100th Episode Special: How the PUNCH Program Transforms Parkinson's Lives Through Movement, Mentorship & Hope

100th Episode Special: How the PUNCH Program Transforms Parkinson's Lives Through Movement, Mentorship & Hope

🎉 Milestone Episode Alert! Join us for our 100th episode celebration of Live Parkinson's - Live an Exceptional Life as we welcome two extraordinary guests who have transformed countless lives in the Parkinson's community.

Meet Susannah and Megan, certified personal trainers and creators of the groundbreaking PUNCH Program (Parkinson's Unified Neurologic Conditioning and Health). These movement experts have dedicated years  developing specialized fitness programs for people with Parkinson's disease, and they've been instrumental mentors in my own 15-year Parkinson's journey.

What You'll Discover:

✅ The Science Behind Movement - How exercise creates neuroplasticity and slows Parkinson's progression
✅ PUNCH Program Secrets - training methods designed specifically for neurological conditions
✅ Practical Home Exercises - Simple movements you can do daily to improve symptoms
✅ Overcoming Exercise Barriers - Expert strategies for motivation, fear of falling, and adapting routines
✅ Community Power - Why group fitness classes create healing beyond physical benefits
✅ Real Success Stories - Inspiring transformations from the PUNCH program participants

Perfect for:

• People newly diagnosed with Parkinson's seeking exercise guidance
• Parkinson's warriors looking to optimize their fitness routine
• Caregivers and family members supporting loved ones

🎯 Take Action Now:

📖 Get FREE Resources: Visit liveparkinsons.com for exclusive articles, exercise guides, and evidence-based strategies for living exceptionally with Parkinson's.

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Chapters

• 0:10 100th Episode Celebration
• 2:31 Meeting Susanna and Megan
• 5:02 Working with Parkinson's Patients
• 9:36 The Punch Program Explained
• 14:02 Exercise Benefits for Parkinson's
• 19:14 Overcoming Gym Intimidation
• 27:30 Effective Exercises to Try at Home
• 32:11 Advice for Newly Diagnosed
• 38:23 Supporting Caregivers
• 42:49 Final Advice and Takeaways

Transcript

Speaker 1: 0:10

Hello, 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 15 years. The mission of this podcast is to help as many people as possible living with Parkinson's to lead a great quality of life. Today, I'm blessed and honored to be recording my 100th podcast. I'm truly in awe of having the opportunity to connect with so many wonderful people living with Parkinson's who inspire me every day. I want to thank all of you that have listened and connected with me. Your support has helped keep me going and generating content that helps you live your best quality of life with Parkinson's. Over the last year and three quarters, I've been able to help other people with Parkinson's because you've tuned in and interacted with me.

Speaker 1: 0:57

Two years ago, with nudging from one of my guests on today's show, I began researching how to create and launch a podcast. I followed one of the quotes from a coffee mug that I received from one of my former managers that said life begins at the edge of your comfort zone by Neil Donald Walsh, and I really took that to heart and just threw caution to the wind and decided to launch the live Parkinson's live exceptional life podcast. Now my hope was that I could help a few people live a great quality of life with Parkinson's, thinking that maybe there would be a few people in the local area where I live that would listen. Little did I know that I would have a supportive community to continue to push me to create new content. So, from the bottom of my heart, I want to thank each and every one of you for tuning in on a weekly basis. Now my commitment to you is to strive to continue producing content that helps you live your best life with Parkinson's. Now I understand the daily struggles and challenges that we all face living with Parkinson's on a daily basis, but when we all stick together, share success stories and then just bond with others that are going through similar challenges Together, we're unstoppable if we stick together. Now I want to switch gears and talk about today's 100th episode and why I chose to have two special friends on, because not only have they been a tremendous help on my Parkinson's journey, but their expertise and experience is something that we can learn from so that we can live our best life with Parkinson's. So hopefully, after today's episode, you'll have some information that's actionable and you can use that to improve your life.

Speaker 1: 2:36

Now, I've always believed in divine intervention and sometimes people come into our lives when we need them most to teach us, to guide us and to have a positive impact on our lives. I've been fortunate to have two people come into my life who I consider dear friends and mentors. Now, I know we often think of mentors as people who are significantly older than we are, with more life experiences, but a lot of times when we have that mindset, we can limit ourselves to the impact people younger than we are can have on our lives. So, you see, it's not the age of the person that defines a good mentor, but it's the personal connection and the learning that you get from your mentor. So today I want to introduce you to two wonderful people who are my mentors and friends and have not only helped me to live my best life with Parkinson's, but have also touched the lives of others struggling with the daily challenges of Parkinson's and enabled them to live their best lives.

