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    Morning all....I'm an early bird for sure....have the best day all๐Ÿ˜Š

    Now for wordleโ˜•

    Rosemary6NT hope today is better with carers๐Ÿ˜˜
    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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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      Good morning all
      coffee before showering this morning
      It's all funny

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        Linda and her wordle. My brain has forgotten how to spell.

        I loved car cleaning in Portugal using the hose pipes and brushes that was brilliant especially on a hot day. Stephen said he didnt mean to spray me but I'm sure he did. It was great fun but to be done after shopping and eating otherwise I looked like I'd just fallen in the river. ๐Ÿ˜‚
        when i can think of something profound i will update this.

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          Rosemary6NT hoping today is a better day for you both 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 on a cold miserable day in Radcliffe. Going to the Bury Hospice for 2pm for reflexology. Not really what I wanted but the only thing that they offer 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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              Helloooo everybody ๐ŸŒž๐ŸŒž๐Ÿ˜˜๐Ÿ˜˜

              Enjoy your afternoon Lynne K xx
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

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                Ellie managed to get in while it was still morning. Just!
                when i can think of something profound i will update this.

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                  Originally posted by denise View Post
                  Ellie managed to get in while it was still morning. Just!
                  Whaddya mean just - I'd a whopping 8mins to spare ๐Ÿ˜‹๐Ÿ˜˜
                  โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  โ€‹

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                    My broomstick is obviously faster than yours ๐Ÿคฃ๐Ÿ˜‚๐Ÿง™โ€โ™€๏ธ
                    when i can think of something profound i will update this.

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                      Rosemary6NT how was the shower today....hopefully better๐Ÿšฟ๐Ÿ˜˜
                      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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                        Originally posted by LindaB View Post
                        Rosemary6NT how was the shower today....hopefully better๐Ÿšฟ๐Ÿ˜˜
                        No shower today, other things got in the way. Had trouble with the toileting sling last night so had the OT and carers supervisor out today. OT has ordered a better sling. Iโ€™m still not happy with the carers, they are very rough with wiping and drying making me sore. They donโ€™t clear up before rushing off, leaving commode unemptied, loo not flushed, used towels dumped with clean ones etc. โ˜น๏ธ
                        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                          Originally posted by Rosemary6NT View Post
                          Iโ€™m still not happy with the carers, they are very rough with wiping and drying making me sore. They donโ€™t clear up before rushing off, leaving commode unemptied, loo not flushed, used towels dumped with clean ones etc. โ˜น๏ธ
                          That needs to be nipped in the bud, it's unacceptable.

                          Can you get the supervisor back for a chat? Is it a timing issue too, my carers take about 50mins from when they arrive to get me up, showered, dried and dressed, and they know exactly what they're doing, so is one hour very tight for a new team to get you up and ready? xx
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

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                            Rosemary6NT I agree with Ellie's comments totally unacceptable from carers. The only way they will improve is if you're able to voice your dissatisfaction which I'm sure you will.

                            Its basic good practice to clean as you go and leave the bathroom etc in good order๐Ÿ˜ก

                            Is it two carers that attend together?

                            So sorry it's off to such a rocky start....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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                              Good morning all
                              got stuck in bed and my brother had to drive 4 miles to get me out at 4 am
                              ordering a car rug and will sleep in my RR chair for now.
                              coffee
                              It's all funny

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                                Morning. Contemplating getting up but that's all. Its nice and warm in bed.
                                ๐Ÿ˜˜
                                when i can think of something profound i will update this.

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