Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease presents many challenges, both for the people with PD and for their care partners. Problems can be physical or emotional, and intimacy and sexuality have aspects of both. In this episode, we focus on problems that care partners experience concerning sexuality, and for which they call the Parkinson's Foundation helpline. Social worker Anna Moreno, a senior information specialist at the foundation, highlights some of the more common questions that she receives, and her job entails helping callers find the right resources. Gila Bronner, a certified sex therapist and supervisor of the sex therapy services at the Tel Aviv Sourasky Medical Center in Israel, responds to these questions with insight into the problems and some approaches to solving them.

Dan Keller 1:39 Anna, you are a Parkinson's Foundation helpline specialist. What kind of questions do you get concerning sexuality, keeping in mind that you yourself are not a therapist?

Anna Moreno 1:54 We get a lot of questions, so one thing we do is view people and help them find therapists through the American Association of Sexuality Educators, Counselors, and Therapists. Some of the questions we get are, as a care partner, "How do I explain to my husband that I'm just too tired to have sex because I'm always caregiving?" And people always ask, too, "I'm an older woman, so I just don't really have a libido anymore."

Gila Bronner 2:27 Usually, the idea of lower sexual desire, or what I call a sexual desire discrepancy, or gap—one of the reasons is the burden. I mean, the partner who lives with Parkinson's, who doesn't have Parkinson's, but lives with it, is very tired, and the woman who is asking it probably is doing a lot of chores, and she's really exhausted. So, one of the reasons for the gap in the desire is because of being tired, but the other reason is that the dopaminergic treatment for Parkinson's restores desire for the patient and does not restore any desire by the partner, so we have a gap now. Sometimes I think instead of saying "I don't want sex, I don't have desire," maybe we have to teach care partners to say, "What do you need?" For example, "At the end of the day I need a foot massage or a shoulder massage, can you massage my shoulder?" and teach the partners that not every touch should lead into sexual erotic activity. And if they do that a few days along the week, just touching, then I'm probably quite sure that the woman in this question will have a desire to be more close to her partner, to her husband.

Dan Keller 4:08 And is there an aspect here of just being older and having diminished sex drive?

Gila Bronner 4:15 Yeah, people lose the sexual desire to have erotic activity, but one of the reasons that they lose it is because they stop touching just for the touch. Because most of us, as a person, at any age, we need to be hugged, and we need to be touched, and we need to feel excited, and to feel loved, and not only to have the desire to have intercourse or get aroused, get orgasmic. The moment we lose the intimate touching part, it reduces also by many times the desire to have sex, because when you look at studies and you inquire older people—I mean people that are in their 60s, 70s, 80s, and even 90s—you ask them, they say, "Yes, we adapt our intimate activity to what we like and what we can, and we don't always need to have the erotic sexual activity."

Dan Keller 5:23 Anna, what else do you hear from people calling into the helpline?

Anna Moreno 5:28 One interesting question that we get a lot is that people say, "My husband..." and on the helpline we've only had opposite-sex questions. We haven't heard from same-sex people, but one of the questions is, "My husband experiences delayed orgasm because of medication, but I cannot just keep going. It gets uncomfortable for me. What do I do?"

Gila Bronner 5:54 In Parkinson's, some of the medications, especially those which are for treating anxiety or depression, may disturb the ability to reach orgasm, but not only the medication. We have to remember that Parkinson's is a motor symptom disease. It means that sometimes people choose positions where they cannot hold and where they do not feel steady enough, and they can't do constant movements with concentration that are needed for orgasm. And some people are choosing the timing of sexual activity when they are too tired, not concentrated. Sometimes it's too late during the night. So what usually we do is, when I have a couple like this, I will usually ask the woman, "How long is it okay for you to have a visit in your vagina, I mean of your husband's penis?" and many women would say, "Look, two minutes, three minutes, four minutes." Okay, let's think of, you know, once we had a special clock, we called it a sand clock for boiling eggs. So I'm saying, yeah, yeah, we should think about something like this, and when it is fine with you, okay with you, you can't have it anymore, ask him to go out, whether he reached orgasm or not. Because the deterioration of your interest in sex, because he's staying there too long, it's much worse than stopping the sexual activity. Now we should think, why does it become—if it is a medication, we can ask maybe the psychiatrist to prescribe them, or another physician, and we can ask if we can change it, or maybe we can lower the dose, or maybe we can do something like once a week, or once in two weeks. We call it a "weekend vacation." Weekend vacation means that we stop them, for example, the antidepressant for 48 hours, and if we get an okay on the medical side, then sometimes during this break, at the end of this break, if the man will have sexual activity, he can come. But on the other hand, we have older people, meaning from the age 60 and on, who all have problems in coming and reaching orgasm, even if they have no Parkinson's and no medication. This is one of the changes which happen when we grow older, so it means that you can visit the vagina as long as it's okay for both of you, then go out and think of another way of getting aroused or getting excited more effectively, for example, manual stimulation, and get an orgasm in a different way. And this is what usually older people do when they have problems with their orgasm. So it means that we need a little more education for the people and giving them options and seeing what is the best solution in each case.

Dan Keller 9:21 Anna, what's another question that you've been getting commonly on the helpline?

Anna Moreno 9:27 Sure, a lot of men have called us feeling very upset about—they want to know why their wife doesn't want to have sex with them as often as before, and there are many reasons, I'm sure.

Gila Bronner 9:43 When we think of this question, there are many options. One of the options is that, unfortunately, in the whole world, not only in the world of Parkinson's, and not only in this age, but in the whole world, many couples are having sex which is more satisfying for men without listening to the needs of women. So sometimes what we do is we need to teach them, and it comes a moment when the woman says "enough is enough." Many years, it's like if we are thinking of eating something for many years: "I was eating your sandwich, I don't like the sandwich, I need the sandwich to be differently made, and now I don't want any more of this sandwich." Okay, so sometimes this is the reason. Many times in Parkinson's, it's really the burden and the need to serve all the time, so you don't want to serve sexually, and the best thing is when I can teach these men really to pleasure the woman without touching the erotic area. And the nice thing in the female body is that women can enjoy very much, have really a lot of pleasure, and feel loved, and feel also love to the partner when they are touched in other areas of the body, for example, pleasuring the back or the neck or the head—it depends, you know, everyone is a little different—just hugging them, just lying close together with clothes, without clothes, but without trying to reach to the erotic part. But men basically, many men were educated that if you touch your woman and you touch her, you have to do something, you have a job, and if you don't do your job, you are not a man. So, we have this problem. Then we have a lot of specific problems in Parkinson's, because men change—the men with Parkinson's change sometimes cognitively, this man changed his behavior, changed, sometimes communication changed, because, you know, problems speaking. Sometimes the appearance changed, the way the partner walks or the way the skin looks, so sometimes it's really issues of attractiveness. So there are many reasons why women do not want to have sex. I can share with you that in a workshop that I have done with men with Parkinson's, we had a group of 40 men with Parkinson's, and they were talking quite openly, quite freely, and many of them said, "I feel that my woman is disgusted by me," or "I feel that she's really reluctant to be close to me." And yeah, it's very sad, and we can think together what we can do. It's not easy. We have to ask the men and women, how can you leave the sex away, the erotic sex, and try to be friends first, try to listen to each other's needs, and then we can rehabilitate the erotic part of their life.