Speaker 1: 3:31

So let me introduce you to Susanna Gillespie and Megan Anderson. Susanna is the Vice President of Membership and Recreation at the Jewish Federation of Greater Harrisburg. She has a master's degree and is currently a doctoral candidate, with her research being conducted on female caregivers and the overall effect on their mental and physical wellness in people living with Parkinson's. Now she's a certified fitness trainer and co-developer of the Momentum and Punch programs for people living with Parkinson's, and she's been married to her husband, robert, for 22 years and has two children, ethan and Charlotte.

Speaker 1: 4:10

Megan is the fitness and wellness director at the Jewish Federation of Greater Harrisburg and she's a graduate of Albright College and is a certified fitness trainer and co-developer of the Punch program for Parkinson's and she leads on the intakes of new people to the program. She was a college lacrosse player and she still coaches for the local high school lacrosse team Now I've had the opportunity to know and work with both Susanna for about eight years and Megan for five years, through both group fitness classes and Parkinson's individualized trainings and mentor discussions, so I'd like to welcome both of them to the show. All right, I wanted to lead it off by asking you what initially sparked your interest in working specifically with people who have Parkinson's.

Speaker 2: 4:55

So I started working with people with Parkinson's back when I worked with the Momentum program. I was just a new personal trainer trying to get experience with all populations and Susanna was one of the people that persuaded me to start teaching a group fitness class, and it was specifically with this group. I had no idea what I was doing. I literally learned everything from Susanna, jen Shannon and the other instructors there to help me engage a class with this disease and after that I kind of fell in love with the program and the people.

Speaker 3: 5:30

I was part of. I was personal training at the time and I had gotten my degree in biology and then, when the opportunity came up where we wrote a grant to develop the Momentum program Pennsylvania is one of the leading states with individuals diagnosed with Parkinson's disease due to chemical and agricultural runoff, so it was a great opportunity to learn more about the condition. So that was really how I first got involved in it and then, working with that knowledge and being able to personal train individuals and then develop the actual classes, it was a great experience to be able to look at it from an individual and group mentality and then also to be able to help new instructors and new trainers come up through the program as well. That's really how I learned about it and fell in love with it.

Speaker 1: 6:18

That's great Thanks for sharing. So how has your understanding of Parkinson's and movement evolved over your years of experience?

Speaker 3: 6:26

I think for me, at first we were really looking at it from just the symptoms the motor symptoms and the cognitive symptoms and then, as we got deeper into learning about the individuals themselves, we realized the 360 degree effects of what Parkinson's meant with medication management, at-home life and long-term care, and how this really affected them on a day-to-day basis with their care partners, their families, transportation issues and all of the things that really went into what having Parkinson's meant and what that really meant for us as program developers and how we could best serve them for us as program developers and how we could best serve them.

Speaker 2: 7:08

Yeah, at first, understanding the basics and just the overlying blanket of symptoms of Parkinson's disease, I was able to start training my class the way that I thought was just like the blanket statement of everything. And then with, unfortunately, the progression of disease, some people have symptoms that are more severe. So I have to adjust the class or my one-on-one training. So my understanding of Parkinson's has grown because I realize it's not just XYZ symptoms. They can become like XYZ plus like a few more things that you haven't seen before and you have to adjust that way. So every day could be different for each class and each individual. Great.

Speaker 1: 7:47

Now, do you have a client? Or can you think of a moment over your years working with Parkinson's patients where you said to yourself geez, this is my calling. This is really. What I want to do is work with people with Parkinson's.

Speaker 3: 8:01

Well, I think for sure, Chris, you is one of them for me, and then we've had a couple others, definitely in the Momentum program, that have touched us. We've created really good relationships and seen firsthand what the interaction with their exercise and development has been able to do with slowing their progression. And I think one of the things that I always love to see is when they see themselves getting better and then, conversely, when they think they've been cured on some levels and they stop coming and then they realize that the exercise must be continual and then they stop coming, then all of a sudden they start coming back and we see the change and the symptoms have gotten worse and we can have those those really hard heart to heart conversations and then bring them back and they realize this is for the long run and we're going to be together in it for forever.

Speaker 2: 8:51

Yeah, there's a bunch of people I can think of, but one individual that really stuck with me was Dr Jay, who was a cardiologist, and he came into the program just very down on himself and him moving and just being able to say I can complete an hour class was just a big thing for him. And then he started the one-on-one training and we were working on functional movements just being able to get out of the car smoothly, getting up and down the stairs. When he did those one-on-one trainings he was able to say confidently that he was able to do these things better versus those who just don't take advantage of the one-on-one training. So individuals like that and seeing them just improve physically after those sessions was a big impact on me, great Thanks.

Speaker 1: 9:38

Well, as you can see, they both have a lot of experience dealing with Parkinson's patients and I've been fortunate to participate in two different programs. One was Momentum, and now they moved to Harrisburg and they started a program called Punch. Can you tell us a little bit about the Punch program and how you and we'll talk maybe in a minute about enrollment, but how does the Punch program help people with Parkinson's?

