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Thread: What Now?

  1. #21
    Forum Member Broostine93's Avatar
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    Will do, Terry Thank you

    Ellie- May I ask what you use to communicate?
    "This, too, shall pass"

  2. #22
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Broostine;

    The device I was thinking of is not quite as simple as I thought. It's a Multi-Memo recording device (DH341) from the RNIB. Here's a link:- https://shop.rnib.org.uk/accessible-...l#product-tabs

    You can record 60 messages but not easy to access them.
    Hi Broostine and Terry,

    Ive watched a video clip of the voice recorder (on the Talking Products website) and I think you are right Terry (about the messages not being easy to access) because you have to keep pushing a button to skip messages so that you can get to the one you want.

    Also, if there are as many as 60 messages on there, it might be very difficult to remember what order the messages are in?.

    http://https://www.talkingproducts.com/multi-memo.html

    Hopefully, Broostine, your Gran is getting on OK with the communication boards and her SLT might have an example of something a bit more high-tech for her to try out as well.

    Love
    Kayleigh x

  3. #23
    Forum Member Ellie's Avatar
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    I'm high-tech and use a DIY eye gaze system on my PC. I know this isn't your Gran's cup of tea though...

    I typed out instructions for my carers on everything from how to brush my teeth to where to place my coffee cup (yes, it has to be in a certain place for me to lean over and sip from it, as I can't move it )

    When I go for respite, I bring in my instruction pages and stick them on the walls at relevant points. Because I cannot speak, carers/nurses need only refer to the bullet points for when I don't have my PC, for example, in the bathroom showering, drying & dressing me or at night getting me comfy in bed.

    I also have some printed phrases that I know are relevant to me and and alphabet sheet, but if I didn't have my PC for any reason, even these are too limiting or, too time consuming for multiple sentences if using an alphabet sheet. That's where the communication boards come in handy, and I'm referring to the multi-symbol ones which, with practice, allow for word flow and sentence formation - it does depend on how your Gran wants to run the show, as you well know....

    I know you previously said your Gran's carers in the nursing home refuse to read how she should be cared for, which annoys and upsets me, so I couldn't imagine how it makes you both feel.

    Big hug to you - you're an inspiration to us all.

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

  4. #24
    Forum Member Ellie's Avatar
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    PS. I didn't realise that green thing was so small. And is it mainly for children and/or those who can't spell?

    I think it'd be hard for anyone with failing dexterity to hold, not to mention, as Kayleigh said, having to scroll through multiple phrases before landing on the right one. I think I'd (metaphorically) fling it across the room with frustration

    If your Gran has the dexterity, I do think a Lightwriter is best and hopefully her SLT will provide one.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #25
    Forum Member Kayleigh's Avatar
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    Hi again Chrissie,

    I know your Gran is reluctant to use anything too high-tech but just thought I'd let you know about the 'Let Me Talk' app because it is quite easy to use and it is free to download. It is fairly basic and it includes screens that are similar to communication boards.

    As the app is free, it might be worth seeing if your Gran is prepared to give it a try (if she hasn't done so already).

    Let Me Talk website:-

    http://https://www.letmetalk.info

    Let Me Talk facebook page:-

    http://https://m.facebook.com/LetMeTalkApp/

    Love
    Kayleigh

    P.S The Lightwriter option looks good too.
    Last edited by Kayleigh; 1st November 2019 at 15:05.

  6. #26
    Forum Member Broostine93's Avatar
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    Wow- thanks so much guys I really appreciate the effort you're going to to help with this issue! (though, in fairness, Gran is still currently half-talking, half-writing stuff down, so it's more of a pre-worry of mine. As we all know, the next 'dip' (as I like to call them) could come at any time and at any speed so I do like being prepared, rather than scramble around for a solution after the problem has occurred)

    Ellie- completely understand what you mean regarding where you need to have your cup placed. It seems like such a trivial thing until you actually NEED to have something placed in an exact position- I think a lot of people really don't consider it to be an important thing (and, I suppose, why should they think about it when they've never had to before?) As much as it irks me, I understand why the carers don't think it's all that important. However, if we take last night as an example- I had to spend 20 minutes AFTER the carers had toileted and changed Gran into her nighty getting her comfortable.
    The pillows have to be exact, she has to be at an exact point on the bed itself (which means I am dangerously pulling the sheet beneath her to lift her further up the bed or further to the left/right- big hernia worry!). Then we get to the feet (oh, the feet!) The drop foot and the twisting of one of the legs means getting those into a perfect position is exhausting- we're talking literal millimeters to get them into the right position!

    Kayleigh- I tried an app like that with her a few weeks back. She seemed disinterested, but not totally opposed. I think it's physically holding the tablet that will be a problem here- the table she has is already filled with everything else she needs to be able to reach during the day. She has a wall to her left, along with her handbag and dressing gown.Anything she puts to her right will fall to the floor. If I could find a way of getting a mounted somewhere in a decent position, I'd absolutely do it (if only to give her the opportunity to have a 'play' with the app during the day)

    (Sorry I always seem to go off on a tangent whenever the care staff are mentioned- they drive me up the wall with their incompetence!)
    "This, too, shall pass"

  7. #27
    Forum Member Ellie's Avatar
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    Yep!! I'm Goldilocks - has to be just right

    Those few millimeters can make all the difference, be it pressurea areas on heels or being able to reach a straw. We're not just being Divas
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #28
    Forum Member Gillette's Avatar
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    Hi Broostine

    I canít add anything to what others have said in answer to your question, I just wanted to say that I agree wholeheartedly with what Ellie said about you being an inspiration. Your Gran is so lucky to have you.

    Wishing you and your Gran all the best.
    Dina

    Trying to keep positive, but not always managing.

  9. #29
    Forum Member Terry's Avatar
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    Hi Broostine;

    You can get different stands or adjustable tables to hold tablets etc.

    Also a lightwriter is considerably more than a tablet computer.

    Love Terry

  10. #30
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Broostine;

    You can get different stands or adjustable tables to hold tablets etc.

    Also a lightwriter is considerably more than a tablet computer.

    Love Terry
    I understand that the MNDA have a Lightwriter loaning service (as mentioned by Rachel in her post earlier in this thread).

    The MNDA might also be able to provide a grant for other communication aids (if the aids can't be provided by local services).

    Chrissie might already know about the MNDA's 'Communication Aids Service' but, if not (and just in case anyone else reading this post would like to find out about it), I have provided a link to the relevant webpage, below:-
    http://https://www.mndassociation.org/support-and-information/our-services/communication-aids-service/

    Love
    Kayleigh
    Last edited by Kayleigh; 2nd November 2019 at 17:59.

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