Announcement

Collapse
No announcement yet.

In the Club!

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

    In the Club!

    Got my "oxygen warning" wrist band today. Wearing it proudly.
    You do not have permission to view this gallery.
    This gallery has 1 photos.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

    #2
    Rocking it Eddie, blue is your colour 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.

    ​

    Comment


      #3
      I thought you meant you were pregnant! 🀣
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        I had one for Stephen but the writing faded away.
        when i can think of something profound i will update this.

        Comment


          #5
          WheelsOfSteel now you're really in the gang....🀘🏻
          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.​​​​​​

          Comment


            #6
            Originally posted by denise View Post
            I had one for Stephen but the writing faded away.
            Sounds like a cue for the Stones (Or Buddy Holiday) and β€˜Not fade away’. Well as you expect ….. β€˜ I’m going to tell you how it’s going to be ………’
            Richard

            Comment


              #7
              I'm singing along. Dancing and giving it my Jagger impersonation. Frightened my cats they are now under the floor boards. πŸ™
              when i can think of something profound i will update this.

              Comment


                #8
                Eddie, I’ve had one for about eighteen months and been wearing it since x
                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


                  #9
                  Oooh, how do you get one of those?? Feeling deprived!

                  Comment


                    #10
                    Rosemary6NT They're available from MND Connect.

                    MNDConnect The link to order the MND Alert Wristband is missing from the page on the main website, as you can see:

                    "MND Alert Wristband

                    A wristband you can wear at all times to alert medical staff that you have MND. The band includes an oxygen caution alert and a web link for professionals. Order the wristband from our MND Connect helpline using this link."

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

                    ​

                    Comment


                      #11
                      Thanks Ellie I'll have a look in to the missing link and have it fixed.

                      Rosemary6NT If you would like an alert wristband then please send me a private message or email us at [email protected] and we'll get one sent out for you.

                      Best Wishes

                      Rachel

                      MND Connect Adviser
                      MND Connect
                      Contact us on 0808 802 6262 or at [email protected]

                      Comment


                        #12
                        Ellie and MNDConnect thank you

                        Comment


                          #13
                          Mines in the post! 😁😁😁😁xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            #14
                            It's just arrived! πŸ˜€πŸ˜ŽπŸ€—πŸ‘xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              I'm wearing mine after being given oxygen for my PEG operation. I queried it at the time, but was told, no, oxygen is good! Afterwards when I queried it with my respiratory physio, she said it was okay because I was being "monitored". I am still a bit sceptical about this, having felt so ill immediately after the op. I would like to better understand when it may be okay to use oxygen x
                              Diagnosed July 2020, ALS bulbar onset.

                              Comment

                              Working...
                              X