← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG Navigating the Path Episode 7: CurePSP
00:35:12
In this episode, host Ken Vinacco interviews Jessica Shurer, CurePSP’s Director of Clinical Affairs and Advocacy, to share how the organization is leading initiatives to expand support, outreach, and education for individuals with PSP,
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- [00:00]
A
This is for informational and educational purposes only. It does not constitute and should not be used as a substitute for medical advice, diagnosis, rehabilitation, or treatment. Patients and other members of the general public should always seek the advice of a qualified healthcare professional regarding personal health and medical conditions. Welcome to 4D Deep Dive into Degenerative Diseases, Gaining insights through casual and amusing clinical conversations welcome to 4D, a podcast brought to you by the Degenerative Diseases Special Interest Group of the Academy of Neurologic Physical Therapy, a component of apta. I'm Ken Vanacco, a physical therapist in the Outpatient Neuro Clinic at Brown University Health and on the Podcast Committee of the DD sig. Welcome to Navigating the Path, our series where we introduce our listeners to an organization that supports people with neurodegenerative diseases to learn more about the services and support they provide. To understand a little bit more about the resources available to people living with progressive supranuclear palsy, I'm joined today by Jessica Shore, Director of Clinical affairs and Advocacy for CURE psp. Welcome Jessica. Tell us a bit more about yourself and your role at CurePSP.
- [01:23]
B
Thank you all so much for having me. So I've been at CurePSP for a little over four years at this point. I'll tell you more about my role, but just to share a little bit of my background too. So I'm actually a clinical social worker by background and I worked for almost 10 years at UNC Chapel Hill Movement Disorder center. So outpatient neurology. I was hired primarily as a clinical social worker and center coordinator to we were Parkinson's foundation center of Excellence. I was hired primarily to work with people with Parkinson's disease, but very early on a lot of my caseload became people with the atypical Parkinsonian conditions because even though they're they're rare population, they are so complex and high needs that they really needed a lot more support. So I became very specialized in those diseases and started building a lot of programs and resources for them at our center and in North Carolina. So wanted to share that just to say I've been working with this community for a long time and I think I have this unique perspective of having been immersed in the Parkinson's world too and sort of seeing how we talk to and about the Parkinson's community and approach resources and care for them and how that looks so different for people with the atypical Parkinsonian conditions. When I was at unc, I also ran the specialty interdisciplinary Parkinson's clinic and then a few years in started the Atypical Parkinsonism Interdisciplinary Clinic. So I worked very closely for all that time, therapists as well as other rehab therapists and really understood very well the importance of that, that teamwork and you know, approaching things from all these different perspectives and again understanding how we approach Parkinson's a little bit differently from these other diseases. So I brought a lot of that with me to cure PSP. And I actually joined the CurePSP board of directors for about a year and a half as well before I was hired into this role in October of 2021.
- [03:47]
A
Oh that, that is amazing. And we appreciate that so much. And you have such valuable background on like working with these individuals and their families.
- [04:00]
B
So all I know that you asked a question earlier about my, my role here and so I can, I can take us back to that. The primary hat that I wear is leading our Centers of Care medical network. So it is currently 38 mostly academic medical institutions across the United States and Canada. We have expanded that. I think we've added 10 centers since I started here four years ago and we are about to expand it again, actually looking to expand beyond North America for the first time. So within that we have four academic working groups. We have a social work special interest group which we co facilitate with Mission msa. We have published a number of papers and led a number of collaborative projects. I also have a collaborative grant mechanism too to look at novel approaches to person centered care and access to care and medical education. And that medical network is really leading the charge when it comes to improving diagnosis and treatment for these diseases. I use them in many different ways. All of our webinars and our family conferences and our educational resources. I'm always drawing from the expertise across our medical network.
- [05:31]
A
Yeah, I definitely want to dive into those resources too.
