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    Update

    Hi everyone I’ve not been on for a while, I’ve not been well with one thing or another and a few family illnesses 😒 plus living with all the adaptations 😬 but safe to say we are getting there at last πŸ‘
    Also would like to share some happy news with you all 😊 Phil and I are getting married on my birthday in February at home for obvious reasons πŸ™„ I think I’ve kept him waiting enough now 20yrs 🀣🀣 ❀️ Love Janette xx
    Janette x

    #2
    Congratulations Janette to you both. Really lovely happy news to read. I hope that the adaptions have now gone as well as you wanted and are pleased with everything. Just wanted to say am really pleased for you both. xx
    Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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      #3
      Oh wow Janette ! How romantic ! Big Congratulations to you both πŸ’•πŸ₯‚

      On a more practical note, so glad your home adaptations are taking shape ( at last !) XxπŸ€—πŸ˜˜

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        #4
        CongratulationsπŸΎπŸΎπŸ’˜
        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
          Zante Deb LindaB thank you all ❀️ Yes all adaptations nearly done just waiting for slings and the right shower chair and then I’ll get the full use out them, and just waiting for hoist downstairs also xx
          Janette x

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            #6
            Congratulations .We got married in February but almost 46 years ago!Hope you are enjoying planning your special day.

            Great news your adaptions are almost done too.It will make things a lot easier.
            Let us know how your wedding day plans are going..lovely news.
            Best wishes
            Mary x

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              #7
              Mary C Thank you ❀️ It will only be a low key affair as we’re having it at home so only our children and my best friend allowed πŸ™„ which is going to be hard as we have a big extended family. I don’t have to do anything apart from choose an outfit πŸ€— the kids are sorting everything else πŸ‘ the less fuss the better for me that’s why it’s took me so long πŸ˜‚πŸ˜‚ xx
              Janette x

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                #8
                Hi Janette, it sounds like the wedding is going to be just the way you want it.Great your kids are sorting the details.You can just concentrate on the parts of wedding that are important to you both and hope you find a nice outfit too.
                Something to look forward to.
                Mary x

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                  #9
                  Oh Janette, I am sooooooooooooo happy for you and Phil πŸ’žπŸ’˜πŸ’–

                  I got quite emotional and told my daughter, so I had to tell her all about the ramp, Voodoo Doll and adaptations too, she's delighted too and said it sounds very romantic (she's 18)

                  You've made my day
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                  .
                  ​

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                    #10
                    Oh thank you Ellie & daughter ❀️ One grandson said that grandads too old 🀣🀣 and another grandson said I thought you were already married 😊😊 It’s something to look forward to ❀️ Xx
                    Janette x

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                      #11
                      All the very best in the world. πŸŒπŸ€—πŸ˜β€οΈ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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                        #12
                        Thank you Matthew ❀️ Xx
                        Janette x

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                          #13
                          Lovely news Janette, though sorry to hear you've been ill. Roll on your adaptations being finished, mine are nearly too 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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                            #14
                            Thanks Heather ❀️ Hope your adaptations are soon finished too πŸ‘ Janette x
                            Janette x

                            Comment


                              #15
                              Nettie Is that a younger Janette in your profile pic?? 😚
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                              .
                              ​

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