Ed Begley Jr. on Utilizing a Healthy Lifestyle to Thrive with Parkinson’s Disease

Episode Transcript

Dr. Daniel Correa: From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Katy Peters: And I am Dr. Katy Peters. And this is the Brain & Life Podcast. Good morning, Daniel. You know that our day jobs are physicians. I actually got to interview Ed Begley Jr., who is a prolific actor from film and TV along with being an advocate for both climate and healthy living. And he's also an author so we talk about his recent book. And the reason why I brought up being a doctor is that he was a TV doctor, probably one of his most famous roles on the hit show, St. Elsewhere. You may remember that.

Dr. Daniel Correa: I do, I do. It's funny to think back that far from when we were watching TV those many years ago.

Dr. Katy Peters: I asked him about being a TV doctor, which is a lot of fun, but they're often portrayed in medical dramas and sitcoms and they can be entertaining and even influential. And while sometimes what they represent as the realities of the medical profession are not real, they can really spark interest in healthcare and raise awareness about various medical conditions. Now, I know that you're a great podcast cohost, but any aspirations for the big screen TV or film?

Dr. Daniel Correa: Oh, my. Nope. I had a lot of anxiety even at the start of the podcast just listening to my own voice. It was the encouragement of the team here in the Brain & Life Podcast, the listeners and my most important listener, my mom, that made me much more comfortable recording the podcast and bringing this to you, the community. But I'm pretty sure I would freeze in front of the video camera.

Dr. Katy Peters: Well, I just want to say thanks, Mom, for making my co-host the best. So I appreciate it. But today we're going to have Ed Begley Jr. He's going to be sharing not only about his career and about his book, but also his diagnosis with Parkinson's disease and how he continues to work and thrive with exercise and healthy lifestyle habits. We will also hear from a neurologist Dr. Jori Fleisher about the specifics of Parkinson's disease, including her studies that involve exercise, particularly the martial arts and karate for patients with Parkinson's disease.

Dr. Katy Peters: Today we are joined by Ed Begley Jr. And, of course, our listeners will definitely know this prolific American actor. He has appeared in hundreds of films, TV shows and stage performances. One of his most famous starring roles is Dr. Victor Ehrlich on the TV series St. Elsewhere during the 80s. He had recurring roles on Mary Hartman, Mary Hartman, Seventh Heaven, Arrested Development, Meego and Six Feet Under. He is a longtime environmental advocate who has published books advising others on being more environmentally conscious. They're entitled, Living Like Ed, A Guide to an Eco-Friendly Life, an Ed Begley Jr's Guide to Sustainable Living, Learning to Conserve Resources and Manage an Eco-conscious life. In his new memoir, To the Temple of Tranquility...And Step On It!: A Memoir, he explores his personal journey that encompasses his eco-activism, challenges with addiction, recovery, his health and wellness. And I'll say also because I did read the book, it's also just some great anecdotes about the many family and friends and community you have particularly within your Hollywood career. It was a lot of fun.

Ed Begley Jr.: It was fun to do.

Dr. Katy Peters: Oh, good. I'm so glad. And today he will be sharing his journey with his diagnosis with Parkinson's disease and how he's managing this condition while working, writing, acting, and advocating. You do so much, Ed. It is pretty amazing.

Ed Begley Jr.: Well, I'm lucky I'm still busy at age 74. I thought I'd be retired by now, but I'm very happy to be somewhat retired, semi-retired, whatever I am, I still am quite busy.

Dr. Katy Peters: Well, I'm glad you're busy, and welcome to the Brain and Life Podcast. So one of the things I wanted to ask you about since one of your standout roles was actually playing a doctor on St. Elsewhere. I'm a physician, that's my other gig. What does your portrayal of a doctor on TV, how does it differ from your personal views on experiences with the medical field?

Ed Begley Jr.: I had the good fortune when I worked on St. Elsewhere in 1982. I was friends, very good friends, with several doctors. I got to go on fishing trips with them and spend time with them, and I saw that there were people, workers, highly skilled workers as I knew from other fields, people who were carpenters and plumbers and things like that, that did a very specific kind of work. Let's say a heart specialist works just on hearts or pulmonary specialist works on the lungs, et cetera, they had that kind of expertise. But they didn't go, "Oh, my gosh, what am I doing? I've got to save this person with his heart. I've got to be so careful." It's just like a guy working on a carburetor. They are careful with it, but they don't need to think of it as something holy or something other than what it is.

