Sex, Shopping & Gambling - Out of Control

[Music] I'm Aaron, very warm welcome to Two Parkers and a pod that podcasts four people with Parkinson's, by people with Parkinson's. I'm Dave, he's Cuin, together we've had the dreaded logo for 28 years. Good, how you doing? I'm alright, thanks. It is a warm welcome because the weather is warming up and I'm having a cup of tea which is a British way of starting a podcast right? The weather in the tea. Exactly perfect, is it nice, Kup? But what do you do, do you actually tea? Oh great, oh great. I would say, I was some of my wife that Yorkshire Tea came from the tea plantations of Harrogate on the hills of the Angle Plants. Tea plantations like Sri Lanka. Yeah, and she believed me. I mean, I've got the big box of Yorkshire Tea there Dave. I've got massive sack for actually. I've got a box of sack, he's going to show us here. I've got a sack with me. I've got this. It's in the Yorkshire Tea. Wonderful, wonderful. It's from tea, if you're not familiar with it right? Beautiful tea, yeah great tea. Enough of tea, what's being going on with you Dave? I went on a big night's out there today, had a great time. I know you've been on a big night out because you're in the papers Dave. Back in the news, you're not telling me. You made the daily mail, yeah, yeah. Daily mail again Dave. I think that's what you're leaving do by a girl called Claire Tomlinson who used to present on Skywood. She was your anchor, co-anchor? Yeah, I can't care for a while, yeah, yeah. We were just presenting together a bit and we were on part of the launch team of SkySports News. So it took a picture of a original line up from 28 years ago and how we look now, you know. You've all aged well, you've all aged well. Yeah, so it's great and it's easy to say no to these things isn't it but I was really pleased to turn it up. Everyone said pleased to see me. I got a round of applause. I got a round of applause in it was lovely. I was very nervous because you wonder how you're going to be and you would know your symptoms are going to be as it turned out. They don't mean rush of meeting everybody and seeing everybody. I felt great all night, you know, a couple of pints and just done it a lovely time. So I really pleased I went and it gave me a lift the rest of the week. Better than you thought you would be. Yeah, massively so. Yeah, I felt so much better and I thought I looked pretty good as well. I dressed up for the night, you know, I was just… You do like dressing up there, you Dave? Yeah, I like my clothes so yeah, yeah. And you got a round of applause, you said? When I walked in, yeah, yeah. Food day, good to see you, good to see you. Thanks for making the effort. I'm really drinking it to say to get here. But it's very good and very good. There's a lesson there, isn't it Dave? You've got to show up, yeah. Yeah, you've got to show up. If you're invited to try and go, you know, you won't regret it. You're getting not going. You can go the other way, right? But if you're with friendly faces, then normally it kind of works out all right. I think the stress of swimming, if you haven't seen for a long time, can be quite a weird park, you know. You worry how people are going to see you and think you've got a bit worse and you know, if you can get out, go to these things, show up, it's great, you know. One of your colleagues here at a family member that was recently diagnosed and was reaching out to you for some advice, right? Yeah, I got a good bunker from this guy who used to work with us and who he is. His brother's diagnosed with Parkinson's and he's really struggling. So, you know, watching me suffer a word with his brother and down the line, you know, when he's ready to talk, so I've agreed to do that. But, you know, stressing out some family members is incredible, isn't it? You know, people don't know what to do when a family member has been diagnosed with Parkinson's. So, I said, listen to the podcast, even the older episodes are still relevant. So, the beginning is Guy to Parkinson's, the first one we did, which still seems to stand up, you know, really, really good. Yeah. So, all the episodes are still remain relevant, don't they? Yeah, everyone who've done all 58 of them suffer, this is episode 59. And what we talking about today, Dave? We've got some old Tithridge, who's an investigative journalist. He's been working on the Shadow World Series for Radio 4. He's done a series called Impulsive. He's spent a year investigating dopamine agonists. How Impulsive behavior can result from it? Gambling, sex addiction, shopping. Now, the chair of the Commons Health Committee has called on the UK's drug regulator to review warnings about medications which can cause impulsive behavior as a side effect. A BBC investigations found that for some patients, the drugs caused compulsive gambling or sexual behavior, a correspondent, Noel Tithridge, has this special investigation. He was an incredibly straight-laced, risk of us, person. Freddy's dad Bill was always a cautious man. He worked as a teacher in his whole career and then aged 54 retired early. He'd developed some symptoms around his movements and speech, went on to medication shortly after. Bill was prescribed drugs which boosted dopamine activity to treat Parkinson's, but his behavior started to change, watching pornography openly and driving erratically. Before long, he'd also sold the family home and suddenly needed money. He said it's invested, okay? Where? In Ghana. Hard to stowly, sank. These side effects of severe impulse controlled disorder, hypersexuality, made dad the perfect victim for a romance scam. Our investigations heard from scores of families who say these impulsive behaviors have led to huge debts, the breakup of families and even criminality. One man stole £600,000 to fund his impulsive behavior. Another woman lost over £150,000 to gambling. The UK's drug regulator, the MHRA, says it has no plans to strengthen warnings and doesn't list the frequency of these side effects because many people don't report them. It's not just a side effect that affects an individual. It's affecting their families, their communities. The chair of the UK Health Select Committee