Welcome to Painopolis, the podcast for people with chronic pain. We bring you stories about people who confronted the worst hell imaginable, surmounted it, and are now ready to tell the rest of us how they did it. You’ve never heard stories like these. Stories straight from the trenches, brought to you by seasoned journalists who’ve made chronic pain their full-time beat. Prepare to be riveted. Painopolis. Relentlessly in search of what works, one defiant story at a time. Visit us at painopolis.com.
A Ballet Master’s Balancing Act to Fight Parkinson’s
Alexander Tressor was 47 and living in Manhattan when a neurologist gave him what he 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 that 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 in his battle against Parkinson’s?
Now 58, Tressor remains largely asymptomatic! He credits his daily stretching with keeping his pain down to the level of ache and discomfort.
Today, we talk with Tressor about his decade-long medical challenge, how he figured out the exercise, diet and stress-reduction regimen that’s successfully kept most of the disease’s symptoms at bay, and how he’s learned to live with Parkinson’s without it dominating him.
Check out this episode’s show notes at https://painopolis.com/exercise-diet-parkinsons/ for links to Tressor’s films and a sample workout. We’ve also included links to compelling research about the benefits of exercise for people with Parkinson’s.
How Not to Get Gouged at the Pharmacy: GoodRx
Review: Different pharmacies charge different prices for the same drugs. And the money you’re throwing away can be HUGE!
How much money could be slipping through your fingers? Well, the average American’s annual prescription drug tab is $1,370. 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 on to a no-pay list? Or what if you don’t have health insurance and you don’t realize you’re overpaying hundreds of dollars a month for the meds you need to keep your chronic health condition under control? Or what if a drug maker astronomically spikes the price of a prescription medication you’ve been on for years? (Yeah, I’m talking about YOU, asthma inhaler manufacturer!)
GoodRx collects prices and discounts from more than 60,000 U.S. pharmacies and has millions of users each month. This website lets you type in the name of your medication, select your dosage and quantity of tablets, type in your zip code, click on a FIND THE LOWEST PRICE button, and compare three different prices for the drug—a cash price, a club price and a GoodRx coupon price—at different pharmacies near you.
Today, we let you know how well GoodRx works based on three criteria:
• Is it effective?
• Is it easy to use?
• Is it inexpensive?
After listening to this episode, be sure to check out our show notes at https://painopolis.com/painopolis-reviews-goodrx/. You’ll find a link to GoodRx, plus more information to help you find the best prescription drug prices around.
How To Become a Guinea Pig: Using ClinicalTrials.gov
Review: 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?
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. That evaluation process can take a decade or more to complete. In the meantime, the only way you can gain access to one of these experimental treatments is by participating 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. On the other hand, keep in mind that every medication you currently take was once an experimental medication. 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 a new and improved treatment 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, watch our free half-hour-long video tutorial on how to use ClinicalTrials.gov. You can find that tutorial in the show notes for this episode at https://painopolis.com/painopolis-reviews-clinicaltrialsgov/
A Ketamine Coma Was Her Last Resort: RSD/CRPS
Shannon Stocker was 30 years old and in her last year of medical school when she first felt the pain. It started in her arm and eventually spread throughout her body. The pain became so intense that this newly minted M.D. was forced to put her medical career on permanent hold.
The cause of her suffering was a disorder called reflex sympathetic dystrophy, or RSD. (It’s also called complex regional pain syndrome, or CRPS.)
After exhausting other treatment options, she gambled on a high-risk, experimental procedure called ketamine-coma therapy, which would render her unconscious for FIVE DAYS. To undergo it, 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 cost, no physician in the U.S. even offers it.
Today, we talk with Stocker about her long ordeal with RSD/CRPS, the experimental procedure she bet her life on, and how she’s doing now.
For more information about RSD/CRPS, including a list of published studies evaluating the effectiveness of ketamine-coma therapy and other treatments, check out the show notes for this episode at https://painopolis.com/ketamine-coma-therapy-for-rsd-crps/.
Does Your Doctor Work for You or Big Pharma? Dollars for Docs
Review: 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. Various studies indicate that doctors who take payments or perks from Big Pharma prescribe pricier brand-name drugs in greater proportion than their peers received no remuneration.
Granted, there’s nothing illegal about these financial relationships. But 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 financial ties in order to be fully informed when making healthcare decisions. Dollars for Docs is an online tool that 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 give you similar financial data about your dentist, optometrist, chiropractor, and podiatrist.
Today, 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?
After listening to this episode, be sure to check out our show notes at https://painopolis.com/painopolis-reviews-dollars-for-docs/. You’ll find a link to Dollars for Docs, plus further information to help you navigate the medical-industrial complex.
Uncle Sam Is His Dealer: Medical Marijuana
Meet the chronic-pain patient who talked the U.S. government into giving him 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 medical conditions.
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, government-approved weed for more than three decades. And he’s permitted to smoke it anywhere in the U.S. that tobacco smoking is allowed.
We chat with Rosenfeld about how he persuaded the feds to stop bogarting the pot; what the rest of us can learn from his decades-long reliance on medical cannabis; 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
Go to this episode’s show notes at https://painopolis.com/legal-medical-marijuana-for-chronic-pain/ for more information about Rosenfeld. We’ve also included links to an array of published studies investigating the medicinal uses of marijuana for chronic pain and other ailments.
The topics on this podcast are so interesting. I really enjoyed the JFK podcast—despite there being many, MANY different shows/theories/books on JFK, I learned new things about him and his pain challenges. I also really enjoyed the episode on the person who fought the government and won in his attempt to get medical marijuana. Looking forward to other episodes!
Humanizing the stories of chronic pain with compassion
Painopolis humanizes the stories of people coping with chronic pain. It puts emotions, feelings and context to the participants day-to-day lives in relateable ways. If you are somoene living with chronic pain, let these interviews you remind you that you are not alone. If you know someone who dealing with this very real issue, let this podcast be your guide to deeper understanding, patience and empathy.
Painopolis Is Equal Parts Informative and Inspiring
Painopois is a very well crafted show that showcases those living with various chronic pain issues. The stories are honest and inspiring...I listened to the one about the ballet dancer who created his own diet and exercise regimine to help counter the effects of Parkinson's Disease. I found his story fascinating and listening to his story made me want to look more into the organization he founded. Very NPR story meets Sunday Morning.