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    Commend trial

    I am taking part in this new trial. I find it very interesting that trials do not always have to be about medication. Its about acceptance and commitment therapy. The mental side is so so important for both the patient and loved ones.
    https://www.mndassociation.org/resea...tment-therapy/
    Diagnosed May 2021 bulbar onset als.

    #2
    Hope you find it useful Shelly - as we all know, half our battle is in our heads, if that's strong, life can look so much different. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Ellie so true. Hopefully I will be lucky and be in the trial getting 8 therapy sessions. X
      Diagnosed May 2021 bulbar onset als.

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        #4
        shelly21

        I asked to go on the Commend Trial and then got randomized for normal treatment. I was not at all happy and so far the sessions have been by video call. I gave up last week and asked for them to be face to face. Hope you fare better x
        Diagnosed 3rd November 2021 Bulbar Onset

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          #5
          GillB thats not great. I don't have any therapy at all. I was led to believe if successful you had the video therapy sessions and if not carried on with your normal care.

          Was it the video calls that you found hard? My speech is still just about audible. X
          Diagnosed May 2021 bulbar onset als.

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            #6
            shelly21

            It was more the technology. Last two have been a disaster as there was no sound from her on the first one and the second one two of me appeared and we couldn't sort it. This resulted in her ringing me on the landline and me answering on my IPad

            To be honest I got so frustrated as it is impossible to build up a relationship on a video call.
            Diagnosed 3rd November 2021 Bulbar Onset

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              #7
              GillB That is why I gave up my initial counselling because it was via zoom and always technical problems.

              I will not build my hopes up.

              Thanks for the update x
              Diagnosed May 2021 bulbar onset als.

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