I'm Not Dead Yet!
A close look at an extraordinary life with Parkinson's Disease. Quirky and irreverent hosts Judy & Travis take a look at this most tragic of events: life with an incurable disease and why it’s important to declare that I'm Not Dead Yet!
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I'm Not Dead Yet!
EP-131 Rollercoaster Moments: How a 12-Year-Old Named Evie Sees Parkinson's
When 12-year-old Evie chose to make Parkinson's disease awareness part of her Bat Mitzvah project, she opened a window into how this condition affects not just patients, but entire families across generations. Her grandfather's diagnosis four years ago became a pivotal moment for their family, but not in the way you might expect.
What emerges in this candid conversation is a refreshing perspective on family communication during health challenges. While many families shield children from difficult medical realities, Evie's family took a different approach. They shared the diagnosis immediately, creating space for questions, conversations, and ultimately, a stronger bond between Evie and her grandfather. "I feel like I can talk to him about it more than I could when I was younger," she explains, demonstrating how transparency has allowed their relationship to deepen rather than become strained.
The wisdom Evie shares belies her young age, particularly when she describes her philosophy on chronic illness: "Diseases are sometimes like roller coasters. You sometimes will go up and be happy, but you don't know when it can go down." This insightful metaphor captures the unpredictable nature of Parkinson's while maintaining space for joy and connection. Her mother Leslie complements this perspective by highlighting how her father's proactive approach to managing his symptoms through specialized exercise, his positive outlook, and his willingness to maintain normal family activities like travel has created a template for resilience.
For families navigating similar terrain, this episode offers both practical insights and emotional reassurance. The conversation touches on finding community support, maintaining normality amid health challenges, and the power of intergenerational communication. Most importantly, it demonstrates that a diagnosis doesn't have to define a person or their relationships. As Evie simply yet powerfully states, "Parkinson's is a disease, but it also shouldn't define somebody." Listen, share, and join our community of supporters by subscribing and following our work at PCLA.
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
www.INDYpodcast.net
Welcome to I'm Not Dead Yet, with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.
Speaker 2:Welcome to the I'm Not Dead Yet podcast. I'm your co-host, Travis Robinson. I was diagnosed with Parkinson's disease at age 35 in 2014.
Speaker 3:And I'm your other co-host, judy Yarris. My husband Sandy had Parkinson's disease for 18 years.
Speaker 2:I was his care partner Today's episode we have the privilege of talking to two ladies who are intimately familiar with Parkinson's, as they are the daughter and granddaughter of a BD patient.
Speaker 3:That's right, travis. We're very fortunate. Today we're doing something a little bit different. Today we're speaking with Leslie Grosvenor and her daughter, evie, and today's interview welcome Evie and Leslie. And today's interview is a little bit different because Evie is actually our main person that we are going to be talking with today, and I just want to say that Evie is 13 and getting ready to do her bat mitzvah, and so this podcast is going to be part of her mitzvah project for her bat mitzvah, and we may have some listeners that don't know any of this or what it means, so maybe one of you could describe this to us and kind of let our listeners know, describe what a bat mitzvah is. Yeah, maybe just give a little bit of background on it so that someone is not familiar with it.
Speaker 4:So a bat mitzvah or bar mitzvah is when a girl or boy is what they call. It called to the Torah and to read from the Torah, which is like the Jewish Bible and we basically read apart from the Torah and after it basically means that you're like, considered a woman or a man so I guess the big burning question is why did you want to do this?
Speaker 3:why did you want to make talking about Parkinson's part of your mitzvah project?
Speaker 4:I think I have since, like my grandpa was diagnosed, was it? I think it was like four years ago, so I always kind of wanted to do it. It means a lot to me.
Speaker 3:I'm guessing from all of our conversations that we've had previously that you and your grandpa are pretty close. Would you say that's okay, so you've had a pretty good relationship with him. Well, that's wonderful. And how has the Parkinson Parkinson's do you feel like it's changed your relationship since you first started, you know, in being a little bit older and and spending more time with him?
Speaker 4:no, I feel like I can talk to him about it more than I could when I was younger, because now I feel like I understand it more, like I like when, like he talks about, like if you notice something different that's going on, like I talk about it with him, or like when he started noticing it, like we talk about it, but I haven't noticed much of a difference.
Speaker 3:You haven't. I'm curious who was the one that told you that your grandpa had Parkinson's? Did he tell you, or did your parents tell you?