Ed Begley Jr.: It's a part that needs to be fixed, and they fix it. And there are people that do that sort of thing very well. I got into that rhythm of things and that way of dealing with it. The older TV shows like Ben Casey and Dr. Kilder, these shows from a million years ago when I was a kid, doctors acted very different than any doctor I'd ever met that'd come and knock on your door, "I didn't see you make your appointment Thursday. Why didn't you come in and see me?" I'd never had that happen, a doctor knock on my door and ask why I didn't show up. But Marcus Welby, this show back then did. So with St. Elsewhere we tried to do things differently where we saved people, but we also lost a lot of patients. That was a little more real.

Dr. Katy Peters: And that can definitely happen. So thank you for your portrayal of a doctor on TV. Now, on this podcast we talk a lot about different neurologic conditions. Have you ever received feedback, I guess, from either a physician or from maybe people that watched your TV about how those conditions were depicted on St. Elsewhere or other shows that you played a doctor?

Ed Begley Jr.: A few times there were rare occasions where we'd get something not perfect, not 100% correct. There was a little bit of fudge factor, and people would report back to us on that, but that happened rarely. They had very good technical advisors who were doctors who were quite expert in their field, so they kept us pretty honest, and we would learn to do suturing by stitching up through a piece of chicken or something. It had the same consistency as going through certain organs to get your suturing looking professional and like a real surgeon. I did a little bit of a study at County USC there walking the hallways, going on rounds, and so I had some nice training and the scripts were great, the actors were great, the directors were great, and Bruce Paltrow gave me the role of a lifetime, and I certainly thank him for that forever.

Dr. Katy Peters: Well, it was a great role, and, again, you've had been so prolific in so many different films. I will tell you that in medical school we also practiced on chicken.

Ed Begley Jr.: Good to know.

Dr. Katy Peters: So to do those nutrients, it's pretty much the same, Ed. It really is. So I had the great time with reading your book, and it's called To the Temple of Tranquility...And Step On It!, and I will say it was definitely a journey. Anywhere from all the people that you met in Hollywood to your roommate, I guess, it was Michael Richards, and then also a great story about the eels and Marlon Brando, which I think is quite wonderful. What inspired you to write this memoir?

Ed Begley Jr.: Well, it all seemed so unbelievable to me as I look back at it all. I thought I'm like that character Zelig in a movie Woody Allen did called Zelig. Who is this guy, and why is he here at Yalta? Why is he here at these different incredible historical events? There's a guy in the background, I saw him at the last meeting. Who is he? How did he get here? Who invited him? That was me. I was either that or maybe Forrest Gump or maybe Chauncey Gardner from being there. But I was this hapless guy that wound up in these important rooms and nobody was quite sure how I got invited, certainly not me.

Dr. Katy Peters: I know, and especially with The Beatles and with Yoko Ono. You got to know so many people. When I was reading your book, there's so many adventures from whether it was a relationship with your family, particularly your father, that you discussed to these Hollywood icons. What was the most challenging thing about reliving it and sharing it?

Ed Begley Jr.: It was all very good. There wasn't a lot of it that was painful for me to read or write. I just remembered it and tried to do it honestly, not leaning on the facts to make them fit one way or another to what I thought I intended. I tried to just be painstakingly honest.

Dr. Katy Peters: I'm going to put a big plug for this book because it was so enjoyable. It was a quick read and a lot of fun, and I like that you just really opened up and shared your connections, your community. And now because this is the Brain & Life podcast and we talk about the neurologic conditions and also the brain, I'd love for you to share your experiences with Parkinson's disease. What's that journey like?

Ed Begley Jr.: Well, I had it certainly since 2004. Probably before that there was some signs, but I didn't know what it was. I was in such good health. I just kept riding my bike up to Mulholland from the valley floor every day and riding around Franklin Canyon Lake in LA and eating well, and so it could never really grab hold of my neurological system that easily. So by 2004 then all this stuff really started to get my attention. I lost half my sense of taste and smell, and I had trouble with my balance. A neurologist who's a friend of my cousin Tim actually when I walked out of this party Tim was having, his birthday party, the neurologist goes up to Tim and said, "How long has Ed had Parkinson's?" And Tim says, "Ed doesn't have Parkinson's. I think he'd tell me that. I don't think you're right."

Ed Begley Jr.: He said, "Well, he sure looks like it the way he's flopping his foot and he's holding his left hand like he has a soft drink can in it, but he doesn't. He's just holding his hand kind of like this." And so all the signs were there. I never knew I had it until I went to a speech therapist after the first meeting I had with her because I was starting to even slur my words a bit by 2016. I thought, "What's that about now?" After the first meeting with her, she called up my doctor and said, "I don't see it anywhere in his chart. Why is it not mentioned that Ed has Parkinson's?" And the doctor said, "I think you've solved a mystery for us that we couldn't figure out in 2004. I think you might be right." And of, course, I went to two top neurologists, UCLA and Cedars, and I did have Parkinson's of course, but just by nature of my good lifestyle or something, I was very strong and in good shape and exercised vigorously and daily I kept it at bay, and it was unnoticeable to most.

