The Miracle | The Walkers Ep4

The Observer Moth, I have to tell you this, this is so important. I've been researching CBD, looking for the answer to why you were so well when we were walking and why you're deteriorating so quickly now. It's the summer of 2015 in Rayna Wins second book The Wild Silence. The couple are living in the Cornish coastal town of Polruun and Moth's been studying Horticulture at University, but the sedentary lifestyle means his health is getting worse. The neurological condition he has means his memories going and he's losing weight and limping. In desperation, Rayna starts digging into medical papers, trying to understand why Moth's health was so much better when they took their massive walk along the southwest coastal path the previous year. I showed him the research and made him read about patients without simers who had undergone endurance training and had miraculously regained some cognitive abilities, which doctors had believed were lost forever. Don't you see, that's what the path was for us, extreme endurance training. We were walking miles every day carrying heavy weights on a really restricted diet. It's the same thing. Moth has CBD, not Alzheimer's, but both illnesses involve a buildup of protein in the brain, so Rayna thinks this study must be relevant. Then she tells Moth about another paper that shows that plants release chemicals that have a positive effect on humans. Sure, if this proves it, proves what I've always believed. We need the plants, the land, the natural world, we actually physically need it. I'm convinced it's part of the answer to why your health was so much better while you were walking. It has to be. The salt path isn't just a memoir about a difficult time in Moth and Rainer's lives. It's about how grit and perseverance coupled with true love and nature is a recipe that revives the dying Moth in a way that modern medicine can't. It's about a secular miracle. These are Rayna Wins books, but in many ways it's Moth story. Yet Moth is largely absent from all the publicity. Rainer's headlined so many literary festivals, been on dozens of chat show sofas and countless podcasts, and Moth has only done a handful of media appearances. Of course, that's understandable given his terminal neurodegenerative illness. But when he does appear in public, he's not camera shy. He's very is on Channel 5 at Hay Farm, talking about why most cider apples aren't good to eat. It's very dry, very, very bitter. I love the American term for cider apple trees, and that they're spitters. And forgive me, it really is unpleasant. Elsewhere, he's appeared on the red carpet with Jason Isaacs and beamed into the one show with his own video message for the actor who played him in the Hollywood movie of his life. Jason, I just wanted to say what a pleasure it has been meeting you and an absolute honour to see you portray me. Be of all people. Thank you. It's not up to Jason's standard, is it? There's also this video I found online before I release my investigation. It was made by a charity called the PSPA that represents people with CBD. This whole CBD journey started with just an aching shoulder. I thought I'd just pulled an awesome. I didn't realise at the time that I was also gaining a limp. It affects every moment of my waking day. It feels like somebody's moved into my body. It's a presence if I dare call it that. It's very cold. It's so tiring. The salt path has been read by millions of people. Millions more have watched the film. That's a lot of people being told that if you're dying and you simply try hard enough, if you're prepared to push beyond what you think you can endure, and if you really connect with nature, then you can cure the incurable. The film and books were watched and read by people who've been diagnosed with CBD and those who've nursed loved ones as they died. I believe it. I want you to believe it. Maybe, just maybe. I need to sort up my game and fight it. There was just one problem with that. Do medical miracles happen? No. I'm Chloe Hajimuthau. I'm from Tortoise Investigates and the Observer. You're listening to The Walkers. The Real Salt Path. Episode 4. The Miracle. I've always loved walking. I don't drive. I never have done. If we're going to talk about walkers, well, John Todd's a walker. And so walking was my sort of, I'm not going to get anywhere, and I found that I was having pains in my legs. Or rather, he used to be a walker. These days, he walks very slowly with the help of a stick. Watching him, it's hard to see the man he once was, but I've been chatting to him for months, and I've got to know a warm, witty man with a dry sense of humour. I first visited him at his home near Aldershot last summer, and this time round, several months later, I can see a difference. He's more hesitant when we speak, and he takes the longer to find the words he wants to say. Just so you know, we've decided to edit