Parkinson’s Path: Having 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 leanna Marie with all about Parkinson’s and answers for elders radio. Welcome every one to answers for elders radio and we are here with Leanna Marie, who is the founder and CEO of all about Parkinsonscom. Welcome to the show. ME. Yeah, thanks, Suzanne. I’m really glad you’re here because you have been an amazing resource for those families that are worldwide, I’m, struggling with a loved one or their own diagnosis with more with Parkinson’s. And you know, how are they? You know they’re navigating it through, and so you’ve probably seen families go through a lot of upheaval and a lot of depression. You know, you’ve talked about that in previous conversations. Just before we start talking about today’s topic, which is about having hope, which I love, let’s talk about a little bit about you know, obviously, why is hope so important? Right? I mean, okay, hope is such a big topic, and it is, but I love, of course, I love the term because it is it’s a small little word, but it means so much and that’s what’s still great about that word. But yeah, it is really crucial in anyone’s life and dealing with a disease or any major challenger facing and one of the things I’ve found in researching for my new book is, you know, one of the one of the great researchers. His name is Jerome Group men and he he researched hope and the value of hope. He was he’s a thirty year practicing oncologist cancer. Also, doctor Woll and, researched hope and said this was amazing. He said in all of his thirty years of practice, having hope was as crucial, in fact more so, than giving any medication or prescribe. I’m striving animication or procedure he ever did. He said that was paramount in all of his cases. So, and I believe that to be true. I’ve seen people who give up, and I’m not talking about necessarily just Parkinson’s, but in life we’ve seen people thought and others who said no and may have delayed their disease a little bit because of they said, you know what, I’m going to fight this or whatever. So for sure having hope makes a huge difference. Another you know, fascinating study I read about was just the idea that having hope, your brain releases endorphins by having this belief and expectation in something, so your brain releases these endorphins which then can fight pain. Well, we all know the world of Parkinson’s how much pain can be a problem indeed and dealing with just everyday living, because there’s pain associated with a lot of the symptoms, and so just imagine that just having hope, this belief and expectation, that that can then help your level of pain. So absolutely huge, huge in your daytoday living and want it. I’ve heard that it’s also helped with people with especially with neurological disorder like pot Parkinson’s or Alzheimer’s or dementia or anything like that. I know that. You know being active and being social and all the things that we talk about. This is really what you’re talking about as well. It brings in that something to look forward to, something to anticipate, something to believe in, right, and it’s that that’s important exactly, and it’s not just something that we just go oh, that sounds nice and everything, but there’s actual science to see that there are changes that are happening in your brain, chemical changes that are happening in your brain, and this is fascinating to me, that we can physically change by changing our mindset and not. That, to me, is something that we should all remember, that it’s not just about, oh well, yeah, I’m just going to I’m just going to think something is going to have is something’s going to change. Yes, it can, and so that’s what we talk about. We talked about you know, can hear what people saying. Well, I don’t want to have false hope. I don’t want to just get my hopes up for something that’s not going to happen. Right, and the idea of distinguishing what is true hope versus false hope. And we’re not saying, you know, pie in this guy, you’re going to be cured necessarily. Right, we hope for that. We hope for that, for sure, we hope for that. However, we are talking about something more so on the lines of, you know what, I hope to live ten years or whatever, however length of length of time, while still for having a productive life. Right, we’re talking about things like that, things that we can possibly control. Right. We don’t say that we can control everything where we understand that, but let’s try to tackle the things that we can and be hopeful that what we’re doing is going to make a difference in how our body acts. And there are so many new treatments out there. Compared to when my mom was diagnosed in the S, the last ten years there has been an explosion of new treatments and developments in Parkinson’s disease. Well, and something that you bring up, which I obviously specialize in, caregivers. HMM. There’s some statistics out there that ninety one percent of family caregivers, and I think that that’s very accurate, are suffer from some form of depression. Right and and this is the thing that’s hard, you know, when you’re caring for a loved one, if you’re caring for a loved one it has Parkinson’s or another type of disease, you’re going to be in a situation where your we’re going to feel like, you know, there’s no out of this until they die, right. It’s and that’s not it. That’s not a thing to look for. So you look for, you know, how do you find hope as a as a caregiver or is a family member? You know, that’s that’s the big question. So and one of the things. You know, there’s different ways that my mom did this and one of the things that came up was a term called hope models. And if you think about it, you we all have someone in our life that we look up to and go that person did it, therefore maybe I can do it right, sport, in whatever. And so we talking about hope models in the world of Parkinson’s. And again I keep referring to Michael J but there’s one example of someone who’s lived it as absolutely you know. Long has he been diagnosed? Well, this he actually got diagnosed at the same time my mom is. So He’s been thirty years in and but he was much younger, of course. He was in his late s when he got diagnosed. Amazing. Now I do hear an argument from my listener readers who say, well, but he’s got access to all the treatments and everything else. True, he does have the finances to finance. However, that doesn’t make him immune to everything that Parkinson’s don’t throw at him. Right. So