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    New member - first post

    Hi everyone,

    I was originally diagnosed with probable CIDP in October 2019. After nine months of tests and failed treatments, my neurologist changed my diagnosis to MND (ALS variant). This was confirmed by the specialist MND consultant last week. When I first got symptoms last summer I suspected MND, but was hoping that it wasn't, so I've sort of prepared myself for the news. Left arm pretty much useless, speech affected but still intelligible, slight weakness in right arm. Still able to walk reasonably well, although beginning to notice changes. Starting on the Riluzole tomorrow. I'm hoping to contribute something useful and gain lots of helpful advice from other members.

    Gary
    Each day is made easier with a bit of humour.

    #2
    Hello Gary , and welcome, it appears that you have had time to deal with the worse part of this illness - acceptance.
    Keep positive and do what ever you want whilst you can,
    s.
    As long as there’s golf and beer I’m happy

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      #3
      Hi Gary, you've come to the right place. Welcome aboard. 😊

      Comment


        #4
        Welcome to the Forum, Gary.

        You've had quite the diagnostic process, sorry your diagnosis is now ALS.

        Have you had contact with a Speech Therapist about communication Apps and aids?

        Love Ellie.



        ​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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          #5
          Originally posted by Ellie View Post

          .....
          Have you had contact with a Speech Therapist about communication Apps and aids?
          Thanks Ellie,

          MDT video call next Wednesday. I wish I'd banked my voice earlier. Just managed to get hold of a headset, all the good ones have gone due to Covid. I intend to have a go at Acapela but need to find out if it'll work with a Chromebook or Linux as I don't have Windows or Mac at the moment. I have recorded some simple messages on my phone, just because it was easy to do. I've been playing with the Speech Assistant app as well, but don't need to use it yet.

          Best wishes

          Gary
          Each day is made easier with a bit of humour.

          Comment


            #6
            GaryM It looks like you're out of luck - a quick search on the My Own Voice website yielded the following:

            "The MOV recorder application works on Windows (Windows 7, Windows 8 and Windows 10) and Mac OSX (10.9 and higher)"

            Unless anyone knows different??
            ​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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              #7
              Hi Gary

              I am in an area where they do not fund a speech therapist. My speech is difficult with pauses,slurring and problems with saying certain words with the letters L and R in.
              MNDAssociation have loaned me a laptop and headset with Acapela loaded. I recorded some of the 350 phrases and played them back. Other members wrote that Speakunique was a better programme as it has the ability to repair my voice of most if not all the slurring etc without eliminating the aspect of my voice that are special to me.
              I recorded the 300 phrases/ sentences and Speakunique produced 5 different versions of my voice. Myself and family were amazed that they could eliminate the.problems with my voice to such an extent that it sounded like me before MND started. They have several options dependant on the quality of your voice from repair to choosing a pre set voice. The MND Association have funded the cost of the final voice I have chosen. It may be that you can contact the MNDAssociation or your Speech Therapist to access this.

              Kevin

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                #8
                Sorry forgot to mention
                My Local area who don't have a speech therapist have asked a therapist from another medical area to help me and they are loaning me an IPad with Speakunique app and my voice recording loaded. Hope to receive it next week.

                Kevin

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                  #9
                  Whatever you decide to do you must do it asap. My voice has deteriorated in 9 months to almost mute but for the past four months no program would have been any good. Good hunting.

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                    #10
                    Hello and welcome Gary.

                    I also endorse the SpeakUnique program.

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

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                      #11
                      Originally posted by Ellie View Post
                      GaryM It looks like you're out of luck - a quick search on the My Own Voice website yielded the following:

                      "The MOV recorder application works on Windows (Windows 7, Windows 8 and Windows 10) and Mac OSX (10.9 and higher)"

                      Unless anyone knows different??
                      I had seen that Ellie, but haven't registered yet. Only got the headset yesterday. It wasn't obvious whether the application had to be downloaded or could just be used through a web browser. If I need to get a Windows laptop I'll wait and see what the SaLT says next week.


                      Kevin; Thanks for the info. I'll have a look at Speakunique.


                      Everyone else; thanks for all the supportive comments.

                      Gary
                      Each day is made easier with a bit of humour.

                      Comment


                        #12
                        Welcome Gary!

                        I've heard of speak unique and so i think that's what we'll try soon as his voice is starting to weaken now. Let us know how you get on.

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                          #13
                          hi gary
                          nice to meet you. my husband also needs to do something about his speech so will also have a look at Speakunique. i feel as though i am trying to push him into doing things because he just isnt facing the fact that he needs to do something - does that even make sense?

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                            #14
                            Denial is our strongest yet weakness defence. It's called being human. I want to be a dog! 😄x

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