Diagnosed with Parkinson's? You're not alone. In this episode of Live Parkinson's Live an Exceptional Life, hear a powerful story of resilience and living a fulfilling life after a Parkinson's diagnosis. Join us as we explore:
Coping with the initial shock and navigating the unknown.
Finding the fight within and implementing strategies to manage symptoms.
Redefining life after Parkinson's and discovering new sources of joy.
Actionable tips and resources for living well with Parkinson's.
This episode is packed with inspiration and practical advice to empower you to thrive despite a Parkinson's diagnosis.
Listen and learn how to:
Maintain a positive outlook in the face of challenges.
Find strength and resilience to live a fulfilling life.
Access valuable resources to support your Parkinson's journey.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Diagnosed with Parkinson's? You're not alone. In this episode of Live Parkinson's Live an Exceptional Life, hear a powerful story of resilience and living a fulfilling life after a Parkinson's diagnosis. Join us as we explore:
Coping with the initial shock and navigating the unknown.
Finding the fight within and implementing strategies to manage symptoms.
Redefining life after Parkinson's and discovering new sources of joy.
Actionable tips and resources for living well with Parkinson's.
This episode is packed with inspiration and practical advice to empower you to thrive despite a Parkinson's diagnosis.
Listen and learn how to:
Maintain a positive outlook in the face of challenges.
Find strength and resilience to live a fulfilling life.
Access valuable resources to support your Parkinson's journey.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
Hello and welcome to Live Parkinson's Live an Exceptional Life. I'm your host, chris Kustenbader, and I've been living an exceptional life with Parkinson's for the past 14 years. The mission of this podcast is to help as many people as possible live a great quality of life after a Parkinson's diagnosis. Today's topic is Parkinson's Doesn't Define Me. My Story of Resilience and Living a Fulfilling Life, from playing my favorite songs on the guitar to catching and releasing the trout that took the dry fly that I tied, or sitting around the campfire with friends and family, Parkinson's isn't stopping me from living my life on my terms. So are you ready to rewrite your Parkinson's story? Then join me as I share my journey to a fulfilling life. Before we get into this episode, I wanted to take a minute to thank all of you for listening to this podcast. This podcast just had over a thousand downloads, and I owe a debt of deep gratitude to each and every one of you. My mission is to help as many people living with Parkinson's lead a great quality of life. Never in my wildest dreams did I think I would be able to reach this many people. So, from the bottom of my heart, thank you for listening and I hope this podcast has been a benefit to each and every one of you. Now you may be wondering why I've made it my mission to help other people with Parkinson's live a great quality of life, and that's a fair question. So let me share why this is so important to me.
Speaker 1:
It all started, believe it or not, when I was about eight years old, in the late 1960s, early 1970s. My grandfather was a family doctor in rural central Pennsylvania and my grandmother who was blind from the time I could remember was his nurse. Everyone around town called him Doc. In addition to having office hours, there are many of his patients who were unable to travel to his office, either because of lack of transportation or they just couldn't afford the expensive travel. So Doc made house calls and he always let me tag along on the house calls, and people were always happy to see his little helper. My grandfather intently listened to his patients' problems and he treated their issue. He also knew that many of these people were going to be unable to afford to pay him for his service, but that really wasn't what was most important to him. Making sure his patients were healthy and able to live their life and take care of their family was his main goal. He treated everyone with kindness and respect. Many of the people baked him a pie as a way of saying thank you for helping them. Now I was fortunate to be able to make house calls with him for about three or four years before he retired to help my grandmother.
Speaker 1:
Now I mentioned she was blind and that was due to complications from diabetes, and she was blind from pretty much from as long as I can remember. However, that didn't stop her from doing anything she wanted to do. One of the things that always really impressed me was when she was cooking. I would watch her stand at the stove and put her hand into the pan and feel how things were cooking and when she thought things were done. She also loved gardening and it was always a treat to watch her and my mom and my aunt can fruits and vegetables that were in season. They always enjoyed doing that and always would laugh and have a good time together. One of the things that I always remember that she told me was Chris, you know, don't worry about things, because most of the time, things we worry about never come true, or if they do, they're never as bad as we thought they would be.
