Advocacy and Assistive Technology with Former Representative Jennifer Wexton

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast.

Dr. Correa:
Welcome back. I'm so glad to be here. I'm always excited to both listen to the voices and perspectives of our guests, getting a chance to talk with you, Katy. Now, Katy, I wanted to know, have you worked with an individual or a family that, whether in the hospital, in the clinic, had to use a speech-to-text or speech-assisted technology or anything else like that before?

Dr. Peters:
Well, I always love hearing your wonderful voice, Daniel. So yes, I have had a few patients with expressive aphasia, a few of my brain tumor patients, and they've really just used their cell phones or message boards. Really nothing fancier or more advanced than that. But when I've been to the AAN or some other meetings, they've actually had videos of some of those really advanced devices, and they're pretty amazing, and can really span a variety of different conditions in people that have speech challenges.

Dr. Correa:
Yeah. And I think here in an audio medium and in many other settings, we think of the voice as really the quality and the sound of the interaction, but there's so much more in our communication and our intention and our meaning, and we're going to get to explore that today. This technology and devices like that have made amazing strides over the years since we started seeing them in the public and in media, since seeing Stephen Hawking and others using them publicly.
And today, we have a special guest and a special format for this episode where we are welcoming former Representative Jennifer Wexton from Virginia to explore and interview her experience with her own condition and how she has integrated the use of text-to-speech technology as she manages with progressive supranuclear palsy.
Welcome back to the Brain & Life Podcast. Now, as we discussed in the introduction, our guest today, Representative Jennifer Wexton is a dedicated public servant and a former U.S. representative for Virginia's 10th congressional district, who served from 2019 to 2025. She's a lawyer by profession and has a history of advocating for issues of justice for all and community well-being. While she worked in Congress, she championed numerous legislative initiatives, including the Gabriella Miller Kids First Research Act 2.0 that aimed at advancing pediatric research.
And then in 2023, she shared with all of us her diagnosis of progressive supranuclear palsy and her decision not to seek reelection to focus on her health. As both a leader and someone living with a neurologic disorder, we really feel her experience and resilience continues to inspire us and many others, and we're so glad to have her here today.
Jennifer, thank you so much for working with us and adapting this interview to your speech to text. And so, we really appreciate you being with us, and I wanted to start off about your pathway to serving in legislative work. What prompted your interests in legislative leadership and in politics at first?

Jennifer Wexton:
I never saw myself running for office. There were very few people like me, women with elementary school-age kids, jumping in to run or serving in elected office. So I had no role models to look to for guidance. And I had a very fulfilling profession as a lawyer, where I got to help people, which is what my ultimate goal for a career has always been.
The first time I stopped thinking, "That's not me," and started thinking, "Why not me?" was hearing then-Senator Barack Obama in late 2008 when he came to speak at a rally in Ida Lee Park in Leesburg, just a few minutes from my home. His message of hope and change and, "Yes, we can," really struck me. It made me look around at the people who were supposed to be representing me and seeing someone who I knew was not doing their job of seeking justice.
I jumped into a local race to become my county's top prosecutor, the Commonwealth's attorney, and shared what I believed was a better way to serve our community. I've run in the alpha and the omega of campaigns, and that first campaign was an all-hands-on-deck effort from my immediate family. I joke that in Virginia, we love democracy so much that we have elections every year, and that year was the lowest turnout of the four-year cycle.
Although there were fewer voters than there were in a presidential year, the people who did vote tended to be higher-information voters, which was good for me. My mom came to babysit our two young children every weekend while my husband, Andrew, and I went out to knock doors and talk with voters. Although I did not win that first race, I came within a few points of taking out an entrenched incumbent, and a lot of people took notice.
Afterwards, I had people whom I had never met before coming up to me in our community, at the grocery store or the gym, thanking me for running and telling me they were inspired by my campaign. To this day, I still meet people who remember me from when I knocked on their door 14 years ago. That stayed with me, and I discovered that I could inspire people by doing what I believed was right, and that this was a real way I could make a difference in the lives of my fellow Virginians. And it turned out to be a good thing that I didn't win the race for Commonwealth's attorney, because if I had, I wouldn't have run for State Senate and learned that I had a talent for legislating.

Dr. Correa:
We're all glad you stuck with it, because you learned that talent and that part and skill of yourself. And what are other ways that your initial campaign and interactions with the communities that you served and worked with that shaped your approach to public service?

Jennifer Wexton:
When I ran that first campaign for Commonwealth's attorney, I was thrown headfirst into the world of politics. It was a very grassroots campaign, homemade literature to hand out on the doors, mostly just me and my husband running the whole operation. But in that very bare-bones campaign, I learned lessons that would follow me throughout my career.
By personally going up to my neighbors' doors and talking about my candidacy, telling them why I was running and asking for their vote, I got to hear firsthand what was top of mind for people in my community. I made a point to set aside time in all of my subsequent campaigns to personally go outdoor knocking, because I believe nothing can replace those face-to-face conversations. It's what's at the core of all politics, and it helped me to not only be a better candidate, but also to be a better representative.
And I never took for granted the volunteers who would come out to help power my campaigns, especially in tough races and tougher conditions. I did that work essentially on my own in my very first race. And so, I know how important it is to have people around who believe in you and are willing to put in the work to help our campaign be successful.
And finally, I learned that, ultimately, the best ideas come from the people I meet out in the community. When I did get elected to public office, first to the Virginia State Senate and then to Congress, the legislation that I sponsored most often was in response to real problems that people brought to me. The most important part of my job as a public servant is to listen, and I believe that listening has served me well throughout my career.