Speaker 4:It was basically it was during Zoom, like during COVID, and I came down and my mom was sitting on the couch crying and I didn't know why, and she said that he had Parkinson's and I just had a lot of questions on what it was.
Speaker 3:So, leslie, was it hard for you to be able to express your feelings and and all the emotion that you had, being able to tell your daughter, who was at that time, what nine?
Speaker 1:Yeah.
Speaker 3:Eight, maybe, yeah.
Speaker 1:It was definitely. You know, I've I'm one of the, I'm very close with my both of my parents and I think that my parents are going to live forever and I want them to live forever. So I think, while you know the initial diagnosis was definitely shocking, I remember my brother saying to me you know, it could be so much worse. It's not a cancer diagnosis or you know something that is imminent, um, and I really kind of took that I can be a real like catastrophizer and all aspects of my life and kind of always go to the worst possible place.
Speaker 1:But we've really been able to stay super positive, mostly because my dad is so positive and he is really doing all of the things that he should be doing to stay as healthy as long as possible. He does, you know, boxing class three times a week, specific for Parkinson's patients. He's has a personal trainer and he's walking and golfing and, you know, doing physical therapy and all of the things that I think have really helped him to be his best, given his diagnosis. Um, and so I think we all feel really lucky that um he's putting in so much work to try to, you know, stay as healthy and, um as mobile as possible. He, you know he still loves to travel and we get to go with them a lot of the time. So, um, we really feel fortunate that he's, you know, putting in all the effort that it takes for him to continue to be with all of us and, you know, especially with them. I think the kids really help to keep him young as well.
Speaker 3:Absolutely so when you go on trips, evie, like, do you feel like you're, do you ever have anxiety about going on a trip with him, or do ever have anxiety about going on a trip with him, or do you feel pretty comfortable going on a trip with him at this point?
Speaker 4:I feel comfortable. I think because I know if something were to ever happen, all of us would definitely help and if we're ever going downstairs or doing something that could risk him getting hurt, we always help him. And I don't get worried because, like my mom said, he's positive and I feel like he'll be fine.
Speaker 3:Yeah, and let's take a look at that for a minute too, because I think, for people listening, we have a lot of listeners that have Parkinson's and we have care partners. But the takeaway from this conversation thus far is that because he is so positive and he is assured that it's going to be okay even though he has Parkinson's he's not letting it sort of define him at this moment. It's making it easier for you all to have a great relationship with him.
Speaker 1:Yes, yeah, he's very open about his diagnosis and what he's feeling or when he has his good days or his harder days or whatever it is. He's very communicative about it and you know, I think his the best part about him is his sense of humor, so he can really kind of make light of all the situations and you know we all can laugh and you know it's it makes it makes a really big difference, I think, for all of us to be able to kind of have that rapport around it and, you know all of us to really try to stay positive.
Speaker 3:I think that's wonderful, that's really good.
Speaker 2:Yes, because, given the choice of laughing about it or crying about it, I prefer the former.
Speaker 1:Absolutely Both happen, that's for sure. There's laughs and there's tears, but the laughs Sometimes it's a mix of both.
Speaker 3:Exactly, yeah, exactly, that's totally true. It's a laugh for the tears, right, and you feel okay with that. It sounds like your, the way your family is handling it. You've um, you've really accepted this and you do it as a family. You're together with your, the way you're approaching it, that no one feels really your, your grandpa, doesn't feel isolated. I'm assuming your grandmother doesn't feel isolated and that you don't feel isolated. I'm assuming your grandmother doesn't feel isolated and that you don't feel isolated with it. If you had fears, it sounds like you might be comfortable expressing them to the family or even to him directly, which I think is amazing. Travis and I have this conversation all the time with people about, you know, giving a little more credit to the person with Parkinson's to know what's going on with the care partners, rather than trying to hide your emotions, which I think sometimes is difficult to do.
Speaker 1:Yeah, I mean my mom, you know doesn't have to do too much yet but um, you know she's, I can see for her and you know always just kind of keeping all of us in the loop of things. You know that are going on and um, and you know for him too, but Right, which is really important.
Speaker 3:I can tell you that there's a lot of people that are have a tendency to not discuss it with their children, their adult children or their grandchildren and they want to keep without. They think it's going to be more of a burden. So I think it's really good to hear the fact that your family is keeping it very open and how that that's been really very therapeutic for all of you.
