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A bad day or two

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    A bad day or two

    Yesterday my beautiful sister lost her battle with mnd. She was diagnosed with bulbar mnd 15 months ago and has always been so positive and helped me come to terms with my own diagnosis earlier this year.

    Like me she was in hospital with pneumonia last week but she couldn’t fight it off. I feel lost and whilst I’m know there is only one way this disease ends I can’t help feeling angry that it takes so many people too soon.

    #2
    Oh Karen my deepest sympathy. It must be so hard for you and your family dealing will the sadness. Much love x
    Diagnosed May 2021 bulbar onset als.

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      #3
      I am so sorry for your loss Karen x

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        #4
        Oh Karen, I am so sorry to hear that. I can only imagine how your sister's death has impacted on you; you must be truly devasted and heart broken.

        Sending you my deepest condolences.

        Love Ellie xx
        ​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
          I'm so sorry for the loss of your sister. Sadly this condition does take too many good people too early. Thinking of you and your family x

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            #6
            Sending you caring hugs. This is the most awful illness xxxx
            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

            Sense of humour intact throughout.

            Sadly passed away peacefully 2/9/22

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              #7
              Oh Karen I am so sorry but then it's dreadful disease has lost as well. My husband doesn't want to eat. He keeps saying he feels sick. Part of me is panic stricken that he doesn't want to eat but the other part of me would be relieved that the disease doesn't get the opportunity to get any worse. It's such a dreadful mix of emotions.

              Sending love and hugs to you and your family.
              Xxx
              when i can think of something profound i will update this.

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                #8
                thinking of you sending hugs x

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                  #9
                  So sorry to hear this.

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                    #10
                    Thank you everybody for your kind words, all I keep thinking is that she is no longer in pain which she was at the end, but it still hurts that she has gone.😢

                    The hardest part is that it has hit my own children really hard because they know I am on the same journey. All I can do is to try to stay positive and as well as I can for as long as I can.

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                      #11
                      Karen62 I am so incredibly sorry to read this. You are all going through so much at the moment. We are all thinking of you.
                      On a side note, was genetic testing and possibility of any gene therapy discussed with you? I keep thinking of the news article with the gene therapy for cases of mnd with a clear family history? And again I am so very sorry for your loss and what your family are all going through.
                      Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                        #12
                        Zante yesgentic testing was discussed and I was test and have the C9orf72 gene which is just another blow for my family. I was meant to be taking part in th WAV004 trial, but after my PE that is now unlikely.

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                          #13
                          Karen62 is that the gene they are doing the specific gene therapy trials for?
                          Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                            #14
                            Originally posted by Zante View Post
                            Karen62 is that the gene they are doing the specific gene therapy trials for?
                            Yes one of them

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                              #15
                              Karen62 I have just been reading up about the trial you mentioned. I really hope that u can still participate when you are fully recovered as they are recruiting currently it says. Am so sorry Karen. Take care. X
                              Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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