Dr. Correa:
I think the skill of listening is so important for so many of us to consider and develop in connection with our family, with other community members, and it really seems like that seems like a key component of your work in legislative and public service. But how was it, with everything that was going on and as much work as these campaigns and public service was, listening to yourself and to your body? When and what was it that you first noticed was changing in your health?

Jennifer Wexton:
Looking back now, it is hard to believe how seemingly innocuous my first symptoms were. It started with my toes clenching up and curling inward, especially when I was in bed at night. I had just begun my time in Congress, which included lots of walking around in uncomfortable shoes on unforgiving marble floors around the Capitol Complex.
I didn't really think much of it, and I'll pause briefly here in my story to say, as I'm sure your listeners have heard before, don't ignore changes to your health, no matter how minor or inconsequential you may believe them to be. I'd come up with plenty of reasons to explain away my earliest symptoms, even as my gait became more of a shuffle, and I began tripping more frequently.
It was a stressful time by then in the midst of COVID, and I was sure that the annoying and uncomfortable, if not strange, changes that were taking place must just have been manifestations of that stress and new work-life adjustment. It was soon after that one symptom alarmed me enough to do something about it. I was on a virtual event with constituents, and my voice began to waver, almost as if I were scared or shivering.
I finally had enough sense and courage to google my symptoms. You can imagine my shock when the answer I got was that I was experiencing symptoms of early-onset Parkinson's. I remember thinking, "This can't be happening to me." Parkinson's is a disease that old men get, but that one Google search is what began my long journey towards a diagnosis and to where I am today.

Dr. Correa:
So like many things, it started with just the small things, and then you started to see your healthcare providers and get this information about a possible diagnosis of Parkinson's. But I know, as you're going to describe for us, it's not always that simple, and we get into that also with our medical expert in the second half of this episode. But what led to your eventual diagnosis of progressive supranuclear palsy, or PSP, and what challenges did you face in obtaining an accurate diagnosis?

Jennifer Wexton:
It was a very, very long and challenging process before I was diagnosed with PSP, but my story is not unique. The issue is that there is no definitive test that tells you, "Yes, you tested positive for Parkinson's or for PSP." I went through exam after exam and medication trial after medication trial, as months turned into more than a year before my doctor finally settled on my diagnosis, and that included an original diagnosis of just Parkinson's.
When I was diagnosed first with Parkinson's, I was put on a drug called Sinemet, or more correctly, the generic carbidopa and levodopa, the gold standard medication to help manage Parkinson's symptoms like mine. For the first time in many months, I felt some relief as my clenched muscles began to relax. And even more so, I was relieved that it appeared we finally had an answer to the question I had been asking for months and months, beginning with that first Google search of my symptoms, "What's wrong with me?"
But over the course of the following few months, I noticed my symptoms progressing more rapidly than other patients, and the levodopa was helping less. My neurologist at the time thought that I may have had multisystem atrophy, MSA, another atypical parkinsonism, like my PSP. She referred me for an MRI, which came back as not indicative of MSA.
The MRI report noted the presence of some midbrain atrophy. When I asked my neurologist what that meant, they assured me that it was a normal effect of aging. And once again, I had to start wondering, "If I didn't have MSA, what was going on with me?" By this point, I knew well the importance of listening to my body and sought out a second and a third opinion.
It wasn't until I met with the doctor, who is now my neurologist, that I was asked some specific questions about what I was experiencing, and he reviewed my MRI with a fresh set of eyes and a new perspective that it became clear, the telltale sign of midbrain atrophy in the shape of a hummingbird on my MRI scan, that I was battling a much more severe and faster-progressing form of atypical parkinsonism called progressive supranuclear palsy, PSP.

Dr. Correa:
So even you with the Congressional Healthcare Service experienced many of the challenges that the community with a variety of neurodegenerative disorders, especially the parkinsonian neurodegenerative disorders, have in working through to what is their diagnosis. And I'm glad that you saw several different doctors, and you sought second opinions, and that each of them was open to that opportunity to reevaluate your symptoms and diagnosis.
I know that Dr. Miyasaki in our discussion shares the importance of that in many different neurologic diagnoses, that your doctor is regularly reassessing and convincing themselves and evaluating all the components that that is the correct diagnosis, as you move forward with treatments and see how you respond. Now, we're here listening and experiencing one way you use assistive technology, but how did you learn and get access to the many options of assistive devices and technology, including speech-to-text options?

Jennifer Wexton:
It began just as a way to help me keep doing my job. With PSP's impact on the volume and clarity of my speech, it was difficult to give speeches and participate in committee hearings. My team and I found a very basic text-to-speech app free on the App Store, which helped read my speeches and such aloud. It got the job done, but it was very robotic. It didn't sound like me, and truthfully, I wasn't a big fan.
After a few months of that, I got an offer from an AI company, ElevenLabs, to help me create an artificial intelligence replica of my voice. I was apprehensive at first. That was not anything I had really considered, because, frankly, I didn't expect it to be a possibility. Once my team sent ElevenLabs over an hour of old audio clips of my public speeches, they turned around a voice model in just a few days.
I was with my husband, Andrew, when I heard the first test of my new AI voice. The sample was a recording of Hamlet's soliloquy, "To be, or not to be, that is the question." I cried happy tears. I hadn't seen my husband smile that big in a long time. The AI voice model sounded so natural. It truly made me feel like I'd gotten my voice back.
I've been able to rely on my AI voice model so much over the past year. I used it in speeches on the House floor, making history as the first person to use an alternative and augmentative communication device on the floor, as well as at public events and even in my day-to-day life. What you're hearing right now is my AI voice, my words spoken aloud pretty much how I would have spoken before PSP robbed me of my voice.
The one issue I have with it is that because it was created from my speeches rather than conversations, sometimes it can sound like I'm making a big proclamation or like I feel very strongly about what I say, which doesn't work very well when I'm, for example, asking my husband to pass the ketchup.

