#ThisIsMyJourney Chapter 11 - Tanya Lesstrange's Parkinson's Journey

Tanya Lesstrange, 52, has been living with Parkinson's disease for more than 10 years. She was officially diagnosed in 2015 after initially being misdiagnosed with essential tremor in 2013. Despite the challenges, Tanya has shown resilience and determination in managing her condition. She adopted a proactive approach by engaging in regular exercise.

Her commitment to being her own role model, pursuing education, and setting goals demonstrates her resilience and determination in the face of Parkinson's challenges. Tanya encourages a positive outlook, advocating for self-care and a focus on the good aspects of life.

In this interview, we will delve into Tanya’s experiences, challenges, triumphs, and the lessons she has learned in navigating life with Parkinson's disease.

Can you share with us your journey with Parkinson's disease? How & when were you diagnosed, and how has the progression of the disease impacted your life?

My name is Tanya Lesstrange. I'll be 52 this June and I've had Parkinson's disease for probably more than 10 years. I was diagnosed in 2015 after being misdiagnosed in 2013 with essential tremor. When my Parkinson's symptoms initially presented themselves, I was under a lot of stress which I think is fairly typical with a lot of other people with young-onset Parkinson's disease. Me and my ex-husband, we owned a very busy business. We had a lot of employees. We were responsible for a lot of people, and a lot of households as the owners of the company. And so, I thought I was just stressed out. I was getting so stressed out that I would shake. I thought it was just stress. My first symptoms were a tremor on my foot, ankle to my right foot. Then it kind of progressed to sore muscles in my neck and shoulders and I would get really stiff and sore. I was more fatigued. Fatigue was a massive thing for me in the very beginning. Actually, what happened is, just before I turned 40 in 2012, my friend at the time, she said ‘’Hey, I want you to come and do this thing called the Ride To Conquer Cancer with me’’. We rode from Vancouver, Canada to Seattle, Washington. So, it's about 125 kilometers on a pedal bike in two days. They have this big celebration down there. And when you get there, you have to fundraise, all that. So, I was training pretty hard for that. When I went and saw the doctor in 2013, my general practitioner, he ordered a bunch of different tests to rule out things like multiple sclerosis and things like blood work. And then, he sent me to see a neurologist in another town here on Vancouver Island. He said, ‘’You're too young and you're the wrong gender’’ and I said, ‘’For what?’’, he said ‘’Don't even worry about it. It's essential tremors.’’ I had no clue and I was a nurse. I was an LPN a long time ago, licensed practitioner. So, I went home and I started to look into things like ‘’What's essential tremor’’. I joined some groups on Facebook, for support and things like that. And then I started to notice, I'm a little bit of a further progression of my symptoms. They didn't match the symptom profile for essential tremors. I had a resting tremor. I try to draw symbols, like a swirl, a spiral because when people draw that they get that shaky spiral thing I could draw that, no problem. And then I started to have issues with walking and dressing myself. I was having multiple naps every day trying to get through my day. I couldn't put it in a ponytail. I couldn't type anymore. All these things were happening. And I'm like, this is not essential tremor. So about a year and a half after my initial diagnosis, I went back to my doctor and he said, okay, I'm gonna send you to a different neurologist in another city.

