Difficulty in speaking clearly was an early symptom that some people experienced (see 'First symptoms'). Sometimes others assumed they were drunk because their speech sounded slurred. Other people we talked to developed speech difficulties later on. Not everyone with MND will develop speech problems - the MND Association provides information about symptoms and types of MND.
The loss of speech could be frightening and hard to adjust to. This was both in practical terms, for example not being able to make people understand what you wanted (especially during hospital stays), and in emotional terms, for example losing the ability to express your personality, make jokes and take part in normal conversation. Being good with words and speaking had been an important part of many people's identity, either at work or in their social life.
It's frustrating trying to make yourself understood when you have speech problems. She went to an...
It's frustrating trying to make yourself understood when you have speech problems. She went to an...
Age at interview: 72
Sex: Female
Age at diagnosis: 72
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We were talking about how you feel about how people react to your speech. Perhaps you could say a little bit about that.
Well, I find that very difficult. Some people are good at listening and always have been. Others are shy and run away. Some just don't hear and think you're mad [laughs]. It's not comfy. I don't find I like asking for things. I just like to go and pick up and pay in shops. And for instance I think there's somebody new over the road, but I can't knock on the door and say anything because it just sounds, oh, she may not even understand what I say.
Do you ever say to people before you start talking to them just, you know, 'I've, I've got MND and that's why I'm a bit slower'?
Well, sometimes I say, 'I've got a voice and speech problem.' It depends on what one's got to negotiate, if you're pinned down. I find the phone bad this way. I do say, if I've got to debate something I tell them. And I also say, 'I'm not dementing. I am slow.' That is all right unless you're phoning something and it goes to India, and you can't understand them and they can't understand you.
Call centres?
Yes, call centres are hard. But it's not just there. I mean north of, north of England, they have difficulty. And again I tend not to put a good argument out. I limit what I say, and that I find very frustrating. Or, you know, you can't just neatly spell things out. You have to reduce it all, and it's like trying to make a nursery rhyme of what you say. Hopeless sometimes.
And the, the concentration and tiredness issue you were talking about.
That's huge. On those I tend to avoid ringing people in the evening. If it's a friend I'd ring in the morning because I'm less tired and my voice is stronger. But, you know, that, as you say, concentration is a big issue. And I still go to courses to try and hold it. And that's not easy either. I had to explain to a tutor, 'I can't discuss with you or with the class.' I have difficulty writing notes. And I really want the notes, so I must find one of those little recording devices, I think. One of them was very nice about it and he said, 'Oh, fine. Don't worry about it.' I was bursting with an issue on one of my courses, so I did bag the tutor afterwards amid everybody else ganging up wanting to. But that's not easy and it, you've passed the, you've passed the significant moment. So that's frustrating too. Because sometimes you feel you have a contribution, and you would like them to respond and enlarge, but you can't do that. So there are limitations to courses that are related to artic. And voice.
Her father was frightened and frustrated that he couldn't communicate. He could not use a...
Her father was frightened and frustrated that he couldn't communicate. He could not use a...
Age at interview: 49
Sex: Female
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So he'd spent five weeks in a stroke unit and then he was moved to the neurology unit'. When my father went into that unit he had no movement left in his arms or legs or body. He was there for probably two months and in that time he lost the ability to swallow and talk completely. I saw a lot of things in that unit that were very shocking but changed the way I thought about the way that we treat people who are completely paralysed. And about the needs of people to communicate and - particularly as I was spending every day with my father - how just because you can't talk any more you still want to tell jokes, you still want to talk, you still want to say things. And the onus is on the person sitting with the person who can't talk to enable them to do that. And that requires a lot of energy on the part of the other person. For some of the patients who, who could perhaps only move an eye ball they required someone to come and go through a spelling board with them to be able to spell out a sentence like you know 'I've got a headache,' and I'll leave it up to you to whether you think staff have enough time to go in and do that.
We really managed up until about two weeks before he died being able to work out what it was he was saying. But he wasn't going to go down the route of one blink for 'yes' and two for 'no'. That was his block, if you like, because we had reached that stage where we were going to have to ask twenty questions and get him to say 'yes' or 'no' to them to find out if he wanted a drink of water, for instance, or fluid or painkillers or whatever. And he found that so awful and frightening.
I think you really have to look upon people who can't move or communicate, you must assume that they are aware, even if they don't appear to be. You must assume that they can feel, even if you think they can't'.I know there are a lot of difficulties caring for a person like that, but one of the most important things for that person is to be able to talk, however they do it. And if they need someone else to allow them to talk, then I think perhaps they need the opportunity to do that more often than they are getting. Otherwise whole days will go by when the only conversation has been 'Do you want a drink?' I mean, they may as well be in solitary confinement.
