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ALS: Weakness in arms

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    #16
    Hi Doug,

    Thank you for your comments about COMMEND. When I looked on the website earlier today it seemed to say that they are not recruiting at the moment. The recruitment it mentioned was for something in 2018.
    Dina

    Trying to keep positive, but not always managing.

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      #17
      Hi Dina,

      As Doug mentioned the trial is going well. They are training more therapists and recruiting more clinics so it is likely they will need more patients during the next 12 months.

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

      Comment


        #18
        Good morning,

        Originally posted by Doug Carpenter View Post
        Andy, Barry and I are involved in various of the committees overseeing it
        Ah! Putting forum identities, together with voices from yesterday's meeting!

        It sounds like 1 of the centres is already recruiting but said, I think it will take a couple of months or so before the trial starts - but well worth registering with your care centre - which one you registered out so we can check if the trial is going ahead there?

        Indeed, you asking might persuade them to go ahead with finding the money to be involved with it

        Warmly

        Andy
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

        "Things turn out the best for people who make the best of the way things turn out"

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          #19
          Hi Andy,

          My MND centre is the Salford/Manchester one at Salford Royal Hospital.
          Dina

          Trying to keep positive, but not always managing.

          Comment


            #20
            Hi Dina,

            I’m sorry that Salford is not one of the centres involved with this trial but as Andy has said it is being rolled out and those units that have committed resources to this trial are being supported. Training suitable therapists is an ongoing problem.

            Andy,

            As you have mentioned it is not always easy to make the connection with forum members and those who are involved in steering groups especially when we have Skype links, telecommunications and face to face meetings.

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

            Comment


              #21
              Hi Barry,

              Thank you for checking.
              Dina

              Trying to keep positive, but not always managing.

              Comment

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