Dan Keller 0:02

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

A large part of improving Parkinson's care and advancing research is through policy change at the federal and state levels, and a major way to bring about change is through advocacy by individuals and through organizations like the Parkinson's Foundation. To find out about these efforts, I spoke with two people working for policy change. Andi Lipstein Fristedt is the executive vice president and chief strategy and policy officer at the Parkinson's Foundation, and Ken Chason is a Parkinson's Foundation ambassador, US Army veteran, and a person with Parkinson's. I asked Ken how his background led him to become involved in Parkinson's advocacy.

Ken Chason 1:34

My career in public service really started in the early 1990s after law school, when I joined the Army. I spent nearly six years in the military as a lawyer. After that, I moved into federal service here in Washington, DC. I spent the rest of my time in government, recently retired, and spent most of that time in the area of program oversight. So, what that meant was being part of an effort that evaluated certain federal programs and made recommendations for things like enhanced efficiency and effectiveness—basically shining a light on issues so that people can address them. It also involved a lot of engagement with agency leaders, policymakers, including the Congress, talking about findings and recommendations for action. So over time, especially looking back on it, that led to some real changes in policies, practices, and even in the law. That's something that I found very meaningful, and it just felt good to be part of something to drive positive change.

So, about three years ago, I was diagnosed with Parkinson's, and as I started learning about the disease, I realized how much about it that I really didn't know, and how much most people don't know about it, it did seem to me. So that sparked an interest in raising awareness about Parkinson's and getting involved through the Parkinson's Foundation. After I retired from federal service, that naturally grew into advocacy, focusing on policy priorities to improve care, expand access to treatment, and ultimately, and hopefully, drive us closer to a cure.

Dan Keller 3:09

It sounds like you've got a great background for doing things in Parkinson's advocacy that might not be run-of-the-mill. A lot of people form support groups and community outreach, but you seem to have a background where you kind of know the system from the inside out.

Ken Chason 3:27

Right. I'm used to dealing with recommendations for improvement of federal programs and systems, dealing with policies, and dealing with policymakers, so it felt kind of like a natural arc from my professional career into what I'm doing in the Parkinson's space.

Dan Keller 3:44

Andi, from inside the Parkinson's Foundation, what does advocacy in Parkinson's look like to you, and what's your role?

Andi Lipstein Fristedt 3:53

Yeah, absolutely. Well, I gotta say, I think if you looked up advocacy and Parkinson's in the dictionary, as it were, you would find a picture of Ken. Ken, and so many of his counterparts at the People's Parkinson's Advisory Council and other folks that we work with across the foundation, have just been completely instrumental in this work. It can take lots of different forms. Ken, myself, and more than 300 of our closest friends were in Washington, DC, just a couple weeks ago, knocking on doors in the halls of Congress, advocating for really important policy changes around increasing research funding, implementing the National Parkinson's Project—which is a really important new initiative under a law that was passed in 2024—and pushing the government to ban paraquat, a toxic chemical that has been linked to Parkinson's disease.

But there's so many other ways to engage, and so many ways that the Parkinson's Foundation is creating that space for people to engage. You know, we're right on the verge of Parkinson's Awareness Month. By the time this airs, our Parkinson's Awareness Month Day of Action on April 7 will be in the rearview mirror. Some of the things that many of our advocates are going to be doing on that day are great examples of things that people can do anytime, right? Posting on social media, reaching out to your members of Congress, submitting a letter to the editor in your local paper.

We know that when we think about advocacy and what really drives policy changes, it's when people connect to a story and understand how Parkinson's affects—if you're a policymaker—your constituents, or if you're not a policymaker, your friends and your family members. That is what really drives action. So we are really trying to create those spaces for people to do that outreach to policymakers, whether you participate in a lobby day, a rally, a town hall, or organize your own event. In addition to letters to the editor, we've seen really incredible op-eds in this space, or signing or organizing a petition around some of these priorities.

One of the ways that people can do this is through our newly launched Parkinson's Foundation Advocacy Center. You can go to our website and pull that up, and it will give you a tool right in front of you. You don't even need to know who your member of Congress or your representative is. You can just log in right there, and it'll give you the tools to reach out to policymakers that represent you on the issues that you care about most in the Parkinson's space.

Dan Keller 6:28

Are all of the significant policymakers at the federal level, or do they extend down to the states and even communities?

Andi Lipstein Fristedt 6:35

It's a great question. Definitely not all at the federal level. There's no question that when we think about both Congress and federal agencies—whether it be the National Institutes of Health, the Environmental Protection Agency, CDC, or FDA—there are so many important agencies at the federal level, and of course Congress. But we are also seeing incredible action at the state level. We saw a really important bill signed into law in Texas to support research funding specifically related to brain health. Many state legislatures across the country are engaging in legislation related to paraquat and other toxic chemicals during this legislative session. This is a very busy time right now for state legislatures across the country. We're seeing things like Parkinson's disease registries and many other policies, so much of this is critically important at the state level, and there's so much that communities are doing from the ground up.

Dan Keller 7:34

Are some of those policy changes a direct effect of what the Parkinson's Foundation has been doing?

