Movers and Shakers at The OTC!
- Team OTC
- Jun 13
- 13 min read
Sir Nicholas Mostyn a former high court judge diagnosed with Parkinson’s in 2021 and Jerry Collier, a retired consultant surgeon diagnosed in 2012, came to The Official Test Centre (The OTC) to get out on the water and windsurf this week, they discussed with me their experiences with the condition and the benefits of exercise. They emphasise the importance of staying active, promoting initiatives like the ‘Movers and Shakers’ podcast and advocating for government action through a petition (parkypetition.com) Simon Bornhoft, Windwise windsurfing coach and Luis, Nicholas PT, share their strategies to help Nicholas and Jerry improve their windsurfing skills despite Parkinson’s. This blog highlights the physical and mental challenges of the disease and the positive impact of exercise on managing the symptoms. Watching Sir Mostyn and Jerry was Deepak, also diagnosed with Parkinson's and part of the Weymouth & Dorchester Parkinson's Support Group. Movers and Shakers at The OTC!
By Emma Maguire.
Sir Nicholas Mostyn said: “I was a high court judge, but I stopped being a high court judge in 2023 following a diagnosis of Parkinson's. I was actually diagnosed with Parkinson's in 2021, a month after I last windsurfed with Simon Bornhoft in Bonaire in the Caribbean, and I was not in very good shape there, because I hadn't been given any of the medications. I had a really bad tremor. And in fact, I remember Simon saying to me, you've got to get that tremor checked out. So I did, and that led to me retiring because I couldn't do the job as well as I wanted to in as I say, 2023 and since then, I have devoted myself, because I formed a group called the 'Movers and Shakers' where we do the podcast, which I highly recommend, as well as my other one, which is called 'Law and Disorder', but I highly recommend it. And it's a group of five of us. We're all slightly sharp elbow people who had high public profile me as a judge, and then the others, all working in the BBC like Jeremy Paxman, who's not well, Rory Cellan-Jones, who is the technology correspondent, and Mark Mardell, who is the Europe and North America correspondent, and Gillian Lacey-Solymar, who did working lunch. We formed this group called Movers and Shakers, and we have devoted ourselves. It's about living with Parkinson's, and we've devoted ourselves to a series of episodes, one of which, in fact, had Jerry on it, who is now going out on the water with me today."
Jerry Collier said: “I'm a retired consultant surgeon, retired from the NHS. I was diagnosed with Parkinson's in 2012. I've had Parkinson's for 13 years. I retired from the NHS. I'm a big proponent for the benefits of exercise in Parkinson's, it's been enormously beneficial to me, and I've done a lot in my local area, which is Horsham, to promote exercise and promote something called PD warrior, which is an exercise regime which is specific to Parkinson's. I believe in living your dreams, and doing what you can do while you can do it. So we're all going to go windsurfing today, because I think that's, I think that's going to be fabulous. And I'm really looking forward to windsurfing with Nick again, because we haven't windsurfed together for about 10 years."
Sir Nicholas said: "The last time I windsurfed was five years ago, and I haven't stepped on a windsurfer for five years, that was with Simon on one of his clinics, Simon's clinics, are well worth going on, more than well worth going on. When I was on that clinic I was unmedicated, because I hadn't been diagnosed. Now I'm medicated and I'm much fitter than I was. I hope to see that I can windsurf, but it does involve quite a lot of moving parts, doesn't it?"
Jerry said: "The problem with Parkinson's is Parkinson's affects your range of movement, your coordination and your ability to multitask. And those are all through those three things are all needed in in spades. In windsurfing, I've been windsurfing a bit more recently than Nick, and what I find most difficult is the ability to start. So once I'm going, I'm not too bad, but it's, it's actually physically that starting process, that's difficult. And this is, this is typical for things with Parkinson's, because you can liken Parkinson's to lacking a starter motor in your car. Once you've jump started it and it's up and running, you're good to go. But starting is tricky."