says this needs to change. It's so devastating as a lawmaker to see how badly those families have been let down by the system. But what does it mean, impulsive behaviors, and how likely is it that they could get it? At the moment, patients don't have that information and without it, how can they be expected to mitigate it? Manufacturers of the drugs say they were extensively trialled, continued to be approved by regulators around the world and side effects are clearly stated. Naltetheridge BBC News. Naltetheridge, welcome to two parks and a pod. Thanks for having me guys. Just explain how you got into the world with Parkinson's medication. Well, it was just a random conversation with a friend of my daughter about a year and a bit ago. She's a French lady and she was telling me about this story she'd read about in a French newspaper about a French man who was suing a pharmaceutical company for damages because he said that he hadn't been properly warned about the impulsive behaviors that he developed and that they were crazy while he'd basically ruined his relationship through a hypersexuality. He'd compulsively gambled 90,000 euros and he was saying that he wasn't properly warned. And my first reaction was like, really? Can that medication really be that powerful? And I sort of started me on a year-long quest really to find out more information where we've successively published stories and just been flooded with responses by people telling us about their own experiences or family members, partners, children, telling us about what their loved one had been through. They'd explain which drugs we're talking about here. Yeah, so this is a family of drugs called dopamine agonists. So they're used for a variety of conditions and with these conditions, they're just one of the armory, part of the armory that can be used to say treat Parkinson's. But they're an important component and they're widely prescribed. So there are three main drugs that are dopamine agonists which are used for Parkinson's. There's Rapinarol, Promopexol and reticuity and they've all got different brand names. So we were just talking just before we came on the year. They are quite prevalent but they seem to be less and less prevalent now because of cases coming to light where it shows some of these adverse behaviors, shall we say, and are trend amongst the neurologist community. And we had Professor Jane Alton, a few episodes ago talking about this very topic where she described it was the pendulum had swung back towards Leverdopa and or where Leverdopa was being prescribed in conjunction with agonists because they recognise these drugs can lead to this sort of behaviour. So it's not most cases, I think by my reckon it's about 50,000 people in the UK have prescribed an agonist out of 166,000 people in total population, most people are on Leverdopa. And even if you do experience some of that behaviour it doesn't necessarily mean it's a negative behaviour, right? Well, I mean the cases that we've covered, you know, really extreme cases where perhaps the patient wasn't monitored in a way that you would expect most clinicians to do. And also where the dosages were probably higher than what a lot of people would take. But what we kept hearing from lots of people that got in touch with us is that they could never have imagined that when if they did have a conversation with a doctor about impulsive behaviour, what that would have actually have meant. Like many men told me about hearing that their sex drive might have increased, particularly men taking these drugs in the 1670s and thinking, okay, you know. actually, I kind of, it's a bit of decline there. It might not be a bad thing. But for some of these extreme cases, that ended up being a compulsion that they just simply couldn't, they couldn't deal with, they couldn't handle. And Dave, when you were prescribed at your patch, which is also a agonist, what was the guideline? What was the warning that was given to you, if anything? You said just watch out for compulsive behaviors. Or they didn't mention it. You're impulsive or compulsive behavior, yeah. Didn't really talk long about it. He said if you're gambling it or anything like that, just get back into it, you'll stop taking it. But you get 15 minutes every year with the neurologist, you don't have time to tell you lots of things about your drugs. It was just a little brief thing. And you sort of did it with a smile on his face, you know. It's in the joke, I think, with neurologist, but it can be very sick. Tell them about Steve, Steve, for a couple of people, fit his story, because that's frightening. Yeah, I mean, Steve, the carpifeta who'd been in a lifelong relationship with his wife had never never cheated on his wife, had never used things like webcam sites. Yeah. But after taking a dopamine agonist for his Parkinson's, after a few months, because let's remember that a lot as well, part of this is that these impulsive behaviors typically don't immediately develop. They play out over a number of years. He started to get hooked on webcam sites. And in the way that many addictions develop, he then started sort of lying, covering up for where the money was coming from, tens of thousands of pounds going into this, life savings, going into this. And then suddenly his wife finds out that when she's trying to remorgage her house, that there's a load of debt and they can't do that as she'd like to. So he's confronted with his lies and their relationships over. So then he's then facing tackling his advancing condition without that stability in that relationship that he's relied on and worked so hard in his life to develop. Because if Parkinson's hadn't taken enough, you know, should we play any skip now, Dave? Yeah, it's yeah. Hundreds of pounds became thousands of pounds. Thousands became tens of thousands. Money we didn't even have. The debt quickly amounted to an excess of 50 grand. The shame became even heavier than the debt. I knew the risks as they'd been explained to me and you've somewhere rationally that dopamine agonists can cause in pulse control disorders, but that knowledge felt irrelevant and distant. And I hid what I was doing from everybody. People