Andi Lipstein Fristedt 7:41

Yeah, there's no question about that. I mean, we've been really excited to see some important policy wins already. When it comes to research funding, we saw the administration propose very deep cuts last year. Congress roundly rejected that, and in fact, we've seen some modest increases in research funding, which is something that we really continue to push for, including $600 million a year in Parkinson's disease research specifically at the National Institutes of Health.

One thing we were really excited to see happen was regarding a proposed policy that would have made it more difficult to access deep brain stimulation. We know this is something that has been so helpful to so many people with Parkinson's, and we were able to engage with the Department of Health and Human Services around that issue and saw that policy change, so that access to that really, really important care can continue.

Dan Keller 8:39

Ken, you've had roles where you're sitting face-to-face with policymakers. If other people are in that situation, what do you want them to know, what should they ask, and how should they behave?

Ken Chason 8:52

Well, here's what I've learned from those experiences. Policymakers are very busy, staff are stretched thin, and issues compete constantly for attention. So if you want to break through, you have to make it matter. Facts, numbers, and statistics are all extremely important, but in my experience, oftentimes they're not enough on their own. You have to connect the dots and explain what it all means. An effective way to do that, as Andi mentioned, is through storytelling. In the Parkinson's space, that human narrative makes the issues real. When people hear directly from those living with the condition and from caregivers, it puts a human face on it and can turn abstract policy into something real and personal.

Andi mentioned the recent Parkinson's Policy Forum. I saw a lot of advocates from across the country do that very well there. I also had a recent experience in a different setting, which is kind of a story in and of itself. Another Parkinson's Foundation ambassador and I were giving a "Parkinson's 101" talk at a community center. We were told, "Don't go over 30 minutes because they've got bingo coming up on the agenda right after you guys." So we started in with the basics, talking about symptoms, diagnosis, and treatment. We could tell that people were engaged, but the moment that really clicked—where you could feel the energy shift—was when I worked my own story into the discussion. We ended up going pretty well past our time, and people were asking questions, extremely engaged. Finally, I said, "Are there any more questions?" and somebody yelled, "Bingo!"

So, I took that as a not-so-subtle clue to wrap it up, but even then, as we're packing up, people were coming up and asking questions, forming a line, following us out the door. I think that was a pretty good testament to the power of making it personal, building an understanding, and ultimately supporting concrete policy action. One final thing I'll say about that type of change is that real change, especially through government action, can take time. It's iterative, and it takes patience and persistence. But when people speak up and keep the message going, that's how you start to move the needle. I've seen the needle move across my years in government.

Dan Keller 11:17

When you're facing a policymaker or a staffer—you usually don't get to talk to the ultimate elected official, but the staffers do a whole lot in that regard—do you give them your own personal story, or statistics and numbers? What goes over the best if you give them a background, or are they going to read it?

Ken Chason 11:40

Well, in the recent Parkinson's Policy Forum, those of us with Parkinson's or caregivers told our stories. Of course, there was other information that we provided to staffers with some of the background information about Parkinson's itself. I think it's really important to combine the two things, but adding the perspective of somebody living with Parkinson's is very powerful and often resonates with them. A lot of times, what you find is that the people you're talking to will speak up and talk about a connection they have with Parkinson's, or explain what they didn't know about it. Maybe they didn't know about the non-movement symptoms, or maybe they didn't know about the prevalence of it. So I think it's good to do both, but I have found that adding the personal narrative is a really powerful way of meeting with folks.

Andi Lipstein Fristedt 12:32

I was just going to add one point to everything that Ken said, with which I entirely agree. While it's true that much is handled with staff—and look, I'm a former long-term congressional staffer, so I know how important it is to engage staff—I will say at the recent forum, people with Parkinson's sat down with more than 60 members of Congress as part of that event. I think that really speaks to the moment we're in. It speaks to the resonance of the issues being faced by people with Parkinson's, members of Congress, and state legislators. People are paying attention.

Dan Keller 13:09

It seems that the first problem would be getting an appointment allowed in. Is that a big barrier to talk to policymakers or their staff?

Andi Lipstein Fristedt 13:20

You know, less than you might think. Generally, members of Congress, policymakers overall, and certainly state legislators want to know what their constituents think. So when we reach out to an office on the Hill or in a state capitol and say, "We have someone from your district and they want to come talk to you about the issues that are most important to them," you'd be surprised how much success we have and how many people say yes. Again, calling back to my own time on Capitol Hill, anytime I got a meeting request from someone whom the senators that I worked for represented, the answer was yes. You can do that outreach and make those requests yourself, and we can also help here at the Parkinson's Foundation. If you're someone who wants to engage with your member of Congress and you don't know how, we're here to help you figure out how to do that.

Dan Keller 14:14

What opportunities do you see that could strengthen support policies going forward?

Andi Lipstein Fristedt 14:21

Look, we're in a moment of incredible opportunity. Part of that is given the reality that Parkinson's is the fastest-growing neurodegenerative disease, with more than a million Americans living with Parkinson's and 90,000 new people diagnosed each year. Policymakers have a responsibility to address diseases like Parkinson's that are impacting communities and driving up healthcare costs. We know that research for better treatments and research for cures has always been, and must remain, bipartisan. Again, we've seen that in recent decisions around research funding.