his answers slightly for brevity. So, a few years back, through the haze of lockdown, he wasn't feeling well. Even after he'd recovered from COVID, something just wasn't quite right. I started to have balanced problems, and I don't mean just when I came home from the pub, I mean, sort of, there were times where I would just build what I'm steady on my feet. I had a lot of problems in my left hand, which I didn't really understand why I hadn't injured it. I was struggling to make a fist or just inflexible. The doctor guessed he must have hurt it somehow. I thought it would be a physical type problem, so physiotherapy on the hand was there. They arranged for me. But it didn't help. He was continuing to deteriorate. I had an hour look at it, I had a scan. I was told eventually that it was Parkinson's. For most people, finding out you have Parkinson's would be pretty devastating. But John's quite a stoic guy. A few years before all this, he actually discovered he has autism, which really helped explain why he hasn't always found things easy. As I've always struggled with living, dying held no fears for me, it just didn't, and it still doesn't. I sort of live with the fact that I had Parkinson's for about a year or so. But John was continuing to get worse. The medication wasn't working. At which point I thought I'll go back to the specialist. Eventually, I was sort of referred to a neurological specialist, Dr. James Grantwick. So he said to us that I've got to tell you that you haven't got Parkinson's. That was obviously an enormous relief. Bridget and I were sort of smile and sort of made it sort of quite clear that we were pleased with that revelation. And Dr. Grantwick sort of cut our celebrations, if you like, sort. He told them that what John has is much worse than Parkinson's. Actually, I'll let John's doctor explain. It's unfortunately a rare condition, often mistaken for Parkinson's disease early on, and one which carries a worse problem. It was of course a shock to him, I remember that. It's never nice having to give this diagnosis to anybody. John had corticobasal degeneration or CBD for short. The same condition Moth was diagnosed within the salt path. It's rare, it only affects roughly one in 100,000 people and it's fatal. John's doctor, Dr. Grapwick, is one of the UK's top specialists in CBD. He's a doctor who referred to him when, like John, doctors can't work out what else might be wrong with them. Even so, in his 20-odd years of practice, he's probably only seen around 30 people with the condition. He says most neurologists might only encounter one or two cases in their entire career. What's interesting is when Dr. Grapwick has to break the news about CBD to someone like John. He doesn't use euphemisms or try and soften the blow. He's incredibly direct. He explained that it was an incurable condition. There was no medication and I think it did give me an idea of life expectancy. I'm afraid that the life expectancy for corticobasal syndrome is around five years to eight years. I remember at one point I said, "So this is going to kill me then?" And he said, "Oh no." He said, "I'm kidding." "Excuse me, I don't know how I'm a bit dense at times, but why have I got a life expectancy if it's not going to kill me?" He said, "The most likely cause of death would be something like choking on, because you'll lose the ability to swallow." Or pneumonia. Eventually the loss of the swelling will become like that and then you can't swallow. And those two elements, that one you can't feed. So it also becomes questions about do we need to place feeding tubes here, there's stomach to feed people. But even around that, if there's difficulty swallowing your own saliva, then you can swallow quite easily into your lungs. If that does happen, it can very quickly lead to pneumonia. And that is the primary cause of death, usually in cortic basin syndrome. It's a tragically fast and cruel disease. All things considered John took the news pretty well. I'll be honest. I was, a lot of me was actually relieved that I had a reason for what was going on. Even so, Dr. Grapwick was unequivocal with him about the inevitability of what was in store for him. And this is how certain it was. He said, "Look, it always takes the same route. Like it normally starts with a hand." He said, "Then it will be," I think he said, "it will be a leg goes to the right hand and then the left leg. It's sort of same order apparently." I remember him saying that it's pointless trying to fight it and he said, "You just need to accept that this is going to happen. It's happening on every case that he'd observed." Then later that summer, John's wife Bridget was listening to the radio when she heard Rainer Win being interviewed. And she heard her talk about the fact that her husband Morph has the same rare condition as John. So she ran out and bought the salt path. She didn't much like the book, but a