Speaker 1:
Well, both of these outstanding people taught me from a young age was to help others so that they can live a great quality of life and be able to help and support their families. The other things I learned growing up was to genuinely listen to people and their story because everyone has a story and to treat everyone with respect. It was at an early age that I made it my mission to help people where and when I could, and expect nothing in return. To help others, be their best so that they can pay it forward and help someone else, and this is why I started this podcast and wrote my book, hoping I could help as many people and their families as possible to live a great quality of life and that they could pay it forward and help other people and just get the ball rolling and create this great community of people being able to help each other out.
Speaker 1:
So let me switch gears now and I'll give you an overview of what we're going to be discussing in this episode. I'll start with discussing my diagnosis story and how I came to terms with my diagnosis, and then how I had changed my mindset to face the challenges that Parkinson's was going to present. Then I'll talk about some of the challenges that I faced with Parkinson's and how I adapted to manage those challenges. I'll talk about how you can leverage your personal strength to overcome the challenges that Parkinson's may present to you. And then I'll talk about hobbies and interests and how they can play a key role in helping you live a great quality of life after your Parkinson's diagnosis. And then I'll provide some tips and tools that have helped me live a fulfilling life after my Parkinson's diagnosis, including exercise, nutrition, optimism and positivity and social interaction. And then I'm going to challenge you with some questions that you can use to plan how you're going to live a purposeful life with Parkinson's and how you're going to stay engaged with your family and friends. You see, the purpose of me sharing my story and asking questions along the way is to challenge you to live your best life. This episode is all about showing you that you can live a life you want after a Parkinson's diagnosis. Now let me begin with my diagnosis story, in the hope that it can give you some insight into my approach to facing the diagnosis and how it helped me chart the course of how I was going to confront Parkinson's.
Speaker 1:
It all started in the summer of 2010, when I was on vacation in Deep Creek, maryland, and my wife and I went for a walk and we came back and she decided that she was going to go to the store and I stayed home with my son. That she was going to go to the store and I stayed home with my son and daughter, who were both teenagers at the time, and all of a sudden my left hand started to shake. So they immediately panicked and called my wife and said dad's hands shaking and it won't stop. And so my wife came home and she said we're going to the emergency room. And of course I said I'm not going to the emergency room. Yes, you are. And I said no, I'm not. She said, yes, you are. And so we were in the emergency room and the doctor that examined me said that it was probably stress related. And I'm thinking to myself stress related, I'm on vacation. But as I thought, well, maybe the doctor knows best.
Speaker 1:
So went back and finished vacation, even though my hand was shaking, and when I returned home I made an appointment with the neurologist, who I'll call Dr R. He was a really great neurologist and he was thorough and tried to rule out things before just making a diagnosis. And so the first thing he started with he said well, I told him what the doctor on vacation said and he said well, sometimes stress can manifest itself in a lot of different ways. So I went ahead and he said let's try an anti-anxiety, anti-depressant for a month and a half, because they do take several weeks to build up in the body, and to see if that can solve the problem. Well, during that time period I started dragging my left leg when my wife and I would take the dogs for a walk in the evening, and so I called the doctor and he said well, come on back in. And he ran a number of other tests, a nerve conduction test and some other things, just to rule out everything that he could think of. And then he said well, let's try you on a Parkinson's medication because you may have Parkinson's disease.
Speaker 1:
And so he started me on a Parkinson's medication and then about a day and a half later, the tremor, you know, pretty much subsided and would only return when I felt like the medication was wearing off. Now he said, as a general neurologist, he suggested I go see a movement disorder specialist. And he graduated from the University of Maryland Medical School and said that the University of Maryland had a very good Parkinson's program and suggested that I go down there to be evaluated. Parkinson's program and suggested that I go down there to be evaluated. So he referred me to the University of Maryland and my wife and I took the hour drive down from where we live and I saw Dr A, the movement disorder specialist, and she was exceptional too. She ran a number of different tests on me. While in the office she conducted some physical examination and she said, based on a review of your records and the findings that I've seen today, that it looks like you have Parkinson's disease.
