Boxing and other activities help people with Parkinson's

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. Empower Parkinson, Inc. is the charity that was selected by Upstate this year to receive volunteer support and up to $5,000 in funding through 2024. Today I am talking with Julie Lombardi. She's a doctor of physical therapy from Upstate who's also a board member of Empower Parkinson. Welcome back to "The Informed Patient," Dr. Lombardi.

[00:00:34] Julie Lombardi, DPT: Thank you. Thank you for inviting me.

[00:00:36] Host Amber Smith: Would you start by telling us what Empower Parkinson is?

[00:00:40] Julie Lombardi, DPT: Sure. Empower Parkinson is an organization that's local to our community. It was originally started in about 2017. It started as just a class, a boxing class, for people with Parkinson's. We started this off very slowly, about 10 participants at the time, after the founder of this went and got training in a specific type of non-contact boxing for Parkinson's called Rock Steady Boxing.

And so this program started out slowly for about a year and then started to grow and then eventually needed new space. And as it grew into new space, there were more programs added besides boxing. And so there needed to be a new kind of umbrella term for this organization, which is where Empower Parkinson came from.

Really the whole goal of the organization is to empower people with Parkinson's and those that love them, so their caregivers.

[00:01:39] Host Amber Smith: So did it start in a boxing gym?

[00:01:42] Julie Lombardi, DPT: No. It started in an outpatient PT (physical therapy) practice.

[00:01:46] Host Amber Smith: Oh, OK.

[00:01:46] Julie Lombardi, DPT: It did move into a boxing gym at one point. And what's funny about that is when it had to move out of the PT practice because the space was being closed, we went around looking for a new space, and my personal opinion was like, "our boxers are not going to want to be here in this gym. You know, it's so, like, hardcore, these boxing gyms." But they actually loved it. They loved the idea of walking in and seeing a ring and seeing all the heavy bags and all the speed bags. And it was a lot of fun to be there.

It has moved again since then and is in another boxing gym, a larger boxing gym. And that has allowed us to, again, expand what other programs are within the space since it's bigger.

[00:02:27] Host Amber Smith: Now you said Rock Steady Boxing. Is that a different type of boxing?

[00:02:32] Julie Lombardi, DPT: Rock Steady Boxing is an organization that started in Indianapolis. It was a boxing gym that some of the boxers there started working with people that had Parkinson's and realized how effective it was in improving their symptoms. So they then went on to learn more about Parkinson's disease and work with medical providers to learn more and develop it into, it's a class that is not specifically only boxing during the class -- it's about an hour long -- there are other components to it, so it's like a circuit type class. It includes a lot of boxing within it, but it also includes other activities that may not be in a typical boxing program. So it's a non-contact boxing program specifically for people with Parkinson's disease because it targets their symptoms.

[00:03:21] Host Amber Smith: Well, at this point in our community, how many people are involved with this?

[00:03:27] Julie Lombardi, DPT: So the Empower Parkinson program has 150 participants in it at this time. There's about 125 of them that take part in the boxing classes, and then the other 25 are involved in some of the other classes.

Some of those other classes are -- there's so many -- there's spin, so it's like a cycling for Parkinson's. There's nutrition classes, which this is a really cool concept. There's classes where a registered dietician comes in and teaches people how to cook and make meals that are nutritious and kind of brain healthy. There's also pole walking classes that occur in the park during the appropriate months, and yoga and tai chi and singing. And one of the newer classes that's available is this form of martial arts called Aikido, and they're teaching participants how to fall safely, which I am just so excited about that class.

So there's a lot of programming within Empower Parkinson for people that have different things that they enjoy as well as just to fit their different needs to meet them where they're at.

[00:04:33] Host Amber Smith: What's the typical age of a participant?

[00:04:37] Julie Lombardi, DPT: They have participants probably as young as 40 and up to, I would imagine, into their late 80s, maybe early 90s.

[00:04:46] Host Amber Smith: And is there a charge?

[00:04:47] Julie Lombardi, DPT: There is a membership fee that is, I believe, around $75 a month. However, nobody is turned away based on costs.

They want this program to be available to anyone who needs it. And so there are scholarships available. And even the members of the organization, the other people who are members believe so strongly in it, some of them even pay double membership dues to cover another boxer. And there's grant funding. So there are creative ways to help people be a part of this organization if they can't afford it.

[00:05:20] Host Amber Smith: Let me ask you, if you would, to give us a description of what Parkinson's is and what percent of the population has it or will develop it.

[00:05:30] Julie Lombardi, DPT: Parkinson's is what we call a neurodegenerative disease. It is a disease of the brain in which the cells that produce dopamine start to die off. And it is pretty common in terms of neurodegenerative diseases. It's the second leading neurodegenerative disease site behind Alzheimer's.

