Ken - Interview 15
More about me...
Ken first noticed symptoms about 6 years ago in 2001. The first thing he noticed was a heavy, stiff feeling in his left arm when he woke up in the morning. Then he started to feel butterflies in his tummy for no obvious reason. He went to see his GP when he started getting cramps, but the GP did not think it was anything unusual. Not long afterwards he went back to the GP, because he was losing strength in the muscles of his right hand and could not operate the remote control for his car. This time the GP was immediately concerned and referred him to a neurologist. At the time, the GP mentioned it might be a trapped nerve, although looking back Ken and his wife wondered if he knew more than he was saying.
Ken was admitted for tests in the spring 5 years ago, and was told it was a clear diagnosis of MND. His wife was more upset at the time than he was. At first he did not want to know the detail of what to expect, but by the time they had a further consultation a week later at a specialist clinic he felt ready to ask more questions. He went back to work as a teacher, but by this time he was having trouble writing on the board in class, and very quickly decided to retire. His wife also took retirement. They decided to enjoy several holidays together while they still could.
Gradually his left arm also became weaker, and his occupational therapist provided arm supports to help him eat and use the computer. He found these really useful in maintaining his independence for as long as possible. His legs were also becoming weaker, and he started to need help getting up, but he could still walk independently until two years ago. Now at home they have a hoist, a lift and a wet room, and a special toilet which enables him to wash himself. They have had a car (a people carrier) specially adapted. He has a wheelchair which he can operate with his chin, and an infrared remote control he can use to operate electrical equipment at home, such as the TV and lights. He has found some useful voice recognition software which converts his speech into text.
At present his wife provides all his care at home, but she does get very tired. He has had one respite stay in a hospice, and they are considering getting more help in at home. Both he and his wife still sing in choirs, and he would like her to be able to continue to go out and sing even when he becomes more dependent. He has been generally very happy with the care and services provided, and has always found staff willing to answer any questions they can, but of course no-one can answer the question of what causes MND or why people are affected in such different ways. He himself wonders whether exposure to organophospates from farm work in the past had affected him, or possibly a period of stress and depression in his life some time ago. Ken is glad that in his case the condition has progressed more slowly than he originally expected.
He had various tests including a lumbar puncture. He was the only person in the ward not to...
Most of the tests are done to eliminate other possibilities. So you get a lumbar puncture, which I suppose eliminates the possibilities of other cerebral or spinal problems. But nobody with MND needs the lumbar puncture. It's just to eliminate. I was lucky. I was the only person in my ward who didn't have a stinking headache for 24 hours afterwards. They said, 'Drink the water'. They brought me sort of school jugs of water - I don't know, a litre and half of water - and they said, 'You've got to drink two of these in the next hour, and you're not allowed to move,' which is one of those impossibilities, because if you drink three litres of water you certainly need to go to the lavatory. Anyway I did, and I was the only person who didn't seem to have a headache.
The tests are the standard tests. They put little electric probes into you. Some of them are passive and they read the electrical connections, I suppose. The others are active and make various bits of your anatomy twitch, mostly in the legs. It's very disconcerting because you're sitting there and suddenly your leg jumps. And there's no logic to which way it goes, either. It's a bit like starting a steam engine, you don't know whether it will go backwards or forwards. And you get also an MRI scan, which I suppose is to eliminate other things.
Anyway, so the diagnosis was straightforward. I was one of the ones for whom there was no question. I had ALS and it was standard. My readouts showed all the standard features.
He has read up on suggested causes. He worked in farming and wonders whether exposure to sheep dip affected him, or whether it's just chance.
The other are people in Guam, who have a really rather odd diet and they eat fruit bats as part of their diet. This seems to give them toxicity. I think it's toxicity from the fruit the fruit bats eat, which passes through the fruit bats and gets concentrated. And they have about a 200 per cent chance of getting motor neurone disease greater than average. But apart from that, it doesn't seem to be related to race, it doesn't seem to be related to sex, it doesn't seem to be related to whereabouts in the world you live, to diet. I mean, Japanese people who eat fish and rice are just as likely to get it as people in Europe who eat a meat diet or South Americans or whatever. It just seems to be totally - apart from these two clusters. The only other possible cluster, in [county] we don't have many people who work in forestry and farming, but maybe people who worked in forestry and farming or gardening have a higher possibility, which gives you the horrible thought that it might be organophosphates. And I happened, I used as a kid to work on a couple of farms and I've done sheep dipping and things like that in my past. And you wonder whether some days when I was 20, in my 20s, dipping sheep without gloves and without proper protection, as we did in those days, may just have caused it. I don't know. I can't think of anything, but it's the only possibility that sort of sets me apart from ordinary people. I've had a normal diet apart from that - not wonderfully healthy but quite good these days. I don't seem to have done anything else. So it's perhaps my days of working with cattle and sheep, on hill sheep farms, hill cattle farms. I can't think of anything else. Maybe just statistical. I'm the one they choose. Two hundredth thousandth person or something.