Dr. Correa:
Such an excellent point about just the tone of our speech and how differently we use it in our regular speech and interactions day-to-day with family and friends as opposed to proclamations, at work, and in other situations. It's an amazing technology that's moving forward, and I'm glad for the opportunities that you've been able to have and to bring it forward to many other people, and for them to see these potential possibilities.
I'm sure there's a lot of places for continued improvement and growth, just as you pointed out. And at the same time, there are many factors about where technology is going and ways it may amplify disparity gaps in our communities. From your experience, what are some of the areas we need to address to improve access, quality of life, maximize social well-being for members of our communities with neurologic disorders or neurodegenerative disorders through technology?

Jennifer Wexton:
I definitely share those fears. It is an important part of the conversation as to how we are going to ensure that the benefits of technology are felt by everyone, and they help lift people up, not push people further apart. When I first heard my AI voice, I thought, "I guess AI isn't entirely evil, just mostly." And the truth is that this is a really great example of how technology is and should be used for good.
Part of my experience discovering this opportunity to create an AI voice model and get my voice back is now helping others to do the same. The problem is that many people facing the kind of health challenge that I am don't know this could be possible until it's too late. I was fortunate as a public figure to have many hours of recorded audio ready and available to use to make the AI.
By spreading the word and connecting people to opportunities like I had, it is my hope that we can make this technology do more good for more people, and companies like ElevenLabs have taken notice, starting programs specifically to reach out to people with health challenges, primarily ALS and atypical parkinsonisms, both of which have marked and devastating effects on patients' ability to speak, and help them make use of these impressive kinds of tools.
I received an email out of the blue from a college professor who wanted to let me know how hearing my story changed his life. He suffered a brain injury when he fell off a ladder. His speech was deteriorating, and he was concerned that he would no longer be able to continue doing the job he loved. Fortunately, he had hours of recordings of his lectures. So when he saw my story and contacted ElevenLabs, they were happy and able to make him an AI version of his voice free of charge. He is still teaching and uses ElevenLabs' AI voice program to type brief statements and engage with his students in real time. Success stories like his remind me why I keep speaking out.

Dr. Correa:
That's amazing, and I really hope many more people have these kinds of opportunities to not only build and strengthen their voice, but to help the technology and access improve. I really appreciate you sharing that story of the member that contacted you. Now, you've also previously described how, for you, PSP is a very unique experience in progression compared to some of the other stories and information you'd heard about Parkinson's and other neurodegenerative diseases.
And actually, you've described it as Parkinson's on steroids. Each person's experience with both PSP and Parkinson's are unique, but from what you have learned from the community living with PSP, in your own experience, what are some specific ways that PSP differs from Parkinson's disease?

Jennifer Wexton:
I describe PSP as Parkinson's on steroids because that's exactly how it has felt like my symptoms are progressing, and to help explain a relatively unknown disease to the people who saw and interacted with me and had watched my health decline. Many of the actual symptoms are the same, challenges with balance, motor skills, eventually difficulty with speech volume and clarity.
That's often why it is misdiagnosed or originally diagnosed as Parkinson's, as it was in my case. But PSP, as the name implies, progresses more quickly. For me, in just over a year, I went from running two to three miles, two to three mornings a week to using walking poles, to relying on a walker to get around. My speech also was impacted just as quickly, and I now use this AI text-to-speech technology whenever I want to be understood.
PSP also does not respond well to traditional Parkinson's treatments and has no known cure. As I mentioned, when I first began receiving levodopa for what my doctors and I believe was Parkinson's, it noticeably alleviated the intensity of my symptoms. I still take it now, but it has a much less robust effect, and I require more medication to get the same response.
Because PSP progresses so rapidly, robbing you of your ability to move and speak freely, and the prognosis is so dire, it can be a very lonely disease. Many of the people battling PSP do not have the kind of public profile I've had and are not afforded the platform to speak out about what they're facing. Since sharing my story, I've received so many heartfelt messages, and it has not only encouraged me to continue with my advocacy, but also been a source of comfort and strength on a personal level as well. And so, I want anyone out there who may be listening, who is facing a battle like this or has a loved one with PSP, you are not alone, and your story matters. And one day, we will find a cure for this terrible disease.

Dr. Correa:
I'm sure many people share and appreciate your words of support and the hope that you're bringing towards this advocacy work. Now, many people with neurologic disorders, and you, have shared frustrations about being underestimated due to their speech difficulties or differences in speech patterns. How have you adapted to elevate and advocate for your own voice?

Jennifer Wexton:
You're right. There have definitely been challenging moments where people who I interact with don't know how to respond to how PSP has affected my appearance, my movement, and my speech. I've had situations where well-meaning people have mistaken my physical decline for a cognitive one, and spoken to me like I was a child. Even on a couple occasions, a colleague in Congress introduced themselves to me, and I'm just like, "Yeah. Of course I know who you are. We've worked together for six years." They don't immediately recognize me beyond what PSP has done to me, but I'm still the same me on the inside.
And if given the chance and some patience for me to type something out on my iPad to play through text to speech, they'll see that my wit, my intellect, and, for sure, my sense of humor are all intact. An amazing tool I have to advocate for myself and others like me is this AI voice as well as the platform I've had in Congress, and I've been grateful for the opportunities like this one to share my story and the struggle that many Americans are facing with diseases like PSP.
I definitely don't wake up every morning thinking, "Gosh, I can't wait to go out and be the public face of this horrible, debilitating disease." But I know that I likely would not have been afforded the opportunity for interviews like this and others I've done if I were not already an established public figure. That's why I have felt so strongly about getting my voice out there at every opportunity I can so that I can talk about PSP and what we need to do to fight it.