Speaker 1:Yeah, yeah, we definitely talk. I think sometimes my parents will maybe be a little nervous to share things with me because, as I said, I am a catastrophizer. So I think sometimes they wait until you know not so much with you know, my any, any, not maybe so much with my dad's stuff, because now we know what it is, but with other things, I think sometimes they're like we're gonna wait until we get this checked out before we share with her. Right, I will naturally just spin and you know, good old doctor, google tells me yes, stay off of google. No, google no, which I'm like oh yeah, yep, that symptom, that symptom, that symptom, that symptom, yep, which makes it that yeah, yeah, exactly.
Speaker 3:So from my standpoint, as I'm listening to you, I'm curious. When you went into this Evie, you decided bat mitzvah is such a big step and you study for a year or more for this important time. How did you see yourself, or how did you see this project manifest? What did you want to get from it for yourself and what did you want others to see with it?
Speaker 4:I wanted others to almost see that Parkinson's is a disease, but it also shouldn't define somebody. I think there's so much more than that, and also that for me. I wanted to show that like I can help the community.
Speaker 3:By sort of sharing your story and maybe help other teens, which I think is so important, because I think a lot of families, I think, don't let their children know what's going on. The grandchildren, they're always trying to shield them from the information. And you're clearly smart enough to see that something is going on, no question about it.
Speaker 1:I think we overshare in this family.
Speaker 3:I have one of those families too, we were oversharers. I understand it, but I do also appreciate the fact that there are other families that have a very difficult time sharing that kind of information. Yeah, and medical information for many of us can be very frightening. So you know it's a scary thought first, and then finding the right time. So did he tell you sort of as soon as he got the diagnosis, or did they wait a little bit?
Speaker 1:No, they told us right away.
Speaker 3:Right away.
Speaker 1:Yeah, he had had a tremor for probably like six or eight months and he'd gone just to his regular doctor and at first they said maybe you need magnesium or like all these. They were suggesting he takes supplements. But you need magnesium or like all these, you know, they were suggesting he takes supplements. And then it obviously kept going. And when he went to the neurologist, I mean she looked at him and immediately it was like you have Parkinson's.
Speaker 4:Right.
Speaker 1:So it was a very quick diagnosis and he you know, he, I think called me the second they got in the car right so.
Speaker 3:I think that's great that you were able to be able to that. He was able to express himself so clearly at the beginning and be so forthright with it yeah not everyone feels that way.
Speaker 1:Right, right.
Speaker 3:Yeah, another one. No, I was going to say we've talked to a lot of people that have really had a lot of fear and anxiety over talking to their friends. Evie, do you ever talk to your friends about it? Like, have you ever told your friends about your grandpa's Parkinson's, or is that something that you kind of keep to yourself? I'm curious.
Speaker 4:I don't just like bring it up and I'm just, I'm not like, oh, my grandpa has Parkinson's, if it's something that relates to it somehow. Or if somebody's like oh, what are you doing for your Metro project, I'll explain. Or like as some, or like that's all come up like I don't usually I don't go think around going like, oh, my grandpa's parking right right, it's not something you brag about yeah I just got a horse you know, oh, we do know a lot of people who have parents similarly aged to mine that one of their parents has Parkinson's.
Speaker 1:We do and I don't know. I think it's interesting to see how other families deal with it. In fact, one of my very, very good friends from high school, who lived not far from my parents, his father had Parkinson's and he unfortunately passed away and he was only. He'd only been diagnosed maybe five or six years prior to passing away but his was like uh, well, no, it was more like mental and psychological stuff and um, the physical aspects of it, I think, um, you know, it was a very, it was just a very different um outcome and experience the entire time. But it was nice having him to talk to about it.
Speaker 1:His dad had been diagnosed prior to my dad, not by a lot, but they reconnected in their boxing class, their Rock City boxing class, and so I think that my friend Tyler's mom had said to Tyler mom, you know, had said to Tyler, I think I saw, you know, leslie's dad and and your dad's Parkinson's boxing class, and then he reached out and said you know, it's been a while, but my mom said that she thinks she saw your dad and the boxing class, and you know, I hope that it wasn't him, but if it is, you know I would love to connect, and so we really were able to connect over that, which was it's.
