. We laugh and cry and do our best to support each other.
    Denise xxx

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      #3
      Thank Denise x

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        #4
        Welcome to the Forum, Pattyloo.

        Quite a few people with ALS adopt a head in the sand/denial stance regarding their diagnosis - it's how they cope and there is no right way nor wrong way of coping, it can be so difficult to come to terms with what's in store. Of course this is very hard on the partners & families, who are going through their own turmoil too.

        I'm guessing he wouldn't talk to a counsellor 🤔 He might get a lot out of it. And you, have you anyone to talk to? If he were linked into his local hospice, both of you could get support (albeit limited or by phone/video call at the mo)

        Big hug to you, Patty.

        Love Ellie.
        ​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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          #5
          Hi Pattyloo and it’s a welcome from me too. It’s only been a few months since diagnosis and there will be sooo many thoughts filling every waking hour for both of you. Loads of lovely and diverse friends on the forum who you can lean on when you feel the need.
          My own experience at the beginning was Ann ( my wife ) kept saying she “ just wanted to wake up from this nightmare “. All I could do was keep reassuring her that whatever happens we were in it together. Once she had sorted her own head out discussions did take place. I found the brilliant hospice nurses helped through their experience of asking the really awkward questions to both of us that we can sometimes shy away from.

          Ask your new friends here anything, have a rant or even a laugh. 😉

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            #6
            Thank you x

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              #7
              Welcome to the ride of the dammed but at least the company is amazing. 😁x

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                #8
                Welcome from me also Pattyloo . We're good at listening. If like me you like to talk problems through it can be frustrating if a partner or relative doesn't want to, but that's just their way of dealing with it. Ask anything you want, no matter how trivial.
                Each day is made easier with a bit of humour.

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                  #9
                  Pattyloo A warm welcome from me. It is recent since your husband had the diagnosis and he may be trying to process how to deal with it. Try to encourage engagement with our forum family as a way of coping and he may see what others recommend because we all have different experiences.
                  I’m going to do this even if it kills me!

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                    #10
                    Welcome to the forum Pattyloo x
                    Janette x

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                      #11
                      Hi Pattyloo, my husband doesn't have a definitive diagnosis as yet, so I keep telling myself that's why he hardly mentions it - he's living in hope that it's all been rather a big mistake - even after nearly two years he still clings to the hope he doesn't have this dreaded disease,

                      I doubt he would come on this site as that would mean him admitting he has the disease, so I'm just left on here by myself.............I relay all kinds of stuff that gets mentioned on this site, in one out the other,

                      You are not alone

                      Sue

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                        #12
                        Having been at Christies I now realise that I am lucky to have MND instead of terminal cancer,; at least I know I will die peacefully in my sleep. Be careful what you wish for. 🙂x

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                          #13
                          Hello Pattyloo x

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                            #14
                            Welcome to our comunity forum

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                              #15
                              Hi Pattylou. Welcome to the group no one wanted to join. You can ask anything here, shout, scream, laugh, cry. We have all done it and you will be supported.

                              When I was diagnosed my wife and I talked about it a lot but didn’t want to talk to anyone else about it for a long time.Your husband is not alone and it’s very hard to accept that all your dreams and plans may never come to fruition. The thoughts of how your family will cope when you have gone are frequently in MNDers minds. It’s a horrible illness which makes you a physical wreck but still mentally astute.

                              Perhaps a simple question like When this lockdown is over where shall we go for a weekend? may start a discussion. The how will we get there, the practicalities etc.

                              Your husband may feel he has let you down and he will be a burden etc. I am sure you have said repeatedly that you will be with your husband and support him throughout this horrible disease. I feel I am a burden on my wife but she assures me, rubbish!, she says to me that I am not.

                              There are local MNDA members who will visit and there are group meetings. I never wanted to go to these and didn’t. However I joined about 6-8 months ago, we meet on Zoom and I thoroughly enjoy it. You can share issues and problems with fellow sufferers and its helpful.

                              I wish you well. Take care.

                              Richard
                              Richard

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