Dr. Correa:
And do you think the strategies that could be implemented to promote inclusivity and ensure that individuals with communication barriers are treated with respect and recognized for their cognitive abilities? I mean, I think it's great that you've been able to demonstrate it and show with speech-to-text and assistive technology, but what are some other ways that we can broaden this throughout our community?

Jennifer Wexton:
There's lots of work to be done to help normalize and remove barriers for people who rely on alternative and augmentative communication, AAC, devices like my AI voice. When I first began using assistive tech in Congress, I was the first person ever to do so while speaking on the House floor, and that required special exceptions to the rules to allow me to do so.
I'm hopeful that after seeing how important AAC was for me to continue doing my job fully, despite my health challenges, this will become the rule rather than the exception. I think what is most important to promoting inclusivity is demonstrating how and why people might have communication barriers and rely on alternative ways of communication.
As I just spoke about, I've had well-meaning people mistake my speaking challenges and my slowed movements for a cognitive decline, and that's clearly not the case. But people have these preconceived notions and unfortunately don't always take an extra moment to consider how we, although in nontraditional ways, can still be part of the conversation.
I can't speak like I used to, and that means I can't interject in conversations easily or banter back and forth as well as I could before, but I've still got a lot to say, and I'm going to make sure I'm heard by anyone who will take the time to listen. I have some initial introductory statements pre-programmed into my AAC device, which have helped me when I'm, for example, trying to place an order at the deli counter or meet with a geek to get my Apple Watch fixed, such as, "I can't speak due to a medical condition, so I use this device to talk for me. I hear and understand fine, so you can speak normally to me. But please be patient, because it can take a while for me to type my thoughts."
And they help disarm some people who would otherwise have been impatient and possibly rude, because once people understand that I'm not just messing with them, they shift into the be-nice-to-the-disabled-lady attitude, which is fine with me. It's kind of an ongoing joke in my family that when I comment on a topic at dinner, it is likely two or three topics ago. But I'd rather be heard late, and I like to think that Andrew and our kids would rather hear from me a little after the initial discussion than not to have me participate in the conversation at all. Just because my voice is now being heard through a device, doesn't make it any less mine or any less important to hear.

Dr. Correa:
Absolutely, and we truly appreciate the work that you've been doing to raise your voice and advocacy. And you've done a lot of work for advocacy within healthcare research well beyond assistive speech devices or augmented and alternative communication or AAC, like you've described, and that includes alongside advocacy organizations, scientists, and physician leaders. You worked as a key role in the National Plan to End Parkinson's Act. What are some of the key parts of this act and how they may impact the lives and individuals and families that are affected by Parkinson's and other related neurologic conditions?

Jennifer Wexton:
Getting the National Plan to End Parkinson's Act passed into law was one of my proudest achievements in Congress. It is the most significant action Congress has ever taken to tackle Parkinson's and related neurodegenerative conditions like PSP, multisystem atrophy, MSA, and Lewy body dementia. And it really was a matter of using every arrow in my quiver and pulling out all the stops and whatever other metaphor you want to use in my and my team's efforts to get it passed.
I worked alongside the bipartisan sponsors of the bill in the House, Representatives Gus Bilirakis, a Republican from Florida, and Paul Tonko, a Democrat from New York. I approached them after my diagnosis, because I wanted to find ways that I could champion policy that would help step up our efforts to better understand, diagnose, treat, and ultimately cure diseases like mine.
I shared my story with my colleagues at times, unashamed to play the I'm-dying-and-this-is-a-top-priority-for-me card to help get this important bill across the finish line. It was touch and go for a while there when the bill was temporarily waylaid by egos and politics, two things that too often kill good bills in Congress.
Fortunately, I was able to prevail upon the parties to return to the negotiating table and help them reach a bipartisan compromise, something we see too infrequently in Congress. The National Plan directs the secretary of the Department of Health and Human Services to assemble all relevant stakeholders from across all federal agencies and with the input of scientists, doctors, patients, caregivers, academics, industry experts, and the nonprofit community to ramp up our efforts to combat Parkinson's.
Our goal with the bill is to spark new research and collaboration in fighting Parkinson's. Our challenge now is ensuring that we secure continued resources to support this new initiative and make it as successful as possible. I believe that this has the potential to save and change lives. I may not see the benefits of this landmark law, but it is my hope that one day and one day soon, no family has to go through what mine has faced.

Dr. Correa:
I share that hope with you and for so many other people. We hope in many ways, alongside other advocacy organizations, that by curing one neurologic condition, we may have the potential to cure many. And along with that, beyond the National Plan to End Parkinson's Act, can you expand on that and share with us the importance of the HEALTHY BRAINS Act and other legislative opportunities that may address the challenges of atypical Parkinson's alongside other neurologic disorders?

Jennifer Wexton:
Absolutely. The National Plan to End Parkinson's Act was a major step in our fight against Parkinson's and related diseases, but not the final step. As I went through my own long, stressful process of getting a diagnosis, I had many questions about what these symptoms could mean, how I could get better, and one of the greatest and most frustrating questions, "How did this happen? Why me?" That's a very relatable question for many people in my position, but one which very rarely has a clear answer. Not much is clear as to why these kinds of neurodegenerative diseases affect the people they do in the ways that they do.
Some genetics may be involved, but there's also evidence out there that supports environmental factors contributing to neurodegenerative illnesses. And so, if our goal is to help people dealing with these illnesses, the best way we can do that is by trying to prevent them from happening in the first place. Legislation that I introduced, the HEALTHY BRAINS Act, would help try to do just that.
The HEALTHY BRAINS Act would facilitate new efforts through the National Institutes of Health to look at potential environmental factors that could contribute to neurodegenerative diseases, not just Parkinson's and PSP, but conditions like Alzheimer's, ALS, and MS. While I'm no longer in Congress to carry this legislation forward, we had support from both Democrats and Republicans for its introduction. And so, I'm hopeful that this continues to be a priority so we can help prevent these disastrous diseases and help millions of Americans.

