Parkinson’s Path: Enough Hope, with Lianna Marie

*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 everyone back to Answers for Elders Radio and I am here again with our wonderful Lianna Marie, who is our resident expert on Parkinson’s disease and we’re so excited to have you here in Lianna. Thank you, thank you for being here. Thanks is great to be here. You know, you have written two amazing books and have such an incredible community and I think one of the reasons why you have built such a community as because this whole thing concept about hope is so big with you and I’m so glad that we’re going to expound on that because, you know, I think we all think we might have hope or we might not have or we might feel depressed or you know, you and I have just had a discussion earlier about, you know, how can you live your life without purpose, you know, and having that that hope filled centeredness within yourself? So tell us a little bit about how that drives your work and what you do. Yeah, for sure. Well, hope is a key part of pretty much the beginning of everything in terms of fighting any kind of major illness or a difficulties, major difficulties might be having in life. So we want it. We say start with hope. So the challenge that we give to everyone is saying, okay, let’s see where you’re at today. Is that something? Some people look at the life, you know, the cup is have full versus half empty. which kind of person are you to start off with? Right? Right, so before you’ve been diagnosed with Parkinson’s, what kind of person were you to begin with? Right, because some might some people are just naturally able to have more hope than others. So what we have done is we just in the book, we’ve just talked about, hey, let’s start with hope and see where we’re at on a kind of a scale of hope. So we’ve just yeah, so can I tell you about that little okay. So we’ve developed what sort of a hope test, and it’s not like a pass or fail, to just sort of decide where we are at on the scale. Okay, and we created an acronym, the the four letters of hope. So chope. And so to start we’re just saying okay, in in life in general, do you hold on? Like, do you hold on even when you know that, knowing that pain is temporary? So that’s H so do you hold on just knowing that, you know what, pain is going to go away, this is just temporary. I know that eventually this is going to pass. This to show pass. So that’s so. In other words, it’s holding on, not is not holding on to the pain. Correct dragging yourself down, but holding on is about having face that correct going to work. It’s going to work. You do you have can you see the end, the light at the end of the time right that? Yes, I’m going through this and I know that pains temporary. Yeah, so, in general, you a kind of person that does that more, are you more like, oh my gosh, life is over. You know that? That extreme exactly. Hopefully you’re not like that. So and Oh, so we got H O as. Are you an optimistic person? Do you generally look at again? So, are you know, when the future seems a little bit bleak, to go? You know what, I don’t care what that doctor has said. I’m I’m feeling optimistic. I’m thinking, you know what I’m going to I’m going to fight that. I’m going to fight this and yeah, I’m a believer and like again, that cup is half full, not half empty. and P practicing acceptance. We talked about this a little bit before, and that is again, do you you know? It’s not about resigning yourself to something, but just accepting that. Okay, I understand what you’ve told me. I accept that, and here’s what I’m going to do about it. You know, I’m not going to just put my head in the sand and say no, no, or cover my ears over, Oh, I’m not, I don’t want to hear you. I can hear you, you know. So that’s acceptance, practicing acceptance is p and the last one is e. enlist the help of others, and this is really important, good one, you know, because everyone knows that you need a team in life to survive, to survive anything. So we talked about it. Are you more likely to be reclose and try to hide from people, afraid to ask for help, or are you someone who’s always like, oh, yeah, I got no problem, I’m going to go. I get tons of friends and I have no problem when I’ve had when I’ve had troubles in life, going to talk to them or or whether it be a counselor or do you have you ever? Have you ever been likely to do something like that? So these are the things we want you to look at for now just to see where you’re at. And, Lianna, I can see where this would happen. You could use that hope test, not only if you were you yourself were diagnosed with Parkinson’s, but also if you’re caregiver of someone who, it has parkinsons for sure and you’re dealing or family member, because the family is well, probably has the similar kind of feelings, like what are things going to happen, I would think, for sure. Yeah, so, like, was I optimistic when my mom was diagnosed? You know, I generally am a more optimistic person, and so I you know whether I was because I was naive and didn’t know what the future at hold for sure, or I was just you know what? You know what I know? I think we’re going to this is going to be fine. I mean fine in quotations, but you know what I mean. Like it. We’re going to do it. So again, it’s just really important to know where you’re at and there’s no past or fail. We’re just trying to say, I think in life in general, we always want to know where we’re at so we can look at things that we can improve roof. I know a lot of people have told me, you know, when they first got diagnosed, that they’re afraid to tell anybody, and they can. If that lasts for a really long time, you can feel pretty pretty alone in your and that can be detrimental to your health. So we really are focusing, I mean, all those four things being very important, but enlisting the help of others, we’ll talk about later too, is because that’s so important in terms of how you’re going to make it through your journey with Parkinson’s. So so we are talking again to Lianna Marie, and Lianna, you are the founder of all about Parkinson’s. Tell us a little bit about your site, what you did. Yeah, so all about Parkinson’s is somewhere we can go, everyone can go, to learn more, to share your experiences with other people who have had