Speaker 1:
So it was at that point I'm thinking to myself great, I'm 46 years old, what am I going to do now? How am I going to work? How am I going to help support my family? But I didn't want to give it away. So I looked at my wife with a, you know, kind of like a smile. Well, at least I know what is wrong with me now on the way. So I don't know necessarily that I was angry or in denial. It was more of. In one sense, it was a relief that I knew what was wrong with me, but then it was more thinking about the future of where am I going to go from here.
Speaker 1:
And it was at that point, when my wife and I were driving home from the doctor's office, that I had a chance to really think about what just transpired in the doctor's office, and it was at that point I thought to myself, besides a sense of loss, I have two choices, and the first choice was I was at a crossroads, and the first choice was I could look down the dark path and I could just go home and I could feel sorry for myself, drop out a lot of the activities that I enjoy doing and participate in anything and pretty much socially isolate myself and just let Parkinson's take control of my life. Or I could go the other route, and that was to face the Parkinson's challenge head on and do everything in my power that I could to beat back Parkinson's and live the life that I wanted to live. So growing up I had a chip on my shoulder and when somebody told me that I couldn't do something, I always set out to prove them wrong. So in this case, parkinson's was no different. You know people said well, you know, there's a lot of times when you have a Parkinson's diagnosis you're going to have to limit what you're able to do, and I thought to myself I don't think so I'm going to live my life on my terms. And so I went home and I spent the next two months researching everything I could about Parkinson's.
Speaker 1:
I went to all the big websites at Michael J Fox, davis Phinney Foundation, the Parkinson's Foundation, brian Grant Foundation. I read clinical studies and anything I could get my hands on. I watched webinars. I attended a Parkinson's symposium.
Speaker 1:
In addition, at the same time, one of the things that I've always been fascinated with is studying people that do great things, and how were they able to do what they do? What did they do to get to where they are? And so I noticed there was a number of people with Parkinson's that were doing exceptional things. So I studied what they were doing because I thought if I could copy what they're doing, that's going to help me in the long run as well, because if they have a process that they can use to do exceptional things, then why shouldn't I be able to use the same process? So I took what I learned from those two months of research and studying these people doing exceptional things running marathons, cycling, climbing mountains and I spent the next month, distilling it down and trying to find commonalities between what people were doing and what the research said. And so from that I was able to distill it down into four buckets or four strategies, and that was exercise, nutrition, positivity and optimism and social interaction and community. And so I decided that I was going to use those four areas as the focal point for how I was going to move forward with my life with Parkinson's and live the best life that I could and have the greatest quality of life that I could.
Speaker 1:
And so I started with exercise because and you probably hear, you've probably heard me say it many times if you've listened to some of my previous podcasts exercise, exercise, exercise. Because studies have shown that exercise can help slow progression but also helps you with your balance, your strength, your flexibility. Now you're thinking to yourself I hate exercise. Well, it doesn't mean you have to exercise. It doesn't mean you have to go out and start running marathons or cycling 100 miles a day. But I committed to myself that I was going to exercise seven days a week. And you may be thinking seven days a week, chris, are you crazy? But seven days a week, some of those days I'm going to do moderate walking just to make sure that I get some type of physical activity in. So it's not necessarily seven days going to the gym and killing myself, but it's also picking things that I enjoy doing. So I decided I was going to take a cycling class, I was going to swim and do water fitness classes, I was going to do yoga and bar classes to help with stretching and flexibility. And then I also participated in the Momentum Program, which is a program for people living with Parkinson's and other neurological disorders at the York PAJCC, and we did a whole separate podcast on that. But it's just a great program where we incorporate exercise, cognitive exercises, balance, strength training.
Speaker 1:
The second piece was nutrition. I was going to focus on trying to eat better, and that included trying to limit processed foods and sugars. And then optimism, which was a little bit easier for me because I've always been a pretty positive person, and I was going to focus on trying to include laughing every day and writing in my gratitude journal. So I start out each day with three things that I'm grateful for and that sets the tone for having a positive day. And then, finally, social interaction. I was going to make sure that I continued to maintain all the activities that I was currently participating in, whether that was family or social activities, and then I was also going to try to learn some new things and meet people through other social networks. So those were the four strategies, or buckets, that I used to help me focus on leading a great quality of life.