he’s still just a human being like everyone else, and we have countless there are tons of people in this world who have survived Parkinson’s from many, many years without it impeding largely on their on their life, and that’s what we’re trying to get people to be hopeful about. And if that’s not your Parkinson’s route, if yours is a shorter term, it’s trying to get people to be hopeful about. Okay, what, what legacy can I leave behind here? Some practical things that we can talk about. It’s not giving up in the moment and saying if I’ve got a year left, and I don’t want to be Morbid, but it’s there is a huge acceptance here and it’s saying I’m going to do great with what I have and I’m going to leave something for my family. And these are hard, hard topics. But because I don’t want to leave out people who are going to say to me, well, my love went only last to three years. Your you got lucky, you got thirty, and so I don’t want to be insensitive to those people, I want to say, but okay, meet them where they are. Let’s do our best to find something out of something good. Is a possible to find something good out of something bad and well, and I think you know, first of all everyone we are talking to Leanna Marie, and she is the founder and CEO of all about Parkinson’Scom and it’s an amazing form to support families. And I also want to get back to the topic of you know, if you’re a caregiver of someone with Parkinson’s or any kind of condition, you know there’s going to be hard times, absolutely, but there’s also going to be these amazing miracles along the way. It’s being open to see them, you know, being open to having the privilege of walking that life with them. You know that that is a very sacred part of their life and have that type of a privilege to be that caregiver or be that family member that is there with them. It’s just reprogrammering your brain, basically, is I mean, it’s am I am I on the right track? Yeah, I mean there is adaptation, like I said earlier, it’s there. We start with accepting where we’re at. We’re not resigning ourselves to horrible length of time with our loved one, but each step of the way we learn and grow, and that’s from my mom and i. that’s what we had to do. We just said, okay, well, you know, we can get it. We can. So we’re stuck here, for example, in the middle of them all. Okay, the music’s not working. What are we going to do? Okay, well, we can get really angry and poed at this disease, which we do and people do, and that’s okay and it’s okay and it’s okay, and that’s what exercise is great for, if you can keep doing exercise. I cannot stress that enough. That’s one of the major discoveries. I don’t think it’s like that. That big surprise that it’s one of the major reasons why people are able to prolong their disease or, sorry, prevent it from progressing right, is because because exercise is really helping people, and so that’s one gets here. Doorphins. Absolutely, and so there’s science to back that up. So if you want you can google it. But you know my mom, we would just get through each face. So some phases she’d be in a lot of pain. For example, she had a condition where her one foot kept twisting in, you know, and and it was really painful for her to walk on. We went through probably about a year two where we’re doing physio and I don’t know what happened, but all of a sudden that stage went away and so we’re like, okay, interesting. So that went away. It wasn’t something. I mean, we had physio, we went through this, and then a little bit of medication adjustments, I suppose, but then we went on to the next thing. And then we had double vision. She had problems with double vision, and so we’re like, okay, what are we going to do about that? And we just went one, one challenge at a time, one step at a time. And again, I’m not saying Oh it was so easy, but we did do what we had to do. We did what we had to do and and again it was like bring it out. She’s like, okay, you know what, what else can you throw up me? We’re kind of that fighting back kind of thing, right, because what’s the alternative? Well, and you’re going back to the initial model, right. Concept, that what you were saying, like how do other people if they did it, then I can do it right, and I think that’s so powerful too, because it helps you understand that you’re greater than you think. You are. Absolutely you are. You know, and and that’s the thing that I think that you know when you’re there providing a forum for people on your website, that is absolutely something that can help families. Absolutely. Then you can see, you can hear from other people, Hey, have you tried this or have you tried this? And then it enlightens people. They say, oh well, you know what, I hadn’t thought about that before and maybe that that’s something that my loved one could try. If you’re a caregiver or if you’re someone with Parkins’s, you like wait, you’ve been living ten years and your and you’re still working or you’re still doing this or you’re still running marathons. All my goodness right, it’s amazing. So these are things that we have countless stories of people who are doing incredible things and you are writing a book just about this topic. Tell us about your new book. So, Parkinson’s path. We’re walking people through the various stages of Parkinson’s in terms of how can I have hope at the beginning and in the middle of my disease or later stages of the disease? What how can I find meaning in all this that I’m going through with a chronic illness? And, most importantly, how can I be happy? Is it even possible to be happy when I am challenged with this disease, and what does that look like? What is happiness look like with someone with Parkinson’s and right and talking about all these stories of people who have overcome challenges, whether it be through their faith or for just their team. We write about that. How important is to have a great team around you. That’s what my mom had hope in me. I I’m not putting myself on a pedestal, but again, it was having hope in the people around you and that they’re going to help you make it through. Well, we have help just from talking to you. So I’m so glad you’re on the show today and we look forward to working with you against it. Thanks. The receding Parkinson’s path podcast is provided by Leanna Marie, with all about Parkinson’s and answers for elders radio. To learn more about LEANNA’s story, her books, the Parkinson’s wall of honor and more, go to all about Parkinson’scom