The reasons why people in Guam have a high rate of MND are still unclear. A recent paper at the International MND Symposium has presented some evidence that the main risk factor may be toxins in flour made from cycad fruit, rather than consumption of fruit bats, but that a genetic factor may also be important in triggering MND. A summary is available at'
Research suggests there is a higher risk of developing MND amongst footballers and farmworkers, but the reason why is still unclear. The MND Association provides a series of questions and answers at'
He had some liver problems taking riluzole, especially when he was also taking minocycline to...
Are you taking that?
I take that. It has one slight downside, and that is that one of my liver functions, the function that deals with toxicity, is raised. It should be 30, 50, something like this. In mine it's been 130, 180. There was a drug trial that we did for a drug from Japan, which proved to be negative, proved to be totally ineffective, which they worried about, they didn't let me start it the month I was supposed to start it because of this liver function being raised. But I've lived with it for five years. It doesn't seem to have any effect on me. It's only one of the liver functions. I mean, they test for about five things each time I have blood tests, and it's only this toxicity test.
I did go on to a minocycline test, well, I need to be tactful here, I did take minocycline, which is the result of one or two tests, which is currently being tested. And I was put on technically a drug trial. And I was taking it originally because I had a bit of a problem with my skin, which I think is probably related to the other drugs I take. I seem to have flaking skin, itchy skin, itchy forehead. Anyway the minocycline would have perhaps cured that. It may have raised that. I've certainly been off it now for five or six or eight weeks, because it seemed to raise this particular count in my liver. I've recently had another blood test to check if the count has gone down and it was the minocycline. If it hasn't, it's just a cumulative effect of the riluzole. I take nothing else.
Footnote' Mincocyline is an antibiotic normally used for severe acne. Previous research suggested it may delay onset and prolong survival in MND, but the most recent clinical trial results reported in May 2007 have been disappointing. See www.mndassociation.org/research/research_explained/
His arm felt stiff when he woke every morning, and he noticed fasciculations and cramps. His hand...
The first time I went to the doctor with any related symptom was in the October of 2001, and I went because I was getting cramps. Again cramps as I knew were something I'd experienced in childhood, so it wasn't unusual. But I seemed to be getting cramps in unusual muscles. Normally you get it in your toes or in your calf muscles when you're tired. But I was getting it all over the place. Not regularly, not at any kind of point that I could diagnose, it wasn't after exercise or anything like that. And of course the doctors laugh this off, because there are about a hundred causes of cramp, and they basically say, 'Come back if you get anything worse'.
Then in the November, a month later, I started finding it difficult to operate the remote control that opens the doors of the car. And that was quite a stiff little button to press. And I obviously had lost some strength between the fingers and the thumb in my right hand, because when I was trying to press this button it didn't always work. After two or three weeks I sort of got slightly worried that I was losing strength in my hands. So I went to the doctor's just on the off chance. And the doctor I suspect knew a lot more than he said at the time. And he said, oh, that he would send me to the [city hospital], because it might be a trapped nerve. I think he thought it wasn't, looking back at his expression, and I know my wife thought it wasn't either.
The location and design of ramps and dropped kerbs is often a problem but his local council has...
If you have the footrests lower of course, you wouldn't be able to go over any kerbs, because the chair is fitted with a kerb-lifter, which I rather upset my occupational therapist by calling a kerb-crawler. Anyway this kerb-lifter thing works, but if the footrests are in the down position on steep curves, the footrests hit the kerb before the kerb-lifter does.
Again the church I was going to had been very carefully - they'd put a ramp in. Unfortunately nobody had thought that perhaps they needed a ramp from the road, where you unload, into the church, onto the pavement, so that you can get into the church. And I had to go about 200 yards down the road to find a place where there was a drive and a dropped kerb, which was a very steep dropped kerb, simply to get in the church.
