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    hi everyone,

    I haven't posted much really since my dad was diagnosed on January 9th this year, mainly because his progression happened so fast we were literally thinking on our feet.

    On Tuesday this week my dad passed away, I feel robbed. I feel lost and empty and so angry with this illness right now.

    Last September he was in Thailand holidaying with no signs and now he's gone.

    He had lost his ability to swallow, most of his speech had gone, upper limbs didn't work, legs were ok but tiring.

    I honestly just can't believe it. I'm sorry its not a positive post but I just feel lost and angry.


    Time heals the pain but your heart will always carry the love.
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Oh Claire I'm so sorry for your loss. He didn't get long at all, did he, so I can understand why you feel robbed.

      I've no magic words for you Claire but I hope you have good support and people to talk to. As Matthew said, your Dad will live on in your heart.

      Take care.

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


        Claire, I am so sorry to hear about the loss of your Dad. It was all so quick so it's not surprising you feel so bewildered and cheated of more time.

        Your Dad was blessed to have you as his daughter and I hope you have love and support around you.

        Take Care of yourself.
        Love Debbie x


          So sorry for your loss and I understand the feeling of being robbed. My friend got a lot of help from bereavement counseling from her local hospice, after her dad died quite quickly from cancer.

          Please take care




            Thank you for your lovely words xx


              Claire, so sorry to see your Dad has passed away, such an unforgiving illness to have robbed you so soon. Hopefully happy memories will help heal your wounds.


                Oh Claire my heart goes out to you and your family.
                love and hugs
                when i can think of something profound i will update this.