Phoenix, Arizona • May 2026
Randy L. Thurman, CFP®, CPA/PFS™
I am a retirement planner by profession and a Parkinson’s patient by circumstance. So when I travel halfway across the country to spend a week surrounded by the world’s leading Parkinson’s researchers, neurologists, patient advocates, and fellow people with PD, I pay attention — with both hats on. The 2026 World Parkinson’s Congress in Phoenix was, without question, one of the most information-dense and emotionally resonant weeks of my life.
What follows are the twenty things that stuck with me most. Some will give you hope. Some will keep your expectations in check. And a few might make you laugh. That last category matters more than you think.
1. Day Zero: The Blood Test Is the Holy Grail
The conference technically started on Day Zero, and the opening session set the tone for everything that followed. Dr. Laura Parkkinen from Oxford presented on the biology of Parkinson’s disease — how the protein alpha-synuclein misfolds into toxic clumps in the brain, how the disease spreads through those brain cells over years before any symptoms appear, and how a new type of laboratory test called a Seed Amplification Assay (SAA) can detect whether the protein is already in its dangerous, spreading form — in spinal fluid, skin, and even stool. The field, she said, is now moving toward diagnosing Parkinson’s based on what is actually happening inside the body rather than waiting for tremors and stiffness to show up.
Her description of a blood test for Parkinson’s as “a holy grail” stuck with me. The goal is a simple, inexpensive blood draw that can detect the disease before a single symptom appears — giving doctors years of runway to intervene. We’re not there yet. But we are closer than we’ve ever been. As a patient and a planner, I find that combination of honesty and optimism exactly right.
2. Pickleball Was There — and It Belongs
I will confess that I played pickleball at the conference (because of course I did) and I picked up a handout from an exhibit booth called Pickleball for Parkinson’s that is developing a program called “Pick It Up.” The mission: train pickleball instructors on how to help players with PD play safely, effectively, and confidently. Given that pickleball is arguably the fastest-growing sport in America, has relatively low injury risk, and demands the exact combination of footwork, hand-eye coordination, and social engagement that researchers say is beneficial for Parkinson’s, this program deserves more attention than it got.
Rock Steady Boxing — a non-contact boxing fitness program designed specifically for Parkinson’s — had a prominent presence at the conference as well, which reinforced a theme I heard all week: exercise is not optional. The specific form it takes matters far less than the fact that you enjoy it enough to keep doing it.
3. Parkinson’s Is Not One Disease — It’s Several
One of the most intellectually satisfying sessions of the week was actually a back-to-back pair: Dr. Sam Fereshtehnejad from the University of British Columbia on clinical subtypes, followed by Professor Charalampos Tzoulis from Bergen, Norway on biological subtypes. The short version: no two Parkinson’s patients are alike, and the differences between them are not just cosmetic — they reflect genuinely distinct biological mechanisms that are likely to require different treatments.
Dr. Fereshtehnejad’s research identified three clinically distinct groups based on symptoms beyond the classic movement problems: a Diffuse subtype (early REM sleep behavior disorder — the condition where you physically act out dreams — along with blood pressure drops when standing and early memory changes — faster progressing), a Motor/Slow Progressive subtype (primarily tremor, fewer non-movement symptoms, slower decline), and an Intermediate group in between. Most of us have never been told which subtype we are. That is about to change.
Professor Tzoulis added the biological layer: his research group discovered that roughly 20 to 25 percent of people with Parkinson’s who have no known genetic cause actually have a distinct disease driven by failing energy production in their brain cells — a subtype he calls MitoPD, for mitochondrial Parkinson’s. These patients are more likely to be female and more likely to have the slower-moving, rigid form of the disease rather than tremor. His dry comment when asked how we test for this in living patients: “We can’t be taking brain samples from living people. Well, we can, but we shouldn’t.” He is working on a blood test. Watch this space.
4. Stem Cells: Japan Is Selling What the Rest of the World Is Still Testing
Professor Roger Barker from Cambridge delivered what was easily the most carefully balanced session on stem cell therapies I have ever heard. The history goes back to the 1980s: transplanting dopamine-producing cells from donated fetal brain tissue into patients in Sweden produced stunning results in a handful of people — two returned to near-normal function for 15 years and stopped all medication. But overall, only a third of patients showed meaningful benefit, and the supply of fetal tissue is essentially impossible to scale.