would ask how it was and I would lie. I was far from fine. My neurologist described it as a peculiar and uncommon side effect of the drug and explained against that again, that dopamine agonist's like repinaral can over stimulate the brain's reward circuitry. And that impulse controls disorders are a recognized, serious side effect of the drug class. That insight can disappear while behavior escalated. That was certainly the case for me. My brain chemistry changed in ways I didn't fully understand. We began to tie treat down from 16 to 20 milligrams to four milligrams of repinaral and switched over to a drug. I hadn't tried yet, so in a month, which is a different class and doesn't belong to the dopamine agonist group. I wrote to family at the time of my anguish. I'm terrified of taking this drug and so early, as it's the gold standard drug for PD, which means I don't have many options left when it eventually stocks working. The whole situation is very upsetting. As the compulsion faded, I had to face what I had had what had happened and was devastated by what I'd done. The monolid, the secrecy, the guilt was suffocating. I replayed everything on my account as times, but I couldn't have changed the outcome. I felt like a disappointment. Anyway, this cinema started to work and my Parkinson's symptoms improved in turn. I still took this drug now with no compulsive effects. And with tankins healing and over with over 10 years of hindsight, I understand now this wasn't a character flow. It was an adverse effect of my medication. This doesn't erase the consequences, but it does reframe the blame and it makes it easier to carry the rid of my actions. It doesn't magically repair trust all finances, but it matters. Fortunately, I've had the support of my family and my husband and our families. And it's been many years since it's been a problem for me. This isn't the case for everybody. It's alarming. It's still happening to some people with Parkinson's. Many who are already vulnerable. It's not a subject I particularly enjoy talking about, but it's happened and if it helps someone else feel less alone, it's definitely worth talking about. It's a really dark lonely place to be in. I would suggest to anyone going through this to speak out to a friend or family member that you trust your doctor or a counselor. Don't hold the burden alone. That's Ellie's story, very moving. She spent over £60,000 on online gaming. I mean, no matter how many of those stories you hear, I mean, that's so sad and so brave of Ellie to share that with you guys. You can tell, you can hear in her voice, you can't, the anguish. And she makes them really like key points, I think in this territory. I think lots of people who've been taking these medications have never suffered from any addiction in their lives. And we still stigmatize addictions. We think they're weakness, gambling, that kind of thing. So if you're in your 50s, 60s, 70s, you're taking a medication where you're told, compulsive gambling can happen. You don't even think, how can you possibly imagine that that's something you might develop? And you've never even had a flutter. You might bet on the national once a year. But the idea you're going to be spending £20,000 a year on Belarusian football. I mean, we heard people getting up in the middle of the night because they'd become addicted to virtual dog racing, professional, successful people who were like, right, what can I bet on? It's the middle of the night. I'm so hooked. There's a Belarusian Premier League game. Madness, things that people would never have imagined. And then you get into this world of deception and lying like we heard with her. That's awful because lots of people would be taking these medications as they've had successful lives. They've built families, they've built worlds for themselves. And then suddenly, it's almost impossible because the lack of awareness with these side effects for people not to think about them differently. And that's such a tragedy. We've heard of people in their 60s, 70s, 80s becoming gambling addicts, becoming hypersexual. And then their children, their partners thinking differently about them. It's the medication that's causing them to die in this way. It's not their fault. I think anyone listening to this might be experiencing the same. I think that's sort of key message that we want to get out there. It's not your fault. These drugs are changing your brain chemistry as Ellie was so eloquently describing there. Shall we talk about that chemistry a little bit? What is it about the agonist? What is it about dopamine? What is it about the reward system? Yeah, so this family of drugs, it's a class effect that this relationship between dopamine and agonist and impulsive behaviour is now dopamine is a, and usually it's a chemical that a lot of people will have heard of and a really important brain chemical. It's so important in coordinating smooth movements. For Parkinson's sufferers, it can be enormously effective in helping to tackle the shakes and tremors people experience. But we also know that dopamine is really key in driving feelings of motivation and reward. And it's thought that these drugs can over stimulate these feelings, leading to impulsive behaviour. And impulsive behaviour that not only makes you need short term gratification more, but also prevents you from understanding and appreciating the consequences of your behaviour. And the reason why people go onto these drugs as opposed to leveredoper initially, discussed us on this podcast many times before, is the fear. Sometimes, a slightly exaggerated fear that at some point down the line, leveredoper will stop working or you might develop side effects from leveredoper like dyskinesia, those jerky movements, which are suffering a lot from before my recent brain surgery or the on-off fluctuations, which you get Dave and I still get to a certain degree. So complications, let's call it, very real complications in a lot of cases. But because of that reluctance for people to go on to leveredoper in the first place, a lot of newly diagnosed, I'm talking about both patient and neurologist. And recent is preference going on to an agony's first to sort