Motor Neurone Disease (MND)

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.
 

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.

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.
 

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.
 

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!
 

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.
 

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.
 

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.