Speaker 3: 10:04

So Punch is a little bit different, where we've really combined a number of different formats. When we arrived, they were just using Rocksteady Boxing as a format twice a week, which is great. Rocksteady Boxing is a wonderful class. We came in and added in power moves, flexibility training, yoga, athletic movements. We've since added in pedaling for Parkinson's, which is a class that Chris and Brandon teach. We've also, through a grant, been able to offer move away PD, which is creative movement, and live music with a classically trained pianist. We've also been adding in art with our artists in residence. We're looking to add in even more with stretching classes. So again, being able to really attack Parkinson's from the total body and mind, being able to offer red light therapy now the assisted stretching, obviously personal training and being able to completely reimagine all of the things that we know everybody needs and being able to offer it to our participants and give them the absolute best outcomes we possibly can.

Speaker 1: 11:14

So I'm personally involved with the Punch Program as an instructor for Pedaling for Parkinson's, but also as a I don't want to say patient, but an enrollee, I guess I should say and it has benefited me. I've done several classes and it's helped me with my balance, my gait and a bunch of other things. But how do you incorporate balance, strength, flexibility, cognitive training into your sessions but still make it fun so that people actually want to come?

Speaker 2: 11:45

So I'm able to balance all those things by just gauging what the class is physically feeling and emotionally feeling, because I always ask them on a scale of one to 10, how they're feeling that day, because there's going to be some people who are feeling like a 10, they can tackle every exercise we're going to do. Then we have some individuals who feel like a two. So I always try to keep myself upbeat and encourage everyone to encourage each other. The participants are really good at keeping each other motivated in class and we're all sticking together making sure we're okay. I'm always playing fun music. We're either singing or dancing.

Speaker 2: 12:23

I make the stations work on different aspects, so a station is balance or flexibility, hand-eye coordination, some cognitive pieces. I do a lot of numbers with the class. We'll do some math and there's some times where even Susanna does this. We'll spell out words when we're doing power moves and that just gets your brain thinking and your muscles moving. So that mind body connection as well. One of the most important pieces that I try to throw out to everybody in class is the strength piece, because you need the muscle mass to help with appropriate reception of movement and that is just, I think, one of the biggest pieces for them, because when you're aging you are unfortunately losing muscle mass. So if you keep up with the strength program and you keep yourself motivated, find fun things out of it, you're still going to show up to class.

Speaker 1: 13:11

How do you do intakes? When someone calls up and says they want to be, you participate in the punch program. Are there certain tests that you do and how do you measure success?

Speaker 3: 13:24

Yeah, so when they call in and request some information, we've got a couple of different people that can answer a lot of the questions and then individuals will meet with either Megan or myself. We go through a pretty standard brief medical history. We find out when you were diagnosed, what symptoms you initially had, what symptoms you now have, what medications you're on. Then we run through a timed up and go walking backwards one foot balance, on and off the floor test. Those are also tests that we'll complete every three months and track your progress, and we can share those tests back with you so you can share those back with your neurologist or movement disorder specialist.

Speaker 3: 14:01

We also do some qualitative tests where we're asking you how you're feeling about starting the program, your faith that exercise can help you change, how you feel like your neurologist or movement disorder specialist is listening to and addressing your concerns, who you have as a care partner along the process, and we also ask these of your care partner if they're present too, because one of the things that I think we're both really passionate about is making sure that you are advocating for yourself, and if you're not advocating for yourself, we're making sure that we are the ones to empower you to do that, because Parkinson's is very serious and we want to make sure that you are taking the best care of yourself and that your care team is working as hard as you're going to be working in your class for yourself.

Speaker 3: 14:45

So you really have to know that your medical team works for you, and if they're not working for you, then it's time to fire them and move on to a care team that's going to be your biggest advocates, because your medicine has to work, your exercise has to work and your mind has to be in the right place. So we really try to assess that on your intake as part of the process.

Speaker 1: 15:07

Now one of the things that I've noticed being a part of both of the programs is just the camaraderie and almost a family type of setting. Would you agree that in terms of the punch program, that you see the same thing, that people connect because we share similar challenges and then even caregivers can get involved? But can you think of a success story from the punch program where someone started and they might not have had the confidence to think, oh, I can do this, and then now you've seen a vast improvement? Can you share a success story from someone in the program?

Speaker 2: 15:47

I actually recently talked to one of our participants is. I'll keep his name confidential, but he has been following more. He's super eager to do stuff, he wants to be able to do all the things and his mind goes a hundred miles per minute versus his body. His body's moving slower than it wants to and we've talked about him going to his doctor and asking for an ADHD diagnosis. It took weeks and weeks and weeks for him to realize like he actually needs to go, advocate for himself, and the other day he comes up to me and goes I got the diagnosis, I'm taking the medication, my mind's moving slower but my body's moving more intentionally because he would move again, like he would move so quick and his mind's quicker where he'll have this tendency to tumble and take falls, but he's one to always get back up and try again.