We know that when we think about research, we're in a really pivotal moment. Scientific advancements have been quick in coming, and much more significant advancements are within reach. So we know that it's really a time to be making these investments, and that there's a scientific opportunity, as well as a political and policy opportunity, to really drive research forward.

I'd also note that there's been incredible momentum at the state level for banning paraquat. There are about a dozen bills that have been introduced this year, some of which are still active. A lot more people and lawmakers know about paraquat and its links to Parkinson's today compared to even a few months ago. In some of these states, it would not be the first time that they acted to ban a pesticide to protect their residents; there is a precedent for this kind of action, and in fact, even the EPA at the federal level is taking notice. The administrator of the EPA recently noted that the agency is taking a hard look at paraquat. We are pushing them to move quickly with that reassessment to move us closer to banning paraquat once and for all.

I would also say that, in addition to all these scientific opportunities, it's really important to know that voters want policymakers to take action here. Voters say that the federal government should be doing more in the fight against Parkinson's. It's no surprise, because through polling we learned that 37% of voters say they have a family member or a close personal friend who has been affected by Parkinson's. People know up close and personal what Parkinson's disease means for people they care about and people in their communities, and they're ready to take action.

Dan Keller 16:42

I suppose there's also an economic, budgetary argument to be made to legislators in terms of prevention. If you get these chemicals out of the environment, you may prevent some cases and not put as big a burden on the healthcare system, regarding things like TCE or paraquat.

Andi Lipstein Fristedt 17:00

Well, that's absolutely right. First of all, we know that prevention is always a sound investment, right? We know that preventing disease always makes much more sense than treating it on the back end, especially in a place like Parkinson's where we don't yet have disease-modifying therapies. But I'll say also, when you talk about the economics of this, we have data that shows that these diseases cost the US economy $82.2 billion—billion with a B. So it is not complicated to understand that investing in this is the right thing to do for our communities. It's the right thing to do to improve health and quality of life, but when we look at economic impact, the costs are astronomical.

Dan Keller 17:54

Is that $82.2 billion figure annual?

Andi Lipstein Fristedt 17:59

Yep, it was $82.2 billion in 2024.

Dan Keller 18:04

Are there opportunities that could strengthen support policies going forward, and what more could you do to foster that?

Andi Lipstein Fristedt 18:14

Yeah, well, the first thing I would urge anyone to do is get involved. Go to policy.parkinson.org, which is the advocacy center that I mentioned. You can contact policymakers and ask them directly to support the things that you care about most, and the foundation is here to help. You can email us at policy@parkinson.org, and we're happy to help anyone figure out what they want to do. Is it writing that op-ed? Is it planning an event? Is it walking the halls of Congress with Ken? Ken, I'm just offering you up to everybody now! There is a way for anybody and everybody to get involved.

Dan Keller 18:52

Ken, you've been operating in this sphere in one way or another for your whole career—not with Parkinson's, but other kinds of things facing legislators and policy. You're probably pretty well-spoken and bold about it, but for people who feel self-conscious about sharing their stories, do you have any advice?

Ken Chason 19:13

I'll just say that that is obviously a very personal decision that folks have to make about how far to go out with their stories. It took me a little while to get there, and not everybody is comfortable doing that. I have to say that sometimes, even though I've been pretty public about it, it is not always comfortable to talk about all of the aspects of what it's like to live with Parkinson's. So at first, I was pretty guarded about who I shared the diagnosis with, but then after a little bit of time, I broadened the scope of that and went public with it.

But even for folks who aren't comfortable doing that, there are different ways to get involved and different ways to advocate for policy-based solutions. The Parkinson's Foundation has many of the opportunities that Andi mentioned for folks to get involved, and you can do that without sharing your story.

The one thing I will say is that when you do share your story and add that personal touch, it's very powerful. I've found that it goes a long way toward dispelling some of the misunderstandings about Parkinson's, which I think are still out there—that it's just a tremor disease, or that it only affects people above a certain age, which is not always the case. There are a whole host of things that go along with Parkinson's, and it's very important for people to understand the real face of the disease. So the personal story can be very powerful, but not everybody's comfortable sharing that, and there are a lot of different ways you can support policy-based action without taking that step.

Dan Keller 20:52

What gives you hope right now when you think of the future of the Parkinson's field?

Ken Chason 20:57

I'll just say I see a lot of energy around the solutions. Since I started getting involved with the Parkinson's Foundation, just seeing the number of people out there who are really enthusiastic about spreading the message and educating communities and policymakers about Parkinson's—you can just feel the energy. I think Andi mentioned that it seems like we're at a pivotal point with the whole thing, but I can just feel a lot of energy, just like at that community center where we were giving a talk. Well before the bingo game, you could just feel the energy. It was eye-opening to a lot of people, and they wanted to ask questions.

Dan Keller 21:37

How about you, Andi?

Andi Lipstein Fristedt 21:39

Absolutely. I would say a few things. First of all—and it's the easiest top-of-list ever—is people like Ken, right? There are so many. No one's exactly like Ken, but the incredible passion, commitment, and dedication of the Parkinson's community is what matters. That is what gives me hope, and that's the engine for our work every day when we think about the Parkinson's Foundation's policy work.