few weeks later John picked it up. When I sort of read this book where this guy seems to be doing all kinds of incredible feats of endurance and any mental health improve, everything had improved. And I was astonished. I thought, "Well, you know, how marvelous." I think that actually the picture may not be as painted to me. Maybe, yeah, I think I maybe Dr. Grantwick. Maybe he did get it wrong, I thought, "I guess I didn't know what to believe anymore." Back in the world of Rainer Win's books, it's 2019, and Moth's been getting gradually sicker and sicker. The sedentary lifestyle in Cornwall is hurting him. But then that summer the couple planned a walking holiday in Iceland. And before long, Rainer's struggling to keep up with him. In a cold wind blowing salt-raiden air from the sea, no doubt remained. No drugs or doctors could help Moth, but he didn't need them. Simply by living as he was built to, his body had found a way to sidestep with failures and go on. Moth was surviving by returning to a more natural state of existence. But when the walks over, they can't sustain his health. It's the same pattern being repeated in all her books. Moth's ill, they walk, he recovers. He keeps yo-yoing in and out of wellness. And then in her third book, she becomes even more categorical about the medical miracle. Landlines opens on Moth in crisis. They've been living on hay farm and his health's worse than ever. He's falling over and suffering in continents. They go to the doctor and it's bad news. Moth's scan showed that he has a distinct reduction in his receptor cells, which show up as light's on the screen. His lights were undoubtedly going out. Since walking the coast path doctors, physiotherapists and neurologists have contacted us, suggesting reasons why his health improved as it did. So it could be argued that what Moth and talk on that very long walk was an extreme form of physio. Or maybe it was a very low calorie diet we survived on because we couldn't afford to eat. All the time spent in nature or any number of other reasons got to be yet to be considered. What was without question was the speed with which his health deteriorated when he returned to a more sedentary life. All the old symptoms returning more aggressively than before. Rainers love for him won't allow her to accept his inevitable death. She persuades him to go on one last hike. This time from Scotland all the way down to Cornwall. It's their toughest walk yet. But it's worth it because when they visit the doctor again and have another brain scan they get a totally different picture. What we're seeing are two sets of results. The old dad scan showing an abnormal reading and this the new one showing a normal reading. This time round there's no sign of CBD in his brain. It's been reversed. Rainer acknowledges that this seems miraculous. Neurocusticity exists. Although we know very little about it we used to think the earth was flat. We used to think no universe existed beyond our own. One day there'll be answers for questions as yet unasked. When I first reported this story last summer I kind of acknowledged that medical miracles do sometimes happen. So could this be a medical miracle? So you would find a cosmic basal syndrome? Yes, if you had that the appearance is the colors if you like on those scans would be reduced. On a screen in a clinic in central London there are slides showing cross sections of brains. In each hemisphere a colon of purple light where the dopamine receptors are. Dr. Grappwick points and describes how these colons get smaller and dimmer as the disease progresses. So in these conditions as we said then they're not treatable not reversible. So any reduction in levels of dopamine or glucose in the brain which is what those kinds of scans pick up you would not expect to see it improve. We don't need to have a gradually get dinner. So it's not possible to have a brain scan showing the brain closing down and then six months later for that to have been reversed and to then see that patient have a normal brain scan. So early not in in cosmic basal syndrome. In 2023 on a poster advertising all three of Rainer Wins books Penguin her publisher had written "Some people live to walk, Rainer and Moth walk to live." It's confusing. In her books Rainer is telling us he's better but then Moth appears in videos like the one for the PSPA charity in which he's describing how difficult life is with his condition. C.B.D. is a very lonely existence terminal condition no cure nobody gets it. This video appeared on the PSPA website alongside videos of two other C.B.D. sufferers who were diagnosed more recently than Moth but who are obviously extremely disabled. One appears wheelchair bound and unable to speak. The other struggles to articulate and walks with the aid of two sticks. The real sad thing is that although I feel as I'm still mentally still sharpened with it, I now know that's not the