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    #1

    Membership "Turnover"

    I find myself sadly reflecting on the rate at which I see folks come and go here.
    When I signed up to this forum just a couple of months ago I discovered people who had been suffering for years, and I thought I would be "the new guy" for ages.
    In that short time I have found myself writing welcome messages to so many new members, and saluting the dearly departed who have fallen from our ranks.
    MND is indeed, a bitch, and I find this forum an essential place to find a sympathetic ear.
    Let's keep being excellent to each other - while we can.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.
    Tags: None
    • Likes 7
    #2
    WheelsOfSteel I had similar thoughts. I think it's sad when members of our forum just stop posting and we hear no more. Reminded me to ask someone to post on here for me when it's my turn.
    Yes we're stronger together in this space βœŠπŸ»πŸ‘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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      #3
      Oh yes nothing can be more true. The rotating door as I call it.

      And it brings the rotating door of hyped treatments etc etc.

      A few months ago I sat and pondered what it must be like for MND charity staff as well. They are human like us, and what must it be like to see generations disappear etc. it gave me a much more understanding view of their job. Well, I can't call it a job really, it's more of a calling.

      They often face terrible criticism, none of which I share. Are all organisations perfect? No of course not.

      We have to do the best thing for those who will be diagnosed in the future and not do anything that may slow progress, despite what that might mean for us as individuals.

      We are at a great time for research in our disease.

      Keep positive guys

      Lee
      • Likes 4

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        #4
        I was thinking the same thing. I've seen a lot of friends leave and I pondered what at happened, if they were ok, had they just well .... it's very sad.

        Love to everyone. At least we have each other.
        when i can think of something profound i will update this.
        • Likes 1

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          #5
          Agree with all the above sentiments, and it is worrying when people just stop posting. I really value the support and friendship this forum gives and it’s so important that it is positive and constructive for everyone
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
          • Likes 1

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            #6
            Bear in mind too that sometimes members decide not to use the forum anymore, or are unable to, for a variety of reasons, not necessarily because they've died.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
            ​
            • Likes 3

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              #7
              I intend inventing an a logarithm that will post in my place for the next 100 years. There might even be a cure by then.If it is a bit rude to anyone I apologise in advance
              • Likes 3

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                #8
                Originally posted by Aidan in Shrewsbury View Post
                If it is a bit rude to anyone I apologise in advance
                Self-deprecation and irreverence are good attributes in living with an MND Aidan, don't worry πŸ‘πŸ‘πŸ˜˜
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                ​
                • Likes 2

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                  #9
                  Hope for the best but prepare for the worst. πŸ€—πŸ™„πŸ˜œπŸ˜xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
                  • Likes 3

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                    #10
                    I am a member of a small mutual support group with same MND problem as me - lost voice etc . We meet every 6 weeks and keep in touch by email. No one else posts on here. One of the group died a couple of weeks ago and the rest of us went to his funeral last week. Although it wasn’t too much of a surprise because he had been very ill for a few weeks, it was sudden and a shock. It has affected me more than I expected.
                    Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.
                    • Likes 2

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                      #11
                      John D My condolences on the loss of your friend.
                      Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
                      • Likes 1

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                        #12
                        John D Sorry to hear that John - it really hits home when it's somebody you know personally. xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                        ​
                        • Likes 1

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                          #13
                          WheelsOfSteel I’m 14 months post diagnosis and this is my first real community. I can see that there are a small number of regular posters so anyone who suddenly disappears will be even more obvious in their absence. At least we have had the chance to be a part of this supportive group.

                          Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
                          • Likes 2

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                            #14
                            On Sunday 27 th Feb

                            Thomas my husband will have been diagnosed 19 months. I post his questions and ask my own, as a carer.

                            You have all been amazing support, fonts of knowledge and wisdom.

                            I appriecate you all.

                            I have notice the absence of people on some of the Facebook groups and try and check in here often.

                            Keeping on, keeping on

                            Thomas and I have tried to talk about his digital presence and what to do about it. Any advice welcome.

                            He can't type and eye gaze is still not been sorted. not sure if it will work for him.

                            Donna

                            Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.
                            • Likes 2

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                              #15
                              Yes, I have lost very many friends of the forum WoS.

                              Some to MND but many others to inadequacy of care.

                              I am forbidden to chat further(Big Sister is watching)
                              Last edited by Graham; 24 February 2022, 23:28.

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