Two is the incredible work we're doing to find the right policy solutions, because advocacy only matters to the extent that you have really identified policy drivers that will make a difference for people with Parkinson's, and we have done that work. It is happening.

And then the third would be, in a time of extreme partisanship and extreme divisiveness where it can seem hard to get things done, any issue that has the kind of overwhelming support that our priorities have on both sides of the aisle is a really exciting place to be working.

Dan Keller 22:51

Ken, do you have any parting words or a nutshell message to people who want to be engaged in advocacy?

Ken Chason 23:00

Well, I would encourage people to get involved in advocacy if they're thinking about it. Really, the through-line in the whole thing is getting out there, educating people about Parkinson's, spreading the word, and shining a light on the disease, which builds a foundation for policy-based solutions. So, I would just encourage anyone who wants to to take that step and check out the resources that the Parkinson's Foundation offers to do that. I've been very grateful for those opportunities to get involved, hope to be doing that for some time, and enjoy working with others in the community who are doing the same thing.

Dan Keller 23:39

Great, thanks a lot to both of you. I'm sure this will spur some people to start thinking about getting more involved. It's great talking with both of you. Thank you. Take care.

If you would like to find out more about the Parkinson's Foundation's advocacy efforts, or to explore ways you can become involved, take a look at our advocacy center at policy.parkinson.org or visit parkinson.org/policy. You can learn about our policy priorities, take action through one of our active campaigns, or sign up for emails with the latest news and opportunities for action.

As we celebrate Parkinson's Awareness Month this April, we're excited to share our theme: Find Real Answers. Parkinson's disease can be complex and overwhelming, and one of the biggest challenges for people living with PD, care partners, and loved ones is knowing where to turn for reliable information, meaningful resources, and trusted guidance. Throughout Parkinson's Awareness Month, we'll be sharing ways the Parkinson's Foundation helps you find real answers, whether you prefer talking to someone on the phone, searching online, or attending events in person. We offer trusted, accessible support through our helpline, website, social media, and enhanced web tools. Find real answers with the Parkinson's Foundation. Visit parkinson.org/awareness to learn more.

As always, our PD information specialists can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode, or to let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dan Keller 29:27

Thank you.

Andi serves as Executive Vice President and Chief Strategy and Policy Officer at the Parkinson's Foundation, providing strategic leadership for the Foundation, ensuring mission programs are addressing the needs of the community, and guiding the Foundation's policy direction to advance impactful federal and state health policies. Andi previously served as Deputy Director and Chief Strategy Officer at the U.S. Centers for Disease Control and Prevention (CDC) and as Deputy Commissioner for Policy, Legislation, and International Affairs at the Food and Drug Administration (FDA). She worked for nearly a decade on the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP), including as Deputy Health Policy Director, where she led the drafting or negotiation of a wide range of health laws. 

Earlier in her career, she served as Campaign Manager and Chief of Staff to an Oregon state legislator and completed a fellowship at the World Health Organization. She holds a B.A. from University of Oregon and a Master in Public Affairs from Princeton University, where she studied health and health policy. 

Ken recently retired from a long career in public service as a federal attorney and senior executive, with experience spanning both the legislative and executive branches of the U.S. government. Over the course of his career, he spent 18 years at the National Science Foundation, where he ultimately served as Deputy Inspector General, working on matters aimed at promoting economy, efficiency, and effectiveness in agency programs and operations. He began his legal career in private practice in Georgia before joining the U.S. Army Judge Advocate General’s Corps, where he served on active duty as a military lawyer for more than five years, later transitioning to the federal civilian sector. 

Ken was diagnosed with Parkinson’s disease in 2023, and as he learned more about the condition, he became increasingly engaged as a Parkinson’s advocate—focused on raising awareness, connecting lived experience to meaningful action, and advancing policy-based solutions by engaging with policymakers to support improved access to care, increased research funding, and prevention efforts. He currently serves on the Parkinson’s Foundation’s People with Parkinson’s Advisory Council and is also a Foundation Ambassador, working to help ensure that patient perspectives inform programs, research, and priorities, while contributing to broader conversations about care, mental health, and the lived experience of Parkinson’s; he also writes about these themes and his own journey on Substack (kenchason.substack.com). 

Dan Keller 0:03

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

After a diagnosis of Parkinson's disease, people often start with levodopa to manage symptoms, increasing daily doses as needed, and adding other drugs to further control symptoms, but at some point, if drug regimens are not sufficient or adverse effects become troubling, it may be time to explore more advanced treatment options, like deep brain stimulation, or DBS. When considering DBS, a person needs to become educated about it, including how the procedure is done, what to expect in terms of recovery, and what benefits DBS can provide.

I spoke with two experts in DBS, each in their own way. Dr. Arjun Tarakod is the director of the Deep Brain Stimulation Program at Baylor College of Medicine in Houston. Samantha Helton, a patient of Dr. Tarakod's, is a person with young-onset Parkinson's who has undergone a DBS procedure and can give a firsthand account of it from a patient's perspective. Samantha, when did you start to feel like your medications weren't working the way they used to, and what was changing?