Dan Keller 12:51 Anna, why don't you give me one more of the questions that you get commonly asked?

Anna Moreno 12:57 Sure, so one of them is, "My husband has a sex addiction. How do we manage that? But also, how do I manage my anger about that?"

Gila Bronner 13:07 If you talk about sexual addiction in Parkinson's, this is a real problem. It's a big one, and it is part of the impulse control disorders. We know that because of the dopaminergic treatment, some of the men—it depends on the study, about something between 10 to 15% of the people with Parkinson's, mainly men—will have some kind of addiction. It can be gambling, it can be shopping, it could be eating, it can be walking about, wandering, but it can be also sexual. But not every sexual behavior which looks like sexual addiction is really sex addiction. I want to give you an example from my patients. For example, I had a patient, he was 50 years old, young, he had Parkinson's, and every day he tried to have sex with his wife, but he had problems with his erection, so he did not succeed. So he tried on Sunday and he didn't succeed. He tried on Monday, he didn't succeed. He tried on Tuesday, he didn't succeed, and like that he was trying all the time. He went to the doctor, he asked for some kind of medication, he got one of the erection pills, but the doctor did not explain to him that in Parkinson's, because of absorption problems and slowness of the gastrointestinal system, it takes sometimes double time for the absorption of the pill and not one hour, as they tell every patient. So my patients with Parkinson's had to wait between two to three hours until the pill was in the blood in order to be effective. So they try the pill, and they also do not succeed, so they try another pill and another pill, and after a month the woman will come to the doctor and say, "My husband has a sex addiction." And I can tell you truly, he doesn't have a sex addiction; he has a sexual problem or sexual dysfunction which is not correctly treated. Okay, but we do have a problem of impulse control disorders, which we call hypersexuality or compulsive sexual behavior, meaning that there is a behavior that did not exist before, and it is really bad. Actually, we have to take and recruit all the multidisciplinary team which we can. In my department, this is what I do. I talk to the nurse, I talk to the social worker, to the physiotherapist, to the occupational therapist, speech therapist, to the neurologist, to the psychiatrist, to everyone. Sometimes we even think together what we can do, because in these cases we have to adjust medication. Sometimes the neurologist will choose to use one of the advanced treatment devices, like the DBS, the brain stimulation surgery, or sometimes the intestinal gel, and we have to educate. This is what I usually do, me or the social worker or the psychologist, we educate the couple because a man who has a sex addiction is at risk, his sexual health is at risk—he is at risk of getting sexually transmitted diseases, of getting AIDS, of being abused or abusing others. So we have to really treat a real sex addiction from all the aspects that we can, but we have to differentiate it from a real sexual dysfunction that has to be treated in the usual intervention for sexual problems, which is really different. Educating patients about that releases their stress, and the anxiety is reduced, and sometimes reducing the anxiety is alleviating the problem and making it quieter. We did not solve it, but the feeling, the psychological atmosphere, is a little different.

Dan Keller 17:21 Gila, let me get back to something Anna said earlier, that most of the calls she gets on the helpline, or all of them, are from heterosexual couples. Do you ever see same-sex couples with Parkinson's disease, either male-male or female-female, who come in with problems relating to sex? And are the answers essentially similar to what you've proposed for heterosexual couples?

Gila Bronner 17:51 Unfortunately, very few LGBTQ persons with Parkinson's come for sexual counseling; they feel it's a minority in a minority in a minority. But interestingly, in the last year, I was one of the teaching personnel in a special project which was done in Boston with people from the gay, lesbian, queer, and transgender community with Parkinson's, and I had a workshop with this group. And then actually at the World Parkinson Congress, which will be in Barcelona 2023, I am presenting a pilot which we plan to do on interviewing people with Parkinson's who are part of this community. Now, if you ask, most of the sexual advice will be very similar to the heterosexual community with Parkinson's, but there are a few specific points which are very specific to men who are homosexual, to women who are lesbian, and we have to refer to them. I'll just give you an example. For example, in the community of homosexual men—I mean the normal community, not something special—the attraction, the physical attraction, is very important. Any changes in Parkinson's, erections are very important. You are counted by your erection, though this is really a problem, because the frequency of erectile dysfunction among people with Parkinson's reaches much higher than 50%—sometimes 60, 70, 80% in many studies all over the world. So it's a problem. Then we have problems with the gastric system sometimes, for example, constipation. Some of the people who are homosexuals—some of them, not all of them, but some of them—have anal sex, and they might have specific problems because of the contraction of the muscles in the pelvic floor area. So there are specific issues, but generally most of them suffer from everything. And in heterosexual couples, in many cases, women will not leave the husband because he has Parkinson's—I mean, they adapt or separate—but homosexuals are usually not married, and many lesbians are not married, and also other people from the LGBTQ community, so it's very easy to break relationships, so sometimes they suffer much more from loneliness, and we have to find other solutions for them.

Dan Keller 20:50 Just to wrap up, overall, when should a couple seek out a psychologist, a marriage counselor, or sex therapist? Are there any triggering events, or is it just a long ongoing process by which they would finally come to a professional?

Gila Bronner 21:09 I would love that every couple, or every person who is diagnosed with Parkinson's at a very early age, will come for just one talk to a sex therapist, just to learn: "How do I arrange and get ready for the changes that are coming?" It's like many neurologists today, when they diagnose a person, they say, "Look, at the moment, the only intervention I would like to give you is start to do more sports, invest in more physical activity." Because what I need is that people will learn how to communicate better. Many people do not communicate freely when it has to do with intimate issues, so I need better communication, because later the problems with communication will be piled by so many other problems that it is really difficult. And then thinking about roles, how to change the roles—this can be done also by a couple therapist or by a psychologist. So some of the things can be done by psychologists and couple therapists; there are specific issues that sex therapy still deals with because other professions do not talk very openly and freely about sexual and erotic issues. So I think that people should use it, and it's not a long treatment, just really a counseling session, that's all.

Dan Keller 22:41 Anna, is there information on the Parkinson's Foundation website about how to find a sex therapist?

Anna Moreno 22:50 Unfortunately, no. But if they call the helpline at 1-800-473-4636, we can help them find someone.

Dan Keller 23:02 Very good, excellent information. I thank both of you. And this has been a discussion that I think people might shy away from, but it's very necessary. So, thank you very much, Anna.

Gila Bronner 23:15 Thank you, Anna, for the questions. Thank you, Gila and Dan.

