Community & Goals: Keys To Parkinson’s Exercise Success

Sarah Ingersoll, MS, MBA, RN

Thank you. To everyone who is with us, I am going to start with disclosures, as people are always supposed to do, and I disclose that I exercise. I am not just telling you about the book. I am going to tell you that you should exercise, and I do it myself. You will notice that we are wearing matching race shirts. You are not matching for the same thing. I am. That was not by design. You just dressed independently. I exercise. I recommend that you do it. I think you are generally aware of the idea that something is good for you and you should do it. How do you go about making that happen? 

That is what I have focused on for several years now. Initially, when I got old, I thought I should do a little exercise, but I did not. Then I joined a team, and that was very helpful to me because it is very helpful to have your teammates out there. You have friends who are nine years old who play soccer, and they would not do it without their teammates, and they would not do it with as much energy, fun, and enthusiasm without their teammates. So that was very inspirational to me, and that is my disclosure to start with. I think that one of the questions that Ken is going to ask me is: What does the literature say about exercise? I do not want to assume that you all have not looked at the exercise literature because you have and you all know that you are supposed to exercise. The evidence is very, very strong. It is very strong for people who do not have Parkinson’s disease, and it is even stronger for people who do have Parkinson’s disease. It has been studied a lot. There are mouse models, and they have done all things. It is good for you.

 I think we need to check that box and then move on to the big question: how do you do it? I do not know if you have seen the Roz Chast cartoon, which I could share with Ken later, and it is a terrific cartoon. It explains what I do in seven words. It is a cartoon of a middle-aged, larger gentleman sitting in a chair. The title of the cartoon is The Mind-Body Problem. There is a little speech bubble above his head that says, Get up, and there is a little speech bubble above his midsection that says, No. It is not just people with Parkinson’s disease. 

There are a lot of people. We all should get out there. We know that. What does the literature say about getting out there? The CDC just published a new set of guidelines for older Americans, which say the same stuff that they said for everybody, which is that you should exercise 150 minutes a week. There are no excuses. We do not; if you cannot do it well, you should try to do it, and you should do as much as you can. We do have chair exercises and things like that. But I often notice that people who are sitting in chairs should be getting up from that year. That would be my first opinion. Do not be too ready to make excuses for yourself; it helps. 

Let us see. The second question that I was going to address, I think, was: How did my views change about exercise? I started working with Parkinson’s disease, and that needs a little history here. I was not always working in neurology, but when I did start working in neurology, I learned they had the usual excuses, such as these folks with Parkinson’s disease and my department of neurology. I said, Well, let us start a team just for us. We started a team, and I am wearing a shirt today, which I will now advertise. We have not changed this shirt. We have been doing it since 2010. We wear our shirts, and we have our cheer. Our cheer is To Train Focused. We have had pretty much the same coaches. We have had a few coaches over the years, and we get together every week and encourage one another. 

That leads me to the one thing that, in the new CDC guidelines and other guidelines that tell you about some great programs, they do not always tell you the power of getting out there and getting a medal. One of the things that we do every year is train, have a good time, and socialize. Socialization is an important part of it. But we are training for a goal. We have a goal race. We do a 5K on Memorial Day. We have been doing the same race for several years now. I do not have the resources that would allow us to do six-minute walk tests or any testing of your abilities or whether you get better or worse. But we do have tough times, and I recommend it very much. I suspect that you have all heard of the Boston Marathon. The Boston Marathon is pretty expensive; it is very hard to get into, and you do not get paid for entering. All you get is a medal and bragging rights, of course, and the guy who has put that on for many years wrote a terrific essay called The Power of the Race Medal.

Kenneth Sharlin, MD

Hmm.