Samantha Helton 2:02

Well, my issue was I was just taking so many medications and having the side effects from those medications, and I probably noticed that a few years ago. It just seemed like every time I would go in, we'd have to change something, maybe increase medications. I wasn't getting the benefits of the medication as much as I had when I first started.

Dan Keller 2:24

And Dr. Tarakod, what are the types of signs that tell you that it might be time to start talking about more advanced treatment options, something like deep brain stimulation?

Dr. Arjun Tarakod 2:35

I'd say there are two common reasons, and then a few less common reasons that we might start thinking about deep brain stimulation surgery. I think the most common one that people run into is what we call motor fluctuations and dyskinesia. So, motor fluctuations are when the medications don't last as long, or you're noticing more dramatic shifts between when the medications are working and not working. This can lead to taking multiple doses a day.

And then the dyskinesias are symptoms that come as a result of using the medication. So, these are the typically twisting, turning, involuntary movements that you can get, usually when the medication dose is running a little bit high, but sometimes people can also notice these as the medication wears off.

Outside of that, the other common reason we might look at deep brain stimulation is for tremor that doesn't respond to medication, so that's one symptom that we say we can treat better with deep brain stimulation than we can with medication. Everything else is somewhat comparable treatment, maybe a little bit more persistent or reliable, but tremor is that one symptom that we can do a little bit better with the stimulation than with medication. Less frequent reasons would be other side effects from medications, or people wanting to reduce the amount of medication that they take. Those can still factor in, but those are usually not the main reason that we would look at the surgery.

Dan Keller 4:00

Since deep brain stimulation somewhat simulates or takes the place of levodopa medication, you had brought up dyskinesias with levodopa. Does DBS also risk having dyskinesias or not?

Dr. Arjun Tarakod 4:17

So you can get dyskinesias induced by stimulation. There are ways around this, and there are a couple of different targets that we use when we're trying to decide with someone with Parkinson's, if they're going to get DBS, what would be the best target for them. That's usually a discussion we have both with the patient and then with the neurosurgeon prior to the surgery. I do want to make it clear, though, that even if you do get dyskinesias with stimulation, there's usually ways you can adjust the stimulator to get rid of that.

Dan Keller 4:48

Right. Samantha, before you decided on getting DBS, what did you know about it, and what was your understanding of what symptoms it would take care of?

Samantha Helton 5:01

I didn't know too much about it, but I did, you know, obviously do a little research before. My main concern was the tremor. I had a really bad tremor in my right hand, and then it affected the way I did a lot of things. So that's what I watched videos on, and I saw how it helped people, the dramatic difference between when they had the stimulation on and when they had the simulation off, and that's when I started to really consider DBS, and Dr. Tarakod helped me with that.

Dan Keller 5:30

What expectations do you most often need to clarify what DBS can do when you're talking to a patient? So, what is the symptom control that they can expect, which ones may be ameliorated and which ones won't it touch?

Dr. Arjun Tarakod 5:46

Okay, so we usually will break down what DBS can help with into motor symptoms. So when we think of what dopamine does or what levodopa does, it has potential to treat almost all, if not all, symptoms of Parkinson's—maybe not every symptom in every patient, but we do have some people where their cognition feels like it does better with levodopa, or their mood does better with levodopa, but those are what we call non-motor symptoms. When we think of motor symptoms, this primarily centers around stiffness, slowness, tremor, so those are the symptoms that we would say reliably respond to deep brain stimulation. Dyskinesia, I would add on there too, if you have it as another one that can reliably respond to deep brain stimulation.

So it's good at treating those motor symptoms, as I mentioned earlier. Tremor is that one symptom that it probably does better than any of the medications in treating. With the other symptoms it's really just about prolonging the good periods and reducing the bad periods, so when we go back to those motor fluctuations or those ups and downs, having more periods where you feel like the medication or that feeling you get when the medication is on and working lasts a little bit longer with deep brain stimulation, and then the period where you notice that the meds aren't working, where you feel stiffer or slower, that tends to reduce.

But it is always important to highlight the limitations with deep brain stimulation surgery. So, aside from non-motor symptoms—it doesn't help with thinking or memory, it doesn't help with fatigue, doesn't really help with mood directly—it also isn't going to change the progression of Parkinson's, so it doesn't slow or stop the progression of symptoms. It just treats it kind of like how the levodopa treats symptoms.

And then there are even some motor symptoms which don't reliably improve with deep brain stimulation, and these would be things like walking or balance. That one always gets tricky, because you definitely do get people who walk better post-surgery. It's just not as reliable. I usually will try to break it down when I explain to patients that there are a lot of different things that factor into your walking, so if it's a question of stiffness or slowness, that ease of movement can improve with deep brain stimulation. If you have dyskinesias that are throwing you off balance, those can improve with deep brain stimulation, but that sense of balance, or what we call postural instability, or that loss of postural reflexes that we see in Parkinson's, that typically doesn't improve with the surgery. So, there are aspects of gait and balance that don't really tend to do better with the surgery.

Dan Keller 8:23

Are most of the risks associated with the surgery, like bleeding or infection, or are there other risks from the surgery, or from the actual DBS as it's operating?