Speaker 2: 16:42

He's never down on himself Like he's funny when he falls because he's like I'm fine, I'm fine, I'm fine. But it's one of those things where, if you know your mind's going faster than your body, you got to be intentional with your movement. And the whole mind-body connection thing plays a big part, especially with the Parkinson's disease, because you need to be able to control your movements, taking deep breaths, stuff like that. But having this diagnosis for him to help him improve just slow him down and having more intentional movements is huge.

Speaker 3: 17:13

And.

Speaker 2: 17:13

I know who you're talking about.

Speaker 3: 17:14

So it's really important too, because we see these individuals multiple days each week and he's been doing a great job because he's been taking advantage of many of our different aspects of the program between classes and assisted stretching and red light and personal training. So we notice really great success when people interact with us on more than just classes but the additional services. But he's definitely one of the individuals where we notice when he's not there and other people in class notice when he's not there. So when I came in to teach class the one day, I said, hey, we're so-and-so, and people are like, oh yeah, he hasn't been here for a couple of days and so we were calling him and making sure that he's OK. So we are always looking out for each other, the class members are looking out for each other and the socialization is such a huge part of any Parkinson's program Because obviously there's tons of YouTube videos, there's tons of exercise programs that you could access over a video or a DVD.

Speaker 3: 18:11

But being together it helps to motivate you when you're having a bad day. You can help encourage others when you're having a great day. That really involves the mind and it gets your heart involved and with that emotion comes even greater success.

Speaker 1: 18:25

Great Thanks. Let's switch gears a little bit now, if we can, and talk a little bit about how exercise can really help your movement. And you know, I know a lot of people when they're first diagnosed, they think I don't want to exercise because it's going to make me tired, I'm going to be fatigued or I don't feel like it. But one thing I've learned over 15 years is that exercise is the key to helping you stay mobile, helping you continue to be able to participate in the things that you like to do. So, if we can, let's talk a little bit about what the research says on exercise and movement. Can you share a little bit of your experience, of what, maybe what you've seen?

Speaker 3: 19:06

So we definitely know the exercise, like Chris was saying, parkinson's just makes you want to slow down, makes you a little bit more apathetic to getting up and moving. So it is a huge challenge and you really have to kind of fake it till you make it. And we'll. We'll have this conversation with a lot of people, especially when those days when you're not feeling it and I tell people just promise, promise me, promise us that you're going to show up for five minutes. If you show up for five minutes you're probably going to stay for 10. And if you stay for 10, then 15 is not so hard and then by the end of it you're probably going to stay for that 50 minute class. So we know that exercise, just like our brains, is that muscle that has to come in and be stretched, be flexed and become permanent in your body. Our muscles also have that muscle memory and the more you do things, the more your body is actually going to crave the energy our flexibility to the flexibility builds. You can't just do work on flexibility one day and have those results last, because with Parkinson's we know the rigidity keeps on trying to attack and make you tighter and tighter and tighter, so you keep on having to work against it, to keep on, if nothing else, maintaining baseline. But to see improvements you're going to have to really work to fight after it. So the science is definitely showing that we have to be working on the exercise daily. We joke that it's the one drug that we can't overdose on. So the more exercise you do, the better, and we know we really have to diversify the exercise.

Speaker 3: 20:29

So it's not just one kind of exercise. We have to be doing balance exercise, things like Tai Chi, yoga. We need to be doing big athletic, explosive movements. We need to be doing big athletic, explosive movements. We need to be doing things that make our movements bigger. We need to be doing athletic drills. We need to be doing endurance work, strength work. You can't just do one. You have to do a little potpourri of everything and varying it throughout the day, and that actually works well, because there are some days that you're going to feel good and you're going to have a lot of energy. So you capitalize on that and do the harder things and on the days when you're not feeling as great, you can slow down and work on the less intense things, like the Tai Chi and the dance and the balance work and eventually, hopefully, it all evens out.

Speaker 2: 21:06

Yeah. So there was a research study done recently that plyometrics is huge for those with Parkinson's disease. So when I say plyometrics, it's like jumping and single leg work and that explosive piece, because it's working on that balance it. It makes it fun because you're not thinking like, oh, I'm doing this for balance reasons and whatnot. You're doing athletic movements that make you feel like good afterwards, like if you're able to jump on a, like on your foot, on your left foot, like one time, do two times, then three times, your confidence goes up and then you're coming to the next class saying, okay, what can I do today? Am I able to do five jumps today? Am I able to do a ski jump for 10 repetitions? Those endorphins that are going through your brain after exercise is what's going to keep you coming back and making yourself better, going to keep you coming back and making yourself better. So yeah, the research is showing so much how exercise really does improve the Parkinson's symptoms.