Sarah Ingersoll, MS, MBA, RN

Here we are wearing the t-shirts that we get when we race. I did not put on a medal, and neither did our host. But we could have done that. It is very powerful to cross that finish line. We have a group of people with Parkinson’s disease, some of whom need a lot of help. We choose a race we can wear. There is no part of time where you can lend a hand. if you need to, if you need to bring your walking poles, or if you are not able to do it at all. We have a cheering section where our shirts are. I want to also emphasize that this is an important element of socialization and getting together, cheering for one another, and offering that moral support, whether or not you can do a whole 5K. Of course, every year, some people who swear they cannot do a 5K come across the finish line looking just great. Do not write yourself off too quickly, and then, of course, they come back because that is the way these things work.

Kenneth Sharlin, MD

Community and connection, purpose, and accomplishment. I can, even in the face of a diagnosis, which in and of itself is very healing.

Sarah Ingersoll, MS, MBA, RN

Yes. Thank you. Absolutely. Yes.

Kenneth Sharlin, MD

It is wonderful. Do you distinguish—and I am curious—between exercise and movement? For example, we have exercise prescriptions that are part of our integrative neurology program. Look, we are human beings, and we see. Just when you come to the doctor, say, Well, have you been taking your medicine? Well, sometimes I forget things like that. This is just human nature. Are you doing your exercises? Well, I am walking well, and I am gardening. Well, I am mowing the lawn. What are your thoughts on that? 

Sarah Ingersoll, MS, MBA, RN

My thoughts on that are yes. My thoughts on that are that I believe in exercise prescriptions, and that will be my next step. I work very closely with the local physical therapy practice. They have been the biggest source of referrals for the 5K teams. We have plenty of people. We have a great group. They are just terrific folks, and I want them to start writing exercise prescriptions because I think that is a very compelling way to do it for your patients. We have been less successful with the neurologists recommending the 5K team. They have gotten better. I try to send them enough video clips of their patients looking happy that they will be able to recommend it. But it is a little challenging. 

Exercise prescriptions are great. What about this movement? What about mowing the grass? Anything is good. I am not a purist when it comes to you having to do the tango instead of the foxtrot. There is a lot of that out there. There are a lot of people who want to know for sure if this is the best exercise. I cannot guarantee that walking is the best exercise that running is, and I belong to some fairly hardcore teams myself. I do not think it is appropriate to be hardcore about everything for everyone. If you mow the lawn, good for you. But then you should also do it.

Kenneth Sharlin, MD

It is.

Sarah Ingersoll, MS, MBA, RN

It is not either.

Kenneth Sharlin, MD

A big part of it is that you have a training group. It is not just the day of the 5Ks.

Sarah Ingersoll, MS, MBA, RN

No.

Kenneth Sharlin, MD

We say that the goal in the end is that you have signed up for the race, but you have a training group, so there is a regular connection. There’s a regular movement where people are getting together and training for that event.

Sarah Ingersoll, MS, MBA, RN

Yes.  I think I sense you can; we are both members of the American Academy of Neurology, and I bring a poster pretty much every year to the academy to talk about one or another aspect of training and activity and how you recruit people. How do you use your team as a recruitment tool for clinical trials of various sorts so that we can do that also? We try to make things as scientific as possible. but we train all while we do not train it when it is very hot here in northern California in the summer. We do take a break in July and August, but we will get back together. 

We have been doing this since the first year I took a summer break. I thought, well, they remembered me in September. The answer is yes. They all come back in September. Everybody knows it is too hot here and in other places. It is too cold in northern California. We’re very lucky to be able to exercise outside for most of the year. as there is an emerging science of the benefits of exercising outside of doors. We try to do that. Yes, as much as possible.

Kenneth Sharlin, MD

Let us go back to Roz Chast, because we want to make this very practical, and exercise has, and I am going to role-play a little bit. Exercise has not been a big part of my life. To complicate things further, I have been experiencing this change in my walking. I am shuffling. I have had a few falls. My right side does not work as well as my left side. You are telling me that I should run a 5K? 

Now, we are going to do this. We are going to do this. But how? What is the first step? What do I do to make that transition? If you are, I am sure you are quite familiar with the transtheoretical model of change and that we are going to go from this very contemplation to contemplation to preparation. We are transitioning from contemplation to preparation because you have my interest. At least you have my interest. How do we then take action? Yes, I am going to sign up. I am willing to sign up, but I am still back at the cartoon level. What is my app? My first action step goes beyond signing up.