of try and protect themselves from that exposure to those leveredoper side effects, right? Yeah, I mean, the experts that we consulted throughout this series, they talked about these really important and tricky calculations. This is not new territory, we've known about these drugs for a long time and how they work. So these expert neurologists, Dave, you were talking about how, you know, the resources are stretched, aren't they? It's, for example, honest and it's difficult to get time with neurologists to talk about these really tricky decisions. But these are calculations that doctors are finally tuned to make, you know, appreciating that there's a kind of ecology of different drugs here that can work. But awareness is the key here. That's the sort of drive for us making this series. It's a pretty thing awareness about just quite how common these side effects can be and how they can play out for people. How common is it because some studies say one in six, some say one in three, don't they? Yeah. So one of the things that really took us by surprise going through these drug leaflets and hearing from people was that you're not actually told this. number, how common they are. So the NHS says that a very common side effect is 1 in 10, but the largest study of its kind for the relationship between impulsive behaviours and drugs or Parkinson's sufferers, just as you say Dave says 1 in 6. And some studies put it at 1 in 3, particularly for younger men demographic. So that's a very common side effect. Now it's obviously important to reflect that some cases can be extreme like the ones that we've covered, but for many people they won't be anything like that extreme and a kind of understanding that compulsive shopping, a bit of binge eating, understanding what you're going through and your family being understanding that this can be caused by the medication. That's a much better position to be in. How many people have you had reached out to after the Uarticron and your podcast series? Well, since we started reporting, we've had 350 people. 350 people that have reached out that have been directly affected. Yeah, and these are, you know, these are people like Ellie, they're not doing this on a whim. They want to belong to like a body of evidence. They want their experiences to be reflected. Some of them are in a position where they're happy to share their stories. They can talk about it, which is an enormous thing to do to talk about, you know, unpack the kind of shame of some of these behaviours and the disastrous consequences. But yeah, we've been struck that people want, they want their stories to be heard. Yeah, these are stories that are often hidden, I think. Yeah. But the cases that we've come across and you've reported on, it's not just young men, contrary to some of the research findings, right? Well, no, I mean, in the context of men and Parkinson's because there's a disproportionate relationship, we're often talking about men, but we've, when we started actually looking at restless legs syndrome, because much more prevalent in women, much more prevalent in women and there we were focusing on women's experience. And just really struck by women who would never have described themselves as having any kind of significant libido, more than normal, who ended up taking huge risks going out cruising for sex and just ended up when they finally discovered the relationship between medication and their new behaviour. That's the thing about this story. You sort of think, well, that's it then. Once you know that you're doing it, you come off the drugs, you stop it, everything's great. It's not as simple as that because while the impulsive behaviour might start, you then you're stuck with the shame of, you know, horrendous experiences. You know, we've spoken to women that were when they were cruising for sex, people with professional jobs, with stable families, ended up doing this extreme behaviour, being raped when it was happened, being physically abused, awful stories, awful stories that left them with, you know, huge mental scars afterwards. Stories of suicides, stories of imprisonment, stories of what, I don't know if it's the pharmaceutical company or the regulator describing their sexual behaviour's deviant sexual behaviour. Now what is deviant mehene? Well, deviant is a horrible word isn't it? It's an old-fashioned word and it's this sort of like, pejorative, kind of, abhorrent sexual behaviour. And it is something that isn't mentioned in the warnings. Now, we talk primarily in these leaflets about altered sexual behaviour, increased libido and also just generally harmful behaviour. What some of, what's many of the people who we spoke to you said was that they could never give them an idea about the sorts of new sexual behaviours that they developed, things like addictions to pornography, use of sex workers, they'd never had any compulsion to do before. Actually in child pornography? We've heard of those cases. Piedecilia? Yep, and I think for a lot of people they struggle to, sympathy does drop off quite immediately when you talk about and that sort of territory quite understandably. Yeah, we've heard some really extreme cases. There was also more than one case of heterosexual people that have had tend to gay experiences. Is that about that risk reward thing that they're doing something a little bit out of the ordinary for them? Well, there was a massive case in terms of media attention in France, which was just that scenario. And separate to the court case, is it? Yeah, this goes back a long time. Part of the interest in this area is that we've known for ages that the drugs can do this. And there was a big case in France about 10, longer than 10 years ago now, with a man that said that the drugs had made him change his sexuality, the relationship. So it's clear that these sexual impulses can manifest themselves in very different ways. This is what the drug regulator says. They're like, well, we can't just list every single type of sexual behavior that people develop. Curious, Dave, when you got prescribed your reticating patch, did you read, thoroughly, the least of that? You never do. You never do. You never do. Exactly. The