Shyam - Interview 35

Age at interview: 80

Age at diagnosis: 80

Brief Outline: Shyam was diagnosed with MND about six months ago (2006). He has difficulty walking and uses a wheelchair. His speech is slowing down and his voice is changing.

Background: Shyam is a graphic designer/book illustrator, married with 1 adult daughter. Ethnic background/nationality' Indian British.

More about me...

Shyam noticed that he was walking strangely after returning from a trip to India last year (2006). His feet felt weak and he had a couple of falls. His GP referred him to a neurologist, who quite quickly diagnosed motor neurone disease.

Shyam did not know anything about the condition, and would prefer not to find out much detail about it. He did not feel very upset about the diagnosis, and feels it is better for professionals to give people positive messages and encouragement, rather than emphasising the negative side. His philosophy is to accept the condition like a guest in his body' he must treat it with respect, as he would treat a guest in his home, but the illness must also behave well, and then they can get along together.

The most difficult thing to cope with practically has been falls, and needing help to get up again. Otherwise he feels peaceful and calm, and does not want to think about the condition from day to day. The only thing that saddens him is feeling he is a burden on his wife, and he thinks it would be helpful for her to meet other carers. He too is curious to hear about the experiences of other people with the condition, especially if their symptoms also started in the legs. The only support group meeting they have been to so far did not give them much opportunity to talk to others. 

Shyam has hydrotherapy once a week, which he enjoys. He has had some equipment provided at home, but had to pay himself for a stairlift. He uses a wheelchair on one floor of the house and needs another on the other floor where the bathroom is, so that he can get to the bathroom quickly enough from the stairlift. He thinks patients need to be given more choice and information about what equipment is available and what they would like. His message to other people is to live each day as it comes and not worry about the future. 

A course of physiotherapy helped, but now he often forgets to keep doing the exercise. He likes...

I went to the physiotherapy. They're such nice people. Did a bit of exercise. But you only go for six, six weeks or something like that, and then end. And moreover when you come home, you forget to do those things also. But when you are with the people, when you are regulated, you do those things and feel a bit better. I'm going to the hydrotherapy now. There I do the exercise. And I found when I'm dipped in the water it's like a wall all around you. So it's very easy to do, bouncing around there. And it's so nice. But how long is it going to go? You don't go long. It don't last.

How often do you go?

Once a week, once, on Thursday I go.

He says he has never felt worried or upset by the diagnosis. What saddens him is feeling that he...

I live with the day, every day the same way. I'm not worried about it. That has to look after me. I have to look after it. It's there anyhow. So this is the way I spend my time. I'm not worried about what will happen next, how far it will go, how far it will not go. It can get out as well, by itself. Who knows? And this is the way I live every day.

Was there ever a time, perhaps straight after diagnosis, when you felt more depressed about it'

Not at all.

'or shocked?

Not at all. The only depression for me is I'm dependent on other people. Now, my wife is next to me. I have to ask her because I'm helpless. I have to ask her for every little thing. And that depresses, that gives me a pain, in the sense that I'm taking her time, which she could be spending her time with some, something else, in her own pursuit. And same thing when other people have to ask, they do something for me, being because they find that they should help me, they feel. And so, but I'm the one culprit in the sense that I'm taking their time. That's the only thing which hurts me. Otherwise, fine, because whatever will be, will be. But involving other people as carers, as that's the great word 'carers', I'm afraid they are carers. My wife is a carer. She has no idea at all how to, how to deal with my problems. Now with the frustration, it does happen. With the frustration sometimes I get angry. I mean, it's not a question of being angry, it's just sometimes you roll, sometimes life gets heightened up and you speak a bit loudly. And people think that I am angry about things, which is not really. Why should I be angry? But it's the frustration as such that the pain is here that I cannot do by my own spirit. And that is the worst thing which she, she has to tackle with. She has, the carer has to think, 'Oh, my God, he's angry', that she has done something wrong or something - how she should behave, how she should tackle the problem? And so I thought I'd better send my wife, because there are so many people in my condition. The carers and the people who are caring about, they must be feeling the same thing, they must be going through. How do they tackle this problem, behaviour of tackling, looking after the condition of the patient? So I was thinking that she should meet another carer who is in the same situation, how that person is tackling the problem, the behaviour of the patient as such. I haven't yet found to send her, and I would very much would like her to go and meet people.

