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    What a day

    So take my new med for my prostrate and the tube gets blocked. This happens at ten am. After the Carer, nutritionist and specialized nurse all have a go at unblocking none of if works. At six pm completely fed up I fix it myself. Everyone was too scared of hurting me. I took out 150mil with some very odd stuff in it and it works like before. If a jobs worth doing...... 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

    #2
    You must be a wizard to fix it yourself Mathew. Well done x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

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      #3
      Good that you can fix your own plumbing. Well done you. 😚
      when i can think of something profound i will update this.

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        #4
        Aw ... I really wouldn't want to hurt you either ! Huge well done for fixing it yourself xπŸ†

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          #5
          How did you manage it then? x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Good for you Matthew.

            Can you avoid it from happening again, as in, if they are tablets, is it the coating that doesn't fully dissolve or, if it's a liquid, is it really sticky? xx
            ​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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              #7
              They are tiny balls that don't dissolve. I'm gutted. 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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                #8
                Using a 30mil syringe kindly provided by the specialist nurse first then a full 60mil. I just poured it down the sink. 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

                Comment


                  #9
                  Originally posted by matthew55 View Post
                  They are tiny balls that don't dissolve. I'm gutted.
                  Can some other medication be prescribed or maybe that medicine comes in different forms - your prostate (nor you) should not suffer just because you can't swallow 😣πŸ˜₯ xx
                  ​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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                    #10
                    Matthew, do you need a few small syringes? I have 20ml syringes. xx
                    ​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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                      #11
                      I never use them but my cares might. 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

                      Comment


                        #12
                        I'll send you a few, if the carers find them useful, you can order a few boxes. xx
                        ​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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                          #13
                          Ah thanks 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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