← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG: Navigating the Path Episode 2: The Parkinson’s Foundation
00:27:24
In this episode, host Ken Vinacco sits down with special guest Donna Sperlakis to explore the wide range of resources and support services offered by the Parkinson’s Foundation. Together, they dive into the educational tools, community programs,
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- [00:00]
Ken Bonacco
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 the apta. I'm Ken Bonacco, 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 new series where each month we introduce our listeners to an organization that supports people with neurodegenerative diseases and their caregivers. In honor of April being Parkinson Awareness Month, I'm excited to be here with Donna Sperlakis, Senior Director of Community Engagement from the Parkinson Foundation. Donna, feel free to introduce yourself and tell us a little bit more about your role at the Parkinson S Foundation.
- [01:23]
Donna Sperlakis
Sure. Hi. Thanks for having me. I'm excited to be here. So, yeah, I'm, as the senior Director of Community Engagement, I oversee our community education programming. So that's our webinars, our in person education, and I work with our digital and print publications team really closely as well. So I've been here about six years with the foundation. So.
- [01:47]
Ken Bonacco
That's great. That's great. Sounds like you probably know a little bit about the behind the scenes happening at the Parkinson Foundation.
- [01:54]
Donna Sperlakis
A little bit. A little bit. I think. Yeah.
- [01:58]
Ken Bonacco
Yeah, I think it's helpful just to start with you telling us a bit more about some of the most widely used resources available as part of the PD Foundation.
- [02:10]
Donna Sperlakis
Sure. Well, first of all, just to start out, our mission is to make lives better for people with Parkinson's. And so we really do that through research, through. Through care, and through education and empowerment. So all of our resources and our tools are really kind of built around those three pillars, if you will. So just to highlight some of our key initiatives and resources that we have. You know, thinking about education, I know when I didn't work at the foundation, our print resources were always my go to. And so one of the things we pride ourselves on is our educational tools that we have for the community and also for professionals. So we really hope that, you know, professionals come to our website and that they download our resources and that they're able to share them with their patients and the people that they serve. So that's one of the things that we're really, you know, proud of is those educational tools that we have, those patient education resources.
- [03:10]
Ken Bonacco
I use all the time in practice, like some of the best, I think, infographics on exercise for people with Parkinson's and speaking from a physical therapist perspective, that is the most like, clear cut ones. And it's really patient friendly.
- [03:26]
Donna Sperlakis
Yeah, that exercise infographic came out of a fitness initiative that we had. And so a team worked really hard to put all that together and, you know, really put in the time behind, you know, the best practice for exercise for people with Parkinson's. So that's actually one of our most popular resources, not just for professionals, but, but for patients as well. I mean, that's one of the questions that we get all the time is how much exercise should I do and what types of exercises should I do. And so this is just a really simple tool that people can use. And honestly, since that was created, we've built some other resources kind of along the same vein just because it has been so popular.
- [04:09]
Ken Bonacco
Yeah, I also love, just to get on a small tangent on that infographic, I love that there is a Spanish version as well. I work where like there's a lot of Spanish speaking individuals. So that has just been such a powerful tool across like population.
- [04:27]
Donna Sperlakis
So that's great to hear. In the last year or so, we've really worked hard to expand our Spanish resources as well. And you know, just in the last year we Translated over like 50 pages from our website into Spanish. So that's our goal is every year to kind of keep adding, you know, at least 10 more till we get to, to the point where, you know, we have everything in Spanish. That would be fantastic. So yeah, that's great.
- [04:53]
Ken Bonacco
So great. What are some of the other like, newer educational resources that are out there now?
- [05:00]
Donna Sperlakis
So a couple of new ones that, you know, we're really excited about is our care Partner guide. So we used to have a really lengthy book called Caring and Coping. And it was, it was a bit of a beast. A lot of information, a lot of good information, but it could be really overwhelming. So we recently read did that one and created a care partner guide. And as part of the guide we included a lot of different tools, worksheets and things like that that really kind of can help people plan for appointments, plan for, you know, the future, things that are coming up. Each kind of section has links to different resources and so on that can be really helpful for care partners. So that's One of our newer ones as well as our newly diagnosed guide, which is, you know, kind of along that same vein really trying to create tools that are practical and that have really kind of tips that people can use right now. And that's the feedback we get most often is people want to know, well, what can I do now? Like that's great, but what are some, some real tangibles. And so that's really been a goal with these guides is to create a tool that people can actually like open up and use right now.
