James - Interview 16

Age at interview: 76

Age at diagnosis: 61

Brief Outline: James was diagnosed with Primary Lateral Sclerosis (PLS) 15 years ago (1991). His wife also had MND and died 3 years ago, 2 years after her diagnosis.

Background: James is a retired carpenter/joiner, widowed. Ethnic background/nationality' White British.

More about me...

James first noticed something was wrong with his legs when out playing golf in the 1980s. His GP referred him to a neurologist, who asked him to come back in 6 months. He also saw a neurosurgeon, but it was clear his symptoms were getting worse. Eventually he had to give up work. 

His wife spoke to a new GP at their practice, who referred him again, and this time after considerable tests the primary lateral sclerosis form of MND was diagnosed (in 1991). He already knew something about the condition, as he had a friend with it. He has been on Riluzole ever since, and has three-monthly appointments. His symptoms have progressed slowly, and he is still able to drive and to walk using a stick or a frame. He has a wheelchair and a scooter, but is determined to keep walking as long as possible. His upper body is still quite strong and he goes to the gym regularly. 

However, about 5 years ago his wife kept turning her ankle when walking. Her diabetes consultant referred her to orthopaedics, who referred her back to her diabetes consultant. James asked his own neurologist about it, and he said to bring her along to his next appointment. Once she saw the neurologist, it was discovered that she too had motor neurone disease. Her condition worsened much more quickly than his, and she died within two years of diagnosis. Towards the end it became very difficult to care for her at home, and she was admitted to hospital, where she died quite suddenly.

As a result of this experience, James has seen at first hand how motor neurone disease can affect people. He tries not to dwell too much on the future, and tries to live each day as it comes. He enjoys being taking part in the local MND Association branch, and gets involved in fund-raising and social events. It is very important to him to remain as active and independent as he can.

He believes people should have a right to make their own end-of-life decisions.

He can't understand why both he and his wife developed MND. He thought playing a lot of sport might have had something to do with it in his case.

Have you ever thought yourself about the causes?

I've thought a lot about the causes and I'm no further forward. I have no idea. As far as I'm aware there's no history of this in my mother's or my father's side, or in my wife's family either, and, and she had two brothers, so why should she have it and the two brothers not? I had one brother and I've got lots of cousins. My mother came from a family of ten and my father came from a family of seven and there's none of this, none of my cousins or relations have been affected, nor was my brother so why me? I don't know. I mean I've done all the sort of things that young men sort of, you know, played lots of sports, ridden motorbikes perhaps more quickly than was sensible and driven cars perhaps more quickly but it's nothing that I can lay my finger on obviously. Being a goalkeeper you've got lots of knocks and bumps and this sort of thing but that's a long time ago, so I haven't got a clue.
 

He is battling to get disabled parking spaces closer to public buildings but the council says...

I have a wheelchair which I use when necessary but I'm trying hard not to use a wheelchair. I want to walk as long as I can. The only real problem I have is with the Local Authority, they seem to be able to place the disabled bays in the most useless places and I'm fighting a battle with the Local Authority at the moment because the disabled bays are so far from the entrance door to the, to the sports centre that it's, it's ridiculous in my opinion. And there's an area at the side which could be quite easily made into disabled bays and they just don't seem to see the necessity and I say they look at me with, with a bland expression and they say it's within government guidelines. I haven't seen these guidelines. To me there's only one guideline and that is to have the disabled bay as near the entrance as possible. But they just don't seem to have any idea of who they consult about the positioning of them, don't seem to know where they should be.

And, and to me that's the, we have a situation where I go where the local library and the, the staff car park is all nearer the entrance than the disabled bays and I think this is absolutely horrendous and shows a, a complete lack of understanding. But with the aid of a good friend I'm, I'm fighting the problem and I will continue to do so as long as I can. Not for me alone, but there's other people who go with me who are disabled and they have the same problem and they don't seem to take into account your pride and the fact that you want to be independent. We don't want to be pushed along in a wheelchair. That will come quick enough and I think that a, a good deal more could be done certainly by our Local Authority, the Borough Council.

I mean in my estimation there's an area of land, which is nearer the, the, the entrance door, which could put at least six disabled bays on there and they'd be all nearer the entrance than the existing ones, and usually when I go to use one of these disabled bays, often there's a mother and child parked in there and they're not very co-operative.

