One of the stalwarts of the Australian cycling program for many years is Gary West. The coach has been a regular on the infield of the velodrome for decades, a key advisor to sprinters for generations.

Some of the conquests he and his riders have achieved are well documented, but there are plenty of other stories that he was probably saving up for that time when, eventually, he would step aside as national sprint coach.

The Rio Games provided him with yet another chance to see world-class cycling from a privileged position, trackside and calling the shots.

And, of course, the Games yielded another podium moment for one of his ‘pupils’: Anna Meares scored bronze in the keirin and another medal could be added to his long list of accomplishments on the international scene.

Upon his return, he was diagnosed with MND.

People who know about this illness understand what those three letters mean: motor neurone disease isn’t pretty. It strikes at random and slowly affects nerve cells which degenerate over time. And…

Well, the effects alter between sufferers but the prognosis also isn’t pretty.


McCulloch, Meares and West... London 2012. Photo: Graham Watson

McCulloch, Meares and West… London 2012.
Photo: Graham Watson


I have written about MND in RIDE before. A close friend died a couple of years ago after having been diagnosed with the illness only two years earlier.

It is a topic that’s dear to me and I received the news about West’s diagnosis with great sadness.

Ian Davis has been raising awareness about MND for years. He too has been diagnosed and he has explained the effects of MND in a column several years ago.


– Please take a moment to read: Ian’s overview of MND

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At the Australian Cyclist of the Year awards on Friday 19 November 2016, Anna Meares was acknowledged for an outstanding sporting career that ultimately came to an end in Rio. At the end of her time at the lecturn, she spoke about Gary West and his plight.

It was an emotional moment as she explained that West had trouble speaking (because of MND) and how the pair were joining forces with Davis and others to try and raise awareness of what her coach is going through.

There are thousands of other MND sufferers and any funding for research will go a long way.

West, Meares, Davis and others like Francine Pinnuck and Bec Daniher are working towards several initiatives that relate to MND. And the cycling community is coming together to work with one another to try and find solutions to an illness that affects many.


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Gary West explained that he doesn’t want to hear forecasts of “how long he’s got” or any other such diagnosis from doctors. He believes in “hope” and that’s how he has to approach each day.

He answered some questions about his state over the phone earlier today and below is a transcript of what he had to say.

I’ve known Gary for over 20 years and hearing him today was not a shock for I know what affect MND can have on sufferers. But I ask that, if you read the interview, you play the SoundCloud file as well to get an understanding of what has happened to West’s speech in the short time since he was formally diagnosed.

He is coherent and has full mental facility but it’s difficult to hear a man known for his strength sound so humble and weak.

My questions are loud, for the connection was not great… and his answers are softly spoken but poignant. There’s a message in here and ultimately it tells us: don’t lose hope.



– By Rob Arnold


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Q&A With Gary West about MND


RIDE: I wonder if you could give us a quick overview of when you knew that MND had hit you – or did you just sort of think that you were going a bit slower?

Gary West: “I had a few episodes early in the year, around my speech, and one thing led to another and I went off to see our team GP. Eventually I ended up having a few tests and they all came back clear.

“I was referred to a local neurologist here in Adelaide in May and sometime in May I was diagnosed with an auto immune disease known Myasthenia Gravis, or ‘MG’, which is a treatable disease with medication.

“They gave me the medication and I continued on with work, preparing our team for Rio – and off to a training camp and ultimately the Games in Rio.

“It wasn’t until I came back at the end of August that I had routine appointment with my local neurologist and it was in that appointment he dropped the bombshell that he didn’t believe I had MG, but the more sinister MND.

“So it was the beginning of September when I was diagnosed.”


It’s not news that anyone would take very well. The diagnosis is, basically, ‘How long have you got to go…’ do you have any forecast on the state of your deterioration?

“No. I’m not interested to know or I’ve not asked. And I prefer people – specialists – not to talk about timelines.

“I believe in hope.

“And I am aware that most MND, or all, MND cases are different. So I don’t look at timelines…”


That makes a lot of sense to me. I know you’re working with Ian Davis. He’s a fantastic doctor and he gives a lot of good instruction for people with MND. What has he told you [about] how to manage it? Has he got some advise to help you through your darker times?

