In mid-March, the Davis Phinney Foundation offered a webinar on the rise of Parkinson’s disease (PD) worldwide, featuring Michael Okun, MD, a movement disorders specialist at the University of Florida who is a co-author of the new book, Ending Parkinson’s Disease. Dr. Okun discussed the current knowledge about how to prevent PD and what actions individuals can take to try to impact the increase of PD long-term. There was a Question and Answer session as well. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

The webinar was recorded. You can register for free to view the video here.

If you have questions about the webinar, you can contact the Davis Phinney Foundation at contact@dpf.org or by phone at 866-358-0285.

To learn more about the speaker’s new book, Ending PD, visit here.

The speaker mentioned several ways to get involved in PD research:

• Federal registry
• Fox Trial Finder
• Parkinson Foundation: 1-800-4PD-info

Now… on to our notes from the webinar.

– Lauren

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Is a Parkinson’s pandemic coming? – Webinar notes

Presented by the Davis Phinney Foundation

March 11, 2020

Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

“Pandemic” is a word we now hear frequently in the context of the novel coronavirus, Covid-19. The word is typically used to describe infectious disease. However, in terms of geographic range and scope of illness, movement disorder specialist and researcher Dr. Michael Okun argues there is the potential for a “pandemic” of Parkinson’s disease (PD), as increasing numbers of people around the world are impacted by this often-disabling illness. PD is the second most common neurologic disease in the world after Alzheimer’s disease (AD), and rates of PD diagnosis are increasing faster than AD in recent decades.

While we do not yet have a cure for PD, and Dr. Okun hopes we may eventually find one, we now know a great deal about environmental exposures that increase the likelihood of developing PD and should turn our focus on prevention. He advocates for reducing or eliminating these toxic exposures so that fewer people will go on to develop PD. Dr. Okun is a co-author of the book Ending Parkinson’s Disease, which came out in March and touches on many of these topics.

Globally, about 6 million people live with PD. The worldwide population is aging overall, and rates of diagnosis continue to climb, so this number is expected to continue to grow. PD is not an infectious disease; nonetheless, its rapid growth could eventually overload many of the healthcare systems in place. One in 15 of us will get PD in their lifetime, and these numbers are rising for many reasons: individual risk factors, age, and industrialization. From now until 2040, PD cases will more than double. This rate of increase is not only explained by aging populations, and Dr. Okun argues that we need to take notice and expand our focus to prevention as well as treatment.

The greatest development in the last 200 years isn’t the computer, it’s the doubling of the human lifespan. The human body is living far longer than it used to – which is a good thing! But it means there are also more people with chronic and degenerative diseases. Being male and living a long time are two factors that set you up to develop PD. Living in an industrialized society also increases the risk of PD, likely due to one’s exposure to pesticides and other environmental toxins.

These environmental exposures include past exposures to Agent Orange during the Vietnam War, but also substances that are still in use today such as the chemical paraquat, an herbicide that is banned in most other developed nations, including China, and that is known to cause PD. Trichloroethylene (TCE) is a toxic solvent used in dry cleaning and some industrial processes, and is also a known risk factor for PD; it contaminates groundwater in many sites throughout the United States. These and other chemicals that contribute to the development of PD are discussed in more detail in the book Ending PD. Dr. Okun and the other co-authors advocate that the use of these substances should be banned in the US.

The book also highlights the need to take a lesson from history about other diseases and where activists have been successful:

• Polio: What were the elements necessary for people to get ahead of that disease and cut it off?
• Human immunodeficiency virus (HIV): How did that change from a death sentence to now, a largely manageable chronic illness?
• Breast cancer: Where it has progressed in the last 20-30 years?

The Parkinson PACT:

P = Prevention – prevent pesticide exposures

A = Advocacy – we haven’t reached the level of previous illnesses mentioned in terms of activism and civic engagement

C = Care for all people who have this disease

T = Treatments – need to develop new treatments

Right now, federal funding from the US government, which is the largest funder of research in the world, is just under $300 million a year for PD. To achieve the level of success we have reached with these other diseases, such as HIV, Dr. Okun estimates we need $3 billion a year to fund PD research.

