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    Good idea Ellie. We could have champagne as well πŸ™„
    when i can think of something profound i will update this.

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      Champagne, definitely!!
      ​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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        Morning everyone. Dull here. On my first cuppa 😚
        when i can think of something profound i will update this.

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          Morning, Went to bed at midnight, got out of damp bed for the final time at 4am. Immediately crashed onto sofa and rejoined the world at 8am. Brilliant sunshine followed by clouds. 60mil strong black NescafΓ© taken. Loins girded. 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


            Originally posted by matthew55 View Post
            got out of damp bed for the final time at 4am.
            Damp bed? A warm night under the covers or Stephen's afflication?

            Treasure the fact you're mobile enough to get up and go to your sofa - long may that last πŸ€—πŸ˜˜

            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              I ordered adult nappies at 3am. Pride and arrogance. 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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                Nothing arrogant about that Matthew, we do what we have to do xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  The arrogance was waiting until it happened twice in the same night. I just need to find a new mum to express milk and I will have completed the circle and become a baby again..Just thirty years before I expected to be. 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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                    the nappies that look like pants are better than the nappy style. easier to put on and they fit better. i never thought i would become an expert on adult nappies. oh well had to become good at something i suppose
                    when i can think of something profound i will update this.

                    Comment


                      Mate, as we discuss all issues here, I hope you don't mind me saying that you probably need to use some type of barrier cream to avoid getting a rather sore groin or undercarriage...

                      Would you contact your GP to be referred to the Continence Service? IDK if they supply products, but it's worth finding out, and they'll definitely know about barrier creams. 😘
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        think the nappies now are really absorbent so not as bad as when the kids used them as babies.. stephen hasnt had any problems though i am keeping an eye on him. im surprised how much these pants soak up. matthew likes his aloe vera cream which is probably just as good.

                        i just had to unblock the toilet. fun, fun, fun. used dishwasher crystals. dish washer has broken down so i thought might as well use them for something.
                        when i can think of something profound i will update this.

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                          I have a busy Monday in store. These are what I ordered apparently πŸ€—πŸ˜˜πŸ˜πŸ˜xx 61s6wA6r1SL._AC_SX425_.jpg
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            Good luck with them. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              matthew those are a pain to put on. you will really need help. its really hard pulling them behind and trying to attach the sticky bits to the front panel.

                              there are some that are elasticated on both sides and just pull on as pants. https://www.amazon.co.uk/Forma-Care-...ZP6GBZ2/ref=sr
                              these are so much better and you should be able to do these on your own.
                              when i can think of something profound i will update this.

                              Comment


                                matthew55 I think Ellie is right your GP can refer to continence service and all should be provided.
                                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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