[Music]
Hello, welcome to Live Parkinson's, a show dedicated to helping people with
living with Parkinson's live an exceptional life.
I'm your host, Chris Kustanbauter, and I've been living an exceptional life with Parkinson's
for the past 13 years. This podcast is focused on the four strategies that I've been using to lead
an exceptional life with Parkinson's. These strategies were developed through extensive research
in studying people with Parkinson's who are accomplishing great things. This podcast is designed
for people living with Parkinson's, their family and friends, caregivers, and anybody else who can
help you live in a great quality of life after your Parkinson's diagnosis. In this episode,
I will unveil my four strategies for living an exceptional life with Parkinson's.
I will go into great detail and subsequent podcasts on each strategy, so I hope you will join me
in future episodes. Now, before we dive in, I have a brief disclaimer that this podcast is for
educational purposes and is not designed to diagnose or treat Parkinson's. Please ensure you're
following the specific treatment plan that your physician designed with you based on your specific
health needs. Information being shared is based on my own personal experiences living with Parkinson's.
So, let's dive in. Were you a family member overwhelmed and confused about the diagnosis you
received and didn't know where to turn or what to do? I know exactly how you feel. That's why I wanted
to start this podcast. I wanted to help others by sharing what I've learned over these past 13 years,
based on the best research and the latest research to help me maintain and lead a great quality of
life. So, let me start by briefly sharing my journey with Parkinson's because I think it'll give
you some good perspective on how I developed the four strategies that we're going to be talking about
in just a few moments. So, if you'll indulge me for a few minutes, then I'll unveil my four strategies
in the hopes that they that they can help you and your family on your Parkinson's journey.
Every life has a story and this is my story. My Parkinson's journey began in 2011.
When I was just 47 years old, I began noticing I had a tremor in my left hand
and it wouldn't go away. And then as I was taking walks with my wife, I noticed I was dragging my
left leg. So, I made an appointment with a primary care physician. He conducted some tests and
then referred me to a neurologist. The neurologist tried a number of different tests to try to figure out
what was going on and then eventually referred me to the University of Maryland Neurology Clinic.
It was there that I received my diagnosis of Parkinson's disease.
After I left the clinic and on my hour ride home, I began staring out the window,
you know, thinking about the diagnosis I had just received. And I realized I was at a crossroads
in my life. I had two choices. I could choose the dark road on the right and decide I'm just going to
go home, drop out of a lot of the activities that I enjoyed, drop out of a lot of the social activities
that I participated in and just, you know, become homebound. Or I could choose the path on the left,
the bright side, that side of the road enabled me to take control of Parkinson's because what I
decided at that particular moment was that I own my life, not Parkinson's. Parkinson's was just
along for the journey. So, it was at that point that I decided to take control of my life,
begin to develop the four strategies that I'm going to be talking about in a moment.
So, after making the decision that I was going to control Parkinson's and not let it control me,
I spent the next two months doing extensive research and studying everything I could about Parkinson's
disease. My degrees in biology, so I enjoyed reading the studies and the findings and how it could
apply to my life and make my life better. At the same time that I was doing all this extensive
research, I also wanted to study what was it about certain individuals with Parkinson's that were
still able to do exceptional things. I noticed there was people that were running marathons,
that were climbing mountains, there were professional baseball players with Parkinson's.
What were these people doing that made them exceptional? Why were they able to continue to do the
things that they were doing after a Parkinson's diagnosis? I mean, after all, most of us,
when we get a Parkinson's diagnosis, think that our life has changed forever, that the things that
we used to do were not going to be able to do anymore. Well, that's a fallacy that I wanted to point out
that we can still continue to do the things that we want to do if we choose to do so.