Dropped kerbs are a problem. Where we live there's a station, oh, 300 yards away, 200 yards away. And to get to it there are 1, 2, 3, 4, 5, 6, 7 dropped kerbs. One of them wasn't dropped until I asked. Two of them were newly put in and horrendously steep. With my old wheelchair, when I tried to go up it, the front wheels used to come off the ground. And because the other two were on the hill, they were also very steep. So I rang the local authority, who haven't - it's very difficult to work out who do the kerbs, but it turns out to be the county council, which seems to be very illogical. Anyway the county council sent somebody round, who happened to be an ex-pupil of mine, and he and I hatched a plan and so they've done these seven kerbs much better now. It's great. The county have been very good about that.
But there are care homes in [our town], my wife visits a lady who used to be in her choir at a care home in [our town], and as you come out of that there isn't a dropped kerb. And the residents there used to object. So then they put in one, but there isn't one on the other side of the road. So you have to cross up to a place where there's a residence with a garage, and then you go to the next road and there isn't a dropped kerb, so you go up the road to the first house with a garage and cross. It's quite a problem. Some places are brilliant.
When he couldn't use hand controls, he was given a wheelchair with a chin switch. It is better...
But by about a year ago I was getting to the stage where I'd go round a supermarket and I could only turn left. So I was going to the end of the aisles and doing a 270 degree turn to go right, because I didn't have any movement to my right, and I was looking a bit foolish. And the other problem with the wheelchair was it was one which had four wheels attached to a solid frame but with no suspension' If you have rigid wheels with no suspension attached to a very rigid frame, the moment one of the back wheels leaves the ground you lose all the steering. And this became a problem. I didn't hit parked cars, but I was in danger of doing it. I was in danger of falling into the road. I certainly rammed it into walls because I tended to keep to the inside of pavements. And suddenly one of the wheels would lose steering' And wheelchairs don't go across gravel surfaces very well. They certainly don't go across slopes very well and gravel surfaces. But this one would hardly do anything. It struggled to go through doorways where there was a lintel, because one of the wheels would be on the lintel and the other one would be flailing madly in the air, and the wheelchair would suddenly lurch sideways.
And I'm afraid I made a nuisance of myself, a very great nuisance. It was partly because I couldn't operate it very well, but partly the design fault in the wheelchair. And eventually they gave me this one, which the people at the [city hospital], from Medical Physics I think they're called, came out and they put this chin control on, which has been wonderful. People say, 'Did it not take you very long to learn?' Well, it must have taken at least five minutes. The only occasional problem is that it's programmed to be the reverse of the way the hand-operated ones work, because it's much easier to pull the chin towards you to make the thing go forward. So you pull it towards you to make it go forward and you push it away to make it go backwards, which takes two or three minutes to learn and then it's obvious.
There are other controls on it' I can vary the speed. So I can go right up by turning sideways, I'm now on full power, which give me about 4 miles an hour. Or I can go right down to low power, which I use sometimes when coming out of the car backwards, especially if the ramp is a bit sloping, because it means I don't move very large movements at anyone time and I get more control' The only thing I don't have on this, which I had on my hand-controlled, is a horn. But since it was such a useless little horn, it was sort of a high pitched peep, people didn't identify it as a horn anyway. Maybe it was quite good for passing bats, kept them away, but people just generally ignored it. But I’ve still got my voice, so I can ask politely. Unlike a certain lady who goes down the back of our house and shouts abuse at people if they don’t hear her coming. She’s got one of these electric scooters. My wife, who’s deaf, has been hollered at in a rather rude way on several occasions.
The charger on that, have you had any difficulties with the charger?
No. They gave us a small charger and we used that fine. And then they gave us a larger charger, which I decided I would swap back for the smaller one. So they took the large one away. Mainly because we carry it with us, and this thing was about, oh, I don’t know, 30 centimetres square. It was a huge thing, whereas the normal one is probably half that size. The only thing wrong with this wheelchair is, I live in a very hilly town, in winter it’s quite cold as well, and I don’t think this wheelchair gives me very great distance. In town, remembering that I live on the top of a hill and therefore I need to keep a certain amount of charge in the wheelchair before I set off back, I doubt if I’ve got more than about 3 miles distance.
