When Janet Kearns first faced the reality of Parkinson's, it wasn't just a diagnosis—it was a shadow of her mother's own struggle with the same disease. On the Parkinson's Empowerment Podcast, Janet's profound story unfolds, revealing how denial morphed into determination. Through the echoes of the past and the challenges of a global pandemic, Janet shares how exercise and the solidarity of a community became her cornerstones in the battle against Parkinson's.
In a candid exchange, we discuss challenges that can arise when mobility challenges are not apparent to those around you. We illuminate the early signals of Parkinson's and Janet's personal tactics for maximizing her medication's potency. Then, pulling on the gloves, we celebrate the lighter side of living with Parkinson's. From 'fighter names' to friendships, Janet and I punch through the notion that this journey is a solitary one. The laughter in a boxing class is just as essential as the jabs and hooks—it's about fighting back with joy.
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Start for FREE
Check out our website www.safeathompt.com
give us a call at (585)398-6050
or send us an email at robin@safeathomept.com
Thanks for listening!
When Janet Kearns first faced the reality of Parkinson's, it wasn't just a diagnosis—it was a shadow of her mother's own struggle with the same disease. On the Parkinson's Empowerment Podcast, Janet's profound story unfolds, revealing how denial morphed into determination. Through the echoes of the past and the challenges of a global pandemic, Janet shares how exercise and the solidarity of a community became her cornerstones in the battle against Parkinson's.
In a candid exchange, we discuss challenges that can arise when mobility challenges are not apparent to those around you. We illuminate the early signals of Parkinson's and Janet's personal tactics for maximizing her medication's potency. Then, pulling on the gloves, we celebrate the lighter side of living with Parkinson's. From 'fighter names' to friendships, Janet and I punch through the notion that this journey is a solitary one. The laughter in a boxing class is just as essential as the jabs and hooks—it's about fighting back with joy.
Buzzsprout - Let's get your podcast launched!
Start for FREE
Check out our website www.safeathompt.com
give us a call at (585)398-6050
or send us an email at robin@safeathomept.com
Thanks for listening!
Hi, I'm Robin Barclay and I'm here today with Janet Kearns for the Parkinson's Empowerment Podcast. Welcome, janet.
Speaker 2:Thank you, I'm glad to be here.
Speaker 1:Great. So, janet, you've been coming to rock city boxing for a few years, on and off to begin with, but now you're back, right.
Speaker 2:Yeah.
Speaker 1:I mean COVID interrupted it a little bit, right, right, yeah. So can you kind of tell us when you were, how long ago you were diagnosed?
Speaker 2:I was diagnosed about five years ago.
Speaker 1:Okay.
Speaker 2:My sister-in-law. I happened to have a brother-in-law who lives in Germany and I was visiting my brother-in-law and sister-in-law in Germany and my sister-in-law, who was a doctor, said you have Parkinson's. Okay, I said I do not. She said you do. I could see this was not going anywhere fast. So I said I'm here for two weeks in Germany and if you say nothing more, I will go to my primary doctor when I get home and have him give me his diagnosis. Yeah, my sister, my sister, my mother had passed away from Parkinson's and I did not want to have that disease. Yeah, so I came home, I went to my doctor. He sort of laughed when he heard what I was coming in for. He did a five minute exam and he said you have Parkinson's.
Speaker 1:Okay, oh man, I completely understand that that is not what you want to be told when you go on vacation, is that? Hey, I think you have Parkinson's. So I understand completely how you reacted and you did agree to go to your doctor when you got home. I did. Yeah, I also want to touch base on the. You said your mom died of Parkinson's and I don't know what her symptoms were and what other comorbidities she may have had, but usually people don't die of Parkinson's, at least these days.
Speaker 2:Right.
Speaker 1:They die with Parkinson's. So there's Parkinson's and then there's other diseases that kind of fall under the Parkinson's umbrella that share some of the same symptoms but also have some other symptoms in other parts of the brain are affected as well. So there's different versions and variations of the Parkinson's Right. So typical Parkinson's. You know, we can really do things like the rocksteady boxing and things like that. We can help people with Parkinson's as well. But so again, I just wanted a touch base on that.
Speaker 2:Right yeah, and I do know that she did everything she could to make it the best outcome. No, the worst outcome.
Speaker 1:The worst outcome.
Speaker 2:Okay, so she's a wonderful mother, but is a role model for a Parkinson's patient. Yeah, she was exactly what not to do. Yeah, that has helped me. Yeah.
