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Peter Pan

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    Peter Pan

    It breaks my heart to say that we have lost our much-loved forum member, Peter, who died last week.

    Peter had become heavily dependent on NIV and took the decision to go into his hospice last week and withdraw from using NIV as, in his own words, “I feel so unwell with MND that this will be the right time for me.

    Condolences to his lovely wife Sue and to his family.

    Peter blogged about living with MND - if anyone would like to take a look, click Peter’s blog

    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.

    Oh no. Such sad news.

    Love to his wife and family. Peace at last.

    when i can think of something profound i will update this.


      Oh no am so sorry to read this. Really sad news. Thanks Ellie for letting us all know. Condolences to his family and much love xxx
      Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.


        I am so sad to read this. I have received some valuable advice from Peter and will be forever grateful to him. Thank you for letting us know Ellie. Sending love and condolences to Peter’s family. RIP Peter. xx
        Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.


          Such sad news. RIP Peter Pan. At rest in never never land. Condolences to all the family and his many forum friends.


            Very sad news. I did notice Peter wasn't posting. He was so in check with the reality of this disease. By reading his blog it pushed me to tidy up my affairs etc. I really thank him for that.

            Much love goes out to his family x
            Diagnosed May 2021 bulbar onset als.


              So ery sad to hear this. Thank you for letting us know Ellie. I send love to all his friends and family and hope they can cherish memories of easier times x
              Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

              Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


                Condolences to his wife and family. 💐

                I found his blog to be full of useful information and well written. I’m going to miss seeing him post here.

                Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.


                  Such sad news as he was so ready to help others with his advice and wonderful blog.

                  My condolences to his family.

                  RIP Peter
                  Diagnosed 3rd November 2021 Bulbar Onset


                    I'm sad to read this, I'd noticed that Peter hadn't posted recently but had wrongly assumed he was having difficulties with technology.

                    Peter spoke openly about the effects of the condition and that whilst becoming increasing dependent on NIV was clearly hard it gave him the right to decide when it was the right time for him.

                    I'm glad to see he was finally able to enjoy his garden through using the new ramp and he had a number of happy occasions recently.

                    My thoughts are with Peter's family and friends and thanks to Ellie for letting us know


                      Such sad news, thank you for letting us know Ellie.
                      I too have benefited from reading his blog.

                      My thoughts are with his family and friends x
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.


                        Such very sad news. My thoughts are with Peter's family and friends.

                        Thank you for letting us know Ellie . I found his blog so informative and realistic. He seemed to face each challenge with stoicism and take pleasure in what he was still able to do.

                        RIP Peter xxx


                          So sorry to hear this.

                          Sending love to his family and friends.

                          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


                          • Brave man Peter. Enough is enough. RIP x


                              Peter Pan was really kind to me. (Yes I’m as yet undiagnosed) but asked advice early in symptoms and he messaged me. He worked for CAB in his later years I believe, and was very kind and knowledgable.

                              So sad for his family, my thoughts are with them.

                              Sad to hear this news RIP Peter, your blog was inspirational