Announcement

Collapse
No announcement yet.

Early Bird Club

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Good morning my fellow livers. Having MND/ASL diagnosed is like being in a trench in 1913 and being told you are going over the top. Into an unknown world with death your only end. But then you notice that we surround you. We can support you every step of the way. Togetherness is our secret weapon. 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

    Comment


      Good morning
      It's all funny

      Comment


        Morning all....Sunday vibes😎
        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


          Morning all. Well said Matthew, keep the metaphors flowing! Xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            Morning everyone. Is that your secret weapon Matthew that little gun? πŸ€­πŸ˜‰πŸ˜˜πŸ₯°
            when i can think of something profound i will update this.

            Comment


              Morning all 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


                Good morning all (just!)
                Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                Comment


                  G'day toute la monde 😘😘

                  Apparently it's less than 3 weeks until Christmas, so am freaking out about how little shopping I have done 😱😱😱
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    I'm thinking of changing my avatar to scrooge mcduck 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

                    Comment


                      Late this morning as I needed a shower
                      Good morning all
                      It's all funny

                      Comment


                        Good morning one and all. I have come to the conclusion that any time of day is silly o'clock for us. Lying down I have no worries about falling over, I can easily access both nostrils and perchance to dream. If I could answer the door, get my meds and set up my pump from my bed I would never get up! β›½πŸ›ŒπŸ‘πŸ€—xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                        Comment


                          Is there a scrooge macduff avatar?

                          Not so early this morning though only birds I've seen are seagulls. 🐦πŸ₯
                          when i can think of something profound i will update this.

                          Comment


                            Morning all...awake early but decided I refuse to get up in the dark....went back to sleep. Now ready to start the day.
                            Keep warm everyone...imagine those poor people still without powerβ„β„β„β„β„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.​​​​​​

                            Comment


                              Morning all. Off to hospital today to have PEG fitted tomorrow. Apprehensive as I'm a wimp and over the last few days have lost the ability to transfer independently. I wonder how things will work in hospital
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                              Comment


                                The operation is a breeze. They say sedation but I can't remember a thing after lying down. You will be fine. 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

                                Comment

                                Working...
                                X