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Coming to terms with a new diagnosis

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    Mary C

    Thanks for your informative reply. I know I need to talk and document for/with husband, future plans.

    I did it for my parents and have the forms.

    I will pass on the information to Thomas

    Kindest wishes


    Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.


      DeeH and @Daughter1 My local hospice offers counselling to patients and carers. No doubt others do too.
      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.


        JWright11 I am in my 70s too, and my 2children have only just got round to having a child each. So my grandchildren are a few months old and 3 years old. I feel so sad that I won’t see them grow up, but it’s lovely to see them now , although very frustrating that I haven’t the strength to pick up the baby, and my voice is very weird, but they don’t seem to mind. I am really sad I can’t help my children more with their young ones. But I have had a pretty long life with no wars or ecological disasters ,so feel a lot more fortunate than those diagnosed at a much younger age (but wish I could live into my 90s like my granny!). Sending love to you and your dad and family as you cope with it all, and that you can savour your remaining time together
        My daughter has got me to write weekly answers to questions in a website called Storyworth, so a book is made with stories of my life to share with grandchildren later. I don’t know if your dad is up to sharing such things with you? I wish I had asked more questions of my dad before he died. X
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!