Speaker 1:But that was a while ago too, and even when I started doing therapy. You know, I graduated from PT school in 1999, the 1900s. We still weren't really saying to people we didn't know. You know how much the forced, intense exercise can help and just you know, even today, like there's not enough people that are getting sent to therapy sooner than later.
Speaker 2:Right, but go ahead.
Speaker 1:What else do you want to share?
Speaker 2:So I went from my primary doctor, who said yes, you do have it, to a neurologist who said you do have it and you should try some exercising. And I picked up some pamphlets and Rock City boxing was one of them Rocks which really intrigued me, yeah, and so I came and started attending class here.
Speaker 1:Yes. And well, but before that we did, didn't we do some PT first? Yes, yes, because we evaluate everybody before they start, and we decided that, yes, so the LSVT, but which you're still doing every day, right, of course, yeah, well, if you slacked off, make sure you get back to it, but yeah, go ahead.
Speaker 2:Yeah, and I liked the classes here, but then COVID came along.
Speaker 1:Yeah, and.
Speaker 2:I also realized that this was 20 minutes from my home and there was an individual physical therapist that was recommended five minutes from my home and obviously I said to myself well, I'll do the five minutes.
Speaker 1:Yeah.
Speaker 2:Single person should be better. It was five minutes, it was not better and I knew I was needing more than I was getting. So I came back to the Rock City boxing and it has made a tremendous difference in my life.
Speaker 1:Yep, good, the Rock Steady Boxing. Right, rock Steady Boxing. Everybody says Rock City, whether it's because you went Rochester, everybody was. I think there was a was or is a Rock City Boxing, but it's Rock Steady Boxing, but that's okay. Yeah, so you came back and, yeah, I think we did a little tune-up too, didn't?
Speaker 2:we yes, we came back and we did a reevaluation and I maybe it was just the timing too that I realized I think the difficult thing with Parkinson's is there's no visible sign that you have the disease and there is no real way of calibrating how severe your case is. So it's hard to know if I exercise this way, this scale will go up or that scale will go down.
Speaker 1:Yeah, well, I mean the signs are. By the time you're diagnosed, our motor usually the non-motor show up first. By the time your motor symptoms show up, you've lost 60% of your dopamine producing cells roughly that's when the motor symptoms start to show up. And then it's just yes, you're right, there's no tests they can do specific.
Speaker 2:that says yep, but it's a combination of symptoms.
Speaker 1:A lot of people are diagnosed initially with essential tremors, because that's all that's showing up at that point and so, yeah, it's a combination and then it's individual. Every person with Parkinson's is one person with Parkinson's, so you really. That is another reason why it's important to come as soon as you're diagnosed, get an assessment, get your PT likely and then get into a class. And then I honestly, after the initial evaluation, people progress so much, they do so much better and then if they start to slide backwards a little bit, they're in class.
Speaker 1:We keep an eye on them and even now we're having a. We've got a sign on the wall that if we haven't reassessed you in the last six months to sign up, come in for an evaluation. And for some we might say you're doing great, keep doing whatever you're doing, and for others we might say you know what? We're seeing a little downward trend in your ability to get off the chair. We noticed you are. You know your balance is off a little bit. Let's get you going on some PT for three to four weeks and kind of re, get a little tune up so you can be your best.
Speaker 2:I can see that. So, and the other thing I like about the class is the one I'm attending we have four, three or four instructors working with us and they each have a different view and they are so encouraging. They and they laugh with you, not at you, and you need that kind of encouragement to go forward. And the group is so diverse and yet we have the common thread of the disease that I enjoy hearing what experiences the other people have had and how they have learned to cope with the disease.
Speaker 1:Yes, there's a lot of camaraderie, even, yes, we have a pretty big afternoon class, and so it's what we I like to call our morning class, our faster pace class, and our afternoon classes, our slower pace. We do the same things, but we may modify things a little bit, we may have a little more time between transitions between stations. But over in the corner here is where all the care partners sit and they're all chatting away and sharing experiences, and so it's good for the people who come to fight Parkinson's, but also the caregivers who come and stay can sit and talk about things they're doing, you know, to help and kind of support each other as well.
Speaker 2:Yes, I hadn't thought about that. I never friend who comes into the corner and she actually helps me do understand what the program is and how I'm doing and the fact that, no, my hands really aren't up and I'm mostly lifting my hips off of the floor and they really are not off the floor. But, it's all done in such a positive attitude that you just enjoy coming and you feel better afterwards.