I got in right away which was kind of a little bit scary because I knew at that point. Because in Canada if you get in to see a doctor right away, it's like there's a problem. Or, if they call you right back, there's an issue. So, I went to this doctor in Victoria British Columbia, and he said to me, ‘’You know what this is, right?’’. I said ‘’I don’t want to presume anything but I think it’s Parkinson’s.’’. We both have Parkinson's at the same time and I started to cry and my ex-husband passed out. He fell on the floor and passed out. So, I had to drive us home, me and my ex-husband from Victoria, which is a several-hour drive back to where I live. But when we got home I said, I need to be alone for a few minutes. At that point, I made a promise to myself that I wasn't gonna waste one second of my life feeling sorry for myself. I was gonna do everything that the doctor had just told me in that room that I needed to do in order to not become a burden to my family. So, he was like, ‘’You need to exercise harder than you'd like to and more often than you think you can’’. And so I started to run and I was cycling already, but then I fell off my bike because my balance kind of had gone, right, at that point. So I just started to run and I was running all kinds of races and stuff like that. And then I noticed my fatigue was getting worse and worse and worse. My friend who got me to do the thread To Conquer Cancer said ‘’Hey, you should do this thing, it's an online fitness program for women. It's called Healthy Role Models’’. It's based out here, where I am, in British Columbia. And so I did that, a couple of times. They only do it twice a year and in the off-season, going to the gym. And I was doing more bodybuilding workouts and I'm like, I feel way better after doing all this right. I felt way better after going to the gym and lifting heavier things. So, I just started to do that.

Eventually, in 2018, I had to quit my job because we sold our business. We had sold our company. We made pretty good money on that. My position after about a year, because when you sell a business usually there's a transition time or the owners will come in and help and transition from the way we did things through the new owners are doing things and so my position was kind of eventually eliminated after about a year. So, I became a personal trainer because I was at the gym every day. My trainer said, you should become a trainer, so I did. That's what I've been doing since about 2020. 

Initially, before I started medication, fatigue and things like that were a big issue for me. I don't really have that anymore now. I think it's a large part because I don't do a lot of cardio. I do a lot of lifting weights. I don't know what happened. But I did the keto diet for a couple of years. I didn't lose any weight on that but I did lose weight afterward from weightlifting, but I felt way better after doing that as well. So, two things that I did that may or may not have helped, but I know the weights helped, but I don't know about the keto diet. I don't do that anymore. So, the challenges after being diagnosed were just I didn't know what to do with myself. So, I started a podcast. I had a little podcast called Parkinson's Road Podcast. There are still episodes out there and I have thought of going back but I haven't. So, for me it was the, question number three goes to the most unexpected aspects of Parkinson's disease, my husband left me. He had an affair because he wasn’t in the center of attention anymore and I was. Because I was beginning, more notoriety in our community. We had organized a super walk a couple of times here. I was talking to more people. Going to the gym gave me a lot more confidence in myself. I lost a lot of weight and so he had an affair with someone. We got a divorce, officially last year. But I didn't expect that because I was like, not my husband. I did everything I possibly could to not become a burden to him and my kids and it didn't work for me. I think having Parkinson’s actually kind of prepared me for that a little bit because I got used to fighting all the time. Fighting your own body, just having to work hard and it made me a lot stronger, mentally and emotionally stronger as a person. So, that was a little bit unexpected for me. I think that happens to a lot of people with chronic illnesses. A lot of people's partners go and say ‘’I didn't sign up for this one’’. Well, if you're married, you actually kind of did. You said it in your vowels most likely. But there's nothing you can do about that. I'm with a really wonderful person now. He’s great, he's a man and he's supported me. I just had DBS in December and he was there to support me through all of that.

Could you please describe your relationship with DBS so far?

It's amazing. It's really good. I think though personally and this is just me. I worked so hard to be in really good shape. I've maintained a really positive mindset. I do a lot of things internally to make sure that I'm just not depressed. I think I might have a little bit of apathy that might be, kind of poking around the edges, but I do a lot of stuff to try to battle that. My results have been, according to the nurse, she said ‘’You have way better than average results in the British Community’’. Because a lot of their patients are older males. The nurse in the hospital where I had the surgery, he said ‘’I'm the first female DBS patient he's ever had’’. He was a registered nurse and he was also fairly young. But he's looking at Vancouver General Hospital which is where all of the DBS patients in this province would go. Yeah, so that was kind of interesting. But yeah, just the nurse said, I talked to her at my last programming appointment which was a week ago from today and she said, ‘’It's because you're in good shape and you've looked after yourself as well as you're very young, you respond really well to the medications’’. When I'm on, I'm just like this, you wouldn't know. My MDS said I'm the only person he's ever given a zero on the UPDRS score ever in his whole career. I was like ‘’Thanks!’.

