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Something to consider with voice banking

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    #1

    Something to consider with voice banking

    Hi

    I have recently been arranging the return of all the various equipment used by my darling Dean.

    I was reluctant to hand back his Gridbox immediately as I wanted to hear his voice for a bit longer. Too hard to get rid of all trace of him.

    The OT called to see how I was and to see if all of the big stuff had gone, hospital bed and wheelchair etc and I asked if I could get a copy of his voice.

    Apparently it is classed as a "digital legacy" and therefore unless specifically covered in his will it is not possible to transfer to anyone else. It isn't in his will as we hadn't considered it to be an asset.

    Something you may wish to consider - if it would provide comfort to your loved ones after you have gone.

    They have been very sympathetic, but the law is the law.

    They want to learn from this and will be advising future patients of the issue.

    Thanks
    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

    Sense of humour intact throughout.

    Sadly passed away peacefully 2/9/22
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    #2
    MMG Thanks for the heads up - I'm quite sure it's something the vast majority of people would never even think of. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user    .
    ​
    • 👍 1

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      #3
      MMG So sorry that you've not been able to retain Dean's voice, I'm sure this is something most people wouldn't be aware of so I hope they can learn from this and ensure people are aware going forward. It must be a difficult time, thinking of you x
      • 👍 1

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        #4
        Couldn't you have copied or recorded it before hand? Not that I understand what a grid box is but don't most systems back up so wouldn't there be a copy. Honestly what on earth do they think you would be doing with it? What a cruel world we live in at a time like this.

        Love and hugs and thanks for warning everyone xxx
        when i can think of something profound i will update this.

        Comment

          #5
          Originally posted by denise View Post
          Couldn't you have copied or recorded it before hand? Not that I understand what a grid box is but don't most systems back up so wouldn't there be a copy. Honestly what on earth do they think you would be doing with it? What a cruel world we live in at a time like this.

          Love and hugs and thanks for warning everyone xxx
          We have copied some phrases and they have allowed time to do that fortunately. They have been sympathetic.
          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

          Sense of humour intact throughout.

          Sadly passed away peacefully 2/9/22
          • 👍 4

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            #6
            MMG what a thing to be denied you, especially at this difficult time for you. I have heard of people without MND who have kept voice messages on the answer machine of their departed loved ones, so it does seem unfair. But thanks for the warning. Sending love and hugs to you xx
            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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