Speaker 1:
That all sounds well and good, chris, but let's take a look at how well did you do. It's been 14 years now and you've implemented these strategies, but how have they really helped you? Well, I can say that I've lived an exceptional life with Parkinson's and been able to maintain my social activities, maintain a positive attitude and exercise every day. Now, of the four strategies, you can probably guess which one I probably have the most trouble with, and if you said nutrition, then you nailed it. So let me be completely honest.
Speaker 1:
Nutrition's always been a struggle for me, because I like to eat and I do well for a couple days, and then, if I go to a social gathering where there's food or I'm with friends and there's a lot of food there, then the wheels come off. So I really need to focus on portion control and choosing the healthy options, and so what I really have to understand is I love ice cream. I mean not just like ice cream, I love, love ice cream. And so I need to cut back and say I can't eat three or four scoops. I can eat one scoop and then, without you know, the whipped cream and everything else on top of it. Well, these strategies have helped me live the life I want to live in my eyes, an exceptional life.
Speaker 1:
That doesn't mean that my journey has been perfect. You may be thinking wait a minute, chris. I understand that you have these four strategies you use to quote, lead an exceptional life, but really, parkinson's and exceptional life don't seem to go hand in hand. You're absolutely right, they don't seem to go be used in conjunction with each other. You don't hear too many people saying oh, you have Parkinson's, I bet you're living an exceptional life. That's typically not something that you hear, but when I'm talking about living an exceptional life, to me exceptional is a subjective term, because what I believe is exceptional, someone else may not, and that's the beauty of it. Not only have I been able to continue doing what I want to do and using the strategies, but being diagnosed with Parkinson's and participating in new social groups, clinical studies and being able to attend Parkinson's events has enabled me to meet new people and make new friends. It's helped me build new social relationships. Now I do want to point out, though, that the addition of the four strategies exercise, nutrition, positivity and social interaction as guides. I've been able to live an exceptional life with Parkinson's because of the great care I receive at the University of Maryland Neurology Clinic. My doctor and care team are exceptional, so the strategies and care go hand in hand. So it's up to you really to decide what's exceptional in your eyes. What does exceptional mean to you? And that's really what this is all about is helping you get to the point where you live the exceptional life in your eyes.
Speaker 1:
Now, I don't want to paint a rosy picture and say that my journey has been filled with endless days of sunshine, with beautiful flowers, butterflies and lollipops, because I'd be lying, be lying, yep. There are many days when I have trouble doing simple tasks because of my tremors, and or my walking or balance isn't good and people look at me like I'm intoxicated. Then there's my friend's sleep, who decides to leave me every morning about 3 am, and then there are the embarrassing moments when a friend or family member is talking to me and all of a sudden I begin to lose focus and I notice that I'm struggling to keep my eyes open, and then I have to apologize for nodding off in front of them. But I've always been a positive person and while Parkinson's is always there tapping me on the shoulder and laying down challenges, I choose to live my life on my own terms, and that's why I believe it's exceptional and hope you decide yours is going to be exceptional too. So how has a Parkinson's diagnosis changed my life? Well, for one, I think it's shown me to slow down and really appreciate what's important in life friends, family and the personal connections I make with other people. I do a lot better job of really listening to people and I'm so much more empathetic with their problems. Now, I've always wanted to help others, but Parkinson's has taught me that every life has a story, and I really love to hear people's stories where they came from, what their hopes and dreams are. I'm fascinated with people's life experiences. I've realized when you understand their story, you can share yours with them. It helps them see that there is hope. When they're facing challenges and everything seems dark and they don't feel like they're going to be able to go on, I can help them develop strategies to overcome the challenges. Another area where Parkinson's has changed me is I don't put all things to the future like I used to and say well, I'll do that someday when I have more time. Now I make the time to do it and let me give you a couple of examples.
