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71 minutes | Aug 20, 2017
A Ballet Master’s Balancing Act to Fight Parkinson’s
Could ballet master Alexander Tressor mobilize exercise, diet and stress reduction to keep his Parkinson’s-related pain and other symptoms at bay? Ten years after his diagnosis, here’s how his DIY protocol is playing out. When Alexander Tressor was 47 and living in Manhattan, a neurologist gave him what Tressor stoically calls “The Bad News.” A Russian-born ballet master, Tressor says hearing the word “Parkinson’s” was like getting hit by a lightning bolt. Then hearing “No cure . . . ” was like getting hit again. But Tressor is a resilient kind of guy. And an optimist. So he set about figuring out how he could sidestep the worst of what Parkinson’s could throw at him. And he wanted to do it without going on the usual cocktail of meds. He learned exercise and diet were game-changers with this disease. Would it be possible for him to take the self-discipline and insights he gained from ballet and use them to thwart the progression of Parkinson’s? “The biggest lesson is that you can overcome a lot of stuff if you’re disciplined. You’ve got to develop the necessary habit of working harder to beat this thing than how hard Parkinson’s is working to beat you.” But wait. Why is a chronic-pain podcast covering a movement disease best known for causing hand tremors and an impaired gait? Well, the big news is that doctors are starting to realize that pain and Parkinson’s are often paired together. In fact, some studies show 80 percent of Parkinson’s patients have chronic pain. And many of Tressor’s strategies are worth considering no matter what kind of pain you have. So back to the ballet master: For 10 years, Tressor ramped up the self-discipline he’d lived by his whole life. He ran daily. He restricted his diet. He lost 25 pounds. He trimmed four inches from his waist. He rescued a puppy, essentially signing himself up for a decade and a half of dog-walking. He made short films to feed his soul. All the while, he continued to teach ballet. But the most profound move of his life didn’t happen on a theater stage. It happened when he drew upon his optimism, self-discipline and in-depth knowledge of the human body to create a health regimen designed to slow down the pace of his disease. Fast forward to today. Now 58, Tressor lives in a small town in South Carolina, where he still teaches ballet. Amazingly, a decade after The Bad News, he’s got Good News to share: He remains largely asymptomatic! He credits his daily stretching with keeping his pain down to the level of ache and discomfort. And he recently launched an online program called Parkinson’s on the Move to share the exercises, diet, recipes and stress-reduction strategies that have kept him well. We talked with Tressor about how seeing two chimps on treadmills convinced him of the powerful therapeutic benefit of exercise; why he believes self-discipline, ultimately, will win the game against his medical challenge; and why he thinks everybody should leap at all that life has to offer. (He himself just got engaged!) Today, Tressor talks about: • How a misdiagnosis led to surgery on a perfectly healthy shoulder and the painful “nightmare” rehab that followed • Why he just said no to taking a cocktail of Parkinson’s meds for years—and how he figured out that exercise, diet and stress reduction could keep his symptoms at bay • How the unplanned adoption of a rescue puppy led to big physical and psychological gains • Why this ballet master and maker of short films believes that doing anything creative is more therapeutic than any medication • How to live with Parkinson’s without it dominating you • Why, if you’re suffering from chronic pain, you shouldn’t put your life on hold • Why he started Parkinson’s on the Move • Why, if given the option, he wouldn’t trade in his Parkinson’s diagnosis Interviewee: • Alexander Tressor is a ballet master and the founder of Parkinson’s on the Move. He has lived with Parkinson’s for 10 years and has kept many debilitating symptoms at bay with daily exercise, diet and stress reduction. Watch him do this 24-minute sample workout to see the kinds of exercises and stretches that keep him fit. He also makes short films infused with his offbeat sense of humor. Check out “Shaken, Not Stirred,” a five-minute documentary about living with Parkinson’s, and “How to Wash a Schnauzer.” And, as promised in the podcast, here is my favorite short of his: Watch Tressor’s Moving Performance in “Patriotic Parkinson’s Dance” LET’S GET PHYSICAL: If you need evidence that exercise slows down the pace of Parkinson’s, Alexander Tressor is Exhibit A. (Source: Alexander Tressor) Straight from the lab: • This jaw-dropping, three-minute video called “Is Exercise the Answer?” inspired Tressor to start running 20 minutes a day shortly after his diagnosis—and to keep running every day for the next seven years! The clip takes you to a lab at the University of Pittsburgh. There, scientists use two chimpanzees injected with a Parkinson’s-like toxin to test the impact of exercise on Parkinson’s. One chimp, The Runner, walks on a treadmill; the other one, The Watcher, essentially uses the treadmill as a recliner. After three months, brain scans on the primates show that exercise has protected the The Runner’s brain against damage. This footage is excerpted from “My Father, My Brother, and Me,” an hour-long FRONTLINE documentary that appeared on PBS in 2009. The show looked in depth at one family’s battle with Parkinson’s. • This 2017 systematic review article evaluates 11 studies on the effectiveness of physical activity on depressive symptoms in Parkinson’s. Some 342 patients doing 17 different physical activity programs were included in the research. The authors concluded that physical activity—especially aerobic training—can decrease depression and significantly improve the quality of life for Parkinson’s sufferers. • This 2012 New England Journal of Medicine article shows that tai chi may improve balance and prevent falls among people with mild to moderate Parkinson’s disease. A group of 195 male and female Parkinson’s sufferers were randomly assigned to work out twice a week doing either tai chi, strength-building exercises or stretching. Half a year later, the tai chi practitioners’ balance was four times better than the stretching group. • This 2012 Harvard Health Letter stresses that exercise during the early stages of Parkinson’s may slow the pace of the disease and offers six tips for working out to minimize injury and maximize the effectiveness of the exercise. • This 2011 Neurology journal article by noted Parkinson’s and exercise researcher J. Eric Ahlskog, Ph.D., M.D., concludes that vigorous exercise should have a central place in the treatment of Parkinson’s. For more information: • The Michael J. Fox Foundation is the largest nonprofit funder of Parkinson’s research in the world. The website offers everything from webinars to podcasts to research updates. The foundation’s online clinical trial matching tool called Fox Trial Finder has helped 30,000 people register for 300 Parkinson’s clinical trials worldwide. • Professional cyclist and Olympic medalist Davis Phinney started the nonprofit Davis Phinney Foundation for Parkinson’s four years after he was diagnosed with young-onset Parkinson’s when he was 40. With the goal of helping people with Parkinson’s live well, the foundation publishes a blog, has a free exercise video you can download, webinars, and 39 free worksheets for tracking such things as your daily exercise and medications, as well as checklists on topics like how to improve your gait, balance and lessen freezing in place. • The National Parkinson Foundation has a toll-free helpline, a blog and podcasts. It also funds the largest clinical research study of Parkinson’s (10,000 patients in four countries), organizes events to raise funds and awareness for Parkinson’s and has free educational materials, such as this page that details the benefits of physical exercise for Parkinson’s patients. Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.