- [05:35]
B
Yeah. Happy to tell you more about that. I'll just say really quickly and then I'll turn it to you. Is that so that's the main hat I wear is leading this medical network. And then I also lead a team that manages all of our support, outreach and education initiatives and resources here. And I'm currently leading all of our legislative and public policy advocacy as well of which has. There's been a lot for that, like a lot happening with that over the past couple of years.
- [06:10]
A
Yeah, especially recently. Yeah. Big hat to. To put on. That's. Yeah, definitely a challenge.
- [06:18]
B
I'll tell you that. At CURE psp our mission is to raise awareness, build community, improve care and find a cure for progress. Supranuclear palsy or PSP corticobasal degeneration or cbd, often also called corticobasal syndrome or cbs and multiple system atrophy, or msa. So the three what are often referred to as atypical Parkinsonian conditions, although that's sort of a term that we're just thinking more about just because that's not always something that resonates with our community. And I, it, I struggle with thinking about the. A lot of times these diseases get kind of lost in Parkinson's disease. And not all of these diseases always present with Parkinson's. But you know, in the movement disorders world, that's currently what they're referred to as.
- [07:14]
A
Is there like a better term, you think?
- [07:17]
B
That's a good question. I think that's the struggle is no one's landed on one yet. But you know, I started in this field over a dozen years ago. They were called Parkinson's plus diseases. And I think that was really problematic because it made it sound like Parkinson's plus something else. But some they're different pathology, even though overlapping pathology. And so it was shift in the right direction with atypical Parkinsonian conditions or atypical Parkinsonism. But I think that's still a little bit of a misnomer.
- [07:50]
A
Right.
- [07:50]
B
First of all, however, a single person is going to identify with their disease and share it with people and explain it to people, I think is most important. And we should always meet people with that. But then when it comes to organizations or clinicians and healthcare professionals, just being mindful of how there's not a one size fits all for how we talk about the diseases and we need to just keep naming them individually, recognizing the overlaps of the, the challenges and the needs there, but naming them individually for awareness purposes. So that, that's sort of my approach to it.
- [08:32]
A
So just to go back to, I guess, sort of the role that the medical organizations you, you mentioned and trying to help with diagnosis of these individuals early, which I'm sure you know is a challenge early on because there can be similarities to other more common, let's say Parkinsonisms. But what do you think is helpful, I guess, in that initial diagnosis of these individuals? And how can, can physical therapists maybe be more helpful in the diagnosis of these different conditions with psp, CBD and msa, respectively.
- [09:11]
B
Yeah, so I'll back up and I'll throw a couple little stats at you because I always think it's really important for us to know exactly what we're talking about here. So these diseases progress about three times faster than Parkinson's disease do. And we also tend to rely currently on mostly Parkinson's medications to treat these diseases, even though a lot of people with them don't have as robust of a benefit as we seen we expect to see in Parkinson's disease, which can actually be a red flag for diagnosing this. And because of that, because we also don't have like, focus ultrasound and, and duopa and deep brain stimulation and like all these other things that we've had for so long for Parkinson's disease, we, we really just have to rely on symptomatic management right now. And unfortunately, they progress on average from symptom onset to death in about seven to eight years. And it takes still on average two and a half to three years just to get the right clinical diagnosis. Because we do not have accurate diagnostic biomarkers for those three diseases right now. There's a lot going on in the research space for that, which is great. So we're moving in that right direction. But because of that and because most health care professionals not that familiar with these diseases, even a lot of neurologists or a lot of allied health clinicians, it's sort of like the Occam razors principle. Like you're moving slowly and you're talking a little differently and you might have some postural instability. Let's call it Parkinson's disease. So over, I think it's about 60% of people are initially diagnosed with Parkinson's disease. So then it takes, yeah, up to three years to the correct clinical diagnosis. Which means by the time someone gets that diagnosis, they might be a third of the way through their entire disease journey. And so then from there, things progress really fast and it tends to be this sort of like, whack a mole of, of symptoms. There's a lot of differences. And we see in Parkinson's around, like, needing to speed up decisions for advanced care planning and safety and independence and, you know, management in the home and care partner needs and all of that. All that to say that when it comes to diagnosis, number one, it'd be great to have some really good biomarkers so we can give people a more definitive diagnosis earlier on. Number two is educating all different kinds of healthcare professionals. So neurologists, that's cognitive neurologists to movement disorder specialists, to ataxia specialists, but also general neurologists and neurology apps. But I think it's just as important to educate allied health clinicians and especially rehab therapists, because here's what I tend to see. Physical therapists and I Could say the same for occupational therapists and speech language pathologists. You all are really good at picking up on what is not Parkinson's disease. So, like, once a PT is trained in Parkinson's and understands Parkinson's and might become even specialized in Parkinson's, even if they never got the same formal training in psp, CBD, and msa, or haven't seen that many of them yet in their career, they're very good at being like, you referred this person to me for Parkinson's, but this doesn't look like Parkinson's. Like, what I usually see. And you all are also seeing them more frequently than neurologists are.
