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What do you lot think?

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    What do you lot think?

    I suggested to my MND team that if they wanted to have an up to date idea of my progression then they should come on here and read my posts. My neurologist was interested but a little worried about what he might read in regards to their profession. I said he'd be fine. What do you guys think about having them on here? 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    If they're good at their jobs then they should have nothing to worry about.
    they will also find out what we would like to know.

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      #3
      Feedback is the breakfast of champions however I’m not sure about the forum becoming potentially a remote consultation tool.

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        #4
        I'd be surprised if no one looks on here.

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          #5
          I agree with Denise. I always assumed that some professionals might occasionally have a look. After all, there are always about a hundred guests online.
          Each day is made easier with a bit of humour.

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            #6
            I always wonder who they all are and why don't they say something. πŸ€—

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              #7
              I would love to hear another neurologist say that 1 in 10 people initially diagnosed with MND are misdiagnosed and recover

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                #8
                Yes Denise I have often wondered who the "Guests" are myself, why not just join up ??

                Mathew just to say your Che Guevara - I loathe it ha ha - It reminds me of a Tee shirt my husband used to wear and caused me all sorts of washday problems as the red used to bleed into the other washing - everytime I see it I think of that and my ruined washing!

                Sue
                Husband Albert diagnosed PMA Feb 21

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                  #9
                  Lol, I had the poster from 15 to 25 😁x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #10
                    Like a red shirt to a bull. πŸ˜ƒ

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                      #11
                      Some general observations, not pertaining to you personally Matthew:

                      Why would a Neurologist & team not know by looking at, and talking to, the person sat opposite them, how they have progressed since their last documented visit? Isn't that the purpose of going to the hassle of attending an appointment instead of being sat at home in a nice warm sitting room - or have I got my appointments all wrong?

                      I guess medical professionals loosely fall into the "affected by MND" criteria for Forum membership, and they could learn a lot by reading some posts but is any Neurologist really going to trawl through hundreds of posts to find ones relevant to one person's progression? I don't know.

                      ​​​​
                      Originally posted by matthew55 View Post
                      I My neurologist was interested but a little worried about what he might read in regards to their profession.
                      Ah, the self-serving reason...
                      ​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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                        #12
                        All opinions gratefully received 😁x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                          #13
                          As a lay member of a research advisory group I often refer researchers to the forum for information. I think it’s an untapped source of what we experience daily and the health care professionals can learn a lot but I guess they are busy doing their day job.
                          I’m going to do this even if it kills me!

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