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    My carers

    I'm loosing my two favourite male carers. Gutted. ☹️
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Oh no....that's horrible...😟...here's hoping their replacements turn out to be ok 😇
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      Sorry to hear that your carers are being stopped.So hard as you build up a relationship.
      Not sure why the carers are going but hope you can get replacement carers if needed.
      Best wishes
      Mary

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        #4
        New jobs, more money ☹️
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          All I'm left with is large women covered in tatoos ☹️
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Well it's better than nothing. 😯 tomorrow is another day ☺

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              #7
              Not sure if it's social services providing your carers Matthew....if so you could have a direct payment and employ them specifically or ask to be moved to the new agency they've gone to if it covers your area. Hard to get good carers so anything worth a shot🤷🏼‍♀️
              I know I keep saying this but it's worth having a social worker😇
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                #8
                Same agency same people just loosing my favourite people
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  Hope the new carers are as good as previous carers.
                  Best wishes
                  Mary

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                    #10
                    Sorry that you’re losing your favourite carers Mathew. I too hope that the new ones are good at their job and that you can become friends and/or have a laugh with them. Love Lynne x
                    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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                      #11
                      Sorry to hear that Matthew - I know how you feel, it's happened a few times to me.

                      🤞🤞🤞 that the new ones will be to your liking, but give them a chance, yeah!! 🤗🤗😘😘
                      ​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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                        #12
                        I need to think about carers but not exactly sure what we need. 😮

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                          #13
                          denise Write down what you do for Stephen from midnight until 23:59 that same day - don't leave anything out.

                          That will give you the material to give a care agency/social worker/etc sufficient good quality information, to allow them determine what level of care he needs and who can deliver it. 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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                            #14
                            Thanks Ellie great idea.

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