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[Music]

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Hello, welcome to Live Parkinson's, a show dedicated to helping people with

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living with Parkinson's live an exceptional life.

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I'm your host, Chris Kustanbauter, and I've been living an exceptional life with Parkinson's

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for the past 13 years. This podcast is focused on the four strategies that I've been using to lead

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an exceptional life with Parkinson's. These strategies were developed through extensive research

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in studying people with Parkinson's who are accomplishing great things. This podcast is designed

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for people living with Parkinson's, their family and friends, caregivers, and anybody else who can

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help you live in a great quality of life after your Parkinson's diagnosis. In this episode,

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I will unveil my four strategies for living an exceptional life with Parkinson's.

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I will go into great detail and subsequent podcasts on each strategy, so I hope you will join me

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in future episodes. Now, before we dive in, I have a brief disclaimer that this podcast is for

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educational purposes and is not designed to diagnose or treat Parkinson's. Please ensure you're

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following the specific treatment plan that your physician designed with you based on your specific

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health needs. Information being shared is based on my own personal experiences living with Parkinson's.

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So, let's dive in. Were you a family member overwhelmed and confused about the diagnosis you

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received and didn't know where to turn or what to do? I know exactly how you feel. That's why I wanted

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to start this podcast. I wanted to help others by sharing what I've learned over these past 13 years,

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based on the best research and the latest research to help me maintain and lead a great quality of

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life. So, let me start by briefly sharing my journey with Parkinson's because I think it'll give

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you some good perspective on how I developed the four strategies that we're going to be talking about

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in just a few moments. So, if you'll indulge me for a few minutes, then I'll unveil my four strategies

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in the hopes that they that they can help you and your family on your Parkinson's journey.

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Every life has a story and this is my story. My Parkinson's journey began in 2011.

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When I was just 47 years old, I began noticing I had a tremor in my left hand

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and it wouldn't go away. And then as I was taking walks with my wife, I noticed I was dragging my

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left leg. So, I made an appointment with a primary care physician. He conducted some tests and

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then referred me to a neurologist. The neurologist tried a number of different tests to try to figure out

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what was going on and then eventually referred me to the University of Maryland Neurology Clinic.

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It was there that I received my diagnosis of Parkinson's disease.

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After I left the clinic and on my hour ride home, I began staring out the window,

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you know, thinking about the diagnosis I had just received. And I realized I was at a crossroads

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in my life. I had two choices. I could choose the dark road on the right and decide I'm just going to

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go home, drop out of a lot of the activities that I enjoyed, drop out of a lot of the social activities

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that I participated in and just, you know, become homebound. Or I could choose the path on the left,

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the bright side, that side of the road enabled me to take control of Parkinson's because what I

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decided at that particular moment was that I own my life, not Parkinson's. Parkinson's was just

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along for the journey. So, it was at that point that I decided to take control of my life,

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begin to develop the four strategies that I'm going to be talking about in a moment.

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So, after making the decision that I was going to control Parkinson's and not let it control me,

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I spent the next two months doing extensive research and studying everything I could about Parkinson's

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disease. My degrees in biology, so I enjoyed reading the studies and the findings and how it could

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apply to my life and make my life better. At the same time that I was doing all this extensive

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research, I also wanted to study what was it about certain individuals with Parkinson's that were

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still able to do exceptional things. I noticed there was people that were running marathons,

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that were climbing mountains, there were professional baseball players with Parkinson's.

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What were these people doing that made them exceptional? Why were they able to continue to do the

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things that they were doing after a Parkinson's diagnosis? I mean, after all, most of us,

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when we get a Parkinson's diagnosis, think that our life has changed forever, that the things that

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we used to do were not going to be able to do anymore. Well, that's a fallacy that I wanted to point out

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that we can still continue to do the things that we want to do if we choose to do so.