Dr. Correa:
We have so much work to do together as a community. And as we look forward to that broader community, for people and families living with PSP, it can be rare to connect with others living with this condition. Do you have any specific words of wisdom, advice, encouragement for those affected by PSP now as someone who is sharing in that journey?

Jennifer Wexton:
You're right, Daniel. And as I said earlier, it can be a very lonely disease, but you are not alone. What has been the greatest source of strength for me throughout all of this is having a system of support surrounding me. The reality is, with PSP, there's a lot I can't do on my own anymore, like drive myself to doctor's appointments or make phone calls.
I'm fortunate to have such caring family and friends who have been there for me and helped pitch in with that sort of thing, and there are resources and support networks out there for people battling PSP. Organizations like CurePSP, which I've worked closely with, have resources dedicated to helping people going through this unimaginably challenging process and also connect with others, including support groups for people with PSP and other groups for their family members and caregivers.
In my own community in Northern Virginia, my family and I have gotten to know other PSP families through an annual walk that CurePSP supports, and they have events and community building opportunities like that all across the country.

Dr. Correa:
I'm glad you bring up the importance of both family and connecting with others, and that your family has had the opportunity to connect and to learn together with you. Now, are there specific things that your family members or adult sons have found particularly helpful as they navigate this process?

Jennifer Wexton:
A PSP diagnosis really does affect the entire family. I know it has mine. I'm fortunate to have such an amazing husband, Andrew, who has not only been great with me through this, but great with our two boys as well. Just as I've been able to connect with others battling PSP, they've been able to get to know families who can relate to their challenges as well, and our whole family has been able to take part in advocacy events together, which means a lot to me personally, of course, and has allowed them to get comfort and strength as well. I'm just so grateful and proud of the three of them for being with me in this fight.

Dr. Correa:
Often our biggest strengths can be standing together. Thank you, Representative Wexton. We truly appreciate your time and dedication to the community, your willingness and patience to work with us in the production of this episode so that we could help maximize the impact of your voice with augmented and alternative communication tools. Now, for our listeners, stay tuned for our discussion with Dr. Janis Miyasaki so we can continue to learn more together about PSP and some of the challenges and potential hope there is in moving forward, along with the discussion about what matters and what goals we have together with our families.

Jennifer Wexton:
I truly appreciate your time and dedication to the community, Daniel. Thank you so much for having me.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
It's truly astonishing what Representative Wexton has been able to organize both with her speech and thoughts with this adaptive voice technology. And now, I'd really like to take us to a expert discussion with Dr. Janis Miyasaki. She's a movement disorder specialist in Canada and worked for many years as a community neurologist until 1999, when she joined the academic neurology field in Toronto. And then in 2007, she became one of the first neurologists to lead a palliative care program for those living with movement disorders in the world.
She now practices at the University of Alberta in Canada, where she is the head of the Department of Clinical Neurosciences, and co-directs the neuropalliative care clinic there. She also works as a researcher and mentor for future scientists and leaders helping us in the field expand our knowledge about movement disorders, physician wellness, and health equity. Janis, thank you so much for joining us here today.

Dr. Miyasaki:
Thank you, Dan, for having me.

Dr. Correa:
Now, some of our listeners, the most dedicated, may remember that back in 2023, we had an episode that we worked on together with the CurePSP organization, highlighting a musician and guitarist Jeff Golub's story of PSP, and was shared with us by his wife, Audrey Stafford. And in that episode, we got to hear some about progressive supranuclear palsy, or PSP, from Dr. Alexander Pantelyat.
But I wanted to continue the discussion and, of course, hear more and hear some about your experience. So we appreciate it. Now, maybe we can just start with this acronym, PSP, progressive supranuclear palsy. Help us all understand a little bit more about what that complex word is since it's not a common condition.

Dr. Miyasaki:
No, it's not. And in fact, when it was first described at the University of Toronto, some commentators said, "This must be a Canadian illness that's in the water." And then people began seeing it more and more. And so, progressive supranuclear palsy gives information to the doctors. It means it is a progressive condition, and it involves the descending pathways that control the eyes, but also all the facial musculature.
And so, some of what Representative Wexler has experienced are very characteristic of the condition. So one is that she was initially diagnosed with Parkinson's disease, and that is because many patients start off with stiffness and slowness. And so, the characteristic condition with stiffness and slowness is Parkinson's disease, but over time, it becomes clear that the person is not responding to levodopa in the way we expect. So people with Parkinson's disease will often say, within days to weeks, "It's like the clock has been turned back five years."
People with progressive supranuclear palsy often don't experience that degree of benefit. The other is that they often have falls at the time of presentation or shortly after presentation, and this is not what we expect in Parkinson's disease. So people with Parkinson's disease should start to have walking problems and falls about five years or longer after they first present to their family doctor or neurologist.
And then something that is particular for PSP is the difficulty with eye movements. So very avid readers or people who have to read a lot for their profession, "I can't track the line and then find my place when I go back." This is a very common complaint. And obviously, for someone who loves to read, it is a big loss to have that difficulty.

Dr. Correa:
So you mentioned the Parkinson's as a condition, the Parkinson's Foundation. Some people might wonder, is this an atypical type of Parkinson's, or what makes this a unique and specific condition?