Nicholas said: "It's true that the you get the symptoms when you're at rest, don't you? Not when you're up. So if you're playing tennis, for example, and you're in a rally, you can do that, but serving is really difficult. I mean, it's interesting, how exactly what you said. Just connecting the brain to make make you do it from from a standing start is is difficult, but I'm looking forward to today to see if we can do this."
Windsurfing Coach, Simon Bornhoft said: "I run Windwise. And a lot of people in windsurfing will know my involvement in teaching people. And I've had the pleasure of teaching Nicholas and Jerry over the years when they were, you know, pre-Parkinson's, and got them to some really good levels. Jerry was doing carve gybing and downwind 360s. Nicholas was blasting around the straps and going into carve gybes and things like that. And then when they got diagnosed with Parkinson's, that changes a lot, and their time on the water becomes very restricted, as they were just saying about how they get going. So somebody like Jerry, really difficult to beach start or water start. But then once we actually got him up and going, he'd be able to do a full planing carve gybe and then stop in the water and not be at a water start again. So we tried to come up with different systems and different mechanisms to try and help them break through that and get that sort of board going as well as the rig going and the body going all at the same time. So this sticking and this sort of being restricted is a really difficult thing to do, and windsurfing is a hard enough sport, so people need a lot of help to try and break through some barriers. So it's unbelievable what they've achieved to see Jerry recently blasting along, going through carve gybes with what the condition he has to cope with is extraordinary. And I'm hoping we can do the same with Nicholas. It's been a while since we have been on the water together, but I've got high hopes, and we can make the most of it. The most important thing is to get people out in the water and trying to get moving. And we believe that this activity and exercise is going to really try and help. So that's our plan."
Nicholas personal trainer Luis said: "I've been training Nick for the last seven years, and the things that we've been doing recently was training more focus on being able to do windsurfing or try to minimise the challenge that we will have now, once that he's on the water, so being able to do overhead press, or being able to pull himself up as well as keep the balance on the board and try to improve the coordination. Yeah, I think I'm pretty optimistic. Let's see. Nick is always surprising me. He's a warrior. So that's definitely, it will be fine. And I think that everything that I challenge you to try you do new things that challenge your capacities, Parkinson as well. But everywhere, everyone will be benefit from that."
Nicholas said: "To inspire. It is our mission, but where the mission is only going to be realised is if we can get government to take Parkinson's more seriously. For which purpose can I urge your readers to sign the petition? It's a parky petition.com. It's the parliamentary petition. We need 100,000 signatures. We're halfway there. When we get 100,000 signatures, we're entitled to a formal debate with the minister in Parliament when we will press these points. Because it's one thing just talking about it. It's another thing to get government to bring this disease out of the darkness and into the light. So parky petition.com. Please go there and sign.
Nicholas added: "That's why, as Luis was saying, Our motto is take each day as it comes, and live it to the full. That's what we try and do."
Jerry said: "I'm a little bit sort of shy and I don't like blow my own trumpet, but that is what people tell me that I am inspiring them and that's, what I'm trying to do. And this, really, the crux of this is actually not about windsurfing. It's, it's about, it's about living your dreams, living and realising your dreams, and making the most of what you can do, and staying active. Because if you stay active with Parkinson's, then you can do these things. If you lie down, if you lie down, sit on the sofa and don't do anything, you're gonna, you're going to go down downhill very quickly."
Talking about the anticipation, Sir Nicholas said: "I feel excited and nervous. But I have got Simon here, and I'm expecting the last time he sailed right behind me, shouting at me. So I'm expecting this to be repeated, words of encouragement. Yes, it is his opportunity to abuse me, as I always say, having me do this, it's time to realise the dream. live the day. And the more exercise you can take, the better it will be for you. The less exercise the moment, as Jerry says, the moment you get become a sofa potato, you're on the downward slope."