Speaker 1:Yeah yeah, we did some today. We was forgotten parts week, forgotten parts week. So we do like hands and facial expressions and we didn't do a lot of feet today, but I have to tell everybody where they're clean socks on Friday and then we can do take our shoes off and get you know, do some work with our toes and our feet and fingers and just things that you know we don't always get to when we're doing the classes. So we did what were some of the expressions we did? Oh, angry or no, confused. We did Surprise it stinks in here they. So they had to make the. Everybody had to kind of make those facial expressions while they were boxing. And then we went around while they were boxing and look, we're looking at their faces, making sure everybody was, and the corner people were great helping people. Here she comes. You better make the surprise face.
Speaker 2:Yeah, so I have to tell a story of myself.
Speaker 1:Okay.
Speaker 2:Almost every Monday, catherine comes, who's my corner, to pick me up, yep, and I tell her I can't go, I'm not up to it, I'm not feeling well enough, I just can't do it. And she says why don't we at least drive there and see how you feel? So I agree, we get in the car, we get here, I start out and by the end of the hour, or an hour and 15 minutes, I am feeling so much better, I am able to do all the things I said I couldn't do, and Catherine is kind enough not to laugh all the way home. But it really. It is amazing what a difference it makes in your next couple of days when you've been to class.
Speaker 2:Even though I try to do them at home, it's so difficult to discipline yourself and you just can't do the variety of exercises and experiences that the leaders lead you in.
Speaker 1:Yep, yeah, it's definitely a lot easier when you have other people around you, just like when I'm running and I know I need to go run if I have somebody coming to get me, saying, come on, we're going get off the couch. It's so much easier. And then you do feel so much better afterwards Like, oh, I'm so glad I did that. Yeah, for sure.
Speaker 2:I think the other thing that's difficult sometimes about Parkinson's is there's no visible sign that you have it, so sometimes you have to ask for help. Yes, people don't realize that step is too high for you. Or I went to visit grandchildren and I was trying to get out of my seat on the plane Yep, and the people were sort of anxious to keep going.
Speaker 1:Oh yeah, everybody always is on a plane.
Speaker 2:And then finally I said I'm sorry I have Parkinson's and everybody backed off and was so helpful and I said I should be up front.
Speaker 1:You're right, I see what you mean. I didn't understand you completely what you were saying before. But yeah, so you don't use a cane, you don't use a walker, right, you don't really. I don't see tremors. Do you have?
Speaker 2:your, do you have? Yeah, no, I don't. Oh people, many of my friends not many.
Speaker 1:Some of my friends think I'm faking them out Because you don't have tremors. Yeah, I think it's 30% roughly. Don't have tremors, yeah, so yeah, you're right.
Speaker 2:For you there's no, really there's no way you would know, and I'm a little bit of an actress, and when people are around I'm more up and more active.
Speaker 1:Yeah, were you. So you were a librarian, right, right, yep. And so did you retire before you were diagnosed.
Speaker 2:Yes, I would have been retired about three years before I was diagnosed. Okay.
Speaker 1:And what were your first? What so? Oh yeah, no, I should. What do you think that was it your? Was it your sister-in-law?
Speaker 2:Well, this is funny because my sister-in-law is the one who told me I had it.
Speaker 1:She noticed it in Germany.
Speaker 2:Germany and she noticed it from my stature. My, you were kind of leaning forward and leaning forward in things.
Speaker 1:I wonder if you were moving slower too Well.
Speaker 2:I, we, in 1986, moved from Buffalo to Rochester and I lost my sense of smell, oh yeah, which I thought was something in our house that was causing it. And then when the diagnosis came from Parkinson's, I said, oh no, it really was. So some of those things had happened beforehand, but I you don't hear a lot about no, not you did maybe more now, but yeah, yeah, and you're right, and that was back in the 1900s.
Speaker 2:So I think I definitely had had the disease longer than I thought. But I was certainly glad to be aware of it as soon as I was because, it made it easier to stop the deterioration.
Speaker 1:Quite a bit Right, so she may have noticed you were moving a little slower. Anything else she picked out that you remember, or?
Speaker 2:No, it was purely from my posture, Posture okay.
Speaker 1:Wow, she had a keen eye. She has a very keen eye. Is she a neurologist or is she primary?
Speaker 2:She's an OBGYN. Okay, good for her, but my husband also had. He had passed away, but he had Alzheimer's and she diagnosed him a couple of years before the doctors concurred. So she just was. She is an observer of people, yeah.
Speaker 1:Wow. And so how long after you were diagnosed did you start medication right away?