So it was based on this research and studying these exceptional people that I developed the four
strategies where I call them pillars as well, that I was going to use as my guidepost to how I was
going to live my life with Parkinson's. Since I developed these strategies, I've had laser-like focus,
which has enabled me to continue to participate in family activities,
continue to do the exercises I enjoy and stay active with my hobbies. I love to play guitar,
play songs for friends and family, learn new songs, challenge myself with solos. I also love
tying flies in fly fishing. I enjoy the piece of the outdoors when I'm fly fishing in an aisle,
so enjoy going out to my cabin and sitting around the campfire with my friends and family,
talking about the world and how things are. But to be honest, I don't want to paint a completely
rosy picture either because there are many challenging days that I have to push through with Parkinson's,
days with poor balance, tremors, which make it difficult to do tasks that require fine motor schools,
some days my tremors are bad enough that I can't practice guitar or tie flies. So I don't look at it as
an impediment, I look at it as okay, if I can't do this today, what can I do instead? Also,
if you think about all the wonderful motor and non-motor symptoms that are associated with Parkinson's,
lack of sleep, anxiety,
muscle cramps that wake you up in the middle of the night, all those things that come with Parkinson's,
I've experienced, so I don't want to paint a rosy picture and have you think that, oh, I've lived in
exceptional life, but that everything is peaches and cream because there are days that's a struggle,
but it's all about how you approach life. So really, what I want to do is recognize the struggles that
we all go through on a daily basis, but I want to show you at the at the end of this podcast and
future podcast that we can overcome the struggles and challenges and still live a happy and
rewarding and challenging life. Now that you have some perspective on my Parkinson's journey and how I
developed the four strategies for living in exceptional life, let's pull back the curtain and reveal
what they are. The four strategies that I use for leading in exceptional life are,
number one, and one that I consider probably the most important along with my medication is exercise,
exercise is the first pillar. Number two, nutrition. Good nutrition is a key to help maintain
a healthy and active lifestyle, so I'll talk a little bit more about nutrition here in a few moments.
Number three, which is one of my personal favorites, and I've actually written several articles on
and it goes along with the number one pillar that I talked about exercise. Number three is attitude.
Our attitude defines our attitude as they say. And finally, number four is just as important as
the others, and that is community and social interaction. It's important to maintain social interactions
on a daily basis so that you can continue to live a great quality of life and do the things that you
want to do and stay active with your family for family gatherings for holidays and to do the things
that you like to do with your friends, whether it's go to a movie or go out to dinner, bowling, golf,
all those things. You want to be able to continue to do those. So again, just to recap the four
strategies are, number one, exercise, number two, nutrition, number three, attitude, and number four
social interactions and community. Now let's take a look at each strategy in a little more detail.
Now I want you to keep in mind that in future episodes, I'm going to be having experts on
to discuss in each of these topic areas to provide more detail and share research
and their experiences to help you with things that you can use to interact
on a daily basis to have a great quality of life. And also be having some friends and family on them.
I actually participated in a group at the York PA Jewish Community Center and the program is called
Momentum and it was developed by Susana Gillespie and Jen Winners and it's designed for people with
Parkinson's disease and other neurological disorders to help improve exercise, cognition, flexibility,
balance. It's a great overall program which I'll be talking about a little bit more here and
as we dive deeper into the strategies. So let me share how I use the four strategies.
Starting off with number one, exercise. I like to incorporate a broad range of different types of
exercises because I enjoy a lot of different exercises and that's one of the recommendations that
I would make to you is that pick exercises that you enjoy because if you don't enjoy it,
you're not going to stick with it and exercise is so important in Parkinson's to help with mobility,
flexibility, strength and balance that you want to pick exercises are going to keep you active.
So whether that be walking with, you know, your spouse, walking with a friend, dog walking group,
swimming, group fitness activities, taking a yoga class, just do what you like and if you do
what you like, you'll continue doing it. So when I look at when I approach exercise, like I said,
I include a broad range of different exercises but I really target the exercises that I
am involved with to help me with my balance, my strength and flexibility, my cognition,
all those things are important in helping me maintain a good quality of life and being active in the
community. In addition, I participate in group activities. One of the benefits of these is not only
are they challenging from an exercise perspective but they give me a great opportunity to have social
interactions with a great group of people and number one, it gives me a sense of camaraderie that I
feel part of the group but in addition, in group fitness class is also people in their support each other
and are going to help cheer and lead you to where you want to go. In addition, they push
you to do things that you didn't think you were going to be able to accomplish.