Dr. Katy Peters: And that's really important because we just presented a paper on our podcast for neurology in the news and having a better exercise behavior is linked to having or delaying a diagnosis of Parkinson's.

Ed Begley Jr.: That's what seemed to happen with me. Yeah.

Dr. Katy Peters: Your healthy lifestyle definitely help that. Now, you mentioned a speech therapist. I think your speech sounds great, and I've listened to other interviews. Are you still working with a speech therapist for your Parkinson's?

Ed Begley Jr.: I do. And before I do any interview like this, I go, "Bibbidi Bobbidi Boo, kicketi kocketi too, diddeti doddedi do." I do these little vocal exercises. I have to, otherwise I'd be on here I'm 74 on my birth certificate, but suddenly I'm 94. Hey, Katy, good to see you. It's wonderful. No, I don't have any problem with Parkinson's, nothing at all. Because I've got to warm it up. It's use it or lose it.

Dr. Katy Peters: I agree. Bibbidi Bobbidi Boo. I love that. It's a great tool. And you've touted physical exercise and regular exercise. How do you in particular remain active? You mentioned you have a speech therapist, but what else are you doing now to combat your Parkinson's by remaining active?

Ed Begley Jr.: Here's what I do. I have vigorous exercise every day. I go to a gym in LA that opens up at 5:00 AM and closes up at 11:00 at night. So I can't go, "Oh, it's too early, it's too late. I can't make it before or after work." They're open long hours, so I don't have that excuse anymore. So I do that. And also I'm very active out in the garden. I have a vegetable garden. I'm always planting something or changing crops, mixing up compost and active in that way. And I ride my bike still. I've been riding my bike my whole life, and I haven't stopped that because of my condition. But also, let me be very clear, the neurologists know what they're doing. The guys I see certainly do, and you good people know very well how this disease works. I take all the dopamine that they tell me to take, the carbidopa levodopa. I think it's called Rytary. It works very well for me. I do everything that the neurologists say.

Ed Begley Jr.: Then for extra credit, if you will, besides the exercise, my wife found some things that some people feel helps and it's helped me, so I keep taking it. I've been taking something called glutathione, and that has helped me. People have neurological conditions, that helped some of them, and I'm one of them. I started taking something called NAD, and that has helped as well. Hyperbaric chamber, oxygen rich, hyperbaric, all that stuff had worked very well. And even some stem cells at this place that I found, so I'm doing very well. But, again, I'm not just taking jojoba juice or something and saying I'm going to be fine. I'm doing what the neurologists say. Then for extra credit, I try a few other things and see if any of them work and they have.

Dr. Katy Peters: Well, we like to call that integrative medicine.

Ed Begley Jr.: Yes.

Dr. Katy Peters: Because you can't get it alone. And I would say the first step of really integrative medicine is just getting educated about what's out there. It sounds like you got educated to find good physicians, you got educated to remain active and then also I guess the other aspects of integrative medicine. You mentioned your wife. It sounds like she's been a great partner to you in this journey. Can you elaborate?

Ed Begley Jr.: Let me be crystal clear on that one, Katy. When I heard the diagnosis in 2016, I went, "Okay, that's it." This is going to be near the end for me because my friend Bob Hoskins, a wonderful actor from Great Britain, Bob Hoskins, it was only three years from diagnosis to death. It was very quick for him. So I went to my neurologist, I said, "Do you think I'll have three years? Will I have that much time left with this?" And he said, "What are you planning on taking up skydiving or something? Are you going to go do the show Survivor or something and risk your life? No, you're going to live a long and happy life still, just got to be very careful with certain things and take some meds that we find work well." So that was 2016, and really the disease has not gone away, of course, but it has not progressed the way it has with many other people because I do everything the neurologists say and all that other stuff that I've chosen for extra credit. That seems to help me too.

Dr. Katy Peters: I like how you call it extra credit. That should be really a name for the integrative medicine. And it sounds like your wife has been particularly very helpful. Is that correct?

Ed Begley Jr.: Yes. Sorry, I got off track there. She's the one. I was ready to give up and just go, "Well, I have as much of three years like my friend Bob did." But she said, "No, you're not getting out of here that easy, Chump. I've got some plans for you." So she found all this stuff. It was found by her, not me. She looked things up on the internet. She consulted with professionals that we know. And so it all worked very well. And you can use the tools that are out there in many different ways, and we've used them. And the one thing I know, I would go in and get an IV drip of glutathione just to please my wife to shut her up about this stuff. Okay, I'll try it. I go and do it. When I walked back to my car, I was definitely walking steadier than I had walked to the clinic.

