Live Parkinson's - Live an Exceptional Life!
Live Parkinson's - Live an Exceptional Life
Discover hope, resilience, and practical tools for living an exceptional life with Parkinson’s. Hosted by Chris Kustanbauter, this podcast is dedicated to empowering those with Parkinson’s to take charge of their lives and thrive through a holistic approach.
Each week, tune in for expert interviews, personal stories, and actionable tips covering exercise, nutrition, optimism, and social connection – all proven to improve quality of life. From managing symptoms to staying active and building meaningful relationships, this podcast will equip you with tools and insights to navigate life confidently and positively.
Whether you’re newly diagnosed, a seasoned warrior, or a caregiver, Live Parkinson’s, Live an Exceptional Life brings you evidence-based strategies and inspiring stories to help you overcome challenges and stay motivated on your journey. Let’s embrace each day with strength, laughter, and community – and live life on your terms.
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Live Parkinson's - Live an Exceptional Life!
Sweat, Science, and Synergy: The Ultimate Parkinson’s Exercise Blueprint
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Can exercise actually slow Parkinson's disease progression? In this episode, we break down the game-changing clinical findings from the landmark CYCLE-II trial and the newly updated joint guidelines from the Parkinson’s Foundation and the American College of Sports Medicine (ACSM).
Discover how to shift exercise from a simple lifestyle habit into a targeted, disease-modifying prescription. We explore the science of high-cadence cycling (> 75 RPMs), the four pillars of Parkinson's fitness (Aerobic, Strength, Flexibility, and BAM), and how to safely weave activities like indoor spin, boxing, swimming, dumbbell and machine workouts, daily stretching, and dual-tasking balance drills into your weekly routine.
What You Will Learn in This Episode:
- The CYCLE-II Trial Data: Objective details on participant numbers, study duration, and how high-intensity aerobic exercise impacts motor symptom progression.
- The Four Pillars of Movement: Practical ways to structure your weekly routine using the latest ACSM and Parkinson's Foundation recommendations.
- Advanced Actionable Strategies: How to use the "ON-Time" medication rule, master the Rate of Perceived Exertion (RPE) scale, and stack cognitive drills to supercharge neuroplasticity.
Resources & Links Mentioned:
- Read the study breakdown via the CYCLE-II Trial Overview on PubMed and the Movement Disorders Society Release.
- Review the official guidelines via the Parkinson's Foundation Official Exercise Guidelines PDF.
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- ⚖️ Free Balance Resource: Grab your free copy of 9 Balance Exercises to Help Improve Balance in Parkinson's to add stability and agility to your daily routine!
Medical Disclaimer:
Disclaimer: The content provided on the Live Parkinson’s Podcast is for informational and educational purposes only and does not constitute medical advice. Always consult with your physician, neurologist, or healthcare professional prior to initiating any new exercise program, diet, or lifestyle change to ensure it is safe and appropriate for your specific health needs. Always work with a certified fitness professional or licensed physical therapist specializing in Parkinson’s care to help design and execute your approved exercise plan safely.
Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
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Welcome And Why Sweat Matters
SPEAKER_00Hello and welcome to Live Parkinson's, live an exceptional life. I'm your host, Chris Custombot, 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 we're going to be talking about a four-letter word that might just be the most powerful medicine in your cabinet. No, it's not a pill. It's sweat. That's right, sweat, which I also like to call fat crying. Now I know what some of you are thinking, oh great, another podcast telling me I just need to stay active or go take a gentle walk around the block. Well, throw that thought right out the window because today we're breaking down the brand new game-changing joint guidelines released by the Parkinson's Foundation and the American College of Sports Medicine, alongside some heavy-hitting clinical data from landmark trials like the Cycle II study. Now we aren't just talking about general fitness anymore. We're talking about precision exercise prescriptions. So before we dive into this the science and some actionable strategies, I just have this brief disclaimer that before starting any new exercise program, seek approval from your healthcare professional to make sure that it's appropriate for your specific health needs. And then once approved, find either a certified physical therapist or a certified physical trainer that have worked with Parkinson's patients to help you design a program that is appropriate
The Cycle II Trial Explained
SPEAKER_00for you. Let's take a look under the hood of the clinical data. So for a long time, researchers knew that exercise made people feel better. I know I feel better when I exercise, and my friends and the Parkinson's classes that I take also seem to feel better when they're done exercising. But they couldn't definitely prove that there was fundamental changes in the disease timeline because of exercise. Well, then came the cycle two trial, which is called the pragmatic cyclical lower extremity exercise trial, and that's a mouthful. Now, this was a massive multi-site randomized controlled trial specifically designed to test whether long-term, high-intensity aerobic exercise could act as a disease modifying tool. Now the study enrolled 256 people with mild to moderate Parkinson's across several major academic medical centers. Now the objective was to evaluate whether a structured 12-month aerobic cycling program could slow down the progression of motor disability compared to standard, usual, and customary care. Meaning you go to see your neurologist or movement disorder specialist and they prescribe you some medications and maybe tell you what to do, and then that you follow their care plan. Now the participants in the active arm of the study were given a home-based stationary cycle and asked to complete a 45-minute session three times per week. Now, importantly, they utilized virtual coaching and community support to maintain a high cadence, specifically targeting greater than or equal to 75 revolutions per minute. So when they were doing their cycling, they maintained that greater than or equal to 75 RPMs for the 45-minute session, keeping their heart rates in that vigorous zone, which is roughly 60 to 80 percent of their heart rate reserve. Now the findings that were presented by the lead investigator, Dr. Daniel Korkos and his team, were somewhat staggering.
What The Results Really Show
SPEAKER_00After 12 months, the control group progressed as expected by natural history. So someone with mild to moderate Parkinson's after a year, typically there's a progression. Those people typically progressed and on that natural progression. While the high intensity cycle group demonstrated a significantly lower rate of motor symptom progression. So that group, their rate of motor symptom progression slowed. But even better, adherence was phenomenal. 93% of the people adhered to the program, proving that patients can and will stick to a rigorous program when given the right tools. Whether it's a personal coach and then doing something as a community, but they're given ways that they can follow specific instructions to keep their heart rate in a targeted zone. All right, now that trial forms the backbone of the newly updated Parkinson's Foundation and the American College of Sports Medicine Exercise Guidelines.
The New 150-Minute Weekly Target
SPEAKER_00Now the organization's teamed up to synthesize everything we need to know into an actionable multi-domain framework targeting 150 minutes of moderate to vigorous physical exercise or activity per week. Now you may be thinking to yourself, 150 minutes, you have got to be kidding me. Well, you don't have to do all the chunks at one time. Based on your where you're at in your Parkinson's journey, if you can only do 15 minutes now, try to do 15 minutes now, 15 minutes at lunchtime, 15 minutes maybe later in the afternoon. So as long as you're getting a total of 150 minutes per week, that's what's important. It doesn't, you don't have to do these big blocks of, oh, I've got to do 45 minutes or I got to do a half an hour here or an hour here. Just make sure that you get a total of 150 minutes of moderate to vigorous physical exercise every week. So let's actually break down what this actually looks like in practice across the four explicit pillars using, and then I'll give you some real-world examples.
