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    So sorry you've not had a good day Denise. Extra hugs πŸ€— x😘

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      Welcome to my world Denise. 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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        In my area carers can arrive either an hour before and up to an hour later than the agree time. So a 10am call could mean carer arriving anywhere between 9 & 11. I've complained a lot but no change.😟
        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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          Mine are the same. Some days feast, some famine. I pray for a PA. 😁😊😘😍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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            So disappointing when you are looking for something to ease the stress. This is one thing that puts me off having carers, I imagine the day will no longer be under my control x
            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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              Originally posted by Heather R View Post
              This is one thing that puts me off having carers, I imagine the day will no longer be under my control
              Heather, if you need carers, you need carers...

              Unless you have 24hr care, there is some degree of having to structure your day, that's true, but you still retain control over what happens with the carers.

              Yes, it's a huge change on so many levels. Yes, there'll be hiccups. Yes, it'll be challenging at times. But it will also mean you can get up, get showered, get dressed, get lippy applied and be able to live, not just exist.

              But, for me, having carers has definitely been life enhancing and I have met some truly lovely friends. 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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                Yes I am sure there are truly lovely carers out there, and that is a blessing. Certainly I feel that about some of the professionals visiting me now 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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                  looks like everyone is having a lie in this morning.
                  Good morning.
                  It's all funny

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                    Morning all....lovely start to the day...chilly but sunshine🌞🌞...perfect bonfire weatherπŸ”₯πŸ”₯πŸ”₯πŸ’₯πŸ’₯πŸ’₯
                    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 everyone chilly today with rain earlier . Have had to put the heating on 😳 certainly easier just flicking a switch than trying to get a log fire going πŸ€—πŸ˜˜πŸ₯°
                      when i can think of something profound i will update this.

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                        No lie in Keno, up 7.30. It is cold Linda xx
                        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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                          Good morning world xx

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                            Originally posted by Lynne K View Post
                            No lie in Keno, up 7.30. It is cold Linda xx
                            Yes cold and they are replacing three radiators tomorrow so heat will be off for a few hours
                            It's all funny

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                              Bonfire Nights once were known for hard frosts, when you could slide on frozen puddles, sign that winter had began.

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                                Gordan1111 & from my childhood...treacle toffee...Parkin cake....sparklers....πŸ’₯πŸ’₯πŸ”₯
                                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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