massive thing. So you can't just tell those horrible list of things death and all this. I mean, nobody reads that stuff. But this is it. I mean, one guy who discovered his dad's, you know, spent years saying his dad's a life all apart. He said, well, you look through it. And it's, you know, Fonsix and it says weight loss, weight gain. High blood pressure, low blood pressure. Conspiracy. You think it has to happen. You're thinking, and then impulsive behaviors, but it doesn't let it doesn't say quite how common they can be. I don't think people understand what impulsive behavior is. We would think about calling this episode impulsive. But I think we decided against it because Dave, we kind of thought that people didn't really, the average person, it doesn't really understand what impulsive is. Right. Impulsive is quick to do things. Right. Planned spontaneous and compulsive need to do things often over and over again. Rich realistic. Yeah, but it doesn't expense what behavior they were talking about here. Does it? No, it doesn't do justice. Probably the saddest case you found was at a Manchester solicitor who was embezzling money from his clients. And it ruined his life. It ruined his kids life as well. Yeah. I mean, you think of the trail of disaster in this case. I mean, you've got somebody who was a successful high street, local high street. I had his name above a shop solicitor, looked after the Wilson Probe, I've loads of people in the middle of the community. So he'd have known and grown up with all these people. He was the treasure of the cricket club. He organized the Christmas lights. And this family would have walked down the high street, said hi to everyone, known everyone. And then after he was diagnosed with Parkinson's, he was put on one of these drugs. And he started taking money from these client accounts and spending it on sex workers, on webcam sites, and also bizarrely antiques. He was a history buff. And he was compulsively spending money. Clox. Clox. Yeah. So the house was full of historic clox. And that was the only sign that the family could immediately see. It wasn't, you know, behind the closed door of a bedroom. I've like, what was quite going on here? He would always been interested in in clox, but he began obsessively, compulsively buying them. So this man had spent £600,000 of clients' money before he was arrested. This was somebody that would have carried out his professional duties for years, completely dot on the eyes, crossing the teeth. To some degree, he must have understood that he was going to get found out. But as well as, you know, these dozen people having £100,000 stolen that had a disastrous effect on these families. You know, one of the old ladies who died, had had the money stolen. There was no money left to pay for a funeral for the tragedy that had been played out among his own family. You know, the shame of taking all this money meant that they were living in this small community and everyone knew very sadly, the son ended up taking his own life. The man was sent to prison, that's the solicitor. And then after coming out, he later took his own life too. So you've got a situation where a whole family is torn apart, trail of destruction in that small community. There's a very, very moving clip in your podcast series from the mother, who lost her husband, lost her son, to this behaviour caused by these drugs. This is also the case where while the guy was imprisoned, he wind himself off the agonist, is that right? You know, one of the things that's really important to mention is the, you know, if you do have concerns, obviously, you speak to a doctor, but the withdrawal, you know, this, imagine something you guys are aware of, but the withdrawal from these drugs, dangerous. Dangerous. It's dangerous. It's really dangerous. And it needs to be done, you know, overseen by a clinician. And I think the family say, amidst the horror of being arrested, he took himself off the drug, that's very, very quickly, but that's, you know, shouldn't be advised whatsoever, because it's a very dangerous thing to do. The three individuals I've known that have come forward as part of this and shared this story with us. Have all been on an agonist and all been on a heart, one of the highest doses, which I thought was 16 milligrams, but somebody pointed out there's actually a 24 milligram version of, well, at least one of the drugs, a rapinarolic in this case. Now, this is not any kind of scientific research here, but of the case that you've heard of, is that a similar pattern that you've seen, that people are on the higher dose? And just before you answer that, something you said earlier also chimed with a couple of the cases here, it wasn't until many, many months afterwards going onto this high dose, they started carrying out this behaviour. So it wasn't overnight. Yeah, exactly. I mean, you definitely write that there's a proven relationship here between higher doses and impulsive behaviour developing. And, you know, can go back to what I first found out about this. And I was quite skeptical thinking, can a drug really do that? And then we'll hang on the, they say that impulsive behaviour took years to develop. Right. Really? Does that, does that happen? But it really does. You know, people, people often also, as you were saying with, with a liver, dopa, dosages are increased because people need a higher. Unfortunately, yeah. Yeah, need a higher amount of the drug. So it can then be that they actually don't develop impulsive behaviour for a while. And it can develop so gradually that it makes it harder to spot. And crucially, what will all the families say? It makes it quite hard for them to monitor themselves. You know, it's very easy to think, well, that'll never happen to me. I've never, never bet or that kind of thing. And then, you know, like with like any impulsive behaviour that begins to develop. Yeah, the thing about concealing it and lying about it is people get better at concealing, particularly from panors and stuff. Well, you're not going to want to admit you're looking at poor knee. No. Well, any of this kind of thing. Oh, gambling or anything, no. Shopping and. Or they're, I'm in front of a