Joost was diagnosed with Motor Neurone Disease in 2010, and given two to five years to live. He is committed to fighting the disease, and determined to enjoy the time he has left. He sat down with Jacquie Beltrao of Sky News for a chat.
You can view the video HERE
Here is a transcript of the interview:
How are you and where are you with this disease?
Well, I’m always well, very positive and trying to fight it.
You’re going out there to raise awareness of this disease?
Ja, we’re going worldwide. An MND person tends to go into hiding. There’s no reason for it. You are still alive. Live your life and have fun.
Because your brain is still completely active…
One hundred percent
Just your voice isn’t as good…
Ja.
Has it been hard, harder to deal with this disease because you were such a fantastic sportsman, a real legend of the game of rugby and always in control of your body because of that, and now your body’s letting you down a bit?
It’s been very hard, but you adapt. You can either stay at home and deteriorate or you can adapt, live your life and create memories.
So you’re very positive…
I am.
…I can tell that – getting a real kind of positive vibe from you. How do people around you cope with it, how do your children deal with this, or your parents?
Ja, my parents are taking it hard, but then it’s quite simple, if they’re going to be emotional then we’re not going to have fun times together that we have left. And if I’m going to be emotional the same thing. So I spoke to everyone and told them “Accept it. Let’s have fun”.
You’ve just accepted this illness?
I have to.
Such a legend of rugby, I’m just so pleased to have met you. Do you ever sort of sit there and think “Why has this happened to me?”
No, I did in the beginning. The answer is quite simple: “Why not me?â€. I mean if I have to go through this to help future generations, why not? And for us it’s about the quality of life and we focus on that.
And I think you’re inspirational for other people who have this disease sitting at home and thinking “Don’t give up”
No, never, never.
Find out more on Joost’s website at www.joost.co.za