Lianna Marie is the author of Everything You Need To Know About Parkinson’s Disease and Everything You Need to Know About Caregiving for Parkinson’s Disease. Her mother was diagnosed 30 years ago, back when books on the topic were written for doctors, rather than patients and caregivers. There are different types of Parkinson’s, every case is different, and there are other neuro-degenerative diseases similar to Parkinson’s.
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The following is a podcast from a qualified senior care provider, hurt, on the answers for elders radio show. And Welcome back to answers for elders radio everyone, and I am here with a brand new guest. There’s a lot of families out there that may have a loved one that’s been diagnosed with Parkinson’s disease and it you know, you’re hearing a lot more about it and we are here with a very special expert and published author, Leanna Marie. LEANNA, welcome to answers for elders. Hi, Susanne, I’m I’m very interested in your store. You’re obviously got into writing about Parkinson’s and helping due to your own personal story. Do you want to share a little bit about that? Yeah, sure, actually, my mum, she’s the reason why I wrote the books. She was diagnosed about thirty years ago now and she was in her late s and back then this was at the early time of the Internet where there wasn’t a lot available outside of just going to a bookstore, and a lot of the books that we read, that she found, were written by doctors for doctor’s kind of things. So she said she’s about ten years and her diagnosis and she’s like, you know, I had to learn everything on my own pretty much, and wouldn’t it be cool if there was something written by someone who had gone through everything that she had and that can in language that you can that we could understand? Yeah, yeah, so obviously, you know, it’s interesting because because we, as the public, we think of Parkinson’s disease, of like Michael J Fox Right, or you know, or Muhammad Ali. Didn’t he have Parkins? Yeah. So, so those are the kind of things that, you know, we think of and just a general thing, but we really don’t understand what the disease really is. Why don’t you explain a little bit about your experience with helping your mom and what what that’s done? Yeah, I mean, like you said, Michael J, he’s the most public figure right now and he’s done extra actually quite well with the disease he’s had. He in fact was diagnosed right around the same time my mom was, and so she could identify with him right away. He and, you know, some people say, well, he has got a lot of money, of course he’s fine. Well, I mean, you can’t just beat a disease because you have money. However, he has had the odd surgery here and there and that’s big a successful and and not everybody looks the same. WHO said Parkinsons? That’s the number one thing I’ve been trying to let people know. Just because one person maybe within a couple of years they lose all the mobility, doesn’t necessarily mean that you will be that same person. So, and that was the experience with my mom. She got, quote unquote, the good kind of Parkinson’s and that she didn’t really notice that any major debilitating symptoms until about ten, fifteen years in. So that was really good. Her doctor told her that right away, you know you’ve got this this kind and hopefully you should be able to hold on your job for another ten to fifteen years, which did. and well, yeah, so there are different types of Park and correct this is interesting. So it’s like a little bit about that. That’s why they call it a snowflake disease or a boutique illness, because every case is different. So, though there are very similar symptoms, you’ll see people challenges with mobility. You’ll see that kind of thing all throughout the tremors. Yeah, the tremor. Some people have it on one side, some people actually don’t have any tremor and that was what my mom had a tremor. I know that’s something that not everybody knows, but she had a small tremor on her one side and that’s when the doctor said, Oh, you’ve got the good kind because you have a tremor. Again, that’s not to say that there’s a it’s good that you’re diagnosed with Parkinson’s, but because they know more and more now about it, they are able to distinguish between and there’s Parkinson like illnesses as well. So again, that’s your doctor will help you find out what kind you have. Right. Yeah, right, and and obviously it I’m a I’m without somebody that knows very much. I don’t know hardly anything about it, but it is a something that happens to a brain. It’s a brain disease, right correct. It’s near or degenerative in that there’s a transmitter in your brain, that dopamine is to make it sound easy. It’s basically that that is being destroyed or it’s being eliminated. Now they if they knew exactly what was causing that, they’d have a cure. Recently they found something. They thought it started in the brain, but more recently researchers and doctors have discovered