Four Pillars Of Parkinson’s Exercise
SPEAKER_00All right, the first pillar is aerobic activity, and you want to try to do this at least three times a week. So, what is aerobic activity? Well, that's moderate walking, fast walking, spin class, riding your cycle, boxing, swimming, dancing, anything that you're getting your heart rate up and your breathing increasing for an extended period of time, that's going to help with your cardiovascular system. So these workouts are designed to push your cardiovascular system and help you keep a high cadence so that you can directly mirror some of the protocols that were done in some of these clinical trials that were proven effective. Now, in terms of aerobic activity, just to give you some examples, from my personal perspective, I typically do aerobic activity at least five times a week. And I typically do a spin class three times a week, typically Monday, Wednesday, Friday. And then, and then on one day I teach a boxing class, and then I'll also swim or take a deep water exercise class Tuesday, Thursday, and Saturday. So usually five to six days a week with that aerobic activity myself. I have some friends that do boxing class, they take a Parkinson's exercise class and they do some spin. So all those would consider aerobic activity. Maybe you like to dance, Zumba or Tango, those are all great options as well. All right, number two is strength training. Now you want to do this on two to three non-consecutive days a week, meaning you don't want to lift Monday, Tuesday, Wednesday. You want to do Monday, Wednesday, Friday, or Tuesday, Thursday, Saturday, whatever it happens to be. And you want to use utilize a mix of dumbbells. It doesn't have to be heavy dumbbells. You don't have to go to the gym and go, oh my gosh, I can't go in there. Look at how much weight those people are lifting. You can use light dumbbells, you can use gym machines. Like there's a lot of machines for doing lap pull downs or rows or those type of things. We're also working your legs. There's leg extension, leg curl machines, and then resistance bands. If you don't want to use dumbbells or you don't want to use gym machines, you can use resistance bands. They're anything that is going to fight against your muscles, and you want to target major upper and lower body muscle groups. So things like squats. So you can do chair squats. And then also you can do body weight exercises. If you don't want to do resistance bands, you don't want to do any of that. Chair squats, wall push-ups, all those types of things where you're using your body weight is going to help you. So the goal is to lift a comfortable weight for proper repetitions, and you eventually want to progress to set that challenge your muscles and are going to build that strong foundation for your core, your legs, and your back. So that it's going to help you with your movement, it's going to help you with your balance, and it's going to help you with your core and flexibility. So, in terms of strength training, I do a mix of dumbbells, free weights, resistance bands, and I also do some body weight exercises. I'll do squats, lunges to work on my lower legs. Next up is flexibility and range of motion, and they recommend practicing this daily. And they recommend dedicated, solid 15 minutes of daily stretching that incorporates dynamic movements before you do an activity, and then static holds. So you would what that means is after you're done doing an activity, you stretch and hold it for 10 to 15 seconds. And then afterwards, you that's going to help counter rigidity. Now, in terms of flexibility and range of motion, I typically do stretching every morning. I usually get up, I'll do arm circles, I'll reach my I'll stretch my shoulders by reaching across my body. And then so I'll stretch my shoulders and my arms, then I'll do some light twist for my core, and then I'll stretch my hamstrings, my calves, my quad muscles, and then I also stretch the glute muscles to try to stay as flexible as I can because when I'm more flexible, I can make changes if I have to quickly in terms of turning. I don't feel and I don't feel as rigid and stiff when I move around. So by practicing on a daily basis, as I mentioned before, the more you do it, the better you get at it. And so your muscles become more flexible if you if you're stretching them every day. And then number four is balance, agility, and multitasking. And they recommend two to three days per week. Now, me personally, I like to do balance exercises on a daily basis because the more I do them, the better my balance is, because I'm repetition, repetition, and then that that's really that helps me with my balance. But they go one step further by stressing that you need to incorporate multitasking drills. So that would include things like are saying the months of the year backwards, counting by threes to 30, spelling words forward and backwards, naming fruits and vegetables that are yellow or orange, those type of things. Because in in your daily life, you're doing two things at one time. So when you're doing multitasking skills, you're carrying groceries and talking at the same time, or you're carrying a laundry basket in while you're talking or thinking about something else. So you want to be able to challenge yourself physically as well as mentally at the same time. Now, if you're interested in balance exercises, if you go to libparkinsons.com, I have nine balance exercises that help to improve your balance in Parkinson's. And these are some of the ones that I do myself. And I do them like, as I said, on a daily basis, along with making sure that I include multitasking in there. So I try to mix it up every day. One day it's spelling words forward and backwards. The next day I might name cities in alphabetical order or things like that, states in alphabetical order. Now, all that's nice. We have all these guidelines. Now let's translate these four pillars from the guidelines into your weekly calendar.
