‘It’s heartbreaking’: QLD Origin legend Carl Webb opens up on shock battle with MND
Queensland Origin great Carl Webb was known for his strength, passion and pride. And while his shock MND diagnosis may be weakening him physically, it’s those attributes that will carry him through this battle. READ HIS STORY HERE
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Queensland legend Carl Webb never met an opponent he couldn’t beat.
Until now.
Known on the rugby league field for his strength, grit, passion and pride, Webb has found himself in a fight that is testing all those physical attributes, after he received the devastating diagnosis that he has motor neurone disease in February.
In an in-depth interview, the 39-year-old has opened up for the first time to The Courier-Mail about his diagnosis, his ongoing battle with the incurable disease and his hopes for the legacy he can leave behind.
And, in that true mighty Maroons spirit, Webb is determined to keep moving forward and to live the best life he can with his four kids, his family and his mates.
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THE DIAGNOSIS
For 11 years, Mt Isa product Webb was one of the toughest, most-hardened forwards in the NRL.
He played for the Broncos, Cowboys and Eels, and donned the green and gold for Australia, but it was on the State of Origin stage in a Queensland Maroons jersey where Webb shone the brightest.
The image that resonates with most people when they hear his name is from the 2005 series, when Webb – with his iconic “Q” haircut – took on Blues forward Luke Bailey.
But it was in those same, strong arms that pinned Bailey to the hallowed turf of Suncorp Stadium where Webb started to notice he was growing weaker and unable to complete simple day-to-day tasks late last year.
From doing a push up to buttoning his shirt, the former Indigenous All Star was struggling.
“I’ve always been strong and I noticed it a while back that I was losing that,” he said.
“Even a push up, trying to do a push up, and realising that was really tough. It used to be easy to do those sorts of things.
“That was alarming at first … to do something as basic as a push up and I struggled to do it. I thought, ‘I should be able to do this, I have always been able to do that’.
“That was a wake up call. I knew something was wrong and it started through my hands.
“It was in late 2019 when I started to notice those differences, just with strength and dexterity and co-ordination.
“It was just going to work and trying to button my shirt up. Small things like that had just become challenging … doing up your buttons or your zips or holding a pen and writing things.
“I’d have days where I could definitely feel a difference but the next day I would be fine.
“That progressively got worse but that’s just the disease.
“It attacks the nerves which send those messages to the muscles and then movement, strength and range of movement are really affected.”
Around the time Webb started to notice these issues with his hands and arms, his ex-wife and three youngest kids decided to move back to Brisbane.
Webb decided to leave his job in the mines in Dysart and return to the Queensland capital with them.
But on the way down the Sunshine State, he stopped in at his former Dalby home to see his mother, Shirley, and it was a trip to the GP that sparked the idea he could have MND.
He was given a referral to a Brisbane specialist and by February 2020, he had his official diagnosis.
“It was a shock,” he said.
“Even at the initial specialist appointments where I was told it could be a possibility that it was motor neurone, I remember walking out of the specialists in a haze.
“I was a little bit confused, shocked, more than anything.
“I hadn’t heard a great deal about MND at all. But it’s just like anything in that after diagnosis, I started noticing it everywhere then.
“Other sufferers, plus partners of sufferers, reached out to me personally.
“There are some who are finding it tough with diagnosis, some who choose to live on ignoring it, and others reached out to support (me) as well.
“It’s different for all sufferers where it attacks them. I have noticed other sufferers have it in their hands, shoulders and arms like it is with me.
“But then it travels through the body and it’s a really debilitating disease. It’s a nasty one.”
Motor neurone disease affects the nerves that communicate between the brain and the muscle, making it difficult for sufferers to move and – over time – speak, swallow and breathe.
Tragically, the average life expectancy after diagnosis is two to three years.
For Webb, it is in the arms where this muscle weakening and wastage has begun, but already he is beginning to feel it elsewhere, including through the legs that enabled him to notch up a lengthy NRL career.
MATESHIP, FAMILY AND POSITIVITY
While MND may be taking the strength from Webb’s body, one thing that is immediately obvious is he is still extremely strong mentally.
He is determined to enjoy his time, be with his four children, and to find the positivity where he can, even if he is starting to notice that weakening throughout his body.
“I can feel the strength leaving my legs at the moment,” he said.