Sarah Ingersoll, MS, MBA, RN

Well, let me digress back into academia just very briefly to say that The New England Journal of Medicine put it very well when some well-knit doctors made the point that it is not just your doctor telling you to exercise; that is just not enough. You. It is your environment. You need to have your environment tell you to do this. Having said that, once I have a name for someone who’s gotten to the point where you just role-play, I tell my contacts in neurology or physical therapy. Tell them I would love to talk to them. My message is that if we are successful in connecting and people often tell the doctor or the physical therapist, yes, it sounds great. then they do not think it sounds great. We have all heard that in the exam room, you hear all the stories, but some of the people are interested enough to let me call them. When I call them, I say, I would love to see you. Here is where you are going to meet me, and I am going to be waiting for you there. Here is exactly what you are going to do, and it is going to be: You do not have to sign up. That is another thing that I will bring to you when I talk about our conceptual framework.

I think you have to make it easy for people to the extent that people have to go online, get a password, sign up, and have to tell what, let alone describe your medication program. Anything at all I say is, You come; I will be there. I will meet you if they have a friend. Anybody else that they know doing it, that is fantastic. Usually, they do not. Usually, I say, I would love to meet you, and let us get together, and there is no sign-up. There is no feed. There is a free lunch. We have a free lunch. I will tell you about that. Only about half of people can make it. But if you can come, most, but not all, of the people who come will stay with us. 

The hard thing is just doing what you want to do: making an invitation that is compelling and has as few barriers as possible. We are not very good at doing that in academia. You have got to sign up. You have got to have your whole record on file. I ask people to sign a disclaimer, a disclosure, when they get there, saying that they are doing it at their own risk. I have never had anyone say they would not do it, but I do not ask for anything else upfront because that is just a deal-breaker. We have been doing this since 2010; we are going strong. I sent you the video of us at our most recent 5K. It is all about the environment and making it easy for people to do it. It is easy. I hope that there are people in your community who are interested enough in doing this thing that you can make it easy for them. That’s awesome.

Kenneth Sharlin, MD

We are doing the pound on the Pavement 5K T-shirt. That is our local Parkinson’s group for our annual 5K, and it is a lovely event that I have participated in several times. I would say in general that, as you can imagine, it is set up as a fundraising event. What we need to do is say, Hey, maybe if you have the diagnosis of Parkinson’s disease, you can run it for free. You can run it for free.

Sarah Ingersoll, MS, MBA, RN

Not only that, you can bring your caregiver, too, because I encourage one of the other things that we neglect in health care: when we send someone when we write for someone to have a physical therapy appointment, then their caregiver gets to sit in the parking lot and file her nails, whatever. Another important issue is: how do we make this appealing to the caregiver of the friend, your daughter, who is going to bring you? Please encourage them all to come. Also, free lunch for them, too. We want it; we need to make it appealing and easy. We often get involved in our programs, and we do not make it appealing or easy. That is my message there. That goes back to the New England Journal article that said, You have to make it. You have to make the environment welcoming to this; do whatever it is you want people to do.

Kenneth Sharlin, MD

Yes, my wife, Valerie, is a health and life coach. Brilliant. But does a lot of good work. But she listens to podcasts and lectures all the time. I heard one speaker say that physicians are not coaches. Typically, physicians are consultants because we tell people what to do. As you say in the New England Journal article, most often we do not respond as human beings to being told what to do. We respond when it comes from within. It comes from the heart, and so you have to have your why. Why should I run at 5K? Why is it a good idea when I have Parkinson’s? Should not I just stay on the couch? It sounds like by the time folks come to you, they have already been exploring their why. It may not be in complete focus.

Sarah Ingersoll, MS, MBA, RN

They have. Yes.

Kenneth Sharlin, MD

They have already been exploring that reason. Why?

