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    New joiners this week

    Looking at who is online now - i looked briefly at the almost non-existent profile information - and noticed that a few more people have joined this month. If you are brave enough, please write a short introduction to yourself and your situation, it is the least we can do to try and get to know each other. just wish we could all have a short profile piece include in our profiles.

    Suggested it to MNDConnect , but, so far, no change. I wonder if there are any persons tasked with development of this site?
    Last edited by EvelynMW; 17 June 2021, 22:25. Reason: Took out my apology for writing in italics - once the post was loaded, there were no italic words! Does anyone know how to introduce different fonts, and or
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

    #2
    EvelynMW Please understand that many people want to stay under the radar, sometimes until they feel ready and able to share details of what could be the most devastating time of their lives, or some people will never feel able to, or want to, share any details of their lives. And this is absolutely OK.

    ​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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      #3
      Ellie, of course i understand that, but it surely does no harm to let members know that they can talk to us.
      Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

      Comment


        #4
        EvelynMW Re changing fonts in a text box: you can highlight specific text within a post and change its font, or use a non-default font for all of your post(s). You must have your formatting box open, this is what it looks like on a PC, a phone will probably be different:

        Forum Text Box (3).png

        If you cannot see the menu bar with the Font tab, you need to click the A box on the top right of the text box to get the menu bar.


        This is Comic Sans font, for example.

        Good luck! 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 have often wondered where the 5,000 patients at any one time comes from................who is picking up the data on this............I can only imagine that those "Viewing" would indeed make the numbers go up,

          So many newbies coming on - almost daily
          Husband Albert diagnosed PMA Feb 21

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            #6
            That's an interesting question sue. I'd like to know who and how they collect this info.

            problems with diagnosis would suggest this number is not accurate. 🤔
            when i can think of something profound i will update this.

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              #7
              Originally posted by EvelynMW View Post
              Looking at who is online now - i looked briefly at the almost non-existent profile information - and noticed that a few more people have joined this month. If you are brave enough, please write a short introduction to yourself and your situation, it is the least we can do to try and get to know each other. just wish we could all have a short profile piece include in our profiles.

              Suggested it to MNDConnect , but, so far, no change. I wonder if there are any persons tasked with development of this site?
              Hi EvelynMW ,

              As we said in our email exchange the other week, it would be best to ask these sort of questions to ourselves not our colleagues in MNDConnect . It is us, Admin_MND, who are developing the Forum and monitoring it.

              We did also confirm, as Ellie has, that some people prefer to remain under the radar. This is a public free space for people to use for guidance and support - it is up to them if they wish to interact and become a member.

              This is a safe space for anyone living with and affected by MND and we therefore all need to respect that some visitors may not be ready to interact on a personal level.

              Many thanks,

              Forum Admin
              Our working hours are Monday to Friday 8:30am until 5pm

              Comment


                #8
                Originally posted by Ellie View Post
                EvelynMW Please understand that many people want to stay under the radar, sometimes until they feel ready and able to share details of what could be the most devastating time of their lives, or some people will never feel able to, or want to, share any details of their lives. And this is absolutely OK.
                We totally agree with you Ellie
                Our working hours are Monday to Friday 8:30am until 5pm

                Comment


                  #9
                  Originally posted by Suefromwakey View Post
                  I have often wondered where the 5,000 patients at any one time comes from................who is picking up the data on this............I can only imagine that those "Viewing" would indeed make the numbers go up,
                  That figure of "5,000" people living with MND in England, Wales and Northern Ireland, is an estimate, based on known historical incident rates, and calculated from census population data. The figure is probably a bit on the low side due to census lag time, but it has nothing whatsover to do with this forum.

                  The MND Registers in the UK help in calculating the incidence of MND but, as these are opt in regisers, they will never collect complete data - still, if people want to build a better MND data set for the UK, the more people who join the register through their clinic or consultant, the better.

                  Ireland's MND Register, in contrast, is *not* opt in , and , as such, provides up to date and accurate information not only on numbers, but for other data sets too. It gathers data from hospital records and Deaths Register.

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

                  Comment


                    #10
                    Hi Ellie

                    Ok as I'm not in UK, but I'm interested to know, who do you register with if it is opt in?

                    I see there's the mnda and nhs health authority. Does everyone, who wants to, register with both? Or do these organisations share the info?

                    as the census is 10 years apart that's a long wait for figures.
                    when i can think of something profound i will update this.

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                      #11
                      Admin_MND i struggled to identify how to name groups in messages, then realised i shouldn't use the @ sign. The development i would like added to the profile is to allow others, when looking at a profile to see, the parts we might have filled in. i am sure many people wont have filled in the descriptive section, and that is their choice. On the other hand, i have filled the sections in, and am happy for them to be viewed by other members.

                      denise Where are you based, had no idea you aren't in the UK.
                      Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                        #12
                        Hi Evelyn

                        I'm in Portugal

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

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                          #13
                          denise Blimey! Are you an expat?
                          Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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                            #14
                            Yes Evelyn. 10 years. 😎
                            when i can think of something profound i will update this.

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                              #15
                              hi everyone
                              i'm new to this v exclusive club just turned 58, single parent, my 18 old just finished school. I got diagnosed last week after six months of investigation for speech and swallow problems. Thought it was just a case of losing my speech permanently as other than that i was fit and healthy. so this week has been the start of a whole new perspective....
                              i'm not a big one for social media, so may choose to lurk; or much good at being told about etiquette, so i'll try to behave, but no guarantees......
                              Please to meet you
                              jackie

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