The people in the class will push you and help you overcome some of the obstacles that you think
are in your way. So if I had one recommendation, it would be that you participate in group fitness activities.
So what exercises do I do? I walk on a daily basis because I think walking is important.
I do lap-swimming three times a week because it's great for flexibility and believe it or not, balance.
I participate in a class called Soul Fusion. Soul Fusion is a combination of yoga, strength, flexibility,
and core training. It throws a little bit of cardio in there as well so it's a great class. I also
participate in a bar class that's B-A-R-R-E and that's a combination of cardio, weights, stretching,
and pilates. I do a spin class once a week and then I also participate in water aerobics.
In addition to that, I do the momentum program which is designed for people with Parkinson's
and other neurological disorders but we spend a great deal of time on doing exercises that
are going to help with our balance, our flexibility, our strength, and our cognition.
So a lot of times we'll combine exercises to do two things at one time.
But I'll give you some more information on the momentum program in the description for this podcast
and a link if you want to find out just what momentum involves.
Now that I've shared my exercise program with you, I want to turn our attention to why exercise is
important for those of us living with Parkinson's. If you look at the research, there are four
particular benefits that I want to point out on how exercise can help you maintain a good quality of
life. So let's take a look at those benefits now. Number one, it can help you improve your motor function.
One of the things that we often run into with Parkinson's is that we have a stoop posture,
we start to shove our feet or become slow. Improving your motor function through exercises can help
you with your balance, your coordination, and your agility. And those are all important so that
you can help prevent falls. That's one of the dangers that we want to prevent is having a fall because
that can lead to other devastating type of injuries. Number two is increase strength and flexibility.
Exercise helps improve both your muscle tone, your strength, and your flexibility.
Flexibility exercises such as stretching and yoga are very important. I recommend doing
stretching every day. It helps to keep you opened up and helps keep you from from
hunching over because as you know, Parkinson's causes the muscles to become rigid and we turn our
shoulders in and we start to hunch over. Yoga can be exercising or stretching in yoga can be
very important to help increase your range of motion and improve your joint mobility. So if you haven't
tried it, it's a great, they're both great exercises and I recommend trying to do them at least
a several times a week to help maintain your flexibility. Number three is enhance cardio vascular
fitness. One of the things that we want to help make sure is that we keep our heart and lungs healthy
and we can do that through aerobic exercises, which I'll share with you in just a few moments, but
keeping your cardiovascular system healthy is going to help make sure that you can do the things that
you want to do and you don't have to sit on the sidelines and watch watch other people. And number four,
mood elevation and well-being. You've probably heard of the runners high, but exercise releases
endorphins and they can help you elevate your mood. One of the things that endorphins can help you
with is they can help reduce anxiety and then oftentimes even help alleviate depression that we
may go along with Parkinson's disease. So these are four distinct benefits that you can get from
exercise. So that's why exercise is my number one pillar that I talked about. Another thing,
regular exercise can help improve your cognitive function and attention to memory. That's one thing
I try to work on a lot through reading games or work on writing blogs for websites. So it's important
that you keep your mind engaged and always challenging yourself so that you can help maintain your
cognitive function. In fact, there was a study done that was published and shared by the National
Parkinson's Foundation and it's called the Parkinson's Outcome Project and it showed that people with
PD who start exercising early in the course of their disease for a minimum of just two and a half
hours per week experienced a slower decline in the quality of life compared to those who started
later. So that's additional data that shows you that exercise is so important in helping you
to maintain an active lifestyle. So what type of exercise you should I should I deal? You're
probably asking yourself that question. Let's take a look at some. First off,
one of the things that I try to work on at least several times a week is balance exercises.