Other motor neurone disease sufferers that I've seen have had a sort of keyboard that they can type out relatively quickly, even at the speed almost of talking, their particular responses. But of course he couldn't move his hands, his paralysis had spread from his extremities, if you like, inwards very quickly, so his arms were completely useless, there was no chance that he could have typed out. And of course Stephen Hawking, I believe he does it with his forehead, doesn't he? But that is quite a complicated machine and I don't know that my father would have learnt to use that particularly quickly. I think it was the single most painful thing for him not being able to communicate, because he was witty and I think that was the cruellest thing to take away.
It's very easy - and I'm as guilty as the next person for thinking it - but when people don't sound right when they're talking or they can't talk any more to imagine that they are stupid. Just because somebody doesn't look or sound the way you think people should look or sound doesn't mean that they are not the same person inside, and they're certainly not stupid.
He likes to be out in his car because he doesn't have to speak. It's the one place where he feels...
He likes to be out in his car because he doesn't have to speak. It's the one place where he feels...
Age at interview: 60
Sex: Male
Age at diagnosis: 57
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Has it affected your driving at all, the right hand?
No. Obviously it is a DVLA [Driver and Vehicle Licensing Agency]-notifiable disease, so the DVLA are aware of my condition, and obviously it affects my licence, but no restrictions as yet on my licence, and I get the road fund tax paid for me.
And do you have to go for tests, re-tests with the DVLA?
Not as yet, no, no. I think it's a situation between me, my GP and consultant. Obviously if they see a deterioration, then who knows? But as yet, I'm fine. Driving is one of my - I wouldn't say hobbies - but I like vehicles. And I feel totally normal behind the wheel. I don't have to speak, and it's the one situation where - certainly at the moment - I totally feel normal.
Advances in technology have given people many opportunities to communicate in different ways, including texting, email, internet forums and voice software. These did not suit everyone - people with hand and arm weakness sometimes found it difficult to use a mouse or keyboard, for example, although computer adaptations are available to help people with limited hand use. Those who were not used to typing could find it too slow to use a computer. Some preferred to use handwriting, and some used letter frames, picture charts or sign language. In many cases, people used a combination of strategies. One person also used a battery-powered voice amplifier.
Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard...
Writing and typing were not easy for Teresa. Her husband adapted her Lightwriter so the keyboard...
Age at interview: 59
Sex: Male
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She was a verbal communicator. MND therefore for Teresa was a particular cruel disease. We looked for, as, as her speech faded we obviously looked for other methods to assist her. We wrote words on pieces of paper. We had a magnetic board and all sorts of things so she could make words. We made lists of words that she could point to. It was not easy for her.
Education 50 years ago in Ireland was not what it is today. Ireland today enjoys one of the highest educational standards in the world. It didn't 50 years ago. Teresa came from a large family and the emphasis was - because schoolbooks had to be paid for - was concentrated on the lads in the family. And Teresa herself as a girl would rather be in the fields with her daddy than sitting in a boring schoolroom learning all about dead people. That's the sort of person she was. So she may not have had a benefit of good education but she was very bright, very capable. But communication in writing wasn't. She was a verbal communicator, that was her way. I had tried to help her develop keyboard skills. I'd even tried to use voice recognition programmes. And the English voice recognition programmes seemed to struggle with a very heavy Irish accent. We worked on that for some months but at that time it didn't really seem worthy of the effort. And of course when MND presented itself and her speech began to fail that was no longer an option.
We were provided by MNDA a device called a light writer manufactured by Toby Churchill, a pretty good machine. Teresa didn't have keyboard skills so the speech therapist and I set about taking the machine apart and changing the keyboard over and put it in alphabetical order. A simple thing, but it made a big difference, because a QWERTY keyboard means nothing to anybody that hasn't got keyboard skills.
We also found that with that machine you could actually pre-programme in frequently required phrases and words which Teresa used quite extensively. I had a piece of paper with various sentences written on with the number against it. When she pressed that key the machine would display the message and speak the message that she wanted. And we carried that machine with us everywhere we went.
She never felt comfortable enough or confident enough to use it perhaps in a local supermarket. And until very, very late on, up 'til Christmas she was going to supermarkets. She wanted to be out and doing things as much as she was able. By that stage she was having difficulty walking as well but by hanging on and our private little sign language she was able to let me know what she wanted and 'Buy some of this' or 'No, we don't want that'. And 'Hello' to this person and so on and so forth.
He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up...
He has a Lightwriter but prefers white boards. He uses texting and the internet. His sons ring up...
Age at interview: 54
Sex: Male
Age at diagnosis: 52
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Yeah. Communication aids. Mike's just written there that he likes the whiteboards, which is these things here, and you can't get these in the UK, these whiteboards. Just show, show Louise [researcher] your whiteboard.