21 minutes | Aug 13, 2017
How Not to Get Gouged at the Pharmacy: GoodRx
Are you paying too much for your prescription meds? GoodRx can keep you from being overcharged at your pharmacy counter. Different pharmacies charge different prices for the same drugs. And the money you’re throwing away can be huge! And don’t think I’m comparing the prices at a mom-and-pop pharmacy in one state with a drug store inside a Big Box retailer in another state. I’m talking about the handful of pharmacies within miles of where you live. You may be out big money every month simply because you instructed your doctor’s staff to send your prescription to one pharmacy rather than another. “GoodRx takes away the time suck of having to touch base with seven different pharmacies to get their prices for your meds. Because who’s got the time for that? Nobody!” You probably comparison-shop for food and household supplies like paper towels and bath tissue, but when the receptionist at your doctor’s office asks for your “preferred pharmacy,” you may automatically name the pharmacy closest to your home or office. But here’s the thing: The pharmacy that is most conveniently located to you may not be the one that sells your prescription meds at the cheapest price. How much money could be slipping through your fingers? Well, the average American’s annual prescription drug tab is $1,370. Now if you have insurance, you may only end up paying about $185 of that. But what if your insurance company moves one of your meds onto a no-pay list? Or what if you lack health insurance and don’t realize you’re overpaying by hundreds of dollars a month? Or what if a drug manufacturer astronomically spikes the price of a prescription medication you’ve been on for years? (I’m talking about you, asthma inhaler manufacturer!) One way to get a second opinion on whether you’re paying the lowest price for your meds is to do a little due diligence at GoodRx. This website and app collects prices and discounts from more than 60,000 U.S. pharmacies and has millions of users each month. You type in the specific medication you’d like to price and your zip code, and GoodRx’s rundown of the going rate at different pharmacies around town answers questions you didn’t even know you had. Like, is it cheaper to get your prescription filled at Costco or at the independent pharmacy down the street? Can you bring down the price of the meds if you increase the quantity of pills in the vial? What if you pay with cash? And why is GoodRx giving you a coupon that can cut your cost by 80 percent? What’s in it for them? Today, we let you know how well GoodRx works based on three criteria: • Is it effective? • Is it easy to use? • Is it inexpensive? And we wrap up the episode by revealing the Painopolis rating we give GoodRx based on its usefulness, user-friendliness and cost. If you never again want to get stuck paying for prescription drugs that have tripled in cost in a month at your go-to pharmacy, this episode is for you. For more information: • This 2017 Newsweek article explains the wacky way that prescription drugs get priced. The interviewee is a now-independent advisor who spent 15 years helping drug companies price their medications. The bottomline: Nobody pays a drug’s list price—not drug wholesalers, not insurance companies, not physicians—so why should you? • This 2016 Consumer Reports article reveals that drugs can cost as much as 10 times more at one pharmacy than another. And among participants in a poll the magazine conducted, when hit with price spikes on their meds, only 17 percent shopped around for a better deal. The piece also offers nine strategies for finding the best prescription drug prices. • A chronic asthma sufferer gets curious about why his insurance company is now paying $4,000 a year for his newly prescribed maintenance inhaler in this 2016 Undark.org article that delves into why the cost of asthma inhalers has skyrocketed during the last three decades. Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.