that it might be starting in your gut, which is a really interesting change in research, like now chemical situation. Yeah, they’re they’re again, if they knew exactly they would know for sure how to cure it. But there’s some connection between its starting perps down in the gut and then being transmitted up to your brain, and so they’re doing a lot of research there. In fact, recently they came up with a study that said if you have lost your appendix, you have a twenty five percent chance less chance of developing Parkinson’s. So why is that? Why is it the if you’ve had an append deck to me that you’re that must chance. We are. So they’re discovering right. So they’re discovering some neat, neat things are on the horizon for treatment because they found this link between the gut and the brains. So we’ll see what happens there, but we’re hopeful that that means that they’re getting closer and closer to finding right right. Yeah, so obviously Parkinson’s is known as being kind of a long progression right in chronic yeah, it’s a chronic condition that, but it will eventually be terminal. Is that correct? I mean I don’t even know. Right. So they don’t say you die of Parkinson Lit behimercy. Right, it’ll be complications due to MMM, and one of them, one of the main ones, would be because you lose your ability to your throat muscles. You that they don’t work as well anymore. A lot of people have trouble swallowing and therefore end up choking. Joking. Yeah, unfortunately, but again, that’s we’re talking many, many years down the line and it depends. I don’t want to make it sound like this. No horrible, dreary diagnosis for everyone, because again, my mom is thirty years in and still chewing, still still doing great. Yeah, and that in that regard. Yeah, yeah, and and, as far as you know, taking care of a family member, you know being a family caregiver. You probably in many cases you’ve been. You know, you have a you you’re not a one on one family caregiver with your mom, because you, your mom is up in Canada, or less her heart, and near down here and newly married and and living in we have the wonderful blessing of having you living in our backyard in Seattle. So that’s a wonderful thing. So what’s that been like for you? I guess when I’m asking, is being a long distance long distance. Yeah, gi her. Yeah, and when I first, when I first because she’s in near Toronto Ontario, and when I first moved out West to western Canada, that was a challenge and she said follow your heart. At that time I was I was drawn to the ocean and many other things. And Anyway, she said you got to follow your heart. Choose wonderful cheerleader for my life and just said, if that’s your life, you got to be out there. And I said, but how can I care for you long distance? Now she she had wonderful husband who was caring for my Stepdad and and long distance is a challenge. But you know what, what’s some great inventions called skype and I could see her. I had a standing appointment every week where I we hooked up the Internet and and great, see you’re on Skype, and that makes a huge difference for her and for me. It’s like because if you don’t see your daughter for that long and can be very hard, and Mike Guyes for me when I didn’t see my mom, but then as soon as we have skype. I still do that every week. Every Tuesday I have wortant. Yeah, we have that. Even now. My mom is in a home, but we have a my cousin comes in, sets up the Internet and gets her on skype and that. Yeah, so we see her. So we see facetoface every week and you work with families now and your website. Tell us a little bit about your website. Yeah, so all about Parkinson’scom is my website. We started that in two thousand and five, so it’s been up for a long time and we essentially we’re providing resources to help people with Parkinson’s and their caregivers. So right now those are the two books that I’ve written on those topics. And then we have a forum as well where we trying to connect people from all over the world, because we know Parkins has isn’t just in Canada or the United States. It’s in Australi UK India, Spain, I mean we’ve had over fifty countries in the world that have joined. So for sure it’s yeah, we’re trying to make it known that it you know, this is the one thing we have in common and how can we help each other? Yeah, so that and obvious slay. The holiday season is coming up now, so let’s talk a little bit. We’ve got about three minutes left in the show. Tell us a little bit about how we can support somebody in the family that has Paul Parkinson’s. Yeah, so, and the holidays, I think of a lot of eating. That’s me anyways, when I’m going for tooky dinner and whatever. And I think of all the Times that we sat down with mom for Thanksgiving and some specific things that were challenges for her. And, as I said earlier, when we’re talking about, for example, people with Parkinson’s, you may not know that they have challenges with swallowing, and so you know and if in fact happen when one year