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Ken - Interview 34

Age at interview: 59
Age at diagnosis: 58
Brief Outline: Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.
Background: Ken (aged 59) and Chris (aged 60) are a married couple with 3 adult children. Ken retired as a soft furnishing workroom manager. Ethnic background/nationality' White British.

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(Ken's speech has been affected. He tells his story through his wife, Chris)

Ken's brother died of MND ten years ago. At the time the family did not know it could be inherited. About two years ago Ken started coughing a lot and had a trickling feeling at the back of his throat. He had a hospital appointment and was asked if there was any family history of neurological problems. When he mentioned his brother the doctor immediately suspected it might be MND. This was confirmed after tests just under a year ago (2006). Although they had started to suspect this might be the diagnosis it was still a terrible shock and they did not feel the doctor who told them was very sympathetic. The worst thing was telling their children. Ken and Chris worry about whether anyone else in the family will inherit it, but hope that if they do a cure will have been found by then.

Ken's employers were very supportive; they changed his work to be more computer-based and moved his office downstairs. They continued paying him full-time for part-time hours until he retired very recently. Access to Work helped arrange transport to work and provided a 'Say-it! SAM' hand-held communication device. The speech therapist, occupational therapist and local MND Association adviser have all been very helpful in organising adaptations to the house and equipment, including a Lightwriter, a hoist, a downstairs shower, a car seat and slideboards. Chris also continued working until she recently reached 60.

The MND Association has also helped with claiming benefits such as Disability Living Allowance, Carer's Allowance and Incapacity Benefit. Chris found all the paperwork and the restrictions on when and how you could apply very challenging, and appreciated the MND Association's help. She finds it especially hard seeing her and Ken's roles reversed, where he used to be the strong one and now he's dependent on her. It is sad that he can't even give her a hug any more, but together they use humour to try to overcome sad or difficult situations. They try not to think about the future as it is too upsetting. 

They try to keep life as normal as possible - going shopping, visiting friends, taking holidays, and spending time with their children. Their adult son has moved back home, and their daughters visit often. Ken has a PEG as he was finding it difficult to eat without choking, but the family sit round the table together for meals. They have found it helps to have milestones to aim for. When Ken was first diagnosed, they were looking forward to their daughter's wedding. He did the bride's father's speech in writing and projected it onto a screen. Then they looked forward to the birth of their first granddaughter, and now they are planning a holiday with all the family. 

 
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They sit round the table together for meals and Ken does his PEG feed. At Christmas he stuck...

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We tend to treat it as a meal, so that Ken sits at the table with me and our son. So we sit and eat our meal and Ken does his feed. We joke about it, don't we? [laughs] Christmas time, Ken made up jokey labels and stuck them on the bottle, and put a label on your Zimmer frame, didn't you? Said people could hire it if they had too much to drink, and things like that. We try to sort of lead a normal life, don't we?

 
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Sometimes crushed tablets get stuck in the PEG tube. One day when he was trying to put cod liver...

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Even the tablets for motor neurone is a tablet, which I think is absolutely ridiculous. So we have to crush everything to put it down the tube, which then sometimes we get a bit, a bit of a blockage, don't we? [Ken laughs] Because no matter how much you crush it, it only needs a little like a bead of sugar size to stop it. We've had a few instances with that, haven't we, over the ceiling. Ken's always taken cod liver oil, always, for years, haven't you? I mean me, I take a capsule, but Ken takes it by the spoonful, which would make me retch. So now he has that down his PEG [Both laugh]. And you was here - was it here on your own, or was our son here? And he couldn't push the plunger. And so he took it out the tube to push it, and it shot across the ceiling, over the lampshade, on the floor, up the door. It went everywhere - I mean it's only a couple of spoonfuls, isn't it? So our son managed to wipe it all off the ceiling, but we now have a nice yellow patch [laughs] on the ceiling. The next day Ken decided to show me what happened, but not meaning to, so he shot it in a different direction this time, didn't you?

Footnote' The MND Association generally advises people to put only the specially prepared feed through the tube, and not other forms of fluid, including liquidised food, in case the tube gets blocked or damaged.

 
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He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise that sometimes MND can be inherited. [Ken is unable to speak].

