||02 September 2012 07:00
|Show: ||Carte Blanche|
Clumsy fingers, slurred speech and a weak grip - the seemingly benign symptoms of a fatal disease.
Joost van der Westerhuizen: "This [pills] is my breakfast every morning..."
Motor neurone disease is a catastrophic degenerative condition - incurable and indiscriminate.
Joost: "Last batch."
In April last year, rugby legend Joost van Der Westhuizen was diagnosed with amyotrophic lateral sclerosis - an aggressive strain of MND that attacks the central nervous system causing progressive disability and death.
In the hope of stopping the onslaught on his body, Joost starts every day with a concoction of medicines, vitamins and special tonics.
Joost: "Ja, this one is a syrup and it helps for my voice. So I do this [drink it] in the morning and before I go to bed. It is supposed to be 6.7mm, but it is a bit tough now to do the syringe, but by now I know how much, so I just gooi [drink]."
Still upbeat, the much-celebrated Springbok has invited us into his life
Derek Watts (Carte Blanche presenter): "Just... every morning, Joost, do you ever just pull the duvet over your head?"
Joost: "I used to. There was a stage in the beginning when I just withdrew. And I actually had to make a decision: I'm going to sit here and die; or you're going to live your life, enjoy it while you can. And when I come out, I wake up with a smile. I'm still alive, I'm not dead."
Living alone, Joost jokes about the challenges of daily life.
Joost: "The funny part. You get the powder in the cup. See (laughs)."
The once super-athlete has learnt to accept his limitations.
Joost: "Clean up every morning."
When Joost first got the news, he didn't understand what an MND diagnosis meant.
Joost: "I just sat there and said, 'Okay, give me medication.' And he went, 'No... two to five years.'"
Derek: "As blunt as that?"
Joost: "Yes. They have to [be]."
Derek: "So who broke the news?"
Joost: "Dr Kelbrick. Luckily he is my best friend so we understand each other."
Derek: "It must be tough for him to tell you?"
Joost: "Ja, he was white."
Determined not to simply accept a death sentence, Joost has spend most of the past year searching for hope.
Joost: "I am doing research every week. That is how we got to drugs I'm using now."
Derek: "And it's this Mongolian goat weed... what is it?"
Joost: "Tasmanian goat serum. They said that it is one of the purest animals. So they make the serum from their blood."
The treatment is experimental and expensive.
Joost: "The sad thing is this is £200 [for] one and I take two a day."
Not able to inject himself, Joost keeps the vials frozen in foil until he gets to gym.
Joost: "And then we defrost them and then it must go in before it is warm. If it melts, you can throw it away."
And then it's the daily drive to the gym.
Joost: "I can't wait. Every morning, night..."
Derek: "What gives you your strength?"
Joost: "My kids. I need to get healthy for them."
In the middle of a highly publicised and protracted divorce, Joost says his time with his six-year-old daughter and eight-year-old son is limited.
Joost: "And hopefully I'll get to see my kids today. Ja, and I SMS... nothing yet. Phoned... no answer. So, again, we will see."
Holding on to what muscle strength he has, Joost follows a rigorous training schedule designed by biokineticists.
Joost: "Also, with MND, you get a thing called foot drop. It means you struggle to pick your toes. So now we also can compare between left and right what's the difference and if there's an improvement."
The exercise regime focuses on small movements to build strength in areas most people take for granted: feet, wrists and hands.
Derek: "What does this do?
Stephan Muller (Biokineticist): "It just works the muscles of the hand in the forearm."
Derek: "Have you worked with anybody like Joost before?"
Stephan: "Not with his particular line of neuromuscular disease, but basically a lot of stroke patients. But the principle remains the same."
Derek: "But not everybody has got the determination of Joost?"
Stephan: "Ja, definitely, he's positive. But there are days when you can see - he doesn't say it, but there are days that you can see he has to work to get here. But he is on his post and our part is actually the easy part."
The unusual part of this job is administering the goat serum. The experimental treatment is having positive results in patients with multiple sclerosis.
Joost: "And I'm the eighth person in the world with LS on this."
Derek: "So you really are part of this trial?"
Joost: "Ja, well, we have to. I've been told I'll be in a wheelchair in 12 months. Well, it is now 23."
Derek: "Writing your own story?"
Joost: "Something is working."
Joost: "It used to be every month you're feeling your body is going backwards. But lately it feels like it has stabilised and it gives me hope."
Derek: "What do you have as your main aims for the future?"
Joost: "My goal in life is to play ball with my kids one more time."