The current era uses stem cells grown in a lab and converted into dopamine-producing neurons. Four published trials covering 33 patients have shown the cells are safe and produce some clinical benefit at higher doses. The BlueRock Therapeutics Phase 3 trial is now enrolling 102 patients and represents the most rigorous test to date.
Then there is Japan. Thanks to its approval process, a commercial stem cell therapy is already available there — at a reported cost of $350,000. Professor Barker received a LinkedIn message informing him of this price. His point to the audience was direct: “You should never have to pay for a stem cell therapy. If you are, you need to seriously look into that.” He was not subtle about it, and he shouldn’t be.
5. Cannabis: Good for Sleep, Modest for Everything Else
A palliative care physician who has practiced in both Colorado and Rochester delivered one of the more refreshingly honest sessions of the conference on cannabis and Parkinson’s. His opening made the parameters clear: he hasn’t inhaled, and no one is paying him to sell marijuana. What followed was a fair-minded tour through the evidence.
For the core motor symptoms of Parkinson’s — tremor, stiffness, and slowness — the human trial evidence is either negative or too small to draw conclusions. Cannabis affects the brain in ways that are biologically interesting for Parkinson’s, and animal studies look mostly positive, but the human trials have been too small to tell us much. There is a Czech survey showing 31 percent of cannabis users reported tremor improvement, but the speaker noted that has not matched his experience with US patients.
For non-motor symptoms — the ones that don’t involve movement — the picture is more encouraging. From his palliative care practice, he reported consistent benefit for sleep, appetite, nausea, pain, and anxiety. He recommends CBD over THC for most patients because THC risks worsening apathy and can trigger anxiety or even hallucinations. Start low, go slow, stay with the same dispensary (product consistency matters enormously), and — critically — tell your neurologist. He described colleagues who could not figure out why a patient’s motivation and energy were getting progressively worse, only to eventually learn the patient had been using a lot of cannabis to treat their symptoms. When cannabis directly stimulates certain brain receptors, it suppresses dopamine — the last thing a Parkinson’s patient needs more of.
6. Diet: The Mediterranean Diet Has Two Clinical Trials. Two.
Dr. Fiona Lithander from the University of Auckland gave what was probably the most clarifying talk of the conference on nutrition. She came with a strict rule: she would only discuss gold-standard clinical trials — studies where participants were randomly assigned to a treatment or a control group — conducted in people with Parkinson’s. No animal studies, no population data, no extrapolation from other diseases.
The Mediterranean diet — which is the dietary pattern with the most evidence for Parkinson’s — has exactly two such trials globally. Two. One showed improved cognitive scores and a better disease progression measure over ten weeks. One showed reduced constipation and lower gut inflammation over eight weeks. Both are promising. Both are tiny. There is no officially recommended diet for Parkinson’s disease, and anyone who tells you otherwise is running ahead of the evidence.
What this means practically: eat across all food groups, maintain a healthy weight, eat fiber for gut health, and nudge toward Mediterranean patterns — more olive oil, more fish, more vegetables, more nuts — without treating it as a rigid prescription. You do not need to live in the Mediterranean to eat this way.
7. Combining Diets: Promising But Hard to Stick To
The most innovative dietary research presented was a Canadian trial from the University of British Columbia that combined the Mediterranean diet with a ketogenic approach. The Mediterranean diet is high in fiber and anti-inflammatory foods. The ketogenic diet forces the body to burn fat instead of carbohydrates, producing an alternative fuel called ketone bodies that may help brain cells that are struggling to use their normal energy source. The idea was to get the benefits of both at once.
The results were encouraging on safety: no serious adverse events, no worsened blood lipids in the combination arm. But adherence — meaning whether people could actually stick to the diet — was a genuine problem. Participants found the ketogenic restriction extremely difficult to maintain, and the dropout rate was high. Dr. Lithander noted — with some humor — that even at the conference itself, you could not easily find ketogenic-compliant food. The results on whether it actually helped are still forthcoming; what has been published so far is only the safety and feasibility data.
