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    #16
    matthew55 No, I don't have it in for you today.

    Your comment belittles those who would rather stay in blissful ignorance. We all have a choice about how we, as individuals, choose to live with MND. And it isn't 'wrong' to be in denial, not want to know things, not want a feeding tube or NIV or not want to prolong life - that's the point I'm making.

    Still love ya 😘😘
    ​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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      #17
      And I will always love you. But I think he makes a good point about getting stuff that only lasts a month or two. 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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        #18
        Ellie
        Hi Ellie, I know what you mean about going to clinic.A few people with MND seem to attend the same clinic for neurologist check up.I do feel sad when I see people looking physically worse as I do on each visit.
        I can’t help at times think what’s coming next especially when I see people who I could talk to a year ago no longer having speech.
        However, sometimes I take strength from them as their carers communicate on an app or just by understanding the persons attempts to speak.

        matthew55 ..Think you put that link on to try and help people and you know we are all at different places in our mind.Some people may benefit from viewing it.Who knows I may feel it’s just what I need in the future but not today.

        Hope you both sleep well.Goodnight ..Mary

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          #19
          Glad to see there are others who don't want to see all the details about MND. I for one can do without it. Good for those who do, however.

          matthew55 I find it strange that you are opposed to prolonging your life, yet you opted for a feeding tube?
          Last edited by aussiegirl; 27 September 2021, 00:31.

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            #20
            I'm not suicidal just waiting for nature to run it's course. Plus I don't like pain. πŸ˜πŸ€—πŸ˜πŸ˜šxx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #21
              I watched it, Matthew. Don't look endlessly online for info, but was interested to see what you thought important. If I hadn't felt in the mood to see it, I definitely wouldn't have, do feel it is very important for our mental healths to take things as we feel able. I agree about not rushing into things that won't last you very long eg I bought a workstation for preparing food which helped only briefly before trying to use my hands more made them more liable to cramp and tiredness (anyone want it?!) I am horrified sometimes to discover new things, but if people are still managing to be positive, I do find that so inspiring and helpful x
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #22
                Thanks Heather. I find my right hand getting very tired very quickly recently. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #23
                  They say knowledge is power but for me it depends on how I feel.and how my MND is progressing.Currently my left arm is weaker and have limited use of hand especially fingers. Putting hope into physio and acupuncture
                  Not sure it works but it gives me hope and I
                  will take each day as it come
                  Love Jane x

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                    #24
                    That's it my dear. We all have opinions and you have to respect individual wishes. Simple.
                    when i can think of something profound i will update this.

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                      #25
                      strong opinions, freely expressed and taken with respect. have not visited the forum for over a week and i'm humbled by the love and support and sharing. we all know now, more than ever before, there is no 'right' answer; just an answer for each of us that is 'right, at that time. tip my hat to you all. we can take the occasional 'chafing' in our stride.....

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                        #26
                        Chafing and strafing πŸ˜‚
                        Richard
                        Richard

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                          #27
                          We are like a family in more ways than you'd think. πŸ˜πŸ˜€πŸ€—πŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #28
                            Originally posted by matthew55 View Post
                            We are like a family in more ways than you'd think. πŸ˜πŸ˜€πŸ€—πŸ˜xx
                            Well said young Matthew.! We are family ! 😘πŸ₯°πŸ€—xx

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                              #29
                              I do so love you Deb I am 56 years young! πŸ˜πŸ€—πŸ˜˜πŸ˜xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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