Sarah Ingersoll, MS, MBA, RN

It does mean that they are physical therapists because their neurologist has started them on the path. That is because you are frontline people. I am not at this point in the position I used to be in and have a different role at the university. But for the last several years, my role has been to work with people with Parkinson’s disease on exercise. I want to make a small push here. The Parkinson’s Foundation has been in part responsible for funding us, and we can hire coaches because we have support both from the Department of Key and from the Parkinson Foundation. 

That is another important message, and it is quite inexpensive to run these programs. I have great respect for the boxing programs that are for folks with Parkinson’s disease and the dance programs, but all of those require a certain level of equipment and space. One of the advantages of having a walking program is that it is our biggest expense. Every year is not for our coaches. It is to get registrations for our annual 5K. But still, it is something that many people should do because it is not a big investment in equipment or space.

Kenneth Sharlin, MD

How about outcomes? Because ultimately you are, I know there’s a question: how do we measure long-term outcomes? What are we measuring, and what can I expect if I have Parkinson’s disease, and besides a medal, somewhat the medal?

Sarah Ingersoll, MS, MBA, RN

Well, you will be proud of your medal, people. People are almost always proud of their medal, and it is worth getting. But outcomes are a tremendously important and difficult issue, and I added that to my question. That is a question I am part of, and I hope all of us can wrestle with it a little bit because innumerable studies on the benefits of exercise are short-term. No matter whether I am teaching the tango, the foxtrot, or the rumba if you do it for six weeks or even six months, I can measure some important changes. How about six years? I have been doing this since 2010, you start with a group of people who are in their 60s and 70s, and you follow them for more than 10 years. They are not going to get better because that is not good. The relevant metric for this exercise is terrific for you, but it will not make you 25 again. We have to be realistic about that. What will it do for you? What we have sent to the American Academy of Neurology are some stats on what it will do for your mood, whether you think that is a valuable thing, and whether the caregivers also get to weigh in on this.

They love it, and they always say, Oh, here I get to come; I get to participate, and maybe the metric we should be primarily focused on is the benefits for your caregivers and your family. You can bring your dog to our place, as long as it is a well-behaved dog, we had a badly behaved dog once that could not come. But we can accommodate almost anything. The metric is not going to be, yes, I can do a marathon. We have one guy who does marathons. That is wonderful. He has written a book about it. My name is John Ball. He is terrific, but he is the only one. He is given these scales back to half marathons now that he is in his 70s. The metric has to be how you feel. That is, I think, my best answer at this point, where we have a biomarker for how this is affecting some other dimension of your physical fitness. But I think feeling better, as exercise is an acknowledged treatment for depression, is for people not with

Kenneth Sharlin, MD

Parkinson’s about it. Yes, but there is some data. There is some data on the impact of exercise, for example, on dopamine levels.

Sarah Ingersoll, MS, MBA, RN

Yes.  

Kenneth Sharlin, MD

Can you talk a little bit about that?

Sarah Ingersoll, MS, MBA, RN

Yes. We do know that it affects not only chemicals but also connectivity. Exercise is good for brain connectivity, processing speed, and other things that are positively impacted by exercise. certainly, in the short term, we usually conduct those kinds of studies over quite a short-term time frame. It is rare for someone to say that I am just raring to go now that I have exercised for a couple of weeks. But the fact that people come back year after year to exercise as a team tells me that they find it a valuable experience. That brings me back to the whole issue of how you make this easy for people. But, yes, you can take some measurements there. I would not call them surrogate endpoints for a study. I think we have yes; we can demonstrate short-term things, but I am interested in long-term outcomes.

Kenneth Sharlin, MD

We always say here that one of the things that I want to see from my patients is that they can talk about how they are doing today because their quality of life today is better than it would be if they were not doing this. It is almost always 99% of the time. It is. This approach that we have is called Lifestyle Medicine. Functional medicine complements all of the traditional tools in the toolbox. It isn’t curing the disease, but it is allowing for a greater level of function and quality of life than we would see if someone was not doing these things. That is very rewarding.