Her caution on the ketogenic diet alone bears repeating: six trials have been completed, with documented concerns including vitamin and mineral deficiencies, raised blood cholesterol, weight loss from reduced appetite, and — in one New Zealand trial — worsened tremor and rigidity in the first four weeks. If you want to try ketogenic, do it with a dietitian watching your numbers.
8. Exercise Is Not Negotiable — and 80 Percent Is the Magic Number
This message was delivered in multiple sessions by multiple researchers, and by the end of the week it had hardened into something close to dogma: regular aerobic exercise at moderate-to-vigorous intensity is the single most powerful non-drug treatment for Parkinson’s disease. Dr. Daniel Corcos from Northwestern presented data from four studies showing that people with Parkinson’s who exercised at 80 to 85 percent of their maximum heart rate showed zero disease progression on brain scans that measure the health of dopamine-producing cells — over the entire study period. Not slowed progression. Zero.
JB Choi — a patient advocate who was diagnosed in 2003, hit rock bottom by 2011, and then discovered a forced exercise program — was one of the more powerful voices of the week. By 2018 he was completing ultramarathons. His primary workout: 45 minutes at 80 percent of maximum heart rate, five days a week. His backup session: resistance training. His philosophy: “We don’t rise to motivation. We fall to preparation.”
The American College of Sports Medicine guidelines for Parkinson’s call for at least three days a week of aerobic exercise at moderate-to-vigorous intensity, plus strength, flexibility, and balance work. People with Parkinson’s are currently 30 percent less active than healthy adults of the same age. That gap is costing people years of quality life.
9. The Science Behind Why Behavior Change Is So Hard
Dr. Matt Buman from Arizona State University delivered the behavioral framework session that preceded the exercise and nutrition talks, and it was arguably more important than either of them. His thesis: behavior change is a design problem, not a willpower problem. And for people with Parkinson’s, it is also a brain chemistry problem.
Parkinson’s depletes dopamine not just in the motor areas of the brain but also in the reward and motivation circuitry — the part of the brain that evaluates whether something is worth the effort. When this system is impaired, the brain overestimates the effort required to start a task and underestimates the anticipated reward. The result is clinical apathy — not laziness, not lack of discipline, but a chemical disconnection of the brain’s start button. Telling a patient with Parkinson’s-related apathy to just try harder is about as useful as telling someone with a broken leg to walk it off.
His solution was a diagnostic framework called COM-B (Capability, Opportunity, Motivation) for identifying exactly which barrier is preventing a behavior, and a Stanford-developed system called the Fogg Behavioral Model for designing around the problem. The alarm clock story captured the approach perfectly: put the alarm clock across the room so that stopping it forces you to get up, and you have engineered the desired behavior without needing any motivation at all.
10. Habit Stacking: The Small Change That Compounds
Directly connected to the behavioral science session was the concept of habit stacking, which several speakers referenced in both the exercise and nutrition talks. The principle is simple: attach a new behavior to an existing automatic routine, using the old habit as the trigger for the new one.
After I take my morning medication, I will do two minutes of hand exercises. After my morning coffee, I will drink a full glass of water. After my morning walk, I will take a smoothie. These are not ambitious lifestyle overhauls. They are tiny bets that compound over time. Author James Clear puts it this way: a one percent improvement every day yields a 37-fold improvement over the year. For someone managing Parkinson’s on top of everything else in life, this framing is not just motivational — it is actually liberating. You do not have to fix everything at once. Fix one small thing and let time do the math.
The celebration piece is important and gets skipped too often. When you complete a tiny habit, celebrate it immediately and explicitly — a fist bump, a quiet “good job,” anything that provides an immediate emotional reward. You are manually triggering a dopamine response in a brain that is low on dopamine. This is not touchy-feely advice. It is biochemistry.
11. Making Exercise Stick Requires a Plan B
Professor Sandy Brauer from the University of Queensland made an argument that I found more useful than any specific exercise prescription: if you don’t have a coping plan — a pre-planned response to the specific obstacles you know will arise — your exercise program will not survive contact with real life.
