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    Originally posted by Doug Carpenter View Post
    Are your Nippy batteries ok Ellie?
    Aww thanks Sweetie 😘😘

    Yes, both are fully charged, I have a spare one, as well as the integral battery. 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 day all xx

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        Good morning
        Just showed so need a rest now
        It's all funny

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          Good morning. After the night from hell I hope for a better day. Despite vipers in the nest.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            Morning everyone. Suns out here. Not a bad night.
            what are nippy batteries?
            when i can think of something profound i will update this.

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              Morning everyone πŸ™ˆπŸ™‰πŸ™Š
              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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                Morning all. Sorry to hear about your vipers and hell, Matthew, do you want to elaborate? 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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                  Morning all, showered, dressed and sat on my RR chair as always by now.

                  Sorry that you had a bad night Mathew, and that you have a good day with plenty of naps.

                  Clinic today at 4pm so leaving around 2.45. Have to allow half an hour for parking. I’m going to ask my neurologist to chase my appointment with Wythenshaw as want that feeding tube and suprapubic catheter pretty soon xx
                  Last edited by Lynne K; 8 December 2021, 09:59.
                  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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                    Happy Windsday one and all 😘😘😘
                    ​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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                      Originally posted by denise View Post
                      what are nippy batteries?
                      No secret code 😍 Nippy is the brand name of my NIV machine, Doug's too 😘
                      ​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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                        Sorry posting on this thread but easier than finding my original,

                        A letter came from Wythenshaw just now for outpatient s Wednesday 12th January 1pm. Don’t know if it’s a follow up for the cough assistance machine that they loaned me about 12 months ago or it’s for my other procedures. Fingers crossed that they can at least find out for me xx
                        Last edited by Lynne K; 8 December 2021, 12:02.
                        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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                          Hello everyone. A busy few days. Physio this morning xx

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                            Originally posted by Gordan1111 View Post
                            Hello everyone. A busy few days. Physio this morning xx
                            Does the Physio come to you Gordan or you go to them?

                            I hope it was worthwhile. 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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                              Hi Ellie - I made it to physio dept today - but suspect that will be 1off. Getting very wobbly! xx

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                                Good morning my fellow suffers. It is understandable to fear the unknown, even the known. But being Terminal gives us an opportunity that healthy people don't get. We know how precious time is and can live life to the full every day as if it were our last. For us it really could be. πŸ˜‰πŸ˜πŸ˜πŸ€—
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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