- [13:11]
A
Yeah, yeah, I think you're spot on there because we end up seeing these people more frequently, and I think that's of benefit because then we pick up on maybe trends that maybe couldn't have been seen in a single neurology visit that they had, and then that can just further help to. To streamline the diagnosis or like you said, communicate back to neurology on some of the findings we're seeing that are just inconsistent with the typical Parkinson, like, presentation. And of course, you saw that in your clinical role, I'm sure, a lot in the multidisciplinary care teams you're on.
- [13:47]
B
Yeah, all of that. But also, like, you guys are so good at picking up the little nuances across the diseases too. Like, you know, their postural instability is. Is one thing, but, like, what. What kind are we looking at? Or, you know, is you all might be seeing the retropulsion that a neurologist isn't picking up on in, like, a single p every six months, you know, or like, you're seeing some of the ataxia kind of signs of MSA or, you know, bluing of the fingers and MSA that, like, might not be showing up on neurologic exam and standard of care, unfortunately, because these diseases often get lumped under Parkinson's and they shouldn't, is to be seen every six or so months by a neurologist when it should really be every three to four months, and you all are seeing them more frequently in between. So I also think that when it comes to pts, playing a role in early and accurate diagnosis is to, you know, trust your own judgment with that. And if you see something that just doesn't feel right or look like what you would expect for someone who is maybe a year and a half into symptoms of Parkinson's disease, to trust that and to go back to the referring provider, to share your clinical expertise, to say, Like, I often see X, Y and Z signs and symptoms in my folks with psp. Is that a, a diagnosis you all have considered? You might want to get Mr. Smith back into your clinic or something like that.
- [15:24]
A
I've, I've had that conversation just personally with some neurologists or apps and feel like generally they're really open to anything that I'm seeing and receptive. So it takes a team, right? Takes a group of individuals to help care for these people. So as long as you're highlighting your findings, right. And just speaking to like objectively what you're seeing, I think they're really appreciative of that usually and goes such a long way for helping treat these different types of diagnoses.
- [15:55]
B
Yeah, totally. And I also think part of it is like your exam and what you're seeing in observing someone and how they're responding to your plan of care too. But I think some of it also comes out in like the assessment tools that you're choosing to use because that gives you a little bit more objective data. I think the challenge with these diseases is we haven't done a good job yet from a research perspective of looking at how we apply certain outcome measures from Parkinson's disease to psp, CBD and msa. But I've learned from working with my PTS and other rehab therapists over the years that you all know so well of what looks different, you know, and which test is more appropriate for person with a certain diagnosis or like, what you would expect on Parkinson's is not going to be what it looks like in psp. So a couple of things that come to mind. People with PSP can really struggle. I mean, you can argue this with Parkinson's too, but I think I especially see in PSP with dual tasking, like the cognitive tug, you know, that's where a lot of times someone might look okay until you have them start counting backwards or they might have the rocket sign trying to get up from the chair that you're not going to see in Parkinson's disease. Or if you take the ABC scale because of the impulsivity and often lack of insight that we see with PSP, they almost always put 100% confidence in walking on ice. And I'm like, I'm not even 100% confident walking on ice. That like just your assessment tools and like how you become really well versed and how you use utilize them with the atypical Parkinsonism kind of folks.