Ed Begley Jr.: Same thing with NAD. I'd go back to my car and go, "Okay, is this my imagination?" No, I'm definitely walking straighter, less like I'm slightly tipsy. And also I was a drummer, so I used to play this drum solo called Wipe Out way before your time, but I'll do it right now.

Dr. Katy Peters: Okay.

Ed Begley Jr.: I would do that for a while. I would do it on the way in to get the treatment for NAD and then I'd do it on the way out. It was always better on the way out every time I went. So this is not just walking the lower extremities, it's upper above the waist too. So there's something interesting going on, and I'm going to try to be scientific about it and see if it continues. And I have for years done this stuff and it seems to be fairly consistent the way it's been helping me.

Dr. Katy Peters: That's wonderful news. And I love how you're your own control. We call that a control experiment, that you're your own control. You do an activity beforehand and then see what happens later on. Do you have any other tips for our audience if they have a loved one with Parkinson's or if they have Parkinson's for themselves? What about in regards to eating or other healthy habits?

Ed Begley Jr.: Definitely eat right. I've eaten right my whole life since I was 20 years old back with the first birthday, 1970, I started eating very healthy, and that's continued to this day. In fact, I'm even better at it than I was before I was diagnosed. So eating right is very important. Vigorous, and I'm going to say that word loudly and clearly, vigorous daily activity. Maybe you want to take one day off a week, that's fine, but try to do it at least six days a week. And that's what I do. I try to do it every day and not take any days off. Vigorous exercise and eating right I think are key, and the right frame of mind to not get in the negativity. I started with going, "Well, I have three years like my pal Bob." The norm is three years, which it is not if you take the medicines and do everything right. That doesn't mean that you have to be one that is gone in three years.

Ed Begley Jr.: So I try to be upbeat about things, and it's easy to be upbeat because I had it definitely since 2004 by all the signs that I didn't understand what they were. I've certainly been diagnosed as having Parkinson's by medical professionals at top LA hospitals since 2016. And here it is, it's eight years later, and here's a good indicator of how well I'm doing. At some point on two different TV shows that I did, one was called Bless This Mess with Pam Grier and Dax Shepard and Lake Bell, and the other one is a show I'm still working on called Young Sheldon. At some point I went up to Lake Bell and to Dax Shepard and Pam Grier, I said, "You guys, thank you for being so patient with me with my Parkinson's." They said, "What? What did you just say?"

Ed Begley Jr.: I said, "My Parkinson's." I knew that they knew because I worked this close to them for a whole season. "We didn't know you had Parkinson's." And I would have my little tricks if I had a shovel nearby or something or a rake, I was this guy who lived in their barn. So I'd just get a gardening tool. I'd hang my hands on it and hold onto it. And so I guess I was not shaking as much as I thought I was. I put my hands in my pockets. This is a while ago before I was really taking the dosage I was taking and had things really refined the way I do now, so I'd shake a little bit. I thought everybody knew about it, was talking about it, whispering behind my back. Nobody knew what I was talking about. Same thing on Young Sheldon. I thanked the producer for being so kind to an old guy that has Parkinson's. He said, "What did you just say?" I said, "My Parkinson's." He said, "You have Parkinson's?" So far so good, Katy.

Dr. Katy Peters: Well, I think that's wonderful. And I would say you are definitely an inspiration to our patients because with Parkinson's and to their loved ones, because, A, you're working with Parkinson's; B, you're exercising with Parkinson's and you're thriving through this illness. So it's just wonderful to see how you're doing. Do you have anything else you'd like to share with our listeners? Anything about your book, your journey with Parkinson's or your family, friends, anything?

Ed Begley Jr.: Yeah, just live an active full life. Find the glass that's half full, not the one that's half empty and concentrate on that. Try to be very positive, physically positive and mentally positive and spiritually positive. And thank you for mentioning the book. It's pretty amusing according to all the people that I've met that have, in fact, read it. They get a few laughs out of it, which was my goal for people to be joyous reading it and be amazed as I am at some of the things and situations I found myself in. So just have yourself a wonderful family time and be very positive, but don't forget to do your exercise and keep your frame of mind positive.

Dr. Katy Peters: Great. That's wonderful. Thank you for sharing with our listeners about your experiences not only with Parkinson's disease, but also these colorful stories from your book. Be sure to check out Ed Begley Jr's book. I read. It's great. To the Temple of Tranquility...And Step On It!: A Memoir. And as always, thank you to our listeners, and I wish everyone brain wellness. Thank you.