Dan Keller 23:28 You can find several helpful blog posts on our website at parkinson.org. Just search for the word "intimacy." For ones specifically by Gila, search for her last name, Bronner, on parkinson.org, that's B-R-O-N-N-E-R. You can also listen to a previous podcast with Gila called Navigating Sexuality and Intimacy with PD. For a fact sheet on intimacy and PD, go to our library at parkinson.org/library and search for the word "intimacy," where you will also see a link to Gila's earlier podcast. Gila says that in the United States there are great professional organizations that can offer help in finding qualified sex therapists. One, as Anna mentioned at the beginning of our discussion, is the American Association of Sexuality Educators, Counselors, and Therapists, or AASECT for short. It lists sex therapists and sex educators by US state, as well as in other countries. Just go to aasect.org. SIECUS, originally the Sex Information and Education Council of the United States, deals more with sex education and social change. It can be found at siecus.org. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Gila Bronner, MPH, MSW is a senior sex therapist at Tel-Aviv Sourasky Medical Center in Israel and is an expert in sexual-neuro-rehabilitation (Parkinson’s disease, Multiple Sclerosis, Stroke, Dementia). She has published over 30 scientific papers, 13 chapters in neurological books, and sex-education books for children, adolescents and elders. Her life goal was dedicated to sexual health promotion, by training health care professionals in Israel and all over the world (Europe, USA, Canada, Asia and Australia). She is a member of the MDS Task Force on Wellness and of the MDS Health Professional leaders group.

Anna Moreno, MSW received a Bachelors of Arts at Louisiana State University and a Master of Social Work from Washington University in St. Louis. She is a Senior Parkinson Foundation Information Specialist and has had the honor of speaking with and answering questions from people with Parkinson's, care partners, family, friends and health care professionals on the Parkinson's Foundation Helpline for 13 years. She has also worked on developing educational materials and webinars. She previously worked for the National Cancer Institute Helpline.

Dr. James Beck 00:00:00
Depression and anxiety affect up to 50% of people living with Parkinson's disease, while up to 30% of people with Parkinson's report changes in their memory and thinking ability.

Hi, I'm James Beck, Chief Scientific Officer of the Parkinson's Foundation. Each person's experience with Parkinson's disease is unique, as are their symptoms and management strategies. Learning how to navigate symptoms can take time, but ultimately helps empower you to live better with Parkinson's. Today, I'm going to discuss common movement and non-movement symptoms of Parkinson's disease.

Parkinson's disease impacts the brain's ability to create the chemical called dopamine. This feel-good chemical has a big job; it helps the body move and stay coordinated. When the brain cannot produce enough dopamine, the body can respond with a tremor, balance issues, or slow movements, which all could be early signs of Parkinson's disease.

There's no single test or scan for Parkinson's disease, but there are three hallmark symptoms that can help doctors make a diagnosis. Tremor is often the first movement symptom of Parkinson's. About 70 to 90% of people with Parkinson's experience a tremor at some point in their disease. Tremor tends to occur in their hands, but it can also appear in other parts of the body, including the lower lip, the jaw, or leg.

Bradykinesia, or slowness of movement, is another symptom of Parkinson's. In addition to moving slowly, one may experience smaller movements, or movements of reduced amplitude. This can mean one arm swinging less when walking or handwriting that gets smaller as you continue to write. Rigidity is another defining symptom of Parkinson's. This symptom is experienced as a stiffness of the arms or legs that can occur on one or both sides of the body and contribute to a decreased range of motion. Parkinson's disease affects everyone differently. Though Parkinson's is diagnosed based on these primary movement symptoms, many other symptoms are associated with PD and may develop over time.

Just like movement symptoms, non-movement symptoms are caused by an imbalance in the brain of not being able to produce enough dopamine. This chemical helps regulate our mood, and without enough of it and other chemicals, people with Parkinson's often develop anxiety, depression and a myriad of other symptoms. Parkinson's disease is more than a tremor or trouble walking. Most people with Parkinson's also develop non-movement symptoms. Certain non-movement symptoms such as the loss of smell, constipation and sleep disorders can occur years before a Parkinson's diagnosis. Some of the earliest signs of Parkinson's are found in the enteric nervous system, which are the nerve cells throughout the gut. As many as 80% of people with Parkinson's experience gastrointestinal issues.

Dr. James Beck 00:02:41
Parkinson's disease can also affect your mental health. Depression and anxiety affect up to 50% of people living with Parkinson's disease, while up to 30% of people with Parkinson's report changes in their memory and thinking ability. There are many other non-movement symptoms of Parkinson's disease, including dizziness and vertigo. Your doctor can help determine whether the symptoms you are experiencing are related to Parkinson's.

Since most Parkinson's symptoms are caused by a lack of dopamine in the brain, many Parkinson's drugs are aimed at either temporarily replacing dopamine or mimicking the action of dopamine. These types of drugs are called dopaminergic medications. They generally help reduce muscle rigidity, improve speed and coordination in movement, and lessen tremor. Keep in mind that medication is only part of the overall treatment plan for combating PD. Exercise and complementary therapies are evidence-based in their ability to help manage symptoms. Talk to your doctor about medications and complementary therapies.

In addition to medications, exercise should be part of every Parkinson's treatment plan. Research shows that exercise and physical activity not only help maintain and improve mobility, flexibility, and balance, but also ease non-motor symptoms such as depression or constipation. Establishing early exercise habits is essential to overall disease management. Our research has shown that people with Parkinson's who exercise for at least two and a half hours per week experience a slowed decline in quality of life.

You can also assemble a team of allied health professionals who can help manage your symptoms at every stage. Physical therapists, occupational therapists, and speech-language pathologists who are skilled in Parkinson's disease can keep you moving well and communicating with the people in your life.

Research is how we'll cure Parkinson's disease. There are researchers who dedicate their careers to studying the brain and how it's related to movement disorders. One of our jobs here at the Parkinson's Foundation is to fund the cutting-edge research that keeps our scientists in our field. For instance, one of our research grantees is studying how medication can target a more specific region in the brain to make medication more effective in managing symptoms. Another researcher is developing a new test that can measure disease progression without waiting for symptoms to worsen. Research gives us hope and directly helps people live better lives with Parkinson's disease.

To learn more about Parkinson's disease symptoms and how to manage them, visit Parkinson.org/Symptoms.

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Today we explore the relationship between Parkinson's disease and artistic creativity. Our guest, Professor Bas Bloem of Radboud University Medical Center in Nijmegen, the Netherlands, co-authored an article in the magazine American Scientist, titled "What Parkinson's Reveals About the Artistic Spark." He's the director of the Parkinson's Foundation Center of Excellence at that university. The article noted that in case reports published over the past two decades, doctors have written that they've seen an intriguing relationship between Parkinson's and art. Bas says his own studies support new theories for why and how people with PD may experience an increased desire and even ability to create art in its various forms. Central to these concepts is the role of dopamine, which is produced deep in the brain and radiates out through neural pathways to several other areas of the brain, along with its many functions on movement, behavior, mood, attention, and learning. It has a major role in reward-seeking behaviors, thus its nickname as the happiness hormone. As Bas describes in this episode, it may also be a creativity hormone. For many centuries, medicine has often been a subject in art, but looking from another perspective, I first asked Bas whether art somehow enhances medicine.