35 minutes | Aug 6, 2017
How To Become a Guinea Pig: Using ClinicalTrials.gov
When none of the standard treatments relieve your chronic pain, should you try an experimental approach by volunteering for a clinical trial? And if so, how? It’s an all-too-common scenario: You’ve seen a slew of doctors who’ve prescribed countless treatments to erase your pain. Nevertheless, it persists. So what now? “There are scientists right this minute trying to get to the bottom of whatever your medical disorder is. And they’re coming up with new experimental treatments. If you sign up for a clinical trial, you’re able to get access to experimental treatments way before you otherwise would.” If the available treatments haven’t worked, maybe some unavailable ones might. And by unavailable, I mean treatments so new that they’re still working their way through the gauntlet of scientific testing that determines whether they’re safe and effective. Research scientists refer to those tests as clinical trials. The entire multi-stage evaluation process can take a decade or more to complete. In the meantime, the only way you can try one of those experimental treatments is by volunteering to be a test subject in a clinical trial. Yeah, a human guinea pig. But there’s a catch: Experimental treatments pose potential health risks (including, in rare cases, death) as well as potential benefits. And because experimental treatments are so new, nobody really knows what those possible risks and benefits might be. What’s more, most experimental treatments never make it out of the lab because they simply don’t work; or in some instances, they do more harm than good. But on the flip side, some newly invented treatments prove to be major breakthroughs. So by participating in a clinical trial, you can get access to an experimental treatment long before you otherwise would. If the word experimental gives you the creeps, you’re right to be cautious. Nonetheless, keep in mind that every medication you currently take was once experimental. And likewise, many experimental treatments now undergoing scientific scrutiny will one day earn a place in your physician’s quiver of treatment options. At this very moment, hundreds of thousands of clinical trials are taking place around the globe. Hence, you can bet that scientists somewhere in the world are recruiting volunteers right now in hopes of coming up with new and improved treatments for your particular type of pain. But how do you locate a clinical trial near you that’s focusing on your specific health problem? How do you find the eligibility requirements for acceptance into a clinical trial? What questions should you ask when deciding whether to be a test subject? And how do you actually sign up for a clinical trial? In this episode, we tell you about an online tool named ClinicalTrials.gov that promises to give you those answers. Moreover, we let you know how well ClinicalTrials.gov works based on three criteria: • Is it effective? • Is it easy to use? • Is it inexpensive? We also dig into the potential benefits and drawbacks of volunteering for a clinical trial. In addition, we’ll talk you through the different types of clinical trials and tell you which ones are more likely to involve experimental treatments that may actually pan out. We then wrap up the episode by revealing the Painopolis rating we give ClinicalTrials.gov based on its usefulness, user-friendliness and cost. By the way, ClinicalTrials.gov is loaded with lots of technological bells and whistles that can easily confound first-time users. So after you’ve listened to our review, check out our free ClinicalTrials.gov video tutorial below. Watch our ClinicalTrials.gov demo: EASIER THAN IT LOOKS: Give us 32 minutes, and we’ll take you on a tour of ClinicalTrials.gov. Update: The U.S. National Library of Medicine is in the process of revamping ClinicalTrials.gov. Consequently, the newest version will differ in some ways from how ClinicalTrials.gov looks and performs in this video tutorial. Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.
104 minutes | Jul 30, 2017
A Ketamine Coma Was Her Last Resort: RSD/CRPS
Her medical career halted by chronic pain, Shannon Stocker chose a high-risk procedure involving a powerful anesthetic, a five-day coma, and a do-or-die medical-tourism journey to Mexico. Shannon Stocker was 30 years old and in her last year of medical school when she first felt the pain. It started in her right arm and eventually became so debilitating that this newly minted M.D. was forced to put her medical career on permanent hold. “I had nothing left to lose. Either I was going to wake up better, or I wasn’t going to wake up. And either scenario was better than the one that I was in.” Over time, the pain spread throughout her body and felt as if she’d been doused with gasoline and set on fire. Even ordinary sensations—raindrops on her skin, a gentle hug—became unbearably excruciating. Woundlike ulcers and fiery discolorations riddled her skin. After seven years of suffering, she found herself relying on a wheelchair and continuing to spiral downward. Some doctors predicted she’d be dead within two years. The cause of her horrifying symptoms was a neurological disorder called reflex sympathetic dystrophy, or RSD. Many doctors also refer to it as complex regional pain syndrome, or CRPS. Why RSD/CRPS strikes some people but not others is a mystery. Typically, it’s sparked by an injury that inexplicably throws the body’s nervous system into chaos. This disease then unleashes pain so severe that RSD/CRPS outranks every other medical condition on the McGill pain scale, including cancer pain and amputation. After exhausting all other treatment options, she decided to gamble on a high-risk medical procedure called ketamine-coma therapy, previously administered to only a few dozen people worldwide. To undergo the procedure, she’d need to travel to a hospital in Monterrey, Mexico, because the FDA hasn’t approved ketamine-coma therapy for use in the U.S. Given the procedure’s experimental status, riskiness and five-figure cost, no physician in the U.S. even offers it. In Mexico, her doctor would use massive doses of ketamine—a drug best known as a horse tranquilizer and as a powerful hallucinogen often sold on the street as “Special K”—to put Stocker into a coma lasting five days. Just as you might turn a glitchy computer off and then turn it back on again to make it work properly, Stocker hoped that the ketamine coma would likewise reboot her nervous system and thereby dial down the pain. But during those five days, ketamine also would unleash hallucinations so fearsome that she’d need to be tied to her hospital bed to keep from thrashing around and hurting herself. Going into it, she knew that the treatment and related expenses would cost $40,000. But despite some promising research data, the treatment came with no guarantee that it would work—or that she’d even survive it. Today, nine years after she awakened from the ketamine coma, we talk to Stocker about why someone trained as a physician would seek out a treatment that American doctors don’t even perform; how she stayed hopeful during those many years of agony; what lessons this doctor-turned-pain-patient learned about navigating the healthcare system that the rest of us in chronic pain need to hear; and lastly, how she’s doing now. (Quick hint: she’s given birth to two children since the coma!) Today, Stocker talks about: • Why she saw more than 30 doctors before finally receiving an accurate diagnosis—and why it came not from a physician