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So it was based on this research and studying these exceptional people that I developed the four

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strategies where I call them pillars as well, that I was going to use as my guidepost to how I was

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going to live my life with Parkinson's. Since I developed these strategies, I've had laser-like focus,

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which has enabled me to continue to participate in family activities,

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continue to do the exercises I enjoy and stay active with my hobbies. I love to play guitar,

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play songs for friends and family, learn new songs, challenge myself with solos. I also love

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tying flies in fly fishing. I enjoy the piece of the outdoors when I'm fly fishing in an aisle,

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so enjoy going out to my cabin and sitting around the campfire with my friends and family,

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talking about the world and how things are. But to be honest, I don't want to paint a completely

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rosy picture either because there are many challenging days that I have to push through with Parkinson's,

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days with poor balance, tremors, which make it difficult to do tasks that require fine motor schools,

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some days my tremors are bad enough that I can't practice guitar or tie flies. So I don't look at it as

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an impediment, I look at it as okay, if I can't do this today, what can I do instead? Also,

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if you think about all the wonderful motor and non-motor symptoms that are associated with Parkinson's,

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lack of sleep, anxiety,

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muscle cramps that wake you up in the middle of the night, all those things that come with Parkinson's,

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I've experienced, so I don't want to paint a rosy picture and have you think that, oh, I've lived in

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exceptional life, but that everything is peaches and cream because there are days that's a struggle,

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but it's all about how you approach life. So really, what I want to do is recognize the struggles that

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we all go through on a daily basis, but I want to show you at the at the end of this podcast and

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future podcast that we can overcome the struggles and challenges and still live a happy and

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rewarding and challenging life. Now that you have some perspective on my Parkinson's journey and how I

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developed the four strategies for living in exceptional life, let's pull back the curtain and reveal

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what they are. The four strategies that I use for leading in exceptional life are,

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number one, and one that I consider probably the most important along with my medication is exercise,

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exercise is the first pillar. Number two, nutrition. Good nutrition is a key to help maintain

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a healthy and active lifestyle, so I'll talk a little bit more about nutrition here in a few moments.

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Number three, which is one of my personal favorites, and I've actually written several articles on

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and it goes along with the number one pillar that I talked about exercise. Number three is attitude.

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Our attitude defines our attitude as they say. And finally, number four is just as important as

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the others, and that is community and social interaction. It's important to maintain social interactions

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on a daily basis so that you can continue to live a great quality of life and do the things that you

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want to do and stay active with your family for family gatherings for holidays and to do the things

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that you like to do with your friends, whether it's go to a movie or go out to dinner, bowling, golf,

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all those things. You want to be able to continue to do those. So again, just to recap the four

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strategies are, number one, exercise, number two, nutrition, number three, attitude, and number four

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social interactions and community. Now let's take a look at each strategy in a little more detail.

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Now I want you to keep in mind that in future episodes, I'm going to be having experts on

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to discuss in each of these topic areas to provide more detail and share research

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and their experiences to help you with things that you can use to interact

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on a daily basis to have a great quality of life. And also be having some friends and family on them.

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I actually participated in a group at the York PA Jewish Community Center and the program is called

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Momentum and it was developed by Susana Gillespie and Jen Winners and it's designed for people with

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Parkinson's disease and other neurological disorders to help improve exercise, cognition, flexibility,

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balance. It's a great overall program which I'll be talking about a little bit more here and

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as we dive deeper into the strategies. So let me share how I use the four strategies.

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Starting off with number one, exercise. I like to incorporate a broad range of different types of

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exercises because I enjoy a lot of different exercises and that's one of the recommendations that

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I would make to you is that pick exercises that you enjoy because if you don't enjoy it,

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you're not going to stick with it and exercise is so important in Parkinson's to help with mobility,

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flexibility, strength and balance that you want to pick exercises are going to keep you active.

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So whether that be walking with, you know, your spouse, walking with a friend, dog walking group,

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swimming, group fitness activities, taking a yoga class, just do what you like and if you do

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what you like, you'll continue doing it. So when I look at when I approach exercise, like I said,

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I include a broad range of different exercises but I really target the exercises that I

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am involved with to help me with my balance, my strength and flexibility, my cognition,

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all those things are important in helping me maintain a good quality of life and being active in the

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community. In addition, I participate in group activities. One of the benefits of these is not only

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are they challenging from an exercise perspective but they give me a great opportunity to have social

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interactions with a great group of people and number one, it gives me a sense of camaraderie that I

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feel part of the group but in addition, in group fitness class is also people in their support each other

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and are going to help cheer and lead you to where you want to go. In addition, they push

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you to do things that you didn't think you were going to be able to accomplish.