case. Moths seated in an armchair by a window, he's wearing a jumper and his signature cravat. But then he gets up, puts on and zips up his jacket, and then kneels down to tie his laces before striding out the door. You have to concentrate on everything. It's seen the sad scene, raise face, some days. The PSPA have now taken down this video and cut ties with Moth and Rainer because they said there were too many unanswered questions raised by my investigation. To be told you have a terminal condition, but there's no treatment for it, and there is definitely no cure that was solved. How does what you see in this video correspond to your experience of treating patients with this condition? Well, it's certainly not at all consistent with patients I've seen with Cauticabasal Syndrome or CBD for that matter to be clear. One thing that's often very prominent is loss of facial expression, and this is excellent facial expression. I mean there's absolutely no problem with movement of his face at all. Furthermore there's a good dexterity in the leg on the right. There's a little bit of problems I can see with the dexterity in the right hand, but it's still able to do up shoe laces, which is certainly at 18 years. I've never seen a patient with CBS be able to have the dexterity to do that. So I must say from what you showed me of this video, this does not particularly to me look like somebody with Cauticabasal Syndrome. Last summer I published the fact that nine neurologists who specialize in the condition had told me they didn't believe the disease could be reversed, and that none of them had any experience of a patient with CBD surviving for 18 years. A couple of days later, Rayna Winn responded by publishing a long blog post on her website. The suggestion that Moth has made up his illness is utterly vile, unfair and false. I have never sought to offer medical advice in my books, or suggest that walking might be some sort of miracle cure for CBS. I'm simply charting my own personal journey and battle with his illness and what has helped him. My books have become a record of his health. Through the movement issues, to the times on our very long walks, when those symptoms have improved, the effect of the suggestion that Moth has made up this condition has been absolutely traumatising for him. Suggestions made by people who do not know him have never met him and have never seen his medical records, but even worse is the effect on those sufferers who have looked to Moth as a beacon of hope. The hope that maybe not now, maybe not for them, but at some point in the future, we might find some answers to this condition that has no treatment and no cure. And she published three doctors letters. The first letters dated 2015, that's two years after Rayna and Moth say Moth was diagnosed. One letter runs through his medical history, suggesting that all his previous tests have come back negative. Interestingly, there's mention of Moth's horticulture degree, but no mention of any long-distance walking, something I imagine might be medically relevant to a patient with severe symptoms. But that letter does mention corticobasal degeneration. It also talks about paroxysmal symptoms, abnormal posturing on the left of the hemibody and bradicinesia. I needed to get a translation. So what's the effect we said here is I don't know what's going on. That's really what's being said. He's not giving him a diagnosis of corticobasal syndrome. No, it's really saying I'm not sure what the cause of these symptoms is. It is saying the closest thing I could think of would be corticobasal syndrome. But then the end of the list of these effects are very mild. There's acknowledging the fact that the time course of the symptoms, how long they've been present, he should be much, much more effective by this point if it were corticobasal syndrome. So the longest person that survived from diagnosis that I have treated is eight or nine years. And were they quite disabled by the end of that period? Very much so. So the patient towards really from I think their stick-theor to their eighth year, they were wheelchair bounds. They were unable to walk, they had no meaning for ability to move the lower limbs. Would it be possible to do a medical trial where you could get patients to exert themselves physically in the way that Moths did in the salt path to see if it could have a potential positive effect on the condition? Ethically, I don't think that we would ever pass an ethics board. As we said, if you were attempting to get patients with a severe debilitating progressive neurological condition to try and perform physical feats which are clearly going to be beyond their capability on an ethical basis, that's not ethical. They would suffer. And so you you couldn't rather trial on that basis. So there's nothing that will ever improve corticobasal syndrome. It's not a treatable condition, it's certainly not curable