Sarah Ingersoll, MS, MBA, RN

Yes. I am the immediate past treasurer of the Academic Consortium for Integrative Medicine, and lifestyle is my greatest interest. I think that there are other wonderful modalities, but I think that if you get the lifestyle part, well, well-organized, and you are getting some, you are eating a healthy diet, you are getting some exercise, you are getting sleep, and the rest will fall into place as best it can. Sometimes there’s a limitation to that. Now that I am not getting any younger, I am more ready to acknowledge my limitations. But we just do what we can.

Kenneth Sharlin, MD

Absolutely. There is another common, and probably one of the most common, non-movement symptoms of Parkinson’s disease. That is also almost certainly improved with exercise. There has been some data on other chronic neurological diseases looking at the impact of these lifestyle factors on fatigue. Yes, such a common complaint. When we introduce these movement programs and use objective measures of fatigue as objective as we can be, they are still generally self-administered questionnaires, but fatigue often does improve, and that is important to folks.

Sarah Ingersoll, MS, MBA, RN

I am glad you brought that up. Yes. That is not something that we have surveyed for in the past because we put more of an emphasis on the social component. that I think is very important. Thank you.

Kenneth Sharlin, MD

There have been some studies that have looked at other biochemicals, or perhaps things at the cellular level. Say we talk a lot about, well, what are some of the things that are driving Parkinson’s? There’s evidence of mitochondrial dysfunction. Then we exercise, and mitochondrial function improves respiration, the ability to produce energy, and perhaps the ability to balance oxidative stress.

Sarah Ingersoll, MS, MBA, RN

Then, and yes, there are a lot of very good animal studies, some of which are conducted by a colleague of mine in the same department using rats. You can pretty easily demonstrate that there are some mitochondrial benefits. But I want to be focused mostly on the benefits that you will notice. Having people tell you that your brain imaging is better is fine. If you do not feel better and you cannot get out of bed, then I do not care so much about your brain image. That’s because I am so clinical. But I respect the people who are on the other side. On the scientific side.

Kenneth Sharlin, MD

Yes. We ultimately, again, have to say, Why should I do this? Sometimes I do not know where this came from, but I heard someone say, I think probably this goes back to my training in neurology that there was an expression at the Massachusetts General Hospital that no one should be allowed to die with their electrolytes out of balance. Well, of course, yes, we can all the time.

Sarah Ingersoll, MS, MBA, RN

But we have similar stories about, yes, you do not get to die in my ICU unless you have had certain medical interventions. Yes. The reason you could do it is for yourself. You do it for yourself. You do not do it because it is going to help Dr. Sharlin study or prove something. You do it for yourself. That is my approach to individual individuals whom I get a chance to talk to and hopefully persuade to join this team.

Kenneth Sharlin, MD

There is tremendous enthusiasm in an integrative clinic in which we bring all the lifestyle factors into the experience of the patient. There is a tremendous interest in diet. First of all, I do want to hear about the lunch.

Sarah Ingersoll, MS, MBA, RN

Yes, that is. Let me talk briefly about lunch. We do not make a big deal about it. But one of my colleagues once said You can skip the stuff about exercise. Just say so to the free one. But so we have.

Kenneth Sharlin, MD

Over the years, there you go.

Sarah Ingersoll, MS, MBA, RN

Over the years, we have developed a free lunch that we now have every week, and it is a very popular lunch. It is a giant pot of lentil stew. The Washington Post just ran or was some other popular news outlet, Why Americans Should Eat More Lentils. First of all, we eat them because they are cheap and easy to prepare. You can make it so enormous that I want those. I will share my special recipe with you: you can make big, bad lentils, you can schlep them to your park, and you can walk in the park. When you are done with your walk, you can serve lentils. I also serve coffee. If people want to bring other stuff, that is okay. Sometimes they do. But the official menu is coffee and lentils. That is my story to tell you. 

