Parkinson’s Path: Finding Meaning with Lianna Marie
Lianna Marie talks about finding meaning when you’ve been diagnosed with an illness like Parkinson’s.
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*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.
The following Parkinson’s Path podcast is provided by Lianna Marie with All About Parkinson’s and Answers for Elders Radio. And welcome to everyone to Answers for Elders Radio. And we are here back with Lianna Marie from AllAboutParkinsons.com and Lianna, this is a very important topic that we’re about to talk about, and that is finding meaning when you’ve been diagnosed with an illness like Parkinson’s. What does that mean to you? Yeah, well, thanks for having me. I just actually been doing a lot of research on this recently because it’s becoming more and more a question that people ask when they’re diagnosed. And again, it’s going to be different for everyone, but especially since different people can be different timing of their diagnosis. So say you’re in your s versus in your s or s there life is, you’re a different life stage. It could be based on, like what symptoms you have. Some people experience very minor symptoms at the beginning and for many years those don’t change. So they may not be looking at Oh my gosh, they may not be that scared or nervous about their diagnosis. But others who have more significant symptoms or and again they may have been years just being diagnosed, because sometimes people are misdiagnosed and they take several years, in my mom’s case, three to five years, just to get diagnosed, and so by the time they are diagnosed, they go oh my gosh, and the doctor says, by the way, there’s no cure for this disease and it’s progressive, and so you’re kind of thinking, well, what does that mean, you know, and so your left kind of like, well, does my life going to change? And how’s I going to change? And whole bunch of questions come up into it, right, and I think the other thing is is there’s that question of why did this happen to me? Yeah, and and and it that will be normal. Yeah, it’s very normal. Yeah, and but I can only understand, I mean a suspect anyway, that, as somebody is is diagnosed with some kind of prognosis like that, it’s like it’s the why me questions, you know, and and really being able to turn that into this is why, right, and it said what is happening with my life to me is really a positive way to put us, and especially if you’re early on set, like more and more we’re hearing more and more people talking about early on set Parkinson’s and that being before your Morny. So there are a lot of people, for example, who, let’s say you have to, you know, two young children at home and you’ve just been diagnosed with Parkinson’s. You’re a woman and you’re just like, oh my gosh, what is this? How can I, how could I keep living mind life normally as a mom, as a caregiver for my children ABS and so a lot of this thing is the idea that, you know, depending on again, it’s going to be different for everyone, but you may have to reinvent yourself. For example, some people, and I’m we were talking in previous podcast about you know, some people just say that it’s being diagnosed with Parkinson’s was a wakeup call and so they then learned more about themselves and saying and more definitively decided what they’re going to do with the rest of their life. And so this can be a positive thing, and so finding meaning. We’re talking about, you know, looking outside yourself, for example. You know, I was recently reading about this woman who’s in her 80s and she is diagnosed with Parkinson’s a couple years ago and she said, you know what, I can’t do a lot with my body anymore. She had pretty severe mobility issues. But she says, I my goal in life for the however many years I’m left on this planet is to be a blessing to others. And and so we don’t even think about that. Is like, well, that’s not what’s to do. Right, most people think I want to find meaning in my job. I want to find meaning with my family, and in her case she was just like, I want to spend time with my loved ones and be an inspiration to them if possible. Well, and I think that the thing is is to come to grasp with what you can do and what you can’t write, as I think a lot of times we are afraid to admit what we can’t do. Yep, to people, or we need, you know, we need help in that area. And so to find that way of, you know, realizing that, yes, finding new meanings is like they say that, you know, when a door closes, a new window opens. Right, it’s that feeling of you know, this is how it used to be and this is how it is now. Yeah, and there’s what I can do now. Right, it’s not. Life is over. Life. Life is changed and it can be a new beginning. And again, like I was saying about earlier, is this idea that you know, you’ve been woken up now, so and in some way, and so now you have a choice? Sure. So, a lot of it is deciding that you do want to find a new meaning in your life and that finding your why, which is what we’re going to talk about next, is like your purpose. And what is that now? Is it change? Is it the same? You know, for some people like it. You know, as I said earlier, if you have minimal, minimal symptoms, you may just like, you know what, I’m going to just act as if nothing has changed. And so I’m assuming that there’s some real key questions that someone could ask themselves. Yeah, for sure, like what one of the things that we talked about is in our Parkinson’s path book is just asking inward questions about who am I, what have been and what’s really resonates with me? What are the things that have been consistent in my whole life? and to find, you know, to discover again. This could be a new purpose in your life or could be the same, depending on again, your age, your stage in life. And one of the biggest reasons we talked about why it’s important to find that is because, over and over and over again we talked, researchers, scientists know that discovering your purpose in life does make you live longer. I mean you don’t I mean it sounds obvious because it’s like, well, if I don’t have a reason to live, chances are I’m