or reversible in any way shape or form. No, it is dangerous to with a condition which is as severe as this promote an idea that strenuous exercise could reverse or cure it. On two grounds really, one because it won't and if anything, it'll be detrimental to the patient's health to attempt to do so and they will suffer from it. But secondly, as well, it will have a huge psychological impact upon them. And it can make a patient feel that they have in some way that they are responsible for their condition and for its worsening, it's because they have not done enough. And that would be wrong because it is no fault of the patient's whatsoever. Over the last six months, lots of people have written to me to tell me about their experiences with CBD. One woman told me that as she read my article in the Observer questioning Moths' condition, relief washed over her. Because for years after reading the salt path, she wondered whether she could have kept her sick mother alive longer if she'd forced her to walk the coastal path. Even though she knew deep down that her mother who had CBD could never have done it. I used to walk the falls and I've what I said, one of the my favourite walks was the South West Coastal Path, which is they now seem to call the salt path. Chris, please be, was diagnosed with CBD in 2022. He's gone from being an avid hiker to struggling to get to the end of his garden. I mean, I guess for you, it was so obvious that it couldn't be true. Oh, gosh, yeah. Oh, gosh, yeah. Blinding you. As far as they're walking, swimming, I can't swim anymore, I haven't got the coordination. I was a good swimmer, but why if I could do my laces more if I could do a button? But for Chris, this illness isn't a fate he has to passively accept. I'm fighting back, somewhat more so I said, towel disease is a bit like a storm in your brain. But there are measures you can take that will, you could put sunbugs up against the storm in your brain. You know what I mean? I'm putting sunbugs in place against the storm. He's cut out all refined carbohydrates from his diet. And I've already had a benefit from my sleeping pattern. If you sleep well, you're reducing the jerkiness, you're reducing the fat, the seat in the CBD has already gone. It's not going to go away, it's still going to be progressing, being on a farce sort of fence against it. And he's taken up Sudoku and a new language. And I've learned in Norwegian now. It's not about curing CBD. Chris knows nothing can help him do that. It's about improving and giving himself the best quality of life possible. Was he tempted to walk off his CBD? I couldn't pull on the rocks like I walked the end of this house. It's impossible. Yeah, you'd be cruel. Give them false hope. given false hope is cruel. Hope. That's what lots of people bought into with the soap path and it's something largely missing from the world today. If you're reading for pleasure or watching a film, it's understandable to want to walk away with a bit of positivity. But if you're sick and you have limited time left, false hope doesn't give. It only takes. I had no hope. Then just for a fleeting few days I had hope. I was angry when I didn't think I was, but I was. I knew it in a way. I thought, no, actually this is not right. John's told me he's been through a whole spectrum of emotions. I believed it. I wanted to believe it. Sometimes if you're desperate, I'm talking about really desperate. You're desperate to believe something. You will. You'll try to. Reading the soap path, it had seemed simple. He just had to push through the pain and exhaustion and try harder. Had you not published your story, then yeah, there's a severe danger that there'll be a lot of people out there who grasp this sort of, this sudden salvation sort of thing that, oh, you're going to be all right, you know? And there's going to be a lot of people bitterly let down and relatives and, I'm sure it's, it is a horrible, really cruel thing to do. John might not be scared of dying, but he and Bridget obviously wished they had more time left. At least now he knows the truth. He also knows how precious times become for him. I'm glad I know, you know, and I can start trying to put a few things in order and we had a lot of staff to do. So could Rainer, Win and Morth have just dreamt this whole thing up? Well, it's likely to be more complicated than that. Those doctors letters published by Rainer Win on her blog had the name of the neurologist blacked out, but I had my suspicions about who it might be. I managed to track him down and talk to him and he just so happens to be from Palfelli, the Welsh town where Rainer and Morth lived before they lost their house. I don't know if and how well he knew the couple before Morth arrived in his clinic. We spoke in general terms because he's bound by Dr Patient Confidentiality, but it's important to say he's not a specialist in corticobasal degeneration. He