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    #16
    Ah rats!! Was hoping he'd shamed himself into keeping dry...

    Would he use a bottle if one was left within reach? If not, maybe get some Conveens - you've enough to do as it is. 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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      #17
      I don't think he knows shame Ellie. Yeah I'm going into pharmacy soon so I'm going to ask.

      his hands are useless so he wouldn't be able to pick a bottle up or put it down. 😩
      when i can think of something profound i will update this.

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        #18
        This has all started up again. Had a break for about a week now it's happening again. Can't think what has changed.

        😭
        when i can think of something profound i will update this.

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          #19
          Arrgh! Sorry Denise...

          No extra fluids, later time of drinking, more alcohol that you can think of? 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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            #20
            Sorry that your back on the wet bed treadmill. I hope that Ellie‘s suggestion about a conveen is ok with him. Cooperation is required isn’t it. Good luck at this pharmacy and having that conversation at home, Lynne 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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              #21
              It never stopped but the diapers soaked it up.

              Now even though I've used diapers with extra pads inside and absorbent sheets everything is flooded.

              no alcohol and no extra caffeine.

              I've ordered some non disposable absorbent bedding.

              Do I take it that some things available on Amazon require a catheter to be fitted then piping is attached. I've looked at the condom style but will it stay put? Honestly if I had a gun I would not be responsible.

              😭
              when i can think of something profound i will update this.

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                #22
                Have you not been referred to NIGHTINGALE NURSE ?
                legs ‘gone’, urgency, GP , Continence Nurse & Nightingale service

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                  #23
                  I'm in Portugal
                  when i can think of something profound i will update this.

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                    #24
                    Originally posted by denise View Post
                    It never stopped but the diapers soaked it up.

                    Now even though I've used diapers with extra pads inside and absorbent sheets everything is flooded.

                    no alcohol and no extra caffeine.

                    I've ordered some non disposable absorbent bedding.

                    Do I take it that some things available on Amazon require a catheter to be fitted then piping is attached. I've looked at the condom style but will it stay put? Honestly if I had a gun I would not be responsible.

                    😭
                    The condom/conveen style do stay put...from my experience in a former life as a carer. Good luck 👍
                    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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                      #25
                      Thanks Linda. I've got to try something.
                      xx
                      when i can think of something profound i will update this.

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                        #26
                        My sympathies are with you Denise, my perverse humour is thinking Bulldog clip or cable ties, but thats wholly inappropriate so I shan't go there

                        Richard
                        Richard

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                          #27
                          So sorry you have this extra problem now, Denise, I wish I could suggest something else you could do, you are so unsupported out there. Sending hugs xx
                          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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                            #28
                            I'm getting free samples sent. So awaiting arrival. Thing is he's peeing for England (bigger population than Portugal) will these things hold much?

                            he's peeing more during the day now.

                            I looked up incontinence and it lists neurological problems and lists ALS. But on further investigation it says more likely in 70s age group but then it could be argued more likely to happen at that age anyway.

                            anyone had a catheter fitted?

                            😩
                            when i can think of something profound i will update this.

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                              #29
                              denise Prostate issue maybe? Did they take bloods to test too?

                              Glad you're ggetting those samples. 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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                                #30
                                No tests. Told it was an age thing.
                                😟
                                when i can think of something profound i will update this.

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