There's about, I think, 1.5 million people living in United States with it, about 90,000 new cases a year. About 1 to 2% of people over the age of 65 do develop this disease. So it's one of the more common neurodegenerative diseases that we experience.

[00:06:10] Host Amber Smith: How does somebody know that it's developing in them? Are there symptoms to be aware of?

[00:06:16] Julie Lombardi, DPT: There are symptoms that are considered the cardinal signs, and those are tremor, so you'll often see a specific type of tremor in the hand, although tremors can occur in other areas of the body; rigidity, which just means like a stiffness; there's slow slowness of movement, which we call bradykinesia; and then postural instability, which is like difficulties with balance. And if somebody's experiencing some of those, they may then end up being diagnosed with Parkinson's disease. Although having those symptoms doesn't mean you definitely have a typical idiopathic Parkinson's disease. It might be something else. So obviously seeing a provider that's well versed in the disease is how somebody would get diagnosed with this.

So those are the cardinal signs. And again, you don't have to have all of them to be diagnosed. But there are signs that show up somewhat before that. People that eventually go on to have Parkinson's disease, many of them have something called REM sleep disorder. So typically when you're sleeping and you're dreaming, your body should kind of be paralyzed. These folks are known to act out their dreams, so they're punching their partners in their bed, maybe rolling out of bed, falling out of bed. So that's something to talk to a medical provider about if you're experiencing that, as well as one of the interesting things is loss of smell can sometimes occur well before some of the other symptoms show up.

[00:07:40] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with doctor of physical therapy, Julie Lombardi from Upstate's College of Health Professions, and we're talking about Parkinson's disease.

We don't know what causes this though, right?

[00:07:57] Julie Lombardi, DPT: It's one of those disorders where we think genetics kind of contributes to it in terms of some people may have a genetic predisposition, and then environmental factors can come into play. There have been some environmental toxins that have been identified, pesticides and herbicides. The one that comes to mind is paraquat, as well as some metals that are toxic. So exposure to some specific chemicals has been linked to Parkinson's.

The disease process is often a misfolding of some proteins that we naturally have in our brain. And so these proteins misfold and deposit, as well as some of the powerhouses of our brain cells, the mitochondria, start to become dysfunctional. And so all of those things combined contribute to the disease process.

[00:08:45] Host Amber Smith: What is done for treatment?

[00:08:47] Julie Lombardi, DPT: There is no cure. And, there are several organizations that are working towards a cure, which is great.

Right now treatment is, and has been for a while, targeted at symptoms. And so there are medications that people often go on that can be very helpful with their symptoms. And one of the most common ones that people hear about is carbidopa levodopa, which helps to increase the ability for the brain to use dopamine.

And then exercise. Exercise is treatment. It also can help to kind of protect the brain cells because of the release of some chemicals within the brain, something that is called BDNF, brain-derived neurotropic factor is released with exercise and can help to protect those nerve cells, possibly slowing down the progression of the disease. So medication, exercise, there are some surgeries and other treatments that are a little bit more invasive that can also be helpful.

[00:09:44] Host Amber Smith: Have you seen people improve their Parkinson's symptoms after exercise?

[00:09:50] Julie Lombardi, DPT: Absolutely. So as a PT (physical therapist) it's one of the most exciting things, one of the things that I really enjoy about working with people with Parkinson's. If they haven't had therapy before, they come into it thinking that they just can't improve because they have this disorder that's progressive. But it's so not the case.

We often are able to just get people moving and thinking about movement differently and working intensely. One of the keys is that moderate to vigorous intensity exercise is really helpful. So pushing people to a limit that they didn't think they could move at, within tolerance, can be extremely helpful in getting people to move better. And so it can help with their movement, it can help with their mood.

Parkinson's is not just a movement disorder. I mean, it's considered a movement disorder, but there are these non-motor symptoms that can actually impact their quality of life even more than the movement issues. And so exercise for anybody can improve mood, it can improve sleep, improve digestion. So all of those things also happen in a person that has Parkinson's disease, which is why exercise is just kind of like that silver bullet that hits everything and helps improve quality of life and mobility.

[00:11:00] Host Amber Smith: I've heard that boxing is a really good workout. Is that why that was chosen first, looking at the connection with Parkinson's?

[00:11:09] Julie Lombardi, DPT: Boxing is an incredible workout. And so when we were first getting the Rock Steady Boxing program started in 2017, those of us that were a part of it went and also got certified to deliver that type of exercise, but also started to work with an amateur boxer ourselves to really, like, learn more about what is boxing. And it is hard. It is really hard. There's so many things about it. You are pushing. You're kind of being queued to hit as hard as you can. And so with people with Parkinson's disease, they often have this, like, change in their sensory awareness of how much effort has to go into their movements. And so when you have a coach telling you "go harder," you put more effort behind your movements, and you're able to move differently. So there's that.