Dr. Miyasaki:
So it is thought of as a Parkinson-plus condition, which means, to a physician's mind, it means the person has that parkinsonian phenotype of slow and stiff and maybe walking problems, and they have additional features, often very disabling for the person. And unfortunately, we do not have a lot of means to relieve that kind of suffering.
So it is thought of as a Parkinson-plus condition, but the pathology is different. And so, for physicians, it just makes it easy for us to sort of think, "Does this person still have Parkinson's?" Every year, your neurologist should be thinking, "Do I still think this is Parkinson's?" And if your patient is not responding in that typical way to say, "I think there might be something else going on," and to do other tests, if necessary, or to do a more complete physical exam in order to help that person, because that diagnostic clarity is so important to our patients and families.
When they look at the support group and they say, "Oh, I'm not like the rest of the support group," it's a very isolating feeling. So we need to do our best as physicians to get an accurate diagnosis, and for the patients, for them to inform the neurologist, "Hey, I don't think I look like the other people in my support group," or "I feel there are some things that I'm experiencing that don't resonate with what I've read about Parkinson's disease."

Dr. Correa:
So as with many conditions, we say, "You see one case or one individual. You've seen one individual that each person is unique." And even if with an established diagnosis of Parkinson's and a person having their own unique expression of what that means for them, it's still important to reevaluate each year, and as things progress, always taking a look at and considering, "Is this the expected progression for them if the new symptoms they're having are things that can come on as added challenges or comorbidities or if it's maybe suggesting to something else?"
And I think I heard you say that the changes that occur to the brain, the pathology is different with PSP, and that it involves different structures in the brain that are different from the typical pattern that is thought of with Parkinson's, but it is also a progressive condition. Correct?

Dr. Miyasaki:
Yes. And in movement disorders, virtually all the conditions I deal with are progressive. And, of course, that's our holy grail, to stop that progression and, until then, to relieve suffering of our patients. And you mentioned other parts of the brain that are affected. So, for instance, people with PSP might have heightened emotions. So this is called a pseudobulbar affect. And so, they may laugh and cry inappropriately.
Even discussing this with families can be helpful, because sometimes in a situation, I'll give you an example. A patient was at a family member's funeral, and because of the heightened emotion, he began to laugh, and the family was very upset. And when I explained to them, "This is part of his condition. He was feeling intensely the loss, but it came out inappropriately as laughter and it's beyond his control," they really understood and they said, "Oh, this helps us, because sometimes he laughs when the grandchildren fall down and hurt themselves, but now I understand he's feeling sad about it. It's not that he thinks it's funny." And we can help that.

Dr. Correa:
So some people may experience or have experienced someone in their family or a friend who may laugh inappropriately with a stressor or when something makes them sad, but in many cases, when there's not an injury to the brain or a process that's impairing that connection, it might be that they don't yet have a fully developed coping skill for that stressor. But you're saying, in this situation, it's actually a dysfunction in the loop or the connection of emotion that they're feeling with their outward expression.

Dr. Miyasaki:
That's correct, Dan. It is part of the biology of PSP and the parts of the brain that it affects.

Dr. Correa:
And as you said, it's so important to discuss all the different components of what a person might experience and the symptoms they're having with their families. But how do you bring up, at this very beginning or once it becomes clear, this diagnosis, this scope, and the potential for progression over time with them and their families?

Dr. Miyasaki:
That's an excellent question, because it depends on the individual. Some people like all the information. They want a lot of information, and that helps them cope and prepare. Other people say, "I really want the information that I need for maybe the next few months in between our visits." And other people say, "I can't handle it right now. There's other stuff going on. I need to tell my relative or my spouse, and they'll be my ears."
And I think we need to respect that. We have gone so far in patient-centered care, and sometimes we infer that means we must cram as much information as humanly possible into their heads, but not everyone wants that or needs it. And so, we have to think about, "What will serve this individual in front of me now?"

Dr. Correa:
Yeah. I think of it sometimes as having a discussion about the possible doors to open and letting them tell me or in discussion with the family what doors we want to open right now and saying, "If you look up online and you find information about this and you want to discuss it, or as things progress, there are more doors to talk about, whether it's related to mental health or otherwise, and let's come back and speak about that at that point."

Dr. Miyasaki:
And I think it also means the person and the family also need to do some introspection about what is their style. So some people say, "I want to know absolutely everything." And then as you're giving the information, it becomes clear this is too much information. And so, I think people need to reflect maybe the style that they've had in the past is not the style of information gathering that they need now, and dealing with a condition that affects how you move, how you speak, and how you process information is so integral to our identity as a person.
It's not the usual situation. It's not, "I have an infection in my hand. I need an antibiotic. I want to know all the side effects." This is a bit something that is very threatening to people's identity. And so, for our patients and families to be kind to themselves too, to not judge how they are responding to information and say, "Oh my God, why am I in so much denial?" But to recognize maybe that's what they need right now.

Dr. Correa:
And you brought up how the way we speak and move are so integral to who we are or how we see ourselves and connect with others, and Representative Wexton has found a way to continue some of her advocacy work to share the power of what she cares about, who she is and her voice with computer-assisted devices, text-to-speech functions, and an AI voice. So on your experience across many individuals with neurodegenerative disorders, including PSP, what has been some of your experience with these adaptive and rehabilitative tools for speech and for mobility?

