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    #31
    I think they're a national company so they might cover your area Lynne K πŸ‘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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      #32
      That’s fantastic news Matthew. Do hope it works out well. I shall follow your experience closely as I await them sorting me out with a PA. 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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        #33
        Yes they've lots of offices Lynne K It's a big company so hopefully they'll offer services in your area 🀞🀞😘
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​
        • Likes 1

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          #34
          Ellie Thanks, I’ll look when I get the funds. Haven’t seen anybody about it yet 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.
          • Likes 1

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            #35
            Thanks Linda 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.
            • Likes 1

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              #36
              I'm not paying CIC is.
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
              • Likes 1

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                #37
                matthew55 I thought that Mathew. When I get CIC hopefully soon I’ll apply or the social worker assigned to me can apply for me. Did you apply yourself or what? 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.
                • Likes 1

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                  #38
                  I just looked at that care agency and put my area (Radcliffe) in a search box. Several a bit away from us came up. I went to all of their websites to see the areas covered and none of them cover our area. That’s a shame because they look amazingly good 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.

                  Comment

                    #39
                    Lynne K if you go to the CQC web site and put in your area....you'll find care agencies. If possible go for one rated outstanding. There aren't many but someπŸ‘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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                      #40
                      LindaB thanks Linda, can you remind me what CIC stands for please? Thanks 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.

                      Comment

                        #41
                        LindaB I looked at the CQC website and it was a bank of lots of information but not care agencies. If there’s a dedicated website that you’ve looked at can you please put a link here or send it to my email which you have, thanks 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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                          #42
                          Originally posted by matthew55 View Post
                          I'm not paying CIC is.
                          Originally posted by Lynne K View Post
                          Linda, can you remind me what CIC stands for please?
                          And me! I've never heard of CIC - maybe it's Council funded, rather than NHS funded? 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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                            #43
                            It was my Physiotherapist who sorted me out. Labels are for cans and bottles. Find the health professionals that goes the extra mile. They're gold dust. πŸ‘ŒπŸ˜πŸ˜˜πŸŒŸxx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
                            • Likes 1

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                              #44
                              Thanks Ellie and Mathew. Hopefully the social worker will visit urgently as I need help asap 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.
                              • Likes 1

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                                #45
                                Originally posted by matthew55 View Post
                                Labels are for cans and bottles.
                                It would be helpful to know what CIC is though, so others can push for such funded care - not everybody is as lucky as you are and has a brilliant HCP 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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