On a flat promenade or somewhere on the coast and we do 5 miles, I can easily do that on the flat in warm weather. The battery doesn’t hold its charge very well in cold weather. You can travel around, and be right down on the emergency red flashing battery, come inside, and it will recover anyway. But it recovers dramatically as it warms up. It’s quite, quite disappointing in that sense that the battery won’t hold its charge. I think that’s just a problem with battery technology. I mean it’s a very heavy wheelchair, because it’s got two batteries, it’s got two driving motors and three other motors on it. It weighs I think about fifteen stone, 100/117 kilos, I can’t remember.
This one has what’s called a gimbal. I would have called it a pivot. And the front wheels are not on the frame, but they’re pivoted in the centre and the front wheels can therefore go up and down. And it makes such a difference….To be honest, unless there are reasons why you need one of those without this gimbal or pivot, they shouldn’t be supplied. They’re quite dangerous really, quite dangerous.
I mean the classic is that I’m delivered to the [city hospital] for an outpatient, and my wife takes me to the place where they say ‘Disabled Unloading’. And between there and the Outpatients Department, which is the main entrance where I go in, there is a ramp, which is newly built for wheelchairs. And the first time I went down, that was in my old wheelchair, my wife drove off because she had to go somewhere to park, and I said, “Fine, I can go down, the doors are automatic, I’ll go down on my own.” And I got halfway down this ramp, which was concrete, and I hit an unusual bump on it. The left rear wheel left the ground and I rammed it into the wall. This was their newly built wheelchair ramp, which was quite steep, and not planar, you need a planar surface. And I had to be rescued by a sort of 15-stone, rugby-playing type, who very kindly hauled this wheelchair back and helped me down the ramp.
I had similar trouble on a wheelchair ramp going into the theatre. Well, I’ve had problems everywhere really. So this new one is much better. The only thing that makes it worse might be that it’s marginally longer. And therefore if you’re going down a narrow corridor and have to swing into a room, sometimes the 2 or 3 inches extra make it difficult.
He has a Clos-o-Mat toilet at home which gives him independence. They are now available in some...
Physiotherapy on his feet helps, so he's disappointed it's not provided locally. The physios have...
He is glad the doctor did not tell him straight away the worst that could happen. No-one can...
So we then went along to the motor neurone disease clinic in [city]. And the nurses and the doctor there were great. They answered all the questions we wanted. I think by then - it was a week later - and by then I was in a position to want to know. Perhaps the week before I didn't necessarily want to know all the details. By then I was getting curious. We didn't learn everything then, obviously I didn't ask all the right questions. And perhaps correctly he didn't tell me all the details of what would go wrong, largely because I suppose nobody knows. I think, as I said, I know probably twenty people with motor neurone disease, and I don't think I know two people who've started the same way or deteriorated the same way. I know people who've gone legs first. I know people who've gone from the side first. I know people who first discovered they couldn't swallow, people who first discovered they couldn't talk, people who fell over for no reason, they just sort of seemed to have had a loss of balance. It's such a weird disease to predict.
He gave up work almost immediately. He enjoyed teaching but the job had changed, so he was glad...
Anyway I gave up work almost immediately. I gave up work a week later. It was quite convenient. It was half-term, all the exam preparation was over. I said goodbye to my A Level groups and GCSE groups. It didn't really matter. And my wife and I decided that, well, she decided to give up work too, and we decided that we would enjoy what little bit of time we had together.
I'm not the sort of person who gets very emotional normally. I tend to be relatively cheerful. I'm the sort of person who's, you know, the glass is half full rather than half empty. I tend to be fairly positive about things. As I said, my first reaction when I knew I had motor neurone disease was thinking, 'Oh, good, I don't have to do five more years of this'. It wasn't as though I didn't enjoy teaching. I enjoyed a lot of it. But teaching was changing. I was old person at this, an old man. I couldn't be bothered with some of the changes. I didn't see the value of them. We'd become pawns for the politicians, so the paperwork consequently increased and increased. And when you, when you've taught for 35, 34, -5 years as I had, these things come round, you know. Somebody with a new broom comes in and wants to change things and you keep becoming an old duffer. You think, 'Oh, that didn't work twenty years ago.' And you catch yourself being an old, a grumpy old man, or a codger. Well, I wasn't grumpy. I've always been quite cheerful.