He once got stranded in the bath after he let the water out. Now he has a shower seat.

I have got, they have brought me the shower seat there, which I can dip in and come up. I've been told, once I did and - no, I tried to improvise my own actually. I filled the bath. I went in happily - at that time I was a bit better - happily, and had a good bath. And then I let the water out. Then I was trying to get out of the bath. I couldn't, I couldn't raise myself. I was so stupid that, in the water would have been better, I would have been bounced up [laughs]. And I was struggling for half an hour. My wife was upstairs. She couldn't hear me at all. And I was struggling. My hand, and they were all, my both the hands were slippery because of the wetness, and as the bathtub is so shiny. Oh, I was exhausted. It took a long time.

You got out by yourself in the end?

I got out. And I was so, I couldn't, I just slept on the floor even. But I rested. The only - then I learnt myself - the only thing to do, which can help you is a rest. It doesn't matter, and not panic. If I have fallen down, stay there, recover, get your strength, and then do. This I understood, and I applied. But I, it, it is there, and then I apply.

He does not want any information about MND and what other people feel. He wants to experience it...

The, something I was going to ask you arising from that is, is about the information. Because you, it sounded like you weren't given any information?

Nothing at all.

Nothing, not even a leaflet?

Nothing, nothing at all, nothing, nothing at all. And I didn't ask any questions because I didn't know anything about what it was and all that. And even my doctor didn't know anything about it either. And, I just was not interested to know. Because it, I've heard a lot of people have cancers and things they are going through and all that. But I was only thinking in terms that I want to experience, have the experience of going through. I want to, it's like I want to, writing a book of my experiences every day. I didn't want to know. Later on a letter arrived and a lady arrived and, who is in charge of this Association.

The Motor Neurone Disease Association?

That's right. And she arrived and she took down the details and et cetera et cetera. And then later on I've been sent all the details about what the Association is about and this and that, and all that. And then a magazine arrived. There are pictures and all that. And there, I mean, everything was so happy and all that, it said so. But it didn't interest me, because I wanted to have my own experience as such, because other people's experiences have nothing to do with me. That's what I thought. And still I live with this same thing, same adamant sort of strong-headed thing. And then a volunteer person who comes over here to me, see me, fortnightly, he comes. And it's nice of him to sacrifice his time, and coming just for my benefit, to come and be with me, sort of thing. But I did not wanted the interference, that somebody should come and tell me what it is about and all the details and things, I'm not interested in at all. Because it's my own discovery, I want to discover myself what the pain is. Good, the only good point is that I don't have pain. That's the best part I think, that's a great thing. I do have sciatica pain in my left foot. And so I thought it was, it, it was the weakest point. It was not. It's the other one which is [laughs]. Anyhow, but another thing which I found, which I think everyone, I would advise to other people, they must never go and tell, show the worst side of it. Whatever they may say, they always use positive words, encouraging words. 'Oh, you'll be all right tomorrow. It will be better tomorrow. Something will - you should look forward' and that sort of thing, rather than hearing a day of, day of doom or something. No. That doesn't, that doesn't help at all.

Drawing on Hinduism and Buddhism, he accepts MND as a guest in his body. They have to live...

And then later on I started thinking about it, what it is which has come to me. 'Why did it happen to me? What have I done?' And this is a discovery as such. I went right through, I mean you can always say, 'Well, you did something in your last incarnation, karmic and all that.' Which no one knows. 'Where did it start? What did I do? What was the deficiency in my food?' I couldn't say anything, nothing. And did - now, then another thought came that, 'This thing has arrived in my body, something from outside.' I took it in a sense that, we always say something which arrives at home, I take it - the body is a home. Just like this home where I live. I came from outside. This house has given me an abode, in a sense. The same way that disease comes in my body, which is entering in the house of my own. Now we always say, 'Whatever enters is a guest, and I am the host.' Now, there's a relationship between the host and the guest. When a host arrives, we have to accept and welcome. Now it's up to the guest to see the same thing. If the guest wants to be accepted happily, then he has to behave well as well. So I thought in that sense I can't do anything with that, what has entered to me. As a guest, I take it. But if we both have to live together happily, we have to behave happily both together.