The secret to making lentils that everybody loves is to put, when you put your lentils, your bra on there. They are vegan lentils, by the way, because lots of people can eat lots of stuff. I have yet to meet someone who cannot eat lentils because they are sensitive to them. You put just a little bit of molasses, which is a secret, in them. then it just cuts that bitterness. You do not put in a lot, just a little bit. Anyhow, lentils are very popular. We have lentils every week. We do not give a lecture on diet. We just serve lentils. It is just the way it is done. Then we do a little bit of proselytizing for a healthy diet, but we mostly lead by example. That is what we try to do.

Kenneth Sharlin, MD

Well, that is wonderful, folks. Before we started recording this interview, I was telling Sarah  Ingersoll about an idol, a woman that we cherish for her contribution to athleticism among older adults. If you have not heard about her, this is Sister Madonna Buder. They say that in the Ironman triathlon, they had to make new age group categories for her because she was the oldest competing athlete and she gets older a little bit every year. Then they say, Well, we do not have a category for that. They have to make a new category for her. One of her many wonderful accomplishments is that, of course, she is an elite athlete, but she did not become an athlete until she was about 60 years old. It is so important to know that you do not have to be the Ironman she is or the Iron Nun, as she is sometimes referred to. But you are not too old to start a movement program in your life.

Sarah Ingersoll, MS, MBA, RN

That is why I did not talk too much about that. I love that. I did not learn to swim until I was 65. If I had known we were going to talk about Sister Madonna, I would have chewed up photos of me racking my bike. Next to Sister Madonna are age group nationals and triathlon, which I did for three years. I think we were there together. At any rate, do not worry about being a duo. Forget that idea. Just keep going.

Kenneth Sharlin, MD

Just keep going. Folks, when they come to me sometimes, they have read the blogs, watched the videos, listened to podcasts, and some things are very trendy ketogenic diet, high intensity interval training, and everybody wants to jump into the formula. But what we always say is, Hey, let us just take a moment and learn about who you are as a person, where you are at this moment in time, and whether or not those tools are presently or eventually for you. They are just tools. But the goal is to let us just get one foot in front of the other for now.

Sarah Ingersoll, MS, MBA, RN

That is it. Yes, that is great.

Kenneth Sharlin, MD

Everyone can accomplish something. We can hope we can put our sister Madonna posters on our wall next door, rock and roll posters, and everything else, but that is just to give us that pie in the sky of anything possible. Even with Parkinson’s disease, we can bear that in mind.

Sarah Ingersoll, MS, MBA, RN

To make this a little more personal, you sign up for at least 5K, we will have a photographer at the finish line, and then you will have a wonderful picture of you crossing the finish line.

Kenneth Sharlin, MD

It is so true. At the Ironman, you may know that it is a tradition, not just to stick around and welcome the most elite professional athletes to cross the finish line in the midday time. But that race that usually starts at about 6:00 in the morning goes until midnight the very same day. It is a tradition to equally, if not more, welcome the midnight finishers because they are the finishers. They are the heroes of the race. You can be the hero of your 5K’s equally as well.  Well, Sarah Ingersoll, it has been such a pleasure to chat with you today. Before we wrap up our interview, is there anything you would like some of our viewers to know, if they want to read more or connect with you, your program, or your research, can you give them a little bit of information?

Sarah Ingersoll, MS, MBA, RN

Well, yes. I think I sent you the links to the ANN. If anybody feels free, to contact me personally. You have my contact information, anybody feel free to email me, and we will talk about your specific situations and what you can do to get moving. But I do not want to be part of the message, so feel free to contact me.

Kenneth Sharlin, MD

That would be wonderful. Once again, we appreciate your willingness to participate in the Parkinson’s Life Summit. A very, very important message. You can move. You should move. Sign up for a race; find yourself a group that you resonate with because it is because it has. It is as much about community, connection, and purpose as it can be. By golly, your life is just beginning. It does not end with Parkinson’s disease. There is much left to give and to learn. and so it is a wonderful message that she is sharing. Thank you again.

Sarah Ingersoll, MS, MBA, RN

Thank you.

Kenneth Sharlin, MD

Thank you so much.