Jerry said: "Yeah, I think you got to get in. You got to get involved with exercise. For me, there are three key things to exercise you. One, it's got to be something you love and you enjoy, because you've got to be self motivated to do it. Two, it's got to be, ideally, it's got to be something that you can do with other people so it's sociable. And you also have a little bit of you also have a little bit of peer contact and a little bit of competition to keep you at it. And I have to say, the third thing is, if you're going to do it, if you're going to do an exercise, or you're going to do some kind of sport, it really, really, really helps to have a coach like Simon or a personal trainer like Luis, people to people to advise you about what's possible for you and how to maximise, maximise your progress. So I think those three, those three caveats, apply to pretty much every aspect of, every aspect of sport and exercise that people with Parkinson's."
Nicholas said: "So the reality of living with Parkinson's, it is a progressive neurodegenerative disease. So you only have to describe it in that way to realise that when you wake up in the middle of the night and you're thinking about the future, it's not that rosy. But I mean, you know, one has to try. One has to face up those, those demons, and live the day."
Jerry said: "What exercise does in the brain? I don't think anybody is really sure from a medical perspective, but there's no doubt it's doing something to rewire the inside of your brain, to improve your movement and improve your symptoms. But exercise is also beneficial from a mental point of view. And I know for sure that the mental side of Parkinson's is almost as tough as the physical side of it, and the isolation that Parkinson's bringing you, brings you the self consciousness about your tremor. All of those things have a negative mental aspect and Sport and Exercise is is very, very good at counteracting that."
Nicholas said: "I mean, in our in our movers and shakers, we divide into the Tiggers and the Eeyore's and the there are more Eeyore's than Tiggers. It's quite easy to be an Eeyore when you're got Parkinson's, isn't it, and to be gloomy and not see anything, and not being relentlessly positive like Tigger. I mean, it is annoying, but, but, I mean it is. It is a better way of getting through. I mean, of course, if you're relentlessly positive, you are habitually disappointed, I believe I'm going to be doing carve gybes, but, I mean, but it is a better way of going through life, I think, generally, but if, especially if you've got a incurable disease, it is better to approach it as positively as you can, because otherwise you slip into a spiral of despair, which there's no exit, really."
Jerry said: "yeah, so he's absolutely spot on about that. Yeah, absolutely spot on. It really helped. It really helps to be positive about things. Unfortunately, there is no cure for Parkinson's. The current research on Parkinson's is, I mean, it's hopeless. We don't pin our hopes on how many have seven years of trials, and they failed phase three, and it's found to be useless."
Nicholas said: "So the thing about Parkinson's is, when you look at the drugs used to treat Parkinson's levodopa is the index drug, which was developed in 1960, there is no other medical condition where the index drug hasn't improved, or hasn't been replaced. In that, in that time period. So we're 55 years off. Well, hang on, more than that. Well, a long time long. We're a very long time off after the development of levodopa. And we don't, we don't have anything better than that, which is why exercise is so good. I mean, levodopa is, as you say, is the gold standard, and it's not so much gold standard. It's the only standard. I mean, it's enhanced by these enzyme blockers, but that's just making the levodopa work better. I mean, so the enzyme blockers are themselves, that they're clever, but they don't. You're still basing on levodopa. Which brings me to mention, my new project, which is to bring levodopa to Africa, because there are 3 million people, 3 million people in Sub Saharan Africa who have Parkinson's and no drugs at all. So that's going to be the next project, which I should be doing."
Luis said: "You asked before about the benefits of exercise, one of the proven benefits is that it will produce more dopamine, and it will increase as well. With certain type of exercise, you can increase the sensibility of the receptors in the brain."