not going to carry on very much longer. So we’re trying to get people to be inspired, to reinspire themselves find things that they want to do in life while they have Parkinson’s, so that they want to continue. And many people can live twenty again, twenty to thirty years with this disease. So that’s really interesting. So we are talking again to Lianna from all about Parkinsons.com and we’re talking about finding meaning with a with the diagnosis of Parkinson so, Lianna, let’s talk about now why this is important. Yeah, so again we’re saying that finding meaning, first of all, is possible in your new life. We don’t want to let Parkinson’s define us, but at the same time we have to acknowledge that it’s going to make some changes. Things are going to change in our life. So we’re not into Nile, but we’re saying, okay, so I’m going to take this and we’re going to turn it as much as we can into a positive and so finding a purpose, so that we’re not wandering aimlessly in life going, okay, I’m just focusing on my medications, that’s all my life is now. We don’t want our meaning to be that. It’s because, again, like we don’t want parkinsons to define us. So, you know, coming from a minimal amount of purpose, just from a daily point of view, to a larger scale, you know, five years, ten years, what are my you know, my in my mom’s case, she lived for her for her kids and her grandkids. That was a big enough reason for her to want to keep getting up every day. And that’s on a larger scale. On a smaller scale, she said it was so important for her to have a purpose because many times her body was not excited to get up in the morning. Many people with Parkinsons have difficulties moving. And she said, you know, just giving her a task that she had to do that day. She was like she referenced she was part of a small group, Church group that would meet at her house and they would they would do a sing along singing songs, and so her job that the group gave her was to pick out songs and honestly, this was just a small thing to us, but to her it was something everything that she had to do. Yeah, she’s like, Oh, today I have to organize the songs, and I was actually fun for her and she was really musical, and so this was just a little mini purpose for the day, but it was something that meant a lot to her and I think that goes for all of us. But can imagine what life would be without purpose and I think being in that spiral, if you don’t have a you know, define a new meaning or new purpose. With living with Parkinson’s, I’m certainly sure that not having that can make your life so incredibly and right. And so there’s such there’s such a reason why to find those little, yeah, little milestones and even those, you know, I talked about people who don’t have Parkinson’s. This whole like you, of having purpose. You know, we look at the places in the world where they have the most since I’m sent centurions, people who have lived past a hundred. They are and predominantly well. There’s several areas in the world where we see this. But one place that fascinating me was Ikinawa Japan, Okinawa Japan, and they have hundreds and hundreds thousands of people living over over a hundred and what they found, the research has found, is one of the key points or reasons they believe that these people are living so long is they have this sense, and they use the word, this Japanese word called Iggy Guy, and it means to live, to have her that which makes your life worth living. And so they adopt this philosophy of that it’s so important that you identify that and that that was will make you live longer, be more resilient to illness and which, of course, is very important in Parkinson’s, that we can actually chemically change our body just by having a reason to live. And another favorite quote of mine is actually by a German philosophy you might know him, Frederick Nietzsche. Needs, he needs, I never know how to say this, any and his whole he who has a why to live, can bear almost anyhow. And the idea that Parkinson’s overtime may give you some challenges that might seem insurmountable mountains, that you think I can’t climb these mountains. And if you have that, why? But but for my children or my grandchildren or my purpose in life is to be an inspiration to others. I’m going to be this great, whatever example of someone who as overcome these challenges. If that can that can, oh, that purpose, that meaning, can that why in your life can then help you get past all those challenges that that Perkins is dealing giving you. So yeah, so that’s my my major focus in this one section of the book is getting people to refocus their lives, getting to if they have to, to reinvent themselves, to look outwardly to see what things that they may be able to offer in terms of even if it’s just as simple as hey, you know, I’ve ever thought of myself as it’s somebody who can inspire other people. Maybe I can’t write. Most people don’t think that way, but you don’t realize how many people you can affect just by fighting the good fight, fight fighting parkinsons or if cancer patient, or whoever you are. I think that that’s really important and that’s something that we’re trying to get. Again, this isn’t applicable just to people with parkinsons. Is anyone right who can, who can just start thinking of themselves as I could be a blessing to other people and and I’m hopeful that that the more people listen to this message, the more that they can realize that they can find meaning and purpose and live a great life with Parkinson’s. Wow, very, very powerful, powerful words. Thank you so much for all you’re sharing. And you know, living with meaning and understanding that everybody has a purpose, even if you’re afflictive with Parkinson’s I think is a very powerful statement. So thank you for sharing. You’re welcome. The preceding Parkinson’s Path podcast is provided by Lianna Marie with All About Parkinson’s and Answers for Elders Radio. To learn more about Lianna’s story, her books, the Parkinson’s Wall of Honor and more, go to www.allaboutparkinsons.com.
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Originally published July 30, 2019