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Sad news

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    Sad news

    I know I haven’t been on the forum for a while but the last few months have been difficult.

    My husband Steve passed away on the 14th June. He had pulled through 4 bouts of pneumonia in a year, but after his last hospital stay he didn’t really recover as well. He was a great fighter and always tried to stay positive.. he wrote many poems and his fathers and his own life stories mostly using his eye gaze. He had a poem and an a article about the hospice day therapy he attended in the Thumbs up magazine and was very proud of that.

    We attended the 2nd Thursday MND group in Nottingham which he enjoyed very much making many new friends. This forum has been a great source of information and helped many times with issues he had.

    Thank you to you all

    Sue x

    Oh Sue, I'm so sorry to hear your sad news - heartfelt condolences to you.

    Steve was a warrior indeed and you were instrumental in enabling that.

    Wishing you love and strength.

    RIP Steve.

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


      Sue, I am so sorry xx


        Oh Sue, I’m very sorry for your loss of Steve. What a warrior he was. You will be in my thoughts. Sending much love, Lynne xx
        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.


          Hello Sue,

          Although we have been in contact via email I want to say how inspirational Steve was to many of the members of our Nottingham branch. His humour and positive approach gave courage to many, especially the new members who were frightened of what lies ahead on this journey.

          I enjoyed Steve’s poems and I often wonder if he wrote one about his wheelchair. We would have discussions about the latest issue with the machine or his loss of function and how he would resolve it. These memories are what makes it so special to have a group where we can meet friends and share experience and knowledge, plus the occasional humour. Sadly as we make friendships we accept that it is a temporary thing and I am privileged to consider Steve as a friend.

          I look forward to seeing you again Sue once you are ready to join us and once it is safe to meet as a group.

          Barry x
          I’m going to do this even if it kills me!


            Oh Sue, I am so sorry for the loss of your beloved Steve,

            My thoughts are with you,
            Love Debbie x