She described coping planning as working out your “if-then” responses in advance. If it’s raining, I will walk inside in ten-minute loops. If I am traveling, I will find a hotel gym or do the workout from my room. If I have had the flu and fallen off for two weeks, I will restart at half the intensity. If I have been hospitalized, I will see my physiotherapist for a reassessment before resuming. These are not afterthoughts. They are the reason a program survives a year rather than collapsing after the first disruption.
She also made the social case for exercise more forcefully than anyone else at the conference: the most frequently cited motivator among Parkinson’s patients who are not currently exercising is not information, not equipment, and not physician encouragement. It is other people. Group classes, exercise buddies, Dance for Parkinson’s programs — anything with social accountability — consistently outperforms solo training in long-term follow-through. And yes, she confirmed: the dog is an excellent exercise partner. “There is no decision in that.”
12. Supplements: Probiotics Look Real, But Don’t Ask Which One
Dr. Lithander’s supplement review applied the same strict evidence standard as her dietary pattern review: gold-standard clinical trials in people with Parkinson’s only. Under that filter, the most promising supplement is probiotics — five rigorous, well-designed trials showing benefit for gut health, primarily constipation. One Malaysian trial published in the journal Neurology showed a significant improvement in bowel regularity over four weeks. More recent data suggests probiotics may also reduce inflammation markers in the blood.
The caveats matter enormously. Probiotics are not interchangeable. Different bacterial strains have different effects. Some strains may interfere with how the body absorbs levodopa. There is no standard recommended dose, no standard duration, and no clinical guidance on which specific product to use. When audience members asked which probiotic they should take, Dr. Lithander’s honest answer was: she cannot say. Neither can I. What she can say is this: about two-thirds of people with Parkinson’s are already taking some form of dietary supplement, and most of them have not told their neurologist. Tell your neurologist.
For the record, I use a probiotic, so this news is great. The BiotiQuest Sugar Shift Probiotic. I feel it makes a positive difference for me.
Other supplements showing early promise: omega-3 fatty acids combined with vitamin E (showed reduced inflammation in trials), and nicotinamide riboside (a form of vitamin B3 with some early evidence for slowing disease progression and reducing inflammation). Neither is ready for a firm recommendation — but both are worth watching.
13. DBS Has Come a Long Way in 40 Years
Professor Elena Moro from Grenoble gave a session on deep brain stimulation — DBS — that covered 40 years of history in 45 minutes, which is an impressive compression ratio. The basics: thin wire electrodes are implanted deep in the brain and connected to a small battery-powered device placed under the skin in the chest, much like a pacemaker. The device delivers electrical pulses that interrupt the abnormal brain signals causing motor symptoms. DBS does not slow the disease. But for the right patient, it can dramatically reduce tremor, stiffness, and the wearing-off periods between medication doses.
The most exciting development in DBS is adaptive DBS — systems that listen to the brain’s own electrical activity and automatically adjust the stimulation in real time rather than delivering a fixed, constant signal. Standard DBS is a light switch. Adaptive DBS is a thermostat. The next generation goes further still: feeding in movement data from wearable sensors so the device can respond to what you are actually doing — walking, sleeping, standing up — rather than just to what your brain is signaling at rest.
Professor Moro also addressed one of the most common patient questions: does having the GBA1 gene mutation — a genetic variant that increases Parkinson’s risk and tends to speed up cognitive decline — change the decision about DBS? The answer is nuanced. GBA1 carriers’ tendency toward faster cognitive decline affects the risk-benefit calculation, but DBS remains a viable option for carefully selected GBA1 patients.
14. Focused Ultrasound: Non-Invasive Brain Surgery Is Now Available
Dr. Michele Matarazzo from Spain presented on MR-guided focused ultrasound — a technology that uses hundreds of precisely aimed sound wave beams, focused to a single point deep in the brain, to eliminate a tiny targeted area of tissue without any incision, anesthesia, or implanted hardware. The patient sits in an MRI scanner while the treatment is delivered, awake and able to provide real-time feedback about their symptoms.
The procedure has been available for tremor-dominant Parkinson’s for several years. The significant news from this conference was that in 2025 the FDA approved using focused ultrasound on both sides of the brain in a single session — targeting the specific brain pathways that cause tremors and movement problems on both left and right sides at once. Previously, only one side could be treated, which left the other half of the body’s symptoms unaddressed.