but from her non-doctor husband Greg, a salesperson who exhaustively researched her symptoms and advocated on her behalf • Why physicians often act dismissively toward people with chronic pain—and how patients should respond • Why she signed up for an experimental medical procedure so risky that she might not survive it—but was unfazed by that risk • What it was like to travel outside the U.S. for treatment • How a supportive family member can play an indispensable role in helping a person in pain hang on to hope • What she does nowadays to keep her pain in check—and how she thwarts occasional flare-ups Interviewee: Shannon Stocker is a mom and writer who writes books for children. In September 2017, her writing will be published in Chicken Soup for the Soul: Dreams and the Unexplainable. And in 2019, Sleeping Bear Press will publish her first picture book. She also publishes a blog and other nonfiction that explore a variety of topics, including her battle with chronic pain. She and Greg kept a day-by-day blog detailing her experience of undergoing ketamine-coma therapy in Mexico. In addition, she’s on the board of directors of the International Research Foundation for RSD/CRPS. Stocker’s Ketamine-Coma Transformation: At first glance, the women in the two videos below appear to be two different people. The first video shows a pain-wracked invalid. The second shows a vibrant singer performing in front of an audience. In fact, they’re both videos of Stocker—the first taken shortly before she underwent ketamine-coma therapy; the second taken seven years later. It’s hard to imagine a more vivid example of what can happen when someone in chronic pain latches on to an effective treatment. In her case, ketamine didn’t just trigger an improvement. It triggered an astounding transformation. To see the change for yourself, click on the “before-ketamine” video (“Part 1: Pre-coma Evaluation”) and “after-ketamine” video (“Part 3: Dr. Stocker ‘Live’”) below: Shannon Stocker, shortly before undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.) Shannon Stocker, seven years after undergoing ketamine-coma therapy. (Source: Anthony Kirkpatrick, M.D., Ph.D.) Straight from the lab: Just how strong is the evidence that ketamine can reduce the pain of RSD/CRPS? And what other treatments might help relieve it? Scientists have been asking those same questions. Explore this sampling of their research to date on ketamine and other options: • This 2015 systematic review article evaluates 45 studies and case reports involving the use of ketamine to treat RSD/CRPS. • This 2014 review article evaluates the quality of the published research involving the use of ketamine to treat RSD/CRPS, along with providing an overview of how ketamine has been used historically, both medically and illicitly. • This 2014 review article evaluates the benefits and risks of using ketamine in the treatment of chronic pain, explains the neurochemical changes that can produce neuropathic pain, and suggests how ketamine may interact with those changes to reduce pain. • This 2013 review article draws upon hundreds of published studies to discuss the merits of various treatment options and to identify key indicators for diagnosing RSD/CRPS. • This 2013 Cochrane Library systematic review article compiles data from 19 earlier review articles involving randomized clinical trials to assess various RSD/CRPS treatment options. • This 2008 German open-label Phase II clinical trial (20 individuals with RSD/CRPS were treated with ketamine-coma therapy and tracked for six months) reports significant pain relief and improved quality of life. • This 2007 study involving nine American patients with RSD/CRPS who underwent ketamine-coma therapy in Germany found that the procedure significantly reduced their pain without causing any adverse cognitive effects when measured six weeks post-coma. For more information: • The RSD/CRPS Treatment Center and Research Institute and the International Research Foundation for RSD/CRPS, based in Tampa, Fla. Both were established by Anthony Kirkpatrick, M.D., Ph.D., a physician who treated Stocker on an outpatient basis in Tampa and who also coordinated her treatment in Mexico. • The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) • The National Institute of Neurological Disorders and Stroke’s “Complex Regional Pain Syndrome Fact Sheet” Update: According to Dr. Kirkpatrick, no medical institutions in the United States, Mexico or elsewhere are currently performing ketamine coma therapy on a routine basis. Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.
20 minutes | Jul 16, 2017
Does Your Doctor Work for You or Big Pharma? Dollars for Docs
Has your doctor accepted payments and perks from drug and medical-device makers? Dollars for Docs can give you the answer. Every time you seek treatment for your chronic pain, you rightly expect to have your doctor’s undivided attention in the examining room. You also expect one other thing: your doctor’s undivided loyalty. After all, you’re the one picking up the tab, so your doctor should have no hidden incentives to do anything other than recommend the best possible care tailored to your particular needs. “As a patient, I should know if my doctor is loyal to me, or if there are divided loyalties. But on the front of the doctor’s door, there’s no sign that says, ‘Full disclosure: We take money from these pharmaceutical companies, and here’s how much we’re getting.’” The fact is, however, you may not be your doctor’s only cash stream. In the U.S., many pharmaceutical and medical-device manufacturers have struck up financial relationships with doctors as a way for those companies to promote their products. The exact dollar amount that physicians receive from these companies varies widely. On the low end of the compensation scale, drug reps might pick up the cost of doctors’ lunches in exchange for a few minutes of their time. On the high end, pharmaceutical and medical-device companies may hire doctors to work as consultants, cover doctors’ costs to attend medical conferences, or pay doctors to give speeches. For some physicians, these transactions are incredibly lucrative, totaling hundreds of thousands of dollars or more per year. For other physicians, the outlay amounts to a free sandwich, if that. Not all physicians in the U.S. accept payments and perks from pharmaceutical and/or medical-device manufacturers, though most do. Granted, there’s nothing illegal about these financial relationships. Nor do the payments and gifts necessarily mean that the quality of care you receive will be compromised. Nonetheless, various studies indicate that doctors who obtain these sorts of payments and perks prescribe pricier brand-name drugs in greater proportion than their peers who haven’t received any remuneration. The larger the payments, the likelier doctors are on average to prescribe brand-name drugs over cheaper generics. And for many patients, there’s an undeniable ick factor to the notion that their doctor might be recommending medications or medical devices made by companies from which the doctor has benefitted financially. For that reason alone, you deserve to know about these payments in order to be fully informed when choosing your healthcare team and making healthcare decisions. Until relatively recently, however, patients had no way of finding out whether their doctors had any financial ties to drug and device makers. Understandably, a lot of patients would be extremely hesitant to broach the topic with their doctor for fear of sounding accusatory