There's the cognitive component. With Parkinson's, cognitive processes can slow down. So the ability to think can kind of slow down and become more challenging. And especially when you're trying to think and move. That doing two things at once can be really challenging. And so boxing targets that. So it might be certain combinations of punches. So you're going to hit with your left hand first, then you're right. And then you're going to squat down and duck. And then you're going to come back with a right hook. And so, having to remember that sequence, with also moving fast and hard, all of those things together are specifically targeting the areas that people with Parkinson's have difficulty with.

On top of that, it's challenging your balance. If you're having to hit something hard, move out of the way -- nobody's ever hitting the participants; it's non-contact -- but we'll do things like swing an arm over their head, telling them we're going to be doing this as part of the drill, so that they have to duck or dodge a punch. Obviously we would never actually land a punch. But getting people to move quickly, that agility piece, is a part of it as well.

[00:13:03] Host Amber Smith: Is this something that needs to be done every day? This kind of workout. It seems pretty intense.

[00:13:09] Julie Lombardi, DPT: It is pretty intense. And so there have been guidelines that have been published for exercise for people with Parkinson's disease. The goal is to achieve at least 150 minutes per week of aerobic exercise, and then at least two times a week of strengthening exercise and balance. And then some flexibility exercises should be completed at least three times a week. Every day would be best. The intense exercise can be those two to three times a week, um, trying to get to that goal of 150 minutes.

That being said, any exercise is better than no exercise. So if it's taking everything out of you just to do it one time a week to start, then that's where you start. And so, that's what I was saying earlier: We kind of meet people where they're at. So whatever it is for that person, wherever that person's at, that's new to the gym, it's completely acceptable. It's a really supportive environment there. And I'll say that that's been one of the barriers for some of the patients that I've seen in the past.

When patients finish with physical therapy, we often want them to continue with some type of exercise because this is a progressive disease. And so you have to stay on top of your symptoms and stay on top of your fitness. And so I would often recommend, "I would like you to go to community exercise program." Community exercise programs are great because that social aspect keeps people involved and gets them exercising longer, as well as it helps with mood. And so people would be interested but often afraid to go that first time because it's something new and you're telling me, I'm going to go box. This all sounds really scary, you know?

And so just getting somebody there the first time to kind of see what it's all about and even just to observe a class, meet some people, see what a supportive environment it is, that can break that barrier. And then knowing that, hey, you know, some people are standing in this class, some people are sitting, everyone's just doing things to their level. I think that can break down some of the fear in joining.

[00:15:05] Host Amber Smith: Are there volunteer opportunities at Empower Parkinson?

[00:15:09] Julie Lombardi, DPT: Absolutely. This organization would not be in existence without its volunteers. There's amazing volunteers and so many different ways to volunteer. There's about 25 volunteers right now. They consist mostly of people who are retired, or we have a few medical students and PT students that come in to help from Upstate.

And they have different roles. And so some of the volunteers are there to help keep people on their feet while they're doing the exercises, so if somebody who has more mobility challenges during certain types of exercises maybe needs somebody next to them. There are also opportunities to volunteer to do things like help out at the different conferences and maybe taking registrations.

We have some med (medical) students are doing this really awesome program right now where they are buddying up with people with Parkinson's. So there's a lot of isolation in a disease like this. People start to feel like they don't want to socialize as much with some of the symptoms. Maybe they're drooling. They might have a masked face, meaning like they don't have a lot of facial expression. They can't think as quickly, speak as quickly, and so they tend to withdraw a little bit. And so med students have decided to implement this program where they buddy up and they meet up with these folks in various ways. A lot of it's this board game night, just to have some social interaction.

And it also -- I think with any volunteer opportunity, there's give and take, right? -- so the med students there are learning about the person behind the disease. So instead of just learning about a disease process, they're learning how to see somebody holistically.

[00:16:46] Host Amber Smith: How would a family get involved if they have a loved one they think would benefit from these classes?

[00:16:54] Julie Lombardi, DPT: To get involved, the first step is to just show up, or call, or visit the website. So all of the information is on their website. It's in EmpowerParkinson.Org, and that's Parkinson without an S at the end. So EmpowerParkinson.org. If you go onto that website, you'll find all the information about classes, signing up, or again, you can just call the phone number on there -- 315-729-7178 -- figure out a time to go there and meet up to learn more about it. Everyone is really welcome to just even pop in at any point where there's classes and it's open.

[00:17:25] Host Amber Smith: Dr. Lombardi, thank you so much for making time to tell us about Empower Parkinson.

[00:17:29] Julie Lombardi, DPT: Thank you again for inviting me.

[00:17:32] Host Amber Smith: My guest has been doctor of physical therapy, Julie Lombardi from Upstate's College of Health Professions, and from the organization, Empower Parkinson. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please tell a friend to listen too. And you can rate and review "The Informed Patient" podcast on Spotify, Apple podcasts, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.