Dan Keller 0:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host Dan Keller.
At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives.
Anyone can pitch in to raise awareness of Parkinson's disease, and the more awareness there is, the better the chances that people with PD will get diagnosed and benefit from treatments earlier.
Parkinson's Foundation ambassadors provide outreach and education. Today, we're hearing from two young ambassadors, graduate students Bryan Geenen and Prajakti Barot.
Bryan has a family history of P.D. and Prajakti, who became involved through Bryan, now plans to go to medical school and become a neurologist. They filled me in on the details of what drew them to become ambassadors.
Bryan Geenen 1:16
The reason I got involved was because my grandma and my father both have Parkinson's disease. My grandma has, you know, had it my whole life. My dad got diagnosed when I was in high school with early onset, and I've just been around it a ton and seen the toll it can take over time, and then seeing what it does, you know, in the short term as well for somebody who just got diagnosed, and always looking for a reason to get involved in things, and I couldn't think of a better reason why than to support my family.
Prajakti Barot 1:47
Brian told me that he contacted the Parkinson's Foundation, and they were thinking about organizing an annual awareness walk, and I was like, "Wow, that is incredible to be a part of an organization like that and be involved in organizing a walk." Since I've never done anything like that, it all started. But then my personal career reason, professional reason, if that makes sense, was because I wanted to get involved in the social work and make connections.
Dan Keller 2:21
So it sounds, Brian, like you had a fair bit of experience like this before you got involved with the Parkinson's Foundation. But was your entree to this Prajakti through Brian and seeing what was going on in his family?
Prajakti Barot 2:38
Yes, I've never been around anybody with Parkinson's, but I've only learned about it in school. Never really knew about it in detail. But then Brian told me that there is an organization, and then we went all in, and now we're just learning more and more.
Dan Keller 2:56
Was there anything that surprised you when you first started learning about it and seeing other people involved with it?
Prajakti Barot 3:05
From my end, especially when we went to the summit in Henderson, the leadership summit. I was really surprised that Brian and I were the youngest, even in the staff or as a volunteer. We were the youngest of everybody. I thought there would be a lot of people like Brian and I being a part of an organization and helping people. So, just that age that was involved with the foundation was really surprising to me.
Bryan Geenen 3:35
Something that surprised me around being in the foundation, I think it was the rate at which it grows is obviously interesting. You know, we see it at you know greater volumes now, and more and more people are coming out and talking about it. But I think it was also there isn't quite a cure, and there isn't like a lot of things to do. And that was kind of my whole introduction to Parkinson's was what can we do to delay it, right? There's no cure. How do we continue to help people with Parkinson's continue to grow as people and lead a great life? And I think once we were able to join the foundation and understand a little bit more, you know, the resources, the call lines, all of those things really surprised me.
Prajakti Barot 4:21
I agree. I have to agree with you. Yeah, and then when we meet, once we start getting more involved and familiar with all that the organization provides, we start talking to people and just seeing people like getting excited about knowing that there are more resources out there for them to educate themselves and lean onto was also something that touched my heart, especially when I went to one dance class with Kristyn up in Monument at the YMCA, I just saw all these people that were so relieved and so excited, even to understand and learn and have so many questions, and that actually touched my heart. And I was like, wow. This is beyond just organizing the walk. You're helping people like in a very different manner, in a very impactful way.
Bryan Geenen 5:08
And I think we're also surprised, you know, you going in the medical field that Parkinson's isn't always super like talked about or understood from all levels. I think that was super interesting too to see that the whole information fact sheet when you go to a hospital or a safety guide, a lot of doctors aren't sure of how to treat people with Parkinson's. My dad had an interaction like that when he was in the hospital, where it's some people just don't know how to deal with Parkinson's even at the medical level.
Prajakti Barot 5:36
I agree. I mean, as I said before, meeting you or I'm being familiar with the organization. All I knew about Parkinson's was from a textbook or whatever briefly they talk about, but I've never had that personal experience because it's so not talked about in the culture where I come from. It's just seen as an old person's disease. You just shake, and then you just get immobile. That's how it's perceived. So, I think just being around the foundation, being around these people, I've also gained like a perspective about what do I want to do, being involved, and how I want to help and improve the resources and the education around it. I really want us young people to be a part of this as much as they can because if we're aware, we can help our family members, we can help our neighbors, whoever. As a young healthcare professional, the sooner you get yourself familiar with such a disease, I think it's the better it is for you when you go out there and get a specialization, maybe in a movement disorder or something. So, yeah,
Dan Keller 6:47
Your family is from India, and we had other podcasts on cultural outreach, informing communities that may think it's just an elderly white man's disease. So, what can you do in that respect?