and souring the relationship. Fortunately, the 2010 Affordable Care Act, a.k.a. Obamacare, has saved you the trouble. That law requires pharmaceutical and medical-device companies to provide the federal government with information about any gifts or payments made to physicians and other types of healthcare professionals. What’s more, ProPublica, a nonprofit investigative journalism organization, has compiled that ocean of data into an online research tool called Dollars for Docs. It contains information about payments made to more than 800,000 physicians. With just a few keystrokes, Dollars for Docs can tell you whether your doctor (or any other doctor in the U.S. that you’re curious about) has taken money or gifts from drug and medical-device companies; what the monetary value of those payments and perks was; which companies provided them; and for what reason. Dollars for Docs can also provide similar financial data about your dentist, optometrist, chiropractor, and podiatrist. In this episode, we let you know how well Dollars for Docs works based on three criteria: • Is it effective? • Is it easy to use? • Is it inexpensive? And we wrap up the episode by revealing the Painopolis rating we give Dollars for Docs based on its usefulness, user-friendliness and cost. By the way, the U.S. government also runs a website that offers information about the financial relationships that U.S. doctors have with drug and device makers. It’s called OpenPaymentsData.CMS.gov. In this episode, Painopolis decided to focus on Dollars for Docs, which we found to be a bit more user-friendly. If you’ve wondered whether your doctor has financial ties with Big Pharma, this episode is for you. Update: Dollars for Docs has expanded to include payments that doctors received from drug and medical-device makers in 2015. When compared to 2014 data, this more recent information indicates that the overall amount paid to doctors by those companies is holding steady. Dollars for Docs also now includes information about payments made to U.S. teaching hospitals. Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.
100 minutes | Jul 9, 2017
Uncle Sam Is His Dealer: Medical Marijuana
Meet the chronic-pain patient who talked the feds into supplying him with free, legal medical marijuana for the last 34 years. You’ve probably heard about our guest today, maybe not by name but certainly by way of urban legend. The story goes like this: In Mississippi, the U.S. government has been growing marijuana for decades and giving the crop for free to a small, select group of Americans suffering from chronic pain and other serious medical conditions. And it’s all perfectly legal. According to this urban legend, these recipients could walk up to the door of the nearest DEA office, light up a joint made from government-provided weed, and not get arrested. What’s more, anywhere in the U.S. that it’s legal to smoke a cigarette, it’s legal for these people to smoke marijuana. “The cop comes up to me and says, ‘My God, you reek of marijuana!’ I said, ‘I know. I just smoked two joints coming here. I’ve got a prescription for it.’” Well, the story’s not just an urban legend. And today, we talk to one of those recipients, Irvin Rosenfeld. He’s a 63-year-old Florida stockbroker who’s received free U.S.-government-approved marijuana for more than three decades. He uses it to treat chronic pain caused by congenital bone tumors that conventional drugs failed to alleviate. That’s right: the same federal government that locks up thousands of people for using marijuana has also been doling out marijuana to Rosenfeld. We chat with him about how he persuaded the feds to stop bogarting the pot; what the rest of us with chronic pain can learn from his decades-long reliance on medical marijuana; and what happened the day he lit up one of his legal joints at Disneyworld. Today, Rosenfeld talks about: • How he went from being the Nancy “Just Say No” Reagan of his high school to discovering that marijuana drastically reduced his severe chronic pain • Why marijuana surpasses prescription painkillers at controlling his pain and allowing him to live a full, active life that includes sailing and playing softball • How he uses marijuana on a daily basis to rein in his severe chronic pain • How he pulled off the nearly impossible feat of persuading the U.S. government to provide him with a legal, lifetime supply of medical marijuana • What the same amount of pot would have cost him if he’d bought in on the streets instead of getting it free from the federal government • Why this successful stockbroker’s clients are happy to trust their investments with a guy who smokes 10 joints a day • The Kafkaesque craziness that can happen when he smokes marijuana in public and can’t convince local police that he’s toking legally Interviewee: Irvin Rosenfeld has experienced pain from congenital bone tumors since he was a boy. He works as a stockbroker. In addition, he’s a board member of Patients Out of Time, a nonprofit organization that advocates for the legalization of medical marijuana as a legitimate medicine. He’s also a director and co-founder of The Silver Tour, a campaign to educate older people about the medicinal benefits of marijuana and encourage them to vote for its legalization. He recounts his experiences in his riveting autobiography, My Medicine: How I Convinced the U.S. Government to Provide My Marijuana and Helped Launch a National Movement. Straight from the lab: Wondering if medical marijuana might be an effective treatment for chronic pain? Scientists have been asking that same question. Explore this sampling of their research to date: • The Missoula Chronic Clinical Cannabis Use Study investigated marijuana’s long-term effect on Irvin Rosenfeld and three other people receiving legal marijuana through the U.S. government’s Compassionate Investigational New Drug Program. • This systematic review of 79 randomized controlled trials studied marijuana as a possible treatment for chronic pain from a variety of causes, including cancer pain, fibromyalgia, multiple sclerosis-related spasticity, diabetic neuropathy, HIV-associated sensory neuropathy, chemotherapy-induced pain. This review also explored marijuana’s effect on chemotherapy-related nausea and vomiting, HIV-related wasting syndrome and sleep disorders. • This review of 28 randomized clinical trials analyzed marijuana’s effect on chronic pain, neuropathic pain and multiple sclerosis-related spasticity. • This double-blind, placebo-controlled crossover study gauged marijuana’s ability to ease neuropathic pain. • This systematic review of 18 randomized trials analyzed marijuana’s pain-relieving effect on noncancer pain, including neuropathic pain, fibromyalgia, rheumatoid arthritis and mixed chronic pain. • This prospective trial investigated marijuana’s ability to reduce symptoms of Crohn’s disease. • This randomized controlled trial tested whether smoking marijuana helped people reduce the severity of their neuropathic pain and get a better night’s sleep. • This review article analyzed the effect of marijuana and other alternative treatments on the symptoms of multiple sclerosis and other serious ailments. • This meta-analysis of five randomized controlled trials explored the effectiveness of inhaled marijuana at easing neuropathic pain. • This review article investigated the effectiveness of various forms of marijuana and other types of alternative therapy at relieving multiple-sclerosis-related symptoms. Music: Our theme song is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.