- [06:09]
Ken Bonacco
Yeah, I feel like there is some great like, like usability of them and like they, they look nice too to patients. Yeah, it's easier to, to digest some information when it's given in such like a great sort of concise format.
- [06:26]
Donna Sperlakis
And you know, another thing that we're doing thinking about patients is we're trying to take a lot of these resources that we've had and create a print friendly version of it so that for people like you or clinicians, they, you know, they got a patient in front of them. If they don't have a printed resource, they can EAS to our website and download a print friendly that's got, you know, fewer pictures and colors and things like that that are much easier and economical to print that you can hand to people right there in the office. So, you know, that's something that we're working on as well. It's a lot of work I can.
- [07:00]
Ken Bonacco
Only imagine and trying to bring in evidence, you know, and good solid foundation on that end of things, but also making it very user friendly is, I can imagine, a challenge.
- [07:12]
Donna Sperlakis
Yeah. Thinking about education too. Just to share. We have a webinar series, I don't know if you're familiar with it, our PD Health at Home webinar series. And that's, you know, we started that during COVID and it was something we thought we were going to stop when we were back to in person. And we found that it just had such an amazing following not just in this country, but even internationally. We've reached more than 65 countries around the world with our PD health at home programming and that includes Mindfulness Mondays. So we have an opportunity on Monday for people to sit and, and be mindful in different ways. Our Wednesdays are webinars, so on just various topics. And then Fridays have been Fitness Fridays. And so we, you know, we've brought in PTs, you know, fitness experts, all kinds of folks who've led those, those Fitness Fridays. And I know those have been a really, you know, great highlight for people so this year in April, we're actually celebrating five years of PD Health at home. So it's, it's a really exciting milestone.
- [08:18]
Ken Bonacco
For that program that is so great. And to be honest, I just found out about this PD Health at Home.
- [08:25]
Donna Sperlakis
Oh really?
- [08:27]
Ken Bonacco
It sounds like there's such great content there and I'm always trying to look for these sort of resources to share with patients that they might find helpful across the wellness and health spectrum. And I love that there's like that Mindfulness Monday, right?
- [08:42]
Donna Sperlakis
Yeah, yeah. And those really, the mindfulness really run the gamut. There's been, you know, they've done yoga, we've done mindfulness of movement. We've done, you know, just things like, you know, kindness of self and acceptance. And it though they're amazing, really amazing programs. And you know, the Fitness Fridays too have evolved. Originally we had them all pre recorded and we decided that we would do one a month live. And so we've started doing live Fitness Fridays, which are really fun and people seem to have enjoyed those as well. So all those are archived? They're archived. You can go to our website and find them back, like way back in the beginning when Joellen Fox, she's a physical therapist that a lot of people are familiar with in the Parkinson's space. She led the first almost year of our Fitness Friday programs and did a really fantastic job like kicking that off.
- [09:35]
Ken Bonacco
So that's great that there's archived videos too. Yeah, some folks, that's the way they like to consume information or like perform exercises is to videos like that. So.
- [09:47]
Donna Sperlakis
Well, yeah, and they can start and stop and you know, if they missed something, wait, what did they say? They can stop it and go back and so yeah, I mean, there's just a lot of things with the recorded with the webinars that we found that people really just appreciate in that format. So. And you know, when you're talking about a population like Parkinson's, it's just a lot more accessible for people to be able to get information that way. So.
- [10:12]
Ken Bonacco
Yeah, that's great. And just going back quickly to some of the print like educational resources. The Hospital Safety Guide is one that some family members have referenced that they've really liked and has been such a great tool for them when they're in that type of situation.
- [10:31]
Donna Sperlakis
Oh, that's so great to hear too. Yeah. So the Hospital Safety Guide is part of our hospital care initiative. And so, you know, one of the things that we know is hospitals are scary for anybody, but especially for people with Parkinson's. There's just a lot of things that can happen when, you know, they go into the hospital and healthcare professionals just don't get a lot of education on Parkinson's and that's just the way it is. And so, you know, the hospital safety guide was kind of born out of that to be just a resource to allow people to advocate for themselves, to make sure that, you know, their healthcare team knows, you know, that they need to have their medications on time and that they need to get up and move, you know, those kinds of things. So we, it used to be a bag and we recreated that recently too to make it a guide. And there's some pull out, tear out resources and things like that within the guide. And it's just that too has just been met with really positive feedback. At first everyone was like, no, we want the bag back. But it's, it's, it's been okay actually having the book. And honestly it's made it a lot easier for us to just give them out to everybody. A lot easier to just share and make sure that they're getting in the hands of more people. So that guide has just a lot of tips for people to help them advocate, you know, a place to put all their medications while they're taking the medications. It has like a symptom checklist for healthcare providers. It's a, another just really great resource. And you know, in addition to the hospital safety guide, we're also working with hospitals across the country just to make sure that health care professionals, you know, within the hospitals have better education on Parkinson's and really just working to make sure that the patients are heard and that they're, you know, being able to have a voice in their loved one's care or their own care.