Dr. Arjun Tarakod 8:36

So, I would say the main significant risks with deep brain stimulation surgery are going to be right around the time of the surgery itself, and these do go into things like infection or bleeding. Anytime you have a surgical procedure, there are going to be some known associated risks with that. Once everything is healed up and closed up, I would say the complication rate is exceedingly low. Infection is still a possibility, as it is anytime you have a foreign object implanted into the body—there is a slight increased risk of infection with those, but it doesn't tend to be a significant issue for most people.

The risks or side effects you can get with deep brain stimulation as a consequence of the stimulation itself are typically adjustable with adjusting the stimulator. So, the other frequently seen side effects we can see with deep brain stimulation would be speech changes or balance changes, but those can typically be reduced or eliminated when you adjust how you're stimulating. A lot of times, if we run into issues we might have... it's almost like a whack-a-mole, where we can make an adjustment that helps with the speech, but then the tremor comes out a little bit more. We might trade a side effect for symptom control, and those are some situations where we might see a person might prefer to stay with a mild side effect if it gives them a fair amount of symptom control. Samantha, can you tell me a bit about the testing that you had to go through before the surgery?

Samantha Helton 10:10

Yes, so the surgery is in two parts, but before you get to that point, you have to do a neuropsych evaluation, and this is probably very intimidating for some people, but I don't want people to be intimidated by it or not consider it because of this reason. But basically, it's to check your cognitive function, so the test is like memorizing—they'll read a, let's say, a story to you, you have to repeat what you can remember back, some memorization, logical thinking, that type of thing.

So, once I got through that, it was like a four-hour test. They do give you a break. Did that, they did put me before the board and get all that approved. And once that was done, it was just, you know, the normal medical MRI, CT, that type of test. You know, your typical blood work for surgery. But the neuropsych, I thought, was nothing that I was expecting until, you know, I was notified of it, but it's something that I was not concerned about because I'm a younger person, so it was definitely... I could see how people were very, very intimidated by it.

Dan Keller 11:13

Do you have any advice for other people about not feeling discouraged if they don't pass the neuropsych test, because of maybe declining cognition, just getting older?

Samantha Helton 11:25

I don't know whether you're not passing, so that might be some question for Dr. Tarakod, I'm not sure on that aspect of it.

Dr. Arjun Tarakod 11:32

I can chime in there, if that's okay.

Dan Keller 11:35

Yeah, sure.

Dr. Arjun Tarakod 11:37

So I think Ms. Helton brought up a good point with the "pass" part of it, and I always tell people when they're doing these tests that it's not really testing you to pass or fail. It's trying to get a sense of how your cognition is functioning versus where it would have been functioning 10, 20 years ago or before you had symptoms of Parkinson's. Everyone is tested to the point that they can't get questions right because we need to see limits on this, so everyone finishes that test feeling like they might have failed something, but that's pretty typical.

The reason that we do the test is we're trying to assess the risk of doing a brain surgery, and I also want to be clear that not all places do neuropsychological testing before the surgery. It's something that I definitely advocate for, but I know it's not standard practice everywhere. But the reason that we do it is if we do see changes with thinking and memory, and this looks like it's a significant change from what someone might have been functioning at before they had Parkinson's, then that risk of a decline of cognition with a brain surgery goes up more substantially. So it's really just to make sure that people are safe to do the surgery, and they don't wind up... maybe their tremor gets better, but then their thinking and memory is a lot worse, and their quality of life really doesn't improve with that. So we just want to make sure that anyone who we're sending to surgery is safe to do the surgery.

Dan Keller 13:06

Is part of the evaluation before offering DBS to make sure the candidate has a realistic expectation? And would you say that a satisfactory outcome—what someone considers satisfactory—really depends on their expectations going in?

Dr. Arjun Tarakod 13:24

I think that's very true. We do typically go through the expectations that people have with the surgery, and then we kind of correct it with what we expect could get better realistically with the surgery. That's another part of that pre-DBS evaluation that we typically do with patients.

That being said, a lot of people have in their mind what they want to get better, and even when we tell them what DBS can and can't do—I know gait is a big one for this, so everyone gets told through multiple visits what they can and can't expect from the surgery—but it is important to have those realistic expectations with it, because it's not the solution to all problems. Sometimes when we don't move forward with the surgery, it's not necessarily that someone isn't a good candidate for the surgery, or they're at a high risk for the surgery, it's just their goals for what they want the surgery to do is different than what the surgery is really going to be able to do.

Dan Keller 14:22

Besides the eligibility criteria we've already discussed, are there other criteria or evaluations that might surprise people?

Dr. Arjun Tarakod 14:32

I think within the neuropsychological testing—again, it's not something that all places do, but many places do incorporate it—it's not just for cognitive testing. It also looks at mental health. It's important that people have a sort of stable base and support structure to fall back on when they're going through something as major as the surgery. It's not a "you do it once and you're done" type of procedure. There's a few months of adjusting the stimulator and multiple visits, trying to get things dialed in the way that we want.

Part of that screening is looking at mood symptoms. Part of it is looking at what kind of support structure a person has. This can sometimes be an issue if someone lives alone and doesn't really have people who could either take them to appointments or help them if they're a little bit—I don't want to say incapacitated, but maybe having a little bit more trouble during the recovery process post-surgery. It is important to have people around to be able to help in those situations.