Ed Begley Jr.: Thank you, Katy.

Dr. Daniel Correa: Can't get enough of the Brain & Life podcast? Keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainAndLifeMag or visit brainandlife.org.

Dr. Katy Peters: Hello, Brain & Life podcast audience. It is great to hear from Ed Begley Jr., about his experience with Parkinson's disease and everything he does to manage his own symptoms. In the upcoming expert interview with Dr. Jori Fleisher, we will dive into more detail about how exercise is a significant resource for patients that are living and thriving with Parkinson's disease. I am so honored to introduce our medical expert, Dr. Jori Fleisher. Welcome Jori.

Dr. Jori Fleisher: Hi Katy. It's such a pleasure to be with you and to be able to speak to this audience.

Dr. Katy Peters: Absolutely. So a little introduction for her. Dr. Fleisher is a fellowship trained movement disorders neurologist with a special interest in understanding the needs of individuals and families who are living with advanced Parkinson's disease and other movement disorders. She has a special interest in designing new models of care to better serve this population. Serving as an associate professor of neurology, she sees patients with Parkinson's at Rush University Medical Center in wonderful Chicago. Dr. Fleisher is supported by the NIH in various nonprofit foundations and has several research studies underway that are focused on the interdisciplinary home visits and caregiver peer mentoring programs to improve the lives of patients and families who are living with these conditions. Also, she's studying the impact of karate on mobility and mood and cognitive outcomes in people with Parkinson's disease. Dr. Fleisher, welcome again.

Dr. Jori Fleisher: Thanks for the very kind introduction.

Dr. Katy Peters: First, let's start out, just give us the 411. What is Parkinson's disease?

Dr. Jori Fleisher: Parkinson's is one of the most common causes of neurodegeneration, meaning it's a disease that affects certain brain cells and causes them to die off before they should. And the symptoms that tend to go with that, the most common things that we recognize, are a slowness of movement. So our fancy neurologic term for that is bradykinesia, which means movements that are slower than they used to be. They get smaller. Sometimes we think about people taking small steps or shuffling as they walk. We often think about tremor. So a tremor in a hand or foot is really common, but not everyone with Parkinson's has a tremor. We also think about stiffness of the muscles, stiffer than they should be, which is not because of injury or anything else. And sometimes it's interesting, people will say, "Oh, my muscles aren't stiff, I'm weak," because the brain interprets that stiffness of the muscles actually as weakness.

Dr. Jori Fleisher: So often people can go to many different specialists before they wind up with a diagnosis. And one of the other kind of hallmark features is trouble with walking or trouble with balance. And so, Dr. Parkinson actually described three people who he saw in his London office way back in 1817, three people who had the slowness, the stiffness, the tremor, and sort of this stooped posture at their shoulders. And just based on those three folks, he'd actually examined and walking the streets of London and seeing three other people he never actually met, but who shared similar symptoms, he described this condition, which he described as the shaking palsy over 200 years ago. And in the 200 years since then, we've learned a few things, including all of the many other non-movement symptoms that can go with Parkinson's.

Dr. Katy Peters: And what are some of those non-movement symptoms?

Dr. Jori Fleisher: So mood symptoms can be really common, so depression, anxiety and apathy, a loss of motivation. And I hear from a lot of people they're like, "Well, yeah, sure, depression. You'd be sad too if someone told you that you had Parkinson's." And everyone is allowed to have what we call adjustment disorder, but that's different than what we say when we mean someone could have depression as part of these conditions because it's actually a change in the brain chemistry. So the mood stuff I think is really important. But also constipation is a really common problem and often precedes any movement symptoms by years or decades sometimes. A change in sense of smell and also a lot of sleep symptoms. So an interesting phenomenon called REM sleep behavior disorder where people are having really vivid dreams, number one, but then also the switch in the brain that should flip when you're dreaming and you're thinking about playing basketball for example.

Dr. Jori Fleisher: If Dr. Peters or Katy if you were dreaming about playing basketball and I walked past your room, I wouldn't really see you doing anything. But if someone with Parkinson's is dreaming about something really active, they're actually acting out, they're kicking, they're thrashing, they're shouting, they're moving, and that can happen years or decades before the other symptoms. So there's a lot that we've recognized can happen at any point in the disease, and that gives us a clue about Parkinson's.

Dr. Katy Peters: Those are all just very interesting and especially the sleep abnormalities. And I guess it would be the caregiver or the loved one that sleeps with the patient is probably going to recognize that first. Is that correct?