- [17:47]
A
And yeah, I think all of the insights you have and of course fantastic knowledge of a lot of the physical therapy, evaluation and treatment strategies is it speaks to one, your multidisciplinary role that you had and also sort of what you bring to cure psp. One thing I wanted to ask about though is, you know, for those providers who, let's say they have really good knowledge of Parkinson disease but are looking for that additional knowledge of PSP and MSA and cbd, what kind of resources are available for for those providers through CurePSP?
- [18:26]
B
I'm so glad that you asked that. So I will add that there's some really good Parkinson's disease specific trainings and programs that have come out over the past 10 plus years. There's always something Parkinson's specific, sometimes with like one little talk thrown in there on atypical Parkinsonism. And so I always felt like that wasn't enough. But I'm not a rehab therapist. I was really validated to learn from the rehab therapist not only that I worked with at UNC, but now I work with rehab therapists from 38 medical centers across the country and into Canada and beyond. And I resoundingly heard from them saying we want more professional skills and formal training in these diseases so that they don't just have to rely as much on anecdotal experiences and lessons learned from hands on work over the years. So I approached the Parkinson's Foundation a couple of years ago and I asked them if they would want to partner with us. This thing that we're talking about of like you understand Parkinson's now, now let's layer on top of that learning about these. So we last year we rolled out three different accredited continuing ed programs with them. So One is a three part podcast series, One is a 90 minute online course and both of those are free. And then the third thing that we did last year was an in person team training on atypical Parkinson's that was two days long. And we're hoping to repeat that third part in the future. But for now the podcast and the online course live on their website. You can also connect that through our website in the health care professional section. They are free. They are accredited for physical therapists, occupational therapists, speech language pathologists, physicians, apps, clinical social workers, nurses and psychologists. So the podcast series is sort of like overview of what are these diseases and like the importance of multidisciplinary care. And I do have a physical and occupational therapist who are interviewed as part of that. And then the online course are all video didactics with a deeper dive into these diseases and distinguishing them from Parkinson's disease.
- [21:10]
A
Yeah.
- [21:11]
B
And then the other thing that I want to make sure I highlight is this past July, CurePSP partnered with the Shirley Ryan Ability Lab to create a webinar specifically for rehabilitation therapists on rehabilitation implications of psp, CBD and msa. And we are planning on working with them again in 2026 on a webinar series where we can get a little bit deeper into each of the diseases and also each of the disciplines.
- [21:45]
A
Wow. There's a lot of resources I need to check out, that's for sure. And the one for Shirley Ryan, that webinar series, was that recorded and is that on Shirley Ryan's website?
- [21:56]
B
Oh, good question. Yes, that is archived and that is available for, for watching and for continuing education credits.
- [22:02]
A
That's great. Are there other caregiver specific type of resources through CurePSP?