- [12:24]
Ken Bonacco
Right. Yeah. To have that autonomy and maybe control over their situation, to educate others on their condition and to have a resource that they don't have to describe everything to the health professional is, I think, such a powerful tool.
- [12:38]
Donna Sperlakis
Yeah, that's one of my favorite, I think one of our, my favorite initiatives. Having worked in a hospital before I came to the foundation, you know, I saw kind of what happened when people came in even through the emergency room and just kind of the challenges they went through after they were admitted. And so, yeah, it's one of my favorite initiatives. I think it's so important.
- [12:56]
Ken Bonacco
You sound so passionate about the work that you do. It's fantastic.
- [13:01]
Donna Sperlakis
Yeah, I mean, I, you know, it's, it's honestly, you know, working at the foundation, I would say just an amazing team of people who are truly committed to the cause and are really, I mean we live our mission and so it's, it's great to be a part of an organization like that and part of that team.
- [13:19]
Ken Bonacco
So, yeah, and speaking to educating healthcare professionals more, what are some of the educational resources that exist on the PD foundation website? For sure.
- [13:32]
Donna Sperlakis
Yeah. Our professional education team has really done an amazing job in the last couple years of, you know, really creating a comprehensive listing of educational resources for healthcare professionals. I think the one, the most enduring one and one that's been around for many, many years is our team training. And this is an in person, kind of very intensive several day training where teams from, you know, different. It doesn't have to be a movement disorder clinic, but it could be from, you know, any kind of a clinic that sees people with Parkinson's. And so they come in and we have a great faculty of experts that provide training. The team training over, I think it's like two days for diverse teams. And so it's, you know, it could be PTs, OTs, speech, social workers, the physicians, the clinic nurses. So they can send their whole team in. And it's really a great, it's a great opportunity. And we move those around the country. So those kind of each year they're in a different place. I think in October this year it's in Colorado and they fill up fast. So as soon as like people see them pop up when the next training is, you want to go get in. And we do offer scholarships for those too, I believe from time to time. So sometimes there is support that we can provide for teams and then for people who've gone through our team training, we also have an advanced team training. So it's kind of like just that. It's just that it's the next step up. And so, you know, those are offered in person as well. And you know, in addition to that, we've also created online courses through our online learning lab where, you know, healthcare professionals can take those courses. And we're certified to get ce so they're also able to get continuing education credits for doing those courses.
- [15:24]
Ken Bonacco
So I know there's a cost related to the team training related to sort of those like webinars as well.
- [15:32]
Donna Sperlakis
That's a good question. I'm not sure about the CE if they have to pay for those, but I know we have, we do have courses for nurses. We have PT courses and our learning lab. Can I give the website, can I share where that, that is? That's education.Parkinson.org and that'll take folks directly to our, our lab site where they can find all those different courses.
- [15:56]
Ken Bonacco
Great. I actually had a couple questions regarding are there any funds for like Parkinson's exercise groups or like grants that are available for clinicians to utilize?
- [16:12]
Donna Sperlakis
Yeah, that. Thank you so much for asking that. Yes, we, we have our community grants program and our community grants program funds, you know, over a hundred different community grants every year across the country. You know, in the past, we've given out over a million dollars a year to different groups who offer. Many of them are exercise programs. They might be support services for care partners or you know, a mental health type service. So we get a lot of like, lately we've had like some art therapy, we've had, you know, voice programs, you know, singing programs, drumming circles, some really creative programs that have applied for community grants. And so they apply, they get a grant for a year. It can be seed money or it can be money to expand a current program that they're doing. And we really try to bring grants to areas that don't have a lot of resources. So, you know, we've funded in all 50 states over the years, so we've, we've been able to give money to a lot of new and different groups. So. Yeah, and we use our community grant recipients too, like to support our webinars, to support our in person programming. Our community grant recipients are really engaged and involved with us, you know, on a lot of other levels too. And I think there's a, you know, definite. It benefits both sides. Right. So they get a lot out of it and we get a lot from them too, so.