As a nurse, how much did you know about Parkinson's disease when you were diagnosed?

I regret every dose of medication I was ever late in giving anyone with Parkinson's disease. Because I know how badly that messed me up now. I mean I get it, I was a nurse. You stretch really thin, right? I mean you don't always have time to get to everybody on time, but you do your best. But man, if I could go back I would do something like here. I would try to give them, let them have their own control or something, or advocate more for them. I do that a lot now for people with Parkinson's. But yeah, I feel so bad. Where it has helped me is an understanding of pharmacology and symptom management, things like that. I'm not afraid to kind of step up a little bit and say ‘’Hey, I don't like this medication. I don't like this or I want you to do this from you. Can we try this?’’ My doctor, my GP, he said ‘’I've never seen anybody micromanage a disease like you before’’. He said ‘’But I would do exactly the same thing as you’’.

What tips, tricks, or routines do you use to manage Parkinson's symptoms effectively?

My secret sauce is medication and exercise and mental health. I'm a counselor. I just took a diploma and applied psychology and counseling and I'm thinking about going back to school and to get my designation, a registered psychiatric nurse. But, it was really for me, it was giving back. I read this article a very long time ago about being your own role model. And so I became my own role model. I'm like, I gotta look at myself in the mirror who could be a better role model to me than me, you know. So, I started to just be really diligent about exercise which is easy when you work in a gym, I guess. It's not necessarily easy when you go to work and you can't move or whatever. I can't say my diet was the best, it's cleaned up a lot. I'm gonna compete in October for a bodybuilding competition this year. So, I’ve got a goal to work towards. I've always got a goal of something, always something I'm working towards. I finished school last year. I'm looking for a new job, which I've got hired in a different job and in an industry that's more aligned with what I want to do for my job, like my career. The key for me though is exercise and positive mindset. You have to surround yourself, but you'll have to do it has to come from within you have to choose it. You have to choose to be a positive person. I can't think of a better way. Always look for the good. Don't ignore the bad, but you always have to look for good or be appreciative of something. I don't know. I think it's been and then giving back. I facilitate the local Parkinson's support group for Parkinson's Society, British Columbia. We've got about 60 people now, I think in our group that have shown up. When I first started facilitating we had maybe 15 or 20, so I think word is getting out. Self-care for me is, trying to get a good night's sleep, which I don’t do very often. I don't drink alcohol anymore. Because I'm gonna be in front of a lot of people and not very much in clothing pretty soon. And so that's important. It's about. I don't necessarily listen to what everybody else is saying about exercise. I do what works for me and what works for me isn't cardio. It's not running and all that. It's lifting heavy weights. More volume and obviously some intensity. I have to add cardio because I think it's important still. But what's really worked for me is that combination of mindset, mental health, physical health, and medication. It really irks me when people say I don't take medication. Why not? For whatever reason. I think they look a little bit silly. It'll be really easy for you to go to your doctor and say, it'll be relatively easy for them to say, ‘’I need this’’. There's that sort of pervasive attitude for whatever reason, it's still out there. ‘’If you don't take it now, you'll get better results later’’, that's been completely disproven. You're never gonna be this young again. You're never gonna be this vibrant again. Your disease is gonna be here. It's always gonna progress. It bothers me that people are kind of suffering because they're scared of medication or whatever. You gotta be open to the process, right?