High Qi is a great course to take for balance as well as yoga, dancing in non-contact boxing or
they're all great exercises to help you with your balance. Balance is so important in helping to
prevent falls. Number two is coordination activities, walking, cycling, dancing. Those
are all considered coordination activities. You need to be able to coordinate your arms in your
legs as well as balance at the same time. So those three type of activities are a great way to
work on your coordination. Strength and flexibility. Maybe you don't have the opportunity to go
to the gym. You can get resistance bands off of online. You can use free weights, kettlebells,
weight plates, but you can also just do body weight exercises. You can do pushups and squats.
Those are all going to help you build strength and flexibility. And you can also use common household
items, probably things that you don't even think about. Can goods, you can use towels for doing
tricep extensions. You can take empty luggage and use two at a time to work on squats.
So there's a lot of household items that you can use, water jugs, milk jugs. You can use those for
bicep curls, shoulder press, a lot of different exercises. So you don't necessarily have to join
a fitness center to be able to experience the benefits of exercise. It's important to look around
the house and see what's available. Another type of exercise that I think is important is cardio
fitness. We talked about cardio vascular fitness as one of the benefits. And so what are some cardio
exercises that are that may help you out walking, cycling, boxing, dancer, zumba, swimming or water
fitness, even simple things like yard work, work, work around the house. Those are all aerobic exercises
that are designed to get your heart rate up. And that's really the purpose of helping to build your
cardio vascular fitness is to build up your, to increase your heart rate and make it more efficient.
And then number five is exercises that help with your mood and well-being. You're probably thinking
yourself, well, how is the exercise going to help me with my mood and well-being? Well, there's a lot
of unique classes that you can take. They're also available on YouTube. They will include Thai Chi,
zumba. There's a program called Dancing for Parkinson's Disease and Boxing. These are all exercises that
are going to help you with your mood and your well-being. So that's a brief summary of the first
pillar exercise. Now let's turn our attention to the second strategy or pillar, which is nutrition.
All right, let's talk about nutrition. It's important that people with Parkinson's make sure that you're
getting both your macronutrients and your micronutrients. You're probably asking yourself, what's the
difference between a macro and a micronutrient? Glad you asked that question. Macronutrients would be
your protein, carbohydrates and fats. And the easy way that I try to remember, it's not always the
case, but the majority of the time it is, is the easy way to remember it is proteins walk around
above the ground. Corbohydrates are in the ground. So proteins would be your meats, your dairy products,
your eggs, and your nuts. All those, if you think about it, come from animals that walk on the ground.
And chickens laying eggs and then nuts from trees that grow.
Carbohydrates, not all, but most are grown in the ground. And those would include all your vegetables.
But they also include your your grains such as wheat, corn, rice, barley.
So you want to look for complex carbohydrate, carbohydrate that contain a lot of fiber because fiber is
going to help slow digestion and you're going to get more benefit. So look for oatmeal, mochi green
breads, low sugar cereals, and then make sure you eat plenty of colorful fruits and vegetables.
Now one of the things with proteins that I don't want to mention is that a lot of, especially with
carbidopa levodopa that if you eat too much protein, taking it too close to your dose, it can
block the absorption of your protein. So it's important that you try to stay away from taking your
carbidopa levodopa if you're going to be eating a lot of proteins at a particular meal.
And then finally are the fats. You know, a lot of times we panic and say, "Oh, we have to avoid fat."
No, fats are actually a central part of your diet. But what you want to do is minimize
saturated fats. Those would be your animal fats and butters. So, and also your trans fats,
things like margarine and trans fats are fats that help keep a product stable for a long period of
time so it can sit on the shelf. So some examples of healthy fats that you really want to focus on,
olive oil, avocados or a great source of fat. We put those in salads on sandwiches. And then
your fish oils are all another great source of fats. Now, that's the macronutrients, proteins,
carbohydrates and fats, but what are micronutrients? These would be your vitamins and minerals.
One of the important vitamins and minerals that you want to take is both vitamin D and calcium,
which are going to help work in combination to help prevent osteoporosis,
brittle bones. So you don't want to have brittle bones which can cause you to fall and then have
hip fractures and other fractures that can put you in a rehabilitation center for a while.
