Patient Advice

Topic 1: Newly diagnosed

Usefulness of not knowing the progression of the condition

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Will: Everyone finds out about the diagnosis in a different way, and often by accident. For me it took quite a while to learn exactly what the issue was. Initially when I had problems – like not being able to swim as well during swimming lessons – it was put down as attention seeking. It took having a GP who had seen it before, to recognise the symptoms a number of years later. I think one of the biggest difficulties is how to deal with telling someone of that age (10) what they have been diagnosed with, and its implications. For me, it was useful that my parents decided not to tell me how bad they thought it was going to be. I think had I known the (expected) outcome, it could have been quite difficult to deal with and would have limited my expectations of what I could achieve in life. In the end, my symptoms weren’t as severe as they were expecting, so adjusting to it was a more gradual process.

Accepting your new reality

Tatum: The sooner you accept your reality – and what you are going through – the sooner you can be yourself. And you have to do that. Don’t pretend to be something you are not. You are not just your disability – your disability doesn’t define you, but it is part of your life every single day. It’s just a journey to work through. The sooner you can recognise ‘this is what it is’, and communicate that with others, the more fulfilling life is going to be.

Things are possible

Andrew: Back at the beginning, I thought my life would be over. I thought: this is not going to be possible. But it is possible. I’ve got a good job, travel a lot, go on holidays, etc., and I feel I am very lucky and fortunate with what I do have. I think you have got to look at things differently, and you have got to stop being defeatist – thinking that you can’t do things. But, just as important, you should do the right research because you don’t want to go out there and fall over on the street.

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