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    • #16359
      Debra Kaufman
      Participant

      I see that there has been a bit of discussion on the site about whether or not to voice bank. Anyone here care to share their decision-making process and/or experiences?

    • #16363
      Dagmar Munn
      Keymaster

      Debra, I have experienced ALS speech issues: almost losing my voice, being given a slate to write on, checked out on Tobi and told to live with it. Never the less, I researched and found that are ways to “keep on talking.”

      I remember when voice banking first came to be, about 7-8 years ago. The big marketing/promo was that it was a way to “keep” your voice. Which is a slight misnomer… yes, you can save your voice as a recording… but you don’t get it back into your throat (what every pALS wishes)… it comes out of a machine/AI… and only after you’ve first typed the word.

      I am pretty opinionated about the worthless-ness of voice banking. Sorry. It’s promoted as something wonderful to do… but if you want to remember what you sound like, move like, look like – – why not take a video?

      Rather than spend hours recording one word at a time… better to spend that time learning to breathe correctly, change your pronunciation of challenging words and use your vocal cords differently.

      I’ve written quite a bit about ALS voice issues here are a few:

      To Bank or Not to Bank, I’m Voicing My Opinion

      Use These Innovative Strategies to Keep on Talking

      Talking Myself into a New Habit

    • #16377
      Jonathan L Maddock
      Participant

      I spent some time recording phrases listed in a three ring binder that Childrens Hospital in Boston gave me. BTW, I’m 65…. MGH gave me a referral there and CH of B set me up with a recording device and an account for uploading.

      So over the course of five Saturday mornings I recorded over 3100 phrases, exclamations, questions, etc. Even a clip of me playing trombone.

      I’ve uploaded about a third of that. The uploads take a long time.

      I haven’t tried, nor needed it yet. I hope not to, but who knows?

      Dagmar’s opinion is valid (when is it not?). So supposedly when my voice banking is married up to whatever current software is available, the synthetic voice will sound something like me. Some of the things I recorded might just get played back exactly as I said them, no need to synthesize what is already perfect, right?

      I’m not sure if I wasted time, or made a worthy investment. But it wasn’t that much time to do it, so I thought it was worth giving it a shot.

      Jon

    • #16383
      Lowell Stewart
      Participant

      I see from the discussion that the stage of speech impairment is critical to this decision. In August 2019 I was still able tor read phrases more or less naturally and I’m glad I did. it’s nice to have my own voice on my SGD. Although I’m still able to talk with varying degrees of intelligibility.

    • #16384
      Jonathan L Maddock
      Participant

      Lowell,

       

      Same for me. I really can get difficult to understand, and other times I’m spot-on. I just never sound like I used to.

    • #16386
      Fern Cohen
      Participant

      Why would you NOT??  I lost my voice quickly and found out about voice banking when it waa too late for me.  If I knew about voice banking when I still had a voice, I would have JUMPED at the chance.

    • #16388
      Dagmar Munn
      Keymaster

      To clarify my previous answer a bit more…

      It is perfectly fine for one to spend the time recording if you want to have “your voice” coming out of a particular device. But, in the early days of the voice banking concept, auto-generated voices were sub-par – – so being able to use an automated version of our own voice – – is appealing.

      Nowadays, we have many devices speaking with improved and pleasant “voices.” For example, our Alexa, cell phone, GPS system, tablets, even the self check-out register at Walmart, talk to us (and everyone else) so that the instance of hearing a device talk to us is well accepted. Back then, people would be surprised to hear a device talking – -much less one that we pALS were intentionally operating to speak for us. Now, other people aren’t surprised or put off.

      Personally, as I’ve shared earlier, I don’t need “my” voice to come out of a device. Any voice will do – – as long as the other person can hear it and we can “converse.”

      My red flag is when speech therapists don’t even offer their patient breathing/pronunciation/microphone options…and give the patient the mindset that there isn’t anything to do to keep their voice.

    • #16390
      Bob Ives
      Participant

      I voice banked using the Model Talker synthesizer program 4-5 years ago when my enunciation was better and my speech rate was more normal.  The financial cost was minimal (~$200), but the time to record the huge array of phrases was substantial.  Most pALS have the time, but need to reach back for the self-discipline!  I’ve tested the result and find it’s OK, but I haven’t had to use it yet.  I would recommend voice banking since it’s low cost and must be done well before it’s needed (in my case, years) … minimal investment with good upside potential.  It certainly isn’t a replacement for speech therapy or other pulmonary exercises, but appropriate to use with other remediations.