- [22:10]
B
Yeah, yeah. I just, I realized now I didn't really get too far into our different programs and resources for the community. So we have a lot from an education standpoint, we have an educational support series for people who are newly diagnosed with PSP or CBD or msa. We offer that online. Every other month we have a webinar series. It's usually about every other month or so. And just this past year we started offering webinars in Spanish as well. And so I'm always trying to draw from the expertise in our medical network and focusing on topics that our community is telling us is important. So, so like what is palliative care or you know, navigating changing identity and family roles or what is a wheelchair evaluation and what should I be aware of when it, when it comes to choosing adaptive equipment and assistive devices. And all of those get archived on our YouTube channel. And then we also have some kind of educational workshop that's a little bit longer every year. And then we also have what's called, called the spring Community weekend where that's in person once a year I partner with one of our centers of care that. In 2026 it will be in Los Angeles in early May partnering with Cedar Sinai Medical Center. And that is a like 2 1/2 ish day thing where it's an educational summit and a community celebration as well as a 5k or a 1 mile walk if you prefer to do that. And then we have all these different digital and printed educational materials too for people to get overviews of the diseases or learn a little bit more like topic specific information about the diseases. And then as far as support resources go, I'm sure we're getting some educational stuff. But support resources we have a really robust peer supporter network. So these are individuals who have lived experience with one of the diseases. Usually they're people who were care partners and person passed away and they want to use those years of experience to guide people going through it. Now we have over 15 virtual international support groups. Those are audience specific. So we have some that are specifically for care partners. Like one for any kind of care partner. We have one for women care partners. We have one for PSA care partners, one for MSA care partners, one for adult children. The list goes on. And then we also have a bunch that are for people diagnosed again like one specifically for cbd, one specifically for msa, one for PSP. And then we have some that are open to different kinds of folks. So flying solo is people without care partners. We have one of the ones that I co facilitate is anyone impacted? So whether you're a person diagnosed or a friend or a sister or. And then we have two bereavement support groups as well. We also have the quality of life respite grant where we are able to give a grant of 100 hours of professional in home care to families caring for someone with psp, CBD or msa. So that way the family can get a little bit of extra support in the home. Or care partners can have some more time too attend to their needs. Whether it's more, you know, self care kind of needs or you know, their own medical appointments or grocery shopping or a trip or something like that.
- [26:07]
A
Those are such valuable resources. 1 like just support resources, right for individuals living with the condition and their care partners. But again also those financial resources because we know they're can be strains at this complex medical condition. So, so great that the CurePSP is able to offer those. Where do folks find those? Like are those outlined on the website pretty clearly like where they can locate the support groups, those grants?
- [26:36]
B
Yeah, I hope that they are. We're always trying to improve our website. We're always adding to things but when you go to our website there's sort of three main sections at the top where it says I want to learn and I want to learn it. Then it breaks it down into like about the diseases and are you newly diagnosed? Our YouTube page is on there. Learning about research is on there. Resources for healthcare professionals is on that section as well. And then our other main section is I need support. And that's where we get into our bereavement support, our support groups, our centers of care, our respite program. Brain donation assistance is something else that we offer and then I want to help. Or different ways for people to give or to volunteer or to get involved in our legislative and public policy advocacy.
- [27:29]
A
Yeah, that's amazing. And the different, like pathways ultimately that you could go down depending on the individual or the caregiver's specific needs. I mean, the fact that it's tailored in such a way, I think probably speaks volumes to what CurePSP mission is and to help these individuals and their families and a very challenging diagnosis that they could be given.
- [27:53]
B
Thank you. We're trying. We always wish we could do more. Right. When you, when you are diagnosed with something that you've likely never heard of, like PSP or one of these other diseases, that is a vulnerable experience enough, it's really confusing. You've likely gone through many layers of tests and providers and sometimes other diagnoses and sometimes trialing different medications and all of that. And then when you finally find healthcare, a healthcare team who understands that disease and can also point you in the right direction for more support and sense of community and to learn more that can make all the difference for your disease experience. Like, you know, handing someone, whether it's, I think a lot of times we, we think about just neurologists or clinical social workers who work with neurologists as playing that role. But physical therapists are just as important. If you have educational materials in your clinics that are disease specific and you could say like, have you ever heard of this organization? Or I have these great booklets that CurePSP sent me or did you know that this organization has these support groups? They might not have ever heard that from their neurologists, but you all can play that role too. And oh, I guess I should mention that, that any healthcare professional can order our materials for your clinics. We'll send that to you for free. So we have a healthcare professional packet that we send that has like our support group flyers, our, what we call our some answers booklets, medical alert wallet cards. We have a booklet that we currently call what every physical therapist, occupational therapist, speech therapist and clinical social workers should know about psp, CBD and msa. That a lot of times it's the patients and families that will actually bring that to their rehab teams to say, I want you to learn about my diagnosis. But we're actually in the middle of updating that right now with the original authors as well as a number of new authors who are specialized in these diseases to make it even more practical and robust. And so that's something that we can also send to clinics, but is also all this is available on our website as well.
