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    To My Friends on the Forum

    Sadly tonight my lovely wife Doreen died in my arms with her family in attendance. D was diagnosed with ALS/PBP in April 2017 and eventually ended up quadriplegic, peg fed and unable to communicate using eye gaze from early this year. After a major change in her breathing ability on Tuesday she did not recover.
    Thank you to all contributors on the website who gave inspiration to us both to battle on and to make things "easier" to get the help and direction during this terrible time.
    Love to all Steve G

    #2
    Steve, I'm really sorry for your loss but it was the best possible end that D was in your arms with family in attendance. Take care all of you. You'll be in my thoughts, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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      #3
      Steve I’m sorry to hear about the loss of your wife and I hope you took some comfort from being with her at the end. Please accept my condolences and I hope you and your family can look back on happier times together.

      Best wishes,
      Barry
      I’m going to do this even if it kills me!

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        #4
        Steve, thank you for thinking to post on the Forum at such a difficult time for you.

        I am so sorry that your beloved D is gone - she was blessed to have you and your deep love which will last forever.

        I'll always remember what you said to me privately Steve, it truly resonated with me - thank you.

        Heartfelt condolences to you and to D's family and friends.

        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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          #5
          Sorry to hear that your wife has gone, Steve;

          Feeling for you all there.

          RIP, Doreen.

          Love 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.

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            #6
            Steve, I am so sorry to hear about the loss of your beloved wife.

            I hope you have love and support around you and that in time your memories of happier times will bring you comfort.

            Love Debbie x

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              #7
              So sorry Steve xx

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                #8
                Good afternoon Steve

                I am so sorry to hear your news, but warmed to hear of the way in which you were able to say goodbye

                Please accept my condolences for your loss
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

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                  #9
                  Thinking of you.

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                    #10
                    So sorry for your e

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                      #11
                      Thank you all for your kind responses. Doreen will be laid to rest on 27th December, but as usual, not without a fight !
                      regards Steve

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                        #12
                        Hi Steve;

                        You seem to have to fight for everything as a carer or a person struggling with Mnd. Things could be so much easier without the extra frustration and unneeded stress.

                        Hope all goes smoothly.

                        Love 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.

                        Comment


                          #13
                          Sending love Steve

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                            #14
                            Sorry to hear about your Doreen's passing at what should be a happy time of year. I hope the funeral went well. Take Care - I lost my darling husband in October, so can understand a bit of what you are going through

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                              #15
                              Hello to all those who kindly responded,
                              As you can see I have been off line for a short while. We finally laid Doreen to rest on 27th December, attended by her family, friends and warmly by some of her carers. Clearly not a great Christmas but there are no predictions with MND, hopes yes, but no guarantees
                              I thought a long time about how to further contribute to Doreen's fight against MND. One clear message came through to me was that the quality of care was important in the quality of life for those who have MND.
                              What we as a family decided was to support our local Hospice , Alice House, Hartlepool, donations instead of flowers at the funeral and continuing fund raising. Without respite care I could not have managed the increasing demands of one to one care for Doreen.
                              I will monitor this site and post if I can help with tips on how to cope, particularly with for those who feel over whelmed
                              Love to you all Steve

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