Speaker 1:I think it's nice for like for you and you know, as, as a care what's the term you use Care partner, care partner to have people that you can, you know, talk to, um, that are going through similar, similar situation, um, that you guys can share. It's like raising kids. It's like when you're experiencing these things and your kids are having a sleep regression or they're teething or all of these things. It's nice to have someone who can relate to that, that you can talk to and they say, well, this is what happened to me, or just to listen, and that they can understand.
Speaker 3:Right, I think that's so true. I mean, this is why we're big proponents of support groups, because it can really give you an opportunity to be able to speak with other people that are going through similar not necessarily the same thing, because, as we know, everybody's Parkinson's is very different, it manifests differently and it will behave quite differently from person to person. So you know, that's the one thing we know for sure. No two are alike, there's always. But it is great to have that common experience and I think, being a child, an adult child of someone with Parkinson's, there's a lot of value in talking to a friend or feeling some camaraderie with it. You know, I can see that.
Speaker 3:Yeah, I can see that that that would really make it Support groups, support groups. Have you, evie? I'm curious. You know we've talked a long time in PCLA about we'd love to do a support group for teens. Is that something? I'm just curious? Is that something that would ever interest you, like if you heard that there was going to be a support group for teens about Parkinson's. Whether it's a grandparent or a parent, would you want to do something like that? I'm just kind of throwing that out to you. It's an interesting thought to me to see You're pretty evolved.
Speaker 4:Yeah, I'd be down Like I'd be like either. It was just like like I would, 100% yeah.
Speaker 3:You would. You would feel confident doing that. Okay, that's good to know. I'm making a little mental note here. I always like to to ask a few things like that. Okay, that's good to know, I'm making a little mental note here.
Speaker 1:I always like to to ask a few things. It'd be good too because she's, you know, only 12 that then, like parents, would also have to be there. So it could be a good opportunity for my generation to be able to connect as well with you know people who like, maybe like can relate to.
Speaker 3:If you were to meet someone you know let's say you met perfectly. You met another family, some family that you did not know, but they had a young person in their family that's somewhere between the ages of 12 and, let's say, 60, what would be something you would say to them about your experience, or would you have advice for them or any tips, anything like that?
Speaker 4:I would just tell them no matter, even in the hard times, everything's going to end up being okay. And you just have to know that not everything's full of joy and like, you just have to like know that like not everything's full of joy. And also, I feel like I kind of thought about this like a little bit ago, but I kind of feel like diseases are sometimes like roller coasters. You sometimes will go up and be happy, but you don't know when it can go down. You don't know when the roller coaster will go back down. Like that's kind of how I think of it.
Speaker 3:I think that's a very, very good point and very astute of you to see that at age 12, you know that's pretty amazing that you recognize that not too many people do, and I think that's really great. So yeah, in the overall scheme, now we're doing the podcast. This goes out to a lot of people in a lot of different countries, as well as the US. What do you want them to know about Parkinson's, or Parkinson's awareness? What do you think would help people to understand Parkinson's a little bit?
Speaker 4:I feel like it'd be helpful if I don't know, it's okay, like, maybe, like, if I were like to describe, like a short summary of what it is, I guess like did you look on Google after you found out about the diagnosis?
Speaker 3:Do you do stuff like that, or did you just let your parents tell you?
Speaker 4:Well, I was little, so like I didn't really know how to you didn't know at that point, you wouldn't have been able to do it right.
Speaker 1:Yeah, I think the thing that I've found to be like the most interesting, as it's happened, is it feels like it's actually really common that you know you can be almost anywhere and there's someone else there who has a parent or a grandparent or somebody who has, you know, that has had Parkinson's in their family, and I think that is what's it's. It's crazy how I think that is what's it's crazy how you know, I don't want to say it's common, but it is pretty common. It is common, it's very common. Now it's kind of shocking how many people have it and are diagnosed with it.
Speaker 1:Um, and I think the really crazy part which I talk about you know with my family but how they've really made very little progress in finding any sort of cure and there's not been any new. I know that there's things like outside of the U? S? Um, but typically they're not until you know, I mean and you guys might know more than me, I'm sure that you do, but that you know until you're much further along in the progression of the disease, um, which it would seem to me like it would be good to have something that you know slows the progression from the get-go, instead of being at that point where you're desperate trying to figure out, kind of like grasping at straws.
Speaker 3:Yeah Right, I mean, the truth of the matter is when my husband Sandy was diagnosed in the early 2000s, they said oh, we're very close to a cure. Then it got to be 2010, 2012,. We're very close to a cure. But it got to be 2010, 2012, very close to a cure.