What can the PD community do to move the needle?

With the book Ending PD, Dr. Okun stated he and his co-authors were intentionally a little controversial: they wanted to push the envelope and further the dialogue. In general, the PD community is quiet and polite, but we may need to get louder to effect change.

The first step is getting involved. The more people that come together across the world, the more likely to be successful in ending this disease. He urged people not to worry as much about being politically correct in the process of getting the word out about the need for prevention and research in PD. HIV activists such as ACT UP (AIDS Coalition to Unleash Power) and disease researchers sometimes offended people in the interest of getting attention for a terrible disease that was being largely ignored. Sometimes they were incorrect, but they had a dialogue going and were able to get public attention and support. And it was worth it!

Today, we have many treatments available to help manage the symptoms of PD over the lifetime of the patient: oral medications such as levodopa, daily exercise, physical therapy and other rehabilitation therapies, surgical therapies such as Deep Brain Stimulation (DBS) and Duopa intestinal gel. These are important and useful therapies, but we should not be content with only treating the symptoms.

We need to be unafraid to make mistakes, to invest in things that don’t go anywhere but that indicate other avenues of inquiry. We need to take advantage of the group of people that support PD patients as being part of this movement. We need to be disruptive and aggressively participate in research.

“What’s new?”

Dr. Okun travels around the world and meets many different patient groups, the “greatest gift” he gets in his career. He has learned to always expect the question, “What’s new?”

• There is an influx of studies on inflammation and the immune system, and using the immune system to try to modulate the response to PD and clear bad proteins from the brain.
  • If we can “clean” your brain of bad proteins, do you still have PD? Do you get better? We don’t know, but we’re going to find out in the next 5 years.
• Several precision medicine approaches for people with specific genetic mutations that cause (GBA and LRRK2). Gene therapies may come out of this soon.
• In the microbiome, we are learning lots of interesting things about PD and the gut and the brain
• Neuromodulation such as DBS has been around for a long time and we’ve gotten really good at delivering it, but now lots of further finessing this therapy.
  • Eventually we will have closed loop DBS that can adapt to the individual’s symptoms and needs.
  • Possibly, new stimulation targets in the brain may expand the symptoms we can treat with DBS.
  • Lots of new, more sophisticated technology to deliver the stimulation.  
  • Optogenetics is an area of research in trying to control cells and pathways to understand circuits and guide us in delivering stimulation.

We need to catalyze more funding into this research even as we also prioritize banning of the toxic substances that cause PD in many individuals.

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Question and Answer Session

Q: Is more PD diagnosed at a younger age than in the past?

A: About 10 percent of PD cases are now diagnosed before the age of 40; the young-onset PD (YOPD) group is growing faster. A lot of these younger cases may have more dystonia, non-motor rather than classic PD motor symptoms. Some of the increase may be due to better recognition that this is still be PD, whereas in the past, PD was thought to affect only older individuals. Younger cases are more commonly associated with genetic factors. There is more YOPD than in the past, but we are also becoming more savvy about diagnosis. We don’t have the data to say why yet but in the next 5-10 years we’ll know more about this.  

Q: Why is PD increasing at a faster rate than AD or other neurological illnesses?

A: We don’t know why. In the book, we took a little latitude to explore some of those possible causes. Seeing more and more exposure to various chemicals in our environment, such as pesticides, is very suggestive. As mentioned, TCE has a high association with PD but still occurs widely in the US. Paraquat has been banned in many other countries, but continues to be used as a pesticide in the US, and is highly associated with cancer and PD. In the Netherlands, they have instituted very aggressive control over pesticides and other dangerous chemicals; it is too soon to say but it seems like they may be experiencing a downturn in the number of PD cases.

In the US, the Environmental Protection Agency (EPA) was on a better path towards protections, but under the current administration, many regulations are being blocked. Even China is doing better than the US on paraquat.  

Q: Is it true that golfers have higher rates of PD than the general population?

A: He isn’t aware of specific evidence of this. However, playing a lot of golf on courses that have been sprayed with pesticides may increase your risk of developing PD. The amount of exposure matters. Note – If you already have PD, you can keep playing golf! It may increase your risk of getting the disease but shouldn’t affect you if you already have it.