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The people in the class will push you and help you overcome some of the obstacles that you think

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are in your way. So if I had one recommendation, it would be that you participate in group fitness activities.

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So what exercises do I do? I walk on a daily basis because I think walking is important.

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I do lap-swimming three times a week because it's great for flexibility and believe it or not, balance.

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I participate in a class called Soul Fusion. Soul Fusion is a combination of yoga, strength, flexibility,

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and core training. It throws a little bit of cardio in there as well so it's a great class. I also

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participate in a bar class that's B-A-R-R-E and that's a combination of cardio, weights, stretching,

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and pilates. I do a spin class once a week and then I also participate in water aerobics.

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In addition to that, I do the momentum program which is designed for people with Parkinson's

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and other neurological disorders but we spend a great deal of time on doing exercises that

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are going to help with our balance, our flexibility, our strength, and our cognition.

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So a lot of times we'll combine exercises to do two things at one time.

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But I'll give you some more information on the momentum program in the description for this podcast

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and a link if you want to find out just what momentum involves.

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Now that I've shared my exercise program with you, I want to turn our attention to why exercise is

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important for those of us living with Parkinson's. If you look at the research, there are four

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particular benefits that I want to point out on how exercise can help you maintain a good quality of

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life. So let's take a look at those benefits now. Number one, it can help you improve your motor function.

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One of the things that we often run into with Parkinson's is that we have a stoop posture,

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we start to shove our feet or become slow. Improving your motor function through exercises can help

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you with your balance, your coordination, and your agility. And those are all important so that

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you can help prevent falls. That's one of the dangers that we want to prevent is having a fall because

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that can lead to other devastating type of injuries. Number two is increase strength and flexibility.

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Exercise helps improve both your muscle tone, your strength, and your flexibility.

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Flexibility exercises such as stretching and yoga are very important. I recommend doing

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stretching every day. It helps to keep you opened up and helps keep you from from

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hunching over because as you know, Parkinson's causes the muscles to become rigid and we turn our

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shoulders in and we start to hunch over. Yoga can be exercising or stretching in yoga can be

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very important to help increase your range of motion and improve your joint mobility. So if you haven't

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tried it, it's a great, they're both great exercises and I recommend trying to do them at least

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a several times a week to help maintain your flexibility. Number three is enhance cardio vascular

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fitness. One of the things that we want to help make sure is that we keep our heart and lungs healthy

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and we can do that through aerobic exercises, which I'll share with you in just a few moments, but

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keeping your cardiovascular system healthy is going to help make sure that you can do the things that

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you want to do and you don't have to sit on the sidelines and watch watch other people. And number four,

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mood elevation and well-being. You've probably heard of the runners high, but exercise releases

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endorphins and they can help you elevate your mood. One of the things that endorphins can help you

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with is they can help reduce anxiety and then oftentimes even help alleviate depression that we

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may go along with Parkinson's disease. So these are four distinct benefits that you can get from

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exercise. So that's why exercise is my number one pillar that I talked about. Another thing,

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regular exercise can help improve your cognitive function and attention to memory. That's one thing

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I try to work on a lot through reading games or work on writing blogs for websites. So it's important

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that you keep your mind engaged and always challenging yourself so that you can help maintain your

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cognitive function. In fact, there was a study done that was published and shared by the National

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Parkinson's Foundation and it's called the Parkinson's Outcome Project and it showed that people with

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PD who start exercising early in the course of their disease for a minimum of just two and a half

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hours per week experienced a slower decline in the quality of life compared to those who started

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later. So that's additional data that shows you that exercise is so important in helping you

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to maintain an active lifestyle. So what type of exercise you should I should I deal? You're

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probably asking yourself that question. Let's take a look at some. First off,

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one of the things that I try to work on at least several times a week is balance exercises.

