No one and I mean no one knows what it is like living with MND unless they themselves are living with MND. No consultant, GP, carer, health professionals or Joe Blogs. Just saying. πx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
How could they?
Same as only people with cancer know what that's like and only blind people know what living as a blind person is like etc. etc.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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Agreed but it's surprising that so many of the above claim to. ππxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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I think the people who are caring for someone with MND have some idea. But I know what you mean Matthew. My friends and family have a lot of sympathy for me, but they're pretty powerless to do anything to help, as far as I can see. Has anyone got any suggestions for how they can better understand our situation and needs.Each day is made easier with a bit of humour.Comment
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A couple of months ago I started writing a description of a day in my life with the idea of giving people an idea of what we go through every day. Not sure if I'll be able to get anyone to read it, if I ever finish it.Each day is made easier with a bit of humour.Comment
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Matthew makes a valid point because all the health professionals can do is make comments based on anecdotal evidence and we know from the information shared here on the forum that everyone has a different experience of life with MND.Iβm going to do this even if it kills me!Comment
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How on earth can people know what it's like to win, if they come from London, for instance????
Man Utd.jfifComment
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