Three Strategies To Make It Work
SPEAKER_00So, how do we take these clinical guidelines and use them in a safe and effective manner? So, how can you apply these into your daily life? So, here are three strategies that you can use that you can implement immediately to help you as part of the as part of getting your 150 minutes of exercise across aerobic exercise, strength training, flexibility and stretching, and balance. All right, action strategy number one is the on-time execution rule. Now, what does that mean? Well, according to the Parkinson's Foundation and the ACSM guidelines, you should aim to schedule your intense exercise sessions like your spin class, your boxing, your swimming, or any heavy strength training during your on medication periods. Now, why do we want to do that? Well, when your medication is fully optimized, your motor control and your coordination is going to be at its peak, and that's going to help you dramatically reduce your risk of falls, and it's also going to help you hit that target intensity safely. So typically what I do is I get up in the morning, I take my medication, and then once I feel like I'm in the on state, that's when I go and do my spin class or boxing or swimming, or if I'm going to be lifting a little bit heavier weights, which I typically don't do a whole lot of anymore, but I'm at my peak because I can exercise harder and longer because I'm on versus being in the off state. So that's rule number one, the on-time execution rule. Strategy number two is using a perceived rate of exertion scale, because a lot of Parkinson's medications and some of the autonomic changes that we go through can cause your heart rate response to maybe not measure properly on a heart rate monitor and might not even cause it to spike. Now, I typically use an Apple Watch to monitor my heart rate, but when I don't have that on, I typically use what they call a rate of perceived exertion. And that's essentially it's a 10-point scale. And where 10 being you're breathing so heavy and your heart rate's up that you you can't really do anything else. And then one would be just like a nice little general stroll around the neighborhood where you're not really getting your heart rate and your breathing up. So typically where you want to be is at around a five or six. So if you're doing like boxing or cycling or swimming, a five or six is where you're breathing heavily, you're breaking a sweat, but you're still able to speak in short sentences. So you don't want to get to the point where you're breathing so heavily that you can't even, you know, respond to somebody. So if you're in a cycle class, you should be able to be sweating, breathing heavily, but you should still be able to look and talk to the person next to you in short sentences. That'll that make sure that you're right where you need to be in that target heart rate zone for neuroprotection. So that's number two, the rate of perceived exertion scale. Remember, try to keep that in five or six. And then number three is stack your balance and multitasking drills. So the days you do your balance, whether it's three times a week, twice a week, whatever it happens to be, you want to supercharge those days by incorporating in multitasking drills. So again, that's spelling words forward and backwards, naming the states in alphabetical order. Another thing you can do is either bounce a ball and catch it or toss a ball in the air, where you're doing you're forcing your brain to do two different things at one time. And that's gonna help create those new neural pathways, which we call neuroplasticity. But when you do those, it's really gonna help your balance because think about it. Every day in our daily lives, we're doing more than one thing at a time. We're not just walking. Usually someone's asking us questions or we're we're carrying something, carrying groceries or carrying dinner to the table, whatever it happens to be. So make sure you practice balance and multitasking drills as much as possible because the more you do it, the better you're gonna get at it.
PT Programs And Long-Term Tracking
SPEAKER_00All right, now before starting any new high-intensity program, remember ask your doctor and then maybe ask if you can partner with a licensed physical therapist that holds some specialized training in Parkinson's because they can get you involved in a couple different certified programs like the power moves. I've done these as part of the momentum program where there's four or five different power moves that we do to work on making sure that you open up, you can uh make multi-directional changes by twisting. And then the other one is the LSVT big program. And I've done that one as well with the help of a physical therapist, and it really helps. It helps with your balance, it helps with your movement, it helps stay open. So both of these programs are great programs. So that they're two programs that you might want to ask your healthcare professional about. And then they can also run a baseline evaluation every six months to make changes based on how you're doing. Now remember, exercise isn't just a nice supplementary checklist, it's a vital, non-negotiable pillar of your treatment plan. So think of it this way: you take your medication on a daily basis to stay on. Exercise should be just as part of your treatment plan as your as your medication. Because remember, you got more control over your Parkinson's trajectory and your Parkinson's journey than you think. Because every single step you take, every pedal stroke that you do on a spin class, every punch you throw in a boxing class, or every lap you swim is going to be an investment in your independence. So I want to thank you for hanging
The Nonnegotiable Mindset And Closing
SPEAKER_00out with me today. Now, if you found this valuable, please share it with a friend or care partner who needs to hear it. And please visit LibParkinsons.com and sign up for the free monthly newsletter. And also there you can find the nine balance exercises to help improve your balance with Parkinson's. So until next time, stay strong, stay healthy, keep moving, and go out there and live your best life with Parkinson's. And I will see you soon. Thanks.
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