Dr. Miyasaki:
I have found it a little challenging, I have to say, for the patients, because it requires a great deal of effort to set up a system, and they often concentrate on it to such a degree. And we have to recognize that when we're talking about voice amplification methods, that, often in PSP, their voice is also slurred and not clear. And so, when we amplify their voice, we just get a louder, unclear voice, which is frustrating to the person.
I have had patients who have done the quick and fast iPad where they program certain phrases that they're going to use frequently, and then over time, their manual dexterity and their ability to look at the iPad and locate where they need to go becomes more and more restricted, and it may cause frustration. So I think if the person and the family have the energy and the resources to initiate it, it's a great thing, and we have to also recognize that many people don't have the energy and the resources to initiate it.
And then how can they still have a joyful life? How can they still connect with their family? I think because of the more rapid progression for PSP, teams would be well-counseled to try and help their patients with legacy-making to think about, while they are still able, what are the things they want to say? What is important for them that has been left unsaid, and who are the people that they want to have around them? And if necessary, to repair a relationship.
We are all guilty of it, especially doctors. We see it every day. And yet, how many times do we stop and think about that, and think about what is important. What is going to be important if I die tomorrow? I think that's an important lesson for us all. And if it's important when I die, why am I not doing more of it now?

Dr. Correa:
Yeah. It's an important start and reflection, and really where we're spending our time and our voice and our attention. Now, on the mobility side with PSP and some of the other degenerative movement disorders, are there some places that you really encourage people to start with in terms of safety issues or just concerns at the beginning while they're also spending time with their family, really reflecting on what they need to communicate?

Dr. Miyasaki:
Well, again, this is a matter of means. So some people have the means to move. And often, when I start the discussion about moving, it takes about two years for a couple or family to get to the place where they're ready to actually enact a move. And so, having a multilevel home is not ideal. If you have a multilevel home and there's a main floor full bathroom, that is great, but even talking about these things and putting them in place is challenging.
And so, in my province, we have home care, is available regardless of your prognosis, and we just say home safety assessment. An occupational therapist goes to the home and assesses the home for any safety devices that could be put in, things that they can modify, like getting rid of throw rugs, and tries to prepare them for at least the next year or so in terms of the equipment that they will need. I was not taught this in neurology residency or my fellowship. It highlights the need to reach out to have a team, and to involve your team members early on, because the initial conversation might be, "Oh, I don't need that now." But over time, they'll say, "Oh, I remember. The occupational therapist mentioned this."
And also, for all our patients with a neurodegenerative illness, there's more and more evidence, mostly in Parkinson's and Alzheimer's, that exercise is important, but to balance that, because some patients, as they become more impaired in their mobility, they feel guilty that they're not doing the same exercise regimen, and to say, "Well, what can you do? Well, why don't we change it?" Have the physiotherapist see you and say, "Now you have to be seated." And so, we don't want to set up unreasonable expectations for our patients that make them feel bad about themselves when they're still trying so hard.

Dr. Correa:
That's such a good point. And you talked about, with several of these different services, both the technology, the supportive services, the ability to change things at home, that there are real differences within our communities about who is able to do those things or even structurally have the support for it.
Now, you mentioned that you do some work with the Parkinson's Foundation in the United States. As Representative Wexton referred to, there's been an initiative and effort that was passed, National Plan to End Parkinson's. How important do you think those kinds of initiatives and efforts are, or are they just another legislative action that's happening in government?

Dr. Miyasaki:
Well, I hope it's not just another legislative action. We have the opinion in the neurodegenerative space that when we figure out the mechanism for one condition, we will have a way forward for all of them. And so, to say, "Oh, but it's just Parkinson's. It's not like PSP and corticobasal degeneration or FTD." We are wanting to join our forces together, because realistically, all of these conditions are considered rare disorders.
And so, if we're all putting our hands up saying that, "We need more research," it's going to be less effective than joining together and saying, "We need to do something," because it's impacting the lives of our patients and our families, and it's going to just escalate over time if the epidemiology is correct. And so, I think that it is absolutely the right way to approach advocacy, is to join together so that we have more power. It's so easy to think about when you have a heart attack. Of course, it's important to have cardiology and a cardiovascular surgeon.
We fail to recognize that what people are truly afraid of is not necessarily death. They're afraid of losing their mind. And when we gather together as a group and realize that we are so pathetically funded in terms of research, in terms of our hospitals and our ambulatory clinics compared to other programs that are bright and shiny, then we can have more power to bring to light the plight of our patients and families and to just create that moral imperative that we have to do better.

Dr. Correa:
Can individuals and family members join their voice with the Parkinson's Foundation and other foundations to share the importance that they feel with, whether it's American or Canadian legislatures, for these kinds of research and work?

Dr. Miyasaki:
I absolutely believe in the power of the individual. Otherwise, I wouldn't have kept persisting with my desire to promote neuropalliative care, and I think that all the organizations are looking for patients and families to join them, because, of course, we can say what we think is important, but it's the patient and families who need to say, "This is my experience. This is what is lacking. I wish we had known X when we started this journey," or "This resource would have been so helpful for us."
And so, absolutely, I think there is power in, again, speaking your truth. And I recognize that for many family members, it's challenging, because they feel they're spending all their time and effort to support their loved one, and I totally recognize that. But even if you can go on the website and write, "Here's what I'm having. Here's what I'm experiencing," or write to your representative and say, "I see big, shiny buildings for other conditions. I don't see a big, shiny building for people with neurologic conditions, and why is that?"

Dr. Correa:
Now, you mentioned neuropalliative care. We said that you co-direct a clinic there at University of Alberta. What is that, and why is it important that there's a neurologic conditions lens to the idea of palliative care?

Dr. Miyasaki:
Well, I first got introduced to neuropalliative care at the American Academy of Neurology annual meeting, and Dr. Jerry Kurent was giving a seminar, and it was just this wonderful approach about addressing what was important to patients and never abandoning patients. So I've heard too many times from trainees and colleagues, "There's nothing more we can do for you." That's a devastating thing to hear, because if we don't know what the heck is going on, how are they supposed to figure out how to go forward?

Dr. Correa:
Yeah.