Parkinson’s. We try to give our information and easy to understand format and let people know this isn’t a scary disease. We try to impart hope on with with our message. And Yeah, so that’s our key thing that we’ve been working on lately is our key message has been right, having hope for your future with Parkinson’s, you know, and that is so vital because when you talk about hope, you know, I think one of the things that we talked about, because you have this wonderful little acronym. What can you hope for? Right? That, I think, is a huge, exactly question that I really want to explore. Yeah, and that’s a great question, because you let’s say you just got out of the doctor’s office. He just told you you’ve got Parkinson’s. I mean, it could be anything, but we’re we’re talking about Parkinson’s today. And you know, for my mom, it wasn’t necessarily that instantly she goes awesome, here’s I’m going to start thinking about all the things I’m going to be hopeful for my future. Right. It was a gradual process of coming up with here the things that naturally came to her, and she did hope for and achieve, I would say, for the most part, all these things. And one of the first things that came up was that she was afraid of was I really want to be able to continue to do the things I love. I think that’s a no brainer, right. So she was very hopeful for that. So, you know, she had hobbies that that required fine motor skills. She loved to knit, she was she played piano, she like photography, she was big on taking she dug in her garden, she had a rock garden and like to go for walks, all these things. Also huge dancers. She loved to dance. So these are things that she said. Gosh Darnett, I’m never going to let somebody take that away. I’m not letting parkinsons take that away from me. Right and for the most part, for her whole journey, she was able to continue the majority of those things. I know. Another thing she really hoped for was she would often use the word productive. I want to have a productive life. Of course. So. And initially, yeah, so initially she was like, well for her, you know, I want to continue my job, and we talked about this before. She had a desk job. So she was able to continue for well, ten, fifteen years. And no person that has a, you know, terminal illness of any sort wants to be a burden on their family. I know, I know, and so I can see that that’s a huge can be a huge issue. It is needs to hope for. For sure, and so her relationship with her husband, my Stepdad. That was really important to her that she would be able to continue to not let Parkinson’s disons define her or them, and that will. That’s a separate topic, but for sure that was in terms of having a happy and productive life. That was something that she really hoped for and and for the most part, was able to achieve. And finally, she really hoped to live pain free. And I think this is something that comes up a lot and in the question mark in the back of people’s minds is what is this good? Is this disease going to look like like? If I see people, a room full, we talked about this once before, our room full of people in wheelchairs, and that’s the first thing you see when you’re diagnosed. That’s not a positive image to look at and go, okay, that’s something I you know. So it’s something you dread for sure. Is that going to happen to me? Exactly part of it. So mom, you know, she really hoped to live. There was, you know, we went through stages, but in terms of pain free, there would be things that we mean, nobody tells you everything about what you might get right. So some different skin conditions or oversweating and various things. I mean she we joked about it, but at the cottage where she ended up living for many years, she walk around in her bathing suit, her two piece bathing suit, because she had to. She sweat so much. And this is a it wasn’t painful, but it was just a side effect from that, from the medication. So we, you know, she made it easy to just don’t go jump in the lake anytime she wanted. But so little, little things like that. But more harder things were she would get from twisting her leg. Would did a lot of again, this was part of an involuntary movements that you can get from Parkinson’s. And a couple years she get really, really bad and we put her she had a leg brace. These are, you know, again, not everybody gets this, but there’s little things that came up. Another skin condition that she got that was really itchy and her skin get really read and again, different stages of the way, we would go, okay, so what are we going to about that? So we go to the doctor, get medication. You know, we go okay, we go to the physio or we do this each thing along the way, and then it we addressed and then you move on and then something else would show up and then we attack that right. And so for her, I would think that the biggest pain in terms of living pain free, it ended up being a lot of the emotional pain that that she experienced that we had to work through as a family, as with her and accounselor with her and her doctor, various medications. And again, it wasn’t we weren’t going to give up. So it there’s no option there to give up. So we she really really hoped to live pain free and throughout her journey, I would say more often she wasn’t in pain. But I’m not going to and hurt shut coopers example to you as a family, I’m sure inspired you, you know, well, fired you. Well, yeah, I mean that’s why we’ve got this mission of hope, because of my mom, right, so, right, reason why we’re here. Absolutely. So that’s amazing. So, Lianna, tell us how you reach you? Well, yeah, you can go to all about Parkinson’Scom and read a little bit if you want to know more about it. My story and for sure we’re working on a couple things there. You’ll see there’s a Parkinson’s Wall of Honor which we’ve just launched in that if you’ve lost someone with Parkinson’s, you are welcome to submit your loved ones details and we will honor them by putting them on our virtual Wall of Honor. Well, I think that’s so cool that you have this wonderful resource for those families that are dealing with this disease and I’m just so glad you’re in the show today. Some thanks very so much, Lianna, and you’re welcome. Thank you. 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.