Dr. Matarazzo was honest about the limitations: the procedure works best for patients whose Parkinson’s is primarily tremor-driven, and roughly 15 to 20 percent of patients have skull anatomy that makes it difficult or impossible for the sound waves to penetrate effectively. But for the right patient, it offers a real alternative to surgical DBS with far less procedural burden.
15. Disease-Modifying Therapy: Closer Than Ever, But Not Here Yet
Simon Stock from Cure Parkinson’s delivered the conference’s comprehensive report on disease-modifying therapies — meaning drugs aimed not at managing symptoms but at actually slowing or stopping the disease from progressing. His ten-year analysis covered 444 trials. The headline: we do not yet have a single proven disease-modifying treatment for Parkinson’s disease. Not one.
That said, several trials are generating genuine optimism. Creselevirumab, an experimental antibody drug that targets chronic brain inflammation, has reached Phase 3 trials — the final stage before potential approval. A drug called ambroxol (yes, the same ingredient in some cough medicines) is in Phase 3 for a genetically defined group of Parkinson’s patients. Nicotinamide riboside, the vitamin B3 derivative mentioned in the supplements section, has shown some signal for slowing progression. And a program targeting a specific gene mutation called LRRK2 — which causes some inherited cases of Parkinson’s — is still active despite recent setbacks.
Professor Tom Foltynie from University College London described the EJS Act PD study as the world’s largest Parkinson’s trial — simultaneously testing three existing drugs (a blood pressure medication, a diabetes and weight-loss drug, and a liver bile acid drug) in thousands of patients at once. His most quotable line on what a cure would look like: “A cure is multiple drugs that together make the progression curve close to flat. That is the target. We are building toward it.”
16. Early Financial Planning Is a Medical Recommendation
This one does not come from a scientific session — it comes from John Poma, a patient advocate and healthcare professional who was diagnosed with REM sleep behavior disorder in 2018 and Parkinson’s in 2022. He described sitting in a neurology appointment when a nurse asked him — out of nowhere, at his second visit — whether he had good disability insurance.
He did not see it coming. He went home shaken. But looking back, he called it exactly the right question at exactly the right time. The ability to detect Parkinson’s earlier — through biological staging, which means categorizing where someone is in the disease based on measurable biology rather than just waiting for symptoms — gives patients something they desperately need: a longer runway. If the disease can be detected years before motor symptoms appear — during the REM sleep behavior disorder phase, or even earlier through blood tests — that is years of additional time to make financial decisions, plan for care, adjust insurance coverage, and have honest conversations with family.
As a CFP and CPA who has spent 40 years helping people retire, I cannot agree more with John’s framing. Parkinson’s is a long disease. The earlier you plan around it, the more choices you preserve. The disability insurance question is not morbid. It is practical. And your financial advisor should be asking it.
17. The Patient Advocates Were Some of the Best Speakers of the Week
Three patient advocates in particular stood out in ways that the scientific sessions could not. JB Choi, the ultramarathoner, reframed what is possible for a person diagnosed with Parkinson’s. His session was not inspirational theater — it was a training manual, complete with specific heart rate targets, session structures, and a philosophy built on preparation rather than motivation.
Astrid Liv Garshol from Norway gave the most uncomfortable and most necessary talk of the conference. She described her relationship with her medication as being like an abusive relationship — it made her feel good sometimes but was unreliable and sometimes hurt her. She described a neurologist who looked into her eyes and conveyed such hopelessness that it “extinguished her own.” And she delivered the most memorable line of the week: “Hope is not an infinite resource.” But she followed it with the most important one: “A plan is also hope.”
Paul Mayhew-Archer, who co-wrote the British sitcom The Vicar of Dibley and co-hosts the Movers and Shakers podcast, gave a humor keynote that should be required viewing for every newly diagnosed patient and every clinician who treats them. His thesis: “Every laugh is like Sinemet and Ropinirole all squeezed into a pill of joy.” The illness is bad enough as it is. Do not deny patients the chance to laugh at it.