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Where do we start, really? Well, ten years ago Ken's brother died of MND. He had it for five years. It affected him very differently to Ken. We didn't know at that time that there was a hereditary strain, so when Ken was diagnosed it was a real shock. Ken had been going to the hospital with problems with his sinuses, because he felt like he had trickling down the back of his throat, and that was getting worse. So he'd been going to the hospital to have various head scans and X-rays and all that sort of thing. But then in 2005, about September time, he started, if he was eating anything, he would involuntary cough. And so while he was at work he always took a packed lunch. And he got to where he would go to lunch later so that he didn't have to sit with anyone, because he knew that he'd start coughing. And we just put it all down to all this phlegm he was building up in the back of his throat. And we had a hospital appointment and Ken happened to mention - and he sort of piled it on a bit, really, because we felt we wasn't getting anywhere with the hospital. And we thought if he made it sound - well, it was getting bad - but if we made it sound worse they might speed things up. And so Ken said about his coughing food and that, and then they said, 'Was there any neurological problems in the family?' So we mentioned John [Ken's brother]. Well, with them it started sending out alarm bells. And the doctor got up and went and brought some other people in and they sort of gave Ken a, got him to do various things, didn't they, with your arms and that. And then they started looking up on their computer. And I said, 'Well, MND isn't hereditary.' And the doctor said, 'Yes, it can be.' It's a very small percentage, apparently. But they would send Ken for tests and things to confirm it.
 
 

They put a note in their Christmas cards explaining Ken's diagnosis. Most friends have been...

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Well, we've got friends - well, actually we've got friends that live down in Somerset, who we've rare-, you know, we communicate by the odd phone call, Christmas cards, that type of thing. And since they found out about Ken, I mean, she phones us on a regular basis now, where we would, we could go months and months and not hear from them. And they've got another friend that they go and stay with. And they did come round to see you, didn't they? And we hadn't seen them, you know, for a few years, really. So I thought that was quite nice. We've got other friends that we email, and they keep saying they're going to come. But I think, I don't think it's more that they don't want to, it's just, you know, I bumped into her in the town and she said, 'Oh, I didn't know if Ken would want visitors.' And I said, 'Oh, yeah, he likes visit-.' 'Oh, well, we will come then.'

So, and at Christmas time we wrote a sort of a standard letter that we could post to everybody, the people that we hadn't told about Ken. And we just had a letter and a birthday card and they want to come and see you, don't they? And again they were just old neighbours that, you know, you sort of keep in touch but not - and so they're going to come, aren't they? We've just got to get in touch with her and arrange some sort of date. I don't think anybody's really backed off, have they? But we've been more family orientated than friends.

 

They were surprised he was discharged so soon after the PEG procedure. No-one showed them what to...

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Have you been happy with how the, the PEG has turned out?

Oh, it's been very good, hasn't it? We've had - Ken went and had it done in June, didn't you? Sort of backtracking here. It was just, we took him in in the morning. At that stage Ken was still quite, could walk, couldn't you? Took him in in the morning. And they were going to give him a local anaesthetic to do it. And then went back about half past 5, me and my son went to pick him up. And I've got to say I didn't think it was handled very well at all.

Because it was in a ward that closes, you know, a day thing, I felt like - because Ken was about the last person to leave - the nurse just came along, thrust a leaflet in my hand, said, 'Don't use it' - was it till so many hours or something? I said, 'But nobody's shown me what to do yet.' The dietitian wasn't coming till the next morning. And so she said, 'Oh, that's all right. You just read the leaflets. Off you go.' And that was it. Well, Ken could hardly walk. He was like doubled up, weren't you? And there was a wheelchair sitting in the corridor, which I wanted to use, but Ken being strong-willed said, 'No.' So he managed to crawl - luckily we were parked outside [laughs] - crawl to the car. How we got him in and out of it I do not know. Managed to get you upstairs to bed. I think you went, went asleep, didn't you? Our son went out for a few hours in the evening. When Ken woke up, he was in so much pain. He - well, it was awful. It's the worst experience of my life - didn't you? Oh, I just didn't know what to do. I really was, you know. So I phoned the doctor. Of course now it's out of hours, isn't it, which you have to explain to some woman on the end of the phone the problem. She then has to transfer it to a doctor, who then decides whether they're going to come out or not. Well, of course by now, hours - did I give you? Oh, that's it, they said to give Ken painkillers. Well, of course he can't swallow very well at this stage. I don't know if I did manage to get something down you. I don't know, I can't remember now. In the meanwhile our son comes home. I didn't know whether to phone an ambulance - because Ken was, well, it was awful. He was crying, I was crying. Eventually they phoned back and said a doctor would come. I think from phoning to when a doctor came must have been about three hours. And then two of them turned up. They came up, examined Ken. I think at some stage we had got hold of some painkillers from somewhere, hadn't we? Which I don't know if you'd taken and then they'd calmed you down a bit, but then obviously they wore off. And in the end they gave Ken an injection in his leg, which worked pretty quick, didn't it? And then Ken went asleep. But I must admit I feel that Ken should have stayed in hospital overnight. When the dietitian came the next day, which again was a very nice lady, and she said all the hospitals that she'd worked in, they do keep you in overnight. She said, 'I was really surprised that they'd sent Ken home.' And it's normal to get all this pain, because it disturbs all the stomach and they have to push the tube out, not in. And you was really, you didn't have anything... And then she showed me how to do the feed, didn't she? And you was really poorly for a week, wasn't you? It took Ken a good week to get over it.