Dr. Jori Fleisher: It is. And I'm still so surprised because I'll ask people frequently in the clinic, I'll say, "Do you ever do this?" And the person typically who has a sleep disorder isn't aware of it, they're sleeping through it. And I'll turn to their loved one if there's a significant other with them, and I'm like, "Does this happen?" And they'll say, "Oh, I don't know. We sleep in separate rooms." The very important question is why are you sleeping in separate rooms? Oh, well, starting 20 years ago, he started punching me in my sleep. Ah-ha. So it's not neurologists being nosy, it actually is really important to help understand what's going on, what the diagnosis is, and how else we can help because that's a very treatable symptom.

Dr. Katy Peters: I like the nosy neurologist. I think that's the best. I am going to start using that term because so often when I see my patients, it isn't the first question you ask. It's really probing sort of the second, third, and fourth question to sort of unpeel that onion. So I'm so glad that you're doing that for your patients. And for your patients with Parkinson's, are there particular types of people that are going to develop it or certain risk factors that people should know about?

Dr. Jori Fleisher: The number one risk factor that we know about is age. And so as people get older, the risk of Parkinson's increases. And there are some forms of Parkinson's where we have an increasing recognition that for some people there is a genetic cause. So there are a handful of genes where if you have that gene, you are at very high risk to develop Parkinson's. What has been discovered especially in the last decade is that there are many, many, many genes that may increase your risk slightly. It's not a guarantee that you'll get Parkinson's, and you could have someone in the family with Parkinson's and have one of these genetic mutations, and it is not a guarantee that you will develop it. But the more we understand about these different genetic risk factors and some environmental risk factors, it's getting us closer to understanding what's at the cause and how do we treat this.

Dr. Katy Peters: Parkinson's disease is in the media. And just knowing some of my own patients or some family members, it seems that there's either a variation of how much Parkinson's disease symptoms you have or how severe it is. Can you explain that to our audience?

Dr. Jori Fleisher: Absolutely. I think you spoke to two things, Katy, which is, one, there's an increasing recognition of Parkinson's to all of these folks who've come out publicly and shared their diagnosis. The courage that it takes to do that, just thank you because they're bringing attention and recognition, and it's leading to people recognizing their symptoms and getting diagnoses earlier. And that is huge, let alone raising money for research and advocacy and all that. So I think that's number one. But you're absolutely right. And something I tell my folks every day is when I'm making a new diagnosis of Parkinson's, I will tell people when you walk back out through our scary waiting room because no matter what flavor of neurologist's waiting room you're in, it's scary to be there, there is no one in that room today or any other time that you come to visit me whose story is yours. Your Parkinson's journey is going to be individual to you.

Dr. Katy Peters: I agree with you. I think Parkinson's will definitely have that opportunity to have individualized therapies based on the patient's symptoms, condition, genetic makeup, background, and also what they want because it is about the patient's journey. And since we're talking about treatment, can you sort of tell me what is the patient's initial journey? I know it's very individualized, but in general sort of, what kind of treatments are they seeing, and how are they being evaluated?

Dr. Jori Fleisher: That's a great question, and there's so much out there. So I think number one, know that Uncle Google does not know very much about Parkinson's. Uncle Google went to one year of a second-rate medical school and then dropped out when it comes to Parkinson's. So don't trust what you read online unless it's coming from Brain & Life right? But we you know for years and years we've been really lucky because we've had a medication called levodopa. Levodopa has been around really since the 1940s, 1950s. And once it gets to the brain, levodopa is dopamine. And actually, when you know I said Parkinson's is a neurodegenerative disease where these populations of brain cells die off, one of the big populations of brain cells that dies off are our dopamine producing factories. And so back in the fifties, scientists were able to create dopamine exactly what we're missing in a lab. And so we can give people dopamine in pill form, and it gets absorbed, it goes to the brain, it replaces some of what you're missing, which is great.

Dr. Jori Fleisher: And so to this day, it is both our safest and our most effective medication, which is actually saying something because in a lot of conditions we could start with here's the baby step. There is a lot of work going on, on different medications to be used that would be neuroprotective, which means something that you would take that doesn't necessarily improve your symptoms today, but is doing something on the molecular level in the brain underneath to slow down how quickly Parkinson's is progressing, which is really what we want is we want a cure. And short of a cure, we want something that's at least going to slow down progress. And so there's a lot of hope and a lot of work going on in all of those different realms. We also want a medication that's easier to take because levodopa is a little bit like taking an ibuprofen or an acetaminophen for a headache.