18. 25 Million People Will Have Parkinson’s by 2050
Dr. Sirwan Darweesh from Radboud University in the Netherlands opened his session with a graph that quieted the room. In 1990, there were three million people with Parkinson’s disease worldwide. Today there are more than 12 million. By 2050, scientific projections put the number at 25 million.
This is not an abstract statistic. It is a planning crisis. Fewer than 10 percent of American Parkinson’s patients currently see a movement disorder specialist — a neurologist with specific expertise in Parkinson’s. Some US states have no movement disorder specialists at all. Every biomarker, every subtype, every exercise protocol, every behavioral intervention discussed at this conference is currently reaching a small fraction of the people who need it. The access gap is not a footnote to the Parkinson’s story. It is one of its defining chapters.
The closing panel session returned to this theme repeatedly. Community health workers, online education, peer support programs, the University of Tasmania’s free 12-week online course on Parkinson’s disease, the Parkinson’s Foundation’s rural provider training program — these are the tools the field has for reaching the 90 percent that specialist medicine is not currently reaching. They are not glamorous. They matter enormously.
19. AI in Medicine: Useful, Dangerous, and Here
The closing panel produced a candid and somewhat entertaining exchange on artificial intelligence in clinical medicine. Dr. Rajesh Pahwa, the moderator, shared that AI built into his electronic health record system drafts responses to patient messages that are “eight out of ten times” better than what he would have written under time pressure. Dr. Benzi Kluger noted that AI responses have been rated as more compassionate than physician responses in some studies — which is either fascinating or sobering depending on your perspective.
Dr. Indu Subramanian and Dr. Fiona Lithander offered the necessary counterweights. AI systems trained primarily on data from white, Western, higher-income populations will reproduce the biases already baked into that data. Women’s symptoms that tend to be underreported in clinical notes will continue to be underrepresented in AI outputs. And Dr. Lithander cited studies showing significant AI errors in clinical documentation — patients documented as having conditions they don’t have, and conditions they do have going unrecorded.
The consensus was cautious optimism: AI is a useful tool that must not replace clinical judgment, must be watched for bias, and should remain subject to human review. The concern I left with is this: the clinicians most likely to lean on AI without checking it are the ones who are the most overextended and seeing the most patients — which is exactly where errors will do the most damage.
20. We Are on the Same Team — We Just Don’t Always Act Like It
The session I keep returning to is not any of the scientific ones. It is the closing panel, where Dr. Subramanian from UCLA described what good Parkinson’s care actually looks like: not reactive, not episode-based, not putting out fires after the fact, but proactive, continuous, and built around the patient at the center of a team that includes their family, their community, their primary care physician, and their specialist.
Becca Miller, a care partner and advocate, put it more sharply: the entire healthcare model needs to shift from appointment-based to plan-based. Instead of a series of disconnected fifteen-minute visits where everyone tries to cram everything in, there should be a shared, documented, living care plan accessible to everyone on the team — one that survives provider changes and stays current as the disease evolves. She is right about this, and not just for Parkinson’s.
Professor Barker ended the week’s proceedings with a reflection on how to counsel patients being pulled toward stem cell clinics charging $25,000 and up for procedures with no peer-reviewed evidence. His framework was simple and exactly right: don’t dismiss. Don’t judge. Educate. Ask the right questions together. Be honest about what you know and what you don’t. And never, ever make the patient feel foolish for hoping. Because hope — as Astrid reminded us — is not infinite. Our job as clinicians, advocates, researchers, and fellow patients is to make sure it is well-directed.
I left Phoenix more informed, encouraged, humbled, and genuinely grateful. I hope to see you at the next World Parkinson Congress, 2029, in Quebec City.
About the Author
Randy L. Thurman, CFP®, CPA/PFS™ is CEO and Managing Partner of Retirement Investment Advisors, Inc. (TheRetirementPath.com), a fee-only fiduciary retirement planning firm with offices in Oklahoma City and Frisco, Texas, managing approximately $1.5 billion in assets under management. He is also a person living with Parkinson’s disease, a runner, a pickleball player, and a white belt in Brazilian jiu-jitsu. He attended the 2026 World Parkinson’s Congress in Phoenix, Arizona.