doctorate, you know, you know, 15-minute appointment. Yes. Well, in one of the cases. Well, to the case actually, that we've come across is that the way it came to light was they had both requested an appointment with the neurologist without telling their partner without having their partner sat beside them in the neurology room because normally they would go as a couple. It just goes to show the embarrassment here. One thing I would say is if you're on this situation and appointments are too far between as you were saying, Dave, just reach out by phone or email, right, to a neurologist or your nurse. Well, the Parkinson's help, Lam, but she's 0808-803-033. She's a confidential help. A confidential help, like, at Lampax, at UK. Yeah. Let's ask you about the accountability here, now when we were speaking the other day and doesn't seem to be much accountability between. Well, who is a counterpart? Who can Ellie point the finger at? Is that the right term? Shoochi? Well, the thing is about this whole subject is it's, you know, we were, when we were looking at it, there's all sorts of different parties here. There's the manufacturers, there's the drug regulators who make these really tricky calculations about benefit and risk. And have continually approved these drugs. That's important to bear in mind. And then also the doctors themselves, you know, who many people say, well, they didn't warn me appropriately or warn me at all. So you've got the different parties here. And they all say, well, hang on, these drugs have been approved for decades. They're continually approved. You know, new studies come out. And the doctors say, you know, we're only warning, you know, what's approved on the, we're warning about what's approved on the leaflets. So there's a whole. Perfect storm. Well, perfect storm. But it's important to remember that, you know, these are drugs which have been extensively trialed, you know, regulators around, this isn't just in the UK, they've been approved by regulators around the world. And, you know, for these drug companies say that these side effects are clear. That if you look through the leaflets, you know, it says, it says, it says, it pulls the behavior. A lot of the 150 other things on that, yeah. And also, a lot of these clinical trials are based, well, in this case, these side effects are dependent on patients self-reporting their symptoms. And as we're sort of alluding to here, these things are embarrassing. So logically, it will be underreported, right? And if all the likes of GSK or any other pharmaceutical company are not just picking out GSK, because I'm not saying big farmer is bad necessarily here, but there's need to be something a little bit more, the phrase of, sure, and is it the absence of proof is not the proof of absence kind of thing? I think there's need to be some more research. Well, one of the things that the regular regulator said to us is about this yellow card scheme. Have you come across that? Oh, for God's sake. If somebody else mentions a yellow card scheme to me, well, we also come across that skepticism with some people, but I do think it is the mechanism at the moment. Just explain the yellow card scheme. Yeah, the yellow card scheme is the idea that if you experience a side effect, and side effects are an important, an inevitable part of any medication, aren't they? You know, like you were saying with the, with the lever doper, like we had this awful side effect of involuntary movements. So then when these dopamine agonists came along, it was great, but you know, was weird talking about today. They also have side effects, but it's by sharing this information, and this is the, this is the route that we're told to do at the yellow card scheme. You can report your experience to the NHS. So it's to the health authorities. Yes, and MHROs. Yeah, the drug regulator, that's right. Yeah, and this is, this scheme is not specific to, not specific to impulsive behaviour. It's also used to report things like if you're having a different experience or generic respiratory medication, you can use the same process. How do you do it? How do you do it? You're going to fill out form. I don't think it's a norm. You go to a website or just Google the yellow card scheme, MHROA or drug regulator. And it's, yeah, it's an online form. I can see Dave, your eyes are rolling already. You're not going to do that. No, I'm not going to do it. I'm not going to do it. No, no, no. You're just talking to me. Okay, tell us about this case in in France and what the impact of that could be. Well, yeah, this is actually, there's going to be judgment on this quite soon in March. So this is the case of this Frenchman who said that he wasn't appropriately warned, developed type sexuality, and it ruined his relationship. He also compulsively gambled tens of thousands of euros, 90,000 euros in total. And there's a judgment expected soon about whether he was or wasn't appropriately warned. And this is GSK. This is, yeah, GSK, the British pharmaceutical company in that case. There are three main manufacturers of these drugs. Go on, then. GSK, the German one. GSK, Burringa Ingleheim, who make a prime pixel, and his brand name's Mirapex, Mirapex. And then there's the drug retigating, which brand name's new pro, which Dave is demonstrating today. The patch. Not when you're going this time, right? No, no, no, no, put it down the shoulders. They could patch it, yeah. Right. And this is important because is there a case of a precedent could be set here? Well, there's, um, how does Ellie get her money back? Is Mike Westjyn here, I guess? Well, there are generally two forms of legal action that can be taken. There's a big class action. Class actions in the UK are quite hard to do. There's never been a huge one as far as we're aware relating to these drugs. There have been big class actions in Canada and Australia with different manufacturers. So class action akin to post office, right? Post office? Yeah, well, yeah, well, loads of people come on board. But all affected by the same issue. All affected by the same. Class violence is the class. What is it? Yes, exactly. Exactly. And that one, you know, car finance is quite easy to prove. Did you have to sign this contract 10 years ago? Yes, I know. But with something like this, how do you prove the damage? So in the only major group action that we've heard about in the UK, it featured four people who could develop gambling compulsions whilst on dopamine agonist. And they could, the reason that we spoke to the lawyers who worked on this case, and they said, with gambling, you can, you can show the cost. You can say, this is, this is how much money I spent. 