Lianna Marie describes her family experiences with Parkinson’s following the diagnosis of the disease. Her mother’s diagnosis was confirmed at 49 years old, when Lianna Marie was in her teens. Her mother had an arresting tremor, and the doctors assessed it as “the better kind” of Parkinson’s, and she was able to work another 10-15 years. Diagnosis for everyone is different.
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The following Parkinson’s path podcast is provided by leanna Marie with all about Parkinson’s and answers for elders radio. And welcome everyone to answers for elder’s radio and I am here with our wonderful Parkinson’s expert, Leanna Marie, from all about Parkinson’s and you are such an amazing asset to our answers for elders expert team and Leanna, welcome to the show today. Thanks for having me. You know you’ve shared with us a little bit about your journey, but I wanted to talk a little bit about you know, your mom has gone has gone through Parkinson’s and just recently passed away, but she lasted a long time. She lived a long time with a disease and I would love our listeners today to learn about what it was like you guys in the early stages of the diagnosis. So welcome to the show and and tell us a little bit about the early times. Okay, yeah, thank you. Um, you know, mom got diagnosed in the early s and she was actually officially diagnosed at forty nine, which back then was considered quite early, very but young. In fact, she had had it, though, for three years prior to that, and it was because her doctor, when she first went to a doctor, she had a little tremor in her left Pinky and she’s like this isn’t right, and she’d go to the doctor and he said, yeah, I don’t know what that is, but it’s definitely not Parkinson’s because you’re too young. So she was forty six years old. And again, at that time we didn’t know a lot about young onset Parkinson’s disease, which is what Michael J Fox had. So he kept sending her home and saying she kept coming back going you know this isn’t right, like you know your this is a lesson. You know your own body right. So always keep going and be insistent. So finally, over time he the doctor said, you know what, head to a neurologist. He referred to a neurologist and he and the neurologist did confirm, through various tests, they basically to preclude other diseases, that it was in fact Parkinson’s, and that diagnosis came out when she was forty nine. But again, to say she had had a three years takes bravery on your mother’s part for sure. When you think about that, you’re only in your forty. Sometimes so many of us avoid that, you know, hearing what we don’t want to hear, right. And yet she was different. She wanted to find out and she followed through, which for sure, you know, Kudos to her. Yeah, I mean I’m almost that same age now, and so don’t I’ve definitely thought about it a few times, going what would I do? And for sure I just know that she was insistent on this isn’t normal, I need to find out. So then when she did, and again none of the family knew. Maybe maybe my dad knew. None of us knew. I didn’t. Hadn’t noticed anything different with her, for sure. And so when she did finally tell us the family, and she didn’t tell everybody all at once, she just told a few people close to her. When she did tell us, it was again I was shocked because I didn’t even notice anything different about her. And then she pointed out, Oh, I have had this little pinky tremor for a little while and three years that we never even knew anyways. And again I was in my teen so probably she’s thinking, what’s the point in getting anybody worried about? A lot of people don’t want their loved ones to worry about them. So they don’t tell them for that reason. But I am thankful that she did tell us because earlier, the earlier she could get started on some treatment, and that again, I think too, is one of the reasons that prompted her to find out. I need to know because I want to get treated if this is something. So how long did she wait to tell you? For us, she was it was pretty pretty much right at the beginning. I didn’t. She’s not much of to hide. However, she was cautious about things like at work, her friends. One of the things at work, because she worked at a desk, she didn’t have to move around a lot. So I didn’t. She was pretty sure the doctor had assured her. Hey, guess what, you’ve got good news, bad news. You’ve got Parkinson’s. However, you have the quote better kind in terms of you have a tremor, arresting tremor. So therefore, this was she didn’t really understand, but this is what she was told, and you got the meaning. You probably going to have a longer life with Parkinson’s, not a short term only. So if there was something positive, and she told us that right away too, so we would feel better about it. Hey, don’t worry, this is the better kind, whatever that means. And so she was able to keep her job and he and the doctor even said you’re probably gonna be able to keep working for another ten to fifteen years, and she was no, no, it’s amazing. Yeah, so that was that was something that we came up in terms of do I tell my employer? A lot of people ask that question. It’s going to be a personal thing because some people worry about I’m going to get you know, they can they fire me? What’s going to happen? So that’s a an individual decision. But she she was actually quite close to her employer. I was a small company, and she was able to share the news and he was very good with it and he’s like, you know what, it’s not impeding your work, so we’re fine. And over the long term, like I said, she retired when she was, you know, in her late, mid to late s and that was fine with the company. Worked out well. So we were fortunate that way. And again, had she been a different kind of trade, some type of trade, then it might have been different, but because she was sitting at the desk and and she was still able to type and all that stuff right, any many years. So there was no problem there. So we are fortunate because of that. So, yeah, that was her diagnosisn’t really just try to to get as much information as we could without being overwhelmed, because that can happen. Yeah, and then somehow through this process, the two of you kind of came into this thing of we need to help other people, right, and so you guys started to kind of like you shared with me before, your mom used to have little pieces of advice or, Lily, a little revelations that she would bring to you, right, and is this how everything got started with all about