Ok, so a particular - actually if you could move it into the camera and hold it - yeah, like that.
[Mike shows whiteboard]
Is that OK?
Great, yeah.
With the dry marker pens, so that you can actually just write down what he wants to write down and then rub it off. And you can't get them in the UK. But I have actually given the information to the Scottish MND Association. They're going to try and get somebody in the, in the States to, to get a contact to get them for people over here.
So it's the size, it's nice and...
Well, he has a one that's about that big as well [indicates hand-sized]. So that if he goes to the bank it's there in his hand. So it's more discreet than something like that. That's more of a conversation, conversation board. But we have actually given some to people, because our friend in the, in the States, when I - he sent some over initially and they do wear out eventually, you know, and that. And I emailed him and said, 'Can you get me a contact for, for these boards?' And I think within a few days a delivery person came. And he'd actually bought the shop out [laughs]. And this big box came with all these whiteboards. So we've given some, some out to people, you know, where we've known that - like the guy in [town] we gave some to him, didn't we? We've also given some to people like who've had cancer, throat cancer, who've lost the, the ability to speak as well. So when, whenever [name], Mike's speech therapist has been, if she's told us of anybody we've just given her them, you know, and she's taken them out. But the Scottish MND Association are trying to get them now. So he prefers that. But he finds that's the easiest way to communicate. When we're driving, though, obviously if he writes on his board and I'm driving, I can't read what he's, what he's written. So we're, I'm trying to get him into the way of using the Lightwriter, because, you know, he can, he can play that to me while I'm driving. And so we're trying to manage that at the moment, aren't we? I would say that 99 per cent of the time he uses his whiteboard at the moment, than the Lightwriter.
How long have you had the Lightwriter? Is that fairly recent then?
No, right, right from the very beginning [laughs]. Yeah, the minute that [name], the minute his speech therapist came in she, we talked about how, communication. At that time he was still speaking, you see. [Mike writing on whiteboard] And she sort of said, 'Well, it's better to get these things in place beforehand, so that you've got them.' Because there's not infinite resources, you know.
What, what? Sorry. You want to'
You use it, you use your Lightwriter.
Yeah. I was going to say what stops you using it more often? Is it because you have to get it switched on and it takes for ever to get it going, or?
I think it's because it's slower really. [Mike writing on whiteboard]. You know, you, this is more interactive. You know, if I, people who come to see us now, if they see Mike writing they'll hold the conversation for him, or they won't change the subject. We've, that's been a lot of effort, to get people to do that. But we've talked to people and said, you know, 'If you see him writing, try and stop.” Or, you know, and, and I’ll say to Mike, “Say that in a minute.” And I’ll make sure that the conver-, he brings that into a conversation. So it’s more interactive, I think, than the Lightwriter. [pause] And the size of these things as well, they’re easier to take, take into a, into a place where you’re having a conversation. So that’s the...
Yes, yes, yes, I can see. I mean, the, the, having something that’s sort of computerised kind of distances you a little bit from the conversation.
It’s invaluable in the car though, because for obvious reasons, you know. I mean the, I can’t read what he’s writing, so we, it’s handy for, for that sort of thing.
Yeah, so you can actually continue to have a conversation when you’re driving. Yeah, yeah, OK. [Both nod]. Have you had any other communication aids or is that pretty much it, the whiteboard and the Lightwriter?
Texting, don’t you? We’ve, with all our friends and family, as, as things have changed we’ve tried to adapt and get people to adapt with us as well, you know. [Mike writing on whiteboard]. So not - obviously Mike now can’t, doesn’t answer the telephone at all, unless he, the only time he answers the telephone if he knows it’s his sons or maybe my sister or whatever, sisters. Because if he sees, if he knows, sees the number, you know, what I’ve said to people is, “Don’t ask him questions. Just tell him what you’ve been doing.” So if his two boys ring up, or my son rings up, they’ll speak to him – in a minute, love - they’ll speak to him and say, “Dad, I’ve been doing x, y, z.” They don’t ask him questions. So they talk to him and tell him what they’ve been doing, and then they come on to me and I tell them, you know, what’s, what’s been happening. So we’ve, I think as I said to you on the phone we’ve become quite a double act, really [laughs]. So people text him as well. Which, he’s still able to use his hands. But that’s a bit fiddly, the texting, you know, with people. But we’ve set him up on Messenger on the computer, so he can have live talk with people. So a lot of our friends have now gone on to Messenger, so that they can have conversations with him on the, on the computer. So he’s, he does that. So, very keen to make sure that, in terms of the social interaction, it’s sustained. Because Mike’s - both of us, but Mike in particular - has always been very very sociable and, and, you know, and enjoyed that side of things. And we believe it’s important for that to be sustained. An example I’ll give you, Mike doesn’t eat or drink at all now, but we still have dinner parties. [Mike writing on whiteboard]. And that might sound a bit cruel, but it isn’t, you know. It, it’s harder for the people that come to eat, because they feel guilty about eating. But it’s just as important that Mike has the social activity going around it. Yeah, I’ll mention about that. So it’s important for that. So we do try to do that. And of course we always try to have it here, because he can wander in and out, like you’ve seen him do today, Louise. He can wander in and out and come and join us and join the conversations. So it works out quite well in that way. And he’s just written that when, at the roadshow [Fire Brigade Road Safety roadshow] last week, every, the whole team that run the roadshow, when they’d finished the three days that they do, they all go out and have this celebratory drink in, in the pub, you know, and that, and go potty really, you know.
