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Devastated but trying to stay strong

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    Devastated but trying to stay strong

    Two days ago my lovely wife Valerie was diagnosed, following several months with minor speech difficulty. She is only 66; we have been married 46 years. We are still in shock but have been told now is the time to bank her voice, can anyone recommend the best software or how we go about this. We have iPhones and Mac tablets/computers and are both familiar with them. Thank you. David

    #2
    Hi David
    So sorry about Valeries diagnosis .You will get lots of support from forum members.
    Its wise to do voice banking ASAP.I got myself referred to Speech and language team( SALT).Referral can be done by anyone in the health team who will support you both.( hospice team. Community palliative care team, MND nurse)
    Then they led me through the voice banking process including loaning any equipment needed.So glad I did that early on as my voice is weak now..15 months post diagnosis.
    Then thats all done for if and when Valerie needs it.
    Keep strong
    Mary

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      #3
      Hi David. I’m sorry about your poor wife Valerie’s diagnosis. I did voice banking with Modeltalker (a US company) and then downloaded to Predictable. What a marathon. I’ve written about this before so you could search my previous messages about this. Others have done voice banking with other companies. You’ll most likely get messages from some of these too.

      Didn’t Valerie’s speech and language specialist say which voice banking company to use? They told me Modeltalker because it’s compatible with all of their technological voice aids. So I didn’t have a choice really and getting an adequate sounding accent wad challenging to say the least.

      Good luck, Lynne x
      Last edited by Lynne K; 15 September 2021, 10:05.
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.

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        #4
        Welcome David. It's all a bit much to take in at first. Small steps are the way forward and we have all been where you currently are so ask anything. Stay Strong and Stay sane. 👍🤗🙏😍xx
        ​​​​​
        ​​​​​
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          dlbuk so sorry to hear you wife's news...nothing prepares us for that diagnosis. Glad you're here in the forum....a great space with great people.
          MNDA have been great regarding voice banking and loaned me a lap top & and paid for the Predictable App. (Games Store). My SALT nurse has been a great help as she liaised with MND & Acapela (the voice banking company).
          it's not straightforward (well not for me) the Acapela part links into the predictable app....I've been sent a list of instructions that would confuse a Nasa scientist....so I'll call upon my SALT nurse again.
          As others have said I would start from a SALT nurse....mine from a community Neuro team.

          Good luck 👍😉
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            Hello David. Salt team should advise - and and on kit (Mdna may fund.) I used acapela. Love to you and wife. xx

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              #7
              dlbuk A warm welcome to the forum David, and also to Valerie, whom you obviously adore 💕

              The MNDA have a useful info sheet on voice banking, which can be found here

              Feel free to ask us any questions or just log on for company, support and join in the bantz 😍

              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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                #8
                Thank you all so much for your lovely responses.

                Comment


                  #9
                  LindaB
                  Hi Linda, I also have predictable app all ready for when I need to use it on iPad and mobile phone.I have poor IT skills so don’t know how to use some functions.

                  Just discovered on google a site called therapy box which has the instructions on there for predictable 6...it might be useful for you too?
                  Best wishes
                  Mary

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                    #10
                    Mary C thanks for that. In Google play store the predictable app comes under Therapy Box. So that's interesting. I have an e-mail from Acapela detailed instructions but I'll leave it to a better brain than mine. I'm frightened to mess up the predictable app at £159...I'd hate to lose it🙄😒
                    I'm sure we'll both get the hang of it....once the 2 apps are linked. My voice is increasingly limited😒😘😘
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                    Comment


                      #11
                      A warm welcome to our forum David. I am so sorry for Valerie's diagnosis.

                      The early days are so overwhelming and scary but in a funny way life does get better as you come to terms with things.

                      You sound like such a loving husband. Take care of yourself too.

                      Love Debbie x

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                        #12
                        Hi David, a warm welcome to you and Valerie and I’m very sorry that you are here. Voice banking is an important early job once you both feel up to it and I had great support from my speech and language therapist. She explained that I would need to record my voice via a website called Acapela and she arranged MNDA funding for me to buy the incredibly expensive Predictable app for my iPad and iPhone. In short, Predictable can use a banked voice from a number of sources; Acapela is one of the options. It’s all a bit over complicated really, but my SALT made it very straightforward, and for that I’m very grateful. There other posts on the subject and I write a piece about voice banking on my blog. Don’t hesitate to ask questions here, many of us have lived through this and you are not alone. Best wishes.
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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