Prof. Bas Bloem 2:22 Yeah, that's a good question. So many people would think that at first sight these are two completely separate worlds. Doctors and other healthcare professionals use protocols which are bound by regulation, whereas artists are free and creative, but in fact, if you take a closer look, those two worlds are actually much closer intertwined than you would think at first sight, and we can elaborate further on in this interview in more detail, but art can provide hope to patients. Art can serve as a new therapy. Art can act as a diagnostic tool to make an early diagnosis, for example, people with Parkinson's. Art can be used for educating healthcare professionals to make them better doctors, so many links.

Dan Keller 3:08 For the person with Parkinson's, in particular, what can art do for them? And how?

Prof. Bas Bloem 3:16 What I've seen in my clinic on a very regular basis is that art offers hope, and it offers a way for people to express themselves, and to show the world that they are so much more than their disease. As you know, communication becomes more difficult, speech is impaired, gait becomes difficult, so the world becomes smaller and smaller, and art is a wonderful way of expressing yourself. So in that regard, I have many patients who use all sorts of art, whether this be music or painting or poetry, to express themselves. What is really interesting and fascinating is that there is a mysterious sort of link between art and Parkinson's through dopamine. Dopamine is the chemical substance in the brain that makes us creative, and we have shown in a number of studies that people who choose to become artists early on in life, and I mean in their 20s, have a lower risk of developing Parkinson's later on. Now you could interpret this as saying, oh, perhaps art is protective, that's a remote possibility, but I actually think that artists have a lot of dopamine, which makes them creative, and the same high level of dopamine, which turns you into an artist, protects you from dropping below a critical threshold in the future that is needed to elicit Parkinson's symptoms, so artists seem to be protected against developing Parkinson's. But the interesting thing is that when you treat people with Parkinson's with dopaminergic therapy to treat their motor symptoms, some people who have never been artists in their life now suddenly become very creative and start to produce the most magnificent art. There are examples of painters, poetry, sculpturing, all emerging under the influence of dopaminergic medication, just to show how dopamine is so critical for creativity, and it almost becomes an existential question for these people, some of whom wonder, "Am I the artist or is it the chemical substance that turns me into an artist?" And I tend to think that these people would have been artists anyway if they hadn't developed Parkinson's, which deprived them of their dopamine, but I can understand how that question arises, you know, am I a chemical artist or am I a true, you know, genuine artist? I think the latter is true, but I understand why people are asking this question.

Dan Keller 5:50 But the levels of dopamine they have when they're being treated are probably higher than the ones they lived with before they had Parkinson's, the natural levels, so is this sort of a pharmacologic effect?

Prof. Bas Bloem 6:05 Well, you know, in many ways the dopaminergic therapy definitely is not sufficient to suppress all the motor symptoms, so whatever dopaminergic drugs, or for that matter, deep brain stimulation that we're prescribing is not sufficient to fully suppress the motor symptoms, which are also resulting from a lack of dopamine. What is actually happening is the brain has multiple parallel dopaminergic circuitries, one is for the motor symptom, the other one is the reward circuitry, and if your dopamine level is very low in your motor circuitry, we give people dopaminergic therapy to replenish that vessel, but these vessels are communicating, so when you replenish the motor circuitry, it automatically also spills over into the reward circuitry, and if that was still rather full, then this now overflows, and you're right, then it becomes sort of a chemically induced creativity. The question is, and remains, because this is not happening in everyone, whether these people would not have been artists by themselves if Parkinson's hadn't been around.

Dan Keller 7:17 If someone has deep brain stimulation and can reduce or eliminate their levodopa, do they lose the creativity or does the deep brain stimulation also feed into the reward systems?

Prof. Bas Bloem 7:33 Now that's an excellent question. And so, what we see is the following: under the influence of dopaminergic therapy, some people develop creativity and become artists. In others, who were already creative prior to Parkinson's, their artistic expressions may change, and in some—and this is also important to mention—is the emergence of addictive behavior. Creativity and addiction are all mediated through dopamine, so some people develop compulsions and start to paint, you know, throughout the day, or develop other sorts of compulsions, and what we know is that when you treat these people with deep brain stimulation, depending on which type of surgery, but if we talk about, for example, stimulation of the subthalamic nucleus, that allows, in fact, it requires you to markedly reduce the dopaminergic medication, so this spillover into the reward circuitry is diminished. So we do see that, for example, addictive behavior can diminish following DBS. We've also seen how art returns from chaotic under the influence of dopaminergic medication to more structured art following DBS. So, yes, deep brain stimulation can have an effect on the artistic expressions.

Dan Keller 8:53 Are there any aspects or characteristics of paintings or other forms of art that are particularly characteristic of people with Parkinson's?

Prof. Bas Bloem 9:04 So, what is interesting is that Salvador Dalí, the famous painter, he actually developed Parkinson's disease, and apparently each painter has what is termed a certain fractal, and fractals are the unique signatures of that individual artist, and people have looked at how Dalí's art developed over the years, and they were able to detect changes in his fractal, which you would otherwise not expect in the years leading up to his ultimate Parkinson's disease. So the disease was affecting his artistic expressions even before doctors could make the diagnosis. What was your original question?

Dan Keller 9:46 Whether there are characteristics of art in color or form or anything that are particular to people with Parkinson's.

Prof. Bas Bloem 9:58 So apparently each artist has his or her own fractal, own unique signature, and what we have seen is that people who developed Parkinson's, who were artists prior to Parkinson's, had more abstract art, and it changed to realism. These are anecdotes, by the way. This is not evidence in large series, but that's an example of how the artistic expression changed, and the other patient that I just mentioned, who under the influence changed from very chaotic and wild paintings again into more structured paintings, so it appears that perhaps a lack of dopamine leads to a more structured form of art, whereas under the influence of dopamine, wilder, more abstract expressions appear to be happening. You need large case series to show that on a larger scale. I'm proud to say that, together with the University of Vienna, Matthew Pelowski, and Blanca Spee, we obtained a large grant to further study this relationship between dopamine and Parkinson's on the one hand and art on the other hand. So we're going to look at larger case series of people with Parkinson's, how the disease and the medication affected their artistic expressions on a larger scale. We're also going to give dopaminergic pills to healthy people and put them in a scanner, in a functional MRI, to see how their perception and also their creation of art changes under the influence of dopaminergic medication. So, if we were to redo this interview, say in two years' time, I'll give you some more detailed information about this very interesting question.