Speaker 3:But the truth of the matter is I think it's been explained numerous times by many internationally recognized movement disorder specialists that part of the challenge here with finding the cure is they don't know exactly what causes it and for different people, different things. It may be caused by different things. There can be environmental, it may start in the gut, it can start in the brain, it can start in the olfactory bulb. There's so many different ways it can manifest cognitively as an issue first. I mean, there's so many places and so many different ways.
Speaker 3:So I think for those of us living in the Parkinson's community and in this Parkinson's space of wanting the cure in the meantime, we have to look at what are the things we can do to help ourselves right now, and I think what your dad is doing is fantastic Exercise, exercise, exercise, socialization, exercise, socialization, understanding, going to support groups, understanding what you have available to you, and I'm sure that many of our listeners have tried some clinical trials as well and that that's always an opportunity for people to do things. So I think that whatever we can do to let people be more aware of what Parkinson's is and certainly Travis has opened his life through this podcast to so many people- I have a request, evie, had you ever heard of Parkinson's disease before your grandpa was was diagnosed?
Speaker 4:I don't think so.
Speaker 2:Leslie, had you heard of Parkinson's? Yes?
Speaker 3:Yes, okay, what did you think it was, or what was your image of what Parkinson's disease was?
Speaker 1:Michael J Fox was my image. I, you know, grew up watching Family Ties and you know those things. So that was. You know what I had. You can just leave it. That's what I had sort of envisioned. Obviously, I've known, you know, he's had it for so many years. So, and the documentary that he did came out after my dad had been diagnosed, when I so, but no, I mean, I had known of it and I knew, you know what it was, but I didn't have anyone that I was close to that had been diagnosed before my dad.
Speaker 3:All right. Well, as we're starting to wrap this up, evie, is there anything that you would like to say to people that you want to talk about, and do you have a goal for your project? Or is it just your goal, awareness? Let's look at what you really are thinking about with this.
Speaker 4:Yeah, I think just people should be aware that Parkinson's is a disease that, like I guess, can not hurt. I don't know what the right word would be. That it can affect.
Speaker 1:Yeah, it can affect not just the person but like anybody else around them or anybody else who has a connection to them and that, like parkinson's like, is something that yeah, I think the other thing we would want to that we're going to try to do is um to help raise money for pcla and um have the opportunity to try to help you in your organization because it's so important to what you're doing and um. You know I, like I said, I think the thing that's helped my dad so much too, is the community that he has in Seattle and um. You know the organization that's based there that has really helped him and introduced him to um. You know other Parkinson's patients and um. I think for him that's also been really helpful. And since we're based here in LA, um, and we're just we're excited to know you and get to know you even more and continue to try to help and support what you're doing because it's really so important.
Speaker 3:Thank you so much, and we're just happy to do this. This has been really great for us. Travis, do you have any closing thoughts, anything you want to share?
Speaker 2:No, but I will keep tabs on you, Amy. I want to know what you decide to grow up to be.
Speaker 3:Absolutely.
Speaker 2:Any thoughts right now.
Speaker 4:On what I want to be when I grow up. Yeah, an interior designer. I've been wanting to do it since I was in like kindergarten Wow, I love it.
Speaker 1:Yeah, my family. I grew up in the furniture business, so it's in our blood.
Speaker 3:It's in the blood. Genetically, you're just predisposed.
Speaker 1:Exactly, exactly, so we'll keep it going in some way. That's great yeah.
Speaker 3:Exactly so. We'll keep it going in some way. That's great. It's a wonderful way to do it, very creative.
Speaker 4:Yeah, it was your dad's company, it was.
Speaker 1:My great-grandfather actually started. Oh, that's fantastic. Yeah, so my other daughter is also. She is in that realm of interior design or architecture.
Speaker 3:They're both creative, so we'll channel that, channel that, and I think that you would both. You and your husband are also creative. So, that's great.
Speaker 1:Yeah, that wasn't so far from the tree.
Speaker 3:No, not too far.
Speaker 1:Yeah.
Speaker 3:Well, thank you so much for giving us the time and spreading the word and thank you for the opportunity to help PCLA. We really appreciate it and, coming on the Indie Podcast, it means a lot to Travis and myself.
Speaker 2:And that's a wrap, bing.