Di used a letter-frame and signals such as teeth-clicks to communicate. She had been a lecturer...
Di used a letter-frame and signals such as teeth-clicks to communicate. She had been a lecturer...
Age at interview: 55
Sex: Male
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As her voice got weaker and it became more and more difficult for her to speak until eventually she couldn't really speak at all, and just make little tricks and things. We developed a code where she could say yes and no and a few simple things just by clicking her teeth but she couldn't speak. So we communicated through a letter frame and that's what it looks like. It's just a series of letters around a piece of cardboard that's all it is, groups of letters at different points around the around the perimeter and then some coloured flashes here, yellow, black, green and so on. So to indicate to spell out a word Di would' say she wanted a letter A, she would look up here first of all to the letter A and because the A is black you know within that group of letters. She would then look down to the black flash. So two eye movements could uniquely identify a, a letter and she would the spell out what she needed or whatever she wanted to communicate. It was a long and laborious business but we actually got very good at it after awhile. And and we actually found that when we were out we could actually communicate with our friends because we knew where the letters were and she could actually to some extent, communicate just with her eye movements.
And the loss of her speech was a great, was perhaps one of the greatest loses to her because she was a communicator. She was a lecturer. She communication was her, you know, her big thing. It was really important to her. So when she got to the stage where she couldn't speak at all and communication' her eye movements although she could still make them and most of the time she was lying down and it was actually very difficult to interpret them even with the use of the frame.
He gave the speech at his daughter's wedding using a laptop computer and a projector. [Ken is...
He gave the speech at his daughter's wedding using a laptop computer and a projector. [Ken is...
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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So we had the wedding, which was very nice, wasn't it? It all went to plan. And of course Ken obviously couldn't do a speech. I would like to have said I'd got up and done the speech, but I knew no way I could do it. The next choice was our son obviously, but he didn't feel he could do it either. Then our daughter came up with a brainwave of putting it on the computer. So Ken typed up his speech on the computer. We got old photographs, put some music to it, and we had a screen up in the marquee where the reception was, a big screen, and it came up like a slide show, you know. We made it jokey, didn't we, because we didn't want it to be sort of sad. So Ken started off with something like, 'I'd like to say a few words, but I can't', which some people took as funny and some people took as sad. But I think we put 'Ha ha' after it or something, didn't we? Our daughter's got a friend that plays the piano without music, he's brilliant. And years ago on the television was a programme called 'Singing Detective', which Ken loved, and there was like a lot of music in it. And we picked out a song out of this drama, a very old song, and he played that in the background. And it just seemed to fit somehow, didn't it? Rather than it being dead quiet, he just tinkled away on his electric organ in the background. And there wasn't a dry eye in the house, was there? Everybody was crying, but it really worked well, didn't it? It was brilliant. So anybody that's got a wedding and can't do a speech, I'd recommend it. And of course we've got it to keep, you know.
She felt most communication aids were not suitable for her elderly mother. The speech therapist...
She felt most communication aids were not suitable for her elderly mother. The speech therapist...
Age at interview: 40
Sex: Female
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I think that there's a real lack of understanding or joined up thinking in what somebody needs in terms of communication. Some of these systems are really quite difficult to grasp. They work on a kind of a menu based logic, which if you've used computers and you're well versed in how a computer system files its information and operates, then you could probably pick it up really quite quickly. For a woman of 73 to pick that up, who thinks about language, and thinks about it in a very different way, it's never going to be a good thing. And they spent a lot of time foisting these things on Mum, saying, you know, 'Have a go with this.' And the one system that I thought seemed possible, they weren't going to be able to fund and it wasn't going to actually come out until July. So what the point in spending three hours here going through that was, I have absolutely no idea.
I talked a bit to them about funding, because funding is something I know quite a lot about. And they were very, very unaware of the sources of funding that were available to them. And in fact over the course of the year I passed on quite a lot of funding information to various people and I hope that might be of use.
