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    Please be aware of peoples feelings

    Everyone on this site is here for a reason. Some have this horrible disease and others have loved ones with the disease.

    Unfortunately, regrettably and sadly we all know where it ends. Some can face this and some cannot. Some are very frightened and some have the most horrendous things to endure daily.

    I believe the purpose of this forum is to share our stories, answer questions and to support each other.

    May I be bold and suggest that if you cannot adhere to this then follow in silence by all means but do not post what may be upsetting or offensive. Think before you post. And if I have upset anyone with this I’m truly sorry.

    With love to you all, yes to you all.

    Richard
    Richard

    #2
    I second that Richard. Well said. Lizzie x

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      #3
      Lovely words Richard I'm with you. We're here to be supportive. Together we are strong.
      Denise xxxx

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        #4
        Except me obviously
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          matthew55 Why do you disagree with what I have said and respond with ‘Except me obviously’? I thought my comments were reasonable and acceptable. You disagree. Please explain why.

          Richard
          Richard

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            #6
            Not you Richard. This is yet another example of reading things into what I never said. Denise has been blatantly ignoring me after all the help I gave her because of a few comments I made when I was sadly getting low because I am a mute who can't eat, smile, cry, spit, gargle, stick my tongue out or blow my nose to name a few. You Richard have been the only decent person on here. So sorry but I wasn't talking about you.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              matthew55. I am not the only decent person on here, there are many. Including you when you want to be. Big hug to you

              Richard
              Richard

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                #8
                Sadly you are the only one who thinks that. Everyone else thinks I changed into Mr Hyde.🤔
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Originally posted by matthew55 View Post
                  Not you Richard. This is yet another example of reading things into what I never said. Denise has been blatantly ignoring me after all the help I gave her because of a few comments I made when I was sadly getting low because I am a mute who can't eat, smile, cry, spit, gargle, stick my tongue out or blow my nose to name a few. You Richard have been the only decent person on here. So sorry but I wasn't talking about you.
                  I’m sorry you feel that way Matthew, but I’ve got all those things you have and more, I can’t walk too but I don’t take it out on other people I just try and get on with the life I have left the best I can 🥺 best wishes to you
                  Janette x

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                    #10
                    I admit it I did. I'm not doing it now. What else can I say? Oh and I bought Denise a blender and sent peg feed to Portugal and chatted for ages. I guess it's at these times that you realise who your friends really are.
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      Hi Everyone, I agree with Richard that we need to think before we post. I too found at times that the posts on here were upsetting so then I take time out from here. When I first joined I was delighted to be able to learn from others experiences and occasionally suggest something myself .Of course we all have our illness to cope with and our carers/partners do too. I try and look at what blessings I have daily and of course I feel low at times.
                      I can't imagine how it is to live alone for people with MND ,or to live with some of the awful impacts of the disease that people have described which at present are worse than I currently experience.
                      So for today..Mother's day I intend to be as kind as I can be, put my lippy on and get out for a push in the wheelchair as it always makes me feel good to look at the spring flowers.Just watched a catholic mass on line so feeling uplifted for now! Best wishes Mary.

                      Comment


                        #12
                        Originally posted by richard View Post
                        Everyone on this site is here for a reason. Some have this horrible disease and others have loved ones with the disease.

                        Unfortunately, regrettably and sadly we all know where it ends. Some can face this and some cannot. Some are very frightened and some have the most horrendous things to endure daily.

                        I believe the purpose of this forum is to share our stories, answer questions and to support each other.

                        May I be bold and suggest that if you cannot adhere to this then follow in silence by all means but do not post what may be upsetting or offensive. Think before you post. And if I have upset anyone with this I’m truly sorry.

                        With love to you all, yes to you all.

                        Richard
                        Morning all,

                        Just to further support richard 's words, we also have the same sentiments within our Forum guidelines which everyone agrees to when joining the Forum https://forum.mndassociation.org/forum-guidelines .

                        We want the Forum to be a place for everyone to chat, share advice, show respect for each other and be kind. We will continue to do our best to support you with achieving that and we will step in on posts which go against the guidelines.

                        Many thanks,

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

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