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High Qi is a great course to take for balance as well as yoga, dancing in non-contact boxing or

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they're all great exercises to help you with your balance. Balance is so important in helping to

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prevent falls. Number two is coordination activities, walking, cycling, dancing. Those

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are all considered coordination activities. You need to be able to coordinate your arms in your

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legs as well as balance at the same time. So those three type of activities are a great way to

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work on your coordination. Strength and flexibility. Maybe you don't have the opportunity to go

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to the gym. You can get resistance bands off of online. You can use free weights, kettlebells,

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weight plates, but you can also just do body weight exercises. You can do pushups and squats.

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Those are all going to help you build strength and flexibility. And you can also use common household

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items, probably things that you don't even think about. Can goods, you can use towels for doing

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tricep extensions. You can take empty luggage and use two at a time to work on squats.

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So there's a lot of household items that you can use, water jugs, milk jugs. You can use those for

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bicep curls, shoulder press, a lot of different exercises. So you don't necessarily have to join

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a fitness center to be able to experience the benefits of exercise. It's important to look around

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the house and see what's available. Another type of exercise that I think is important is cardio

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fitness. We talked about cardio vascular fitness as one of the benefits. And so what are some cardio

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exercises that are that may help you out walking, cycling, boxing, dancer, zumba, swimming or water

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fitness, even simple things like yard work, work, work around the house. Those are all aerobic exercises

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that are designed to get your heart rate up. And that's really the purpose of helping to build your

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cardio vascular fitness is to build up your, to increase your heart rate and make it more efficient.

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And then number five is exercises that help with your mood and well-being. You're probably thinking

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yourself, well, how is the exercise going to help me with my mood and well-being? Well, there's a lot

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of unique classes that you can take. They're also available on YouTube. They will include Thai Chi,

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zumba. There's a program called Dancing for Parkinson's Disease and Boxing. These are all exercises that

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are going to help you with your mood and your well-being. So that's a brief summary of the first

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pillar exercise. Now let's turn our attention to the second strategy or pillar, which is nutrition.

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All right, let's talk about nutrition. It's important that people with Parkinson's make sure that you're

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getting both your macronutrients and your micronutrients. You're probably asking yourself, what's the

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difference between a macro and a micronutrient? Glad you asked that question. Macronutrients would be

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your protein, carbohydrates and fats. And the easy way that I try to remember, it's not always the

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case, but the majority of the time it is, is the easy way to remember it is proteins walk around

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above the ground. Corbohydrates are in the ground. So proteins would be your meats, your dairy products,

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your eggs, and your nuts. All those, if you think about it, come from animals that walk on the ground.

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And chickens laying eggs and then nuts from trees that grow.

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Carbohydrates, not all, but most are grown in the ground. And those would include all your vegetables.

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But they also include your your grains such as wheat, corn, rice, barley.

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So you want to look for complex carbohydrate, carbohydrate that contain a lot of fiber because fiber is

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going to help slow digestion and you're going to get more benefit. So look for oatmeal, mochi green

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breads, low sugar cereals, and then make sure you eat plenty of colorful fruits and vegetables.

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Now one of the things with proteins that I don't want to mention is that a lot of, especially with

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carbidopa levodopa that if you eat too much protein, taking it too close to your dose, it can

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block the absorption of your protein. So it's important that you try to stay away from taking your

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carbidopa levodopa if you're going to be eating a lot of proteins at a particular meal.

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And then finally are the fats. You know, a lot of times we panic and say, "Oh, we have to avoid fat."

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No, fats are actually a central part of your diet. But what you want to do is minimize

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saturated fats. Those would be your animal fats and butters. So, and also your trans fats,

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things like margarine and trans fats are fats that help keep a product stable for a long period of

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time so it can sit on the shelf. So some examples of healthy fats that you really want to focus on,

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olive oil, avocados or a great source of fat. We put those in salads on sandwiches. And then

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your fish oils are all another great source of fats. Now, that's the macronutrients, proteins,

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carbohydrates and fats, but what are micronutrients? These would be your vitamins and minerals.

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One of the important vitamins and minerals that you want to take is both vitamin D and calcium,

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which are going to help work in combination to help prevent osteoporosis,

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brittle bones. So you don't want to have brittle bones which can cause you to fall and then have

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hip fractures and other fractures that can put you in a rehabilitation center for a while.

