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Reason to be cheerful πŸ’“πŸ’

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    Ellie thanks seems ages since I last went to respiratory appointmentπŸ‘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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      LindaB
      Good luck with respiratory appointment tomorrow.I have my appointment Thursday.Not looking forward to is as know things have deteriorated but maybe some suggestions might help.
      Mary x

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        Mary C & Ellie I cancelled....too icy β„β„β„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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          That's disappointing Linda, if you've not seen them for ages, but not worth the risk of a fall.
          Mary, hope your visit is useful.
          I don't seem to get appointments with respiratory team, I guess they are pretty busy with covid and winter ailments, but frill my lungs are the most dodgy of my symptoms. x
          Diagnosed July 2020, ALS bulbar onset.

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            Originally posted by LindaB View Post
            Ellie I cancelled....too icy β„β„β„πŸ˜‰
            Oh that's a shame LindaB but you're right to avoid risky pavements...

            Any idea if you'll have a long wait for it to be rescheduled? 😘
            ​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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              Heather R yes disappointing but hopefully they reschedule fairly soon. If I'm concerned about breathing I can speak to the respiratory nurse from the hospice team....as well as contact the team at the hospital.


              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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                Ellie not sure when the new appointment will be...πŸ€·πŸΌβ€β™€οΈxx
                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.​​​​​​

                Comment


                  Originally posted by Heather R View Post
                  I don't seem to get appointments with respiratory team, I guess they are pretty busy with covid and winter ailments, but frill my lungs are the most dodgy of my symptoms.
                  Heather, if you're at all concerned, or feel your symptoms have changed, do contact your MND Clinic or MND Nurse and don't feel you're any less important than a person with Covid or any other respiratory condition... πŸ€—πŸ˜˜
                  ​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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                    πŸ’–πŸ’–Christmas tree is up...the earliest ever!! Grandaughter took it down from the loft Saturday and my best friend added the baubles today. I just watched and supervised πŸ˜‚
                    Looks very pretty πŸ’–πŸ’–
                    πŸ€ΆπŸŽ…πŸŽ„
                    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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                      LindaB Only 26 more sleeps πŸŽ…πŸ€ΆπŸŽ„
                      ​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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                        26 sleeps....the question is have we been naughty or nice πŸ€ΆπŸŽ…πŸ˜‡πŸ˜ˆ
                        Attached Files
                        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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                          Is that the decorated tree Linda? Looks amazing πŸ‘πŸ‘πŸ˜˜
                          ​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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                            That's really lovely Linda.
                            Not sure where to put our tree this year as our house is in chaos. Study needs extending to create downstairs bedroom, so currently our beds are in the lounge. Lounge furniture is cluttering the kitchen/dining room. Not much space anywhere. Have to get creative!

                            Hope your appointment is rebooked soon xx

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                              Ellie yes that's the tree...I love it...far too big for my little apartment but what the heckπŸ˜‚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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                                Susie yes being creative I'm sure you'll think of something. I throw (might not be much of a throw this year) a fake green garland over the fireplace a few twinkly lights and hey presto ChristmasπŸŽ…πŸ€ΆπŸŽ„
                                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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