The other thing they did was they kept downloading software onto Mum's computer. Well, the size of these programmes is absolutely massive and when you've got relatively un-technically minded people downloading software onto your machine, perhaps they don't know that the effect of it is actually to completely mess up your machine. Mum's computer was quite a lifeline to her and being able to go onto the internet and look at art. Again they, basically Mum's computer just gave up, and we ended up getting a new one and I ended up having people out to come and look at it because these programmes were just interfering with all the things that were on there. I just find that so utterly na've.
When she went to the hospice I drew up a kind of - I don't know what you'd call it - but just a kind of sheet of regular things that she might need, a sort of flip chart of things she might need and things she could point to for people that really couldn't attempt to understand her. And I remember showing this to the speech therapist, I was really quite proud of it, it had taken me quite a long time to do, and it was all colour co-ordinated, and she said something really dismissive to me like, 'Oh well, there are better things than this,' or something I thought well, it would've been helpful if you'd offered them. And Mum asked about Makaton charts which were sort of picture charts, which again, if you're a visual and not a verbal person, is actually a really good way to communicate and to communicate quickly. And they were never forthcoming.
Footnote' Makaton is a system of signing and symbol use for people with communication difficulties. See www.makaton.org
Some people were very positive about Lightwriters (small hand-held computers with a keyboard, display screen and voice software), but others found them hard to use. One man preferred a 'Say-it! SAM' device with a touch screen and stylus. Several people talked about making jokes and making people laugh with their voice software.
He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get...
He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get...
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Chris' Ken had started to go to speech therapy because his voice was going. It started going all crackly, didn't it? And then, yeah, I think they must have got in touch with us through her. She was very nice, wasn't she? She suggested, because Ken was working then, that he have a 'Say-it! SAM', which is a hand-held little thing. It's about so big, isn't it? It's got a little touch screen, and you have a little stylus thing, which we got through Access to Work.
Chris' Well, the company he worked for, they paid 65 per cent of it, and Access to Work paid the rest. It was very good. Again, it was a very electronic voice like his Lightwriter. But because Ken's hands was getting weak it was hard to hold the pencil. Oh, equally because it done more than just talk, it was a bit like a little mini computer, you had to get into the right programme. And by the time Ken had done all that - I mean, we went to a wedding, didn't we, a wedding reception [both laugh], and this woman Ken worked with was sitting talking to him, and by the time Ken had typed out what he wanted to say, she'd got up and gone to speak to somebody else [laughs]. And we found it not particularly successful, did we? Ken used it more for playing games on than anything, didn't you? We'd met another lady with MND and she'd got one of these. And so we asked the speech therapist if we could have one [coughing]. Which they got within a week, I think, didn't they? And that's been our lifesaver, because obviously now Ken can't talk hardly at all. And you've got quite quick on it, haven't you? Because he has to use his left hand, being right-handed. But you've adapted really well, haven't you? So I'd recommend anybody that it affects their voice to get one of those straight away, because it really is good, isn't it? We take it everywhere with us.
And I guess if you have it early, before you are totally dependent on it, you can practise.
Chris' That's right, you practise. And Ken's got, you know, it's got a keyboard like a typewriter. So it's - and it sings Happy Birthday [laughs], national anthems [coughing]. It's got a little button where if Ken wants my attention - I think that makes different noises, doesn't it? Ken has a Teletubby noise--
Ken' Uh-oh.
Chris' Like that, which can be very irritating [laughs]. But so that's been good, hasn't it?
The MND Association provided a voice amplifier and a Lightwriter so he could talk to his mother...
The MND Association provided a voice amplifier and a Lightwriter so he could talk to his mother...
Age at interview: 62
Sex: Male
Age at diagnosis: 53
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Okay, I just want to ask you about the lightwriter. You use a LightWriter sometimes do you?
Mainly when I'm with my mother. Mum, God bless her, is now in her 91st, or she is 91 and she'll be 92 next January. She's deaf and she's been deaf for a long time so I was provided with a Lightwriter by the MND Association to make it easier for me to have conversations with my mother. I can't goin to details on camera. I'll talk to you about my mother afterwards.
Okay. And what's it like using the light writer?
I find it fairly easy, straightforward. It's a qwerty keyboard and you type in what you say and you hit the button and then it speaks for you. It's also got a narrow screen where you can see what you're typing and the person sitting opposite can also read what you're typing because it's a double sided screen. Although it's only about that wide and approximately that long. It's a very good aid. Unfortunately, again, they're very difficult to get hold of through social services and the NHS.
I had, I do have a voice amplifier. I do use it if I'm in a crowd because my voice isn't strong enough and basically it's a little amplifier, a 9v battery and a microphone and I can shout as loud as I want to [laughs].
Where did you get that from?
The MNDA and that will be going back shortly, if it hasn't already gone back.