I feel if I panic about it I'm actually stopping, I'm creating a aggravation between that, and it can happen it may harm me. I don't want to make the guest angry about the thing, that it could do drastic, you know, sort of things. So we want to live together in peace really. That's my philosophy.

Where does that philosophy come from? Is it you personally? Is it a religious position, or?

Well, I have, I mean - well, of course I have, I have heard from Buddhism also. You see in the end the balance, the peacefulness is more important, that - the middle way, it's the middle way. And that middle way is that we both are together happy. There is a, a story behind this, a Chinese story about the bull and the little boy. How you tame, this little boy had to tame the bull. The bull is the more stronger. The disease is more stronger, which I know nothing about. And how to live with a stronger person, which is just one of those things. And it's like, there's so many steps about this, how to deal with a stronger personality, rather than going and bashing also. That doesn't help. So there are ways of tackling it. And the story - I'm not, it's vaguely I know about this story, the tackling the bull, and the, both of them live happily. The boy sits on the, on this ox and he's playing the flute, and the ox is going away. It's so beautiful this story. And I believe in that, that - I mean this disease, I know nothing about. The, how strong, how bad it is doesn't matter to me. Whatever the nature of the disease is, is the nature of the disease. That disease also cannot do anything. That's the nature of it. A snake, we always are afraid of the thing, of the snake. It's our own fear. But the snake will only do what that nature of the snake is. So why should we worry about? This is the way I look at the disease.

He fell halfway up the stairs. He crawled to his alarm call buzzer to get help. Now he has a stair lift. Ideally he needs one wheelchair upstairs and one downstairs.

Here also I, two or three times I have fallen down. And the strength - once I was having a rest downstairs and I fell asleep. And I took my telephone also down. And I came back. Suddenly I realised, “The telephone is downstairs. I'd better go back because somebody might ring me.” I went back again, and I started coming back again, the same continuity. When I went halfway and my hand, this chair was not there, electric chair.

The stairlift?

The stairlift, the right word. The stairlift was not there, and I was trying to come up. And I was so tired. Halfway I just wanted to - the question came, “Should I leave my hands and go down tumbling, or should I hang on?” And then I stopped thinking completely, waited about ten minutes or something, then I pulled myself up and then I collapsed here. And I didn't have this buzzer. The buzzer was here. And from there to walk, I mean to crawl, even the hands are getting weaker. And it reminded me of these alligators - well, alligators have got four legs [laughs]. But the snake even, they don't have any legs, how do they wriggle and reach the places? It's, all these things are reminding me of these things. Anyhow, it took me a long time to come and reach that. And, then I thought, “Should I ring, or should I not ring? Should I wait?” Because I was so exhausted. “I'll just press the thing.” And then they ask me, “What do you want?” And I told them, “I need help.” Then they rang back to my neighbours and they came. Even they could not lift me, because I mean they're not that strong either [laughs]. So, but anyhow I tried, wriggled up, and stood, sit there. It takes a very, it's difficult to place myself from here to there, sort of thing. That is the, that thing that I have to go through and it's my most weak point. Otherwise, okay, it's a lovely day.

So you've got a, an alarm call?

Yes, I have, which is downstairs I think somewhere.

And you've got a, a stairlift?

Yes, I have got a stairlift.

Zimmer frame. Obviously a wheelchair.

Yes.

Are there any other bits of equipment or adaptations you've had round the house that have been helpful or not helpful?

No. Well, I've been told, well, not yet, because I can go around with this [wheelchair]. This is very helpful. Downstairs I've got only a Zimmer frame, from there to go to, I have to go to the toilet, rushing, running. And it's a very helpless thing. And I heard that I could get another chair like this. I need another chair like this, that I could move about easily. That's my necessity, which has not happened yet.