I am fortunate that I have an MDS who lives in the same town that I do. I only see him every six months up until he moved here. I was only seeing an MDS once a year. I'd have to go over to Vancouver. I was also a volunteer patient for a geriatrician. He put on a seminar and my MDS was there. They did a seminar, like a continuing education credit session for doctors here in British Columbia. It was about ‘’Is it Parkinson's or Parkinsonism and how to differentiate’’. They had me come in to be like a patient. He's like, ‘’I have 15 minutes to assess these people and let them know they have something potentially a chronic disease for the rest of their life. I got to get through this really fast’’. He made me do a couple of things and I felt he should spend more time. But, he really doesn't have the time because he's got to see 20-30 patients in a day potentially, I guess, right? So, our healthcare system is a big issue here as well for people managing their disease. Anything that we could have outside of that, that would help produce some sort of information that they could maybe not have to tell their doctor but the doctor could look at data, a watch or something that can collect. I mean try to explain to someone the difference between, you can have dyskinesia from the medication, you can have dyskinesia as it’s wearing off. As soon as I start saying that, you can see their eyes kind of glaze over. So I can't imagine some doctor starts talking to someone who's just been told that they have Parkinson's disease. You're in shock and then they start sputtering all the stuff then you're like, it doesn't go in, right? Even your caregiver who's most often your spouse is like… Well, mine passed out. So, we spent the next 10 minutes to revive him.

What advice do you have for someone recently diagnosed with Parkinson's?

I think that the advice I would give, kind of the top five things or whatever. I would say to people who are diagnosed is you really need to exercise and you really need to take that very very serious. That should become the top priority in your life before anything. You should be exercising and looking after yourself because you cannot pour from an empty cup. You cannot put a mask on you can't help other people if you can't help yourself. If you can't look after yourself, it's gonna give you I mean, being physically fit does a lot for more for you than anything else. Then, right beside that is your medications because you cannot exercise appropriately if you can't move, right? You still need to have medication. You can push through and it will get better. But you need to have something that will help you get to a state where you can move with, some safety and things like that. And then, you need to look after your mental health. You need to go see a counselor, spend the money on that if you can. Here in British Columbia, I know that our Parkinson's Society offers council. They have someone in their offices that you can call over. I am a volunteer counselor at the Nanaimo Family Life Association. So I know for a fact that we have low-cost counseling. It's free or you can pay whatever you can pay. It's on a sliding scale. So, there's got to be some kind of community resources in most communities for people. You look after mental health if you need to. Get some support. It was really hard for me to have to ask for help. I'm a very very independent person and asking for help was very hard. Publicly using a walking sticker, that was really hard for me. When I had amantadine, I had to use one of those little motorized carts in the store. I really actually like that because people just get out of your way but I don't look like I belong in that. It was really hard for me to accept that kind of help. People had helped me unload my groceries out of my cart and stuff like that. I didn't like that. So, you have to be a little bit more vulnerable. You also need to start making yourself aware of it. Start reading or talking to other people with Parkinson's. Go to a support group, do research whatever. You need to kind of put on your thinking like a research path. All of this garbage on the internet about you can do this, you can take this, this will cure you. The first thing I said at one of the support groups that I let is, there's no such thing as a cure for cancer. There's no such thing as a cure for Parkinson's. If someone tells you they have a cure you need to run away from that person right now because they're lying to you. They're trying to sell you something. This isn't even a cure, this DBS. It's only symptom management. The quicker you kind of acknowledge and understand that, the better you'll do, right?

Is your podcast, ‘’Parkinson’s Road Podcast’’, still active?

There are episodes. Yeah, it's called the Parkinson's Road Podcast and you can find it pretty much anywhere. I think I'm on all of the platforms. I didn't put myself there, I don't know. I think there's 15 or 16 episodes. I stopped doing it once I found out my husband had had an affair. Then, when I came back, sort of wanting to do it again. I just wanted to be myself. So, I stopped doing it for a while. I’ve thought about going back. Now, I actually might be able to do that because I actually have the time and energy to be able to do it. Before, I was limited because my hands wouldn't work or I couldn't type anything.  One more thing, I got a tattoo after. This is kind of how, this is the motto I live my life by. Here, it says ‘’Happiness can be found, even in the darkest of times if one only remembers to turn on the light’’. That's from Harry Potter. You just have to like, you have to find, doesn't matter where you're at in life, there's always something to be thankful for, there's always something to be grateful for, there's always something you can do to help other people. Sometimes I'm like, maybe you are the light for other people, right?