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    #31
    Hi Lisa,

    Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

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

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      #32
      Thanks Barry

      I will let my sister know as she will be with mum at the hospital ect as I am too far away



      Originally posted by Barry52 View Post
      Hi Lisa,

      Don't forget to insist on the provision of a communication device for your mum. Just mention AAC which is the acronym for Augmentative and Alternative Communication. It can be a postcode lottery but the NHS are compelled to provide this.

      Best wishes,
      Barry

      Comment


        #33
        Hi Terry,

        Yes she does have a speech therapist I'm hoping she will get mum the app she need to help her communicating

        Thank you

        Originally posted by Terry View Post
        Hi VG;

        Sounds silly but can she email. It is one of the best things for some of us.

        Also, it's important that she has a Speech and language therapist, to help her get things.

        Hope all goes well on the 13th.

        Love Terry

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          #34
          I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

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            #35
            Oh , Didn't realise you could do both at the same time

            Originally posted by miranda View Post
            I skype my sons and grandsons. They talk, I type a reply. The screen tells them I'm typing so they know to wait before they speak again. Marvellous! Imagine how difficult it must have been a few years ago when none of this technology was available.

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              #36
              BARRY:
              I HAVE SENT YOU ANOTHER PRIVATE MESSAGE INQUIRY ABOUT IPREDICTABLE.

              Charles

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                #37
                Hi Charles;

                I have replied on another more ( I think) fitting forum.

                http://forum.mndassociation.org/show...ht=predictable

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                  #38
                  In a bit of a panic. I've been taking Riluzole for a month and had my first blood tests yesterday. At just before 6 tonight, the GP receptionist phoned to say the doctor wanted a telephone consultation with me next Tuesday afternoon after 2:30 to discuss the liver results. I asked if I could come in to the surgery and was told no and that the doctor would decide that after the telephone consultation. I now have the whole weekend to think about it. I must say my consultant and entire team have been absolutely fabulous but the GP hasn't shown an ounce of empathy and I would go as far as saying that he is totally disinterested. Sorry - I just had to get this off my chest.
                  Bern x

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                    #39
                    Not so nice to be told at 6 pm Friday Bern;

                    I guess if the results were really bad he would say stop taking riluzole now or reduce it to one tablet. Maybe try to see him face to face and make a list of any questions that might be relevant.

                    Good GP's are hard to find, mine is quite good but I did have an excellent one for just over a year.

                    Love Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      #40
                      Hi Bern,

                      How awful you've to wait more than 3 days worrying about the results - shame on your GP

                      It is important to have your liver enzymes measured while taking Riluzole, but one can only suppose your results might possibly be marginal, otherwise he would have advised you to stop taking it.

                      There's no call for him to leave you panicking for days if he doesn't intend to talk to you until Tuesday afternoon!!

                      Try not to worry.

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

                      Comment


                        #41
                        Thank you Terry and Ellie. Our son and daughter-in-law have just visited and think we should change GP. It's not nice to have the worry over the weekend. Imagine if people don't have family support or don't have the support of this forum.
                        Bern x

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