Speaker 2:Yes, and I had to work. I had to work with the medication a little bit. I started right away and then we increased it and I can tell the medication is wonderful, I can tell when it is wearing off. Yeah, and it is worth the effort to keep schedule and to build your life around it, because it not only doesn't make you be able to do things but how you feel. Like you get feeling sort of depressed and like this a dreary, dark world. You take the medicine and a half an hour later you say I can do this job with no problem at all.
Speaker 1:How long have you been taking it then?
Speaker 2:Roughly. I've been taking it for about five years Five years, Okay, Right and I'm still on a fairly low dosage. And the last time I was in to see my neurologist she said that I certainly hadn't gone backwards. In fact she thought maybe I'd gone improve some Good. And she said, if you need medication, we have a lot more medication we could give you. And I said I really want to stay on a slow dose.
Speaker 1:Are you on what 2,500? Like three pills a day? Or do you know what you're doing?
Speaker 2:I do four times a day, 10 milligrams or something.
Speaker 1:I mean the basic dose. I think is like a 2,500 tablet.
Speaker 2:But maybe it's 25. Then you'll have to add this part.
Speaker 1:But maybe, yeah, unless you're taking I don't know, but anyways, you're taking it four times a day.
Speaker 2:I take it four times a day. And again I was taking it, so I would. It was active during the night and the neurologist said to me why do you need it at night? And I said, well, don't I need it at night? And she said not, unless you think there's a reason. So I don't take it at night and I concentrate those four dosages during the day.
Speaker 1:Yeah sometimes. So you just take regularly. You don't take extended release at night. Then no.
Speaker 1:Okay, yeah, some people need the extended release at night or a dose later in the night because they tend to have maybe some freezing when they get up in the night to go to the bathroom or they're having. They're moving so slow that they you know they need that extra dose, but they, yeah. But that's great, that you are able to function and do the things you want to do and come to box and do your classes without you know Right and maintain that.
Speaker 2:I'm able to do my book club and the other activities. I have learned that I don't have the energy level I used to, but then again I'm 79. Yeah, you look great. So my friends who are also in my age group, who do not have Parkinson's, go wait. We have those pains and aches and we have those problems too.
Speaker 1:So I will tell you and I think I say this just about every podcast but the people who come here to work out regularly are much better off than a lot of people their age who do not have Parkinson's.
Speaker 2:So I can believe that.
Speaker 1:Yeah, mm. Hmm. Is there anything else on your paper there that you want to you? I know you wrote some things down that you want to share.
Speaker 2:Well, I just. There are two more things I definitely would like to mention. One is the education you get. We start out in a circle and the leaders explain why we're doing the exercises we're doing, and it's so much easier to talk yourself into doing the exercises when you know why and the reason for it. And there's also the variety. There's no way I would ever be doing this variety of exercises Today. We exercise the fingers and you say who needs that? But you do need your fingers to be exercised.
Speaker 2:So that part of the class also I think is very essential and makes a big difference in how you feel and what you can do Definitely.
Speaker 1:Well, jana, this has been great. You know, I think this podcast is so important to help people. The people that listen to it hear from other people with Parkinson's and what their experience has been and what they're doing for it, and I think you really helped a lot of people today. So thanks for coming.
Speaker 2:Well, I want to tell you that if you knew my friends, they'd say I am the last person to take up boxing. I'm a librarian, I read, and yet this is the most valuable thing I do.
Speaker 1:So great.
Speaker 2:So I really hope people will come and give it a try for a couple of times and not be afraid of being the class dunce, because I'm there, no, no. But I think sometimes I, when I started, I was a little concerned because I've never been athletic and I've learned it's not what you're doing, but how much time you're putting in and what's what's right for you.
Speaker 1:Yeah.
Speaker 2:I would recommend it highly to people to give it a chance.
Speaker 1:Good, yes, it's never too late. And you're right, we don't have professional boxers coming in here. We don't hit each other, fortunately. So, no matter how, even if you don't think you're much of an athlete, you've never been athletic now is the time to start getting that way, through the boxing class, through any other classes you can take specifically for Parkinson's, because it sure can help. And then, what is your fighter name?
Speaker 2:Oh, my fighter name is Daisy Mae Daisy.
Speaker 1:Mae.
Speaker 2:Very good yeah, everybody's got a fighter name and I thoroughly enjoyed making new friends also who share with me the Parkinson's, and that is a unique experience, so it's good to have that advantage too.
Speaker 1:Yeah, Despite the, you know why we're all here. We sure have a lot of fun, don't we? We do, Okay. Well, thanks again for coming. Thank you for having me. Okay, talk to you soon. See you at boxing Okay.
Speaker 2:Bye.