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    Commend

    A Randomised Controlled Trial of Acceptance and Commitment Therapy for people with motor neuron disease (COMMEND)
    I am about to start this research trial, has anyone else been invited?
    This trial has been funded by the National Institute for Health Research.
    This follows on from a previous study where they adapted a new form of psychological therapy called Acceptance and Commitment Therapy for people with motor neuron disease (MND).
    The purpose of this trial is to see how adding this therapy to usual care compares to usual care alone.
    My wife and caregiver is also taking part.

    So far it has been done by phone and online, and consists (so far) about how I feel about myself.
    Should be interesting, as long as I don't end being commited
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    #2
    Hi Beemer

    Good to hear you're taking part in the trial.

    Barry, Andy and I are lay members of the steering group.

    Do let us know how you get on.

    Doug

    Comment


      #3
      Hi Beemer,

      I hope you and your wife find benefits from this trial. As Doug says it will be good to hear how you get on.

      Best wishes
      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Very interested in trials, emotional support is vital in coping.
        I believe as a long time carer (14 years dementia parents and now 6 months MND - husband)
        Support for the cycling of grief, and mixed emotions.

        Person with the illness and carer need outside emotional support in my opintion

        Well done for taking part.

        Campaigning and taking part in research for many people, give a sense of purpose and hope

        I took part in this for dementia and supported mum to do in the field of dementia.

        It all helps to gather information and push knowledge and research forward

        Comment


          #5
          They should ask me. Billy no mates 😂x

          Comment


            #6
            Originally posted by matthew55 View Post
            They should ask me. Billy no mates 😂x
            Hi Matthew,

            This trial is only available in certain MND care centres and they hope to extend it once they recruit more volunteers and trained professionals. I would ask if your neurologist is aware of the trial and if it is available in your area.

            Best wishes,
            Barry
            I’m going to do this even if it kills me!

            Comment


              #7
              Thanks Barry, I forgot to ask last time but not the next thanks to you 🤗

              Comment


                #8
                Hi Matthew

                Here's a link:

                https://www.ucl.ac.uk/psychiatry/res...ojects/commend

                Doug

                Comment


                  #9
                  People making money out of people who can't fight back. Sorry but I have a low opinion of so called do gooders. x

                  Comment


                    #10
                    Hi Beemer

                    i have volunteered for this x

                    Comment


                      #11
                      I have just opted out after just 5 weeks,
                      I found the whole thing quite depressing, being constantly asked how did that make you feel, type questions.
                      The psychologist was a very nice lady, but I did not want to keep thinking about how life has changed so dramatically for me this year.
                      Maybe I did not give it a chance, but the process upset me, and I did not want that.
                      Diagnosed 2nd Jan 2020
                      Both arms/shoulders affected, left worse than right.
                      Progressive Muscular Atrophy suspected

                      Comment


                        #12
                        Originally posted by Beemer View Post
                        ... the process upset me, and I did not want that.
                        Who would??!! You did the right thing - living with an MND is upsetting enough without it being added to.

                        Did you give feedback or were you asked as to why you pulled out?

                        Love Ellie.

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

                        Comment


                          #13
                          Hi Beemer,

                          I’m sorry to hear that this trial has caused you distress. As Ellie has said the administers of the project would appreciate feedback so they can make adjustments.

                          Best wishes,
                          Barry
                          I’m going to do this even if it kills me!

                          Comment


                            #14
                            Hi Beemer Ive done a few of these, not anymore .just my opinion . A waste of valuable time.

                            Comment


                              #15
                              I was not asked why I pulled out of Commend, but I would of let them know if asked.
                              I have been asked if I am interested in assisting with research into upper limb support, something that I am really interested in. No idea yet when or if it will happen with the current Covid restrictions.
                              Diagnosed 2nd Jan 2020
                              Both arms/shoulders affected, left worse than right.
                              Progressive Muscular Atrophy suspected

                              Comment

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