60 grand, 30 grand. How'd you do that for a broken family or so? How would you do that for sexual, sexually impulsive behaviour use of sex workers? You know, there aren't receipts for that kind of thing. Compulsive shopping is really tricky as well. How do you differentiate between what was composed of what wasn't binge eating, the same? There's a separate kind of legal action, which is the clinical negligence case. And we spoke to people that have successfully taken clinical negligence cases. But again, these are tricky. How do you prove that in an appointment, 10 years ago, you weren't warned properly, you know, in 15-minute appointment, like Dave was talking about? Well, I was talking to your religious fellow Dan, and I was explaining that we're going to do this episode and she was saying, look, it's such a sad situation. And everyone's, well, in their world, aware of this, but they had no way to screen people. You have no way to tell who's likely to end up exhibiting this behaviour when you're prescribing it for them. So they give a generic warning or as much as possible. And your experience of everything you've researched so far, what would the best thing to do? Would it be like a warning like cigarette packets or something? Well, that was actually, there was a time in the US where major academic studies said there should be a black box warning, you know, like just as you say, like on cigarettes. But these drugs, particularly I think with Parkinson's, can be really effective. And I think something like that, the FDA-American drug regulator said, that balance of risk and benefit, it would be too far in the risk column. Because we don't want to scare people about not using these drugs. And the only thing I can say is what we've been told by these hundreds of people, which is that they didn't realise how common they were. If they were armed with that information and exactly the sorts of behaviours that impulsive and compulsive can mean, and that, you know, if you've never gambled, doesn't mean that you're not going to develop gambling. And if your family are aware of this, when you perhaps your ability to self-monitor goes away or changes, then they can spot this behaviour. So it's about awareness, really. For you, Percy, what was the most shocking case that you had of the 350 people that have come forward to you reporting this sort of behaviour? It's definitely been the families falling apart as a whole, I think. You know, the really sad stories of, you know, this case with the suicides, but also just couples that have been married for decades, right? That had children. successful lives have worked hard for everything and then to see, you know, compulsive gambling where they all this money was lost and they had to live with these really debilitating conditions, you know, on their own. And that was just for me just so sad. Freddie's case was quite moving, wasn't it? Yeah, Freddie's the case of, you know, his dad, the classic man, the teacher, sensible Simon was like, would never let his son have a credit card. Hello, the community, hello, the community. And so the idea that he would, you know, fall for this romance scam, impulsively invest, recklessly invest 300,000 pounds of their savings. And, you know, I kept saying to Freddie when we met him like, you know, this is money, this is like, you know, in this day, no, just as you're inheritance and he didn't care about the money one bit. The sad thing for him was seeing the dad that he loved this brilliant, like, dad of service, becomes someone that, you know, he was embarrassed with and he, and all those memories were being tarnished. Freddie had never been warned about the side effects. And by the time he found out about them in 2017, his dad had lost around 300,000 pounds. But the money was of total insignificance. So the pain of losing dad. Why Freddie take a moment? It's not only prescribed for Parkinson's, it rests his leg. It's quite a common thing. Yeah, exactly. These drugs are widely prescribed for restless leg syndrome. And also for other conditions. So for pituitary gland tumors. And there's a, that was the original condition. It was exactly that's that's how in the 80s, these drugs first came to the fore that they could be used for, you know, a really tricky condition. You know, there aren't, there wasn't, you know, as there was with Parkinson's with liver dope, but there weren't many other treatments. So that was a really significant development. I think just if people want to reach out and get in touch with you tell the story, is there a way they can do that? Yeah. So I've, on all my stories, I leave my email, my number, my signal contact. And, you know, for the vast majority of people, it's a message of this is what happened to me and we're not in a position to tell that story. But we are, you know, I do follow up with many people and try and find out a bit more. And in some of those cases, they have a public interest in us trying to tell the story more, more widely. So yeah. And by all means, really interested to hear from as many people that want to get in touch. Are you following up on this by way of any more articles or? Yeah. We, we're looking to see, you know, what action if any is taken by the regulator. And then also just follow up with many of the interesting cases that people have got in touch with us with. I mean, one of the things that's, um, was particularly marked is how many cases in the US where, um, these drugs are also widely prescribed. We've come across and there's been no significant media coverage there of these side effects. Talking to people I've put to the community, it's far more common than we think because, you know, I went to a year class the other day and