Vitamin A is important for vision, but there's a lot of different vitamins out there. So,
ask your doctor which vitamins and minerals are most appropriate for you as part of your
health plan. So remember, it's all about balance. Now, my perfect and my diet absolutely not,
you know, it'd be perfectly honest with you. It's, you know, if you put a bag of chips down or,
you know, if somebody brings over a pie on the first in line. So I have to, you know,
make sure that I have balance in my nutrition as well. So try to eat healthy and majority of the time,
eating healthy and majority of the time and getting your macro and micronutrients is going to
help you ensure that you're getting all the essential nutrients that you need. All right. Now,
let's take a look at killer number three, which is attitude, which is again one of my favorites. So,
let's dive right in. Right now, let's turn our attention to strategy number three,
which is one of my personal favorites and ranks right up there with exercise and that is add
to attitude. I think attitude is so important in helping you live an exceptional life after
Parkinson's diagnosis. I think most people would tend to tell you that I live a very positive
life and I try to share that positivity with others because people that are positive tend to be
more engaged in social activities. They're more empathetic. They like to listen to what people say.
So, I think it's important that I start off my day with the three things that I'm grateful for.
It really helps set the tone for the day and it helps me start off on a positive note.
So, are there really benefits to living with a positive attitude? Well, they're absolutely
or there's a ton of research out there on it, but I'm going to save a lot of that for podcast number
two, so I don't want to spoil what's going to come up in the next episode. So, I'm just going to
touch briefly on some of the benefits of living a positive life so that you can have a great quality
of life as well. Number one is it helps to with resilience. You know, every day we face challenges.
We wake up in the morning, some days are more challenging than others. Some days we may have
more problems with our fine motor skills or we may have trouble with our balance.
But having a positive attitude is going to help you remain resilient and work through those
challenges and come out the other side and feel good about the accomplishments that you've had,
even though you had challenges in your way, you used resilience to help you
push forward and accomplish the goals that you wanted to accomplish. Another thing that a positive
attitude does is really helps with anxiety. You know, we know that depression and anxiety occur in
about 60% of people with Parkinson's and if you have a positive attitude, it's hard to be anxious
when you're positive. Think about your doing an activity that you're really enjoying with your
with your family and friends you're having fun. Are you, typically anxious? No, you're typically
not thinking about being nervous or anxious about what's going to happen because you're involved
in the moment. And that's one of the keys with having a positive attitude. It helps you to stay
in the moment so that you can enjoy the activities that you're participating in.
Positive attitude also tends to help people maintain an engage in healthy behaviors like number one
exercise. That was our first strategy. People with a positive attitude tend to, you know, have a more
regular exercise program and are looking to stay healthy through exercise. They also
tend to eat a more balanced diet. That was a strategy number two of nutrition. You know, people that
have a positive attitude tend to eat a lot of fruits and vegetables, cranes, lean meats and those
type of things to stay healthy. Now, does that mean that they don't indulge in other things? Absolutely
not, but overall they, it helps them maintain a balanced diet. It also helps in getting adequate
sleep. If you have a positive attitude, you tend to sleep better. And a positive attitude has been
shown to help boost your immune system and help us recover from illnesses more quickly. You know,
negative people, it seemed to take longer to overcome illness than other people.
And a number, it also helps to improve your relationships. You know, positive people tend to attract
positive people. You know, positive energy, you know, attracts, you know, positive energy and you want
it, and it helps to build stronger relationships. It helps optimize communication. You're people that
have a positive attitude tend to be great listeners. One of the things that I learned at a manager's
meeting about 20 years ago, and I'll stay, I still remember it to this day is that you have two
years in one mouth, use them in that order. And that really struck home to me because what it taught me
is that instead of trying to formulate what I wanted to say, well, a person is talking,
use the two ears that I have to really listen to what they have to say. And because a lot of times,
they're trying to convey how they feel and then use, and then respond because then you've actually
listened to what they were trying to tell you. It helps positive attitude also helps with success.