96 minutes | Jul 2, 2017
Can a Plant-Based Diet Beat Ulcerative Colitis?
By switching from the pharmacy to the produce section, 32-year-old Gabrielle Fennimore hoped to tame her worsening ulcerative colitis. But did it work? By now, we’ve all heard that eating a plant-based diet protects against cardiovascular disease. But can you eat your way to better health if your medical problem is chronic pain? And if so, which diet could accomplish that, and how quickly? And could it do so even more effectively than prescription drugs? “The pain was coming all the time. The bathroom was becoming more frequent—20 or 30 times a day. So I decided, ‘All right, let’s go the route of diet and see what we can do.’” In June 2016, 32-year-old dental hygienist Gabrielle Fennimore decided to find out. She’d suffered for years with ulcerative colitis, an autoimmune disease that attacks the colon and triggers severe abdominal pain and bloody diarrhea. She took anti-inflammatory medications in hopes of controlling those symptoms, but the pain kept getting worse. And the bloody diarrhea did, too, forcing her to make as many as 30 trips a day to the bathroom. Then last summer, she took the gutsy step of flying from her home on the east coast to attend a 10-day dietary program in California run by internist John McDougall. Here’s what you need to know about McDougall: he’s all about eating exclusively starches, vegetables and fruit. That means no meat, no dairy, no eggs, no cooking oils, and no junk food. In other words, goodbye, typical American diet! Unlike Fennimore’s physician back home who championed medications instead of diet to control her ulcerative colitis, McDougall argues just the opposite. He claims that eating low on the food chain can fend off the plague of chronic ailments targeting countries that follow a Western-style diet. Those diet-related diseases, he says, include the obvious ones: clogged arteries and diabetes, for starters. But he also insists that our Western way of eating puts us at greater risk for certain cancers (including breast, colon and prostate cancer) as well as autoimmune diseases like multiple sclerosis, rheumatoid arthritis, Crohn’s disease and ulcerative colitis. In fact, those diseases are rare in parts of the world where people eat primarily grains, vegetables and fruit. Moreover, McDougall contends that a plant-based diet can promote healing in people who already have those diseases. Other researchers have also linked the Western diet with an upswing in various chronic diseases. For Crohn’s disease and ulcerative colitis, however, the scientific research to date has been inconsistent in nailing down that cause-and-effect relationship and pinpointing which specific elements within the Western diet might be most to blame. So McDougall’s approach sounds promising in theory. But when you put a plant-based diet to the test in the real world, can it actually reduce chronic pain and other symptoms enough to make a difference? Well, it’s now been the better part of a year since Fennimore took McDougall’s advice. And it hasn’t been easy. Her colon was already so fragile that for the first few weeks she subsisted only on pureed squash soup. And because of that hyper-spartan menu, her weight quickly dropped to an emaciated-looking 88 pounds. Despite those challenges, she stuck with it. And today, eight months after she opted for a plant-based diet and weaned herself off medications, we find out if her symptoms have improved; how she weathered the trial-and-error ordeal of figuring out which foods to include on her grocery list; why that list is still limited to just 15 items; and lastly, how hard it’s been for this self-confessed foodie to give up fine dining in favor of a menu that’s heavy on squash, rice, and purple sweet potatoes. Today, Fennimore talks about: • The emotional shock of waking up after a colonoscopy as a 21-year-old and being told that she had inflammatory bowel disease • Why she tried a powerful immunosuppressant medication recommended by her doctor—but stopped taking it after only five days • How she managed to work full-time despite needing to use the bathroom as many as 30 times a day • Why she decided to stop taking the prescription medications recommended by her doctor back home • Why she went to the trouble and expense of traveling cross-country to learn about plant-based eating from a leading expert rather than adopting the diet on her own • Why she stuck with a plant-based diet even though her symptoms initially failed to respond • Her method of identifying which foods help control her ulcerative colitis—and which foods are likely to ignite a flare-up Interviewee: Gabrielle Fennimore has experienced digestive issues since she was a girl. She works as a dental hygienist. Straight from the lab: Wondering if a plant-based diet might help ward off inflammatory bowel disease and other ailments? Scientists have been asking that same question. Explore this sampling of