“It’s a slow process. For me, I’ll find it’ll plateau and I’ll have a good couple of weeks.
“Then I’ll feel it take over again and have a little decline for a couple of weeks before I plateau off again.
“Talking to other sufferers, they’ve said similar things. That’s been good for me as well to meet other people and speak on that level with them.
“It was really confronting at the beginning to see the guys who are well into it and just how cruel it can be.
“For me, it’s now about living with it and understanding it.
“Some mornings I still do wake up and it’s like, ‘oh yeah, that’s right’. It’s a daily reminder.
“But after the initial shock, I don’t think I made a conscious choice to just be happy. It’s just what happened.
“I definitely have a lot of good support systems around me in friends and family. It’s not a conscious effort to be strong for them.
“It’s just positive. Everyone around me is positive and the support I’m receiving has been a big help, not just from friends and family but the rugby league world with (Former Origin Greats) and Men of League, and the medical support.
“For me, it is progressing along however I’m still quite capable and independent but there’s still those support systems when I need them.”
Webb is now living in a unit purpose built for disability, which is within walking distance to his three youngest kids’ school and his ex-wife’s house.
His oldest son, Carter, 14, is a boarder at St Brendan’s in Yeppoon.
He also uses the Home Instead care service to help prepare meals for himself and his family, so he can save energy for other things.
While there are not many ways to prolong life with this terrible disease, Webb said one of the best things he has discovered is relying on help when it is available and “banking his energy”.
“It’s a degenerative disease so one of the things they do suggest is banking your energy for the times with the kids and when you want to do the fun things,” he said.
“Fatigue is a big thing as well. Going shopping for example used to be a normal thing, now it takes a bit of planning and physical effort, so that energy banking has been really important.
“It’s about preparing and understanding you just can’t get up and go like you used to … it’s not that easy anymore.
“(My friend) Damon and I … we have our camping trips and different things. We take the kids away and that’s great.
“The mums love it because they get the break over the weekend while the kids are away with dad.”
And while he is mostly in a positive headspace, there is no denying Webb has his fears, particularly around the future of his four children.
HIS FEARS
Webb said that while he promotes positivity, he would be “crazy” if he didn’t have the bad days along with the good.
And most of those days come down to thinking about his kids – Carter, 14, Hunter, 10, Brooklyn, 8, and Tyson, 3.
With no cure for MND, Webb knows there will be a time he can’t physically be there for his children and it’s a concept that scares him.
“It’s really about the kids,” Webb said.
“You want the best for your kids and for them to have really positive futures. I’ve always been an active father. I have my kids all the time.
“It’s heartbreaking.
“My oldest boy, he can get his head around it … there’s a lot of confusion with my youngest kids.
“They know Daddy is sick and we’ve made arrangements with these wonderful support systems, with child psychologists who form relationships with the kids and we go through this gently.
“That’s a continued process and that will continue throughout the condition.”
And that’s part of the reason why Webb has started his foundation.
He wants to be seen tackling this disease in anyway he can, to be seen as a “proactive” face in the fight against MND.
He wants to create a legacy that he and his family can be proud of.
HIS HOPES
On Friday Webb will launch the Carl Webb Foundation surrounded by his loved ones and those who helped him get the foundation off the ground, including good friend Damon Keating, Damon’s wife Deanna, and Deanna’s friend, Amelia Oberhardt.
He says his partner, Cassandra, and brother, Darren, have also been outstanding in their support.
Together, they will launch the foundation today and then start to host a variety of fundraisers from early next year.
It’s a project Webb is passionate about, but also a foundation for all those other sufferers.
“This is a good opportunity to raise awareness and help where I can,” he said.
“It’s an opportunity for me to see everyone and thank everyone and get everyone together for something positive as well.
“I’m not expecting miracles or anything (in the future). I’ve been really fortunate to have friends that are active and positive with me and that were keen to help and jump in on this ride with me and lead it up.
“I was just keen to be active in the face of it. I didn’t want to isolate myself and get into that sort of rut.
“It’s been good to keep busy and hopefully for this to turn into something bigger, something ongoing and a legacy that I can be part of, that can continue on and do good things in the future.”
To donate or learn more about the Carl Webb Foundation, visit carlwebbfoundation.org.
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