that the dinner table mom started choking because again she just needed more liquid or less big chunks of food or whatever, and so we then made adjustments for next time. But those were just some things at the meal time that were significant. Also, we learned quickly to have a lot of Napkins around, Nice Looking Napkins, not to say like mum needs a Bib, that right, that’s not good. You didn’t want to say that, but she definitely and these were things that she could be embarrassed by. So when we had a lot of people come over, we wanted to make sure she didn’t feel that way. So we had she had, you know, a fancy looking scarf for whatever around that would help her because I again, people with Parkinson’s also have trouble with drooling sometimes and that can be yeah and dursing or frustrating because they have those shakes that you might see somebody on TV with, like you may have seen Michael J with. It’s called Disk in Asia you may have seen him Sha gang, and that can make meal time really hard to so those are some things we need to think about when you’re in someone’s home. If you’re going to visit someone and you’ve got really crowded areas, that can be extremely hard for someone with Parkinson’s because they can freeze. Their mobility can just completely stop if they go from a big open area to a small area. They don’t exactly know why that happens, but for people with Parkinson’s, their brains they just have this challenge with changing so to go big too small right. So that those things it’s just good to be aware of when you’re having someone over for dinner with Parkinson’s or whatever, just to clear out areas, as in anyone who might be see older and have some challenges with walking or that kind of thing. You want to get all rid of all the rugs, scatter rugs and all those things that people can trip on, that kind of stuff. So I think of those things. We had a completely we got rid of all the rugs in our house. Like we just had completely bare floor and mum love that. She took off her socks, she were bare feet because she like feeling connected or with the Yes for her yes and again, which just family around. It wasn’t like wasn’t this big. We had to be formal and she had now this, you know. We also even had a chair on wheels, like the one I’m sitting on right now. Yeah, so, so she could scoot around if she couldn’t get back up. That’s such important. That’s so important and I think to just really coming back to, you know, the things that we’ve talked about is just don’t overwhelm a senior and especially, I can imagine, with Parkinson’s, too many people on them at once. Yeah, is is got to be hard, right. And Yeah, and we all probably say this a hundred thousand times but you know, no stress and stress exacerbate symptoms of people with Parkinson’s. So it’s bad for me, it’s really bad for them. Yeah, so how do we get more information about you? If you can, go to all about Parkinson’Scom and there’s a contact page you can. You can email me there or just check check it out and see you can get the books through there. There’s a link to the Amazon site where you can get hard copies. But if you want to send me an email, I will gladly email you a book for free, whether your caregiver or you know someone with Parkinson’s, I’d be happy to give that to you free. Well, Leanna Marie, I’m so glad you’re here and and really it is we are so blessed to have you on answers for elders radio. Thank you so much for being here. Thank you. Answers for elders radio show with Susan Newman. Hopes you found this podcast useful in your journey of navigating senior care. Check out more podcast like this to help you find qualified senior care experts and areas of financial, legal, health and wellness and the living options. Learn about our radio show, receive our monthly newsletter, receive promotional discounts and meet our experts by clicking on the banner to join the Senior Advocate Network at answers for elders, radiocom. Now there is one place to find the answers for elders
Suzanne Newman, host of the Answers for Elders radio show and podcast, proclaims often, “Caring for my mom was the hardest thing I ever have done, but it was also my greatest privilege.” Following a career of over 25 years in sales, media, and marketing management, Suzanne embarked on a 6-year-journey caring for her mother. Her trials and tribulations as a family caregiver inspired an impassioned life mission outside of the corporate world to revolutionize the journey that so many other American families also find themselves on. Answers for Elders provides education, help, and support to families, caregivers, and seniors across the country who are experiencing their own unique journey within the complicated world of Eldercare. Each week, Suzanne is joined by vetted professional experts in over 65 categories including health & wellness, life changes, living options, money, law, and more. Suzanne lives in Edmonds, Washington with her husband, Keith, and their two doodle dogs, Whidbey and Skagit.