- [17:39]
Ken Bonacco
Right.
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Donna Sperlakis
Yeah.
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Ken Bonacco
I think I saw grant applications are open like during two different parts of the year, maybe like a January and a June opening.
- [17:48]
Donna Sperlakis
So those open, those open once a year. Actually, I think they're closed now. They just closed. And so we usually announce the next round of recipients in June and then the funding goes from like July to June. And it's, I mean, we get a lot of applications and we have, I mean it's a great process. They're peer reviewed, so we don't, we don't make the decision. They go through a peer review process. They're scored and then like the top scores are the ones that are awarded. So, you know, I feel like it's really fair and.
- [18:21]
Ken Bonacco
Okay, that's good to know.
- [18:23]
Donna Sperlakis
And another. Yeah, I was going to say. And just kind of other grants too. Just kind of thinking about grants. We also fund researchers, so we haven't really talked about research Yet. But we do also fund early career research and we also fund, you know, people who've been doing it for a long time as well. So, you know, we also have opportunity for people to support, you know, some of the work that's being done in the research realm.
- [18:47]
Ken Bonacco
Yeah, yeah. So great to have those resources for, you know, folks who want to be active in the community and helping the PD there. But also, like you're saying, this research community too, sort of advancing research and understanding the disease and treatment for next steps.
- [19:05]
Donna Sperlakis
Right.
- [19:06]
Ken Bonacco
And speaking to research that, you know, the PD Foundation's currently funding, are there any really large scale research projects that PD Foundation?
- [19:17]
Donna Sperlakis
Yeah, actually we have our PD Generation initiative, which is, you know, our. It's a genetic testing. It's a nationwide initiative and actually we've expanded it into Latin America as well. But it offers genetic testing for people with Parkinson's as well as genetic counseling at no cost to the people with Parkinson's. So it's great because not only do they get the testing, but once their results are in, they have the opportunity to sit down with the genetic counselor who walks them through what those results mean. And so, you know, it's. This has been really a huge initiative for the foundation. And, you know, we've already learned a lot of great things.
- [20:02]
Ken Bonacco
Yeah, I know. That's. That's great. I've heard about that study. You might want to bring it up.
- [20:07]
Donna Sperlakis
Yeah. And it's, you know, it's something that people can do from home or they, you know, in an office, you know, at a provider that. That does the testing for us. So.
- [20:17]
Ken Bonacco
And we can kind of like refer folks for that study right on the website.
- [20:21]
Donna Sperlakis
Yeah, they can go to the website and there's a place there where they can sign up to get the test at home or it'll direct them to a local center. That's parkinson.org PD Generation. People can find more information there. But we recently just started testing a whole genome. You know, we. Before we were doing a cheek swab and now it's actually a blood draw. So we have this little Tasso kit. It looks like a red, like the panic button or like the staples button. It kind of looks like that. That just goes on an arm or the leg and you push it down and it does the blood draw and. Very simple, really easy for people to use. Yeah, it's kind of crazy.
- [21:03]
Ken Bonacco
That is cool.
- [21:05]
Donna Sperlakis
Yeah.
- [21:05]
Ken Bonacco
But like you said, people can do it right from home, which is pretty cool.
- [21:08]
Donna Sperlakis
Yeah, exactly. Exactly. So, yeah.
- [21:12]
Ken Bonacco
So I think in, you know, talking about Funding and research and all these things. Like, how do you get the funds? Like, are there live events that people can get involved in?
- [21:23]
Donna Sperlakis
Yeah, absolutely. You know, we have some great signature events that happen out in the community. So you may be familiar with or you've heard of our moving day walks. We also do a revolution event, which is a spinning event that happens every year in February. So we just came off of that when we do those across the country. But the moving day events, if you've ever been to one, it's not just a walk. And I think what they always say, it's. It's an experience. It's a great opportunity to come out and people are moving and, you know, you're. You're with the community. People have their teams, their friends, their co workers, and they come out and. So, yeah, it's a fundraiser, but it's also just a really great opportunity to be with the Parkinson's community in a really meaningful way. You know, beyond money, we have a great Parkinson foundation ambassador program. So if people, you know, are even moved to get involved and. And help support us in different ways, they can become a Parkinson's foundation ambassador. And there's a lot of different things that they can do out in the community. So they can go and speak to support groups. They can, you know, go to health fairs and. And provide resources or just help us at our various events. Our moving day events have a lot of volunte. They can't pull those off without the volunteers and, you know, so. So those are some great opportunities to really kind of, you know, be part of the. The great stuff that we're doing.