Dan Keller 11:37 I think there's a center for arts and medicine at the University of Florida, is that a good model? Should medical facilities have or build art studios or music studios, or at least run programs?

Prof. Bas Bloem 11:51 I absolutely think so, for at least two reasons. Part of that study that I mentioned with Blanca Spee and Matthew Pelowski is that we intend to do a randomized clinical trial where we want to prove that engaging in regular art acts as a real therapy that keeps people happier, healthier, and out of the hospital. So, what we're going to do is ask people with Parkinson's who are not spontaneously creative or not regularly engaging in art is to allocate them to either usual care, the control group, which means no art, or you're being allocated to a group of artists who sits down with each participant in the study and says, "Do you like painting?" "No." "Do you like music?" "No." "Do you like sculpting?" "Ah, sculpturing!" and the next one picks music, and the third one picks painting, and we want to show that engaging in art guided by artists for at least a year keeps people healthier and out of the hospital, and I just need to show it and prove it. I'm already convinced about the outcome, but if we come with this evidence, I think the time has come that we should have art centers as part of our overall medical armamentarium that we offer to patients. Whether these art centers should be based in the hospital is another question. One reason to place it in the hospital is that the second reason why I think art is so important is for educational purposes. My university has done a brilliant experiment led by Jeroen de Kloet, a philosopher at our center, where young medical students and interns were allocated to artists, and they had to examine art together with artists, and I'll just give you one really, really nice example. They were shown the famous painting by the Dutch painter Van Gogh, The Potato Eaters. I'm sure many listeners will have seen it, and the students were asked to describe the painting, and what the students consistently did, all of them, is zoom in on details. "I see a woman with a big nose. I see a lantern dangling from the ceiling." None of the students said, "I see a family in a barn eating potatoes." And what the artists were teaching these students is to not just zoom in, which is what we've been taught to do as part of medical school, but to also zoom out and see the whole picture. In medical school, we learn how to focus on the tremor, but we forget that the tremor is taking place in Mr. Johnson, who has a life, who is a person, who is an individual. So, artists teach you how to zoom out, and they also teach you how to look with an unbiased opinion. And I thought that was just a beautiful experiment. And I think many medical schools in the world are now beginning to learn about the importance of art for the medical curriculum, so that's why maybe it should be based in the hospital.

Dan Keller 15:01 You mentioned using functional MRI. I assume this will give you a chance to look at blood flow and oxygenation and things like that, but you recently published a paper showing actual physical changes in the brain from exercise. Would you ever intend to try to do that in parallel using art instead of exercise?

Prof. Bas Bloem 15:24 That is a very interesting question. So, I'd say one of the nicest papers I wrote, or one of the nicest studies I was able to participate in, was this study where we used regular aerobic exercise to improve symptoms of Parkinson's, but we did scans before and after exercise, showing that we stopped atrophy from happening, and we also showed that the brain started to make new functional connections between the diseased basal ganglia and the cortex. What drives exercise? We don't know. Is it the aerobic component, is it something else? What we do know from a number of observations in the medical world, even extending beyond Parkinson's, is this "use it or lose it" concept. So we know that regularly engaging in cognitive activities helps to stop cognitive decline over time, and it might well be that regularly engaging in art might help to somehow slow down the process of neurodegeneration in Parkinson's. That needs to be demonstrated. I'm not entirely sure, but I think it's not impossible. In fact, we showed in two studies that artists, you know, people who choose to become artists at the age of 20, have a lower risk of developing Parkinson's, and who knows, regularly engaging in art perhaps may exert some neuroprotective effect by itself.

Dan Keller 16:44 One of the potential side effects of dopamine is lack of impulse control. Do you think a little bit of a lack of impulse control is a good thing? It liberates someone to be more creative and outgoing.

Prof. Bas Bloem 16:59 This is a vexing question, because people with these impulse control disorders often don't see the problem themselves, so creativity and addiction are on the same spectrum. As a medical professional, I would never say that a bit of impulse control loss is a good thing, because I've seen horrible situations in families where people started to gamble, got addicted to sex, got addicted to dopaminergic medication, leading to truly dreadful situations in the family. Yes, people who use dopaminergic therapy often feel more liberated themselves and often don't see the problem. I literally had a patient in my clinic who said, "Well, I just bought a red Ferrari this morning because I already had a green one," and didn't see the problem. He didn't have the money for it and didn't see the problem. I've seen elderly men dropping their keys on purpose on the floor so they could look under the skirts of younger women, which was never their, you know, normal behavior—it's never normal behavior, by the way—but it really led to these deleterious situations. So, I would never say that a lack of impulse control is a good thing, but it's definitely perceived by people as sometimes a welcome development, which is in fact why people get addicted to drugs. You know, drugs like cocaine and amphetamine release dopamine from the brain, which is why they're so addictive.

Dan Keller 18:25 Yeah, I was thinking more in terms of just disinhibition. Somebody says, "Well, I could never paint because, you know, I don't have a thought," or the teacher may say, "Just paint anything," and they go, "Well, I don't know what to paint," but you know, they have a little bit of inhibition, maybe a little bit of impulsiveness there would be a plus.

Prof. Bas Bloem 18:47 Absolutely, that I agree. So, a bit of dope, but it's the right dose. Once it turned into an impulse control disorder, then clearly we're in an area where nobody wants to be. This is a very difficult situation. It's all about the right dose, and it's just another argument, you know, for all the people with Parkinson's listening to not be too afraid of dopaminergic therapy. I think we still leave many people severely undertreated, and that's a bad thing. Yes, there are adverse effects, the dyskinesias, and yes, there are impulse control disorders. These don't happen overnight, so if you carefully explain to people about the risks of, for example, impulse control disorders, and if you involve the spouse, the partner, friends, and family, because the patient doesn't always see the problem, then you can pick this change in behavior up early on, and then adjust the treatment accordingly, before things go really bad.

Dan Keller 19:45 Have we missed anything important or interesting?

Prof. Bas Bloem 19:48 No, I think this is important. I hope that many people listening will be motivated to use art more, whether you do this as a professional, as part of your educational program, or to prescribe it as a therapy, or whether you're a patient, to offer new hope and comfort in a way of expressing yourself. I think the power of art is magnificent, and I hope that with our study with the University of Vienna in Austria, we'll be able to also provide a robust scientific underpinning for these treatments.

Dan Keller 20:23 Very good. I think you might motivate some people to try it.

Prof. Bas Bloem 20:27 I hope so. It's a fun topic, isn't it?

