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#United2EndMND - Your URGENT help needed

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    #31
    I sent off my email.

    Then I sent another email. I really sent an email if you get my drift. Well it was obviously noticed because I received a reply and they've asked to speak to me.

    When panic has left and I'm more composed I will agree to fit them into my busy time table. ๐Ÿ˜ณ

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      #32
      Brilliant Denise!

      Thank you.

      Hugs

      Doug x

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        #33
        Thanks Doug. I'm wearing my tassels ๐Ÿ˜˜

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          #34
          denise Wear your best frock and lippy, there may be photos. 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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            #35
            Didn't think I could be going into politics. Need to speak posh and get a handbag ๐Ÿคญ

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              #36
              To get to be an MP you need to finance yourself and your campaign for one year. That's why rich people are our politicians. It's better than working for a living. ๐Ÿ˜๐Ÿ˜€๐Ÿ˜ƒ๐Ÿ˜œxx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                #37
                Originally posted by denise View Post
                Need to speak posh and get a handbag
                True, that plastic Lidl reusable bag just won't cut the mustard. 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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                  #38
                  Possibly one from Waitrose?! Harrods foodhall? Have to ditch the accent. Jolly good show. Carry on. Chop chop.

                  Going to refer back to my email and make some notes. I honestly didn't think anyone would listen!

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                    #39
                    Was going to say a Fendi handbag but on second thoughts, stick with the Lidl bag, don't want to give the impression you're rolling in it...

                    Good luck with it denise 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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                      #40
                      Seriously if anyone has anything I could bring up. I'm going with lack of suitable housing, long wait for equipment and alterations.

                      Come on guys help me out while I have an opportunity. ๐Ÿ˜˜

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                        #41
                        Originally posted by denise View Post
                        Seriously if anyone has anything I could bring up. I'm going with lack of suitable housing, long wait for equipment and alterations.

                        Come on guys help me out while I have an opportunity. ๐Ÿ˜˜
                        Maybe quote Onein300 post?
                        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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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                          #42
                          Well done Denise..Go girl ! You will be just great!

                          I know funding for research is vital but like you i feel very strongly that home adaptations and equipment should be immediate following diagnosis. It should be unthinkable that people with a life limiting disease are not comfortable and safe.

                          I know our MP by sight as I used to work at the local school and he always replies to my emails. Its possibly because he's fed up of me !

                          Good Luck lovely xx๐Ÿ˜˜๐Ÿค—๐Ÿค—

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                            #43
                            Crikey, who'd choose to be an MP theses days...

                            RIP Sir David Amess.
                            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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                              #44
                              I know. Poor man. Our democracy is threatened.

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