Dan Keller 15:35

With three FDA-approved DBS systems on the market, can you highlight any differences between what they offer and how a patient would decide among them?

Dr. Arjun Tarakod 15:48

I preface this that all three systems I think function well, and while at our institution we do use all three, I think the most important thing is with the neurologist who you're working with, or the neurosurgeon that you're working with, making sure that they're comfortable with a particular system, because you don't want someone either implanting or programming something that they just aren't familiar with. So, I think the most important thing is making sure that the neurologist, or whoever's going to be managing the stimulator, is familiar and comfortable with the system.

If you do have that option where they're using multiple systems, each one has its own sort of minor differences. I would say there's two main differences with programming strategies that are utilized to different degrees in different systems. So, one system uses something called adaptive DBS, which is the ability to adjust settings based off of recordings from the brain—that has its benefits and its limitations. Another system uses more image integration and a little bit more control of how you stimulate around the electrodes, so maybe a little bit more customization in the location of stimulation without that ability to adapt over time. And then one of the systems also has an ability for remote programming, so for some people who might live far away from the doctor who's managing the stimulator, that ability to adjust the stimulator without needing to drive into the clinic might be of benefit.

Dan Keller 17:31

Samantha, let's talk a little bit about your history. After you got the DBS, what was it like immediately after the surgery and the ensuing near-term period, and how long was recovery, and did you notice anything right away?

Samantha Helton 17:49

The first surgery was the brain surgery, and then you wait about two weeks, and then you have the device implant. Actually, for my recovery, I felt like the device that was implanted... I felt like that was a little harder for me to deal with than the actual brain surgery, other than the fact that, you know, being a female, couldn't wash my hair, all that kind of thing for a couple days, you know.

As far as the recovery process, it was pretty good for me, and then as far as improvement, I mean, I did... obviously, they don't turn it on, you have to wait a couple of times to go turn it on. You go to the office, you have visits once a month for about six months, where they dial it in, pretty much, in stimulation. I had to go back in for a second brain surgery just because we wanted to move the device after... kind of narrow down the target a little better, as far as dialing in, because some of my symptoms, they were improving, but my settings were so high for my stimulation that we felt like there was not a lot of room, necessarily, if I had to increase it later on for improvement.

I did see improvement, obviously. The first appointment I did have improvement, it was just a higher setting than what we would like to see, but after the second one, pretty much immediate, it's night and day, and my quality of life is so much better because of that.

Dan Keller 19:12

So, what do you think is the time period for you between the initial surgery and feeling comfortable, and you're kind of on a steady path?

Samantha Helton 19:25

As far as the surgery recovery, I would say about a month, because you've got the first one, and you want to stay out probably for two weeks for that, and then in two weeks, you go in, you have the device implanted, and then I would say after that, you know, you're on that six-month program where they're going to dial you in. I would say two weeks to a month after surgery to actually feel like back to yourself.

Dan Keller 19:51

Dr. Tarakod, is this sort of a typical course for someone who gets DBS?

Dr. Arjun Tarakod 19:53

Yeah, I would say the recovery is usually pretty quick. To expand a little bit on what Ms. Helton said, at Baylor, we do this as a staged procedure, so we do the brain surgery, and then two weeks later implant the battery, the pulse generator. There are some places where they do both of those procedures in the same surgery. The reason that we, in a lot of places, stage it is to reduce the amount of time that someone's under anesthesia for a given surgery, and that can help people come out of anesthesia a little bit better and can help with their recovery a little bit more, but it can be done either way.

Usually, we tell people it's good to take it easy after the surgery, but there aren't any major restrictions. So, we do have people who will go back to work fairly quick after they get the surgery done, if they're working, but we usually tell them you can use brain surgery as a reasonable excuse to take a week off—that's what I'd say we typically recommend, is at least take a week off. But there's no real rehab associated with it.

And then to maybe explain a little bit, when people see the results of the stimulation itself, it's pretty typical to see results fairly quickly, but those often fade as your brain is getting adjusted to the stimulation. We also can't crank up the settings too high right away as people are getting used to it, so we have these frequent visits over the course of a couple months just to get people used to the stimulation at a steady level. So I would say four to six months is probably typical for when we get people to a relatively steady or good functioning state. We still make tweaks after that, and I would say as time goes on, the longer someone has stimulation, the less we wind up needing to adjust it, but maybe four to six months is a reasonable expectation to get things dialed in.

Dan Keller 21:46

Are there any precautions that patients need to know about once they have fully gone through the process, have the electrodes, have the stimulator, and they're well on their way and out the door? I mean, things like getting brain imaging, MRI, or any of that, do they need to alert people about that?

Dr. Arjun Tarakod 22:04

Yes, in certain situations. So, anytime there's a very strong magnet or a very high electrical current involved, those are things that you need to be a little bit careful with. X-rays and other types of medical equipment aren't really going to be much of an issue, so if you needed to get an MRI, you can get them done. All the devices now are MRI compatible. You just need to do it under certain settings, so the radiologist should always be aware that you have the stimulator. Sometimes they need to use less strong magnets, or you might need to be in the scanner a little bit longer, just to avoid things that might heat up the device a little too much, but it is still possible to get all of that imaging done. The devices all have an MRI mode, or you just turn them off when you get those types of studies done.