Dan Keller 20:30 Yeah, I mean it's novel, it's not just another drug. Yeah, yeah, yeah, exactly. To see the complete article in the magazine American Scientist, titled "What Parkinson's Reveals About the Artistic Spark," just search on American Scientist and Bas Bloem, spelled B A S B L O E M. For an interesting look at the relationship of artistic professions and a lower risk of developing PD, search on Bloem and Art and Parkinson's to see an article titled "Artistic occupations are associated with a reduced risk of Parkinson's disease." As with music and dance, art can provide another outlet for expression and can enhance quality of life for people with Parkinson's. Study evidence shows that visuospatial symptoms are prevalent in PD and can significantly affect people's quality of life. Making art relies on sophisticated neurological functions, and these can be trained through artistic endeavors. So, as Bas advised, art studios or programs in hospitals and other therapeutic settings can be beneficial. Already, some universities have established such programs, but more randomized trials are necessary examining the therapeutic benefits of regularly engaging in art to have a basis for incorporating it into medical practice and treatment plans. If you want to find art classes or programs near you, you can ask your local senior or community services organizations, or ask one of our helpline specialists at 1-800-473-4636. We also have information about art therapy on our website. Just go to parkinson.org and search for art therapy, where you'll find a link to a blog called "Painting with Parkinson's," all about art therapy. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Professor Bas Bloem is a neurologist at the Radboud University Medical Centre, Nijmegen, The Netherlands. He received his medical degree, with honours, at Leiden University Medical Centre in 1993 and obtained his PhD degree in 1994. He trained as a neurologist between 1994 and 2000. He received additional training as specialist in movement disorders during fellowships at The Parkinson's Institute, Sunnyvale, California, and the Institute of Neurology, Queen Square, London. In September 2008, he was appointed professor of neurology, with movement disorders as special area of interest. 

Professor Bloem is on the editorial board of leading national and international (scientific) journals and has over 800 publications to his credit. Since 2020 he serves as Co-Editor in Chief of the Journal of Parkinson's Disease. In 2002, Professor Bloem founded the Radboudumc Center of Expertise for Parkinson's & Movement Disorders and, together with Dr. Marten Munneke, developed ParkinsonNet, an innovative care concept for Parkinson's patients consisting of 70 professional regional networks. In 2018, he won the Tom Isaacs award in recognition of his long-standing achievements in the field of Parkinson's disease. In 2022 he received the Stevin Award, the highest recognition for a Dutch scientist who has had greatest impact on society.

00:00:05
In addition to movement symptoms, many people with Parkinson's disease also experience non-movement symptoms. These symptoms can impact people with Parkinson's in a variety of ways, including causing anxiety. Feeling worried is an understandable reaction to a Parkinson's diagnosis. But when feelings of constant worry or nervousness begin to influence daily life, a person may be experiencing anxiety.

Anxiety is not simply a reaction to a Parkinson's diagnosis. It is a part of the disease itself, caused by changes in the chemistry of the brain. As many as 40% of people with Parkinson's disease will experience a form of anxiety. The four most common forms of anxiety related to Parkinson's include generalized anxiety disorder, anxiety attacks, social avoidance, and obsessive-compulsive disorder.

Generalized anxiety disorder is characterized by feelings of nervousness and recurring thoughts of worry and fear. The worrying is more than what would normally be expected given the situation and can lead to feeling out of control. Physical symptoms that may accompany generalized anxiety disorder include butterflies in the stomach or nausea, trouble breathing or swallowing, racing heart, sweating, and increased tremors.

Anxiety attacks, also known as panic attacks, usually start suddenly with a sense of severe physical and emotional distress. A person may feel as if they cannot breathe or are having a heart attack or a medical emergency. These episodes usually last a few minutes to an hour, particularly when associated with off periods, though they can last longer.

00:01:56
Social avoidance, also known as social anxiety disorder, involves avoiding everyday social situations because of a fear of embarrassment that Parkinson's symptoms may attract attention. Exposure to social situations can lead to severe anxiety. This goes away when the person is removed from or avoids the situation.

Obsessive-compulsive disorder, often called OCD, this type of anxiety can cause persistent, unwelcome thoughts or images. These are accompanied by an urgent need to engage in certain rituals, also known as compulsions, to try to control or eliminate these thoughts. For instance, someone with OCD may knock on a wall five times before leaving a room. Performing these rituals only provides temporary relief, while not performing them increases anxiety.

Each of these forms of anxiety is not tied to disease progression. Anxiety can begin before a Parkinson's diagnosis or develop much later. Both psychological and biological factors can cause anxiety in people with Parkinson's disease.

Common fears and worries that go along with PD may trigger anxiety. One is a fear of being unable to function independently, particularly during a sudden off period, which is the time of day when medication is not working. This can lead to a fear of being left alone. Many of the brain pathways and chemicals affected by Parkinson's are the same as those affected by anxiety and depression. People with Parkinson's have abnormal levels of the brain chemical GABA. Anxiety and depression are also linked to low GABA and can be treated with a class of anti-anxiety medications designed to boost levels.

00:03:40
Anxiety is usually diagnosed by a primary care physician or mental health professional who will ask questions about certain symptoms, mood changes, and behaviors. The good news is that there are effective ways to treat anxiety. These include medications and psychological counseling, specifically cognitive behavioral therapy.

Depending on the severity of symptoms, psychotherapy can be used alone or in combination with medication. Care should be tailored to each person's individual needs. Addressing anxiety can help you live better with Parkinson's. These tips may help a person manage their anxiety. Empower yourself by discovering how PD symptoms, including anxiety, can impact you. Keep a diary of your moods, medications, and PD symptoms. Notice what triggers your anxiety symptoms.

Exercise can help reduce anxiety, improve mood, and help manage other Parkinson's symptoms. Talk to your doctor about anxiety. Discuss anxiety with your friends and family, who can help you explore new ways to cope. Find a support group for people with Parkinson's.

Be flexible and try different approaches to coping with anxiety. Understand that symptoms change. If a coping strategy stops working, try a new approach. It's important to remember that you are not alone. If you would like more information on Parkinson's disease and anxiety, please visit Parkinson.org/Anxiety or call the Parkinson's Foundation Helpline at 1-800-4PD-INFO.

Dr. Michael Aminoff 00:00:05
Depression is a very common disorder that many patients with Parkinson's disease suffer with. Many of those patients don't recognize that they have depression, and this leads to a problem because they suffer really unduly because they haven't sought treatment for their disorder. It's a problem that is probably misdiagnosed or not recognized in many instances. The reason for that is that some of the symptoms of depression are similar to the symptoms of Parkinson's disease.

Therefore, the physician does not recognize that depression is a problem in addition to Parkinson's disease. In most cases, it's mild. But certainly in some patients, it can be much more severe or even disabling. What are the symptoms of depression? Well, they are very variable. They include feelings of sadness, of being unhappy with life, an inability to make decisions, a certain apathy, and a constant feeling of fatigue. It may include disturbances of sleep and changes in appetite.

A lot of patients who are depressed have really no interest in going out or enjoying life. They may have difficulty communicating with other people, and that makes it much more difficult, of course, for physicians or other healthcare providers to help them. We all have ups and downs in life, but it's when these symptoms interfere with the ability of the patient to live a normal, satisfying life that they really merit a lot of medical attention. Because these symptoms can be increasingly overpowering, and some people may eventually feel that life is not worth living. Occasionally, patients may even try to harm themselves because life seems so wretched.

