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    Update

    Just an update, Phil has been very poorly over Christmas and new year and trying to get seen by a doctor was nigh on impossible but finally managed to get an appointment this morning and he thinks he’s got Polymyalgia Rheumatica and started him on steroids so hopefully he will start to get better soon πŸ™πŸ» It’s been a very difficult time for us both πŸ€¦πŸΌβ€β™€οΈ
    Got emergency carers in and got the ball rolling on a CHC plan, so hopefully things should get easier for both of us πŸ‘ love Janette xx
    Janette x

    #2
    Originally posted by Nettie View Post
    Just an update, Phil has been very poorly over Christmas and new year and trying to get seen by a doctor was nigh on impossible but finally managed to get an appointment this morning and he thinks he’s got Polymyalgia Rheumatica and started him on steroids so hopefully he will start to get better soon πŸ™πŸ» It’s been a very difficult time for us both πŸ€¦πŸΌβ€β™€οΈ
    Got emergency carers in and got the ball rolling on a CHC plan, so hopefully things should get easier for both of us πŸ‘ love Janette xx
    Sounds good Janette, love Lynne 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


      #3
      Nettie hope Phil feels better soon. A very tough time....but improving now you'll have supportπŸ™
      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.​​​​​​

      Comment


        #4
        Best of the best Janette. 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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          #5
          Thank you all β™₯️ Xx
          Janette x

          Comment


            #6
            Sorry you've both had such a miserable few weeks Janette and Phil.

            I'm sure the steroids will work their magic pretty quickly and Phil will be turning cartwheels again - or, at least that he'll be able to get up off the sofa 😏

            Good luck with the CHC and, if you're being assessed, no bravodo in answering the questions, answer for how you'd be at your most tired and fraught day (of which you've had a few lately...) 😘😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #7
              Hi Ellie, yes things gave been tough, but I need him back to his old self πŸ€— Already been assessed she did say I might not qualify πŸ€¦πŸΌβ€β™€οΈ so fingers crossed 🀞🏻
              He’s been sleeping in my recliner at night and sitting in my wheelchair by day 😬 love Janette xx
              Janette x

              Comment


                #8
                Originally posted by Nettie View Post
                Already been assessed she did say I might not qualify
                If it's rejected, appeal. xx

                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  Yes she said we could appeal if needed πŸ‘ hopefully we won’t have to x
                  Janette x

                  Comment


                    #10
                    Oh Janette, im so sorry you're both having such a terrible time. I really empathise with how scary it must be and how vulnerable you feel.

                    I have everything crossed that you get CHC and that Phil feels better soon.

                    Love and hugs to you xxπŸ˜˜πŸ€—

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                      #11
                      Thank you Deb πŸ₯° xx
                      Janette x

                      Comment


                        #12
                        Fingers crossed for you both all round, Janette x
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                        Comment


                          #13
                          Originally posted by Heather R View Post
                          Fingers crossed for you both all round, Janette x
                          Thanks Heather, Phil is feeling slightly better today 😊 Janette x
                          Janette x

                          Comment


                            #14
                            Originally posted by Nettie View Post
                            Phil is feeling slightly better today
                            That's great news Janette, has he long more to go on the steroids? xx

                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              #15
                              Please pass on to Phil. Feel better soon mate. πŸ‘βœŒοΈπŸ»πŸ˜œxx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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