Prajakti Barot 7:04
Oh, absolutely. That I really want to change a little bit of perspective around it because I have two ideologies. One, it is that we just think it's a white male disease because the education, the resources, the support has only been around that culture and doesn't necessarily translate in other different languages. So I really want to enforce or emphasize the need to bring the supporting materials and resources in different languages, so we can reach out to those different cultures and help them conquer, however they can, the disease and the illness, and the second thing I think is that even if there is resources around this, I think just spreading awareness in different cultures is really important at this point because I think we have a lot of data around white culture, but I don't think we have enough data to support any kind of study and research different cultures, and we know that PD is not just environmental; it's genetic also. And having that data will help us tremendously. In India, being the most populated country, I think just having awareness resources and data from that background will, I think, help us tremendously in fighting the problem or the disease.
Dan Keller 8:30
Are there skills or perspectives that younger Parkinson's Foundation ambassadors can bring that might not be obvious to older people?
Prajakti Barot 8:42
I really think the enthusiasm and the excitement and the creativity, or the way you can bend things around new forms of technology as a young person, I think is some skill sets younger generations have or are more familiar with.
Bryan Geenen 9:00
I'd jump into like when we go to some of these events. You know, we do tend to be the youngest people, or you know, people are surprised like, oh, you're with, you know, you're you're trying to raise awareness on Parkinson's. It's just bringing a lot of life and energy, and using those new forms of technology that we can, you know, do our best to continue on the work that the generations before us, you know, built already, but we've really enjoyed it. You know, I think the biggest thing as young people is when you can bring in a perspective of, you know, I'm I don't have Parkinson's. I might, you know, down the road have it, but I know people with Parkinson's, and that's not usually who's doing the speaking. It's the people next to the individuals with Parkinson's, or it's the people with Parkinson's themselves.
Prajakti Barot 9:49
I think as young people, they can bring a newer, fresher perspective on how to fight the disease, or even come up with alternative exercise forms, or help them improve their mood and boost their mood because we know depression and anxiety are some of the symptoms. And I think with our enthusiasm as young people, we can do that. We can help the cause. We can make it better for everybody.
Bryan Geenen 10:13
Just to finish that last point, as young people who don't have it, you know, being able to talk about how it affects us, how we can work with our parents, our grandparents, and kind of continue to help other youth discuss these sort of topics, or help people with Parkinson's to talk to their kid, provide that experience of hey, you know, I went through this in high school, I went through this in college, I went through this when I was younger with my grandma, my father, my mother, whoever it is, you know being able to provide that I think is super valuable. We've already talked to a few people in the foundation itself and talked about hey I'm not sure how to speak to my kids sometimes about
Prajakti Barot 10:50
it.
Bryan Geenen 10:50
Correct. How can we speak to the youth that hey this isn't just you know for elderly people to worry about. It's a family member. It's an uncle. It's a best friend. It can be anybody, and being able to deal with that as a young person, I think, is important.
Prajakti Barot 11:05
Yeah, and I think why to wait until you're impacted by it. Parkinson's is becoming more widespread. Why wait until you're impacted, right? Let's just make ourselves also more prepared, more aware, more educated around it. That way, we can maybe help ourselves prevent it, even or when it comes to kind of our better stage to help yourself or others that are impacted by it.
Bryan Geenen 11:33
Or when you're going into med school and trying to pick things or trying to learn, you know, you've talked about some of the classes we might be able to bring
Prajakti Barot 11:41
absolutely. You could just do so much if you're a young person. If you're involved with it, you can actually change the world around it. And I'm not saying that the people that are involved right now cannot, but I think that the sooner we have more people, different mindsets, different perspectives being participating, volunteering in a cause like this, the quicker we can reach to the end goal, which is finding a cure.