Speaker 1: 22:04

I know when a lot of people are diagnosed that they think I don't like going to a gym. I'm intimidated when I go to a gym. So how do you overcome that inertia to get people to say I can do this, I can come to the fitness center and I can work out with other people in it and not feel embarrassed? Because I know a lot of us living with Parkinson's. If you're having a tremor or your balance is off, a lot of times people don't want to go out in public because they they're self-conscious. So, and especially then to a gym, because there are people when you say, oh, let's go to the gym or the fitness center, they're thinking of these people lifting these big, heavy weights and they're thinking I can't do that. So do you have suggestions for on how to get people to become engaged in these programs?

Speaker 3: 22:52

I think one of the great things is just like when you want to go out to eat, you kind of think, what do I want to eat today? And if you want to eat Chinese food, you go to a Chinese food, you don't go to a Mexican restaurant. And, just like Chris is saying, you need to find the fitness center that's going to support your needs, and there are definitely certain gyms that are catering more towards a very heavy duty weightlifting crowd. There are gyms that are more catering towards, just like, a Pilates crowd. So you want to find a gym that's going to be catering and have specific programming to a Parkinson's crew. So I'd say, definitely Google things, look for reviews, reach out, talk to your neurologist a lot of them, and we've done a lot of effort to reach out to neurologists to make sure that they know what we're offering. Being able to find and talk to people that have some already good knowledge of what facilities have a good program is going to be key. And then, if you have other people maybe in a support group or maybe through the practices that you're going to that you can talk to in advance to say, hey, is this a good place, while I feel at home here. I think that really helps to speak to that as well. Go on a tour, find out, seek it out.

Speaker 3: 24:01

One thing that when the Jewish Federation where we are now it's the Simons Family Fitness Center is what the actual gym is called. When we moved locations last year into the new building, the actual Parkinson's program the punch program actually moved locations into a place that was a little bit more out in the open where it kind of had been off, into a side room, and one of the individuals came up to me. They was like well, how is this going to work? Like people are going to know I have Parkinson's. I first looked at him and I said well, they're only going to know you have Parkinson's a if you tell them. And I said, b, I think it's great, because then you're going to have a bunch.

Speaker 3: 24:33

And now nobody even mentions it. Because as soon as they walk in the door they know that everybody is there to support them and make sure that they're okay Extra sets of eyes and everybody is there to make sure they're having the absolute best experience. And now it's not even a thing. Now nobody even thinks twice about it. We have T-shirts that are made that say Punch Program on it, has a big fist on it, and they wear them with pride and so we have birch for them and it becomes a club and becomes part of their source of belonging, and it's not something ever to be ashamed of or to cower away from. It becomes something that makes them know that we love them, that they have a place and that their place is of huge importance to us and it's part of our mission.

Speaker 1: 25:17

Now one of the things I I've seen over the years, especially participating in a lot of the group Parkinson's fitness classes is people that think they can't do something.

Speaker 1: 25:27

And then when you give them that push or nudge and they actually they see that step change and all of a sudden their face lights up and they think, wow, I can do this. And you know, I've seen it multiple times where someone comes in and they're very, they're intimidated, or because they look at what other people in the group are doing and they and they and they're thinking to themselves I can't do that. When you, when you challenge them, then all of a sudden they start to realize that I can do this, and then you push them, then all of a sudden they start to realize that I can do this, and then you, you push them more and then pretty soon they're down the road a lot farther than they ever thought they would be. So can you talk a little bit about how you develop your program so that you push people to a point that they they're capable of doing it, but not going too far where it's going to cause some type of setback?

Speaker 2: 26:19

Yeah, one of the things I do in class is if we're doing multiple sets of an exercise, I will tell them to start off how they feel comfortable with If the squat is only knees at 90 degrees, it's knees at 90 degrees the last set. If they're feeling really good, they're warmed up. I'm like push yourself a little bit, try to sit down a little lower, try to jump a little further. It's all based on your comfortability, but I'm always going to be sitting there looking at you saying I know you can do more, let's do it. I'm going to be right there next to you and making sure you're okay. And once they're able to do let's say, squat down a little lower or take a lunge a little bit bigger they feel confident in themselves and then the next class they come in and they're doing that big step right away. It's just having that support system of one everybody and having us as instructors being there to motivate and push them. They find themselves progressing in the exercise versus regressing find themselves progressing in the exercise versus regressing.

Speaker 1: 27:23

One of the things that I've learned from both of you is incorporating multiple types of exercises into one exercise, so doing cognitive balance, strength, and it might all be incorporated into one exercise. So can you, if you had three exercises, or could you, give us three exercises that you might be able to incorporate a strength, a balance and a cognitive exercise so that people that aren't fortunate enough to have a program in their area might be able to do at home after they get approval from their doctor?