Dr. Jori Fleisher: It's there for a couple of hours, and then it's gone, and your brain is used to making 24/7 stable amounts of dopamine. So there are problems with taking something that's there for a couple of hours and then goes away. You need to take it again multiple times during the day, and that doesn't jive with most people's lives. And so another great option for some people is a surgery, which might sound counterintuitive, but there's something called deep brain stimulation. And it's like placing a pacemaker into the area of the brain that's affected by Parkinson's. It's like giving electrical medicine instead of chemical medicine. So it's not right for everyone, but it can be a really game-changing life-changing option for some people. So it's not what we reach for first, but it's something that helps us manage Parkinson's as time goes on.

Dr. Katy Peters: I got to interview Ed Begley Jr. You know he's a famous TV actor, famous for being a TV doctor about his Parkinson's diagnosis, and he is very well aware of the varying scope of Parkinson's, that some patients have a better prognosis than others, and he really credited his healthy lifestyle, which is rigorous physical activity and a healthy diet. Now, I know that you've done some research on this, so can you share any insights on sort of, not specifically what he was doing, but sort of the similar activities?

Dr. Jori Fleisher: Absolutely. So first just over here fan girling for Ed Begley Jr. And thank you for speaking with him and for his courage to speak out. But, yes, he's absolutely right. So this is the thing is there have been great studies that have looked at the benefits of exercise in Parkinson's. And what I tell my folks when I'm making a new diagnosis or at any point is that right now, today, I do not have a medication that slows down the course of the disease. Right, there's a lot in the pipeline. There's tons of reasons for hope, but today, can I write you a prescription for a pill that's going to slow it down? No. But I can write you a prescription for exercise. And there is a lot of evidence that exercise may slow down the course of your Parkinson's, no matter the flavor that you have. And people have looked at really big groups of folks with Parkinson's and found if you were always an athlete, if you were always active, your Parkinson's may progress more slowly.

Dr. Jori Fleisher: But if you have been more sedentary, a little bit more of a couch potato, not as active, and now you start right, if this is the motivator to say, "Okay, I really got to get going," you will change your course of Parkinson's than if you've always been sedentary or more inactive and you stay that way. So my point is, it is never too late. You can't change what happened before, but we can change tomorrow, and we can make a plan for it. And it's not to say you need to go out and be a marathon runner. That's not it at all. There's been tons of benefit shown in almost every form of exercise that's been studied. So when my folks ask me, "What is the best exercise for someone with Parkinson's?" the answer is the one that you will do.

Dr. Katy Peters: I completely agree. I tell my patients the same thing.

Dr. Jori Fleisher: I joke with people and I'm like, "Listen, I really like to cycle. I do not like to run. So if I'm running, you should run too. There might be a bear." There is no one right exercise, but exercise is the right thing. There's benefit to resistance exercises, strength training. There's benefit that's been shown with yoga. There's a ton of great work that's been done in dance and lots of different forms of dance. So that is a great option. Swimming, it's really great for people with Parkinson's. Really, we want things that engage the whole body and that make you make big movements. Parkinson's wants to make you small, it wants to stoop you over. It wants to make your movements small, and we want to fight back against that by really stretching out big, taking these large amplitude movements.

Dr. Jori Fleisher: So you had mentioned we did a study a couple of years ago. We did two studies actually looking at karate for Parkinson's, and it might sound like a crazy idea. When I initially when this was brought to me and it was brought to me by one of my patients, I thought like, "I don't know if that's going to work. Wouldn't people fall? Wouldn't that be dangerous?" And it turned out folks loved it, and we did see good benefit, but is karate the answer?

Dr. Katy Peters: That is so awesome.

Dr. Jori Fleisher: Right? And the cool thing was people were like, "I'm worried about falling." And the best part was that sensei as the teacher said, "Well, yeah, we're going to teach you how to fall, and we're going to teach you how to get up."

Dr. Katy Peters: Well, I think this is just a great message for all of our patients, all of our Brain & Life listeners. I'm going to get out there and do those big movements just like Jori said so we can keep our joints going. Now, it's wonderful to learn about everything that Ed has done with his exercise. He does mention several other complementary and alternative therapies that he mentioned in his interview. I just want to make sure they have a little more information from our expert about these therapies. So Dr. Fleisher, can you sort of comment on these complementary integrative therapies that he mentioned?

Dr. Jori Fleisher: So Ed mentioned three different alternative therapies; hyperbaric oxygen therapy, glutathione, and NAD. And these are really commonly discussed online. I get asked about these in clinic all the time, so I'm really glad that he brought them up. Let's take them one at a time. First, let's talk about hyperbaric oxygen therapy. So unfortunately right now there is not a lot of rigorous scientific research to support its safety and efficacy in people with Parkinson's disease, so not really on the table. Next up, glutathione and NAD. So, it's easy to see why people are drawn to these therapies. Biologically, these are molecules that are connected to pathways that malfunction in Parkinson's disease. And so it makes sense. It seems logical that supplementing these missing chemicals should help. Well, in animal models and in studies where people know that they're getting the treatment, we do often see benefits.