 
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Their staircase was too awkward for a stair lift so they moved the bedroom downstairs and had a new bathroom. It was a long and costly process, but the MND Association helped. [Ken is unable to speak].

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Our dining room is now our bedroom, because Ken was finding trouble getting up the stairs. We toyed with a stairlift, but because our stairs curve it wasn't practical, and there was nowhere for it to go when we got to the top of the stairs because there was a door. The doors are quite wide, but when you get to the top of the stairs it curves, which makes the lift more expensive, because it has to be made. And of course it goes on to our bathroom door, and equally at the bottom of the stairs on to the lounge door. And it has to go past the stairs. So we had to scrap that idea, didn't we? So we decided, we took all the dining room furniture out. Luckily we've got a separate dining room. The occupational therapist lady got Ken a special bed. So we bought me another, an ordinary single bed. And we decided to have a shower put in. The occupational therapist thought that they could get it done on the National Health. But it was an 18-month wait, which we haven't got. So we decided we would buy one ourself. So Ken got on the websites and looked them all up. But of course none of them will give you prices until you actually ask them to come out and visit. Then we decided perhaps the best idea would be a sit-in bath. Which again, trying to find prices on the website was becoming a bit of a nightmare. So in the end I sent off to three companies that advertised in the paper and got all their brochures. In the meantime of that all happening, Motor Neurone [Association] said that if we got the price that they would pay, contribute towards it. So Ken chose which one he thought was best for him, and got them to quote us a price eventually, which we told the Motor Neurone people. And we have a plumber in the family and he said he would fit it in cheaper than the bath people would. Motor Neurone people said that they would pay for the whole lot, which was very nice of them. But I should think all in all from trying to get leaflets and getting prices and actually ordering the bath, the company wouldn't order the bath until they got the money. And although they were a very helpful company, they were very nice, and the Motor Neurone people paid for it as soon as they gave us a price, I should think all in all it must have taken a good six months to get it up and set in, which luckily Ken was still getting upstairs to the bathroom. And we've got a walk-in shower, which made it easier for you, didn't it? But it was the getting upstairs was the hard part'. So now we sleep in the dining room. I still call it the dining room. It's hard to call it our bedroom, isn't it? That's made life a lot easier now.
 
 
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Using Access to Work for taxis was a great help once they'd sorted out how to claim the fares...

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So I got in touch with them [Access to Work] on Monday and said about getting Ken to work by taxi. And they were brilliant. I had to get three quotes from different companies, tell them what it was over the phone. I think they got back the next day, agreed that they would pay the majority of it, and we had to pay '2.25 for each trip. It cost '35 a day to get Ken there and back and we had to pay '2.25 for each trip. So it was '4.50 a day, which we felt was quite good, because obviously we were paying for the car and petrol and everything.

Have you given up the car?