told me he hasn't read all of Rainer Win's books, and when I explained the details of Morth's recoveries, he said that wasn't something he could endorse. He was pretty clear that he had never come across anyone who has reversed the symptoms of CBD or even halted the disease's progress. In the end, I can't definitively say whether Morth has CBD or not because I haven't seen his medical records. They're private and for good reason. It's a very uncomfortable and intrusive thing picking apart someone's health like this, and I wouldn't be doing it if Morth and Rainer hadn't already made the details of his illness public, and if I didn't feel that there was an important public interest reason for setting the record straight. All I can say is that his symptoms, the passage of his illness and the length of time he's had it, as well as the claims that he's reversed it, do not tally with what the CBD specialist in the UK that I've spoken to tell me they've witnessed among their patients. One thing suggested to me by several neurologists is that Morth might have functional neurological disorder. That's essentially a catch all phrase for the fact that some neurological symptoms don't have a physical cause. They might be brought on by stress or other issues in a person's life, but they can't be attributed to the brain. Some estimates say that up to a third of outpatients that turn up in clinics are diagnosed with this. So has his doctor given Morth a proper diagnosis of CBD? Not in the letters that Rainer's published, but it's difficult to know what a doctor says to a patient in private, so it's possible that at some point Morth may have believed he had CBD. Was he told he didn't have long to live as Rainer tells us in her books? Unlikely. Did he get two brain scans in a period of a year, one showing his brain closing down with CBD and the other post-hike showing a normal brain? If it did happen, would you expect that doctor to be excited and to want to publish about it? Oh, absolutely. I mean, if I had some of the aquatic basal syndrome and I thought of something I'd done or the patient had done, then I effectively changed its progression or reversed it. I'd be very excited. I mean, I want to publish it and more than that would be quite important to publish it. You haven't seen anyone publish anything about somebody with corticobasal syndrome suddenly reversing the condition? No, I've not. I've not seen anything published. Would you have seen it if it had been published? If that had been published, I'm pretty sure I would have seen it, yeah. My investigation felt like it might be nearing a conclusion. Rainer and Morth hadn't lost their house as they claimed. The couple hadn't walked the coastal path as Rainer described in her books and Morth didn't seem to be dying and then yo-yoing back to health. The salt path and its sequels weren't the unflinchingly honest books their publishers claimed they were. Rainer win had stretched the truth to breaking point. End of story, right? But just then, another message popped up on social media. The people behind the salt path books are not who you think they are. The real people, Sally and Tim Walker, my uncle and aunt, are pathological liars who have left a trail of destruction behind them. Coming up in episode 5. If you just see a nice, such a nice woman, you know, just a country girl who liked to walk, I don't think any of us are a minuttle. I've been waiting for the story to come out hoping it would come out every year, because I thought I had no proof. I don't think they had any idea that she could have- she could have been capable of something like that. Rainer win responded to the observer's investigation with the following statement. The salt path lays bare the physical and spiritual journey Moth and I shared, an experience that transformed us completely and altered the course of our lives. This is the true story of our journey. On her website, Rainer goes on to say, "Moth was diagnosed with CBD. This is a fact. I'm simply charting Moth's own personal journey and battle with his illness and what has helped him. My books have become a record of his health, through the movement issues to the times on our very long walks when those symptoms have improved. The effect of the suggestion that Moth has made up this condition has been absolutely traumatising for him. Suggestions made by people who do not know him have never met him and have never seen his medical records." Thanks for listening to The Walkers, The Real Salt Path. It was reported by me, Chloe Hajimathoe, with additional reporting by James Urkart. The series producer was Matt Russell, series artwork by Lola Williams. Music supervision was by Carla Patella, and the sound design was by Rowan Bishop. The editor was Jasper Corbett. Thank you for listening to The Walkers. We hope you're enjoying the podcast so far. 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