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    Good news!

    The good news is that my new carers are BRILLIANT. I get the same two every morning for 90mins and lunch 60mins, which gives them plenty of time to shower, commode, PEG feed, medicate and anything else. They move and dress me confidently and gently and all with good humour and engagement. I cried with gratitude this morning. I hope I get to keep them and they are not switched out.
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    oh rosemary that is wonderful. I am so very happy for you.
    πŸ’•πŸ˜˜
    when i can think of something profound i will update this.

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      #3
      Originally posted by denise View Post
      oh rosemary that is wonderful. I am so very happy for you.
      πŸ’•πŸ˜˜
      Thank you Denise xx
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #4
        Rosemary6NT great news...πŸ˜˜πŸ‘πŸ»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.​​​​​​

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          #5
          Fantastic news, good for you. 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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            #6
            That is good news.
            Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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              #7
              Oh Rosemary, you don't know how thrilled I am to hear that - you must be so relieved, hence the happy tears.

              Originally posted by Rosemary6NT View Post
              I get the same two every morning for 90mins and lunch 60mins, which gives them plenty of time to shower, commode, PEG feed, medicate and anything else.
              That's more like it πŸ‘πŸ‘ From the moment my carers step into my house every morning until I'm sat showered, dressed, meds given and ready for my precious daily coffee, takes about 75mins.

              I'm half tempted not to say this but... 😬 in time, you will need more than the two (brilliant) carers for holidays, sick leave etc., and it's best if cover carers are trained in by one, or both, of those carers.

              I hope this will give you a boost. 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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                #8
                Fantastic news xx
                Diagnosed May 2021 bulbar onset als.

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                  #9
                  So glad for you Rosemary, amazing how they can vary! 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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                    #10
                    Wonderful news Rosemary
                    Richard

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                      #11
                      Rosemary6NT - fantastic news. Absolutely thrilled, it must be such a relief. Would do a happy dance but home alone and that really wouldn't end well.

                      I have my job adverts out today for personal assistants, so this gives me hope I will also be fortunate 🀞
                      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                        #12
                        Great news.so pleased for you xx

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                          #13
                          That is excellent. Always heartening to read good news on here.

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                            #14
                            Rosemary6NT so very happy for you, don't blame you shedding a few tears, it's such a crucial part of our lives ❀
                            Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                              #15
                              Thats great news

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