Derek: "As simple as that?"
Joost: "As simple as that. They give me hope; they give me energy, and I just want to play ball one more time."
Derek: "What do you hope for them in the long term? Do you see the way they're going in their lives?"
Joost: "I would love to, hey. No, sometimes it gets tough when you think you might not be able to take your daughter down the aisle or see your son play... It gets to you, hey..."
Joost says he is not allowed as much time with them as he'd like.
Joost: "If it was a normal divorce, I'd understand, but this is different. This is terminal and I need to spend time with them."
Derek: "You are not officially divorced yet, are you?"
Joost: "No. Up and down, forth and back... actually two years now."
Derek: "What do you see as your mistakes and what do you regret?"
Joost: "Ja, I mean obviously the last three years, a big mistake."
Derek: "The sex tape?"
Joost: "Ja... and, back then, I was in a dark place. You know, I've learnt... I know now how I should have handled it."
Derek: "Do you think you should have admitted it from the start?"
Joost: "Ja, of course, Derek. Back then you're scared you're going to lose everything and you grasp to a string in the air that might help you, instead of just man up. But I know it now."
For most of his life, Joost has only known fame. He says he needed to come off the pedestal.
Joost: "Ja, I must say I was a bit arrogant."
Derek: "You were?"
Joost: "Ja, I think so. But that's what my life of playing rugby made me. I'm not blaming rugby at all. It is question of everybody wants your autograph, your photo, your time... All your life people looked after you. You got away with everything."
Today Joost tries to avoid the limelight, surrounding himself with family and old friends.
Joost: "I had a lot of friends... but not a lot of real friends. I've learnt through my mistakes. I surround myself now with only positive people."
People like Dr Henry Kelbrick, who first realised Joost was seriously ill.
Dr Henry Kelbrick: "We were playing in the pool with the kids and, as typical rugby players, we were wrestling in the pool. And I could feel he was losing power. And that night he has slurred speech and I said, 'I thought you were just drunk, but we didn't have anything to drink.' And he said, 'Yes, he's got this problem for the last couple of months.' And then I sent him [to get checked up] and that was it."
Joost: "In a sense I'm glad I got MND, because it has shown me again the reality of life. Me and my family are so close now, and I'm actually a happy, happy person."
Gustav van der Westerhuizen (Father): "Very proud, really. He's a fighter; he doesn't go and lie down."
Derek: "How's it affecting you?"
Gustav: "Ag, you know, sometimes you sit at home and we think, 'Mustn't we go and stay there? Mustn't he come to us?' And he said when it is getting too bad he'll come [and] stay with us."
Derek: "Mariana, are you handling it?"
Mariana van der Westerhuizen (Mother): "Sometimes not, but I must."
Joost: "I can see they've taken it very hard. Parents [is] not made to bury your own child... that doesn't matter how old you are."
The second of three brothers, Joost van der Westhuizen grew up with big dreams.
Joost: "All I wanted to do... It was a teacher at school said to me: 'Van der Westerhuizen, you will never make a life out of rugby.'"
Derek: "Have you ever seen her since?"
Joost: "Ja, at our reunion. She came for an autograph and I said, 'No.'"
Derek: "No, you didn't."
Joost: "No, I did. And then I laughed and I said, 'In front of my whole class, say sorry and then I'll do it.' So it was a joke."
Derek: "You're big for a scrumhalf? How did that happen?"
Joost: "I was born this way (laughs). I basically... what happened was, at primary school I played prop, hooker and wing, and I never saw the ball. So I decided No. 9 gets the ball, that's what I want to play."
He went on to become the best scrumhalf the game has ever seen.
The legendary No. 9 still holds the world record for the most test tries by a scrumhalf, having crossed the line 38 times.
Part of the squad that brought glory to South Africa in the 1995 World Cup, Joost was capped 89 times in his ten year career.
Derek: "Would I be right in saying that you're treating this challenge almost like a big rugby test?"
Joost: "Ja, it is quite simple. I had my first half. I had my half-time. So it is going to be a tough second half."
Motor neuron disease is an incurable and deadly condition - robbing it's victims of the ability to move, to talk and, ultimately, to breathe.
In the face of this devastating diagnosis, rugby legend Joost van der Westhuizen is positive and determined.
Joost: "For me it is like a rugby game. You have to have a game plan. So I feel my game plan is in place. Now I have to play the game."
He is driven by a new purpose in life.
Joost: "I need to reach other MND patients and give them hope. If I can help to advance the quality of MND patients of their life at least they're going to have a happy life."