their research to date: • This 2016 review article published in the World Journal of Gastrointestinal Pharmacology and Therapeutics finds that a high-fat, low-fiber, Western diet is strongly associated with an increased incidence of inflammatory bowel disease, while vegetables, fruit, and omega-3 offer a protective effect. • This 2016 review article by Austrian researchers cites epidemiological evidence indicating an increased risk of inflammatory bowel diseases among people who eat fast food at least twice a week or follow a Western-style diet that emphasizes meat, animal fat, refined sugar, and foods high in omega-6 fatty acids (found in red meat and certain types of cooking oils and margarine). Other data cited in this study suggest that some strains of probiotics may be helpful in managing ulcerative colitis and pouchitis. The data also indicate that the risk of pediatric inflammatory bowel disease—particularly Crohn’s disease—appears lower among children whose diets include plenty of vegetables, fruits, nuts, grains, fish, and olive oil. • Drawing upon data from human and animal studies, this 2016 French study adds fuel to the theory that the high-fat, high-sugar Western diet may promote inflammation within the digestive tract and increase the risk of inflammatory bowel disease. • In this 2014 study by John McDougall, patients who followed his plant-based diet for just seven days experienced measurable improvements in a variety of important biomarkers—including blood pressure, blood glucose, cholesterol levels, and body weight—despite many of those individuals simultaneously discontinuing their prescription medications. • This 2015 review article explores the rationale and scientific evidence behind several other types of diets used by people to control their inflammatory bowel disease, including the Specific Carbohydrate Diet, the low-FODMAP Diet, the Anti-Inflammatory Diet, and the Paleo Diet. • This video report by NutritionFacts.org gives a quick overview of studies investigating the anti-inflammatory properties of various foods, with purple potatoes providing an especially potent anti-inflammatory benefit. For more information: • The Starch Solution by John A. McDougall, M.D., and Mary McDougall provides a readable, easy-to-follow guide to the plant-based diet he recommends for preventing and treating a variety of chronic diseases. • In Dr. McDougall’s Digestive Tune-Up, McDougall makes the case that a plant-based diet can help fend off and treat a wide assortment of digestive-tract-related diseases, including Crohn’s disease, ulcerative colitis, diverticulosis, celiac disease, constipation, and gallstones. • The McDougall 10-Day Live-In Program is held multiple times a year in Santa Rosa, Calif., at the Flamingo Conference Resort and Spa. • Also in Santa Rosa, Calif., TrueNorth Health Center offers live-in accommodations and an integrative-medicine approach to treating autoimmune diseases, diabetes, hypertension, and many other health disorders. Photo Credit: This episode’s featured image, a circa-1930 photograph entitled “Danforth Fruit Store,” is from the City of Toronto Archives (Fonds 1244, Item 339). Music: Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on Apple Podcasts. We’d be forever grateful.
20 minutes | Jun 25, 2017
This Health Coach Won’t Take No For an Answer: MyFitnessPal
Fallen short of your diet and exercise goals and feel lousy because of it? Meet MyFitnessPal, an online personal trainer that’ll keep you on track. Is your doctor urging you to lose weight, limit your sodium, get more active, and make other lifestyle changes that push your willpower to the breaking point? “What I like about MyFitnessPal is, everybody says you need someone to be your Accountability Buddy, but it’s great when you can be your own Accountability Buddy.” Today, we tell you about an online tool named MyFitnessPal that takes the drudgery out of adopting new health habits. Like a dietitian, MyFitnessPal adds up the calories and nutritional content of everything you eat. Like a coach, it tallies the energy you burn from exercising. The calories-expended-per-activity database includes everything from ice fishing in a sitting position (136 calories per hour for a 150-pound woman) to Tai Chi (272 calories) to chopping wood (422 calories) to jogging in place (544 calories). And like the Ghost of Fitness Yet to Come, MyFitnessPal predicts your future weight and the date the New You will appear, based on your current regimen. If that forecast doesn’t startle you into sticking with it, nothing will. We let you know how well MyFitnessPal works based on three criteria: • Is it effective? • Is it easy to use? • Is it inexpensive? We then reveal the Painopolis rating we give MyFitnessPal based on its usefulness, user-friendliness and cost. If you believe—as we do—that you sometimes need new tools to break old habits, this episode is for you. Music: • Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.