Speaker 1:
I've always loved listening to music. Growing up, I loved rock music. Growing up in the 70s and 80s I listened to and I loved listening to Van Halen, acdc, metallica and then, when it got into the 80s, the hair bands Bon Jovi, poison and others. And then now, as I've gotten older, I still love listening to these bands, but I've added a lot to the musical genres that I listen to. Today. I really enjoy listening to country music like Luke Bryan, jason Aldean, zach Brown, cole Swindell and others. Christian music I like listening to Skillet, ann Wilson, and I also enjoy classical music. So I've got a pretty wide genre or net in terms of what I like to listen to in terms of music. But one of the things that's always tied all these together for me, especially when I was younger, was watching the lead guitarist Whether I saw something on TV or whether I actually went to a concert and saw someone playing live, I was just fascinated by the guitarist and I told myself I really want to learn how to play guitar.
Speaker 1:
But I did what I typically do and I said, oh, I'll do that someday. So as I got older and as you know, life gets in the way, so to speak I always put it off, saying I'd like to begin learning guitar, but I'll do it someday. Well, after my Parkinson's diagnosis, I decided no more some days. So, at the age of 54, I decided to learn to play guitar. My wife got me a gift certificate for my birthday at the local guitar shop and I went down and met the owner, bob, and I said Bob, I want to learn how to play guitar. And he helped me pick a beginner guitar with the gift certificate. And then he suggested that I take weekly lessons so that I could learn a lot faster. And that's what I did. I took lessons for about two or three years from Randy, and he was an exceptional teacher because he had a lot of musical background. But then, when COVID hit, he wasn't seeing any more students. So he said you know, you've learned enough that you can go and do it on your own. And that's what I did. So I went home and I practiced and pretty soon, six years later, I'm able to play most of the songs that I liked listening to when I was growing up, so it's been a great experience. So I was glad that I didn't put off learning to play the guitar until someday and then never get around to doing it.
Speaker 1:
The second example is I love to fly fish. My dad taught me to fly fish when I was 12 years old and also to tie flies, and he would always take us along on his fly fishing trips with Uncle Charlie and some of the friends, and he made sure that we knew what we were doing and helped us along the way, as well as Uncle Charlie and the other people. One of the things I found with fly fishing is people are always willing to help each other out. So at that point I fell in love with fly fishing and then my brother, bud, who's three years younger than me, also learned to fly fish and we've been fly fishing together for the past 48 years. And one of the places that I've always dreamed of. And one of the places that I've always dreamed of and it's been number one on my bucket list, based on stories I've heard for the last 40 years is oh, you got to go fish. The famous rivers of Montana the wild brown trout and rainbow trout and cutthroats are just exceptional, and so that was always at the top of my bucket list. And again, as life would have it, I always said, oh, I'll do that someday.
Speaker 1:
Well, in the fall of 2022, I said to my brother, I'm going to go to Montana to go fish, to go fly fishing, do you want to go? And he said, absolutely, booked airline tickets and reservations, staying in a small motel or cabin, and we flew out to Bozeman, montana, and we fished the Gallatin, the Missouri, the Madison and the Armstrong River. So I got to fish for rivers out there and caught some of the caught and released, because I do catch and release, caught some of the caught and released because I do catch and release, caught some of the biggest wild brown and rainbow trout I've ever caught in my life. But it was more than just the fishing too. It was just the beauty of the, the state of Montana, that the scenery was exceptional and you know, it's like things that you see in a picture. So I was able to cross that off my bucket list because I told myself I'm not going to put things off anymore. So one of the suggestions I would have is that you, if you want to do something, do it and don't put it off until someday. This was one of those trips that your dreams actually became your reality. So the moral of the story is don't let Parkinson's hold you back. Do the things you've always dreamed of doing, and you may find out that your dreams will become reality.
Speaker 1:
Finally, I've got more of a passion for learning after my Parkinson's diagnosis. I'm always trying to learn new things and apply it to something I've always wanted to do. I learned to build a website and now I have two ongoing websites where I write blogs and articles, and one, of course, is the liveparkinsonscom and the other is discoverboxerdogscom. My wife Mary and I have been rescuing boxers through Adopt-a-Boxer Rescue for the past 20 years and we've had five different boxers and right now we currently have two Duke, who's 11 1⁄2, and Katie, who's 8 1⁄2. And they're just wonderful souls. From that, I've also learned how to podcast and do some things on YouTube. I just love learning new things. I also love to grow a garden and I'm always trying to learn new things in relation to gardening.
