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Thread: Hello to everybody

  1. #21
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    Lynne, I used ModelTalker, I didn't have to download anything, just set up an account and record it online. There is now a charge of $100 for those registering after July 2016, it was free when I started my recording. It took me many months but that was partly because my voice was (and still is) unaffected by the illness so I just took my time. My wife tells me that it really does sound like me, so I think it's well worth it. Not much fun doing the recordings though. 1600 sentences have to be recorded and some of them you have to keep repeating until the recording is good enough. Have fun .

  2. #22
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    Andy:
    Like you I used Modeltalker the moment I was diagnosed. I recorded it and stored it. That is 4 years ago. I now want to experiment with it and use it in select settings.

    What equipment do you use?
    I have not downloaded it onto any app.

    Please advise.

    Charles

  3. #23
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    Hi Charles
    I haven't downloaded my voice from ModelTalker yet. What I have done though is type in a few trial sentences within the MT online software to see what it sounds like. When you hear your own voice it often seems nothing like you would expect which is why I asked my wife for her opinion and she said it sounded just like me.

    There is an app for the iPad called Predicable which is the one mentioned in the voice banking guide written by Lee Milward ( Onein400.files.wordpress.com). This is the one I will buy as and when I need it.

    Andy

  4. #24
    Forum Member Barry52's Avatar
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    Andy and Charles,

    Please don’t pay for the app as under statute, the NHS is obliged to provide communication equipment and this includes a communication device and app. You need to involve your SLT to get the ball rolling. They gave me an iPad and predictable however you can’t use their equipment for social media and other apps so I persuaded them to load the predictable app onto my own iPad.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  5. #25
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    Barry:
    Thanks. I am with you on this. problem I have is the SLT told me they will fund it but I am not ready for it. Meaning I can still talk intelligibly. However I want to get ahead of the curve and want to experiment with it in certain settings. So I am looking to funding myself so I can get ahead of the curve.

    Best

    Charles

  6. #26
    Hi Lynne
    Welcome to this fantastic community of very kind and knowledgeable people that is this forum. In the brief time I’ve been around I’ve found it immensely helpful.

    Apart from the obvious, a big problem with MND is its variability. Particularly if yours progresses slowly, you may find it helpful to keep track of your ALS functional rating score as an objective measure of your condition. Otherwise, we all tend to forget what things were like in the past.

    A handy form of the latest version (ALSFRS-R) can be found at:

    http://www.outcomes-umassmed.org/als/alsscale.aspx

    You mentioned voice banking and Riluzole. Model Talker is certainly the way to go, if you have good recording conditions.

    Trials have shown that Riluzole can have a small beneficial effect. It is widely tolerated, but your medics will probably want monthly then three-monthly blood tests to monitor liver function.

    Below is a re-post of something I found recently about past Riluzole trials:

    Just came across a rather lengthy paper that is a review of Riluzole trials up to 2011.

    The link is: http://onlinelibrary.wiley.com/doi/1...01447.pub3/pdf

    The main conclusions are/were:
    A U T H O R S ’ C O N C L U S I O N S
    Implications for practice

    Riluzole 100mg daily probably prolongs median survival by two to
    three months in patients with probable and definite amyotrophic
    lateral sclerosis with symptoms less than five years, forced vital
    capacity greater than 60%and aged less than 75 years. More studies
    are needed, especially to determine whether patients treated earlier
    or older, more advanced patients with longstanding disease derive
    the same benefit. Benefits are not apparent to individual patients.
    The most frequent side effects are nausea and asthenia. Liver function
    becomes altered and requires monitoring.

    Implications for research

    Future trials should examine the effect on quality of life, functionality
    (ALSFRS-R), and in different subgroups (for example,
    more severely affected and older compared with mildly affected
    and younger patients). Data from all clinical trials should be made
    available to the scientific community. Genotyping in future trials
    might be useful to analyze the heterogeneity of responses to therapy.

    All the best for 2018.
    Doug

  7. #27
    Forum Member Barry52's Avatar
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    Quote Originally Posted by njm View Post
    Barry:
    Thanks. I am with you on this. problem I have is the SLT told me they will fund it but I am not ready for it. Meaning I can still talk intelligibly. However I want to get ahead of the curve and want to experiment with it in certain settings. So I am looking to funding myself so I can get ahead of the curve.

    Best

    Charles
    I don’t blame you for that Charles. We do our best to stay one step ahead of this disease and as ever the support services are 2 steps behind.

    Barry
    Life is a journey, not a destination.

  8. #28
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    Quote Originally Posted by Barry52 View Post
    Andy and Charles,

    Please don’t pay for the app as under statute, the NHS is obliged to provide communication equipment and this includes a communication device and app. You need to involve your SLT to get the ball rolling. They gave me an iPad and predictable however you can’t use their equipment for social media and other apps so I persuaded them to load the predictable app onto my own iPad.

    Best wishes,
    Barry
    Yes, thanks Barry, I've been told I should get some funding as and when required, but as Charles has said it's best to get things in place before they are needed.

    Best wishes Andy

  9. #29
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    Barry:
    The way I cope is to try control what I can.
    I have an IPad.
    How do I purchase the Predictable app?
    Where do I get it and what does it cost?

    Best

    Charles

  10. #30
    Forum Member Terry's Avatar
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    Hi Charles;

    https://www.therapy-box.co.uk/predictable and around 200.

    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 keeps 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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