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    The member list

    I cant help wondering why we only see posts from very few. Should we be encouraging involvement, do we even know if they ever log in? Why join, then do nothing? Am I just too nosy for my own good? Probably
    Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

    #2
    Hi Evelyn,

    I guess the forum is like life in that some people are more sociable than others. Of course we mustn’t forget that the ability to type is useful as well as the familiarity with technology. Many people look in for information and some only visit the site occasionally. Personally this forum gives me a connection to others going through common experiences be they pwmnd or carers and family members.
    I’m going to do this even if it kills me!

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      #3
      EvelynMW We are singing from the same hymn book my friend .👍😍🤗😁xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        I've always thought the same thing Evelyn. Be nice if they just said hi. Then again how many people can't even say good morning when you meet on the street!

        morning everyone
        love and hugs Denise xxx

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          #5
          Morning all xx hope your doing as well as can be x

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            #6
            Morning Pat and all our friends on here. Another hot one
            I’m going to do this even if it kills me!

            Comment


              #7
              Originally posted by EvelynMW View Post
              I cant help wondering why we only see posts from very few. Should we be encouraging involvement, do we even know if they ever log in? Why join, then do nothing? Am I just too nosy for my own good? Probably
              Hi EvelynMW ,

              The forum is a public space and is set up to allow anyone to view posts without needing a user account. We know that a lot of users use the Forum as a source for information and don't wish to post.

              As other members have said, everyone is different and the forum is here for everyone living with and affected by MND. This is reflected in our Forum Guidelines and Terms and Conditions.

              Many thanks,

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

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                #8
                Hi Pat. I didn’t see your 9.15 post to say ‘good morning’ etc until just now, I’ve been distracted today with the lovely sun outside our windows and me getting reading for my MND Clinic appt in Salford this afternoon, I get up between 5.45 and 7.15 (pain dependant). I’ll check in tomorrow morning. I’m usually in the shower from 8,30’ish so if after showering and dressing it’d be 10.30'ish as it takes me so long. Love Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

                Comment


                  #9
                  I was going to reply to you all, but i know i would say something stupid, so I will just say, thank you all
                  Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                    #10
                    Im a new member. I log on once a day and i am guilty of not posting. But i get lots from reading others posts and find good tips etc. Maybe some come to the forum for differing reasons.

                    Comment


                      #11
                      Hi Shelley

                      Nice to know and really great you popped in and joined in.

                      Denise xx

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                        #12
                        shelly21 Thank you for popping in! I went through the members online last night and saw many that had never posted. Just me being nosey as usual!
                        Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                        Comment


                          #13
                          Lynne K Trust i got the name right as no names are popping up as i type today - new glitch? I feel for you - 2 hours to get dressed? And there's me complaining about taking 5 to 10 minutes to put a bra on!??!!! Lol
                          Last edited by EvelynMW; 7 June 2021, 12:10. Reason: Sorry - my second try worked? Could not not see that till i posted!!!
                          Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                          Comment


                            #14
                            Yes Evelyn 2 hours to get showered and dressed. I can put most things on myself with massive effort, but Steve fastens my bras and sometimes puts my socks
                            and shoes on. I can do socks and shoes with massive effort but sometimes I don’t have the energy or inclination. Lynne x
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Lynne K Just about to go out - hubby (Peter) will have to do my jewellery - i am assuming i will be able to do my shoes up! Which reminds me, must go get them from the summer show bag!
                              Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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