79 minutes | Jun 18, 2017
Pelvic Pain Demands a Rewrite
Previously on Painopolis, editor and health journalist David Sharp described his descent into chronic pelvic pain syndrome and recounted his early reliance on a urologist who misdiagnosed the cause of Sharp’s pain for years. The urologist treated him with a drug that failed to quell his pain and would later be taken off the market for causing an increased risk of strokes. Then, on an internet forum, Sharp heard about a clinic in California that had an intriguing though unorthodox new approach for treating pelvic pain, but hadn’t yet published any results on its methods. Today, our intrepid journalist makes the painful trip to California to attend that clinic—painful because he’s in excruciating pain when he’s sitting. What’s more, he knows full well that yet another urologist plus a physical therapist will not only be looking under his hood, so to speak, but sticking their fingers . . . up his tailpipe, too. The trip also represents a big gamble, because if the clinic’s approach fails to work, he’s got no plan B. “There’s nothing like excruciating pain for getting you to change your life.” Sharp wraps up his chronic-pain story with specifics about how he’s doing today. He also reveals the strategies he now uses to rein in his pelvic pain. Thanks to these strategies, he’s gone from being nearly bedridden to living a full life. In this episode, Sharp talks in-depth about: • The key components of the six-day pelvic-pain clinic he attended • How he learned a type of meditation called “paradoxical relaxation” that, with practice, allowed him to downshift the tension in his body so his muscles could heal • Trigger-point therapy—what it felt like to undergo the finger-in-the-rectum sessions and how, over time, the therapy deactivated his muscle tension • How his turbulent childhood led him unknowingly to equate muscle tension with safety • How psychotherapy helped him work through childhood trauma and gain a new way of dealing with pelvic pain—and with life • How he successfully overcame the panic attacks that began a few months after he started practicing meditation, the cornerstone of his treatment regimen • Why you need a support team to help you deal with chronic pain—and who to keep off your support team • The top six things he does on a daily basis to reduce his pain. Hear a snippet now: Interviewee: • David Sharp is a journalist and founding editor of Painopolis. Pelvic pain overview: • Chronic pelvic pain syndrome strikes males and females. Here are the symptoms associated with the disorder. Resources: • National Center for Pelvic Pain Research • Prostatitis-CPPS-Interstitial Cystitis Forum is a popular forum where people with pelvic pain share insights, encouragement and treatment experiences. • A Headache in the Pelvis by David Wise, Ph.D., and Rodney Anderson, M.D. • Paradoxical Relaxation by David Wise, Ph.D. • The Trigger Point Therapy Workbook by Claire Davies and Amber Davies • The Long Run by Matt Long with Charles Butler The Wise-Anderson Protocol: • Here are the components of the Wise-Anderson Protocol. • These studies document the effectiveness of the protocol in treating chronic pelvic pain syndrome. • Developers of the protocol discuss their pelvic-pain treatment in this video. Updates: When Sharp attended the National Center for Pelvic Pain Research’s (NCPPR) six-day pelvic-pain clinic in 2004, it was physically impossible for patients (other than maybe those who were carnival contortionists) to perform internal trigger-point therapy on themselves, given the unreachable location of the trigger points. Since then, the NCPPR has created an FDA-approved wandlike device that allows patients to self-administer trigger-point therapy. Also, the NCPRR now treats women as well as men. Music: • Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.
51 minutes | Jun 12, 2017
Our Anus Horribilis: Pelvic Pain
Today, Painopolis editor David Sharp outs himself as a chronic-pain sufferer, talks about the 20 years he spent in the Land of the Misdiagnosed, and recalls the unforgettable day his ass spontaneously imploded. “When you’re in terrible pain, doing nothing is not an option. It’s like, ‘I can’t just lay here and hope the pain goes away by itself.’” Plagued for years by intermittent pelvic pain that his doctors wrongly diagnosed as mere prostatitis, Sharp learns the hard way that he’s actually got chronic pelvic pain syndrome. It’s a muscle-tension disorder that he likens to, at its worst, being impaled on a spear. But he’s not all doomsday about his diagnosis. Rather than let it derail his life, he’s figured out ways to deal with it. Before he turns the microphone on fellow pain sufferers, he thought it only fair to share his own pain story. Sharp talks in-depth about: • The frightening moment when his pelvic pain went from mere discomfort to DEFCON 1 • How he got stuck in a “see the doctor/take antibiotics/get better/get worse” loop . . . for 20 years • How a pelvic-pain internet forum led him to discover the health card he really got dealt. Hear a snippet: • His unrelenting search for strategies and tools to relieve his pain • His “I’m an experiment of one” attitude toward trying new treatments • His decision to travel to an out-of-state pelvic-pain clinic with an unconventional protocol • Seeking his wife’s help with his life-altering condition • How he “rebooted” his body after sleeplessness and anxiety hit In next week’s episode, he describes his long, strange journey from being nearly bedridden to resuming a normal life. Interviewee: • David Sharp is a founding editor of Painopolis. Pelvic pain overview: • Chronic pelvic pain syndrome strikes males and females. (So much for it being the same thing as prostatitis.) Here are the symptoms associated with the disorder. Resources: • National Center for Pelvic Pain Research • Prostatitis-CPPS-Interstitial Cystitis Forum is a popular forum where people with pelvic pain share insights, encouragement and treatment experiences. • A Headache in the Pelvis by David Wise, Ph.D., and Rodney Anderson, M.D. • Paradoxical Relaxation by David Wise, Ph.D. • The Trigger Point Therapy Workbook by Claire Davies and Amber Davies • The Long Run by Matt Long with Charles Butler The Wise-Anderson Protocol: • Here are the components of the Wise-Anderson Protocol. • These studies measure the effectiveness of the protocol in treating chronic pelvic pain syndrome. • The developers of the protocol discuss their pelvic-pain treatment in this video. Music: • Our theme music is “Gentle Storm,” composed and performed by Betsy Tinney (betsytinney.com). Wish other people in chronic pain knew about Painopolis? To help spread the word, please post a review about Painopolis on iTunes. We’d be forever grateful.
22 minutes | Jun 5, 2017
It’s Like Google on Steroids: PubMed
Still using the big kahuna of search engines to answer crucial medical questions? That’s because you haven’t tried PubMed.gov.
74 minutes | May 29, 2017
JFK: A Profile in Chronic Back Pain
The biggest secret of John F. Kennedy’s presidency wasn’t his sex life. It was his crippling chronic pain and his covert ways of treating it.
2 minutes | May 12, 2017
Painopolis Podcast Coming Soon!
We’ll bring you stories about people who confronted chronic pain, surmounted it, and are now ready to tell the rest of us how they did it. Prepare to be riveted.
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