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    nurse here in half-hour
    good morning all
    It's all funny

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      Good morning. Waiting for carers to arrive to give me a long awaited shower yay. Partner and friends have made a cunning adaptation to the shower to facilitate it’s use whilst waiting for wet room conversion.
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        Morning gang....all good in the hood.

        Oh a pamper for you Rosemary6NT 🚿
        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. Well my cat howling and trying to knock the door down got me out of bed. Then the look of disdain - I'm not eating that! 🀨
          when i can think of something profound i will update this.

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            Originally posted by Rosemary6NT View Post
            Good morning. Waiting for carers to arrive to give me a long awaited shower yay. Partner and friends have made a cunning adaptation to the shower to facilitate it’s use whilst waiting for wet room conversion.
            Great Rosemary and great friends too 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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              🌞🌞🌞 G'day folks 😘😘 - and Happy Australia Day 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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                Rosemary6NT Hope you had a fabulous shower 😘
                ​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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                  come on then rosemary what did this cunning adaption look like. im intregued. that spelling looks odd. where is spell check when you want it!!
                  when i can think of something profound i will update this.

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                    I very much appreciated the shower but to be honest it was like going through a car wash πŸ˜‚πŸ˜³. All a bit rushed and wasn’t dried off very well. I must be more assertive πŸ€”
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      the car wash always frightened me. i have never driven through on my own. put your foot down demand fluffy towels. xx
                      when i can think of something profound i will update this.

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                        Originally posted by denise View Post
                        the car wash always frightened me. i have never driven through on my own. put your foot down demand fluffy towels. xx
                        πŸ˜† poor you having to hand wash your car! Fluffy towels it is!
                        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
                          I very much appreciated the shower but to be honest it was like going through a car wash πŸ˜‚πŸ˜³. All a bit rushed and wasn’t dried off very well. I must be more assertive πŸ€”
                          Might help to have it written down in your support/care plan...like the idiots guide to helping me have a shower...step by step...including drying thoroughly....😘
                          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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                            Rosemary6NT I have explicit instructions in my care plan but I also explained that, because I am so immobile, my various creases, between my toes and fingers, etc. must be thoroughly dry or I'll get sore and may lead to fungal infections - they got where I was coming from.

                            I always explain the reasoning behid my various idiosyncrasies 😏 just to prove that I'm not a Mega Diva... 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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                              Ellie LindaB thanks, you are right. Tbh it’s been a nightmare today with the carers.
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                                Good morning my wonderful company. Strange as it seems we hold great power as terminal people. We can eat, drink and imbibe whatever we fancy. The size of our coffin is not our problem init? βš°οΈ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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