For something like a CT scan or an X-ray, it doesn't really matter, so you can leave the devices on for those types of tests. The devices can also interfere with things like an EKG or an EEG, if you're getting one of those. So, a lot of times it's handy to take your controller with you if you have a stimulator and you're going to a doctor's office, just in the event that they need to do one of these other procedures, so that you can turn it off while they do their studies, just to avoid the interference.

Dan Keller 23:26

Samantha, looking back, what's the one or two things you'd want somebody considering DBS to understand?

Samantha Helton 23:34

Well, one, don't be scared when you hear brain surgery—you think that's very scary. I know I was kind of like that. Just don't be scared, trust your doctors. And the second thing I would say is make sure you have a conversation too with your doctors about, like you said, what the expectations are. I kind of knew what mine were. My main thing was, like I said, the tremor—it's completely under control at this point with some less medication, which is what we were going for in my case. The only thing is, you know, I kind of didn't know if I was going to have to go in for a second brain surgery, and then I did do that again, so I would say that was maybe something I didn't know was going to happen necessarily. So I would just say just have that discussion with all your medical staff.

Dan Keller 24:21

Dr. Tarakod, what would be your nutshell message to someone considering getting DBS?

Dr. Arjun Tarakod 24:26

I would say you have to really just look at if you want the results that the surgery can provide for you, because no one goes in saying they want to do brain surgery, and I understand that. I see a lot of people who want the results, but they want to put it off because they're scared of the surgery, and I think that's completely understandable. But when you put it off, the longer you wait... kind of a known thing, there's no age limit typically with the surgery, but as you get older you are more likely to have other health issues.

So I tell a lot of patients, let's say in their 60s or 70s: you don't have to do the surgery now, but doing the surgery when you're in your 60s or 70s is going to be easier to recover from than doing the surgery in your 80s. So it is one of those things where no one wants to do the surgery, but they want the results, so it's important to just be educated about what DBS can do, and if those results look like things that you would want to pursue, knowing that Parkinson's does change over time. I would say the most common thing I hear from patients is they wish they had done it sooner. When I think of the patients who get the surgery, they typically say that they wish they hadn't waited as long as they had to move forward with it.

Dan Keller 25:45

And for either of you, have we missed anything important to add or interesting that you want to say?

Dr. Arjun Tarakod 25:52

Maybe just... this might be a little bit of a question for some people listening with Ms. Helton and doing the surgery twice. In her case, we did do a revision. That's not a typical thing that we do. I would say maybe 1% of the time, or somewhere around there, we might look at a revision. So certainly do not go into the surgery expecting it. It's also not something that I usually will discuss with people too much when we first start talking about deep brain stimulations, just because I don't really expect it to be an outcome.

But in some cases, the wire is maybe a little bit off of the ideal target, and this is a question of maybe a millimeter or two in a direction outside of where we wanted to go. We still try using the stimulator first, as we did in her case, to see if we could get things under good control, and as she mentioned, we did get the tremor under good control, but we were using pretty high settings with that. So that brought up the question down the line: if we ever needed to make adjustments, we really didn't have too much room for an adjustment just because we were using such high settings.

And being that she was on the younger side, we expected her to do well with the surgery—she recovered well from the surgery. The idea of doing that revision surgery relatively early on did come up, just to try to get the wire in a better spot so that we didn't need to use quite as much stimulation to get that effect. And in her case, that wound up, I think, being the right decision.

Dan Keller 27:21

Very good, I really appreciate all the time and the information. It's a fairly voluminous discussion, but I think it really puts it into good perspective for anyone considering getting DBS. So, thanks a lot.

Dr. Arjun Tarakod 27:35

Happy to help.

Dan Keller 27:36

All right. Take care. Bye.

For more on DBS, search our website at parkinson.org for deep brain stimulation. There you'll find a fact sheet called Considering Deep Brain Stimulation, and a blog post featuring another person with PD who chose to get surgery. We also have a free book called Advanced Treatment Options, which talks about DBS and other options.

As always, our PD information specialist can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode, or to let us know what other topics you'd like us to cover, visit parkinson.org/feedback. Be sure to subscribe and rate us on Apple Podcasts, or wherever you get your podcasts.

We want to thank this episode's podcast sponsor, Boston Scientific, for supporting our mission at the Parkinson's Foundation. Our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dan Keller 29:27

Thank you.

Samantha currently resides in Montgomery County, Texas, with her high school sweetheart and their daughter. She has worked in the real estate industry for the last 23 years. She has lived with Parkinson's for many years but doesn’t let it stop her from living life. 

Dr. Arjun Tarakad serves as associate professor and director of the deep brain stimulation program at the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, Texas. He completed his neurology residency and movement disorder fellowship training at Baylor College of Medicine, his medical school training at UT Health, and his undergraduate training at Rice University. His clinical interests include Parkinson’s disease, essential tremor, and Tourette syndrome, with an emphasis on deep brain stimulation in the management of these conditions. His research interests focus on clinical therapeutics, with particular emphasis on disease modifying treatments.