Dr. Michael Aminoff 00:02:07
People have often wondered why patients with Parkinson's disease become depressed. Parts of the brain that are concerned with our emotional state are involved in patients who have Parkinson's disease. So there may be disturbances of function in the brain in those very areas that affect how we feel. What can we do about depression? There are a lot of things that we can do. They include, for example, various medications, various antidepressants. There are antidepressants that have been used for many years, and they are known to be effective in people with Parkinson's disease who are depressed.

There are other medications that have been developed more recently, and these medications are also very effective. The issue with all these antidepressant medications is that they don't work instantly. So when we start a patient on medication, there's going to be a delay before the treatment will kick in. There's no one dose of any particular medication that fits everyone. The typical approach would be for us to start a patient on a small dose of the selected antidepressant, and then gradually build that dose up until there's a beneficial response.

Now, in addition to medication, there are other things that we can do. Meeting, for example, regularly with a psychotherapist, who could be a psychologist or a psychiatrist, can be very valuable. And the combination of such meetings for psychotherapy and taking medication is generally more effective than one or the other approach alone. Another approach is to really keep people very active.

Dr. Michael Aminoff 00:03:48
Now, the problem is that when patients are depressed, they don't want to be active. But if they can be encouraged to be active, if they can go out to the gym every day or go for a brisk walk an hour or so a day, that is really very helpful in helping depression. There are very effective treatments for depression, and the only problem, really, is knowing when to prescribe or give those treatments.

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Apathy can be a component of Parkinson's disease. According to today's guest, movement disorder neurologist Dr. Nabila Dahodwala of the University of Pennsylvania in Philadelphia, apathy has traditionally been defined as a loss of interest or a lack of motivation, but she says it goes beyond that and interferes with making and carrying out plans, whether physical actions, such as exercise, or something requiring attention and cognition, so it can reach into all aspects of life. In this episode, she describes the condition of apathy, how it can affect a person's life, and some strategies to alleviate it and gain motivation to move through exercise. First of all, what's the definition of apathy?

Dr. Nabila Dahodwala 1:36 That is a really good question. So, I think traditionally we thought about apathy as a loss of interest or lack of motivation in doing things, but in fact I think it's probably more complicated, and I like to think of it more as disordered goal-directed behavior. So we all have behavior that's intended to accomplish some goal, and when that behavior is altered, and it can be in a lot of different facets of behavior, it'll seem like a patient or a person is apathetic, and I can break it down for you. So, I think to have normal goal-directed behavior, you need to be able to initiate a plan or a goal. You need to be able to plan it, and you have to have some motivation. It can be external or intrinsic, and it can be positive or negative, but I think you need all three of those facets to accomplish a goal. If there's impairment in any one of those three, I think it can look like you're apathetic.

Dan Keller 2:35 Is one of those reasonable goals self-care in PD? Can apathy get in the way of taking your medication or exercising?

Dr. Nabila Dahodwala 2:44 Oh, for sure. I think apathy can affect any aspect of your life that requires taking care of yourself.

Dan Keller 2:51 Is it different from depression? How would you tell?

Dr. Nabila Dahodwala 2:55 You know, I think there's actually probably a lot of overlap, so when you lose interest and you're feeling unmotivated, it can sometimes go along with feeling sad or hopeless or depressed. It can also go along with feeling fatigued or tired or sleepy, and then lastly can go along with just having a harder time planning your day, having some executive dysfunction, some anxiety, so I think there's a lot of overlapping concepts, but you can also just be apathetic without being depressed, without being tired, or without having cognitive impairment.

Dan Keller 3:34 Can it be an intrinsic part of Parkinson's disease, actually some sort of biological mechanism that's making you apathetic?

Dr. Nabila Dahodwala 3:42 Oh, I think it is. I mean, not always. It can be, but I think part of Parkinson's is that your movements are slower, but also your thinking can be slower, and your behavior can be slower. It's harder to plan a movement. It's also harder to plan an activity. It's harder to get started with something. I think it's really easy to think about it when you're thinking about movement, like it's harder to take the first step or to reach for an object, but it's also harder to initiate a behavior that's a cognitive behavior, not necessarily a movement. But that being said, it's not all the Parkinson's biology. I mean, I think it's important to look at other medications that you might be taking that might kind of change your behavior, other social stressors that might be going on in your life, but I do think the Parkinson's disease itself is a part of what causes apathy.

Dan Keller 4:35 How can it be approached or treated?

Dr. Nabila Dahodwala 4:38 That's a great question. So, I will say we don't have any approved FDA medication for apathy, but if we think about what are the underlying drivers of apathy, if there is underlying depression, we can treat depression. If there is underlying cognitive impairment, thinking about having a structured day and understanding where and how executive dysfunction is interfering with you achieving your goals can help you kind of develop some strategies to address it. You can try medicine. I mean, we can sometimes actually, dopamine itself can help with initiating movements and initiating behaviors, it can help with your speed of movements and getting through something that might be a more challenging endeavor, so sometimes just regular Parkinson's medicine changes can help. If it's like a wearing off symptom, like when your medicines are off, you're more apathetic, then definitely adjusting your medicines is a good idea. And then sometimes it's a little bit of trial and error with trying different antidepressants or stimulating medicines to try and help you improve your behavior.

Dan Keller 5:49 Can antidepressants be actually detrimental in some cases?

Dr. Nabila Dahodwala 5:54 Antidepressants can sometimes make people feel a little flat, they sometimes can make people feel tired, so you have to make sure that the antidepressant is doing the job you want it to. Not all antidepressants are the same, and so, you know, if one doesn't work, it's worth trying a different one. Some can be a lot more activating, some can help you stay awake during the day, and some can really help improve your mood, which will ultimately help you feel less apathetic.

Dan Keller 6:23 You did a study on goal-directed behavior. Can you just briefly tell me what that was about and what you found?