Parkinson’s? Pretty much. Yeah, and so that’s what happened. Like when we went through this first I would say five to ten years. We didn’t there wasn’t a lot of major changes in her. It was she was noticing mobility challenges. For sure. Round I would say, you’re seven to ten and that’s when we said Hey, mom, let’s she would say, Hey, did I just discovered? We discovered music, or we discovered this or that that help her get through a doorway or how to get in out of a car or whatever it was, and she said, you know, all these things are just great tips that I’m going to share with other people’s right this book. But I guess for my main my main thing was realizing that diagnosis for everybody is different in terms of Parkinson’s. Is that snowflake disease where everyone gets a different tight like I don’t explain it, just like that’s what they call it, a snowflake, because just because mom had this, this, this, that means she has that correct and it’s so staying. Yeah, and so that was one of the things that we discovered really early when somebody said, hey, you should go to a support group, and mom goes, okay, she goes to support group and goes, oh my goodness, it’s a room full of people in wheelchairs, I am out of here. Wow. And so then we she said, okay, here’s a good piece of advice. Tell everybody not to go to a support group necessarily right away, because even she says, you know what, maybe one day my life looks like that, but I don’t need to be no reminded of that’s it. And and what’s the point? What would be the point for her? So yes, maybe one day I’m going to be in that space, although in her mind she was like, I’m absolutely not going to be in that space, you know. So that was one of the big things we learned right away, like almost right away. So we are talking again to Leanna Marie, and she is the founder and CEO of all about Parkinson’s and Leanna, you have two books out. One everything you need to know about Parkinson’s, which is just a basic overview in plain English, right, yes, not not medical, you know, jargon that most of us don’t understand, which is really great, and then everything you need to know about caregiving for partners Parkinson’s, which is really you know, one of my next questions, and being a caregiver. There’s all kinds of tips. And you talked about the support group. Tell me how families can support those with Parkinson’s along that journey, I mean because, like you’re saying, it’s a snowflake disease. You don’t necessarily know where everybody’s benchmark is or anything like that. What would you advise? Yeah, and that’s that was definitely a trial it around. My part is figuring out what did mom need the most. So I’m a kind of a RARARA encouragement. You can do it, mom, you know, let’s go that’s all she needs is just a little kick in the pants to get go on, and sometimes I realized, you know, actually she’s really feeling depressed right now and that’s not her fault. That’s part of the per Parkinson’s package for her, and so maybe she needs a tweak in medications or maybe we need to go back to the neurologists, which I often accompanied her to these appointments be and that was something that really was helpful, because when you’re going through some things and the doctor’s explaining stuff, you can’t always hear everything he’s saying. So it’s always nice to have someone there with you if you can, as a caregiver, go to those appointments if your loved one will allow you, and she was absolutely on board. Yes, please come with me, and that was something I could do with her. That was very helpful. And then also help me to understand. Okay, asking the RELIGIES. What are some best things that I can help her with? Simple things at the beginning was just making sure my mom got our medications on time, and as everyone with Parkinson soon learns when they’re diagnosed, is that it is one of the most paramount important things you need to know, is getting your medications every three hours. So those are some things, or whatever your doctor prescribes, but so that you have an even distribution throughout the day are and so those are some key things that I help with. In terms of practical things that I helped her with, I was a caregiver on site a lot of the time and other times I was living away from her. So there’s the Longdistance caregiving where I was doing a lot of support through arranging a help for mom. Like here I’m arranging a massage appointment or a physiotherapist appointment, or I’m arranging this, that or the other thing, and it’s just kind of like so they don’t feel overwhelmed, you want to be there to help them so that it’s a get it’s just a support. And so how can I best help you? Some people, unfortunately, don’t want a lot of help and it’s tricky, special in early stages, I can imagine. Yeah, when some and and you know, I’m sure it takes a little bit to kind of digest everything. You know, if you’ve had this diagnosis, it’s it’s okay if they don’t want to share right away and and understand that this is a slower progression type situation in most cases. I’m assuming. I mean, are there other forms of parkinsons that can escalate? There are, there are, and again I we want to doctor to speak to the specific kinds. I mentioned them briefly in the in the first book so that people can understand. But in terms of that point of acceptance is a big thing and you know, we want to distinguishes between acceptance and resignation. So the idea that I’m accepting this, I’m not resigning myself to a life of dread and horrible I love the right and so that’s where my number one my mom’Si like advice was, you know her name on the forum. Her her code name was keep on trucking. She was all about keep going right. We don’t have to know what tomorrow is going to be, and that sounds so cliche, but it’s true. Like one day at a time. You have to do that with Parkinson’s. One step at a time, all that, and that’s that’s really the most important thing. Well, and I think really what’s most important too for the family members is to get educated. I’ve learned as much as possible and they can do that through your website. CAN THEY NOT? For sure? Yep, everything you need to know, that’s fine, and your books. Well, leanna. It’s so great and you guys can absolutely learn more about leanna at all about Parkinson’Scom and we’re just thrilled to have you on the show today again. Thank you, leanna. Thank you. 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 to all about Parkinson’scom
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Originally published April 05, 2019