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is it better to know or not

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    is it better to know or not

    My husband started with symptoms in March 18. He was diagnosed with MND on 17 Jan 19 but the neurologist didn't tell him. She referred him back to the Neuro Surgeon and said it is because the Neuro Surgeon referred him to her.
    Is it better to postpone the news or not. I'm so scared he will deteriorate faster once he knows. But it is also difficult for me to hide the fact that I've been crying. Advise will be so welcome. Alet

    Hi Alet

    I think only you can answer that question.

    If it was me I would be quite upset that such information was not directed to me on a "does he take sugar" basis.

    In case the reference is strange to you what I mean is somebody asks a third person whether I take sugar even though I'm sitting there perfectly capable of answering the question myself although it looks to the asker as though I'm not for whatever reason.

    Given you are in control of this I think you should consider what reaction your husband might have to being told and what support you need to have in place when you do.

    I know some people go into denial when diagnosed and this can have a seriously bad influence on their survival and quality of life so if you think this will be the case then obviously you need slightly different support than if you think you will be openly accepting of it although quite understandably some variety of very upset

    Please keep in touch with us whatever you do

    Best wishes



    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"


      Hi Alet and welcome.

      Sorry to hear about your husband.

      Who told you of his diagnosis - his Neurologist?

      It is sad to hear of a patient being treated like that! People shouldn't be kept in the dark IMO - why do you know but not him?

      It's burdensome on you, surely? What country are you in?

      Love Ellie.
      Last edited by Ellie; 18 January 2019, 14:17.
      ​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


        Hello Alet and welcome,

        I am sorry to hear of your husband's diagnosis. It must be extremely upsetting for you, not only to deal with the shock of your husband's diagnosis, but also to have the dilemma of whether to tell him or not.

        In a way, it's unfair on you that you've been put in this situation by the person who decided to tell you but not your husband. I would have thought your husband would have the right to be informed as soon as possible about a diagnosis that is affecting his health - and perhaps he should have been told by the medical professional (if that is who it was) who told you. However, this is just my opinion, and I feel for you having to cope with everything without your husband knowing what is going on.

        Hopefully, you can consider telephoning the MND Association (or similar) for support and advice. If you don't live in the UK, hopefully there is an association, similar to the MND Association, in the country where you live - so that you can find out what local support and help is available for you and your husband.

        Best wishes,
        Last edited by Kayleigh; 18 January 2019, 18:23.


          Hi Alet and welcome.

          You're in such a tricky situation and it's doesn't seem fair to burden you with the decision.
          It's very personal, I know, but I always want to be informed about everything because it's the only way I can feel in control. The diagnosis is a huge shock but once I knew why I couldn't walk I stopped trying to (and having very bad falls ) . It meant I had the freedom to use a wheelchair without wondering why.

          Everyone is different and you will know best how your husband might cope with the diagnosis.

          Take care and keep in touch.
          Love Debbie


            Hi Alet. I'm sorry about your husbands diagnosis and angry for you that he/she burdened you and kept your husband in the dark. You are in a catch 22 situation. If you don't tell him and he finds out that you knew before him, would he hold that against you. On the other hand, if you told him, would he accept it. The neurologist ought to have explained to both of you at the same time. Sorry I don't know what you should do. You know your husband so do whatever you think he would want. Take care. Lynne x
            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.


              Dear Alet.
              I am suffering and I know I have a problem. Though the neuros may differ. Similarly I believe the sufferers are already aware. It's just a matter of formality? To inform them. The sooner he knows.the better prepared.he can be for the daily changes and the new normals. Just my two pence.


                Hi Alet and welcome to the forum;

                I echo what the others have said and like Fugitive, think the sooner he knows the better.

                Best wishes, Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


                  Hi Alet, from my own recent experience sitting in with my mother for appointments, the general neurologist first mentioned MND was very likely and the specialist MND neurologist had quite a clinical approach to explaining it at the official diagnosis which was quite helpful at the time. However, it sounds as if there has been something missed in the handling of your treatment for you to be left in this position. I have been finding services very disjointed to the point of sabotaging my own efforts to help my mother, so I would be inclined to take ownership of any situation that you find yourself in. Best of luck, Tania