Yeah, yeah. So we set that up, and so by the time Ken went back to work it was up and running. Access to Work needed an invoice first before they would pay, which meant the taxi company would be paid behind. Ken would travel for a week, they wouldn't get their money till a week later. They weren't willing to do that. So in the end we agreed to pay it, and we claimed the money back ourself. There was a bit of a mix-up at the start with our bank number, so we must have paid it for about a month before we got any money back, but we did get it all back. And once it was up and running, we sent the invoice off weekly, within a few days it was back in our bank account. So that worked really well, didn't it? And the taxi driver, because we got to know him quite well, didn't we? He was very nice'We got quite friendly with him in the end, he was really nice and helpful. And so he'd pick Ken up at half past seven in the morning. So that was a bit, we had to get up early to get Ken showered and dressed, because I needed to help him, get him downstairs, get him his breakfast. I had to get you ready, didn't I? So then Ken would go off in the taxi and I used to go off and catch the bus, because I don't drive unfortunately.

 
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He gave the speech at his daughter's wedding using a laptop computer and a projector. [Ken is...

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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.

 

He finds his 'Say-it! SAM' device quicker than a Lightwriter and more fun. Other people don't get...

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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?

 
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Her husband's emotional reactions have become quite different, and he laughs and cries...

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Well, I think that is part of the illness, your emotions. I mean, Ken cries very easy, which you would never have done years ago. Or you laugh. I mean sometimes Ken laughs at things, and me and my son sit here and I think, 'That isn't particularly funny', you know. Or we'll be in the kitchen, and of course when Ken laughs it comes out with a bit of a funny noise, and I think there's something wrong with him. And I come rushing in here and he's just laughing at something stupid on the telly. But I think you find things more funny than crying really, don't you?

Have you ever taken any medication, any antidepressants or anything to deal with it?

No, you're not one for taking pills and potions really, are you? Ken's been a vegetarian for years. He's always been fussy about what he puts into his body.

 

Ken is happy to have day care at the hospice, but she finds it hard to see him there and thinks...

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Chris' Well, the Macmillan nurse, she just came to introduce herself. And she's there if we need her. She doesn't come on a, you know, because Ken doesn't need nursing as such, do you? But I think she just came to get to know us, because obviously further down the line we may need her a bit more. She arranged, asked Ken if he wanted to go to the day centre, which you agreed to, didn't you? So she set all that up for us. You've only been twice, because then you was ill last week, wasn't you? So you didn't go. So she set that up. And again she's a very nice lady. Ken emails her sometimes, or she's on the end of the phone if I need her.

And will the hospice step in if necessary for overnight stays?

Chris' No, it's only a day centre. Nobody stays at this particular one. It's really to give us a break from one another, to give me a bit of a break, a change of scenery for Ken. [pause for Ken typing].

Ken' You didn't like the hospice.

Chris' I didn't, no, I agree. It's the same one that Ken's brother went to. He enjoyed going, didn't he? He took up painting when he was there. And I think - did he just go once a week? I think he did, and they used to pick him up. And because our son was on holiday, we decided that he would take Ken, which he done, didn't he, the first day. And then he picked me up from work. And he said, 'Oh, I didn't like leaving Dad there. All these old people just sitting around in chairs.' So then I went with Ken, [son's name], our son to pick Ken up. I must admit we got there a little bit late because we got behind a tractor [laughs]. And so you know what it's like when you want to get somewhere. And so when I arrived people were being picked up. And all I could see was Ken in a chair and lots of old ladies with perms, like the blue-rinse brigade. And I thought, 'That's it. He's not coming here any more.' And I got all upset. But Ken wanted to go again, because they were going to massage his legs the next week. So I let him go again. Again our son took him and I went to pick him up with [son's name], our son. And we got there a little bit earlier, and Ken was playing bowls. A lady had picked, playing bowls with you, and he'd won twice. And he was playing with his left hand. So I said, 'The others couldn't have been very good.' But they'd given him a massage. And the nurses there are very nice. And I don't mean to be unkind, and it sounds really horrible, but I feel, they're all volunteer workers, but sometimes I feel they're a bit overenthusiastic, you know. I just feel - like they were playing bowls and the lady that was doing it, obviously she must go about every day, every week, I don't know, but Ken rolled his bowl and it was all this, 'Oh, well done, Ken!' and all this. And I just feel like, you know, you're being, not, I don't know what I mean really, but'

A bit patronising?

Chris' Yeah. And obviously they don't, you know - and they come round with tea and cake. And I had a cup of tea and a bit of cake. And it is a nice place, isn't it?

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