Announcement

Collapse
No announcement yet.

This forum

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    This forum

    I am becoming disillusioned with this forum. There seem to be only a handful of people post anything and I don't know why I bother posting anything. Is this my future, no one talking to the man who can't talk or move, pass me the tablets! ☹️

    #2
    Hi Matthew,

    I don’t want to make you feel any worse but I must admit I’m having similar thoughts especially if you look at the amount of views generally against posts. Seems that some postings have as much as 1200 views and as little as 5 to 10 posts so obviously people are reading them but most are not making comments or offering advice to new members like yourself. I was told on average in the UK there are 5000 people with MND in some form or another so most of them are either not interested in getting involved or in a lot of cases unable to do so.
    However, I would like to say Ellie, you are amazing how much you get involved and how much you try to help people especially considering your own situation and how you have to write the messages.

    Best wishes Matthew

    Comment


      #3
      There was a recent post referring to the fact the forum wasn’t having as much traffic as normal. Several reasons were suggested but, personally, I think it’s to do with our reaction to lockdown and general unease with fears surrounding coronavirus as well as MND. Or maybe, on a more positive note, the beautiful weather is helping?

      Comment


        #4
        Hi Matthew,

        I’m sorry to hear that you are feeling disillusioned with the forum so soon after joining. Please try to understand that some of the members are carers who have a full on time looking after their loved one. Other members have difficulty typing (Ellie excepted) and often just look in for news, information or to see how friends are coping.

        Communication is so important and for those like you and I who have little or no speech this forum is a valuable tool but for many people they may look in but don’t want to engage. Due to the nature of the disease we gain new friends and sadly loose some, so over time the banter changes. We occasionally have disagreements but we generally patch up our differences. For “old timers” like me I have found this forum a valuable outlet and the knowledge amassed within our members is far greater than you can get from a 20 minute chat with your care team.

        Please try to look at the forum in a wider context than a chat room and I’m sure you will find support and occasionally humour. One thought occurred to me is that due to lockdown we are not going out so we have less to discuss as our daily activity is unchanged. I hear we may be released from confinement tomorrow but we still need to be careful.

        Best wishes,
        Barry
        I’m going to do this even if it kills me!

        Comment


          #5
          Thanks guys I am am so happy that you are around. Sometimes it just gets too much, and having you in my life helps more than you can know. Thanks again.

          Comment


            #6
            Happy Sunday, Matthew

            That's the way forums seem to be. Even on the much-bigger US forum, you see the same people popping up all the time for reasons outlined above.

            I guess it mirrors life - from the kids who always put up their hands in the classroom to the gobby one in the pub 🤣🤣, there are always the vocal few.

            Hopefully you'll continue to be a regular contributor (I sure could do with the help 😋 )

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

            Comment


              #7
              Don't worry Ellie I will support you for as long as I live x

              Comment


                #8
                Yes, I too am totally disillusioned with this forum unfortunately. It only caters for a narrow viewpoint and there is a small group of individuals eager to troll dissenters from other viewpoints. Live is difficult with MND and people don't the extra hassle this forum provides.
                Copyright Graham

                Comment


                  #9
                  waiting foe eye gaze. arms gone.

                  Comment


                    #10
                    Hi Guys, I am one of the people that reads a lot but does not comment very much. For me I don’t feel able to offer the advise, but do take great comfort and get inspiration from you all to help me on my journey. I hope people who are more confident and all knowing will continue to comment and I will also try.

                    Comment


                      #11
                      Thank you for starting this thread Matthew. Hope you're having a good day and are able to enjoy the sunshine.

                      As Miranda pointed out there was a recent post on how quiet the forum had been recently. I think the threat of COVID has possibly added to our feelings of vulnerability and isolation. I know I am really missing family and friends now although I am grateful if they are safe.

                      I do check in most days although I tend not to post if I am having a down day, which is bonkers really as its then we need the support. Some of us have lived with the condition a long time and are more qualified to chat about medical matters than others and sometimes, I guess we just need to feel that someone understands.

                      Take care and stay safe,
                      Love Debbie x

                      Comment


                        #12
                        Oh Iron will, I really hope you get sorted with eye gaze soon ! I cant imagine how frustrating it must be !

                        Love Debbie x

                        Comment


                          #13
                          You guys rock! 😊

                          Comment


                            #14
                            Roll on that Eyegaze, Will - it'll make a huge difference to you.

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

                            Comment


                              #15
                              Hi Matthew,
                              I have been diagnosed in January this year so still feel nervous to offer advice but just wanted to say hello and I hope you get all the support needed.
                              I have found meditation quite helpful but I guess is not for everyone.

                              All the best xx

                              Comment

                              Working...
                              X