    • #16391
      Susiebow
      Participant

      I tend to agree with Dagmar on this issue.  When the time comes, any voice I can use to communicate with will be fine with me.  However, when first given the Tobii Dynavox two years ago, I did decide to “message bank”.  I recorded hundreds of short phrases that I could use when needed, especially when I could no longer type in my responses or questions.  Luckily, I’m still able to communicate well enough not to have to use the Tobii at all.  Time will tell whether my efforts pay off or were a waste of time.  One reason I chose not to voice bank was a hearing from a PAL at a support group meeting.  She shared that she had spent tons of time voice banking, but when the time came to use it, she was so disappointed in the “new voice” that she rarely used it.  Hearing that just validated my original decision not to voice bank.

    • #16417
      Cate
      Participant

      I use the same resources as Jonathan, above. I’m not so much interested in having my voice digitized as preserving phrases in my voice for the future–while I’m still here and when I’m gone. Yes, it’s true you can just record yourself, but the professional communication therapists I work with have lots of advice, suggestions, and tools for recording. Plus they offer services for making communication easier through all kinds of technology, which has helped me with my work. It doesn’t really take much time, and my friends and family are grateful that I will be able to communicate in my own voice (I’m talking about the recordings, not the synthesizer). I have recorded phrases, songs, and endearments to my family, and commands and endearments for my dog (animals tend not to respond to a synthesized voice). I’m still talking normally and I’m glad I decided to bank my voice now, before it goes or changes. My response is also, Why would you not take advantage of this opportunity? But, to each their own. We all are different and all have different needs and priorities. However, I’ll say that once your voice is gone, it’s gone. So if you think you’d like to bank your voice, don’t wait.

    • #16419
      Frankie a reex
      Participant
        How are you doing
    • #16424
      Isabelle
      Participant

      Hi all, I have a question : how to encourage your hubby to voice bank whithout hurting his feelings and destroying his spirits… how to encourage him to do it while he still talk and live as if nothing, hoping for a cure, hoping to get enrolled in a clinical trial, hanging to hopes and research while knowing too well how this disease steals functions one by one for having witnessed first hand his mom fight for the last 6 years ?  I am the one lifting his spirits up, looking for trials, making appointments, doing the research and attending webinars …. he does not feel able to do it without falling in the deep whole of sadness, regrets, and fear… so I do it for him… but what about voice banking ?

       

    • #16426
      Jonathan L Maddock
      Participant

      Isabelle,

       

      I’m sorry to hear that your husband is morose about the situation. He has every right to be, but the mindset is wrong. I think getting him to a therapist and discussing the situation with a professional would be the best way of getting him to turn back toward life and enjoy what he has.

      My doctors are regularly asking me if I’m doing OK and how is my attitude. I am so fortunate to have a faith and belief in a higher power. That gift has bouyed me.

       

      Jon

    • #16443
      Steve Gillan
      Participant

      It’s one of my big mistakes not having my wife do it back 8 months ago. I thought about it and thought about it but did not want to put that on her that she was not going to be able to speak.  I put an app in a phone now but she’s very reluctant to use it. I truly think if it was her voice in the app it would be a different story. My mistake trying to protect my wife. I would strongly recommend doing it.

    • #16444
      Steve Gillan
      Participant

      If I may add to my original comment in support of voice banking; As thing go down hill and speech becomes worst it’s the little things the family misses, the daily comments like “I love you”,  “how was your day”, phases that I know my wife wants to say to us but tries to struggle through.  Her laugh, her concerns and the way she says it.  I truly miss the sound of her beautiful voice, the sweet and tender comments and the feelings that came along with that.  I think if she had the ability to express that in her voice it would make her feel better.  I also think she would use the app more. Just my opinion.

    • #16445
      Isabelle
      Participant

      thank you Steve and Jonathan …I do appreciate your comments and responses and will do my best to make it happen … without widening the wound that is already so painful and carefully hidden behind distractions and daily activities …thank you !

       

    • #16579
      Cate
      Participant

      I was diagnosed early in 2019 and wish I had started voice banking immediately. Two years after symptoms, my voice already sounds different and it is a strain to get some words out. I do breathing exercises daily but yet my voice grows weaker. I have opted to start banking my voice with a new service called voice keeper ( https://thevoicekeeper.com ). I like it because it has both a webpage interface that I can use with my computer microphone as well as having an iPhone app where I can use the iPhone microphone. Free to record your voice. You just need to set up an account. To use your voice, they have several options… I will wait until I need to use my voice to purchase my voice recordings ($299) so that I buy the correct format for whatever speaking device platform I will eventually be using.

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