Did you try to get one through the social services, or the health services?
No, that was all from the - again because of my mother being deaf. It worked for a little while but soon, well, Mum she had a month, quite quickly. So we needed something else and that might turn out to be the answer. The only problem with them, the one I've got has an American accent. I've got a favourite joke when I'm out, I programme it to say when I'm in my power chair, 'I am a nude Dalek.' [laughs]. Sometimes it goes down well, other times people think I'm mad. But they are entitled to their opinions, and so long as at the end of the day no-one is offended, I am happy.
Some people were using more elaborate computer voice software programmes, some of which can be used by people who cannot use their hands to type. One woman was using a programme called EZ keys with a chin switch. Another had downloaded NextUp software from the internet. Whilst one liked the American accent, the other had chosen an English accent. Both felt liberated by the software to express things as they wanted.
After some frustrating failed experiments with voice software, she successfully uses a system...
After some frustrating failed experiments with voice software, she successfully uses a system...
Age at interview: 41
Sex: Female
Age at diagnosis: 34
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There's one piece of equipment I would recommend to everyone with MND and that's a computer. Having been an extremely active woman, losing the use of my arms was devastating. I was also a very tactile person and missed hugging the children most of all. Then I started to miss practical things like using my computer, reading books and newspapers, writing letters and everything else that we all take for granted.
The first piece of equipment I asked for was a page turner to enable me to read. My MNDA visitor told me that they were ineffective and very expensive. With a young baby and myself to tend to, my carer didn't have time to sit with me and turn pages over. So reading was OUT and how I missed that. I consoled myself with audio books but they weren't the same as seeing the words and being able to go back and read bits again.
I contacted my local physical disabilities day care centre and they gave me a program and switch so I wouldn't need to use my hands to work my computer. Both the program and switch were totally wrong for me and after a few frustrating attempts I gave up using my computer. I had made friends with people here, in Australia and America all with MND, via email and chat rooms and was sad to lose that contact. Unfortunately, I did not pursue an alternative at that time because I was having so many other problems.
My speech was also deteriorating. My speech therapist gave me a Lightwriter with a pressure switch that I operated with my foot. The pressure on the switch constantly had to be adjusted with a screwdriver which was another unbearable frustration. It was easier to repeat myself umpteen times or try to spell words out, than use the Lightwriter.
So I spent a few years without a computer during which time I was depressed and bored. Then my MNDA visitor said that she had seen a man with MND using a laptop with a chin switch. She arranged for a specialist computer company to come to my home and demonstrate and with the help of the MNDA and a couple of other charities, I was able to purchase a laptop, a program called EZ Keys, a chin switch and have some training.
I'm never bored anymore and I believe technology has saved me. I read e-books and it's fantastic being able to read again. I have developed a passion for writing and am writing my story and some articles which I hope will be published. As my body has become progressively disabled I feel that my mind has become sharper and I enjoy a good mental challenge!
She misses being able to talk, laugh and shout, but she loves her voice software and the freedom...
She misses being able to talk, laugh and shout, but she loves her voice software and the freedom...
Age at interview: 63
Sex: Female
Age at diagnosis: 62
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Within a few weeks of the diagnosis, friends had provided me with a lightweight laptop with a text-to-voice programme using American software. I now have an English voice, 'Audrey', and she is speaking now. Because I have been a typist for years, it was second nature to convert to this way of communicating. Within 6 months I had forgotten what my own voice sounded like, and while typing I could forget my disability more or less. The amazing thing is that a young friend of mine (now 19), who as a child was unable to communicate effectively, heard of my diagnosis and felt a kinship with my new disability. It was he who found the software programme which enables me to speak via the computer. Trial voices can be downloaded from www.NextUp.com and tried for a short period free of charge. The software including the English voice costs under '100. The company is very helpful and prompt with their replies to queries. I have experienced mixed reactions from friends. Some consider Audrey is not unlike my old voice. But some friends prefer to sit alongside me and watch the typing on the screen, and have a conversation that way. I really do miss not being able to laugh or call or shout, but whilst I have the computer in front of me it does help me to forget that I cannot speak, and I feel less frustrated. Obviously it is not suitable for all occasions because of its size and the need to be sitting. For example, I cannot take the laptop into shops or out walking. But it is so useful for hospital and doctor's appointments. I can tell them in my own words rather than scribbling my questions and answers. I was offered a 'light-writer' at the Hospital which is free to patients and is funded by the MND Association, but it is old technology now and wasn't right for me because I am a typist [laughs]. The next generation are growing up with computers so future patients will need to be offered laptops and not 'light-writers'. I hope the MNDA will help fund them.