“The best thing about Ian and guys like Neale Daniher – and now I met a great bloke here in Adelaide by the name of Damian Lane – all these guys have MND and I’m learning from them that… [with MND] one size doesn’t fit all and you have to go about life as best you can.

“But what I have learned is – what I have been completely blown away with – is the sheer openness and generosity that guys like this have.

“Ian [and I], we talk regularly and Neale and his wife [Bec], no matter what time of day or night, they are there – we are here – for each other. That’s been the most outstanding aspect of this condition.

“Yeah, I do look to Ian for advice… and he’s more than willing, as are the others, to share and it’s very important because it takes oneself out of the bubble and you realise that others have similar issues and challenges.

“So the engagement and the interaction with them has been outstanding.”


I’m really pleased to hear that. We can obviously hear just by the way you’re speaking that it’s hit your speech very severely. I know you as a fast-speaking, articulate man and you need to search for your words now. Can you talk me through other affects that you’re currently going through?

“Yeah. My version of MND has affected my speech principally. That was the first sign.

“I try and do my best with speech.

“I have a speech ‘app’ that I use occasionally, so speech is the main aspect at the moment.

“To a lesser extent, swallowing and drinking and eating … I have to be mindful of that activity.

“And in recent weeks I felt a deterioration of movement in my arms and some affects on my fine motor skills in my hands, in particular the fingers.

“I’m monitoring all of these with my team of doctors and specialists.

“Currently my legs are not affected. I try and walk most days. But the main issue at the moment is around my speech.”


Okay. I understand. I guess the big question is, have you been able to get on the bike and do like Ian did when he was first diagnosed and get out for a ride?

“I am pretty sure I can. I haven’t actually ridden the bike for a while, Rob.

“I live in the Adelaide hills and the choice of having to go up and down isn’t ideal.

“I actually get more enjoyment from walking, of all things.

“I live in a very beautiful place and I enjoy walking so I don’t ride the bike at the moment.”


…a lot of people will hear you and they’ll think that you don’t have full mental capacity. But I’ve had a friend who had MND and know that he was coherent right through to the very end. How is your mind operating?

“Oh, no worries at all! You are right, cognitively there’s no evidence that MND affects one’s ability to think and rationalise.

“There are, I believe, some severe cases where dementia can come into play but they are few as far as I know.

“When people hear me speak, they try to make an analysis thinking that I maybe cannot hear or I may not be able to interpret… that’s not the case at all.

“I had actually a person speak to me on Friday night at the CA awards and afterwards I thought, ‘She’s talking to me like I was limited in my ability to understand or hear.’

“I was quite shocked afterwards.”




What will you do in the next couple of weeks/months to try and reduce the affects that MND has? Is there some medication that you can take? What’s the routine? What do the doctors advise at this point?

“The professional specialist advice is not overly encouraging. Matter of fact, you become quite despondent with the specialists.

“They are more interested in monitoring your decline rather than be proactive.

“In saying that, I have met a doctor who has a slightly different view on treatment and in fact he was the first doctor since my diagnosis who said to me, ‘We’re going to have a crack at this to try and allow to have longevity.’

“And I remember thinking, ‘Wow! Here’s a guy that actually thinks we can try and do something…’ Rather than the professional approach which is pretty much, ‘Oh well, you’ve got MND so you’re a failure.’

“I have changed my diet quite dramatically. I use supplementation as well as some medicines.

“There is really only one medicine that is prescribed and by no way is there is a cure.

“They refer to it as ‘possibly extending life by up to three or four months’.

“That’s the only medication that is prescribed here in Australia.”


Gary this is a story that’s going to be ongoing and I hope we’ll stay in touch in the next little while and track your progress. I’m with you, I’m all for having hope and belief that something someday will come to make MND sufferers not go through the agony that others have.

“Yeah. And again, just finally, if I may: the reason that Anna and myself and her manager Francine started up Cycling Cares is to raise awareness and to allow people in the greater cycling community to be involved.

“We are now working with Ian’s foundation and we are on board and we are trying to raise more funds to allow more research which we all hope will end in a cure.”




– Interview by Rob Arnold


Meares and West in action... Photo: Yuzuru Sunada

Meares and West in action…
Photo: Yuzuru Sunada