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💙Hospice and well being, weekly activities💙

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    💙Hospice and well being, weekly activities💙

    • Fatigue Management
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    These are some of the activities/groups my local hospice provide; which I think is amazing. Mostly zoom sessions however some face to face.
    Part of their well-being programme.
    My view is it's well worth being in contact with your local hospice to access a range of support.
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    #2
    Mine is still locked down
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Agreed Linda. Have a zoom relaxation session tomorrow then a full review in person with the hospice palliative team on Friday.
      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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        #4
        I am due to have my first hospice visit in the next few weeks, not as an in patient but to attend something they call Living Well.

        I am looking forward to it and shall share my views in due course.

        RICHARD
        Richard

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          #5
          Originally posted by matthew55 View Post
          Mine is still locked down
          I think most are Matthew however should still be providing community support and zoom sessions. Worth checking👍🏻😉
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            John D & richard hope both go well 👍🏻💙
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

            Comment


              #7
              Hi Linda, My local hospice provides No daycare at present.There is a team that will do home visits and phone calls.
              MND A do zoom monthly support groups in my area.
              I also have MND volunteer and monthly psychologist session on zoom.
              All in all I am well supported
              Mary

              Comment


                #8
                Mary C good to know you're well supported. Does your hospice undertake activities via zoom? Seems to differ area to area 🤔
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                Comment


                  #9
                  Originally posted by John D View Post
                  ... a full review in person with the hospice palliative team on Friday.
                  Will Friday be the first time you meet the team John? xx

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

                  Comment


                    #10
                    Originally posted by richard View Post
                    I am due to have my first hospice visit in the next few weeks, not as an in patient but to attend something they call Living Well.
                    Sounds good Richard, looking forward to your feedback 👍👍😘
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Ellie No. Have been to see members of the team more often than I care to remember. Phyllis Tuckwell who have a branch in hospital grounds
                      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

                      Comment


                        #12
                        LindaB
                        In response to your question no I don’t think the hospice is doing zoom meetings at the moment.I was desperate after diagnosis to meet others who live with MND but covid messed that up.So I really was glad MND A run zoom support groups which enabled me to see and talk to others in similar situations.Sadly people disappeared off the support groups leaving me wondering if they were too unwell to continue or had passed away.Also it can be sad to see people deteriorating physically .I have enjoyed sharing with this little group and we maintain humour as we discuss all sorts of topics a bit like on this forum.
                        Best wishes
                        Mary

                        Comment


                          #13
                          Mary C thanks for that sounds like the MNDA support group has been helpful for you , albeit with some sadness when group members leave & seeing the progression of mnd.
                          Isn't humour amazing....even in the darkest times 💙
                          Take care 🤗
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                          Comment


                            #14
                            I am also a lucky one. My local hospice is fully open. I have done a 8 week once a week session on neuro conditions. It allowed me to see others progression which yes sad but also makes it real. I love my visits. I have weekly physio there as nhs not offered it me. I also have the odd massage which is appreciated.

                            Today we had a flower arranging day. even with a weak hand i managed to take part.

                            20211118_132033.jpg
                            Diagnosed May 2021 bulbar onset als.

                            Comment


                              #15
                              Very impressive flowers shelly21

                              Lovely colour cupboards, wherever they are 😊 xx
                              Last edited by Ellie; 18 November 2021, 16:52.
                              ​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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