He uses voice recognition software, which helps him prepare written documents and presentations...
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.
Gradually he found it harder to get up from sitting, and he had several falls. His wife can't...
And then I got to the stage where I couldn't get up without help, and my wife would sort of take hold of me and rock backwards. She wasn't having to lift me, which was just as well, because it's never easy to lift somebody, bad for your back. She was just rocking me and I was able to resist with my feet. And that kept going until a year ago I suppose. I was still able to get up but it was getting harder and harder. And gradually my knees were going, so I couldn't lock out my legs. So she couldn't lift me backwards. And I think that probably ended around about December 2005. And by this time I was having trouble walking too. Yes, right through 2004 I was okay walking.
I fell occasionally, usually through loss of balance, but that wasn't necessarily my legs going. That was possibly because my arms had gone. I remember stumbling halfway up Vesuvius, and that was because my legs slipped away from me on the clinker. Now, normally you just throw your arms out and balance. But being unable to throw my arms out meant that I slipped over. And getting up off the ground was by that time difficult. I think people rushed, they knew I had MND and so they helped me up and I didn't really think about it. Probably some time in 2004 I was unable to get up off the ground on my own.
I had one rather horrendous time in Sicily. We'd been thoroughly enjoying ourselves, and we broke away from the party, they'd all gone home. And we decided to go to the Lipari Islands and have a look round, partly to see the volcano of Stromboli and partly just to enjoy ourselves and go round. We did a mule track, and that was about 4 kilometres downhill, no relief, nowhere to rest, no stones to sit on, no walls to lean against, nothing. And right down at the bottom, my right foot went away from under me and my knee couldn't hold me. I slipped and fell over and took large lumps out of my leg and knee. I think it took me half an hour before I could get up. I had to sort of turn over and kneel on that knee and then rock backwards with my wife helping. It took me about half an hour to get any strength back into my leg. It was really annoying because I finished the walk, which was no more than 100 metres down to the road, by which time there was a wall that I could sit on to rest, and I did, then we walked another couple of miles back. But it was just the continuous downhill making the knees go.
And I've fallen four or five times since then - four times anyway fairly spectacularly. Once I tried to come through the front door, and I was stupid again. I knew that I shouldn't go with my right leg forward. But I went over the lintel and of course my right knee collapsed and I fell, which was kind of embarrassing because I was half in the door, in the house, and half out of the house. By this time we'd been given a hoist, an NHS hoist, which was a steel hoist, which unfortunately was upstairs. And although it took to bits, I think it took my wife about half an hour to get it downstairs, because it was so heavy, and then to reassemble it. It was most awkward because I wasn't in on the floor properly. I was sort of half in the door, so there was nowhere really to put the hoist which was outside. And interestingly a number of neighbours went past and they all looked, they must have been curious. But nobody stopped or said, “How are you?” or - very odd. I don’t know what they thought I was doing. Never mind. Anyway this hoist was okay, but it was so heavy that we decided to replace it with something much lighter and a year ago we went to one of the disabled exhibitions.
We bought a Molift hoist, which is a Norwegian hoist. We’d had it recommended to us by somebody who doesn’t have MND but has MS. And it was a really good recommendation. You have to buy it and it’s not cheap, but it’s a lightweight aluminum hoist as opposed to the steel one, which my wife can lift. It’s shorter, smaller, we’ve taken it on holiday. It travels everywhere with us. We don’t travel light. But it’s really wonderful. I know there must be other sorts of hoist like that, but we’ve not seen them as good. It seems to suit me, it seems to suit my wife, because she can work it.
Wheelchair access and disabled parking seem easier in France. People are more firmly discouraged...
In [town] there are three beside one of the banks and they're always full of people, once even with a bank manager, who should have known better, who had gone back to pick up something. The French even have some rather disturbing notices. They say, 'If you take my space, please take my disability', which is a kind of crude way of making the point. The reason why we need disabled spaces usually because is that I need a longer space. Because I come out of the back of the car, down the cattle ramp, I need to have about 2' to 3 metres behind the car for me to unload. Well, the ramp is about 5 feet and then I have to have the length of the wheelchair as well. And some of the disabled spaces are good because they're longer. Some places are terrible. You find yourselves unloading into the main road into disabled spaces where you back out into the main traffic, which is frightening.