Speaker 3: 27:51

One of my classic ones that I love, and you can kind of titrate this one to your ability. If you're sitting on a chair and if you were to have a pillow at home, you could put one pillow under one foot and your other foot's on the floor and you can do your squat sit to stand that way. So one foot on the pillow, one foot on the floor. Stand up. When your foot is on the pillow you have a little bit more of a balance challenge because your foot is interacting with the pillow a much different way than your foot is interacting with the floor. So already your foot is a little bit different. You've got the balance challenge.

Speaker 3: 28:23

Every time you stand up and sit down, I want you to spell a word and then you want to spell it backwards. So by how long that word is? It's going to change how complicated that cognitive challenge is. Then, if you're feeling even better about how you're standing up and sitting down, take the pillow away and just be on tiptoes on the one foot. So the ball of your foot is down, the heel of your foot is up. Stand up, sit down. If that still feels good. When you stand up, lift your knee up and balance on one foot. Put the foot down, sit down and keep on doing that, either with saying words forwards and backwards, or counting forwards and backwards. Skip counting. Counting by fractions. Counting by fractions is probably one of our most hated activities in class, but also then probably one of the ones that we all need to work on the most, because it is so tricky. And if it's tricky, that means it's working. Our brain and a lot of different neurons are firing.

Speaker 2: 29:14

One of the drills I do in class I have these colored dots. They're like rubber dots that stick to the floor. At home you can take different colored painter's tape and just tape them around in a circle. So there's like I have a red dot, blue dot, orange dot, green dot, like the rainbow, and what I do is I write a pattern of the color. So you have to lunge to red, lunge to green, lunge to purple. You have to do that both with the left and right foot. That's challenging you to one work on your lunge, have that weight shift and balance piece and you're also cognitively trying to memorize that pattern. So once you're comfortable with a three color pattern, go up to four. If you're comfortable with four, go up to five and that will help also with the repetitions and just working on that strength, that single leg strength and that weight shift.

Speaker 1: 30:03

Just as a personal example, one of the ones that always sticks in my head is I was training with Susanna and she had me stand on a Bosu ball and hold a kettlebell and then I had to say the states in alphabetical order and went through that one and I thought, oh, I'm done with that. And then she said, okay, well, now let's do all the state capitals in alphabetical order. So I think she was trying to kill me that day. But no, just seriously. But it really did. It was a challenge. I couldn't even do that one. I was impressed that you could. So I felt so much. I mean, it was like, wow, I could actually do that.

Speaker 1: 30:42

So a lot of times we think that we can't do something, but when someone's there to push you, you'd be surprised at the things that you can achieve, and that's one of the reasons that I highly suggest. If you can get into group fitness classes whether it's a Parkinson's class or not you're going to see great improvement and they can always modify things to make it so that you can participate. So don't ever feel like you can't participate in any type of class. You tell the instructor that you need some modifications and they're always happy to help you out. So that was one of the ones that really stuck in my mind over the last couple of years. And then the other one was Megan had us walking on there's these plastic rocks and we would have to walk on and then skip to different colors and say different and maybe come up with a fruit or something at the same time. So it's definitely great to incorporate a lot of different exercises into one type of activity, but again, you always want to make sure that you get clearance from your doctor first and let them know what type of exercise program that you're participating in.

Speaker 1: 31:44

All right, so let's change course again, and I want to talk a little bit about mentorship, and I mentioned at the beginning that a lot of times we think that, oh well, a mentor has to be someone that has more life experience or is older than you. But both Megan and Susanna are my mentors and they're great at helping me with questions that I have and just giving me overall guidance. So again I want to ask both of you what's it been like working with me over the years and how have you seen me grow and improve or adapt?

Speaker 3: 32:19

It's always been a joy to work with Chris because Chris has always attacked everything I think that we've ever given him to work on. I always laugh because he gets up early and he's always accomplished about 17 things before, I think, I've even started my day, so that's always been impressive. But he takes everything and he works really, really hard at things about 17 things before, I think, I've even started my day, so that's always been impressive. But he takes everything and he works really, really hard at things. We all have our ups and downs and he's had moments where he feels like he needs a new challenge, and he needed a new challenge and I said, hey, why don't you share your knowledge? Because he has a lot of great knowledge from his education and his work experience, and so I loved it that he had written his book and he's working through this podcast and now impacting people all over the world and hundreds of countries and hundreds of cities.

Speaker 3: 33:04

And whenever I think the thing that I think we've both noticed whenever we've had individuals that start the program and are unsure or don't have a lot of self-belief that they can either do it or be a part of something where other people are around, we'll just ask them like hey, can you talk to this person? And without a doubt he's. You know, he's like yep, give me their name and he goes and talks to them. And people that don't think that they can do it, after talking to Chris for you know, 15 minutes all of a sudden really see belief in their own ability to do something, and it's been wonderful to see him step into those roles and share not only his ability but his faith in others, and he, I know, also believes in the two of us a whole lot, which has helped us in so many ways through over the course of years. So just being able to share our love and our ability to try to help as many people as we can through this process has been great.