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Vitamin A is important for vision, but there's a lot of different vitamins out there. So,

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ask your doctor which vitamins and minerals are most appropriate for you as part of your

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health plan. So remember, it's all about balance. Now, my perfect and my diet absolutely not,

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you know, it'd be perfectly honest with you. It's, you know, if you put a bag of chips down or,

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you know, if somebody brings over a pie on the first in line. So I have to, you know,

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make sure that I have balance in my nutrition as well. So try to eat healthy and majority of the time,

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eating healthy and majority of the time and getting your macro and micronutrients is going to

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help you ensure that you're getting all the essential nutrients that you need. All right. Now,

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let's take a look at killer number three, which is attitude, which is again one of my favorites. So,

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let's dive right in. Right now, let's turn our attention to strategy number three,

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which is one of my personal favorites and ranks right up there with exercise and that is add

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to attitude. I think attitude is so important in helping you live an exceptional life after

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Parkinson's diagnosis. I think most people would tend to tell you that I live a very positive

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life and I try to share that positivity with others because people that are positive tend to be

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more engaged in social activities. They're more empathetic. They like to listen to what people say.

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So, I think it's important that I start off my day with the three things that I'm grateful for.

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It really helps set the tone for the day and it helps me start off on a positive note.

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So, are there really benefits to living with a positive attitude? Well, they're absolutely

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or there's a ton of research out there on it, but I'm going to save a lot of that for podcast number

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two, so I don't want to spoil what's going to come up in the next episode. So, I'm just going to

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touch briefly on some of the benefits of living a positive life so that you can have a great quality

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of life as well. Number one is it helps to with resilience. You know, every day we face challenges.

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We wake up in the morning, some days are more challenging than others. Some days we may have

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more problems with our fine motor skills or we may have trouble with our balance.

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But having a positive attitude is going to help you remain resilient and work through those

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challenges and come out the other side and feel good about the accomplishments that you've had,

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even though you had challenges in your way, you used resilience to help you

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push forward and accomplish the goals that you wanted to accomplish. Another thing that a positive

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attitude does is really helps with anxiety. You know, we know that depression and anxiety occur in

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about 60% of people with Parkinson's and if you have a positive attitude, it's hard to be anxious

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when you're positive. Think about your doing an activity that you're really enjoying with your

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with your family and friends you're having fun. Are you, typically anxious? No, you're typically

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not thinking about being nervous or anxious about what's going to happen because you're involved

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in the moment. And that's one of the keys with having a positive attitude. It helps you to stay

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in the moment so that you can enjoy the activities that you're participating in.

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Positive attitude also tends to help people maintain an engage in healthy behaviors like number one

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exercise. That was our first strategy. People with a positive attitude tend to, you know, have a more

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regular exercise program and are looking to stay healthy through exercise. They also

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tend to eat a more balanced diet. That was a strategy number two of nutrition. You know, people that

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have a positive attitude tend to eat a lot of fruits and vegetables, cranes, lean meats and those

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type of things to stay healthy. Now, does that mean that they don't indulge in other things? Absolutely

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not, but overall they, it helps them maintain a balanced diet. It also helps in getting adequate

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sleep. If you have a positive attitude, you tend to sleep better. And a positive attitude has been

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shown to help boost your immune system and help us recover from illnesses more quickly. You know,

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negative people, it seemed to take longer to overcome illness than other people.

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And a number, it also helps to improve your relationships. You know, positive people tend to attract

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positive people. You know, positive energy, you know, attracts, you know, positive energy and you want

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it, and it helps to build stronger relationships. It helps optimize communication. You're people that

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have a positive attitude tend to be great listeners. One of the things that I learned at a manager's

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meeting about 20 years ago, and I'll stay, I still remember it to this day is that you have two

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years in one mouth, use them in that order. And that really struck home to me because what it taught me

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is that instead of trying to formulate what I wanted to say, well, a person is talking,

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use the two ears that I have to really listen to what they have to say. And because a lot of times,

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they're trying to convey how they feel and then use, and then respond because then you've actually

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listened to what they were trying to tell you. It helps positive attitude also helps with success.