Dr. Miyasaki:
Palliative care physicians are often primary care doctors who have one year in the United States, and in Canada, one year or two years of extra training. They have very limited exposure to neurology, because you may not know this, but palliative care is mostly, almost universally, housed in cancer institutes. And, of course, they have a big volume of patients, but our patients... Every doctor feels, "My patients are special. My patients are special."
And I feel that there are symptoms and courses that are very unique in neurology, and that having a neurologist involved in palliative care is really crucial, because we can provide that extra insight for palliative care doctors, and there wasn't an ability for me to train as a palliative care physician when I was going through.
And so, I've always paired with a palliative care doctor, and I feel that they have elevated my practice, and I hope that they feel I've elevated their practice, and then that palliative care doctor goes forth and teaches other palliative care physicians. So instead of saying, "I don't know what to do with these patients. They're scary, because they're so complicated," now they say, "I have a resource who's a palliative care doctor who I trust."
And this has really changed how palliative care has been provided in every city I've been in. At first, palliative care doctors would not accept neurology patients. And over time, through building trust and viewing them as partners, they are not someone I push my patient to when I don't know what to do. I always say, "Text me about any patient you have questions about, and I'll see if I can provide some insight."
So they have trust that there's going to be help, but also, they have a palliative care doctor who says, "These patients suffer more than cancer patients over a longer period of time." And I think that has been really crucial at every clinical setting I've been in. And now, throughout the United States, there are so many neurologists who are double-certified in neurology and palliative care. So I think it's just wonderful to see that change over the 20 years that I've been involved in it.

Dr. Correa:
I mean, it's so great that there's so much more attention to it, but I do think it's also one of those areas where there's still so much need. Now, you had mentioned, and I wanted to move from those thoughts to joy, and what are some of the ways that you've learned from the community that you have served of how persons with neurodegenerative disorders have found peace and joy in their time?

Dr. Miyasaki:
Well, one is for us to explicitly discuss with them, "What does a good day look like to you?" and "What brings you joy?" And even for the family members, because they're focused on the physical and sometimes cognitive and behavioral symptoms, they haven't stopped to think about that for a long time.

Dr. Correa:
Yeah.

Dr. Miyasaki:
And when we bring it up, they'll say, "Oh, he loves jazz." And I said, "Well, can you have jazz playing?" And they go, "Oh, why didn't I think of that?" So I think it is for us to call out that that can be as equally impactful for their loved one and for themselves, if they are the patient, as anything that we can do in medicine, to specifically also note things that are joyful and, despite their condition, to practice gratitude. Every day, no matter how much suffering there is, there are moments of gratitude, moments of peace, and to notice them so that they give us more resilience to go forward, because there is that easing off even if it is for a moment.

Dr. Correa:
And I wonder for the families also, there's a lot that they're managing, and in times, that may be themselves dark. How do you find or suggest that they seek purpose as being another important aspect about their quality of life and their own brain health? Maybe you have an example of a way that a person supporting someone with PSP or another disorder found purpose in their experience.

Dr. Miyasaki:
I think it's truly challenging, because one spouse said to me, "Yeah. Look, if they tell me one more time that I should go for a massage, I'll just shoot myself." Okay. Noted. I will not mention that. But one is to ask for help. Commonly, the spouses will say to me, "Oh, my children are so busy." They live within blocks of the person, but they will not ask for help.
And I often reflect back to them, "Okay. While your child was having chickenpox and you had to give them soothing oatmeal baths, and when they had their multiple viral illnesses and you stayed up with them so they could breathe and be comfortable, did you ever say, 'I got my own life to lead. I can't do this'?" And they say, "No." "Do you think that maybe your adult children might find it meaningful to help you in this way?"
And so, I think it is important for people to develop that community, and also a sounding board, because if it is a husband and wife, even if that person was your sounding board for everything, I think you cannot feel comfortable telling them how you might feel or how you're tired today, but you can tell one of your friends, and to think about your own health. It is a challenge.
Many of my care partners will say, "I haven't been to the doctor in a long time," or when they come to hospital, not my patient, but another patient with a similar condition, and they'll say, "When was the last time you slept through the night?" That is such a meaningful question, because you'll be surprised the number of care partners who will say, "I can't recall." And for them to take a step back and see that they are kind of drowning too, and that if they can't cope, then the person that they love and they're devoted to will not be able to stay at home.
And so, what can they put in place? And, of course, there are the financial considerations of if you cannot cope and they need to be in a skilled nursing facility, and can you afford it? Can you afford a place that's close to your home that has the kind of atmosphere that you would wish for? It's such a tough thing. The other thing I would say is a lot of spouses say to me, "I promised they would never go to a nursing home." And I say, "But you promised that without really knowing what was going to come. And if you asked him or her five years ago this scenario and what they would hope for you, what would they say?"
There's a huge amount of guilt for care partners in asking for help and admitting they're not coping well, and yet describing feelings that are concerning and obviously not healthy. And even when people say, "One of us is going to be dead," they cannot acknowledge things are out of control now, and we try to help them with that, and we try to be proactive, and sometimes we're successful, and sometimes we're not.

Dr. Correa:
Well, Dr. Miyasaki, thank you so much for taking the time, helping us take some time also to reflect on many things that are important for all of us beyond, whether or not you live with someone or have a neurodegenerative disorder like PSP, and for everything that you're doing to help individuals find connection, community, voice, joy, and purpose.

Dr. Miyasaki:
Thank you, Dan.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org, and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online, @NeuroDrCorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina, and online, @KatyPetersMDPhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope, together, we can take steps to better brain health and each thrive with our own abilities every day.

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Advocacy and Assistive Technology with Former Representative Jennifer Wexton

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