Speaker 2: 33:58

Yeah, working with Chris has been amazing. He is a motivator for me but also a motivator for all the people he's touched in his life, like the momentum program. I just remember you being in class and just motivating those who are still just a little shy, a little timid of pushing themselves out of their comfort zone. And even with the punch program, with starting move away, pd, you stepped in and you took the class and you told everyone about it and everyone followed you after. So people really do trust you and they listen to you, which is amazing.

Speaker 1: 34:29

Well, thanks. What recommendations would you have for people that are newly diagnosed? Then I mean, because it's it's really's really a shocking thing when your doctor tells you, oh, you have Parkinson's disease, and you're thinking, oh great, what do I do next? Where do I go? So what type of recommendations would you have for people that are newly?

Speaker 3: 34:47

diagnosed is either we found from talking with a lot of our participants is they feel like they've been left with the diagnosis and not a lot of direction from their doctor or provider, whoever that may be or they're told they need to do a lot of things, but then they don't know where to start. They're overwhelmed, they're scared, they feel like they have a huge new mountain to climb and they have no direction. Other countries have a much more organized system and a much more unified system to say this is what you need to do, here's the phone number, here's the times that you show up X, y and Z and it's all laid out for you. So I think really either being very upfront with your doctor about either concerns, fears, questions and really kind of planting yourself in the chair and being the squeaky wheel to find out exactly what you feel like you need to know, because, especially with a diagnosis as big as this, you have a lot of questions and don't rely on Dr Google to try to solve all those problems for you, because there's way too much information, a lot of it's conflicting. You don't know exactly who you can trust at this point and you really need to talk with your local providers to be able to find out, especially in your area, where you can go for your next steps and then start talking to other people. Get involved in a support group, because a lot of them have already tried different programs, reached out for other supports and have either found the good ones or found the ones that may not feel like there is quality, and so save yourself a lot of that legwork and then reach out to your local gyms and find out who is offering programs and then just try Talk to them. Within a few minutes of asking some questions, you'll find out A who has a lot of knowledge on the subjects, who's really invested in it. People, I think, come away from us and they tell us that they're like wow, you guys really, really care, you guys have really developed a really comprehensive program and you're really doing this for us.

Speaker 3: 37:01

One thing that I'm incredibly, incredibly proud of is the fact that you don't have to pay extra to be part of our program. It's all included in membership. We know your medications are incredibly expensive. We know your doctor's copays are incredibly expensive. We know your doctor's co-pays are incredibly expensive, and the biggest barrier to entry for you should not be a gym membership or program participation fees. We want you to be here and we want you to be here as frequently as possible, so we want to. We want this to be an easy yes for you and for us. To be able to have support groups, art programs, music, six day a week, fitness and all the other holistic opportunities for you right in one place should make it an easy yes, and we have the scientific and the physical fitness and all of that knowledge in one place, and if we could replicate this across the country, that would be my dream to be able to have that be easy for everybody who gets that diagnosis.

Speaker 1: 38:00

What role would you say community plays in the whole process? In terms of a person's been diagnosed with Parkinson's, how important is it for them to stay engaged and join groups like the Punch Program? But if they don't happen to have one in their area, do you have suggestions for people based on your experience working but with both of these groups, that they can join to stay engaged?

Speaker 2: 38:24

Yeah, the sense of community and just like that sense of friendship, because you guys are all going through the same diagnosis. Everybody is in a different stage of it, but having everybody show up to class and know like you're here for a reason, I'm here for the same thing, let's do this. It's a very motivating mindset. And then you create these close-knit friend groups where you might go out for lunch, you might take you and your loved one out to a hike or a little event. It's this great collaborative community where you can do more than just the exercise hike or a little event. It's this great collaborative community where you can do more than just the exercise programs or the support groups in, like our facility itself. You can take these friendships outside.

Speaker 1: 39:04

And just from a from personal experience participating in both groups that we've actually it's you know really become a family and we've expanded beyond just the group fitness class we do.

Speaker 1: 39:14

We get together weekly for pickleball, we started a walking group. One of the people in the punch program I went fly fishing with because we've developed a good friendship, and then I'm going out to Denver for the peddling for Parkinson's workshop through the Davis Finney foundation and Brandon, who's the other instructor that I was fortunate enough to meet in the Parkinson's class, is going with me. So it's really been a family type of atmosphere, and so one of the things that I would recommend is that if you're diagnosed with Parkinson's is stay engaged and continue to do the hobbies and activities that you love to do, but try to find other people with Parkinson's, and you'll find that a lot of times you have similar interest in. You know it'll go beyond just a class and you might find yourself going out and doing things outside of class. As we wind up here, I just wanted to get some practical wisdom from both of you. If you could give someone three exercises that you would recommend that they do on a regular basis to help them on their Parkinson's journey. What would it be?

