Lianna Marie describes her personal experiences with Parkinson’s, her mother having lived with the disease for 30 years.
View Episode Transcript
*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 leanna Marie with all about Parkinson’s and answers for elders radio. And Welcome back to answers for elders radio everyone. I am here with Liana Marie from all about Parkinson’scom. Yana, welcome to the show. Thanks, good to be here. I am really thrilled to have you here because you’ve written some amazing books about Parkinson’s disease based on your story, and I am really excited for our listeners today to just kind of get to know you and a little bit about what inspired you to create this amazing organization with two published books out there. Yeah, thanks for asking. I actually all about Parkinson’scom started back in two thousand and five and we launched it initially because we thought there was a great need for easy to understand information about Parkinson’s and having everything that you needed all in one place. Yeah, and so at that time, actually, my mom had already had Parkinson’s for about almost fifteen years. Actually, we were sitting around the Table One day and realizing how much stuff at that point she had had to learn on her own. Well, yeah, just like trial and Arrow things, and that that point there hadn’t been anything written that that had explained all these things that she was going to go through personally, you know, and backing up as her daughter, when she started having symptoms and things, what was that like for you guys as a family? Well, you know what actually, that goes back to. This was in the s when she when she first started noticing things and for her was just a tiny little tremor in her right and her left hand, and it wasn’t it wasn’t like this massive oh my gosh, we’re so scared because you didn’t know really what it was. When when the actual words Parkinson’s disease was an officially diagnosed, that’s when what was like, Oh what, what does that mean? And so it is again because of when it was. It was in the S, and not to say that, you know, we didn’t know anything about Parkinson’s these but today we know so much more because it’s been in the limelight with various celebrities like J Fox. So I guess we were just concerned for my mom and I was in my teens actually at the time and I’m not really knowing what that was going to be. And so through when you know initially. Again, I could say there wasn’t a lot to that you could notice when terms of her symptoms. But her whole life of Parkinson’s was a very long and gradual one. It wasn’t less like some people get a disease that starts and it’s over in a couple of years. Well, on a on a happy your note, if you want to call it that. MOM had a lesser severe type initially, and so it was a long journey for her. Almost thirty years actually she had. Yeah, wow, yeah, and so you know, I was inspired by her to write books about Parkinson’s, predominantly again, like I said, because she had to learn everything on her own. For example, one day, I mean this is ten years into her disease, we go mom, you know, there’s some beat music on and it was and some music she loved and she had been frozen still and all of a sudden she just jumped up and started walking and we’re like wait, what does happen there? And so then that was again. Now today a lot of people in the Parkinson’s world know that music is so essential to helping people were frozen. Yeah, but we’d only learned it like ten years into. Explain to me use the word frozen for a later tell me about what that means. Yes, so it’s not letting vacuum in something, because obviously you know a lot and I want to make sure that we’re on the same page. What does that mean? Yet? So a lot of people who are who have experienced a disease, evocs, have seen this phenomenon, if you want to call it, where someone with Parkinson’s can just all of a sudden stop in their tracks. So they’d be walking and all of a sudden they stopped. Now, doctors aren’t researchers on a thousand percent sure exactly what’s going on there. However, and I’m I am not a medical doctors, not going to explain this in easy to understand turnch is good all of us, essentially, though, the the reality is you aren’t able to move, and so for her so that you don’t so that we could get her going again. What, most of the time, so says? We’re out shopping, for example, and then obviously we can tell that her medications are wearing off or something’s happening and she’s slowing down. All of a sudden she’s stuck, and so we’re like okay, we’ll sit down. We would have a little MP three player back then. Nowadays people use our phones or whatever and whatever. We had an MP three player, a tiny little thing we hang around her neck and then she plugger the ear phones in and we get that one piece of music that just would rock her world and we put it on and it would. We’re worry it went nine out of ten times it would work and she could get going again. So that was something we learned by just fluke actually that that was something that would work for her. And another thing that we learned. There’s so many of these things that we learned on our own. Trial and error is walking through doorways, and that’s another phenomenon that will hard to explain but why it happens, but someone with Parkinson’s will have challenges through narrow spaces and, for example, walking through a doorway. So one day we’re just walking I go, you know what, I don’t even know what made us think of it, but so let’s try to go through sideways. And it was so easy for my mom, not looking directly at where she was going, we went sideways through the door like it was so easy. So again, trial and error things that we learned and all this we wanted to present to other people who were starting off their journey so they wouldn’t have to go through ten years to figure out all these little trend am I going to do? Yeah, little trends, and the thing is to learn from your experience. It’s like I’m lucky every day that I can share my caregiving experience with my mom and you know, like we’ve talked before, it’s like to have families not go through what I went through, and the same thing now you’ve gone through with your mom. There’s so many families out there that have senior loved ones. LEANNA and I, you know what you’ve been able to accomplish. So for our listeners were listening here here today, we’re talking to Leanna Marie, and she is the author of two books, everything you need