My message to other people living with MND is to learn to type because it is likely that as your illness progresses, you may lose the ability to speak. For people caring for a family member diagnosed with MND, try to be patient and sit down with them for conversations each day even if they can't communicate through a computer like me. Not being able to talk is so isolating. I really miss not being able to talk on the phone to my grown-up children and join in the family discussions over the dinner table. My 6-year-old granddaughter said just recently she misses the old Nanny, and followed it up with a lovely letter saying that she knows I may not get better and she is finding it difficult to talk to my computer. She is an excellent reader and she prefers to watch the screen. We have little games with the various American voices, listening to how words and numbers sound. This helps break down the barrier.
However, various other technological developments were suggested to help people with communication difficulties.
More needs to be done to raise awareness of the needs of speech-impaired people, and ways need to...
More needs to be done to raise awareness of the needs of speech-impaired people, and ways need to...
Age at interview: 63
Sex: Female
Age at diagnosis: 62
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I have been incredibly lucky to have a friend who bought me a very good laptop and another friend provided the software voice. However that is not the end of it. Everywhere there are enormous difficulties. No one seems to realise there are people who can't talk. Deafness is so well catered for and recognised but there are no options for speech impaired people. The internet is my lifeline - my way of communicating with my friends, family and businesses day-to-day. But the businesses always insist on telephone numbers. How can we get them to be more aware of the speech impaired? We still have bank accounts and need all the things that we had before. There seems to be no hands-free telephone system ideally compatible for use with a laptop and voice. BT used to market one but it is not in production anymore. People like me need a handset with a good microphone that can sit or hook on to the laptop. It is crucial that the receiver hears the tapping on the laptop so they wait for the speech. I have a pre-defined phrase set up so that I introduce myself and my synthesised voice when I answer the call. But without the right handset, it is fraught with difficulties.
He'd like to see a keyboard you can use on the TV set so other people can share in what you're...
He'd like to see a keyboard you can use on the TV set so other people can share in what you're...
Age at interview: 59
Sex: Male
Age at diagnosis: 55
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OK. And now you use the computer with an aid?
The aid is a rollerball mouse and on-screen keyboard. That is becoming more difficult now, and I'm going to be in touch with - did I mention the charity Abilitynet? I'll be in touch with them very soon to see if there's anything I can do with my feet. And we also have to think, that as my speech deteriorates we have to find a means of communicating. Now, at the moment there are one or two different keyboards that we're trying, and they're very successful. But it means everybody else must sit behind you when you're trying to take part in the conversation. But it doesn't work like that. So I'm looking at trying to put a keyboard on the TV set. I don't think it will be impossible, but I haven't yet found anybody that can do it. And that way I could sit here with the family and if I wanted to say anything, I could put it on the TV. But we'll get there.
Some people had problems during hospital stays, especially in units where staff were not used to caring for people with communication difficulties. Even in specialist neurological wards the experience was not always good. Several carers had been glad to be there to help their relative communicate, but had sometimes found it difficult to get staff to listen and allow them to help. (The MND Association is keen to hear from anyone experiencing such problems. When someone is admitted to hospital, an MND regional care development adviser can contact the ward with the family's permission, and offer advice and support to staff not used to caring for someone with MND).
He understands why staff want to talk directly with patients, but sometimes his wife found it...
He understands why staff want to talk directly with patients, but sometimes his wife found it...
Age at interview: 59
Sex: Male
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I think in some respects we are perhaps at this time the victim of our own desires to be at all times politically correct. We know that all of us have got things wrong in the past. The wheelchair user used to complain that people used to address the questions to the person pushing the wheelchair rather than the person using the wheelchair, 'Does he take sugar' syndrome. I think we've actually perhaps gone too far the other way. There are times when the healthcare professional is talking to a patient, this is a difficult one I do appreciate that a relative or carer may be trying to intervene. That intervention may not always be appropriate. It could be that they, they've got their agenda or their view or whatever. But they do need to be aware that there are conditions whereby the patient cannot communicate easily and need to, and need to pass that responsibility to somebody else.
Healthcare professional therefore, needs to be aware that that situation could exist. That a carer trying to intervene may not always be acting inappropriately. I think in the situation such as a hospital that is probably more readily avoidable by placing a suitable notice on notes.
There are alerts, there are flags, there are various things that warn of perhaps an allergy to penicillin. There could be a similar system that requires any professional dealing with this patient to read the notes such and such. It could just be instead of a red flag for no penicillin there could be a blue flag which says there is something special about this patient. You need to be aware of whatever. And there'd be a particular place perhaps inside the front cover or back cover where these special notes are recorded. Communication difficulties whatever, appointed agent, representative, whatever could actually be named with the alternatives.