You know, people that have a positive attitude tend to set ambitious goals. And, you know,
take on challenges that they a lot of times they didn't think they could do. Maybe someone signs
up and says, I want to, I want to run a marathon or I want to, you know, cycle for 500 miles.
So, a positive attitude is going to help overcome challenges, set goals, and then also help us persist
when there's adversity because we're all, we all face adversity in our life, a positive attitude is
going to help with that. I'm going to go into a lot more detail as we move into future segments. So,
I don't, like I said, I don't want to give it away here, but if you have a positive attitude,
and you live in you share that with others, you're going to have an exceptional quality of life. So,
living with a positive attitude is, you know, to me, one of the best things that you can do to help
live an exceptional life. All right. So now let's take a look at the final strategy. And then we'll wrap
this up. All right. Let's look at the fourth and final strategy that I've used to help me live
an exceptional life. And that is community and social interaction. So why is social interaction
so important? Number one is it helps prevent isolation. You know, a lot of people with parking,
when they've got a Parkinson's diagnosis may just give up and drop out a lot of the activities that
they participated and enjoyed. And then they become homebound and isolated. And that causes
leads to a whole host of other issues such as depression, anxiety that, you know, we really want to
help prevent. So maintaining your social interactions with your family and friends is so important.
Social interaction also gives you emotional support. Whether it's a club that you're in, whether
it's your family and friends, whether it's a society that you belong to, you're going to get the
emotional support you need when you participate and engage with others. So staying socially active is
so important. It also helps with cognitive stimulation. You know, when you're dealing with others,
maybe you get together and you play trivia games or you sit around and discuss current events or
you're part of a book club, all those things help with cognitive stimulation, which is important to
help maintain your cognitive level and prevent cognitive decline. So cognitive stimulation is one
of the key things that's going to come out of social interactions. Another thing is it also gives you
a sense of purpose. You know, if you wake up and you are, you know that you're part of a group
organization and you have responsibilities, it gives you a sense of purpose, a sense of pride
and accomplishment. So for instance, you're part of the Lions club or, you know, another organization
that is you're helping people. If you, it gives you a sense of purpose and makes you feel good
that you're interacting and helping others. And finally, it gives you the chance to learn and share
information, whether it's with your family and friends or whether it's with a group that you
belong to. So it gives you the opportunity to learn from others as well. So social interaction is
so important in helping to prevent isolation and give you a great quality of life because
you're going to stay actively engaged and it's going to help with a whole host of other things.
So those are the four strategies. Let's get back in, review those.
So to wrap this up and tie it all together, let's, let's review the four strategies that I've
used to help me live an exceptional life. Number one, exercise. So important in helping you
maintain your mobility, balance, flexibility and strength. Number two is nutrition. Make sure that
you eat a balanced diet is going to help you keep maintaining both your health and an active lifestyle.
Number three is attitude. A positive attitude is going to help you with resilience and give you
the ability to overcome challenges. And then finally, number four was community and social interaction,
which is so important in preventing isolation and getting you the emotional support that you need.
So these are the four strategies that I used to lead an exceptional life. Now my goal is to help
as many people living with Parkinson's lead an exceptional life and a productive life.
So if you know of others who can benefit from these strategies, please let them know about this
podcast. I'd also ask you if you please visit my website, liveparkinsons.com and sign up for the
free monthly newsletter. I provide a lot of in-depth information on new products that are out new therapies,
new equipment, other things, plus there's a what's new corner. And then I also share webinars that
are available and seminars as well. And that also requests that you please provide any comments,
questions or reviews on my contact page. I'd love to hear your thoughts and suggestions on how I can
improve this podcast. And I also want to say that it's an open community where we can share successes
and help each other. That's the ultimate goal is to be able to help each other live great
quality of lives. We're interested in more about the four strategies. I wrote a book called
Spectacular Life, Four Strategies for Living with Parkinson's Disease, My Road to Happiness.
It's available on Amazon and I will put a link in the description for this podcast.
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