Speaker 2: 40:17

Mine would be a sit to stand, squat kind of motion practices with stepping up on like your staircase to help mimic getting up on curves and getting in and out of the car, and another one would be just reaching up like a push press kind of motion, shoulder press kind of motion. That will help you continue being able to reach up something for like a glass in your cabinet or putting away dishes, stuff like that.

Speaker 3: 40:46

All right, I love Megs and I'm not going to steal hers. So I'm going to go a completely opposite direction and I'm going to say an everyday practice of gratitude to focus on all the good things that are still going on in life Every day. Work on your flexibility because again Parkinson's is trying to steal it, so you have to work on it. And if you have a care partner in your life, take at least a one-day vacation from your Parkinson's with that care partner every single week and just don't even talk about it and just be a couple again. Go on a date, do things and just don't even talk about Parkinson's.

Speaker 1: 41:25

All right. So we've talked about people with Parkinson's. I think sometimes we I don't want to say neglect, but a lot of times in the shadow is the caregiver. I don't want to say neglect, but a lot of times in the shadow is the caregiver. So what advice would you have for families, family members and caregivers in terms of helping someone on their Parkinson's journey but then also being able to take care of their own personal needs?

Speaker 3: 41:49

So I just completed my interviews for my research candidates and it's been a very interesting process to learn from a lot of wonderful women across the country. What their expectations were are what their needs are, and I think one of the biggest things is, if you're a family member and maybe not necessarily a care partner, don't wait for somebody to ask for help. Just say give me a list of things that you need. Take on automatically grocery shopping for these families, lawn mowing, house cleaning, the boring stuff that we ourselves don't want to do for our own selves, but all the things that just take up time, because there's so much that goes into being somebody with Parkinson's and being that care partner that they are exhausted and they just need help. And when they have downtime, their downtime should not be laundry and grocery shopping and all of those things.

Speaker 3: 42:50

The thing that keeps on popping up time after time when I ask them questions is this is not how I expected life to be.

Speaker 3: 42:56

This is not how I expected retirement to be. So if there's any way that you can help them with having something fun helping promote something fun in their day or helping them if they want to go on a trip and help facilitate that I know that's a bigger ask, but helping them to either go on hikes or things that they enjoy already, and just asking, even just making phone calls. We were talking about trying to find these good programs out there. Be like, I'm going to make phone calls for you. Who can I make phone calls for? Do the research online, because that stuff takes time and it doesn't seem like it's a big deal, but it's a huge deal. And if you were the one that researched all those phone numbers or made all those phone calls and found out that the Y has a program on this day and it costs this much to attend, and the J has a program on these days or this martial arts studio is offering this class on these days, put it all together, write it all up, email it to them that would be humongous.

Speaker 1: 43:48

All right, as we wrap up, I have one more question for you. If you dig deep into the recesses of your brains, working with Parkinson's patients and families, what's one piece of advice that you would think is most important that people could walk away with and use as an action step if they've been diagnosed with Parkinson's? Whether it's for the patient or the family, or both?

Speaker 3: 44:13

Keep a symptom tracker. Chris has a great one on his website, livesatparkinsonscom. Do it every single day, whether you think it's helpful or not, because even the good days are good to track, because then we know it's working. I think that's one of the biggest things Show up for yourself every day, show up for your family every day, making sure that you trust the process. So if you have industry experts like Megan and myself telling you you need to do this, do this.

Speaker 3: 44:44

We're not telling you because we're trying to convince you to do something that we don't think is helpful. We do it because we have worked with hundreds of people and we know what the outcomes are going to be if you do it and again, sometimes you have to fake it till you make it. And if you're feeling crappy someday, you still show up. And even if you give 10% of your best effort, it's still going to be better than if you didn't show up, because the act of showing up and continuing that routine is the single most important thing you can do to keep yourself going, because once you stop, it's so much harder to get back on and start up again.

Speaker 2: 45:20

Yeah, continue doing what you love, keep pushing yourself, whether it's joining a new exercise group or finding a new support group, because you living inside your own head and as soon as you start having those negative thoughts it's really hard to get out of. So continue doing what you love, continue finding those support groups. Exercise those endorphins are so good for you.

Speaker 1: 45:42

Well, I want to thank Susanna and Megan for being on the podcast today and, to build on what they said, I highly recommend that you find a mentor if you can, because they push you, they challenge you and they get the best out of you, and they've both been wonderful in helping me on my Parkinson's journey and I you know I'm very fortunate and very grateful. So thanks again for listening and, before we leave, if you go to visit liveparkinsonscom and subscribe to the free monthly newsletter, theparkinsonscom and subscribe to the free monthly newsletter, there's a lot of information in there that you can use on a daily basis and actionable information as well, including upcoming webinars from some of the big foundations. And then I want to thank you again. Thank you for listening and, as always, stay healthy, stay strong, keep a positive attitude and live your best life with Parkinson's. Thanks again.