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Thread: Greetings All (New Boy on the Block)

  1. #1
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    Greetings All (New Boy on the Block)

    Only very recently diagnosed with MND. My wife and I are still coming to terms with the diagnosis, but I have been very impressed with the support of the MND Association. Received a vast amount of information from them yesterday and I am trying to read it all.
    We are trying to stay positive and upbeat. We have even had a couple of laughs about everything that is going on. Our family and friends have has been very supportive and we have received many offers of help - even in lockdown. In that, we are blessed
    I know that it is a journey, but I look froward to being in contact with you all over time.
    Regards and best wshes to you all, and remember STAY SAFE AND WELL.

  2. #2
    Welcome to the Forum David.

    Sorry you've had to join us, but you will find a huge amount of information, support and friendship here.

    Your positive attitude is one of the best therapies.

    Thinking of you both.

    Doug

  3. #3
    Forum Member Ellie's Avatar
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    Welcome to the Forum, David - sorry you've had to join us though.

    I'm a great supporter of laughter and a positive attitude, although nobody on this planet manages to do that 365 days a year (or 366 this year )

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
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    Hi David,

    Welcome and sorry about your diagnosis, I know where you are at the moment I was in the same place this time last year. Takes a bit of getting your head round but once you have its time to get on and enjoy life. I’ve always been known to say even before I new I’d have MND we're all going to die one day anyway, its just with MND we know it might be sooner than we thought. Having said that since I was diagnosed Jan last year and thought I would be the next one within family and friends to die, since then we’ve had 4 family and two friends die and only one of them was expected, they were all sympathetic and supportive to me when I was diagnosed. This is how I’ve got my head round it and now making the most of life I can. A lot more people now getting Covid19 and dying in days or weeks than people with MND.
    Sorry, my way of thinking might not be right but thats how I am dealing with it.

    Regards David R

  5. #5
    Forum Member Barry52's Avatar
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    Welcome David to this forum.

    You will find support and advice from many of our members. Your positive attitude will help you deal with the challenges ahead.

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

  6. #6
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    Hello David and welcome to our friendly forum.

    I am very sorry for your diagnosis.. It took me a while to come to terms with mine and it must make it especially difficult for you during this lockdown. The forum is a good place for friendship and advice on practical and emotional issues.

    You seem to have a really positive approach and it's great you have lots of support from family and friends.
    Take care,
    Love Debbie

  7. #7
    Forum Member Lynne K's Avatar
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    Hi David B, welcome to our forums. I too am sorry about your diagnosis. It’s smashing that you’ve had offers of support during lock down and beyond. It does shake us to our core when we hear those three letters MND. But we all tend to come to term with it. It sounds like you did this quickly.

    I hope that you’ve heard from your local support team (OT, Physio. Speech Therapist and sometimes a Diet Counsellor). Most of us bank our voices too. Advice about that can be found in previous messages. You could put ‘voice banking’ in the search box. The earlier the better to get this started. Soon I’ll be using my banked voice in Predictable on my iPad.

    Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #8
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    Hi Lynne, Re your comments about voice banking and predictable, I agree, do it as soon as possible, I did mine asap but unfortunately it was already a bit late for me and although it sounds like my voice its not clear enough, so now is the time David B if you have any signs or predicted speech lose.
    I now also will have to use an app to speak as my voice is now unintelligible, but I just wanted to ask you Lyn how you get on with Predictable, I find it quite frustrating that when you want to type something and perhaps make a mistake you can’t go back and edit it at all, not even put a coma in to break the speach up a bit. Predictable have told me they’re working on it and let me try a new trial version which still has a long way to go. I just wondered how much you’ve tried it and what you think of it? I have now downloaded Proloque2Go app which is much better to use but unfortunately you can’t use “model talker” voices on it, However I really like the voice “Graham” (same voice the Lost Voice Guy used on Britain’s Got Talent) and am going to try that I think.

    If anyone else uses the speech apps I’d appreciate advice, perhaps I’m expecting to be able to say too much like I used to! perhaps I should just except prerecorded phrases?

    Regards
    David R

  9. #9
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    Hello David and welcome. I lost my speech before voice banking was available and used a wonderful cheap app called Speak It. Unfortunately it’s not now available and I’ve tried using Predictable but, like you and others, find it really frustrating. I’m now using Speak which is free. It isn’t perfect but it does the job!

  10. #10
    Forum Member Lynne K's Avatar
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    Hi David R, I have only had a few short tries with Predictable. The last time was several weeks ago. I remember some frustration not being able to correct individual letters, having to delete from the end back to where you want to alter. I have changed to an iPhone recently and that’s frustrating enough about how to correct errors. I’m quite concerned now about predictable. I’ll have to have another try soon because I’ll need it soon. I really want my own voice so will stick with Predictable until such time that I’m too frustrated with it.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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