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    #1

    MND Smart

    I’ll back onto MND Smart. First appointment with another assessment on 5th October in Salford. Fingers crossed that my assessment is successful things time. Lynne
    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.
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    • 1 like
    #2
    Best wishes for it Lynne x

    Comment

      #3
      Thanks Gordan 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

        #4
        Good luck Lynne K keep us postedπŸ‘ŒπŸ‘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.​​​​​​

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          #5
          Thanks Linda, I will 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.
          • 1 like

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            #6
            🀞🀞 that you'll be accepted for the trial Lynne. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
            ​
            • 1 like

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              #7
              Good Luck Lynne. I've everything crossed for you x😘

              Comment

                #8
                Thanks Ellie and Deb 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

                  #9
                  It tastes like Sambuca

                  Comment

                    #10
                    Hi Lynne
                    I too started on the SMART trials, been given my placebo/traodone hydrochloride/mememtine hydrochloride 2.5 mls today after a pyschological assessment and bloods taken. First dosage tonight. I too am under Salford Royal if you want to share experiences; maybe we can support each other.
                    • 1 like

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                      #11
                      I appear to have been taken off the books by Salford and I have no idea why.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment

                        #12
                        Originally posted by Worsleybird View Post
                        First dosage tonight.
                        🀞🀞 for you Worsleybird xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                        ​

                        Comment

                          #13
                          Originally posted by Worsleybird View Post
                          Hi Lynne
                          I too started on the SMART trials, been given my placebo/traodone hydrochloride/mememtine hydrochloride 2.5 mls today after a pyschological assessment and bloods taken. First dosage tonight. I too am under Salford Royal if you want to share experiences; maybe we can support each other.
                          πŸ™πŸ™πŸ™ hoping for the best
                          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

                            #14
                            Following today's consultation with my MND consultant I hope to progress with participation in SMART trials.

                            Living in hopeπŸ™
                            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.​​​​​​
                            • 1 like

                            Comment

                              #15
                              Originally posted by LindaB View Post
                              Following today's consultation with my MND consultant I hope to progress with participation in SMART trials.

                              Living in hopeπŸ™
                              Oh good luck Linda, that sounds exciting!

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