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? πx
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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!
SueHusband Albert diagnosed PMA Feb 21
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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.
ββββOriginally posted by matthew55 View PostI My neurologist was interested but a little worried about what he might read in regards to their profession.βDiagnosed 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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As a lay member of a research advisory group I often refer researchers to the forum for information. I think itβs 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.Iβm going to do this even if it kills me!
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