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“MS is part of me but it’s not my life. My life is much bigger and more fun than that”

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When Andrew was diagnosed with MS at just 22, he was determined the condition wouldn’t rule his life. Over 30 years later, he continues to live each day with the same positive attitude. This is his story.

First MS symptoms

The first symptom I noticed was numbness in my legs and my feet, which slowly came up and up the legs all the way to my waist, and with it came weakness in my limbs. I could still walk but I wasn’t strong, and I got quite tired quite quickly. Then the hands went a bit numb as well and that made for some interesting experiences with cigarettes and pints of beer! My hand would turn or I'd drop the cigarette, or it would burn all the way down - and I didn't even know. But the strangest thing was with the glass; there was a time when my wrist would turn, so I would be pouring beer gently out of the glass over somebody's foot and I had no idea what my hand was doing. I just didn't have that sensation at all. I knew I was holding something if I could see my knuckles were a bit white, but I couldn't feel it in my hand, so quite often I would hold it with two hands, which looked a bit strange!

Using a wheelchair

The way they (doctors) put it to me was: ‘It's not your friend and we're not saying you should get into it forever, what we're saying is when you need to get from A to B and it's a long way, don't be manly and try and walk it. Take the wheelchair, get there in five minutes, have loads of energy and walk when you're there’.  And that seemed a supremely sensible way of looking at wheelchairs.

But things continued to progress for me, and 20 years later I have to use a wheelchair because I can't walk. But it’s not so bad, you get used to looking at everyone just above waist height, which is interesting in itself because it certainly gives you a different perspective on life, and the way people look at you as well, that's very interesting. From a practical point of view it's fine; it's comfy, I can push myself around and I've now had two chairs where we've done an awful lot of miles and probably gone to some places we shouldn't have gone. I've even taken them swimming by mistake - one feel off the pontoon while I was sailing. I came back and thought: 'Where's my chair? Oh, there it is, it's only about five metres down!'

Yes it's different, but that's all really, and it's not that different. Therein lies, I think, part of the trick, it's a question of perspective. If you can get the perspective right about having a condition like this, then it's easy.

Taking life one day at a time

At the time I moved to my current flat, my hands and arms were very, very bad and it was difficult to push myself around in a chair; difficult to do my own transfers from wheelchair to bed, and I felt pretty incapacitated. But very fortunately, and I don't know why and nor does my consultant - perhaps it's a mixture of the cocktail of drugs I've had over the time I've had the disease, maybe it's a bit of good fortune as well,  or maybe it's something else  - but it has changed in the sense that the movement and dexterity that I wanted to try and achieve in my hands and arms to make me a bit more independent and handier in the chair has come back, although not without a great deal of neurophysio input. My eyesight is the one thing that's got worse and the legs are much the same, my trunk stability has improved a little bit, but really if you've got some hands and good strong arms it changes a lot of things. I'm happy to say that things did work out, whether or not they stay like that, who knows? But I can't go on living a life where you think what's going to happen next week, next month, next year, you just have to enjoy the moment and while things are good, make hay.

Parenting with MS

If they want to talk about it, they will, if they want to ask you questions, they will. Kids are like that. I think it's possibly quite daunting for a child to sit down with a parent and get this long story about this dreadful thing that's happened to mummy and daddy. I think it's much better to leave it to that child's natural curiosity. They'll ask what they want to know, what they don't want to know, they won't ask you.

It's not a big thing for me; I've never made a big drama about it, it's just what I have, that's all. Yes it's part of me but it's not my life, my life is much, much bigger and more fun than that. The way I positioned it to them whenever it did come up, usually over things like 'Dad, can you come and bowl in cricket?', is ‘Don't be silly, of course dad can't do that, but I can umpire'. Football, or whatever sport it was, I might not be able to play but you just have to find your own way of participating.

I told the boys that it was going to be different but not that different. If you think ‘Oh my god, this is all disastrous, everything has to change’, it probably will. But if you can say ‘Yes things have to be different, but only a little bit different’, then I think you've got it into the right area. You’ve put it into perspective, and that's a good place to be. For example, if I go to a test match with the boys, because we love watching cricket, there are only two places I can sit, either in the Mound Stand at Lords or the first floor of the Grand Stand. Ok, I can't go and join a mate in the corporate box, but it doesn't matter. I'm still there, we're still watching the game, still loving it. Ok there are some things you can't do, but you can sort of do them, that doesn't mean to say the enjoyment is any less. It's still definitely worth doing.

Advice for other people with MS

It helps a lot if you can keep an open mind, keep versatile and keep adapting. ‘If I can't do that, what about doing it this way?’ Instead of thinking that door has closed on me, that's it and forget the idea.  No, don’t forget the idea, just keep mulling over the idea of another way through the door or another way around the problem. There’s usually a way.

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