Simon said: "So we're gonna reacquaint Nicholas with a windsurfing board and with the wind, and we're gonna do a little bit on the land to make sure he's all ready to go. Jerry, I think, has windsurfed more recently. So that was very successful. So we're hoping to sort of get them blasting along, if we can just get them out back all in one piece and have a good day, then that's our main aim. Anything we can do to improve that. I'm going to give Nicholas some gentle encouragement. Jerry the same, and we're just going to try and help them with some energy saving tips as well, because a lot of things about windsurfing is often about getting the technique right, but a lot of things that we do on our Wind Wise course is also about saving energy and being more efficient. So technically, getting it right is always going to help you, but getting it so you're using less energy more efficient, so you can spend more time on the water. And if you're coping with something that is challenging you physically, then that's going to make a big, big difference as well. So we're going to try and make this as positive as possible. And I'm really looking forward to the two incredible, characters, and we're gonna have a great day."
Watching Sir Nicholas and Jerry was Deepak from the Weymouth & Dorchester Parkinson's Support Group, Deepak said: "At the moment, Parkinson's affects me with losing my balance and having a tiredness, which means that I need to sit down every time I need to get up and walk. Should be walking, should be dancing, but I tend to sit down and watch. And it's the first, I mean, diagnosed in 2018 but the first four years, I thought they made a mistake, because there was nothing was wrong with me, because I had non tremulous so nobody could see me shake. And that's why I started listening to movers and shakers, because I thought maybe they'd be shaking more than I will. But yeah, it's now the last year is all caught up with me. I'm getting to the stage that is getting faster and faster, to the point where all the symptoms might come or maybe they won't come. I hope they don't, but it's just a question of joining it as much as we can to see what other people are doing and create a group of us that rely on each other's news."
Speaking to me about how it felt to see Sir Nicholas getting ready to go out on the water, Deepak said: "I think I can still do it, but when you get to do something, it doesn't happen. The same as gymnastics. I used to do that for six years, and I can't stand properly straight without falling over. So it's just question of getting seeing more people around me that have got different problems, and yet they're laughing and smiling like Sir Nicholas, which gives you, you know, positive vibes, isn't it? Yeah, so that's where I'm at the moment, and hopefully it'll stay here."
Deepak added: "I'm Deepak, yes, and, yeah, that's my name, but they call me D, yeah, sure. Deepak Chopra is the American version of me, yeah, and he does more work than I do. Oh yeah, I forgot that. I was born in 45 Yeah, so that makes me nearly 80."
Deepak's wife said: "it's so positive to see people doing things, and imagine is doing so many different things. So yeah, for D, it's great to see that aspect of it. There's more socialising going on with people with Parkinson's."
Deepak said: "Yes, we can talk together same level until, till they start to compare each other's movements."
When I was chatting with Deepak and his wife I found out that Deepak goes to Parkinson dance on Tuesday afternoons, in Dorchester and yoga for Parkinson sufferers.
Deepak's wife said: "The yoga, which is for Parkinson suffers, again in Dorchester. It is so supportive to have people to talk to, because we moved back down from London. So not knowing many people. You know through Parkinson's, we've got to know a lot of people, and they all support super people, and they all support each other, which is lovely. Yeah, every month there's meetings, etc. So it's really, it's a really supportive group."
Deepak was discussing the fact that Parkinson's is known to people, but people just see the tremor, and that's what they think. There's a lot more to it, a lot more symptoms.
Deepak said: "And I think it's good to see other sufferers who are not suffering, they're actually enjoying themselves. And to be able to do that with Parkinson's is a positive."
I asked Deepak was a positive mindset half the battle?
Deepak said: "I definitely agree with that. Yes, nice to watch Nicholas laugh and smile, that is a good sign. Could join in. Amazing. Don't need a drink to do that anymore."
Useful information
Click here to find out more about the Weymouth & Dorchester Parkinson's Support Group.
Sign the ‘Parky Petition’ to urge the government to take Parkinson’s more seriously. Click here.
Listen to the ‘Movers and Shakers’ podcast which raises awareness about living with Parkinson’s. Click here.
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