- [30:18]
A
That's great. So stay tuned for the updated version of that booklet. Now I can already think of someone I'm seeing tomorrow that I can share these resources with and will definitely be ordering some of these booklets for our clinic. I can imagine that many neurologic pts and probably pts as a whole who may see someone with psp, MSA or CBD would find these invaluable. So thank you so much for sharing these resources.
- [30:51]
B
Thanks for asking about them and being interested and if you ever have more questions, please reach out. We're, we're here to, you know, I think about our community. It's not just people diagnosed and families. It's people who are caring more broadly for this community. So it's, it's people like you who are working with them every day. And we're, we're here to work with you all and learn from you all and, you know, support you as much as we can too.
- [31:24]
A
Before I let you go, we do have one last question for you.
- [31:28]
B
Okay, hit me.
- [31:30]
A
Tradition here on the DD sig where we ask each of our guests what they're doing when they're, they're not working.
- [31:38]
B
So first of all, exercise is really important to me. And I'm not even like, I'm not just saying that because I feel like I have to, but it really is. So I have, I have a child. I guess I should say that too. And he, he's seven. He keeps us pretty busy because seven year olds have a lot more energy than you do when you're in your late 30s, early 40s, like my husband and I are. But he, you know, when I first had him, I got really into exercise afterwards because it was one of the only ways that I felt like I could have a sense of control over my body. And that's been really important to me for my identity ever since. So I'm really into bar, specifically in the past few years. I also really enjoy antiquing because I'm a nerd and I, I've been getting my child into antiquing too. And I, I travel a lot for my job, like a lot. And so I always try to carve in something non work and fun in every place I go to. So I always try to find like a cool museum or something historical or a botanical garden. I really enjoy all of that.
- [32:51]
A
Wow. You definitely keep yourself busy, Jessica. So thank you so much for sharing a little bit of your time with us tonight. It was so nice to have you on.
- [33:00]
B
Truly, it was a pleasure and hope to talk to you guys again soon.
- [33:06]
A
Thanks for joining us and special thanks to our guest today, Jessica Shore from CurePSP. This podcast was produced and edited by the ANPT Degenerative Diseases Special Interest Group Podcast team. For more information on this SIG and ANPT, visit www.neuropt.org. our podcast team includes Sara Zoller, Christina Burke, Parm Padgett, Shannon Brown, Madison Catalano, Aisha Sonani, and I'm Ken Vanako. Thanks to Jimmy McKay for providing music. Please share this episode with a colleague Today. The Academy of Neurologic Physical Therapy and its collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication. The views or opinions expressed are those of the individual creators and do not necessarily represent the position of the Academy of Neurologic Physical Therapy. It'll make it to the bloopers. Don't worry.
- [34:07]
B
Okay, in full transparency. Literally right before the zoom started, I hit my wrist on my cactus. And so if you I know it's dangerous work. You know what? This could be like a workplace suing workers. Come for sure. Neuro pgs.
- [34:29]
A
We don't do this.
- [34:31]
B
Do you not work? You don't do like the cactus wrist situation.
- [34:36]
A
We have a lack of cacti up here in the New England northeast region. Is this like one of those tiny cactus or is it like.
- [34:43]
B
It's like see my little. Well, it's very cute. I know cute cactus. But it's dangerous. Sorry it ignore like act delete everything I just said because it was jump. We have. Oh, I should have mentioned this earlier.
- [35:01]
A
Ken State cactus.
- [35:04]
B
Be careful of the cactus. You're dangerous.
- [35:07]
A
I've heard Tada.