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    Hi from Clement Way

    Hi there, I have joined you as my friend’s husband has just been diagnosed with MND and I want to help her though this horrible time she is going though.

    He has only had MND for a couple of months but the consultant as only given him about 3 months to live. My friend says that this has happened so quick.

    Please help me to help her though this difficult time.

    We both belong to a mental health group.

    Thanks for answering this for me.

    Clement Way

    #2
    Hello Clement Way. I wouldn't put too much on a doctor's opinion as regards life expectancy. Just take it one day at a time like we do. Go mad else! 😉😀x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Welcome Clement, sorry to hear of your friend's husband, which must be very tough on you too.

      Some people do progress much to quickly, I'm afraid, and obviously his consultant knows how the man's symptoms are progressing in order to give the 3 month prognosis. The biggest cause of death in those of us with MND is respiratory failure - has he trouble breathing and a machine to help? Not everybody chooses to use one and it's important to say that it is a personal choice.

      If your friend and her husband are not yet in contact with a palliative care team, now is the time to. Although the man was told he has 3 months, it can often be very difficult to give survival times which are meaning ful, but people naturally fall into the trap of 'counting down'... Many of us here have smashed our prognoses, many of us haven't.

      Just be there for your friend - hopefully you get to spend time together away from the house.

      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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        #4
        Hi CW. Sorry for your friend's husband. It's devastating to get such news. Nothing to say that can ease the distress but I'm sure you will be able to help her and him by just being there and supporting when need to cry and for the all the other things x

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          #5
          Hi Clement Way, sorry about your friend’s husband’s diagnosis. The only thing that I can suggest is that they get in touch when their local hospice who can offer lots of different services for both the person who is terminally ill and their family. 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.

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            #6
            Just don't get referred to a Hospice then go in hospital for a week without your phone. You return to a rude letter saying they have given up trying to contact you and your off the books. 😠
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              I think what Matthew is saying is it’s important that if you have arranged for A and then B comes along meaning you can’t go to A let them know ASAP. I wish you and your friends strength and peace as you go through this horrible saga. Remember you are a very important part in your friends life and even more so now. Stay strong.

              Richard
              Richard

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                #8
                I’d get in touch again when the hospice Mathew, explain about why you were out of phone contact (emergency admission to hospital without your phone) and that you’d like to re-apply. They must have sent you a standard ‘no replies received letter’ and certainly would understand how the ‘no replies’ came about. Good luck, 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


                  #9
                  To Matthew
                  Oh so that’s what happened with the hospice.I hope by now you have got yourself re referred back to the hospice?Maybe email them and explain you were admitted to hospital hence missed their attempts to contact you.
                  Best wishes
                  Mary
                  ​​​​​​​

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