Nathania de Kock (J9 Marketing Manager): "He's got the same type that Joost has got [referring to a J9 patient]. It is attacking his upper body first; he has lost his speech."
Every week, Joost and J9 foundation staff identify an MND patient in need of support and plan a surprise visit.
Nathania: "He's losing hope and he is feeling like he is in this alone. So it is really about motivation. And he also said he's a huge rugby fan."
Joost: "Okay, now, like last week, let's say there are any press. I don't speak there. You speak... and you... because it is about them, not me."
So it's off to Johannesburg south to visit Martin Ferreira.
Joost: "Hello! Are you well? Are you well? Relax, come, relax (hugs Martin). We had to come say 'Hello' and have a drink with you."
Diagnosed five months ago, the disease has robbed Martin of his speech, so he writes or types to communicate.
Joost: "No... He says, 'It's an honour.' It is our honour."
They offer emotional, financial and medical support.
Quinton van der Walt (J9 Chief Coordinator): "We are going to look at doing a better absorbent so that your body can accept everything. You can't cry again, because I'm going to cry again... I'm trying to talk to you."
Stacey Ferreira (Daughter): "Dad's powerful tool has always been in his voice and he used to be an incredible speaker. So, ja, he is quite frustrated."
Mildri Ferreira (Wife): "I think it is one of the hardest things to lose something that should come so naturally."
Grant Ferreira (Son): "One of the hardest things about this disease is it doesn't affect your mind. He still thinks [the same way as] when he was well."
Derek: "Ja, that's the same with Joost."
Joost: "(to Martin) Who do you support?"
Quinton: "No! Come guys, we have to go."
Derek: "Were you surprised to see Joost the way he's looking now?"
Grant: "I was shocked; I couldn't believe he was just looking that good."
Joost: "He [Martin] is asking how am I doing. (To Martin) When I see people like you I am doing well because we have family."
(Partly audible) Martin: "I was worried about you."
Joost: "And there you talk."
(Partly audible) Martin: "What you are doing is [good]."
Joost: "It is a small thing."
To do small things like this, Joost calls in some high-flying friends.
(In helicopter) Joost: "We are having breakfast with a few rugby players. Then it's go."
He's hosting a golf day at Zwartkops to raise funds for MND patients and his own medical bills.
Derek: "You arrive in style..."
Derek: "... We arrive by ox cart."
And some big hitters are out to support him.
James Small (Springbok rugby legend): "I played with him, trained with him... an amazing athlete. So, it's a sad thing, but he's a strong man and he's got a lot of dignity."
Jannie de Beer (Springbok rugby legend): "He's not going to say, 'Well, that is it.' He is going to stand up and make a difference."
James: "I'm very proud of him."
Joost: "Evidence on camera."
Joost: "Friday morning... awesome day today. We are off to Dr Kritzinger and later on I'm going to see my babies!"
Joost sees his neurosurgeon every three months and this is the first time since starting experimental treatment.
MND affects five in a hundred thousand people.
Some cases are genetic, but the cause in most is not known.
Dr Pieter Kritzinger (Neurologist): "It is unusual to see a young person like Joost with motor neurone disease. That is quite unusual. It is normally people 60 or even 70 plus."
An early sign of the disease is twitching muscles.
Dr Kritzinger: "If the nerve cell is irritated, you get this kind of jumping."
In Joost's case it seems to have improved.
Dr Kritzinger: "It was much worse, ja."
... the first of a few hopeful signs.
Dr Kritzinger: "The feet are quite strong."
Dr Kritzinger: "Joost, you look well. There is definitely a stabilisation and even improvement."
Derek: "So what you're seeing now, would you say is unusual?"
Dr Kritzinger: "It is typical motor neurone disease. It will be unusual to stabilise... ja, it will."
It's the best news Joost could hope for.
Derek: "It's going to be tough, but do you feel you can win it?"
Joost: "Ja. The main thing is, people must know you are still alive; there is still hope, and don't let people feel sorry for you."
Derek: "The last thing you want is pity?"
Joost: "Give me pity I'll walk away (laughs). No, we are still alive."
IMPORTANT DISCLAIMER:While every attempt has been made to ensure this transcript or summary is accurate, Carte Blanche or its agents cannot be held liable for any claims arising out of inaccuracies caused by human error or electronic fault. This transcript was typed from a transcription recording unit and not from an original script, so due to the possibility of mishearing and the difficulty, in some cases, of identifying individual speakers, errors cannot be ruled out.