those channels said we're doing this story and, and we've been affected and everyone's kind of a bit sheepish and a bit quiet. One guy said, yeah, I spent three and a half grand on online porn in two weeks. Just out of the blue, you know, very brave saying that, but it just happens all the time. It seems, it seems so complex. It's just part of it, it seems, you know, ridiculous. Oh, for. Oh, for. And that's why it's so great that you guys are talking about it. And the people are talking about it because if you're in that forum, then you can understand and, you know, you, you can share these stories and people can look out for it. It's easy to talk about the, the most symptoms of Parkinson's, the shakes and the speech and everything, but the non-most symptoms and things that happen to you like this. People don't talk about it. These are side effects, they're people don't talk about it just because embarrassment and, you know, you just, you just think it's part of life. You don't think it's the drugs. Well, hopefully this podcast and the link for your impulsive impulsiveness series. Impulsive, yeah. Impulsive. Bigger button. The shadow world on Radio 4. Well, give us the pitch now for your series because we're going to leave links this in our show, though. Brilliant. Yeah. So it's a 10-part podcast series that you can find just by googling BBC impulsive that was played out on Radio 4 for 10 days. And it's part of this series called Shadow World that looks to lift the lid on on perhaps stories which are spoken about as much as they could be. Well, we leave a lot of links, but this one click on it because it's an amazing series, right? There's short 10-12 minute episodes and it really does bring this to life. Congratulations for doing it because it's shone lighting at a dark corner that we needed to lightshone it, you know. Thanks so much. Thanks so much guys. Thanks for having me on. Cheers. Thanks. Thanks to Noof for coming to see us. Incredible stories. Some really sad stories there. Suicides and people get to prison because of, like, me and Agnes, it's frightening. You know, people are losing everything, right? They're health, they're family, they're well-lives. I feel like after this episode we're going to get a few people reaching out and showing their similar stories, right? Partly objective here. People are saying Barrett's to talk about it. People will be hiding away and maybe hopefully this program will help people come out in the open and talk to friends and family about it. Of course, you can always ring the carcassist UK Helpline, 0808, 800-0303. You've got problems like this and you want to talk about it. Great place to start. Or you can drop them a line. Hello at parkinsonzonorg.uk and the dependency questions are there. And the Helpline is confidential. So don't worry, you can speak to him in private and they are very, very good. They're trained professionals and there's a lot of information in the park that's UK site that's been written or co-written with people that have been affected by this side effect. Side effect doesn't sound like the right phrase, doesn't it? There's no justice. But people that have experiences have been involved in how we should better support people that are going through this now. So feel free to consume that information. You're not alone in this sort of stuff, right? Talk to neurologists as well, you know, about kissing back on that. Exactly. And they are used to it. So unfortunately you won't be the first and you won't be the last either. So don't keep it hidden. Just something to be aware of. We've had a way with parkinsonz UK about it as well. Have a look into it and we'll do it. We've raised this issue with our friends at parkinsonz UK and CEO Caroline Russell has agreed to listen and take action here as well because I think there was a recognition that you know just having a passive approach is not really working. She's promised to take action which is very good news. So we'll keep you posted on that. Can we again lie in the mood Dave somehow by showcasing some amazing people doing amazing things? Let's do that. We're having that little guitar hero Glenn Tipton has donated 230 000 pounds to the Imperial College London. The cash was raised from merchandise from the Judas Priest to Judas Priest is a bandy plays guitar in. The plan is to use the cash to research focus also on brain surgery for treatment of tremor and other symptoms of Parkinson's. Good man. We're going to have an episode of focus ultrasound coming up very soon as well. So keep tuned for that. Glenn says there's another quarter million in the pipeline as well which is good news. People with Parkinson's cure amazing things. Christine Bullen wants to shout out for speaking as Parkinson's UK events in front of 250 people. I've so enjoyed your podcast funny and inspirational. I hold you totally responsible for the act of madness. Well done, Christine. Good luck with that. House off to Leicester Murphy. He's been showcasing his own skills on Facebook. He can now road 200 metres in 40.7 seconds on his concept too. We could do it in just 22 strokes after loads of training. I feel a bit of a competition coming up between parties here. Can you be less than 22 strokes? Right, is that good? 40.7 so I don't know, I do cure but it sounds good doesn't it? Well done Leicester, well done. And finally, former Watford England under 21 bus, AD Boothroiders diagnosed four years ago as making a return to football. He's got some big player coach for the England Walking Football team and a match against the team of MPs in London. Good man, AD. And it's getting the boost back on. We're going to go, we're going to go, we're going to go, yeah, record a few bits. We're going to take our microphones with us and get a few clips for the show as well so stay tuned. Good look, AD. Good luck, good luck all taking part and peace as well. Yeah, we're going to kick it. Right, we'll see you next time. Cheers, see you next time, bye. You've been listening to Two Parkies and a Pod. A Parkinson's podcast with Dave and Kua to get in touch, visit the website to parkiesandapod.com or send your voice notes or emails to hello at Two Parkies and a Pod.com. [Music]