to know about Parkinson’s and everything you need to know about caregiving for partner Parkinson’s. And you have a new book coming up. Is that right? Yes, I do. I’m actually working on a third and it’s called the Parkinson’s path, and this one is the subtitle is how to find hope, happiness and meaning on your journey with partners kind. I love that and since. Yeah, it’s a lot because what we’ve discovered over the years of having the website, readers writing in and talking about there’s a big there’s an area that hasn’t been touched upon much in other publications, and that is the area of the emotional side of Parkinson’s. And we all doctors, are always an often addressing the mobility, of course, because that’s a major pair of Parkinson’s, right, and that’s what they’re trained to it, of course, and they are now, of course, but they are acknowledging, all acknowledging the emotional side. Depression is so prevalent and that’s for two reasons. One, because the DOPEA mean that’s lost in your brain does cause depression, but also just the mere fact of losing your mobility can be a reason why you’re depressed. Right. So we wanted to talk about that and how people, again, we can talk about this later, but how you can have hope when you’re dealing with a chronic illness. And what is it all mean like if I’m if I’m going to be living for then for the next fifteen years with a chronic illness, what, what am I going to do with my life? How is it looking to look differently? What are some good things that I can make from this new life? And you know, you had that foundation with working with your mom in the beginning, right, right, exactly. So she was very much a part of the you know, you have such a unique perspective than anybody out there because not only were you her caregiver and her daughter, but you had the actual hurt, real life experience, right, and she had a lot input in that first edition when we wrote it back in two thousand and five, and we had a lot of fun in terms of her saying calling me up and say, Oh, I got another tip for you. I got to write it in. I got to write it in because I just learned something today that I didn’t know before, something to make getting in and out of the car easier or whatever it was, and that’s amazing. So yeah, it was. I really you know, my mom is my number one inspiration and I know might some little hokey. A lot of people say, Oh, I got the greatest mom in the whole world. Well, I had the greatest mom in the whole world and I she was my greatest cheerleader and for her legacy I want to I want to be her greatest cheerleader and say, you know what, this is what we’ve left behind, what she’s left behind in terms of things that she learned and how she was able to conquer, if you will, twenty nine years, almost thirty years, of Parkinson’s and how someone else may be able to make through their challenges with the disease and not to give up. That’s for sure. Those are some of the things that she left behind and I want to make sure that others can can have that kind of hope. Absolutely and and really to have that kind of input with your mom and tapped her the ability it. I’m sure it gave her huge amount of purpose. It did, and I like again I say I don’t know that initially, when she was first diagnosed, if she was over the top of the moon going well, who, I can’t wait to find a new purpose in my life. However, you know, I think through the years she you know, her life did change. For sure, it all changed, all our lives, but it was how we figured out to create a new life and one that has had meaning and that one that was still and again, I think, very inspiration to other people who were early on, who may look at let’s say, for example, people who are early on in their journeys looking at my mom twenty, twenty years in and going wow, I can’t believe you’re still doing this, that and the other thing. Right. So that was and I don’t want to say, you know, some of that is because she got a better hand out to her and other reasons are because she did. She was very, what’s the word? I’m just determined, resilient. Those kind of things that come to mind when I think about my mom. And just you know what, I’m not going to get a lot of people say this, parkinsons is not going to define me. No, you know. So that’s that’s something that she really held on to. Well, and I think too, when when we have the challenges, the insurmountable challenge, and when you talk about the depression piece, you know there’s there’s an element of that keeps you saying and above that water if you have a newfound purpose to do that. So what I’m saying is, is it. I’m sure in many ways that helped your mom and many ways of absolutely involved. So that was good. So you have this amazing web form for families that are, you know, connecting, that have loved ones or if you’ve been diagnosed yourself with Parkinson’s. Tell us a little bit about we your website. Yeah, so on the website we of course, if you can find out more about our books, but we also have a forum which we created because when we first put out the books, we realize so many people are emailing me saying I feel so isolated and alone and I’m living in Australia or I’m living in England, and we wanted something to help people connect with one another. So that’s why we created a forum and that’s gone really well. And finally, the last thing we piece that we’ve added is we’re creep starting to build a Parkinson’s wall of honor, and that’s for people love that. Yeah, well, that’s for those who’ve lost someone with Parkinson’s and we want them to be remembered forever and this is something we’re going to do. And so again, that’s all part of the things that we’re working on for the updates to the website. Yeah, well, I’m so excited and, Leanna, I’m so glad to have you as a regular contributor here to our wonderful online portal and to kind of be our resident expert on Parkinson’s. Were so honored to have you and for those listeners that are here on the radio today, you can go to all about Parkinson’Scom and get LEANNA’s book. I trust that each and every one of you will be really thrilled by purchasing it. So thank you so much for being on the show today, Minna. Thanks. The preceding Parkinson’s path podcast is provided by leanna Marie with all about Parkinson’s and answers for elders radio. To learn more about Leanna, story, her books, the Parkinson’s wall of honor and more, go do all about Parkinson’scom
No post found!
Originally published April 06, 2019