Well I think everybody is individual and it takes you differently. All I know is that when you start to feel suicidal you’ve gone down so low that its very hard to try and climb back up and I think if anybody does start to feel exactly like that then they really must go to a doctor and get help;

I don’t think medication is the be all and end all to help you with depression; it is talking to people who understand what you’re going through and I think groups… people can help you on that. Especially people perhaps who’ve gone through similar and come back up and out you know. I’ve not always been positive;

Even now I still have my down days but I I’ve now learnt that they are my down days and sometimes I’m very depressed but again, just like my physical illness, I just go with it. I don’t worry about it. I don’t worry anymore because having the treatment I had when I had my breakdown I keep going back to that and OK I could be down I think to myself ‘you’ve got to do something, you really have to go do something because it’s like a circle;

If you go down you could stay down and if you don’t do anything you go wrong. You’ve got to try and break that circle and if somebody says, ‘Why don’t you go out for a walk; and you often turn round and say, ‘ I don’t want to go’ , or, ‘I cant be bothered. that’s when you’ve got to talk to yourself very hard and say ‘ok’, because if you can keep your mind active enough to do something, even just go and sit in the garden or..

I’m not saying at that point you feel like doing any reading or anything but just giving yourself a little bit of exercise just to go out even in a wheelchair to go out to feel the breeze on your face and see the sun, when we get it, weve had a lot of that just lately! But even the rain, go out and just look at shops. Something might just click in you to make you feel just that little bit better. You certainly will be better than staying in and not doing anything.

Wife If people offer to do errands for you when you’re busy you know running backwards and forwards to hospital or just early days when caring takes more of your day, say yes rather than no.

Do you think some people are just reluctant to ask for help then when its offered?

Patient’ Yes.

Wife In my case it’s a… I’ve always coped and ‘oh no I don’t need help’ but when you stop and think about it, that help makes a lot of difference. Because you’

You’re really at the point where it’s like people are willing aren’t they?

Wife Yeah.

And you’ve got to pick up on their willingness.

Wife You’ve not got to be afraid to say, ‘Yes please and take it. You know just a little help makes so much difference.

And often people want to help don’t they?

Wife Yes. And if you push them away they might not come, they might not offer again or they might be reluctant to come just to visit because they think you’ve put a shell around yourselves.

Yeah, you’ve kind of rebuffed them?

Patient’ Yes;

Yeah. So what other advice would you give them?

Make a will.

Make a will, yeah;

Tidy up all your matters. I’ve tidied up 90% of my stuff. I’ve got just 10% to go.

You’ve done 90% of it?

I’ve only got one last thing. I had the will before and I’ve put everything in order. I’ve started clearing out my clothes and so I’ll get rid of them to a mate of mine. Sort through my gear but most of that’s done. I’ve ear-marked things I want people to have, whatever, some daft things.

Did you say you’d done some daft things?

Yes, I want some little daft things, what I want people to have.

What you want?

Certain things I want certain people to have because everybody wants to be more than a speck of sand, don’t they?

I agree, yes.

What other sorts of decisions would you say people need to be thinking of when they reach this point in their lives?

Well, if they haven’t already done it, there are things like wills and taxes, putting their papers into tidy order which I continually try to do and never get to the end of. But above all, don’t worry. It does no good, and someone else will do anything important. Don’t throw everything away too soon. Photos, letters, postcards, all bring back happy memories. Puzzles, board games, playing cards, help pass the time. Writing reminiscences of early years with lots of detail, provides fascinating reading for younger people.

It’s a big job, isn’t it?

Yes. What else? I think getting ones address list in order, that kind of thing, because people, family will have to find… to get hold of, you know. Much easier for me to do it than for them. Any preparations one can make that will make life easier for them and the more complicated your will, the more important it is.

So have you had to ask people for help with that or have you done most of that on your own?

Anything that’s been done, I’ve done on my own. But it hasn’t all been done yet.

Theres still more to do, is there?

Lots more to do, I think.

Yes. Assess your own lives. Assess your life and what has been. Oh, the meaning of life I mean but not in, the meaning of your life. What is it your life has been and its all the positive things. All the times that you’ve enjoyed;

Life is a mixture of all sorts of things. There are sad moments and there are moments when things have gone wrong and there are things when you can be upset and angry about things, but find the positives. And rejoice in those positives and rejoice in the life that you’ve had. Celebrate the life that you’ve had and come to terms with the fact that it will ultimately end. The only difference is that you now know and some people… well it comes to an end and they don’t know about it. And I don’t know which is worse;

If you had a person in front of me now and if they had characteristics I am portraying now, the characteristics of MSA [Multiple system atrophy] – they are quite general, like movement, speech, etc. etc. – I would sit that person down, if he had just been diagnosed, and I’d tell him exactly what was going on so he can make decisions because you cannot postpone anything. If he said he wanted to walk up to the top of Mount Kilamanjaro, that’s the time to do it. You don’t get a second chance at it;

People have got to do whatever they want to do now and not listen to anybody and just go out and do it. Do their most heartfelt desires because, once this thing starts biting, you can do very little and it’s very, very, very frustrating. Don’t take ‘no’ or ‘later’ as the answers’ because that’s what I’ve done.

You mean you did take ‘no’ or ‘later’ as an answer?

Yes. I put off something last year. It was something I should have done. Now I thought I could do it this summer but I can’t;
I may be able to do it, may be but I wanted to do it on my own and now I realise how weak I am. If I fall down on the floor, sometimes, depending on how I fall, I can’t move. If it happens to me in the wrong place, at the wrong time, I’m in big trouble.