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    #16
    I would digi but out of my price bracket. Happily I think nature will provide sooner rather than later πŸ˜‰πŸ˜†πŸ˜„πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #17
      Warning: contains end of life information - skip post if necessary.

      Originally posted by bromleycross View Post
      I did find the discussion on pain relief quite vague and it would appear I need to express a wish to come off NIV then I would be given something to make me comfortable.
      Just to clarify, pain relief and deciding to discontinue NIV are 2 different things.

      Pain relief is self-explanatory and hospices/palliative care nurses are more likely to recommend stronger, round-the-clock pain relief than a GP, in keeping with their ethos.

      Discontinuing NIV, on the other hand, mostly leads to air hunger, anxiety and, as food and liquid are usually discontinued, the meds given control hunger and thirst feelings too. Opioids, sedatives and secretion supressing meds are typically given using a syringe driver. (I have had several end of life chats with my palliative team)

      I'm not trying to sway you away from Dignitas, who certainly fill a need, but didn't want things left hanging, so to speak.

      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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        #18
        Thank you Ellie that’s the sort of explanation I needed , suppose it’s possible that the Pallative care nurse was vague on her first visit not wishing to upset me. I shall certainly contact them for further information .Jane x

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          #19
          Hi Jane, my palliative care nurse answered my questions on end of life care in a reassuring way.She prescribed the anticipatory drugs so they are in my home if and when I need to use them as my wish is to remain at home.My husband and family also feel reassured that the palliative team will aim to keep me comfortable at end of life stage.

          She explained at my request how they are used and for what symptoms.
          For me it is important I know what support is possible at home and my family know who to contact any time for advise when I can no longer do so.
          Next week for me its seeing SALT team member to ensure I know how to use the Predictable App(as not IT savvy).My voice is weakening so I want to be prepared that I can communicate even simply via the App.when speech is lost.
          I hope Jane you get answers you need as it might reassure you and offer you the choice if you wish to remain at home.
          Best wishes
          Mary

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            #20
            I still advocate writing before voice apps but that's just me. 😁😘xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #21
              Originally posted by matthew55 View Post
              I still advocate writing before voice apps
              ... providing you can hold a pen well enough. 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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                #22
                Very true but while I can I will πŸ‘πŸ˜πŸ˜˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #23
                  Hi Matthew, my right hand tremors now so writing is erratic hence I intend to use Predictable App.
                  Best wishes
                  Mary

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                    #24
                    Don't blame you girl. I'm probably going to have give up the pen soon. πŸ˜šπŸ˜„πŸ˜πŸ˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #25
                      Originally posted by Mary C View Post
                      Hi Matthew, my right hand tremors now so writing is erratic hence I intend to use Predictable App.
                      Best wishes
                      Mary
                      I'm getting the predictable app any day soon. I'll also ask SALT to show me how to use it...IT known to confuse me πŸ™„πŸ‘
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                        #26
                        Hello everyone. I was wondering how to get connected to a hospice team in London. Perhaps this is the same as the community care team that regularly visit and contact us (multidisciplinary). This was coordinated by the GP. They are wonderful. Advice appreciated.

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                          #27
                          Hi Aisling Byrne I was referred by my GP to my local hospice. They do have a community hospice team which is different from my community Neuro rehab team (also MDT)

                          So many teams πŸ‘
                          Last edited by LindaB; 19 August 2021, 17:03.
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                            #28
                            Well done Linda taking this step, glad it's being fruitful. I met someone ages ago from Hospice, but haven't seen them since. Maybe time to try re-engage.
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                              #29
                              I've been in email contact with my hospice just this morning.
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                                #30
                                Aisling Byrne If you know the name of your local hospice, check their website on their referral procedure, some hospices take self-referrals.

                                If you don't know which hospice covers your area, google hospice in xxxxx (the London borough or suburb)

                                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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