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    Glad that your catheter works for giving you a better nights sleep Mathew. I received my appointment for the Urology Clinic at Salford (7th September) at last. Fingers crossed for something happening fast after this. 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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      Originally posted by matthew55 View Post
      Speak softly but I may have cracked it. 6 and 1/2 hours of uninterrupted sleep with a 90% full 750 mil catheter bag.
      That'll set you up well for the day. πŸ‘πŸ‘

      Get a 1000ml bag and aim for a 7hr+ sleep without stressing about leaks?? 😘😘
      ​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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        Getting into bed last night it was a mere 18 degrees and, for the first night in a while, I didn't wake up with air hunger - happy days (nights) πŸ‘πŸ˜ŠπŸ˜Š
        ​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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          Smashing Ellie, love 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.

          Comment


            Thanks Lynne - I was beginning to dread going to bed 😏 😘
            ​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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              Soo glad you're more comfortable in bed Ellie πŸ™‚ πŸ’€ Cooler weather is forecast to continue xxx

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                Thanks Deb I used to love the heat 😏 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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                  Good morning Universe. U2 had it right: 'Sunday Bloody Sunday'. In my previous life Sunday was the day I looked forward to the most. Now it's the worst day of the week. MND takes more than anyone realises.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    I have to think what day it is.

                    I was a bit chilly last night. Christmas is coming πŸ˜‰
                    when i can think of something profound i will update this.

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                      matthew55 πŸ€”I wonder what makes Sunday the worst day Matthew?
                      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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                        Doctors, chemist and many other places are closed. Unable to eat Sunday roast or cooked breakfast. Can't drink beer or wine. The list goes on. β˜ΉοΈ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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                          Oh Matthew that's a lot to miss...I get why now... all the traditional Sunday stuff πŸ˜•πŸ˜ž
                          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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                            7am and decidedly chilly out there. Morning early birds. Need to get the virtual pole out again and get some exercise. πŸ˜‰
                            when i can think of something profound i will update this.

                            Comment


                              Awake at 4am to sounds of dog thrashing around in her bed... then all eerily quiet, couldn't hear her breathing or snoring. I had the terrible thought the dog had died and didn't want to get up to find out... When I eventually did look, she had simply moved into the cooler hallway, so I didn't hear her there. I can't forget the awful quiet and horrible lonely feeling I felt... I know she is getting older, I had to carry her a bit to get to the dog waste bin, to put her poop in, as she didn't want to walk the full length of the street to get there last night. She struggles getting up the steps into the garden, and doesn't leap around the furniture like she used to. She's 14 now, so, not doing bad. How do our doggy companions worm their way so deep into our hearts?

                              Anyway. Another morning, so, I should have said 'Gooday folks!' xxx
                              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                                Pets do that. Gets me they sleep all day then come night time I can hear George and Milly running round. Find they've pulled up the wiring in the hall and think making the door stop make a lovely ponging sound is the best thing ever. Chrissy my big cat feels it's time to chase cat toys round the bedroom. She likes me to used the electric lift for Stephens mattress then vanish under the bed. One day there will be a squashed cat.

                                I swore that when my two old dogs died I wouldn't replace them. Then when our youngest died unexpectedly that we wouldn't have anymore. I took in a stray cat. Then her son after he was hit by a car. Until i ended up bringing back 9 from Portugal. 3 are mine. 3 going to a lovely lady on Dartmoor. 2 to my son a youngster to another lady. The ones I've left behind haunt me.

                                animals just do that to most of us. I do still yearn for a dog but think I have enough to contend with.

                                when it goes quiet and I don't know what they are up to is the worst. πŸ€”
                                when i can think of something profound i will update this.

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