[00:00:00] Paul: Imagine waking up in the morning. And so coming around, you try to move the arms and legs, but they done choice spot. It’s like being wrapped tightly in clean film from head to toe. You try to call for help, but you all voice box is with you are helpless. Welcome into an enemy. I’m Julie. And this is my husband.
[00:00:27] Paul is 59 and was diagnosed with motor neurone disease in May, 2017 with bulbar onset. So the first thing that we noticed was his voice started going. He is such a larger than life personality, losing his voice was probably the most horrible thing that could have happened finding this machine and being able to use this machine to be able to communicate.
[00:00:52] Paul: It’s opened up a brand new world for me and me[00:01:00]
[00:01:02] but I can also keep touch with the outside world, the only minor frustration so that no matter how quick can you go to your wise marginally behind that, but on the whole, it is a good. All our friends who come around, sit and chat with them for hours and he can actually join in conversations. He hasn’t lost his sense of humor.
[00:01:23] Julie: It has been a complete life-changer for us. You’re kind of thrown into this whole rollercoaster of emotions and things that need doing, and you start looking years ahead about what might change. One of the biggest supports we’ve had, that’s been amazing is the NHS. We’ve had wheelchairs when we need them with.
[00:01:44] Shower stools, anything we might need to make our life easier so that we can carry on. But again, the most important thing for us has been the eye-gaze technology, having the ability to communicate, which without less, to be honest, like would be very difficult. That’s the best thing we [00:02:00] did was to voice bank cause spent weeks banking his voice, which was very easy.
[00:02:07] It was just a bit time-consuming and amazing product or model tool is probably 90% of his voice, but he’d already got a little bit of slurring. Um, so some of the words don’t come out quite as clear as they would have done when he spoke previously.
[00:02:29] Julie: He does have a very south London accent. So that is what comes across the phrases. And the time it takes to record those phrases probably took three or four, two or three hour sessions each. And we split it into little bits because, um, it’s very tiring, especially with the diagnosis of bulbar where obviously your voice gets tired.
[00:02:51] The cords get tired very quickly. So it’s worth doing it quickly, but do a little bit each day so that your voice isn’t tired when you were recording. Um, so the [00:03:00] key was I think, to do it first thing in the morning when he was at his best, we emailed friends and family asking them for any particular phrases that they associate with Paul, anything that they’d like him to still to be able to say we got an awful lot of very funny things back.
[00:03:16] And of course came what were some things that they really still wanted to hear? Dad’s saying to them, he recorded those as specific phrases because you can put customizable phrases in as well that come out with your complete intonation rather than. Intonation that comes up from the eye-gaze technology.
[00:03:30] It’s worked really well, and he still gets a laugh out of people on a regular basis with it while he could still use his hands. We had an iPad with predictable on it. The iPad worked really, really well and the eye gates took over and it just always seemed to happen very seamlessly with.
[00:03:53] Paul: I guys who allows me to communicate not only one sound needs once also, it gives me self respect by allowing [00:04:00] me to say is simply my window to the outside world. This machine has become my best friend and I can then Bryce what’s happening. So am I.
[00:04:16] Julie: If you’re out with a group of people, then Paul’s conversation can get a little bit lost. Cause he could regularly be a sentence or two behind or a conversation behind occasionally. So we do try and keep our social group smaller. You don’t realize when you’re communicating with someone, how many times you ask multiple questions?
[00:04:35] He gets so frustrated with me. If I say, are you okay? Or are you too warm? How does he know? So if he’s trying to do a quick one answer, um, he’ll come back with yes, no, or no, yes or yes, yes, no. Yes. And then I forget the order of asked the questions in. So you learn a new way of communicating by trying to just ask very succinct, quick questions.[00:05:00]
[00:05:01] Paul: On the balance of the technology works 85% of the time that cares to keep going. There are occasions where it doesn’t work. So you do have to revert to manual systems, for example, laying in bed, certainly in the bathroom, you can’t use it because of. I can’t get wet. It would damage it. And the other thing that we found is you can’t use it amazingly on the deck of a boat in the middle of the sea, in the sunshine, because the glare, et cetera, just doesn’t play very well with the screen.
[00:05:32] Julie: There are manual options. You can have a sheet for feelings where you stay with me. I love you. I’m not sure I’m angry. I’m okay. I’m frustrated, et cetera. Or there’s one about the room, you know, can you put TV on the light off door open, um, about being in the position that you’re in. This is one that we do use.
[00:05:51] Um, so I want to sit in my wheelchair and I go back to bed. Can you tilt the chair forward? My slide mat on my chair. [00:06:00] We’re just putting another list together at the moment of all the words that we now really think we need on a regular basis, that would be very useful to have. And then all of this can be put together into a flip chart, which you can then carry around with you.
[00:06:13] So you can put all the words together like this, and then you can have a page for females and wasn’t a page for movement, a page for rings, et cetera.
[00:06:24] And the other one that we use is the alphabet chart. I’ve seen people using this and they are incredible how fast they use it. We know it’s going to be very useful and we do know that we need to probably practice it a little bit. And the kids have all been playing with it. They find it hysterical, spelling out rude words to each other.
[00:06:41] The key thing with, um, what we’re trying to do is that Paul doesn’t lose his personality. He’s always been one of the funniest. Always being one quick with all the comments coming up with something funny at the end of every conversation, if somebody mentions a word, he’s got a funny joke or a story to tell about it, and this [00:07:00] technology has allowed him to still be in the room.