Q: Are there myths in the public view that stunt our participation?

A: The biggest myths are around diagnosis – people think, you can’t have PD if you’re too young or too old, or don’t have a tremor. Getting the correct diagnosis is so important, and educating people about what PD is and how they can still live good, productive lives. Many of his patients say that their lives are better after receiving a PD diagnosis, because they can seek treatment and find their lives to be more meaningful.

Another huge myth: “there is no treatment for PD.” There is no cure, currently, but there are definitely treatments!

Q: Is there any evidence that the disease can be prevented or delayed with any of these measures?

A: Dr. Okun described different research “buckets,” or categories of research:

• Bucket 1 – Disease modifying factors that would slow or stop progression of PD; this bucket is very low as we do not yet have much information about this.
• Bucket 2 – All our current treatments for PD symptoms – levodopa, other oral medications, DBS, Duopa, etc. This bucket is full!
• Bucket 3 – Precision medicine, a true cure, this bucket is EMPTY. A cure is a lot more complicated; diseases are really hard to cure in general.

To be able to fully answer this question, we need more funding into Buckets 1 and 3, and we need thousands of participants. Alternatively, if scientists are able to find a great biomarker to diagnose PD, this could potentially lower the number of participants necessary.

Q: What can we do to help?

A: As a community, make sure that you volunteer for clinical trials (always what you are comfortable with!). Don’t just volunteer for device or drug studies, but also for studies searching for biomarkers – these are so important for understanding and eventually modifying the disease.  

• Federal registry
• Fox Trial Finder
• Parkinson Foundation: 1-800-4PD-info

Q: Does rasagiline (Azilect) slow down PD? My husband was just started on it for this purpose.  

A: The Food and Drug Administration (FDA) has voted not to approve rasagiline for the purposes of slowing progression of PD, based on the evidence level. That doesn’t necessarily mean it doesn’t modify the disease, just that the evidence wasn’t sufficiently strong for the FDA.  Remember that PD isn’t only one disease; there may be patients who would benefit from certain therapies and others who don’t. We can’t tell the difference yet.

Q: Are there current gene therapy clinical trials?

A: If you have the GBA mutation or LRRK2, there are studies that you could qualify for; some might be disease-modifying drug studies or gene therapy studies. The first step is to understand your genetic profile. Some people do this through 23&Me but he recommends a more reputable route of going to a medical center and pursuing this with your neurologist, to get the most accurate and useful results.  

Q: Do you recommend heavy metal testing?

A: No; as a neurologist, it can be useful for certain things like neuropathies, rare occasions of poisoning. When your doctor examines you, if you have any signs of heavy metal exposure, they may decide to test you.  But every PD patient should not be tested. Some places in the country offer chelation therapy that purports to separate the heavy metals from your blood and tissues, but this is NOT recommended, it has not worked out well for patients who have done this.

Q: Is PD related to amyloidosis?

A: Amyloidosis is a rare disorder that can cause autonomic and other issues due to abnormal protein buildup in your organs. We don’t have a link between PD and amyloidosis currently. That doesn’t mean the link isn’t there, but we haven’t uncovered one yet.

Q: Why did you write this book? What do you hope readers will take away from it?

A: We wrote this book because we felt that we as physicians need to get more involved too. It’s not enough for us just to care for patients. We need to do more, have bigger voices to try to raise awareness, and take lessons from these other illnesses that have seen successful treatments or cures. Like the AIDS group that took the FDA by storm, or the March of Dimes with polio, we need to step up and make some noise.

Q: What do you say to people who feel overwhelmed with their daily life and care and don’t feel like they have the bandwidth or ability to get more involved?

A: Always take care of yourself first. Sometimes, if you feel overwhelmed, it may be that your clinician is focusing too much on the motor symptoms and not enough on the non-motor issues that may be affecting your quality of life more, like sleep. Find a way to contribute to the cause that brings meaning to your life:

• Writing a check
• Walking a race
• Helping someone else with PD
• Signing a petition
• Trying to inspire other people around you
• Asking for help

Find a way that you can do things within your limitations. You may not have control over this illness, but you can control your response to it.