- [22:50]
Ken Bonacco
Right. I've definitely seen the community at work at those events. And like you're saying so much more than just a fundraiser. I think it really helps to bring awareness and bring people hope.
- [23:01]
Donna Sperlakis
Yeah.
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Ken Bonacco
With their.
- [23:03]
Donna Sperlakis
So, yeah, for sure.
- [23:04]
Ken Bonacco
Any great events that the PD foundation has out there.
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Donna Sperlakis
Yeah.
- [23:09]
Ken Bonacco
All right, well, I think the last question I have for you here, Donna, is one that we. I know is a tradition here, part of the DD Sig, where we ask each of our guests what they like to do outside of work when you're not doing this fantastic work at the PD Foundation.
- [23:27]
Donna Sperlakis
Wow. What do I like to do? You know, I'm still a professional mom, so I spend a lot of my time with my kids, going to dance competitions with my daughter. You know, we like to bike and walk, walk and, you know, get the dog out she wants. As soon as the weather starts to get nice, she decides that every night after dinner, it's time for a walk. And so it's like she knows. So she keeps us on our toes.
- [23:50]
Ken Bonacco
But at least she waits till the weather's nice. That's nice.
- [23:54]
Donna Sperlakis
Because otherwise we're like, no, it's not happening. So, yeah, no, that's great.
- [24:03]
Ken Bonacco
I'm busy.
- [24:05]
Donna Sperlakis
Yeah. Yep.
- [24:06]
Ken Bonacco
Thank you. Yeah. Thank you for all the work that you do and thank you so much for joining us tonight. Really appreciate it.
- [24:12]
Donna Sperlakis
I loved telling you about the foundation. So thank you.
- [24:17]
Ken Bonacco
Thank you for joining us. Special thanks to our guest today, Donna Sperlakis from the Parkinson foundation, and special thanks to our Parkinson Foundation DD SIG liaison, Natasha Brooks. This podcast was produced and edited by the AMPT Degenerative Diseases Special Interest Group podcast team. For more information on this SIG and ANPT, visit www.neuropt.org. our podcast team includes Sarah Zoller, Christina Burke, Karim Padgett, Jeff Schmidt, Shannon Brown, Skylar Rost, and I'm Ken Vanocco. 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. Thanks to Jimmy McKay for providing music and please share this episode with a colleague. Today.
- [25:20]
Podcast Team Member
I'm gonna be like the whole blooper real. Just myself saying ridiculous things on this. You need to say more ridiculous things, Ken. Farm. Farm's usually good for that.
- [25:29]
Ken Bonacco
Farm is so good at that.
- [25:33]
Podcast Team Member
It's hard to navigate the path.
- [25:36]
Ken Bonacco
That's a good. That's a good way to put it.
- [25:41]
Donna Sperlakis
Well, we can talk about it, but.
- [25:43]
Ken Bonacco
Don'T give away too much.
- [25:51]
Podcast Team Member
No curveballs around here. Usually once in a while.
- [25:54]
Ken Bonacco
But it.
- [25:56]
Donna Sperlakis
So I'm sorry, I'm a little out of sorts today. My computer died at about 3:30 this afternoon. My work computer. So I'm using my husband's computer. And the whole like, last couple hours have been like, oh, no. Yeah, someone sent this to me. I did a webinar a couple years ago and they actually sent us a headset to use. So, yeah, I was like, okay, fancy webinar. I know we're not doing.
- [26:27]
Ken Bonacco
Old Windy Chicago doesn't do it for you.
- [26:30]
Donna Sperlakis
No, but it was snowing yesterday. It's April. What's going on?
- [26:34]
Ken Bonacco
That's not right.
- [26:35]
Donna Sperlakis
So, yeah.
- [26:38]
Podcast Team Member
I feel like you have like an Instagram like, because you're kind of near the Great Lakes. Really likes for lake. Like, that's right.
- [26:45]
Donna Sperlakis
That's right. Like, I have one, but my daughter told me I couldn't post on it. Oh, just please don't post what I was told. So.
- [27:00]
Podcast Team Member
But the dog. The dog should be able to make it on Instagram.
- [27:03]
Donna Sperlakis
Yeah, well, we might always share this.
- [27:07]
Ken Bonacco
Podcast on Instagram too.
- [27:09]
Donna Sperlakis
Yeah, that's right.
- [27:13]
Ken Bonacco
Okay. Gotta put in my podcasting voice.
- [27:18]
Donna Sperlakis
Can we do. Okay.