Speaker 1:
So my message to you is don't let Parkinson's be the focal point of your life. It's something you have and something you live with, but it's not who you are. I've talked a lot about living life on my terms, but I'm also a realist. I understand that as Parkinson's continues to progress, the challenges are going to be bigger and require more effort to deal with. Now, after living with Parkinson's for 14 years, I can honestly say where I've had physical and cognitive changes. Each week and each year has brought new challenges and things are getting harder to do. Speaking each year has brought new challenges and things are getting harder to do, but by approaching my life with optimism and gratitude, I've been able to live an exceptional life on my terms.
Speaker 1:
If anyone asks me for advice on living with Parkinson's, here's the advice I would offer. First, find a movement disorder specialist who you have a good relationship with. They're especially trained in dealing with Parkinson's. Second, exercise, exercise, exercise. Studies have shown the effectiveness of exercise on your quality of life. So pick things you enjoy, whether it be walking, swimming, cycling and just do it, and do it consistently. Third, be positive. It's going to make your journey so much easier, and one of the things I mentioned earlier is writing down three things you're grateful for every day, but always try to laugh and look at the positive in life and you'll feel so much better and it'll make your journey so much easier. And then, finally, stay socially engaged with friends, family and activities. They give you something to look forward to and they're going to help you prevent social isolation. And then, finally, and most importantly, thank your caregiver or your care partner. They're intertwined in your journey. Make sure they have time to relax and enjoy their lives as well. Don't let Parkinson's define who you are or what you want to do. Appreciate everything you have and go after the things that you want to do, and don't put it off till tomorrow. You'll feel good about the things you can accomplish and Parkinson's is just part of your story, but make it a great story with a happy ending.
Speaker 1:
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Speaker 1:
Slash exceptional life. That's wwwaudibletrialcom slash exceptional life, and I'll include a link in the podcast description. Now, for complete transparency and honesty, if you sign up for the free 30 day trial of audiblecom, audible pays me a small commission, which I use to support this podcast. So if you decide to sign up for the free 30-day trial, I thank you for supporting this podcast.
Speaker 1:
Before we close out the episode, I wanted to ask a few questions to challenge you as you move on with your Parkinson's journey. What are some of the strategies that you will use to face the challenges that Parkinson's throws at you? How will you define exceptional and live your best life with Parkinson's? What social groups will you join or what hobbies will you do to stay actively engaged? And finally, how will you share your success stories to help other people? And that, my friends, is my story of resilience and living a fulfilling life with Parkinson's. Now, remember, this disease may throw some curveballs, but it doesn't define who you are. You have the power to fight back, redefine your life and find joy on your own terms. If you're facing Parkinson's and need a listening ear or some inspiration, reach out to me by clicking the send text message link in the podcast description, or message me on Facebook, instagram or X. Let's connect and share our journeys.
Speaker 1:
Now also, parkinson's doesn't have to be a solo battle. There's a whole community out there ready to support you, so join one of the conversations online and share your story, ask some questions and find encouragement from others who understand. I've also put together some resources that have been incredibly helpful for me, and I'll leave a link in the description for the free resource guide and you get a copy. You can get a copy of it from my website, liveparkinsonscom. These resources cover everything from exercise routines to support groups, and they can be a great starting point for your own journey. Now remember you're strong, capable and worthy of living a full and happy life. Go out there and show the world what you're made of, stay strong and keep fighting.
Speaker 1:
Before I close, I want to thank you for listening and I'd ask that you visit liveparkinsonscom. There's a number of free resources on there that are available for you, including a free monthly newsletter. There's a free Parkinson's medication and symptom tracker that you can use to prepare for your next doctor visit. And again, there's the free Parkinson's resource guide that include links to all of the national Parkinson's websites, local and regional the national Parkinson's websites, local and regional and all you have to do it's a one source document that you can use to click and go find the information that you need to make your life exceptional. So again, I want to thank you for listening to this podcast and being part of this group of great individuals, and it makes my heart feel great that other people are out there wanting to share and learn from each other. So thanks again. Have a spectacular day and remember, make your life spectacular. I will see you on the next episode. Thank you.