Dr. Jori Fleisher: But when we study these treatments in a rigorous scientific way such as through randomized placebo-controlled studies, we unfortunately find no or very minimal difference. Katy, in the case of glutathione, it's been studied in various forms; as a pill, as an IV medication, even as an intranasal spray, but still without real noticeable benefit. And with NAD, the challenge may be finding the right dose that leads to a clinical benefit. We don't want to see just, well, here's this blood level that changed or we see a little bit of a change in an MRI, but if that doesn't translate into the person feeling or functioning better, that's what we want to see.

Dr. Jori Fleisher: So currently, neither glutathione, NAD or hyperbaric oxygen are accepted or recommended treatments for Parkinson's disease in any of the major guidelines. So what should you do? Keep the lines of communication open with your neurologist. Talk about the best therapies for you and your condition. And remember, lots of research is underway for these and many other therapies. And for more in-depth information, we've included some references in the podcast description, so stay tuned for more updates. Know that lots of research is going on, and remember that knowledge is power.

Dr. Katy Peters: I totally agree with you. Knowledge is power and talk with your neurology provider. They're there to help you through this journey and to be a guidepost and to give you more information. You mentioned the things that patients can do. This is an illness not just of the patient, but also of their loved ones. And you do research in that area too in, how do you engage caregivers and care partners for patients with Parkinson's disease. Can you just share some tips for our caregivers?

Dr. Jori Fleisher: You have to take care of yourself. And I know this is said everywhere, and this silly cliche about put your oxygen mask on yourself before you put it on others, I have people that roll their eyes, but it's so true. This is not a brief change. This is something that affects the person with Parkinson's, but also their entire family, their whole sphere, and it's going to be there for the rest of their lives. And hopefully, that is a long, long, long time, which also means that's a long, long, long time that someone, if you're the significant other, if you're a partner, that includes navigating changes in that role. You may be a wife one moment and caregiver another moment and advocate another moment and a healthcare note taker the next moment. So taking care of yourself, finding ways to fill your own cup, finding ways to take time for yourself, and finding ways to connect with other care partners is critical.

Dr. Jori Fleisher: So whether it's Parkinson's Foundation, American Parkinson's Disease Association, Davis Finney Foundation, there are so many wonderful organizations out there, Michael J. Fox Foundation, there are so many organizations. And so you can connect with someone who is in a similar situation to you where you don't have to explain yourself, you don't have to apologize, you don't have to ask forgiveness if your call gets interrupted or you have to step away from the Zoom support group. They will get it because they're in a similar situation.

Dr. Jori Fleisher: And just finding that community that feels right, that gets you, can be so validating and give people the strength that they need. When I'm making a diagnosis, I always tell folks, "You never asked to be in the Parkinson's community, but you're here, and it is the most amazing community that you never knew existed." Find your people in this community. There are so many people who have either gotten the diagnosis or their loved one has gotten the diagnosis, and they have used that diagnosis. Once they go through getting used to it, going through the acceptance process, all of those stages of grief that can happen with getting a life-changing diagnosis, they come through the other side, whether that's weeks or months later, and they use this change as a positive inflection point in their life.

Dr. Jori Fleisher: So know that you're not alone. Whether you're the person living with the diagnosis or the care partner or family, find your people. Take care of yourself.

Dr. Katy Peters: I love it. Find your people and big movements. That's what I've learned today. Big movements, and find your people. So Dr. Fleisher, this has been first of all so much fun, and thank you for sharing your insights, your expertise with us on Parkinson's Disease.

Dr. Jori Fleisher: Oh, well, Katy, thank you for being my people. And Brain & Life listeners, thank you for being my people. It's such a pleasure.

Dr. Katy Peters: Oh, Jori, you're awesome. And, again, thank you to our Brain & Life podcast listeners, I'm wishing all of you brain wellness.

Dr. Daniel Correa: Thank you again for joining us today on The Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain & Life en español.

Dr. Katy Peters: Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainlife.org and leave us a message at 612-928-6206.

Dr. Daniel Correa: You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Katy Peters: And Dr. Katy Peters joining you from Durham, North Carolina and online @KatyPetersMDPhD.

Dr. Daniel Correa: Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Katy Peters: We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Daniel Correa: Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life Podcast. See you next week.

Ed Begley Jr. on Utilizing a Healthy Lifestyle to Thrive with Parkinson’s Disease

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