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You know, people that have a positive attitude tend to set ambitious goals. And, you know,

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take on challenges that they a lot of times they didn't think they could do. Maybe someone signs

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up and says, I want to, I want to run a marathon or I want to, you know, cycle for 500 miles.

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So, a positive attitude is going to help overcome challenges, set goals, and then also help us persist

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when there's adversity because we're all, we all face adversity in our life, a positive attitude is

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going to help with that. I'm going to go into a lot more detail as we move into future segments. So,

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I don't, like I said, I don't want to give it away here, but if you have a positive attitude,

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and you live in you share that with others, you're going to have an exceptional quality of life. So,

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living with a positive attitude is, you know, to me, one of the best things that you can do to help

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live an exceptional life. All right. So now let's take a look at the final strategy. And then we'll wrap

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this up. All right. Let's look at the fourth and final strategy that I've used to help me live

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an exceptional life. And that is community and social interaction. So why is social interaction

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so important? Number one is it helps prevent isolation. You know, a lot of people with parking,

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when they've got a Parkinson's diagnosis may just give up and drop out a lot of the activities that

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they participated and enjoyed. And then they become homebound and isolated. And that causes

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leads to a whole host of other issues such as depression, anxiety that, you know, we really want to

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help prevent. So maintaining your social interactions with your family and friends is so important.

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Social interaction also gives you emotional support. Whether it's a club that you're in, whether

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it's your family and friends, whether it's a society that you belong to, you're going to get the

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emotional support you need when you participate and engage with others. So staying socially active is

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so important. It also helps with cognitive stimulation. You know, when you're dealing with others,

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maybe you get together and you play trivia games or you sit around and discuss current events or

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you're part of a book club, all those things help with cognitive stimulation, which is important to

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help maintain your cognitive level and prevent cognitive decline. So cognitive stimulation is one

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of the key things that's going to come out of social interactions. Another thing is it also gives you

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a sense of purpose. You know, if you wake up and you are, you know that you're part of a group

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organization and you have responsibilities, it gives you a sense of purpose, a sense of pride

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and accomplishment. So for instance, you're part of the Lions club or, you know, another organization

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that is you're helping people. If you, it gives you a sense of purpose and makes you feel good

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that you're interacting and helping others. And finally, it gives you the chance to learn and share

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information, whether it's with your family and friends or whether it's with a group that you

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belong to. So it gives you the opportunity to learn from others as well. So social interaction is

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so important in helping to prevent isolation and give you a great quality of life because

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you're going to stay actively engaged and it's going to help with a whole host of other things.

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So those are the four strategies. Let's get back in, review those.

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So to wrap this up and tie it all together, let's, let's review the four strategies that I've

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used to help me live an exceptional life. Number one, exercise. So important in helping you

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maintain your mobility, balance, flexibility and strength. Number two is nutrition. Make sure that

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you eat a balanced diet is going to help you keep maintaining both your health and an active lifestyle.

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Number three is attitude. A positive attitude is going to help you with resilience and give you

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the ability to overcome challenges. And then finally, number four was community and social interaction,

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which is so important in preventing isolation and getting you the emotional support that you need.

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So these are the four strategies that I used to lead an exceptional life. Now my goal is to help

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as many people living with Parkinson's lead an exceptional life and a productive life.

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So if you know of others who can benefit from these strategies, please let them know about this

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podcast. I'd also ask you if you please visit my website, liveparkinsons.com and sign up for the

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free monthly newsletter. I provide a lot of in-depth information on new products that are out new therapies,

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new equipment, other things, plus there's a what's new corner. And then I also share webinars that

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are available and seminars as well. And that also requests that you please provide any comments,

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questions or reviews on my contact page. I'd love to hear your thoughts and suggestions on how I can

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improve this podcast. And I also want to say that it's an open community where we can share successes

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and help each other. That's the ultimate goal is to be able to help each other live great

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quality of lives. We're interested in more about the four strategies. I wrote a book called

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Spectacular Life, Four Strategies for Living with Parkinson's Disease, My Road to Happiness.

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It's available on Amazon and I will put a link in the description for this podcast.

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[Music]