Is there anything else about getting around that you've noticed is harder?

It's just the sheer effort that's required in, in my case I can only speak for myself and it, it would probably be easier for me if I went in a wheelchair but I'm determined to walk as long as I can. What I was fortunate enough to do I won an electric scooter and I sometimes use that to go down the street and it makes such a difference to be able to move and talk, you talk to people. If you're in the car you tend to be isolated and you can't often get parked where you need to be parked within striking distance of where you want to be, but the electric scooter makes a big difference.

He was proud never to have had a day's unemployment. Realising he was not going to work again was...

But I, I just thought that the harder I worked, the harder I would get back to work because I'd never, I'd never had a day's, I had been off sick you know, not frequently but occasionally with flu or something but I'd never had a day's unemployment. I had been employed from the age of fifteen to fifty-four and never had been out of work. Never had a, one day unemployed which I was very proud of and, and I wanted to get back to work as soon as possible. We'd always been independent and it took a long time to come to terms with the idea that you, that you'd gone from being the strongest man on the squad to the weakest, and that's very humiliating.

How do you come to terms with something like that? I'm sure that's something that a lot of people have to struggle with.

Well I suppose it, it you have to adjust whether, whether you have difficulty adjusting, or it's easy to adjust, some people are different. I found it very difficult because I'd always been very fit and very strong and without pinning medals on myself with the, with a dirty job to do, I took hold of it first. I think that if you want to lead people as I had done, you had to lead from the front rather than push someone else into the dirty end and then to suddenly find that people were having to do things for you is, is very hard to, to come to terms with. But you have to or you'll drive yourself silly. When my garden's untidy for instance I can walk past and avert my eyes. I know I cannot do it and I have a, obviously a gardener who comes and does it and, and does very well, but when you want to do a thing yourself and you cannot, that is very hard to, to live with. Especially when you've been used with having strength to spare, but you have to come to terms with it, the other way lies madness. And you can make your life and everybody else's life a misery if you have a mind and you just have to grin and bear it you know? Or try, we have our down days but for the most part we, we just carry on as well as we can. I want to be independent, my family have their lives to lead but as I say without my sister-in-law and my brother-in-law, I'd be stuck.

It was difficult to get advice about benefits. He was assessed for Disability Living Allowance by...

I did have a little trouble at the start. Again, I felt that there was no-one to really advise you. I mean, I went for quite a long time not getting any money for my wife until this girl rang up one day. And this was after several weeks - well, months, really - and I mean it did make quite a difference getting the extra money. But as far as I know I'm getting everything I'm entitled to now.

But it was waiting for somebody to tell you?

Yes, and there was no-one sort to come along and say, 'Well, this is what you're entitled to.' Really you have to depend on the Citizens Advice rather than some sort of troubleshooter come to see you and say, 'Well, yes, I can see what you're like and you should getting this and you could get that, and this is what you're allowed'. It took a long time.

I had to go to another GP who didn't know anything about me, who was a retired GP, and he had the say-so whether I got disability living allowance or not, which I thought was ridiculous' They had all these people to refer to, and yet I was sent to see this retired GP, who had never seen me between the eyes before, and that was the consultation, which took about thirty minutes. And I thought there was any amount of any information about me without having to do that. Fortunately he was a very understanding man, and he said, 'As far as I can see you're minimising your problems.' He said, 'You must understand that I deal with a lot of people who are maximising their problems'. And he told me there and then that he would - he said, 'I shouldn't tell you this but I'm going to put down that you should have your disability living allowance.,' which I thought was very nice, but at the same time I didn't think it was necessary. There was any amount of information available but I suppose if that's the way the system works.

He's had a good life and he'd like his doctors to be able to help him end it quickly when the...

I mean I've had a good life and although I've had some bad things have happened like my parents dying and that sort of thing but for the most part I've had a very happy life and I'm grateful for it. And the man said three score years and ten and I've had six years bonus. So all we can all ask for is an easy get out at the end of the day. I would very much like if I was sensible enough if I could say to my doctor or consultant, 'Switch me off' and he was able to do it because you wouldn't let a dog live the way some people do and when you hear these people say it's not ethical and one thing and another, usually they haven't got MND and I think that that should be everybody's basic right to say, 'I've had enough'. I'm, I'm very strong on that. Everybody wouldn't agree but I think if those who desire that then it should be available.