When you've got professionals dealing in isolation it is a little bit more difficult. That's really more down to the individual. There have been occasions where the professional might have been a little strident in dealing with people, say an attitude of when I've tried to intervene taking the attitude, 'I know what I'm doing'. And once or twice I've had to be less than gentle in the way I said, 'I'm sorry you do not know what you're doing. Please listen to me.' But no lasting harm was done.
It was, my concern is only that professionals need to be aware that there can be circumstances where a patient can have difficulty in communicating. And the patient will not always be the first to say or to try communicate or indicate that they have a difficulty in communication. They will instinctively try to communicate and in so doing stress themselves which is what happened more than once.
A nurse told her she wasn't needed on the ward, but the doctor had to ask her in because he...
A nurse told her she wasn't needed on the ward, but the doctor had to ask her in because he...
Age at interview: 54
Sex: Male
Age at diagnosis: 52
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Our friend said, 'They've taken him onto the ward, Gill, you know.' And I said, 'Well, I'd better go down.' Because at that time Mike's speech, it was probably only myself, really, who could really understand what he was saying, you know. Because I'm with him all the time, I could still understand. So I went down and the sister was outside of the ward, and I said, 'Excuse me.' I said, 'You don't mind if I just go into the ward, do you?' I said, 'You know, the doctor's with my husband,' I said, 'and he'll not be able to understand what he's saying.' To which she responded, 'He's managing very well, thank you very much.' And then the next minute the doctor came out. He said, 'Mrs Bitcon?' I said, 'Yes.' He said, 'Could you come in? There's something I can't understand what your husband's trying to say.'
At the same time, many felt it was important for others to remember to involve people in conversation, especially in social situations but also in hospital stays and appointments. Comments included:
“If you meet somebody in a wheelchair, talk to the person and not the person pushing it.”
“You are 'compos mentis', you do understand and you are normal. All that's wrong is your voice.”
“You have to be very assertive, to make sure that he is still involved, because people do tend to want to speak to me rather than to speak to Mike.”
In addition to people who had speech problems, a few people with weakness in their arms or hands had looked at technological solutions to help them communicate. In particular, voice recognition software can make it much easier for people to continue using a computer by dictating. The software then converts the sound of the voice to text on the computer. Most found it fairly easy to use, even while using a ventilator mask, but one man said it had trouble recognising his wife's Irish accent. People used it for emails, taking part in internet forums and creative writing, and one man was using it to continue taking the minutes for his political association. Another explained how he used it to give talks and write for newsletters.
He uses voice recognition software, which helps him prepare written documents and presentations...
He uses voice recognition software, which helps him prepare written documents and presentations...
Age at interview: 60
Sex: Male
Age at diagnosis: 56
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Since I stopped being able to use my arm controls, the best thing I've done is I got Dragon. There are two or three programmes which convert voice into print, but the best one that I've got seems to be Dragon. There's an IBM one which people have not recommended so strongly. I don't know myself personally, but certainly I use Dragon Preferred. There's a Dragon Professional which is more for slightly different applications, I think. Dragon Preferred seems to do everything and anything that I want. And it's very good at recognising. I read it some of Alice in Wonderland or something like this, it seemed to be able to pick up my voice. It has its moments when I get frustrated with it, but not very. You can delete, you can spell things, you can check things and correct things. It'll do - like if I say my address, out comes my whole address, so I don't have to spell it out. My postcode, my telephone number, things like that. Yes, it learns and it improves.
Dragon is wonderful and I would recommend that to anybody. It's taken over from where I was with the arm control. When I was able, I was typing things one-fingered. But I got to the stage where I couldn't use a mouse any more. And that's the point where I took over Dragon. It's great because I've been writing a newsletter for a local pressure group I'm in. And I write out the reports for a local history society. And what else? I give talks. We can do Powerpoint on it. Dragon has a solution to move the mouse around to actually do Powerpoint. I can't pick up pictures and things, because I can't use a mouse like that. That's probably me not being able to do it, rather than Dragon. It probably would, I just don't know how to do it. Actually that's something that the MNDA gave me, they gave me Dragon. They took pity on me because they knew that we were paying for everything. Basically we were spending our pension to get things and they took pity on me. And they gave me two things. They gave me a proportion of the money towards my shower - not all of it, and not all of the equipment. And they gave me this Dragon Preferred, which was really very, very helpful. But at the time we'd run out of money.
The MND Association
website provides a range of helpful information resources, including the following information sheets, 7C: Speech and communication support and 12D: Voice banking.
They also offer a Communication Aids Service which can guide people on ways to access suitable aids and provides a limited range of communication aids on loan. See their
Getting help area on their website.
The charity Connect offers advice, training and resources to help people with speech difficulties to communicate. Their main focus is people whose communication problems are caused by stroke, but some of their resources are also useful for people living with other conditions.
Last reviewed August 2017.
Last updated August 2017.
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