Dr. Nabila Dahodwala 6:30 I've done a few studies. One was to try and measure goal-directed behavior. So, I think a lot of the studies of apathy have just asked people their symptoms or care partners whether they think they feel apathetic, and I think that has some limitations. So, if you have not a lot of insight into what's happening, you might not be able to report that those symptoms are ongoing. If the caregiver is under a lot of stress or burden, they might over-report symptoms when it may be really the motor symptoms of Parkinson's disease that they're observing, so I wanted to try and objectively measure behavior based on how people performed on different tasks. So I tried to measure how quickly they initiated a behavior. If we made the task more complicated and involved more planning, we wanted to see if that maybe slowed people down, and then we added in different indicators of motivation. People would get money if they performed well, or there would be a penalty, like they would lose money, and in that way we developed a tool that could measure the different components of goal-directed behavior to see if a patient was apathetic. And then I took that tool and applied it to a group of people with Parkinson's, and at the same time implemented an intervention to try and get people with Parkinson's to exercise more than they were before, and then I tried to see if these different components of goal-directed behavior influenced how they responded to the intervention. So the intervention was this kind of social incentive, like a game where people wore a Fitbit that monitored how much they were walking, and then they had a goal for each day for how much they should be walking. They worked as a team with a partner, and if their team met the goal for the week, they moved up a level, and if they didn't, they moved down a level. And for any one day, one member of the team represented the team, so you got like some days off, if you weren't the team representative, it was okay if you didn't meet your goal for that day, but you could encourage each other, and you get reminders through your phone if you met your goal or not, and to remind yourself to exercise for that day. What we found is having that infrastructure and incentives in place and reminders for exercising did help people exercise more. There were specific impairments in the goal-directed behavior that suggested you would do better. It basically worked for everyone, which was good news, but it wasn't like if you had problems with motivation, you were more likely to respond, as opposed to someone who might have problems with initiation.

Dan Keller 9:16 Did that carry over into daily life, or it only worked within the study and those parameters?

Dr. Nabila Dahodwala 9:23 So that's a great question, because I don't know. Through the study we only followed people for six weeks, so I think what I'd like to do in the future is to see what's sustainable and how can we build in this type of infrastructure for everyone anyway. So, with that not within the confines of a study, there are some apps out there, fitness apps that do this for you, that have reminders for exercising, that will give you rewards if you meet different goals that you've set, but I think what helped, in addition, in this study was that it was in the context of their clinical care, and so I think the messaging that people were getting were from us, and they felt that the doctor and the medical team was really invested in their care, and it was the medical treatment, just like taking your medicine every day, it was just as important to exercise every day, and they were getting that importance of it because we were so involved with communicating with them about exercise.

Dan Keller 10:24 Short of those motivating factors built into this, it seems like apathy in itself would be a barrier to exercise. Exercise is good for you, but how do you accomplish it if you're apathetic?

Dr. Nabila Dahodwala 10:38 Yeah, no, it's the hardest thing. It becomes a vicious cycle. If you're not exercising, you feel worse, you can feel depressed and apathetic, and then it's even harder to exercise, which we know is good for people with Parkinson's disease. So, I think really breaking it down and making it more manageable. So, I think starting with a very small amount of exercise a day, like maybe five minutes a day, bringing in a partner or a friend or a relative to also exercise with you, or like the way that our study worked, people signed up in teams, so there's someone else also invested in this, they're also exercising, and you can do it together if you live near each other, or at least you don't even have to be together, but you can see what the other person is doing and kind of work together as a team. I think giving yourself rewards for exercising—you know, through some of these studies people sometimes get paid, but I think think about like what's important to you and what after having exercised give yourself a treat for doing it—and I think scheduling it into your day is really important. It needs to become like a routine, just like you brush your teeth every day and take your medicine every day, you exercise every day, and it can be, like I said, as little as five minutes, although a goal would be 30 minutes a day with a mix of cardio, strength, and balance training in there. But I think starting small and working up, so it doesn't seem so overwhelming that, oh, I have to exercise at least 150 minutes a week, which sounds like a lot, but if you start breaking it down and make goals for yourself, you can slowly chip away at them.

Dan Keller 12:18 So it sounds at this point in a practical sense, outside of a study and outside of a therapeutic intervention, peer encouragement, peer pressure might be the motivating factor.

Dr. Nabila Dahodwala 12:32 There's a lot of study of behavioral health economics, like how do we actually change behavior, and this is in all people, not specifically people with Parkinson's, who are different, because they might have impaired motivation or impaired ability to move well, or cognitive impairment, but if you take everyone together, financial incentives are very compelling. Social incentives, like peer pressure, are also compelling. Making it fun, like making it a game, can help keep people motivated and exercising, and then I think we have to think specifically about people with Parkinson's and personalize it for you specifically with Parkinson's and what you're facing. How can we build in exercise into your day, and it should always be fun.

Dan Keller 13:19 What kind of effect would one's apathy have on family care partners, friends?

Dr. Nabila Dahodwala 13:27 For sure, when a patient is feeling apathetic, it affects the people around them, and oftentimes, especially partners who may be living in the same house with them, spouses, adult children, family members, they often express feeling a lot of strain or burden because they're more responsible for the other person, or they're worried about the other person, or they're not able to do the things they used to do together as a couple, and so I think it's important for those partners to also take care of themselves, to find moments where they can spend time with other family and friends, get breaks. Also, they should be exercising. I mean, everyone really should be exercising, not just people with Parkinson's disease. So, just, it's important for care partners to also be supported in this journey with Parkinson's disease.

Dan Keller 14:21 Is there a message in a nutshell for people who have apathy, or people living with people with apathy?

Dr. Nabila Dahodwala 14:28 I would say, in a nutshell, it is very hard to start exercising if you haven't been exercising, but once you start, you're going to feel better. It's going to feed into itself, then once you're exercising and feeling better, it's going to be easier to keep exercising, and you're going to feel more motivated and less apathetic. So, I think that's like starting with the small goals will help you get to the bigger goals.

Dan Keller 14:54 Great, thank you. Bye. And for more information, search our website at parkinson.org for apathy. If you click on the heading apathy, you'll find an overview of the subject, tips and techniques for coping with it, a link to a fact sheet on apathy and PD, and a link to a free book called Mood: A Mind Guide to Parkinson's Disease. You'll find these resources and more, such as the Parkinson's exercise recommendations fact sheet and infographic, by visiting parkinson.org/library. There are also a few related blog posts. You may also want to listen to a past podcast called Using the New Parkinson's Exercise Recommendations as Part of Your Treatment Plan. Just go to parkinson.org/podcasts and scroll down to find it. As Dr. Dahodwala said, exercise can be very helpful in relieving apathy, and it can be divided into small increments with a goal of getting 150 minutes a week—that's just 30 minutes a day, five days a week, or about 20 minutes every day. Even there, five or 10-minute increments of moderate exercise a few times a day is a good way to start and can add up. And speaking of small increments, one way to get motivated to plan and work toward a goal is to break the task into small parts. It's easier to deal with a single gentle wave than a tsunami of work. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Nabila Dahodwala, MD, MS is a Professor of Neurology at the University of Pennsylvania. She is also a Senior fellow at the Leonard Davis Institute of Health Economics, Institute of Aging fellow, and Director of the Parkinson Foundation Center of Excellence at Penn. Dr. Dahodwala's research interests involve access to care; disease prevention and health promotion; disparities and health equity; and global health and risk communication. She has served as the chair of the American Neurological Association’s Health Services Research Special Interest Group and is a member of the International Parkinson and Movement Disorders Society’s Integrated Care Taskforce and the Michael J. Fox Foundation’s PPMI steering committee.