Dan Keller 12:10
We've been talking about looking at people who are older and have Parkinson's, but do you ever run into anyone with young onset Parkinson's disease, and do they relate better to you than they would somebody in their 60s or 70s?
Bryan Geenen 12:27
Yeah, that's a good question. I would say I've met people that can relate to me a little bit. You know, we're on the younger side, a little bit more enthusiastic, or still working. And I don't know. That feels like more of a question for those individuals, but I've felt like I've been able to help to inspire. I hope I can, or we can, bring a little bit of life to people and go. Hey, you know, we're not necessarily we don't have it, but we truly care about you. You know, we just met you, but you know, I see my dad. I hear my grandma when people talk, and I can relate to those people and their families and their partners and what they're going through through my family's experiences.
Dan Keller 13:14
What one message would you want people to get to take away from this conversation that is fairly practical in their life?
Prajakti Barot 13:23
From my perspective, I joined this not only because I knew somebody, but also for my career. And practically, if you don't have anyone with Parkinson's around you, I say still join because the satisfaction you get from helping other people is tremendous, and or seeing other people smile and finding that belief is amazing. And professionally, I think the connections that you can make, the leadership skills and qualities that you can get, are very very helpful as you grow. You put yourselves out there in the real world, performing big tasks and having responsibilities like organizing a walk or fundraising. You just learn so much. You just grow up a little bit faster. You realize how the world works, how everything is supposed to be, how to be humble and kind and supportive to everybody.
Bryan Geenen 14:23
The message that I would want to give to this community is: this isn't a reason to, you know, not live or to not continue to grow or, you know, find your people. I think being able to go to those events and talk to people and just interact, and you know this isn't a death sentence. Although you know sometimes we talk so much about how it impacts you and all the things you have to be careful of, and the research, and you know these things are so scary. And it's like these people, our family, it's our friends, it's our community, it's our teacher, our best friend, even at some point. This is not something to be scared of. If we can all work together and continue to grow community events, and yes, it's great to learn, and it's great to fundraise, but it's great to get people together and talk and grow and learn about things and how to be safe, and that's community building.
Bryan Geenen 15:17
I think that's the biggest thing that I would want to tell people, and especially like I can't relate exactly to someone with Parkinson's, but I can you know talk to their daughter, I can talk to their son, I can talk to the whoever it is in their life, and say, hey, this is not something to be scared of, you know, just because grandma isn't able to talk all the time or isn't mobile doesn't make her any different, you know. She's just working against this disease, and how can we continue to take that in stride and provide a great community for everybody? I think is the message that we want to portray.
Prajakti Barot 15:52
Absolutely, and I would really encourage younger generation to be involved in such causes. Staff, like let's not wait. Let's just jump all into it. Like take this seriously. Why do we wait until it's on us and then you go out there, right? Why? Just just enjoy. Let's just enjoy this and get best out of it for others and for ourselves in whatever way it would be for you by engaging and talking with other people, or by making connections, or by conducting a research project—you know—that's just do it.
Bryan Geenen 16:28
Once you're able to get those volunteers in, you know, if those are collegiate students, if those are high school students, they take that back to their classroom. They take that back, you know, to projects that they're working on, and they start. They get so
Prajakti Barot 16:40
creative. I mean, young the young generation these days, the people even younger than us, like they're so creative and so smart. So that's why I have like this. That's why I have this vision that like the more we have, maybe the closer we get to finding a cure or somehow putting a full stop to progression. You know, I mean, help people. You can do it as a community. You don't have to separate it from age or cultures, but we can do it. Come together as one in like this.
Dan Keller 17:09
Very good. Thank you. I appreciate it. Parkinson's Foundation ambassadors are trained volunteers who raise awareness, educate local communities, and share what resources the foundation can provide. They engage in community outreach and represent the foundation at local events and community groups. If you would like to consider becoming an ambassador, go to our website at Parkinson.org/Volunteer and fill out an interest form. As always, our PD information specialist can answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's, you can reach them at 1-800-4PD-INFO. If you'd like to leave feedback on this episode or to let us know what other topics you'd like us to cover, visit Parkinson.org/Feedback. Be sure to subscribe and rate us on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Till then, for more information and resources, visit Parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.
